Cancer Update: April Check-In

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

How is it already April? That seems just wild. That said, this week has had strong spring cleaning vibes, and the weather in LA has been consistently warmer and less wet, so I welcome it!

I just met with my surgeon for a post-op follow-up yesterday. The appointment was approximately 4 minutes long and she was approximately 12 minutes late. It strikes me as ironic how much waiting cancer patients do when we're over here like MAKE EVERY MINUTE COUNT. On the upside, it was a video call from home, so I was able to read my Kindle in peace, without getting sweaty palms about whether my meter might expire before the doctor arrives (always pay the maximum time!). I recommend Kindle-reading with the least sweaty hands possible for ease of page-turn-clicking and overall stability.

My tumor markers going into surgery had crept up from about 1.3 to 1.8. For reference, I had been at 1.3 for several years after dropping down from 1.4 at some point in 2020. My tumor markers this time were...>drumroll please<... 1.4! Overall glad it's trending downward, though my surgeon (and I) felt ever so slightly disappointed there wasn't a more noticeable drop yet. That said, the tumor markers should continue to drop until they reach a plateau (timing of that is TBD, I assume maybe a couple months?).

So what does this mean?
Well, for starters, it means that the surgery did remove some of the cancer, which of course we knew from the pathology, so that's good. But it also means that it's likely there is other tissue still floating around. The kicker with thyroglobulin is that it doesn't differentiate between benign thyroid tissue or cancer (because the benign tissue could mutate at any point and become cancerous), so there's a chance some of it is just benign tissue. BUT I think it's grossly naive to assume it's not cancerous. And so, 1.4 is 1.4. I have zero clue how much thyroglobulin I had pre-cancer, but I think the range is something like 1.4-40 or some ridiculously huge scale, hah! 0 would mean undetectable, which would mean no cancer present. I don't think it's likely my levels will drop that much. Never say never, but also, I don't think that's how it works.

As far as we know, of 23 lymph nodes removed, 8 had cancer. These were in the left and middle of my neck (your neck has approx. 20 lymph nodes on each side, give or take), so it seems very likely to me that there are some lymph nodes, even nearby, that also have microscopic growth. It's impossible to tell where this is via a scan because of course, it's microscopic, so basically, we wait! The hope is that the lymph nodes are in a place that's easy to find/see. My annual scan is an ultrasound, but with all of the lymph nodes on the left side gone, I'm not sure if there are other scans they might eventually use? It strikes me that eventually the neck-only ultrasound might not give us the whole picture, but I'll defer to the doctors for that.

Didn't you meet with your naturopath today? What did she say?
(if you think Chinese medicine is "hogwash" consider skipping this section for my sanity and yours)
As a matter of fact, I did meet with my oncology naturopath. She would like me to start acupuncture (I'm getting my energy healing from every angle) and she is going to have me take some tumor-unfriendly herbs via an undoubtedly bitter tonic, which I will mix into my tea each day. 

If the tumor markers continue to go down, we'll just stay the course and keep my body as healthy and balanced as possible. If the tumor markers go up or don't drop as much as we would like, she has a few other therapies she recommends, including high-dose IV Vitamin C treatments maybe twice a year. They've actually shown the Vitamin C treatments to be quite effective on microscopic tumor growth. In fact, before she died, my mother-in-law was very interested in it and I remember having conversations about it with her (she also had her own cancer journey) -- who knew I'd be the one considering it now? Efficacy notwithstanding, I believe the treatments are SO expensive. Like, $10k a treatment expensive, so I'm just not so certain I'm that hellbent on living? Hah! I mean, don't get me wrong, I love life and being alive, but I also value not being medical-bill-poor. But the joke might be on me, because I'm basically another surgery from paying that much (gosh, It's not like I haven't spent that much on cancer related things already!), so maybe it's all "six of one, half dozen of the other". The joys of cancer life! Perhaps my tumor markers will continue to steadily go down and I won't need to consider it after all. In the meantime, just focusing on feeling well and finding simple joys since that's all anyone can ever really do anyway.

So is this a good update or a bad update?
It feels like all of the above? Knowing the surgery lowered my tumor markers is great. Whether it's a good update? It depends on your definition of good. I think it's super helpful to know where my tumor markers are at, and I never expected to be cancer-free post surgery, so in that regard, it's great! If you were expecting I'd be cancer-free now, this might come as a bad update after all. Hoping and expecting are two drastically different modes.

But really, it's kind of neutral. A sort of "it is what it is" kind of update. And that seems to be the cancer way really. Chronic cancer anyway. Which ultimately is what so many cancer patients end up in. There's such enormous pressure to be "done" or "finished" or "getting back to normal" when really that's just a storyline other people invent to avoid their own discomfort. I don't personally feel pressure, but I do see how much a young person with cancer really meets people at their edges. As a lifelong teacher's pet devil's advocate thinker, I secretly think this was simply my birthright: that my mere presence would cause people to contemplate their own existence. >cackles at my own ridiculousness<

I love this ^^. Being a human is a trip! I love that cancer has brought this so much to the forefront for me. It has been the perfect invitation away from the academically rigorous and brain-above-all as a mark of intelligence of my school days. I still value intellect and deep philosophical brain holes, but I also see how that was only part of the picture.

I'm leaning into my "weirdness" which is to say, nothing weird at all. (what is weird after all? If you ask this enough the answer is "nothing".) Keep those algorithms guessing!

I'm exploring new yoga and gentle movement classes, energy healing, fluff TV (y'all they did a Too Hot to Handle: Germany. Perfekt mein Deutsch zu üben!), books on rest, on joy, on science, places to visit that feed my soul (looking at you not major metro areas), dance classes, long walks, sewing some new clothes, and it seems repeatedly asking the question "why" like I'm four years old. I've taken "challenging social norms" to the utmost existential level and I'm just sorting through my own version of what that looks like.

I recently switched computers and inexplicably lost all of the bookmarks on my (one) Chrome profile. Easily hundreds of bookmarks no less (very organized mind you. Old habits die hard.). In some ways that's the perfect analogy to what I've been doing with my life. If I excavate past the conditioning that brought me to this point, what does it all look like now? Turns out I don't need the bookmarks where I'm going. Do I know where I'm going? Nope! But working on finding the joy in the exploration.
I wish you joy in your own exploration!

Oh right, you came for cancer updates and I took you down the full existential rabbit hole. Let me bring it back.

Next tumor marker check: July

Don't die of curiosity in the meantime. Welcome to cancer 101, where the bloodwork is frequent, but somehow also not frequent enough.

Hoping it's below 1.3 because that would be my PR TG (thyroglobulin) level! This might be my most ambitious PR ever, over hitting three home runs in one high school softball game.

I'll probably send an update in July once I get my tumor markers back/next steps, but after that it might be overkill to keep you all looped in for every tumor marker check (every 3 months forever and everrrrr). So we'll see what feels like a major update and maybe stick to that. :) We'll all feel it out in July.

In the meantime, are there questions I haven't answered? What else should I include in my next update?

Below is a requisite scar selfie that I just took for the purposes of this email, hah! But really my scar looks so good. It even looks more pronounced in this photo than it does day-to-day, so as you can imagine, it's going well. I just have a little expected scar tissue puff and my range of motion is getting better and better. I might even start softball again in two weeks! Just bought some silicone scar strips, so in my July update, maybe we'll play "spot that scar!"

Thank you all so much for being here and supporting me! I appreciate everyone's well wishes, prayers, love, and rallying energy. Thank you for the cards and notes and good vibes and puzzles and love.

Until July! 
xoxo
Julia