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

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.  

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"

I can see clearly now the rain is gone

I am now 3 months post chemo and just had my first 3 month cancer follow up.  Thankfully my exam and lab work all came back within normal limits.  So a huge Yeah on that!

My neuropathy seems to be diminishing.  The physical therapy, massage therapy and time seem to be doing the trick.  I am back to work full time and it is Spring in Texas which is just glorious

That means warm temperatures and Bluebonnets

My hair is finally coming in. I had to laugh when I realized the cowlicks I have, that my mom used to worry about when I was a little girl?  Are still there!  Anyone ever dealt with a double crown cowlick?  I'm sure it means something in some culture somewhere.

Here you go:

But at least it's not all grey!

A celebration dinner with my sister and friends to commemorate her birthday and my great 3 month check up

I have been struggling a bit with survivorship (that's what it's called by the way)

Because the anxiety of follow up exams and testing always reminds me cancer lurks in my background.  So I made a deal with myself.  I have NO control over a recurrence. NONE.  I do have control about what I worry about.  So I will not give cancer even more of my life by worrying about it.  I'll keep my appointments, good attitude and try to maintain a healthy lifestyle.  I will enjoy my family and friends..and I will admire the bluebonnets.  

But I will not let cancer anxiety control my life.

And you know what?  I slept like a baby the night before my check-up.

True story.

And since I am (proudly) a native Kansan, this seems appropriate:

Letting go

Tomorrow I am having my port removed.

While my minion has served me well in kicking cancer's ass, my doctor feels I'm cured and no longer need it.

So Yeah! 

Out it comes!

I have to confess I am a little ambivalent.

I feel like my port removal is like tempting fate for a recurrence 

BUT

I need to remember my port does not have magical powers to prevent cancer.

So out it comes tomorrow...

And I have some nice platinum blond (grey) fuzz growing in..

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...

Hammer time #6...

Last One!

I said a happy farewell to Roberta yesterday!  She served her purpose but was getting a little too clingy and yesterday was even hogging my TV.

SO buh-bye Roberta!

I had a late Chemo appointment, I wound up finishing up at 6:00pm and was the last patient in the cancer infusion center.  When you do your last round of chemo you get to ring the bell signaling the end of treatment.  Since I was the only patient in the center I thought it might be quiet...but luckily I had 2 of my favorite and loudest chemo nurses standing by to make sure I was properly cheered as I rang the bell.

Gotta love my chemo nurses <3

Ringing the bell and loving my bald head...or trying to.

I hear hair regrowth starts in the next 3 weeks...and that's a whole new ballgame!

I hear it'll be curly and grey...so pretty!

or NOT.

I guess we'll see!

My kids, mom and sister plus our 2 dogs are here for Christmas.  So happy to have them all under one roof in our new home for the holidays.

I wish you all a much happiness and health in the new year!

I have decided to continue my blog to talk about life after chemo, follow-up appointments and my BRCA journey.

So stay tuned...

FOCUS

I'm starting to look at what comes next after cancer treatment.  Which is such a happy thing and yet scary as well.  When I was diagnosed back in August, all the plans I had for the next year went out the window.  We had just moved to a new home and I had been accepted to a new graduate school program.  All of that needed to be put on hold.  If I'm being honest my thought pattern felt a little like this:

Focused on chemo and cancer...yes, but in a sickening and dizzy way.

It was a time to batten down the hatches and get ready to fight.  Which I did.  My family has as well. 

SCARY as hell.  And yet, coming out the other side it has changed me in a way that I know is going to make me a better person.  

I feel a little like George Bailey in "It's a Wonderful Life"

Cancer may have been my "Clarence"

A wake up call before it's too late to appreciate all the good things in life without all the insignificant crap that really doesn't mean anything in the long run.

Looking forward to a new focus and hoping when life becomes crazy again

 (as I know it will) 

I remember to focus on what's really important 

The people who really matter and let go of the rest.

Here Comes The Sun

This has always been one of my favorite Beatle's songs

Coming out my Chemo haze and the sun seems to be joining me.

Lots to look forward to:

The holidays with family

New work digs

My mother and daughter here for the holidays

and only 1 more Chemo Treatment to go!

Today, going to soak in some sun, and maybe have a lunch date with my husband,

All good!

Hammer time -Chemo #5 and some random thoughts about having cancer.

Chemotherapy today, treatment #5 

Pleased to say it well, and I'm home feeling ok, just a little tired.

In my cancer center there's a main waiting room.  Where patients wait for lab work, chemo and to see physicians.

Before I had cancer I went to this waiting room to wait for my blood work and see my doctor.  This waiting room is a bit of an eye opener.  Since you see all different types of people.  Some are obviously sick, others bald but look ok, and the rest look healthy.  I distinctly remember being there before my diagnosis and thinking "This is a club I hope to never join"

yeah, I did

Well guess who's now a card carrying member?

ME!

Over the past 4 months I've learned how to pace myself, manage my time and be more positive.  Chemo sucks.  But when I sit in the waiting room now waiting for chemo, I think I am more relaxed then I was before I was diagnosed.  

I've lived one of my "worst case scenarios" and lived to tell the tale.

One thing I have noticed is that I am always reluctant to tell people what kind of cancer I have.

Frankly, it's none of their business, but more importantly people seem to look at you like ..you're already dead.

Ovarian cancer has quite the reputation.

Rightly so.

I confess I used to think that way too.

But now I know better.

My cancer was discovered early, so I have a good prognosis. 

AND even those 

who are diagnosed with advanced disease are living longer and may consider it a chronic disease, where you go in and out of remission and need further chemo.

Who knew?  

Well now I do, and you do too.

One of the other pet peeves I have about cancer is baldness.

Oh it's hard, but what's really hard is it screams

"I HAVE CANCER!"

To everyone...everywhere.

I'm a pretty open person with my friends and family.  Even co-workers as we work closely together. 

But a month or so ago I was at a work related class and was accosted by a woman who was a breast cancer survivor.  I know her heart was in the right place.  But pinning me to wall and asking loudly if "I was her SISTER" 

was uncomfortable for me and everyone else in the room.

Some bald people hate this kind of attention even more.

So tread carefully

The people I do enjoy are those who quietly come up to me in the grocery store or hobby lobby and say in a quiet voice to "Hang in there, it's going to be ok, your hair will grow back, I'm X years out and doing fine"

And then leave.

I kind of think of them as angels

reminding me, I'm going to be ok.

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

Perspective

Now that I'm a week past chemo I'm starting to feel "normal" again.   On my way home this evening I started to reflect on how my perspective on aging has changed.  Last year when I turned 50 I started seeing myself really ...age.  Ok, so I looked good for 50...but damn I was 50!  With that came skin changes everywhere, hair where there wasn't hair before as well as assorted aches and pains.  I admit it freaked me out.  I mean in my head I was still...like maybe ...29?  ish...

But cancer has given me a WHOLE new perspective on aging.  Because now I am just so happy to have reached 51 and more importantly will reach many more birthdays to come.   I have happily earned every single laugh line, laughing with my kids and husband.

Grey hairs bring it on! I've lived long enough to enjoy them.  Wrinkled neck and sunspots from being outside enjoying the sun and my family.  I'm in.

Because life is for living.  

Or as Auntie Mame says:

It's Beginning to Look A Lot Like Christmas?

As I am starting to come out of my chemo haze, I'm noticing the world is starting to change.

First off, we are in very cold weather for Texas...30-40's

Brrrrrrrrr

Secondly, holiday lights are going up 

and lastly my favorite oldies station is now ALL CHRISTMAS MUSIC until December 26th.

Did I mention it is November 15?

I will be the first to admit my initial impression was:

Because I used to have a firm rule about eating Thanksgiving dinner before digging into Christmas. 

HOWEVER this year is different.

As I was listening (and grimacing) to Silver Bells on the radio this afternoon I realized.

When Christmas arrives....

I will be finished with CHEMO.

Like finished...done...no more.

SO 

I'm going to get in the spirit..

Do you see what I see?

Perhaps an end in sight...

and so much hope, love and laughter.