No support...

This is the kind of story that needs to be promoted more.  Read the comments.  We get no support from the general public.  People are so ignorant with their incorrect opinions.  Of course I had to add my own comment :)  The Stir - Cafe Mom

Gynecologic Oncologist (Say That Three Times Fast!)

I'm waaaaay behind in posting this, but since nobody reads it, it's fine!  :)

I finally found a lady parts doctor that I like.  Well, I don't really like HIM, but I like how he took me seriously and came up with an aggressive plan.  He's actually kind of a mess.  His office is stacked full of piles of files, which is a little scary, and his waiting room is ornate and full of Faberge eggs and old, tacky furniture, and classical music.  Plus I had to wait like an hour before he even saw me, and I ended up being late for psychology class.  But anyway.

So, here is the plan:  Every six months I get an internal uterine ultrasound (woohoo) and every year I get a CA-125 blood test.  That's a cancer marker test.  It checks the levels of blood cells to see if there is anything abnormal which could signal early cancer.  Its something they usually do for cancer patients in the five year span following treatment.  I also get to enjoy his messy, cluttered, Faberge egg covered office every six months.

He also didn't try to pressure me into having my ovaries removed, or try to scare the hell out of me with horror stories and negative opinions.  He was very cut and dry, straighforward, just how I like my doctors.  Give me the facts and let me deal with the emotional parts myself, thanks.

I have already had my blood test, and never heard anything back so that means I don't have cancer I guess (hooray!).  I'm going to get the ultrasound done next month, at the same time as my MRI.  So that will be a fun-filled day full of prodding and banging noises.  Can't wait.  Oh well, at least I'm super excited to have a solid plan in place finally.

I Ran a 5K!

Over the summer, I decided I'd like to start running.  So I bought a treadmill on Craigslist and downloaded the Couch to 5K app for my phone and got started.  I never thought I'd actually get to a 5k though.  I'm not athletic and I never have been, and I usually don't finish things like this when I start them.  But, against all the odds, I finished this race.  I signed up and ran a 5k at the Susan G. Komen Race For The Cure in Hunt Valley, Maryland.  My time was 41 minutes and 38 seconds and my fastest mile was about a 12 minute mile, according to my Nike Run app.  That's actually the fastest I've ever ran.  I know that's not super impressive time, but I'm happy with it.  Honestly, I'm just happy I finished because ultimately, that was my goal.  Anyway, here are some pictures:

The front of my shirt:

The back of my shirt: 

The finish line:

Me, afterwards:

BRCA In the Media

I just read this article, and it sounds like me, so I wanted to share.  I'm so happy to read things like this in mainstream media to get the word out.  People don't understand what it's like to live with that 87% hanging over your head.  That's a very real number, and when I stop and think about what it means, it terrifies me.  This isn't a joke or a ploy for attention.  It's very real.  This is a great article, please take the time to read it.

False alarm!

Needless to say, I didn't sleep much last night.  That's because this morning I had my diagnostic mammogram and ultrasound.  I got there early because I was so nervous, which didn't help the fact that they were running behind schedule.  Finally they called me back, fifteen minutes past my appointment time.  It must have been National Mammogram Day, because the little waiting area where they keep all the topless women in pink robes was jam packed.  I hate when that happens, because they all stare at me like I'm a freak.  I mean, the room is full of older women with gray hair, gaudy jewelry and wrinkles, and here I am, in my twenties, and looking about 5-7 years younger than I actually am (or so I'm frequently told by strangers).  I know they're all feeling sorry for me because they have to think I'm getting checked for cancer.

Anyway, enough scene-setting.  So they finally took me in for the mammogram, and they had to do some weird angles that they don't usually do.  Also, I learned that the compression plate thingy can come off and be replaced by other ones of all shapes and sizes.  The one I got had an additional plate on it, like a big bump, the size of one of my kids' cereal bowls.  So you can imagine how much fun that was.  Nothing like having your boob squished between a flat plastic panel and another plastic panel the size of a cereal bowl.  It left a weird roundish indent on my skin.

Then began The Waiting: Part One.  I had to go back into that room with the older women, some of whom now stared because instead of gathering my things from a locker, I sat back down, which confirmed for them that I was in fact there for several tests to rule out cancer.  Eventually I was alone, as all of them came and went from their mammograms.  Finally, the radiologist came in and said that I could get dressed and there was no need to do the ultrasound, because everything was fine.  Hooray!

Of course, the minute I change into my shirt, she's back outside of my dressing room.  She decided that she would like to do the ultrasound afterall, after seeing in my file that I'm BRCA1+.  Ah, more stress.

So she took me back and had a tech do an ultrasound.  Between two pregnancies full of complications, I've had about a billion ultrasounds so these I can handle quite well.  I actually almost fell asleep on the bed because I was so tired.  After taking some pictures, the tech got up and said, "Wait here, I want to have the radiologist look too."  Of course this leads me to freak out, because when they do that on a pregnancy ultrasound it's never been a good thing.  Commence The Waiting: Part Two.

After about ten minutes of laying on a flat pillow with my arm raised above my head and that sticky gel running down my chest and into my armpit, the radiologist finally came back.  She scanned things too and said it was all fine, and there hadn't been anything wrong, she just liked to be 10000% sure.  So I guess I should feel good that at least they're thorough.  It's a nice change for someone in the medical field, other than my breast doctor, to be concerned about my BRCA status.

I also remembered to ask about my last mammogram, the one that set all of this in motion.  She told me that there had been a small spot on there, but that its gone now and she can't find any traces of it, so it most likely was due to not having enough compression in that first mammogram.  I'm grateful to know there was never anything wrong with me.

I'm also especially grateful that I don't have to have a biopsy.

A Diagnostic

So here it is.  My very first cancer scare.  I got a blunt little letter in the mail today from the radiology center where I had my mammogram last week.  I'm going to try and attach it to this post, so you can see it.  But it basically says there was a problem with my test and they need to do another one.  I called the number on the letter and they told me that I'll need a diagnostic mammogram on the right side.  The word "diagnostic" scares me.  But not as much as the words "biopsy," or "cancer".

After I processed this information I talked to my mom.  She told me that her second bout with cancer started just like this.  She apparently went in for a routine mammogram and it came back inconclusive. So she went in for a diagnostic, which was also inconclusive.  Because of her history of cancer, they ordered an immediate biopsy, and sure enough, it was very early cancer.

I'm surprised by how not upset I am.  I'm actually taking this in stride, I think.  I mean, it scares me, but I also know that I have an excellent plan ready to go into action at any time, and I know that I'm sort of prepared for this.  Seriously, I have an 87% chance of getting cancer, so it's not like I should be surprised, right?

I've also read about other women who are BRCA+ and have had inconclusive tests or other issues leading to biopsies that came back negative.  So part of me is thinking that's what's happening here.  But another part of me is thinking about the 5 previous years that I've been having exams and screenings and everything has always been clear.  I've never had to come back for additional screenings.

My "diagnostic" is scheduled for Tuesday.  I'm willing to bet that it will take two weeks or more for my results to come back, just to add to my stress.  Cross your fingers for me.

Coming to Terms?

Lately I've been a teeny bit obsessed with finding before and after photos of PBMs online.  I stumbled across this website, and it's got a large variety of before/after shots.  I'm mainly posting it so I can remember where to find it, because I'm positive I'll want to study it again at some point in the near future!

I've never been terribly vain, but I do worry that my new boobies won't look normal.  I'm more concerned with what they'll look like in clothes.  As I like to tell people, it's not like I'm ever going to be a topless dancer, so some scarring won't be the end of the world lol!  And I'm not going to pursue nipple reconstruction, so they're already going to look weird naked I suppose.  That's always an option in the future but for now I'm not too concerned about nipples.

I guess I don't really have a huge attachment to my "girls", but it still seems surreal to be without them, and have them replaced with imposters.  I've read about people going through a mourning period while coming to terms with the surgery they're about to have.  I guess that's where I'm at emotionally.  I don't feel like I'm mourning, necessarily, but definitely mentally preparing.  I told my mom, cancer patients do have one advantage over me here.  At least they don't have the emotional tug of war about whether to do the surgery.  For them, its a necessity.  For me, its not, and it comes with quite a bit of second guessing and opinions from everyone around me.  I hope that comment about cancer patients having an advantage isn't offensive, because its not meant to be.  I know they have it a lot harder than me.  That's why I'm doing this afterall, to avoid becoming a cancer patient.  I don't EVER want to have to wear a pink shirt at a Susan G. Komen walk.  One survivor (my mom) in the family is enough.