I’m a 43-year-old single mom to two boys, ages 12 and 6. I’m a daughter, sister, aunt, and friend. I have been a teacher for 18 years. I’m neither a victim nor a survivor of cancer; I’m a fighter battling neuroendocrine tumor cancer, synonymous with carcinoid cancer, and incurable.
After nearly three years of hot flashes, abdominal distress, and pain, an ultrasound and MRI conducted in November 2021 revealed “enumerable solid masses, likely malignant.” A game changer.
In December of that year, a hepatologist in a nearby facility ordered further testing. I can still hear the resounding “pop” during the biopsy, the smell of the room, and how cold it was. If morbidity had a feel, I felt it. Results indicated a neuroendocrine tumor.
I don’t remember Christmas 2021. My boys were happy—that was all that mattered. In January 2022, a DOTATATE PET scan indicated the primary tumor was in my ileum with metastasis to the liver, mesentery, lymph nodes, and spine. Surgery was not an option since my liver was encapsulated with tumors. I’d likely need a transplant.
An interventional radiologist recommended a specific liver therapy but wanted to consult with a colleague first. I’m so thankful for this. In mid-January, I had an appointment at The Recanati/Miller Transplantation Institute at Mount Sinai in Manhattan. After a battery of tests, Dr. Edward Wolin, director of The Mount Sinai Center for Carcinoid and Neuroendocrine Tumors, said a liver transplant was not advised.
Instead, I began a course of injections, oral medications, and hepatic embolizations to get my liver tumors under control. After a total of four liver embolizations, ending in August 2022, I regained my strength and some weight, and I’d never felt better. I returned to work full-time in September 2022.
Early on, Dr. Wolin said he couldn’t promise quantity of life, but he could give me quality of life, and that he did. For that, I am forever grateful. He gave my boys their mom back. He brought life back to me. I fought for it every step of the way.
Next, we needed to work on my failing heart. On April 24, 2023, I had surgery at Mount Sinai to replace my tricuspid and pulmonic valves. Several days later, I had a leadless pacemaker “installed” in an emergency procedure and on May 3, I returned home. I graduated from cardiac rehab in that August.
But that fall, my yearly PET scan and bloodwork revealed my tumors had started to grow and my levels were again elevated. In November, I began four sessions of PRRT (peptide receptor radionuclide therapy), a targeted, systemic radiation which was completed in April 2024.
Summer brought with it another round of repeat scans in early July 2024. Reports indicated stable tumors but my heart valves were once again attacked. Carcinoid is very sneaky. On July 30, 2024, I had a double valve in valve transcatheter procedure for my tricuspid and pulmonic valves. I recovered well, enjoyed the rest of my summer with my family and went back to work in September.
On October 14, 2024, I had scans done again and reports indicated a 66 percent decrease in the tumor burden in my liver!!! Exciting news but I knew what that meant. Another surgery. My multidisciplinary medical team decided it is the perfect time to further reduce my tumor burden in hopes of saving my heart from being attacked again. This was always in Dr. Wolin’s plan.
I am scheduled for an invasive cytoreductive surgery on January 14, 2025 at Mount Sinai. I will be in the hospital for up to 7 days and out of work for another 6-8 weeks.
My goal is to fight long and hard to watch both of my boys graduate high school and make sure they are respectful, educated, hardworking, and well rounded human beings that contribute positively to our society. They propel me to do better every day.
I’m here today because I didn’t stop advocating for myself. I have a tremendous team of doctors, an outstanding support group, and a positive mindset. While falling increasingly ill, I questioned my faith in God. After a candid conversation with my priest, I now believe I was chosen for this fight because I’m one of God’s warriors.
I still work full-time. Having health insurance, receiving a paycheck, and continuing to feel like I’m living a normal life is necessary. Some of us are dealt a more challenging hand than others, but I firmly believe we are given only what we can handle. I still have a good quality of life, and I plan to continue living the best life I can for myself and my kids.
On December 17, 2021, my life became a game of chess. I’m not a pawn, bishop, knight, rook, or king. I’m the Queen, the most powerful piece and the most powerful defender in the game. I’ll fight to remain standing, attacking from any direction necessary and maneuvering through any challenge with grace and intelligence. I am a fighter.