After 37 days in the hospital, I was discharged on Saturday. So far my main feelings are complaints that there is no morphine at home and that it is a bit harder to ignore having leukemia when you compare yourself to the outside world. Leukemia is different from other cancers because since it is in the immune system, treatment is primarily inpatient. I never left the hospital between being diagnosed June 18 and this past Saturday. Until then, my coping mechanism of denial had been working pretty well for me and I’d avoided a lot of the messy emotional side of my body completely screwing up and kind of ruining my life.
So then I left my little cancer bubble where having cancer is totally normal because everyone does and we somewhat adjust to whatever ‘normal’ is thrown at us and manage to care about things like whether our heads look weird or if all the scars are going to make us look weird in bathing suits (maybe that is just me, idk about the four year olds’ body issues). Denial is getting harder but I’m told maybe I’ll feel a little better after the anger phase or something.
Speaking of anger, this totally cruel thing happened where I got a bunch of surgery on Friday and then was discharged the day after. My central line (this permanent IV thing that goes to my heart, clearly I’ve had all sorts of fun with it) slipped out of place and had to be redone, I got an ovary out (turns out bone marrow transplants make you infertile and I don’t have time for an egg retrieval so I’m doing sketch ovarian tissue freezing), and they did a bone marrow biopsy and spinal tap. I am stealing someone else’s joke here, but they basically went shopping in my body. And then they sent me home where, like I said, I unfortunately don’t have a morphine pump handy.
Turns out getting an ovary out is literally the worst thing ever so think hard if anyone ever recommends ovarian tissue freezing to you. My hypothetical less-than-1%-chance-of-existing future children owe me big time.
I am still not allowed near crowds and I’ve mostly spent the past two days feeling bad for myself because it feels like I got knifed in the stomach, but pretty soon I have big plans to go to the park next to my house and I feel so weird about it because, surprisingly, I am bald and scrawny and look like a cancer patient. Secret’s out to all the strangers at the park. I am giving up on denial more and more by the day so get ready for some angsty blog posts or something (unless you already classify this as angsty which I wouldn’t blame you for).
In other news, I feel like I should clarify this whole bone marrow transplant thing so people stop asking me when the transplant date is. We can’t set a date because I have to get into remission first. We are hoping to do that in two rounds of chemo, but it may take a third (someone please help me if this happens). Cycles of chemo are a monthish with ten days of chemo then threeish weeks of count recovery but you can’t predict exactly when that will happen either. So it’ll happen in a month or two or maybe three. Bone marrow transplants are crazy because they just kill your bone marrow (and ovaries) with extra aggressive chemo then drip the new bone marrow in with an IV and it knows exactly how to get to all the bones and take over. Pretty crazy stuff that would be way more interesting if it wasn’t happening to my annoying cancer-producing body.
PS ovarian tissue freezing is not that sketch (my ovary is at UCSF right now). It’s just highly experimental and has only worked a few times so far.
Sorry this is going forever but some quick updates: my bone marrow went from 66% cancer to less than 10%, I will probably be back in the hospital on Friday for round 2, my hair is growing back a little and my head has fuzz, everyone should watch Tig Notaro’s Netflix biography because it is my new favorite thing.