On a late fall day, at the age of 35, I realized my mom was going to die.
I know; everyone dies. Why the surprise, then?
The answer is simple: my mom was a super hero. And super heroes aren’t supposed to die.
Five and half years earlier, my young, vibrant, yoga-practicing, granola-eating, world-travelling teacher mom received a devastating diagnosis. She had inflammatory breast cancer, an aggressive bitch of a disease that is usually diagnosed in late stage, meaning that the cancer has already spread to other parts of the body. In my mom’s case, there were metastases in the liver, bones, and lymph nodes.
I will never forget that summer evening; my brother and I, sitting across from my mom and dad in their sunny living room, my mom crying and apologizing for not being brave. I was saying the things you say when people tell you they have cancer. You can beat this. I’m here for you. We’ve got you.
I went home and Googled. And it was devastating. There were so many stories of women being fine one day, and dead six months later. I couldn’t believe then that I had said things like “you can beat this.” I knew then that she wouldn’t. What I didn’t know at the time was that I was the daughter of a woman who would defeat many odds.
We did all the things you do when you’re a close family who has been punched in the junk with terrible news. We attended the information clinics, took my mom to appointments, made the most of every single minute. Chemo kicked my mom’s butt but she was so strong. When she returned from the hospital after her mastectomy, she greeted me at her front door wearing a shirt that said “I may have lost my boob, but I haven’t lost my sense of humour.”
We went wig shopping together. I fought back tears and swallowed the giant lump in my throat as the stylist shaved what was left of her hair. I hated the wig. I think my mom did too. But for a while, it made her feel normal. She eventually wore the wig less and, when chemo would make her lose her hair again, she would wear beautiful scarves and look ever so fashionable.
We went prosthesis shopping. Never before did I think I would be telling my mom to “go bigger” or that she was lopsided. We laughed a lot in those awkward moments.
Six months went by. A year. Two. Her cancer responded to a biologic medicine. She was even able to go off chemo several times. Every time she was told the cancer was pushing back, and that a new round of chemo was needed, she felt defeated. But every time, she soldiered on. She would say that, when sitting in the oncology clinic being infused through a port in her chest, she would picture millions of microscopic Arnold Schwarzeneggers marching through her body, terminating even the most persistent of cancer cells.
She developed lymphedema, which caused her arm and hand to swell and retain fluid. She had to wear a custom compression sleeve and glove 23 hours per day.
Three years went by. There were trips and family events. My brother’s wedding. The birth of my twin daughters. My mom found such great joy in being a grandmother, and she was so crazy good at it. We both spent Christmas in the same hospital; me following the C-section birth of my kids, her due to complications from treatment. Six weeks later, when my husband returned to work, she was over every day to help me with the overwhelming task of caring for two newborns. She loved it. I loved it. I was so grateful. Maybe she wasn’t going to die after all. She was doing so well.
More family time, events and vacations ensued. My girls’ first birthday, another Christmas, another year. Summer. A beautiful, warm summer filled with outdoor play and community activities and bike rides. Then, fall, another fall… with its breath-taking colours and nostalgia-inducing smells.
And that’s when everything turned grey.
My mom lost her energy, her appetite, her breath. Chemo started again for the umpteenth time. It wasn’t working. Even we could see that. The lumps and bumps on her neck and chest threatened to poke through her skin.
She was hospitalized, transfused, poked and prodded. There was the possibility of a clinical trial; the last resort. Timing was almost perfect.
Only it wasn’t at all.
Back in the hospital with pleural and cardiac effusions (which, as I understand it, is fluid build-up around the heart and lungs) and a growing tummy of malignant ascites, she made peace with her own death. Or maybe she had five and half years prior. I’m not sure. We had rented a cottage in the mountains to celebrate the new year as a family, and she urged us to convince my dad to keep the reservation, so that we could be together after she was gone. I couldn’t understand what she was saying.
She talked about how she had written down her wishes for a party instead of a funeral. I couldn’t figure out why she was talking about that.
She told me I was a good mom, that she was proud of me, that I could do this without her, to take good care of myself. What the fuck was she talking about?
There wasn’t going to be a clinical trial. Her doctors were working to get her comfortable enough to discharge her so that she could go home and live her final days or weeks or months at home. I was the lucky one to jail-break her out of that horrible oncology ward, where I had witnessed the cries of people losing loved ones and had felt so sad for them. For them.
She came home on a Monday. The following day, I made arrangements to take several weeks of compassionate care leave away from work, so that I could be with her and my dad. I was going to work the rest of that week, and then we would take it one day at a time.
I brought the girls over to see her Tuesday. Then I visited on Wednesday and the change in her was palpable. Regardless of everything, that’s the day I realized she was going to die.
The next morning, my father called and calmly asked that I come over. In record time, I had both kids in the car and at day care. I still don’t know how I managed that. I knew something was terribly wrong.
Early that December 3, my mom had taken her last breath.
Five and half years after her diagnosis. Three months after our last golf game together. One month after my dad retired. Eighteen days short of her granddaughters’ second birthday.
Those days and weeks after she died are a blur. My dad cancelled the ski cottage reservation. I wonder how the people who rented it after us felt when they got the call there had been a last minute cancellation, at one of the busiest times of the year. Did they have any idea of what our family was going through? It didn’t matter, I know that. But I still wondered.
I didn’t return to work until the new year. My two daughters kept me alive and functioning, but that’s pretty much it. I cried. A lot. All the time. When a month, then two, had passed, I sometimes found myself wishing it was December 3 all over again. Because at least I’d have the permission to completely lose my shit. Most had moved on, as they should. But those of us closest to my mom can’t.
Because, you see, my mom actually was a super hero. And, as it turns out, super heroes die. She was wise, unbelievably caring, gave a lot of herself until her very last day. Her illness didn’t define her; it elevated her. She fundraised for others with cancer. She educated. She volunteered at the local food bank even when cancer took her teaching career away from her.
And I am so proud of her. She was taken way too soon, but I was luckier than most to have 35 years with a super hero mom.
So now, as I start to piece together what life without her is supposed to be, I look back on this journey, where the caregiver role slowly and slyly was reversed. A journey without a clear path, destination or map. I’m not sure what lesson there is to learn from it, or if I am to learn anything at all.
It’s a grey rainy spring day today. It looks and feels exactly like that December 3 did. So today, I’m going to pretend it is and wallow and cry and curse until I can’t anymore. Then I’ll pick myself up, get my girls from day care, and we’ll have a dance party. Because that’s exactly what super heroes do.
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