“We’ve always known this day would come.”
Author’s Note:
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.
xoxo. holding you and your family in my heart.
Thank you, Sarah!
Hi Aaron. May this be the second chance that brings total healing. Godspeed, peace and strength to you all.
Thank you, Linda!
My fingers are crossed for you, my friend. Stay strong and brave. The forthrightness with which you’ve maintained a blog of this whole ordeal impresses me immeasurably. I wish you all the luck in the world on your upcoming surgery, my man. Take care.
Thanks, Scott. I’m welcoming all the help I can get!
You may be physically alone for surgery, but we are with you in spirit, and there are piles of us pulling for you and sending lots of strength to you and your family. Hang in there!
Thanks, Rick. It’s wonderful to have such supportive colleagues!
Aaron,
Although I’m not really sure of the right words to say, I do want you to know that you are in my thoughts this week and will be especially on Friday.
Wishing you the absolute best possible outcome and recovery. You Got This!
-Kay
Kay, no need to find the right words. Just knowing I’m in your thoughts is enough for me. Apparently, recovery from the second surgery tends to be easier than the first. Who knew!?
Take care my friend. We are all rooting for you.
Thanks, Siddhartan. These are crazy times, but support of family and friends helps sustain me.
Making it through Little R’s birthday under those conditions was such an incredible gift. Wishing you all the strength in the world to face this next surgery and heal. Thinking of you and your family.
Thanks, Anne-Marie. That little dude keeps me going!
Wow, this seems random. I was googling bike frame building jigs based on the Arctos jig and found your blog entry on your build. BTW, thanks for sharing your design!
Then, I saw your latest post. I am a skin cancer ‘poster child’ (5 so far) and have been through topical chemo (stimulates the immune system to attack pre-cancerous cells).
Anyway, I will be thinking about you, Aaron, this Friday when you go for your surgery. Be well, press on and be hopeful. All the best.
Gene, I’m sorry to hear about your cancer but glad you found the frame jig design. I intended to make another iteration of the jig for my class this semester, but COVID-19 put an end to that. Thanks for your positive thoughts, and let me know if you have any questions about the jig.
Thinking of you and the family. Ditto on Linda’s comment. Onward!
Thanks, Erhardt!
Your articulate and honest writing is a reflection of the strength in your soul. Sending the biggest virtual hugs and positive-ist thoughts for Friday.
Thanks, Kristin! I’m glad you appreciate the writing. Selfishly, it helps me process this whole ordeal.
Thinking of you, and thank you for sharing your experiences. Sending love and strength for you and your family.
Thanks, Jess. Back atcha and your family!
Strength, love and prayers to you and your family! You are stronger than cancer!
Thank you, Linda! Your support means so much to me and my family.
Still praying for you and your family my friend. Every day is a gift!
Thank you, Brad. Your prayers mean a lot to me and my family!
Thinking of you, A-A-Ron (and R &r). Immunotherapy for the win this time.
Thanks, Jojo! We’ll see about that immunotherapy. I’m hopeful, but GBM is also wily!
Keeping you and your family in prayers. You have shown enormous strength and positive outlook. You are in all our thoughts and hearts.
Thank you, Marcella. Every little bit helps!
Your strength and willpower are amazing. When your eyes fall upon the grains of wood floor or the loops in your sweatshirt, gaze for a moment but don’t let yourself be drawn in too ferociously. Your stamina won’t permit it.
I’m one of the heaps of people sending prayers and great thoughts to you and your family, along with many virtual hugs.
You’re the best, Holly! We are happily receiving your thoughts, prayers, and virtual hugs!
Will be thinking of you and your family tomorrow. Sending thoughts and prayers to your healing and recovery.
Thank you, Wanda!
Hi Aaron,
Even with this downbeat news there is something that won’t be denied – the hope that shines through your writing and that is what you need. Wishing you the best tomorrow.
That’s very kind of you, Kurt.
Hi Aaron — just heard this news from Joanne & Caitrin. Will be thinking of you tomorrow, with all extremities crossed. Glad your sister is with you — we’ll miss her in P&M on Monday, but it’s nice to know your family will be together. Thanks for sharing your journey and your strength.
I’m so unbelievably lucky to have my mom and sister here with me (even if they can’t be at the hospital). A small glimmer in all this pandemic darkness.
You’ve Got This Aaron! You have within you a much stronger fight than the obstacle trying to block your path.
Allow the infinite spark of positive energy and prayers from all of us to help fuel your strength and determination.
You will beat this!
Thank you, Brenda. I hold out hope that you’re right, and I am also occasionally struck by how strong an adversary cancer can be!
Thinking of you and your family, Aaron, and sending strength.
Thank you, Deb. We’re over here absolutely basking in the strength, hope, and general good vibes being sent our way.
Praying for you and your family Aaron. I also pray God skillfully moves the hands of your surgeon to successfully remove the tumor and that your doctors formulate a clear and concise treatment plan for you. Sending love and positive thoughts…
I’m so glad I was able to find you on the big world of Google. Over the years I have searched for several of my students from long ago to see their successes. I remember during the summers at Operation Discovery your were always finding various small creatures to examine during playtime outside. I knew you and Melissa, both being so bright, would find success in your adult years.
I’ve been following your journey and praying for you and your family. It is almost a week after your surgery, I am anxious to read future posts from you.
Love always,
Miss Kathy (Comstock)