beatingcowdens

6 Months…

Published on June 21, 2012 by beatingcowdensLeave a comment

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.

“Sapphire”

Published on June 21, 2012June 21, 2012 by beatingcowdens1 Comment

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.

De :fr:Image:SaphirSynthetique.jpg Categoría:M... — De :fr:Image:SaphirSynthetique.jpg Categoría:Minería (imagen) (Photo credit: Wikipedia)

Once again – I am reminded of how precious life is. And once again, I am humbled and proud to be her mother.

–>

Father’s Day

Published on June 17, 2012June 17, 2012 by beatingcowdens2 Comments

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…

“I know…”

Published on June 15, 2012June 16, 2012 by beatingcowdens1 Comment

Kids know. They have instincts adults have lost. Never underestimate the power of a kid. (This was written a few weeks ago, and I am just now getting to adding it here.)

I know that my daughter is a smart girl. I know that she is in so many ways wise beyond her years, but I never cease to be amazed by her instincts, and her ability to read people – especially her family.

She knows that we share a genetic link and that we both have the same – Cowden’s Syndrome. She knows that we tend to grow things. She knows about her own AVMs, and that she has some thyroid “bumps” we are watching.

I am guarded but honest when I speak to her. It is important when you have a child who is sick so often that they trust you. I learned there is no way to lie to her and keep her trust. So, I answer the questions she asks, using as few words as possible, and I always stay honest.

That is why I was floored a few nights ago. She has been having a hard time with her knee again. In the middle of a not so common, depressive episode she complained for a while about her knee, and the permanence of the pain and swelling. She was frustrated, and she is allowed – so I held her as she cried.

What floored me was what happened next. She grabbed onto my shoulders and looked me in the eye. She said “I know…” I said, “What do you know?” She said, “Cowden’s makes it more likely for us to get cancer. You had cancer once and you were ok. Are you going to have it again? Is that why you had your other surgery (the hysterectomy?)”

I swallowed hard, intent to stay focused. “I don’t know,” I told her. “I don’t think so. We just took this stuff out to be safe.”

She looked at me with those tired eyes. She looked at me for a long time. She held me tightly and said, “I don’t like leaving you ever – even for school.”

Holding her as tightly as I could, I said, “I know…”

“Every little thing gonna be all right…”

Published on June 14, 2012 by beatingcowdensLeave a comment

http://www.youtube.com/watch?v=mACqcZZwG0k

Bob Marley – “Three Little Birds”

“Don’t worry about a thing,
‘Cause every little thing gonna be all right.
singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, (“This is my message to you-ou-ou:”)

Singin’: “Don’t worry ’bout a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry (don’t worry) ’bout a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, “This is my message to you-ou-ou:”

Singin’: “Don’t worry about a thing, worry about a thing, oh!
Every little thing gonna be all right. Don’t worry!”
Singin’: “Don’t worry about a thing” – I won’t worry!
“‘Cause every little thing gonna be all right.”

Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right” – I won’t worry!
Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry about a thing, oh no!
‘Cause every little thing gonna be all right!

I can imagine sitting on the deck by the pool. Oh, wait – the surgeon hasn’t cleared me to swim. And, I still need a bathing suit.

The cute tankini I bought was vetoed by my husband who thinks it makes my boobs look fake. LMAO at the irony of that!

Well, at least I can imagine sitting on the deck with a strong cocktail in hand… working to convince myself that every little thing is gonna be all right.

My daughter’s much awaited appointment was today. The sonogram was at 1, and the doctor at 3:30.

The sonogram was thorough – took almost 45 minutes. The doctor reviewed the images, but could not give us a clear decision until he uploads the CD I brought with last September’s sonogram images for comparison.

For right now he said things looked good. There are MANY nodules, but most are smaller than one cm. He is content to keep watching every 6 months if he doesn’t find anything on comparison that warrants a closer look. Somewhere this has to be good news, although I am always afraid to get too relaxed, so I am waiting for the phone call.

What boggled me was how laid back he was about the puberty. He told me even though she won’t turn 9 until August and she has been developing a good 6 months, that it is not too early. He said to leave it alone. Apparently she and I are the only 2 concerned. I have been super upbeat about all the changes to her, but I can’t help it. In my belly it just feels WRONG.

Maybe I am just too used to worrying. And there are reasons for that. Its seems to be all we do. Sometimes good news gets to be harder to process because it comes so rarely. Sometimes it is almost odd to hear that things are “normal.”

So, we will wait for the phone call to confirm. Then we will table the thyroid issue till December.

Next up for my girl, MRI/MRA of her knee. June 28th.

For me, well, I need to find a dermatologist, someone to screen my kidneys, someone to follow the tumor on my spleen… oh, and I need a bathing suit. According to my dear husband, one that doesn’t make my (fake) boobs look fake.

And, a LARGE cocktail with a cute little umbrella, and some Bob Marley in the background…

Every little thing IS gonna be all right!

Ready or not!

Published on June 13, 2012 by beatingcowdens2 Comments

Time is a strange phenomenon.

It just doesn’t stop. There are days we would like it to go slower, and days we would like it to go MUCH faster.

There are days we would like to relive, and those we would gladly forget. But really, we have no control at all.

60 seconds in a minute

60 minutes in an hour

24 hours in a day

7 days in a week

52 weeks in a year

I find there are occasions when I would like time to hurry up. When I am waiting for my daughter to get out of surgery is the best example. Time can’t go fast enough. When I am waiting on pathology results, for any of us – it always seems like forever.

When we were first diagnosed with Cowden’s Syndrome in the fall, the first thing they did was send my daughter for a thyroid sonogram. Of course it revealed 4 large nodules which we subsequently had biopsied at a hospital no better than a butcher shop.

As we sought out another opinion, and moved the slides to a much more reputable facility, an appointment in January found us with a pediatric endocrinologist who actually had some experience with Cowden’s. He told us he had reviewed the slides and noted precancerous cells. He essentially told us our daughter would have thyroid cancer at some point, he just could not say when. So, he told us to return in 6 months, and we would check again.

I remember at the time thinking 6 months was an eternity. I wanted it to be faster. I wanted reassurance that she was well. He was insistent that 6 months was appropriate.

So we made the appointment for June 14th. Now June 14th is tomorrow. And I think I may need a little more time before I am ready. Things have changed. Now we have an 8 year old with a developing body, and labs that don’t match. Now the reality that there could be a malignancy on her thyroid, actually helping cause some of these problems is making me want to vomit.

If we could slow things down… just a little?

15 hours from now we will be sitting for the thyroid sonogram, and 17 hours from now we will be discussing the results with the doctor.

I am trying to prepare myself for whatever he has to say. I have to hope for answers, for her sake.

Even if they aren’t the ones I want. Too many open questions. Too much time had passed.

Ready or not, here we come!

Bathing suits and other insecurities…

Published on June 11, 2012June 13, 2012 by beatingcowdens8 Comments

Some days I forget. I really do. Some days the thought that I had my boobs cut off and replaced with these round silicone implants doesn’t even cross my mind. Then, there are other days.

This morning I took a shower. Not a rare occurence, but maybe it was rare that I wasn’t late. That I had time to really look at things. So I looked in the mirror. First, at the small hysterectomy scars that are healing quite nicely. (While I still have ISSUES with whatever is provoking the NEVER – ENDING bleeding inside, the outside scars look great.)

Then, I looked up. Staring me right in the face were these perfectly round circles where my boobs used to be.

There is a scar across each one. No nipple on ether. There is also the most bizarre indentation under my arm on both sides. I looked at it for a while. Then I realized it was my ribs. It just looks weird. And wrong. There should be some kind of tissue there hiding my ribs. I am sure of it.

I took a few deep breaths. I reminded myself that I would have the luxury of drying my large head of curly hair – because the cancer that was hiding in the left boob was gone. For good. No treatments. No worry. Just have to get used to the new landscape.

I put on my bra. One of the new ones with the A cup. I tightened the straps. I wiggled this way and that. Still there were these huge gaps. Even the bra people don’t figure on what you are supposed to do to cover ribs where they shouldn’t be.

I did manage to get it together, and get out the door to work. I am sure no one noticed any of my insecurities as I went about my day, but they were there. Nagging me.

Since I am somewhat of a masochist, I decided today would be the day to try on the bathing suits. There were 6 in all in my drawer. Four of them literally fell off of me. One was full of “extra fabric” as my husband put it, and the other one – well that one wasn’t so bad at all. A relief I guess that when I get the OK from the hysterectomy surgeon, at least I have a suit to put on.

I went tonight to the mastectomy section of an online retailer to buy myself a real suit. I was so confused. Unsure of my own size, and which will cover enough, I settled on a (way too expensive for my taste) tankini. It should arrive in a few days. Maybe it will even fit.

Summer is coming, fast and furious. Whether I like it or not, the new body is making its debut.

Look out world – with a slightly flatter belly, and some perky new boobs – here comes the new me.

At least I don’t have to worry about my nipples sticking out at all the wrong times!

I am getting more ready – one day at a time!

It’s HOT in here!

Published on June 10, 2012 by beatingcowdensLeave a comment

Holy hot flash!

Wow… I though I was going to get away with this. Then, almost 4 weeks later, I am sitting here and there is this heat, creeping up from my toes. I swear my skin was crawling with fire. Up the legs and the back. As I went grabbing for something to get the hair off my neck and wiped the beads of sweat frantically forming on my brow.

Inhaling a bottle of water, I can’t help but hope that my body doesn’t make this a habit.

Really Cowden’s – I do HATE you.

Tonight I am even at a loss for words.

Collateral Damage

Published on June 8, 2012June 8, 2012 by beatingcowdens5 Comments

Collateral damage occurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

I don’t think it’s far-fetched to equate Cowden’s Syndrome to a war.

Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is also the battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.

This is a war my daughter and I are fighting together. Each on our own road, but we are battling the same enemy.

Like in every war it is inevitable that there is collateral damage.

Today was the 3rd grade play at my daughter’s school. It was also “Family Fun Day,” where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.

It was about 82 and sunny here today. The weather hasn’t been this perfect in weeks.

And I, I was at work. My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.

How is this all connected? Very easy.

If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.

Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.

I got permission to go in an hour late. I got in to see the dress rehearsal of the show. I stole 10 minutes on my lunch to drive by the park. And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.

She is such a good girl. “Don’t worry Mommy, I understand. I am so glad you are feeling better, and I know you need to get back to work. Maybe next year we will all have less surgeries, and then you can come?”

Collateral damage – my girl having to grow up so damned fast.

I really do hate this disease.

Back to work, back to reality!

Published on June 6, 2012 by beatingcowdens1 Comment

Elementary school kids can be really cute. Sometimes. I have been out more than I have been in these last few months, but since I have been at my school a long time I have a relationship with many of the kids and their families. So, when I walked back in on Monday I was accosted by small people, all of them waist high. Hugging my belly and telling me how much they missed me.

Um, thanks… and OUCH!

I smiled as I tried to slip away from them without offending anyone. They are so innocent. Not a single one thinks to ask why I was gone, they are just happy to see me.

I walk to my classroom, carrying my extra light bag that weighs 6 pounds. I know this because I was told to carry nothing over 10 pounds, so my overprotective – God I love him – husband brought down the scale we use to weigh our luggage, and checked on my bag.

He knows I like to drink a LOT of water during the day. He brought a case to my room, so I wouldn’t have to carry it. He is a pretty good guy.

I sit and look around. It has only been a few weeks again, but it looks strange. Different. I get the sense I am not too sure I belong.

Then I look at my schedule. Classes are coming. Real classes, expecting me to have lessons for them.

You mean I have to teach too? Wasn’t getting here enough?

I made it through – thankfully my days were shortened so I could deal with other issues.

I was OK with coming home from the hospital right after surgery, but did this doctor really know what she was doing sending me back to work in less than 3 weeks? Probably.

My surgery site barely hurts, and aside from some light bleeding, things are getting better. I have to keep behaving, and that is hard. Very unlike me.

It was probably good to get up and out of the house. To be around people. To be reminded that life isn’t just about me and life goes on while you are home recovering from surgery.

I am just so incredibly TIRED!!!!!!!!!!! The deep, bone crushing kind. I need my energy back.

Tomorrow there are no kids in school. Staff development for the teachers. I am starting to feel like I have a purpose again. Less wallowing, more working.

My clothes are all picked out. Let’s see what they make of my favorite breast cancer ‘survivor” T shirt. I may be exhausted, but I will be sure my sense of humor follows me to work and wherever else I go.

If we can’t laugh at ourselves, and our own lives, we are in a LOT of trouble.