Breast, Cancer, cancerversary, Deaths of David Bowie and Glenn Frey, DIEP Flap, dolores o'riordan, Lumpectomy, mastectomy, medical euphemisms, Memoir, Piestewa Peak, reconstruction, Sherman Alexie, sniglets, Surgery, Tom Petty
Profoundly saddened by the recent death of Dolores O’Riordan and news that Tom Petty died of an accidental overdose, I barely looked at the clock yesterday, the way I have done for the past six years, on January 19th. I am loath to declare the date I underwent the mastectomy and reconstruction of my right breast, a “cancerversary,” one of those cheery-sounding sniglets often used to mark milestones for those ensnared within the disease. There are too many milestones – the day a lump is discovered or a diagnosis delivered; the date of a surgery undertaken to remove tumors or breasts or pieces of a lung; the day, five years after diagnosis, when an oncologist makes pronounces NED – No Evidence of Disease.
Maybe it’s because we don’t have the right words to respond to cancer, that we make up others to minimize and manage the havoc of it, to shelter us from it, to make us smile through it even as we are scared. So scared.
Sherman Alexie. says that writers must write about the scariest things in their lives. Intrigued by this advice, I went to hear him speak one evening at the Heard Museum in Phoenix. I took my daughter, in Junior High at the time and immersed in his Absolutely True Diary of a Part-Time Indian. Along with everyone else, we laughed as he shared what were surely the scariest things about his early years on the Spokane Indian Reserve. His own laughter as he described his father’s beverage of choice,”Squodka” – a mix of Squirt soda and vodka – belied, I imagine, the anguish of a young boy confronting the reality of an alcoholic father who disappeared for days at a time. We know Sherman Alexie knows that alcoholism on the rez is no laughing matter.
Nor is cancer. It is a serious disease deserving of serious words, but we do a lousy job of talking about it in a way that confronts the reality of it – beyond awareness – or that leads us to knowing what causes it or how to prevent it. We speak in codes that keep this scariest of things at a safe distance. Code is acceptable in the cancer conversation and not just the pink stuff of Breast Cancer Awareness Month, the “save the boobies” fare. Codes. “Mastectomy,” for example, is code for “amputation.” I wonder. Were I an amputee in the “traditional” sense, would I refer to the day I lost a limb as my “ampuversary”? No. I would not. Medical euphemisms abound. I used to toss around “lumpectomy” as though it were the removal of an inconsequential wart, instead of what it really is – a partial amputation. When I was first diagnosed, I presumed a lumpectomy was in the cards for me. As a word, it didn’t pack much of a punch, so it didn’t frighten me. Then I met my surgeon who pointed out that my cancer was not amenable to lumpectomy given its proximity to the nipple and the fact that I was not endowed with large breasts. Essentially, she didn’t have enough to work with; therefore, the surgery to remove my breast and reconstruct it would be trickier than the “simple” lumpectomy I had anticipated. As her meticulous notes would later confirm, “dissection was very difficult given the very small circumareolar incision used for the skin-sparing mastectomy.” It would require additional time and effort, not to mention skill and patience. So she recommended (and I nodded sagely in agreement as though I knew what she was talking about) a skin-sparing mastectomy which entailed removing only the skin of the nipple, areola, and the original biopsy scar to create an opening – a small opening – through which she would remove the breast tissue. Duly spared – spared, no less – the skin would then accommodate a reconstruction using my own tissue. Simple.
Reading through the details of my surgery, you would never know that cancer and its treatment is ugly or that it hurts. At times it sounds downright regal, befitting a fanfare of trumpets, especially that climactic moment when my breast tissue was “elevated off the pectoralis and delivered from the wound.”
While three surgeons operated on me, my weary husband waited, leaning on our daughter, she on him. It would have been about ten o’clock in the morning when my surgeon came out to announce to them what she would later write, that “the frozen section was negative for metastatic disease,” that there were no abnormal nodes, that no further dissection would be needed. She and my husband performed a silent high-five in the hospital hallway. And, after three hours, she had removed all the cancer she could see and could go about her day, leaving me in the capable hands of two highly sought after plastic surgeons, one being one of the best in Phoenix, the other a master of DIEP flap reconstruction, who had flown in the previous evening from Texas.
They worked on me for the next six hours, and a day later released me back to my life. Six years later, I am told I look just like myself. You would never know, unless you asked to see, or I summoned the courage to show you, that I really don’t look like myself. Not my original self. Hidden under my clothes, since the DIEP flap reconstruction, is a trivial but nonetheless relocated belly button, its circumference now dotted with tiny white scars. Below it, a thin scar, faded to white, stretching from hip to hip, with ‘dog-eared’ reminders on either end where JP drains pulled excess bloody fluid for days after the surgery. I have a right breast too. Sort of. It is in the shape of a breast, impressively so, now that all the post-surgical swelling and discoloration has gone. Its skin is the same, spared by the mastectomy that removed its cancerous tissue through a very small incision around the areola also removed with its nipple.
I tend not to dwell in the macabre, but I cannot help wonder about my old right breast, now a mastectomy specimen preserved in a container of formaldehyde solution. It weighed 294 grams, “the words expressly are ‘a pound of flesh.'”
Contemplating all that has happened in the past six years – the cancer, the death of my daughter’s daddy, the shift in priorities – I suppose you could say what they say in Northern Ireland. “God love her, she’s come through the mill.” Lest I wallow too much, however, there is always the reminder that I could be worse off.
I recall encountering someone I hadn’t seen for a few years, and he asked me if I had read Joan Didion’s Year of Magical Thinking. Yes. Indeed I have. Several times. I know great chunks of it by heart. And then he said, “Well, at least your daughter didn’t die.”
At least your daughter didn’t die.
No. She didn’t. She is right here. She is 20 years old now and beautiful. She is tough without being hard. She is vulnerable without the man who was her first word and who bought her ice-cream every Friday afternoon. She learned to drive without him and walked across the stage to receive her high school diploma without his cheers ringing in her ears. She earned her first paycheck without the winks and smiles that encouraged her to keep being great at at being herself. She completed her Associate’s Degree and is off to complete a degree in Psychology, so she can one day work with young people who have lost parents. Sometimes my lovely girl reminds me of a beautiful bird. Exotic. Rare. Endangered.
On the anniversary of his death, she told me it was beyond her grasp that two years had passed and that one day it would be ten years, twenty years, forty years, since her dad last held her hand in the frozen food section of the grocery store. To keep her warm.
At least my daughter didn’t die.
So I didn’t know what to say to the person who asked me about Joan Didion and therefore said nothing. I should know but still don’t that when people show you who they are, believe them. Instead I reminded myself of Lou Reed’s reminder of magic and loss and of Sherman Alexie who told us that night in the Heard Museum that when we despair at the lack of compassion in the world, we might remember that the world gave us Hitler – but it also gave us Springsteen.
The world gave us Bruce Springsteen.
And Dolores O’Riordan. And Tom Petty. And, yes, the world also gave us Donald Trump. And all the people who say the wrong thing at the wrong time. And somehow we have to find the sweet spot in which to live and die.
Magical thinking . . .
So what will I do to mark the day?
A day late, I may just climb again to the summit of Piestewa Peak in the Phoenix Mountain Preserve. It has been over a year since I sat at the top, and I have missed it. Up there, I will survey the valley below. And, glad to be so high up and far away from where I lay eight years ago, I will weep.
I will weep.