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.
“…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.)
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.
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.
The surgeon called. Two days earlier than I expected. My heart flipped a little when she said, “I have your pathology.”
“Everything looks great. It was all totally benign.”
Big Sigh… Thank you God. No more cancer. No more surprises.
For a moment there was doubt. Was I too rash? Should I have waited? Then, reality. They told me there would have to be a surgical uterine biopsy every three months. The scar tissue was already extensive. One ovary was twice the size of the other. There were cysts everywhere. General anesthesia is getting harder for my body each time. Who has time for surgery every three months? The worrying. The waiting for when it will hit. No… I was right. This was necessary.
Can I have a copy? I asked.
Well, aren’t you coming in next week?
Yep,but I need to see it. I need to hold it in my hands.
The beep of my fax confirmed receipt of two pages. Totally benign pathology.
Sigh.
Breast Cancer 85% lifetime risk. Got it, but got them off in time. I win.
Uterine cancer 28% lifetime risk (or something close.) I win.
Two less areas to screen compulsively. I really win.
Watch out Cowden’s. I am up 2 nothing. People say I am not that competitive, but when it’s important I play to win.
My husband says I need to be more confident about my body. He tells me that I am beautiful. I am lucky I know, because he really feels that way. He doesn’t understand my uncertainty at all.
I have always struggled with body image. I have always exercised, and eaten fairly well. There have been times of high weight, but my 5 foot 8 inch frame has always held it well. The last few months have been a bit of a roller coaster though.
Anxiety medication worked to keep the heart palpiations and the panic attacks under control, but it couldn’t give me back my appetite. I was down 30 pounds before the mastectomy. Now, 11 weeks later there are days when I forget. I forget the breast cancer that hid from the tests, the mastectomy that was supposed to be prophylactic, and the silicone that now lives under my numb skin. I forget – until I look. Then I see the huge scars, and the slightly uneven implants – not a surgeon’s error, but rather the error of 7 biopsies slowly removing the skin on one side over 14 years time and my refusal to endure tissue expanders and all their extra risks. I see… I feel…
Now I am home recovering from the complete hysterectomy. Another huge cancer risk removed from my list, but as I await the final pathology the reality that all my “girl” parts are gone – sometimes hits home, and it ouches a bit. What will instant menopause be like? I am not even 40, but I am sure I will know soon enough… Will my thyroid go totally nuts -again? Will I gain back every pound I lost? What will happen to my metabolism, my body?
And what about all these screenings still to do? There is already a harmatoma on my spleen, and a huge gallstone. That is before we have checked the skin, the kidneys, the colon.
I have to focus. I am not Cowden’s Syndrome. I am only a patient who suffers from it. I am still me. Neurotic, loving, caring – me. I will not let this disease define me, or my family. If I do that, it wins.
So maybe today I will look in the mirror. I will try to see the me that my husband sees. I will continue to recover, again. I will think about tomorrow when the sun will shine. I will emerge from this – better, stronger, more confident, and more beautiful. If I let it happen. I am not defined by the sum of my parts or by any disease. I am defined by my soul….
I am tired of the surgeries, and the random growths. I am sick and tired of the way you make yourself comfortable in my body in every place YOU see fit. I am tired of futile attempts to get rid of you. You are like the bad house guest! I am tired of your ability to strike fear in the core of my soul. I am tired of worrying about every lump and bump. I am tired of MRIs and ultrasounds. I am tired of waiting for results and worrying, and then testing all over again.
I gave you my breasts… cancer and all. And I am glad I did. The new ones are becoming more “normal” every day. Tomorrow you get my uterus and my ovaries. Cancer or not – you can keep those too. Just stop taunting me with your growths, and your risks. Stop whispering in my ear. It’s getting on my nerves.
You can’t beat me. You certainly won’t beat my baby. Not on my watch.
Back off. I am in no mood. Bite Me Cowden’s – I am TIRED!
My daughter gave me a button for Mother’s Day. She made it in school. It says “You are Special” on the front, and then on the back it says “You are 1 in 200,000.” Decorated with the obligatory hearts, she had made her point. Even in school, creating this “fun” assignment – she remembers. I can call it “unique,” “special,” and all sorts of motherly words. But she knows what it means. It means different.
She and I may be the same – in many ways, but not her friends. She can not ask her friends if their breasts hurt as they begin to develop at 8… because in reality she is different in this too. At 8 and a half she stands just shy of 4 foot 9. She weighs 73 pounds and wears a woman’s size 5.5 shoe. All sorts of wild things are happening to her body and I can only pray they are not related to the Cowden’s.
The endocrinologist called it precocious puberty, and was ready to write it off. I asked if she should start to develop close to when I did. She said girls tend to follow the mother. I told her then this was about 2 and a half years too early. She said it was ok. Then I reminded her about the Cowden’s. The tendency toward tumors. Can you reassure me that it is just normal development causing the breast pain I asked? “Well if she were any other child…”
But that’s just the point. She is not any other child. She is 1 in 200,000. With an early diagnosis that is both a blessing and a curse. She will go for blood tests on Saturday. If her blood shows that her hormones have begun puberty – then we should be ok. If they don’t – then we have big problems. A new internet friend whose daughter is now 22 was diagnosed with ovarian cancer at 8. Mom refused to accept the answer of precocious puberty without substantiating lab work. Good thing. It saved her little girl’s life. I have to wonder until the blood comes in, could there be a cancer lingering somewhere in her body like there was in this other girl, feeding the hormones – tricking the world? The thought makes me physically ill.
So after the blood tests there will be a breast sonogram, and a pelvic sonogram so the ovaries can be looked at. There will be a test to detect bone age. Maybe I am pushing too hard. Maybe I am pushing just hard enough. I won’t know, really ever. I just have to trust my instincts.
The irony is not lost on me – that on Wednesday I will go for a complete hysterectomy – to eliminate a suspicious polyp in my uterus and some ovarian cysts, and as soon as I get word on when I can drive – I will take my baby to check on all the things I will have already lost – Breasts, uterus, ovaries.
She asks a lot of questions, my very smart 8 year old. She asks how long before she will have to have the surgeries I have had. I want to say, maybe never. But I know that’s probably not realistic. So I keep reminding her that I am 30 years older than she… she has some time (I pray.)
Tomorrow I will go to work, and I will think about her all day. She will go to school and pretend to be just like every other third grader, as she deals with more intese grown up worries than any child should have. She doesn’t want to be different. But she is. And she’s mine. And she may very well be the best kid in the world.
I believe strongly in God. I am grateful that I am a religious person, because I think my faith is largely what will carry me through this journey. God has been good to me and I have been blessed beyond measure. The miracle of my breast cancer being removed is in and of itself only the most recent proof of His handiwork.
I have been raised Lutheran, and have grown up in one church my whole life. When we were married at first my husband came with me, but his attendance has waxed and waned dependent upon the pastor of the moment. Understandable. But my daughter was baptized at my church and for her first years I faithfully brought her each week to church and Sunday School.
Ironically enough our full time pastor who our family was very close to, left while I was pregnant withmy daughter. We went through several attempts before finding a fulltime minister in January of 2011. Ecstatic at first – to have a funny, friendly familiar face each week. Slowly I realized that I was not going to find the support I neeeded in him.
He made himself available for my daughter’s surgery – even accompanied us to the hospital for one. But, when I spoke of my upcoming mastectomy in late February, there was not a stitch of support. As a matter of fact weeks after my surgery – almost 2 weeks – I finally got a phone call from him. I was hurt by his apparent lack of concern. I went to him a week later to express my thoughts, to say I felt my needs were being ignored. An hour we spoke. I thought the conversation made a difference. And still 6 weeks passed with no phone call.
To say I am hurt hardly begins to express my thoughts. This pastor has had his struggles, disagreements with some members of my family, and it became apparent he was going to carry those feelings through to me.
For 38 years I have been an active part of this church, and now when I need it most I do not want to walk through the doors. I will find a place to worship. There will always be a place to worship a God who is so good to me. But I am hurt. To watch what should be a look of concern be such a cold and callous stare my way is unsettling to me. This man is supposed to be teaching me God’s way.
As I said before, “I don’t have a problem with God, (but today) it’s His fan club I can’t stand…”
beatingcowdens 