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Forever- it’s all about perspective!

Published on June 25, 2013 by beatingcowdens1 Comment

Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation. New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.

Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.) Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.

There are some people she misses from her old school. There are some people I miss. There are circumstances neither of us miss at all.

This wasn’t the plan. But really, as I keep learning – we don’t actually get to plan everything.

Learning experiences. That’s what they are.

You never really know what tomorrow will bring.

Make the most of what you have where you are.

Trust your heart and your gut. If it feels broken, it probably is.

Reduce your stress. Eliminate toxins. Its good for the body, mind and soul.

No experience is wasted. No interaction is a loss. People come in and out of our lives, some for a season, some for longer – but always for a reason.

And now there is summer.

Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.

Thursday we visit Sloan Kettering again. Time for the thyroid sonogram. How could six months go so fast? And as the appointment closes in she starts to articulate her fears. They are the same as mine. I should know that she is smart enough to process. To understand that they are looking for thyroid cancer.

On Friday we see the vascular surgeon for a follow up, and then a genetics follow up. Meghan loves to visit the geneticist. She says, quite correctly, that he saved both of our lives. I remind her that she saved mine. She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.” Ever wonder what it feels like to be sat on by the ‘elephant in the room?’ Well, as I gasp for breath – speechless, I give her a hug. No empty promises to offer. I can’t. I won’t. She would see right through them anyway.

This is our life. This is how our summer begins, and between the two of us, it doesn’t really let up. There is little time for camp, or beaches. We will sneak in a few play dates. We will get away for a few days in August. She will read a few great books. We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.

This – this is why we need a life free of toxins.

This is why we eliminate unnecessary stress.

Cowden’s Syndrome carries enough stress of its own.

You see this will be our life – forever. And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.

Forever.

Forever is a long crazy concept. Forever – while trying not to plan too much. Forever.

Forever has this awful way of disappearing sometimes.

I used to think Pop’s vegetable garden would be around forever.

Well, actually I guess it is. I just grow it for him at my house now.

Forever. It’s all about perspective.

Restoring some of my faith…

Published on June 15, 2013 by beatingcowdensLeave a comment

I am of great religious faith, but of really little faith lately in government and politics. Corruption abounds. Decisions befuddle me.

I watched with great interest this week as the Supreme Court heard the case of Myriad Genetics, looking to obtain a patent on the BRCA1 and BRCA2 genes because their work was largely responsible for encoding these genes that drastically increase a woman’s risk of breast and ovarian cancer. BRCA has been in the news alot lately because of Angelina Jolie, and I hope her ordeal has served to increase awareness of genetic diseases and their potential consequences.

BRCA is not the gene affected in my family. In our house its PTEN, another gene that when mutated greatly increases the risk of breast, thyroid, uterine, kidney, skin, and other cancers.

That however, is not the point. So many people missed that this case was even in the Supreme Court, and maybe I would have too – before PTEN entered our lives. But, genetic mutation or not – the implication that a company could PATENT a human gene, and by doing so essentially block out research from any other company or individual is downright frightening to me.

My body, my genes, my cells, or anything else a part of me do not belong to any company. My body is a gift to me from my Creator – plain and simple. I care for it the best way I know how. I seek out natural and medical cures where each is appropriate. Between my daughter and I we see about 15 doctors regularly. We weigh out their opinions, and we make our decisions. We replace them if they don’t meet our needs. This is a freedom that is inherent in this country.

http://www.nytimes.com/roomfordebate/2013/06/06/can-the-human-blueprint-have-owners/permitting-ownership-of-genes-stops-research ( An interesting “before” article)

The thought that a company could patent the PTEN gene, and by doing so, essentially own the rights to a part of my body – AND , even worse restrict the already under-served research for this rare disease had me flat out outraged. I have already had breast cancer. I have already had a double mastectomy. I have already had a hysterectomy. I will be 40 in November.

My daughter will be 10 in August and potential thyroid cancer looms large in front of our faces. She will one day have to face her own breast and uterine cancer risks. I can only pray that there will be some groundbreaking research before its her time.

Thankfully – earlier this week I received an Email from my older sister moments after the Supreme Court handed down their UNANIMOUS decision, an excerpt of which is below.

Respondent Myriad Genetics, Inc. (Myriad), obtained several patents after discovering the precise location and sequence of the
BRCA1 and BRCA2 genes, mutations of which can dramatically increase the risk of breast and ovarian cancer. This knowledge allowed
Myriad to determine the genes’ typical nucleotide sequence, which, in
turn, enabled it to develop medical tests useful for detecting mutations in these genes in a particular patient to assess the patient’s
cancer risk. If valid, Myriad’s patents would give it the exclusive
right to isolate an individual’s BRCA1 and BRCA2 genes, and would
give Myriad the exclusive right to synthetically create BRCA cDNA.
Petitioners filed suit, seeking a declaration that Myriad’s patents are
invalid under 35 U. S. C. §101. As relevant here, the District Court
granted summary judgment to petitioners, concluding that Myriad’s
claims were invalid because they covered products of nature. The
Federal Circuit initially reversed, but on remand in light of Mayo
Collaborative Services v. Prometheus Laboratories, Inc., 566 U. S. ___,
the Circuit found both isolated DNA and cDNA patent eligible.

Held: A naturally occurring DNA segment is a product of nature and
not patent eligible merely because it has been isolated, but cDNA is
patent eligible because it is not naturally occurring. Pp. 10–18.

I follow a group on Facebook for Young “Previvors,” a term used to indicate women dealing with genetic diagnosis that will greatly increase their risk of cancer. They give me hope with their strength, that one day when my own young “previvor” faces inevitable tough decisions, there will be young women around to support her. This link was taken from their Facebook group.

http://www.washingtonpost.com/politics/supreme-court-rules-human-genes-may-not-be-patented/2013/06/13/9e5c55d2-d43d-11e2-a73e-826d299ff459_story.html?hpid=z1

I can sleep a little easier today, even as Paul Offit continues to swear that ALL vaccines are safe and effective, and we should NOT take our vitamins.

http://philadelphia.cbslocal.com/2013/06/15/philadelphia-physician-dont-take-your-vitamins/

And even as I get a little queasy about the protections issued to Monsanto and their genetically modified foods, I have to feel a little better. This week – the Supreme Court got it right.

Howard works to put a stop sign in a deadly Staten Island intersection

Published on June 4, 2013 by beatingcowdens4 Comments

Activism… Hopefully to save some lives!

I believe…

Published on May 22, 2013 by beatingcowdensLeave a comment

I believe that there are lessons to be learned from every event in life- especially the ones that don’t turn out like we plan.

I believe in looking for the positives; when plans change without warning, when people disappoint us, when we are thrust onto paths we never wanted to travel and into circles we never knew existed.

I believe that our indoctrination into the world of Rare Diseases came with an invitation to sit back or step forward. We choose to step forward. I believe we will make a difference.

I believe in prayer, and God, and miracles, and angels – and I am not ashamed or embarrassed to say so.

I believe in a God that doesn’t plan for bad things to happen, and who cries with us when they do. I believe that same God will give us the strength to get through the trials and tragedies and all our adversity – if only we ask.

I believe in angels, and speak regularly of my cousin Meghan, our guardian angel. But, I also believe there are armies of angels around us. I am thinking especially today about the father and his 4-year-old daughter that were hit by a fire truck at the same intersection I had my accident in November. Nothing short of angels pulled them both from the car – shaken and banged up, but very much alive.

I believe in miracles-large and small. I have witnessed at least one large one, when my sister’s beautiful niece pulled through a very scary life threatening virus 2 years ago. I believe that miracles happen every day – all around us. But every day I witness miracles, as the flowers bud, and the birds fly, and the children grow.

I believe that adversity can only define us if we let it. Our struggles surely shape us, as we grow each day – but how we handle them affects us, and the people around us. I believe that Cowden’s Syndrome – through my daughter’s diagnosis, saved my life. I believe that PTEN mutations, and broken tumor suppressor genes are scary – but not “hide under the bed” scary. They are more like “you can try that roller coaster you don’t like” scary.

I believe we are allowed to be frustrated and sad and angry and mad. Every single one of us – sometimes. I believe that life can be very, very, very hard. Overwhelming at times. But, I also believe in doing my best to channel that energy, and teaching my daughter to do the same.

I believe in smiling more than frowning. I tell Meghan that she will draw more people to her with a smile on her face. She listens.

I believe that good things can come from unexpected change. New friendships and old ones become more solid when tested. People you never expected can go to bat for you – and look out for you.

I believe in surrounding myself with people who are “real.” Who say what they mean, and mean what they say. I believe in surrounding myself with people who have all types of beliefs, as long as they have a kind heart and are true to themselves.

I believe in speaking out about my own life, and my own experiences; whether they are medical, allergies, emotional, physical because keeping them inside doesn’t help a soul.

I believe writing helps me channel my own energy into a productive outlet. I believe I will spend every day on this earth in some way thinking, addressing, or working through a medical issue for Meghan or I. I believe – if I stay focused it will not consume me. (Although from time to time I may need some help!)

I believe that people who are only in this life to gossip and spread lies and false information are toxic.

I have made a pact to rid my life of toxins. I believe with a lot of determination it can be done!

Puzzle Piece

Published on May 9, 2013May 10, 2013 by beatingcowdens3 Comments

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.

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.

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. http://pinterest.com/pin/290974825894950598/

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 https://www.facebook.com/ptenworld?fref=ts

The Global Genes Project https://www.facebook.com/globalgenesproject?fref=ts

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.

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.

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.

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.

Bathing suits and other insecurities…

Published on May 6, 2013 by beatingcowdens4 Comments

Coming into a year of blogging, with just a few more early memories.

beatingcowdens

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…

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“You are Special – You are 1 in 200,000”

Published on May 3, 2013 by beatingcowdensLeave a comment

As the trip down Memory Lane continues… not much has changed. I guess this is part of Cowden’s being “forever.” This is from May 14, 2012.

beatingcowdens

My daughter gave me a button for Mother’s Day. She made it in school. It says “You are Special” on the front, and then on the back it says “You are 1 in 200,000.” Decorated with the obligatory hearts, she had made her point. Even in school, creating this “fun” assignment – she remembers. I can call it “unique,” “special,” and all sorts of motherly words. But she knows what it means. It means different.

She and I may be the same – in many ways, but not her friends. She can not ask her friends if their breasts hurt as they begin to develop at 8… because in reality she is different in this too. At 8 and a half she stands just shy of 4 foot 9. She weighs 73 pounds and wears a woman’s size 5.5 shoe. All sorts of wild things are happening to her body…

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GOOD people bring out the GOOD in other people

Published on April 20, 2013 by beatingcowdens1 Comment

Being a Mom is challenging, but rewarding.

Working full-time is necessary, and carries some definite benefits, but huge time demands.

Being the Mom, and managing the bills, the groceries, and the lions share of the housework (and I have a helpful husband! :-)) is well, some days like standing at the bottom of a really tall mountain…

Having a chronically ill child is trying on the nerves. Worry and doctors appointments compete against waiting and absorb the bulk of any free minute.

Having a chronic illness, a rare genetic disorder like Cowden’s Syndrome yourself – well, it creates some challenges. And that is putting it nicely.

But, to combine all of the above… well I can tell you I wouldn’t trade any of them – but I am exhausted.

I spoke this week with a friend from work. Her son is chronically ill, but was suffering an acute episode one afternoon. This week Meghan felt fine. So, I had the opportunity to spend a short amount of time empathizing. While I was unhappy that he child was ill, I was in awe of her poise as she anxiously awaited news of her son’s condition in NJ. I think my heart was in my throat – yet my admiration for her composure under pressure could not be stated.

I am sure I am not the only one exhausted. I know I am not the only one contending with these issues. And, even if they were different – dare I say I almost felt normal – listening to others for a change?

My perspective is usually pretty good. I work hard to put myself in other people’s shoes. I talk a LOT with Meghan, about various social situations, and try to help her see that her point of view is never the only one. We have most of our best conversations in the car.

Tonight as we headed home from my in-laws I could no longer escape the conversation about the horrors of the Boston Marathon. I had shielded her for a few days because I truly just couldn’t gather my words.

So, tonight as I explained what the bad people had done, and I answered her questions, she was, as the rest of the nation was, absolutely appalled. And I spared her MOST of the details.

She wanted to know why people have to suffer. And she wasn’t talking about herself. She was talking about these victims, as well as other people – children and adults, with cancer, or other major struggles.

There was no right answer. So I gave her the best one I could. We have things in our lives to deal with – all of us. I don’t believe God picks us out to suffer. There is evil in this world. But I do believe, that we are given the strength to handle our struggles if only we ask. And, we are given the tools to use our struggles to make a difference in the world.

So she asked why people do evil things. Again – no right answer. So, I gave it my best. I explained that there are evil, awful people in this world, and she will encounter them at certain points in her life. But the beauty of it is, that for every evil person, there are probably hundreds, or thousands of good people. Those are the people we seek out in our lives. Those are the people we center our worlds around.

People are not inherently bad. Most people are downright good. And I reminded her of the stories I have told of the heroes of 9/11. And then I told her about he heroes in Boston.

I told her of the resolve of the police and all emergency personnel that REFUSED to give up until their people were safe. I explained how they put their lives on the line every time they rang a bell or even took a few steps. Yet, they would NOT stop. They shut down a city and they made it happen. They worked together, and they arrested their suspect. These are the good people.

And then there were the ones, who helped the injured at the marathon. Civilians and emergency workers alike. They ran in to give a hand because people were in need.

There are some rotten things in this world. There are diseases and illnesses and suffering. There are awful, evil people too. But we, we will live our lives focusing on the good guys. The ordinary folks that “wear the capes.”

This world is not full of evil people. It is full of good people who so often stand together intolerant of evil and focused on human decency.

God Bless the Boston PD, and all the emergency workers, and all the brave citizens.

We stand with you. We thank you. for reminding us that there are so many good people in the world.

Transitions

Published on March 28, 2013 by beatingcowdens2 Comments

Transitions.

It seems they are happening all the time, probably for everyone, but this week we are really feeling them.

When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.

Watch this. Scan that. Come back and see me about that… UGH.

Transitions.

So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream

Transitions.

She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?

Transitions.

Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.

Transitions. Things are ever changing.

First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?

Transitions.

No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.

Transitions.

Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.

Transitions.

Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.

We are finding our new roles, as people charged to raise awareness, and to spread the word.

We are figuring out where we belong. In school. In sports. In extracurricular activities. In religion. On our lives.

Big changes all around. God’s plan unfolding. Eyes and ears and heart wide open.

Transitions…

“Raising Small Souls” – a must see video

Published on March 14, 2013 by beatingcowdensLeave a comment

Normally I try to keep my life as a teacher, and a Cowden’s mom separate, but as I prepare for Meghan’s IEP meeting on Monday, I am reminded of this video.

I first saw it many years ago – but from time to time I watch it again. My Meghan does well in school but has a host of other issues. And, daily I see, admire, and love children who struggle terribly in school.

I think its about time they all get what they need. If only I knew how to make it happen.