Aftermath
Friday, 6/27/03: Well, I didn’t get shingles, but that didn’t prevent me from some medical excitement this week. Starting last week, I noticed a big red blotch on my left shin - it looked like a bruise, but it itched like a weird mutant mosquito bite. A few days later, another one appeared on my right calf. This was strange enough that I made an appointment with Dr. Roberge, even though it was clearly not shingles. On Monday, Dr. Roberge took a look, then Dr. Hoppe took a look, then they sent me off to dermatology. The next day, I saw Dr. Samantha Wyatt and Dr. Youn Kim (whose specialty is “cutaneous lymphomas” - I didn’t know there was such a thing). By that point, Itchy and Scratchy had been joined by a bunch of smaller itchy bumps on my elbows, knees, and lower back. I was pretty convinced that they weren’t bug bites, because you’d think I’d have noticed a swarm of bugs attacking me, and I was reasonably sure it wasn’t poison ivy, because I don’t ordinarily poke my elbows into plants. The doctors asked lots of questions about whether it could be an allergy, but I couldn’t think of anything new I’d eaten. Then they said one of my least-favorite words: biopsy. Dr. Wyatt took one of the bumps from my leg, and I should know more today. She insisted that a new cancer was really unlikely and that it was probably an allergic reaction.
Meanwhile, the rash is spreading, and it’s really itchy. I have some prescription lotion that works OK, and cold compresses definitely help.
I’m currently planning to go back to work on Tuesday, unless this skin adventure makes it ill-advised.
(later the same day) Just got off the phone with the doctor, and the verdict is in: it’s an id reaction to a bug bite. An id reaction is when part of the body has a darn good reason for getting itchy, and other parts get jealous and join in the fun. Dr. Wyatt’s going to prescribe a stronger ointment and an antihistamine for me, and I’m to call if any of my beloved itch sites seem to be infected. Otherwise, I should be fine soon.
I didn’t think to ask whether the id reaction was a result of either Hodgkins or the treatment. I’ll ask when I go in to have the stitches from the biopsy removed.
Monday, July 7, 2003: I really wanted this web site to develop like a classic novel: the protagonist has a problem, complications ensue, the thrilling climax solves the problem, and the protagonist rides off into the sunset with a greater appreciation of the beauty of the world. Or something. That must be why they call it “fiction”.
By Tuesday of last week, when my rash was redder, itchier, and more widespread than ever before, I went back to Dr. Kim. She and Dr. Atwood agreed that it probably wasn’t a bug bite, and that it might instead be idiopathic, which is doctor-speak for “we have no idea”. They prescribed some prednisone (the baseline- personality-enhancing drug I had during chemo, which apparently works on rashes as well). I’ll be on the prednisone for about three weeks. They also took another biopsy to check for something-something vasculitis, an inflammation of the blood vessels. If it turns out to be vasculitis, the prednisone will work, but vasculitis is (oh joy) a recurring condition that can be controlled with drugs with fewer side effects.
I went back to work last week despite the rash, to a warm welcome. Tomorrow I’ll see Dr. Kim to get the stitches from biopsy #1 removed and the verdict on biopsy #2 explained. I’ll also ask whether my elbows and knees are supposed to feel sunburnt and my legs are supposed to look, but not feel, bruised.
Wednesday, October 8, 2003: Since I last wrote, I’ve been back to Stanford for my first follow-up visit and an intermediate visit to Dr. Horning to figure out (1) why I was still so tired, and (2) why this stubborn rash won’t clear up. They did a bunch of tests, so I officially don’t have anemia, leukemia, Lyme disease, a conked-out thyroid, or a relapse of Hodgkins. Guess what - I’m still idiopathic. Considering what Dr. Horning was looking for, I guess I’m glad. My next follow-up visit is in about two weeks. I’m feeling confident enough about it that Alana’s planning to meet me at Stanford mall for some therapeutic shopping afterwards.
Tuesday, October 20, 2003: My follow-up visit was today. They did a chest x-ray and a blood test, along with the usual blood pressure, pulse, and weigh-in. I’m boringly normal, and they don’t want to see me again until January.
Friday, July 23, 2004: Last week was my official one-year-since-the-end-of-treatment visit. Although the doctors had warned me that everyone has a scare in the first post-treatment year (a strange-looking x-ray or a bump that doesn’t feel right), I dodged that particular excitement. In the last year, Stanford’s built a new cancer center, which I guess is better than the old one. For one thing, you no longer have to go up and down the escalator to get all the various tests done. It’s hard to get too excited about a building with “cancer” in its name.
All the tests this year have been fine, so now I’m down to the once-every-four-months plan. 20% of the way to cured!
Best interaction with the doctor
Doctor: Was your hair this curly before chemo? Me: Yes, but it wasn’t this gray. Can I complain about that?
While my appointment was on my mind, I tried googling ‘Hodgkin’s TiVo “Stanford V”‘, expecting this site to come up (Mike added a bunch of keywords a few months ago). To my surprise, it found a TiVo-loving Oregonian who was treated with Stanford V earlier this year. Check out Preston Hunt’s site!