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 ;).

Teehee!

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 . . . 
16. I DON'T HAVE BREAST CANCER!

Here's to an even more successful year 2!

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.

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!

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.

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!

http://www.active.com/donate/detroitRFTC11/kimmilynn

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.