Art is long, and Time is fleeting,

And our hearts, Though stout and brave.

Still, like muffled drums, are beating

Funeral marches to the grave.

 

Longfellow (A Psalm of Life, 1839)

 

November, 2014: Waiting

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I feel so good these days that I sometimes need to be reminded that I'm actually “experiencing” a major illness ("suffering from" an illness doesn't seem to be accurate, although I know that my choice of words may change when I enter the chemotherapy stage in earnest). The local Cancer Centre appears to be a well-funded, well-organized one that has been sending me DVD's and brochures, making phone calls, etc., and I feel like a bit of an imposter and that I'm not really deserving of all this attention and support since I'm not really sick. As of now, the only time I'm reminded of it is when I see myself in the mirror without my shirt on, and it's not just because of the stitches (and the occasional blood stain). The abdominal muscles that hold everything in along the right side of my abdomen were "pulled apart" so to speak by the surgeon when he had to remove the abscess and its associated tissues from my stomach. Furthermore, the abscess had infiltrated the muscles, and so the muscles remaining there no longer have the tone and strength to hold everything in, and so I'm going to have a bulge there from now on and a general "lopsided" look. Thankfully, I'm long past the age where I expect to ever walk around in public shirtless, so it's a small matter.

 

Once you let doctors begin to look around inside you, they'll find all sorts of imperfections, so they also tell me that I have a growth in my thyroid gland that's almost 5 cm in diameter. To put that into perspective, that's larger than the size of each of the two lobes of a typical thyroid gland itself, even though, try as I might, I can't see any obvious abnormalities in my neck (other than all that flab that hangs down from my chin, but that's another story).

 

I'm not sure just what I'm supposed to be feeling about all of this. To be honest, I feel a sense of excitement and curiosity more than anything else. I definitely feel as though I have entered Susan Sontag’s “night side of life” and, as it turns out, I have the illness that she focused on in the 1970’s as worthy of further analysis. Furthermore, in less than six months, I’ve moved from one of her two examples — a major infectious disease — to the other example — cancer. And not just any cancer, but the one that claims the third most lives of all the other types. That’s quite an achievement, to be struck by two metaphorical illnesses and so I should be recording my thoughts and reflections during this time.

 

Also, I've never had to navigate the health care system before, and I find that part of it quite interesting. Being lucky enough to be born in Canada, I haven’t had to worry about co-pays and deductibles while navigating the financial aspects of health insurance, so I can focus solely on the decisions being made for my care. Of course, my wife has been actively involved in every step of my care and so I'm aware that I'm probably having a better experience than the average person will have. Still, I'm impressed with the system and the people I've had to deal with so far and, now that I'm experiencing it first hand, I can appreciate the work that went into building that capacity at the local level over the past 20 years. The fact that I find myself using phrases such as “building capacity” even though I’m not standing in front of a class of health students is telling. However, my wife’s father died of lung cancer over 20 years ago (before my wife and I were married) and I remember those days when people living in our area had to drive to London or Hamilton for assessment and/or treatment, and so I’m grateful to everyone who played a role, financial or otherwise, in ensuring that no one living in our area has to do that anymore.

​

My Introduction to the Chemotherapy Suite

 

When I arrived at the Cancer Centre for the first chemo session, I could hear music playing from speakers somewhere. The song "Eleanor" by The Turtles was playing and, since I've always liked that song, I appreciated the effort someone had put into the resulting ambiance. I had to wait in line at the reception counter and, while I was waiting, "Come Dancing", another song I like, came on. I thought that it was thoughtful of the person responsible to play music from the 60s and 70s, since so many patients would have been listening to this music when they were growing up. Anyway, I could see that everyone in the reception area kept looking around seeming rather confused about something, but I couldn't tell what they were confused about. It was a hospital and, as such, it was the scene of countless little daily dramas, and I assumed that one had taken place just before I’d arrived. When it was my turn and I walked up to the window, the receptionist began looking around. "Sorry" she said when she realized that I was waiting for her to take my information. "I'm just trying to figure out where that's from."

"Where what's from?" I asked.

"That song" she answered.

"It's from The Kinks", I answered, but she just looked at me funny and asked for my health insurance card. After she'd registered me, I took the stairs up to the chemotherapy room, which was at the far end of the hall one floor up, so I walked through the whole Cancer Centre, enjoying the music while I walked. When my wife and I had arrived at the parking lot, she had gone ahead of me through a different entrance to get some things from the hospital pharmacy and so she was waiting near the entrance to the chemo suites for me for arrive. When I approached her, she looked at me with a funny expression on her face and said "What are you doing?"

 

“What do you mean?”

 

"Why are you playing music?"

 

"I’m not playing music, it’s coming from a sound system somewhere" I answered.

​

"Actually, it's coming from your pants" she said. I took my iPhone from my pocket and, sure enough, the music turned out to be coming from my iPhone. I’d accidentally pressed the iTunes button when I got out of the van and put my phone in my pocket. It had been so noisy outside due to the ongoing construction of the parking garage that I hadn't realized it and didn't hear anything until I entered the building. Of course, I should have realized that something was wrong when all I heard was loud, old pop music that I happened to like. That was rather embarrassing: my introduction to everyone in the chemotherapy suite and I was being one of those inconsiderate people who expect everyone to listen to their choice of music. 

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Chemotherapy: Playing the Odds

​

Now that I'm home again, and seem to be healing from the surgery according to schedule, I'm just waiting to see what's next. I had my first screening colonoscopy back in 2008 and, according to the surgeon, my tumour has been growing for years, so it seems to have been missed back at that time. Supposedly, right-side tumours are more difficult to detect by colonoscopy and even my surgeon, expecting to find the tumour in that region, had great difficult seeing it. The next screening colonoscopy was scheduled for 2018 so the abscess turned out to be a stroke of luck, as we probably would not have found the tumour for a few more years otherwise, unless the painful abscess returned to my life, as it did.

 

Like many people in my situation, I find myself dancing around the question of the odds: the odds of dying within the next 5 years, within the next 3 years, the odds of responding well to the treatment, the odds that I’ll have a miraculous recovery, the odds that, one day, I’ll find myself sitting in that corner chair I always sit in during my meetings with the oncologist and, this time, instead of talking about things being stable and unchanging, she will rub her chin and shake her head in wonder and say something like

 

“I don’t understand it ... I’ve never seen

such a recovery from such a severe case as

yours ... no one here has ever seen such a

recovery after results like yours ... we have no

idea where the tumours went ...”

 

The odds of my surviving from this disease in the next five years appear to be quite low but, as always when measuring the odds, are still odds of a function that reflects being a human and, therefore, that's a feeling I haven't experienced before (perhaps it's just an indication of how incredibly boring my life had become before this).

 

Chemotherapy

 

I’ve mentioned before that cancer treatment today is mostly a matter of “slash, burn and poison”. I’ve now had the “slash” part of the treatment, hence the removal of my ascending colon and the lateral musculature and lymph glands. The “poison” aspect of treatment includes chemotherapy, which involves the use of drugs that target features mainly found in cancer cells but which are found in other types of cells also.

 

The surgeon promised that they — and I assume that “they” were the tumour board — were going to treat my cancer "very aggressively". At first, I thought he was referring to the fact that I'm obviously an especially valuable asset with an important role to play in the salvation of the world, so he wanted to make sure I live for a long time to fulfill my potential. Unfortunately, I quickly realized that he meant that I was relatively young and healthy enough that they could go ahead and give me a heavy dose of the treatment without worrying too much about it causing permanent damage to me. That’s often the approach taken with cancer treatment. The impact of the treatment isn’t based so much on giving the patient enough of it to effectively remove the cancerous cells. Killing cancer cells is, theoretically at least, a straightforward matter. However, there are limits to its effectiveness, and those limits reside in the tolerance of the patient to the chemotherapy drugs. The full treatment, in this case, is primarily a combination of three different chemotherapy drugs, which is standard for colon cancer of course, but at dosages and durations that might not be given to everyone. One of the drugs is leukovorin, given as an acute infusion into major veins. As the amount given is sometimes quite large, it is often given via a special venous catheter called a “Port-a-cath”. While leukovorin enhances and lengthens the duration of the effects of some of the main chemotherapy drugs, it also kills some of the cells that it should save. Another drug is oxaliplatin, a chemotherapy drug containing the metal platinum that interferes with DNA synthesis and thereby slows down the rate of reproduction of cancer cells. Again, however it is a drug that causes the nausea and GI symptoms, and its half-life is quite long, so any harmful effects it has can endure for a long time.  The main drug, another DNA synthesis inhibitor called 5-fluorouracil (often referred to by its short form — and a short form I love: 5-FU), is infused via a small bottle and pump for over a period of 46 hours. They put the bottle into a small bag with a strap on it from which they hang it around my neck and send me home. A home-care nurse will then come by my house two days later (in my case, the second Thursday) and disconnect it, flush the line and clean everything, etc. Then I'm done until the second following Tuesday (i.e., I go for a new chemo session every second Tuesday). In this case (and since I'm writing this in late Fall of 2014), that means I won't need to get chemo during Christmas week, but I will need to be on it during New Year's Eve and New Year's Day. There are 12 sessions altogether, so I won't be done until April, 2015 and the side effects (at least the ones that are temporary) won't be gone until May or, depending on the effect, even longer. Also, even though the biopsy results of the thyroid tumour came back negative for cancer, the tumour is so large (it's larger than a whole lobe of the thyroid gland itself) that they think they may have to remove my thyroid gland anyway after the chemo, so I may spend at least part of the early summer recovering from surgery, finding the best titration of thyroid meds, etc. Given the fact that this whole thing began last May, it will be more than a year of my life spent dealing with it. The oncologist also told me that, given the type of cancer I have, I should prepare myself for the possibility of a recurrence in the future, and then I'll have to go through it all again but with a different “poison” next time (although they're hoping that they'll be able to find it at the polyp stage in the future, so they can simply remove them during the colonoscopy: the “slash” treatment).

 

(Much of the information I give in this part of this blog posting comes from the National Comprehensive Cancer Network. The NCCN provides a very comprehensive (hence the name) review of cancer diagnosis and treatment written not just for physicians but for patients also. I’ve bookmarked it on my computer and I (and my wife) refer to it often. The link for resources for patients is at:

 

https://www.nccn.org/patients/guidelines/cancers.aspx

If, like me, you are fortunate enough to be married to a physician, she or he may also refer to it often, as it is updated at regular intervals.)  

 

I find myself living a life centered around the chemo sessions: days 4-6 after the beginning of the chemo is the "low" part of the sessions. I often find myself not having the energy to reply to emails, phone calls, etc. but, once I’m in the day 10-to-day 14 "up" period, I catch up on all my emails, run all my errands, etc. I’ve only had two sessions so far, so I can’t say that my initial impressions will hold up over time. Still, I do have some notable impressions that I can share with readers. The first of all is a sense of guilt, which can sound a bit strange from a cancer patient. It seems to derive from two groups of fellow patients: the first is comprised of some people at the Centre who are in a lot worse shape than me. For instance, I can't imagine what it's like to go through this when you're old. I also wonder about the people who aren’t old but who don’t have a home-based support system, and don’t have someone to just keep them company during the treatment, or who can't afford not to keep working when they're going through chemo. I'm lucky I don't have to deal with any of those challenges.

The other group that gives me a dreadful sense of guilt is that of young people. Apparently, cancer patients younger than 18 have their own part of the pediatric wing at our hospital, so the youngest don’t appear in our “regular” cancer ward. Still, the ones that do appear at the main chemo suite but appear to be very young initiate intense feelings of guilt, at least for me. I can barely keep from crying whenever I see them. Often, they seem to be accompanied by their parents who, to my eyes, seem young enough to be the same age as me, which makes things even worse (since theoretically, their parents could be old enough to be me or, even worse, children of mine). Furthermore, the young patients seem to be so happy, as if they haven’t been treated unfairly according to their sense of universal justice.

​

Nausea, the thing I worried about the most, hasn't been a problem, probably because they gave me a lot of anti-nausea medication which, in turn, makes me feel kind of "off" but not really sick (I often tell people that “... this isn’t your parents’ chemotherapy”). My fingers (and sometimes my toes) begin to tingle before I've even left the cancer clinic (supposedly, it's caused by the leukovorin infusion) and I have to be careful and not handle anything cold as it causes a pretty sharp pain in my fingers that can take 30 minutes or so to go away. It leads to some interesting moments such as when I have to take meat out of the freezer and try to peel the wrapping paper off of it while wearing gloves. They've told me that the drugs I'm taking probably won't cause me to lose all my hair, but they do destroy some of the cells lining my GI tract, and so I have intestinal discomfort that's a little debilitating but still not too bad. Last Monday, the girls had a hockey game at 8:00 PM in Stratford and it just happened to also be a "bad" day for my GI tract. The drive home took about 45 minutes with no bathrooms along the way, so that was a little stressful, but I made it home okay. Mainly, you just have a sense of feeling bad, like a mild-to-moderate hangover and, even though you could do things if you had to, you just want to rest and not do anything too demanding. In fact, I always recall that joke Dean Martin used to say about feeling sorry for people who don't drink because, when they wake up in the morning, they know that's as good as they're going to feel all day. That's pretty much what it feels like for much of the time during chemo.

Cancer and Crying

 

“Heaven knows we need never be ashamed

of our tears, for they are rain upon the

blinding dust of earth, overlying our

hard hearts. I was better after I had cried,

than before — more sorry, more aware of

my own ingratitude, more gentle."

​

                        Charles Dickens, Great Expectations

 

One thing that could, but doesn’t yet, irritate me about the Cancer Centre is the upbeat attitude of everyone, including the nurses and support staff but, especially, the volunteers. Every volunteer constantly smiles and gives your arm a supportive squeeze, etc. For someone with asocial tendencies like me, it can be a trying experience. While I'm getting chemo, volunteers come by about every 4-5 minutes to see if they can get me anything (coffee, juice, crackers, etc.). Usually, when I see them coming out of the corner of my eye, I close my eyes and pretend I've fallen asleep just so that they'll leave me alone. The last time I was there, a nurse came over to tell me that the oncologist had asked her to pass on the news that the biopsy of the thyroid came back negative and she was very excited to tell me the good news. I, and my wife, had already read enough about thyroid cancer to be almost certain that it wasn't going to be malignant, so I actually wasn't surprised at all, but I could tell that she really expected me to play the role of the scared cancer patient who gets all teary at the good news, so I acted as excited as I could be so as to not hurt her feelings.

 

Another 20 weeks of this and I’ll be done, I thought to myself.

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Beyond both having six letters, the first one being a “c”, Cancer and Crying would be thought by many people to commonly run together, although my first bout of “losing it” was about 4 months after my diagnosis. I’m writing this during my first winter as a cancer patient, which was relatively uneventful. I experienced my share of changes, of course, but I was never sure of just what changes should evoke a tearful response. Should being told that my cancer had disappeared elicit as tearful a response as being told that the cancer was even worse than at first thought and that, therefore, the time left to me could be counted in weeks rather than in months or years? Interestingly, the answer to this one seemed to be “no”. After all, tears of gratitude always trumped tears of sorrow. Such tears could be seen as signs of selfishness or, at the very least, self-centeredness. Still, I thought, rather than determine the calculus of tears, the best response would be to simply refuse to cry at all, no matter what the event might be.

 

Little did I know, at this stage anyway, just how little such responses could be controlled.

  

Every year, my daughters play in a local hockey tournament called the Jason Cripps Tournament. The tournament is named after a local fourteen-year-old Triple A hockey player who was killed when a drunk driver rear-ended the parked car he and his family were in. He was the only passenger injured, and he died of his injuries two days later. During one of my youngest daughter’s Pee Wee games in the 2014 Tournament, she gained possession of the puck in her own end and, rather than quickly get rid of the puck as most of her teammates did when they suddenly realized that they had possession, she started down the length of the rink. If they didn’t get rid of the puck quickly, the next most common outcome was for players of this age to be swarmed by the opposing team’s players until they’d lost possession of the puck, and I wondered which outcome was about to happen.

 

Okay Rachel, I murmured under my breath, don’t hog the puck too long.

 

To my amazement, my daughter began to stick-handle around the opposing players one at a time. She isn’t fast but rather is a sturdy, methodical player at the best of times, and I wondered how far those traits were going to carry her this time. On she skated until, to my continued amazement, there were no players left between her and the opposing goalie and she took her shot. She’d learned to raise the puck that Fall and, while most players at her age would forget what they learned when it actually counted, she aimed high and to the inside corner, and I saw the netting bulge and shudder as the puck went into the goal. It was her first goal in what was to be a good season for her (five or six goals: I wasn’t quite sure which and, in the house league, no one kept track).

 

One of the other hockey parents — an engineering professor whose daughter had scored goals before this game — was sitting beside me. “What have you been feeding her?” he asked laughingly while everyone around me applauded.

 

I tried to respond but the only response that came out of me was a flow of tears, a figurative bucket of tears. I was sitting in the front row of bleachers and so I knew that, thankfully, none of the other parents could see my face. The engineering prof became very silent, which made me realize that he must have seen me crying, but he pretended to not notice, which I appreciated very much.

 

Thus went my first tearful response to my cancer: crying at a goal scored by my daughter at a hockey tournament.

 

There were several follow-ups to that experience, of course, but they were no longer during hockey games. That source of tears had run dry. Still, I’ve learned since then that tears can come quickly and unexpectedly. The same daughter came into my home office late one night and told me that she’d read my second blog entry (about my trip to the Tulip Festival in Ottawa). At one point, I’d mentioned in that entry that I’ve always suspected that my daughters find me to be a bit of a disappointment.

​

“Dad,” she told me. “I just wanted to let you know that you’ve never, ever been a disappointment to us”.

 

I could feel the tears rapidly building up. “Thank you,” I said in a raspy voice as I did the only thing that came to mind: I got up out of my desk chair and hugged her in a way that hid my face from her. “That’s okay,” I told her, “you don’t have to say that”, while I hoped that I’d blocked her view of any tears.

​

“No, really Dad”, she repeated. “You don’t ever, EVER, have to worry that you’re a disappointment to us. You could never disappoint us”.

​

I held her as tightly as I could, not so much in gratitude but to keep her from pulling her head back to see just how much I was crying at her words. I eventually broke free of her and pretended that I’d spotted a piece of scrap piece of paper on the floor beneath my desk chair. “Oh, look at that!” I said. “How did that get there?” Through some gymnastic feat, I’d managed to get down on my hands and knees under my desk without letting her see my face.

​

“You don’t ever have to worry about that!” Jeez, I thought, this is getting ridiculous. I suppressed the urge to kick my darling daughter out of the room, literally and figuratively.

​

“Could you pass me that ruler?” I asked. She did so and I made myself busy, using the ruler as a mini-broom under the desk as she waited for me to come out. I didn’t come out until she sighed in disappointment and left. At least she didn’t catch me crying.

 

“Maybe this was now normal for Olivier.

Maybe every now and then he simply wept.

Not in pain or sadness. The tears were just

overwhelming memories, rendered into

water, seeping out.”

                        Louise Penny, “The Long Way Home”