M Y   C A N C E R    J O U R N E Y

At the age of 35, I became gravely ill. I’d assumed that my shortness of breath was the result of my escalating  weight gain and had been ignoring a number of symptoms for at least five months. My health deteriorated until my partner realized that I could only climb one stair at a time without stopping to catch my breath. Scared and furious, he’d reached the outer limit of his patience. We negotiated a three-day countdown to get me medical help. At the designated hour, he quietly bundled me up and drove straight to the er. My cancer diagnosis came 36 hours later.

D I A G N O S I S  I had two partially collapsed lungs and a malignant lymph node in my neck, as well as tumors along my sternum and in my abdomen. The final diagnosis of discordant stage IV non-Hodgkin’s lymphoma indicated that the cancer was also present in my blood. It took a few days before I could assimilate what the doctor and my family were trying to tell me about my situation.

T R E A T M E N T  That year my cancer cycled through chemotherapy treatment, remission and recurrence. It was a long journey. Unlike some of the patients around me who had little energy left to fight, overcoming cancer became my full-time focus. In addition to the medical care I was receiving, I changed my diet, designed and practiced a daily regimen of body scans, visualizations and prayer, and attended several Qi Gong sessions with Grand Master Peng. Despite these interventions, one day I stopped responding to the available chemotherapy.

The medical team recommended a bone marrow transplant as my final treatment option. As I had no familial match, I was encouraged to join the wait-list immediately for an unrelated donor. Even with that, there was no guarantee that the registry would find a match; that if it did, I would survive the procedure; or that the bone marrow transplant would ultimately prove successful. More certain was the prognosis. Without the transplant, my life expectancy was estimated at two to five months. The oncologist suggested a window of 72 hours to make my decision.

I didn’t make it alone. There were six people who cared deeply about what happened to me next. I understood this more profoundly when I invited each of them to attend what I morbidly referred to as “my last supper.” This was in fact a luncheon I had arranged for us in Vancouver’s Stanley Park. Already an awkward social situation due to the complexity of relationships within the group, it became more uncomfortable still when I asked each person to share their thoughts about the proposed transplant and what might prove to be my end-of-life care. My request was visibly devastating for each of them—there was no comfort to be found in whatever vote they might cast. It was a sobering exchange but the courage of these people gave me strength me to articulate my own feelings. 

After everyone had spoken, I shared my thoughts about what I felt might lie ahead. With little regard for how it might effect everyone I then explained that while I’d done everything I could to stay alive up to that point, I felt certain that I would not survive the procedure. (From the looks on their faces, I think it was harder for them to listen than it was for me to speak.) I stated my firm intention to decline the transplant. At that point, it was clear to everyone that I was no longer seeking advice. To their credit, and to a person, they respected my decision and did their best to shield me from their personal heartbreak. With nothing left to say, the seven of us gathered our coats, stepped outside and took a walk together in the park.

P A L L I A T I O N   Over the following weeks my mood changed. Whereas I had initially felt relief that I would no longer need to put on a brave face and fight to live, I was now consumed with guilt. I felt ashamed for refusing the precious gift offered to me when other patients I knew had no such option. I also felt that I’d betrayed my primary oncologist—an internationally recognized clinical investigator—a man whom I not only respected but literally trusted with my life. It wasn’t the medical profession that I doubted, I doubted my own capacity to participate any longer as a partner in my recovery. Frankly, I was just too tired to keep on trying to live.

To my credit, I recognized that neither guilt nor shame was reason enough to reverse my decision. I accepted the ramifications of my choice, continued a final chemotherapy option as a palliative treatment for my symptoms (both an emerging new drug and a Hail Mary pass) and made funeral plans. This time, I was able to surrender to the end of life without losing face.

My authentic acceptance of death brought forward a beautiful time in my life. I settled into a calmness and an attendant sadness that wasn’t at all unpleasant. I enjoyed a new found freedom because now that I had faced the devastating loss of people and things, along with my personal and professional identities, I had nothing left to lose. This opened space for new possibilities.

F I N D I N G  P U R P O S E  After everything that had transpired, I was as surprised as anyone that what came forward for me was a deep need to share what I had learned. This need would soon consume my waking hours. My old habits took hold and I started to work continuously—in spite of my compromised state. More to the point, I became obsessed with the project. I felt it was critical for people facing a cancer diagnosis to have a companion to guide them through those first difficult weeks. Because I knew firsthand what was required to confront different phases of the cancer experience, I wanted everyone touched by cancer to have the best possible opportunity for their own healing journey, whatever the outcome might be.

In the end, it took me four years to write and design my book. If that sounds like a long time, it was. I wasn’t in good health. After my final remission, it took several years to recover from the cancer, the chemotherapy and the resulting emotional fallout. As it happened, writing From This Moment On helped me to regain my health in ways that I only became aware of years later. I was slow to understand the impact that sharing my story would have on my recovery, despite the comments of my late friend Jacqueline Osborne.

Jacquie was my high school French teacher. I feared her as a student and came to love her almost 20 years later when we met at the cancer agency and discovered that we’d both been diagnosed with non-Hodgkin’s lymphoma. Despite her own failing health, Jacquie read my draft and offered rich feedback. Only in hindsight did I understand what she meant when she told me: “Dying people don’t write books.” At the time I carelessly dismissed her words as untrue; many writers die before completing their manuscripts.

Later I realized that Jacquie understood something basic about my project that I didn’t. On the surface, it was easy to dismiss her words but what my friend was hoping to convey was this: The physical commitment of writing each day meant that I wasn’t dying… I was living my life. This is what it means to live until you die and truthfully, we don’t need a terminal diagnosis to take her wise message to heart.

S U R V I V I N G   I’ve skipped a major part of my story so I’ll have to backtrack for a moment. Obviously, I survived. I was receiving palliative chemotherapy with a new protocol and no expectation of cure when one day… I went into remission. And continued to stay in remission. A family member recently reminded me that after a reasonable amount of time, my brilliant, compassionate and wise physician told me that it was probably about time I started getting on with my life because it looked like I was going to live. I remember that I was irritated with him for such shocking honesty. I must have sensed that my safe cancer bubble was about ready to pop. The brave and stoic exit I had so carefully crafted was taking an unexpected turn.

By all accounts, I had done a commendable job of facing my death and saying goodbye to everyone and everything in my life, when by some freakish twist of fate I was being asked to start all over again from scratch—this time with the physical and psychological fallout of a life that had been razed. As absurd as this sounds, and as ungrateful, I felt completely betrayed; angry even.

B E T R A Y A L   I was lost. I couldn’t make sense of what had happened to me and I had no idea how to restart my life. My once long, curly hair was now shorter, straight and much thinner. I was overweight (I had been cautioned against allowing myself to waste away from cancer) and I lurched around like a zombie—and continued to do so for over two years—because I had spent far too much time in bed forgetting how to walk. On top of all this, I had no idea how I was going to earn a living. And oh, yes, I had no partner and no savings.

S H O C K   The first unexpected thing for me was that after accepting the inevitability of my own death, I lived. The second unexpected thing was that even though I was cured of my cancer, it would take many more years for me to heal from the experience. Frankly, after the book was published, I moved on before I really had the chance to do so. Obviously, being cured and being healed are not always linked. I had worked very hard to learn about facing cancer and terminal illness, and I had shared these lessons in the finest way I knew how. To my mind I had fulfilled to the fullest extent my modest cancer legacy. And yet, cancer had more to teach me. I had dying all figured out but living… well, maybe not so much.

S T R U G G L E   Interestingly, From This Moment On was—and still remains—a book about living. I was forced to keep on living in spite of myself. In fact, I was being forced to resume living from a full stop. You likely have little sympathy for me. Perhaps I sound ungrateful and irreverent and all sorts of other awful things. After all, I’d defied the odds and been gifted with a second chance to live. Yet somehow, I managed to make my post-cancer experience a bigger nightmare for myself than the cancer itself had ever been. Fortunately for me, I had some very smart friends and professionals in my life who realized how much I was struggling with the situation. They did everything they could to help me before I was propelled back into the world as a still-broken thing.

The only coping strategy I could muster on my own was to forget about the cancer entirely. As a method it was problematic. There was the issue of a new cancer book coupled with the somewhat ironic fact that I had dropped off the radar for many years and had to credibly account for the time.

G U I L T   My aversion to all things cancer was in part a response to the complex feelings I had for surviving when I had seen many others die. I’d outlived so many people who had desperately wanted to live. I felt guilty for living because I had no children, felt guilty for living because I was just a normal person. I worried that if I assumed any profile as a survivor I would be dismissed as an insurance risk by prospective employers. I worried that if I became ‘a professional cancer survivor’ that focus might consign me to a perpetual state of victim-hood or—in the absence of anything else—become my de facto new identity. I especially wondered if a cancer association of any type might actually attract cancer back into my life. While all these concerns were real, my greatest block to healing was the struggle to accept that it was okay to have survived cancer. 

C O D A   In truth, it’s been a long journey to recover my health and reclaim my life. It took more years than I want to admit here but I have remained cancer-free and continue to live in health.

All these years later, I’ve only recently come to appreciate the role that my book, the book’s contributors and its readers played in my healing. It’s true that I was cured but I wasn’t healed; the wounds remained.

The final healing shift began only when I was writing this website about the book. As I reread some of the reviews and the few pieces of correspondence that survived my many moves and the changes in data storage, I was touched by all the kindness… and saddened again by many of the stories. And humbled. I had a brand new opportunity to be moved by the individuals who contributed to the book’s development, the many people who have contacted me to thank me and share their own stories, and those who have posted reviews of the book. This generosity has helped me to better understand my own life-altering experience and come to terms with it.

It’s been rewarding for me to know that there are people who have found value in the book. This was my hope. What I had not anticipated was that readers would help me with my own healing transformation. The people who have reached out might be surprised to learn how important their responses were and continue to be to me. Those people who I’ve not already thanked, I honour now. Every single contribution has become a part of my healing. And I have been blessed to experience 20 more years of life since the time when I prepared myself to die.

Today I’m grateful to be alive. I’m grateful for the loved ones and strangers, peers, readers and health professionals who have given me more support than I could ever have imagined throughout my own healing journey. They have taught me about compassion; and most of all, they have taught me about love.

Arlene Cotter
Vancouver, British Columbia
January 2017

© 2017 Icon illustrations of Arlene by Ping Ki Chan
© 2017 selfArchive | Arlene Cotter
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