The All Done Club

In the world of BRCA mutants there is a little thing called "The All Done Club"

I am now happily a member.  

It means you have decided to have surgery to prevent dying from hereditary breast and ovarian cancers by having your Ovaries, Fallopian Tubes and Breasts removed.

Once your surgeries are finished you are "All Done"

None of that is easy on the best of days.

I made a few detours on my way to the all done club by being diagnosed with stage 1 fallopian tube cancer.  So being "All Done" almost had a whole other meaning.

As in DONE.

Not going to lie, that haunts me and will continue to haunt me everyday.  

But the best part of the "All Done Club"

is just that...I am finished with all this cancer business and ready to move on with my life after 2 years worth of detours and frankly, huge personal growth.

I am not the person I used to be.

Cancer has aged me.  I'll admit it.  I don't take my life for granted anymore.  I'm just happy to be here!

I am still recovering from diep flap surgery.  I hit a little detour there as well.  I developed a hematoma on one breast.  But it is resolving nicely, just not as quickly as I'd like.

I'm also looking at my first mother's day without my mom.

Geez, I can't even type that without tearing up.

I guess it's all just part of the journey

Humpty Dumpty

 

I am 10 days out from Diep Flap Surgery.  That is where they take your lower abdominal fat to reconstruct breasts after a mastectomy.  I knew it was going to be a hard surgery, but it was maybe even more so than I thought.  My recovery so far has gone well.  But with 3 large incisions and 4 JP drains I have to admit I feel a lot like Humpty Dumpty after the fall.

Stranger still, my new body.  My stomach is now flatter than it was when I was 16.  I think my belly button seems about 2 inches higher...probably because my excess belly was ...much lower?

At any rate, I'm sure it will become the new normal.  I will like it.  But right now it feels like yet another new normal to adjust to.  Admittedly I am just really tired of feeling sick in any way shape or form.  

So that's what I've been up to.  Recovering, yet again.  Hanging on the couch, spending time with my family and catching up on some Netflix series' I've been meaning to watch. 

So pardon my wine...I'll go get some cheese.

We Can Rebuild Her...We Have The Technology

T-3 Days till I have Breast Reconstruction using Diep Flap Surgery

So many feelings...

Joy! No more feeling like I have a plastic plate embedded in my chest (bye bye expanders)

OMG! I'm going to have a Tummy Tuck

Ugh...Surgery/Meds/feeling like crap, again

WHOA...8 hours of surgery followed by 2 days in ICU

Gag/YIPPEE...12 weeks out of work

I am very torn between feeling a bit like the Bride of Frankenstein 

and 

Jaime Sommers The Bionic Women

 I think I will lean more towards the Bionic Women...since she was smart AND pretty.

I also had my 15 month Gyn Oncology appointment which was all good.

In a way I feel like I see a light at the end of the tunnel, or perhaps the tunnel just got more light?

Adventures in plastic surgery part 2

Thankfully my surgery is over and I've healed well.  My plastic surgeon was even surprised it went as well as it has.  So yeah!

I'm still not enjoying life with expanders but I am getting used to it.  SO of course they expanded them a little more.  Muscle relaxants are my friends, now more than ever.  Especially at night.  Breast expander pre-op (courtesy of allergen).

But I only have one more expansion left and then will most likely have diep/siep flap reconstruction in the spring.

I went back to work this week.  It was rather eye opening.  Clearly napping and watching netflix the last 6 weeks has done a number on my stamina.  I was one hurting pup coming home that evening.  The next day was better.  I have to keep remembering this whole process is a marathon...not a sprint.


So for now I'm going to enjoy sunny 60 degree Dallas, and rest up for my next surgery.

Well I guess there's also work....3 older kids....but that's just regular life.

OH and one other item of good news I was accepted to present on BRCA including my story this summer at the National Convention of the Association of Woman's Health, Obstetrical and Neonatal Nursing (AWHONN) - my favorite professional organization.
So I have a little work to do on that project as well.  Honored and excited to be accepted to do so.

Ch-ch-changes...

I am now 3 weeks out from a double mastectomy.  It's been a rough few weeks.  But not in the ways I thought it would be.  I was very scared I would miss my breasts.  This hasn't been the case at all.  It feels strange to even write that.  But after having large breasts and always needing to wear a bra. I am really enjoying not wearing a bra and the way my clothing fits now.  Buttoning a blouse for most, is a very common occurrence, but not for me.  There were always gaping areas that needed a safety pin (or 2)! But no longer

I've tossed my large bras and big safety pins...so all good news there.


On the darker side is pain.  I have expanders in to help stretch the muscle and it seems no matter how I sit or lay they are uncomfortable.


And the darkness goes further than that. It feels to me sometimes that once cancer enters your life it seems to stay.  Even if your testing and scans are good...there's still the anxiety of what those results will show.

There is a loss of innocence that you never regain.  Yes, you've have cancer...and yes, it could happen again.

SO you live your life.  I think the not knowing perhaps makes life a little sweeter, more precious.

You look at your new body as a (for the most part) good upgrade

You learn to re-navigate the bra dept.  No more supportive/minimizer bras for me...ever.
But that leaves lots of territory to explore.  Territory I have never even looked at and frankly find ...intimidating.

I confess to finding my old favorite maximizer bra on the sale rack, to to pet it good bye.

on to smaller and better things :)

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. 

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

Ease on down the road

 

I celebrated another birthday over the weekend. One thing about surviving cancer?  I don't care about getting older anymore.  It's a option I almost didn't have. So more birthdays...is always a GREAT thing!

I'm finally feeling normal again. Also good.  

Sure, I still have some neuropathy in my feet, but I have a feeling that may just be the new normal for me.  But more importantly my stamina is coming back. For the past year getting to work and back was just about all I could handle. Now I am focused on some work projects, home projects, traveling and perhaps a new hobby...writing.

And it all feels good.  

Really good.

I've also decided to get moving on my next set of surgeries.  I had an appointment last week with my new plastic surgeon. I have started the process of having  preventative mastectomy surgery in November with reconstruction to follow next spring.

The whole thought of "preventative" surgery makes me cringe a little.  Since that was how my ovarian cancer was discovered.  Yes it was preventative...it prevented me from dying. .  

Hoping this time will be different.  But if they find cancer, they find it early.

I may be the poster child for that :)

I have to admit the thought of losing my breasts is hard.  I am struggling with it.

But today when I was shopping I realized I have had to work my wardrobe around my breasts since I was 15.  Being large breasted is truly a pain...in the chest.

So here's to preventative surgery...whatever it may prevent.  Cancer or death.  Perhaps both?

And here's to wearing cute bras without massive support, camisoles with thin straps and backless shirts.  

Silver lining?  CHECK!

Maybe even a rainbow...

Happy Cancerversary

To me...

A year ago tomorrow I discovered they found high grade aggressive cancer in my fallopian tubes after my "preventative" surgery.  It was the most surreal moment in my life.  To hear the disease I feared the most, had been found was ...terrifying.  I distinctly remember my "nurse" brain trying to hear and process the specifics as my doctor reviewed the surgical pathology report.  While the rest of my brain was screaming "OMG YOU HAVE OVARIAN CANCER! "

I've spent today reflecting on the last year.  My diagnosis, treatment and how much my life has changed since that day.  On the outside I look pretty much the same now.  Oh, my hair is a little shorter and greying.  But inside I am a completely different person. I have added a label to who I am.

I am:
A mother
A daughter
A wife
A sister
A nurse

and

A cancer survivor.

Nothing will ever change any of those things.  They each are a huge part of who I am.

Although I wish I had never seen this side of cancer.  It has brought forth a side of me and my family I am amazed by.  Cancer has stripped us down to the very core.  To appreciate life, family and friends.  To kick negativity to curb.  To realize that perhaps this is where I am meant to be.  


Some people have asked if I am going to continue to blog now that I have gotten through chemo and life has (mostly) returned to normal.

The short answer is yes.

There is so much more to write.

For example there is so much education to be done about genetic cancer from the viewpoint of those affected.  We are the first generation with genetic validation of our fears.  While preventative surgery and surveillance can be lifesaving.  They also open up a whole new set of issues and anxiety.

A few days ago on my commute home from work I was thinking about how I wished I had had my ovaries and tubes removed when I had my hysterectomy 10 years ago.  But we simply didn't have the knowledge then, we have now.  Honestly there are many places that still lack good medical care and genetic counseling for individuals with cancer family histories.

As I drove a little further I realized I have the opportunity RIGHT NOW to beat cancer again by having a double mastectomy and reconstruction before they find breast cancer.  So I have a appointment to meet with a plastic surgeon to start the process.

So yes.  My blog will continue.  My journey goes on....scary and yet I am so very thrilled to be here and to have the option to continue.