Note: On May 27, 2015 an amazing group of youths from an organization providing rescue and shelter for victims of human trafficking drew around 20 amazingly beautiful unicorn pictures for me, posted for me by team leader Jenni: “My tribe here are survivors of a different type, even still we wanted to send a little B.A. unicorn magic your way. Our thoughts and prayers are with you.”
Hello! I start chemo tomorrow! Why the exclamation marks? I don’t know! But I can tell you I’m excited to get started. I am olympic-athlete levels of prepared here. This morning, I even drank a glass of tomato juice with green-drink powder mixed in. It’s not what nature, or anyone at all, ever intended, but I thought I could kill two birds with one stone so I only had to drink ONE healthy thing all at once instead of TWO healthy things. Any art student can tell you that red and green are opposite (violently opposite) colors and when you mix them they revolt by making road tar. And then I drank it. I’ve gone for a walk, sat in a pretzel in yoga for an hour, bought tomorrow’s already-prepared dinner from the gourmet grocery like we’re planning a party, and meditated on being the most kick-ass chemo patient the world has ever seen, all before noon — ommmmmm.
Well, friends, here I am again, stuck in my bad-news loop. It would seem if anyone could still have breast cancer recurrence after a double-mastectomy it’d be me! Shut the front door! Last I left you, I mentioned my oncologist had wanted me to follow up surgery with chemo, and I was waffling. I’d ended up telling her, “You show me there are cancer cells left, and I’ll do chemo.” This is the last time I dare an oncologist.
Ahead of my routine three-month check up, the oncologist ordered a PET scan, and the scan showed a very tiny spot in the location of the last malignant tumor, though that tissue had been removed and replaced with new tissue. A follow-up biopsy revealed there had indeed been a few stubborn cells that had hung around in the skin layer. I’m sitting here trying to think of a good analogy, and the only thing I can think of is pie. So I’ll move along.
What’s next? I already had my Phase II surgery (which they call the revision surgery — a writer, being revised!) scheduled for May 12, so the surgeon says he’ll “wedge it out.” Those were his words, which I like because it makes it sound like a minor annoyance we can brush aside. Then, I have to make good on my promise to my oncologist and undergo chemo. Again. It’s a different kind, two different kinds to be exact — one I’ll take orally on my own and the other, administered through an IV every three weeks. So this will be my chemo summer, woo-hoo.
My first thought? I melted my wig in the dryer! My next thought? We already booked a week-long vacation in Destin for the girls! We haven’t been able to take them on a true vacation since our cancer journey began in 2013, and if anyone needs a beach get-away it’s those darling girls who’ve spent the last two years praying their mom isn’t going the way of all Disney moms. I asked my oncologist if I could possibly still go if I was on chemo. Last time, after all, I’d taught three classes while on chemo. My oncologist agreed I could handle it.
While I spent yesterday afternoon telling all my loved ones the news, Joe was stressing out about how much our chemo summer would cost us on top of vacation. By the time I came home from the English Department Awards Ceremony at the university last night, though, Joe was himself again. “I decided we’re going to Florida, and we’re going to have the best time. Screw it!”
“Yes!”
No one throws a party like my little sister Alicia. Saturday evening, Joe and the girls and I walked in to find that the best of Pinterest had unfurled across her impeccably clothed tables — appletini glimmering green in a glass beverage dispenser, dishes of hors d’oeuvres with their corresponding labels on golden doilies, gifts for the winners of Bingo and “Name That Christmas Tune” (I won!) ninja-wrapped on the buffet beside a cheesecake the size of our collective gaping maws. Seriously. Pin this on your “Hall of Fame” boards in her honor:
Last family holiday party, I’d just started chemo, and I’d arrived in my wig, red kimono sweater, high heels, and layers of makeup, hoping the toll of chemo wasn’t evident already. That was my goal throughout treatment — to hide it so everyone around me would feel reassured. And my biggest lesson learned in hindsight was don’t bother hiding. The Tennille wig reassures no one.
Three weeks ago tomorrow, I was snapping pre-surgery selfies with my family, a photo which demonstrates that the seven pounds I’d gained for the surgery in two weeks ended up in jowls, which was of no help at all. You might recall my surgery was a mastectomy with DIEP flap reconstruction in which stomach tissues are moved north, all in one go. An eight hour surgery. I don’t remember much of the immediate pre or post op, but I do know that Rutger Hauer was there doodling ancient Sanskrit on a cocktail napkin with a dribbling coffee straw.
In the plastic surgeon’s office, something like a barber’s chair sat squared against a full-length mirror in an otherwise empty room. White. Sci-fi white. After motioning for me to stand, the surgeon attempted to gather a few inches of flesh at my stomach as a nurse stood behind him, looking unimpressed with a pen to a clipboard.
“You’re just so … bloody thin,” he said as he squinted in inspection.
Believe me, I know how annoying this sounds. When I logged onto Twitter later that day and asked if anyone had any ideas for “high calorie, nutrient-dense shakes for healthy weight gain,” six people immediately unfollowed me. Just keep in mind I’d spent sixteen weeks on chemo and turned vegan somewhere along the way.
Well, here we are again, friends, talking about tumors and doctors’ appointments not five months after I’d declared the end of the sad cancer blog. I’d wanted to blog instead about walking that half-marathon in December, but it would seem I really know how to get out of strenuous activities. Alas, I will walk another half marathon at a later date, and crossing that finish line will be all the sweeter. But for now, I’ll tell you a little story about boobs.
Yesterday, I cancer-punched nurse Margaret. (Cancer punch: verb — to blindside innocent party with unprompted news of one’s cancer, often, but not necessarily, at the least appropriate moment.) It seemed clear when Joe and I showed up at the oncologist’s office for our first meeting since the biopsy that everyone was very gingerly preparing us for the bad news of the biopsy results. My oncologist has a strict “no test results over the phone” policy, so, as far as they knew, we were in the dark. As far as they knew. I’ll tell you a secret. I always ask that test results be sent to my surgeon as well because he calls me as soon as he gets them. I’m like the Danny Ocean of oncology patients. Always a step ahead.
And Nurse Margaret looked pained as she settled into her swivel seat at the computer in the examining room.
“Margaret,” I said, “It’s okay. Dr. Fischer already told us about the biopsy results being negative.”
Margaret’s posture crumpled.
“I thought something was up!” she said. “I never look at test results because I’m no good at hiding it when patients walk in. Damn it.” After a long sigh, with her fingers arched over the computer keys, she continued, “Well, let me ask you my questions,” sounding thoroughly deflated, “Are you still taking your Tamoxifen?”
Tamoxifen is the hormone regulating drug some patients are given as a breast cancer preventative.
“Nope. I stopped taking it two days ago,” I told her.
“And why’s that?”
“Because I’m mad at Tamoxifen. It’s like, ‘You had one job, Tamoxifen!”
“No shit,” she said.
If I haven’t told you about Nurse Margaret before, she ‘s great. She once gunned down a ten foot rattlesnake on her ranch and posed with it dangling from her grip for pictures. She claims vegetarian food makes her tongue swell. When she first gave me the after hours nurse phone number and I called it the same day, she answered, “Oh, you think you can just call me whenever you want?” And after she input all of my updated information, she stood and said, “I’m telling on you,” as she let the door fall shut behind her.
“About the Tamoxifen?” I called after her.
“About you talking to Dr. Fischer!” she answered from the other side of the door.
But the oncologist didn’t come in with a scolding. She came in with the contorted head tilt of the completely perplexed. “You shouldn’t be sitting here right now,” she said. Surprisingly not on her list of explanations:
Her best guess? A few stubborn cells somehow got left behind during the lumpectomy and were then resistant to radiation. I’m imagining these cells hanging out silently chain-smoking in white.
This was echoed by the plastic surgeon I met two hours later, the one who compared the DIEP flap reconstruction process to Big Mac layers and told me to start inhaling donuts to gain weight before the surgery, AKA My Favorite Plastic Surgeon. “You should have met with me back then,” he lamented. “I would have made you do the mastectomy.”
Ugly truths time. And I want to be clear about how moronic my reasons had been that first time so if you are in the same predicament you won’t repeat my mistakes. The fact that I thought Guardians of the Galaxy gave me cancer again is proof in itself that I should not be trusted with major decisions. More evidence: I decided a mastectomy would have taken me away from work too long. The surgeries required for someone just off chemo sounded numerous and extensive … based on what I found on the internet. The terms “DIEP flap” and “nipple reconstruction” sounded like something from Saw. I liked my boobs (emphasis on past tense — I’m over them). To paraphrase Shakira, they might be small and humble and not to be confused with mountains, but they’re mine. The worst reason? I decided, without talking to Joe about it at all, that Joe would see me as deformed and our marriage would be kaput. Chemo had already made me feel monstrous enough. I know. I told you they were ugly truths.
There’s a scene in Dallas Buyer’s Club in which Matthew McConaughey’s character takes his doctor, played by Jennifer Garner, to dinner. He wears his best cowboy hat, brings her a framed painting of flowers, clearly has romantic aspirations the viewer knows aren’t likely to materialize. He’s an emaciated, terminal HIV patient with possibly only months to live. As he sits across from her, settles in, he says something like, “Nice dinner. Pretty lady. I almost feel human again.”
That line crushed me. That’s the secret fear of the toll of hard fights, of the toll of serious illness — that we’ll be rendered inhuman, unlovable, desexualized.
But, to quote Dr. Malcolm, “Life finds a way.” And in my case, life found a way to make me do what I should have done the first time around. Full mastectomy with reconstruction.
“Like, yesterday,” the oncologist said.
She tells me I’m such a strange case that a board of breast cancer specialists will be convening to go over my records. After the surgery, the removed tissues will be “genome profiled” to try to isolate and define the mutation in my DNA. They will grow the tumor in the lab for research purposes, to study the behavior of these cells, to test the types of cancer treatments they respond best to. “They’ll transplant little pieces of the tumor into mice,” the oncologist explained. (My sister Michelle called this “The Cindy Project” when I told her.) And when the oncologist left the room, I turned to Joe and said, “Aw! I want one of my little mice when they’re done with it!”
Then Joe pulled the same wide-eyed, ironed-flat expression he gets when our kids ask if he’s Santa.
My posture crumpled.
“Oh. Oh!”
“It’ll be like the monkey in Project X,” he said.
We were both sitting there morosely doing the “Virgil, apple” sign when Nurse Margaret came back in with my flu shot. Now I’m feeling a little conflicted about “The Cindy Project” …..
Months ago, still on chemo, I’d stopped at a gas station, wearing a head scarf and the free breast-cancer-awareness t-shirt my oncologist had given me the first day we’d met. I’d grown tired of the wig already. It felt like hiding. The girls, for whom the wig was intended, had gotten used to the sight of my head capped with something a little less disguising. They waited on me as I angled the gas pump, the sun low over the pecan trees and palms, Hannah in the front seat, the Firecracker covering her knees in grocery store stickers in the back. Then a woman in a fitted pant suit and kitten heels stepped over the sagging line of her own gas pump to cross over to me.
“I want you to know I love your shirt,” she said, “and you’re going to be fine. I was there fifteen years ago, and I assure you. I assure you. It doesn’t feel like it now, but life is going to be back to normal soon. This is just going to be something in the past. I just wanted to tell you that.”
“Thanks,” I said in the southern drawl that irons out my syllables whenever I’m pushing myself to be particularly sociable. “It’s always good to hear those stories!”
“Don’t forget,” she said before clattering delicately on her kitten heels back to her car.
Hannah wanted to know what she’d said. I told her.
“That was nice of her!” Hannah said.
I agreed. It was very nice of her. Hope so elegantly demonstrated is always nice. But there was a little voice in the back of my mind saying, this lady doesn’t know — she only knows how it worked out so far for her. I returned to the driver’s seat and looked over my shoulder to back out, looking past the tangles of cords hanging from the ceiling of the car where the DVD player used to be. That day I had my mammogram and sonogram films to take to the surgeon, that day I picked up the Firecracker and wadded up her drawing and strapped her into her booster seat, she was so mad she kicked the DVD player until it fell off. That’s one thing I didn’t describe in that first blog post about the Day One Monster, but that was a monstrous day indeed. Ever since, the cords snake out in every direction, a snarling reminder, waiting for something to snag.
* * *
When I was just a little older than the Firecracker, we used to park the station wagon where San Pedro Avenue met the edge of the airport’s chain-link perimeter fence and wait. Over the rooftops across the street, a dot on the pink horizon, commercial jets slowly descended, stirring our hair and shirt collars as they roared overhead and angled for the runway. I never looked right at an airplane, because if I looked right at an airplane it would crash. So there I was on the hood of the car, giving the 6:20 from San Francisco the side-eye. It’s kind of why I looked away from the magazine stands that stocked Joan Lunden’s recent People cover.
It’s why, two days ago, Hannah and I searched for the remote in the sofa cushions while on the nightly news women in pink shirts of their own lined up on barstools to talk about Breast Cancer Awareness Month.
“I think I’m aware,” Hannah said, switching it off.
Even now, as a fairly rational grown person, I’m burdened with my own superstition that if I stare too long at the precarious, the precarious unravels into tragedy. What I’m really afraid of, of course, is that this tragedy will be my own.
Yet when the surgeon called with the results of my first biopsy since being declared cancer free in April, it didn’t feel, as it had the first time, that things were quickly coming undone. The first time, I’d canceled class and sat at home until I could hug the girls right off the bus. This time, Joe actually talked to Dr. Fischer because my evening class was already under way. During the break, I stepped into the hallway to check my phone. Joe had me on speaker in his car, driving back with the girls from dinner.
“Did you talk to him?” I asked, cryptically.
“Yeah, he called,” Joe said. And there’s this little thing Joe’s voice does when he’s preparing his words to hold the weight of bad news. He speaks a little higher. So I knew.
“Did he tell you?”
“Yeah. I have the girls with me,” he reminded, “on speaker. We’re headed home from dinner.”
Now I really knew.
“Well … is it ‘yes’ or ‘no’?”
“Yes,” he said with feigned weightlessness.
And then I walked back in and taught the second half of class.
* * *
Life is going to be back to normal soon. Driving home from workshop, I steer past the gas station, dimly lit, empty of cars. Mine is a quiet neighborhood. Silence sprawls out across lawns as my headlights glide past pumpkins on porch stoops. These are the streets I’d been walking with the intention of readying myself for a half-marathon in December. I’m not sure if I’ll be able to walk it now. I hope I still can. Last week, I’d sat with a colleague who’d told me about the Rome Prize.
“If you’re selected, they pay you to take your whole family and live in Rome and write for a year,” she said.
“That sounds perfect,” I said. “I’d love that.”
But even then I was thinking I can’t really plan too far ahead. I can’t go that far away.
Like most breast cancer survivors, I always had the possibility of recurrence at the back of my mind. I’d just read an article about a woman who wasn’t even a year out from her first round of chemo treatment, and there she was shaving her head again, in tears, her whole family around her in tears. As I read it, I thought, “I’d lose it if that were me. There’s no way I could take that again.”
That’s kind of been me every step of the way. There’s no way I can have surgery. There’s no way I can have a mediport installed. There’s no way I can undergo chemo. There’s no way. I don’t have it in me. The first time, my surgeon told me I’d surely need chemo, and Joe and I both thought “nope.” We thought we’d meet the oncologist and come up with a genius alternative plan, but the oncologist didn’t see me as a candidate for any alternative plan.
“Will I lose my hair?” I asked her.
“And eyebrows and eyelashes, most likely. But they’ll grow back.”
And in a second’s time, something strange happened. I could suddenly see myself being this person, then being well again on the other side. I could see that I had to do it, and it became perfectly plausible.
“Where do I get a wig?” I asked.
“You can use the Nikki Sixx wig at the Halloween store,” Joe helpfully suggested.
As I drive home now, on another cool Monday evening almost a year to the date, a new ¾ centimeter mass nested under my seatbelt strap, I’m not upset. My mind has made that turn toward action. When I walk in, Joe and I start researching the list of breast-reconstruction surgeons Dr. Fischer gave him, all of us ready to attack the second wave with a full mastectomy. We don’t mess around.
And if you’re feeling like attacking something as well, maybe consider donating to the Thrivewell Cancer Foundation that funds cancer research and runs the terrific, free DIVA program in San Antonio designed specifically for breast cancer survivors. Take that, cancer!
Okay, friends, now that you have a little motivation, some proper shoes, and possibly a Fitbit, it’s time for the training plan. Drill Sergeant Joe emailed me a spreadsheet, detailing how often, how far, and in what length of time I should walk every week. Feel free to follow it with me, whether you’ll be in San Antonio in December to watch me face plant in front of the “lag wagon” half way through or are supporting from afar. (You read that right – “lag wagon.” Remember when I joked there would be an official who could scrape me off the asphalt, pour me into a golf cart, and convey me back to my car that unfolds into a movie theater playing a Rocky marathon”? Turns out that’s half true!) Happy walking, team.
Tagged: #teammonster, half-marathon, marathon, training, walking
It’s 10 steps from my office to the closest bathroom; 99 steps to the furthest bathroom. Roughly 3,341 steps from my front door to my office, and most frequently 35 from my kitchen to washing machine. Yes, I have a Fitbit.
In the mid 1980s my cousins and I paraded across the kitchen floor, wearing our grandparents’ pedometer, a machine roughly the size and design of a post office timestamp. A loud click poorly documented every other step or so. Fast forward some twenty years and I’m outside my classroom with a yardstick measuring a colleague’s footsteps. Her average gait is 25 inches compared to my 22.5. We’re both wearing bulky pedometers that eat the same batteries as hearing-aides. But 4,217 steps later we can see most of the San Fernando Valley nestled under a hazy marine layer. Below Fryman Canyon our jobs as high school English teachers, cell phones, and cars wait while we talk about our families, what we’re reading, our childhood— anything we don’t have to fact check.
Tagged: Fitbit, pedometers, Rachel Morgan, walking
