Seeking the New Normal

Sitting in Dr. Sur's office today ( the radiation oncologist who first took me on at the Juravinski Cancer Clinic way way back...has it really only been 6 months, sometimes it feels like 6 years...) he does a check on my appetite, asks how I am eating, growls a bit about my weight - only up a pound. I point out it is up a pound not down - and then tells me that the key now is to have regular scans, regular scopes, every three months just to make sure there is no re-occurrence of the cancer. The odds are, the reality is, that at the moment I don't have cancer in me. I am reluctant to say I am cured, I notice very few people who have done cancer ever use the phrase cured, but I am for now dealing with something truly unexpected, getting to a new normal.

A few weeks back, Debi and I went to Toronto, spent the night at the Royal York Hotel, ate a very nice meal in the Library Bar and had, for the first time in months, a normal night out. Two weeks ago, we drove to Pittsburgh ( I have always wanted to visit Pittsburgh and we can talk about that later). A road trip with a detour through an amazing state park, a night in a fabulous inn with a great meal, a couple of sunny hot days in Iron City drinking local grappa, sampling city made gin and eating truly interesting food.

The key difference between these recent experiences and what I did immediately before being diagnosed are actually pretty remarkable. Just prior to the diagnosis, I could barely eat and had no appetite. We could still travel but it just wasn't all that enjoyable for me and I suspect my discomfort made it truly unpleasant for Debi. Now my appetite is back. I can eat just about anything. I can only eat about a third of what I used to eat and my love of beer has been shelved. But I can eat and there is nothing wrong with a white wine or a good grappa. A couple of nights ago I had a bowl of potato garlic soup which was incredible. I loved the flavours, the texture, the taste. The fact that it was a small bowl was of little consequence. The wine I had with the soup was crisp, tart, cold and a bit too expensive but I am not complaining.

All my doctors tell me that the next couple of years are key. This is the time of watchfulness. The first 24-36 months after my type of surgery is the time when a re-occurrence is most likely. My surgeon says, I tell people, spend the first few years doing the things you most like doing. It is a plan.

So the new normal? Figuring out what a decent sized meal really is. Finding wines I really like. Reading books that matter and appeal to me. Talking with and spending time with people I truly enjoy. Writing what matters to me. Travelling with Debi wherever we can and whenever we can. Being with and content in the moment. This is all the new normal.

Burping and Sighing

Part of having cancer, a much bigger part than I ever imagined, is the emergence of a form of interior dialogue/monologue that has become the back beat of my day. Of course, this isn't unique to cancer. It also happens when we are facing pressing anxieties, tragedies, difficulties and distractions but this loud constant reworking of my past, present and future in such an obvious and far too insistent fashion has surprised me, and, I have noticed, surprised others, especially when the 'conversation' makes itself heard.

There's a near constant underlying, what next, what now, why this, why now mixed with things you miss, things you hope you enjoy again, things you wish could have gone with the things that cancer has already stolen from you. There is a ruminating, reflecting, revisiting, rethinking of all kinds of memories and incidents from 55 years ago, from yesterday and in anticipation of tomorrow. Meditation strives to bring you into the moment with silence, this 'cancer conversation' tends to drive silence, meditation out the window with its own far too powerful faux 'living in the moment'. 

It can be, trust me, very distracting, especially when you find yourself deep into the thing at 3:00 am or while in the car on your way to one more appointment this week. But it is not without its blessings. It helps me put things in perspective. Some political squabbles aren't worth their time, some relationships aren't worth their time, some time wasters aren't worth their energy. ( If you haven't figured it out yet, there is actually a reasonable hierarchy of time-wasters and I'll publish it soon ). I have learned that while I might never actually eat a Cheeto again, I can probably cope. I am still working on the idea that I might never have a beer again in my life but I imagine I will resolve this as well. 

My first concrete awareness of the 'conversation' came before the diagnosis. One of the symptoms was a significant increase in the need to burp. I have never been much of a burper but as my eating difficulties increased last summer and fall so too did burping. And everytime I burped I would apologize with 'excuse me,' 'sorry'. Strangely, often others didn't hear the burp and were totally perplexed by the apology and that required an explanation and it got really complicated. In the hospital a nurse asked my why I apologized so much and when I explained she told me in no uncertain terms to just stop it. When I apologized for apologizing for the burping she rolled her eyes and moved on to deal with a more cooperative patient. Debi has had to cope with a lot but surely to goodness being woken in the middle of the night by someone apologizing aloud for a burp she didn't actually hear must be close to the top of the 'irritating/ludicrous' list of things that partners of cancer patients must cope with. 

But apologizing for inaudible burps is only the tip of the iceberg. A serious feature of this on-going internal dialogue is the far too audible and exterior sigh. Debi and I had distinctly different childhoods but one thing we do share is the experience of having a mother who sighed. All of us tend to sigh at one time or another...even preteens can be heard to sigh depending on the situation. It has all the earmarks of an almost automatic learned human behaviour akin to walking. The word itself is a little over seven centuries old but there are all kinds of indications that it stretches back to before speech. A dictionary says to sigh is to "emit a long, deep, audible breath, expressing sadness, relief, tiredness or a similar feeling". Without doubt true but insufficient.

What the dictionary leaves out is that the sigh is like a trump card; whatever is going on in your world compares not a whit to the things I am experiencing. And trump cards might be great in bridge but are lousy in life. When my mother sighed as she grew more ill there was nothing to do but feel inadequate. There is nothing another can do to ease or relieve the 'sigher' of their sadness etc. And while often a conversation between two people can consist of one simply listening to the other the sigh turns the conversation into a soliloquy. The sick person is speaking, so 'listen up' is the essence of the sigh at its most unfortunate. 

I don't sigh all the time but enough that I am aware that the internal is becoming decidedly too external and that needs to stop or, if not stopped, be curtailed or reined in. I am human and will sigh, I need to be much more aware of the circumstances of my sighs and the messages my sighs carry. If I hadn't already resolved to stop apologizing for things like burping, I'd apologize for sighing. I think instead that in a life where I have to learn some things over and over, it is time to unlearn something I didn't even realize I was mastering.       

Surgery: it's Tensions Terrors and Traumas. I am home.

First things first:

I am well, at home, learning to eat again - harder than you might imagine- and feeling okay.

Never bury the lead is a guiding principle of journalism, never keep the audience in the dark about the key issue, the key revelation, the key truth. I survived surgery. Relatively speaking, I have survived well and while the trip is by no means done, the journey for now seems so much more navigable. We always want the latest step to be the definitive one, the piece of the puzzle that turned things around but health doesn't really work like that and cancer doesn't really get solved like that.

Strangely enough making it into Hamilton for surgery on the 16th of February was more difficult than most of the other steps in this medical drama. When we left the house it was the early moments of a blizzard that made the normally easy trip harsh, tense and worrying. As Debi said as the car slid slightly as every bit of the surface seemed buried in ice, snow, or a nasty mix of the two, there is no point in getting killed in a car accident on the way to potentially life-saving surgery.

The surgery itself was 'complicated but routine.' And long. Debi had to deal with the anxiety and uncertainty of an operation that ran longer than expected, with doctors who were less clear than they needed to be about how things went. I was the lucky one, under an anesthetic, unaware of just how much time was passing.

Snowstorms, a shortage of real information, medical people being oblique or circumspect were just the things that happened that day to Debi, reminding me yet again of how little we acknowledge the intense and incredible strain illnesses put on others, not just on the one who is sick.

Complicated but routine translates into being opened up and having a section of the esophagus and the stomach cut out and then reshaping the stomach and what remains of the esophagus into a new functioning whole. The esophagus, the breathing tube, the aorta, part of the lymphatic glands all come together in sections and in my case the surgeon was surprised by just how close the aorta and esophagus, especially the part that needed to be excised. were. Cutting out the one while missing entirely the other was part of the reason the surgery took so long. At the end of the procedure, everything is closed up, everyone believing, hoping, praying that what needed to be removed had been so.

Once I did wake up, there was pain - lots of pain - grogginess, and tubes...tubes everywhere. Tubes that took stuff out of me, tubes that put stuff in me, tubes that let the medical team monitor me. Tubes that were necessary and at the same time made me feel and appear very ill. In addition to finding the most apt pain management system, there was the whole thing about not taking anything by mouth for a week, Over time the tubes came out, the pain became manageable, not taking things by mouth became slightly tedious and my medical team kept telling me how well I was doing. So ten days after checking in, I checked out and, on a much nicer, though still slightly snowy, day, Debi drove me home.

At home the tedium of recuperation sets in. Change and improvement are incremental and by no means unidirectional. Some days the eating is a charm, some days the diarrhea nearly intolerable, not to mention deeply embarrassing. The drowsiness seems to be abating, the energy seems to be returning, the pain today is less than yesterday but we are still only days into what was described a a 4 to 6 week process and the human impulse is to want it to all be better now.

But the top line is that I am home, I have survived complicated, difficult surgery and there is every reason to believe that things are on the mend, if I can borrow and twist one more cliche.

 

Once More into the Breech or how I contemplate yet again major surgery

There was a period, a short period, of about a year and a half when I just figured I was all done with this. There is an old Irish truism, made deeply popular by Woody Allen, about never telling God your plans. 

I don't like hospitals. I don't like surgery. I don't like contemplating either. And yet, here I am in the winter of 2016 doing just that. I wanted sun and heat and instead I am getting the extremely bright lights of an operating theatre and the less then soothing sounds of a hospital ward.  

On Tuesday, the 16th of February I have to check in at St. Joseph's Hospital in Hamilton at 6:00 AM for surgery that will begin at 8:00 AM. My surgeon and the team will excise part of my esophagus and part of my stomach, reshape the whole thing, stitch it back together and, all things being equal, I will be rid of this cancer. 

I spent much of Tuesday listening to Nurses, Anesthesiologists, Physiotherapists explain how it was all going to work and making sure that I understood that for the first seven days post-surgery I would take nothing by mouth...nothing...not a sip of water, not an ice chip...nothing. Everything comes to you through a tube: protein, carbs, vitamins and everything else a body might need. See if you stitch up the inside of the esophagus, you've got to let the stitches heal without getting wet. One concern was whether I'd get bored. I assured them that getting bored isn't something I do. If I can spend a year on my back I can spend a week without putting anything into my mouth. That's week one. 

Then I learn to eat all over again. I figure if I can conquer walking, I can learn to eat. Just have to learn to eat less, in smaller meals, more often. I have to learn that there are foods I probably will never eat again and I have to learn to adjust. Apparently, there was a time when doctors and patients believed that this surgery and the impact it had on eating was the worst possible thing you could do. But I was pleased to discover that someone actually did a study on what people who'd had the surgery really thought and it seems this is not the soul destroying outcome some people believe it might be. Seriously, we are talking surgery to remove a cancer with great outcomes...how could I not do this?

That still leaves my deep set-in-the bone distaste for hospitals and surgery. That still leaves my cellular level objection to anesthetics. It is not a personal thing...I like doctors and nurses and physiotherapists. I literally owe my life to them. But that deep gratitude doesn`t mean I wouldn`t rather restrict my encounters with them to cocktail parties. If I could avoid next Tuesday, avoid it in any real practical sense I would in an instant.

One thing I have learned is that there are real things you need to do in life to survive. Sometimes, a lot of the time, that means doing things your very soul screams out NO against. So on Tuesday, the rock of my life Debi, will drive us to Hamilton and I will check in at 6:00 AM for an operation that is scheduled to begin at 8:00 AM. 

Assuming the hospital WiFi works and the pain levels are manageable, and of course assuming the dietitian has allowed at least one hit of coffee to be mixed in with the food fluid bag, I might even blog about the day come next Wednesday.  

      

Ziggy, Severus and Perspective

Time might be fleeting but it can also weigh heavy.

Without doubt it has been a rough week for fans of David Bowie and Alan Rickman and if you are a fan of both...it was a double whammy of unexpected death. When I worked at CBC's The Journal, years ago - when Television Current Affairs had the power to shape a national dialogue - whenever two famous individuals would die in close proximity we'd nod our heads and remark aloud that death came in threes and wonder who would be the third. As of this moment, I am still waiting for the name and desperately hoping that whoever it is, they don't die of cancer.

And if you are crazy about Dancing in The Streets and fabulous acting and you happen to be dealing with a cancer diagnosis then you might be even more bummed out by those seemingly inevitable lines: "died after battling with, struggling with, years of coping with cancer." Don't get me wrong, I am not sitting here awash in doomsaying or worrying deeply about my impending death. The opposite, in fact. But when I read the obits, something I have done for decades, and cancer is the reason for the death, especially an early death, I get glum for a few minutes. I suspect that is inevitable. After all what else do I really share with Rickman and Bowie, other than my incredible ability to carry a tune or portray evil so effectively (not), than the fact that all three of us have (had) cancer? But in reality, and this is what really truly has me writhing, I don't even share that. And just at the point where I was about to get truly dark, I open the New York Times and read a review of Clive James' latest book of poetry, Sentenced to Life. You know the man was diagnosed with terminal leukemia in 2010...and since then he's written 6 books. I think he's the model I'd emulate.

Cancer as a diagnosis never comes without a designator... cancer of the liver, breast cancer, colon cancer, pancreatic cancer and so on. And each cancer has a different prognosis, origin, treatment options etc. Cancer scares people and it saddens people. But making sense of cancer actually does demand that you pay attention to odds, treatments and possibilities. Paying attention to these issues allows you to actually wrestle with your situation in a constructive fashion, in ways that help.

And if this sounds like inside baseball, it is actually. These types of distinctions matter to me, to Debi and Jane, probably not so much to obit writers, Snape fans, Glam aficionados or the recently deceased. But these are the thoughts that come to you at four in the morning when it is dark and the house is quiet and you are on hold.

I am on hold. My chemo and radiation is done and my CT scan doesn't happen until early February. I have to wait that long to see what's up with the tumor and whether surgery is possible. My surgeon's nurse tells me that on average surgery happens about four weeks after the scan which would mean early March. On one hand, this is really normal, on the other hand this is crazy making. Waiting for surgery is anxiety inducing on its own ( trust me I know this from too much experience), waiting to see if you can even have surgery is a whole new order of anxiousness. That's what they invented meditation for, trying to sort out the true difference between normal and crazy making and, of course, it is all in the perspective.

So now at four in the morning, I ignore the obits and watch old movies staring Alan Rickman (God, he is good) and YouTube videos of Major Tom.

Oh and just as I was about to post this, Celine Dion's husband has just died, after a two decade struggle with cancer. That's number 3.

Phase one done: what next?

Late in the afternoon of New Year's Eve, I walked out the doors of the Juravinski Cancer Centre atop the mountain in Hamilton, wished Gus the security guy a happy new year, climbed into the car, smiled at Debi and we headed home. We had a three-day break and we needed it. Driving in to Hamilton is hard, getting zapped by radiation beams and being pumped with chemicals is tiring. What made the three-day break even sweeter is that we could see the end of this, even if not yet the end. 

Before the end of the first week of 2016, I am done with phase one of dealing with this Cancer thing. By Thursday the 7th of January I have had 25 radiation sessions and 4 rounds of chemotherapy. In the radiation suites there is a bell and the tradition is that when you are finished you ring the bell three times. Trust me, I rang the bell so hard you could hear it where-ever you were on the floor.

For the most part, and I am knocking on wood here, the impact has been minimal. Fatigue, at times deep fatigue, but otherwise few serious side effects. I know all kinds of people have been laid low by the sheer impact of chemotherapy or radiation or a combination of both. But me, I have for the most part skated. My doctors tell me that it is sometimes the case that people sail through and then at the very end get whacked. I am OK if that happens, I'd prefer it not to happen but if needs be, let me wrestle with it at home in bed without the daily commute to Hamilton.

I have watched people having to cope with the knock-out punch that chemo/radiation therapy can throw at you. One day I was travelling from the lobby of the centre to the floor below where the radiation suites are. A woman was heading for the elevator and I held the door for her. She slowly shuffled in. She was bald, wrapped in many layers as if freezing ( and the temperature that day was balmy) and once past the doors she thanked me and leaned against the elevator walls. In the short time it takes the elevator to go down one floor...we are talking a handful of seconds....she was sound asleep and I had to wake her when the elevator announcement, " Floor Zero" didn't. She thanked me, shuffled out and headed for the radiation suites. Being tired can wear you out...watching someone so tired and knowing why can make you tear up.

So phase one is done. Now it is 3,4,6, maybe 8 weeks of rest and rebuilding the immune system. Chemo did knock the stuffing out of my immune system. I am prepping for surgery, which everyone (meaning the medical team, Debi, Jane and me) assumes will take sometime in February. The idea is that having zapped, attacked and brutalized the tumour with radiation and chemo, it is shrunk and dying and cutting out what is left is the next stage. Part of the reason for waiting and resting is so that my esophagus can heal from the havoc that radiation wrecks on cells and tissue. The doctors all speak as if the surgery will happen though everyone acknowledges that there is a small percentage of people in my position who for some reason can't do the surgery but we are told we will deal with that if that contingency proves true.

Strangely enough, this phase might prove to be tougher than phase one. Not seeming to do something to battle the disease is anxiety inducing...shouldn't we be doing something? Can you really beat a fast moving disease by sitting still?

One more shot, I guess, at learning to worry about the things I can change and not worrying about the things I can't.

.

Week Three Goes Nowhere Near According To Plan

One thing I have learned in my lifetime of exposure to medicine is that the old cliche about it being more art than science isn't quite right. There is loads of science, constantly shifting and evolving science, and there is also lots of art rooted in experience, judgement and a mix of expectation on the part of the doctors and the patients. And these two elements are all wrapped up in the unknowable, how the individual in question, both the conscious being with a name and an identity and that being's body, are going to react to any given experience, any given treatment. 

There are always hitches in a plan...Robbie Burns knew that ('the best laid schemes of mice and men'), philosophers and theologians know that ('from your mouth to God's ear'.., 'Man plans, God laughs,') But I am a relatively optimistic individual and I fully expected that the plan for tackling my cancer would stay on course at least for the first half, but not so.

When the options were laid out during the oncology consult, the doctors were concerned that the option that involved months of chemo might not be compatible with my immune system. Well given that my immune system, or the white blood cell component of my immune system, doesn't seemed to have coped well with two weeks of chemo-radiation, I can at least conclude that they were right about that. 

Measuring things is complicated. On Monday, after having blood work down, one of the pharmacists, explained that one of my counts was at .9 and that they were really uncomfortable proceeding with chemo when a white blood count was lower than 1.5. So no chemo for me this week. I have to admit I immediately conjured up the image of the Soup Nazi in Seinfeld telling Elaine, 'No soup for you'. It was a blow, I am in the chemo waiting room surrounded by all kinds of people waiting to get on with being treated and listening to a very kind pharmacist explain that we just can't go ahead this week gets me down. 

See, I have been doing relatively well with the chemo. Other than fatigue, none of the expected side effects have been occurring. I just imagined everything was going according to schedule. What I now know is that wiping out the immune system is one of those intended-unintended consequences of chemotherapy and when you combine chemo and radiation the possibilities are increased.

What most bummed me out about my conversation with the pharmacist was her response to my question: "so what do I do to boost my white blood count?" She looked at me and replied, there is nothing I could do. ( There are things that can be done apparently but those things are out of my control.) I hate these types of things being out of my control. ( I know, I know...worry about the things that are in your control....yada yada yada)

So this week, no chemo but the radiation marches on. Also this week, consultations with my oncologists about how we get past this roadblock. As I said, I am an optimist. I do believe that, and I have good reason to believe that this is simply a curve in the road, a google maps snafu if you will.

The science is still there, the art and the best judgments that make up the focus of medicine are clearly a bit more of a fudge this week.  

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.

Trying to stay balanced...it is harder then we think...

The other day, in our kitchen, I stepped back from the granite island towards the stove. In doing so, my legs moved in order, right leg first followed by left leg and I was now in a significantly different spot and I turned to open a drawer filled with spatulas and ladles. As I picked up the slotted long handled spoon that I often use to scoop out rice and beans from a pot, I suddenly froze as I remembered that I had just stepped back from the granite island, without using the cane I normally have nearby, without any mobility aid at all.  Stepping back, not looking at the direction I am moving in, trusting my brain-body combo to get me there in one piece and upright. I had to chalk that one up in the win column.

Yesterday, on a streetcar travelling south on Broadview heading to a wedding, I ring the bell and stand, with my cane in hand, to head for the door, one leg moving confidently ahead, the second leg not quite finding a firm footing in the sliding shift movement of the street car and there I am almost tumbling down into the lap of a small child. Her look of terror at what might be about to happen and my sense of chagrin and embarrassment at not being able to stand steady on a moving streetcar resulted in me silently adding one to the loss column. But then I thought, well, maybe a tie...I didn't actually fall and no small children were injured in the construction of this life lesson.

Another week in my seemingly never-ending effort to conquer a very particular part of walking, maintaining my balance. Balance is about more than not falling though not falling is a big plus.

Trying to stay balanced is almost like using a yo-yo...it's harder than it looks and easier if you don't think about what you are trying to do. Sometimes, when I am walking, I catch myself in a stumble and when I do, I try and understand why I almost fell, why I almost lost my balance. Balance is about much more than a single activity, it is more like a process. It involves muscles and nerves in the legs and feet, eye and ear coordination, a highly tuned sense of space, some very complicated, very fast calculations by the brain with extensive feedback between the brain, the nervous system and the entire musculoskeletal system.

Balance is actually much more than a mere physical activity; it is a vital indicator of health and prospect. There is a reason the notion of balance gets used in so many contexts. It is about keeping things (mental, social, physical ) on track, on an even keel, so to speak. If you lose your sense of balance, in any one or all of the senses of the word, bad things can and do happen. As you can imagine, and as I have learned, there are all kinds of ways that balance can go wrong. But there is some very encouraging news about how balance can be improved through exercising and challenges.

This is something I learned in physio. Almost from day one Vaiva had me standing on foam, wood, and plastic boards, mats and beams. Some were pivoted on balls, some on half balls, sometimes she put me on trampolines. The idea was, learn to walk,step, balance and move back and forth by challenging the mind and body to conquer all of this. Improving balance is like most exercises; you get better through the doing.

Alex Hutchinson is a writer and a runner and he had a fantastic column in the New York Times a few days ago where he laid out his own experience and some of the fascinating new research going on in the science/medicine of balance. It is a fascinating read and as is true of much of scientific research, the news is good, change is possible.

I know that is true because a few days ago, I stepped back without thinking from the granite island in our kitchen....

The Man Who Mows The Lawn While Using a Cane

Not long after we moved to Niagara On The Lake, dear friends from Toronto mentioned to us that they had an acquaintance who knew our house and knew the previous owners. In a conversation with our friends, he mentioned how he had driven by and noticed a man moving the lawn while using a cane. I will confess, that would be me.

Before we moved, before my surgery and the lengthening of the my leg, I didn't mow lawns; we didn't have a lawn. We had a magnificent rock garden, a hill of trees, several beds of plants and a big deck. No lawn, no lawn mover. Our new house has even more astounding gardens but huge amounts of grass. So we have a mover (electric re-chargeable) and I mow the lawn. One of the reasons I mow the lawn is because Debi does so much else and besides, I should be able to mow a lawn right?

One the things you learn when you learn how to walk is that walking involves muscles, tendons, bone, joints, coordination and balance. In a way walking is physical, mental, conceptual and complex and no where is this more true than when it comes to maintaining one's balance. It is all about your brain-nerve interface sense of where you are at any moment in relation to the ground and what needs to be adjusted to stay upright. It is done faster than you can think and involves a steady series of adjustments, shifts and tweaking of direction, position and poise. So if you are on an even flat surface, staying upright and steady is relatively simple. If you are on an uneven surface, well not so much. And if you think about a lawn, despite its appearance from a distance, a lawn is some distance from the idea of flat or even. So on a flat surface, I can walk without a cane. On an uneven surface, it is more complicated.

So when I mow a lawn, I keep a cane handy. Yes, it is awkward, and ungainly and to a certain extent ludicrous but it works. It helps me maintain my balance while I mow and yes I know that people stare at me as they walk or drive by and I am sure some of them think, why is that guy mowing a lawn if he needs to use a cane to mow a lawn.

I had dinner with a couple of old friends the other night and one was talking about what life was like after a truly epic service at the CBC and after commenting on a number of aspects of his new life he observed with great delight that he found himself taking huge pleasure in the most ordinary of life's activities. I understood completely. After my surgery, after my stint in a rehab hospital, after learning to move about more confidently, one of the household tasks I took back was emptying the dishwasher. Filling up a dishwasher with dirty dishes and then taking out the clean ones and putting them away may sound close to mundane, boring and mindless but I found and find the process liberating and affirming.

For most of us, doing the ordinary necessary things of life is often truly a chore. But sometimes you learn that ordinary necessary things of life are as much a part of the moments that stitch together to form a life as are the adventures, ecstasies and thrills that we enjoy so deeply. You learn in mindfulness meditation that life is moments in sequence and the moment spent stacking a plate is as much a part of life as breathing. Being able to empty the dishwasher was and is a sign to me that my life is on track, that I can and do help maintain the web of connections that makes me human.

So too with mowing the lawn. It isn`t a `big`thing, but it is a thing that needs to be done and if I don`t do it, someone else has to. If you have a lawn it needs to be mowed. And the reality is that mowing a lawn is good for me. It forces my body to move in ways it may not want to. It forces my brain to pay attention to balance. It shows me things about moving and walking that I need to attend to.

Learning to walk again has taught me many things, learning to walk and mow a lawn is teaching me other things, some different, some just variations on a theme. A wise person once said you can find the essence of life in a drop of water, I am learning you can find the meaning of life in mowing a lawn and sometimes the meaning of life comes with a cane.  

Being Reminded What Polio Means Today

This morning there was a news alert from the New York Times reporting that the UN was once again taking up polio and measles vaccinations in Liberia now that the country was free of Ebola. It is one of those real good news bad news days when the absence of one extremely deadly disease allows you to continue to work eradicating other less deadly but nearly as devastating diseases. As I have mentioned many times before, I have an ear tuned and an eye pealed for each and every reference to polio. It is that obsessive compulsive reflex that everyone who has ever been touched by a disease or disaster harbours for the rest of their lives.

During the Hot Docs Festival in Toronto, late at night, after talking for two days about my book, I went to see the new documentary, Every Last Child. It is a fascinating film, funded by the United Arab Emirates and the Gates Foundation of the twists and turns, deaths and delays, hardship and hazards of trying to vaccinate every last child of Pakistan against polio. For a variety of reasons sections of Pakistani society are opposed to vaccinating children against polio, in particular elements of the Pakistani Taliban. In the documentary we are taken through various efforts to get the kids inoculated.

Two segments in particular struck chords in me and at times left me nearly in tears.

One involved a man in his late twenties, early thirties perhaps, who had little movement in or control of his legs. His efforts to move about, to take a shower, to find any employment, any community were heartbreaking. Years ago we visited India and numerous encounters with individuals crippled by disease, many probably by polio, left me at the time numb and understanding that all that separated me from them was truly dumb luck. I was fortunate to be born here; they were not. I lucked out, so to speak, in having access to a world-class health care system; they did not. Watching this man navigate the world left me strangely grateful for the opportunity to learn to walk three times. As hard as it has been to do so it pales in comparison to that man's daily life.

The other segment involved a young boy, a toddler who had been stricken suddenly with paralysis of the legs. Watching him be examined, be probed, watching technicians fit him with casts, fashion braces, prepare shoes and then watching physiotherapists try to show him how to walk in the braces was heartbreaking. Watching his father look on with near despair at what his son would have to learn to do, watching him worry aloud about what chance his son would have in Pakistani society without the use of his legs left me speechless. The truth that was beaming from the screen was like a sucker punch. It left me reeling inside. Tom Roberts' film is worth seeking out. The story is both powerful and urgent.

Talking and Talking about the Book.

The book has been out for three weeks and the reception, the reviews, the reaction have all been very reassuring and somewhat embarrassing. I am not an unduly modest individual but the kudos and congratulations have at times choked me up.

What I have found most moving at the various events is the inevitable approach by a stranger who tells me about a parent, a relative, a friend who is experiencing or experienced some extreme difficulty, often associated with polio but not always, and the troubles that a friend or relative went through to maintain even a semblance of mobility.

The stories don't come with questions or even comments really, they are simply a sharing. It is as if me being there, my book being published is a reason to talk about what they witnessed, the at times incredible pain and effort people sometimes have to make to overcome an illness, to manage a disability. I am reminded again and again that the Buddhist notion that 'life is suffering' has a crystal clear ring of truth at its very core. People endure pain, confront obstacles and wrestle with sometimes near impossible difficulties and for the most part there is no forum, no occasion, no time to discuss or share this most basic reality.

Far too often we find ways of being glib, avoiding difficult conversations, all in the interest of not troubling another person with our own burdens. What we miss, what we lose is that most basic of connections, that sharing of our common humanity. I met one man who describe a near relative who had struggled his whole life with even the most basic mobility and he wanted to know if his nephew would enjoy the book or would the book make him sad. I said I didn't know and we talked a bit about the nephew and his approach to life and then we talked about the book and he nodded his head and said, "I think he might enjoy it," and he asked me to sign the book. As he walked away I thought, wow, would I enjoy this book if I hadn't written it, if it wasn't about my life? I think so, but it is a question I am wrestling with. I never intended my story to be 'inspirational' and some of the most pleasing comments I have received describe the telling as open, honest, blunt. For now, as I mull this over, that will do.

Humbled by My Own Book

Working on a memoir means always learning new things about who you are and always discovering new buttons that, when pushed, unleash emotions and meanings you thought you were long past or finally over.

On Tuesday, April 14th, in the company of many many friends and the loves of my life, Debi and Jane, we launch the book and the air is filled with congratulations. Everyone makes a point of telling me how excited they are and how brave I have been and am being. I am truly touched, floating a few inches about the floor and deeply humbled that so many people both wish me success and are intrigued with the book.

If you think writing a book is a challenge, the task of promoting it is equally daunting. My publicist, Shona Cook, is constantly drumming up reasons, venues and opportunities for me to talk about my story, and expound upon some of the themes in even greater detail. For years, I made my living trying to think up questions for authors that wouldn't leave them bored or seem predictable. Now, I am on the other side of the microphone and finding it much tougher than it seems.

Later this week, I appear at the Ottawa International Writers Festival and for the first time I will actually read from the book to an audience of strangers. I am feeling nervous.

So I sit at my desk, pick a section of the book to read and rehearse in front of Debi. It is the chapter that details the year I spent on my back in a body cast when I was twelve. The chapter is nine pages long. By page four, my voice is cracking, and my eyes are tearing up. By page six, I am weeping. I am weeping partly because I haven't read it aloud before but mainly because I feel so sad for that little guy. I finish reading the chapter, struggling through the tears because I have to, it seems important to do so and because Debi wants to hear the end.

After a minute, I wipe my eyes, half smile and say, "well, maybe I won't read that chapter in Ottawa."

The Right and The Left of Me: A Tale of Two Bodies

" I could cut your body in half, and it would be like two different people, the two halves are so different"

Throughout much of my life I have experimented with various ways of treating the soreness, stiffness and pain that has to greater and lesser degrees helped define my waking hours. Years ago, the pain and discomfort were extreme and forms of self-medication were as common, sometimes more common, as visiting a specialist in managing or ameliorating pain. And when not self-medicating or meditating I often tried a personal version of stoicism, believing that ignoring the pain might make it magically vanish. Needless to say, none of these were the most effective or soundest of choices.

In the past couple of years, since my last surgery, I am much more attentive to finding the best, the optimum treatment of whatever pain and discomfort I am feeling. Let's just say I have matured. I pay serious attention to all the various alternatives and try and choose the ones that seem most likely to be the healthiest, the most practical.

On Thursday, just five days before the launch of my book I went for a massage, a 'deep tissue' massage, sometimes called a sports massage, similar to a Shiatsu massage. My right shoulder hurts, my right upper thigh muscles throb, my daily exercise routine is at times debilitating and I knew that I needed some way to lower the physical anxiety if for no other reason than so that I could better cope with the emotional anxiety I was experiencing on the eve of the book hitting the shelves.   

It was by no means the first time I had had this type of massage but it was the first time in Niagara-on-the-Lake and the first time with Breanne Schultz who has very conveniently set up her practice right around the corner from me. In many ways it was my classic first encounter with a medical person. Quick recap of a complicated history and a fast summary of what concerns me at the moment. Her reaction, 'well quite a project then' and a question about deep tissue and how much pain I might be used to.

The hour goes by fast and the pain of the massage and the pressure is both extreme and welcome. I can feel the impact and appreciate the partial temporary release and accept the knowledge that this is going to be a longer term thing than I might have thought. At one point while massaging my upper thigh her hands feel like a knife cutting the muscle. At another point she is massaging my upper back and she asks if I feel that hardness like bone, I say yes and she says yeah but it is muscle; it should not be hard like bone. At the end she gives me a sense of what we are dealing with.

She tells me she could cut my body in half and it would be like two different people. My right side is tight, tense and hard bound in ways that are difficult to describe, the left no where near as much. It makes perfect sense to me, the right side has always taken the brunt of keeping me moving, keeping me going and that hasn't diminished since the surgery, since the straightening of my body since the lengthening of my leg. One of the tricks, one of the things I struggle with daily is reminding myself to shift weight so it is evenly balanced. You tilt to the right for 60 years and it takes a bit of reminding, rewiring, to stand even and spread the weight and the burden.

We discuss treatment options. I choose the more frequent visits, I choose confronting this head on. One thing I keep learning is that attending to these things is almost the equivalent of a full time job, but it is the work I have taken on.

Now if I could find a deep tissue treatment equivalent for the emotional tension I am feeling.