My Wish

What would I do?
What would I do?

I have been quiet this week.  That in and of itself is unlike me.

I am tired – well bordering on downright wiped out.

There are a few more weeks of summer to go, and aside from a well planned Disney Trip, set in place in January – there seems to be precious little to look forward to.

Meghan has a short list of “have tos” which I plan to do EVERYTHING in my power to work out for her, but really every effort I made to keep this summer better – to “streamline the doctor visits” seems to have failed miserably.

Today she began her summer homework.  While it is reasonable, it is one more thing on a list of “have-tos” for a kid that just wants to be a kid.

There is no camp for Meghan.  It is all doctors appointments – all the time.  And when it is not her appointments it seems to be mine.  She is swimming three nights a week on a new team, at least she is LOVING that – but we have barely been inside our previously overused pool.

Wishes 1

And its funny, while she and I have both had appointments of almost equal number in the last few weeks, I feel so much less stress about mine.

The geneticist  the endocrine surgeon, the gyn oncologist, the abdominal MRI, the plastic surgeon, and the oncologist.  The spleen survived its next cut – and can live for another 9 months.  The 3.5 cm roundish lymphangiomas are stable.  That’s all we ask for now.  The thyroid lymph nodes – not suspicious enough to biopsy.

The plastic surgeon, well the LOVELY woman offered me a boob job to correct the “asymmetry” caused by me shoving the reconstruction all into one day.  Not this year, but thanks.  Good to know the offer stands indefinitely.  For now, I have other things to do.

So I have only one more of my appointments lingering, a late July follow up with the breast surgeon.  I thought of blowing it off and then realized how dumb that would be – for so many reasons.  So, I will go.

But Meghan’s appointments, those are the ones that keep me up at night.  Those are the ones that strike fear and anxiety in the core of my soul.  My heart beats outside my body in this little girl.  I can not sum up in any number of words the depth of my love for her.

So to say this summer, and especially this week has been sheer hell would be the understatement of the century.

worry 2

Her appointments began the day after school ended.  The lengthy thyroid sonogram bought us another 6 months.  The pituitary function test was a train wreck, but the call this week claims the results were OK.  I want to feel more relieved.  But its hard.  I am waiting to read the report myself.  “Doubting Thomas?”  Maybe.  Realist – probably.  Something is not quite right, but at least its not SO wrong it has to be addressed today.

The geneticist began to speak of carnitine issues, and I am waiting to hear of a possible muscle biopsy.  In the interim I bought carnitine.  Lets see if we can cut that one off.

The vascular surgeon examined the wrist, painful since early June, and the knee.  He wants an orthopedist on board, but wanted me to consult with the rheumatologist about the wrist, and then scan the knee that had the 4 surgeries, because its been over a year.  The rheumatologist concurred on the MRI studies, so we went forward with the wrist first.

Saturday, as I wrote about previously was hell on earth.  I have been through a lot of MRIs with this kid, and the behavior of the two techs scared me to my core.  I was assured upon exit, that the results would be available to my doctor Monday that passed.  Well multiple calls, over the course of Monday and Tuesday led to a promise the results were being released Tuesday.  “It’s a complicated read Mrs. Ortega.”

Wednesday morning  – still nothing at the vascular surgeon’s office, only to find the CD and report left by courier at 10 am.  They will make it by 3 I was told.

A return call to the surgeon’s office at 4:15.  “They just got here, but the doctor is gone – emergencies.  He should be able to look at them tomorrow.”

Some time around 4 AM my daughter climbed into bed between my husband and I.  She had been awake long enough to finish her book, but she just couldn’t settle over the pain in her wrist.  At about 6:15 this morning she nodded off.  I tried desperately to find my peace.

God's got this

And all day today, again, I held my phone.  We skipped the pool in between the “have tos” of getting the oil burner cleaned and our annual trip to the dentist (normal stuff.)  I refused to be far from my phone.  But as minutes became hours, my hope dwindled.

A call to the office at 4:30, “Sorry, he never made it in today, but Meghan’s chart is on top of his desk.  He has office hours tomorrow.”

Six days.

Unnecessary torture.

Six days.

Wondering, worrying.

Even if the report – by some freak of nature reads “normal” I can’t even be pleased, because the pain is not normal.  It is real, and it is consistent, and it has gone on too long.

I wish for a lot of things in the world.

I wish for children and their parents not to suffer with illnesses or adversity of any kind.

I wish for relief for those in physical, mental, and emotional anguish.

I wish for peace in the hearts and minds of the caretakers of those who struggle.

But today I also wish something else.

I wish that EVERY SINGLE medical professional who performs a test – from what is perceived as insignificant, to critical recognizes the power of their words, and their actions.  I wish that EACH of them understand what it is like to be on the receiving end of cryptic messages, grossly extended tests, and precious little reassurance.  I wish that EVERY doctor who receives a call from a patient panicked about their results be PROMPT in their response.  I wish that EVERY one of them, who goes to work each day and forgets that our child, parent, sibling, loved one exists will at some point in their life be on the waiting side.

I WISH for every one of them – from the techs, to the couriers, to the office staff, to the doctors- to have the opportunity to await the results of a test from someone they love dearly.

Then MAYBE, just MAYBE they will understand our torture.

Hang on Meghan.  Summer is coming.  Hang on.

summer

 

Bra-less in Walt Disney World!

I just returned from 9 days in sunny, HOT Florida with my family.  We had our 5th annual trip to Disney to celebrate Meghan‘s birthday August 9th.  I now officially have a 9 year old!

The trip was great, and I will have loads of things to share over the next few days, so bear with me.  But this is the thought I had to share first.

I spent 9 days in Florida and I didn’t wear a bra – not once.

Now I was never huge.  Prior to my mastectomy I was a B cup, C if I had gained a few pounds or wanted to make myself feel better.  So, when I was discussing my reconstruction options for the new boobs with the plastic surgeon, she was a little surprised when I told her I wanted immediate implants instead of tissue expanders.

She told me that just isn’t the way they do things anymore.  She said she wouldn’t have enough skin to maintain my existing size.  So I said, “OK, go smaller.”  Now she was a pretty small woman herself, but she still spoke to me for quite a long time, wanting to be sure I understood what I was saying.

I did.  You see my surgery was as much about my daughter as it was about me.  I knew that tissue expanders required fills.  I knew that that meant more trips to the doctor.  I knew that it meant an additional surgery for the implants, and I knew several people who had suffered enormous infections with them.  I also knew I had to get home to my daughter and get about the business of recovering – quickly.  So, if that meant I had to go down to an A cup – so be it.  It supported the weight loss all the recent stress has brought.

After the surgery I wasn’t unhappy at all with the “new” girls.  Once healed I got used to them, and grew more confident.  So, when I went shopping for vacation I got a little daring.

All those shelf bra tops. the yoga ones, and the skinny strap camisole tops – well I had a few, and I bought a few smaller ones.  Then, I tried them on with no bra.  THAT was something I never dared to do before.  I jumped, I bounced. I checked.  Nothing moved.  And, since I lost my nipples to the surgery – nothing stuck out.

Well I spent 9 days in Florida, with minimal hot flashes, helped along by my moisture wicking tops, and no bra.

Best part of all, I am sure NO one had a clue.

After all that has gone on, if I don’t find the bright side, I will crack up.  So here it is, just for you – the shots of me Bra-less in Walt Disney World!

TWO bathing suits to pick from!!!!!

I never owned a 2 piece suit in my life… even though you can’t tell! 

Sorry about the strange head tilt… Never owned a suit that wasn’t primarily black either!

CAN I HAVE A WOOHOO?  THERE ARE BATHING SUITS AFTER A MASTECTOMY!

 Today after a few annoying things happened (like setting up Meghan’s appointment for Friday morning with the stupid surgeon, and fighting with a credit reporting agency over an old identity theft issue)  I got to try on my new bathing suits. 

Now, this (almost 39 year old) body, is in no condition to model, but I was so very excited I had to share. 

Since the mastectomy I have had a lot of work getting used to my new boobs.  They are smaller than the old ones, and that seems to be just as difficult to adjust to as if they had become bigger.  It just changes everything – the way everything fits and feels. 

I have also had to get used to no underwire – in anything.  That has been an understandable, but difficult transition. So, I have pretty much transformed my closet into tops that worked for me.  Lots of new T shirts, a couple of dress shirts that still need a tuck at the shoulder to tighten them up by the boobs.  But all in all – its going ok. 

When I first put on last years bathing suits I did cry a little.  I had to immediately put all but 1 (which was salvageable, but not great) up in the attic.  Not only did the boobs just not work in those suits, the stress of the last few months has taken off some pounds.  So they were a mess. I ordered 1 suit a few weeks ago.  My husband made me take it off because he said it made my boobs look fake.  (LOL… newsflash honey… )  But I understood. 

Got these in the mail today and got the seal of approval on both.  I have some nerve showing them here… but I want to know what you think. 

So come on tell me – black, pink, or try again? 

Have to have some fun, right?