Lessons Learned in 2012

What a year!  Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect.  As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital.  Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be.  The more things change…

In 2012…

I lost the ability to say, “I can’t.”  Instead I gained “Nerves of Steel” attacking this syndrome head on.

I lost my self pity and gained determination watching my daughter start her own awareness campaigns.

I lost my fear of driving on highways and in big cities.  Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.

I lost my fear of ridiculously large medical bills.   Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.

I lost about 3 more sizes, and have finally settled into clothes that fit.

I lost my muscle tone, as wild days kept exercising at bay.

I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.

I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…

I lost my fear of breast cancer and those ridiculous breast MRIs!

I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.

I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.

I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.

I lost my uterus, and my ovaries, but I was done with them anyway,  and I gained permanent birth control and instant hot flashes!

I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.

I lost my old cell phone, and finally traded it in for a “smart” phone.

I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.

I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”

I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.

I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall.  I always loved them with all my heart, but I will remember how lucky I am each and every day.

Family shot in front of the New Year's Eve Ball.
Family shot in front of the New Year’s Eve Ball.

In 2012 I gained tools I will use every day as I move forward.

I gained…

Determination – that we will beat this!

Focus- on what matters most.

Perspective- that everyone suffers.

Forgiveness- because negativity hurts me more than them.

Gratitude- for the kindness of family, friends, and strangers.

Compassion- as I watched my little girl continuously open her heart to others.

2012 had plenty of hard times, but like my car, it was far from a “total loss.”

Here’s to the lessons to be learned in 2013.

Wishing you all health and happiness!

pic collage

The Changing of the Calendar

Every year, this same week, I sit down with my calendar, and one for the following year.  I carefully transfer all the important dates I need to remember.  I write the birthdays, anniversaries, and other important “days to remember.”  There is probably some much more high tech efficient way to do this on my iPhone, but this is a job I am not looking to simplify, or give up.  I enjoy the time spent reflecting on the year that passed, and wondering what the next year will bring.


calendar

During the course of the year, around all the birthday and  anniversary reminders, the basic events of life fill in the blanks.  I can look back on some weeks, and months – where there doesn’t seem to be an empty box, and wonder how we got through.   There are the basics, PT, swimming, dance class, music class.  There are some parties, and celebrations.   Around them are peppered annual exams, like the cardiologist and the eye doctor.  There are some “sick” visits with the  pediatrician in there too.

Celabration Cake.2 003

But last year was a “special” year.  Between us there were three surgeries.  Tonight as I reviewed the calendar I saw a higher than normal number of pre and post op visits.  I saw consultation appointments with surgeons, and each month seemed to remind me of a surgery that was, well life changing in its own way.  There were certainly a lot of firsts in 2012.

surgeon5bl8

And, sadly there were some lasts too.  I couldn’t bring myself not to write GGPa’s birthday on the calendar.  It would have been in just a few weeks.  Instead I wrote it with a heart around it.  This year he will have his cake among the angels.  Nor could I stop myself from remembering his and GGMa’s anniversary the same way.  It didn’t feel right to leave it off.  I am sure she will appreciate a call or an Email anyway.

GGPa, GGMa, Grandma, and Pop (left to right)
GGPa, GGMa, Grandma, and Pop (left to right)

I remember lots of birthdays on my calendar.  Some for the very young, and others for those quite senior folks I love so much.  But, even as I ink those special days into 2013, I know there are no guarantees.  I know that my writing their special date doesn’t ensure that we will all celebrate together.  It is reality.  It is sometimes tough to swallow, but we are not in control.

In Newton Connecticut many young lives were tragically altered.  “Calendars” forever changed.  No rhyme or reason.  No notice.  Gone way too soon.

I attended the wake of a colleague tonight.  A 45 year old, happily married father of three.  He died suddenly Christmas Day.  I can not say we were “friends” outside of work, but I can tell you not a person that met this man easily forgot him.  His every breath was consumed wither with song, or words of his love for his family.  And tonight as I paid my respects I carried a heavy heart, and the reality again, that there are no guarantees.

Meghan was sick this morning.  Sicker than I have seen her in quite some time.  I was home alone, as Felix works this whole week before New Year‘s.  As she lay screaming on the bathroom floor, begging me to make the pain stop, I was terrified.  I called my sister to bring me Pedialyte and some essentials.  We lay there for quite a long time, at points her eyes were rolling – reacting to the pain in her stomach.  I held her as best I could and I prayed, hard.  I needed guidance.  I needed answers, and I needed that pain to be relieved.  He heard me, as He always does.  She vomited several times over the next hour or so, eventually ridding herself of whatever she had eaten that was bothering her.  I hadn’t seen that agony since the days of the gall bladder attacks when she was three.

We had had plans today, to celebrate my grandparents 67th wedding anniversary with them.  Even as the color came back into her cheeks, and the spring back into her step. we stayed home.  The lunch date that was on the calendar – unattended.  Our warm wishes sent with a phone call instead.

Grandma and Pop in December 1945
Grandma and Pop in December 1945

The calendar is a nice guide.  A road map of sorts.  It tells us where we hope to head.  But, as every day reassures me – it, like life, offers no guarantees.

This week the phone will ring.  Appointments will be set.  A thyroid biopsy will be scheduled.  A surgeon for my spleen may even get written in to the calendar as “consultation.”  2012 for us will end as it began.

Although as I tossed the calendar into the trash tonight, I couldn’t help but feel… somehow older, wiser, and even more appreciative of those who somehow come across my calendar each year.

55-one_year_larter

 

Two of a Kind

The upside of waiting I guess, is that it gives me a bit of time.  Since I can’t concentrate, I multitask.  Simultaneously taking down the Christmas decorations, while doing laundry and eating chocolate chip cookies with white wine.  Seems like a perfect time to stop and blog.

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A few months back I posted about Meghan‘s necklace.  The one that we had had created, just for her, inspired by the Global Genes Project logo of the denim jeans.  She received it in August and was so thrilled.  She wears it proudly and looks at it as a platform to explain to people what it stands for.

Meg necklace

Her goal in having it created was to ultimately have the Global Genes Project sell them as a fund raiser.  She has this hope that her idea will ultimately raise money for rare and genetic disorders.  I think she is right, and eventually they will get to selling it.  Although the holidays are a crazy time and a lot of major things have been going on at the Global Genes Project.  They are a super organization.  Working to the benefit of all of us who are affected by rare genetic disorders – in our case, Cowden’s Syndrome.

This fall she had my friend’s husband – who created the piece, engrave hers.  It says “August 2012 – First of its kind.”  How appropriate.  I am quite sure my girl is the “first of her kind” as well.

Because, she decided she wanted me to have one too.  A necklace like hers.

necklace 1

“After all Mom, you didn’t just have breast cancer.  Cowden’s Syndrome is what we will both have – forever.”

She’s right.  As I gulp the last of my wine.  We are at this forever.  Together.  And as much as it flat out stinks, I wouldn’t want to share forever with anyone else.  She is one awesome little girl.  Each of us 1 in 200,000.  Lucky enough to have each other.

Two of a kind
Two of a kind

 

 

 

 

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…

What a Day!

I am getting a bit fatigued by all the positive stories I tell myself.  All the ones where everything works out just fine, and we get a bit of a break from doctors and surgery and chaos and worry.

I think I am getting tired of them, because I am starting to doubt if they are true.

The waiting room in the pediatrics department.
The waiting room in the pediatrics department.

We began the day at radiology at MSKCC in NYC.  The thyroid sonogram took longer than it should have.  I knew that.  I also knew when the doctor of radiology asked to speak to me alone that the news wasn’t great.

The nodule they were concerned about in June still has them worried.  Despite there being MANY other thyroid nodules, this is the one that is of concern.  I have every reason to believe it is the same nodule that caused concern when we had the horrendous biopsy at the other hospital a year ago.  The doctor told me right there it had to be biopsied.  She didn’t even wait for us to see Dr. S.  (See the appointments are set up so you go to radiology an hour and a half before you go to the doctor.  Then the doctor usually reports on the findings.)  I knew this was out of order, and it spoke to the seriousness of it all.

I explained that Meghan‘s biopsy last November was the most traumatizing experience of our medical lives together.  We have been through a lot, but watching that radiologist YELL at her to be quiet, and then BURN her neck with the numbing spray… well it was too much for any of us.  She will need to be sedated I said.

We went upstairs for our appointment with Dr. S.  Before that Meghan met with one of the Child Life Specialists, and gave over 2 shopping bags full of toys.  The woman was in awe, and I was just so proud.

We checked in for our visit with Dr. S. and we waited.  While we waited I spoke.  Candidly.  I had to be the one to tell her they were looking for cancer.  I had to tell her they were going to biopsy again.  I had to tell her I was TRYING to get her sedation, but I couldn’t promise.  She swallowed.  She stared at me.  She took it all in.  Then she reminded me I should try REALLY hard for sedation with the biopsy.

We saw Dr. S.  No new information, except that she grew a few inches and lost a few pounds since June.  HE said she is OK right now, but he doesn’t want to see her lose any more.  I chuckled at the school notices I always get home calling her obese.  Dr. S.  reexplained what I had heard in radiology.  He reassured us that  even if the nodule is malignant it is small, and not likely to need more than a thyroid removal.  Some comfort… but not a ton, for my girl still growing.  We were advised to take the first available biopsy appointment.  And we will.  I should know in a day or so when that will be.

american girl

Once we checked out it was on to the American Girl Store.  WHAT A CROWD!  Not being crowd people, either of us, we navigated the store and Meghan picked up some essentials – like a backpack and an allergy safe lunch for her new doll.  The doll got her ears pierced, and we were out the door.

Daddy at work.
Daddy at work.

We headed up to see Daddy at work.  We got a close look at the New Year’s Eve ball, and the view never gets old, no matter how many times we see it.  Meghan LOVES seeing Daddy at work!

Family shot in front of the New Year's Eve Ball.
Family shot in front of the New Year’s Eve Ball.

45 minuted to get the car out of a midtown lot.  We arrived home to 2 dogs that just weren’t able to wait until we got home.  Upstairs floor cleaned.  Two glasses of wine gone.  Some type of leftovers for dinner.  And tomorrow we get to wait by the phone again.

Good thing we are always ready for a fight!
Good thing we are always ready for a fight!

Maybe in January the Ortegas should resolve to lose a thyroid and a spleen?  One each?  Really???

Tonight Cowden’s Syndrome, I will thank you for my gray hair, loss of appetite and generalized anxiety.  Cut us a break… please?

Nerves of Steel

I mean no disrespect to the “Man of Steel,” but I think parents of kids with chronic illnesses have it more difficult.

Man-Of-Steel-man-of-steel-32092248-1024-768

We need “Nerves of Steel.”

NervesOfSteel_DOS_title

I am trying to settle in to bed.  Tomorrow bright and early we head out for the thyroid sonogram and appointment.  My stomach is twisted in a million directions.

At this point I should be calmer.  I should relax, and have faith – as I am sure that everything will somehow be alright.  Yet, still, it is so hard to keep your mind from wandering.

chronic illness

I will take it all, every illness, every horrible twist and turn that this wretched Cowden’s Syndrome will toss at me.  Just PLEASE… leave my kid out of it.

Today we stayed home.  The three of us, (and Allie and Lucky) as a family.  We did some work, and we rested.  We also did a little bit of shopping.

My girl had only three things on her list for Santa.  She asked for an American Girl Doll, a dog ring, and money to buy toys for the children in the hospital.  Santa left her $100.  Today she carefully selected some toys, “a kid stuck in a hospital might appreciate.”  And she would know.  She has spent her share of time stuck in a hospital.

These are the toys she picked out for the kids in the hospital.
These are the toys she picked out for the kids in the hospital.

Such a great kid.  I am just so proud of her compassion.  We are blessed.  Please, dear God… hold us close tomorrow.

My three girls... resting together.
My three girls… resting together.

 

Perspective… with a touch of fatigue and frustration

I have said so many times, and through the last year especially, that it’s all about perspective.  That is how I get by, and that is how I teach my daughter.  The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know.  We aren’t them.  So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

perspective einstien

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective.  Sometimes it’s just hard.  Sometimes its hard to get up and get going, and press on.  Sometimes its hard to deal with the punches life keeps throwing.  Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety.  Sometimes that’s just how it is.

justkeepswimming

So, I remain torn.  Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey?  That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance.  I duck phone calls and messages.  Not because I don’t want people.  It’s actually quite the opposite.  Its because I fear people will tire of hearing the same old thing.  And, really, no one knows what to say.  So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

several days at once

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches  I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one.  The week of “Sandy” her eye doctor appointment was cancelled.  Haven’t rescheduled that one either.  Tonight she lays in bed resting her fatigued hypermobile joints.  I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look.  It took phone call after phone call, but finally they were received by the endocrinologist/oncologist.  Just in time for a holiday break.  We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign.  We were called in for a meeting with the doctor a few days after New Years.  The news was better than we had expected.  “Precancerous cells.”  Come back in 6 months.  And so we did.  The scan in June got us the same – return in six months.  On December 27th we will head back to see if those cells are still “precancerous.”   I am fairly sure I am the only one who remembers the timing of last year’s anxiety.  That is why I find this year’s timing ironic as well.

thyroid biopsy

So, the car is totaled and gone a few weeks now.  The back is improving – often, but not always.  The sonogram revealed disconcerting growth with the spleen hamartomas.  I trudged through another MRI.  I was told to call a surgeon.  They requested the CD from the local sonogram.  I sent it Fed Ex.   It arrived last Thursday..  I called Thursday last week to confirm its arrival.  Then I called Tuesday to find out what was the progress.  I was told the oncologist and the surgeon had to view it then talk.  I think I annoyed the receptionist when I asked if it would be after Christmas.  She said no.  It would be sooner.  So, I have carried my phone like a schoolgirl with a crush.  Nope.  Tomorrow is Friday.  I can almost wager they are away, or on vacation.  I just want to know if I am planning for surgery on my spleen.  That’s all.  Am I planning for surgery?  I can wait on the specifics.

tired-of-waiting

But,maybe I can’t wait that long.  I guess that all depends on Meghan’s thyroid.  If that stays in, then I can pull this off.  One more surgery – no big deal.  But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here.  I know how God feels about that.  Just some guidance… maybe?

I-plan-God-laughs

I was back at the hospital that did my hysterectomy tonight for my six month follow-up.  Everything looks good.  Apparently the hot flashes are  right on schedule, and hormonal migranes get me a script for medication.  I will see them  again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff.   It’s all good.  I got this.

you-got-this

I think.

Yesterday was “cause day” at our school.  I wore Meghan’s necklace and her shirt.  I was able to raise a bit of awareness.  We have 300 yards of denim ribbon.  We are going to do something special for rare disease day in February.

rare disease day

We are special.  We are 1 in 200.000.  There are 2 of us.  And I am tired.

But, I haven’t lost my perspective.  We are so blessed.