How I Give Cancer Purpose
I've often said to my kids ...... "Many times we do not have control over what life presents us but we DO have control of how we look at it". The road of cancer is a difficult one for SO many reasons but, for me, many amazing things have come from it as well. It has given me a greater awareness of my body and the importance of my relationship with it. It has given me the opportunity to have beautiful, frank, difficult conversations with my children, husband, friends and even strangers. It has given me a new lens through which I look at the world, both big and small. It has given me an awareness of the importance of research and science. It has given me the opportunity to raise funds for my Stanford team and support them just as much as they have supported me. It has given me the opportunity to touch the lives of thousands of cancer patients and their families by taking part in clinical research trials and having those treatments become available to the public. (That is a big WOW for me and makes me super proud!) Finally, it has allowed me the space to contemplate both death and dying which ultimately has allowed me the space to live louder, freer and more purposefully .
My Story
My name is Jen Varela. I am a mom of 5 beautiful children. I have been married to an incredible man for 26 years enduring many ups and downs together. I am a previous flight instructor. I am both an IronMan and 2 x 29029 finisher. I am also a cancer fighter. I have a form of non-hodgkins T-cell Lymphoma called Sezary Syndrome… a form of Cutaneous Lymphoma. It is rare. It is incurable. It is also hard to diagnose because it mimicks many other conditions . Its treatments tend to be a “hit or miss” because scientifically, the cancer expresses itself uniquely to each patient. Finally, it is a cancer that is relentlessly in your face because it affects your skin, the largest organ of your body.
After first being misdiagnosed for 2 years and then trying at least 7 different drugs/treatments, I had the blessing of being on a clinical trial for an immunatherapy drug called Mogamulizumab. Moga gave me “normalcy” for a good 7 years until 2023 when I noticed my skin changing. The cancer had finally figured a way around my immune system. However, those 7 years not only gave me time of leading a normal life, it gave time for the researchers to come up with new novel treatments AND ways to understand the targets so it’s no longer as much of a “hit or miss approach”.
Now my story leads me to this: Because of the advancements of science and my INCREDIBLE team at Stanford, I have the honor to once again be at the hands of another clinical trial. Before I was patient 12 on a Phase III trial… this time I’m embarking on a new journey of being patient 1 on a Phase I trial. I’d love to share this journey with you. To continue to give my cancer purpose and meaning. Without science and research I would probably not be here with you today. Most people have no idea what goes into clinical trials and it would be an honor for me to hold the space for all of us to learn.