Hi. I’m Jess. If you’re reading this, you’ve probably been following my journey for awhile. Everyone always asks me “my story”, because in a healthcare system that is designed to have doctors double book as many patients as possible, often leading to misdiagnoses and even death, I was one of the lucky patients. I was one of the very few that came out alive from the 4th floor ICU at my cancer center. Everyone knows that most people on the 4th floor enter but seldom exit. God blessed me with a doctor that refused to give up on me
But anyways, here’s my story. I wrote this exactly when it happened. While it was happening. It still gives me the chills rereading it, because it’s so surreal and it feels like at one point in my life, I was trapped in someone else’s body.
January 28th, 2016 is the day that my world turned upside down. I was 28 years old, living what I would call a pretty great life. I was at the height of my career, and one of the top reps in my division at my pharmaceutical company for the previous quarter. I was traveling every month, having a great time with friends, meeting new people, going out on the town all of the time, and so forth. I finally felt like I was established and had it all. Little did I know, life was about to smack me to the ground. Literally. And that’s exactly what it did.
So, here is the background info. I had been struggling with an annoying lingering cough for 2-3 years. 24/7 coughing. It wouldn’t go away. I went to multiple doctors, PCP’s, Allergists, ENT’s, GI doctors, you name it, I had been there. Originally, I was diagnosed with allergies. So I took allergy medication for about 1.5 to 2 years. The cough still wouldn’t go away. I remember my friends and coworkers telling me to go to different doctors because something wasn’t right. I dismissed this because after all, if you see 10 doctors and everyone is telling you the same thing, it’s not a big deal. They are probably right? Right? Wrong! So this was half of the problem. After one year of allergy meds, my allergist finally told me that she thought I might have something called Acid Reflux. She recommended going to an ENT to avoid having to get an Endoscopy. I met with two ENT’s who both told me that I definitely had reflux. They recommended a specific diet plan, which I followed, performed an exam to confirm that it was reflux, and prescribed me Omeprazole. They were also more focused on which dermatology products I carried and if they could get samples. The cough went away for a bit, but then it came back and got worse. I also started having horrible abdominal pain. It was so bad that one day I called my GI doctor multiple times, thinking maybe it was a side effect of the omemprazole. He said that I should probably see a GI and get an Endoscopy. It irks me to this day, how could you not put two and two together? I was coughing, my neck was ginormous, my lymph nodes were insanely swollen, and I had abdominal pain.
As November 2015 approached, my cough got worse. I remember being in Boston, visiting my best friends and I seriously could not stop coughing. I blamed it on going out the night before and being hungover. Maybe all of the alcohol was what was causing the cough, because if you have reflux, you’re not supposed to be drinking alcohol. When I got back to Miami, I met with two different GI doctors. They BOTH told me it was probably reflux, prescribed me omeprazole yet again at a higher strength for a few months, and set up an endoscopy. No one ever even bothered to order me a chest X-ray. I was coughing non-stop all day and night. So I was set up for my Endoscopy mid February, after I returned from my national sales meeting in Las Vegas. Mind you, yet again, this doctor was more concerned about his teenage son’s acne (I sold acne medication at the time) and hitting on me, than trying to figure out what was actually wrong with me.
The excruciating abdominal pain, back pain, night sweats, atopic dermatitis all over my legs became progressively worse. I went in to my my pcp for the pain and he told me it from “tearing a muscle” working out. He gave me a muscle relaxant and sent me on my way. I figured that I should probably see my OBGYN, in case it had anything to do with that area, since it felt like I was having period cramps. My OBGYN performed an Ultrasound, but everything was fine and I did not have any ovarian cysts or anything. The same was suggested– muscle tear. I struggled with this for months on and off, basically relying on Advil to get me through the days from the pain. I can’t even tell you how much advil I would take daily. I would also wake up at night drenched in sweat, being told it was just my metabolism from working out so hard. Little did I know, everything was about to blow up. I had to cancel my workouts during the week, I could barely stand. In January, I developed a giant lump underneath my arm. I immediately went to my PCP, who told me it was a cyst. A few days later, another one developed under my other arm. I didn’t think anything of it, because I heard that if you get a cyst under one arm, you can usually get one on the other too.
But no time to deal with all of this right now. I was getting ready to go to my national sales meeting in Vegas on January 30th. On January 28th, I was all packed and ready to head out early, but the pain that day was unbearable in my abdomen, and believe me..I have an extremely high pain tolerance. I can handle almost anything. I went to CVS during work and was living off of icy hot chill stick compresses, while trying to lug my sample bag into doctor’s offices and drop off samples. I could barely work until 11 a.m. I remember going home, sleeping for hours and having hot flashes. I felt so sick that I figured I should try to get muscle relaxants from what I thought was another horrible “muscle tear”. I went to urgent care. I sat there for a few hours, they told me it was probably a muscle tear. The doctor actually couldn’t wait to get the hell out of there. Then they told me I have kidney stones. Then they told me to go to the hospital if I had kidney stones. I immediatly called my mom. She’s an RN, has her Ph.D, etc etc. I went to the ER thinking okay, kidney stones. Hours of Waiting. Blood work. Scans. It was 1am and the doctor came in and told me that I needed to be admitted, get more scans, and see the specialists in the morning.
It’s funny the way memory works. The things you can’t remember, but the things that you can never quite forget. Like the look on the ER physician’s face that was absolutely blank. My white blood cell count was dangerously high, over 30,000 or something like that..and more tests needed to be run. I called my mom, who never freaks out. That’s when I knew something was wrong.
Jan 29th, 2016
Tests. All day. All night. My mom was on her way back home from visiting my sick grandmother in NY. As the day went on I became even more sick and in even more pain. I couldn’t breathe. CT scans. X-rays. Ultrasounds, Oxygen. My breathing got worse. I called my friends, my coworkers, even my manager and told him to cancel my Vegas trip. I wasn’t going to make it. I knew something was seriously wrong, but was in denial at the same time. My aunt passed away the previous year from Leukemia. It was like dejavu, being in the hospital with her before she passed. A few days later, I woke up to my best friend in my hospital room. She lives in LA and caught a red eye. I think that’s the moment I realized that something wasn’t right. I was pretty much sedated the entire time in the hospital. Living off of Dilaudid for the pain. My friends kept pouring in and out of the hospital. I finally met with two Oncologists who I was not a big fan of. One of them was such a prick and was even laughing at me at one point. They told me verbatim that I had an infection somewhere in my body, but said there was a slight chance it could be Lymphoma. Slight. Not to worry, more tests, probably an infection. Then the female doctor assured me that it was an infection. Then told me if it was Lymphoma, I should consider freezing my eggs because I might not be able to have kids. I’m sorry, what
The night they told me the news was probably the most horrifying night of my entire life. I had an pneumonia, sitting in my hospital bed crying, sweating, shaking, fever, and attached to oxygen. As the night approached, all I remember was shaking out of control. Whatever I felt that night is a feeling I’ll never forget. The feeling of physically dying. Or getting ready to die, and not one person listening to me. That night, I had to have the nurses change my clothes a total of 6 times while my friend sat in the hospital chair in my room, because I was soaking wet. They told me I had a fever and it was breaking. Night sweats. I kept telling the nurses that I couldn’t breathe even with the oxygen, but no one seemed to be listening to me. It was literally like I was screaming and no one would listen. They thought it was anxiety and gave me more Ativan.. which is absolutely bizarre, considering that would suppress my breathing even more. I really thought at that moment, that I was going to die, and that was it. I was actually preparing myself for it. That was a feeling that I will never forget. I just kept telling myself in my head, don’t stop breathing, don’t stop breathing. Never did I think at 28, I would have to mentally convince myself to keep breathing. Finally, after hours of telling the nurses that I couldn’t breathe, I went into acute respiratory failure
I woke up in the OR with my mom next to me, getting one quart of fluid drained out of my lungs. After that, I went in for a bone marrow biopsy and lymph node biopsy to determine whether or not I had cancer. It’s all a blur. I eventually had a port placed in me, so it was pretty clear what the verdict was. “Treatment” at the hospital consisted of me being blacked out on anxiety/pain medications. Eventually one week of living in the ICU later, that’s when the news broke. Lymphoma. 28 years old and I had cancer. I was so numb that I couldn’t even cry.
This wasn’t just affecting me, it was affecting everyone around me, which scared the crap out of me. But I still didn’t cry, because sometimes you don’t have to be strong just for yourself, you have to be strong for the people that you love. More people kept visiting, and it was all becoming very real. I was finally diagnosed and staged. I had Stage 4B Hodgkin’s Lymphoma. The oncologists at the hospital weren’t prepared to treat me, since it was so aggressive and had spread all over my body. They wanted to throw the towel in on me, which they did. After waiting a few days too long for a bed, I was transferred to the ICU at Sylvester Comprehensive Cancer Center. Dr. Lossos, who deals with high risk Lymphoma cases, was going to handle my case. I started chemo that night, which is extremely hard to do, and a lot of strings had to be pulled for that to happen. The regimen that was chosen for me was BEACOPP. It’s not the standard Lymphoma regimen, this was my only hope. I underwent 7 months of salvage chemotherapy, radiation, and more chemo. To make a long story short, I survived. I was one of the lucky ones, and this is why cancer research is so important
Although I’m not directly affected by breast cancer, October is Breast Cancer Awareness Month. 5% of the proceeds (up to $25,000) from each purchase of @CapeCodChips Pink Himalayan Salt & Red Wine Vinegar Chips is being donated to the Susan F. Smith’s Center for Women’s Cancer at Dana Farber Cancer Institute to aid in cancer research! Without research, we will never find a cure.