This ones harder to write, and encompasses a lot of feelings and emotions.
It's about my husband Lee.
We met about 7 years ago. Our first date we arranged to meet at Hammers coffee in the mall.
We sat and talked for hours. Before we knew it they were closing up and telling us it was time to go. It felt so right. I felt like I had known him forever. I was in love, but because of my past history I wouldn't accept it.
We started dating and grew closer and closer.
After about five years we moved in together.
We had so much fun. Hiking, camping, vacations, day trips, hockey games, watching movies, and just being together.
Then Thanksgiving happened. Lee got a really bad cold. He got up at 4 am, got dizzy, fell and hit his head pretty hard. I kept an eye on him and in the morning took him to urgent care. He had a sinus infection pretty bad, and they did a CT scan just to make sure everything was ok.
They told us there was something there but they weren't quite sure what but it was probably just an artifact and to follow up with his doctor.
We did a week later. He ordered an MRI, and discovered this thing, probably an artifact was a brain aneurysm.
Thus started a whole string of events , doctors, surgeries and hospital stays.
The first surgery was a full craniotomy, where they opened up his skull and proceeded from there. The aneurysm was sitting on the optic nerve. He was slowly losing vision in that eye and we hadn't noticed.
Once in they discovered the aneurysm was to close to the sinus cavity to safely clip it, however, they were able to move it which left him a candidate for a 2nd type of procedure called a coiling, where they insert a wire, break it off and the body forms a clot around it sealing it off so it will never rupture. The 2nd procedure was a success.
The first surgery though, it left him in a wheelchair, unable to walk more than a couple steps without falling.
It left him dependent on me and the multitude of therapists and nurses that were in and out of our home every day.
He learned to walk with a cane and now manages that pretty well, though on occasion needs his wheelchair.
A few weeks after the second procedure he was diagnosed with Parkinsons disease. We suspected this so it really wasn't much of a shock. He got on meds, the tremors stabilized, and life goes on right?
We decided to get married a couple months later. July we got married in a simple, sweet ceremony with all our family around. It was wonderful and life felt perfect.
Just a few short months after our perfect day we get a call from Lees internist. His white blood count was up and could he come in for a repeat tomorrow as well as some other tests. I remember that day. His WBC was 12,000. Normal is 4-10000. Only a little up, but they wanted to make sure there was no infection. He had a urinalysis done as well as a chest xray and blood cultures.
A week later the tests were back, and all negative. No sign of infection anywhere, and a WBC that was now in the 20s.
Off to a hemotologist/oncologist for a consult.
One bone marrow biopsy and a few weeks later we got the results. the big C. Cancer. that evil and most unholy word ever. He is Philadelphia and BRCA1 positive, both considered positive results for chronic myelogenous leukemia. All I heard was leukemia.
we went back to the waiting room for some more tests they wanted to do. While waiting I stepped out into the hallway and called work to take the night off. I needed a night because I was ready to have a break down in a bad way.
That is how we got to where we are today.
I know thats long for background, but it's important.
It hit me bad. Yes Lee is a lot older than me, that's never been an issue. I knew the odds are that I would outlive him, simply because he is 29 yrs older than me. Then in one year he was given two terminal diagnoses.
The world slammed to a screaming stop for me, but I could still see it going on around me.
I wanted to get mad. I wanted to scream and yell and tell everyone to stop because it was over.
I couldn't though, because as life has taught us Life MUST go on.
I'm a nurse. I take care of kids that shouldn't have been alive. Kids that were given a few months, maybe a couple years to survive. I take care of kids that gave their doctors a big FU and lived. Not just survived, but LIVED.
Going to work while all this was going on with Lee gave me a little hope.
A little sunshine in a dark world.
Kids who don't know the meaning of "you aren't supposed to be able to do that" showing me that no matter what happens it's ok somehow.
The few hours a day I spend with these families have taught me that doctors don't always know it all, and to never give up looking, hoping, and praying.
The families that inspire me for the simple reason that they never gave up.
So many times in life it's so easy to sit back and look at the big bad broad picture. It's so easy to get wrapped up in the why us mood. Its so easy to be selfish and forget that there are others out there with problems....but then when you sit and play with a toddler it's all in perspective... the big picture becomes small and you learn quickly that if you have the wrong teddy bear at bedtime the world will end.
And you eventually realize that yes, Life will go on.
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