The Slow Ascent Begins

You've seen me pretty much hit bottom with the triple whammy of the regular surgery and recovery, the bleeding out my butt, and the ridiculous nerve damage and pain in my arms and shoulders. And you know, what? That's as bad as it ever was, and I got to live. Really, Dr. B could have said, "How would you like to have the summer off and lose twenty pounds?" Doesn't sound so bad right?

The summer of 2010 was a hot one, but I spent most of it prone on the couch watching telly. In late August I was amazed when the hydro bill came and it was something like way more than double the normal amount, but that's the cost of being home all day, keeping the A/C low and having the TV on basically around the clock. The timelines really aren't too important to the story at this time, but by mid-August I was feeling well enough to go back and do a little bit of work, or so I thought. Physically I was OK, but mentally I was kind of a space cadet and really botched up my first few jobs.

In terms of the physical recovery, it was many weeks before I got to a point of having what I would call normal bowel movements. The bleeding lasted a long time, and I learned later that all those bad-ass antibiotics I took in the hospital basically annihilated all bacteria in my bowels, including the good ones. This makes for some exciting adventures when digesting food. The soundtrack of my life for six months was punctuated by seismic activity in my abdomen.

I was advised to try probiotics to reestablish healthy 'gut flora'. This is a pretty interesting area at the moment, and while it shows great promise as a healthy alternative to pharmaceuticals, most of the stuff is snake oil. There have been hardly any proper scientific studies done on these products and so in my case, it was pretty hit and miss finding something that helped. In my opinion, Metamucil is the greatest achievement of the human race.

And so this brings us back to poo. I told you there was going to be a lot of talk about it, because frankly it has defined the whole experience for me, and there's a lot I can say about it.

The worst thing is really having to go often. At its worst, it was about twenty times per day. If you're thinking to yourself, "Oh my god, seriously?", um, yeah. And so as I began to do some of my own research into this, er, phenomena, I saw that it is quite common among people who have had an anterior resection, which is the technical term for the type of surgery I had. So if this is common to the 20,000 Canadians who get diagnosed with this disease every year, where's the support and therapy for it? Heck, I'd have settled for a leaflet of some kind at least telling me that it's normal and here are a few things you can try. My mother had a lump removed from her breast a few months ago, and she was sent home with reams of documents telling her how to cope with the aftermath. I'm going to do some more number crunching on this, but to me it seems the allocation of fundraising and resources dedicated to this most prevalent and deadly of cancers is vastly below what it should be. But it has long been the lament of colon cancer fundraising advocates that they can't get people to talk about the disease. It's gross. It's about your bum and poo. I mean what are you going to do, start a brown ribbon campaign or something? In the end I did find some useful documentation on coping with the problem of frequent bowel movements, aka 'bowel management', but I have come to accept that some of these changes are permanent and I will have to adjust.

I keep coming back to the word lucky. I guess if I was really lucky I wouldn't have got cancer in the first place, but compared to so many others, I have much to be thankful for. In the depth of my misery during July I continued to research and reach out to others in online support groups and all that. (I never went to support groups in person. Not my thing.) I saw story after story of people who really had a bad deal in their recovery, who went through this stuff two or three times with recurrences, and some who paid the ultimate price and lost their battles. Even at my most recent oncologist appointment, the doctor was a bit shocked that I still have to go poop up to ten times per day, but he said, "It's better than having a bag". Damn straight. Other people have had their entire colons removed, and a J-bag constructed out of their small intestine. One guy who blogged about his cancer eventually found the only thing that allowed him to have a normal life was to give himself an enema in the shower every morning. He got used to it and thinks it's not a big deal. Wow. And I'm not going to talk about it much because it's outside my experience, but the things people getting chemo and radiation have to endure are astonishing,

I am very lucky.

By late July I was venturing out of the house for short trips, and was back doing a bit of work by mid August. This requires careful planning when frequent and unpredictable bathroom trips are required, so I would structure my life around them. Where I would go, how long it would take to get there, how long I could spend doing whatever it was I was doing. I can tell you, within about ten kilometres of my home, which retail stores have public bathrooms, and about how much time it takes to reach them from the front door. I also got good at estimating walking running time from my parking spot to the door. These things became important when deciding which store to go to first and where to park. I can't tell you how many times I burst in the door of a store like Cosmo Kramer and flew past the 'good morning sir', cheeks clenched.

I'm proud to tell you that I have a flawless safety record in public, with no 'accidents' in 462 days.

Now think about my frequency problems as they relate to work. I'm a piano tuner so I spend a lot of time in stranger's homes. I spent the first few months being terribly embarrassed about taking a dump in a customer's home. At first things weren't going too well, and I could never predict how long I would need to be in there. The first few weeks at home, long stretches of time would pass, and I began to count time not in minutes and seconds but rather in number of iPad Solitaire games. One time, a lady knocked on the door of her bathroom to ask if I was alright. Must've been ten games or so I guess.

Over time things got better and I learned to adapt my, um, technique (?). I became a master of the stealth poo. A number two ninja, if you will. I could be in and out of there so fast I didn't even need to turn on the fart fan. I'm still embarrassed to this day when asking for the bathroom, but what the heck, you have to get over it.

An upshot is that I now pretty much have the ability to poop on demand. Surprisingly, this is not a popular party trick.

A final word on the topic. Years prior to my diagnosis, I couldn't even tell you when, I had a change in my bowel habits. At some point I began having two bowel movements in the morning instead of one, and now I believe this was the first warning sign, that of course went unnoticed. Any change in bowel habits is cause for alarm but at that time I thought nothing of it and never reported it to my doctor. It's possible this was the early development of a polyp or tumor, and it wasn't until it had evolved to Stage 2 that I displayed symptoms that alarmed me enough to do something about them. I take no such liberties now. I always swore I wouldn't do this, but I go to the doctor with a pimple now. I have been rewarded for paying attention to warning signs. This page on lists signs and symptoms of colorectal cancer.

There was one big surprise left for me in July, but mostly due to my own ignorance. At a follow up appointment with Dr. A, I was advised that her office had arranged an appointment with an oncologist, who would determine if any further treatment (i.e. chemotherapy or radiation) was necessary. Huh? Didn't she tell me at the hospital that they toxicology reports from the section of my colon they removed were negative? I thought I was in the clear. Well, of course not dumb ass. I would see the oncologist regularly for quite some time.

Late in July I went to see Dr. D at the Trillium Health Centre Oncology Clinic. I've said it before, but the waiting room is where you go to find out how much worse off other people are than you. This is where you see the brave young women with colorful scarves on their heads, or young jocks in their favorite team's toque, to conceal their baldness; little old ladies, barely strong enough to walk themselves, helping their very sick husbands up out of a chair and shuffling off to their appointments; the distant, exhausted and frightened eyes of people coming out after their treatments. Somehow they looked hollowed out. Those were the worst. Where did those poor people have to go in their minds to cope with their treatments and how they were feeling? I get a lump in my throat every time I think about it.

I was examined and had some blood taken and answered a million questions that I had answered a million times before. While the appointment was another plunge on the roller coaster, the outcome was pretty positive and I started to get some solid information about my condition and was told what to expect. I had a Stage 2 tumor, an 'adenocarcenoma', that we had caught quite early. The margins of the colon specimen they removed were clear (i.e. there was just the one tumor and nothing else), and the nineteen lymph nodes they removed showed no signs of cancer. Dr. D felt I had a 90% chance of no recurrence in the next 5-10 years, meaning it looked like I was cured, but I would continue to see him every few months. I guess all bets are off after 10 years. Guess I better get cracking on that bucket list.

A short while after that I saw a radiation oncologist, specializing in radiation treatments for cancer, just to get one final opinion on whether further treatment would be required. Dr. E told me that in cases like mine, radiation was rarely required, and in fact there was some correlation between a higher recurrence rate and radiation treatment. I was in the clear! No chemo and no radiation!

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