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. 

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.  

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.

 

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"

Mirror, mirror on the wall...

Who's the fairest of them all?

Hmmm  probably not me.  But things have been moving along in my post chemo world

Firstly...I have hair!  It's coming in nice and thick.  I feel a bit like a calico cat because it is blonde, brown and grey...perhaps I can call it bronze?

My eyebrows and eyelashes are also growing back.  My eyelashes while plentiful are now short without a curl to them.  

I've tried several different mascaras including those with fibers to help lengthen them with no luck.  They simply look like..dead spiders

Not even kidding :(

So what's a girl to do?

Get lash extensions...that's what.

I'm not a girly girl so I'll admit I have never even thought about false eyelashes.  But after talking to a friend, I decided to look into it.

Perhaps use a groupon to a local eyelash salon with excellent ratings.  

I have to say once I relaxed the process was easy and I love the end result

Before:

After:

Much better!

Dancing with NED

I went for my 6 month post chemo follow up appointment today.  Thankfully everything seems to be normal so I am still "dancing with NED"

NED is cancer slang for "no evidence of disease"

The weeks leading up to my appointment were busy and stressful.

I started feeling more anxious about some vague symptoms I was having.

The more I worried, the more stressed I was and then the symptoms seemed to be worsening.

Easy to see how this can get out of control very fast.

I was also worrying alone. Because I didn't want anyone to worry about me.

One day a friend asked how I was...and well, it all just came tumbling out.

She encouraged me to call my doctor and do my blood work early.  

So I did.

My Ca125 levels are lower than they were 3 months ago.

Incredibly good news!

Turns out trying to eat more fruits and veggies was most likely the reason I was feeling more bloated.

So I'll just keep dancing...even my husband likes me dancing with NED

And remember...

"No One Puts Baby in the Corner"

Damn I miss Patrick Swayze!

O Captain, my captain

The past few weeks have been a flurry of activity for me.  A trip to Connecticut to watch my oldest daughter graduate from college, lots of visiting with good friends and some time away from home and work to reflect on the past few years.

In the midst of all that activity I was able to watch The Dead Poet's Society.  I had forgotten about that movie.  Seeing a young enthusiastic Robin Williams made me miss him once again.  But the movie's meaning was as poignant as ever, especially after going thru a cancer diagnosis.

Carpe Diem...Seize the day!

I have been working and trying to get back to some sort of normal after chemo.  But somehow everything seems so different now.  Watching my daughter graduate I was reminded once again why a graduation is called a commencement.  Because it IS not an ending but a beginning.

So maybe cancer works the same way?

Maybe it makes me appreciate life *that* much more?

Perhaps it's a challenge to take the risks.  To love and to live a little more. 

 To fear less what happens if you fail.  

And maybe failing is ok because it will lead you to a better place?

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:

Loss

Over the past the past 5 months I've thought a lot about death.  About what it means to die, and what kind of death cancer brings.  I've taken a cold hard looks at all the things I've accomplished and made a list of all the things I still want to do.  Cancer tends to be a clarifying moment for most people I guess.

I used to think I had plenty of time...
Time to learn and grow.  Time to spend with my family and friends.  But most of all time to live. The opportunity of life seemed endless.  A cancer diagnosis started to make me think more about the boundaries of my life.  That opportunity was still there, but it may not be limitless.  That instead of constantly planning for the future, maybe it would be good to live in the present, TODAY.

Yesterday I discovered a dear friend from high school died, quite suddenly.  Penny was beautiful, smart and funny.  But what I remember most was that she was kind.  Always.  A few years ago we reconnected on facebook and over the past few months she never failed to post an encouraging word to me as I was going through chemo.  I think I heard from her almost everyday.  This past Sunday I had noticed people posting encouraging messages to her, and so I asked her if she was ok.  She had had a heart attack, but was resting at home and feeling better.

The next day she was...gone.

I never realized how much she had touched my life till then.  As the vivacious high school friend to the strong, kind woman she grew up to be.  I will always think of her and know the world was a better place because of her.