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.

Year-later endocrinologist follow-up, with bonus gynecology content!

I met with my endocrinologist today for the first time since my surgery. She told me that I needed to get a neck ultrasound ASAP, as I really should have gotten one pretty soon after the surgery. I wish I'd known because I had insurance until the end of August 2024! Now I'm applying for the Travis County Medical Access Program.

Also, the doctor mentioned that the medication I'm taking is actually lower than my weight would dictate I need, so she's wondering if that means part of my thyroid was left. I definitely hope not, because that would mean another surgery. I know there was a lot of inflammation, and I know guts look a lot alike so I suppose that anything is possible.

This wasn't a lot of fun when I had insurance, but I wasn't worried about the finances at all. If I have to do it again, it's going to suck, but it will suck a lot more than it did when I didn't have to stress over every penny (or tens of thousands of dollars).

To review, here's what I had done: Neck ultrasounds (one in an imaging place, two at my endocrinologist's office, and one in the surgeon's office), two sets of biopsies, a DEXA scan for bone loss, multiple labs measuring PTH and Vitamin D, a 24-hour urine test (the worst part of the experience by a wide margin), a nuclear scan (two+ hour procedure), a pre-op visit with the surgeon, the surgery and overnight in a surgical hospital, post-op with surgeon, more labs, and now prescription forever.  

Also, my regular doctor wants me to see a gynecologist because of some menopause stuff that isn't like "I feel weird" but like "that shouldn't happen and you need to get it looked at." And actually, I feel fine. It's hard to worry much when you don't feel off, but that's how it was with my hyperparathyroidism and Hashimoto's, so I know my body likes to hide dysfunction from my feelers.

I'm hoping if we get approved for the MAP, then I can stop obsessing over find the cheapest care for each specialty.

I hate healthcare being tied to a job.

My friend Adrienne told me that she doesn't care if I have to go into medical debt to take care of myself, so if that happens I'm just putting all of my medical providers on notice that Adrienne in Las Vegas (kind of) assured me it would be JUST FINE. You'll get $200 a month for the rest of my life, so I guess you'd better do a good job to make sure that I'm going to be around to pay it for a long time.

When you see it visualized like this, it seems like it wouldn't be any big deal to get the thyroid out! But also... that she removed the thyroid but kept 3 of my parathyroid glands in there is pretty unbelievable.

The Rich Get Richer

One last thing before we get off of the subject of my glandular heave-homent:

This whole thing started because we had insurance (have, until the end of this month). Since we have insurance that fully pays for annual check-ups, I've gotten bloodwork done every year for the past 5 years. There have been some things, like low whole blood, that required some looking into but were determined to be nothing. 

But in January 2023, I had high parathyroid hormone level as well as high calcium. Those two things both being elevated is an automatic diagnosis of hyperparathyroidism, and the only way to treat it is surgery. 

Getting referred to a good surgeon led to the suspicion and diagnosis of Hashimoto's disease, and all of that resulted in my having my thyroid and one parathyroid removed.

What had already happened was that I have experienced some bone loss (would be characterized as "osteopenia" if I were post-menopausal), and that I was frequently eliminating cloudy liquid as my poor little kidneys tried to flush the excess calcium out of my blood.

What could have happened was hypothyroidism, and any of several more advanced autoimmune disorders like Crohn's, Grave's, or lupus. I also could have had permanent nerve damage at my extremities due to wonky calcium levels. I could have fractured my hip. 

But I didn't.

We knew what was going on because I had access to adequate, thorough health care. Through James's work. Which he doesn't have now.

I went most of D's life without insurance and, consequently, we only went to the doctor's office when there was something overtly wrong. But in this case, if I'd waited until possible symptoms of thyroid disease had presented themselves, my body would have definitely been worse for the wear.

So I'm grateful.

I don't know what's going to happen in terms of our insurance after the COBRA stipend runs out. Tech employment is rough right now. But I do know that everyone deserves preventative care (in addition to acute care, obviously). Why is that a controversial ideal?

Ridiculousness with medicine!

It's been a while since D has had a well checkup. 12.5 years, if you're counting, which I wasn't until the PA asked, and then I felt a little sheepish. Anyway, it seemed like the time was right (and ripe?) to get a full physical and blood panel, just to make sure everything is going well in adolescent land.

The physical was great, and we have an appointment to go back in three weeks to discuss the results of the many many blood tests.

I was really impressed with Austin Family Medicine, I have to say. The PA was great, we were in and out fast, and it was nice not to have to be around sick people just to get a physical, honestly.

I prepaid for all of the labs, most of which were in the $20-40 range. There was one that was closer to $500 that they said I could opt out of, and then I had to sign a paper that said I understood I was going to be billed for another test, but it would be $125 maximum. And that's where this gets interesting and stupid.

Today, I had a voice mail. If you ever call me, I'm sorry. My phone is usually silenced, and I almost never answer it. But I do return calls (or more likely text back), so when I saw this message, I listened. Here is what it said:

"This is Jake from Boston Heart Diagnostics, calling for Daphne. Please call me back at..."

I was actually in our complex clubhouse when I got the message. Mal wanted something, but I shushed him and opened my notes so I could write down the number and the reference. I called immediately, my imagination already going. The diagnostic center doesn't call you... unless it's something serious.

As it turns out, our friend Jake is from the billing department, a fact I feel he purposefully neglects to include because he thinks people wouldn't reach back. That's the first crappy thing.

Jake had apparently called to get my insurance information, which I don't have since we don't have insurance. I explained that I was cash pay and was trying to pull up my Google Wallet so I could pay off of the info on my phone, when Jake came on the line to inform me that the cash pay amount for the test was $2200.

I said, "I was told that the only other test would be $125, max."

He said, "Oh, yes, one of the tests is $125. But we ran all of them and here are your options: You can fill out a form and see if you qualify for assistance, based on your household income and the number of people in your home. You could qualify for 50% up to 100% of the cost paid for." (I guarantee we qualify for nothing.) "You can work out a payment plan, so you can pay a little bit a month. Or you don't have to pay, and we just won't send the results to the doctor."

Okay, so NOW I get it: This place ran more tests than they were authorized to run because they assumed I'd have insurance, so it'd be paid for, even though it wasn't ordered. Then when they find out I'm cash pay and realize I might not want to fork over $2200 when I'm worried absolutely zero about my daughter's cardiac health (not that I'm not concerned, but I have no reason to be worried that it's vulnerable), since they've already run these big expensive tests, they'll just hold on to the big expensive results. That's the second crappy thing.

Well, second and third. Second is running the unnecessary tests under the assumption that it'd be covered because what insurance company is going to question it? And third is basically trying to extort money out of me for results they already have and might as well just zip 'em over to the office. Jerks. Stupid, money-grubbing jerks.

I'm GLAD I don't have insurance and they won't be repaid for their time and effort and whatever they used in testing. I'm sorry someone else is probably paying for it through their own payments or insurance premiums or whatever. The whole thing is ridiculous.

This raises an ethical question: What if there were something amiss, like a congenital defect or something we didn't know about, that came up as a result of this testing? Are they liable for not mentioning it, even though I didn't pay to see the results?