I always doubted my diagnosis. Ever since two days after my diagnosis a doctor who knew anaplastic thyroid cancer--which the doctors at Mount Sinai did not, I was the first case they had ever seen--told me he doubted the diagnosis.
Well. I am now back home in Park City after two days of tests at MD Anderson. The Car T cell treatment I underwent in February and March failed. The reason? I am probably anaplastic thyroid cancer free! I probably have been since November of 2021 when I completed that regimen of two surgeries, chemo and radiation. Or perhaps the first Car T cell treatment blew it out of me in November and December of 2022. My endocrinologist just doesn't know.
This explains a LOT, starting with the fact that I have been completely asymptomatic since the diagnosis. People are always saying "feel better," and I'm always saying, often somewhat impatiently , "I feel fine!" I have had side affects from treatments--very limited--but ATC symptoms? Zero.
A little background here. In January, my endocrinologist did tell me that most if not all of the nodules in my lungs that first showed up in August of 2022 and qualified me for Car T cell treatment were this much more treatable and far less aggressive form of cancer, which for simplicity's sake she and I are calling non-anaplastic thyroid cancer. She and I and one her associates had a few conversations about it that January day. "Will the Car T cell treatment work on this non-anaplastic thyroid cancer?" I asked the associate.
"We don't know," she said. Or something like that. Well, now we do!
You have to remember, anaplastic thyroid cancer is extremely rare. Car T cell and the other treatments we're doing are brand new. So, while it does appear that I went through chemo, immunotherapy, 12 days in the hospital and five weeks in flat Houston while snow was dumping in Park City for naught, that's just how it is. And what they learn from me will benefit others, just as what they learned from others benefited me.
I do still have a non-anaplastic thyroid cancer, one that is much less aggressive and also easier to treat. And cure.
And my endocrinologist calls that fact "great" news. And I will take that!
Of course I would have liked to have been totally disease free right now. Because I want my fucking life back. And I am going to get it back completely. I am going to be one of those folks who just goes to MD Anderson once a year for a checkup and just to see people I really admire and enjoy. Also, dealing with this can be mother-fucking hard and emotionally exhausting. 'Your heart chakra is saying, 'I've had enough of this,'' my Reiki healer recently told me. 'Your heart chakra wants a break." So I am giving that to her and to my inner child.
I learned a lot about my inner child from the host of The HEAL podcast, when she interviewed me a couple weeks ago. It's good for everyone to know, but I think it's even more important for women to acknowledge it and honor it.
Overall, I am actually pretty happy with this. All along a part of me has known that I am going to be fine. But I have also known that the timetable is not in my hands--it's in the Universe or God's hands or whatever language you want to use to describe this unknowable force that I feel but don't pretend to understand.
My endocrinologist and I had a long talk before I left Houston yesterday. She knows I meditate, feel in tune with my body and she respects that and actually told a new PA who sat in our meeting that and increasing amount of research shows mindset and belief have a big impact on how cancer patients do. See this Stanford study for an idea of what she's talking about.
Here is the deal. Something felt out of whack over the last few weeks. WhenI was trying to envision my warrior goddess white blood cells killing rogue cells, it didn't feel in sync the way it had in the past. Like, during radiation, it felt totally in sync. I'd envision my cells welcoming radiation cells and running around my body, laughing and holding hands, taking out any rogue cells.
I kept trying to envision my warrior goddess white blood cells on attack. But a different image, one based on my continual failed efforts to grow flowers under maple trees when I lived in New York, kept popping up. I would plant flowers under the maple in my back yard and they would disappear with amazing speed. It was as though an invisible hand had reached up and sucked the flowers out. I made a few phone calls to some gardening and tree friends and it's because the maple just sucks all those nutrients out of the soil--and the plants. They just can't survive in that environment.
And I kept having that image of that was what was happening in my body. Now in Dr. Jeffery Rediger's excellent book, Cured: Strengthen Your Immune System And Heal Your Life, I learned about a guy named Antoine Bechamp. He was a contemporary of Louis Pasteur whose germ theory set the ball rolling for the "kill the germ at all costs" approach to medicine that still pretty dominates today. Bechamp was one of the first to talk about what we now call the microbiome. He focused on what he called the "inner terrain" of the body. Having a healthy terrain means germs don't have a chance. Now cancer is not a germ, it is a rogue cell. Obviously, I'm still working on making my somewhat muddied thoughts on this clear but I hope you get the gist of what I'm saying. And that is, making my body an environment in which the non-anaplastic thyroid cancer doesn't have a chance and just withers and dies because it just can't live in the environment of my wonderful body. It just withers and dies because what it needs just ain't there, it's all going toward powering a healthy me!
MD Anderson does, of course, have a treatment plan for the non-anaplastic thyroid cancer. and I will, as always, follow it carefully. And, I will also continue my own holistic and complementary practices, which MD Anderson fully endorses. And the MD Anderson plan is also a plan that works on environment of my body. We work together well.
Now, dealing with cancer is not just about doing what the doctors say as well as meditating, doing Reiki and acupuncture, eating well, exercising, getting enough rest, etc. It's also about being true to yourself--even when you being the real you pisses off people you respect and care about. That means drawing boundaries. Which, as all of my baby boomer friends know well, is so hard for us boomers to do, especially we women! (Us women? Nadine? Mary? Help!)
Being true to yourself, saying what you feel, clearly stating your desires and needs and drawing boundaries between ourselves and people who treat us in ways we do not like, keeps us healthy, just like eating broccoli. Or whatever veg it is that you like. Me, I'm into broccoli! And boundaries.
Honestly expressing ourselves is particularly important for women. This is an excellent article about women who self-silence and appease. I was definitely one of them but I am not alone. I'm stilling breaking out of it but at least I know it. It is a systemic problem.
Here's how it's shown up in my life. I have had multiple health challenges throughout my life and the outcome, as I look back, seems tied to what's going on in my life in general.
In the 1990s I had a big dense parotid tumor removed from my neck. It was benign, the Mayo surgeon who removed it told me afterwards. "Keep an on your neck though, they can come back and they don't stay benign. They can be very, very dangerous,"he said. At that point in my life I was a globetrotting reporter with a great friend group and a boyfriend who cherished me. There was only outcome my body would allow: I was fine. Fast forward a few years. Marriage is starting to fall apart, I have the worst job of my life with the South African Tourist Board with a terrible, terrible boss. And I got melanoma. It was fine, I dealt with it promptly , it never came back, but it was an indicator of how what's happening in my life impacts my health that I didn't notice until recently. I have lots more examples like that, but I'll spare you. And they're in the book, too, which so many of you have been kind enough to read
So, I am cleaning out my body and my life!
And damn, if my hip, which has been keeping me from running for two years now, does not feel better! Hips are where your relationships lie, a few yoga instructors have told me. I even ran a little yesterday! You know, jog a little, walk a lot.
And P.S. I just got back from my Thursday morning Park City Sunrise Rotary meeting, which sponsors the Park City Shotski. It's a blast. I've already started working on my daughters to see if they want to volunteer. It's October 12.
And, here is my view this morning. The mountains heal me, too.
