Wednesday, November 30, 2011


So, I haven't blogged in a while.  Which is a good thing, because I wasn't allowing my risk to take over my thoughts and my life.

Then I discovered my ex, THE ex's, wife (whom I adore) was diagnosed with BC AND is High Risk only to further learn she is BRCA+.  Talk about close to home.  Then I became curious:

  •  is she on as strict of a surveillance regimen as I am?
  • did her doctors inform her of her options?
  • did they know the severity of the gene?  
Then I became pissed thinking she might not have received the same severity of surveillance that I receive and that all women, every woman, especially THIS woman should receive that same level of attention.

Then I received my pretty pink postcard letting me know they're scheduling January.  And I still haven't called.  Why?  Because I'm scared.  Because this shit never ends.  Because every once in a while it feels better to put my head in a hole and act like I know nothing.  But her response echoes my reasoning for testing even if my risk is lower:
Knowledge is power and as scary as it is being in the driver seat beats being taken down the road by cancer.

Sunday, July 10, 2011

Surveillance is a lot like Prostitution. . . .

At the end of the day we're both paying someone else to fondle our goodies and keeping our fingers crossed for negative test results ;).


Monday, June 20, 2011

Update: Surveillance-versary!

So, I'm a big fat loser.  My surveillance-versary was June 10th!  I guess in the midst of not obsessing over my high-risk, I stopped thinking a little too much about it!

Here's the other part I realized:  I haven't met a single goal I laid out for myself since my initial meeting with Heather.  Not a one.  I haven't lost weight. I haven't stopped eating red meat. I didn't start taking vitamins. I didn't change my diet. I didn't drink less . . . well, let's not get ahead of ourselves here, I never did promise that one!

So at the risk of being accused of having a defeatist attitude (again) here is what I have accomplished:
1.  I had one Mammogram
2.  I had one MRI.
3.  I had one Biopsy.
4.  I performed at least one self breast exam each month (probably 2 realistically)
6.  I tested for the BRCA gene
*these are important because early detection saves lives
7.  I told my story.
8.  I started going to local FORCE meetings.
9.  I met other young, high risk women by telling my story.
10. I finally walked in a breast cancer walk that I raised money for
11. I tried to reach out to my extended family about our risk
12. I had researched enough and learned enough to help my sister begin her journey.
*these are important because many women who are high risk do not know it, or do not know how to proceed
13.  I quit smoking (I hope, it's only been a month so I'm afraid to brag).
14.  I limited my weekly red meat intake, for the most part:).  Hey, I'm a sucker for a cheeseburger!
15.  I joined a gym and partake on occasion.
and most importantly . . . 

Here's to an even more successful year 2!

Saturday, June 18, 2011

It's my Surveillance-versary!

So, I just realized, it's nearly July.  July to many people is Independence Day, summer vacation, barbeque's, camping, 90 degree weather, boating, ridiculous air conditioning bills.  To me July is my annual mammogram. 

My annual mammogram also marks the completion of the first year in my life as a high risk woman.  So I survived year one.  With me I take at least 12 self breast exams, an uninformed negative test result, one tiny scar on my right boob, a lead marker near said scar, nearly $1,5000 in related bills and enough tears shed to flood the entire Metropolitan area.

And, because my first MRI (aka, January) came back with an area of suspicion that needed to be biopsied, I need to run the MRI again.  Hopefully on the same day.

The average person may not think this deal sounds so bad; 2 tests a year, 6 months apart and a doctors office visit in between.  What the average person doesn't realize is I finally feel like I got my head back on straight again.  I don't think about my status weekly, daily, hourly, any longer.  I wasn't researching everything boob related.  I stopped dreaming up my eventual PBM or RX.  I stopped practicing the speech I would have to give my friends, family and co-workers. 

But now.  Now that July is staring me straight on, I feel the beginning pangs of dread, of terror coming back.  They get caught in my throat late at night.  They subconsciously make my hands linger longer over my breasts suspicious of every change.  They haunt me.  They whisper to me.  They follow me.  It's a disease you can't see, that dread.  And it's back, just like it promised.  Six months later.

Wednesday, May 25, 2011

Update: Race for the Cure, Walk for the Fundraiser

At Eatser dinner I told my dad that I was walking in the Race for the Cure and he asked if he could join me.  This meant so much to me.  Our family history of breast cancer is on his side, and his mother was a very proud survivor in an era when reconstruction was never an option, mastectomies could be compared to torture and men dominated the medical field.  However, it meant the most because it is the most personal thing my father and I have ever done together.  His eagerness to participate and be involved was really touching.

So the weekend comes.  I only raised $210.00, but it's about $160.00 more to stay here in Detroit than without me (75% of Race for the Cure proceeds stay in the city of the walk for local treatment and surveillance help).  I wanted to make Friday and early night, since I had to be up so early Saturday so the roommate and I went out for Happy Hour.  Can you imagine my surprise when I turn the corner and my sister from Florida is sitting there?!?!  She wanted to be a part of the event and together the three of us conquered the 5K (although walking in Detroit with 40,000 other participants, we likely walked at least 5 miles!).

Surveillance and high risk is not a blessing, but I still could not ask for more!

Friday, April 15, 2011

Being on the low end of high risk

Sometimes I really feel like I don't belong.  And before you reassure me that I'm a part of the high risk community, hear me out (because this isn't that post where I say I feel fat because I want everyone to reassure me I'm skinny and beautiful).

I attended my first FORCE meeting locally.  And it was lovely.  The women were lovely.  The conversation and exchange of ideas was lovely.  Aside from all of us facing cancer head on, it was lovely.  I was the only(known) uninformed negative there.  With the exception of one woman preparing to be tested, the rest of the women were positive and either completed surgeries, were scheduled for surgeries or were preparing for surgery.  Now, I know surgery isn't for me, right now.  The CGC (who was there and who also did my test) said it best: 
The difference between 25% and 85% risk isn't the path we take, it's how much time we assume we have to move along that path. 
I've realized that being negative is a blessing in many ways.  My family history wasn't as significant as that of the other women in the room, and I have time (cross your fingers, knock on wood, and whatever other heebie jeebie stuff you do for good luck) to make decisions.  I'm taking a proactive approach to my cancer screening and I'm doing everything right.  And I'm not complaining, well not usually.  I'm grateful to be of todays generation and not my grandmothers and I'm grateful for all of my Previvor Sisters.

But sometimes it's just downright lonely.  Women who have tested positive for the gene forget what it's like to be in that unknown but surveying stage.  And women who aren't high risk aren't being screened like I am.  Hell, at my age, the only screening my peers receive is at their Ob/Gyn appointment.  Sometimes I feel like the low end of the high risk community is a silent voice, a forgotten battle because most of the women in this recognized community are running a sprint, and well, us uninformed negatives are in it for the marathon.

Wednesday, April 13, 2011

Race for the Cure, Walk for the Fundraiser

Sadly, the 3 Day is out of reach this year.  I'm bummed, but glad I recruited some friends and family members to walk with me at the 20th annual Susan G Komen Race for the Cure!

Check out my fundraising page.  I give Be Bright Pink and FORCE some love too!

Tuesday, March 1, 2011

How to explain your scars

Approximately every other month, every two months, someone posts on FORCE about how to explain all of this when you're dating.  When do you tell, I think is the biggest question for everyone who is single and high risk.  I think surgery or no surgery, anyone with scars faces the question even more.

So when do you tell?

My breasts have always been a large part of my identity, my transformation to womanhood, how I see myself.  Therefore, to me, my biopsy scar is extremely noticeable.  Granted, it's tiny in size, but in typical form, is raised, and definitely noticeable.  So do you say something in advance of the observation or wait and cross your fingers?  I dont' know.  How do you explain it when you do choose to?  What do you say?

And I don't even have to answer that yet LOL.  But I do know my biopsy has changed my social slash dating life.  How much would it change if I were BRCA positive and had more than a biopsy?  How different would my choices be if I hadn't had an biopsy or gone through all of this.  I guess we'll never know.

Monday, February 14, 2011

How to celebrate Valentines Day when you're Single and High Risk for Breast Cancer

Step 1.  Live with your best friend

Step 2.  Have your roomie make your favorite quiche for dinner

Step 3.  Pick up a bottle of wine very aptly named A Few Good Men to enjoy

Step 4.  Enjoy 

Step 5.  Once you're finished with A Few Good Men and ready for bed, Self Breast Exam!  LOL

I just realized tonight is my monthly night to SBE.  Looks like the girls will be getting some love after all :).

Saturday, February 5, 2011

You've got boob mail!

So today I finally organized my mail.  My boob mail was separated into four categories:  hospital bills, Myriad bills, insurance statements and prescriptions/information.

Just an FYI for people who think women are crazy who ditch surveillance for a PBM.  This is just the envelopes that all of my boob mail came in for the last 3 months. 

Let me remind you, this is just a pile of envelopes - the mail has all been removed (and I've already organized and thrown away the first 3 months of envelopes and mail).

Wednesday, January 26, 2011


Alicia Keys sings the line so beautifully: 
'Cause I'm a Superwoman, yes I am, yes she is, even when I'm a mess, I still put on a vest, with an S on my chest, oh yes, I'm a Superwoman.'
Truer words couldn't be spoken about women who wear their scars on their chests, proof that they too are Superwomen.  Daily, I look down at the pysical remains of my biopsy.  One straw-sized healing incinsion (soon to be scar) and a half dollar sized bruise.  Had either of these appeared anywhere else on my body, I probably would have never noticed, and if I had I would have no idea how I did that (I'm not exactly graceful).  But these two circles, these two tiny spots stare back at me, daily.  A daily reminder of Biopsy One. 

These two little spots, markers, alterations in my physical being change the way I see myself.  They change the way I feel about myself.  How will I see myself 5 years from now, 10, 20?  How many spots, markers alterations will I have then?  How will I feel about myself then?

They make me wonder, how many biopsy holes will I acquire in a lifetime?  If I make it through this life cancer free, how many tokens of surveillance will be left behind?  How different will my chest look on my last day even if I never have cancer, which is of course the best case scenario.  I contemplate buying a snug white shirt, and placing some sort of marker on my biopsy spot and recording my history externally like the pathologists mark my history internally.  A Previvor Souvenir if you will.

You see, that's why Previvors have a term, have a community, why our prevention choices don't matter in the long run (surveillance vs mastectomy).  We make not be sick, but we do have the scars to prove it.

Thursday, January 20, 2011

Benign: My New Favorite Word

Heather called me today at 9:15am (she really needs to stop calling at the same time she called with bad news, it scares me).  She left a message this time though saying she had good news:  woohoo!  After a bit of phone tag, she explained that my preliminary results all say the tissue was benign.  Because this is just the prelim report, we have to wait for Radiology to confirm they tested the right tissue, and determine whether or not I will require some type of follow-up.

She will share more with me later, however, I know the tissue was hylanized fibrosis adenosis tissue.  It was not DCIS or invasive!  More woohooing here!  However, I have no idea what I just said really either:).

Here is what I have figured out:
Hylanized:  gassy homogeneous material within a cell
Fibrosis:  abnormal tissue as a result of inflammation
Adenosis:  abnormal development of glandular tissue

Now, lets see how well Google passes when I find out what the heck is really going on.  Tonight in celebration, I will attempt to sleep on my sides, bruises permitting of course.

Monday, January 17, 2011

Let me tell you a little story called "Brr"

Once upon a time I had a friend.  Said friend very quickly became a best friend.  Sadly, for reasons totally unimportant to this blog, said friend and I haven't spoken in months.  Until today, when he wished me luck on my biopsy tomorrow because another friend told him about it.  I'm hurt, angry, and betrayed.

But I realize that I'm hurt, angry and betrayed because clearly, the tattletale has no idea what I'm going through.  I mean of course I'm nervous about crawling back into the tube, I'm nervous they won't use enough local to numb my full boob, I'm nervous about a needle being poked into the 12 o'clock position of my right breast and ABSOLUTELY I'm nervous about what the tissue sample they draw will say about me.

But best case scenario in this situation is that the tissue is fine, and in 3 months I have a clinical, and then in 3 months I have a mammogram, and then a clinical, and then an MRI.  Tomorrow isn't just one test for cancer.  It's not just one biopsy.  It's one of hundreds of tests for cancer that I'll endure.  It's one of probably many biopsies.

Worst case scenario is its cancer.  And I face my ghost face to face.  But either way I don't rid this.  Truthfully, tomorrow is the just another ordinary day in the life of a high risk breast cancer patient.

It hurts because this isn't one day.  This is my life.

Friday, January 14, 2011

Where's the what to expect when you're not expecting handbook?

And no, I'm not talking about babies.

Yesterday was my MRI.  Hated it!  Although the technicians were gems and deserve Jennifer Anistons salary, in my opinion.  They weren't kidding about the IV making your mouth taste like metal - blech!  And if anyone wants to shoot over any tips on how the hell to sit up after you're done without ripping the IV out of your arm, I would appreciate it. 

When discussing the results with my roommate, I told her I expected a letter in a couple of weeks like I did with the Mammogram stating all was clear.  That's when the unexpected happened.  Heather called at 9:15 this morning to discuss the results and offer recommendations.  Duh, duh, duh. . . . .

So clearly, I knew all wasn't honky-dorry.  I just spoke with her and there is a 7 mm linear mass area of enhancement at the 12 o'clock position on my right breast.  Ain't that a bitch.  There's a spot in my right boob that I will obsess over for the next week and it's too damn small for me to even feel.  Well, I have an appointment next Tuesday for a wire-guided MRI biopsy.  Yup, back in the tube I go.  I'm going to go study up on my biopsy and I'll share anything I learn with ya. 

Thursday, January 13, 2011

MRI Day . . . Glad they're not testing my nerves!

In a couple of short hours, I will be lying face down, girls hanging, in a loud banging tube.  There will be a tinted IV in my arm, highlighting my blood stream and more pictures of my beasts will be taken.  If breast cancer previvors, patients, and survivors were paid per picture, we'd make Jenna Jameson look poor!

And today I'm really nervous!  I can't come up with a code name for this test;  that's how I know I'm really nervous- I can't even make fun of it.  I call my mammo's the Monster Mash, my clinicals Tuning in to Tokyo, but can't find anything witty for this one. 

Deep down I know I'm fine.  I SBE every month, my mammo came back clear, my clinical exam last month was all clear.  But at the same time, if on the off chance something wasn't fine, if there was a tiny spot of trouble, this would be the exam that would most likely find it.  I keep telling myself, I'll be fine, but if I was really fine, I wouldn't be doing this at 30 right?

PS - my dear friend with Cervical Cancer has her surgery to remove the cancer, and some of her cervix tomorrow morning.  I ask of you to do whatever spiritually moves you to ask for health, healing, and fertility for her.  Thanks xoxox

Tuesday, January 4, 2011

Breast Cancer 3 Day

I have raised money for The 3 Day twice, the Race for the Cure once and have never been able to walk for one reason or another.  Therefore, I am super excited to announce that I will be flying down to Tampa Halloween weekend to walk with my sister. 

While Breast Cancer has always been close to our hearts (get it?!  LOL), this year it has been us in the doctors chair.  While unlike our grandmothers, we've been lucky thus far, it just seems right to go for it in 2011 and even better to do it with my sister and best friend.

But we can't register until we find a team name.  I know some people think it trivializes the cancer, and I empathize with any survivor who feels that way, but I disagree.  There is nothing trivial about raising $2,300, flying states away, sleeping in tents and walking 60 miles, after a year of clinical exams, mammograms, and MRI's to help hopefully keep us from walking in the shoes of our predecessor. 

So help!  Boob puns are encouraged!  Here is what we have so far:

Gaga for Tata's
Underwire Previvors
Grammies Mammies
Baby Got Racks
Genetically Twisted
Rack Stars

I was hoping to come up with a pun on SBE but can't!  Darnit!
(I did poach a couple from other cities team names, guilty as charged!)