Sep 15, 2020 Latest post:
Dec 20, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. It was late in the afternoon September 10th, when I finally learned the name of the demon that had been growing inside me and causing me such pain – Paraganglioma / Pheochromocytoma. I have a racquetball size tumor sitting by my adrenal gland. I also have a tumor on my T3 vertebrae on my spine that has eaten away more than 50% of the bone weakening it to the point that it had collapsed and was pressing on my spinal cord causing the pain and numbness. Over the course of the next hour, I listened as my wife and doctor work the phones tirelessly to get my medical records transferred and an appointment set up at one of the best hospitals in the world for treating such rare tumors – The Mayo Clinic. It is not easy to get an appointment quickly at the Mayo Clinic but before Jill and my doctor were done, I was set up for 11:00 am appointment the very next day.
I am absolutely amazed by my care team. These are the absolute best of the best doctors with mind blowing resumes. It is not lost on me that my team is almost all women knowing that growing up it was largely just the best “man” vs best “person” serving as doctors. I am thankful for their sacrifices and dedication to saving lives.
The organization at Mayo Clinic is something all hospitals and clinics should strive. Prior to your appointment, you receive an agenda with all sorts of details about your visit. You can tell any employee your name and birthdate and they will pull up your agenda and take you to your next stop. After all your consultations are done, detailed notes are provided on what was covered at your visit along with the plan going forward.
My plan is to spend the next week and half getting my blood chemistry in order. One unique feature about Paragangliomas is they releases a lot of hormones into the body. Adrenaline and Noradrenaline trigger your body’s fight-or flight response to a perceived threat. This causes your blood pressure to increase and your heart to beat faster. It also explains the crazy night sweats I have been having.
I have a first surgery scheduled for after my blood work is in order. The priority will be to remove as much of the spine tumor as possible, relieve the pressure on the spine, and stabilize the spine. I will then need radiation to finish off any bits of tumor that cannot be removed surgically.
A second surgery will be conducted sometime later to remove the primary tumor sitting by my adrenal gland. All my current MRI, CT, and PET scans only show these two tumors. With recovery and rehab, I am hoping to be back on my feet in 2-3 months without the need for additional therapies.