Today marks 7 months since my bone marrow transplant and I am finally ready to celebrate a tiny bit. Don’t get ahead of yourselves – this all still sucks – but it sucks a little less. It feels like I’m ‘waking up’ for the second time – first after all of the sirolimus hallucination shenanigans and again after the past few months of struggling to find joy in my days.
I am feeling kind of lazy and don’t really want to write a coherent blog post so instead I’m just going to throw out some blurbs of what’s been swimming around in my brain.
You probably know your body a little better than you realize. Little things like how much food to take at dinner, what clothing fits your body type, how fast you can run. Throughout this experience my body has changed so much and so often that I am frequently shocked at myself. The first time I was discharged from the hospital I tried to run up the stairs in my house and my legs just collapsed. I had no idea they were so weak. Recently, I’ve been on an absurd amount of steroids so I am frequently STARVING and then shocked when half a sandwich has me stuffed.
So I’ve been feeling a little lost. At first, I really wanted to reclaim my exact old self but I am learning that I can really only go forward, so instead I am just trying to adjust to what my body is now. Which is weirdly tiny, hugely swollen in the face (love steroids), topped with uneven scraggly brown hair, and in tiny, comforting ways still me. I am truly thankful for the little bits that I’ve always known, like the scar on my right knee from rollerblading when I was 9 or the one eyelid that is a little droopier than the other. I’m still on a lot of steroids and my parents are worried about things such as my bone density but mainly I just miss my face! Like I said my cheeks are massive, but somehow my nose has escaped the swelling and still looks the same. To be honest, I’m not sure if this is a blessing or if it just makes everything look even more disproportionate.
It’s starting to feel like it’s almost summer and I have spent so much of the past 10 months inside that I am shocked by weather all the time. The other day I thought I was having a hot flash, which sounds absurd but is actually reasonable because I went through through menopause and also leukemia can give you night sweats so I had some brutal hot flashes for a few months. Then I realized…it’s almost summer. Seasons are a thing! So this summer I am hoping for more good days than bad, for continued healing, for getting rid of steroids, and to be able to convince my doctors to let me take some classes because otherwise I will go truly insane. Also to not relapse.
Here are some pics of the past 7 months:
The chart where we kept track of my counts
The day I left the hospital after my BMT. Note the eyebrow tan/lack of tan.
Less than half of the fluid drained from my lungs in December
Fun in the ICU
First time eating in 2 months
The beginnings of steroid face