A few days before Christmas and my 45th birthday, I lost my voice after a few weeks of a dry cough. I really didn't think anything of it, considering how many viruses are going around. But I kept in touch with my doctor, who ordered a chest x-ray to look for pneumonia. So while John was having knee surgery, I decided to be efficient and run down to Radiology for my x-ray. Unfortunately, it wasn't pneumonia or a virus causing my symptoms. I have stage 4 non-small-cell lung cancer (NSCLC). It has spread to my lymph nodes, bones, spine, and brain. Because of how widespread it is, a cure is not in the cards at this time. We are devastated.

But it isn't all bad. I have an "ALK rearrangement" (genetic mutation), which is what my doctors had hoped for and expected since I'm a young, non-smoker. I had incredibly shitty luck to have my body rebel like this and allow this cancer to grow, but good luck that this flavor of NSCLC buys the most time because it has a well-tolerated and effective treatment regimen. Each day at 4pm I take 75mg of Lorbrena (oral medication), complete with a family ritual of everyone pouring their love and intentions into my medication. I started treatment immediately, thanks to my incredible care team and connections at Penn. 

Lorbrena is a tyrosine kinase inhibitor (TKI) targeted therapy, which can slow, stop, or sometimes even reverse (!) cancer progression by essentially controlling the cancer's "on/off" switch. The effectiveness of TKI's and their availability is incredible, considering that ALK-positive lung cancer was only discovered in 2007. Thank you, science! Unfortunately, they do not work indefinitely. At some point, the cancer mutates to take control of the switch again, so patients need either the next generation TKI (Lorbrena is the 4^th gen) or to turn to less-effective traditional therapies such as chemo, radiation & immunotherapy. I am not being dramatic when I say that my life depends on continued research funding and drug development, which is scary (hard stop, but also) within the context of the current administration's deep budget cuts. 

I am so deeply appreciative of the outpouring of love and support and do a daily meditation to funnel all of that energy and positivity into my healing and into the effectiveness of my treatment (so please keep it coming!). Because I have surrounded myself with wonderful humans, I am often asked "how can I help?" What I need most in life, the only thing I need, is to max out how much time I am given the privilege to raise Andrew with John. Continued research to develop the next generation TKI, or even better a novel cure, is what will give that to me. And so my quest to help ALK Positive raise money for critical scientific research begins.

If you'd like to follow my health journey, please visit my Caring Bridge site. I'll post updates there. With love, Jen