from today's Globe and Mail
Cancer changed me, but I’m still the same person
Here I am again. Caught in the web of cancer. This time around it is harder to turn away, to forget that I am marked by, measured by, these unruly cells – these cells that rebel from the ordinary cycle of life and death. In my case, my t-cells (a type of white blood cell) have gone wild; they are refuseniks, resisting death and instead are multiplying. Are they mistaken, confused?
To live with cancer is both visible and invisible; the cancer hospital has become familiar; I know the best bathroom and where to find filtered water. Blood is gathered and measurements are taken, sizing up my blood pressure, temperature, oxygen levels, white and red blood cells. What remains invisible and unmeasured is the air we breathe, the water we drink, the poisons in our communities. Where do they appear in my diagnosis, in any diagnosis?
And I ask myself, does the world really need another cancer story? Why do I feel drawn to put words on a page to make sense of something that is difficult to comprehend. How can I even write about cancer and me in the same sentence? All I can write is fragments, because the whole is not in focus yet and maybe never will be.
These are the things I do know: My rare t-cell lymphoma, (is it really mine?) was diagnosed in 2018 at stage 3. The blood clot in my right leg was the telltale sign in addition to my exhaustion, night sweats and fevers. Lymphoma is a systemic illness, meaning it has the capacity to travel through the body, through the blood. It is systemic like all of the terrors and suffering of our society; wealth inequalities, white supremacy, misogyny and the climate crisis. Conventional medicine has little understanding of why my t-cells rebel, mutate and grow uncontrollably. Lymphoma is almost always treated with chemotherapy, stem cell transplant and newer treatments using genetically engineered t-cells to stimulate the immune system.
Almost four years and three treatments later, I shout hooray for the medical care I have received along with the tremendous and sustaining support of family and community. I have made a lie of my earlier best-before-date. And yet I do not know if my recent infusion of genetically engineered t-cells will bounce those misbehaving cells out of my body. That has me bound up in uncertainty. A level of uncertainty that I know much of the world deals with daily: “Will I have enough to feed my family?” “Will my children survive and grow?” “Will I escape violence or survive it?” I have the privilege not to deal with those struggles. And yet I am facing an illness and treatments that disrupt my body and will surely shorten my life.
My recent 10 days in hospital under the watchful eye of nurses are punctuated by measurements of my vital signs and my neurological function. On the first day, I am surrounded by a team of nurses, one of whom administers my t-cell infusion. Through my veins travels the donor t-cells that have been genetically engineered to track down my wild and cancerous t-cells and act as bouncer t-cells, escorting them to the exit door.
At 6 a.m. every morning, after I’m measured, my nurse asks me to hand write a sentence: “I want to live in a better world.” This is the sentence I pull out of my head a few days before going into the hospital. This is what I write 30 times while in hospital and continue to write for days after. My crisp and clear letters remain consistent, an indicator that I have dodged neurological toxicity, one of the most common side effects of this treatment.
All the nurses that ask me to write that sentence seem to agree, but they never have the time to express what that better world looks like, to converse with me about our imagined worlds.
Can I be thankful for my medical care, for my oncologist, the many nurses, all of whom seem to have my best interests at heart and treat me like a human being on a difficult road? Can I have gratitude for Big Pharma, whose drugs have prolonged my life, while their profits soar? Can I appreciate this when I also rub up against the limitations of this medical system that individualizes and privatizes my illness and my body? When I write about the treatment and care I have received I feel that I must be clear that I am not a propagandist for a cancer industry which has been created to fix the symptoms of a diseased and inflamed society.
And yet, I am grateful to live in a world so full of beauty and joy, while recognizing how much suffering and contempt is at the core of patriarchal racist capitalism. My days are punctuated by vivid moments of reverie at the softness of my lover’s lips, the grandeur of the tall oaks in our neighbourhood and the taste of salty anchovies and pungent capers in my potato salad. I am awake to the devastation in the world at the same time as I take inspiration from the struggles for sovereignty, freedom and liberation.
Every diagnosis tells a story. Lymphoma is an astonishing perversion; a disease of overproduction, of unstoppable growth. How ironic, that an expansionist disease has set up colonies in my lymph nodes. How did this happen to my body?
I live in a world that made me sick. My body lives inside of history and on stolen land. It has within it histories of migration and surveillance, of dissent and protest. My body knows love and sex and being in the street. My body knows fatigue and sitting still and breathing. It knows laughter, hot sauce and Nina Simone.
Life becomes vibrant and stunning and sharp, many moments lived at the edge. While death is not imminent, I cannot pretend it is far into the future. Every beautiful autumn leaf and every new ache, is noticed and recorded. Alongside this, daily life is filled with moments of feeling fragile and unsure.
I am learning to love my body, to truly and deeply love its capacity for healing. Must I also embrace the lymphoma, those rebellious cells? They are me and they are not me. Cancer has changed me forever as it has brought my encounter with death into sharp view. But I have found that I am still me, with all my imperfections and beauty and I bring all of that to the challenge of living fully. I am surprised at being loved so tenderly and so fully. And while no one gets instructions for how to live, I seem to have created a map of ongoingness, one day at a time.
Amy Gottlieb lives in Toronto.
@Jackwb Beautifully stated. Thanks for sharing it. Echos of my own journey and feelings - I get exhausted by all the things I must monitor to help myself get better (with alternatives to chemicals) yet slacking off is not an option if I want more time here with my loved ones. I believe this in spite of medical skepticism - that what I do/don't do makes a difference. Life has come to this - one more day/week/month - possibly year - so that I can see my grandchildren grow up enough to remember their funny, always laughing nonna. I so looked forward to this stage of my life - and cancer threatens to rob me of it all. They are so young. I am not old. So I fight back. No matter how tired and fatigued I get by all the reading/research/side-effects/trying things. I love life and I'm gutted that this should happen to someone who truly loves life, has always loved life, with a capital ‘L’. I'm so tired of medical professionals telling me ‘NO’. No, you don't qualify for that drug or this treatment, no that won't help you, no you probably won't live for years, just months. I fight and fight and fight because I cannot bring myself to believe that they are right. I feel in the depths of my soul that I will win this battle (years, not just months). I must win because there is so much I still need/want to do with my life. I want to spend the rest of my life helping other cancer patients win their battles too. So much still needs to be done/learned/discovered. One day at a time and also forever, however long that may be. In a moment of every day, I find something to feel happy about, grateful for, to laugh at. That has to be enough for now. Just to survive.
@Jackwb, A good read. It echos what I believe, “ Cancer will not define who I am”. Some people may call it denial, but for whatever time I am on this Earth, I want to live every day to the fullest, doing the things that I love to do and giving meaning to my life. A LIFE WELL LIVED IS WORTH LIVING.