Living with brain cancer
Vulnerability is scary. To share my story, and the complex emotions intertwined with my journey, is daunting. When I started this blog during my recurrence in 2014, it served as a platform to update my community spread across the globe. It was also a form of therapeutic reflection. Over time, I didn't expect the impact …
In my last post, Sailing New Seas: My Biopsy Results and The Need For a Cure, I recounted my experience receiving news that my tumor has evolved to a grade III anaplastic oligodendroglioma. Given this news, the path of treatment is uncertain. UCSF's tumor board had one recommendation while my doctors in Boston had an alternative view. Each opinion is equally reasonable. The difference lies in the fact that I am now in uncharted waters. There's no map navigating me to my destination. In fact, no one truly knows where we're heading. All I know after receiving my results was I needed to find a captain for my ship, so I headed back to Boston to see Yoda.
On Monday, June 4th I had my neurooncology appointment at UCSF. Since being discharged from the hospital, my days have been pretty smooth: waking up, exercising a little, hitting an energy-wall, and relaxing. I mean how often do you get an excuse to binge-watch Netflix guilt free? As Monday approached though, I could feel the anxiety creeping throughout my body. It was the day I'd receive my biopsy results from the surgery.
On Tuesday, May 22nd I walked into UCSF at 6:00am for an awake brain surgery unsure how the operation would go and in what condition I would wake up. A week later I walked without a cane to Zachary's Pizza in Oakland to eat out at dinner with my family. Grappling with this concept, finding …
72 hours after an awake brain surgery, somehow we're out the door, with a cane, and on our way to outpatient recovery! Lot's of rehab (and sleep) ahead, but tremendously thankful to my family and the UCSF medical team (especially my surgeon Dr. Hervey-Jumper and the amazing nurses)! I'll write later about this surreal experience …
Jeremy officially moved to the Neuro inpatient floor into his own private suite. He is all settled in with family/friend pictures and photos of orcas. He has been visited by occupational therapy and physical therapy to assess his function and we will find out soon what their recommendations are post inpatient. Jeremy was able to …
Continue reading "Making progress: update 5/24 from Jenn (Jeremy’s Sister)"
Post surgery: Surgery went great yesterday, the doctors reported that jeremy was a rockstar, obviously! They were able to resect enough of the tumor for therapeutic benefit and for the biopsy/genetic testing. Today he has been up and talking and making friends with all the nurses. Jeremy currently is still in the ICU but will …
Continue reading "Surgery Update from Jenn (Jeremy’s Sister)"
I am writing this the night before going into surgery, so before you read below on ways to help, please know that if we have crossed paths in life, you have already provided me more than I could ever ask for. I believe our lives are a tapestry of the people we meet and the …
Warning: This post is long! This is not the usual post where I dive into the emotional aspects of my experience. Rather, this is a pretty cut and dry description of my three weeks of meetings and calls to develop a treatment plan. During my 2014 recurrence, I wrote a similar (...yet less detailed) post about treatment decisions. I received a lot of messages from patients and family members of patients who found that post helpful. This is for that audience. My hope is that this very detailed explanation of my treatment meetings may shed some light on how much information is involved in informing a treatment plan. While I share a lot of detail, I want to note that this is my experience. Every individual's situation and decisions will be unique to them.
Introduction: Living with brain cancer I always told people it was a matter of "When" not "If" my tumor would start growing again. It was one of the few certainties in a journey of uncertainty. During my recurrence in 2014, my tumor extended into the motor strip making a complete resection impossible. I had to …
Continue reading "When the can doesn’t land as far as you hoped – another recurrence"
