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.

 

 

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?