I come from resilient people. My maternal ancestors were forced out of Nova Scotia as part of Le Grand Derangement, when the British “shipped our Acadian ancestors down here to die,” as my mother used to say.
She wasn’t wrong. Le Grand Derangement was an act of ethnic cleansing, a genocide. It’s estimated that half of the Acadians who were forced onto boats out of their homes died. Louisiana and its abundant swamps were likely not the easiest place to make home at first.
But just like the fertile soil of my homeland, they survived.
I guess you could say I dug deep into my roots and survived too. To know where you’re going, you have to look back at where you’ve been, right? The irony is not lost on me that the same genetics that gave me my beloved Cajun French heritage coursing through my veins also gave me the mutation that led to me fighting for my life.
My first post-Cabo scans came back clear. I’m still declared “no evidence of disease,” which means…remission.
No, the British didn’t try to kill me, but cancer sure the hell did. And just like my ancestors, I’m raising my fist and shaking it at the beast. You tried to kill me, but you didn’t win.
But about that looking back…let’s do that for a moment, shall we?
When I was diagnosed May 10, 2016, I was in shock at first. I worried I would die. Then I became quite naïve. I couldn’t wrap my head around the severity of my diagnosis. The weight of it was too heavy for me to comprehend.
Surgery came almost a month later, on June 8. Reading my surgery notes, it was more complicated than my world renowned surgeons could have anticipated before they opened me up. Five and a half hours on the table, they removed organ after organ, piece after piece, trying to take out every traitorous mark of cancer. I spent ten days at UCLA with round after round of curious residents, students and doctors looking me over, asking me questions, commenting with very puzzled, intrigued faces as to how “remarkable” my case was.
Not the good kind of “remarkable,” if you were wondering.
I was slightly hopeful after my surgery, thinking maybe they had gotten it all. But no, kidney cancer was not done with me yet. I sobbed as the oncologist came breezing into my room that August, casually throwing out, “Well, your cancer’s back.”
It wasn’t just back. It was dire – it had taken over the lymph nodes in my chest and near my heart; it had grown onto my liver and in the bed left behind from where my right kidney had been. It had grown into my lungs, even growing what’s known as a tumor emboli. Imagine my horror as I Googled “tumor emboli” from the back of the Uber bringing us to LAX and reading that it “occurs in end-stage cancer and AIDS patients.”
When I met with Dr. V a couple of weeks later, joining a clinical trial seemed rational. I didn’t feel heroic or martyr-like doing it – my main motivation was to survive, obviously. I knew my cancer was aggressive and that what was on the market would not likely work for me. I had also mostly sacrificed hope at this point, figured I would probably die within the year, and I hoped that by studying me, I could at least be of some use to the patients to come behind me, that researchers could find some answers. When I was assigned Cabometyx, Dr. V was thrilled, pumping his fist in the air when the research nurse announced which drug I’d been assigned by the computer. He had told me before that he felt Cabo was going to be my best shot.
Neither of us anticipated that four years later, I would be writing this post, saying I had a complete response to Cabometyx.
I still smile to myself when I think of when he walked into the exam room where Patrick and I were anxiously waiting for my first scan results three months after I started Cabo. I had convinced myself that I would be happy with being stable, and thrilled with a 25 percent reduction in my tumor burden.
Dr. V walked in with a cheeky grin: “80 percent.”
“What?!” I couldn’t even process it.
“EIGHTY percent reduction in your tumor burden.”
That’s the day I jumped up and tackled my oncologist with a hug.
Seven months later, they declared me “no evidence of disease.” And by God, I’ve stayed that way ever since, even after stopping Cabo in April.
It’s why I get frustrated when people decry “Big Pharma.” Big Pharma saved my life. Doctors and researchers saved my life. Not just that, but they gave me my life back. Cabometyx made it possible for me to breathe again, to send my daughters off to their homecoming dances, to dance the night away at concerts. Cabometyx made it possible for me to force Patrick to take this picture of me on the beaches of….Cabo.
I couldn’t resist the pun of it. Do you know me at all?
In all seriousness, even as I sit today, four months after stopping Cabo, I know Cabo is why I’m in remission. Did it put me through hell? Absolutely. My thyroid and circulation will probably never be the same. My hair changed color and thinned out, and I bought enough Imodium that I should own stock in Johnson & Johnson. But did it give me a chance to live again? Yes. I would do it all over again in a heartbeat for that chance.
When I think of “Big Pharma” and the “business” of oncology, I don’t think of what most Americans think of. I think of Exelixis, the pharmaceutical company who overnighted my mother Cabometyx, who was on standby, ready to send it before her oncologist even had the chance to write the script just because I asked. I think of the nurses who hugged me and cried with me my first appointment after she died. I think of the oncologists and the researchers I have reviewed grants with, who had clearly devoted their entire lives at the expense of their families and personal time to finding a cure for a disease that would likely never touch them personally. I think of Dr. V, who framed my Christmas card one year because I thanked him for giving me the chance to see my daughters graduate from high school. I don’t think cynically about Big Pharma and oncology. I think about the people and the science that has kept me alive. That’s why I’m here today.
The little yellow pills aren’t my daily reminders to stay humble anymore. It’s been replaced by looking in the mirror every night at my scar. I won’t ever be able to forget cancer. Even without the scar, I have scans every four months now. I’ll always have surveillance scans. I’ll always have side effects and the PTSD. With any luck, that’s all I’ll have. Cabo will be waiting for me if the cancer comes back for me, which is still a very real possibility.
But for now, Ça c’est bon, sha…
It’s all good, my dear. It’s all good.
singlewhitekidney 