Tag: cancer risks

One step at a time

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Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)

celebrate

The surgeon said that the hamartomas are there.  They are large, but they are stable.  Stable is a nice word.  So, because they are stable it implies they are benign.  This is another nice word.  The game becomes seeing if they remain stable.  So, in 6 months I will have another MRI.  If they have changed – it comes out.  If they haven’t we can continue to talk about keeping it.

6_months

Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s.  Is it by coming through with the most organs still intact and cancer free?  This is such a strange, relentless disease.  It’s research, while still in its infancy is coming.  But,  I have to wonder how much more they will know a year, or 10 years from now.  And, whether I will like any of it.

We are waiting.  And we know that we are not alone.  We are waiting for Meghan’s results, and its nail biting, agonizing waiting.  But, Felix and I talked tonight and wondered what news would make us happy.  There was no easy answer.

please wait

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous.  They had scored a 3 out of 5 on some scale they use.  He told us they would turn.  We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious.  But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later.  Tomorrow will mark an agonizing 2 weeks since we went for this sonogram.  Waiting.  Worrying.  Wondering.

what if

When they tell you its “when,” not “if,” it changes things.  No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome.  It’s almost like a time warp.  A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.

time-warp

Six months seems to be all you really get.  Well, now what I have lost a few organs, I get a year on those follow ups.  But everything else is 6 months.  For both of us.

I tried to sync them up.  So that maybe the worry wouldn’t seem continuous.  But it hasn’t worked yet.

I try not to think too far ahead.  You know what Mom says about planning anyway.

I-plan-God-laughs And to think about this in constant 6 month cycles, well… forever.  It’s a little too much to manage sometimes.

So, we take it one day at a time.  Sometimes one hour.  Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

neverending road

Bookends

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So my little girl took some of the influence of her Dad and has taken a liking to comic books.  She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea.  I like Superheroes, and their “Good beats evil” message.  I know it doesn’t always work out that way, but she is 9…

I sat in the MRI room with Meghan tonight – again.  And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.

Yep, bookends.  See, back in June, on the first day after school was out for the summer we went for an MRI of her knee.  It was a Thursday, the Thursday before July 4th.  So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.

Bookends.  Our summer ends the way it began, waiting for test results.  Although I am starting to get the feeling that this testing and waiting will transcend all seasons.  I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)

And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago.  This is what we do.

We do not accept anything less than an answer that makes Mommy comfortable.  When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point.  When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow.  My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it.  So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder.  That is what the MRI was today.  My fault.  I needed to have them rule out a pituitary tumor.  We have Cowden’s Syndrome.  We grow things.  Someone should check.  Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.

And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue.  He wants to see her the next time she has strep.  He shouldn’t have to wait too long.  He also told me the right lobe of her thyroid was quite enlarged.

So we wait for the thyroid panel, and wonder if it has changed drastically.  And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.

Bookends.

We started the summer at the doctor.  We spent most of the summer at the doctor.  Scan this, check that.  It will never happen like this again if I can control it, but it was necessary this time.

And in between the bookends of MRIs, we fit in some fun stuff.  There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.)  There were some lazy days, and lots of just being together time.  We can get a lot of talking in on all those trips to the doctor.

I guess the summer wasn’t a total loss, and yet still somehow I feel sad.  Cheated.  I stress at the thought of the scheduling complications being back at work brings.  Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough.  Complicate it with Cowden’s x2 and it gets hairy.

Maybe I feel like this every summer.  Maybe I just love my girl too much.  Time marches on.  School next week ready or not!

My beautiful 9 year old!

Persistence…

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Photo came from Google.com

My daughter found this photo the other day.  She was searching “funny dog photos,” and stopped when she reached this one.  She came to me and said, “Mom, I think you will appreciate this.”

I don’t know whether I was more impressed by her ability to know that I would in fact get a good chuckle out of this, as it seems to be the story of our lives, or by the photo itself.

Ingenious really.  People do this.  They create these photos, and some seem silly or insignificant.  Until there is one photo, phrase or saying that you really relate to.  Then somehow it all makes sense.

As we turn the corner of summer into August, I know we still have a few weeks of vacation left, but I start to reflect.

School begins for me on September 4th, and for Meghan on September 6th.  When we share our summer vacation stories, what will we tell?

We snuck in some fun.  There were some play dates that were a blast.  There was a trip to the beach, even if only for a few hours.  There was swim class, and dance class too.  There were books galore – read just for fun – far after the three she “had to” read.

But this year there was no camp.  And it was strange.  I missed the schedule a bit, but it was a necessary break – for both of us.

Practical reasons wouldn’t have allowed much attendance at camp.  We were at too many doctors.

Darn Cowden’s Syndrome.  Check this, scan that, see this doctor, make sure that is ok.  Multiplied times two it could be a full time job.  But, since I have a full time job, that I missed an obscene amount of days from last spring while my body parts were being cut away – summer is for all the doctors that we can squeeze in.

Ironically, no one really answered too many more questions. 

Persistence.

Before the end of August Meghan will have had 8 (very productive) Physical Therapy sessions, 3 visits to the pediatrician, a trip to the vascular surgeon, the rheumatologist, the oncologist, the geneticist, the orthodontist, our “second” pediatrician, and she will have had an MRI and 2 sonograms.

I didn’t do so badly myself.  I will be able to boast 3 surgical follow up appointments, 2 trips to the dentist, a visit to a new oncologist, which leads to a visit to a GI doctor, and abdominal MRI, a dermatologist for a skin cancer screening, and a visit to the thyroid surgeon.

And those are just the ones SCHEDULED through the end of August.

Persistence.

Not sure where it will get us.  All these doctors.  I will get them on a nice schedule though.  Start to consolidate.  Double up days.  Next Tuesday I have 3 appointments in a row.  Why waste time?

They want us to add the cardiologist back in.  Just to be safe they tell me.  Everyone is so busy covering their own ***, they often miss the important stuff.

I get that the screening needs to be, and that it needs to be intense.  It could be argued that this intense screening saved my life.  But there is still such a need for doctors with a clue.  Doctors who care.  Doctors who connect the dots.

Persistence.

Although some days I feel like the dog, digging through the concrete… I do believe it will all pay off.

Actually, it already has.

So maybe it isn’t the “perfect” summer, but its a necessary one.  Me and my girl…. together.

Disney – 2009

Stick Your Face in an Air Conditioner and Deal With It!

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Window air conditioner, from left side

Maybe that should be the slogan for 30 something (ok closer to 40, I know) women who have been thrust into menopause.  Kind of like the equivalent “Put on your big girl panties…”

Estrogen loss and menopause.  Two more things I can thank Cowden’s Syndrome for, as I learn all the side effects connected with both – one at a time.   At least I can relate to… well, not really ANYONE in my age bracket.  But that’s Ok… I am getting used to it.

Fortunately it hasn’t been THAT bad yet, but I have found myself a little sweatier than normal, and I have been known to stick my face in an air conditioner lately while throwing an ice cube down my back.

I am not one to complain too much, but really, the reality of this one took a little time to catch up with me.

Yeah, I know it had to go.  Blah, Blah Blah… Cowden’s Syndrome, uterine cancer, suspicious polyp.  I get it.  Oh, and your ovaries are way too big, too many cysts, let’s take those too.  Sure – why not?

Nothing would have changed if I had asked all the questions in the world.  It had to be done.  And I am learning sometimes it is better not to know everything at once.

So, I am hearing words like calcium supplements, bone scan, and osteoporosis, while I have friends my age going for 20 week ultrasounds.  Don’t misunderstand me.  I never wanted another baby – but it just seems wrong.  Like I have warped into a different reality.

That’s what these last few months feel like sometimes.  A bad sci-fi movie.  I am the girl who gets all her body parts cut out, one or two or three at a time. 

I wonder how it ends. 

And, most importantly I hope the movie theater has air conditioning.  It’s HOT in here!

“I know…”

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Kids know.  They have instincts adults have lost.  Never underestimate the power of a kid.  (This was written a few weeks ago, and I am just now getting to adding it here.)

I know that my daughter is a smart girl.  I know that she is in so many ways wise beyond her years, but I never cease to be amazed by her instincts, and her ability to read people – especially her family.

She knows that we share a genetic link and that we both have the same – Cowden’s Syndrome.  She knows that we tend to grow things.  She knows about her own AVMs, and that she has some thyroid “bumps” we are watching.

I am guarded but honest when I speak to her.  It is important when you have a child who is sick so often that they trust you.  I learned there is no way to lie to her and keep her trust.  So, I answer the questions she asks, using as few words as possible, and I always stay honest.

That is why I was floored a few nights ago.  She has been having a hard time with her knee again.  In the middle of a not so common, depressive episode she complained for a while about her knee, and the permanence of the pain and swelling.  She was frustrated, and she is allowed – so I held her as she cried.

What floored me was what happened next.  She grabbed onto my shoulders and looked me in the eye.  She said “I know…”  I said, “What do you know?”  She said, “Cowden’s makes it more likely for us to get cancer.  You had cancer once and you were ok.  Are you going to have it again?  Is that why you had your other surgery (the hysterectomy?)”

I swallowed hard, intent to stay focused.  “I don’t know,” I told her.  “I don’t think so.  We just took this stuff out to be safe.”

She looked at me with those tired eyes.  She looked at me for a long time.  She held me tightly and said, “I don’t like leaving you ever – even for school.”

Holding her as tightly as I could, I said, “I know…”

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….

Bite Me Cowden’s – I am tired!

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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”

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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.

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

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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.