Cancer Scare(ier)

Two years ago when I was getting multiple biopsies to try to ascertain whether or not I had cancer in my neck, I wasn't that fussed about it. Either I did or I didn't, and if I did, then it was a simple matter of removing it surgically and maybe having some targeted iodine radiation if it looked like it had spread.

I was confident in my care team and just didn't think about it too much.

About a year after my surgery, my endocrinologist ordered a follow-up DEXA scan (to make sure my post-surgery efforts were indeed regrowing bone) and a neck ultrasound (to make sure everything was out). I told her that I simply could not afford imaging since we lost our health insurance. She understood.

I spoke with her for the second time since my surgery this week, and she said she was aware that I was unable to get imaging, but that there is also one lab that she's ordered twice and that I have not gotten since my thyroid was removed two years ago.

The reason I haven't had this test done is semi-complicated. She is sending lab requests to Quest but because I don't have insurance and instead pay out of pocket for my labs, I actually have to use a third party company (Ulta Labs). I go to their site, find the tests she wants me to have done, and buy them myself so that by the time I show up for the blood draw (Quest only charges Ulta $12 for this, and I can't see how they stay afloat!), everything's already paid for.

The issue here is two-fold: 1) The tests on the website aren't always called exactly what the doctor calls them. 2) Me. I'm the other problem. I'm not a medical professional so I'm trying to read the description of the tests and match them as closely as possible to what she wants. Stuff like a CBC with differential or a lipid panel is pretty straightforward. But is free T4 different than T4? I... don't know the answer to that and it seems like I should be an expert by now!

So... I haven't had a thyroglobulin test since my surgery. I've had several thyroglobulin antibody tests, and those have been negative (which is great; I shouldn't have Hashimoto's if I don't have a thyroid!). I thought that those tests meant we were in the clear. But no. She said neck ultrasound and thyroglobulin levels are how she makes sure we don't have a recurrence of cancer.

I finally understood and paid for the test she's been wanting all of this time. I had it done yesterday.

I'm pretty sure I'm fine, but the thought that I could have "persistent papillary thyroid cancer" (which happens in 10-30% of papillary thyroid cancer patients) hits different than it did the first time for one single reason: We no longer have health insurance.

James got laid off 5 days before my surgery in May 2024, but our coverage extended into August. It was over $60,000 and we did not pay a penny because we'd already hit our deductible for the year.

If I required further surgery and likely follow-up iodine radiation, I'm not sure what we'd do. It would be even more expensive. It would be a bankrupting-level expense.

Today at our library group, my friend pointed out that of the 48 countries represented at the World Cup, the United States is the only country that does not have universal healthcare. 

For me, the fear associated with finding out "it's back" isn't for my health. It's still a very survivable cancer. But it is how our lives would change when we were personally responsible for such an astronomical sum, especially adding in the nuclear imaging and all of the other pre-surgical stuff I had done before.

Fortunately, my lab results came back today and my thyroglobulin level is .1 which is practically zero; it will likely be 0 in another year or so. This is really good, especially since I'm no longer on a suppressing level of synthetic thyroid hormone (which I was for a year to try to prevent any residual tissue from growing).

Additionally, my surgeon is someone who has done tens of thousands of parathyroid/thyroid surgeries and I trust her completely. She took out a few lymph nodes for testing, and neither they nor my errant parathyroid were cancerous; it was just the thyroid. She said she thinks the inflammation from Hashimoto's almost made a little "wrapper" that kept the cancer isolated.

I've been fortunate. 

But it makes me mad that we're expected to rely on fortune, luck, the grace of any god, or our bootstraps to maintain our health. 

Elon Musk has just become the world's first trillionaire. No one should accumulate that much money. Especially when, if he just paid a fair share in taxes, we could absolutely use some of HIS fortune to improve the lives of hundreds of thousands of estadounidenses (I wish we had an English word for this). 

I guess keep your fingers (and toes) crossed for me that it doesn't come back or that it holds out until I qualify for Medicare in 12 years! And that Medicare is still around. Also Social Security. And please vote for a candidate who aligns with your wellbeing in the next election. I mean you, non-oligarch-level-rich person. Thanks.

Update, almost 2 years later: my neck

 Remember this?

It's that time back in May 2024 when I had a bunch of throat hardware yeeted to save my health and maybe even my life!

Briefly: diagnosed with hyperparathyroidism in early 2023 due to labs indicating high calcium followed up by labs showing high parathyroid hormone levels. Took a while to work through referrals for bone density scans, ultrasounds and a nuclear scan, needle biopsies, etc. before I finally found a parathyroid/thyroid surgeon who took care of everything. In the process, we learned that I had papillary thyroid cancer, but not until it was already out of my body and everything was good.

I just had labs done and the goodest news is that there are no thyroid antibodies in my blood anymore (and there haven't been since I've been tested starting a year after surgery), which means my body isn't fighting tumors because they all got removed! Yay!

But also good news is that my parathyroid hormone level is within range, meaning my three remaining parathyroid glands are doing their job.

My thyroid stimulating hormone is still a little low, but this is the first time it has been detectible since my surgery. This is because after having thyroid cancer and the removal of the thyroid, I was put on a suppression dose of synthetic thyroid medication to reduce the chances that any tumor material might get "fed" and grow. When you're overmedicated, your body doesn't send out thyroid stimulating hormones because you have plenty. That's not a good solution long-term, as being overmedicated can of course have negative health outcomes.

BUT this means that, as we've lowered the dose, we've allowed my body to move closer to equilibrium. My T4 free level is within range, but if it were just a little bit lower and my TSH were just a little bit higher, we'd be in that sweet spot and everything would be just peachy.

I don't have any symptoms from overmedication that I know of, and just like with my original diagnoses, we're just going on labs at this point. 

I feel really fortunate!

PS That picture was also from a few months before I realized that my hair was curly and I don't know how I missed it! 

I KNOW I said I wasn't going to do a whole post about my hair...

 ... but here's the deal: There's a lot.

First of all, when I realized I was getting some grey hair, back in late 2018, I decided that it was time to stop coloring my hair red and let it grow out. 

My rationale was that I didn't want to be one of those white-headed ladies with obviously fake red hair and shocking white roots.

It took about three to four years, but I was finally able to cut that last bit of dyed hair off and had my natural brown back, with some grey "highlights."

But THEN my hair had started changing into the wavy hair I mentioned a few posts ago. My hair had been absolutely straight, no body at all, my entire life. I guess it's perimenopause hormones, but it made my hair curly. 

Last summer, a hair-dresser misunderstood me when I said I didn't want layers and thought that I wanted my hair to match my "fringe," so she cut about 6 inches off of my length. 

What THAT did was to get rid of the remaining straight hair I had. 

Truth is, I needed that cut but was too much of a wimp to ask for such a drastic cropping.

It's so weird. This wavy hair came out of my head! New hair after half a century!

Well, I realized today that we're in another kind of "grow it out" waiting game.

In summer 2023, I started taking minoxidil. At the time, I assumed that I was losing hair because of perimenopause but now know that hair loss is a symptom of hyperparathyroidism. Regardless, my hair was thinning more than I was comfortable with when my hair was still mostly straight and very fine (it's still fine, but it looks thicker because of the volume).

Now, I figure we have about 18 months until my new growth catches up with the length I am keeping my hair these days.

I'm sure something else weird will happen by then and we'll get to start this process all over.

Recovery

First full day back home. I took a nap this morning from 10:00-10:30 but was otherwise pretty normal, energy-wise.

James filled you in pretty much... he just left out that I had a parathyroid gland removed, also. The surgeon said that when they took the left anterior parathyroid out, that my parathyroid hormone level dropped into the normal range, and my calcium dropped to below range but not zero. This means that my 3 remaining parathyroid glands appear to be functioning properly, even though they were dislocated from their former home (my thyroid, which James already told you I had removed).

I'm waiting to hit the Day Three wall (I've heard days 3-5/6 are the hardest in terms of recovery) but so far am feeling mostly normal, minimal pain in terms of having a sore throat, and though I walked much more slowly this morning that is typical, I did manage to make it 2.5 miles.

My follow-up with the endocrinology surgeon is a week from tomorrow, when I'll get my Steri-Strips removed. Until then, I'm camouflaging my neck because there's some blood and nobody wants to see that. But I can tell under the strips that the cut is tidy and should heal to almost invisible. Apparently, I have a "nice neck crease" where the incision will hide (read: wrinkles and fat). 

Probably my biggest struggle is going to be not to get into my head about the fact that I now require synthetic thyroid hormone to live. If we have some big societal breakdown or something that prevents the production and movement of medication, I'll literally shrivel up and die. So wish me luck, losers!

Super grateful for all of the help we had to make this week go more smoothly: 1) Thanks to Indeed for laying James off so he didn't have to rush back to work but was able to be a lot more involved in the minutiae of taking care of the house and taking care of me. 2) Gracias to my parents who took us out for dinner the night before my surgery, and then spent the night in a nearby hotel so they could be here at 6:45 AM to hang out with Mal while we went to the hospital. 3) Sincerest appreciation to Kristen, Mal's friend Kona's mom, who let Mal go home for a sleepover after Tuesday group. 4) And also danke to my sister for showing up the day after surgery to bring me back home, and for hanging out and visiting. (She ended up having a surprisingly full day when, after she finally returned home, there was a tornado in Temple and she and Ken and the boys went up to help Hannah and Aaron secure their apartment and start to clean up a bit. Everyone's safe, which is the important thing.)