I’m sorry that it’s been almost two months since I updated the site. I’ve been so exhausted - and often in pain - from all the hair pin turns, valleys of despair, sudden glimmers of hope, changes in doctors, endless appointments and procedures that I just haven’t had the energy to write. I’ve come up with several titles along the way: Mr. Toad’s Wild Ride. Stick a Fork in Me, I’m Done. A Sudden Leap of Faith.
In the end, I settled on Take This Job and Shove It…Unless It’s Working.
Beginning in April, the percent cancer blasts in my blood started to increase quickly. This is a key measure of the disease progression. I had been told by Kaiser that once they reached 20%, I officially had AML, acute myeloid leukemia, and would have months, not years, to live.
According to Kaiser’s lab, I hit 20% on June 13. I was alone at the house (of course) when I opened the results. In the two years of this journey, I can count the number of times I’ve fallen into crying hysterics on a couple of fingers. The two poor friends who happened to be home that night had to keep telling me to breathe, I was crying so hard.
However, as things seem to go with this odyssey, almost simultaneously I was introduced by an old client to a private medical clinic in San Francisco, Anatara Medicine. They are an integrative medicine practice that incorporates leading edge procedures not covered by insurance. I took several deep breaths, pulled out a lot of savings, and started seeing them on June 15.
My job today: leave the house at 8:00 am, drive into San Francisco, park in a garage, walk 2 ½ blocks (one uphill), sit for 5 hours with an IV needle in my arm, drive back to Marin, force myself to do a short walk, enter my door at 4:00, collapse, have a little dinner, and crash to sleep at 8:00 pm. Then, do it all over again another 3 days a week. The fifth day is generally devoted to Kaiser appointments, such as giving blood, getting a bone marrow biopsy or driving to Sonoma for radiation on bone lesions. (These are fun little side effects of my disease which create porous bones. Apparently, I broke a rib recently which is healing. No wonder my side hurt so much.)
So, as I said, take this job and shove it. But…
Last week, after two weeks of treatment at Anatara, my cancer blasts went down significantly. Depending on whether it’s the Kaiser lab or Anatara’s outside national lab, I’m at 14% or 9%. I’m trying not to dance yet because the blasts have gone down before and then sky-rocketed the next week. However, it is very encouraging. This hope is supported by energetic readings from other channels such as my healer, a biofeedback machine, and my astrologer. If there was ever a cross-your-fingers-moment, this is it.
Sheltering in place is making this even harder since I have to do all of it by myself, ill and anemic. Safe distancing visitors – or even help with driving if at all possible – are very appreciated. The SF clinic allows visitors (testing temperatures, etc.), and I’ve had people at the house for takeout, spread outside. Neighbors have also been good about picking up a few groceries since I’m avoiding crowds. Any get together that feels comfortable to you will brighten my day.
Much love, health and sanity in these times,