Tony Feller's Journal

Happy Anniversary Tony....

2009-10-17T21:09:00.002-04:00

1-2-3 "HAPPY ANNIVERSARY CRYSTAL!!" was what was said to me first thing this morning by a group of 8 year old girls. Ashley woke up this morning and made me an anniversary card.....she is such a thoughtful little girl. She realized there would be no opening of cards for me today as I had always gotten to do in the past. As I got her ready for dancing I was going over and over in my mind how I thought this day would play out. I have never done something like this (scattering of ashes) before or even attended something like this before. On such a monumental day, how could I possibly honor him in the way he deserved to be honored?!

Many of my friends offered to make the trip to Cedar Grove with me today. I appreciate all of the offers I received, but there are just some things that I need to do by myself. As stated before, October brings such joys to our family, but this October seems to be filled with more chaos than normal---at least for me right now. Having the hour and a half in the car each way was a nice time to reflect, cry, pray and remember.

Funny how things happen at certain times....I think the "let me play every sad love song" country music DJ was working while I was in the car driving. I got through them and got off of I-74 to head towards Cedar Grove....turning right off the exit takes you towards the casinos (Tony use to joke: "Come on honey, one quick game of black jack!"), but I made the left turn to go to the church. After such a gray, cold and rainy week here in Indy, the day was beautiful. Is was if Tony knew what was on the agenda today and ordered up some sunshine to help our spirits. It was a beautiful, crisp fall day. I pulled into the church and went to his mother's gravesite. Looking across the way I heard laughter and could see a group of men in tuxedos. Today someone was getting married in that church and the groomsman were all outside enjoying a moment just as our groomsman had done on this day 11 years ago.

Next came Aunt Betty's house. Walking into her house set off one of those "trigger moments". It was the first time I had been there without Tony opening that door with me. We were there this summer for the big event aunt Betty has every year. Leaving on that day this summer, I had a feeling it might be his last. So in I go and am greeted with a big huge and smile from aunt Betty. "The firsts are hard" she said immediately. She knows. She lost her husband of cancer too. Soon after I arrived his cousin Shane, wife Christi, his dad Jerry, mother in law, Karen, and his sister , Tonya arrived. We were ready.

We went to the church and placed some ashes there behind his mother's headstone. It was there that I read something very personal to everyone. Before Tony and I got married I made him do one of those "cheesy wedding things" that I'm sure all men hate.....I had us write letters to each other that we agreed we would not open and read for 10 years. Tony did not want to do, but obliged my wishes. I am so grateful he did. We read the letters together last year on our 10-year anniversary, but a line in his letter to me made such an impact on me when reading it this morning. Part of his letter to me had the following message:

"I am looking forward to a long, happy, loving life with you. I can hardly wait to see where we are in ten years. what our lives have become. How we've raised our kids. How our careers have evolved. What challenges we have overcome and what challenges we face. I know we can do anything together. Together we're going to put values into the lives of others......"

It was that last sentence that really got to me because how true those words written so innocently in 1998 turned out to be. He changed the way people valued what was important in their lives. His battle and experiences helped others to be a better spouse, parent, sibling and friend.

After the graveside remembrance Tonya led us up this hill behind the church (where he proposed to me, and where he played as a child with his cousins and sister). I had no idea what to expect. I was such a beautiful spot. It was far more beautiful that I could have ever imagined. It was so peaceful, so simple, so calm. He was there. His presence was felt. His father read some scripture and wonderful messages about life after death. Tonya sang the song that she sang to us on our wedding day. It was time for Tony to be on the hillside again. We each took a turn in scattering his ashes. The winds made a noticeable increase in their power. We also buried a portion of his ashes at the base of a tree on the hillside....just like that it was over. I just happened to look at my watch and with tears in my eyes I realized it was 2:30. Our wedding began at 2:30. It was not planned to happen at that time, but that's how the events unfolded. Our love and journey together had come full circle.

I have given careful thought into where to go with the blog from this point forward. Some of you have asked that I keep writing. Others of you understand how this particular blog keeps me "stuck" in the life with cancer. I realize that there may be days ahead that are "trigger" days for me that I may feel i need to release my thought by writing. However, this site is no longer the appropriate avenue to do that. This blog was really meant to be Tony's blog, not mine. I thank you all for following on the journey with us. My fear in stopping the blog is that people's memories of Tony will over time begin to fade. I guess I saw the blog as a means to keep his memory alive. I realize that what Tony gave us was really a lesson on life, not just a memory. Peoples lives are already forever changed because of his impact and I don't need to blog in order for people to remember him.

So, would you call this a monumental day? Life will go in. Mine will never be the same without Tony, but it will go on. It has to for our children. Today somebody in that church in Cedar Grove had the best day of their life. Today, that couple moves forward making new memories together. Today, Tony and I created another memory together at that church. I will love him always. He will never be forgotten. ...

My blog tonight will not end with "more updates to come" as Tony started so long ago. I don't know where my road will lead me, but it has been my pleasure sharing our life with all of you. Thanks for the support you have given us and all of the prayers that I know we are still receiving.

My love to you all,
Crystal

I'm not sure....

2009-10-11T20:38:00.003-04:00

This was an interesting week to say the least....i say interesting because I was called upon by different people to give them advice....all kinds of advice on how to deal or handle the situations that were before them in their individual lives. I don't necessarily consider myself a wise person, but rather a person with a different perspective than others based on my situation. I hope I helped them. It felt good to be the one helping instead of the one always needing help.

That's hard for a lot of people to understand, but after 5 years of receiving help it starts to make you feel really guilty. I know people would not do it if they did not want to, but it did feel good to be able to give back even if it was on a small scale.

I had a great talk with a friend at lunch this week that asked me how long I was going to keep writing. My response was "I'm not sure." In some ways it is therapeutic for me and in other ways it makes me feel good to see the comments that people send me about what they have read. I think that the blog has been a good way for people to understand how cancer impacts a family and it helped changed many peoples perspective on life. Tony had an amazing ability to do that through his writing.

I am somewhat struggling with what to do with the blogs. If anyone knows a publisher I would love to honor Tony by having them published in a book form....I just don't know how that whole process works. I am not sure if I am going to keep writing.....it is hard to explain. I'm not sure why, but at times I feel like the journal keeps me "stuck in the cancer life" and is sad for me. Other times it makes me fell close to him and makes me want to continue it for him. A counselor just questions if it is healthy for me to continue.

No need for me to decide now I know, but I am not sure what I will do.....would love to hear some thoughts on this one......
The kids had a decent week. They are busy with friends and activities. They got to spend time with Tony's sister's kids, Tony's aunt Carol and Tony's dad and stepmother. They had a good weekend. I got some down time this weekend as well which was well needed. I will write more later. Just a quick update for now.

More to follow (I think?????),
Crystal

What do you tell them?

2009-10-06T21:44:00.003-04:00

Sorry it's been a while since my last entry....I have been meaning to write, but before I know it it is 11pm or later and emotionally, I just can't do it that late. It has been a mixed week. I went back to work at the preschool which has been a positive thing for me. It keeps my mind busy, but it also has been tough because there is still an enormous amount of things that I need to get done. As many of you know through previous journal entries, October is traditionally busy for us. It is Ashley's birthday, my birthday, our anniversary, Halloween parties with friends, friends birthday parties and dance team parties.....you get the picture.

Tonight Will said, "mommy will play Candyland with me?" As it would have made my life more productive to say "not right now" (remember that things to do list? The number is back to 23!) I immediately felt Tony say "play with him." Tony always took the time to play with the kids....I was always the "busy one" and he was the "super fun one." He taught me that the other stuff can always wait because the kids don't remember that the house was clean before bed, but they do remember laughing during games and singing the new Miley Cirus song while watching YouTube with me. So, in an instant I said "sure, lets play."

As last night brought tears for Ashley at bedtime, so did tonight. Tonight actually, both kids were sobbing about missing Tony. They are use to him being gone for 2-3 weeks at a time because of Germany, but there has not been a skype call this time, there is no circled date of return on the calendar on the fridge, there is no counting down the days until he gets back. Ashley is actually scared of him dying. She has a bad image in her mind and she says it scares her to think of him going to heaven....I have tried my best to help her, and am looking into Brooks Place for her, but I know some things only time will heal. she asked me "when is it not gonna hurt so bad mommy?" I could only cry in response and tell her..."I don't know."

I have so appreciated all of the cards with wonderful letters to the kids about why you all loved their father. I read them to them everyday to try to show them the impact he had on so many lives. I went out this weekend with some friends and shared some laughs. It was odd to go to a movie and dinner and do "normal stuff".....I seem to forget how to do "normal stuff". It is an odd feeling and one that is hard to describe.

Before I forget to mention it, I got a wonderful letter and donation from Meredith Rankin's husband, Justin Rankin this past week. Meredith was the women here in town that was diagnosed with stage 4 colon cancer when she was 23 and she passed away when she was 25. Tony and Meredith became supports for one another and they shared the same oncologist. Her husband and mother started a Meredith's Miracles Colon Cancer Foundation and they are wanting to pay it forward. Our family was one of the first families to receive a donation from this foundation....thank you Julie and Justin!! They are in need of some golf fanatics to join them on October 17th for a golf outing to help raise money for their foundation. Meredith has a Caring Bridge site (Meredith Rankin) for more information. I told Meredith's mother that I would announce the outing on the blog to try to generate some interest. They need some more foursomes!!!! I will try to post the link later this week, but please go to the Caring Bridge site for more immediate information:)

The kids continue to find pennies from heaven that daddy drops down for them to let them know he loves them. The blue jays are still coming to visit my backyard, the phone calls and support of friends and family are still being offered.....for all of this I am grateful. I am grateful to all of you who tell me that I can do this. I am grateful to all of you who believe in me.......

More updates to follow,
With love,
Crystal

Clarity....

2009-09-29T21:53:00.003-04:00

When I put the kids to bed some nights the silence is brutal. I don't want this to be a continual "Debbie Downer" kind of a blog because that is NOT the way Tony and I lived together. We always tried to find the positives in life. Some days were easier to see them than others, but none the less they were there.

One positive thing that I must mention is the continued emails, cards and letters I have been receiving telling me how Tony impacted their lives. Each day I am in awe by a letter or card that starts out..."you don't know me but....or Tony did not know me but..." I always read these to the kids and know that in due time they will one day understand what a great daddy they had.

The tough questions continue to flow from William. He is only four, so I know I will have to explain things to him for a long time. Today on the way to school he asked me when God was going to be done with daddy being an angel....that's a tough one! After school Will was with me when I turned in Tony's car (it was a leased car). This was a trigger moment for me because it seems like I'm "cutting him out of my life" by getting rid of the things that were a part of his daily existence. I really struggled with the car thing, but knew financially I needed to do it. Will saw my crying on the way to the dealership and said "Mommy, I'm gonna miss daddy a lot more than I'm gonna miss his car." Insightful just like his daddy.

Those are the moments that cancer still controls my life....a 4 year old should should not be talking about things like that! Will is still feeling a little under the weather and I had to take him back to the doctor today. He never complains though about being sick-just like his daddy isn't he? Ashley appears to be back in her routine of school-friends, dance- friends, church-friends....she has remained her social butterfly self. I have been looking into some additional counseling options for her as I fear she is stuffing many emotions way down deep inside. But, overall she is doing ok.

Many of you have asked me to do things on 10-17 because you know that would have been my 11 year anniversary. Everyones offers were nice, but none of them felt right to me. As I sat one night it came to me as to what I should do that day....... it may seem ridiculous to some of you, but to me spreading his ashes on that day just seems to make sense.

Let me tell you why. I'm going to share a personal story of one of the best days of our lives together. When Tony and I first started dating I lived in Massachusetts and he lived in Virginia. It was 12-12-07 and we were flying into Cincy for me to meet his sister, who was not going to be able to stay for the holidays (or so I thought). Tony was so excited for me to meet her, but there was a glitch in the plans (I laugh now at all of the roadblocks that happened to us even before cancer!).

Both of our flights were delayed---like 6 hours delayed. Irritating I thought, but still excited to meet him in Cincy. Little did I know that he was planning on proposing to me that night and he had people lined up to do things at certain times. I couldn't figure out why once we both got to Cincy why he was so nervous/anxious. Long story short, that night in a little town called Cedar Grove, he proposed to me in the church where his parents got married (where his sister and many aunts got married, it is a very special place to him---his mother is also buried beside this church). He had arranged for there to be flower arrangements brought in, candles to be lite, the whole nine yards! Of course I accepted and the rest is history.

Down the ways just a little from this church is a hill where he, his sister, and all of his cousins spent hours every summer growing up playing. Family has always been an integral part of Tony's life. He had such happy memories of this place because it is one of the few times in his life he experienced "pure happiness"....no worries, just the joy of being a kid. He told me driving past it one day (pre-cancer), "If I ever get into an accident and die I want you to spread my ashes on this hill."

So as I struggled with all of the kind invitations of outings on the 17th, it came to me to spread his ashes on our anniversary......we essentially agreed to start our lives together at this church and it makes sense to complete his life and honor his life at this church. Some of his ashes will be scattered on that hill that he so loved as a child....just like back then he is now in a blissful state of pure happiness. The remainder of his ashes will be buried next to his mother. Just as any child next to their mother should be-with no worries, with no stressors, just pure love.

It will be a much different feel leaving the church on that day then the feeling we had when we left it together on that cold December night. I know it will be an ending to the most amazing 11 year chapter of our lives together as husband and wife, but I can't imagine any other way to go out then to go back to where it all began.......

My love to you all, more updates to follow,
Crystal

Paying Tribute.....

2009-09-26T15:16:00.004-04:00

Monday will be 2 weeks since Tony has passed. I needed some encouragement today as I 'm not sure what triggered me to be so emotional this afternoon. A good friend told me today that I will face lots of "triggers" in the upcoming months, and they are correct. It has been extremely difficult doing the tasks that I am forced to be doing with the pain of losing him still so fresh. I began to clean out his car today and I came across a bag from Hallmark with cards in it that he had bought on 6-30-09. Those cards were meant for me, but he never got to write in them to give to me. Looking at the "blank cards" said a lot to me as to how "final" all of this really is. I will never get a card with his handwriting in it again. You all know how amazing he was with his words. Every card was such a gift to me because he spoke from his heart.

Having said all of that, my emotional status went downhill and I said to myself "I cant sit here and cry all day...not again today...i need some encouragement" So I went to the email that Eric Graham sent me with Tony's eulogy. I want everyone to know that Eric along with Doug Haller wrote this piece together. Doug could not make it back for the funeral, but he was with Eric on that day through their writing. They did a phenomenal job on explaining Tony's character and touching upon all of the important elements in Tony's life. So, even though it is a long blog entry, I want to share it with all of you again. It offers me encouragement and continues to make me want to be a better person and make Tony proud....so thanks Eric and Doug for a job well done!

My name is Eric Graham, I met Tony in the Spring of 1992 at Indiana University while we were pledging Theta Chi fraternity. We instantly became friends, probably because when it was time to buy dance shirts we were the only two guys that could fit into a youth medium! Although we moved to other parts of the country, we remained close. I have been very fortunate in my life to have not had, until Tony, anyone I truly care about pass away. So when Crystal asked me to say a few words about Tony, I have to admit I was a little lost at what to do. So being the smart yet very resourceful man I called our mutual friend, Doug Haller, who is a lifelong friend of Tony and just happens to make his living as a writer. Doug instantly calmed my nerves by reminding me that Tony's website was a great place to get some inspiration and he promised to write a few of his memories I could include as well. With that I felt at ease and tried on the only dark suit I own which just happened to be about 15 years old. Fortunately it still fit, but unfortunately as I looked in the mirror I noticed the not so popular double breasted suit that resembled something David Letterman would wear. So as I wiped the tears from my eyes I remembered all the nights Tony and I sat on the couch, Tony wrapped in his IU blankie that barely covered half his body, and I watching Letterman. So I thought what better way to honor my friend than with a top ten list. I know this may not be typical, but Tony was far from a typical man. So drum role please the top ten things I learned from Tony.....

10. How Important Friends Are:
I'm sure a lot of you attended Tony's fundraising benefit last week. Pretty amazing turnout wasn't it? More than 700 people showed up to support Tony and his family. There were childhood friends, high school friends, work friends, neighbors and complete strangers. There was also a fair amount of fraternity brothers there. Now Fraternity's don't always have the best image , but I can tell you that I have never been more proud to say I was a Theta Chi than last Thursday. Guys flew in from all over the country. They helped raise money. Tony's friendship to me has meant so much and we have been fortunate enough to never lose touch, but that's not the same with all my friends. Our daily lives often make it difficult to keep in touch. We focus on our jobs, and not on our relationships. Soon a few weeks pass between phone calls. Then a few months, and the next thing you know, a couple years. Because of Tony, I don't think that will happen again. He brought a lot of old friends back together and some new ones as well. I can assure you these friendships will not be taken for granted again.

9. How To Treat Strangers:
Friends are easy, but how do you treat some one you don't know says a lot about the type of person you are. It was one thing to read about Tony's courage on his blog. It was another to witness it. Doug writes, when we were sitting in the medical facility in Germany. We were both on our computers, and of course, Tony was the youngest patient in the room by about 20 years. Two women sat across from him. They were from Australia. It was their first day, and it was obvious that they were scared and a little ticked off that no one had stopped to help them. Tony looked up. "Is this your first day here?" he said to one of the women. She said it was. He got out of his chair, walked over and talked to them for about 10 minutes. That's all it took. "I know your nervous, but your in the right place," he said. By the time Tony finished, you could tell the women felt so much more at ease. He had that affect on a lot of people.

8. How To Be A Good Employee:
It's obvious that there are a lot more important things than being a hard worker, but your work ethic and attitude speaks of your character. Tony worked as a purchasing manager for the Sports Licensing Division group of Adidas/Reebok. I want to take a second to thank them and especially his boss, Sonny Short and Blake Lundberg, for being so supportive of him over the last 5 years. To be flexible and understanding so Tony could do what he needed to do. With that said though, he never took advantage of it. while we were in Germany he worked tirelessly answering emails and calls all while attached to IV's and medications. When I asked him about disability he refused to even discuss it until he could no longer walk without assistance. When co-workers called in with a cold, Tony showed up to work with a chemo bag attached to his hip. That's a work ethic!

7. Tony taught me what Realtors have known for years....when buying a new home its location, location, location. That could not be truer than in the Fellers case. I'm not referring to beautiful views or good schools, I'm talking about neighbors. The people that live around Tony and Crystal are nothing short of amazing. Throughout Tony's fight I have felt very helpless. I live 800 miles away, there is little I can do on a daily basis. His neighbors put my mind at rest from huge fundraisers to mowing the lawn to making meals, to helping with the children, they have been a blessing to Crystal and Tony and an inspiration to me. I mean no disrespect by calling you neighbors when Tony described you to me he didn't use "friend" he used the word "family." Thank you for taking care of my friend when I couldn't be there. Speaking of family......

6. How To Be A Good Brother, Cousin, Nephew, Uncle, Son or Son- In-Law.....
When you treat friends, neighbors and even strangers like family just imagine how he felt about his real family. I have never met a man that was so close to his extended family. From his father Jerry, sister Tonya, his cousin Shane, his aunt Carol, Tony was a role model on how to be a family man. Although all families have members that are less than perfect, Tony respected and honored his family and the Feller name through his life. That brings me to number 5....

5. How To Be A Good Father...
Tony loved his children Ashley and William. Often after I would finish telling him how active or busy my kids were, you know those politically correct terms for "driving me crazy," Tony's voice would change. You could hear the pride in his voice as he told me "I have great kids". He would talk with such pride in the way Ashley was doing in school or in dance, but most of all in what a wonderful big sister she had become. He would tell me how smart Will was and how he was good at puzzles. Anyone that knows Tony at all knows his positive attitude. The few times that Tony writes of disappointment it is usually because of something he could not do with his children. For example he writes: "Tomorrow cancer will take away my ability to watch my daughter get on the bus to start her year as a second grader. If cancer doesn't know me by now, I may get discouraged or disappointed by these things, but in the big scheme of things I'm not going to let it set me back. I'm not going to let the disappointment outweigh my ability to stay strong and fight back to get back on my feet and start swinging again. I've learned so many positive things from cancer and have had so many positive things occur in my life because of this disease, but not always having your life because of your health is by far one of the most difficult parts of this disease. For example, Ashley wanted me to take her to the pool yesterday and I physically couldn't do it. Crystal was on her way to the store and we told her that I needed to rest. I would do anything to feel well enough to have taken her to the pool and I think she understands, but doesn't make it any easier. Luckily one of our neighbors called a little later and invited her to go to the pool, but when she came back and we started talking about it again she asked shy I had to have the boo-boo in my belly. These are the times I want my life back...."

4. The number four thing Tony taught me was that even as a bald man weighing 130 pounds soaking wet you could still be cocky and cool! In other words, be happy and proud of who you are!!

3. The number three thing I learned from Tony was the type of person I wanted to be:
Facing serious illness, Tony turned into a leader. He pursued alternative treatment when "traditional" treatment medical therapies failed. He encouraged and comforted others. Throughout his journey, Tony's attitude and spirit has inspired friends, family, and strangers to embrace life, appreciate daily blessings and overcome challenges. When asked if he was in a good place spiritually, he said he was. He said he didn't have any anger. He still had faith in God. He still believed that good things were in store. He let go of past grudges. He accepted people for who they were, warts and all.

He told several of us he wanted to write a book. He didn't want it to be about cancer. He wanted it to be about people helping people. He wanted to show people that life offers more than one path. If one path closes, find another. If you break down, get back up. Tony created his own path in his battle. He felt like his approach could be applied to any of life's problems, no matter how big or small. He said "never give up no matter what the circumstance."

2. My mother always told me that the most important decision I would ever make in my life was not where I would go to college, or what career path I would follow but who I choose as my wife. Everyone out there whether they are in a blissful marriage or bitter divorce knows this statement is true. Tony made an excellent choice. When I toasted Tony and Crystal at their wedding 11 years ago next month, I told Crystal that as of that day I handed over my title as best friend to someone much more deserving. I have never spoken something more true. She had exceeded my wildest imagination and highest expectations. Fortunately, because of the kind of husband and person Tony was I don't need to tell Crystal about the countless times he sang her praises or the time Tony and I cried together in Germany after getting bad news and him saying SHE doesn't deserve this. She knows how he feels: he not only told her but showed her all the time. In his blog Tony writes "Simply put, the week's been a tough one mentally and physically and not sure what I would do without Crystal. We've had some great talks this week and I find myself loving her more each day. I don't know how she gets through each day sometimes, but she seems to always find a way and continues to be as supportive as possible. She continues to be my life line in this battle and I know without any doubt I wouldn't be here if she wasn't by my side." How many of you talk about your spouse this way?

Finally, the number 1 thing I learned from Tony was his phenomenal writing skills or at least how to borrow them.
What made Tony's journey so unique is that he shared it with all of us. His blog became a place friends, family and complete strangers visited once or twice a week. At times, Tony's writing was inspirational. At others it was heart-breaking. Sometimes you laughed. Sometimes you cried. But if you look closely, a lot of the journal entries always returned to a common theme, and that was Tony's love for his wife and children and to never give up no matter what. This is a wonderful gift Tony has given to all of us. While I was preparing this talk and looking for inspiration, I came across his entry for Sunday May 10, 2009, which just happened to be Mother's Day. After thanking the wonderful mothers in his life he wrote a few words about me and no it's not because I tear up like a little girl but because of our friendship, it just happened to be on Mother's Day.....At a time when I was scared, hurting deeply and wanted to just say I can't do it, Crystal you'll have to find someone else. Tony spoke to me. He told me I could do it and what our friendship meant to him.

So I would like to end this, not on something Tony said but on what Tony taught us. I don't think it can be summed up any better than what Crystal writes so I'll quote her...."The funny thing I have learned about life throughout all of this is that other people's lives often appear better than your own. We all deal struggles in life. Some struggle more publicly than others. But I ask you, whatever the struggle in your own life that you are dealing with, how are you facing it? I would be so proud and honored if all of you reading this evaluated a difficulty in your life that you are facing through the eyes of Tony. How would he see it? Are you still aware of the blessings in your life or do you only focus on the negative? Do you offer support to others when you can? Do you listen to your friends without judgement? Do you take enough time to play with your kids? Do you tell your family you love them everyday? How do you handle the difficulties in your life?

I know how Tony would....."

May he rest in peace and may his courage, attitude and strength be an inspiration to us all.

It is.......

2009-09-24T23:22:00.002-04:00

So here's the question a lot of you probably wonder about, but would never ask: "So what's it like now that all of this is done?" I see it in many peoples eyes, I hear it in their silence, I feel it in the comfort of their embrace......so here is my reply.....

It is the deepest pain in a person's soul with no visible wound. It is taking a quick second glance everywhere I turn because for a brief moment I think I see him pulling in the driveway or walking down the hall.

It is calling his voicemail to hear his voice, it is sleeping on his side of the bed because I want to be where he was. It is taking a moment in the craziest part of my day to tell myself "its okay, I can do this." Its the realization that as time goes on it is getting much harder mentally. It is wanting to cry all day sometimes, but then hearing Will say "mommy, are crying because of daddy?" and knowing that I need to carry on for my kids. Life for the caregiver after cancer includes straightening the linen closet, the pantry, organization of the refrigerator, and cleaning under the sinks. Doing these things will surely make me feel better right??? It is busy work and again an attempt at gaining some sense of control in my life that has been so out of control.

It is breaking down on the phone with the car dealership where we got his car from to finalize plans on turning his car back into them. It is just a car right? What's the big deal right? It isn't about the actual car at all. It's about the finality of it all. As I sit here and type this on HIS laptop tears roll down my face because it was on this keyboard I watched him write for months about his journey with such dignity.

It is some days being able to read the cards with all the wonderful words written about him, and other days holding off because I just cant do it. It is telling the person calling on the phone "No Tony isn't here right now." It is holding Ashley and wondering how she is really doing because she does not want to talk about it.

Life after cancer isn't necessarily filled without the pain of cancer. The sadness fills my veins at times like the chemotherapy that Tony had to endure to fight his battle. I had a friend tell me that Tony has finally gotten a victory of his cancer. He is victorious. He fought the good fight and is blissful in a well deserved rest. That brings me comfort, but the human side of me still feels the pain so much more. I know from experience that time heals all wounds.....Tony does not want me to sit here and cry every night, but for now that's just where I am at....and that is really ok.

I will write again soon, more updates to follow...
Love, Crystal

Lean on me.....

2009-09-22T09:48:00.004-04:00

Today is one of those days that I do not want to get out of bed. Anyone who knows me knows that I am not a person who can just sit around. I have always been a "go geter" and love being productive. I don't know whether it is the lack of sleep finally catching up to me or the calmness that blankets this house, but today I just cant stop crying. I know it doesn't all have to get done at once, but the list before me has 27 things (all important things) that need to be addressed soon. I just don't want to do them, but I have to. When one is forced into doing something because they have to, it always seems worse then it really is I think.

Today, William woke up and first thing he said to me was "I had a dream that daddy came down from heaven, but then he had to go back." Then he asked "is daddy's spirit still in me?" He followed with "I want to play a game with daddy, are there games in heaven?" It just breaks my heart so much for them. Ashley went back to school yesterday and went back to dancing lessons. She seems to be handling it the best she can. I fear that she does not speak of Tony enough, like she wants to put all of this behind her because it is too painful. I talk about Tony everyday so that she is given opportunities to ask questions or to just cry. Her "bad day" has not come yet......it will in time I'm sure.

I have received so many wonderful cards and letters from people that knew Tony from different areas of his life. The underlying message was his sense of caring for others, willingness to listen and offer support, and oh yes, that confidence and competitive spirit!!! I went to his office yesterday and was surrounded by the amazing "work family" that has taken care of us during all of this. His office was just as he had left it on his last day....he did not know he would not be back in there. His handwriting surrounded me, his IU garb dressed his desk, the family pictures filled the room. It was so comforting to be in his chair, but it also felt sad.

Last night when the kids went to bed, I did "those things" that I have heard of people doing when they lose someone close. Some of you may be able to relate.....I called his voicemail on his cell phone to hear his voice, I held the shirts he had most recently worn to feel his arms around me and to smell his cologne, I read every scrap piece of paper on his stand to feel close to him through his handwriting. Some of you may view those things as torturing myself, but I need to do it and get through it. The one thing I have not been able to do yet is to watch videos of us....its just to soon. In time, but not now.

For my New England friends, no Tony did not have anything to do with the Patriots losing their game yesterday...ha ha. His fantasy football partner is doing a great job too (way to go Matt!) Thanks to you all for the continued meals and calls. I am slowly starting to get into a "new norm" with the kids. Friday we will go to the Homecoming football game with our neighborhood. No plans after that. Day by day. I suddenly seem to have a lot of time on my hands that I am not use to having. It is time for me to be the one giving back to all of you who have been giving to me/us for so long. I want to be that friend who you can depend on. I want to listen to YOUR struggles and help all of YOU......I don't want cancer to control me anymore, so please let me be there for all of you now too.....

Love and peace,
Crystal

So now what?

2009-09-20T18:56:00.002-04:00

Today is Sunday. A Sunday in the Feller home during the NFL season is typically filled with the sounds of the NFL theme song, comments of "dang it", "go go go go", or "idiot! I shouldn't have started that guy today." Ahhhh, what a sweet, relaxing day it is. Of course I say this with a grin because watching Tony on any given Sunday did bring me such joy inside. He loved his football to say the least. Today my house was not filled with these sounds and a deep sadness filled me.

The little things that cancer continues to do me include putting away the blankets that Tony used on his hospital bed, putting away his last clean load of laundry, putting away his medicines and having a king size bed stare me down each night with visions of Tony beside me. Cancer continues to control my thoughts....i know this will pass in time, but for now it is where I am at in my life.

My family all went back home today. My mother offered to stay the night tonight, but I declined her offer. I have to start facing this by myself. I know I have so much support, but the night time is when I feel i will have the most difficult time. My house thousands of happy memories and visions of Tony playing with the kids, writing on the computer and playing the piano. I have to be ok being there by myself. To continue to delay the feelings I am sure I will experience is not really doing me any good.

I want to thank all of those who have sent me cards with wonderful stories of Tony. I print the emails to give in a book for the kids so as they get older they will have so many nice stories of their father. What a wonderful show of support for our family on Thursday and Friday. It was one of my proudest moments to be Mrs. Tony Feller.

Many of you have asked me to keep up with the blog. I plan on doing that. It may not be an everyday blog, but I will continue to keep everyone updated on how we are doing. As things settle down I will update everyone on a final fundraising total (ebay items are still going on). Eric Graham, who did the most amazing eulogy I have heard, emailed me his speech and I will be posting it next for everyone to read.

I need to go for now. I need to get the kids ready to resume their normal activities as of tomorrow.....bedtime is an hour away. Putting them to bed tonight ought to be interesting. I pray for the wisdom of Tony when the questions begin tonight.......I will keep you all posted.
Love,
Crystal

Just some details...

2009-09-16T07:50:00.002-04:00

I want to first thank the hundreds of you who wrote to me yesterday on this blog site, signing the guestbook, and on facebook. I read each and every one of them, but I have had to do so many things in the last 24 hours i have not had time to respond. The stories and comments you all left are being printed and bound for each of my children to always have. The stories help his positive impact on this earth live on and it helps me smile knowing of all the good he did for so many people. I have been asked by a few people on making his story into a book. Interesting thought....he always wanted to be a motivational speaker and writer if he was able to beat his cancer....maybe he still can be, but in a different kind of way.

The viewing will be Thursday from 4-8pm at Holy Spirit at Geist Catholic Church. The funeral will also be at the church on Friday at 1:30pm. Since there is no burial after the service (Tony wanted to be cremated) on Friday, I invite you to enjoy some food at the church and share wonderful stories of Tony's life!!

I need to go for now and continue all the preparations. A special thanks to my family and friends who continue to sit with me and the kids at the house during this time. This house is full of people still, and yet feels so empty without Tony's smile and voice.

More updates to come...
Love,
Crystal

Losing the love of my life....

2009-09-15T07:49:00.003-04:00

Have you ever heard the phrase "Timing is everything?" Just as Tony knew the right time to hold me when I was sad, tell me a joke when I was down or flash me his infectious smile when I was worried, he left this world at the perfect time too. It is with a heavy heart that I write to you all this morning to inform you that the love of my life passed away yesterday at 6:45pm.

I have always believed and I now know that when people are not able to respond when they are ill, they can still hear you. Our day started off the same yesterday. I got up and got the kids ready for school and began doing what little medical things I could still do for Tony. Hospice came in and checked on him, gave him a bath, changed his clothes (He sported his Pacers shirt today) and told me they would be surprised if he made it passed Wednesday. "Yeah, yeah, yeah, I know" I thought to myself. You see people in the medical community have told me for years that their isn't much time left. Only 10% of those with stage 4 colon cancer make it to the 5-year mark ya know.....as if that's what any patient with colon cancer wants to know.

There have been several times I have thought "this is it"......but again we are talking about Tony Feller right!!! Tony was the most determined man I have ever known in my life. So, even though I knew he was in a very bad position, I still had hope that this day would never come. He really thought that this day would never come. But, Tony is/was such a caring person and he knew how much I needed the support of my family and friends that he decided it was "his time" to go when I had a house full of people here to help me and the kids.

After the nurses left the day resumed as normal. It was filled with moments of extreme sadness as we sat by his bed and held his hand and then moments of laughter as well told the countless of funny stories of Tony. I received some nice cards and letters in the mail (a special thanks to Kim K. from Reebok----I read your letter out loud to him and I will cherish that letter for my children as they grow) and read them to Tony.....remember he hears me.

Around 6pm the family that was here started to discuss leaving for a bit to take a break, get new clothes and get something to eat when they were out (thanks here to Laurie Dyer for feeding everyone here last night). Tony must have known because he clearly did not want me to be alone as he was sensing it was close to the time for him to go. He changed. His entire demeanor changed. He got a little figidity, his breathing noticeable changed, his pauses became longer between breaths....he was telling everyone "Don't go!"

At 6:45 he opened his eyes and looked up to the heavens and took his last breath.....he fought it till the very end, but he went in peace. what a glorious Reunion he must have had at that moment with all of those we know that have gone on before him....he finally got to meet my dad.

Mrs. Park (the counselor) came over to be here with me for when I told the children. They did not cry and have not cried yet as of early this Tuesday morning......it really has not hit them. We talked for 30 minutes about daddy going to heaven and it still did not hit them. After all of the medical equipment had been taken out, the kids entered the room where he had been and said "daddy's bed is gone". Will asked "Where is daddy?" It is just to much for their precious minds to understand all at one time.....pray for understanding and peace for my children and for me to have Tony's spirit with me when I explain things to them in the upcoming weeks/months.

Arrangements are being made and details will be posted.....but I can not end without leaving you something to think about, something that Tony would want me to tell you. Tony was a wonderful communicator. We rarely "yelled" at each other, but rather we communicated with each other. He always listened to me and heard what I had to say, even if he did not always agree with me. Everyday of his life he told me and the children how much he loved us. When he was not able to respond to us anymore I continued to tell him how much we loved him and would miss him....but I never once felt like "Oh, I wish I would have told him____". Remember, everyday we "heard" each other.

So I ask you, if today was your last day on earth, could you leave it thinking you had said what you wanted to the people that you loved? Do you tell the people important in your life that you love them? Do you hug them or kiss them everyday? Let them hear you now. Tony is still telling us today how much he loves us, only now I hear it in my heart.....

More updates to come,
Love,
Crystal

It's been a few days...

2009-09-13T08:55:00.002-04:00

Sorry it has been a few days since I wrote last. The event Thursday was an amazing night filled with meeting new friends and reuniting with old friends. It was overwhelming to stand up there and see so many people there supporting us. Last count I received was at least 740 of you showed up!!! I talked for a while to Tony when I got home and told them of all your well wishes and how the event unfolded.

As of Thursday he became very restless and was not able to get comfortable. He had a rough night Thursday night and Friday night. When Saturday rolled around I let the Hospice nurse know that drastic measures needed to be taken to get him comfortable. They accessed his port to place a morpheme drip pump to help the pain. It has helped. He is such a fighter!!! He has not had any food or drink for three days now, but continues to hang on.

I have talked to him a few times and told him that it was ok for him to stop fighting. I told him he did not have anything left to prove and that we would be ok. He needed to be told these things, but he is still in control and he is still hanging on. He is no longer able to open his eyes and acknowledge that you are in the room, but I KNOW he can still hear what we are saying to him.

I will keep you all posted on him. Thanks so much to the fundraising committee (Brenda, MeMe, Anne, Gail Gemi, Scott B.) an all of the volunteers who helped make this a wonderful night for my family. Thanks to Mike and Joe for playing and to Mudsocks for hosting this event and making sure all ran as smooth as possible!

I will be giving a total soon on the funds raised....the ebay items are still on until the 17th I believe, but i think we are around 60K at this time!!!!!!

My love to you all, more updates to come.....
Love,
Crystal

The countdown is on.....

2009-09-09T22:39:00.004-04:00

Well, this is it...are you ready? Twas the night before Mudsocks, when all through the house, not a committee member was sleeping-only that mouse (really a rat, but bare with me here).
The raffle baskets were wrapped with love and care, and everyone is curious as to who will be there?

Mike and Joe have rehearsed and are ready to play, ebay is up and we are adding more every day. As the Feller's prepare for such a busy day, we are amazed at how many of you came from far far away!!!!

So here me exclaim as I end this blog tonight......thanks to you all who are going and I hope you have a great night!!!

On a side note, many of you have asked me if Tony will be there tomorrow night. The answer is a week ago I would have said maybe, but with his current status I just don't see how he can. He is in such a fragile state and I don't want to add to his confusion and put him in danger of something going wrong. I am planning on going and getting to meet many of you. Let me apologize ahead of time to those of you who I may not get to meet. It will be great to be surrounded by people who have been inspired and touched by our story. Don't forget to watch Fox 59 in the morning around 8:40am.......see you tomorrow night!

Love,
Crystal

Sleepless in Indy

2009-09-08T21:08:00.005-04:00

Tonight I will try to summarize how last night and today went for us. I wish this blog was going to be filled with laughs, but in a world of cancer you ride a roller coaster. Some days are laughs, and other days are filled with tears. Today was a tear filled day for me. Buckle your safety belts everyone and experience the ride....

Last night I turned in around 11:45. A rat crawled into our air conditioning unit and proceeded to "shut the unit down". You can visualize the mess of what a rat + a spinning motor equals. so now its 12:15am---sleep. Ooops, time to wake up it's 12:30 am and Tony needs help with going to the bathroom (I tell the story so honestly not to degrade Tony in any way, but rather to let those of you never touched by cancer to get a better sense of life for a family dealing with cancer). That lasted till 1am (with no result I might add)..Ok, now sleep.

"Crystal, crystal, I'm thirsty"-its 3:15am. Ice cream is the desired item. Tony's weakness at this point means that someone has to assist him in eating. If he falls asleep while eating then he may choke-so caregiver needs to be alert! 2 scoops of ice cream and a little water later its 3:45am and back to bed. "Crystal, I need up" (its 5:30am)....bathroom time until 5:50am. "Crystal, the phone is ringing"---it's 6:15am and the phone was not ringing. At this point some confusion is setting in due to his increased ammonia levels and high bilirubin levels which toxify the body. Just then I remembered, "crap it's a school day, and Ashley will be up at 6:50".
Next thing I feel is a tug on my shoulder and hear "mommy its picture day at school".

Just like that the night is done and I need to be ready for the day. What is my point in telling you all of this? I want you to see how important all of your acts of kindness mean to me (meals, watching and transporting kids) at this point. The night above is consistent, so my patience level is not great anymore and my body is tired.

He slept most of the day. He sat in the chair from 8:30am until 8:30pm. He drank more than he ate. He has become fond of McDonalds Sweet Tea. He says "Man that's good" when he drinks it. We increased his pain meds a little and tonight added an anxiety pill to help relax him at bedtime. Hopefully he will sleep better tonight. Now, here comes the tearful part for me....
The confusion level at this point is hard to deny. He snapped at William tonight by yelling "William!" and then realizing what he had done. Will did not know why daddy was mad at him. Tony told him to come over because he wanted to console him. Confusion moment instantly sets back in when Tony told Will he was yelling at the cat over there (points across the room). Will looks and the cat was not over there. In comes mommy and aunt Tonya to try to cover up the ordeal and divert both of their attention to something else.

Will and Ashley goes up to change into pj's. Tony became agitated. He tells me, "I'm sick of not being able to see anyone! I can never see anyone clearly! It's ridiculous, I never know who is here, I can never see anyone when I talk to them, they are always behind me...you never introduce me to people when they get here...I'm sick of it!" The whole time he is saying this I know that NONE of it is true, but he is too confused to reason with him, so I agreed with him and assured him that I will introduce him from now on and place visitors in front of him."

Next I hear, "Mommy, can I talk with you?" I know what that means, and although I am so grateful that Ashley is comfortable enough to talk with me about it, I'm emotionally hanging by a thread at this point. While laying with Will she told me that she has been having bad dreams about daddy. In her dreams sometimes daddy gets better, but then he gets worse and dies. This made sense to me because for five years she has seen her daddy do exactly that- get better then worse, better then worse. We talked for a while and they fell asleep.

So here I sit, writing to you all. I want everyone to know that there isn't anything special about our story. We are like the thousands of other families dealing with cancer, we just deal just more publicly with our battle. After all of this is said and done, I hope that all of you continue to extend your acts of kindness to those in your lives. You will unfortunately, know another family dealing with cancer again at some point in your lives. I aspire to be as good of a friend to all of you, as you all have been to me. Tony would say the same thing!

One final note, the ebay auction items are up and running....over 2,200 bids in the first 6 hours!!! Not all of the items are posted, so please check in from time to time for new listings. The ebay link can be found on the home page of Tony's website (http://www.tonyfellerfund.com/).
The Fox 59 news interview is set to air Thursday arounf 8:40am...not sure on the exact time, but that's what they told me.

Countdown is two days.....I can't wait to see all of you:)
Goodnight,
Crystal

A day with laughter

2009-09-06T23:12:00.003-04:00

Today was a similar day to yesterday. Lots of family, friends and laughs. People have been stopping by to pre-buy their Tony Feller Benefit T-shirts.....kinda crazy, but really really cool I think. More emails keep coming in with great stories of Tony from high school days and other funny stories.

Tony ate some fruit and applesauce for breakfast which really caused him some pain after. He has not really been eating much or drinking much, so this seemed to shock his system. Lots of pain medication had to be given to get him comfortable. The rest of the day was pretty uneventful. However, two things were definitely highlights today. I hope you enjoy them both....

First of all, for those of you who personally know Tony you know what a "competitor and firecracker" he can be!! In typical Tony fashion, he was determined to show us he is in control of things. He sat up in the chair and indicated he needed a drink. I was trying to help him hold the cup of water with the straw in it for him to drink. But, no no no he took the glass out of my hand and took the straw out. Ok ok, not so bad right? Then we asked him if he wanted his glasses to see better and he nodded "yes". His dad gets his glasses and puts them on his eyes for him. Tony proceeds to take them off, folded them and then opened them back up and put them on himself!!! The key word to the last sentence is HIMSELF! We all busted out laughing because that is just so like Tony to do something like that. Soon after that I helped him to the bathroom and told him he was a little pistol for doing that....he got a laugh out of it and gave me a big smile and looked at me with those big brown eyes......PRICELESS.

Second amazing thing today was that we found out that one of the fraternity brothers, Matt Greller, was somehow able to get the Governor of Indiana to declare Thursday some sort of "Tony Feller Day"!!! The details are not finalized, but i guess it is in the works! Amazing, simply amazing.

It looks like the news story will air Wednesday on Fox 59 between 7-9am....set your DVR's:)

Gonna keep this short tonight. I am very tired this evening. More to update tomorrow.
My love to you all!
Crystal

Not much news....

2009-09-05T14:25:00.003-04:00

Nothing exciting today. Last night was filled with more visitors and laughs. Tony was able to wake up, say "hi" and offer his hand out for a shake when people spoke to him. He easily drifts back to sleep even with a room full of people. A special thanks to Sarah Orinion who brought enough food to feed an army yesterday. I laughed when i saw how much she brought, but it was all gone by lunch today.

The word from the committee members is that the ebay items will most likely be up and running on Tuesday. There will be a new tab created on Tony's website called "Ebay Items" so be on the lookout. Once they are posted they will only be on for 10 days. Some items will be posted as the time for those events draw nearer. There are so many people who are getting amazing items donated for the event....another special thanks needs to be given to Eddie White, Tom Shine, Rodney Hughes, Scott Baker, Gemi Ozdemir, and numerous other Theta Chi's who are overnighting these items into Brenda.

Just to offer you a taste of some of the items that will be posted once 100% solidified......there is

A meet and greet with Lebron James before a game
Indy Car Experience around the 500 track with a driver
Tickets to the Masters on the final day with suite accommodations
Final Four tickets
Colts sideline seat tickets with pre-game on field access, VIP parking
Autographed items from numerous sports figures
Tony Stewart autographed bumper from his car he raced in Michigan last week
Pacer tickets with flight on the plane with the team and hotel accommodations
A case of wine a month for a year
Cubs tickets (rooftop) with food and beverages included

There is more, but that is a taste!!! Pretty amazing what everyone has been able to pull together!! As far as all of the funds from these items and from this Thursday's event, I want to let everyone know my intent. Since it is not looking like another Germany trip is in our future, the money raised will be to assist me in paying for all the accrued debt from the last 5 trips (in 15 months). Any funds remaining after that will be divided by two and deposited into our children's college funds.

Tony woke up during the night 4 times to go to the bathroom but was able to fall back to sleep easily. He comforted ME at 6:30am when I was upset...can you believe that??? He reached his arm out slowly from under the blanket and put his arm around me and patted me on my back when I was crying. A soft "I love you" was whispered. He didn't have to say a word....actually neither of us really needed to say a word. We both already know. There is a song by Alison Kraus (spelling?) that he sent to me on a tape when we first started dating called "When You Say Nothing At All". If you have never heard it, you should give it a listen. That song was in my head at that moment this morning.

Today he has been awake for 10 or so minutes off and on. He accepted some bites of cheesecake (thanks Anne), and watched a DVD of a lake house weekend we took in June with both sets of Petruska's. Overall, a good day so far.

Thanks for all of you who have sent me emails with stories of how Tony has changed your lives or made you look at a situation differently. I LOVE reading them as they cheer me up. Thursday promises to bring more of those I am sure......

More update to come,

Blessings,

Crystal

Where do I begin?

2009-09-03T18:59:00.003-04:00

This is just a quick update for those of you who have been following Tony's story. Today was much like yesterday. We had a house full of family and friends. We shared some laughs and we shared some tears. Tony is not eating much or drinking much at this point. He is sleeping most of the day but wakes often and looks around the room. He offers a smile to anyone he sees. I can tell you that his days will no longer be filled with needles, IVs or medication. We are blessed at this point that he does not appear to be in any pain. He is not taking pain medication yet seems peaceful.

At one point this afternoon I asked all of my family and friends to leave the room so I could have a moment alone with him. I know God was with me because of the things I was able to say to him without breaking down. He was awake for those five minutes and seemed to really hear what I was saying to him. I am so grateful for those alert minutes in his day.

Ashley talked with her counselor today and she told her she wanted to go to school tomorrow. I think all of this is a little too much for her and it scares her to be around. Her comfort is being with her friends and being able to play. I thought by keeping her home today she might enjoy being around family and friends, but I think seeing her daddy in this condition is too much for her to process. William on the other hand thinks it is great to have a house full of people. The more people willing to play with him the better!!!

On a side note I would like to take a second to mention the gathering on Sept. 10th at Mudsocks. Tony has been looking forward to this event for weeks and I hope all who read this plan on still coming no matter what his status. I would like this event to be a celebration of his life and for me to be able to meet some of the people who I have heard stories about, received supporting emails from, and who have called to offer encouragement. It will be nice to put faces with all of the names and I really want to be able to offer my appreciation.

Fox 59 Morning News will be airing our story either Monday or Tuesday between 7-9am....I am not sure what pieces will get edited out, but in case this piece doesn't make the cut I want to let you know what Tony said.....He was asked "what are your hopes". He thought for a second and said, "I am still hopeful that I can turn this thing around. If I am able to do that I would love to write more and to maybe be able to be a motivational speaker and encourage people to never give up no matter what the circumstance."

The funny thing I have learned about life throughout all of this is that other people's lives often appear better than your own. We all deal with struggles in life. Some struggle more publicly than others. But I ask you, whatever the struggle in your own life that you are dealing with, how are you facing it? I would be so proud and honored if all of you reading this evaluated a difficulty in your life that you are facing through the eyes of Tony. How would he see it? Are you still aware of the blessings in your life or do you only focus on the negative? Do you offer support to others when you can? Do you listen to your friends without judgement? Do you take enough time to play with your kids? Do you tell your family you love them everyday? How do you handle the difficulties in your life?

I know how Tony would.......

It's been a few days

2009-09-01T22:15:00.003-04:00

Hello everyone. I am writing for Tony tonight. One would think that by not going into work you could get a lot of things done right? Not the case around here it seems. The Sept.10th fundraiser is right around the corner, so the committee has been hard at work with several phone calls and emails made each day. Fox 59 news reporter Angela Ganote is coming in the morning to tape a segment on our story (thanks Ty Gerig) and to promote the event. Eddie White will be promoting the event on his Sports Talk Radio Show starting Sept. 3rd.

Thanks to all of those people at Adidas-Reebok that have been key players in getting some of the ebay auction items finalized....more details on those will be released at the end of this week....there are some phenomenal items donated once again!

Tony continues to say "I'm not giving up" and I want to make it clear to everyone that he is fighting the hardest he has ever fought in his life. He is an amazing man. People keep telling me that I need to spend as much time with him as possible. I know that, however, I usually tell people that I have been blessed to share 11 amazing years with him....all of the trips that you all supported us in being able to take over the last year and a half has filled both of us with smiles and great memories. We are so fortunate to have had that to share with each other. I tell Tony all the time "I'm glad you picked me" because I still feel everyday that I am one of the luckiest women in the world. He is the best husband, father, son, brother and friend anyone could ask for.

I see his gentle spirit in each of our children and I am so proud of the way they are developing. I talked with our four year old son tonight and told him about Tony's health situation. We had the official talk with Ashley a while ago, but with Will being so young we did not have the same talk with him. It is interesting how cancer works. Children understand so much more than we give them credit. They have seen the slow down in their daddy over the past month and a half and are so use to seeing him hooked up to an IV pole.... that's just the way it is in our house. Will was very sad to hears of daddy's "boo boos" and cried, but he and Ashley and I talked it through and the conversation ended well.

Not the talk any parent wants to have with their child, but they deserve that respect and we have always told them we would be honest with them. We want to protect them so much from pain and sadness, but not telling them the truth is not the way we wanted to do this.

Tony takes many more naps during the day. Dr. Jacob feels that his high bilirubin count may be a sign that the masses may be growing in his liver. She has told him not to take the chemo pills that he was scheduled to begin this week. In her words, "it's just to much for him right now". The visitors continue to be a steady flow, and the outreach of kindness continues to grow. Our friends and neighborhood deserve the recognition that I hope the news segment can give them.

Having said that, thanks to all the guys for coming to our house for the 8th annual Feller Fantasy Football Draft this weekend, thanks for the meals (they are a tremendous help to me), thanks to those of you running errands for us and for all the phone calls of support, thanks to all of the family members who have come to offer support, and thanks for all of the prayers that I know are said everyday for us.

I need to get to sleep now.....I love watching him sleep because he looks so peaceful, but now it is my turn.
My love to you all,
Crystal

Thank goodness for comfortable chairs...

2009-08-26T21:24:00.006-04:00

Still not getting the relief I am hoping for with the water retention, but on the positive side the chair we brought up into our living room remains rather comfortable and we have become a fairly decent pair.
I'm noticing that I need a couple of good naps each day which I believe comes from the pain meds, but everything else is really no different or no worse. When the pain comes it is usually in my lower back because it is taking a beating trying to support my back all day and night. I try to get up every couple of hours to stretch but after about ten to fifteen minutes my chair calls me to tell me to come put me legs up.
I have a conference call with Dr. Jacob tomorrow because I'm supposed to start some chemos soon and can not really imagine doing that right now. I need to get her take on this and see if she has an suggestions on how to start reversing this water.
There has been some very discouraging moments for me, but I'm really trying to stay positive. The visitors continue to help and we seem to have just the right amount of guests where I'm not overloaded, but get to have some really good visits.
More updates to come...

Love,

Tony

Status quo...

2009-08-23T08:57:00.004-04:00

Through my journey with cancer I have always said that there has been so many positives that have occurred with my diagnosis. I have learned so many things about myself, about others, about how to be a better husband, father, son, brother and friend. I have learned that forgiving yourself and others is best way to get through tough life lessons. And right or wrong I've always felt like learning these lessons help contribute to the healing process. Looking back five years ago I am no where near the same man I was back then. Of course, I'm also not sure how many more "lessons" I have, because I'm ready to be cancer free and start living a "normal" life again (if there is such a thing). None the less I'll take them as they come.
I received a letter from an eight year old little, Clare Kitchin, this week. I hope she doesn't mind me publishing this letter, but I feel like this goes beyond a little girl and a cancer patient her parents know. Her letter reads as follows:
"Dear Tony Feller---I told some friends to pray for you. I really want you to feel better. My mom told me you were having cancer so at my 8th birthday party instead of presents I asked for money for your treatment. There were 10 girls that brought you money and here they are (there was a picture of all the girls)"
Needless to say a very touching card from a little girl with a tremendously big heart. Her father and mother, Greg and Stephanie, should be very proud of her, as am I, (not because it benefited my cause) but because she seems to understand as such a young age that a sacrifice in your life can make a difference in anothers. Giving up presents at age eight isn't easy.
Broken record as far as my health is concerned. I feel good, just still lots of fluid. Still finding it difficult to tell if we are making progress of not. Did some more IVs yesterday and last time I did those the next couple of days seemed to be better. I seem to be a little more tired than usual, which isn't the end of the world but would like to be a little more alert than I am during the day. I've had to stay on top of my pain medicine mainly because of my back pain from not getting up much. Getting up helps and I try to do that as often as possible, but my feet and legs swell up quickly when I'm up to long.
I'm obviously ready for a few more breakthroughs on the water retention, but I'm holding myself together the best I can mentally. More lessons in patience I guess...

More updates to come....

Love,

Tony

I haven't disappered....

2009-08-21T09:07:00.009-04:00

I can't believe that my last blog was Sunday and I truly apologize for those that have no idea of my status. We are getting so much support I really want to keep people up to date.
Thankfully there is no big news. I'm still working hard to reduce the amount of the fluid from my abdomen down and (knock on wood) I think we are making some progress. My day to day motto hasn't changed so I'm keeping any positive results in perspective until we get to the point where I think we might have this tackled. Mentally though, seeing some progress has really helped. Sleeping at night seems to be getting easier and getting up for my short walks also seem to be getting easier. What little pain I have is under control (I'm not much for pain medicine) with very low doses. I'm sleeping at night with the assistance of an anxiety pill just to sort of relax me before I go to bed. Bed time continues to be the most difficult time for me because if I don't sleep the nights become so long. Recently I have been very blessed with good night's sleep so no complaints. I've started back on most of the protocol from Germany which I think helps all of this as well.
There continues to be a steady stream of visitors that come visit, but not to many that I am feeling overwhelmed. I do get tired during the day so I have got to have one or two short thirty minute naps to get me through the day. My body continues to be very good to me, but I also know I need to give it rest to do its job as well. So overall, I think the report right now is that I am doing well, my spirits remain high and I feel like we are making some progress each day.
On a different note, I can't go on much longer without recognizing my Fraternity brothers and how much they have rallied around me, especially for the fundraising event Sept 10. There are guys coming in from all of the country for this, some of which I haven't seen in over ten years, some of which I never personally knew (because they were older or younger than me when I was in college). I am more than humbled by not only their willingness to come, but also their generosity in the fundraising event itself.
If I've ever talked to you personally about my fundraising events you know I would tell you that these events can be difficult for me. Don't get me wrong, the fundraiser last August may have been one of the best days of my life, but it was because of all the people that came and the fun we had that night. It is an overwhelming feeling having so many people behind you and showing their support whether it's a close friend you keep in touch with, someone you haven't spoken to in years, or someone that I may not even know. My life has been blessed with so many good people, I know without a doubt that I would not be here without all of that support. So for the fundraiser, know my main goal is to have people show up and enjoy a night out with friends---the fundraising part will take care of itself. To my Fraternity brothers....I want to thank each and every one of you whether I see you on Sept 10th or not. What you guys are doing says so much about the type of guys we had in that Theta Chi house and I'm proud to be a part of that group. Looking forward to seeing each of you that are coming.

More updates to come....

Love,

Tony

Very tired, but a quick update regardless...

2009-08-16T20:35:00.004-04:00

Whew.....what a weekend. I guess I need to be careful what I ask for because Crystal and I were blessed with non-stop visitors this weekend. I want to thank all of you that stopped by because I had a great time. No doubt I was worn out each evening, but I don't think I "over did it". The house was "alive", we had lots of laughs and overall the company just gave me a boost each day to make the most of and enjoy each day.
Saturday brought some Fraternity brothers that I have not seen for possibly ten to twelve years along with some of my closest high school friends. Many of the "neighborhood gang" was here Friday night to do some partying and play games after some of Crystal's family and my family stopped by in the afternoon. Eric and Doug, who went with me to Germany flew in from Charleston and Phoenix respectively for the day on Saturday along with my good friend Trevor Katz, who flew in from D.C. Today my aunt Kathleen was here and I made it out of the house to celebrate my nephews birthday at Crystal's brothers house. I had a great weekend and had a really hard time getting "down" with everyone around. Thanks to everyone for taking part in the weekend...our recycling bins haven't been this full with bottles and cans in a long time.
The schedule remains busy this week, but the days will be much slower which will allow me to get a little more rest and work done during the day while I visit at night. Looking forward to seeing everyone that has called to come this week!!
From a health standpoint I feel really good. Not sure if it is because of all the people or because my body is doing better, but I do really feel good. My biggest problem continues to be the water retention from my abdomen down. If I could get a little relief from the swelling I would really be doing well. I am on some pain medication, but not much, just enough I think to take the edge off. I was getting a little frustrated yesterday from the swelling because it didn't seem to be getting better, but I saw a few signs today that maybe we are making some progress. A day at a time...
Crystal and I had a conference call with Dr. Jacob and she remains positive with what we are doing and believes that this swelling will subside. Not sure how long it will take, but she thinks the water will eventually work its way out--this is what the removab is supposed to be doing. She wanted me to get back on her protocol as soon as possible since some of things she wants me to do may help. She also talked to the Removab lab and the fluid she sent in from my abdomen was cancer free and from some of the tests she performed my immune system seems to be getting stronger.
Lots of positive news, but again, until I see some results it's going to be difficult for me or the doctors here to believe her (probably a little harder for the latter). So again, I'm taking a day at a time and we'll see what happens.
Overall the report is pretty good. My spirits are up, I feel good with the exception of the swelling, and I'm having a great time with family and friends.
More updates to come...

Love,

Tony

Home and new status...

2009-08-14T07:37:00.004-04:00

Crystal and I apologize for the lack of an update for several days. This has been a physically and emotionally difficult week so we've had many people here for support to help us through.
I'll try to catch everyone up quickly, without being to long winded.
Even though the doctors probably would have sent me home on Tuesday, I told them that I would not leave the hospital in the condition I was in. I was having some new chest pain, everything below my abdomen was extremely swollen so I didn't really feel like going home was a good idea. Once all the tests results came back negative for anything new, I decided to load up on the pain meds to get me through the night and maybe getting home would be the medicine I needed to really pick me up.
I felt a little better Wednesday morning, got up and showered which is always a big accomplishment and decided it was time to go home. Even if more could be done for me, it wasn't going to be done at the IU Med Center, so I told the doctors I was ready to go home. We finalized our hospice program on Wednesday morning which basically is a program that is a middle man between my doctor and myself from a comfort control aspect. We now have a nice new bed in our living room that I sleep in, they send me all my meds so we don't need to go to the pharmacy and they have nurses, counselors, pastors, etc. come in as you need them to make sure me and my family are comfortable, both physically and emotionally.
Honestly, I didn't think this would ever happen. We've been very sad just with the thought of having this type of program, but it also doesn't mean I can't turn this around and soon have that bed out of our living room. The discouraging part is that from Dr. Jacob's standpoint things are going okay (we think we have stabilized the disease), but here in Indiana there is more gloom and doom. They are not sure any of my current symptoms will get better and may even get worse. So I think what Crystal and I are doing are getting prepared for the possibility of this not getting better, but still remaining very, very hopeful that this can be turned around. The treatment in Germany is experimental so I don't think any of us know exactly what is going to happen.
Bottom line is I think if you have read my journal long enough or know me that I will NEVER give up on beating this, but at the same time there has become a reality of the situation where it only makes sense while I am feeling good to make sure any plans that need to be made are made. I am literally taking a day at a time, knowing I will have some good ones and some bad ones and go from there.
Since I have been back from the hospital I have felt really good. I really do think getting home made a big difference. My biggest problem remains my walking. I am so swollen that I can barely walk. I still get winded walking short distances, but my breathing is much better. I am taking some pain meds to keep some of the pain under control and it has been working.
I have decided that what I want the most right now is to open up the house and have people around. If for some reason I don't snap out of this I want to make sure I enjoyed myself as much as I could. My wish thus far has been granted and we have had people around all week, people coming in this weekend, etc. We continue to fill up the schedule which has been great. Something for me to look forward to each day, keep me smiling, and positive.
I'm still on some antibiotics and once those are complete going to continue my Germany protocol and plan to be out there in October feeling much better just as planned.
Not sure how people will take this blog, not an easy one to write. We remain very hopeful, with an attitude that we will never give up, but also don't want to ignore the reality of the current situation. I love you all for the continued support given to me, Crystal, Ashley and William. We are certainly blessed.
More updates to come...

Love,

Tony

Racking up the points at the Marriott....

2009-08-10T20:30:00.003-04:00

If I have to be at the hospital, I guess I'm fortunate that I'm in the new hospital rooms at the IU Med Center. I've asked if I receive Marriott points to stay here, but unfortunately I don't. Although it is nice, I also say that it's really sad that we need to build these types of structures in the US for our cancer patients. I know we can't help everyone, but the more I am here the more my eyes are opened to how tunnel visioned we are here with our cancer care and how sad it is we don't have cures for so many cancers. Tonight is not the time or place for me to get started, I just find it discouraging.
So today cancer took away my ability to see my grandmother's funeral and to go to the annual school ice cream social to see who Ashley's teacher will be this school year. Tomorrow cancer will take away my ability to watch my daughter get on the bus to start her year as a second grader. If cancer doesn't know me by now, I may get discouraged or disappointed by these things, but in the big scheme of things I'm not going to let it set me back. I'm not going to let the disappointment outweigh my ability to stay strong and fight back to get back on my feet and start swinging again. We've had some tough days lately both physically and emotionally. Crystal and I spent some time today talking and although both of us are a little more scared and discouraged these days, we have a lot of fight left in us.
The biggest problem right now is my swelling. My legs and ankles are huge and I'm not really sure why we can't get some of that to start going away. My energy levels and coloring is better, but my urine is still really dark which is a concern and the pain in my right side has returned.....I'm hoping we don't need a "do over" on the ERCP procedure I had on Saturday. They want to try to send me home tomorrow, but I'll have to wait until the team of "white coats" come in tomorrow earlier than rooster crows. I'm off to bed...another restful night in the Marriott.
More updates to come....

Love,

Tony

No witty words, just an update

2009-08-09T21:15:00.005-04:00

Today is Sunday...it is weird how you forget what day it is when you sit in a hospital room all day. No exciting news. Tony slept all day yesterday from bring put under for his stent replacement. That went well. Today he woke up with some back pain which he has not experienced since before we went to Germany. He got the blood transfusion to boost his hemoglobin and iron levels. His bilirubin count has gone down to 10 which the lower the number the better. His skin is returning to a more normal color. His eyes are still yellow, but that will improve as the days go on as well.

They have given him some Lasix (don't know if I spelled that right?) to help flush out all of the fluid that he is retaining. His legs and feet (and other body parts I won't mention) are very enlarged due to fluid retention. The down side to lasix is he has to get up to go to the bathroom every 30 minutes or so.

The blood cultures all showed different kinds of bacteria in his bloodstream, so he is still on 3 antibiotics. He has not had a fever, but they are closely monitoring his heart rate (which has run a tad high at times) and his blood pressure (which has run a tad low). They are looking at at least Tuesday they think before he gets out of here.

He cant be released until his WBC is normal, no longer showing signs of infection, remains fever free once off the IV antibiotics, and has normal HR and blood pressure. Ashley will be sad that he will not see her get on the bus for her first day of school Tuesday, but she will understand.

Our kids are kind of resilient like that. They came to the hospital today to see Tony. Even with 6 bags of IV's going and a blood transfusion going on...not one single question. This is our kids "norm". I really believe that has been such a part of why they are such sensitive kids. Tony has taught them many things and their sensitivity is my absolute favorite.

Tony really wanted to go to his grandmother's funeral, but that was just not possible. His sister, Tonya, and her three kids have moved back to Indiana. She came today as well to see him. It is good to have her back as she is another support person for him emotionally!!

That's it for now....time to run..more posts tomorrow.
Love to you all, (thanks Lisa for watching the kids today and to Sherri Kraft for dinner Monday:)

Crystal

Finding out the facts...

2009-08-08T10:32:00.004-04:00

Quick update to everyone~
Tony was up about every 1.5 hours throughout the night....welcome to "sleeping" in the hospital right? He had another breathing episode @ 3:30 this morning which lasted about 20 minutes. It's hard to sleep here because of all the nurses have to check on him throughout the night...but it is comforting to be here so closely monitored.

His tests from yesterday indicated his stent was clogged. The ERCP doctor came in at 8am and said he would be ready soon. The good news about being here on a Saturday is that there really is not the back up of patients that you run into during the week. So by 9am they came and took him down.

The nurse just told me that it went well (10:30am) and that they replaced the stent and got rid of tiny stones they found stuck in the very tiny biliary vessels. These stones would also add to the jaundice and discomfort. He should be up to room in about a half hour.

The IU med center has a very nice recently opened addition to its cancer center. Our room is very nice and much more comfortable then we usually get here. The nurses and residents have been great. A special thanks to the best nurse in the world, Kellie Dann, who helps out Tony's oncologist here. She played a critical role in getting Tony into a room ASAP. She is a special angel we have here on Earth.

Tony is still hoping that he can go to his grandmother's viewing tomorrow from 4-8pm. I am not sure if he will be released by then or if it is even a good idea that he go. We know he has an infection that he is now on antibiotics for, and his immune system is highly compromised at the moment. Personally, I have told him to shoot for making the funeral Monday morning. He is stubborn (but so am I) so we shall see????

Our kids were well taken care of yesterday (thanks to all the great dance team moms) and treated to dinner and ice cream by the Gerigs. Tony's dad and stepmother took them back to Richmond with them. My plan is to get them Sunday morning after mass. We have decided that they will not be going to the calling. It was a tough decision, but one that we feel is the right one at the given time.

Thanks for all of your well wishes and kind messages. Tony laughed at me last night because this hospital has blocked the use of facebook from its internet. He said I may experience withdrawals (and he was kind of right...ha ha). I am able to get facebook messages on my phone, so thank you to all of you have have sent us messages.

That's all for now. We will update more as we know more information.
Love,
Crystal

Two hellava days...

2009-08-07T20:40:00.004-04:00

Thursday started with a phone call from my father letting me know my dear Grandmother had past away. One of those unexpected moments although her death was not completely expected either. She had a fairly severe heart attack a couple of days ago, but was doing well and we all thought she might "snap" out of it. She is and was an incredible woman who lived a very happy, loving, quality life---I will miss her dearly as will so many others. Her and my Grandfather prayed for me daily and she wanted so badly to see her grandson get well. Now she'll just have to watch from a different place.
Besides that emotional hit, I actually felt a little better Thursday. I was able to get up in the morning, shower, and eat some breakfast (big accomplishment, huh). Even though I probably could have forced myself to go into the office for a few hours I really didn't want to push it and knew I could have a productive work day from home, which I did. There were no naps, I ate well and generally I started to feel like maybe I was turning this thing around.
Last night I decided to go the store and get some energy / protein drinks since I ran out of the ones from Germany and I obviously want to keep my huge volume of muscle mass. I may have cancer, but I don't want to give up my huge biceps either. Unfortunately the trip outside caused a pretty major downward spiral. When I got home I started having some shortness of breath and muscle spasms in my chest that were causing some severe pain. Crystal needed to help me up the stairs to our bed and we both pretty much knew at this point that something was not right.
Somehow I made it through the night if you can call it that. Neither of us slept very well and by 6:00am I was having severe chills along with a fever. As usual, Crystal went to work. She was immediately on e-mail, sending Dr. Jacob a message telling her what was going on. She replied instantly and basically said get to a hospital to draw blood, you have an infection that needs to be taken care of immediately. By 9:30 at was at the IU Med Center and by 10:30 was admitted. As much as I didn't want to stay, I knew we had to figure this out and the only way to do it was to stay and get all the tests ran I needed.
Bottom line is I do have some sort of infection, we'll know for sure tomorrow when the blood cultures come back, but they have put me on some generic antibiotics just to get me started. At the same time, we think the stent we put in my biliary ducts may be clogged already so we are pretty sure I'll be doing another ERCP procedure tomorrow to unclog my ducts.
None of these things are serious if we get them taken care of, but I've pretty much turned a nice color of yellow again in the last two days and obviously any infection needs to be taken care.
I've had several tests today and will do some more tomorrow, so we'll know more as we get through the next day or two.
My spirits are up, I know we have many positive things occurring, just need to take care of these first. Crystal is with me and the kids are with my dad and Karen so everyone is doing okay. We appreciate everyone's well wishes...another bump in the road.
More updates to come....

Love,

Tony

Slow going...

2009-08-05T19:51:00.003-04:00

I am physically spent. Sunday I tried to do what I could, but spent the majority of the day on the couch. Monday I went into work for several hours to try to catch up on some loose ends. Tuesday came and I hit the wall. My goal was to go to my naturopaths and receive some much needed IVs, but I couldn't do it. Coming up with enough energy to walk to the couch to the restroom was about all I had in me. I slept off and on, and was able to get some work done and stay as focused as possible. Last night my pain came back so I didn't sleep great and woke up feeling fairly crummy again. My angel, Aunt Betty, drove up to the house today to sit with me and make sure I was keeping fluids in me, eating, etc. I know my body is really struggling right now...I can't imagine what my liver enzymes and bilirubin counts are, but from history alone I can probably guess they are very high.
Tonight I feel a little better, but wouldn't want to be running any marathons at the moment. My abdomen is very swollen and full and I get winded easily when walking around the house. All of this will pass I know....I'm trying not to get depressed, knowing this was probably going to be part of the drill for the first week or so.
Good news is my swollen legs and feet are getting much better. Wearing shoes shouldn't be as big of an issue. We continue to have positives and we'll hold onto those as we get through this not so fun period.
The outpouring of support remains steady and is much appreciated. Thanks to the Carr's for the unexpected meal on Tuesday, the Norris's for mowing our lawn today, the Pruitt's for helping out with our kids today, Donna Turner for running all over town today getting my pain meds, of course Aunt Betty for driving here and making dinner and Aunt Carol for helping us out tomorrow. These "little" things mean more to us than any of you know.
I wish I had a more uplifting update....this will get better. More updates to come...

Love,

Tony

Back home in Indiana...

2009-08-02T18:43:00.003-04:00

I'm sure most of you know by now, but we have made it home. Long, long, long trip home, but somehow we survived and are now at home resting and trying to slowly put our "life after Germany # 4 into place". As always there are so many things to do when we get home, but we are getting better at resting and prioritizing what needs to be done when we get home. I'm sure it will take a week or so until we fully get back into our everyday routines.
I'm not going to complain to much about the trip home because it wasn't the airlines fault. There is a time to get upset and a time to be thankful for everything they try to do. Unfortunately my circumstances of needing some medication and rest wasn't ideal, but they accommodated us as well as I could expect. Waking up at 6:00am Germany time on Friday and arriving home at around midnight (Germany time) on Sat night / Sunday morning makes for a long couple of days. If you would have told me I would have been able to survive a 42 hour long trip home before we left I would have told you there is no way. There were a couple of times where I thought I would have to ask for some "special assistance" in the airport, but Crystal hung in there with me and we slowly did what we needed to do. I don't consider myself "handicapped" and become pretty stubborn when it comes to asking for wheelchairs or those terrible carts that beep so loudly the entire airport can hear you coming.
Obviously we were not awake for 42 hours straight either. We both were able to doze off here and there on the flight to Atlanta, in the airport Friday night, and we slept about four hours in a hotel Friday night. Never "solid" sleep but don't want to make the impression that we never slept.
We woke up early Saturday morning, rented a car and decided we were going to drive home since the earliest flight was 9 pm that night. After a quick breakfast Crystal talked me into taking a quick shower thinking it may make me feel better. As I was in the shower she decided to make one last phone call to Delta to see if there were any flights that we could get on earlier. Long story short, she talked to a very nice gentleman, gave him our story and soon he had us on a direct flight to Indy leaving at 2:30 pm. He said we needed to get to the airport early since we didn't have seat assignments, but did confirm that we would be on that flight. Long story short, we did get on that flight and landed in Indy at 4:30, without having to drive. The stay at the airport was fairly brutal, I didn't have all my medication and was having some pain, but made it through the morning and afternoon. We made it....
As usual, nothing better than seeing the kids when we arrived in Indianapolis. They were a little wound up last night, but we talked them into going to bed with us a little early by allowing them to fall asleep in our bed. I think we all slept fairly well...I slept, but was almost to overtired to sleep. My pain returned by mid morning, so I got up and started to get the medicines I needed in my system to combat my symptoms. As of tonight everything seems to be stable....I was ready for some issues and had everything addressed with Dr. Jacob before I left. I've had a couple of naps today, but also trying to do as much as I can. My feet and legs are almost so swollen to put shoes and socks on and I know I'll be going through a tired spell this week, but I feel like by the end of the week I'll be turning this around.
I feel like I'm completely rambling so am going to end this for now. Bottom line is we are home and readjusting again. Time will tell how "successful" this trip was, but I think we all believe it was a positive one. Thanks to everyone once again for all of the support while we were gone....this has been a tremendous team effort from so many people....one I couldn't do alone. Somehow, someway I still believe this will someday be behind us.
More updates to come....

Love,

Tony

You Gotta Be Kidding Me!

2009-08-01T05:24:00.002-04:00

Got to Atlanta fine..they delay us for 4.5 hours then say the flight to Indy cancelled. We waited in line for 1.5 hours they could not get us to Indy, Cincy, Louisville, Dayton, or Chicago that night or Sat. morning. They have us flying in at 11:45pm Sat. night....no way!!!! I went ape a**!

They put us up at the Marriott...I have slept 5 hours in the last 26 and now I am getting ready to rent a car and drive from Atl. to Indy. Ashley was in tears in the phone wanting to see us. I am not missing another night putting my kids to bed!

I will get my luggage too---they say I can't----they don't know me! I will get my luggage. It has Tony's meds! HIs feet are so swollen he can't get his shoes on. More later.

There's no place like home....

2009-07-30T15:54:00.002-04:00

Today we wrapped things up at the clinic with Dr. Jacob and Dr. Fredrickson. Nothing new to report on their end. They did a conference call with Tony's oncologist from the IU Medical Center just to make sure everyone was on the same page. We also wanted her to explain the new medication (Removab) to him so he got a better feel for what is suppose to do. Dr. Helft has always hung in there with us...he is a wonderful man. Whatever helps Tony he is willing to do if he can.

Dr. Jacob want Tony to return in October...I told her if he missed his daughter's birthday again this year because of being in Germany, we would have one very sad little girl. Tony had to miss our anniversary, my birthday and Ashley's last year because of treatment over here. She said early October would be fine...as long as he is home before Oct. 21st we will be fine!

We left the town we have come to know over the past year today and headed to Munich where we are staying in a hotel near the airport tonight. We have to be at the airport around 8 am and did not want to deal with the drive in the morning....8 am can't come soon enough for the both of us!! We are looking forward to hugging all kids all night tomorrow night!

That's all for now...we are going to bed now....see some of you soon. By the way, we want to send an extra special thank you to the fundraising committee who continued to meet while we were gone. They continue to collect and seek out donations for the fundraiser in September and we couldn't be here doing this without all of their efforts!!!!! Thank you Brenda, Gail, Anne, MeMe and all of those who have donated items for the raffle baskets.

Love,
Crystal

I'm back....

2009-07-29T11:14:00.003-04:00

This has been a rough trip for both Crystal and I from both a physical and mental standpoint, that quite honestly have not felt much up to writing. Crystal is doing a great job trying to keep everyone updated through this journal and via e-mails (and facebook of course). Today was much like the others where we opened the infusion room and left seven hours later as the lights were being turned out. I'm definitely getting my money's worth on this trip with all the medications she is giving me.
I had to wear a chemo pump home last night which we thought would be completed by today, but no such luck. Looks like I have another sleeping buddy for one more night. Don't really like the third party, but this is a low dose and Dr. Jacob wants it to run slowly as well. I feel fairly good overall, as Crystal mentioned yesterday, I am starting to regain some of my energy. We have a feeling that will dip again in the next few days, but soon will recover since we can say with almost certainty that the Removab antibody is the cause of all of this. I can't lie either and say I haven't been a little anxious about drawing the fluid from my abdomen and getting another dose of Removab and chemo. Getting those two things behind me has probably helped my mood as well yesterday and today.
I look like the Pillsbury Dough boy, and I know the steroids have played a huge effect on my emotions here, but besides the full bowel (sorry if TMI), we think we have answers for everything. I'll be going home with lots of medications to help keep me stable and will keep my fingers crossed that the conference call we have scheduled tomorrow with my doctors in the States actually takes place. Just like Dr. Jacob here, I know Dr. Helft and Dr. Teverbaugh are very busy, but we have it on the calendar so we'll see. Whatever happens will happen, but one of my big goals this trip was to make sure we all knew and understood what I am doing and why I am doing it---along with ways to combat side effects.
One more full day of treatment then back home. As usual, I miss the kids but always a little hesitant to leave without feeling 100%. Crystal has hung in there with me, I know this wasn't the trip we were hoping for from a "getting out" perspective and unfortunately I slept so much and was a tad moody early on that we didn't get to have the laughs I was hoping to have. We're going to try to get out to SeaFest tonight which is yet another festival they have here. Seems like they have had about three festivals since we have been here. One of the staff members at the Klinic has a sail boat so we are going to try to avoid the crowds by being on the boat. One day we'll get over here for a little more enjoyment, but hoping tonight can sort of end our trip on doing something besides dinner.
We know we have lots of people praying, rooting, and thinking about us at home and we do appreciate it more than you know. The power of a little note goes a long way when times are tough.
More updates to come...

Love,

Tony

Nothing Exciting....

2009-07-28T15:31:00.003-04:00

I do not have much to report today. We spent our usual 7.5 hours in the clinic for his infusions. He made it all day without taking a nap though...he only took an hour nap before dinner. At the clinic Dr. Jacob did another ultrasound to see if he had "cleared out" enough to see more of the liver necrosis and to find a spot to aspirate some of the fluid. Much to our surprise, he is still "full". This is so odd because the meds she gave him over the past two days have really helped in that department.

He is able to eat a full meal now without getting so uncomfortable, so she thinks this is a good sign that the liver size has gone down a little bit. Also, he blood counts have come back exactly how they she predicted they would based off of the recent treatments. He seems to have a slight increase in his energy level(again blood work would agree with this, but the counts are still elevated).

I have learned one thing for sure. It's not a good idea for one to watch their loved one get a needle inserted 3 inches below their belly button and watch fluid being drawn out. For those of you that know me and have read the blogs from this winter, you know I am not a fan of needles. Strangely, I love those medical shows that show surgeries being performed! I think I am to close to this situation though, so a little woozy is a good way to describe my feeling at that moment. She was only able to extract a large syringe full of fluid-not enough to give him any relief, but enough to have it tested to make sure there are no tumor cells in it....she is confident based on the color of it that it will not.

She was glad to "get in' with the needle in the area that she did because she was able to put the Removab directly in like she wanted (versus through the IV like the first time). Ok, how good are you...let's see....who knows what the Removab is going to do?????

Yup, cause more swelling internally over the next two days. She gave a high dose of cortisone though today to try to keep it down as much as possible. She explained to us like this, "Tony I have to do something while you are here to work against the tumors." With no Prof. Vogl this trip she needed to get 2 treatment of this in. She thought the pros outweighed the cons.

He is also on a 24 hour mitomycin (sp?) pump tonight---he has to sleep hooked up to it all night. It is a type of chemo that his chemo sensitivity test still shows his tumor cells are receptive to. The doctor in the US would not put him on it as he did not agree with the use of this medication. Dr. Jacob does not expect any ill side effects from the low dose chemo, but perhaps some pain and fever from the Removab. I am suppose to give him a shot for the pain if needed tonight (did i mention me/loved ones/and needles before?)

So far so good tonight. We enjoyed a nice dinner with our friends Adam and Julie who we met here in October (from Florida). No pain, no fever, so we hope that remains. I will write more tomorrow.....thanks for all of the positive messages you have been sending. We love hearing from you all. They bring a smile to our face just when we need it the most.

Love, Crystal

Waiting for some action.....

2009-07-27T05:44:00.005-04:00

I never thought I would want Tony to spend a night "on the toilet" so to speak, but that is what we were both hoping for last night. Two medications were given to him late in the afternoon yesterday to help "get rid" of all of the stuff inside. To look at Tony's stomach right now one would think he is about 5-6 months pregnant! Maybe all of these ultrasounds have been wrong about the pregnancy thing huh??? So stomach is very distended an looks like it could "pop" at any given moment. He is still eating well, but he gets uncomfortable after a meal because it adds to the feeling of fullness he has 24/7.

Me, being the medical doctor that I am spent time last night on the net typing in different combinations of his symptoms on medical sights.....then Bingo!! I got it!!! I found exactly what I was looking for....why is all of this happening if it is not tumor growth??? By the way, Prof. Vogl talked to Dr. Jacob this morning and confirmed with her that since the treatment in May (his chemoembalisation + the new Removab antibody) there has been no new progression in his liver or lungs (insert a drop to the knees moment and a "praise God" chant).

There is something I found called "portal hypertension". Tony has most of the symptoms (black tarry stool---which he had initially upon arriving, enlarged spleen, enlarged liver, ascites---which are an accumulation of fluid in the liver or abdomen, low platelet count,etc., etc.). As to not offend Dr. Jacob, I asked her if this could be a possibility. She said "yes, absolutely"...you will have to look up portal hypertension because it is too difficult to explain on here, sorry.

Other issues going on: The Removab is doing what we want it to do, but almost too fast. The necrosis is happening so fast that Tony's body is not able to keep up with getting rid of the fluid and dead cells that the necrosis causes from the tumor sites. Tomorrow she is going to try to aspirate the fluid again from his abdomen and from the largest necrosis area in the liver to provide some relief. She has been giving him cortisone for the last 4 days (steroid) which in turn causes ........you guessed it-fluid retention!! She has to do this though in order to keep the liver swelling to as minimal as possible.

Next issue: she needs to give him the Removab again before we leave because we can not get the medication anyplace else. This time her plan is to give it to him directly in the liver (instead of via IV as he did last Tuesday) when she is in there attempting to aspirate the necrosis fluid.

She wanted to give him as much as she could while we are here this time, but we all voted against the Vidaza shots (the 4 shots that make him very sick to his stomach) for this week because these are something we can bring back with us (thanks to Carol Haney our neighbor who is a nurse!). We also voted against extending our trip a week in order to see Prof. Vogl to get another chemoembalisation. At this point she feels it would be way to much for his body to take on at once. Remember the Prof. Vogl treatment aids in the necrosis in the liver because it kills the tumors internally. She wants him back in October to do Prof. Vogl first and then to see her.

She confirmed his iron level is now back to normal, but will continue to give a little intravenously this week. No problems breathing since Friday. She definitely thinks that is all related to the extreme pressure internally on the organs and how the are pushing up on his lungs.

If Tony is not able to "get rid" of some of the issues causing his swelling tonight by the same methods that were attempted yesterday, she wants to assist in this via meds in an IV that are sure to do the trick but without depleting him of minerals. You know me, that is not okay with me.....because if he is not "emptied" by tomorrow she wont' be able to do the aspiration of the fluid in the necrosis area and in the intestinal area (because the stool literally blocks her view on an ultrasound and she has to see to insert the needle) and she would not be able to inject the Removab directly.

So. I am waiting now to ask her to just give him the med via IV now so we don't screw around and waste another day!!!! That's all I have for now....sorry I'm a little long winded, but women typically are more detailed then men, ha ha ha.

I will post more info as I know, until then pray for "bathroom success" here in the motherland:)

Love,
Crystal

The blood work is in....

2009-07-25T10:08:00.002-04:00

Hi all, it's me again, the fill-in writer. Tony would love to be the one posting these, but he is still very tired. He slept great last night. No difficulties breathing. He actually woke up at 6am and was wide eyed and ready to go. After yesterday's events, we literally closed the clinic down. He slept until 5 pm after all of the Valium they gave him. I woke him up, we called the kids, got a bite to eat and back to the hotel it was. I know he was hoping for time for us to go out and see some things, but he is just to tired to take that on right now.

The fill-in doctor (Dr. Jacob returns tomorrow) went over some of his labs with us today. The way the Removab (antibody med) works is that it for sure spikes a person's liver enzymes. A few days after the doc should see them start to go back down. This is what happened to Tony, but the enzymes are still not within the normal range (this explains part of the fatigue). Then there is the bilirubin. The higher the level, the worse you feel and the more tired you get. His was 4.8 2 days ago and now is at 3.4 (normal is up to 1.3). Again, this adds to the fatigue. The biggest factor in fatigue is with his iron levels. For a man, a normal iron level is at least 75 (based on what i found with my google medical degree on the internet). Tony's was at 1.5 two days ago and is now at 12.7. The fill-in doctor said normal range was 11.6-30, so I will ask Dr. J about this tomorrow.

They gave him an antibiotic yesterday in case there is any infection internally going on. He does not have a fever though. But his white blood level is going up a little, indicating that the body is trying to fight something off---uhhh, I think his body is trying to fight off the cancer, but i'm no doctor. However, his CRP count (which is an infection marker) has also gone up a little from 2 days ago.

Okay, okay, so what does that mean in a way we can all understand? It means that he is literally tired enough to fall asleep ON THE PHONE while talking to our kids during a 5 minute conversation. It means he sees the initial scene of a movie and asks me "how was it?" when he wakes up, it means "go get the car" so he only has to walk 50 yards to get in, it means he sleeps all night and after doing a few hours of work on the computer he is ready to sleep again.

It means as he sleeps, I cry wishing I could do something to make this all go away for him......

One of us will update more tomorrow as new information is learned.....until then.

Hugs to you all,
Crystal

oh crap..he spoke to soon!

2009-07-24T08:20:00.002-04:00

Tony updated below about 2 hours ago, but a big turn of events has happened. He had another episode of not being able to breathe again---full force. I think it even took back the "fill-in doctor" and nurses here. He said he was cold again...and then within a minute the convulsion like shivering begins. Once the shivering begins the deep gasps for air begin...and everything goes south. I know it doesn't help when we tell him to try and breathe slowly----he can't which is why he is gasping!! But, when he is gasping he gets very tense as I am sure it it very scary for him and the panic level rises in his face. Today the doctor had to give him 2 shots of Valium in his IV, put the oxygen on him, lay him down covered in heated wraps, and then a few minutes later he was out...asleep. The nurse said he has to get to a clinic or hospital if this is still going on at home...and no matter what he says get him there even if he tells me "no".

They thought the fish oil was causing the reaction, but he whispered "no" because he had it in May. So, they are not sure what the hell is making this happen. They all agree it is not a lung issue???? I am going to have to go with that for now. Having "no" answers to why is much scarier then knowing-even if the reason isn't always good.....I am off to sit by his bed because the nurses and doctors are done with him and said I could go in..Bye!
Crystal

Two out of four isn't bad...

2009-07-24T04:25:00.003-04:00

I'm back, but I want to thank Crystal for doing a fantastic job on the journal while I was "out". There is no possible way of explaining how tired I was the first two days and then Wednesday got a little dicey late in the day and into the night. I really didn't have the energy to write.
I think Monday and Tuesday I slept about 18 of the 24 hours in the day. The other six were trying to keep up with work, talk to Crystal and make some phone calls. I have had very few good nights sleep over the past two months and the flight over wasn't exactly restful so Monday night was like a dream day / night of sleep, one my body needed desperately. Unfortunately had some side effects from the Removab on Tuesday night, but slept okay. Wasn't as bad as my recent nights in the US, but not one without several hours of restlessness during the night. Crystal explained my Wednesday night which was fairly miserable, but in typical Dr. Jacob fashion gave me what I needed last night to sleep great again.
I'm not big on steroids, mainly because my muscles get so big, but they help my inflammation so much that 98% of my symptoms subside. I was also given a pill to open up my lungs a little which also did the job. Sounds like a small request, but sleeping on my side, with the ability to breath and through my nose even was a little slice of heaven last night. So here four days, two really good ones as far as rest and two not so good ones.
Dr. Jacob has some business to do today at the new Klinic so she won't be in today. Probably won't get to much information from the "fill in doctor", but there is not much I'm concerned about this morning. Dr. Jacob thought some of my liver enzymes would start to come down today and should start feeling better overall. As of 10:30 am, she seems to be right. Long day ahead of us, but I'll take it for now. We were going to start my Vidaza shots today, but think we are either going to skip them altogether or wait a few days to see how I'm bouncing back. She knows I can handle a heavy dose of medication, but also wants my body to stabilize a little before we continue our attack. I'm not arguing with her and am actually a little relieved. I want to be here for serious therapy, but this trip as I have said before is one where I needed to get back on track and give my body a chance to heal. We did so much therapy in May that I still don't think my body has had a chance to rebuild from the attack.
Both Crystal and I are still a tad confused on if all of what we are seeing is really positive, positive, or just so-so everything is stable news. I get the feeling that what the Removab has done is positive news. I know her and Dr. Friedrieckson have both been concerned about having to much necrosis at one time and I think Dr. Jacob is a little taken back at the amount I have. I'm not so sure she sees it as bad news, I get the perception she is a little more in shock. We have effected quite a bit of my tumor load, still have many more to tackle, but from my perspective I'm pretty happy. We'll get the news in the next few days on how this new dose of removab is effecting the cells as well.
I am so happy to be here. My excitement level was at its lowest going into this trip, but I really, really needed some relief and another boost of confidence. Once again, Dr. Jacob makes sense of everything, understands my needs, and explains everything in as much detail as we need. As much as I love her, I try to keep my anger level at bay wishing that I didn't have to travel so far to get these types of answers. More new faces this time from Asia, Australia, England, and US prove that I'm not the only one that feels the same way.
I want to thank everyone for the e-mails to Crystal and I. I want to thank those taking care of our children for doing just that----they are having a great time and helps ease the stress for us to be gone. Lastly I want to thank those on the fundraising committee for keeping the ball rolling while we are gone and for those helping out with our outside yard work---another huge stress reliever for us. Crystal and I are trying to enjoy the time together as much as possible, being together without many of our other everyday stresses has been good for both if us.

More updates to come,

Love,

Tony

"Oh what a night..."

2009-07-23T05:13:00.003-04:00

Yes this is a popular party song, but we were not partying in our hotel room at all! I would like to think of myself as a person who reacts calmly in a stressful situation, but I do not give myself an "A" based on last night. We were able to go down by the water and enjoy a nice dinner and returned to the room around 8:30, watched a movie, then Tony fell asleep. I am not able to go to bed as early as he is for some reason and last night was no different. Around midnight I decided to try to fall asleep and as soon as I laid down I could hear Tony struggling to breathe. I could tell he was not in a deep sleep, so I asked him if everything was alright.

He sat up and said he was cold, began shivering, and his skin was clammy. Then he began to literally gasp for air, taking quick short breaths. To put it bluntly, "oh shit" was what was going through my mind. I layered him in blankets to try to stop the shivering and got out Dr. Jacob's cell phone number. About 5 minutes of this had been going on at this point. Note to self here: learn how to dial out of a foreign hotel room prior to staying the night.

I could not get the phone to work...I went to the front desk (which is not the same as the front desk in US hotels) where I knew nobody would be at that hour of night, and tried that phone. Again, no luck....and the German message that shouted out of the phone was of no help either! I grabbed some tourist brouchers (again in German) to see how many numbers people use in telephone numbers here...10....I needed to use 10 numbers-got it!

I go back to the room and figure out which 10 numbers i needed, but Dr. Jacob was not answering...so I email (because I know she has a blackberry)....no response. Now it has been 10 minutes of gasping. Just when I was ready to put him in the car and drive to the klinik to see any nurse on duty, he began to breath better and return to a normal state.

It all happened again around 4:30am, but only for 5 minutes or so. Dr. Jacob had returned my email a few hours later, but I had already turned off the computer. Today (Thursday) we arrived at the klinik early and they were ready for him.. Dr. J wanted to do an ultrasound of his lungs because she feared there may be fluid in his lungs. She was pleased that she did not see any fluid in his lungs. What has happened is this: Tony's liver we knew was already enlarged from all of the necrosis of the tumors PRIOR to us getting here this time. With the Removab treatment he did on Tuesday it has added additional inflammation to his liver and now his spleen (fyi: Tony has 2 spleens, which are taking up abdominal space).

The way she described it is that between the tumor spots in his lungs, enlarged spleen, enlarged liver, and lets not forget all of the gas and other stuff he has sitting in his GI tract, he has a tremendous amount of pressure on his lungs. This pressure is the cause of this shortness of breath. She thinks the necrosis will get bigger in the liver since he did the tx on Tuesday, so if it does, she will aspirate the fluid. She is not sure why the gas and back up is happening----no blockages noted and Tony's "dates" with the bathroom have all been fine.

So that's it..there you have it...add it to the twists and turns on this roller coaster ride we are on!!! That's all to report for now. His blood work is due back here today, so we will know that info later. He will NOT be going to the Frankfurt hospital to see the gentle hands (not really) of Prof. Vogl this trip. For one he is not in Germany right now and Dr. Jacob also feels like it would be too much for this short of a trip. More updates to come.....
Love,
Crystal

Dr. Jacob's magic tricks....

2009-07-21T15:40:00.003-04:00

Today is Tuesday and I am the "fill-in writer" for Tony again tonight. Wow, what a day is a good way to start! I kind of had a feeling that I might just wake up in the middle of the night here and not be able to go back to sleep...and that's exactly what happened to me at 1 am here. No tv, no internet, no food, so what's a girl to do??? The answer-is think. Lots of thoughts go through your head when in a situation like ours. My number one thought last night was "Thank God Tony is sleeping and not showing any signs of pain." I think it was the first night in a month that he did not wake up at least 3-4 times in pain.

I woke Tony up at 7am (1 am back home) to get ready for the long day. We arrived to clinic at 8am and began his 8 hour infusion. It's funny how Dr. Jacob works her magic...you got a problem and she usually has an answer. She had switched some of Tony's pain meds around and took him off the oxycodone (or his MJ drug as he likes to call it). The patch seems to be working much better. She first drew blood before giving him the new antibody drug he got here in May (Removab...spelling???) and then plans on drawing blood again tomorrow to measure how quickly it is working in his system. Then the pre-meds began and it knocked him out within 10 minutes! I would dare to say he slept about 5 hours all together at the clinic--much needed rest I might add.

Tony had an ultasound with Dr. Jacob today (insert Tony's line about not being pregnant here). She does such a great job at showing you everything while she is doing it and explaining exactly what she sees---good or bad. As many of you who read this know, Tony has had several weeks of abdominal and back pain. The ultrasound solidified possibilities of why this has been happenning. She did not think that the pain was caused by the tumors directly. I will TRY to explain: she saw A LOT of necrosis in the tumors in the liver (this shows up as black areas in the liver when the tumor is in a state of dying cells/dead cells). She also saw white patches which are scar tissue in the liver (this can be a result of damage to the liver/tumors from past chemo,etc.) She explained that even if a tumor is in a state of necrosis it will show up very active on a PET scan and a radiologist will measure that as "active tumors". Tony had a HUGE area of necrosis in the middle of his liver that was not that big in May. This actually took her by surprise.

He still has tumors in his liver, but the overall message was that she felt like the treatment he did in May had stunted the progression of the tumors. She did not do the lungs because they do not show up on ultrasound in the same manner. She also saw a lot of ...and forgive my honesty here Tony.... gas and bowel in Tony's GI tract which is also adding in the distention of his abdomen. She cracked herself up and told him "you are full of sh** Tony" as she laughed. But this gas, bowel, and state of inflamation of the liver (due to current tumors and the necrosis process of the other tumors) explains the source of his abdominal and backpain. His kidneys and spleen were fine. Some mild fluid was noted in his liver as well. If some of the necrosis tumors get any larger she will drain (aspirate) the fluid from them...currently they are not large enough to do this.

His bilirubin was elevated (5.9) slightly (under 1.3 is normal) and two of his liver enzeymes were very elevated. Knowing this helps to explain the extreme fatigue and overall feeling awful. Her first instinct was that the reason he needed the ERCP procedure in May (stent put in his bile duct) was because the necrosis tumors and/orl ymph node inflamation was constricting the bile duct in that specific area. Hence, this could be why his eyes are still slightly jaundice and his urine is still not completely back to normal.

She gaves us a ton of meds to take tonight as she expects him to have a fever tonight with chills. She said his reaction may not be as intense since it was done via IV over the course of the day, plus his body has seen it before. None the less she told us to call her in the middle of the night if we needed to and she would come help. She only lives 2 miles from where we are staying.....what a doctor right????

We ended the day with going to this little Italian restaurant (where they now recognize Tony when he walks in) and watchin a movie. It is now 10:15 pm here and he has been asleep for over an hour...no bad side effects yet.

Hopefully, the desired author will be back at it tomorrow. i just wanted to post something because I know so many of you check his blog daily to see how it is going. Thanks to everyone back home. The kids sounded great on the phone-they are having fun at grandma and grandpas today. Give them a hug from us if you see them....until tomorrow.
Love,
Crystal

Here, and all is well

2009-07-20T04:46:00.002-04:00

Today I am writing for Tony, so those of you eager to hear his charm and wit will have to wait another day. I am going to keep this short an sweet. Overall, the flight over was uneventful. Believe it or not we got our rental car in a record top speed of 5 minutes---they even gave us an automatic as we requested! Eric, if you are wondering it was actually a Benz and not the "bus" that you had the joy of riding in.

We are 22 hours in with little to no sleep now, but we just saw Dr. Jacob and she brought a few tears to Tony's eyes...I think he is so relieved to be here and the fatigue adds to the emotional part of all of this. In usual Dr. Jacob style, she got right to work on Tony. She is changing his pain medicine which was not controlling the pain. She looked @ him and said "you have a fever and you have lost weight." I don't know how she does it, but she was right on both. Tomorrow (Tuesday) he will have to have an infusion for 8 hours. They will take his blood before the 8 hour treatment to test it and then immediately after the treatment to measure how quickly the medicine is reacting to his tumor cells.

When I walked in this morning to the clinic (which is now bigger) I was once again taken back by how many people are here-10 "hooked up" individuals, and from what I am hearing from their conversations, most are from the US. It is so crazy why we all have to come here!!! Tony got sad and said "I just wish we didn't have to come here, its so far away from the kids." My response was, "I know, but the best way for your body to get the help and rest it needs is to be away from all of the things back home that don't allow you to do that." Those things meaning, the daily grind of living with two young kids, working, etc.

He will write tomorrow I am sure....it is time for me to try to sleep. Time to adjust our life by 6 hours:) As Tony would end it: More updates to come......
Best wishes,
Crystal

Drum roll please...

2009-07-16T19:41:00.003-04:00

Every morning for the past week or so the first thing I have done is check my e-mail. I'm still not sleeping well so usually I'm up early and figure that when I get the news I'll have time to digest it, good or bad, before I start the day.
Yesterday I woke up to yet another day of no e-mail from Dr. Jacob, so I e-mailed her and told her I was worried that the mail may have gotten lost and maybe I should go get another copy of the scan to bring with me to Germany. Her response...I have it (insert sounds of crickets chirping). My response back to her in so many words was...would you like to let me know how they look? Another good place to insert sounds of crickets chirping because I didn't hear from her the rest of the day.
I did however wake up this morning to an e-mail from her simply saying that everything seems to be stable. I can't say I was disappointed with the news, but still didn't get the details I was looking for. Dr. Jacob is a woman of few words in her e-mails, which I have always known and willing to deal with, so looking forward to being in front of her soon to get a full explanation.
Crystal and I have stayed relatively busy this week with work and the usual events. Lots of odds and ends to take care of before we take off Sunday, but we have all day Saturday to try to wrap things up. Packing is becoming second nature to us so we know what we need to do.
Sounds like I may be doing the Removab via IV versus injections along with a trip to Frankfurt to see Dr. Vogl during this trip. Interested to know why we are going IV, but I am sure there is a reason for it. My main goal is to get "patched" up while at the very least keep the tumors stable. I'm still in some pain, not sleeping well, very tired, etc. So would love to figure those issues out before I return home.
Special thanks in advance to those of you watching and helping out with Ashley and William the next two weeks...Crystal's mom, Donna, my dad and step-mom, Jerry and Karen, Carol and Paul Lauck, Steve and Lisa Moore, Doug and Paula Bova, Nick and Rachel Schotts, Ty and Katrin Gerig, Scott and Laurie Dyer and Terri Park. They are going to be two very busy children which could be a very good thing or a not so good thing (because they will be a little out of their norm), but I tend to think it will be a good thing. They may not want us to come home!
I don't plan on writing again until we get to Germany...let's hope I can stay news free until then. Here's to a successful trip back to the Mother Country...

More updates to come....

Love,

Tony

Mail is slower than I anticipated...

2009-07-10T20:59:00.003-04:00

I know that when I send letters to Germany they get there in a week, because I have experienced that transit time, but as of today Dr Jacob still didn't have my scans in her hand. Now I'm just hoping she gets them before Crystal and I get there! I know the scan results will determine what kind of treatment and where we need to go first so keeping my fingers crossed early next week we will have some sort of schedule.
The week continues to be an up and down ride. Tonight will be the first night I don't take any medication (we'll see)....hoping to get some of the "harder stuff" out of my system. I'm playing doctor on my own here, thinking that maybe this will help my mood, my lethargy, and maybe even some of my pain. This shouldn't surprise anyone, but I have been doing some research on my pain and discovered a very interesting diagnosis that is nearly every symptom I have. I don't want to publicly embarrass myself so won't mention the diagnosis, but I'm going to try a few things and ask Dr. Jacob about it when we get to Germany. Not sure if my diagnosis can be caused by tumors, but typically it isn't and I'm banking it could be caused by the ERCP procedure I did several weeks ago. Ironically the pain never really stopped after that procedure. My diagnosis isn't a great one, but if it isn't cancer I would be extremely happy and know we could probably better control my pain through some medications. We'll see if Dr. Tony comes through.
I know my blogs haven't been the most upbeat so I'm going to end this one tonight in the event I start going down that road again. Simply put, the week's been a tough one mentally and physically and not sure what I would do without Crystal. We've had some great talks this week and I find myself loving her more each day. I don't know how she gets through each day sometimes, but she seems to always find a way and continues to be as supportive as possible. She continues to be my life line in this battle and I know without any doubt I wouldn't be here if she wasn't by my side.

Based on the shortness of this I going to "plug" my next fundraiser again. We are full boar in the planning process, which really isn't that big of a deal this time.

The date again is September 10th, at Mudsocks Bar and Grill in Fishers, IN.

This is a Thursday night (rain or shine), but I really hope that doesn't stop people---I obviously want as many people to come out as possible. No guilt trip from me....but I would love to see everyone :) . The main event is Mike and Joe, who are my college Fraternity brothers. If you have never heard them play, you are in for a treat. The night will be much less "formal" than last years event. We may have some items to raffle off or some other little activities, but as of now you can plan on a normal night out to see a band play, have some drinks and enjoy the company of friends. You can make it as cheap or as expensive of a night as you would like. If you have talked to me about fundraising, you know I am very humbled by it and really appreciate the support, but still get a little uncomfortable about it. I just want people to come out, have a normal night, and have some fun. I know the fundraising takes care if itself. Please mark it on your calendars, invite your friends, neighbors, relatives, etc.

More updates to come...

Love,

Tony

Just writing....

2009-07-06T20:25:00.004-04:00

No new news to report, but I haven't written in awhile so thought I would write a few things tonight.
Our go-go-go weekend turned into a fairly quiet weekend. Many of our plans "fell through" which really turned out okay since I think I needed some rest. I can't explain how tired I feel all the time. I'm not sure if this is good or bad, but I almost require a short nap during the day to make it through the day. Sleeping at night hasn't been a problem, so the needed nap isn't coming from lack of sleep at night.
I tell Crystal I feel like I live the same day over and over again. I wake up feeling fairly good and well rested. About 1:00 I start getting tired and the pain in my abdomen starts to surface. If I get a nap the pain subsides a little, if not it continues until the end of the day. By the time I am ready for bed the pain begins to shoot up into my chest and back. I take some pain medicine and fall asleep until the next day. Who knows what all of this means (i'm not convinced it is tumor related, but I also have no way of knowing this for sure).
Although I sent a copy of my scan to Germany on Friday, my little bull dog called the IU Med center today to see what the radiologist had to say. She knows I'm really anxious about this and although we know we can't take IUs "take" as exactly what is happening I'm sure she thought a little good news would help if that was the case. Long story short the report really didn't tell us much. Some of the sections sounded like there was progression and some of the sections sounded as if things may be better. Inconclusive to both of us and not one that we will get excited or disappointed about. Crystal e-mailed the report to Dr. Jacob and she also seemed to be confused by the report. She said she would share the scan with Dr. Vogl when she receives it, let us know and then we would also have a decision on whether we would go to see Dr. Vogl first or start at the Klinic. I'm hoping we'll know something in the next few days.
I did finally take the time to watch "Farrah's Story" this weekend. I wanted to watch it before I went back to Germany, don't ask me why---but I did. I thought she did a good job, but it wasn't exactly what I expected. I spent some time watching with a smile, other times with tears. Watching her go through those procedures knowing I was on those same tables was fairly hard to watch. Hearing her say "I just want my life back"--was hard to watch.
I've learned so many positive things from cancer and have had so many positive things occur in my life because of this disease, but not always having your life because of your health is by far one of the most difficult parts of this disease. For example, Ashley wanted me to take her to the pool yesterday and I physically couldn't do it. Crystal was on her way to the store and we told her that I needed to rest. I would do anything to feel well enough to have taken her down to the pool and I think she understands, but doesn't make it any easier. Luckily one of our neighbors called a little later and invited her to go to the pool (thanks Prices), but when she came back and we started talking about it again she asked why I had to have the boo-boo in my belly. These are the times I want my life back...
I'm trying really hard to stay positive and peaceful while I wait for the results. I give myself a solid "A" at times and a dreadful "F" at other times. I guess that is to be expected. We'll get through regardless. Thanks to everyone for the recent support. I'll post results when I have them.
More updates to come...

Love,

Tony

Big day tomorrow...

2009-07-01T20:14:00.003-04:00

Since last Thursday we have basically been non stop which is both a good and bad thing. The steroids I’m sure helped with my energy level, but we also had a fantastic weekend with our friends the Petruska’s at their lake house Friday night and Saturday as well as a house full of family on Sunday for the kid’s Baptism. Laughing, doing things I enjoy and being around people I enjoy seem to help keep any pains or thoughts of cancer away, so I know this weekend had a great healing effect steroids or not.
The bad part is I’m a little more tired this week and although the chemo stopped Tuesday so did the steroid. Fortunately I have no real “treatments” for a few weeks until we head back to Germany. I find myself taking short naps when I get home from work at night and my pain is back in my chest and back, but I’m living and getting through each day with as much of a smile on my face as possible. My message to myself this week is if I want to be sick, I’ll be sick---if not, than I can continue to tell myself that I don’t have to be sick or be going through what I am going through. Trust me, it ain’t easy preaching to yourself, but I know there is some truth in how you see yourself.
Big day tomorrow from the standpoint of getting a PET scan. Not planning on seeing or hearing results tomorrow from the doctors here in the States. I’ll send the scan to Dr. Jacob and let her give me the news sometime next week. Always a little anxious about the scans---this one will be no different based on some of the issues I have been having lately, but will try not to “worry” until I know exactly what we are dealing with—maybe nothing, right?
I wanted to wait to book my flight until I knew for sure what my scan said, but we ran out of time. We are under three weeks and even as I tried to book my flight today the price went up $500.00 from the moment I accepted the flight until the time I was asked for my credit card. Luckily, I got the flight at the originally quoted price---I’m trying to forgive the airlines for being such a pain in the rear (although I should be happy no matter what as long as I arrive and return safely which is the ultimate goal).
For now the plan is for Crystal and I to leave the 19th and return on the 31st. Dr. Jacob has already speculated on what she thinks I will be doing, but I’m not sharing until I know for sure. Looks like a visit to Prof Vogl and more than likely an alternative way to receive the Removab along with some more Vidaza shots. Should be a really good time. I really want to feel well enough so Crystal and I can spend some quality time together. In October she was there for the first week when we didn’t have a car and in January when she was there we didn’t have time to enjoy the town or “sight see” due to the weather. Weather should be nice and we'll have a car, so as long as I’m okay we should be able to enjoy ourselves a little.
Like everyone else, we have another busy weekend this weekend. More events with family and friends—trying to get that rest in before we go, go, go. Looking forward to it, I can not believe it is July already.
More updates to come….

Love,

Tony

Farewell Farrah...

2009-06-25T21:03:00.004-04:00

Never saw her, talked to her or wrote her, but for some reason felt some connection to Farrah Fawcett. Mainly because she was going through some of the same treatments as I was and she was the one patient that in a weird way I could identify with. The doctors and nurses rarely talked openly about her, but I knew many times when they would talk about my treatments and side effects other patients would experience, those came from Farrah's experiences.
I commend her for using her celebrity power to do some of the things I would like to do in opening up the eyes of others about other treatment options outside of the United States. Note: her documentary is airing agian tomorrow night at 8:00 EST, I believe on NBC. I know she was a fighter, but also know the toll this disease takes on someone physically and mentally. I'm of course saddened by the news, but like all the people I have known that have moved on because of cancer (or chemo), I know we are all different. For what it is worth, I hope she was at peace when she died and I wish her family and friends strength during this loss.
I'm a little more up beat today. Started some steroids yesterday to help my body combat my inflammation, liver enzymes and energy level. I assume they making me feel better, but I guess the further away we get from the Vidaza shots probably help too. Several more days of chemo and we'll see where we stand. I'll have more blood test results this weekend so hopefully we'll see some improvements. Always good news on the steroids...I'm looking more and more like a body builder, good for the self esteem.
As I mentioned yesterday, looking forward to the weekend. I have some people recently to thank, but I won't single anyone out right now. The support we receive continues to be a blessing....I want to thank our neighbors (I will eventually name each of you) for mowing our lawn each week. May seem like a little thing, but I can't explain in words how much that helps Crystal and I. With me operating on empty lately, Crystal has been working overtime at home. Having some help with the lawn is sooooo much appreciated (especially in this heat). I hope to get out there soon---believe me there is nothing I would rather do than mow the lawn. I also want to thank someone (who will remain anonymous) for really helping me out with a big issue I was having this week. I know you read this and your help is appreciated more than you know.
More updates to come...

Love,

Tony

Up and down...

2009-06-24T21:15:00.003-04:00

Monday was my last Vidaza injection and I must say I tolerated the drug fairly well. No nausea to me is a huge win so I'm thankful for the anti-nausea medication or whatever else helped stopped that reaction. Although I don't have nausea I am completely worn out. I know my body is wondering when it is going to get a break. I started chemo Tuesday and I'm even more worn out than I was before. Good news is being tired is really my main side effect, but I can't tell you how difficult it is to come home and hit the couch while I watch Crystal carry the load with the kids. She continues to amaze me and even though I know she gets frustrated at times, she doesn't always show it.
When I was going through traditional chemo treatment a couple of years ago and would get really sick I would always tell her that this isn't worth it....if I can't "live" then why bother would always be my comment to her. I'm no where near there at this point, but I don't feel like doing much, especially after the days I go to work and being this tired reminds me of those days a couple years ago. Watching William in the yard kicking a soccer ball or hitting a baseball or Ashley wanting to go down to the pool is difficult. Mentally I'm still in the game, but I could use a break from treatment and have a few weeks where maybe I could feel "normal" again---be that normal father and husband again. Something I never take for granted when I'm feeling good.
Chemo will be over next week, I have a scan next Thursday, send it to Germany and find out what we are going to do. I anticipate that we will be back in the mother country July 20th, so not much rest for the weary. Still, I'm keeping my fingers crossed for a few good weeks and hopefully I can get more support in Germany if I'm not feeling great.
As usual I don't want to complain. I'm not in serious pain and I'm living--working every day, doing things on the weekends. Bottom line is I could use a little break. I stopped taking my fifty or so supplements a day during the Vidaza treatment just to feel like I was getting a break from something. I'm slowly getting back on them, but it was nice to not have them hanging over my head for a few days.
Last weekend was a nice Father's Day. We were able to spend some time with my family on Sunday. This weekend we have plans to do nothing at a friend's lake for a couple of days. Hoping for some good weather. I'm not going to get started on religion (at least in this entry), but Sunday Ashley and William get baptised. Probably a surprise to many of you that they aren't already, but let's just say the timing has never been right and their father has had some issues with the church. My disclaimer in case anyone cares is that my spirituality remains at an all time high along with my relationship with God. I believe there is a big difference between religion and spirituality....I will leave it at that for now. Although we have planted many seeds of spirituality with our kids, like I said before, the timing seemed right and it's time for them to start creating their own spiritual journey. Crystal and I are both looking forward to it and we appreciate the Holy Spirit of Geist welcoming us and our children with open arms based on our honesty with them. Also a good chance to be with family that day which is always good for me.
More updates to come...

Love,

Tony

Another round of Vidaza...

2009-06-20T16:23:00.005-04:00

After my good news Monday, I took some time to live a "normal" life for the next couple of days. I still had some discomfort in my belly, but I worked Tuesday- Thursday like a normal person and although I was tired at the end of each day, I slept fairly well at night and felt like I was beginning to build on the good the news.
A second round of Vidaza was on my schedule to begin Thursday. This was one of the new drugs I received as soon as we got the news in Germany that I had some progression. This drug is not the "new" antibody, it is the one that changes the DNA of my cancer cells and has actually been approved by the FDA recently in the U.S. (mainly for MDS). I knew going into this week that I would be taking these injections and even though I knew the side effects it caused in Germany (nausea), I was hopeful that things would be a little different here based on not going through a chemoembolisation treatment. My neighbor agreed to help me inject the Vidaza into my belly for the five consecutive days I'm supposed to take it. The amps I brought home from Germany look like they have a cotton ball inside so after several e-mails to Dr. Jacob I was under the impression that once the amps had contact with oxygen the powder inside would liquefy. Unfortunately, once we punctured the amp nothing happened. Carol was certain that we needed to mix something with the powder and I couldn't disagree with her assessment. She knew of other drugs that had to be reconstituted, but the problem was we had no idea how much or with what. Soon we found ourselves on the Internet typing in words from the German directions we had trying to translate the directions into English. Also, thanks to the Internet we found some English packing directions as well.
Soon we figured out that we needed 4ml of sterile water mixed with the powder. Although I was sure this was the correct procedure, this was one more example of going out on a limb in my treatment. I know Carol wouldn't do anything she wasn't comfortable with, so I felt good about what we were doing based on her comfort level...but as most of you know I'll pretty much do anything at this point. Right or wrong, about a hour after she arrived the Vidaza was in my belly and we were off and running with another procedure.
I had not had time to eat so I ate a chicken salad before I went to bed (by this time it was around 9:30 pm). In Germany, about two hours after my injection I would make a trip to the restroom to empty my stomach and then go about my business the rest of the day. I felt fine when I went to bed, but my stomach woke me up at 11:30...ironically two hours after the injection. The rest of the night I spent getting reacquainted with the toilets in my house. Long night to say the least.
I spent early Friday morning e-mailing Dr. Jacob and my oncologist here, Dr. Helft, for ways to reduce the nausea. She recommended some medication that Dr. Helft also thought would be effective and soon was at CVS (where I am a VIP by the way), paying for and popping pills.
Of course I was disappointed with the nausea, but I knew I only had four more injections so as much as I hoped I wouldn't have repeat nights, I also knew that I can do anything for four days. The most disappointing part was we had plans on Friday night to go out with eight of our close friends and my sister Tonya and her family was coming in Sunday. I really didn't want to be sick for those events, but I was and am determined to go on sick or not. Last night I took my bucket and went out. Fortunately the new medicine seemed to help since the bucket sat idle all night. I also have pretty much gone on a liquid diet, especially after the injections which may have helped as well. I had a great time and was glad I didn't let this get in my way. Wish cancer wasn't such a big part of my life, but at the moment it seems to take center stage most of the time. Last night was a small win in not letting it get in our way. I plan to keep it that way the rest of the weekend and as much as I can moving forward.
The third injection is already complete and so far on Saturday my toilets and I have remained on our normal terms. Two more injections to go and then I start some chemo for a week or so (long story, but haven't determined yet exactly what I am doing). My oncologist here is having some discussions with Dr. Jacob before we make a final decision. Either way, I'll be back on something by next week, neither of which I believe will cause to many side effects based on the dosage, but we'll see.
On a complete side note, many of you may have seen on the website to save the date 9/10/09. We have solidified that date as the night of the next fundraiser. I'll get into more details in the next several days and I'm sure over the next month or so, but get this on your calendar now. It is a Thursday night, but hoping that won't stop to many people. I can assure you the night will be a good one and would love to see as many people as possible. Easy for me to say, but take off work or go in late the next day. Nothing better than a three day weekend right? One of the best healing antidotes for me is to spend time with people I care about...the fundraising efforts to me is secondary and will take care of itself naturally. Again...September 10th, Mudsocks in Noblesville...details to follow.
More updates to come...

Love,

Tony

Finally some good news...

2009-06-15T21:06:00.005-04:00

I needed today more than anything. I've been feeling much better the last couple of days, but needed some reassurance that my intuition was correct. Although I thought they would schedule my ultrasound Tuesday I received a call this morning that they could perform the procedure today. Maybe IU Med is finally catching on that if they don't want to hear from my wife they will get me on the schedule right away. Little did they know that Tuesday would have been okay with me. Still, I didn't want to miss moving the scan up a day so I went.
I spoke with Dr. Jacob this morning and we were able to talk about what has happened over the past few days. She believes everything I have been going through is normal based on what she has given me and the procedures I have gone through here. She didn't believe that I would have a tumor blocking my bile duct (I must admit my oncologist here does not believe it either) and couldn't understand why no one could tell me what it was. We think maybe the blockage is coming from an enlarged lymph node, but really don't know for sure. I told her about my abdominal ultrasound today, that my oncologist thought I may have fluid in my abdomen causing my distension. She scared me a little, saying that if I did have fluid in my abdomen and it tested positive (that it is coming from my tumors) that I needed to get back to Germany immediately. She said that would concern her and even though didn't believe I had fluid thought the procedure would be a good idea just to rule it out. Can I just say I love this women. My intuition lately has been telling me that everything is okay, but with all of the negative news along with feeling terrible I have been doubting myself and worrying quite a bit.
Today I am hoping we turned the corner. The great news is there was no fluid in my abdomen. The good news is my blood tests came back very positive. Bilirubin counts are much better and liver enzyme counts are lower. The only "worry" I have right now is getting my liver inflammation down. Dr. Jacob assures me this is normal, but I would like to look like I'm four months pregnant versus five or six months pregnant. I'm not going to insert another ultrasound joke here....
I hope this is the start of a good trend. I'm still a little uncomfortable from the inflammation, taking pain medication as needed, but not overdosing. I'm gaining some energy and feel like I'm getting my swagger back. I want to win this more than anything...I've been through rough patches before, but this one seemed to be really rough and longer than normal. I'm keeping my fingers crossed that the road ahead has recently been paved and we can get back in the right direction. Whatever this week brings, we had a really good start.
More updates to come...

Love,

Tony

Scratch ERCP off the list...

2009-06-14T21:47:00.004-04:00

It is official. I can add ERCP to my list of medical procedures. Not sure I want to be that thirty seven year old that would go up against any other thirty seven year old in “medical procedures performed", but I guess in my competitive nature that is one positive I can see coming out of this. I think there is a name for people that like to have medical procedures (hypochondriac maybe)...those poor people need help.
Anyway…the semi-conscious anesthesia during the procedure was more like “lights out.” I was actually a little nervous because I do pretty well with anesthesia and tend to not only wake up easily, but remember events fairly well. Whatever man or woman can remember their ERCP I would like to meet them. The procedure is performed while you are lying on your stomach, so the last thing I remember is telling them how uncomfortable I was…noting that I was there because I was having some abdominal pain. “You’ll be comfortable soon” are the last words I heard. The anesthesia was so semi-conscious like that I could barely wake up after the procedure and during the ride home. Maybe they did that to me on purpose for the smart alec remark before I went to sleep.
The procedure went as planned. I had two strictures (narrowing of bile ducts) one in the central bile duct leading to the liver and one in the right lobe of my liver. The main bile duct is like a tree trunk with two branches and basically my trunk and right branch had a stricture. The doctors were able to put in one longer stent to open up both strictures and send me on my way.
Good news, bad news results from the procedure. Good news is they were able to open up my bile ducts and hopefully within a week I will start getting my normal color back and keep my bilirubin levels back to normal. Bad news they couldn't tell me exactly what was causing the blockage (although a tumor is a fairly logical explanation) and I get to go back in three months to repeat the procedure so the stent doesn’t get clogged. A date that I am sure will be circled on my calendar. They also told me that my inflammation probably was not caused by this blockage so that more than likely won’t be solved by this procedure.
Friday I woke up from a great nights sleep from the semi-conscious anesthesia. Even though I felt lousy I knew it was an IV day so I went to my naturopath as usual to load up on some supportive natural medicines. I’m sure they did my body some good, but I didn’t leave feeling any better. I was whipped from the procedure and was having a considerable amount of pain. After sleeping two hours Saturday night Crystal talked me into calling my oncologist for some pain medicine as well as e-mailing Dr. Jacob for some advice. I’m thankful for such a supportive oncologist here even though I’m no longer in his direct care. I’m certain there are many doctors out there that would have respectfully asked for me to look for another oncologist, but Dr. Helft has stuck with me and I know still would do anything to help me. We called him at home on Saturday morning and by 11:30 Crystal was at his house picking up a prescription for oxycodone to ease my pain and allow me to sleep. We also heard from Dr. Jacob who advised me to take another pain medication that I had from a previous trip from Germany. Although I filled the prescription, I took the medicine Dr. Jacob told me to take and the pain was eliminated. I slept great last night and woke up Sunday feeling much better.
We had plans to go to my brother-in-laws parents lake house (the Bovas) today and thankfully I felt well enough to go. Getting out of the house, sitting in the sun, and enjoying the company of family was much needed for my mental status today. I think it has been obvious that the last several weeks have been pretty rough so getting some relief from the pain and keeping my mind off cancer today as much as possible was very healing.
I have a conference call tomorrow with Dr. Jacob because she wants to change some things based on the news I have been sending her. Looks like some added chemo to go along with the five day injections I have coming up of the medication that I took when I got to Germany (not the one that gave me the rash). We also want to talk about what has occurred since I came home along with the continued inflammation I have been having. My oncologist wants me to come in on Tuesday for another ultrasound and blood work to see if there is fluid in my abdomen that needs to be drained. Of course I want to get her advice on that too.
Not having pain today and last night has been a relief. I need a little break both physically and mentally to get back on track. Crystal and I appreciate all of the help we have received this week with meals, lawn mows, watching the kids, messages, etc. I sometimes don’t know how Crystal does it…I have said it before, but I believe this battle can be harder on her than on me. Should be another adventerous week.
More updates to come…

Love,

Tony

Two updates in one day...

2009-06-10T20:01:00.004-04:00

My visit to the hospital today went pretty much as planned. The ultrasound was harmless, but did show I had a blockage in one of my bile ducts in my liver. We couldn't tell from the ultrasound exactly what was blocking the duct, but it's fairly obvious for anyone following along that it is not something I ate. Not sure if we will be able to tell if the blockage is a tumor that shifted or has gotten bigger, although the information would help my sanity a little.
The ultrasound tech was very helpful and gave us more information than I thought she would. We are used to Dr. Jacob giving us a full narrative during the ultrasound so we asked lots of questions and pointed to things we could identify from experience. The joke never gets old, so I'll tell you that the ultrasound didn't show us that we were having twins. I'll send the ultrasound to Dr. Jacob to see if she has any thoughts because even though I felt like I could identify many things, I am still no expert.
After the ultrasound the tech told us to go home because the IR doctor needed to read the results and then decide if I needed an ERCP procedure. The tech obviously did not realize that I brought my little bull dog, Crystal, with me and that would not work for us. She said the IR doctor wouldn't be back for a few hours and there wasn't much she could do. Crystal asked to speak with another IR doctor (a friend of ours) that is not in the GI area and she complied. Darel came to our room and the ball immediately began to move. He spoke with my oncologist as well as the head of the ERCP unit and although we still were not able to schedule the procedure today, we got it on the schedule tomorrow even though they were booked. I want to thank Darel for his help today...our other back-up plan was calling Dr. Malluccio (my surgeon), but we didn't have to use that option. I need to publicly thank Crystal as well. She continues to amaze me with her assertiveness. I would like to think I have gotten fairly assertive over the years, but I am no where near the level of Crystal. I feel sorry for the techs tomorrow if we start getting to far off schedule.
So tomorrow afternoon they are going to put a tube down my throat and somehow find the blockage and put a stint in the duct to allow bile to flow freely. Apparently I'll be under conscious sedation, which should be enjoyable. You won't remember it (wink, wink) is the explanation I'll get before the procedure. I've been awake before when they have put a tube down my throat and I'm fairly sure I'll remember it, but oh well, I've been through worse.
I can't say that I'm not a little worried about the blockage, but I'm doing my best to stay positive. I do know that the procedure will make me feel better so I am sure that will help my mental status. Besides being a little uncomfortable and tired I'm doing okay. Crystal is doing the best she can, but I know this is hard on her too. We have taken turns picking each other up over the past few days. One day at a time....

More updates to come...

Love,

Tony

Back to my favorite place...

2009-06-10T08:30:00.002-04:00

Yesterday while I was at my naturopath I asked if she could take a urine and blood tests based on how I was feeling and (TMI I know) the color of my urine. I also seemed to be turning a nice shade of yellow, so I figured something is not right.
We won't have complete results until later today, but we do know the bilirubin in my urine is off the charts, which more than likely is caused by some sort of bile duct blockage either from a tumor that has shifted or gotten bigger. Real pick me up news, I know...I've been pretty pumped up since I heard myself. I e-mailed Dr. Jacob yesterday and she told me to get an ultrasound as soon as possible to see what is going on.
So Crystal and I are making the trek to the IU Med Center later this morning to have the ultrasound and whatever procedure needs to be done after that. I am assuming there is some sort of blockage and we'll have to put in a stint to open up the duct that is blocked. I think if we take care of this I'll start really feeling better, so I'm not going to complain to much. Crystal is keeping me grounded in regards to the cancer. All of this doesn't necessarily mean things have gotten worse, it could just be a shift in a tumor. She does a really good job when she sees that look in my eye to not let me get ahead of myself or worry about something we're not certain of yet.
I'm sure there will be more news as this unfolds. Looking forward to another fun day!

More updates to come....

Love,

Tony

A better end to a painful week...

2009-06-07T08:17:00.007-04:00

I've kept quiet this week mainly because I haven't had very positive news to update. I would imagine looking back at the last several weeks in the journal would be a fairly depressing read. I've dealt with numerous curve balls in the last four years, but this one has taken me awhile to digest. I hope I'm finally coming out of it and ready to move on with more determination than ever. The end of the week has been much better than the beginning and middle so I hope I can continue the trend.
Worst part of the week had been the pain which in turn, has caused the inability to sleep. I keep telling people that I've really pissed off my tumors which is causing quite a bit of turmoil in my organs. I continue to battle inflammation which I'm sure is causing the pain in my chest, but the pain also seems to move around my abdomen and liver as well. I want to think that this is all a good thing, the antibody must be doing something, but honestly can't say that as fact. Still, I'm going to stick with it as I think I know my body pretty well right now...I'm certain something is going on inside so I'll remain positive that this is all working as planned.
I've e-mailed Dr. Jacob almost every day this week. I have to keep my e-mails to her succinct. She always answers, but the responses are always short. I've been trying to fill her in as much as I can on how I feel, but mainly asking for her advice on how to control the pain and inability to sleep this week. I started a natural sleeping pill earlier in the week, but gave up on it once the pain was keeping me awake. I spent a portion of every night on the couch this week, but I can report that the last two nights have been much better and we may have found a combination that has helped ease the pain.
I'm still really tired, but at least the pain is tolerable and I (knock on wood) have been able to sleep the past couple of nights. I'm not always the most patient person when it comes to getting through the "rough" days but I keep reminding myself that I've only been home two weeks. I'm still working and going to the kids events. I'm cooking as much as I can in order to "eat right" and getting my regular IVs. Crystal and the kids are hanging in there as much as possible as many of the other moments this week with their husband and father have been on the couch.
There have been many reminders to me this week that having faith continues to be a good lesson for me. Every time I get worried or have concerns all I need to do is have the patience that everything will work out for the best. I remind myself to slow down, release the concerns and somehow, someway, what needs to happen will happen. Maybe it is luck or prayers or determination or something else, but whatever it is, over the past four and a half years I know if I remain patient everything always works out the way it is supposed to. I am certain this chapter in my journey will not be any different. So far some of the concerns I've already had are working themselves out.
I'm trying to fill our calendar for the summer in order to enjoy the company of as many of our wonderful family and friends as we can. Today is one of those days where we have nothing going on except for another tee ball game. Crystal and I will try to catch up around the house today and get ready for hopefully, the start of a good week and more of a "normal" life.

More updates to come...

Love,

Tony

A long week back...

2009-05-31T20:18:00.006-04:00

As much as I enjoy being home, I would be lying if I said this was an easy week. I've told numerous people this week being in Germany gives me such a sense of security....it's a place where I feel safe with what I have to face physically every day. Unfortunately it's not home, so as safe as I feel there physically obviously there is a big void when I am there in other aspects.

You name the emotion this week and I pretty much went through it. I'm slowly getting off all of the "unnatural" meds, which probably have been helping some physically, but are difficult on me emotionally. Pain meds and steroids aren't my idea of fun and not sure how anyone can actually take any of those drugs voluntarily. Dr. Jacob thought it would take at least a week before I started feeling better, so I hope she is right and I start to turn this thing around. I haven't been bed ridden, but I've been really tired and have been in some pain due to all the inflammation in my chest. To put things in perspective though, I must admit that I was very ambitious yesterday and tried to play nine holes of golf. The round was not pretty and I can't say I was "finishing" holes, but it did feel good to get a little exercise. I went from barely being able to hold the club on the first couple of holes to at least swinging freely by the end. The company was great and although I probably shouldn't have tried to play I needed some reassurance from myself that I was strong enough to swing some golf clubs. So...I guess I can't ask anyone to feel sorry for me for "not feeling good", but on the golf course, right?

Between work and spending time with the family, I spent most of my week trying to get organized with my medication and diet as well as work on the financial piece of the last couple of trips to Germany. Obtaining all the medications that I did not bring back from Germany is not difficult, but we changed my plan enough that I had some research to do along with several follow-up e-mails to Dr. Jacob to make sure I understood exactly what needed to be done. I'll have some more work to do the next couple of weeks as we add a few more things each week.

I look back at the last three months and even though there could be nothing that I did that caused progression, I took this week to look at the things that I could eliminate that "could" have caused some issues. My diet is always something that I know could cause issues, although you really never know. I'll hang my hat on a pretty solid diet over the last several years, but I would agree that I was a little more lax than usual over the last three months. I don't want to make myself crazy over diet, but this week was one where I started to plan again and try to eliminate and / or add foods that make sense. I won't be perfect, but I want to be better. Sounds easy, but trying to eat healthy is nearly a full time job....so again, I'm not going to be crazy, but will be spending more time trying to eat the right foods when I can.

I don't think my body has decided what time zone to be in yet either which hasn't helped. I broke out the little green pills tonight to try to get some sleep....let's hope I don't doze of mid sentence. When you add everything up this week I think being restless is probably a little natural. I plan to start off the week with a good nights sleep and try to build on that.

My intent is not sound to down, but an update is and update and overall it's been a difficult week. I don't think I expected this week to be easy and unfortunately it wasn't. I've always been one to snap out of a funk pretty quickly and I know this won't be any different. We continue to have so much support from friends and family which is much appreciated. I turned thirty-seven this past week, so thank you all for the birthday wishes. I've made the same birthday wish the past four years...I know dreams can come true.

More updates to come....

Love,

Tony

I'm home...

2009-05-25T21:57:00.002-04:00

Going to keep this quick, but wanted to let everyone know that I made it home safely without any issues. The flight was long as expected, but I felt fairly good and my rash remained calm. I'm not sure if my body has just gotten used to the antibody or whether I'm on so much medication that the signs are just being masked well.
There is no better feeling seeing your wife and kids after a physically and emotionally draining three weeks. We lit up the airport baggage claim area with hugs and tears, there is nothing better than having the three of them in my arms. I was tired, but very hungry from the flight (since they decide not to feed you much on the ride home), so we grabbed a bite to eat, came home and all went to bed.
I decided to stay away from my little green friend last night thinking that my own bed would be enough to warrant a good nights sleep, but may have revisited that decision if I had to do it all over again. Being overtired and a little off from the flight made for a restless night and I soon found myself up around 5:30am this morning ready for lunch. I started having some chest pain again last night and this morning which didn't help me sleep either, but had some little white friends that made things better by the afternoon.
Crystal, the kids and I spent a relaxing day today with Crystal's family. Was nice to have an extra day today before the madness begins. I have a massive "to-do" list that I will start to tackle tomorrow. As of now this week is looking a little daunting, with getting medication, IVs, work, family, rest, etc...but I know things will work out as they always do. I intend to stay as stress free (if that is possible) as I can during this eight week period...I don't want any obstacles for this medication.
Simply put tonight...it's good to be home.

More updates to come....

Love,

Tony

One final day...

2009-05-23T03:40:00.005-04:00

Elvis woke up this morning after two good nights sleep thanks to my little green pill. Sleeping through the night the past two nights has been some of the best therapy I have had since I have been here. There is nothing worse than being so tired you can not sleep while not feeling good. I can tell my mood and energy level has been much better.

My rash had subsided a little yesterday, but I'm not sure how it could not have based on everything we are doing for it. I'm getting about six hours of IVS a day, I have three different ointments I'm constantly rubbing on it and keep my belly iced down while I'm in the Klinic. We really wanted some clear spots to poke for my injections yesterday. There weren't many, but even though she wanted to inject everything on my right side again above my liver, she opted to do half on one side above my liver and half on my left side.

Par for the course would have been a good day yesterday, not feeling good today and a full blown outbreak tomorrow. So far we are one for two. I had a nice day yesterday on my own. I woke up late thanks to my little green friend and spent most of my morning and mid afternoon in the Klinic. There is a lady here also getting IVs that comes and goes most of the day. She always says she can count on my being here no matter what time she comes to the room. After my IVs I treated myself to a yogurt cone and sat by the lake to read the paper. We had another beautiful day yesterday and looks like we are off to a good start today. I went home to pack after the lake because I didn't know how much energy I would have today and rested for another hour or so before heading to eat.

There is a new restaurant here that Eric, Doug and I went to that serves hamburgers and pizzas that is kind of a fun atmosphere so I decided to go there. I was early (6:30), most people don't start eating around here until 8:00 or after so I had a nice dinner listening to the band they had for that night warm up. Dr. Jacob started me on steroids again, mainly for this rash and to aid my trip home. Because I won't be getting IVs she wants to give me something to help keep me comfortable for tomorrows ride. As usual they make me a little emotional, so I tend to tear up for no reason at all....yesterday at dinner they started playing the Stones "Honkey Tonk Woman" and it brought tears to my eyes. I really didn't know I liked that song so much....but maybe I do. Thank God they didn't play any Elvis, I may have been crying like a baby.

I woke up today after another good nights sleep thanks again to my little green friend. On day two I usually am feeling the effects of the shot, mostly just really tired. So far, no complaints. I feel pretty good with plenty of energy. The IVs always help so I hope that things won't go down hill later. I have decided to eat at the Klinic tonight just in case things take a turn for the worse so I don't have to find a place to eat. We'll have to see what tomorrow brings, but I'm keeping my fingers crossed I have energy. I can deal with the rash as long as I have some energy to get around.

I'm a little disappointed today because Dr. Jacob is not here and I didn't know she was going to be gone. She had my plan ready, but I had a long list of questions for her that I was wanting answers on. I started going through them with the "interim" doctor and we ended up getting Dr. Jacob on the phone, so I got everything answered. My therapy list continues to grow since we have added some new things and only took out one or two elements of what I usually do at home. She wants me to have a PET scan in eight weeks and see where we stand. More than likely I'll be back here in early August. She wants Dr. Vogl to inject this new antibody directly into my liver. Unless someone beats me to the punch I'd be the first in the world....let's just say it will be okay if someone does beat me to the punch, but I'll be willing to be the first if I have to.

The next couple of months will be quite the waiting game. Of course I'm saddened by what we have found out this trip, but at the same time I'm eerily at peace with it. I'm sure I'll have my moments in the next couple of months, but I think I'll be feeling okay and I have to give this a chance. Dr. Jacob came to me yesterday with a medical journal on colon cancer and said there was nothing new in Germany for colon cancer treatment. She went through some of the "new" stuff (all of which I have had (mainly chemos)). So we joked about how "cutting edge" our countries have become. She said there was a Chinese drug that has been used in China that she would consider putting me on depending on how I respond to this new antibody. I'm hoping we don't have to go that route, but at least there is another possible option.

These last three weeks have been very eventful, not at all what I was expecting when I left. One thing about cancer is you never really know, which is one of the most difficult things to cope with. If you feel terrible your disease could be better and if you feel great your disease can be getting worse. I always try to go into scans without expectations, but I can tell you that's an impossible feat and one I'm not convinced I'll ever master.

Once again, I want to thank all of the people who have been thinking of me, praying for me, and sending me and Crystal, Ashley and William well wishes. This is just as difficult for them as me and the support Crystal receives and the hugs the kids get mean so much to me. I've written this numerous times, but I know with 100% degree of certainty that without all of the support I would not be here right now. Family and friends can not control what is occurring in my body, but they can help feed my mental and emotional well being which I know helps me with my personal battle. I've been through so much physically, but my physical struggles pale in comparison to what I face mentally everyday. I thank you all from the bottom of my heart. See you in the friendly confines of Indiana soon!

More updates to come....

Love,

Tony

"I'm all shook up"

2009-05-21T15:22:00.004-04:00

I woke up this morning around 5:00am as usual (I still find it weird that most people in Indy are just going to bed). My sleeping habits this trip have not been good, I think mainly because of the medication, but for some reason can’t seem to get comfortable in the beds here. Germans apparently don’t believe in sheets, but they have these giant comforters they use, but then you get hot. I sleep with doors and windows open and have been using a curtain as a sheet, but I’m still hot at night—which doesn’t help. Because I have all of the doors and windows open the birds tend to wake me up around 5:00am too. I'm so lucky to be a morning person :) !
Typically the second day after my injection is a better one where I have more energy but the rash begins to show it’s teeth. Unfortunately the rash did show it’s teeth during the night, but my energy level was horrible. As much as I want to get home, I was thankful today was not the day. My rash had spread across my entire chest, under my arms, on my back, on my hands, feet and around my mouth. It is hot to the touch and feels and looks like a sunburn. I opted not to cook my eggs on my chest though this morning, took a rather painful shower and waited until about 7:45 to head to the Klinic. I knew I needed to get some treatment.
As soon as I walked in, my good friend and nurse Ailene was there to greet me. My nose started to bleed as I showed her my rash and basically told her I feel like I just got the tar beat out of me. As usual, the staff was on it. She called Dr. Jacob immediately who was on her way in and started me on my IVs. I was a little down today too, so she added in a much needed hug today too. Dr. Jacob was soon there and of course we sat down and mapped out what we needed to do. I'm like a broken record I know, but I can’t tell you how amazed I am with this woman. As we talk I sit and listen in amazement of this women's knowledge. I know she is good, but there is no one better at taking a snapshot of the current situation and finding ways to immediately solve them. I always tell her that its okay if I need to suffer, but she doesn’t want me to and does everything she can to make sure I’m comfortable.
The conclusion was that this injection really over stimulated my immune system. This is not a bad thing based on what we are hoping the antibody does, but she thinks the symptoms may get worse before they get better, especially after we take the last shot tomorrow. She tossed around splitting the injection into two cycles since we are increasing the dosage again, but decided not to. I was concerned about getting on a plane Sunday if these symptoms are what I will be dealing with so we talked about how we would combat those symptoms so I could get home. Six hours later I left the Klinic feeling much and the rash looking better as well. What makes me feel so secure with Dr. Jacob is I get instant validation from her after what she does. I always seem to feel better and today was no exception, so I'm beyond believing in what she says. If you know me, you know she is getting rapid fire questioning from me, but in the end I have no doubt that what she says is what I need to do.
She gave me some vitamin E pills to break open and put on my rash tonight, along with some aloe and antihistamine pills. Her concern about my lack of sleep has gotten to the level of giving me sleeping pills. I feel like Elvis (is that bad that I associate sleeping pills with Elvis?). If those don’t work tonight I’m screwed. Next option will be to grow some burns, play the guitar and shoot my sleeping pills with whisky. “Your body needs to rest Tony”, she says. “It has never seen anything like we are giving it and your immune system has not been this active for a long time.”
So like a good patient I spent the afternoon at home resting (without sleeping) and plan to go out and get a bite to eat and go over to the Klinic to work for a few more hours today. It’s Father’s Day here in Germany so I guess I should wish all those Father’s out there a Happy Father’s day from Germany. Should would be a joy to be with my kids today. Three more days…
After all the bitching and complaining I am doing okay. This has not been an easy ride, but I am in great hands and with very caring people surrounding me on a daily basis. Nothing would be better than being home, but I don’t want to be there if I need to be here giving my body what it needs. I know these last few days won’t take long at all.

More updates to come…

Love,

Tony

Short and sweet...

2009-05-20T06:51:00.002-04:00

Going to keep it short today mainly because I'm fairly worn out and not much to update. My injection yesterday left me with a similar reaction last night and today as I had on the second go round. The worst part of the night was just not being able to sleep. Dr. Jacob believes my medication may play a part in that, so we may try some things on Friday night when we do the last injection. I also had six and a half hours of IVs yesterday, some of which made me sleep, so I am sure that didn't help either. I really miss my own bed too which adds to the lack of sleep...four more nights!!
Overall though, I'm surviving. I pretty much feel like I've been hit by a truck today so I'll hunker down on the couch and try to get some rest. The weather is nice today, so maybe I'll muster up enough energy for a short walk or sit in the sun for awhile. I've been working quite a bit over here and getting lots of treatment so the days go really fast. Dr. Jacob has told me several times, but today she told me again how tough she thinks I am. She can't believe how well I'm doing based on everything she is throwing at me. I thank my body for being so strong even though I don't always feel that way. My white blood cells finally started going in the right direction today which is positive and we are going to do a ultrasound on Friday to see if there are any differences from last week. That's all for today, looking forward to tomorrow when I know I'll start feeling better.

More updates to come....

Love,

Tony

Three down....one to go.

2009-05-19T04:26:00.005-04:00

Getting some energy back just in time for the third shot today. Although I'm not having major reactions, it's evident that the shots dramatically slow me down for a day or two. I don't sleep very well at night mainly because of the pain the rash causes and my high body temperature, but it's not like I'm a ball of energy during the day so I think I'm getting enough rest. The rash has begun to subside today, but today we are scheduled for another shot. I can't say I'm excited about another shot, especially since I'm getting my energy back, but I know after today we are down to the last one.

I'm not staying at the Klinic tonight. Dr. Jacob does not believe I will have a major reaction...more like the second round than the first. I have her cell phone and I'm minutes from the Klinic if I need help. I also have quite a bit of medication with me so I know I can survive if a reaction occurs. My shot today is double the quantity that I received on Saturday. Her plan is to go under my skin today right over my liver. Dr. Jacob believes I may have a little more pain in my liver, but also believes we may get more of an effect in the liver as well. We're trying to avoid my lower right abdomen where my original rash was as well, even though it is nearly gone. We've been concentrating the past couple of days on my inflammation, red and white blood counts. My IVS have increased considerably, so I spend a little more time in the Klinic in the morning, but they seem to make me feel better.

Kept busy yesterday doing laundry and working all day. The laundry machine alone here runs for almost a hour and a half, so my two loads of laundry took most of the day. I smell good again though which is a bonus not only for me but for those around me. I selfishly was hoping it would rain yesterday because I knew I had to get laundry done, so wasn't disappointed when it did. The other patients here I'm sure weren't as happy, but the rain was a small victory for my personal productivity.

Paul and Kim flew home this morning so I am officially on my own. They were great to have around, especially after Doug and Eric left. They kept me moving and social at night. I know we'll stay in touch at home and I wish them nothing but the best...I was fortunate to gain their friendship this go round.

Five more nights to go which isn't so bad. I have dinner plans Wednesday night with one of the staff members and will probably plan another one later in the week. There are some new faces here, all very nice, but no one I have connected to yet. I still have plenty to do and hopefully will be resting as much as possible anyway for at least a day or two.

Not much more to report as of now.

More updates to come....

Love,

Tony

Still kicking...

2009-05-17T05:06:00.004-04:00

Actually the worst part of yesterday was being concerned that I didn't "suffer" enough Friday night and into Saturday. Based on my conversation with Dr. Friedriekson, I was hoping for a similar reaction to my second dose of the antibody, but the night came and went without drama. Dr. Jacob was not here on Saturday and even though I had a small fever during the night and developed a rash on the left side of my abdomen, I wasn't satisfied with my reaction. The interim doctor told me not to worry, that a second severe reaction was not necessary and I should be happy that I didn't have the side effects.
Because I slept at the Klinic Friday night I started my IVs early the next morning, headed home for a shower and went out to lunch with Kim, Paul and another women, Susan, who is here from Texas with her friend. We had a nice lunch, but by around 2:00 I was ready to go home, which we did so I could rest. I spent most of the afternoon reading and napping. Although I didn't have a major reaction I was and am still very tired. I peeled myself off the couch for dinner last night with Paul, Kim, and Susan and headed home for bed.
This morning Dr. Jacob was here so I had the opportunity to go through the last several days with her. I have many symptoms ranging from night sweats to canker sores that I wanted to run past her based on the treatments. As usual, I won't get into any details, but talking to her about everything makes everything so much better. Based on our conversation we have added some new IVs and new medications. She made it clear that my first two reactions were good and didn't feel like I should have to have the side effects, especially after the first shot. She doesn't think round three or four will be much different. Each symptom we discussed she had an answer for and could detail what was occurring in my body. Everything makes much more sense when speaking to her and certainly gives me a sense of calm. She expects me to be really tired and achy, which I am...but mostly she is pleased with the direction we are going right now. I wanted to make sure she was hitting me with full force and she looked at me and said "Tony you body couldn't handle much more." I told her that was fine, but if I needed to suffer several more days while we did some things not to hold back. She pats me on my knee and says we're doing fine.
I'm ready to get home....tomorrow will be two weeks, but I know the days will go by fast. I need to be here to get the support my body needs. Every morning I receive several e-mails from different people which bring tears to my eyes---those little notes help more than any of you know. I know I am not alone over here...I'm a very lucky man and blessed to have so much support and love from so many people. I'm counting down each day to when I can get Crystal and my kids physically in my arms...won't be long.
More updates to come...

Love,

Tony

The calm before the storm...

2009-05-15T15:38:00.007-04:00

Nine thirty here on a crisp night in Germany. I'm sitting in the Klinic waiting for round two of the antibody to show it's teeth. We expect it will be here somewhere around midnight-2 am, so I'm making the most of my time while I can. It's like I'm waiting for some storm....very peaceful at the moment, but you can see the storm on the radar and know it will be here soon. The goal is to survive the storm tonight (obviously) and get to that sun shining morning tomorrow probably feeling a little beat down, but at the same time will have a sense of relief that round two will be over. Bring it on!

I spoke with Dr. Friedriekson yesterday and he is pleased with the reaction that I had, noting that no reaction would be very bad (meaning the cancer is not responding). He likes the rash, the fevers, the aches, pains, etc. He was able to answer all of my questions about my blood test results and what I can expect the next week. He liked the idea that I was staying in the Klinic for round two, but also doesn't think it will be much different or worse. Not having Dr. Jacob here has been difficult so I found some comfort in talking to a doctor that was very entrenched with my issues. We have other doctors here who are good, but just don't know me or my case like Dr. Jacob and Dr. Friedriekson.

I've done everything in my power today to stay awake even when they gave me my premeds which typically knock me out so I would be nice and tired tonight and maybe sleep. Could back-fire, but seemed logical at the time. My tumor marker results came back and even though these never have been a good indicator for me, we were pleased with the results based on our initial findings when I arrived. They have increased, but not nearly to the levels where we all thought they might go. I want to discuss with Dr. Jacob (she returns Sunday), but that was a positive piece of news today.

I drove Doug to the airport today. He was looking forward to getting home, but I also think he was concerned about leaving me. Doug and I have been friends since grade school and he's a very special part of my life. He has been with me through my best and my worst and has never strayed from my side. We can sit and talk for hours or we can sit comfortably in silence when we are together. This wasn't the setting I think either of us would have envisioned for us twenty or thirty years ago, but we made due with the situation. His willingness to be out here with me says volumes of the type of man and friend he is...I want to thank him publicly for being here with me. His company here meant more to me than he will ever know.

(Momma) Kim (I hope I don't offend her with that) and Paul, from Indiana, are still here and I know I can lean on them while they are still around. Kim is full of energy is has offered to run errands for me, cook for me, get me food, etc. I said it before, but just having someone else here to socialize with to keep you out of a funk is the most important thing. Paul and Kim are a joy to be around so I'm sure I'll spend more time than they might want with me in the next few days. I hoping the weather clears up in the next few days (it's been somewhat rainy / cloudy) so we can do some local cafes, etc. I have plenty to do with work and have reading to do so I'm not searching for things to do at the moment.

On a side note, for those of you needing some entertainment tonight, Farrah Fawcett's documentary is airing tonight in the States. I know this Klinic will be on the documentary since she has spent so much time here...I am keeping my fingers crossed that the documentary is done well and paints a positive picture of the alternatives out there for cancer patients.

Thanks, as always, for all the support from the States. I'm concerned, but positive as ever. Wish me luck tonight!

More updates to come....

Love,

Tony

Round One...

2009-05-14T05:18:00.007-04:00

Let's hope the reaction I had to the new medication correlates to how well it is effecting the cancer. I was given the injection Tuesday after my premeds with a needle they probably also use to spear small sea fish. The shot is give under my skin near my stomach, on Tuesday we chose my right side for no really good reason. The injection site now looks like I got hit with a softball. Thankfully it is not inflamed, but it is red and starting to itch. We will switch sides when I go for round two tomorrow.
On Tuesday after my shot I felt fine. Doug and I went home ate lunch and relaxed. That evening we went out to a very nice dinner with Paul and Kim, a couple here from Indiana. Paul is getting some treatment here for some conditions not related to cancer. It's been great having them around. We had a great crowd here in October to talk to and I find the time and healing process goes much better when you have some support and friendships here as well with people you can better connect too.
After dinner, Doug and I went to the clinic to make our nightly phone calls followed by our nightly movie back at the apartment. When I went to bed around midnight I was starting to feel tired, but still wasn't feeling any reactions from the shot. Then came 4:00am.
I woke up at four and pretty much felt like I had been hit by a truck. There wasn't to many parts of my body that actually felt good. I was soaking wet from a fever, I could tell I was dehydrated from my muscle aches and thirst, and my chest and legs really hurt. I forced myself out of bed to use the restroom and drink about a gallon of water and tried to go back to sleep. I soon found that was not going to happen. I had some medicine that they gave me in case I started having some reactions, but I took some before I went to bed so didn't really want to double up on it, plus I knew if I could hold out for a few more hours I could get some help at the clinic.
I did doze in and out for a couple of hours until about 6:00, but knew I needed to get to the clinic. I wasn't getting better and I knew I needed some help. I forced a little breakfast down, woke up Doug, and we drove to the clinic. As usual, this place was wonderful. By the time we arrived at 6:30 there was still no one on staff from Dr. Jacob's crew. I stopped a nurse in the hallway and as soon as I gave her my name she dropped everything she was doing and immediately took me to the nurses station and began working on me. Gabby was her name and I couldn't have been more thankful for her that morning. She got me into a bed, started working on my temperature, and made all the necessary phone calls to Dr. Jacob's crew. I'm not sure if it was the treatment or the security of her being around, but even though I still didn't feel good, I did start feeling like I was stabilizing.
By 7:30am some of Dr. Jacob's crew began to arrive and by 8:00am I was making my way back down to the infusion room. I took on plenty of fluids yesterday and was able to get the rest I needed later in the afternoon. By 5:00pm yesterday I started feeling more like myself and declared that the worst was over from round one of four scheduled rounds. Doug and I had a late dinner last night and spent some time back at the clinic making some phone calls since I didn't feel good during the day. Unfortunately sleeping during the day keep us up late last night so getting to sleep last night was difficult.
Today I feeling much better. Besides the rash I have developed from the injection site I feel fairly "normal". I have another day off from the antibody today and we will do round two tomorrow on the other side of my stomach. I'm hoping for two matching shiners by weeks end on either side of my belly. Maybe I'll draw a smile under my belly button and I'll have cheery smiley face with two rosy red cheeks on my lower abdomen looking back at me when I need a smile.
Doug is leaving tomorrow morning, so I have decided to stay at the clinic on the days I am getting my injection. I am the first person here they have given this too, so when I asked if it gets worse as we increase the dosage, there is no way to know. I'll feel better knowing I can get immediate assistance if I need to in the middle of the night. If the reaction is the same I'll be happy....may sound strange, but I would rather feel terrible for twelve hours than not good for ten days. I had the impression before I started that I might feel bad for ten days which I wasn't looking forward to. I don't think any of us know, so I'll take a day at a time. I am surrounded by a great team of nurses and doctors so I'm in good hands here medically. Dr. Jacob has been gone for a couple of days in the States, but returns this weekend and will make my comfort level increase even more. Paul and Kim will be here until Tuesday and I will lean on them as well if I need anything. My plan now is to fly home Sunday, much more of an extended stay than anticipated, but I have no other choice. I have been very relaxed the past three months about my disesase and it's time to get back to doing everything possible to beat this. This trip has been an unwelcomed slap in the face, but one I may have needed to really get the ball rolling in the right direction again.
I know there are a select few very worried about me at home (I won't mention your names), but know that I am doing okay. One week here feels like two or three days. I'm sure I'll have some rough days ahead, but I've been through some tough times before. They smile at me here when I say I'm tough....they know and say I am and I do think that helps when I tell them I that I'm not feeling good. They know I'm not kidding and jump to my needs when I tell them things aren't going well. Paul and Kim will be here until Tuesday so I will have some quality social interaction in Doug's absence and not really feel like I am here "alone." I appreciate all of the continued support and prayers for me and for Crystal and the kids back home.
More updates to come....

Love,

Tony

One week in...

2009-05-12T04:07:00.007-04:00

I took the day off yesterday from the blog partially because I didn't have much to report and partially because I was a tad frustrated with my status. I had another really rough day on Sunday with nausea and pretty much just wanted to lay in bed all day. I was able to eat a small lunch which unfortunately didn't stay with me very long, but felt a little better by dinner and was able to keep everything down. Dr. Jacob has been very adamant about me eating and I can hear Crystal's voice in my ear too telling me I have to eat, so I've been sucking it up and eating although my appetite has not joined me yet in Germany. Dr. Jacob told me yesterday she was going to start giving me something to boost my appetite so we'll see what happens.
I didn't get any shots yesterday which has been the best treatment for my symptoms. There is no doubt the new injections were making me sick because I started feeling much better yesterday and am nearly myself again today. I have four weeks until I start the five day cycle of vidaza (the new medication) again. I'll know what to expect and will be at home so maybe it won't be so bad next go round.

On one hand no shots yesterday was good, but on the other hand that also meant it was one more day without the new antibody. Without the details I didn't receive the new antibody which was very disappointed, mainly because each day I lose means one more day here in Germany. I'm at the Klinik now and will start the shots today but Dr. Jacob wants me to stay for the entire ten day cycle plus a day an extra day day or two for observation. I only get four injections in ten days, but the dosage increases as does the risk of side effects. Dr. Jacob is fairly certain I will feel like I have the flu for awhile. As much as I don't want to extend my stay I know being here is the right thing to do. I'm sure if I went home early and had some complications that I would wish I was here. So instead of coming home this Saturday it looks like I'll be here for another week. Not ideal, but not the end of the world. Not seeing Crystal and the kids makes the extended stay the most difficult part, but it's a small sacrifice to pay for the long term potential gain. I've started my premeds this morning (feel like I've had about ten German beers right now) and the first injection will be in my system in several hours. This is the start of a very big day...we'll see how it goes.

Not much other news for now. I told Doug this morning that being here is like the movie Groundhogs Day. Seems like every day is exactly the same. Wake up, treatment, lunch / rest, dinner, movie, and bed. Not big on the excitement meter, but I'm getting the rest I need.

More update to come...

Love,

Tony

Happy Mother's Day!

2009-05-10T04:11:00.002-04:00

First of all I must quickly wish all the mother's out there reading this a very happy Mother's Day. Hopefully each of you have something enjoyable planned whether you are able to spend time with your children or not. Of course a specific happy mother's day wish goes out to Crystal, my grandmother Feller, my mother-in-law, Donna, and my step-mother, Karen, today. I lost my mother to cancer while I was in college but she remains one of the most influential people in my life. I wish she would have had the same opportunities I have had in her battle with cancer. I know she is wishing me well and holding my hand through my journey though--she would be proud of how far we have come and what we are doing now.

We sent Eric off today, back to Charleston to be with his family. Eric has been a close friend of mine since college and is just a super guy. His humor and compassion on this trip was much needed and I'm not sure I could have made it through this week without him. We don't get to see each other that often so it was really nice to spend some quality time with him even though the circumstances were not what either of us would have liked. Eric is the type of guy that would go to war with me without hesitation and I thank him for being such a good friend over the years. Not to many people are willing or able to sacrifice time away from their families and work to travel to another country with their friends (knowing we aren't going to be doing much). I appreciate the sacrifices he and his family made this past week for me and my family....it truly means more to me than words can express.

The weather continues to be great here so I was hoping yesterday we could get out and actually do some things on Eric's last day, but unfortunately I had one of my worst days I've had here yesterday. After my IVs I tried really hard to join them at a cafe for lunch by the lake, but after about 45 minutes I needed to get home. I felt really sick and pretty much spent the rest of the day in bed. Thankfully Doug is here too, so the two of them were able to get back outside and enjoy the weather and each other's company. I had enough energy to go out to dinner with them last night, but pretty much went to bed when we got back home.

I'm disappointed that we were not able to be more active while Eric was here, but I know he and Doug understand...I'm hoping things turn around soon for me. They are going to give me some nausea medication today to see if that will help, but it is evident I'm better today even without the medication. My last shot of the new medication is today and then I start the second new antibody tomorrow. Dr. Jacob returns tomorrow so I'll get her take on my symptoms as well tomorrow. Could be a variety of things....as long as we are going in the right direction I'll take some down days.

That's all my news for now...more updates to come.

Love,

Tony

Continuing the daily routine...

2009-05-09T06:29:00.000-04:00

We made it through another day in Germany…not much news overall. I haven’t really been feeling all that well which has been tough. Feel like I have the flu and not really motivated to do things. Doug and Eric have been troupers, going with the flow even though we have not been doing much.

I had a chance to take them to the Brewhaus yesterday where they ate some authentic German food and beer in an authentic German atmosphere. I think they enjoyed it, but not sure they could repeat their sausage intake today. They now have a better understanding of how the German’s eat, which is quite different than what they are used to. We’ll see what they decide to do today…

My new medication did not come in yesterday so it looks like it may be Monday before I begin. Not the news I was looking for since each day I don’t get the medicine appears to extend my trip an extra day. Dr. Jacob took the day off today so I’ll discuss more details with her when she returns, I assume tomorrow.

Thankfully the weather continues to be bright and sunny which helps the mood. Besides being physically tired, I think this week has been tough on me mentally as well. I’m excited about my new treatment and by no means giving up on this, but seems like it has taken me a few more days to absorb my new news. I’ll be back to normal soon I know….

I receive a newsletter each week from Dr. Moss who writes information concerning cancer treatments, new and old, around the country and thought I would share the one I received before I left for Germany. Crystal and I have always told each other that my goal is to keep my disease stable and hope that something will become available to help push me into remission or a cure. Although there has been a few new drugs, it’s frustrating for me after 4 ½ years and all the funding for cancer research there seems to be little progress. This article echoes some of my sentiments about the war on cancer and the tragedy we face as Americans with the big pharmas, government, and health insurance companies. This article also reminds me of not only how serious my disease is, but also how lucky / successful I have been surviving what I have for such a long time. Everyone following along with me on this journey has played a vital role in helping me through this…I truly believe it’s not just the drugs that have gotten me where I am today. That’s something the big pharmas can’t possible patent!

“Her front-page article on April 24, 2009 marked a turning point, veteran science writer Gina Kolataas described for Times readers a litany of failures in the war on cancer over the past few decades. The overall death rate for cancer, she revealed, when adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. "In contrast," she wrote, "the death rate for heart disease dropped 64 percent in that time, and for flu and pneumonia, it fell 58 percent."

"Still," she wrote, "the perception, fed by the medical profession and its marketers, and by popular sentiment, is that cancer can almost always be prevented. If that fails, it can usually be treated, even beaten." I too wrote about this gap between perception and reality in my first book, The Cancer Industry, which came out in 1980. At that time, I was frustrated by the uninformed attitudes towards the war on cancer that I found at America's "newspaper of record." I am certainly encouraged that, 30 years later, they are finally waking up to the fact that things are not going well in the war on cancer.

Kolata focuses on the treatment of metastatic cancers. "With breast cancer, for example, only 20 percent with metastatic disease - cancer that has spread outside the breast, like to bones, brain, lungs or liver - live five years or more, barely changed since the war on cancer began" (Kolata 2009).

The situations with colon, lung and prostate cancer are no better, said Kolata: "With colorectal cancer, only 10 percent with metastatic disease survive five years. That number, too, has hardly changed over the past four decades. The number has long been about 30 percent for metastatic prostate cancer, and in the single digits for lung cancer." These are the grim facts, despite $105 billion spent by NCI on the war on cancer since its inception in December 1971.

Where Does the President Stand?

As is well known, President Barack Obama lost his mother, Ann Soetoro, and his grandmother, Madelyn Dunham, to cancer. He is as well informed about the ravages of this disease as any president in modern times. He has spoken repeatedly about his desire to see cancer cured soon. He has also vowed that, as part of the economic stimulus package, he will increase federal funding for cancer research by a third for the next two years.

I also believe in generously funding cancer research. However, if the decades-long "war on cancer" has taught us anything it is that providing billions of dollars for research is not in itself a sufficient stimulus to real progress. What is far more important is the quality of the treatments being pursued. So far, the National Cancer Institute (NCI) has focused its formidable resources on developing synthetic and patented pharmaceutical agents that can then be sold at astronomical prices. I am thinking here of the so-called 'targeted' drugs, such as bevacizumab (Avastin), which costs about $100,000 per year per patient.

Obama should examine the manner in which promising drugs are selected for development. As a rule, NCI works hand-in-glove with giant pharmaceutical companies (or their surrogates) to research and develop new products. This cozy relationship with big business has left behind some of the most promising treatments that do not fit the mold. These are primarily treatments of natural origin that are not patentable or otherwise profitable to Wall Street. It is a case of "patents over patients" (as I wrote in my New York Times op-ed piece two years ago). This over-emphasis on satisfying the needs of the stock market has fostered a greedy mentality in the cancer field as well. Sometimes, the purpose of performing research has become to generate profits, not to cure cancer in the most expeditious manner possible.

Unless the Obama administration grasps that there is a fundamental problem beyond the lack of research funding it is unlikely to accomplish anything significant in the cancer field. The administration is still in its early days. But I wonder if he is hearing this message from his medical advisors, such Ezekiel Emanuel, MD, brother of his chief of staff, who is a breast cancer oncologist and medical ethicist at NCI.

If I had some time alone with President Obama I would tell him that there are promising treatments for cancer awaiting development, but that have been neglected because they are deemed insufficiently profitable to big companies. The President has stirred the entire world with his promises of change. When it comes to cancer, however, the White House needs to support and promote treatments based solely on their merits, without regard to the profits of Wall Street or the medical profession. That indeed will be change I can believe in.

--Ralph W. Moss, PhD”

More updates to come….

Love,

Tony

The plan...

2009-05-08T07:17:00.002-04:00

Today is Friday and I’m beginning to snap out of the shock from the news. Dr. Jacob continues to tell me that she has to be honest with me, our plan must change, and she feels good about the new treatments. I understand all of this and trust in what she tells me.

The new plan consists of two different substances, one drug and one antibody. One of the most promising attributes of these two medicines is that my body (cancer) has not seen anything like these two. We think the progression I have had is because my tumors have become so resistant to so many drugs due to all the treatment I have had over four + years. Cancer cells are pretty smart and although it seems like you can beat them down for awhile, they figure out what you are doing and make the necessary changes to keep themselves alive and active.

The drug I have already started is a drug that attacks directly against the DNA of the cancer cells not only reducing the size of the cells but helps slow down the progression of new growth. I will be taking this in conjunction with a tri-functional antibody that will be fighting against my cancer cells in three different ways. The technical explanation on how these things work is more than I can offer on this blog, but this is the antibody that Dr. Jacob is really excited about. If you remember, this is the one she wanted me to use when I returned if it became available or if I needed it. As of two weeks ago, it was approved in Germany so it is ready and obviously there is a need to try something new based on my results. Timing could not have been more perfect on this antibody so I take that as a good sign. The US may have this available in ten to twenty years…if we’re lucky. Because my cancer has never seen anything like these two, Dr. Jacob believes my response will be very good.

I started the drug fighting against the DNA Wednesday and will start the tri-functional antibody either today or tomorrow, whenever it arrives from the pharmacy. The DNA drug is five day cycle of daily injections and the tri-functional antibody is five injections taken over ten days. Unfortunately I will have to extend my stay here a few more days so I can get through the entire ten day cycle before I leave. Although the side effects of both of these medicines are minimal, Dr. Jacob believes I will be really tired with flu like symptoms (fever, loss of appetite, chills, etc.). She doesn’t want to send me home until I get through the full cycle and she knows I am okay.

I’m feeling better today than yesterday, but definitely still feeling the effects of the treatment with Dr. Vogl and the new drug. I am really tired feel really run down. I’m sure part of that comes from the time change and the procedure as well as the mental exhaustion I initially had to deal with the first couple of days.

I had my ultrasound today and it didn’t look as bad as Dr. Jacob expected which is good news. We could definitely see some active tumors in my liver, but there continues to be quite a bit of scar tissue and tumor recession as well. Obviously that was a positive outcome. My blood counts and liver enzyme counts are not particularly bad based on the chemoembolisation treatment I went through a few days ago which is also very positive. I continue to thank my body for how well it is doing in light of the attack it is going through. All in all things seem to be looking up again and we’re once again moving forward.

Eric, Doug and I stayed late at the clinic yesterday, had a nice dinner, went home and went to bed. Doug was tired from his trip, I was just tired and Eric needed to catch up on some sleep too. The weather has been nice, so we’re hoping to get out today and sit in the sun and enjoy each other’s company.

Thanks as always, for the well wishes and support and to those of you supporting Crystal at home. This continues to be quite a roller coaster ride.

More updates to come…

Love,

Tony

A long couple of days...

2009-05-07T07:49:00.000-04:00

Three very long days have past but settling back into the routine here in Germany. My trip over here was long and included many comedies of errors, but that provided some good laughs for Eric and me. No need to bore anyone with details, we made it here safely without major problems.

Upon arrival we drove three hours up to Frankfurt to have my procedure with Dr. Vogl. The hospital was unusually crowded (finding out later they had an emergency that pushed everything back that day). I felt like I was in a US hospital again, waiting for two hours before we saw a doctor. Not a big deal, but we were exhausted from the trip which made waiting all that harder. By the time my procedure was over I had been awake nearly twenty four hours. Don’t think I need to explain how well we both slept Tuesday night.

Dr. Vogl is not a man of many words and kept to his reputation on Tuesday. Usually I get to talk to him during the procedure, but he was very non-committal to my questioning while I was on the table. I didn’t get a good impression from him as his line of questioning was all about my quality of life and pain symptoms over the last three months. By the time my procedure was over I was feeling pretty good about my status from what he was telling me, but when Eric and I met him after the procedure it was clear that things had gotten worse. He once again, didn’t give me much information, actually telling me to talk to Dr. Jacob the next day for the details. I can write what he said since he only said a few sentences. Your liver had gotten worse, lungs are ok. We have growth in the liver which we gave a good dose of poison to tonight which should help. After I picked my jaw up from the ground I asked him if this seemed strange based on the results I had back in January. He didn’t really answer the question, telling me it was a miracle that I had lived this long based on the disease I was dealing with. I know he didn’t mean it the way it came out, but I was pretty much in a state of shock as we walked out of his office. I knew Dr. Jacob would give me details on Wednesday so I decided not to get worked up before talking to her. Eric and I went back to the hotel, ate dinner and went to bed.

Unfortunately Dr. Jacob confirmed Dr. Vogls assessment on Wednesday.. She spent quite a bit of time with Eric and I discussing the results. Bottom line there is not only new growth in my liver but progressive growth with the established tumors. There is no logical explanation other than my cancer has figured out what we are doing. This is not something she expected based on our results in January, my weight gain, and my physical appearance. She thought I looked better now than I did in January which does not add up to what is going on internally. I know the news was not easy for her to tell me nor was it easy for me to hear, but she told me repeatedly that she would not hide anything from me and needed to tell me exactly what was going on.

After we got through the specifics of my status, she immediately turned to our next plan. She already had a plan in place after talking to Dr. Vogl two times, reviewing my scan and my past chemosensitivity results. As of today we changed medications and will be doing some new treatments to combat what we are seeing. I’ll get into specifics in the next couple of days, there may be some more pieces to the puzzle after we meet with Dr. Friedrieckson tomorrow. As disappointed and sad it was for me to hear these things, I know in all my heart this is where I need to be. As tears ran down my face Dr. Jacob looked at me and told me I needed to stop before I caused her to cry too. She said “Tony, this is not it, I still believe I can help you.” This is why I am here…she cares so much about her patients, her knowledge is unmatched (her ability to come up with such a significant change in plan in a short period of time), and her ability to react so quickly to try to stop the direction we are going is unbelievable. There is no wasting time—thirty minutes after I left her office I was being injected with new drugs and starting down a new path to try to overmatch my cancer.

It has been a long two days, but I’m not giving up hope nor am I losing my determination to win this. I told Crystal on the phone today that we have heard bad news before and survived, this will be no different. There will be some sadness and disappointment that will linger for some time, but we will get through this. For those of you at home around Crystal, make sure you give her a hug for me…you can tell her it’s from me. I’m in great hands with Eric and Doug arrives tomorrow, so I’m doing fine.

There will be plenty more updates to come. I wish I had different news, but it’s not going to change, so time to deal with it and move on to the next chapter. Keep up the prayers…a few extra here and there may not hurt.

Sending my love,

Tony

Off again...

2009-05-03T21:30:00.003-04:00

Tomorrow starts the next chapter in my journey with cancer. The bags are packed and all the details are wrapped up, nothing left except for the long flight over to Germany.
To be honest, today was not the best day. Not physically feeling my best coupled with the anxiety of the trip made the day a tough one. I think more than anything I realized once again today that I continue to be in a battle with a very serious disease. There aren't to many moments I "forget" about my cancer, but I stay so busy in life that it is easy to forget what I'm dealing with on a daily basis. Making another trip to Germany brings everything to realization.
Tomorrow I'll wake up and be ready for battle, hope for the best and try to enjoy the trip as much as possible. I'll be making regular updates while I am over there so stay tuned. My procedure and my scan is Tuesday so will know right away how we doing.
More updates to come....

Love,

Tony

Well timed messages...

2009-04-26T22:03:00.004-04:00

I want to start tonight with a quick thanks to the people who had me on their mind end of the week last week. I know there are many people that are "rooting" for me and think about me frequently, but Friday seemed to be a heavy e-mail day. Timing was really good, so I thank those of you that picked that day.
We received news indirectly that one of our friends from Germany is not doing well and was advised while at the clinic to go home and be with his family. My heart aches for Paol and his family because I know what kind of man he is and the fight he had to beat this disease. I saw how well he was doing just six short months ago and I pray that he and his family are at peace right now. As always, any challenging news takes a toll on me even when it doesn't ultimately effect my health because it brings out all the what-ifs again. I know I shouldn't do that, but having that worry about your own disease coupled with the news of someone you feel connected to struggling with their battle made for a tough day. So again, good timing for those e-mails Friday...they really helped keep a smile on my face.
I have nine little pills to swallow tomorrow to end my last round of chemo before I head back to Germany. As always, I'm a little anxious about the trip...more of the unknown than anything. The ride I'm on has been a roller coaster. I've learned that you never know what kind of news you will receive so not to expect anything. That's tough and will continue to be that way, but not sure I have any other choice. I'm looking forward to having Eric and Doug with me and hoping that I'll continue to receive positive news that will make the trip even more enjoyable.
I've had better weeks physically, but I carry on. Had Will's first tee ball game this Saturday, which is one big lesson in patience, and a wedding on Saturday. Finally able to do basically nothing on Sunday which was nice for a change.
This will be a busy week getting things wrapped up at home and at work before the trip. Although I will be working as much as I can in Germany and Crystal will be home holding down the fort, I always feel like when I leave I'll be disconnected from everyone from awhile. I'll try to get back to my more regular updates while I am over there. I fly out Monday, land Tuesday and have my procedure Tuesday afternoon. We'll be busy (and tired) the first couple of days!
More updates to come...

Love,

Tony

Back to reality...

2009-04-20T21:08:00.003-04:00

Back from vacation and back into the jaws of a busy everyday life. The vacation was much needed, but as I told several people when I returned, I could have used a vacation from our vacation. Joking of course... I have no complaints about spending the extra time with Crystal and the kids and I can't say I really missed working (although I did work a little), but we kept very busy during our vacation so we didn't really return well rested.
We sandwiched Disney between a couple beach days. Disney was overcrowded, we hear to the tune of 70,000 people, but don't know if that is true or not. They even stopped allowing people to enter the park one day due to the amount of people. Nothing better than standing in line for hours waiting on a sixty second ride or to get an autograph from a person dressed up as Pooh, but we still had a good time. We weren't in a hurry and had nothing else to do, so it really didn't matter. Besides Ashley complaining about to many people running into her, the kids were great. We were able to spend a day with Crystal's brother, Steve, and his family one day as well since they were on their break too.
I started slowing down after a few days, but physically I felt pretty good overall. I typically experience some pain on my off chemo off weeks, but didn't really have any issues. Maybe it was the Florida sun or the exercise or the absence of stress. Bottom line...physically and mentally it was good to get away.
We returned to what we left...our busy world. Both Crystal and I have been going non-stop since the moment we came home. To put it in perspective, Crystal even has a stack of clothes that haven't been unpacked yet. If you know Crystal, that tells you all you need to know about how busy she is. Crystal and Ashley went to Pittsburgh this weekend for a dance competition so there was no catching up for her last weekend. I haven't slowed down either. I did get a round of golf in Saturday with my dad, but worked all day Sunday while Will stayed with grandma and grandpa.
I'm one week into my last chemo cycle before my return to Germany. I think this chemo is catching up with me a little, but as I told Crystal the other night, I'm getting used to it. I still have the pain in my chest and some of the other physical issues, but I'm learning to cope with it everyday. I still believe the pain is caused from the medication so that makes it easier for me to deal with it mentally.
Two weeks from today I will be on a plane back to Germany. I'm sure I'll get a better idea when I am there as to what is going on internally.
That's my update for now...just wanted everyone to know that we are doing well and back from a good vacation. As always, I appreciate everyone's well wishes and support. There aren't many days that go by where we don't receive a call, note, e-mail, letter, etc. from someone expressing their support for us. I continue to be grateful for our wonderful support system.
More updates to come...

Love,

Tony

On vacation...

2009-04-06T20:07:00.006-04:00

I'm in the midst of a much needed vacation. Thanks to the Eneix family for "donating" / letting us borrow their condo this week in Daytona. The condo is fabulous and so far we have been able to get some rest and enjoy ourselves, but most importantly get away from the every day routine of life. We haven't been on a true "family" vacation for over two years...something that has been tough to do lately with our schedules. Crystal and I promised ourselves we wouldn't go another year without one, so here we are.
My sister Tonya and her family were in Orlando this weekend so we had a chance to visit with them Saturday and Sunday which was really nice. We rarely get to see them unless it is a holiday, so it was nice to relax and visit for a day without all the distractions a holiday can bring. Today we had some rain in the afternoon, so we went to lunch and a movie and then came home to some sunshine, sat out at the pool and cooked dinner out on our deck. So far we have been very relaxed, but things ought to get a little busier the next couple days as we try the Disney thing. Can't say I'm overly excited about going to see Mickey, but William is and Ashley is too (eventhough she reminds me that she is to old for the characters and the princesses). I know William is excited to see the characters, but hoping for my sake he wants to see some princesses too. I'll make sure I tell him it's important to get their autographs as well.
Tomorrow starts my second week off of chemo and so far have been feeling fairly good. I was a little tired today, but not having any pain which is the most important thing. Although the vacation is good for me, having so much "down time" helps remind me of my cancer. It's not a poor me type thing, just easier to think about what I'm going through when I'm not so busy. Unfortunately cancer doesn't take a vacation...I'd be happy to oblige if it would ask. A very, very long extended vacation would be great.
Not sure if anyone has been reading the news, but Farrah Fawcett was in the Indy Star today and Ted Kennedy has been in the news recently too about their battles with cancer. Farrah had some complications with a surgery she had in Germany, so I was happy to find that the article didn't bash what she was doing in Germany. I think the article was more informative on her status than anything. Of course they didn't name a specific clinic or doctor, only that she is working on a documentary that will be airing soon about her treatment over in Germany. I'm really interested in seeing the documentary...hoping it may open some more doors to what is going on overseas. I don't know for sure that Ted Kennedy is going to the same clinic, but I hear he is. What I found so interesting about his article was how the German treatment was portrayed. Maybe I'm a little sensitive to it, but the article seemed so grim...Ted Kennedy in his last stitch effort is going to pursue some radical treatment in Germany. I try to find some humor in this rather than getting angry, but seems to me that my initial treatment in the States was much more radical than what I'm doing now. Bottom line is I'm happy some high profile people are pursuing other options. The media will do there job and report (maybe not in a positive light), but at least that will open up more eyes to the opportunities that are available for those that want to listen.
I'm on vacation so I'm not going to get on my soap box tonight...that will come again soon enough I'm sure. More updates to come...

Love,

Tony

Short update and two good friends...

2009-03-29T20:27:00.003-04:00

What a difference a week makes. This week I feel like a finally turned the corner and started getting out of my "mood". With everything going on in my life right now I think I just needed a week or two to be upset. I consider myself a really positive person, but I guess every now and then I need to be grumpy too. I feel good again, physically and emotionally, ready to tackle another week.

My last day of chemo is tomorrow which will end my second two week cycle since coming home from Germany. As much as I hate to write this, seems like I feel better on the weeks I'm on chemo than the weeks I'm not on chemo. I'm not sure if the medication plays havoc with my hormones or not, but I'll be more attentive to how I feel these next couple of weeks while not on chemo. Seems logical to feel better when I'm not on chemo, but maybe I've got it all wrong.

I've always been good at listening to what my body tells me and learning how I feel from the things I do. The pain in my chest hasn't completely gone away but I think I may have found that some medication I'm taking is causing some of that pain. I won't go into details, but I'm hoping based on my detective work and really paying attention to the pain, when I get it, the intensity, etc that I have found the culprit. We'll see as the weeks pass, but I still have a difficult time believing that my tumors would be doing this to me. Regardless, we'll find out in a month either way.

As I've mentioned recently, my return trip to Germany is first week in May. Crystal and I have decided that she needs to stay home this go round. She is extremely busy at the school and eventhough we get lots of help, we understand it's difficult on the people taking care of our kids and the kids themselves. I'm not planning on any surprises this trip so I think this is probably a good one to "sit out" for her. She was having a difficult time with this decision until my two latest room mates stepped up.

Two of my very good friends, Eric Graham and Doug Haller, are going to join me this trip. Eric is going to take the first leg, while Doug plans on taking the second week. Their trips will overlap a couple of days so the three of us will be together for a short time, which will be nice since we all three live in different states. We don't get to see each other very often, so why not Germany right? I want to thank Eric and Doug (and their wives, Nicole and Sonja) for not hesitating one moment when I posed the question. Both men are very busy with their jobs and families so I know getting away wasn't as easy as they made it sound. These guys are special and I know that no matter what happens over there I'll be in good hands. I also need to mention that my airline ticket to Germany was donated this week by a friend of mine. I continue to be amazed and blessed with great friends and family who are willing to be part of this journey with me.

Quick update on work since I've been vocal about my work load...finally feeling like I'm making some progress. I'm still extremely busy, but not to the point of being totally consumed by my job. I took a couple of nights off last week and worked a little less this weekend. If we weren't going on vacation next week I probably would have worked less, but I'm still trying to wrap up loose ends before the end of this week so I can feel good about where things stand while I'm gone. I definitely don't have that overwhelming feeling like I did just a few weeks ago.

That's my short update for the week. I'll continue to keep people posted.

More updates to come...

Love,

Tony

Getting out of my funk...

2009-03-22T20:41:00.006-04:00

I'm not sure what it is, but this past week was one of my more difficult weeks in awhile. We've all been there, those times where you just don't want to do anything, don't really care about anything, not very fun to be around, etc. I didn't even fill out a meaningful NCAA bracket if that tells you anything. I guess they call that depression, but I hate to use that word. Whatever I decide to call it, I had it this past week.

I think there is a variety of reasons that have caused my so called depression this week. Probably the biggest contributor has been this pain in my chest. Last week when I wrote the pain had been lingering for several days and it never subsided throughout the week. The longer I have it, the more concerned I become. I can't say I'm not concerned right now, but I'm really trying to stay positive and not letting my worry or fear manifest something that doesn't exist right now. The pain won't go away so I broke down and sent Dr. Jacob an e-mail late in the week asking her what she thought. Unfortunately her reply didn't really help, since she told me to take some heartburn medicine and if that didn't help it could be my tumors. Not exactly the response I was hoping for, but I guess that's one reason I like her--she's going to tell you things you may not always want to hear. I think hearing that response from her in person would have been better since I'm sure we could have talked more about it, so I tried to keep that in perspective when I read her reply. She also said that we'll find out regardless when I return in May. My take away is there isn't anything we are going to change in the next five weeks, so let's keep fighting through this and see where we are in May. Each day this week I have accepted the pain a little more and continue to tell myself that it doesn't have to be the tumors. For now, this is another good, but not very enjoyable, lesson for me.

Believe it or not the weather this week didn't really help my "depression." Saint Patrick's Day was a perfect day...one of those days when you leave work you just want to sit outside with friends and enjoy some cocktails. I left work a little early to make sure I was home for Ashley when she got off the bus. Instead of taking advantage of the beautiful day, I decided to feel sorry for myself for the things I couldn't do because of my cancer. Crystal was out with friends enjoying the day, which she should, but of course I was a little jealous. I was home with the kids not feeling good, tired, and worrying about my chest pain. Soon I was eating dinner with the kids and while I had my hands in my face Ashley asked me what was wrong. I told her I was tired and didn't really feel like going out that night (Crystal was coming home with some of our friends and we were planning to go see Mike and Joe (my Fraternity brothers who play in a band) later that evening). Ashley simply said, "well stay home. Dad you always tell me to do the right thing, so why don't you just do the right thing." Ashley didn't know it, but those words from her was exactly what I needed to hear at the time. I got a little tear in my eye and I said "Ashley, you're right I am going to do the right thing."

So I went out. I needed to try to have some fun and seeing Mike and Joe again was really good for me. They are as good now as they were fifteen years ago and hearing them brought back great memories. Fifteen years ago I would been front and center dancing like an idiot about fifteen beers in with several more to go (and I wonder how I got cancer?). No beer or dancing this go around, but it really felt good to be there. There were a couple of the Fraternity brothers there and I had a chance to talk too Mike as well which was nice. These guys remain so supportive of me after all these years which continues to amaze me. I'm glad "I did the right thing" that night...went out and had some fun, but still got home early enough to not ruin my next day at work.

Speaking of work, that is probably the last piece of the puzzle in my "depression." I continue to work too many hours and decided last week based on my chest pain that maybe my body is really trying to tell me something. In response to my body, I took a couple nights off last week and the other nights I shut down at 10:30 rather than 11:30. Each week I feel like I'm getting a little closer to seeing some light, but the work load remains taxing. I've decided I'll do what I can, but I will not allow myself to stress over work or let it effect my health. That's the depressing part for me because not getting it done is not my personality, but apparently another lesson I haven't learned yet. I'm starting to get some assistance at work and I each day I do get closer to getting out of my hole. Two more weeks and I'm taking a much needed vacation with Crystal and the kids on their spring break. Not sure I can describe how much I'm looking forward to that week.

I guess that's what has put me in this "funk"...I'm sure some of my medications effect me emotionally as well. Little things have happened every day last week that I see as little signs in getting me back on track though. Notably I had a nice conversation with a friend at my naturopaths on Friday. She continued to remind me about many of the successes we have had and the power of our minds. My meditation this morning brought me the verse "I am entitled to miracles", which seemed like good timing as well. I've always been good at bouncing back and I don't intend to stop that trait now.

As always, we'll see how this week goes. I feel like I'm turning the corner and getting out of my funk, hopefully that will be true this week.

More updates to come...

Love,

Tony

Two quick weeks...

2009-03-15T20:57:00.004-04:00

I'm getting really bad at sending regular updates so I apologize for those following along that wonder how I am doing. I know there are many people out there thinking about me, which I appreciate and this journal has always been one way to show my appreciation by trying to keep everyone informed.
I have slowed down a little, but no where near where I would like to be. Don't get me wrong, I like being busy and I'm really happy that I am able to physically tolerate being busy, but I still need some balance like everyone else. A day here and there is fine, but I don't want to look back on any day and wish I could have spent my time differently. Cancer definitely has given me perspective over the past few years, and I know what seems important some days is really insignificant in the big scheme of things. I'm doing my best to try not to get sucked back into those days where the daily grind is my main focus. Seems like I've been saying this quite a bit, but we'll see what happens this week.
Overall I can't complain to much about my health the last two weeks. I've been off chemo for two weeks and have felt okay. As soon as I went off the chemo up until middle of last week I felt really bloated and my belly was a little distended. Didn't really cause any pain or loss of appetite, more of a nuisance and uncomfortable at times. I did send an e-mail to Dr. Jacob and she felt like the chemo could be causing that problem. I also asked her about my injections too and we have decided to reduce one of my injections to every other week since they seem to knock me out 36 hours after I take them. She thinks that will help alleviate that problem.
I've also been having some chest pain, which I have not talked to Dr. Jacob about. I can't imagine that it would be due to the cancer, but I'm in a battle with a mental disease so not worrying about it is easier said than done. I don't have any shortness of breath or difficulty breathing, it's almost like a cross between heartburn and a pulled muscle. Again, nothing I can't tolerate, but to be honest it's been a tough one for me to cope with the past few days. Just one more example of how easy this disease can be when everything is going well and you are feeling great. Staying "up" when you are not feeling your best can be a real challenge. Maybe the pain is from the chemo or maybe I really did pull a muscle...who knows, but it has made me a tad grumpy the past few days. I'm trying really hard to remain positive and I still know there are to many things going right to have something go wrong. Still, times like these just really wish for the days when I don't have to think about having cancer.
I did get blood tests back last week and everything is still good. One of my liver enzyme levels went up a little, but that actually didn't surprise me much based on the chemo I took. Still nothing like it used to be in the past, so no real surprises. I start chemo again this week for another two week cycle. Once again, not exactly excited that my two week lay off is over, but I seem to tolerate this chemo fairly well so I'll take the pills with a smile.
The last two weeks I have been able to spend some time with family and friends. William was really sick two weeks ago with the flu so we didn't get out much last weekend as a family, but were able to be home together. Crystal had a girls night out with some friends and chaperoned a sleep over with Ashley's dance team last weekend, while I went to see some of my high school friends. Crystal and I took turns taking care of Will and eventually saw each other on Sunday. This weekend was a party with some friends, Ashley's dance competition and a Sunday outside. In between we tried to get some things done around the house...two pretty good weekends with little to complain about.
The only other bit of news is I have nailed down the date I return to Germany. I go back May 5th and will more than likely be there for over a week. I should know for sure my scheduled return date tomorrow. I'm not sure why, but we are not going to use the new antibody when I return this trip. I haven't discussed this with Dr. Jacob, her assistant sent me a message, so I'm planning on a trip similar to the one in January. I'll probably have two treatments with Dr. Vogl in the hospital and lots of recovery meds in the clinic. I knew a May visit was really pushing my ability to receive the new antibody since it's release was scheduled some time in April, so I'll find out more when I get there. Of course I've developed lots of questions about this antibody since January, so I think I'll feel better being able to discuss them with Dr. Jacob again before going right into a treatment. Everything works out for a reason, I'm sure this is no exception.
That's it for now...I'll try to avoid the long lay-offs from this journal again. As always I appreciate everyone's well wishes and their continued support.

More updates to come...

Love,

Tony

Spring is here?

2009-03-01T20:15:00.009-05:00

I've talked about this day for to long for me not to mention it, so happy March 1st to everyone. In spring like fashion we brought March in with a sunny, breezy, and frigid day, but nonetheless I know these days will be coming to an end soon. Another busy week for me. Work has not slowed much, but at least I feel like I'm starting to climb out of the hole. Every week brings something new, so we'll see how things are at the end of this week.

I'm a couple hours away from my last three chemo pills for another two weeks. The past few days I haven't felt great, but I'm functioning and hoping that I'll start feeling better once the chemo stops. I plan on e-mailing Dr. Jacob this week because I'm beginning to wonder if the injections I receive on Wednesday night effect how I feel over the weekend. This is the second week in a row where I felt pretty bad on Friday, start to feel better Saturday and finally feel a little more like myself on Sunday. Last week wasn't as bad as this one, so I need to tell Dr. Jacob what is going on to see if she has any thoughts. I drew some blood Friday as well to see where my levels are just to make sure there isn't anything going on I can see. I'm getting pretty good at reading blood tests these days, which is a little sad, but effective when I need the information.

Crystal and Ashley were away at Ashley's dance competition this weekend, so the guys weekend with William didn't go exactly as planned. I was hoping we could do something fun Friday night, but instead I found myself on the couch asking Will to get me things. He is an amazing kid, so content and happy to "go with the flow". He didn't know I had plans for us, so he wasn't as disappointed as I was, but these are the times where I wish I wasn't dealing with my illness. Things aren't as bad as they used to be where I was afraid to put anything on the calendar in fear that I wouldn't be feeling good, but I was reminded this weekend that those times can still occur.

I had plans Saturday to get together with my some of my cousins, dad and grandfather to play cards. William came along to be with the guys, but mostly to hang out with grandma for the day. I wasn't feeling my best, but would have had to be in really bad shape to miss Saturday. The company was great and the cards were pretty good, so I really enjoyed the day. Being with those guys was good for my health...lots of laughs. We got home late Saturday night and by Sunday morning I was starting to feel more like myself again. Crystal and Ashley were home from their competition in Dayton where the girls performed really well. Overall the weekend was a success for everyone.

Quick story before I close tonight. Like most parents, I want to be able to shape my kids with some of my beliefs regarding some of the tougher subjects including God and death. Since the day I was diagnosed I've always tried to find subtle ways in general conversation that may help explain to them my beliefs on God and death. One of my biggest fears of dying is not being able to share with my children how I feel about death, but unfortunately I don't believe they are old enough to understand. We have had conversations that focused on God or on death, but those conversations don't occur often and are not ones I push unless Ashley or William ask. When those times do occur though, I look forward to the challenge of simplifying my beliefs for their understanding.

This week I was getting William ready for bed and I thought one of those moments had come. Out of no where he asks me "when Sampson (our cat) gets old he goes to see God, right?" My immediate thought was that I wasn't quite prepared for this conversation at the moment, but I'll go with it and see where this takes us. I got down on my knee and told him he was right, that Sampson will go see God when he gets old. Will looked at me and said "I'm sure going to miss Sampson." I pulled him close to me and told him that I will miss him too, but God will take good care of him. I was thinking this was a pretty important moment and wanted to choose my words carefully. Before I could continue this "serious talk" with my son, Will says "I can't wait to get another pet dad." With a big smile on my face, our "serious talk" came to an end and I was left wondering how great it would be to be able to think like a four year old again.

More updates to come...

Love,

Tony

Weekly review...

2009-02-22T10:57:00.005-05:00

One week has past since I started back on chemo. I'm definitely not going to complain about how I feel, but there has been a difference in both my mental and physical health this past week. Nothing like the "old days" hovering over a toilet or spending days at a time in bed, but there are just enough subtle differences to slow me down a little as well as remind me once again what I'm dealing with. Things have been going so well and I've been so busy that I almost forgot living a "normal" life isn't always normal for us. That's a good thing though, I continue to believe that we are heading in the right direction and living that "normal" life will be here soon.

Physically the main issue is my abdominal area. Although I'm not bloated, I feel like it most of the time. The pain hasn't really curbed my appetite, but can be uncomfortable at times. This is where the mental thing comes in where you don't know exactly what is going on inside you body, so the worry about what is happening can be worse than the actual physical pain. I continue to take all my meds and take all my injections...I will not sway from what I am told to do. I assume I'm dealing with some inflammation, so I'm trying to load up on the things that assist my body with inflammation. I've backed down to one IV a week for now, knowing that if I need to add a second for support I will.

Other than my abdomen, I have some minor issues with tingling in my feet, minor headaches, sensitivity of my teeth and nose. None of these things are able to slow me down, they just add to the reminder of the drugs I'm taking. Of course I still get tired at night, but Crystal has reminded me lately that many people living "normal" lives are tired at the end of the day so I shouldn't be so hard on myself. She's right, as usual. I've been working long hours and trying to find time for Crystal and the kids which would wear me down if my health was perfect. I really want to be able to exercise and not sure if I'm up to that yet so that is why I beat myself up. One step at a time, I know.

Ashley was sick all week so I tried to stay away from her as much as possible. Crystal, once more, carried the load getting up with her at night and staying home with her so I didn't risk getting sick. I hated not being able to comfort her like I wanted to, but I really couldn't risk getting sick. She missed school Tuesday through Friday which really bummed her out since she hasn't missed a day of school since she started. I told her that she should be proud of not missing school, but if the streak continued she would probably look back someday and wonder what she was thinking. She'll understand that when she gets older I'm sure. She has a father that needs to become a better role model when it comes to school...thank goodness her mother set the example by being the bookworm.

William and I went to our first IU game last weekend with our friends Ty and Davis. Davis and Will go to school together, so "the guys" made the trek down to Bloomington to see the worst team (from a record standpoint) in IU history. They lost, of course, but we had a great time. Some would disagree, but there are few better places in America to watch a college basketball game than Assembly Hall. The team has been outmanned all year, but the IU fans have backed them because they play with so much heart and energy. It felt good to be there and it was a special day for me since it was William's first IU basketball experience. Thanks to the Gerig's for allowing us tag along.

The last week in February is one of my favorite weeks of the year so I'm happy that it is here. There is really no special reason besides getting into the month of March. Even though I know it can be cold and snowy in March, I also know this weather is soon coming to an end. I really tried to "enjoy" this winter, but my patience is wearing. I'll be happy with 40's and 50's until we officially hit Spring--anything above freezing at this point would be a bonus. There is nothing better than a warm, sunny day to take anyone out of a funk, I know it would help me.

That's pretty much the news for the week. We'll see what this week brings. We keep plugging along...

More updates to come...

Love,

Tony

Catching up...

2009-02-15T10:06:00.002-05:00

Two weeks has past since I posted an update. I've been getting some e-mails and phone calls lately asking if I was okay, so I knew I needed write something soon. The bottom line is I'm feeling fine and everything with my health seems to be going in the right direction.

Bad excuse, but since I have returned from Germany I've been so busy at work that I haven't had fifteen minutes to write. My day consists of going to work, coming home to eat, spend a couple hours with Crystal and the kids, and going back to work until I go to bed. I've been telling people that it is a fairly sad existence, but I know things will slow down to a normal pace soon. I would be discouraged if I didn't see a light at the end of the tunnel, but I'm beginning to see one, so this "phase" should end soon. Crystal continues to warn me to get the rest I need and reminds me of my priorities. She is right (as usual), I know things will get better at work soon. Our weekends have been just as busy as our work weeks. Ashley's calendar keeps us running most of the time and we spent a weekend in Cincinnati last weekend.

Although all of these things have kept us really busy, I am happy that I'm feeling well enough to do them. I still get tired early and find myself in bed most nights around 9:30 or 10:00, but feel well rested when I wake up. I remind myself that I just had two major treatments three weeks ago so should be happy that I'm doing as well as I am considering what my body has been through. I know the energy will return soon.

I spoke briefly to Dr. Jacob soon after my last journal entry. She called while I was at work so I wasn't really prepared for her, but we did speak for a few minutes to go over the results of all my tests. I didn't get much detail, but I'll spare you the details I have and just say that overall my results have improved since our October trip. I'm obviously excited about where we are and are yet one more indicator that we are moving in the right direction. The chemosensitivity test didn't change as far as what antibodies, natural and traditional medicines would respond to my tumors so we are going to continue on the same plan as before.

What this means is I start chemo again tomorrow. This is the same chemo I was taking last time and (knock on wood) wasn't to bad. I had some minor side effects, but nothing that seemed to knock me out. I'll be on a two week on, two week off schedule until I return to Germany. Because I had so many issues between October and January with my surgery, infections, illnesses, etc. I only took two cycles. This time we will have a chance to get through a full three month cycle of UFT, hopefully enough to see some sort of effect. I'm not overly excited about going back on chemo, but the dosages are low and if the last time was any indicator of how I'll feel I should be fine.

I've missed a couple of IVs based on my schedule at work, but overall have been pretty consistent. I've been able to do many IVs at home and have been keeping up with the five injections per week with the help of my angel nurse next door, Carol. My blood test results are really good. When I spoke to Dr. Jacob I actually asked if I should be concerned that they were so good. Stupid question I know, but my liver enzymes are practically back to normal, red, white blood cells are within normal range, my potassium is back to normal, etc. I haven't seen results like this on a blood tests for a long time. We'll continue to monitor my levels and see what happens. I've gained a few pounds over the last couple of weeks too which is also a good sign. I don't think anyone but me really can tell the difference, but it's something I have been asked to monitor. I still eat healthy, but I'm not "crazy" about my diet anymore, so gaining weight on what I eat is always a positive sign.

So the plan is simple. Do my IVs one to two times per week, keep up with my injections, take all my daily pills, and take my chemo when I'm supposed to. The plan is to return to Germany early May for more extensive treatment and for another "check-up". We continue to be thankful for all the support we continue to receive. We're looking forward to some warmer weather soon and catching up with friends and family. Each day is a good day.

More updates to come (sooner than later)...

Love,

Tony

Non stop since being home...

2009-01-31T09:14:00.005-05:00

Our trip from the airport to our house took longer than our trip from Atlanta to Indianapolis due to the snow. Wasn't the welcome home party Crystal and I were hoping for, but we were happy that we made it home before the storm really hit. We could have been stuck in an airport somewhere trying to get home so I don't want to complain.

I've been non-stop since our return home. Although Dr. Jacob gave me strict instructions to rest, I haven't had much time to do so. We are going to bed around 9 o'clock every night and I'm doing four to five hours of IVs every day, so I guess I consider that "rest". I'm really busy catching up at work and at home so even though I'm "resting" it doesn't always feel that way. Good news is I've been feeling fairly good overall. I can feel when I'm getting tired so I take the necessary breaks and have been very careful not to over exert myself.

Blood tests came back yesterday and I'm actually a little surprised from the results. All my levels are normal, including liver enzymes, white / red blood cells, etc. Honestly that is hard for me to believe based on what I have been through, but I'm not complaining. I guess that is the reason I have been feeling pretty good. The news of my blood test gives me a little pep in my step. My body is doing a great job tolerating these treatments and I can't help but think that will correlate to better overall results. I've done everything Dr. Jacob has asked me to do since I've returned and I know that has made a difference as well. Special thanks to our angel next door, Carol Haney, for coming over late Tuesday night when we returned from Germany to help me access my port so I didn't miss any of my treatments.

Dr. Jacob sent me the results of all my other tests yesterday. I'm not great at deciphering the German, but from what I can read and understand the results look very positive. There were some new tests she ran which will need some explanation before I publish the results. We are trying to find a time we can talk early this week to go over the results and talk about what I should be doing next. I'm anxious to speak with her to get her opinion on the results. I have this funny feeling she is going to have something else up her sleeve on some things I should be doing next. Once I speak with her I'll publish the results.

I want to thank everyone for the well wishes while we were gone and since we have returned. I have not made many phone calls or returned e-mails since I've been home, but please know I appreciate all of the support. I continue to know that I don't walk alone on this journey which is a big reason for my success. I am very aware that I still have work to do, but I haven't felt this good about the status of my disease in a long time. I've come a long way in three months.

More updates to come...

Love,

Tony

Coming home...

2009-01-26T15:27:00.010-05:00

Steroids help the recovery process after my chemoembolization treatment with Dr. Vogl. While the steroids help my body cope with the side effects they also put me in a very hormonal state after the procedure. I feel like a pregnant teen age boy going through puberty during a menstrual cycle on the brink of menopause. I have to lay flat in a bed for four hours doing nothing but letting my mind wander. One moment I'm joking around with the nurses, the next I've got tears running down my cheeks or I want to throw something across the room and then I circle back through depression, worry and happiness. Thank goodness I'm not bed ridden for more than four hours. I make this point because I realize when I update this journal I can be emotional and I need to be careful at this time based on my steroid use.

We said our goodbyes to Dr. Jacob and the staff this morning and made our way back to Frankfurt. I really wasn't looking forward to the procedure this morning because I was really feeling like I was getting some energy and feeling better. I knew I would more than likely take a couple steps back after today, but I also know I come here for a reason, so not having the procedure didn't even cross my mind. Feeling good is a daily goal to get me to my ultimate cancer free goal and I realize I have to make continued sacrifices to make that happen. What is another week or two when looking at the overall picture?

The procedure went ok. The incision spot Dr. Vogl used last Monday was used again today, so I'll use the word tender to describe how I felt as he performed his magic. He took a little longer today and found out later when we met with him that he was a little more aggressive today in what he did which required a little more time. I'm not going to complain, I want aggressive, but it came as somewhat of a surprise from what we expected. Crystal and I left his office wondering why we weren't more "aggressive" last Monday, but we'll talk to Dr. Jacob more about that this week. I believe it is because they weren't exactly sure when I arrived last Monday the status of my lesions. We knew going into today exactly what we were dealing with. When we spoke to Dr. Vogl before we left he showed us pictures of my lungs and felt like we had made progress this week with those lesions and was very satisfied with the progress in my liver. All of this is very good news and was a great way to end the trip. We will have a follow-up call with Dr. Jacob later this week or early next week so she can check in on my status and finalize my plan after all of the tests she sent out come back.

We arrived at the hospital today and sat next to a man from England that turned to me and asked if I was on a plane coming in from London. I thought maybe something strange had happened to that plane, but he was asking because he was on that plane and thought he recognized me. I explained to him I was from the States and come here for the doctors. Long story short, he was a patient of Dr. Jacobs too, coming from England to see Dr. Vogl. Colon cancer diagnosis with liver metastasis. His son had non-Hodgkin’s lymphoma incurable by the US (MD Anderson) and England, came to Germany and was cancer free after four months. This was not a chance encounter. He spoke to me of the "risk" that he and his son took to put aside what two country's physicians told him which ultimately led him to Germany. They were not willing to go home and die or kill themselves trying the "traditional" way. They carry faith in themselves and not just say they will do anything, but will actually do anything to help themselves find the road that leads to their ultimate healing. Like I said, to me this wasn't a chance meeting, and having that little pep talk from him to myself was comforting before I went in for my treatment.

Tonight is an emotional night... 1) We made it through round two in Germany and have had some positive news. 2) I realize I'm doing everything I can possibly do to heal myself without regrets. 3) I'm blessed to have people surrounding me to allow this to happen. 4) I'm blessed with a wonderfully supportive wife who has been by my side through all of this. We are so thankful that we have been able to travel to Europe three times together in the last seven months. The circumstances aren't optimal, but our relationship continues to bloom from it and our experiences will live with us forever. 5) Of course the steroids make a difference with my emotions too.

Tonight though, emotions aside, I'm a pretty lucky guy. Thanks again to all of you to continue to be a part of my journey. Can't wait to get home to Indiana--even if we do land to six inches of snow.

More updates to come...

Love,

Tony

Germany trip two coming to an end...

2009-01-25T06:43:00.002-05:00

Last full day at the Klinic today and we’re trying to get everything in order. Because we are going home after my second chemoembolism treatment Monday, we are bringing back quite a bit more medication to get the supportive IVs at home that I typically receive in Germany. Dr. Jacob has made it very clear to me that I need to be extra careful next week and prepare for the worst. Obviously I’m hoping for the best, but I know these treatments are hard on the body and getting the rest and medications I need next week will be extremely important.

Yesterday was a fairly typically day other than another man dropping his pants in front of Crystal. She is officially two for two on her trips to Germany seeing another mans pants fall below his ankles. This time it was an older man walking down the hallway of the Klinic. As we were sitting in the library watching him walk by, his pants decided to give on him leaving the three of us stunned. I’m not sure what was funnier, the actual event of his pants coming down or seeing the man kind of shrug his shoulders and continue walking by with his pants around his ankles. We had a good laugh and hope that the elderly man finds himself a nice belt sometime soon. The rest of the day went as planned…came to the Klinic to receive my IVs, went to lunch with Dr. Jacob and some of the other employees at the Klinic, spent some time catching up on e-mails, ordered some take away pizza and went back to the apartment to watch some movies. Not much different than being at home.

We had an extended conversation with Dr. Jacob yesterday during our daily “review” with her. She was telling me about a conference she went to on Friday in Munich about an antibody the Germans have been testing for the past twenty years. The German equivalent to our FDA approved this antibody recently and Dr. Jacob thinks it will be in the market in Germany June or July. She said she sat in the conference and thought about my case while listening to them talk. She explained to me why she was so excited about this antibody. One, my body has never seen it. One of my biggest problems is that my body has become resistant to so many things that I’m limited to the full buffet of treatment. Two, this antibody works in many ways fighting different types of cells. Many of the medications I take now are “monoeffective”, so we have to combine several things to get the effects we want. Lastly, this would be given in low doses based on its potency, so hopefully the side effects would be minimal.

This antibody has been tested systemically, but Dr. Jacob wants to try local treatment into my liver via Dr. Vogl. She thinks she can get the drug before it is actually released so when I come back in late April / early May I could try it. Obviously I’m excited about the news and what it could do for me, but at the same time I must admit it’s a little scary thinking I could be one of the first patients using this antibody locally. Crystal jokingly asked if the US might have this antibody ready for patients in ten years and Dr. Jacob jokingly said maybe longer. I try to think logically and Dr. Jacob used the word logical many times when talking about this with me. She said it makes so much sense with what I have and is the most logical thing to do. I like that.

As exciting as the news was, the conversation was still bittersweet. We continue to make progress, but she also made it very clear I’m battling a very aggressive cancer and we have lots of work to do. We had another ultrasound today to see if I’ve had decreased inflammation in my liver and to check to see how the first chemoembolism treatment effected my lesions. Progress is the continued theme…there was still some inflammation, but overall there is quite a bit of dead tissue and necrosis, so we know what we are doing is working.

Tomorrow we head back to Frankfurt to see Dr. Vogl. One last treatment before we head home. I continue to be really tired, but I’m still not sure if the tiredness comes from the treatments or the six hour time difference that I have not become accustomed to yet. I guessing a little bit of both. We land Tuesday night and both Crystal and I are looking forward to coming home and getting those kids in our arms. Won’t be long….we appreciate the help we have received from so many people while we were gone, especially Crystal’s mom, Donna, who stayed with them through the week. None of this could happen without the help we have received.

More updates to come…

Love,

Tony

The start of our new plan...

2009-01-23T07:19:00.001-05:00

After two full days in the Klinic I feel like we are finally getting some answers and formulating our next plan. Every time my cancer makes a move I’m eager to “counter attack” and I think we are close to knowing our next move.

Overall today was a really positive day. The day started with the results of my blood tests which are remarkable based on what my body has been through. These results, once more, helped solidify that my liver function is really getting better. For the most part, my liver enzymes are normal except for one level which is high based on the chemoembolism treatment. When I was here in October my counts were much higher after the chemoembolism treatments, so we know my liver is not only tolerating treatment better, but functioning better as well. Both my red and white blood cell counts are within the normal range as well which is very positive. I could go into detail about each marker, but overall my blood is telling me that my body is functioning like it should.

After we reviewed the blood tests and finished my IVs for the day we had an ultrasound to look at my liver. This was icing on the cake as far as showing improvement in my liver. Crystal and I have a hard time deciphering everything Dr. Jacob points out, but her conclusion was definitive that my liver is better. She was able to show us the “dead” tissue and more necrosis occurring in the liver that would not only show up as growth on a PET scan, but also “light up” as more active cells. Again, all of this is difficult to explain in a short journal, but after three ultrasounds of my liver it’s even obvious to me the improvement.

We’re making progress which is great, but it’s evident that there is still disease in my liver that needs to be addressed. Good news is there doesn’t seem to be spots that don’t have either dead tissue around them or necrosis inside of them. The size of my liver is smaller which is very positive and I have no pain. There were some areas in my liver that were inflamed due to the treatment I had Monday, so we are going to wait another couple of days and do another ultrasound to see if we can get a clearer picture of those areas as well. She took an ultrasound of my spleen and kidneys looking for unwanted fluid and found none, so I continue to thank my body for really performing and tolerating these amazing treatments.

Later in the day we had our meeting with Dr. Friedriekson who is another counseling oncologist who brings additional ideas to the table. We talked about the last several days to bring him up to speed on what is going on and I of course had plenty of questions for him. The not so good news is that both Dr. Jacob and Dr. Friedriekson do not understand why I had progression in my lungs. They both agree these were dormant cancer cells that over the last few months decided to become active and grow. The problem is that these cells somehow avoided the treatments we were doing. Dr. Friedriekson had some great ideas to help counteract as well as some possible explanation on why these progressive tumors “passed through the cracks.”

So the plan as of now is to return to Frankfurt on Monday and have another treatment with Dr. Vogl. I’m going to be bringing home quite of bit of medication to help my body recover like I do here. I’ll be a little nervous leaving because I know the second treatment last time was more difficult than the first. Now I’ll be doing a second treatment and jumping on a plane to come home. I know Dr. Jacob has confidence in me and is happy with how I am doing or she wouldn’t send me home. We’ve added several medications and injections to help boost my immune system that I will be taking the remainder of the week and when I return. We did another chemosensitivity test Tuesday and won’t get the results until I’m gone next week so the systemic chemo will be the “missing piece” of my plan until I get home. Dr. Jacob thinks we need to change to another chemo, but wanted the chemosensitivity test results to be sure. I’ll let everything play itself out and we’ll return back “home” late April / early May.

In light of Germany giving us good news today I took Crystal out to an authentic Bavarian Brewhouse. Of course I didn’t drink, but Crystal had a beer and we ate authentic German food and enjoyed the atmosphere of those around us. Overall I’m feeling ok. The mornings seem to be the worst. Once I get up and get my IVs I seem to start feeling better. We’ll see how the rest of the week plays out…each day seems to be a little different.

More updates to come…

Love,

Tony

Getting some answers...

2009-01-21T08:06:00.001-05:00

As tired as we were when we went to bed Monday night in Frankfurt, neither Crystal nor I slept all that great. We went to bed at 7:30 pm (1:30 pm EST) thinking we would sleep through the night but I found myself up out of bed by 11:30pm doing some work on the computer. Crystal soon followed and we split our long night of sleep into two short shifts.

We travelled to the Klinic from Frankfurt on Tuesday morning. Our trip was slowed by our rental car exchange in Munich and the snow. Once we got into Munich the snow started and it got worse as we travelled south to the Klinic. The bad news was we were given a car that didn’t have snow tires. The rental car attendant warned me and I really didn’t think we would have a problem until the snow kept coming. We only got stuck once in a parking lot when leaving the Klinic and needed some help getting out, but they do a very good job of plowing the main roads and sidewalks so once on the main roads we were fine. We didn’t have time to check the extended forecast, but hoping the snow subsides the remainder of the week. If not, we’ll probably need to change cars again.

It was nice to be “home” again in the Klinic. We had an extended conversation about my scan results with Dr. Jacob and she seems a little more optimistic about the results. She wanted to follow up with Dr. Vogl based on the conversation we had with him and she also wanted to send the scan to her radiologist to double check his thoughts. She is convinced that the results are not as bad as the US has indicated, but wants to be sure on the progression, if any. She, like me, believes that if I am having progression indicated by the results I would be incurring other problems as well. She thinks I would be having pain, severe fatigue, losing weight, loss of color, and bad blood tests. We talked about the issues I had after coming home with Germany and she doesn’t believe any of those issues were cancer related.

Quick update this morning:
Dr. Jacob did speak to Dr. Vogl last night and we are now 99% certain that the disease in my liver is stable or better. My blood tests came back today and all of my liver enzymes are better than they were three months ago and that is after the Dr. Vogl procedure which typically raises those levels. The actual pictures and my liver functions make Dr. Jacob much more certain that my liver is functioning much better than it was three months ago…which is progress. She still sent the PET scan to another radiologist for one more opinion, but unless he sees something significantly different I don’t think we’re going to get different news.
The disappointing news is there are two new spots in my lungs. We’re going to look at them tomorrow, but she knows for certain they are new. This makes her want to change some of my systemic treatment that we are doing as well as go back to Dr. Vogl next Monday for one more chemoembolism treatment focusing on my lungs. We took blood again today for another chemosensitivity test to see if anything has changed (which is possible) and to make sure we choose the correct systemic treatment for my lungs. This test will also give me a tumor marker which will be another important number to tell if my disease is better, worse, or stable.
All in all I think the news is positive. Obviously I’m a little disappointed about my lungs and want to make sure we attack those lesions, but keeping the liver in check right now is my biggest concern and I feel like we are doing that. We’re going to do an ultrasound tomorrow which will allow us to see the liver up close and personal. I’m really happy to be back and be surrounded by continued hope and optimism. As of now looks like we are still on schedule to come home on Tuesday…I don’t anticipate that changing unless something major occurs.

Overall I’m feeling pretty good. The steroids won’t wear off for another day or two from the procedure so I’ll have a couple days before I typically need a little more IV attention, but at the same time if my liver is functioning better than maybe I won’t need that extra boost. We’ll see what happens, it’s just good to be here and feel safe again.

More updates to come…

Love,

Tony

Annoyances (warning: this ones a long one)...

2009-01-20T09:41:00.003-05:00

In the weeks before we left for Germany there seemed to be several “little things” that happened to Crystal and I. Some call them Murphy’s law, I’m sticking to calling them our little annoyances. These things have mainly pertained to billing issues from doctor’s offices, airlines, utility bills, and even some self-imposed issues from things that just happen. Not end of the world type stuff, and most of them have been or seem fixable without “penalty”, but they have been really annoying issues that have to be addressed in the midst of our busy lives and bigger issues. I can’t say I don’t get frustrated, but at the same time I have been trying to keep things in perspective and I realize for every annoyance we have to follow up on there are many other day to day activities that occur seamlessly.

These annoyances are all good lessons in the forgiveness process and I bring them up because the start of our trip to Germany became borderline comical with the small issues we seemed to face. As usual, we were running around slightly frantic while getting ready Sunday morning. We left the house on time, but also left with that feeling of “it’s a matter of time before we realize what we forgot feeling” because we had to rush. So we were both a little frazzled from rushing around as we pulled out of our driveway. I told Crystal in the car that as long as we had our passports, toothbrushes, and the PET scan we could make due all week. If you know Crystal, the probability of her forgetting something is slim, but we’ve all been there and it further sets up my lead in to these annoyances and how we were feeling at the time.

Crystal’s brother, Steve, was taking us to the airport. To save time we were dropping our kids over at his house to play with his kids and taking our van to the airport. First self-imposed annoyance was our first stop. I had to make some copies of some medical reports to take with me and download some information from our school computer onto a memory stick. We got to the school which is only a few miles away and realized we didn’t have a key to get into the building. Time was ticking, but had no choice but to do what we needed to do. Luckily Crystal’s mom, Donna, was still at our house wrapping up some loose ends when she came over to see us off. We called and she rushed over to let us in the building. Problem one averted.

Once at Steve’s, we said our goodbyes to the kids and off we were. The kids did great as we left and we both know they will be fine this week. As we got onto the highway we soon remembered that the van’s windshield wiper fluid was not working. I noticed this Saturday night as we were leaving to go out as a family to see friends and refilled the tank, but didn’t have time to check the pump or play mechanic when we first noticed it. Usually no big deal but the roads were perfect for the day where you needed wiper fluid. Cars were spitting enough muck on your windshield to make it hard to see, but not wet enough to use your wipers without making things worse. Soon Crystal was driving down I-70 and all I could think about was that ridiculous Jim Carey movie Pet Detective where he rides down the highway with his head out the window. Crystal did her best to find those tiny pinholes of vision and Steve and I turned MacGuyver on the situation. Good news was I grabbed a bottle of water from our garage so Steve thought he may be able to reach out the window and wet the windshield, bad news was the bottle was frozen from the cold weather. Now we’re driving down the highway with the heat on high trying to melt the ice to help clean the windshield. You get the picture. Long story short we made it to the airport without pulling over or getting any water out of the bottle, but not without some laughter. We passed through problem two (hopefully Steve had a better return trip home…he had more time to pull over so I’m sure it was better).

We walk into an empty airport, got our boarding passes and begin to check our bags. We bought a new piece of luggage for Christmas because our big bag was getting a little worn. I bought a big piece because the airlines are getting so stingy with charging for extra luggage. Eventhough we both get two free checked bags for an international flight, Crystal and I were so proud of ourselves for getting everything into two suitcases (admittedly they were both 99% full), but I thought the less luggage we would have to haul through airports, rental car facilities, hotels, etc. would be better. As the check-in attendant took our bags she soon informed us that one of our bags was nine pounds overweight. We would have to dump some stuff, somehow carry it on, or rearrange how we packed. Steve was gone, we had no extra bag and the one carryon we had was relatively full. We opted to rearrange the suitcases and show the world our underwear. As I looked back, the kiosk that was a ghost town moments ago had now turned into a thriving metropolis. The one open lane Crystal and I started now had four people behind us and more on the way. We made it work by rearranging our luggage in front of a crowd that seemed like thousands and most importantly made it through annoyance number three.

I was looking forward to not getting the full body search at security since this was my first time flying without my internal pump. With the pump I always had to get stopped and do the whole pat down thing during the security check. I smiled as I didn’t beep through the security door and smiled even bigger when the pulled me aside for more checks. It wasn’t a full blown body search as usual with the rubber gloves, but it was an extra step and by now, after annoyance four, I realized this was going to be a day where perspective would be important. Small issue on the flight to Atlanta that lead to number five. Crystal and I had a two hour lay over in Atlanta so the twenty minute wait the pilot relayed to us on the Indianapolis runway wasn’t terrible, but was enough to include in this entry.

We get to Atlanta and had enough time to sit down and have a quick snack since we both knew the two squares we were going to receive going to Germany weren’t exactly five star quality (not complaining, just making a point). There was a little Mexican restaurant right next to our gate so sat down and make the decision to split a super nacho versus a chicken quesadilla. Someone should have tapped us on the shoulder and asked us what in the hell we were thinking to consider Mexican right before a nine hour flight. That same person should have beaten us over the head when we went with the super nachos with chili over the rather plain chicken quesadilla. We laughed about it when the food arrived as we watched our neighbors eat a baked potato with broccoli, but down the hatchet the chips went. I included this piece in my annoyance because when I think of super nachos we thought we would get lettuce, tomatoes, peppers, beans, etc. This one came with chili (we were smart enough to ask for the chili on the side), cheese and salsa. Not so super.

On the plane to Germany Crystal and I were hoping we would have an extra seat next to us the plane so we could spread out a little. Annoyance number seven came into play when somehow our two window seats were switched to two inside row seats when we checked in so we had to play the seating lottery and hope the seat next to us was empty. Of course it wasn’t and there were just enough empty seats where most everyone could sit comfortably around us except for us. Annoyance number eight came when we were up in the air, I started a movie, and my head set didn’t work. Luckily, this annoyance worked out to our benefit since we asked the man sitting next to Crystal to move back a row where there were two empty seats so Crystal and I could use the two workable headsets in the row. The comedy of errors continued but it seemed to be turning our way.

Then I fell finally fell asleep and woke up forty five minutes into my deep sleep to the crying of two babies. Not only were our window seats changed but we were sitting strategically between to sets of babies…one about six rows in front of us and one about six rows behind us. After a nice movie and mediocre meal I settled into my nap and woke up to the sound of two babies having a competition on who could cry the loudest. The winner was by far the one behind me, but annoyance number nine really had no winners. I always feel badly for the parents of these kids, because I know it’s harder on them then it is for all the other passengers. Many of us have flown with kids and have been through the stress of worrying about an airplane meltdown. Although I couldn’t sleep I knew the babies weren’t purposely keeping me awake and sending them and / or the parents negative energy wouldn’t help the situation. Reading became my activity of choice until the babies wore themselves down.

Hard to believe we had no customs or baggage issues in Frankfurt, but we hit double digit annoyances while getting the rental car. First was when we went to pickup the car they said I was at the wrong terminal because I didn’t give them my flight info so they needed to bring the car to me or I had to take a lesser car. We had two hours to get to the hospital so we didn’t mind waiting the half hour. We made the trek to our car with our limited luggage, loaded the car, jumped in and saw that the car was a manual transmission. I can drive a manual, but Crystal is not skilled on one and I didn’t want to take a chance with driving one with my leg if I had complications at the hospital and also wanted Crystal to be able to drive in an emergency situation. So we got out, walked back to the desk in the terminal and waiting another half hour as the attendant searched for an automatic transmission in the vicinity. Our options became take a car that would probably fit in our new luggage or keep the car we had and drive to Munich tomorrow on the way to the clinic and switch cars. Crystal checked four other rental places as we waited and we soon learned that automatic transmissions were as popular as driving pick-ups in Germany. She added a cargo van to our option, but that just makes me laugh thinking about her and I driving around Germany in a large cargo van. Not ideal, but we chose option two from our rental place…drive to Munich tomorrow. We actually got an upgraded vehicle so even though it will be a thirty to forty minutes out of our way tomorrow, Crystal will have the option to drive all week and we’ll have a very nice and even safer car (with the weather you never know).

Finally we made it to the hospital fifteen minutes before my ten o’clock appointment (4am in the US). After a little confusion we were sent back and I was scanned, prepped and finished by 10:45. We had to do the four hour observation again, which is a little annoying, but better safe than sorry. Crystal snuck into my area, cozied (probably a bad term) up in my bed and we were both able to sleep on and off for a coupe of hours. After the hospital Crystal and I went to a lovely Marriott donated by our good friend Rob Petruska had a very nice meal and went to bed---all without encountering any additional annoyances.

That was our trip into Germany. By themselves none of these annoyances would have made print, but together made the first day a test of patience and forgiveness. I’m becoming really good at not getting angry and remembering to forgive in the process and keep things in perspective.

From a medical standpoint we did get some news from Dr. Vogl. I hesitate to publish much at this point because there is still some confusion in my mind as to what the results really are. Maybe I shouldn't use the word confusion, Crystal and I just need more details. Dr. Vogl is a man of few words and you know if someone like Crystal can grill him and still not quite understand the conclusion it's evident we need to get more facts. We know Dr. Jacob will be very detailed with us and allow us to ask additional questions. The bottom line from Dr. Vogl was that my tumors are not as bad as the report explained in the US report. He did say, however, that he thought there was some new spots particullary in the lungs that he was focusing on during the chemoemboilzation treatment. He thought everything we touched last time was stable and said the tumors are like terroist and we have to continue to chase them down. He showed us pictures, but again, both Crystal and I couldn't get a firm read on exactly what we were seeing. The different scans all look so close it's hard to tell what's new, old, smaller or bigger. The different coloration is the only thing that is noticeable. We're going to sit tight another day, get the opinion from Dr. Jacob and go from there.

I feel fine from the treatment and looking forward to less annoyances as the week continues.

More updates to come...

Love,

Tony

Lessons learned...

2009-01-17T23:08:00.001-05:00

Tomorrow Crystal and I make our second journey to Germany. I’ve said it in the journal and to numerous people that I am really looking forward to this trip. Not sure I’m so excited about seeing Dr. Vogl and his scalpel, but I am looking forward to hearing his opinion along with all the other doctor’s while I am there. One of the difficult parts about having treatment in Germany is losing that comfort zone once you are gone. No matter what the news, I know I will feel comforted there and that’s something I could use right now. Dr. Jacob e-mailed me today and said after chemoembolization the lesions always show up bigger. I had two doses of chemoembolization in October and will have another on Monday. No guarantee from her, but it was nice to hear it again that she wants to see the scans before I “freak”.

This trip will be much different than the first. We know our way around the area, know the “hot spots”, have become really advanced in the German language (I think I’ve doubled my vocabulary from two words to four this trip) and most importantly, feel like we pretty much know what to expect. The gang (other patients) and the weather will be different, but bottom line is we’re feeling 100% less anxious than we did three months ago the night before we were leaving.

We’ve learned some things from the last trip that we hope will make this trip better considering our first experiences. We…
· …brushed up on our 80’s music all week so we can sing along in the restaurants.
· …packed washcloths since they don’t exist in Germany
· …tried to accommodate a pillow or two in our luggage due to the German pillow being the equivalent of a sheet with a pack of cotton balls in between. These people are master engineers, but can’t design a suitable pillow? Maybe after all the beer a pillow doesn’t matter.
· …are much more cognizant that there are some areas on the autobahn that have speed limits.
· …learned to stay away from the unrefrigerated milk, the green and pink eggs, as well as any meat on a menu that you are not absolutely certain about.
· …tried to rent a pick-up truck just to see if pick-ups are actually driven in Germany. If you’re wondering about the results our rental seats five comfortable (inside) and we won’t be able to haul any large loads.
· …have our Sunday meals planned when the entire town basically shuts down. I still say the US needs to go back to closing everything on Sunday.
· …won’t be alarmed when we see dogs entering restaurants.
There’s plenty more, but I’ll spare everyone my attempt at humor. Most of all we have learned to try to enjoy the time we are there even though the circumstances may not always seem the best. I try not to get to high during the good times and not to down during the bad times. We continue to ask the Holy Spirit for guidance and know we are not walking alone in this journey.

Thanks, as always, to all the well wishes from so many of you. I’m still convinced we can do this!

More updates to come, from the mother country…

Love,

Tony

I'll need that second opinion...

2009-01-14T21:06:00.003-05:00

No use beating around the bush tonight. Scan results are in and the results were not what I wanted. Unfortunately from the perspective of the US radiologist there seems to be an overall theme of tumor progression in both my liver and lungs. I'm not sure the news has completely set in, but at the same time I'm still holding out to see what the doctors in Germany say before I completely bring my emotions into play. Disappointed doesn't do justice to what I feel tonight. Dr. Jacob will not "sugar coat" the results so I know that if there is true progression she'll let me know. At the same time, I think I'll feel more comfortable being in Germany if the news isn't what I was hoping knowing we will have an immediate plan in place.

I've said this a hundred times in this journal, but I think I'm a pretty logical guy and these results don't make sense. My blood counts are good, overall I feel good, I'm gaining weight and think I look good (not jaundiced, etc.), and I'm not in any pain. Logically it makes no sense to me how cancer could be progressing in my body if things are going so well. I really don't understand it. So I'll continue hoping that warning Dr. Jacob gave me about the US radiologist before I left Germany are true. I have nothing else to go on right now.

I stop chemo tomorrow and I have tons to do before we leave Sunday so I don't think I'll have much time to worry about these results right now. Wish I had better news to report, maybe I will in several days once I'm back in the mother country.

More updates to come...

Love,

Tony

Big week...

2009-01-11T21:52:00.006-05:00

This past week the old Tony returned. My energy level was much better, physically I felt close to normal (whatever normal is), I laughed much more and generally enjoyed life like I should. Although I am eleven days into my second round of chemo, I'm finally starting to feel more like myself.

Last week was a busy week at work and at home. I skipped my IVs at my naturopath due to my schedule at work and even though I was tired when I got home every night, I wasn't exhausted to the point where I needed to go straight to bed. May not sound like progress to some, but to me having some energy back has been huge. William celebrated his fourth birthday Wednesday and I was able to "be involved". I was able to help Crystal more around the house. I was able to work full days without wondering how I was going to make it to the end of the day. I was able to enjoy times with family and friends. I've had several good days since October, but never this many in a row, so maybe my 2009 resolution is working.

I big step towards that resolution takes place Tuesday this week. I have a PET scan Tuesday morning for a status check before my return to Germany next week. I've had numerous PET scans over the last four years and my anxiety level remains at an all time high during these tests. This one will be no different. The tests themselves are no big deal, waiting for the results is the hard part. Obviously hoping for positive news based on our discoveries in Germany, but also have been warned by my doctors in Germany that seemingly bad news from radiologist here in the States, may not be as bad as seen by the doctors in Germany. Apparently they have had some patients come from the US where US radiologist have not been familiar with some of the treatments being performed in Germany and measure certain markers as tumor growth when the tumors aren't really grown. Obviously I hope I get the news I'm wanting in the States so I don't have to worry about the results before I have the doctors in Germany read the scans, but we'll deal with the cards we are given this week and move forward accordingly. I'll be sure to give more frequent updates this week and while I'm in Germany. Honestly I don't know when I'll get the results this week, I'm not one to call and pester for them and if I don't hear from my doctor (which would surprise me) I wouldn't be one to call and ask. What matters to me now is what Dr. Vogl, Dr Friedrikson, and Dr. Jacob say about my test.

That's my big news for the week. This week should begin another adventure as my second round of chemo ends, my PET scan results are revealed, and we begin wrapping up loose ends before our trip to Germany. I know last time I started feeling worse when the chemo stopped, so we'll see if that occurs this time as well, but for now I'm going to continue to enjoy the good days. Good news is that I'll be in front of Dr. Jacob in a week so she'll have a chance to see any symptoms and I'm sure do her best to help prevent them.

More updates to come...

Love,

Tony

New Year's Resolution

2009-01-04T21:42:00.003-05:00

My number one goal for the past three New Years has been to end the year cancer free. There is no reason to stop that trend this year, so you could call “being cancer free” my New Years resolution for 2009. Even though it has only been four years it seems like I’ve been living with cancer forever. Unfortunately cancer is such a big part of my life it’s hard to imagine a life without it. I would do anything…anything…to be cancer free, so in order to adjust to a life without cancer I’m going to try to live 2009 like it’s already gone. Crazy, I know, but cancer in many ways is much tougher mentally than physically. Keeping ahead of the disease mentally is as important as keeping ahead of the disease physically. I took some time to reflect with Crystal over New Year's break and although I’m amazed at our progress, experiences and the odds we have overcome, the last few months have been mentally exhausting so I’m using 2009 as my fresh start to regain that feeling of hope.

I remember when I was Ashley’s age my biggest worry was missing recess or not having enough time to play with my friends. Middle school and high school brought worries of fitting in with my friends. College my biggest problem was going to class and studying. Then I hit the real world and saw how crazy my “problems” seemed in school since I now had bills to pay, a career to build, a wife and eventually kids to take care of. I didn’t think my problems could get any bigger. Now I look back at all of these “problems” and would give anything to have these as my main source of worry. I told Crystal Thursday on the eve of starting my second round of chemo how nice it would be to have a headache, the flu, a bad cold, body aches or pains, etc. all while being cancer free.

This is not a self pity party, I realize there are many people struggling with all kinds of different issues much more troubling them mine. I also can sympathize somewhat with people that are having “bad days” or “not feeling good”, everyone deserves and has the right to bad days as long as we don’t dwell on them. I just think my perspective over the last four years has changed so much that once this is over I will never see the world the same again.

I know the only way to live cancer free is start believing that I can be cancer free, so that becomes my focus in 2009. I also know my actions would not be the same if I had my same aches and pains, but knew I didn’t have cancer. Would I lie on the couch and be miserable if I had a pain in my abdomen knowing cancer had nothing to do with it? Not a chance. The new year for me brings renewed hope and my focus back into perspective. Without getting into details, I have had some good things happen over the past couple of weeks and still believe I am on the right path. My only choice is to believe in what I am doing and believe that my body has the ability to turn this thing around.

In two weeks we will be back in Germany. My aches and pains have not gone away and my second round of chemo is in progress, but my focus has changed. Here’s looking forward to another successful year with, I’m sure, quite a few more adventures.

More updates to come…

Love,

Tony

Not exactly the "perfect" holiday.

2008-12-28T21:19:00.005-05:00

As long as I can remember I've always had a sense of let down after Christmas. I'm sure that comes from the excitement and anticipation of the day that once over, brings you to realization that another Christmas has come and gone. I was really looking forward to this year more than ever. Ashley and William are at perfect ages to enjoy Santa and I was really focusing on enjoying the moments. I did my best, but my continued battle with my health didn't make it easy.
On Tuesday I woke up with a tremendous pain in my side. I thought (and I'm still not convinced) that I was experiencing some inflammation of my liver from the chemo. I sent an e-mail to Dr. Jacob telling her about the pain along with some of my other symptoms to make sure these were normal side effects from the chemo. She wrote back (immediately of course) that she thinks I'm having bowel inflammation and that would be more typical. When I went to my naturopath Tuesday she tended to agree and we drew blood to make sure all my liver counts were normal. As of today I don't have those results back, but Crystal did get a message from my naturopath over the holidays and she mentioned that my liver enzymes were normal. So as of now, I'm not exactly sure where the pain is coming from and why I'm getting it. I have to assume the chemo is the cause, but I never assume anything anymore. The only thing that seems to help is my extra strength ibuprofen. I take them when I need them, but would rather know the root cause versus "band-aiding" the pain with a pill. Dr. Jacob gave me some suggestions to combat the pain (which haven't helped all that much) so I am going to follow up with her tomorrow to let her know my status. I'm a tad worried that I'm still having pain and I'm four days away from starting my second chemo cycle.
The pain limited my Christmas spirit on the 24th at my dad's house. We had a nice visit and it was good to see my sister and her family, but I was not really myself that day. Thankfully, Christmas day was a little better, so I was able to get out of bed early to watch the kids open their presents from Santa and enjoy the day with Crystal's family. Overall the holiday was good, but at the same time I had higher hopes for myself.
Three weeks from today we will be in a plane heading back to Germany. I'm a little anxious about how I'm going to be feeling after round two of chemo and then going through another procedure with Dr. Vogl, but I will be happy to be in the presence of Dr. Jacob so she can help support me if I am symptomatic. Hoping to have some more answers as I progress through this week and bring 2008 to a close.
I hope everyone had a good holiday and enjoyed time with their family and friends while getting some time away from work.
More updates to come...
Love,

Tony

Winter segment one in the books...

2008-12-21T21:22:00.004-05:00

The roller coaster continues with me. As soon as I begin to get my energy back and start to feel better I seem to take a step or two back. Last week I was feeling good at the end of the week, had more energy than usual and was looking forward to carrying that over into the weekend and Christmas week. Crystal and I actually went out Friday night to a holiday progressive dinner party and even though I stayed up to late, we had a very good time. Fortunately we were able to sleep in on Saturday because dad kept Ashley and Will, but I never seemed to catch up on my sleep. As the day went on Saturday I begin to feel worse and today, although functional, was not a great day either. I'm definitely showing some signs of "chemo use" so my body may just be still dealing with the toxic aspects of the chemo. I know I'm killing cells, hopefully more cancer cells than healthy cells, so although I'm a little frustrated I realize this is part of the journey.

The frigid temperatures don't help. If I remember correctly I said I was going to take this winter in four three week segments. I believe we made it through the first segment, you can be sure that I'll be counting through the next three segments. I've mentioned it before, but I've never been good with cold weather. I was talking to a very good friend of mine last week who has also been through chemo and he said that he never was effected by cold weather until after his chemo. I'm not sure if there is any connection, but I am literally cold all the time. I wear two pair of socks, three or four shirts and usually keep my coat and hat on when I come home for about 30minutes. We keep our house at 70 so I know I should be comfortable, but for some reason I can't shake the cold. I promised I wouldn't complain so I hope I don't come across that way. Crystal finds my relationship with the weather comical...not so funny to me, but I'll keep bundling up and try to bite my tongue when I want to complain.

My naturopath has suggested combating my energy level with testosterone....enter joke here. Although Dr. Jacob in Germany said my tumors are not hormone dependent I still want to do some research before I jump on board. I think testosterone would help my energy level and probably give me increased strength, but I always worry about what my liver has to process so as always, will be doing my due diligence first. I guess next time you see me and my voice is lower, muscles bigger and fighting a bad case of acne you'll know what decision I made. I keep hoping that I will snap out of the my little funk for longer periods of time, but that hasn't happened yet so maybe a little hormone help may be beneficial. I get to make all the fun decisions...

We'll keep rolling. All of us are looking forward to this week. I'm trying to keep Crystal and the kids healthy for Christmas by loading them up with my wacky pills. Will never complains, but I have to push my girls every now and then. This will be a very busy week, so if I don't journal again this week I wish you all a very Merry Christmas. Enjoy the spirit of Christmas and have healthy, happy, and safe travels.

More updates to come...

Love,

Tony

Session 1 down..

2008-12-18T21:21:00.006-05:00

Watching the Colts struggle early against the Jags and have just flushed my last three chemo pills down my throat. Always a good feeling to know that I successfully made it through another "treatment" without major side effects. Seems like the only real side effect I had was my cold got better and overall I generally felt better. Obviously joking a little, there were some things, being tired the biggest, but overall I would have to say my body fared really well. Not to toot my own horn, but I'm always amazed at the strength of my body and how good it is to me.

I sent the e-mail to my doctor asking her several questions, one of those questions was in regards to that all important speeding ticket. I think I overloaded her with info because that was the only thing she did not address. I joke with Crystal that Dr. Jacob sends e-mails like Dr. Simoncini from Italy..short and to the point. I can write an e-mail that is a paragraph long (trying to be as succinct as possible) asking her several questions and she is able to answer with a sentence or two. I realize she is busy so I just appreciate her getting back with me. She is amazing at returning my messages within a few hours. Shows her commitment and care for her patients. I'll have to send a follow-up about my ticket...I'm not too worried about it.

The Colts are making it very difficult for me to concentrate so I'm going to cut this one short. Before I go I would like to ask everyone to keep the Jonas family in their prayers. Nancy Jonas died of a rare form of cancer several days ago. Another unfortunate story with this terrible disease. I wasn't personally close with Nancy, but have been following her story through several people. Her brother is my dad's very good friend (and mine too). She will be missed by many, I wish her family peace during this holiday season.

More updates to come...

Love,

Tony

Tired...

2008-12-14T10:55:00.008-05:00

I’m beginning to wonder if I’m the only one who can not speak German. After my entry earlier this week I have had numerous people call or send me a message willing to translate my German speeding ticket. Thanks to all of those out there willing to help (I may be calling on you soon for your services), I had no idea I had such an “international audience”. After I wrote my entry I decided to send the letter to my doctor and hopefully she will help me. I'm thinking that may be the easiest thing to do since I'm not sure even if I translate the letter how I would make the payment. I have not had a chance to send it to her yet, but will be doing so tomorrow. If that doesn’t work, I’ll be in touch with one of you to get your assistance.

Murphy's Law came into play after my last entry. As soon as I mention that I'm feeling well, the bottom fell out. I had a fairly rough day Wednesday, but started to pick up steam again Thursday through today. The chemo doesn't seem to have any major side effect other than completely wear me down, but I'm still working on this cold too so it's still hard to tell if it is really the chemo or the cold. There seems to be a direct correlation between how good I feel and the amount of sleep I get. I left work early on Wednesday, came home, went to bed, got up to eat and went back to bed. Thursday and Friday I went to bed early and that seemed to help. I've always been a night owl so going to bed early is an adjustment. Last night we had the Talking Time Holiday party so I slept in Saturday morning and caught a couple naps during the day so I could stay up past 9:00. Crystal and the kids probably have a secret bet on who sleeps more, daddy or the cat. Overall though the sleeping helps, my bodies chance to rest and heal, just not always the most productive way to live. I guess there's worse things that I could be going through, so I'll take tired as my side effect at the moment. Five more days of chemo then we will see if anything changes...maybe this two week old cold will be gone too.

Since I had so many people respond to my German translation need, I thought I would stay with the theme of asking for assistance and see what I get. I have two fraternity brothers that have a band, many of you may know them since they play in Indianapolis, Chicago, etc. They call themselves Mike and Joe (mikeandjoe.com), ironically also their names. They are not only talented musicians, but also great guys and offered to play one night early spring with proceeds going to my fundraising efforts.

They play at the Vogue and have connections with the Music Mill where they are working on some possibilities, but I'm looking for an alternate venue where they might be able to play. This isn't intended to be private event, I'm just putting out the feelers to see if anyone knows or owns a bar like establishment in the Indy area that would allow them to play on a Friday or Saturday night. I don't want to get into details in the journal...if you think you may be able to help let me know and I can get into those details. Can't hurt asking right?

Off to bed..

More updates to come...

Love,

Tony

My new cold medicine..

2008-12-09T21:43:00.006-05:00

Forget the ibuprofen and vitamin C, the best cure for a cold is chemo. Since starting chemo Friday, the cold that would not go away is finally tapering off. Strangely, this is the best I have felt since coming home from Germany. Maybe my body was just needing a good dose of toxins to kill off all the bacteria in my system to get me going again. I realize I am only five days into chemo and also realize that my cold may have run it’s course, nonetheless I’m happy to be feeling more like myself.

Although I wasn’t at full strength, we had a full day Saturday of really enjoyable Holiday firsts. Ashley had her first “public” dance program of the season at an event in Fishers. I manned the video camera so didn’t have time for emotions-- this may have been her first dance event where I didn’t get a tear in my eye. Her crazy practice schedule has paid off. I am by no means a good judge of dancing (if you have seen me dance you would know why), but I can tell how much she has improved since last year. Seeing my little girl out there with a giant grin on her face dancing her heart out is worth all the “headaches” that come with the crazy schedule. I’m so proud of how far she has come in such a short amount of time.

Luckily Santa was at the dance event, so we had the opportunity to see Santa for the first time this year. William elected not to look at Santa while speaking to him, so Santa had a difficult time understanding exactly what he wanted this year. The fifty kids waiting in line were none to pleased as they waited for the conversation between Will and Santa to conclude. The visit with Santa was official though so Santa has no excuses now for not knowing what to bring the kids this year—we have pictures to prove it. We also celebrated our first of several Christmas's of the season with the Laucks and Carnahans. I seem to complain about the hustle and bustle of the Holiday season, but at the end of the day I am realizing that the activities we have planned are the things I really enjoy the most. Spending time with family and friends while enjoying the moments are the most important things.

No new news regarding my incision. Dr. Crystal continues to pack my wound and tell me that everything is looking better. I was supposed to go back to the hospital this week, but I'll probably wait until next week to go back. I'm not sure they could tell me anything Crystal can't tell me already so I'll let this thing heal another week and go from there.

I did get a four page letter from the German government this week regarding my vehicular offense late October. The biggest problem with the letter is I can't read a word of it since it's written in German. If anyone reading this knows German I could use a translator. As far as I know I could be on Germany's most wanted list, but still assuming it's a minor traffic offense. Looks like I'll be spending some quality time with the English-German dictionary in the next several days.

That's all for now...more updates to come.

Love,

Tony