1 year ago today, i finished CK. On the evening of my first treatment my daughter purchased pints of ice cream and added home made labels to each with radioactive man as the "headline". This started as a joke --- i commented that even a kid getting his tonsils removed gets ice cream while a brain bugger getting zapped has no such protocol#$%^#&$. thus radioactive man was born!
Looking backing back over the year ... i have to admit it has been one heck of a ride. I fired the first Ck team (Before treatments started) and the second team made me mad as can be on multiple occassions. I had the dreams of it all going easily. then i ran into the reality of people. i ran into life. i had the following:
being told only a portion of the truth before CK
lead to believe that hearing preservation was a high priority and the Dr later said - he knew that he was burning the nerves.
the wrong MRI being ran
Poorly placed IV's
being tired of seeing medical people
no one that was willing to talk- explain - listen - at hospital and Ck center
having bad head aches
having a stiff neck
a month of fatique
the Dr giving pain meds rather than to deal with the root cause - the narcotics flowed!
getting in to see the Dr's was a problem
a misread MRI that said that the tumor had grown to be huge - see surgeon about removal - Now!
the joys of steroids
gaining back 40 pounds that i had lost the year before - Weight Watchers
going form 80% word recognition to 0 in the AN ear. it is gone!
having an ENT read to me the risks of GK - saying that this is close enough information for me.
to having about 25% of my AN side of the face being numb ... here to stay!
i got to be angry!!!!! not at the tumor - but at the "medical people"
i had complained to the hospital's patient action group and The president of the hospital .... yes i got a call of explanation from the neurologist - but the level of service remained constant - what i was not Happy with. nothing changed for teh better.
on my last visit to the neurosurgeon, I told him what i thought of him, the services provided, etc. he offered to send me elsewhere to have the tumor removed. he tried to placate me. he just made me madder --- if i had another option of "local" facilities that would care for me - i would have gone in a second. I still would today.
then he said words that has led me to change change my attitude - not then but later as i thought about the situation. he said that i am going to kill myself via a heart attack, etc unless i get on with life. count my blessing that i only ended up as i am, not with greater issues to deal with. he did not convince me - he just planted that seed - get happy with your life. i have restled with this for 3 months now ... i have to say that i have changed my course ... i had to get on -- it was eating me up.
he said this as he told me that i need to do what ever i needed to as he was just going to see the next patient and his life was going on.
i am trying to concentrate on the good people ... i had to be thankfull for good insurance coverage, the people that helped us through it, the good thoughts from many people, the prayers said and answered, for my daughter, and more so for my wife. she is the best!
i am struggling some days to keep these thought --- but i am striving to do so for me! so this is why i am celebratign radioacitve man's birthday and life
HAPPY BIRTHDAY!!!!!!!!
