I am absolutely high on adrenaline right now…

In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.”


I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.

Tonight was the night.

What an amazing show.  I am so glad to be familiar with it now, and you should check it out!

Somehow the words came pouring out.  It’s amazing what speaking from the heart can do.  I can only hope that someone tonight knows what they didn’t know before.

I find there to be no coincidences in life.

After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer.  Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.

(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much!  But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)

Near as I can figure these days, breathing increases your cancer risk.  But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.

There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us.  But we can do what we can to help.

There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.

People ask why we devote so much of our time, energy and budget into healthy food.

Genetics are not on our side.  But we can fill our bodies with healthy, pure, organic superfood.

These days the core of the nutrition in our home comes from Isagenix.  It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.

This company provides quality food, and they make it possible for you to afford it, because you can eat your Isagenix for free.

“You plus two, them plus two.”

you plus two

Well worth my initial investment.  Quality nutrition for my entire family.

We are certainly going to do the best we can at all times.

Our health, no guarantee.  But we are going to do the best we can to keep that “STUPID CANCER” away.

Puzzle Piece

I remember being much younger and loving puzzles.  We would set them out on the table at home and everyone would take some time trying to get it going.  They were big and had lots of pieces and were often slow going at first.  Everything looked the same, and sometimes it could take hours to fit in a few pieces.

Then, over the next few days, and sometimes weeks, with everyone taking a turn, slowly the picture would start to take shape and the puzzle would come together.  It was always so exciting once you could make out the features, and so much easier to plug in the missing pieces.

puzzle 2

I remember the feeling of satisfaction as one would be completed.   There was something especially gratifying about those last few pieces.  It was that feeling of satisfaction.  We set out minds to this.  It took a few of us, but we got it done.  We figured it out – together.

By now you can probably see where I am going with this.

Today marks one year since I wrote my first blog post in 2012.


In one year the posts I have written have been read over 30,000 times.  People have stopped by to read some – or all of our journey with Cowden’s Syndrome.


I have met other Cowden’s Sufferers through this blog, and on the internet.  I have received messages, and corresponded with quite a few.  I have learned their stories, and heard about their puzzles.

puzzle 3

I have also “met” a few with other puzzling disorders,figuring life out and getting by one day at a time.

I am sometimes  forever humbled, and amazed by the odd and abstract idea that people who I don’t know have gotten to know us, and used us as pieces to help complete their own puzzles.

I noticed a link on my blog today from “pinterest.”  Having never been to the website, I clicked the link to find a picture of my family.

I was pleased that it was used in its proper context, and was mentioned in terms of rare diseases.  But, I was still amazed.  Someone had read, and linked, and…

Well, the possibilities are endless.  Thank goodness for the internet.

Where else would I meet people from all over the world,. and swap stories about a genetic disorder with an occurence rate of 1 in 200,000?  Where else would I find organizations like


PTEN World


hope its in our genes

The Global Genes Project

This last year of blogging has been an awakening for me.  It has opened my eyes to so many other people, their stories, and the world at my fingertips.  Since our diagnosis in the fall of 2011 it has become so important to become aware, to gain support, to advocate for others, and for ourselves.

I remember working on puzzles as a little girl.  I remember that feeling of satisfaction when the puzzle was complete and the picture was clear.

I don’t do those kind of puzzles anymore.

Now I figure out how to prepare 2,000 denim ribbons and get them distributed on time for Rare Disease Day.

denim ribbons

Now I work on helping my girl find her place in this world – trying to be a “regular” kid, yet undergoing so many more stressors than any 9 year old should.

I work on puzzles that lead us from one doctor to another, dropping them like leaves off the trees on a fall day.

I work on puzzling questions, and I persist until I get answers.

puzzle 1

I get overwhelmed sometimes – looking for the pieces I can’t seem to find.

Sometimes I want the puzzle to have its edges all done, the way I learned.  I want it to be neat.  I would like all the matching colors to go together

But, that isn’t how life is designed to be.  Not with Cowden’s Syndrome.

Not for any of us really.

Maybe it’s not a puzzle – but more of a domino game… branching off in so many different directions.  Occasionally stopped by a dead end – only to find another path.

Or maybe it’s just a puzzle of an “atypical” sort.  Not one that actually fits in a box.  One that requires patience, time, dedication and focus.


In front of me tonight are 22 pages of blood work drawn on my daughter over the last month.  There are some definite issues.  My phone consult with her doctor is a week away.  In the mean time I am left to try to put it together the best way that I can.

I handle each piece delicately, gingerly.  I don’t want to damage anything, or miss anything either.

There is no picture, no model to duplicate.  There are no directions.  No guide.  Just instincts.  Prayer.  Love and support of friends far and near.

broken pieces into masterpieces

Tonight I will study until I can figure out one more piece.  Then there will be tomorrow.

The journey is long.  The puzzle evolves.  I am not going anywhere.

Thanks for sticking around.