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!

Perspective… with a touch of fatigue and frustration

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

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

perspective einstien

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

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

justkeepswimming

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

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

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

several days at once

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

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

thyroid biopsy

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

tired-of-waiting

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

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

I-plan-God-laughs

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

you-got-this

I think.

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

rare disease day

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

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

Christmas Letter 2012, and some unexpected happenings

Disney – August 2012

This is the letter I send in my Christmas cards… shared for my “on line” friends.

“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34

December 2012,

Dear Friends,

It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus.  This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.”  Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.

Life in the Ortega house continues to be one of adventure.  We are blessed.  Meghan excels in school, and loves to swim and dance.  Medication allows her to move her body without pain.  We are grateful each day for each other, as it is that bond that allows us to weather the storms of life.  And there have been some this year!  Some time in early spring, Felix joked that I should start on my Christmas letter.  He wasn’t kidding.

We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”

We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist.  We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ.  We have been scanned repeatedly – each MRI separate.  Sonograms of every body part you can imagine.  All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.

There is so much overlap as to how everything came together this year that it is even hard to summarize.  I feel like sparsely a week went by without an appointment – many of them in NYC.  I laugh now at the days I swore I would NEVER drive in the city.  I don’t use the word “NEVER” much anymore.

In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee.  The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap.  We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.”  Again, not if, but when.  So we wait.  She will be scanned again in February to determine the status of the very stubborn AVM.  Cowden’s Syndrome complicates any vascular anomalies.

In March I underwent a “prophylactic” bilateral mastectomy.  After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step.  Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction.  The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast.  The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.

Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later.  A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy.  So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.

A month later we took Meghan for her thyroid scan to Sloan Kettering.  We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area.  So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.

Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney.  Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists.  I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!

In the midst of our medical “stuff,” life continued around us.  In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan.  A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed.  Our hearts will never be quite the same.

Meghan and GGpa

Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps.  No one is quite sure exactly what happened, but it is evident that the angels held her that day.  She suffered a serious head wound, and severe bruising, but broke nothing!  She spent days in ICU, and returned home the end of that week.  With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day.  I admire my grandparents.  As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it.  They are role models to us all.

Love my Grandparents!

Their marriage reminds me that God gave me a great gift when he sent me Felix.  I can say that we share such love through God’s grace – that I can not imagine my life without him.  He is my soul mate – and my sanity!

I guess I leave you with – to be continued.  No words of wisdom this year.  We are trying our best to take it one day at a time.  The tree is up.  We have our hearts and our heads focused on what matters.  We certainly have had plenty of lessons!

We would love to hear all the things that are new in your home!

Warm Christmas Blessings,

Lori, Felix, Meghan, Allie & Lucky Ortega

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story

*****************************************************************************************************

See, and just when I thought it was safe…

The cards were in the mail Sunday night.  I was getting it together.

Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.

I stopped at the stop sign.  I looked to my left down the one way street I have traveled so many times before.

I was clear… and I drove.

3/4 of the way through the intersection…

I really did love my Hyundai

I didn’t see the SUV until it was in my rear driver side door.  I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.

His car ended up a block away.  There had been no braking.  No horn.  The impact shut his car down.

As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.

The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.

I have laughed and cried a lot over the last 24 hours.  I am grateful that I am walking and moving.  I am tolerating the muscle spasms and bruising.

As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood.  What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.

The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to.  Maybe… just maybe.

So I think of my little love.. and I am so happy she is safe.  And maybe that thought is where I will draw my peace.

“Sometimes your blessings come through raindrops…”

Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….

Anyone else looking forward to 2013?

“If I get to keep my spleen…”

As I sat in the dentist’s chair a few weeks ago getting another bridge organized, I enjoyed pleasant conversation with my dentist.  I know, that may sound strange, but really she is quite pleasant, and very talented at what she does.  She is also the Mom to twin friends of Meghan‘s from her class, so we have known each other over 4 years now.   She is a mom, wife, dentist, photographer, fellow blogger, volunteer, and a generally nice person to be around.  I am grateful to call her a friend.

As I was getting ready to go she asked me when she could schedule me for scaling and root planing.  After I had her explain the depth of the cleaning that was involved, and even after she explained WHY it was a good idea, my instinctive answer was , “NEVER!”

English: 29px Sharp top of a periodontal scale...
English: 29px Sharp top of a periodontal scaler Deutsch: 27px Scharfe Arbeitsspitze eines Scalers (Photo credit: Wikipedia)

Over the last 6 months alone I have had breast cancer, a double mastectomy, with reconstruction,  and a hysterectomy.  I have been scanned, had countless MRIs, and just recently completed a colonoscopy/endoscopy.  To say I am DONE being poked and prodded would be the understatement of the year.

So, as I listened to her careful list of reasons why this scaling and root planing procedure is a good idea, I just wasn’t sold on the concept of ANY more pain.

I told her, “When they tell me I can keep my spleen, then I will make the appointment.”  She laughed out loud.  But this, this is what life with Cowden’s Syndrome has become.  I am willing to celebrate being allowed to keep one of my organs, with a dental procedure that is probably quite necessary anway.

But, I feel like life in this body is about triage.  I have to take care of things one step at a time.

Traube's space
Traube’s space (Photo credit: Wikipedia)

So, the oncologist called today about my spleen.  They were comparing the ultrasound pictures from April on 2012, and November of 2011 with an MRI in August 2012.  She sent it to a lot of people to look at.  The answer..maybe.

Really, are you surprised?

You see the ultrasounds showed identical, medium size “hamartoma.” (PTEN  Hamartoma Tumor Syndrome is the umbrella term for Cowden’s and several other related Syndromes)  But, the MRI showed 2 distinct, and one fairly large “hamartoma.”  The good news about these is they are benign.  The problem is – if they follow the body’s tendency to grow and grow things, they won’t be able to stay there too long.

I know, you can live without a spleen.  You can live without a uterus, ovaries, a cervix, breasts, and a whole host of other things.  But, just because you CAN do something, doesn’t mean you SHOULD.

So, I will go back in December and repeat the MRI.  While they are there they can make sure the tiny cyst on my kidney stayed tiny too.

As soon as they are done.  Once they tell me it is all stable, and I can keep my spleen.  I promise, I will be a big girl and get my scaling and root planing done.

At least I have a kind, gentle and pleasant dentist – and she is looking to keep things IN, not take them out!

You can read more from my friend Gracelyn at : http://blog.silive.com/gracelyns_chronicles/2012/09/gracelyns_50_random_thoughts_o.html?fb_action_ids=3988683720816&fb_action_types=og.recommends&fb_source=timeline_og&action_object_map={%223988683720816%22%3A431582393573191}&action_type_map={%223988683720816%22%3A%22og.recommends%22}&action_ref_map=[]

AND: http://gracelynsantoschronicles.blogspot.com/

Biting through the cage

My dog Lucky is a bit neurotic.  She just is.  So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.

Lucky (the black one) and Allie, playing together.

It got me to thinking though.  No one, or thing – really likes to be caged.  The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time. 

What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.

We feel like that sometimes here – about PTEN, and Cowden’s Syndrome.  We feel like we are stuck, in a locked crate.  We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.

Meghan’s fevers this weekend scared me.  I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process.  And, I swear if they were not related before, they feed off each other now.

The fever was gone Sunday night.  It made another showing of about 102 and then that was it.  She stayed home Monday with our friend Patty, and was treated like the princess she is.  By the time I came home Monday she looked so much more like herself.

We went to the pediatrician Monday night.  He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having.  Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI.  She is going to get back to me.  I have no idea where we will fit one more doctor in – but we will figure it out.

So this morning, we woke up feeling ready to go.  She responds so well to antibiotics, that we were seriously on the mend.

After she brushed her teeth she complained her gums were bothering her.  I didn’t see much. 

Tonight she said it was much worse.  There is a growth on her tongue.  Right on the edge.  It grew today.  During the day.  No idea why.  No clue what to do about it.  I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.

I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.

Someone told me today I looked tired.  Not me.

If you need me, I will be biting my way through the crate, getting rid of one bar at a time.  Maybe Lucky las the right idea.

Serenade

I am sitting in the basement on the computer trying desperately to ignore the cricket serenading me from some other corner of the room.  My family has been asleep for hours.  Silently I have struck a deal with this insect, that if he stays far from me, I won’t try to squish him. 

Not a big bug fan, and since a quick google search shows me a photo of one of his distant cousins, I have strengthened my resolve not to meet the cricket tonight.  I don’t mind bugs, when they live outside where they belong.  I just don’t like them taking residence in my house!

So, he continues to sing, as I put 4 stamps on the CD of the sonograms of my abdomen from April and last Novemeber.  I included the reports and a cover letter to the oncologist.  Off they will go tomorrow, and hopefully they will safely arrive.  See I am really and truly ready to hear the definitive word that the spleen stays.  One more week…

Week – what a week it was.  I swear I am still sore from the boxes earlier in the week.  A true sign that I lost a lot of strength post operatively.  But, I am moved in.  And, after 2 hours on a Friday afternoon after the students, and most of the teachers had left – I am largely set up.  Finally!

Meghan loved her 4th grade teacher, even if it isn’t the one she originally wanted.  This one has all the skill, kindness and compassion of the other.  It will be a great year for her – academically.

Still so many medical questions unanswered.  I am so intrigued as to how a pituitary that is over working can be too small.  I am even more intrigued that this keeps only me, and apparently the cricket, up at night.

Answers.  I need answers instead of more questions.  But I fear it just isn’t to be.  So, I will head to bed before I am forced to meet the insect that has been singing my lullaby for the last 2 hours.

Random Reflections – nothing profound today!

We tried another church today.  This time all three of us went.  A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless.  Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

Førde Church, a typical Protestant church in N...

God has a plan.  And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.”  I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me.  So we will see.  At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day.  Glad we got in a swim yesterday.  It may have been the last one.  We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner.  Hoping its nothing too serious. 

We got to spend the afternoon with my grandparents and my parents.  Last minute plans are always a treat when we get to be with family.  Pop was 93 last week.  Grandma will be 92 in 2 weeks.  GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday.  She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things.  I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend.  She told me I could get it Tuesday.  I chuckled.

No matter how hard I try…  “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday.  I will not physically be able to have the CD burned until Friday.  They will get it in about a week and a half.  At which point she nicely reminded me that it could be serious.  To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think.  But, what I meant was, I have undergone 2 major surgeries in the last 6 months.  I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one.  Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD.  I will get the results of Meghan’s blood test and MRI.  I will call Meghan’s school and sort out the busing mess that is developing for the first day of school.  I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed.  I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work.  We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine.  LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!