Experience Dictates Your Reality

I usually have a plan when I sit down to write.  Typically there is a topic, or a concept in my mind or on my heart.  But, as is clearly evident by the two months of silence on this page, I’m struggling.

Having a PTEN Mutation, and being the mom of a young lady with a PTEN Mutation of her own has been nothing short of life-changing.  Things that happen in our lives change the course of our travel along the path.  That statement is not even intended as a judgment, just a factual statement that most people can relate to.

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Sometimes when we are talking in the car, my girl and I play the game of “what if?”  It can be a dangerous game, or it can be cathartic.  For us it is typically the latter.  No matter how many ways we can come up with that things “would have” or “could have” happened, we are always sure that we have become who we are because of the turns our road has taken.  And, on most days, we like ourselves.

Experience does dictate your reality, though.

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Two or three people observing the same thing will interpret it to some extent based on the experiences that have brought them to this point in their lives.  That is neither a bad thing or a good one.  It simply is.  And to understand each other as humans, it is something we need to recognize.

One of Meghan’s Christmas gifts was a T shirt that says “Humankind- be both”

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It was chosen for her deliberately because it is something she believes and aspires to.  being in a high school experience where she meets many young adults from a variety of life circumstances, she is developing an even deeper understanding of the situations in our lives that create who we are.  She is happy there.  She is accepted there.  Life stories are understood, and often unspoken.

Where we have been, what we have seen, and what we do with those experiences are such an integral part of our lives.  Many of them we can control consciously and fully, while others take a lot more work to harness.  The hardest things to get control of lie deep in our own hearts and heads.

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The day after Christmas we made the gut-wrenching decision to put down our Lucky girl, a lab/ border collie mix that had been a part of our family since Christmas in 2005.  There was sparsely a memory Meghan had that did not include Lucky.  And the absence of the clicking of her paws and her animated noises leave our house a way too quiet.

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We have our beautiful April, a mutt rescued very quickly after our beloved Allie passed away in December of 2014.  Lucky needed April to distract her from her own broken heart.  And she did an outstanding job.  April is finding herself now, as an “only” while we all navigate through a new phase of life with one dog.

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If you have lost a pet you understand the gravity of the loss and how it changes the dynamic of the family.  If you have not, you’ll have to trust me.  Or not.  It’s up to you.

Three of us, well four if you count April, are grieving Lucky’s loss.  Yet, we are all doing it differently.  Lucky lived here, but she was Meghan’s dog.  She came in to our lives when Meghan was only 2.  Experiences were different for all of us, yet the depth of the loss runs deep.

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Experience and personal reality are intimately connected.

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Almost two weeks ago I fell at work.  Hard.  It was so frustratingly avoidable.  I caught my foot on a child’s chair.  My brain and my feet were not communicating.  There was nothing to break my fall except my shoulder as it hit the base of another chair.

I stayed on the floor for a few moments trying to recover.  Looking up at the faces of 30 third graders gasping “Are you OK?” I knew it was essential that I at least look the part rather quickly.  I got myself to my feet, mumbled an independent assignment for them and got to the phone to get some help.

After completing paperwork and gathering some ice, I was sent out to seek medical attention.  After spending a few hours having x-rays of a foot, two knees and a shoulder, I was sent home to ice and rest.  I was also told to contact my plastic surgeon.

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No it was not a disfiguring fall, except part of what broke the fall was also the right breast implant.  The one just under the still slightly off-color shoulder.  It felt very “off” and it was impossible to ascertain whether the fall had somehow caused the implant to rupture.  I needed an MRI.

I could not get any associate of my surgeon to physically see me.  The fall was on a Tuesday, and my doctor ONLY sees patients on Monday.  So I was left to schedule the MRI and wonder.

The looming appointment was not nearly as bothersome as the wonder.

People fall every day.  Depending on age, physical fitness, the circumstances of the fall, they will all have a different reaction. If you have a PTEN Mutation, which led to a breast cancer diagnosis and a double mastectomy at the age of 38, and that double mastectomy was followed by silicone implants, which already had to be replaced in 2016, and you fall on and near one of the implants from a height of about 5 foot 7, well your reaction might very well be to worry about that implant.  Mine was.

I just wanted someone to look at it.  I wanted someone to tell me the visible changes were not to be worried about.  But, no one would do that.  So I was left alone, home healing, with full access to the internet.

DANGER.

While I have learned a good deal of what I know about my body and Meghan’s through skillful sorting through ‘fake’ and ‘real’ information, equally available on the internet, I now had plenty of time to investigate what had been a mention weeks earlier in one of my on-line support groups.

Breast implant associated anaplastic large cell lymphoma, or (BIA-ALCL) is something I never heard of until it was brought up in discussion by another patient with Cowden’s Syndrome.  I now had all the time in the world to fully investigate and I was getting furious.  While I do not put my faith fully in any source, I will link in FDA pages here.  A careful eye will notice that most links when searching this condition are plastic surgeon sponsored.

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm239995.htm

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm064106.htm

For those of you interested, clicking the links above is likely to give you information you never heard before.  Unless maybe your surgeon was much more forthcoming than mine.

I was relieved to learn I had the “smooth” textured implants, the ones least likely to lead to BIA-ALCL.  I was disturbed to read the FDA recommendation the implants be evaluated via MRI 3 years after initial surgery and every 2 years after.  No one had ever mentioned an MRI to me post mastectomy.  Ever.  But that shouldn’t be a surprise.  A complete search of all my paperwork from the initial implant surgery and the revision failed to uncover ANY documentation of ANY potential additional cancer risk.  Being diagnosed with a condition that had greatly increased my likelihood of so many cancers, I may have thought things through differently.  Maybe I would not have.  But regardless I would have felt as though I had made informed decisions.

Now I was just mad, hurt, and violated.

And, I was dealing with a trauma to the area surrounding this foreign object in my body, causing visible swelling, with no one to calm my angst.

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By the time I got the call post-MRI that there was no rupture, I also read the report that said basically nothing other than the stability of the implant was evaluated.  A wordy disclaimer.

Risk of BIA-ALCL is rare.  There is no documentation as to whether our subgroup is any more affected.

It doesn’t matter anymore.  I will at some point in the not so distant future move to have these objects removed.  “Superfluous tissue” is what my mom called her breasts 22 years ago when they were removed.  She never had implants.  She’ll be 70 next month and is feisty as a firecracker.

I think I found my motivation to stay thin and spry.

Our experiences influence our reality.  All this from an unfortunate fall.  Even as I sit here almost 2 weeks later, the pain in my foot telling me I’m not sure there is not an un- diagnosed fracture there, I have to wonder if that fall was that unfortunate after all.

I decided finally on a primary care practice.  I stopped looking for one who knew or cared to know anything about Cowden’s Syndrome.  Instead I found one capable of screening me for the things any 45 year old needs to be screened for.  I think I may finally be at peace with that decision.  I had “well-visit” bloodwork Saturday, and I will have my visit with the staff’s FNP on Wednesday. I will talk to her about my basic asthma and allergy medications, as well as the script I usually hold for occasional migraines.  I suspect all that will go well.

Then I will talk to her about the fluid in my right ear.  The fluid that has been there for at least 5 months.  An ear ache in early September brought me to urgent care.  That repeated 3 more times, in October, November and December.  Each time there was an antibiotic.  Once there was a referral to a sub-par ENT who have me a steroid.  Sometimes the fluid leaks out of my ear while I sleep.  Sometimes I swear its finding it’s way out of my eyes.

My mother has terrible sinus problems.  She has since she’s been my age.  It’s probably rotten genetics not PTEN related.  Mucinex keeps me away from infection and eliminates the pressure for 4 or 5 hours at a time.  But this many months of Mucinex has a tendency to make the spleen angry.  And I don’t want to get sidetracked talking about those splenic lymphangiomas.

I want an MRI of the sinuses.  I want to know nothing sinister is going on.  Then I want to see the ENT who did the surgery to save my voice 2 years ago.  I’m hoping we can get that process started on Wednesday.

The calendar is foreboding.  We are heading into a doctor cycle – both of us.  And while I am grateful for the lull, I get familiar feelings of anxiety and dread as I lock the long afternoons in traffic into the calendar.

My daughter has the formal diagnosis of Post Traumatic Stress Disorder secondary to medical trauma.  There are people who like to pass judgment on that.  I wish they wouldn’t.

Her service dog will come eventually.  People will have a lot to say then too.  I won’t notice because I will be exuding gratitude at all times.

Everyone you meet is fighting a battle you know nothing about.  Be kind always.

The struggle is real.

Experience dictates your reality.

The trick is to realize while everyone leads a different life, that reality is the same for all.

Humankind – be both.

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#beatingcowdens

 

 

 

 

 

 

“Lucky” Number 13

People count all sorts of things.  Among the things we count are surgeries.

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Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in.  And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information.  We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports.  (Saved her another stick today when I could produce a recent normal liver enzyme panel!)

So today, surgery number 13, was not a surprise.  It was anticipated and planned very deliberately for months on end.

The day started before 5, scheduled for a 6 AM arrival.  But, in reality it started last night.  Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.

We got up and out quickly.  No fanfare.  No time for a “selfie” of the three of us in our “Never Give Up” T-shirts.  We checked in just past 6 and shortly after were performing all the typical surgery routines.

It is funny.  There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries.  The first group understands surgery “routines.”  The second group raises some eyebrows.  They are horrified at our use of the camera in the hospital.  But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.

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We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.)  Several consent slips were tossed at me.  The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask.  Felix was given the necessary garb to walk into the OR.  I stole a few extra minutes to clarify the plan with the orthopedist.

And I must confess there was some major anxiety.  See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery.  That’s why we coordinated surgery times.  Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary.  This was a far cry from the report after the MRI in January when we were told another embolization was necessary.  But, it was now in the moment.  They had a plan and I had to play along.  The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary.  He also promised me he would do his best.  What more was there to ask, I guess.

In the waiting room I thought.  Too much.  But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.

After about three hours we were greeted by the orthopedist.  His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.”  He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.

She woke up slowly, but well, and soon she was alert.  While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers.  She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice.  Lots of ice.  For Meghan.  And for me- as I managed to bang my head on the table.  Insert exhaustion here.

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The pediatrician on call was relentless reviewing the three sheet medical history.  Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.

Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician.  I have to tell you she succeeded on really aggravating my last nerve.  She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions.  By now the fatigue was starting to set in.  I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me.  I explained carefully that I was jaded by years of dealing with sub par medical professionals.  She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications.  Whatever…  Truly.  Spend some time learning about Cowden’s or ANY Rare Disease.  Then we’ll talk.

'I'll give it to you straight - This disease is almost IMPOSSIBLE to pronounce.'

Arrogant self- importance.  Ugh.

We were called down to radiology at 2:30 so the feet could be X-rayed.  The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy.  Results tomorrow.  In the mean time his caring makes him my current favorite.

Pain medications in place.  Crutches safely in the corner.  Lights are off.  Movie is on.  And the day is just about over.

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Tomorrow we SHOULD be home.

For now, number 13 is in the books.

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And my happiest news of the day came when the anesthesiologist said

my girl was “stable and strong” during surgery.

The little things are HUGE!

Thankful for the prayers and the guardian angels…

Tomorrow is a new day for BEATINGCOWDENS…

Now, we rest…