Last Wednesday, I walked past a woman in the waiting area at the lab where we get our ports set up and our blood drawn. She had pink hair, a sequined cap, which she told me was hand-crocheted in Italy (she turned it inside out so I could appreciate the handiwork), and she was wearing a Ralph Lauren jacket and a fur stole. I’m guessing she was somewhere around 80.
The week before, I admired two youngish women in bright colored onesies with tails. They told me they wanted to inject some whimsy into the chemo experience.
I get it. Though not nearly as creative, I dress with care on chemo days, trying to look as pulled together as you can look in stretchy pants (there’s a lot of sitting), a low-cut top so the nurses can access my port, and my warm layer - a sweater, a shawl, a vest. I always wear interesting earrings and lipstick, even though I’m in a mask most of the day.
Life is full of surprises. A year ago, I was at a work retreat in Munich, tasting Icelandic fermented shark (hakarl), washed down with aquavit - a combo my Icelandic colleagues dared us to try. A very different kind of cross-cultural adventure than the one I am currently having.
It’s a diverse sea of humanity, this chemo-land, and we all want to express our individuality. Our ensembles are clues to the people we were before cancer came to dominate our lives. We are still those people.
Infusion Wednesdays, which have stretched as long as seven hours, and now hover around five hours each time, break down as follows:
First stop - Second floor of the Cancer Institute, where we check in and get the aforementioned port hookup and lab work. This is my first opportunity to check out everyone’s head gear. Up until recently, I didn’t wear/need any, and I felt kind of guilty for flaunting my fullish head of hair. But as I’ve gotten more Filch-like, I feel the need for cover in public spaces.
I’m getting to know the Wednesday crowd. Each week, I look forward to seeing what one particular tall, slender African American woman is wearing. The first time I noticed her, she was wearing a gold lame cap with the word Queen embossed in black on the front of it. She always wears three-inch heels, which impresses me. I wear Uggs or galoshes if it’s raining in Seattle and switch to those hospital socks with tread on them during infusions so that I can recline comfortably and not slip when I maneuver my IV cart across the corridor to the rest room.
Turns out, the sequined-capped woman is a Thursday regular. She expressed dismay at our busy Wednesday scene, so I may not see her again. I hope I do.
Second stop - Fifth floor - where the oncologist reviews my side effects of the previous week and that day’s blood work. What passes for a thrill these days is to sit in the waiting area and watch for the notification on my phone telling me my lab results are in. I expertly scan the white blood cell counts, especially the neutrophils. Mine had gotten quite low, compromising my immune system, thus necessitating the need for me to inject myself with growth hormones twice a week and take Claritin every day to prevent muscle aches. They are better now, but the red blood cells are waning. I’m more tired than I was at the beginning of chemo and am slightly anemic.
I don’t enjoy the weekly weigh-ins, which remind me of pregnancy weigh-ins. I generally weigh a pound or so more each week, with no baby to show for it.
Thank you, steroids.
“I am advised that it [chemotherapy] also causes hair loss and weight gain (although I am still holding out hope for the kind that causes hair gain and weight loss).” Congressman Jamie Raskin
Me too, Jamie. Me too.
Third stop - The infusion center, usually on the third floor, though once I went to the spillover area on the fourth floor, which says something about the prevalence of cancer. This is a well-oiled machine. They set us up in a cubicle, cover me with a blanket fresh out of the heater and get cracking.
First up - pre-meds: anti-nausea drugs, Benadryl, steroids. They make me sleepy. Next, immunotherapy, which takes about 30 minutes. That’s a convenient time to eat lunch, do puzzles, read. Finally, chemotherapy, which takes an hour or so.
This is the challenging part. To mitigate hair loss and prevent neuropathy, I wear a cold cap on my head and chilled booties and gloves on my extremities, which I then place in buckets of ice. Being tethered in this way made the hour feel unbearable, until we hit on the perfect distraction — watching the quirky British spy thriller, Slow Horses.
If there is someone in the cubicle next to me, I admonish J to turn down the volume, as the show opens to the jangly sounds of Mick Jagger and is full of jocular profanity.
Slow Horses is a wild ride that makes the chemo infusion fly by. We are rationing the final season to see me through my last month of treatment.
We come home, tired and grateful for the Wednesday dinners provided by our friends each week via a Meal Train schedule.
The Myth of Sisyphus
There’s a lot of talk in the New Year pro and anti-resolutions, promoting dry January and damp January, goals vs. rest, choosing a word of the year, and the fact that calendars are a somewhat arbitrary construct, so why are we focusing on self improvement in the dead of winter (hemispherically speaking).
I feel like Sisyphus every week, as I strive to make the most of my good days, weather the bad ones, and — hardest for me — accept the unpredictability of it all.
Each week has some surprises in store, so in that sense it’s a little like being a character in a quirky British spy thriller.
My one constant is starting each day with Yoga with Adriene, no matter how crummy or tired I feel. It is the only time I feel completely in control of what’s happening to my body.
Thanks to the steroids and Benadryl, I often can’t sleep on Wednesday nights. This past Wednesday I was up almost all night. I’ve read that you are supposed leave your bedroom when experiencing insomnia, so at around 3 am I ventured downstairs. I finished the book I was reading (Kristi Coulter’s Exit Interview, about her time working at Amazon), while munching on leftover Brussels Sprouts salad. Neither was what I would call relaxing, but they did the trick. By 5 am, I was back in bed asleep.
Little did I know.*
Thursday mornings are always a race against time. I know the steroids will soon wear off, unmasking the side effects of chemo, so I hustle to do yoga, go to the gym, run errands, do laundry, write, cook, eat things I like, and basically do anything that requires energy.
Because Friday is Molasses Day. The steroids are gone and so is my energy. My mouth tastes like metal and my stomach is fussy. I do yoga and whatever workout I can muster and often lie around for the rest of the day and eat bland stuff.
Saturday and Sunday are resurrection days — more exercise and activity, coffee, spicier food. But sometimes weird, random side effects appear. This week, it was neon yellow pee, which we deduced was from a new B-vitamin pill I had taken.
Unlike most people, I look forward to Monday. Monday and Tuesday are my glory days and I try to make the most of them, staying outside as much as the weather permits, being as active as I can be, eating real food, not sick person food.
And then, Wednesday rolls around again and it’s time to start pushing the rock back up the hill.
The Best Things I Cooked This Week (*turns out you can eat too many Brussels sprouts)
‘s Crisp Gnocchi with Brussels Sprouts and Brown Butter
A Garlicky Shaved Brussels Sprout HullabalooA few years ago, I had an intussusception of my large intestine, necessitating emergency surgery, three months with an ostomy bag, and reversal surgery. During much of that time, I was forbidden to eat fibrous foods, including crunchy vegetables.
That’s when I found
‘s Crisp Gnocchi with Brussels Spouts and Brown Butter, a NY Times Cooking recipe (see gift link above). In addition to checking out her Substack, , I also recommend you check out her book, I Dream of Dinner (so you don’t have to). The minute I got the green light, I enjoyed the crispy, crunchy gnocchi Brussels sprouts combo and every now and then I get a craving for this that cannot be denied.Last Thursday, I rushed home from the gym and made it, setting off the smoke alarm (that’s how you know you’ve gotten just the right amount of char IMHO) and munched my way towards happiness. By that evening, my stomach let me know that it was time to move onto the mushy food part of the week.
But I wanted more. So when I recovered, I made a huge batch of
‘s A Garlicky Shaved Brussels Spout Hullabaloo. We had it for dinner a few nights, I had it for lunch one day, and I had it during the aforementioned Wednesday night insomnia extravaganza. What crunchy bliss!This recipe is behind a paywall, but I have two trial subscriptions to Emily’s brilliant Substack, The Department of Salad: Official Bulletin. Let me know in the comments if you want one.
That was me at the hospital this Friday having an abdominal x-ray to determine the cause of my debilitating stomach pain. Luckily, it wasn’t an intestinal blockage. Just an overabundance of Brussels sprouts enthusiasm, resulting in a true hullabaloo.
I wonder what next week has in store for me.
I am also doing Adrienne’s 30-day yoga journey, first time I’ve ever stuck with it (I did a lot of her videos during Covid’s first two years), and now I will be thinking of you on the other side of that screen, soaking up some vicarious Benji love.
So interesting to read some of the comments on this piece! Disappointing yet not surprising that cancer support treatments for women haven't advanced that much in the past decades. Sending love and continued support, Alison, and looking forward to bringing you into my Womancake interview zone :)