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.