Living with brain cancer
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"
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 …
I know it has been a while since my last post, but I wanted to take a moment to honor and remember my friend Carolyn. Carolyn and I met when I first started my treatment at Dana Farber. I remember being incredibly nervous going into my first young adult support group session. I was still …
Two years ago today, I started my first day of chemotherapy. This morning at Dana Farber, I received news that my most recent MRI is stable, and I can now extend my scans to every 4-6 months! While the exam room for my visit was the same, it was surreal to think how much has …
Whenever I have trouble falling asleep, I focus in to that day on the river. Sitting in my kayak, I paddled as slow as possible, hoping that this moment would never end. I took every second I could to soak in the beauty around me: The tranquil flow of the Snake River, the ascending dry …
On November 5th, 2014, I left Indonesia for what was supposed to be a 3-week Thanksgiving vacation. As most of you know, this vacation turned into a rollercoaster of treatments and recovery for my recurrent brain tumor. Now, two years later, I write this on November 5th, 2016 during my first night in Sukadana, Kalimantan …
It is no understatement to say that the Affordable Care Act (ACA) helped save my life. Since I was diagnosed with brain cancer at the age of 12, I have been an insurance liability. Living with cancer for more than half my life, I clearly fall into the category of someone with a “pre-existing condition.” …
Continue reading "ACT NOW – Support the Affordable Care Act"
Jeremy's Journey 