Breastless Love, The Man Who Stayed with the ‘Sick’ Woman

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In my posts, the fact I stumbled upon the love of my life at age 58 was an aside, like Decker guided me through the cancer swamp as expected of an old stalwart. Reality check: we’re a new couple. He didn’t have much invested in ‘us’ when my breasts tried to kill me.

My choice was between breasts or death in four to nine months. Easy peasy. Decker got to decide whether to stick around for the medical crap. Whew; he chose to. Cancer support groups are filled with women whose partners left. Heartbreak on heartbreak. Like piling on in football without penalty for being last ‘man’ on the guy down. As if getting cancer was being unfaithful: “What – you went to bed with Cancer? How could you betray me with Cancer? Well, now that you’ve chosen Cancer over me I’m leaving.”

Women (or men, or children – cancer is so democratic) have to deal with threatened lives, medical uncertainties, activities disrupted, hideous side effects, and bodily insults. Then the person we count on gets a free pass on the blood, vomit, infected sutures, bulbs of sloshing lymph fluid, low blood counts, shakes, tears, pain, physical scars, and emotional turmoil. Jeez, how could anyone willingly give that a miss? So no one had to tell me Decker’s a gem for staying.

Diane and Dave, 1989

Our father stayed. My lovely sister Andria and I had a disabled mother who underwent countless medical procedures for multiple medical conditions and a constellation of physical complaints. Mom and dad’s mutual verbal abuse was so miserable some relatives refused to visit us. Yet, our folks stayed together until they passed away and, in Andria’s version of the story, they loved each other.

So I asked Decker, ‘what’s the reason you stayed?’ and his expected response: ‘I love you.’ Too simple? He said, ‘sometimes simple is true.’ Yet, an Internet search ‘men leave sick women’ reveals women are six times more likely than men to be left after a cancer diagnosis.

There are also same-sex partners, families, neighbours and best friends who are too busy or can’t accept the neediness of the woman who once did everything and now needs help. In support groups, I listened to abandonment SLS (Shitty Life Stories) and wondered how I was so blessed, in addition to Decker, with friends, family and neighbours who brought food, offered to shop, helped walk puppy Trail, and called to say hello.

There were delightful welcome surprises – my dear cousin BonnyBonny Gold-Babins and I became much better friends. She’d done her stint twice over nursing her lovely parents through chronic illnesses, and still had a soup pot of caring for me.

But other women similar to me weren’t so lucky. It’s easy to blame; we all have villains, victims and heroes in our SLS. BUT, I practice Appreciative Inquiry and I blog at the intersection of what Conflict Competence teaches about Living Breastlessly. Conflict Competence speaks to the quality of relationships we want whether we’re well or sick, or are the friend, neighbour, or significant other to that sick person. How do we make and maintain the loving, trusting, there-through-thick-and-thin bonds that sustain and nurture us even at our worst?

An Internet search for why people stay to help sick partners and friends turned up – wait for it – NOTHING. The focus of the research is on the negative, the losers, the leavers, and the lovers who abandon. They don’t have a name. The people who stay get a name that’s more a label: caregivers. A search about caregivers led to how to become a caregiver, government benefits for caregivers, products for caregivers, and managing caregivers’ strains and stresses. Staying with a sick person is both an act of love and a profession.

We could ask Appreciative Inquiry questions, and research men’s reasons for staying to learn how staying can be an easier and higher quality choice. What made my father stay with my mother, particularly since they fought just about all the time about almost everything? What did Decker see that made the love worth hanging on to? And let’s get to the real heart of it: What can I do, every day with every person I treasure, to let them know I love and value them, appreciate their qualities and forgive their shortcomings if they’ll please forgive mine?

here’s more Decker celebrating the 60s at his 60th:

Decker at his 60th in a wig copy

Flat is Beautiful

The local newspaper, The Calgary Herald, today printed the last installment of a weeklong feature series on the trouble women have getting reconstructive breast surgery. Wow. Who knew the private matter of a woman who had, lost and now wants breasts again was up for public debate? The journalist’s thesis was ‘having cancer is bad enough, being disfigured is a constant reminder and psychologically painful. Your sense of identity is lost. It’s hard to function or feel normal when you’re self-conscious, demoralized and despairing. Mastectomies are a medical condition deserving of breast reconstruction.’ The journalist referred to it as Battle Scars.

Those interviewed for the counterargument said: ‘reconstruction, like cosmetic surgery and breast augmentation, is elective, costly and low priority. Breast reconstruction should get operating room time after surgical needs for physical trauma and pain. The medical system saved your life from killer breast cancer. Be grateful and be quiet.’ (One husband in the article was quoted calling anyone expressing this sentiment “insensitive” and worth being punched out.)

Is it really a public policy issue how I look or feel after my double mastectomy left me flat chested to the bone with a cover of skin? Cancer can change a person, visibly and invisibly.  People now guess I’m 10 years older than I looked two years ago. My two-and-a-half years older sister Andria was, on more than one occasion mistaken for my mother. My daughter was taken to be older or at least the same age as me before treatment. Not any more.

What’s invisible is the change in my attitude about how I look. I enjoyed my breasts, and my figure got attention. If I’m noticed now, say – in the locker room after a workout when I walk around with a towel at my waist like a man – it’s an opportunity to talk about breast health, the need for a positive lifestyle, and taking care of ourselves. My reality is to defy the beauty industry and what we’re sold as the feminine standard. I have scars from sternum to armpit from mastectomies, not from battles. This is my new shape. I don’t see myself, as one plastic surgeon in the article called women with mastectomies, as a “poor women going through this difficult time” but my heart goes out to the women who relate to that sentiment.

I wonder if our attitudes about our bodies before surgery are a reflection of our attitudes towards them after surgery? If so, then perhaps we should be looking (and this isn’t a stunning new insight) at how to support women gain confidence in their worth no matter what breasts they have or don’t have.  For example, do you remember Twiggy, the first skinny supermodel? She made flat girls trendy. Dressed in mod paisley polyester (aw crap, what was I thinking?) my breast buds and hipless shape were, to my immature brain, so cool that I was hot. Now I know I was delusional, but it was fun at the time. Being breastless now isn’t much different than it was then. Batty odd woman alert – I’m goin’ back to my Twiggy persona. MR900349135

I find the question: ‘How can we support women/people to accept the changes as well as those who grieve and mourn their loss?’ a more relevant and useful and interesting exploration than: ‘Why can’t women have reconstruction whenever they want it.’

Some women aren’t resilient, but research suggests most anyone can be. It’s another lesson from the conflict competence toolkit. Resilience is a teachable learnable skill and it’s never too late to learn it. Besides, resilience looks good on a girl without or with breasts, whether reconstructed or real.

Yes, I can handle the truth. I’m a conflict manager

horseshoe‘With luck’, the doctors said, ‘you’ll have (this) and not (that).’ I learned the ‘with luck’ was bait, a ruse to lure me into hopefulness. Sure I had breast cancer; lots of people do. My family doc got to tell me it was grade3/3 (most active) and in 9/10 biopsy samples (it was everywhere in my breast) and I was ER and PR negative. That means the cancer lacked the receptors that state-of-the-art cancer drugs hook on to. Bottom line, the drugs to keep me in remission don’t (yet) exist.

En route to the first mastectomy the conveyor belt had lots of pit stops. My favourite was on my tummy on a bed with a circle cut out of the mattress. The hydraulic lift hoisted the bed for the radiologist to work on the dangling breast. There’s no way to keep a straight face when an unseen man tickles your boob as it obeys the law of gravity. Then there’s the sentinel node and the staging and the genetics and the blood tests. I got my first cell phone to keep track.

Not only was the cancer grade 3 of 3 (should I be proud it’s a super-achiever?) but each grade has 3 ranks and it was at the top end of the third category, = 9/9. That’s known in medical jargon as “a bad actor.” Darn. I’ve taken acting lessons and had so hoped to be good at it.

I learned about researchers seeking breast tumors and donated the tissue formerly known as my left breast (now there’s an image – my breast in a petrie dish). It was satisfying to wake up from surgery thinking my breast had found a good home. “Yes”, said my daughter, Beth, “In the science freezer next to the peas and carrots.” Fingers crossed my rare tumor to play with helps them help other women.

Jeanie KanashiroJeanie Kanashiro, the wonderful surgeon, asked how she should tell me the pathology results. I said: ‘I’m tough, give it straight up.’ Whew, whenever the results could’ve been on a continuum of not so bad to awful, they were awful. Here’s what I recalled Jeanie said when I regained consciousness: “You’re stage 3, possibly stage 4. You’re Triple Negative so there’re no post-treatment drugs that’ll work for you. There wasn’t a clear margin to the chest wall, which means I couldn’t get it all. I felt nodes in your axilla (that’s an armpit) I think are cancer but it would leave you with a painful, nonfunctional arm. I opted to leave your tendons and nerves intact and trust the chemo and radiation will get what I left. In this case, the surgery was diagnostic, and the chemo and radiation will have to be curative.” I said, “Thanks; you made the right decision. Can I eat now?”

I could see everyone’s look when they talked about Triple Negative Breast Cancer (TNBC), but what was ER, PR, and HER2 negative? I’ve been such a positive person, how did I incubate such a contrarian cancer?

What I learned about TNBC nearly felled me. The four common words in the research articles were: “bad outcomes” and “poor prognosis”. TNBC is a recently identified, aggressive breast cancer subgroup, hard to treat, comes back often, kills fast. Well, fast is better than lingering. I delegated reading the literature to my partner Decker.

danielOncologist Dr. Danny Heng, set me at ease. He said, ‘The answer to most questions about TNBC is ‘I dunno’.’ Thereafter, I’d ask a question, he’d grin, shrug, and we’d say together, ‘I dunno.’ It worked better than false hope and bullshit. The answer to most questions in conflict management is “it depends” so I’m okay with ambiguity. Thanks Danny and nurse practitioner Cindy Railton, for your honesty.

Danny gave the ‘do nothing’ option, in which case I had between 4 and 9 months. Eliminate that. No one knew the best treatment so I went for dose dense, the most toxic and most treatment cycles on a guess backed with prayer and a phone conversation with Canada’s TNBC expert, Dr. Rebecca Dent. Thanks to my sister Andria, and Dr. Neil Bernstein for facilitating that connection. Decker and I had many conversations cuddled at night, struggling to decide. The cliché ‘as if your life depended on it’ hung over our heads. If it turns out dose dense wasn’t the right answer, well, my bad.

pills & needleTreatment ended; I asked about follow up. Danny said, ‘there no need.’ I was stunned. TNBC is a bad actor that adapts to chemo and lives on to recur. And Jeanie said she didn’t get it all. Isn’t the received wisdom to find it early? Danny explained, ‘Find a recurrence early or late; the outcome’s the same.’ It took a full minute to comprehend. How long would I want to know I’ll die soon?

I insisted on being followed anyway. The cancer was triple negative and I remain triple positive. After all, I got the sexy new variety, the cancer interest du jour, the tough subgroup everyone wants to conquer. If it recurs, someone somewhere will have something new. I just have to stay alive long enough to die of other causes.

In conflicts, everyone can agree on the facts and disagree over what those facts mean. In the process of managing conflict, we hear everyone’s Truth. The search for the truth about cancer can be like that. I might have had a diagnosis of TNBC, a bad actor, but the script of that play is still mine to write. I’m not searching for the Truth of the diagnosis or treatment; my theatre of life is about – as my hero Viktor Frankl taught me – the meaning of all this to me. There’s a workshop I’ve delivered on choosing your conflict attitude. Conflicts and problems are what happens in life;  reaction to the conflicts and problems are within our control. Cancer – all three kinds – chose me. I get to choose my attitude to it.

Breaking the news I had Triple Negative Breast Cancer

There were three reactions to my telling people I had cancer that I’ll share so you don’t ever, ever, ever offer them as useful to someone with a life threatened or game changing future.

First, I had to tell folks. My wonderful big sister Andria is a magnificent force of nature; my mentor and tormenter. As a voluptuous 15-year-old to my gawky, thin 12, she’d say: “What do you want, a medal or a breast to pin it on.” I reminded her of this and added: “I’ve finally got breasts, and they’re trying to kill me, so now I’ll take the medal instead.” Andria was on a plane to Calgary 2 days later. For the most part, I felt loved and supported.

Those nearby I could tell in person or with a phone call. Those farther away got an email, subject line was: All’s well except for the breast cancer. It got many great reactions, ranging from Steven Loble in London, England who wrote a simple, “AW SHIT!!” to encouragement, and offers of – mostly contradictory – advice.

Then there were the unhelpful reactions. First among these was to negate my feelings, the importance of not feeling the way I was feeling at the time, or to feel more of, or different than, or some attitude that was going to save me because they were saved that way, or heard about someone who was, or read it somewhere.

So, here’s the thing to know: how I felt at the time was how I felt at the time. It wasn’t wrong, or bad, or going to affect my life span. It was just part of the process I experienced at that moment. It would change soon – guaranteed – depending on where I was in the chemo cycle and chemo-induced acute pain syndrome and the mood alterations from the drugs, their side effects and the latest news from the lab. Hang on tight friends, treatment’s a wild emotional ride. Rather than be slave to what I call the twin tyrannies of positive thinking and good attitude, I change the subject.

The second reaction to edit out is related to the first. ‘I know just how you’re feeling because …’ and followed with ‘because I have a paper cut that really hurts,’ or ‘because my neighbour’s wife just died of breast cancer.’ Thanks for sharing, but if it’s okay with you, save your troubles until I feel better. I’m happy to listen when I have energy to spare.

The third reaction is possibly dumbest, just because it’s so common: “Well, I could be hit by a bus tomorrow.” As an aspiring writer, I’m appalled a cliché is intended to be helpful. Pleeze, think of a fresher metaphor for the fragility of life and that everyone is a diagnosis away from potential disaster. The first few hundred times, my response was polite acknowledgement they were trying to say something – anything – to show they understood what I faced.

The next hundred or so times I didn’t hold back. No, the risk of being hit by a bus isn’t the same thing, and to say it is shows no frickin’ clue about triple negative breast cancer that really likes to be deadly. I can manage the risk of stepping off a curb. I can look both ways for the damn bus. I can cross at an intersection on a green light. If the bus comes out of thin air I can jump back to the curb. I can do Risk Management for a bus. I had no cancer risk factors, pre-dispositional, genetic, or lifestyle and I got breast cancer anyway. No amount of risk management could stop it coming at me from thin air and there was no curb to jump back on. There’s no green light or crosswalk option for me now, or get out of jail or free pass for my breasts going crazy on my chest and spreading the insanity into my lymph system. So, unless you plan to throw yourself off the curb under the bus, it isn’t the same.

My friend, Rose Boll, author of an award nominated young adult novel called The Second Trial, reminded me that it isn’t useful to write what not to say and sign off. Of course, duh, slap forehead with hand, I know that; I practice Appreciative Inquiry, and the reframe of the negative to the positive and etc, etc, etc. Thanks Rose, for reminding me to use in writing about Living Breastlessly what I know from Conflict Competency, which is the point of this blog. So, here’s a suggestion on something potentially helpful to say. At the Tapestry Retreat, March, 2012, there was a session on important conversations, including a chance for each person to say:

thank you

please forgive me

i forgive you, and

goodbye

I guess you modify it for each situation and it’s helpful to do empathetic listening, which is nonjudgmental acceptance of what the speaker says.

Risk management is like conflict management and crisis management: genetic triplets in many ways, and distinguishable in when to apply each. Like cancer they operate on a time series. I manage risk proactively to prevent problems from arising in the first place, deal with conflict if it presents, and apply the right strategies should the situation turn into a crisis.