Thursday, April 24, 2008

some encouraging news

Another month since I last wrote. More of that slow motion I described then.

It's fair to say, though, that some things have happened.

Another CT scan in March showed that the lymph nodes have not grown or proliferated since first diagnosed in December. That is definitely a good thing.

Analysis of a recent blood sample showed that a particular kind of chromosomal mutation had occurred and, contrary to what might seem preferable, is actually a good thing. I am over-simplifying, but it means my body reacted in a way to combat the problem. It's what Dr. Terry Hamblin, the CLL specialist in England, calls a "prognostic indicator," and in this case it just means the odds for more years are improved, but not at all guaranteed.

Another test---called a FISH test (flourescence in situ hybridization)---was to have been done on that sample, too, but was apparently either botched in the lab or "didn't behave normally," so they drew another blood sample and tried again. I haven't heard the results of that yet. Writing this reminds me to call and nag them.

I wrote a letter to Dr. Timothy Call, a leading CLL specialist at The Mayo Clinic, Rochester, Minnesota, to see if he could fit my case into his workload (for that "second opinion"). I thought I'd ask him directly before going through the hassle of getting approval from my insurance company, only to find out (perhaps) that he could not. A visit to him would be instead of going to The Dana Farber Institute in Boston.

Three or four days later, my cell phone rang. It was Dr. Call. He wanted to let me know he would take my case---no problem. He said if I could only be there for one day, he'd probably see me once in the morning and, if necessary, have some tests done and then see me again in late afternoon. If I could be flexible enough to hang around for a couple days, so as to be sure of a thorough evaluation, that might be even better.

Once again, I am amazed that a reknowned specialist would take the time to contact me directly (never have had doctors before that would do that).

So, May 13th is the date in Minnesota, just down the highway from Lake Wobegon.

To make the whole thing more fun, Matt and I will fly out on the Saturday before, going to Chicago. We'll catch a Cubs game, then drive to a Sunday game in Milwaukee, then drive to a Monday night game in Minneapolis (versus the Red Sox, no less). After the Twins-Sox game, we'll meet Nancy, who will have flown from Albany. Then Matt will fly back, Nancy will stay for two days of consultations with me and fly back Wednesday night. I'll hang around as long as necessary and then fly back to Albany. Slightly complex, but it ought to work!

Last bit of news: I went to a different sleep-specialist doctor who seems a bit sharper. He authorized a reduction in the air pressure of the CPAP machine, so I picked up another one from the "official vendor" authorized by my insurance company, tried it last night, and promptly pumped my stomach full of air again. Darn. I'll try it again tonight, but I expect the same miserable results.

So, that's the medical news for now!