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

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?

STOP...go directly to jail...do not pass go

Do not collect 200.00

Ahhhhh

What an interesting few months it has been.

First the jail part.

Well, I didn't actually go to jail.  But I was pulled over for blowing off a stop sign in the very small metropolis of Double Oak,  Texas.  Why was I in Double Oak?  Because I decided to take the long way home from the grocery store to see the miniature donkey farm.

Have you ever seen a little donkey?

SO cute.

Anyhow I got a nice 210.00 ticket for missing the stop sign near the little donkeys.  I've been told by others this is a common occurrence and they probably make a decent amount of money on that particular stop sign.  

My sister and I thought perhaps we could earn the money back by selling t shirts outside the courtroom (which FYI only meets the third Thursday of the month at 6pm) that read:

"I paid 210.00 to see a little ass in Double Oak Texas"

Now for the do not pass go....

Living life after cancer means being hypersensitive to any sign the cancer beast has returned.  Recently I started to experience urinary frequency and pain.  I tried to ignore it and hoped maybe it would go away.  But then realized...yes, this is one of *those* symptoms associated with my cancer.  So I went in for more testing.  

It's a really interesting day when finding out you have a UTI is great news...as it isn't cancer and I'm not neurotic.  

Now the 200.00...

I have been plugging along with filling my breast expanders.  I think I am close to where I want to eventually be.  I have an appointment with my plastic surgeon in a week to confirm and go over the details for surgery.

While I am happy about all of that, even though I feel like I have flotation devices embedded in my chest right now..

There is a great sadness on my horizon.

We placed my mother on hospice care 2 weeks ago.  She has fought a valiant battle against COPD for several years.  I can only hope and pray we can make her as comfortable as possible in the time she has left.

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.

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. 

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"

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!