health – Page 12 – beatingcowdens

The Circle of Three

Published on April 14, 2013 by beatingcowdens2 Comments

My heart and soul. My circle of strength.

A few weeks ago Felix mentioned he might like to have a denim ribbon pendant to wear.

They are modeled off the Global Genes Project logo, “Hope it’s in our genes!”

He wanted to be able to show his support for Meghan and I all the time.

So, we had another one made and I gave it to him for our anniversary.

I didn’t imagine the effect it would have on me.

What a magical thing to see the ones you love most joined with a symbol of support.

Symbols are just symbols I know – but what they symbolize can still be powerful.

Felix gives us the motivation, the strength, and the courage to say “I can.”

He makes us laugh. He holds our hands.

He is as much a part of this Cowden’s Syndrome journey as we are.

We are three but we are one.

Now, near or far we remain connected.

There are no “superpowers” in these denim ribbons…

Well, unless you count LOVE, GRATITUDE, COURAGE, STRENGTH, and HOPE!

Maybe…

Published on April 10, 2013 by beatingcowdens2 Comments

And that is what we took.

Stuck in a corner – a stifling corner, with anxiety, and all of its evil friends – we decided to break free.

And I can not think of a better thing we could have done.

Today was Meghan’s 3rd full day at her new school, and while she misses her friends – she is adjusting beautifully to the welcoming students and professionals that have greeted her.

She received an outstanding foundation at her old school – teachers who worked alongside her right up until we made the move last week. She received a foundation from them that will allow her to soar here.

I am eternally grateful.

But there is a time for moving on.

Sometimes it happens neatly at the end of 5th grade. And sometimes it happens before that. This was her time.

Which shouldn’t surprise anyone because nothing really seems to be wrapped up in a neat little organized package – not in life, and certainly not in Cowden’s Syndrome.

She changed schools, but the Syndrome stays. And sometimes that’s a hard reality to swallow.

See she is so excited to meet new children, and to run and play and socialize – we hoped that maybe the release of tension would eliminate the pain. It took a few days for the pain to catch up. But, it moved too. It lives with her – no matter what school. Although I am convinced it is less than it was.

Stress is evil. Tension is its nasty twin. The conbination wreaked havoc on her already struggling body.

Now, there is much less stress and tension, but there is still pain. A knot in the hip that doesn’t want to quit is pestering her still. And while I am grateful that the tolerance is higher, I am not sure if the pain is any less.

Any time an injury lingers, or a pain persists for more than 2 weeks – even if it is intermittent – we have to ask ourselves if it is time to go for imaging.

Xrays are not good for Cowden’s Syndrome. Radiation can send our sensitive cells into a tailspin. And the alternative – MRIs, are taxing – on everyone. But how long do you wait for a pain to go away when you have a syndrome that provokes tumor growth? How do you know what is the right time?

We scheduled the summer appointments. I was hoping to wait until then for all the check ups and tests.

Somehow, I suspect we will have to see someone a bit sooner.

But, I am stalling. Maybe the happiness will cure it.

Maybe swim season – her first ever competitive sport she ADORES – will straighten it out.

Maybe.. just maybe… we won’t have to add one more confused doctor to the list of clueless professionals who don’t know how to help us anyway.

Maybe… her blood results from Dr. Elice will come in this week, and maybe there will be an answer or two.

Maybe…

Maybe I will just go fill up my wine glass again.

No more “Toxic” environments

Published on April 7, 2013April 7, 2013 by beatingcowdens2 Comments

Almost a year ago – in June of 2012 – my husband was introduced to Isagenix, a nutritional program designed to help him shed some unwanted pounds and help him feel better.

You see it had only been a few months since his wife and daughter were diagnosed with Cowden’s Syndrome. Meghan had had knee surgery (her 4th) in February of 2012. I had my mastectomy, with the subsequent DCIS diagnosis, in March, and a hysterectomy in May. By June the stress eating was evident as he just didn’t feel well. We all needed his energy level to stay high. There was certainly no time for our anchor in the storm to get sick or run down.

So, with the guidance of a friend – an Isagenix consumer and “pro” herself, we got him started on a 30 day program designed to help cleanse his body of unwanted toxins. The thirty day program was a breeze for him. He is one of the most determined people I know when he puts his mind to it. It wasn’t long into those 30 days when he started finishing the extra vegetables at dinner, and choosing water over soda. He just FELT better.

The information below is from the Isagenix website.

http://www.isagenix.com/us/en/cleanse_overview.html

Nutritional Cleansing unlocks the miracle of the human body

Nutritional Cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:

Accelerate the removal of impurities from the body.
Nourish the body with vital nutrients to rapidly revive health.

A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities. Many people notice an ability to reach and maintain their ideal weight.

So when the thirty days were up, he chose to continue on a maintenance program. He uses the Isagenix for one or two meals a day, and snacks. It fits in with the “on the go” lifestyle of a NYC employee.

And, as he sees fit – he opts to do a “cleanse day” where he drinks a power packed vitamin supplement and lots of water. He eats very little food. And he always feels better when he is done. He knows now that toxins build up in the body, and he knows when its time to let them go.

10 months later he is down a solid 35 pounds and countless inches. No fluctuation greater than about 3 pounds. It is gone for good. The future is wide open, because as soon as his schooling is over – the exercising will begin again, and the remaining 15 pounds he looks to lose I am confident will melt away.

So how does all this have anything to do with “Beating Cowden’s?”

Here’s how I see it.

I haven’t used the Isagenix program, because I have not had a need to lose weight. But, I have learned so much from reading and watching.

Essential to the program is the release of toxins.

This, I know a lot about from being Meghan’s mom. From a young age it was evident toxins were difficult for her body to process. She seemed to hold onto things, food dyes, additives, “extras” in everything she ate. Nothing seemed to agree with her. An almost exclusively organic diet became essential.

We used Epsom Salt baths in the younger years to help clean out what her body couldn’t get rid of.

I learned about biochemisty, and methylation. I learned about Vitamin B12 and its ability to help her get rid of toxins.

So, over the last few weeks and months, when Meghan’s pain level has gotten progressively higher again, it was time for me to reevaluate.

Looking closely at her diet, there wasn’t much to clean up.

I have Dr. Elice looking closely at her blood. 28 vials this week!

But, it occurred to me that stress – life experiences – could be equally toxic. So I started to wonder if the stressful situations in our life were causing a decline in Meghan’s overall health.

This week we changed churches and schools.

I haven’t heard her laugh like this in months.

There is a spark to her smile, and a hope in her eyes.

Her hip still hurts. There is a knot in the side. There are aches and pains – but somehow… she seems just a little less toxic.

Felix is taking the Isagenix – but we have all benefited.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html# (Message me if you want to know more!)

SHE Who Never Gives Up!

Published on April 4, 2013April 4, 2013 by beatingcowdensLeave a comment

There is a card on my desk from a dear old friend.

It says, “She Who Never Gives Up”

I was quite flattered to receive it, as I did, and still do – perceive it as quite the compliment.

However there are some definite dangers to being, “She Who Never Gives Up.”

SHE feels the STRESS of life very deeply, and STRESS doesn’t go well with chronic illness.

SHE fights for what is right – in a world that doesn’t always give a crap.

SHE persists until people pay attention, even when they don’t want to.

SHE advocates without ceasing for the needs of her child.

SHE finds it unacceptable when her child is placed in stressful situations unnecessarily.

SHE plays a doctor, a lawyer, a researcher, and a teacher – all in real life.

When people don’t do the right thing, SHE reminds them.

SHE doesn’t quit- ever.

Some people find that SHE is annoying – a real pest.

Some people wish SHE would just go away.

Some people would like it if SHE expected a little less from them.

Most people wish SHE didn’t expect them to do their job, and do it well.

SHE is not perfect, and never claimed to be.

SHE makes the best decisions she can- with what SHE has, where SHE is.

SHE tries to eliminate the stressors in her life, and simplify – although they keep cropping up.

SHE will continue to battle with all of her might – despite bone crushing fatigue and sometimes against all odds – until her little girl can lose some of her unnecessary stressors.

Cowden’s Syndrome, and all its battles bring enough – the rest of the STRESSFUL situations are officially uninvited into our lives.

SHE will rest when her little girl finds both her inner AND outer smile.

“She Who Never Gives Up.”

Thanks my friend, for the vote of confidence. You will never know how much it has meant.

The Day Our World Changed…

Published on April 1, 2013April 2, 2013 by beatingcowdens8 Comments

Our world changed one July day…

It was the summer of 2005 – I was the mother of an almost 2 year old. That is when the world started over, and everything began again.

At the time, she received Early Intervention Services for OT and Speech.

Our house was a busy place.

The therapists were lovely, and my babysitter was a delight. The therapists often came in and out during my work day.

They left me notes, and I caught up with the babysitter – sure that I was doing everything I could.

Then the speech therapist started coming at night. She wanted to see me more. She wanted to talk to me.

“I think you should consider food allergies,” was how she gently began the conversation.

“Meghan doesn’t have any allergies,” I replied. I had dutifully, as the pediatrician instructed, introduced foods one at a time every few days looking for any hives. That is what I knew to be allergies. So now I was sure she had none- although her face was bright red and her belly distended several times its natural size.

“Look into a gluten free diet,” I was gently prodded.

And I resisted. Every step of the way.

Finally I read the book “Children with Starving Brains” by Jacquelyn McCandless. Maybe… just maybe…

“Go and see this DAN! (Defeat Autism Now) doctor, just give him a try…” prodded the speech therapist.

“You think MY kid is on the autistic spectrum?? No way. She looks right at me when she… doesn’t say a word. And she …” Well I finished the thought without speaking. It went something like – ‘she spins around this house like a top – a complete whirlwind. She doesn’t play, stack, or interact with any toy. She cries all the time. She leans over the side of the couch because her belly hurts. She doesn’t speak at all. She doesn’t behave like any of my friends kids.”

My heart sank. I was an elementary school teacher with a Master’s Degree in Special Education. Could I have been blind to my own child’s issues?

Well, she is way too related to be autistic I told myself. But her sensory system is a mess. She can’t tolerate noises, or sand, or textures. She should be speaking. And why is her belly so big?

So I read, and I read. And I finished “Children with Starving Brains,” and I moved on to more. “Biological treatments for Autism and PDD,” “Healing the New Childhood Epidemics,” “Evidence of Harm…”

And slowly I was rocked to my core. There was a sense of gratitude for the speech therapist that had pushed just enough, and a sense of urgency for my child who I knew wasn’t autistic – yet… although there were some significant tendencies there.

So we took away milk. Honestly it happened by accident.

February 4, 2005 I was showering after my first full night’s sleep since she was born. I am not exaggerating one bit. And, as I tried to determine the cause it occurred to me we had run out of milk the day before. THAT WAS IT!

After enduring the on the floor tantrums, the crying, and the freak outs… we got rid of every dairy containing product in my house.

And, as her belly came down in size and softened up, there was this added bonus. She started to speak. I mean really speak. She went from non verbal to almost appropriate over the next 18 months. The constant antibiotics for ear infections that wouldn’t clear became a thing of the past.

But still… we were on the right road, but we weren’t there yet.

I introduced soy to supplement the milk loss, and dare I say things got worse. There was this bright red rash all over her face… and everywhere else. We quickly dropped the soy.

On to gluten. That was so tough. What a major life change. Ingredients tossed regularly. Gross food. Costs unimaginable. But we were getting somewhere. We were making major progress.

Then there was that day in early July 2005. I don’t know what set off the melt down to end all melt downs, but it was unsettling to my core. I could not soothe my child. She would not let me touch her. The screaming. The sobbing.

It was time.

I picked up the phone to look for one of those DAN! practitioners, and found that Dr. Elice in Long Island had availability that week.

Fortunately I had taped the melt down. Perhaps the best thing I ever did, because my husband was immediately on board. And its a good thing, because this venture wasn’t cheap. $1000 consult. $500 follow up, and $250 a visit after that.

I was ready. I am not sure if he met me with fear or admiration that first visit, but I presented him with a chronology of every medical document I had, tabbed, and noted. If I was going to spend that kind of money… I was going to be sure it was worth it.

Dr. Elice had been a pediatrician for 28 years before turning to DAN! He knew that something wasn’t right and something was happening to the children he cared for. So he set out on a journey to figure it out.

http://www.aimintegrativemedicine.com/team.html

Meghan was one of his very first patients, and over the last 7 years he has proved not to disappoint.

He has spent hours upon hours, listening to us, looking at lab work, getting to know Meghan, patiently explaining biochemistry, and trouble shooting her areas of greatest need first.

At the beginning we probably saw him once a month. That was back when there was a need for B-12 injections, and all sorts of lessons about metabolic pathways.

Now, he has his own office. A practice to stand behind his philosophy.

http://www.aimintegrativemedicine.com/index.html

Slowly it had become more of a 2 to 3 times a year visit. Our pancreatic enzymes that have saved so much GI distress, come from him. He used his brain. He treated what he saw. He thought outside the box. No need for a pancreatic biopsy – “Let’s just try.”

He is a far cut above those who believe to “First do no Harm.” He believes to first HELP them ALL.

We walked into his office today to familiar hugs. He has a new office since we first met. A new staff. He is helping COUNTLESS children.

Today he spoke to Meghan directly for at least the first 15 minutes we were there. Then he spoke to Felix and I. We spoke about her medications, and our concerns – although the list is so much shorter than it was 7 years ago.

He ordered lots of lab tests – to try to get to the bottom of a few things.

13 vials of blood today. We will try for the rest on Saturday. And a 24 hour urine test on the horizon.

He understands autism, and while I know many friends whose children are deeply affected, he knew that Meghan was not to be one of those kids. He knew that while she is metabolically similar, there were some significant differences. She never received a diagnosis anywhere on the spectrum of autism.

He also understands PTEN. He knows of PTEN Hamartoma Tumor Syndrome. He knows of its uncanny connection to many autistic children. He knows of its cancer risks, and its vascular issues.

And, knowing this, he will not accept Meghan’s fate as predetermined. He knows that I will continue to have her checked and scanned, but he intends to help us circumvent the inflammatory responses that will trigger a malignancy or an autoimmune response.

He will get all the lab tests. He will send them to me. We will strategize. There will be new supplements. Ones to help teach her body that it does not have to sit back and accept its fate as predetermined.

For us – he is the HOPE that we need. The balance in this rocky sea of medical storms.

He is unique in that he loves my daughter- as a grandpa more than a doctor. He is unique in the depth of his caring. He is unmatched in the extent of his love.

Almost seven years later, I shudder at where we could have been.

Today we are thankful for one of the good guys.

Thanks, Dr. Elice for working for our kids…

Ramblings and Random Thoughts

Published on March 28, 2013 by beatingcowdens1 Comment

I am not who I was before.

Before there was Felix.

Before there was Meghan.

Before there was Cowden’s Syndrome.

Before there was breast cancer.

I am just not who I was before.

But every change has been part of a process, a transformation that is still taking place.

Perhaps the biggest change has been in my attitude towards others.

I try to surround myself with positive people.

Knowing full well that we all have our moments.

I deliberately seek out tolerant people.

Tolerant of changes. Tolerant of others.

Life is short.

Judgement brings anger, hatred, contempt.

I have no time.

So one by one I have worked to let them go – the toxic ones.

And I cling tightly to the others.

But such transformations affect your whole self – your core.

When I was much younger I had ideas. I was sure I was right – all the time.

Not so much anymore.

Now, I am sure that I make mistakes.

I am sure that everyone I truly love does the best they can with what they have where they are.

I am sure that everyone hurts.

I am sure that everyone struggles.

I look with a softer heart.

I see things from the other point of view.

Once I might have said that I found others beliefs to be “wrong” or “immoral.”

Now, I respect that others have beliefs and feelings that deserve to be respected – just like mine.

Maybe its the Cowden’s.

Maybe its the stress, or the fatigue.

Maybe its just me – growing up.

I tend to stay out of politics, and I don’t really comment on religions other than my own.

But I know I was raised to love my neighbor.

I know I was raised not to judge.

Really in the end – I just think if we all loved each other as sisters and brothers…

… well maybe more things would make sense.

I am not who I was before-

I am a work in progress.

I am surviving.

I am beating cowdens one day at a time.

I am embracing lessons learned.

I am wiser and more tolerant than I ever hoped to be.

I fear this is the beginning of the end…

Published on March 25, 2013March 25, 2013 by beatingcowdens5 Comments

… of dance class that is.

It sounds so dramatic. I guess maybe its not such a big deal. But today it feels like one more thing on a list Cowden’s Syndrome has robbed her of.

Meghan was never going to be a performance dancer. She wasn’t going to do ballet for hours. But, for the last 3 years, she has taken one dance class a week.

First recital - 2011 — First recital – 2011

Hip Hop.

Not because she knows the music, but rather because they dance in sneakers – and that is better for her joints.

I can’t say enough good things about the studio. The owner is a compassionate, kind, professional, lovely woman who strives to make every child feel like a million bucks. She revels in their accomplishments. She celebrates every ability level. She truly loves children, and dance.

This place is the perfect fit for Meghan.

Her joints acted up in the fall. She missed a month before she could get it back together. No worries – no sweat.

A few weeks ago she twisted an ankle at dance. Xrays, a sprain. A week or two off.

Then there was the shoulder thing. Not dance related – but it still cost her some time.

And then tonight. I picked her up from class and her flushed face told the story before her teacher had to.

“She hurt her hand, but we don’t know how.”

I do.

EFF YOU COWDENS!

So, I took her home. There was a shower, and some ice. Nothing more than a light sprain I am sure. But her back hurt too. So we put her to bed very gently. And we spoke about maybe finding ways to increase swimming instead of maintaining dance.

The recital though is such a rush. She loves it. She loves being on stage – the energy. The celebration.

On stage - May 2012 — On stage – May 2012

Physical Therapy tomorrow morning. We will let Dr. Jill input her thoughts – although I already know them.

She is pretty good when she dances. She is a quick study. She has made so much progress. And she has some moves. (Those are NOT from me!)

She will ultimately get to decide. Although its probably for the best to back out now – before she really gets hurt. The final decision will be hers. So I say.

In reality the final decision has been made by Cowden’s Syndrome, and its ruthless attack on her joints and muscles, and connective tissue.

She is resting peacefully – for now. But I am cranky.

Things tend to work out as they should, but I am still waiting for this little girl…(young woman…AAAKK!) to catch a break…

Meghan Speaks Out!

Published on February 25, 2013 by beatingcowdens8 Comments

Maybe tonight I would have to call Meghan the “Guest Blogger.”

What you read below is her speech. She was asked to prepare something to read for her school for “Rare Disease Day” on Thursday. She is an excellent public speaker, and fights only a few “butterflies” before she speaks. She always makes me so proud. I wish I could be there!

The text of the speech was written by her. I typed it, and then she went back in and changed it again. I added the pictures… just for here – because I like to!

She will review the speech with her principal tomorrow, but I don’t expect many changes.

When did my baby grow up?

**********************************************************************************************************

Some of you, who know me, know me as Meghan Ortega. Or, maybe you know me as Meghan from 4^th grade, or Meghan from Mrs. Worsdale’s and Mrs. LaMonaca’s class.

You might, if you know me a little better, know me as Meghan who loves to read, and swim. You might know me as Meghan who loves dogs.

Maybe you know that I have 2 dogs that I love, and a mom who is a teacher and a dad who is an electrician.

Lucky, Meghan and Allie - My three girls — Lucky, Meghan and Allie – My three girls

But, until today, very few of you knew that I am Meghan Ortega and I suffer with a Rare Disease called Cowden’s Syndrome.

Until September of 2011 I didn’t know I had this Rare Disease. What I did know was that something was wrong and my body was far from that of a “normal” kid.

For as long as I can remember, every week of my life has included AT LEAST one doctor’s appointment, and lots of times even more.

You’ve all been to the doctor and you know it’s not fun. It involves waiting and waiting…and even more waiting. It also involves poking and prodding. For me, it often means being sent to more and more and more doctors…

My mom says when I was a baby I wasn’t really comfortable, and I cried all the time. I almost never slept, and wouldn’t drink my bottle.

When we talk about it now, we think my body knew I couldn’t handle dairy products, and dairy is in milk.

Mom also tells me that I started seeing lots of doctors when I was just a few weeks old. Soon there were doctors to check almost every part of my body.

I have had 9 surgeries. I remember having my gall bladder out before I turned 4. I also had a lipoma (a soft tissue tumor that people with Cowden’s Syndrome get.)

I had knee surgery 4 times for an AVM in my right knee. An AVM is a vascular malformation. It is also common in Cowden’s Syndrome. It feels very strange because it pulses like your heart beat. Every time I had that surgery the doctor thought I wouldn’t need another one. But they have already done 4, and they are not sure if the AVM will ever go away, so I will probably need more.

Because I am in pain so much, I get physical therapy in and out of school. My outside physical therapist, Dr. Jill told Mom that she should take me to see a geneticist. I didn’t really understand what that was, but we went because that is just what I do.

Dr.Pappas at NYU was really nice. He examined me and he talked to me and mom. When he was done he drew some blood. He said he was pretty sure of what I had, but we had to wait for the test results.

In September of 2011, just as I was starting 3^rd grade, we went back to his office and he told us that I have Cowden’s Syndrome. It means that my PTEN gene is broken. Your body is made up of all sorts of genes, but these are G-E-N-E-S, not J-E-A-N-S like the ones you wear. PTEN is the gene that keeps your body from growing tumors. Because mine is broken I get more growths, like the AVM, the lipoma, and the nodules on my thyroid that I have to have checked every 6 months.

As soon as I was diagnosed, the doctor talked to my mom and said she probably had Cowden’s too. He took her blood and a few weeks later she tested positive.

Because of the Cowden’s my mom had lots of tests done, and it explained a lot of things about the 17 surgeries she has had. On March 5^th it will be a year since she had surgery for breast cancer. She is just fine. She says that knowing she had Cowden’s helped her find it early. She says to everyone that my diagnosis saved her life.

When I am here at school I smile a lot. I don’t like to dwell on anything bad. We spend enough time with doctors so I try to enjoy my time with kids.

You would probably never know by looking at me, that I am in pain a lot. I take medicine every day that helps my joints hurt less than they used to, but still most days I have pain. It is hard for me to climb up the stairs, and play at recess, but I do it.

We first heard about “World Rare Disease Day” last year, but at the time we were a little too stunned to do anything about it.

This year I told my mom I wanted to do something to make people more aware of Cowden’s Syndrome and all rare diseases. I was not ready yet to do a fund raiser – I just wanted to get the word out that Rare Diseases like ours exist. There are over 7,000 of them!

I shared my idea with Mrs. Manfredi and she said I could give out the ribbons and information you received today. I was really excited.

“Hope it’s in our genes” is the motto of the Global Genes Project. They try to raise awareness and find cures for all rare diseases.

Today I think it’s important for you to know you can’t ever really judge someone by how they look on the outside. You never know what’s going on inside of them.

Be kind.

Be aware.

Rare Diseases are everywhere.

Thank you

** By Meghan – Age 9!

This one’s for you Mom – HAPPY SWEET 16!

Published on February 24, 2013February 24, 2013 by beatingcowdens2 Comments

This one’s for you Mom.

My Mom doesn’t have Cowden’s Syndrome. The tests confirmed that.

What she does have is strength, stamina, and courage unrivaled by most. She is a tough cookie. An inspiration with her determination. Not once throughout her life have I ever known her to give up.

Mom is a survivor.

Long before she was a breast cancer survivor, she was a survivor of life.

She survived a divorce, two jobs, and raising 2 kids alone – with the help of my grandparents.

She survived sleepless nights, and worry.

She battled for her kids- fought doctors, insurance companies and the like. And, she even battled with us on occasion… If you can imagine that!

Long before she was a breast cancer survivor, she was my Mom. And she taught some valuable lessons I still use today.

(My sister posted the other day that “Some days I open my mouth and my mother comes out!”)

These are her words coming out of me these days….

But God is good - all the time! — But God is good – all the time!

And….

I really think I am OK with this concept, but we all need a reminder sometimes!

When my Mom was diagnosed with breast cancer I was 23. I was scared. She might have been scared, but she attacked it with her “matter of fact” attitude that I think is what has gotten her so far.

She went for her first mastectomy on February 24th of 1997. She was just 48. The second mastectomy followed in April when cancer was found in the other breast. 6 months of chemo followed. 5 years of Tamoxifen followed that.

And she just kept right on going. Even though some days she felt like this…

Truth be told, maybe we all did. But I did what I could to help out with her, around the house, and with my little sister. I was really just amazed by her drive. But I think I still am.

Last year when I was scheduled for my mastectomy, the surgeon asked me who had been with my mother during hers. I told her my dad and I had. She said, “Well call mom and tell her its time to return the favor.”

I called her on the ride home and although I can’t imagine it was an easy call to take. She never flinched. She took the week off that I had the surgery (a HUGE compliment from someone who sparsely misses a day of work.) My recovery went so smoothly. And I had some of the best conversations of my life with Mom that week.

When my pathology returned DCIS, she was the first one I called. Neither of us were surprised. And, yet her reassuring words, that she knew I had “done the right thing,” gave me such peace.

Before Mom was diagnosed she dreaded turning 50. After all she had been through she embraced 50 with grace and charm, and a few years ago gave 60 a great big hug.

Mom's 64th birthday - and 4 generations of tough ladies! — Mom’s 64th birthday – and 4 generations of tough ladies!

This is a picture from her 64th birthday a few weeks ago.

My mom may not be like everyone else’s. She can be a tough lady. She hasn’t had an easy life. But she has a heart of gold. And I love her for who she is.

As I grow I realize everyone does the best they can with what they have where they are.

I am thankful – so thankful – for these last 16 years with my Mom. I am grateful she got to know my daughter. I look forward to having her around for a long time.

A mother bonds with all her children, and she is close with my sisters – differently than how we are close. That’s what makes each relationship special.

We share some things that can’t be put into words…

Just past the finish line. Aren't we "Pretty in Pink?" :-) — Just past the finish line. Aren’t we “Pretty in Pink?” 🙂

She will always be my friend. I hope she knows just how much she is loved.

Happy Start to your 16th year - CANCER FREE! — Happy Start to your 16th year – CANCER FREE!

Priceless!

Published on February 19, 2013February 19, 2013 by beatingcowdens4 Comments

Waking up before the rest of my family on a vacation day – 2 cups of caffeine.

Filling the car with gas- $50.

Traveling through the Brooklyn Battery Tunnel $13 roundtrip.

Parking for 4 hours – $25.

Two doctor Copays $20 each.

Trip across the Verazanno Bridge… about $6 with my EZpass.

But, the news from the dermatologist that I can stretch the visits a whole year, combined with the news from the breast surgeon that “everything looks great and I will see you in 6 months!”

ABSOLUTELY PRICELESS!

So we cross small hurdles gleefully.

We had 7 appointments carefully scheduled for this week to avoid time off from work/school. Three doctors apparently realized last week they have kids at home and cancelled. So this concise week of appointments will stretch a bit, but I have begun scheduling the 11 doctors and 4 scans I can remember that are due in June/July.

I will do everything in my power to consolidate them.

Cowden’s Syndrome WILL NOT run our lives.

We are actively preparing for RARE DISEASE DAY…. (FEBRUARY 28th – Get your denim ready!)

Until Friday when we see the vascular surgeon about that pesky AVM…