Last Sunday, Eliana came for Mother's Day! She was flying back to Montana from New York, had a layover in Salt Lake and they were overbooked! So she got paid to have Mother's Day with her mom! All three of us had Mother's Day together! We went out to dinner, had cocktails in the sunshine, came back to our house and napped and then I took her to the airport and her backup flight went smoothly!
Yesterday I did "Running with Ed," a fundraiser for Park City Schools. It's a relay and I ran and power walked one of the shorter legs--but I still qualified for the margaritas in the KPCW van! We'd drive from one handoff point to another to cheer our teammates on. As the morning wore on and we drank more margaritas, discipline slipped a little and not everyone got the cheers they deserved. Gav joined us to cheer us on! AND drink margaritas! It was SO FUN! I actually just had a little margarita, I never was a day drinker, even in college, and now I am still going really easy on alcohol because I have great respect for my liver. I was amazed at all the hugs I got from friends I've made in the past year! Very wonderful. And then afterwards I met another friend for coffee!
Now I am off to the airport to head back to Houston and here is the scoop. First, all is well!
Here are the deets:
I've been getting scanned every five or six weeks as part of a study I'm in. I had four nodules in my lungs that apparently were already there when this little adventure began but they just sat there.
Just to recap: In the summer of 2022, just before I bought my new place, they grew very slightly. That qualified me for this new CAR T immunotherapy treatment in November of 2022. That is when they extract your white blood cells from you, send them to superhero training camp and they learn to recognize a protein or gene or something that is unique to anaplastic thyroid cancer, which is what I was diagnosed with, so they go in and destroy it whenever they see it. It had an immediate and dramatic impact, my doctors and I were all tap dancing because some nodules shrank, one disappeared, etc. But then the shrinkage slowed, and three weeks ago, a PET scan showed one nodule had increased very slightly, so slightly that my endocrinology and immunotherapy teams were somewhat surprised that the radiologist, said that it had "progressed," which I guess means grown.
My endocrinologist called it insignificant--although she wants to treat it--and said she is "not worried. And she asked me to come to a conference about people with thyroid cancer which is shifting its focus from honoring those who have "passed," (ugh, I'm like just say died), to celebrate those who are surviving. I'm going to suggest that they say thriving, surviving can all too easily be construed as hanging on by your fingernails., It's all because they have made incredible progress in curing cancer.
What my medical team wants to do is have me do a second CAR T round but because this is all an experiment, they have to get the sponsoring pharmaceutical company and the FDA to approve it just for me. Do I feel special or what? That could take months so short term I am getting three weeks of radiation--it should have to be only three days but because one nodule is close to my heart, they have to do microdoses to avoid injuring my heart. And I am also returning to a Pembro immunotherapy infusion every six weeks. Which I've done before, I got one on my last visit May 12, and they are no big deal. The radiation should blow out those nodules, the immunotherapy keeps my white blood cells alert. And, of course, I am continuing meditation and, at the radiologist's suggestion, am am going in to see the MD Anderson Integrative Health Care team, who are trained in both contemporary medicine and more traditional, holistic practices ,etc. I had been doing acupuncture and will get going on that while I'm here as well. I love it that this young, dapper, super precise radiologist immediately suggested Integrative Health Care as soon I told him I was doing meditation, Reiki, etc.
I start the next round of radiation on tomorrow, Monday, May 22nd and will finish, Friday, June 9. I'm going to be a commuter patient. Memorial Day weekend my cousin Sarah and I will fly from Houston to visit my mother at Spring Bank, the following weekend I'm going to volunteer, as planned, at a river days festival near Cortez, where my brother Tom lives. I'm going to work backstage with the bands!
My medical team is super upbeat, as am I. I came through my first round of radiation in October and November of 2021 with flying colors. I did everything the doctors, and particularly, the nurses told me to do. And also I am super strong. So my new radiology team is confident that I'll do well this time, because it is nothing like what I went through before.
My new radiology team is quite chic, making me up my game. I have to buy some cute shoes.
July 9, I'll go home to Park City and then get ready to head to London for Europe's biggest self publishing conference!! Super psyched! I am meeting friends old and new there and am planning an excursion to the Glastonbury Tor, because it's the heart chakra of the world and sounds really cool to me.
Finally, I went to a hypnotherapist, mainly because (and Sarah, you can stop reading now because it's just too boring for you), of my hip, which continues to plague me. But first the hypnotherapist had to do a past life regression.
So I was a bored, but rich, housewife in San Francisco in the early 1900s, a really happy pioneer kid with a really doting father or uncle or something in Minnesota, but either I died young or my sister did, or maybe a bunch of us died, it was hard to tell, but it was pretty sad, and an Irish peasant married to a really cute guy back before the potato famine. He looked kind of like Jamie in Outlanders! Honest!
In case you have missed that show, here's what he looks like.
and this--I couldn't decide which was better so I thought I'd give you both!
I really hope he turns up in this life and damn soon! I am definitely not interested in the husband with muttonchops whiskers back in San Francisco.