A Letter to all of the doctors that misdiagnosed me:
It’s officially been one year since I went into respiratory failure. One year since I was diagnosed with Stage 4B Hodgkin’s Lymphoma. One year since not only my life changed, but the lives of all of my friends and family changed. One year since I woke up in the ICU, after being transferred to Sylvester Comprehensive Cancer Center, to Dr. Izidore Lossos, who essentially saved my life. One year since I spent the majority of my 2016 undergoing salvage chemotherapy and radiation. One year since cancer was in every organ in my body, and I had absolutely no idea, and neither did you. The photograph below, is probably how you will remember me. That is what I used to look like. Now, when I look at myself in the mirror, sometimes, I don’t even know who I’m looking at.
I had no idea that I had Hodgkin’s Lymphoma, because I was misdiagnosed. Misdiagnosed by professionals that went to medical school to treat people, to help people, to save people. For about 2.5 years, I was misdiagnosed by about 9 medical professionals, ranging from PCP’s, Allergists, ENT’s, Gastroenterologists, OBGYN’S, and even the final doctor that I saw at urgent care, the day I was admitted to the hospital, who told me that I had kidney stones. I don’t think he even bothered to look at my white blood cell count. I don’t think he even cared. I think he just wanted to go home, because it was late. If my mother didn’t make me go to the ER, I would have hopped on a flight to Vegas the next day. I would have been dead. I could have died, and it’s all because of the multiple, trained physicians, who failed to put together every single symptom that I had of Hodgkin’s Lymphoma. Every single symptom. They failed to run a blood test. They failed to order me the proper scans. They failed to listen to me. Because I looked healthy, like in the photo below.
I had a chronic cough for 2.5 years. I lost weight. I lost A LOT of weight. I had night sweats every night. I had pain in my abdomen that became unbearable. My lymph nodes in my neck and stomach were beyond swollen and the size of golf balls. I had golf ball sized lymph nodes under both of my arm pits. I had a rash all over my legs. These symptoms went on for years. I was told I had allergies, I had acid reflux, I was working out too hard and straining muscles in my stomach from Pilates, I was sweating at night from my metabolism. I told all of you all of my symptoms, but you didn’t listen. I was told my swollen lymph nodes underneath my arms were cysts that I had to get removed. It was misdiagnosis after misdiagnosis. Because of all of these physicians that didn’t take me, or my symptoms seriously, my cancer spread to every organ in my body. Every single organ.
Yes, I had Lymphoma for 2+ years without knowing, but it could have been staged earlier. I would have had time. It wouldn’t have spread to every organ in my body, if even one of you took my illness seriously. Don’t assume that just because I was “young”, meant that I was healthy. I was the complete opposite, but you didn’t listen. You didn’t take the time to listen to my symptoms. You were too busy trying to get me in and out of the room, so that you could see your next patient. I could have thought about fertility and freezing my eggs. I would have fought the disease either way, but that’s not the point. The point is that I would have had options. My only option was to start chemotherapy the day I was admitted to Sylvester, or die. Salvage chemotherapy, with a lot of side effects. BEACOPP is no joke. It was so bad, to the point where my doctor had to remove the Vincristine and Procarbazine during my last two cycles, because I couldn’t walk. I had to learn how to walk again. I can’t even explain to any of you medical professionals as a 29 year old, what that feels like. It’s heart breaking. I can’t even explain to you how traumatizing it was to go into respiratory failure, and have one quart of fluid drained from my lungs, and a port placed in me, and have to fight for my life, while everyone else lived theirs. I can’t explain to you how traumatizing the look on my mother’s face was, when my hair was falling out in clumps, while I would sit in the bathroom and cry. Or the look on her face when I had to sleep on my couch for months, with a bucket next to me.
I’m not mad at any of you for misdiagnosing me, I just feel that this letter is necessary, to make you as trained medical professionals UNDERSTAND why it is so important for you to LISTEN to your patients. I’m not mad at you, because I consider myself one of the lucky ones. After one hell of a year, I survived. I was lucky enough to be treated by the most amazing Hematologist in the entire world, who not only saved my life, but he changed it. I don’t want to hear that I was lucky because I had Hodgkin’s Lymphoma of all of the cancers. It was complete and utter hell, and I don’t wish what I had to go through on anyone.
There is no good cancer, period. Cancer is cancer. Chemotherapy and Radiation can cause side effects, including developing secondary cancers down the road. The chance of relapse is high with Stage 4 fighters. Every day I thank god for beating this and being in remission. I thank god for Dr. Lossos. I thank god that the Hematologists at Doctors Hospital couldn’t treat me, because I’m sorry, but they really didn’t seem to give two craps, and I’m honestly not even sure why they are in the specialty that they are in. My intention isn’t to be mean, it’s to be honest. It’s to help you understand, so that you all can be better medical professionals.
My intention is to tell you all that I am one of the lucky ones, I survived. Unfortunately, not all of your patients that you misdiagnose will survive. I only survived, because Dr. Lossos refused to give up on me. Even when my cancer became refractory, he had a plan. He told me that he would save me, and he followed through with his word. He saved me.
With all of this being said, I hope you learn to listen to your patients. Don’t brush them off just because they are young and appear to be healthy. Don’t brush them off because you have other patients to see. I understand your job is difficult, I work with doctors every day. But all you need to do is listen. Don’t just listen to reply, listen to understand.
Cancer changed me, and I turned a shitty situation into an outlet to spread awareness, and help other cancer fighters fight through their battle. It was the most difficult, most eye opening experience of my life, and I found strength in places that I didn’t know existed. I wouldn’t change this experience for anything, because I am who I am today because of this. I’m a stronger, wiser, more compassionate, and empathetic person because of all of this. I now understand the meaning of life, and how important it is to actually be present and live it. There will never be another day where I take my health, or any moment in life for granted. Without cancer, I don’t think I would have ever learned any of this.
I don’t want or expect anything from any of you, but I hope that I’m the patient that you won’t ever forget about. The patient that will make you order that extra blood test, that extra scan, the patient that makes you listen and figure out solutions for your other patients. Because unfortunately, sometimes it’s too late, and sometimes medicine can’t save us.
So thank you Dr. Lossos, for giving me another shot at life. And to the doctors that misdiagnosed me–because of you all, I am the strongest person that I will ever know. I am the strongest person that anyone will ever meet. I now know that I can go through hell and still survive. I’m a survivor. And that’s a trait that I will carry with me for the rest of my life.