Friday, May 30, 2008
I’d been to the Cancer Center to have blood drawn this morning and was sitting on the train on my way home from the City when my cell phone rang. My doctor announced herself.
“Oh dear,” I exclaimed. “Was I supposed to see you this morning? I wasn’t aware I had an appointment.”
“No, she said. I’m calling because ABC contacted me. They’re doing a piece on melanoma awareness and they want to interview a couple of my patients. They asked for someone who’d had melanoma on their foot and I thought of you immediately. People need to know that melanoma can show up in unusual places and they need to see more of cancer survivors.”
We talked about it for a few minutes and I agreed to the interview this coming Tuesday. I’ll let you all know when and where to find the broadcast.
My big decision at this point is whether or not to wear the wig. I’m leaning toward “not”. In fact, I went to my lab appointment in the City this morning without it!
Monday, May 26, 2008
I did something new this weekend. I went to a craft fair in Massachusetts with my friend, the gallery-owner. That’s not the new part. I’ve gone to several such events with her, and many more on my own. It was a perfect day for it, one of those glorious spring days you wish could last throughout the year. She picked out things for her store and I window-shopped.
The new part is that I went wigless.
I’ve been thinking about my hair a lot, now that it looks like I may keep it with this new treatment. It’s grown back to about the length it was last Thanksgiving, which is to say, it’s just barely long enough to cover my head. I’ve been hoping for it to grow in curly, but it’s still too early to tell if it will. As before, it’s completely white, and not quite a hairdo. It needs another month or so before it will look “intentional.”
I have taken off my wig in the company of friends before. It’s easy with people I trust and so much more comfortable. I figured that going wigless among strangers would be a good next test for me. And I didn’t feel uncomfortable or self-conscious about it at all, even when we ran into people we knew. In fact, the only comments were compliments.
As with all things new and fearsome, the anticipation was much worse than the actuality. Self-consciousness is certainly self-defeating! Why should the prospect of appearing in public in a different guise upset me as it does? I can’t answer that except to say that if this were easy for me, I’d have to be a different person.
The final frontier will be going to my client, where I’ve been working onsite about once a week for the past couple of years. I’ll have to mull it over a while longer before I show up there in the buff, so to speak.
Friday, May 16, 2008
I started my new treatment this week. So far so good. My doctor and I were talking about what side effects I might expect, most typically rash, itch, and diarrhea.
“But most patients don’t see those until after the third cycle, if at all,” she said.
“Third cycle?” I asked, visibly distressed, recalling the schedule the nurses handed me last week when I was in the office for blood work.
“I meant the third treatment. You’ll have one now, then again in three weeks, then a third three weeks after that.”
“But the schedule they gave me last week has appointments through October. I thought a cycle was twelve weeks, and their schedule includes two full twelve-week cycles.”
“Yes, but the second twelve weeks is observation only. You get scanned after the first twelve weeks. We watch, and let the meds settle in to work for another twelve weeks. Then you get scanned again. This treatment is long-acting. We’re not likely to see any change until after that second scan.”
I was still stuck on the schedule they’d written out for me, so I pulled it out of my bag.
“See, it shows appointments all along through the second twelve weeks.”
“Well that’s a mistake,” she said, to my relief, and went on to explain more of the protocol.
After the initial treatment phase, patients go on maintenance, with infusions every three months. Because this is still a research study, there’s no definitive word about how long this should go on, but eventually, the treatment will reduce even further, or even be discontinued.
She warned that the first twelve-week scan frequently shows no improvement, and may even show a reversal. Patients however, tend to report feeling a lot better at that time, so the researchers have learned not to scan too soon, and not to take these initial results too seriously. The second twelve-week scan is when improvement is most likely to show.
After our discussion and hugs I went to the treatment floor, where the nurse administered my intravenous dose of Ipilimumab, and measured my “vital signs” (temperature, blood pressure, pulse) before during, and after the infusion. The process was painless, and I’ve been feeling fine since.
Oh, and I got a lesson in how to pronounce the drug’s name. It’s not so tricky after all: Ip-li-mu’-mab. Just trips off the tongue!