The Three Minute Phone Call

In my tenth summer, my Dad was a hard working single parent and I was motherless, and largely, unmonitored feral child roaming the “mean” streets of Deer Park and Pasadena, Texas. In that time, cigarette vending machines could be found pretty much anywhere up and down Spencer Highway. For 35 to 50 cents, one could readily experience the “smooth flavor” which was being blasted across TV and print advertising. I could sell a few coke bottles and be set. It was an addiction I was never able to overcome until January of 2006. After years of therapy, nicotine gum, hypnosis, acupuncture, and other gimmicks; the long trick ended with a three-minute phone call. As if a switch had been flipped in my head, a forty-year addiction ended. One rainy day, my ENT called and told me (quite “matter of factly”) that the white patch on my tonsil was a squam cell carcinoma. The “national standard” for treatment, was a trimodal therapy including chemo, surgery, and radiation.

Immediate concerns were centered around surviving the chemo, but this was the easy part. The chemo, with its weeks of blinding headaches, spinning nausea, and a constant metallic taste to everything was nothing compared to what followed. Each of the side effects faded in time. Sublingual antinausea drugs eased the nausea and diarrhea. The headaches eventually faded to a point where Tylenol would help. The metallic taste hung around until someone suggested that I experiment at a buffet. This worked until the taste buds and olfactory senses returned. After a few months, I was back to my culinary shenanigans.  

The surgery was planned after the chemo and “targeted” radiation had “beaten down” the tumor. Unfortunately, what had been anticipated as a simple outpatient day surgery was a bit more complicated. In the weeks of chemo and radiotherapy, the cancer had reached out to the proximal lymph nodes in my neck. The surgeon, after months of telling me how simple it would be, scheduled a major dissection of my neck. I was admitted the evening prior and early the next morning, they removed a “conservative” 56 lymph nodes. I was no “Adonis” before, but they haven’t figured out how to do this without disfiguring most patients. Sadly, I was no exception. On awakening, in the postanesthesia fog,  I remember a young Asian man standing at the end of my bed. He told me his name, which I cannot recall, and that he had performed the surgery and that recovery was going to be difficult. While I have only this memory of a mysterious stranger, the scars remain visible to this day. I am told they add character to my appearance, but I was kind of fond of the status quo antebellum. On my first follow up visit, I asked about the Asian doctor but was informed (emphatically) that the original doctor had done the surgery. Post-surgical pathology reports found only 1 of the 56 lymph nodes was actually cancerous.

In the initial assessment, the radiation seemed easiest. For 45 consecutive weekdays, I would report to the Bellaire outpatient clinic and have my head bolted down to a table while a computer directed individually modulated beams of radiation aimed (in intersecting patterns) at the tumor. It all seemed very precise at the time. It was as close to “safe” as I was going to find. There had been a brief advisement and documents signed to assure that I had enough information to make the best decision. What I was hearing and understanding was that without the therapy, I would likely experience a recurrent or secondary cancer. I did what most people would do. I signed the papers acknowledging the possibility of injury and releasing any liability. As I lay on that table, I watched as a device called a “linear accelerator” moved in odd and phrenetic arcs around my neck. As a musician, I would escape into the curious song of the thing. The varieties of pitch and timbre often taking me far away from the there and then. What I didn’t know was that the radiation which was saving my life was taking a toll on my spine. After the treatments ended, I went back to school. Even though my shoulders had been impinged by the surgery, I was able to resume playing all of my instruments. For a while, I thought I would survive the ordeal of cancer. I thought that I might escape the horrible specter. At that moment, I thought it had only “winged” me.  One day in 2008, I noticed some difficulty in standing. Not long after, I dropped an expensive camcorder.  It accelerated from there. Soon, I was unable to grab a chord, roll out arpeggios on the piano, or bow my violin correctly. More radical and painful changes would follow. Later that year, I was diagnosed with a progressive myelopathy in the cerebral spine. Today, I am classified as a high functioning tetraplegic (quadriplegic). I have only partial and highly inaccurate use of my right hand. I am totally dependent on caregivers to assist in every facet of daily care. I use a large power chair to get to various medical appointments and the classes I teach at the community college.

Change comes to us all. No longer the huckleberry guitar-wielding vagabond I had dreamed so many years ago, my life continues. Nowadays, life is centered on a small ribbon-shaped area of necrotic tissue in my spine. I call it the “monster.” While I experience good days and bad, it never relents. It’s like being a little kid and having someone get a strong grip on the back of my neck. A militant non-smoker, I applaud any and all efforts that bring attention to the dangers of habitual tobacco use. My biggest regret about it is not that I tried it, but that, in the angst and confusion of a very troubled childhood, it attained such a strong grip on my spirit song. Each day, I try to make music and art. Some days, I can control my right hand well enough to issue an intelligible chord or scale. I’m told that the injury will progress in uneven stages. the implication being that it will eventually take my breath. My purpose in writing this isn’t to solicit sympathy but to urge you to be very careful about what you put in your body and to implore you to be mindful of your children. Do not let your story be eclipsed by something you might later find, could have been avoided. As for my story, I remain. In my waking life, I’m stuck in a power chair, unable to stand, but in my dreams, I fly.

Be well,

Happy

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