I found out in June of 2021 that I had a very rare tumor, the doctor called me a Zebra. I asked if that was like a Unicorn and she said yes it is.
It started out as a normal day, but as I was getting ready for work, I felt a tremendous pressure on my chest. I thought I was having a heart attack so I headed to the hospital. After an EKG and a chest X-ray, I was told they found about a 4cm mass around my left kidney. Fast forward though lots of blood work, a CT with and without contrast, a MRI with and without contrast, a stress test, and many other test, it was determined the mass was 5cm and entangled in the main artery to my left adrenal gland and kidney. We knew nothing other than I had a tumor. The doctors, nurses and those reading the scans had never seen anything like it. During the past few days of testing, a cardiologist, an internal medicine doctor and a surgeon had all been called in. The surgeon was very forth coming in that they didn’t know what they were looking at but it needed to be removed. He suggested a biopsy, which I refused. I wanted it removed, there is no need for a biopsy in my eyes, you can test it once it’s out. I had made my decision, that no matter what it was, I didn’t want to receive chemo.
They wanted to do the surgery as soon as possible but the PA working with the surgeon wanted to do a few more test. She scheduled another MRI with and without contrast and a 24-hour urinalysis that she would send to the Mayo Clinic. That is when the massiveness of my situation really hit me. I knew this was big. They still couldn’t give me any answers except, I had a very large tumor. I was sent home to wait on the results from the Mayo Clinic. It seemed like forever but it was only a few days before we were called in. The PA walked in the room and told me the story of hearing a horse’s hoofs but only to turn around and see a Zebra. I asked was that like a unicorn. She replied, that is exactly like a unicorn, you are a unicorn. Little did I know, she had done a lot of research since she met me in the ER. She began to share the results of my test. My Norepinephrine which should be in the range of 15-80 mcg/24h was 591. My Normetanephrine which should be below 900 mcg/24h was 2,769. She went on to explain that the tumor is called a Sympathetic Paraganlioma. I was then told they could not do the surgery, they had never seen anything like it. It was so rare he wouldn’t even try to remove it. I would have to go hundreds of thousands of miles away from home to find anyone with experience. I was referred to a Robotic Surgeon in the area, who we would meet the same week.
After the diagnosis, I began to dig and see what I could find out about this tumor. I found very little. What is worse than finding out you have a tumor? Finding out how extremely rare it is, how little is known about this mass that is inside of you. I found the Pheo Para Alliance which explained the symptoms and I began to feel a sense of relief. You see for years I’ve lived with almost every symptom listed. I had been dismissed time and time again, year after year of begging doctors to help me. We still aren’t sure if this began with hypertension during pregnancy over 30 years ago or if it has been within the past 15 years. I know over the past 10 to 15 years, I’ve suffered with extreme highs and lows, feeling like I lost my purpose. Hot flashes that words can’t explain. Uncontrollable extremely high blood pressure, tremors, and a heart rate that would speed along no matter how hard I tried to relax. The list goes on and on but after 10 years of being dismissed by my doctors, I accepted all these issues as my normal. I was slightly relieved in that moment, when I heard I had a tumor. It wasn’t all in my head, I wasn’t crazy.
On August 3, 2021 my Robotic Surgeon removed my paraganglioma. He was more than prepared even though he had never experienced this type of tumor. I had three anesthesiologist, with extra staff in the OR. My para was very angry. It would dump mass doses of hormones every time it was touched, but my surgeon and his team were prepared. Going into surgery, I knew the odds were not in my favor or my adrenal gland and kidney. I was fully prepared to die. I had list made for my husband in the event I didn’t make it. If I did, I was prepared to wake up without my left adrenal gland and kidney. HOWEVER, my team and by the Grace of God, I survived and so did my adrenal gland and kidney.
My journey wasn’t over after surgery. The detox from my own mass doses of hormones, was horrible. The not knowing, if what I was experiencing on a daily basis was normal, was horrible. Still to this day, the not knowing, can be terrifying. When you call your healthcare provider and you hear the words, “I don’t know”, I can’t express how that feels. I’m still having symptoms, my blood pressure is still elevated. My heart rate is still fast. I still feel the episodes of adrenaline and the flushing that follows. I don’t know if this normal. I don’t know if it will go away in time. My doctor’s can’t give me those answers because so little is known about Neuroendocrine tumors. I have to live the rest of my life being tested on a regular basis for tumors that very little is known about. That is scary! I will continue to share my experience to help others and fight for research to find out more about these tumors so others don’t have to hear the words “I don’t know” from their doctor.
This journey has given me a new lease on life. Life is Precious!! It’s to be enjoyed and lived. So to all my Zebra brothers and sisters, I encourage you to LIVE! Make memories . . . it’s the only thing we truly leave behind.
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