February 27, 2004: An actual hiccup

Friends: This will be a very brief note, for while there are a lot of competing emotions and feelings as the month ends, I’m afraid that fatigue wins this afternoon. Because of that, and because of the nature of what I have to tell you, I’ll get right to the point.

YO-YO

As most of you will remember from past updates, for nearly five months now I’ve been part of a nation-wide, multi-institution, double-blind study of a new drug called Revlimid (renamed from Revimid by the fine folks at Celgene Corp. sometime since the study began), a drug that if approved will become only the second drug specifically developed as an indication for Multiple Myeloma.

My participation in this study had been, until last month, extraordinarily positive. Since beginning the trial we had seen my UPEP protein “counts” plummet at rates that were unprecedented; in fact, after just a couple of cycles we’d seen nearly a 90% reduction in my numbers.

However, my January results put a quick halt to all the back slapping and enthusiasm, as those test results showed my counts again on the rise. While the numbers weren’t drastic—the increase (from 2.04 to 2.81) was enough to make everybody stop and wonder what and why it had happened: and more importantly, wonder if that new trend would become a trajectory, or if it was, as I wrote in my last note, a “hiccup.”

That wondering was also especially difficult for Sheri and I, since we’d have to wait three weeks before our next set of tests and then another week after that for the results.

And so we tried to be wise and busy and not think about it too much, but I gotta tell you, that’s not really possible, especially when your doctors and nurses are clearly trying to give off a vibe that I can only describe as “contained pessimism.” Indeed, while they never said it out loud, it was clear that almost everyone expected my February counts to increase. They had long conversations with me about what that would mean—unblind the study, examine other options, perhaps begin preparation for a bone marrow transplant—all while giving faint hope to the notion that they could be wrong, and that the January counts were an aberration.

And so we asked you to pray, and we tried to not think about it too much. But we did. In the past month we’ve had more conversations—and good cries—about the idea of dying than in most of the half-year preceding it. (At least one of these was magnified by a dinner saying goodbye to my best friend who is leaving Philly for Texas, which might as well be dying!)

And so, finally, came this week. I had had all my check ups and tests right after Valentine’s Day, and the results were due Monday.

Nothing.

Tuesday, they “promise.”

Nothing.

Wednesday? Finally at 5 pm, the following from the nurse who is supervising the study:

Your monoclonal proteins from beginning of study are as follows:

10/22/03 11.95
11/25/03 5.08
12/22/03 2.04
1/20/04 2.81
2/17/04 0.81

Pretty nice!!!!

You can only imagine how happy we are this week. In fact, the only thing we are more than happy is weary—we’re just beginning to understand the toll that the last month has taken on us, a toll that has been magnified a bit by the steroids that I’m still taking in very large doses and making me a bit bonkers.

So don’t expect much from us this weekend besides perhaps a bottle of wine and a nice meal. Otherwise, I’ll be the guy sitting on the couch either about to fall asleep or having just woken up.

Thanks for praying for us this past little while. Remember those whose news is not so good.

Love, dwight

E-mail Dwight | Back to Cancer Journal Index Page