Tuesday, 28 April 2015


Last week I visited the Dr.  He did his dr thing, shook his head and said, "just keep doing what you are doing'.  He is a fine, highly respected respirologist.  He listens to me and tapers his treatments to fit my overall wishes.  The only thing we are at odds with is prednisone, and even with that we found a compromise.  

One last CT scan to go to declare me cancer free.  That will take place within 30 days.  Immediately afterwards Dr. Poirier and the thoracic surgeons at Notre Dame will bring me in for the big eval.

I may not do it.  I might not.  Right now I am remembering and reminding myself that I do not have to have a lung transplant if I dont want to.  This next step at Notre Dame will not be fun.  It will involve many, many, invasive, painful procedures.  All the stress and load on Nicole to come, its already too much for her,  how can I watch her try to cope with more and more on her own?  

I start gasping and suffocating the minute I wake.  I get cold to the core within 30 seconds and start shivering uncontrollably, which exhausts me instantly.  This started a week or two ago.  We think I came close to collapsing a lung.  I get under a blanket right away. Nicole gets me tea and my meds and cannacaps.  The cannabis keeps me alive and has been doing so for a couple of years now. Nothing else slows me down enough to maintain control while I am trying to remain active.  The side effect is laughing.  I can live with laughing. 

Two days later I pick this up.  The whole world is upside down.  I received the CT scan date, May 24, a Sunday, earlier today.  I was really upbeat for about an hour and then everything changed.  The whole reality of what I am about to face hit me hard in a flash.  I thought I knew what I wanted, where I wanted to go.  I do not.  I do not.  I am not filled with doubts.  I am filled with certainty.  I do not want it. I do not want a lung transplant.  When The Dr. told me I qualified for one twenty five months ago I was very sick, I was enduring heart attack after heart attack on my own dismissing them as breathing attacks of some kind.  I knew nothing.  My quality of life was poor.  I had no coping skills.  Two years later, I have gone through months of training and therapy, mastered breathing skills and I am very strong in every way other than my dead lungs, more fit in many ways than I was twenty years ago.  Everything still works.  I never dreamed I could be as happy as I am now, almost every second of every day.  Euphoric, in the moment, never out of now.  As I think I wrote back last August, this truly is heaven on earth.  I have everything I need or want in this moment.

When I met the surgeon in February 2014, he was wonderfully, brutally frank with me.  He told me it all would come down to my quality of life. That would be the deciding factor after all the physical and mental workups and evaluations.  Quality of life.  I am not sure anymore if I want to give up what I have for what I might gain.  I was when I woke up this morning.  I did not see this coming.  It has hit me hard.  I thought I had it all figured out.  I don't, and I am afraid. Afraid of messing up what I have now, chasing after potential happiness that I have in my hand already, missing all the moments that could have been while I focus and fight and think. I have not had to fight or focus or think for a long time now.  I'm told that I am a great patient.  I do what my Dr and I agree on doing.  Always.  With great enthusiasm.  My orders are to continue eating, sleeping, exercising and playing.  I can handle this. I find myself with a quality of life I never would have dreamed I could achieve.  I am terrified, right, now of risking that.  

A couple of remarkable things:
On the same day that I fate decides to hammer me with uncertainty over if I want to seek any more treatments or just let things be, a good friend with a reoccurring cancer freshly discovered, again,  is facing the same dilemma.  He has to decide fast if he wants part of his face removed. He does not think he does.  We talked a lot today.

I started playing a game last year and found a family.  Two of my clan friends are flying over from Europe, and a bunch of others are flying and driving up from various points in the USA, to have a week long party at my house in a couple of weeks.  I pinch myself over that.