Living and Loving Through Ocular Melanoma
Posted on July 25, 2012, 12:56 AM
By Sara Selig
I remember the day Gregg was diagnosed with a malignant tumor in his eye like it was yesterday. Two days in a row, after our morning jog, Gregg complained that when he looked at the pavement out of his right eye it appeared “wavy.” As a fourth-year medical student at the time, I didn’t really know what this could signify, but I tried my best. “Maybe you’re drinking too much caffeine,” I suggested. “Or maybe you have an ocular migraine or a migraine aura without the headache.” I tried to convince Gregg that it wasn’t something we should be concerned about. After all, how could I allow my mind to go to a place in which the love of my life had something seriously wrong?
Luckily, Gregg realized the level of medical advice he was receiving, and made an appointment with our family ophthalmologist. Gregg came home from that Friday appointment visibly shaken and anxious. He explained to me that the ophthalmologist had seen something in his eye that he wanted a specialist to look at. It could be a “freckle,” or “mole,” but it also could be something worse.
On October 31, 2006, we met with a specialist, an ocular oncologist. He examined Gregg’s eye and then had us sit down together. He explained that Gregg had a “bump” behind his eye. I knew he meant tumor, but the second anyone said the word “tumor” to us that day, my senses completely shut off in an uncontrollable way. The way the ocular oncologist carefully used the word “bump” allowed me to stay somewhat present and hear what he had to say. Next came a range of additional tests and meetings with both a radiation oncologist and a medical oncologist—a lot in one day. Especially when it’s the first day you are receiving a diagnosis of ocular melanoma, a cancer we had never heard of before and one that typically affects people in their 50s and 60s. What were we doing here, at the ages of 29 and 34? We went through the motions, taking the tests and responding to question after question, but we felt as if we were in some awful dream. We couldn’t have known, then, the impact this day would have on our lives.
Gregg had his eye tumor treated and spent Thanksgiving 2006 with an eye patch over his eye as his eye recovered from treatment. The emotional healing took longer than the physical healing, but Gregg and I worked hard to get back into life and put the cancer “behind us,” or at least “aside of us.” Unfortunately, that became more difficult to do when we learned the devastating news, at Gregg’s one year follow-up, that the cancer had spread to his liver. There was no known cure and no treatment had been proven to extend lives. We were told Gregg had 6-9 months to live. Instead of living lives similar to our 30-something year old peers, we were being challenged to our core and were working to face life with as much perseverance and courage as possible.
Gregg felt very strongly, early on, that he did not want to be treated by a single physician, but, rather, he wanted to bring together the intellects of the best and the brightest and be cared for by a team of physicians. If no single person, institution, or discipline had the answers, then Gregg wanted to bring people together to think, collaboratively, about how to save his life. As an internal medicine resident at the time, I remember feeling uncomfortable about Gregg’s requests—I knew the medical field didn’t really work that way, and I was afraid Gregg was going to offend or alienate someone by expecting this kind of approach to his care. But, being the talented psychologist, coach, and fierce patient advocate that he was, he was able to encourage and inspire his medical team to do just that—work as a team. The exceptional physicians helping to care for Gregg accepted the challenge and became strong advocates for Gregg, all while working together as a team. Gregg had dedicated physicians from five different disciplines communicating about his care from more than six different centers around the country. A psychologist both by birth and by training, Gregg believed this kind of collaboration could not only save his life, but is the type of collaboration that will, ultimately, find a cure to ocular melanoma and save other lives as well.
We conferred with our trusted physicians and came up with a plan that made the most sense to us. Over the course of the five years we spent fighting ocular melanoma, this was the approach we relied on. We worked together as a tenacious team. Together, we would learn about the cancer’s status, through scans Gregg would get every 8-12 weeks, and then get several opinions and gather as much data as quickly as possible. We traveled all over the country to see physicians and look into clinical trials. We sought out alternative approaches and worked hard to fit everything together. We considered everything and weighed the potential risks and benefits. Then, in the absence of outcome data (the most meaningful kind data, of course, and how I have learned to make medical decisions throughout my training), we had to distill all the information and go with our “gut” feeling about what to do next. Although Gregg and I were a fierce team against ocular melanoma, we were not alone—we are very lucky to have extraordinary family, friends, and colleagues who have helped and stood by us through each decision, each new treatment, and helped us adjust to each “new normal.”
Throughout Gregg’s five years of battling ocular melanoma, he taught me, our friends and families, and our medical team a great deal about perseverance, not accepting the “status quo,” living a full life with cancer, and about advocacy. After his diagnosis, we continued to live life as fully as possible—both personally and professionally. Professionally, Gregg continued his work with the Clinton Foundation and the Elizabeth Glaser Pediatric AIDS Foundation in Kenya and Mozambique, where he was helping establish psychosocial programming for children and families affected by HIV and AIDS. Gregg’s professional work later focused on management and organizational psychology in Boston. He continued to work full time and co-founded the OPUS Leadership Group—an organizational, leadership, and management development firm with offices in Denver and Boston—while undergoing treatment. Right up until his death in January 2012, Gregg approached everything with a sense of hope and optimism that was infectious. His indomitable spirit lasts inside all of us who knew and loved him. After Gregg’s death, Brigham and Women’s Hospital in Boston—where Gregg spearheaded groundbreaking work on leadership and teamwork in medical training—established the Gregg Stracks Program for Leadership and Teamwork in Medicine. Through this, and in other ways, Gregg continues to teach and have an amazing impact on the world even though he is no longer physically with us.
Remarkably, in Gregg’s last few days, he taught lessons that will always remain with me. Before that time, I had never really believed in “soul mates” or a spirit world, per se. But, what I felt with Gregg taught me how two people’s souls can be connected in a way that transcends our earthly being. And then, the final lesson Gregg gave me while here with us—he faced his greatest fear with fortitude. Gregg’s intense focus on living life so fully over the past five years had been absolutely admirable and inspirational. However, in facing death, his actions were just as admirable and inspirational, if not more so. It became clear to me that Gregg could continue to cling to life, but that its quality was continuing to diminish each day. It became so hard for me to see him suffer. Although our fourth wedding anniversary was two days away, I knew my anniversary gift to Gregg had to be to release him, to help him let go. And, so, I did just that… I held Gregg in my arms as I lay beside him all day and then, in the afternoon, while not wanting to or believing it myself, I told Gregg that he needed to move on to his next journey. I reassured him, and myself, that he would be ok, that I would be ok, that our love is eternal, and that we will always be connected—our souls are intertwined forever. About an hour later, while I held him in my arms, Gregg took his last breaths on this earth, transitioning with a grace and dignity that will always be with me.
It has been just 6 months since that day in January that I held Gregg in my arms for the last time. I miss Gregg with all my heart and my soul aches to be with him. I grieve losing the love of my life. I grieve losing our future together. I am just beginning to learn how to live without Gregg physically by my side. I continue to learn from Gregg and work to remain open to life, love, and growth as Gregg and I have always fought to do even in the face of adversity. I am buoyed by the deep love Gregg and I share as well as the love and support of our extraordinary community of family and friends. I wish I knew in my heart that I will be OK. I don’t, yet. But I hope for it, for myself and because it is what Gregg would want of me.
Sara Selig, MD, a recent graduate of the Doris and Howard Hiatt Residency in Global Health Equity and Internal Medicine at Brigham and Women’s Hospital, is a physician in Boston, Massachusetts. Together with her husband, Gregg, and the Melanoma Research Foundation, she co-founded MRF’s CURE OM (Community United for Research and Education of Ocular Melanoma) initiative for which she is currently the Director. You can find their site at www.cureom.org
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