You Can’t Have a Rainbow Without a Little Rain

rainbow rain

As a young child a can remember hearing stories of rainbows in Sunday School.

This week I needed lots of reminders that I am not alone.  God keeps His promises.

Yesterday we saw Endocrinology at MSKCC in NYC.  They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid.  She was an angel – calm and patient.  I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now.  The things we learn through repetition.

It was obvious to me that the many nodules – well over 10 – are still there.  At least three are quite large.  I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.

We spent an hour waiting on the ninth floor, the pediatric cancer unit.  And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.

rainbow not thunderstorm

Meghan played on her iPad as I watched.  Chemo pumps beeping.  Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body.  Some sleeping, some resting, some running.  And their parents. Dark eyes.  Worry.  Terror.  Fake smiles.  Bitten up coffee cups.  “Count your many blessings count them one by one…”

“Mom, I am not scared of thyroid cancer.  I am only scared if they don’t catch it early enough.”  I knew what she meant. She went back to playing.

In the doctor’s office there was a moment for us to be relieved, kind of.  The nodules are slightly larger, but are growing slowly.  They are still in that same “precancerous” state, but we are not in imminent danger.  No biopsy right now.  We get at  least another 6 months out of the thyroid.

Then there were the other conversations.  The ones about hormone levels that won’t regulate on lab work.  The MRI that showed a pituitary “diminutive in size.”  The inconsistencies of these tests with her current development.  The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”

Yeah, and…

So he drew the labs again.  This time at “his” lab.  And a thyroid panel, and a few other things.

He’ll call me Monday.  Then I will find out more about “human physiology.”

At swim practice last night I met a mom.  She has an only child too, just about Meghan’s age.  And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night.  And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends.  There are no coincidences.  Of this I am sure.

And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,”  we dragged ourselves out of bed again.

rainbow snoopy

I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted.  As I crossed the bridge I had the sinking feeling that I didn’t have my wallet.  Back across the bridge.  Back home.  Back out.  An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed.  Into the $42 lot we went. We made it into the office at 10:03.

The vascular surgeon is uptown.  He has been inside of Meghan’s knee 4 times, so he knows her well.  This time we had less overall pain to report.  But, of course he never felt the pain was connected to the AVM anyway.  So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block  I had his attention.  The legs have different girth.  The left is undoubtedly stronger then the right, having been spared the AVM.  Do you take her for PT he asked?  Um… constantly.

Fortunately we love Dr. Jill!

We took her out of soccer and dance and put her in swimming.  There isn’t much else we can do.

Oh, and could you look at her wrist?  The one she hurt at the school carnival almost 4 weeks ago.  She was victorious at her quest to climb the rock wall.  Stubborn, competitive child.  But has paid the price since.

For a few days I told her to suck it up.  I admit it.  But it kept going.  Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened.  This one wasn’t quitting.  Dr. Jill helped us.  We tried a brace. Then another one.  Then no brace.  No better.

So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over.  I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.

He examined it for what seemed like forever.  Then he asked me who my orthopedist was.  I laughed out loud.  The one subspecialty we have NOT found – is pediatric orthopedics.  So he asked if she had a rheumatologist.  I said we were headed there July 9th.  He said try to move it up, and call him after I saw her.  She needs and MRI of that wrist.

“I don’t think it’s vascular…”  And after that we will get one of the knee – just to be safe.

There went two more days off the summer calendar.

40 blocks away was the geneticist.  He is the one we credit with saving my life.  And I credit the angels with placing him in our path two years ago.

We spoke at length.  He has more questions.  More research.  He has a theory.  He will call me.  He will send me the articles.  The conversation lasted an hour.  He is brilliant.

She hugged him and told him she wants to be a geneticist.  We have a friend for life.

The people training on the  new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.”  I don’t know why I find the system to be perplexing.  I should be used to it by now.

It rained tonight.  Thundershowers.  They have been happening a lot lately.  Maybe I need a lot of reminding.  The rainbows are there.  The promise remains.  Nothing happens by accident.  God’s timing is perfect.

6/28/13
6/28/13

Finding the Rainbow

My mom has always loved rainbows.  I mean she REALLY loves them.  She would take us all outside when we were younger to look at them after a storm.  She would sometimes pull the car over so we could see them.  I remember always knowing they were special.  But, like so many things in life I think I am only starting to “get it” now.

Rainbow

What a June this has been!

There has been rain and more rain.  It only started to feel like summer a few days ago.  And while I am sure we will all be complaining of the heat soon – it is nice to see some sunshine.

As I walked out of my house to make a quick run to the store tonight there was rain.  Lots of it.  I went back in for my rain coat.  I had to be ready to pack lunch for Meghan as we head to her appointments tomorrow.  So, I had little choice.

As I was listening to the all familiar sound of the wipers on the windshield, I found myself looking for the rainbow in the sky.  There was sun, there were clouds.  There was rain.  I knew I would find it if I looked.

I thought about these last – almost 2 years since the Cowden’s diagnosis.  I thought about the twists and turns and sleepless nights.  The days when I was sure the sun would never shine again.  Yet – somehow it did.

I thought of my husband.  My strength in tumultuous times.  I thought of how he began school 2 years ago this week, setting out for his electrical licensing exam, never knowing three short months later life would be forever altered with mine and Meghan’s diagnoses.

I thought about how the course that was only supposed to take a few months, and the test that should have been in early 2012 ended up being in January of 2013.  I thought of him trekking to school two nights a week, and studying every spare moment.  I thought of how flat out proud we were as he passed the written exam with ease.

Through tests, surgeries, scans, cancer, agonizing waiting – he persevered.I am not sure I could have kept my focus.  But he took it a step further.

Perhaps it was out imminent family health crisis, or maybe his own internal motivation, in June of 2012 he began his journey towards better health on Isagenix.

While continuing in school  and under extreme stress, he has managed to lose, and maintain the loss of about 45 pounds.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

He took the second and final part of the exam on June 4th.  The passing score came in the mail Monday.  Now all that stands between him and his Mater Electrician License is some tedious NYC paperwork, and undoubtedly some more fees…

As I looked for the rainbow I couldn’t help but think, that even though they are sometimes hard to see, and even thought the days are sometimes dark and cloudy –  they are there.  They wonder, the beauty – all perfectly placed to be appreciated.  If we look…

Tonight's rainbow 6/26/13
Tonight’s rainbow 6/26/13

I am so proud of my husband.  I am so grateful that he is so often the rainbow on that cloudy day.

My mother taught me to look for rainbows.  I get it now Mom.  I get it.

My husband helps me find them.

I am a lucky girl.

Thyroid sonogram tomorrow – 10 AM.

We’ll be looking to make our own rainbows along the way.

Forever- it’s all about perspective!

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.

Schoolbooks

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.

positive attitude

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.

let go of the toxic

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.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

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.

Persistence Dog

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.

GiGi and Pop
GiGi and Pop

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

Forever.  It’s all about perspective.

character

My Young Teacher

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.

God's got this

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.

rare mom and meg

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

hope its in our genes

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.

Restoring some of my faith…

I am of great religious faith, but of really little faith lately in government and politics.  Corruption abounds.  Decisions befuddle me.

myriad 4

I watched with great interest this week as the Supreme Court heard the case of Myriad Genetics, looking to obtain a patent on the BRCA1 and BRCA2 genes because their work was largely responsible for encoding these genes that drastically increase a woman’s risk of breast and ovarian cancer.  BRCA has been in the news alot lately because of Angelina Jolie, and I hope her ordeal has served to increase awareness of genetic diseases and their potential consequences.

myriad 1

BRCA is not the gene affected in my family.  In our house its PTEN, another gene that when mutated greatly increases the risk of breast, thyroid, uterine, kidney, skin, and other cancers.

That however, is not the point.  So many people missed that this case was even in the Supreme Court, and maybe I would have too – before PTEN entered our lives.  But, genetic mutation or not  – the implication that a company could PATENT a human gene, and by doing so essentially block out research from any other company or individual is downright frightening to me.

My body, my genes, my cells, or anything else a part of me do not belong to any company.  My body is a gift to me from my Creator – plain and simple.  I care for it the best way I know how.  I seek out natural and medical cures where each is appropriate.  Between my daughter and I we see about 15 doctors regularly.  We weigh out their opinions, and we make our decisions.  We replace them if they don’t meet our needs.  This is a freedom that is inherent in this country.

http://www.nytimes.com/roomfordebate/2013/06/06/can-the-human-blueprint-have-owners/permitting-ownership-of-genes-stops-research  ( An interesting “before” article)

The thought that a company could patent the PTEN gene, and by doing so, essentially own the rights to a part of my body – AND , even worse restrict the already under-served research for this rare disease had me flat out outraged.  I have already had breast cancer.  I have already had a double mastectomy.  I have already had a hysterectomy.  I will be 40 in November.

myriad 3

My daughter will be 10 in August and potential thyroid cancer looms large in front of our faces.  She will one day have to face her own breast and uterine cancer risks.  I can only pray that there will be some groundbreaking research before its her time.

Thankfully – earlier this week I received an Email from my older sister moments after the Supreme Court handed down their UNANIMOUS decision, an excerpt of which is below.

Respondent Myriad Genetics, Inc. (Myriad), obtained several patents after discovering the precise location and sequence of the
BRCA1 and BRCA2 genes, mutations of which can dramatically increase the risk of breast and ovarian cancer. This knowledge allowed
Myriad to determine the genes’ typical nucleotide sequence, which, in
turn, enabled it to develop medical tests useful for detecting mutations in these genes in a particular patient to assess the patient’s
cancer risk. If valid, Myriad’s patents would give it the exclusive
right to isolate an individual’s BRCA1 and BRCA2 genes, and would
give Myriad the exclusive right to synthetically create BRCA cDNA.
Petitioners filed suit, seeking a declaration that Myriad’s patents are
invalid under 35 U. S. C. §101. As relevant here, the District Court
granted summary judgment to petitioners, concluding that Myriad’s
claims were invalid because they covered products of nature. The
Federal Circuit initially reversed, but on remand in light of Mayo
Collaborative Services v. Prometheus Laboratories, Inc., 566 U. S. ___,
the Circuit found both isolated DNA and cDNA patent eligible.

Held: A naturally occurring DNA segment is a product of nature and
not patent eligible merely because it has been isolated, but cDNA is
patent eligible because it is not naturally occurring. Pp. 10–18.

 

I follow a group on Facebook for Young “Previvors,”  a term used to indicate women dealing with genetic diagnosis that will greatly increase their risk of cancer.  They  give me hope with their strength, that one day when my own young “previvor” faces inevitable tough decisions, there will be young women around to support her.   This link was taken from their Facebook group.

http://www.washingtonpost.com/politics/supreme-court-rules-human-genes-may-not-be-patented/2013/06/13/9e5c55d2-d43d-11e2-a73e-826d299ff459_story.html?hpid=z1

myriad 2

I can sleep a little easier today, even as Paul Offit continues to swear that ALL vaccines are safe and effective, and we should NOT take our vitamins.

http://philadelphia.cbslocal.com/2013/06/15/philadelphia-physician-dont-take-your-vitamins/

And even as I get a little queasy about the protections issued to Monsanto and their genetically modified foods, I have to feel a little better.  This week – the Supreme Court got it right.

 

JUNE!

It’s June.  It doesn’t feel like it.  At least the weather doesn’t.  It’s cool and rainy.  I guess that’s OK for now – while we are still wrapping up school.

It has been a long week.

I don’t usually leave my blog unattended for so long.  I am behind at writing.  I am behind even further at my reading.  It seems the days just blend together lately.

It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall.  There isn’t much time to be still.

schools out

Well – in another 2 weeks it is!

It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever.  You are grateful for the citizens, and politicians alike that fought relentlessly.  You are thrilled by speed bumps, but you still want that stop sign.  You celebrate with a glass of wine – or two.

crash

It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen.   You are the mother.  You will get by.

It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable.  Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90.  You balance those PT appointments with swimming lessons, all in preparation for the team she will join.  The team she is desperate to swim on successfully, and God willing – pain free.

competition_pools

It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician.  It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face.  And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine.  So, you take a chance and toss the Celebrex to the side.  Hoping maybe, just maybe she can get by without it.

celebrex100mg

It’s June and its raining.  You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain.  Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it.   Celebrex it is.

The war rages – all the months.  The battles are won and lost on a regular basis – but the war looms large.  I don my armor – a large binder of medical facts, bloodwork, and reports.  I gather my inner strength.

It’s June.  Summer vacation is coming, but there will be no camp in our house.  It doesn’t fit in with the schedule.

calendar

Every six months.  Every doctor.  Forever.  Mine, and hers.  Different doctors.  Different times.  Different facilities.

I am getting better at the scheduling.  I have learned to bunch them together.  So, we go in February and again in July.

For Meghan it’s the thyroid first.  That foreboding nemesis.  Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist.  That’s just the last week in June.

Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…

There will be 15 appointments before the 2nd week in July.  That’s if every one goes well.

This is how it has to be.  We have to work, she has school.  We can’t have the appointments all throughout the year, so we must endure them all at once.

It’s June.  I am already tired.  Wrapping up one full time job to focus on another. I feel my anxiety rising.

Getting all my rest.  Gathering my inner strength.  Armed and ready.  Kicking Cowden’s to the curb…

We can… WE WILL!

keep swimming

Howard works to put a stop sign in a deadly Staten Island intersection

Activism… Hopefully to save some lives!

WPIX 11 New York

The intersection of Waters and Clinton B. Fiske Avenues in Staten Island is becoming one of the more dangerous places in the city.  Just ask Ken Bach, who lives there.

“We’ve had six people injured in the last six months,” he told me.  That’s six people in three separate accidents.  And each time, at least one of the vehicles wound up in Bach’s yard or on his property.

Lori Ortega, a teacher at nearby PS thirty, described what happened to her last November.

“On November 26th of last year I was coming after school down Waters Avenue; and had stopped at the stop sign and was clear to go. I was about three fourths of the way through the intersection when I was t-boned by a truck coming at a fairly high rate of speed. My car spun two or three times and I ended up on Bach’s front lawn.”

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