“Hang on, hang on when all is shattered, when all your hope is gone. Who knows how long? There is a twilight, a nighttime and a dawn.” – Guster, “Hang On”
It was June 2016. I had just been released from a ten-day stay at UCLA after the most grueling surgery of my life. I was scared to leave the hospital. Wasn’t it safer just to stay inside?
My aunt Cindy decided to come back to Vegas with us to help Patrick out while I was recovering. I was barely able to move and in a horrific amount of pain, and we knew we’d need the help.
I spent a lot of those first few weeks after surgery sleeping, but I’d occasionally wake up and have some moments of clarity. The harsh, heavy reality of the situation was starting to settle in. After my diagnosis, we all had focused so acutely on getting me to surgery that there didn’t seem to be any time to process the wider implications of what was happening. This “cancer journey” was quickly becoming a marathon, not a sprint.
When she wasn’t visiting with the girls, Aunt Cindy would sometimes sit in the recliner by my makeshift hospital bed and read while I was sleeping. I think everyone was afraid to leave me alone, and rightfully so. My legs had swelled again to epic proportions in addition to the copious amounts of painkillers I was on, making it challenging for me to get up and use my walker. When I would wake up, we would talk, sometimes about nothing just to get our minds off of things, but sometimes we would talk about what all this meant.
“Maybe you’re meant to turn these lemons into lemonade, sweet girl. I know we can’t understand why now, but I bet you, we’ll figure out why one day,” she said.
Well, I think I’ve made that lemonade.
Three months after my surgery, in September 2016, I became the youngest patient to enroll in the SWOG S1500 trial, also known as PAPMET. Sponsored by SWOG Cancer Research Network, it is the first-ever completed randomized clinical trial for metastatic papillary kidney cancer (pRCC) patients. At the time, there was no standard of care for stage four pRCC patients like me.
147 patients participated in the trial. Only two of us had a complete response to treatment.
The trial was so successful that they have opened a new trial to compare Cabometyx with and without Tecentriq in metastatic pRCC patients.
My beloved Dr. V, who sadly passed away three weeks ago, was the first oncologist in the world to provide the commercial treatment of Tecentriq to a patient.
In September 2022, about thirty minutes after I found out Dr. V had passed away, I received a call asking me to interview with SWOG as their Kidney Cancer Patient Advocate for the genitourinary committee.
Dr. V always pushed me hard to keep up my advocacy work, and he served on the committee for over 14 years. So, I guess that’s why I wasn’t surprised on the timing.
I am humbled beyond belief to share that I am joining a group of such esteemed, well-accomplished and hard working patient advocates. As I told the interview panel, this is personal for me…
I literally would not be alive if it weren’t for SWOG’s research.
This is the wildest story arch I never could have anticipated or written myself: I’ve somehow gone from…
A patient taking an experimental treatment provided by SWOG, certain I was only doing so in order to better research and not to save my life…
To watching that once-experimental treatment become the first-line treatment for new patients because of the study I was on…
To now, assisting SWOG’s researchers and clinicians in ensuring the patient perspective is represented in tomorrow’s clinical trials.
And? Well, SWOG’s research may save my life again someday.
I cry sometimes when I think of how I wish I could tell 2016 Laura what 2022 Laura would be doing.
It may be bittersweet sometimes, but I am proud of the lemonade I have made.