Staying in the Present: Go Niners
Happy Super Bowl Sunday, especially to all of you in the Bay Area. Today is a good example of what will be one of my ongoing lessons for 2020 – finding happiness or at least peace in the present and not wishing for the past.
I’m afraid this update has very little good news. The transplant has failed. My cancers are back, having broken through the donor stem cells. From a medical standpoint, there is a small possibility of the stem cells reengaging, and the doctors are giving it a shot by taking me off my last remaining immunosuppressants. My healers are working hard at reengaging the stem cells as well.
The main medical focus will be reducing symptoms and hopefully slowing the growth of the disease with a medication called Jakafi, which I start this week or next. We will also start looking at clinical trials.
My diagnosis – again from a medical perspective – is fatal. Life expectancy is anywhere from 1-5 years, more if we hit the jackpot of a new treatment. I have a number of risk factors, such as >65, hemoglobin under 10, some night sweats, etc., which lower the expectancy. However, the Jakafi could raise expectancy. It’s simply a big, wide unknown.
So, the life question now is how do I want to spend my remaining time? The deepest answer is sharing love and time with my closest friends and family. So, please, help me keep my calendar full of visits (both ways) and shared experiences. Hanging out, finding fun things to do, weekends away, guests, staying over with you will mean a lot and help me stay less isolated and depressed. I can fly as long as I’m feeling well enough.
Organizing a couple of private group tours with my friends to some remaining places on my bucket list is a dream, e.g. Japan and Greece. I’ll just have to see how much energy I have and if there is any interest from you.
I’m likely to become more fatigued as the year goes on so will eventually appreciate help with laundry, etc. Don’t worry, I’ll ask.
On the fun side, where last summer’s steroid frenzy created a new deck, this latest frenzy resulted in a lot of new winter clothes hanging in my closet (all on major sale, of course). I am looking very fashionable these days. I’m enjoying it and trying not to think about how little wear I might get out of them. Jedi mind training...
Well, I imagine that’s enough bad news for one missive. Hope to talk to you all soon.
Love,
Joanne[...]
