Not exactly the "perfect" holiday.

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...

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..

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...

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..

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

A day I never thought I would see again...

I've been on a brief lay-off from the journal partly because I don't have much to update but also because my news right now isn't the most uplifting. I feel like since I have been home from Germany I have had my fair share of complaining and that's not what I want this forum to be for me. I appreciate everyone reading this and I definitely want to keep those interested updated, but don't want this to be a "downer" ever time its read.

Bottom line is this week hasn't been great (happy news, huh?). I'm functioning, but really just going through the motions. The cold I contracted last Saturday is still with me and although it has gotten better, my nose continues to be a faucet and I've entered the coughing phase. I seem to wake up each day ok, but as the day gets going I wear out easily. By three o'clock I'm ready for bed...but of course can't do that. I remain hopeful that I'll be better in a few days, but even a cold right now is a mental challenge. Crystal continues to tell me that people get colds and I'm trying to remember that and keep this in perspective. Still, I don't believe November 2008 will go down as a month to remember.

Chemo day started today. I really had no choice but to start today, even though I wanted to wait a few more days. The timing of my chemo and return trip to Germany are important so today was really the last day I could start. My chemo regiment is two weeks on and two weeks off, so the timing will work out where I won't be on chemo when I return to Germany. Since I will be receiving heavy directed treatment in Germany I really didn't want to be doing systemic chemo at the same time. My body I'm sure will thank me later, even if I have to pay for it now mixing the chemo with this cold. I take nine pills a day...six are already down the hatchet and so far no ill side effects. We are still a long way away from day 14, but I remain hopeful I'll stay functional during the two weeks on. Three months ago I'm not sure anyone could have convinced me to swallow a chemo pill, but Dr. Jacob obviously convinced me of the advantages. So here I am and honestly I didn't think this day would ever come. The mental challenge so far seems to be a little easier since the test results told me that this chemo is sensitive to my tumors. I at least feel like taking these pills can help. Before Germany I never got that feeling when going through chemo and wondered if I was torturing my body for nothing.

Good news today came from my blood draw earlier this week. Two of the three liver enzyme markers are back to normal and the third is really close to being within the normal range. I honestly can't remember the last time my liver enzymes have been normal, so I have to think something is going well. My white blood cell count is good, only my red blood cells and lymphocytes are low. I'm working on some things to help my red blood cells and hoping the low lymphocytes are due to this cold. I'll be tracking them closely the next few weeks. Overall, that was a little piece of good news I needed. I don't feel as good as my results show, but I'm glad the results don't reflect that.

The last physical physical piece of news is the incision. This too is getting better. Crystal said this morning that the swelling is nearly gone and the hole is now beginning to close. Changing the dressing is much less painful and my daily activities seem to be getting back to normal. I carried Will to bed last night without any issues so either my giant biceps took over, Will isn't gaining weight or the incision is better. If I had to choose from the three, I tend to think the incision is better.

My last bit of news this week came from my friends from Avis over in Germany. Unfortunately my love affair with the autobahn may have taken a hit this week. I was notified from Avis this week that I received a ticket on October 21st, 8:30 am. I remember this day for two reasons, 1) it's Ashley's birthday and 2) dad and I were driving to Frankfurt to see Dr. Vogl. I was never pulled over, but thinking that I must have been clocked by a camera or helicopter or something. There are parts of the autobahn that have a speed limit, but the news is still a little disheartening since no matter how fast I was going that day there always seemed to be someone on my rear. We'll see what happens when I get the correspondence from the German police, but I'm weighing my options.

My first thought was to not pay the ticket and buy some groucho marx glasses on my return trip as a disguise so I could not be detected. My other option would be fighting the ticket in court, but I'm not sure my extensive German vocabulary of water, please, thank you, and good morning would get me very far in the courtroom. Although it disappoints me, I'll probably end up paying for whatever I did, but still hoping that the notification from Avis is just a big misunderstanding. I'll keep everyone updated...I remember telling dad and Crystal I thought it was strange that I didn't see many police on the autobahn...I now think I know why.

More updates to come...

Love,

Tony

Old man winter has arrived...

At least Mother Nature waited until after Thanksgiving to give us snow. Every year when the thermometer dips in the low thirties and the snow begins to fall I wonder why I have lived in Indiana nearly all my life. Me and cold do not mix so I don't look forward to the next ninety plus days hoping I don't have to shovel snow or drive on ice, etc. Don't get me wrong, I like the season change but would enjoy it much more if I knew it would be over in a few weeks. Maybe I'll take this winter in four three week segments.

Winter also seems to bring nasty cold symptoms and unfortunately over the Thanksgiving holiday I contracted one and little Will is showing signs of a cold too. I worry so much about our kids during the winter so I have been pumping them full of supplements to help boost their immune system and I'm the one that gets the cold. Apparently taking about forty pills a day is not enough for my body to stay healthy, but I know my body is working hard right now with my incision and cancer so I'm sure my killer cells are spread pretty thin right now. I don't know how many times I have told people that I never get sick (which I rarely do), but I caught something over the break that has really slowed me down. I'll go see my naturopath tomorrow and have her listen to my lungs and give me something to help my body fight this.

Once again my plan was to start chemo today, but I really didn't want to add fuel to the fire right now. My new plan is to give this a day or two and start the chemo (sure is nice to be my own doctor :) ) My sore throat is getting better, but my nose is a faucet and I feel like I'm wearing a twenty pound weight on my chest. Hoping another two days will get me back into fighting shape so I can start the chemo. We'll see how I progress.

Dr. Crystal says my incision is getting better. Some of the swelling around the incision seems to be going down and although changing the dressing isn't an enjoyable experience, the process is much easier than it was a week ago. Worst part now is the tape burns on my skin. I don't want to sound like I'm complaining about this, my incision is tiny compared to what many have to deal with so bottom line is that I'm healing. I can almost sleep on my left side, so I know things are getting better.

On a much happier note, our Thanksgiving weekend was very pleasant. We had a good day on Thursday with Crystal's family and followed that up on Friday with another good day with my family. Saturday my cold began so we hunkered down at home just the four of us and started getting some Christmas decorations out (not up, but at least out). On Sunday we spent the day with some of our good friends, the Petruska's, Pruitt's, and Gamble's. Overall the weekend was much needed and one where Crystal and I really enjoyed each moment. I got to play cards two out of the four days which is one of my favorite things to do, so that helped too. Nothing bothered us, we just enjoyed the company of our family, friends, and each other. I hope everyone had the chance to do the same.

Now back to the grind and the hustle and bustle of the Holiday season. Seems like we have very few days where we don't have something scheduled and our weekends are completely booked. Not the way I like to operate, but this is the way it is every year for everyone, not just us, so I have learned to suck it up in the month of December. Never know, maybe I'll enjoy the craziness of the holiday season this year...

More updates in a couple of days.

Love,

Tony

Giving thanks...

Today went much like the past several days--relatively uneventful. I met with the wound team at the hospital hoping I would be patched up, but left as I arrived in the exact same condition. Either I'm a terrible listener or they never communicated to me what exactly I was going to be doing today. Basically they wanted to make sure the healing process was progressing and the infection was gone. They were satisfied on both, but said I could expect another 4-6 weeks before the wound completely heals. I'm obviously happy that the wound is healing, but not looking forward to the two a day packings Dr. Crystal will continue to perform over the next couple of weeks before I return for another check-up. I think I asked three times if the incision will really close and heal on its own and the answer yes remained the same every time. The body can do amazing things, I will find it fascinating to watch this hole in my gut close from the inside out and eventually close in the next few weeks.

After my appointment I went to my naturopath to get an IV and my injections. Today we did chelation, which is an IV that helps flush the heavy metals out of your body. This was significant because it was the first real chelation treatment I have ever had. Because of my pump we have not been able to do chelation therapy, something both my naturopath and Dr. Jacob in Germany were anxious for me to start as soon as I could. My naturopath, Dr. Teverbaugh, has wanted to do chelation from the day I saw her, but we have always had the pump standing in our way. Not now. The therapy made me a little tired, but there is no doubt it's needed based on my blood tests and all the chemo I have had over the past four years. Getting these heavy metals out of my system is one more step to getting my body to function effectively.

Now I'm home Thanksgiving Eve looking forward to the four day weekend and spending time with family and friends. Thanksgiving is by far my favorite holiday...nothing is better than spending time with family and friends, watching football and eating. Each Thanksgiving over the past few years has become more special to me because I really feel like each year I have a better understanding of what is really important and how many true blessings I really do have. It's not about the turkey or the shopping (now there are sales Thanksgiving day--which is really sad--only in America) or the football or how much "stuff"we own or the money in our bank account. Being on this earth with Crystal , Ashley and William and the rest of my family and friends is what is most important to me. I am thankful that I am able to continue to be part of people's lives and am so thankful for so many people allowing me to be a part of their lives. Not that I think this is my last, but I would be lying if I didn't wonder every time a holiday rolls around if this one could be my last. I live with cancer, but none of us know if this could be our last. Because of this I really try to enjoy the moment and the time off to reflect on how thankful I really am...for my health, my wife, kids, relatives and friends. At the end of the day all that matters is how those relationships enhanced my life. This year I am especially thankful for all the people that have been so supportive to us and have chosen to take interest in our journey. Crystal and I would not be doing as well as we are without all of you, I say this without a doubt and we will be forever thankful for the support. I hope all of you have a wonderful Thanksgiving and also have time to reflect on what is truly important to you too.

More updates to come.

Love,

Tony

Not much to report...

My lack of writing the past several days has mainly been due to not having much to report. Overall I seem to be feeling better each day. I'm slowly gaining back some energy and starting to feel more like myself. Staying up past 10:00 pm is no longer a problem...a week ago staying up past 9:00 pm was nearly impossible. I did struggle to stay awake for the Colts game Sunday night so I still have some work to do to get back in full form.
Dr. Crystal has been changing the dressing on my incision twice a day. She says the pocket seems to be getting better along with the swelling and redness (which have completely vanished). Taking the gauze out and putting new gauze in the pocket is not my favorite activity, but the pain has gotten better over the past several days and I now consider it tolerable. I go into the hospital tomorrow to have the wound team look at me to see what the next step is going to be. Crystal still believes they are going to need to stitch me up since there is still a fairly good size gap in my abdomen. I honestly have not seen it so can't really describe what I'm dealing with. Crystal took pictures one day in amazement and has shown some people (including me) which I find somewhat disturbing. As always I'm trying to be patient, but really just want them to stitch me up and let this thing heal so I can move on. We'll see what they say tomorrow and I'll keep everyone posted.
So believe it or not, that's all I have tonight. I'll write tomorrow after I return from the doctor, just wanted everyone to know that we are doing ok and have had a relatively uneventful week thus far. Looking forward to the long weekend this week.

More updates to come.

Love,

Tony

Wild, wild west and another fallen soldier

Yesterday reminded me of the old western movies when a cowboy would get wounded they would put a stick or rag in his mouth and a bottle of whisky in his hand. I actually thought of that while I was laying on a table while Dr. Maluccio opened up my incision and dug into my “pocket” to clean the area. I think I have said it before, but I believe I have a fairly strong tolerance for pain…let's just say I could have used a stick and a bottle.

Nonetheless I’m all cleaned up now and moving forward. Unless I want to take a chance of passing out, I choose not to look at my incision. Dr. Maluccio got the biggest kick out of me yesterday when she was cleaning me up. She’s telling me what she is doing (and of course I can feel it), I have my eyes closed trying to listen, but not really wanting to know even though I knew Dr. Crystal would need some of the information she was telling me. The room started spinning and I’m sure my face turned white. She stopped working and I squinted my eyes open and she asks if I’m going to pass out. I told her I was thinking about it. She thought that was pretty funny. I don’t think surgeons understand why people get squeamish because what they do is so matter of fact for them.

From what Dr. Maluccio and Dr. Crystal tell me the wound is now open and we are sticking gauze (damp with saline) down into the pocket and covering the incision. Dr. Crystal is changing the gauze twice a day hoping that the pocket will get smaller so by the time I return to see Dr. Maluccio next Tuesday we should be fairly healed. All seems a little crazy to me, but I’m doing what I’m told. Last night the dressing change was a tad painful, but this morning and tonight went much better. Dr. Crystal also said it looked better, so we must be doing something right.

From a good news perspective I received results from my blood draw on Tuesday and my liver enzyme counts are improving significantly as well as my white blood count. Still very tired, but I’m now attributing that to the stress my body has been through with the pump and it’s removal. I’m functioning a little better each day and remind myself that I’m also on quite a bit of medication that will make me tired, so I’m sure that doesn’t help either.

I e-mailed Dr. Jacob from Germany today to let her know about my blood results and at the same time wanted to let her know I didn’t start my chemo this week. I was supposed to begin Tuesday but couldn’t bring myself to start based on what has been occurring with my incision. I assumed waiting a week wouldn’t be the end of the world, but I’ll see what she says….I know timing for her was an important aspect. If she tells me to start, I’ll do it.

Seems like every few weeks now I’m ending one of my entries with more sad news. One of our friends we met in Germany died a couple of days ago. We met Eric and his wife Margo the first day we arrived in Germany and they left a couple of days later. Although we only spent a short amount of time with them we felt (and still do) a real closeness to them. Not only was there a common bond in the cancer fraternity we belonged to, but we shared the same cancer (Eric had colon cancer) and has two children about the same ages of Ashley and Will (his two girls are six and four). I’m not sure if it is a good analogy or not (and I by no means want to sound like I know what happens during a war), but I sometimes feel like I am in a battleground watching my fellow soldiers get taken down around me. Every time I see or hear about losing another “soldier” there is a very deep sadness in me. Eric was as positive of a person as you will ever meet and was a tremendous fighter. I know he would want us all to continue that fight and we will for ourselves and for him.

Margo called me today to talk to me about Eric and wanted to let me know that both she and Eric didn’t want his death to discourage me or any of the other people out in Germany. They both still believe in Dr. Jacob and her treatment one hundred percent. Unfortunately his liver couldn’t continue and stopped working. Margo said he knew what was happening and that he died in peace, without pain and really happy. He touched so many lives and was able to talk about death with his family and accept the fact that he and Margo and the kids were all going to be ok. I know that is true too, but not having his physical presence doesn’t make it easy. Of course hearing of his death was hard on me, but I really appreciated the call from Margo. She gave me a sense of peace with the situation that I am sure I would not have had without our conversation. Hearing from her now with what she is going through is a testament to the kind of people they are how much they care for their "family" out in Germany. Please keep Eric, Margo, Zoe and Ella in your prayers for me. Eric will be missed by many…I will miss him dearly.

More updates to come...

Love,

Tony

Calling Dr. Baker...

When I woke up today I had no idea what was in store. I've seen and done many things over the last four years and this one will probably go down in my top ten "unique" days.


Maybe it was IU basketball's victory on Saturday night (they won again tonight by the way) or the Colts win on Sunday or the sun shining or Crystal coming home Monday or my ranting on the journal or the pain killers, but whatever it was I seemed to be turning a corner. I would by no means consider myself 100%, but Sunday was a pretty good day and Monday went relatively well too. If you've been following along you can probably tell I've been fairly down lately, but I need to practice more of what I preach. I tell so many cancer survivors that it is ok to be down for a day or two, but then it is time to pick yourself up going full steam ahead. Easier said then done, I know, and will admit I've been guilty for the past two weeks...let's hope I can learn something from myself in the future.

Even though I have been feeling better, my incision area was looking worse. Dr. Crystal came home Monday and when she saw the site she was not very happy. She cleaned me up and made me promise her that I would call my surgeon first thing Tuesday morning. So that's how my day started today...8:30am on the phone with the IU Med Center trying to make an appointment with Dr. Maluccio.

What Crystal saw last night and what has been happening over the past couple days is increased swelling and redness around the incision along with a substantial amount of drainage. Obviously there was the concern of an infection which would be a concern and would also be something I would want treated right away. I waited until 10:00 to make a return phone call to Dr. Maluccio's nurse. She told me she had not heard from her yet and would call me as soon as she knew something.

I went to my naturopath to get my IVs and at the same time wanted her to see my incision to get her opinion. As soon as she saw it she told me it was infected and I needed to see my surgeon immediately. About this time (approx 2:00) my phone rang with news that was going to make that immediate visit difficult. The nurse told me that Dr. Maluccio was leaving for the day and would be gone the rest of the week. Then it got worse... Her nurse practitioner was also on vacation this week so I was given two spectacular options. One, go to your primary doctor (which I don't have nor would ever go to for something "major") or two, come into the ER. I asked for option three and she didn't have one. I gave her a couple option threes, I know several surgeons at IU Med, get me in with one of them or get me in with someone else on Dr. Maluccio's staff. Apparently they don't "share" patients at IU Med so seeing another surgeon was not something the nurse was willing to help me with. She did however create option three which was come in tomorrow to see a resident on Dr. Maluccio's staff. Not what I was really looking for, but I took it.

As soon as I got off the phone, my naturopath informed me that I could not wait until tomorrow to see someone. She was very concerned with what she saw and knew another 20 hours could increase my risk. I didn't argue with her and left her office looking forward to a long night in the ER. I've gotten quite a bit of practice in assertiveness when it comes to my health. When I got in my car I was angry. To me this was one more example of the american medical system's care. I was mad at Dr. Maluccio, because we have become so close lately and I was mad that I completely wasted an entire day waiting to get an appointment for an infected incision site and still had to go to the ER. I called my oncologist's nurse on the way home (approx 3:30) and told her the story. She told me she would call me back after she spoke with a few people.

Ashley got off the bus at 3:50 about the same time Crystal and Will came into the house. I wanted to say hi to them before I went to the ER, knowing I wouldn't see them until tomorrow morning. As I was gathering my stuff our phone rang. Crystal answered and I knew right away it was Dr. Maluccio. I picked up the phone and she asked me where I lived. Strange question I thought, but I told her. She wanted to know because she was in Fishers and said she would save me a trip to the ER and come to my house tonight. Suddenly I wasn't mad at her anymore.

She arrived about 6:00, first time I've seen her without her white coat. When she saw the site she pretty much confirmed what everyone else was saying. She wasn't convinced that there was a full blown infection, but didn't like the swelling (which was actually fluid in the pocket where the pump resided). I had a bag full of make shift supplies and she had me lay down on my kitchen floor and she went to work...literally.

So I'm lying down on my kitchen floor with a towel underneath me as Dr. Maluccio and Dr. Crystal hover over me. As she got started I'm not sure what was worse, the pain of Dr. Maluccio opening the incision and cleaning inside "the pocket", her pushing on the surgical site to force the fluid out, or seeing Crystal's jaw drop to the floor. As Dr. Maluccio continued her work Crystal proceeded to ask her why they don't allow people to watch surgeries anymore and that she is fascinated by some surgical procedures (apparently the one she was watching was peaking her interest). Let's just say I don't think dinner in our kitchen will ever be the same again.

Once she finished and began washing her hands, she gave me a sterile paper towel we had underneath our kitchen sink on a roll and told me to go take a shower and cover the incision with a bandage. She said she was going into the office tomorrow morning for a few hours and would see me at 9:00 to open up the incision, irrigate the pocket and help keep it drained. Something to look forward to tomorrow for sure...

As she walked out of our house almost an hour later (we did some talking) and after I thanked her, I told her I was going to start calling her Dr. Baker. She either didn't catch my humor, didn't think it was funny, or never saw Little House on the Prairie. I've said many nice things about Dr. Maluccio in the past and today she didn't let me down. I know few doctors or surgeons that would do what she did tonight for their patients. I'm blessed to have her on my team.

We'll see what happens tomorrow. As always, more updates to come.

Love,

Tony

Trying to snap out of it...

Two weeks have passed since my return from Germany and I must admit the transition has not gotten much easier. I'm trying to stay "up" but the physical pain has become mentally exhausting not to mention my love for Indiana weather. I think we have had rain for seven straight days now...nothing better to bring you out of a funk than cold, rainy, gray, and dreary weather. I'm working on my thank you to Mother Nature now.


I'm frustrated that I've been home with the family now for two weeks and pretty much work, eat, and sleep. Daddy is a joy to be around and that husband of the year award I was striving for is in serious jeopardy heading down the home stretch of 2008. The kids are resilient and I realize that as long as I'm around they are fine. Crystal continues to carry the load, I don't know what I would do without her. She actually went to Massachusetts this weekend to visit some of her friends so I guess I'm figuring it out. I'm so happy to hear that she is having a good time with many of her "old friends". No one deserves some time away more than Crystal, I was hoping she would have some fun and I believe that is happening. Ashley and Will have been big helpers for me this weekend doing the little things to make things easier on me. Besides not being able to put Ashley's hair in a ponytail this morning for dancing I've done a decent job of being Mr. Mom. I haven't been the most active dad, but we are eating and getting dressed so I consider that success. I know things will get better for me, but I'm a tad impatient and ready to get back to some normalcy.


Yesterday was a particularly tough day because cancer was the main theme of the day. I met a woman who has a three year old son that has leukemia and found out that my optometrist's wife was diagnosed with kidney cancer. My optometrist asks if I would talk to his wife, which I did. Even though I wasn't feeling great I put on my happy face and gave her my best pep talk as she sobbed in front of me. Everyone has to go through their own journey when facing cancer. I'm happy to talk to people, but try not to talk so much about my experiences (unless I'm asked) because I think everyone faces cancer differently and has their own opinions on how they want to be treated. I try to be a testament to people that you can survive this disease and keeping your mind out of the game is the most important aspect to winning.

So after a long day I get home and get an e-mail from one of the couples I was with in Germany. Things really weren't going great for them and they relayed that Eric, from Canada, was not doing well at all. Apparently he is to weak to even return to Germany. Unfortunately Eric has colon cancer too. Hearing this news along with the talks of the day and my physical pain pretty much sent me into breakdown mode. I want this so badly for myself, but want it so badly for others as well. Obviously any time I hear someone is not doing well it plants a seed in my mind that I have to later uproot and at the same time deeply saddens me. I continue to pray for all of those people out there that I know as well as those I don't know battling this horrific disease. I've written this a thousand times I'm sure, but we have to find a better way.

I'm sure I'll snap out of it soon, a day like Friday reminds me of how much our lives have been changed by cancer. I'm never to tired to fight this thing, but at the same time it does get tiring sometimes and I find myself really wanting that "normal" life again. Good things happen to those who wait, right?

More updates to come...hopefully something a little more upbeat.

Love,

Tony

Simple surgery...

Surgeons these days can do amazing things, but I would never call any surgical procedure "simple." Dr. Maluccio deemed my surgery today as a simple procedure but going into the OR today I still didn't know what to expect since she also believes resecting 50% of a liver is a relatively simple procedure. I know she is amazing at what she does and she proved just that today.

The surgery did turn out to be relatively simple. The prep time took longer than the actual procedure and there were no major issues. She did find some fluid around the pump which she sent to culture for bacteria, but from her experience and from what she saw she believes the cultures will come back negative. Dr. Maluccio believs the fluid may have come from the sodium bicarbonate I was doing in Italy (one of those pokes from Dr. Simoncini that "missed") and could be one of the reasons for some of the pain I was having. All of this created some tissue inflammation in the pocket where the pump resided and again, could have been a reason for some of the pain.

Regardless, I am home tonight feeling very tired and a little sore but actually have less pain than I did the past several days. We'll see how the night goes after some of the medication wears off, but for now I would call today a success.

Aside from the physical conditions, there is something very satisfying about having this pump removed. I asked the doctor how many of these she had removed, thinking the answer may be zero...but I was off by two. To be fair, one of the reasons for the low number is due to the hospital stopping the use of these pumps as a method for directed therapy but I also realize that most people who had these pumps are no longer with us. I know I beat the odds on this one and continue to prove that this can be done. I had a little smile on my face as I left the hospital today feeling like this was yet another step towards restoring my health and body back to where it was before this journey began.

I appreciate all the calls and e-mails today...I didn't get back to everyone, but got home around dinner time, ate, writing this, and going to bed. I continue to recognize that I can't do this alone and am blessed by the friends and family surrounding me.

More updates to come...

Love,

Tony

Tough week...

I've always said that cancer is as tough mentally as it is physically. This week was one of those weeks where I have been tested in both aspects. I left Germany one week ago feeling pretty good and since I have been home have been on a downward spiral. I look like I'm about three months pregnant from the inflammation in my liver which has caused a considerable amount of pain. The tough physical aspects have triggered tough mental conditions. Being away from that security in Germany creates questions in my mind about my current physical condition with no one here in the States to help. At the same time, the pain and discomfort are a constant reminder that I do have cancer and the fight I am in. This all may sound strange, but when you are feeling good and don't have any visible physical signs it's easy to "forget" about the battle. I guess the fear of all of this surfaces again more than anything so you find yourself constantly nursing yourself physically and emotionally.

I keep telling myself that the inflammation is normal and my liver has been through a tremendous amount of stress over the past several weeks. I'm disappointed that my first week home with Crystal and the kids has not been what I had hoped for--I haven't been much help to Crystal and I find myself sleeping and laying down most of the time when I am home. I haven't been as productive as I would have liked to be at work either. All of this together adds additional stress to the moment.

Ok- so enough of the sob story... I did talk to my surgeon Friday and she has pushed my surgery up to Monday morning to take my pump out. I was getting no where with her assistant and one e-mail to her got the surgery moved up two days. She is absolutely wonderful and I hope that when she sees my belly she doesn't change her mind about doing the surgery. I could use the extra room right now in my abdomen. The surgery is an outpatient procedure, should take an hour or so, but she will be putting me under full anesthesia. Not sure what to expect, but I feel like getting this pump taken out is the right thing to do right now.

After all my complaining, I did have some good moments this week with the family. I attended grandparents day at Ashley's school since Nana unexpectantly had to go to Florida. The program was short, but Ashley had a speaking part and needed someone there to support her. We went to a movie and dinner last night and although I have not been extremely mobile, have still been able to spend time with them at home. My body is still not fully on EST, but I'm slowly getting more accustomed to the time.

Should be another interesting week.

More updates to come.

Love,

Tony

Back into my routine..sort of.

The plan on Halloween was for me to be at one of my neighbors homes and surprise the kids when they came to the door trick or treating. Traffic was light and dad felt like he was still on the autobahn so we made it home sooner than anticipated. The kids were at home and standing at the door waiting for trick or treaters when they saw us pull in our driveway. There was a mad dash from me and the kids to get to that embrace. I have no words for having those little bodies in my arms again. Ashley and I teared up a little, but there was no time for emotion, we had Halloween to attend to along with the other 500 things they needed to tell and show me. Normally hearing "hey daddy" every 30 seconds would cause me to become irritated, but I loved every second of it that evening. Crystal and I got to catch up and walk around a little while the kids were gathering thier Halloween loot.

Being home has been a little weird. Although I wouldn't consider Germany a vacation, it is sort of that same feeling when you get back from a long break and have to get back into your daily routine. Plus I have not really felt good since I have been home so not having that sense of security each day with Dr. Jacob has not made the transition easy. I've been working every day, trying my best to get back into that routine, but I find that I am exhausted by the time I get home and poor Crystal continues to "carry the load." I know it will get better as each day passes, but can honestly say I'm looking forward to the weekend to rest.

We had Ashley's birthday party with the family last Saturday and after four weeks of no NFL football I got to watch games on Sunday. Crystal and I went to vote on Sunday at noon. I figured one, two hours max to vote so was ok with missing an hour of football if I had to. Three and a half hours later we left the voting booths and I had missed all the 1:00 games. Oh well...we had a beautiful day and Crystal and I really enjoyed the time together. There was plenty of NFL to see the rest of the day and there was nothing better than a Colts victory over the Patriots to finish off my Sunday.

The only other "news" is that my surgery to get my pump taken out is next Wednesday. I am going to see if I can get that date pushed up because the pain in that area of my abdomen seems to be getting worse each day. I think my liver is inflamed causing some pain in that area and the long flight and days sitting in the office have not helped. I've been in touch with Dr. Jacob and she has given me some suggestions, but I think getting this thing out is the best solution. We'll see if I get my wish earlier than Wednesday.

I want to thank everyone for all of the warm wishes and the "welcome backs." It's great to come back to so many people that care. I've said it before, but will say it again...we couldn't do all of this without the support we have received and we are forever grateful for being blessed with such a strong support group.

I'll continue to make updates...I'm of course exhausted and need to go to sleep.

Love,

Tony

Reminiscing...my "family" at Alpenpark

Twenty thousand feet in the air without any entertainment (the movie system is down in the plane) so I thought I should reflect on my trip to Germany while it is still fresh in my head. We don’t land for another six hours so hope this entry doesn’t turn into a book.

I must admit the trip far exceeded my expectations. From the moment we arrived to the moment we left; the organization, the care, the knowledge, the camaraderie in the Klinik was phenomenal. I’ve written quite a bit about the treatments, but not much about the other really important and healing aspect of the trip which was the people who came to be my “family” while at Alpenpark. I do not believe in chance meetings. If you bump into someone for an instant in a store or have a life long friend I believe those people are supposed to be part of your life. The people I met in Germany (I promised I would only use their first names), have become part of my life and whether we see each other again or not I was blessed to be a part of their lives and they will all hold a special place in my heart.

Over the past couple of years I have tried to find a piece of me in other people. Many of life’s lessons come from meeting other people and seeing reflections of you in them. Call me crazy, but I think you perceive yourself in what you think of others. I don’t claim to be a saint, but life and my perception of life has changed dramatically since my battle with cancer. My time is too limited to not find the good in people. When I look at people I try to see the attributes that I would like to, or do, see in myself.

The moment I walked into the IV room on that first day the room was full of people. All fifteen or so chairs were full except one next to a man who looked terrible. We didn’t talk much that day because Paol was in bad shape. He lives in England, had two small children, diagnosed with metastatic pancreatic cancer and has been told in the UK there is nothing more they could do. Paol wouldn’t and won’t accept that. Over three weeks I saw Paol go from not being able to walk, to walking two hours a day. His sense of humor, positive attitude, and love for his wife, kids and family poured through as his health was being restored. I wish Paol and his family nothing but the best as he continues his journey with his head held high.

We didn’t have much time to meet with Eric and Margo because they left a day after we arrived. But Eric was battling metastatic colon cancer just like me. He looked great and everyone had said he had really turned things around once he started coming to the Klinik.
They used the phrase that their “backs were against the wall” when they came to see Dr. Jacob, but feel like now they have stepped away from that wall and have a little breathing room. We hope to keep in touch with them, but they were the first couple that gave me hope in Dr. Jacob. Margo sat me down and said this is the place to be...you will know it before you leave. She was right.

Crystal and I went to Frankfurt for the first time with a couple, Jack and Diana. Diana has been battling a rare form of throat cancer for seven years (if you are reading this Diana I hope my facts are straight). She could write a book about what she has gone through in her battle with cancer. The surgeries and chemos she has been through actually make my jaw drop listening to them. She is a tremendous fighter with a determination second to none. Diana has ridden her battle for a long time and I know that no matter how long it takes; another year, 4 years, 7 years, 10 years, etc., she will continue to use her strength of determination to win the battle. As I do, so does Diana have a wonderful, loving partner. You can tell instantly the bond they hold and cherish for each other and how proud Jack is of her. They reminded me in some ways of my grandmother and grandfather Feller who you can still see today the love they have for each other. I don’t know if Jack purposely did it, but most days he would come into the IV room and pat me on the knee and ask “how are you doing today.” Those are the little things that really meant a lot to me while I was there…I don’t know if he realized how much that meant to me. The small personal touch and the little things sometimes are the things that stand out over a long day.

A few days into our trip Gary and Susan helped “show us the ropes” around the town, with the apartment, etc. They were like our little angels that helped guide us and get us off on the right foot. I was inspired by Gary while he was at the clinic. I’m butchering all of their diagnosis, but he had some form of throat cancer that has also gotten into his lungs. He did some brutal treatments in the US and came to Germany to hit his cancer with full force. Just like the others, his fight is incredible, but Gary was put through hell in Germany. What makes me so proud of him is that he wanted it (not to be put through hell, but to do anything he had to do beat this). He had doctors performing procedures that were dangerous (i.e. sticking a needle the size of a dagger into your lungs with no anesthesia while you mouth fills up with blood), painful (cyberkniving the tumors in his mouth that literally created a hole in his throat so he couldn’t eat), and mentally exhausting (chemos that gave him a rash and a constant reminder what he was going through). I know he had his tough days, but he battled through each day. Every day he would tell the doctor in so many words to “bring it on”. He has a prize fighter personality, someone that may take a punch and get knocked down but will stand right back up and punch you back twice as hard. I told him many times, you get news you don’t like go ahead and be upset for a day, but the next day you get up and fight twice as hard. He did that and I’m proud of what he accomplished in the five weeks in Germany.

Susan, Gary’s wife, left soon after Crystal but Gary’s brother Steve came for the final three weeks. Steve was constant encouragement for Gary and the entire room. Dad and I were lucky to spend a day with him in Salzburg and get to know him on a more personal level. He is a remarkable man, straight shooter and wants to know the logic behind the medicine. Dr. Jacob does really well with explaining things, but there can be some information overload trying to understand how everything coordinated together. Since many of us were doing similar treatments, Steve would sometimes give us some extra explanation on what and why some of the methods were being used. He’s also a pretty good cook too, cooking up a tasty steak dianne on our last night.

Michelle and George came a few days after Crystal and I arrived. George is Michelle’s brother and was there to support her through her battle with breast cancer. George kept the room laughing. I’ve never seen a man remember so many jokes in my life. He could go on for hours telling jokes and trying to make people laugh. Along with his humor he had a good heart and genially started to care for the other people there, not only his sister. I was a little more reserved (plus can’t remember a joke if you told it to me an hour ago), so I don’t think the room saw my full sense of humor. Nonetheless George’s fun loving spirit was evident…a man who likes to have a good time...and kept us all smiling on days when a smile would normally be a little harder to come by. Michelle is the caregiver. Although she is battling cancer she was always the one taking care of everyone else. We had to encourage her when it was her time for the needles to go in and had to encourage her to take her pills. Michelle if you are reading this…take your pills!! She has an unselfish part about her that needs to become more selfish to help her win this battle. Her caring attributes are her strengths…she really cared for the people in the room with her everyday and wanted so badly for everyone to be ok.

Teresa came late in my stay. She was diagnosed with breast cancer and had a couple of surgeries in the week that I was with her. She was hard core natural medicine, which I can appreciate since I was there at one time. I saw a little of me in her with her wanting to win this in a more natural, healthier way. Fortunately her disease seems to be stabilized so she will be able to continue her wishes, but for many of us there just going natural is not an option any longer.

Julie, Adam, Shellie, and Perry were all couples that had been coming to Dr. Jacob for years. Julie and Shellie both HAD breast cancer and both are in full remission. Both have had long roads to get there, but have proven that the methods used by Dr. Jacob work and they are living their lives with their children and husbands cancer free. I see the joy in their faces and the certainty of believe they have in the treatment that gives me a sense of warmth that they are living proof on what can happen. I’m not sure about the others in the room, but for me, having them around as proof that cancer can be beat was a powerful mental weapon for me.

These people helped shaped the last four weeks of my life. I hope I have Paol’s positive attitude, Eric’s sense of hope, Diana’s determination, Gary’s fight, Steve’s logical thinking, George’s fun loving spirit, Michelle’s care for others, Teresa’s belief in a more natural way, and Julie’s/Shellie’s faith and cancer fortune in me. I’m not giving any of them the justice they deserve in the short amount of writing I have dedicated to them, but the experience without them would have not been the same. I appreciate their willingness to share their experiences and allow me into a small piece of their lives. We all came from different countries and states, all have different personalities, different lives and careers, but at the end of the day we all want the same thing. To live another day. I will pray for each one of them daily as every one of them will hold a special place in my heart for as long as I live.

Tears filled my eyes as I hugged Dr. Jacob on that last day. There is a sense of security when you are around her and although I was more than ready to go home, there still are some feelings of vulnerability once you are gone. She asked why I was crying and I told her I wanted to thank her for what she has done for me and all the other cancer patients she has seen. I’m not sure she realizes what she does for all those that see her. She is an angel in disguise that has given us all renewed hope once again. The only regret I have on this trip is not knowing about this place four years ago. For some reason I wasn’t supposed to be here until now…I’m sure glad I came.

More updates in a few days…I need to get back to a normal life.

Love,

Tony

Leaving Day...

I only have a few minutes because we are wrapping up all the lose ends before we leave the clinic today. For those of you keeping track I wanted to let you know that I survived the vaccine with very little problems. I got the chills and a fever before I finished my IVs so Dr. Jacob gave me some medicine that literally knocked me out in a few minutes. I was able to sleep for a little over an hour, woke up, went to the apartment and slept for another hour, ate, and went to bed.

I woke up today feeling a little tired, but am not complaining. We packed and checked out of the apartment and are on our way to a hotel in Munich for the evening. Flight is at 6:30AM tomorrow...will be home soon.

Looking forward to seeing everyone back home again....the gang here has all left so today was very quiet.

Love,

Tony

Vaccination day...

Woke up early this morning thinking that maybe I shouldn’t be completely rested to start the day today. I receive my vaccination today which is supposed to give me a fever, chills, body aches, maybe nausea, etc. Dr. Jacob has been giving people sleeping pills to help people sleep through those side effects. I thought being a little tired might help aid the sleeping pills as well. The vaccination’s purpose is to help boost my immune system and help the fight against my tumors, but I also see it as my last major procedure for this go round in Germany. I feel like once I wake up Thursday morning I will have survived this trip with relative ease. As most of you know, that has not always been the case with me, so to get results and not have major side effects is really impressive to me.

Yesterday there was not much news. The weather turned sour here…really cold and rainy, so dad and I went to my IVs in the morning and sat around the apartment most of the day. We were able to go to Salzburg on Monday which was a good change. We went with another guy whose brother is here getting treatment. I think it was good for all of us to have some new conversation and scenery. Salzburg was nice, not what I expected, but nice. There are some beautiful places to see and plenty of shopping and cafes. We only spent the day there but I would describe Salzburg as a “little Rome.” The streets are all brick with shops and cafes everywhere. Not nearly the site seeing attractions as in Rome, but seemed like just as many shops. Unfortunately this is like my own personal hell since shopping is one of my least favorite things to do. I told Steve and dad that if I were to be in hell this would be it, just raise the temperature about 50 degrees to 110. Nonetheless, it is a place worth seeing if you are nearby and I am glad we went. I’m sure I’ll take Crystal there on one of our return trips…my hell is her heaven. We walked quite a bit in Salzburg so I proved to myself that I was gaining back some of my strength. I was very tired when we returned home, but felt really good yesterday when I woke up.

Right now I am just waiting…I’ve received my three vaccination shots and ready to go. Found out yesterday that the chemo I am going on in the States is not available in the US. I guess I shouldn’t be surprised. I’m not sure why the US does not use the drug and neither is my doctor here. The drug is relatively new (5 years) so I would assume the US hasn’t performed all their tests on it yet…who knows. I try to not get angry anymore about the incompetencies of the US medical industry.

Two days and counting. Thanks again to all of you for your support to me and my family during this journey.

More updates to come.

Love,

Tony

The three week mark...

Today marks the three week point in my first journey to Germany. The weeks go fast so I know the last four days of this trip will be gone before I know it. Dad has been here a week, like Crystal and Aunt Betty, hard to believe the week has come and gone.

I’m still moving a little slow, but overall can not complain. The inflammation in my abdomen is causing some soreness and I have what I call “the chemos”. Hard to describe the feeling, but you feel tired and a little tinglely. I am hoping that by the time I leave on Friday I will be feeling 90-100%. The IVs each day are helping my liver normalize and reduce inflammation so I am giving my body some help. Crystal had her 35th birthday yesterday, so between her birthday, Ashley’s birthday and our anniversary I need to be full strength for all the celebrations when I get home. Based on how things are going here I think celebrating this trip will be in order as well.

Dad and I haven’t really ventured out much so we are going to make a trip to Salzburg, Austria today. The trip is under two hours so getting an early start today so we can hopefully get out of the Klinik somewhere around noon. The way I see things, tomorrow will really be our last day “normal” day. Wednesday I get the vaccination which is supposed to give me flu like systems. Good news is the doctor plans to knock me out so Wednesday I’ll probably sleep most of the day. Thursday we will do IVs and go to Munich so we are close to the airport for our early flight Friday.

I give dad credit; he has been doing a good job with his German. We know enough to order food and get smiles from the Germans who I assume are happy we are trying to speak their language but find it humorous that we are butchering the language. Probably shouldn’t pat ourselves on the back to much though. We went to an authentic Bavarian restaurant last night and I thought I was getting grilled fish, but got some sort of grilled meat. Can’t tell you what kind of meat it was, I really didn’t want to know. They eat quite a bit of game over here so I find that not asking is the best way to go. Of course my food came with pretzels (the big kind you get at the ballpark) and potatoes. Not sure what the Germans would do if they didn’t have potatoes with a meal. I know potatoes will not be in my diet for a long time once I get home.

Not to somber the mood, but would ask all of you that are reading this to pray for the family of Gunner Gillespie. I have been following Gunner’s story for several months now and he passed away a few days ago. Gunner was eight years old little boy from Kentucky who had a rare form of brain cancer (DIPG). Although I never met him, he seemed like he had an incredible spirit and was so brave through his battle. Hearing about his death and having yet another victim of cancer deeply saddens me. We have got to figure this cancer thing out.

More updates to come….

Love,

Tony

Still making progress...

The chemoembolism treatment I had on Tuesday played havoc on my system so I've been slow going this week. Have not really felt good, but overall still able to function. I have no reason to complain though based on the results we have gotten.

Dr. Jacob believes we have made a 15-20% reduction in my tumor mass based on the MRI results from before my first chemoembolism treatment to the MRI before I had the second chemoembolism treatment. This is obviously good news, but the doctors also had some concerns about the tumors shrinking to quickly. I, of course, don't think we can get rid of these things fast enough but apparently I can produce toxins that would open up additional treatment needs if the masses decrease to fast. As of now, the doctors are happy with the progress and feel like we are on the right path.


I had another ultrasound today to see what differences we could see from the second chemoembolism treatment. More good news...continued narcosis and reduction in tumor masses. My liver continues to get smaller---we could actually see the entire right side of my liver on one screen (which we couldn't do three weeks ago). I am having some soreness near my hepatic artery pump, but Dr. Jacob believes the pain is coming from some tissue inflammation surrounding my pump. This is actually a good thing...shows more progress in the reduction of size in my liver.

I remember the first day I was lying on the ultrasound table looking at my tumors and hearing her version of what she calls my "potato field". I smile now on that table as she shows me the progress we have made. I've always felt like I can read people fairly well and over the past four years I have used that skill to read doctors as they give me news. Dr. Jacob is easy to read because she tells you the reality, good or bad, but nonetheless I could see the excitement in her face during the ultrasound today. She says this is very good news and very good progress especially after only three weeks of treatment. At the same time she reminded me that I still have many other treatments that I have not started yet (the vaccination, the antibodies, and the oral chemo) which she believes will only add to our success.

We also discussed my return date to Germany which looks like will be the end of January. She wants to put something on the calendar with Dr. Vogl. Sounds like the return trip would only last 7-10 days. Another chemoembolism treatment and some supportive IVs for my liver and lungs after the treatment. I also plan to get my hepatic artery pump taken out when I return to the States. No doctor in Italy or in Germany has liked this pump--it's been called stupid, shit, dumb, etc., etc--and Dr. Jacob has convinced me to take it out. I've talked to my surgeon already and she is willing to take it out when I get home. Dr. Jacob believes the metal in my body is hindering my progress. The procedure sounds fairly simple (my surgeon also thinks cutting out 25% of my liver is simple too), but I have to believe that it is because it will be an outpatient procedure. Something else to look forward to...actually will be nice not to see it or feel it...has always been a constant reminder for me of what I am dealing with. The scar will become a battle wound and a reminder of how far I've come.

Emotionally this has been a very good three weeks. I know I still have a long way to go, but for the first time in a long time I feel like we are on the right path. Prayers, love, support, hope, and faith are all key ingredients to fighting cancer. I've gotten a large dose of hope here in Germany.

More updates to come...

Love,

Tony

A little down today...

I'm going to keep this one short today because I'm not feeling that great today. The steroids are wearing off from the chemoembolism treatment I had on Tuesday so my body is struggling a little. I finished my IVs for the day and feeling a little better, but this is by far the worst I have felt since I have been here. I think all of this is expected so no worries, just need to get through the next couple of days and then I will be ok.

To make matters worse I received news today that I need to stay here longer. The hardest part about being here is being away from Crystal and the kids. They are my life line and play a big part in my healing process. I came here for a reason though and I will stay as long as necessary to complete the treatments I need.

I was supposed to get my vaccination today and leave Monday, but the monocytes (which I mentioned in a previous journal entry) in my blood were so low. The good news is after we drew blood on Monday we had enough monocytes to create the vaccine. The bad news is they need to culture for several days before they can make the vaccine. So we are now scheduled to get the vaccine on Wednesday. She wanted me to stay Thursday for observation and I will fly home with dad on Friday, Oct. 31st. I was counting the days and was down to four until today. Back up to eight now, which is discouraging, but not the end of the world. Based on the way I am feeling today I'm not sure I could have gotten my vaccine anyway.

I will update everyone later on the progress. The news I continue to recieve is positive so obviously my spirits remain positive.

More updates to come.

Love,

Tony

Changing of the guards and another trip to Frankfurt

The past two days have been extremely busy, so busy I have not had time to journal which is usually one of my higher priorities. I know there are so many people “rooting” for me back home so my way of giving right now is to keep everyone updated. Crystal and I receive messages daily from people as well as keep up with the “Guestbook” entries. I want to thank all of you who write, pray, and continue to keep us in your thoughts. I have always said and will continue to say that cancer patients can not win their battles alone—I am convinced the support I have received over the past four years has helped get me where I am today.

Dad arrived Monday to the welcoming party of no one. Betty and I ran into traffic and his plane arrived early so he was at the airport for about 30 minutes before we arrived. I felt badly about it, but put him to work renewing our rental car before we arrived. He didn’t think he was tired, but after the drive home, my IVs, a trip to the grocery, a walk around the lake, and some ice cream we headed back to the apartment and he was out in less than a minute. He woke up for a movie after I went out for something to eat and we went to bed around 10:30.

Tuesday was an early morning and another long day in Frankfurt. We had a car so decided to skip the expensive cab ride and make the trek ourselves. The roads here are very similar to the US, except everyone goes very fast (and it’s legal!!). I was in heaven driving on the autobahn at average speeds of 145 km/hour (90 mph) with a top speed of 200 km/hr (125 mph). I would like to thank whoever invented the autobahn—what fun. We would have them piling up like pancakes if we every tried something similar on I-70 or 465. Everyone here are very good drivers, trucks stay in the right lane and if you are in the left lane you better be passing. No matter how fast you are going someone is always going faster and they get on top of you in a hurry. I would also like to thank whoever invented the GPS systems because we went straight to the hospital, but I am certain we would have never found where we needed to be without the GPS. The city streets of Frankfurt are a tad confusing.

We saw Dr. Vogl on time and he did his thing…let’s say his efficiency was well above average yesterday. We all joke here that he does not allow much time for the anesthesia to work. He actually walked out of the room for a moment after he gave me my injection. I was happy that I would have a fighting chance to get the anesthesia to work but I was a little worried when the room began to spin and I was alone with no one around. He came back in took out his scalpel and made the incision. This is about the time he asks you if you can feel anything (which of course is to late). I told him “besides the incision he just made and the blood running down my leg I don’t feel a thing”. He knew I was kidding (even though I was only half joking), he has a good sense of humor. I’ve made it a general rule to try to keep things light in an operating room in hopes they will take better care of me. As I mentioned before, the procedure went quickly with no problems and we were off to recovery within minutes.

The good news continued from Frankfurt as my scan results came back positive. Dr. Vogl’s exact words were the tumors are smaller and less aggressive in both my liver and my lungs from the previous scan. He, liked Dr. Jacob, seemed pleased with the progress. I didn’t have a radiologist report (hoping to get that in the next day or two), so I asked him in his opinion if the progress small, medium, or large. He said he would classify it as medium. Regardless of knowing the exact scan results I feel like we are on the right track and making progress. I asked him if I needed to come back before February and he didn’t think so, but didn’t want to confirm that until we continued to monitor my progress.


We got home last night a little past 11:00 pm. Dad was initiated on the autobahn with darkness, rain, construction, and some misunderstood road signs so his drive home was not as fun. Nonetheless we made the trip home without any snags, just took us a little longer. We were in no hurry and happy from the news so enjoyed the ride as much as possible. I went to bed soon after we got home, dad stayed up a little longer. The wild ride home, plus the time difference he’s still not adjusted to kept him up a little longer.

I slept last night with a little bigger smile than usual on my face. We’ll see what Dr. Jacob has to say today.

More updates to come.

Love,

Tony

Another NFL Sunday...

I must admit besides being with Crystal, Ashley, William (and Sampson, our cat), I really do miss my couch and NFL Sundays. It is close to 1:00pm here and would be nice to have my feet up watching a couple of good games. Instead I have my feet up doing a few IVs, another day as usual.

Aunt Betty leaves tomorrow. I'm a broken record I know, but seems like she just got here. We were able to do a few things; enjoyed many different restaurants (some good, some not so good), got lost in the mountains of Austria trying to find a little town, saw a church in a nearby Bavarian town where apparently some miracles were performed, and took a walk around the lake here in Bad Wiesse. My treatments take up most of the day, but we were able to get out enough to get some activity. I am grateful she came out, but I told her today that as disappointed as I am to see her go it does mark another week closer for me to get home and for that I am happy.

Status quo on treatment today. More of the same with a little added immune boosters for my blood draw tomorrow. Dr. Jacob gave us a good education today on stem cells and the vaccination she is giving us. I get more excited as each day passes with her treatment here. She is saddened by the laws that govern the United States as well. She is very open about how long some of her treatments have been around (some 15 years), but not yet approved in the US. Makes no sense to me.

Big news today is that she wants my hepatic artery pump out. She is worried about the heavy metals in my body and knows my pump is not helping. She does not want to be doing treatment that may not be effective due to the pump. She has other concerns as well, but wanted me to look into having it removed. I have e-mailed my surgeon at home to see what she says. Dr. Jacob is going to wait three weeks to put me on chemo so she said the timing would be right to get this out as soon as I got home. I want to see how major of a procedure it is and what to expect before I make that decision, but right now I have a difficult time not following the request of Dr. Jacob.

Weather remains nice...a bit chilly, but the sun continues to shine. This place is beautiful. Miss being home tremendously...would love to watch a NFL game today. Soon, I know.

More updates to come.

Love,

Tony

Schedule for next week...

All continues to go smoothly here in Germany. This has probably been the smoothest ride I have been on in some time. I'm not waiting for something to go wrong, I'm very happy that we are (knock on wood) not having any issues and hopeful that will continue.

Next week we have some more "tough" procedures. On Tuesday I go see Prf. Vogl again in Frankfurt to have another chemoembolism treatment. Since this will be the second go round, Dr. Jacob says I may have a little more difficult time tolerating the procedure (ie. more tired, run down). On Thursday I receive my vaccination that is being made from my blood. I was going to get it this week, but they could not pull enough monocytes from my blood. Monday we will take more blood and hope with two blood draws we can get enough. The monocyte is one of the killer agents in your white blood cells. I am baffled why my immune system is so low based on what I have been doing over the past year. Dr. Jacob says what I have done is ok, but my immune system is so very compromised based on the number of years my body has been fighting this disease that it does not surprise her. She is giving me thymus injections and chlorella IVs to help boost the monocyte production in my body.

The vaccine is supposed to cause a fever and chills. She actually wants you to get this reaction to help stimulate your immune system. Two of the patients had the vaccination last night and had fairly rough nights. They have recommended that I stay in the Klinik the night of my vaccine based on what they went through. I told Dr. Jacob I feel badly that I feel so good while so many people around me aren't doing so well. She told me she would make me suffer next week (partly joking of course--but we'll see).

Still on schedule to leave on the 27th. Dr. Jacob said depending on the results of the procedure next week I could probably expect to come back here in February for a week or two. She will start my chemo in the States three weeks after I get home and those results will help make future decisions as well.

Aunt Betty and I went for a long walk yesterday around the lake. The weather is getting colder, so it's becoming more difficult to be outside. The days continue to go fast though.

More updates to come...

Love,

Tony

More test results and a 10 year Anniversary.

I can not believe Friday is here again. When Crystal was here we were amazed at how quickly the time past even though we really didn’t have many “activities” to show for it. The same has been true this week with Aunt Betty. Seems like she just got here but she will be leaving in only a few days.

The biggest news of the day today is that Crystal and I are celebrating our 10th Anniversary. What a way to spend it…thousands of miles apart. The day is a reminder of how important she is to me and how lucky I have been the past ten years to partner with such an extraordinary women. I would rather be home to celebrate with her, but I am here so we can continue celebrating this day for years to come.

My chemosensitivity test came back two days ago, but it has taken me a couple of days to understand the results in order to publish them. A simple blood test cultured by a geneticist is all they use to see what antibodys, natural medications and chemos your tumors are sensitive to (which is good) or insensitive to. I am appalled that the States does not use this test and find it near criminal in my mind. The test gives you so much information and helps pinpoint what medications work best for someone. This information would alleviate putting cancer patients through the pains and sickness of chemos that may not be sensitive to their tumors. I don’t understand why we don’t have it in the States—and after seeing the results I’m angered by what I and so many cancer patients go through because this is not a test in the US “cancer box.”

There are chemosensitivity tests in the States, but they take a biopsy of your tumor. This not only is invasive, but only gives you a small picture of what is going on. A tumor mass can have different properties in different areas, so getting a small slice of a tumor will only tell you the story for that particular piece. The test here in Germany comes from the blood and gets your “cancer story” from both active and non active cancer cells travelling through your body. Amazing---this test alone was worth the trip to Germany.

There was some good news on my test and some bad news, but I think overall the test was much more positive than the doctor anticipated. My perception is that she thought the results would be much worse. Bad news is only 30% of my tumors are sensitive (which is good) to chemotherapy. That means the other 70% we will need to tackle through antibodys and embryonic cells. We found that I was insensitive to all of the chemos I have been offered at home (not that I was not sensitive to them at one time, but my body has now become resistant to them). The decision to stop chemo several months ago was a great decision because it would not have helped. There were four chemos that I was sensitive to...three are in the colon cancer family of drugs and one is an old lymphoma drug. The three colon cancer drugs I have never heard of, but Dr. Jacob says they use them for colon cancer. The really good news is that Dr. Jacob guessed correctly on two of the chemos. She had Dr. Vogl use two of the chemos in his chemoembolism treatment last week in my lungs along with the antibody, Avastin. She is now even more confident that we have made progress in my lungs like we did in my liver.

We are not going to start chemo until I get home. She says she doesn’t want to throw too much at me at once---basically my body may not be able to handle all of it. I have found that timing is very important with her, so I will start when she wants me to start. The chemo at home will most likely be in pill form in much lower doses than before. She doesn’t believe my side effects will be bad, if at all…and the best news…we know my tumors will be sensitive to it. I don’t mind going through a little suffering if I know the drugs have the potential to work. Of course she will be supporting my body through natural medications at the same time because she absolutely does not want to compromise my immune system.

The other piece of the puzzle was the antibodys. She was very concerned that I would be resistant to antibodys, which would have made this a little more difficult. The best news of the test is that I have sensitivity to the antibody thalidomide. This is an old drug (1950-1960s??) that was used to help women with nausea when they were pregnant. They have sinced stopped the use of this drug because they soon found out that these pregnant women were having babies with deformities. I could write the history here, but I’ll spare everyone the details for now---the connection though is obvious with what we know now about embryonic cells. So…30-40% of my cancer cells will respond to antibodys, in particular thalidomide. This drug will go to the cancer in my body, “mark it”, which will cause inflammation in the body. My body’s immune system will recognize the inflammation as something that needs to be destroyed and will go kill it. So along with these antibodys, having my immune system working well is just as important. That is where the natural drugs, the vaccines and photopherosis I am doing come into play.

The last piece and probably the worst news on the test is that 35% of my cells are resistant to chemo or antibodys. There are no medications I can take that will kill these cells. Good news is we have the embryonic cells that can kill these cells. Again, I will spare you the details ( I think I put some in an earlier blog). These proteins are injected into your body and will again, “mark” the cancer cells resistant to antibodys and chemo and kill them. I had my injection yesterday and confident my little guys are working hard right now to do their thing!

As I mentioned, there are also a slew of natural drugs that were on the test that revealed some sensitivity to my cancer cells. We are using some of them here and will continue to do so when I return. I am currently getting artesunate injections which is a natural drug previously used for malaria. I’m on selenium and will be taking quercetin when I get home. There are many other natural drugs that I have some sensitivity to that I have been taking for the last year, so that is probably why I have had some success holding my disease at bay.

The conclusion is obvious and one Dr. Jacob told me before I got here. I need to be doing many things in combination to combat my disease. Doing chemo alone or natural medicine alone is not effective because it only works on a small percentage of the disease. Doing everything in combination is the only way.

If you can’t read the excitement in my voice it is there. Each day I believe more and more in what we are doing here. I am a very logical thinking man and all of this is very logical and makes complete sense. I told aunt Betty last night that I regret not finding this place a few years ago. If I didn’t have cancer, but was diagnosed today, this is the first place I would be. The less your cancer sees (from chemo,etc.), the better chance this treatment can work because the options should be nearly unlimited.

For now I remain hopeful and excited that I am once again on the right path. I appreciate all of your support…I’m really looking forward to getting home soon. Can’t wait to give my kids a hug and tell them with more confidence that “daddy is going to be ok.”

More updates to come…

Love,

Tony

On the right track…(Day 9 in Germany)

I slept great Monday night, one of the best nights of sleep since I have been here. I think because Crystal and I were always getting up every morning “alarmless” I was always afraid I would oversleep. I knew we didn’t have to get up Tuesday morning since we were not on a tight schedule--so we slept. Aunt Betty needed to catch up on her sleep and I needed some extra sleep as well.

Because we slept in we didn’t get to the Klinik until around 11:00am and didn’t leave until 3:30pm. I got my IVs as usual and spoke with Dr. Jacob. She was very pleased with how I was feeling, especially how my body tolerated Dr. Vogls treatment last week in Frankfurt. The plan in her mind has not changed. I will get the embryonic cells on Thursday, start my vaccinations next week and have a repeat trip to Dr. Vogl again next week before I go home. I knew my stay here could go past 3 weeks, but she doesn’t think at this point that I will need to stay longer. I will need to come back at some point, but we will figure out when and how long before I leave. Much of that decision will be based on how much I can do at home and how well things are going here.

Dr. Jacob had my follow up ultrasound today. We had our baseline ultrasound last week, but she wanted another one today to see what kind progress we have made. As we talked she seemed confident that I would see a reduction in my tumor sizes—narcosis and dead tissue. I wanted to believe her, but at the same time I’ve learned to be fairly guarded about these things. As much as I want good news and as positive as I remain, I also find myself skeptical at times, especially with results this quick. I use the word “guarded” quite a bit because I want the positive news, but have expected it before and have gotten not so good news.

We had the ultrasound and she was right. I haven’t had tears of joy for awhile, but the ultrasound brought them out. Dr. Jacob was very happy and saw measurable progress. She is going to give me some measurements tomorrow, but from what she saw it seems to be significant progress. I could see the tumors clearly last Monday as soon as she started the ultrasound; today we had a little more trouble spotting them. Not that they are that small, but I think was fairly surprised last week in the size of them on the ultrasound.

Of course I am thrilled to finally get a taste of good news, especially after one week of treatment. I know an ultrasound is not as precise and accurate as a CT or MRI, but there seems to be enough evidence of good news to be happy. We won’t know how the lungs are doing until next week, but Dr. Jacob also seemed confident that we should be having a positive effect there as well. I immediately called Crystal and made her cry. Even though she’s not here, it was great to finally share some news we have been longing to hear for awhile.

In a previous entry I talked about being asked a question about how sure I was about this place. Everyone here is really sold on what is going on and I apparently seemed to exude the perception that I was on the fence. When you begin seeing positive results it becomes very difficult to not believe more and more the things that are going on here. I obviously remain guarded (there’s that word again)—we have a long way to go, but seems for now that we are on the right track. Today was a good day.

More updates to come.

Love,

Tony