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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.”
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.
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.
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.
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.
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.
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.
Owning Voice 