Moving Staircases – A diagnostic tale.

On June 6, 2003 I stepped on an escalator that had no landing, free-falling as the endless flights of stairs kept passing by me.

It was the day of my first MRI, and I was willing to do anything anyone with a lab coat and a stethoscope told me to do. As frightening as the pace was, it felt good to be doing something about the headaches. If I could just hold on to the moving banister, everything would be O.K. My initial primary goal was to cause my mother no alarm.

Until this point, the main criterion for selecting and staying with a primary care physician has been straight-forward: What is your philosophy on antibiotic use? While I know the cons of over-use, not just personally but globally, I can’t help but try to derail any icky phlegm thing before it turns into pneumonia, which can happen in as little as 6 hours from the first wheezy onset.

In exchange for keeping me out of the ER and breathing, I go to a doctor that talks for at least a half hour every visit. He catches me up on his children’s achievements and civil war reenactments that may (or may not be) taking place in our county this summer. He only has one speaking volume: sonic boom.

On 6/9, when he personally called me and told me in an unprecedented calm, quiet tone that he is putting my MRI report in the mailbox and can I pick it up tonight when I get home from work, I feel a slight shifting of gears beneath me, the stairs are moving at the same pace, but they are laboring harder like my bronchial tubes on the first fall day.

The rest of the conversation is a blur. My typed notes resemble a Jack Kerouac novel with less punctuation. Directly from my journal:

He tells me to get to a neurosurgeon ASAP. He told me to skip neurologist, go directly to surgeon, because of the findings on my scan. He told me the dimensions of the irregularity, but since that was math, I didn’t really listen.  Before leaving work I see Kevin, and I remember his brother-in-law is a neuro-something. We have actually talked before about his brother-in-law seeing me for my headaches, but I never got around to it. Within minutes of talking to Dr. K I am on Kevin’s cell phone talking to Kevin’s brother-in-law, Dr. J. He tells me to fax my MRI report over in the morning, and if he needs to see me right away he will, or we will make an appointment.

This all sounds reasonable. I am getting used to the warm gentle hum of the moveable stairs beneath me. I haven’t had my first test, my first shot even, but I am feeling very much like a patient.

6/10 Dr. L. personally calls, asking: What are you doing tomorrow at 1pm? I must have stood noiseless on the phone, and he said “breathe.”  I did. I was concerned about my job (just one week before my boss found me on the floor of her office); I was worried about my mom, and how much she was going to worry about me.

6/11 After learning many of the possibilities of what this thing in the brain could be, it’s back to the MRI, this time with an IV. Now they are starting to poke me and I want to say “Only kidding! Head’s all better!”

Don’t you hate when this happens? An article comes my way about the chemicals in the IV contrast being banned in some institutes. Years back our baby needed a complete transverse blood transfusion and simultaneously, the first baby to ever succumb to HIV died in Miami, just a hop-skip-and-a-jump from us. The lessons here might be stop scanning the Mayo Clinic publications and get a subscription to People.

I met the neurosurgeon in a ridiculous room filled with office stuff and used equipment that likely dated back to the Eisenhower administration. After that there was a meeting with a radiologist. He showed me what the mask looks like that they put over your face to protect it. At this point nobody has said this is the diagnosis or this is the treatment plan (at least not to me). I am in complete denial that I am going to eventually have radiation. Everything reminds me of work; I had just taken on a new direct report and I didn’t want anyone to ruin him.

6/17 New MRI scheduled-this is the day I learned that each hospital will require MRI’s from their own equipment, both magnetic and billing.

6/18 Scheduled meeting with the team.

My notes drop off here, and much of what I can piece together is a blend of events leading to my biopsy and my surgery 3 years later. It was after the chemo and mid-way thru the radiation when I lost my balance. I’d love to tell you what happened when I got off the escalator, but I never did.

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2 thoughts on “Moving Staircases – A diagnostic tale.

  1. Oh Jaye – This escalator thing sound like the worst kind of nightmare. My heart cries for you and what you went through. Love you.

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