The Struggle (for Silence) is Real!

Published on March 13, 2017March 13, 2017 by beatingcowdensLeave a comment

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.

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

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!

Pathology…

Published on July 26, 2016 by beatingcowdens2 Comments

About an hour ago I got off the phone with Meghan’s gynecologist. It seems we dodged another bullet.

Mostly.

Once again we got to spend about 45 seconds in a deep breath as we were told there was no evidence of malignancy in the uterine biopsy from last Friday.

BUT…

There is always a “BUT…” I’ve come to expect it now. After she spoke, she paused.

I asked her why she sounded happy and hesitant at the same time.

“Well I just got off the phone with the pathologist…” and her voice trailed off.

So much was what she expected when she spoke to us Friday. But, it was still bothering her that there are polyps. And more than one.

“It just shouldn’t be…”

Sigh.

We’ve heard this so many times before. “It just shouldn’t be…” But, in fact it is.

So the polyps were benign. The tissue sampling was benign. This is a good thing. A very good thing.

But, this whole situation. The whole scenario that causes all sorts of conversations a 12 or 13, or even a 19 or 20 year old for that matter, should NEVER have to have, is just not ok.

There are thoughts, decisions, trade-offs, conversations, risks and benefits that make deciding on a high school seem trivial. Strange that THAT will be the toughest thing most girls her age have to do this year.

And as I look at her, it kills me inside the things she has to go through, and the thoughts she needs to think. All I can do is thank GOD, that He trusted me with this beautiful, dynamic, witty, young lady. And I promise to take good care of her until the rest of the world figures her out.

(and really, for FOREVER. as we remain #BEATINGCOWDENS together!)

The Waiting Place…

Published on July 20, 2016July 20, 2016 by beatingcowdens2 Comments

A quick Google search brings the definition below when the word “patience” is entered.

pa·tience

ˈpāSHəns/

noun

1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

I’ve been thinking a lot about patience these last few weeks. It’s something we work on from a very young age, yet I’m not quite sure it can ever be attained in its purest form. At least not by me. Not if I’m honest.

And I tend to be honest right here. Which some might think is an odd place to make that choice, but that’s for another conversation.

We work on patience when we are young. Waiting for play time. Waiting for school to end. Waiting for a party. Waiting to get there. Waiting for the game to finish. (Waiting at ‘the waiting place’ like Dr. Seuss in “Oh, the Places You’ll Go”)

We learn that patience will help us get things faster. If we are patient our parents are more likely to bend. If we do what we’re told and wait, things are more likely to go our way. That ice cream cone has a better chance of landing in our hand if we’ve exercised patience than if we’ve badgered.

When we get a little older there are less overt rewards for patience, yet it’s still a necessary virtue to master. Those without patience are deemed immature. If we are overly demanding it endears us to no one.

I know this. I know all of this. And generally I am a pretty patient person. But, I must tell you I have thought long and hard about the amount of patience required to navigate Cowden’s Syndrome and its ramifications, and it seems to be an inordinate amount.

I get it. I’ll say it a thousand times to anyone who will listen. Of all the “rare disease” cards to draw, this is by far among the better ones. I know of the suffering of so many who are diagnosed with torturous terminal diseases. I know of so many who would trade places with us in an instant.

If the PTEN mutation causing Cowden Syndrome is found early, a lifetime of vigilance can often ensure longevity.

It’s just that with that vigilance, you need to much darn patience. So with my gratitude, I sometimes battle frustration. Which is ok. Because I am human.

In the last 21 days I’ve been to Manhattan 4 times for doctor’s appointments, and another 2 to Long Island. The average roundtrip for these appointments is about 5 hours. 5 hours to travel in insane traffic regardless of the hour. To Manhattan the distance is only 13 miles and I can not tell you how many times 2 hours hasn’t been enough time to be on time.

But, I should never worry, because they are rarely, if ever on time. And while I understand the myriad of reasons doctors run late, still the patience sometimes runs thin. Especially when we are anticipating another traffic filled journey home.

The patience wanes when I call offices and 2 days lapse without returned calls. I struggle when I have to spend hours explaining what test I need insurance authorization for, only to have the person speaking to me become hysterical with laughter, presumably because they are being told a joke. I’m not against laughter. I actually like it. But, when I have to now cancel the test ordered by the doctor I never wanted to see in the first place, sometimes I just can’t find it funny.

When I call for an appointment and I’m given a 3 month wait time. And an appointment smack in the middle of the work day. I lose patience. I don’t expect special treatment. And its a good thing I don’t. But its sometimes hard to stay patient when you’re juggling over a dozen specialists (each) and a full-time job, and academic honors.

So in the summer I try to be even more patient. But by default I have to get a lot of things done in the summer. We are actively trying to shove in some fun, in between a boatload of appointments. I try to squeeze in time in pockets of my day to regroup and relax. I try not to cringe when my Facebook news feed is full of play dates and day trips. Why shouldn’t it be? I don’t WANT anyone else to have to sort through this mess.

Friday is Meghan’s second uterine biopsy. PTEN mutations tend to cause most of their cancers, although not exclusively, in the thyroid, breast and uterus. The fact that she hasn’t hit her 13th birthday yet, and this will be her 17th round of operating room, general anesthesia procedures is taxing. But, we will be patient. We will be patient tomorrow when we wait for the time of Friday’s procedure. And we will be patient on Friday as there are often delays. We know.

We will be patient over the weekend as she adjusts to the discomfort and pain from the procedure.

We will be patient while we wait. And wait. For the critical pathology report.

We will be patient while she heals enough to return to the pool. Her happy place.

Patiently we will continue to navigate the road of vigilance, peppered with mines that need to be avoided at all costs.

We will pretend, each time we meet a new doctor, that they are the most important. We will not even try to explain the full complexity of the scheduling of life. They have their own problems. They don’t need to hear about ours.

When we each face our own lives we know the challenges presented to us. I don’t want any of yours. At least I understand the task at hand here.

I have gratitude that I am given the opportunity to allow my vigilance to matter. I am patient. Mostly.

pa·tience

ˈpāSHəns/

noun

1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

Usually I take a deep breath. A bunch of times. I’ve learned patience gets you farther.

So if some days are harder than others, I ask you to have patience.

#beatingcowdens can be exhausting.

It’s Complicated…

Published on December 22, 2015December 22, 2015 by beatingcowdens2 Comments

I just ended a 30 minute conversation with Meghan’s adolescent gynecologist. The fact that she spends 30 minutes on the phone with me speaks to a rare spark of passion for her field, and a genuine desire to help. These are things we clutch because they are uncommon, and, when they come at all, they are fleeting.

The long and the short of the pathology, which arrived earlier than planned, was that there was no malignant finding. Yes, you read that right. No malignant finding. (Insert Happy Dance here…)

And the gratitude for the prayers and positive energy was lifted up. We truly are always aware of the potential alternatives, regardless of our situation.

But, as is always the case with Meghan, I encourage you to keep reading. Nothing is ever really simple. And, as the years go by it seems to get progressively more complicated.

While in fact there was no malignant finding, there was not a purely benign pathology either. She had “the best type of hyperplasia you’d want to find.”

Except when pressed, the gynecologist admitted that there is no type of hyperplasia that you’d ever want to find in a 12-year-old, and that there should be nothing but normal cells there.

Hmmm. Hyperplasia. Medicine.net says…. “Hyperplasia: An increase in the number of normal cells in a tissue or an organ. Hyperplasia can represent a precancerous condition.” And various other sites say the same. The doctor agreed. The pathology finding was not “normal,” and therefore it must be treated.

See, hyperplasia, specifically endometrial hyperplasia might be detected in women 3-4 times her age. It might even be expected in women 5 or 6 times her age. But, her age is 12. And none of this is ok.

I pushed her about thinking outside the box, and she reminded me that the entire biopsy WAS thinking outside the box. Any other teen would have been treated for months or more on hormones. That could have had epic consequences.

In the short-haul, she gets to heal from an invasive procedure. In the next week more hormones will be introduced to her body in an attempt to keep the hyperplasia at bay, and most importantly to keep it from progressing. But, hormones, although commonly used to regulate bleeding, require special care in the case of a young lady with no thyroid, a difficult time balancing the endocrine hormones, an extremely elevated risk of uterine and breast cancer, thanks to the PTEN mutation, AND TWO first degree relatives, with estrogen fed breast cancer.

For now, she keeps her uterus. And we hold our breath. We hope that over the next few months things will start to calm down. And some time in the next 6 months the invasive biopsy will be repeated over again to make sure the hyperplasia is gone or behaving itself.

To Meghan this mimics the process that took place at the beginning of the end of thyroid removal. We had about 3 years of progressive biopsies before they decided to pull the plug and take it out. She knows, and agrees, that we will all fight longer and harder for her uterus. For so many reasons. But the similarities can’t be overlooked. Nor can the distressing notion that another body part is misbehaving.

When we were diagnosed in 2011 we were told there would be screenings and monitoring. We even figured on a few doctors every 6 months. At one point we dreamed of getting them all into a week in August and a week in February and living a somewhat normal life the rest of the year.

Instead, in Meghan’s life alone there have been 5 surgical procedures in the last 13 months. Digest that for a minute, because it’s hard to keep track of.

Currently we are monitoring her thyroid levels through blood every 6-8 weeks, visits twice a year, and annual ultrasound to monitor potential regrowth.

We are monitoring her knee where the AVM resides, through twice a year visits to the interventional radiologist and twice a year visits to the orthopedist. There is an annual MRI. And two of those procedures in the last 13 months have been for the knee. Add in surgical follow-up visits, and Physical Therapy.

The dermatologist needs to see her twice a year. Not because anything has been found on her, but because in addition to me passing the PTEN gene to her, apparently her father and I BOTH have Dysplastic Nevus, a “precancerous” condition where moles have a tendency to become malignant. Couple that with the almost 10 % melanoma risk Cowden’s patients carry, and in addition to the sunscreen, there are necessary scannings.

There is the gastroenterologist, who became necessary almost two years ago when the use of Celebrex to control the knee AVM started to rot out the GI tract.

And the ENT who was added so he could monitor the larynx to avoid unnecessary endoscopy but gauge improvement from the scary state she was in in May of 2014.

Oh, and the doctor who prescribes the digestive enzymes because they work, and no one else will.

And the pediatrician who doesn’t like to go more than 3 weeks without examining Meghan, who also keeps her on Acyclovir, prophylactically for chronic HSV that recurs on her face.

And, don’t forget the hand surgeon, who we love, (who doesn’t have a hand surgeon on the team?) who has twice in 3 years removed vascular lesions, one from each palm. And those surgical follow ups.

Nothing is neat and clean. Nothing is contained. Nothing ever fit into those 2 weeks we once dreamed about. This disease has projectile vomited all over our lives. And it’s everywhere. And it’s messy and gross, and we just want to take a hot shower and move on.

Because we haven’t even discussed fitting in MY appointments…

And a full-time job….

And an honor student….

Who is a swimmer….

And a theater buff….

And a community activist in the making…

All after work, and school, into the city, in traffic, and expensive parking lots, in hopes of getting back local in time for practice.

Last week I told Meghan over the Christmas Vacation we would need to see her gyn, and do her knee MRI, and my abdominal sonogram. She was less than impressed. The general sentiment is that we don’t get vacations, we get days off from school to go to the doctor. I can’t argue.

The physical, mental, and social ramifications of this under-funded, “orphan disease” are having a profound effect on the life of my girl, and her mom and dad too.

That is one of the main reasons we work so hard to raise funds and awareness. Maybe one day…

So tonight, we are grateful. We are on our knees in gratitude, for the prayers that were lifted on her behalf. We are thrilled to hear the words, “It’s not malignant,” but we are painfully aware the journey of monitoring another body part has just begun.

So if we are not shouting from the rooftops, please don’t think us ungrateful. We are not. We are relieved. We took our first deep breath in weeks. But, we did ask Santa for some new body armor, polished and ready for the new challenges PTEN Hamartoma Tumor Syndrome, (Cowden’s Syndrome) are actively placing in our way.

We ask that you continue your prayers, and continue to educate yourself about genetic cancers, orphan diseases and people like us, left to be our own advocates, in a world that isn’t overly concerned with how our story shakes out.

While we are in transit, to and from a lot of places we’d rather not be, we talk a lot. Most of it is complicated. But some of it, is quite simply about how a 12-year-old with a vision is going to change the world.

Come join us on FEBRUARY 21st as we try to draw attention to Rare and Genetic Diseases! Beating Cowden’s Fundraiser LINK – PLEASE HELP US SPREAD THE WORD!

Time with "BOB" our favorite entertainer... — Time with “BOB” our favorite entertainer…

Overwhelmed

Published on December 17, 2015December 17, 2015 by beatingcowdens4 Comments

Someone tried to steal my credit card today. Online purchase of almost $1000. We are pros at this. Text alert. Call to Chase. Charge suspended. Crisis averted. We are pros at being hacked. One day I’ll figure out why. Right now I don’t have time. I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card. Whatever. I have to laugh. Cause if I don’t I might cry. And that would cause a headache and be counter-productive.

I have serious attention issues. Probably because everything I touch seems to morph into a few more things to address. More phone calls, more emails, more papers, more appointments.

My life is not that bad. Truly. I know I’m in good company. Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it. But, the thought that someone would want to BE me makes me laugh a bit. Or maybe they just think I’d be too busy to notice…

Yesterday Meghan was scheduled for a biopsy at 3:30 PM. That is a rotten time for any surgical procedure. It involves a full day of fasting, anxiety and the like. We arrived at 2:30 and got checked in. Then we waited. And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating. Hours delayed. Cause, why not?

It sucks that my 12-year-old knows what a biopsy is. It really, super sucks that she has had so many. It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms. She knows all about pathology and wonders if it will be back before Christmas. I am often struck by the notion that all of this is unfair. But, I have always hated the people, young and old, that whine about things that are “not fair.” The struggle not to become THAT person is real.

I write to bring back my focus. I write to get the thoughts swirling around in my head back into good order. I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say. Some days the task of organizing these thoughts is much easier than others.

We are at a point that our lives are overwhelming. I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming. I mean they are overwhelming in the medical sense. We are past the point where we can even really talk to most people about what’s going on. I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network. I keep the tears I cried about that tucked away.

In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?

How could I expect someone to even respond?

How do you explain that we have “operating room routines?”

What can you say to soothe the lonely pain of recovery. Again?

Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.

Nothing silences her cell phone faster than trying to just share a little of that enormity.

Truth is, we know. We know we are loved. We know we are thought of, and virtually hugged, and prayed for. We know.

But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.

She’ll need another day on the couch. To recover fully. Her Dad will stay home tomorrow. They will watch some TV, and talk without speaking. They are good at it.

And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.

Please don’t take any of this the wrong way. We appreciate the love, and texts, and Facebook messages, and Emails. We love all of you. And we are sure we’ve missed some key things in your lives too.

It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.

I think that’s the word that describes my thoughts best. Overwhelmed.

Now that I’ve got that organized, I’ll get back to the business of

BEATINGCOWDENS!

Thyroid PREvivor!

Published on February 21, 2014 by beatingcowdens8 Comments

The phone rang at about 7 PM. It’s Friday night. I did not expect the call to be from the nurse practitioner at the endocrinology office that manages Meghan’s care.

Wednesday we went in for a surgical follow up appointment. The incision is healing nicely. She is still sore but cleared to return to school Monday… and swimming too. While were there, they asked for some lab tests to be rerun.

Calcium levels which were botched Friday before discharge needed to be looked at again. And the parathyroid hormone to make sure it was still functional.

Before we left the facility, we received word that the calcium levels were actually high. No need for me to even start ranting again.

We were advised to keep her on the current supplementation level for 4 weeks, then wean her off and revisit the surgeon in 8 weeks. We would also see the endocrinologist at that time. Although, endocrinology would be ordering lots of labs in the mean time. All of this I understand.

Except, when the nurse told me she was calling, at 7 on Friday night (when the results from Weds. labs were in the system on Weds) to tell me to keep Meghan on her baseline calcium (the Isagneix Calcium she has taken for almost a year) and lower the supplemental pills they gave from three to two.

Seems logical. EXCEPT when we were discharged in that debacle Friday night they altered the script from 3 to 2 already. So so we go down to one?

The nurse stuttered, confused. I still don’t think anyone understands what a mess they made out of her care on Friday. No, she said. We will rerun the calcium in a week. Anyone want to wager that it will be too high?

As she went to hang up I asked about the pathology I had been waiting on pins and needles for. Almost as an afterthought, she said she didn’t think it was in. Then, “Oh, it’s right here… want me to send it to you?”

Um, YES.

“Everything seems ok, do you have a fax?”

YES!

And that was the end of the conversation. Left to read the pathology report on my own I pored over it as best I could. Confused that it was date stamped 6PM on Weds…. and I found out it was in by accident. But, whatever…

So without the aid of a doctor, and with my somewhat well developed medical vocabulary, everything looks to be

BENIGN!!!!

There are things about it I don’t like, of course. Like that some of the “lumps” are referred to as nodules, while the three problematic ones are called “tumors.” The largest of these tumors measured 2.4 x 1.3 x 1.3 cm, and the others were not that small either. No wonder this kid was choking! There is “hyperplasia” all over the place too. But it seems like the bottom line is, we got in in time.

Cowden’s we BEAT YOU to it!

Of course there is no crystal ball. There is no way to say for sure that it WOULD HAVE become cancerous, although I think we all know the reality. There is no way to know if it could have stayed in a little longer, but I like to think eliminating the anxiety over the constant FNAs, which incidentally had caused quite a mess of scar tissue according to the surgeon (THANK YOU COWDENS!) will be the better choice in the end.

It is ~~easy~~ easier, to make decisions about prophylactic organ removal when it is your own body. You just do what you have to do and move on. But my husband and I had to make the conscious decision to remove something from our child’s body. Can she live without it? Absolutely. But just because you CAN live without something doesn’t always mean you should, and it doesn’t mean that removing it is without consequence or effect.

As a new mastectomy patient I read lots of stories of brave young women who had decided not to spend their lives waiting for cancer to get them. They had taken steps, usually to get ahead of BRCA1 or BRCA2. I immediately admired each of them. They somewhere along the line coined the term “PREVIVOR.”

https://www.facingourrisk.org/FORCE_community/previvors.php

Primarily used to deal with the risk of hereditary breast and ovarian cancer, I think the term has a broader reach. My girl does not need to be a thyroid cancer survivor. She is a PREVIVOR. She got there first.

For this I am thankful.

BEATINGCOWDENS!

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

“The Waiting Place…”

Published on July 2, 2012 by beatingcowdens2 Comments

“…You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting…” – Dr. Seuss

I ABSOLUTELY DESPISE THE WAITING PLACE!

There is more to the book. Lots more, but this is the part that keeps running through my mind, right now, at 1 AM, as I sit buried under a pile of papers. There is some combination of house bills, medical bills, medical errors that need to be corrected, and “this just has to wait because I can’t deal with it right now.”

I successfully organized a lot, and have a bag of shredding to prove it. This makes me happy. I like order. I strive on structure. I can sometimes be a little difficult to live with because in my house every toy, every item, has a “home.” Nothing is left laying around. I will confess to being a bit compulsive.

Why? People ask all the time. Why, with all you have been through, why after the breast cancer, the hysterectomy, Meghan’s surgeries, WHY does it matter if your floor is mopped and your counter is clean? All the time I hear – LET IT GO!

Well, the truth is – I can’t.

I need control. I need to control what I can control, which these past few months hasn’t been a whole heck of a lot. So, if having control over my clean floor and my clutter free desk makes me happy, people are going to have to go with that.

I have mentioned several times that my Mom always says, “You plan, God laughs.” Well we have joked that He has had a few good chuckles this year. While I feel INCREDIBLY blessed for the countless things that have gone well, sometimes the fact that Cowden’s Syndrome invaded our house and stripped me of the ability to plan, schedule, control, and order just about anything really gets under my skin.

After Meghan’s AVM surgery in February, we were told she was likely to need additional surgery in a few months. I did not sign her up for camp, WAITING. We had the MRI last Thursday. She spent 2 hours in the tube WAITING for them to take 5,000 images. I will call again tomorrow, but I will likely spend the week WAITING for the report, and the decision as the whether the next surgery is to happen now or later.

I signed her up for dance once a week, and swimming once a week, but we are WAITING on the MRI results to know if she will complete either of those classes.

Then, with the lack of a structured day she spends her time WAITING and hoping someone will come and swim with her. (That is when we are not WAITING at doctor’s appointments!) Her mother is WAITING for the lingering bleeding from the hysterectomy 7 weeks ago to stop before I head back into the pool.

I feel like these last few months have been full of WAITING. WAITING for surgery, WAITING to go home, WAITING for pathology, WAITING …

I have no control over any of this. I do believe GOD is in charge, and I am so comforted by that belief. It is my human frailty that keeps me searching for ownership and control where it is not mine to have.

I will WAIT. And I will do it as patiently as I can. Cowden’s Syndrome will be full of WAITING – forever it seems.

But, I will wait with a clean, organized house. I can not control this PTEN mutation, or the Cowden’s Syndrome that resulted, but I CAN certainly control the clean counters, and the dog fur… well, most of the time!

Towards the end of his book Dr. Seuss reminds me, and all of us…

“And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

KID, YOU’LL MOVE MOUNTAINS!” – Dr. Seuss

Me 2 – Cowden’s – 0

Published on May 23, 2012 by beatingcowdens1 Comment

The surgeon called. Two days earlier than I expected. My heart flipped a little when she said, “I have your pathology.”

“Everything looks great. It was all totally benign.”

Big Sigh… Thank you God. No more cancer. No more surprises.

For a moment there was doubt. Was I too rash? Should I have waited? Then, reality. They told me there would have to be a surgical uterine biopsy every three months. The scar tissue was already extensive. One ovary was twice the size of the other. There were cysts everywhere. General anesthesia is getting harder for my body each time. Who has time for surgery every three months? The worrying. The waiting for when it will hit. No… I was right. This was necessary.

Can I have a copy? I asked.

Well, aren’t you coming in next week?

Yep,but I need to see it. I need to hold it in my hands.

The beep of my fax confirmed receipt of two pages. Totally benign pathology.

Sigh.

Breast Cancer 85% lifetime risk. Got it, but got them off in time. I win.

Uterine cancer 28% lifetime risk (or something close.) I win.

Two less areas to screen compulsively. I really win.

Watch out Cowden’s. I am up 2 nothing. People say I am not that competitive, but when it’s important I play to win.

And I will.