Without the promise of time to accomplish a life’s goals in a manageable arc, I’m trying to cram it all in now.
On April 29, I went to a screening of
I AM ANNA, hosted by Rethink Breast Cancer. The event has been lingering with me since.
The documentary focuses on Anna Craig, a young adult living with metastatic breast cancer, and her quest to build her dream house for her children. Following the screening, Anna and three young women talked openly about the issues they face living with metastatic breast cancer. They talked about the importance of leaving a legacy, the urgency felt when planning life in 3-month increments, and the struggle to have all the experiences one wants from life while respecting the long-term needs of family.
I found myself nodding in agreement at nearly every statement as I tried to imagine what it would feel like be in their shoes. Here were four women who looked just as healthy as me, and yet they were talking about “living condensed” because things could turn bad very quickly. It was a shocking realization that continues to leave me unsettled.
It was clear that each woman on the panel had a lot to say. After the event, panelist Teva Harrison (@robotpilot on Twitter) was kind enough to continue the conversation with me over email. She’s recently had her comics about life with metastatic cancer published in
The Walrus, and I highly recommend you check them out.
You and the other panelists talked about a lot of misunderstandings when it comes to young adults and metastatic cancers. What is one thing people could understand better?
Teva: I’m not sure that people really understand that young people are dying. I think that many people believe that we have a cure, and if you’re strong enough to withstand it, you’ll be okay. Cancer can be really wily, finding its way around each new defense, and that has nothing to do with the relative strength or vigour of any given person.
The truth is, young adults with metastatic cancer are still dying. I can only speak with any confidence about my own cancer, which is breast cancer, and even with the latest treatments, median survival from a metastatic breast cancer (MBC) diagnosis is 3 years, a number that hasn’t increased meaningfully in 20 years. And currently, research funding for MBC accounts for only 7% of the total breast cancer research investment.
I think that many people think that if cancer is caught early, when you’re young, and strong enough to fight, it can be cured. Public messaging about the idea of survivorship and a cure is so clear and pervasive that people think that everybody survives cancer now, provided that they live a healthy life, stay positive and seek proper medical attention.
But that’s not the whole story, is it?
Teva: I can’t tell you how many times I’ve heard, “But you’re so young!” or, “At least they caught it early,” which simply isn’t true. It’s hard for people to believe that our healthcare system could allow a cancer to advance to stage 4 without treating it. Sadly, though, many young adults, myself included, are misdiagnosed repeatedly, while the cancer progresses. We show up in pain, and we’re told that cancer doesn’t hurt. If there are doctors who think that young, fit people won’t have cancer, how can we expect the general public to understand?
Like many people living with metastatic disease, I look great, which makes it hard for people to understand how serious my disease is now. People look me up and down and ask if I’m better now.
What does medical treatment for metastatic cancer look like?
Teva: People often ask me when I’ll be done with my treatment. When I say, “Never,” they look really uncomfortable. But their discomfort isn’t really my responsibility. My cancer is incurable and I’ll be in treatment for the rest of my life.
Since I can’t be cured (with currently available drugs), the focus is on stopping the progress of my disease while keeping the quality of my life as good as possible, for as long as possible. That means starting with the gentlest treatment, then gradually working through the options, as each treatment will eventually fail me. People expect a cancer patient to look a certain way; bald, toque or baseball cap, no eyebrows, sallow eyes, emaciated. I have lost a lot of weight, but that only means that people think I look better, which is a kind of societal sickness, in my opinion.
How does life change after being diagnosed with stage 4 cancer as a young adult?
Teva: Whether it’s family or career, we were probably just getting it off the ground when cancer hit, and our aspirations have shifted from infinite possibilities to a simple desire to live, hopefully with minimal pain. I thought that I had all the time in the world to have kids, so I put it off. My husband and I only started to try mere months before we found out about my already-metastatic cancer. I had recently been promoted into a dream job, leading a department I helped to create, at a charity I really believe in.
Living with metastatic cancer can be like living in the shadows.
Tell me more about how your daily life has changed.
Teva: Before, I was working all the time at a job I loved, as Marketing Director for the Nature Conservancy of Canada. I was in an office until 6 or 7 every day, then likely going to an event of some sort, either for work or with my husband. I was a runner, although I’d stopped training for another half-marathon because of pain that nobody seemed able to diagnose.
I tried to work after diagnosis, but I had an emotional break. I couldn’t stop crying long enough to work an entire day. I was grieving so much that I couldn’t do my job. So, I went on leave. Nobody can tell me how much time I have (and, really, I wouldn’t want to know, I like to believe that I’ll be lucky) so I couldn’t imagine working on long-term plans at work.
I had to let go of the idea of having children with my husband as my treatment included an oophorectomy. That’s been really difficult, emotionally.
I have always been an artist, but I hadn’t drawn much lately, as work took up more and more of my time. When I got sick, I started drawing comics as a way of processing what is happening in my body. It’s been a hugely effective way of processing for me, and I’ve started to share them publicly, both on my own blog, and on The Walrus magazine’s website. That has opened up an amazing dialogue with other people living with metastatic disease, and a very supportive community.
What has stayed the same?
Teva: Like before, I still work in my garden, and this time of year is amazing there, watching everything come up and bloom. I still ride my bike, although I needed to get a lighter one so I can lift it without risking hurting my back, where I have mets in my spine. I used to force myself to lift heavy things, to push through pain. I don’t do that anymore. I am very respectful of my pain, and what it might be telling me about changes to my disease.
Why is it important to talk about the needs of young adults with metastatic cancer separately from the needs of other young adults with cancer?
Like many people living with metastatic disease, I look great, which makes it hard for people to understand how serious my disease is now.
Teva: For me, although my health is really good right now, and my current treatment is keeping my disease at bay, I still find that I’m in a position where I feel the need to consider my end-of-life wishes. While other young cancer patients are trying to get on with their lives, having a reasonable expectation that they’ll live lives of a normal length, I’m rushing ahead to big questions like, what is my legacy going to be? Without the promise of time to accomplish a life’s goals in a manageable arc, I’m trying to cram it all in now.
I can only speak with certainty about myself. I know that other young adults who have kids have a whole other set of hopes and fears. And I know a number of people who are younger than I am, or single, find themselves living with their parents again. That can be a really difficult loss of independence. That’s not part of my story, though.
What do you want people know about the experience of living with metastatic cancer?
Teva: Living with metastatic cancer can be like living in the shadows. It can be incredibly lonely, with many loved ones waiting for us to make the first move, because they’re so scared of getting it wrong. If we’ve stopped working or going to school, we go from busy days full of social interaction with our peers, to long days full of waiting and hospitals, or home, alone. We’re thinking about big questions like what it all means, what our legacy will be, what comes after this life. We’re probably terrified, but we still enjoy the same things we used to, if we can do them, and we want to have normal lives. We probably live with a lot of pain and discomfort, some from the disease and some side effects of treatment.
We probably don’t want to hear about your aunt who fought like hell and died of cancer, but we’d love to hear about it if you know somebody who has been living for a really long time with cancer, and doing well.
What is one thing anyone could do today to help support young adults with metastatic cancer?
Teva: Donate to research! If we had a cure, we could get on with our lives. That would be amazing. Honestly, I cannot stress what a miracle that would be for each of us. I’ve never experienced stress that comes close to what I live with every day with this disease. I dream about having that stress, that fear and anxiety, lifted.
Thank you Teva for the honest and candid conversation.
Find out how you can donate to cancer research by contacting
The Princess Margaret Cancer Foundation.