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.

I am very tired this morning.  We spent the afternoon yesterday at Beaconsfield Lawn Bowling Club (BLBC).  It's open house weekend at the club and we always make it a point to go and see if we can help nab some new bowlers.  We got there early before anyone else and went right outside to see how it would feel.  The green is in tremendous condition for this time of year and that is really good to see, it bodes well for a good season.  Like usual, my first shots were spot on as if I had been practicing all winter.  That always sets the hook and causes me to feel like I still got "it".  I probably never had "it" to begin with, but that's not the point, is it?  Playing was hard.  The acts of picking up my bowl, focusing, going through my pre shot routine and execution of the shot leaves me breathless at the end. If I am going to play for real at all I need to get recovered quickly, half a minute at the most, in time for my next shot.  I imagine that I will be able to play in the Men's Provincial Championships with my men's fours team.  That will only require me to make two shots per end walk the length of the green a maximum of four times per end, more likely two or three times.  The tournament will be short, a few games at the most, in the evening.  This will be my last competitive play with these old worn out lungs.    I only hope I do not embarrass myself too much and that the guys I am taking will gain something from playing with me and the experience of trying to get to a National Championship.

It felt like going home yesterday.  A lot of people at BLBC know what is going on with me, I am obviously not trying to keep it a secret!  It felt a little odd, but a lot nice to enjoy the love and kindness I felt.  It was a bit overwhelming.  Since I made the decision to stay on the executive for the season I have had second thoughts.  I changed my mind and resigned yesterday.  It is the best thing for both BLBC and me.  Now I just have to play for fun and work with a couple of ladies who are showing some exceptional skills.  Should be fun.

No news from medical stuff this week.  I did the blood work last Monday, delivered more urine than I thought my body could possibly produce in twenty four hours and did the bone density x rays.  On top of that they got the CT scan, PET scan and the echocardiogram.  I am learning to be patient  I can see I am fast tracked at every turn now.  There is no chance I am going to fall through any cracks in the system.  I am damned sure of that.  I sat with my friend Barbara Armbruster who is on the board of directors at the Lakeshore General Hospital for a while yesterday and we talked about my mostly positive experiences at her hospital.  She was happy to have a conversation where she was not being called to task on something.  I do not miss an opportunity to further my cause. I don't know for sure when the phone will ring, or who it will be.  I don't even have an appointment with anyone.  I did start taking prednisone yesterday.  I made the right decision, I think.  I feel stronger already.

I continue to surprise myself at my lack of outright terror at having cancer.  When I was chatting with Barbara yesterday she told me a funny story about a guy who was told point blank by a Dr. not to worry at all about the newly discovered cancer because he would be dead from other causes well before that devoured him.  It was funny but you probably had to be there to appreciate the joke fully.  I think that sort of sums up how I feel about this minute fart of an excuse for cancer.

I wrote this last night.  When I did a read through it was so incoherent that I figured it best to have another look at it in the morning and clean it up.  This is the somewhat less incoherent version.

I felt really good today physically, still do this evening.  I have not been taking prednisone for a week. The feeling good is courtesy of my own body.  I have not felt this good since Boxing Day.  Feeling good does not give me more breath, but it does help me keep good breathing rhythm and pace.  When you feel good it's easier to remember to exhale with pursed lips and blow out for longer than your air intake.  You know if bending down to do this or lifting something up over your head requires breathing in or breathing out.  You breathe in air through your nose, you breathe out slowly with pursed lips, and with some force, as if you were blowing up a balloon.  On a really good day this all comes together without conscious effort.  I can walk up the 12 stairs from my basement without stopping, and arrive at the top fresh, no need to rest and recover my breath.  Nicole laughs at me and calls me "silly goose" on good days when I get breathless because I forget I have this little breathing problem.  Those are good days, indeed.  Today was one of them.

I saw my family physician, who shall be called The Dr,Too, last Friday.  Nicole had an appointment and I tagged along.  The Dr,Too always invites me in when Nicole has an appointment.  This is a vestige of the days when Nicole's aphasia was debilitating, a dozen years ago when I provided translation services.  Lately I get called in to keep her up to date on my situation.  Nicole had an outstanding, glowing report.  She is fit as a fiddle, as they say.  There is a lot of gentle humour and poking fun all around when we sit down with The Dr,Too.  Always.  Attention turned to me. When I finished briefing The Dr. Too in my best citizen scientist mode regarding my current medical condition, she let me know in no uncertain terms she would be there to help in any way she can.  It's not so much that she said the right things, but how she said them.  She will get all the reports and watch out for me, holistically.  The Dr. Too, as much as a Dr. can be, is our friend, like family.  We met her a dozen years ago, she was to be part of Nicole's post stroke rehab team.  The conductor.  She took and continues to take real time to get to know us as people, about our lives, she guides us through the health maze with brilliance. I consider myself fortunate as hell to have almost immediate access to The Dr. Too.  Maximum we wait to see her (not counting weekends) is two days.  When she is on holiday another Dr. is available if needed. We have a great family Dr.  Having a family Dr. willing to work with the transplant center is one of the prerequisites to getting listed.  It is a big deal here in Quebec to have a quality Family Physician.  We lucked out.

I want to do a blog, start to finish, from:  Hey, I think I might have a  lung transplant all the way to a funny obit written by bowling buds, say, thirty two years after said transplant.  The idea is: Russell is getting a lung transplant.  Transplant technology has come a long way, there are a lot of new developments.  Being a part of that would be exciting and meaningful.  I might have something interesting and  useful to offer.  The Transplant story blog, as it stands, blog wise, blows.  I would usually say sucks for a poor effort, but this is the result of  no effort.  It needs to be organized.  I need to be edited, thought provoked.  Stuff has to be thought upon.  Any ideas?  Say hi.  Ask a question.  Like Captain Picard said, Engage.

Yesterday, The DR. himself called me around lunchtime.  That was a first.  The call was in response to a message I had left a day or two earlier when I thought I had an chest infection starting that required I take my action plan antibiotics.  I was not sure if I should stop the daily 250 mg of azithromycin or not.  Taking antibiotics too often is not good, my symptoms were not severe, so I was fine waiting a day or two for good advice from The DR.  By the time we spoke I felt I probably did not need to start the action plan.  He agreed.  I told him about having already had the echo cardiogram that very morning and he seemed pleased.  Very reassuring to have The DR. take time to call me himself.  A small touch that reassures me a great deal.

I don`t feel right, my chest as best as I can describe it, feels warm but everything else is ok.  Tomorrow Nicole has an appointment with our family Dr.  Whenever either of us have an appointment with her the other ends up having one, too. She has been our family Dr. for about 13 years, since Nicole`s stroke rehab people lined us up with her.  We love her.  Lately my stories have been interesting.  Little things like lung transplant.  She hasn`t heard about cancer yet.  We normally laugh our collective asses off during a consultation.  Friday will be fun, at least.