Monday, November 30, 2015

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.

Sunday, November 29, 2015

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



Monday, November 16, 2015

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. 





Saturday, November 7, 2015

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.