Stefanie Joho - Lunch Keynote Speaker at A Woman's Journey Baltimore 2017
I'm 27 years old at the age of 24 my oncologist sent me home to die. I'm still standing here today, so how exactly did we get here? (clapping) Thank you. Thank you.
At the age of 22 I had just graduated from NYU and had not been feeling completely like myself. I chalked it all up to the usual stresses of being a recent college graduate but to my surprise, when I went to my physician for an annual physical, a blood test showed that I was actually dangerously anemic. Knowing my family's history of Lynch syndrome, a hereditary disorder that significantly raises the risk of certain cancers, my doctor ordered a colonoscopy.
I need you all to understand that at that moment I thought this was the most absurd thing in the world. Here I was at 22, what I thought as the ultimate picture of health, albeit a bit fatigued at times and my doctor orders a procedure usually reserved for those in their late 50s. I thought so little of it in fact that I postponed my colonoscopy by one week, the day my parents would be on a plane to Australia for what they were calling their second honeymoon. The gastroenterologist who performs the procedure was equally as puzzled to see me. What are you doing here, he asked in complete shock.
Most patients lying in this bed are three times your age. I drifted off to sleep expecting to wake up to a smiling doctor and shortly afterwards be on my way to all the lower East side events that I planned with friends for the evening. What I awoke to though was a doctor who looked like he had just seen a ghost. You're gonna want to tell your parents to come home right away he said. Cancer. Colon cancer. He sent me immediately to get a CAT scan, all of us praying that it had not yet spread to my liver or elsewhere.
What I learned a few days later from my surgeon was that if I had waited even one or two weeks more, this conversation would have been an entirely different one. In fact, there would have been no time for a conversation at all as a large mass was centimeters from obstructing my colon wall. At very best I'd live the rest of my life with a colocolostomy bag and at worse it would have been too late. I underwent a long, brutal surgical removal and rebuilding of my intestines, a subtotal colectomy that left me with extensively no colon taking months for my body to adapt. Later, my oncologist would tell me that he thought I had dodged this tumor bullet and I would just have to be under very strict surveillance for the next few years. Since my lymph nodes had all come back negative further treatment wasn't recommended. Unfortunately as these stories too often seem to go, things would not prove to be so simple. 11 months later I was on an operating table once again, this time for a mass that was growing quickly invading my abdomen and choking off one of my body's major blood vessels.
Surgery led to severe complications and Christmas Eve and New Year's were spent in the hospital. My oncologist was blunt. You now have stage four metastatic disease. If there are still microscopic cancer cells in you I cannot guarantee that the next reoccurrence will be operable. The situation is black and white.
You need chemotherapy. Cancer and chronic illness in general has a way of making one feel hopeless, powerless even. I remember looking at my mom's face when she heard the oncologist say the word chemotherapy.
Her face got small, defeated, like gravity had suddenly taken a greater toll on her. Only 10 years earlier my mom's own cancer journey began, colon cancer, then uterine, each followed by chemotherapy. She immediately got up to hug me, a tear streamed down her left cheek as she said I would give anything to take your place, sweetheart. I would do anything to take the pain away. Suddenly the stark white walls of the doctor's office felt unbearably oppressive.
This is the moment where I really see my journey beginning. Looking back now, I realize that if I were the same patient and person that I was when I was first diagnosed, the cancer and the system would have killed me. That patient was passive, not particularly involved and left every last thing up to others. That person wanted to go back to a superficial life without delving into the emotional, psychological and physical trauma that I was enduring.
What I was forced to learn quickly thereafter was that the only choice I had would be in how I reacted to all of this. I realized there was only one thing to do, I stopped being passive and became active. I began to learn everything that I possibly could. I wanted to learn whatever I could about Lynch syndrome, about metastatic cancer, about nutrition, about ways that I could help my own body. I wanted to learn most basically what was cancer? I read about other people's experiences, how they picked up the pieces when the world felt like it was entirely collapsing on top of them, how they dealt with this life-altering interruption.
Clearly this cancer was trying to tell me something bigger about its pathology and the only way to survive was to take hold of the reigns and find empowerment in myself wherever I could. I remember my younger sister Jessie coming in from college in Vermont of be there with me for my first chemotherapy infusion. We stayed up probably a little later than we should have that night, her telling me that everything was going to be okay, that we had each other, caressing my hair and telling me that I'd still be beautiful even when it all fell out. I remember walking into the chemo suite and everyone staring at me, all them giving that same grin that says without having to use any words at all welcome to the club that never you thought you'd join. Chemo was brutal. I remember my mom telling me that she'd watch the life leave my eyes as I sat in the chemo chair.
I felt that too every single time. Within weeks I could no longer recognize the person staring back at me in the mirror, hollow cheeked, sunken eyes, translucent yellowish skin, hair in clumps on the ground, hair everywhere except on my own head. But most painful of all were the discreet effects that came with being a cancer patient, the isolation, the friends who stopped checking in, the fear of dying before I even really had a chance to live. For a while I continued to go to work up until the point where I physically couldn't. I remember one day a coworker complaining about having to be in the office early for a meeting. The only thing I kept thinking was it's a privilege to be here, it's a privilege to feel well enough to go to work every day.
I'm not saying I didn't have horrible days where all I wanted to do was give up. I remember on so many occasions falling to the ground and curling up in fetal position screaming to my parents that I would die of pain and not of cancer. I remember looking in the mirror and not recognizing my reflection, sitting in the bathtub for hours on end stroking my belly begging my body to fight back but on those days, the days in which I wouldn't let anyone open the blinds in my bedroom because I was in too much pain, too nauseated to open my eyes, my family would lend me their will to live. The spark in their eyes would somehow rekindle the dwindling flame that was still somewhere in me. Caregivers are equally survivors of any disease. They are the heroes behind any difficult journey.
All too often I would lie in bed thinking that this was even harder for my parents to see, for my sisters to witness. They were the ones who had to despite all rationality keep forging through, transmitting hope to me even on the days on which they too were tired themselves. The things my loved ones and caregivers did for me amazes me until this day. I'd regularly wake up to the sound of the juicer as my eldest sister Ursula would be piling in every vegetable under the sun.
My mother buying special lotions to massage my back, hearing her nearly out of breath as she tried so hard to take my back pain away. Jessie coming down from Vermont long weekend after long weekend during her last semester of college to watch movies in hopes of finding one that might make me smile. My sister Vanessa drawing me candlelit bubble baths with soothing yoga music in the background. I remember my dad venturing into some obscure store in China Town to get the very peculiar-looking fruit that he had heard had healing properties. My friends who would bring the most comforting and thoughtful of gifts to me, staying up with me until I fell asleep, filling me in on all the latest useful gossip so I could try to feel a semblance of my former, normal early 20's life.
Sadly, preventative chemo would not be the end. A scan in April of 2014 showed that the cancer had come back in my abdomen. Now entirely inoperable. Months of a more aggressive chemotherapy regime would only aggravate my body more and the tumor was growing rapidly now feeding off my mesenteric vessel, the most critical vessel in your digestive system. Inevitably the day came. My oncologist looked at me and my family and said I'm sorry but there's nothing left that we can do for you. The cab ride home was complete silence.
The taxi driver decided to take us through the ultimate chaos of Times Square in New York and I just remember thinking wow, all of this life and energy around me and here I am dying. In spite of our valiant effort, I though it might now be my time to go. When you hear those words and in the condition that I was in, I admit, I was ready to give up. Thankfully my family was far from ready. My little sister Jessie got home and scoured the internet. She refused to accept that this was the end. She started plugging in buzzwords that we had heard about the components of my disease including MSI, micro satellite instability until she came upon a trial that had recently opened up at Johns Hopkins. She walked into my pitch black room with her laptop and said Stef, I think I found it.
I think I found the trial that will save your life. A few days later we were sitting in the surgeon's office in New York as we were about to be told that he could not operate because even with over 20 surgeons and specialists in the room I would have at best a two to five percent chance of making it off of the operating table. I received the call that would save my life. I looked down at my phone. It was a 401 area code. Big eyed for the first time in a long time I asked my mom, should I answer the phone? I think it's someone calling from Baltimore. Of course you should answer she said with an enthusiasm that I had not heard from her in quite some time too.
What I didn't know before I answered the call was that on the other end would be my lifeline, Dr. Louise Diaz sounding both excited and stern all at the same time said to me Stephanie, you need to get down here as fast as you can. We've been having tremendous success with patients like yourself. The timing of things is what gets me every single time I tell my story. Better yet, every single day when I open my eyes and realize that I am in fact still alive and this has not all been a dream. Dr. Louise Diaz and my other Hopkins oncologist, Dr. Young Lee had just opened a clinical trial testing a hypothesis that a specific genetic marker would be predictive of a patient's response to a type of immunotherapy called checkpoint inhibitors.
It was in its very early stages that they were thought they up to something big. We got to Hopkins as quickly as we could. I recall walking into the Sidney Kimmel Comprehensive Cancer Center and feeling something different, the energy was different, the buildings were filled with so much life and for the first time it felt like my family and I could breathe again.
August seventh, 2014. I'll never forget this day. My first immunotherapy treatment. A few days after that first infusion I started to feel a little different. I couldn't quite grasp what is was but something was definitely happening.
Eight days after my first infusion, I was admitted to the emergency room. My heart beating out of my chest, unable to swallow food, nauseated to a degree I have never felt before, all I kept thinking was I'm dying. The last chance I had, the last thing that could have saved my life is killing me, this is how I go. Doctors at this ER were equally as puzzled. They didn't have much experience in immunotherapy side effects so they told me that this could possibly be because of the new treatment that I was receiving in the clinical trial.
Days later I would come to learn that the excruciating experience that I endured in the ER was in fact not at all an adverse side effect of the immunotherapy but actually textbook withdrawal symptoms from all of the pain meds that I was on, symptoms that the ER doctors didn't recognize. Within days of my first treatment I started feeling some sense of relief from my relentless and debilitating back pain, something I hadn't felt in over a year. It wasn't such a drastic change that I stopped taking all of my opiates, however, looking back now I realized that I had forgot to replace the Fentanyl pain medicine patch simply because by then I didn't need it. What's incredible about that part of my journey is understanding that my body, my own immune system was ready to go. My T cells, the attackers of the immune system were waiting around in the tumor when the brakes came off with this treatment, they saw the cancer and attacked and attacked fast. The first few weeks of the clinical trial weren't exactly a walk in the park. I developed hyperthyroidism and other side effects that left me fatigued to the paint where I couldn't get out of bed but then after about a month and a half something miraculous happened.
I sat down at the dinner table and looked down at the plate in front of me and started to cry. I realized that for the first time and I couldn't remember how long I felt hunger. Tears streamed down my face as I started to understand what this meant. My body which had been on the front lines of battle for years just trying to survive now had the energy and desire for a basic human function, to eat. Within three months of that first treatment I had another CAT scan to see if I was responding.
My mother, my sisters, Vanessa and Jessie came to that appointment with me. While I knew something had to be working since I was feeling more like myself, this was still the moment of truth. I'll never forget going into see Dr. Lee for that appointment. She could barely contain her excitement and within 60 seconds of us walking in the room she told us that the tumor had shrunk by 65%. Yeah.
The tumor that was inoperable and resistant to any other form of intervention was now responding and responding remarkably. Within 15 months of my first treatment the scans showed no evidence of disease. (clapping) That was over two years ago today. (clapping) Thank you. Thank you. The other day I received a message from the director of the Bloomberg-Kimmel Institute for Cancer Immunotherapy, Dr. Drew Pardoll who has throughout this entire journey become one of my dearest friends and partners in this battle. The text read, Stef, thought you would enjoy this.
I found out that one of the Bloomberg School of Public Health students has the following words written on her whiteboard. Today is a beautiful day to start curing cancer a million Stefanies at a time. (clapping) This phrase is now what gets me out of bed every single morning because today a disease that should have killed me has instead ignited my greatest passion and mission. I was saved because of a connection to others who are vigorously asking questions and challenging every paradigm as we have known it. Now, I try to connect to others to encourage them to both ask questions and seek answers. I share my story not only to be an embodiment of that hope but to convey the importance of self-advocacy.
What is self-advocacy exactly? It's being involved in the decision-making process. It's being engaged, it's understanding your options, it's being a central force in your care and an expert in your disease learning everything you can, asking all the questions you wanna ask and never being concerned about being a bother to your doctor. This is your life. (clapping) It's about creating the healthcare team that you deserve, a team that collaborates with each other and with you, one that includes you in every aspect of the decision making and is not afraid to think outside of the box when there may be a better way. It's one that listens to the words that you say and chooses carefully the words that they say.
It's a team that cares. Self-advocacy means surrounding yourselves with caregivers who will be there to remind you when it all feels to be too much, that the fight is worth it. It's empowering yourselves in every way you humanly can because sometimes the impossible can become reality. Just as immunotherapy is a story of pioneers who have persevered, who didn't abandon what they deeply believed in despite of all criticism, that's what it takes throughout our own journeys. As our own advocates and for the caregivers around us, it's always important to be realistic but give it everything you have. I would never had found Dr. Diaz, Dr, Lee, Hopkins and this clinical trial has it not been for my self-advocacy and for the advocates surrounding me.
I would not be here today were it not for my little sister who was my voice when I no longer had one. What I can tell you about a health journey is this, it will entirely infiltrate every inch of your being, every aspect of life as you know it, all the things that constitute your identity come into question, your relationships, your perspective, your profession, every aspect of how you exist or not and simply the way that you walk through the world. What I didn't really understand in the beginning is that after an experience like this, you basically have to take your old life and tuck it away. It will always be a part of who you are but unless you can see it as a part of why you arrived at this place, it'll be the end.
What I've come to understand, however, is that what you think might be the end of the world could in fact be the beginning. Rediscovering myself and the countless ways in which I've changed has been an indescribably rewarding and healing process in this journey. I've often struggled to figure out how to express my gratitude for this period of my life and I realize it's because all I could every possibly say is thank you.
Thank you, Johns Hopkins and the Bloomberg-Kimmel Institute for Cancer Immunotherapy for taking me on when I was deemed incurable, for treating me like a human being and never just a patient, for being relentless pioneers in a treatment that will continue to save so many live. Thank you to all the researchers, research coordinators, physicians assistants, nurse practitioners, lobotomists, pathologists, radiologists, social workers, patient navigators. None of this is possible without all of your brilliance and collaboration. Thank you to the nurses who are the heart and soul of medicine and the real heroes of this world. (clapping) Thank you. To all the brilliant rockstar scientists and human beings who have come into this place every single day and make a difference, Doctors Louise Diaz, Young Lee, Drew Pardoll, Suzanne Topalian, Liz Jaffee, Bert Vogelstein and so many others, thank you for dedicating your lives to using these scientific revelations to relieve human suffering. It has been my greatest honor to be a small part of the research that will forever change the face of this horrid disease.
To my incredible family and friends, thank you for being the brightest light during the darkest of days. I would not be here today if it weren't for you. One of the things that I want to leave you with today is that your health journey will undoubtedly be different from mine. Your journey is yours and yours alone. Nobody can take that away from you.
Believe in your own power and find the north star that keeps you going one day at a time. In the wise words of my beautiful little sister and tireless ally, Jessie, being brave is not about being fearless, it is about being scared and soldiering through it anyway for the things that matter. Your health matters, your loved ones matter, you matter. Thank you so very much.
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