Not much news....

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?

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

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...

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...

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....

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...

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...

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....

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

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...

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...

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...

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...

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!

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....

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....

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....

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.....

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....

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