Champions of HOPE

Published on July 8, 2014July 8, 2014 by beatingcowdensLeave a comment

It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011. Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!” That play on words stuck with her, and the ribbon gave her a good deal of connection at a time when we weren’t sure if we’d ever connect with another soul with “Cowden’s Syndrome.” The connection with the RARE Community at large carried us through those earliest days.

The end of 2011 and well, 2012, and… well, you get the idea… held some tumultuous times for our family.

Adjusting to the diagnosis was not easy. Finding balance within the labels, and the risks, and the screenings, and the surgeries, and the appointments was (and sometimes still is) a struggle. In the months when the diagnosis was at its newest, Meghan’s thyroid was called into question several times. We discovered nodules we never knew were there and learned the early risks of thyroid cancer were real, and ever-present.

She soon underwent the most horrendous of what would be 4 thyroid biopsies over the next 2 years. Scarred physically and emotionally, we began to wonder about this beast we were up against.

In February of 2012 Meghan had her 4th knee surgery for an AVM (arteriovenous malformation) in her right knee. Now convinced it’s stubborness could be credited to Cowden’s Syndrome, the fight to control it’s growth took on a whole new meaning, and we were referred for consultation to Boston Children’s Hospital.

While we balanced the screenings for Meghan, I was sent to my own set of initial screenings. Being 38 and newly diagnosed, I was in the battle full on, and I had had no idea. All the imminent cancer risks associated with Cowden’s Syndrome – except for the thyroid which often comes earlier – seem to peak right around 40. No stranger to doctors, I was trying to figure out how the diagnosis helped explain the roadmap that was my own medical history.

In March of 2012, I underwent what was to be a “prophylactic bilateral mastectomy,” to battle the 85% breast cancer risk I had with the PTEN mutation that caused Cowden’s Syndrome, and my own medical history which had already seen 7 increasingly suspicious breast biopsies. Seven days later, while having my drains removed, my husband and daughter sat in the room as the doctor announce it was a “good thing we moved when we did.” My left breast, the one that had never seen a scalpel, had 1 centimeter of DCIS, close to the nipple and clear of the chest wall. I had breast cancer. They found it by accident. My aggressive, intelligent surgeon, who I met because of my diagnosis, and really BECAUSE of my daughter had saved my life. I needed no treatment.

I left the room that day holding the two people I love more than anything. Unaware of the plans clearly in place for us, I was so filled with gratitude, and so in awe of the reality that if I had never had Meghan, I would have likely never known. And the surgeon’s words, “If we had waited till July like you had wanted, you would have been in a fight for your life,” still ring in my ears. Sometimes you have to stop the “what ifs?” and just say “thank you.”

Ten weeks later I was back in the hospital for a complete hysterectomy. A suspicious uterine polyp, enlarged ovaries, and Cowden’s Syndrome combined again for too great of a risk, and the recommendation was for surgery and quickly.

The shock on my body, the trauma to my family at this point was intense.

I had begun to scour the internet looking for places to go. I found http://www.PTENworld.com and its dynamic young moderator, a Cowden’s patient for many years. I found Facebook, and a beautiful support network there. I found a yahoo group, and a mom there who has consistently gone above and beyond for me, simply out of goodness. Finally, there were real people I could talk to.

One day that Spring I received a Pandora necklace with a pink ribbons on it. After years of advocating for my mother, a bilateral breast cancer survivor, holding the pink ribbons that belonged to me felt strange. Yet, so did the new boobs, smaller, but perkier than the old ones, and all the clothes I was learning no longer would fit quite right. So, I took comfort in that necklace and I wore it a lot.

And one day my very obsevant girl, who was 8 at the time, a few months shy of 9, asked me “What stands for me? The gold ribbon is for childhood cancer, the pink ribbon is for breast cancer, the puzzle piece is for autism. What about me? What about people like me who are dealing with this (Rare disease) every day? I NEED something mom. Not to have a thing, but for my identity.”

Stunned, as usual. I realized I had begun to heal myself, to seek comfort for myself, but I was leaving her behind.

So I happened to be retelling the story at lunch. And my teacher friend, whose husband is a jeweler, and who has a son with autism, really “got it” on so many levels. She told me she’d talk to her husband and see what was around. So I gave her a denim ribbon sticker from the Global Genes Project, and they were on a hunt. Which turned up nothing. There seemed to be no piece of jewelry worldwide to symbolize those with Rare Genetic Disorders. And, with there being over 7,000 RARE dieseases, accounting for almost 10% of the population, to us this was silly.

So my friend’s husband offered to make one. For Meghan. Because if she wanted a piece for her “identity” she should have one. So he did. It took months. And it was perfect. Absolutely perfect. And he was so generous in the donation of his time, all to light up my girl’s world.

Typical Meghan, no less that 5 minutes after she put it on, she started with, “Wouldn’t it be great Mom, if these were available all over the world, and then we could see them when we went places, and we would know the people who have, or love people with RARE diseases?’ And the conversation continued to include asking me to reach out to The Global Genes Project to try and make it a reality.

Well two years have gone by. Felix and I each wear one too. Only 3 ever made. Until recently.

There have been lots of EMails exchanged. Lots of conversations. Lots of people. Ultimately they did decide to have the necklace made, and while the decision thrilled me, I would be lying if I said that I wasn’t disappointed that they couldn’t use our friend, the jeweler. But, business decisions are what they are, and this one was not in my control. And, despite that disappointment, Meghan’s dream, her vision, is becoming reality. We received 2 samples this week, and a “THANK YOU” from the team at Global Genes! The necklaces will be on sale through http://www.globalgenes.org in the fall!

Two years have gone by.

I have developed deeper, closer “long distance” relationships with some “kindred spirits” in the Cowden’s Community – globally!

My girl has some of her own friends with Cowden’s now, spread across the world. She will be 11 soon, and is quite the young lady. She understands life on levels deeper than she should. Most impressively she understands that despite our struggles, there are many in the world who struggle in heart, mind, body, and soul. She knows that “Everyone has SOMETHING!”

This past year she organized an assembly at our school. She worked with Student Council to arrange an evening fund raiser. She partnered with a friend in her own class who has a RARE Disease. We sold T-Shirts. We received intense support from faculty, and parents and students. Every child got a denim ribbon to wear for RARE Disease Day. We sent thousands of dollars to The Global Genes Project.

She has already begun to plan for next year, and wants a much bigger fund raiser. “At a place Mom.” We can really get the word out and raise money. For The Global Genes Project http://globalgenes.org/, and for the newly founded PTEN Hamartoma Tumor Syndrome Foundation http://www.ptenfoundation.org/, another organization close to our hearts.

She has a mind that never stops. She has the heart and voice of an advocate. And this year, she was nominated for the TEEN Advocacy Award at The Global Genes Project. (If you scroll down, the teens are close to the bottom.)

http://globalgenes.org/2014-rare-champions-of-hope-nominees/

Champions of HOPE indeed. So proud of her. So proud to see her name with all the others who have decided to “Do Something.”

“HOPE it’s in our Genes!”

We are BEATINGCOWDENS!

State of Mind – Part 2

Published on May 5, 2014 by beatingcowdens1 Comment

There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time.

There was a time when the little superheroes, the miracles walking around us, and the significance of it all may have gotten past Meghan.

She is older now. More weathered at 10 than she should be. She misses nothing. And to a child who has heard the word “cancer” spoken to her, around her, and beside her, her entire young life, she is acutely aware of its presence in the world.

With Cowden’s Syndrome comes cancer conversations. Is a little fancier when you describe a “PTEN mutation, as causing benign and malignant tumor growth,” but the meaning is the same.

Anyone can get cancer. At any time. And certainly it’s almost unlikely that any of the children we saw today have our “Cowden’s Syndrome”

However since Cowden’s Syndrome, and cancer become so closely married – it is hard to consider one without the other, and days like today are especially draining on both of us.

We left the house at 8AM, and sat in traffic before arriving at our destination, (a route Google Maps tells me is 20.5 miles)at 9:40 – 10 minutes late for our appointment. We then sat a good deal more, until almost 10:40, with plenty (read way too much) time to observe.

The facility is clean, and neat and tries to be festive. Children were celebrating Cinco de Mao among chemo pumps, bald heads and IVs. I watch and try to think nothing. Because it is fortunately IMPOSSIBLE for me to know how they feel, or what they are going through. But, an adjacent conversation involving a thin, beautiful, bald 5th grade girl and her dress for the dance was difficult to avoid completely.

We were met with the familiar and friendly surgeon who wasted little time before examining Meghan’s neck. He felt and thought and asked questions. “Has she been sick, any fever, trouble eating…?

“No, no, no.”

“Well, I don’t think there is a problem. I think it is probably OK. But just to be sure we’ll have you come back in 2 weeks. If it’s not gone we will scan it then. Oh, and you should see why her salivary gland is enlarged. It’s not just the lymph node.”

“With whom would I check that? Because for 6 months I have been talking about incessant throat clearing and all I get are theories. The last ENT told me to see a GI. Have you ever heard them laugh when you bring in a 5 foot 2 100 pound 10-year-old? I have. Any suggestions?”

Silence.

“Ok then, we will get you set up with an appointment 2 weeks from today.”

I had come in hoping for an all clear, or perhaps a 3 month review. 2 weeks had its pros and cons, and Meghan and I weighed them, silently and independently as we headed back to the elevator.

We arrived home at 12:20. Four and a half hours. Insanity.

This afternoon I was stressed. Over nonsense. When I am anxious I have an incredible need to control nonsense. I have been stressed a lot. I need a new outlet. This one is making me not so much fun to be around.

I heard myself today. My tone, my body language. All so negative. Not like me, and not the person I strive to be.

I was brought back on track by my own superhero. Only the strongest can share what’s on their mind and in their heart. That’s why I love her so.

Wise beyond her years. Worried about things she should never even have to think about. Yet still able to find the simple beauty in the world around her.

I took a “time out” tonight to regroup. She nestled up with Daddy. Warms my heart to see her in my bed.

My nighttime prayers include the many who had their own medical adventures today, and my girl. That she may know the joys of childhood… and for me, that I will remember to enjoy watching before they pass me by.

Happy Birthday Dad

Published on April 17, 2014April 17, 2014 by beatingcowdens8 Comments

** I rarely go off the topic of Cowden’s Syndrome, but this is just so necessary. Tomorrow April 18, 2014 my Dad would have been 66.**

Dear Dad,

It’s hard to imagine a year has gone by since you sat at my dining room table. We shared pizza, and red wine, and ice cream cake. And you, who had eaten in some of the most gourmet restaurants around, were so gracious, and thrilled to enjoy a simple dinner with Meghan and Felix and I in honor of your birthday.

You even tolerated coffee from my Keurig with a warm smile.

I still remember that night as if it was yesterday.

"Don't take out the knife!" — “Don’t take out the knife!”

And here I sit a year later… in awe of all that has gone on. Stunned that you aren’t here to celebrate.

Thinking back your year is proof positive that we need to live each moment with the knowledge there is no guarantee of tomorrow.

But, you knew that. You learned that lesson many years ago as a young Marine in the jungles of Vietnam. Then, you lived it. And you learned, and you grew, and you learned some more. But, you lived each day without malice in your heart, and with the never ending desire to do the best you could with what you had where you were.

We didn’t always have it quite right, Dad. There were years where you weren’t around too much, and I missed you. And I’ll admit to even spending some of those years a bit angry. But, I grew up.

And Mom, she did the right thing. I got to work through it all, and come out better and closer to you in the end. Heck. I made out like a bandit, because when Mom married Ken, I got to enjoy all the benefits of two Dads. Not a replacement – either one, but two! What a lucky girl…

When you came back to Staten Island a few years ago I was thrilled. Now, a mile away from my house, I got to see you more than I even had before. You got to see Meghan. And I watched a relationship blossom between you.

You were there for her dance recitals, and some swim meets. You watched her on days off from school. You taught her chess.

You got some time to get to know her during years when life had kept us apart. I felt so much closure. So much love.

You smiled all the time when you were with her, and that smile is what she carries with her each day even now.

Even when we didn’t see each other, we spoke. A lot. I loved bouncing ideas off of you, and even when we didn’t agree, I loved hearing your point of view. You always HEARD me. You never JUDGED me. You listened intently to mine and Meghan’s medical issues, and I valued your perspective. I looked forward to talking to you. Especially on the cell phone (hands free of course!) on my way home from Whole Foods. Your voice always gave me energy after a long night.

Except for that one night. When I called you on a Friday from the road back from Whole Foods, and you told me you were in ICU. Stunned, I told you I’d see you in the morning. You said I didn’t “have” to come.

We spent a lot of time together those days as they ran test after test. You were getting edgy. A caged bird.

I took you home after the answers stayed sketchy. But I was worried.

You who could walk miles. You who could work countless hours. You who was always busy. You were tired.

Your skin told the tale of jaundice. Your eyes were tired.

Meghan asked and asked to see you. You put her off. You wanted to feel better.

Then on Halloween we got a 5 minute visit…

And even though she was worried about you, that hug carried her for quite some time.

There were appointments. Back and forth. I was so grateful to be able to take you. And I was so thankful for the time we had – to talk about everything and anything.

We had some easy conversations, and we had some of the hardest conversations I will ever have in my life. But I am grateful for every one of them.

You see I always loved you – but not until those last months did I really get to know you.

“I always wanted to exclude you from my pain, never my love. But the two became one in the same.”

And in that moment there was peace. You spoke what I knew. In very few words you elaborated on the Marine who returned from Vietnam, forever changed. You told me about the hurt, and the heartache, and the fear. I learned later the scope of the losses you suffered through, and the horrors you experienced. No wonder. No wonder at all.

The months got all garbled up. There was Shane, in to stay for a while, at exactly the right time. There was Lisa, at the ready to drive anywhere we needed to be. your “team” converged, got our acts together, discovered our skill sets and became unstoppable.

Road Trips to Columbia Presbyterian. Gut wrenching diagnostic testing. Your strength – surreal. Your focus – laser sharp.

You were back to survival mode. A Marine in the jungle. We were in awe.

That last week at the VA was torture, and therapy all at the same time. You had made your wishes clear. We knew the mission. We just didn’t like it one bit.

And when the angels grabbed hold of you on December 4th, and we knew that you were finally able to rest, there was a painful peace among us.

The days of your funeral were surreal.

The days after it just as intense. So many people had to be notified. Somewhere in your 6,000 contacts we found the strength to reach out to those who loved you so.

Perhaps if I had one wish, one regret- it would be that you didn’t know how much you were loved. By your family, and by those whose lives you touched on a daily basis.

You changed people. Your impact was intense.

You suffered too much Dad, with the physical, and emotional traumas of a war fought as a young man. For 45 years you bore burdens too intense for the strongest to process. You were tired.

You told me once about Cowden’s Syndrome to never let it define Meghan and I. You told me to listen to my heart and my gut, just as much, if not more than I listened to the doctors. No worries Dad. I haven’t forgotten.

I am sad that the cancer reached up and snatched you away – with no warning. I am at least in that way grateful for the warning system that is Cowden’s Syndrome. But, don’t worry Dad… I will never forget.

You know in the months after you died I reached out to your Marines. The few you spoke a little about, and the ones I had never heard of before. There were photos, and then names, and then long conversations. They, each of them a gentleman, called me upon hearing of your death. With some I laughed. With some I cried. With all I felt a bond. They were also your brothers, each one. I learned the meaning of “Semper Fi” in those conversations. More than 45 years later they wanted to know what they could do. And they meant it.

You would be so proud to know. You are remembered. Not as a saint, but as a good man. A man who made mistakes, and owned up to them. A man who loved, deeply. A man who desired to make the world better. A man who taught by living. A man who saw beauty through his camera lens.

You made a difference; to your Marine Brothers, to your parents, to your children, to your grandchildren, to your siblings, to your nieces and nephews, to the friends form all walks of life who loved you so, to the people you worked for, to the people you worked with, and to the people who worked for you.

We played music the day before you died. You smiled. We laughed. That is the spirit I hold close in my heart – even through my tears.

Happy Birthday in Heaven. Give Angel Meghan a kiss for me.

Semper Fi Daddy. Always faithful. Until we meet again.

All my love,

Lori

Today

Published on March 19, 2014 by beatingcowdens1 Comment

In the spirit of one day at a time… today she feels well.

Today homework is already done.

Today her stress level is low.

Today she swims in the water like the fish she longs to be.

Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.

Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.

Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.

No one can figure out why the drug works for her, but it does. And I am grateful, but scared all at the same time. The list of medicine grows. The knowledge of Cowden’s Syndrome remains spotty at best.

We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….

One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up. Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.

Sometimes I feel like with all the doctors we see, there is still no one minding the store. We travel between specialists, between symptoms, between surgery and recovery.

The blood for the thyroid won’t be drawn for a month. She slept 14 hours Friday night and another 12 Saturday night. No major plans for us for a while.

The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.

Sometimes I like to play mind games, and forget about Cowden’s all together. I daydream a bit…

And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be. Like that ‘ever changing puzzle” my Dad used to tell me about.

And I think of my friends and family. They are contending with diagnoses new and old. None of them fun. I would never say to them that experience shapes who we are. That is a personal belief that the wrong person just might deck me for.

Especially on my heart is my internet friend from Australia. Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.

Today. Today my girl feels good.

Today I will do as I have been taught and let tomorrow worry about itself.

Today we are BEATINGCOWDENS!

Disconnected

Published on December 19, 2013December 19, 2013 by beatingcowdens1 Comment

Breathe in… Breathe out… Breathe in…

I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down. Now.

I know that’s wrong for any number of reasons, but I have always been candid here.

In the 10 days since we have buried my father there has been a whirlwind of papers and errands. There have been things to organize and sort. There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.

And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.

This year the reasons are kind of obvious. I am starting to think its likely to get worse before it gets anywhere close to better.

Then my husband reminded me about last year. He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU. He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.

It was right after Christmas last year that we had the “Santa” talk with my girl. My one and only.

So, I guess I knew all along this would be a year I had to look a bit harder for the magic. We looked hard in Disney in August. And we found it.

But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live. That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma. I heard the Christmas tunes. I helped with the ornaments. And I felt like I was in a bad movie.

Meghan had suffered with migraine headaches most of October and November as my father was sick. An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.

I couldn’t get the cards together this year. I just couldn’t do it. Maybe some time around Valentine’s Day I will feel up to a greeting. I ordered the food for Christmas dinner too. Yep, its better for everyone anyway, as I am a rotten cook. And the family is bringing dessert. I bought gifts for the children. Although even those were mostly purchased online. And so many of the adults are getting gift cards to their favorite stores.

Last weekend Dad’s mom was in the hospital. Today she is back at her home, but she is worn out.

And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger. Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus, it will all be ok. Somehow.

So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control. After the doctor examined her, and her neck, he asked for a tape measure. He measured “significant” growth since June in one of the right side nodules. “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”

My heart skipped a beat.

“Where did you get that necklace Meghan?” asked the nurse.

“My Grandpa Tom gave it to me. He died this month from pancreatic cancer.”

Sometimes silence really is deafening.

“It may take a few days to get it scheduled Mrs. Ortega. You know, with the holidays…”

Yep. I know.

I wish cancer got cancer and died!

Published on October 26, 2013 by beatingcowdens1 Comment

Today was rotten.

And it is Saturday. I hate it when Saturday is rotten.

And I am tired. And worried. And my heart is heavy.

I guess that makes me in the same boat as most people.

And then there was a text this afternoon.

And just like that breast cancer claimed another life. Just like that two women had no mother, and a husband lost his wife.

To the best of my knowledge she didn’t have Cowden’s or BRCA, or any other genetic cause for her cancer. But then again, neither do most people. And I was reminded again that maybe having Cowden’s makes me a little luckier.

I knew to get the beast before it got me.

She was not old enough to die. But, then again, who is?

And even when I held her hands in June and looked her square in the eye, and told her to fight with all her might – I knew. She knew too. Deep in that place where the thoughts are that you just don’t want to think, or feel, or believe. We both knew that this is how it would end.

Cancer is stupid, and mean and nasty, and ugly and awful. It’s a big bully and I really hate bullies.

I’m pretty much over this “Breast Cancer Awareness” thing.

As a matter of fact I am over the whole cancer thing altogether.

Ready for a cure.

Broken hearts. Lives crushed. Too many wakes and funerals. Too many people gone too soon.

My heart hurts. My head hurts. And I think some part of me feels guilty.

Guilty for having a “head start.” Guilty for having the support to push me through the double mastectomy.

This is the first person in my life to die of breast cancer since my diagnosis. I am sadly sure she won’t be the last.

And, like so many things that have changed since March 5, 2012 – this one hurts differently. Worse.

Cancer really just sucks.

STUPID CANCER show!

Published on October 21, 2013 by beatingcowdens3 Comments

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.”

https://www.facebook.com/stupidcancer

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.

http://www.blogtalkradio.com/stupidcancershow/2013/10/22/stupid-environment

(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.”

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.

Keeping It Together

Published on September 2, 2013September 2, 2013 by beatingcowdensLeave a comment

When it’s all about to fall apart, what is a mother to do to hold it all together?

Anything she possibly can!

Months ago I wrote a blog about how Cowden’s Syndrome changed… my phone. And its true. I could not manage the appointments and chronic craziness without Siri, my BFF.

And, when the navigation in my car quits, which it often does, Siri is the one to get me home.

So how did Cowden’s Syndrome change my entire way of eating?

After our diagnoses in the fall of 2011, my dear husband ate his way through his stress. I can’t blame him. Imminent cancer risks for your young daughter. Thyroid nodules galore. Biopsies every 6 months. Vascular problems. Pain. A wife facing a mastectomy, and subsequently a cancer diagnosis, and a hysterectomy. Tumors on her spleen… and the list goes on.

By November of 2011 he was here.

I had known him since 1997 and had seen his weight fluctuate from attempt after attempt to get the stress eating in check. Being a big attractive guy, he was able to disguise his weight very well for most of the “ups.” But I knew this level of yo-yo dieting was not good for him. I also knew we needed him, strong and by our sides.

My husband is soft-spoken, and talks to very few people by his own choosing. I had to get his permission before I hit “publish” on this one. But if you listen carefully when he does talk, he always has valuable advice and a story to tell.

Some time over the winter of 2011, into early 2012… maybe it was right after my double mastectomy in March of 2012, he had a revelation. While sitting uncomfortably on the couch one night, he tried to move a pillow out of his way. Only to realize it was his waist.

A month after that during a physical he left the doctor’s office with prescriptions for his high triglycerides, his high blood pressure and his high cholesterol. Darned if I was going to put MORE junk in his body we went to a trusted cardiologist. He told Felix there was nothing wrong with him that losing 50 pounds wouldn’t fix. He gave him a script for a prescription strength fish oil. We tossed the other scripts in the trash.

That was the moment of truth, and we went on a hunt together for what would help.

Fortune, and opportunity, and the grace of God had placed a new friend in our lives that year. She was a blessing to Meghan, but subsequently to all of us. She had begun her Isagenix journey that year and was seeing incredible success.

For years I knew that diet and nutrition were the key to so many things. Meghan never even spoke until we removed gluten, dairy and soy from her diet at the age of 2. We saw her developmental delays resolve as her stomach quieted. We moved mountains to feed this kid right, and provide her with nutritional supplementation of only the highest quality. As I listened to my new friend describe Isagenix, I heard words I already knew to be true. This company had everything I knew about nutrition – ready to help my husband.

So we started him on the “30 Day Cleansing and Fat Burning System.” Within days he reported feeling better. He was expressing clarity of mind. He had energy. He had less of a desire to eat junk. His palate was changing and he was fighting me for the rest of the vegetables at dinner.

I was amazed, grateful, and impressed. But not surprised. It all made sense. Put maple syrup in your car’s engine and you ruin it. Run it of pure gasoline, change the oil regularly, and you are golden. Why would we treat our bodies any less efficiently?

Over the next 11 months I dutifully adjusted his “autoship” so that the products would arrive at our home ever 29 days. He modified the portions of the program that work for him, and he woke up in August on his 40th birthday 50 pounds lighter than he had been over 18 months before.

For the first time, in the 17 years I have known him, the weight is GONE. RELEASED – not lost. It will NOT be found again.

He tells me this is not a “diet” but a lifestyle change. He will not start his morning without his shake and his ionix vitamin. He will not go more than 3 weeks without a “nutritional cleanse” that is the lifeblood of why this works. (Nutritional Cleansing releases toxins from the body. Without that release of toxins your body begins to hold onto the weight again.)

http://www.isagenix.com/us/en/areyoutoxic.dhtml

After all of this regulating the autoship, and paying monthly for high quality nutrition, some time in May I looked up and realized I was missing a HUGE piece of this.

First of all, I ordered myself some meal bars, a few shakes, and some E+shots. My body, stressed to the max, even though it was thin – needed nutrition badly. I was able to eliminate my diet soda habit – something I had tried to do for years with no success. I can not stomach dyes and junk foods I used to live on. My body just WANTS the real stuff.

Then they came out with a shake that would meet Meghan’s needs.

And then we were three consuming Isagenix, and feeling better each day. What an amazing thing to listen to your ten-year old TELL you when she NEEDS a shake. I am convinced the only reason she can swim the way she does is because she refuels with Isagenix.

So, what does a family benefiting from a product do?

They talk. Finally. After all that I finally got around to telling people of our success. Of the quality of these products. Of the positive life changes.

And people wanted to know more. So I learned more. And I helped them. And they are getting healthy too. What a rewarding feeling.

I have had to contend with the negative folks along the way. The ones who whisper, “That’s a multilevel marketing company..” as if that made it evil?

Yes. Isagenix is a multilevel marketing company. There is no mystery, And no one tried to hide it. There is no one breathing down your neck to sell or share the products, and you are free to purchase and use for as long as you like. We did it for 11 months. But if you share (which is what I learned to do as a small child in school – simply share) and you help others, you get rewarded for that.

Then I signed someone up. And they were happy. And I felt good. And then another, and another.

And before I knew it there was this Visa card on my desk with money on it. Money I had earned from telling our story. Money I can use to do whatever I’d like.

It got easier and easier.

You see people say to me, as I had said to my friend, “I am not a sales person.” Me either. I am sure I couldn’t sell knives, or vacuums, or other random products. What I CAN do is tell the truth. I do it well. My candid honesty ties into my “take me or leave me” philosophy. I have no time for nonsense or drama in my life.

But now I tell people, quite honestly, that I don’t pay for my Isagenix. We eat MORE products than ever, and we eat them for FREE. Now in my 8 years of buying nutritious food, THIS is a new concept.

And I like it.

Isagenix has changed all of our lives in different ways. And we have all benefited. Felix needs to be strong for Meghan and I. And my Cowden’s Syndrome buddy and I, with our tendency towards cancer, tumor growth and a whole host of other problems, need to give our bodies pure nutrition so we have the strength to stay healthy.

We are now, and forever an Isagenix family.

It’s one of the strategies we use to keep it all together.

We can help you too!

I don’t know anything about “Cowden’s Syndrome…”

Published on July 30, 2013July 30, 2013 by beatingcowdens7 Comments

After last night’s late night strep diagnosis, there was no way I could send her to Bible School this morning.

But, I had an appointment with the breast surgeon – a routine follow-up that I knew would take 5 minutes.

(That is why I had scheduled it July 16th when I was ALREADY IN the city- but last-minute doctor vacations are just one of the many inconveniences of life these days.)

I knew it would take 5 minutes – after I drove through an hour and a half of traffic, parked the car, walked a half mile, and waited to be called.

Truth be told it was lest than 5 minutes. A three-minute groping of my silicone implants and surrounding lymph nodes. The proclamation was made that everything looks “great” and I should return in 6 months. I actually was probably dressed and on my way before 5 minutes were up.

But, I HAD to go. It would have been too easy to cancel. It would have been too easy to blow it off. And what if? What if that one renegade cell… Nope, I HAD to go.

And, Meghan had to come with me. She trekked like a trooper to the main hospital to get another copy of the CD of the MRI of her hand for the orthopedist appointment at 2:30. Then, we traveled on the journey to the Clinical Cancer Center. I had to push her in the push chair today. The strep was knocking the wind out of her this morning and the hips and knees were bothering her.

It was also bothering her that people were staring at her. So it was a great opportunity to give her LOTS of really LOUD pep talks. I hope a few people overheard. Some people are really dumb. Others mean well – but for goodness sakes, don’t just stare at the child. Say “hello,” “good morning,” ANYTHING… UGH! But anyway…

And after the 5 minute appointment there was another hour in travel time back home.

Just in time to let the dogs out and run to pick up some chicken breast cold cuts for her to eat before physical therapy.

As she inhaled the chips and chicken I spoke with the therapist. I am always just so impressed by how smart she is, and how much she actually cares about Meghan. She took the time to READ about Cowden’s and to try to understand WHY and HOW the small fatty masses on her palm are affecting her. If only there were more…

Right after therapy it was off to the orthopedist looking for a few answers about the hand and the wrist.

That’s where things unraveled.

Ok. I understand it’s a rare disease. I do.

I get that with an occurrence rate of 1 in 200,000 you may not have touched on it in medical school.

But, you insisted on the paperwork completed online a full 10 days before the appointment. You could have read it, or had someone flag it.

And, I made the appointment with the doctor who had been prepped already.

Bait and switch?

The orthopedist today was amazingly young. I guess the big 4-0 is approaching fast, because I could scarcely believe he was out of medical school. Everyone seems to be looking younger and younger.

No need to remind me of what that implies. I get it.

We have seen LOTS and LOTS and LOTS of doctors. MOST would rather make something up than admit they didn’t know something, which is a problem in and of itself. Not this guy.

He examined her hand. Validated the pain. Looked at the MRI report. Declared there to be “nothing orthopedic” about her problem. And then he said,

“I don’t know ANYTHING about Cowden’s Syndrome, so you’ll have to tell me what it is and what it does.”

I almost asked him to repeat himself, but that would have just been to buy me time for my response. So, as I was gathering my bags and looking to exit as fast as I possibly could, I gave him a brief lesson on Cowden’s Syndrome.

This doctor was far younger than me.

This is the technology generation.

Step out of the room and hit google.com

The first link is this one http://ghr.nlm.nih.gov/condition/cowden-syndrome

What is Cowden syndrome?

Cowden syndrome is a disorder characterized by multiple noncancerous, tumor-like growths called hamartomas and an increased risk of developing certain cancers.

Almost everyone with Cowden syndrome develops hamartomas. These growths are most commonly found on the skin and mucous membranes (such as the lining of the mouth and nose), but they can also occur in the intestine and other parts of the body. The growth of hamartomas on the skin and mucous membranes typically becomes apparent by a person’s late twenties.

Cowden syndrome is associated with an increased risk of developing several types of cancer, particularly cancers of the breast, a gland in the lower neck called the thyroid, and the lining of the uterus (the endometrium). Other cancers that have been identified in people with Cowden syndrome include colorectal cancer, kidney cancer, and a form of skin cancer called melanoma. Compared with the general population, people with Cowden syndrome develop these cancers at younger ages, often beginning in their thirties or forties. Other diseases of the breast, thyroid, and endometrium are also common in Cowden syndrome. Additional signs and symptoms can include an enlarged head (macrocephaly) and a rare, noncancerous brain tumor called Lhermitte-Duclos disease. A small percentage of affected individuals have delayed development or intellectual disability.

The features of Cowden syndrome overlap with those of another disorder called Bannayan-Riley-Ruvalcaba syndrome. People with Bannayan-Riley-Ruvalcaba syndrome also develop hamartomas and other noncancerous tumors. Both conditions can be caused by mutations in the PTEN gene. Some people with Cowden syndrome have had relatives diagnosed with Bannayan-Riley-Ruvalcaba syndrome, and other individuals have had the characteristic features of both conditions. Based on these similarities, researchers have proposed that Cowden syndrome and Bannayan-Riley-Ruvalcaba syndrome represent a spectrum of overlapping features known as PTEN hamartoma tumor syndrome instead of two distinct conditions.

Some people have some of the characteristic features of Cowden syndrome, particularly the cancers associated with this condition, but do not meet the strict criteria for a diagnosis of Cowden syndrome. These individuals are often described as having Cowden-like syndrome.

Read more about Bannayan-Riley-Ruvalcaba syndrome.

How common is Cowden syndrome?

Although the exact prevalence of Cowden syndrome is unknown, researchers estimate that it affects about 1 in 200,000 people.

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Was that so hard? Meet me half way people.

It’s still hard for me to believe that cost me a co-pay.

Let’s see if the hand surgeon on Thursday can offer us something better.

Or maybe the rheumatologist will actually call me back.

Taking bets?

Every day is a great adventure!

It’s a Thin Line…

Published on July 1, 2013July 1, 2013 by beatingcowdens8 Comments

It’s a thin line between love and hate. That’s how the story goes right?

These days I feel I am walking a very thin line, teetering tenuously between confidence that I will end on solid stable ground, and terror that I will just fall off.

Balance has never been one of my strong suits. But I try. Every moment of my life I try.

It’s a thin line:

between paid work and “real” work

between schedules and chaos

between strong and terrified

between education and being “over informed”

between smiling and crying

between a cider drink, and a few ounces of straight rum

between prevention and over protectiveness

between not screening, and missing it

between realizing everyone has struggles, and feeling overwhelmed by your own

between knowing it could be a whole lot worse, and wanting to crawl into a corner and give up

between a vacation, and a time to catch up

between feeling lonely and being alone

between cancer and “precancer”

between prevention and overzealous

between holding your girl as she cries in pain, and crying the night away yourself

between asking all the right questions, and asking too many questions

between BEATING COWDEN’S, and giving in…

It’s a thin line.

I am walking it every day this month, as the schedule changes constantly, and the number of days I had nicely confined so as not to overtake our summer quickly begin to envelop July.

I am walking it, as I wait for call backs that never come on time – cell phone pressed into my fingers.

I am walking it as I wait to schedule haircuts, and dentist appointments, and things that “normal” people do.

Why do I ask so many questions? Why do I push for answers no one really wants to give? Why?

Because if I don’t – who will?

It’s not going away.