Endocrinology Dance.

“One day, the storm will be over, and you won’t remember how you survived it. You won’t even be sure if it’s really over. But one thing is certain: when you come out of the storm, you will never be the same person who entered it again. Because that was the whole point of it.” -Haruki Murakami

I saw my endocrinologist this week. I didn’t expect any new information, it was mainly just a check in. That was nice, because frankly most of my appointments with her have been bad news, so this was nice for my nervous system to be there when everything is ok.

The main goal at this point is to get my TSH to a normal range so that my estrogen comes back to a normal range. Since we just tweaked my thyroid replacement hormone, the plan is to check my blood work in a few more weeks. It was still pretty low at .01 and the normal range .1-.5. We wanted it more suppressed for the first year to keep any spawn of Tina Tumor from growing, but now it’s time to bring it back to normal range. Having it suppressed for a long period of time can have other impacts, including on my hormones (estrogen), which is why I’m having period symptoms, and on my bone strength. Since I already have osteoporosis, we need to be careful of that.

The slightly concerning thing, is that as my replacement does decreases and my TSH (hopefully) increases toward the normal range, the tumor marker (Thyroglobulin) will likely increase. The hope is that it only increases slightly. It was 11 for the last few rounds of blood work, and her hope is that it doesn’t get higher than 20.

It’s such a delicate dance!

If it does rise higher than that, we will likely do another full body scan.

If it stays low and my TSH is in a normal range, then we will check my estrogen and make sure nothing else is going on.

I go back to OHSU in Portland in June 1st as well to have another CT scan and ultrasound. That will likely continue every 6 months for the next couple years.

Even though it’s all very confusing, overall, I feel good about the plan. The positive thing for me, is that none of these regular tests are overly difficult or painful. Blood work doesn’t bother me either, so it’s more the hassle of getting out there.

I asked her if I will ever be able to say I don’t have cancer; and her face and reply told me what I needed to know. “That’s a good question,” she said with something like a grimace. Basically if my tumor marker stays at the level it’s at for a few years, we can assume it’s not growing anymore. But I don’t know if I’ll be ‘cancer-free.’

That’s disappointing, but also good to know.

The other blessing that happened this week is that after a collective 8 hours of fighting with my insurance from last year about claims from last October, I reached out to a friend that used to work at United in desperation and she was able to help me get assigned a person directly to help me navigate this mess. For some reason, in October, United got a cancellation from Cobra which reset all my deductibles and out-of-pocket-max. But that wasn’t true, I had Cobra all last year; however every time I called they would ‘file a ticket’ and then come back with the same response. It’s been SIX MONTHS and my bills are starting to threaten going to collections. I hate asking for favors (or help, frankly) but I sent her a pleading text and within a few days I was given Stacey, an insurance angel. She is amazing and responsive and competent and I can’t even tell you how grateful I am and how much less anxiety I have now. Even if I end up having to pay something, at least I know someone is really listening to me and understands the issue! I so wish that everyone with a critical disease could get assigned a real human like her.

Otherwise, I’ve been enjoying my down time of not having to run all over for multiple appointments. That is also something I am very grateful for.

Yesterday a friend of mine and get other two friends all got gussied up and went to dinner in Bend! It was cool to meet new people and splurge a little on a delicious meal!

I have even started watercolor painting! I’m not all that good at it but discovered that if I paint more abstract things, then I don’t feel as bad about it not looking ‘correct.’ And who the heck cares, I’m having fun! I’ve been trying to spend about 30 minutes as often as possible with the caveat that as soon as I start getting frustrated, I can stop for the day. No one needs self-inflicted frustration on top of everything else happening in the world!

Did anyone listen to the telepathy tapes?! Let me know if you did!