Wednesday, September 30, 2009

in decision …


i should say i am in seattle among greatest oldest friends. i was right about houston recommending radiation followed by chemo, and am here to see a doctor who does not automatically recommend chemo for every patient with MCC. i saw two of this species yesterday, each disrecommending chemo for different, yet sound, to me, reasons. both recommending radiation strongly, which i'm now likely to do—just must decide quickly where! hard for me. give me 3 days. (it may likely be in an area with enough business to support a radiation oncologist who specializes in head and neck radiation. it's a 6 week/2 month gig.) any thoughts? i am very well and well supported. love marty

Monday, September 14, 2009

biopsy sounds on the good side


my biopsy pathology report is they removed 24 lymph nodes and of those 2 are positive for Merkel cell carcinoma (MCC). it appears contained in what they removed, so no signs of disease remain in me. however this is a pretty sneaky and aggressive cancer, so 1. i won't be considered clear until 5 years from now with no recurrance, and if you read too closely, that is generally unlikely—once it is in the lymph system percentages are not great. however mine has all along been behaving very unusually, maybe it'll continue. and 2. they are likely to recommend chemo and/or radiation when i go back to houston (a week. Saturday to Saturday) and see the docs Monday and Tuesday Sept. 21 & 22. i feel i need to participate in these decisions. will let you know more then as i know.

am recuperating pretty well. good energy with plenty naps. one symptom is likely permanent: Horner's Syndrome = a droupy right eyelid and a smaller pupil in my right eye, vision a bit disoriented-fuzzy slower to focus, but i can see most everything i want to see and read well. one symptom may recover fully: lower right lip muscle is non-responsive, so i bite my lip a lot and i can't whistle like i used to—hope that'll come back! i'm in just plain good spirits and endurance for doin what i need to do, like write rigorous letters to doctors this morning.

more in a week and a half. (i can answer the phone and e-mails pretty well.) love. marty to my circle a a mazing hearts

Tuesday, September 8, 2009

Thursday, September 3, 2009

i'm in JAX, as they say here.


i'm in Jacksonville IL again, after cancelling my own self-offered carrot for will to live = a trip to Indianapolis to attend the memorial of the mother of all us mothers of the radical Naptown 60's, Jane Haldeman. It will be nice for all those there who were also there in 1968-72 as I was and haven't seen each other since. Immense days. But I need to rest often and on demand. I have low energy and low stamina—which is to be expected, Marty. So I finally had the sense to cancel that trip and take a free "Rapid Rewards" last-minute switch flight from HOU to STL and cousin Lynne picked me up and drove me the 2-hr rt. 67 north from there to Jacksonville.

Here I have no deadlines in the forseable future. I can sleep the whole thing if I want. But after 10+ hours of sleep last nite, after lying down and resting the whole afternoon, 4 hours, I felt like getting up and ended up vacuuming my whole room lock stock and barrel in true Marty fashion. Then i took a nother nap. Now I'm hungry and can just go down and eat. This was the right decision.

I've a few symptoms that may well go away--fuzzy vision and compromised jaw and lower lip muscles/movement, but i am fully able to see what i need to see (including this fine print as i key it in) and eat what i want to eat so far. And I am happy. Immense love and support in Houston from José and Winifred and the Sallans family, my couchsurfing angels.

The big thing of the moment is waiting for biopsy reports regarding everything surgeon Dr. Ross took out. I am not anxious or overwrought in this wait. It'll be in a few days, by phone. And if not, I'm still relaxed, it'll come when it comes. What it will affect is future treatment plans, which are likely not to truly form or begin for at least 3 weeks.

Does this sound like Marty? I sound like Marty to me. This last week I certainly did not always. Ask José and Winifred. But they both agree I do now I think. I love every one of you looking in here with your loving support. My energy for correspondence should be fair to middlin in a few days. Love. Marty