June 21, 2012 – beatingcowdens

June 18, 2012

As I was receiving the news of my grandfather’s passing, I mean within moments, my cell phone rang.

It was the endocrinologist we had seen the Thursday prior about the thyroid. It was hard to wrap my head around the conversation at first, but I was struck by the reality that this is it. This is how life will always be. Life won’t stop for the doctor’s appointments and test results, and the appointments won’t stop for life. So somehow, we need to find a way for them to get along, and exist – simultaneously.

The thyroid sonogram had been done on the 14th. When we left him that day he was comfortable waiting a year for the ultrasound, and just seeing her in 6 months. He told me he would call me after he compared her November 2011 sonogram CD to the new one.

So I stopped in the hallway at my school. Tears were still streaming down my face as I composed myself enough to talk to the doctor.

He reviewed the older images and compared them. There are a lot more nodules, he didn’t even give me a number, and most of them are very small. However, there is one a bit bigger than all the others. He would like to keep an eye on that one.

Instead of a sonogram in a year, we got bumped back to 6 months. Doctors seem to like to treat us, patients with Cowden’s Syndrome, in 6 month increments. Now if I can just figure out a way to synchronize them so we are not ALWAYS scanning something…

So, the last time we were there they told us to prepare. She will have thyroid cancer I was told. Until then, they will just watch. December 27th it is then.

Even as I continue to wonder if all these thyroid nodules couldn’t be provoking this puberty, setting off a way too early growth cycle, I knew I wasn’t going to get an answer. At least not today.

So, I closed the phone and dried my eyes. One day the thyroid will turn, but it’s not today. Not now. At least we can have the week to bury Grandpa in peace.

Grandpa, …, passed away on Monday, June 18, 2012. . Born in …Grandpa lived in … for many years before moving to …7 years ago. He worked as a lineman and foreman for PSE&G for many years prior to his retirement. He was a proud veteran of the U.S. Army during WWII and the Korean War and lifetime member of the American Legion. Beloved husband of 60 years to Grandma. Devoted father to…and his wife … and … and his wife …. Cherished grandfather to 6 grandchildren and 3 great-grandchildren. He was also survived by many loving nieces,nephews and friends.

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The above is a snapshot of my Grandfather’s obituary. I removed the names and locations, because really – they don’t matter. He was a kind and gentle man, loved by everyone. Classy, and wise – funny, and easy to talk to.

My daughter proved to me again this week, that although we have Cowden’s Syndrome, it does not have us. It does not define who we are.

She is 8, turning 9 in a few short months. This was her first funeral. She went to the funeral parlor with me, alone. And then to the funeral with our family. She acted as one of the honorary pallbearers. She cried, she smiled, she focused, she hugged all the right people at all the right times. She got through the service, and hours into lunch before we handed over her Itouch – she never even asked.

My Grandfather called her “Sapphire.” He knew she was special. He made sure she had a sapphire necklace. Her eyes lit up whenever they were together. He will be sorely missed by all of us.