Category Archives: Cancer

Malignant: My Imagination Takes Over

My Throat Hurts Already

I have no idea why but up until two days ago, I’d though radiation treatment would be a snap.

One of the first things I asked Dr. Pugh, my ENT guy, was whether I’d have to undergo chemotherapy or not. I’d always figured that was the nightmare of cancer. Dr. Pugh said he was fairly sure there’d be no need for chemotherapy.

BTW: I refuse to say “chemo” as if it’s some sort of nickname. It’s not my friend. I have no affection for it. It’s chemotherapy and let’s let it stay way away from me.

Anyway, I then asked Pugh if I’d lose my hair during radiation. No, no, he said.

Well, that’s that, right? I’ll get through this like a dream.

Swear to god, that’s what I’d been thinking.

I even described my upcoming radiation as “zapping.” Yeah, they’ll just zap my cancer away and I’ll go skipping off to frolic in the flower garden.

But, as Dr. Wu, my radiation oncologist, explained Thursday, it’ll be hell. His word. Hell.

So that’s why, for the last two nights, every time I’d toss or turn, I’d wake up fully and ask myself the following questions:

  • Why would anyone willingly go through with this?
  • Why would I let them destroy my sense of taste? Temporarily, sure, for the most part. But, still, for the rest of my life food just won’t taste the same even after I fully recover.
  • Why would I let them destroy most of my salivary glands?
  • Why would I subject myself to the torture of a burning throat for several weeks?
  • Why would I risk being unable to swallow for the same period of time?
  • Am I crazy?
  • Are these doctors, nuclear physicists, and various other researchers crazy?
  • Is life that precious to me that I’d make this deal to hold on to it?

Answer to the last Q: Um, I guess so. Uh huh. Yeah, sure.

Up until this weekend, I’d always considered imagination a good thing. I’d counsel people: Let your imagination run wild. Imagination leads to innovation, hope, optimism, invention, art — all those fabulous things we think make life worth living.

Now my imagination is fixed upon what my throat will feel like by the third or fourth week of radiation. I’m thinking of the worst sore throats I’ve ever experienced and multiplying them by, oh, ten. Toss in the sensation of charring and burning, with a dry, sore-filled mouth. Man, my imagination is good. I’d be a great innovator, hoper, optimist, etc.

Only now I’m imagining so well that I feel pain in my throat already.

Okay, step one in my mental prep for this ordeal: Control my imagination. So counterintuitive, isn’t it? I’ve never tried to control my imagination. Quite the contrary. This cancer business forces a whole new set of rules upon me.

The Loved One and I took a drive down to Louisville yesterday afternoon. I’ve been wanting to see the new bridge that Kentucky and Indiana jointly built right next to the aging, rickety JFK Bridge, carrying I-65 over the the three-quarters-of-a-mile wide Ohio River. The new span opened just three and a half weeks ago.

It was a perfect day for a drive. The sun, a rare visitor to these parts of late, was out. High, puffy clouds, temps approaching 40, and sparse traffic. We took backroads to get to I-65, passing through small towns and endless expanses of farmland with rolling hills and challenging curves.

We started out in the early afternoon and didn’t get home until after eight. Throughout the trip, The Loved One worked hard to remind me I wasn’t alone in this journey and that she loves me dearly.

Prior to Thursday, I’d been joking that I should have caught cancer sooner, what with The Loved One being so attentive and affectionate toward me and my friends all showering me with sympathy.

Ah, hell, I’m going to continue to make that crack. If I can’t handle this business with humor, I may not be able to handle it at all. Besides, a lot of my pals are touting me as a tough Chicago guy who can’t be beaten by this thing. There’s plenty riding on me to pull through it.

 

Malignant: Day 1

My Lump

[Written Thursday, December 31st, 2015]

Dr. Fred Wu seems to be a good guy. Knowledgable. Straightforward. Patient. I’ll need a guy with all these attributes over the next six months.

I just met him this afternoon. He’s a radiation oncologist. Once I was pitched over to him, I understood there was no turning back. Prior to today, the idea of cancer was still theoretical, nothing more than a word.

Now, it’s the real thing.

Here’s what Dr. Fred Wu said to me today, The Loved One sitting in the tiny office with us, trying her best not to let her eyes fill up too much:

It’s going to be hell.

I started feeling a bit dizzy. I also started feeling sorry for myself. I caught myself and said, internally, “Knock it off.”

A little background. There is a lump, on my neck. I felt it the first time in the spring. I figured it was a swollen gland. I get swollen glands in my neck a lot. They’re usually accompanied by a sore throat, maybe a fever, some exhaustion — the normal flu-ey type symptoms we all get now and again.

Only this lump never went away. In the summer, I kept caressing the lump. Perhaps I was thinking if I treated it tenderly it would go away and not turn out to be what I was afraid of.

I saw my primary care guy, Dr. Behney, in October for some normal maintenance. I’d promised myself while showering that morning I’d tell him about the lump. By the time I got to his office, the lump had slipped my mind — as it had each time I’d seen him since the spring. I see doctors a lot, what with my congenitally deformed heart and the fistful of drugs I have to take each day. The docs like to keep tabs on things, particularly the various levels of substances in my blood just to make sure they’re dosing me properly. A little too much Lasix, for instance, leads to a little too little potassium. That’s bad.

I’d seen Behney two or three times already since the lump announced itself. Each time I’d sworn I was going to tell him about it. Each time I forgot.

How can you forget a lump in your neck? Easy, especially when you hope and wish it’ll go away solely by dint of forgetting about it.

So, Behney and I got to the end of our visit and, as always, he asked, “Anything else?”

“Nah. I’m good.”

I started putting my shirt on and he gathered up his laptop and made for the door. Suddenly, it hit me. Oh yeah. Right.

“Hey, y’know, there is something….”

He stopped and turned back toward me.

“Yeah, you might want to take a look at this lump.”

He placed his laptop down and took my neck in his hands. Softly. Gently. Funny, you only let a lover or a doctor do something like that to you. Their aims in doing so couldn’t be more different. Then  again, they both desire the same thing — trying to get a sense, a share, in your vitality.

He squinted. He said, “Hmm.” His brow furrowed.

I didn’t like that one bit.

After peppering me with questions, peering down my throat, and feeling my neck for long moments more, he said, “I’m going to send you to an ENT doctor. We have to make sure this isn’t cancer.”

Hah! Cancer. Of course it’s not cancer, you dope! I can’t get cancer. Cancer is what other people get. I don’t smoke. I’m not an alcoholic. I’ve never had any other cancer before. All of which, I’d learn, are risk factors for head and neck cancers.

Cancer. What a joke.

Sure, send me to an ENT guy. I’ve got insurance. If it’ll make you feel better, I’ll go along with the gag.

Cancer. Sheesh.

Dr. Behney directed his nurse to set up an appointment for me with a Dr. Pugh. He added: “As soon as possible.”

Yikes. He’s serious.

I saw Dr. Pugh’s assistant a few days later. That’s another tip-off the docs aren’t kidding around, when they get you an appointment with a specialist in mere days. Dr. Pugh’s lieutenant — an appropriate descriptor since Pugh started out as a US Air Force Flight Surgeon, serving a couple of stints in Vietnam — told me I’d have to get a fine needle biopsy. Once the biopsy results came in, Dr. Pugh would see me and map out a plan of action.

“Is this gonna kill me?”

“Naw,” she said, laughing. “It may not be cancer at all.”

Like I thought all along. What a joke.

My pal Sophia told me she’d recently had a fine needle biopsy.

Does it hurt?

“The only thing that hurt,” she said, “was when they gave me the local anesthetic shot. That burned.”

So, when the fine needle doctor asked me if I wanted a local anesthetic, I told him no.

“I don’t blame you,” he said. “The anesthetic burns.”

He commenced inserting an impossibly narrow needle into my lump. As he dug around with it, I pondered why in the hell they’d want to give you an anesthetic if it burned. Especially since I couldn’t feel a thing as he angled his needle this way and that, trying to get a large enough sample of cells to determine if my lump was cancerous or not. I never have figured that one out.

The doc pulled his needle out and told me to cool my heels for about 20 minutes. He would put the sample of the lump material he’d collected on a slide and look at it under a powerful microscope, searching — hopefully in vain — for those tell-tale fast reproducing cells.

When he came back, he said, “Bad news.”

My eyes went wide.

It turned out the bad news was he wasn’t able to gather enough cells. And since he’d dug around so much, the area around my lump was swollen with blood. He couldn’t attempt a second foray into the lump that day because whatever he’d get would be contaminated by too many blood cells. I might, he said, have to be scheduled for a surgical biopsy. I’d just have to wait to find out what Dr. Pugh wanted to do.

Ick.

The doctor apologized. I told him not to worry.

So I waited to hear from Dr. Pugh. A few days later, I was at the store, the Book Corner, where I work part-time when I’m not writing books or posts for this communications colossus. My phone rang.

It was the office of my fine needle doctor.

“We wanted to let you know the results are in for your biopsy,” the woman said.

“What do you mean? The doctor told me he couldn’t get enough material.”

“Yes, that’s what he thought at first but after he analyzed the sample further, he was able to get a result. We’re going to send it in to Dr. Pugh.”

“Well, swell,” I said. Then a beat. “Um, what did he find?”

Another beat. I didn’t like the sound of her silence.

“There is,” she said, finally, “a malignancy.”

My legs got weak. It felt as though my knees would buckle. My eyes flooded.

Cancer. It can happen to me.

My co-workers, Patty and Laura, as well as the store owner, Margaret, were at the back of the place, chatting. The walk from the front of the store where I took the call to the back seemed endless. They sensed something was wrong as I approached. Three sets of eyes watched me.

“It’s cancer,” I said.

I plopped myself in a chair. The three comforted me. “Go home,” Margaret said after a while. “We’ll be alright here.”

“Nope. No way. I’m staying.” I had to. I needed to be around people. No telling how I’d feel if I had to drive home alone. Neither Margaret nor the others would accept it at first.

“No, really,” Margaret said.

“Are you crazy? Go home!” Patty, the tough gal, said.

“Go take care of yourself,” Laura, the natural foods, natural medicine advocate, added.

At that moment, loyal customer and equally loyal Pencillista Susan Sandberg came in. Susan’s had a major health issue of her own of late. She also lost her beloved daddy-o in the summer. I leaped up to take care of her. It turned out she took care of me.

“I just found out I have cancer,” I said. I hadn’t planned to blurt it out, but there it was. Susan hugged me tightly and told me I’d get through it. Susan’s a city council member. Somehow, her comforting words were weighted with that official stamp.

You grasp for any straw you can.

Susan grabbed a few books and left. I returned to my co-workers. ‘Y’know,” I said, “I’m not gonna tell The Loved One right now. What good’ll it do? I’ll wait until we see Dr. Pugh.”

“That’s a good idea,” Margaret said.

“I don’t know about that,” Laura said.

“What’s the matter with you?” Patty demanded. “You have to tell her.”

“Nah. Why should I make her suffer?”

We batted that around for a while. When Patty was leaving she said, “Tell her.”

I shook my head. “Unh uh. I’ve made up my mind.”

“Suit yourself,” she said.

The Loved One called minutes later. The very first thing out of my mouth was, “It’s cancer.”

I was right. She suffered.

That was all in early November. Since that time I’ve had a couple of CAT scans, a sonogram, and an endoscopy. The lump is a secondary cancer. The rapidly reproducing cells are squamous cells — skin cells — that have traveled through the lymph system from a primary tumor. Squamous cells normally don’t exist alongside the thyroid gland where my lump now resides. Dr. Pugh told us the primary cancer had metastasized.

That’s a scary word. As scary — perhaps even more so — than cancer itself. Both words, to the uninitiated, signify death. Dr. Pugh may as well have told us I was already dead. Sure, cancer treatments in the 21st Century are advanced. Thousands — even millions — of people survive cancer nowadays.

Still, the word is a curse. My mother, who herself suffered from Non-Hodgkins Lymphoma before she checked out two years ago, used to say when she was a kid people couldn’t even bring themselves to say the word cancer aloud. They whispered it or used codes like the letter C. Merely thinking about it tempted fate.

The primary, Dr. Pugh explained, probably was hidden somewhere in the back of the throat or at the base of the tongue. It could be a microscopic collection of malignant cells, a few of which broke off and travelled to the side of my thyroid where they reproduced dramatically. Dr. Wu told us today the primary may even have dissipated. It may, in other words, not even exist anymore.

Here’s a funny thing. Squamous cell cancer in a neck node is usually caused by the Human Papilloma Virus. Well, wait minute, you may ask, isn’t that a vaginal thing?

Why, yes it is. So how does one get a neck cancer from HPV? Answer: through oral sex. The Loved One apologized tearfully as we left Dr. Pugh’s office the day we learned that. I laughed. “It was worth it,” I said.

So, here we are now. I’ll have to have a full-body PET scan to make sure there aren’t any other tumors lurking in me. I’ll also have to visit a dentist to have any troublesome teeth extracted. That’s because I’ll have to undergo radiation therapy which will, as a side effect, deaden the healing capabilities of my mandible and maxilla and so I’ll never be able to have a tooth extracted again after my treatment. Radiation, if all goes well, will begin January 28th or so.

Oh yes, radiation. Up to today, I figured they’d zap me once and that’d be it. Twice, perhaps, if my lump turned out to be stubborn.

Um, no. I’ll have to be irradiated every day, Monday through Friday, 30 or so times, for a period of six to seven weeks.

This brings us back to Dr. Wu’s hell. Around the third or fourth week of radiation therapy, I’ll lose my salivary glands. I’ll suffer extreme exhaustion. I’ll have severe throat and mouth pain, so much so I won’t even be able to brush my teeth and may not be able to — gulp! — eat. Some people have it so bad that they must have a feeding tube inserted through a slit in their abdomen. My mouth will develop oral thrush. I’ll get sores inside my mouth and a big red spot on the skin over my lump. My beard may fall out, never to return.

My sense of taste should return, somewhat, after six months. Most of my salivary glands likely never will. The absolute best I can hope for is a 50 percent retention of my saliva production. I’ll have to carry water around with me for the rest of my life.

I’ll be suffering, in short, radiation sickness. Think of the survivors of Hiroshima and Nagasaki.

Yep. Hell.

The suffering won’t last forever, though. It’s the price I’ll have to pay to remain alive to see my beloved Cubs win the World Series in October. The odds are very good — excellent, even — that I will live. I’m lucky. Early on, I posed to Dr. Pugh the same question I’d asked of his lieutenant: “Is this gonna kill me?”

“It will,” he said, “if we don’t do anything about it.”

So, okay, we’re doing something about it.