The start of our new plan...

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

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

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

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

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

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

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

More updates to come…

Love,

Tony

Getting some answers...

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

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

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

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

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

More updates to come…

Love,

Tony

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More updates to come...

Love,

Tony

Lessons learned...

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

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

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

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

More updates to come, from the mother country…

Love,

Tony

I'll need that second opinion...

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

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

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

More updates to come...

Love,

Tony

Big week...

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

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

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

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

More updates to come...

Love,

Tony

New Year's Resolution

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

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

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

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

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

More updates to come…

Love,

Tony

Not exactly the "perfect" holiday.

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