The Long Walk: From Lymphoma To Survivor – A Journal

By William Potter

Bill Potter is a steely-eyed killer. At least he thinks he is. But when a disease, which normally strikes small children in sub-Saharan Africa, stops the retired Army Infantryman in his combat boots, he discovers what bravery, love, and fighting are really all about. The Long Walk is the devastatingly honest and sarcastic journey of a self-confessed manly man through the hell of Lymphoma. Full of helpful advice, shade tree science, funny stories, and a bedside seat to a life and death pitched battle, The Long Walk is an essential cancer primer for patient, family, and health care professional. This e-book is Bill Potter’s true trek captured from his blog where he introduces readers to his wife, two staff Teddy Bears, exploding (yes there are explosions) catheters, and a bevy of dedicated nurses who save his life. Along the way he learns the valuable lessons he didn’t know were hidden in the disease.

• Language: English
• Publisher: William Potter
• Release date: Mar 22, 2013
• ISBN: 9781301484980

William Potter

Bill Potter is a journalist, playwright, retired Army officer and most important to him, husband of Kate. He is also a newly minted cancer survivor and during the trek he kept copious notes, which were the foundation of his first book “The Long Walk: From Lymphoma To Survivor – A Journal.” Bill is working on what he calls “Great American Novel.” He holds an MA in Humanities from California State University – Dominguez Hills, and a BA in Journalism from the University Of Rhode Island.

Book preview

The Long Walk: From Lymphoma To Survivor – A Journal

By

William J. Potter

Copyright 2013

Smashwords Edition

Cover design by Rita Towes

Edited by Lyn Anderson

Photographs by Bill Potter

This ebook is licensed for your personal enjoyment only. This ebook may not be resold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author

Coolest Stories

Short Introduction

How The Hell This All Started

Burkitt’s Lymphoma

PET Scan

Performance Data

Lost Between Two Shores

Ommaya Reservoir

Rigors

Nurses

Ommaya Hide and Seek

Hyper R-CVAD

Chemo Suite First Visit

Family Visit

Hickman Catheter

Methotrexate

Unrelenting Upset Stomach

Platelets #1

Perkins, Ozymandias, and Chemo

Funniest Cards

20,000 Lymphoma Fatalities Every Year

Exercise Recovery

Greeting Card Judging

CT Scan Terror

More Cards

Platelets and Exercise

Indignity

Infected Hickman Next Step

Feelings I Can’t Quite Articulate

Earthquake I Missed

DECADRON Doth Murder Sleep

Pump Wars

Scared For Sure Cytarabine

In The Hospital For Neutropenia

Just One More Thing – C-Diff

The Boys of Bummer

The Joe Pesci In All Of Us

Getting Fired

Ejection Fraction

Shots Rang Out

Hickman Removal

In The End

A Single Pushup -- Damn!

Top Ten Recovery Activities

IVIG

The End

Short Introduction

I tried to write this introduction a bunch of times and it just never captured what I wanted to tell you.

So here’s the deal – you are about to get inside my head and a lot of it won’t be pretty. Well the outside of my head isn’t all that pretty either, but that’s a different story, which leads me to this point – this is a different kind of book. I’m not a celebrity; I’m just a regular person like you, who got into a tussle with Non-Hodgkin’s Lymphoma and learned some stuff. Now I want to share it.

You see, I found myself not being able to satisfactorily answer anyone’s questions and it got to the point I was giving the same bad answers several times a day; people weren’t happy and I looked stupid. It was sometime between my bowel resection and cancer diagnosis that I figured I better write a blog. That way I can tell one story, one time, and get it right.

That’s how it all started anyway, but pretty soon the blog became my personal journal that helped me deal with all the life and death hubbub that goes into fighting cancer. People seemed to like it with many saying it gave them an understanding they didn’t have before.

So here it is in all its glory.

I believe everything I wrote happened exactly the way I describe it, but I am self-aware enough to tell you that between chemo-brain, stress, fear, Demerol, and confusion, I could be wrong. Simply, I think I’m telling you the truth, but like most eyewitnesses I may be unreliable. Oh well.

The entries appear in the order they were posted at http://bllscancer.blogspot.com/. The only thing squirrelly is the times the website said the posts were entered. For some reason – known only to the cyber Gods – there is a two-hour difference between my actual writing and the time the post records on the site. I corrected most of that but one or two whacky ones may have snuck through.

There are links throughout the book so you can see some incredibly beautiful pictures (of other people) or go to sites with legitimate info.

Many of the posts were written in the wee hours of the morning and may not make perfect sense, but I don’t claim to make perfect sense, or imperfect sense for that matter. They just are.

Finally, I will include some back-story info that I couldn’t put on the blog due primarily to fatigue and lack of perspective.

A little bit about me -- before I let you in my brain. When this all started I was a 53-year-old, retired Army Lt. Col. I worked at the Delaware Workforce Investment Board as its deputy director and spent most lunch times either lifting weights, running, doing pushups, or running up and down the DOL headquarters’ back stairwell. I always embraced a lifestyle of exercise. I was in real good shape even though I was a bit chubby.

I guess that’s it.

Oh, oh, oh, three last things.

1. If you are reading this because you or a loved one has cancer, I hope it helps and realize you are not in this alone.

2. If you are sick and have to go through chemo, DO NOT CHASE NUMBERS. It’ll drive you nuts. It is akin to being on a diet and stepping on every scale in town looking for the one that will weigh the lightest – just let it go. It’ll work itself out.

3. When you are in the hospital, try and make your room a place where nurses like to hang out. They really don’t have a place to go and it is always good to keep nurses happy.

I guess that’s really it.

Peace.

SUNDAY, MAY 1, 2011, 07:02

Welcome To MY Cancer Journey

I am very excited about this upcoming fight. Over the next few months I will share with you my cancer journey including the pain, despair, and ultimate joy of victory.

It's about 2230 and I am a bit tired. Tomorrow I will be posting a long detailed and most likely boring review of where we are. I am hoping for lots of gross pictures. In fact let's start with this one.

Monday, May 2, 2011, 08:40 A.M.

How The Hell This All Started

A few weeks ago I thought I had come down with some kind of stomach flu or some stressy kind of stomach thing.

I went to see my doc and she said I was probably okay and it would pass. Well, after a couple of weeks of feeling lousy, I made an appointment at the doctor’s office, but my doc was off. The receptionist scheduled me with another doc.

So I go to see this other doc and she was a bit more worried and ordered a CT scan. I started feeling a bit better and was going to blow off the CT scan, but my little voice told me to do it. Now, it should come as no surprise that every time I ignore my little voice I invariably end up in trouble. So about two weeks ago I go to this CT scan.

If you’ve never had a CT scan, they’re pretty painless and not even very inconvenient. So I go in have the scan and Kate and I decide to go out to dinner at this fancy schmancy steak joint called Firebirds. BTW, if you ever want a good meal that’s the place.

Ever have a doctor call your house?

I can’t get a doctor to call my house even if I owe them money. So Kate and I come home from Firebirds and my message light is blinking on the home phone. When I play the message, it’s my regular doc.

Just trying to reach you, she says. It’s after 5 (p.m.) and I am going home. I’ll call you tomorrow.

I look at Kate and we are a bit … bemused?

That’s ominous, I said chuckling.

Kate said it was probably a follow-up to tell me they found nothing. I could tell that she really didn’t believe that, but you know I did. I thought it would be no big deal

Well the next day it turns out I was 180 degrees out. My primary care doc calls my office at work. She says I have a sizeable mass in my colon and will need major surgery. I almost fainted.

I am trying to find a surgeon for you, she said. I’ll call you later.

Call me at home, I said. I need to go home and tell Kate.

That’s a good idea, she said.

If you’ve never had that long drive to go find your love and tell her/him some really bad news they don’t realize is coming, take it from me, the road moves quickly under your car.

There is no traffic and your bad news bullet train makes it home in record time even though it seems like there should be some delay. Probably the longest, shortest, worst ride between work and home one can imagine.

I pull into the driveway; tears streaming down my face, because I know in two minutes things will never be the same again. As soon as I say the words, Honey I have to have an operation, there are no redos or take backs.

So I tell Kate the news and she cries, but is remarkably resilient and positive.

Sometime, and I don’t remember exactly when but my doc calls and tells me I have an appointment the next Wednesday with the big muckety muck colon surgeon at Christiana Care.

I won’t last that long.

On Saturday Kate and I go to the movies and see Hanna. I am miserable. About a third of the way through the movie, I go to the bathroom and puke my guts out. I come back to my seat and tell Kate I need to go home.

It’s a cold, wet, windy day. As we leave the theater, Kate says, You’re going to the ER.

Bullshit, I said and began puking into the wind. The wind snaps the bile back into my face and I look at my wife.

You’re right, I said. I need to go to the ER.

We ride to Christiana Care.

When you walk into the ER, the staff is segregated from the patients in what looks like a prison visiting room. The staff is behind several inches of thick glass and papers are passed via a cut out in a steel counter.

I get to the window and produce my ID and insurance card. I feel vomit welling up in my mouth and run outside ending up on all fours in front of the ER vomiting buckets.

The rain, which hadn’t let up at all, was soaking through the back of my shirt and pants as I stayed there on my hands and knees in the semi-circular front lawn with rain dripping from the back of my head washing my face in streaks.

Sir, sir you have to come in here, the woman shouted from the doorway.

Two male nurses – big guys – built like the thuggery from some bad Sci-Fi movie about an evil insane asylum, came out, picked me up off the ground, and half carried, ushered me back in the hospital.

Sir you can’t do that, we need your information. Is there anyone with you?

At that exact moment Kate walked in.

I’m with him.

We need his information before we can do anything, but he ran out the door to vomit. We can get him a small pan if he is still sick.

You better get it for me, because I’m not done.

The woman shouts something in hospital speak across the room.

I am admitted that night.

I think it’s the next day when I meet Dr. Colon Guy and they schedule my surgery for that Wednesday.

When they go in they discover the mass and it appears to be cancerous. The docs take it out and send if off to do whatever it is that is done with tumors.

It turns out the tumor is a lymphoma, so I am not quite sure what the next steps are. But I am pretty optimistic.

Back Story Note: There are some holes in the blog because a lot happened from the time I found out I was sick until I actually started writing. Here is a case in point.

When I finally made it to a bed in the ER, a parade of doctors and nurses came in to probe me, feel me up, shake their heads, mutter to each other, and walk back out. They gave me some anti-puke medicine injections, some really good painkillers that got me high and after several hours I was told they were keeping me.

I was wheeled up to the fourth floor where my Odyssey really began.

I’d never spent much time in hospitals so my understanding of it all was pretty modest. There were nurses that were in and out all the time taking blood and checking vital signs and it turned out, denying me food.

Eventually I met the colon guy.

He was a short guy with curly graying hair who was supposed to be a surgical wizard. Although I am one for banter, he was not. He came in, looked me over, asked some questions, and told me I was going to have a dirty colonoscopy the next day and I wouldn’t get any food until some time after that.

A dirty colonoscopy occurs when the patient hasn’t had enough time to prepare. Suffice it to say it was one of those rare times where I was glad to be the patient and not the doctor. I’m sure there was a lot to wade through. Get it? Wade through? Heh, heh, heh.

So anyway he went in, had a look see, and I was scheduled for a bowel resection in a day or two, on that Wednesday specifically.

That day I was wheeled down from my room on the fourth floor, to the operating room waiting area. It was like an airport (but I’ll tell ya more about that later). Anyway, it seemed like every five minutes somebody would come by and ask if I knew why I was there. It was as if I had to pass a quiz before they’d operate on me.

Your name, a nurse or doctor would ask.

Bill Potter.

Do you know why you’re here?

Bowel resection.

You sure?

Yeah, I guess so.

Okay good.

After the umpteenth time of this, a young woman, out of place because she was wearing a dark wool sweater and dark wool skirt, wandered about asking different questions. Finally, one of the multitude of scrub-clad people walking back and forth, stopped and talked to her, and pointed at me. By this time I was getting a pre-anesthesia and I was a bit groggy.

Hi, she said. Are you Mister Potter?

Yes. And who might you be?

I’m with the Helen F. Graham Cancer Center and we would like permission to study your tumor when it is removed. All you have to do is sign this release and I’ll be on my way.

Cancer!? What do you mean cancer? Nobody ever mentioned cancer to me. What do you know, that I don’t know? I asked.

You know that look dogs get when you make a funny sound? They kind of turn their heads to one side and look at you with befuddlement? That was the exact look on this woman’s face.

Oh, she said recovering. We don’t know anything yet. This is just in case.

I was not sure if it was the pre-anesthesia, or my overall tiredness, but I figured what the hell do I care and signed the paper.

Shortly after that she left – I’d say scamper was a good term.

They wheeled me into the operating room. I don’t recall much about the layout of the room, but it struck me as austere and nothing like the amphitheaters you see on TV.

My wife was in a surgery waiting room. She said the doctor came in and told her the sizeable mass was a tumor and more likely than not cancer, but they wouldn’t know anything until it was analyzed. She broke down and cried, called my brother and one of my two sisters.

When I woke up hours later I didn’t remember much of anything; there was some babbling about black buttons dispensing pain medicine; and no food for about a week; and some nurse was hanging a giant white bag of nutrition goop on my IV pole.

Of all the things going on, the only thing that caught my interest was the button controlling the pain medication. It seemed like there was going to be a hidden benefit to all this after all. The stuff was called Dilaudid aka hospital heroin.

Every 20 minutes or so, I was allowed to give myself another dose of this incredibly strong painkiller. And that’s exactly what I did. I thought I’d get a little stoned to make the time go by faster, although that’s not exactly what ended up happening.

I didn’t realize it, but this drug had some nasty side effects – with hallucinations and agitation being top of the list -- at least for me. So I was pumping away at this thing and pretty soon night came and I settled off to sleep and the darkness of the room and the posters on the wall announcing different hospital policies started changing shape and my depth perception went haywire.

Hospital rooms are pretty small, but soon I was convinced that I was on some wharf standing next to a submarine with Toulouse Lautrec paintings on clapboard walls. Soon a nurse came in my room and I believed she was taking tickets to get on the submarine. It freaked me out, but I never quite made the connection between the drugs and the hallucination. (I was stoned, remember?)

This all happened the week before Easter Sunday.

On Easter Sunday, I was all stoned on this hospital heroin and enjoying a leisurely lunch of white goop through a tube running through my nose, down my trachea and into my stomach. Mmmmmm good! I was also enjoying a wonderful bouquet of water across my parched lips because I wasn’t allowed to drink anything yet.

I got to put the water on my lips using a stubby plastic applicator about the length of a broken pencil and a yellow triangular sponge used to dab water from a cup and onto my lips. You’re not supposed to suck the water out of the sponge, but all the patients do it because we’re either parched or, as in my case, stoned.

Somewhere about 1130 my brother Fred, his wife Pat, and Kate came to visit. While the conversation jumped around, I was completely distracted because I was convinced that I had somehow swallowed the yellow sponge tip off the water applicator for my lips.

I scratched the back of my throat with the back of my tongue making a arrghhrumph sound as I did some tongue gymnastics, coughed, and cleared my throat all at once.

Look, look, look down my throat, I screamed. The sponge is stuck. The sponge is stuck.

Kate, Fred, and Pat stare at me their mouths agog.

What are you looking at? I shout. The sponge is in my throat.

Do you want us to call the nurse? somebody asks. To this day I don’t know who.

This small redheaded nurse came in.

Mr. Potter can I get you something?

Yeah you can get this goddamn sponge out of my throat. Look, look, look.

This little nurse was a bit taken aback because even after losing many pounds from puking, surgery and a liquid diet, I was still well over 225 pounds.

Simply, I was a huge frikkin monster flipping out because I was hallucinating and convinced I was choking to death.

Sir, I’ll be right back, she said.

And she was, but this time with a syringe she popped into my arm and the last thing I remembered before I drifted off to sleep was my brother saying, I guess we’ll go now.

When I woke up later I decided not take another painkiller for the rest of my stay. I held to that save one or two exceptions during chemo, but I’m getting ahead of the story.

Several days passed uneventfully and pretty soon I could eat a restricted diet and drink fluids including coffee. (Yay!) Dr. Colon came in and told me I would get to go home that Friday.

Friday came and I was waiting around to almost 1900 when the doc came in.

I’m sorry, he said. I thought you’d be discharged by now.

No problem, I said. Hey did you ever get a read out on that tumor and find out what it is?

Didn’t anybody tell you? he asked casually leaning against a faux wood wall locker. You have cancer. It looks like a lymphoma. That’s probably good news.

What does that mean? I asked.

Whoa, whoa, whoa. You need to talk to a cancer guy. I’m a colon guy. But stop by my office in ten days and we’ll take those staples out and go from there. I have to send your tumor out for a biopsy and then we’ll know more.

They released me right after that. There was nothing else to do, but go home. I couldn’t drive for two weeks and had to limit my activity to breathing and telling bad jokes, so I began watching a lot of TV.

Well some people will tell you that TV is full of junk, but they are so wrong. Why together Maury and I uncovered a plethora of dodging dads, philandering fiancés, and just about every other crime