Rough Seas: Confronting the “experimental” aspects of experimental treatment

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 …

Plan A (IDH2 Inhibitor) is a go: Precision Medicine and Privilege

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 …

Uncharted Waters: waiting for a treatment plan

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.

Sailing New Seas: My Biopsy Results and The Need For a Cure

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.

Discharged!

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 …

How to Help

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 …

Treatment Meetings and Plan

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.

When the can doesn’t land as far as you hoped – another recurrence

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 …