Stopped Counting Days...7+ Months Out

Been a while since I've updated here, and I haven't intended to go so long without an update. I guess watching Isaiah and making hospital visits during the summer has been enough to keep me from updating my blog. The biggest thing going on is that I had another PET scan last Friday and the results were stable to slightly improved again. The cancer remaining is described as minimal by the doctors, but I'm always eager to hear that there is no cancer at all. I'm not there yet, but things continue to go in the right direction.

While the cancer cells are disappearing, the new immune system continues to cause issues with GVHD. Since starting Prednisone at the beginning of the summer, I am doing much better. I have gained back the weight I lost when I couldn't swallow, and my appetite is pretty decent. My throat has slowly improved and doesn't bother me on most days. It isn't normal, but I can finish a meal in a reasonable amount of time and without pain now.

I continue to have ulcers in my mouth, but my sensitivity to different types of foods has improved. I joined a new clinical study for a topical thalidomide gel applied directly to the ulcers in my mouth. A lot of the doctors at NIH were eager to see how I did on the study, but the mouth pain didn't improve and I was taken off of the study after just a week. I had a bit of a flair up with the mouth pain after that week, but things have calmed since then.

I had a follow-up appointment with the opthamologist last week, and he saw no signs of the scar tissue he had seen the previous month. That was great news to hear. My skin rashes had been improving for the most part on the Prednisone, although last week I developed a new rash. On my forearms I started getting very irritated looking bumps. Over a few days the bumps increased in quantity and size. I had a small group of doctors including the dermatologist who has been following me stumped as to what it could be. On Wednesday I had a skin biopsy and a skin exam with the dermatologist, and he shared that it is probably just another presentation of GVHD. He said what it looks like I have now looks like hives, which is more rare for GVHD, but he can't find another way to explain it. Its a crappy experience to leave your doctors clueless, but this doesn't appear to be anything too serious. It itches more than the other rashes I've had, but it seems to be clearing up somewhat in my uninformed view.

So thats where I am medically. The cancer isn't quite gone and the GVHD is better but still bothersome at times. My energy level isn't what it was like before cancer, but its improving. I had a meeting at work today, and it will be exciting to get back to work in less than a month.

Returning to school means that summer is on its way out, which brings me to something going on this fall. The Leukemia & Lymphoma Society has an annual event called Light the Night. Its a fundraiser for their organization and I've decided to start a fundraising team that will participate in their walk in downtown DC the night of October 17th. It would be great if anybody would like to join my family for the walk and decided to fundraise on their own. Anybody who doesn't want to fundraise or walk could also make donations through one of my family members or I through the webpage for our team.

http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer

I'll keep people updated with the progress of the team's fundraising, and if there are any opportunities for people to get involved.

Day +181

Today is June 17th, which means I am six months out from the bone marrow transplant. I try to take things one day at a time in life, especially when thinking of the cancer. Therefore I didn't really have many expectations for what it would be like at this point when I was back in the hospital receiving the new cells. However, there were some things that I was hoping for. I haven't gotten the news that I'm free of the cancer yet, which is a bit disappointing, but I haven't received any negative news about the cancer either. I don't think I fully appreciated at the time how long this process would be. I was obviously hoping that I wouldn't have a big problem with GVHD, and I felt I was doing great for a few months. While I missed the acute GVHD right after the transplant, the chronic GVHD has been a recent pain in the butt. I don't know if I had any other goals, but one things I really wanted to do was to get back to work before the end of the school year. Today was the last day of work for the summer, and I thankfully put in about a month of work before the year ended.

So while I didn't quite know what this time would bring me, I have to say that things are pretty positive right now. Bad health is something that I feared before my cancer diagnosis, but I've realized that I can handle the physical problems pretty well. There were some times that I was truly exhausted, sick, or in pain, but these are things that I've been able to handle...especially with Isaiah and Kate helping me along the way. Missing so much work wasn't fun, but the biggest positive taken away from that was a lot of time spent with Isaiah and Kate. Family time, even under less than ideal circumstances, can be as good as it gets.

Moving on from the reminiscing, I celebrated six months with nothing less than a trip to NIH. I saw the dermatologist, who was happy with the progress since the prednisone began. I am also starting a new protocol that will involve some tests to help document what my GHVD symptoms are. For this study they took a couple of skin biopsies today. It was a pretty easy visit overall.

Tommorrow I will head back to NIH for a busy day. I'll meet with the transplant team in the morning for them to check on my progress. They will decide then how I will continue with the prednisone dosing. With the progress I am making they might decide to taper the dosage to every other day. After meeting with them I'll have a dental visit for another study that I'll be starting. This one involves a thalidomide gel to help with ulcers in my mouth. The prednisone has helped my mouth since I started it, but there is still room to improve. This might help out as well, or I could end up on a placebo. Either way it shouldn't hurt.

In the afternoon I will take part in a swallowing test which will give the doctors an idea about how my throat is affecting my ability to swallow. Supposedly this involved some eggs with some traceable isotope in it. Sounds delicious. Following that I'll have to inhale pentamidime, which is the prophylactic for preventing pneumonia. So tommorow will be another busy day, but it feels like business as usual. I'm still a regular around NIH at six months, but that was to be expected. Hopefully it is just the beginning of another successful six months on the long road of life.