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 :)

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

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...

Russian Roulette...BRCA style

About every three months my brain hits a major speed bump.  That's because I have an appointment for some sort BRCA/cancer related testing.

It feels like a giant game of Russian Roulette

Where you hope to god you hear a "click" and not a "bang"

I try hard not to think about these appointments too much.  After all there is really nothing I can do about them except do the testing and pray.

On top of the "scanxiety" are the mundane factors of...making sure your insurance covers the testing and getting pre authorization for testing.

I've also discovered I am now claustrophobic.  Making MRIs a challenge.  I am hoping I'll get through it with some good drugs on board.  Last year my breast MRI made me so claustrophobic I was nauseous for a day after.  

So yes, I am doing everything I can to screen for early cancer. 

Tomorrow, I am hoping to celebrate a "click"

How does my garden grow?

Or rather my hair grow?

It's starting to come back...more like duck down or peach fuzz

But I have some baby hair coming in ...and lashes...and eyebrows!

I'm still looking a little alien-ish but you can see my progress :)

I've also been actively working on getting my strength back, which means exercise and physical therapy in addition to some medication (lyrica) to decrease the neuropathy I have from chemo.

My therapists and docs say nerves come back very slowly so I have a year or two to feel better.  After that, whatever neuropathy I have left is mine to keep.

I am hoping to keep NONE of it. Because I am just that stubborn

I sometimes think dealing with the aftermath of cancer is just as hard as the diagnosis.
It seems even though I'm done with chemo, every week brings some sort of new doctor appointment or test.  While I know I need to follow up with all these various appointments... cancer is a full time job, even after treatment.

Next week is my 6 month mammogram and breast surgeon appointment.
I wish I could study, because that is one test I do not want to flunk

So here's hoping the next week is uneventful as far as medical testing
so I can get back to growing my hair and PT.

Biological Tick Tock

Back in my 30's everyone was concerned with their biological clock.  Which meant having babies.  If you were 35 unmarried and had not had children surely everyone in a 10 mile radius could actually "hear" your clock ticking.

Interestingly I feel a bit similar right now.

Of course my kids are older, and the clock I can hear ticking has nothing to do with babies.

My clock is ticking with the hope I will NOT get another cancer before I can prevent it.

Confused?

When I discovered my mutation the thought was to remove my ovaries and tubes first THEN do breast surgery to remove the risk of breast cancer.

Currently I'm on plan B

Found cancer early...treated it.

Hope to hell I can recover from chemo...and beat the clock before I am diagnosed with breast cancer.

I *could* be zen and say "Que sera, sera...whatever will be, will be"

But I think I'd need some better drugs or a nice grey goose cosmo (or 3)

to get me there.

When it comes to my BRCA mutation I'm a believer.

Cancer?  Is not an if...it's a when.

Tick...tick...tick...

Crossing the Finish Line

Coming up to my last round of Chemo

I have to say when I was diagnosed in August hearing I would be undergoing 6 rounds of Chemotherapy over the course of the next 18 weeks...

Seemed like FOREVER.

I'm pleased to say it's almost over.

I'm somewhat ambivalent about it.

I mean I am thrilled to have gotten through it.  So happy it's over.

But it opens yet another chapter in my life.

The chapter of Survivor

Which means follow up appointments every 3 months to check for a recurrence

It means checking off "Cancer" every time I have to fill out a health related form.

Gotta say that is all hard to think about right now.

One thing I have learned as a cancer patient is to strive for 2 words everyday.

BE HAPPY

Life is just too short not to be happy.

Some days it's easy to be happy, other days I have to work at it.

About 26 years ago I was on vacation in Mexico with a good friend

 (I'm looking at you Callahan) 

We ended up surviving a category 5 hurricane.

We learned a lot from the experience

That perhaps taking your passport when you're evacuated was a better choice than say

...your make-up and curling iron.

In the midst of all of the chaos the song 

"Don't Worry..Be Happy" was popular.  

Although we rolled our eyes every time it played, while we were stuck in post hurricane Cancun, it did somehow make us feel better.

I think I can make a connection between surviving a Cat. 5 hurricane and Cancer.

Both are scary and life threatening.

However worrying doesn't do anything but make you feel bad.

 I am a master worry-er

So fighting cancer I learned to quit worrying so much and start enjoying life more

Looking forward to breaking up with my BFF Roberta the Chemo IV pump on Monday.

She's gotten a little too clingy.

Looking forward to being a SURVIVOR.

Thanksgiving...it's more than just dinner

We had a really nice Thanksgiving.  I think we all ate too much, but having all my kids and my sister under the same roof was amazing.  We made and ate lots of delicious food, drank some good wine and laughed quite a bit.

The smell of Turkey cooking will always be a favorite smell for me.

A few days before thanksgiving I had the usual pre chemo appointment with my Oncologist.  She is a terrific doctor, but a bit of a straight shooter.  She can be a little blunt.  I remember prior to my surgery I had said to her I felt lucky " being BRCA 1+ to have gotten to 50 and not had cancer" and she replied "Well, we really can't say that...yet"

Gotta admit I was a little ticked by that response

However 1 month later at my post op appointment I discovered she was right.  I did in fact, have cancer.

I guess as a GYN Oncologist, she'd...uh...done this before ;)

So at my appointment a few days ago, we were discussing the "home stretch" 2 more treatments, another month and I would be finished with my treatment.  We talked about follow up.  I'd be seen every 3 months for the next 2 years, then every 6 months till 5 years and then yearly after that.

But most importantly she told me she felt I would be CURED when I finished treatment.

CURED.

WOW!

And coming from my doctor, who is very detail and research oriented...I was surprised and happy.

I'll be honest in saying I don't completely trust it, as I don't trust cancer.

Am I going to hold my breath before those future check ups and blood work, praying nothing is amiss?

You betcha.

But maybe cancer has taught me one very important lesson:

you never know what's going to happen tomorrow so

Appreciate TODAY.

Because it truly is a PRESENT

Some other things I'm working on

I think 1 and 2 may be the hardest, at least for me ;)

We are Family...part 3 and some other interesting genetic tidbits

Getting back to my family's story....

We've discussed my grandmother and aunts.  But there is another part to our family's story.  Someone who I refer to as "The Mothership," my great grandmother Martha.

We know Martha was "The Mothership" as she had 2 husbands.

My great grandfather was Martha's 1st husband who died at age 33 (noncancer related). My grandmother was their oldest child.

Martha remarried and had more children with her 2nd husband.  A grandaughter from that family died of ovarian cancer at age 49.

Several cousins on the other side of her family have also tested BRCA 1+ for the exact same mutation that I have.

So Great Grandmother Martha was the mothership for this mutation.

Interestingly enough.. Martha lived to be 92 and never had cancer. 

I would love to know what she did right!

I have a pin of hers...but no pictures of her.

My dad had this pin in a box for years.  I still don't know how he came to have it, but I remember seeing it as a young girl and when I was an adult I asked him if I could have it and he gave it to me.  It's not particularly valuable, and I confess I didn't know until recently that Martha was my biological great grandmother.  There had been some disputes around the time my grandmother died that meant my dad didn't really talk about his grandmother very much.

Somehow I think it's fitting I ended up with her pin as well as her mutation.

Some other genetics tidbits

I was lucky enough to attend a Hereditary Cancer Patient Conference last weekend.  

So many new discoveries coming forward in the world of cancer genetics.

Several other cancer genes mutations have been identified. 

They're able to test for these more mutations in addition to  BRCA 1/ 2.

There are numerous websites dedicated to patient registries and how to talk with your family about genetics

such as: www.free-the-data.org

www.kintalk.org

One of my favorite organizations FORCE (facing our risk of cancer empowered)

also has an excellent website, message board and registry.

I am proud to be a member of the Dallas FORCE group.  I've met a terrific group of people from that group.

Looking forward to Thanksgiving with my family.  Our first in our new home in Texas. My oldest daughter is home from college and I love having everyone under one roof once again.  I'll be cooking my favorite meal for the people I love...gearing up for Chemo next week and hoping to be done by Christmas