In September of 2019, my 76-year-old mother received a diagnosis of a rare form of stage IV adenocarcinoma. All the doctors could say with certainty was that it always would come back within 3 months to a year, despite treatments. We spent October through December of 2019 loading up my mother’s body with the chemotherapy drug known as cisplatin. She additionally received 6 weeks of radiation to the pelvic area of her body. It was as if her skin had been boiled. Her reactions to the drugs, the radiation, the steroids, all led to what I considered a barely survivable treatment regimen… and she was already in poor health before we started all this.

By January, when all of it was over and she was sleeping nearly all day, every day we were told that it would be 3 months until she could undergo a PET scan to see if the treatments worked. However, due to the social distancing ramifications of the coronavirus, Mom’s PET scan in April of 2020 was canceled and pushed back for months. We floated. We drifted in the not-knowing-of-it-all. Was cancer still spreading through her body “like feathers in the wind”, as Mom liked to say? We had no information. We locked down the house and tried to focus on her recovery from the chemorad, trapped inside from the coronavirus, unable to get any definitive answers.

Then her back just went out one day. That day stretched into eight days. She was barely able to move. She was in agonizing pain. Gasping for breath nearly every 15 minutes from the spasms. Dad and I could barely get her out of bed in order for her to go to the bathroom. Because of Covid-19 restrictions on “non-essential” treatments, local doctors would not see her for an MRI scan or x-ray. Finally, Mom’s pain was so bad that her general practitioner, Dr. Dunn*, was able to move her into the “essential” category, and scans were ordered. We figured that it would show a bulging disc, perhaps from spending too much time laid up in bed and in weird angles. We were shocked when the doctor called and requested that Mom should get everyone in the room so that we could hear the update. Dr. Dunn solemnly informed us that the scan and report showed indications of extensive metastatic cancer in her spine. We were incredulous at the news. It didn’t seem possible. How can vulvar cancer move into the spine? Were they even looking at the right person’s scans?

We were immediately scheduled for an emergency PET scan at our primary cancer clinic. They had literally just been allowed to reopen their scanner as coronavirus restrictions were eased. However, Mom still had to enter the hospital alone and unattended. I slept, while waiting in our minivan, on Level 2 of the parking deck nearby, too exhausted to even wonder what the PET scan might say. Afterward, we drove home, stumbled into the house from the journey, and waited for the phone call with the results.

The next day my father, my mom, and I were in my parent’s bedroom getting ready for the call. Dad was doing what Dad always does during times of stress: he was fixing something. As this critical call began, Dad was filling the room with noise, unpacking crinkly plastic bags containing new curtains. He was anxiously shifting furniture. He was lining up tools on the bed. He had suddenly decided that now, yes now, was the time to hang new curtains in their bedroom. The phone rang, Mom answered it, hit the speakerphone button and we battled to hear what was being said over the sound of Dad’s repair therapy project. This continued for the first few minutes before Mom finally shut him down and made him sit still. He immediately laid down as if he was asleep the whole time, eyes closed.

We were told that even after three months of aggressive chemo and radiation, Mom’s cancer had indeed spread to the spine. Dr. Wright* was cheerful, as opposed to Dr. Dunn (Mom’s general practitioner) last week, who was mournful. Dunn had the right tone in my opinion. She had sounded like it was very close to the end of mom’s cancer fight. And let’s be clear, this diagnosis is a disaster. This diagnosis does mark the near end. However, on the call with Dr. Wright, the tone was quite different. It was relayed that she had cancer involvement in her spine and had 3 compression fractures. She had bulging discs from the compression fractures and a lymph node that also looked cancerous. This is usually the part when the band packs up and goes home and I was waiting for Dr. Wright to say so.

This phone call itself, though felt—for lack of a better descriptor—just stupid. I loved Dr. Wright’s enthusiasm. And I don’t want to say anything negative about her because her boundless positivity could power a General Electric warehouse. But it was also just frustratingly dumb how much she assiduously avoided all worst-case scenario talk. She didn’t want to go there – ever. So you could never ever get a straight answer on how bad things could get or more importantly how bad things actually were. In our experience with Mom’s stage IV cancer, the majority of docs do this. Dr. Wright has just been the brightest and floweriest example I have seen so far. Nothing gets her down, but that’s probably because she isn’t the one with cancer.

Instead of talking about reality and making Mom as comfortable as possible in her remaining time, Dr. Wright talked about treatment plans, radiation, chemo regimens, and what we could do to stop the growth. She literally said, “the news is good, it’s not as bad as I thought it would be.” Not as bad as you thought? By that, you must mean that you heard Mom was already dead and you’re glad she recovered? Can you tell us how it could be any worse?

Mom surprised me by asking a question about how her quality of life would be affected by all the treatments being suggested by the cheery doctor. Her perspective is usually similar to Dr. Wright’s, with a willingness to believe that any kind of suffering from chemotherapy and radiation is worth her time. Dr. Wright walked this strange tightrope in her response: “Well sure, you always want to evaluate if any treatment is reducing your quality of life or if it’s wiser to not do the treatment.”

Translation for that, in direct terms: it may be wiser to skip treatment and die naturally. Metastatic spine cancer isn’t ever good news. Why was Dr. Wright insistent on putting whipped cream and cherries and hot fudge on top of Mom’s spine cancer? If not doing the treatment was also an option, then she was admitting that the prognosis was really freaking grim. But not once in this 17-minute-phone call did she sound grim. The doctor never discussed prognosis, death, or hospice as possibilities. She never mentioned anything that was negative about Mom’s experience as it currently stood. I wanted to ask Dr. Wright if we should just deliver flowers to one another, say “Yay I love spring!!!” and call it a day…

This whole path that Dr. Wright laid out before us felt like an absurd extension of Mom’s poor quality of life with even more side effects and more misery with more false hopes trumped up by doctors. I have worked in the medical field. One does not have to be a doctor though to know that my mom’s time on earth is now to be measured in months and not years. But no doctor will tell her this.

What do I want? I want a doctor to look Mom in the eye and say this one thing: “It’s okay to stop fighting. It’s okay to stop feeling sick from treatments that poison your body. It’s okay to not suffer from pain any longer. Seventy-six years was a damn fine run. No matter what we do, your rare type of cancer is always going to return quickly and we have no known cures. It’s okay to call hospice, and prepare yourself compassionately for the end of your time here on earth.” Because anything other than that is just a continuation of Mom’s suffering and a manifestation of Western medicine’s fear of death.

*Provider names have been changed for privacy.

Share This: