(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.
