Show Up

It was three MRIs in two days that week in November.  That’s too many, in case you were wondering.

One was an extension of an August MRI, which had been a knee follow up.  If you’ve been following – you know that long story.  If you’re new, the AVM (Arteriovenous Malformation) she was likely born with in her right knee, has cost her 8 trips to the OR so far.  It requires frequent attention.

By frequent I mean we see the orthopedist more often than we see most family.  And this time the whole muscle band up her thigh had been acting odd.  So we reached out to the orthopedist who asked for an MRI of the right thigh before we saw him at 1 PM that Tuesday.

By “odd” I actually mean really painful.  Pretty much all the time.  Painful enough that walking long distances or kicking swim practice got hard to maintain.  But there is so much that hurts it’s hard to sort out where something stops and other things start.  The hip had been “out” more than in, and even the chiropractor could not sort out why.  The knee pain was persistent enough to leave her wondering if something was wrong again.  The shooting pain, tingling and occasional numbness left her wondering if a nerve was somehow damaged.

Turns out, in typical form, she was right pretty much all around.  This kid has an uncanny awareness of her body.

The doctor’s student came in first not far past 1PM.  The MRI results were up, and he mentioned the AVM.  We said, “In her knee?”  When he said no, and mentioned one higher up in her leg, I pulled the plug on his practicing and sent for her actual doctor.  Turns out the thigh MRI showed a vascular malformation in the back of her right thigh.  It was somewhere in between the muscle and the bone, and adjacent to the sciatic nerve. When the images changed you could actually see the proximity to the nerve.

Hip issues – check

Knee pain- check

Shooting (nerve) pain-check

So he asked for an MRI with contrast of the pelvis.  “Sooner rather than later.”

But then he had to address the issue that had been of greatest concern walking in the door.

The right shoulder had been presenting an escalating problem all during the fall swim season.  She is a powerhouse my kid.  She pushes through because she knows nothing else. The awareness that the Hypermobile Ehlers Danlos diagnosis added on in July could at least explain the frequent partial dislocations was little comfort to the body that was living with them.  A thorough examination of a shoulder with extremely limited range of motion left us with orders for an MRI arthogram of the right shoulder.  It was time to rule out a rotator cuff tear.  We left with both MRI orders, and scripts for muscle relaxant and pain meds.  We were told to try to get it done by Thursday.  Yep 48 hours.

Thankfully Meghan’s insurance, which is the same as my husbands, (insurance coverage and coordination of benefits could take another post, so just trust me) does not require prior authorization for MRI testing.

So I got on the phone with scheduling and secured an appointment at the same facility we had been at at 11 AM for 3:30 PM.  That ended up being the pelvic MRI with contrast, something we avoid until we are confident something is there.  IV in place, back in the tube for another 45 minutes.

We were able to schedule the arthogram for 8AM the next morning in Brooklyn. But, not before learning that an arthogram was a pretty awful test.  As I had tried to barter for a time that would not take her out of school three days in a row, I was told that the doctor had to be on site.  I was asking for a quick schedule and I had to take what was available.  I was wondering why a doctor had to be on site, but my girl found the answers first.

And as we contemplated the test we sat in two hours of traffic to make the 32 mile trip home.

The next morning we were met by a well meaning tech in a Brooklyn office who thought my girl was going to have the catheter placed without me. You can say all the rational things you want about her being almost an adult. But PTSD is very real.  No matter how smart and articulate she is.  It is flat out real.  And that was about as huge a trigger as there is.  So I got a vest, signed consent for whatever I was about to be exposed to and held her hand while she screamed in pain.  The catheter was placed.  The contrast was injected, and we were back to another 45 minuted in the tube.

The appointment at 1 the next day was overwhelming to say the least.  The pain, the anxiety and the exhaustion were palpable.  The news that there was no rotator cuff tear was met with simultaneous relief and exasperation.  And if you don’t quite understand that it is probably because you have not lived with daily pain so intense you would give just about anything to hear that it was fixable.

Our orthopedist is nothing short of amazing, and he was able to explain to her that it was likely that repetitive partial subluxations caused muscle spasms that left the shoulder sitting just out of place enough that it was incredibly painful.  And because the muscles were in almost a constant spasm she couldn’t get it back “in.”  He explained the strength of her back and how some muscles are overpowering others.  He broke down the directions for PT.  He pulled her from the water for 7 days.  He started a muscle relaxant 3 times a day.

Then, he had to explain to her that we should head back to Lennox Hill Hospital to see the interventional radiologist who dealt with her prior AVM.  It had been three years since we had seen him, in hopes we were done for good.  The placement of this “small” AVM (and think relative here, does a splinter hurt?  Yep.  So a grape hanging out somewhere in between the bone, muscle and nerve probably would too.) was difficult from an ortho standpoint.  He felt that embolization, closing off the blood supply to the malformation, would give a quicker recovery than trying to dig it out.

We had an appointment on December 2nd at Lennox Hill.  Just enough time to let the muscle relaxants start to kick in, PT to begin, and the shoulder to start moving slowly and painfully.

The doctor looked at the scans, did his own ultrasound and told us to schedule the procedure.  We left with a date of Tuesday, December 17th for an outpatient procedure.

The date was carefully chosen by my girl.  The 17th meant she’d miss only 4 days of school, and for a junior with a rigorous schedule and a 4.0 that mattered.

Also, the 17th meant she could go to Lancaster, PA the weekend prior to compete in a qualifying swim meet she had worked for years to make.  She had been looking at this meet since she began swimming years prior.  When she made her first, second, and third cuts over the months leading up to it, she was ecstatic.  Now, she was facing this meet with a different set of eyes.  The training interruptions caused by her shoulder meant she was unlikely to attain any best times.  However her gentle giant of a coach reassured her she should go for the experience.

And it certainly was an experience!   We left for home Sunday the 15th with the coach’s approval of three good swims.  She knew it was the last time she’d be in the water for a bit.

We left home Tuesday the 17th for at 8 for a 10 AM arrival.  This was surgery 19.  We knew the routine.  She had had nothing to eat or drink since 9 the night before.  The wait was long.  It was after 2 when we were waiting to leave her in the OR.  And as we were leaving the team made a last minute change that they would do the procedure on her stomach.  That meant a more aggressive anesthesia and an overnight stay which we were not prepared for.

We were placed in luxury accommodations, better than most hotels I’ve stayed in, because pediatrics was overbooked.  We ended up in the executive suite.  With nothing we needed.  Felix headed home on the bus to gather supplies.  He then drove back to the city and met me at the door to the hospital before heading home for the night.

I was glad we stayed.  The pain needed hospital level management.  The pain medication allowed for some brief silly time.  She was discharged around noon the next day.

As I went to gather the car from the lot I was prepared for the hefty overnight fee, but not for the giant scrapes along my right rear panel. Clearly my car had been hit, hard.  The bumper clip was broken.  I had just enough time to file a claim with the garage before she let me know the transporter had her in the main lobby.

I settled her into the car in terror because she could not get a seatbelt on.  I prayed so hard during that white knuckle drive down the FDR and through the tunnel.  We arrived safely home 45 minutes later where a neighbor saw us struggling and helped her up the stairs into the house.

As I write, it is the afternoon of 12/22.  If you’ve read this far you know it’s been a long month.  But the longest days came after we arrived home.

This kid is busy.  All the time.  She is at school.  She is at swim.  She is at lessons.  She is at the doctor.  She is at PT.  She is NOT used to being home.

Because I think most of us can relate that when you are still there is time to think.  And thinking is hard.  When you are still there is time to feel.  And often feeling is hard.

My girl is used to being just on the outside in most social situations.   I do not know why.  I can theorize for days, but it doesn’t matter really.  It just is.  So when you are on the edge, you get your interactions with people when you are there. When you are not there you get the often difficult to process feeling that you are not missed or your absence isn’t noteworthy.

There were some cards, and some well intentioned messages from well meaning family and friends.  They lit up her whole being.

If I’ve learned anything from watching her recover and rehab time and time again, it’s this.  When you’re not sure what to do, show up.

I don’t mean in person necessarily.  Although those visits can bring brief humor and relaxation.  The irony of this technologically connected world is that we are more distant than ever, when it is so easy to show up.

When in doubt, send a text.  There is no need for gifts or grand gestures.  Offer a face time call.  Let someone know you care, especially in the first 4 days when then pain is often the worst.  It’s ok to reach out because these phones are all on mute.  And you won’t bother someone sleeping, you will only make them smile when they wake.

Whether it’s one surgery or 31, the chronically ill patient appreciates it.

There are so many super-convenient ways to show up.

So many that we are practicing showing up more for others.  Because the world is round.  And you may not ever repay the kindness sent to you, but showing up for someone else can change everything.

#beatingcowdens and#hEDS

Superfluous Tissue

6 years ago I was trembling with fear.  I sat up most of the night.  I paced the floors.  I was scared out of my mind.

No stranger to surgery, this one was way different.

Sometimes I actually forget things.  But, most of the time, especially when it has to do with numbers or dates, I remember.

Six years ago I was only months past the diagnoses of Cowden’s Syndrome Meghan and I had received.  Six years ago I was only learning about the mutated gene with astronomical cancer risks that I had passed unknowingly to my girl.  Six years ago I was reeling with the knowledge that she had nodules on her thyroid, pronounced and alarming.  I was trying to grasp the reality that this life of medical drama that I had hoped would subside, was going to require our vigilance and attention forever.

So, exactly 6 years ago tonight  I was contemplating the overwhelming reality that my newfound breast cancer risk, which exceeded 85% on gene mutation alone, had been coupled with my 8 prior breast biopsies, and my mother’s “survivor” status, and had relegated my surgeon to tell me it was not “if,” but “when” breast cancer would strike me.  When I met her for the first time a few weeks prior she had my chart with her.  She had reviewed it before our consultation, and she cut right to the chase.

“When are we going to schedule your surgery?”

I paused, a little stunned and confused.

“For what?”  I managed to ask.

“Prophylactic bilateral mastectomy.”  She stated simply.  “You will face breast cancer.  The numbers, and your history make it irrefutable.  I think we need to get there first.”

I always travel to my doctors alone, but that is probably one of the few times I actually regretted it.  The room started to spin a bit.  Thankfully, she didn’t skip a beat.

I managed to ask, “when?”

She said, “March 5th.”

I protested.  I asked if we could do it over the summer.  “I am a school teacher,” I told her.

She was kind, but unimpressed.  “March 5th.  My scheduler will help you coordinate with the plastic surgeon.  We will be in the operating room together.”

I was numb.  I called my husband, then my mother.

I drove home, and started to prepare.

I was unsure how I would handle the minimum 5 week recovery.  There were no sick days left for me to pull from.  I had an 8-year-old who had already had multiple surgeries, and I had quite a few myself.  I started to wonder how to plan financially for a leave that would end up being at least partially unpaid.

A dear friend, who will never fully grasp the depth of the gift she gave, donated 25 sick days to me.  The weight she lifted off me was astronomical.

I spent the next few weeks in auto pilot.  We were still handling some new findings on Meghan, and I was reading and processing Cowden Syndrome.  It made me nauseous.

I remember the drive into the city that morning.   I remember walking with Felix.  I remember praying over the phone with my brother-in-law.

I remember repeating over and over to the unbelieving doctors that I would NOT be having tissue expanders, the common course of action with a mastectomy.  The plastic surgeon heard my concerns, and my need to simplify, and to get home without additional surgery.  The knowledge that my child would likely one day walk this road filled me with a sense of urgency to make it seem as simple as possible.  She agreed to do immediate implants.  I lost count of the number of times I explained that.

I remember walking to the operating room, and looking into the comforting eyes of my surgeon before I fell asleep.  “You are very brave.”  And even though she never really gave me a choice, her reassuring smile helped so much.

I remember waking up feeling relieved and empowered.  Not just because the surgery was over, but also because I had gotten out in front.

I remember seeing my husband, and checking on Meg.  I remember seeing my sister and telling her she should be with my nephew.  His birthday happens to be the same day.

I was discharged the next morning – about 28 hours after the surgery.

The next days were painful, and draining.  My mom was with me for a few, to wash my hair, and to chat.  I hated the circumstances but treasured the time with her.

After my mom’s mastectomy following her cancer diagnosis many years prior, she had dubbed the breasts “superfluous tissue.”  I finally understood.

When my pathology came back days later with early grade DCIS, essentially one cm of stage 1 breast cancer, I missed my breasts even less.  We were all surprised, and I was grateful for the knowledge that the cancer was not close to the chest wall and no follow-up treatment would be needed.  I just had to heal.

I had no idea at the time that two months later I’d be back in the hospital for a hysterectomy.  Cowden’s Syndrome does not mess around.

Except, it messed with the wrong family.

We get knocked down, but we get up stronger.

Sometimes I hate that I remember dates.  Other times, maybe it gives me reason to celebrate, and to feel empowered.

I started owning my nutrition 6 years ago.  I have worked on playing strong and fit.  My weight has been stable, and I am proud to be one of the healthiest looking sick people you’ll ever meet.

“superfluous tissue” indeed.

#beatingcowdens

 

 

Time flies…


February Break.  A time to refresh and renew.  Mostly.

Except here.  Here it’s a time to go as hard and fast as possible to get as many things done as possible.

Some of those things are Cowden’s related.  Some are real-life related.  Some are both.

Each could probably take a full entry or more.

But, for now, just in the last 10 days…

Last Thursday, was root canal 4 of 4.  Ninety minutes in the chair for a nerve I don’t think is gone.

Friday I spent the morning at pre admission surgical testing for an upcoming vascular surgery.  6AM appointment.  By the time I was leaving at 8, they had already begun to tell me I needed to find a primary care doctor to fill out “clearance papers.”  A whole lot of nonsense about “comorbidities” with Cowden Syndrome.  I felt like I had “cooties.”

Friday afternoon I went to two appointments with Meghan.  Each left more questions.

While I was in the car the head of PAST (Pre Admission Testing) called to tell me without additional clearance, my surgery was cancelled.

Monday the dogs, both of them had all day trips to the vet.  One had her teeth cleaned, and the other 22 staples in her side to remove a tumor that’s been there for almost 18 months.

Tuesday some work began in our basement- a long overdue upgrade to a leaking shower.  It would take days, and my husband needed to stick around just in case.

Tuesday we went back to NYC to Meghan’s neurologist to have another brain MRI.  Lesion is stable.  The tumor board will review it on 2/28 – Rare Disease Day – and if all concur, she will have 6 month brain MRIs for at least 3 years.  We talked a lot about headaches, and got a suggestion for a natural migraine relief I’m hopeful about.   The head congestion persists despite “clear” sinuses and the headaches are relentless.

After I dropped her to swim, right from the city on Tuesday, I called my surgeon’s office to discuss what had gone wrong to cause the cancellation of my surgery.  I was very surprised to hear things had rectified, in ways that confused me greatly, and I was no longer cancelled.

Having given up my ride, and anxious about the way things had been handled, I took an uneasy Uber trip to the hospital for my arrival time.

I should have been late.  They were.

My 11:30 OR became 3:45, and the day was pretty much poorly done all around.

It’s over now – and truly is a long enough story if I tell it, it will need its own entry.

Thursday and Friday I did what I could to rest.  Saturday was Silver Swimming Championships.  In the Bronx.  With a 6:30 AM arrival.

There was also a 2 hour line for a well-deserved sweatshirt.  In my stockings.  3 days after vascular surgery.

We made it back to Staten Island in exactly enough time for her to change her clothes, brush her hair, and grab a sandwich on the way to theater.  She’s begun working with a lovely group, SICTA, performing “Once Upon a Mattress” this spring.  She made it in 10 minutes before rehearsal began and kept at it till I picked her up at 4:30.

Sunday was Saturday – take two.  Minus the sweatshirt line, with the addition of some rain.  In the dark.  To the Bronx.

But, two days.  Two events.  Two best times.  This is what makes it worth it.

And, I was home in time to get April to the vet for her newest ear infection.  Felix was going to go, but the flex hose behind the dryer split…

And in 12 hours I’ll be on my second class of the day.

It should be easier than this.  Today I’m wiped out.

I keep vowing to write more, and I keep failing.

#beatingcowdens

is exhausting.

It’s Complicated…

I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang.  I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I acknowledged the call clearly coming from the medical office we had visited earlier that day.

It was Tuesday the 11th.  “Spring Break” had begun Saturday the 8th.  Early that Saturday morning I had left on a road trip alone to the Marine Corps Base in Quantico where I had the privilege of watching a Marine who served with my Dad receive the Bronze Star with Valor – almost 50 years after the day it was earned.  It was a whirlwind trip – 5 hours down that morning, and a busy, fun, emotional day that lasted well past midnight.  I returned to Staten Island by 12:30 PM Sunday, in time to catch Meghan’s 1 PM Swim meet.  Felix took “off” the workweek and spent Monday and Tuesday overseeing the installation of air conditioning in our house.  It was 24 hours well spent – 12 each day- but the inevitable trail of dust and dirt needed to be tended to as well.  So, I had headed to this appointment alone with Meghan earlier in the day.  Now I was trying to visit with Grandma, although she’s often unsure I was ever there… I still know.

I took a deep breath before I answered.

A lovely young woman, whose cheery voice caused me to immediately forget her name asked, “Is this Meghan’s mother?”  That is my favorite title- depending on whose asking.  I tried my best to muster and equally cheery, “Yes, it is.”

“Oh, good.  I was asked to set up Meghan’s surgical date.”

Sigh,  Even though I knew the call was coming – it doesn’t get easier.  I also knew I had very specific directions from Meghan that I was to “get it done as fast as possible.”

“How soon can we do this?”  I asked.

“My first available is May 11th.”

“REALLY?  A whole month?”  I thought of the anticipation and the anxiety that would build as the pain increased.  Then I realized something worse.  May 11th is opening night for “Bye Bye Birdie,” her school play.  Cast as Rosie she’s been preparing forever.  There was just no way.  I swallowed hard.

“What if I can’t take that date?”  I held my breath,

Cheery changed her tune.  I’m sure she thought I was being difficult.  I tried to explain.  No luck.

“The next date is May 20th, then you’re into June.”

I was playing out the June calendar in my brain.  ComicCon with Dad, school dance, graduation, West Virginia… forget about the Long Course Swim Season and the 2 meets we knew she’d have to scratch out of, and the last CYO Swim meet she’d ever be eligible for- that was out too.

There was never going to be a good time to be out of commission.

Deep breath.  “Any chance you’ll have cancellations?”

“No.”

“Ok then.  May 20th it is.”

And after telling me I’d need to give up a day the week before for formal pre-surgical testing, which is a first for us, as she grows up, I didn’t bother to explain I’d just missed 16 days of work for vocal cord surgery.  I just said, “Thank you.”

Meghan’s relationship with her right knee is complicated.  It started giving her trouble before she could talk, as her first babysitter will attest to hours rubbing that knee.  As she grew, it got worse.  It always seemed to bother her.  She pushed, and pushed.  Eventually it was hot to the touch and pulsating.  The diagnosis came in 2008, after multiple mis-diagnoses, including “her pants are too tight.”  Finally, a team at Sloan Kettering, adept at ruling out cancer, was able to diagnose a high flow arteriovenous malformation (AVM) in that knee.  We were sent off to Interventional Radiology at Lenox Hill, where the doctor confidently told us he could eliminate this AVM in “one procedure – 2 tops.”  Between December of 2009 and February of 2012 there were 4 embolizations on that knee.

The doctor seemed almost relieved when she was diagnosed with Cowden’s Syndrome in the fall of 2011.  It seemed as if he felt better about himself, like there was another explanation to justify why the darn thing just wouldn’t quit.  By that point she was being run through the surgical mill, so we welcomed the 2 and a half years of monitoring.  It seemed to stabilize.

But, as everything overlaps and one thing leads to another, there was pain.  There was pain that she was repeatedly told should not be there.  Yet, no matter what they said, the pain was there, and it was consistent, and it was real.  She pressed through.  She stopped soccer and tried dance.  The knee was cut out for neither.  She found her way into the pool in the spring of 2013.

By that fall we had signed her up for a 12 month competitive swim team, and things were looking up.  She swam a full year, getting stronger, becoming more confident, and finally feeling like an athlete.

There were other surgeries in between.  And there was that knee pain.She had been prescribed Celebrex to substitute for the Advil that was being consumed in clearly excessive quantity to allow her to function.  And the Celebrex was wonderful.  Until it wasn’t.

And in May of 2014, two months after a complete thyroidectomy (thank you Cowden’s) she lay in the hospital in severe GI distress.  It took a week to stabilize her.  I was scared.  Out went the Celebrex, fried food, and a whole host of other goodies.

But, little did I realize, that Celebrex was likely the reason the AVM had quieted down.  Apparently the drug has properties that work on blood flow.  A few months off of the Celebrex and all hell broke loose.  Literally.  It was November of 2014, the Tuesday night before Thanksgiving when she collapsed outside of swim practice, unable to walk.  Our travels that night took us directly to Lenox Hill ER because we were sure it was the AVM in action again.

Proven right when the surgeon showed up early the next morning giving me a surgical time for her, they drained 50ccs of blood from the knee that day.

Blood and bone and tissue are not friendly.  It’s like neighbors invading space.  You can tolerate it for a while, but it doesn’t take long before the damage is irreparable.  It became evident there was structural damage beginning because the blood had begun to wear things away and allow the knee cap to move to places it did not belong.

We were advised to consult with an orthopedist, and we did.  He wanted a coordinated arthroscopy where both he and the interventional radiologist would be in the OR together.  It became an orthopedic procedure.  The patella was moved back where it belonged.  Things were cleaned out.  Recovery was smooth relative to the emobolizations.  We were told it would last a few years.

In January 2017 we were pretty much released from interventional radiology.  We were told the AVM seemed quiet and we need only bring her back if she becomes symptomatic again.  In February the knee pain started again.  Slow, but steady, it kept growing in duration and consistency.  At a routine visit the orthopedist mentioned the potential need for another arthroscopy.  He reviewed the January MRI and showed us where the patella had shifted again.  He said her growth plates were “wide open” (a scary thought at over 5’7″) and that this would continue to be an issue at least until she finishes growing.  He offered her a “patella stabilizing brace” for 6 weeks, to see if it would do the job he wanted done.

Tuesday the 11th he looked at her knee for less than 2 minutes before he started making plans for the surgery.  He explained to us what he needed to cut and move, and why it was time to get it done.  We had the necessary conversations about length of time out of the pool, and other restrictions.  We left, quiet and resolved.  The only thing she asked me was to just get it done as soon as possible.

So when the phone rang in the hall last Tuesday afternoon, I felt sucker-punched, again.  Regardless of how many times I tell myself, and her, that it “could be worse” and we have to “look at the bright side,” the reality is that sometimes it sucks.  And that’s just the frank honest truth.  Scheduling your 7th knee surgery in 13.5 years is just not ok, not even a bit.  I was grateful for Grandma, and the ability to be distracted for a bit.  Without her memory, she is just real.  That was a good day.  And that day she loved having me.  I cherished the visit.

I spent Wednesday in the grocery shopping marathon, and Wednesday night at swim.

Thursday was for an extensive blood draw for Meghan and a triple dermatologist appointment.  Meghan headed to play practice, and I traveled to my vocal follow up in NYC.

My report was adequate, but not what I had hoped for.  Still swelling.  Still be very careful.  Still rest when you can.  Still exercise caution when you get back into your program on the 19th.

Friday was for vocal therapy.  And for trying to put the house back together.  And for painting upstairs, and washing the dist off the curtains, and visiting my in-laws.  It was our 17th Anniversary.  We sneaked an hour or two for dinner together…

Saturday was voice lessons, and…

Somehow it bled into Sunday, and Easter and some time with family.  But, it was immediately back to the painting.

By Monday I was waiting for the blood results, hoping to catch a call from one of the three doctors on the order.  We hit the orthodontist to have the retainer tightened, and a few things at Costco before it was time for swim…

I am focusing on the sunny days.  I am trying to find some time within the chaos to be still.

I asked Meghan why she was so uptight the other day.  It really was a stupid question.  This was the grossly abbreviated version of ONE aspect of her real life.

And tomorrow she will have to practice smiling and responding to the question “How was your break?”  in the only socially acceptable way.  “It was fine, how about you?”

Fine… it has so many meanings.  We don’t want to bring people down all the time.  It gets hard to have a conversation sometimes though.  Felix and I realized in the years since we’re married, one of us has been in an operating room somewhere in the neighborhood of 34 times.  A lot of our days are spent recovering.  Physically, mentally and emotionally recovering.  Fighting financially against incorrect billing, and generally trying to breathe.

I’ve said it before and I’ll say it again, we would not trade our lives for anyone’s.  However, just like in anyone’s life, some days are better than others.

I’m anxious for a vacation not peppered with appointments and surgeries.

Until then, maybe I should teach Meghan to answer “How was your vacation?” with “It’s complicated…”

#beatingcowdens

Deep Cleanse

I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3.  I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation.  But, aside from the inconvenience of not speaking, I have felt pretty well.

That left me with a little time to get a few things done.

I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.

I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years.  I vowed to get to work on that.

I also discovered that I have an account on the family’s “Netflix”  and I learned how to sit still long enough to binge watch some “Law and Order.”

There was time over these three weeks for some honest self-reflection as well.

Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it.  I already wrote about isolation,  and I had some time to think more deeply about what role my own actions play in that.  I was able to reconcile that some of it is unavoidable, and some can be mended by me.  Balance.  I’m on it.

I also took a hard look at my own emotions and how they affect my house.

It is so easy to get “stuck” in the role of caregiver.  It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life.  We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin.  Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt.  When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming.  And it did.

I sat in my office one day, looked around and realized I was unhappy.  That was a tough realization.

I am not unhappy with my husband, or my daughter, or the countless blessings in our life.  I just became so consumed with getting things done that I forgot myself.  Literally.

Sometimes its good to reflect.  It’s the only way to get things done.

Last week my sister sent me a box of essential oils.  I was skeptical.  I bought a diffuser.  I feel like peppermint in the air while I work is good for my soul.  So is trying something new.

Tuesday I went to Kohl’s. A quiet activity easily done alone.  I felt the tension start to release.  I picked up a few things for me and for the house.  I went out because I WANTED to.

Something amazing happened Tuesday.  My husband and my daughter both remarked that I looked happy.  I had a story to relay at dinner that was about me.  The mood in the house was lighter.

Wednesday I took a nap in the middle of the day.  Because I could.  Again, I found myself with a little less pressure in my shoulders.

That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.

I’m a work in progress.

I chose to do a deep cleanse on Thursday and Friday.  I was working on my mind, but I had to bring my body along.  It had been too long.  I had gotten a little lazy in my habits and in my routines.  I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.

I woke up this morning having released 5.1 pounds of junk.  I started the day with a protein shake full of strawberries.  I shopped with my girl this morning.  Then, I got to listen to her singing lesson.  Now, they watch a movie while I get to write.  Then, my little family is off to dinner together.

This week the spring plants that sprouted on 3/3 started to really grow.

The caterpillars that came in on 3/2 have all become butterflies today.

Maybe we all used the same period to try to transform a little.  Nothing like a few new butterflies to remind you about new beginnings.

I am focused on this journey now.  I may falter along the way, but I will hold true.  This feels right.  This feels good.  And when I feel right and good, it is much easier to remain

#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.

 

 

Richmond County Savings Foundation

If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.

This story Inspirational Staten Islander to host Fund Raiser ran on February 4th.  On February 8th I was contacted by the Richmond County Savings Foundation.  The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.

We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application.  The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away.   And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!

We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check.  We got to meet Mr. Cesar Claro, who noticed Meghan’s story.  We got to meet Ms. DeSapio who helped us so much via phone and Email.

Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway.  It was just right for her to be there.

We gathered in a conference room with about 10 incredibly inspirational people.  I loved how professional, yet casual the whole experience was.  Amounts of grants were not discussed.  Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.

Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder.  She did great, as usual.

We got to hear from a teacher, and his school’s work with Habitat for Humanity.  We heard from “Metropolitan Fire” and how the grant would help their organization.

We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.

We heard about the Moravian Church garden and their donations of food.

We met E. Randolph Wheagar from 2nd Chance Youth Empowerment Program, and we were inspired by their community work as well.

We met Jennifer Dudley from Staten Island Children’s Museum and learned about their efforts to “spruce up” the museum.

We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained.  In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience.  It was an intense 45 minutes!

Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy.  If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy  It is a genetic disorder affecting about 1 in 3,500 boys.  The body lack dystrophin, and without it muscle cells become damaged and weaken.  It is progressive.  Michael is 11.  They have 2 other healthy children.  They are a family like ours.  Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.

In the 30 minutes we sat across a table I felt inspired, and connected.  I respect so much the positive outlook, and the awareness that even in strife, others have it worse.  I respected the acknowledgement that every day is a gift, and life can change your perspective quickly.  These are things we identify with in this house.  Those are principles we live by.

Meghan and I often feel a little more “at home” in the presence of others with rare disease.  While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap.  And what also overlaps are your decisions in how to handle them.

I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.”  And, “I feel like I was put here to DO something.”  Watch this clip and reminisce with me.

Today we were full of gratitude.  Today we were inspired by others.  Today we were reminded of our own mission.  Today was a continuation of an ongoing goal,  and a reminder that it matters.  It all matters.

We remain

#beatingcowdens

The Struggle (for Silence) is Real!

Irony is spending 20 years wondering why your students sometimes struggle to be quiet, and suddenly, in one week, realizing how insanely difficult it is to be silent, AND, that it’s likely your need to talk constantly is part of the reason WHY you went into teaching in the first place!

Last Friday, March 3rd, this ugly thing was taken off my vocal cords.

Before – 3/3/17

And they, like so many other parts of my body, now boast scars.

After 3/3/17

So, I set up for a few weeks out of work, and a week of required silence.  I never actually thought I was ready, which is a good thing.   Because I wasn’t.

I do poorly on twitter,  Rarely could I get out what I need in 140 characters or less.  Absolute silence involved my cell phone in hand at all times.  A few times the thing almost learned to fly, as the fingers, and auto-correct could not keep up with my brain.  But, life lesson number, oh, I don’t know, 4 or 5, teaches us that life goes on around us.  Ready or not.  Even when you have to watch and not participate.

There have been many times since March 3rd I’ve been grateful that thought bubbles do not appear above my head.

On the 9th I headed to the city for my follow-up.  After learning the pathology was benign, and read only “polyp,” I was relieved.  The doctor was pleased with the initial healing and told me I could begin to use my voice.  Slowly.  He said 5 minutes an hour.  That sounded high, based on what the voice therapist had told me in the fall, but I was grateful.  I used the first 5 minutes up asking him questions.

I wanted to know whether this was connected to Cowden’s Syndrome.  I wanted to know if it was likely to recur, if I needed vocal therapy, and when my follow-up would be.

Apparently, kind as he is, he could communicate on Twitter much more efficiently than I.

Cowden’s Syndrome?  I don’t know.  There’s not a lot of literature.  This type of polyp is usually a traumatic event, something you’d remember.  But, you don’t.  And it grew really fast.  I’m not sure.

Recurrence? Maybe.  Depends how it came to be.  Be careful with your voice.

Vocal Therapy?  Suggested.  Start on the 13th.  (Whew… THAT I now KNEW I needed.)

Follow up – April 13th, a few days before I am scheduled to teach my first class post-operatively.

He was an outstanding surgeon.  Matter-of-fact.  Thorough.  Efficient.  But, I’ve known enough surgeons now to know, they don’t play with why.  They just fix it and move on.  He will “doctor” me, to the point that he will follow-up, and hopefully watch NOTHING ever grow there again.  But, in reality this is now just another vulnerable spot on this PTEN mutated body.  Because, I would stake certainty that it’s connected.  There just aren’t that many coincidences in life.

So I left Thursday feeling good.  I got 5 minutes an hour!  I tried out my voice in the car.  I tried it out at home.  And then, I picked up my daughter at school, and I was so excited to talk to her, I easily let the conversation surpass 15 minutes.  oops.

Later when I spoke to my husband I was well past 10 before I stopped.

This 5 minutes and hour thing was not for the faint of heart!

Sometime Friday I decided that stopping at 5 minutes was, nearly impossible for me to regulate.  It was quite possible I could lose my mind.

And then I texted the voice therapist to set up my appointments for this week.  And I mentioned the 5 minutes.  And that I randomly out of nowhere had vomited for 20 minutes that morning.  And her words were crystal clear. “DO NOT SPEAK AGAIN UNTIL I SEE YOU”

Sucker Punch

I went from a poorly managed 5 minutes back to a feeble attempt at silence.

I failed.

I spent 2 full days at a swim meet at with my girl.  7 hours each day away from home.  I got to rest my voice, except when I felt compelled to tell her how proud I was.  Or to wish her luck.  Or to just chat… a little.

Some people really love chocolate.  Me, I don’t mind chocolate, but I LOVE to talk.

We sat in therapy today and I got exercises for volume and pitch… all ironic because I struggle to tell the difference, but I’m an overachiever, so I try to do well.  I sound like a complete loser, but I imagine it’s the same as me attempting something that requires coordination, like kick-boxing, or yoga. My poor vocal cords may not stand a chance.

6 exercises, 5 times each.  Repeat 4x a day.  And during those 4 hours DON’T SPEAK at all.

The revised schedule she gave me had 3 minutes an hour till Friday.  Then, we’ll entertain 5 minutes again.

Tonight I pulled back into my office.  To be silent I must be alone.  I put some “breathe” into my diffuser, and tried to get my thoughts together.

Then I realized they ARE together.  I just have no place to put them.

Tomorrow the house will be full for the snow day.  Normally this would make me very happy.  Tomorrow it is likely to make me a hermit.

Grateful the voice works.  Grateful I tend to heal well….  But, some days

#beatingcowdens

is a real trip!

5 Years and “Sag-less” in my 40s

5-years

March 5th. 2012

One of those dates that will stick with me forever.

On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU.  I signed all the papers with my husband by my side.  I shook.  I prayed.  I was terrified.  But, I had strong resolve, and there was no turning back.

Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.  This mutation is responsible for increased tumor growth, both benign and malignant.  It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things.  After our diagnoses, we began aggressive and age-appropriate screening.

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Meghan was 8.  I was 38.

They started with her thyroid.  And immediately found issues.

At exactly the same time I was being sent through screening for the highest risk in my age group.  Breast cancer.

I already had a mom- a 15 year survivor of bilateral beast cancer.  (She does not have the PTEN mutation.)  I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology.  But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012.  She introduced herself to me, having already torn through my previously received medical record, and said we should set a date.  When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”

A little stunned, I caught my breath and asked why?  “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively.  “We need to get at it first.”

She sent me to her scheduler, who coordinated with the plastic surgeon.  The date they came up with was March 5th.  I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.

I called my husband, shaking.  “Do what they say,” he calmly asserted.

So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.

The MRI was negative.  I am still amazed by that.  Five weeks prior to the surgery there was NO FINDING on the MRI.

I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders.  She reminded me that the results would be “imperfect.”  I knew I could not delay my recovery by months.  I had a daughter, a family, and a job to return to.

storm

The surgery was uneventful.

I vomited repeatedly as I left the house that morning.  I cried as I walked into the OR.  My surgeon called me “brave.”  I woke up with a strange feeling of empowerment.

I left the hospital 28 hours later.  There were drains and wrappings, but there were things to do.  I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.

The day we went to have the drains removed, for whatever reason both Meghan and Felix were there.  The plastic surgeon was the first to mention how lucky we were we caught “it” early.  I was confused.  She said, “The cancer.  It was very early and far away from your chest wall.”

There was silence in the room as we all processed the word “cancer.”

cancer-changes-us

She realized then she was the first to share the news.  Our next stop was the surgeon.  I pored over the pathology report and kept getting stuck.

I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.

I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”

I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay.  I have not traveled the road as they did.  I will forever admire them.  But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us.  That is a feeling, and knowledge that can not be explained.  You either know it, or you don’t.

every-wound

My implants lasted less than 5 years.  The life expectancy is 15.  This past summer they were replaced.  Scarring was severe on the right side, and the scars needed to be broken up.  A new pair replaced the old.  Nothing flashy.  Quick surgery, quick recovery.  No big deal.  Just a reminder of the reality that will follow me forever.

 

Today I celebrate that reality.

5 years officially Cancer-free.

Five years – and by the grace of God, countless more to go.

Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.

I celebrate my Mom – 20 years a survivor this year – my role model.  My motivation.

I celebrate inside my own quiet- unable to speak as my voice heals.  I celebrate even through miles of survivors guilt.  I celebrate despite my broken heart as so many around me are taken by cancer.  I celebrate because that is what they would want most.

Once you’ve been there.  Lived it.  Watched it.  Seen it.  You get a deeper sense of how precious life is.  And you celebrate what you have each day. It’s not easy.  Life can be messy.  But, we do our best.

I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.

Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!

#beatingcowdens

cancer-free-zone

 

 

Silence is… difficult and required

I always hated charades.  I stunk at it.  And I still do.

charades

I would have made a rotten mime.

mime

Forced down time.

That’s what surgery brings.

This time it brings silence as well- for at least the next 5 days.

Emoticon posing like “three monkeys”

I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me.  I mean, ignore it in the sense of not writing about it too often.  Of course, I’m not foolish enough to ignore it…

It was last spring, right about this time that I started to feel a little hoarse.  I blamed it on spring allergies.  Except it never went away.

It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.

Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.

I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway.  So – I find its best to pick a good surgical record to start.  Negative, or realistic?  You can decide for yourself.

The first appointment I met the speech pathologist and the doctor.  Both took baseline screens.  I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side.  I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.

Healthy image
Healthy image

But, first I was sent to vocal therapy.  And while I scoffed at the idea, I know now how valuable the experience was.  I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech.  But somehow for me, it was a tougher pill to swallow.   At first.

I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016  And then there was a quick entry here Laugh Out Loud – November 2016,  Basically, the therapy helped enough to reduce the swelling, and reveal more issues.  In October I was told definitively that surgery was in the future plan.  I was told to continue to practice what I had learned in vocal therapy.   I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises.  I continued Vocal Therapy through December.  It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time.  Not too bad for a few months of modifying something I’ve been doing for 42 years!

The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice.  We got in a routine, as you do when faced with a new obstacle.  There is no other choice really, because as my friend says, we just “keep swimming.”

The plan was for me to return to the doctor in early April to set up surgery for the summer.

Except plans change.  And it was getting a little hard to breathe.  I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.

I called the doctor to move the surgery up.  We set February 20th as the date.  Sometimes I just have to trust my instincts.  Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd.  And for a hot couple of moments I entertained February 17th.  Except that “Jeans for Rare Genes 3” was set for February 19th.  And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.

January 31, 2017
January 31, 2017

I headed to see the doctor on January 31st and he found a new problem.  There was now a very large polyp extending over the vocal cords.  It was big and it had not been there in October.  I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign.  I liked the odds, but still he agreed waiting till the summer wasn’t a great plan.  We settled on a surgical date of March 3rd.  Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.

Over the last few weeks I felt increasingly short of breath during mundane tasks.  I stayed calm.  I decreased my daily activity and moved a little slower.  I knew we could make it, and we did.

So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery.  I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.

The surgery went as surgery does.  It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room.  I don’t get lost anymore and anticipate their words and requests.  It’s odd, and a bit strange this job of #beatingcowdens.  I walk dutifully to the OR and get settled under my warm blankets.  I expect the IV, and the burning of the anesthesia.  I know the mask will be the last thing I remember before the recovery room.

img_9426

img_9427

And its amazingly less nerve wracking when the surgery is for you and not your child.

So the biggest polyp had increased drastically in size since January 31st.  It’s gone, and so are the other issues.  We wait on pathology and a follow-up next Thursday.  I’m on strict voice rest until Thursday at least, which requires me to really isolate.  Talking to my family is reflex.  And as I said before I stink at charades.

Before - 3/3/17
Before – 3/3/17
After 3/3/17
After 3/3/17

So we carry our phones.  I put my fitbit on rest. It’s off an in a drawer.  I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils.  I’m organizing my brain- a little.

I’m trying not to get ahead of myself.  I’m trying to address one day at a time.  This is not my strength.  It is in my long term planning that I strengthen my resolve and focus best on

#beatingcowdens.

For now it’s been about a day.  I slipped on about 20 words total.  Not great, but I never claimed to be perfect.  The funny thing about talking is you don’t realize how much you do it till you can’t.

The laughing is even harder.  My husband is funny.  It’s one of the things I love most about him.  How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh?  I’ll hide from my biggest blessings a few more days.  #gratitude