A long overdue update
Wow, it’s been a while! After my last newsletter update in July, I had the intention of just following my UCLA doctor’s and my decision to wait until October to check tumor markers and tumor growth (via neck ultrasound). I planned to take things easy and have a bit of a break from medical stuff.
But when my naturopath recommended I see a trusted osteopath (she had recommended her previously but I balked at spending the money), for access to great natural treatments, as well as pharmaceuticals, I decided to heed the call. I’m so glad I did because I really like her and her staff, and am feeling very well supported.
Non-medically, I signed up for a 200hr yoga teacher training from September to November, so my weekends suddenly got quite full. What was meant to be a quiet three months turned into the busiest months I’ve had in absolute ages. And it’s been so long that I’m fully certified!
Before we get to more cancer stuff, a shoutout to my wonderful Black Dog Yoga teacher training cohort (and teachers!). I’m so glad I signed up when I did, even though the schedule was full-on — this was a phenomenal group of humans.
I would sum up August through now as an absolute whirlwind of yoga, needles, appointments, audiobook listening, and feeling tired (except when I took prednisone recently to kick a lingering head cold and was on top of the energy world! A wonder what diminished inflammation feels like.).
Not everything is awful, but I will say having many days where I feel either woozy, nauseated, brain foggy, tired, lethargic, and/or generally wonky isn’t my favorite. This made me chuckle — he makes brilliantly funny t-shirt designs. Can’t recommend enough.
I have been doing everything-but taking a break on the medical front. Once I met with the osteopath in August, we hit the ground really running. In no particular order, here’s what I’ve been up to:
My October ultrasound showed no growth from July, which is awesome. It was also determined that it’s likely one of the masses (near my esophagus) could possibly be a complex cystic nodule instead, so I don’t hate that! At that time, my tumor measured 4x3x1mm, so, incredibly small. There, but small. The goal with all of my other treatments has been to shrink the tumor fully away.
I had a CT scan in September that showed no visible growth/spread to my torso, so yay! I was supposed to have a PET scan but insurance never got around to approving it, so I just let it go. I’ll go off the CT scan and my intuition that things are clear in my torso.
I am supposed to have a head + neck MRI to check things out, but insurance is putting up a big stink about it. I have rescheduled it four times to give them more time. God help me if insurance pushes it into the new year after my deductible rolls over. I’ve never had an MRI for anything before and it’s absolutely wild to me that a cancer recurrence doesn’t feel like sufficient grounds to have a scan.
I found out I had a candida overgrowth, so we’ve been combatting the persistent bacteria with two pharmaceuticals, a candida specific supplement, a new probiotic, and two rounds of an intense anti-fungal IV.
I added supplements to my regimen to tame inflammation and balance out deficiencies.
I tried and stopped taking a few pharmaceuticals to fight inflammation, however they were making my blood pressure uncomfortably low and I felt awful.
Needles #1: I started doing injections of mistletoe 3x/week (I know, it’s so festive!) as an immunotherapy.
Needles #2: I have done more IVs than I could ever have imagined. Nearly 70 hours of infusions over the last several months. (Here’s why my audiobook listening has gone up 500%. It’s a perfect way to feel engaged in something without the same fall-asleep immediately effect of reading my Kindle, though some days I do that during infusions as well.) The IVs have included:
At home, 14 consecutive days of a candida killing antifungal. Twice. My gut health has always been intricately linked with my cancer and I was thrilled to learn my osteopath has the same hypothesis. Balanced gut health is a true joy.
Mistletoe mali for immunotherapy and mistletoe fraxini for 4 days in a row to induce a fever (fevers are very healing!).
Boswellia, curcumin, and artemesin for combatting inflammation.
Because of the IVs, I spent 5 weeks (2 and then 3 consecutively) with IV catheters in my arms. We had to alternate arms each week. Ryan had to help me Saran Wrap my arm before showers and I discovered that wearing tight clothing and having only one arm free is nearly impossible. I had to wear the little cotton sleeve to keep it protected and stable and I looked like a fancy fruit!
Who wore it best?
Needles #3: I have had countless blood draws for lab work. Checking tumor markers, candida levels, inflammation, you name it.
Because of an interference with one of the medications I started, my tumor markers in October were all out of wack. I check my TSH (thyroid stimulating hormone — indicates the level of thyroid hormone produced) and thyroglobulin (Tg — indicates presence of thyroid tissue which in my case is usually tumor or could become tumor tissue) with UCLA. In October, we expected my TSH to be around 1.0 or less and Tg to be around 1.3. It clocked in with my TSH at 25 and Tg at 7. Weeeee! Clearly something was wrong. I am rechecking these numbers again in a week or so to see if my TSH has evened out. It’s impossible to know if the Tg represents additional tissue growth or something I’m taking is just skewing the results. Time will tell!
I got a second opinion from a molecular oncologist whose office disorganization, lack of respect for my time, and inability to communicate appropriately led me to stop working with him. I appreciated that he pointed out that my cancer seems to be dedifferentiated, which is to say that it has mutated beyond the point of behaving like regular thyroid tissue. This explains why my tumor markers are so incredibly low and only go up a slight bit even with a sizable tumor growth. But beyond that tidbit, it was more a headache than a help. I’ll consider getting a different second opinion at a later date if things seem unmanageable.
My dear friends from yoga set up a GoFundMe to help finance the treatments with my osteopath and beyond. It has been an absolute godsend.
My dear friend, Leslie, did a short, but sweet interview on Instagram Live to talk about the GoFundMe and also give me a chance to share some of the lessons I’ve learned from cancer that I want to pass on to others. Here’s the link if you want to check it out!
The GoFundMe has also allowed me to continue to pursue healing in many other avenues including continued talk therapy, acupuncture (and hypno-acu-therapy!), sound healing, Emotion Code release work, an at-home infrared sauna blanket, and more yoga classes. It is such a gift.
At this point, I’m sure there are more updates to be given — it’s been quite an end to the year, but I’ll save it for another update at another time. I’ve been writing this while watching re-runs of the Great Celebrity Stand Up to Cancer Bake Off, which feels festive and fitting. They often say, “One in two of us will get cancer in our lifetime,” so I always joke to Ryan that statistically he’s in the clear since I’m already holding down the cancer fort.
Until next time!