In January of 2015, Tom went public with his Terminally Optimistic blog. He, my husband, and I met at an online support group called The Colon Club. That same month, I started a thread on The Colon Club pertaining to the clinical trial that I was hoping to (and eventually did) get into. Tom was one of the first to reply to the thread. He was excited about the trial, and stated that he had been considering it a possibility for himself, if needed.
Our community on The Colon Club celebrated when Tom was filmed for part of Ken Burns' documentary, Emperor of All Maladies, because of his work on the cancer drug, LDK-378 (ceritinib). Fellow Colon Clubbers flung good-natured jabs at him after the show aired. He always responded with humor and grace. He took fighting cancer completely seriously, but he could always laugh at himself. It was one of his most endearing qualities.
We found common ground beyond our stage IV cancer diagnoses. We both found sleep elusive, which made the time zone difference between us irrelevant; he had two young daughters (I had two young sons...plus three more); we both married engineers; and Tom had lived in Michigan until he left for grad school. We kept close tabs on each other. We joked about arranging a marriage (or two!) between his kids and mine. We previewed each other's blogs, and we prayed for each other often. More times than I can count, he was the first one I'd message whenever I had urgent (good or bad) news to share. He was always there.
After reading his first blog posts, I encouraged him to share his blog with another online community where I hung out, colontown. Initially, he told me he was "spread too thin to join another group". He asked if I would post his blog link there so that he wouldn't have to divide his attention with yet another outlet. I encouraged him (again) to join so that he could post it himself. He finally relented with one caveat:
"I'll join as long as it's OK if I don't post too frequently."
Funny, Tom.
Tom not only joined the group, he transformed it. That spin-off page started with just three members, myself included, who had participated in a clinical trial. We patients were there to spread awareness and answer questions from other colontown members about the clinical trials we had joined. When Tom came onboard, he turbo-charged that space with unending links to more and more clinical trials almost daily. With the help of a mutual friend and advocate, Maia, plus a couple of research scientists--another dear friend and fellow patient, Danielle Maatouk, among them--who he recruited to help, even more patients would be reached. This Facebook page has become a resource unlike any other in the world. Other trial pages spun off from this first one; each bears Tom's name in tribute to him for his zeal for educating patients about clinical trials.
I had the honor of meeting Tom in person for the first time in July, 2016. He was enjoying what he called a cannonball life that summer, but also investigating potential treatment options in Michigan. My house was a short car trip from his destination, so my husband threw some steaks on the grill in anticipation of his visit. We discussed science, and cancer, and life. We laughed like we had known each other all our lives.
Too often Tom and I grieved when one after another of our mutual friends would die. Several died last November, including Danielle. We both agreed that November was the cruelest month. And now it has taken Tom, too.
Rest in Peace, dear Tom. I hope that the friends we knew were there to greet you. I hope that in the other world, you have found the knowledge you sought so fervently your entire adult life. I wish that you could whisper what you've learned to those you left behind.
I will think of you often, tears streaming at times, but always with your words, "To Life" at the forefront of my mind. You gave so much, and worked so hard. Be at rest now, and live forever with God, the Author of life.
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| Friends forever. |
