Cancer Update #1: Welcome Back, Cancer
Please note, this language was adapted from an email, so please pardon if there are any lingering email references.
Having a recurrence of cancer is a funny thing because some of you here only just found out I have cancer at all, and for others it's been a 4 year reality. My goal is to include as much info as possible so whether you've been kept apprised from day 1 in 2018 or you're just getting caught up now, I might answer your questions here.
Please feel free to still ask me questions. The most pertinent update is in the "what's next" section and everything else is take-or-leave based on your interest. The sections are: What's Next, FAQ, Ways To Support Me, Background Info (timeline), and then Tech Notes. Scroll to where you want to read, ignore the rest.
Now on to the updates!
I just had my surgical consultation today (the 4th), with the same surgeon who did my original thyroidectomy in 2018. She's great! For those of you who have seen my scar -- or maybe you haven't because it's so well healed -- you'll know she is quite skilled.
Surgery is scheduled for Tuesday, Feb. 14th, 2023!
A very romantic holiday indeed. Though I suppose the best Valentine's gift I can give Ryan is to be cancer-free (or just have less cancer)? I'm jazzed to have it on the calendar finally (my first ultrasound this recurrence was December 1) and can plug ahead on logistics. I'll be isolating ahead of surgery to avoid getting sick, and I'm avoiding any physical activity other than yoga to avoid any injuries.
Even though it's not for 6 weeks, I'm taking some time off of work (I work for myself, so this was quite simple). There's a beauty in having a wide-open schedule. I'm going to spend my time cooking, reading, napping, doing puzzles, writing, doing yoga, and going on long walks.
My plan is to send another update around surgery time, possibly a quick note before, but definitely a note ASAP post-surgery to let you all know how it went. I will have Ryan send out an update if anything goes awry during surgery. I have confidence in my surgeon and don't think this will be the case, but it's naive not to go in with a plan.
I appreciate all of your wonderful support and well wishes! Thank you for being here for us (Ryan and me!), it is so appreciated. <3 Read on to learn more background info, but prepare for the deluge of information -- I let my information hoarding side run wild!
What kind of cancer do you have?
Papillary thyroid carcinoma (my thyroid cells mutated)
Where is this new tumor?
In my neck, close to my clavicle, tucked behind my neck muscle, and snuggled right in between my jugular vein and carotid artery. I referred to it as sneaky like a spider -- it picked the optimal location for coopting my blood vessels to grow! (that's what tumors do) Very clever cancer cells. Very clever.
What stage is it?
Stage 1. But the joke's on me because staging is slightly different with thyroid cancer in people under 45 years old. There are only Stage 1 and Stage 2. Compared to the "regular" staging scale, I'm more like a Stage 2 because I had lymph node involvement that was isolated to my neck, as far as we can tell. There's no way for us to be certain it hasn't spread elsewhere other than just to wait and see. Fun stuff!
How big is your tumor?
7mm this time! My last tumor was 1.7cm and I had 3 of 5 lymph nodes removed with small growths as well
Are there other kinds of thyroid cancers?
Yes! There are three types, mine is typically considered the most mild, except that mine was more aggressive than normal. My original pathology showed that 10% (or it is 20%? Funny what seems so important and yet now I've forgotten) of the cells are "tall cells", also known as scary, aggressive cells. This is very unusual in cases other than cases of men over age 70, lol. Congrats to my overachieving cancer cells! I'm taking old soul to a whole new level.
Isn't a recurrence just a continuation? It seems like a misnomer.
Yep! I was never considered in remission or cancer-free, we simply didn't know where the remaining tissue was hanging out (that the radioiodine never killed off). We hoped I wouldn't have a recurrence, but because of the aggressive nature of the cells, my chance of recurrence was always higher. Most people have a recurrence within 5 years, and mine was 4 years almost to the day.
When were you originally diagnosed?
2018, when I was 29 years old. I have a VERY detailed timeline below that you can check out!
How do you keep tabs on your cancer?
I get bloodwork every 3 months to check my thyroglobulin tumor markers. When they go up, it indicates growth.
Once a year I get a thyroid ultrasound to check for new growth. I'm lucky my cancer scans don't involve radiation like. for instance, a PET scan, which more easily causes secondary cancers. It feels brutally ironic.
What treatment options do you have?
Surgery to remove the lump(s). There is a lifetime limit to how many surgeries you can have in one area on your body because of scar tissue, so the choice to operate has to be thoughtful. It's the most thorough in that, you know you've removed the whole tumor.
Ablation: I don't know a ton about this, but I believe it involves injecting a radioactive alcohol solution into the tumor to dissolve it. I'm not certain, but my guess is this leaves a greater chance of leftover tissue
Beam radiation: If my disease spreads a lot and surgery isn't possible, they sometimes use beam radiation for advanced thyroid cancers
Radioactive iodine: A radioactive iodine pill that you swallow. Thyroids are what process iodine, hence why it's iodine! The idea is that remaining thyroid tissue will try to process the iodine and die off. It seems to have very mixed results. Some people it helps a lot and many others report it basically being pointless (this is also me).
What about chemo?
As far as I've been told and I understand, there are no chemo treatments for my thyroid cancer. On one hand this is great because chemo is a BEAST, but on the other hand, the thorough kill-the-microscopic-cells ability of chemo is appealing.
What happens if you have more recurrences in the future?
As it stands now, I will be mostly waiting to see if more tumors grow and then deciding between surgery and ablations. Normally we would leave the tumor to grow to be about 2cm before operating, but because this one is so close to my blood vessels, it not only means it has a lot of "food" to grow, but it also means that the cancer cells have an easy on-ramp to the super highway that is my circulatory syste,. This would make body-wide spread much simpler. Hence, we want to operate soon and get rid of it.
It's possible that I will not have more recurrences, but I have a sneaking suspicion that would be naive to think. I do hope they would at least be a little more spread out in the future, but all I can do is wait.
Is it possible you have other tumors right now?
Yep! More fun stuff. Unless it shows up on my ultrasound, we don't really know about it (other than my thyroglobulin suggesting there is growth we can't see). We just wait until it grows large enough to see it and then take it case by case.
UPDATE OCT 2023: My beautiful yoga friends have started a GoFundMe (link here) to help support Ryan and I while I take a much longer break from work than I ever anticipated. Even if you can’t or don’t donate, please share!
So many people have been asking how they can support me (and also Ryan!), so I'm making a list. I truly believe being the spouse of a cancer patient is far more stressful than being the patient.
I do want to express that by no means do you have to do or give anything at all. I simply appreciate your well wishes and support. I am not asking for anything at all, but if you're wanting to give something more tangible or gift giving is your love language, here are some ideas!
Send love! I really believe in the power of energy and vibes, so any form of love, reiki, prayers, whatever is natural for you is welcome. Not mandatory, just greatly appreciated.
Other kinds of gifts: I do love jigsaw puzzles and snail mail! But beyond that, I'm not much of a gift person. We have plenty of mugs, blankets, teas, cute cuddly pillows, board games, and candles, you name it. I'd be totally more interested in Zoom tea dates or online MarioParty's with you all!
Experiences! Experiences > gifts. And I love when people do things they love doing. If there's something you love doing, go do it in my honor! There's no better antidote to cancer than living well. Treat yourself! (and then tell me about it, I'd love to hear about something that brings you joy!)
Food gift cards: this is probably easier than cooking for us because I eat modified Autoimmune Paleo also called AIP (remember my terrible IBS? Me neither! Wocka wocka.). Some places Ryan and I both enjoy (and several only Ryan can have): Alfalfa (salad place in Santa Monica), Sweetgreen, Bludso's BBQ, Natalee Thai, Sunny Blue (onigiri), Sugarfish, Ralphs (grocery store), Whole Foods, ChowNow/UberEats/Grubhub, HiHo, Shake Shack, In N Out, Tacos Por Favor, Milo + Olive, Jon + Vinny's. If you'd rather just send $ to be put towards food, Venmo @julia-decaneva or Zelle at julia.decaneva@gmail.com.
Make a donation in my honor. Ryan and I had the pleasure of participating in a Breathe Now retreat from Dear Jack Foundation in March 2022 and we had such a wonderful time. If you donate to Dear Jack Foundation, you'll be supporting other Young Adult Cancer patients and thrivers in care packages and more retreats. You can also support YASU or First Descents - Outdoor Programming for AYAs who provide great programming for YA cancer people as well!
Other gift cards: I will shamelessly say I love getting massages and would never turn down the chance to get a massage (post surgery clearance of course). I enjoy going to Milk + Honey and Burke Williams.
Logistics: I might need help with logistics post-op, but I'll put out a bat signal if that's the case. Chemo is usually the more appointment-heavy cancer vibe, so I'm hoping to keep my appointments at a minimum :)
Hug your people! Cancer has that clarifying power to encourage a life built only on what matters. And I think people matter. So please hug your people. Tell your friends you love them (if you do anyway).
Sunsets! I love sunsets. Watch a sunset near you and savor it. Don't rush it. Let your problems melt away. And feel free to send photos. :)
Above all, and this goes for any patient you know, don't feel like you have to treat me differently. You'll never accidentally remind me I have cancer (trust me, I haven't forgotten!) and I also don't get burned out talking about it (this newsletter helps!), and I still love all the same things I did before my cells got wild. If we usually talk about sports, the human condition, philosophy, psychology, etc, I'm still interested in talking about those things. If you never mention cancer, I won't think you're trying to dodge the subject, sometimes there's simply nothing to be said about it. I feel emotionally, mentally, and physically resilient and strong. Cancer has been part of my everyday for four years, so this recurrence doesn't change much in my world -- it seems to effect everyone else even more honestly.
I appreciate you! Even reading a sentence of this email is an act of care, so please don't feel obligated to do anything other than be present and be yourself.
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!
And here we are :) You're reading this ridiculously long update! Cancer is nothing if not an absolute time suck. But it also makes you appreciate each moment, so it's a bit of a paradox.