Cowden’s Syndrome – Page 35

“I hope you never lose your sense of wonder…”

Published on January 21, 2013 by beatingcowdens5 Comments

Meghan left tonight for the Father Daughter Dance with her Dad. I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life. She needs that time – to be happy and carefree. She needs time to just be a kid.

I looked back on some old photos from dances in years past. I know it sounds cliche, but I can not believe where the time has gone. It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.

I think she took it better than me.

I cried a lot this weekend.

I think I am angry too if I am honest. I think I am not just sad, but angry.

And that’s ok. I have to let myself feel even the ugly emotions when they are in there.

I am angry about Cowden’s Syndrome. I am angry about the cloud it carries, even on the sunny days. We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played. Forever.

I have said before, and I will say again – if it was just me…

But it’s not. It’s her too. That is reality, and it really does torture me sometimes.

All parents feel pangs of sadness as their children grow. And, Meghan being my one and only, I am sure the pangs sting extra hard. But, there is more than that. We deal with something most parents don’t.

As her age increases the looming cancer threats that Cowden’s carries with it increase as well. At her age, the biggest threat is thyroid cancer, and we are battling the beast head on. We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back. All thanks to Cowden’s Syndrome.

But, as she grows and matures, so does her body, and with it her wisdom.

She looks quizzically at my silicone breasts and her own developing ones. She wonders. Sometimes to herself. Sometimes aloud. When will it be my turn?

She asks if she will be able to have children, or if she will need to have her uterus out first. She asks that if she does have children… do they have to have a PTEN mutation? Do they have to have Cowden’s Syndrome?

Too many questions to flood the mind of my 4 foot 11 9 year old. Too many questions for the string bean with the developing body. Too many worries for my baby girl.

I am angry. But thankfully she is not. She takes each day as it comes. She accepts the eventuality that one day the biopsy will not be negative.

I sheltered her for a long time, but they made me lay it on the line this year. So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month. I told her there was no guarantee she would get cancer. So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer. The number is small.

So we talked about the benefit we have that others don’t. We talked about how constant screening means we will beat whatever beast tried to get at us. We will be vigilant.

We will win.

I get angry sometimes. She just finds other ways to make me smile. She keeps my heart soft. She is my rock. Wise beyond her years, and still a kid at heart.

I hope you and Daddy dance your hearts out tonight!

“What are you celebrating?”

Published on January 20, 2013January 20, 2013 by beatingcowdens3 Comments

I am awake earlier than the rest of my family. My big dog took a container of Meghan’s gluten, dairy, soy free chocolate chip cookies off the counter last night while we were out. I think she will be fine. She just had her second dose of activated charcoal, and she seems to be resting comfortably. But. EVERYONE knows who the Mom is when they are sick – so she and I BOTH had a long night. (and I am sending her Daddy out to clean the yard! :-))

Allie - The Cookie Monster — Allie – The Cookie Monster

Last night we headed to Manhattan where we celebrated Felix’s sister’s 50th birthday. It was a crowded room, and although the food was quite good, I had a tough time being so cramped in. My little girl, as usual amazed me with her calm, patience, and poise. I asked her before we left of she wanted me to ask the restaurant to cook for her. She said she wanted me to pack her dinner. She doesn’t trust very many places to “get it right,” and she did not want a belly ache.

So. she put on her fancy dress. The one she is so EXCITED to wear to the Father/Daughter dance hosted by her school Monday night. I put her hair up and stepped back. This child has always been mature beyond her years, but when did her body start to catch up?

We sat, for a few hours. There was minimal time to walk around, but when she did get to talk she vibrantly retold the story of how she lost her last baby tooth, and the Tooth Fairy left her $20 and a Tigger pin! Way to clean up on the last tooth, None of the others were worth that much!

Magic. She brings it back into our lives. She rounds out her father and I. She is a princess. Yes, she has just about everything she has ever asked us for, but she has a whole lot more. She has compassion, patience, maturity, and wisdom. She has kindness and generosity. She takes pleasure out of making people happy.

My mother always said, “Children should be spoiled, just not spoiled rotten.” Doing our best Mom. It seems to be working out ok.

Before I started writing this, I was searching the Disney website. I was playing around with prices for a summer trip. We have taken Meghan to Disney in August (usually for her birthday) every year since she turned 5. My house has photos in every room that remind us of our adventures. We have had the happiest of times at Disney. We enjoy each other. And, I have to say, the year my parents joined us, was one of the best vacations.

We started going to Disney because of their accommodations for allergies. It is almost impossible to maintain a gluten, dairy, and soy free diet for a week without staff trained to take every allergy very seriously. And while we struggled a bit last year to find “quick service” food for her, on the whole we have had only positive things to say about our Disney dining experiences. When you have a child with allergies, you plan your trips a little differently. Everything else falls into place, AFTER you know they will be well fed.

Disney also accommodates her chronic joint pain. Even with the Celebrex she could not endure the miles of walking we do each day. She travels Disney – walking some, but spending the majority of her day in a portable wheelchair. We always get a room on the first floor to avoid extra steps, and in the event those knees give out, every park has everything from Advil to heating pads to help with the pain.

Not to mention the Magic. I believe in the wonders of Disney. I believe in the smiles of hugging Chip and Dale, and Mickey and Minnie, and all their friends. I believe in the smiles on my girl’s face. I believe in the memories we are making – that no one can ever take from us.

So, this morning when I ran the prices of the trip through the computer I choked a little. It, like everything else, has gone up a good deal since last year. And, for a brief second the thought of not going crossed my mind.

I mean, the deck needs major work, we still haven’t finished the upstairs. There are plans for the basement to be redone, and the backyard needs help. What about that awning for the blistering sun in our back yard. Plus, this year forced us into a new car, braces….

Then I saw the question in the corner of their website. It said, quite simply, “What are you celebrating?”

Well, that did it. We are celebrating all right. We are celebrating Meghan’s negative biopsy. We are celebrating the knowledge we have gained from our Cowden’s Syndrome diagnoses, and the ability to “strike first.” We are celebrating that after a long stretch of studying, they offered the Electrical licensing Exam, and Felix passed part one on his first try. We are celebrating the love of friends, the kindness of stangers, and the compassionate heart of my little girl. We are celebrating the power of God and the Holy Spirit to lead us to a place we worship together as a family each Sunday. We are celebrating “more birthdays” as Meghan will turn 10 and Felix 40 during that hot August vacation. And I could go on and on with the thoughts that flooded my head in reply to that simple question.

So today I will finalize our trip. I will be sure to get “trip insurance” in case life tosses us any more curve balls between now and then. We may not finish all the projects around the house this year either. But we have lived here for 12 years now, and its a pretty nice place to be. The projects, the bills – they will get paid for and finished.

The magic may not last forever. We have learned as a family to stop and enjoy the ride. We are celebrating our countless blessings. God is good. Life is good. Family vacations are worth celebrating.

My Little Ambassador

Published on January 17, 2013January 17, 2013 by beatingcowdens15 Comments

Meghan is really into raising awareness of Cowden’s Syndrome and other Rare and Genetic Diseases. She is extremely excited about “World Rare Disease Day” on February 28th.

We are in the process of making MANY denim ribbons that look like this. She plans to ask her principal tomorrow if she can give one to every staff member and student in the school. She wants to do this purely to raise awareness. Her ideas for fundraisers are developing separately.

She has also researched statistics on Rare Diseases, and came up with this sheet to attach to the ribbons.

February 28^th is World Rare Disease Day

My name is Meghan… and I have a Rare Disease called Cowden’s Syndrome. It is a genetic disease that affects only about 1 in 200,000 people. (That is only about 1,500 in the whole USA!) One of my genes called PTEN is broken. It causes tumors and vascular growths in my body. I have lots of surgeries. My Mom has Cowden’s too. We are luckier than a lot of other people with rare diseases.

I learned some information about other rare and genetic diseases;

1. There are about 7,000 types of rare diseases.

2. Some of the rare diseases affect less than 100 people.

3. 50% of all rare diseases affect children, and are responsible for 35% of the deaths in the first year of life.

4. 1 in 10 Americans are living with a rare disease.

5 About 350 million people in the world are affected by rare diseases.

6. If all the people with rare diseases lived in one country, it would have the 3^rd biggest population in the world.

7. 80% of rare diseases are genetic. They can present at any time in a person’s life. My mom was much older than me when she was diagnosed. I was diagnosed first!

8. There are no cures for any rare disease, and only 5% of them have any treatment.

9. Over 50% of all rare diseases have no foundations, support groups, or anyone looking for a cure.

10. Cowden’s Syndrome isn’t fun, but when it comes to rare diseases, we are some of the lucky ones.

We support, and get our information from www.globalgenes.org. Their slogan is “Hope it’s in our Genes.”

That “play on words” is why we wear denim, and denim ribbons today.

In addition, because maybe there was a chance I couldn’t get any more proud, she received a book assignment from school. She had to write a story where the main characters were two dogs named “Casey and Bella.” She decided to write about what meant something to her.

I have no idea who will win, but you know who gets my vote.

Everywhere she goes, she seems to take an opportunity to tell someone about Cowden’s Syndrome. She says people need to know. She uses our necklaces to start all sorts of conversations.

She dreams that one day they will be as common as the “pink ribbon,” or the “puzzle piece.”

I think she is just the girl to make it happen.

Someone in one of my online groups asked if we knew anyone famous with Cowden’s Syndrome.

Does… I know someone trying to make Cowden’s Syndrome famous count?

I love my little girl!

Power Surges

Published on January 15, 2013January 15, 2013 by beatingcowdens2 Comments

525,600 minutes….

The song is stuck in my head.

Dates, numbers, zip codes, birthdates, anniversaries. I think in numbers. I think that’s why teaching math makes so much sense to me.

I used to balance my checkbook right down to the penny. Now I use “estimation.” Sometimes numbers are important, and other times not so much.

Tomorrow is the 16th. January 16th is the birthday of an old friend, but that wasn’t why the 16 was sticking in my head tonight. Tomorrow it will be 8 months since my hysterectomy. Not 6 months, not a year. Eight months is an odd “anniversary” to remember.

I don’t try to understand why I remember certain things. I just do.

Although if I have to guess, tonight the hysterectomy is on my mind because I am feeling my age. (Or perhaps a bit older than my age.)

You see when you have a complete hysterectomy in your late (very late) 30s, Mother Nature has a grand old time, messing with your body and your head. As the months go by your body finds ways to behave that aren’t quite “right.”

Yippee- you no longer suffer through monthly visits to the local drug store to relieve your misery. (She was never my “friend” anyway.) But that may be where the cheering ends.

Tonight I was sure the thermostats – yes both of them – were broken. I fiddled with them to get the chill out of the air when I got home from work. No sooner did I finish the first of the homework with Meghan, and I was removing layers. I checked the temperature again. It couldn’t be only 70 degrees. In my world we were in balmy Orlando in August.

Properly changed into a T shirt, I asked Meghan why she wasn’t sweating in her long sleeve shirt.

“Mom, it’s January. Are you OK?”

Yep. Fine. Guess the thermostats are fine too. It’s mine that is a little broken.

Mine is running hot and dry like the Sahara. Lots of water. No wine tonight.

The hysterectomy was a good idea. A necessary step in the “beating Cowden’s” process. I get it. I am not sorry I did it. But really some days I have to say this estrogen withdrawl thing is not for the faint of heart.

I popped one of the migrane pills. An added joy since the surgery – hormonal migranes. And the cool thing is (in my most sarcastic typing) that there seems to be NO rhyme or reason to their timing.

4 migranes my entire life before May. At least 8 since May.

With all the changes my body has been through this year, its a wonder we are still on speaking terms. I guess when I really think about it – it’s probably Ok that I am running at different speed these days. Bursts of energy, coupled with bone crushing fatigue…

525,600 minutes… Cowden’s Syndrome has kept us busy. I can only imagine what 2013 has in store.

Now if you’ll excuse me…. I have to go stick my head in the freezer…

“The Six Month Leash”

Published on January 13, 2013 by beatingcowdens6 Comments

The new normal… that is normal AFTER the Cowden’s Syndrome diagnosis, revolves around living life 6 months at a time.

On Wednesday I got word that I can keep my spleen for at least 6 more months.

On Friday, we got the anxiously awaited news that Meghan‘s thyroid biopsy was benign. We return for another scan in 6 months.

There is 6 months in between visits to the vascular surgeon. 6 months in between the endocrine surgeon, the dermatologist, the rheumatologist, and the general surgeon too. There are more, so many more, but you get the idea.

See you in 6 months. So we can do it all again.

I am trying to slow down. Instead of waiting for the next appointment, I am trying to enjoy today. I am trying to silence the giant stopwatch in the back of my head, ticking time away until the next appointment.

Truth is if I don’t pull the battery out of that thing, I may lose my mind!

It’s not all neat and clean, this whole Cowden’s mess. Although when I stop to think about it, it is readily apparent that life is far from neat and clean.

Reality is that life is complicated.

Life carries with it no guarantees.

Life is what you make of it.

The struggle for everyone is different. Mine is a struggle with my mind.

Beating Cowden’s is not like training for a sprint. Nope. We are training for a hilly marathon in the snow. We have to build the endurance – and find a way to enjoy the training. Even the really painful ones.

See, if it was just me suffering – it would be easier. But it’s not. And truth be told, having my kid ask me every night last week if I found out yet “Do I have cancer, Mom?” Well, that was downright exhausting, I am NOT looking forward to doing it again, in 6 months, or ever. But, reality tells me there will be more biopsies on the horizon.

So we spent the weekend visiting with some family, dusting off a few things that hadn’t been tended to, finally opening some Emails, and important documents about the new car (a few weeks late) and just trying to readjust… to down shift from acute worry into chronic worry.

Well, that isn’t actually the goal. The goal is for me to shelf the worry altogether… but baby steps please.

Ironic that I am currently the thinnest I have ever been, and in the worst shape of my life – simultaneously. I fell on Saturday. Over the dog. She was on the sheets on the basement floor that were waiting to be washed. I ended up on the floor, my knee and wrist banged up, and my back in spasms reminiscent of the car accident.

My calendar tells me we have about 5 weeks until the next major doctor cycle. Good thing. I need a chiropractor to help me move. and I need a few days without other appointments in order to get there.

The 6 month thing… well that’s not just twice a year. That would be neat and clean. No, the 6 month thing seems to just be ongoing. We try to make the breaks as long as possible. You know, so in between we can deal with the new adventures life tosses our way.

I am going to focus, and keep trying to get this one day at a time thing down. I am going to stop and look around more. I am going to try to enjoy the ride. It won’t be easy. But I am on it. I promise.

I need a new pair of sneakers for this marathon training.

Who knows, I might just get back in shape yet!

Blessings… and patience

Published on January 10, 2013 by beatingcowdens2 Comments

We try to stay focused, and distracted at the same time. Even Meghan knows this is important news. We laugh, we pray. We hold each other up. We wait…

One step at a time

Published on January 9, 2013 by beatingcowdens14 Comments

Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)

The surgeon said that the hamartomas are there. They are large, but they are stable. Stable is a nice word. So, because they are stable it implies they are benign. This is another nice word. The game becomes seeing if they remain stable. So, in 6 months I will have another MRI. If they have changed – it comes out. If they haven’t we can continue to talk about keeping it.

Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s. Is it by coming through with the most organs still intact and cancer free? This is such a strange, relentless disease. It’s research, while still in its infancy is coming. But, I have to wonder how much more they will know a year, or 10 years from now. And, whether I will like any of it.

We are waiting. And we know that we are not alone. We are waiting for Meghan’s results, and its nail biting, agonizing waiting. But, Felix and I talked tonight and wondered what news would make us happy. There was no easy answer.

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous. They had scored a 3 out of 5 on some scale they use. He told us they would turn. We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious. But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later. Tomorrow will mark an agonizing 2 weeks since we went for this sonogram. Waiting. Worrying. Wondering.

When they tell you its “when,” not “if,” it changes things. No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome. It’s almost like a time warp. A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.

Six months seems to be all you really get. Well, now what I have lost a few organs, I get a year on those follow ups. But everything else is 6 months. For both of us.

I tried to sync them up. So that maybe the worry wouldn’t seem continuous. But it hasn’t worked yet.

I try not to think too far ahead. You know what Mom says about planning anyway.

And to think about this in constant 6 month cycles, well… forever. It’s a little too much to manage sometimes.

So, we take it one day at a time. Sometimes one hour. Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

No place like home

Published on January 8, 2013January 8, 2013 by beatingcowdensLeave a comment

We are home.

The procedure is finished.

A scheduled 1 PM start turned into 2:45 on an empty belly.

But, it went fine.

The doctor got what she needed.

Now its up to the pathologist.

So, we wait.

We pray. (THANK YOU ALL…. WE FELT THE LOVE ALL DAY!)

I have a glass of wine (or two.)

We should have an answer no later than Friday.

Early to bed tonight.

Tomorrow I get to meet a surgeon about my spleen.

Cowden’s Syndrome is EXHAUSTING!

Waiting…

Published on January 2, 2013January 2, 2013 by beatingcowdens3 Comments

I am waiting.

Still.

I am tired.

I am angry.

I purposefully picked the best hospitals.

I searched out the best doctors.

My goal was to avoid useless waiting.

Instead I spend days at a time looking at my phone.

Waiting for it to ring.

I think my new case has marks from the imprints of my hands.

I don’t know what I want… but I want to get out of “the waiting place.” I spend too much time here and its unhealthy.

An excerpt from one of my favorite Dr. Seuss books, "Oh the Places You'll go!" — An excerpt from one of my favorite Dr. Seuss books, “Oh the Places You’ll go!”

Thursday they said the biopsy should be scheduled by Friday or Monday. It’s Weds. at 7:30 PM. No worries. I have called. It didn’t help.

It’s a small nodule, the one they are concerned about. It is less than 2cm. But, excuse me for being anxious -even 10 year survival rates of about 95% serve as little consolation when the numbers refer to your little girl.

And what about my damned spleen? Clearly not a medical emergency, but the holidays messed with the waiting there too. I was told 9 days after they received the CD of my sonogram that it was blank. Really? 9 days? No word back from them about a plan either. I especially loved the part right before Christmas when my oncologist told me hamartomas are “almost always benign.” Great. See, prior to that conversation, I thought they were ALWAYS benign! UGH!

I am trying. And I will be fine. I guess some days I am allowed to be tired and grumpy like the rest of the world. As long as I remember…

Better get some loud music and another glass of wine. I think I need to dance the wait away!

Lessons Learned in 2012

Published on December 31, 2012December 31, 2012 by beatingcowdens9 Comments

What a year! Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect. As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital. Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be. The more things change…

In 2012…

I lost the ability to say, “I can’t.” Instead I gained “Nerves of Steel” attacking this syndrome head on.

I lost my self pity and gained determination watching my daughter start her own awareness campaigns.

I lost my fear of driving on highways and in big cities. Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.

I lost my fear of ridiculously large medical bills. Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.

I lost about 3 more sizes, and have finally settled into clothes that fit.

I lost my muscle tone, as wild days kept exercising at bay.

I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.

I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…

I lost my fear of breast cancer and those ridiculous breast MRIs!

I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.

I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.

I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.

I lost my uterus, and my ovaries, but I was done with them anyway, and I gained permanent birth control and instant hot flashes!

I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.

I lost my old cell phone, and finally traded it in for a “smart” phone.

I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.

I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”

I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.

I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall. I always loved them with all my heart, but I will remember how lucky I am each and every day.