It's Not Enough...

This may be a bit of a ramble.....

BRCA testing. I don't think I like the idea of making BRCA testing mandatory, as has been in the news recently.  And no, I haven't read every article or every word or every blog about it. It was mentioned to me in 2010, that I might want to consider it. I am the only person in my entire family to have a cancer of any kind, that I'm aware of.  And I thought about it.  Did some research.  Here's what I decided.  I'm not going to take the test. I don't want or need to know.  Why? Because, just because a person tests Positive for the BRCA gene, it's not a guarantee that they will get breast cancer.  And if a person tests Negative for the BRCA gene, it's not a guarantee that they WON'T get breast cancer.  And I do understand there are no guarantees in life. But me being me, a positive BRCA result is going to wreck the entire rest of my life, even more so than bc has already, and then I'll have to consider whether or not to have all kinds of other surgery to remove this or that. When there's no way to actually KNOW for sure what's going to happen. It's not very scientific, but it's how it is for me. And It's Not Enough.

"It's haunting you from inside now..." 

So I'm better off just being vigilant with trying to stay as healthy as I can, and see my oncology team as recommended and treat whatever may come up, just as I did in 2009 - 2010.  So no, I don't want it to become mandatory testing.  I rather like having a choice.  

It's Not Enough to get your annual mammogram.  I hope you'll click this link and read this article.  Perhaps the mammogram isn't the "life saver" so many celebrity breast cancer survivors & others tout it to be.  When they say "A mammogram saved my life" or "I got lucky, now I'll live to see...."  while still so early on in or after treatment. How can they even KNOW that? Metastases just plain ol fucking happens...regardless of stage of diagnosis, regardless of treatment chosen.  It just appears to be random. The fucker. I'm not so sure I'm ever going to get another mammogram. It's Not Enough. 

And apparently the people around a survivor will sometimes grow weary of hearing about the anxiety that can unnerve us breast cancer people, especially when a doctor's appointment is coming up. Although they mean well and encourage us to "be positive, be happy, get on with the rest of your life! It's over now!" It's Not Enough to have "apparently" beat it.  Let me refer you to the link above.  

It's Not Enough to slap a pink ribbon on something, or turn something pink.  It's just not. Because all this pink is not really helping anything.  There is no more need to push awareness about breast cancer.  All this pink merch is doing is making money for the merch makers. Sure, some donations are being made, but how much really? And to what organizations? When you get asked at the cash register if you'd like to "donate to breast cancer", ask the cashier to which organizations the funds will be donated. (Like my friend AM did.)  I dare ya. Rather, why not make a cash donation to Stand Up To Cancer, an excellent organization that is working hard to fight ALL cancer.

And again, I get both sides of this pink issue.  I know that some, yes, even some stage 4 folks, love this pink time of year and proudly wear the ribbon, not just in October, but all year long.  They are reminded of how far they've come and are reminded to be thankful, so some have told me.  And then there are so many others who are just put off by it.  It's a terrible reminder of the fear...the pain....the uncertainty....just all around badness. 

But the Pink Machine is in full effect, making most believe it's just one big pink party...that it's all "Yay survivors" and "Yay for boobies" or tatas, or second base....(I actually like to refer to mine as boobies..just sayin.) No regard for those who are really living with and in treatment for the rest of their forever.

I think I'm going to once again start sporting the pink ribbon myself...It DEFINITELY gets attention, definitely sparks conversation.  May be the perfect opportunity to share my own brand of "awareness".  

What IS Enough? 

Find the CAUSE! Find the CURE! Find out how to PREVENT it!

It's not Enough
Broken in two
It's not Enough
Speaking the truth

Don't Ask Me...I Don't Know.

So l am gettin some emails & messages from other awesome survivors lately...& it really makes me feel great that these ladies are encouraged by my blog & stuff.  I love when I can help others feel supported, or ease fears, or just help another feel like they're not alone. Glad to be of some help, & in so doing, it helps me as well. *waves to new followers & subscribers* :)

But sometimes, I get asked about certain bc stuff that I just have no idea about.  Things like tumor marker test numbers & onco score.  I probably should know some of the stuff, like the onco score, but I just don't.  I don't even know if I've even had the test that determines the stupid onco score.  Or maybe I have & my doctors know me well enough to know that I don't need to know...which would mean it would have to be a bad score then...right?  Or maybe not. Or maybe I do know, but don't remember...I don't know.

And then there's the tumor marker test.  To my knowledge, I've never had a tumor marker test done.  My Oncologist (and many many others) just doesn't like the tumor marker test for bc.  So he doesn't do it. I'm fine with that.

I'm fine with not knowing these things because I just kinda feel like it really doesn't matter. The treatment I had was pretty much throwin everything the docs had at this cancer bullshit....pulled out the big guns, magic bullet, kitchen sink...everything. So really, at this point, what does it matter? 

One of the things I do know about my bc is the Proliferative Index.  My Proliferative Index was high. Crazy high. And sometimes I wonder if this Proliferative Index has anything to do with that Onco Score.  Like if the PI is high, wouldn't the OS be high too? I don't know.  And I'm not gonna be askin anyone either. Cause I don't need to know.  And if I sit and think about everything I do know about my bc, all the things together,  it totally freaks me the fuck out. So I don't do that shit anymore.

Why all this cancer convo, nerves & freak outness? Well, cause the skeery flurry of oncology type appointments looms ever closer on the calendar.  Next week I go to have the blood drawn for Dr W...& then have to wait a week to see him & find out if I'm still good. (It used to be done all at one time...this waiting is the only thing I don't like bout the new location.) And the week following that, is the visit with the awesome surgeon Dr V.  Normally I'm not so nervous about seein him, cause I'm armed with the knowledge that my mammogram is fine.  But this time, I'm not freshly squeezed...so there's that. And since this stuff all begins next week, I am now a total hypochondriac & master of psychosomatics.

There's a shocker.

Ok, so still tryin to decide on the first Reel Rants episode.  What I'm thinkin is, have the camera follow me around as I go to these appointments & stuff.  Tape as much as the doctors & hospitals will allow.  And then do a segment on good food or something.  What do y'all think? I'm totally open for suggestions.  At first I thought the show was just gonna be about me goin off about stuff that pisses me off, but decided it probably wouldn't be very much fun to just sit & watch me bitch about stuff.  Ask O...he'll tell ya.

Anyway....even though I do seem a bit shaky at the mo, please do keep writing to me & commentin & stuff.  I think when I can reach out & share with y'all back & forth, it really is helpful to me also & boosts my confidence & courage & stuff, & hopefully is helpful for you, too.  We're in this together, you & me. So again, thanks everyone who regularly reads, follows, writes to me, Liked on Facebook, Follows on Twitter & comments here & stuff. 

xx

It's All About The Benjamins Baby...

This. Is. Fucking. Disgusting....Period.

Got $700?

Celebrate. Remember. Fight Back.

So, we did the Relay for Life again this year.  It was moved indoors due to stormy weather in the forcast.  It was a great event.  We didn't stay all night though.  Maybe next year.  

I liked the shirt for this one better than last year's too. 

Celebrate. Remember. Fight Back.

 

I still can't believe I own a Survivor shirt.

Sooooooo, I do have much to celebrate.  Especially over the next couple of months.  My birthday is comin up.  I didn't used to care about celebratin that, but I sure do now. I'm also finally takin a vacation trip back home to Savannah.  Should be tons of celebratin while we're there! ;)  My 2 Year "cancer-free", or rather, "No Evidence of Disease" (docs don't like to say you're ever "cancer free" anymore) is in July.  I'm told that's a major milestone in surviving breast cancer bs.  The docs all say that most of the time, if it's gonna come back, it will do it sooner rather than later...most times within 2 years. So yeah, might wanna have a bit of a celebration on that day.  

Yes, after talkin with Dr W, & after a very good chat with Dr V, I've decided to go ahead & move forward with the stupid ass Genetic Testing.  I really should know if I have the BRCA1/BRCA2 gene.  It's doubtful that I will test positive.  But yeah, kinda need to know.  Cause if I do, I will have to Fight Back in the form of more surgeries.  But then I will have reduced my chance of having to go through future treatments dramatically.  Of course it's no guarantee.  But if I'm positive & do nothing, chances are pretty certain that I'll get it again.  And I think I'd rather Fight Back with a preemptive strike.  Yeah.  Kinda don't wanna do the chemo/radiation thing again.  So gonna be lining that up to be done. 

So that's the plan for now.  Celebrate.  Remember. FIGHT BACK.

*Insert Witty Title Here*

Yeah, been needin to do a "real" update for awhile.  And while I don't think I'm the greatest writer in the world, I just haven't felt very creative lately, even though there's been lots goin on to blog about.  So I'll just put it out there...the what's what with us lately.

First, Dr W said the blood looked fine.  And I finally learned what the tests he orders are, once & for all.  And the one I was most nervous about, isn't even being done.  So there.  No need to be skeered of the Oncologist check up appointment anymore.  It's the chest X-Ray I can now have the freak out over.  Which I'll need to get done before I see Dr W again in August.  Yep.  So every 6 months, for I dunno how long, I get the chest X-Ray & hope it remains clear. 

He also wanted to discuss genetic testing with me.  You know, to see if I test positive for the BRCA1 & BRCA2 genes.  I have mixed feelings about doing this.  I get that, since I have had breast cancer, it might be a good idea to get the test done.  A positive result would indicate that I'm at an increased risk of getting it again, or worse, getting ovarian cancer.  So then I could take steps to lessen that risk...double mastectomy, ovaries removed. But even then, it's not a 100% guarantee that I won't have to deal with cancer ever again.  Also, a positive result is not a 100% guarantee that I WILL get cancer again.  And then there's the family to consider.  A positive result would then behoove the women-folk in my family to undergo testing as well.  On the flip side, a negative result is not a 100% guarantee that I will not get cancer ever again.  

Soooooooooooooo, what to do, what to do?  I'm kinda leaning toward not doing it.  I'm thinking that, if the gene mutation was in my family, with all the women that are in my family, I really think there would be a suspicion by now.  But seeing as how none of these awesome women in my family have even had so much as a cancer scare, I seriously doubt the gene is there.  But then again, I did get breast cancer, with no family history of it.  So maybe I do have the gene.  I mean, can ya see how I'm goin round & round with this?  Other things....can I deal with the emotional stress if I do the test, come up positive for the gene, but opt to not do preventative surgery? Can I deal with more surgery?  Am I ready to say goodbye to my (for the moment) healthy boob-and-a-half & ovaries? Eh, I put a call in to my surgeon, Dr V, to see what he thinks.  Hope we can have a discussion about this soon.  Dr W wants me to do it I think, as apparently there are some guidelines that indicate people under 50, who have had a diagnosis, should be tested.  Lovely. 

Ok, next topic is my hair regrowth.  I'm about ready to get an honest-to-god HAIRDO cut. But the one criteria is: I must still be able to get a little ponytail.  

 

These are 17 months from last chemo. 

Last weekend, we went to an IMAX theater.  Those are SO fun.  Even though I get a bit of vertigo when I'm in there, it's still loads of fun.  We went to see the movie "Tornado Alley".  And I was cracking up that it was narrated by Bill Paxton!  Love that.  Anyway, it's impossible to get a good pic of what it's like inside an IMAX.  So these will just have to do. 

And here is a nice pic of part of a rainbow I took with my cell phone  after a very stormy afternoon.  

 And so, I think we're all caught up for the moment.  Oh, also, I apologize subscribers, for the weirdo notification emails you've gotten recently.  Blogger has been having some issues.  I think they've got it all fixed now.  So, thanks for not stopping your subscriptions.

xx