• Emily

am I breathing underwater?

Hello! It's been a while, hasn't it? It sure seems like a million years ago. Not much has happened on my end, really, but everything else seems to be happening in the world.

As an update on my end I had my PET scan this past Wednesday. I will go over results with my oncologist this coming Wednesday. I am not sure I will get NED status but I am hopeful for good news! I will be keeping my fingers crossed, for sure.

I will also be getting a drastic haircut this coming week. I've not really shared but I'm losing hair by the fistful every time I wash my hair. This could be due to a hormonal imbalance (I will be asking to have my thyroid levels checked when I go in on Wednesday) but it also could be a rare reaction to Hydrocortisone.

Unfortunately because of the Adrenal Insufficiency, Hydrocortisone is a non-negotiable medication for me, so I'll either learn to deal with the hair loss or keep my hair short for, well, ever. Admittedly I am not sure anyone else would notice my hair thinning yet, but I sure have. And I'm not sure how much worse it may get. I feel very lucky to have hair thinning and no specific bald patches on my head.

I always thought folks who are attached to their hair were odd. Well, if I've learned anything from having cancer, it's that stuff that matters isn't always what you expect. I have had short haircuts, and I've dyed my hair silly colors. But seeing how much hair you're losing, when you don't really want to be losing it? That sucks. Cleaning out the drain twice during every shower? That sucks. I get it now, and it's not even that bad for me!

Of course this is really a small thing and I'll be okay. And again this is nothing compared to what a lot of people are going through. It's a weird feeling to be sad about my hair being stupid and also devastated about ongoings in the news. On a related note I have donated to both the National Center for Transgender Equality and also CARE's Ukraine Crisis Fund, and both those organizations had the "Give with Confidence" seal on Charity Navigator so hopefully my small portion can help real people.

But in this world it just seems so hard to carry it all. Things can all be simultaneously so hard, and I'm still one of the lucky ones. I guess these days I'm healthier than I've been in years probably (outside of the diseases I have, ha!) but today I'm feeling as fragile as the world at the same time.

Anyway, enough of my nonsense. I promise I will update when I get my oncologist's interpretation of my PET scan results. I hope you are all being kind to yourselves.

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