Outrageously Blessed/My Brain Tumor Surgery Story

Hello Friends,

Life is what happens when you’re making other plans.
-John Lennon

My plan here was to pick up where we left off after Part I of my nature and spirit encounter. (If you missed it you can catch up here.) I was going to tell you about how after I left the woodland, crossed the stream and entered the meadow, I spied not one but two young bucks grazing in the tall grasses not thirty feet from me. And how I stopped in my tracks, awestruck. How while one buck couldn’t be bothered, the other whipped his head up and we locked eyes. Me quivering with excitement, him assessing danger levels. I had the impulse to sing to him. As I began, his ears, like a radar dish titled in my direction and he listened. Tears trickled down my cheeks, how much joy can one day bring? Soon enough, he resumed his breakfast and before long the two of them lifted off the way deer do, white tails skyward, legs and feet tucked up and leaping elegantly disappeared beneath a weeping willow swaying in the breeze.

That was my plan.

But instead another story, one that began two weeks ago today is what life had planned.  With worsening flu like symptoms and a negative COVID test, I returned for a second time to the emergency room, now with vision problems (imagine looking at your surroundings as if the brightness value on your computer screen was turned up high and one eye unable to detect anything in the lower half of its vision field).  After laying on a hallway stretcher for ten hours under nuclear white fluorescent lights and next to the lab tube delivery system (Thwunk! Twhack! Thwunk! Thwack!) we were unceremoniously given the MRI results:

You have a large brain tumor.

A what??!

I was tempted to look around and see if there was another patient this doctor had mistaken me for. Surely so. No?? It really is my MRI?

Quicksilver blips: Cancer?  Skull drilling? Head shaving? Well, if so, Niko and I will just have to get head tat’s together. That made me feel a little better. Ok.  Deep breath. Back to the moment.

Time to get me to Boston. But as 2 am rolled around, no one wanted me. No beds available. We decided to try again in a few hours once new discharge orders were posted. Steve crawled home to get a few hours shut eye and mercifully a room opened up here and I cocooned within four walls, a door and even a curtain. 

Finally, Tufts Medical Center agreed to take me. I had wanted Mass General, but now was no time to quibble, it felt right.  And from this point a high vibe and very tangible wave of excellent care on both sides of the veil began. From Rory and Cory (for real) my EMT ambulance guys (who gave me the siren VIP treatment through the city to cut through traffic and to which they admitted sometimes they use even when they don’t have a patient :)) to each nurse, doctor, bathroom escort and meal deliverer, I felt protected and oddly devoid of fear or worry.

But who had time for that?  It was boots on the ground. Tufts MRI with contrast painted the picture more clearly: a 4cm (@1.5in) beast that wrapped itself around the pituitary and carotid arteries and was pressing the left optic nerve. That explained the sickness and rapidly increasing loss of vision.  In a matter of hours it was into surgery to relieve the optic nerve, and take out as much tumor as possible and to get tissue for a biopsy. Too dangerous was any attempt to remove the entirety of the mass. But on the plus side, the overall the surgery considered, “low risk”, meant no skull crushing, or head shaving (opting to perform the procedure through the nose, blech). 

I took a mental snapshot of Steve just before I was wheeled in to the surgical suite.  What ever life I had before was a closed chapter now. What lay ahead was anybody’s guess. We hoped it would be just another boring day at the office for Dr. Safain and team. 

(Tufts gifts patients with mandala, puzzle and word search packets complete with colored pencil sets(c). 2021)

Three hours later the news was good- yep. another boring day at the office.  My vision returned to normal, and no unexpected concerns. 

Biopsy results were another 10 days out. But we cleared all the first hurdles. 

Niko came in from New Mexico for a few days-a break from his summer job as a ranger at Philmont, a Boy Scout camp he actually attended as a camper in 2015.  The boys surprised me when he came in on my discharge day. We hugged and I wept. We all needed this time together.

Outrageously blessed. My meditation practice was strong and sustained me throughout:

I was Thich Nhat Hahn walking to the bathroom arm in arm with my bathroom escort- heel-toe, heel-toe. 

I invented something I call: No Waiting, Be Curious Instead: Oh, how no control a patient has. We can’t get up to raid the frig,  pee when we feel nature call, brush our teeth, take a shower, get a drink of water. T.V. too loud next door? Hit the nurse button. Rather than feel like every request was followed by a waiting period, I got curious.  What could I hear? What was happening around me right now? How may beeps did my heart monitor make? Could I tell by the sunlight angle what time it was without looking at the clock? 

Metta practice:
May you be happy
May you be at ease
May you be free from suffering
May you be at peace- was my version.

The hospital was full of suffering. It only felt natural to offer aspirations often.

Breath brought me back to the moment over and over.

The prayers and love of my friends and family felt like filaments of white that surrounded me and I felt wrapped in love. Meals, flowers, cards, rides, texts of encouragement. I am outrageously blessed.

Steve and Niko have been pillars, poor Steve! No rest for the weary but he never complains. Outrageously blessed.

Healing has begun. When I get restless and often times during the wee hours I find ease stitching, coloring, thinking about what new creations I want to experiment with, about the days when I can resume my practice and be with you. 

We heard from pathology: benign. It’s possible the tumor remnants will die off on its own with out a blood source. We’re continuing to pray and intend for that option. 

What’s next? 

I’ll be back soon to visit.

Until then, take good care,
Deborah Fay

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