Putting first things first, you should know that at the time of this writing (September 2011), it has been about 15 months since my treatment for colon cancer and right now all the signs point to me being cured. Yes, cancer can be cured.
So, why a blog then?
With any luck the worst part of my trip is over in terms of the physical part of the disease and treatment, but I've been finding it difficult to heal and recover mentally and emotionally. I'm out of sorts. I cry at Disney movies or listening to Pink Floyd. I vacillate between feeling sorry for myself and seriously getting on my own nerves about feeling sorry for myself. Some things that I used to enjoy have lost their appeal. And while I have every reason to be grateful and think of myself as one of the lucky ones, sometimes not so much. It's difficult to describe, but my soul hasn't settled and maybe it won't. I don't know what the new normal is just yet. This is a trip where I don't know the route or the destination, and maybe it's that feeling of lack of control that is at the root of my malaise.
On the positive side, and at least in my own mind, I am much more likely to roll with the punches of day to day life, and have become quite philosophical about many things in the larger sense. **cliche alert** I have a renewed joy for the simple pleasures of life. And in an interesting trick of the human mind, I spend a lot more time thinking and planning for the future, even though for a while it seemed like I might not have one.
It occurred to me that writing about it all might be cathartic. And what the hell, let's share it with the world, and maybe someone will commiserate, be informed, educated or even entertained. So if you're reading this and you're someone who may have asked me 'how are you feeling?' at some point in the past, well, here you're going to get the real answer. If you don't know me, maybe you're going through this yourself, or maybe you know someone else who is going through this, and I can help you understand how they are feeling. Let the wonderful doctors and nurses worry about the rest.
What I don't intend is for this blog to be any source of knowledge or expertise. It's just little old me and what I am going through.
And so well over a year later I'm going to regurgitate my whole experience mostly from memory and with the benefit of hindsight, which ought to result in a slightly less whiny and angry tone to the proceedings. But I guess we'll see about that. If I didn't have something to get off my chest I wouldn't be doing this in the first place.
A little housekeeping note - most blogs list the newest post first, but I want this to read more like chapters in a book and go oldest to newest. This requires fudging the post dates so just ignore them.
Happy reading.
The Life Bomb
But first a little background about how I got there.
It's late March 2010. Since my 40th birthday I had been disciplined about going for my annual physical, and I had one coming up in early May. For the third time since January, I noticed I had some blood on the toilet paper after having a bowel movement. I called Dr. A, my fabulous family doctor, to report the problem and she said if it happens again come in right away, otherwise let's have a look during your physical. Fine. Months later I would realize my body had given me a signal years earlier but I failed notice. That's for another post though.
The physical came and Dr. A examined me as I laid there somewhat horrified, but I'd later look back and laugh at this episode as the least flagrant violation of my dignity.
"Everything looks OK, but let's have specialist Dr. B take a look anyway. Maybe it's a hemorrhoid or fissure or something and he can give it a little freezing and away you go."
Ha.
At this point I was moderately concerned and a little anxious I guess, but pleased to get the specialist appointment scheduled for only ten days hence. Later I would learn this isn't because I am charming and handsome and good at euchre, but because I could be high risk for colorectal cancer and our medical system is set up to expedite cases like mine.
As an aside, I had my first lesson in how medical professionals are blase about their work versus the way a non-medical person might think about it. I called Dr B's office to confirm my appointment, for what I thought was a colonoscopy.
"Oh no, you're not having a colonoscopy. You're having a sigmoidoscopy. Colonoscopy examines the entire lower intestine but for a 'sig' we only go up eight inches." Ahem.
I picked up my preparation kit from Dr B's office which consisted of a bunch of paperwork and instructions on medication I was to get, in this case a little suppository to 'prepare' my bowel. Where do they get these terms? Ain't no way my bowel was prepared for what was coming.
Now, if you've never heard of or used a suppository before (I hadn't), it sounds pretty simple. They are sometimes helpful to combat constipation but in my case were to clear the place out so Dr. B could get a good look. You take this slippery pill that is about the size of a multivitamin or something, and shove it up your rectum a certain distance, then sit back and wait for the fun to start a short while later.
I set up to take my suppository the morning of my sig.
Actually, the little devils are really slippery. Combine this with my usual clumsiness, lack of experience and lack of motor skills performing a task that millions of years of evolution have taught me to avoid, and you can see trouble on the horizon. And no effing way was I asking for help.
The little bitch won't go in. My anus is tighter than Dick's hatband and I'm failing badly, but after a few attempts I do manage to get it partway in. It feels like a hot poker from a fireplace with thorns and hot sauce on it. Hmm, that doesn't seem right. Let's reread the instructions. "Insert to the length of your middle finger". Are they serious? Insert middle finger joke here.
By this point the suppository had fallen on the floor, and once I found it, it occurred to me that it might have gotten dirty, and should I wash it? Honestly. Is it OK to shove this dirty thing up my ass? I was in very unfamiliar territory here and I thought I was doing pretty well. It was on the floor after all. Does the five second rule apply? I decided to forge ahead.
The, uh, insertion was eventually successful, although followed by some muscle spasms in my lower back (don't ask), and the suppository was fast acting and thorough in a way that would require a separate blog entry to do it justice.
I was prepared. I was so clean you could eat off my ass.
I arrived for my 'sig' at the Trillium Health Centre, a wonderful hospital, anxious but with no idea I was about to step off the curb in front of a bus.
A few minutes in the waiting room. Magazines exclusively geared to women's interests, as if they are the only ones that visit doctors. It's that or, and this has just occurred to me, all the dudes are stealing the good magazines. Or maybe they're in the bathroom! Futz with my phone for a while. Geez this onscreen keyboard pisses me off. Cute nurse over there. Wow, that guy looks really sick. That lady can't weigh more than 80 pounds. And what the hell is that smell?
I am called and escorted to the examination room at my precisely scheduled time by an under-appreciated volunteer.
The examination begins without fanfare.
"Hello Mr. Clement. I'm Dr. B and we're going to do a sigmoidoscopy today to investigate the bleeding you reported. Please lower your trousers and lie face down on the examination table."
Imagine a table only big enough for your torso, with a place to kneel at one end. Then imagine being tipped head first toward the floor. That's right. Drawers down, ass in the air, and you know my cheeks were clenched.
"You'll feel something a little cold now." Understatement #1.
A medical imaging device the size of a blue ribbon zucchini with lubricant harvested from the polar ice cap of Neptune is placed against my anus, and the party starts.
My anxiousness and discomfort at this point did not escape the notice of the attending nurse, who put a gentle hand on my back and told me everything was OK. Amid all the expensive equipment, an excellent doctor, my thorough 'preparation' and with my best mental effort to deal with everything, what I needed most at that moment was a tender bit of human contact, even from a total stranger, to bring me back. Amazing. The laying on of hands. I hope they still teach that at nursing school.
Then, a surprised, "Oh! Forceps please."
Snip.
"Pull up your trousers and have a seat." This was an interesting sentence. Did some people forget to pull up their trou before taking a seat, or was this just a way to say the exam was over? In hindsight, I wish I had taken a close look at the seat of the chair.
Examination elapsed time: 90 seconds.
"You have a tumour about 4 inches up your rectum which will require surgery. I don't think you will need a colostomy bag, but I can't be certain at this point. I believe the tumour is malignant but I will wait for the toxicology report to be sure.
"We'll make a large incision from your navel to your pubic bone and remove a section of your colon.
"You'll need to take a about a month off work." Understatement #2.
He said a few other things that I can't remember.
I fumbled my way through a few questions, trying to understand that he really said I had cancer and it was serious. Cancer? Cancer. Can-cer. /ˈkænsər/
"It can be serious if it has spread", he said.
I shuffled out to the desk in the waiting area in a daze and waited while the nurse faxed some forms marked URGENT off to the surgical department at the hospital. "Sign here please. Take these forms to your family doctor. Are you alright?"
Tumour.
Cancer.
URGENT.
Fuck.
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.
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.
Countdown to surgery
There have been many times that I've had to compare my personal situation to others who were fighting any sort of battle with a medical problem, and a few minutes in any hospital or doctor's office waiting room usually gave me good reason to consider myself fortunate on balance. With this in mind I look back on that 2 1/2 weeks between being told surgery was needed and the event itself. And I would also feel grateful many times that I was made to wait just three weeks from diagnosis until surgery. We certainly hear a lot of gloomy and critical talk about our health care system in Canada, some of it justified, but I was and still am grateful to live in our wonderful country that has such a system. And, I was about to cash in big time against all the money that was put into the system on my behalf over the years. Cha-ching!
To be honest, I don't remember too much about this time except for a few milestone events. There was a lot of staring out windows, busywork around the house, and trying to make arrangements to suspend the operation of my piano business for an uncertain period of time. I guess I watched a lot of movies. But the big ball of fear was starting to recede as preparation got underway. I had a purpose, a mission, and as crazy as it sounds, I think I felt energized because something exciting was happening to me. This idea really messed with my head, and I spent many an hour wrestling with it. What the hell was wrong with me? But sometimes a cigar is just a cigar I guess. I forgave myself and moved on.
Remember Dr. A, my family doctor? I had been in her care for about 12 years by this time: I had physicals; she sent me to a specialist for knee surgery after I wiped out on my bike, and another time to have hernias repaired; I had warts on my foot; there were colds and flus and checkups for Madeline and various other minor things over the years. But now for the first time things were really serious, and as I went to see her for my pre-op physical, it occurred to me that she may have saved my life.
We had a nice discussion during the appointment. I had just had my annual physical a few weeks prior so the whole thing was really a formality, and there was a bunch of paperwork. So we talked and she was genuinely caring and compassionate toward me. I tried to imagine how many other patients she had who had problems as serious as mine or worse, and how often she had had to tap in to some part of her that allowed her to feel for them. How many times had she had to deliver the worst possible news to loved ones or patients? It must be exhausting.
When we were done I searched for the words to express my deepest gratitude but just ended up asking for a hug instead. Tears welled in my eyes when she said yes.
I also remember starting to feel pretty upbeat by this point in time. Things were happening and I was able to take action and move things forward. There were a whole bunch of people doing things for me, many of them strangers expressing their sincere best wishes. I felt their support and strength. Dr. B told me chances for a cure were 'very good'. The word 'cure' hadn't even crossed my mind up to that point. It was starting to seem that even though I had been unlucky to get the disease in the first place, I had a real shot at a relatively good outcome. It was as good as it could be under the circumstances.
Before I knew it, it was the week prior to my surgery. I was to go to the hospital on Monday, June 7 for a colonoscopy, and surgery would be the next day. Sometime that week I went for my first ever CT scan. Neat-o! It's like a great big donut on its edge that you slide into, and I guess the result is kind of 3D x-ray image, and in my case the goal was to check my entire abdomen for any other signs of cancer. I've always been a sci-fi nerd so it looked pretty cool to me, right out of the USS Enterprise or something. One funny thing about the experience is that they have to inject some kind of dye into you intravenously, and it makes you feel like you have wet yourself. There's also a kind of funny taste.
At home that weekend we really just took it easy. The Sunday would be consumed by my 'bowel preparation' for the colonoscopy, and I really don't remember, but I think we had a nice big meal on Saturday, or maybe we went out somewhere. Hopefully I had cheese covered filet mignon wrapped in peameal bacon and topped with poutine and whipping cream, followed by fudge cake, Cognac and a big fat cigar. Yeah, that's it.
This brings us to the colonscopy prep at home on Sunday, which makes my suppository story seem like a day at Disneyland. Where to begin? OK, so the facts are that for a colonoscopy, they inspect the entire length of your lower intestine with a medical imaging device, or as Billy Connolly says, "they shove a television camera up your arse". This part of your anatomy is about 5 feet long and the preparation is meant evacuate the entire passage so the doctor is looking only at tissue and not any waste or undigested food. Colonoscopy is a routine screening test for many things, and now they are recommending that anyone over age 50 get one to screen for colon cancer. In the event, your entire digestive tract from your stomach on down is evacuated. In my case, Dr. B was going to be looking for other tumours or polyps.
I've tried to describe this in cold medical terms to the best of my ability, but the reality of going through it is more like a horror movie that happens in the toilet bowl. 'Alien' with ka-ka.
My preparation would consist of drinking a large quantity of something with the jaunty but somehow inappropriate name of Colyte (actually it could be worse: a similar product is called Golythly, in what has to be the biggest un-truth in advertising ever), a 'colon lavage', about the size of a jug of windshield washer fluid, followed by a small bottle of Citromag laxative, just for good measure I guess. My wife and daughter laughed out loud when I came home from the pharmacy and plopped down this big white jug of fun on the counter. This whole stoicism thing seemed to have some kind of evil twin.
It's pretty hard to describe the experience that follows, but imagine those blast off engines on the space shuttle firing poo. For four hours. It is without question the mother of all shits. And I have to tell you, there is some indescribably nasty stuff going on in your digestive tract, that we thankfully don't have to know anything about most of the time. This video of comedian Billy Connolly describing his colonoscopy is hilarious but quite accurate (R rated - beware).
My loving, supportive and stoic family and I laughed and laughed at the absurdity of it all every time I sprinted for the bathroom. Tears of laughter were on my face even as I was on the toilet, literally holding on for dear life.
I had a good sleep and went in to the hospital for the colonoscopy in pretty good spirits but some understandable concern simply based on heading into the unknown. The lead up to the procedure went without a hitch; the signing in, the paperwork, changing into those fabulous gowns and paper slippers they give you, and waiting on a stretcher in the pre-op area where it was so cold I could almost see my breath. Looking around this area was instructive for me. It's the 'endo' area, or endoscopy, where they do a few different procedures like colononscopy and EDG, which is like a colonscopy only down your esophagus. So there were plenty of other patients that morning getting a look up the rear or down the hatch. Gee, that guy looks pretty good; I wonder if he had cancer? That lady not so much. And this little kid here is having both a colonoscopy and EDG today, the poor little guy. He was there with his teddy in his wee hospital gown and smiled shyly at me from behind his mother's skirt. I wanted to know everyone's story.
The nurses were wonderful, and I marveled at their skills of being caring and warm, but also all business at the same time.
For these types of procedures they usually do what they call a conscious sedation, which is a way of saying you're knocked out but they can rouse you out of it if need be. I had my IV all hooked up and was wheeled in to the operating room right on schedule, and looked around at all the equipment. No wonder hospitals are so expensive. I was kind of surprised to see Olympus makes a bunch of the imaging equipment but I guess it makes sense given their core expertise as a company. Dr. B was there and greeted me cheerfully and then took me through what was going to happen.
They have you lay on your left side for the procedure, with the doctor and nurse behind you, which means that all of us face the monitors that show the view from the camera that goes up your rear. Everything was turned on, and at one point Dr B laid the camera down on the stretcher behind me. I don't want to tell you what I saw, but let's just say I got a view of myself that would be impossible under normal circumstances. I managed a little chuckle as I imagined the sun shining out of there.
Dale has often told me that many surgeons, especially some of these GI guys, are sort of techno-nerdy in a way when it comes to the human body and some of the equipment they get to use. As they started the IV drip of the anesthetic, Dr. B thought it might be neat to show me my tumour before I went to sleep. I looked but I wish I hadn't.
I woke in the recovery area later and was told again to lie on my left side and pass gas, because part of the procedure is for them to kind of inflate you so they can have a look. In due course I was passing wind at a rate suitable to propel a sailboat, and was laughing again as the 'choir' of other patients did the same. I thought it might be fun to try to get a little 'call and response' action going, but thought better of it. Can you imagine being a nurse in there and listening to that all day? They don't get paid enough.
A while later Dr. B came to my bed and told me the best possible news: neither the colonoscopy nor the CT scan showed any other signs of trouble, not even any other polyps. We would be dealing only with the one tumour, and things were looking promising for a good outcome. Why couldn't I be one of those 73% of people that survive? Someone has to, right? Right?
It had been a physically and emotionally draining couple of days, but somehow I went to bed in good humour on the eve of a defining moment in my life, and to my utter surprise, I wasn't afraid.
Goodnight moon.
To be honest, I don't remember too much about this time except for a few milestone events. There was a lot of staring out windows, busywork around the house, and trying to make arrangements to suspend the operation of my piano business for an uncertain period of time. I guess I watched a lot of movies. But the big ball of fear was starting to recede as preparation got underway. I had a purpose, a mission, and as crazy as it sounds, I think I felt energized because something exciting was happening to me. This idea really messed with my head, and I spent many an hour wrestling with it. What the hell was wrong with me? But sometimes a cigar is just a cigar I guess. I forgave myself and moved on.
Remember Dr. A, my family doctor? I had been in her care for about 12 years by this time: I had physicals; she sent me to a specialist for knee surgery after I wiped out on my bike, and another time to have hernias repaired; I had warts on my foot; there were colds and flus and checkups for Madeline and various other minor things over the years. But now for the first time things were really serious, and as I went to see her for my pre-op physical, it occurred to me that she may have saved my life.
We had a nice discussion during the appointment. I had just had my annual physical a few weeks prior so the whole thing was really a formality, and there was a bunch of paperwork. So we talked and she was genuinely caring and compassionate toward me. I tried to imagine how many other patients she had who had problems as serious as mine or worse, and how often she had had to tap in to some part of her that allowed her to feel for them. How many times had she had to deliver the worst possible news to loved ones or patients? It must be exhausting.
When we were done I searched for the words to express my deepest gratitude but just ended up asking for a hug instead. Tears welled in my eyes when she said yes.
I also remember starting to feel pretty upbeat by this point in time. Things were happening and I was able to take action and move things forward. There were a whole bunch of people doing things for me, many of them strangers expressing their sincere best wishes. I felt their support and strength. Dr. B told me chances for a cure were 'very good'. The word 'cure' hadn't even crossed my mind up to that point. It was starting to seem that even though I had been unlucky to get the disease in the first place, I had a real shot at a relatively good outcome. It was as good as it could be under the circumstances.
 |
| Toshiba CT Scanner |
At home that weekend we really just took it easy. The Sunday would be consumed by my 'bowel preparation' for the colonoscopy, and I really don't remember, but I think we had a nice big meal on Saturday, or maybe we went out somewhere. Hopefully I had cheese covered filet mignon wrapped in peameal bacon and topped with poutine and whipping cream, followed by fudge cake, Cognac and a big fat cigar. Yeah, that's it.
This brings us to the colonscopy prep at home on Sunday, which makes my suppository story seem like a day at Disneyland. Where to begin? OK, so the facts are that for a colonoscopy, they inspect the entire length of your lower intestine with a medical imaging device, or as Billy Connolly says, "they shove a television camera up your arse". This part of your anatomy is about 5 feet long and the preparation is meant evacuate the entire passage so the doctor is looking only at tissue and not any waste or undigested food. Colonoscopy is a routine screening test for many things, and now they are recommending that anyone over age 50 get one to screen for colon cancer. In the event, your entire digestive tract from your stomach on down is evacuated. In my case, Dr. B was going to be looking for other tumours or polyps.
I've tried to describe this in cold medical terms to the best of my ability, but the reality of going through it is more like a horror movie that happens in the toilet bowl. 'Alien' with ka-ka.
My preparation would consist of drinking a large quantity of something with the jaunty but somehow inappropriate name of Colyte (actually it could be worse: a similar product is called Golythly, in what has to be the biggest un-truth in advertising ever), a 'colon lavage', about the size of a jug of windshield washer fluid, followed by a small bottle of Citromag laxative, just for good measure I guess. My wife and daughter laughed out loud when I came home from the pharmacy and plopped down this big white jug of fun on the counter. This whole stoicism thing seemed to have some kind of evil twin.
It's pretty hard to describe the experience that follows, but imagine those blast off engines on the space shuttle firing poo. For four hours. It is without question the mother of all shits. And I have to tell you, there is some indescribably nasty stuff going on in your digestive tract, that we thankfully don't have to know anything about most of the time. This video of comedian Billy Connolly describing his colonoscopy is hilarious but quite accurate (R rated - beware).
My loving, supportive and stoic family and I laughed and laughed at the absurdity of it all every time I sprinted for the bathroom. Tears of laughter were on my face even as I was on the toilet, literally holding on for dear life.
I had a good sleep and went in to the hospital for the colonoscopy in pretty good spirits but some understandable concern simply based on heading into the unknown. The lead up to the procedure went without a hitch; the signing in, the paperwork, changing into those fabulous gowns and paper slippers they give you, and waiting on a stretcher in the pre-op area where it was so cold I could almost see my breath. Looking around this area was instructive for me. It's the 'endo' area, or endoscopy, where they do a few different procedures like colononscopy and EDG, which is like a colonscopy only down your esophagus. So there were plenty of other patients that morning getting a look up the rear or down the hatch. Gee, that guy looks pretty good; I wonder if he had cancer? That lady not so much. And this little kid here is having both a colonoscopy and EDG today, the poor little guy. He was there with his teddy in his wee hospital gown and smiled shyly at me from behind his mother's skirt. I wanted to know everyone's story.
The nurses were wonderful, and I marveled at their skills of being caring and warm, but also all business at the same time.
For these types of procedures they usually do what they call a conscious sedation, which is a way of saying you're knocked out but they can rouse you out of it if need be. I had my IV all hooked up and was wheeled in to the operating room right on schedule, and looked around at all the equipment. No wonder hospitals are so expensive. I was kind of surprised to see Olympus makes a bunch of the imaging equipment but I guess it makes sense given their core expertise as a company. Dr. B was there and greeted me cheerfully and then took me through what was going to happen.
They have you lay on your left side for the procedure, with the doctor and nurse behind you, which means that all of us face the monitors that show the view from the camera that goes up your rear. Everything was turned on, and at one point Dr B laid the camera down on the stretcher behind me. I don't want to tell you what I saw, but let's just say I got a view of myself that would be impossible under normal circumstances. I managed a little chuckle as I imagined the sun shining out of there.
Dale has often told me that many surgeons, especially some of these GI guys, are sort of techno-nerdy in a way when it comes to the human body and some of the equipment they get to use. As they started the IV drip of the anesthetic, Dr. B thought it might be neat to show me my tumour before I went to sleep. I looked but I wish I hadn't.
I woke in the recovery area later and was told again to lie on my left side and pass gas, because part of the procedure is for them to kind of inflate you so they can have a look. In due course I was passing wind at a rate suitable to propel a sailboat, and was laughing again as the 'choir' of other patients did the same. I thought it might be fun to try to get a little 'call and response' action going, but thought better of it. Can you imagine being a nurse in there and listening to that all day? They don't get paid enough.
A while later Dr. B came to my bed and told me the best possible news: neither the colonoscopy nor the CT scan showed any other signs of trouble, not even any other polyps. We would be dealing only with the one tumour, and things were looking promising for a good outcome. Why couldn't I be one of those 73% of people that survive? Someone has to, right? Right?
It had been a physically and emotionally draining couple of days, but somehow I went to bed in good humour on the eve of a defining moment in my life, and to my utter surprise, I wasn't afraid.
Goodnight moon.
Sidebar: The Stories
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| New England Holocaust Memorial |
Reflecting on the trip now, I keep thinking about the stories I have heard from other cancer victims or their families and loved ones. Of course, I knew some of these stories before the disease struck me, but they resonate more strongly with me now. I feel a little ashamed admitting this. I should have felt more empathy when hearing any story of a debilitating or deadly illness, not just after it had afflicted me. A little older...Do you have any cancer stories of your own? If not, it won't be long before you do.
Here are just a few stories I know, but there are plenty more:
- There's my Uncle Jack on my mother's side. He died of throat cancer in 1975 at the age of 51, leaving a wife and three children. I was 12 then and this was the first time I had ever heard of cancer, and I remember my mother saying that his death was ironic because he was the fitness buff in the family with a heart 'as strong as a horse's'. Cancer does not only attack the weak.
- My friends Tania and Angela have both had scares with skin cancer as young women. Both are doing well now.
- A business associate of mine lost her father to cancer a few years ago. He was just in his 50's and it was all through his abdomen, though they believe it started in his colon. She is the eldest of four children, and her father lamented that he wouldn't live to see his daughters married. I don't know her very well, but I think she carries some regret around with her still. It isn't just the people with cancer who suffer, it's everyone close to them.
- I've never met Nadia before, but she commented in an earlier post on this blog about her battle. Her doctor missed the warning signs and she battled Stage IV colorectal cancer, the worst stage, and was told to put her affairs in order and prepare for the worst. She fought back and won and is still going strong many years later.
- My Aunt Nancy (or aunt Fancy as my wee daughter used to call her) fought two separate battles in recent years with different cancers. She is ok now.
- My wife went to nursing school with her best friend Helen. At her own wedding shower when she was just 25, Helen showed her friends some lumps on her neck. During a subsequent biopsy the doctor immediately knew this was cancer in her lymph nodes, and it was so pervasive through her body they never were able to identify where the primary cancer came from. She was dead in 5 months. Think of what a wonderful nurse and mother she would have been. She never knew she was sick, although she would complain of a little indigestion now and then. Cancer is a phantom, a wraith that stalks and kills people without them even knowing.
According to the World Health Organization, about 6 million people died of cancer in 2010. That's 6 million individual stories, and the stories of people close to those who died. That's one entire holocaust memorial every year.
Cancer is a scourge and a plague. I started off writing this blog thinking it would help me exorcise some of my own lingering feelings about my experience, and I've even been playing it for laughs because let's face it, that's the only way to cope sometimes. But now I can see I have another hope. I want to hear more stories like mine: early diagnosis; fast, effective treatment; cure.
And someday maybe we'll even know why and move on to prevention. When I got sick and started looking into colon cancer specifically, I was really astounded to learn that we don't even really know what causes it. Maybe it's red meat, maybe it's hereditary, maybe it's alcohol, maybe it's Obama. There's a fair bit of risk factor type data but as far as I know, not much that denotes a direct link.
9,000 Canadians gone last year and we don't even know why.
Going Under the Knife
When I woke from my surgery I said, "Now I'm a semi-colon!" Ba da bum bum. I got a million of 'em. Try the veal. I'll be here all week. Unless I die.
It was an early start on Tuesday, June 8, 2010, with a 6:30am check-in to the surgery unit at Trillium Mississauga. I was miserable because I hadn't eaten any solid food since the previous Saturday and we walked past the in-hospital Tim Horton's on the way to check in. The smell of the baked goods and coffee made my knees weak and my mouth water, and I wanted to stuff a dozen doughnuts right down my throat. My surgery was at 8:30 and it was a weird, sort of floaty out of body feeling watching the second hand sweep ever so slowly around the clock. Lots of people coming and going, and family members lingering at the bedsides of their loved ones. Of course, Dale brought me to the hospital, but once she got me checked in, a kiss and a long look from the big brown eyes, and she was off to race back home to take Maddy to school. Nurses hustling around. Someone answer that goddamn phone please. I was left with my own thoughts, and not even a crappy magazine; I'd have settled for Cosmo Girl at that point. I remember thinking about how much the world has changed in my lifetime, but feeling as though it was still 1965 in that waiting area. Those same floor tiles in that beige colour with the pebbly bits in them (how do they make those anyway?), and the horrible non-colour of paint on the walls. Is it green, blue or beige, or some sort of wretched combination of all three? I guess it's too expensive to give the hospital a little makeover every five years, but hopefully they had upgraded all the important things.
The anesthetist came to see me. For hygiene reasons the OR staff have to wear something to contain their hair, and many of the doctors wear what look like doo-rags. Oh great, 'Lil Wayne is my anesthetist. He had a big wad of paper - let's get these people some iPads or something - and I signed a bunch of papers absolving him of responsibility if I died. I jest, but that's really the upshot of those waivers isn't it?
I was wheeled into the OR and there were no soothing words or a calming hand on my back this time. Fuck, I was nervous.
For about the tenth time that morning I was asked for my date of birth and what procedure I was having done, all part of the redundancy checks they do at the hospital. Good, good. Can't have me getting a leg amputated or something. I don't remember much else - the big operating room lights, machines hissing and beeping, the measured tones of the doctors and nurses as they spoke. And what the hell is that smell?
Grossness alert - graphic description of surgery to follow.
Over the next couple of hours I was sliced open from my navel down about six or seven inches, my guts pulled out like a magician's scarf (this would be an important point later), and the diseased section of my colon cut out plus a few inches on either side (what they call the margins), and the remaining ends stapled together. They would also take out a bunch of lymph nodes, because cancer is known to spread through your body via the limbic system. Stuff it all back in and staple me up. Lovely.
I awoke at about noon in the recovery area in the worst pain I had ever experienced, to that point, but that was quickly taken care of by the nursing staff. Zing! Can I get this stuff in a six pack? Kidding. I would be no fan of morphine within a day or two. I think I went right back to sleep and don't remember too much more about the recovery room. There are some vague memories of getting transferred into my bed in my room in the surgery ward, and Dale says she stayed with me in my room for a couple of hours but I don't remember. She and Madeline visited that evening but I don't remember too much about that either. There was a bright spot of news on this awful day: Dale's oldest sister had called her to announce she had gotten engaged over the weekend.
At this point I was still waiting for the phone in my room to be switched on and for the fabulous six inch TV to be activated. I believe it was made in Soviet Russia from old tractor parts and vodka bottles and was coal powered. I tried reading a few of the magazines I had brought but was exhausted after a single paragraph. I noticed the quadricep in my right leg was completely numb but didn't think anything of it at the time.
I've had a few surgeries over the years, and one thing in common with them all is that the day of the surgery usually isn't too bad in terms of dealing with pain. I guess you still have a lot of anesthetic in you or something - I don't know - but the worst pain and discomfort starts the day after. I was kind of feeling that way as I settled in to my room. Gee, this isn't too bad. Thankfully, Dale's benefit plan paid for a semi-private room, and we splurged for the upgrade to a private room. King of the cancerous castle. I got acquainted with the pain pump button you use to dose yourself with morphine if you start hurting, and tried to relax.
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| IV Pump / Instrument of Satan |
The other thing connected to me was a catheter, which kind of surprised me when I first realized it was there. But if you think about it, I was in no condition to get up and go for a pee. I wouldn't have thought it possible for me to despise an inanimate object so much, but I am truly lost for words to describe my hatred for it. Aside from having this tube shoved into my John Thomas and up to my bladder, they had taped the lead to my hairy leg, to keep it from tugging I guess. This is not a good combination. Thankfully I only had it in for a couple days, by which point I was sure the tube had a covering of tree bark with vinegar as a lubricant. The only thing that was remotely amusing about the experience was the reaction of the nurses upon seeing that I was dutifully filling up the urine bag, as though I was a puppy who had peed on the newspaper for the first time. Who's a good boy? This would turn out to be the beginning of a very long trend in my recovery: genuine excitement about the most basic bodily functions. Over the next few days and weeks, every fart and tiny little turd would be reverently received like manna from heaven. I imagined my farts in little football jerseys getting hoisted onto people's shoulders while a marching band played, or turds in business suits parading down Fifth Avenue in a ticker tape parade, waving to the adoring crowds.
A complication of this very invasive surgery on my digestive system is that once the organ is manhandled (in this case my lower intestine), it basically shuts down, and getting the system started back up again is a very delicate and slow process. At that point in time, that meant I couldn't even have a drink of water, but got to suck on a tiny little sponge when my mouth was dry. In a few days I could have an ice cube!
So, with a grotesquely swollen belly with staples and a huge bandage on it, my wee sponges, chapstick, and a final 'squee!', I drifted off to sleep.
Post-surgery Party Time
'SQUEE!'
What the hell was that?
It was my first night in the hospital and I woke with a start in my darkened hospital room, disoriented, and really uncomfortable in my bed. I always sleep on my side and so I was developing a really sore lower back and bum from being in that one position on my back for so long, I guess since about 8:30 that morning. I spent the whole night tossing and turning, sitting up, laying back, and futzing with the Craftmatic Automatic Adjustable Bed.
The result of all this flopping around was a lot of bleeding from my incision, and it's probably my own fault. Twice through the night I had to have the dressing on the wound, my gowns and all the sheets on the bed replaced. There was blood everywhere and I was totally freaked out. I felt like Carrie. My all time worst pain record when waking up from the surgery the day before was quickly topped when the nurses removed the dressing from my wound. I'm not a baby about pain but I really let out a groan when they peeled it off. I guess someone figured out at some point that it's best if they don't shave you too much because you're more likely to get an infection or something, so in addition to the pain from the incision I got a bunch of hair ripped off my stomach. Ever seen a video of a man getting his chest waxed? I got that on a 12 hour old incision. Where the hell is that magic morphine button? The second time they took off the dressing, I ended up with a large pressure bandage about the size of a folded newspaper, that would stay on for two more days. Thankfully it stopped the bleeding.
My remaining dignity was obliterated the next morning as the nurse washed me.
The rest of my notes from the hospital that week are a litany of aches and pains and complaining, but I'll spare you the details. I had plenty of visitors and phone calls, and watched every single televised match of the World Cup from South Africa (the vuvuzela is relegated to the same status as my IV pump). I started slowly ingesting clear fluids - water, consomme, tea and all that - and worked my way up to Jell-O and then on to solid food over the course of a few days. And I was miserable. I wanted visitors but when they were there I wanted them gone. I was just a bitch, and Madeline later told me she and Dale couldn't wait to leave during their nightly visits. I feel really bad about this now. I'm so sorry guys. In my own mind I was Paul Courageous Cancer Fighter. In truth I was a total jerk to the people who love me. What a dick.
How do people who stay in the hospital for weeks and months avoid going crazy?
Commenting about the hospital food seems like low hanging fruit when trying to play this experience for laughs, but really it's not that bad. And if you think about it, the goal isn't really for it to taste good. It should be simple and healthy and assist you in getting back on your feet. I mean, how good can they make it in one kitchen in the basement of this huge building anyway, trucking it all around the place in elevators and all that? It's amazing it's as good as it is. Jell-O sucks though.
In the middle of the night on my second or third day I was awakened by the nurse coming in to do the hourly check of my vital signs etc. I was very anxious, grumpy and tired and let the nurse, Noelle, know it. I wanted to crawl out of my own skin.
"Many people have this type of reaction after being on morphine for a couple of days. You should be switching over to oral medication in the next day or two and you'll start feeling better," she said calmly.
"But I can't sleep! There's so much noise in the ward," I complained.
'squee!'
"You really shouldn't expect to be able to get sleep for long stretches in the hospital. Grab an hour or two whenever you can and expect a lot of interruptions."
This was kind of a startling epiphany. Reading between the lines, she told me the surgery ward of the hospital I was in was not a theraputic, healing environment. Hmm. Awkward. But I was better off after realizing it. I shouldn't expect to be up all day going about my business, and then turn in for the night and sleep until morning. Not realistic. OK let's adjust then.
She wasn't supposed to, but Noelle got me a big fat bag of Gravol and hooked it up to my IV so I could sleep for the rest of the night.
It wasn't just my friend the IV pump either, or the hourly interruption from the nurses. My room was right across the corridor from the nurses' station, where phones rang and machines beeped all day long, the nurses would convene to chew the fat, and virtually every person who came into the ward interacted with someone at the desk.
There was plenty of noise from the other patients too. I'm not the only one who reacts badly to the pain meds, and the guy in the room next to me was crying out all night long in this melodramatic voice, "Oh my god you've GOTTA help me!" I might as well have had Stanley Kowalski yelling "STELLA!" all night long.
Walking is prescribed as an important way to get the digestive system going, and I conservatively estimate that 50% of the IV poles that patients shuffled up and down the halls with had ear splitting squeaks that were so loud and awful they actually made my teeth hurt.
They would come in to bring my tray of food. They would come in to take away my tray of food. They would come in to clean the room. And I mean they really cleaned the room: top to bottom, every surface wiped down and wiped dry. Hourly check of vital signs. Come in to draw my blood for daily tests. Change the bags on my IV.
I couldn't wait to go home.
By Thursday things were looking up though. Dr. B came by first thing and removed the huge pressure bandage, and the catheter (for the rest of my life I will spit on the floor every time I say the word). Everything was looking good. I got to mostly wash myself and have a shave and was feeling kind of like a normal person. I was disconnected from the IV pole and put on oral meds, although the IV lead stayed in my hand just in case. I didn't care though, because I could move around freely and no more 'squee'!
Getting in and out of bed was pretty easy, to my surprise, and pretty soon I was striding around the ward like a champ. The ward consisted of two long hallways with a bunch of short hallways connecting them, and I started off lapping the nurses' station, then the whole ward and pretty soon out into the waiting area and the elevators. And let me tell you, I was stylin', in my XXL pajamas (for the bloated stomach), brown plaid housecoat and slippers. Damn!
I could also do simple things by myself that you normally do everyday, but that take on a whole new level of awesomeness when you're in the hospital. Like flossing and brushing my teeth. I got to take a shower on Thursday, and it felt so good I think I peed a little.
Touring the ward made me realize yet again that I should be grateful to not be sicker. Way at the end of the ward were all the brain surgery patients, with great giant bandages wrapped around their heads, and they were some pretty serious looking cases. In some rooms, I would see a nurse putting on what can only be described as a low level haz-mat suit, and then going in to 'assist' a patient. The odor that followed is something I hope you never have to experience. And I would always see lots of teary faces.
Doing my laps was a great reliever of stress and my lower back pain, and I would keep on walking and walking for many months to come as part of my healing.
My sleep was restless and patchy but I didn't care. Wake up after an hour of sleep? Fine, I would watch TV or whatever until I was tired again, then doze for another hour. I could see how staying sane in the hospital had a lot to do with how you managed your time.
What the hell was that?
It was my first night in the hospital and I woke with a start in my darkened hospital room, disoriented, and really uncomfortable in my bed. I always sleep on my side and so I was developing a really sore lower back and bum from being in that one position on my back for so long, I guess since about 8:30 that morning. I spent the whole night tossing and turning, sitting up, laying back, and futzing with the Craftmatic Automatic Adjustable Bed.
The result of all this flopping around was a lot of bleeding from my incision, and it's probably my own fault. Twice through the night I had to have the dressing on the wound, my gowns and all the sheets on the bed replaced. There was blood everywhere and I was totally freaked out. I felt like Carrie. My all time worst pain record when waking up from the surgery the day before was quickly topped when the nurses removed the dressing from my wound. I'm not a baby about pain but I really let out a groan when they peeled it off. I guess someone figured out at some point that it's best if they don't shave you too much because you're more likely to get an infection or something, so in addition to the pain from the incision I got a bunch of hair ripped off my stomach. Ever seen a video of a man getting his chest waxed? I got that on a 12 hour old incision. Where the hell is that magic morphine button? The second time they took off the dressing, I ended up with a large pressure bandage about the size of a folded newspaper, that would stay on for two more days. Thankfully it stopped the bleeding.
My remaining dignity was obliterated the next morning as the nurse washed me.
How do people who stay in the hospital for weeks and months avoid going crazy?
Commenting about the hospital food seems like low hanging fruit when trying to play this experience for laughs, but really it's not that bad. And if you think about it, the goal isn't really for it to taste good. It should be simple and healthy and assist you in getting back on your feet. I mean, how good can they make it in one kitchen in the basement of this huge building anyway, trucking it all around the place in elevators and all that? It's amazing it's as good as it is. Jell-O sucks though.
In the middle of the night on my second or third day I was awakened by the nurse coming in to do the hourly check of my vital signs etc. I was very anxious, grumpy and tired and let the nurse, Noelle, know it. I wanted to crawl out of my own skin.
"Many people have this type of reaction after being on morphine for a couple of days. You should be switching over to oral medication in the next day or two and you'll start feeling better," she said calmly.
"But I can't sleep! There's so much noise in the ward," I complained.
'squee!'
"You really shouldn't expect to be able to get sleep for long stretches in the hospital. Grab an hour or two whenever you can and expect a lot of interruptions."
This was kind of a startling epiphany. Reading between the lines, she told me the surgery ward of the hospital I was in was not a theraputic, healing environment. Hmm. Awkward. But I was better off after realizing it. I shouldn't expect to be up all day going about my business, and then turn in for the night and sleep until morning. Not realistic. OK let's adjust then.
She wasn't supposed to, but Noelle got me a big fat bag of Gravol and hooked it up to my IV so I could sleep for the rest of the night.
It wasn't just my friend the IV pump either, or the hourly interruption from the nurses. My room was right across the corridor from the nurses' station, where phones rang and machines beeped all day long, the nurses would convene to chew the fat, and virtually every person who came into the ward interacted with someone at the desk.
There was plenty of noise from the other patients too. I'm not the only one who reacts badly to the pain meds, and the guy in the room next to me was crying out all night long in this melodramatic voice, "Oh my god you've GOTTA help me!" I might as well have had Stanley Kowalski yelling "STELLA!" all night long.
Walking is prescribed as an important way to get the digestive system going, and I conservatively estimate that 50% of the IV poles that patients shuffled up and down the halls with had ear splitting squeaks that were so loud and awful they actually made my teeth hurt.
They would come in to bring my tray of food. They would come in to take away my tray of food. They would come in to clean the room. And I mean they really cleaned the room: top to bottom, every surface wiped down and wiped dry. Hourly check of vital signs. Come in to draw my blood for daily tests. Change the bags on my IV.
I couldn't wait to go home.
By Thursday things were looking up though. Dr. B came by first thing and removed the huge pressure bandage, and the catheter (for the rest of my life I will spit on the floor every time I say the word). Everything was looking good. I got to mostly wash myself and have a shave and was feeling kind of like a normal person. I was disconnected from the IV pole and put on oral meds, although the IV lead stayed in my hand just in case. I didn't care though, because I could move around freely and no more 'squee'!
Getting in and out of bed was pretty easy, to my surprise, and pretty soon I was striding around the ward like a champ. The ward consisted of two long hallways with a bunch of short hallways connecting them, and I started off lapping the nurses' station, then the whole ward and pretty soon out into the waiting area and the elevators. And let me tell you, I was stylin', in my XXL pajamas (for the bloated stomach), brown plaid housecoat and slippers. Damn!
I could also do simple things by myself that you normally do everyday, but that take on a whole new level of awesomeness when you're in the hospital. Like flossing and brushing my teeth. I got to take a shower on Thursday, and it felt so good I think I peed a little.
Touring the ward made me realize yet again that I should be grateful to not be sicker. Way at the end of the ward were all the brain surgery patients, with great giant bandages wrapped around their heads, and they were some pretty serious looking cases. In some rooms, I would see a nurse putting on what can only be described as a low level haz-mat suit, and then going in to 'assist' a patient. The odor that followed is something I hope you never have to experience. And I would always see lots of teary faces.
Doing my laps was a great reliever of stress and my lower back pain, and I would keep on walking and walking for many months to come as part of my healing.
My sleep was restless and patchy but I didn't care. Wake up after an hour of sleep? Fine, I would watch TV or whatever until I was tired again, then doze for another hour. I could see how staying sane in the hospital had a lot to do with how you managed your time.
A quick one: Alarms about Alarms
My last post discussed the din in the surgery ward from all the alarms going off all the time, and how nurses began to ignore them.
Here's a piece from the Sept 28, 2011 Toronto Star on the very topic:
Alarms sound about medical alarms
Here's a piece from the Sept 28, 2011 Toronto Star on the very topic:
Alarms sound about medical alarms
The Best Day Ever
Wow. What a day, and possibly the best one of my life.
Dr. B came in and removed my bandage, the last one I would have.
A short while later Dr. A, my GP, arrived to tell me that the toxicology reports for the specimens they removed during surgery had all come back negative! No more cancer in the colon and it hadn't spread out into the lymph nodes either. The news literally could not be better. She was nearly as excited as I was when she told me. I guess sometimes the doctors get to deliver some good news too. I almost couldn't believe the words that were coming out of her mouth, and in that way, it didn't feel that different to when I was told I had cancer in the first place. Weird.
Was I cured?
I even had a small bowel movement. Look at me and my bad self! But Dr. A explained that it was more important at that point that I be passing gas, which would indicate all the passages were clear.
OK, so I've been putting this off but we can't avoid the discussion any longer. With respect to my personal journey and healing, the elephant in the room is poo. I will remember it as my year of poo. I am so tired of it, but to have you really understand what it was like, and I'm sure what it's like for so many others who've made this trip, I have to talk about it. And man, there was a lot of it, and I'm going to be talking about it a lot more. So I want to help you, gentle reader, get accustomed to the topic and get over any shock or even 'the giggle factor' when reading about it. As I public service, I humbly provide a compendium of the many names I used for my little friends.
Shit, foof, chocolate hostage, Mr. Hanky, turtle head, corn eyed brown trout, you little bitch, shizzle, Tom Cruise missile, crap, ka-ka, toilet twinkie, junk, mud bunny, bootycakes, colon cobra, ass monkey, root beer float, product of Uranus, dung, monkey tail, Bob Dylan, ass flakes, staff meeting, puddin', brown bomb, marbles, guano, merde, crapdillyicious, bun fudge, baby boy, bum brownie, floater, asstronaut, Michael Phelps, tinky winky, feces, ass apple, free cable, drop the kids at the pool, little bo poop, Agent Brown, the fifth Beatle, lawn sausage, butt candy, ass rocket.
And boy the first one after the surgery was difficult. As you get on the clear fluids and then eventually the solid food, it's a real shock to the system, and there's all kinds of bloating and cramping and gurgling. It's gross. But I'll tell you, it's really exciting when it starts happening because you have to take every tiny little victory to heart to keep your spirits up during your recovery.
I had had a bunch of false alarms, but finally on the Saturday I could tell something, um, important was going to happen. I rushed to the bathroom and sat down, and I strained like you wouldn't believe; red in the face, veins popping out of my neck, and I was sure I must be passing a baseball. I broke into a sweat, my vision failed, there was a sound in my ears like waves at the beach and I thought I was about to pass out. Plink. It was about the size of a pea, and it began to dawn on me that I was in for a long, rough ride.
Despite all the good news, the Dr.'s were concerned about my hemoglobin levels. They were 135 pre-surgery (normal), about 105 post surgery and just 85 now. In hindsight, I guess I had lost a lot of blood when my incision was bleeding on that first night. That meant I would need some iron medication to help get the levels back up, but I couldn't start taking them for a while because they tend to constipate you, which is not what we wanted at all.
I had a fever too, although it never got high enough to raise concerns of an infection.
That evening, Dale, Madeline and I toasted to my good health with cranberry juice; it would be many weeks before I could or even wanted to drink any booze.
Things were a little rocky overnight and through the day on Saturday but nothing to be concerned about. After one trip to the bathroom I emerged victorious after passing gas and a cheer arose from Maddy and Dale; that would be the first and last time they would ever cheer my flatulence. It was a beautiful moment.
I had slept well overnight and made my rounds through the ward with a real spring in my step. I was feeling great. I bet I walked around there a hundred times that day. I mean, I was really bloated from eating the solid food again (it had been 7 days since I ate any real food), and I was forcing the stuff down, but I didn't care. I was determined to show enough improvement to be sent home the next day. I pleaded with Dr. B to come back on Sunday to check on me, so he agreed to squeeze me in between his pedicure and caviar tasting at the club. (I kid).
It was a rough night, with lots of trips to the bathroom, but it would turn out to be nothing compared with what was to come.
Sunday morning arrived and Dr. B came by first thing to release me. I got a few instructions from the nurse, signed a bunch of papers, and was wheeled downstairs piled high with all my junk from my stay. Dale was there to greet me at the pickup door and tears filled my eyes as we drove off and I looked back at the hospital.
I choked out, "I hope I never have to go back there again", and turned away from Dale as I cried halfway home.
I was home by 10:30am.
Six days in the hospital. Probably cured. Not bad.
I was a cancer slaying bad-ass.
One step forward...
Dale is a very light sleeper and while she swore it didn't bother her, me getting up all the time, at some point I decided to set up 24/7 on the couch so I could get up and go as needed. This had the added benefit of being able to turn on the TV if I couldn't sleep. I had also extorted a new iPad out of Dale as a welcome home present so I was awake goofing around with it all the time. Shiny.
Then things got nasty.
After nearly a week at home doing my best to get my recovery going in earnest, I had a fairly alarming episode with a lot, and I mean a lot, of blood in the toilet. This wasn't like when I was first showing symptoms, this was bright red, fresh blood. On reflection I could think back to the Tuesday after I got home and remember that I hadn't been feeling too well since then; feverish especially. My surgeon Dr. B was on vacation that day and so his office recommended I go to the Urgent Care Centre at the hospital. Dale raced home to get me - no way could I drive myself - and we headed down there. It's about a thirty minute drive right across town when the traffic is heavy, and I did my best to slam my butt shut, crossed fingers over every little bump. Dale was like Mario Andretti, trying to avoid every sewer cover.
As luck would have it, there had been a fire alarm at the hospital and they weren't letting anyone in to the building, so for a few minutes we sat on the sidewalk in the summer heat until one of the senior firemen got a look at me and let us in. I was taken in quickly and the bleeding intensified quite a bit. I was getting really concerned and emotional; I mean, my nerves were pretty much shot by this point as sleep had been hard to come by, I was still on all kinds of meds, and I was bleeding profusely out my butt. The ER doctor took one look in the toilet bowl and there weren't any further questions after that.
Well, I guess this explains the low hemoglobin levels I was showing when I was in hospital the first time.
The hospital staff contacted Emergency at the Trillium Hospital where I'd had my surgery and we rushed over and got seen nearly right away. On the one hand I was glad to be seen quickly and get the royal treatment, but on the other hand I could see how concerned all the nurses and doctors were about my present condition, and everyone was really kind of hustling around. This was not a soothing scenario.
It was well into the evening now and poor Dale hadn't even had lunch, so she went off to get something from the Tim's in the hospital, and brought it back to my stall to torment me with the smell, not that I had an appetite. Eventually she had to leave to get Maddy and look after things at home. Despite being concerned for my own well being at this point, I was also feeling really guilty. I had become a burden. Of course, hardly anyone in Dale's position would ever say that it was true but it didn't stop me from feeling that way. I imagined how people who are really sick, and depend on their loved ones for months and years, must feel.
So once again I was left alone with my thoughts and a bunch of machines. And I swear to you, it was the same guy from my hospital stay a few stalls over from me in the Emerg. "Oh my God YOU'VE GOTTA HELP ME!" I wondered if holding a pillow over his face would be 'helpful'. I was a little cranky. There was also a hilarious conversation one of the demented patients had with his shoes.
Did you ever see a newspaper story about hospitals being over capacity and people spending several days on a stretcher in the corridor? I was going on six hours and I don't think I had ever been so uncomfortable, no matter how I laid or adjusted the bed. And I couldn't get a pillow. None. They don't have any in the Emergency room, and I got a bunch of mumbling and shuffling of feet when I asked why. I ended up trying to make one out of sheets, hospital gowns, toilet paper or paper towels. MacGyver gets cancer.
At some point I was rushed in for a CT scan and wheeled back to Emerg to wait for the on call surgeon. I was really afraid at this point that another surgery would be required and I could hardly bear the thought of it, and with a great effort I had to remind myself that this was hopefully just a little setback, and I might be cured of the cancer. Thankfully surgery wasn't to be. The CT showed some fluid and bubbles around the staples where they had rejoined my intestine, which had either been there since the surgery or maybe from the bleed I had that first night, or from some other source. We never did know for sure. The risk of getting an infection was very high so I was put on an IV for fluids and antibiotics, and was admitted to the hospital. After 9 hours on an emergency room stretcher with no pillow, I was finally brought to my room at 2:30am, exhausted but unable to sleep.
Geez, serious bleeding out my arse, back in hospital, hooked up to machines, more meds and rushing to the toilet every fifteen minutes. What else would go wrong?
'squee!'
What Fresh Hell Is This?
For the first few days I was placed in the fabulous new wing of the Trillium hospital because the surgery ward was full. I was actually put in the orthopedic ward because there was no where else for me to go. This was like a spa retreat when compared to the old ward, with nice floor to ceiling windows running the whole length of the room, and a very soothing, calm environment. No noisy nurses' station right outside my room; the new design placed each nurse at their own little alcove in the corridor, where they could do their charting and other admin work in peace and not get sucked into a chinwag. No overhead pages or audible alarms from the patient call buttons; each nurse had a their own cellphone type of thing that was used in place of a PA. The whole design of the place just seemed brighter, lighter and airier and was generally a pleasant place to be. Wow, they have come a long way in hospital design.
On Saturday I had a nice visit with Dale and Maddy; unfortunately we were getting the hang of it. Disgustingly, I had to report all of my bowel movements to the nurse on duty, who had to check them for 'trends'. I was unable to eat or drink anything in case I took a turn for the worse and they changed their mind about doing another surgery.
By Sunday, Father's Day, I had convinced the nurse to contact the on-call physician, who decided that the chance of needing surgery had passed and I could go back on solid food, a little wiser this time and hoping to avoid all that bloating I had had before. But I would stay on some really hard core antibiotics because any feces that escaped my colon into my bloodstream could make me very sick or even kill me. This was serious shit, if you'll pardon the pun. These particular antibiotics were so powerful that they killed off not only unwanted, harmful bacteria in my digestive tract, but basically killed all bacteria, making my resumption of a normal diet that much more, um, unpleasant.
I had gone from being thrilled over little farts to checking to see if the blood I was passing had started to clot. Really having fun now. And if I can tell you one thing dear reader, it's this: Never, ever take your daily normal morning constitutional for granted again. It is a precious gift, and I am most serious.
We had a nice Father's Day party with the family, and later my brother Greg came and spent a few hours watching golf on TV and drinking apple juices with me. In that way of immediate family and especially brothers, we barely spoke the whole time but it was a great comfort to me having him there. Dale and Maddy, and others, would come and fuss over me and make small talk, ask how I was feeling, bring flowers, and all that, which is great of course. Greg and I would just hang, and I needed that. Thanks bro.
Monday marked the first visit from Dr. B, my surgeon, after he returned from vacation and he seemed generally sympathetic that I was back in the hospital. He came and went very quickly but examined me and said that everything was more or less OK but that I would need to remain in the hospital for a few more days at least. Later in the day I would be transferred to the old surgery ward, and into the same room I was in during my first stay. I was not feeling sentimental about this in any way. Monday was also the day I was introduced to my new and life long friend, Metamucil.
On Monday I also made the first mention in my notes of something that would soon overshadow everything else I had experienced up to that point. My diagnosis, the lead up to the surgery and the event itself would seem like a walk in the park by comparison.
I had been feeling quite a few aches and pains all the time since I woke from surgery but I thought these things could be explained by spending so much time in bed. During that second hospital stay I began having really severe pain in my arms and other places on my upper body, along with a loss of sensation in those areas. It was bizarre and frightening, and I mean really painful, like 8 out of 10 pain, where 10 is passing out. Through barely suppressed tears I was pleading with the nurses to get me some pain medication but I wasn't allowed any lest it interfere with my digestion, so it was my old pal Gravol to the rescue again. I tried Advil and a bunch of other non prescription things but nothing helped. The pain would get particularly bad at night when I was laying down, and was so intense that I lack the ability to describe it to you. And the best part? No one could explain why it was happening, or in some cases would not take me seriously. One night nurse, Nurse Smegma, basically ignored my pleas and didn't document my complaints or report them to my doctor.
This experience marked not only a turning point in my recovery, but also in the esteem in which I held the doctors, nurses and the hospital and in a way the current state of our medical system. This will take a fair bit of explaining and is probably best done by compressing the timeline I've been using to tell you my story so far.
I'm going to complain now, but here's what I want you to remember when you read this: I was spared having to undergo chemotherapy and radiation treatment. I didn't even get the worst of it. Right now there are dozens of people going through it or something worse at the hospital near where you live.
After the sixth day, I was again discharged from the hospital, but this time I had no spring in my step or swagger. I didn't want to be in the hospital anymore, but my shining optimism had vanished.
The rest of June, July and most of August is a hazy blur of time, with night not really seeming different from day. The couch, the TV, fitful naps, lack of energy from blood loss, hourly checks of my temperature to check for fever, pills, scrambling to make it to the toilet in time, documenting every little fart and bowel movement, and the pain. The pain that defied explanation and attempts to mask it, and would eventually only be subdued by a giant ice pack.
Only one night stands out, and would be the absolute lowest point of my cancer battle and my life for that matter.
It was Canada Day 2010. Dale and Madeline had left town to spend the weekend at a cottage with some friends, but I wasn't feeling well enough to go. They both needed a break so I told them to go and have a good time, and that I would be fine. I wouldn't.
That night I was set upon by pain I could never have imagined before, and I literally spent the entire night in agony rolling around on the floor of my living room (this was before the big ice pack breakthrough). I think I slept for twenty minutes. With regret, in the morning I waited as long as I could and called Dale to come home and rescue me, which she did of course. And wouldn't you know it, that night I slept for ten hours, a feat I have not accomplished since. They came home for nothing.
I got in to see Dr. A early the next week and she was at a loss to explain the pain. At one point she described the pain as 'unpleasant', then put a gentle hand on my arm and asked me if it all wasn't psychosomatic, you know, in my mind? Count to ten Paul. I was barely able to contain myself and images of Tasering her flashed through my mind. Instead I hit her with a blast of ThunderVision and told her no, the pain was real. She referred me to Dr. C, a neurologist with a 7 week waiting list.
In the meantime I was going out of my mind at home, dealing not only with all this pain but the normal recovery from the surgery, and the complication I had with the bleeding, which had continued unabated. Did I mention I wasn't having any fun at all? You know those stories you hear about people suffering from serious illnesses that are always positive and smiling and all that? I wasn't one of them.
Movies were my best friend during this period, and I watched them all day long on cable. Around this time a film called My Sister's Keeper came on The Movie Network. It tells the story of a teenage girl with cancer, and her younger sister, who was conceived by their parents in the hope of providing donor material for the ill sister. The young one then sues the parents for 'medical emancipation', while the sick one declines and dies. Watching this was not a good idea for me at this time, as you can imagine, and I was bawling like a pre-teen girl at a Justin Beiber concert. I stuck to comedies and action flicks after that.
I wasn't getting anywhere with the doctors in terms of dealing with the pain in my upper body, and so I started to do my own sleuthing. I was going over every single detail of the experience since I was first diagnosed, and when reviewing the info sheets from the pharmacy that I got with some oral meds I was taking, I stumbled across this little gem regarding one of the antibiotics (Cirprofloxacin) I was on (the italics are mine):
Ciprofloxacin may rarely cause serious nerve problems that may be reversible if identified and treated early. Seek immediate medical attention if you develop any of the following symptoms: pain/numbness/tingling/weakness in any part of the body, changes in how you sense touch/pain/temperature/body position/vibration.
But that's what I did! I sought immediate medical attention, but not one of the six nurses, four doctors or the hospital pharmacist asked themselves if I might be having a side effect reaction to the medication I was on.
Dr. C saw me much sooner than 7 weeks after all and arranged an MRI on my neck. His theory was that I got some nerve damage in my neck during the surgery when I was intubated. If you don't know, whenever you have a general anasthetic they tilt your head way back and put a tube down your throat in order to keep you airways open. The MRI did show some degenerative disc disease and herniation of some discs, and it was possible that the intubation had aggravated these areas. He also mentioned that he didn't think that any of it was related to 'toxicity' (i.e. my medications) or other cancers. Hmm. As it turns out these pain and numbness problems are also common symptoms of spinal cancer. What in the name of little green apples? Can you believe it never occurred to me that it could be another cancer?
So maybe it was medication. There is quite a lot of evidence suggesting that, while rare, adverse reaction to fluoroquinolone antibiotics (of which Ciprofloxacin is one) are prevalent and well known. Or maybe it was a preexisting condition in my neck that was aggravated by the surgery that caused some nerve damage.
But here's the problem: None of the timelines add up.
If intubation on June 8 aggravated my neck problems, why did I not have any severe symptoms of the pain in my arms until about ten days later (except for the numbness in my right leg immediately after surgery)? Did I further aggravate the problem when spending nine hours on an ER stretcher? Did I have weeks of severe pain, loss of function in my right arm and a year of physiotherapy for want of a pillow?
It also seems like it couldn't have been the Ciprofloxacin, although I remain skeptical. As it turned out, I had only taken the Cipro orally after I was discharged from the hospital for the second time, but the pain symptoms began during my second hospital stay. However, I was on a series of very powerful antibiotics while in hospital that also list similar possible side effects. It's my belief that no one can know how this cocktail of drugs could react on any one person, and when things go wrong, no one knows what to do. Later, you'll see a separate post detailing all the medication I was given during this period, and it is frankly staggering. Was I poisoned by a combination of medicines, with no one person being aware of everything I was being given?
So where did that leave me? With a bunch of maybes, no one taking responsibility, and probably no one learning anything. No doubt, the hospitals and doctors will go on prescribing huge quantities of medication based on 'protocols' and no one will look at the patient as a person. My calls to Health Canada to report my possible severe reaction to these medications went unreturned.
After a few weeks, I don't even know when exactly, the pain dissipated, and a full year of physio restored the full range of motion and strength to my right arm and shoulder. However the numbness remains in my right leg, right forearm, left thumb and elbow and parts of my ribcage. As of September 2011, Dr. C says it might improve a little more but probably not. It's my new normal.
It's very frustrating and some anger and bitterness remain with me to this day.
Sidebar: Why I Gave Up Eating Meat
That left me in a weird state of mind when I was far enough along in my recovery to start thinking about what things I ought to change in my life to try to prevent the cancer from recurring. There were some obvious things with respect to getting more exercise - we probably can all do better there can't we guv'na? - and staying diligent about medical checkups and so on. That left diet.
As I began to examine the risk factors for colon cancer, I started seeing meat, and especially red meat, being mentioned everywhere. Alcohol is also considered a risk factor. I might drink slightly more than the average person - I love a glass of wine with dinner every day, and maybe another in the evening - but nothing too out of control. And besides, you also see plenty of data suggesting a daily drink or two, especially red wine, actually has health benefits. Conclusion: giving up booze was not on the table. Screw the facts.
Years earlier, Dale and I had gone on the Atkins Diet and got some pretty good results with weight loss, but after a while I didn't want to stay on the diet and felt that drastically reducing the carb intake didn't seem right. And I really missed bread and fruit. (It's a common misconception that the Atkins Diet eliminates carbs completely - that would kill you.) So I slowly moved back to a more balanced diet, but Dale has stuck to Atkins pretty rigorously.
With some reservation I examined the idea of giving up meat altogether, and the evidence started becoming difficult to ignore. The rest of this will sound preachy, but I only mean it to explain why I made the decisions I did.
There really are three main categories of reasons that you would go vegetarian or vegan. (Vegan is someone who avoids all animal products including dairy. A vegetarian or lacto-ovo vegetarian might not eat animal flesh but still consume eggs, cheese or milk). Those reasons are moral, environmental, and for personal health. It's impossible to cover this topic properly in a blog post, but here are the highlights in my opinion.
The moral part of the argument is pretty obvious I guess, but forget about all those PETA antics. Just think of those big brown cow eyes as you tuck into your steak. But seriously, some of the conditions in which we are putting these animals - our food - are really horrific, cruel and unhealthy, for us and them. I watched the documentary Food Inc and afterwards didn't like the look of those great big chicken breasts they sell at CostCo. A great deal of our food comes from what are really huge food factories, and the animals are often deformed, genetically manipulated, pumped full of growth hormones and antibiotics, and sometimes insane or mentally retarded due to these conditions. There's a particularly disturbing story of a Fox TV station in Florida suppressing a story, and firing reporters, about some nasty business regarding milk additives.
We are told everything is OK though. Remember those cigarette ads from the '50's where "doctors" would recommend cigarettes? Do you think the anchors are going to come on CNN and tell you the products their sponsors are selling are killing you? I really believe that someday many of the major food companies will be vilified the way tobacco companies are today, and we'll ask ourselves how we could have been so stupid.
The environmental argument is compelling also, but as with the whole global warming debate, solid evidence that isn't vigorously attacked and discredited by entrenched interests is hard to come by. In the end though, no matter how you slice it, raising animals for food doesn't make sense when you look at the numbers.
- Animals consume more food energy than they produce. A cow or pig raised for meat will consume far more calories in its life than it will provide those of us who eat it later. Not to mention the extra resources required to house and transport the livestock versus crops.
- Per calorie of food energy, way more water is consumed raising livestock than crops. It takes less water to produce the food a vegan needs for a year than a meat eater needs for a month. Many experts believe the next major war will be fought over water.
- Remember the E. Coli outbreak in Walkerton, Ontario that killed those people? The watershed was contaminated by runoff from huge pig farms. Yes, there was incompetence in the management of the watershed and someone went to jail for it, but it's a mistake to ignore the source. Shouldn't we focus on eliminating the source of toxins rather than figuring out how to deal with them afterwards?
- Raising livestock is dirty. There's a pig farm in Utah that produces more waste in a year than the entire city of Los Angeles, and it's just one of many of its size.
As far as health goes, my eyes were really opened by a book called The China Study. I had read lots of things in the past championing vegetarianism, but here was something with solid scientific evidence, and lots of it. Here were studies conducted in proper scientific methods over many years, providing convincing evidence of just how harmful meat is to us. In one element of the study, researchers were literally able to turn cancer on and off by raising and lowering protein consumption in mice. Other data suggest vegetarians have less heart disease (the number one killer), hypertension, and type 2 diabetes.
Cancer is described as a 'disease of affluence', prevalent in developed countries where meat consumption is higher. Vegetarianism isn't just for Californians or thumb sucking lefties anymore. It's a sensible and logical path.
So in the end, if I gain a 1% advantage to avoid a recurrence, I'll take it, especially when combined with all these other facts.
If any of this makes sense to you, I recommend The China Study and Becoming Vegetarian as further reading.
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 estimatingwalking 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 cancer.org 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!
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
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 cancer.org 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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