It’s Not Over Yet…

Tonight my search for perspective was harder than it normally is.

Tonight I needed a glass (or two) of wine, some time alone in my office, and plenty of music.

And as the lyrics roll through my head in the eclectic mess that spans, Contemporary Christian, Classic Rock, and some alternative memories from back in the day, I somehow start to find myself again.

I am generally a very positive person.  I am able to find blessings in unlikely and hard to reach places.  I make a point of focusing on these things for so many reasons.  Primarily, I find it is necessary to be positive for my health.  While I don’t believe a positive attitude alone will cure illness, I do firmly believe a negative one, or a constant state of stress and worry can worsen illness.  We certainly don’t need that.

But, lately I’ve been frustrated.  I’m even a little angry.  You see – everything is NOT fine.

And I’ve been avoiding my computer because I’d rather write when my perspective is in its proper place.  One of the reasons I love to blog is because I can get right in my head by the time I’m done.  I can typically work through whatever is gnawing at me.

There are drafts in my folder.  Unpublished, unfinished work.  I’ve tried, but I’m struggling.

Logic leads me to retrace the obvious.

In our house the diagnoses came about five and a half years ago.  I was 38 and Meghan was 8.

In most of the people I’ve interfaced with who have Cowden’s Syndrome, their diagnosis is less than 10 years old.  I know there are others, but this is the majority.

There is a growing group of us who are parents.  Now, in my case, my diagnosis was made BECAUSE of Meghan’s.  But, in many cases the opposite is true.  There comes a point where the signs are either apparent, or subtle, and something prompts the formal diagnosis of PTEN Hamartoma Tumor Syndrome, in some form, in our children.

Anecdotally, we are not the only house where the syndrome seems to manifest worse a generation down.  This is a story I have heard many times.

There is a special kind of knot that forms in your stomach and lingers, forever, when you realize that you are somehow responsible, in an unintentional, yet undeniable way.  Your child has this syndrome because, even with a current estimate of a 1 in 200,000 diagnosis it is an autosomal dominant condition, which means that if you have the mutated PTEN gene, 50% of the time, it will pass to your child.

Between us, since Meghan was born in 2003 there have been 30 or more trips to an operating room.  On 18 of those visits I have watched my girl head into surgery.

And I know all the blessings bestowed upon us.  I know the beauty of benign biopsies, and the gratitude of legs that allow for walking when the alternative has certainly been possible.  I know the strength and resilience of my daughter, and the grace of God alone.  I know the grit of a child just out of her 7th knee surgery who understands the recovery process better than any PA she will meet in the surgeon’s office.  I know the feeling of bruises on my knees as I give thanks for my child who is ABLE to recover.  I get it.  I truly do.  I’m grateful.  I am.

But, you know what else?  Sometimes I get angry.  And, that’s OK too.

I’m learning that part of being able to be positive is allowing myself to FEEL and WORK THROUGH ALL the emotions that come my way.  Even the ones that hurt.  Even the ugly ones that don’t have flowers and rainbows attached.

This is reality.  This is our reality.  And I am not about comparisons.  I do not profess to understand anyone else’s reality any more than I could expect them to understand mine.  I do not use words like “worse” or “better” or “harder” or “easier” or “fair” or “unfair.”

What I can tell you about our reality is that 18 is too many surgeries for a 13-year-old girl.

I can also tell you there will be more.  For both of us.

Vigilance, a necessary reality to keep us in front of the astronomical cancer risks associated with Cowden’s Syndrome will lead to more surgery.  And we will hope and pray each is followed by a benign biopsy, or an encouraging word from an orthopedic surgeon trying to preserve a knee damaged by a mischievous AVM.

When I got my diagnosis, I was almost 40.  I was married.  I had a little girl.  I had a home.  A career.

When my girl received her diagnosis she was in 3rd grade.

Swallow that.

It doesn’t taste very good.

Cowden’s Syndrome is isolating.  In addition to numerous food issues, and immunological issues, and significant knee trouble (understatement of the year,)  there are SO MANY doctor’s appointments.  There are countless blood draws.  There are so many days I pick her up at school and we do ANOTHER 4-5 hours round trip in the car, traveling to NYC, sitting in traffic, parking, waiting, sitting in more traffic…

As connected as social media can help you be, there is a lack of connectedness that is inherent with not being there.  Being absent.  Being unable to go on certain trips.  Being unable to do the things kids your age can do…

When I was a child I always “knew” something was wrong with the ridiculous number of surgeries I had, but it was different.  It was not the same as knowing for sure that your genetic mutation was going to guide portions of your life whether you like it or not.

When you have one thing wrong, whether you break an arm, or have your wisdom teeth out, or your tonsils, people seem to know what to say.  When you constantly have something wrong, some type of surgery, or some type of recovery on the agenda, it gets harder for everyone.

People don’t know what to say.  So they don’t…

Cowden’s Syndrome can be very isolating.

What about our children?  What about our children who are being diagnosed younger and younger?  To some extent, yes, “Knowledge is Power,” but at what cost?

We are forced to make the logical choice for necessary screening appointments, and often surgery, while often having to skip social, cultural, or sporting events.

We are forced to say no to social engagements so often, that people forget to keep asking.

Our youngest children at diagnosis may not fully understand the scope of what is now their’s.  But, they will.  If they have a parent with the same syndrome they will watch.  Everything.  If they are the first in the family they will piece it together.  Really there comes a point there is no keeping it from them.  Then what?

I am blessed with a young lady who reads like a book-worm, and has a solid comprehension of people, personalities, and her environment.  I am left only with the option to tell her the truth.

Sometimes the truth gets stuck in your throat, burns a bit, or leaves some nasty reflux.  Yet, still that bitter pill is the only one we’ve got.

I sometimes wonder how different things could have been, if…

But it is my girl who stops me.  Without this diagnosis she knows I would not be here.  My breast cancer was uncovered by her diagnosis and that diagnosis undoubtedly saved my life.  Without Cowden’s Syndrome she knows she would have become someone different.  Someone else.  And that wouldn’t have been right.

While I don’t believe in a God who wants us to suffer, I believe in one who uses that suffering to allow us to become a better version of ourselves.

My girl started Junior High with a broken foot.  During her 3 years there she endured less than perfect social relationships (read, a few very mean children and my child who didn’t always have the patience to contend with teenage normalcy) and 7 surgeries.  SEVEN. Seven recoveries, and pre and post operative visits too.  She did that while holding an average of well over 95% every single marking period.  She did that while making enormous strides as a competitive swimmer.  She did that while learning that she had a the voice of a singer hiding inside.  She did that while performing in several productions, practicing after school for months each year.  She did that while spearheading 3 successful PTEN Fundraisers, essentially putting Cowden’s Syndrome in the vocabulary of our community.  She’s ending Junior High on crutches.  Unfortunate bookends, or a reminder of the strength and resilience of a young lady who refuses to be defined by her disease.

I am sometimes not even sure if she is aware of her accomplishments, as she is so busy pushing onward to stop and notice.

Who sets the example here?

I guess I need to stop hiding from my computer.  Perspective never really leaves.  Sometimes it just needs to be worked through.

This diagnosis stinks.  This syndrome is a real bear to contend with.  It is lonely and isolating and leaves little time to even see family, let alone friends. However, as the saying goes –

And that is probably the real perspective.

And almost as if perfectly timed, I found my title for this blog – as the Pandora radio plays..

“They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you want to settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over yet
And even when you think you’re finished
It’s not over yet
It’s not over yet
Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over…”

(It’s Not Over Yet – For King and Country)

#beatingcowdens

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.

 

 

Speechless

speechless-2

Resting your voice is not like resting your knee, or your shoulder.  Resting your voice is more like resting your heart, or your lungs.

Something is kicking my butt.  And I’m not sure what it is, but I am so not in the mood anymore.

This has been one chaotic stretch.

FInally recovered, mostly from my way too soon implant exchange in August, and my broken toe 2 weeks after, I am battling with trouble in a place I least expected to find it.

This summer I heard, “vocal cord nodules” for the first time, after feeling somewhat hoarse since April.  I was quickly reassured by tons of people that these are “normal” and would resolve if I was careful.  The doctor didn’t say too much, besides directing me to begin vocal therapy and return in three months.

I knew enough to listen when I was told to start therapy, and I did.  Begrudgingly, and convinced it was bogus, I made my way to the recommended therapist.  We got in a few visits before school, and then had to switch to weekly as my schedule just wouldn’t allow more.

For about four sessions I felt utterly ridiculous.  Then I started to “get it.”

I struggled when I started work, and was told to purchase a “tour guide” microphone.  I did, and the small 20 amp speaker with its wireless microphone have been an incredible help.  Despite looking like a frustrated pop singer, I am able to talk longer, and with less strain.  I am learning to speak differently, and in ways that are often unnatural to me, all with the desired end result being to reduce the stress, impact, and inflammation on my vocal cords.

download

I saw the doctor for a follow-up on October 11, and I got a very “Cowden’s-like” mixed report.  I was told that the vocal therapy had decreased the inflammation.  (YAY!)  However, the reduction of inflammation makes me a better surgical candidate. (I had really hoped I could just make it go away.)  AND, there was now a new, or newly visible “striking zone lesion” on the other side.  Both of the lesions were not “typical,” and would not resolve alone.  Both lesions appeared to have vascularity to them.  And, the “striking zone lesion” was irregular in shape.

unusual word write on paper

Despite his 99% comfort that the lesions were benign, I left with instructions to continue therapy, and to plan on having surgery close to the summer to remove the lesions.  I was told for the first time ever, that I would need to practice COMPLETE VOCAL REST for 7 days post operatively, AND for the next 7 days, I would speak approximately 1 minute for every hour.  The next several weeks would entail a slow progression back to my full voice use.  The thought of it completely freaked me out.

At voice therapy, there were conversations about Cowden’s Syndrome, and our tendency towards over-scarring.  The very real possibilities of what excessive scarring would do were discussed in a casual conversation.  By this time I am comfortable, and confident in the therapist.  She is smart, witty, and honest.  She’s real without being painful.  She also cares – about me, as a human, a teacher, a mom and a wife.

So, I had really hard conversations with my husband about the future, and I strengthened my resolve.  I charged my microphone, and I found the voice that exists out of my throat.  I have started to shorten my sentences.  I’m learning.

About 3 weeks ago it started to get worse.  Slowly and steadily worse.  Every day I would do my exercises, and I just couldn’t get the sounds.  My air was becoming a battle.  The inhaler became a part of many days.  I slept as much as I could.  I stayed hydrated and took extra vitamin C.  I ran no fever, but my chest felt full.  My head was pounding.

I stopped using the phone for anything but texting.  That was NOT the turn of events I needed, as I was struggling to keep up with people anyway.

Finally, I went to the urgi-center.  I was told I had “a lot of fluid” in my head.  I changed the allergy medicine.  I took a nasal spray.  I got a short course of antibiotics because it was lingering, even though I had no fever.  I upped the saline, and the steam.

I barely, and I do mean barely, got through the day Friday.

no-talk-md

Saturday I sat at therapy, so frustrated.  She was so patient.  So wonderful.  She told me she had been researching Cowden’s Syndrome, and there wasn’t a lot out there on its connection to the vocal cords.  We had kind of established that even if the Cowden’s didn’t cause the lesions, we still have to proceed knowing my body has Cowden’s and it affects everything.  We can NOT scar the vocal cords.

She had looked at my exams from July and October.  Side by side.  Frame by frame.  And very clearly stating, “I’m not a doctor, but…” I hung on every word.  I processed them with respect.  Some of our best help through the years has come with the premise of “I’m not a doctor, but…”

Vocal rest.  That’s where we’re at right now.  I am supposed to rest my voice when I am not teaching.

This is NOT an easy task.  I’ve been at it for 4 hours now and I may lose my mind.

This is isolation at its worst.

isolation

The lesions won’t heal themselves.  I can just get ready for when I need to heal.  I can prepare for a lifetime of speaking in a way that babies my voice.  I can practice being silent when it is so much the antithesis of my nature.

This time beating cowdens will require patience, strength of mind, and stamina.

It’s messing with me.  But I’ve got this.  I’ve got this.

If you don’t hear from me… try my email.  Or texting.  My typing skills will be improving greatly….

#beatingcowdens

fear1

Hyper-vigilance

Hyper-vigilance.  Although Wikipedia is not my favorite source for all things – it defines this quite well.

Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect threats. Hyper-vigilance is also accompanied by a state of increased anxiety which can cause exhaustion.

hypervigilant1

When we were first diagnosed, and I had a long conversation with a Mom who had been where I was many years before, she told me we would be OK, but we would need to be forever vigilant.  Understanding now, what I didn’t then, is that Cowden’s Syndrome requires more than vigilance, it necessitates hyper-vigilance.

The two are very different.  One is a state you may be in sometimes, when it is necessary.  The other is a place you never leave.  Ever.

I don’t compare illnesses, in the sense of one being, “better, harder, easier, more difficult, more painful…” than another.  That to me is silly.  I know LOTS of people who suffer on a regular basis.  I can’t say I would want to trade places with any of them.  And, I can only speak from my lens.

My lens is that of a mother, who is watching her child battle through a chronic (FOREVER) illness with potentially life-threatening, and definitely life-altering ramifications – while battling that same illness myself.

hypervigilant4

I don’t view us as “sick” people.  As a matter of fact we are regularly called,” The healthiest looking sick people…”  But, we aren’t “well” either.  It gets complicated.  Quickly, and often.

Hyper-vigilance requires me to do everything I perceive is in my power to try to stave off the tumors and vascular anomalies looking to create havoc, chaos and confusion in our bodies.

Hyper-vigilance necessitates monitoring food intake.  Avoiding food allergens/sensitivities because they cause vomiting and severe GI distress.  That means NEVER leaving the house without food.  JUST IN CASE.  It also means spending weekends cooking so that “quick meals” come out of my freezer and not a drive through window.  It means providing the most intense nutritional products I can find to fuel a body that would otherwise be running on empty.  It means driving far and long to get the right food at the right stores.  It means making sure the sweet treats that are allowed are not full of dyes and preservatives because they compromise further a documented severely compromised immune system.

hypervigilant2

Hyper-vigilance means watching the medication intake.  To make sure we don’t forget an antiviral.  Because when we do it sets off a tirade of events that are hard to bounce back from.  It means typing the list, and checking it over.  It means teaching her to know her medicine on sight.  It means avoiding everything we don’t need and willingly taking things like probiotics to help that fragile stomach.  It means knowing that when you have chronic viral infections they are ALWAYS waiting for an “in.”  It means leaving NOTHING to chance, and having spare pill cases in every bag with extra of everything, especially digestive enzymes.  It also means spending HOURS AND HOURS trying to make the mail order medication people get it right.  Which I sometimes think is just not ever going to happen.

Hyper-vigilance means scheduling the doctors.  All of them.  All the time.  It means making sure all the screenings, for all the ridiculous number of cancers we are at an increased risk of developing, are done on schedule.  It means often following up on those appointments, with imaging studies and more appointments.  And then repeating those “unclear” imaging studies, again and again.  It means getting blood work done, often.  Usually at least once every 4 weeks.  It means talking to the endocrinologist and problem solving with him when he admits “it doesn’t make sense” as you strive to help your girl at least feel better.  It involves medication adjustments.  Making sure it’s taken on an empty stomach, and every single day.  It means there is always a list nearby of who needs to be scheduled next.  It’s right alongside the pile of bills that have inevitably been messed up by someone, and now need receipts faxed and hours on the phone to be kept out of collection agencies.

hypervigilant3

Hyper-vigilance is hearing the symptoms every day and trying not to panic.  When there is a headache, sharp and sudden, or a pain in the knee, or the back, or the shoulder, or the leg, and you know your kid is NOT a hypochondriac as some others would like to think, you have to listen, sort, and mentally file all of these.  Hyper-vigilance is keeping track of which ones repeat and which ones go away on their own.  Hyper-vigilance is being very aware, but never panicking.  It’s a fine line.

Hyper-vigilance is Physical Therapy.  As often as we can fit it in.  Because something always hurts.  When one foot is 2 sizes smaller than the other because the treatments for the AVM in the knee cut the blood flow to the foot, so the bone stopped growing, you end up “off sides”.  The hip, the shoulder, the knee.  They all hurt, and it won’t get better.  It will only get managed.  For as long as we can fit in the PT.

hypervigilant5

Hyper-vigilance is also finding balance.  It’s also searching somewhere for “normal.”  It’s making 4 swim practices a week, often on raw nerve.  Because she wants to feel normal.  She wants to compete.  And let’s be truthful, she wants to win.  It’s about me never really leaving the grounds of the college 12 extra hours a week because we are always one step away, and sometimes a half-step from “just in case,” and “what if.”  It’s getting her to drama, because she’s skilled there.  And she fits in.  And the teacher is awesome, and the kids know her for who she is.  It’s about balancing the schoolwork, and doing her best, while teaching her not to beat herself up.  Too much stress is no good for anyone.  Especially when you have this random tumor growing condition that preys on extra stress.

Hyper-vigilance is remembering I have this “Cowden’s Syndrome” too.  It is making sure I am at my best so that she is at hers.  It’s remembering that I sport fake silicone boobs as a constant reminder that I’m not invincible and cancer found me.  It’s remembering they were worried enough to take the uterus and the ovaries too.  It is working hard, at my job, and my life, and showing her it can be done.  But it’s also about letting her know I get tired too.  Because in those moments she sees that she is normal.  And yesterday when I struggled to even walk up a flight of stairs, I saw the concern in her eyes.  And she picked up the vacuum.  And she helped.  It’s teaching her to take care of herself by some days letting her take care of me.

Hyper-vigilance is walking.  Me.  Walking 4-5 miles a day almost every day.  Because my bones are already crapping out.  After 30 years on thyroid pills and 3 years after a hysterectomy, at 41 I’ve been placed on warning.  It’s necessary for me to take good care of me.  To fuel my body properly.  To limit the junk in.  To respect this body because it’s already got a lot going against it.

Hyper-vigilance is making decisions in the moment.  It is having to say no, we can’t go.  It’s not being able to tell people in advance.  It takes away from advance planning, even the fun stuff.  Because life with chronic illness is day by day.  It makes me feel badly, often.  So sometimes I avoid making plans.  I don’t even like to volunteer for too much because I just don’t know whether things will be ok that morning.

hypervigilant6

Hyper-vigilance can be very isolating.

It’s hard for some people to understand.  And I get it.  Because a few years ago it might have been hard for me to understand too.  It makes people uncomfortable that this thing we have is never going to get better.  People feel better when things can be fixed.  But it can’t.  We are not going to grow out of it.  It’s here.  It’s part of us.  Like the ‘elephant in the room.’  But, we understand other people’s problems too.  We get the myriad of health issues that surround us.  And we empathize.  And we don’t need to be sheltered from them.  As a matter of fact, we might like it is sometimes people shared their worries with us too.

Hyper-vigilance is exhausting.  And today I took a two-hour nap.  Because my throat started to hurt.  And my body was giving me all the warning signs that I had pushed a little too far.  I shortened the walk.  I stayed in mostly.

It’s like training.  For real life.  Because there is not an event at the end, that will finish with a medal and a sense of accomplishment, and a new goal. My forever goal will be to keep us healthy, and to keep the Cowden’s Syndrome at bay.  The only path to this end is hypervigilance.  And even then, just like in life, there are no guarantees.

We remain forever  Beatingcowdens!