WHAT IT MEANS TO ME TO HAVE A BRAIN TUMOR:
It means faking a smile when I feel like dying.
It means going to the hospital alone and hyperventilating inside the MRI machine.
It means thanking God each morning that I have another day and cursing him for all the pain I will have to go through.
It means needles and surgeries every 3-4 months.
It means waking up and asking “Wonder what will happen today?”
It means not taking things for granted, like a college education.
It means making out my will at age 19.
It means I am scared constantly.

It means my heart leaps every time I think about it.
It means having support of friends but I am still always alone.
It means, due to side affects, I am reminded of the tumor every day. It never leaves me.
It means facing death and being scared.

It means wanting to give up and wanting to go on.
It means wanting to rush through life; afraid I will not live much longer.
It also means wanting to take things slow and normal.
It means having 4 pins drilled into my head going through radiation.
It means wanting to love a certain man and tell him how I really feel but I am too scared.

It means going to work when I feel ill with a braintumor headache.
It means getting up at 3am to throw up my guts.
It means worrying the tumor is cancerous and will spread.
It means wondering if they will ever be able to take out the “inoperable” tumor.

It means worrying about my vision and if I am a threat to others on the road.
It means making payments each month on a cemetery plot.
It means trying to tell my Mom it will be OK when I die.
It means getting no emotional support from my father.
It means having to rush through my last college semester so I won’t lose the medical insurance.
It means going through a lot of shitty doctors till I find the right one!

It means learning to give myself some time.
It means loving life and hating it.
It means not lifting anything over 10lbs or pushing anything over 20lbs because it might kill me.
It means not being able to play any contact sports--like soccer, my favorite game.

It means having a family that will not talk about your illness if you are doing bad, but will talk about your illness IF you are doing good.
It means being scared while waiting for test results but no one seems to care.
It means having short hair as a result of brain surgeries.
It means enjoying the innocence of a child and loving how they love life.
It means trying to find a job--no one will hire me since I have a brain tumor!
It means never being able to believe I made it to age 21 since the diagnosis was made 2 yrs and 1 month ago.

It means spending hours looking at medical textbooks to see if anything at all relates to my case.
It means knowing all the nurses by first name on the neurosurgery wing.
It means having my mother push me to be normal by when I cannot be---I will always have a brain tumor.
It means being dependent on my father when I hardly know him.
It means growing up faster than others my age.

It means losing friends and gaining new ones.
It means strength and weakness.
It means death, life and LOVE….

It means having a dog who loves me for me.

July 1991

I wrote this piece about 2 years AFTER my diagnosis of my brainstem tumor. At that time, I and the neruosurgeon still thought it was a tumor, a glioma, inside of my head. It was not until 5 years later that he and I realized that it was a "Cavernous Hemangioma". That basically means it was a clump of blood vessels. If the glioma CHANGED to a Cavernous Hemangioma, I do not know, but it saved my life if it did, for I am in the "Land of the Living"! I kind of like to think it did change by itself with the help of Gamma Knife Radiation that I had on October 3rd, 1990!