Jackie on left with active ovarian cancer, January 2020 – 3 weeks prior to diagnosis
“Embrace uncertainty. Some of the most beautiful chapters in our lives won’t have a title until much later.”
Do you know someone who has battled cancer? I hope it’s not you or a loved one, but it may be. I hope they’re still with us. I won’t bore you with statistics and graphs. What those numbers say is that we all know someone with cancer now, and it feels hard to make sense of who and why….
- Ovarian cancer rocks a bikini at 51 (humor me please, it will be a minute before I wear a bikini again…)
- Colon cancer comes in superheroes like Chadwick Boseman and superheroic authors like Ibram Kendi
- Brain cancers hitch a ride with resilient young men who rock climb and paint amazing murals
You have your stories too. I know you do. Statistically, you must.
I’ve been sharing my story from inside the belly of the beast of cancer, as seen through the eye of a scientist/business person/author/mom. Diagnosed with ovarian cancer in Feb 2020. Surgery March 2, 2020. 7 cycles of chemo (carboplatin and taxol (March – August 2020). All in the midst of a pandemic. The more intense the journey, the more revealing is the lens of empathy. It’s been eye-opening in so many ways. Here are three things I know for sure:
- We are not mutants.
- Empathy in medicine is required for cures and prevention
- Empathy in research is required for cures and prevention
We are not mutants.
Most cancer research, drugs, and treatments are based on the theory that we are an unlucky few, riding in a body that is somehow broken. We are not just a few anymore, and many of us don’t have the usual cancer mutations. I’m like that. I’m not mad at my body or even my cancer. My body reacted in perfectly logical ways to toxicity I lived with unknowingly in my first ~4 decades. I confess: I believed in “better living through chemistry” until a decade ago. I didn’t realize how much I need to protect myself from ubiquitous pesticides, additives, preservatives, pathogens, molds….on and on….which were terrible food for my cells. I thought nighttime was a vast reservoir of time I could use to balance work and raising young children – sleep was optional. Emotional toxicity was something I thought I could absorb, unharmed. My immune system reacted just as it’s designed to do, screaming, “Danger!” with every emotional and physical assault. In particular, that’s the job of mast cells – positioned like sentries at the environmental interfaces of our bodies – and they did it well. They were so overworked that a few random mutations went unnoticed. Then a few more. And so on. I know how I tilted into cancer, and I believe I’m not especially unusual.
The old way of cancer research hasn’t yielded the miracles we need because it can’t. We will prevent the onslaught of cancer by making the environment our bodies experience friendlier to vibrant life, not by presuming we can design something better than life…on a lab bench. Drugs have sh*^%y tradeoffs (aka side effects) because the body is smarter about its interconnections than we are. The game of scientific design, experiment, publish or perish forces researchers into narrow playgrounds. As a friend in drug discovery for cancer treatments recently said, “most of what I do every day fails.” That’s why I left research and went into business. Most nights, I left the lab feeling like I hadn’t done a good day’s work.
I went into scientific research to help people, but my own work in organometallic chemistry was too far removed from humanity. Ironically, this work of curing my own cancer from the inside-out fulfills some part of the dream of my 22-year-old self. The difference now is that I have empathy for the patient. I am she. I know and love too many more like me.
Empathy in medicine is required for cures and prevention
I’m not talking about slick institutional marketing videos with actors pretending to read the minds of people passing by. I’m talking about real-life doctors who listen. They have the emotional resilience to be bothered by the fact that too many people die on their watch with the same treatments used for 50 years. These special doctors metabolize grief rather than become numb to it. They walk in sacred spaces with their patients and families, hoping, praying, and working for new options. They don’t have all the answers and admit it. They realize patient intuition is powerful, and they incorporate those insights into treatment plans, balanced by hard-earned perspective from decades of practice. They learn and express gratitude for new ideas that are logical and seem to be working. They offer hope, respect, and empathy, over and over. They do all of this despite the inhuman constraints imposed on doctors by hospital systems.
Other doctors get burned out. It’s understandable. They start conversations with, “I’m not going to sugarcoat this…” before reciting commonly available statistics. Uhm. Please DO sugarcoat. And, we can google too; information is not your superpower anymore, ma’am. Some docs convey more arrogance and power than the statistics support. They present themselves as our only salvation, and our fear is their fuel. If only they had a miraculously different record to back up that bluster. Unfortunately, they don’t. “Standard of care” is a kind of factory model, when you strip away the humanity. Sometimes doctors forget to ask, “how are you today?” opting for, “You must be feeling awful after all that chemo, so here’s my advice…” Actually, I’m heading out for a run. Are we done yet?!
A cancer diagnosis is a vulnerable thing. It’s hard to walk away from the fear and find empathy. But it’s possible. Only a doctor who works with us and our bodies can bring about the cures we need. Doctors who retain empathy are heroes…and rebels in a system that too often saps humanity.
Empathy in research is required for cures and prevention
You might not think empathy and scientific research are compatible at all. Independence. Logic. Data. Cold, hard facts. That’s what we’ve been taught wins in research. All that. Yeah, sure, but to what end? In what context? Asking and answering which big questions that really matter? And what are the real motivations of the human being doing the work? Independence is as much of a myth in science as in any other human endeavor. Pretending cold hard facts add themselves up without the help of human interpretation and theories is naïve. Being honest about the humanity of science would help people trust it more.
Most of us go into research to do something meaningful and useful. I did. As I gained experience, I found that the reductionist nature of research pushes us time and again into a very narrow box. We settle for solving itty bitty problems instead of big ones. We design. We experiment. We publish papers. The first few are exhilarating. Then the niggling voice asks, “to what end?” Maybe it quietly asks, “when was your last good day’s work?” We try to build on each other’s work, but too often, it adds up to less than we hoped. We lose touch with our original motivations, creativity, curiosity, and imagination. The game becomes more about looking smart at a conference, publishing enough, getting that coveted professorship, earning a named chair position, filing a patent…just making a living. People scramble to test pharmaceuticals – often old drugs that might find new uses. Sometimes it’s like throwing spaghetti against the wall. We celebrate when drugs and treatments confer a few months of survival, even though a lifetime is what we all want. All the while, cancer becomes an epidemic.
Empathy would make all the difference. Looking into the faces of young kids whose dad is bedridden by years of cancer treatments would remind us to stay focused on the big problems and develop more holistic and integrative solutions. Patients who are listening to their bodies offer clues from the inside-out which we should heed, co-creating research design with what works in human bodies. Let our bodies tell us what the lab bench cannot. The internet can be a source of confusion, but also a system-smashing, model-busting way for patients to connect, share their journeys, and excavate hope from cross-functional studies and metadata when burned-out experts toss tired old statistics our way. Researchers who are guided by empathy are heroes…and rebels with a good cause.
Those are 3 lessons so far from my perch in the belly of the beast of ovarian cancer. We kissed some frogs along the way but are fortunate to have landed with a team of local and virtual healers, who combine empathy, intellect, curiosity, and imagination. We are also fortunate to live in a time when information flows freely. It’s a blessing to have the tools we do. I hope and pray that cancer research and treatment is upended and improved in ways similar to other systems that serve the almighty dollar before people. It’s time.
It’s funny. In the last yoga class I taught, I used inspiration cards to help students with their intention for practice. The one I was dealt said, “entrepreneurship.” What?! I was heading into surgery and so much more; my entrepreneurial business was definitely going to take a back seat. Now, I understand. Many times in life, I’ve walked through traditional experiences only to come out the other side knowing change must come, with ideas about how. Research. Business. Work/family balance. The traditional models have their merits but all left me wanting. This cancer journey has been no different.
Combining old and new into a new retro-futuristic art form has a name: steampunk. For the last 7 months, I took traditional “standard of care” surgery and chemotherapy, which has done good work. Integrative supports helped me live well in the midst of that assault. Those treatments hit the reset button so that healing can begin, unwinding the cascade of events that led to cancer in the first place and making my body’s terrain inhospitable to cancer again. At heart, I’m an entrepreneur and a rebel. Ask my dad. He fired me from our grocery store when I was 13 for insubordination! But innovation and entrepreneurship have their place when the outcomes of the usual way aren’t ideal. Healing from ovarian cancer and sustaining remission requires steampunk.
Steampunk as imagined in art therapy
In many ways, this next part of the cancer journey puts me in touch with my 22-year-old self, who was excited to walk into MIT. Back then, all I wanted was to make a difference and help people through scientific inquiry and discovery. Such was the audacity of youth. Luckily, that girl is still here. She has more tools than ever…and she’s hanging onto the bikini for later.
Ongoing and endless thanks to Dr. Stephen Waggoner of University Hospitals who sets the bar for empathy in medicine, as an oncologist and surgeon. Our virtual healing team – including Michele Gerenscer of Nutritional Solutions, Dr. Mark Renneker, and the Block Clinic – gives us courage and confidence in pushing beyond the standard of care.
Heartfelt thanks to art therapist Barbara DiScenna with UH/Seidman Cancer Center for igniting the healing power of creativity.
Thanks to John LeMay for edits to this post and always grounding us in the most productive forms of rebellion via careful, thorough, and exhaustive research.
Thanks to Liz Fretz for teaching me about steampunk and so many other healing things. Barb Acho’s client shared the opening quote upon reading earlier blog posts; I’m grateful for the inspiration.
Finally, thanks to Susan Colby, whose rebellious and timely package provided excellent company for finishing this post!
For more on how to cultivate and steward empathy, individually, organizationally, and nationally, check out Jackie’s book: Currency of Empathy – The Secret to Thriving in Business & Life.