Thursday, 30 May 2013

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.

Tuesday, 28 May 2013

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.

Sunday, 19 May 2013

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.

Monday, 13 May 2013

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.

Thursday, 9 May 2013

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.

Wednesday, 8 May 2013

It feels like a long, long time since last Friday and the meeting with The DR.  (I am going to ask permission to use names) I came home remarkably calm considering the fact I do, or at least we are operating as if I do have a teeny tiny turtle paced lung cancer.  My application for a lung transplant is for real and I have The DR. and his colleagues on top of the cancer.  They don't sent those applications out lightly.  For now we ignore cancer.  Does not exist in my world.

I took Friday, Saturday and Sunday off.   I ate a lot of my special cookies, watched hockey, played with the cats, laughed with Nicole.  Nicole is super cool with everything right now.  All she wants is to have a shot at the lung transplant.  Anything to keep me longer.

Monday morning real life intervened in the guise of a Beaconsfield Lawn Bowling Club executive meeting.   I needed to attend to let my friends know what was happening to me and that my ability to do my job as Greens Chairperson might be in jeopardy.  They were so wonderful.  I have been on the exec for almost ten years and the club is a central part of both my and Nicole's life.  I have lived and breathed lawn bowls for the last 20 years, most of them at this club.   They asked what I wanted to do.  I told them I want to drag my sorry ass around the green until I can't anymore, and then some buddies can drag me some more.  I am going to keep my job.I did not go to the hospital to schedule tests.  I figured tomorrow.

I went to Lakeshore to schedule the echo cardiogram.  There is a six month wait for the test.  My requisition had The DR.'s name with URGENT FOR TRANSPLANT EVAL on it.  A little huddled meeting and I had an appointment for the next morning at 7:00.  I was mighty impressed.  Transplant seems to carry some weight.

The echo cardiogram was really interesting.  Afterwards I had a consultation with the cardiologist that lasted all of 10 seconds.  She smiled and said "the transplant guys are going to really like your heart".  Oh my, she made my day!  My week!  My month!  Seems everything is perfecto.  The test itself took about 40 minutes and was a lot more involved than I had expected.  The technician, Christine, was a pro with a good attitude and was willing to answer my numerous questions.  I watched the whole thing.  I had a feeling things were good.  All the round holes looked nice and even.  I was amazed at the number of measurements she took.  Hundreds of data points.  really impressive, and, non invasive.  Nobody poking me with nothing.  I liked that part.

Next up a 24 hour collection of pee.  Pee before poo so you don't lose any.  I screwed up today, plus I forgot to take a container with me to the hospital.  Sure, I wont need to go between 6:30 when I left the house until 9:30 when I got home.  Uh huh.  Sure.  I will get that done next  Monday, the next possible day I can.

I called The DR. yesterday because I was coughing up some stuff which was an alarming colour.  I needed advice on what to do.  Since I started taking an antibiotic every day I have not had to resort to my action plan antibiotics.  Now I think I might have to do that but I am unsure of if I stop the daily one or not.  Don't know.  We did not discuss that.  As it is, I am no longer honking up green but I still feel a bit hot in the chest.  So, when The DR. calls I will get that straight.  I stopped prednisone last week and I am going to try to stay off it for another week or so, at least, if I can.

Nice sunny warm day.  I am going to take advantage of it.


Friday, 3 May 2013

I have the results of the PET scan finally and I probably do have a small non virulent cancerous nodule on the top of my left lung.  Non virulent because of the thermal signature of the nodule and cancerous because of the irregular, jagged edges of the nodule.  The Dr. conferred with colleagues at the Jewish General and the course of action is to monitor the growth for now.  Another CT scan in July.  In the meantime, oh joy, my lung transplant application process is now back on track.  The Dr. does not know how this probable cancer diagnosis will affect my suitability for transplant consideration and listing.  Normally a biopsy of my lung would be done but any surgery is too risky says the Dr. and his Dr. friends, my lungs would surely collapse.  So, for now we are going to keep our eye on it and kind of pretend we are not thinking about it.  If at some point the cancer has to be treated there are some new localized types of radiation therapy might be useful.

I have a battery of tests to do now, in the next couple of weeks, echo cardiograms, all kinds of blood work, 24 hr urine tests and lots more. The cool part is they are all related to positioning myself as a lung transplant candidate.  So, back on the treadmill, back on the green, back to work.  I have a road to travel now.  I know where I am going.     I am not in any imminent danger of being consumed.

Nobody could look at me at say "that guy is ill".  I look fit, slim.  I don't have oxygen lines hanging around my neck.  You would never know I am missing more than 80% of the lung capacity I used to have by talking to me or having a meeting with me.  That sometimes makes me feel quite odd in some situations.  I never quite know what to say when someone comments about how I must not really be THAT ill.

I have a lot to digest.  Nicole is very happy.  She calls it cancer lite or something like that.   She heard me ask the Dr. about calcium supplements and liked that I was thinking long term regarding bone loss and prednisone.  Last year something that was going to affect me in ten years was a bit of a joke as far as I was concerned.  Today I had concerns about ten years from now.  Deluded or not?  NOT.    Enough for now.  I want two cookies and a large cold weissbier.
Friday morning.  My heart is pounding.  For the first time since this started I am afraid.  Almost time to go.

Wednesday, 1 May 2013

June, from the Dr. called me mid morning Monday in a friendly and familiar way, asking me to join the Dr. in a meeting on Friday at 11:00 AM.  I have not thought much about cancer since I last posted though it has obviously been in the back of my mind.  It will be good to have a direction after the meeting on Friday, to know what I have to do next.  If by some awful chance I have to deal with the unthinkable this summer there are things I have to do soon, resignations to make, decisions to take.  Transplant route is far more conducive to my normal summer life.  I can stay active at my lawn bowling club.  I can coach a little, drink some beers and shoot the shit with the old gang.  

I started taking prednisone, again, late last week.  I wont bother with the details but I basically felt drained, exhausted, aching, suffocated with no reserves available.  Two hours after 40 mg of prednisone I started to feel better.  Next morning felt good.  Walk a flight of stairs without pause.  Second morning, Super Man, no more aches and pains of any kind.

Spring has sprung here.  Today is summer like.  Life outside has begun at last.