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  • 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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4 Comments


Guest
Mar 07, 2022

Thanks for sharing your feelings. I agree it’s ok to care about your hair. It’s a part of you and women, especially, spend so much time and money on our hair. Fingers crossed for a good PET report.

Feeling fragile about our country and world events right now is an excellent description and is how I feel too. Thanks for helping me to name my feelings.

I always enjoy your posts. Sorry I’m a slacker about replying. Please

know, you and Isaac are in my thoughts and I’m always wishing you the best ❤

XOXO

Aunt Susan

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Emily
Emily
Mar 07, 2022
Replying to

I’m a slacker too, it must run in the family! ❤️

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Guest
Mar 06, 2022

Thanks for the update. Will await more news, hopefully good. Do you watch Jeopardy? There was a cool lady (multiple winner) who showed up one day without her wig so that we could see the results of her cancer struggle. Very moving moment. I added love to being impressed.

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canarydoor
Mar 04, 2022

Always so good to get your updates - fingers crossed for good news on Wednesday! ❤️ And it's OK to care about your hair!! Even if it seems like a relatively small thing when the world is just SO MUCH right now, your stuff is so much, too! And yet you keep on being awesome. 😊

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