Chapter 6: IT'S ABOUT TO GET REAL

 

The decision has been made. My cancer will be treated by chemoradiation alone. So, if any of you have been hanging around just to see if I croak during surgery, I’m sorry to ruin the suspense. On the other hand, if you want to witness how much torture I get to endure over the next two or more months, hang in there. I have this nagging hunch you won’t be too disappointed.

This has been a very difficult chapter for me to organize. My thoughts have been all over the place. That combined with a very busy work schedule along with the standard life obligations outside the realm of cancer has kept me from posting as regularly as I’d like. So, this particular chapter is a compilation of thoughts and feelings I had pre-surgery decision making and post.

So here we go.

Monday night was wet and dreary. It reminded me of some Lon Chaney movie where the ghoul suddenly appears out of the London mist. I sat on my couch listening to the gutters dripping left over rain from last weekend’s deluge as I tried to figure out how I was feeling. Nothing very noticeable was going off inside my mind. Instead, I’d say I was numb, perhaps neutral, maybe even passive. It was as if my brain decided to take a break all on its own. I tested it by conjuring up stark thoughts and images trying my best to evoke some strong response. But it didn’t react at all. It then dawned on me that maybe I was at peace.

Using this unplanned serenity, I started focusing on the decision I’d soon be making. For those of you who don’t know me, I’m divorced and have been for thirty years or so. There have been a couple of hit and miss relationships here and there but I don’t have a significant other unless you count my dog. I do. And although I have a ton of close friends and a lot of meaningful acquaintances, both personally and professionally, I’ve become, for lack of a better description, a social hermit. That’s been by choice. However, you’d never have guessed I’d ever reach that status if you spent any time around me from ages 16-55.

But people change. It happens when you get older. And I’ve started coveting this quieter life, one consisting of great books and mindless binge-worthy television. I guess you’d call me an extroverted introvert with a pretty strong emphasis on introvert.

Recognizing how hard it is for me to process this decision basically on my own, I began wondering about married couples and families. Do people going through this stuff, armed with soul mates and close-knit family members, make better decisions? Is the process easier? Do they tend to make the “right” calls more often? My guess is yes to all these questions. But my act of wondering about others is not too far from the concept of comparing myself to others. And as some proverbial wise man once said, you have no idea what someone else’s journey is all about so stay focused on your own. That truth being said, I suspect cancer has the power to significantly disrupt even the healthiest of family units.

Monday came and went with no news from Indianapolis. Tuesday was silent as well. But Wednesday morning I received a phone call from my Indy surgeon that totally rocked my world.

It turns out I don’t need surgery.

Apparently, my latest MRI showed the tumor exhibited little or no growth from the first MRI I had back in early September. But it did reveal that the tumor began at the base of my tongue and grew from there meaning it’s a tumor which is more responsive to chemoradiation than were its origin point in the tongue itself. Why? I didn’t even bother to ask. Understanding the scientific/biological answer is beyond my pay grade. My surgeon went on to explain since it is HPV based, he and the team who reviewed my case, felt the best course of treatment is through radiation and chemicals. According to him, my prognosis for recovery is very good. End of story, not quite.

My surgeon made a point to tell me that radiation of the neck area and base of the tongue is one of the more grueling treatments to endure. I was already mindful of that eventuality as he continued discussing the myriad of possible problems. The bottom line is this war is far from over but at least I’m approaching the end of the beginning. And with this disease, that’s a real start.

Despite the approaching terrain, the relief I felt after hearing his words is indescribable. It was unquestionably the best news I could ever have hoped to receive given the circumstances. I won’t have to undergo the anxiety of major surgery or the ensuing pain of a protracted recovery. Pieces of my leg will remain where they are and not become part of my mouth. I’ll keep my tongue intact and, perhaps, get to use it again much like before. There won’t be winter travel headaches to medical appointments hours and inches of snow away. I’ll be able to continue working, perhaps through the entirety of treatment if all goes well. This news brings tons of those little blessings I wrote about earlier along with some fairly big ones.

But undoubtedly the biggest plus is that I don’t have to agonize over making a decision, it’s been made by my surgeon and seconded by my radiologist. All in all, a very good day for this boy.

By the way if you were wondering, I had decided earlier in the weekend if surgery was my doctor’s recommendation, and if he could make assurances I’d keep part of my tongue, I would undergo the operation. It was a decision I still found myself wrestling with when he called but it’s one I was committed to follow regardless of the inner struggle.

Perhaps this is a good opportunity to describe the relationship, albeit short, I’ve established with my caregivers. I can tell through our many recent conversations that they truly care about their patients. It’s a feeling which has grown stronger with each contact. Moreover, I recently viewed a PBS segment on the mindset of those working in the cancer field. The doctors and nurses featured approached each case as a battle they must win. In fact, sometimes they become so focused on the war, they lose their objectivity when it comes time to declare surrender. But being a trial lawyer, I can appreciate this blinding tenacity. God only knows the self-torture they must endure when they lose a patient. And those are the primary reasons behind my decision to follow my surgeon’s advice, whatever it was going to be.

Wednesday’s news was truly a Godsend. But it didn’t take me long to visit another side of the equation and it came via some thoughts about the recent past. I mention it not to create the appearance that I’m this noble empathetic soul who always puts others first. The fact is I quite frequently miss the mark on that particular virtue. Rather, I mention it here because it seems to be a fairly common thought stream experienced by other cancer victims/survivors who are fortunate enough to hear good news. I’ll do my best to capture the moment and how it came to me.

After celebrating by reaching out to my close friends and relatives, my mind began drifting back to when I last went to Indy for my pre-op and MRI. While I was navigating the maze of downtown construction and passing by all the huge hospital campuses surrounded by adjacent office buildings and packed parking lots, I passed by Riley Children’s Hospital. If you live in Indiana, it’s one of those venerated institutions focusing on the health of children. Everyone has heard of it and its very name is synonymous with love. However, it’s a place you pray you never have to visit.

Like some kind of haunting, my thoughts directed me to reflect back on seeing that particular hospital. It reminded me that it’s a destination where sick kids go to get treated for cancer (among other vile diseases and conditions). The patients are children, all about the same age as the frightened little boy who’s been living inside of me for the last couple of months. And with that thought train came an overwhelming sense of guilt. The serenity I had been feeling earlier in the week was very quickly swept away.

The boys and girls at Riley truly are innocent victims. Unlike myself, none of them recklessly or intentionally engaged in behaviors which put them at risk for disease. They weren’t afforded the opportunity to grow into adulthood free from the terror of life-threatening illness. In essence, there’s no apparent reason why God gave me the good news while many of them and their parents are in the midst of experiencing the worst news and nightmares a family could ever possibly confront. There’s a part of my heart that wishes I could trade places.

Again, this is a thought I wouldn’t have shared except I found it curious that, during my many recent phone conversations with survivors, I hear the same type thoughts expressed over and over again. It goes to show that cancer is obviously a transformative event but perhaps, in some greater sense of good, it leads its more fortunate victims into a higher level of awareness. And once we start the climb, we become aware of our obligation to make this world a better place. Maybe writing about this shit is my little contribution to the good.   

So anyways, my news is great but there are some major roadblocks ahead. My radiologist phoned me Thursday to talk a bit about the next few steps. Friday I’ll undergo another imaging test for the purpose of fitting me with a face mask. I’ll need it to protect the unaffected parts of my throat and mouth from radiation exposure as the beam of light streams its rays into the tumor. The typical cycle consists of 35 actual days of exposure, with each sessions lasting about twenty minutes. They give you the weekends off to rest. The beam of light itself is painless; it’s the aftereffects that provide the misery. He confirmed that everything will start getting real somewhere around the third or fourth week of the seven-week treatment cycle.

I feel like I have somewhat of an understanding of what lay ahead because almost every throat cancer survivor I’ve spoken with or read about relates they were ready to give up and call it a day after the fourth and fifth week. One person I spoke with told me he was ready to quit with only three days left. His doctor had to remind him that the prognosis for recovery after completing all 35 sessions was extremely encouraging. But the doctor then added the statistics for recovery after completing 32 sessions were not available. The point was made, he completed the final sessions, and has been cancer free for two years. So, I’m adding yet another dial to my imaging board to help me manage that eventuality.

I’ll also be meeting with my radiologist’s onboard oncologist to discuss my chemo cocktail. I already know some of the things I’ll be told including the part where I could be prone to vomiting as the poison infiltrates my blood stream. But at least college gave me some pretty good practice at projectile puking so I should be able to manage that one just fine. And again, I’ll have the luxury of being at home.

Monday, I’ll undergo a procedure to install a feeding tube in my stomach. I’ll be put under which is a plus. And while I once feared surgical procedures, I’ve grown accustomed to them. In fact, I can pretty much tolerate some of the accompanying pain and discomfort. That’s because I had six implants done on one single occasion. No fun. Then there were the miserable after effects of my deep throat biopsy. Seriously sucked. But then there was the unexpected king of pain, my cystourethroscopy. It is another word for bladder scope.

Last January I had a bladder infection. My family doctor apparently found blood in my urine so he sent me to a specialist. I then met with a proctologist, underwent a basic exam with the rubber gloves and finger stuff, and rescheduled another exam two weeks later. I knew I was going to be given some type of scope in the near future but I figured I’d be prescribed some pain medication or perhaps, undergo anesthesia prior to commencement. Surely, they don’t stick a camera attached to a fairly thick cord up a gentleman’s urethra beginning at the tip of the penis all the way up to and through the bladder wall without serious pain killers? The answer is “yes they do”. And they did.

They placed a dab of some kind of numbing gel on the end of my penis and that was all the relief I got for the next fifteen minutes. I was told it would hurt a little at first, but truth is, it hurt a lot at first and for the following two days whenever I went to the bathroom. Turns out everything was normal but it’s a medical moment I shan’t forget for a very long time. Bottom line is food tube surgery isn’t going to be a problem because I’ll be fast asleep.

……

It’s Halloween and I haven’t posted yet so I thought I’d include Friday’s trip to the radiologist. Unmarried was working the reception desk dressed as a stagecoach bandit complete with a brown bandana face mask. I was ushered in and met with one of the doctors to go over a waiver I needed to sign listing all the side effects of my upcoming treatment. It was explained in detail what the upcoming sessions would be like. Swallowing, dry-mouth, and tissue burns were all highlighted as possible eventualities. The doctor was Chinese so we talked a bit about how much I enjoyed visiting his country. After chatting a bit and telling him my son has lived there for the last nine years, I was taken to the radiation room.

A wonderful young woman named Lon explained the process beginning with the day’s event of fitting me for a mask. I was place on a very narrow table at the entrance of a tube machine and wrapped with a warm wax-like material which she molded over my shoulders and face. Next, I was given a wax insert for my mouth and told to place it over my tongue and at the base of my mouth where my tongue meets the back of my throat. It reminded me of a Slowpoke sucker but had the bland taste of warm wax. I bit down on it to leave impressions and, all waxed up with sucker in mouth, I was strapped down and inserted into the tube. There I spent about twenty uncomfortable minutes while she zeroed in on where I’d be zapped.

Afterwards, she told me about the upcoming daily process and we chatted a bit about the fact her ancestry was from Vietnam. I told her I’d been there twice and loved the people and especially the food. She and I spent a few minutes talking about the food and she relayed she and her teenage daughters had been to Saigon two years earlier. I thought there was no way she could have two teenage daughters because she almost looked like a teenager herself.

We exchanged goodbyes and I left, but not without saying goodbye to Unmarried. As I suspected, she definitely remembered our first introduction. In fact, she started laughing again remarking that she laughed throughout the weekend as she relayed the story to her boyfriend and others. It looks like I’ll be seeing her later this upcoming week or early the following week. We’ll then have 35 mornings to laugh again. I only hope I’m in the mood.

So anyways, Halloween is upon us and I wish you ghosts and goblins a great time. As for me, I’ll be sitting on the neighbor’s porch handing out candy. I’m sorely tempted to give the chalky, nasty tasting chocolate protein drinks I received for pre-op to the young adults who are obviously too old to be begging for sugar. But in the spirit of the holiday, I’ll give them some hard candy nobody wants instead.

Write to you after the feeding tube goes in.