Full Cancer Timeline
Here’s a great place to get allll the details about timing from day 1. This is updated regularly to reflect the latest news.
Whether this a recap or your first time knowing the basics, I thought I'd lay it out in a (quite detailed) timeline:
April 2018: I go to the doctor with a swollen thyroid. We did blood work and it's passed off as "probably nothing", after all goiter is fairly common. My thyroid TSH levels were high (which in retrospect can stimulate cancer growth when cancer is present), but we said we would just monitor it.
July 2018: Just after my mother-in-law's funeral, I get really sick and have quite swollen glands. While massaging my neck, I realize there's a lump in my neck that I don't remember having. I make an appointment with an endocrinologist (who even knew what endocrinologists fully did anyway?), but being a new patient my appt isn't until Oct 1. It doesn't occur to me that I should say "Um I have a lump in my neck" to hurry it along.
Oct 1: First appointment with endocrinologist, she confirms the lump and orders a fine needle aspiration biopsy. This is when I first start telling immediate family and work that I think I have cancer.
Middle Oct 2018: Fresh off a visit to my twin on the east coast, I have a fine needle aspiration (FNA) which involves, you guessed it, fine needles! It's just topical anesthesia and it's not the most comfortable procedure I've ever had. 8/10 don't recommend.
End Oct 2018: Have an appt with my endo who confirms "Welll, it's not the results we were hoping for." But of course with a hard lump in my neck that caused me mild to moderate discomfort, it was never going to be benign. But I digress.
Nov. 30, 2018: Full thyroid- and lumpectomy. Find out the hard way I can't take hydrocodone. Overdo it on my calcium supplements (following doctors orders) and feel groggy (who knew that was a symptom of too much calcium?). Even two weeks later when my stitches have dissolved, my scar already looks amazingly small.
I start taking Levothyroxine to replace my thyroid. I might be at the right dosage now, but it's been a constant struggle to find the right level. It seems my body loves to fluctuate wildly. They (western medicine) keeps me on a purposefully increased level to make my TSH low (it's an inverse correlation). This suppression dose is supposed to discourage thyroid tissue growth.
January 2019: Radioiodine treatment. I swallow a radioactive pill at the hospital, drive myself home, and quarantine in our "guest wing" where I have my own bathroom. I stay there for four days while I'm radioactive, at which point I could come out and keep my distance from Ryan. Definitely thought that would be my last quarantine. Woooo boy. I have a scan post iodine to see if the remaining cancer tissue uptook any of the radiation, and it's hard to tell. Mostly inconclusive. Overall the radioiodine lowered my white blood cell count (think immunocompromised), increased my lifetime exposure to radiation an obscene amount, and that's about it.
January 2019: I start working with a recommended oncology naturopath and onc. nutritionist who help me heal my egregious leaky gut and IBS. I feel better than I've ever felt in my whole life. I ride this high until lockdown in LA ends, after which point I've been somewhat out of balance.
August/September 2022: I shift pharmacies because of my insurance and switch manufacturer's of levothyroxine. I end up with a bunch of uncomfortable symptoms and switch back again. I have more labs than usual and my TSH levels stay the same, but my thyroglobulin tumor markers go up a little. We move my ultrasound from February to October, which ends up getting pushed to December 1 because my doctor gets sick.
Dec 2022: Ultrasounds and another FNA biopsy confirm it's the same cancer. This FNA was light years more comfortable than my first, wee! Things are coming up needles!
Feb 2023: Valentine's Day surgery! Opted for no narcotics and it was a brilliant decision. I felt so good after surgery that I took an extra-long walk with the nurse at 3am, and I'm not going to toot my own horn, but they were impressed by how much water I drank.
April 2023: Checked tumor markers and found they were lower than pre-surgery, but slightly higher than they were for years while things were not growing rapidly.
July 2023: Checked tumor markers again to find they only decreased 0.1 (which is not a lot, in fact it's technically the margin of error of the blood test). An ultrasound confirmed two new masses. 10/10 don't recommend getting an ultrasound wand pressed repeatedly over a tumor, it's very uncomfortable.
August 2023: Start working with osteopath recommended by my naturopath and try all manner of alternative treatments to lower my inflammation, stop the cancer growth, and keep the stress responses in my body as quiet as possible. Suddenly everything involves needles: injections, acupuncture, 2-weeks of IV infusions, bloodwork, you name it!
Oct 2023: Get a second opinion from an independent (not UCLA) oncologist who feels my disease is dedifferentiated, meaning it’s hard to track with thyroglobulin (which is how we’ve been tracking it), so we run every DNA profile, peptide sequence, cancer profile, and scan we can do to get more info as to how my cancer behaves.
And here we are :)