Isolation

I have had a lot of time to think about a lot of things since my vocal cord surgery on March 3rd.

Blog from March 4th

One of the things I’ve thought about is how I feel a little bad for kids/teens today.  I know most are over-indulged, and don’t lack for things.   But, these last 16 days, having to be very limited, and conscious of my voice use, I’ve texted- a lot.  And, I find it completely unfulfilling.

Please don’t misunderstand, texting has its place.  At full voice, I use it often.  But, if there is a topic where voice inflection, emotion, or feeling matter, I can usually talk it out.  I can’t help but think that MOST teens today have little idea how to hold an actual conversation, and that the digital media age is limiting, and severely dampening their interpersonal skills.  The constant texting leads to misunderstandings,  misinterpretations and a general feeling of loneliness that just doesn’t have to happen.  I know – because right now I am living it.

I spend a good deal of time communicating online. I use Facebook, Instagram and Twitter.  I blog as often as I can.  I “meet” others around the world with Cowden’s Syndrome.  And I am so grateful.  Typically, the internet is a major source of secondary communication.  Except right now – it’s a lot of all I’ve got.

I am still at a point of severely restricted speech.  There were significant cuts made into both of my vocal cords.  I need to practice the exercises given to me in vocal therapy.  AND, I need to be quiet.  Often.

I can speak a few minutes each hour, in a gentle voice.  But, the rest of the time I carry my phone to text my family.  Conversation is brief, and sometimes frustrating by no one’s fault.  Tension can rise quickly.  You find yourself on edge.  It’s a wild form of isolation to be present, yet unable to communicate the way you want to.

I like a nice quiet day alone as much as the next person.  The thrill of being on my own to watch a few shows on Netflix was not lost on me.  I have appreciated the silence I so often wished for.

But, like everything, I’ve also learned too much of anything is not a good thing.

I retreat to avoid my natural posture, which is lips moving.  I am ALWAYS talking.  So even when my family is around, I’ve taken to “hiding.”  It’s necessary for the healing.  But, I’m over it.

There will be about 4 more weeks of gradual movement towards full speech, all building to a (hopefully final) post-op visit on April 13th.

In the mean time, I appreciate your texts.  I appreciate your Emails.  I appreciate your support.  I am trying to store up these times of silence to see if they’ll help me through when life gets too noisy.

“You can have it all, just not all at the same time,” a wise friend once told me.

I look around at adversity, illness, tragedy, and loss.  I am aware of my blessings.  I am grateful.

I am also honest.  I live my emotions so they don’t get the best of me.  I laugh hard, and cry hard (although both are frowned upon as the voice recovers.)  It’s all about balance.

So for now,

#beatingcowdens 

will have to be done quietly.

 

 

“…plans to give you HOPE and a future.”

for_i_know_the_plans-66441

When you’re in the middle of it, it’s often hard to see it.  You’re in the middle of it, trying to be careful, protective and nurturing.  You’re in the middle of it, often wide awake hours longer than your body wants to comprehend.  Sometimes you’re terrified.   Sometimes you’re confident.  Often you’re in prayer.  This thing.  It’s big.  Too big.  Like a giant web with unmanageable offshoots.

Somewhere in between trying to get back to school after a night in the ICU last Sunday, and this Saturday morning when she woke, not ready to swim, but with a raging 102.5 fever, I lived a few years.

The last few nights I’ve lived a few more.

Fortunately, I take pretty good care of my body, and when she’s well I make covering between 7 and 9 miles a day a priority.  I make eating well a priority always.  I invest in nutritional cleansing by choice.  It’s a lifestyle.  I focus on taking the stairs when I can.  Laughing with the elementary school children as I hit the 4 flights in our building over and over is good for me, and them.  Some people train for marathons.  I train for life.  It’s a bit of a marathon itself.

Buddha-Quote

It’s quiet here.  Nothing stops a conversation faster than telling in honest frank terms the newest challenges Cowden’s has thrust in our faces.  Last week there was the trouble breathing and the debacle of no answers at the ICU.

Tuesday the orthopedist recognized uncharacteristic tightness in al her muscles.   Her hips and legs were in full spasms.  He was confused.  Updating him on what was new since our last visit included the D&C amd precancerous cells in the uterus.  It included letting him know she is now on 10mg a day of progesterone.  To say he was unsettled be an understatement.  He let us in on his fears that the hormones were causing muscular issues, and that he feared her vascular malformation could indicate a tendency towards blood clots which this hormone level left the door wide open for.

Sigh.  Growl.  He left no bones about where he stood.  He withstood our questioning about risks and benefits.  He disagreed with the hormones.  End of story.  I asked if we were to return in 6 months.  I was told 2 months.  He’s concerned.

And as the week went on she continued to just feel worse.  For the second week in a row, only one swim practice.  An indicator of the severity of things.  By Thursday I reached out to the Adolescent Gyn.  She called while we were in the pediatricians office stating how poorly Meg felt.  All the suspicious virus tests came through negative.  CBC was normal.  Our Pediatrician spoke to the Gyn.  With reservation on her part, and too much “soft evidence” cited by him. the decision was made to pull the hormone.

no guarantee

This is NOT a decision to be taken lightly, for so many reasons.  The least of which, yet still significant, is the generalized body discomfort that came with the months prior to the D&C, and prior to the hormones.  It was torture for her.  Then, there was the clear declaration, (because everyone likes to speak to the very smart 12-year-old,) that this hormone treatment, this move to arrest cellular growth in the uterus was the BEST way to help ward of cancerous tissue trying to form.  In other words this hormone causing chaos in her body was her best shot at avoiding uterine cancer.

So to be in my head was not a good place.  To be in the head of my girl…  No words.

She woke up Saturday morning very unwell.  I don’t recall the last fever.  This one was 102.3 at 9AM.  Back to the pediatrician we went.  Tamiflu and 2 antibiotics.  Hit whatever it is hard, real hard, and keep her out of the hospital.  That was the plan.

So far it seems we’re on the right track.  The fever is waning.  The breathing is sometimes tricky.  The phlegm is thick.  She’s tough.  She’d hydrated.  She’s resting.  She’s doing her part.

There are decisions that have to be made while #beatingcowdens that no one should have to make.  There are guesses and speculations we have to play into, with no guide and no proven statistics.  We have to focus on today.  We have to make decisions based on today, and quality of life issues right now.  But even these are insanely complex.

We have a strong girl.  We are thankful.  We have a God who has a plan.  We are thankful for that as well.

There are times, as humans, we want to know more.  We want a guarantee.  We want insight into the plan.  It is a sign of our weakness.  We are working on it.  Our God will continue to guide us, strengthen us, and move us forward.  Be need to breathe in peace and faith.

Some days this is not an easy task.

faith peace

To our friends, please know we don’t hide.  We don’t avoid RSVPs to be difficult.  We don’t back out at the last moment because we want to.  We miss you.  We are anxious for easy, comfortable gatherings.  Life just seems to toss things in the way – often enough it gets difficult to dodge.

It’s ok if you don’t have words when we throw heavy stuff on you.  It’s ok.  Sometimes just to listen is all we could ever ask for.  Please listen.

We have not lost touch with your lives.  We understand we are not alone in challenges.  Do not feel you have to protect us by not sharing.  You trusting us, makes us feel valuable.  It makes us feel we matter to you.

See just because #beatingcowdens has overtaken our lives doesn’t mean we’ve lost touch with reality.  We want to see your baby photos, and hear about first steps, and awards, and sporting events.  Call. text, Email, write.  Know we haven’t left you for a better deal.  We, like you, are just keeping our heads above water.

We remain always, #beatingcowdens

Recovery

never give up

 

 

Recovery.

We should be professionals around here.  We should just get up, get going and move on.

But we are human.

We hurt, inside and out.

We get tired, and lonely.

We understand the tired and lonely that others have too – but some days it doesn’t make ours better.

Some days its hard to look at things from someone else’s point of view.

And that’s OK.

This one is a favorite of a dear internet friend :-)

This one is a favorite of a dear internet friend 🙂

Meghan is full of exhaustion and pain and conflicting emotions.

It’s annoying to realize you blew your whole summer at doctors and in surgery.

Thankfully we snuck in that Disney trip.

I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.

She has a smaller network.  Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.

there is no pain i cannot fight

Yet, she is my hero.  And my rockstar.

I shuffled her around these last few days a lot more than I wanted to.  But, she likes to stay close by me when she is hurting.

So yesterday we picked up the car.  Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust.  He declared my car “not broken.”  Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.

It’s definitely still broken.  On to the arbitration with the Better Business Bureau.  Just in case someone thought we might rest.  No worries.  Gloves are on.

She went with Felix and I for our physicals last night.

Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records.  (Really WHAT was I thinking staying close to home for a doctor?)

She is tired.  But she smiles.  And she hugs us.  And she asks for pain medicine.  And she wiggles her fingers.  And she looks at her pool, and the calendar, and she feels the inevitable.

I can’t stop it.  No one can.

So we keep busy.  We rest.  I stay close by.  We giggle and make jokes.  If I had to “lose” a summer, I couldn’t have lost it with a better young lady!

Recovery.

No worries – WE GOT THIS!

no one sees

 

It’s a Thin Line…

It’s a thin line between love and hate.  That’s how the story goes right?

thin_line

These days I feel I am walking a very thin line, teetering tenuously between confidence that I will end on solid stable ground, and terror that I will just fall off.

Balance has never been one of my strong suits.  But I try.  Every moment of my life I try.

tightrope3

It’s a thin line:

between paid work and “real” work

between schedules and chaos

between strong and terrified

between education and being “over informed”

between smiling and crying

between a cider drink, and a few ounces of straight rum

between prevention and over protectiveness

between not screening, and missing it

between realizing everyone has struggles, and  feeling overwhelmed by your own

between knowing it could be a whole lot worse, and wanting to crawl into a corner and give up

between a vacation, and a time to catch up

between feeling lonely and being alone

between cancer and “precancer”

between prevention and overzealous

between holding your girl as she cries in pain, and crying the night away yourself

between asking all the right questions, and asking too many questions

between BEATING COWDEN’S, and giving in…

It’s a thin line.

tightrope2

I am walking it every day this month, as the schedule changes constantly, and the number of days I had nicely confined so as not to overtake our summer quickly begin to envelop July.

I am walking it, as I wait for call backs that never come on time – cell phone pressed into my fingers.

I am walking it as I wait to schedule haircuts, and dentist appointments, and things that “normal” people do.

Why do I ask so many questions?  Why do I push for answers no one really wants to give?  Why?

Because if I don’t – who will?

It’s not going away.

BalanceBoardImg

When I walk the line with Cowden’s syndrome, and vigilance on one side – ignorance and denial seem to be on the other.

I don’t plan to fall – but if I do, I know where I need to land.

Forgive my whining…

… but no one else seems to want to listen.

I am tired.  Not just the physical tired, but the mental and emotional tired too.

My body is exhausted.  Tomorrow I head back to work.  Two major surgeries in 3 months.  I think my incisions might be healed, but I am just so wiped out.

This recovery from my hysterectomy has been nothing short of obnoxious.  The bleeding seems to have subsided, and the pain is gone.  The restrictions are still in place, but the hardest part has been feeling so damn alone.

Days go by, the phone doesn’t ring.  Not a text message to check in.  Not expecting fanfare here, but a little love from my friends and family would be nice.  Now there are a few.  There are always a few… but even with them, I am lonely.

That loneliness hasn’t helped me feel better.  No.  Not one bit.  Combine that with the fact that my dear husband, who truly tries his best, is in school 2 nights a week, and has worked more overtime in the last 2 weeks than he has since December.  He can’t say no.  Not in this economy.  And he so rarely gets called.  Timing sucks.

So it has been me, and my girl.  She is awesome.  Yesterday when we realized Daddy definitely wouldn’t be home, and we were dangerously low on food, she came to the grocery store with me.  She didn’t let me lift a thing.  She packed the cart, packed the bags, and carried them right into the house.  She is awesome.  But, she is tired too.  She is always willing to take care of me.  But she is 8.  A friend would make for a much better weekend.

So, today I took her with me to a meeting at my church.  Remember a few weeks ago when I said, “I don’t have a problem with God…it’s His fan club…?”  Well that is getting more true by the day.  I can actually say I was disgusted by my minister, and a large portion of my church.  The church where I have grown up for the last 38 years.  Things are tenuous between the pastor and myself, I would say largely due to his LACK of support, but he did not even greet my daughter or myself at the meeting.  She is so astute.  I am trying to channel her energy away from anger, but she feels the hurt in me.

I know there is a plan here.  One larger than me, larger than any of us.  I do believe strongly in God and His guiding hand.  I have been blessed with several miracles, and witnessed others.  I know He is here, but I do not often understand His  plan. 

So, in the midst of all the chaos, the drama, and the confusion, I seek solace in music.  I remind myself that these people who are so painfully absent – don’t mean to be hurtful.  Those full of drama are lacking the bigger picture.  I never lose touch with the reality that I am not the only life struggling.  There are so many others, so much worse off.  But for now, for right this minute, it doesn’t change the fact that I am sad, scared, and lonely.  No one really wants to hear it, because they can’t fix it.  But its true.

I have always believed everyone does the best they can with what they have where they are.  So, even amidst my sadness, I do not have anger.  People have their reasons. 

Tomorrow I will go back to work.  I will smile brightly as if I was without a care in the world.  Even if my bones ache from exhaustion, and my heart aches to share this pain with those I love, I will smile.  I will get through the days, one at a time.  And I will always have a song in my heart to help me.

http://www.youtube.com/watch?v=skQQRhhZZQg

“He Said”
(feat. Chris August)

So your life feels like it don’t make sense
And you think to yourself, ‘I’m a good person’
So why do these things keep happening?
Why you gotta deal with them?You may be knocked down now
but don’t forget what He said, He saidI won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He saidWho you are ain’t what your going through
So don’t let it get the best of you
Cause God knows everything you need,
so you ain’t gotta worryYou may be knocked down now
but just believe what He said, He said

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said

Don’t fear when you go through the fire
Hang on when it’s down to the wire
Stand tall and remember what He said

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break…

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said