Cancer Update #2: One week until surgery!

Please note, this language was adapted from an email, so please pardon if there are any lingering email references.

Thank you all so much for your support and well wishes. It means so much! There are some people on the list here who didn't receive the first email, so I am leaving the Ways To Support + FAQ + background info sections as is, otherwise just check out the "what's next" section for new updates.

One week until surgery!

I will find out my "call time" on the 13th, though I have done my pre-op physical, several pre-op check-in appointments and paid my deposit, so all systems are pretty much go. My surgeon said the procedure will take approximately 1 hour. I'm having a left modified radical neck dissection. Lolz. So fancy, and gross for those squeamish. Don't think too hard about it.

WHAT CAN I EXPECT FROM MY RECOVERY?
If all goes to plan, I will be in the hospital overnight to monitor my vitals and make sure the incision is healthy. I will have stitches, though not sure how many. Last time my incision was about 2-2.5" across. Unsure what to expect this time.

I anticipate pain the first full day back from the hospital, which I'll take Tylenol for. Beyond that, I'm hoping days 3-4 and beyond are all pretty minimal discomfort, relatively speaking, as my stitches heal. I'm encouraged to move my head as normally as possible, gently of course, to ensure it's healing with maximum range of motion. I'll be mostly lying around on the couch or doing puzzles for about two weeks. I do plan to resume leisurely walks outdoors once I'm allowed to shower/bathe.

I'll have stitches for just about two weeks, at which point I'll have an appointment with my surgeon to make sure everything healed well and get the pathology results. I'm cleared to do as much physical activity as my body allows me, about three weeks after surgery. I'm hoping to get back on my yoga mat ASAP, though of course taking things very slow. I love gentle movement, so that sounds like a treat. That said, they are, casually, "moving my muscle out of the way" so my neck muscle will be undoubtedly sore for quite a while after. I anticipate a very-strained-muscle experience, though only time will tell. Hoping to get back to softball for the spring season, but my neck muscle will have the final say in that.

WHAT ARE THE RISKS OF SURGERY?
It's possible for them to damage any number of things, but they aren't much worried about my blood vessels, despite the proximity to my tumor. I'll just lean into their confidence there. Other risks include a lymph sac injury that would lead to major fluid issues requiring a drain (hence staying overnight to monitor), damage to my vocal cords (though the surgery is further to the left than most of my vocal cords this time), and damage to my vagus nerve (though they said it's quite hearty and they aren't too concerned). There's always the possibility of an adverse affect of the anesthesia, but having had my first surgery with no anesthesia issues, that bodes well. Death of course is a possibility, but then, I like to live my life as though death is always a possibility, so this doesn't rattle me very much. Plus I'll be knocked out for it, so I wouldn't know!

WHAT COMES NEXT?
It all depends on what the pathology shows and where my tumor markers are after surgery. If they drop a lot, it means a majority of the growth was in this tumor and other removed lymph nodes, which would be great. If my tumor markers don't drop a lot, my surgeon, endocrinologist, and I will all have a meeting to discuss. The pathology should show the same cell make-up as the first time (20% aggressive cells), so I will be most curious about how many lymph nodes are removed and how many show growth. In my first surgery, 5 were removed with 3 having some growth. More on lymph nodes in futures updates.

WHAT HAVE I BEEN UP TO?
You lovely people have sent me puzzles and plenty of emails to keep me busy! Between dealing with insurance claims, booking more doctor's appointments for the rest of the year to take advantage of banging out my deductible so early, and other personal admin, I feel like I've been busy as ever. I batch cooked a bunch of food yesterday to freeze to make for easy consumption while I'm recovering (of course Ryan will cook all the time as he does already, but just trying to make a dent in his caregiving load). Not exactly what I had in mind for a peaceful two weeks before surgery, but it's all been good. My intention post surgery is to keep my schedule at a bare minimum until at least April.

I've been really savoring the small moments of ease and joy (that's all there really is, isn't there?). I've been reassessing whether everything in my life aligns with what matters most to me, just as I've done periodically over the last four years. Cancer (and mortality) have the unique clarifying ability to help crystalize what matters and what doesn't. It's an interesting invitation to be sure I'm really spending my time in a way that matters to me. Of course, those who've known me for a while know I'm always on about intentional living, but I really mean it. There's no sense in spending your singular, precious life doing something that doesn't matter to you.

Thanks for being here! If you already received Cancer Update #1, everything below is a repeat for you. If you're just joining, check out the Ways to Support, FAQ, and Background Info for helpful info!

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, Pop's Bagels, 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.
(and remember, the rest of this email is a copy from the first cancer update, so no need to keep reading if you've already been here before!)

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.

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.