Chapter 8: Just Like Paradise

 

I haven’t been writing much lately and there’s a reason. I got sick. Seriously sick. So, here’s the latest in the journey of a rookie throat cancer patient trying to make his way through a dark and putrid swamp called chemoradiation. And the going’s been a little tougher than what I’d been expecting.

By the way, I’m editing this chapter during the Thanksgiving Holiday weekend. My original intent was to write about the events surrounding my disease as close to real time as I possible so I could better relay my feelings of the moment. However, the last two weeks have kept me occupied with health concerns which resulted in a short stay at a local oncology intensive care ward and six pints of blood. Crazy as it may sound, I haven’t had a lot of extra time to gauge my feelings. In fact, I’m not even sure I had any emotional feelings. I’ve been more of a robot in survival mode.

But now I have time as well as feelings. As for the moment, I feel amazingly good with an energy level I haven’t experienced for months despite the fact radiation is starting to make the skin on the outside of my throat boil. I’m told, the inside will be next. My doctor and I both believe my elevated energy is likely due to the tumor shrinking. Similarly, I’m currently swallowing more effortlessly than I have for months. Again, this could be due to the nasty little time-bomb inside of me shrinking and losing its hold on my tongue and throat. Nevertheless, swallowing will likely be compromised once again in the very near future only this time by the cumulative effects of my treatment regimen. Like I’ve said before, you take your blessings wherever you can find them.

Spiritually and mentally, I’m as strong as I’ve ever been. Emotionally, I feel very balanced with the possible exception I find myself crying a lot. The triggers for my tears can be anything from the sound of fallen leaves rushing past me on a walk with my dog to meeting another cancer patient’s eyes as we pass one another on our way to treatment. Often the tears are brief but at other times, they consume me.

For instance, this past week I needed to spend some time in the office trying to get a few matters concluded before the full hurricane makes landfall either the first or second week of December. So, the day after I was released from intensive-care, I bounced into the office unannounced during an office carry-in. I was dressed like a homeless guy (which isn’t all that unusual for me) and my lips and face were all contorted from where I had fallen and bit through my lips. And when I was seen standing in the doorway, everyone began to clap. Many of them came up and started hugging me. It was absolutely one of the most powerful moments in my life. I just stood there and started crying like a baby. I literally couldn’t speak for quite sometime because I couldn’t catch my breath between my tears.

And as you’ve probably guessed, love is a very powerful ally to have in fighting this war of attrition.

Also by the way, while I’m truly moved beyond words by all of your comments and prayers, I’m not writing this to solicit sympathy. I suspect I’ll be fine although, perhaps, a little worse for the wear. Instead, prayers and sympathy would best be directed to a young single mother I befriended during chemo. She first learned she had pancreatic cancer while giving birth to her daughter last April. Her passionate fight to live through her personal hell, while weighing less than 90 pounds, can only be described as heroic. She is an epic warrior and I think of her daily. And those thoughts bring me tears.

So, here’s what’s been going on over the last three weeks.

A few Fridays ago, I met with my oncologist to hear his game plan for the chemotherapy regimen portion of my treatment. The meeting lasted a couple of hours. First there was your basic blood draw followed by a short wait in a non-descript lobby. I was then summoned into an exam room where I met my doctor and we talked. I would guess his age around mid-thirties but the fact he has a daughter at Purdue means my guess is a little low. I’m bad at figuring ages. And doctors today seem to be looking a lot more fit than the doctors of my childhood.

After exchanging greetings and some small talk, he asked me what I knew about my upcoming treatment. I suspect doctors routinely ask this question because it helps them gauge where and how to begin the dialogue. I told him I understood the basics about chemo for HPV tumors but that was about all.

He told me he’d been informed I was going to be a part of a national DNA blood study involving HPV cancer and then asked if I was willing to take part in a similar study being conducted by the local medical community. After I nodded yes, he went on to emphasize that HPV cancer of the head and neck is becoming increasingly prevalent in males. I think he used the term “alarming prevalent”. I once again nodded, acknowledging I knew.

He then detailed I’d receive my first chemo treatment Wednesday with a drug called Cisplatin. The plan was I’d receive the drug on three separate occasions spread out evenly over the course of my 30 radiation treatments. The dosage I’d receive was more than double that typically administered but, given all my blood tests and vital signs, he and the radiation doctor were in agreement this would be the best plan for me. Otherwise, I’d have to have the chemo administered every week but obviously, at a lower dose. Okay I thought.

I was next informed Wednesday’s treatment would last nine hours or so. First, I’d be given a couple of hours of a saline drip followed by five hours of the chemical and then the remaining time absorbing more saline. Then I’d come back for the following four days to spend two hours on each of those days getting more saline solution to help wash the Cisplatin out of my blood stream.

Apparently, the shit is not user friendly. But I expect most poisons aren’t. However, if they made one of those TV commercials promoting Cisplatin’s efficacy by showing a loving couple frolicking through an orange grove on a beautiful sunny day, that same couple would be on their way to their third divorce by the time the potential side-effects were done being read. I left our meeting being told that, after chemotherapy, I’d walk next door and begin my radiation treatments. No big deal I thought.

The following weekend came and went before I knew it. One thing I’ve witnessed with this disease is it causes time to become skewed. It flies when it’s funneling you towards events you aren’t looking forwards to. And it stops when you arrive at a dreaded destination. It’s as if you’ve entered a new dimension.

Realizing Wednesday was barreling towards me, I thought I’d put my remaining few “free” days to use making special foods. Sort of a last meal weekend kinda thing before radiation destroyed what was left of my taste buds. I planned to cook some great stuff. By the way, I’m a fairly good cook. Being single off and on for the last thirty-years sort of forces you to learn the art unless you want to pig out on pot pies and cheeseburgers all the time.

So anyways.

I started my meal fest by braising beef short ribs in a wine reduction sauce for about eight hours and making parmesan polenta as a side. And it was absolutely wonderful, at least according to those who ate it. As for me, I took only a couple bits. I simply couldn’t taste the flavors.

The loss of taste has, in recent months, attracted a great deal of National attention due to the Covid virus. As for me, I could never exactly grasp what it means to lose your sense of taste. But after two surgical throat biopsies which have partially destroyed my taste buds coupled with 11 rounds of radiation, I’m becoming somewhat knowledgeable about the concept.

Allow me to explain. Lack of taste means that the flavor sensation in eating a particular food is either totally or partially absent. The predominant sensation left is that of feel. Take deviled eggs for example, one of my favorite foods I wind up eating only at holidays or on special occasions where someone brings them as a passing dish. I bought some premade the other day while I was in search of foods I could still taste. I put one in my mouth and tasted nothing. I did however experience the awkward sensation of chewing on a rubbery substance (the white) and feeling a glue-like paste (the deviled portion) sticking to the roof of my mouth and between my gums and cheeks. The experience was so disappointing I wound up spitting it out. Same thing for fruit cake and pie. I was unable to sense any flavors, even sweet.

For most people, I suspect a temporary lack of taste is more an inconvenience than it is a health problem. However, if you suffer from cancer or any other serious disease, it poses a very serious risk. That’s because lack of taste can lead to a lack of hunger. Food simply becomes little more than flavorless dissolvable cardboard you put in your mouth. You lose or, worse yet, grow an aversion to many of your favorite things to eat. And without food there can be no nutrition, a deadly result for someone who continually needs to build their strength.

Fortunately for me, I can still taste milk and certain cereals. So, I spent the rest of my food bonanza weekend eating Frosted Flakes and Checks Mix. At least boxed cereal saves time and money. Like I say, you take your blessings wherever you can find them. And by the way, I had no idea how many different cereals there were until today.

The following Monday and Tuesday, I went to work and met with everybody in my division. I used the time to transfer all of my upcoming cases to some of the younger kids and go over anything about the cases which might be out of the ordinary. While they paid close attention to my comments, I could sense they really didn’t need me to explain anything to them. I think they probably listened out of a sense of courtesy for an old man whose pretty sick. The truth of the matter is the Allen County Prosecutor’s Office can survive without me. In fact, this entire world can survive without me. Nonetheless, it’s a little unsettling to come to terms with this cold reality, especially when you are facing a life-threatening illness. But that’s the nature of this beast called life.

During the afternoon on Monday, I met with an oncology nurse who gave me a book informing me what was about to happen during the next thirty or so days. Obviously, I’d heard and read about the treatments before so there really wasn’t anything she told me that was new. She presented her version of upcoming as something somewhat drab, almost ordinary. And I left our meeting even more secure thinking this isn’t going to be a huge flash, at least not out of the gate.

Then came Wednesday.

I arrived for my chemo around 7 a.m. My spirits were really good because I felt a sense of accomplishment having arrived at this portion of my journey, largely intact. After all, it had been almost three months since the shit first hit the fan and I’d been through a lot already. I was immediately given some blood tests followed by a short meeting with my doctor. Then I was taken to the “green room” which is one of perhaps seven different chemo areas connected together. Each “pod” as they’re called is equipped with a nurse’s station which overlooks the recliner chairs of the particular pod as well as the machines used to dispense the chemo.

My nurse Stephanie approached me, flattered me with small talk and laughs, and hooked me up to the IV machine. She mentioned noticing that I hadn’t had a port installed which meant she’d be required to find a new vein on me each time she administered chemo or the follow-up saline rinse. I told her I didn’t think I needed one since I’d only be administered three chemo treatments. She responded by giving me a look that conveyed her doubts about my optimistic perspective and then continued on with her duties. I reclined back in my chair as she started the saline drip. She brought me a blanket and a pillow and I drifted in and out of sleep.

I was pretty much asleep when a buzzer went off on my machine alerting the nurse my saline drip was completed. She finished waking me and explained steroids would be infused next. No problem. About a half hour later when the steroids were finished, she began infusing a common anti-nausea drip. But as it entered my blood stream, my mouth immediately experienced a strange metallic taste and my body started convulsing. It was if my entire being was being electrically shocked. My ability to sit, stand, or even move was basically paralyzed. Almost immediately, staff and supervisors came running and discontinued the drug and then substituted some type of antidote which helped calm me down. At that point in time, I was certain I was going to the emergency room due to the severity of my reaction. Surprisingly, most of the staff was caught off guard because they had never witnessed anyone have an allergic reaction to this particular drug.

After about thirty minutes, I regained my composure and my nurse continued my treatment by infusing the Cisplatin. Understandably, I was a little on edge wondering how the main drug would affect me given the very recent past. However, nothing more out of the ordinary occurred during the following six hours of chemo.

When I was finished, I was prescribed some drugs for nausea and sent next door to radiation. There, I had my mask strapped to my face and radiated. It was a totally painless procedure which took less than 20 minutes. I got in my car, drove to the pharmacy, and then went home where I got something to eat and went to bed.

Sometime in the early morning hours of Thursday, I awoke and experienced my first wave of nausea. Obviously, I’ve been sick before to the point of vomiting. But the nausea I experienced this particular morning was beyond anything I can remember. It was an unpleasant sensation that rippled throughout my entire body before causing me to vomit. I’m not sure how many times I got sick, I’m guessing three or four. To make the event even more memorable, I got the hiccups. And after a wholly miserable night of rest, I drove myself to the hospital and started my four days of saline drips.

Thursday was uneventful. The saline drop went fine and there was absolutely no effect felt from second day of radiation. The nausea from chemo had passed although I was armed with vomit bags strategically placed within reach of me throughout my house, next to my bed, in the bathroom, in the kitchen, in the car, and in my backpack. With respect to my backpack, it’s become my new cancer companion. A while back it was my trusty travel companion and it contained, among other things, fake designer sunglasses, bottle openers, wine openers, plastic bottles of bourbon and/or rum, and other assorted sundries. It now comes loaded with feeding tube syringes, protein drinks, vomit bags, and my latest “can’t do without”, adult diapers. Friggen diapers.

So anyways.

Friday was basically a repeat of Thursday although I started feeling extremely fatigued and was experiencing a very noticeable lack of hunger primarily do to lack of taste. My chemo nurse Stephanie came to my aid by demanding that she be allowed to help me master my feeding tube even though that wasn’t her responsibility. Up to that point in time I hadn’t used the tube for nutrition or hydration. I’d only poured water into it to make sure it was unplugged and ready for use when I needed it. I think she was sensing that I was at the “really needed it” point in my treatment given my recent nausea attack and possible dehydration.

During Friday’s infusion, she helped me feed myself with two cups of water and a carton of protein shake. It was actually pretty easy to master once I got over the stigma of having to pour liquids down a tube sticking out of my stomach. It had now become resoundingly clear that my battle with throat cancer could not be won without my feeding tube. It’s just that simple. So, keeping in step with my Buddhist mindset, it was now time to make friends with that plastic tube protruding from my gut.  

It was also becoming clear just how much a wonderful nurse can aid a person in this struggle. I was incredibly fortunate to meet Stephanie from the get go of my chemo treatment. She shares the same whacked out sense of humor with me and she’s taken it upon herself to have me assigned to her if she’s on duty during my treatments. I simply can’t say enough about her or about the other marvelous caretakers she shares her shift with. And trust me when I tell you, these men and women caregivers are just huge blessings. They are lifesavers.

By the way, experienced oncology nurses are pretty talented at informing patients about the ins and outs of what happens throughout the process. My nurse has made it fairly clear from the beginning there are some turbulent waters ahead for me. She also took it upon herself to tell me I really needed a port. For those of you who don’t know, a port is a surgically implanted “hole” in your upper chest which allows easier access to the blood stream for infusions or blood tests. And while I didn’t necessarily disagree with her, I basically told her I didn’t want to undergo any more surgery. I’d live with a few needle pricks here and there. And once again I saw that look on her face.

Saturday came with a saline solution but radiation takes the weekends off. So, I left the hospital and went shopping for food. Actually, searching for food is a better description. I was trying to find anything I’d enjoy eating. Something I could taste, even a little. Chocolate covered cherries…no taste. Pumpkin pie…no taste plus the crust was revolting… Canned peaches…no taste. I wound up spending fifteen dollars on food that was actually disgusting. No taste, unpleasant texture, I struck out once again. So, it was Raisin Bran with bananas for dinner followed by a carton of protein drink fed to my stomach via tube. But Saturday night marked the true beginning of some serious problems.

On my way to the bathroom, I fell down. No, dizziness to speak of, just simply fell down. I thought it was a passing feature of chemo much like the nausea so I sort of blew it off. Then when Sunday morning came, I took my 125-pound dog for our regular morning weekend walk through Lindenwood Cemetery. What is typically a couple mile walk over 45 minutes or so changed into a very short walk where I had to sit and rest every five minutes. Again, I chalked it up to another unpleasant feature of the treatment regimen. I went to bed very early that night after having fallen at the doorway threshold of my house.

Monday came and I went to treatment. Stephanie wasn’t there so I did very little talking and huddled under a blanket until the saline drip was done. I then walked very carefully next door to radiation. Afterwards, I drove myself back home and made something tasteless for dinner. As I was about to enter my bed for the night, I suddenly fell catching my mouth on my bedpost. Even though it was dark and I was laying on the floor next to some towel I’d previously used while I was nauseous, I could feel the blood run down my face. My brother heard me and helped me to the bathroom where I discovered I’d bitten through my lip. How I escaped without losing any teeth, only God knows. Nonetheless, I spent the rest of the night sleeping on the floor in my bedroom. My brother wanted to call someone but I convinced him I was fine.

In the morning I awoke looking like walking death. Realizing this might be more than just a typical reaction to chemo, I had my brother drive me to treatment.

He dropped me off by the front door and tried to persuade me to let him help me go into the building. I told him I was fine and walked in by myself. As I reached the second entrance door, an elderly volunteer went to check my temperature. As she reached for my head I collapsed once again. The next thing I remember is waking up in a hospital bed.

I spent the next two days and nights in the oncology intensive care unit. Almost every hour I was awakened and administered a serious of tests including your basic health checks such as oxygen levels and blood pressure. It was revealed that my hemoglobin count was seriously deficient meaning I was losing red blood cells and the precious oxygen they deliver to the body. My hemoglobin count was 4 which would be much akin shock-wise, to learning your loved one tested .04 when they were pulled over for drunk driving. Also, my kidney functions were abnormal. This caused me special concerns since I’m a diabetic however those concerning numbers have since gone back to normal.

They eventually got my hemoglobin numbers up to acceptable limits by giving me six or seven pints of blood. However, during my stay I was deemed a “fall” risk so I was confined to my bed meaning, among other things, I had to urinate in a bottle while laying down. When they brought me food, it consisted of items I had no interest in eating. By this time, I’d completed seven or so radiation treatments and my taste buds were basically toast. All in all, it was a fairly miserable ending to my second week of cancer treatment.

However, I have to chalk up a win to Stephanie, my cancer nurse. After being blood tested for the umpteenth time, I requested my physician’s assistant schedule me a port surgery as soon as possible. By 4 p.m. Wednesday they were wheeling me down to surgery. In fact, it was pretty much the same crew who did my feeding tube. And even though I was given medication that was supposed to keep me from remembering the procedure, I remember most of it except for any pain. We were all laughing about something and the doctor and I were talking about dogs because he just got a German Shepherd. I have to say, surgery was probably the most enjoyable part of my two day stay.

After my release, I continued to go to radiation. As of the Wednesday before Thanksgiving, I’ve completed 11 treatments because they used one weekend to give an extra dose. As for chemo, I receive my next dose December1 and then three more doses, one every week after. These doses will be about forty-percent of the dose that sent my hemoglobin reeling. And my concern is that my recent blood tests show my numbers, while within acceptable ranges for treatment, to be very low. I’m hoping I can get them up to 12 however they’re currently a little over 8 ½ meaning that if they go much lower, I’ll be required to have another transfusion before radiation. And I don’t want anything to get in the way of this train finishing its trip on time.

So, I’ll be enjoying a four-day holiday free from treatment starting Thursday. I’m going to use this time to see if there’s a secret food out there somewhere I can taste and enjoy. I’m also going to use it to make sure I’m hydrated and properly nourished. Like I’ve already said, I’m fairly confident this whole mess is going to get worse before it gets better. So, I’m battening down the hatches and getting ready for war. That’s just the way it is.

So, on my final day of treatment I decided it’s time to face this mess like I’ve always faced my better messes. I leaned back in my chemo chair, put on a pair of sunglasses, hooked up the earbuds, and prepared to rock away. And the song I chose literally came out of nowhere. Wasn’t on any of my playlists so I looked it up on YouTube as soon as it entered my head. Hadn’t heard or thought about it for decades until the very moment I decided to rock through all this nonsense.… but it was just so so perfect and in such a bizarre way……..

“and I don’t wanna go home”…