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 +197

Having cancer has made it very easy to remember my haircuts. There haven't been many over the last two years, and today Kate gave me a trim with the clippers. My hair has been growing well, just not in all areas. The flaky, dry skin on my head hasn't been conducive to growing hair, and I've looked somewhat crazy lately. I had a balding pattern going on with long hairs that refused to do anything but stand straight up on my head. Now it is shorter, not quite bald, and hopefully it will start coming in a little better.

Over the last week it has felt good knowing the tumor has shrunk. I've been feeling pretty good with the prednisone as well until Tuesday night. My mouth became very sensitive to the texture of food, and I've had a flare up of the GVHD in my mouth. The last two days I've had new sores in my mouth, especially on the tongue. This makes eating and talking uncomfortable, which is especially a nuisance with Kate and I's anniversary today and the 4th of July tommorow. A nice dinner to celebrate four years would have been nice, but I think we will put that off until my mouth is ready to enjoy nice food.

Since the prednisone has been improving my symptoms pretty smoothly, the plan was to taper my dosage again. However, the flare up in the mouth led the doctor I saw today to keep me at the levels I am currently on. Its a little disappointing that I've had a bit of a setback with the symptoms, but this is all just part of what I have to deal with. Mouth pain aside, the rest of my symptoms haven't regressed and I am feeling pretty good overall. I'll make the best of this weekend, and I hope everybody else has a great Independence Day weekend as well!