Originally published in "Discussions with Don S. Dizon" on The Oncologist.
Among the best parts of social media are the connections I have made that have since transitioned to real-life friendships, both inside and outside of oncology. One of my earliest connections on Twitter was with Anne Marie Mercurio (@chemobrainfog). I still remember discovering Twitter and Anne Marie, and thinking how she really puts it all out there. “I could never do that,” I remember thinking. Her tweets were raw—about being treated for breast cancer, her role as a mom, her relationship with her own mother, and her passion to advocate for research and going beyond the pink ribbon. Fast forward years later and Anne Marie and I have not only met in person, we work together through SWOG Cancer Research Network, and I have always loved coming to meetings twice a year, knowing that she will be there for our traditional dinners.
With COVID-19 has come transitions to the virtual world, including cancellations of planned travel to SWOG. No San Francisco and, more recently, no Chicago. Twitter has become a lifeline more than ever, and I’ve been able to stay in touch with so many, including Anne Marie. Through Twitter I’ve followed her personal journey on the other side of breast cancer—as a family member of one undergoing treatment for metastatic disease, her mom. I’ve been anxious reading her posts, cried with her on others, and more recently, experienced profound sadness when she told all of us her mom, Maryann, had died.
It’s never easy being in oncology—whether as a doctor, a nurse, or an advocate—when it comes to someone you love. I struggled with it personally, with my aunt who had lung cancer, and a cousin who was being treated for myeloma. I knew “stuff” but I didn’t want to play the part of the doctor. I wanted to be there as family. It sparked a conversation with Anne Marie about this balancing act.
When I asked Anne Marie to write this with me, I had expressed how I continued to be triggered by the language of oncology, especially since I continue to review data where patients are referred to as “breast cancer patients” or even “screen failures.” I wondered if I was alone?
Anne Marie: I believe that all patients, regardless of their disease, are people, and everyone in the healthcare setting should be very mindful of that. We are, all of us, people first. Some of us are living with a disease, others are treating a person with a disease. I understand it’s wordy but we must find a better way to express this in ways that are respectful of the whole person. We are not our disease but the sum total of so much more. Within the clinical trial realm, the term “screen failures” is highly upsetting. My mom was recently deemed a “screen failure” and it was very disheartening. I would prefer wording along the lines of “did not meet eligibility criteria.” It’s more respectful of every person who wants to and makes every attempt to step up to participate in a clinical trial. If the person is found to be ineligible after the screening process, they won’t be made to feel they failed. This entire situation adds to the “patient as a subject” mentality rather than the person as a partner contributing to research.
On a highly personal note, I recall taking great offense recently when I got a call from the hospital where my mom was admitted and was being cared for before she died. After confirming my identity, the resident on the phone stated, “The patient is being discharged this afternoon.” I remember asking her to stop; to consider her phrasing for a second, and to remember that every patient is someone’s loved one. In this case, I made clear she knew she was speaking about my mom, not “the patient.” I think I ended my mini-rant with that famous hashtag I saw once in your tweets. I told her, “Words matter.”
I wondered also how Anne Marie’s own experiences with breast cancer informed her ability to be there for her mom. I know it was hard for me, being a doctor, when the one being treated was my best friend.
Anne Marie: My mom had a rough time. She had been living with mostly stable metastatic breast cancer for 7.5 years. Her cancer progressed in May and when the next option on the table was a chemotherapy agent that has been in use since 1996, I had the opportunity to speak to her (our) oncologist privately. Because of COVID-19 protocols, we could not all get on a virtual visit to discuss this in proper detail with all parties in the conversation at the same time.
I fully understood where she was at each moment in the course of her disease; it was both a blessing and a curse. It helped to have a deeper understanding because of my advocacy involvement and because of my close relationships with so many in the metastatic breast cancer community. It hurt because I understood where this goes when we hit the rabbit hole of treatments barely working and the attempt to try a different cytotoxic agent. Because of the many past experiences I’ve had with some who were very close friends, I respected her wishes to continue treatment, even when I thought, earlier on, that we would be better off focusing on making certain she’s living and enjoying her best life.
Having completed my treatment for early-stage breast cancer in 2007 and knowing that my mom was also “successfully” treated for two separate early-stage primary breast cancer diagnoses, I’d be lying if I said I’m not worried about what the future holds for me. Late-onset metastatic disease frightens me, but I do my best to live in each moment and try not to dwell on the what ifs despite knowing “what if” is precisely what happened to my mom. It’s in my face so that can be difficult to navigate at times.
You had tweeted about the discussions about clinical trials your mom had had with her care team. Looking back on it, can you tell me what you think they did right? Where do we still need to go?
Anne Marie: Mom’s oncologist was excellent. When it was found that the first chemotherapy was not working, the oncologist reached out to the team to find clinical trials for which she might fit the eligibility criteria. The research team identified two trials for which she would be eligible. The oncologist explained both to her. He also explained that the availability of a trial could dwindle with each new line of treatment in a way that she could understand. After much discussion among the three of us, she agreed the clinical trial was the next best option and she signed the consent form.
I took exception when the trial agent was described as an “exciting new treatment” because I knew that was introducing bias into my mom’s decision. My experiences in the world of clinical research have made me very aware that no one will know if this is an exciting new treatment until the trial is concluded, the data analyzed, peer-reviewed, and published, and ultimately, approved for use. That bothered me, but I chose my words with my mom very carefully when we were discussing her participation in the trial after leaving the doctor’s office. I was walking that fine line between hope and reality as a daughter rather than as an advocate.
A day later, the oncologist had to call me to tell me she didn’t meet the eligibility criteria. This was solely because of the way the trial would be measuring disease progression. That bothered me because it was a trial being conducted within the facility where she was being treated. Before it was even offered as an option, I think the research team could have easily looked at the scans the same way they looked at the clinical history. It’s in the same set of records they looked at to determine she met basic criteria for eligibility. She was very hopeful about the trial and then very disappointed to learn she couldn’t be a trial volunteer. That could have been avoided had someone taken just one extra moment to glance at the scans or even the written report.
When Anne Marie tweeted that her mom had died, I couldn’t do anything more than tweet back my condolences. It saddened me that in this year we find ourselves in, I have not been able to see so many friends and colleagues, and in this particular case, missed an opportunity to hold her hand, offer my support personally, over a nice meal, as I know we would have done. I also knew how much she struggled during COVID-19, especially during her mom’s hospitalization. She wrote to me about her experiences as well:
Anne Marie: The pandemic has caused significant disruptions in communication. In May, when we learned of her disease progression, there was only a discussion between my mom and the oncologist. Normally, I would have been in the office discussing options, as had always been the case when a treatment change was warranted. Instead, it was a phone call between the two of them. She relied on me to ask questions and gather information. In this case, she made the doctor spell the name of the drug they would be administering. That was the only information I had.
On the day of treatment, because of COVID-19 protocols, I was not allowed to enter the facility. I waited in the parking lot for her. After she had a bad reaction to the first infusion, I spoke to the doctor on the phone. Again, it was just two of us, this time me and the doctor, without Mom. She needed to be treated in the triage area at the cancer center several times since May and the first couple of times that happened, she was taken in without a family member present. Her visits with her oncologist took place via telehealth. They would bring her into a room in the facility and she would speak to him on a screen. We had to rely on her calling me on her cell phone using the speaker so I could join the conversation.
The communication is disjointed as we all learn to navigate safety protocols due to the pandemic. Frequently, I’m piecing together information and in many ways, I’m fortunate that I have a higher level of understanding so that I can cobble together the information. I worry about those who don’t have someone in their corner, with loved ones not fully understanding what’s going on and a gap in communication. I understand we all, to steal someone else’s line, jumped off a cliff and are building the parachute on the way down but we must do better. I was able to get permission to join her for an in-person visit with the oncologist less than a month ago. It was the first time she saw him in a couple of months.
I would think that dealing with all of this might heighten the dilemma of being a caregiver and an advocate. It’s hard enough to put what you know to the side in an in-person visit, but when it’s being done remotely or even disjointedly due to COVID-19, I can see it being impossible.
Anne Marie: Well, I was frustrated, especially because I saw different specialties concentrating only on their area of expertise, as if in a vacuum. They were not looking at my mom as a whole person with a number of issues that must be addressed. Instead of a care-helper, which I would call myself in the past, I found out what it was to be a caregiver and I can state without hesitation, I’d much rather be the one in the gown. It was exhausting to keep up with everything—as if I were two persons living in one body. When I was visiting with mom, I was her daughter, and my concerns were solely concentrated on her comfort and safety. When I was not with her, I found myself compartmentalizing my daughter role and putting my advocate hat on. Still, my emotions clouded my ability to obtain and retain all of the information I needed, especially when I spoke with anyone on the treatment team.
Anne Marie illustrates for me why I do what I do. When I decided to become an oncologist, it was because I wanted to help improve the survival of those diagnosed. While that remains the goal, I’ve realized just how much more there is to doing this work because we touch lives not only of those we are seeking to treat, but their families and friends and loved ones, and we are also changed—and those changes are never more evident than when cancer enters our own homes, lives, and communities. In the challenge of caring for someone with cancer we rediscover our own vulnerabilities as human beings, and that’s so true for oncologists. Pandemic or not, health care is a human endeavor.
Note: Maryann’s experience receiving cancer care during the COVID-19 pandemic was profiled by a local news affiliate earlier this year.