So, what do these three have in common? Give up? I bet a few of my Cowden’s Syndrome friends could guess…
They all can regenerate tissue that has been removed!
Except the first two tend to do it in a much more productive way.
I had heard tell that lymphoid tissue (especially the thyroid and tonsils) could regrow – especially in Cowden’s Syndrome patients. (It makes sense in a way, PTEN is a tumor suppressor gene that is broken, so cellular overgrowth is common.) But, I chose to ignore it.
Sometimes ignoring things for awhile allows you to deal with other things.
When Meghan had her tonsils and adenoids COMPLETELY removed in May of 2008 she was in the middle of a 12 week strep infection. Three months of antibiotics, and they were still pulling “heavy positive” cultures every 2 weeks. By the time they were to be taken out she was admitted for several days of antibiotics prior for fear of rheumatic fever. She was a chronic, almost constant strep sufferer.
Then for about 2 years – nothing. No strep.
I don’t remember the first time it came back. It was about 2 years ago. A full year before I ever heard of a PTEN mutation, or had any idea what Cowden’s Syndrome had in store for us. I thought it was odd, the strep coming back without the tonsils, but I chalked it up to a rotten immune system.
Slowly the cases have become more frequent. It is almost constant. We don’t leave the pediatrician without a throat culture and a script for an antibiotic. Not all the cultures come back positive, but you can tell. The food avoidance, the tough time swallowing, the swollen glands, the puss in the throat. You just know.
Lately it has been about once every 3 weeks. Way too many antibiotics to be good for anyone, but strep is way to serious to ignore. So, we keep treating, and wondering.
Today we had a routine visit to the oncologist. I mentioned the strep. She looked in the throat. She said, “Have you ever considered having her tonsils out?”
This cartoon is on the front of Meghan’s 4 inch medical binder. We have sometimes decided whether or not to keep a doctor by their reaction to this TRUTH!
It is late. I should be asleep. Morning comes fast and it is already after midnight. I just can’t seem to find a way to unwind.
I just had a long chat with a ‘new” friend. That helped a lot. But still here I am, trying to get these racing thoughts out of my head before I rest.
I saw a new oncologist today. The geneticist insisted I have one to follow me and one for Meghan. Except I was having a hard time finding one who didn’t think Cowden’s Syndrome was contagious. (Ok, perhaps I exaggerate, but they weren’t anxious to see me.)
So the geneticist sent out an Email on Tuesday to some of his friends. By Friday he had a name for me, (which means the genetecist is a KEEPER!) of a doctor IN network, and I met her today.
She is lovely. Of course, by already having the double mastectomy and the hysterectomy, I have made her job much easier. Now she gets to push me to the fun stuff. Next up- colonoscopy, and kidney MRI. So tomorrow I will call to get the GI appointment, while they work out the authorization for the MRI.
And all the while I will mourn a bit for the summer that wasn’t meant to be. This was more, a necessary doctor “catch up period.” I think by the end of August we will have at least 25 appointments done between us. And those are just the ones scheduled right now.
So, just when I start to get whiny and cranky about wanting some alone time to shop, or some fun time to swim, I remember. Were it not for the work of the angel on my shoulder, that pushed my “prohylactic blilateral mastectomy” in March, I would have likely been spending this summer prepping for cancer treatment.
So, we still get our trip to Disney, and there is always NEXT summer…
I spent the last hour preparing for Meghan’s oncologist visit on Friday. We haven’t seen this doctor for months. There have been a few things going on. So, I faxed her 32 pages of what we have been up to. She wanted to review it before the appointment.
I posted the cartoon because I had her binder out while I was preparing the fax. I laugh every time I read it because even after all these years it is still true. Even with our diagnosis of the PTEN mutation, and Cowden’s Syndrome, even with the precancerous thyroid nodules in Meghan, and her early puberty, she still has pain. Every day. And not one of these doctors that we take her to can tell us why.
I thank GOD every day for her stamina, and her spirit and her spunk. She is my love, my reality check, my perspective, my reason for being. I feel displaced right now, from my church, my comfort zone – but not from God. Even in the midst of all the chaos and uncertainty, I have a husband and a daughter that are beyond compare. God has us in the palm of His hand. We are blessed. And it WILL be OK!
This year I am obsessed… well with quite a few things, but one of them is not (directly) medical.
This year I am focused on a high quality, everyone looks their best, everyone is smiling, family photo.
We are a family of three. Immediate family that is. (Not including our furry friends Allie, and Lucky.)
Our extended family includes his parents, two sisters, a brother-in-law, and three nephews. On my side, there are my grandparents, (Mom’s parents, my step-dad’s Mom, and my father’s mom) as well as my mom and dad, my father, my two sisters, a brother-in-law and a half-brother, and two nephews. That list doesn’t begin to address aunts, uncles and cousins galore on both sides. Yes, they are all family, but reality will never put them all in one place at the same time, and there are probably some blessings to that. While I love them all dearly, I often say you shouldn’t mix drinks, or extended family!
We have been fortunate enough that we have been able to travel to Walt Disney World in Florida for the past 4 summers. We will be making it a 5th this year. We save and budget all of our “fun” money for a Disney vacation because for their extremely high pricing, we get “allergy safe” meals wherever we eat, and unlimited access for Meghan’s push chair, which she often needs when we travel more than about a half mile. It is the best week of the year for all of us.
It is usually the week of Meghan’s birthday. It is doctor free, no needles, just be “normal” week. We take LOTS of pictures. Usually it is of Meghan alone, or of one of us with Meghan. They are great photos and I treasure them. The few photos we have gotten of all of us in Disney usually have us in sweats, and sneakers – SWEATING. This year we are going to go to the photo studio, and I don’t care how much it costs. Meghan and I have dresses picked out, and matching sandals too. (We just need to pick out something for Daddy who after deciding “stress eating” isn’t the way to go, is down over 20 pounds!)
There are so many reasons why I am focused on this photo. It is FUN to focus on something FUN.
I have been smacked in the face with the reality of the frailty of life. In March I was given a “second chance” as I was told the breast cancer that was “sneaking up on me,” unbeknownst to any doctor – was gone. Gone after a “prophylactic bilateral mastectomy.” Gone before it had a chance to wreak havoc on my life. Gone. But I will not forget the words of my surgeon, “If you had waited until July to do the surgery you would have likely been in a fight for your life.” Instead, I will go to Disney World.
Not lost on me is the reality that 15 years ago next month my Mother finished up treatment for bilateral breast cancer. She is strong, a survivor, still here, enriching our lives.
Not lost on me is the cancer scare AGAIN in May, as they worried about a malignancy in my uterus, before performing a hysterectomy.
I am vividly aware every moment that the thyroid specialist who monitors Meghan’s “precancerous” thyroid nodules, took back his invitation to come back in a year, and said, “we better see you in 6 months. One nodule is starting to dominate.”
I am painfully aware every moment that after one of the strongest, and longest battles I have ever witnessed, we lost GGPa in June to cancer.
My stomach, and my heart hurt for the victims of the senseless attack in Colorado this week. Families out to see a movie – life ended so tragically.
I love to look at pictures. In an age when people have stopped printing them, I have shelves FULL of albums. I love reliving memories, and smiling at al the good times. The albums remind me, that no matter how tough things seem, there ARE LOTS of good times.
Cowden’s Syndrome, PTEN mutation, cancer, NOTHING can take away the memories or the good times. So since 2012 has been quite the year, we will take a “fancy” family photo. One that will hang somewhere in our house and remind us that we can endure the tough times. One that will remind us to hug each other tightly, and to kiss each other when we leave, and to never stay angry over nonsense.
One that will remind us that we are defined by our spirits, and not by the sum of our parts.
It just sounds better than 6 months. It feels better too.
“Six months” says, we are still a bit concerned.
A year says, “You got this. I’ll just check back and make sure it’s all good.”
One year from now I will visit the plastic surgeon. She will check on my fake boobs, and make sure they are still doing exactly what they are supposed to do. (Which near as I can figure is stay still.)
Next month I visit the breast surgeon. Hoping to get “one year” from her too.
Eventually my life and Meghan’s will be in some type of maintenance cycle. We still have some time before we get there, and there will always be doctor’s appointments – but for now it’s a big win.
I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things. It could be modified to hold the cell phone that is constantly in my hand! I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier. I LOVED having my hands free again. I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone. I waited forever for the vascular surgeon to call. Now Dr. K from Boston called Saturday, and we still haven’t connected.
Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.
Today was a banner day.
It was the FIRST time we have been to the beach since before her first birthday.
This child was so sensory sensitive that we were both deeply traumatized by the first trip. It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!
We only stayed a few hours.
Long enough to get into the sand and build a castle. Long enough to find a few shells. Long enough to jump a few waves. Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.”
Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring.
But then what?
Will Dr. K have a single answer?
Will he want us to drive 5 hours just so he can say, “I don’t know?”
Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.
It was a friendly visit, catching up on all we have done. I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago. It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.
He asked a lot of questions again. He looked closely at Meghan, especially her legs. He pointed out again the 1/2 cm discrepancy. He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!)
He listened to my concerns about her avoidance of activities. He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint. Not JRA, but degenerative arthritis. He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives.
He will nose around, and see if he can get a closer orthopedist to take a look. Then he will look for an oncologist for me. In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe. Just a baseline.
3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting. Always waiting, and wondering, and worrying. What next? Can we fix it? Wait… nothing new please! We haven’t fixed the last thing yet… and so on and so on.
Tomorrow we will go back to the pediatrician to recheck for the recurrent strep. Then, a much anticipated play date for Meghan.
Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan.
All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad. Good thing. I think it’s a case of life imitating amusement park here.
Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!
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.
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.
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.
![Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]](https://i0.wp.com/topics.info.com/image/400x200/can-animals-regenerate-parts-of-their-bodies.jpg)
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