overwhlemed 1

Yep.  Totally and completely overwhelmed.

I know I am not the only one.  But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

overwhelmed 2

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July.  I couldn’t wait for schedule free days.  Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year.  The July calendar makes me nauseous.  Literally.

swim overcome

I mean we might have gotten bored eventually, but we have barely been near the pool.  I say bring on the boredom.

Most of our appointments are in Manhattan.  That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity?  day of the week?  air pressure?  There is ABSOLUTELY no predicting.

We could take the bus.  But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do.  So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack.  Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time.  Sometimes we are late.  Always we wait, and wait.

overwhelmed 3

Meghan is the most well-behaved child.  I don’t lie because there is no need.  I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit.  For hours and hours.  I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice.  There is no traveling to Manhattan at 4 pm, on a school night.  It just can’t be for either of us.  So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years.  She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

Meghan july413

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool.  Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week.  Thinking.  Asking.  Wondering.  Worrying.

Today is a good day.  Daddy is home.  The ultimate distraction for her.

We had a long talk this morning, me and my girl.  I tried to push her to reach out to some friends.  To go and be carefree like she should be.  Even if its only for a while.  Everyone has something we reminded each other.

I still can’t shake my need for order.  I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing.  Sucking away hours that should be spent on the beach or in camp.  Forcing a little love to grow up way too fast.  Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today.  Just the license.  It fell out of my pocket.  For $17.50 I ordered a new one on-line.  Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina.  They don’t know what they are up against.

overwhelmed 4

The beach… and all her other plans – I will do my best.

Just trying to get by one day at a time.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂
The thought for the day...
The thought for the day…

“It’s probably nothing, but…”

don't worry

We are two for two this week.

Monday the orthodontist referred us back to the dentist.  The OVERGROWTH on Meghan’s gum may warrant an evaluation, and possible oral surgery.  But first – to the dentist Thursday.

Tonight, an annual eye doctor exam.  Admittedly we are 3 months late.  There was the hurricane, and then Grandma fell, and then the car accident, and then… it was January 29th.

I knew her eyes were worse.  She told me she couldn’t see the charts in the room.  Her teachers asked when she would have another eye evaluation.

She had gone since kindergarten without a new prescription.

The onset of headaches, correlated with the decline in vision over the last three months makes me uptight.

eye chart

She read 20/50 and 20/70 WITH her glasses on.  I almost threw up.

Cowden’s syndrome and its tumor growth, and general overgrowth potential. can lead to the wildest imagination.

But, my husband’s sisters, Meghan’s paternal aunts, have terrible eyes.  So maybe…

Then they took the picture of her eyes, and compared them to the visit of October 2011.

“Well, maybe my machine is just darker today,” says the doctor.  “But there is some shading on the right eye I think you should have looked at.  It’s probably nothing, but…”

Famous words.  They usually lead to a Cowden’s Syndrome mess.

Not much literature on the retina and Cowden’s, but then again, there aren’t too many of us – relatively speaking.

Who am I to guess.  I am closing in on 40 and just now considering my first pair of reading glasses – right on time.

I keep saying that I will call at work. Then I spend the day doing my best to put out out small fires.


And all of a sudden its time to go.  Off to another appointment.

Tomorrow I will call the “retinologist.”  Who knew?  Thursday we will see the dentist.

Two glasses of wine tonight, and I feel like I have been beat.  What a day.  Early to bed – no doubt.

“It’s probably nothing, but….”

Just in case I should rest up.


“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/


It’s Friday.  And, the only medical office we have been inside of since after my colonoscopy Tuesday is the dentist.  That’s a perfectly normal place to go, and the dentist is kind, and painless too.  Three days.  One appointment.  And a “normal” one at that.  Plus, no cavities.

This is exciting in my house.  Everything we do seems to be peppered with a test or an appointment. So when it’s not, it’s time to celebrate a brief glimmer of normal.

Today I had appointments – but they were for the betterment of me, in the most psychological way.  Nope, not a psychiatrist.  I had a gel manicure, my eyebrows done, and then Meghan and I went for haircuts.

To top it off, while she went to a well run, fun “God squad” meeting, I snuck out for dinner with a really cute guy who makes me laugh a lot.  We even have matching  wedding bands!  🙂

So, tomorrow is the blood work to see if the WBC has begun to rebound.  Tomorrow for the blood, Monday for the pediatrician.  Tuesday for the fabulous Dr. Jill at PT, Weds. for another doctor… to be named later.

But for today – my little girl and her one of a kind necklace seem to be on the up side of healthy.  She is about to go to bed, and close out today with her award-winning smile.

Today.  Today is good.  We are here.  Together.  We had only fun places to be.  Today I am thankful for all the people who I crossed paths with. 

Trying not to worry about tomorrow.  Lord knows tomorrow has enough worries of its own.