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.
“…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.)
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!
Elementary school kids can be really cute. Sometimes. I have been out more than I have been in these last few months, but since I have been at my school a long time I have a relationship with many of the kids and their families. So, when I walked back in on Monday I was accosted by small people, all of them waist high. Hugging my belly and telling me how much they missed me.
Um, thanks… and OUCH!
I smiled as I tried to slip away from them without offending anyone. They are so innocent. Not a single one thinks to ask why I was gone, they are just happy to see me.
I walk to my classroom, carrying my extra light bag that weighs 6 pounds. I know this because I was told to carry nothing over 10 pounds, so my overprotective – God I love him – husband brought down the scale we use to weigh our luggage, and checked on my bag.
He knows I like to drink a LOT of water during the day. He brought a case to my room, so I wouldn’t have to carry it. He is a pretty good guy.
I sit and look around. It has only been a few weeks again, but it looks strange. Different. I get the sense I am not too sure I belong.
Then I look at my schedule. Classes are coming. Real classes, expecting me to have lessons for them.
You mean I have to teach too? Wasn’t getting here enough?
I made it through – thankfully my days were shortened so I could deal with other issues.
I was OK with coming home from the hospital right after surgery, but did this doctor really know what she was doing sending me back to work in less than 3 weeks? Probably.
My surgery site barely hurts, and aside from some light bleeding, things are getting better. I have to keep behaving, and that is hard. Very unlike me.
It was probably good to get up and out of the house. To be around people. To be reminded that life isn’t just about me and life goes on while you are home recovering from surgery.
I am just so incredibly TIRED!!!!!!!!!!! The deep, bone crushing kind. I need my energy back.
Tomorrow there are no kids in school. Staff development for the teachers. I am starting to feel like I have a purpose again. Less wallowing, more working.
My clothes are all picked out. Let’s see what they make of my favorite breast cancer ‘survivor” T shirt. I may be exhausted, but I will be sure my sense of humor follows me to work and wherever else I go.
If we can’t laugh at ourselves, and our own lives, we are in a LOT of trouble.
“No, they’re not real (the real ones tried to kill me)”
the surgeon who two weeks ago did my hysterectomy did a wildly uncomfortable internal that brought back memories of the one when I was 41 weeks pregnant.
She then declared that I was, “healing well.”
I laughed and reminded her I am a “professional at recovering.” At least she has a sense of humor.
That is what we Cowden’s patients do, isn’t it? Surgery to surgery, procedure to procedure, happily enjoying the time in between. Knowing it will end. We recover. And we darn well better recover stronger and wiser and with our humor in tact – the alternatives are frightening.
She did tell me, because nothing should ever be quite “normal,” that she has never actually seen internal stitches come out so fast, and in pieces so large.
I told her in the hospital my body didn’t care for dissolvable stitches. She laughed at me then too. Come on, almost 20 surgeries later – I know my body.
So, it’s essential that I don’t lift anything over 10 pounds for at least another 3 weeks. I need to avoid bending any more than necessary. No swimming. No pushing. No pulling.
When I left the hospital they told me I could drive in 2 weeks. I lasted 6 days. I am an overachiever. I also asked them when the chauffeur was coming to drop off, pick up, and all that other stuff.
Now, since I know the stitches are loose too early I will try to be good. But really, when are they sending the housekeeper, preferably one who cooks allergy safe meals? My husband is working all day Saturday and Sunday. There is a bit of an echo, or occasionally an attitude when I ask for help.
So, my girl and I will make it through. Ticking the time away until her appointment June 14th. This time its my turn and she is awesome. Next time it will be her turn to be “healing well.”
Dear God, please remind me to ALWAYS be there for her, and support her, her whole life, no matter how tired or busy I may be. AMEN
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.
Lots of 
beatingcowdens 