6: 30 am: Wake up.
Drink coffee.
Trip over crap in the kitchen full of half emptied boxes and bags of trash on the floor.
Eat toast.
Shower.
Run upstairs and put the towels into the dryer before they mildew.
Take meds.
Get dressed.
Pack cooler full of chemo mittens and booties and extra ice packs.
Grab laptop and phone charger and notebook.
Forage for some trail mix, fill water bottles, and stuff those in the backpack.
Get Paul to help affix new acrobat charm to charm bracelet, and the new bus charm as well.
So begins Chemo Day #3, all the talismans, trinkets, gadgets, and snacks in hand.
We are out the door at 9:30 but I have to stop to feed Jacqui’s cats and then we try to remember where we parked the car. Is it off the alley? Nope. Track back through the garden and out to the street in the rain. We are 5 minutes late getting to the hospital, but it doesn’t matter. At check in, I perform the ritual: Name. Date of birth. I say them so often they have become meaningless syllables.
The receptionist wristbands me; we take a seat and wait for the nurse to call me in. There’s a frail-looking man sitting across from me with a friend, and we exchange pleasantries, of the sort one might imagine transpire in the lobby of the cancer pavilion: Who’s your doctor? What’re you in for? He volunteers that he has trouble with some of the nurses; they’re not as gentle as he’d like, searching for veins. I note that they just go in through my port to draw blood, as this is an all day event for me.
Oh, he says, you’re having REAL chemo. I’m just having baby chemo, he adds.
We laughed at that, these absurd distinctions only meaningful to the skinny and masked people living them.
I go in and the needle is popped into my port. I remembered to smear it with lidocaine before I left the house, or “frost the cupcake,” as we put it in the calendar, so there’s not even a blip of pain. I get four vials of blood drawn and then scoot upstairs to see my oncologist. I’ve lost more weight than I had anticipated, and my red blood cell and hemoglobin counts are continuing to sink, which means more panting up and down the stairs is coming soon. I’ve been feeling so good this past week, even hauling boxes in the summer heat, up and down, up and down, sweating buckets and swilling Gatorade all weekend long. It’s depressing to think of losing stamina again, but my mood soars when the doc pokes around in my armpit and at the mass in my breast and makes some approving noises.
The lymph nodes have shrunk to less than a centimeter, he wagers. And the tumor is melting away as well. After two cycles of chemo, he says, this is extremely good news. This is all wildly encouraging and for the first time feels like all the shittiness and sickness of the past six weeks have a point.
He asks if I’m getting any exercise and I say I’ve joined a rowing team and he perks up, asking if that’s the one that practices on Bubbly Creek. Why, yes it is! He says he’s known many patients who have been on the team at one point or another, though most of them join after they’re further along in their treatment than I am.
His nurse, Lori, asks about circus and I say I’m still doing that too, and she whips out a photo she saw, an advertisement for leggings, that shows an aerialist doing the splits in a hoop. She shows it to the doctor.
Is this what you do?
Yup.
My oncologist is not a demonstrative man. He’s quiet and direct and pretty understated. He says nothing, but his eyes widen a little and I can tell that underneath his mask he’s grinning.
Lori warns me to be careful doing inversions, reminding me about my hemoglobin, or lack thereof. She’s worried I could get disoriented and fall.
I promise to be careful and remind her that one of my coaches has herself been through breast cancer treatment so she knows the drill.
The doctor is leaving, but he stops in the doorway. There are a lot of members of the sorority out there, he says, once you know the secret handshake.
Back downstairs in the chemo suite, we’re getting our routine down. First the saline flush, then the ondansetron and the aprepitant (I think?), two different prophylactic antiemetics. The carboplatin in my chemo regimen (the “C” in TCHP) puts me at “moderate risk” for nausea and vomiting, which is better than high-risk I suppose.
Then we settle in: half hour of pertuzumab, the another 30 minutes of traztumuzab, during which I drink tea and mess around on Twitter and attempt to do a little work — though I discover I’ve brought the wrong notebook again — until it’s time to put on the cryogloves and boots we’ve been carrying around in a lunchbox cooler. These are supposed to mitigate against nerve damage caused by the docetaxel, which flushes through for a full hour. I’ve heard it can take years to get full feeling back once you develop paresthesia – a numbness, tingling, or burning usually in your fingers and toes – it can take years for it to resolve. I do not want this, at all. So I wear freezing cold boots stuffed with ice packs on my feet, and mittens on my hands.
The boots seem to work well; my feet are ice cold within 10 minutes. The mittens not so much. I am on my third pair and these most recent ones (by NeutraCare) are better, snugger, but still warm up within 20 minutes, requiring me to switch out the ice packs repeatedly for new ones, and seem to concentrate all their coldness on my palms rather than my fingertips. I’ve already lost sensation in the tips of my middle and ring finger on my left hand.
I have at this point spent upwards of $170 on various brands of ice mittens and am now brainstorming how to invent ones that actually work myself and make a million dollars selling them to desperate chemo patients.
While I’m wrapped in ice, I can’t use my phone or computer, so I listen to my sister’s podcast (The Baroo! Number #10 in animal podcasts!) This week’s episode is about Bunny the “talking dog.” It’s good! Dog folks, tune in.
At some point the social worker pops in to check on us, but we have nothing new to report. She complements my head scarf. My hair is looking seriously mangy at this point — no longer the cute skate punk buzz cut — so I’ve been experimenting with bandannas. Sometimes it’s helpful to look like a cancer patient in public, but sometimes I’d prefer to pass.
And then all of a sudden it’s time for the last half-hour blast of carboplatin, and then the nurse slaps the Neulasta OnPro robot onto my upper arm, and once it is blinking green we are good to go: five hours flat from start to finish. Not bad.
Thus ends cycle #3 of chemo. We got smoothies, went home, and continued to try to unpack the kitchen (...). At 6 pm I suited up and went to class but about halfway through the treatment hit me like a sandbag on my head. It came on faster than last time; I wasn’t prepared, and had to sit out the last 15 minutes or so, too tired to keep going.
At home, I used the UberEats gift card that came in Kristi’s care package to order food from the Cuban place down the road. Their sopa de pollo is one of the few things I can regularly eat, and fried maduros are a touch of sweet to settle my stomach. But I still crawled into bed at 9:30 feeling strange, a little nauseated, a little unsettled, wondering if this is the “it gets worse” part, and trying to keep my eyes on the prize of the amazing shrinking tumor.
I wrote most of this at the hospital yesterday, and finished it up just now, after waking up at 5 am. Still feeling kinda shaky and weird but I have an acupuncture appointment soon. I’ve been trying to write something more thoughtful about some of the books I’ve been reading, but that will have to wait for another day. In the meantime, here’s a great article about breast cancer rowing club (aka ROW, or “Recovery on Water”) that just ran in Cancer Wellness magazine. I hope I can make it to practice tonight.
Also! We are closing down the Scrub Hub GoFundMe, after raising almost $3,000. Thank you so much to all who donated. This is, honestly, the only thing I need. I don’t need food (I don’t have much of an appetite), or a lot of extra gear, and I am full up on snuggly socks and robes at this point. But a clean house. Oh god. THAT I need, and I am so very grateful, and deeply moved by the generosity of my friends and family, near and far. Thank you, one and all, and thank you to Zoe my stalwart forever friend, for organizing it all.
Sending, just-- appreciation for the scale of this new world you are tackling, and some love beams. And a big wooo hooo! for shrinkage!
Really appreciate your sharing and the strength you are showing walking this path. Sending all the good mojo I can muster.