“My Voice” by Ron Sparks

The scariest words you never want to hear are “Mr. Sparks, we don’t know what that mass is in your neck and it may be malignant.”  That sentence turned my life upside down and inside out.  Nothing thereafter would ever be the same.

It all started so innocuously in late August 2008.  My girlfriend, Carey, and I were getting ready to go enjoy fondue with friends.  In accordance with Man Rules that state we cannot get dressed by ourselves when a woman is present, I had my collar tucked into my shirt and Carey had to adjust it for me.  As she was fixing my collar she brushed my long hair out of the way and said “you have a lump on your neck.” (yeah, I had really long hair; I am a hippie surfer/poet/motorcycle rider, after all)

I wasn’t too outwardly concerned.  We went to dinner, had a great time with friends, and went home.  Sometimes, though, you just know when something is wrong.  I felt it, deep in my psyche; This Was Bad.  So the very next morning I went to my primary care physician, hoping to hear that I had nothing more severe than an infection of some kind.

My physician was alarmed at the size of the “mass” in my neck, as he called it, and sent me immediately to the hospital for a CT scan.  No one had as yet used the word “cancer” but I’m a smart guy – I knew where this was heading; the word “mass” wasn’t for Catholic people in this context.  The CT scan came back inconclusive, so I was sent to an Ear, Nose, and Throat specialist – all within the same day.

The last of my hope was shattered when an ultrasound of the mass revealed that it was solid; I had hoped that it was a cyst.  The doctor performed a Fine Needle Aspiration right then to take a micro-biopsy of the mass.

The results came back three days later.  Squamous cell carcinoma.

The ENT was positive – but I had done enough Internet research to know that the sampling size of a FNA biopsy is so small that false positives could occur.  I asked for options and I was told he could go in and take the mass out and test it – or he could perform a bigger, more invasive, biopsy.  He preferred going in and taking it out; it needed to come out anyway, but I balked and opted for the biopsy, against the judgment of my doctor.  He was reluctant to do the biopsy because, if it was cancer, the biopsy needle could “drag” cancer cells into my neck and away from the mass itself, assisting in spread of the disease.

I should point out here that I had no problem questioning my doctor.  I know they are fallible and can make mistakes – and I knew that my health was my responsibility and that I was the best advocate I had.  A few years ago, my mother went into the hospital for a single bypass heart surgery and came out months later with an “open belly;” all of her intestines on the outside of her body covered with a flimsy skin graft and with a huge intestinal fistula.  Someone made a huge mistake.  I spent months at the hospital, by her side, doing research, and making sure the doctors made well-informed decisions and appropriate choices for my mother.  I caught them numerous times about to make a mistake that could have deadly consequences.  I learned my lesson, folks; do your own homework.  Take control of your own treatment.  Mom still has her intestines covered by a skin graft; you can’t put Humpty Dumpty back together again.

So, against my doctor’s better judgment I proceeded with the full biopsy and his initial result was confirmed; squamous cell carcinoma, Stage III, with an occult primary.  In other words, I have a malignant type of skin cancer that started somewhere in my oral cavity and had spread into my lymph nodes.

Many people react differently upon getting confirmation of cancer.  Some cry.  Some faint.  Some do nothing.  Me – I felt a hot flash run up through my body and I suspect my blood pressure was dangerously high, but one silly thought kept running through my head.  “Squamous” rhymes with “Stamos.”  I have John Stamos Cell Carcinoma.

I was introduced immediately to a “cancer coordinator” through the Florida Hospital Cancer network.  Patients like me, in a state of shock, don’t know what to do.  I only spoke to her for a week as she kick-started my journey but she arranged appointments with all the doctors I would need to consult with, a medical oncologist, a radiation oncologist, and a surgeon.  As it turned out, my ENT was the surgeon of choice.  Without that week of assistance from the coordinator I would have been hopelessly lost and out of my element.

After telling my family, I went to work and dropped the news to my team and to my supervisors.  I was, at the time, a VP in my company and in charge of one of our high-profile software projects.  A co-worker of mine who was in the middle of treatments for Stage IV colon cancer stopped by my office and handed me a book, “It’s Not About The Bike: My Journey Back to Life” by Lance Armstrong.  He didn’t ask any of the inane questions everyone else was asking; he didn’t offer any worthless platitudes.  He just said he was here to talk if I needed it, handed me the book, and walked out.   (He is two scans into remission right now – a true survivor and a great human being)

I took that book and read it cover-to-cover in a day.  I went to the LiveSTRONG website and ordered the free booklet to help new cancer patients.  That book scared me; it was filled with frank stories from survivors about facing your mortality and understanding that nothing in life is certain.  The stories were always meant to instill hope, but they forced me to face the fact that I might die from this disease.  I didn’t want to face that reality.  I put the book away and haven’t opened it since, although I have faced my mortality many times since and have reached an uncomfortable peace with it.

The CEO of my company, who has a child with autism, called me into his office and gave me some of the best words of advice I had heard to date.  He told me be careful in whom I choose to confide in.  When I was first diagnosed my fear, anxiety, and angst were so high that I had to tell pretty much everyone about my condition. It was as if by talking about it I was forcing the reality of it into my life.

I would talk to strangers at the grocery store. Colleagues at the office. Friends. Family. Loved ones. As you can imagine, I got all kinds of different responses. Some responses made me feel uncomfortable.  My CEO told me to pick the right kind of people who really supported me and weren’t around to fill some need they had.  There are all types of people who associate with you when you have cancer.

You have the “rubbernecker” who drives through the scene of your accident only so they leave and say “Thank God that’s not me.”  You have the “denyer;” a person who doesn’t know how to acknowledge that you have a life-threatening disease and wants to pretend like it isn’t there at all. This person tries to be there for you but doesn’t know how because your cancer sits between the two of you like a big white elephant.  You have the “invisible man;” a friend who promises over and over again to be there but always has a personal tragedy that prevents them from seeing you.  There are others; this is just a sampling.

If you’re reading this and have cancer or are a friend or caregiver of someone who does, help them steer clear of these kinds of sycophants. Be a real supporter.

With that advice in hand, I let my girlfriend handle who could and could not see me as I went in for surgery, barely a month after she had fixed my collar on that fateful evening.  I had a radical neck dissection; a five hour procedure, that left a sexy 10-inch scar on my neck and deformed me slightly.  Had I listened to my ENT, that would not have been necessary, but he was forced to take the neck muscle along the line where the biopsy had been done, to ensure no cancer had spread from there.  The good news; only one lymph node had cancer, all the surrounding nodes were clean.

The surgery uncovered my primary site; my left tonsil.  I got a tonsillectomy at the same time.  The recovery from the tonsillectomy was much, much, worse than the recovery from the radical neck dissection.  Adults handle tonsillectomy very poorly.

My medical oncologist told me I had “smoker’s cancer;” the cancer normally associated with heavy smoking and drinking.  I neither smoke nor drink heavily and never have to any significant degree.  I have had the occasional cigar, as men are wont to do, and I did some recreational marijuana when I was younger, but that was a short-lived phenomenon. There’s no explaining why I got the cancer.  There is also a link between the HPV virus and oral cancer.

Six weeks after surgery I underwent chemotherapy and radiation therapy.  I was completely unprepared for the morbidity of it all.  I received a chemotherapy drug called Cisplatin; it’s a mustard gas derivative and is the same drug Lance was on as he battled testicular cancer.  It’s so toxic that you can only get it once every four weeks and the delivery takes 6 hours because it’s so harmful to the kidneys.

The radiation seemed at first to be a walk in the park.  I handled it so well.  Until one day I didn’t.  I lost the ability to swallow.  I lost my taste.  I couldn’t eat.  I was losing weight too fast.  A feeding tube was inserted into my belly and I was forced to pour my food directly into my stomach for three months.  I lost 50 pounds.  I went from being comfortably plump to dangerously skinny.

In the middle of chemotherapy, so weak I could barely walk, in the middle of short-term disability, I risked infection and took my girlfriend to one of our favorite date spots, Leu Gardens, and I proposed to her.  She accepted.  We’re scheduled to get married in October of this year.  We’d only been dating 8 months when I was diagnosed and she never, not once, left my side.  She would sleep curled in a ball on an uncomfortable chair when I was in the hospital.  She would hold me when I was chilled so badly that the shivering wouldn’t stop for hours.  She would comfort me when I was feeling desolate and alone.  She kept me sane.

One day, the treatment was over.  I was recovering.  I was going back to work.  I felt abandoned and scared – the routine of chemo and radiation was familiar and at least I was doing something to fight my cancer.  The psychological scars are worse than the physical ones; remember that when dealing with your loved one who is battling cancer.

My first post-treatment scans came back clean four months ago.  I have two months until my next set of scans.  I’m nervous.  Maybe I have beaten this cancer.  Maybe I haven’t.  I’ve taken everything it has thrown at me thus far and have come back healthier and stronger than I have been in a decade.  I’ll fight this as hard and for as long as it takes.

If you’re reading this, remember my name.  I am Ron Sparks, of Orlando Florida, and I am a survivor.  There is always hope.  You are not alone.

(You can read my full cancer journey under my “Cancer Blog” on my blogsite:  http://www.binarybiker.com)

This entry was posted on Friday, August 14th, 2009 at 7:53 pm and is filed under written word and tagged with Ron Sparks, Squamous Cell Carcinoma, Survivor.