For the past four years, it’s been my habit to share an update on Facebook after each chemo infusion or other treatment. And then this past November I sort of hit a wall. I didn’t mean to quit updating, I just fell behind and couldn’t catch up, and the next thing I knew, 11 weeks had gone by.
In mid-January, I finally posted an update covering most of the major happenings from the fall and early winter. For those of you who don’t follow me on Facebook, I copied that post over here on substack (an email didn’t go out with it, but you can find it here).
That was just two weeks ago, and yet it feels like a lot has happened since then. I’ve broken things down in today’s lengthy update, to try to make for easy reading (and skimmable, too). At the end of each little section, I’m adding one thing I hope for in terms of whatever prayers, warm thoughts, good vibes, or positive intentions any of you might be inclined to send my way.
Steroids
On January 19, I met via Zoom with my fabulous physical medicine & rehabilitation (PM&R) doctor, Dr. Sean Smith. I had only just begun to realize that it was pain, and not merely weakness or lack of function, that was keeping me from making additional progress with my walking. Thinking that perhaps inflammation was to blame, Dr. Smith prescribed a short course of high dose steroids.
I was worried about going on the steroids, as any dose seems to give me terrible insomnia, and this dose was higher than anything I’ve ever been given as part of my chemo regimens. But after a single day on these steroids, I could not have cared less about insomnia, because for the first time in five months, I was living almost entirely pain-free.
My gait improved immediately. One morning, I accidentally walked out of the kitchen without my cane, without realizing it, and then when I did realize it, I just kept on going. Rob and Paul saw me and both said my gait was the best they’d seen. When I went to physical therapy, my physical therapist could immediately tell the difference in my gait.
It was all amazing. Especially the part about no pain. All this time, I’d been comparing my pain level to what I’d lived with in September, which was excruciating pain every day and every night. I was so grateful not to be living with that level of pain that it never even occurred to me that I was still living with too much pain. I just adjusted my life around it. But five days on steroids opened my eyes to what could be possible if I didn’t have to adjust so much.
The hope was that the benefit would last beyond the five days on steroids. The problem is that it didn’t. Within two days, I was back to my usual level of pain and the usual way that pain impedes my ability to walk. I reported back to Dr. Smith’s nurse on Tuesday, and yesterday I received a message from him that he thinks a steroid injection to my hip joint will help, especially after reviewing my recent MRIs. One of his colleagues will be performing it with ultrasound guidance. I’m very hopeful this can be scheduled soon!
My hope: that the steroid injection happens soon and that it works as well as the oral steroids did, but for much longer.
St. Louis
Last week, I went to St. Louis to meet with the radiation oncology team at Washington University and to have my radiation simulation scans (usually referred to as “sims”).
I was only gone for 36 hours - 16 hours of driving for 6 hours of medical appointments - and it was totally worth it. Doing the sims involves having a mold made of my body (so I can be in the exact same position every time I’m on the radiation table), then being in the CT machine for imaging, then being in the MRI machine for imaging. Like before, I will be getting radiation on the MRI-guided machine, a piece of equipment that was actually invented by a physicist at WashU.
I adore my WashU radiation oncologist, Dr. Spraker. After finishing up with all the procedures involved in the sims, he spent another hour-and-a-half with me, walking me through all my recent scans, discussing some of the details of radiation I was particularly interested in (like “motion management,” which was one of the differences between the U-M plan and the WashU plan), and answering any and every question I had. He even showed me the video of my MRI sim - I could see how my liver moved when I breathed, and how they will target exactly where the tumors are.
I’m tentatively scheduled to have five radiation treatments starting on February 14th. The only problem is … my insurance is denying the preauthorization for this treatment. They say this targeted form of radiation (SBRT) isn’t medically necessary and a different kind of radiation can be done instead. Never mind that expert doctors at two different top-notch hospitals have determined that SBRT is medically necessary and is my best treatment option right now. Never mind that these two doctors have actually seen me, the patient, and the doctors working for the insurance company have not. Never mind that Dr. Spraker has expertise treating patients with sarcoma, which the insurance company doctors almost surely do not.
Dr. Spraker’s team has been working through the various levels of appealing this. We’re now at the final level, and if it is still denied, I will have to ask for an external review by the Michigan state government department that oversees insurance matters. This will delay my treatment, so I’m really hoping it doesn’t come to this. It is nerve-wracking to be at this point. It’s galling, too - I have a lot of things to say about insurance companies overriding what doctors determine is medically necessary for their patients - but I will save that for another day.
I have to give a big shout-out to my sweet friend Lucy for taking this trip with me! It was such a gift to me, and I treasured the time we had together. Thank you, friend.
My hope: that my insurance company will authorize the radiation treatment plan my expert doctor has put together, so I can get treated as planned starting February 14th, and that it will work to kill the two largest tumors that have been steadily growing in my liver.
Other Stuff: Boosted
The day I left for St. Louis, I was exactly five months out from my third dose of the vaccine. For immunocompromised folks like me, a third dose is considered part of our primary series of shots, not a booster. To be going through the Omicron surge without being boosted was unsettling. I tried to get my booster before leaving for St. Louis, since I wouldn’t be able to get it that day, but I was turned away. I was finally able to get an appointment for three days after I returned. Phew!
(If it’s been five months or more since your last dose of the vaccine, it’s time for you to get boosted, too!)
Other Stuff: Chemo
After all the other medical appointments I’ve had lately, I almost forgot it was time for me to have chemo again. Okay, I didn’t really almost forget. I just would like to forget. But January 31 rolled around, and it was time for me to get hooked back up.
This is my 5th cycle of this particular regimen, my 43rd chemo infusion, and my 53rd cycle of systemic treatment. Four years of cancer treatment is a lot. It’s exhausting to think about, but it’s also what’s keeping me alive, so I’m grateful. I hope I can do it for four more years. And then for four more years after that. And so on.
I got hooked up Monday afternoon, came home with my infusion pump in my fanny pack, and then went back Tuesday afternoon to get unhooked. Everything went smoothly. It’s still surprising to me that I can stay hooked up to my chemo all night and just go to sleep in my own bed like this is the most normal thing in the world. Thank you, science, for all that you make possible!
Now I hope the medicine is doing its good work. In three weeks (the week after I have radiation), I’ll be having a PET scan (my first PET since late 2018) (if the insurance approves it, of course) to more fully assess my response to this chemo and to get a better look at what’s happening in my bones. I’m a little nervous about that scan. I really, really want this chemo to work well for me.
My hope: that the chemo is working to control my disease, and that it will do so for a long time.
Thank you for reading this long update - I will try not to always write so much! - and thank you for rooting for me. I so appreciate the support, the kind concern, and the love.
If the insurance doesn't go as planned, I'm sure there are plenty of us in your life that have zero problem with pitching in...JUST KNOW THAT!
Much Love to You!
Sharing all your hopes, Stacey❤️