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Whose afraid on an MRI? Not me – practice makes perfect!
So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing. Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the...
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Fighting My Way Out of the Cage
A few days ago I wrote about my dog Lucky – biting through the cage. Well she got her wish, and she is a free dog now. Free to roam around my house, lay where she wants, and drink when she wants....
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“Keep Swimming!”
There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you. I saw this today and it made me think of some of the people I have met over the...
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Don’t talk about my boobs unless you’ve walked in my shoes
“Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day,” said Sarah T. Hawley, an associate professor of...
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Moving Forward
May 16th for years has had a special place in my heart. In 1985 my cousin Meghan was born. I was in the 6th grade and giddy to get to know her. I never could have known at the time that her life...
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I believe…
I believe that there are lessons to be learned from every event in life- especially the ones that don’t turn out like we plan. I believe in looking for the positives; when plans change without warning,...
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Race for the Cure!
I woke this morning to the sound of my dogs running back and forth through the house. They weren’t barking – just running. The sound also woke Felix who is quicker in the mornings than I am. “Weren’t...
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I wish cancer got cancer and died!
Today was rotten. And it is Saturday. I hate it when Saturday is rotten. And I am tired. And worried. And my heart is heavy. I guess that makes me in the same boat as most people. And then there was...
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Scars…
There are days I forget. I forget that it’s not just Meghan, but also me with this rare disease. As a matter of fact, it’s actually uncommon for me to remember. Maybe it’s survival. Maybe it’s...
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Vascular Road Maps and other Cowden’s adventures…
I sometimes hate the saying that things work out the way they are supposed to. Sometimes I just don’t buy it. But, then there are other times. I have suffered with varicose veins since I was in my...
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Keeping focus
It’s 2015 and the first surgery of the year has been scheduled. February 18th. This year it’s my turn to have surgery over the February break. It seems each year one of us takes a turn. So while my...
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Three Year Old Memories
It was about 4 in the morning on March 5, 2012. I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach. I was dizzy, lightheaded and weak....
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She didn’t get THAT from me!
And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again. I am just along for the ride. She looks like me. She and I share a broken PTEN gene, and...
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Invisible Illness – Stuck in the Middle with You
I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart. I...
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Anticipation…
Funny how things creep into the mind. Then there was this Heinz commercial from the 70s. Anticipation – is making me wait… Tomorrow we do it again. Surgery 13. Vascular malformation, left palm....
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Losing Count…
In school I count children. Religiously. Especially in September. I count them in, and out. I count pencils, to pacify my OCD. 12 to a table. I count days until appointments, special occasions, and...
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Hyper-vigilance
Hyper-vigilance. Although Wikipedia is not my favorite source for all things – it defines this quite well. Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated...
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The Story of the Girl and Her Mom
So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.” Soon after they diagnosed her, they diagnosed her mom too. And the mom and the girl read...
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(Breaking the) Code of Silence
The song by Billy Joel… “Code Of Silence” Everybody’s got a million questions Everybody wants to know the score What you went through It’s something you Should be over now Everybody wants to hear the...
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Dear Stress, Let’s Break Up…
Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace. I know I’m bad at ending relationships. I get attached even to things...
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