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.

I panicked about the shoulder, neck, chest pain whatever it is.  My imagination ran away with me over the weekend and into Monday.  There was just no way it could be just muscle pain, or so I ended up convincing myself.  Cancer was eating me in a general way, just like it did my friend Don. I decided Sunday night that I would call The Dr. in the morning, which I did, early.  June listened to what at least to me was the voice of reason explain why I was calling and she assured me that she would speak to The Dr. and get back to me.  She returned the call promptly to tell me that The Dr. suggested that I go see my family Dr about the pain.  I was rather stunned at that.  Here I am, cancer and all that, and I am going to go work on a referral for muscle pain.  I did stay polite but firm that I was not going to go see my family Dr.  June told me that The Dr. had a big patient load, had to get to the Jewish later and that the day was not a good one but she would see what she could do.  At this point I really just wanted him to know about it, seeing him was not important.  She called back a few minutes later and told me to come in right away and he would find some time for me.  I waited for about an hour to see him once I got there.  He was so busy I felt awful about being there.  He went through my pain symptoms with me and had no conclusion save one.  The growth that was discovered a couple of months ago was not doing it.  I realized in an instant that I had let myself freak out about cancer.  It's not so surprising, really.  It won't happen again, hopefully.  I told him I would manage the pain on my own.  It is still nasty painful this evening but it's muscle pain, garden variety middle age muscle pain.

The Dr. told me that nothing is going to happen regarding the transplant application until the second CT scan is done sometime in July or August.  A full PFT (pulmonary function test) also has to be done for the application.  June called to tell me that both requests were made to the Lakeshore hospital and so I go back to waiting.  I have lots of repeats on my breathing meds and action plan antibiotics and two more tapered prednisone prescriptions ready when I need them. With a bit of luck I will not be seeing a Dr. for a month or two.  I finished the last day of prednisone yesterday.  The last couple of times I lasted two weeks before starting again.  I hope I do better this time.

All of a sudden a persistent pain in my left shoulder neck area radiating down has me worried.  I have never had a muscle or shoulder problem on my left.  The last couple of weeks it has felt like I strained my left shoulder.  I thought maybe I slept funny on it, or the freezing in place of the CT scan or PET scan left a muscle in that area knotted up.  I know all about what it could mean but it was more of a discomfort than pain, so I kept it in the back of my mind.  For the last few hours it's not discomfort anymore.  It hurts like hell, no position brings relief, moving, sitting, does not matter.  222's do not make a dent.  Multiple cookies is dulling it somewhat but not enough.  I will call The Dr. in the morning.