Revenge

I once lived life on the outside. I recall manicured lawns and gardens as far as sights could see, wafts of freshly baked bread that filled the air, tickling the senses with pleasantries that lingered. In this life, a typical daily woe might be a flat tire or someone cutting in your line at the super market. These slight setbacks might pause your pleasantness, but it was a manageable place to be, one where everything was relatively in control if you followed the golden rules. Respect others, be a good person, do unto others as you wish they would do unto you, and everything will keep working itself out. Simple, yes? If you went to the doctor when you were sick, they’d give you medicine to make you better.Right?I lived in this matrix for a long time. I took for granted how good I had it.

First came the investigation. I didn’t question, I didn’t pry. I anticipated that everyone knew much more than me in medicine-town. Especially the doctors, or their fellows or support staff — pretty much anyone involved in anything that had to do with a doctor title. What place does a young, weird, artsy-fartsy have on this section of the street? They knew about human bodies, they knew how to look at X-ray or ultrasound images, they knew what all the fancy blood work equaled to. If they prescribed something, take it, and assume all will be well again. If they don’t say anything, assume no news is good news — doctors are busy people and you are not a priority. They care and trust enough to spot anything that could be dangerously growing inside of me, right?

I recognize that not all doctors are this one main doctor from my story, but the rage I feel towards this one is a fuming fire—a deep pit of the fiercest coals that have slowly cooled but will never fully burn out. I’ll never stop wondering how different things might have turned out, had he taken more that the five allotted minutes it took to look over the initial imaging that I requested, had I not had to call multiple times to get a follow-up appointment, had he not let months go by before finally requesting that biopsy to “rule out cancer.” Had he been even a little bit concerned about me as an individual, saying something in my body was different than it always had been versus complying with the fact that I was under 40 with no breast cancer in my family. Could this be over and done with instead of forever?

Then came the long-awaited sentence. I live on the inside now. It’s de novo metastatic land, where we abide to the language, schedules, and systems of the hospital. It’s far from manicured and pleasant. It’s constantly treading through an endless barrage of worst-case scenarios, self-advocating to stay on top of what’s next, and setting my own terms and rules, despite only a sliver of possibility for a positive outcome. It’s a mess out here, but the years of peeks behind the curtain have given me some autonomy back. I see clearly now that I can and always should have used their dark and rigid rules as a guide, and not let them define me or my situation.

My revenge on that initial doctor used to include an imaginary scenario where I showed up at his door screaming incoherently in his face at how he ruined it all. The rage made my blood boil and kept me up at night. My revenge now is sharing my story of the great dismissal whenever I can. We should push for demanding agency, encourage others to be the squeaky wheel, and yell from the rooftops that we know our bodies best, not them.

Even from the inside, I can hear more voices joining the awareness choir that sings to the importance of immediate action against all odds a personalized care. The opportunities for storytelling and sharing give a fresh breath that fills the stale air. This cell may be a dark and damp one, but there are still cracks of light, sniffs of sweetness, and sounds of action.

But the most important part is to remember to keep going, march past those out-of-date statistics, and set your own golden rules. With limitations comes creativity, which can lead to hope for ourselves and others, one story at a time, one foot in front of the other.

Rethink is honoured to be the guest editor for Wildfire Magazine’s annual Metastatic Breast Cancer issue focusing on Advocacy.

^{This piece has been republished with permission from WILDFIRE Magazine, the “MBC Advocacy” issue issue, published originally October 19, 2024. More information available at  wildfirecommunity.org} 

^{WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit  wildfirecommunity.org for more info.}