One Week Done...

In about 12 hours I start my second week of chemo/radiation therapy.

Week one went well, all things considered. All things considered of course include the pumping of powerful chemicals into my body, getting bombarded by radiation every day and spending two hours a day driving to and from the Juravinski Cancer Centre in Hamilton. It is not quite as wearing as it sounds, for me, but it is much much more boring than it sounds. The actual process of chemo infusion and radiation bombardment lacks real observable impact. You lay there, you sit there. Things are done to you but you are at the moment of it happening largely physically unaware that it is happening. Mentally, you are very aware.

People say to me, you look good. I think they are afraid that they will find me wasting away, gaunt, sickly looking and, for most part, none of that is the case. A couple of weeks ago I said to a friend, who had remarked that I looked good, you know if it wasn't for the swallowing thing, I wouldn't know I was sick. That's not quite true but the swallowing thing is the key indicator.

What I mean by swallowing is that it is very hard. At the moment, it is better than it was thanks to the three brachytherapy treatments I had before starting the real treatment. Before that, for a time, I could barely swallow and every bite threatened to make me gag. Now, the threat remains but I gag less and less and can get some food down. My oncologists, my nutritionist, tell me that it could get worse, swallowing could become an increasing problem as the esophagus become irritated by the treatment.

It is more than just swallowing. Eating is a true chore and the taste of food no longer brings any pleasure. The combination of those two things means eating is something I would seriously rather not do. My doctors see this as a real problem. My weight can not change during the chemo-radiation. Everything is calculated on weight and body dimensions. For my weight to change is to throw everything into a tizzy. I have never been lectured as much about anything as I have been lectured in the last two weeks about my weight staying the same. The oncology team also stress that food is a problem for all cancer patients because the cancer tumours emit chemicals into the blood system that decrease appetite.

On Thursday, we met with the nutritionist on the team taking care of me. She believes and insists that I need to eat an insane amount of food, with an equally insane proportion of protein to stay right for the chemo-radiation and to be ready for surgery in the winter. It almost makes me nauseous to contemplate the food she wants and needs me to eat.

Finding things to eat is a challenge. Fish is great, beef not so much. Eggs work. Smoothies laced with whey powder are filling and really help with the protein quota. The staple of the aged, Ensure, I can handle. Coffee is no longer a true pleasure. Beer lacks taste. My subconscious seems to crave Cheetos and my conscious mind thinks my subconscious is an idiot. I have to eat standing up, I am embarrassed to eat in public. I never know in advance what will cause me to choke, gag, throw up. Being told that at the moment my eating is pretty good but it might worsen down the road frankly scares me. Friends knowing what we are going through have been overwhelmingly generous bringing soups, puddings, juices...even a couple of low cost cases of Ensure. It has blown me and Debi away and has seriously eased the burden she is carrying in trying to make sure I can and do eat.

When you are sick, when you are ill, you learn truly interesting things about yourself. You learn about limits, you wrestle with inadequacies and with personal disappointments. I have done this in the past and often surprised myself. This wrestling with food is making me confront issues of desire, satiety, need, want and choice. This is new and this is perplexing.

What isn't new is my understanding that some things just need to be done and sometimes you just need to do the things that need to be done.

Debi tells me I have one job. I have to beat this thing. It is the work I have taken on. And I will do my job. I just never realized doing my one job would mean finding a way to eat as if I mean it.

    

Changing the Name of the Blog, the Road Map

It is three weeks since I was told I have cancer and the three weeks have been an emotional roller coaster and a real introduction into a world I was only vaguely aware of. The corner of the universe that is assigned to cancer patients, their families and the people who treat them is much larger than I had imagined, much more varied and complicated than I'd ever expected and oddly an almost secret club. The number of lives that have been touched by cancer, the percentage of the population that has coped with or is coping with cancer and its impact is layered, wide and at times scary. On one hand, I know this, I read news accounts, see statistics, read mortality and illness tables. On the other hand, looking around the pharmacy, the massive chemotherapy waiting area and the radiation labs and suites in Hamilton's Juravinski Cancer Centre where I being treated, I am struck repeatedly by how broad the swath, how hard the toll, how complete the damage of the diagnosis and the treatment really is. 

I am truly coming to fully understand the expression, "The Kindness of Strangers." Getting a cancer diagnosis can give you real insight into who you are and who the people around you are. I am overwhelmed by how much love and encouragement people have offered and communicated, I am occasionally moved to tears by the completely unexpected offers of assistance, some times forms of assistance I never knew I might need. I am overwhelmed by the sheer genuine concern, patience and interest that all the people on the team trying to care for me show every time I walk in the door. I am, to use a cliche, blessed.

And this week, I am 'blessed' with a road map. 

This is what we know:

My CAT Scan and PET Scan indicate that I have cancer of the esophagus and that it has spread to some nearby lymph nodes but no other organs, making it Stage Three cancer. The treatment that we have decided on is five weeks of chemotherapy (once a week ) and simultaneously five weeks of radiation ( five times a week ). At the end of the five weeks my body will be allowed a month to recover and then I will have surgery. The other option was five months of more intense chemo and radiation but no surgery. The team was concerned that my medical history is such that my immune system might not cope well with the five months but they were convinced that I would have no problem with the surgery. According to the team, the outcomes of either plan are roughly the same.

Treatment begins on Monday; surgery is expected to take place in February. I was told by the radiation specialist that the main side effect I could expect was sheer exhaustion. I was told by the Chemo specialist that the main side effect I could expect was exhaustion. I asked if that meant I might be doubly exhausted and the answer was...well, yes.

For me, and for Debi, whose slog through this all may well be as hard as mine, the main positive moment was when one of the oncologists warned that for the next five years I would have to keep a close watch on my increased chances of getting pneumonia. He warned that if I felt I was getting a cold or flu, I was to come to them and not a pharmacy. Debi and I agreed that being advised on what you needed to watch for during the next five years is a positive discussion in an oncology briefing.

I don't have any illusions that this whole thing will be easy. It won't. But there is a plan. It is a way forward. 

Ten Days In and This Blog's Name is Changed...it just doesn't appear that way*

It has been less than two weeks since I was first diagnosed with cancer and I know for certainty two things. I am surrounded physically and virtually by an incredible amount of love, well wishes and heartfelt offers of help. The outpouring of support has been overwhelming. How overwhelming can be measured by the fact that I have shed far more tears of gratitude than I have of fear. The second thing I have learned in the past ten days is that time really can slow down, and shift and become totally confusing. So at the same time I am having to wrestle with cancer I am confronted by a heavy course in the metaphysics of time.

On Saturday afternoon, we went to see a movie on the big screen. Debi and I both find that the theatre allows you to get lost for a couple of hours in a way that is just not possible watching a movie at home. Getting lost isn't the best coping mechanism in the world, and it should never be a steady diet but it can and does lift our spirits. The movie we saw, Bridge of Spies did so in a couple of ways. I am a bit of a sucker for Tom Hanks and Spielberg is always good for a big screen extravaganza. I loved in particular the way they were able to recreate late 1950s and early 1960s Brooklyn and East Berlin. But what most pleased me about the film was the reaffirmation of a life lesson.

It has been too much a whirlwind. We saw an oncologist on Tuesday: he had me doing a form of radiation therapy on Wednesday and Thursday and put weight on getting a cat scan done on Friday. And if the speed with which the folks at the Juravinski Cancer Centre stays steady, next week is going to be truly intense. I don't mind the intensity but I am eagerly looking forward to the day the oncologists sit down and draw the road-map in greater detail. As a friend wrote earlier this week, one of the great eases of anxiety is a sense of action. And while that is very true, I also need to wrestle with the idea of anxiety.

And that's where the life lesson from Bridge of Spies comes in. I have always loved the Dalai Lama's explanation for why there was never a need to worry. In short he says there are only two types of things that happen. There are things you can control and things you can't. If it is the former, don't worry, just do something. If it is the latter, there is no point in worry. In the movie, Bridge of Spies, based on a true story, an accused Russian spy, Rudolph Abel is being defended by an insurance lawyer, James B. Donovan. If convicted he could be executed. And everyone wants him convicted even if rules need to be broken to do so. At several points, Donovan delivers bad news or potentially bad news to Abel and Abel just nods. Donovan at one point says, "Don't you ever worry?" and Abel replies, "Would it help?"

Of course there are some significant differences between a man being accused of spying and a person talking with doctors about cancer. For the spy, so much is out of his control, for the cancer patient there are second opinions, advocating, decisions to be made so it is not a complete parallel but it does somehow speak to me.

So do I worry? Of course I worry. Does it help? Of course it doesn't help.

I am learning Not to Worry about things beyond my control, all the other issues I am tackling head on.


* It is harder than I imagined to change the name of the blog but I am working on it. I will plead being distracted by other matters.

Why This Blog is Getting a New Name

I am changing the name of this blog, both in order to reflect a new reality and to declare a new determination.

When I started the blog, it was to mark the publication of my book, The Man Who Learned to Walk Three Times. It is a book and an accomplishment that I am proud of and that makes me smile inside and out. Learning to Walk is hard and demands attention and true effort. Learning to Walk is difficult and problematic and deserves a record, an account.

Now I have a new goal, a new determination, a new milestone.

For a couple of months now I have been experiencing difficulty with swallowing. I saw doctors, took tests and for a while wrestled with the whole shitty idea of being ill yet again in a life filled with illness. At times, especially in moments where even taking another bite filled with me with dread, it seemed too much. But I would always come back to my touchstone point. Life is what it is. You deal with it as it comes at you.

Today, I was told I have cancer of the esophagus. There is still much to be determined, still tests to be done, treatments to be considered. But I know one thing. This will not defeat me.

As our truly delightful Jane noted today, this is the third time I have been diagnosed with cancer. 12 years ago I was told I had colon cancer. I had the surgery and it turned out the diagnosis was wrong. 6 years ago, a doctor made a preliminary diagnosis that I had a virulent blood cancer. Within 24 hours he had changed his mind and said he was wrong. In both cases misjudgments were made but in both cases I was determined that I would beat whatever was happening to me. In both instances, I had to peer inside and ask what I was capable of.

This diagnosis might be more accurate but it is just a diagnosis, it is not determinant, it is not the final word. Where we go from here is partly up to the medical system and partly up to me.

This will not defeat me.

Wrestling with cancer is hard, difficult and problematic. It demands true attention and true effort. It deserves a record, an account.

This blog is now known as The Man Who Beat Cancer Three Times.

Blue Suede Shoes

Those are my new, only worn twice, blue suede shoes, My daughter, Jane, bought them for me. A present to mark the publication of my book. She of course knew my story - not all my story - but when she read the book, especially the sections that dwell, some might say dwell obsessively, on sneakers and my fascination with shoes, she immediately decided that she had to buy me a pair of shoes.

I am not a shopper. I did learn after my surgery that shopping for shoes didn't have to be the true chore it had been for years. Not having to wear a shoe with a built-up heel, or a shoe that could accommodate a large brace meant that the world of possible shoe choices had grown significantly larger. I wasn't sure about shopping with Jane for shoes. She has a refined fashion sense, I have none. She can spend hours in a mall looking for exactly the right thing and leave not finding it but still happy. I get antsy after a half hour in a mall and can handle at best three stores and if I don't leave with what I was looking for I leave disgruntled. And of course there is the real problem of the gulf between the shoes I might love to wear and the shoes I need to wear. I need shoes that have some support for the ankle, that can accommodate a brace, a slighter smaller lighter brace than those I wore as a child but still a brace.The combination of all of these issues had me anxious.

The shopping trip was a breeze. First store we were in, I found the shoes I needed, the shoes I wanted. When I was in my twenties, I loved desert boots. Never owned blue shoes before in my life. It was cool, fun and a small thrill.

The next week, I wore them to a reading at the Niagara-on-the-Lake Public Library's Wine and Word Series. The night before the reading, I tried them out. Wore them around the house, walked about in them. I had to, I didn't want to trip and fall wearing new shoes. They were amazing. Some one in the audience at the reading asked how the shoes felt. I started talking about how the last time I ever wore sneakers was in the early nineties. Then I broke my foot one too many times and wearing a brace became the norm yet again. so twenty two years later I put on a pair of desert boots and I am transformed and transfixed. They are so light, they feel so not present that I am for a moment speechless.

At one point in my book I describe sneakers as a symbol of freedom. And of course that is a slight hyperbole. Freedom is much more complex than the lightness of a shoe. Regardless, when I put on those blue suede shoes for the first time I remembered exactly what sneakers had always felt like, they felt and feel liberating. They feel like freedom.

An Open Letter to the Parents of Seattle

There is a word for it. Gobsmacked. It means to be utterly astonished or astounded and there is speculation that it refers to that inherent motion of covering one`s mouth - gob being a slang term for mouth back in the middle ages - in shock at hearing something unimaginable. And gobsmacked was what I experienced when I read that `Seattle Kids Have A Lower Polio Vaccination Rate than Rwanda, Zimbabwe, Algeria, Sudan, Yemen, Mongolia.`

Stop and think about this for just one moment...There is a whack of parents in Seattle who are quite comfortable gambling with their children`s future because they are suspicious of  the government and or medical community's  reassurances about the safety of the polio vaccine or who have suspicions that scientists don`t understand what they are talking about when it comes to the rate and range of vaccines that should be administered in a child`s development. So these smarter than the average doctor, virologist or public health official individual parents have supposedly thought this through and put off vaccinating their child against polio, and I suspect some other vicious diseases as well.

I maybe gobsmacked, but I am not speechless and in that vein:

An Open Letter to Parents in Seattle (you know who you are)

Hi,

We haven't met but I feel the need to speak with you about this very strange, very risky strategy you've adopted where you don't vaccinate your child against polio because you have no plans to travel to anywhere where the polio virus is still a threat. I would have thought that a hip cool with-it city like Seattle would understand that when the World Health Organization says as long as one child has polio all children are at risk they really aren't kidding. They are talking basic science, globalization, the way people and diseases travel now: by plane at the speed of sound, undetected and pretty much everywhere. You don't have to take your unvaccinated kid to Afghanistan. Someone just needs to travel from Afghanistan carrying the virus and wham...your kid comes down with polio. Know anyone that's been to Afghanistan?

Polio used to have a much more frightening name....infantile paralysis. They called it that for a reason. The majority of the victims were infants. And those who got polio didn't have an easy ride. See children have relatively undeveloped immune systems anyway and polio is a pretty nasty virus. And the paralysis part is no picnic. If you are 'lucky' the paralysis just means a life of misshaped limbs, difficulty walking and a fair amount of pain. The less lucky die.

60 years ago, parents begged for a miracle, a vaccine that might mean their kids could be spared. But you think they were just fools, dupes of the medical establishment, ignoramuses who didn't understand how the world really works. Nothing like you, right?

So here's hoping your gamble with your kid's future works out. By the way, if it doesn't I wouldn't tell them you had a choice a chance to prevent them from coming down with polio. It might make for some very awkward silences, some extremely uncomfortable family dinners.

So you have a good day, you sleep soundly knowing you are doing everything you can to protect your children. Oh that's right, you aren't. Well sleep soundly anyway. P

Standing is Sometimes Harder than Walking

This is a photo of me taken not too long after my surgery. In it I am standing `tall`and `straight`. I am quite proud of that picture, that pose. Being able to stand `straight`has been a life long goal and a hard stance to accomplish. We may not give much thought to walking but for the most part we give even less to standing. Or at least that was true up until about a year ago.

Sitting is the new smoking, standing is the remedy, well actually movement is the remedy but standing is apparently better than sitting but not as good as moving. But standing can be hard. Especially if you are like me and have a default stance of resting my wight on my right leg, which has always been the longer stronger leg. And if your weight is to one side, things can go awry, can get painful, can be wearing. Ask my physio therapist, ask the woman who gives me massages.

When I walk, as I have mentioned, I pay attention to my walking and I am getting pretty good about paying attention and thinking about other things at the same time, which is being on the road to walking 'normally' if I can ever figure that out. But when I stand, I admit I seldom pay attention to my standing and that lack of attention is troublesome,

Yesterday, we went on a garden tour, a marvelous fun-filled exploration of 13 relatively magnificent gardens scattered around the 'old-town' of Niagara-on-the-Lake. In addition to a multitude of different walking surfaces - sand, gravel, uneven grass, slight dips, uneven paving stones - there was much standing and looking. As a consequence, by the end of the day I was worn out. Physically and mentally. Physically because the muscles in my legs were throbbing. Mentally because we are going to India in 6 months and the challenges of walking about in India are significantly more complex and I was getting irritated with myself that a garden tour was wearing me out.

After a rest, I went to our back yard where I did some raking.  After mowing comes raking. Raking has its own challenges but one of the rewards of raking is that it actually makes me confront a number of my nemeses. Our yard, like most yards, is uneven. It is not a parking lot or a lawn-bowling green; it is simply a yard with sometimes almost imperceptible dips and rises. So our yard forces me to attend to unevenness and unevenness forces me to think about how I am standing. Thinking about how I am standing forces me to stand straight, standing straight forces me to balance my weight across both legs which makes everything slightly better, slightly, because there are no miracles here.

No miracles, just one constant reminder after another. Stand straight, pay attention and be in the moment. But the other thing that paying attention teaches me is to be kinder to myself. Getting tired, getting worn out are things that simply happen to us all. Navigating all the different obstacles in 13 vastly different gardens wouldn't wear out everyone but it can wear me out. I just need to pay more attention to what is wearing me out and why. I can manage the physical wearing out much better if I learn to manage the mental wearing out. And I can learn to manage the mental strain if I keep in mind that I am learning to overcome 5 decades of ingrained behaviour. It takes time, and I need to cut myself some slack.