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The Storms of Life

Published on October 31, 2012 by beatingcowdens7 Comments

As we prepared for Hurricane Sandy as best we could on Monday morning, we stopped by my grandparents house to tie up their barbecue and a few other things. Wind precautions.

We stayed for about an hour. We had comfortable conversation in the living room. The same living room they have occupied my whole life, and for years before I was born.

We spoke about the storm, the trees, and being ready.

We spoke for a while about some of the storms they have seen in their lives.

I am always amazed when I stop and really think of all the changes that have taken place in the world since they were born in 1919 and 1920. They have done such an admirable job keeping up – with everything.

They have been a constant source of strength, support, and pillars of faith for our family in the midst of many storms.

So as the wind picked up, we kissed them and headed home.

Some time around 3:30 I started to hear of power outages. I instinctively picked up the phone to check on them. Pop answered with a concerned voice. “Your grandmother fell in the basement. Your Mom and Ken are here. The ambulance is coming.”

Suddenly Hurricane Sandy didn’t scare me as much.

These were the storms I worried about when I wrote this Sunday night…

“The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love.”

_DSC0171 — Grandma‘s 90th birthday in 2010

Hours ticked by. Shoddy cell phone service kept the updates brief. Pop went in the ambulance. Mom and Ken followed behind. Head CT for the trauma to the head, confirmed no bleeding inside the brain. Stitched and stapled, they waited for more confirmations – no broken bones. A significant bruise on her hip earned her a bed in ICU as they are waiting to just confirm that it’s not bleeding either. Strong vitals. Strong woman. That’s my Grandma.

_DSC0257 — Four generations of strong women!

I went to visit her in the hospital. She was itching to get home. Annoyed by all the fuss.

The hospital, which had lost power was running on generators. The storm was wild and raging all around.

The nurses in ICU were calm and patient. Attentive.

I listened as they recounted medical history and was impressed and almost stunned to hear Grandma at 92 has NEVER had surgery.

Guess the Cowden’s Syndrome didn’t come from her!

Trees crashed all around us. Storm surges cost so many nearby their homes and their possessions. It was hard to stay upset for long about the inconveniences of lost power.

I spent a few hours last night with Grandma again in ICU. We are hoping she is released to home soon, and hoping her power is on REALLY soon. I watched my grandfather, still a pillar of strength at 93, by the bedside of his bride of almost 67 years, and I once again was awed by their ability to weather the storms of life -together.

No need to remind me how lucky I am. I already know. No need to remind me that angels exist in this life – several were clearly softening Grandma’s fall Monday. No need to remind me that the storms will pass. I have seen the models of resilience. I have been blessed with them for each day of my life. I will cherish them always.

I will pray. I will pray for grandma, and her health. I will pray for those devastated by hurricane Sandy. I will pray prayers of gratitude for those who weather the storm to help others. And, I will offer prayers of thanks… lots of them.

Paying it Forward

Published on October 28, 2012October 28, 2012 by beatingcowdensLeave a comment

Meghan‘s school motto is “Pay it forward,” and it is one of my most favorite things she has learned in her 4 plus years there.

The students are taught that it is important to give to others, with no expectation of return. And they develop the knowledge that when others do for them, favors can not always be directly repaid. It is actually a good philosophy of life. Do for others for the sake of doing good. If everyone follows that, chances are when you need a helping hand, someone will be there to stretch it out for you.

So this morning we joined some of my colleagues from school at the “Autism Speaks” walk. We are facing a major hurricane tomorrow. Schools have already been closed. The MTA has shut down bus service, yet the turn out at the BEACH for this walk, was absolutely amazing. I was full of pride as I stood with my colleagues in support of one of our own. The proud Mom of a handsome autistic son, and an absolutely beautiful daughter, is a woman of true class. She is a teacher at my school who I am grateful to have as a friend.

Her team raised close to $2,000 in support of Autism research, and the love in the air this morning was overwhelming.

Everywhere I looked there were fighters. Young autistic children, and their support networks – strong and mighty. Prepared to do whatever they can for their children.

Even though our battle and journey differs from theirs, I felt I was among kindred spirits. Scores of families that keep fighting, keep battling, to ensure their loved one has whatever they need. In so many ways we wear the same…

We will fight, by whatever means necessary for our children. That makes us all the same where it matters. The battles are different – but the war is essentially the same. And we will not be stopped until it is won.

Paying it Forward…

This is the same family, that created Meghan’s denim ribbon necklace. This is the same Mom, who – even though she has a million things on her mind each day, took my daughter’s need for an identity to heart. Wearing her own, beautiful diamond puzzle piece each day, she took Meghan’s concerns home to her husband the jeweler – and he made Meghan’s needs his priority.

autism necklace — Her own necklace is far more beautiful, but the point is she “gets it.”

And it wasn’t long before Meghan had this beautiful piece around her neck, representing rare genetic disorders, like our Cowden’s Syndrome. There was nothing of its kind in the world, but not to be deterred – this Dad, who also “gets it,” didn’t stop until it was made. My girl has her identity now.

necklace on table — A denim cause ribbon, crafted after the Global Genes Project‘s slogan, “Hope it’s in our Genes!”

Hopefully one day soon, The Global Genes Project will be able to sell these to anyone who wants them. I know talks are taking place right now, and it is so exciting.

So this morning, it was easy to make our way down to the beach, to support Autism Speaks, and a great family. It is easy to remember it is not all about us. That others suffer deeply, and daily.

We are home. Showered an in our PJs. We are prepared as we can be… waiting for the storm. But we will persevere. It will be OK. The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love. Pay it forward. You will be awed by the return.

It’s not all about us

Published on October 15, 2012October 15, 2012 by beatingcowdens3 Comments

And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time.

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!

Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out. We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.

Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

Cowden’s Syndrome took…

Published on October 3, 2012October 3, 2012 by beatingcowdensLeave a comment

Well, it took my thyroid, or at least any functioning part, long before I knew why.

It took my boobs in the prophylactic mastectomy that wasn’t so much prophylactic.

Cowden’s Syndrome took my uterus. But I didn’t need it anyway.

It took my ovaries, but it gave me hot flashes in return. Fair trade?

Cowden’s Syndrome took my checkbook, and used it for copays, and parking lots.

It took my calendar – and filled it with all sorts of places I didn’t want to be.

Cowden’s Syndrome took away my peace of mind, and filled it with worry. (OK, MORE worry…)

It took my appetite. If you don’t count Cheerios, ice cream, and salad.

It took away all my comfortable clothes, and has forced me to replace them in smaller sizes that appropriately cover my fake boobs, without losing track of them in shirts that are too large.

BUT,

it gave me the means and the motivation for education and early detection.

It gave me the motivation to step forward and say, “I don’t need THESE any more.”

Because I have Cowden’s Syndrome I will not suffer at the hands of breast or uterine cancer, and I will do my damndest to make sure my little girl doesn’t either.

Cowden’s Syndrome gave me the courage to fire clueless doctors, and educate the ones who care.

I encountered an acquaintance with breast cancer today. She had on a beautiful wig, and is in the middle of chemotherapy. I felt guilty as she asked me how I was feeling. She knew of my ordeal last spring. Survivor’s guilt I think. It broke my heart to see her hurting, even though I feel she will be well again.

Cowden’s Syndrome SUCKS, in so many ways. But it is part of us now, and like anything that becomes part of you, I believe you have to yank the good out of it.

Cowden’s Syndrome has taken a lot from me, from us in this house. But the knowledge we have gained will give us second chances that some others may never have.

Cowden’s Syndrome took from my body – but in many ways it gave to my soul.

Perspective.

“If I get to keep my spleen…”

Published on October 1, 2012October 1, 2012 by beatingcowdensLeave a comment

As I sat in the dentist’s chair a few weeks ago getting another bridge organized, I enjoyed pleasant conversation with my dentist. I know, that may sound strange, but really she is quite pleasant, and very talented at what she does. She is also the Mom to twin friends of Meghan‘s from her class, so we have known each other over 4 years now. She is a mom, wife, dentist, photographer, fellow blogger, volunteer, and a generally nice person to be around. I am grateful to call her a friend.

As I was getting ready to go she asked me when she could schedule me for scaling and root planing. After I had her explain the depth of the cleaning that was involved, and even after she explained WHY it was a good idea, my instinctive answer was , “NEVER!”

Over the last 6 months alone I have had breast cancer, a double mastectomy, with reconstruction, and a hysterectomy. I have been scanned, had countless MRIs, and just recently completed a colonoscopy/endoscopy. To say I am DONE being poked and prodded would be the understatement of the year.

So, as I listened to her careful list of reasons why this scaling and root planing procedure is a good idea, I just wasn’t sold on the concept of ANY more pain.

I told her, “When they tell me I can keep my spleen, then I will make the appointment.” She laughed out loud. But this, this is what life with Cowden’s Syndrome has become. I am willing to celebrate being allowed to keep one of my organs, with a dental procedure that is probably quite necessary anway.

But, I feel like life in this body is about triage. I have to take care of things one step at a time.

So, the oncologist called today about my spleen. They were comparing the ultrasound pictures from April on 2012, and November of 2011 with an MRI in August 2012. She sent it to a lot of people to look at. The answer..maybe.

Really, are you surprised?

You see the ultrasounds showed identical, medium size “hamartoma.” (PTEN Hamartoma Tumor Syndrome is the umbrella term for Cowden’s and several other related Syndromes) But, the MRI showed 2 distinct, and one fairly large “hamartoma.” The good news about these is they are benign. The problem is – if they follow the body’s tendency to grow and grow things, they won’t be able to stay there too long.

I know, you can live without a spleen. You can live without a uterus, ovaries, a cervix, breasts, and a whole host of other things. But, just because you CAN do something, doesn’t mean you SHOULD.

So, I will go back in December and repeat the MRI. While they are there they can make sure the tiny cyst on my kidney stayed tiny too.

As soon as they are done. Once they tell me it is all stable, and I can keep my spleen. I promise, I will be a big girl and get my scaling and root planing done.

At least I have a kind, gentle and pleasant dentist – and she is looking to keep things IN, not take them out!

AND: http://gracelynsantoschronicles.blogspot.com/

Feeling Welcome!

Published on September 29, 2012 by beatingcowdens3 Comments

I very rarely post twice in one day, but I am in absolute awe.

We have been somewhat private about our struggles at the church I grew up in, but I have left no mistake that we felt forced after almost 40 years of membership, to search for a church where we could worship with clear heads and open hearts.

We traveled from church to church, visiting several over the last 6 months. A few weeks ago chance, or maybe the Holy Spirit, led me into the doors of one I never expected to even visit.

We received a welcome I could not have expected. The pastors went out of their way to seek us out, to introduce us, to help us tour the church, and to give us a brief background on their mission.

They invited Meghan to a music class which she has attended weekly.

Last Sunday in church, Meghan was invited up to collect the Thanksgiving food offering.

My conversations, however brief, have been remembered and referred to. I was told we would be welcomed in every way, but that any changing of my membership from my existing church, because of the highly charged emotions would be discouraged for at least a year. No pressure just a place to offer praise.

We have a meeting with the pastors next Friday. My husband and I together, to learn more of their programming and their theology.

This afternoon I received a phone call. The pastors wanted to make sure they invited Meghan personally to Sunday School, which begins tomorrow. They wanted to invite our family to join theirs at their afternoon cookout.

The call lasted 3 minutes. But they took the time to make it. They took the time to care. They know nothing of our struggles or our complex medical issues, or our Cowden’s Syndrome, but they care.

God’s plans are often mysterious, but my eyes are wide open so I can see where and if I am being led.

As I have said so many times before – God has been holding my hand through this journey. I am surrounding myself with supportive people – of all faiths.

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears. Sometimes a thousand sleepless nights are what it takes to know you’re near. Sometimes trials of this life, the rain the snow, the hardest nights, are Your mercies in disguise.”

http://www.youtube.com/watch?v=XQan9L3yXjc (The Laura Story video)

LAZY?

Published on September 24, 2012September 24, 2012 by beatingcowdens1 Comment

I think its Ok to say we have character. Lots of people I know have character. That’s why I spend time with them. I know lots of people who have traveled through their own trials and persevered. We are all unique, but the same in our drive and ambition.

Why is it then, that not all of our doctors have character? Some do. They work so hard. Even when they are throughly confused, their wheels are always turning. They return my calls, and my emails. Instead of thinking, “This Mom is NUTS!,” they think,”What is wrong with this kid, and (more importantly) how can I help her?”

We have some of both kinds of doctors in our lives right now. In all honesty, I have had better luck overall picking from the doctor pool than Meghan. Even with some bumps in the road, my problems, not withstanding the Cowden’s Syndrome – have all been fairly easy to diagnose and treat so far.

Meghan on the other hand has run in circles since she was a baby. We have had this kid at a flow chart of professionals, and while we have gotten some significant and important answers along the way, I find it almost inexcusable that she is still suffering with random, unexplained fevers and headaches. I find it disgraceful that she has been on a rotating cycle of antibiotics about every 8 weeks for over 2 years and no one but me is screaming about it. I find it downright scary that she needs 100mg of Celebrex a day to move, and 1600 mg of acyclovir to keep the Herpes Simplex infections at bay.

So, when we went to see our beloved pediatrician today, who is deeply bothered by this recent fever/headache thing, I brought with me an EMail exchange I had shared with a doctor at a world-famous NYC hospital. Sparing you the exact read, after summarizing the last 2 weeks, and sending lab work, as well as a brain MRI with an unusual finding, this doctor responded that he felt there was “no necessary follow-up, and he is sorry Meghan isn’t feeling well.” After reading this aloud to my soft-spoken, proper, pediatrician, his calm reply was, “He is just LAZY! And you still NEED to find her a neurologist.”

Interesting to contemplate that this doctor from this world-famous hospital was being called “Lazy,” but I have never heard my pediatrician speak ill of anyone. Now I doubt the man is lazy in the literal sense of the word, but in the “problem solving, figuring out the mysteries of what makes my unusual patients tick” way, I guess he is.

Meghan’s pediatrician is one of a small group of doctors we are blessed to know. They are few, but they love her like she is their own. They believe her. They validate her. And they won’t stop pushing until they figure it out.

So, while I get tired from running to doctor after doctor… tonight I am grateful for the men of character. The ones who take seriously their oath, and who remember why they became doctors to begin with.

Normal?

Published on September 21, 2012September 21, 2012 by beatingcowdens2 Comments

It’s Friday. And, the only medical office we have been inside of since after my colonoscopy Tuesday is the dentist. That’s a perfectly normal place to go, and the dentist is kind, and painless too. Three days. One appointment. And a “normal” one at that. Plus, no cavities.

This is exciting in my house. Everything we do seems to be peppered with a test or an appointment. So when it’s not, it’s time to celebrate a brief glimmer of normal.

Today I had appointments – but they were for the betterment of me, in the most psychological way. Nope, not a psychiatrist. I had a gel manicure, my eyebrows done, and then Meghan and I went for haircuts.

To top it off, while she went to a well run, fun “God squad” meeting, I snuck out for dinner with a really cute guy who makes me laugh a lot. We even have matching wedding bands! 🙂

So, tomorrow is the blood work to see if the WBC has begun to rebound. Tomorrow for the blood, Monday for the pediatrician. Tuesday for the fabulous Dr. Jill at PT, Weds. for another doctor… to be named later.

But for today – my little girl and her one of a kind necklace seem to be on the up side of healthy. She is about to go to bed, and close out today with her award-winning smile.

Today. Today is good. We are here. Together. We had only fun places to be. Today I am thankful for all the people who I crossed paths with.

Trying not to worry about tomorrow. Lord knows tomorrow has enough worries of its own.

Race for the Cure (minus 1)

Published on September 8, 2012 by beatingcowdens6 Comments

survicor — It won’t be nearly as much fun without my biggest fan!

Tomorrow morning I will gather in Central Park with some 25,000 other runners and walkers, survivors, and friends and family to support the Susan G. Komen Race for the Cure. This will be my first race in a pink “survivor” T shirt, insisted upon by Meghan, my biggest fan.

This was our year. I registered Meghan as a “real” walker. She got an official race day T shirt, and a number too. She was so proud to be walking with her Mom, and Grandma – two “survivors.” She was thrilled to be registered, and wear a number. She was looking forward to waking up super early.

Except, she won’t be coming.

At 6:30 tomorrow morning my Mom will pick me up. We will each wear a special banner designed by Meghan. We will pick up our friend, another survivor, and we will head to Central Park. The car will hold one less this year, and if I might say so myself,

I thought it all day. I thought it to myself. I even hid in my room and cried a little, ok a lot. I had quite the pity party going for my girl. Asking over and over WHEN she is going to get a break, and WHEN is something going to go her way, and WHY can’t she seem to just have some fun when her HEART and SOUL are ALWAYS looking out for other people. And, not to be surprised, she never said once all day that it wasn’t fair.

She encouraged me to go, even without her. She said she was sad, and disappointed, but we made a date for the American Cancer Society walk on Staten Island in October.

She is asleep on the couch right now with 102 fever. She woke up great this morning. By noon she was developing a fever. She was complaining of a headache. By 2 PM she had cleared 102 and we headed out to the urgi center. After an OBNOXIOUS 3 hour wait, we left with the diagnosis of (“It’s probably”) strep, and (maybe) and ear infection. I sometimes wonder if they train to be meteorologists, and end up as doctors – probably…maybe… UGH!

He second dose of Clindamycin will be at 11PM. By noon tomorrow we will know if it was bacterial or viral because she should feel much better, and the headache – that always scares the CRAP out of me, should be gone.

By noon tomorrow I will be home. Back from my race. Full of conflicted emotions. I have been to this race almost every year since 1998, but Meghan kept calling it my “first” race. I will be glad to be with my mom and my friend, but really, what good is any race or celebration without your biggest fan?

Stay tuned…

Published on September 5, 2012 by beatingcowdens2 Comments

I learned a few things as I set up my classroom this week. Many of them I will not say here, because Mom always says, “If you don’t have anything nice to say, don’t say anything at all!” Well at least that’s what she used to say when we were young… but I digress.

I have been without my own classroom for a few years now. I have been a traveling math cluster, and then last year shared a room with a colleague. This year I was given my own 3rd floor room. It is harder to have a room, but change is good – so I was ready and excited to try it out. And grateful for the opportunity.

See last spring my colleague and I were told we were to share the 3rd floor room. So, in the heat of June we brought everything we could (using LOTS of kids to help) up to that room. The rest of my personal belongings (from the first 10 years in the classroom) were stored in a nearby storage closet.

Sometime over the summer I got an Email that the schedule had changed. The third floor room would be mine alone, and the 1st floor room would belong to my colleague. So I set about the business of buying all the things you need for a room.

I brought my things in on August 22nd, but I couldn’t stay to set up. Meghan had an appointment. As a matter of fact I couldn’t come in the next day either because of two of my appointments -so I first got in to get settled yesterday.

Much to my surprise, the storage closet where all my personal things were had a new lock. I didn’t have a key so I took that as my clue to vacate.

Now, prior to the Mastectomy, I was pretty strong. I helped my husband renovate the house. I know how to move heavy things. Prior to the hysterectomy and the mastectomy – just a few short months apart, and just 6 months ago… I felt like this.

Now, after moving boxes for 3 hours yesterday. up and down the stairs, even with the help of a few well intentioned friends, I feel more like this.

I am sore in places I had no idea it was OK to be sore. This was either an eye opener to my age, my body’s fatigue, or the fact that it is time for some serious exercise.

But, after 2 days my classroom went from this:

To a lot closer to this:

Which is a good thing, because I just don’t do clutter well at all.

So when I left a little more relaxed it was time to get a confusing phone call from the doctor.

Meghan’s blood panel appears normal, but I have to compare the thyroid numbers off the last one when I see it. That was OK, and then he said the MRI had an “ODD” finding – shocker!

The “anterior pituitary tissue is seen though it is diminutive in size for age.”

Still actively trying to figure out what that means, especially because we were scanning for a pituitary tumor to try to find the cause of the early puberty. Now, clearly the pituitary is TOO SMALL? Really? I just can’t figure this out.

Grateful there is no tumor, I asked the doctor if it was insignificant. To which he replied, “Everything means something. I have never seen this before but I will be asking a lot of questions.”

So, fourth grade for my big girl tomorrow. One day at a time, this is all we can do…