And then a surprise: being told off-handed by the doctor who performed the bone marrow biopsy that the BU pathologist did not find an amyloid in the tissue sent from UPMC!
And than a return flight back to Earth today when the hematologist laid out the options once again centered around the amyloid theme. In short, given the aforementioned MGUS (light chains in bone marrow and circulation) plus the same proteins on the trigeminal nerve (whatever anyone's conclusion about it), equals pretty much the same diagnosis.
Net/net tentative: probably no therapies ... yet ... 3 month blood tests and 6 month organ tests. According to this doctor, I should expect to have therapies within the next three years. I am not going to post his theories about how long that therapy lasts because in that amount of time so much can change it is silly to sit here in the hotel room and speculate on such attenuated diagnosis.
I confess that for the first time in front of a doctor I became a little upset when told about this trajectory, but in retrospect I think it is more because of the rapid and wild change of expectations since we have been here. Driving up Denise and I were prepared to hear that therapies could be imminent. Being told yesterday that the thing on the nerve was not even an amyloid raised my optimism above guarded, but alas, this afternoon's conversation threw my emotions into reverse quickly and I feel the backlash.
To be sure, the prognosis could be much, much worse. We are in a class of people here for the three day evaluations where it is evident that for others this visit has come a bit late, so I count my blessings. I was excused today from the support group that focuses on preparation for bone marrow transplants. But I am tired of all this medical stuff, and tests and interpretations, not to mention battles with the insurance company and surly staff people. As a rule, my personality is better girded for a challenge, and I tend toward anxiety to be in abeyance. Glad, infinitely glad, to have Denise with me. I also miss and want to be home with my children. Not even the allure of Boston is doing much for me right now, this city of my dreams where I fled decades ago when I ran away from home in Rochester. Right now I merely wish to think of something, anything, that does not smack of medical terms and diagnoses.
Pardon my intemperate post ... just want to share what is going on and let family and friends know that in the midst of everything I am thinking about you. I feel every good wish, hope and prayer and look forward in each person's case to returning the kindness!
By week's end the attending doctor for my case will call me with the formal assessment. I will be sure to share that information as well. Hell, by then perhaps they will tell me that I had the disorder, fell through Alice in Wonderland's time warp and am already cured!
Snowing wildly here in Boston. Can't wait for spring :-)
Tracy
5 comments:
Hugs, Tracy. I am following every post!
Thanks, Molly, always great to hear from you! Love the picture, you look terrific!
Tracy
You're in my thoughts, Tracy.
Hi Ben!
How is the UK treating you?
So glad you wrote!
Tracy
Tracy, I'm thinking that this is a clinically confusing illness that has to be awfully hard for you or any other rationally processing person to confront. I personally deal better with things that I can point at and say, "There the evil is." Instead, all you get is fog. All of us are focusing mental energy to burning away that fog to reveal a clear path to only good news. Or, given the weather at the time of the post, maybe the image should be plowing through the snow. Take good care--Chip.
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