My story starts just a little bit differently because it starts after my sisters’ stories. So, make sure you go read Jenn and April’s story first to get more details. Then bear with me as I take you through my history, which at first I thought was no big deal. Plus, until I started writing this hadn’t really thought too much about it and even had to research to remember some of the details.
Primary Care Doctor – 2015
I went to my primary care doctor and discussed what 2 of my sisters and my dad had gone through so far. Remembering back my doctor probably had no clue what I was talking about, and I am sure didn’t explain it properly. I asked for a head and neck MRI telling her I need to check for changes from a previous MRI when I had Bells Palsy in 2012, where they found a cyst near my brainstem. It made sense to add contrast to check for these tumors. At this point, it didn’t feel like a serious matter. It was something I was looking for to prevent something bigger. The results of that MRI showed the cyst hadn’t changed but I had about a 3cm tumor on my left carotid artery. My primary care doctor suggested I talk to one of the doctors taking care of my sisters.
My First Specialist – 2016
I made an appointment to chat with Jenn’s doctor, and both Jenn, April, and maybe even my dad went with me. The doctor discussed our family case, the treatments both my sisters had gone through; he talked about my “benign” tumor that, through his research, showed they only grew above the neck. He suggested I visit April’s surgeon or his colleague and Jenn’s radiologist. After some family discussion, I chose radiation.
The Choice of Radiation
I had seen both sides of treatment within my family. All successful treatments, but my dad’s surgery in 2005 haunted me. I was 21, newly married, standing next to my mom and April, and it was the first time being at the bedside of someone heading into surgery. It was to remove a benign tumor that was causing my dad’s shoulder pain, I don’t remember the word paraganglioma being said. Just before taking my dad back, a doctor went through all the terrible possible outcomes. I sat in the waiting area and thought, what the heck? My dad was just telling jokes why did I not know what a big deal this was. Later I understood why the doctor had to go through all that but he could have presented it in a better way. My dad came out of that surgery just fine and a few days later went home, no big deal. Radiation seemed like the quickest result with no recovery and the best possible outcome.
I sat in the waiting area and thought, what the heck? My dad was just telling jokes why did I not know what a big deal this was.
Radiation
That March I met with the radiologist and we decided that a cyberknife treatment was our best route. That same day I went in to see a technician or nurse and had my mask made. Have you ever done paper mache? Think this process but over your face. It didn’t smell good, very sticky, and easily could turn someone claustrophobic. This mask, modeled by my 3-year-old at the time, was used for the 3 treatments of cyberknife radiation.
Preparing for these treatments felt stressful and I remember asking my Bible study group to pray for me but I think it just was inconvenient and radiation felt like something you should pray about. They were quick treatments, maybe 30 minutes. The tech played music in an open room while I laid with my mask on, eyes closed, screwed into a table to prevent me from moving. The equipment moved around me and the only side effect I had was exhaustion, which probably had more to do with driving an hour each way for 3 days while still caring for my young girls. Weeks later the doctor ordered a follow-up MRI to check progress. Unfortunately, my insurance deemed it unnecessary. Multiple attempts of trying to get it covered and I still was not approved by October 2016. So, we assumed the treatment worked and life moved on, no big deal.
Cancer – 2018 to 2020
Jump forward to 2018 through 2020 my family went through a roller coaster when my dad got esophageal cancer. I focused on being with my family and helping to care for my dad.
Pandemic 2020
Arizona shut down in March and that changed everything. From March to June, my dad suffered from the complications of chemo, esophageal surgery, and being isolated from his family at 3 different hospitals and 2 nursing rehab facilities. At the end of June 2020, he passed and it made me think about my health, my future, my kids, and what I wanted for our lives.
A Big Deal
Jenn and I, the researchers of the family, had conversations off and on about the possibility that Dad’s cancer could be connected to the paraganglioma. These paragangliomas suddenly didn’t feel like “no big deal”. They suddenly felt way more serious. In one of our conversations, Jenn shared with me that a good friend of hers had said your family has always seemed to talk about these tumors like they were just a normal thing. In her mind, it was always so much bigger. Jenn was already digging deeper into her own health and then in early 2021 received her diagnosis of neuroendocrine cancer. One of her tests was a genetic study showing the SDHD mutation and I decided to have the same test.
Your family has always seemed to talk about these tumors like they were just a normal thing. In her mind, it was always so much bigger.
I contacted the company where Jenn’s test had been completed. The genetic counselor went into depth about her knowledge of paragangliomas and the SDHD gene and how she would be surprised, based on my family history and my own medical history, if we got a negative result. Shocker, the test results showed the same mutation. We discussed my next steps, my daughters’ possibility of having the gene, and where I should go next. I was referred to an endocrine doctor at MD Anderson in Gilbert and that is where we are now.
I have an appointment on April 12th, 2021. To take something that my family thought was no big deal and confusing to something very serious and worth sharing.