I struggled a lot with whether to write this post. But, in the end, I decided that the cancer posts on this blog can’t be all positive updates and upbeat outlooks. That’s simply unrealistic. I write here for many reasons: to process my own feelings and thoughts, to keep people who care about me up-to-date, and to do my small part in nurturing a community of brain tumor patients, survivors, and their families and caregivers. I wish every post could be clean scans and conditional probability magic, but cancer has a special way of defying even our simplest wishes.
Just another scan…
A little over a week ago on April 10th, exactly one year and one day since my big seizure (also little R’s birthday), I climbed onto the table and was slid into the MRI tube. Arriving at the imaging facility had been eerie. It was dead. There was a dedicated entrance for patients, staff asking COVID-19 screening questions, masks on offer, and hand sanitizer – lots of hand sanitizer. I was exhausted from a day of working/homeschooling. I actually fell asleep a couple of times, nearly dropping the little bulb they give you to squeeze if you start feeling claustrophobic. Anyone who’s endured the infernal racket of an MRI knows what an impressive feat it is to fall asleep during one.
…with scanxiety saturation
The weeks leading up to the scan were already saturated with scanxiety. I had been experiencing some odd symptoms. Imagine looking at a familiar scene. Your kitchen, from the chair you sit in to drink your morning coffee, let’s say. Then, seemingly out of nowhere, the suggestion of a familiar shape appears at the edge of your field of view. When you direct your attention to it, it evaporates. But, another faint suggestion of a different familiar shape inserts itself again. This loop continues every time you move your eyes.
Or, imagine waking up one morning and noticing, in excruciating detail, the wood grain of your floors. The gestalt of the floor itself recedes entirely as though the wood “floor” were just made of extremely detailed grain patterns. Look down at your knit sweatshirt. It’s not a fabric; it’s an elaborate collection of interlocked loops of individual threads. That’s all you see. It’s sort of beautiful but also alarming and unsettling.
When You Get the Call
I came home from the scan that afternoon, and Big R left to pick up Five Guys for Little R’s birthday (his choice). A few minutes after she left, I got a call on my cell phone from MGH. When you get a call from MGH an hour after your scan despite a scheduled follow-up four days later, you answer it.
Dr. D. was on the other end and said something along the lines of “I’m sorry to tell you this on Friday afternoon, but I didn’t think it was right to sit on it all weekend. Your MRI shows regrowth.” He went on to tell me the mass is round and about the diameter of a quarter. It’s in the same spot, so he thinks it can be resected (how many people get to claim they’ve had two brain surgeries!?). However, he needed to consult my surgeon to be certain.
You might imagine that I collapsed (or did something equally dramatic) when I got the news. I didn’t. Honestly, I had been expecting it. That didn’t make it any easier. It just made me more prepared to hide my disappointment and fear. In fact, I made it through dinner, a Zoom-facilitated singing of “Happy Birthday” with Little R’s friends, and Little R’s bedtime routine before I could even tell Big R.
“It was never a matter of ‘if’ but ‘when.'”
I recounted the call to Big R. There were tears, questions, and lots of hugs. Finally, Big R said to me, “Well, we’ve always known this day would come.” Then, we got to work. We resumed editing our Google Doc of questions for Dr. D. We made sure appropriate family members could add their own questions. We started planning who to tell first and when. We anticipated the impact on our 10th wedding anniversary trip (generously assuming COVID-19 hadn’t already crushed that one). Springing into action always seems to help, but maybe it’s also that doing something allows me to avoid being overwhelmed by feeling the sadness of it all.
So, what now?
Well, I guess I was really hoping I wouldn’t have to answer that question so soon. But, here we are. We met with Dr. D. and Dr. J. (my neuro onc and neurosurgeon respectively). Dr. J. advised another surgery – this time, she just has to take a few screws out of a titanium plate. “Easy peasy lemon squeezy” (as Little R likes to say). Then, it’s on to another round of chemo, crossing our fingers the tumor hasn’t mutated to be resistant.
Right now, my surgery is scheduled for Friday, April 24. I’m holding out hope that the COVID-19 peak here in Boston will have passed by then and putting all my trust in my care team. After all, they’ve done a pretty damned good job so far!
One bright spot in all this: this time we know we need to have the tumor tissue frozen. Experimental immunotherapeutic approaches like personalized vaccines require living cells, and most hospitals typically only preserve the tumor in paraffin. It’s kind of odd to articulate, but it feels almost like a second chance for us. If any of you reading this have experience freezing a tumor or getting personalized vaccines, please reach out!
Onward. Ever onward.
On Thursday, April 16th about an hour before I was due to teach class, I suffered another seizure. Big R. was home this time (one tiny benefit of the pandemic) and called 911 immediately. I was rushed to MGH where a CT scan showed the regrowth was basically unchanged from the MRI a week before. They kept me overnight, and when I was released I was greeted by my mom and sister. Pandemic silver lining 2: cheap emergency travel.
As I write this I’m preparing to face my next surgery alone while waiting for the tumor preservation kit to arrive. It’s going to be a hard week for everyone involved. But at least I kind of know what’s coming, and I’ve got a loving and supportive family to come back home to.
Things are bad, but they could be worse. For now, onward. Ever onward.