Tag Archives: chemo

Still Here

It’s hard to believe I have cancer. Four years ago I had a port implanted in my chest and started chemotherapy. Four years later, I’m still here. I’m still on chemotherapy. It still feels surreal. Nonetheless, I am here.

I joked with my dermatologist that I’ve had cancer for as long as it takes to do an undergraduate degree. Although many of the feelings of grief, disbelief, wonder, and passion for living echo what I felt four years ago, there is also the journey I have been on and growth I have had in this time. Surprisingly, the hardest lessons have not been the innumerable drug names or what these drugs are doing or what all the different proteins and enzymes in my bloodwork are showing. The hardest lessons are what I’ve learned about cancer and the profound impacts of ableism on us—all of us. To this latter point, I’ll say that I still struggle with the ableist notions from which my understanding of the world grew, but I’m improving.

I’ve touched on my ableist belief system and my relationship with wellness culture before in my writing. Ableism is so ubiquitous and entrenched in society that it is a hard to shake. However, I’m becoming more adept at spotting ableist ideas and phrases now. This practice of spotting has allowed me to deepen my imagining of a world that’s possible if we treated disability differently.

I have much work to do toward this imagining. First, I must stop blaming myself for cancer. At least weekly, I see a post on social media or read an article or overhear a conversation where the individual with cancer is blamed for their cancer or rewarded for their remission: “if only they had been more healthy…”, “if only they had eaten better…”, “if only they had decided to do a complete 180 on their life to fight cancer…”. I understand how blame—or, to say it more gently, a cause and effect story—can give a sense of control and safety. And while I often think of myself as someone who is able to dwell in uncertainty, it is a draining practice. And so, I resort to ableism and the blaming of my imperfect body and my imperfect will: for skipping a workout, or eating a slice of cake, or staying out late for a few more songs to dance to.

I imagine, in a less ableist world, we see more grey areas—the magic in the liminal spaces—and are able to dwell in that uncertainty. We are not afraid of the vast differences in bodies and minds, allowing us to be gentler with “imperfections.” Perhaps we don’t use the words ‘perfection’ or ‘imperfection’ anymore. Perhaps, as our need for control gently dissolves, we see our connections to one another rather than the us-versus-them that’s awakened by fear and blame. Perhaps we feel our shared responsibility to care for our collective wellbeing. Cancer is not caused or reversed or worsened by the sole actions of an individual—it takes a community. It really does. And I am so thankful for mine.

For those who have stuck with me, thank you. Enough philosophizing; here’s an update of happenings since my last post to this site: I completed my creative writing certificate from the University of Calgary and am continuing to create and submit words. I pursued a liver transplant, but have decided that it is not right for me at this time. This is a tough decision to make; liver transplants do offer some patients many years of survival. However, recurrence rates are high (in my opinion), the surgery is risky, and I’d have more chronic health issues to manage for the rest of my life. I continued the chemotherapy treatment that caused skin irritation until June, at which point my health team and I decided it best to look at other treatments. Now, I am back on the chemotherapy regimen I had four years ago, with the hopes that it will be as effective as it was then and that the associated neuropathy holds off for a while. I also went to Iceland with my friend in March, which was an extraordinary adventure to an absolutely unique place. While travel was stressful for me, I somehow managed not to get sick and enjoy much of Icelandic culture and scenery.

I’m looking forward to the rest of 2025 and to being able to enjoy the outdoors a bit more now that my skin is not as sensitive to the sun. I’ll continue to write and learn (for another four years, at least, hopefully). And I’m continuing to look for emerging cancer treatments that might work for me; there are some promising therapies on the way to Canada, so stay tuned.

It’s hard to believe this is my life. It’s hard to accept my illness. But I’m getting better at that too!

References

Lorde, Audre. The cancer journals. Penguin, 2020.

Gratitude

Another milestone approaches, one I’d never thought I’d reach: my fiftieth round of chemo. Honestly, I thought I’d have left cancer well behind me by this point. There’s a small chance I have; there’s many chances I haven’t. I’m choosing a practical optimism at every opportunity I get, but to be honest, it’s difficult to deal with the uncertainty of what this actually means.

The remaining three tumors in my liver (each the size of dice) appear to be largely calcified—like little skeletons buried in the vibrant ecosystem of my liver. I’m so grateful and awed by the ways the body strives to live. And, I’m grateful for medicine, and the ongoing development of new and better tests and therapies. The thought of going off of the treatment that has kept me alive for the last thirty-two months is frightening, while also relieving (two seemingly competing truths existing together). But even to be here is amazing. Even just fifteen years ago, I wouldn’t have had access to the same drugs I have today.

This got me thinking. I looked up causes of death through history. The first thing I saw was that only a century ago almost fifty percent of people died before they were adults. Nowadays, that number is below one percent. Frankly, I’d be dead if I was born a century earlier. I had pneumonia when I was around eight years old. It would have killed me a hundred years ago, and it could have killed me had I not been born in a wealthy country even now. Type 1 diabetes was a miserable death sentence a century ago. It’s frankly amazing that discoveries and innovations, combined with a handful of other close calls, have given me as much life as I have. And this is probably true for nearly half of the people reading this, half of your friends, half of your coworkers, half of the brilliant people making these discoveries.

I have a lot of gratitude these days. It keeps me uplifted and hopeful. It helps me see all beings as caring and giving of their best. It helps me see and feel my place in the web of being. Basically, it helps me just to see so much. I think about being a kid, and writing thank you cards to family members after Christmas gifts were exchanged. It was a simple practice of gratitude that informed my inclination to the practice later in life. And am I ever thankful for that too.

I remember (perhaps inaccurately, but to the best of my knowledge) being part of the health and safety committee at work, and as part of a mental health strategy, we implemented a thank you board in the office. It was largely a success, but concerns were raised that we shouldn’t be thanking people just for doing their jobs. I get where people are coming from with this argument, but I put forth that thanking someone is a rather simple action in comparison to the meaningful effect it can have. And who knows, some people struggle to get out of bed in the morning, how does some recognition change their morning? Others may feel like an imposter, or face any other struggles that plague us in the workplace, how does some appreciation change their work? I think about how differently I show up to conversations when someone simply shows appreciation for the effort I have put into a piece of work, even if my efforts turn out to be misinformed or otherwise shit.

In this spirit of appreciation, I’ll stop with the sappy, self-helpy vibes and say that the best thing these days is my hair. Although there is chemo-induced thinning, there is also chemo-induced curls. After getting over the initial confusion of coping with this newfound mess, I found a style that I adore. I honestly think that this is the first time in my life that I’m genuinely pleased with how my hair looks. It’s a funny fluff on the top of my head, which is perfect for my face shape, looks the perfect amount of androgynous, actually requires very minimal styling, and the curl shampoo and conditioner moisturizes my scalp so no more dry skin flakes! It’s a bit weird to be overjoyed with a hairstyle that was caused by cancer treatment, but there you have it. Thanks chemo!

Chemo curls always look cool

I’ll leave it there for now. I’ve been changing and learning (and being grateful for my consistently curious self) these last thirty-two months. Perhaps I’ll say more next time. Be well and be grateful!