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

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.

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. 

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)

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...

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:

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.

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..

Patience Is a Virtue

I am almost 3 weeks out from my last chemo treatment.

For the past 4 months this is the day I'd be getting myself ready for yet another round of chemo

and all the yuck that comes after.

So I am very thankful to be finished with all of that.

However 

I am impatient to be back to normal again

which means

HAIR!

No neuropathy (numbness/pain) in my hands and feet

Better stamina

Decreased anxiety

Right now, none of the above seem to be happening very fast and I have to say while it may be unrealistic to expect all the above

I do...

And I want it NOW!

Somewhere in my mind there's a very small voice that keeps telling me maybe I will have to adjust to a new normal

And I am not liking that at.all

My Favorite Escape

No it's not Hawaii, Italy or the Caribbean

Although I do love all those places.

My favorite escape is a good book.  

As my chemobrain is improving I'm able to read again.

This makes me so very happy!

One of the ways I've always coped with sadness or hard times is by diving head first into a good book

One of the hardest parts of Chemo was the inability to concentrate enough to read.

As the chemo leaves my system for the final time I'm having a great time catching up on all my reading.

Whether it's a great thriller, a new Stephen King book, a biography or even cook books, I have always had my nose in a book

As far back as third grade I used to walk home from school reading a book...and often ended up either off course or walking into a things because I was so engrossed in the story. Leaving me to explain why I had a bruise on my forehead from walking into a tree!

Many of the stories and characters still live in my mind.

I've also learned so much from books.  Fiction, Nonfiction, Historical or pure Chick-Lit.

It's all been good.  

So have you read a good book lately?  

I have :)

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...

Breaking Bald

When I first discovered I was going to be receiving chemo, one of the first questions I asked was "Will I lose my hair?"  The answer was yes and 3 weeks after my first infusion of Taxol, I started shedding massive amounts of hair.

Now I have been bald for 3 months.  I have a collection of hats, scarves and a wig.  Until recently I wore them all whenever I went out of the house.

Scrub hat for work

Partial collection...and yes a large miralax bottle makes a fine wig form :)

But truthfully I hate wearing them.  They are hot, sometimes itchy and they make me fidget.  I've always been that way, you can ask my mother...if it was itchy I'm not wearing it.  (yes, mom, I know you are nodding in agreement right now)

So lately I had been pondering the question of why am I covering up the bald...or as my son calls it #ChromeDome?  Obviously men wear the bald all the time and no one thinks twice.

Who loves ya baby?

  I thought about when I saw women bald...did I notice them? Truthfully yes, yes I did.  Was it offensive? no, if anything I thought they were brave and most looked good bald.

So why am I still covering the bald?

Some of it is a lack of femininity.  But most has to do with being bald in public is a bit like announcing to the world "I have Cancer".  It makes me feel vulnerable.

Then I realized that a baseball cap, scarf or wig, on my bald head is really NOT camouflaging the bald ...at all. Pssst people can tell....

So after polling some friends and getting up the nerve I have been in public all week

stark...raving....BALD!

And I'm excited to report...no one cared.

And it felt so good! 

LONG LIVE THE BALD!

Well at least until I have some hair..

(and I love the fact my glasses cover my lack of eyebrows!)

And a little BRCA humor...