Tag: cowden

Forgive my whining…

Published on by beatingcowdens4 Comments

… but no one else seems to want to listen.

I am tired.  Not just the physical tired, but the mental and emotional tired too.

My body is exhausted.  Tomorrow I head back to work.  Two major surgeries in 3 months.  I think my incisions might be healed, but I am just so wiped out.

This recovery from my hysterectomy has been nothing short of obnoxious.  The bleeding seems to have subsided, and the pain is gone.  The restrictions are still in place, but the hardest part has been feeling so damn alone.

Days go by, the phone doesn’t ring.  Not a text message to check in.  Not expecting fanfare here, but a little love from my friends and family would be nice.  Now there are a few.  There are always a few… but even with them, I am lonely.

That loneliness hasn’t helped me feel better.  No.  Not one bit.  Combine that with the fact that my dear husband, who truly tries his best, is in school 2 nights a week, and has worked more overtime in the last 2 weeks than he has since December.  He can’t say no.  Not in this economy.  And he so rarely gets called.  Timing sucks.

So it has been me, and my girl.  She is awesome.  Yesterday when we realized Daddy definitely wouldn’t be home, and we were dangerously low on food, she came to the grocery store with me.  She didn’t let me lift a thing.  She packed the cart, packed the bags, and carried them right into the house.  She is awesome.  But, she is tired too.  She is always willing to take care of me.  But she is 8.  A friend would make for a much better weekend.

So, today I took her with me to a meeting at my church.  Remember a few weeks ago when I said, “I don’t have a problem with God…it’s His fan club…?”  Well that is getting more true by the day.  I can actually say I was disgusted by my minister, and a large portion of my church.  The church where I have grown up for the last 38 years.  Things are tenuous between the pastor and myself, I would say largely due to his LACK of support, but he did not even greet my daughter or myself at the meeting.  She is so astute.  I am trying to channel her energy away from anger, but she feels the hurt in me.

I know there is a plan here.  One larger than me, larger than any of us.  I do believe strongly in God and His guiding hand.  I have been blessed with several miracles, and witnessed others.  I know He is here, but I do not often understand His  plan. 

So, in the midst of all the chaos, the drama, and the confusion, I seek solace in music.  I remind myself that these people who are so painfully absent – don’t mean to be hurtful.  Those full of drama are lacking the bigger picture.  I never lose touch with the reality that I am not the only life struggling.  There are so many others, so much worse off.  But for now, for right this minute, it doesn’t change the fact that I am sad, scared, and lonely.  No one really wants to hear it, because they can’t fix it.  But its true.

I have always believed everyone does the best they can with what they have where they are.  So, even amidst my sadness, I do not have anger.  People have their reasons. 

Tomorrow I will go back to work.  I will smile brightly as if I was without a care in the world.  Even if my bones ache from exhaustion, and my heart aches to share this pain with those I love, I will smile.  I will get through the days, one at a time.  And I will always have a song in my heart to help me.

http://www.youtube.com/watch?v=skQQRhhZZQg

“He Said”
(feat. Chris August)

So your life feels like it don’t make sense
And you think to yourself, ‘I’m a good person’
So why do these things keep happening?
Why you gotta deal with them?You may be knocked down now
but don’t forget what He said, He saidI won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He saidWho you are ain’t what your going through
So don’t let it get the best of you
Cause God knows everything you need,
so you ain’t gotta worryYou may be knocked down now
but just believe what He said, He said

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said

Don’t fear when you go through the fire
Hang on when it’s down to the wire
Stand tall and remember what He said

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break…

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said

Healing well…

Published on by beatingcowdensLeave a comment

After she stopped laughing at my Tshirt,

“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

Cloudy With a Chance of… Puberty?

Published on by beatingcowdens1 Comment

Cloudy with a Chance of Meatballs

So, last night after we left the endocrinologist‘s office, I couldn’t shake this book.  “Cloudy With a Chance of Meatballs.”  If you are not familiar with the story, basically in the town of Chewandswallow they get their meals from the sky.  They never  quite know what’s coming, but three times a day it rains things like juice… or meatballs.  Eventually this starts to become a problem for them, as the portions get larger and more unpredictable.  It is a cute story, worth a read if you have a little one.  But nothing I want to model my LIFE after!

This was the long awaited appointment for my 8 year old.  The one who has been showing all the signs of precocious puberty.  She has grown 5 inches in the last several months, lost almost all her baby teeth, grown 2 shoe sizes and now at 8 yrs, 9  months, stands 4 foot 9.  This is the appointment where we were going to get the results from the testing, and she was supposed to tell me that the blood in fact confirmed the early start of puberty.  Then we would go home, and start having chats, and we would make it through.

Except, as I have said before, things don’t often go according to plan.  So, regarding the extensive lab work up, she said, “Your daughter is NOT in puberty.  All the hormones that tell the brain to trigger development are sleeping.”

Question dog Excuse me?

How then do you explain the breasts that are developing, the palpable painful lump, and this giant growth spurt that you called “typical of puberty?” AND What about the breast sonogram?

Well that is normal.  It says “Tanner Stage II development.”

 

But doesn’t that mean puberty?, I asked.

Well, yes.

But you said… (As I reach for a copy of the report)  Hey, it also says “area of palpable abnormality of clinical concern… compatible with Tanner Stage II development!”  So, should we be concerned? (Getting slightly more alarmed and annoyed)

No, she says.  Look here at the pelvic report.  It says the uterus is not in puberty, but the ovaries are enlarged, and consistent with early hormone stimulation.

Stimulation from what?  Because now I am confused.  Is this puberty or not?

So, I kid you not, she draws me a picture.  A crude picture of two breasts, a uterus and two ovaries.  She puts a small dot on one of the ovaries and Xs it off.  She says that at some point she “probably” had a cyst on her ovary that caused her body to think it was in puberty and it began developing.  But don’t worry, it stopped because the hormones in the brain are not awake.

WHAT? Has anyone told her body?

I don’t need to see you again, unless you have a problem…as she pushes me out the door.

What about the sonogram that suggests clinical follow up?

UM, HOUSTON…. we DO have a problem!

I swear I almost asked for my CoPay back on the way out.

Is there anyone who gets that Cowden’s Syndrome is a RARE disorder characterized by a mutation on the TUMOR SUPPRESSOR gene?  If the body and the labs don’t agree, I think we probably have to look further.  Just in case there is a tumor somewhere that didn’t “fall off.”

Everything about this, from the difficulty of scheduling it at a major NYC hospital, to the way the report was written in the double speak of maybe its normal, maybe not, to the contradictory interpretation by the doctor from what she sees on the body and the paper, makes no sense to me.

I have nothing against weather reporters.  But they are wrong a lot.  Their life is of guesses and predictions.    I guess I hoped for more from the doctor than Cloudy, With a Chance of… Puberty!

I will get my umbrella,  my Mommy mouth, and all my questions.  I will keep asking until we get some answers.  But really, why must it always be such a battle?

You Don’t LOOK Sick

Published on by beatingcowdens3 Comments

“You don’t look sick!”

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.

Impersonating ME?

Published on by beatingcowdensLeave a comment
I wish people would be careful who they impersonate. I am like this “big cat.” Waiting peacefully… until…

Have I mentioned the doctor and hospital bills?  Not that we need to pay them very often.  We are blessed with two solid insurance policies.  It’s the dealing with them.  When you are at appointments as often as we are ( and the COWDEN SYNDROME/ PTEN mutation seems to make sure of it!), the errors are countless.  And the HOURS on the phone…

I shouldn’t complain.  I have been home enough the last few months that I can spend hours on the phone.  But, really after a while when you are fighting so hard for your health, and many days your sanity, the incessant battles with billing departments can be draining.

And, when  I am at work – that is when I could really use a secretary, or a clone.  Either way…

The dreary weather is getting to me.  I am lonely.  I feel better, but can’t do much.  It’s nice to be home, but not with so many restrictions.  The internet is full of poison.  I can not read one more article on post menopausal weight gain.  I am only 38.  This is sometimes surreal.  Menopause… I should have at least another 15 years for that!  So, I try to be productive.

Like the bill I got for a visit to the ER when I was never there.  Yep, I was never there.  I have made no less than 15 phone calls about this since May 10th when the bill first came in.  Everyone is suspicious of me.  They have bounced me through departments.  I even got a letter from GHI saying the bill was filed electronically using my Social Security number.  (Because I needed one more worry.)  Seems to me it should be easy to trace.  If someone cared.

I just sent an Email to the general bank at the hospital.  It was 2 hours ago.  They have already asked me for more information and rerouted it to a few supervisors.  At least someone is doing something.  But me, I am waiting.  My credit scores were just printed for our mortgage last month.  They were very good.  I am  sure I need to call and request detailed reports.

Every time I go to the hospital, whether it is for my daughter or me, they want copies of the insurance cards, copies of our driver’s licenses, (mine and my husband’s) and our social security numbers.  I never give out my daughter’s – that is the one piece of information I can withhold, but they get everything else or they won’t treat.  They have that power.

What I get are the bills.  Some of them are just fun to deal with.  Like yesterday when I told the hospital that did my daughter’s last surgery that it had to be illegal to bill our primary carrier $40,000 and get payment in full, then bill our secondary carrier $25,000 and get nothing (because the bill was overpaid in their eyes) and then try to tell me I owe a $300 deductible.  Nope.  Not paying it.  The supervisor adjusted my balance to zero when I questioned their billing practices.  Surprise.

Now I have the unique job of proving I actually was NOT at a hospital when someone says I was.  It may take me all next week, but I will get it done.

Although I would like to have a chat with the poor soul who pretended to be me.  Ok my life could definitely be worse – but really, pick more carefully who you want to impersonate buddy.

I am busy here kicking the bottom of a rare disease.  I am tired, but I am a fighter.  Don’t mess with me – unless you really want to try being me.  I fight full time.  And like I said, when it’s important – I win.

The phone call continued….

Published on by beatingcowdensLeave a comment

After I left off on the last post the “nice” man had the misfortune of coming back ont he line and reminding me AGAIN, that I had NO IDEA how difficult this was to work out.

I made him wait before he put me on hold again. “In the fall of last year my daughter and  I were both diagnosed with a rare genetic disorder that no one seems to have ever even heard of.  The few doctors who have, or who are willing to learn, have put us through every test imaginable.  In March I had a mastectomy to protect me from breast cancer.  I was pretty surprised to find I already had it.  Last Wednesday I had a complete hysterectomy.  I am 38.  I was told the risk of NOT having one was too great.  My 8 year old daughter has grown 7 cm in the last 5 months.  She has grown 2 shoe sizes.  She now stands 4 foot 9 and 73 pounds, and will not turn 9 until August.  Her endocrinologist, the local one – not the cancer specialist she sees for the thyroid – has tried to educate herself about this syndrome.  She examined my daughter and said it may be precoucious puberty, but it may be too early for that.  Sometimes a tumor can hide and mimic puberty.  I know a mom whose 8 year old has Cowden’s.  She is 22 now, but at 8 had ovarian cancer. They had told her it was precocious puberty.  We are at a doctor, for something, AT LEAST once a week, usually more.  So, if you think I am crying because I am weak.  Think again.  I am crying because I don’t want to yell at you.  I am crying because I am exhausted.  But, if you tell me one more time “I don’t understand” how difficult this is, I WILL explode.  You think it’s difficult to schedule.  TRY LIVING IT!  This is MY LIFE!”

Silence.

Still Silence.

Hello? Are you still there?

The “nice man” on the other side of the phone says simply, “Wow. I had no idea.”

“I know.  But you do now.”

Yes.  And I am going to make this happen as painlessly as possible.  I will call you tonight. (HAHAHAHA I thought)

The phone rang at 5:30.  The breast sonogram will be today, right after the pelvic.  Someone from the breast imaging center will walk over to where we are to oversee.  The results will be available to my doctor by Tuesday.  It will be a long weekend, but we are used to that.

Maybe he is nice man after all.

Motherly Worries

Published on by beatingcowdensLeave a comment

Her bloodwork was Saturday – the bloodowork to check the hormone levels.  Wednesday I will take her for a pelvic sonogram.  They are still trying to figure out who will do the breast sonogram.  Everyone is afraid.  No one knows what they are looking for.  Major NYC hospital, and everyone is afraid.  It doesn’t instill confidence.  When you have a rare disease, no one knows quite what to make of the realities that we face.  But this is my girl and I will not put my head in the sand.  Someone will do it.

She danced this weekend.  It was her second recital.  She will not dance on Broadway, but to her proud parents her smile was worth a million bucks.  Her ability to move – courtesy of PT and Celebrex, and her award winning smile.  For a few minutes on that stage, she was just like everyone else.  Sometimes its nice to be “normal.”

In a few minutes I will call to schedule the next MRI/MRA of the knee to check on the “leak” from the femoral artery causing her AVM.  We will do that the last week in June, just in case she needs more surgery, there will be time in July.

Of course all that depends on the hope that our June 14th appointment to check on the thyroid nodules is uneventful.  “They are precancerous.  They will turn.  We just don’t know when…”  At some point she will lose her thyroid to cancer.  And we can only wait.

Sometimes its good to be home.  To recover from surgery.  To make some phone calls.  Sometimes it just lets the worry fester.  I can accept that I have this damn disease… but why did it have to mess with my girl?  As a new internet friend eloquently said – eff you Cowden’s!

Recovery and Body Image

Published on by beatingcowdens1 Comment

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….

Bite Me Cowden’s – I am tired!

Published on by beatingcowdensLeave a comment

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!

“You are Special – You are 1 in 200,000”

Published on by beatingcowdens2 Comments

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.

Happy Mother’s Day.