Progress is still progress, right? I am in a crazy-making zone right now where the overall trajectory is definitely improvement. However, things have been so bad for so long that I am really scared to hope for anything for fear of jinxing myself. Hope feels too dangerous because it seems that it will inevitably lead to disappointment.
I want to acknowledge that I am probably difficult to talk to at the moment even though I also need people to reach out. When someone is struggling, we naturally want to comfort them. We would love to say “It’s going to be ok” – but what if it isn’t? We might try something like: “Things are getting better!” – that’s accurate in my case, but that can feel like it denies the very real suffering that is ongoing. A few people are getting regular updates on all this health crap. One friend sends a prayer and a joke every single morning. Friends from church have sent me things like an amazing thyroid-calcium poster and a dragonfly to symbolize transformation. I am beyond grateful for these acts of compassion. My inner circle has had a massive lesson in the endocrine system. Kevin has been an absolute rock. Sometimes I am scared and furious, but I try to remember that I am not alone.
All right, so here’s the update. We checked thyroid levels again on October 13 and THS was 2.1, basically the same as the previous test of 1.94. We are looking for that to be a bit lower so I am now taking 150mcg of levothyroxine a day, plus half a pill extra once a week. Hopefully that brings TSH down just a tad. Free T4 and Free T3 were within range. We will check thyroid levels again in early December, but I’m feeling good and I expect them to be fine.
The biggest news (and stress, as usual) is about calcium. From mid-September to mid-October, I was able to reduce calcium and calcitriol at the pace of dropping one daily pill a week. YAY YAY YAY! Calcium remained stable throughout and PTH (parathyroid hormone) came up! YAY! I got down to ZERO Tums per day and .75mcg calcitriol per day. Hallelujah!
Then we I tried to go to .5mcg calcitriol per day and my calcium dropped too low. That was disappointing. I also felt crappy. No real tingles but a severe backache and just general body grouchiness. When I returned to .75mcg calcitriol/day, those symptoms disappeared so it’s no mystery what was going on.
My endocrinologist characterized our process of dropping meds as “aggressive” and I agree. I was able to drop a pill every week for four weeks straight before my body said no more. That said, I was on a roll and having to go back on the higher calcitriol dose was a bit of a heart breaker. It’s been a major mental balancing act. On the one hand, weaning off that much calcium and calcitriol that quickly is pretty damn awesome. On the other hand, no one likes a setback and there’s no way to predict when a setback might become permanent. The plan for now is to let my body re-group for a couple of weeks and then try again. We can also tinker with things like dropping some calcitriol but adding some calcium back in.
Just to clarify, if my parathyroid glands don’t start working again, I have permanent hypoparathyroidism. That is a really shitty outcome. We are trying to discover if it is in fact my personal shitty outcome. This condition is often transient. If I can reduce and eventually eliminate the medication and my body takes over regulating calcium on its own, then I am good to go! If my calcium levels drop every time we try to reduce calcitriol, then I am stuck with this bullshit, probably for life. Calcitriol is a high power prescription strength Vitamin D that carries with it long-term risks of things like kidney stones, cataracts, and calcification of the brain. That’s why I want to get off it. Let’s hope and pray that my hypoparathyroidism is transient! The process of weaning off the meds is stressful because the stakes are high.
In terms of my voice, I’ve been able to get voice therapy appointments close to every other week. That’s much better than once a month! I’m making clear progress. At my first appointment, my range was only 17 semi-tones. At my most recent appointment, it was 28 semi-tones! Now a lot of those tones are squawks but the voice therapists assure me that that will improve. I am currently pretty hopeful that with time, I will get most and maybe all of my voice back. I have a new and deep understanding for how much our voices represent our selves. I am grieving the fact that six months after surgery, I very much doubt I will be able to sing Christmas carols.
That leaves the pesky little basal cell carcinoma as the last health issue. Because the last time someone cut my neck, things did not go so well, I had been hoping to treat this skin cancer with radiation therapy. Cigna has approved the radiation, but not the ultrasound guidance. I guess the idea is that the doctor would just wave the radiation wand in the general direction of my neck and call it good? I am running out of energy to fight the insurance company so I may just go for the surgery.
I am kind of stuck between hope and fear. It’s often hard to think about topics other than my health. After five months, I am getting quite tired. Yes, I am still running. I am in fact training for the Philadelphia marathon and it’s going pretty well, all things considered.
These updates are a way for me to process all of this stuff. Today is a tough day mentally but I need to get this post off my chest in an effort to move on so here it is.