Its Monday morning, July 2nd, 2018, I’m sitting in the reception area on the 3rd floor at the Memorial Sloan Kettering 53rd Street clinic waiting to see a doctor, my mind racing with thought after thought as I try my best to not let the demons take over my psyche. “Stay Positive”. “We Got this”. But it was really, really difficult to do that. I was at that time in every patient’s experience where there are so many unknowns. All of “those” thoughts start to run through your mind. What does the future hold for me and my family? What’s going to happen to me? Trying to stay relaxed, I played “Words with Friends”, took deep, cleansing breaths, and rested my head on my wife’s shoulder as we held each other.
My wife, Wendy, is unbelievable in these situations. She has a way of focusing on an issue that I can’t possibly do. I realize now that her silence was disguising her intense search on who or what might be able to be a resource for us. Who do we know? What information on my tumor is out there? I had a yet-to-be formal diagnosis, but we were pretty sure it was some form of cancer – a sarcoma. As she looked up at the wall, she noticed that the reception area was the gift of “The Kristen Ann Carr Fund.” “Wait a minute” she said, “I went to high school with Kristen’s fiancé. Maybe he is still involved”. A few minutes of Facebooking later, and she’s on the phone with Rishon and then Michael. “What do you need?” was the reply on the other end.
This is the start of my journey as a survivor.
About a week after that first visit, we returned to The Kristen Ann Carr Fund Center for Sarcoma Treatment and Research on 53rd Street, where we met Dr. Mrinal Gounder (2010-2011 KACF Medical Oncology Fellow) and Dr. Philip Spanheimer (2018-2019 KACF Surgical Oncology Fellow). They gave us a brief tutorial on “Sarcoma 101” and went through the steps they would take to specifically diagnose my sarcoma and arrive at a formal treatment plan. A biopsy followed several days later and on July 18th I had a definitive diagnosis – Dedifferentiated Liposarcoma. The next step was to meet with Dr. Sam Singer and his team – on Tuesday, July 24th.. “We’re going to take it out” said Dr. Singer. “How’s Thursday for you?”
“Wait a minute – you mean the day after tomorrow?!” I exclaimed as Wendy and I shared stunned glances. “Doc – can I at least have the weekend??” “OK”, he said. “Monday it is.”
So, on Monday July 30 2018, I headed to MSK for surgery to remove a 18cm long, 14cm wide liposarcoma that was inhabiting my abdomen and pelvis, and wrapped around my large intestine. The 11-hour surgery was surely not easy on the medical team. How is any 11-hour surgery “routine”? But fortunately, Dr. Singer and Dr. Philip Paty and the surgical teams worked their magic and were able to remove it. A long, 23-day hospital stay and months of healing were next. A subsequent “clean-up” surgery and 12-day hospital day followed in August 2019.
Today, I am in a much better place than that first day siting in the chairs at the 53rd street clinic. My recent CAT scan shows that the tumor is completely gone, and while I do have some long-term healing to complete, the medical team is extremely encouraged with my current prognosis and long-term outlook. I’m a survivor.
During my time in-patient at MSK and in the months that followed, we began to learn of the grants that The Kristen Ann Carr Fund has made to raise the awareness of sarcomas, to fund critical sarcoma research, and to bring world-renowned oncologists and clinicians to MSK and other premier cancer centers around the country. Virtually my entire medical team has received funding from The Kristen Ann Carr Fund to help research, diagnose and cure cancers like I had. I realized that I am, in as direct a way as I can state, here today because of the efforts of KACF and all those that have generously donated over the years.
Wendy and I quickly signed up to attend the 2019 Night to Remember event – we saw it as an opportunity to personally thank those that have directly impacted us, contribute to an exceptionally worthy cause, and spend an enjoyable evening with the doctors and staff that saved my life. We were also grateful to be able to share our journey with Barbara Carr and Dave Marsh, to show them that there are, and will continue to be amazing outcomes that come as a direct result of the efforts made through The Kristen Ann Carr Fund.
As The Kristen Ann Carr Fund prepares for the 2020 Night To Remember, Wendy and I are, once again, thrilled to be a part of this fantastic organization. We look forward to helping doctors and patients achieve outcomes similar to mine, and to enable researchers to develop means of earlier diagnosis. Please join us in the battle to fight rare cancers and sarcomas. Your contributions do make a difference. Ours is one success story of many more to come.