Andrea Gibson Saved My Life with Their Instagram Updates on Their Cancer Journey

How Andrea's radical openness became my source of energy and support

Poet Andrea Gibson, via their Substack

Andrea Gibson saved my life.

Long before

Andrea Gibson

themself did, their writing moved me at my core. Months after moving to Denver in early 1999, I was in sought-out belly dance classes at the Mercury Cafe, and a part-time staffer not long after that. One of the benefits that came with bartending in the dance hall is the biannual pause on usual programming for a weekend of shows by feminist theater troupe Vox Feminista.

The standouts from those shows include the first time I heard the phrase “May the Forest Bewitch You,” the video of the cast’s visit to the visitor center of Focus on the Family, and each and every time Andrea Gibson stepped up to the mic. Shows were always packed, and every attendee was stunned into silence when Andrea spoke, so much so that most of the room could hear the motor of the ice machine and beer cooler behind me at the bar. They had not been in Boulder for long, and we in the audience were the lucky ones to be in on this gift from the start.

Over time, I lost track of their accomplishments other than noting their National Slam successes. I was thrilled when, on a visit to see my family in New York, I saw their name as an upcoming headliner on an electronic marquee near Times Square. This success couldn’t happen to someone more deserving of being heard.

I was a relatively late adopter of Instagram, just months before Covid hit. Once I did, I paid mind to some follow recommendations based on my Facebook feed and was soon following Andrea. To be honest, it was never a specific poem that grabbed me but their work, and their observations, in general. I saw the world from not just a different perspective but with far more nuance than I myself had the capacity to perceive when listening to them. Their words themselves would fade from my mind almost immediately after hearing them spoken, but the desire to have Andrea’s subtlety of words, of insight, of feeling, of depth, remained. And whenever a reel or post showed up in my feed, I would watch and listen. I didn’t have their highs. I also didn’t have their lows. As the world hurtled into Covid times, like many, I relied on social media for connection. In the face of adversity, some people withdraw, some become more shallow, and others find how deep they are. I was, and despite the past few years, still am, much more the former. Andrea was the latter.

Flash forward to 2021. The lone symptom started that spring and was rather innocuous. Then, much less so and most definitely problematic. There was no pain, just vaginal discharge that evolved into colors that should not be exiting one's uterus; it was not at all bacterial or viral. I had been a health care provider for 15 years before changing gears with master’s degrees in Acupuncture and Asian Medicine and Public Health Policy, but I was, and am, always more likely to push others to seek answers for issues that would arise than myself.

I emailed the medical director at the clinic where I received primary care, as my provider had recently retired, who replied with agreement that I had a symptom in need of testing and that I would hear from the clinic staff to schedule an appointment shortly. Over a week later I saw the reel Andrea had posted a few days earlier, sharing their diagnosis and treatment thus far.

It had been several days since I was told I would be called and hadn’t been; it was time to do as I told others. I called the clinic, waiting on hold for a solid half hour, only to be told, “oh yes, we were supposed to call you and schedule you last week.” I was in the office three days later. Then, the referral and waiting games, and the begging for the soonest available options, began. At this same time, I noticed that Andrea started posting about their experience being diagnosed with and undergoing early-stage treatment for ovarian cancer. Their postings shook me awake.

My late Eastern medicine mentor, a brilliant pulse diagnostician, had told me two decades earlier that if I were ever to have cancer that it would be gynecological. But it couldn’t be that; it was likely just old endometrial lining sloughing off thanks to the fibroids that hadn’t shrunk post menopause as expected.

Each step took way longer than it should have, but Andrea’s posts and videos were both a bolster and a balm, supporting me in being noisy, putting myself on cancellation lists, and doing what I could to get in for testing as soon as I could. In a process that involved scheduling for incorrect tests and needless delays, I finally received an endometrial biopsy after three and a half months. While dealing with what turned out to be permanent vision damage from the scopolamine patch prescribed for significant gastrointestinal difficulties from anesthesia, I received the results via my online portal that my biopsy result was adenocarcinoma, a cancer of the endometrial lining.

But I had Andrea’s Instagram missives to follow as support and, on the day I was running back and forth to the Denver Health campus to make sure my blurred vision was a now-permanent side effect of scopolamine and not something worse, while finding out my diagnosis and trying to take it all in, Andrea posted a video of themself reciting a poem, “Instead of Depression,” from the book they were just days from publishing, You Better Be Lightning. They said, in part:

try calling it hibernation.

Imagine the darkness is a cave

in which you will be nurtured

by doing absolutely nothing.

The course of treatment was standard, starting with a radical hysterectomy, plus removal of fibroids and a pelvic lymph node from each side. But with no one besides me having any sense of urgency, it took seven weeks (postponed from five) from the biopsy when I finally went in for the surgery. I had switched my insurance during open enrollment the week before my biopsy, but it wouldn’t go into effect for two more months, leaving me with the city hospital I had been happy to support by paying into their insurance plan when I was a low utilizer of the system. Needless to say, when the results came in three weeks post-op, I was the only one not surprised by the stage 3 diagnosis and thankful that it was a new year in which I had a new insurance plan.

With a change of providers, my treatment progressed at an accelerated rate from pre-chemotherapy preparation to the chemotherapy protocol of three and a half hours of chemo infused every three weeks for a total of six sessions. I lost my hair quickly, despite using a cold cap for the first and second infusions, and developed debilitating peripheral neuropathy and pain that might have been even worse if not for my cold pack-stuffed mitts and socks (unlike Andrea, I never took mine off to write, but I did occasionally take a mitt off to more easily turn a page), but surprisingly had few digestive difficulties as it’s the one symptom for which there are truly effective medications. It was frustrating to have everyone ask why I lost no weight during treatment, and even gained a few pounds.

One of my most interesting chemotherapy experiences was just how functional eyebrows and eyelashes are, something I’d taken for granted until they fell out. And if chemo is debilitating, radiation on top of it is utterly exhausting. Even though I achieved the unexpected—a PET scan showing no evidence of disease following the chemo protocol—I went through a somewhat shortened course of radiation on the specific formerly metabolically cancerous lymph nodes to further diminish the possibility of recurrence.

I spent the bulk of the summer of 2022 in bed or sprawled on my late grandmother’s chaise I had inherited decades earlier, sometimes too tired to choose something to watch on TV and mindlessly scrolling Instagram, slightly perking up for the occasional reel, including those from Andrea. However, it was devastating to see Andrea’s announcement of a recurrence midway through my radiation treatment series.

I made it through treatment, was deemed recovered enough to return to work (even though I wasn’t), and continued to move forward on automatic pilot. I pushed myself to take a couple of local weekend trips, flew to New York for a full week of Chinese movement practice qi gong on the one-year anniversary of my final chemo session, and then left my job to purge and pack what I kept in storage in advance of what became a 10-month road trip of the west and move back to my hometown of New York. Throughout, I went for biannual scans, continually coming up clean. Having an estrogen-fed tumor and no longer having a source of estrogen in my body had left me in a good position to remain no evidence of disease.

One thing I never really did, at least not with the subtlety and depth of Andrea, is fully integrate my experience. Was that because I received that no evidence of disease test result, the most recent of which came in late May of this year, while Andrea’s was terminal? I would listen to Andrea move through their final years with profundity, joy, and utter presence in the present. I counted the days until I could leave my job, until I left Denver. I thought of the future destinations on my road trip as much as I was present where I was, blinders on and ever pushing forward.

It took months on the road to plan and book accommodation no more than two weeks in advance, to be able to roll with last-minute changes, to realize I didn’t have to see everything in my path, and to be as happy with JOMO (joy of missing out) as I was stressed by FOMO, and be as present in my present as possible, even if it wasn't very much. I succumbed to poor sleep and an irritable demeanor and pushed through on my travel agenda despite fatigue and injury. I even kept chugging along my first few days back with my parents, washing, sorting, and finding places for everything I had crammed into my car within 48 hours. And then, I stopped.

Despite working on resumes and periodically applying for jobs, I have spent nearly the past year just being. Sitting around, sleeping (sometimes successfully, more often not). Taking advantage of the fact that my parents are still alive and spending time with them, but not enough. Not taking advantage much of being back in the city that, unlike me, never sleeps and hiding out while in one of the most exciting places in the world. Not applying for as many jobs as I tell people I am. Overthinking life, as opposed to living it much.

It’s just over a week since Andrea died, and I am relistening to reels they recorded over the years of their illness to remind myself of what it was that saved me. Superficially, it was their willingness to share their experience in a sincere manner, not for the clicks and views, that was what kept me nudging schedulers to get the needed treatment.

But I am still in utter awe of how their illness seemed to ground them and how it opened up a new creative wellspring within them that I could never find in myself. That they continued to create, stringing together words more moving than ever. The soft but strong fight against their disease, and ultimately the acceptance of its permanence and their new, time-limited reality. We are all time-limited, but I imagine there is a clarity in having a more solid idea of when that time will expire that helps give shape to living. If there is one for when the time limit is expanded, I’ve yet to find it.

I am living today

As someone I had

Not yet become yesterday

And tonight I will borrow

Only pieces of who I am today

To carry with me to tomorrow

Andrea Gibson Instagram post 8/26/21

Thank you, Andrea. May your memory be a blessing.

Jennifer Gross has written extensively in her head for years, with only the occasional sentence making it to paper or an electronic document. An endometrial cancer survivor of just over 3 years, she prefers to keep her hair short since it grew back in post-chemo, but wishes her eyelashes were as long as they used to be before treatment.