It’s going up to about 97 degrees today. And while I still can’t swim, thanks to some LINGERING hysterectomy healing… I had an “AHA!” moment as I got dressed today.
There are these adorable spaghetti strapped camisole tops. You know them, the ones that have the shelf bra that couldn’t hold a damn thing, so you keep wearing a bra under it, and then you wear another top over it to hide the straps, ending up hotter than you were to begin with? I see girls and women with them all the time. I have about 6 in my closet. All colors.
Today as I got dressed the thought occurred to me to try it without a bra. Just to see.
Well I’ll be damned. There is a benefit to fake size A boobs. I can hop, skip and jump. They don’t move. No bra required. No nipples makes for even less worry.
Summer Vacation began today. Yesterday was the last day of school for Meghan and I until early September.
I love this time of year, where I always say I get to have one full-time job (stay at home mom) instead of two. Well, maybe it’s two full-time jobs – medical manager of all things Cowden’s related, AND stay at home mom… But either way it is a break from the responsibilities of work, with all the benefits of still receiving a paycheck.
Meghan’s report card was beautiful. She makes us so proud. We talked all about the end of third grade and the beginning of fourth. We ordered a new backpack (Have to order early if you want that special GREEN!)
Then she asked what we would do today, to start off our first real vacation day. I don’t think she was surprised when I answered with, “A doctor’s appointment and an MRI.”
So this morning I got up at regular time. I watered the vegetables in our garden which is growing so beautifully this year. I made sure Meghan was dressed, and the dogs were crated. And we walked out the door at exactly the same time we caught the school bus every morning for 10 months.
We made it to NYC in time for my surgical follow-up. I have officially had all restrictions lifted, although the chronic bleeding continues! I was told not to worry, and it should be gone in another 4 weeks. Delightful.
Then, we walked a few blocks to the knee MRI. She was in the tube at 10:02, with only 0.25mg of xanax to take the edge off, and lasted in there until 12:05. unbelievable. They told me they had 5,000 images. I left with a CD in hand, and a promise there would be a report by Monday.
We got home in time for a quick lunch. I managed to get the CD of the MRI, combined with a cover letter, in an envelope to Dr. K, head of orthopedics at Children’s in Boston, and sent it off in the mail. Some time next week he will call to tell us if the date for surgery will be sooner… or later.
We made it to a friend’s pool for a few fun hours, to try to salvage the day. She went to bed exhausted, and soon I will too. I hope this isn’t an indicator of what summer holds, because I am striving for a serious amount of doctor free days. More time with the kid, the pool, and the tomato plants.
The cutie in this picture is my cousin Meghan. She was born in 1985 when I was just in the 6th grade. She was the first child I ever babysat for. She was my buddy.
She was diagnosed with Leukemia around her second birthday.
Remissions and relapses, bone marrow transplants and chemotherapy followed the next 4 years, but a cure was not to be.
She passed away in 1991 on my 18th birthday. She shaped my life in every way imaginable. I am a better person because I knew her. I developed perspective at an early age because I knew the pain of having loved, and lost someone so young.
My daughter Meghan was born in 2003. I asked my aunt and uncle for permission to use the name. They were pleased, but not surprised. Meghan was a huge part of my life, and I wanted my daughter to know her name was carefully chosen, and she was named for one of the strongest little people I ever knew.
My daughter knows all about “Angel Meghan,” and how she watches over us. She knows all about childhood cancer and its gold ribbons. She happily worked to raise money for a school project this year, for a “great” cause. She knows cancer took young Meghan’s life.
She also knows her Mom and her Grandma had cancer, and they are doing just fine. She knows the battles can be won, but they seem to be all around us.
What she doesn’t know, is where she fits in. She lives a life where at a young age, cancer and its risks have become a real part of her life.
She knows she fights every day, to get through her own life with a rare genetic disorder.
What I find interesting is she is seeking a symbol. She wants something to wear to show the world what she is contending with. She was able to express it to me, and while I was amazed, it made sense.
My husband bought me a Pandora necklace with pink ribbons after the cancer diagnosis. I have a bracelet I wear. They give me strength, as silly as it may sound. A sense of focus. A reason to stay on top of things.
She needs something. And it isn’t easy to find. It’s not a blue ribbon, but a denim one representing genetic disorders. I think I will have something made. Anything to help her find her identity.
She is special. She is named for someone special. She is unique. She is smart. She is funny. She is friendly, and wise. She is a lot like my cousin who came years before her. She is tenacious and strong-willed. She is finding her identity. She is growing up. She knows Cowden’s Syndrome will never define her, but she wants to feel empowered. I can’t blame her.
Cowden’s Syndrome is the “Elephant in the room.” It is always there. It is never going away. Yet, most people – even immediate family- don’t want to discuss it because it makes them worried or uncomfortable. They would prefer to justify to themselves that your constant worry, and never-ending list of appointments are nothing more than paranoia and nonsense.
The “elephant” made its way into our house last fall. It’s not leaving. So we are working on respecting it, and treating it as the oversized house guest it is. Feed it too much and it will become more overpowering in its sheer volume. Ignore it and forget about it, and well… a hungry elephant can do some damage.
What brought me to all this metaphorical thinking today? It is likely to sound quite silly, but it was an earache.
Now, granted it was not an ordinary earache, the whole side of my head hurt, and still does. But the point is prior to my diagnosis, prior to my knowledge of Cowden’s Syndrome, it would have been “just an earache.”
Instead, I woke this morning in terrible pain. I was dizzy and uncomfortable. I immediately started remembering all the times I was dizzy or out of sorts this week. I have no fever, no cold, no signs of infection, no real reason for this pain. Yet, it was bad enough for me to drive to the Urgent Care center at 9 on a Saturday morning.
I waited for the doctor nervously. I recounted my symptoms to him. Here they know nothing of Cowden’s or chronic issues – they simply treat what they see. So, he looked in my ear and said, “It’s not red, there is no swelling, and no sign of infection.”
My heart sank.
That should have been very good news. He was sending me with a script for ear drops “just in case,” but not to worry – “there is no problem.”
No problem except, my ear feels like it is going to explode, the whole side of my head is sore, and all I can think about is “What if there is a tumor in there?”
This is not a rational response to an earache. I know it isn’t. I am also pretty sure there is no tumor anywhere near my ear. But, this is how Cowden’s Syndrome can change your perception of reality, heighten your anxiety, and keep your worries hopping.
If the doctor had told me I had an ear infection I would have been thrilled. Instead I have unexplained ear pain, dizziness, and worry.
I am sure it will get better in a few days. That’s what I keep telling myself. But what if it doesn’t?
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.
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.
Once again – I am reminded of how precious life is. And once again, I am humbled and proud to be her mother.
Some days it’s not about Cowden’s Syndrome, or tumors, or doctor’s appointments. Some days life just is about life.
Father’s Day. A day to celebrate the fathers in our lives.
My husband is the best dad in the world. I mean it. And he is a pretty amazing husband too. There aren’t enough words to describe how lucky I am.
My Dad, tries his best. He and my mom divorced when I was 5. He has struggled with his own life through the years, but we have stayed in contact. He does the best he can.
My stepdad, married my mom 24 years ago. He inherited 2 bratty teenagers and has loved us as his own from the beginning. He has put us through college, paid for 2 weddings, fixed houses, and been there through it all.
My Pop, my mom’s Dad is 92. A WWII veteran, and a retired firefighter, he is amazing. He and Grandma still live on the second floor of their own house. We lived in their house for 15 years, and they became a second set of parents for us. Now they are Great Grandparents. They pick up my daughter on half days, and love spending time with her.
Today my heart is heavy though. My stepdad’s father is suffering. When his son married my mom 24 years ago, they had no grandchildren. They didn’t expect to start out inheriting two teenagers, but they did. And they handled it gracefully. Over time Grandpa came to love us in a very special way. He is especially attached to my daughter, who he calls “Sapphire.” He even made sure she had a special sapphire necklace to always remember her name. He has been brave his whole life and has fought cancer in more places than I can count. He has been in the hospital for a month now, and this is it. He is ready. He has had last rites. He has asked his boys to take care of their mom. He has told God he is ready to go. So we wait.
Today we remember the fathers, grandfathers, and great grandfathers that have touched our lives. We hug some, and we miss some. We acknowledge their impact on us.
And today in my house, we whisper constantly a prayer to God. Today it’s not about test results or surgeries. Today we ask that He be merciful. Grandpa is ready to rest…