Jan 21, 2018 Latest post:
Mar 29, 2023
I'm a Wisconsin girl at heart that fell in love with my husband, Greg, and the diverse landscapes of Utah. So, here we are. After separating from the Air Force in 2009, we moved to Salt Lake City for schooling in our respective professions. I was fortunate to get my first job as an occupational therapist in acute care at the University of Utah Hospital. My support system grew FROM my immediate and extended family, friends in Wisconsin, and Air Force family (to include non-Air Force folks I met during my time in service) TO include 2 German Shepherds (Addie and Ulli), a group of close OT and PT friends, my church community at St. Ambrose, my University of Utah work family, Yoga Assets and Greg's helicopter pilot friends. That still doesn't include everyone... I am truly BLESSED! If you are visiting this page you likely belong to one of these groups, and I want you to know that regardless of how long it has been since we have talked, I truly value your relationship and role in my life.
So, why do I have a Caring Bridge profile? I got diagnosed with a mass in the pineal region of my brain on December 1, 2017. I was having some intermittent visual issues, headaches, nausea, difficulty with concentration and memory a few weeks prior. I got admitted to manage the resulting hydrocephalus and to perform a biopsy. On December 4th I had a third ventriculostomy, which means the neurosurgeon poked a hole in my 3rd ventricle to allow the cerebrospinal fluid to bathe my brain and spinal cord. A biopsy of the mass was also performed during this stereotactic brain surgery. I patiently waited for about a week, then learned that the initial biopsy results indicated a pineal pineocytoma. This is a type of benign tumor that grows from overactive cells of the pineal gland. I was so relieved. My mantra was "no blastoma" since the biopsy procedure, and I asked people to specifically pray this. My neurosurgeon, Dr. Schmidt, scheduled me for a surgical removal of the tumor 4 days later. I figured this would just be a small blip in my life's timeline.
On December 15, 2017, a total gross tumor resection was completed. I didn't need an extra-ventricular drain or shunt post-op, and was on my way to recovery. I felt tired, had difficulty with upward gaze and double vision, but all of that was to be expected. The surprise came with the histology results from a a closer look at the whole tumor. It was upgraded to a pineoblastoma. This is the malignant form of overactive pineal gland cells. The neurosurgeon ordered a very long MRI of my brain and spine that indicated "no evidence of tumor". That means the mass was likely a primary brain tumor (originated in the brain). Also, there is a possibility that cancer cells are floating around my brain and/or spinal cord that could develop into a tumor. I met with a neuro-oncologist at the Huntsman Cancer Institute (luckily it is located just behind the University of Utah Hospital), and he recommended 6 weeks of craniospinal irradiation followed with a short course of chemotherapy. When I met with the radiation oncologist and his resident, they spoke in more detail about proton beam therapy as an alternative to traditional photon radiation. Unfortunately, it is not offered in Salt Lake City, or Utah, for that matter. In fact, out of the 6 states that border Utah only AZ has a proton beam center in Phoenix that my radiation oncologist knew little about.
Based on the radiation oncologist's recommendation of the "people rather than the center" that he trusts, he referred me to a colleague at MD Anderson in Houston, TX. I think you get both the trusted doctor and the center's reputation at MD Anderson. The team at the MD Anderson Proton Center were able to setup a consult with the specific doctor my radiation oncologist recommended and their setup/simulation for proton beam therapy the following week. Greg and I are going to Houston January 24-27th. We plan to look at housing options for our 6-8 week relocation during treatment.
This story is superficial and doesn't elude to my person experience with this disease. I don't want to waste time or emotional energy recounting the past, so I'll use journal entries to explore this further. Maybe. It snowed a bunch last night and is still snowing today, so I'm going to get bundled up and play outside for now.