Hyper-vigilance

Published on September 20, 2015 by beatingcowdensLeave a comment

Hyper-vigilance. Although Wikipedia is not my favorite source for all things – it defines this quite well.

Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect threats. Hyper-vigilance is also accompanied by a state of increased anxiety which can cause exhaustion.

When we were first diagnosed, and I had a long conversation with a Mom who had been where I was many years before, she told me we would be OK, but we would need to be forever vigilant. Understanding now, what I didn’t then, is that Cowden’s Syndrome requires more than vigilance, it necessitates hyper-vigilance.

The two are very different. One is a state you may be in sometimes, when it is necessary. The other is a place you never leave. Ever.

I don’t compare illnesses, in the sense of one being, “better, harder, easier, more difficult, more painful…” than another. That to me is silly. I know LOTS of people who suffer on a regular basis. I can’t say I would want to trade places with any of them. And, I can only speak from my lens.

My lens is that of a mother, who is watching her child battle through a chronic (FOREVER) illness with potentially life-threatening, and definitely life-altering ramifications – while battling that same illness myself.

I don’t view us as “sick” people. As a matter of fact we are regularly called,” The healthiest looking sick people…” But, we aren’t “well” either. It gets complicated. Quickly, and often.

Hyper-vigilance requires me to do everything I perceive is in my power to try to stave off the tumors and vascular anomalies looking to create havoc, chaos and confusion in our bodies.

Hyper-vigilance necessitates monitoring food intake. Avoiding food allergens/sensitivities because they cause vomiting and severe GI distress. That means NEVER leaving the house without food. JUST IN CASE. It also means spending weekends cooking so that “quick meals” come out of my freezer and not a drive through window. It means providing the most intense nutritional products I can find to fuel a body that would otherwise be running on empty. It means driving far and long to get the right food at the right stores. It means making sure the sweet treats that are allowed are not full of dyes and preservatives because they compromise further a documented severely compromised immune system.

Hyper-vigilance means watching the medication intake. To make sure we don’t forget an antiviral. Because when we do it sets off a tirade of events that are hard to bounce back from. It means typing the list, and checking it over. It means teaching her to know her medicine on sight. It means avoiding everything we don’t need and willingly taking things like probiotics to help that fragile stomach. It means knowing that when you have chronic viral infections they are ALWAYS waiting for an “in.” It means leaving NOTHING to chance, and having spare pill cases in every bag with extra of everything, especially digestive enzymes. It also means spending HOURS AND HOURS trying to make the mail order medication people get it right. Which I sometimes think is just not ever going to happen.

Hyper-vigilance means scheduling the doctors. All of them. All the time. It means making sure all the screenings, for all the ridiculous number of cancers we are at an increased risk of developing, are done on schedule. It means often following up on those appointments, with imaging studies and more appointments. And then repeating those “unclear” imaging studies, again and again. It means getting blood work done, often. Usually at least once every 4 weeks. It means talking to the endocrinologist and problem solving with him when he admits “it doesn’t make sense” as you strive to help your girl at least feel better. It involves medication adjustments. Making sure it’s taken on an empty stomach, and every single day. It means there is always a list nearby of who needs to be scheduled next. It’s right alongside the pile of bills that have inevitably been messed up by someone, and now need receipts faxed and hours on the phone to be kept out of collection agencies.

Hyper-vigilance is hearing the symptoms every day and trying not to panic. When there is a headache, sharp and sudden, or a pain in the knee, or the back, or the shoulder, or the leg, and you know your kid is NOT a hypochondriac as some others would like to think, you have to listen, sort, and mentally file all of these. Hyper-vigilance is keeping track of which ones repeat and which ones go away on their own. Hyper-vigilance is being very aware, but never panicking. It’s a fine line.

Hyper-vigilance is Physical Therapy. As often as we can fit it in. Because something always hurts. When one foot is 2 sizes smaller than the other because the treatments for the AVM in the knee cut the blood flow to the foot, so the bone stopped growing, you end up “off sides”. The hip, the shoulder, the knee. They all hurt, and it won’t get better. It will only get managed. For as long as we can fit in the PT.

Hyper-vigilance is also finding balance. It’s also searching somewhere for “normal.” It’s making 4 swim practices a week, often on raw nerve. Because she wants to feel normal. She wants to compete. And let’s be truthful, she wants to win. It’s about me never really leaving the grounds of the college 12 extra hours a week because we are always one step away, and sometimes a half-step from “just in case,” and “what if.” It’s getting her to drama, because she’s skilled there. And she fits in. And the teacher is awesome, and the kids know her for who she is. It’s about balancing the schoolwork, and doing her best, while teaching her not to beat herself up. Too much stress is no good for anyone. Especially when you have this random tumor growing condition that preys on extra stress.

Hyper-vigilance is remembering I have this “Cowden’s Syndrome” too. It is making sure I am at my best so that she is at hers. It’s remembering that I sport fake silicone boobs as a constant reminder that I’m not invincible and cancer found me. It’s remembering they were worried enough to take the uterus and the ovaries too. It is working hard, at my job, and my life, and showing her it can be done. But it’s also about letting her know I get tired too. Because in those moments she sees that she is normal. And yesterday when I struggled to even walk up a flight of stairs, I saw the concern in her eyes. And she picked up the vacuum. And she helped. It’s teaching her to take care of herself by some days letting her take care of me.

Hyper-vigilance is walking. Me. Walking 4-5 miles a day almost every day. Because my bones are already crapping out. After 30 years on thyroid pills and 3 years after a hysterectomy, at 41 I’ve been placed on warning. It’s necessary for me to take good care of me. To fuel my body properly. To limit the junk in. To respect this body because it’s already got a lot going against it.

Hyper-vigilance is making decisions in the moment. It is having to say no, we can’t go. It’s not being able to tell people in advance. It takes away from advance planning, even the fun stuff. Because life with chronic illness is day by day. It makes me feel badly, often. So sometimes I avoid making plans. I don’t even like to volunteer for too much because I just don’t know whether things will be ok that morning.

Hyper-vigilance can be very isolating.

It’s hard for some people to understand. And I get it. Because a few years ago it might have been hard for me to understand too. It makes people uncomfortable that this thing we have is never going to get better. People feel better when things can be fixed. But it can’t. We are not going to grow out of it. It’s here. It’s part of us. Like the ‘elephant in the room.’ But, we understand other people’s problems too. We get the myriad of health issues that surround us. And we empathize. And we don’t need to be sheltered from them. As a matter of fact, we might like it is sometimes people shared their worries with us too.

Hyper-vigilance is exhausting. And today I took a two-hour nap. Because my throat started to hurt. And my body was giving me all the warning signs that I had pushed a little too far. I shortened the walk. I stayed in mostly.

It’s like training. For real life. Because there is not an event at the end, that will finish with a medal and a sense of accomplishment, and a new goal. My forever goal will be to keep us healthy, and to keep the Cowden’s Syndrome at bay. The only path to this end is hypervigilance. And even then, just like in life, there are no guarantees.

We remain forever Beatingcowdens!

To the Middle School Girls Who Doubt My Daughter…

Published on July 20, 2015July 20, 2015 by beatingcowdens6 Comments

July 20, 2015

To the Midle School Girls who doubt my daughter’s medical conditons:

I want to start by telling you, I know it’s not your fault. You are generally healthy. You were raised by people who are generally healthy. You get sick. It gets better. You want your share of attention. You resent that sometimes my daughter needs a little extra help in the halls. It’s not fair that sometimes she needs to sit out of Physical Education. You are tired too, right? It doesn’t seem fair that she needs to leave early from the class right before lunch. You’d like to stretch your legs too. Why does she “get” to being her own food everywhere? And is she really “allergic” to all those foods? Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk? She must be lying, right? Looking for attention again? Why does she get to leave early so often? You’d like to get out of last period too. I get it. I understand. You look at people who look sick, and you are probably really compassionate. Except now that you’re older, it’s time for me to let you in on a well kept secret.

Not everyone who IS sick, LOOKS sick.

Take a moment and process that.

Now I’d like to tell you a little about my daughter. The real Meghan. Not the one you always see, but the one I see. The one who I have kissed before 13 surgeries, as she left me for the operating room. The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital. The one who has shed tears of pure frustration and anger over the things that have been restricted from her life. The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.

Let me tell you about the Meghan who knows your problems. The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok. The one who understands deeply your anxiety about getting a blood test. The one who “gets it” on levels you’ll never understand.

Let’s talk about the paraprofessional. While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help? Do you think she WANTS an adult escorting her through the halls? Think about that for a minute. She doesn’t WANT to be different. Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.

And about the trips to the nurse. Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all? Any idea what it is like to never be spontaneous about just grabbing a bite of something? Because your body simply doesn’t make the enzymes it needs to digest food without help.

Please don’t even get me started on the cafeteria. In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous. But, out of the house? Not so easy. You want to know about her allergies? About how she can be “allergic” to milk and eat a product that contains milk? I get your confusion. But, here’s a tip; when you are confused, ASK, don’t assume. She’ll probably willingly share the reasons with you if you are actually interested.

She spent a large part of her very young years vomiting a lot. Sometimes so much that she ended up in the hospital. Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3. She had ear infections all the time and her head was full of fluid. She didn’t talk much, (I know – hard to believe) because her head was clogged up. She cried because she hurt so badly. She was allergy tested for lots of things. Nothing came up. Nothing at all. Then I used my brain. And my instincts. And we targeted some foods.

And do you know what we learned? We learned that without milk, she doesn’t get ear infections. And she learned how to talk right away. And her head stopped being so full all the time. And she could rest.

Then I kept looking. And I learned that soy, in its purest form, caused a rash all over her body.

And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.

Are they “allergies” in a technical sense? No, I guess not. But, they are just as important. I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods. Even strawberries. Or anything with seeds. Or anything too greasy. Or cross contaminated. (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)

So the meal bars she eats at lunch, yes they say, “conatins milk.” But, you know what? They agree with her. She doesn’t love them, but she eats them for NUTRITION, so she can function through the day. The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.

Why would she be anything less than honest about not being allowed to have regular milk products? Do you know she has never had ice cream from the ice cream man? I have to send her own pizza and chips and cake to parties. Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs? Does that really make any sense? Ask yourself of all the things to be less than truthful about, does that even enter into logic?

And about physical education. Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her. Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain. The girl who wants to play longer and harder than any of you, but can’t. The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time. But, she can’t. Because the surgeon said not yet. And even when she’s able to join in, it will likely be on a restricted basis. Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair. Walking more than about 1/2 mile consecutively is too stressful on the knee.

Oh, and the tired. Yep, you are tired too. I get it. You were up late last night. Probably watching a movie, or doing something fun. So you are tired. But, she went to bed at a decent hour. Hers is a different tired. Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal. Hers is from a body that makes a hobby out of defying her. You’re both tired. But, it’s not the same. Trust me.

This is the girl who stays on stage during drama even if it kills her. Even if the pain is at its greatest intesity, because no one has restricted her there, yet.

This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water. This girl has to go to PT 2x a week just to get into the pool. This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve. This is the girl who took less than 2 weeks off from swimming after her knee surgery in May. Because she WANTS to play.

And all those times I pick her up early. It’s not for a manicure/pedicure. Turst me. See, Meghan has a rare disease called Cowden’s Syndrome. She’d be happy to tell you more about it. She got it from me. It causes non-cancerous, and cancerous growths to grow all over the body. She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.) But, there is a doctor, and often a surgeon, for just about every body part. There are MRIs and scans, and hours travleing to Manhattan. No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt. We do the hospital tour. The average round trip is 4 hours, usually after a long day of school.

This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet. This girl has had her mother diagnosed with cancer when she was in 3rd grade. This girl has the same genetic condition as her mother, and the same cancer risks. Some days she has a lot on her mind.

Meghan is not perfect. I know this, and so does she. And if you have a problem, talk it out. Sometimes you’ll be right, and sometimes she will be.

Just don’t assume things. There’s a saying about that… and it’s all true.

You see invisible illnesses, like Cowden’s Syndrome are very, very real.

Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.” They would ALL benefit from your compassion.

Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.

Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious. Forgive me the word adjustment. It’s necessary to ensure her safety.

You see the hardest part about all this for me, is not being able to give you this speech in person. For the last 12 years I have been her voice, her mouth, her protector. Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this. She has to find her own comfort zone.

And I have to watch.

My confidence in with my daughter. She will pick the right friends. She will speak up at the right times. She will learn all about herself. She will become her own best advocate, to you and to the world.

And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.

Don’t worry, she’ll pack her own snacks.

Sincerely,

Meghan’s Mom

“She’s so unusual…” and Other Ironies

Published on July 19, 2015July 19, 2015 by beatingcowdens3 Comments

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days. The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?” Sometimes I find that question to be the biggest irony. I struggle often, and deeply. The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

So often my writing is where I work it out. I type. I think. I read and reread. And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need. And when I am unsure, and it just doesn’t sound right. I wait. Just like I advise people to think before they speak, “Is it true? Is it kind? Is it necessary?” I try to think before I publish. So last night I sat wrestling with this. And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.” “I’ve never seen that before.” “Typically…” And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist. Meghan felt something in the back of her mouth. An X-ray revealed an impacted wisdom tooth. She’ll be 12 next month. The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm. Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy. Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density. My next phone call needs to be to the vascular surgeon. He had some success with the right leg in February. The left leg is in dire need now. That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk. Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year. They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser. We’ve got some neat ideas. It passes the time.

For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,” and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age. One day we will take her to California for the Global Genes Advocacy Summit. One day her vision of a denim ribbon necklace will come to fruition. One day. But not this year. Because this year I am trying to schedule vascular surgery that weekend. Because we have to prioritize. Right?

I have set some fitness goals this summer. I am setting a 10,000 step a day minimum. I am aiming for at least 5 miles a day. My dog is in the cross-fire of this goal. She is my walking partner. Because she likes to walk – but maybe not quite that far- and she can’t really say no.

I am always struck by the ironies in life. I am stronger than I have been in years. In many ways I am healthier. I have found Isagenix, and I feel better. Stronger. More resilient. More able to cope with life’s obstacles.

Which is good. Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes. And many of us feel that way most of the time. But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids. I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either. Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age. I have lots and lots of people I like, but not too many friends to get together with. Sometimes I wonder what it would be like to just get together. And chat. Maybe over lunch, or dinner, or drinks. Or maybe have a barbecue, or even a night with other couples. Where everyone socializes. And no one is overly worried about anything. But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating. The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with. And I get it. And it doesn’t make me mad. Because it is what it needs to be right now. And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that. What I write here is a simple representation of facts that are. They just are. And maybe one day they won’t be. But, I have already learned not to wish life away, not even the uncomfortable parts.

But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom. I crave careless, schedule free days. I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere. Somewhere with an end I can not see. There are stops along the way to make us stronger, wiser, and more patient. There are lessons on empathy and compassion to be learned. There are experiences that will turn us into the people we were meant to be. The road is long and winding. Sometimes the climb is tough. But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost. The song from Pippin had been in my head all day, resurrected from memories of ages ago. Yet, I couldn’t shake it. Where do I go?

This morning Meghan was well. She woke up well, and early enough to make a two-hour morning swim practice, which she completed. I had time to walk a few miles near the pool. The sun was beautiful, and the air wasn’t quite that warm yet. There were birds singing happily, and flowers to appreciate.

After swim we made it to church. It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give –

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us. The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ. Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts. As I chose mine my eyes were full of tears. Not of sadness for those people, but of the promise that they are also enveloped in the love of God. My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water. And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

I am not “UP” by my doing at all. I treat my body well. I treat my mind well. And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God. That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

Mortality

Published on July 1, 2015 by beatingcowdensLeave a comment

The awareness that one day we’re not going to walk this earth anymore.

Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.

We face this reality at different points in our lives. Some are frighteningly young, and others are blissfully old. But, eventually, that awareness either creeps in or hits us like a speeding train. (Figuratively, or course.)

In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.

For me, my solace, my comfort, and my focus, come from my faith. My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.

Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.

As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young. (young for her, and for me too!) She got it. She found clarity, but it was a few tough months. And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.

I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer. But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality. I was 10 years younger than Mom was at the time of her diagnosis. I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior. When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.

And there was reality. Unable to ignore. Cancer had lived within me. Could it live again? Would it? When? Why was I going to be OK when so many others were not? Was I going to really be OK? What if they missed it, something bigger?

I was fortunate. Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer. I needed no treatment, no medication. But, my status had changed. In the eyes of the doctors, I was now an even greater risk. Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed. The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk. A significant risk.

Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages. An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age. The things we celebrate…

My Cowden’s Syndrome people are known to me mostly through the internet. We live across the country and across the globe. We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer. While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits. There is that “Sword of Damocles” hanging above our heads. There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry. We stare at our own mortality each time we look in the mirror.

We have an extra bond when it connects to our children. A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality. We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore. We have gently answered questions about family, and future, that have no real answers to date. We ache for them. We wish to take it all away. We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.

Mortality will bind you, and if you’re not careful it can blind you. That is why there are support groups, for cancer patients, and others who have come close to losing their lives.

This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.

I will protect their privacy here, and tell their story as generically as I can.

I connected with Alan, about 6 weeks after my father died. Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps. The award was never granted, and I wanted to pursue it on his behalf. So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006. I wanted to know who remembered him, and his story.

Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.

My Dad, the "Irish Marine" — My Dad, the “Irish Marine”

I sent 20 letters out. EVERY SINGLE MARINE responded to me. EVERY ONE. Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences. Many shared some funny anecdotes. And as hard as I’m sure it was, they all connected with me.

I had heard about the Brotherhood of the Marine Corps. I could not have fathomed the depth of that bond. One after another, they all left me with the same heartfelt sentiment. “You are the daughter of our brother. We will help you always in whatever you need.”

Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned. My Dad battled his own demons for many years before our relationship began to form. But the offers of these Marines were sincere, and genuine.

Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries. In the end, we lost the battle on a technicality. Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.” The letter was cold. The case was closed.

We lost the Purple Heart but gained so much more.

I was sad, mad, angry and disappointed. But I was so grateful for the Marines who wrote letters of support. I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result. I wanted this for him, because he never fought for it himself.

And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me. He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.

So, this weekend I headed to West Virginia to thank him myself. I met a group of Vietnam Era Marines, several of whom had served with my father. I watched them together, in awe an amazement. I was welcomed into their group with instant acceptance. And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told. Surely a contrast to the realities they had faced as young men years ago. But, the bond between them was unbreakable. There indeed was the Brotherhood of the Marines, but there was something else.

Mortality.

They faced it in the most horrendous of ways. They lived it daily. They buried their brothers. They knew their return home was not a guarantee.

And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life. As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”

I was among a group of people who had faced their own mortality almost a half century ago. And they have a bond that can not be explained. It is amazing.

And among the most amazing to me was the woman I met. She was not local either, but she, like I, had traveled for this celebration. It was not her first time. She had been around for almost 10 years. About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with. She had never met her father, but here were father figures galore ready to embrace her. And they did.

A bit ago her father’s diary surfaced from his time in Vietnam. She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily. His diary ends with, “When will it be me?”

Once you have looked your own mortality square in the eye, you can not walk away the same person.

But, it is up to you what you do with the rest of your life.

As for me, I choose bonding with people who “get it,” be they old friends or new.

I choose focusing on what we can do, not what we can’t.

I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.

Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.

As for us, in this house, we choose to remain focused on

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

Reflections on Mother’s Day – from a “Rare Disease” perspective

Published on May 11, 2015May 12, 2015 by beatingcowdensLeave a comment

Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain. I’ve said this before, and I will say again, it is a blessing and a curse. It is a good thing to celebrate accomplishments, and the anniversaries of such things. It is dangerous territory to recall to be caught up in the negative aspects of any day. By doing so you give it power. And, if you are not careful you give it power over you.

It is a dangerous road to walk. I have done many miles on it. And my brain does not differentiate the “good” dates and the “bad” ones. I remember them all. The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.

I have never been a fan of “Hallmark” holidays. Valentine’s Day, even after I found the love of my life, has never held any appeal. Mother’s Day and Father’s Day don’t do much for me either. Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.

From: Mother’s Day Turns 100: Its Surprisingly Dark History

By Brian Handwerk, for National Geographic

PUBLISHED MAY 09, 2014

“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.

“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.

But Jarvis’s success soon turned to failure, at least in her own eyes.

Even Anna Jarvis did not intend the holiday as it has become.

I have epic amounts to be grateful for. And I am. Every day. I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.

In church we were taught, “Honor thy father and thy mother…” I believe the meaning was every day.

So yesterday I needed to do some soul-searching. And I think I figured a lot out.

I have a tough as nails mother. She is the strongest woman I know. Not a day of my life goes by that I am not grateful to her, and for her. And I try not to let too many days go by without telling her so. Life has taught some tough lessons, and sent some reminders about how fleeting it can be.

One of the many lessons I learned from Mom

I have two grandmothers on this earth. One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.

I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me. I am so grateful for that love.

And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.

I am so very thankful I did not wait to acknowledge them only once a year.

My girl is recovering from surgery. On my couch. In pain. Feisty. Looking to move. Bored. There would be no grand family celebrations yesterday. My husband was fixing our deck that is literally falling apart. A labor of love – and safety. I stopped in for a quick visit to Mom and one Grandma.

I reflected about Mother’s Day a year ago. Spent in the pediatric unit at RUMC. Scared out of my mind. Not knowing what we were up against.

Then I thought about Mother’s Day 2008. A few days after the tonsils and adenoids came out.

Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.

Then I thought about my friends. The ones who have lost their moms way too early.

And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.

My heart aches for those who have lived through the unthinkable, and have lost their own children.

Why so much pressure put on one day?

Wouldn’t it just be easier if we celebrated our Moms every day? Instead of waiting for one day?

I know I may have an unpopular idea here, but so many unconventional things work for us.

I would never claim our lives to be “harder” or “easier” than anyone else’s. I’m not that kind of fool. But I will dare to say that maybe raising a chronically ill child makes it “different.” Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.

I stick a note in my 6th grader’s lunch just about every day. And I will until she tells me to stop. I will remind her in as many ways as I can, of my love for her every day.

Life is scary. Our lives are scary. Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours. This is not a rare occurrence. This is something that goes on regularly, for one of us. But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.

Mother’s Day is every day. From mother to child, and child to mother, and aunt to niece and grandparent to grandchild. Not in the, “buy me lavish gifts or send me to the spa” sense. But, in the, “I’m really lucky to have you. Right now. Today. and thanks. For that thing you do. For that smile. For that hug. For calling me. For calling me out. For driving me to the store. To school. To practice. For driving me insane. For making a mess. For sometimes cleaning it up. For sitting by my hospital bed. For getting me ginger ale. For helping me walk. For making me laugh. For never giving up on me. For understanding I won’t be here forever. For being my cheerleader. For supporting me. For listening to me. For shutting up. For saying just the right thing. For explaining the math. For butterfly kisses.”

Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter. Right now we’re nursing a recovery. And it’s coming along, thank you very much. We are incredibly proficient at this.

And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.

Scars…

Published on July 19, 2014July 19, 2014 by beatingcowdens3 Comments

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival. Maybe it’s maternal instinct. Maybe it’s denial. Maybe it’s some combination.

But then there are days that it smacks me right across the face. And it ~~stings,~~ no, actually it’s more like a scalding burn.

I post mostly about Meghan. She’s my hero. She’s my inspiration. She motivates me to be a better person, every day. But, if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed.

I feel good. I really do. Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars. They hide behind my clothes like a little secret. Cause people forget. And that’s what I want, because most of the time I forget too.

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time. And my shirt doesn’t sit quite right. And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction. I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal. It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week. My two-year follow-up. Hard to imagine. She gently reminded me again that she could even things out whenever I was ready. No cost thanks to the positive pathology for breast cancer, and the genetic mutation. No monetary cost. I’m not ready. Yet.

I saw the breast surgeon last week too. I see her every 6 months, so she can make sure nothing sinister is growing behind those implants. The reality and the reminder that as fortunate as I was – I still had breast cancer. And once you know for sure that those malignant cells had life in your body, you never look at things quite the same. “No lumps or bumps,” she happily reported. “See you in 6 months.”

I can’t wait.

And there are the lymph nodes in my neck. They were checked last week too. Sonogram. As long as they stay stable, we can leave them alone. “But, if they grow…” she reminds me every time. Six months for her too.

And my legs. Fitting into the smallest size they have ever in my life the veins are protruding again. The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23. But, it doesn’t really matter I guess. The legs start with a familiar heaviness. Then there is the throbbing. The last thing I feel before bed, and the first thing I feel after the alarm gets shut down. And the pulsing – like I can feel the blood moving the wrong way through the broken veins. And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2. I switch to “Bermuda” length and some sundresses. I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too. Everything ramped up a notch with the “Cowden’s Syndrome” label. There are no “regular” visits anymore. Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital. Two years since the hysterectomy too. Time marches on. You can barely see the scars from the laproscopy. But I know they are there too. A few inches under the implant scars. Reminders of the year that changed my life. Our lives.

The week finished with genetics. Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man. He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis. Then he drew my blood. More genetic testing. This time not because of the Cowden’s Syndrome. This time, it is to fulfill the wishes of my father. Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about. We both said a silent prayer that the test yielded a whole lot of nothing. We hugged again. It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right. The indentation on the right side was causing the shirt to fit lopsided. And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take. I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share. Yet, I want so badly to help her maintain some of her youth. Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young. There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

It only took a minute. Although it seemed longer. A hug from my husband. My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss. And it was time to shake it off.

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently

I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.” We met a lovely woman who was surprised we weren’t raising money for us specifically. We explained that we were grateful. I feel well enough to work. We have good medical coverage. There are so many not as fortunate.

When it gets to be too much, I know to fix my eyes on things far beyond the mirror. I have a greater purpose right in my own house. And WE have a greater purpose.

We are BEATINGCOWDENS… together!

Identity Crisis

Published on April 16, 2014April 16, 2014 by beatingcowdens5 Comments

Sorry it’s been so long. I am working through an identity crisis.

At first I thought it was a mid- life crisis, but upon closer review, it is definitely an identity crisis.

Sometime about a month ago someone thought it a good idea to get all involved in my bank account without my permission. So, countless hours and a police report later – that is ALMOST resolved.

Then, last week we went to file my taxes. Apparently someone already did that. In JANUARY!

More hours on the phone. More papers. Just what I was hoping for -really.

The whole thing seems almost too hard to believe, almost. It’s not the first time either.

And, I am pretty vigilant.

I mean I do blog – obviously. And I am not super careful about personal information here. But, with financial stuff I am guarded. I online bill pay only through my bank – which incidentally changed this week. I don’t answer phone solicitations, or fall for those Emails that try to trap you into believing they are real by urgently asking for personal information.

I don’t use my debit card for anything. I keep one credit card and monitor its online activity every 48 hours.

By all accounts I am on my game. But, apparently someone else is there too.

And I can’t figure out why, although I have a host of suspicions. Since we are married this is the 5th incident I can count where one of our identities has been compromised in some way. We fill out lots of papers, but we do so because we have to in whatever situation requires it.

What I want to know really is, does someone truly WANT to be ME?

I mean full on Cowden’s Syndrome, breast cancer, hysterectomy, thyroid removal, spleen tumors, kidney cysts, a doctor every 30 seconds, no break, ever… with a kid just passed surgery number 11 in 10 years, and who does all that and then some?

I’m not trying to say my life is THAT bad. I can count dozens of others whose predicaments are worse – but it doesn’t let up. Not for a minute. Ever.

It’s like that hamster in the wheel thing. Not for the faint of heart.

I wonder if my identity stealer(s) – cause they can’t know if it’s the same person- would like to hang out with me for a week or two. Maybe during a “fake” Spring Break?

That’s what my daughter has come to call it, after between us we have already covered 7 doctor’s appointments, with more lab tests pending.

Because I could ask them to spend some time on the phone with the credit reporting agencies, requesting 7 year freeze on all credit.

Or maybe they would like to copy the police reports, and mail them out.

Or perhaps they’s like to file the medical bills. And then call the get the errors corrected. And then call again when the bills go to collections for no reason.

Maybe they would like to drive. Through Manhattan. The place I swore many years ago I would never drive. All day. And pay repeatedly to park the car.

Because this week I could have used some back up. A 1 o’clock appointment Monday for me – genetics. A story for another day. And then yesterday to Long Island for one of the few doctors who listens to us. And today there was a 9AM at NYU for Mom, and a 10 and 11:15 (which became a 12:45) for Meghan at Sloan. Sometime as I was driving between NYU and Sloan I thought a lot about how this is not my “real life,” navigating between taxis with my heart in my throat. I thought about my identity thief (thieves?) and how maybe they had some skills I could use too – like driving through chaos.

And as we navigated our way back towards home to make a local appointment with the ENT to address the throat clearing, I could feel the tension on my shoulders and up and down my neck. We made the appointment, in time to hear his ideas, and hop back in the car.

Onward to a quick Gluten-Free pizza – no cheese, and off to CYO practice.

Then, granola in the car and off to the other practice. Where I sit. Now. Waiting.

Prior to my nutritional cleansing I would say I was exhausted. Now, I am just tired. Tired, and confused. But I have strength and stamina that I never possessed before.

WON'T be without my Ionix! — WON’T be without my Ionix!

Where exactly is my real life?

Is it on the cell phone asking the PA why the thyroid levels aren’t making a move to improve? I hope not. Because I don’t like the numbers and they don’t like my questions. Something will have to give.

Is it making the phone calls, filing reports, protecting the identity, keeping the house in some semblance of order, grocery shopping till all hours and at all costs?

Probably not.

The good thing about an identity crisis is it forces you to focus. It forces you to stop and think about who you are, and what matters to you. It forces you to decide to be deliberate in your thoughts, words and actions.

Initially I spent a good deal of time very angry about the identity thing. It took quite some time to start shaking it off. I am much better now- although not thrilled, I’ve come far.

See my ten year old recently in an interview about Cowden’s Syndrome said to the reporter, “You have a choice, you can be angry or you can DO something.”

Wise words from my preteen.

I am angry. But it won’t control who I am.

Identity theft sucks. It’s mean and it’s wrong, and it’s a time-consuming pain.

Cowden’s Syndrome is flat out horrendous. The follow up appointments are enough to drive you mad. If you let them.

Life seems to be tossing boulders.

Maybe my identity is “boulder catcher,” so I can put them gently down.

Or “magician” so I can turn them into something more gentle and flowery.

I know who I am.

And I can not, and will not be defined by the obstacles in my path.

I will not remain a ‘Victim” of identity theft – or anything.

I have “Cowden’s Syndrome” but I will not let it have me.

I am a mom.

I am a wife.

I am a sister.

I am a daughter, and a granddaughter, and an aunt, and a niece, and a cousin.

I am a friend.

I am a teacher.

I am a student of life.

I am a Christian.

I love.

I laugh.

I cry.

I hurt.

I heal.

I try my best.

I try again.

I forgive.

I am forgiven.

Identity Crisis – Over…

I think!

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!

Moving Forward

Published on May 16, 2013May 16, 2013 by beatingcowdensLeave a comment

May 16th for years has had a special place in my heart.

In 1985 my cousin Meghan was born. I was in the 6th grade and giddy to get to know her. I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.

"Angel Meghan" - 1987 — “Angel Meghan” – 1987

Her feisty nature, her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.

My daughter carries so many of the characteristics that endeared my cousin to me. She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them. She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.

Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy. I knew that day I had the prayers of my family, and the strength of my angel by my side.

I have a “thing” for dates. I remember numbers. Maybe this is how my love of math shows through. I like answers, and things that are absolute, or make some sense. Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating. These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person. They are all pieces of that every evolving puzzle.

I thought about the surgery this morning. I thought about it being a full year since all my “girl parts” were officially gone. I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me. Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago. And I got dressed with a smile.

I thought about Angelina Jolie. I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk. I thought about how happy I am that she has brought genetic testing into light.

But a few things have really bothered me.

PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk. I myself had been tested for BRCA1 years before I ever knew of PTEN. I was negative. The genetic counselor who tested me did not even have PTEN on her radar screen. I know its rare – I do. But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks. I am sure there are more that I haven’t learned about yet. Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well. Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.

I am also bothered by the haters. You know the haters. The “Monday morning quarterbacks.”

They have crept out in quantity and I have a few words for them too.

BUTT OUT!

If you don’t like the idea of a prophylactic mastectomy – then don’t have one. Plain and simple.

If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.

When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do. Then, maybe then you and I can talk.

Until then, wish Angelina a good long healthy life. Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.” Get a feel for what we go through every single day of our lives.

You probably wouldn’t know us if you passed us on the street. We are some of the strongest and bravest and smartest people you will ever lay eyes on. We stop and smell the roses. We hug. We smile. We laugh. We get how fleeting life is.

May 16th will always be a significant day for me.

But, moving forward -so will every day. The first year is over. Now on with the rest of our lives!

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In case you are interested…

http://idioms.thefreedictionary.com/a+sword+of+Damocles+hangs+over+head (Sword of Damocles)

http://globalgenes.org/ (Global Genes Project)

http://www.rarediseases.org/ (National Association of Rare Disorders)

https://www.facebook.com/ptenworld?fref=ts (Facebook Page for PTEN world)

Collateral Damage

Published on May 4, 2013May 4, 2013 by beatingcowdens1 Comment

In regard to surgery and absences – this year has been much better for both of us… Maybe some things are looking up. (Published June 8,2012)

beatingcowdens

Collateral damageoccurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

I don’t think it’s far-fetched toequate Cowden’s Syndrome to a war.

Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is…

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