This is part of an email exchange at my personal email address, but since it contains thoughts relevant to this string, I thought to include it with some edit-outs of personal info from the sender.
Well, I say shaking my head, it’s nice that my very unconventional views are finally finding a welcome somewhere, albeit very late (if not too late) in life and only resulting from a medical event the equivalent of a firing squad. I’m very surprised I have such support for my approach and view anywhere and really seem to have it here. Oddly, I really haven’t received much flak from anywhere; I guess those who don’t like my way are staying mum or out of sight.
It surely is a bad cancer. No need to soften any words with me about anything. As for resources, I was lucky to have Dr. Carlos in Boston and his anesthesiologist; I am lucky to have my onco Dr. Hoffman here in LA. He understands my position and won’t fight me on it. He told me (and those I always bring with me, my daughter and best friend as witnesses as I need to recall everything that was said where I might miss something were I alone) that his mom would do as I am and his dad would do everything to fight it with chemo, radio, surgery, etc. He is well-educated about all this, important as even the smartest on this don’t know that much. On the other hand, Dr. Patty, radiation onco down the street, is insistent I undergo a series of blasts at her place. She is tops in her field and very sweet and the place is great. But it was she among 4 others who misidentified those liver blobs. Her machine rotates and would shield a lot of me from the positrons but would bake the upper part of my right kidney. I asked about the adrenal sitting atop that kidney and she said in all her practice she’s never been asked about that at all. I ask what others don’t. I don’t just go along. I need that adrenal and her answers didn’t assure me whatsoever. She keeps wanting me to “come down and chat” but really get pressured into her series of radiation. Best stats are they would only improve my chances 10% at best under the schema of I’m 60% dead anyway and this would reduce that to 50%. But I would be sick, tired, have a disabled kidney and baked adrenal, etc. and what if getting hit lowers my overall immunity so I’m now just weak enough where the cancer can jump over my now lowered fence like a Little Sheep of Death? I am hugely more willing to die (inevitable) than be sick (a choice for now). Now if this were breast cancer with tons of studies and facts and where adjuvant therapy increases one’s chances around 70%, I’d be going for chemo, radio, whatever they said.
So I’m not really “fighting it” in a normal way of speaking. I take weird and unknown Chinese powders and pills, eat asparagus (heard about that one? It’s the only cancer cure anyone needs! Look it up), avoid things that weaken me, don’t let myself get too tired (I nap), stay busy and out of hospitals and lots else. I don’t do as much or more than I do do. It’s a ying-yang approach. Haven’t got to Xi Gong yet but consider it important and it’s on my list. The yoga at the Onco place I go in LA was far below my level and not my cup of tea; they offer Xi Gong there & I’ll try theirs first.
Your husband's history with a lower tummy gone wrong is really long and must have been quite a trek for anyone involved. My old friend has had IBS and surgeries and all that stuff for 30 years and he was an nuclear submarine commander! How can you live underwater and have heavy responsibilities and your guts are on fire all the time? My hat’s off to your husband and his kind, long-sufferers in a body region most just take for granted scratching our pizza-fed, pouchy bellies and never noticing much about much.
You are very sweet and it’s nice to be understood as only we in the cc club can understand each other.
Thanks for writing