Radiation, Recovery, Resilience, and The Petty Tyrant

 

Two years ago today, I completed the radiation therapy for my glioblastoma.  The treatment itself lasted about twenty minutes per day, five days a week, for six weeks.  I also took a relatively low dose of temozolomide, an oral chemotherapy medicine, daily for the six weeks. I started taking it a week before the treatment started and it wasn't too bad - just made me a little tired.

I would check in at the desk, then wait a few minutes to be called and then a team member would escort me to a control booth 

and then take me to the actual treatment room.  I’d lie on my back on a plastic platform that was cut out in a grid pattern, and they would fit the plastic mask to my head and then snap it to the platform to immobilize my head as much as possible to ensure the radiation was applied to the correct area. 

The technicians would go back to the control booth and spend a few moments running test sans to make sure I was positioned properly and calibrate the machine.  They offered to play music the first couple of sessions, but I wanted to experience my medical journey as unmediated as possible, to feel it in all its rawness, with every sense.  

The machine came to life with a mechanical whir, and a spindle would drop down and rotate through three different instruments – one was like an x-ray machine; the other was an opalescent flat screen - more like a glass plate really - with bright green, almost holographic grids behind it.  I had to sit very still during the 20-minute sessions, and I began to treat it as a form of meditation. I started looking forward to these brief periods of introspection. I had to sit very still during the treatment, and I began to treat it as a form of meditation. I started looking forward to these brief periods of introspection. The screen fascinated me because it seemed so deep, very three dimensional.  The spindle made me think of the projection system in a planetarium or the rotating lenses on an old-fashioned microscope.  Once the screen part was in place, and I think the thing that looked like an x-ray camera would shoot a series of red and green lights almost like lasers across and beyond my field of vision.  Although everyone says you can’t feel it, I often felt a slight stinging or burning along the arc they shot the radiation at. 

 

Two years later, it’s hard to remember the details: I was too tired and “in the moment” to write anything down. To be honest, I thought I’d vividly remember it all forever, but clearly, I haven’t.  The things I remember most are the lights coursing across my eyes, the mysterious dimensionality of the patterns and rainbow iridescence on that screen, and the unpleasant, acrid odor during the treatment, something I’d never smelled before but that smells like a combination of exhaust fumes and ozone.  It was unpleasant enough that I learned to breathe very shallowly through my mouth to keep it from infusing my sinuses and lungs. I drove myself to and from the appointments and continued to work my job throughout the treatment.  I would leave the clinic with a ravenous appetite and started bringing carrot and celery sticks along which I would dip in almond butter and devour as soon as I got to the car.  Those extra calories restored my energy.  I also did about an hour and a half of deep breathing and yoga – stretches and body weight exercises every morning, followed by a cold shower.  I think it helped a lot.

The combination of radiation and chemo made me quite tired, and I lost a lot of hair on the right side of my head, which is the side they were treating.  After about a week, my scalp got increasingly tender, kind of like a combination of sunburn and abrasion.  The oncologist gave me a few sample tubes of calendula lotion, which really helped with the irritation.

The folks at Johns Hopkins were amazing.  Everyone was really friendly and treated me like a human, not a patient, but you also could tell that they’d learned not to get too attached to the patients, as the treatments don’t usually last too long, and nor, unfortunately, do many of the patients.  That said, they began in a very professional, impersonal way and it took a week or two for them to loosen up.  Part of it may be because the regimen has to be very precise.  At first, it was a very lonely and alienating experience, but it was never unpleasant, and the team warmed up over time.

Carlos Castaneda writes of “The petty tyrant”, a person who operates from a position of authority and causes distress using psychological pressure. They can serve as a distraction – an injustice to fight as part of the anger or bargaining portion of the Kubler-Ross grief model. In Castaneda’s model, the tyrant forces a warrior to detach, allowing them to remain calm and focused and prepare themself for the ultimate unknown by learning to live with maximum capacity and joy, rather than fear. 

I ran up against the tyrant because I wanted very badly to document my experience, but the staff absolutely forbade me from taking any photos.  At first, they told me it was for privacy reasons, that other patients’ information might be on the screens around the room.  I acknowledged that this was true at times but pledged not to include any screens in my videos or photos.  Denied.

Then they said it was due to the license agreement for the machine itself, some kind of nondisclosure agreement. They wouldn’t budge – I took it to my oncologist, even the head of the oncology department, who claimed to have taken my case to the hospital administration.  No go. 

They did let me do a rubbing of the table I was pinned to, and I used rubber stamps to put a Brion Gysin-style permutation of “rub out the tumor” onto the grid.  I continue to use it as a mantra for healing and to keep my fighting spirit fueled. 

I eventually dared steal the fire from heaven, so to speak, by putting my phone on record while it was in the breast pocket of my shirt, and captured a bit of the control boot and the treatment room before I chickened out and turned the phone off before they snapped the mask on. 

We had a little celebration the last day of my treatment. The techs threw confetti, and I rang a titanium bell.  My thirty days in the hole was done.  

I’d get a thirty day respite, and then start six months of chemotherapy.  More on that in a future post.

Although I sacrificed a lot of hair (it’s still mostly gone), the doctors said I tolerated the treatment well, with remarkably little fatigue, or damage to my scalp, and still managed to make it through work every day, thanks to my accommodating managers at Homeland Security.

So here I am.  am so lucky to be here, and to have the amazing love and support I've gotten from all of you. 

I refuse to cast myself as the sick guy until I actually AM the sick guy, and that's not going to happen anytime soon if I have anything to say about it.   I’m sharing this because a lot of you are curious about my journey but mostly to help people who may be up against this themselves.

So please, no sympathy, no thoughts and prayers, no predictions or projections, no medical advice. Right now (knock wood), I feel great, and I continue to live the life I should had been living a decade ago. I hope my story inspires all of you to live your life like there's no tomorrow: treasure each day, each moment, every contact you get to make with this fascinating, magical world we’ve inherited.