as you may recall from one of my earliest blogs, i had always envisioned drug infusions as a bunch of cancer patients in a circle of recliners, all hooked up to iv’s, perhaps crocheting, or engaging in, like, a book club or something. this is not the case. i totally get ‘hippa’ laws and the need for patient confidentiality, but i find it really odd that we, the patients, are kept totally isolated from one another. i mean, yeah, we can go to support groups… which would likely be kind of a mixed bag of people with all different kinds of cancer, on different kinds of treatment, with different burdens of disease and with different prognoses.
in my last blog post, i briefly mentioned that i was setting out to make a documentary film about my journey with melanoma, or, to put it more accurately, about the impact that recent advances in immunotherapy have had on the lives of patients. as a result of this project, i’ve had the good fortune to interact with a few other metastatic melanoma patients who have been receiving the same drug combination i’m being treated with (ipilimumab+nivolumab). these are probably the only people on the planet who can 100% relate to the emotional turbulence that i have experienced… who can understand what it’s like to be told, essentially, that you’re probably going to die within a year and then, several months later, be told that you’re fine… for now… and possibly forever… but we’re not sure, because there’s really no long term data – because we ARE the data. it’s been a bit of a mindfuck, to say the least.
one of the things that has come up a few times in conversations with my cancer cohorts is how commonly we are hero-ized, and how uncomfortable that is. here’s the thing… people who have cancer need their cheerleaders. we do. it’s amazing to have support and encouragement. there have even been studies that indicate that those with strong support systems have better survival rates. and i’m perfectly ok with the people who love me saying i’m inspiring because i’ve handled all of this cancer bullshit with grace, with my head held high, by using my voice to advocate for those in similar circumstances. what causes my discomfort is being told that i’m someone’s hero because i ‘beat’ cancer. i did NOT beat cancer. all i have really done is stick my arm out, so that a needle can be inserted to deliver the drugs.
i’m writing from san francisco, where i’ve traveled for the purpose of filming interviews at the society for melanoma research (SMR) annual congress. initially, when i reached out to the coordinator of this conference asking for permission to film here, i received an immediate response to my email, basically saying no… the conference does not allow filming (which i later learned is because a lot of what is being presented in these sessions is research that has yet to be published). about an hour later, i received another email saying that, after some more thought, she decided it was worth looking into. three weeks later, i found myself on a phone call with the president of the SMR, which ended with, not only permission to attend the conference with a film crew, but also an offer to broker introductions to some of the key researchers from around the world who would be in attendance. long story short(ish), here i am.
when i walked into the hotel where the conference is being held yesterday afternoon, the lobby was quite crowded with people, a majority of whom were clearly not doctors and researchers. but there were a few people who looked like they might be. and all of a sudden, i became overwhelmed with emotion, with complete and utter awe… i felt as i always imagined i would feel if i were at, let’s say, the academy awards, completely star struck. i felt the urge to grab the people around me and shake them by the shoulders and shout, “do you even know the level of greatness that is about to fill this hotel? do you realize that these are the people who are fucking curing cancer?!?!?”
in the past 24 hours, i have had the opportunity to interact with and interview people who, in my world, are absolute rock stars (some literally – as i learned that several of the top immunology researchers in the country have formed a rock and roll band called ‘the checkpoints’ and i’m trying to convince them that they need a token cancer patient in their band). in the sessions themselves, a lot of the super sciency stuff has gone over my head. fortunately, i’ve had my personal champion, dr. wilson, by my side, whispering explanations of how some of the facts and figures pertain to my disease and my treatment. i’m not going to go into specifics about all that i’ve learned about immunology and the future of cancer treatment in just under a day, because as fascinating as it is to me, it would likely bore most of you to tears (except for you, april… you’d get a total science boner!). but i will say this…
a few weeks from now will mark one year since i was diagnosed with stage IV metastatic melanoma. before these new drugs, the average life expectancy for this diagnosis was 6-12 months. without the innovation and perseverance of these amazing doctors and researchers i am surrounded by, there’s a good chance i’d be dead or dying right now. so next time you’re inclined to raise a glass to me, to my health… instead, raise a glass to them. they are the true heroes in this story.