Kristen Rabe 

After a mistaken fall risk label, a patient with multiple myeloma showed that self-advocacy is essential for both quality care and emotional well-being.

After I was diagnosed with multiple myeloma, I was fortunate to have many outstanding professional caregivers. That included my oncologist at our local cancer center, the nurses who administered my weekly chemo, and the medical team at a larger hospital, two hours away, where I received my stem cell transplant. They were upbeat and encouraging and clearly explained complicated information about my treatment options.

But I had a negative experience with one caregiver — a physical therapist who assessed my condition prior to the stem cell transplant — that underscored the importance of self-advocacy. Her assessment was one of a few dozen tests required by insurance to ensure I was healthy enough for the expensive, risky procedure. Other tests considered my heart, lungs, kidneys, bone marrow as well as overall physical and cognitive health.

The November day I met with the physical therapist (PT) had been grueling. I’d driven from my home two hours away on icy highways and navigated my way to several different exams across the medical complex. The 5 p.m. PT appointment was last on the list, and I was running late due to delays throughout the day.

I expected the PT meeting to be a simple, check-the-box event. Every doctor I’d met with up to this point described my physical condition as excellent for a sixty-year-old woman. I walked five miles a day, jogged, biked, kayaked, gardened and did yoga and strength training. Doctors typically said that my physical strength would help me recover quickly. I expected to breeze right through the PT meeting.

The PT led me to a tiny conference room crowded with furniture. She had an ambitious agenda and warned that our appointment would take at least a full hour. She opened her laptop and launched what was clearly a structured questionnaire. I described my long list of physical activities, completed several cognitive exams, and balanced on each leg for ten seconds, as she requested. During a fifteen-minute timed walking exercise, I trudged up and down the hall in my clunky winter boots. She said I’d walked 1.2 miles at a nearly five-mile per hour pace, well above the norm.

But, at the end of the appointment, she said I was a fall risk and would be confined to my hospital bed for the full two-week hospitalization. I would have to summon a nurse anytime I needed to go to the bathroom. Her diagnosis confused me, but I was tired and certain I must have misheard her. She was eager to end the appointment, and I was eager to get home. When I examined her notes on my patient portal a few days later, I noticed that she’d cited gait and balance issues and listed “occasional yoga” as the only physical activity I’d reported.

I was stunned. Every other member of my oncology team had stressed the importance of staying active throughout treatment. The prospect of being confined to a hospital bed for two weeks seemed worse than the idea of the stem cell transplant itself.

I speculated about what the PT was thinking. She seemed young; maybe this was her first job. Maybe she was paranoid about liability or distracted because she had to stay late. Or maybe she really did see something concerning. But her discouraging diagnosis was completely at odds with my self-perception and with feedback from other caregivers.

I expressed my rage to my husband. In my darkest moment, I thought, “Fine, if they want me to be weak, I’ll show them just how weak I can be.” I was on the precipice of what psychologists would call learned helplessness. I was perilously close to giving up, to surrendering to what seemed like her inordinate power over my options.

Then I came to my senses. I knew I had to take an active role. I had to self-advocate. I recorded my frustration on the follow-up survey and talked with the PT’s supervisor and with my physician assistant. I was polite but direct about my feelings. They reluctantly retracted her fall risk assessment.

When I had the stem cell transplant a few months later, the nurses promptly identified me as a “fast tracker,” a highly independent patient who needed minimal direction. I did yoga in my room, rode a stationary bike in the workout room, and walked two miles a day in laps. The fall risk assessment was completely unfounded.

I learned an essential lesson about self-advocacy. As patients with cancer, we see so many professionals who make important judgments about our care. Some spend a lot of time with us, others just a few minutes. We must be vigilant and speak up if we don’t agree or aren’t comfortable with a recommendation. Being an active participant not only helps ensure appropriate medical care; it is also vital to our emotional self-care.

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Articles

A patient's experience with multiple myeloma treatment highlights the critical role of self-advocacy in healthcare. Despite having a supportive medical team, a negative encounter with a physical therapist led to an inaccurate fall risk assessment, contradicting the patient's active lifestyle and other caregivers' feedback. This experience underscored the importance of patients actively participating in their care, questioning decisions, and ensuring their voices are heard. Self-advocacy not only influences medical outcomes but also supports emotional well-being during challenging treatments.

I challenged a mistaken fall risk label before my transplant and proved that self-advocacy is crucial to both quality care and emotional well-being.

My Health, My Voice: Why Self-Advocacy Is Important

When I was diagnosed with cancer in August 2021, the news came from out of the blue. I’d had a few minor symptoms that preceding summer—red, itchy eyes; a rash; and mild fatigue. But, as one of my oncology nurses joked darkly a few months later, it was one of those worst-case scenarios where you visit the doctor to treat seasonal allergies only to find out you have cancer.

I met with Molly, my PCP, several times during the two weeks she investigated the cause of my mild anemia. She ultimately delivered the news to my husband and me in an evening phone call. I took notes on a scrap of newspaper, hoping the strange terminology would make sense later. The latest blood tests showed high levels of monoclonal proteins, kappa light chains and creatinine. I had multiple myeloma, a rare bone marrow cancer where plasma cells churn out rogue proteins that crowd out healthy blood cells and stress kidneys. Tears welled in my eyes. Words caught in my throat. My husband and I were devastated.

That call turned my life upside down. However, during that call, my PCP also offered several crucial pieces of advice that were essential to navigate this strange, new world. I’ve reflected many times on how well her words set the stage for the journey ahead.

First, she was utterly straightforward, but also guardedly optimistic: “This is a serious cancer, but we caught it early. I’m looking at this as a curable disease.” As I learned later from my oncologist, this last part wasn’t exactly accurate. Multiple myeloma can be managed, especially if caught early, but it is not curable. Treatment—which typically includes multiple rounds of chemotherapy followed by an autologous stem cell transplant—can push the cancer into remission for years, but it almost always comes back. When you’ve just received a shattering diagnosis, however, you’re searching for any glimmer of hope. Her words of encouragement were exactly what I needed in that moment.

Second, she offered some practical advice: “You need a communication plan. Once you tell your friends and family, their concerns can completely overtake your life. They’ll have the best intentions, but you’ll end up spending all your time answering questions about your cancer.” I’d just retired from a 30-year career in corporate communications, so her advice resonated. I told only a handful of my closest friends, and I asked my mother to be the point-of-contact for her large extended family and my husband to do the same with his family. I drafted detailed updates every three weeks (or so) and promised that we’dnotify them if there were new developments. I did not post the news on my Facebook page. (I didn’t need 400-something acquaintances peppering me with questions, and I still needed time to process the news myself.) That elementary, but important, strategy put me in control of communication, rather than being engulfed with well-meaning phone calls, emails, and texts. 

Third, my PCP’s response was incisive when my stunned husband asked, almost indignantly, “But it seems impossible. How can someone so healthy get cancer?” Admittedly, I was thinking the same thing. I hiked, kayaked, biked, ate a plant-based diet, and had longevity on both sides of my family. I’d envisioned living well into my 90s. My PCP’s answer was simple: “Even strong, healthy people can get cancer.” Multiple myeloma is caused by a random gene mutation, not by lifestyle and it is not hereditary. Sometimes, cancer just happens. It’s no one’s fault. Her simple words relieved me of guilt—the last thing a new cancer patient needs—and it kept the focus on the disease. Yes, being relatively healthy helped me rebound quickly from some really difficult treatments, but I didn’t bear the burden for fighting the disease. It wasn’t up to me to “beat” cancer. I had a whole community of doctors and specialists to help me.

I’ve been fortunate. I have completed my treatment, including the stem cell transplant, and I am in full remission. I hope it lasts for years, if not decades. I don’t know what the future holds, but I try to focus on the moment—a golden slant of sunlight, the gentle ache while paddling my kayak on the bay, a loving touch from my husband. And I am thankful for the wise, thoughtful words from my PCP that helped me approach this disease with courage and hope.

Kristen Rabe

My Health, My Voice: Why Self-Advocacy Is Important

Even Healthy People Get Cancer

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