Tuesday 10 September 2013


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.    

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