Temporal Constellations
Kevin McMullin
“It’s déjà vu all over again.”
– Yogi Berra
In October of 2015, my wife and I celebrated my 59th birthday with our daughter, her husband, and their one day old son. During my birthday nap I had the most amazing dream. In it I was flying and being bombarded with rays that made me tingle all over. They seemed to be filling me with health and vitality. I woke up feeling energized, pumped and optimistic. I was sure something momentous and positive was brewing for me. That day is the last time I remember feeling good.
Have I mentioned my 88 year old father in Chicago? Sometime in October he began to feel increasingly tired and complained of general pain, especially in the chest and left abdominal area. I came down for a visit in early November and it became clear that Dad was going to need some help. I shot home just long enough to hit a deer and headed back south to the windy city.
A couple of weeks after my dream I woke up to a completely different acoustic world. I had some serious tinnitus in my right ear. Sounds that never bothered me before, now actually hurt, a condition known as hyperacusis. Musical notes could be especially painful. I was nauseous, dizzy and tired all the time. I couldn’t hold my grandson while standing for fear of falling.
Of course, we took my father to the doctor. He had a new primary care doctor to replace the one that had recently died. The new doctor didn’t have a very good handle on my dad, his history, or his problem. We traded off visiting the doctor, visiting the emergency room, visiting the doctor, visiting the emergency room…
I went to urgent care at my hospital where I saw a nurse who set up an appointment with an audiologist. The audiologist found some hearing loss in my right ear in the higher frequencies. He noted my career (I’m a musician), and with smug confidence used that to explain my unilateral hearing loss. He had no explanation for the other symptoms I’d been having. He measured me for custom earplugs to ease the hyperacusis and told me to come back in three years. He didn’t know what the fuck he was talking about.
It’s the diagnosis that drives you crazy. We’d take Dad into the ER with an onset of severe pain, they’d do the blood panels, the xrays…
More CT scans, the EEGs,
The EKGs,
The prescriptions,
Norco for the pain,
Flonase to clear up my sinuses,
The Doctor(s) shake their heads and prescribe new tests.
All this time you’re wondering, “What the hell is going on?”
“Is it just old age?”
“Am I making this up?”
The uncertainty is enough to lop a few years off your life. Plans? Ha! Just getting from one day to the next constitutes success. You get cozy with your pharmacist, learn the names of her kids. You recognize the look of alarm when you tell the hematologist how many fentanyl patches your dad is going through.
I’d already made an appointment with a new doctor that I was interviewing to replace the primary care physician that had moved out of town. I saw my new doctor in December. Instead of spending time getting to know each other I dumped a heap of full blown idiopathic, scary symptoms at her feet. We got acquainted on the fly. More of the same blood panels plus new improved ones. She tapped knees, I pulled on her thumbs, lifted my legs against pressure. All of which I’d done many times before and would do many times again. She referred me…
Finally a CT scan showed a very enlarged spleen. More new and improved blood tests. We were introduced to a hematologist
An ENT,
An oncologist,
A neurologist. He ordered an MRI. “We won’t find anything on it,” he explained as he scheduled a sleep study for me. He bet my wife a quarter there would be nothing on the MRI.
My dad has been diagnosed with a Lymphoma.
The MRI showed an acoustic neuroma, also known as a vestibular schwannoma. One person in a hundred thousand gets them.
When stuff like this happens what you want is for the doctor to say, “My God! You have Splenal Marginal Zone Lymphoma!”
“Holy shit! You have an acoustic neuroma!”
“We have to start treatment tomorrow!”
“Clear the operating room! Let’s get that sucker out!”
What the doctors actually say is,
“We need another MRI.”
“We’d better do a PET scan.”
We were referred to neurosurgeons.
SMZL’s occur at a rate of 1.3 per million. He’s a regular block off the old chip, my dad is.
“It’s the best kind of brain tumor to have,” they told us.
The doctor looked at the PET scan and decided we should do a biopsy.
None of the surgeons in my provider network were qualified to do the surgery I needed.
At this point we’re not sure of my dad’s diagnosis, and have no idea when or if treatment will begin.
The neurologist never paid my wife the quarter he owes her.