It’s January 11th, 2017, well past midnight, probably around 3 am. I am on the side of a mountain in Africa, 1000 miles away from home, in pitch black out, -20º with the winds, and I can barely feel my fingers. All I can see is the headlamp spot of light shining on the trail.
I think to myself, “Well, Lila, maybe this was not your best idea!” I look up and call my teammate in front of me, my best friend Dawn, and say, “Dawn, I am sorry I talked you into this.” She just looks at me, gives a knowing smile, then turns back to the path in front of us!
So how did I get there? Well, let’s teleport back to 2009. I am a healthy 39-year-old, and my husband and I had hopes of starting a family, but I was having trouble getting pregnant, and my doctor discovered that I was severely anemic. This led me to a hematologist’s office where I heard the words that changed my life: “You have cancer,” specifically acute myeloid leukemia (AML). 60% of my stem cells were cancerous. I was told that I must go immediately into the hospital to start 24/7 chemo. At that moment, my life as I knew it stopped, and my dreams of motherhood were gone. I knew nothing about leukemia except that it was blood cancer. I asked my doctor what I should do, and she gave me the best advice I have ever received: “Do not go anywhere else on the internet except for The Leukemia and Lymphoma Society (LLS) now Blood Cancer United.” From that moment on, Blood Cancer United has been my beacon of hope, much like my headlamp many years later, Blood Cancer United has guided me through my darkest hours and my proudest!
So fast forward… I spent 3 months in-patient at UCLA, received a stem transplant from my sister, and after a year of hardship, I was declared cancer-free. I even ran the LA Marathon with Team In Training, 6 months post-transplant to mark my return to normal.
Cut to 4 years later in 2014, I thought my cancer chapter was behind me, and I was planning my next adventure: to climb the highest peak in Africa, Kilimanjaro. The very week that I was planning on booking flights, I found out that my cancer was back. Back in the hospital, a friend designed a window frame with a beautiful photograph of Kilimanjaro in it and hung it on the wall opposite my bed. Throughout my treatment, I would stare at that window and visualize myself climbing the mountain. My doctors and nurses all asked about the picture, and soon my solo trip became a group trip comprised of 12 doctors, nurses, fellow survivors, and friends. After a second stem cell transplant, this time from an anonymous donor, I left the hospital with purpose, and through a partnership with Blood Cancer United, my solo climb evolved into Team In Training’s Climb 2 Cure. My team raised $133,000 for their first climb. To date, climbers have raised over $2M for our mission and have climbed mountains across the world!
But my story does not end there. When I relapsed for the third time in 2018, thanks to Blood Cancer United's commitment to pushing the boundaries on AML treatments, the treatment landscape had drastically improved. I contacted the Blood Cancer United Clinical Trial nurse navigator, and within 24 hours, my doctor and I had a comprehensive list of potential trial treatments. We selected one trial treatment plan, and I received immunotherapies and spent a limited amount of time in the hospital. My doctor and I discussed a future in which new therapies could target my disease even more effectively. Now, there are OPTIONS, and there is HOPE. I refer to the last decade as my bonus decade. I have defied the odds not by chance, but because Blood Cancer United is tirelessly working towards new treatments and a cure. Although there is still much work to be done, too many still succumb to this terrible disease. The fight is not over, and if I were to face AML for a fourth time, with Blood Cancer United in my corner, I know that I will not be alone and that I will triumph.
Blood Cancer United has not only saved my life, but it has also inspired my life's work and purpose. When I reached the summit of Kilimanjaro, I made a commitment to pursue a path with a focus on social impact. As a three-time AML patient, a high-impact volunteer, an advocate on Capitol Hill, and most recently, making the switch from an Blood Cancer United volunteer to a Blood Cancer United employee, I have experienced Blood Cancer United as a beacon of knowledge, empathy, and ultimately, hope. I am proud to say that from every perspective, Blood Cancer United has remained an inspiration
Lila
acute myeloid leukemia (AML)
