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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 work....yeah....it 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.






11 comments:

LunaTechChick said...

And yeah, looking back at my very first post after diagnosis, I declared I had "already beaten it". Oh how naive & uninformed & soooooo unprepared I was.

Alicia Burris said...

You know what, everyone deals with fears and anxieties about things in their own way, I've seen two people in my own immediate family deal with BC, one did not survive it, it is a scary thing that I don't think anyone Ever truly gets "over" it. I pray it will get better for you but if people give you a hard time well tell them until they have "lived it" they havw no idea what they are talking about and they have no right to tell you how to feel, if they love you they will understand if not tell em to eff off! LOL

LunaTechChick said...

Oh thanks so much for that Alicia! Yeah, some days are better than others with this for sure...& I really am not all bc all the time. I guess all the pink in October makes me grumpy. And that somebody hurt my feelings...I'll get over it. And yeah, eff off if I'm annoying you. ;)

Kathi said...

Oh, I could rant about this, too. Most people have no idea how dicey and sneaky breast cancer is. Most people have no idea how many cancers are missed by mammograms. Or that the 5-year survival rate is an arbitrary figure, and rates of recurrence are different when you extend that out to more than 5 years, and depend on so many different factors.

All we can do is let time go by, and hope it does go by, and take care of ourselves, one day at a time. It's part of what a lot of us call the 'new normal,' although I'm not sure anyone ever really feels 'normal' again.

It does get easier, though, I can tell you that. Hugs, Kathi

LunaTechChick said...

Hi Kathi! Yes, I'm finding each year to get easier, but I effin hate the new normal. Thanks so much for reading & commenting. :)

tccomments2013 said...

dear Luna,

GREAT RANT!!! i don't know a single other person in my circle who "gets it." the only saving grace is that for the most part i know they love me, care about me deeply, and mean no harm; and most of what is said is meant as kind compliments. but it still rankles, just not with them personally. it rankles with thinking of the SGK money machine that has betrayed it's leader's own sister who died a horrible death from MBC, it rankles with the pervasive sexualization of BC, and the corporate sleaze balls who use manipulation and greed to fill their coffers with not an ounce of gumption addressed to transparency, let alone the paltry (and sometimes complete lack of) contributions to research. occasionally, if i feel overwhelmed with the dumbing down of cancer, especially MBC, which i presented with upon my first diagnosis, and someone blithely refers to "wow-you look great!, i calmly tell them it may not always be that way as i will be in treatment for the rest of my life. kinda adds a bit of perspective. stops them in their tracks. i highly resent having to be THE MESSENGER of education about breast cancer to casual and well-meaning friends. it takes up an awful lot of emotional energy and often leaves the other person feeling awful and embarrassed. it is not their fault that pinkwashing and all it's accompanying clap-trap, pink-rah-rah runs and pink tee-shits and (some carcinogeous) foods, and
trinkets are designed to hide the truth and reality of what we live with. still...i am so happy if i can direct them to blogs telling real stories of BC and MBC experiences like yours, as well as to sites like METavivor. et al, where they often are glad to go and get the true skinny. then it's great to hear their feed-back and be able to have a real conversation about what's what's. all i can say as i ponder this awful lack of education of those around us who care, but do not understand, is that i thank my lucky stars to be included in our close, vocal, and diverse BC community.

much love and warm hugs to you

Karen

LunaTechChick said...

Hi Karen, Thanks so much for those comments. Yeah, I do realize that people simply love us & want only the best for us...I even blogged that particular topic a couple of years ago. It does seem like more people are questioning where the pink money goes, & that's a good thing. But it does suck to be the messenger. And the SGK thing....I was right in the middle of treatment when the pink light bulb came on for me & I could finall see what's really going on there, & I was so disillusioned & angry. Effin mbc sucks. Well, all cancer just plain ol sucks. Thanks so much for reading & commenting here. xx

eileen@womaninthehat said...

Kimberly, of course, we never really know if we're out of the woods. Metastasis happens all the time. It's so frustrating when our non-cancer friends think everything is fine from the moment we finish treatment. They constantly undermine and discount our feelings with sugar-coated ignorance. I'm glad you ranted about it. You've voiced all of our fears and frustrations.

LunaTechChick said...

Hi Eileen! This rant came out of some comments that were made to me recently that just really hurt my feelings...not just what was said, bur that ot was said at all...not gonna publicly post exactly what was said. Hearing from others in bcland that I'm not a freak & it's normal to have scary moments is such a validation...makes me feel so much better. Thanks so much for those comments.

Thanks all for reading & commenting. xx

Carolyn Frayn said...

I'm sorry I didn't read this earlier, I was offline for a few months, including last pinktober. Fear is healthy, I don't care what anyone says. You are being true to your feelings, and that's what is important. Plus of course, you are right. We aren't cured, ever. I was one of those happy oh-I'm-done-I'm-healed people, I had no idea... part of that stems from the pink bullshit shoved down our throats I'm sure. But, BC wasn't finished with me, and now it will do me in. Keep vigilant, it's most wise. xoxo

LunaTechChick said...

Hi Carolyn! Thanks so much for adding your thoughts here. It's a relief to have confirmation that I'm not crazy, like some people would have me believe. And I think a break from being online is helpful. I feel like I'm gonna have to take a break soon. The pink bullshit is starting up again around here with all these "race / walk / 3 Day For The Cure" & I'm just sick of it. Still not nearly enough funding sent for research about stage iv. At least not from these pink pirates. Thanks so much for reading & commenting. xx