“There’s too much blood to really see anything,” the doctor said. “It’s probably BV.” My sister Becky was lying on a clinic table with a speculum inside her. It was September of 2015.
Shortly before all this, she’d called me: “Something’s wrong. I’m spotting a lot.” I told her that was happening to me sometimes too. We were getting older; she was 33, I was 32. It didn’t seem unusual to have changes in your cycle by now.
“No,” she said. “I’m spotting, like, a lot.”
After every STI test came back negative, the doctor with the speculum prescribed antibiotics. For about a month Becky took these, waiting for the symptoms to clear. They did not. Instead, the bleeding and the pain increased — cramps and shooting pains, the blood heavy and clotted, its odor metallic and rotten, like an open wound. Finally, one more doctor looked and saw a large, visible lesion on her cervix. It had not grown there since yesterday. He sent her for a biopsy immediately, though he didn’t need one to know what he was looking at.
“There’s so much blood here,” she recounted him saying in alarm. “How could anyone have missed this?”
But they had.
Becky was diagnosed with stage IIB cervical cancer in late November 2015. Her first fear was that people would think that she had neglected to get check-ups and Pap smears — this cancer was supposed to be detectable via those methods. But she had gotten them every year like she was supposed to. My sister was extremely invested in her health and fitness. She never seemed to get sick.
Becky went through her first round of radiation and chemo that winter. Everyone close to her believed that she would beat it, that she was young and strong and had a will to live so robust that that’s exactly what she would do: live. We got to know the hospital very well — the waiting rooms, the doctors’ offices, the old magazines, the posters on the wall, the coffee, the parking lots. We read all the pamphlets and websites about dealing with cancer and the after-effects of chemo and radiation. We sat with Becky while she waited to go into the radiation room again and again for treatment that would kill the cancer but destroy the female organs around it, as if cancer could have spite. She bore it bravely. She had no choice.
It’s worth mentioning that a year before her diagnosis, in 2014, Becky had a Pap and an ultrasound under the care of her family doctor, after an abnormal Pap smear. This doctor considered both a waste of time, and said she was fine. In 2015 that doctor’s medical license was suspended. Becky was never able to find out why. She tried to access the records of her 2014 ultrasound after her diagnosis, and they would not release them to her, and never would. There was no accountability, just a door that shut in her face.
In the late spring of 2016, her treatment had ended. The scans were clear. We exhaled, even as we memorized statistics about recurrence. The odds were good that we could have maybe two, maybe five, maybe seven years before the cancer showed itself again. And who knew what advancements might come by then?
Instead, that summer, Becky felt a pain in her left leg.
“Does this leg look swollen?” she would ask. It did: At first it was hard to tell, but you could compare one knee and the other and see a clear difference. Later, the same was true for her ankles. Eventually one leg grew to twice the size of the other.
But the swelling could have been caused by a number of things. We all hoped it was just a temporary side effect of the radiation, inflammation that would go down after a while. Becky ran through all the possibilities in her mind a million times. But she could not ignore what her body was telling her.
Back in a doctor’s office in mid-July, she laid out everything she was feeling, and everything she knew. Becky had a kinesiology degree. She never went to an appointment unprepared. She wrote everything down, she asked lots of questions.
That day, she met with a radiologist. She was not due for a scan, and she was not given one. Instead, she received the vague assurance that they were going to “keep an eye” on her. The doctor said there was “nothing suspicious,” and her regular oncologists refused to see her because they deemed it unnecessary. A few months later she was able to see her chart. Of that visit, someone had written: “Rebecca continues to be paranoid.”
It’s a small note. But it is stuck into the memory of her treatment like a wedge that won’t allow a gap to close. This was not from a doctor who tossed her aside, but one who was invested in her care, had been there through her initial radiation. There’s a whiff of old “female hysteria” to it, with more than a hint of dismissal. Becky was scared, and perhaps that was the main takeaway that day. But she was also right.
Four weeks later, the pain was so severe we rushed her to the hospital, where she got an emergency CT scan. Her boyfriend Ryan remembers hoping that the problem was a blood clot, as if anyone would hope for that. But the pain and swelling was coming from a lymph node now so inflamed it was cutting off the circulation to that leg. Soon, it was confirmed: The cancer had metastasized.
Becky would live for only 20 more months after this. If you’ve never seen someone die from cancer up close, how can I possibly put it into words? I don’t know. The pain she endured broke everyone who witnessed it, because we were all so helpless. The indignities she suffered were countless and cruel. It is hard to think of it, and impossible to not think about it. Images of our sister from that time wake me up at night and suck the air out of my lungs because they come unbidden and vivid, like they’re happening all over again.
My sister was always the most beautiful and effervescent person in whatever room she was in, but cancer had spindled her body down to nothing. A touch on her leg was agony. The organs around the cancer became obstructed and began to fail. One of us might sit at the edge of her bed holding her hand while she screamed in unbearable pain and another one of us went running down the hall for a nurse or a doctor, anyone, anyone. A tumor grew out of the side of her neck. She was small to begin with, and by the end, her topography was only the sharp relief of small bones under sunken skin.
Cancer stole so much from her. Her past, because her life would be overshadowed by the way it ended. Her present, because for the two and a half years she had it, there was never a moment’s peace, nor comfort. Most of all, her future, which she will never get. The career she had in mind. The work left unfinished.
On Christmas Day in 2017, Ryan gave her a ring. In the spring of 2018, we brought her wedding dresses to try on because she had been wishing for a wedding. She wept at the sight of her emaciated form in the mirror, at the beautiful garments that hung dismally off of her. All that we could ever offer in the face of any of this was love, and that couldn’t fix it. She never got married.
“I don’t want people to talk like I’m already gone,” she said in April 2018, shortly after her 36th birthday, which everyone understood would be her last. We threw her a small party, with cake and hats, hoping it would hit the right note and make her happy instead of sad. “I’m still here fighting,” she said. A short while later she fell into a coma from which she never woke up. It lasted 11 days. She died on May 14, 2018.
In our sister Becky, we buried a spirit that had never given up. It was the same spirit that used to light up every room she ever entered, even more than the beautiful girl did. She wanted to live.
If Becky had lived, she wanted to switch careers and become an advocate for cancer patients. She would have been great at it. There was never anyone as organized as she was when it came to understanding her treatment options, preparing questions for her doctors, and navigating the multiple specialists in multiple disciplines in multiple cities. Since she can’t do that, I am here now as a poor substitute to share her message: You know your body. You know when something is wrong. Trust yourself. We are all afraid of falling through the cracks. And we ought to be, because it happens.
Becky was well educated and healthy. She was also Canadian, which means she was able to access the opinions of different doctors and take on treatment without the financial strain that often crushes those without access to such services in the U.S. And even then, she was financially devastated after years of treatment and no work.
The energy she had to spend advocating and fighting for her own cause, when she was already so sick and on so many powerful drugs, juggling endless appointments and deciphering myriad treatment options, the effort she made trying to be heard, was more than anyone should be asked to take on. She learned to be her own best advocate, but the time it took to learn that came at the highest price: time.
Becky had many good doctors. She had incredible, caring nurses. These are people we cannot thank enough. But how often do I think of the ones who turned her away, who didn’t believe her? How crucial were those months of missed treatments, how much could be different now? I don’t know the answer. But I believe, in my heart, that it did not have to turn out the way it did.
We just passed the four-month anniversary of her death. It was a loss we all saw coming, but grief exploded through us anyway. It is a powerful, relentless thing. It is wrong to wake up in a world where she no longer exists. It is wrong to watch our mother bend over her grave, our father talk about her in the past tense. It is wrong that we were four sisters, and now we are three. Her death is a hole in our bodies because a piece of us is gone. We are sad, heartbroken, and angry that she is gone — yes, angry too, because there was more that could have been done, and because we are not alone.
In the wake of Becky’s death, I opened up to social media about her, and received countless stories from people and loved ones of those who suffered needlessly when they went to the doctor and were not taken seriously. Years spent in pain written off as nothing. Glaring problems completely overlooked, especially in the bodies of women. Becky was a woman, but she was also white, cisgender, and without disabilities. How much more is this problem a fact of life for non-binary people, trans people, people of color, people with disabilities? It’s humbling to hear from so many with stories of their own, and distressing to consider the stories we haven’t heard yet.
But what good are stories like these, if nothing is done about them? If no one is held accountable? I wish that I could go back in time to those appointments where they dismissed her pain and storm them with a righteous fury, but I can’t, and she’s gone, and in the clinic next door there might be someone else being gaslit into thinking their physical pain is all in their head.
Becky wanted to help change things if she survived. The best we can do now is to tell her story, and hope it makes a difference. Hope that the narratives pile up until they can’t be ignored anymore. Becky wanted to make a difference. She did not want anyone to go through what she went through, ever again.