Well, I made the long-awaited trip to Mayo Clinic, at Rochester, Minnesota, with a few stops along the way with Matt to catch some ball games at Wrigley Field in Chicago, Miller Park outside Milwaukee, and The Hubert H. Humphrey Dome in Minneapolis (where the Red Sox looked more tired than I did).
Mayo Clinic (they don't call it THE Mayo Clinic, I noticed) is amazing. Picture a 15-story Las Vegas hotel, because it really is run a lot like a destination-resort sort of hotel (except no lodging), that offers state-of-the art medical services instead of gambling. Big lobby. Check-in counter just like a hotel. Then multiply that times three, because there are at least three buildings.
Down to business: I brought all my medical records and actual "glass slides" of the stuff other doctors had extracted from my body. More blood samples were taken. I met with Dr. Timothy Call, a quiet, congenial sort of fellow who is said to be one of the top experts on CLL/SLL in the world. As Nancy and I sat with him, he went through all my records. He spent an hour with us and asked me to come back the next afternoon to discuss it some more after the new blood samples were analyzed. He spent another hour with me then and lined me up to see an ear, nose, throat (ENT) specialist so we could have benefit of that perspective as to how all this relates or does not relate to my sleep probem.
The upshot of the ENT consultation was that my basic body-build gave me a narrow air passage, anyway (O.K., a skinny neck. He was being polite), and that I do have somewhat enlarged tonsils. My uvula is about twice normal in size, and there is some modest swelling of lymph tissue around the base of my tongue. Oh, and I do have a "deviated septum," (basically a crooked nostril from a baseball accident when I was about 12. Mom always said Louie Meade was a bad influence ... he was batting.) "But," the ENT guy said, "no single one of them is causing the problem. They are all contributing to it."
Options for fixing that? Surgery? Possible, but very painful for a week or two.
Focused radiation? Possible, but could screw up my saliva production.
CPAP machine? Possible, but hasn't worked yet and does not address the cause.
Do nothing? Possible, but unlikely to have things remain "as is;" meaning the problem is likely to continue to gradually grow worse.
Monoclonal antibodies? Possible, but it is a kind of chemotherapy that intentionally impairs one's immune system for a while and carries heightened risks of other infections, like pneumonia. But it would also shrink all the swollen lymph tissue in my body for some extended period. How long? A year? Two years? Seven years? That's been the range of other Rituxin recipients.
The final bit of news from Dr. Call was that he is thinking maybe the initial diagnosis of CLL / SLL is not quite correct. It may be something very slightly different, a kind of lymphoma that mimics CLL. His pathology lab is going to do one additional bit of analysis May 19 or 20 to give him some further clue.
The significance of this slight difference is not so slight. If it is this "other thing," he thinks it might be more treatable than a "standard" CLL.
I'm not sure how I feel about that. I had pretty much convinced myself that my condition "as is" was not treatable and unless it morphed into something else, I was not likely to have to go through chemotherapy and intentionally dismantle my immune system in the name of getting better.
Well, no sense thinking about it until I hear the news.
Time to pile up the pillows and take a slug of Nyquil. It's bed time.
