Saturday, 28 December 2013

Year end thoughts

It is Saturday today.  I went to the Jewish General on Tuesday to see my new Dr., The Dr. A.  He has some good reviews and some bad ones on webmd.  After one visit I could not like him more.  I started feeling stronger on Christmas day, and stronger still each day after.  I feel quite good today.  I am very relaxed.  It came to me on Thursday that this part of my struggle is over.  I don't have to fight anymore for a lung transplant evaluation.  It's been arranged by The Dr. A.

2013 started a lot like 2012 finished up.  The Dr. was still on medical leave, my primary pulmonary care was provided by Dr. Y.  I detested her for her complete lack of empathy as well as her harsh manner.  That said, I probably was a lousy patient.  She did send me for a second stint at pulmonary rehab at Mount Sinai. I don't think I would have made it this far without it.  I owe her that.  At the end of last year, boxing day, I caught something that lingered for months, leaving me worn out.  Nicole and I were coming to terms with my situation.  Our discussions centered around living for the moment and planning for the end.  I was and still am determined not to have a lingering,slow, death by a thousand cuts that emphysema normally brings.  We were good with everything.  J of The Dr. called me sometime in January 2013 to tell me The Dr. was resuming his practice.  The fix was in Doctor wise.  As much as I did not like Dr. Y., I did not trust The Dr. after being abandoned earlier.  I had no choice in the matter.  Much as I tried I had been assigned The Dr., and that was that.

During my first meeting after his medical leave of over a year, on March 3, 2013, I asked The Dr. if there were any extraordinary surgical measures that could be taken to help me live longer.  I asked simply because it was important to my peace of mind.  I expected the answer to be no.  I was good with no.  I had no idea what I was actually doing other than dutifully checking that out before I returned home to expire.  He said, "yes, you qualify for a lung transplant, you meet the criteria".  

The rest was war, a year of struggle, of fighting for everything, constantly every step of the way.  I was sorely tested, often.

Then, like magic, at the tail end of 2013 everything seemed to change.  Everything fell into place, seemingly.  I went from lost to found in a matter of weeks.  I have a team of caregivers at one of the best hospitals in the world.  I don't think I have to fight so hard not to get lost in the shuffle.  My transplant eval at Notre Dame is coming.  The surgeons know my name.  My cancer is being monitored.  I feel better physically than I dared dream even a week ago.  The new normal is ok!  

I love my life.  I love how I see.  I love who I am becoming.  This hope thing is not so bad.  Let's see where it takes me.   

Tuesday, 24 December 2013

A very good day

I met Dr. A. this morning at the Jewish General Hospital.  I had my full chart with me.  He spent over an hour with me and Nicole methodically going through the chart, his own work up and the networked information he had available to him.  At one point I mentioned that I had been through the Mount Sinai  Pulmonary Rehab program.  He left the room for a moment and returned with Ester.  We recognized each other right away with big smiles.  She is my contact person with the pulmonary and cancer people at the Jewish as of now.  I call or email her with anything, anytime.  She has instant access to the Doctors.  All of my prescriptions were renewed.  Dr. A. says we will modify things as we go along but for now we leave things as they were, drug wise.  He agreed that I had to know if a transplant is possible ASAP.  He forwarded the department head at Notre Dame a consultation request, by email, phone and fax.  While I was sitting there.  Pinch.  

It's the holidays.  I better relax and let it happen naturally now.  Might be a couple of weeks, but, I am to have my answer.  I will know not so long from now.  

I am exhausted.  I am very lucky.  

Merry Christmas!  

Monday, 23 December 2013

Big day tomorrow

Feeling quite odd this morning.  Lightheaded, spacey even.  Time and place do not sync.  Out of time and place.  In about 24 hrs I meet the new pneumologist.  Going to the hospital on Christmas Eve.  I have to call Wayne later and remind him.  I have to remember that I am driving this thing, that I am making this happen.  I am not powerless, yet.  I am not just a passenger.  This is my life, still.  Hospital on Christmas Eve.  Must be something serious, huh? 

Nicole went shopping with Roger, an old cherished lawn bowling bud.  Younger than us even.  I decided to stay home.  I did not want to take the risk of pushing myself too hard.  While I will not say I am forevermore housebound, I am for now.  We are stocking up today.  

I have no energy to spare.  I am laying very low.  Tomorrow with the new pneumologist I make a new plan.  After Christmas back on the treadmill.  Back to work getting stronger.  Hitting back.  Today, not.  

I feel Christmas this season as if I were a child again.  I am remembering and feeling it all over again.  All the magic and love.  I feel it this year all over again.  It is beautiful outside like a holiday card.  I am safe in my home.  I will stay safe in my home.  Christmas day with our family!  No worries or cares, they love us and will come fetch us.  I am blessed. 

I imagine I will want to write tomorrow after my meeting with the new pneumologist.  If I do not for some reason, Merry Christmas, Happy Holidays and Peace on Earth.  Love to all.

Saturday, 21 December 2013

Watching the snow fall and fall and fall..............

Yesterday +Georg Tirebiter mentioned to be cautious about allowing "my brain to write cheques that my body can't cash."  I had encountered the expression somewhere, sometime, but I never really thought about what it meant, being young and fit and immortal.  I recognized it immediately and knew exactly what he meant.  What made it interesting was how it was so perfect for the day. Yesterday was a landmark day, a day where the lesson of the day must be learned right now if I have intentions of living a little longer.  Even a month ago if I exerted too much, too fast, I could adjust, recover by using my breathing tricks and generally keep myself out of danger.  Yesterday I got caught three times severely out of breath and was on the edge of not being able to recover. I figure that is because my lung or lungs is/are close to collapsing before I am aware it is happening. While that is going on I can feel my heart overloaded and complaining. I can push myself into oblivion. I probably should actively avoid that.  Georg had impeccable timing with those words.  It might even be life rule # 1.

I wanted to do a bunch of different chores like vacuuming and tidying up so Nicole would be free to play with her Smuf village under the tree.  After the two hour wake up period where I eat and breathe all those prescriptions, have a tea and attempt to manage my body as it goes from sleep state to waking state, I know how I feel.  Normally when I decide to lay low for the day there is a certain amount of guilt.  Not today.  I stared the guilt down and beat it with a stick.  

I made some maple almond brittle today from an old Gourmet Magazine recipe from the mid 90's.  I found it online rather than sort through a dozen years worth of my old magazines.  It turned out better than ever.  I think experience counts with this recipe.  I think I have done it twenty times or more.  I toasted the slivered almonds perfectly, the candy boil was slow and spot on.  It is really good.  I also made shortbread dough.  It be chilling in the fridge.  Tomorrow I will made a few types of cookies that I like to make for Christmas.  I did what I could do, and what I wanted to do today.  My most amazing wife Nicole right beside me all the way.  It's all good.  It really is.

Friday, 20 December 2013

Accepting new limitations

On Friday morning Sugar had to go to the vet to deal with a paw problem.  Poor little thing was starting to hurt and I was sure it had become infected.  Nicole wanted to go and visit our neighbour Lucy who is in hospital at the moment.  I told Nicole I could call a taxi and take Sugar without any problem.  I believed it, too.  

As it turned out it was a problem, a big one.  I got into trouble getting into the taxi, getting into the vets office and getting back into my house from the taxi.  Edge of consciousness, lungs almost collapsed.  This is new, at least it is new in respect to how quickly and how thoroughly my body wants to shut down.  Is it an exacerbation?  I do have a sinus infection that is being treated with antibiotics and I do not particularly feel much in the way of symptoms from the infection right now.  It feels like the new normal.  I also have to remember I am on steroids for another week or so and that could be part of what I feel.  

I will have to back off somewhat, physically and be more realistic, be kinder to myself.     

Over the last year I have stripped off much of my ego.  It all has to go.  Ego blocks the light. Vain, pathetic, cowardly ego!  Ego is a self constructed prison. Ego tells me to write pretty lies, not to share, not to express my wonder and joy at what I am finding in these difficult times. My ego must die before I do.  Then there will be nothing but love and light, right here, right now.

A big ass Christmas present

We have had some big happenings in the last week or so.  We had gotten significantly behind in our municipal taxes, two years actually.  I had a plan but it got short circuited by my bank when they paid the arrears.  That was great in one way, but it meant that I had three months to come up with almost $6000, because our mortgage is up for renewal at the end of January.  We would not have survived a reapplication.  It had to be renewal and the arrears had to be cleared.  Well, we did it, with a little help from my Sister.  We did it mostly on our own, but without her help I would have come up short. I have the cash.  We will have our renewal, a very tiny monthly mortgage payment and the equity that is Nicole's nest egg is safe!  I feel really, really good about that.

What a Christmas present eh?  A farking house!!

Tuesday, 17 December 2013

A meeting with The Dr. Too this morning

I just got home from a long, emotional and fruitful meeting with The Dr. Too.  She heard me.  It took everything I have to get her to commit to helping me directly, right now.  At first she wanted time, a vacation starting in two days.  Then she wanted me to wait to see how things set up with the pneumologist I might have next month.  Questions about why The Dr. did this, did not do that, all kinds of tangential shite.  I had to push hard.  At one point I thought to myself ok, she is not going to get actively involved right now.  She sees obstacles everywhere.  Who do I call? Who will listen to me?  What can I do?  I told her I have no more time left. Days count now.  I asked for the chart back and started to get up to leave.  I was not angry but I was immoveable.  I think about then she heard me.  She understood and picked up the phone.  She came up with a plan, a good one that will get me an oncologist for my cancer right away, a pneumologist right away, and make Notre Dame aware of me right away.  

She got me an appointment tonite at the Jewish General!!  Tonite. I listened to the conversation.  She sold it so sweetly!  Told him the whole crazy story, enlisted him into her plan to get me back on the fast track, get my ass on the list before time runs out.  I hugged her so hard, told her how grateful I was.  She is going to call me later today.  She wants me to call her tomorrow to tell her what happens.  The Dr. Too will not stop, she will be fierce and relentless and will not quit.  Thank you The Dr. too. 

I will not quit.  I am not finished.  I have Dr. P. and perhaps Dr.L. to draft onto the team.   I'll be on the local news if I have to. There is no more time.  Hello world.  I am a very squeaky wheel right now.  Look at me.  Pay attention.  My life depends on you acting right now.  

I am excited about tonite.  I feel cared about and looked after.  I am pleased.

Monday, 16 December 2013

Today sucks

A foot and a half of new snow, -20 C.  The long winter has arrived.  I went to get my chart this morning and I managed to get to Wayne's warm car without having to take a breath.  

I got the chart and had a chat with J of The Dr. that left me very disappointed.  She gave me the phone number of a respirologist who is starting a new practice in January.  That's all folks.  She ain't got nothin for me.  Not Russell anymore either, back to Mr. McCarten.  I am supposed to be grateful and I bloody well am not. I told her, begged her to call Notre Dame for me and explain to curious circumstances, tell them The Dr. was done and ready to send it before he died.  For three fucking weeks it sat on the desk!!  If any of my messages had been responded to the fucking application would be at Notre Dame!!  After twenty calm minutes of questions trying to figure out what help she could get me to I got her to agree to actually pick up a fucking phone and call them. You know, like do something.  Tell them The Dr. died with a virtually complete lung transplant application of mine on his desk. Tell them you want to know who to get it to, how to get it to them, get me to the door. That was like pulling teeth.  To get her to agree that this made sense and was within her powers was heartbreaking and frustrating.  She said she would and then call me.  I really suspect that I have had my last conversation with J of The Dr.. I was polite, nice and spoke without cursing.

I have an appointment with The Dr. Too tomorrow morning to drop my chart on her and try to motivate her into making some calls. She will be a challenge as well.  She will squirm and wiggle and try to pass the buck to someone else.  I know this lady well.  

I am writing an email to Dr. P., my cardiologist asking him for his help.  I called and left a message for Dr. L., hopefully my new pneumologist.  When her receptionist calls I will try to get a call back from Dr. L. before I see her sometime in January.  Lung Transplant new Dr.  Lung transplant.  I want my phone to ring now, today, tomorrow, really soon.  I ain't got six weeks to waste.  No time to waste.

I am having more trouble than usual breathing today.  Stress.  I cannot tolerate stress.  I don't have stress when I know where I am going.  Right now, I am going nowhere, I have to change that, fix it, fix it fast!  I do not have time to waste, anymore.

I will settle down.  I remember that I can turn the stress off once I am satisfied I did what I could do to help myself, today.  Once I write that email to Dr. P. I should feel better.

I have not been well and going somewhat downhill for the last few days.  A painful dry cough, unproductive mostly that leaves my trachea burning.  Sputum started to look the wrong colour.  I decided to initiate my Action Plan.  I am on day 3 of 5 of avelox and a prednisone burst of 10 days.  I feel better, the bliss side of the prednisone is every ache and pain goes away.  The bad side is I have to watch that I don't become angry and hurtful.  Roid rage is real my friends.  

I do feel lost a bit.  I do feel all alone in terms of managing my health.  Nicole is a huge help of course. I worry I am kidding myself, that I never really had a chance at a lung transplant.  I was so blissful in my own little way last March.  I knew where I was going and I really had come to terms with how to live with an incurable and fatal condition, how to be happy.  Now I don't know if I should plan for a new life or go back to accepting and enjoying my remaining days.  Hell is where I am now.  I got to get out of this place. I need to know how this story ends.  I am not owed anything by life.  All I want is a chance to see the Dr.'s, the thoracic surgeons at Notre Dame.  Yes or no, it will not matter.  I will know where I am going.  I wont be in hell anymore. Please world, I won't ask for anything else.  OK?

While vetting my new pneumologist I found this Youtube vid of her dancing at Dancing with the Docs fund raiser last April.  Can't wait to meet her.  I found her email addy as well at McGill.  I shall introduce myself today.  Why wait for next month?

Wednesday, 11 December 2013

I had to write this morning, had to!

It's Wed. morning, almost noon.  Nicole is off on her volunteer work day at the seniors residence up the street.  I called J of The Dr. early this morning and spoke with her.  We talked about The Dr. for a few minutes.  I asked her if they were friends and she told me they were.  She held him in high regard both as a man and a physician.  I told her I understood why my file had not made it off the desk and why she had not called me back over the last few weeks.  She very clearly feels horrid about that.  She has contacted two pneumologists she knows well to take on my file.  I thanked her for that.  She says that we will get it done, we will get it to Notre Dame.  She promises.  I asked about getting my chart and explained that I wanted to also work on it on my own with The Dr. Too and she thought that was a good idea.  I will pick it up Monday next.  She seemed very confident that we will get to Notre Dame.  I believe her.  I told her I love her for all of her kindness over the years and especially because she is stepping up for me right now, in this moment of her profound grief and sadness. 

With Nicole out I am all alone.  I woke up in rather rough shape.  Bad cough, lots of sputum, burning chest, weakness all around.  Rough ragged breathing with wheezing.  Not great.  Few hours later now and its a lot better.  I have done nothing much, really.  I probably will not.  

How do I feel about where I am at in life?  I feel grateful I am not in pain, that my burden is not heavier than I can manage.  Numb.  I feel rather numb to it all actually.  I have become somewhat comfortable with death.  Death scares me less than a stroke that leaves me mentally incompetent does, or another episode like that of my second heart attack.  The thought of the pain that Nicole will suffer when I die is infinitely more troublesome to my peace of mind than that of my eventual demise.  Gone is any anxiousness due to worry about what is going to happen to me.  Will I, won't I, cancer, yes, no, maybe, what?  That does not mean I don't care.  I care a lot.  I will not though, stress about what I cannot control.  Right now I have done all that I can for today, and probably for the better part of a week.  So, no stressing about a future that does not belong to me.  Today belongs to me, and I have done all I can do today to influence and affect my fate, so we shall not ruin now over tomorrow.  It's like watching a movie that you do not know the end to.  You don't know what comes next.  Patience and assurance that I did all I could do, today is enough for peace of mind now.

I do not cry more than a stifled tear once in a long while.  I wipe my love's tears far more often.   I am not consciously fighting back the tears.  It only makes sense though, that somewhere along the line I would have broken down, did the woe is me thing.  I just don't feel it.  The waste of it all makes me very sad sometimes if I dwell on it, but that's not the same is it?

Being housebound is a bore.  Thanks to G+ I can see out at least.  
I wonder if when I am able to get some kind of car on the road next spring I will still be up to driving.  This whole thing has affected me in a lot of unexpected ways.  I am a lot older, less aware.  I am not sure I trust my reflexes anymore, and maybe not my judgement either.  I remember in a past life having difficulty relating to very sick friends.  I think I too found it easy to drift into distance and unintended indifference.  Writing this has led me to the thought that a lung transplant would restore me, make me whole, free me from the prison that is my body.  I want that chance with all of my heart.  

Tuesday, 10 December 2013

Conversation this morning with The Dr. Too (family physician)

I put a call in to The Dr. Too this morning asking for a call back. Like always, she called me back promptly.  Any conversation with her is fun and challenging.  This one was no exception.  She is funny in a good way, although she is prone to riding any available tangent off into the sunset.  The conversation went something like this:

her: Hi Russell.  What's up?
me: The Dr. died.  I have a big problem.
her: Yeah, I read the obit yesterday.  What sad news.  How did you find out?  What can I do for you?
me: J called me yesterday to tell me and to tell me that my application for a lung transplant was still on his desk.
her: Wow.  Slow down.  Tell me what is going on.
me: Ok.  I'll give you the story in short form.  At the beginning of August The Dr. told me that we were ready to submit the application.  All that was left was to have another CAT scan of the lung tumour.  I had that done a couple of weeks later and the results were great.  No growth between May and August.  A week or two later I had a mild heart attack followed a few days later by a moderate one.
her: Wait, what, you had a heart attack?  When?  Two?  
me: one at home, one in the hospital.  
her: Did The Dr. know this?  Wait, something here in your file.  You had some tests done while you were in the hospital   MIBI
me: Yeah    I know.  Just listen.  I have this all worked out.  Just let me tell you the facts in order, OK? Let me bring you up to speed, tell you what I need from you.  OK?
her:  So ok.  Hospitalized for heart attack.  
me: Right.  Two.  Had a MIBI done.  Got out, saw Dr. A., my old cardiologist who read the MIBI and pronounced me ok and ready for a transplant.  He did not make a report to The Dr.  The Dr. saw me and the MIBI and promptly sent me to Dr. P., telling me no transplant application until my heart was certified up to it.  Dr. P. sent me for an angiogram and subsequently spoke to and submitted a written report to The Dr. informing him that my heart was strong enough for transplant.  
her:  So, what's the problem
me: Everything is on his desk, nothing sent to Notre Dame, they don't know about me
her: What do you mean they don't know about you
me: Well, The damn thing has not been submitted
her how do you know
me: J called me yesterday.  I asked.  I had left 9 messages asking if it had been sent over the last 3 weeks.  I left messages yesterday too.  One of those she returned.  Told me the news.  I asked what about my application.  J told me it was still on The Dr.'s desk.  I asked her if she could send it.  She said no, she did not know what to do with it.  She said that she would try to have someone look at my chart.
her: So, give it some time.  Let her work it out.
me: No.  Sorry.  I am going to get this to Notre Dame now, on my own if I have to, but I need your help.
her: Dr. P. would be better than me, you really should call him first.
me: No.  He is a cardiologist, I have met him twice.  You have known me for 15 years.  I have spent a year reading, studying many different hospital's protocols for lung transplant, and believe me, the most important Dr. on that team is the Family Dr.  They don't even look at someone who does not have the backing of a solid family physicians.  You are it, Dr.
her: Russell, you need to let J work on it, you need to talk to Dr. P.
me: of course I will let her work on it.  I love her, she is hurting now.  It's just that I am going to drive this thing now.  Me.  I can't wait anymore for others to take care of this exclusively.  I need you now.  Am I legally allowed to have my chart?  Do I have the right to obtain it physically?  
her:  Yes.  Of course.  It's yours.  Did you ask for it?
me: No.  I was in shock.  She was mortified because the damn application was still on the farking desk!  I expressed condolences, asked about what was going to happen.
her: And what did she tell you
me: She told me she was going to try to get someone to work on it.
her: So, let her  Give her a time    
me: NO  It is not going to work exclusively like that.  I will get my chart and bring it to you, now, ASAP.  I want you to call Notre Dame, find the right people, get me in front of them.  It's cool if J tries too.  I don't think Notre Dame is going to get pissed at me because of two agencies working on my behalf.  I have non small cell cancer, at death's door from lung disease and I do not have any specialists!  I ain't waiting Dr!  My best chance is to get to Notre Dame.  If on the outside chance they do say yes I don't need any other Dr.'s.  Everything will be done for me there.  That is what we are doing first.  Getting a yes or no from them.
her: Get your chart.  Bring it to me.  I will see what I can do.
me: No, Dr.  I am bringing it to you and you are going to drive me down there and get me in.  
her: Russell, you know I can't drive you there myself.
me: I know.  It was said figuratively.  I am going to put the chart in front of you, you are going to contact the thoracic surgeons at Notre Dame and explain the odd circumstances to them.  You are going to get me to the  door.  Please.
her:  Call J.  Get your chart.  Bring it to me.  We'll think of something.
me: Cool.  Thats what I need.  I need you now.  Right now.  I need you to step up for me.  I need you to save my life, The Dr. Too.
her: Russell, you know I am there for you.  Stay healthy in the meantime.  Stay good, positive.  We'll get it done, we will, give J a chance.  Be nice.  Such a shame about The Dr.
me: Yes.  J is suffering now, so sad.  He really was a good Dr. Thanks.  I'll call you soon.    :) :) :)

Monday, 9 December 2013

calmed down some since I wrote this

What a morning.  I don't think I have digested things yet.  All the effort, all the hope, all the pain might have been for nothing.  I am afraid of getting angry.  I am unsure if I could ever stop if I did. Of course I am saddened by The Dr.'s death.   I just did not plan on dying with him!  I did not expect him to take me with him.  All those unreturned call were due to June's embarrassment that my lung transplant application was still on his desk, week after week while I tried to get it expedited. 

It is not right.  It is not fair.  Why is this happening to me?  I was ok last March with what my fate was.  Then they opened a box that gave me hope.  I had to change the way I think, my goals, the way I life.  I did, too.  I got onboard.  I hoped and hoped and hoped.  Now the dream is shattered because they did not do their jobs.  I rang that fucking phone nine times while he was alive over three weeks and she did not have the decency to return a single one of them messages.  Today, after my second message where I asked if I still had a doctor did she bother to reply.  She told me she would try to find another pneumologist to look at it.  I expressed my condolences and only asked about the fate of my application. She promised to call me back.  I do not believe her for a minute.  I know she means well but I just cannot trust my feelings to her anymore. They let me down as much as you can let down another human being.  There was no excuse for not calling me back, for ignoring me all that time.  It was a vile way to treat me.  I really expected better from June.  I thought she was one of my angels.  That betrayal makes me want to cry.  

I don't know what will happen with this particular blog.  I sure as fuck do not seem to be in the hunt for new lungs at the moment.

I have lung cancer!  I have nobody following me.
I have stage 4, end stage emphysema, I had two years or less to live last March for fucks sake!  I have no pneumologist.

It has all fallen apart.  

You just could not make this shit up.

The Dr. died on Friday

I no longer have a pneumologist, The Dr. has died, my application just as dead on his desk.  Nicole is inconsolable, I am stunned.  He died on Friday night in his sleep.  June called me this morning after two more messages.  My application sat on his desk for three weeks, unfinished.  Trying hard not to think ill of the dead.  June told me she will try to get another pneumologist to take over the file and complete it.  Yeah.  I got lots of confidence in that.  Lets get our hopes up one more time.  Lets waste another nine months with false hope.  Two weeks ignored, two weeks my life sitting there unattended.  Now it's too late.  I don't think I want to play this game anymore.  Not one fucking little bit.


Three weeks.  Three weeks since I went and filled out the forms. Three weeks of messages not returned.  Seven in total.  My confidence in The Dr. and June is fucking shot.  Duck and cover. Thanks a lot, June.  Your empathy is extraordinary, and I sure don't mean that in a good way.  Glad I am not trying to report an exacerbation.  I would be dead already.

Thursday, 5 December 2013

I might be gone for a while

There is nothing going on doctor wise.  Dr. P. cleared me and my heart for a lung transplant more than a month ago.  Three weeks ago I let The Dr. and June know.  Two weeks and four days ago on a Monday June called and told me there were forms regarding the transplant application that I had to fill out.  I went the next day and did so.  The Dr. did not have hours that day but I was assured that the docs would be given to June the next day.  I called that day, a Wed, again on Friday, and again on Monday and Wed. of this week.  I could only leave a message each time, the phone was not answered.  The message was a really simple one.  Did my application for a lung transplant get forwarded to Notre Dame Hospital.  I am still waiting for a call back.  I feel really lousy about this.  The Dr. is known to "fire" patients who he does not like.  I simply have no choice but to suffer in silence and await whatever the fuck is next.  Luckily, for now, I am ok physically.  Right.  Ok for someone seriously fucked up with end stage emphysema.  Really.  Some days I don't even believe it myself.  Those days I figure I must be a fraud or one tough SOB. Fraud wins out most of the time.

I would not have posted a rant today other than the fact that I may be out of touch for a month or three.  It is a long complicated and stupid story but essentially I got behind on the taxes on my house.  I had a plan (dumbass) to get the oldest part of that cleared before it became a legal problem.  At the same time my mortgage is coming up for renewal at the end of January.  We do not want and cannot reapply or make changes, we would not pass muster. The arrears have to be cleared before renewal date.  The renewal will be automatic at a new lower interest with lower payments.  The mortgage is small and we have a lot of equity.  We have to keep out house.  The mortgage company contact is a sweetie, she is trying her ass off to help.  Yesterday we agreed that my next 4 bi weekly payments will get applied to the arrears which cuts a chunk.  I have some cash that I am sending them now and more when we get pension income in mid month.  We can just about manage it, it will work.  No matter what we will get it done.

Virtually every cent we have and will have for the next few months are going to have to go towards the arrears and there will be nothing for anything else.  Nicole and I are ok with that.  We don't care.  All we care about is not loosing our house.  It would be insane.  Rent would be double the current mortgage.  So, I suspect I am not going to be able to keep the cable and the internet going for much longer.  

Things will be better towards the spring.  We both have significant increased pension income coming in late Feb.  We are ok with everything, we just have to sacrifice now for long term good.  

So, I will be around as long as I can, I will keep writing and see you all soon.  Happy holidays, Merry Christmas, have a helluva nice Quanza and generally have a nice time.  Nicole and I will.

PS.  This was hard to write.  I am proud that I did.  It is far worse to worry about what people will think about you than to stay silent and not share.

Tuesday, 19 November 2013

Butterflies & pounding heart!

I went to The Dr.'s office and filled out the forms.  No office hours today so I will call tomorrow to find out what happens next.  I think everything is done now.  I think now I just wait for the call from Notre Dame Hospital to go in for the transplant evaluation.  I am excited.

I am not thinking much about how hard it will be.  My thoughts are more of the things I might yet get to do again.  Like riding a bike, walking a golf course, running, taking care of my own home. Thinking I might yet live to be 70 since I almost have 60 beat. Thinking about Nicole not having to be a caregiver to me.  All dreams, but closer.  

I really want to do it now.  I really want to live.  I feel so strong right now I have no doubt I can survive the operation and the rehabilitation.  Today I visualize the operation, the recovery, the rehab as sort of a game.  I love games and I am competitive. Suffering is all part of playing to win.  The prize being enough breath to have another go at being super fit, enough energy to run and run and run.  Oh my I want.  I am ready!  Maybe I can make it on to the Transplant List by Christmas?  By my birthday at the end of February?  I think so!

Monday, 18 November 2013

No More Waiting

The phone rang 30 minutes ago.  It was June of The Dr..  She told me to go to the pharmacy and get a print out of my current prescriptions and to bring it to The Dr.'s office.  The application for my lung transplant is ready for my signature.

Monday, monday...

Monday morning waiting mode.  I think I am getting a cold.  The last two days I have felt a bit out of sorts.  That is way scary.  I have not yet reached for the emergency antibiotics and prednisone. I will hold out a bit longer.  I hope and expect to hear from The Dr. this week, and I fully expect there will be no more delays.  

I have been thinking off and on for the last week or so about how I am feeling emotionally and it is not at all a straightforward thing. For much of my life I have viewed my emotions with distrust. Emotion hurts.  I think to a great degree I turned them off and life was better for a long time, decades even.  Of course you cannot really turn emotion off, but, you can clamp a very tight lid on them.  I am starting to suspect that rather than feeling good I am noting an absence of feeling bad.  Is this really living in the moment, this lack of self analysis, this lack of feeling?  Ultimately trying to live without emotional content fails, and fails spectacularly with depression and anxiety, at least in my experience.  That is not happening now but I am wary.  

It is almost as if I only know two ways to be.  One way I am full of self doubts, uncertain and questioning of everything, every motive, every action, every thought.  Lost, floating,  unsure of anything at all, ever. The other, blissfully ignorant and accepting.  

I don't know how I feel, really.  How I am feeling seems to be a deep dark secret that my unconscious self will not share with my conscious self.   Comfortably numb.  I wonder how much of my "happiness" is the result of absence of pain and suffering in the short term?  I think I am just existing.  I have been completely unsuccessful in addressing my thoughts of late.  As soon as I start to see, the fleeting thoughts retreat.  There is something that I need to understand.  

Wednesday, 13 November 2013

Dr. P. called me this morning

Dr. P. himself called me a little while ago.  He advised that he had a discussion with The Dr. this morning.  The call to me was specifically to tell me to stop taking carvedilol, a beta blocker that he prescribed when I saw him last week.  The intention was to try it at an ultra low dose 3.25 mg instead of the standard 50 mg.  The drug had the intended effect of lowering my pulse rate.  For the first time in years it was under 100 every time I checked it during the last week.  My weakened lungs make my heart work harder and that causes not only congestive heart failure and heart attacks but my pulse rate is seriously high all of the time, which I figured cannot be a good thing.  Unfortunately the main side effect of the drug is difficulty in breathing.  I have noticed that I got short of breath easier in the last week than normal.  I think I was willing to accept the trade off, but, The Dr. wants me to stop taking it.  So, stop it I will.  We can discuss it together during my next appointment, which I imagine will be in the next week or two.  

From Web MD
Chronic obstructive pulmonary disease (COPD) and heart failure both cause difficulty breathing. For people who have both COPD and heart failure, identifying the cause of breathing symptoms can be challenging.

Symptoms of COPD and Heart Failure

COPD and heart failure cause the same main symptom: shortness of breath with exertion. People with COPD, heart failure, or both, have a limited ability to exercise, climb stairs, or walk long distances. Difficulty breathing occurs for different reasons in COPD and heart failure.
People with COPD have difficulty exhaling all the air in their lungs because of lung damage -- often from years of smoking. When it takes longer to exhale completely, it’s hard to increase the rate of breathing. Most people with COPD breathe comfortably while resting. During exertion, though, breaths start coming in before air from the last breath has been exhaled, and shortness of breath results.
In people with heart failure, the heart does not pump blood efficiently. As in COPD, most people with heart failure can breathe easily when at rest. With activity, blood flow must increase, and the heart must pump harder and faster. If the heart can’t keep up, blood “backs up” into the lungs. This fluid congestion causes shortness of breath.

COPD and Left-Sided Heart Failure

Heart failure in the left ventricle is the most common form of heart failure. Left-sided heart failure is most often caused by high blood pressure or coronary artery disease. COPD and left-sided heart failure are not directly related. However, the two conditions may influence each other. For example, low oxygen in the blood from COPD may put excess strain on the heart, worsening left-sided heart failure. Excess fluid in the lungs from heart failure can make breathing even more difficult for someone with COPD.

COPD and Right-Sided Heart Failure

Severe COPD can cause heart failure in the heart’s right ventricle, a condition called right-sided heart failure or cor pulmonale. In severe COPD, oxygen concentration in the blood falls to abnormally low levels. In response, the walls of the main blood vessels inside the lungs (pulmonary arteries) change. The blood pressure inside these arteries goes up, as well. This is one type of a condition called pulmonary hypertension.
The heart’s right ventricle pumps blood through the pulmonary arteries into the lungs. High blood pressure in the pulmonary arteries puts excess strain on the right ventricle. Over time, the right ventricle may become stretched and dilated, and fail to pump blood effectively.

Right-sided heart failure causes fluid to accumulate in the body, such as in the legs and abdomen. Many conditions other than COPD also cause pulmonary hypertension and right-sided heart failure.  

I think we are just about there, the referral to the thoracic surgeons at Notre Dame Hospital is almost in my hands.   I remain calm and detached.  I feel good.  I will not be surprised by anything once I get the referral.  The surgeons might not want to help out an ex smoker.  I might not have the genetic makeup they need.  Those things will not matter if they happen.  It will just be the way things go.  However, having gone this far I would be mightily disappointed if I did not at least make it far enough to meet those good doctors at Notre Dame Hospital.  

Monday, 11 November 2013

I called The Dr. this morning and I spoke with June.  I let her know that I had met with Dr. P. last Monday and that he had given me assurances that my heart's health was good enough to endure the transplant.  She had not seen anything from Dr. P. yet.  She promised to keep on top of it and get back to me shortly.

I thought today I would talk a little about what my illness feels like these days, what I am up against all the time.  The best analogy I have heard to date is that emphysema in it's late stage feels exactly like breathing through a straw feels to a person with normal breathing.  You get air, but it is never enough, ever.  The normal reaction to this feeling is panic and that only makes it worse.  First, you have to accept that this is all the air you can get and it is enough, it just does not feel that way.  You do learn to cope and adapt to this to a certain degree. If I take a few steps too quickly or brusquely I am left out of breath completely and it takes a few moments to recover.  This happens all the time, especially when I feel pretty good.  I really am an infernal optimist, I constantly forget that I am sick, which I suppose is a good thing generally.  I can go from gasping, on the edge of loosing consciousness to good to go in a matter of two minutes.  It is so damn easy to forget and get into trouble.  I keep thinking that is good. 

I have a lot of pain being caused by a shot left hip.  For most of this year I did not really feel it much because I was taking prednisone.   Happiness is not needing or wanting to take prednisone.  I feel infinitely better at the moment in spite of the skeletal pain I have to endure.  I know this spring time of good health I feel now is fleeting.  I am enjoying ever last second of it. 

Emotionally I think I am doing pretty good.  I face things without being overwhelmed by them.  My biggest worry is and always will be staying solvent and making sure Nicole gets a house with plenty of equity in it.  That remains a serious challenge and we live on the edge.  That itself is a major source of anxiety.  I do not feel sorry for myself at all.   I am not depressed for which I am thankful.  I do feel a bit lonely at times.  Without a car it is difficult to get around.  I can walk but not very far.  I am afraid of crowds of people, especially now that the weather is colder and we are in flu season.  Flu terrifies me.  So I am mostly shut in.

I take a LOT of medications.  I really wish I did not, did not have to.  I have no desire to fight or disagree with my Doctors at this time even though I suspect this is somewhat a ridiculous medication load.  They all seem to be indicated.  Here is a list of what I take at the moment:
Carbocal D                                                      1000 mg           daily
Ramipril                                                                  5 mg           daily
Clopidogrel                                                           75 mg          daily
Citalopram                                                            20 mg          daily
Asaphen                                                                80 mg          daily
Rosuvastatin                                                         10 mg         daily
Azithromycin                                                        250 mg        daily
Fosavance                                                              70 mg        weekly
Spiriva                                                                                        daily
Symbicort                                                                                  2x daily
Bricanyl                                                                                      as needed
Prednisone                                                                                 when req
Quite the load of meds eh?  I hear post lung transplant involves about 50 different medications!

Today is a good day.  I love Nicole.  I have gorgeous little kitties to play with.  I have friends who love me.  

Hopefully June of The Dr. will make my phone ring soon, and her lovely voice will tell me to come see The Dr.  The Dr. sends the application and we live happily ever after.  Helluva story, eh?

Wednesday, 6 November 2013

Dr. P. Says Good To Go

On Monday morning Dr. P. unequivocally informed Nicole and I that he would be calling The Dr. to advise him my heart was up to the standard required for a lung transplant.  I think we are back on again, at least in terms of getting an application submitted to Notre Dame Hospital.  I will chill for the rest of the week.  I will call June at The Dr.'s office on Monday if I do not hear from her this week.  Will The Dr. sign off finally?  Will there be something else??  Who TF knows!  Not me!  Know what?  It's ok.  It's all good.  I is only along for the ride, ready for whatever comes next.

Dr. P. told me I actually had two separate heart attacks.  The first one at home on that fateful Tuesday morning in August.  That was followed three days later by another larger heart attack on Sunday morning while I was in the hospital.  I would not have guessed about the second one.  It did not involve any chest pain at all.  It was a horrible event that lasted at least 4 hours, I was put on a ventilator and I do remember wishing I could just die and get it over with.  Still, it felt like another breathing attack or breakdown not a heart attack.  Live and learn I guess.  Dr. P. started to get into the technical aspects of what happened to my heart.  I was surprised to find I was not particularly interested, I did not make any notes.  The damage to my heart is considered moderate to medium.  Right side is fully congested, left side fully functional. The strength of the muscle is reduced overall by about 35%.  This is all within the norm according to Dr. P.  Surgery is not called for. Medications for life.  

So, we feel good about things as they stand now.  Stress and misery are nowhere to be found in our house.  Life is good.

Tuesday, 5 November 2013

Lana is going to pick me up in about an hour to drive me to see Dr. P. the cardiologist.  Supposedly I will know finally if my heart is up to standard for a lung transplant.  I have no confidence that I really will find out today.  Something will creep up and keep me in a holding pattern.  The information I have so far does not seem to add up.  

The good part of all this is my attitude.  I wish I knew how I do it, at least sometimes.  How is it that I can detach enough to not worry about ANYTHING a lot of the time and other times I vibrate at a million cycles a second with anxiety.  Dunno.  No farking idea really.  

Nicole and I talked a bit this morning about just that.   I told her that I would be just as happy to have the transplant called off as I would to have it go ahead.  Maybe that does not make sense to someone else, but it feels true to me.  Once I am told I cannot have one then life resumes most simply.  Right now I feel like I could live forever just as I am.  Maybe it might not feel like hope is gone, but rather like it feels now, that it is time to live today, everyday.  The transplant hopes represent chaos and uncertainty, stress and pain from the moment it happens until I die from a related effect somewhere in the unknown future. 

I do feel pretty good at the moment and that is just fine.   


Saturday, 2 November 2013

I have been feeling quite good lately.  Staying in the moment has been easy and I have not fretted very much about anything.  I also have not been writing, though everyday I think about it when my thoughts produce something interesting.  Today I will start writing again.

I had the angiogram two weeks ago Monday, and I see the cardiologist this coming Tuesday morning to discuss the results. During the procedure itself the surgeon told me the news was good.  No angioplasty to be done.  No corrections necessary. The left side of my heart has no obstructions while the right side is completely obstructed.  As well the pumping strength of my heart is decreased by some 35%.  Supposedly this is all fine.  Even if I could have surgery I was told none would be needed.  My heart is fine for all intents and purposes.  While I am ignorant of cardiac anatomy generally it does seem like the left side does almost all the work in terms of bringing blood in and out.  I dunno.  I am waiting until Tuesday to hear in plain language that my heart will not be an impediment to having a lung transplant.  Even when Dr. P., or if Dr.P. says I am good to go, The Dr. has final word on signing off on an application for the lung transplant.  I do think that we are close to moving closer or being shut down altogether.  I am pleased about that.

I will just post this now and come back to write more later and again tomorrow.  I am quite amazed at how good I feel.  

Wednesday, 16 October 2013

My angiogram and hopefully my angioplasty will take place next Tuesday October 22nd.  If they pull the catheter out of me without having done angioplasty there will be no lung transplant.  That hope and dream will be over.  If I am lucky blocked arteries will be ballooned and have stents inserted.  If that happens I might still have a chance for a transplant.  

I went to the Royal Vic yesterday for a "pre op".  The normal drawing of blood, an EKG, and most importantly a meeting and interview with Nurse Wendy.  She was up to speed on my situation and condition thanks to Dr. P., my cardiologist.  The Dr.,s who will be doing the procedures know my situation.  They will know this is my last and only hope to potentially get on the list and hopefully have a lung transplant.  They will know that I cannot have any surgery to fix the flow of blood to my heart.  This is it.  While the image is perhaps overly dramatic, there will be a moment next week, a catheter snaked into my heart, when I will know hope is still alive, at least until either Dr. P. or The Dr. inform me otherwise, probably sometime in November, or, the catheter comes out and does not go back in with balloons and stents, the dream will die and I will know that there will be no escaping my fate.

When I got out of the hospital last month I was in a dreadful mental state.  Some of the medications I was taking were leaving me in a bad state.  Massive doses of steroids, powerful synthetic opioids left my head spinning and my emotions were all over the map.  That has all passed.  No steroids and no more of the nasty mood changing shit.  I feel calm mostly now.  My anxiety level is fairly low.  While I am apprehensive about the angiogram and whether or not I will still have hope after next week, I am ok with everything as it stands.  My lack of concern or significant anxiety makes me think that I am not really facing things as they are.  I have probably blocked my feelings from surfacing, an old survival strategy that is always doomed to long term failure.  

The cats are good, Nicole is wonderful and I am trying.  

Thursday, 3 October 2013

The conclusive parts of my visit with Dr. P., the cardiologist, are that I did have a heart attack at some time, and that my heart is not up to the standard required for a lung transplant at the moment. That is the bad news.

The good news is that I am not quite finished yet as far as the transplant goes.  Dr. P. is sending me off to the Royal Victoria Hospital downtown for an angiogram where hopefully they will find clogged arteries that will then get busted up by the magic balloons and stents.  Shortly afterwards, Dr. P. will do another EKG and pronounce my heart fit for transplant and bounce me back to The Dr. who will then, finally, submit my application.

The Royal Vic called this morning to ask me to come in for blood tests, an EKG, and an information session about the angiogram which will happen at a later date which I know not yet.  Date set for October 15th.  They said it would take about 3 hours and that I should have someone there to act as a helper/advocate.  

So, I have gone from not having had a heart attack to having had one.  If angiogram and related procedures don't cure the problems my heart is having, the transplant is off for good.  There is no possibility of surgery to fix it.  I have not been worrying about this since The Dr. told me last week that my heart had a problem serious enough to take me out of consideration for a lung transplant.  This week, Dr. P. tells me there is a possible solution. I guess I will run with that for now.  

I let the transplant genie out of the bottle last March when I said I was interested in having my lungs replaced.  Sometimes I am sorry I did say yes.  Prior to that I was, as they say, fat, dumb and happy.  I was resigned to my fate and I think I was adapting quite well.  Since then the stress level has been ratcheted up continuously.  It feels like there is always something more to do, another test, something else to fix.  The whole idea of a lung transplant is scary to say the least.  Hell, the angiogram is terrifying enough.  

I continue to get better post hospital.  Pains that I had in my chest and side are gone now.  I have more energy than at any time since I got hospitalized.  I can breathe a little easier, I get tired a little bit less.  I have lost a step or two, but not too much that it is discouraging.  Stopping the prednisone was a good thing, for now at least.  I feel better emotionally as well, anxiety level is way down.  Our problems have not disappeared by any means but at least we are not letting anxiety kill us.  Getting help is hard.  

Tuesday, 1 October 2013

Dr. P.'s office called yesterday and gave me an appointment for this morning, in about an hour.  The Dr. will decide if my heart can handle the rigors of a double lung transplant.  

Since The Dr. advised me last week that he needs this cardiologist to sign off on my heart I have been calm.  I have managed to stay in the moment and not think about it.  

Is my heart ok?  Did it get damaged last month?  Will The Dr. refer me to the thoracic surgeons at Notre Dame Hospital?  Is there still hope?  Stay tuned.

Friday, 27 September 2013

Ok.  Calm the fuck down.  Just do it.  Vibrating and a heart rate of 140 is not the route to a happy day.  

Dr. P's (the cardio that The Dr. wants for my heart eval) office called this morning to verify that I wanted, and that The Dr. wanted, a consultation with him.  Dr. P. had noticed that the cardiologist I saw last week was indicated as the Dr following me on my discharge papers.  I had to explain and tell them that The Dr. wanted Dr. P. to do the evaluation of my heart to determine if it is sufficiently strong to endure a double lung transplant.  I hope that suffices as an explanation for him and that I get another call with an appointment, soon!  It was pretty obvious that The Dr. was not impressed with the cardiologist I saw ten days ago and the lack of any kind of report.  The day ended without a call back from Dr. P., which left me concerned, of course.  Maybe today, eh?

So, I think I realized something, possibly important, last evening while I was glancing at the last Montreal Canadiens pre season game and thinking about things.  Most of the anxiety and stress I feel is coming from my desire for a lung transplant and the uncertainty that I will actually get one.  The transplant hope is distracting me from today, from right now.  I think about the future more than I do the present.  Current internal dialogue goes something like this: "OMG if I do not get a transplant I am going to die pretty soon, what do I need to do, what can I do, what's next, why don't they call?"  Totally stressful!  Before transplant talk, and before cancer, before a lung transplant got way complex because of my body betrayal, the internal dialogue was something like this: "yes, you are sick,  yes your living time is short, but you are lucky!!"  "You get to see everything again, for the first time." "You have the opportunity to live and love, to find joy and laugh and use the time well, as you want."

I think I need to live, to get up every morning, as if there was no possibility of a lung transplant.  It is such a long shot anyway, very, very long odds against me.  I need to keep hope, but to keep it on the back burner, so to speak.  It ought not to be omnipresent, always in the forefront of my mind.  Being happy, loving Nicole, my family and my friends is paramount.  I have forgotten that.  I got distracted by hope.  I already have life.  High time to remember to live now, today.  

Wednesday, 25 September 2013

It is a different me sitting here today than it was a few months ago. The man who was taking things a step at a time and finding joy is nowhere to be found.  The pressure, stress and anxiety of waiting has crushed me.  Today I expected some resolution to something, anything.  A beginning to something.  Stupid infernal optimist. Instead,  The Dr. informed us that the MIBI test report shows heart damage, regardless of what the cardiologist told us when we saw him ten days ago.  The Dr. insists that I need to see and be evaluated by another cardiologist before he can send in my lung transplant application.  So, now I am waiting for that call, and that appointment and probably more tests.  

The Dr. was very displeased with the records from my hospital stay.  I had looked at the information package they had given me when I was discharged, specifically the MIBI results, and tried to make sense of them.  I could see that the report mentioned things like "St abnormality, possible inferior subendocardial injury," and a number of other possible defects that had been found as a result of the test.  What the hell do I know, I thought.  The hospital cardiologist had assured me when they let me out that my heart had not suffered any injury.  The cardio I saw two weeks ago said my heart had not been injured and was fine, and he had the MIBI results in front of him.  The Dr. does not agree, or at least he wants another cardiologist of his choice to either agree or disagree that my heart is up to the job of enduring a double lung transplant. I have no option but to agree with The Dr.  I hope it will not be a long wait.  

My cancer is a sleeping dog and it will be left to lie, undisturbed. The Dr. emphasized that the cancer had not grown and was the same slow moving non virulent cancer it was back in March when it was discovered.  Contrary to what my imagination tells me the cancer has not spread to my brain nor my penis via my blood and there is no good reason to suspect otherwise.  I was nevertheless, stunned, shocked and disappointed that we were not attacking it. The Dr. has all of my eggs in the transplant basket.  He does not want any scar tissue from radiation on my lung to complicate a transplant.  There was no talk about my lung cancer being an impediment to getting on the transplant list.  The heart is a potential show stopper.  He said we need to deal with that first, and right away.  

I had a lot of questions that I did not get to ask.  I was and am very unhappy about that.  I was rushed through the appointment, there was information I wanted The Dr. to have and there was information I wanted from him that was left hanging.  At first, after we went through the hospital stay and the MIBI and cardio reports he was walking to the door and declaring the appointment over. His waiting room was full.  I did not get up and reacted in a shocked manner.  We had not even talked about my cancer!  He did then slow down and walked me through what I have explained earlier in the post.  After that I felt a bit better.

We have not heard from NOVA yet.  I hope they come soon.  We really need help.  This week still has a couple of days left in it.  I am feeling depressed and wracked with anxiety.  Anxiety seems to be about the only thing I will let myself feel.  I want to get back to just thinking about now, this moment.  That mindset feels so far away now.  I am afraid of everything, sure that the next minute or hour will bring another attack.  

My family Dr. called yesterday to make an appointment with me.  I suppose she has been advised of my hospitalization.  I declined to make an appointment because I was so certain that I would be starting radiation right away.  As much as I detest the idea of another appointment with another Dr., I better make the appointment.  She is the only Dr. in the loop who thinks of me as something other than an organ.  

Sunday, 22 September 2013

What the hell is going on with me?  That was my question sometime on Friday afternoon, I think.  I felt disconnected from reality, hot and cold sweats, tingling in my fingertips and toes.  I could write about quite a few other symptoms but it only took me a few minutes to figure out what the problem was once I was lucid enough to form the fucking question.  Prednisone.  Ever since I got home I have not felt remotely like myself.

I think the hospital did not taper me off the 50 mg of prednisone that I was on during the hospital stay.  I went directly from 50 to 15 mg.  A recipe for disaster.  It explains a lot about the shit I am feeling, have been feeling.  

I dropped my dose on my own this morning to 10 mg from 15 mg. This in fact may be opposite to what I should do.  I see The Dr. on Wed.  I will call tomorrow and see if I can get some advice in the meantime.  

No wonder I have been feeling so utterly horrible.  Just knowing this makes me feel better.  We may have to rethink prednisone on a daily basis.  

Seeing Mark, Cindy and Madeline at our house was lovely yesterday.  The little one is thoroughly adorable, smart, nice and charming.  You can tell she is surrounded by love.

Considering everything, I am feeling reasonably ok.  This is the big week coming up.  The biggest since The Dr. uttered the word "transplant" back on March 3rd of this year.  Nova is coming to psychosocial save us, cancer treatments should start, or at least I should have the appointments and referrals to the oncologists and I ought to get a yes/no at least as to my lung transplant application being made.  

Thursday, 19 September 2013

Six more days before I see The Dr. and head off on the next stage of this journey.  This morning I feel very tired and numb emotionally.  I will gladly take that.  The stress feels muted and in the background.  I imagine I have worked myself into a frenzy of sorts over the last couple of weeks and I have now crashed.  It has not been as dramatic as that sounds.  Not wired up every second, and never forgetting that I am somewhat depressed.  For me, if I can remember that I will be ok.  Somewhere over the next week, maybe even today I will meet the psychologist.  Next Wed afternoon after The Dr., a good friend who is an accountant will sit down with me and figure out where we are at.  I am flying rather blind at the moment.  

I have lost ten lbs since I went in the hospital on August 27th, six since last Friday.  I started to eat more often, smaller amounts.  I am 106 and I need to be 120.  Eating is just another thing that is difficult to do short of breath.  

I have managed to avoid colds and flu for a few years.  I don't expose myself needlessly and I stop doing stuff physically when I feel symptoms coming on.  I feel the symptoms today.  I am going to lay fairly low.  Not time yet for the emergency antibiotics.  I could just be run down and needing some rest.  I have slept really poorly for the last few nights, as has Nicole.  Maybe a day kicking back might be in order.  I have been working, exercising, walking as much as I can, staying on my feet, moving as many hours a day as possible.  I think today is going to be a day of rest.  

Monday, 16 September 2013

I made my call this morning asking for some help.  Again, I am lucky in that I have known the head nurse of the local non profit group that offers psychological and social support for cancer patients and their caregivers.  We talked for quite a while, she has known me for about 20 years.  Within a couple of days I am going to have a chance to sit with a psychologist who specializes in helping people deal with the emotional issues that come along with a debilitating disease.

There will be more services available.  Caregivers are supported.  Nicole needs help, too.  I was her caregiver for a period of years.  I know how hard it can be.  It is often harder on them than on the patient.  They will be able to help us with upkeep of our house.  We just cannot do it anymore without help.  There are so many things we need to deal with and we really only have energy to do the most basic of things.  

It was very cool talking to my nurse friend.  I know I have a great group of people who are going to be able to help us in a lot of ways. They will get me to and from my cancer treatments, also.  I feel a great relief.  Within a couple of days some really professional people whom I trust are going to come to me and help me get focused for the job at hand.  That alone lends me some calmness, the first I have felt for days.  

The Dr. called this morning as well.  I will see him on the 25th for what will be the big handoff to the Jewish General and the oncologists.  I truly hope he is ready to formally make my application for a lung transplant.  If it is up in the air still, well I will live with that.  If it's just not going to be possible I want to know that too.  Now.  

So, thats today.  Its been a bit of a trip.  A lot of emotions.  A lot of sharing with Nicole, I cannot hide from her, I have to be honest with her all the time about what is going on with me.  It is high time we look out for Nicole.  This is brutal on her, and she is significantly handicapped on her own.  Aphasia ain't no picnic even when you can operate at a fairly high level.  A lot of this happens in the dark for her and it is terrifying.  This weighs on me a lot.  I feel good about getting her into my health support loop.  I sure can't live without her.  She needs to be healthy and happy and not overwhelmed with work and caregiving.  Right now she is overwhelmed.  Something had to give.  We did the right thing today. I am lucky enough to have had the right contact in the right place.  I am so fucking lucky when you really stop to think about it.  

You all have a good day.  I am on my way back.  Love to everybody.  

Faith. God, Buddha, Mohammed many other choices of organized religions and subsets are available.  You can be agnostic or atheist.  My parents were teenagers when I was born.  My mom was Anglican and my dad was Catholic.  I think my dad still remembered vividly the beatings he suffered at the hands of the kind brothers who taught at his school and the vast quantity of catechism he was forced to memorize or get beat again.  He told me often about simply being punched in the face, in class, as were the other boys.  I don't recall ever hearing stories about my dad being a problem kid.  It was simply the system.  My mom and dad sent me to protestant school and to an Anglican church for Sunday school.

I actually loved the Sunday school I went to.  One of the first things even the youngest of children were taught was that the stories in the bible were parables, stories, used to illustrate an important lesson.  There was no hellfire.  There was being kind to others, doing good if you could, and giving back when possible.  The ten commandments were a biggie.  It was gentle, and human and not doctrinaire as far as I could see.  I stayed involved with the church until I was perhaps 15.   I followed lent, it was rather easy since my church was right across the street from my school, and I know it pleased my mother.  Church and sunday school was a seasonal activity.  It shut down for the summer.

I don't pray in a traditional kneel and say a prayer.  When I meditate or try to allow my mind to empty, there is nothing like a prayer involved.  At this stage of my life I am not a prospect for your church or faith group.  I talk to my Dad who is dead.  I like to tell him about all of the changes in the world since he left.  He never answers back.  I think I feel my grandmothers who have passed but they also do not talk to me.  I feel my mother.  She also is silent.

That being said, my interest in things spiritual are much more active than they ever have been before.  Twice in one week I without a doubt attempted to communicate directly with God.  Once to ask please kill me and once to please not harvest me yet.  Make up your mind already, huh?

Somehow I don't think that described situation is prayer, it is fear.  One comes from continued unendurable pain during an event, the other from being conscious enough during a life threatening situation to be afraid of dying.  

On Saturday afternoon one of my neighbours knocked on my door to see how I was doing.  We had not seen each other for a while and he knew the fire truck and ambulances a couple of weeks ago were for me.  He has always been a very nice fellow to speak with.  Any hard case atheist could not as much as talk to him.  He is a born again Christian and he takes this very, very seriously.  He and I get along fine.  He actually listens and respects and does not proselytize very aggressively and stops entirely when either asked to do so or he realizes it is appropriate.  He is a nice smart guy with strong convictions.  I can't help but like him.  We talked for quite a while on my front steps about faith, God and the universe.  He doesn't hit me up with the Bible.  He respects while not agreeing with my views expressed a little earlier.   He invited me to his prayer group and I politely declined.  He asked if he could have his group pray for a miracle to cure me.  I refused, telling him I am far too much a man of science to pray for a cure to an incurable disease.  I did accept happily to be added to the prayer list for an ease of my suffering.  Quite a pattern here.  Pray.  For me.  Uh huh.  Needs some work I think.  We are going to sit down and have a couple of beers later in the week.

I need to beware of falling into the trap of looking for answers to the big questions.  I highly doubt they will be forthcoming.  What I think I need to do is to reinforce the beliefs that I have built up over a lifetime of living, learning and being taught.  Perhaps refine those beliefs, and perhaps if I am immensely fortunate find someone or a situation that gives me a fresh perspective to look at things from.

I am God, you are God, we are all God.  God is everywhere and in everything.  60 years and its all I got to show for it.  It is what is in my heart, but it is so hard to be sure about these things, and I think uncertainty in matters of faith is probably a solid sign of sanity or at least free thinking.

I got up really early for me today, about 6 am.  I am fighting the dark cloud today still, but it seems less intense.  That son of a bitch knows I see it clear as day and I am going to take steps today to slay it.  On that positive note I am going to hug my wife, pet a cat and see if I can have a bath this morning.  I tried last night and could not stand being in the humidity.  Normally I love my bath, a short shot of high humidity can actually make the lungs feel better.  That did not happen last night.  Going to try again today.  I loves me my baths.

Friday, 13 September 2013

Lana took us to see the Cardiologist.  For once I did not spend three hours waiting but was pretty much whisked in and out with the magic transplant sticker.  

Bottom line is my heart is ok, considering.  It is working too hard, all of the time.  My walking pulse rate is often over 130.  Resting awake it is rarely under 100.  Blood pressure and  blood oxygenation are nominal even under a light load.  

I did not have a heart attack.  Hearts stop after a while when they do not get oxygen.  That is what happened to mine.  Even though there was an oxygen mask on my face before I lost consciousness, delivering oxygen to my lungs, my lungs could not process out the CO2 that had accumulated.  Eventually, and for a very short period of time my heart just stopped because it had no fuel.  This was the initial event that brought me into the hospital.  The intubation and the drug regimen kept enough o2 flowing into my lungs and heart. 

What happened while I was in the hospital was something different all together from what brought me there, I think.  I will need to see The Dr. before I understand fully what happened and why it happened when it did.  What happened that night was tachycardia.
Cardiologist shrugs and says "well, your lungs they cause stress on your heart and sometimes you get this run away rhythm called tachycardia.  Seems I am lucky and strong and that this was my first bout with this new acquaintance.  Over the next year or two or more this is what is going to happen to me sometimes, and leave me weaker and weaker with less and less lung capacity (less than 15% now)  This is not a one time thing.  There is no fix, other than a transplant, which is still just a dream. This is what kills people with emphysema.  I think my mother survived three attacks.  I have promised my caregivers that this first one does not count.  We are still set at 0.  There will most definitely be a DNR on me after two.

When he told me my heart was ok, sufficiently strong in every aspect, so as to allow lungs to be transplanted into my chest I felt empty.  I asked him a few more questions, made more appointments in a few months and left the office.  Once we got downstairs I could tell I was going to bawl like a baby.  Transplant is hope, and pain and suffering on a scale rarely imagined.  I am to become a FrankenRussell, maybe.  It's the dream.  It's what I am begging for. I did not sleep much last night.  I had very negative thoughts.  I remembered how good I felt, how happy we were, how simple everything was just last February when we knew there was no hope. There was, is a simplicity to that.  One lives, one does what one can, one eventually decides the price is simply too high, and one exits.  It is all so, so simple.

We took another route.  I have to want that transplant.  I cried today, really hard from the heart because I know that the choice I am making is going to be far harder, far more painful, will involve many, many interventions.  I have little doubt there will be a hundred moments that I will wish I was dead, that I had made that other choice. That was why I cried today.  I felt a little sorry for myself.  Silly, stupid, lucky me.  I am not crazy about pain and I know I am signing on for a 10/10 motherload.  I tell the nurses to inject a little roughly, do the iv insertion harshly I tell them what I am trying to have done and ask them to help me get a little bit more used to pain. It's working too.  I am far less sensitive to mild and moderate pain than I was just a few months ago.  Don't even flinch.  Make it hurt, baby. 

I want that transplant because I love Nicole, I need to be with her for a few years more.  I want that transplant because it felt so heavenly to get drenched in the rain yesterday.  I want to write, and write and write.  I should have started this exercise a long time ago.