Happy 2nd “Boob Day!”

My math mind is full of numbers.  It is full of lots of things actually, and sometimes I wish I could get a few of them out… quite a few.

I am pretty good – although not perfect- with dates.

Today marks three months since my father died.  Flying free with the angels I am sure, yet I miss him.  A lot.  A blink of an eye, and an eternity.

Tomorrow is my nephew’s birthday.  He will be 6.

I remember his 4th birthday quite clearly, although I didn’t see him that day either.

On March 5th in 2012 I had the “prophylactic” bilateral mastectomy.  The one that ended up being stage 1 DCIS.  Quite the surprise party.

Happy Boob Day

And while I don’t even miss my old boobs, the new ones get scrutinized a lot more than the old ones.  Well meaning surgeons, they say things like “that kind of volume falling away is normal,”  or “we can even that out whenever you want.”  The thought of someone coming near me again with a scalpel right now makes me ill.  They will have their chance – years from now when these girls have to be replaced.  Maybe then I will have time to care more.

The last 2 years have been a whirlwind.  Well…maybe even before that.  The scope of the changes in our lives in recent years require more than I can muster in a 10 PM post.  But, being a numbers person…

2nd-birthday

Between Meghan and I we have had 5 surgeries in the last 2 years.  She has me beat 3 to 2.  But, I have lost more body parts.  I am down 2 breasts, a uterus and 2 ovaries.  She lost her thyroid, and a vascular cyst in her hand.

I am still crossing my fingers about my spleen.  That one’s up for MRI in April.  Hoping the 4 tumors there are behaving.

spleen

There comes a point where you have to laugh I guess.  People think “Oh no! A mastectomy!!”

I think – “Whatever it takes…”  But then again I had a pretty good teacher. (XO MOM)

I guess it’s all about perspective.

Meghan is really into identity, and figuring out where she belongs.  This week I bought her a “Previvor” T shirt.  She was thrilled to wear it to school today.  She takes the opportunity to explain genetic cancer risks whenever she can.  While I am happy she is confident I shudder at reality.

This is only stage 1 in her life as a previvor, staying one step ahead of genetic cancer risks looming large.  This is only the beginning.

We run from doctor to doctor.  We alternate surgeries.  We try to laugh in between as we deal with the rest of life.  Time is very difficult to balance.  The constant running to doctors and the anxiety of waiting for them to find “something” can literally make you insane.

time struggle

If you let them.

And I think that’s probably the key.  And the message.

I am overwhelmed this week.  Really fried.  Having a tough time keeping it all together.

Then I think…

I was ahead of thyroid cancer 20 years ago before I knew the depth of the risk.

I am 2 years beyond the threat of breast cancer.

My girl is weeks past the looming thyroid cancer that threatened her.

Two years.  New boobs.  No sagging on this 40 something gal.

Plus I am a HELL of a lot better off than I was two years ago at this time!

Ash Wednesday.  Never raised to “give up” for Lent.  Rather to use it as a time for focus.

Time to get out of this funk.  Forget November.  Time to be thankful is right now.

And today I am thankful for this little girl whose diagnosis saved my life.

My body may be 40, but my boobs are only 2!

Thankful to God and this little chick!

This kid is clearly a "FORCE" to be reckoned with!
This kid is clearly a “FORCE” to be reckoned with!

FORCE

Hurry up… and WAIT!

Hurry up – and wait.  And wait.  And wait.

I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work.  We race to take our children to the many places they need to be.  We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.

rat-rce

In our house we race.  Gratefully, we have added something fun in the form of Swim Team this year.  There are many weeks there is even time for two practices.  So she won’t be an Olympian.  But some fun is an improvement.

Because without that Swim Team – it was all medical – all the time.

i-love-swim-

Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York.  And they all require regular check ups…

top doctors nyc 2013

“Skip it…” whispers the voice inside your head.  “I don’t have time…” “We won’t make practice…”

But “skipping it” is not a luxury we can afford.  Cowden’s Syndrome has robbed us of the luxury of putting it off.  It is the clock that is always running.  It is the reality of my breast cancer – beaten.  It is the “reminder” in my iphone.  It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.

And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks.  Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.

There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few.  Some are once a year.  Most are twice.  And that’s all well and good if everything checks out fine.  However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….

Last year I tried to get them all done in July.  That was pure indescribable hell and it swallowed our whole summer.  Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.

And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.

So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in.  We often find ourselves racing into an appointment after a long day – only to find ourselves waiting  to be seen.

wait card 1

“Hurry up – and wait.”

Meghan is an outstanding “wait-er.”  Partially because she’s used to it, and partially because she knows it’s necessary.  We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied.  But she would rather be playing.  Or swimming.  Or resting.  Or crafting.  Or just being a kid.

We find ourselves facing the same problems many other families face – laboring to fit in time for fun.  But it is further complicated by fatigue and a lack of stamina.  She can not walk more that about 3/4 mile without wiping out.  She will, when time allows, sleep 13-14 hours a night.  So we have to always be careful not to push too hard, because the repercussions can be serious.  Sometimes I imagine friends think we make it up.

“Hurry up – and wait.”

And we raced into Sloan Kettering Cancer Center on December 19th after school.  I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.

But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck.  The one she feels every time she goes to put her necklace on.  The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.

So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned.  He asked for a tape measure.  His eyes were serious.  He spoke of significant growth.  He said we needed a biopsy.

“So let’s do it.  I am off for 10 days.”

“Well, you know, with the holidays…”

“Let’s hurry up and get it done.  I will take whatever you have.”

And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof.  The doctor explained that the radiologist doing the FNA needed a recent ultrasound.  (You mean like the one I had asked for with the December appointment all along?)  I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute.  So we did.  Ultrasound December 23rd.  FNA under general anesthesia on December 31st.

“Hurry up – and wait.”

Apparently no one got the memo things have been a bit stressful around here this month.

So we did the ultrasound on the 23rd.  30 minutes with the tech.  Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan.  Nothing going on on the 23rd of December.  No worries.

“Hey, that’s a lot of nodules on a young lady…”  says the doctor.  ARGH!

So when do we squeeze in something fun?  Something she can say she DID on the vacation?

We made it up to see the New Year’s Eve Ball very early on that Saturday morning.   Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month.  Trying to find the time to view her world through a camera lens.  We spent about an hour.  Then we went home.

Photo credit -Meghan 12/28/13
Grandpa Tom’s “smile”

NYE ball familyNYE ball 2013b

There were 2 play dates.  Lovely girls.  So I guess there was success.

And then today.

Arrive at 6:30 I was told.  So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.

“Hurry up – and wait.”

please wait

We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor.  The procedure was at 8:15 and lasted double the time it should have.

We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.

I may have a few cocktails myself as midnight approaches.  If I stay awake that long.  After all its been a long day, week….

And we know Daddy’s got the New Year’s Eve Ball well taken care of.

 

 

Disconnected

Mother Teresa trust

Breathe in… Breathe out… Breathe in…

I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down.  Now.

I know that’s wrong for any number of reasons, but I have always been candid here.

In the 10 days since we have buried my father there has been a whirlwind of papers and errands.  There have been things to organize and sort.  There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.

And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.

This year the reasons are kind of obvious.   I am starting to think its likely to get worse before it gets anywhere close to better.

Then my husband reminded me about last year.  He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU.  He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.

It was right after Christmas last year that we had the “Santa” talk with my girl.  My one and only.

So, I guess I knew all along this would be a year I had to look a bit harder for the magic.  We looked hard in Disney in August.  And we found it.

But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live.  That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma.  I heard the Christmas tunes.  I helped with the ornaments.  And I felt like I was in a bad movie.

Meghan had suffered with migraine headaches most of October and November as my father was sick.  An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.

one day at a time

I couldn’t get the cards together this year.  I just couldn’t do it.  Maybe some time around Valentine’s Day I will feel up to a greeting.  I ordered the food for Christmas dinner  too.  Yep, its better for everyone anyway, as I am a rotten cook.  And the family is bringing dessert.  I bought gifts for the children.  Although even those were mostly purchased online.  And so many of the adults are getting gift cards to their favorite stores.

Last weekend Dad’s mom was in the hospital.  Today she is back at her home, but she is worn out.

And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger.  Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus,  it will all be ok.  Somehow.

So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control.  After the doctor examined her, and her neck, he asked for a tape measure.  He measured “significant” growth since June in one of the right side nodules.  “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”

My heart skipped a beat.

“Where did you get that necklace Meghan?” asked the nurse.

“My Grandpa Tom gave it to me.  He died this month from pancreatic cancer.”

Sometimes silence really is deafening.

“It may take a few days to get it scheduled Mrs. Ortega.  You know, with the holidays…”

Yep.  I know.

wind

STUPID CANCER show!

I am absolutely high on adrenaline right now…

In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.”

https://www.facebook.com/stupidcancer

stupidcancershow

I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.

Tonight was the night.

What an amazing show.  I am so glad to be familiar with it now, and you should check it out!

Somehow the words came pouring out.  It’s amazing what speaking from the heart can do.  I can only hope that someone tonight knows what they didn’t know before.

I find there to be no coincidences in life.

After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer.  Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.

http://www.blogtalkradio.com/stupidcancershow/2013/10/22/stupid-environment

(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much!  But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)

Near as I can figure these days, breathing increases your cancer risk.  But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.

There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us.  But we can do what we can to help.

There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.

People ask why we devote so much of our time, energy and budget into healthy food.

Genetics are not on our side.  But we can fill our bodies with healthy, pure, organic superfood.

These days the core of the nutrition in our home comes from Isagenix.  It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.

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

This company provides quality food, and they make it possible for you to afford it, because you can eat your Isagenix for free.

“You plus two, them plus two.”

you plus two

Well worth my initial investment.  Quality nutrition for my entire family.

We are certainly going to do the best we can at all times.

Our health, no guarantee.  But we are going to do the best we can to keep that “STUPID CANCER” away.

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

Cowden’s Syndrome – You’re NOT the boss of US!

“You’re not the boss of me!”

youre-not-the-boss-of-me-t-shirt-400x330

Sometimes little kids can be misguided. Sometimes, Mom, Dad, or teacher is in fact the BOSS of them. But that statement from the mouth of a child is the beginning of their move towards independent thought. And, if nurtured properly can lead to a productive, independent, determined adult.

That’s what we are getting at here.

You see I spend enough time around children, that their words and phrases sometimes stick with me. And this one is stuck with me this weekend. So I reflect how it applies to my 9 and a half year old daughter and my 39 and a half year old self.

you're not the boss of me mommy is

See, even though Meghan is very good at realizing I am often the BOSS of her, she will not be easily ruled. And while I love her independence, I love more the fact that she remains respectful towards her father and I – and dare I say, all the adults she deals with. She, as an only child has lots of bosses, but I encourage her to rise up against the tyrant that is Cowden’s Syndrome – and she does.

If Cowden’s Syndrome were her boss, she would sit idly by while the pain persisted; in the knees, the ankle, the shoulder, the wrist or whatever joint it currently is attempting a choke hold on.

hide in corner

But, since its not – she goes to dance class on Monday, Swim practice on Tuesday, Music and Movement on Thursday, and Swim Meets on the weekend. She often cries in pain in the hours following these events. But never once does she talk of stopping.

competition_pools

You see, Cowden’s Syndrome is not the boss of her.

Cowden’s Syndrome would have her hide in a corner, ashamed of an “orphan” disease that no one can really understand. But hiding is not for my girl. Instead she asks for a denim ribbon necklace. She learns about the Global Genes Project, she understands “Rare Disease Day,” and she actively participates in the “Wear that you Care” campaign. She makes thousands of denim ribbons, and informational fliers. She gives 2 speeches at her school. She even wrote a book about it. HA! Don’t tell her no one really knows about Cowden’s Syndrome – because she will take it as a challenge, and fix it.

Article main2

denim ribbons

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

https://www.facebook.com/photo.php?v=10200149863021946 (To see Meghan’s speech)

Cowden’s Syndrome – with its biopsies and cancer risks would like to leave us terrified. Instead, we are empowered. Meghan got the anesthesia she needed and deserved, to have her last thyroid biopsy with dignity. The terror is gone. We will have anesthesia next time too. And, if the cancer hits – we are ready. We are empowered.

thyroid cancer awareness

Cowden’s Syndrome – You’re NOT the boss of us.

You certainly don’t rule me. 85% risk of breast cancer – yeah, so? Endometrial cancer? Nope – don’t need that either. Thyroid cancer – half gone already, and checked every 6 months. Melanoma – nope. And annual skin exams just to be sure. Colonoscopy – did that. Clean enough to wait until 2015. My spleen – well. That’s still in limbo. But you know what? Whatever. I have stared down worse.

Just came back from my girl’s first swim meet. Time to relish in the satisfaction that something normal happened here today. We will handle the pain, with the smile of knowing – she’s pretty fast.

basemenr closet

I know you’re staying Cowden’s Syndrome. I know we can’t ever get rid of you. But, seriously. Unpack in the basement closet and stay away from us.

Cowden’s Syndrome – You’re NOT the boss of US!

broken pieces into masterpieces

Waiting…

Proverbs 3:5-6
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight

 

footprints-in-the-sand

As my husband and I lay last night trying to fall asleep.  We lamented over the fact that we are waiting.  Waiting for a call for a biopsy time for Meghan.  Waiting for a final decision on my spleen – still.  Waiting… for all sorts of other less significant things.

The waiting is one of the worst parts of Cowden’s Syndrome.  It is a blessing to have the warning to seek early detection, but the 6 month cycles of scans and tests, coupled with the waiting for results…. sometimes it’s just torture.

Meghan is nervous.  Not about the threat of thyroid cancer.  Bright as she is I doubt she grasps the full reality of that.  She is waiting and worried about the biopsy.  She already struggled to sleep last night.

As we spoke my husband said something that struck me.  He said, “I am a little tired of being carried.  I am glad God is there, but I want to walk a little too.”  It only took me a moment to know he was referring to his favorite poem – the one we used as one of the readings in our wedding.

I guess we are waiting, for our feet to spend some time on the sand, knowing we are being held up – and incredibly grateful for the support…