Grateful to Have Two Birthdays
Keith
State: Florida
Congressional District:
Diseases
Cancer
My Story
“I think you have cancer.” These dreaded words no one wants to hear came after I went to the doctor for a sore throat. It actually felt like I had something “stuck” on one side of my throat and my ENT, after a referral from my GP, confirmed it with a scope up my nose. An oral surgeon confirmed that I had tongue and throat cancer. On December 14, 2020 I lost half my tongue, 8 teeth and 18 lymph nodes from the right side of my face. My missing tongue was rebuilt using a ‘flap’ from my right forearm. I woke up with a feeding tube and a trach. This was the worst experience of my life—I woke up not being able to speak. COVID meant that my wife could stay overnight, but she visited daily. After six weeks I was able to return to work.
I was in the hospital for a week in which my wife visited me daily but COVID prevented her from spending the night. With therapy I was able to start eating solid food again and was able to return to work after 6 weeks. I did not need chemo or radiation since the surgeon was able to get all cancer out. It took about a year before I started feeling ‘normal’.
Fast forward two years in January 2023 and I started feeling very fatigued. Luckily, my wife is a medical professional and ordered blood work which came back with low white and red blood cells and low platelets. After months of monitoring, in June my blood work was bad enough my GP sent me to a hematologist who scheduled me for a PET scan. I was out of town with my wife and in intense pain in my lower right side, when my doctor called me and said “I have no idea how you are able to walk, you have a tumor pressing against your sciatic nerve”. A month later, I seized up, couldn’t stand and felt like I could not breathe. I showed up for my doctor’s appointment in a wheelchair. My oncological radiologist immediately scheduled my first radiation treatment.
After about 6 treatments I was able to start walking again. I once again received chemo and was on Revlimid which put me in the hospital with a 102 fever. My doctor told me I should consider getting a Stem Cell Transplant—as we started the process of getting this approved by my insurance company they informed me they would not cover the SCT where I lived in Orlando but would an hour and a half away in Tampa. So off to Tampa we went. A multiple myeloma specialist performed another bone marrow biopsy and indicated that a change in my regimen to Kyprolis and Venclexta was necessary. In January 2024, another biopsy came back good, so we started the SCT testing process which was finally approved locally by my insurance. February 26, 2024 I was admitted to the hospital and was given a high dose of chemo to kill my immune system. I look at this date as my re-birth day. After three weeks in the hospital I began the 100 day wait in isolation at home, which meant I could not work. Due to my insurance, I was not able to get paid those 100 days.
Despite also having one of my kidneys removed following tests which showed a mass, my multiple myeloma was undetectable in my last BMB— so I’m in remission! Today, I am able to work full time.
My Motivation and Inspiration
I want to ensure everyone has access to the proper healthcare that they need.
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