“Dear whatever doesn’t kill me, I’m strong enough now. Thanks.”

I needed today.  For so many reasons.

Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.

We all slept.  Late.  All three of us.  I mean 10:00.  A good sign that we – all three- are shot.

IMG_0423

I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk.  And she was sensitive to the touch, so it was even hard to rub her.  But everything is a little better at 10 AM.

And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills.  I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.

Because we got home, and then Felix made lunch.  I stayed home with Meghan and her “better but not gone” stomach pain.

After that he took the working car to get the wood for the deck railing that has completely rotted out.

No one can really explain that – but we are kind of used to it.

The deck – pressure treated wood – was put together between 2000 and 2004.  By all accounts it is falling apart.  And its not from faulty construction.  The base is solid.  The center is stable.  But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting.  Maybe it’s too much sun.  Maybe it’s a stain product we used early in its life.  It really doesn’t matter.  It’s done and has to go on the budget list for a full replacement in the near future.  But for now we patch.

Triage.

triage

The bay window wins.  Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely.  The entire window – hole in the house and all – needs to be replaced.

So while Felix was getting the wood, he priced the window  Tonight we have to do some comparison work.  Then the order has to go in.

But this afternoon I sat still.  For a few hours.  And I really, really, really liked it.

It’s easy to feel guilty.  That there are things that need doing.  There are people who could use our help.  And there are people who need to be visited.  And there are phone calls that need to be made.  But, last week my Mom told me if I didn’t take some time for myself I might lose my mind.  She’s right.  Although I could say the same to her, and most people I know.  It’s hard for any of us to just stop and sit still.

I haven’t written since Monday.  The arrogance I encountered that day kept me stewing for most of the week.  And… I don’t think I’m over it yet.  But I wanted to pull my thoughts together and go at it with a clear head.  But if I keep waiting for a clear head I may have to stop writing forever.  Because the pain my child endures – regularly- is horrendous and worsening.

If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared.  The good, the bad, and the arrogant.

A friend who endures more than her share of struggles with her children placed this on my wall this week.  I can’t tell you how many times I laughed out loud.

what doesnt kill me

 

Tuesday I called the surgeon’s office after school to inquire about the sonogram.  He spoke to me – to tell me that there is absolutely nothing wrong with her neck.

Insert sigh of relief here, right?

So I said thank you, and requested a copy of the report.  It was to be emailed to me within 10 minutes.

And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report.  You see, the local sonogram bothered the surgeon.  So when we went to have it done I watched the screen like the hawk I am.  I watched every measurement, every angle for 30 minutes.  I SAW the exact dimensions from the local sonogram recorded.  And yet the report was the most incomplete one I have ever seen.  It simply said “normal” several times.  It was contained on one sheet of paper, unlike the three I had become used to.

I wanted to be relieved so badly.  I wanted to take a breath and say “whew!”

But I feel the lump in her neck.  And she feels it.

What I needed was a doctor to say, “It’s there and it’s fine.”  THAT would have been OK.  THAT would have settled me down.  But, to say it’s NOT there….  THAT leaves me with a whole other set of unsettled nerves.

And then the phone rang.  Again.  And it was the surgeon’s office.  His secretary told me we needed to go back for a follow up.  I was stunned.  And perplexed.

Why a follow up?  He just told me everything was fine!

The doctor just wants to see her one more time before the summer.

This from the same surgeon who three visits ago NEVER wanted to see us again.

So I set the appointment for June 16th.  And I wondered really what I am supposed to think.

So I got the number for medical records and I got a CD of that exam placed on CD.

I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.

And this isn’t even the pressing problem right now.  Or at least we don’t think so.

The next set of thyroid labs are going to be next week.  We need to see if this new dose is making ANY difference in her thyroid hormone.  If it is, well great.  And if it isn’t… someone needs to start figuring out what’s going on.

There is pain.  All the time.  Terrible pain.  Worse when she wakes up.  And, when she tries to walk, up the stairs.  Or down.  Or if she tries to lift something.  Or bend to pet the dogs.  Or run.  She made it through 18 minutes of swim practice on Weds.  Then I had to help her get dressed.

The pain varies in intensity.  But it doesn’t leave.  And she is frustrated.  And frightened.

Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever.  I can handle this pain a bit longer, but you NEED to help me.  I CAN NOT do this forever.”

worried mom - FBI

No pressure.

I get it Meg.  I get it.  I don’t really get your pain.  But I get the urgency.  I am all over it.  Trust me.

But that kind of pressure will wipe you out.

The GI on Weds. was happy with her progress.   The pathology showed cellular changes all through the GI tract.  She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it.  She gave us the “reflux” diet.  She reviewed medication and supplements.  She made sure I have an ENT appointment – for June 3rd.  She things the upper esophageal damage is caused by a chronic post nasal drip.  And maybe “fingers crossed,” that will be the throat clearing too.  Because if not there is another diet – with more restrictions on the horizon.  But we can’t race.  We will see her in the beginning of July.  We are clear on the directions.  Especially the one that said, “no pain medicine by mouth.”  The damage done by 4 years of NSAIDs will take months to reverse.  If we are lucky.  Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.

That doesn’t leave a whole lot of options.

So from 200mg a day of a strong NSAID to nothing…

celebrex100mg

I ordered some herbs.  Some that have anti inflammatory properties.  I have read and researched them and have sold them to her as the best thing since Celebrex.  They will be here tomorrow.  Let’s all pray I am right.

Some people think she exaggerates, because there are glimmers of smiles.  There are times when she laughs.  There are people who want her to feel better just because time has passed.  Trust me no one wants this more than her parents.

I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all.  We are isolated.  Family and friends alike are often unaware of what to say, or do.  We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear.  We are lucky, fortunate, blessed, to have each other.  We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.

I needed today.  I did random things like taking the 5 gigs of pictures and video off the iPhone.  I uploaded them to shutterfly.  I combined them with the family photos and I placed the first print order since August of 2012.  We are up to August of 2013 now.  You see I used to be all over this kind of thing.  But life… it gets in the way.

And the nicest part about today was looking at the memories.  The smiles.  The happy times in those photos.  You see today I needed to be reminded…

And that is what today was about.

Because next week there is Field Day, with prayers that there can be mobility by then.  And next week there is blood work.  And next week there is swim practice, and so many things that we want to go very, very well.

Today, I needed today.

 

 

The Arrogance Epidemic

arrogance3

Truly. Under diagnosed, and under treated. Spreading wildly. Seems especially prevalent among experienced medical professionals.

Not all are affected. Some are immune. Some resist with all their might.

Some embrace the arrogance. They seem to enjoy spreading it to those around them.

Others hide the arrogance, carefully and efficiently. Until the moment they are challenged. Then they unleash the beast full force.

arrogance

We met again with the thyroid surgeon today. Two weeks ago we requested an appointment because Meghan felt something in her neck. I have learned from experience not to question Meghan. She has proven time and again to have an awareness if her body that defies explanation.

Two weeks ago he felt her neck and declared the lump she felt to be a salivary gland. He said some small lymph nodes surrounded it, but when we came back in two weeks it would all be gone. He said it with a good amount of authority- but not arrogance. He reminded us of her clean pathology report. He directed us not to worry.

And maybe we would have paid it no mind, except that’s not how life tends to go around here.

So, three days after the surgeon declared the “salivary gland” in her neck, we ended up inpatient at a local hospital with an attack of what ended up being severe gastritis.

While they were sorting themselves out, the pediatrician (who is as far from arrogant as they come,) remembered feeling the neck a few days prior. He had deemed it a lymph node, and figured while we were there he’d have a colleague, a hematologist/oncologist give it a feel. She deemed it a lymph node too and sent Meghan for ultrasound.

Just sitting around the hospital with tons of time as they tried to figure out the root cause of the GI pain, we were amenable to a neck ultrasound.

arrogance4

Now I am not taking sides- I have experienced great sonograms and horrendous ones- and witnessed them- in the best and worst locations. So I take reports as point of information, and never shun clarification. But this one clearly said lymph node- almost 2cm. Subsequent blood test ruled out the salivary gland theory as well.

So Thursday, after we were discharged I contacted the surgeon’s office. We had an appointment today, Monday the 19th. I spoke to the staff. I sent the ultrasound report. I asked them to schedule a sonogram at their facility for us to compare the one we just received. I figured we’d see the doctor and then have the sonogram.

Except as we entered the exam room he was agitated. Looking at the ultrasound report clearly for the first time, he said,”this must have been taken before the surgery.” Seeing it was Meghan’s report I interjected- “No it was taken Thursday the 8th.”

arrogance2

Enter arrogance. I swear his whole demeanor changed and it was like the arrogance bubbled up from his toes.

Now I will be honest- I don’t have a history of playing nice in the sandbox when I am pissed, and I don’t do arrogant well.

So, I may not have been the sweetest. But two weeks ago he was very concerned if she’d had fever, or vomiting. He made it a point to weigh her. Now- she spent 6 days in the hospital and no scale? Somehow I let that go.

What I couldn’t let go was his statement that there was nothing in her neck that was enlarged. See, you can tell me there is nothing to WORRY about. That I will take happily. But you can’t tell me nothing is there. Because 2 doctors an ultrasound my daughter and my own fingers tell me there is.

So we’ll get an ultrasound and then I’ll call you tomorrow to tell you nothing is wrong.

From your arrogant lips to God’s gentle ears…

So they had the girl, who just made her way back to school after a week in the hospital wait for three hours. We made it home around 7.

I know the treatment for arrogance when it overtakes common sense. Time to be done with it. A new consult has been established but we wait- so as not to cut off the nose to spite the face…

In the mean time I know we are not the only ones. There are so many good medical professionals. There are so many who take the time to think, and care, and treat. And then there are others.

The problem with Cowden’s Syndrome is the sheer numbers of doctors we see. The problem is hard to avoid.

Plus- as my grandfather once told me- I can be a little difficult to work with.

It’s all about my girl and whatever she needs….

arrogance (1)

Lemons

lemon eyes

Generally I try to be a pretty positive person.  But really I have to say this is getting a bit ridiculous.  I am starting to wonder if I am doing something wrong.  I mean everything feels like a project, every situation an issue.

Its no small wonder people sometimes tire of talking to me.  I tire of telling tales over and over again.  Really, I am not a big fan of drama at all.

And yet, as the precious weeks of summer tick by, and one obstacle after another seems to end up in our path – today I did feel like squeezing some of our lemons in a few people’s eyes.

My constant awareness that it could be worse; my attentiveness to the struggles of others is what keeps me grounded, but it may be even more exhausting.  The prayers for young babies, and new mothers, the prayers for families who have lost young loved ones to tragedy, the prayers for the young children who are ill, the prayers for my grandmas – all three of them dealing with their own health issues… and the list goes on.  I DO know it’s not just us.  But sometimes when it seems to be one lemon after another, I get tired of ducking.

lemon

I know the saying about lemons, and an old cliche is good now and again…

lemon to lemonade

But sometimes it just doesn’t cut it.

Sometimes lemons are, well – just sour.

My girl has been complaining of her wrist and hand since June 4th.  I remember the date very specifically.  And it has been a long 7 weeks.  The last few weeks of school she could barely write.  We tried braces, no brace, resting, ice, heat.  Nothing.  The pain gets worse.  Then the MRI says normal and I want to spit. (Lemon juice in someone’s eye!) Now we wait while the MRI gets reviewed again, and its time to have a surgeon look at what appear to be soft tissue tumors (at least 2 of them) forming on her hand.  One has been there since – forever.  The other appears to have grown in size in the last 72 hours.  I am not surprised they didn’t show up on the MRI.

This is the same child who took 7 sonograms to have her gall bladder diagnosed with “milk of calcium” and after three “negative” sonograms for the obvious mass growing out of her back years ago – the surgeon decided to trust his instincts and ended up removing a sizable lipoma.

This kid breaks all the rules.

And that’s before we even get to the ramifications of the diagnosis of Raynaud’s Syndrome and its implications made off the MRI.  ( I guess that means it was … almost normal?)

So tomorrow I will call an orthopedist to check on insurance issues and to see if they will take a look at this kid.  (This one comes HIGHLY reccomended! :-))She certainly can’t start 5th grade unable to write, and this can’t go on forever.  So, another doctor it is.

It should be easier to get to the doctor after Enterprise picks me up at 10 tomorrow and sets me up with a rental as my relatively NEW car spends one too many days at the “car doctor” who seem unable to fix the problem either.

This is how long I waited on hold – before I hung up the phone and drove there myself…

waiting

All this as we clean out the attic to prepare for the new roof to be installed in a couple of weeks, and we wait for the people to call us back about the class action lawsuit that somehow explains the water damage and dry rot in our bay window.

lemon rainbow

So if I stay stuck on the lemons I may lose perspective, and God knows I need that to get by. Instead of wishing troubles away I pray for the stamina to continue to endure, and endure.  Wouldn’t trade my  life for anyone’s.  But, God give me strength to find the rainbows – even in the lemons.

And as I organize my paperwork – constantly – tonight I write a check to support “Alex’s Lemonade Stand.”  And I pray for all the parents faced with cancer in their children.  It strikes fear in my core, so I do whatever little I can- knowing all too well we can all be tossed into places we would never venture to on purpose.

lemonade alex

And as I reflect on today, I guess it was a success.  We did get into our much underused pool for some mother/daughter time.

swim 1 2013

swim 2 2013

And when all is said and done, and I have had a few glasses of cider, and I can sit down and regain my perspective – I have a pretty cool kid.  This Cowden’s Syndrome thing – it really sucks.  But its such a part of us now, that I can’t imagine giving it up.  We are not defined by it, but it is a part of who we have become.

So in the interim, for those of us who by bilateral mastectomy have gone from a size C to an A cup – maybe this is a more appropriate way to view those lemons.

lemon bra

Couldn’t hurt.  Might help.

Keep laughing.  Keep swimming.   It’s all we’ve got.

Bravery/ Courage

Brave

Bravery – Ready to face and endure pain; showing couragecourage
Courage – strength in the face of pain or grief
It’s not a secret how I feel about my girl.  It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known.  She faces adversity better than most adults I know.  She presses onward with determination, not drama.
I don’t mean for a minute that there is never a hiccup on the path.  That would be delusional, and even unfair for a child who has yet to pass her 10th birthday.  But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.
Yesterday we has testing at MSKCC in NYC.  We were told to arrive by 8:30 AM for testing at 9.  It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30.  Then we would be home by about 2.
So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20.  As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3.  She then proceeded to tell me maybe I wanted to reschedule.
Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot.  The medication would arrive at 3.  We would have our ultrasound at 2.  And everything we left the house for bright and early WOULD be accomplished, before we headed home.
I can be a calm and rational person, at the right time.  But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!
So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”
We took the shuttle to 53rd street and 3rd Ave.  Then we WALKED to 42nd and 7th.  Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed.  The 25 minute walk each way did more damage to her legs than I could have imagined.
Toys R US times square
But, we did get to Toys R US.  Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.
She left with a Merida doll from the movie “Brave.”  Ever so fitting in so many ways.  I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.
brave 2
Why did you like this doll, Mom?        
Because YOU are the BRAVEST girl I know.
The shuttle took us back to MSKCC by 1:30.  We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound.  Then it was back up to the floor for the test.  The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.
And there she sat, for 2 hours, in her chair.  Reading, playing with her iPad, watching movies.  Uncomfortable.  Exhausted.  Brave.  Courageous.
It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem.  But, time will tell, and the waiting game is one we are well practiced at.
So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.
Only to be woken this morning by the ring of the alarm clock.
run-clock
An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street.  The June 4th injury never healed, and it was finally time to get some answers.  The doctors we have seen all have differing opinions.  AVM? Arthritis?
When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many.  We have the pattern pretty much down.
We let the (hopefully) nice nurse pick the IV spot.
courage 2
Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits.  So, after two painful sticks to the left, she ended up with the IV on the side of her wrist.  And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.
My cursory question of “How long?”  Was answered with “Less than 45 minutes.”  It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room.  But, somehow it makes me feel better.
Ear plugs in place, the door closed us in, and she headed into the tube.  My hands remained on her ankles, and I could hear the deep breathing.  It was just her and Merida inside the tube now.  Bravery at its best.
couraqge 1
It was 11:25.
It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.
time-warp
And then it was 12:45, and some time after 1:00 we were taken to another room.  Another room with a smaller tube and a stronger magnet – for a few more pictures.
This doctor, this attending, at the hospital reviewed her images, and wanted more.  This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam.  This doctor wanted more pictures.
So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right.  I gave her an abridged version of my inferences.
Then I chuckled at her response.
If something is wrong with my wrist, how will I do the archery we signed up for in Disney?
We will make it work Meg.  No worries.
And she laid, quiet and still as could be as 5 minutes became 20 before we were done.
So that’s it?  You aren’t going to tell me anything?  I asked the tech.
I am not a doctor was the painful reply.
Understanding they can’t, it didn’t help the growing pit in my stomach.
Your doctor will have the results  Monday afternoon or Tuesday morning.
Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.
Last night I asked when I was going to get a break.
I take it all back.
BEATING COWDEN’S will require stamina and strength I never imagined I could have.
I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.
brave 3

One step at a time

Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)

celebrate

The surgeon said that the hamartomas are there.  They are large, but they are stable.  Stable is a nice word.  So, because they are stable it implies they are benign.  This is another nice word.  The game becomes seeing if they remain stable.  So, in 6 months I will have another MRI.  If they have changed – it comes out.  If they haven’t we can continue to talk about keeping it.

6_months

Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s.  Is it by coming through with the most organs still intact and cancer free?  This is such a strange, relentless disease.  It’s research, while still in its infancy is coming.  But,  I have to wonder how much more they will know a year, or 10 years from now.  And, whether I will like any of it.

We are waiting.  And we know that we are not alone.  We are waiting for Meghan’s results, and its nail biting, agonizing waiting.  But, Felix and I talked tonight and wondered what news would make us happy.  There was no easy answer.

please wait

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous.  They had scored a 3 out of 5 on some scale they use.  He told us they would turn.  We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious.  But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later.  Tomorrow will mark an agonizing 2 weeks since we went for this sonogram.  Waiting.  Worrying.  Wondering.

what if

When they tell you its “when,” not “if,” it changes things.  No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome.  It’s almost like a time warp.  A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.

time-warp

Six months seems to be all you really get.  Well, now what I have lost a few organs, I get a year on those follow ups.  But everything else is 6 months.  For both of us.

I tried to sync them up.  So that maybe the worry wouldn’t seem continuous.  But it hasn’t worked yet.

I try not to think too far ahead.  You know what Mom says about planning anyway.

I-plan-God-laughs And to think about this in constant 6 month cycles, well… forever.  It’s a little too much to manage sometimes.

So, we take it one day at a time.  Sometimes one hour.  Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

neverending road

Patience and Wisdom

I am patient – sometimes.

I am also wise – sometimes.

The trick really might be meshing the two.

patience and wisdomThat’s where I sometimes have some trouble.

I got a call this morning from Dr. S.  The biopsy is scheduled for Tuesday at 12:45.  Pleased to have it scheduled, quick math told me it would still be a week before we had  a definitive answer.  But at least I had the wisdom to shut my mouth and be grateful to have it scheduled.

My next question was about anesthesia.  Had they decided to give it?  In FNA (Fine Needle Aspiration) thyroid biopsies, anything more than a numbing lotion is uncommon.  But Meghan had such TRAUMA from her FNA at  another hospital in November of 2011. We had to push.

I had just told this child she could have cancer.  I just told her she was likely looking at another surgery.  She was unaffected.  “I will have whatever surgery I need to.  Just make sure I don’t have to be awake when they put those needles in my neck!”

This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.
This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.

All day I carry my phone everywhere.  I literally put it down for 3 minutes and missed the call about the anesthesia.  So the voicemail said, “We need Meghan at the hospital at 9AM tomorrow (Friday) to clear her for anesthesia.”

“When?  What type?  Why?  I can get you a cardiologist report from December.  I can be to my pediatrician in 30 minutes, and you just took blood on the 27th.”

“No, we have to see her here at 9Am.”

Patience and Wisdom.

I had pleaded for the anesthesia on her behalf.  Now I would pay the price.  Very careful not to take days off after my attendance debacle last year – I guess I will be at Sloan tomorrow,  ensuring the anesthesia my kid asked for is in place.  She doesn’t ask for much.
PatienceWorking hard on gratitude, I am relieved at least things are moving.  Not on my schedule, but progress nonetheless.

So then my oncologists office called.  They want me to see the surgeon.  The surgeon we first talked about a month ago.  The surgeon who had little more information than he had on December 7th after my MRI.  The surgeon who insisted he needed the sonogram, but whose system at the hospital cannot upload it.  No one thought to send me for another abdominal sono at their hospital – even though I asked.  They would like me to see this surgeon at 10:30 Weds.  They will have to have patience now.  I have a kid to take care of first.  If they were in such a rush I could have been healed by now.

So I am waiting still to hear from my car insurance carrier who somewhere in the midst of all this chaos decided I was totally responsible for the accident where I suffered a DIRECT HIT from a car who took no action to avoid me.  Waiting to hear exactly who that letter of appeal gets addressed to.

All of these things that keep happening, keep me from seeing my Grandparents as often as I would like to.  My heart weighs heavy.  Time and stress are hard to manage.

patience-buddha1-300x248

Patience, I am convinced – is more than a virtue.  It is down right necessary, and almost debilitating with exhaustion.

Patience for me is hearing, “It is likely your child has cancer,” and then WAITING to take care of it.

I get that in the scheme of things thyroid cancer grows slowly, and 2 weeks won’t make or break things. But this is my little girl we are talking about.  May God bless me with the patience to get through the weekend.

hand ove rmouth

And give me WISDOM with that PATIENCE too please?
And give me WISDOM with that PATIENCE too please?

Waiting…

I am waiting.

Still.

I am tired.

I am angry.

I purposefully picked the best hospitals.

I searched out the best doctors.

My goal was to avoid useless waiting.

angry phoneInstead I spend days at a time looking at my phone.

Waiting for it to ring.

I think my new case has marks from the imprints of my hands.

I don’t know what I want… but I want to get out of “the waiting place.”  I spend too much time here and its unhealthy.

An excerpt from one of my favorite Dr. Seuss books, "Oh the Places You'll go!"
An excerpt from one of my favorite Dr. Seuss books, “Oh the Places You’ll go!”

Thursday they said the biopsy should be scheduled by Friday or Monday.  It’s Weds. at 7:30 PM.  No worries.  I have called.  It didn’t help.

It’s a small nodule, the one they are concerned about.  It is less than 2cm.  But, excuse me for being anxious -even 10 year survival rates of about 95% serve as little consolation when the numbers refer to your little girl.

And what about my damned spleen?  Clearly not a medical emergency, but the holidays messed with the waiting there too.  I was told 9 days after they received the CD of my sonogram that it was blank.  Really? 9 days?  No word back from them about a plan either.  I especially loved the part right before Christmas when my oncologist told me hamartomas are “almost always benign.”  Great.  See, prior to that conversation, I thought they were ALWAYS benign!  UGH!

I am trying.  And I will be fine.  I guess some days I am allowed to be tired and grumpy like the rest of the world.  As long as I remember…

dance in the rain

Better get some loud music and another glass of wine.  I think I need to dance the wait away!