As people, we often have multiple stories to tell, from different perspectives. Multiple stories and perspectives can be wed or braided together around the same themes. Here we braid together two separate perspectives of a patient author and a physician author, respectively.
From both perspectives, this is a story about the power of care, cancer, and quality of life.
Following my cancer diagnosis of nodal marginal zone lymphoma, I struggled with my own mortality as I went through three rounds of chemotherapy, surgery, and radiation.
My call to action was in response to a recognition that my experience with cancer was not unique. To improve the journeys of others who shared my experience, I innovated. I created a technology platform that modeled and rewarded compassion towards others, keeping the users engaged throughout the months, and even years of illness.
Unfortunately, due to misplaced trust, I found myself having to disband my startup company and release my employees, one of whom then filed for bankruptcy. I noticed my hair falling out, not from chemotherapy this time, but from stress. I was in constant abdominal pain, and at one point, vomiting blood. My oncologist suggested numerous tests and the possibility of new cancer. This was too much for me to process. I never followed up, and to my knowledge, neither did my doctor. I left his office, sold my house, and determined to forge a new path focused on my quality of life.
Quality of life is something of a moving target that can be difficult to measure. There are so many ramifications. Had you measured my quality of life in the oncologist’s office that day by any tangible medical test results, you probably would have come to the conclusion that my quality of life was abysmal, and the outlook not much better. Had you measured my quality of life by my decision to travel, you may have judged me mentally deficient. Yet, if you were to measure my quality of life today, you might instead be envious. I have learned to live now — to let go and find joy daily.
How does one measure the intangible, evolving values, and habits that create richness and meaning in a person’s life? Where quantitative measurements leave off, our hearts and souls come into play. Our hearts need meaning and engagement; our souls need nourishment. We react to changes in our quality of life as events unfold.
Treatments alter our paths; we adjust, sometimes reluctantly. Comparing life pre- and post-cancer diagnosis is akin to comparing apples and oranges. The experience is life-changing for many of us, with rewards and challenges not easily captured in a data series. In an effort to cope, intangible sentiments, such as gratitude, can skew our perspective. Thankfully, we are inherently flexible creatures.
On a personal level, cancer can ultimately be an emotional experience. The medicine can potentially be viewed as peripheral — a sometimes unwanted and terrifying intrusion into one’s life. For these reasons and more, health-related quality of life (HRQoL) studies in cancer research are welcomed, as they open up the discussion about the patient experience and the long-term impact of the cancer diagnosis and treatment.
These studies start to address the difficult question of quantity (if afforded by treatment) versus quality – of life. However, data alone lack the emotional and spiritual dimension that define the cancer experience. Frequently, the reactive and interventional mindset of western medicine at times focuses primarily on physically saving lives. Technology, procedures, and surgeries are valuable tools in the medical arsenal. Yet the very medical interventions designed to save us can also be part of the overall experience that craves healing.
Post-treatment, one may be “cured” or in remission, at least for the moment. Medical appointments become less frequent, if not less traumatic. Patients are on their own to find answers to complex emotional, psychological, and practical issues they are learning to live with after cancer. In this post-treatment period, cardio-oncologists (or onco-cardiologists) have a unique opportunity, with an ongoing patient relationship centered on heart health. In the setting of a multidisciplinary health care team, there is also an opportunity to address overall health and healing.
Patients with cancer really care about their health and want hope and inspiration. More than anything, they want a sense of control. Whether it is a placebo or real, a sense of control changes the emotional and psychological paradigm, and when coupled with healthy lifestyle habits, can likely impact physiology as well.
Modern medicine has followed the promise of technology, and for many of us, that technology is saving and extending our lives. Nevertheless, we must not overlook the power of the heart and soul in medicine to heal. The impact on patients of telling their story and maintaining connectivity — on social media while traveling around the country or the world on the “cancer road trip” — can be astronomical.
Sharing about how, through the cancer journey, patients have found that taking care of one’s heart (in a more soulful context) is so important, as is exercise for cardiac, mental, and spiritual health can have a profound influence. In medicine, and particularly in preventive cardio-oncology, it is important to recognize preventive efforts for patients before they develop any evidence of injury to the heart from cancer therapies.
In the words of the late Toni Morrison: “Make up a story … tell us what the world has been to you in the dark places and in the light. Don’t tell us what to believe, what to fear. Show us belief’s wide skirt and the stitch that unravels fear’s caul.”
Perhaps HRQoL is at least partly about the stories we share and how we tell them.
We hope that braiding together both our perspectives and sharing this story together resonates with you as you pursue the art, science, and heart of medicine.
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