There are lots of things that I like about Saturdays. First, my husband is home with us, and that makes any day better. I love the routines – wash the sheets and towels and dog beds, head to the bank, general clean up, and the race to see how fast it can all get done so the day can start.
Perhaps what I love the best about Saturdays is that they are almost always free of doctors. Unless we are sick or have some kind of emergency, Saturday is a doctor – free day. That means no appointments, no waiting in offices, no waiting for phone calls that don’t come (UGH!), no dealing with billing offices and in and out of network nightmares. NO DOCTORS!
Have I mentioned I love Saturday?
And today it was even better. Beyond “normal,” we had a surprise visit from 2 nephews, all grown up now – 18 and 23 – who spent this really HOT day, swimming with us, and just hanging around to chat, play Kinect, and even Uno.
Kinect Adventures (Photo credit: Wikipedia)
We ate a delicious and healthy dinner. Grilled chicken on the barbecue, roasted potatoes, chick pea salad, and grilled zucchini from our garden! And, it was ALL prepared by my husband (who is incidentally a MUCH better cook than I will ever be!)
It gets better – if you can imagine. Today, for the first time since last summer, I put my new fake boobs, and my post hysterectomy body into a bathing suit – AND I SWAM! 🙂 And, it was ok. The suit fit. Everything stayed where it belonged. It looks like the hysterectomy has finally healed, and shhhhhhh…… even if it was just for today –
it was really nice to have a breath of normalcy in our lives!
I don’t have too much to say tonight. This pretty much sums it up.
I belong to a few “inspirational” Facebook groups, the ones that send the good photos.
Usually I laugh or smile, but every once in a while one or two hit home. The first one resonates with me, on a day when I just want to scream “Enough is ENOUGH!”
The second one defines who I am, and WHY I am. My little girl keeps me focused and moving forward.
If you don’t have a child, you have something you love. You have a mission. Stay focused. LOVE and HUGS to all my “friends” out there who “get it.”
“… Who you are ain’t what you’re going through, so don’t let it get the best of you…” Group 1 Crew
Shot of a tennis racket and two tennis balls on a court. Taken by myself of my racket. Intended for use in WikiProject Tennis Template. vlad § inger tlk 04:59, 18 June 2007 (UTC) (Photo credit: Wikipedia)
I don’t play tennis. Never have. I am not that quick, athletic or coordinated. But I have always wondered what it is like to be the tennis ball. Back and forth, back and forth. No real purpose, no one stops to look at it. They just quickly replace it when it goes out of play.
I am starting to feel a bit like a tennis ball these days.
I have gone through more doctors for Meghan and I in the last 12 months than I care to count. They are either interested in helping, but too confused to figure it out, or, worse, they are too lazy to try to figure out anything to do with a syndrome they have never heard of.
I can teach them the basics – if they would listen. PTEN is a tumor suppressor gene. Ours is broken. We make tumors. Especially in certain spots. When things are weird, look for them. Regularly screen for them with the same tests you order all the time. Just screen more often and before we have symptoms. That will help us live.
I have journal articles. I have my reports, and Meghan’s too.
I was told last year to get myself an oncologist to manage my case. The one close to home lasted only a few months. Irreconcilable differences. Maybe he had wax in his ears.
So I took a break from looking. The double mastectomy, the breast cancer, the hysterectomy – they took some time. Now, as I am healing from the hysterectomy I get a referral from my gyn oncologist to a general oncologist she knows very well.
I called his office. I faxed 39 pages of my test results and history. They called to say I needed someone else – he wasn’t right for me. No, I insisted. Dr. B said he was the doctor I needed. I faxed him and article from the Journal of Clinical Cancer
A Tennis ball Author: User:Fcb981 (Photo credit: Wikipedia)
Research, and the request that he please just look at me.
No.
I got a referral to an oncologist who specializes in genetics. She doesn’t take my insurance.
Meghan and I have a lot of “deep” conversations. More than you might expect an 8 (almost 9) year old to be capable of.
Today she was wondering why we have to have Cowden’s Syndrome. Why is our PTEN gene broken?
Well, I said to her, everyone has something to deal with – and this is what we’ve got.
She thought for a minute, trying to figure it out herself, and then said, “What do you mean?”
“No matter where you go in the world, in every city and town, in every street, in every country, on every continent – EVERYONE is dealing with SOMETHING.”
I told her there is a saying that goes around “If everyone could toss all their troubles into a circle, and choose which ones we wanted, we would likely take our own back.”
Almost indignant she said,, “Why would I take back Cowden’s Syndrome? It stinks.”
“Yep, but would you trade it for the family that doesn’t have enough money to buy food, the family that lost their house to a fire, the family where the parents have lost their jobs, the family where the parents aren’t in love, or are divorced, the child who can’t have any pets because her sisters are allergic, the family whose Mom or Dad died, fighting for the freedoms we celebrate today?”
It doesn’t take much for her to “get it.” That’s why I love her so much.
Christmas 2011
“There are kids without dogs,” she said. “Lots of them. And I really love Allie and Lucky.
There are kids without their own room, or even their own house.
There are kids whose Moms and Dads don’t love each other.
Some kids have other diseases where they have to go to the hospital even more than me.
Ist Holy Communion 2011, with GiGi and Pop
Some kids don’t get to know their grandparents or their great- grandparents, like I do.
I get it Mom, I think I do. But, still it seems like some people have no worries, no problems at all.”
“Those are the people I worry most about Meghan. Those are usually the people whose hearts hurt. They are often alone, or insecure, or feeling unloved. Trust me, EVERYONE has something.”
Fireworks!
“I guess you were right Mom. I don’t like having Cowden’s Syndrome… but I wouldn’t trade our life for anyone’s.”
“Iam glad – me either. Our “thing” to handle is medical, and we will get through it – together. Tonight we celebrate our country, and the freedoms it was founded on. We celebrate the soldiers who fought for our freedoms, and the ones that continue to fight. It is those freedoms that allow us the ability to battle whatever “thing” plagues our own life.
WARNING – This post may be uncharacteristically whiny and cranky. It is boring, and lacks any pictures or “fun stuff.” Maybe its the heat. Maybe its the start of menopause, or maybe, just MAYBE it’s the WAITING!
So, last year when we were first diagnosed with the Cowden’s Syndrome, the geneticist suggested my daughter and I each be followed regularly by an oncologist who would act as a ‘case manager’ of sorts. Seemed logical. We got Meghan set up with a doctor in NYC. She actually has experience treating “patients like us.” We thought we were golden. She ordered the initial scans for Meghan (and even for me) of the brain. She ordered Meghan’s thyroid sonogram, and her biopsy last November.
Well, that biopsy was a traumatic train wreck to say the least. To make it worse, when we spoke to the oncologist about it she was defensive of the doctor she had sent us to. We moved the biopsy slides to another hospital and she was obviously annoyed. She is still Meghan’s oncologist of record, but we haven’t seen her in months.
I tried an oncologist here at home. He listened, the first visit, and the second. On the second visit he suggested I look into having the remainder of my thyroid removed prophylactically. He gave me the name of a surgeon and told me to go ASAP. So, when I called to make an appointment with the surgeon and he wouldn’t see me, I called my oncologist back. He would not get on the phone with me, and would not call the doctor on my behalf. I was livid, but found myself an endocrine surgeon who (at least for now) advised against removing the rest of my thyroid.
When I called my oncologist back in late January to schedule my breast MRI. I was told it was too early. I reminded them that February marked 6 months since my last, and in fact it was right on time. They refused to authorize the MRI until late March. Well, we know how that turned out. When they called me with the authorization number I laughed at the irony of the whole thing, and told them I didn’t need another appointment.
So, there was the mastectomy in March. Great surgeons, great catch, great job.
There was the hysterectomy in May. Again, great surgeon. Job well done.
The surgeon in May recommended an oncologist in her practice for me. I called to make an appointment. I was told to fax my paperwork. I asked if they could just look in my chart. It is all shared between the doctors. No, please fax it. Ok – 39 pages later – and a huge fight with my fax machine… I got it.
They called today to tell me the oncologist thinks I should see a geneticist instead. Gee isn’t that ingenious? That is how I got diagnosed to begin with. Dope. They will look into it and call me back.
I am starting to feel like PTEN mutation is some sort of plague. What is WRONG with these people?
Which brings me back to my girl. In February the surgeon(who people travel the world to see) for her AVM said that her next surgery would need to be at Boston Children’s Hospital. They were not sure exactly when, but July was floated as a possibility. So we went last Thursday, the 28th of June for her MRI. After a grueling 2 hours, we left with a CD in hand, and the promise that the results would be at the NY surgeon’s office Monday.
I took the copy of the disk I had, put a cover letter on it, and sent it to the Boston surgeon we met in April, promising him a report would soon follow.
Monday I called the NY surgeon for the results. I was told the disk hadn’t arrived. They would call me. I called again this morning. I reminded the receptionist that I really was anxious about the results. It’s on his desk she told me. She also told me he leaves today for vacation till Monday. I asked her to be sure someone calls me today. I carried my cell phone ALL day.
It’s 10:04. I guess I will be waiting till Monday. Really? I know it could be worse. It could always be worse, but enough with the lack of compassion, the inability, and lack of desire to follow through. Enough with being scared of treating us because you don’t quite understand what we have. Enough WAITING!
“…You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place. The Waiting Place…
…for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or a No or waiting for their hair to grow. Everyone is just waiting.
Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting…” – Dr. Seuss
I ABSOLUTELY DESPISE THE WAITING PLACE!
There is more to the book. Lots more, but this is the part that keeps running through my mind, right now, at 1 AM, as I sit buried under a pile of papers. There is some combination of house bills, medical bills, medical errors that need to be corrected, and “this just has to wait because I can’t deal with it right now.”
I successfully organized a lot, and have a bag of shredding to prove it. This makes me happy. I like order. I strive on structure. I can sometimes be a little difficult to live with because in my house every toy, every item, has a “home.” Nothing is left laying around. I will confess to being a bit compulsive.
Why? People ask all the time. Why, with all you have been through, why after the breast cancer, the hysterectomy, Meghan’s surgeries, WHY does it matter if your floor is mopped and your counter is clean? All the time I hear – LET IT GO!
Well, the truth is – I can’t.
I need control. I need to control what I can control, which these past few months hasn’t been a whole heck of a lot. So, if having control over my clean floor and my clutter free desk makes me happy, people are going to have to go with that.
I have mentioned several times that my Mom always says, “You plan, God laughs.” Well we have joked that He has had a few good chuckles this year. While I feel INCREDIBLY blessed for the countless things that have gone well, sometimes the fact that Cowden’s Syndrome invaded our house and stripped me of the ability to plan, schedule, control, and order just about anything really gets under my skin.
After Meghan’s AVM surgery in February, we were told she was likely to need additional surgery in a few months. I did not sign her up for camp, WAITING. We had the MRI last Thursday. She spent 2 hours in the tube WAITING for them to take 5,000 images. I will call again tomorrow, but I will likely spend the week WAITING for the report, and the decision as the whether the next surgery is to happen now or later.
I signed her up for dance once a week, and swimming once a week, but we are WAITING on the MRI results to know if she will complete either of those classes.
Then, with the lack of a structured day she spends her time WAITING and hoping someone will come and swim with her. (That is when we are not WAITING at doctor’s appointments!) Her mother is WAITING for the lingering bleeding from the hysterectomy 7 weeks ago to stop before I head back into the pool.
I feel like these last few months have been full of WAITING. WAITING for surgery, WAITING to go home, WAITING for pathology, WAITING …
I have no control over any of this. I do believe GOD is in charge, and I am so comforted by that belief. It is my human frailty that keeps me searching for ownership and control where it is not mine to have.
I will WAIT. And I will do it as patiently as I can. Cowden’s Syndrome will be full of WAITING – forever it seems.
But, I will wait with a clean, organized house. I can not control this PTEN mutation, or the Cowden’s Syndrome that resulted, but I CAN certainly control the clean counters, and the dog fur… well, most of the time!
Towards the end of his book Dr. Seuss reminds me, and all of us…
“And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)
It’s going up to about 97 degrees today. And while I still can’t swim, thanks to some LINGERING hysterectomy healing… I had an “AHA!” moment as I got dressed today.
There are these adorable spaghetti strapped camisole tops. You know them, the ones that have the shelf bra that couldn’t hold a damn thing, so you keep wearing a bra under it, and then you wear another top over it to hide the straps, ending up hotter than you were to begin with? I see girls and women with them all the time. I have about 6 in my closet. All colors.
Today as I got dressed the thought occurred to me to try it without a bra. Just to see.
Well I’ll be damned. There is a benefit to fake size A boobs. I can hop, skip and jump. They don’t move. No bra required. No nipples makes for even less worry.
Summer Vacation began today. Yesterday was the last day of school for Meghan and I until early September.
I love this time of year, where I always say I get to have one full-time job (stay at home mom) instead of two. Well, maybe it’s two full-time jobs – medical manager of all things Cowden’s related, AND stay at home mom… But either way it is a break from the responsibilities of work, with all the benefits of still receiving a paycheck.
Meghan’s report card was beautiful. She makes us so proud. We talked all about the end of third grade and the beginning of fourth. We ordered a new backpack (Have to order early if you want that special GREEN!)
Then she asked what we would do today, to start off our first real vacation day. I don’t think she was surprised when I answered with, “A doctor’s appointment and an MRI.”
So this morning I got up at regular time. I watered the vegetables in our garden which is growing so beautifully this year. I made sure Meghan was dressed, and the dogs were crated. And we walked out the door at exactly the same time we caught the school bus every morning for 10 months.
We made it to NYC in time for my surgical follow-up. I have officially had all restrictions lifted, although the chronic bleeding continues! I was told not to worry, and it should be gone in another 4 weeks. Delightful.
Then, we walked a few blocks to the knee MRI. She was in the tube at 10:02, with only 0.25mg of xanax to take the edge off, and lasted in there until 12:05. unbelievable. They told me they had 5,000 images. I left with a CD in hand, and a promise there would be a report by Monday.
We got home in time for a quick lunch. I managed to get the CD of the MRI, combined with a cover letter, in an envelope to Dr. K, head of orthopedics at Children’s in Boston, and sent it off in the mail. Some time next week he will call to tell us if the date for surgery will be sooner… or later.
We made it to a friend’s pool for a few fun hours, to try to salvage the day. She went to bed exhausted, and soon I will too. I hope this isn’t an indicator of what summer holds, because I am striving for a serious amount of doctor free days. More time with the kid, the pool, and the tomato plants.
The cutie in this picture is my cousin Meghan. She was born in 1985 when I was just in the 6th grade. She was the first child I ever babysat for. She was my buddy.
She was diagnosed with Leukemia around her second birthday.
Remissions and relapses, bone marrow transplants and chemotherapy followed the next 4 years, but a cure was not to be.
She passed away in 1991 on my 18th birthday. She shaped my life in every way imaginable. I am a better person because I knew her. I developed perspective at an early age because I knew the pain of having loved, and lost someone so young.
My daughter Meghan was born in 2003. I asked my aunt and uncle for permission to use the name. They were pleased, but not surprised. Meghan was a huge part of my life, and I wanted my daughter to know her name was carefully chosen, and she was named for one of the strongest little people I ever knew.
My daughter knows all about “Angel Meghan,” and how she watches over us. She knows all about childhood cancer and its gold ribbons. She happily worked to raise money for a school project this year, for a “great” cause. She knows cancer took young Meghan’s life.
Gold ribbon (Photo credit: Wikipedia)
She also knows her Mom and her Grandma had cancer, and they are doing just fine. She knows the battles can be won, but they seem to be all around us.
What she doesn’t know, is where she fits in. She lives a life where at a young age, cancer and its risks have become a real part of her life.
She knows she fights every day, to get through her own life with a rare genetic disorder.
What I find interesting is she is seeking a symbol. She wants something to wear to show the world what she is contending with. She was able to express it to me, and while I was amazed, it made sense.
English: pink ribbon (Photo credit: Wikipedia)
My husband bought me a Pandora necklace with pink ribbons after the cancer diagnosis. I have a bracelet I wear. They give me strength, as silly as it may sound. A sense of focus. A reason to stay on top of things.
She needs something. And it isn’t easy to find. It’s not a blue ribbon, but a denim one representing genetic disorders. I think I will have something made. Anything to help her find her identity.
She is special. She is named for someone special. She is unique. She is smart. She is funny. She is friendly, and wise. She is a lot like my cousin who came years before her. She is tenacious and strong-willed. She is finding her identity. She is growing up. She knows Cowden’s Syndrome will never define her, but she wants to feel empowered. I can’t blame her.
English: Elephant in the room (Photo credit: Wikipedia)
Cowden’s Syndrome is the “Elephant in the room.” It is always there. It is never going away. Yet, most people – even immediate family- don’t want to discuss it because it makes them worried or uncomfortable. They would prefer to justify to themselves that your constant worry, and never-ending list of appointments are nothing more than paranoia and nonsense.
The “elephant” made its way into our house last fall. It’s not leaving. So we are working on respecting it, and treating it as the oversized house guest it is. Feed it too much and it will become more overpowering in its sheer volume. Ignore it and forget about it, and well… a hungry elephant can do some damage.
What brought me to all this metaphorical thinking today? It is likely to sound quite silly, but it was an earache.
Now, granted it was not an ordinary earache, the whole side of my head hurt, and still does. But the point is prior to my diagnosis, prior to my knowledge of Cowden’s Syndrome, it would have been “just an earache.”
Instead, I woke this morning in terrible pain. I was dizzy and uncomfortable. I immediately started remembering all the times I was dizzy or out of sorts this week. I have no fever, no cold, no signs of infection, no real reason for this pain. Yet, it was bad enough for me to drive to the Urgent Care center at 9 on a Saturday morning.
I waited for the doctor nervously. I recounted my symptoms to him. Here they know nothing of Cowden’s or chronic issues – they simply treat what they see. So, he looked in my ear and said, “It’s not red, there is no swelling, and no sign of infection.”
My heart sank.
That should have been very good news. He was sending me with a script for ear drops “just in case,” but not to worry – “there is no problem.”
No problem except, my ear feels like it is going to explode, the whole side of my head is sore, and all I can think about is “What if there is a tumor in there?”
This is not a rational response to an earache. I know it isn’t. I am also pretty sure there is no tumor anywhere near my ear. But, this is how Cowden’s Syndrome can change your perception of reality, heighten your anxiety, and keep your worries hopping.
If the doctor had told me I had an ear infection I would have been thrilled. Instead I have unexplained ear pain, dizziness, and worry.
I am sure it will get better in a few days. That’s what I keep telling myself. But what if it doesn’t?
beatingcowdens 