The Bad Roommate

So hey...it's been awhile!

I have hair and perky boobs.  Life is good.  Very good.

My body is still healing from surgery in some ways, but is starting to feel more normal.

My breast surgeon changed me to yearly clinical exams and I'm only seeing my oncologist every 6 months.

This means at some point in the very near future I may not be seeing a doctor every month or more for some sort of cancer related issue.  As much as I love my doctors I can do without appointments if I'm don't need to go.

I've also moved past the whole cancer a a very scary monster, which it is.  However it's hard to live with that staring you in the face everyday.

So I'm choosing to view my cancer history as a bad roommate.  Yes, we've lived together.  No we don't get along.  But we both have a life time lease on the same body, so we'll coexist and only speak when we have to.

I've had my share of bad roomies.  There was my first roommate in college, who ironed her underwear and had a very loud ticking wind up alarm clock (ok.. it was 1981).  That damn clock used to keep me awake until one night our next door neighbor took it apart and removed a spring.  We all found it quite funny when Helen couldn't figure out what had happened to her clock.  If you're out there Helen...I'm sorry.

Learning to live with my cancer hopefully, in the background isn't easy.  But I'm not giving a bad roommate anymore of my time.  

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

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:

Finding my way back

Still trying to answer the question about what comes next after cancer.  

One side effect of my chemotherapy has been neuropathy in my hands and feet

Basically my feet feel like they are asleep 24/7

Except for when I'm on them for an extended period of time and then

it's painful

So I've been on a quest to see what I can do to get rid my neuropathy and find my new normal

Last week I started physical therapy to help improve my balance and support the muscles in my feet and ankles.

As part of my homework I have some exercises and are supposed to walk daily.

This weekend I went walking with my sister, cousin and daughter at the Canton Trade Days

Which is the mother of all flea market/swap meet/craft fairs all rolled into one!

I figured I might as well shop...and walk.

Shopping with my girls and exercising ...what a perfect combination!

Some other things I have learned about neuropathy after chemo:

It may take up to a year for your neuropathy to improve,

whatever neuropathy is left after a year is yours to keep.

So I'm on a quest to kick neuropathy to the curb

AND

get in better physical shape because I still have one preventative surgery to go.

The preventative double mastectomy and reconstruction surgery.

One surgery (with a cancer detour) down and one to go...

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..

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...

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.

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