The Arrogance Epidemic

Published on May 19, 2014May 19, 2014 by beatingcowdens2 Comments

Truly. Under diagnosed, and under treated. Spreading wildly. Seems especially prevalent among experienced medical professionals.

Not all are affected. Some are immune. Some resist with all their might.

Some embrace the arrogance. They seem to enjoy spreading it to those around them.

Others hide the arrogance, carefully and efficiently. Until the moment they are challenged. Then they unleash the beast full force.

We met again with the thyroid surgeon today. Two weeks ago we requested an appointment because Meghan felt something in her neck. I have learned from experience not to question Meghan. She has proven time and again to have an awareness if her body that defies explanation.

Two weeks ago he felt her neck and declared the lump she felt to be a salivary gland. He said some small lymph nodes surrounded it, but when we came back in two weeks it would all be gone. He said it with a good amount of authority- but not arrogance. He reminded us of her clean pathology report. He directed us not to worry.

And maybe we would have paid it no mind, except that’s not how life tends to go around here.

So, three days after the surgeon declared the “salivary gland” in her neck, we ended up inpatient at a local hospital with an attack of what ended up being severe gastritis.

While they were sorting themselves out, the pediatrician (who is as far from arrogant as they come,) remembered feeling the neck a few days prior. He had deemed it a lymph node, and figured while we were there he’d have a colleague, a hematologist/oncologist give it a feel. She deemed it a lymph node too and sent Meghan for ultrasound.

Just sitting around the hospital with tons of time as they tried to figure out the root cause of the GI pain, we were amenable to a neck ultrasound.

Now I am not taking sides- I have experienced great sonograms and horrendous ones- and witnessed them- in the best and worst locations. So I take reports as point of information, and never shun clarification. But this one clearly said lymph node- almost 2cm. Subsequent blood test ruled out the salivary gland theory as well.

So Thursday, after we were discharged I contacted the surgeon’s office. We had an appointment today, Monday the 19th. I spoke to the staff. I sent the ultrasound report. I asked them to schedule a sonogram at their facility for us to compare the one we just received. I figured we’d see the doctor and then have the sonogram.

Except as we entered the exam room he was agitated. Looking at the ultrasound report clearly for the first time, he said,”this must have been taken before the surgery.” Seeing it was Meghan’s report I interjected- “No it was taken Thursday the 8th.”

Enter arrogance. I swear his whole demeanor changed and it was like the arrogance bubbled up from his toes.

Now I will be honest- I don’t have a history of playing nice in the sandbox when I am pissed, and I don’t do arrogant well.

So, I may not have been the sweetest. But two weeks ago he was very concerned if she’d had fever, or vomiting. He made it a point to weigh her. Now- she spent 6 days in the hospital and no scale? Somehow I let that go.

What I couldn’t let go was his statement that there was nothing in her neck that was enlarged. See, you can tell me there is nothing to WORRY about. That I will take happily. But you can’t tell me nothing is there. Because 2 doctors an ultrasound my daughter and my own fingers tell me there is.

So we’ll get an ultrasound and then I’ll call you tomorrow to tell you nothing is wrong.

From your arrogant lips to God’s gentle ears…

So they had the girl, who just made her way back to school after a week in the hospital wait for three hours. We made it home around 7.

I know the treatment for arrogance when it overtakes common sense. Time to be done with it. A new consult has been established but we wait- so as not to cut off the nose to spite the face…

In the mean time I know we are not the only ones. There are so many good medical professionals. There are so many who take the time to think, and care, and treat. And then there are others.

The problem with Cowden’s Syndrome is the sheer numbers of doctors we see. The problem is hard to avoid.

Plus- as my grandfather once told me- I can be a little difficult to work with.

It’s all about my girl and whatever she needs….

The Productive Struggle

Published on May 12, 2014 by beatingcowdens3 Comments

Tomorrow I was scheduled to attend a professional development workshop entitled “The Productive Struggle.” I was kind of excited to go, as it sounded like quality PD right up my alley. “The Productive Struggle” is supposed to focus on helping students find their way through the rigorous problems and questions of the Common Core Learning Standards (CCLS.) And regardless of your opinion on standardized testing, when you break down the basic principles of these standards to their center, there is much value, and much to learn.

As a math teacher I like to focus on having students “Persevere to solve problems.”

This is in no way as easy as it sounds. Children are programmed to wait. They want the “right” answer. They fear trying and making mistakes, and learning, and trying again.

As a teacher it is my job to give them the skills they need to solve problems. I need to make sure their knowledge of math is broad. I need to tap off the skills their classroom teachers have taught. I need to set firm boundaries and standards for not giving up. Then I need to step back and let it happen.

Some days it is like a well rehearsed symphony. And other days it sounds a bit like an early childhood music class. But I try, and try again, and we make progress. Because giving up is not an option.

I have had some time to think, being cooped up here in the hospital this last week. And tonight it is easy to understand while I am glad to be by my daughter’s side, I am sad to miss any lesson in the “productive struggle.”

In many ways it is what is missing in our lives as patients with Rare Diseases.

Follow my logic, using my Meghan as an example.

So Thursday she woke up vomiting bile, and in tons of pain.

Virus? Nope.

Flu? Nope.

Terrible reflux, awful stomach cramps.

Appendix? Nope.

Fever, back pain.

Kidneys? Nope.

And so it continued, and still continues. We have met many nice, well intention-ed doctors and residents. And we have met a few that should really use their intelligence to become researchers and stay far away from people.

But 5 days later my daughter still sits with stomach pain, difficulty eating, and some pretty significant GI issues.

We have had ultrasound, CT scan, and countless lab tests. Tomorrow she will have endoscopy at 2 PM.

Some of the medication changes have been beneficial. And we may see a slight decrease in the severity of her pain tonight.

But, what is the root of the problem?

She didn’t develop GI issues so severe they require a lengthy hospital stay without there being any connection to the rest of her body.

I have a 4 inch thick binder with medical history. It reads as a chronology of 11 surgeries, several hospitalizations, outpatient procedures and more. There is lab work, sonograms, MRI reports. I actively cataloged the whole thing by date. And I brought it. And I offered it to the doctors.

And then I took it home. No one even laughed at the cartoon on the cover. I’m not sure it was ever opened.

See the problem we have, Meghan and I, and so many others, transcends Cowden’s Syndrome.

The problem is that most practicing doctors have never encountered, experienced, or worked through the “Productive Struggle.” So when a tough case hits them – they only do what they would normally do. And when all those tests are fruitless, instead of thinking outside the box – they assume OUR box is broken.

Meghan and I went through the chronology of the last year together last night. We spoke about the AVM on her hand. We continued through the MRIs that exposed her to extreme amounts of gadolinium. We talked about the two rounds of heavy metal chelation, and how even though she excreted significant heavy metal, the rebound effect triggered crippling migraine headaches. We recalled the neurologist, and the instant diagnosis of migraine without much history, touting them as “very common.” We remembered another MRI to make sure the brain was clear. We talked about the medicine for the migraines and whether it really worked, and how it kept getting raised every time she had another headache. Raised, not changed. We talked about the tickle in her throat that started in November, and the neurologist’s flippant remark that it might “just be a tic.” We talked about the neurologist telling us to increase the Celebrex to stop her last migraine – which it did, but it was never his drug to change to begin with and he never consulted the prescribing doctor. We talked about the thyroid nodule, and the subsequent biopsy and thyroidectomy. We talked about the surgery and the hospitalization that followed with GI issues in February. We spoke about the throat clearing “tic?” that we had hoped would resolve after the thyroidectomy. Then we spoke about thyroid hormones, and what having a body in a hypothyroid state for months can do. We spoke about the ENT and his determination that there was inflammation in the nose. We discussed his nasal spray and admonition to double the reflux medicine.

And then, after ten minutes of talking out the medical highlights of the last 10 months we realized NO ONE had asked about any of that.

It was like she is here being treated for a totally separate problem as a kid who “happens to have” Cowden’s Syndrome.

So they order their tests. One at a time. And they watch and wait. And we go for ultrasound and CT scan. And we change-up some medications.

But no one asks what the effects will be of her stopping Celebrex. No one asks why her body required such a dose, even as I start to see the initial effects of the NSAIDs being totally our of her system.

They come in and tap her belly. It still hurts in the same spots. But that’s not what they want. They did what they know. Now they want it to be better.

I have to be here with Meghan tomorrow, but there are a few of them that could stand to attend the PD on the “Productive Struggle.”

Goodness, work for it people. It’s not always easy.

But she’s young. And she’s bright. And she’s frightened. And she’s worth it.

Passing time….

Published on May 9, 2014 by beatingcowdens6 Comments

So here we sit. Again. For the second time post thyroidectomy, we are in the hospital. The girl doesn’t feel well. She just doesn’t. End of story. But, not too many people seem ready to listen until she’s in a full on physical crisis. Even then sometimes the numbers are frighteningly low. Yesterday she knew. She NEVER tells me to stay home from work. She KNEW. And my pediatrician heard it in my voice. She was admitted soon after he saw her. He wanted it to be the flu. In some ways I did too. A little Tamiflu and some rest. Buts she’s negative for flu. No real surprise. Too simple a diagnosis for my girl. Since her surgery in February, her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3. Enough thyroid hormone and the TSH decreases. Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time. I barely remember my own battle with thyroid hormones over 20 years ago. The veterans of this surgery tell me 6 months, a year… I get it. I do. But then there is the reality of watching your kid feel crappy every day. The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted. And then I get impatient. To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck. We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever. She never gets fever. Not really. And yesterday it was 102. Today around 100. No answer why. Not even the White Blood Cell Count gave a clear indicator. And the reflux. Painful. Like fire. Lack of desire to eat much of anything leads to weakness. And the throat clearing. Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues. The medical equivalent of robbing Peter to pay Paul. The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI. Girls can hope. So I sit. We sit. Waiting for answers to questions. Waiting for answers to more questions than we will ever get. But we are hopeful. Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

It’s not a sprint… It’s a marathon

Published on April 22, 2014April 22, 2014 by beatingcowdens3 Comments

I’m not a runner. At least not in the traditional way my sisters run. I don’t really run unless I am being chased. Tried it for a while but the knees and the back weren’t interested. So the only running I do is from appointment to appointment.

I guess I run- in a metaphorical sense.

This has been a busy week at our house. In addition to the host of emotions Friday, we spent the earlier part of the week addressing mandatory appointments – as it seems we do with every single vacation. It’s old I tell you. It’s old.

Monday was physical therapy, and then additional genetics for me. THAT will be a follow-up in and of itself.

Tuesday was our Integrative Medicine doctor on Long Island. The one who listens carefully and THINKS about my child before making a move. He ordered a slew of tests. He is concerned that ALL food seems to be bothering her stomach to some degree. But, he didn’t rush us out to a GI. He knew we’d get brushed off. At 5 foot 2, and about 100 pounds, my tall, thin, beautiful girl is hardly the poster child for malabsorption. But he knows me well enough to know that I am overloading her with nutrient rich foods to compensate.

We had a wonderful, long talk about nutritional cleansing, and how I would have given my eye teeth for products like the ones I use now to have been on the market 9 years ago when I began my journey with Meghan. He will look, and sample. We will talk.

But, he no longer blames one food for Meghan’s pain. He thinks the balance of her gut, from years on edge – needs some help. He has suggestions. We will wait for the lab work. Half done last Thursday – the rest tomorrow. Then we will talk. On the phone. And we will make a plan. Have I mentioned how nice it is when you have a doctor who is a fully compassionate human?

And Wednesday there was chaos. A 9:00 for me at NYU with my oncologist. She reviewed my MRI to tell me the spleen tumors are growing – slowly. But, they can stay for a while. Whew! And the cysts on my kidney I forgot all about – stable as well. WIN!

And then there was Sloan for Meghan. Blood work first. Then a follow up with the surgeon who cleared her from the thyroid with no need to return again. Of course even after waiting almost 2 hours for that appointment – the blood wasn’t in. And our endocrinologist was “otherwise engaged” and unable to see us on a Wednesday. So rather than come up twice, we opted to have him just review the blood work.

Then we squeezed in a visit to the ENT who took her tonsils out- hoping he could shed some light on 6 months of throat clearing. We left with the assurance that he had no definitive diagnosis, and he doubled her reflux meds and prescribed a new nasal spray, for inflammation in the nose. That he wasn’t sure was allergy related… I have to call in 2 weeks. Anyone picking up a trend?

The call from the PA about the AM lab work came around 4:30 while Meghan was at swim.

“The thyroid numbers are essentially unchanged, so we are going to raise her medication.”

Me: “How could that be? you raised her dose 6 weeks ago when the TSH was 10.69.” (reference range high is in the 4s)

“Obviously she needs a higher dose.”

“What was the TSH?”

“We are going to raise her dose to 125mcg” (Essentially my dose)

“WHAT WAS THE TSH?”

“The doctor feels this will help get her numbers in range.”

“WHAT WAS THE NUMBER OF THE TSH?!!?!?!?!??!”

Finally…. “10.54”

Me,” Down only .15 in 6 weeks? What is the problem? Did you test her T4 and T3?”

“Only the T4 and its normal.”

“Why not the T3?”

“It’s not relevant.”

“REALLY? Why?…” After no response I continued,”When you have a patient not responding traditionally I would think that you would run every test to get the greater picture.”

“We don’t believe in T3” (To which I actually laughed. It’s not like it’s Santa Claus or the Easter Bunny!)

“What do you mean you don’t believe in it? Obviously Meghan is not absorbing the synthroid and there has to be a reason. I think we need to start investigating before she is hypothyroid for too long.”

“Well, Mrs. Ortega I think you and I are saying the same thing. She needs more medicine.”

“No, I am saying let’s figure out WHY the medicine is not working. You are saying to continue to raise the dose of what is NOT working without looking at possible reasons why.”

“Well we will see in 6 weeks.”

Yep. And for 6 more weeks she will drag her exhausted bottom around – so hypothyroid I know I would barely function. Hopefully by then I will have found us an endocrinologist willing to accept that there is no “box” Meghan will fit it. There is not rule her body will not defy. I am appalled that I am supposedly with the best of the best. Leaves a scary feeling in your heart.

Onward to the doctor search.

The mail arrived this morning, as we were headed to the orthodontist. There was a script for Meghan’s next thyroid test. There was no copy of the labs. They HATE it when I ask for the labs. So I called and insisted they be EMailed to me. It was quickly clear why they didn’t send it, as another test was disconcertingly out of range. A quick forward to my LI doctor… and we wait.

As we headed out to the orthodontist the mood was light. Meghan was ready to take impressions for the plan to remove the braces next month. And when they called me o the back to tell me her bite had “over-corrected” and it would take some time to fix – I just about took the deep breath I needed to speak quietly.

Basically I was being told that because my daughter did EVERYTHING she was told to do religiously she had done TOO good of a job. Now her overbite had been corrected into teeth that meet to closely. She stared at me. I attacked a bit. I asked why they thought it was OK to month after month make promises that were not to be fulfilled. Perhaps it was ok for her to get defensive. Maybe I was attacking. But, I don’t understand why you say so much to a child. From the beginning she was flat-out promised her teeth would be ready before her 5th grade graduation. Now she is getting a MAYBE for September? Don’t misunderstand me. I want them on until they are done. But my issue is that SHE sees the doctor and his staff alone. THEY say whatever without me being there. It is NOT ok for you to INTEND to be ready for impressions, and then have things go so wrong in 5 weeks that we appear to be set back 3 months!

The doctor obviously got the message I had had enough. I like him. I really do. And he came out to say to me he …wait for it… had NEVER seen anything like this. How UNUSUAL it was. And how 99% of the time things run according to plan. He apologized. I reminded him that I had already told him several times to be careful with my girl – she’s not a “typical” case of anything. I asked them all to watch what they said moving forward. But it was too late.

To Meghan the message was clear. She was once again the “unusual” case, and once again. And to make matters worse this time her GOOD behavior may have contributed. What a tough message for any kid.

This is the part where I caution you – friends and family alike to withhold any comments about how it could be worse. Or how its good the teeth are set right before the braces come off. Or your friend/cousin/brother/kid had their braces on for 5 or 6 or 7 or 8 years and she should be happy it will only be 2. Because really, at some point something should go her way. At some point when the orthodontist (who mind you she has been working with on appliances since just after she turned 7 (4 years in August)) says 18 months for the braces, that it should just be 18 months. Because that’s what happens to the “normal” kids.

We have not lost our grip on reality. I promise. We get it. But some days… some days I have to wonder where the limit is.

Some days when she complains that she just wants to be “normal,” and I try to assure her she is. I remember days like this at the orthodontist. Or the 2 days it took her to recover from a 3 hour outdoor play date earlier this week. Or the “fake spring break” that had more trips to doctors than anything else – again. And the follow ups that will continue in the weeks ahead.

I cried when we left the orthodontist office. I cried because I sometimes am just so frustrated at how much she is asked to endure. And she sat. Quietly. Until we got home. And she screamed a loud piercing scream. And we hugged. Because we know we are in this together. And we know no matter how bad it gets, not matter how tough it is – we have to keep on keeping on.

Tonight I stopped at the mall and bought these.

One for each of us. A reminder about the meaning behind all that metaphorical running.

The car got towed today. The old one. I think its dead. Permanently. We have an appointment to get the oil changed on the new one at 8 am. We’ll talk to the mechanic then.

Then there is that fasting blood test at 10:15.

The whole identity theft thing seems almost ages ago.

No wonder I don’t run for fun. Too busy running as a way of life.

No worries – We are BEATINGCOWDENS!

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!

Today

Published on March 19, 2014 by beatingcowdens1 Comment

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

Today homework is already done.

Today her stress level is low.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today. Today my girl feels good.

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

Today we are BEATINGCOWDENS!

Rare Disease Day 2014 – Through Meghan’s Eyes

Published on February 27, 2014 by beatingcowdens11 Comments

Yesterday, our local paper published an article about Meghan and Rare Disease Day.

http://www.silive.com/news/index.ssf/2014/02/post_738.html

Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her. She was so thrilled by his genuine nature, and his true interest in her. Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!

Meghan chatting with Borough President Oddo!

Today, Meghan addressed the school about what it was like to live with a Rare Disease. She spoke eloquently and passionately. The students were phenomenal. She was exceptionally BRAVE.

This is her speech.

Living with Cowden’s Syndrome

Every day I have pain. Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure.

Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide. Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease. There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments. Treatments and surgeries can be helpful, but they don’t fix the problem permanently. Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.

We chose the movie BRAVE for tonight’s movie night on purpose. When you have a Rare Disease you have to be brave. Individuality is very important. No matter who you are, EMBRACE it and be BRAVE. Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE.

Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL. All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE.

Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer. Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin.

I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too. The support I get from my family is incredibly inspiring. I REALLY want to make more people aware, as you can see.

All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.

When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this.

Be KIND, be AWARE, Rare Diseases are EVERYWHERE!

And then – as if I wasn’t proud enough…. she put this video together all by herself….

Such a proud Mom! Spreading the word…. LOVE this kid.

Can’t wait until tomorrow for MOVIE NIGHT!

And the body says… SLOW DOWN!

Published on February 23, 2014 by beatingcowdens5 Comments

So it’s almost 2 AM on Sunday. And I have to say, I didn’t see this one coming.

This is the part where I remind people over and over that just because you CAN live without a body part, doesn’t mean your body doesn’t miss it when its gone. I mean we were made in one piece…

So the recovery was going pretty well, but that’s mostly due to her feisty determination.

But there is a point where you look back over the last 9 days and consider a few major things. That point came at about 4, and 5 , and 6 this afternoon as she was violently and quickly vomiting herself into dehydration.

If you consider that there was the stress and worry of HOW we were going to get to the surgery, then the brief pleasant stay at Ronald McDonald House, followed by a 4 hour surgical delay, coupled with a less than smooth hospital stay that had its share of communication issues… you start to get a sense of the stress that has been this February “vacation.”

Sorry we didn't send a post card, but it was a blast ... — Sorry we didn’t send a post card, but it was a blast …

Really it extends way farther back than that… but rather than bore you again with all the back story I’ll stay current.

So on the 13th the thyroid came out. It was a three hour procedure with lots of general anesthesia junk for my pretty organic girl. Then there was the whole removing an actual PART of her body. And then there was the introduction of the synthetic replacement hormone. And there was lots of fidgeting with calcium levels. And there were narcotic pain meds for a few days too to keep the edge off.

And at some point around 4 today her body had had enough.

I love when Meghan vomits and people say, “Is she sick?” And I say “nope.” Rarely, (knock on wood – NOW please) does Meghan get a “stomach virus,” but she’s not a stranger to vomiting. She vomits when her body has had enough.

And today, her stomach hurt. Her knees hurt. Her hips hurt. Today I couldn’t keep the pedialyte in cause it all happened so fast. And, since there’s a first time for everything – we actually had to go to the ER for fluids. Except she’s Meghan. And she’s only a bit over a week post op. And they just wanted to be careful… so she’s asleep in the bed. I am typing away as I won’t even attempt to sleep until after the 3 AM meds.

And after the ER was over and we came up to the floor for a bed – in a place we have spent some time before- we passed by the NICU where she started her life in 2003. While I was reflecting I looked at our nurse and thought she looked a little familiar. Once she told me her name I was incredibly grateful I had been kind to her son when he was in my 5th grade class some (AHEM 13 – or more) years ago. You never know when you’ll need Karma on your side…

And now this poor, lovely nurse was left to contend with my daughter, reading package inserts and discussing medications before they were given. Meghan talks a lot. But I didn’t feel guilty about that part (GRIN.)

So the fluids kicked in and she began to perk up. She had time to share with the doctors and the nurse her denim ribbons, her Cowden’s card, AND her movie for RARE Disease Day. They want us to bring them some ribbons for the floor.

Me, I got my nutrients in my – thank goodness I always stuff a meal bar and an EShot into my bag… ALWAYS. That knocked that pounding headache right out.

She bounces back. Quickly. But sometimes a little too well. I have to watch her. Determination can’t do it all. The body has to help too. And as strong and tough as she is, we all need to be reminded that, well she has this RARE Genetic Disorder called PTEN Hamartoma Tumor Syndrome… or Cowden’s Syndrome… and well, even though we may not always want to admit it – that darned syndrome can make life a little extra tricky.

Thyroid PREvivor!

Published on February 21, 2014 by beatingcowdens8 Comments

The phone rang at about 7 PM. It’s Friday night. I did not expect the call to be from the nurse practitioner at the endocrinology office that manages Meghan’s care.

Wednesday we went in for a surgical follow up appointment. The incision is healing nicely. She is still sore but cleared to return to school Monday… and swimming too. While were there, they asked for some lab tests to be rerun.

Calcium levels which were botched Friday before discharge needed to be looked at again. And the parathyroid hormone to make sure it was still functional.

Before we left the facility, we received word that the calcium levels were actually high. No need for me to even start ranting again.

We were advised to keep her on the current supplementation level for 4 weeks, then wean her off and revisit the surgeon in 8 weeks. We would also see the endocrinologist at that time. Although, endocrinology would be ordering lots of labs in the mean time. All of this I understand.

Except, when the nurse told me she was calling, at 7 on Friday night (when the results from Weds. labs were in the system on Weds) to tell me to keep Meghan on her baseline calcium (the Isagneix Calcium she has taken for almost a year) and lower the supplemental pills they gave from three to two.

Seems logical. EXCEPT when we were discharged in that debacle Friday night they altered the script from 3 to 2 already. So so we go down to one?

The nurse stuttered, confused. I still don’t think anyone understands what a mess they made out of her care on Friday. No, she said. We will rerun the calcium in a week. Anyone want to wager that it will be too high?

As she went to hang up I asked about the pathology I had been waiting on pins and needles for. Almost as an afterthought, she said she didn’t think it was in. Then, “Oh, it’s right here… want me to send it to you?”

Um, YES.

“Everything seems ok, do you have a fax?”

YES!

And that was the end of the conversation. Left to read the pathology report on my own I pored over it as best I could. Confused that it was date stamped 6PM on Weds…. and I found out it was in by accident. But, whatever…

So without the aid of a doctor, and with my somewhat well developed medical vocabulary, everything looks to be

BENIGN!!!!

There are things about it I don’t like, of course. Like that some of the “lumps” are referred to as nodules, while the three problematic ones are called “tumors.” The largest of these tumors measured 2.4 x 1.3 x 1.3 cm, and the others were not that small either. No wonder this kid was choking! There is “hyperplasia” all over the place too. But it seems like the bottom line is, we got in in time.

Cowden’s we BEAT YOU to it!

Of course there is no crystal ball. There is no way to say for sure that it WOULD HAVE become cancerous, although I think we all know the reality. There is no way to know if it could have stayed in a little longer, but I like to think eliminating the anxiety over the constant FNAs, which incidentally had caused quite a mess of scar tissue according to the surgeon (THANK YOU COWDENS!) will be the better choice in the end.

It is ~~easy~~ easier, to make decisions about prophylactic organ removal when it is your own body. You just do what you have to do and move on. But my husband and I had to make the conscious decision to remove something from our child’s body. Can she live without it? Absolutely. But just because you CAN live without something doesn’t always mean you should, and it doesn’t mean that removing it is without consequence or effect.

As a new mastectomy patient I read lots of stories of brave young women who had decided not to spend their lives waiting for cancer to get them. They had taken steps, usually to get ahead of BRCA1 or BRCA2. I immediately admired each of them. They somewhere along the line coined the term “PREVIVOR.”

https://www.facingourrisk.org/FORCE_community/previvors.php

Primarily used to deal with the risk of hereditary breast and ovarian cancer, I think the term has a broader reach. My girl does not need to be a thyroid cancer survivor. She is a PREVIVOR. She got there first.

For this I am thankful.

BEATINGCOWDENS!

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

Recovery – the real deal (Phase 2)

Published on February 14, 2014February 14, 2014 by beatingcowdens7 Comments

It was almost 11 last night when we were cleared to leave recovery, and taken to a bed on the Peds floor. Dad had to leave to head back home before the next round of snow began. After all, he needed to have a car ready for our (hopeful) Valentine’s Day discharge.

So we settled into a tiny, awkwardly laid out room. trying not to disturb a roomate who likely would have preferred not to be awoken at 11 to share a room with someone she didn’t know.

By that point I might have been a little difficult. (I know that is SHOCKING!)

But as we settled into the room it became apparent that there was no place to walk safely. Some rearrangements were made, and the reality that she couldn’t possibly see the TV was softened by Amazon Prime (on demand) on the laptop.

She was hungry. At this point she was close to 24 hours with no food. I try not to let her go four hours. Her stomach needs constant gentle reminders it hasn’t been forgotten to keep it from getting angry. They said soft and clear. We tried apple juice. Then they offered an italian ice with soy protein. Not so much. Another juice I was told. And I should have trusted myself.

Soon after came the familiar green face from the child with a body full of toxic anesthesia crap, AND apple juice – which just isn’t on her list of beverages.

She is always my angel girl. Even post op – she got herself to the pail before her body forcefully removed its toxic contents.

I took the opportunity to change the gown and bed sheets, because – why not? And by midnight she was on my laptop watching “The Hunger Games.”

They said clear liquid. I said ginger ale and gluten free pretzels. I win because I don’t ask. And she started to perk up.

Pain medicine in place, she enjoyed the movie. Except the blood draw. Which fortunately was through the IV. Then again an hour later. (Good thing she wasn’t asleep) only to find out her blood sugar was crazy out of whack. The finger stick brought it into a much more normal range. Thank goodness!

By 2:30 there were actually 5 uninterrupted hours of sleep for my exhausted girl.

She awoke at 7:30 immediately remembering the pain of having your throat slit open, and a small lumpy organ removed. Today things were more stiff. All the local anesthesia gone. She was hurting. And its a hurt I remember. So it broke my heart worse. You never realize how many things you use your neck for, until…

Brave girl. Held it together. Had some more of her pretzels and ginger ale, and even some of her chicken breast I brought.

We wheeled and dealed and got her to agree to a nap after her second movie. And so she rests now.

Calcium levels keep us here. Wondering and working to determine parathyroid damage. The synthroid has begun.

The doctor will set us up with restrictions, rules, and orders. When he’s able.

For now our chart reads “Pending Discharge.”

We are ready, and I am behaving…. I promise.

Ten years ago we spent Valentine’s Day in the hospital. And here we are again. What a decade. It’s not glamorous by any means – but I am still with the loves of my life, and that makes me a lucky gal.