Sunday, May 16, 2010

Five Years of Cancer

It's been five years since I was diagnosed with cancer, so I thought I'd commemorate the event by posting something about it on this blog. But what I'm posting here today isn't something I wrote recently. Sometime in June 2005, after reflecting on my situation for several weeks and organizing a few thoughts that were wandering around in my head, I started writing things down. A few weeks after that, I ended up with what follows.



When I found out I had cancer, I didn't know how to react. I knew I wasn't supposed to be happy -- and I wasn't -- but I thought there were a few stages I was supposed to go through, like denial and anger, which I seemed to have completely bypassed.

(Before I go any further, let me clarify something. I understand that a lot of people have written about their experiences with cancer. I've never read any of those accounts, but I imagine that some of them are uplifting and inspiring, while others are poignant and bittersweet. Some are possibly a combination of the two. This account will be neither, since I'm not particularly inspirational by nature, and I'm not very good at being poignant. With that out of the way, I'll continue with my story.)

You might think that when you're told you've got cancer, it would come as a big shock. Maybe it would, but it didn't for me. One of the reasons the news was so easy to digest in my case is that it was fed to me in small doses. I didn't think I was perfectly healthy one day and find out I had cancer the next -- I learned it slowly over the course of a few weeks.

The first thing I learned was that I had a high level of amylase in my blood. I didn't even know what amylase was, but I found out it's an enzyme secreted by the pancreas. My doctor told me that a high amylase level didn't necessarily mean anything, but he said it was worth looking into. So he ordered a CT Scan.

When I went to get the scan, they had me get out of my clothes and into one of those hospital gowns that tie in the back. The dressing room had a full-length mirror that I couldn't avoid looking into, so I had an opportunity to look at myself without all my clothes on.

The first thing I noticed was how good I looked. I was in pretty good shape for a fifty-year-old guy who hadn't been inside a gym in about fifteen years. (I stopped working out somewhere in my mid-thirties, after I herniated a few disks in my lower back, but that's a story for another day.)

Anyway, I was happy to see how fit I looked. Even if my waist wasn't quite as narrow as it used to be and my upper body wasn't quite as muscular, my torso still looked more like a V more than any other letter in the alphabet. (I'm referring here to the Roman alphabet, by the way. There might be a closer match to my torso shape in the Greek or Cyrillic alphabet, but I haven't verified this.) For the past decade I'd been a vegetarian -- and practically even a vegan -- so I figured I had that to thank for my decent physical condition.

But a few days later, I got the results of the test: a two-inch tumor on my pancreas and a few abnormalities on my liver. My doctor ordered some more tests: a liver biopsy to find out what those spots on my liver were, and an endoscopic ultrasound of the pancreas, which in my case served no purpose other than to facilitate the transfer of money from patient and insurance company to hospital and doctors.

The doctor said I should have those tests right away, but due to an overabundance of sick people, the hospital was all booked so I had to wait a while for the procedures. The liver biopsy was scheduled for the following week, and the endoscopic ultrasound was scheduled for the week after that.

So I had two weeks to learn everything I could on the internet, and everything I read pointed to pancreatic cancer. The most depressing thing I learned is that it's usually fatal and that most people die from it within six months of the initial diagnosis. I started thinking of everything I wanted to do, and I wondered if I'd be dead before I had a chance to do it all. As it turned out, there weren't that many things I wanted to do -- which may be a revealing comment about my life in general -- but six months still didn't seem like a lot of time.

I'll spare you the details of the liver biopsy, other than to tell you that it's about a 30-second procedure that required me to stay in the hospital for seven hours.

Well, I will say one more thing about it. As soon as I found out I had a tumor, I gave up vegetarianism and started eating a lot of salmon. My diet had been heavily carbohydrate-based, which I wanted to change, but mostly I wanted to increase my intake of Omega-3 oils, which I was told have been shown to decrease the size of tumors. The only reason I mention this is that after the biopsy, they showed me the liver samples they removed from my chest, and I thought they looked a lot like slivers of raw salmon.

As for the endoscopic ultrasound, I don't have much to say about it, but only because I was so heavily sedated that I slept through the whole thing.

I didn't mind the tests so much; what I dreaded was the office visit -- the one in which I'd find out the results of the tests. I dreaded the thought of sitting in the waiting room for half an hour, then waiting in an examination room for another half hour, and finally being told that I have cancer.

Fortunately, I never had to endure that particular variety of mental torment. For some reason, when the doctor who performed the endoscopic ultrasound introduced herself to me, she casually mentioned that she had seen the results of the liver biopsy and they indicated that I had a cancerous islet cell tumor in my pancreas that had spread to my liver.

So the office visit on the following day was nothing to dread. I already knew the diagnosis: I had pancreatic cancer that had spread to the liver. That was the bad news. But there was some not-so-bad news as well. According to everything I read, it turns out that as cancers go, pancreatic islet cell tumors aren't so bad. People die from them, but it takes a long time -- a lot longer than six months. And the next day, the doctor more or less confirmed this. He said that islet cell tumors were rare and incurable, but they're slow-growing and not as life-threatening as the more common adenocarcinomas. So after reading so much about pancreatic cancer fatality rates, when I found out I had a less aggressive kind of pancreatic cancer, it was a relief.

As a result, I felt better knowing I had cancer than I did a few days earlier when I still wasn't sure. There probably aren't too many people who can say that.

I was in pretty decent spirits that day, all things considered. I don't know why -- maybe I was just being foolishly optimistic. But when I went to bed that night, I had trouble getting to sleep. It was confirmed: I had cancer. One part of me wondered if I'd live to see the next day, but that wasn't what was troubling me. What kept me awake that night was that I was afraid of what I might dream. I wasn't so worried about having nightmares -- I was more worried about having happy pleasant dreams, only to see them vanish in the morning when the reality of my condition hit me.

But each night was a little easier for me, and not being able to fall asleep at night was never really a problem.

It was harder to wake up each morning and face the day. Sometimes I'd lie in bed and ask myself, "What's the point?" But I don't know if that had anything to do with having cancer, since being able to get out of bed every morning was never one of my strengths to begin with.

I didn't have any symptoms, so most people didn't know I had cancer. I didn't try to hide it from anyone, but I wasn't exactly advertising it either. So one of the problems I faced early on was trying to decide how to respond when someone who didn't know about it asked me something like "How are you?" Most of the time, I just said "Okay," which seemed like a reasonable compromise between "Fine" and "I've got a rare form of incurable cancer."

The first time I did tell someone I had cancer, I heard the words come out of my mouth and they almost startled me. I'd never heard myself say "I have cancer" before. But with each person I told, it got easier for me. So the word "cancer" never had any special power over me. There was another word that gave me a lot of trouble, though. That was the word "incurable." I'd heard that word all my life, but it was just another word to me and I never paid much attention to it. But hearing it applied to a disease of mine gave it a whole new importance.

*

When you find out you have cancer, it's all you can think about at first. Everything else fades into the background. But life goes on and other thoughts keep entering my head, so knowing I have cancer is no longer the first thing on my mind. Sometimes it's the second, sometimes it's even the third or fourth. Sometimes I'm so busy with other things that I don't even think it's on the list.

I don't think about it much anymore, but during the first few weeks after my diagnosis, sometimes I lost my desire to live. It never lasted very long, and I never felt like actually killing myself -- but there were times when I just didn't feel like going on with my life. For example, one time I was stuck on the freeway in a traffic jam that lasted for about half an hour. We were barely moving, and there was nothing to look at except cars and angry drivers and concrete and asphalt in every direction. It was an ugly sight, and I found myself thinking, "This wouldn't be such a terrible place to leave behind."

I don't have thoughts like that anymore, and knowing that I may have a relatively short time left on this planet sometimes fills me with a certain peace. Suddenly, it isn't so important whether or not I accomplish anything significant in my lifetime, and as a more practical matter, I may not have to worry about having enough money for my retirement.

But I still don't have any symptoms, I still look good in front of a full-length mirror, and I feel just as healthy as I ever did, so I haven't stopped contributing to my 401-K plan yet. Maybe I don't know how to be poignant or inspiring, but at least I can be optimistic.

3 comments:

kichiguy said...

I suspect you wouldn't call yourself brave, but I compared to me ...

I had a basal cell carcinoma diagnosis which is less serious than a hangnail and just fell apart. Then almost five years ago my wife was diagnosed with Stage 3 colon cancer. I almost had a complete mental breakdown.

Glad you're doing well.

Guy

Caesar said...

I am also glad you are doing well. I've had other friends with diseases that were incurable at that time -- with one deciding to stop buying new shoes in 1987 since he knew that he figured he would never need them -- and guess what -- twenty years later that individual has now moved to Savannah, Georgia -- after going through many, many pairs of shoes...

leonid said...

Bob,
I recently found out from Caesar of your condition. I must say I was shocked. I honestly don't know what to say, other than usual staff people say, when they don't know what else to say..

I googled your name and came across of tjis posting. I must say, I admire your ability to think rationally about the situation. I can imagine it must be difficult, but it is the healthiest rout. Panic and despair are never good friends of a wise aproach.

From the bottom of my heart, I wish you full recovery.

Kind Regards
Leonid Orlov

P.S. In the even you want to communicate with me (I would love to) my email is lorlov@yahoo.com