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.  

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. 

It is the last day of July and I do not have a CT scan appointment.  I am not very happy about this at all.  I don't know what I will do tomorrow, but losing my cool is not on the menu.  Causing a ruckus and getting on with stuff is.  I have been sitting patiently since mid March with cancer in my lung.  Nothing has happened cancer therapy wise.  This is still semi ok.  The Dr. wanted to have a pic via CT of how the cancer is doing for end July.  That time frame suited his and my purposes vis a vis getting appropriate therapy going for the cancer and proceeding, finally, with the transplant application.  We are not really late, yet. Tomorrow we will be late.

I try to imagine explaining this blog to my father.  I often do that with questions that come up in my life.  This blog would have horrified him, at least initially.  Where we came from you did not discuss your personal issues with others, especially strangers.  You did not burden anyone other than your most immediate surrounding family with any of your health issues, and you tried to avoid discussion with them if you could.   That is the world I come from, a tough culture of strong people, old school, working people.  

I wonder, entirely too much I am sure, about what my friends and family make of this blog so far.  Throwing out my innermost thoughts for consideration, making obvious my many mortal character flaws and shabbily built intellectual foundations to strangers is one thing.  Doing it for people who know me now, or knew me then is far more scary.  That takes a big leap of faith.  Most people have an image of a person in their minds.  A snapshot.  Fixed.  Even if they know you now, they have this image in their minds.  It's natural.  You stay in each others lives, but you don't really follow all the details.  The image you have is the image you have.  

I have not done any of the things I should have done to plan for my death.  I should.  I will.  All the little things I should not leave to Nicole.

My breathing is bad now no matter how you want to look at it.  I am short of breath at rest all the time.  I keep moving all day.  Slow, slow laboured movement.  Everything controlled.  I stay as fit as I can.  It takes hours to do things that used to take me minutes.  I walk up and down those 12 stairs 20 times a day.  I laugh with Nicole and with the cats.  I Google + a lot on and off throughout the day and evening and that keeps my brain active.  I eat cannabis cookies all day long.  I struggle to breathe too much if I do not.  Cookies ease the tension, the stress of suffocating.  Suffocating sucks.

I think differently than I used to about myself.  Getting to a core understanding of what my motivations, catalysts and other unconscious issues are is a little less important than it has been through my life.  I spent a lifetime starring at my navel, looking inward.  The long search for the "why" about who and what I am will not come to a nice neat conclusion as I long dreamed it would. The point now, is to let go.  

I saw The Dr. last Monday.  The Monday before, July 1 st, I had called and left a message asking The Dr. to send my pharmacy a script for prednisone.  He had given me a pred prescription at the end of May, with two repeats.  I had gone through those, and the pharmacist had extended me another.  The time between pred bursts had shrunk to just days and it was pointless to suffer needlessly. I wrote last time about seeing a rheumatologist to deal with osteo and rheumatoid issues and The Dr. was not aware I had, so I was rightly expecting resistance to my pred binge.  June called me on Wed July 3rd to tell me to come in to see The Dr. about The Prednisone Prescriptions.  You can tell when June is telling you something in code, giving you a heads up.

  My spirits, my mindset, frame of mind has not been as positive as it has been for the last year.  The last month specifically I had, began to doubt that I could ever have a transplant because I have cancer.  That doubt turned into a certainty as I researched deeper and found many jurisdictions where any type of cancer, anytime, cured or not would disqualify you for any kind of transplant.  The most liberal places allowed for it but only in situations where the patient had been cancer free for a period of five years.   I have been worried that I might fall into a depression.  Depression has been far away from me for a long time now, the better part of a decade.  I really do not want to experience that while either fighting for my life through a transplant or living a meaningful death if I am told I can't have one.  I think just recognizing the dangerous times and old feelings will be enough to avoid the blackness.  I hope.  I hope.

The visit with The Dr. was as positive as could be.  Having time to prepare meant I was able to ask my all of my questions.  I was a little worried that I would be negative with The Dr., difficult to deal with.  I was not and The Dr. was as forthright as I could have hoped.  He also had a lot of questions about what I was doing, how I was feeling, how much I was exercising and my state of mind.  We discussed prednisone, the pros and cons, the new meds from the rheumatologist that will counter the pred and my genetic predispositions.  I asked him straight up if having cancer precluded me from having a lung transplant here in Quebec.  The answer of course was not so simple, but it was honest and acceptable.  My cancer is small, slow, not virulent as these things go.  That is what The Dr. and his friends at the Jewish saw in April.  If that is what they see again when I have the CT scan ( not yet bloody scheduled!) in the next week or so then The Dr. says the following will take place;  I will start a cell level targeted nuclear medicine therapy at the Jewish, and, The Dr. will finally sign off on my lung transplant application at Notre Dame Hospital.  I think if I have those three things done in the next six weeks or so I will be satisfied.  The Dr. emphasized, again, that I have no surgical options for the cancer.  Nor do I have any surgical options, period.  We discussed the PFT test that I had last month at the Lakeshore.  Of course there was no miraculous increase in my capacities, that sort of shit does not happen in real life lung disease.  On a positive (?) note, the numbers continue to fall and my survival prognosis is firmly in the 50% 2 years, meaning that I have a 50% chance of being alive in 2 years.  You need that number or less for a transplant, so it does have a sunny side.    At the end of the discussion The Dr. and I, along with Nicole, decided that regular prednisone was worth a try.  15 mg daily.  I am a week in with that as of tomorrow and I feel very good.  

I will post this now.  More to come.

The PFT went well.  The technician, Sylvie, also administered my last pulmonary function test at the Lakeshore in 2009.  She is really good at what she does, meaning that she understands the stress she puts my body under and is cautious about pushing me too far or too fast to get quantifiable results for The Dr..  She had checked her notes and she knew I was having the PFT to submit with the lung transplant application as a benchmark.  The test is conducted with you in a glass booth and the technician monitoring your breathing and cardio info in real time.  A lot of it the measurements they want are done while you fill and then empty your lungs as forcefully and quickly as you can.  From a patients point of view, other than all of the tubes, hose in your mouth, arm cuffs and the fact you are in a glass booth, it is basicly a spirometry test at the Dr's office but a little more high tech.  Last year at the Lakeshore I exhaled forcefully right into unconsciousness, twice.  I was lucky, my lungs did not collapse. and I felt myself going and I instinctively tried to roll on a shoulder. Nicole and the technician administering the test got me sitting up on the floor against a wall, the Dr. and a nurse checked me out and I was ok. vitals wise.  I did not want to go to emergency or pursue it further.  They did not make a note in my chart.  I checked later.  That fact bothers me a lot.  I passed out because I was, and am still strong enough to use my abdominal muscles along with the weaker chest and rib cage ones to crush the air out of my lungs in an instant, if I use all my force.  That is not something that the average person can do.  The technician did not know that.  She had never administered the PFT to someone who had a combination of extremely low lung function with the musculature of an athlete.  When I heard her coaching me " harder, harder, faster, faster, blow blow blow blow, well, I did.  Poof.  Out like a light.  It happened again, almost, last year when I was going to rehab.  Luckily at that time I knew what could happen and I held back a little, just catching myself starting to black out.  This time though, she was a pro.  The hardest part was getting valid readings.  My lung function is so poor that I can barely generate a measurable response.  She was able to anticipate when I was going too far, too fast and I got to trust her.  Between the two of us we were able to get The Dr. the data he needs for the transplant people.  We had a chance to talk between takes and I am so glad we did.  There was a lot of personal vindication in her words, for me.  She told me that in all the years of her doing her job she had never encountered anyone with the degree of lung illness I have who is as fit as I am.  She said I was in total control of myself and the space around me.  Zen master athlete.  She said it.  Oh my how good that feels.  I work very, very hard virtually every minute of every day to be what I have to be in order to avoid anxiety, stress, fear.  Suffocation, right now, permanent with a prognosis worsening until a miserable death. The fear of those things work very, very hard against me.  I don't sucumb to anxiety or fear of dying.  I am able to breathe enough.  I control everything, every little movement of a finger.  I get to my car and unlock the door and I might pause for a few seconds just stand in place before I sit down,  I might close my eyes mid sentence in a reply to you for a little while before carrying on.  If you try to get my attention when I withdraw to recover or avoid a breathing attack you will be ignored, I will not be aware of you at all.  With determination, and I cannot stress enough, proper rehab and training, anybody could do what I do.  That said, I was glad for the recognition Sylvie had for my effort.  It is not a small effort.  I give the effort that someone training for the olympics gives.  I know I do because I was fortunate enough to have had daily contact with a man, Doug Anakin, my gym teacher and multi sport coach, who was an olympian and was a mentor to me when I was a teenager.  I learned a lot and remembered everything.  "Walk towards the pain that's where there is gain" and many other sweet sayings get my ass out of bed at the same time most mornings and I go to work.   I go to work building me.  Making me strong.  Making me simple.  Making me happy.

Today I had a consultation with a rheumatologist that I had first seen about four years ago.  He is a young guy who really comes across as very sharp.  He was able to use his laptop to get into Lakeshore to get my bone density and blood tests.  That was rather neat.  He took a good half hour listening and making notes asking questions.  He told me "no problem" that we would be able to get a handle on bone damage.  I do have osteoporosis, a shot left hip,  a couple of crumbly discs and a few other assorted bone things.  Really, this all does not add up to too much.  If it was not for the lung disease I think I would be able to see him and take the calcium and other builders and run half marathons in a year.   So, as he pointed out, "we will manage your bones with you taking steroids".  Steroids are my friends.  Steroids are life givers.  There never will be getting away from steroids for me, transplant or no transplant.  At this point there no longer is an acceptable quality of life without regular doses of prednisone.

Tomorrow morning I have a pulmonary function test at the Lakeshore Hospital.  This is, The Dr. says, necessary for the lung transplant application.  They are tests I have had a number of times.  Nothing special to do to prepare for them.  Well, she did say no smoking when confirming my appointment.  No problem.  The next important test is a CT scan to measure that thing growing, or hopefully not growing. on my lung.  The Dr. wanted that done in July.  I have not heard from the hospital yet.  I will call The Dr, at the end of this week if I have not heard from them.  I want that done.  I want the transplant application to move ahead.  I want to know if and when a lung transplant is ruled out.

I went to see my family Dr. on Monday in order to get referrals to a rheumatologist I saw last in 2009 and an opthamologist who sent me for cataract surgery in 2011.  The rheumatologist wanted a new referral and I could not for the life of me remember or find anything to tell me who had seen me about the cataracts.  I really did not want to deal with bone issues but the pain cannot be ignored.  The steroids are doing bad stuff to my bones and I need the steroids to live every day.  So, next Monday and Thursday I see those two Dr.'s and see what help that might bring.

I try not to think very much about the future or all of the things outside of my control.   I will write more about what I feel in the near future.