Mutations, IVs, and tumor markers, oh my!
Happy 2024! Wild to be already nearly a month into the new year. Time truly flies.
I know I’ve said this before, but cancer is so strange in how it changes your relationship to time. Suddenly there is great urgency and also a lot of waiting to see. Waiting for an MRI or scan to be approved, waiting for appointments with new doctors, waiting for follow-up bloodwork. And yet, it’s like YOU DON’T HAVE ANY TIME. DON’T DELAY. DO EVERYTHING YESTERDAY. Nevermind how many hours I spend doing “medical admin.”
The reality is somewhere in between. And the even bigger reality is that the urgency that comes with cancer really should be a shared burden of everyone who is alive. This unknowable countdown is a facet of being mortal, not only applied to those of us with fancy cell mutations. But maybe you didn’t come here today to think about your own inevitable death, perhaps you’re just hoping I’ll get on with my update. :)
First up on the updates: MRI!
After fighting with insurance for three months last year, culminating in insurance denying the request on December 26th (as predicted), I finally had my head/neck MRI! I decided to take the orders to a different imaging center in the new year and it was fully approved, scheduled, and finished in three weeks. It’s such a conflict of interest to have insurance hem and haw about paying for an MRI long enough for my deductible to roll over and now I get to foot the brunt of the bill. What a time to be alive!
MRI, but make it fashion (left). I am absolutely obsessed with this bloomer shorts they gave me. They are made out of that squishy hospital fabric that somehow feels a bit like Necco wafers? They could be kind of cute if they weren’t skin tight or the complimentary color of blood >crying-laughing<. It harkens back to the many years I spent wearing shiny men’s basketball shorts everywhere — the photo on the right is me in 2003ish rocking my usual t-shirt and shorts. Same same but different. Turns out that nothing really changes.
The MRI itself was such an adventure! I’ve never had one before. Mine was at 8:45pm, so it was the perfect before-bed wind down. And by perfect I mean weird, but also far more chill than I expected (I did not have contrast, so no IV woes there). They gave me some lavender aromatherapy even though I’m not claustrophobic, which added to the meditation vibes. Ryan had warned me that it’s quite noisy and honestly nothing could have prepared me for the absolute chaos of the noises. I thought it would be more repetitive, but honestly the sounds seemed to never repeat.
It sounded like an orchestra tuning, but if it were made of rubber chickens. Or if someone sat down repeatedly on a Simon game. At one point I was like, OK now they’ve moved into The Rockefeller Skank era (the song by Fatboy Slim). I’m not entirely convinced the song wasn’t written after one of them had an MRI. Very compelling while you’re laying in a bright, loud tube. At another point the noises changed so dramatically that I nearly burst out laughing. I’m glad I didn’t because it’s possible they’d need to redo the scan, but thank goodness for the weights they put on your head to keep it still (it’s also kind of nice, almost like a weighted blanket for the sides of your face). The experience made me quite grateful for my meditation practice — the practice that has seemingly boundless applications!
My MRI results were released to my MyChart portal, though I have yet to talk to my doctor about it. I’m telling you nevertheless. The attending radiologists found nothing notable in my brain scan and reported two 3-4mm masses in my thyroid bed, which are the two tumors (one possible cyst) that we already knew about. Weeee no distant metastases! All of my metastases are in my neck still! While I trusted my UCLA doctor’s opinions on this, it’s also nice to have a scan because no one really knows.
While in some ways I don’t have any drastic updates since I last wrote, here’s what else has been up, other than the MRI (which honestly wasn’t a big deal, it just had the bet accompanying visuals):
My candida levels are back to normal range so I was able to stop taking several medications that made me feel less than ideal. Helpful for candida, bad for general malaise and low level nausea. I suspected that these medications were interfering with my thyroid pill (hormone replacement which I rely on to keep my body functioning), but I couldn’t be certain. Back in October my levels tested at 25 and 27, and in early January I tested at 30. A reminder that my goal TSH is 0.1, and “normal” people with thyroids are optimally around 2.2. Needless to say, I was feeling pretty awful. Brain fog isn’t just for pregnant women! I had a blood draw two weeks ago and my levels came back at 13, which of course is high, but suggests that my suspicion about the candida meds might be accurate. Hoping for much smaller numbers in my next blood draw, in about a week and a half.
Having no reliable bloodwork to tell me what the state of my tumors are is unsettling, especially for months on end. It’s been an interesting practice in going with the flow. When I feel tired, lethargic, brain foggy, and my hair is falling out (thyroid problems!) AND my tumor markers are way up, it feels like there is nothing to stand on. At least when I’m feeling well I can say, “Who care what my tumor markers are, I feel great!” The irony here is that my cancer being, at least partly, dedifferentiated means the tumor markers don’t fully accurately represent growth, but even still I’ll be glad to have more consistency in my bloodwork again. I welcome the illusion of control.
I received some genetic testing results through a company called Tempus (based in Chicago! heyyy!), which showed that my tumor has a mutation in the BRAF sequence. This basically means the mutated cells are stuck “on,” as you can imagine, especially problematic for a malignant tumor. There is an inhibitor drug (actually a combo of two pills) originally developed for melanoma that has proven to “turn off” the BRAF mutation in some trials. I have a consultation this week with the oncologist at UCLA (not my usual endocrinologist, who doesn’t have access to this treatment option) to talk about the pros and cons of the treatment. My osteopath is eager for me to try it ASAP, but UCLA is often more conservative and I suspect likely to suggest I wait until the disease advances further. I can honestly see it both ways. On one hand it’s like, why spend another day waiting for cancer to grow, and on the other it’s like, if things are quiet right now, why rock the boat? It also means the drugs could be more of a last resort once I’ve exhausted my surgery limits. Which of course is like, if the drugs work then I wouldn’t need surgery. And thus begins the never-ending circle of debate. I’ll know more once I get my questions answered.
Over the next few weeks I have a busy schedule:
This week:
Trying out a place called Kaqun in downtown LA that does oxygenated water baths. It’s supposed to help alkalize your body (also great for workout recovery apparently because it helps counterbalance lactic acid aka soreness). It’s recommended to do 2 weeks x3 baths a day (50 minutes in, 90 minutes in between) for oncology patients, but my goodness who has the time? I don’t even have a traditional job right now and even still that seems like an absolutely enormous time commitment. We’ll see how I feel after my soak! The idea is that cancer loves acidity, so if you can lower the acidity in your body overall, you’re making it inhospitable to cancer cells. Likewise, cancer doesn’t love an abundance of oxygen.
UCLA oncology consultation re: BRAF mutation
Week of Feb 5: Appointment with my nutritionist at Remission Nutrition for the first time in ages. Looking forward to exploring some new recipes, candida-friendly snacks, reinvigorating my appreciation for cooking at home (so I don’t just cave and make grain-free Belgian waffles every time I forget to plan ahead on food), and brainstorming a plan for attending weeklong meditation retreats (where I’d bring my own pre-cooked meals). I’m also eager to look at ways to incorporate/replace some of the supplements I’m taking more via the foods I’m eating, thus taking less pills.
Feb 12-ish: Getting UCLA bloodwork to check my TSH and thyroglobulin tumor markers again. Hoping to see the TSH down even further from 13 and the tumor markers likewise lower. Not sure they’ll make it all the way back to 1.2, which is what they were in September, but anywhere lower than 10 is great at this point.
Week of Feb 12:
Meeting with my naturopath (Chinese medicine) to also discuss my supplement list and address other imbalances in my bloodwork.
Meeting with my endocrinologist to have an ultrasound and get better detail about the size of the tumors in my neck. I moved this up from April just to give us more data to hold onto this year while we “wait and see”
Week of Feb 19: Meeting with my osteopath to address ongoing treatment, discuss the MRI results, discuss the inhibitor drug pros and cons, update her on my supplement changes, and address any other concerns for ongoing treatment.
While I have continued some of my IVs to fight inflammation and stimulate immune responses, I’m going to take a break for a little bit. My veins have been very picky, so I’m taking it as a sign to continue to rest.
Overall I feel tired focusing on wellness all the time. With the new year shifting the energy, I’m eager to find ways to engage in life that aren’t solely related to being well. Everything is related to wellness anyway, but there’s a difference in vibe when I’m doing something I enjoy just for me, vs something that feels more like an obligation (i.g. mistletoe injections 3x week). In the time I would typically do an IV treatment, for instance, I’m going to consider ways I can exercise my creativity. The question lately is “What would my middle school self have done for creative fun if she didn’t think things had to be perfect?” I might just have to try out the adult gymnastics classes I found recently, and maybe in there somewhere is a craft or art project that doesn’t involve a computer? Anyone looking for a cross-stitched something?
As ever, thanks for coming on this journey with me. I’m sure to have more updates soon, but in the meantime, let’s all try to find a little more space for end-goal-less fun and creativity.