Damn radiation!

(this picture cracks me up, look at the ash tray full of

cigarettes in a lobby full of children with cancer, things

have changed since 1968!)

Two posts in one day.

Let me try and explain what I know so it will be

clearer to others who follow.

I have what is called

LATE EFFECTS OF RADIATION

I sometimes in my head compare it to

the atomic bomb of WWII.

Those men who were involved in that tragedy

all much later in their lives suffered from weird

medical issues and it wasn't right away that they

figured out that their issues and deaths were caused

by the radiation that existed in that bomb.

Just as those men struggled with the confusion the

medical profession had with figuring it all out,

my medical team have confusion as to help me.

Strange, strange stuff is my life.

So if the problem is not the pain I live with

in my back because of improper formation of the bones

due to radiation then it is bladder issues

because the bladder is now showing effects or

it is intestinal issues because they too have been

nuked by 1968 radiation.

The frustrating part for me is

"fear of the unknown"

if each year brings me new medical issues

and worsening of those I knew existed,

I sometimes, especially when I feel poorly,

become afraid for the future.

Doctors here are at a loss at to exactly what to do

and when I meet a doctor who seems sure that he knows

what to do or doesn't want to hear of the radiation issues,

I am leary of that doctor.

Not knowing where these issues will lead me is scary.

When HOBL and I went to Tennessee last year we

were given the best information about late effects

of radiation that we had ever received.

Yet even then it was not a complete,

"Here is what you can expect"

It was more that they were happy to see me doing

so well and that I had never had any secondary cancers

due to the radiation that was harsh in the 60's.

They explained that there are not many like me

still alive and those that are were not functioning as well as me.

Almost all suffered from chronic pain and they

would not tell me how many of these were still working.

They talked about morphine pumps and no

way of knowing what the future held.

Well, I don't do well with uncertainty.

What they did do for me is confirm that I am not crazy.

This is a true diagnosis with very real problems.

That all these back issues are more than likely due

to radiation. That the intestinal issues are directly related

to radiation that I received.

They warned me that as I got older any medical

problems needed to be looked at through the eyes of

having had radiation.

Yet, when dealing with such a rare issues in a world

that doesn't understand it, it's hard to explain.

My biggest thing is I do not want to become bitter.

I do not want to be the type of person that others don't

want to be around because they only want to talk

about themselves or wear a sour face and no one

wants to speak with them.

I do believe though that somehow I need to figure a way

to share this with others as a sign of hope.

That anything can be overcome.

I am so human though. Just like all others out there,

when I feel well, I can say:

"Yes, look at me a cancer survivor making the best

of my life"

I can share all of this as a source of inspiration.

However, when I am ill, like now, just like others,

I want to grasp at straws, I want to tell myself

that somewhere, somehow, someone has to know

how to fix this. When I don't feel well I can't help believing

that this surely is not supposed to be my life...

When I feel poorly I begin to do what all of us do,

grasp at straws, make doctor appointments all

in the hopes that I am going to find the doctor who changes

my life. It will not happen. When I feel well,

I can accept this. When I am full of pain and confusion

I want answers, answers that I know I will not get.

Why do I take this day to blog all of this personal

stuff? Because as I try and work it all out in what

it will mean to me or how I will come to terms of

acceptance, it helps me to share it with others.

Not that many out there will be able to associate or

even understand it but in sharing it, I pray

that awareness is a key.

As every other aspect of my life, through all

bad things that we have been through, I have

made a promise to share. Because I believe

that in keeping it silent and personal then it was all

for nothing.

Pray for me, pray that as I get older I can live

with the changes that will come.

Most importantly, pray for my family.

I know none of this is ever easy for them as it

seems like every year there is a new problem

new worries, new uncertainties.

Pray that answers about my future, my work,

what medically should be done becomes clear to me.

Pray that I continue with the strength that I need

to come to terms with my life.

The prayer I pray and want most out of all of them?

That I never, never become bitter or stop sharing with

others my life.

Today I am better than yesterday, for that I am thankful.