Danger.com – Post Op on the internet

I am seriously starting to think that should be a website.  One that reminds you when you have a rare disease its just dumb and dangerous to blindly internet search anything.

So yesterday was my hysterectomy.  Ten and a half weeks after my double mastectomy.  Two four hour surgeries.  My body has had it.

I had talked to my surgeon about going home yesterday.  She said it would be fine if I tolerated the surgery well.  I was set to go home.

Instead I have a bruise on my arm from the epinepherine shot.  Not even sure if I spelled that right, but you get the point. And, the reminder ringing in my ears that “If you try to move – we are going to need a crash cart.”

I have always had low blood pressure.  It is not unusual for me to run 85 over 60.  No doctor has ever been alarmed.  I am used to the quizzical stares, and I take a minute beefore moving when I stand.

But yesterday, after four hours under anesthesia, and after not eating for about 18 hours, my body was a bit testy.  Maybe it was trying to tell me I should slow down on the organ removal.  But recovery wasn’t going well.  I didn’t feel right.  I had a terrible headache, and all of these bells kept sounding.

I wanted to use the bathroom.  I needed to go.  I tried to get up and the nurse said,” not yet.”  We went through this a few times.  She brought me a bedpan.  I laughed to myself.  There was no way I could make that happen.  I thought of my daughter and the times we tried to make her use one.  We are a lot alike she and I.

So it was getting ridiculous.  I sat up.  That was when they all freaked out.  Apparently 74 over 33 is dangerously low.  Up went the feet, down went the head, and over was any chance of getting home.  Somehwere in the middle of all this they inserted a catheter right there in recovery.  Even that brought no relief.  My poor bladder wanted to pee.

My anxiety was through the roof.  The tears were flowing.  I was just beside myself.  Hours later – after 8PM from an 11 AM surgery, they brought me to a room – where I lay awake all night.  No food… and no mobility.   Catheter and IV  – UGH!

At 5 Am when they unhooked BOTH the catheter and the IV I sat up.  I peed.  I walked.  All was right with the world.

Then I got home.  I started wondering about low blood pressure.  What causes those kinds of drops?  Kidney issues – (what is the incidence of renal cell carcinoma in Cowden’s patients – almost 30% I think) or endocrine problems – thyroid (HUGE cancer risk – part of mine still sits in my neck like its own ticking time bomb) or heart problems (what the hell, that’s not even on the Cowden’s list!) No more problems.  No more doctors.  Really… I think I either need stronger medication for the anxiety, or a slower search engine.

On the upside – my uterus, having served its one useful purpose – sits in a pile of medical waste alongside my ovaries somewhere.  Huge risks – gone.  Its a tough battle, but I am on the winning end right now.

I wonder how many organs you can have removed before you thoroughly traumatize the body?  Maybe I should look that up… tomorrow.

Bite Me Cowden’s – I am tired!

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”

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…

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…

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.

Cowden’s Syndrome – I guess it’s here to stay!

So it was a really nice doctor – or two, who said in the summer of 2011, you have to take your daughter to a genetecist.  There are too many unconnected “dots” I was told.  Someone will be able to diagnose something.  But, having gone almost 8 years with her multiple surgeries, countless doctors appointments, and unexplainable ailments, I had my doubts.  I spoke for an hour with the genetic counselor before the visit.  I think it took the doctor all of 20 minutes to say, “It’s a PTEN mutation, most likely Cowden’s Syndrome.  We will test her today.  She will be positive, and you will be too mom.”

P – what?  Cowden’s Syndrome – What the hell?  How could he know that from looking at us?  Was I missing something – some kind of freaky attributes that made us so obvious?  I left more self conscious than curious, and never even looked up PTEN – until we got the call that she was positive.  By the time they called me in for my blood test, I was sure.  I had read everything I could get my hands on.  It explained not only her surgeries, and many of her issues, but also my own.  My positive test results a few weeks later didn’t even startle me.  What did was the admonition from the doctor.  “These cancer risks are real, and you are in real danger.  You both have to be watched, but she is only 8.   You are 38.  The threats are much more severe for you.”

Processing the permanence of a genetic disorder took some time.  Ok I am lying.  I still have not fully absorbed what all of this means, and the reality that it is here to stay.  Mom was tested.  She is negative.  Little sister was tested.  She is negative.  Happy for them – truly happy.  But, what the hell?  Where did it come from, and why did I have to give it to my beautiful girl?

Diagnosis was followed by a whirlwind of tests.  First for my baby (ok she is my one and only so even at 8 she is sometimes my baby)  Brain MRI – negative.  Thryoid sonogram – positive for 4 nodules.  Biopsy – suspicious.  Transfer the slides to a new hospital – precancerous cells.  So we come back every 6 months we are told.  Kicking and screaming, I wanted more.  More reassurance that when we come back in June my little girl won’t have thyroid cancer.  There is no reassurance.  just reality, and appointments.  June 14th – tick tock.

And her AVM (Arteriovenous Malformation) that mangled web of veins and capilaries in her knee because something went wrong off the femoral artery in the leg – well we can thank Cowden’s for that too.  Four surgeries later they still can’t fix it.  Said there is a leak in the artery.  A small one they say, as if I should feel better – like the leak in a tire.  It’s slowly bleeding into the knee joint, causing its evil damage while we wait to see if the doctor 5 hours away can fix it.  Celebrex masks the pain, and a low dose of xanax puts her to sleep at night.  New images the last week in June will determine the rest of what her summer holds.

So I try not to be angry, as I read the new studies.  85% lifetime risk of breast cancer, 35% risk of thyroid cancer, 28% risk of endometrial cancer, 9% risk of colon cancer, 33% risk of kidney cancer, and 6% risk of melanoma.  Those are only the ones to be named.  The PTEN gene, responsible for Cowden’s Syndrome and a few other disorders is the tumor suppressor gene.  It regulates cell growth.  So since ours is broken- tumors grow.  Benign and malignant – they grow.  And its our job to seek them out, find them, and remove them – before they hurt us.

Vigilant is the word I use.  We remain vigilant, about every body part.  And I am watching for the both of us.  Spending hours at doctors appointments, checking.  Explaining the syndrome to doctors who have never heard of it.  What are the odds of two 1 in 200,000 conditions sitting in your office at the same time?

Saturday we go to the local endocrinologist with my daughter.  Her nipple hurts.  Really hurts to the touch.  She has already had one breast sonogram that was deemed “normal,” but how can we be sure?  Everything has to be checked.  Is it normal development?  Is it supposed to feel like that – or is there some evil tumor lurking?  I thought I was paranoid.  Actually I hoped I was paranoid, until I met a mom online whose 8 year old had stage 1 ovarian cancer.  That 8 year old is 22 now, because her mom was vigilant. 

So that same vigilance led me to the decision of prophylactic mastectomy earlier this year.  Mom is a breast cancer survivor, and I had had 7 suspicious biopsies over the last 14 years.  That’s it.  With an 85% lifetime risk, my chances were imminent.  So I went for an MRI on February 1st, just to confirm I was “clean” and had the double mastectomy with immediate implants on March 5th.

On March 13th the pathology report that was handed to me by the surgeon read “Ductal Carcinoma in Situ.”  Along with all sorts of other scary crap – I had breast cancer.  I had it, and I never knew it, and the MRI never saw it – but it was gone.  I hugged the little girl whose diagnosis saved my life.  I took a great big deep breath, and began to like those silicone implants.  One battle against Cowden’s Syndrome – won.

On May 16th I have a hysterectomy scheduled.  A forboding looking polyp found its way into my uterus.  Risk of endometrial cancer is too high to take chances.  So out it comes – all of it.  I can only hope and pray that the same results come through on pathology.  Either it was benign – or it was so contained that it is over.  No worries.  For that sigh of relief I have to wait a few more weeks.

So this is it.  Life with Cowden’s.  I won’t let it define us.  I won’t let it become who we are, but it is a definite part of us.  It factors into every decision we make.  My girl is wise beyond her years, and already asks questions like – when will I have to have my “boobs cut off?” and “will my kids have to go through this?”  Questions I can not answer, because I just don’t know.  My husband, her Daddy is a godsend – keeping the mood light and the laughs flowing.  We have no idea what tomorrow will bring, but I guess neither does anyone.

Maybe the fact that we know about this disease, about these risks, will be better in the end.  Maybe, just maybe, one day this will all make some sense.  One thing is for certain – we will stay vigilant.  That is for damn sure.