Recurrence. So now what?

In a previous post, I wrote about experiencing my first recurrence. Even though we always knew it was coming, it seemed cruel that it should happen almost exactly a year to the day after I experienced my first seizure.

So, what do do? First, surgery (again).

The first step was to have another surgery and remove as much of the mass as possible as soon as possible. Thankfully, I’ve been equipped with hardware that makes it easy to access my brain. That’s right, that titanium plate with screws in it just needed to be unscrewed and voila! I had the same surgeon, and she even got to cut along the same incision as last time with predictable results:

Stitches instead of staples this time!

Preserve viable tumor tissue

At first, my surgeon told us MGH had a blanket ban on preserving tissue of any kind for any research purpose (including internal studies) due to COVID-19. We were pretty crestfallen because some promising treatments (like so-called personalized vaccines) require frozen, viable tumor tissue. After some cajoling and pleading, my surgeon went to bat for us and got the senior VP of research at MGH to make an exception for my case. She deserves mad props for that!

So, on the day of the surgery, I took a big old kit with a cooler, and vials, and preservation media into the O.R. with me. Big R. got the pleasure of meeting the surgeon in the parking lot after surgery for the hand-off like some sort of weird drug deal or organ trafficking scheme. She hightailed it across Boston to a FedEx, and within 24 hours my tumor tissue was safely frozen and stored by a company that facilitates drug sensitivity testing and the creation of personalized vaccines among other things.

Chemo. Again. Ugh.

This week I’ll start chemo. Again. I’m sure it’ll suck as much as the first time around, but the kicker is that this time there’s only a 30-40% chance the tumor will respond. You see, chemo puts evolutionary pressure on the tumor. Cells that randomly mutate may no longer respond to drugs that previously worked, giving them a survival advantage. Cancer is wily, but I have to constantly remind myself that it doesn’t have agency.

Anyway, I’m used to shitty odds by now. I can’t get too discouraged. I’ll just continue to throw everything at this in hopes that something works.

A medical vacation to Germany?

In the spirit of throwing everything at this cancer, there is one treatment that has shown some promise. This is something called a dendritic cell vaccine. It’s pretty damned complicated stuff (especially for someone who hated high school bio). But, these dendritic cells can be loaded up with tumor antigens and used to present those antigens to T cells (a component of our natural immune system), thereby “activating” them. You can think of it like showing a lock (the antigen) to the locksmith (T cells) so they can make a key (activation) that can be inserted into any other cells (hopefully, the tumor) that also express that antigen (and kill them). Wild, right?

Image Credit: Frontiers in Immunology (

Well, it turns out that this treatment hasn’t yet been approved in the U.S., so one has to engage in a bit of the old “medical tourism” to get access to it. I’m thinking of it as an opportunity to brush up on my Deutsch and spend some quality time with Big R. Oh, and maybe to live a bit longer!

“Just do the next thing.”

This was advice I got from another cancer survivor. It makes sense, but since we’re kind of in uncharted waters now, we actually have to define the next thing and then do it. Sure, it’s a bit harder than just doing what we’re told. But, we didn’t make it this far to stop just because there’s no map.

Onward. Ever onward!

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