Chapter 12: A New Leaf...Life After Treatment

Wow.

It’s been a long strange trip up to now. I apologize to those of you who’ve messaged me asking how I’m doing. I suspect when you follow someone writing about their cancer journey and you don’t hear from them, you think the worst. So, I’m sorry for the delay in posting but I’ll try to explain.

It is now approaching two months since I completed my last chemoradiation treatment for throat cancer. It’s been such a turbulent period of time, both emotionally and physically, that I’ve not been in the mood to write. That’s probably because I’ve been mired in a very dark and unsettled state of mind and it’s been hard for me to make any sense out of what I’d been feeling. And given the fact my feelings were changing daily, if not minute by minute, nothing I could have posted would have truly captured the emotions surrounding this post-treatment period. Suffice it to say, the new year started off sucking.

However, I’m now in a much better place. In fact, as I’m writing this, I feel absolutely wonderful. I’ve finally begun to rejoin the living. But it was an extremely rough road getting here. What follows is a summary of all that’s been happening.

Let me begin by saying we don’t know if my cancer is gone. In fact, we won’t have that answer for a few weeks until after I undergo a PET scan at the end of March. It will show whether radioactive dye injected into my veins reacts to the cells in my upper body and head area. If not, I’m free of the beast, at least for a while. However, if my cells “light up” meaning cancer is detected, then we’ll be forced to forge yet another dark and formidable passage.

Surprisingly however, I don’t have a lot of anxiety awaiting this test and the subsequent results. Years ago, I’m sure this period of uncertainty would have launched my thoughts into overdrive, frying my brain and wearing me out. But now I view this future event as just another hurdle, albeit a huge one, in a very long and intense journey of difficult hurdles. We’ll get to it…in its time. Meanwhile, I’m focusing on reclaiming my will to begin experiencing life again. As I’ll discuss, this cancer shit has a tendency to erode a person’s spirit, regardless of how strong you might think you are.

The week of February 14, I met with my radiologist for a follow-up appointment to discuss my current condition. His comments basically mirror my own observations. Thus far, I’m doing pretty well.

My speech has markedly improved and my tongue now demonstrates a much greater range of motion than before. This means the tumor at the base of my mouth has definitely shrunk in response to treatment thereby loosening the strangle hold it had on my tongue and surrounding nerves. Further, my tongue has begun tingling all over which, to him, signals that the nerves are likely regenerating. All good news. Finally, I informed him that my gagging has decreased in frequency to once or twice a day as opposed to its hourly occurrence immediately following the end of treatment. This means my throat is healing from the radiation burns and requires lesser amounts of mucous to protect the sensitive skin surrounding the inside of my neck. More good news. It also means I can quit buying bulk quantities of paper towels I used to capture my mouthfuls of spit and mucous gunk.

There have been a few other noteworthy improvements over the last couple of weeks. For one, my energy is slowly coming back. Right now, if I were to venture a guess, I’d say I’m probably operating at 70 percent of my former self, and each day brings with it a little bit more energy but with the caveat that, at times, I still feel drained. In fact, some days feel like one step forward and six back. But that’s the nature of this beast. Treatment beat the hell out of my body and the repair work is going to take time and, more importantly, patience. And if this miserable experience has taught me anything, it is how to be patient.

Perhaps the most exciting improvement from my perspective is that I’m beginning to regain my sense of taste. Like my other advances, this one is also characterized by gradual improvement. For example, I can taste an orange slice for about two bites and then the rest of the orange returns to basically a tasteless texture of stringy pulp. But that’s alright. I’m thrilled to death to be able to muster up a couple seconds of taste. Some tastes, like salt and particularly pepper, fully register. In fact, small amounts of pepper overwhelm my taste buds and cause me to spit out whatever I begin eating. Other tastes, like sweets, are very, very, faint and almost unnoticeable which is unfortunate because my freezer is full of the neighbors Christmas cookies that I’ve been waiting to scarf down.

The fact is the full return of my sense of taste will likely take months and it may never return to the level I enjoyed prior to this little excursion. We’ll just have to wait and see. Nonetheless, I’m fairly optimistic since my capacity to taste has started to return sooner than what I or the health professionals expected. And if I happen to lose my sweet tooth, then that will probably be a blessing. It’ll make it easier for me to keep fitting in my new size 31 pants. Yep, through all this nonsense I lost about 30 pounds going from 195lbs to 168 at last weigh in.

With the return of taste, I’ve also reacquired an appetite. And with its return, I’m losing my aversion to solid foods that I acquired this past November. Back then, I had finally lost all interest in food and in eating. But now, food not only looks good, it smells good too. So, I started cooking again. And while I’m still experiencing difficulty swallowing and despite not being able to taste most of the food I make, cooking is a way of forcing myself to begin the solid food process. It also allows me a way to check out how my sense of taste is progressing. Besides, my son was here for a month so I cooked some of his favorites and was pleased to learn that, according to him, I still have it in me.

So, that pretty much sums up the good news of recent. However, it follows perhaps the darkest period of my life to date. But like some unknown sage once said, the darkest part of the day is right before dawn.

New Year’s through much of January remains mostly a blur. With treatment over, I found myself lost in the sense I had a lot of spare time on my hands to spend alone with myself and my ailing body. And sometimes being alone with myself is not a very good idea, especially when things are dark. The month of January was one such a time.

During treatment I had created a routine, one that I became surprisingly comfortable following. My time was fully occupied with things to do and people to see. I’d start the typical day around 6 a.m. by feeding myself. That process usually took about a half an hour. Then at 8 in the morning for the better part of seven weeks, I was in the chemo room once a week getting infused with the chemical Cisplatin. Then four days a week for two hours a day, I was in the same room getting my veins flushed with saline solution. Then on every week day morning for thirty-five days, I’d hobble over to the radiation department located two hallways away from my chemo lounge and get nuked for fifteen minutes. Afterwards I’d drive home.

And when I got home, I’d adhere to yet another routine, one that consisted of watching television, reading books, tube feeding myself at noon, six, and again at seven-thirty, and then bed. And of course, there were the frequent naps in between that could better be described as unplanned moments I’d pass out from exhaustion on the couch. All things said and done; my life had become almost as boring and predictable as it had been before cancer notwithstanding the ever-increasing agony inflicted by being zapped every day by a huge x-ray machine.

In a bizarre sort of way, all this activity brought me some comfort as well as a degree of stability. I had people around me and a time schedule I was basically forced to adhere to. In essence, the treatment regimen gave my life structure and, as an added bonus, kept my mind mostly focused on the present.

But after treatment ended at the very end of December, I wound up pretty much alone at my house. My brother had left for Florida and my son wasn’t due to arrive from China until the late middle part of January. My oncology visits were limited to a couple early morning appointments each week for lab work which lasted around a half an hour. With the exception of three emergency infusions of blood and two unplanned infusions of an iron supplement, my contact with the outside world was extremely limited. Additionally, the weather (as well as the COVID variant) coupled with my compromised immune system left me with not too many places to go. Besides, I felt far too miserable to go anywhere anyway.

I soon felt my spirit declining. I’m sure part of the decline was due to my deteriorating physical condition and the fact they couldn’t get my bone marrow to produce red and white blood cells. On at least two occasions, my hemoglobin levels fell to alert levels requiring me to spend a few hours on three different days getting blood. About the second week of January, I felt my absolute worse.

Physically, my entire upper-body was reeling from the full effects of radiation. The outside of my neck looked like I’d spent a week in a tanning bed and I can only imagine what the inside looked like. The liquid codeine numbed that pain but nothing helped me manage the tremendous quantity of mucous I was expelling from my mouth. The amounts of mucous alone provided a pretty good clue as to the extent of the radiation injury to the lining of my throat. And I’m not exaggerating when I say it wasn’t unusual for me to fill a paper towel every hour with copious amounts of thick stringy phlegm I’d often have to pull out of my mouth with my hands.

By this time, fatigue had fully set in. I had very little energy and my anemic levels of hemoglobin plus the leftover effects from chemotherapy undoubtedly contributed to my lethargic appearance and attitude. I later learned people who had seen me around that time remarked to others that they worried about my color. Even though I don’t remember noticing my color, I was worried myself.

Aside from all the physical ailments that were plaguing me, I found myself witnessing a mental decline I had never experienced before. Like most people, I’ve encountered my share of traumatic personal events over the course of my lifetime ranging from the deaths of parents and close friends to divorce and the unexpected loss of intimate relationships. As the saying goes, shit happens as life brings with it all sorts of twists and turns. And in the past, I was able to process my grief by implicitly recognizing loss has its own time. Afterwards, I’d eventually return to an emotional state of equilibrium.

But this depression was vastly different from any of the lows I’d experienced before. I suspect what made it so remarkable is that subconsciously, I was likely processing the inevitability of my own death, an end-of-life event that seemed precariously close throughout the previous months beginning when I first heard the C word. I literally had never felt so hopeless in my life.

My mind went off the rails, as minds often do when you’re at your most venerable. I began spending time torturing myself by revisiting every one of my personal demons which were more than happy to help me replay some of my larger regrets. The realization also struck that I was running out of time in life to find whatever it is I’ve always been hoping to find. It was an exceptionally gloomy period of time inside my head matching the cold January grey that permeated the outdoors. Things had gotten so bad that at one point, I actually wanted to die. I really had no interest left in living anymore. Everything seemed to be going wrong with my life as this monstrous disease continually battered both my body and my psyche using my many regrets as its weapon of choice. I was simply an emotional wreck with little will left to live.

I think I remained teetering on this abyss for three or four days. Somehow it finally registered to me that I might want to explore the topic of emotions surrounding my particular form of cancer treatment on the internet. After all, it was the internet which helped inform me about some of the many physical challenges I had faced earlier as treatment began.

Specifically, I wanted to know if I was the only cancer patient “defective” enough to beat himself up and wanting life to end. So, I gathered up the energy to sit with my computer and google search the effects of emotions surrounding chemotherapy and the end of treatment. And low and behold, one of the first things I read was that the second week of post-treatment commonly brought with it a period of intense personal struggles for many patients. It was also reasoned that along with the cumulative effects of treatment, one of the contributing factors was the sudden change in activity levels. As a cancer patient you suddenly go from a full schedule of events to being alone with sporadic medical visits here and there.

The beauty of this internet search was that I was able to prove to myself I wasn’t alone with my feelings, that I wasn’t totally crazy. Through articles and blogs, I learned what I had already intuited, cancer treatment comes with a very high emotional cost.

Fortunately, I was slowing crawling out of my hole when my son Ryan arrived from China around January 18^th. He spent the following four weeks staying with me while working remotely at night for his company in China. His presence was truly a Godsend.

Because of COVID restrictions here and in China, we hadn’t seen one another for almost two years. Typically, he comes home in the summer for a few weeks and, in the winter, he and I would meet at some warm, bucket list destination to hang out and wander. Over the last fifteen years, we’ve been to Panama, Cambodia, Thailand, Vietnam, Mexico, and some other remarkable locations.

And he taught me a new way of traveling. Instead of preplanning our trips, we’d book a hotel near our arrival destination and stay a couple of nights. We’d then use the first days meeting people and learning about places that piqued our interest. And then we’d go. For example, after seeing the canal in Panama we were told of a charming little island on the other side of the country, so we booked a flight and went there. It turned out to be one of the best parts of our trip.

However, the circumstances surrounding this most recent meeting were obviously far different from the ones we’d enjoyed in the past. He was here to visit a father who has (hopefully had) cancer. Nevertheless, this particular reunion was exceptionally rewarding but on an entirely different level. That’s because we spoke about death and I’m convinced there’s no more intimate of a conversation you can have with a loved one than the end of life.

I suspect for both of us, we had previously spent our lives together never considering the stark truth that one day death would separate us. I certainly never gave my mortality much thought before now. Hell, until recently, I still felt, thought, and acted like I’m a man in my thirties. Some might go as far as to say my teens. And they would probably not be far off the mark. But recent events obviously made the truth about my finite existence more glaring and inescapable. So, we chatted in depth about some very deep topics. And when Ryan departed back to China, we left one another even more connected than I ever imagined possible.

However, his one month stay with me was more than just an occasion to ponder dark topics. We wound up spending a wonderful month together doing meaningless stuff like binge-watching television, playing games, and above all, laughing. We always laugh. I am truly blessed by having the relationship I share with my son. It’s a relationship that’s greatly helped me wade through these difficult times.

I had originally hoped to take a road trip with him to the Alabama Coast during the first week of February since that was the Chinese New Year and he’d be free from working evenings on the computer. And I was seriously longing for an after-treatment vacation to someplace on an ocean and moderately warm. But traveling away from home was never a real possibility given my condition and low hemoglobin levels. Additionally, the beauty of a road trip down South is the great food you find. However, my sense of taste was totally lacking when he first arrived so great food, for me, was not in the cards. And besides, I don’t think the temperature that week in Alabama ever rose about 50 degrees.

So, we filled a large portion of our time together binge-watching television. We went through three seasons of Yellowstone noting that while the story-line was entertaining, it was pretty loosely put together. For example, John Dutton’s son Jamie strangled a reporter who was writing a front-page story detailing his father’s corrupt ways. He then placed her body in a kayak, flipped it upside down, and watched it flow downstream to where it was later found. Her death was passed off by the local officials as an accidental drowning. However, the show neglected to deal with the fact that a routine examination of her body would show ligature marks around her neck as well as no water in her lungs. But hey, the scenery was great, there was a lot of gratuitous violence, and it’s hard not to like Kevin Costner.

Then we watched a German show on Netflix called Dark. We spent twenty-one hours of our life trying to figure out which character was who as it flipped between 1890, 1920, 1983, 2018, and 2050 showing the same characters time traveling between different dimensions. Through all the confusion, some of the characters came back in time to be their own grandmother. Not only was the show about time, it was a waste of time.

But the gem of the month was Ozark.  Unfortunately, it ended with seven episodes remaining and Ruth on the warpath.

But Ryan is now gone and my life is slowly returning to a new normal. Unfortunately, my brother who helped me so much throughout my treatment, suffered a stroke when he returned to California from a month long stay in Florida. Thankfully, he’s doing well and I’ll be seeing him in June when he returns to our lake house in Michigan.

I have a few closing thoughts about my experience I’d like to share.

I’m doing very well now and I truly appreciate all the many thoughts and prayers I’ve been offered. Some of you have remarked on my “courage” and “strength” for going through this and while I’m flattered, the truth is those adjectives are misplaced. The fact is, I didn’t have a choice. I, like the vast majority of cancer patients going through this misery, do what they have to in order to preserve life. My hidden truth is I’ve been scared the entire time and there were many times I masked my fears by acting calm and collected. What you didn’t see was the child in me screaming and crying every time I encountered pain and disappointment.

I truly hope no one reads this blog and decides to forgo treatment due to the fact I made it sound so unattractive. As I stated earlier in my writings, the treatment for head and neck cancer is especially grueling primarily because of nutrition issues and the parts of the body that are being targeted. Nevertheless, I would always opt for this path and a chance for life. And besides, other patients have undergone similar treatment regimens and have suffered few, if any, effects.

Similarly, other types of cancer in different parts of the body may have regimens that are not nearly as aggressive. Again, every person experiences the physical effects of treatment for their particular cancer a little differently. I’m likely one of those whose tolerance was lower than most. But the fact I’m starting to feel great again at times should be a testament to the efficacy of chemotherapy and radiation.

In a related vein, I have become so focused on cancer that I’ve basically ignored mentioning the suffering of those who have contracted other illnesses such as heart troubles or neurological disorders. They too have become warriors in their own right as they fight their conditions and are deserving of our recognition and prayers. And much of what I talk about regarding mental health issues surrounding cancer treatment applies equally to them as well.

Having cancer (or any other life-threatening ailment) means you are obviously experiencing one of Life’s most challenging events. In fact, it’s such a momentous yet common event, that one would think it came with some type of handbook explaining the various emotional stages a person goes through to get to the end, whatever the end may be. Yet surprisingly, I received little, if any, written information of what feelings were to come.

Sure. I knew what type of cancer I had and I was informed about my treatment plan. I was likewise informed of some of the hurdles I would face along the way as well as possible adverse reactions to various drugs. But in terms of being what I would call “well informed," that job was left up to me talking with other patients and exploring the internet. In fact, at times I got the feeling that I was just another patient on a cancer patient conveyor belt. I think part of that feeling is derived from the fact that the health care professionals are overwhelmed with patients and have understandably grown numb to the suffering that surrounds them.

Sometimes a doctor would see me but most times I met with a nurse or a physician’s assistant. Admittedly, they were extremely helpful answering my questions of the day. And while I’m not trying to be critical and although I understand the difficulty facing the medical community with treating the growing number of patients coming through their doors, I think there could be a little more emphasis on education as well as face to face contact.

The education of which I speak is the dissemination of a written publication to give to all patients when they are first diagnosed. The emphasis of the book would be to inform the patient of the various stages and emotions likely facing them throughout their cancer journey. In essence, it would be a guide outlining the basic treatment plans and goals but more pointedly, detailing the various emotions a patient can expect to experience at various junctures from diagnosis to post-treatment. And given the huge number of patients oncology centers see daily, there is a wealth of experience to draw upon both to explore and record those common feelings and emotions. It could go a long way in lessening the horrible isolation one feels at times while traveling this journey.

I also believe that the infusion room would be a great place for a cancer information specialist to visit on a regular basis to answer questions or to offer support in general. When you are receiving chemo or infusion it’s usually for an extended period of time while you’re confined to a lounge chair. There’s no better time to take a few minutes and engage the patient. And if somebody doesn’t want to talk, just move on. There’s usually a dozen or more people being treated at the same time so somebody would probably want a question addressed. I suspect those moments could likely turn into a type of support group meeting.

So anyways, thanks for reading about this little piece of my life. I’ll update this blog once I have my PET scan. And as always, if anybody needs anything, please don’t hesitate to message me.

Btw…thank you for all your help Richard.