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.