EXHALE......

Long before I started my blog I thought about the day I would discover I had cancer.  I know that sounds awful, but when so many people in your family have walked that line, you just wonder when your turn will be.  In our family there was even a little mantra about "if you get past 50...you're good".

So I grew up, got married, had babies and ....waited.  I went for my mammograms, and ultrasounds and every other testing my doctors recommended.

At age 50 I discovered my BRCA1 mutation.  2 weeks short of my 51st birthday I was diagnosed with cancer.


Almost 2 weeks ago I had a double mastectomy.  I steadied myself knowing if something was found at least it was small.  My surgical reports show NO cancer.  NONE.

There was some precancerous stuff found, which just goes to show, I made the right choice again.

 I am thankful.  grateful.  That this evening I can finally...

EXHALE.

The Other Side of the Mountain

I had a double mastectomy 11/19.  Hopefully preventative, although we don't get the full pathology report back till tomorrow. The past week has been filled with drugs of every type.  Since I gag just hearing the word "Morphine" I had a lovely epidural in addition to my IV pca pump along with lots of good anti nausea meds for good measure.  My pain levels have been tolerable, but some of the dreams have been a little disconcerting.  I've had several conversations with my dad (who died 8 yrs ago), worked on policy and procedure protocols I can no longer recollect.  Some days I just plain lost track of what day it was,  and frankly didn't even care.

I've been better since I've gotten home.  Taking my meds by mouth and dealing with the 4 drains attached to me.  I'm hoping to shed one, two (or more!) of those drains in the next few days.

In terms of my breasts.  I have small adolescent breasts, no nipple, larger suture lines with hard-ish expanders underneath.  I've been told they look like they're supposed to.  SO for now I guess that will do.

One think I do know for sure is that as soon as I am free of these drains I will be shopping for any kind of blouse or dress I could NOT wear due bra requirements.

Because I now have NONE.

A girl's gotta do what a girl's gotta do

A Fond Farewell

The time is quickly drawing near for the first of my breast surgeries. I will be having a double mastectomy on Thursday Nov. 19th.  

Naturally this has been a hard decision.  Not that I need my breasts or that they define who I am.  But they are a part of my body that for most say 

"Woman"

When I knew I was going to lose my hair to chemo, a wise friend told me that my hair did NOT define who I was.  I took that thought to heart.  I still do.  Although this time it's my breasts.

Be it my wedding day

or feeding my babies

My breasts have been a large part of my life.

But none of that defines me.

So it is with sadness I say goodbye to a part of me that has taken me from 

"crayons to perfume"

It makes me cry.

Not going to lie. 

Half Baked Genetic Testing

Direct to consumer genetic testing is becoming more popular.  I am not completely sure how I feel about that.  I think getting tested if you are at risk is certainly a positive.  However there are some major drawbacks to getting tested without a genetics counselor.

Oh sure, I may have been able to spit into a tube or scrape the inside of my cheek...send it to a lab somewhere and get my BRCA1+ result.  

That is the EASY part.

BUT

Would I have known what to do with that result?

Sadly, I think not.

That lapse could have resulted in a stage 3 or 4 cancer diagnosis instead of a stage 1

and that my friends *is* HUUUUGE 

(said in my best Donald Trump mocking voice)

I think it's a bit like having some of the ingredients for a complicated recipe...but not actually having the recipe.

So are you missing a key ingredient?  How exactly are those ingredients combined and what is your desired result?

Not only can a genetics counselor take a detailed family history to pinpoint the specific genes to test for, they can also tell you the risks of your mutation, if your tests come back positive.

They also can help you set up appointments and further preventative testing so that you are accurately screened and cared for in a manner specific to the mutation you carry.

For me...that was life saving.

Within a month of my brca1+ diagnosis I had met with my breast surgeon and gyn oncologist, had a mammogram, a pelvic ultrasound and blood work drawn.

I began the process of scheduling my first prophylactic surgery.

All of this occurred while I was working full time, and in the process of selling a home, buying a home AND moving my family cross country.

Being completely honest, if I had done a mail order test I am very sure I would not have done much else, given all the other events going on in my life at that time.

So yes, I support genetic testing

BUT GENETIC COUNSELING SAVED MY LIFE

Because when you cook a complicated recipe I need all of the ingredients AND the information to make it.

In this case, that recipe was my life.

JSS

My kids and I are huge fans of The Walking Dead.  We all eagerly await the season every year when it starts up in October.

In tonight's episode one of the group, a teen who has lived on her own writes 

"JSS"

everywhere.

By the end of the episode we learn it means

"Just Survive Somehow"

While this is appropriate for just about anyone, I think it goes double for anyone in either a zombie apocalypse

OR 

carrying a cancer causing gene mutation.

Until you are in that moment, I am not sure you completely get it.  

Prophylactic surgery is the VERY definition of ...

Just Survive Somehow.

And so I am.

I couldn't help but think Carol would be a great BRCA mutant.

Now that my hair's growing I'm proudly rocking Carol's short gray hair style.

(photo credits to TWD and MM)

Adventures in Plastic Surgery....Part 1

The Consult

I've been pondering just how much to put on my blog about the process of my preventative mastectomy and have decided I need to keep it real.   Buckle up it's going to be a WILD ride.

My Gyn Oncologist cleared me for surgery so I have begun the process of having my breasts removed.  My breast MRI was clear in August,  I am hoping for a true prophylactic surgery.  They tell me this should be the case.  But I think I have a little PTSD going on since that was what I was told before I had my ovaries and tubes out.  Then SURPRISE they found cancer.  I generally like surprises, but that one?  Notsomuch

A few weeks ago I went for a consult with a plastic surgeon.  A doctor who, I hear from people who know...is supposed to be "the guy" to go to.

We talked a bit about what I hoped to do.  Thankfully he agreed.  Then he took a look at my *ahem* girls.

He did some measurements and then we discussed his recommendations.  The surgery I'm looking to have is Diep Flap surgery.  Which is basically using your lower abdominal fat to reconstruct breasts.  It is a long microsurgery which means some significant surgical risk.  The benefits?  I have my own tissue instead of breast implants.  Plus I get a nifty little tummy tuck out of the deal.  I was also hoping to have one major long surgery but my PS feels it would be better to do it in two.  Initially I was somewhat taken aback by that.  But now that I've had time to think about it? I think he's probably right.

Then I had my photoshoot with the office photographer.  Also known as the "before".  Me and my disposable underwear.  In their studio. This is as close to a nudie as I am ever going to get.

"Draw me like your french girls, Jack"

So on my way back from my appointment I called my sister who is my bff and probably knows more about me than I do myself to discuss the appointment.

I also wanted to share my irritation over my measurements.  Now 3 kids, weight loss and weight gain and then loss again have not been, shall we say "kind" to my breasts.  I often like to joke when I lost weight a few years ago I went from a 44DDD to a 38...LONG.

So the surgeon measures my breast length and says "37"

I thought he meant INCHES.  

I couldn't figure out how that could be??? I mean that's 3 feet, a yard.  I am only 5'5 tall??

After complaining to my sister I realized that evening (ok as I was measuring myself) it was 37 centimeters.  

While still LONG...it isn't guinness world book of records LONG.

Thank god.

I also had to have a ct scan to map out the arteries and veins in my lower abdomen.  Which was the easiest test I've had in radiology.  

You know you've had too many tests when you start thinking about what flavor of contrast you like best.  I was almost upset I didn't have to drink anything at all.

So now my breast surgeon and plastic surgeon's people get together and give me a date.  Probably in November.  

Hoping my 2 last bras with steel support girders hold out till then

Hereditary Breast and Ovarian Cancer Week- it's more than just awareness

September is ovarian cancer awareness month.  October is breast cancer awareness.  Straddling both months is Hereditary Breast and Ovarian Cancer Awareness week.

September 27th to October 3rd.

Throughout the last 2 years I have felt guided on this wild journey.  A journey that started with a crazy move from Connecticut to Texas continued with finding out I was BRCA 1+ and then discovering stage 1 fallopian tube cancer.

While I'm very sure there is a higher power at work here.  It has also made me incredibly aware of the power of my family and those that went before.

I acutely felt the loss of my grandmother and aunts taken way before their time.  The birthdays, holidays, graduations, weddings...the lives they missed.

I feel so blessed to have the knowledge they did not.  

So while we paint everything in teal and then in pink.

I often think of the fallen.  I thank them for the knowledge that saved my life.  I wished they'd lived longer.  I wish I had known them.