Julia, Mom, that is not meant as a low blow. But it just so happens that I am here alone tonight and while I could easily fall asleep right now, it seems like I ought to take a moment to write something in this space. It's hard to do with company. I've been thinking for days that about what I'd write next in these pages. I haven't formed anything concrete beyond the themes of: Doubt, or Fuck--there are so many ways cancer can kill you!
I guess I should explain the second one, first. I am inpatient right now with neutropenic fevers. In the past that has meant next to nothing, but this time I got a nasty infection in that mediport they only just put in two weeks ago and so they snatched it out again last wednesday morning after a very touch-and-go evening of chills, fevers, and scarily low blood pressure. Fuck. I mean you just never see this shit coming. I have ZERO white blood cells and some kind of crazy-ass infection. Not fucking cool.
Which leads me to the inevitable thought: what if I die young? For a while, I thought about that regularly, and eventually dealt with it by willing myself to assume that I will live to be eighty or ninety, just as I've always intended. But now I'm not so sure again. I guess that's where the Doubt comes in. There are plenty of things to doubt these days. How long will I live? Will this infection rear up and kill me?--I claim in a poem that I just don't want to see death coming; that would count, wouldn't it? (Not really; that poem is about living life to the fullest.) Have I chosen the right treatment plan? How will I ever know?
But mostly, I guess, it's the wondering how long I will live that whirls about my head most these days. Just last summer I got my period for the first time since I started chemo three years ago! I went to the gyn and she said if I was trying to get pregnant she'd tell me to go home and have sex--I had excellent mucous! And now here I am again, frying my ovaries most likely beyond oblivion. They probably won't wake up again. And I don't really mind not getting my period; it's rather convenient, actually. But I want a baby. And it feels like that's been taken away from me twice now, and even though there are other ways to have children (especially when your lover has a spare womb) I just don't know if it's in the cards for me.
My sister recently asked me to be the godmother to my beautiful, wriggling neice. It brought tears to my eyes just to be asked--to have my sister want to bestow me with that honor--but it was made all the more emotional a moment as this thought flashed through my mind: okay, now I've really gotta make it. I've got to be here for this little perfect one. Got to see her grow up into a kick ass girl. So maybe I should have my own kid. I sure want one. But how can I know if I'll be there for her when she's my age? Or maybe the more important question is, who will be around for her if I am not?
Or maybe I should be concentrating on how to be around when I'm eighty. But how does one do that when almost no one knows anything about this disease, let along actually has it as an adult? If anyone out there knows another adult or adolescent with neuroblastoma, will you send them my way? I'd love to chat.