Overlap and Regrowth – Living with Cowden’s

Published on October 5, 2016 by beatingcowdens1 Comment

So, the night I was recovering from my breast surgery on August 19th, I haphazardly checked my Email.

There sat an Email from Meghan’s endocrinologist that shook me out of my anesthesia recovery pretty quickly. There is no time “in between” because there is usually SOMETHING going on. Overlap is a way of life.

Meghan had had lab work drawn the 3rd of August. Routine thyroid labs, and some tests from the gyn worked in. On the 18th the EMail from the gyn told me she was suspicious of a few lingering “issues” and we would address them at her late fall appointment.

The endocrinologist’s EMail said he was concerned about the resurgence of her “thyroglobulin” levels. He wanted to now treat her as a “high risk” thyroid cancer patient.

I almost dropped the phone, alone in my dark room. The last paragraph said he’d be on vacation for two weeks, and we could talk when he returned. I read. And I reread.

Decoding step by step – “thyroglobulin” is created solely by thyroid tissue. Someone with a complete thryoidectomy would have non-detectable levels about 3 or so months post operatively. Only thyroid tissue generates thyroglobulin. If some was left behind after her surgery a small number would have stabilized early. But for it to be gone, and then show up… This meant there had to be regrowth. And yes, it happens. Maybe to everyone, but definitely people with Cowden’s Syndrome. We regrow lymphoid tissue.

It’s a superpower of sorts. Except instead of being a really fun, save the world, or generate sunshine and happiness, superpower, it’s more of the – hey let’s add some more worry to your life superpower.

While the pathology on the thyroidectomy was totally benign, the mind can play lots of tricks. Lots of tricks.

I’m not slow. I am pretty well read. I’m equipped with the knowledge that having faith and worry are counterintuitive. Except I’m honest. And with matter of my girl, worry sometimes overwhelms. I never claimed to be perfect.

So I spent the last 6 or 7 weeks retreating. I barely spoke of this fear, this nagging thought that not only could the thyroid be growing again, but what if… what if all those precancerous things that we took out with it were somehow festering.

I made it my job to access the lab work. And it was a JOB. You would have thought what I was asking for just to see a list of messed up thyroid numbers. We live in a pretty crazy society. But, finally, after 2 weeks of labor, and getting increasingly vocal, I received 4 copies. All on different days. All from different people. But, I got to look at the numbers.

I am a numbers person, so I took some relief in the thyroglobulin being only 3. Undetectable was better, but 3 was on the better end of things. It was clearly well under that “10” I had found. So I took to waiting and ticking away the days until the next blood test. There was a thyroid dose change, and 6 weeks.

I broke my toe while recovering from the implant exchange, a few weeks after learning I was suffering not only from a single vocal cord lesion, but vocal atrophy secondary to premature aging, the latter which was likely due to the hysterectomy that became necessary after the breast cancer diagnosis in 2012.

And yes, I meant that to be a run-on.

It all kept me as occupied as I could while I hid in the start up chaos of September. I hate September. But, when you’re suffering personal angst and need cover under which to hide – it’s September for the win. I poured myself into setting up 25 classes, and over 550 students, logistically, and academically. It took some time.

And I kind of just ducked. Phone calls, texts… I played along.

“High Risk” thyroid cancer patient… like a recurring nightmare.

One of the reasons I was afraid to talk was the fear that someone would talk to be about thryoid cancer being the “best” cancer. Please, no one ever do that. When it comes to my child, a survival rate in the 90%s doesn’t soothe me. When it comes to my child, I, like every other parent want 100%. Nothing less.

I was scared.

We got the labs drawn at the hospital on Weds. the 28th.

On the 30th I was exploding. Every second seemed like an hour. Every scenario was playing through my head. So when I got the call that the test wouldn’t be ready till Monday I dissolved into a tiny puddle.

And then I did what every other mother does. I put on my big girl pants and got through the weekend.

Then Monday there was a brief phone call.

The thyroglobulin has returned to undetectable.

WHAT? How does that even happen? I sent out a million questions rapid fire. Most of them had no answer.

Crisis averted. Prayers answered.

I explained to Meghan why her Mom had been a bit extra on edge. She’s really growing up because she was grateful to have not traveled that mental journey with me, and appreciated me letting her in when it mattered.

Next blood test November 11. And we’re going with the theory that the thyroglobulin was a one time deal. An error. A miracle. Whatever. A win.

We’ve got 6 weeks. Some Mommy doctors. Some swim meets. 6 weeks. Sometimes that feels short. Right now it’s blissfully long.

On my knees in gratitude, we remain…

#beatingcowdens

Miles to Go…

Published on September 27, 2016September 27, 2016 by beatingcowdensLeave a comment

September is a marathon of sorts. Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.

September is establishing new routines, in my own classroom, and in our lives. September is learning new students, and new teachers.

Each year, it is about pushing our bodies farther than we have ever been able to. It is not just about surgical recoveries, or broken toes, it is about swim. So much swim. It’s about swim before sun-up, and afternoons too. It is about drama and singing and doctors in between. It’s about finding the inner strength to press on.

It’s about balancing it all. Work, school, after school, meetings, and the like. It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.

This life, this chronically ill life is lonely. I’m not going to lie, or even try to sugar coat it. It is lonely. But, we three in this house embrace and press on. Because, really, there is no alternative.

There is no fault, no anger, no resentment. Reality is that every moment is spent using all the “spoons” we have to get through. At this moment there are no extras. Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare. The rest will have found their own way, and that is a loss we will have to take in stride.

Everyone has something. All lives are busy. All lives have joy, and angst. All we can do is take what is in front of us and do the best we can with what we have where we are.

The worry in my heart runs deep. There is reason for it, yet I battle it all the time. It can not, nor will it, define me, or our lives. Regardless, it lingers always, lurking in the shadows.

My girl continues to amaze and impress with wisdom beyond her years.

For her birthday Meghan had a very specific request this year. One of her gifts was, “The Unabridged Poetry of Robert Frost.” I was familiar only with one of his most famous poems. Meghan read this book fervently for most of August. I think I understand why now.

Lab work tomorrow to keep those thyroid hormones in check. We need our strength to remain

#beatingcowdens

Type A, and Then Some…

Published on September 18, 2016 by beatingcowdensLeave a comment

Calm down. Relax. It’ll get done. Take a breath. Why do you get so worked up?

These words could be spoken in several alternate languages for all the good they do for me. They make no sense. I mean, on a cognitive level I understand the words. And even the context. But, they hold little practical application for my life.

I am Type A. Yep. For it’s highs and lows, positives and negatives, I am a Type A personality. Although like everything in life, the transition between Type A and Type B is a spectrum, I’m still honest with myself.

16 Signs You’re a Little Type A

Go with the flow.

I have a dear friend who has promised to make a t-shirt that says,”I am Flo,” to guide me. She has 4 boys. (She used to be full on Type A. Now she shoves that in a drawer for most of the year, but the chaos sometimes still makes her cringe.)

I am high-strung. I am focused. I am task oriented. I am all about getting it done and getting it done well. I get pissed when other people fall behind on their jobs. I want order, structure, and routine. I make lists on top of my lists, while putting alerts in my phone to avoid missing anything. I have a hard time forgiving myself when I do.

I am a work in progress.

But to some extent, regardless of your personality type, I guess that’s true of all of us.

September is chaos. True, unequivocable chaos. Here, in this house. Here, in my mind. September is the toughest month of the year.

And apparently I’m not alone, because this article really cracked me up. September Is The Worst

If I could jump from August to October, it would be smoother. And I’m not a big fan of wishing my life away. But, transitions are especially tough on the Type A among us.

And, when you’re a teacher – well. That’s just a whole other story. But, for the sake of brevity simply organizing class lists for 25 classes and 500+ students while they are going through new admits, discharges, and interclass transfers is a feat not to be taken lightly. With the knowledge that 9/11 took place just a few days into the school year, I am always filled with a super sense of urgency to try to know who I have, and what their needs are as quickly as I can. Figuring out who has allergies, and who has an IEP is another struggle. Establishing rituals and routines for the classroom of a Type A teacher in one period a week is a bit taxing. Not as tough for the bigger kids, but those tiny kindergarten faces are still in shock. There’s no way they even remember my name, let alone where they should sit in my room. Substitute plans must be prepared, because emergencies don’t have the courtesy of always waiting till October. Copies of the schedule, printed, Emailed, and hung everywhere. Supplies, traffic patterns, expectations, all need establishing and reminding. That’s after the room is set up, and the bulletin boards are complete, and evening back to school night is squeezed into the agenda.

The agenda that is busting at the seams. Because, I know all you moms of multiple children may laugh at me, and whisper about how easy I have it, but that’s ok. Setting up the school and after school schedule for the child(ren) is a full-time job on its own. August looks so nice. The calendar lulls you into a false sense of security, as one by one the activities start-up again. And then all of a sudden you are trying to figure out when you will shower, or fill up the car with gas, or eat, or grocery shop. Never mind hair cuts! There’s the one time deals, like back to school night, and “returning parents swim meeting,” Every minute of every day seems to hold something. I know I have only one kid, but that doesn’t mean she can take herself to swim practice. Or pick herself up. Or that most of the time I can even leave her there, as lingering fears about her health are always present. And on the days she stays late at school for Drama, that’s a little easier, except when it crashes into a meeting at school. And there’s morning study, set up for the intense schedule for the 8th graders, as well as Friday night Youth Group for stress release. I think there’s a few minutes on Wednesday between 3 and 4 for sunshine. Oh, wait… groceries…

And to the left of me sits the Open House Schedule for High School. Still shaking my head as to how THAT happened, I am trying to figure out their days of the week. Because, I think we can make the Staten Island Borough Fair AFTER the swim meet that morning in October. There is the TACHS test, and the Specialized High School Test. Although I’m not really sure when there would be time to prepare. Unless, maybe there’s and app for that?

I haven’t even mentioned our health. Isn’t that just funny? It hasn’t rested one bit. And the most ironic thing, is people don’t realize you shouldn’t mess with a chronically ill Type A. Chances are good they like to excel at EVERYTHING. And in my case, I am willing to throw it at them. Hard.

Some time towards the end of August I had surgery to replace my implants. Far earlier than the 10-15 year life expectancy they had been given, one had moved, and it was time. That night as I lay recovering I picked up an Email from Meghan’s endocrinologist that we should raise her thyroid meds. Her levels were off again. Now raising the meds in and of itself every once in a while is not a huge deal I guess, but Meghan struggles with synthetic ANYTHING, and the fact that we were now 2.5 years post op from her thyroidectomy and she has had more dose changes than I have had in over 20 years can be unsettling. More unsettling was when I read to the bottom of the letter that he would be on vacation for over 2 weeks. So, here I was left to make a dose adjustment without clearing my list of “Type A mother of a chronically ill kid” questions, which, in case you wondered, are far more intense than the typical questions I ask. I scraped together the new dose from the closet, because I think we have Synthroid in EVERY dose known to man, and started her on it the next morning. My local pharmacy informed me that the insurance wouldn’t cover the new script even though it was a dose adjustment and we would have to mail order it. But mail order takes 2 weeks. And there was no telling whether she’d be on the dose for more than 6 weeks. But, whatever. I set my sights on getting a copy of the lab report to learn the magic thyroid numbers.

And then the real battle ensued. I tried to get it from one doctor. They couldn’t release it because they weren’t the “ordering” doctor, even though she had added labs to the order. I called the office of the endocrinologist. Twice that Monday. And again on Tuesday. I got a call back late Tuesday while I was on the phone complaining that I couldn’t see her labs through the “MyChart” system set up at the facility. The ‘ office said they’d send them. The MyChart people said they’d look into it. I waited.

Exactly a week. There were no labs in my mailbox. I called the endocrinology office again. I got someone who promised to send them and did. I called the MyChart people again. No answers, except that some one told me it was hospital policy not to allow parents access to records of their children ages 12-17.

REALLY???????????????????

Listen, while I may not like it, or even agree with it, I can almost understand that there are SOME situations where teens have the right to keep their records. But, this, this is THYROID blood work. She doesn’t want it. TRUST ME. She just wants me to give her what she needs to feel well. That’s it.

I processed all I could about this at the same time that I got ANOTHER bill from this hospital. The date of service looked familiar. I keep copious records. (Type A… :-)) And I was able to see that a bill for the DOCTOR, the PHYSICIAN Group, and the HOSPITAL FACILITY all billed, and were ALL paid to the tune of over $1000 for a 15 minute visit. And NOW, they were asking me for 2 additional Co-Pays. Notwithstanding the fact that we have 2 insurances, so our secondary picks up the co-pay at many of our visits. I called the primary carrier. They reversed the charges, but told me the billing practice was not illegal. Ok, then its immoral. And it preys on people who are sick, or who have sick kids. The insurance company also told me it was ON ME to call them when this happens. ONLY when I call them will they reverse the charges because as per my plan I am to pay one co-pay per visit.

Good, cause I needed something else to do.

By the first Friday in September I had had it. I found the CEO and Head of Patient Relations. I fired off a 14 page Email, 7 page letter, and 7 attachments about everything wrong at their facility.

I have since received 4 copies of the blood work by mail, and 2 phone calls asking it I needed it. One mail even came second day express. Of course it was addressed to my minor child, whose signature means nothing, and who is not legal to vote, or to drive, but who apparently in some alternate universe should be making health care decisions.

I received a letter from Patient Relations that they were reviewing my concerns. I’m not holding my breath.

That same Friday I tripped and fell and did some number on the pinkie toe of my right foot. A clear fracture, although there is some debate as to whether it is displaced, and it will warrant another opinion. The 3 hours I spent visiting the last podiatrist was a waste of my time. So, I am in a post op shoe for some infinite amount of time going forward. Because there is little chance in heck the right foot is getting into a sneaker any time soon. Good thing it’s the perfect month to “take it easy on the foot.” (Insert sarcastic grin here.)

Last Saturday the vocal therapist told me that I have one irregular shaped nodule on my left vocal fold. It still gets to be called “benign appearing.” I was also told I have “significant vocal fold atrophy secondary to premature aging.” Well, that sucks. Because I thought atrophy took place when you didn’t use something. And oh, I use my voice. And the premature aging, well, that’s likely thanks to the 2012 hysterectomy that was a necessary preventative move. It all comes back to Cowden’s somehow.

Over the weekend I noticed that the knots from the implant exchange were getting irritated. This doctor like all the others had been warned, I don’t dissolve stitches. But, as wonderful as he was, he also needed to be shown. I clipped one of the knots myself and there was immediate relief. Then I second guessed myself. By Monday the site I hadn’t touched was red and warm, while the other was healed. I took a photo and sent it to the PA. Come in tomorrow she said. So Tuesday afternoon, my surgical shoe and I trekked into Manhattan. She pulled the stitches, read a low-grade fever, and marked the redness. She scripted me with 5 days of antibiotics but told me to wait 12 hours. Wednesday morning I sent her a photo. “Looks better, right?” I said. “Start the antibiotics,” was the reply. So, I did.

Friday, Meghan made it to morning swim practice. 5:15-6:30AM. I dropped her off, and headed home to shower. I met her with breakfast. We stopped off to drop her bag, and were at her school by 7:22. I picked her up at 2:20 and she made afternoon practice. I was tired. She made it to youth group too. I was in bed by 10.

Friday I spoke to the endocrinologist – finally. I really do like him, but I think we’ve established now that I can’t wait 4 weeks for communication. I don’t think it will happen again. We talked it through. Wednesday the 28th we’ll head to the hospital lab to repeat. We are going there because then there is no chance for anyone to blame a variation on a different lab. But, that’s ok cause there is that free hour on Wednesday… He will call me on the 30th with the results. I believe him.

I also believe that when I take his call on the 30th I will have a tall glass of wine celebrating the END of September.

This morning Meghan woke up with a sore throat. She had to skip practice. That’s always a tough call for her, but the right one. She’s beating Cowdens like a champ, but part of winning is knowing when to slow it down.

Slow it down.

Hmmm.

I am so wrapped up in the have-tos, and the just getting by, that so much life is just on hold. We have to gather enough spoons to save for something fun. Anything. But there are no spares. Especially not in September. (If that last paragraph confuses you – you can Google The Spoon Theory)

Sometimes, when I have a minute, I think about calling some of the friends I miss a lot. But, I don’t. They have crazy wild lives of their own. My fears and anxieties and worries exist, and so do theirs. But for some reason right now, they largely exist separately. I miss them. And I am forever grateful for Social Media and the few minutes I can take, at swim practice or the doctor to catch up, at least on the surface.

I am super-blessed with a husband who not only tolerates my Type A, but works with me. He cleans, and cooks, and remembers to make me laugh. A lot. Often at myself.

I am three years deep into nutritional cleansing that I have no doubt is keeping me fueled for this crazy life. One day soon I intend to find a way to shout from the rooftops and share this secret arsenal of nutritious fuel with the world. Because without it, I’m not sure exactly where this Type A, broken toe, infected boob, woman, who needs a tour guide microphone to teach her classes would be hiding.

Instead of hiding, we remain,

#beatingcowdens

forever!

Yep, it’s broken. But, not me… Nope, not me!

Published on September 5, 2016September 5, 2016 by beatingcowdensLeave a comment

Friday, I tripped over something in my hallway. I wasn’t looking. I ended up against the wall, screaming all sorts of words that I am sure were inappropriate for my daughter to hear. But, for about 60 seconds I let them go. I screamed while the pain was too intense for me to breathe. I screamed about my stupidity. I screamed with certainty that the foot, or at least the little toe, was broken. Because it was that kind of pain. The kind that makes you sure.

After some ice, I tried my best to jam it into a sneaker. Less than 2 weeks post op from the implant repair, I was not interested in losing my ability to walk to relieve stress. However, my efforts were in vain. That toe wasn’t even close to making it into my sneaker. No way. No how.

I took Meghan to swim practice, and called my husband to meet me. I figured when he tagged in I could go for an x-ray. Just on the off-chance it was more than the toe. Because every memory I had was of “you can’t do anything for a broken toe,” I was hoping…

I kept busy in the hall above the pool. I had my laptop and all I needed to continue to pepper NYU with what I really feel are immoral and unethical billing practices. Along with 2 weeks worth of a records retrieval nightmare, where I could not gain access to Meghan’s lab work from earlier in the month while her doctors were on vacation, and the online system was a classic, epic failure.

I propped the foot to the side, and used the hotspot on my phone to send the 14 page document I had compiled off to the CEO of NYU and the head of Patient Relations. Then I copied one of her doctors, a lovely woman who I doubt has any clue how these things are done.

When I finished that I called on a bill I had just received. Same doctor for Meghan. Two dates of service. No evidence of my secondary carrier billed. My $30 copay times 2 requested as payment. I asked, innocently why the secondary isn’t mentioned. I was told they didn’t pay. Didn’t acknowledge the claim.

I made my notes, to follow-up. I did. Amazing what technology will do me. This facility was paid THREE times for the January visit alone. A visit totalling about 20 minutes generously. They COLLECTED over $1,000 from the three separate claims. And they were STILL hitting me for money. My older, weaker self would have paid. Just to shut them up. I’m not that person anymore. I am strong. I am tough. I am morally and ethically strong-minded. I will pay what I owe. The rest I can do with as I decide, not them.

They are sneaky. They prey on those who can not figure this out. I am developing a spread sheet I will have to enter all data into to stay on top. But, I will. And when I have enough I will expose them. I will do it for the people who can’t. Because some things are just flat out wrong.

I thought of all this as I found my way in the x-Ray machine Friday evening. The tech was sweet. She was kind. We laughed. Without saying anything, she said it all. “I think you might want this CD. Why don’t you just wait for it?” Sure…

An elevator ride up I was informed of a displaced fracture of my right small toe. They can’t be sure if it’ll need to be properly set. I need to wait about a week. Until oh, I don’t know, the FIRST DAY OF SCHOOL?

Saturday 9/3 - I did manage a polish change! — Saturday 9/3 – I did manage a polish change!

I spent Saturday morning in vocal therapy. Apparently she’s waiting for confirmation that I don’t actualy have nodules, but rather some type of vascular lesion on the left vocal cord. Tiny. Benign. Therapy the same. Prognosis not quite as good in terms of self-resolution.

Stitches sticking through the streri strips on my newest boobs, a boot on my right foot while I track down a doctor. A voice that may work, or not…

School starts for teachers tomorrow. A hot mess of me headed in to meet my schedule.

I am bent, bruised and strained. My toe may even be broken. But, not me. I won’t be broken. Ever.

It’s mind over matter in so many ways. And this mind. Well, it matters. I’m all over it. #beatingcowdens is not for the faint of heart, but we’ve got this.

For right now, with a little help from the Captain… 🙂

I have nodules WHERE???

Published on August 3, 2016 by beatingcowdens4 Comments

It took me over a week to actually wrap my head around this one.

The summer is not just time for Meghan to get checked and cleaned up, it’s time for me too. And this summer I tracked down a new doctor.

Sometime around the end of April my voice started to bother me. I was getting hoarse easily. I explained it away as allergies, season change, dust, “I must be getting sick,” and everything else I could think of. Except it bothered me. And that creepy voice that sneaks in sometimes to remind me that my body has already betrayed itself once, started to take hold.

After almost 20 years of teaching, and never ever struggling to use my “teacher voice,” I couldn’t project. Simultaneously with the pain in my right implant, and the nodule being watched on the remnants of my thyroid, it started to get in my head.

I went to my primary doctor, and wasted several hours to get nothing that resembled an answer. They suggested a thyroid sonogram. I never went back.

I started researching ENTs locally. I found very few who took my insurance, and fewer who seemed to have any voice experience.

I turned to the internet and found a voice specialist at a facility I trust in NYC.

I don’t really know what I expected from the exam. I filled out the preliminary papers, and gave the basic Cowden’s rundown. They did a few tests externally with a microphone, and another with a camera in my nose. Not pleasant, but incredibly informative.

And there on the screen was a “benign appearing” nodule on the side of my vocal cords, causing them to briefly lock together when I make certain sounds. Fascinating. But bothersome all the same.

Not mine, but they looked a lot loke this. — Not mine, but they looked a lot like this.

They reassured me several times that the nodules were “benign appearing.” I appreciated that, but reminded them many of my scars are from “benign, and benign appearing” growths. I asked about the prevalence, and if it was linked to my Cowden’s Syndrome. I got a very definitive, “Maybe, or maybe not.” These nodules occur in the general population, they can be caused by overuse, but what had me perplexed was the problem seemed to start when I did the LEAST amount of teaching for the year. I was out of my program for quite an extended time between spring testing and other professional obligations. So, why now?

And, what to do? September is looming, and my life will be in the classroom many hours a day. I need my silly voice, my sing-song voice, my stern voice, my loud voice, my quiet voice, and my serious voice. Elementary school students expect, and deserve nothing less.

I was given a number for a “voice therapist.” And as of now my voice is getting a workout leaving messages for her. I asked the doctor what are the chances this “voice therapy” could control the nodules. He told me it “couldn’t hurt.” I asked if this was like giving me compression hose for my horrendous veins? Is it going to be a situation where voice therapy delays an inevitable surgery? Because any scar tissue on my vocal cords seems scarier than the painful legs I’ve contended with for years.

The answer is, there is none. I will persist and connect with this voice therapist. I will hear her out and try my best. And in 4 months or so I will follow-up with the doctor to evaluate. That is assuming the fall semester goes off without incident, and all my new students can hear me loudly and clearly.

For now, I’m using mostly the quiet voice. Often mumbling to myself. Because whether this is Cowden’s related or not, the whole “growing things” in my body is incredibly old.

Watch. Wait. Check. Recheck. Remove if necessary. That’s how we roll.

#beatingcowdens

Counting… Our 400th Post!

Published on July 21, 2016 by beatingcowdens1 Comment

“Count your many blessings, name them one by one…” Grandma used to sing years ago when we would complain about nonsense. She was a little tough sometimes my Grandma, and maybe that’s where I got it from. But, many times she was right, whether we listened or not. (Maybe that’s where I got that from too? ;-))

I like numbers. They are logical. They are what they are. In a world that often makes no sense at all, I find order in numbers.

Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.

This marks the 400th post on this blog. While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been. It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.

Cowden’s Syndrome is rare enough that it can be a lonely diagnosis. Being able to reach people the world over has been a victory for us, and them.

With over 170,000 hits on various posts I know we are getting the word out. Slowly.

I might have wanted to celebrate this post. I might have wanted to make it really special. But, I’m counting something else today.

Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter. Today, I listened as I always do, reciting the directions in my mind before she spoke. Really my only interest was the time. The rest is routine. I want to stop counting. I want to just go with it. I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important. And you become less important. And that is a gift, denied to many, cherished and appreciated.

Somehow though, if I stop counting for her, it makes her struggle feel less valid. The numbers give her strength. A badge of courage. Something concrete in this world of abstract.

My post last night was about “Patience”

https://beatingcowdens.com/2016/07/20/the-waiting-place-2/

And as I poked around the blog this morning I was taken back years, through so many similar posts.

https://beatingcowdens.com/2013/01/10/blessings-and-patience/

https://beatingcowdens.com/2012/07/02/the-waiting-place/

https://beatingcowdens.com/2015/05/06/hurry-up-and-waiting-rooms/

https://beatingcowdens.com/2015/08/28/losing-count/

Their similarities are uncanny. I guess the story doesn’t change much. Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…

So I’ll leave this 400th post as unremarkable. Nothing has changed. Nothing will change. And that’s the precise reason we keep counting, and keep telling our story.

Tomorrow, surgery number 17. 9:15 arrival. As usual, prayers always appreciated.

#beatingcowdens 400th post!

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.

Justifying Our Existence

Published on July 7, 2016July 7, 2016 by beatingcowdens2 Comments

There was a post that showed up in my news feed this week from http://www.themighty.com. Read The Secrets of People with Chronic Illness here

I can’t seem to shake some of the thoughts from my head.

As I write, school ended for the summer 9 days ago. In those 9 days we have seen 4 doctors between us. There are 9 more SCHEDULED in the month of July, including a biopsy for Meghan on the 22nd.

And, while I did take some time over the weekend to reconnect with some dear friends, and I have accomplished a few mundane tasks like routine car maintenance, the vast majority of every moment of those 9 days has been spent justifying my existence.

Fortunately, I have enrolled Meghan in a theater camp where she is from 10-4, spending some time with kids her age. Of course, the wear and tear on her body, even after only 3 days is evident. She struggles with pain so badly. On her feet, determined to fit in. Determined for me not to say too much. Sometimes I have to let her go. I have to let her try. I have to let her decide. But, it hurts. It hurts her, and it destroys me to watch her battle with her body. I watch her put that game face on in the AM, and not take it off until after swim practice follows camp. No one will ever tell me she is anything but driven. But, no one would ever know to watch her…

Usually by this point in the summer my work bag is unpacked, washed and tucked away. Often my lesson plans for September are mostly framed out. I am yet to take the list I frantically formed as I packed my room the last day of school out of the bag.

Instead, the yellow legal pad sits near my computer. I write, and cross out, and rewrite, as I call, obtain records, set appointments, and clarify tests required by various doctors. I rearrange schedules to allow for coverage for Meghan as I trek to my own appointments at the most inconvenient times.

On the 18th I will meet a new plastic surgeon, as the old one no longer accepts our insurance. I never imagined needing a new plastic surgeon only 4and 1/2 years post op from the mastectomy, but it seems I do. I’ll wait until I meet him to elaborate on that… Sometimes, although not often, I do feel like this…

I can often count on 4 hours minimum round trip for the 10 mile trek. Never mind the cost. We just don’t even add it up. Instead, we thank God for our jobs and the insurance we do have.

I received a phone call yesterday from a lab that was running insurance information to obtain testing for Meghan requested by one of her doctors. Except it’s not covered at all. $16,000 they said. I, who denies my child nothing politely said, “we’ll find another way”. And we will. Because that is just insane.

I’ve sent 3 emails to the office manager of the office doing her procedure on the 22nd. I simply want to know what date to leave free for the follow-up. I know there will be one, and I want to plan a few summer adventures in the time that my fish will have to be out of water. I also asked for the pathology from her December procedure. For about the 8th time. Just keep adding checks and dates to the list.

When things get really bad, like with the bills I’m fighting in collections, they get a folder of their own. The SUPER troubling places, like the mail-order pharmacy, have a notebook.

We do our best to stay upbeat. We count our blessings regularly. We know it could be worse. We know the anguish others suffer far surpasses our daily struggles. But, no matter how much we focus on a positive attitude, and believe me we do, it does not decrease the pain, both physical and emotional. The struggle is real. Whether we like to admit it or not.

I reached out to our genetecist this week. Darling man said he would always help, and didn’t want us to waste a trip on him. I told him I was having trouble with my voice. I’ve been getting very hoarse for 8 weeks or so. No infection. Three allergy meds on board. But, I do have Cowden’s Syndrome, that tumor growing thing I sometimes forget belongs to me too. And I have a history in the neck. A 3.5 pound lipoma in 1988, and multinodular goiter on the thyroid in 1993. Both removed. Both benign. But…

He referred me to a head and neck surgeon. I finally mustered up the courage to block out at least one more day of summer, and call for an appointment. I was met with the inquisition on the phone. I never got past the receptionist.

“This doctor is a head and neck SURGEON.”

“Yes, I know he’s a surgeon, I was referred for consulation.”

“Well, he doesn’t just SEE people, you need a diagnosis and a referring doctor.”

“I have both. C-O-W-D-E-N Syndrome. A mutation on the PTEN gene that causes benign and malignant tumor growth. I was referred by my genetecist, also a doctor at your hospital.”

“Well, what tests do you have? He will want a report, a CD, something…”

Sigh. I just don’t have the fight in me today. “Ok, you win. I’ll find someone else.”

“Come back to him when you have a diagnosis.”

Whatever. Just whatever. Sometimes I get a little tired.

Thats when I shake it off with a quick walk.

I emailed the genetecist back. I’ll wait. Again.

I have this pool in my backyard. And plenty of people I’d like to reconnect with. And some lessons I’d like off my plate. And a book I’d like to read.

I’ll get there. In the mean time, I’ll be at my computer. Emailing. Arguing. Advocating. Communicating. Researching. Justifying my existence, and

#Beatingcowdens with whatever it takes.

In a Dark Room…

Published on May 30, 2016 by beatingcowdens1 Comment

I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

A Letter to Me as a “Mommy-to-Be”

Published on May 8, 2016May 8, 2016 by beatingcowdensLeave a comment

Dear 30 Year Old Me on Mother’s Day,

Listen up. Yes, you – acting as the general contractor; living through and participating in your house overhaul, while carefully moving your pregnant belly out-of-the-way. Do me a favor and sit down a minute. You don’t sit much, but you focus better when you do.

Life is hectic, I know. You’re working full-time, working on the house full-time, and trying to wrap your head around this Mom thing. You have a lot to do. I get it. There are papers to process, contractors to fight with, lessons to plan, furniture to order, walls to paint, and tests to grade. There is this small, ok, large human growing inside you. There is so much to think about, but there isn’t time to stop.

Do me a favor, and make time? I mean it. Force it in. Make time for you and your husband to just be. Make time to laugh. Make time to rest. Make time to get in the car and drive the not so far distance to see the handful of friends that have always had your back. Because, believe it or not, your new life will make this chaos look like a day in the spa.

Those friends, they are high quality. And you will always have each other’s backs. But, they will have husbands, and children and houses, and obligations of their own. Before you know it you’ll be keeping in touch with each other’s lives via Facebook and blog posts. (Yes, you’ll have a blog, but I’ll explain that later.) You’ll regret not seeing them more. Not sneaking in a few more dinners out, or some drinks and dessert. The time for that will come again, but it’ll be much later. And sometimes you’ll get lonely. Really lonely.

While you’re still sitting down, reign in some of those day dreams about the smooth way everything is going to go once the baby joins you. Broaden your definition of healthy into a “spectrum.” Refocus yourself onto the important jobs of motherhood; guardian, advocate, supporter, guide, confidant, conscience, role-model, nurse, doctor, therapist, just to name a few. Don’t bother looking at Pinterest. Your life doesn’t work there. Actually, MOST lives don’t work there.

That baby inside of you isn’t going to stay there forever. One day it’s going to make its way into the world in grand fashion. And she, (yep, you’re wrong, it’s a girl) will change your life in ways you could never imagine. By the way, if you can get through to that doctor before the induction, try to save yourself the bags of Pitocin and the HOURS of labor. She’s got a big head just like you. The C-Section is inevitable.

And, she’ll be the biggest baby in the NICU. Right from the start you’ll hear about her feistiness. The nurses don’t lie. Right from the start you’ll have to change your perceptions of how this mothering thing was going to go. From the very first hours you’ll have to learn to go with the flow because you’re about to set down a path you could not have imagined.

For about 18 months you will sleep rarely. She will cry and scream and yell in ways that your family will forget, but you will remember for life. You will learn how to function on raw nerve. You will use the baby pouch you got skillfully to sneak in an hour or two of sleep without dropping her. Because you know she’s not “spoiled” even though she only rests on top of you. You know it’s more. You know it’s her belly and you will hang on when others want easy answers and excuses. You will fight for her because you are her mom. And THAT is what mothers do.

By the time she’s one there will have already been a week-long hospital stay and a surgery that left the doctors “perplexed.” This is only the beginning. Dig in hard and sharpen your instincts. Trust yourself. Ask tons of questions. Learn early that doctors, and therapists are a dime a dozen. Settle for nothing less than the best.

Because those therapists, those Early Intervention therapists, and the Physical Therapist you’ll pretty much use for life, will have some of the greatest influence on your parenting, and on the health and growth of your girl. They will change your world. Listen carefully and learn.

This girl is going to get stuck like a pin cushion and shuffled from specialist to specialist. She’s going to confuse them, and amaze them. She will start to retreat into herself. All of a sudden she’ll be two, and not making a word. Hang on and don’t let her go. She’s not autistic, and never was, but she is medically complicated and she is not well. You will try as hard as you can. You will read, you will frantically research. You will seek out expensive alternative specialists. You will even record her agony for your husband so you can press on for her care as a united force.

You will fire pediatricians, doctors and specialists alike. You will slowly find your confidence. You will become a master record keeper. You will try things that are “different” just to see what happens. You will step over your toddler for two weeks as she tantrums on the floor when you take away her milk. You’ll worry that she’ll never eat again. You’ll get angry when you realize that the food she’s eating is making her more unwell. You’ll learn about the immune system and the GI tract. And by the time she’s two and a half you’ll get a whole lot of babbling. By the time she’s three and a half the speech therapist will cut her loose. Her belly will be flat. She will be much calmer, and she’ll be in a regular preschool with some “transitional and sensory issues.”

Her baby sitters will be tortured by your need to have every detail written down. Because, like a detective you will spend nights poring over things to make connections. You will have volumes of daily diaries, and binders of lab results. You’ll never leave and office without uttering the words, “Can I have a copy of that?”

She’ll grow physically and intellectually. You’ll cherish every moment extra, because you’ll know from where she came. She’ll have surgery after surgery, and a few more hospital stays. There will be scans and specialists to check that knee pain, the joint pain, and every other bit of chronic pain that will plague her young body. It will hurt you to watch, but you will be strong for her. You will not give up. You will not give in. You will press on.

And then in third grade there will be that genetic diagnosis that will turn life on its ear again. “Cowden’s Syndrome,” a “PTEN Mutation.” And you will start to study genetics.

But while you are studying you’ll learn about the health risks and you’ll focus on solutions. You’ll try desperately to wrap your head around the realities of this tumor provoking condition. You’ll hear the word “cancer” more times in reference to your girl then you’ll care to count. Then, you’ll get that positive test result too. That day when guilt takes over for a while. That day when you realize she doesn’t just have your hair and your smile. She also had this syndrome because YOU have it too. Don’t hang out in the pity party for too long. It’s not good for either of you. Trust in the grand plan.

Oh, and those relatives you love so much, the parents and grandparents, they won’t be around forever. I know that’s hard for you to imagine, because there are so many, and they are ALWAYS there. But, one day it will end. Do me a favor and take a few extra minutes and cherish each of them. Even if you’re really tired. Swing by. Say hi. Pick up the phone. You’ll be glad you did. I promise.

Days will blend into weeks, and weeks into months, and months into years. You’ll blink and wonder, but there will be no time to catch your breath.

Because it won’t be long before you’re in surgery for a double mastectomy. Yep. With lifetime breast cancer risks in the high 80%s, and your own history of 7 biopsies, this PTEN diagnosis took the decision from your hands. Don’t stress over it for too long. You’ve got good instincts. The double mastectomy with immediate reconstruction will be one of your best decisions ever. Get home to the angel that saved your life. The pathology report will confirm cancer was lurking in the breast proclaimed clean by MRI a month prior. You don’t need perfect breasts. You need vigilance. This beast will nip at your heels through a complete hysterectomy weeks later. It will swipe at you. Take care of yourself. Recover quickly and completely. Lose some weight. Fill your body with excellent nutrition. This is going to be a battle and you’ll need all your strength.

One day you’ll count and realize there will have been 16 surgeries for your girl. There will have been 16 times when she was walked into an operating room, and put to sleep. 16 times when you’ve prayed harder than you’ve ever prayed in your life, and 16 times when you know the pure joy of gratitude when you see her awake for the first time when it’s through. And you’ll know in your heart 16 is only the beginning. But don’t get caught up in that. TRY to stop putting it all together. TRY to just breathe, and enjoy the moments as they come.

One day you’ll look at your baby, all strong and determined. She’ll be taller than you and you’ll wonder how it went so fast. She’ll be mature, and so smart. She’ll be talented and compassionate. She’ll still be feisty and competitive too. She’ll be as athletic as her body will allow. She’ll swim and sing and be active in fundraising and outreach work too. She’ll be passionate about raising awareness for Cowden’s Syndrome and other rare diseases. She’ll encourage you to tell the story of the struggles you two face. Even though she’ll have a deep understanding that everyone has something, the rarity of this syndrome will cause her to implore you to get a real-time record out in the world. You’ll blog diligently, as often as you can, making sure to have her edit most of your work.

She’ll struggle sometimes, and so will you. Sometimes you’ll even argue. But, it’ll be the most amazing relationship you can imagine. You two will spend more time together than most other mother-daughter duos. Most of your time won’t be on “fun” adventures, but you’ll have hours and hours to talk and get to know each other. You’ll realize she’s spectacular.

If I had to pick the most important advice, it would be to tell her she is enough. Be sure she lives and breathes the reality she is loved. Deeply, and sincerely. Make sure she knows deep in her heart that she is enough, and all she ever has to be is who she is. Middle school is tough work, and she’ll need to believe this in her heart from the very beginning in order to remain true to herself during those years.

It’ll be a busy 13 years. But, every single moment will be so worth it. Trust yourself. Love each other.

Mother’s Day is really every day that you are hugged, loved, and respected. If you put the time in, it will pay dividends later.

I’m not sure what the rest of the journey has in store for us, but I’m sure we’ll be just fine. We’ve got a pretty awesome kid, and we are #beatingcowdens together.

With love,

Your 42 Year Old Self