Category: Daily struggles

The phone call continued….

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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.

“Please Hold…”

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I bet I can finish this post before they take me off hold.  I have been on this call for 28 minutes so far.  I have been transferred 4 times.  Finally I cried.  That got me a sympathetic male supervisor.  Sympathetic in that he has left me on hold for 20 of those minutes, but has checked in on me 4 times.

How do I do this when I am at work?  Fortunately I haven’t been at work much, but I understand how people lose their jobs.  I am a teacher.  I can’t spend a period with my cell to my ear waiting to be off hold while I teach.  It just doesn’t work like that.

The breast ultrasound.  No one wants to do it.  I get it. She is 8.  It’s odd.  Get over it and do your damned job!  No one wants to be responsible.  Guess what idiots?  We have to check.  And if you know what a normal breast looks like – this shouldn’t be so tough.

Anyone care that I don’t want to do this either?  The reality of it makes me ill.  Anyone care that I am only 6 days out of major surgery, my anxiety is at a peak, and  haven’t even told her we are going yet?  Anyone else give a shit that this isn’t just a weird scheduling inconvenience?  This is Cowden’s Syndrome.  This is our life.

The man (the call is at more than 35 minutes now) just came back to tell me he hasn’t forgotten me, but this is a lot more than I think.  REALLY?  He is lucky I don’t take the time to tell him what I think.  Maybe he isn’t so nice after all.

I am still on hold….  This sucks!

Motherly Worries

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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

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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….

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

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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.

I don’t have a problem with God, it’s His fan club I can’t stand…

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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…”

Reality…

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The nurses started to call today.  It’s time to review all the information for the hysterectomy.  Next Weds., at this time I hope to be done and home.  Why now do my insides hurt?  I never had pain there before.  Paranoia will mess with the mind.  Maybe I will frame this pathology report when it is benign.

Saturday we take my girl to the endocrinologist.  Her right nipple is hard and off color.  At 8 it is so hard to tell what is normal, but she shouldn’t be crying when she touches it.

Reality.  Work tomorrow.  Doctor tomorrow.  Dancing school tomorrow.  Meeting tomorrow.

Sometimes reality tries to act so normal.  Nothing is normal here.  Ever.