"You'll never catch me dying": living with stage four cancer. | Jen Sotham | TEDxVeniceBeach

what was Venice Beach before it's December of 2014 I'm sitting in a doctor's office in Busan South Korea and my oncologist tells me through the hospital translator that my melanoma has metastasized to my breast and my lung my cancer has progressed to stage four he briefly outlines my limited treatment options and then he tells me that really the best thing I could do is to go home to New York I could tell by the way he's looking at me that he's thinking dead man walking or my case dead woman flying I have a great job teaching at a university with four months of paid vacation I have a suite apartment overlooking the coast I'm the food and culture editor of a local magazine and I play in a rock and roll band I have cultivated my dream life and the last thing I want to do is jump ship but he's right in New York I will have better options I will have more resources and I need doctors that speak my native language because I need to comprehend fully what's going on and I need to properly advocate for myself that night I go home and I do my am I gonna die Google search and I learn that the average survival for metastatic melanoma is between 6 and 12 months the more I click the more hopeless I feel basically the entire internet tells me that I'm and this is the real reason that I need to go home if my end is near then I need to spend the time I have left with my family a few weeks later I'm sitting in a different doctor's office and I meet my new oncologist Melissa Wilson and she tells me there is hope there are options good ones I'm a great candidate for a brand new immunotherapy combination using a drug that was FDA approved just three weeks before my diagnosis she promises that if we ever get to the point where we've run out of options she'll tell me to get my ducks in a row I take a moment to absorb what she said and then I ask the million dollar question so I'm not dying no Jenn you're not dying after four months on immunotherapy drugs I have what they call a complete response the drugs have worked and my cancer is gone scan after scan shows no evidence of disease I undergo more immunotherapy treatments I'm mourning my life in Korea but I am too paralyzed to move forward because all the while I'm waiting for the other shoe to drop but the more clean scans I get the more I start to come alive again and do normal things I join a film collective in Brooklyn I start to swipe right on tinder then I arrive at what is to be my last day in treatment and the other shoe does drop if all had gone well I was gonna be one year cancer-free instead my oncologist dr. Wilson tells me that I have four new tumors in my stomach and my small intestine my cancer is back and it is bad when something awful happens we ask why me and we mean this as what did I do to deserve this but I think that we're asking this question what's the wrong intention and I think we're asking it at the wrong time when something disastrous happens in our lives we need to go through all of these processes we have the cognitive process the logistical process the emotional process and if we could come out the other end of tragedy or adjust to something like in this and still remain healthy and whole maybe this is when we need to not only ask the question why me but answer the question why me how can I take this horrible experience and teach other people how to live through it for me my personal answer to why me was writing one of the things I did during my last days in Korea was to start a blog to keep people informed so I wouldn't have to answer hundreds of individual messages and so that I didn't have to have 20 different versions of the same conversation every day and during those first few months in New York my blog focused on the facts and figures but the longer I spent living with cancer the more I began to dig deeper and also reach a wider audience last New Year's Eve I received an email from a woman I didn't know her husband had been diagnosed with melanoma the previous day they had just spent the last several hours poring through every entry of my blog in separate rooms on different computers and she was writing to tell me that after reading my words they felt less afraid and more prepared and I cried answering the why me doesn't have to mean sharing through writing or art it can be participating in an advocacy group or sharing your experience in some kind of support setting or it might just be the way you choose to live your life each day I have a very close friend who lost her son and then very soon after her husband of many years and just the fact that she was able to pick herself up off the ground and put one foot in front of the other taught me something very important when you're alive you live people often ask me how I stay so productive and positive in the face of my grim prognosis and the truth is I don't always stay positive people see what I let them see and I've become really good at putting on my game face and making jokes at my answers expense but there are plenty of days weeks when I feel sad and scared and angry and all I can do is cry cancer is a bummer I have a gut full of tumors treatment has taken a toll both on my body and my quality of life every time I start a new treatment I have to adjust to the new often brutal side-effects I've been hospitalized several times I require frequent blood transfusions and you do not know true humiliation until you have puked and peed on a hot male nurse I live from scan to scan it's like living between parentheses where every three months I get to find out if I'm gonna live or die I will never have children I don't date because I would never drag another human being into the muck of my illness so no I'm not always able to stay positive but I am able to stay in me I have to you don't get cancer and just become a different person when I got cancer I found out what I was made of and if there's ever a time to be true to myself it's now am i hopeful yes because I am aware of the very real and rapid strides that are being made in cancer treatment every day I am in the first the first generation of advanced melanoma patients for whom this disease might not be a death sentence because I was diagnosed during what I like to call the Renaissance of cancer treatment there may not be a cure for cancer but there are many cures because each cancer is as unique as the person who hosts it and if the treatments that exist now can keep me alive long enough then maybe my cure is coming down the pipeline as I speak or perhaps it's coursing through my veins I'm on a clinical trial there's no published data I am the data for every medical breakthrough that's ever happened when there's a true fix someone's got to be the first to get it and this is where I have to ask why not me as for what gets me out of bed every morning and keeps me planting seeds the way I see it there are three roads ahead of me there's this one road that's a dead end quite literally on this road I get sick and I die then there's this middle road that's kind of a continuation of the road I'm on now where I can live somewhat of a normal life but I am tethered to constant medical intervention and then there's this third road where I fully respond to some treatment and that response has longevity I call this the why not me road with the first road there's not much I can do yeah there are some logistics to figure out what I want the end of my life to look like where I want my ashes to be sprinkled who gets my guitar and the rights to my screenplays and the privilege of snuggling with my amazing dog Oscar every night but I've already asked and answered the hard questions I've already pondered my mortality those other two roads they represent life no matter how long and so the thing that gets me out of bed every morning that keeps me investing in relationships that urges me to work towards my career goals is that on those two roads exists the future so I need to live in the now in a way that bends that potential future towards the same fulfillment and self-actualization that all of us seek since my recurrence a year and a half ago I've been on five different types of treatment each begets some partial response or keeps me stable for a while and then my cancer progresses and we need to find a new treatment I am like a walking science experiment because I live with the knowledge that my end may be imminent I savor myself like one might an exquisite meal we talk a lot about the burdens of cancer but cancer has delivered me many gifts not only are hundreds of thousands of people reading my words but writing about cancer is the most rewarding writing I've ever done because it's the most honest writing I've ever done having stage 4 cancer has freed me of the fear of judgment we live in a world where it's perfectly acceptable to self deprecated but it's considered in poor taste to self appreciate outloud we fish for affirmation by saying things like oh I'm not very good at that when we are very good at that I don't understand why if you have a particular talent or aptitude it's not okay to acknowledge it living with cancer allows me to embrace and verbalize the things about me that makes me so special it's made me hyper aware of the gifts that I have to give both my loved ones and the world at large I don't fear death itself I fear the gaping hole that my death will leave in the lives of those who need me I fear that my voice will be extinguished before I've had the chance to have my proper say I've stopped asking why me instead each day that I'm here I just give the gift of me as fully and freely as I am able this disease might kill me but you will never ever catch me dying [Applause]

Channel: TEDx Talks

Views: 266,477

Keywords: TEDxTalks, English, Health, Cancer, Creativity, Death, Hardship, Identity, Life, Motivation, Writing

Id: IrEhwsk1PDo

Length: 12min 38sec (758 seconds)

Published: Fri Jun 01 2018