This week marks the 12th cycle
get to the free hospital oncology parking lot by 7:30
sign in at a computer - first name, last name, birthdate, lab waiting
say good morning to everyone in the waiting room
wait
sign documents proving I have insurance and patient rights every new month
wait
hopefully get put in lab waiting
wait
sometimes I wait standing by the long cabinet of
*free cancer newsletters*
got breast, melanoma, lung?
sometimes I wait in the smaller waiting room
smells of flavored coffee
sometimes I wait in the larger room with patients and care givers
in various states of waiting: anxious, tired, resigned, chatting, deeply sick
morning news plays traffic and fake affable banter
wait
hear my name called and
finally
blood draw chair, two wide arms
left arm ready and
we talk about her granddaughter,
Nevaeh - heaven backwards
and the Saints
thank her and rush back out to fresh air and
home
wait for an email from Dr. M’s nurse
blood levels WBC, RBC, platelets
are they high enough
do I have to wait another week?
more labs or call in the chemo?
deal with pharmacy mistakes (every time it’s something)
stock up on applesauce and crackers
check the prescription was called in
(system default = wrong pharmacy)
wait at least two hours after eating dinner,
steroid an hour before
handful of anti-histamine and nausea pills 30 before
swallow sickeningly sweet chemo capsules
sleep
5 weekday nights
somehow keep moving and rest
reliably by the next Tuesday morning food tastes good again
the refrigerator no longer full of too strong smells
standard of care plan
I FINISHED ALL OF THAT!!!!!!!
Now it’s “scan to scan” MRI’s every two months for the next year
year by year they taper down 4…3…2
January 2020, when I got this crushing diagnosis, I could not think about what lay ahead. I could not think past the next scheduled procedure. Small reminders on printed calendars “radiation day 1, 9am,” “take x dose starting 2/4/20 for two weeks then reduce to y.” Sometimes all I could manage was getting to the next hour. The tiny print that commercials rush through, in a trusting voice, “side effects may include…” reared their heads as I’d rush to get sick, not be able to eat or go to the bathroom, or itch with maddening hives all over.
Pain, time. Pain, time. Pain, time. and uncertainty throughout.
I survived modern medicine’s draconian cancer treatment. The boys survived a year of online school. David survived over a year of working out of the corner window of our bedroom. Mom survived living with us in unpredictable New Orleans. I’ll miss COVID lockdown in a lot of ways. I’ll miss the comfort of all of us under one roof. The simplicity of life, just us, no plans. This despite the many cycles of personal and global fear and isolation as science and the pandemic progressed. And we are so lucky our income, home, and health (COVID-wise anyway) were secure throughout. Now we are all thrilled to be out in the world again (we’ll be even more thrilled once the boys can get vaccinated). Sitting inside with a friend. Our first small dinner party (kids masked, all adults vaccinated). Inviting the neighbors inside instead of talking on the sidewalk swatting mosquitoes.
David and I are celebrating by going to Tulum, Mexico for a week. We hope to plan many more trips in the next several years as this experience has convinced us to do more and wait less.
I watched the Billie Eilish documentary with the boys recently. A 17 year old Billie pulls out of the driveway for the first time with a fresh driver’s license. Her dad is left behind talking to the camera. He muses that the other day he’d choked while drinking water. Humans are so fragile, he explains, but you cannot not take risks in life. To get through that quandary, you have to live in denial.
That is exactly where I’m living now, between denial and wonder. Errant cells begone. A very positive optimistic denial that looks a lot like being here right now again, and again.
Love all ya’ll through time and space.
Marvelous...that's the word for the writing...before I can fully grasp the joy the news brings I have to take a moment to marvel at how well you have expressed the experience. I thank god. i thank all those who helped you do this. I thank you for persevering
For exactly my entire life, I’ve looked to you for how to BE. I hate that this has been your last year and a half. But you find grace and guts and the interesting and you make it through. I’m gleaning lessons from you always. Love you through time and space.