Today after a few annoying things happened (like setting up Meghan’s appointment for Friday morning with the stupid surgeon, and fighting with a credit reporting agency over an old identity theft issue) I got to try on my new bathing suits.
Now, this (almost 39 year old) body, is in no condition to model, but I was so very excited I had to share.
Since the mastectomy I have had a lot of work getting used to my new boobs. They are smaller than the old ones, and that seems to be just as difficult to adjust to as if they had become bigger. It just changes everything – the way everything fits and feels.
I have also had to get used to no underwire – in anything. That has been an understandable, but difficult transition. So, I have pretty much transformed my closet into tops that worked for me. Lots of new T shirts, a couple of dress shirts that still need a tuck at the shoulder to tighten them up by the boobs. But all in all – its going ok.
When I first put on last years bathing suits I did cry a little. I had to immediately put all but 1 (which was salvageable, but not great) up in the attic. Not only did the boobs just not work in those suits, the stress of the last few months has taken off some pounds. So they were a mess. I ordered 1 suit a few weeks ago. My husband made me take it off because he said it made my boobs look fake. (LOL… newsflash honey… ) But I understood.
Got these in the mail today and got the seal of approval on both. I have some nerve showing them here… but I want to know what you think.
So I waited, again, all day for the phone call about the knee. I put in my reminder call at 10 this morning and again at 4pm. I was told they would look it over after their patients.
The call came at 5:20. It was from the surgeon’s PA who does know Meghan and has sat in on her cases from the start. The doctor doesn’t make the phone calls- ever. I must admit for some reason I did not tell the PA that I was holding a copy of the report as she spoke to me. I really wanted to hear what she had to say.
Actually what I REALLY wanted, was to hear, “You have a stable AVM.” Let’s look at it again in 6 months. I would have been jumping up and down. I am beginning to like ” 6 months.”
That is what I was ready for – but this is what I got…
“We reviewed your daughter’s MRI and it is normal.”
NORMAL?
“Yes it is a normal MRI.”
DO YOU MEAN THERE IS AN AVM THERE THAT JUST ISN’T GROWING?
“No we don’t see an AVM.”
THEY TOOK 5000 IMAGES (and that this point I wanted to shout that the damned report cites a 2.8 x0.7cm mass, but I didn’t) ARE YOU SURE YOU LOOKED AT ALL OF THEM?
“Yes, there is no evidence of an AVM. I know you wanted Dr. K in Boston to review these images..”
NO, I NEVER EVEN KNEW THERE WAS A DR. K IN BOSTON UNTIL YOU TOLD ME TO CONSULT HIM! SHOULD HE REVIEW THE IMAGES?
“That is up to you.”
WELL WHAT ABOUT THE FACT THAT THERE IS A PALPABLE MASS ON THE INSIDE OF HER RIGHT KNEE ABOUT THE SIZE OF A PEANUT?
“Oh, you should bring her in so we could look at that.”
IT HAS ALWAYS BEEN THERE!!
“Bring her in so we could look at it.”
(In my own mind…you have a CD ROM with 5,000 images. You have a report that says there is a mass, but yet somehow you pointing to it and saying, Yep that’s a mass is going to make this better?)
I walked for about 2 hours after this call. It took that long to shift my emotions from irate to angry.
Once again with my back against a wall, I will call tomorrow for an appointment.
Another wasted day in NYC with its pricey parking garages, and doctors that are supposed to really give a crap. Another day of summer burned for nothing.
Starting to feel like I am in the Twilight Zone.
Thanks PTEN. Thanks Cowden’s Syndrome. I like you about as much as Dr. R. – and right now that isn’t saying much!
Tuesday when the doctor didn’t call me with the MRI results, I was really irritated. Annoyed enough that I called the imaging center where the test was done and asked them for a copy of the report. While regulations prevent them from faxing it, they did put it in the mail. I received it yesterday, but since we were having such a nice, “normal” day, I decided to wait and open it today.
Now, if you are frequently ill, or if you have a child who is ill and frequently tested, you become able to decode these reports to some extent. It’s not perfect, nor am I fluent, but I can manage to get the idea. (Kind of like after 12 years of being married to a Puerto Rican man, even as a woman of Irish, Norwegian, and Dutch descent, I can kind of “get it” when they talk in Spanish.)
So I took the report down to my computer table, and the first thing I did was compare it to the last one. (Which was easily found in the 4 inch binder of her medical records, in the blue tab marked “images” – but we can talk about my OCD another day.)
Now the truth is I have no business trying to interpret this without the aid of a doctor, but for that – I blame the doctor and his insensitive move to ignore me before his long weekend. So, I will give it a go.
The first thing I notice is that the reports are similar to each other. Since they took place 6 months apart I first rationalize this must be a good thing. There was not any significant growth of the AVM over 6 months. Then I realize she had surgery in February to shrink the AVM. There is NO significant change at all in the size of the AVM.
Under the section marked “findings” it reads “Deep into the medial retinaculum is a 2.8 x0.7 cm… mass” Now I know that’s the AVM, but I had to take out a tape measure to picture the size. Then I figured out the other words were obviously location, so I went searching for some pictures. I took this one-off the www.aafp.org website.
I took a long hard look at this picture and then a long hard look at my child’s knee. I think it hit me for the first time when I did that.
I mean, I have always known her to be in pain, a pain I belive to be very real and very intense. But she has often said to doctors, and to me, that her knee is “swollen.” That finding is always discounted by doctors reading these reports because it says “no joint effusion,” which translates into no swelling of the joint.
But, anyone who has had a splinter knows the irritating feeling of having something in your skin, and the desire to remove it.
So, when I think about the doctor, incidentally the same one who didn’t call me Tuesday, telling me for several years that “AVMs don’t cause pain,” I must say I have an overwhelming desire to cause HIM pain. Maybe AVMs in and of themselves, in certain locations, do not cause pain, but I can not imagine that a mass, almost 3cm by 1 cm imbedded “deep” in the medial retinaculum would NOT cause pain. I can also understand why the feeling of a fairly large pebble formed by blood, capillaries and veins, and shoved into one of your knee ligaments might make you use the word “swollen” in error when you are 8. It has to feel AWFULLY strange to have something IN there.
The question is – what do you do about it? When I ask Meghan to straighten out her right knee, she can’t. She can’t “sit like a pretzel” in school, and she can’t put her leg straight out in front of her. Her range of motion is clearly restricted.
Lots of arteries mentioned here, but the femoral is one of the large ones, that branches out. When they did her surgeries, three of the times they entered through the left femoral artery, and pushed the camera over and down to the right knee.
For them to say now that there are feeders from the distal superficial femoral artery, it seems that puts them right at the spot of the AVM.
So, now what?
I guess I am no better off than I was if I didn’t have the report. Aside from feeling a bit empowered, I have NO idea if this means she needs surgery – or not. I have no idea if it is OK to let this mass stay there, even though she can’t run, or jump, or do lots of things she wants. Maybe it is OK, and we will just watch it – every 6 months like the thyroid. Maybe it has to come out.
I guess I will find out tomorrow.
But, for Meghan it doesn’t really change her reality. She will have pain and restrictions with or without the surgery. This thing can easily come back – even if they get it all. So for now every single step she takes is internally a painful reminder to her, of what she has been given to endure.
It is amazing to me how infrequently she complains – about anything. She is my hero.
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.)
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.
Lots of 
beatingcowdens 