Scary October!

Welcome to October!  Cooler weather, hopefully some nice sailing.  But just as important - in my book anyway - Breast Cancer Awareness month.  Weeee!  Time to schedule those mammograms and/or do your self exams.  I know.  It's not really exciting enough to deserve a squeal.  But it is necessary.  And here's a little story about why.
(follow the links throughout this post to get explanations of any terms you don't understand)

Most of you current blog readers know this - but some of you don't.  And in the future, maybe there will be more readers that have never met me - only read our stories about sailing and exploring all the warm, sunny places we will get our little boat to.  This is for you. And for all the women that wonder, and dread and fear.  The women who haven't had a front row seat to my past year and 1/2.  The women who Fear the Unknown (some of you are also the ones who think we're crazy for sailing away into the sunset).  And the men who know women who are little intimidated by the test/outcome.  It's for pretty much everyone - as we can/will all be affected by breast cancer in some way in our lifetimes.

 I know so many women - even some of you folks out there reading this blog post right this minute, are doing all you can to avoid getting your mammograms.  You think it's going to hurt.  It's not. (Is it fun?  No - but if you've had a kid, or even stubbed your toe, you can survive a mammogram.)  Or maybe you are embarrassed to whip them out and get them squished.  Suck it up.  Or you don't want to face that something could be wrong with you.  Or you don't feel "sick," so clearly you are fine.  Or maybe you think/have read that mammograms can actually cause cancer.  (I can't give you the answer to that last one.  I can only say that the markers for ductal carcinoma in situ that showed up in my mammogram March 2012 were only found because I was diligent with my exams.) Or you don't have time. Or, or, or orororor.  We can make up an excuse to avoid facing our fears about anything.   But how about this?  That old saying "better the devil you know than the devil you don't" - it's true.  We fear what we don't know.  So here I am, sharing what I know so that you can hopefully erase some of that fear and get your exam done already.

I have a strong family history of cancer.  My mom and both of her sisters were diagnosed with various stages of breast cancer in their early 50's.  Pretty shocking - right?  That's young!  And you know what - it's not BRCA1 or BRCA2.  That means that it's not that famous gene that Angelina found out about this past year.  So if you can't do blood work to see if you are at risk what does that leave?  In my case, it left yearly mammograms that started when I found my first lump at 27 or 28.  It was benign.  And so were all of the others that were found over the next decade.  They were all benign.  Until they weren't.

I had my yearly mammogram the first week of March 2012.  It was 6 months after a clear diagnostic  mammogram.   This exam was not clear.  This was not new to me.  I've had ultrasounds in the past to follow up on questionable masses/areas that were too dense to be read on the mamm. films.  I went home un-phased.  Why?  Because I'd done my research.  I knew my dense breast tissue was causing the problem.  I didn't feel sick.  My mom wasn't diagnosed until 54.  I had over a decade before I had to "really" worry about it.  I knew this devil of "bad" films.

The next step - needle biopsy.  It was unsuccessful because the calcifications that were showing on the film were up against the pectoral muscle wall.  They just could not get the needle in there.  And they tried.  And I tried.  I used every yoga move I could think of to get my body twisted and contorted just right so they could get to the area.  It was useless.  They scheduled a surgical biopsy (basically a lumpectomy) on my 39th birthday.  What girl doesn't want to spend her first 39th birthday having surgery? (very funny, Universe.)

By this time, I was pretty terrified.  And admittedly, I'd been worried about a particular lump for a while.  To be clear - I didn't feel "sick" but I didn't feel "right" either.  I know my body and I knew it was a bit off.  The docs said the lump was fine.  Just another cyst.  But they biopsied it anyway - at the same time they took out the section of calcifications.

I will never forget the phone call I got while I was at the gynecologist's office.  Seriously.  (The universe has a twisted sense of humor.)  Both sites were cancerous and the biopsy margins were not clear.  My doctor suggested another lumpectomy followed by radiation.  I said no.  I wanted a mastectomy.  She said sure, we can do a mastectomy and reconstruct the left breast to match the right.  I looked at Mark - we'd discussed my choice many times before.  Then I said no.  I wanted them both taken off.  She explained that it was a very aggressive step to take for Stage 0 cancer. But it was Grade 3.  The most aggressive.

I'd done some research on chemo and radiation.  My mother had a lumpectomy/radiation.  One of my aunts did a double mastectomy, the other aunt had chemo and a double mastectomy.  I'd seen my options.  I'd learned about this particular devil of a mastectomy and knew I could face it head on.  I was young and physically fit. (Thank you Pilates abs for getting me through the recovery!)  What I couldn't face was unnecessary chemo/radiation at 39 - to be followed by unknown consequences when I'm 80...  That's the devil I don't care to know.

So what happened next?  I had a double mastectomy that April.  All the breast tissue was removed.  I had tissue expanders inserted. This surgery required my pecs to be cut open.  I had to set goals in regaining my strength.  My first big one was to pick up a large coffee cup.  (I have priorities.)   I had reconstruction in September - again, the muscles were cut open.  I lost most of the muscle throughout my body because I was put on very limited activity - I could only walk and was not allowed to get my heart rate up.  I gained weight.  I became vegan - and I got back some of my energy. When I got released to do some exercise a couple of months later, I started teaching Pilates again.   I converted to vegetarian because I was basically too lazy to get enough protein just from veggies.  And I missed my yogurt and real cream in my very much deserved cup of coffee.  In January of this year I picked up a few more fitness classes. I got stronger while I helped my students do the same.  I went back to school to continue working on my Culinary degree. In April I did my first mud run and did all but one obstacle.  It wasn't fast, but I finished.  By this summer (2013) I was teaching 8-11 classes per week.  I added some meat back to my diet - mostly because it tastes good, but also because my new muscles wanted the extra protein.  In September - 12 months and 2 weeks after my reconstruction, I did my 2nd, longer mud run and finished all the obstacles and cut my overall time.  My plastic surgeon says I shouldn't do push ups, but he never said I couldn't climb the ranger pole...

So why do I share this story?  I want you to know.  I want you to know that what you fear can be overcome.  I want you to know that you have the strength to do this - and any other obstacle that gets in the way of your dreams.  I want you to get off of your couch and do something, anything.  Anything that you love.  Anything that makes you stronger or smarter or happy.

Did the surgeries suck?  More than anything I've ever done.  Does rebuilding my muscle and regaining control of my body seem daunting?  Some days - of course.  But I was diagnosed early.  I was treated aggressively.  I learned as much as I could about this little visiting devil and did what was right for me.

You can do this.  You can get tested.  You will likely be negative - and breast cancer free.  But if your test comes back positive and you have questions - email me.  I can help to explain some of the treatment options (treatment is a very personal choice and will not be the same for everyone.  You have to educate yourself and choose what is best for You.) Just know that I will be brutally honest - because I want you to know.  I want to erase the fear and help you understand what you are in for.  You can do this.  I swear it.

I got off easy.  I knew to look for signs and I got tested religiously.  I questioned one of my doctors when he continually dismissed my concern about that particular lump that turned out cancerous.  (I changed doctors right before the exam that led to my diagnosis).  I've spent a year and 1/2 removing, replacing and rebuilding my body.  My sister did not get off so easily.  My older sister was diagnosed about 6 months after me.  She had a lump for years but did not (for various reasons) get a mammogram until after I was diagnosed.  She couldn't have cancer at 44, right?  She did.  And she was much further along.  She had multiple rounds of 2 different kinds of chemo.  Then a double mastectomy.  She was able to turn down radiation and then recently moved on to reconstruction.  She's healing now.  She had a harder path - but she made it.

Get tested.  You probably won't have it.  But if you do, it is certainly treatable.  And the earlier you find it, the faster and easier you can move on from it.  Not all stories are the same.  We are all different and make our choices for treatment accordingly. There are people that completely forego Western medicine.  There are others that do every drug treatment possible, but want to skip the surgeries - and I chose the opposite.  It doesn't matter what you choose - just choose.  Choose to be tested.  Choose to educate yourself about the exam and the possible results so that you know what questions to ask.  And if you are negative, choose to live a healthier, more active life. Prevention would, by far, be the easiest route to choose.

Is the thought of sailing away to explore things I've never seen scary?  Sure. But obviously on a different level.  We are only now learning to sail.  We've yet to be in true waves/a storm.  We haven't got a clue about celestial navigation.  What if our electronics go out?!  Maybe we should wait until we retire.  Or until we have more money saved.  Or until we know more.  Or until we have more experience behind the helm.  Or until we have a bigger boat.  Or, or, or, orororor.  The actual sailing away part is pretty thrilling to think about - but Mark one day giving up a wonderful job that he loves, and the not-too-shabby paycheck that goes along with it - leaving our family/friends and our home and the security of the American Dream?  Terrifying.  Will we face this fascinating and frightening journey head on?  Absolutely.  I can't wait!