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