Wednesday, 27 August 2014


I have so much to tell you but the moments are far too much fun to be able to stop a minute and write thoughts down.  

The wonder, bliss, joy does not go away.  It intensifies.  Nicole feeds it constantly.  She sees!  She understands!  Such wonders, I tell you, fill my universe, every moment magnificent.  

I stepped out of my circle maneuver yesterday long enough to call a notary.  The experience was a pleasant surprise.  Putting my affairs in order and leaving Nicole in the best position possible will only cost a few hundred dollars and be painless.  The moment of my incapacitation she will have full control of our assets and my fate. She knows what to do.  My world is Nicole.  Everything is Nicole. If anyone out there thinks it was ever something other than Nicole, you are mad.  Nicole.  

I see her so clearly now.  I understand her now.  She made me.  She showed me.  By example. Nothing else  With a smile.  Blessed Nicole.  Unconditional love.  This is heaven.  We are one.  I thank you Ma Belle for everything!  

I am stronger today than yesterday physically.  I work out mornings with great joy.  My body is still magnificent!  I play.  I stay in my tub afternoons, hours at a time, trying to think of a reason to get out, and cannot, so I refill and stay.  Spoiled rotten :)

My doctors want cookies.  No kidding.  They fully approve.  Dont even try to guess which.  I eat a lot of cookies.  I keep laughing and smiling and working and doing and playing and stuff.  Some day soon all sick people will eat cookies. They help make it way bearable for me at least.  

I love this ride to bits!  I am really becoming as a child again.  Why fight that?  Once a man, twice a child.  It is the way.  I might even get a bloody restart with fresh lungs!  Common now.  I don't suffer, I don't have pain, I am not afraid in the slightest, I am having a blast each and everyday just movin and groovin and being.  Doctors orders!  Perspective baby.  Get some.  So much love, kitties, such stuff you would not believe.  All day everyday.  Right there!  Oh man, every sunrise I tell ya!

I think I will make it to spring.  I think my heart is ok enough.  I think the cancer thing is no biggie.  Thing is though, I never think about those things.  Ever.  I had to concentrate quite hard to formulate the idea to write it actually.  No control . Butterfly.

Don't be scared!  I know its hard, but don't be.  

I am doing just fine.  Nicole's got it best she can.


Thursday, 21 August 2014

Chill day

Have been taking prednisone for about two weeks now.  I did one burst of ten days, tapered dose starting at 50 mg down to 5 mg then stop.  The stop lasted two days and I started to feel poorly again. Superman was not in sight.  So, I followed the new action plan that calls for 50 mg for five days followed by five days of 25 mg.  Half way through that now.  I feel okish but now I need to be very careful about pred dependency, too soon.  This very well may be a silly notion cause everything is pretty much now, now. The deep long lasting infection was not killed by the avelox.  It was beat up though.  I have virtually no voice and burning sensation deep in my lungs.  It's still there.  Today I better write my nurse, advise and get council.  This is no time to screw up or make guesses.  I do feel alright, considering.  I do not feel or think of myself as sick most of the time.  The therapy and training is paying off huge.  I do not exceed my capacity, unconsciously I seem to monitor this all of the time, and that lets me be blissfully unaware of my broken body.  

So why do I feel so blissful lately?  It is both simple and complex, but mostly simple I recon now.  I made many poor choices, seemingly,  in my life.  I always thought that.  I strove hard to understand why all of my life, an understanding that eluded me.  I live an examined life, I always question myself, my motives.  

I believe now that I did one thing right, one thing perfectly without ever realizing I was.  It was the big one though.  The really important one.  The one thing you need to be to find the peace you knew at the beginning.  Complete the circle.  

I was true to myself.  Always.  Never once did I waver through my entire life.  I could not.  This was my saving grace.

It also ruined many things.  Lack of compromise does that.  

I would have screwed it up had I known. :)

I got my headaches this morning, we all do.  Mostly I am over the moon with joy.  I was up again today waiting for the dawn of a rainy day.  Awesome.

I gained ten pounds in a week, almost back to what I have to be, around 115 to 120.  

I am eating huge.  Drinking huge.  Moving huge.


Wednesday, 20 August 2014


When I left the hospital last week I was in a state of shock.  While I have long known that my disease could strike me down more or less any time, I was not really prepared nor expecting the meeting that Nicole, I, my Dr and care nurse had.  It was blunt and it left me reeling somewhat for about a day.  

Full acceptance of your impending death is not a straightforward process as I have found out over the last year or so.  Being told that I have arrived at the end, and that extraordinary effort is required to sustain life for another six months is surreal and at first, terrifying.  Transplant dreams. Dreams of life. The terror, the fear was short lived. Hours.  I knew. I know. Nicole knows. Digested.

I woke up the next morning so early!  The next one too, and all of them since.  I doubt it will ever change now. I bounce out of bed. Alive!  I have finally found heaven.  I am in it.  Here. Now.  All around.  This is it. 

How about that, eh?  I am rich beyond all measure.  I have no regrets.  I have made all the amends my soul requires me to make. I faced my demons. I am immensely proud of the man my life produced. There is no bullshit in the place I live in now.  If I was not at peace now I would be immensely fucked.  The demons would be tearing at me, waiting to consume me.  Ha farking Ha.
Peace and light.  No sign of anything but laughter love and the immense circle of life in my mind and outside my window.  That is all there is!!

 Bill dudes, go away.  Harsh not my mellow I care not.  Equity we got.  When I get around to floating over that way I will take a look, maybe.  Really :)   

I feel good.

I called a couple of people today to come and visit.  They both said sure, next month!  Wow, eh?  Whats a next month? lol

Love love love

short bursts of words and thoughts for a few days

Nicole and I are beaming in our little home looking at the meadow loving cats and each other to bits  xoxoxoxoxoxo

Wednesday, 13 August 2014

Scarey Place

Yesterday was something else entirely. I went to the Jewish to see my pneumologist and my support nurse.  There was a very frank discussion, all the cards on the table.

The end of this journey is far closer than I wish it was.  It is all in my hands now.  Do I have the will to keep going or not is the only question now.  

I accept it and will try with everything I have, everything I can do. I will not stop moving and trying.

I dont know what the results were from the echocardio last month at Notre Dame. I thought I might have the results yesterday but they are not in yet. Notre Dame might or might not call me back over it.  Does not really matter though. Next spring is the time I might get through that window and get new lungs.  Not before.

My weight is dangerously low.  We started dealing with that yesterday.

I am having some kind of exacerbation, an infection somewhere, and am on the avelox and pred now.  The drs say I handle my action plan well and they loaded my scripts up again.  If I am still in this state in a few days or if it gets worse I call and we try to figure out what to do.

Nicole and I made sure we are on the same page regarding resuscitation, intubation and all those unpleasant things. There is an urgency now about seeing a notary or a lawyer and give Nicole my share of the house, give her power of attorney over my affairs. Money we don't have but somebody just wont get paid.
I need to do this ASAP.  Not asking for any here just writing as it is.

I had a bad nights sleep.  I woke up knowing I had to write and get out of the state of mind I was visiting.  I am ok.  I knew everything already.  Its a good thing to have it up front and easy to see. Work to live. Don't do the work and die very very quickly.  Work hard and if you are lucky you might stay alive long enough for the miracle.

I am ready to fight for my life with everything I have.  I am fighting.

I need a few more days I think to digest this and get refocused. 


Sunday, 10 August 2014


The last five or six weeks have been full of difficulties. None on their own serious.  All of a sudden my lungs became far less elastic, I can feel it.  This caused me to run into serious breathing difficulties virtually all the time, from any movement, any emotion.

At first I did not understand what was happening to me.  I did become quite afraid for a period of weeks.  Fortunately I did not get depressed, not in the slightest.  I am more thankful for that than anyone will ever be able to understand. 

I adapted to slowing down even more. Glacial.  I never stopped moving, doing.  Not one day.  Doing that was the hardest thing I have ever done.  I know I have to keep moving.  I will die within weeks if I stop.  I just know it. 

We kept cheerful, laughing all the bloody time at everything.  Everything. 

I had to withdraw into myself.  Focus all my energy on me here and now.  Hence the silence. 

A week or so ago I had a flash back from pulmonary rehab that I think has given me a lot more time.  Enough time.  I am now virtually certain I am going to be on the lung transplant list, fast tracked, sometime next spring.  I have already been called back to Notre Dame.

The trick I remembered was ratings.  One through ten chart.  How breathless are you at this instant? 

I remembered the drills.  I bought in wholesale.   I conditioned myself over a few weeks.

There is a tiny part of my brain that knows the number.  One through five keep going.  At seven, stop in place.  At eight go sit down for twenty minutes.  Past eight and your are fucked, and maybe on your way to the hospital in an ambulance. 

Easy peasy!

Back to work.  Back to being in control. 


Doctors week this week.  Feeling quite poorly today and for the first time since January I will invoke action plan and hit the prednazone.   I am about one hundred pounds.  Hitting the fats now.

Love everybody