Trash Panda Literary Magazine

Mom goes into hospital to have a biopsy on a lump in her breast. She emerges a few days later with a radical mastectomy. The surgery revealed metastatic cancer that had spread to her lymph nodes. The disease is too far advanced to be removed completely, but radiation and chemotherapy may slow or even stop its progression. The doctors give her a 50% chance of surviving five years. It is 1973. Mom is forty years old; I am thirteen.

She starts radiation treatments and develops angry-looking burns around the terrifying scar from the surgery. After several rounds, she begins chemotherapy. It’s brutal. Monthly infusions make her very sick for three weeks, followed by a short recovery and a few good days, before the cycle begins again. She becomes painfully thin and loses her hair. She is unable to tolerate things she once loved: a morning coffee, a well-prepared meal, an evening scotch. She continues to smoke, though, as she has all her adult life.

“It’s my last remaining pleasure,” she tells me.

After a few years, it’s clear that the treatments aren’t working. The cancer spreads. Now she has tumours in her bowel that make it difficult to ingest anything except protein drinks. She stops chemotherapy, choosing quality of life over this terrible medication regimen.

For a year or so, she looks and feels better. Her hair grows back, thick and curly where it used to be straight. She gains weight. She goes on road trips with girlfriends, taking smiling photos on beaches with her dog. She takes a cruise to Australia and back. But it’s just a respite. The cancer is still there, growing. Now it’s in her spine, maybe spreading to her brain.

Mom’s sickness runs like an indelible cord through my teen years. I wish I could unravel it and throw it away, but that’s impossible. I visit her often, though I’m sure not as often as she’d like. Every Christmas, my brothers and I stay with her, fearful this might be the last one. She is in and out of hospital frequently. Each time, the doctors warn that this could be the last time, but somehow, she struggles her way back home. She’s doing this because she wants to see us grow up, I know. It’s so painful and heartbreaking, and I don’t want to face it, though there’s no looking away.

The last time I see her, I am twenty and she is forty-seven. It is 1980. I am going to another city to work for the summer, before returning to college. Mom volunteers to drive me. It’s a full day round trip that includes a two-hour ferry ride each way. She is very weak, and she stays in the car on the ferry, too exhausted to make the trek up to the deck. 

In less than a month, she is dead.

I feel grief, yet relief that she is finally free. No more pain and suffering. I feel a rush of tenderness and love for her that I haven’t allowed myself to feel in years. I call my grandmother to tell her that the youngest of her six children is the first to die. She starts crying before I have a chance to give her the news; she knows what I’m going to say. We’ve all been waiting for this.

The cord does not dissolve with her terrible, too-early death. It twists itself deeper into my guts. 

I believe that I, too, will die young from breast cancer. 

I reflect on her life and how I want live mine.

I think about the pain and anger she carried for years after Dad left her for another woman. That bitter knot festered inside, slowly poisoning her body. I was terribly hurt by the divorce, too. I resolve never to marry. I don’t trust a man to stay with me. I won’t have children. I don’t want them to feel the pain of divorce or suffer when I get breast cancer and die.

I marvel at how she seized life. She had never travelled outside of Canada so, a few years after the divorce, she moved to Accra, Ghana as a volunteer for two years, my younger brother and me in tow. An attractive single woman in her late thirties, she took lovers in Ghana from all over the globe. Less than a year after returning, she received that devastating diagnosis, so it’s especially poignant to realize how brave and intrepid she was, while she still had time. 

Mom wanted to go to university and study political science, but she put that aside to raise her family. She was proud to feed and clothe our family of five well on Dad’s meagre salary. After the divorce, she worked as a secretary.

I pursue university degrees. I don’t want to be a smart woman reduced to an unchallenging job due to lack of education. I embark on adventures, travelling through Asia alone, teaching English when I need money, spending several years in Thailand. Mom had hoped to be posted in Asia, I know, though she ended up in West Africa.

I have lots of lovers, some fleeting, some longer lasting. Either they leave me, or I leave them first. Usually the latter; it’s safer that way.

I plan for a good death. I mistrust western medicine and its toxic medications. I won’t try to prolong my life with drastic interventions. A few extra months or years is not worth the suffering. I detest the idiom of warriors losing their battle with a disease. No one wins against death. Far better to accept death gracefully when it comes.

I settle in Toronto and enter the first truly mature relationship of my life. In 2000 I turn forty, the age at which Mom received her diagnosis, with no sign of the breast cancer I have feared my entire adult life. It is hugely emotional for me to live through my forty-seventh year, the age she was when she died. 

Still the cord runs through me, digging deeper. Something is wrong with me.

I develop painful heartburn. After a scope, the gastroenterologist says she sees no apparent cause. She tells me flatly that even with lifestyle changes, I need to take medication to suppress the acid in my stomach. Without it, I risk permanent damage to my esophagus that can lead to cancer. Frightened, I comply.

One day, my fingers turn white in the cold. They look dead, like they belong to a wax figurine. This reoccurs periodically, usually, but not always, when temperatures are low.

I begin to feel like I can’t breathe deeply. I’m as active as ever, but I feel a subtle loss of ability to draw a full breath. It’s perplexing. 

At forty-six I develop a systemic yeast infection, and embark on a strict no-sugar, no-fermented-food diet. I lose twenty pounds in a very short time, which I attribute to the diet. After a month, the infection is cured, and I return to my normal diet, but the weight does not return. I’m not concerned: I find my new thin physique attractive. Such is the power of media-boosted body image. 

I develop sore, swollen joints on the fingers of my right hand. I see my family doctor, who says it’s normal wear and tear, a natural part of aging. Then I get a symmetrical pattern of pain and swelling on the fingers of my left hand, so I go back.

I spend a long time with a family medicine resident. She looks at my fingernails and examines my skin. She quizzes me about everything, making note of the acid reflux, finger discolouration, breathing changes, weight loss. Finally, she goes to report to the doctor.

I wait in the cold examining room for a long time before my doctor and the resident come in.

“Nancy, my colleague has taken a very thorough history. I think there may be something going on. I’m going to refer you to a rheumatologist for a consultation.”

I don’t even know what a rheumatologist does, but I go. I am subject to a bewildering variety of tests and scans, and the rheumatologist eventually tells me that I have two autoimmune conditions, rheumatoid arthritis and scleroderma, as well as lung involvement. She refers me to a respirologist to evaluate my lungs. In the meantime, there are drugs I can take that will help with the rheumatoid arthritis, at least; there are no treatments for scleroderma. 

I’m terrified. I don’t know what any of this means. I’ve never heard of these conditions and have no idea how they might affect my life. I don’t want to take any drugs, frightened of what they may do to me. I say I will pursue natural treatments, as I have for many years, and ask for a referral for a second opinion, which she gives.

The respirologist orders more tests and tells me I have pulmonary fibrosis, scarring in my lungs, caused by one or both of my autoimmune conditions. He monitors me frequently.  Luckily my condition remains relatively stable, but if I start to decline, he says, he will refer me to the lung transplant program. I shut down at these words. This is the kind of invasive intervention I’ve vowed to avoid, and I resolve that if it should come to that, I’ll refuse.

My new rheumatologist is thorough and kind, spending half an hour at each appointment to assess me, explain what’s happening, and answer all my questions. She, too, recommends I start medications to treat rheumatoid arthritis. I tell her that I want to work with the naturopath I’ve been seeing for several years.

“I can’t make you take these medications, of course. I can only recommend a course of action that is proven by scientific evidence to have good outcomes. I have seen improvements in many patients who have taken these drugs.”

Still, I refuse. 

My naturopath doesn’t believe I have rheumatoid arthritis. He thinks it’s a circulation problem. He continues with homeopathy, acupuncture and dream analysis. He thinks I’m on the verge of a breakthrough, maybe a miraculous cure.

I don’t feel on the verge of anything except collapse. All I experience is decline. Now I have joint pain throughout my body so severe that I can’t sleep more than half an hour without waking up, groaning, to change position. I continue working, but I’m constantly fatigued, and have to rest as soon as I get home before I can even think about making dinner. I become very frail. One day, I catch myself shuffling like an old woman.

I stop seeing the naturopath and start taking the medication my rheumatologist recommends. I can’t go on like this. I’m only forty-seven, and I can’t live with this debilitating chronic pain. It is 2007.

I never make the connection between my age and my mother’s. What I have is very bad, sure, but it’s not the dreaded c-word. This won’t kill me like cancer does. Will it?

I start a medication that takes three months to show improvement. There is none, so I begin a different one, which takes a similar amount of time; again, no change. Then I move to a newer drug and feel better almost immediately. It’s incredible to be pain-free, walk easily, feel energetic again. Western medicine, which I have been so afraid of for so long, has given me my life back.

Everything is good for several years. My rheumatoid arthritis goes into remission, and I can cut one drug out of my now extensive medication regimen. 

In my late fifties, I begin to decline, getting weaker and shorter of breath. My respirologist wants me to start supplemental oxygen, but each time he brings it up, I refuse. In my mind, it’s a step down the road to my greatest fear, lung transplant. In 2020, a week or so after my sixtieth birthday, he finally puts his foot down. I will be getting supplemental oxygen from a machine at home and tanks when I’m out.

The next day, a respiratory therapist comes to my home to set up the equipment.  He notices that my heart rate is very high, and recommends I see my family doctor. My doctor tells me to go to emergency immediately. I try to resist, but she insists. I am diagnosed with pulmonary embolisms, blood clots on my lungs, and sent home on blood thinners. I take sick leave from work for several months and eventually qualify for long term disability. The insurance company deems me totally disabled, which shocks me. Am I really that sick?

The blood clots dissolve, but I do not improve. I’m referred to a specialty clinic. At my first consultation, the doctor says my condition is dire, and I need to be admitted immediately. I’ve finally learned my lesson and agree. I spend two weeks in hospital and am diagnosed with pulmonary hypertension. I’m discharged, weak and frail and on two new medications. Follow-up shows my condition has hardly improved, so they add another drug, but it’s not much better. Four months after I first see him, the specialist says the words I never wanted to hear.

“I want to refer you to the lung transplant team.”

I have been stoic through this journey, but at home, alone with my partner, I sob inconsolably. 

“I never wanted it to come to this. I’m so scared.”

Then I gather my resolve, and we attend a meeting with a transplant team doctor. He speaks for an hour about the transplant journey. His spiel is so thorough and measured that by the end I decide to try for it. I know this is a high-risk surgery, but Toronto is a world leader in lung transplantation with an enviable track record. They won’t offer me a transplant unless they believe the benefits outweigh the risks and that, without it, I will not survive long. I’m not ready to die; I want to live.

I must undergo assessment to find out if I’m even eligible for the surgery. This normally takes a few weeks of testing, but COVID has hit, and hospitals are reeling. The transplant program is shut down for a few months as resources are diverted to deal with the pandemic. Finally, the testing begins—a series of isolated appointments spread over several months. I attend masked and afraid. This virus could be catastrophic for me. 

In the meantime, I focus what I can control—exercise, diet, and attitude. I’ve learned that it’s best to be as strong and healthy as possible before a transplant. I begin to walk four minutes on the spot in my home, with a goal to add a minute each day. It’s difficult, and I often split it into segments, but eventually I can complete a thirty-minute walk every day. Occasionally, when the weather is perfect, I walk outside with my oxygen tank. I can make it around the block if I go slowly and take several stops to rest and catch my breath. I add stretching and light weights to my workouts. All my energy goes to this; I can no longer manage any household chores. 

In October 2020, when I am 60, I am officially listed for lung transplant. 

I approach the prospect with clear-eyed optimism. I hope and believe that I’ll get a transplant and survive, but I know that may not happen. People die waiting for, or soon after, the surgery. Relatively few never make it home from hospital. Others live one or several years; an inspiring handful are still alive decades after their transplants.

I’m not afraid to die. I’ve lived a full life, and there isn’t much on my bucket list. I’ve travelled extensively, pursued an education, worked in interesting and meaningful jobs, and found a loving life partner. Even though I’m barely surviving now, I find joy every day, in the sound of a bird in my yard, the sight of a flower in my garden, the purr of my cats, the taste of a favourite food. I am at peace.

On July 6, 2022, after waiting twenty-two months, I receive new lungs. I am 62 years old. The recovery is much harder than I had anticipated. I spend thirty-eight days in hospital recuperating from the surgery, and twenty-five in the rehabilitation facility across the street, building strength and stamina. Finally, I’m discharged to continue recovering at home. 

Today, at 63, I feel better than I have in years.

The cord is thick now, but it runs smoothly through my life, binding my mother to me. I no longer wish to unravel it or throw it away. Watching her, I learned valuable lessons about living and dying. Unlike her, I was lucky enough to have a lifesaving option, and I grabbed it. Every day, I am filled with gratitude to my donor and my medical team for giving me this sweet second chance at life.  I am so happy to be alive, thankful for each day, not worrying how many more there may be. If this is all there is, it’s enough.