Conditions and Diseases – Page 7

I STILL HATE CHEMISTRY!

Published on October 16, 2013 by beatingcowdens3 Comments

I am dating myself I am sure, but the year I was to sit for the Chemistry Regents Exam in NYC, someone swiped the answers. The morning of the test they were published in the NY Post. I remember sitting in my high school cafeteria waiting to take the exam, only to find out it had been cancelled. You know thinking back on that story, I guess I understand now why I have never won the lottery. That was probably one of the “luckiest” thing to happen in my life. I never did have to take that exam.

Except now, 25 years later, I sit poring over a piece of paper full of words I don’t understand. I am brought back to the periodic table, and left to wonder if maybe I should have paid a bit more attention in class.

I have actively picked apart each of these levels since being handed the report on Thursday. I have read the descriptions of where this toxicity could have originated from. I have made the few moves I could understand, and the old aluminum cookware hit the recycle bag, and the new stainless steel – to supplement the few pieces we did have – arrives this week. The old cookie sheets are gone. Parchment paper replaces aluminum foil for cooking. But what about the other ones? What about the ones I can’t understand? Or worse, what about the ones like “gadolinium” that I CAN understand, but I just can’t fix?????

This printout is old now. The new urine sample was picked up Friday morning, and hopefully someone in a lab somewhere is generating lower numbers and shorter bars. But, I won’t know that for a few weeks. So I am left alone with my worries, and my thoughts, and my sick kid.

I suspect if Meghan could tell the world how she feels, this might be the sentiment. She is constantly conflicted with feeling like crap, and being pushed to keep on. She not only plays in pain – she smiles and laughs through it. And no one who sees her outside of this house would typically have any idea of the agony she endures each day. She works hard to hide it all. She has told me, in her very own words, that “no one would like me if I told them how I really felt all the time.” I would like to tell her she’s wrong, but she’s not.

And she is the bravest kid I know.

The sore throat started Friday, hours after the chelation, and exactly the same as last time. On Friday she pushed herself through gym class because she just wanted to be “normal.” By Friday afternoon she was shot – too wiped out to swim. She could barely swallow. By Saturday morning her nuscles ached along with her throat. No swimming Saturday either.

We barely left the house all weekend, except for a quick strep test Sunday that was negative.

The friends she wanted to invite over – postponed.

This was no coincidence. This was twice in a row she was knocked on her *ss after chelation. This was her immune system saying,” WHAT THE HECK WAS THAT?” To the toxic storm unleashed by the chelating agents. We have kept her well hydrated in hopes much could be excreted… but we will have to wait and see.

Early to bed Friday, Saturday, Sunday, Monday, Tuesday, and again tonight.

SHE HATES going to bed early – but has gone willingly.

She went home from school early today. No fever, but a clammy sweat. She just needs rest, and water, and rest.

The headache is ruthless. Even as some of the cold like symptoms start to subside, the headache does not want to quit. A week now. It leaves such a pit in my stomach I don’t want her out of my sight. I hate headaches. I especially hate wondering if the renegade toxins likely causing them are doing any other damage.

The doctor who last month said there was no way her symptoms were connected to the chelation recanted through an email today. He is now keeping tabs, giving me tips to keep her comfortable, keeping my resolve strong that this is necessary, and working on downward adjusting her dose for next time. More trips, more treatments… hopefully less misery.

I just can’t shake the image of a snow globe, and as we try to get the metals out we stir it all up. Some escapes, but the rest causes misery as it finds hiding spots again.

An in between it all life presses on. Laundry gets done. Bills get paid. Lessons get planned. Cars get exchanged. Files are kept. Clothes for the growing girl, are ordered. Floors get vacuumed, and washed, and vacuumed again. Groceries are purchased. Lists are made, and lost and remade. Tabs are kept on family and friends, and their health, and their struggles.

These are the every day tasks that keep me sane. On autopilot.

Dinners are missed. Meetings go unattended, Places I want to go – but, I just can’t right now.

You see I am having a battle with the Periodic Table of Elements, and I need to study. I am the front line.

So, I take my IONIX, and my t+chai, and I am thankful for energy and stamina to endure.

Maybe missing that regents wasn’t so “lucky” after all. So as I study some these next few weeks – please know we haven’t forgotten you. Our prayer list is long. We don’t want you to leave us out, or not to call. Don’t feel badly about overburdening us. We NEED to be in your lives. We WANT to be in your lives.

We are in touch enough to know that “Everybody has SOMETHING!”

from "Mommies of Miracles" — from “Mommies of Miracles”

Tick Tock

Published on July 26, 2013July 26, 2013 by beatingcowdens4 Comments

I actually watched it happen. We were walking up the hill to swim practice last night. Then she was limping.

She handed me her bag – struggling to balance. Before I could ask what had happened…

“My hip, my groin, the whole thing!” Gesturing near her hip bone and down her outer thigh.

I looked for a bench but there was none. She wasn’t interested anyway.

“We can’t sit – I will be late for practice!” Exasperated that I would even think she should stop walking while writhing in pain.

“Um, Meg – I was thinking you shouldn’t go to practice.”

“No way! We are here. I am going, and besides- the only time I feel close to normal, like everyone else – is in the water.”

We took away soccer.

We took away dance.

We can’t take away swimming.

So I made sure she asked her coach to help her stretch the hip. She stopped only once during the hour and fifteen minutes. I am sure I could not have kept up.

As I walked, and she limped back to the car she said it was, “not so bad.” And, she was “glad” she practiced.

Dedication. Admirable. Torture.

After the shower it all fell apart quickly. She froze almost completely. We rubbed it, and elevated it. Within an hour she needed help walking.

She got settled into our bed and tried to rub her hip.

The yelp indicated the pain on her hand and wrist has not subsided either.

As we got her comfortable I thought forward, about the week to come.

I emailed her genetecist and her oncologist this week. I attached photos of her hand. I attached the copies of the MRI report. They responded inside of a few hours.

Biopsy those lesions. On this they agreed. Cowden’s Syndrome -PTEN Hamartoma Tumor Syndrome. Soft tissue tumors are common. The oncologist reminded me only one lesion was visible during her exam just 2 weeks ago.

I know. I watched the other one pop out as she cried out in pain during a shopping trip to Kohl’s. It wasn’t there. Then it was. Now it is. And it hurts too.

Tuesday we will see an orthopedist. Thursday we will see a hand surgeon. Two more doctors we didn’t plan for. Two more afternoons lost waiting. Two more opinions to contend with.

And the prevailing uncertainty that anyone will ever fix the problem.

She is walking a bit better tonight. That is encouraging. A nice afternoon with a friend. Conversation for me was easy and comfortable. Grown up talk – something I have craved, while the children swam in the pool. Almost normal for a few hours there. Almost.

The car is going to stay in the “car doctor” over the weekend. Apparently its condition has been downgraded.

Paperwork to begin a complaint with Better Business Bureau should arrive early next week.

Maybe I should give the CAR an ISAGENIX shake or meal bar. It might be more productive than what is being done to it.

Monday we should know more.

Monday we should also hear from the rheumatologist about her thoughts on the MRI.

Sandwiched in between concerns about family and friends alike. In some ways our lives are miles different. In more ways – they are exactly alike.

Patience. Worry. Anxiety.

Tick Tock, Tick Tock… that would be the sound of summer passing us by….

Forever- it’s all about perspective!

Published on June 25, 2013 by beatingcowdens1 Comment

Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation. New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.

Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.) Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.

There are some people she misses from her old school. There are some people I miss. There are circumstances neither of us miss at all.

This wasn’t the plan. But really, as I keep learning – we don’t actually get to plan everything.

Learning experiences. That’s what they are.

You never really know what tomorrow will bring.

Make the most of what you have where you are.

Trust your heart and your gut. If it feels broken, it probably is.

Reduce your stress. Eliminate toxins. Its good for the body, mind and soul.

No experience is wasted. No interaction is a loss. People come in and out of our lives, some for a season, some for longer – but always for a reason.

And now there is summer.

Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.

Thursday we visit Sloan Kettering again. Time for the thyroid sonogram. How could six months go so fast? And as the appointment closes in she starts to articulate her fears. They are the same as mine. I should know that she is smart enough to process. To understand that they are looking for thyroid cancer.

On Friday we see the vascular surgeon for a follow up, and then a genetics follow up. Meghan loves to visit the geneticist. She says, quite correctly, that he saved both of our lives. I remind her that she saved mine. She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.” Ever wonder what it feels like to be sat on by the ‘elephant in the room?’ Well, as I gasp for breath – speechless, I give her a hug. No empty promises to offer. I can’t. I won’t. She would see right through them anyway.

This is our life. This is how our summer begins, and between the two of us, it doesn’t really let up. There is little time for camp, or beaches. We will sneak in a few play dates. We will get away for a few days in August. She will read a few great books. We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.

This – this is why we need a life free of toxins.

This is why we eliminate unnecessary stress.

Cowden’s Syndrome carries enough stress of its own.

You see this will be our life – forever. And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.

Forever.

Forever is a long crazy concept. Forever – while trying not to plan too much. Forever.

Forever has this awful way of disappearing sometimes.

I used to think Pop’s vegetable garden would be around forever.

Well, actually I guess it is. I just grow it for him at my house now.

Forever. It’s all about perspective.

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.

The Grass is Green!

Published on May 29, 2013May 29, 2013 by beatingcowdens5 Comments

Sounds ridiculously cheesy I know. Sometimes the bad things are just crap. And some days just stink. But, not most of them. Really, if I think about it- just a few days now and then really stink. The rest of them seem to hold within them some lesson, some joy, some laugh, some memory – something that makes my spirit richer than it was before.

Don’t ever delude yourself into thinking things are perfect here. That would be a lie. We have our whiny, cranky, in each other’s way kind of days. But that’s not most of them.

Lots of rotten things happen to everyone. But lots of good things happen too.

Lots of rotten things happen when you have Cowden’s Syndrome. Sometimes the key lies in looking at things from a different perspective.

Every moment. Every meeting. Every diagnosis. Every doctor’s appointment. Every report read. Every bill fought for. Every new teacher. Every new friend. Every old friendship renewed. Every miracle. Every ordinary moment. They all bring us to where we are.

Maybe I have watched too much sci-fi with my husband, but to change any one thing, any event in our lives, could alter the course of our lives.

I won’t spend time wishing things away- certainly not the good, and definitely not the bad.

Sometimes the lessons hurt. Sometimes they make us cry. Sometimes, like when we say goodbye to dancing school, and all its emotional joy, coupled with insufferable physical pain, we get a little sad.

Then we say, if it wasn’t for dance, we wouldn’t have learned love of the stage. If it weren’t for dance we wouldn’t have seen a growth in confidence, and an ability to manage a growing young body. Losing dance is hard…

But if there wasn’t Cowden’s, and chronic pain, and an inability to deal with impact – would there be swimming?

Private lessons at a local college start Saturday. Regular practice begins the next month. She salivates when she gets near a pool. She just wants to get better and better.

New sport, new school, new friends, and old ones too. Same old pain. Same nasty viruses. Some things change, and some remain the same.

Sometimes I wish (quietly to myself) that life could be a little bit easier. Then I look at my daughter, and my husband, and my dogs, and my house, and I think – things are just fine right here.

We have each other – for the ups and downs- for the ins and outs.

They say if everyone had a few moments with everyone else’s problems, they would fight to grab their own back.

We are getting by. We are “beating cowden’s”

The grass is green enough right here.

Moving Forward

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

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

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

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

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

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

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

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

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

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

But a few things have really bothered me.

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

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

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

BUTT OUT!

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

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

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

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

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

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

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

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

In case you are interested…

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

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

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

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

All kinds of tests

Published on April 16, 2013 by beatingcowdens5 Comments

So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.

I have absolutely no idea if her assessment is accurate. I am only grateful that for one afternoon, her anxiety was lower.

Last night before she went to bed, we spoke a lot about testing, and my expectations for her.

As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.

So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.

Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.” This followed by a cheery, “Chill out – You got this!”

As she lay her head down, last night, and tonight, she repeated those words to me.

There really are so many teachers who “get it.” The kids are so much more than any number on a piece of paper.

It is such a challenge being on the parent end of things.

But, at the end of the day, these aren’t the tests that matter to me. Not really.

On Monday the 1st of April there were 13 vials of blood. On Saturday the 6th there were 15 more.

This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.

These are the tests that keep me up at night.

These are the tests she has no control over.

These are the tests whose scores really do matter.

Hormones, Thyroid, neurotransmitters, immune function…etc… etc…

The results for the school tests won’t be in until August.

Some time in the next week I will have to deal with this latest lab panel, and determine if we have any new answers, or just more questions.

Perspective is a definite reality check sometimes.

She will go to school and do her best, and I know regardless – she is already successful.

I only wish I could hold onto that same confidence, as I await these lab tests.

SHE Who Never Gives Up!

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

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

It says, “She Who Never Gives Up”

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

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

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

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

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

SHE advocates without ceasing for the needs of her child.

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

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

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

SHE doesn’t quit- ever.

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

Some people wish SHE would just go away.

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

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

SHE is not perfect, and never claimed to be.

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

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

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

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

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

“She Who Never Gives Up.”

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

Priceless!

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

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

Filling the car with gas- $50.

Traveling through the Brooklyn Battery Tunnel $13 roundtrip.

Parking for 4 hours – $25.

Two doctor Copays $20 each.

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

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

ABSOLUTELY PRICELESS!

So we cross small hurdles gleefully.

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

I will do everything in my power to consolidate them.

Cowden’s Syndrome WILL NOT run our lives.

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

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

Blessed- with my fake boobs

Published on December 9, 2012 by beatingcowdensLeave a comment

No, seriously – I mean it.

Yes, there is the occasional moment where I think the new girls feel a bit awkward, or unnatural. There is the occasional moment when I look in the mirror and try to remember what the old girls looked like, and what it was to have nipples instead of scars.

Then I get over it.

And I think about how comfortable and natural it was last night, as I held my exhausted daughter and she rested her head on this size A silicone that sits where my old boob was. She didn’t even hesitate. She didn’t mention it being weird or unnatural. She didn’t notice.

And my husband, who means it when he says over and over – “I am just so glad you are here.” And, I believe him.

I am blessed to have had great surgeons, a superb support system, and the “push” to say goodbye when it was time.

A year ago I still had more body parts. If I had left them all alone I could be dead now. But I am not. And the cancer is gone.