I wrote this about six weeks ago but I was afraid to post it.  My ego told me not to do it, not to show weakness or pain.  I am a little less afraid today to show myself.


I am my disease.

My disease shapes me.

I ignore, tune out pain.

From my first awareness in the morning until I fall asleep I have to control all of my breaths, all of my movements, all of my emotions.  I lose my breath otherwise, instantly.  I think about lifting an arm before I lift it.  Do I need to do this?  Is there a better way to do this?  Should I be inhaling or exhaling when I do it?  How hard should I exhale and for how long?  When I move I have to stop and recover before the need is obvious, otherwise it could spiral into a breathing attack which could literally be fatal.  The pulmonary rehab training is second nature now.  I would be dead without it.  No doubt in my mind about that.

I do feel alone in some ways.  I think you ultimately die alone.  I want to share my unknown but known fate.  I want to know why I want to, as well.  I want to know why virtually no one wants to talk about death, especially when it is personal and up close.

I want to strip off the bullshit.

I like what Roger Ebert has to say about knowing the time frame of your death is not known but palpably close. "Many readers have informed me that it is a tragic and dreary business to go into death without faith. I don’t feel that way. “Faith” is neutral. All depends on what is believed in. I have no desire to live forever. The concept frightens me. I am 69, have had cancer, will die sooner than most of those reading this. That is in the nature of things. In my plans for life after death, I say, again with Whitman:"

I bequeath myself to the dirt to grow from the grass I love,

If you want me again look for me under your boot-soles.

More distressing news.  The bone density scan shows evidence of hip damage.  I will need to go see a rheumatologist, again.  The prednisone is clearly speeding up a genetic disposition towards osteoporosis.  I was diagnosed with degenerative disk disease in the lowest 3 vertebrae about six or seven years ago.  We elected to exercise and stay as fit as possible rather than treat it with drugs at that point.  I think I have to do something now, the pain is debilitating, severe at times.  The shoulder, neck whatever pain that drove me to The Dr. last week is probably related to skeletal issues.  I was sure I would be dead before I had to worry about the cost to be paid for the steroid use.  Considering that I have been on extremely low tapered doses of steroids tells me that I had better get ready for what is to come.  That will no doubt be more steroids.  Related to this is horrible, disfiguring cramps that I get in my hands, feet and calves.  The muscles knot up very tight instantly.  It hurts like hell.  I think it is related.

The medications, prednisone and symbicort and Spiriva all are contributing to a rapid decline in my vision.  I can't say exactly what the deficiency is.  I feel like I have less pixels by the day.

I am afraid of a lot of things.  I am afraid we will fail financially.  One straw will see us lose our house.  I cannot meet obligations.  I have no potential for new revenue that I can see.  I breathe deep.  Practice being in the moment.  Tell myself that it is not important right now if I am powerless to affect any meaningful change.  I am afraid that the plane crash that is my physical state will make me want to end my own life before my body completely wears out.  I am afraid that I am a drama queen and should suck it up and shut my mouth and get back to work.  

I wait.  The cancer grows.  In a month or two they will measure it.  A month or two after that they will tell me what is next.  My breath will decline.  I will manage.  I will enjoy.  I will not lend this kind of focus to my disease very often.  Sometimes, though, its a good thing to do, and then move on to a flower or a cat, or making something new in the kitchen. 

Every day is a good day.  I find joy most certainly in every single waking hour.  I laugh many, many times a day.  Nicole is cheerful and always joyful.  The cats are something I spend hours with every day.  I don't think much about tomorrow.  Tomorrow is when I very well might die.