Charlie, United States
March 2023.
The month that changed my life forever. Having recently suffered a second, minor stroke, I went to see a neurologist. She ordered five MRI scans. She was able to identify the strokes but questioned what she thought might be fatty tissue on my back rib and suggested I go see an oncologist to look at it. My oncologist thought the same thing but said we should biopsy it and see how it came back but it probably wasn't anything to be concerned about.
A few days later, she walks into my waiting room and apologizes. I knew it going to be bad. You have Leiomyosarcoma, Charlie. IT typically affects women but has been seen in men. A rare, deadly form of cancer. My world fell before me.
At the same time, I was referred to a cardiologist to deal with my extremely high blood pressure. I went into the hospital to possibly have a stent put it and luckily was able to get out of that surgery without the stents. Medications changed quickly and she is stiil my cardiologist today even at an hours drive away.
So Dr. Nair (my oncologist) referred me to an oncology surgeon with Baylor Medical. He wanted to see a schedule of radiation scans on my chest before determining next steps. Three months of radiation treatment took me to early September of that same year. After completing the radiation, the doctors wanted to give me time to recover. A few meetings later, he wanted to bring in another doctor to assist him since the cancer was possibly attached to my rib.
The two of them conferred and decided my best treatment option was for the new surgeon to take over and perform the operation. The plan was to schedule a rib resection on December 8, 2024. I crazily thought I would miss a week of work and then slowly wok my way back into the office. I have never felt so much pain and still as of this day, February 8, 2025, it still hurts. But, the good news was that I was NED in January.
A few months later, my doctor order a PET scan to see how I am doing. The results went back to Dr. Nair. She informed me that I had Stage IV cancer of the pancreas, liver, ribs, and lungs!
I thought what the hell did she just tell me??? Stage IV??? I told her that it was time to call MD Anderson. I called the next day and got an appointment with the Sarcoma department the day after that I had an appointment scheduled with Dr. Haddad. She was wonderful but not able to tell me how much time I had left. All she could say was this cancer would kill me.
Me and my girlfriend were devastated. That was late March 2025 and my first Chemotherapy was scheduled for the following week in April. I have had my PICC line in my arm since April 2024. Follow through with me to October 22 where I had my final Chemotherapy treatment before getting assigned to Dr. Yap on a Clinical Trial opportunity.
More next time about what happened during chemotherapy and my decision to accept the clinical trail.