Radio-Telethon here I come

I am trying to decide what to wear to my checkup tomorrow at Dana-Farber.

The satorial question tonight is of greater concern than how my counts will be, although as usual, when I go into Dana-Farber tomorrow, my test results will be on my mind, and I will feel those familiar nerves while waiting for them.

Tomorrow's visit will be different than the others because I will be filmed by NESN (New England Sports Network), checking in and greeting Dr. Alyea. It's all part of my upcoming participation in the WEEI/NESN Jimmy Fund Radio-Telethon, in which Dana-Farber patients, parents, doctors, researchers, athletes and celebrities speak about what Dana-Farber has meant to them. It will air Aug. 21-22.

They were looking for a long-term survivor, and Saul Wisnia, my editor/friend at Dana-Farber, thought of me. NESN also plans to come to my house to interview me and film me running. Don't know when that will be.

It's exciting and a little bit scary. Ben, Joe and Katie will come with me in August because they invite family members to participate. We'll see a Red Sox game and schmooze with some players.

I have to be in Boston at 10:30 tomorrow for my blood draw. Also I am getting up early to see the rain-delayed men's final at the French Open, which begins at 7 a.m. and hopefully will finish by 8:30 when I need to leave.

I had thought of DVR-ing it, but Joe told me that such a thing is just not done for sports. Plus if I watch it live, I can discuss it with Dr. Alyea.

Percocet chronicles, tongue update

As I sit here at the kitchen table, I just fell asleep with a bite of coffee cake in my mouth and my fork in my hand. It's because I took 10 mg. of percocet this morning; without it, my tongue hurts so much that I can't eat or even hardly think. It makes me loopy, so I hope this makes sense.

I had to choose between lying down and forging ahead with my plan to write. I made more coffee and decided to write.

I didn't want to take percocet near bed-time last night because the other night I had hallucinations that large objects were coming at me from all directions. I even thought that large objects were filling my room and crowding me on the bed.

I tried two Tylenol alone at bed the other night, but that didn't take the edge off the pain, and I couldn't sleep that way either. Last night I took 10 mg. of percocet a couple of hours before bed and followed with half an Ativan, hoping it would undercut the weirdness of the percocet. It worked. Oh, and I also took a Benadryl to try to stop the itching from my rash. More on the rash in a minute. (Bet you can't wait!) Anyway, I got pretty zonked out.

On Monday, Joe drove me to Dana-Farber so I could see Dr. Goguen, who did my tongue surgery, and so I could get bloodwork and check in with Melissa.

Dr. Goguen said my tongue looks the way it should and said the biopsy report was good. She had removed more than she had expected because of a large area with severe dysplasia. She got clean margins but left a little spot of mild dysplasia in order to avoid digging deeper. Apparently mild dysplasia is unlikely to do any harm.

The pain could persist for a couple of weeks. I guess the tongue is a particularly sensitive area.

I had gotten bloodwork before that appointment, so when I went down to see Melissa, she had my counts. They were fine for me: platelets, 74; white blood count, 9.6;  hemoglobin, 10.2, and hematocrit, 29.8. I did wonder why my hematocrit (and hemoglobin) had dropped; the last few times it was in the low 30s and close to normal, which is 34.8-43.6. (For hemoglobin normal is 11.9-15.0.)

She said it really wasn't a significant drop, but she would double-check with Dr. Alyea if I wanted. My liver is stable, but she said it wasn't a good time to lower the prednisone. She promised to check with Dr. Alyea on that also.

So, back to the rash. My torso and face have an interesting collection of spots and blotches; discreet red spots on my face, the splotches of red on my arms from the prednisone, now joined by smaller dots; a genuine rash on my stomach and something around my ankles. Definitely not beauty-pageant material, although possibly interesting to a pointillist exploring use of different kinds of dots.

When I first noticed the new tiny spots a couple of days ago, I panicked and thought they were petechiae, a possible sign of low platelets. I thought I needed a transfusion. Petechiae are a trigger for me, a sign of all things going downhill. My mind did its crazy doom and gloom thing.

I called Dr. Alyea and he said it wouldn't hurt to get a blood test and meet with Melissa. (We talked on Sunday, the day before my appointment with Dr. Goguen.) I asked if we should plan in a possible transfusion, and he said he doubted that would be needed.

Then we talked about the Federer-Djokovic match at the French Open, which took my mind off everything as I watched it on the couch Friday. Federer won the semi-final 7-6, 6-3, 3-6, 7-6, but lost in the finals Sunday to Rafael Nadal, 7-5, 7-6, 5-7, 6-1. I watched that one too.

The more I studied my dots, the more I realized that they were all part of a rash. I was delighted when I discovered that they itched (not a quality of petechiae). Now the itching is getting old.

Dr. Goguen took me off the antibiotic, clindamycin, although it does not usually cause rashes. It might be the percocet, but I'd rather itch than ache. It will probably end up being one of those "rashes with unknown origin." As for my face, which has a different kind of larger red dot that does not itch, I will probably schlepp back into Boston to see my dermatologist, Dr. Linn.

Well, I have to go now and take more percocet. Maybe a Benadryl is in order too.

Friday morning tennis hits the spot

For as long as I can remember, weather and health permitting, Friday morning has been tennis morning. That usually means playing at 7:30 or 8 a.m., quickly showering and then dashing into work, hair still damp and mind still on the last point.

When you've had three bone marrow transplants and spent weeks in the hospital and months recovering, for a long time tennis is just a memory or something to watch on TV. Until, at last, you come back. I've had two successful comebacks and am now trying for my third.

Yesterday at my clinic visit (day 86) my hematocrit was up to 28, from 26 at my last visit 10 days earlier. I got my second shot of Aranesp , a drug used to treat anemia after chemotherapy. It's interesting that now I think of 28 as "up." Days before I was first diagnosed in 2003, I ran an entire 10-K road race with my hematocrit "down" to 28. I guess my conditioning was better back then.

This morning, as I headed out to play tennis with my friend Ken from work, I had that old Friday feeling. We just hit for a while, and then I proposed playing a set just to see what happened.

"Don't baby me," I said.

He didn't exactly baby me, but let's just say that although I won 6-4, it wasn't exactly fair and square. For starters, he said that due to a shoulder injury, he would serve underhand, so I should remember to stand closer up.

We talked for a minute about Michael Chang's surprise fifth-set use of an underhand serve in his comeback win against Ivan Lendl in the 1989 French Open.

Ken also said that due to being sore from a tough run the day before, his lateral movement was not great.

So basically, he was giving me my game plan.

Every time he was about to serve, I moved back to the baseline where I would normally go.
"Move up, move up," he kept reminding me.
Thanks, Ken.

I remembered to hit drop shots and move the ball around.
In between points I took a few deep breaths and walked around the court for a minute, letting the breeze brush against my face. It was really warm, sunny and humid, but it felt good to be out there.

I asked him if he wanted to play another set, but he said he didn't want to be the one to do me in.
And I remembered that I need to stop before I'm tired.

I went back to the house for my "second breakfast," warmed up peach cobbler and coffee. I don't remember as much as I should from Thomas Mann' s "The Magic Mountain," but I was struck by the elaborate second breakfast and many other meals served to tuberculosis patients in an Alpine sanitorium before WWI. (Second breakfast, apparently, is common in parts of Europe.) I enjoyed my second breakfast sitting at my kitchen table and reading the newspaper.

I miss my job as a daily newspaper reporter -- you can't return to work until a year post-transplant -- but I don't miss rushing to work.

And, really, there's nothing like playing an opponent who tells you where to hit the ball and where to stand.