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Balance

Published on September 23, 2013 by beatingcowdens1 Comment

I am almost at the point where I have stopped waiting for the break. I am just about ready to stop wondering when there will be rest. I am almost ready – but not quite.

September as a teacher is a month full of new beginnings. One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it. There is something special about meeting new students, or old friends after a summer vacation. There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.

So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments. See, I remember September 16, and 15, and 14 years ago. I remember September when I was still a bit unsure of myself. I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school. I remember those early Septembers thinking I was overwhelmed. And, like so many things happen in life – looking back now I realize I had no idea.

This week we organized a new car, soon to be picked up. We got an antibiotic for the sore throat full of strep symptoms again. We got a new roof on the house. The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.

This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them. We gave them to a beautiful family, and started over. She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.

This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare. I love my work, I really do. But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.

This weekend there were bills to pay. A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.

Ok - so maybe not QUITE this bad.. — Ok – so maybe not QUITE this bad..

This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache. A nasty one that just wouldn’t quit. She started complaining Tuesday and it just persisted. And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday. No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion. And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.

I remember being her when I was younger. I remember watching my mom and sister in constant motion. I remember being sick the morning after a sleepover. I remember just not feeling well. But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.

There is worry all around. I am aware of the friends and family struggling with illness of all types. I am aware of their angst and their hurt. And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.

We help her rest. We feed her the most potent superfoods we can buy…

She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue. But what to give up? 5th grade promises to be fun, but busy. Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week. Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…

And while we work on her to keep her anxiety in check, there is always mine to look after. When you have a syndrome that grows tumors, nothing is ever without a high alert. A headache, probably allergies, but what if… The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…

Life is about balance.

September is chaos. It just is.

But the nice thing about September is its followed by October.

And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.

And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.

Maybe that’s where the balance comes in…

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!

Rare. Invisible. Real.

Published on August 5, 2013 by beatingcowdens4 Comments

Those are the words that come to mind every time someone asks me to describe Cowden’s Syndrome.

Most people, even most doctors, understandably, have never heard of it before.

With an occurrence of 1 in 200,000 that is not a surprise.

There is always hope... — There is always hope…

What is a surprise is on days like today, where the sun shines a bit brighter. The traffic is a little lighter. Daddy is home on vacation. And, we met a doctor who had heard of Cowden’s, understands it, and is compassionate, likable, and easy to talk to. Yep, imagine that? A POSITIVE experience!! 🙂

We saw an NYU affiliated hand surgeon today. I am sure God heard the chorus of prayers storming Heaven for an answer for this kid, and today He delivered.

We were early for our appointment and waited in an uncrowded waiting room, while a pleasant receptionist organized the paperwork.

We were taken promptly at our scheduled time. We met with a friendly, competent PA. She had the hands Xrayed. The doctor was in the room 10 minutes later and immediately had Meghan on his side when he started to talk about two of her favorite things – Disney and swimming.

He examined her hand. He easily recognized the soft tissue tumor that is typical in Cowden’s Syndrome. He told her stories of another young boy he treats with a rare disease who grows bone instead of tissue. He validated her. He was confident. He drew a picture, and explained why that tumor was causing pain.

With every word he spoke her smile grew. The hope went back into her eyes. She waited anxiously for him to tell her he was going to take it out.

She almost leaped up and cheered.

August 20th in the early morning hours. my then 10 year old will prepare for her 10th surgery.

That’s how you know a kid is at her wits end. When surgery is an exciting option.

He told her it wasn’t going to be better right away. He asked if the PT from the letter we showed him (you know – the PT who had it right ALL ALONG! 🙂 could rehab her hand. I told him I was quite sure she could, but I would ask. (Actually – I have no DOUBT she can do anything. Dr. Jill NEVER gives up on Meghan!)

He said the pain may be worse for a bit after he “messes around” in there, but that gradually she will feel the pain lift and the range of motion return. I wanted to hug him.

All it takes is someone who “Gets it.”

We all want to be validated. As adults we often struggle to have our concerns made valid by those we love. When you have a rare disease, where the symptoms are often invisible, you struggle to be taken seriously. People are quick to pass judgement.

She looks fine, why can’t she walk? She must be lazy.

She is complaining again? Attention seeking,

So when you are just trying to have your voice heard, at the same time that you are trying to find your voice -life can feel extra challenging.

Cowden’s Syndrome is a struggle. We are buoyed by the fact that we have each other. I have Meghan as my inspiration, and she has me as her advocate.

I will NEVER give up. She will continue to get the care she needs. She will continue to see doctors who validate her. She will continue to inform an under informed public with her “cards.”

She is my heart and soul, my sunshine. She deserves nothing less.

We can’t change the “Rare.” The “Invisible” or the “Real.” But we can open the eyes and hearts and minds of more and more people every day. Ours is one of so many other Rare Diseases. We are grateful. We are blessed. Even through our pain we have gratitude for our blessings. And we will move forward with our mission of awareness.

“Donkey Butts!”

Published on August 2, 2013 by beatingcowdens3 Comments

I could barely contain my laughter, but by then we needed a good laugh.

We had just left the hand surgeon. The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.

I came as usual, armed with a thick heavy binder, a recent MRI CD and reports, a list of all current doctors.

I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger. You know, the one she says helps alleviate the pain when she presses on it?

He said it was “barely there.” Yes, and 2 weeks ago it wasn’t there at all.

He took an Xray. Obviously low radiation, (I hope) because no one left the room.

The bone structure is fine.

Shocker!

And he repeated to me that the MRI was fine. (YEP, I know.)

Then he asked if she had a rheumatologist.

Yep, she told me to go see a hand surgeon.

And he asked me to explain Cowden’s Syndrome.

But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.

I gave the beautifully written letter from our PT. It explained everything so clearly.

Pause… Pause… Obvious think time for the doctor.

“I don’t know what to tell you.”

EXCUSE ME?

” I am sorry I wasted your time.”

That was it. No request that we come back. No suggestion on what to do next. Pay the Copay (AGAIN!) and leave.

So when we got to the car Meghan and I were both agitated. Rightfully so. She is so frustrated. 8 weeks plus, and she doesn’t have the range of motion in her wrist. She was so angry. How is it that these medical professionals keep turning her away with no answers and still in pain?

I told her she was entitled to a fit. She is above that. She got angry for a bit, then frustrated. But I have definitely had many worse fits this summer alone.

Then, she said, “You know what Mom? They are all Donkey Butts! All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”

I spend a good deal of time working with her on appropriate language for a lady. But I almost had to pull over in hysterics from laughing so hard. I think she nailed it – politely and accurately.

Round three Monday 10 AM in Manhattan.

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.

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

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!

But wait, there’s more!

Published on July 30, 2013 by beatingcowdens4 Comments

Sorry if I got you too excited with the title. It’s really nothing too thrilling. It’s just – there’s more. There is always more.

I held the phone all day in hopes I would get the promised call from the rheumatologist today. Really I should know better. At this point I just want to know if I can raise this child’s medication. But, we will add that to the list of conversations for tomorrow.

Tomorrow – happening in just a few minutes. My how time does fly. And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today. We actually had a case of the giggles.

It started when I called about the car. The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.

Today’s report was that they are “at a standstill.”

WHAT? A work stoppage on my 7 month old car?? REALLY?

But they have to wait for authorization before they can ORDER any more parts.

AND, they are waiting for a “Field Mechanic” to come take a look.

How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,

At least they are on the same page as I am now.

Meghan and I HATE the rental. It smells, It shakes. It’s dusty.

But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.

Funny what can make us laugh.

We know each other really well Meghan and I. We are very “in tune” so to speak. I guess it’s a product of being together so often in so many precarious situations.

So as we walked up to swim practice again tonight she complained of pain in her neck. That was weird.

I touched it – checking for lymph nodes. Nothing obvious.

She swam the first 50 yards and looked weak. The coach motioned for me to come to the deck.

She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.

Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.

I stepped back from that level of determination. The coach agreed to let her swim if I was close by and we both watched.

She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.

Only ten minutes left in practice anyway, reluctantly she agreed.

And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.

That was it. She was talking and then all of a sudden she was telling me she was swallowing nails. She was pale.

It happens that fast. This isn’t so much the Cowden’s but the weak immune system. The IgG subclass deficiencies, the missing mannose binding lectin. From winning her heat, to flat on her butt. That fast.

So we drove home and she showered. We talked about the pros and cons of urgi care at dinner. We had the conversation more for something to talk about. We all knew she had to go.

So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions. He dove right in for the strep test. He dug into her throat and patiently watched for that second line to appear. And finally – close to the 5 minute time frame, he walked over and said to me “here it is.” Faint as anything, but it was there.

“Smart Mom, by tomorrow she would have been a mess.”

I know. I know, It’s that fast and that hard. If I wait – it gets ugly.

That’s the scoop on Strep Throat – from a family that has seen a lot of it. We thought we were rid of it when the tonsils left.

We forgot that Cowden’s patients can regrow their tonsils. So the tonsil tags forming again in the back of her throat are little disease mongers.

The first dose of antibiotic went in around 10. The second one will be tomorrow morning.

Tomorrow she was supposed to be at Bible School. Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.

I hope its quick.

She has PT at 1, and the orthopedist at 2:30.

No rest for the weary. Have to check on that hand.

Lemons

Published on July 23, 2013July 23, 2013 by beatingcowdens1 Comment

Generally I try to be a pretty positive person. But really I have to say this is getting a bit ridiculous. I am starting to wonder if I am doing something wrong. I mean everything feels like a project, every situation an issue.

Its no small wonder people sometimes tire of talking to me. I tire of telling tales over and over again. Really, I am not a big fan of drama at all.

And yet, as the precious weeks of summer tick by, and one obstacle after another seems to end up in our path – today I did feel like squeezing some of our lemons in a few people’s eyes.

My constant awareness that it could be worse; my attentiveness to the struggles of others is what keeps me grounded, but it may be even more exhausting. The prayers for young babies, and new mothers, the prayers for families who have lost young loved ones to tragedy, the prayers for the young children who are ill, the prayers for my grandmas – all three of them dealing with their own health issues… and the list goes on. I DO know it’s not just us. But sometimes when it seems to be one lemon after another, I get tired of ducking.

I know the saying about lemons, and an old cliche is good now and again…

But sometimes it just doesn’t cut it.

Sometimes lemons are, well – just sour.

My girl has been complaining of her wrist and hand since June 4th. I remember the date very specifically. And it has been a long 7 weeks. The last few weeks of school she could barely write. We tried braces, no brace, resting, ice, heat. Nothing. The pain gets worse. Then the MRI says normal and I want to spit. (Lemon juice in someone’s eye!) Now we wait while the MRI gets reviewed again, and its time to have a surgeon look at what appear to be soft tissue tumors (at least 2 of them) forming on her hand. One has been there since – forever. The other appears to have grown in size in the last 72 hours. I am not surprised they didn’t show up on the MRI.

This is the same child who took 7 sonograms to have her gall bladder diagnosed with “milk of calcium” and after three “negative” sonograms for the obvious mass growing out of her back years ago – the surgeon decided to trust his instincts and ended up removing a sizable lipoma.

This kid breaks all the rules.

And that’s before we even get to the ramifications of the diagnosis of Raynaud’s Syndrome and its implications made off the MRI. ( I guess that means it was … almost normal?)

So tomorrow I will call an orthopedist to check on insurance issues and to see if they will take a look at this kid. (This one comes HIGHLY reccomended! :-))She certainly can’t start 5th grade unable to write, and this can’t go on forever. So, another doctor it is.

It should be easier to get to the doctor after Enterprise picks me up at 10 tomorrow and sets me up with a rental as my relatively NEW car spends one too many days at the “car doctor” who seem unable to fix the problem either.

This is how long I waited on hold – before I hung up the phone and drove there myself…

All this as we clean out the attic to prepare for the new roof to be installed in a couple of weeks, and we wait for the people to call us back about the class action lawsuit that somehow explains the water damage and dry rot in our bay window.

So if I stay stuck on the lemons I may lose perspective, and God knows I need that to get by. Instead of wishing troubles away I pray for the stamina to continue to endure, and endure. Wouldn’t trade my life for anyone’s. But, God give me strength to find the rainbows – even in the lemons.

And as I organize my paperwork – constantly – tonight I write a check to support “Alex’s Lemonade Stand.” And I pray for all the parents faced with cancer in their children. It strikes fear in my core, so I do whatever little I can- knowing all too well we can all be tossed into places we would never venture to on purpose.

And as I reflect on today, I guess it was a success. We did get into our much underused pool for some mother/daughter time.

And when all is said and done, and I have had a few glasses of cider, and I can sit down and regain my perspective – I have a pretty cool kid. This Cowden’s Syndrome thing – it really sucks. But its such a part of us now, that I can’t imagine giving it up. We are not defined by it, but it is a part of who we have become.

So in the interim, for those of us who by bilateral mastectomy have gone from a size C to an A cup – maybe this is a more appropriate way to view those lemons.

Couldn’t hurt. Might help.

Keep laughing. Keep swimming. It’s all we’ve got.

Moving at our OWN pace

Published on July 10, 2013 by beatingcowdensLeave a comment

Two weeks ago today we left for the last day of school. Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do. Our first mandatory stop is swim practice at 5:30 PM. So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

This morning I woke when my body told me it was time – somewhere around 8:15. What a blessing to open your eyes because you are ready.

I tended to the garden. I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini. I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea! — Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift. I understand its not “the norm,” and I AM grateful. But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

The rhuematologist confirmed that the Celebrex is necessary. On the up side she said, at least the liver seems to be handling it well. Yep, on the up side I need to worry about my almost 10 year-old’s liver? So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex. Take her off. Leave her on.

I love them all, but ultimately the pain decides for us. This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees. Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it. And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones. Did I miss my calling somewhere along the line? Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left. A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better. Not really at all. So she said, definitely get an MRI.

We are on it. 11AM Saturday. We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP. She expects they will find something. I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk. Better since the shredding is over. I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up. I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile. I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip. Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2. Obviously I still have a little more work to do down here.

Monday I went for my MRI. The one that checks my spleen. Next Tuesday I have the appointment to find out if I can keep it. Already covered the endocrine surgeon, the gyn oncologist, the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits. It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world. It will be a long week – again. So for today, I will try to slow it down. The sun is shining. It’s July. And we don’t have to go to work OR the doctor today!

My Young Teacher

Published on June 15, 2013June 15, 2013 by beatingcowdens2 Comments

As I was getting ready to say goodnight to Meghan a few days ago, she was visibly upset.

During our conversation I learned that she felt the cleaner I had just given her for her face had made the small bumps she has (courtesy of Cowden’s Syndrome) more noticeable than before.

I didn’t see it.

I look and I see my beautiful daughter – radiant inside and out.

Cowden’s affects the skin, and sometimes we get these obnoxious small bumps in all places you would never want them. Dermatologists with little experience with the syndrome don’t recognize that each one is in fact a tiny benign tumor, in the hair follicle, causing inflammation.

She is almost 10. She is 5 feet tall. She has fantastic hair and a great attitude about life. But, like any girl in this society she gets self conscious about her appearance at times.

So, in my effort to reassure her that her “bumps” were most noticeable to her, I showed her my legs.

Both legs are riddled with bulging, pulsating, colorful varicose veins. I have had 7 surgeries to keep them under control and eliminate the pain that goes along with them. I have over the last 2 years lost about 35 pounds. They just don’t let up.

I told her how self conscious I am about my legs. I told her how hard it is to wear a bathing suit, or shorts. I told her that I have only bought my first shorts in over 10 years in the last 2.

I know now what I didn’t know then – that these relentless varicose veins are likely a credit to my Cowden’s Syndrome, and the same path that led Meghan to that pesky AVM in her knee – a generation earlier presents as these veins in me.

She looked at me, pointing out my own insecurities, and she said Mom, you have to understand – it looks worse to you. And you have to remember, “Some people only wish they had legs… or legs that work.”

And there it was. My girl again.

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears…” – Laura Story

We took the iPad. We looked at pictures of veins. We looked at pictures of acne. We looked in the mirror. We hugged.

Sometimes its so hard. One battle after another on this journey.

I don’t know that I could handle anything so gracefully without my young teacher.

Mother, Wife, Teacher, Advocate

Published on June 3, 2013June 4, 2013 by beatingcowdens1 Comment

First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.

Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.

I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.

By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.

In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.

In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.

In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.

In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.

Then – just about when I was ready to turn 30 – we had Meghan.

Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.

In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.

In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.

In my 30s I learned how to balance two full time jobs, as a mother and a teacher.

In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.

In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.

In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.

In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.

In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.

In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.

In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.

In my 30s I learned what it was like to hear the words “You HAD cancer.”

In my 30s I learned which body parts are “extra.”

In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”

From mousy to mouthy.

From school teacher to Mom.

From “victim” to advocate.

All these things make me who I am today.

So much has changed, and yet at my core, my heart – I am the same.

I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.

I know life is not fair.

I know God is Good.

This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.

I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.

Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.

So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.

This is really how I view the race against Cowden's Syndrome — This is really how I view the race against Cowden’s Syndrome

Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.

I do the best I can to show her that its important to stand up for what you believe in.

I think she gets it. I know I do.

The 30s have been a ride, and I still have a few more months to go.

In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.

If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.

https://beatingcowdens.com/2013/06/04/howard-works-to-put-a-stop-sign-in-a-deadly-staten-island-intersection/

Advocacy. Empowering. Invigorating. Much more fun than lying in wait.

We have to keep our energy up, standing up for what we belive in while we are “Beating Cowden’s!”