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Life After Death: What I Learned from my Mother’s Cancer

I have no memories of celebrating Mother’s Day.  No handwritten cards, breakfast in beds, or days made special just for her.  And not because my family was a bunch of Hallmark holiday-hating anti-capitalists, but because my mind has somehow blacked out most memories of my mother before she was diagnosed with cancer.  The day she […]

I have no memories of celebrating Mother’s Day.  No handwritten cards, breakfast in beds, or days made special just for her.  And not because my family was a bunch of Hallmark holiday-hating anti-capitalists, but because my mind has somehow blacked out most memories of my mother before she was diagnosed with cancer.  The day she died is still so vivid in my mind, like it was yesterday, but yet I can’t recall a single celebratory moment.

At the time of her diagnosis, she was a 43-year-old mother of two daughters and the CEO of an addiction treatment center for women.  I was a zealous 14-year-old who knew all of life’s lessons and like many daughters, thought my mother was invincible.

We had already overcome so much together.  She divorced my abusive father upon discovery of his affairs when I was two and moved us into a studio apartment in a neighboring city—close enough to dampen the blow, but far enough to create our own space.  And life seemed to be manageable on our own, life seemed to normalize.  Until my father’s anger and quest for revenge consumed him and his threats began to materialize.

Michigan was no longer safe for us, so we needed to find a new home.  And that home would be Canada, a country that welcomed and embraced us as two of its own.

We built a new life, started a new family with my half-sister and step-father, and our traumatic past began to fade.

Fast forward ten years and we were presented with another hurdle, another metamorphic challenge to overcome. 

Cancer.  And not just any cancer, but a rare clear cell sarcoma tumor that took home beside her sciatic nerve.  Surgery would mean risking the mobility of her leg.  Chemotherapy would be a shot in the dark.  “Terminal” was her first and only diagnosis, but she refused to accept that fate.

Six months and one clinical trial passed before I was called from school and raced to the hospital.  It was time for us to exchange our last words.  I told her I loved her and didn’t know what I would do without her, but that everything would be ok.  I started to recall the letters I wrote to her as a child, you know the ones you write when you’re in trouble with your parents?  “I’m sorry, Mom.  I didn’t mean to upset you.  I love you and don’t know what I would do without you.”

I was so sorry and felt so helpless.  She was gone.  And now I had to figure out how to live without her, what new role I would assume with my nine-year-old sister and 42-year-old father.

My birthday came a week after her death, then came Thanksgiving and Christmas.  Every holiday was another reminder she wasn’t here—as if we needed more reminders.

As the years have passed, I’ve become increasingly numb to the birthdays, holidays, and milestones.  I’ve been able to “focus on the positive” and everything I have to be grateful for. 

But what people who don’t have cancer or who haven’t lost someone to this disease don’t realize, is that it is ok to talk about it.  It is ok to grieve.  It is ok to discuss potential eventualities, even if it’s not the most uplifting conversation.  It is ok for the flurry of emotions—happiness, sadness, anger, and surprise—to rear their heads at inopportune times. 

Cancer is inopportune.  Cancer, like life, just happens—without planning, without control, and without clearly defined rules.  And without rules, we’re left to learn from what has worked and failed for others.

It is this complexity of the human experience of living with cancer—and lack of supportive care options—that inspired me to pivot my career and join an oncology biotech, Immunomedics, as Head of Patient Experience and Corporate Communications.  It was another milestone I wish I could have shared with my mother, but also a once in a lifetime opportunity to make a difference and give a voice to those who often go unheard.

And my mother has very much been a part of my work thus far, helping me connect more deeply with patients, their caregivers, physicians, and nurses, to better understand the impact cancer has had on their lives.  Not just in the context of treatment options or clinical outcomes, but in the context of day-to-day experiences and moments that define their lives with cancer.

All of this work has revealed real human stories, needs, and connections.  It has revealed vulnerable and powerful moments that we—and the medical community—seldom pay attention to or communicate.  Like how cancer competes for your identity—as a mother, daughter, or wife—or how the fear of recurrence manifests in a desperate race to cram all of the parenting in before time runs out.

I believe that these stories will drive change and innovation in the way we approach product development, not just at Immunomedics but in the industry at large, because it has become clear that we need to broaden the narrative around cancer if we truly want to support patients and those impacted by this disease in the best way possible.

This need drove me to create Humanly, a digital community engagement platform that we hope will humanize cancer, be the catalyst for self-advocacy, and shift the focus from disease to life with disease. 

Humanly launched with its first product and social network, Our Story, providing a space for people to share their experiences with cancer and connect with others who have gone through something similar.  It reflects personal stories, words of reflection, and helpful resources from those who have navigated life with the disease, all in one place.  And its design is democratic in nature, supporting all stakeholders in the cancer ecosystem and creating greater transparency amongst patients, their families, oncologists, and nurses.

And as the world prepares for another day of celebrating its mothers, Humanly is creating a collection of thoughts and stories from others living with the disease during this time of year—from Marisa sharing her experience with a cancer diagnosis after losing her own mother to the disease to Erika reflecting on what Mother’s Day reminds her of, and what she is grateful for.

I too will share a reflection about my mother, one that is sure to make me nostalgic for the past but grateful for the life I have yet to live—a life that she will always, in some way, be a part of.  

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