Purgatory

After being told about my tumour for the first time, I would go into three dark days waiting for results from my biopsy, which would turn out to be some of the worst days during my whole journey.

The rug of my life had been yanked out from under my feet and I was in a slow motion spin through the air waiting to crash down to the ground.

This is the downer post.

As luck would have it, my exam was on a Tuesday, which was my regular day to go on the road and do piano tunings for a local piano store. On this particular day, I had an especially grueling schedule involving a crazy amount of driving. Caring about tuning pianos was going to be supremely challenging.

But of course the first order of business was to call my wife, who had not yet even arrived at work. I've reflected on our conversation many times, and it's clear to me now that she was in just as deep a state of shock as I was, and went through the same, almost slow motion phases of comprehension.

My wife is a nurse, now working in the management of a hospital, and is as tough as nails. She deals with stuff like this all the time. I told her I had a tumour.

"Really?! Well, that's a blow." Understatement #3.

Even at the time I recall being amused by this response. A blow? Are you kidding me? But she was processing this all for the first time, and was as unprepared for it as I had been only moments earlier. As the conversation went on, the pitch of Dale's voice got higher and higher and I could hear the real distress in her tone. Then, life cut us short as she arrived at one of her numerous meetings scheduled for that day. We had to move on. Two minutes to tell the love of your life and best friend that you have cancer. See you at dinner. Have a good day.

In a startling bit of kismet, my first visit of the day for a piano tuning was this guy who, out of the blue, announced to me that he was home on a leave recovering from throat cancer. When I told him about my morning, he had me stop tuning his piano and we talked for an hour. I don't think I'd have made it through the day successfully if it hadn't been for that chance encounter. Since then, people are seemingly coming out of the woodwork to tell me their stories about cancer. I bet everyone I know has their own story about a friend or family member who has fought a cancer battle.

Piano tuning is a funny thing to do. To a layperson, it seems pretty boring and monotonous, but actually requires prolonged and intense concentration to do well. You have to shut out everything else out of your mind; stray thoughts, background noises, even emotions. You are a tuning machine. I go into a zone on my good days, and have been known to drool on the piano when in deep concentration. I think those couple of hours of tuning that day brought me back to my centre and gave my mind a break from the racing it would have been doing otherwise.

Still, I cancelled my remaining appointments for the week after that and tried to start making plans and making sense of everything. What a stupid idea.

It doesn't make sense.

My father grew up poor, didn't eat the things we're supposed to eat, never exercised, smoked since his teens, and is diabetic. Still going strong at 83. All my friends in my band smoke except me, and I get the cancer. In the last 10-12 years or so, since Madeline was born, Dale and I made major changes in our lives regarding our health. I stopped smoking. We lost weight. We started working out. We changed our diets. I thought we were doing everything right. Bam! Cancer. Do I sound bitter? I don't mean to say I wish it was someone else, but I don't understand.

I don't understand.

It's possible I'm looking back through glasses tinged rose by my happy ending, but I believe I truly never had a self pitying 'why me' moment. I did get pissed off because I couldn't make sense of it, and later on during my recovery there were some frustrated outbursts. The universe is indifferent and I wasn't about to start feeling sorry for myself though. No way. But I did feel lost and angry without a path of reason to follow.

So the days of that week were some of the longest and bleakest of my life. No answers, only questions. Fear. The unknown. And yes, staring my own mortality right in the face. Was I a good person? Had I done anything useful with my life? Big questions, and sounding a little maudlin in hindsight, but one of the standard catchphrases in all the support stuff is no one can tell you how you're supposed to feel. And there was pain. A funny thing about this time is that I never felt ill, but in those few days I was having terrible pain in my abdomen. I bit my wife's head off when she told me it was probably nothing, but she was right. It was only my mind playing tricks on me. Dr.'s A and B both told me this was quite common for someone in my circumstances but it only added to the confusion.

As you can imagine. I couldn't sleep and for the first time ever asked my doctor for some pills to help. Mmm, lorazepam. Even in times of distress, it helps to channel Homer. I don't like taking medication so this was a big deal for me, but nothing like the onslaught of drugs that was to come.

My next move/mistake was undertaking my own research about the disease on the interwebs. Don't do this. Ever. I made myself crazy for three days and was convinced my body was riddled with cancer. For years leading up to this time I had had some sporadic problems with indigestion and heartburn. Separately, some soreness in my left side was diagnosed as an enlarged spleen, but was nothing to be concerned about. Was my entire abdomen riddled with cancer?

It wasn't. But in the sort of free falling state I was in, I felt I had to do something that was going to give me some answers and so I fired up the laptop.

I did learn a little bit though:
  • 9 out of 10 people diagnosed with colon cancer are over 50. I was 47 at the time. I'm special!
  • There are over 9,000 deaths in Canada from this disease per year, second only to lung cancer among cancer deaths. Later on you'll see a rant about the disproportionate way cancer fundraising is done.
  • If caught early enough, surgery is often the only recommended treatment for this type of cancer.
  • Nearly half of those diagnosed die from the disease, but it is probably the easiest cancer to detect early and prevent.
  • Survival rates range from 73% for stage I to 6% for stage IV.
Really think about that term 'survival rate' for a minute. "I have an x% chance of survival". Based on what I knew at that time, the best case scenario was a 73% rate. Oh, OK. How do you process that? What does it mean? I mean, sure I get it from a statistical analysis point of view. But even now I'm having trouble formulating my thoughts about it, never mind conveying them in words. Had my life been reduced to a probability, a number? The list of unknowable things was growing, and fear confusion started feeling like a black hole growing inside me.
    Mercifully, the phone call from Dr. B came on Friday afternoon but I was out and it went to the answering machine. He briefly explained the situation in a caring and compassionate tone. Malignant. Surgery. June 8.

    We had to tell our daughter, but I barely remember it. I have a loving, caring and affectionate family unit but in my memory we all seemed to be internalizing a lot of things. Madeline took everything at face value and retained her composure - tough, like her mother - but withdrew to her room to process everything. Throughout the whole ordeal I would draw a great deal of strength from my family's stoicism, and also my desire to remain strong for them. I wanted to use these feelings to attack my fear the way cancer was attacking me. Right back at ya motherfucker.

    It was a very long weekend.

    9 comments:

    1. I cannot post a comment without sounding like a critic on the back of some autobiography jacket. But when I say thank you for sharing, that thank you comes from a very deep place. For some inexplicable reason I hadn't thought of Dale and yet I would be in her position. Your retelling of your 2 minute window to tell your wife made me cry. Again, your writing is Powerful. Or for me, Paoerful.

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    2. I have no words and Kelly said it better than I ever could. Your words are touching me in a way that I can relate to - with any shock but in a different circumstance.

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    3. Paul...Thank you so much for sharing this. It made me chuckle quite a bit as I recalled my own issues with suppositories and other insertions, but most especially, all the understatements. I'm very sure you had many many more understatements during this chapter of your life.
      I kept a journal of my colon cancer travels. Long story short...my dad was 42 when diagnosed with his colon cancer. He survived as his was caught early. I was just shy of 38 when diagnosed with Stage IV. I felt symptoms for 2 yrs and brought it to the attention of my GP. She new my family history and did not send me for further testing other then an ultra sound or a barium enema. Needless to say, she's not my GP any more lol. My cancer had spread to my lymphatic system. After 2 yrs and 3 different types of chemo, they told me to get my affairs in order, tell work I had to retire (although I was going to work during my 3rd chemo session, with a PIC line)I was going stir crazy at home. Diagnosed in 2003, told to get my affairs in order in 2005, and, oh...look it's now near the end of 2011. I'm happy to report, my oncologist said she felt she didn't need to see me any more for CT scans. I'm still going for regular blood work to make sure my counts are low, and I see my wonderful Dr. B for a yearly colonoscopy. I also forgot to mention, my younger brother had his first polyp removed at the tender age of 34. We go together for our colonoscopy every year. Not to brag...but he and I stay awake for ours. The first time I went for mine, I told my doc, who was stunned, "Doc?? How many people can say they're NOT full of shit and can prove it?"
      Ooops, sorry...this was supposed to be a short story lol. Paul...good luck on your healthy journey. I'm 47 now, and when people ask when my birthday is, I tell them EVERY day is my birthday!
      nadia - classynods@yahoo.com

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    4. Thanks for sharing your story Nadia

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    5. Hello, I can totally relate. I was diagnosed with colon cancer (sigmoid colon) December 2013, also at the age of 47. I had a low anterior resection in January of this year and am STILL recovering! Plus now I have partially obstructed small bowel from scar tissue of the surgery and can only eat toddler foods. It's been a (h*ll)ride. Thank you for sharing your story - so relatable. I blog about my experiences also xovivian.com Vivian

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    6. Hi Paul, I'm currently researching how cancer survivors talk about their experiences and feelings during the illness by looking at their blogs. I would like to ask if I could use yours in my research. If this is something you would like more information on, please feel free to contact me at 12011281@stu.mmu.ac.uk. Thank you for your time. Olivia.

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    7. You can get more information about colonoscopy here.

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    8. Get More information about colorectal surgeon

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