Author + information
- Susan R. Strong, MA∗ ()
- ↵∗Address for correspondence:
Susan R. Strong, MA, Heart Valve Voice US, 1700 K Street, NW, Suite 740, Washington, DC 200006.
When I met Darryl in 2012, I was in the best shape of my life. Our first year together was joyful and active: we enjoyed mountain hikes and long talks, with the crunch of graveled trail underfoot and an expanse of azure sky overhead; summer concerts under a canopy of stars at the Red Rocks amphitheater; and shared laughter and conversation over wine and gourmet dinners with friends. At 46, I felt certain that the second half of my life held a joy that my younger self had only hoped for.
One short year later, at a routine appointment, my primary care physician said, “Your murmur is changing. Let’s send you to a cardiologist.” The life-altering chain of events that followed left me blind-sided.
A few weeks later, an echocardiogram revealed severe aortic stenosis. The cardiologist said I would need valve replacement within the next 6 months. He explained that the stenosis was a result of high-dose (36Gy) mantle radiation I had received in 1983—when at 17 years old, I had been diagnosed with Hodgkin lymphoma.
What?? My experience of cancer as a teenager had become a distant memory.… The staging laparotomy and splenectomy, lymphangiogram, bone marrow biopsy, MOPP chemotherapy, radiation…the impact of that brutal year seemed distant and unreal, like a nightmare that was difficult to recall after the morning light and a cup of coffee.
Stunned, I sat on a metal bench in front of the hospital, waiting for the valet to retrieve my car. I called Darryl to tell him the shocking news about my heart valve. I braced myself and said stoically, “Now’s your opportunity to move on, because things are about to get real.”
How could cancer be impacting me now, decades after diagnosis? After all, at age 22, I had reached the 5-year survival milestone. I was released from my oncologist’s care and told to go live my life.
I was determined to live (and pushed down the simmering fear that I wouldn’t). Afraid of not having a future, I rushed into adulthood. Completing college in 7 semesters, I married at 21, had a baby at 24, started grad school at 25, continuing on this trajectory until my life unraveled in my early 40s and my 24-year marriage ended.
No medical provider suggested the need for any special follow-up. I intuitively sensed that a healthy lifestyle was important — I exercised, rarely drank, never smoked, and maintained a normal body weight. The only late effect I experienced happened within the first year of treatment: hypothyroidism. That seemed like more of an inconvenience that I accepted. Along with secondary infertility, premature menopause, and constant neck pain caused by degenerative thoracic disc disease (within the radiation field) and muscular pain that I now understand to be radiation fibrosis. None were life-threatening. Overall, I had experienced relatively good health.
On November 12, 2014, just after my 49th birthday, I had an aortic valve replacement via transcatheter aortic valve replacement (TAVR). The 6 months to a new valve my cardiologist had predicted in 2013 had stretched into 18 months; my procedure was delayed while waiting for FDA approval of a second-generation valve. The night before the TAVR procedure, I lay awake wondering if I would wake up after surgery, a fear creeping over me like a shadow in the darkness. In retrospect, my fears seemed unfounded, but my aortic stenosis diagnosis had been accompanied by an increasingly paralyzing anxiety. I realized I had spent my life thinking I would be lucky to live to be 50.
My TAVR was a great success. Darryl had been by my side the entire lengthy process. Ten days after the procedure, as we reached the top of a hill on my favorite trail near our home, Darryl said, “Stop. Do you realize what you just did? You walked uphill, talking the whole time, and weren’t short of breath!” I had my life back.
While in the hospital for my valve replacement, I met a cardio-oncologist for the first time. On rounds, she introduced herself and told me about the hospital’s survivorship clinic.
I made an appointment with her, feeling incredibly fortunate to have access to this specialist. Our first appointment was in the hospital’s cardiovascular center. I was comfortable in the familiar surroundings where I had been successfully treated via TAVR, content to wait in the impressive lobby featuring a contemporary, wall-mounted fireplace and colorful, floor-to-ceiling glass created from microscopic images of cardiac tissue. The appointment was uneventful. The following year, my return appointment took place in the hospital’s cancer center, as my doctor met with patients in both clinics.
I wasn’t nervous about this appointment. I felt great and I fully expected my 2-year-old TAVR to be fine. What I didn’t expect was the physical and emotional impact of returning to the scene of the crime, so to speak. I had not stepped foot into an oncology clinic for more than 30 years. I walked into the cancer center, and as I checked in at the front desk, I noticed people waiting who were obviously patients receiving chemotherapy. Standing there I felt my muscles tense, my jaw clench, and a wave of nausea come over me, seemingly out of nowhere. The waiting room chairs were arranged in lines, like a classroom. I took a seat and suddenly felt afraid and alone. When my name was called, I felt shaky, and my disobedient eyes had welled with tears. I felt confused and embarrassed by my reaction. I hadn’t had anxious thoughts. I wasn’t worried. And yet, my body, specifically my central nervous system, had been hijacked by this physical experience. By the time the nurse came into the exam room, I was shaking with tears freely flowing, despite my attempts to wipe them away and my strong desire for composure. When I apologetically explained that I didn’t know why I was suddenly falling apart, she kindly said it was common for cancer survivors to have this response.
Reflecting on the drive home, I realized how the events of the morning had unconsciously elicited physical memories of my own prior cancer treatment. Even though the events had occurred decades before, the steps leading up to that cardio-oncology appointment were reminiscent of those 90-min, early morning drives from my home to the cancer center of another large university hospital in another state where I had lived as a child. Every infusion then was given through a peripheral intravenous line, as there were no chemo ports in the early 1980s. And no medication was given to prevent the violent nausea from the MOPP regimen of nitrogen mustard, vincristine, procarbazine and prednisone. I recalled how even after treatment ended, every time I returned for follow-up, as soon as the familiar surroundings indicated that the hospital was 15 min away, I began to feel anxious and nauseated.
The full impact of my cancer experience remained dormant for decades. I did not fully recognize the unresolved trauma I carried emotionally, nor was I prepared for the extent of the collateral physical damage initiated by high-dose mantle radiation.
This new, first-hand experience of late effects led me to search for information and support online. Disappointingly, I found no patient organization whose primary focus is to provide support and information to long term survivors of childhood and adolescent and young adult cancers. I became involved as a patient advocate in hopes of easing the journey for others, creating a website for survivors who were facing cardiac late effects, and I became a Heart Valve Ambassador with the American Heart Association. On May 7, 2016, I discovered the Hodgkin’s Lymphoma Survival & Late Effects 1960-early 2000s support group on Facebook. Today this private, patients-only group includes 654 members, with more added every week. These women and men, most of whom I’ve never met, have become my Tribe, my friends, my family. They are a source of support, information, and inspiration. And a source of heartbreak as well, as we have lost more friends than I care to count in a few short years. I experience heartbreak over the disproportionate, collective burden of physical and emotional suffering represented here among very real, very human individuals.
My experience with my new-found peer group helped me grasp the need for high-risk surveillance for breast cancer. During my experience with valvular disease, I neglected mammograms. When I went for my first high-risk screening protocol of mammogram and MRI, it had been 3 years since my last screening. Fortunately, the tests were clear, as well as the next round 6 months later. Thirteen months later, in July 2017, I received my first-ever call-back after a mammogram. The radiologist who read the diagnostic images sent a letter with the opinion that the calcifications were likely benign, recommending that I follow-up with repeat tests in 6 months. My primary care provider and I both agreed on biopsy. Two weeks later, ironically on the same day, I received that letter from the radiologist as well as the pathology report from the biopsy: Cancer. Again.
Life seemed to be moving in slow motion. I was teaching middle school full- time, but folding under the pressure of decisions about surgery and reconstruction, multiple medical appointments, and uncertainty about the future. Nine weeks after the biopsy, I took a leave-of-absence and underwent a double mastectomy. I met my oncologist for the first time a full 3 months after I learned the breast biopsy was malignant. At our first meeting, she had to break the news that the surgical pathology indicated I had invasive Her2+, hormone receptor negative, breast cancer. I would need 12 weeks of chemo and a full year of trastuzumab (Herceptin). And I learned that Herceptin carried a risk of heart failure.
After experiencing valve disease and breast cancer as direct results from radiation treatment, the risk of heart failure felt all too real. The anxiety I had managed to mostly avoid now had a strangle-hold. I told my primary care physician, “I know that late effects are here now. What I don’t know is whether I’m standing at the edge of a glacier or in the direct path of an avalanche.”
A few months ago in 2019, I was granted disability retirement from teaching. To look at me, no one would ever guess I have serious health issues. My breast oncologist once said, “Susan, you’re in pretty good shape for the shape that you’re in!” This week I have appointments with a cardiac electrophysiologist for follow-up on arrhythmias (including afib) from a heart monitor test in October. Two days later, I’ll drive back to see a gastroenterologist who will review with me the multiple markedly abnormal results from upper endoscopy, motility, and pH tests. Several months ago, an ENT specialist diagnosed partial paralysis in my left vocal cord. The treatments that saved my life now seem to be slowly stealing it, and on difficult days, I feel as if survivorship is a progressive, terminal illness.
Cancer survivors with late effects, if they are fortunate enough to have no barriers to care, see not only cardio-oncology specialists, but multiple others. Keeping up with my health care is time-consuming, costly, and emotionally draining. I also regularly see a trauma psychologist who uses eye movement desensitization and reprocessing to treat the post-traumatic stress disorder (PTSD) symptoms that originated with childhood cancer.
Two important mentors from the online Hodgkin group have given me hope in spite of an uncertain future. Dave (from Australia) and Dolly (from Texas) taught me how to face death: to speak of it openly, and to love with an open heart. They each wrote of savoring life moment by moment, and each lived fully and courageously to the end of their lives. From them I learned that someday we will die, but on all the other days, we will not. The key is to keep that balance in perspective. They showed me that among the collateral damage there is a certain collateral beauty: although we may not be cured, we can be healed.
Through this process, I am discovering that it is OK to feel vulnerable and afraid and to ask for help, even when others affirm me for being strong. (With my last name, I hear that one a lot!)
When treatment ends, cancer is not won and done. The psychosocial burden and impact on quality of life often goes unaddressed. I’m learning that it takes courage to face and grieve our losses. I grieve that for 7 of our 8 years together, my identity and my time have been consumed by illness. Yet I am infinitely grateful to share present moments with Darryl as my partner in life. I grieve also for the tens of thousands of fellow survivors living with the physical and emotional burdens of their cures, whose needs are not adequately addressed by our current system. My greatest hope is that within my most likely shortened lifetime, significant change takes place to meet these needs.
This piece is dedicated to the ≈16,900,000 cancer survivors, to include the ≈500,000 childhood cancer survivors living in the United States today, to survivors around the globe, and to the memory of those whose lives were cut short by cancer and its ruthless collateral damage. Our deep gratitude goes to the dedicated professionals whose life’s work has given us decades of life that others before us never had the chance to live.
Ms. Strong has reported that she has no relationships relevant to the contents of this paper to report.
- 2020 The Authors