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Friday, October 31, 2014

And Every Day Is Halloween!

Goodbye Pinktober. Yet the pink crap hangs around. Sure the big displays on endcaps and in aisles will be packed away, but you can always find pink ribbon crap around in stores, all year long.  It makes a bit of a comeback in the spring also, for some reason. But I'm glad to see the end of the pink party. Buh-bye Pinktober!

I love Halloween. It's my favorite holiday. It's full of scary, spooky fun. But there is that "fear" that is part of my life, and I totally hate it. "The fear"....the bc fear. Fear of recurrence. Fear of metastasis. Fear of having to do it all over again, be bald, feel shitty, wonder if I'm gonna live through it. It sucks, but it's part of the "new normal" for most bc people. And sadly, so far, nothing from all that pink awareness has done anything to even begin to corrected that. 

Anyway... I appreciate (every day) that I am one who is so very fortunate that I can choose to not allow that effin fear be part of my day today. (So many are not. And no thanks to the pink awareness.) 

It's Halloween, I love it, and I'm going to enjoy it. 

And I'm going to try (harder) to make every day like Halloween...

Buh-bye Pinktober! 

Saturday, October 18, 2014

Just Beat It

Ok, time for a bit of a rant. (Again?) And maybe I'm just too sensitive, need a thicker skin...whatever. And this post has been in draft and rewrites since before I reached the end of all the cancer doctor appointments for this year. And I'm pretty sure a bit of what I'm bout to say will make me unpopular with some.  

I'm sure we're all seeing this, especially now that we're right in the middle of the pink craziness that is October....banners and pictures that state: "When breast cancer is detected early, the 5 year survival rate is 98%." This is starting to grind my very last damn nerve. That number...98%, includes so many people who will not survive bc.  This number is based on still being alive after 5 years.  So you catch it early, do treatment, survive 5 years, you are counted as a survivor.  If you get diagnosed with metastasis of your bc, even the day after your 5 year cancerversary, (or even in the middle) well, then, I guess you get counted again as part of the 30% of bc people who will get metastasis, even years and years later.  So now you're both a "survivor" and a stage 4 patient. Mine was not considered "early stage" by the way. 

So recently I've had more than one person tell me that I'm allowing "the fear" to ruin the rest of my cancer free life, every day, and that it's such a shame, since I've "already beat it".  (Obviously people are super weary of my bc talk this time of year.) Some expressed this opinion to me in a friendlier manner than some others did. But not all the people who know and care for me think this way...Or at least I don't thinks so... Maybe there are some who are keeping it to themselves if they feel this way about the way I'm handling my survivorship.... Well...if only there was a point where we can know for absolute sure that bc is done...not coming back, I wouldn't get so bent when people say that kind of thing to me. But, sadly, we aren't there yet.  And, although I've blogged this nine ways from hell to breakfast, it bears repeating....bc is an asshole... it's a kind of cancer where there is no amount of cancer free time that indicates "yer done". Ok? There's just not!! And it could come back, or worse, metastasize, at any time, regardless of the stage at initial diagnosis and regardless of treatment chosen. And it can come back as a totally different kind of bc than what you started with too, so there's that. Pretty much about 30% of people diagnosed will have stage 4 bc.  And it sucks. And this is where "the fear" comes in when dealing with oncology style of appointments.  

Now, I can confirm that, each year I'm better at managing this effin "fear".  Less and less of my time is consumed with bc issues now.  BUT, when faced with a mammo, or oncologist, or blood rears it's ugly head.  And from what I can tell from talking with others, it's completely normal and natural.  I allow myself to feel how I feel. 

And if "beating it" were as simple as only eating organic, consuming tons of kale and blueberries, chowing down on lentils while burning patchouli incense and singing "Kum Ba Yah" around a fire pit, then surely info on this would take bc treatment more that way, oncologists would prescribe it & proclaim the elusive cure has been found, and no more with the "slash / poison / burn" treatment.  Ya know?

Anyway, we're all (bc people) gonna have those anxious moments... please don't make the mistake of telling us to just be all super happy & positive 100% of the time cause we've "beat it".  

Only if and when I'm privileged enough to become much, much older and / or pass from something other than bc.... Then I've beaten it.

Just sayin...

Ok, end rant.

Thursday, October 16, 2014

Breathe With Me....

So, I tried something a little different for this round of visits to all the doctors.  I didn't come on this blog, or even social media, all whining & lamenting ad nauseam for days and days about each and every single one of my appointments this time around.  No, rather, I blogged that they were looming ever closer a time or two, and left it at that.  But now that I've seen all the docs, and had the dreaded mammogram, I'm here to say that we lived through it...I'm still married...(LOL), and I'm still in the clear.  

NOW I can celebrate the gratitude for still being here, five years out.  And we do know, again, five years doesn't mean much for bc, but it's still pretty damn huge.  Especially for the kind of bc bs I had.

And, another something a little different. Although this last appointment yesterday with the always excellent Dr W was the last to officially "graduate" me to ANNUAL appointments, from six month appointments, my oncology team and I would still like for an oncology minded doctor to put his eyes (and hands) on me, at least every six months.  How can this work?  Well, Dr W said that he has no problem with a slingshot into in, I will not see him again until March, 2016.  Then it will be him annually in March, and Dr V / mammo annually in September.  

Ok, let's back up to the beginning.  It started with the mammogram.  I was a little extra nervous this time because, exactly one week prior, I noticed a firm, round, lump thingy in my chest, on the bc side, about an inch and a half below my collar bone.  And I just KNEW it was a bad lymph node.  Just knew it! So I asked the mammo tech to feel it.  She wasn't impressed with it at all.  And this diagnostic mammo was fine and I was told I can now move to "regular annual screening" mammos, if the ordering physician agrees.  

So the next day was the visit with the most excellent surgeon, the "ordering physician" Dr V. I put his hand on this newly found round thingy.  He wasn't impressed with it either.  I asked about having an ultrasound on it. He was happy to order it, but felt nothing was even going to show up. Said it may very well just plain simple be my body.  So I agreed....he IS the boss of this stuff anyway.... If it changes or grows at all, call and we'll check it out further. So that was that, and I decided to try not to worry with it anymore. 

Next up was the annual physical with Dr C.  He gets to be the "scary doctor" this time, cause he's in charge of running the blood work that the oncologist, Dr W, will look at to determine my future.  Had a nice visit.  I decided to have Dr C also put his hand on the little round lump thingy.  He totally dismissed it as a possible "nothing lump thing", like a "subcutaneous round cyst lump of nothing", or something along those lines.  So, at this point, I'm not concerning myself with it anymore.  Unless it gets bigger.  So I'm trying to stop touching it constantly.  Maybe just check it monthly, like I'm supposed to be checking my boobs.   And the blood work came in with perfect results, as usual. Oh, and O told me so. LOL! ;)

Anyway, back to yesterday's was probably the most lovely visit I've ever had with Dr W, second only the the very first visit we had with him way back in 2009.  And at the end he gave me the most nicest, sincere hug.  And I left floating out the door on Cloud 9. 

And then O took me out to the nearby Cheesecake Factory for a lovely lunch and my annual, celebratory, and very over priced Grey Goose Martini with Bleu Cheese Olive.  And it was Awesomeness.  (I know, I as I say, not as I do, y'all! LOL!)

And that wraps this year's tour of oncology appointments.  I'm in the clear, still dancin with NED for another year. 


Saturday, October 11, 2014

Why Don't We Get Drunk And...

Raise money for breast cancer research? Really?

Wow...I'm seeing some really stupid fundraising for this Pinktober, but this sucks on several levels.

First, studies have recently shown alcohol to be a risk factor in breast cancer.  So yeah, probably not the best idea in the world to sell alcohol to raise money for bc research.

And also the sexualization of bc..."X-Rated Flirtini"...There's nothing sexy about bc.

I received this in the mail last week.  Pretty sure that LBBC has no idea they are being associated with this. I sent it to them to ask.  Haven't heard back. 

UPDATE: October 16, 2014 I received the following email from Living Beyond Breast Cancer:

"Dear Kimberly,

Sorry for the delay in responding.  Our gala is this Saturday and your email got buried in the general email box. 

Thank you for sharing your thoughts and concerns with us regarding Houlihan’s October promotion that benefits LBBC.  We are aware of this partnership and agreed to it, but we did not see or approve the advertisements.

Please know that we take into account the opinions of the people we serve and very much appreciate your input.  We will take your opinion into consideration as we evaluate future partnerships. 

Again, thanks for writing.

Sandy Martin
Vice President of Advancement

Living Beyond Breast Cancer
354 West Lancaster Avenue
Suite 224
Haverford, PA 19041"

Friday, October 10, 2014

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

Wednesday, October 1, 2014

Red And Yellow And Pink And Green....

...Purple and Orange and Blue....

Here's an idea....let's stop giving so much attention only to breast cancer.  How bout we focus on finding the cause, fund research and work to find cures for ALL cancers. 
Every Month. 
All Year.

Think Before You Pink.

My feelings on all this Pink in October have evolved quite a bit over the five years I've had to have the bc bs in my life. This year, my feelings on it are pretty much the same as they were last year. So here's a reblog of part of that post from Pretty In Pink.

Nope.  No it's not.  October. Here we go again.  Pink bc awareness month. Seems that every single year, my thoughts change on how I feel about all this pinkness.  Last year I was just kinda "meh" about it.

This year I'm just over the pink this & pink that.  No, I'm not one to get all militant about pink ribbons & pink everything in October.  But I'm starting to see that it's just not fair.  WHY all this attention on bc?  Isn't every single damn part of your body able to get some sort of cancer? Why all the bc focus?  And why pink?

One thing I really have never understood is all this "Race for the Cure" stuff where you see ladies all decked in pink everything, complete with boas & tutus & tiaras.  I can't really understand how people appear to be all celebratory about bc awareness.  Believe me, the world is totally fuckin aware of bc. And before you come at me with the "they're celebrating survivors" stuff...I get that.  But at the same time, I kind of feel it's insensitive to those living with stage iv bc, & to the families of those taken by it.  Yes, when I first was diagnosed, I went to "Pink Out" things & did Relay for Life stuff...wore pink ribbons...but as I went through & continue to go through it, thoughts & feelings change, ya know? 

Now hear this: There is NOTHING Pretty In Pink about bc.  

So, September is Ovarian Cancer Awareness Month...where's their Teal Race? Or Leukemia's Orange Race?  And so on & so on....

But nooooo...let's just make a big ol fuckin party about bc.  Why?  Cause it's BOOBS? Everybody likes to look at boobies, right?

Well, I'm sorry that maybe you don't find a Pancreas as pretty as Boobies, but I sure would like to see even HALF the attention given to bc, shared with funding research for pancreatic cancer...or colon cancer, or....What, colons not cute enough for ya? 

Let's not forget that there are all kinds of fucked up cancers out there, ok? (Is there any other kind? I think not.)

...Please don't misunderstand me.  I don't have issues with those who like the pink ribbon. I am not offended by the pink ribbon. I'm VERY honored when someone tells me they participated in a Pink *this or that* thinking of me or in my honor.  Love love love that.  And thank you so so so much.   

Just think before you pink. Seriously, the majority of this pink ribbon branded merch only donates the tiniest portion to bc research, if anything at all....


Let's take back October for spooky Halloween fun, cooler temps, sweaters and any and everything NOT to do with bc.