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.

What is the opposite of Body Dysmorphia?

I remember seeing a picture of what body dysmorphia is a long time ago. Basically, there are multiple line drawings of a person, the same person, from extremely trim to very portly. An eating disorder care provider shows the picture to a patient and asks them to point to the one that looks the most like them. For someone who has body dysmorphia, they will inevitably select a representation that is three or so sizes larger than they actually are. That is how they see themselves, even in the mirror, even when reality is something else entirely.

I have had a disordered relationship with eating and exercise, but sometimes I think I have the opposite of "dysmorphia." When I was growing up, I never "felt fat" (which isn't a real thing, but you get what I mean) before I heard that I was fat from other people. 

Taking a bath with my cousins: "You're as fat as my mom."

Sitting behind a classmate on a van for a field trip in junior high and accidentally hitting the back of his head as I moved some stuff around, then apologizing only to be told: "You're so fat."

Bagging groceries at 16 years old: "Oh, are you expecting?! I worked at a grocery store when I was pregnant with my first."

And it got to me. I remember standing in front of my parents' bathroom mirror (because it was bigger than mine,) and puffing out my stomach, looking at my reflection and saying, "I hate you. You're so gross." 

But the thing is... I didn't hate myself. I thought I was really cool, funny, and smart. It really never occurred to me until it happened (over and over) that someone might not be interested in me because of how my body looked.

And yet: "She's too much woman for me." "You have to pull it together; you're about 50 pounds overweight." "We can be friends, but I'm just not physically attracted to you."

This worked, and by "worked," I mean that it got me to lose weight multiple times in my life. But I still always always thought, "If this person would get to know me, I think I could win them over because of how I am. I'm pretty awesome!" 

(Incidentally, the same person who told me he wasn't physically attracted to me came around months later, apologized for saying that -- I'd given him a talking to about how rude it was -- and said he actually DID find me attractive... but fortunately, I was old enough to have some self-respect and wasn't interested in him.)

Furthermore, when I look in the mirror, I like what I see. I think I look great most of the time. Sometimes, I'll see a picture that makes me go, "Yeesh," which I think is a normal human experience. But I think I'm cute. I identify as "fat" (specifically "small fat" since I can buy clothes in non-"extended" sizing, but only barely and not certain brands) because I think my BMI is in the "overweight" category (though I haven't weighed in more than a decade) and clothing sizes tell me I'm big... but I don't, again, this isn't a real thing, "feel fat." 

This is probably because I'm extremely fortunate genetically. My parents both have long-lived parents and grandparents, and we just hit the lottery that way. Diabetes doesn't run on either side. Heart issues are sprinkled around, but neither of my parents has heart disease. I haven't developed arthritis yes, and I didn't do the kind of youth sports that would come back to haunt me as an adult. I have been lucky enough to mostly be able to afford the healthcare I need to stave off problems (though I *do* need a neck ultrasound and a DEXA scan, and have for 2 years... I'm just glad we still had insurance to get my thyroid and parathyroid removed before the coverage ran out!). 

So the fact that I can get up and go and do whatever I want to do, with my body being pretty darn reliable, means I don't have complaints that make doctors suggest that losing weight might help. None of my doctors since I've been an adult has suggested weight loss or dietary changes, regardless of my weight at the time of care.

All of this means that it just surprises the crap out of me when people ask if I'm pregnant (the last time this happened when I wasn't actually pregnant was about 15 years ago; now I probably look too old for that to be a possibility). Or that I'm too shocked to respond when a family member found out how much Mal weighed at birth and said, "What?! You mean I carried a heavier baby than YOU did?!" (She was 5 days postpartum, so I gave her some grace but... holy crap, it's okay to think things and not say them out loud.)

I also want to state that I think fat people ARE cute. I know that fat people are healthy and active and, in fact, a lot more active than I am (fat marathoners, I see you... from the stands and support you but that couldn't be me). I also know that a lot of people can't achieve whatever "healthy" means because of disability or access to medical care or chronic health issues. And those things can happen to anyone regardless of size.

But my point is that there is a disconnect somewhere that I am so absolutely shocked and appalled when someone looks at my body and then makes a comment that does not align with my own experience of myself, and it's jarring. 

Anyway, thanks for coming to my Dear Diary session. Have a great weekend!

Fourteen years ago...

 

... a photographer and incredibly talented acquaintance from D's gym, Gabrielle, offered to do a photoshoot with me. She also wanted to style me, fix my hair, and do my makeup. She brought some stuff (including this floofy skirt) and looked through my closet (the shirt and shoes) and came up with three looks, changing makeup and hair for each. It was a fun few hours, and it really meant a lot to me.

I knew at that point that I was going to leave Sherman, and it was a neat little bow to put on the end of my time there.

When I look at these pictures, which include a bunch taken around my RV and in the park where I lived, I can remember exactly how I felt, why I was leaving, what my heart ached for, and what a "dead end" sign seemed to be posted on the road to where I believed my happiness lay. 

This was a world without Mal in it. A world where I'd spent the past year and a half of my life trying to get my church, my world, to approve of me. A world where James was just a guy I'd had a crush on in high school. A world where I could not imagine where my only (at the time) child would take me over the next decade.

In this picture, it seems like I'm looking back and resting for a minute before embarking on a whole new life: moving to Austin, growing my family, finding a community in a tiny town I never heard of before we came to look at a house I saw online. 

I'm not friends with ANYONE from those days. I'm not in touch with a soul from Sherman. I cannot see how any of my acquaintances would fit into my world anymore. After trying so hard to jam my square peg into the round hole I desperately wanted in, I cannot imagine something that sounds worse to me now. 

As always, onward and upward.