About a year and a half ago, as we entered the third month of the pandemic, in the weeks after President Donald Trump suggested injecting bleach to cure COVID-19, it became frighteningly clear that the U.S. would fail to contain the virus.
It was at this moment that my mother was diagnosed with bone marrow cancer. It was an astonishing act of cellular solidarity with my father, who had been struggling with the same cancer, multiple myeloma, for years. I heard her matter-of-fact voice over the phone reveal her diagnosis, and the first thing I blurted out was, “Are you joking?” The second thing I said to her was, “Way to pull a Gandhari, Mom.”
In the classic Hindu epic The Mahabharata, Princess Gandhari’s marriage was arranged to Dhrithrashtra, the blind prince of the Kuru kingdom. Like many a princess before her, she was used as a pawn in a geopolitical power play between warring kingdoms. Upon learning that she was destined to be tied to a sightless husband, Gandhari immediately covered her eyes with a blindfold, one she never removed for the rest of her days.
Heralded as the ultimate act of love, loyalty and sacrifice, Gandhari has been held up in our culture as a symbol of wifely devotion, shrouding herself in eternal darkness in solidarity with her husband. Growing up, I thought this was the most ludicrous thing I could imagine any woman doing, and it filled me with anger and loathing. And here was my mother, my sari-clad feminist hero, pulling an inadvertent Gandhari.
Our Mother’s Day 2020 was spent looking up at my Mom’s sweet face, framed by a screened second story window, next to my father, while my husband and my nephews sat 50 feet away on camping chairs on the sidewalk eating thin-crust pizza in parallel. We dared not hug, much less breathe, around these septuagenarians with their blood cancers for fear of felling them instantly. I spent my days on three-way calls with my mother and medical staff, readying ourselves for what chemotherapy during a pandemic would look like.
The day before her chemotherapy started, our call with the specialty pharmacist began with, “Are you familiar with the Medicare donut hole? It is a coverage gap and you fall into it.” She calmly proceeded to drop a bomb on us and relayed that in order to start chemotherapy, Mom’s first cycle would cost $2,541.44. One cycle. Two weeks. 14 capsules. This, for a retired 75-year-old who had worked her entire life and paid into the system. Our consolation prize was a list of phone numbers to various foundations that might help cover these charges. Mom was supposed to start chemotherapy the next morning.
A few months later, Dad’s multiple myeloma, which had been in remission, became more active and his numbers climbed to the point of no return. We were chemo catapulted once more, and had no choice but to déjà vu our way forward, conversation with the specialty pharmacist included — same cancer, same donut hole, different patient. Again, we were offered 800 numbers to foundations to try for grants to cover the $2,541.44 for his 14 chemotherapy pills.
The grim running joke during this time period was “some people get couples massages, my parents get couples chemo.” Mom and Dad started weekly Wednesday couples chemo, to the dismay and delight of the nurses on the infusion floor. They drove each other and refused help, terrified that they would pick up COVID from any one of their clinic or hospital visits and pass it on to us. Being so immune-suppressed by the chemotherapy for their cancers, they were in the highest-risk category for hospitalization and death by COVID if they ever caught it, so they lived in a bubble of two. They were in this together, alone.
COVID tests were still being strictly rationed at this time and Mom ended up in the ER with a cough and fever of 100.3 F and blood tests that showed she had low white cells, the very cells that help fight infections. Though this could be very dangerous to her, she was informed that she didn’t qualify for a COVID test due to the cutoff for tests being a fever of 100.4 F.
Now is the point that I tell you I am a doctor and that my parents usually get first-class care because their doctor daughter is at their bedside whenever they are ill. There is no ER doctor in the world who would look a colleague in the face and deny their mother ― a cancer patient on chemo ― a COVID test because of a 0.1 degree differential. But the pandemic relegated me to pacing around the hospital parking lot at midnight, and any advantage that the privilege of my medical degree conferred had disappeared.
Though I very firmly and explicitly instructed Mom to call me once the doctor arrived, he dismissed that plan and proceeded to examine and subsequently discharge her.
When she was released into the parking lot at 2 a.m., I let her have it. It wasn’t my finest moment. This past year and half has been one long daisy chain of my non-finest moments, all in the service of keeping my parents alive.
Unsurprisingly, less than a week later, she was back in the ER with a worsening cough, higher fever and lower white count and this time I made my mother keep me on speaker phone in her purse for the entirety of the four-hour intake and evaluation. I piped up from inside the purse pocket and spoke directly to the ER doctor, who was clearly chagrined that her colleague had not run a rapid COVID test earlier in the week. Though her infection did not end up being COVID, she had a six-day hospital stay where she experienced poor care that would have never happened had her medical advocate and protector been by her side. Still, it was even hard to be mad at my hospital colleagues; I knew the hell they were going through.
A month later, it was my father who was hospitalized. We did the two ER trip déjà vu. In between, I made the 400-mile drive to their house and, once again, I could not protect my dad from inferior care. Had I been stationed at the head of his bed, as I usually am, they would have ordered the needed CT scan, the blood cultures and the infectious disease consult on Day 1, and his hospitalization time would have been cut in half. Instead, we spent countless days waving our phone lights to him from the particular spot in the hospital parking lot where he could see us from his fourth floor room, looking frail in his hospital gown, hand clutched to his IV pole. I spent the first night waiting for the internist to call me back, as she promised my father she would. I fell asleep with the phone next to my pillow. She never called.
After that, I begged a nurse to place a sign on the wall behind Dad’s bed with my phone number on it and with explicit instructions to call me if any clinician came into the room. Communication improved, and though Dad did not have COVID and his infection did get better, he was much worse for the wear. Dad walked into that hospital with a firm step and shuffled out nine days later a fall risk.
Through the challenges we persisted, with precautions and isolation and a million little measures to try to keep them safe.
When my husband and I finally decided to risk driving my parents to chemotherapy, we tried our best to do it safely. We built a wood-framed divider and used thick plastic shower curtains and an ungodly amount of duct tape to separate the front of our van from the back of it. We would seal off the vents, leave windows open, stay masked and ferry them to and fro.
The joke during this time was that we were just trying to get them to survive COVID so they could have the luxury of dying of their cancer. We were able to keep them alive and COVID-free all the way into the vaccine promised land. And though their wait was longer than it should have been, they finally got their two doses of mRNA vaccines.
We thought we would just have to wait till everyone else got vaccinated, and once we reached herd immunity, my parents could experience some semblance of normalcy again, despite their cancers. We just need to wait a little bit longer, we consoled ourselves, and then our loved ones from all over could come bring hugs and much-needed reunions could finally happen. Of course everyone will line up to get shots, to protect one another, to help the vulnerable like my parents, to keep safe the innocent kids who could not yet get their vaccines, we reasoned.
Home for Mom and Dad is Huntington Beach, California, a place that had become a flashpoint of the highly politicized confrontations around basic public health measures. The we-are-all-in-this-together proclamations of the early pandemic manifested in some quarters into a toxic individualism of a live-and-let-die, survival of the fittest, anti-mask and anti-vax credo.
Won’t you be my neighbor became don’t you be my neighbor.
I shouted their unmasked neighbor off their porch, screamed at an aunt over FaceTime to get out of their house, got in the faces of two firemen in the clinic waiting room whose masks hung beneath their chins.
It has been a long year and a half.
And the whole time, I have wondered, what is the point of our system if not to protect the weakest amongst us? Just because children die at lower rates than adults, when did it become okay for any little kids to die in the first place? If being old, overweight, diabetic, cancerous or immune-suppressed deems you somehow more expendable, if those risk factors induce sighs of relief when people learn of your death, what does it say about the extremely sick society that we have created?
Navigating our health care system from the perspective of a daughter and doctor has made it abundantly clear that profit-based health systems that tend to incentivize restricting care — and at any moment can surprise you with bank-breaking donut holes — prioritize neither health nor care. Patients are sick of it and sick from it. When we, as healthcare workers, are able to do right by our patients, it is usually despite the system, not because of iAnd if the sheer numbers of health care workers who have lost their lives during the pandemic is any indication, this system doesn’t serve those on the frontlines either. Chronic understaffing and corner-cutting have become a cornerstone, not an outlier, of our health care system.
When news broke that Colin Powell, who suffered from multiple myeloma like my parents, died of COVID, my heart sank. I knew that his vaccinated status would be used to undermine vaccines, as if his death proved that vaccines are ineffective and that people should not bother getting them. In fact, it proves just the opposite: People need to get vaccinated to protect the most vulnerable in our society. And the longer COVID is allowed to circulate freely and remain active in our communities, it is the most vulnerable of the vaccinated who will fall.
This is what happened with Colin Powell, and this is what could happen to my Mom and Dad at any moment, because when you have a cancer of the very cells that make antibodies to protect against the virus, there is no guarantee that you made many ― or any, for that matter. So it is up to your community to protect you, to cradle you in a cocoon of herd immunity by getting vaccinated.
All I can do is continue trying to keep my parents safe from COVID because I don’t want them to share the same fate as Colin Powell.
I want them to have the luxury of dying of their cancer instead of dying of COVID.
Dipti S. Barot is a primary care doctor and freelance writer in the San Francisco Bay Area.