In October I underwent a preventative double mastectomy and reconstruction.  The reason for this was not to treat the previous breast cancer, but to prevent a future occurrence, something quite possible given my age of diagnosis and family history.  Until this week I have had no complications or issues with the surgery or reconstruction process.  In fact, I've been absolutely THRILLED! 

There are many types of breast reconstruction, which is great since we are all different and have unique concerns and preferences.  I opted for a more traditional approach - removal of breast tissue, followed by an "expander" placed under the pectoral muscle.  Over time saline was injected via a valve under my skin into the expander, causing it to, well, expand.  I had about 7 "fills" resulting in my new perky breast mounds. 

The fill process was kind of challenging, for me it caused alot of back pain, likely due to my pecs stretching.  I found it actually more uncomfortable than the actual surgery, which I  breezed through.   I then entered the waiting period for the muscles and tissue to settle in to their new shape.  Once that has happened, after at least 3 months, I was to have a second surgery to replace the expanders with more permanent implants, either saline or silicone.  I had to reschedule my original swap surgery due to some broken ribs obtained by back country skiing.  I had planned on an August swap, after the summer triathlon series.

Over the last week I've noticed something odd with one of the expanders.....it was getting just a bit softer (they are rock hard - not kidding - poke your knee cap and that is what they feel like under your skin!).  The last couple of days I've noticed some dramatic "shrinkage" so to speak.  My expander has sprung a leak!  After meeting with my plastic surgeon today I'm scheduled for surgery on Monday.  While the leak isn't dangerous (it's only saline) I'm trying to get my head around the turn of events. 

Not only am I quite lopsided for a few days, I'm bummed.   I'll be recovering most of the summer, unable to enjoy many of the outside activities that I enjoy.  Maybe at the end of August I'll get to do some events....we'll see.  And, while there is never a great time to be away from the office with how busy things are, this is really not the best time. 

It's always something, but heck, this isn't chemo.....

It's been 3.5 years since I finished my chemo regime.  One hard hit area was my toe nails.  Taxotere caused my fingers and toes to become superficially numb, yet hurt at the same time.  I couldn't wear shoes for months, which was meant I was a sandals and socks girl through the winter.  My nails became loose.  Both my big toe nails almost evacuated my body.  They were very loose, and just the most gentle pressure caused them to bleed.

They have really strengthened, but they still look funny. On Saturday I bumped one, and it got really loose.  Yesterday I bumped it again and ouch, lots of bleeding.  Fortunately I already knew where the Walgreens is in Ponce,  Puerto Rico is so I could pick up the first aid supplies I needed.  They carry all the usual stuff one expects at a pharmacy, in addition to 34oz containers of Rasta Gel. 

While the toe nail effect is uncomfortable, I like to think that the chemo did it's job destroying any stray cancer cells that had been in my blood stream looking for a new place to call home in my body.  It's icky stuff, but it works. 

What do you do if someone you care about is facing a cancer diagnosis?  Here are some ideas based on my personal experience:

Please Do:  Send cards, notes, e-mail and voice messages to the person.  You will not be "bothering them".  Just understand that we may not have the energy or focus to respond.  So, even if you don't get a response, keep the little notes and calls coming.

Please Do Not:  Share stories of how your aunt/cousin/friend just suffered terribly for months and died a painful and premature death from the same disease.  Believe me, our imaginations do not need any more food for fodder.  

Please Do: Share stories of how your aunt/cousin/friend had a similar diagnosis months/years/decades ago and is thriving.  Examples of how they are thriving are wonderful, such as this person just completed a marathon, or returned from Italy.  Also,  acknowledging the struggles they had during treatment are ok too.  

Please Do Not: Ask "how do you know it is all gone?".  For breast cancer, and many other cancers, we do not, for many many years ever get a clean bill of health.  We hope and pray that there is No Evidence of Disease (NED).  In many cases the first sign of metastatic disease comes from some kind of unexplained pain that won't go away, a nagging cough, or other subtle changes. Blood work, while most of us do it, isn't very accurate, and only shows markers well into advancement.

Please Do: Get on line and learn as much as you can.  We are likely in overload mode, and you doing research along side of us can be a relief.  Learn all you can about traditional western treatments, alternative treatments, support groups and resources. This way you can be someone we can talk to, and not have to explain the basics of treatments and options.  You can be a great resource.

Please Do Not: Be afraid to just listen.  We might be very afraid and want to talk about our concerns of dying, or we might go into fighter mode talking about how we are going to kick this things bootie.  Or, we might swing between both spectrums.  So, no shushing,  no well meaning remarks about how you "just know they are going to be fine".  Reality is no one knows the path of the disease.  And, while making well meaning statements that you personally want to believe, you may be shutting down communication when we need to talk and share the most.

 Please Do:  Be conscientious of our immune systems.  While visits, lunches out and other activities are typically ok, over certain periods we may have very low white blood counts, and we many not be able to fight off even the most benign little germ. So, unless you are absolutely positive, leave the toddlers at home (bless their little germ factory hearts) and wash your hands frequently while spending time with us. 

Please Do Not: Take us at face value when you ask what you can do to help, and we say nothing. 

Please Do: Consider taking action in areas that you believe will help us the most.  Organize a crew of friends to deliver meals on a schedule.  Have a book/magazine drive so we have a library of things to read in our house.  Drop off a bag of movies or music, or give us a netflixs membership. Come by and pull weeds, mow the lawn, clean the bathroom or take out the trash.  Make sure we don't have to go to treatments alone.  If we have kids, help us with carpooling, getting to soccer games or brownies meetings. 

I hope this might be some help for YOU should you find yourself in a situation where someone you care about is facing a life threatening diagnosis.  A time like this may make you helpless, but you are not - you are powerful!  Don't be reluctant - reach out!  Cancer treatment frequently is lengthy - in my case it was 8 months from diagnosis to my last treatment, and then a long recovery -  during this time we may not be the person you were used to having as a friend.  So, please stand by us!  We need you.

I wrote this Top 10 Letterman style list about 3 years ago, shortly after I finished aggressive treatment for the breast cancer found lurking in my body discovered 4 years ago this week..  

10.  Bald is liberating.  You learn that no one, absolutely no one, cares about your hair.  All those hours washing, conditioning, moussing, styling, spraying, teasing, curling, spraying some more, were really for naught.  (and, you can get your head henna'd for fun!) 

9.  Too much of a good thing can be bad.  Night after night, eating a pint of Haagen Dazs Chocolate Peanut Butter ice cream with out gaining weight sounds good, but it can actually be bad.  I have a hard time looking at the stuff now, and it was one of my favorites.

8.  Each and every day is truly a gift.  We are all dying, however not everyone recognizes this.  And, many people don't even want to talk about it.  I now make decision in my life with this as reality, and that is all good.

7.  A huge wake up call to live in the present.  Not tomorrow, not next month, not last year, but a call to live in each and every moment of today.

6.  Most, in not "all work/other crisis" aren't worth getting worked up about, especially when you compare these crisis to a day of chemo.   

5.  For real, you start putting your own health and well being first - above all other things - many of which should  never have even made the list.

4.  Whether you want to or not, you find out who are your true friends.  I found that my friends (new and old) were even more generous, loving, caring and compassionate than I ever would have dreamed.  And, I already thought they were awesome people.

3.  Family becomes even closer and more precious, and I wouldn't have thought that was possible.  'Nuff said.

2.  Finding you have a Husband who stands by your side and evolves into a person 'he didn't even know he could become' is an amazing partner, and someone I, with out a doubt, want to share my life with....it puts "in sickness and in health, and in good times and in bad" in perspective.

1.  God hold you in His arms during really scary times.  You don't get more than you can handle if you surrender your trust to Him.  Greater Trust in God and in His Healing Love is the best thing of all.

I believe early detection saved my life.  Please make sure annual mammograms are part of your health regime, and of those you care about.  The only thing worse than hearing the words "you have breast cancer" is having it, and not knowing......

Yesterday was the 4 year anniversary of a cancer diagnosis - mine.  I was busy having a life, making plans for the future when  a routine mammogram identified as a "highly spiculated mass, suspicious of malignancy" per the radiologists report.  

Given my family history of breast cancer I had been getting annual mammograms for a few years.  I recall my doctor saying I didn't really need a mammogram that year, and he suggested my insurance might not cover it since I was under 40.  Good thing I did what I knew was right for me, other wise my prognosis might have been a lot less rosy.

I'm dedicating this weeks blogging efforts to share my story.  My intent is to debunk myths surrounding this experience, to share things I learned, and to hopefully offer
some insights that you may find useful should your wife, mom, sister, daughter, friend (or even you) face a similar diagnosis. 

 Tomorrow's topic:  Nice things sometimes come in very ugly packages