Tags
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 a pronouncement of NED – No Evidence of Disease.
Maybe it’s because we don’t have the right words to respond to cancer, that we make up other words – to minimize and manage its havoc, to shelter us from it, to make us smile through it even as it terrifies us. We are terrified.
Sherman Alexie. says that writers must write about the scariest things in their lives. Intrigued by this advice, I bought a ticket to hear him speak one evening at the Heard Museum in Phoenix. Accompanying me was 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 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 would disappear for days at a time. I 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 its reality or that leads us to knowing its cause 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 in the pink stuff of Breast Cancer Awareness Month – “save the boobies” fare. Codes. “Mastectomy,” for example, is code for “amputation.” It makes me 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.
The Accidental Amazon said:
My own tears are welling up right now. I hate the medical euphemisms. Don’t even get me started. I’ve written numerous blog posts about this, so I won’t belabor the point here, except to say I agree with you entirely. I’m also stunned that this person could comment upon your husband’s death by saying such a thing about your daughter. I absolutely abhor that, ‘it could be worse’ mentality. It could be, but whatever catastrophe these idiots are commenting upon is bloody bad enough. Comparing it to what might be but isn’t is utterly pointless. If you don’t know what to say, shut the hell up. Ya know?? Hugs, dear one. Thank goodness some of us ‘get it’ and love you. xoxo, Kathi
Editor said:
Well. Now of course that I’ve had time to think about it, I kinda know what I should have said to him. Shocking, isn’t it?
But yes. The ‘It could be worse” mentality is just so offensive. I hate it xo
The Accidental Amazon said:
I never cease to be shocked when someone says something so hurtful to me. I almost never think of a good rejoinder in the moment. I may regret that later, but in a way, I’m glad I am still capable of being shocked, because it means I have not grown comfortable with that kind of nonsense. xoxo
Editor said:
O that is such a good way to look at it. You’re right. But still. What a bastard gobshite.
nancyspoint said:
Hi Yvonne,
This is so poignant. So beautifully written. I loathe so many of the cancer language words used too. And like you, I believe a mastectomy feels much more like an amputation. Why is there this tendency to gloss over the harshness of cancer, especially breast cancer? And I am speechless about that comment, “well, at least your daughter didn’t die.” Lordy, talk about insensitive. That “it could be worse” mentality is so hurtful and just plain wrong. Thank you for this post. Weeping with you from a far. xx
Editor said:
Hey Nancy – yep. I don’t understand it. i really don’t. It’s reached a kind of acceptable level, as the poet Damian Gorman once said of the troubles in Northern Ireland – “the heart has grown numb”
Yes. That comment – once it sunk in – left me reeling.
xo
Dale said:
I cannot begin to imagine what you went through in the past three years. Well, part of it I can but not the cancer part. I am surrounded by cancer survivors and no one has ever spoken about it as you just have. Thank you for sharing your experience. The callousness of some people never ceases to amaze me. Like the doctor who told me, while my husband lay in a coma, “I saw his scan. It is catastrophic.” Then he gave me a little punch on the arm, turned around and said: “Good luck.” WTF?
“At least your daughter didn’t die.” Again, WTF?
Editor said:
Wow. I’m so sorry. Jesus Christ.
Dale said:
Some just don’t have the desired bedside manner… Such an ass he was.
Greet Grief said:
It’s so important to continue to weep especially those of us who endured multiple griefs in a short period of time. We forget that we often are so busy at the moment that the true “grief work” doesn’t happen until months/years later! Pat yourself on the back for weeping and for continuing to climb high! Blessings on your journey.
Editor said:
Yes. Thank you. Oh, believe me, I have no problem weeping – or laughing – whenever I need to. I’m not one to hold anything in. It’s either take me the way I am and accept all I bring with me, or not. 🙂
dannithel said:
I found this absolutely moving. I won’t begin to say I understand, but will instead remark on your incredible understanding and patience with the world. To have been through so much and come out unbroken. Not only unbroken, but with the courage to share your thoughts on this. Your post reminds me that everyone grieves in their own way, and though I may never be able to see your life through your eyes that is exactly what makes us human. Be angry, be happy and please keep writing these beautiful entries that remind me to take a step back and look at life from broader horizons like the top of Piestewa Peak. Thank you again.
Editor said:
Wow. Thanks very much for stopping by and for remarking. I don’t know . . . I’m a bit broken, I imagine, but so is everyone else. One way or another . . . and yes, the view from up high really helps with gaining perspective. I love it up there. Thanks again.
sherrifillipo said:
Reblogged this on Sherri Fillipo and commented:
I don’t know if there is anything to add. This article brings back so many memories. God bless her to have the death of her husband added to the mix. I have read the book, The Year of Magical Thinking that she speaks of. I would recommend that book if you are grieving the loss of a loved one.
Editor said:
Thank you. It is a great book, but the one I turn to over and over is Meghan O’Rourke’s “The Long Goodbye.” Her articulation of grief and mourning and how each is distinctive, held me up. It really did.
Katherine said:
Oh my goodness, you are a wonderful writer. I hope your walk was enjoyable and the tears a release.
Editor said:
It was great. No better place to be than way up there 😉
Pingback: Weekly Round Up: On Death And Dying | Journeying Beyond Breast Cancer
Christy Anna Beguins said:
And right now I weep with you.
This was heart-breakingly beautiful.
Words fail me, so I will just say, “thank-you.”
Peace, Christy
Editor said:
Thanks so much Christy. BTW before I was diagnosed with cancer I started running with the couch to 5K program as well. I think it saved me from myself 😉
Visited your blog – it’s great & you have quite a following. Well done!! y
Christy Anna Beguins said:
You’re very kind, thank you.
Running and writing have both kept off many a ledge. I lost both my mom and aunt to cancer, so thankfully running and writing are healthy alternatives for me to process my grief.
I was happy to find your blog via a Facebook group you had posted to. You write beautifully. I’ll be following. 🙂
– Christy
Editor said:
very sorry to hear about your mom and your aunt. Cancer is relentless. I don’t run as much now (knees can’t take it) but love to hike and Phoenix is the perfect place for it.
Thanks for the kind words – much appreciated!
y