Triage- A Way of Life

Triage.  The word hangs with me like the memories of countless Emergency Room visits.

Triage. Take care of the most serious first.

It’s the reason we might wait hours for stitches, and barely a moment for a trauma.

I get it.  It makes sense in the ER.  It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.

The thing is, you typically don’t stay in those places FOREVER.

Places we equate with triage are not places of comfort.  And that’s where this life with Cowden’s Syndrome can get tricky.

You see, lately I can’t shake the feeling that life is triage.  24/7/365 damage assessment, and handling the most critical first.  Vigilant.  Hyper-vigilant.  ALL.  THE.  TIME.

When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care.  And then there are the times that you go for those monitoring appointments and they require their own follow-up.  This condition can easily morph into a beast that can swallow you whole.

And we’re at it times 2.

What I refuse to allow this syndrome to do is take away any more from my daughter’s life  than it has.  To the best of our ability, she will do “teenage” things, and she will do things she enjoys.

But, lately that has become quite the juggling act.

I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology.  I am monitored annually by gyn oncology, and oncology.  This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy.  I am monitored every 5 years for colonoscopy.  I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney.  This may not seem all that impressive, but those are just the appointments if everything goes well.  That’s not additional scanning, blood work and biopsies.  None of them are close to home either.

Not to mention, I am still searching for a local primary care doctor.  In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing.  I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her.  I just completed vascular surgery, with its pre and post op appointments and recovery as well.

That’s just me.  Me, and my full-time job.  And, like every mother, my needs are not the most important.

My girl sees endocrinology twice a year.  She is still, 4 years post-op, trying to get thyroid function balanced.  She sees gastroenterology, and dermatology twice a year.  She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus.  She sees a chiropractor every 2-3 weeks for pain management.  Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans.  She sees orthopedics every 8 weeks.  They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder.  There have been a few MRIs of late.  She has seen physical therapy weekly since the fall, and is now working on twice a week.

She is tired.  Partially because of her schedule, and partially because of her sleep patterns.  Despite a regular bed time, she struggles to get quality sleep.  It is hard to turn her brain off, and for her to get rest.

She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma.  She is working through it – but, like everything else, it is a great deal of work.

She is awaiting word that her service dog is ready.  The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.

She is an honor student.  She is a swimmer – at least 5 days a week, for 12-15 hours a week.  She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week.  She enjoys a local church youth groups.

She has food allergies – restricted from dairy, gluten and soy.  And seasonal allergies to all things pollen.

None of this includes normal things.  Like dentist and orthodontist visits, or even haircuts.

It is easy to get isolated.

She has a strong sense of what is right and wrong, and can be rigid in her perceptions.  But, life has shown her things most adults, let alone people her age, have ever seen.   Just as that strong mindedness flusters me, I refuse to try to break it down.  It is that same will that has gotten us where we are.

And where we are, is in TRIAGE.

My iphone calendar is with me everywhere.  I prioritize swim and theater over doctors when I can.  Physical Therapy is a high on the list right now for pain management and strengthening.

Vocal lessons keep her going, as she can sing herself through a lot of stress.  Theater is just a fun group of children, and I am not willing to sacrifice that.

I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out.  We travel to most – NYC or LI.  Short on miles – but up to 2 hours each way – often.

We stack them when we can.  Two appointments are a bonus, three is a banner day.

And every year about this time I dream of a summer light on appointments.  I’ve yet to see it come true.  Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.

There is a blessing in knowing what we are fighting.  There is blessing in having a warning system in place.  But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.

Triage.

Triage means that right now the physical and emotional health of my teenager trumps all.

So she swims 5 days.  We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim.  We do voice, and theater on Saturday.

I make my appointments on weekends when my husband can drive.  I make my appointments a year out so I can stack three in one day in the summer and on February break.  I schedule our surgeries for February of Easter vacation when I can.

I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.

I research at night.  There is always a need to learn what most of our doctors do not know.

I write, when I can.  I love it and I miss it, but time just doesn’t seem to allow.

Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.

Dust builds in places I never used to allow it.

Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things.  I miss them.

Triage.

It starts early in the morning, waking up a teen who just hasn’t slept well.

It continues through the day – my job and her school.

After school is all about making it work.  Swim, PT, or whatever therapy the night brings.

There are often phone calls, requests for lab reports, or battles about IEP needs…  Emails go through the iphone.

Usually we are out of the house about 13 hours.

At night we pack everything so that we can be ready to begin again.

Triage.

Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life.  Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.

In order to make this happen, everything revolves around her schedule.  There are opinions about that in all directions.  There are people who would tell me I am creating an entitled, self-absorbed human.  I don’t pay them much mind, because they haven’t met her.

When I signed in to be a parent I knew I’d be all in.  I just never saw THIS coming.

Balance needs to always be in place, where the physical needs of either of us are never overlooked.  However, non-essential appointments CAN, and WILL be scheduled around our availability.  She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.

Triage is meant to be something you experience briefly in times of crisis.

The “fight or flight” response is not always supposed to be on.

But it is.

At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.

At this time, we may say no constantly, to the point where you stop inviting.  Trust me.  We’d rather go.  We actually enjoy your company.

At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.

We are constantly evaluating order of events, but TRIAGE is fluid by definition.  Unfortunately there are so many situations and scenarios, it is hard to see through them all.

Even at our toughest times.  Even at our most overwhelmed days.  We can look around and find our blessings.  They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.

We are aware of those suffering illnesses far beyond our grasp.  We are aware and we are grateful for the health we do have.

We are also tired.  And lonely.  And often overwhelmed.  We also know this is the way the plan must go for now.  And one day it may change.

Triage is fluid.

Life is fluid.

We all do the best we can with what we have where we are.

And we remain steadfast

#beatingcowdens.

 

 

Rare Disease Day 2018

I took today off from work.

Sadly, it was not to enjoy the almost 60 degree February day.

Today was doctor day.

And as I traveled  two hours for the 17 mile trip into Manhattan this morning, I had plenty of time to think about World Rare Disease Day, tomorrow, February 28th.

Rare Disease Day 2018 will pass for us unlike the last few.  In recent years my family, spearheaded by my daughter, has held a sizable fundraiser to draw attention to Rare Disease Day.  Our goal was always to raise awareness and funds to support research and treatment of our Rare Disease through the PTEN Hamartoma Tumor Syndrome Foundation.  My girl needed some time off to address some things on her mind and heart.  I gave her that time.  She is still working hard, but she has already expressed an interest to join me in planning an event in October of 2018.  Stay tuned.

While I was driving, I thought a lot about RARE.  It has so many connotations.

Sometimes I think of snowflakes, and rainbows, and unicorns.  I think of pleasant, beautiful things.  Some of the buildings on the skyline look rare.  Rare can be a thing, a sight, an action or even a feeling.

Rare is defined by Dictionary.com as:

adjectiverarer, rarest.

1. coming or occurring far apart in time; unusual; uncommon:

a rare disease; His visits are rare occasions.

2. thinly distributed over an area; few and widely separated:

Lighthouses are rare on that part of the coast.

3. having the component parts not closely compacted together; not dense:

rare gases; light-headed from the rare mountain air.

4. unusually great:

a rare display of courage.

5. unusually excellent; admirable; fine:

She showed rare tact in inviting them.
Rare can mean remarkable, wonderful and exciting.  It can mean fascinating, and intriguing.
But life with a Rare Disease reminds you often, that RARE can have many other connotations.
A quick look at thesaurus.com generated these synonyms to RARE:

Synonyms for rare

adj exceptional, infrequent

Quite a list, right?  And, if you really look with an honest eye, not all of them have super positive connotations.

Strange, uncommon, unthinkable, unusual, deficient, flimsy, tenuous, (and no this isn’t a typo, but I had to look it up) unwonted…

These are not the words you’d use to describe a beautiful natural event, and probably not the words you’d pick for a dear friend.

Yet, these words also mean RARE.

I set out today to get screened by 3 of my many specialists.  The cancer risks with a PTEN mutation are almost astronomical.  It becomes a game of “when” not “if” in so many cases, and the vigilance required to seek out the cancers so they are detected early can be overwhelming.  Lifetime risks for breast (approximately 85% as compared to 7%), thyroid approximately 30% to .9%), uterine (approximately 28% as compared to 1.7%), kidney(approximately 24% as compared to 0.8%) and melanoma (approximately 6% as compared to 1.1%) eclipse the general population.  (These numbers were midline from a graph in this link) www.myriadpro.com/services/clinical-summaries/gene-pdf.php?gene=pten&allele…

The risk of recurrence is also great, and that of developing a second, primary site cancer is also noteworthy.  So, having had a double mastectomy with a great prognosis, does not eliminate the need for biannual screening.  I love my breast surgeon.  She is one of the best.   She and I are both always pleased when she can tell me everything is good.

But, I held onto her a little longer today.  I told her I was in the market for an internist.  I need someone to play “case manager.”  I need someone to be my doctor.  She paused and furrowed her brow a bit.

That isn’t an easy request, she told me.  I said I just need someone willing to learn a little, and consider that I don’t fit in a “box.”  I need someone who will partner with me.  She told me she’d led me know if she thought of anyone.

I’m not hopeful.

I waited down the hall for the hematologist/oncologist.  When she was an hour late, I walked the half mile (in jeans and compression stockings from Wednesday’s surgery) BACK to the main hospital to see my endocrine surgeon.

She may be the weakest link in my chain right now.  She scanned the remains of my “lumpy, bumpy” half thyroid that the surgeon 25 years ago thought would be an asset to me.  She scanned a very slowly growing lymph node in the area that went from .6mm to .8mm.  She told me to get some blood drawn and that all looked good.  I showed her a recent chem panel. She pointedly ignored every out of range number, and zeroed in on the calcium level.  “Good.”  And she handed me back the papers.  Then she ordered a short-sighted list of thyroid labs that I would never tolerate for my daughter.  I was out of her hair in 15 minutes.

I walked back to the cancer center thinking “rare” thoughts.

I waited again for the oncologist, who was as always pleasant and happy.  She examined my spleen, and what she could feel of the 4 hamartomas that live there.  She felt nothing out of the ordinary, and ordered my abdominal sonogram.

I showed her the same chem panel I showed the endocrinologist.  She agreed the irregular labs should be repeated, but did not feel concerned.  I asked her about an internist.

She froze.  She suggested a new genetics person that had recently come to the hospital.  I may go for a consult.

But, and internist?  I asked again.

Hesitation.  Almost painful look.  She explained that the internists have to move fast.  They don’t really have time to get to know a new condition.  She couldn’t be sure if she new any that would care properly for me.  She basically gave me 4 names, but told me I was best left to do it myself.

Even though my rational mind understands it to a degree, I felt like I’d been punched in the gut.  I have homeowners insurance, auto insurance, and life insurance, just in case.  I have a 401K and am part of a pension system.  I do my best to prepare.  And I was basically told, by a major NYC hospital, that I stood little chance of finding an internist who would take the time to manage my case.

That scares me.  I do it.  I always do it, and I will continue to do it.  However, I am managing health care for myself and my teen.  And it’s not just routine stuff.  Cancer is looming, lurking, and mocking us.  All I want is someone to check behind, proofread per se, and make sure I am checking all the right boxes.  I want someone who will know that a test result in us may not mean what it does in someone else.  I want someone who looks me in the eye and knows I am a human who plans to live a long time even though her body doesn’t play by the rules.  I want a name to put on the line every time someone asks me for my “primary care” doctor, and I want that doctor to at least glance at every pertinent paper sent to them about my health.

I got my blood drawn at the hospital lab.

It’ll be in the online system long before anyone ever discusses it with me.   I’ll scan it, and hope that there are no alarm bells to be sounded this time.

RARE isn’t just snowflakes and unicorns.

RARE is that kid, who everyone looks past.  The one without the cool clothes, or the right hair.  RARE is the one who no one wants at their lunch table, and the one who is conveniently forgotten on fun excursions.  Because, what it RARE can’t do what everyone else can?  And anyway,  truth be told, RARE has cancelled one too many times.  RARE doesn’t really fit in anywhere.  RARE is brushed aside, in hopes they won’t bother anyone, or maybe they it go away.  People are afraid of RARE.  They perceive it as fragile, needing too much effort, or too hard to understand.  Sometimes people even envy RARE, without thinking through the late nights, the terror, the medical strategies, the constant advocacy.  RARE wants to fit in, but it never will.

RARE is too much new, and too scary for a doctor to own more than one piece.

We are scared of things we don’t understand.

Right now, RARE is a bit of a loner.

We are all RARE in some way.

But, RARE as a lifestyle is not an easy road.  And it is not a choice.

The choice comes in what we make of it.

Rare Disease Day 2018 will be a little different this year for us, a little more quiet.  But, I hope there is no doubt, that we will come back.

RARE does not give up.  Ever.

#beatingcowdens

You Might Have Cowden’s Syndrome if…

You might have Cowden’s Syndrome (or insert your chronic/rare illness here) if…

I spent some time alone last night.

That sounded a great deal nicer than it actually was.  There was no manicure, no spa, and not even any wine.

Last night, after working, taking my daughter to her orthopedist on Long Island, and sitting in traffic home, I finally had to address the feeling that something large was sitting under the rib cage on my left side.

It was a process to arrive there- a mental game I played for about 12 hours.  But, I got there.

You might have Cowden’s Syndrome if…  you have ridiculously large “stable” lymphangiomas on your spleen that outsize the spleen itself.  Because, hey, we grow things.

You might have Cowden’s Syndrome if… it occurs to you as you’re teaching that you are actually acutely aware of the previously mentioned spleen.

You might have Cowden’s Syndrome if… you then proceed to launch into a logical, rational series of scenarios, while completing your math lessons.

You might have Cowden’s Syndrome if… you know that the day may end with you in surgery, yet, you still make sure your daughter has the follow-up appointment she needs for the knee that has its own Cowden’s related issues.

You might have Cowden’s Syndrome if… you can carry on a conversation with your teenager through 90 minutes of traffic while simultaneously setting up your strategy… just in case you need your spleen removed.

You might have Cowden’s Syndrome if… you can get everyone settled at home and then sneak out to the “mall” (read Urgent Care) in hopes that a doctor will tell you your spleen is just fine.

You might have Cowden’s Syndrome if… while you are waiting for the doctor, you access the sonogram report from your last spleen scan in February.  Scanning the spleen is a regular occurrence, so you have the “mychart” app open and ready.

You might have Cowden’s Syndrome if… you listen as the doctor tells you he’d like to get you to the Emergency Room “as soon as possible” to address the abdominal swelling and rule out a rupture.  You thank him for his time, shake his hand, decline his offer for an ambulance because your gut tells you it’s not THAT bad, drive yourself home and figure out how you’re going to travel to a hospital where you could possibly handle surgery if you needed it.

You might have Cowden’s Syndrome if… you’ve been through enough atrocious hospitals to know when to stay local, and when you must travel… just in case.

You might have Cowden’s Syndrome if… you contact your job to let them know you’ll be absent the next day.  Because, even if you don’t have surgery you’re sure it’ll be a late night.  And then, as you hang up you start to wonder if you did the right thing.  Because, sick days are hard to come by, and you can get by on little sleep, and maybe you should have waited till the morning.

You might have Cowden’s Syndrome if… you reassure your husband all is well, while helping your anxiety filled daughter get to sleep.  All before you mention the need to get to the ER.

You might have Cowden’s Syndrome if… you can calmly text your husband what you’ll need for your bag, just before you’re sure your daughter is asleep.  Then, explain to him that you’re driving yourself.

You might have Cowden’s Syndrome if… you can lovingly reassure, while starting to feel a little nervous inside, because, you do what you have to do.

You might have Cowden’s Syndrome if… you call a friend or two from the car, with your full on brave voice, just to pass the time.

You might have Cowden’s Syndrome if… you drive to the ER, park the car, tell the attendant in the garage you’re not quite sure when you’ll be back, call your husband to tell him where you put the parking receipt, and walk into the ER to check in.

You might have Cowden’s Syndrome if… you don’t even have to provide an insurance card because your information is so active in the computer.

You might have Cowden’s Syndrome if… the triage nurse says “What?” three times as she takes your blood pressure and asks about your medical history.

You might have Cowden’s Syndrome if… you can watch the attending from your “bed” in the crowded hallway “Google” Cowden’s Syndrome before she comes over to you.

You might have Cowden’s Syndrome if… you have to catch yourself from acting like a know-it-all when that same attending speaks as if she studied Cowden’s extensively, and tells you “spleenic lymphangiomas are not a common presentation of Cowden’s Syndrome.” You just nod instead of asking “Exactly how many patients have you ever met with this syndrome?”

You might have Cowden’s Syndrome if… you take a picture of your IV once it’s in.  Because that’s a thing in our family.  No, it’s an actual thing… really.

You might have Cowden’s Syndrome if… you check your “mychart” app so regularly, you know to the minute when they are coming to take you for the CT Scan because it is in as an “appointment.”

You might have Cowden’s Syndrome if…you can wait better than most people.  You can settle into your “chairbed” in the hall, while people are ill and vomiting, and you’d rather be anywhere but there, and you can keep your blood pressure and heart rate calm.

You might have Cowden’s Syndrome if…you view the “registration” people as vipers traveling through the corridors with iPads, getting sick and out of sorts people to sign away.  It’s about the money and the bills that will follow you for months anyway.  And you can actually see snakes while you look at them, even if it’s not who they are because you are so furious that they regularly delay people’s requests for help until they sign “this last form.”

You might have Cowden’s Syndrome if… you knew to pack two battery chargers for your phone, a t-shirt, and a bottle of water.  The bare necessities in a hall where there was no one to attend to you and no plugs.

You might have Cowden’s Syndrome if… you can resign yourself to drinking a full container of lethal tasting contrast dye while ordering yourself new sneakers on amazon, and a few gold bars for “Candy Crush Soda Saga,” because, hey…it’s the little things.

You might have Cowden’s Syndrome if…the attending who ‘googled’ you hours before, is fully perplexed at your visibly swollen and tender spleen and your negative lab results.  So she says, “That’s not what I expected.  It’s good, but unusual…”  And you laugh to yourself.  Hard. In your brain of course.

You might have Cowden’s Syndrome if… when the CT results come back as “multiple stable hypodense spleenic lesions” and that same attending says, “you should follow-up with your primary doctor tomorrow,”  you smile in your head again.  You know this means the spleen is safe for now.  You know this means no emergency surgery.  You also know you already explained you DON’T HAVE a primary doctor, because seeing a million specialists means sometimes you lose track of what “routine” means.  Plus, no one is too interested in being your (or your daughter’s) case manager because “rare disease” is high risk.  But, you take your walking papers because tonight your spleen won’t rupture.  And, hey, it’s the little things.

You might have Cowden’s Syndrome if…before you sign your discharge they mention an “incidental finding” of some spinal deterioration that you should “probably point out to your primary doctor,” and you can’t quite stifle the laugh that time, as you are reminded about taking the used car to the mechanic… and the fact that no one is really listening to you anyway.

You might have Cowden’s Syndrome if… you can see the vipers slithering around as you gather yourself, stretch your side that feels exactly as it did when you walked in, and navigate your way out.

You might have Cowden’s Syndrome if…you wake the parking garage attendant at 2:30 AM and retrieve your car.  You head home relieved, grateful, and overwhelmed.

You might have Cowden’s Syndrome if… you actually contemplate heading to work in 4 hours to save the sick day, but think better of it.  You plan the morning with your husband, text your daughter her directions, remove all traces of the hospital from your body and slide into your bed.

You might have Cowden’s Syndrome if… it takes you a few minutes to settle as you contemplate your “night out” and you wonder if a night out will ever again include fun, friends, and wine.

You might have Cowden’s Syndrome if…you think about the number of times you and your daughter have been to the hospital courtesy of this syndrome, and you wonder how many more there will be.

You might have Cowden’s Syndrome if… you want to get mad.  Really mad.  But, you can’t.  Because after all, you get a warning system.  You get to check it, scan it, and test it, BEFORE it ruptures, and BEFORE it spreads.  You know how tired you are, and how sick of it you are, but you also know how fortunate you are, and how SO MANY people would actually give anything for that warning system.

You might have Cowden’s Syndrome if… you miss your friends, but you know there will be time again.  Eventually.  And in your heart you know they are all there.  You miss socializing, ever.  You wish a night out wasn’t bridge and tunnel tolls and a parking garage at a hospital.

You might have Cowden’s Syndrome if…you are not quite sure you have the physical or emotional strength, or hours in a day, to get through the next few weeks.  Yet, you strengthen your resolve and readjust your mind into tiny, manageable chunks.

You might have Cowden’s Syndrome if… you spend way too many hours calculating and reforming your strategy to remain grateful and

#beatingcowdens

A REAL Love Story

love

I’m not one for Valentine’s Day.  Never was.  It didn’t matter to me if I was dating or single, it just never made sense.  The “Hallmark Holiday” seemed determined to bleed money out of people who shouldn’t have to work so hard to prove themselves one day a year.

If you love someone, prove it every day.  It’s not about the big things.  It’s about the things that matter.

Picking up someone else’s mess, doing someone’s laundry, a random hug, an “I love you” that’s real and spontaneous, treating each other respectfully all the time… and so on…

My husband and I decided years ago to exchange only cards on Valentine’s Day.  I already know how much he loves me.  We do what we can to get a little something for our girl, well, just because.  And we, we try to get organized and celebrate our anniversary.  The day we stood before God and our families and friends and pledged our “for better or for worse,” and “in sickness and in health.”  Because those vows – they matter so much.

Tomorrow I will head to Manhattan for three of my annual appointments, carefully timed to cost me exactly one day off of work.  I will see the oncologist, the breast surgeon, and the endocrine surgeon, with some blood work thrown in for good measure, and the results of a sonogram from Saturday checking on that bumpy spleen of mine.

I will return in time to have parent conferences at my daughter’s school.

Not a “romantic” day by any means.

I will wear a red shirt that says “Strong” and I will make it work with a smile.

Because, I will be thinking of this heart.

img_6210Last year in January, my Grandfather fell.  It was after a trip to the grocery store.  We later found there was stroke activity, and that January day began a slippery slope that ended with his passing on March 3rd.  If you know me personally at all, you know my grandparents were larger than life to me.  That’s it.  They were 70 years married, and even though Alzheimer’s had largely robbed Grandma of much of her memory, my Pop loved her with his whole heart.

Last year, coincidentally, my grandparents spent Valentine’s Day in the nursing home at the same time.  And, although I’m not totally sure either was aware of the date at the time, we were.

A few days after Pop passed, my uncle sent the picture above.  He was cleaning out the linen closet and tucked in between some things was this heart.  By every rational account it must have been purchased by Pop, for his love, on that day in January when he made his last shopping trip alone.

My Pop was a man that planned ahead.  He was a man who always thought of his wife, and lived every day loving her with his whole heart. And my Grandma, well, she’s pretty special herself, and she’s always been quite fond of chocolate.

Nothing flashy, nothing fancy.  But he saw the hearts early, and thought of her.  That’s how he rolled.  Always kissing her hello and goodbye, clipping roses from their rosebush, and doing what he could, even when there was nothing more he could do.

My newsfeed, and my heart have been full lately, of people struggling and suffering.  The prayer list is long.  There is pain and sadness and worry.  But within, there is also love, and gratitude and compassion.

Life is about balance.

I’d rather spread out the love to last all year.  I’ve got plenty to share.

For it is with love alone that we hold each other up.

Love for those around us, and those who’ve gone before, motivates us.

Grandma is still “here” but many of you understand when I say I miss my grandparents.  The love though, the love and the example they set is imprinted forever in my soul.

It is with Love and Gratitude that we find the strength to remain

#beatingcowdens!

_dsc0071

 

It’s not a sprint… It’s a marathon

life-is-a-marathon

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

I guess I run- in a metaphorical sense.

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

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

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

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

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

never give up

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

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

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

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

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

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

“Obviously she needs a higher dose.”

“What was the TSH?”

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

“WHAT WAS THE TSH?”

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

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

Finally…. “10.54”

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

“Only the T4 and its normal.”

“Why not the T3?”

“It’s not relevant.”

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

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

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

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

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

“Well we will see in 6 weeks.”

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

Onward to the doctor search.

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

mc-alex-and-ani-its-not-a-sprint

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

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

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

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

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

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

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

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

Tonight I stopped at the mall and bought these.

alex-and-ani-its-not-a-sprint-its-a-marathon-expandable-wire-bangle-russian-gold

 

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

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

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

The whole identity theft thing seems almost ages ago.

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

running-a-marathon-all-your

No worries – We are BEATINGCOWDENS!

 

 

Sometimes I forget

Sometimes-I-Forget

Sometimes I forget that Cowden’s Syndrome is not just Meghan’s – it’s mine. If I am to be precise, it is Meghan’s BECAUSE of me.  And I say that not out of guilt, but more as a point of fact. And I had plenty of time to think about THAT – and the rest of the week – in the MRI this morning. mri_machine Last summer when I saw the oncologist, and the surgeon about the 4 sizable vascular tumors on my spleen, they were unsettled.  I fought hard for my spleen.  I felt I owed in to my emptying insides, currently missing my uterus and ovaries.  I “won” a 9 month reprieve.  And not the sentence is up for review.

So as I arrived at the facility at 9AM, and by the stroke of those angels, found on street parking in NYC, I dutifully filled out the intake papers.  Papers that, well between Meghan I, I have lost count of the number of times I have completed.

Any chance you might be pregnant? Asks the male technician who brought me back.  Even though I had written the date of my hysterectomy on the intake papers, I dutifully replied, No.  Not that I ever WANTED to be pregnant again, but you know sometimes they could read…

Any implants in your body?  Metal, I asked?  No, ANY as he clutches the paper I spent 15 minutes completing – unread.  Yes, I have breast implants – a double mastectomy 2 years ago.  I gestured toward my purposely selected “NO, They’re not real – the real ones tried to kill me” shirt.  Not even a smile. no they aren't real Why are you having this exam?   By now I am ready to scream JUST READ!  But I know better.  I have played the game too often, and the man you yell at now could be the one inserting your IV in 10 minutes. Because there are 4 tumors on my spleen that are being monitored.

HOW DID YOU FIND THOSE?  asked the non- reader. Well, I have Cowden’s Syndrome – and we tend to grow tumors.  So they were found accidentally during another scan.

Oh.

That was the end of the medical talk.  Maybe the words “Cowden’s Syndrome” stumped him.  Just as well.  Directions on what to take off and what to leave on.  Locker key in hand, I was led up the stairs by the non-reader to the tiniest MRI machine I have ever seen.  (and I have seen quite a few.)  Meghan did some time in this machine during the 3 hour MRI debacle of her hand last summer.  I felt a wave of nausea and I am not typically too freaked by these.

“How did I end up in the tiny magnet?” The non-reader, still with me, grunted that I was the thinnest one in the waiting room.

 Not sure if that was a backwards compliment.  Thank you ISAGENIX – I think. isalean-bar-chocolate Grateful I had held my tongue it became apparent that the non-reader and I were in this together.  As he told me to lay down so he could start my IV.  I sat straight up.  My daughter gets a few things from me.  I sat up and had the IV placed so the toxic gadolinium could drip slowly though my body.  I laid down, closed my eyes and kept them closed the whole time.  I am pretty sure my nose would’ve been almost at the top.

And as I spent 30 minutes amid the noise and banging… “Breathe in… breathe out… stop breathing.  Breathe normal.” breathe stone My mind wandered.  I hadn’t given much thought to the MRI, or the reality that it COULD indicate growing tumors, and another surgery.  For so many reasons I have blocked the thought.  But, now its too late.  It’s like telling a secret.  The images have been shot.  The report will be read next week.  The reality that already is has been exposed, and I just get to wait and see.  Cowden’s Syndrome.  We grow things.  It’s what we do.

I am grateful maybe, for the insane pace of life.  For the full time job.  For the daughter who swims, and has PT and doctors galore.  For the car that won’t go into gear – the 1996 that has likely seen its last trip – but can’t be replaced right now.  For the paperwork that keeps me on my toes, and sometimes drowning a bit.  For the letters that need writing, and the never ending list of phone calls that need to be made. time struggle I am grateful even for the “calm” day, when we didn’t have much to do – until I noticed a bulge in the sidewall of the tire Thursday.  So I grumbled a bit, then thanked my angels and headed off to Costco, where they put on the donut and told me to come back Friday. I did, and the tire is new.  The car is safe.

So I logged onto my online bill pay to see what had cleared and got the shock of my life as the zero balance hopped off the page.  Phone in hand immediately calling my bank.  Apparently it only took someone a day to extract $2000 from my life, and start a cycle of more unending paperwork.

Two hours at the bank yesterday, an hour at the Police Station. My only wish for the dimwit who decided to pay his credit card bills with my money is that if he REALLY wants to be me – he takes the whole deal. The doctors, the tests, the tumors, the bills, the anxiety, the WHOLE thing. wind After all, its’s only fair… if you want to take someone’s identity – you should knwo what you are getting into. Sometimes I forget I have Cowden’s Syndrome.  I am always sure Cowden’s Syndrome doesn’t have me.  There are too many other things vying for my attention. breathe As the non-reader said, “Breathe in… Breathe out…. Stop Breathing.  Breathe Normal.  OK your test is finished.” HA!  If only he knew…

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