Don’t worry, I’m still alive

“Are you still alive? The blog looks untouched in over a year so I’m thinking not.”

This was a message I received through my blog just a couple months ago. It was a bit jarring. To live with a disease where a year of silence may equate to death is a plausible and stark reality of my life with a high-grade brain tumor. But I’m actually appreciative of this person’s message because it gave me a kick in the butt. A nudge to get back to this blog (… and writing in general) because the past year has been a rollercoaster

When I last posted in March 2023, I was in a state of uncertainty, wondering whether or not it was time to start chemotherapy following surgery. I said, “I don’t know how much time I’ll have until I need to start chemotherapy, but I do know I can use my time as best as I can because I’ve done it before.”

And that’s what I did:

Here’s a quick gallery to catch you up:

This is not a comprehensive accounting of my life over the past year, but may give you a sense of why I have been away from this blog: I’ve been trying to live my life fully. I have grown my relationship with Chris, spent as much time as possible with my family, sailed, started a new job, and bought a home. I’ve also been advocating for the brain tumor and young adult cancer community. I’ve spoken with the American College of Surgeons, National Cancer Institute, and the National Academy of Science, Engineering, and Medicine among others. While I haven’t used my writing recently, I have still been trying to use my voice for change.

I do this because change is needed for me and thousands upon thousands of others. In September, I started the latest therapeutic for brain tumors called Vorasidenib. It’s the first drug developed specifically for the brain tumor community in a long time, and having promising results. Since it is not FDA approved yet, I go into Dana Farber every month for blood tests and a check in along with a MRI every other month.

Around the same time I started the drug, my seizures in my right arm returned. Since September 1st, 2023 I have had 79 seizures in my right arm and sometimes my hand. They’re relatively short (about a minute), and I tend to regain full strength of my arm a few minutes post-seizure. I continue to eat when they are going on, and I have even continued a work presentation at a conference while I tried to use the podium to stabilize my arm (…I think they just thought I was super nervous haha).

We originally thought these seizures could be a good sign. Perhaps the drug was causing micro-inflammation at the tumor as it attacked it. That may be the case, but we also know the two spots in my brain that I mentioned back in March 2023 are changing ever so slightly. These two spots are tumor taking up contrast, which means it’s developing and hijacking some of my vasculature.

So despite a year and a few months passing since my last post. Despite all the life I’ve lived since then…I’m in some ways back where I began. In a place of “wait and see” or in other words, not enough growth to justify a change of plan.

Our hope is that the Vorasidenib is slowing down the rate of growth, and perhaps may even have a latency effect to attack the tumor, but nobody knows.

The hard part about diving into life fully is that I want to keep living it. I’ve always dreamed about finding someone I love and building a life with them near all my family, and I have that!

But I’m scared to loose it.

I’m scared to take further leaps (vacations, marriage…kids) because will I be healthy enough to live all of that out fully?

One of my best friends shared with me an Atlantic article about Suleika Jahoud. One of the lines that caught my eye was, “So here we are, back where we started: How does one live with an everyday, every-hour awareness of how much healthy time might remain—perhaps all the time that might remain—as a very specific math equation? How does this translate into creative habits, a modus vivendi, a philosophy of life?”

I’ve tried to live life the best I can. To live my values of family, love, and doing work that benefits others. But I know the math equation of my diagnosis may not necessarily be in my favor. The only available treatment left after the one I am on is CCNU chemotherapy, which may not be the most effective, and is not a cure.

There is no cure.

That is why we need more research, specifically for oligodendrogliomas. I was recently told about Oligo Nation, the only foundation in the world solely focused on this disease. They have catalyzed research for Oligos, currently bringing together 17 leading scientists and institutions in the field to develop translational research and trials for Oligo patients.

On June 20th, I will be honored with their “courage award” at their inaugural Boston gala. I am humbled to receive this as I know there are so many patients and caregivers in this community who inspire me. But the importance of this is to raise as many funds as possible for research. Oligo Nation is turning these funds into concrete trials that hopefully one day I can benefit from. So please consider coming to the Gala and/or donating: https://e.givesmart.com/events/BUK/.

If you know any corporate sponsors/donors, please let me know!

Despite what happens with my tumor(s), I will try to live life as best I can. To be alive right now is a privilege. Since I last wrote to you, I have lost several close young adult friends. Their passing isn’t fair. They should be here with their families. To let the uncertainty of my tumor interfere with living true to my values is a disservice to their memory.

So I’ll keep soaking in life while advocating for the cancer community. It’s hard sometimes because the realities of life (i.e. paying a mortgage or being exhausted at the end of the workday) sometimes gets in the way. But, to answer the person who left the message: “Are you still alive?” Yes I am, and thank you for the reminder of how cathartic it feels to sit down with a latte and write. I hope to continue.

With love,

Jeremy