mantle cell lymphoma (MCL)
This may be the most vulnerable thing I’ve ever shared. I tend to not like to share too much of my personal life on social media. I am a businesswoman, so a few pictures of my kids, family, or vacations are usually the extent of what I put out there. But if what I’m about to say here about my story helps even one person listen to their gut or body, then I am proud to have helped. Please take a few minutes to read this.
About two years ago, I started developing problems with my tonsils. Lots of sore throats, recurring tonsillitis, and strep throat. I visited an ENT who told me I had allergies. He gave me some medications and nasal sprays and sent me on my way. As time went on, my condition started worsening. My tonsils started getting larger, I was snoring heavily, and even developed obstructive sleep apnea (OSA). I saw a pulmonologist for the OSA and another ENT who sent me for allergy testing, gave me an endoscopy scope of my throat, and diagnosed me with gastroesophageal reflux disease (GERD). More meds, steroids, and nasal sprays. Now it’s been about a year, and my symptoms are not subsiding. They are actually getting worse. Now, I have all the previous symptoms but am starting to choke on food, cough all the time, and get a rasp in my voice by the end of the day. I was frustrated to no end because we were at the tail end of the COVID pandemic, and I felt in my gut like I wasn’t being treated for my problem.
I wanted my tonsils removed, and every doctor I went to told me that adult tonsillectomies are rare and risky because as you age your tonsils become vascular, and there is a high risk for infection and hemorrhage. I felt at a loss. My close friends, clients, and family knew of my struggle. One of my friends suggested I see a third ENT. She said, “I know this doctor will take out your tonsils. I know her, and once she sees what you’ve been through, she will help.” I was skeptical but hopeful. I went in for my appointment ready with an arsenal of medical records so she could see I had already tried everything. She agreed to take out my tonsils but warned me of the severe post-operative pain and possible bleeding that could be extremely dangerous. I told her I’d take my chances. My mother begged me not to do it out of fear, and I told her I wanted my quality of life back.
I was sent to my primary care physician (PCP) to get my preoperative clearance. It was then, after the results came back, that I got a call from my doctor who told me that he wouldn’t clear me for surgery because my platelets were below normal. (Platelets clot your blood, so I knew that wouldn’t have been safe.) He sent me to a hematologist who ran a lot of blood tests. Everything came back normal aside from my platelets, so he agreed to give me two platelet infusions to get my levels to a safe place to have surgery. I was so happy!! Knowing all of the hoops I had to go through plus the pain and possibilities of danger of getting my tonsils out, I was ready for surgery!! I had surgery to remove my tonsils on July 26, 2023. Everything went according to plan, and I made it through with flying colors. Although the pain of recovery was excruciating, within two days I was already breathing better and not snoring. I knew this was going to be life-changing. I took two weeks off from work as the doctor ordered and was a model patient. I was starting to feel great and looking forward to going back to work.
Nine days into recovery, my ENT doctor called me to see how I was feeling. I told her I was feeling great and that I was ready to go back to work soon. This is when I got the news that will forever change my life. She said, “Kori, your surgery was one of the hardest tonsillectomies I have ever performed. Your left tonsil was so large I had to cut into the back of your throat muscles to completely remove it. It was large and irregular and you bled ALOT. Something in my gut told me it wasn’t normal and to send it out for pathology to get it dissected. I’m sorry to tell you, but it came back positive for a type of B-cell lymphoma. I would suggest you make another appointment to see the hematologist/oncologist ASAP.”
Everything in my body went numb. I couldn’t call and tell my mom this news over the phone. I wasn’t even sure what it all meant at that point. I knew I needed someone to go with me who could be my ears and take notes in case I got the worst-case scenario. My appointment was made for the following Monday. I asked my best friend who works in the medical field to come with me because I knew she would be the moral support I needed, and she would be versed in whatever medical terminology I didn’t know. I got the news. I was diagnosed with mantle cell lymphoma (MCL) which is a rare form of this devastating lymphatic cancer/disease. I was told it is incurable but definitely treatable, and that once treated with aggressive chemotherapy and a stem cell transplant to follow, I could be in remission for years to come.
The doctor gave me a handful of orders to have PET scans, CT scans, blood biopsies, and a heart echocardiogram. I left the office with my best friend and fell apart. My initial thought was how am I supposed to tell my children that their mother has incurable cancer? How am I supposed to tell my parents that their daughter is sick and will need six to eight months of chemotherapy treatments and may not even be able to work? What is going to happen to the business I’ve worked for so many years to build into a success story for myself? Nothing can prepare you for the level of disparity you feel when you get this news about yourself.
I called my parents and asked them to come over, that I wanted to speak to them about my appointment. My kids were already home, so I figured I would drop the bomb at once. My parents were at my house even before I got there. I walked in, and they were all sitting on the couch in my living room waiting for me. I said, “I’m not going to drag this out or sugarcoat anything. The doctor found cancer when my tonsils were removed, and today I was officially diagnosed with lymphoma.” My children, my parents, and I all fell apart together. We cried and hugged and talked about my immediate future and what I had to prepare for. In the strangest way, it was the most loved I have ever felt in my whole life. It was August 8, 2023, the worst day of my life.
Today is August 20, a mere 12 days later, and I have had all of my tests done that the doctor requested and have even had a port placed in my chest to prepare for chemotherapy. As I sit in my room now writing this blog waiting to hear from my oncologist on Monday as to when I will start my chemo journey next week, I feel full of hope, strength, positivity, clarity, and love. When I have waves of uncertainty, I tell myself to fight for the future of my children. THEY ARE MY WHY!! I have decided to allow my faith to be stronger than my fear. I am getting ready to jump into the ring and fight in the heavyweight division with an opponent called lymphoma, AND I AM GONNA BEAT THE HECK OUT OF HER!! THIS CANCER HAS MESSED WITH THE WRONG GIRL. I have always been an independent strong female, but in the past 11 days, I have found out that I am a WARRIOR. I’m not sure what this next year holds for me, but I can assure everyone who cares about me that I will NEVER give up. I have had so many people asking what they can do for me. My support squad is BIG, so my response for now is just to pray. Whatever God you pray to, please send in a good word for me!