Smile

A little over 2 years ago I was diagnosed (finally) with a brain tumor.

After complaining of headaches, hair loss, fatigue, no menstrual cycles and being on an emotional roller coaster that seemed to have more downs then ups… I’d been through at least 6 doctors trying to get some answers. Mostly, they wanted to give me sleeping pills or anti-depressants…. which I refused to take.

Finally upon the recommendation of a friend, I saw a woman GP who listened to everything I was saying, and ran a simple blood test to check my prolactin level. Prolactin is a hormone that is in both men and women, but usually the level rises during pregnancy, telling the body to lactate when the baby is born.

Normal levels are usually under 25. In a pregnant woman or woman that is lactating, they are usually between 50-100. My level was almost 2900. The doctor called and said the level was a pretty good indicator I had a brain tumor, more than likely on my pituitary gland.

BRAIN TUMOR….. brain tumor….. BrAiN tUmOr….. the words reverberated and echoed inside my skull as if there were nothing else in there. Except, oh yeah…. the brain tumor.

An MRI confirmed that yep, I had a LARGE ass pituitary tumor. a macro-prolactinoma. Usually a tumor of my size starts to affect the vision and other pituitary functions. Lucky for me, everything was still functioning properly. Immediately I was referred to a neuro surgeon, but not before I could read everything I could get my hands on to educate myself… or prepare myself for what was next.

So for the first year, I’d been on massive doses of bromocriptine (usually effective with suppressing the prolactin level, thus shrinking the tumor.) Over the course of the first year, it started working, then it stopped working. Then on the 2nd year, I started dostinex. It too was working, then it stopped working. So the dosage was increased. Again the level dropped. 2 Neuro surgeons and an endocrinologist later, the level has gone back up.

After my last doctor’s appointment (I now have 2 specialists which are 2 states away), he says this is “not normal” and it may be bleeding out. Having tried to avoid surgery the last two years, I am now forced with possibly having it anyway. And no, I am not thrilled about it. The fact that I will look and feel like I had a head on with a train, be in intensive care for 3-5 days, and be completely out of control terrifies the hell out of me.

I feel like the last 2 years of having my head in the toilet trying to keep medication down, losing most of my hair (I am now starting to resemble one of those older guys trying to hang on to a few wisps of hair), draining my bank account with insurance premiums, co-pays, Rx, and numerous travel/ lodging expenses to see the specialists, have been all in vain. Not to mention trying to keep my marriage together, because I haven’t been able to “will it away” with my mind. And because of the numerous “sick days”, my paychecks have been pretty small. Also not good if you are married to my husband.

Yet the specialist last week, said to keep taking my meds and come back in November. I really wonder if I can last that long. The headaches are unbelievable. He didn’t even want to run an MRI. Isn’t that weird? The last one was last November. Wouldn’t they want to see where I’m at? They did draw blood, but I haven’t heard the results yet.

Yet I heard something interesting last week. Even when you don’t feel like it…. SMILE. Keep smiling. While smiling, you trigger something in your brain and it actually makes you feel better.

SMILE.