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14 years out

Published on May 2, 2019 in Share Your Story

It began with the headaches. In November 2004, I started having terrible, deep-throb, pounders, ones that would actually wake me up in the middle of the night. They would vanish for a few hours with heavy-duty Excedrins, only to return a few hours later. It was slight cause for alarm but we (wife M and I) explained it away through any number of culprits: stress at work, bad posture, bad diet. After all, I was a 32-year-old man in relative good health. What could really be wrong? Later that month I returned from walking the dog in the morning. Standing at the kitchen sink my eye fluttered.

A white electric line – kind of like a floatie – was pulsing, moving. I tried not to let it bother me but I also didn’t tell M about it. Somewhere within me a black pool of fear was spreading but I didn’t want to give name to it by acknowledging it A few days later the eye thing happened again. Then my left eye became blurred. Couldn’t focus on anything. The headaches continued. The black pool spread. I went to the optometrist. He could find nothing wrong. I went to the ophthalmologist who determined that I had optic neuritis, a sort of generic stress of the optic nerve, which can be a harbinger for MS. an MRI was scheduled. 10 days later I was being inserted into an MRI machine. That night we got the call. The MRI, a voice said, revealed a tumor-like growth. Someone would be calling in a soon for a neurological consult. The bottom fell out and I began to plummet. 10 days later I was sitting in a neurosurgeon’s office: you definitely have a tumor.

It could be pituitary, chondrosarcoma, chordoma. I won’t know until I’m in there. early feb 05 I have transsphenoidal surgery. They are only able to resect 80%. It is most definitely not a pituitary tumor. It is probably chordoma. The best approach is to have another surgery and resect as much as possible of it, keeping in mind that it abuts the carotid artery and the optic nerve. late march 05 I have a craniotomy. They get ‘most of it’ but there is still a tiny bit. It will have to be radiated. The pathology comes back: chondrosarcoma. In mid-April, I meet w/ Radiation Oncologist, Dr. O. He floats the notion of going out of state for treatment. This is an instant gut-punch since what we want to do is to start the stereotactic radiotherapy right away and get back to our ‘normal lives’.

Dr. O insists chondrosarcoma has a “high-success rate” with proton beam radiation. He will send my films to Dr. L at MGH in Boston and see what Dr. L thinks. Dr. L wants us. We drive out from Portland to Boston in a rented van. We stay in the Residence Inn across the Charles River from MGH. One T-stop away. Just over the Longfellow bridge. 35 treatments: 25 proton, 10 photon. Dr. L is everything that he was rumored to be: warm, efficient, masterful. The level of care and attention I receive is incomparable. M. and I begin to fracture, held in place by percentages, the hair-line margin that allows hope in.

The year has been different for her than me, each of us in different roles with stresses particular to the role while orbiting around the identical event. We know however that we will make it through. And we will see life differently forever. And we will recognize the miracle of breath. And we will see each morning’s sun-rise as a gift. And we will forever honor the delicate perfections of friendships and family and love. And we know this with all our might and all our deepest certainties but just in case we need a back up plan. Just in case years later ‘real life’ should intercede and we should find ourselves suddenly concerned with an unpaid bill or sitting in traffic or waiting at the post office or wondering about the look on a stranger’s face, we decide to write it all down. So that we never forget.

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