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 …
Thank you all for the support after my last post about the rough start to treatment. I appreciate all the messages as well as food that has now filled my fridge! I've realized this has become the primary means most people receive updates regarding how I am feeling. After seeing a lot of people this …
Note: Anything I share in posts related to my treatment are my own personal experience. It does not reflect what may happen to someone else, or what others should do. More so, I share these posts as a glimpse into my experience living with brain cancer. Hopefully there are parts of my story that resonate, areas …
Continue reading "Rough Seas: Confronting the “experimental” aspects of experimental treatment"
In my last treatment post, Uncharted Waters: waiting for a treatment plan, I outlined three treatment options: Plan A: IDH2 Inhibitor Plan A-: Immunotherapy Plan B: Reirradiation and CCNU chemotherapy Over the past few weeks we have been waiting for two factors to determine which treatment plan I could do: insurance coverage and my genetic test …
Continue reading "Plan A (IDH2 Inhibitor) is a go: Precision Medicine and Privilege"
The National Brain Tumor Society's 2018 Bay Area Brain Tumor Walk was amazing! Thank you to everyone who walked, donated, and supported Team Jeremy at this year's event. Together, we raised over $13,500 (UPDATE: $15,000)! It was truly special having my family as well as friends from all stages of my life (high school, college, …
Continue reading "Team Jeremy @ The Bay Area Brain Tumor Walk!"
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)"
