Inheritance #1 Family History

There’s a comradery that develops in mammography waiting rooms – a group of people all wearing what my grandmother used to call “Split-Ass-Nighties,” trying to maintain a semblance of modesty as we juggle water bottles and phones – whatever we might have brought to stay connected with our lives outside these clinic walls. All this as we wrangle the inevitable clip-boards and pens, so we can fill out our inevitable pre-mammography questionnaires.

Date of first period, date of last period. (Last as in most recent; and as in last ever are covered by that one.) Estrogen consumption (birth control pill and HRT). Previous breast operations: benign/malignant, left/right/both. Pregnancies. Gynaecological operations. Are you in full possession of your uterus? It’s 11 a.m. Do you know where your ovaries are?

I look around sometimes and wonder if anyone else in the room feels uncomfortable ... or if anyone doesn't. Body parts, and life events typically associated with "femaleness" are also often associated with trauma, confusion and grief.

There was a 90-year-old woman beside me a few months ago. She said she needed help with the questionnaire, and a kindly volunteer took the clipboard from her. Soon, the nonagenarian’s purpose became clear. The shy, resigned smiles around the waiting room became guffaws as she turned the interview into a performance for our benefit.

 “ARE … YOU … PREGNANT?” (Shouted.)

 “ARE … YOU … KIDDING?” (Also shouted.)

 “ANY … OTHER … HEALTH … ISSUES?”

 “How much time ya got?”

She then announced to her audience that she’d had breast cancer years ago, and look at her now … still doing well at 90.

“So get your mammograms, gals.”

I appreciated the injection of humour, not just as a distraction from my own accustomed dread of the procedure and the anxious wait for results. It was a reminder that, even in a Split-Ass-Nightie, you can still take charge.

The form also contains questions about familial breast cancer. My mother had it at 37. I have to write that every time I get a mammogram. And every time, just as I’m standing trying to wiggle one elbow out of the S-A.N. … just as the bow at the back of my neck comes undone and I have to catch the fabric before it tangles around my feet, the technologist asks: “So, your mother had breast cancer at 37?”

Sometimes, I don't fill out that part of the questionnaire, to avoid having to talk about it when I’m half naked and about to clasp a medical device in an intimate embrace. Sometimes I put: “No change since last time.” I’ve been known to snap at the poor person who has been instructed to ask the question, and who, after all, is going to make my stint on the infernal machine as comfortable as possible, and who, after all, is in the business of saving my life. In a procedure that takes minutes and is fully covered under OHIP. So I should get over it. But I get bitchy sometimes and say: “Yes, my mother still had breast cancer sixty years ago. And she’s still dead. Of something else, in case that matters.”

As I have crossed the line between potential and actual cancer patient, the questionnaires have become more detailed. Every familial polyp and mole must be recorded, in as many relatives as I can remember, for as far back as I know. It might be an occasion to visit Ancestry website, but – I’ll save that rant for another post – I refuse. Instead I rough them in as best I can.

I feel old filling out the questions. I have no elders left to ask. Details have been lost through emigration or estrangement. Or just time. Some of my grandparents were born in the 1800s. I wonder about someone who’s been adopted, scooped, forced to flee the country where their ancestral stories live? How do they feel filling out this questionnaire? I’m supremely fortunate to have even a rough idea. Actually I can assemble quite a few relevant details. Incidences of cancer shine through where other life-events are lost to time.

This exercise is all to determine risk, and it might just help me get the more extensive screening protocols I need. The questions are to help me, but they also make me panic. Each one of these incidences is a story. My relatives who had cancer all had their first signs: that morning cough, that lump in the breast, that tickle in the throat – they all had their own investigations, their own waiting periods. The feelings surrounding these stories crowd in on me. Or maybe they’ve been inside me all along.

Not only are genes passed down, so are experiences of illness. My mother’s cancer experience included her memories of being a child diagnosed with “failure to thrive,” her long hospitalizations as a toddler at a time when parents were only allowed to visit once a week, the way she was treated as a school-girl in leg braces and special shoes. And all that is in me.  

I wrote about my mother’s breast cancer, in my (as yet) unpublished memoir: “The Last Time We Were All Together.” I'll share it here. The passage takes place in 1967, and my mother’s name was Hetty. She had lupus, but at the time of the excerpt, it had not been diagnosed.

**

My mother stopped going to work, and spent days in her nightgown. This illness went beyond her usual, ever-shifting cloud of symptoms. It had a name: breast cancer. Or at least, something resembling breast cancer. I heard that she discovered an irregular lump and had surgery to remove it, but the doctors decided her breast was so small they might as well take the whole thing. No one warned her of this possibility. She went under anaesthetic thinking she’d lose the frightening lump, and woke up without a breast. I knew all this at eight? Yes. I must have been let in on the story as it unfolded. I also knew it was a secret. I was let in on the story, and the need to be secretive. The word “cancer” was spoken in a whisper. Her breast was one of the many parts of her body she considered inadequate. She recited them regularly: My flat chest, my big teeth, my fat legs, my funny feet. The breast was too small. Of course, it had been afflicted; of course, it had been cut off.

Our apartment was kept dark and hushed for Hetty’s recovery, and this went on for what seemed like forever. Eventually it became clear there was something else going on. A nervous breakdown. The doctor came and went from the bedroom where she had taken up residence. So did our housekeeper, Mrs. Connolly, carrying bandages and a basin. She wore a look of profound consternation, as if she had drawn off some of the pain from my mother’s wounded chest to carry, herself. One day, a kind of doctor called a Shrink came to visit. He sat in Hetty’s room and they talked in quiet voices. Whispered by my grandmother: Her womanhood! … The shock!

Cancer: did I understand that it could have killed my mother? This concept did not take shape, but I understood she was seriously ill. What was it? A lump, a lump that, when removed, took more of Hetty’s body than she bargained for, causing her immeasurable shock and grief, causing her to feel blighted. But she already felt blighted. Her fatigue, the pains in her joints, her anger and disappointment, my flat chest, my big teeth, my fat legs, my funny feet, and most of all her left-alone-all-nightness. It wasn’t my father; it wasn’t his “chickiboos,” as she called them. It was something about my mother that made this happen. The way she felt about it made it happen. There was a cloud surrounding her that I had no name for. In years to come, I would learn to call it “shame.”

Later: I watch her standing in a darkened room in front of a mirror, adjusting the bodice of a wine-coloured velvet minidress. This is the first time I hear a sentence she will go on to say all her life: “I’m not all there.”

** 

It took me half a century to be able to write that and even longer to feel I could share it. Even now, I wonder if it’s better left alone, forgotten along with other details of my childhood, this event that happened behind closed doors in so many homes. So deep was the secrecy and shame, not just in our household, where illness was fraught in a thousand different ways, but in the culture of the time.

Now, breast cancer is not just part of my past but part of my present. This is not my mother’s cancer. I am with a loving, loyal partner who’s with me every step of the way. I live in a world where the stigma of cancer is falling away, where treatments are getting less draconian. Thanks to contrast mammography, my cancer was identified before it could spread too far. Thanks to MOLLI seed technology, the doctor was able to isolate the exact part that needed to be removed, take what was needed for my safety, no more/no less. Hers was then, mine is now.

But the present is not just the present, despite the exhortation to take things one day at a time. We make choices every day based on what we think is going to happen a week, a month, a year from now, and beyond. That came home to me this spring, when I had to cancel a fellowship because of my diagnosis. One day I was deciding which suitcases to take to Berlin; the next, I was looking through my closet for clothes that button up in front because I wouldn’t be able to lift my arm for a while. Each day is suffused with the imagined future, the echo of the past and the stories we tell ourselves about both.

My past is part of my present. Not just my mother’s cancer but the shame and fear it brought out in her, on top of her past traumas. And there was my own years-long fear, perhaps even certainty, that I would get it someday, myself. That slow-brewing dread only magnified my fear when the diagnosis actually arrived.

A mother’s body/a daughter’s body. Were we enmeshed in an unhealthy way? Lacking boundaries? Sure, but I’m tired of that conversation. Healthy or unhealthy, it just was. It just is. I can’t choose my ancestry or my upbringing; I couldn’t help getting cancer, but there is a choice I can make in all this. My cancer will not happen in a closed room.

A big caveat ... I don’t mean to say sharing freely is the best way, or judge anyone else for their choices. I’ve heard many reasons why someone might want to keep this news private. Some people prefer to keep health issues to themselves, and basically, it's no one else's business. Writing just happens to be my own way of making meaning from the situation, and I'm fortunate enough to have little to lose in doing so.

A big thing I've learned ... When I tell my story, I hear stories. They're all so different. Cancer demonstrates how much variety there is among human beings. A lot of people get it, but there are so many different types, arriving in so many different ways, in so many different lives. Treatments vary. Responses to treatments vary. Choices vary. This diagnosis and everything that surrounds it has been an exercise in respecting differences.

Now, I'm slipping into the territory of my next post, about professional inheritance ... so I'll leave it at that.