Saturday, 24 August 2013

I had an attack of some kind this morning a few minutes after I got up.  All of a sudden I could not breathe at all.  None of my tricks were working.  I could feel the panic rising.  Alone in my office, trying with less and less success to stay calm I tried to restart my breathing fitfully.  My chest burned and all my muscles were spasming uncontrollably.  I could feel my consciousness starting to fade.  It was terrifying.  After what felt like an eternity I began to gain control and get my breathing into a rhythm.  This led to hyperventilation and I was swept with a wave of nausea and chills. Sweat poured out of me, I was soaked in an instant.  Then I started to shiver, harder and harder.  At that point I had regained control of my breathing again and I knew that the worst was over. I had come close to getting Nicole to call 911. 

 She did not see it, I kept to myself in the office.  I wandered out of my space and went to join her in the living room.  She was alarmed at the sight of me shivering and sweating.  A nice blanket was brought out and soon I felt ok again.  I ate a cookie and within a half hour I was talking non stop, playing with cats, dressed and bird watching a beautiful cardinal who put on a show for us at the big window.  Now, a couple of hours later, whatever the hell it was is past.  I feel quite good again.  I will have a nice easy Saturday.  Two soccer games on this morning.  I have spinach gnocchi and a tomato sauce to make this afternoon.  Couple of movies this evening and a bit of G+.  I have so many things I want to write about, too.  A lot of stories to tell.   

Wednesday, 21 August 2013

My wife, Nicole Dumas, is my hero in real life.  She has an indomitable spirit, for real.   She was simple when I met her and she is simple still.  We are not at all alike in character.   I complicate everything, she simplifies it.  

We met two weeks before my 30th birthday.  She had just turned 39.  It was a Friday in mid February.  I was starting a new job on the following Monday and I thought I would stop by to check out my new office and meet the people.  I was returning to Montreal that very day after five years in exile in Ottawa and various parts. Though I should not have been, five years earlier I was caught by surprise by an instantaneous and completely unexpected end to my marriage to the girl next door.  Someday I'll write about those years.  Enough to say that I tried hard to destroy myself with drugs and alcohol, moved away and carried on generally very poorly. Eventually I wearied of it, my body and soul said no more.  I went back to the real world, a step at a time. I cleaned up.  The scars were deep but I survived.  One day I decided I wanted to go home again, if I could find it.  I missed home.  That was when the chance to move to Montreal with a very cool job materialized.  I took it.  

She was sitting in a glass walled wood lined board room, a bottle of Johnnie Walker Black and a crystal tumbler filled with a couple of fingers of scotch, in front of her.  She was wearing a tight black velvet dress and she was gorgeous.  I don't remember the rest of the office visit at all, as if it did not happen though I am sure it must have.  She invited me to sit and have a drink with her.  Of course I did.  Eventually, somehow, I convinced her to take me home with her.  I did promise to make her the best steak she ever had, and she assures me that I did indeed do that.  Just as I was closing the door and leaving peacefully, if somewhat confused, much later that night, she grabbed my arm and pulled me back inside, and, that was that.  I never did leave.

One day led to another.  After a while we jokingly started to make weekly contracts, then monthly.  We both had nothing at all when we met.  Nothing.  Nicole had a little bit of cheap furniture.  We had no debts, no assets.  After a while we decided to team up 100%.  No mine, no yours, just ours.  We had a lot of fun together.  Nicole is very bright.  Her bookshelves were full, rooms of them.  Four languages.  She is, was, proficient in three.  My family and friends grew to like her.  I grew to love her.  She comes from hard times.  I don't know anybody who had a more horrific childhood than she had.  How in the world the sunny bright woman with the simple and open heart came to be is beyond my kin.  After a while, when we knew we could count on each other until death do us part, we decided to get married.  It's the proper corporate thing to do.  

That was followed by fifteen years or so of smooth, smooth sailing featuring a lot of good times, laughter and warmth.

I thought that we were drifting apart.  Walls that were not there before, were.  Doubts, uncertainty, uneasiness.  Thats what I thought.  Then, like you first were able to describe it when you found words again, your brain blew up.  Poof.  Just like that.  I was there with you.  It took me hours to understand and react properly.  Lord knows how I wish I had reacted faster.  Twenty hours after the stroke happened I understood exactly what had happened to you and I was full of despair.  All of the uncertainty was gone.  I wanted you so badly it burned.  Such clarity I have not felt before or since.  I was going to do anything, anything I could.  You were gone!  Erased! Major brain damage.  Broca center destroyed.  Frontal lobe severe damage. Extensive left side damage.

She worked very, very hard for a long time.  I did too.  Daily for about three years. We did everything together as much as possible, weaving therapy into our daily activities.  I got a part time job, she came to work with me. She proved them wrong.  We had a lot of help.  I had Nicole back.  She suffers from aphasia.  She kicks the shit out of it mostly.  We make it fun.  We laugh at aphasia a lot. 

We sailed smooth again for almost a decade and then the world slowly began to change again.  Our roles are changing.  She is rising to the occasion brilliantly.  I feel bad that she has this added pressure.  I think she mostly feels like doing something nice for me.  I love her to bits. She makes me feel good, good, good.

It's Wed August 21st.  The CT scan took place late last Friday afternoon.  The whole thing from leaving my house to arriving back at my house took less than an hour.  Lucy, our neighbour took us there and back.  Written results take about three weeks to get back to The Dr.  He can call in for results anytime.  I decided to call June this morning to let her know I had been scanned but she is not in today and I really do not feel like starting to explain things to someone else.  So, we hold for June.  

I wish I could say I feel good, but, it would not be true.  I feel rather without hope today.  I am powerless to effect the things I must.  I find it hard to avoid bitterness and negative thoughts about both myself and the people I thought were our friends.  We are abandoned.  Dying and going broke are real surefire ways to build relationships.  Today I get to watch a bank loan bounce for the second month in a row.  Friday I will watch my mortgage bounce.  Next week, next week.  We don't expect anybody to fix our problems, they are ours.  Not being erased from your memories would be nice, though.  A touch, a call.  I am not dead, yet.

Thursday, 15 August 2013

I finally got the call for the CT scan early this morning.  Scheduled for 5:00 tomorrow afternoon.  A very odd time, they are normally closed.  Happy days.  I think squeaky wheel with charming unforgettable personality is what it takes, sometimes.  June of The Dr. is an angel.  

So, as they told me back at the end of winter, even before spring had sprung, hang on and sit tight, nothing much is going to happen this summer.  Summer has just about come and gone, now.  We'll find out more about the cancer in a couple of weeks, probably faster if the results are not as expected.  I have not had any of the anticipated symptoms of lung cancer as far as I can tell.  Radiation is next up, and hopefully The Dr. will finally put his blessing on a final draft of his application for my lung transplant.  If it is not to be I want to know that, too.  

I took a long walk this morning, by myself.  I have not gone out by myself in a couple of months.  A stroll up Cedar St. and up to where the bridge goes to Ille Bizard.  I walked west a couple of streets and then turned back towards home.  A little dollar store stop for some bread loaf tins and I walked home.  My pace was very slow, I stopped often to catch my breath.  Whenever I found myself drifting out of the moment I pulled myself back.  I was strong enough to focus on the flowers and the trees and the gentle breeze on a perfect day.  No internal dialogue replaying endlessly things I cannot change.  It was a most lovely walk.  

I am ok.

Wednesday, 14 August 2013

I was up early this morning.  This is the day.  I have no more patience.  I left a message with June yesterday, and I found The Dr.'s fax number and sent a pleading fax to him directly.  At 8:00 AM I will call and make it clear that I am not going away until I get my scan and all the rest.  I cannot take it anymore and stay sane, if indeed I still am.  

Dying is taboo.  Watch them fall over themselves as they scurry away.  

I cannot afford to fix my used car and keep it running.  Taxes on my house are two years behind.  Answering the phone is a touchy thing.  I can't bring myself to deal with anything. I have said nothing to anyone, yet.  I cannot lose my house!  It's for Nicole's retirement.  She is going to live a long time still.  We cannot live cheaper somewhere else than we can here.  This is scary.  

Nicole, I love her so much!  It breaks my heart to watch her watch me.  It is hell.  She wishes she was not aphasic so she could do more for me.  As if.  She is everything.  I am so hard on her.  I have to constantly challenge her, make her work hard mentally.  

Before The Dr. said transplant it was all so simple.  I had an incurable lung disease.   I would have been dead before the cancer ate me up. I had come to terms with that.  Now, my world is upside down.  Anxiety courses through me.  I think about what I am signing on for and wonder if it's what I really want.  

Tuesday, 13 August 2013

Still no word from the hospital or The Dr. about my CT scan which is now very late.  My messages to The Dr. are not returned. The Dr.'s office appears unable or unwilling to do anything beyond sending faxes to the hospital.  I am beyond disappointed.  I guess being nice and patient gets you fucked over.  If I go nuts on them I will get fucked over.  Go sit over there and die.

Monday, 5 August 2013

This post is mostly aimed at my family, friends and acquaintances, people who know me in real life.  Not too long ago, a very close friend, who happens to be an excellent writer, told me I should have started this blog anonymously.  There have been many days that I agreed with her entirely.  Oddly, getting naked with strangers is a lot easier than getting naked with friends and family.  I did not think of that when I started. 

Pride is a powerful sin, indeed.  I avoid writing about my loneliness because I do not want you to needlessly worry about me.  I do not write about my isolation because I do not want your pity.  I have avoided writing about my fears, my pain, my sadness because I love you and I am strong enough to shoulder my own burden, I do not want to trouble you anymore than I already have.  

I do not have any progeny.  I will leave nothing behind other than memories and they will fade.  I need to leave something to show I was here, that I was alive!  This is my feeble attempt.

I am going to let it all go and just write without fear of offense, or pain, or slights caused.  Please forgive me, I have to do it.  I love you all.


I read this again a few minutes after posting.  I amuse myself sometimes at just how easily I can trick myself into looking away from something I really ought to see about myself.  Really, the last paragraph needed to say "without fear that you will disapprove of me, my actions or my feelings".  It's my ego that has to be overcome! 

Sunday, 4 August 2013

The timeline of my disease is a little bit fuzzy to me.  When my mother came to live with us about ten years ago one of the first things we had to do was get her set up with a pneumologist.  She had been living in Rawdon and attending the hospital in Joliette. The Dr. Two (my family Dr.) arranged for her to see The Dr..(pneumologist for both my mother and I)  For a couple of years I took my mom regularly to her appointments and I got to know The Dr. a little.  I did not like him.  He was cold and indifferent towards my mother.  He offered her no hope.  Her inability, her refusal to stop smoking was a barrier between them that could never be breached.  She simply did not care about living, and he could no longer bear to watch indifferent, suffering patients who had given up on life, die on his watch.  I ended up on The Dr.'s patient list innocently enough.  I had recurring sinus infections most of my adult life, a couple or two every year, lots of prescriptions for antibiotics.  Sinus drained once, and only once!  The Dr. Two sent me for a PFT, along with other tests to see if she could figure out why so many infections, around 2003 or 2004.  She called me into her office a week or two after the PFT and told me I needed to see a pneumologist and sent me to see The Dr.  I can't say I was surprised.  I had gotten myself very fit in the 90's with bike riding.  I rode hard for exercise every day for three seasons of the year, for about five years.  I was lawn bowling a hundred games and more every summer as well, and I ran on the green instead of walking most of the time.  A year or two before being sent for the test I started to notice limits to how hard I could push myself, and I was feeling a general fatigue and malaise that I had not felt before.  When I saw him, The Dr. informed me that I had COPD, emphysema.  It was early days still.  I don't remember my numbers.  I think my mom and I saw The Dr. for about a year as patients at the same time before she died.  

I would like to say that I immediately stopped smoking.  I really would.  I wish I could.  I should have, I really should have. Instead, I did the off/on/mooch/chew gum thing for a couple or few years.  It is rather shameful to remember my rationalizations.  I could say that addiction is a bitch but that would be just so much horse puckey.  In a past life I threw off cocaine and heroin addictions as if I had a cold when it was time.  No problem.  Decided it was time to stop, I stopped.  This was a little different.  Smoking now was playing dice with my life, officially.  I no longer smoked my pack a day.  Some days and weeks I did not smoke at all.  I mooched whenever I had the chance.  I bought my smoker friends packs of cigarettes once in awhile to ensure I did not become too much of a pain in the ass.  

I don't know how many times over the last 30 years, maybe more, that as I lit a smoke I would wonder to myself, is this the one that will spark cancer?  Is this the one?  One of them, not so long ago, was the one.  I was not invulnerable.  It does not always happen to someone else.  Play with fire and you get burned.  

Friday, 2 August 2013

I wrote this about six weeks ago but I was afraid to post it.  My ego told me not to do it, not to show weakness or pain.  I am a little less afraid today to show myself.

I am my disease.

My disease shapes me.

I ignore, tune out pain.

From my first awareness in the morning until I fall asleep I have to control all of my breaths, all of my movements, all of my emotions.  I lose my breath otherwise, instantly.  I think about lifting an arm before I lift it.  Do I need to do this?  Is there a better way to do this?  Should I be inhaling or exhaling when I do it?  How hard should I exhale and for how long?  When I move I have to stop and recover before the need is obvious, otherwise it could spiral into a breathing attack which could literally be fatal.  The pulmonary rehab training is second nature now.  I would be dead without it.  No doubt in my mind about that.

I do feel alone in some ways.  I think you ultimately die alone.  I want to share my unknown but known fate.  I want to know why I want to, as well.  I want to know why virtually no one wants to talk about death, especially when it is personal and up close.

I want to strip off the bullshit.

I like what Roger Ebert has to say about knowing the time frame of your death is not known but palpably close. "Many readers have informed me that it is a tragic and dreary business to go into death without faith. I don’t feel that way. “Faith” is neutral. All depends on what is believed in. I have no desire to live forever. The concept frightens me. I am 69, have had cancer, will die sooner than most of those reading this. That is in the nature of things. In my plans for life after death, I say, again with Whitman:"
I bequeath myself to the dirt to grow from the grass I love,
If you want me again look for me under your boot-soles.

More distressing news.  The bone density scan shows evidence of hip damage.  I will need to go see a rheumatologist, again.  The prednisone is clearly speeding up a genetic disposition towards osteoporosis.  I was diagnosed with degenerative disk disease in the lowest 3 vertebrae about six or seven years ago.  We elected to exercise and stay as fit as possible rather than treat it with drugs at that point.  I think I have to do something now, the pain is debilitating, severe at times.  The shoulder, neck whatever pain that drove me to The Dr. last week is probably related to skeletal issues.  I was sure I would be dead before I had to worry about the cost to be paid for the steroid use.  Considering that I have been on extremely low tapered doses of steroids tells me that I had better get ready for what is to come.  That will no doubt be more steroids.  Related to this is horrible, disfiguring cramps that I get in my hands, feet and calves.  The muscles knot up very tight instantly.  It hurts like hell.  I think it is related.

The medications, prednisone and symbicort and Spiriva all are contributing to a rapid decline in my vision.  I can't say exactly what the deficiency is.  I feel like I have less pixels by the day.

I am afraid of a lot of things.  I am afraid we will fail financially.  One straw will see us lose our house.  I cannot meet obligations.  I have no potential for new revenue that I can see.  I breathe deep.  Practice being in the moment.  Tell myself that it is not important right now if I am powerless to affect any meaningful change.  I am afraid that the plane crash that is my physical state will make me want to end my own life before my body completely wears out.  I am afraid that I am a drama queen and should suck it up and shut my mouth and get back to work.  

I wait.  The cancer grows.  In a month or two they will measure it.  A month or two after that they will tell me what is next.  My breath will decline.  I will manage.  I will enjoy.  I will not lend this kind of focus to my disease very often.  Sometimes, though, its a good thing to do, and then move on to a flower or a cat, or making something new in the kitchen. 

Every day is a good day.  I find joy most certainly in every single waking hour.  I laugh many, many times a day.  Nicole is cheerful and always joyful.  The cats are something I spend hours with every day.  I don't think much about tomorrow.  Tomorrow is when I very well might die.