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
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.
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.
If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.
We don’t “look” sick. As a matter of fact we look alike. A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome. To look at us, you would see a vibrant mother and daughter duo – 8 and 38.
We have a lot in common.
When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.” When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?” Actually she is 8, and she would much rather walk.
You can’t see the AVM in her knee. The one that has cost her 4 surgeries with an expert people travel the world to see. You can’t know by looking at her that in February he told us he could not “fix” it. That he was placing us under the care of another surgeon hours away. You can’t by looking at her, see the constant swelling. You can not see the pain.
That is because she is ALWAYS smiling. She can work a room, and make everyone feel welcome and important. She is a star student, reading almost 2 years above grade level. She is friendly, and funny. (She had to get something from her DAD.) She is confident enough to dance, and participate in storytelling contests. (Not sure exactly WHO that comes from.)
She takes medicine for pain, medicine for anxiety, medicine for viruses that plague her, medicine for allergies, medicine for her stomach – to ease digestion. She takes countless diet and nutritional supplements. She follows a Gluten Free, Casein Free, Soy Free diet without a minute’s hesitation. She is polite, and extremely well behaved.
I am so proud of her. Last week when she was having one scan after another they called her a “model patient.” Now I must confess when she was a baby and I was wondering what she would be good at, being a model patient wasn’t on my list of aspirations. But since she is good at so many things, the fact that she handles her appointments in stride makes me proud, and confident that she will have the ability to stay out in front of this wretched disease.
“You don’t look sick.”
But yet, we are. She had surgery in February for that pesky AVM. I had a diagnosis of breast cancer in March, and a complete hysterectomy in May. Next month we will take her to have the precancerous thyroid nodules reevaluated, and to have another scan on the knee to pin down when the next surgery will be. Not if, but when.
With all of these ‘invisible” illnesses come worry. It is not uncommon for me to talk to my 8 year old about if she will need a mastectomy, even before her own breasts have developed. She asks me if she will need a hysterectomy. A wild question, when the concept of what she will be when she grows up hasn’t even been ironed out. But she is astute. She knows she will likely walk my road. She watches. She thinks. She asks.
So no, she doesn’t look sick. Neither of us do, but some days reality is tougher to face than others. Some days that happy face is a little harder to find.
So, when she woke up today after PT Thursday, kickboxing, and swimming lessons on Friday, she was sore. Really sore. The celebrex wasn’t helping. She couldn’t bend her knee. I rubbed and stretched. She was annoyed.
She is allowed to be annoyed, here in this house. She is allowed to be discouraged and disgusted. I have been all of those things this week, and I know its important to let them out. I am recovering from my second surgery in less than three months. I am tired. I am annoyed, and aside from a few treasured folks who keep checking in, I am really really lonely. This surgery seems to have pushed a lot of my support network over the edge. They are a bit tired I guess. It’s hard to be there for someone when your own life still keeps going, I know. Especially when they don’t look sick.
So, today she had a turn. She was discouraged about the prospect of more surgery, and disgusted that the knee seems to remain swollen. She mourned her dream of running track. She cried about the permanence of this disease. She told me she wished she could get sick with something “normal” like a broken arm. You know, something that can be “fixed.” She sobbed out her frustration with doctors, surgeries, cancer, and the worries connected with each. She wants to be more like her friends. More carefree.
My heart ached as I held her. She is a tough cookie, but we are all entitled to lose it. I cried because I felt sad about giving this to her. I held her tightly and told her how much I love her. We went through a few tissues, and some long talks. Lots of things I can tell her I understand, and then some things I can’t. I told her she can cry. She can be mad. She can worry. She just can NEVER let it win. She can NEVER let it define who she is. I will always be sorry she had to inherit this, but I will NEVER be sorry I have her. She is my heart and soul. She is my sunshine. She saved my life.
“You don’t look sick.”
She brushed it off after a few minutes. Back to the Ipad, and back to taking care of me. No one outside of my husband and I will ever see her like that. Her carefully guarded emotions will only let loose where she feels safe. No one else will ever know her anguish, her pain, her heartache, her worry. No one, not even our closest family members would ever guess.
I think about all those people, and their quizzical stares. I know I can’t be too angry. They don’t know any better.
“You don’t look sick.”
She and I are a lot alike, in so many ways. And I wouldn’t change a thing. We are going to be just fine.
I bet I can finish this post before they take me off hold. I have been on this call for 28 minutes so far. I have been transferred 4 times. Finally I cried. That got me a sympathetic male supervisor. Sympathetic in that he has left me on hold for 20 of those minutes, but has checked in on me 4 times.
How do I do this when I am at work? Fortunately I haven’t been at work much, but I understand how people lose their jobs. I am a teacher. I can’t spend a period with my cell to my ear waiting to be off hold while I teach. It just doesn’t work like that.
The breast ultrasound. No one wants to do it. I get it. She is 8. It’s odd. Get over it and do your damned job! No one wants to be responsible. Guess what idiots? We have to check. And if you know what a normal breast looks like – this shouldn’t be so tough.
Anyone care that I don’t want to do this either? The reality of it makes me ill. Anyone care that I am only 6 days out of major surgery, my anxiety is at a peak, and haven’t even told her we are going yet? Anyone else give a shit that this isn’t just a weird scheduling inconvenience? This is Cowden’s Syndrome. This is our life.
The man (the call is at more than 35 minutes now) just came back to tell me he hasn’t forgotten me, but this is a lot more than I think. REALLY? He is lucky I don’t take the time to tell him what I think. Maybe he isn’t so nice after all.
Her bloodwork was Saturday – the bloodowork to check the hormone levels. Wednesday I will take her for a pelvic sonogram. They are still trying to figure out who will do the breast sonogram. Everyone is afraid. No one knows what they are looking for. Major NYC hospital, and everyone is afraid. It doesn’t instill confidence. When you have a rare disease, no one knows quite what to make of the realities that we face. But this is my girl and I will not put my head in the sand. Someone will do it.
She danced this weekend. It was her second recital. She will not dance on Broadway, but to her proud parents her smile was worth a million bucks. Her ability to move – courtesy of PT and Celebrex, and her award winning smile. For a few minutes on that stage, she was just like everyone else. Sometimes its nice to be “normal.”
In a few minutes I will call to schedule the next MRI/MRA of the knee to check on the “leak” from the femoral artery causing her AVM. We will do that the last week in June, just in case she needs more surgery, there will be time in July.
Of course all that depends on the hope that our June 14th appointment to check on the thyroid nodules is uneventful. “They are precancerous. They will turn. We just don’t know when…” At some point she will lose her thyroid to cancer. And we can only wait.
Sometimes its good to be home. To recover from surgery. To make some phone calls. Sometimes it just lets the worry fester. I can accept that I have this damn disease… but why did it have to mess with my girl? As a new internet friend eloquently said – eff you Cowden’s!
beatingcowdens 