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.  

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.  

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.  

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.  

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.

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.

I have a really important appointment with my old friend Dr. Most Interesting.  He is a heart surgeon who dabbles in acupuncture.   He is a very cool guy.  I imagine he is hurting now because Syria is his home, even though he is a man of the world.  I can't understand the scans nor the reports.  I do notice a number comments such as "this is very odd," "I have not seen this before" and some other comments that seemed to leave the gentleman perplexed.  While strong, all of my organs are aging at a more rapid rate than normal.  One more little complication I can wave bye bye to that transplant.  

Think of me a little tonite if you please.  I could use all the help I can get.

To sit at my keyboard today is not the same as it has been since I started.  To rip one straight from Dexter, I got me a dark passenger (that would be depression) at the moment.  It has been many years since it was more than a shadow.  It's just a part of me, I am not under any illusion, and I face it.   Today it is no shadow.  It blocks out the light.  I know the light is there, so I have reference if I keep faith.  The dark shadow tries very hard to stip away the faith.  Faith, you just hold on to, once you learned the trick. I got a good, strong, tenuous hold. :)

It's all like that.  Everything.  From the biggest to the smallest of the small.  That dark shadow will make it far too complex, make it impossible, make it unlikely, make it in no way double fucking possible.

I felt it when I was coming to consciousness while intubated.  The notion that anything positive was going on would take a good long while to process.  That of course represented no problem per se because I was on the outer limits of that propofol Mike Jackson stuff.  In what seemed to be a relative short period of time, and with a surprising lack of discomfort, it did not reach pain level, out came the tube and I felt like I was being reborn.  It  felt so wonderful.

I'll publish this and then just add to it later.  I am not posting to FB for a while.

I don't know what to write about today.  I am very in between Doctors appointments, thought they will come fast and heavy starting tomorrow.  I will pick up the phone and ask for lifts and some help.  I will not be stubborn or pretend that everything is ok.  I hope I have peace today, something that a estranged loved one has been determined to ruin for the last few days. I have no means to stop this, and no one to help me in the family.  I am as sad as I possibly could be.

I am going to have a cookie and see if I can get my thoughts more positive.  All I feel right now is hate staring through me. I have felt that for days now.  Mission accomplished, huh.

I will be back and I will be ME.  Gimme an hour. 

I am sure that virtually every medical account is plein de merde. I will get my charts somewhere along the line and start making this semi honest. V.2.0


Last week, one morning I came out of my office with a revelation.  I needed to tell Nicole before I lost it.  The thought was perhaps original or maybe I read it somewhere and stole it.  I don't really know for sure.  The revelation was that I was hard at work at having a "polite death."  That hit me like a ton of bricks.  Who the fuck ever worked at having a polite death?  What was the point?  You die they cry.  Pretending that you are cool with dying don't ease anybody's pain.  It is fucking absurd to the max.  We laughed and laughed and laughed.  Right.  You lie over there and die, politely.  Don't make waves.  No unpleasant truths.  I still have so far to go, so much to learn, to see, to understand.  I know nothing about myself.  I am an enigma to me, and, time is running out very fast.
I am very sad today.  I feel lonely and alone.  Lana came to see me and Nicole called me a lot.  She needed to rest she was exhausted.  My aunt called.  She is my Mom's sister.  She is one of those unconditional love types. Like my mom.  Nicole is just about there too.  She could not love me more.  Lana is like that.  The last one I have, I think other than marriage and a few bowling nuts who have promised to get my ashes under the greens for me. :)



I am very weak.  Very little stamina.  I can get out of bed into a chair with some help.  Early Saturday morning my blood pressure went out of control.  Blood pressure, pulse everything way north of 200.  Let me tell you two bouts of that in one week and you got some mighty sore ribs and a heart that feels like its been punched over and over again.  Also pretty sure I broke a couple of ribs coughing a couple of weeks ago.  Was hardly worth mentioning at the time :)
  

I miss Xamie, I have no idea what's going on in the places we keep our eyes on.  I don't know what those asshole Americans have done or are going to do.  I want to tell everybody I will be back and I love you all.  I miss Monica, Ellim, Stacey, Gareth, Paula and a whole lot more of you.   

I miss my left wing politics, my steampunk, Monica's Lego adventures, my photographers, the scientists who teach me every day.  God how I miss you all.  I Miss my posts, your comments, that connection we share.  

There are tubes coming our of me all over the place.  Blood gas monitor, 3 iv's, many many wires hooking up to the ECG as well as the ventilator on standby.  Moving around in bed in an immense technical challenge.  The steroids have turned my skin paper thin and my arms are both red, raw and bloody, the right one with a very large clot that looks like a spilled bowl of red jello.  I am getting additional prednisone, instead of 15 mg a day its now 65 and there are also other steroids in the iv drips I am still on. 
Today is Tuesday and it may be the day I get to go home.  I hope so.  I have the second part of the nuclear stress test this morning.  At the same time as I am pleased to be going home, I am afraid, too.   The breathing attacks, the tachycardia  are painful and so distressing and difficult that death soon seems an enviable option.  My life was saved a second time on Friday morning.  A boatload of equipment, respirologists, two nurses and a Dr took 8 hours to keep me alive.  I don't have any of that at home.  Brave Russ shivers just a little at that thought.

Since last week I have been brutal, if loving towards Nicole.  Her support rug is being pulled out from under her.  While I know how hard it is for her I cant let that touch me.  She has to get her intellectual shit together.  It took us so long to get as far as we did in the three years we worked hard together at therapy.  For maybe five more years she worked off and on with crafts.  That shit stops now. Many, many hours a day of pure intellectual work along with communication skills.  She is going to script, rehearse and control every phase of her life even if it makes her hate me.  She can thank me twenty years after I am gone.  She joins the Canadian Aphasic Marine Corps half hour after I get home.  There will be tears.  There will be anger.  It is the only way she knows how to learn.  I love you so much, Nicole.  Enough to make you hate me if it will help you in the coming years when I can no longer speak for you.


It is Wed morning and I have been here for a week, now.  I feel ready to go home now.  I am not sure they will let me because they do not seem to have a grasp on what caused my tachycardia  twice.  I suspect after a lot of thought that stress is playing a major role. I hope its today though.  I am homesick.  
My stamina is coming back, fast.  My vital signs are all in good order, the only give away is my pulse rate that is above 90 sitting.  I am used to this, though.  I am the luckiest little fucker on the planet.  I get to die twice in one week to no ill effect and probably without even losing a step.  I have been walking on my own since Saturday.  I am now called the healthiest person in ICU.  I do six minute walking tests all day around the ward. 
A lot of my family and extended family has called me to wish me well, (and one to wish me as horrible a death as possible, ideally at his hands) to say lets get together before its too late.  A couple of weeks ago I think the idea would have been abhorrent to me.  No longer.  Five minutes with my cousins.  I don't want to live hidden away.  I will get a walker.  I will get a wheel chair.  I will adapt.
I am afraid of dying.  I am afraid of the horrible pain that my disease sometimes produces.  Rib crushing, lung collapsing, heart destroying wracking pain that lasts for hours and hours at a time. This is all new.  I used to describe my disease as being relatively pain free.  This is no longer the case.  The spasms crush your ribs, crush your lungs and your heart gets pounded and pounded until you really wish you were dead.  

I am so afraid for my Nicole.  I have had to do what I have had to do things to keep us afloat.  The attack last Friday night took away any patience that I may have had towards the necessity of protecting her.  

It is Wed night and I am up in a ward awaiting a cardiologist to sign off on my discharge.  I have been here for about 7 hours now. ICU needed the bed, I really am no longer in need of 24/7 monitoring.  ICU had no cardio this morning so after all my nuclear stuff they sent me up here.  I promptly found out there was no cardio on the floor and the chances of their being one today not so good.  A nice Russian Dr. came to try to exercise some patented patient control on me after I laid out the story and, after one week of being a very nice Russell I lost it.  I savaged her up, I savaged her down, I threw darts above her head once I realized she was not even a cardio.  She is the GP.  I tossed her at the same time as she figured she would make her escape.  

Life can be interesting if you play from the heart.  She came back.  Sat down.  Told me the cardio would be by to see me and check me out the second he/or she possibly could.  That might only be tomorrow.  He is short staffed down in emergency and they seem to by dying on him.  I figure I don't come in first. She was night and day.  She sat next to me on the bed, took my hand and spoke softly to me.  Answered my questions and then accepted my continued hostility at not having been instantly understood and respected.  Her focus was now me, her patient.  I fell in awe of a true physician.  Lord knows what she walked away from initially only to have me blast her because my day was not going to plan.  She had clearly read my chart.  My chart takes a Dr over an hour to familiarize themselves with it.  

The Dr. had devoured my chart.  She came at me from two different directions.  Lung transplant.  Where exactly were we in so far as the listing went?  No, I told we were close now to filing, making a case.  She make it clear that she is affiliated with Notre Dame, in some fashion.  She knows the rest of my team, Dr. Fox, Dr. Garfield, Dr. Affaki, Dr. Luterman and a couple of others who may bolster my case. There is also a new program out of the Jewish experimental micro targeted radioactive therapy.  

Hope they like me, think I can offer science something.  Can I convince them that there is some not small amount of gravitas in me, that when I say please put me on that list I will devote myself to science first and foremost.  No amount of suffering , no amount of pain will stifle my desire to make the end of my life a gift to humanity.  

I want all of my medical records from all of my doctors going back about ten years.  I don't know the legal implications of this in Quebec, the right to documents.  I am not looking for anything.  I want to understand better and be able to write more concisely and to better evaluate my options as they come up.

 I have to call in family.  Nicole's brother in law, my own.  We are more or less solvent but I cannot even cope to look at a bill never mind manage a ledger.  This has been going on for some time.  It must stop.  I must make any intelligent steps towards having some kind of burial insurance.  I need to look at all of Nicole's long term options.  Just because I want to die at home does not make it the most sensible thing for us as a couple.  The end is nigh, it is time to put away foolish things and act like a man. 

I ain't getting signed out tonite, the cardio just did not show.  This floor is hell.  I went to walk a buddy out and quickly found out I was locked in.  That took five minutes to fix and I felt like my claws were flexing a bit.  I liked it.  I asked for the non existent rules, listened to their explanation about all the alzheimers and dementia patients and people with noxious diseases who keep walking up to me like the walking dead.  To say the least I am fucking mad, mad, mad.  I advised the nurse station to take a good look at me and make sure that fucking door is snapping open when I get there.  Where I go and when I come back aint their business.  They moved a guy in next to me whom I swear snores at more than 100 DB.  These evil motherfuckers offered to sedate him more for my comfort.  I said I figured some ear plugs for me and about 10 mg or rivotril ought to do the trick.  Baring that I am going to sleep outside with a blanket.  Call the police.  All this shit because any fucking cardio who can read did not have the balls or the ovaries to stick their ass out to help someone over the course of 17 hours.  I will learn to stay cool, but I will remember how to be the smartest person in the room, too.  I do that real well.  Nobody ever suspects that oh so effeminate, cowardly useless all around POS.  

I don't know if I will get over my current sense of mortality.  Of course I cannot predict my death at this moment or any other, anymore than anyone can, I have already started to broach the subject of end of life and hospice assistance and planning with Nicole and other people.  Very reassuringly they know how much I want to live.  They witnessed to horrible and needless suffering that my mother endured, and all have made clear that they expect no such act from me.  When the time comes, I will take my own life in the way of my choosing  I will also soon involve Nicole's sister Danielle and Pierrot.    

I am very sorry I did not follow my normal practice when writing with strong emotions when I composed this blog entry.  Normally I do not publish anything that leaves me with strong feelings until I have a chance to review it the next day, or sometimes have a writer I respect review it for me.  I did not follow that practice that night.  I just published a chunk of the accumulated writing from my ten days in the hospital.  

It was wrong and I apologize to the people who took offense.  I feel very badly about it.  The offensive parts are removed.  This will not happen again.  I will not bother you again. I will call my Dr's tomorrow to ask for some emotional support to make sure that I am as ok as can be and you will not have to suffer any further outburst from me. 

I offer no excuse, wrong is wrong.  My only mitigating circumstance is I was still so drugged from the hospital stay which had ended the day before.  I tossed out a med that I felt was making me crazy, rivotril.  Nicole tells me I was literally falling from wall to wall to wall while navigating around the house until Sunday.  My Dr. was pissed I was issued it.  This also was an emotional and inappropriate reaction to something that I have allowed to cause me a lot of pain over a long period of time.  This is no excuse.  I did a bad thing.  I am sorry I did.  I regret my action and apologize. 



I am sure that virtually every medical account is plein de merde. I will get my charts somewhere along the line and start making this semi honest.

I lost about 26 hours this week.  My lungs collapsed somewhere around 3 AM on Wed. morning.  I remember seeing 3:01 on the digital clock when I gave up on alleviating my breathing distress by sitting up in bed.  I am fairly lucky since most folks with lungs in my condition have to sleep sitting upright, I normally do not.  I could not recover my breath that way so I felt I had to get up.  The distress turned into a major breathing attack, worse than any before.  I actually got it under control for about 5 minutes before it launched off again at 5 AM.  This time Nicole woke up and she called 911 right away.  I lost consciousness before I was loaded into the ambulance.

I was treated for a heart attack as someone with COPD and intutubated at about 6 AM yesterday.  The tube was removed at 11 AM today, 29 hours later.  I did not have a heart attack.  My heart simply stopped, went into some other rhythm, or something I do not grasp yet. They had to sedate me more than is normal.   Apparently I was violent and extremely difficult to deal with.  I regained consciousness at about 9 AM this morning.  What woke me up was the feeling I was being water boarded, and I pretty much was.  I could feel the tube down my throat and it was suffocating me and on top of that they had a screen over my face and misting ventolin and other meds down the tube.  As I tried to move I realized I was restrained in the most complete manner you can possibly imagine.  I only could wiggle my toes.  Not even my fingers.  They were restrained, too.  They left me with no means to communicate.  I tried to use my toes but my reputation preceded me and they simply presumed I was trying to hurt them and made jokes about it.  I tried to point with my toes to the water jug.  Please wet my lips.  Nothing.  

Finally at about 11 AM the Dr came in and ordered the tube out.  I was so fucking relieved.  He later told me there was no real need to have ever intubate me.  Nicole told them I had severe COPD, the ambulance drivers told them I flat lined in the truck, they had actually stopped because of it.  Since they were close to the hospital the senior guy told them to finish the delivery, and they did.  They got my heart back into rhythm and because I have severe COPD they intubated me.  The lab results that proved I did not have a heart attack took 29 hours to get into the Doctors hands.  29 Hours unnecessarily intubated.  29 hours in a drug induced coma.  Does this make It sense?  Do not get me wrong.  I don’t know for sure a mistake was made, but somehow I think you can determine if someone has had a heart attack faster than that.  The test the Doctor told me about measured enzymes that had leached out of my heart on account of the trauma of not receiving O2.  The heart muscle had received virtually no damage.  (I have a report for my cardiologist and in fact there has been some manner of damage, we shall see) He told me today that I have an incredibly strong heart still. 

 Tonight, sitting here in ICU in my bed, I am both glad they saved me and glad they did not kill me.  
Today I feel quite odd, emotional, often sad.  I cried earlier for a minute, something that has only happened a single time since I got sick.  That was the day that Nicole and I realized that my lung disease was a major deal and destined to kill me at a young age.  I never did cry again a single time again until today.  Today I cried for what I have done to myself.  My parents provided me with a magnificent powerful strong body.  I spent my life thinking it was a weak, small, useless and unfair body.  Instead of being happy I chose to be unhappy.  I chose!  It has taken imminent death for me to even get a glimpse at the damage my ego has caused to my life, to my friends, to my family over the last 35 years.  

I have hidden myself from the world for the last year.  I do not go out.  I do not call my old friends.  I think I have chased everybody away.  This is wrong.  This is a waste of a precious gift of life.  I should suffer publicly, openly and show my love for everyone and everything good in this world.  I should cry over my fate until I need to no longer cry.  I should allow myself to be weak.  

The care I am receiving is beyond compare.  I am in a 12 bed ICU unit with a nurse for each bed and a half a dozen support staff and Dr's on hand at all times.  The technology is mind boggling.  My hear Dr. spoke to me yesterday and today he ordered up nuclear imaging for my heart.  He knows I do not need that test for what happened to me a couple of days ago.  He knows I did not have a heart attack.   He ordered the test to support my lung transplant application.  He was so versed in my chart he was able to tell me that my cancer had not grown at all!!!  He also was versed in the lack of transplant/cancer protocols in Quebec.  His opinion is that it is on a case by case basis and I think I got one or two more excellent Doctors on my side.  I am going to get that transplant.  I am going to get another little shot at life.  I am.

No longer will I accept putting others first.  No more.  No more will I care what anyone thinks of me.  Not one shit will I give.  I spent my life thinking about others first, and, fuck you to the end of time if you do not think this is so.  Stop reading and go away now.

Last week, one morning I came out of my office with a revelation.  I needed to tell Nicole before I lost it.  The thought was perhaps original or maybe I read it somewhere and stole it.  I don't really know for sure.  The revelation was that I was hard at work at having a "polite death."  That hit me like a ton of bricks.  Who the fuck ever worked at having a polite death?  What was the point?  You die they cry.  Pretending that you are cool with dying don't ease anybody's pain.  It is fucking absurd to the max.  We laughed and laughed and laughed.  I still have so far to go, so much to learn, to see, to understand.  I know nothing about myself.  I am an enigma to me, and, time is running out very fast.
I am very sad today.  I feel lonely and alone.  Lana came to see me and Nicole called me a lot.  She needed to rest she was exhausted.  My aunt called.  

  
It is Sunday today, August 31.  I am thinking a lot about the time on early Wed morning when my heart stopped.  There was nothing from my point of view.  No light, no warm glow, no mother or father.  At my desk I lost consciousness   Some ten minutes later my heart stopped.  There was nothing.  An absence of being.  I cannot decide what my beliefs are, as far as life after death.  If forced to I would say that we simply cease to be.  We go back to the state of nothingness that we were in prior to being born.  Yet, that entire cosmic miasma as unlikely as anything else.  I have no glimmer.  Given a choice I would like to be me, one more time, see how much better I do this time.  

I am very weak.  Very little stamina.  I can get out of bed into a chair with some help.  Early Saturday morning my blood pressure went out of control.  Blood pressure, pulse everything way north of 200.  Let me tell you two bouts of that in one week and you got some mighty sore ribs and a heart that feels like its been punched over and over again.  Also pretty sure I broke a couple of ribs coughing a couple of weeks ago.  Was hardly worth mentioning at the time :)

I had to be ventilated, again for about six hours.  It was really terrifying.  For the first time ever since I got sick I really wanted to die if dying would stop the attack.  I would have pushed that button.  The two nurses with me kept me together enough so that I could try to follow instructions. One of them would not let my hand go.  She gripped it and gripped it and squeezed and talked to me with so much love and compassion I cannot begin to describe the experience.  These women and men in this ICU unit are truly cut from special cloth.  Every single one of them.  From the lowliest to the chief they demonstrate what teamwork is all about.  They do it with joy and compassion.  The whole event lasted about 8 hours, it felt like an infinity.  Getting all those tubes out of your throat is better than sex.  

I miss Xamie, I have no idea what's going on in the places we keep our eyes on.  I don't know what those asshole Americans have done or are going to do.  I want to tell everybody I will be back and I love you all.  I miss Monica, Ellim, Stacey, Gareth, Paula and a whole lot more of you.   

I miss my left wing politics, my steampunk, Monica's Lego adventures, my photographers, the scientists who teach me every day.  God how I miss you all.  I Miss my posts, your comments, that connection we share.  

There are tubes coming our of me all over the place.  Blood gas monitor, 3 iv's, many many wires hooking up to the ECG as well as the ventilator on standby.  Moving around in bed in an immense technical challenge.  The steroids have turned my skin paper thin and my arms are both red, raw and bloody, the right one with a very large clot that looks like a spilled bowl of red jello.  I am getting additional prednisone, instead of 15 mg a day its now 65 and there are also other steroids in the iv drips I am still on. 

Today is Tuesday (hah!  they let me out Friday) and it may be the day I get to go home.  I hope so.  I have the second part of the nuclear stress test this morning.  At the same time as I am pleased to be going home, I am afraid, too.   The breathing attacks, the tachycardia  are painful and so distressing and difficult that death soon seems an enviable option.  My life was saved a second time on Friday morning.  A boatload of equipment, respirologists, two nurses and a Dr took 8 hours to keep me alive.  I don't have any of that at home.  Brave Russ shivers just a little at that thought.