In Part Two of her interview about cancer, Canadian blogger, bi-linguist and teacher Michelle Payette-Dauost talks about the restrictions of her treatment and how she has learned to handle her fears of death. Michelle also writes about love and the personal connections that have built up through speaking openly about her condition.
Leslie: Looking back, what have been the high points and low points of your treatment regime?
Michelle: Because I signed on to a two-year clinical trial, I am locked into a very specific, tightly controlled regimen, which is mostly good, because I get extraordinary care—state-of-the-art treatment, really—and my very own dedicated research nurse (in French ‘infirmière de recherche’), Chantal, who handles virtually every aspect of my treatment, bookings, extra medical appointments related to the side effects that come with extended treatment, and who also has become a wonderful friend.
BUT (and this is a big but), I am trapped in a two-week cycle. In daily life terms, it means that every second week, I travel to CHUM, the Université de Montréal Hospital Centre (by car, then I hop the train and metro that take me right inside the hospital, a 90 minute commute), on Monday or Tuesday (depending on my oncologist’s availability) and get my pre-chemo bloodwork done, get weighed and have my vital signs checked by Chantal, fill out a questionnaire that Chantal reads over with me, and see my oncologist. Then, on Wednesday, I go for chemotherapy, travelling the same way. Because I also receive immunotherapy drugs, I’m usually at the hospital about 7 hours (there’s a lot of waiting involved). It’s a long day. I’m sent home with an infuser filled with a specific chemotherapy drug that will continue to enter my body for about 46 more hours. On Friday, I must go to a local clinic to have it unhooked by a nurse.
For the next several days, I try to recover. Every eight weeks, on the second week of the cycle, I head into the CHUM for a CT-Scan. That second week can also be when I see other specialists (such as an ophthalmologist) to deal with some of the more debilitating side effects of one of the drugs.
I have been doing this for 17 months. It is a very small time/space to live in, and it makes it hard to live outside of my cancer; to experience anything CLOSE to the life I left behind.
One Monday in late November 2019, I walked into the CHUM and immediately, shockingly, started to cry. It was like hitting a wall. I sniffled in the elevator; I cried while in the waiting area on the 14th floor; I blubbered speaking with Chantal while she weighed me; I blubbered some more when I saw the oncologist. My filters had abandoned me completely. A few weeks after that, in early December, I caught the norovirus (gastroenteritis), was sick as a dog, and then had an even worse relapse ten days later (the result of being immune-suppressed by treatment). I had finally hit my nadir. My (so far) rock bottom.
I just had to live outside of my two-week prison… just a little while. I asked for three full weeks off, and thanks to the norovirus, I got four (my blood tests revealed issues with my electrolytes). As I write, I’m in my 4th week of ‘vacation’. By next week, it will have all started up again. I should reach the end of this clinical trial in September 2020.
High point? Realizing how fortunate I am to have been able to receive immunotherapy drugs in addition to the standard chemo protocol.
Leslie: Can you describe the process of coming to terms with the deep-seated fears associated with cancer? What strategies have you developed?
Michelle: There’s a lovely verb in French, ‘apprivoiser’, that has no exact equivalent in English. If you look it up, you’ll get approximations like ‘to tame’. But apprivoiser suggests a process that is much more incremental and gentler. It’s a kind of mix of to acclimate, to adapt to and to befriend. And so, I would say that since July 2018, I have apprivoisé my fear of cancer and of dying.
My father died of lung cancer at the age of 62, in 1989. His illness was harrowing (and it seemed so young to die at the time). The treatment of cancer then was not what it has become. My mother, who is 84 years old, survived an aggressive form of breast cancer diagnosed when she was 77, and has lived happily since then. Most of us, if we live long enough, witness these scenarios multiple times. My son Simon tells me that in 2020, 40% of people living in developed countries will be diagnosed with cancer in their lifetime.
So there is that. Cancer’s ubiquity. We must all die, and we must all die of something. I don’t think my mum will die of cancer, but the prolonged lives we now live—well into our late ‘80’s and beyond—are not without a large share of suffering. And still, we die.
When I was in my late fifties, I saw my future the way most people my age do. It was based on the assumption that I had a decent chunk of time, say… 20 years, to live, to grow old gracefully, see my grandchildren reach adulthood, perhaps travel a little, and enjoy living in the multigenerational home Simon was adamant about investing in. After all, my own mother has seen her eldest great-grandchildren reach the ages of 5 and 7. It was a horizon with fuzzy borders.
And then I learned of my cancer—two weeks before my 60th birthday. At first, all I could see was the loss. I wouldn’t have the time with my family and friends that I had counted on. My mother would outlive me and that would just wreck her. I had hoped to perhaps know romantic love again, but this time, with fewer expectations to weigh it down. But specifically, I wouldn’t see my grandchildren grow up; I wouldn’t be able to keep loving and helping my sons and their families. If my son Christian and his beloved Vickie have children, it seems that they will grow up without a grandmother, because Vickie’s mother died of cancer 7 months ago, at the age of 54 [it has been a very difficult year], and I could be gone in 12 months. Who knows?
Thoughts like these are extremely painful. They can make you sob for hours.
And then you begin treatment, and you realize that you do not want to live at any price. With enough weariness and fatigue and pain, you begin to understand how it becomes easier to relinquish your grasp on life. And you also begin to see that you only ever have now. And that everything else is… hopeful tale-spinning.
Once you acclimate to the sense of an ending, once you befriend the thought that you will die and return to the soil, the air, the universe, your fear of death fades. That leaves you the fear of pain and suffering. To deal with that, you look at what you have suffered so far; you turn your gaze to palliative care and assisted death, and you place your trust in the effectiveness of these, in the past experiences of people you are close to, and in the judgement of your loved ones and your medical team.
What remains is the pain of impending separation from the people you love. I’ve found this the hardest thing to live with. It is thus left to me to make that separation as graceful and peaceful for my loved ones as possible.
Addendum: A few nights ago, I realized that I have not been entirely forthcoming about fear. What you don’t know is that, in fact, my body has responded favourably to the treatments I’m undergoing. My very first CT-Scan indicated shrinkage of my tumours at every site, of 35-40%. This is not uncommon. But what often happens later on is that the tumours rebound, and sometimes spread even more aggressively. What’s different in my case, and what is of great interest to my team of oncologists and to the sponsor of the clinical trial, is that even though it is just a tiny bit each time, my tumours, for the past 16 months, have kept shrinking minimally, but constantly. The few tumours in my liver are now measured in millimeters, not centimeters. Even during periods when I was not receiving chemo (because of severe side effects), but only the immune drug, this pattern continued.
I have been told that this type of reaction in the body could be adding years to my life. That little kernel of hope, of maybe living a bit longer… it does make me greedy, and there IS fear, especially because I recently had the two rounds of gastro… It scares me and I think that maybe I’m depleted, maybe while I’m still building my strength, the cancer is becoming active and spreading, and so, I suppose, there is always fear. But there is also that other response in me, to incrementally and gently become better prepared for the day when the CT-Scan reveals that my tumours have started growing again, and that my living is now becoming my dying.
Leslie: What has been the spiritual experience of having cancer?
Michelle: There is so much more stillness. I have a more contemplative life now. Time alone in this house. Time to think, to meditate. Time to read and to write. To be alone with my thoughts. To look out at the trees, the sky, the creatures and the changing seasons and absorb the beauty and the grandeur of these. Time to think about my whole life with my husband— to reconcile myself to our separation and its impact; to let go of all of my smallness. Time to learn from the kindness others.
I’m able to stop and to feel the love that is beamed at me day in, day out, especially via the internet, from a network of caring, kind friends and family, maintaining contact with me through thick and thin. I have time to nurture relationships with people I barely knew and now consider intimate friends—connections that have grown out of my online presence. I have time to appreciate and feel thankful for the calls, prayers and thoughts of the people I love and who constantly return that love.
I have time to close my eyes and send out pulses of love and GRATITUDE far and wide. Gratitude has become the overwhelming emotion in my life. I feel a sense of connection with others like I have never experienced before.
Before I die, I want to have found a way to inhabit magnanimity as fully as is possible.
Leslie: Given the debilitating effects of cancer and its treatment, how have you managed to find the strength to write about this topic?
Michelle: I decided the day I received my diagnosis that I would not hide from the world or waste one iota of energy trying to keep what was happening secret. I would ‘come out’, and draw from the support and experience of others.
Simon immediately saw that, in addition to the real possibility of extending my life, my participation in a clinical trial made possible the sharing of my data, to the cumulative benefit of science and the eventual benefit of potentially hundreds of thousands of people.
I feel that writing has saved me, because it has allowed me to step back, step away from this terrible, difficult new reality that I was just stewing in and to look at it more objectively, with a little bit less emotion, and with thoughtfulness.
And then I thought that if I was able to share this, just put it out there not knowing who on earth would read any of it, but that maybe someone, somewhere would actually get something from it—I thought if only that, it would be worth the effort, hoping perhaps, too, that someone would respond to it.
And the other side of it was that I was so trapped in the house, in this two week cycle that I’ve been living in, that I needed to reach out—it felt like reaching out to the world—not just to my Facebook list of friends.
But it was a shot in the dark, it was a flare sent up into a night sky, and what happened is that a little personal blog that had had about 4300 visits in 4 years—which was perfectly fine, I had never promoted it—reached over 25 000 visits in the 16 months that I’ve been writing THIS IS THE MOMENT.
I find that extraordinary. And the quality of the responses; the kindness of people; the passion in their voices (their written voices); their benevolence; their willingness to share their experiences…Sometimes, their responses are personal in the sense that they, themselves, have survived cancer, but often, they write about people they love. And there have been others who wrote: I’ve never had cancer, I have no one close who has cancer but your blog, this post, really touched me or reached me in some way.
Suddenly, there was this very human experience and connection and it changed everything for me. So, I write to an invisible crowd of people who for some reason or other just come to the blog and want to read it.
Some of them have become close friends. I have a very close friend who was born in New Zealand and grew up there and who lives in Sweden. I’ve never seen her other than in pictures that we’ve shared and yet we’ve become so close. And there are other stories a little like this, which have made my world big. It made the walls of my home invisible, in a sense, and I can see out, beyond the tiny circle that my life was trapped in. It has meant everything to me and it still does, and I respond to every single comment. I always will, as long as I’m able to.
Leslie: What’s your prognosis and how would you define your condition now?
Michelle: My cancer is deemed incurable. Its treatment, technically, is ‘palliative’, though that adjective now carries almost exclusively an association with end-of-life care—of imminent death. But of course arthritis, multiple sclerosis and most inflammatory diseases are also incurable. A better word, one that is useful in boosting morale while being accurate, is chronic. My cancer will not be eradicated, it will be treated as a chronic disease until I die from it or from something else.
When you live a life that is that constricted by treatment, the question that resurfaces constantly is: Is this living or dying? You don’t really know. I could be gone within a year, I suppose (though that is unlikely), or my life could continue on for years.
“Think of yourself as dead. You have lived your life. Now, take what’s left and live it properly.”
– Marcus Aurelius
WHEN I RISE UP
When I rise up above the earth,
And look down on the things that fetter me,
I beat my wings upon the air,
Or tranquil lie,
Surge after surge of potent strength
Like incense comes to me
When I rise up above the earth
And look down upon the things that fetter me.
A poem by Georgia Douglas Johnson (published 1922)
Next week I’ll post a short story/lyrical essay about a ‘summerslam’ contest at Questors Theatre. It’s written by me, Leslie Tate!
ABOUT MY BOOKS:
- Heaven’s Rage is a memoir that explores addiction, cross-dressing, bullying and the hidden sides of families, discovering at their core the transformative power of words to rewire the brain and reconnect with life. “A Robin Red breast in a Cage / Puts all Heaven in a Rage” – William Blake. You can read more about/buy Heaven’s Rage here.
- Purple is a coming-of-age novel, a portrait of modern love and a family saga. Set in the North of England, it follows the story of shy ingénue Matthew Lavender living through the wildness of the 60s and his grandmother Mary, born into a traditional working-class family. You can read more about/buy Purple here.
- Blue tells the story of Richard and Vanessa Lavender, who join a 90s feminist collective sharing childcare, political activism and open relationships. You can read more about/buy Blue here.
- Violet is about late-life love. It begins in 2003 with Beth Jarvis and James Lavender on a blind date in a London restaurant. Attracted by James’s openness, Beth feels an immediate, deep connection between his honesty and her own romantic faith. From then on they bond, exchanging love-texts, exploring sea walks and gardens and sharing their past lives with flashbacks to Beth’s rural childhood and her marriage to a dark, charismatic minister… Signed copies of Violet can be bought here.
- The Dream Speaks Back, written by Sue Hampton, Cy Henty and Leslie Tate, is a joint autobiography exploring imagination and the adult search for the inner child. The book looks at gender difference, growing up in unusual families and mental health issues. It’s also a very funny portrait of working in the arts, full of crazy characters, their ups and downs, and their stories. You can buy a signed copy of The Dream Speaks Back here.