03/10/2024
Lymphoma and health update # ...?
My personal journey:
I have not commented publicly in a while on my health. But people still ask "How are you?"
In my life, it health is the dominant theme long past the time when I was hospitalized, for what I hope to be the last time in October 2023 for 4 days due to low hemoglobin//anemia. Unless you know me personally and have reached out or vice versa, its been hard for me to keep up with all my needs. And communication is indeed one of them. Please be in touch.
And, So, here it is:
Bodily health: 1.5 years into my stem cell transplant, there are still some complications. These are not major threats in the spectrum of my relative traumas, but there are a few changes I will have to always live with such as scars and loss of some of my range of movement due to back surgery. My immune system seems to still be trying to attack or rebuild some of my liver tissues. Docs have told me both. But nothing is out of control. Its relatively calm waters.
My instincts point to naturopathic, softer paths to cleansing. Intermittent fasting, perhaps, certainly deeper dietary awareness and some experimenting to see what might be best fit. Diet is too often neglected in medicines modern, pill oriented management. Low sugar/processed foods input is good, but harder as we all love sweetness.
Like clouds, my emotions and physical realities give rise to passing shadows of the deep sense of vulnerability that this experience has planted in me.
I have learned to look at and love all clouds, as I love life honestly and find truth in living every day fully.
Occasionally its all I can do to get up and not sleep thru the day, which tells me that deep rest is very much needed.
More often in this Spring season I cannot wait till dawn, and find myself at three am in my studio again, making new spheres, inventing and playing with creative edges, conceptualizing, experimenting with process. Its regrowth at its best, engagement as a tool and natural response when sleep does not come and pills are not the answer.
I am down to three meds a day and lots of vitamins and quality oils in my diet. 2 of my meds are non op**te pain relievers/antidepressants, one an immunosuppressant that I am trying to escape but some time still needed to normalize things. More on the latter in future posts. Again, different docs tell me everything from be prepared to take this one the rest of your life to we can try to phase it out once liver protein levels have normalized for a longer trend.
Mental/Emotional: PAIN> this has been a near continuous thing for 3 years now. Best relief is lying down, or ketamine therapy. Pain meds mask or block it temporarily, but do not eliminate it. I find I can learn to live with some, but it does indeed take its toll like a low level chronic torture and that wears me down thru the day. Its a tortuous form of PTSD. I get big doses of expressive intensity that are in part voices of my inner spirit fighting for validation and renewal.
Thank you Dr Inai Mkandwire for commenting that continuous pain for years is a form of torture. Too often we go thru procedures feeling a bit like a body in a health care processing system, when in fact we are all whole humans needing some sense of personalization, especially for such major things as I have had to accept and process like a veteran soldier of heart, body and mind.
People, including myself at times, want to be "normal" and all I can think about is "wtf is that?!?"
I do get wound up sometimes. Please give me the freedom to be open, unquiet or expressive as feels necessary.
I have a personal log book now, journals with comments and poetic expressions. It is my therapy and my truth to write.
Spiritual:
I have come to realize that I will probably always have to navigate some more dramatic changes in feeling and find it very engaging to contemplate on the topic of truth. I am thankful to still have this gift we call life, living on earth. I go from feeling ecstatically glad that I am alive and can create, to occasional plunges into my deeper self while this same deeper self abides under the protective higher awareness that some call God within, others their Inner Guru, Peace within and without. Om Shanti. This is my truth. We live in a shared world with many personal realities and stories to tell:
Future:
For health, I maintain focus and clear communication while navigating my own issues and in an overly complex health care system. For work, more creative pursuits, growth, needs to be matched with means still not sufficient.
I also started The Sylvan Fund to collect seed donations to plant trees. The initiative will legally become a perpetual trust that supports forest habitat and lives long beyond our lifetimes to help keep atmosphere cleaner and give us all the many ecosystem services that forests provide. They are essential, not optional. Every American has a carbon footprint amounting to many thousands of dollars each year that they have lived:
Speak for the Trees!
Please give generously within your means to the future via trees. Your voluntary carbon footprint offset is available here and now, below. Don't wait of feel hopeless about climate change. Action is the answer. Consider more major support for the long run. Lets leave a good thing behind when we lay down our mortal bodies. For now mine still is eager to live and do good work. Here you can help in a win win win way as I will be your go between, your link between turning on the heat or taking a road trip or flight, and the place where that carbon is best resorbed, into tree biomass of forest ecosystems.
I still have good work to do for you out in the forest, and for arts sake in the studio and elsewhere.
Thank you all for your support and caring.
Purpose: Photosynthetic carbon sequestration - supporting forest preser… Robert Strasser needs your support for The Sylvan Fund - Buffering Climate Change
