“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.
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.
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.
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
This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.
Today I dropped my daughter’s iPad. Down a flight of stairs. With no case. I’ve never seen quite so many pieces on a screen. But, it still turns on. And somehow we all managed to remain calm. My husband set the appointment at Apple for Weds. night. Yes, we have “Apple Protect.” Yes, I know there may be a deductible. And, while I called myself several names, I was most impressed that all three of us remained very calm.
Maybe we are learning.
NOTHING is under control really, except how you handle the things that are out of control.
Yesterday I had the dog to the vet. In a little under a year since we rescued her, she has ballooned from 42 pounds to 65. I guess she feels content in my house. We must be doing something right. There was this rash on her belly. And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.
Except in the middle of the night. Then she needs her Mom to love her cause she can’t get comfortable. But, hey, really sleep is overrated.
On Thursday we went to see the ENT. He checks Meghan periodically since the hospitalization 18 months ago to gauge how her reflux is affecting her throat. It was a bit redder than usual this time. So, we juggled a few medicines and left with directions to find a GI. Easier said than done. Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic. So we will seek, and hopefully find…
On Wednesday we had the 2 week follow-up from the biopsy. We left with a script for progesterone which is apparently our only option. It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away. Verified with the head PTEN researcher in Cleveland, through my local geneticist. I hate hormones. Hopefully she tolerates it. Hopefully the cells behave themselves. Three month follow-up, then we schedule the next biopsy. She needs another biopsy so we can have a “clean” one. That’ll be in June. Something to look forward to.
On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work. This is truly one of the highlights of her year and there was no way we were missing it!
Favorite Family Picture! Wearing our “NEVER GIVE UP!” thegsf.org
On Tuesday we stayed home. She missed play practice. She was recovering.
Monday had started out full of energy – with a huge nail in my new tire. Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up. In pain. We ended up spending Monday in the Emergency room at NYU. All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid. The doctor said it’s likely a cyst burst. She was vomiting so badly that morning I never knew WHAT had hit her. Just something hard. The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.
One LAST IV for 2015!
Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island. Maybe not. We’ll never know.
Christmas seems like only a blur. Mom had it this year, a kind respite for me. Some time spent with the family. Some time to just be together. It was perfect. And I am so grateful.
My Family 2015My Sisters 2015Meghan with her Great-Grandparents 2015
The week has been wild, and I guess that’s why I’ve been quiet. But, I am proud to say we have laughed despite the chaos. I can’t think of a day this week I haven’t laughed so hard I cried.
NOTHING is under control. At least not under MY control. And I am going to TRY really hard to be more OK with that.
The schedule for 2016 will not lighten up even a bit. I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th. It will not slow down. I must stay organized, and healthy, and focused. I must continue to eat well and exercise.
Most importantly I must laugh. Often. With my family. With my friends. The adventures will continue. But
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.
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
I am sure I am not the only one, especially the only parent, who struggles daily with wondering if I have made the best choices for my daughter.
Sometimes we argue, and bicker, and I find myself wondering if I am reaching her. Other times I look at all her activities and wonder if she is too busy. Still other times, I look at her and I see those tired eyes, and I wonder what I can do to make things better.
Choices. Life is about choices. And around 12 years old is that transitional time where more and more of the choices become hers, not mine. I can guide, and support, but she is beginning to make more of her own choices, and handle their consequences, be they positive, or not.
She is doing a great job, and truly despite a few hiccups, I could not be more proud. But I will always worry.
The one area though, where the decisions are mine and her father’s to make, are the complex medical decisions. And with Meghan there are many. I have to wrestle with my roles, advocating for her best interests physically, mentally, and emotionally.
This has been a growing process for me, and there has been such a learning curve. With Meghan there is always a medical decision, always a worry, always something that has to be checked out and looked at. Many of these things have potentially serious consequences. But, she is not a medical specimen, with a fascinating genetic disorder. She is a child, a young lady, with hopes, dreams, goals, and emotions. Finding the balance between who she is and what she needs is tenuous.
Sometimes I get it wrong.
This time, I got it right.
The doctors are worried. She needs a biopsy. But, it’s not her first biopsy, and it won’t be her last. There is reason for concern, and we take that concern very seriously. The biopsy was to take place on the 9th of December, the first available. It would keep her from swimming for about 10 days.
She looked at me. I knew in my gut what to do.
No, you’ll have to book her for the 16th. (Even knowing the extra week of waiting would be agonizing for me.)
The doctor looked puzzled. But…
Listen, she has her drama concert on the 10th, and her swim meet on the 12th and 13th. She’s primed and ready to qualify for a championship meet. One week is not going to change that biopsy. You and I both know, it is already whatever it is.
She looked at me. She looked at Meghan.
My eyes locked with my girl. In those eyes she thanked me for putting her the person, before her the patient.
Thursday there was this…
Saturday, there was this…
And before the meet was over she had personal best times in 4 out of 5 events, and 2 qualifying times for Silver Championships.
We have no idea what Wednesday and the ensuing week waiting for pathology will bring.
But, there is a peace in knowing the person is always more important than the patient.
Everybody’s got a million questions
Everybody wants to know the score
What you went through
It’s something you
Should be over now
Everybody wants to hear the secrets
That you never told a soul before
And it’s not that strange
Because it wouldn’t change
what happened anyhow…
…And you can’t talk about it
Because you’re following a code of silence
You’re never gonna to lose the anger
You just deal with it a different way
And you can’t talk about it
And isn’t that a kind of madness
To be living by a code of silence
When you’ve really got a lot to say…
And as happens sometimes when there is a lot on my mind and I’m left alone with my thoughts, music creeps in. Today Felix and Meghan are on a youth retreat with our church youth group. They are spending the weekend. I cleaned a bunch, switched to the winter drapes and started to transtition into holiday mode. It’s been a few tough Decembers. After losing my Dad in December of 2013 and then in the fall of 2014 saying goodbye to Grandma Gen, Uncle Jerry, and our beloved Allie dog, I was intent on getting some time to get my heart and soul peaceful for Christmas. But, despite my best efforts and lots of early shopping complete, my heart is heavy with worry once again.
I know people will say you can’t worry and have faith. If that’s true then my faith needs some work. But, I think its my faith that keeps a leash on worry and keeps it far away from depsair. And for that I am grateful, although things are getting a little tricky here again.
I began this blog years ago with no expectation of personal privacy. I have been gratified by contacts made all over the globe, and have enjoyed having the ability to nudge people towards support or just read that our story gives them hope. But, then I began to write about my daughter. And we had tons of conversations about digital footprints, and things we can’t take back. She has been like a champion, willing to share her story through me in the name of education, advocacy and awareness. She wants a place where people can read about REAL people REALLY dealing with Cowden’s Syndrome every day.
Yet, in her day to day life Meghan is a bit reserved. She is careful with her words, and trusts sparingly. She is constantly aware of the different lens through which she views life, in light of her medical experiences. She is acutely sensitive to the fact that even the children who care, are unsure how or what to do if she talks about her real life. PLUS, so much of what goes on is hard for us to process. There is just no way to expect a typical 7th grader to go there. Heck, I can’t get the adults I confide in to wrap their heads around any of this.
November was supposed to just be me. Traveling to the plastic surgeon to determine if my right implant ripped, and scheduling surgery if needed. I go there Tuesday.
But, November has already been very busy. We met earlier this month with a new doctor, an adolescent gynecologist at NYU. She listened to Meghan’s story. A story that began with what we hoped was just an erratic start to a teenage menstrual cycle. She reviewed the ultrasound from July with the “abnormal endometrial thickening,” and she asked some questions to my girl. Who at 12 is clearly adult size, just shy of 5 foot 7 and a very trim 115 pounds. My girl had her notebook and answers.
Then there were more questions. Because since the middle of August there have been less than 10 days with NO bleeding. So there were blood tests to check hormone levels. And there was a repeat sonogram scheduled.
There was also conversation with this very young, very attentive doctor. A doctor who made no bones about researching Cowden’s Syndrome and telling both of us that she found 2 cases in the literature of Cowden’s patients with uterine cancer – mean age 13.5. Ouch. She told Meghan that she had some investigating to do. And then we would know more. We already had this information stored so the minds race.
Cowden syndrome (CS) is part of the PTEN hamartoma tumor syndrome. Hamartomas are benign, meaning noncancerous, tumor-like growths. Other clinical syndromes that are part of the PTEN hamartoma tumor syndrome are Bannayan-Riley-Ruvalcaba syndrome (BRR; diagnosed in children), Proteus syndrome, and Proteus-like syndrome. CS is characterized by a high risk of both benign and cancerous tumors of the breast, thyroid, endometrium (uterus), colorectal, kidney, and skin (melanoma).
The ride home involved some of the toughest questions I’ve ever had to answer.
And then the hormone levels came back utterly confusing. The doctor said they make no sense. It didn’t gel with the tickened lining and the bleeding. It didn’t gel with anything.
And the ultrasound Thursday at 4 pm was read by Friday. Warp speed for you experienced parents. The doctor called me at 7 Friday night. The conversation led us to the necessity of a biopsy. Too many things aren’t right. “There is no formula, no plan to proceed in a child this young. We just have to trust our instincts.” I like her. She cares. But again, I’ve been doing Cowden’s longer. I have to be alert.
Welome to my world doctor.
We’ve heard this song before. “Could be…” “Maybe…” “We’re concerned…” and it’s been fine every single time.
It’s just the weather is getting colder, and after school trips to Manhattan hold no appeal. Missing work, making it up, racing to the swim practices she loves. We’ve done this all before. Different reasons. But there seems to be very little real break in between. And the pace is hastening.
This week is Thanksgiving. We’ll put the tree up. We’ll work on some cards, and I’ll help Meghan organize a few more things for the Jeans for Rare Genes Fundraiser.
Monday I should hear about a date for the biopsy. Hopefully. Then there will be at least 5 days after that date for pathology.
And the “Code of Silence” permeates a few other non Cowden’s areas of life.
This young lady I have is strong. She is funny. She is tenacious. She is a swimmer. She is an actress. She loves to sing. She is NOT Cowden’s Syndrome. But IT is trying to play dirty with her again. And I just don’t like it one bit.
We remain BEATINGCOWDENS!
(This blog, like all other ones of a personal nature, was approved by Meghan.)
AND WHILE MEGHAN CONTINUES TO DESIRE THE REAL STORY BE TOLD, PLEASE FAMILY AND FRIENDS, RESPECT HER “CODE OF SILENCE.” SHE WILL TALK IF SHE WANTS TO.
IF YOU ARE ABLE, WE WOULD LOVE TO HAVE YOU JOIN US AT THE 2ND ANNUAL “JEANS FOR RARE GENES” FUNDRAISER. A BRIANCHILD OF MEGHAN ALL PROCEEDS BENEFIT THE PTEN FOUNDATION AND THE GLOBAL GENES PROJECT. JUST CLICK THE LINK BELOW.
Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared. The grumbling that would take place was sometimes quite extensive, and I admit to spending a day or two doing some internal grumbling myself. Then I decided to cross the street. It was a simple idea. Just because I had ALWAYS walked on that side of the street, didn’t make the other side a worse choice, nor was it inconvenient. It was just different.
Soon after I decided to cross the street I found I was less cross myself in the mornings, most of which were rushed and hurried, navigating snow and ice covered streets and looking for parking safe for my very low Sonata. One day I even found myself talking to one of the neighbors near the icy house. She volunteered to me that the elderly couple was not well, and while neighbors did their best to keep up, it wasn’t always possible. Made sense. My grandparents are in their mid 90s and live in their own home. They have kind neighbors who often clear their walkway before family can reach their home. But, what if they didn’t. And what if we didn’t live close? It’s easy to judge. I’m guilty too. But I’m working on a simple move, we’ve come to call – “Flip it!”
We talk “Flip it!” when it’s something that can be fixed. When it’s a negative thought that can be changed.
I’m not suggesting the world go all “Ms. Mary Sunshine” all the time. As a matter of fact the person who always flippantly replies,”Could be worse,” to EVERY situation, often drives me mad. Sometimes things just stink. Sometimes they are even worse. But, for most of us, for the day to day stuff, if we just grab a different perspective, things change quickly and significantly.
I think all this came to mind tonight as I sit, preparing to return to work after Spring Vacation.
This was not a fabulous vacation, but yet nothing awful happened. We cleaned lots of things. We saw a few doctors. I made some phone calls. We got through some necessary spring shopping for my girl who managed to outgrow her entire wardrobe again. Yet, I have this feeling in my stomach, this queasy Sunday night anxiety, that reminds me no matter how much I like my job, I’d rather be home with my girl. Even in this “preteen” phase of our lives, she makes pretty good company.
So, as I started to get down, I was reminded of a dear friend, buried under more than her share of worries, who called to tell me she was being laid off. By no fault of her own, I might add, and I was jolted by the reality that the job market isn’t as good as those of us in pretty secure jobs like to think. It made me think that going to work tomorrow, in a building where I am comfortable, with staff and students that are generally nice to be around, and where I will get paid via direct deposit on the 1st and the 16th is a privilege. The alarm will hurt a little. But I will, “flip it.”
Shopping wasn’t easy. There are shoe challenges for this beautiful girl whose feet are each growing at their own pace. But, we found what we needed, even when I had to buy two pairs and toss one of each a few times. There is a dress for Arista, and a dress for the swim dinner, and one for her grandfather’s 80th birthday. There is a beautiful young lady. So while the shopping pricey, that job security was a comfort. When shopping for shoes was terribly frustrating, like a kid in a candy store who can’t eat anything she wants, we remained grateful. In the most basic forms of gratitude, she has her mobility, she has immense upper body strength to compensate for a weak knee. We have the means to keep her dressed as she needs. Can’t always have what you want – but, rather what you need. “Flip it.”
We didn’t make church as a family of three today. Meghan didn’t leave her bed till after 1, even with the blinds wide open and the bright sunny day on her face. The fatigue was too much. The thyroid hormones still unbalanced. The exhaustion from just being “normal” is too intense sometimes. But I got there. To celebrate our pastor. To worship in a room full of kind souls. To watch a baptism, and to pray. I was alone, but yet I was reminded that I am never alone. “Flip it.”
On April 20th we will make an unscheduled stop to the dermatologist. There is a suspicious mark on Meghan’s side. While no one is panicked, living with Cowden’s Syndrome, and our obscenely high cancer risks, make everything all the more unsettling. We will get it checked, and hopefully it will become quickly a memory. But, we won’t wait. Cowden’s Syndrome is a burden. There is never a break from screenings and testing, and checking. But, we get to strike first. And no matter how overwhelming this battle becomes some days, I am always close in heart with my loved ones who have battled cancer, and those who are battling it now. Our screening and preventative medicine while cumbersome is a gift. “Flip it.”
My heart and my head are full all the time. Sometimes I can keep it in check, and other times I need to remind even myself to find way to “Flip it.”
In every house, on every street, in every city, in every state, in every country in the world, EVERYONE HAS SOMETHING. It is our awareness of others, our ability to see things from another perspective, to know when to make others laugh, and when to hold their hand, to know we are not alone in our struggles. That is how we define where our life will go, and the mark we will leave on the world.
beatingcowdens 