Living with brain cancer
Little White Dot (3/3/23) On January 31st, I had an MRI that revealed what looked like a little white dot. This spot was seen on scans used with contrast, meaning something was going on there that involved blood. The worst-case scenario was that this spot was an area of “enhancing tumor,” or tumor recruiting my …
Transitions I just took my first sip of a latte at one of my favorite cafes in Brookline. My first coffee shop trip since surgery! Coffee shops, with their ambient noise (and of course endless array of pastries and coffee), are my favorite places to write. And if you have put one and two together, …
I’m sick of being sick. I’m sick of laying on the couch. I’m sick of having to cancel plans I made months, weeks, or days in advance from grabbing a cup of coffee to going on spring break vacation. I’m sick of feeling good for a day or two, thinking I’m on the mend, only to realize I was being tricked. I’m sick of my doctors and I knowing what my symptoms are, but not knowing why. I’m sick of not knowing when I’ll feel better for a sustained amount of time.
September 25th, 11am: I sat in my doctor's office at UCSF waiting for the results of my MRI. I've been in this same office numerous times with a picture of mountains hanging on its sterile white walls. Even as a medical student, I wonder why we design doctors' offices this way. If you're going to make it all white, keep it all white without putting up a picture of a place patients would rather be. Otherwise, and preferably, make the room more warm, welcoming...human.
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"
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.
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's Journey 