Chapter 11: Close to the End

With only one chemotherapy session left and three radiations to go, I figured I had rounded the corner and was racing towards the end of this torture.  Soon I’d be entering a period marked by some well-earned rest and rehabilitation. But as is often the case, I figured wrong. Turns out the corner I was rounding led me into a huge concrete wall that literally brought me to my knees.

So, here’s what happened.

Up until the Monday before New Year’s, I’d grown comfortable believing I had escaped the worse. While the many things I went through during the previous six weeks could hardly be described as “smooth sailing”, they didn’t match my dire predictions of how this chemoradiation was likely going to assault me.

I figured my stamina as well as my ability to fend for myself would finally run out of steam somewhere around the first or second week of December. This guess of mine was based on discussions I had with doctors, nurses, and fellow cancer patients as well as the many readings I absorbed to get a sense of what this nightmare was going to be like. So early on, I made preparations for basically being home-bound for four weeks as my treatments relentlessly bombarded the cancer and wreaked havoc on my immune system and healthy cells, all at the same time. And while I couldn’t have known what the physical effects would actually be like, I was painted a pretty clear picture by others of the suffering likely to come.

While no cancer treatment is particularly pleasant or undertaken without its complications, the combination of chemotherapy along with daily radiation for head and neck cancer is said to be one of the more brutal treatment regimens a person can undergo. I suspect one of the main reasons it’s considered so difficult is because of nutrition issues. Everything that involves food intake is directly in the line of friendly fire including the tongue, the throat, the teeth, the saliva glands, and the esophagus to name of few of the major hunger players. These critical pieces of the digestive anatomy necessarily get damaged (sometimes even destroyed) despite everyone’s best efforts to protect the “good” cells and tissues from the toxic chemicals and dangerous radiation traveling throughout the body and blood stream.

In essence, adequate nutrition quickly becomes a primary concern because without it, the body loses strength. And without strength, managing this torture is damn near impossible. The bottom line is very few people who begin treatment for throat cancer can go the entire seven weeks and maintain hydration and nutrition on their own without the help of an independent feeding source. I still remember one of my doctors telling me before this war was over, I’d be taking some serious narcotics to deal with the trauma to my digestive track. And in these days and times, if a doctor is promising you some “serious” narcotics, you know one of two things. He either wants to lose his license or you’re about to come into some deep shit.

So, in preparation for this eventuality, I did a number of things. First, my brother put off some winter trips and came to stay with me until the end of treatment. His presence was a huge blessing and I relied on him to get me around especially early on after I’d gone into intensive care for my Hemoglobin levels. But fortunately, after my release from intensive care, I was back to pre-hospitalization normal and able to drive myself to all my many daily appointments. I was also able to drive to the store, pharmacy, and to the office for a few hours here and there. I was even able to do thirty push-ups and walk my dog. The walks were shorter and the push-ups fewer than before all this mess but the fact I could still maintain some modicum of exercise was very rewarding and encouraging.

By the way, as I mentioned earlier my Hemoglobin went down to a 4 after my first infusion of Cisplatin which, I have since learned, is an extremely dangerous level putting me at risk for all sorts of bad shit including heart seizures and/or death. Unfortunately, it still keeps going down despite blood infusions and the fact treatment has ceased for more than two weeks as of the date I’m writing this paragraph. Chemoradiation is the gift that just keeps on giving.

I also took a few other steps to ready myself for the worst of the approaching storm. I made arrangements for my dog sitters to keep Apollo on very short notice. As with all my friends who’ve helped, they were supportive all the way. Next, it was time to get rid of my two older vehicles and get something more dependable for winter driving, especially since there is usually some god-awful snow storm assaulting us in late November or early December. To the rescue my good friend Alex, who I’ll never be able to repay for all he’s done for me over the years, found me a great late model SUV.

Next, I arranged my living room to become my downstairs bedroom and medicine area. My low-hemoglobin falls convinced me of the need to be free from stairways. I then met with my banker and got all my bills scheduled to be paid online. In short, I did a shitload of personal organizing which, if you know me, isn’t part of my character unless I’m preparing for trial. It’s sort of weird. If you looked at my work desk, you’d think I didn’t know where anything was. And while sometimes I don’t, most times I do. But anyways, thanks to my atypical level of preparation, I was as ready as I could possibly be to weather the storm I knew was coming.

But surprisingly enough, Thanksgiving came and there was still no sign of any added suffering other than the ordinary sore throat, raspy cough, and occasional gagging spell. My appetite for food had diminished to the point that I relied on my feeding tube for most of my nutrition. However, I had prepared for that eventuality by getting surgery to install the tube prior to commencing any treatment. The last thing I wanted was to face an invasive surgery procedure while in the midst of treatment and all the miscellaneous baggage that comes with it (like the totally unexpected hospitalization for low hemoglobin). And even early on when I didn’t need the tube for nourishment, I started using it as if it was my only source of nutrition. I did this so my body and digestive track had time to adjust to the new way of “eating”. It’s hard for the stomach to go from cheeseburgers and french-fries to seven cartons of protein shakes, all in a day.

Then came early December with my only real new complaint being pain on the exterior of my neck from radiation burns. Those effects were quickly mitigated by prescription skin cream. While an occasional sore throat reappeared, that issue was resolved through liquid codeine. In fact, all the way up to Christmas, I was managing this nightmare quite well.

But there were emerging hints of what could be in store. Unfortunately, the optimist in me didn’t pay them the attention they deserved. As I began to resort to my feeding tube as my sole source of nutrition, I experienced more and more bouts of moderate heartburn. It felt as if someone was continually stabbing me in the chest. Apparently, my body wasn’t liking protein shakes being my main source of food and was wishing for a return to the greasier delicacies that once permeated my kitchen. In somewhat of a related vein, I was also forced to rely more and more on the safety of adult diapers because my stool was simply too loose and irregular to go out into public without that added layer of safety. And I was noticing a significant increase in the amount of mucous I was expelling from my mouth and throat. At times I would choke and have to pull over if I was driving. 

Nonetheless, when Christmas came and I had only four treatments left, I cut my brother loose from being imprisoned with me and sent him on his way to Florida. I figured since I was basically feeling fine and the final stretch was only two days away, I wouldn’t need his help. He asked me if I was sure and I told him I was. And I really was. Besides, I have a zillion friends and neighbors who were always asking if they could help.

On the Monday after Christmas, I got out of bed to go to my final chemotherapy portion of my treatment. Days earlier, I’d assumed I’d be in high spirits when this day came knowing the end was only three days away. But when I awoke, my spirits didn’t do much soaring. Instead, I was feeling tired and beat. I got to the oncologist office where I spent four hours at my final chemo infusion then walked across the hall where I spent another two hour or so at the radiologists. Usually, I’m there less than a half hour but on this day, one of their four machines was on the fritz causing a backlog of patients awaiting their ten minutes of being nuked. Sort of gives you a clue about how many people are being treated for cancer across this country.

By the way, there’s a lot of people being treated annually for cancer. In 2020 it’s estimated that 1.8 million people were diagnosed with cancer of some sort. Most of them then began a treatment regimen of some sort including surgery, chemo, radiation, or a combination of all three.

When I got home Monday afternoon, I was uncharacteristically tired. I had my dog people keep my dog telling them I had a sense I might need for them to keep him the rest of the week. That turned out to be a good move on my part because the next morning I locked my car keys, along with my house keys, in my truck. It was a harbinger of things to come. Thank God for friends. I got a neighbor to drive me to my medical appointments and my tried-and-true friend Alex swung by and got my keys out of the car. Meanwhile, I started gagging during my saline infusion session and needed to go to the restroom to puke. While I was in there, I noticed I soiled my diaper and was forced to change.

Another problem with mucous surfaced later that same morning while I was receiving my third to last dose of radiation. To better explain it, I’m radiated by placing my body head-first into a tube with my upper torso firmly secured by a mask they made me which I described in an earlier chapter. It sort of resembles something they’d make for Hannibal Lector (text me if you'd like to see the mask). 

Then a wax-like sucker object is placed in my mouth for my tongue to attach to. At that point, I’m good to go and the session starts. Typically, it goes pretty fast with no complications although admittedly, it’s hard to swallow so I try not to think about managing my saliva otherwise I’m tempted to play this little game with myself to see if I can swallow a bunch without needing help. So usually, I switch my thoughts to what I need at the grocery store (which these days isn’t all that much since I’m not eating food).

But during this particular session I could feel a rapidly growing irritation in the back of my throat. I knew by the scratchy feel it was mucous quickly filling my throat. So, for the first time in thirty-some radiation treatments, I raised my hand letting radiologists know I was beginning to choke. They raced in, took of my mask, and I began to cough up all sorts of junk. Within five minutes, I had cleared my throat and went on to finish the treatment. But the event was extremely frightening as well as very discouraging.

After radiation, my neighbor picked me up and dropped me off at my house. Thank God for good friends. If you don’t have many, there’s always time to go out and make some. They truly come in handy.

Retrieving my keys from the not-so-secret place Alex had hidden them, I went inside ready to collapse. All I wanted to do was go to sleep. Unfortunately, I discovered I had soiled my bed from the night before. So, I did laundry and a general cleanup instead of a nap. By early evening, everything except my stomach had quieted down. My gut was being invaded by relentless attacks of heartburn that assaulted me every few minutes. I tried to chew some Tums but the mucous in my throat rendered them fairly inefficient. While I had some liquid reliever, it was too thick to go through my feeding tube. On top of that I got the hiccups causing me to gag and vomit. It was truly another night of pure hell.

The following two days brought pretty much the same symptoms. Diarrhea was fairly commonplace but manageable. However, heartburn and excess mucous were on the rise leading me to partially vomit as I continually gagged on my phlegm. When Thursday arrived, I attended my last radiation treatment and was given my mask as well as a certificate showing I completed radiation. The staff exchanged a few words about how much they valued treating me and, after thanking them for all they did, I got in my car and drove home. The celebration I once envisioned just didn’t happen, primarily because I was in no mood to rejoice.

I was hoping the end of treatment meant the side effects would subside but the New Year’s weekend brought with it a continual onslaught of even greater misery. Again, the worse was the mucous which caused me to gag about every waking hour on the hour. And while I was provided some medication as well as a number of different mouth care products, they were largely ineffective in controlling the problem primarily because the mucous had grown very thick and extremely dense.

I’m happy to report as of January 11^th, most all of my symptoms have noticeably subsided and I may be on the mend I was hoping for. I say this with fingers crossed because my hemoglobin number are still very low as well as my white blood count meaning I’m in no shape to fight infections. Even though I’m vaccinated and boosted, the Omicron spread concerns me because of my hemoglobin issues. And from what I’ve come to understand, it’s currently a plague in the emergency rooms. Also, the mucous still affects me and my ability to speak but the blogs of other throat cancer patients suggest that particular problem typically resolves itself four or five weeks after treatment. But again, everybody heals differently. However, I have noticed the problem is daily now instead of hourly. Good news for a boy who’s tired of gagging.,

The plan from here is I will go see a physician’s assistant every week and check labs. My primary concern is getting my Hemoglobin number up. Then sometime in mid-February, I’ll do another pet scan to see if the cancer is gone. At that time, we’ll address whatever issues remain.

Despite all the nonsense, my attitude has remained fairly good throughout the last couple of weeks. Granted, I wasn’t doing a lot of singing and dancing as I cleaned my soiled sheets or grabbed my stomach trying to lessen the pain from heartburn. Nonetheless, I didn’t let my despair hang around for too long either. And granted, there were moments where I was sorely tempted to just give into the misery and roll with depression. But I just shook my head, stayed in the moment, and reminded myself that all the misery is just part of the process.

My mood was also buoyed by recalling some of my fellow cancer patients navigating their treatment. In particular, I remember a middle-aged woman attending a chemo session wearing a scarf to insulate her head due to hair loss. She had to muster the physical strength to get up from her recliner and go to the bathroom because she had soiled herself. Making matters even worse, she was in the act of vomiting into a plastic bag as she was walking to the restroom.  When she returned, she looked at me, smiled, and said she tried to save these kinds of performances for dinner parties with her husband. We both laughed. Like I said earlier, it’s amazing how much strength you get to witness when going through this.

Even though these weeks have been especially difficult, I’ve maintained the tireless routine of personal hygiene and nutrition I’d established early on. My doctors and I discussed how I managed to go almost to the end without experiencing the full assault of symptoms. And the answer to why that happened seems pretty clear. I had enough foresight to religiously use my feeding tube to build up my strength. And trust me when I tell you, I was never known for preparing for the future. But cancer gives you no real choice. It doesn’t seem too forgiving of mistakes and poor planning.

I can’t emphasize enough how my feeding tube basically saved my life. During the later course of my treatment, there is no way I could have ingested 2400 calories of food and a half gallon of water on my own. And those are the numbers you need to absorb in order to maintain the strength needed to get through this war.

Had I been the previous version of me and not appreciated the essential need for nutrition, I could have seen myself getting lazy and blowing off on the feeding tube stuff. Had I done so, chances are the brutal cumulative effects of the poison and radiation would have crippled me weeks earlier than when they did. Also crippled could have been my will to go on fighting. I simply can’t imagine having to face a few more weeks of chemoradiation while experiencing the recent hell I endured. During my treatment, I’d already heard about two people undergoing a similar regimen as me giving up. After experiencing the last two weeks, I totally understand their decision. Simply, this shit isn’t easy and the drop-out rate for cancer treatment is a large enough problem that there are a number of studies being conducted exploring the issue.

So anyways, that’s been my month thus far. I’ll blog when I get more news. My next plan is to separate myself from the couch and become active once again. And the next big event will happen as I begin tasting once again. I’ll keep you posted.

The one thing I don’t want this blog to accomplish is discouraging people from taking part in their prescribed form of treatment should they be diagnosed with cancer. First and foremost, I would, without question, do this whole thing over for the chance of ridding this disease from my body. Yes, it’s been a real bitch and I can honestly say I’m not afraid of anything anymore with the possible exception of my boss. But in the total scheme of things, I was only wiped out for a month or so which is a pretty small price to pay for the possible reward.

Secondly, if you’re not doing chemoradiation for throat cancer, chances are you’re going to miss much of the suffering I’ve described. Obviously, you’ll have your own stories but I’m continually amazed at how many of my friends made it through their treatment relatively unscathed. Like I say, we all heal from and respond to trauma differently. I’m glad God gave me this particular path to walk through this problem. There certainly were other options that now appear much darker and way more formidable.

I’ll blog when I learn anything important. In the meantime, cherish your health and your loved ones because they are basically the crux of what this whole life is about.