When I was sick, I contacted the Leukemia & Lymphoma Society. They were great, and recommended this Peer-to-Peer program, where they connected current patients by phone with survivors of similar age, background, and treatment.
I asked to speak with someone who’d chosen only chemo, as I was doing, instead of chemo + bone marrow transplant, which was standard (and recommended) protocol.
I spoke on the phone once to a woman who was a few years older than me, who’d also had the cancer come out of nowhere, and who'd also chosen “only chemo.” She went into remission, and when she was done with treatment, she began training for marathons.
I can’t remember if she’d been a runner before she got sick, but she told me she went at it with abandon. Not “fun runs,” not 5ks, but the long New York City Marathon-style kind of marathons.
Her doctors advised her to “take it easy,” to go slow, but she, like me, felt that she had time to make up for, and also like me, wanted to prove that her body was her own, and not a foreign infectious parasite. She wanted to prove that she could be above, beyond, and more than her cancer. She wanted to tell it, Fuck you.
Within a year of remission, healthier than she’d ever been, this woman’s cancer returned. Leukemia. Again.
So she finally went into the recommended bone marrow transplant treatment, the year of absolute hell (with two small children at home), and was now 5 years out from that relapse.
Tell me if you don’t get where I’m going with this story.
This is part of the reason I need to slow down. To focus my energies.
I got a bill from Stanford Hospital yesterday, only for a $10 co-pay, the actual cost of my meeting with the bone marrow expert much higher. I’d gone twice to see them when making my decision. Once with a friend, and once, gratefully, with my mom. Because we really all just need our mom sometimes, and I'm lucky mine is around.
The Stanford folks explained the harrowing treatment process, and took some blood to type-test against my brother to see if he’d be a bone marrow match—and he is, should I ever need the assist.
There’s a family at work, a congregant’s family, where the sister of the couple I know just is going through the phase of integrating her brother’s marrow with her own, and apparently the grafting is going well.
I’m typing up a “life story” for an older woman not inclined to typing. In it, she recounts the tale of her friend, diagnosed with one cancer, gone into remission, and then relapsed with Leukemia, and dies.
Cautionary Tales, I think is the word for these stories.
To be cognizant with my body, my efforts, my love of self and others. To be compassionate to my own twitching reaction to the above stories, too.
In the first few months of returning to work last Spring, a congregant I’d known only in passing told me he was 15 years out from Lymphoma, and if I ever wanted to talk, he was available. I took him up on that offer a few times. He’s the one who told me the Damacles’ Sword story.
I asked him when the vicious paranoia stops? When every cold, fatigue, sore throat doesn’t send your mind reeling to the far end of doomed? He said, Five Years.
He said, he knows it’s just a magic marking in time that the doctors put on us, but they do. Five years in remission is the marker they use to say, “Okay, you’ve made it this far, so you’re pretty much as healthy as any Tom, Dick, or Harry. Good on ya.”
He said that even though it’s a nearly arbitrary mile-marker, that’s when he felt able to breathe for the first time in years.
He also said it sounded like I have done and am doing a lot more concerted work around my disease, my process, and my healing that he was not able to do until some years later.
My cousin told me the other week that I talk(ed) so much about the nuance and subtlety of being sick. The multi-faceted nature of health and wellness and life.
I get to have my experience of being scared, I get to have my experience of processing the fear, and I get to have the experience of saying, Hey you, Fear: Go bother someone else.
So I am slowing down, I am pulling the e-brake on my spinning world. Because I listened when that marathoner told me about her relapse into Leukemia. And I am more scared of going through that than I am of telling people, I’m sorry, I can’t participate in that thing right now.