Cancer is not binary
“But you’re okay now, right?”
I blink and wonder internally, “Am I okay?” I think about the exhaustion that I feel on some days, the nausea that still comes up at the sight of certain foods or smells that remind me of chemotherapy, the random cramps from nerve damage, the loss of community during my isolation when I was immunocompromised, the burnout of my caregivers…
I look back at the concern in the eyes of my acquaintance asking me the question. I decide on a half-truth. “Yeah, I’m getting better every day.”
…
People tend to think of cancer in binary terms. You have cancer or you’re cured. Your cancer is treatable or it’s not. You’re dying, or you’re not. Even though I hate to admit it, I too had a black and white mentality towards cancer. It wasn’t until my treatment that a new world of gray opened up to me—the difficulties of getting diagnosed (read more about how I was gaslighted by doctors for 15 months here), the uncertainties of imaging, the delays to treatment, the problems of accessing life-saving medicines, the list goes on. And if I’m being really honest, more so than during active treatment, I understood the true repercussions of being a young cancer patient after my treatment had finished.
…
It was exactly a year ago, that my family and I had a small celebration for being done with treatment and being declared to be in NED status (no evidence of disease). I was tired—I remember dressing up felt like it took everything out of me—but was exuberant and hopeful for the future. My treatment had consisted of chemotherapy every two weeks for six months during which I was mostly bedridden, in debilitating pain from chemo-induced stomach mucositis and barely able to eat. But now that it was done, I was looking forward to spending time with my family again, especially my toddler, and going back to re-building our business, which my sister and I had lovingly started a year before my diagnosis. Little did I know that my troubles were far from over.
The first thing I noticed was the exhaustion. As the working day drew to a close, I used to feel like I could not keep my eyes open. But how can you sleep when you have a business to build? A toddler to take care of? I pushed through – only to collapse a month after starting back work. I started to notice other things as well – loss of peripheral vision from nerve damage, numbness in my fingers and toes, inability to taste, loss of muscles and a severely weakened immune system (I ended up in a hospital from a minor cold from my daughter).
“But I’m supposed to be okay now,” I cried at my next palliative care appointment. My palliative care doctor (probably the only doctor who had advocated for me and my comfort throughout my cancer journey) explained to me that any cancer treatment was the war, and that the rebuilding and healing starts only once the war (aka chemo in my case) was over. “You realize, the chemotherapy obliterated any rapidly growing cells in your body – good or bad. It takes time to heal from that.”
Cancer treatment is the war, and the healing starts once the war is over.
A year into my healing journey, I can finally appreciate the truth and depth behind my doctor’s words. While I can work full time now and take care of my toddler, I still have those moments of bone-deep exhaustion where I just need to sleep to recover. My handwriting is finally back to normal (although some of the numbness still lingers), my peripheral vision and taste are slowly coming and while I’m still in physical therapy, I just took my first trip in three years and was able to walk almost normally!
And the mental trauma? I’m not sure if I’ve processed it enough to write about it. There is something about having cancer as a young adult that scars you permanently. How many friends ghosted me because they were uncomfortable to see me fighting death while they were building their lives and careers? How many precious moments and milestones of my toddler have I missed while I was bedridden (I got cancer while pregnant and didn’t get diagnosed until my child’s 1st birthday). How much time have I lost to build my career and the company that I love? And finally, how much time do I have left to do all those things?
There are other difficulties too, which often get swept under the rug, but in reality, have a variety of repercussions for cancer survivors. For example, when I was fully bald in treatment, people assumed I was sick. But as I started growing more hair and the state of my health became more ambiguous to understand from appearance alone, I started getting comments about how I can develop a “neater appearance” or cultivate a more “professional look”. But if I complained about the difficulties of hair loss, I was often met with, “It’s just hair, you should be grateful you’re alive.” Now don’t get me wrong, I am grateful. Being as sick as I was, I know how lucky I am to be alive today. But being grateful doesn’t negate all the difficult or bad things, especially when I’m a BIPOC cancer patient navigating an ableist and unfair world, that often judges me by the color of my skin and the unruliness of my beautiful cancer curls.
Being grateful doesn’t negate all the difficult or bad things.
Going back to my main point – cancer is not binary. A cancer patient is not automatically healed or “okay” right after treatment. It will take months, if not years for them to get back to some semblance of normal (if that). Some of the side effects from treatment will heal eventually (like my neuropathy). Others won’t (like my infertility). Some people develop weakened heart and lungs from treatment, others may develop secondary cancers from the treatment itself. Survivors who’ve had organs surgically removed or body parts amputated, will have to learn how to live without them. Not to mention, the anxiety of relapse. A year out, and I’m still getting scanned every 3 months to make sure that the cancer hasn’t come back.
So, when you meet a recovering cancer patient, please don’t ask them if they’re okay now. Let’s face it – we ask that because we all want a hero’s journey and a happy ending so that we don’t have to think about the unfairness of life. If you really want to know how they are, don’t treat them like heroes who “should” create inspiration for the world from their pain. Treat them instead like humans who have suffered and need love, understanding, and empathy. In other words, just be there for them. Love them, affirm them and offer your genuine help wherever you can. And then one day, if they want to tell you their cancer story, like I’m doing today, just tell them, “I’m here” and listen.
