XIV. A strong mind and a fragile heart
The mood was electric. I could barely hear the words of the gala emcee with my heart pounding in my ears. I caught every other word, “credits Leukemia & Lymphoma Society… saving her sanity.” I didn’t hear my name as I sat frozen to my chair. I found myself caught between a strong mind and a fragile heart as I sat ugly crying in front of a thousand people. Those words took me straight back to the day before my first chemotherapy and my first contact with the society.
Every minute of that day is engrained in my memory. I was on edge because I had received two different opinions. My first biopsy came back clean while my second opinion was alarming enough to bring giants to their knees. My doctor not only found cancer, she recommended starting chemotherapy in two weeks due to its aggressive nature. Only about 3 percent of all lymphomas in adults represent anaplastic lymphoma and treatment is required upon diagnosis because of its quick progression. I immediately turned to Johns Hopkins for a third opinion and they promised results on the day before my first treatment. The only problem was that my doctor was on vacation. The nurses refused to read me my chart.
I desperately dialed a number that was proactively left on my blog post by an LLS employee. Megan put me in touch with patient advocates from LLS who helped me understand my rights as a patient. Armed with knowledge, I received my diagnosis, which concurred with the findings from my second opinion. LLS saved my sanity and gave me the unwavering confidence that I needed on my very own D-Day.
I knew that I needed to make my way to the stage but I was too busy reflecting on the fact that the same society that saved me was now honoring me with their Mission Award. I was paralyzed clinging to my Bo for strength. I silently willed the audience to understand that my campaign for LLS was never about an award. For me, it was about the fault in the stars. I don’t want to live in a world with this fault: a world with cancer. I felt compelled to speak out, do something, and share my experience with LLS to further their mission. It was about sharing the grueling details of a life with and after cancer, instead of covering them up. It wasn’t lymphoma that took my grandfather’s life, it was the after effects from the potent chemotherapy and in my darkest moments I can’t escape them. Fear and doubt remain like smoke drifting from a gun barrel. Is that my fate?
I thought back to a night in the midst of my campaign to secure a research grant. It was 2AM and I couldn’t sleep. It would have been too easy to curl up in bed and spend the night fighting my Bo for covers. Instead, I found myself wide awake willing the universe to let me make a difference. I’ve only told one person about why I stay up at night trying to think of new ways to take on the seemingly impossible fights. I was standing in a bar with my dear friend who was managing my campaign. We were planning our fourth fundraising event of the week and she said something along the lines of, “what happened to doing this only for fun?” To which I painfully whispered, “What if my cancer returns? And what if, like so many of our friends and family, it comes back with a vengeance?” We blamed the jalapeno martinis for our tears.
It wasn’t easy for me to leave my chair or my Bo’s gentle grip to accept that award, but something unexpected happened during my fundraising campaign. I gained a new group of friends who, quite literally, continue to smile in the face of death and take action. Each and every one of my new friends deserved this award. There was the kindergarten teacher who watched her student fight bravely and ultimately lose his battle. There was the mother who lost her son, the husband who stayed unwavering at his wife’s side, and the daughter who lost her father too soon. In the past it has always been my Bo to lift me up when I physically couldn’t move and he surely would have if there wasn’t a new hand reaching out. The audience erupted as I took my new friend’s hand and as we made our way to the stage I reflected on our shared experience. The jubilation within the room was almost tangible.
Twenty-two of my new friends raised a record-breaking $1.81 million in ten weeks. The magnitude of it takes your breath away, doesn’t it? My part of raising $54,000 was microscopic in light of the difference that we all made together to further advance treatments and the quality of life for patients like me. I am in awe of the outpouring of generosity from friends, family, colleagues and strangers alike. Yours is a wealth of another magnitude. You’ve all helped me to emerge stronger in my broken places and to fund a research grant for non-Hodgkin’s lymphoma in memory of my grandfather, who shared my disease.
To celebrate making the world just a little bit better, I dragged my Bo on another European adventure. There was one night in particular that arrived like a pale mist and slipped permanently into every crevice of my soul. After sunset, my Bo and I danced slowly in Peristil square, the entranceway to Diocletian’s Palace on the Dalmatian coast. To dance with him was like living in music itself. I couldn’t bring myself to tell him, but I’ll be forever grateful for that moment. Two years before on that very day, I found myself in that same square unsure of my future only to fly home the next day to discover my diagnosis. As I swayed in his arms, I did not believe any darkness could endure for the very next day I knew that I was going to wake up healthy and sip cappuccino on the sea. Fuck cancer.