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?
As I was receiving the news of my grandfather’s passing, I mean within moments, my cell phone rang.
It was the endocrinologist we had seen the Thursday prior about the thyroid. It was hard to wrap my head around the conversation at first, but I was struck by the reality that this is it. This is how life will always be. Life won’t stop for the doctor’s appointments and test results, and the appointments won’t stop for life. So somehow, we need to find a way for them to get along, and exist – simultaneously.
The thyroid sonogram had been done on the 14th. When we left him that day he was comfortable waiting a year for the ultrasound, and just seeing her in 6 months. He told me he would call me after he compared her November 2011 sonogram CD to the new one.
So I stopped in the hallway at my school. Tears were still streaming down my face as I composed myself enough to talk to the doctor.
He reviewed the older images and compared them. There are a lot more nodules, he didn’t even give me a number, and most of them are very small. However, there is one a bit bigger than all the others. He would like to keep an eye on that one.
Instead of a sonogram in a year, we got bumped back to 6 months. Doctors seem to like to treat us, patients with Cowden’s Syndrome, in 6 month increments. Now if I can just figure out a way to synchronize them so we are not ALWAYS scanning something…
So, the last time we were there they told us to prepare. She will have thyroid cancer I was told. Until then, they will just watch. December 27th it is then.
Even as I continue to wonder if all these thyroid nodules couldn’t be provoking this puberty, setting off a way too early growth cycle, I knew I wasn’t going to get an answer. At least not today.
So, I closed the phone and dried my eyes. One day the thyroid will turn, but it’s not today. Not now. At least we can have the week to bury Grandpa in peace.
Kids know. They have instincts adults have lost. Never underestimate the power of a kid. (This was written a few weeks ago, and I am just now getting to adding it here.)
I know that my daughter is a smart girl. I know that she is in so many ways wise beyond her years, but I never cease to be amazed by her instincts, and her ability to read people – especially her family.
She knows that we share a genetic link and that we both have the same – Cowden’s Syndrome. She knows that we tend to grow things. She knows about her own AVMs, and that she has some thyroid “bumps” we are watching.
I am guarded but honest when I speak to her. It is important when you have a child who is sick so often that they trust you. I learned there is no way to lie to her and keep her trust. So, I answer the questions she asks, using as few words as possible, and I always stay honest.
That is why I was floored a few nights ago. She has been having a hard time with her knee again. In the middle of a not so common, depressive episode she complained for a while about her knee, and the permanence of the pain and swelling. She was frustrated, and she is allowed – so I held her as she cried.
What floored me was what happened next. She grabbed onto my shoulders and looked me in the eye. She said “I know…” I said, “What do you know?” She said, “Cowden’s makes it more likely for us to get cancer. You had cancer once and you were ok. Are you going to have it again? Is that why you had your other surgery (the hysterectomy?)”
I swallowed hard, intent to stay focused. “I don’t know,” I told her. “I don’t think so. We just took this stuff out to be safe.”
She looked at me with those tired eyes. She looked at me for a long time. She held me tightly and said, “I don’t like leaving you ever – even for school.”
Holding her as tightly as I could, I said, “I know…”
It just doesn’t stop. There are days we would like it to go slower, and days we would like it to go MUCH faster.
There are days we would like to relive, and those we would gladly forget. But really, we have no control at all.
60 seconds in a minute
60 minutes in an hour
24 hours in a day
7 days in a week
52 weeks in a year
I find there are occasions when I would like time to hurry up. When I am waiting for my daughter to get out of surgery is the best example. Time can’t go fast enough. When I am waiting on pathology results, for any of us – it always seems like forever.
Hourglass (PSF) (Photo credit: Wikipedia)
When we were first diagnosed with Cowden’s Syndrome in the fall, the first thing they did was send my daughter for a thyroid sonogram. Of course it revealed 4 large nodules which we subsequently had biopsied at a hospital no better than a butcher shop.
As we sought out another opinion, and moved the slides to a much more reputable facility, an appointment in January found us with a pediatric endocrinologist who actually had some experience with Cowden’s. He told us he had reviewed the slides and noted precancerous cells. He essentially told us our daughter would have thyroid cancer at some point, he just could not say when. So, he told us to return in 6 months, and we would check again.
I remember at the time thinking 6 months was an eternity. I wanted it to be faster. I wanted reassurance that she was well. He was insistent that 6 months was appropriate.
So we made the appointment for June 14th. Now June 14th is tomorrow. And I think I may need a little more time before I am ready. Things have changed. Now we have an 8 year old with a developing body, and labs that don’t match. Now the reality that there could be a malignancy on her thyroid, actually helping cause some of these problems is making me want to vomit.
If we could slow things down… just a little?
15 hours from now we will be sitting for the thyroid sonogram, and 17 hours from now we will be discussing the results with the doctor.
I am trying to prepare myself for whatever he has to say. I have to hope for answers, for her sake.
Even if they aren’t the ones I want. Too many open questions. Too much time had passed.
Some days I forget. I really do. Some days the thought that I had my boobs cut off and replaced with these round silicone implants doesn’t even cross my mind. Then, there are other days.
This morning I took a shower. Not a rare occurence, but maybe it was rare that I wasn’t late. That I had time to really look at things. So I looked in the mirror. First, at the small hysterectomyscars that are healing quite nicely. (While I still have ISSUES with whatever is provoking the NEVER – ENDING bleeding inside, the outside scars look great.)
Then, I looked up. Staring me right in the face were these perfectly round circles where my boobs used to be.
There is a scar across each one. No nipple on ether. There is also the most bizarre indentation under my arm on both sides. I looked at it for a while. Then I realized it was my ribs. It just looks weird. And wrong. There should be some kind of tissue there hiding my ribs. I am sure of it.
I took a few deep breaths. I reminded myself that I would have the luxury of drying my large head of curly hair – because the cancer that was hiding in the left boob was gone. For good. No treatments. No worry. Just have to get used to the new landscape.
I put on my bra. One of the new ones with the A cup. I tightened the straps. I wiggled this way and that. Still there were these huge gaps. Even the bra people don’t figure on what you are supposed to do to cover ribs where they shouldn’t be.
I did manage to get it together, and get out the door to work. I am sure no one noticed any of my insecurities as I went about my day, but they were there. Nagging me.
Since I am somewhat of a masochist, I decided today would be the day to try on the bathing suits. There were 6 in all in my drawer. Four of them literally fell off of me. One was full of “extra fabric” as my husband put it, and the other one – well that one wasn’t so bad at all. A relief I guess that when I get the OK from the hysterectomy surgeon, at least I have a suit to put on.
I went tonight to the mastectomy section of an online retailer to buy myself a real suit. I was so confused. Unsure of my own size, and which will cover enough, I settled on a (way too expensive for my taste) tankini. It should arrive in a few days. Maybe it will even fit.
Summer is coming, fast and furious. Whether I like it or not, the new body is making its debut.
Look out world – with a slightly flatter belly, and some perky new boobs – here comes the new me.
At least I don’t have to worry about my nipples sticking out at all the wrong times!
Wow… I though I was going to get away with this. Then, almost 4 weeks later, I am sitting here and there is this heat, creeping up from my toes. I swear my skin was crawling with fire. Up the legs and the back. As I went grabbing for something to get the hair off my neck and wiped the beads of sweat frantically forming on my brow.
Inhaling a bottle of water, I can’t help but hope that my body doesn’t make this a habit.
Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.
We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.
It can be an all-consuming job.
When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.
There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.
There is also the battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.
This is a war my daughter and I are fighting together. Each on our own road, but we are battling the same enemy.
Like in every war it is inevitable that there is collateral damage.
Haughton play park 20070602 (Photo credit: Wikipedia)
Today was the 3rd grade play at my daughter’s school. It was also “Family Fun Day,” where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.
It was about 82 and sunny here today. The weather hasn’t been this perfect in weeks.
And I, I was at work. My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.
How is this all connected? Very easy.
If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.
Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.
I got permission to go in an hour late. I got in to see the dress rehearsal of the show. I stole 10 minutes on my lunch to drive by the park. And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.
She is such a good girl. “Don’t worry Mommy, I understand. I am so glad you are feeling better, and I know you need to get back to work. Maybe next year we will all have less surgeries, and then you can come?”
Collateral damage – my girl having to grow up so damned fast.
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