The First of Too Many – Lindsey Motley
My friend Lindsey Motley died of colorectal cancer (CRC) today. She was 29 years old. She was very special in many ways to an incredibly large number of people – including to me.
Lindsey was many things… Too many things to list to do justice. I think most of all she was a loving wife and mother to a young daughter. At the end of the day what matters more than that? But Lindsey was more than that.
Diagnosed with CRC when she was only 26 years old – she was 17 weeks pregnant at the time. She bravely fought her cancer with surgery and chemotherapy while simultaneously fighting for the health of her unborn child. A very healthy and special toddler lost her Mom today.
Lindsey was vibrant, funny and it was impossible not to like her as soon as you met her – whether online or in person. This seemed to include basically her entire hometown of Greenville, SC. They held an amazing “Lindsey’s Lights” event just a short while ago. Huge swaths of the town were lined with lights in Lindsey’s honor. I was contacted by the organizer to spread the word in the CRC online community to see if people wanted to join in with “virtual lights” on Facebook. Did they ever! Facebook was filled with photos of Lindsey’s Lights that night, from as far away as Russia and Argentina! She was already getting weak by that point but I know those Lights, both in her town & virtual, meant so much to her. Here is the picture sent all the way from Russia:
Lindsey became an amazing advocate for early-onset CRC after her diagnosis. This is how many in the CRC community got to know her. She was a Colondar 2.0 model for The Colon Club in 2015 where her inspirational story was told. She held and participated in many CRC advocacy events to spread awareness of the disease. She was my Colondar Sister. But that is actually not how I got to know Lindsey.
How Did I Meet Lindsey?
Lindsey was the first of too many. It is obvious to everyone that reads this blog or follows me on social media that one of my focuses is trying to help fellow members of the CRC community understand the science behind clinical trials and experimental therapies. This is a huge passion of mine. When I first started to read CRC message boards in late 2014, I started to see that so many people were being forced to figure out the clinical trial world without understanding the scientific basis for the trials they were being asked to find – sometimes all by themselves. That is not their fault – it is the system’s fault. As a scientist I was heartbroken seeing it. I introduced myself to the community as a scientist who had experience with cancer drug discovery. This was before I began using my columns & websites to consolidate scientific information.
Who was the first to text me? Lindsey. She was the first, the first fellow CRC patient who asked for my help. Even with all her other incredible attributes, that will always make her have a special place in my heart.
After I talked to her briefly, I could tell what an incredible fighter she was. She fired more science questions at me that first day in a barrage of back & forth emails than my Ph.D. oral defense did! She may not have been a scientist but she was damn smart and she kept me on my toes! Many emails later, she had decided on a list of trials she wanted to discuss with her MD. They discussed, made a medical decision and chose one. I told her that their choice would have been my first choice too. Lindsey had an aggressive disease but the immunotherapy trial she went on seemed to stabilize her for a few months. There is no comparator to know for sure if it helped her or not but I like to think it did. I like to think our discussions led to her having a better summer with her family.
Eventually her cancer began to grow and she left the trial. We discussed new trials and she was excited to maybe do a trial here in San Diego. She wanted to see our house construction project. We joked that we would get adjacent chairs in the UCSD infusion center and liven the place up. Various parameters ended up leading her to a different trial at Duke. She never made that trip to San Diego.
We did get to meet each other though! Just once. It was a great meeting. A few days before I left for my Colondar’s Colon Camp last summer I got an excited text from Lindsey. She was such an amazing advocate that she had been invited to return to Colon Camp as an alumni. She was thrilled that we would be able to meet in person – I was too. It was a very special meeting that we captured with a quick snapshot – I had made that T-shirt for her to wear during her immunotherapy clinical trial. She was so excited to bring it to our meeting. Like an idiot, I forgot my matching shirt at home. She laughed at the absent minded scientist. But I think the picture turned out OK anyways.
If anyone wonders: why do I do what I do? Why am I continuously more passionate for oncology drug discovery and explaining science to too many fellow patients that need help? Why am I passionate that a CRC breakthrough be found not only for myself but others as well? An incredible woman named Lindsey who died today before her 30th birthday – and too many others like her – are the reason. Lindsey inspires me daily and I think of her whenever I carry on… what started with her.
Lindsey was the first of too many – Rest in Peace Sister