Chapter 5: Are You Married?

My timetable for decision making suddenly changed this week due to a scheduling mix up. I’ve headed to Indy seven days earlier than planned for an MRI and a pre-op meeting. I never attended a “pre-op” meeting before but it's something they schedule close to surgery to rule out any surprises. It’s also a sign that surgery is close although I still don’t know any dates. Right now, I’m not much in the mood for any more surprise changes but I’ve come to recognize they are just part of this dreadsome process.

I’m currently stuck in this emotional comfortable/uncomfortable holding pattern. It’s what I would call the “emotional landscape in between,” meaning nothing is currently etched in stone activating my undivided attention. Therefore, in a very limited sense, my peace of mind is not being directly assaulted by an invasion date. That is the comfort, and it’s extremely small.

Still, this particular unknown called “my decision to elect major surgery” is on the nearby horizon causing a very real sense of discomfort. The fact is, my war is just too close to find any meaningful peace of mind, date or no date. So, I write and eat ice cream to fatten up.

I view this whole “I got cancer” stuff as a process basically consisting of three parts. The first is the known which consists of all the things we patients go through up to the point of deciding how best to proceed. It starts, of course, with shock. My “known” period was largely peaceful because I got to stay here for a while and process shit. But those who are stricken with particularly aggressive cancers don’t have the luxury of hanging around their familiar for very long. I was lucky in that limited sense.

Then comes the second part, the great unknown. It’s the treatment portion of this trip. Should I choose surgery, I’ll either wake up on the other side and directly enter part three, or I’ll pass go and collect my two-hundred dollars or whatever it is I’m intended to collect as my soul flies away into the afterlife. Should I choose radiation and chemo, I’ll stay awake through the entirety of part two and slowly, but surely, witness the daily effects of radical cancer treatment. But through either door I choose, part three will consist of me completing treatment and entering a whole new world.  

I want to say I feel blessed for having to go through all this. But that would be a lie. Actually, I feel tormented because I want to know ahead of time that any decision I make will be the right one. But what I’d like even more is for someone to tell me what to do and take all the second guessing out of the equation. For perhaps the first time in my life, I want to be led, not lead, which by the way is so unlike me.

But for better or worse, I’m stuck being the only general capable of deciding the course of my upcoming war. So, I’m left with no choice but to have faith in my capacity to read God’s directions. It’s a faith in myself I’ve admittedly not yet perfected, at least not to my satisfaction. But we’re working on it.

So, here’s how this week went.

By the way, I’m constantly in the process of editing this and every other chapter I post. I’m sort of a perfectionist when it comes to writing but you wouldn’t know that by looking at other facets of my life, like my desk at the office. But while I inevitably edit events on different days than when they happen, I do my best to record the actual feelings of that particular day or moment. For instance, right now I feel rested and at peace but you wouldn’t know that from reading the first few paragraphs. In fact, you’d probably conclude I’m suicidal. But I’m not. Those were yesterday’s emotions. And emotions change daily.

Actually, the story of this week really began with a telephone call I made Wednesday night while I was consumed with decision making thoughts. Something told me to put down the computer and make a call to one of my brother’s Vietnam buddies who was diagnosed with tongue cancer a couple of years back. He learned of my condition from my brother and volunteered to speak with me. By the way, if you find yourself telling yourself to do something related to a major problem in life, you might want to listen. I suspect that’s how God talks.

After brief introductions, he relayed the fact his condition was basically the same as mine. He had an HPV squamous cell tumor at the base of his tongue only his was very large. Much like me, he mistook the warning signs as being something minor so he waited a couple of years before seeing a specialist. He told me he had an uncomfortable, nagging sore throat but nothing overly painful that raised anyone’s concerns.

But he had throat cancer and was left with two choices. Surgery meant he’d lose his tongue along with his vocal cords and voice box. Chemo and radiation would similarly bring their own brand of hell but leave him with the ability to speak and eat, that is if the treatment worked. Unlike me, the aggressive nature of his tumor left him with little time to decide his course of action. He chose chemoradiation because he felt he really had no choice given the quality-of-life costs associated with surgery. With the advice of his radiologist in consort with the chemo doctor, he was given a special concoction of radiation and chemicals which has resulted in him being cancer free for the last two years.

This phone call was something I wanted to hear. In fact, it’s something I needed to hear. While he was careful not to advise, he did detail much of what I could expect should I opt for radiation.

Fast forward to Thursday morning. I had an eight-a.m. meeting with my radiologist here in Fort Wayne. When I arrived at his office, I assumed the receptionist seated at the front desk was Mary because whenever I called, she’d answer and we’d chat a bit. If I wasn’t able to answer, she’d leave a message telling me to call Mary. So, I approached her wanting to formally introduce myself and I started the conversation by asking her if she was Mary. She paused for a moment and told me no, she was divorced.

I immediately began laughing and shaking my head signaling that wasn’t what I’d asked. I then repeated the question and the reason why I asked. Obviously, my speech impediment caused her to misconstrue my question but my reaction told her there was no need to apologize and go ahead and laugh. So, after hearing me explain, she joined me laughing as it dawned on her she’d misunderstood. Swear to God, it was a scene right out of a Seinfeld episode were George to have had throat cancer.

I was sorely tempted to tell her that if I was thirty years younger and not dying of cancer, I’d ask her out for a drink. But recognizing that not everyone appreciates my sense of humor I passed on the opportunity which now, I sort of regret. Anyways, the chuckling receptionist who was not Mary or married, then escorted me to a patient room.

My radiologist walked in a few minutes later. When I last met him my pet-scan results had not yet returned nor had the pathology of my tumor been analyzed. I suspect like me, he assumed it was from smoking and that the pet scan would likely reveal that it had invaded the rest of my body. Therefore, his initial assessment of my case was not promising. In fact, it was so bleak I left that appointment in tears.

But as he entered the room this morning, his demeanor showed signs of optimism. I’m not sure how to describe it except to say it was as if he was encountering a patient where there was hope. By the way, you get pretty good at reading the non-verbal signs from your physician when you go through shit like this.

Knowing that I had appointments with my Indy health care providers later that morning, he got straight to the point. However, he was in no rush. Instead, it was me who needed to hurry and he was trying to accommodate me. I only had a couple hours to get to the downtown Hospital and I knew there was likely to be a bunch of construction delays. Otherwise, I’m certain he would have taken as much time as I needed to talk. By all accounts, he’s a great guy and a fantastic doctor and I’ll feel very secure in his care should I opt for chemoradiation as my main course of treatment.

Cutting to the chase, he told me that while the “preferred” method of treatment in my type cases is surgery followed by chemo and radiation if needed, he believes there’s a good shot that chemoradiation alone can eliminate my cancer. While there was a small sigh of relief inside me, he added a caveat which I was already made aware. Radiation at the floor of the mouth becomes pure hell about halfway through the treatment cycle. Saliva dries up and swallowing turns into a lost art--not to mention the soft tissue burns inside the mouth and throat. Nonetheless, it is now a viable and promising option.

I told him I’d be speaking to him soon and then left. As I was walking out of the office, the receptionist and I exchanged big smiles. I suspect she’ll remember me when I come back. Unfortunately, I had laughed so hard earlier that I forgot to ask her name. So from now on, she’ll always be known by me as unmarried.

The drive to Indy was fairly non-descript except for the fact I borrowed a friend’s car because mine was feeling ill. It suddenly feels like everything in my life is sick right now. Anyways, he had Fleetwood Mac “Rumors” in the CD player so the entire drive became a trip down memory lane.

Every song reminded me of failed love affairs. I have since learned that that’s what the album was about in the first place. Purportedly, the band members cheated on and with one another. But nevertheless, the ensuing tensions made for some great writing because their songs are pretty much timeless.

The song which evokes the most memories for me is Rhiannon, a woman who Stevie Nicks intended to be “not of this world”. I suspect if you were a full-blown alpha male growing up in the 70’s, you probably chased and lost your celestial Rhiannon. As for me, I lost a couple of them. And just as the song goes, losing them and their magic left this twenty-something college hippie heartbroken. Oh well, that’s college for you.

I was thinking about my first Rhiannon when I came upon stopped traffic near the 69/465 exchange in Indy. For the next thirty minutes I was battling construction traffic trying to get thru the maze of detours leading to my appointment downtown. I showed up 15 minutes late but, earlier in the week, I had told the scheduler that I might be running late. So, when I arrived everything was fine and I was immediately led into a small conference room where the pre-op soon began.

First, a nurse came in and checked all my vitals. That nurse left and a physicians assistant came in and asked me a slew of questions. When she completed her portion of the exam another nurse came in with a surgery goodie bag that had a bunch of stuff in it. Included was a special shampoo I needed to apply the morning of surgery along with a bunch of protein drinks I needed to drink starting five days before my go date.  She then set me off to another part of the massive complex for more testing.

I had never really been sick before with the exception of gallbladder surgery that was performed at a smaller regional hospital. As I walked through this imposing complex of offices and hallways it began to dawn on me just how many sick people must be hanging around this world. I bet that within a three-mile radius of my location there were five or six huge hospitals, all with adjacent office structures and parking lots that appeared nearly full. I also never appreciated how many doctors, nurses, laboratory assistants, and other staff members who exist to deal with us sick people. And then I started thinking about how the downtown Indy medical scene was only a small portion of what exists throughout this Nation. New York City, Dallas, Chicago, Miami, Los Angeles, to name just a few. Trying to conceptualize the vastness of the health care infra-structure in America is simply mind boggling.

The bottom line is I am only one of millions wandering the halls of hospital land on a daily basis. It makes me feel a lot less significant than what I want to feel.

After a couple elevator rides and a lot of walking, I wound up at the lab where they drew about seven different vials of blood. Next, I went to radiology for some x-rays which was another few long hallways away. There I met two very sweet technicians. Afterwards one of the techs explained to me my next stop would be the imaging center of yet another radiology department. She was going on break so she offered to accompany me because the route to get there was “somewhat complicated”. She turned out to be spot on in making that call.

After two different elevator rides and a walk over a pedestrian bridge crossing some major road construction, we eventually arrived at a whole different huge building filled with medical stuff. During our hike I learned she had two kids in college and had been a tech for over twenty years. She learned I had one son living in China and that I had throat cancer. I suspect my speech may have given that away without having to tell her. Anyways, we parted friends and she wished me a very sincere hope that I’d be okay. We even hugged and I teared up a little bit.

Within minutes of arriving at my latest location I was escorted into a dressing room area and given a pair of scrubs to change into. Then a very nice young man positioned me on a table leading into a very narrow long tunnel otherwise known as an MRI. He explained it would be a fairly long procedure, fifty-five minutes, since he was taking pictures of soft tissue areas. He then gave me some headphones, asked what type of music I wanted to hear, secured my head cautioning me not to move, and then found a vein to inject contrasting dye. Soon thereafter I was launched into the tube.

If you’ve never had an MRI before the first thing you need to know is it doesn’t hurt. But that being said, if you’re claustrophobic you might want to get some Valium. For the next hour or so (a period of time that actually seemed like eternity) I laid still listening to some cheap headphones playing scratchy rock songs from the seventies all the while still hearing the clanging going on around me. Clanging you ask? Yes clanging. An MRI sounds like two armies attacking each other by throwing pots and pans. And probably even good earphones wouldn’t have been able to muffle the sound.

The psychological torture was finally done around 3:00 PM. After spending the next twenty minutes trying to find my way back to the car, I eventually learned how to pay my parking ticket and then I was off. I turned on the radio and found a station that played alternative music. I recognized some tunes by Snow Patrol and Death Cab for Cutie and used the ride back to go down yet another memory lane. This period of time was a magical three years when my son lived with me and began painting. I suspect I’ll write about him more as this journey progresses since he plans to take some time off and come back home to help me recover.

Anyways, I arrived back in the Fort safe and sound but mentally and physically exhausted. After picking up my dog I joined the neighbors for a quick glass of wine and then retired for the night. Sleep was uncharacteristically restless filled with extremely strange dreams. I realize that’s an oxymoron but these dreams, while I can’t remember their contents, were the equivalent of sleep puking. Again, this whole process is so very perplexing that I suspect my subconscious mind is in overdrive trying to figure things out.

Physically, there is no pain however there’s some discomfort in my throat but nothing different than in the recent past. Swallowing remains a little difficult. I notice it mostly when I take pills, sometimes they get stuck in my throat. It’s a pain in the ass if they stay there too long because the coating wears off and I get to taste the actual medicine. I can tell you from experience, pure Ibuprofen is not something you want to put on your cereal.

And speaking of taste, I’m viewing this down time as an opportunity to eat as many foods as I can. Food has always been a central part of my life. Often, I’d plan vacations around destinations known for the best food. New Orleans, China, and Vietnam all come to mind. But now food has taken on an even greater meaning and importance.

First, I want to put on weight to help me endure the coming months, especially if I have surgery. I’ve gone from 195 pounds down to 171 pounds after my biopsy and then back up to 185 where I’m holding steady. Second, I want to use this time to eat everything I’ve always liked. Sort of my last meal in a sense because soon, my food intake will be reduced to liquids, soups, and cereals. Unfortunately, some of the things I’ve been eating look better than they taste due to the fact many of my taste buds were compromised by my biopsy. And more taste bud elimination is in my cards. In addition, my eyes are often bigger than my throat meaning foods like prime rib are difficult to swallow, at least in the chunks I was used to snarfing down.

But the important thing is that my spirits are generally quite high despite the uncertainty of this whole event. I attribute this, in part, to writing this blog even though I recognize it’s a single story about one person out of several billion going through the many gauntlets thrown to us by having life. In essence, it’s meaningful in a personal sense but, at the same time, meaningless in a collective sense when one considers the larger scope of things. My recent trip to hospital-mania convinced me of that particular truth.

I was originally going to use this post to detail some of the contacts I’ve made and maintained with other cancer patients and survivors. I’ll do that probably in the next chapter because I’ll be having more conversations with each of them once my MRI comes back. Each of their stories of bravery will be important factors in how I decide to proceed. As of now I want to live and I’d like to taste the food I eat. Those are pretty simple wishes I once took for granted.

Speaking of the blog, I want to thank those of you who have messaged me with your thoughts and prayers. They mean a lot. And I’m also glad that some of you find these writings entertaining because that’s one of the reasons I decided to make them public in the first place. You are all definitely a part of my journey and it’s anyone's guess how this whole thing turns out. So I hope you enjoy the ride and I hope I enjoy the conclusion.

Until next time, 

John.