Helvellyn

I knew when I got my port-a-cath removed last August that I wanted to do something special with it–I just wasn’t sure what.  I had loads of suggestions, but it wasn’t until M suggested we hike our way up Helvellyn over the Easter holiday that the plan coalesced in my head.  I would climb Helvellyn and bury my port at the summit.

Mind you, I’ve never actually climbed a mountain before, so let’s all imagine my shock (and awe) at how incredibly difficult this climb was for me.  Difficult–and completely terrifying–and oh hey, can you SEE the metaphor forming?  I mean, seriously, I had a little metaphor-shaped cloud hanging over me from around the 400 meter mark and beyond.  I mean, seriously.  Incredibly difficult on a physical level?  Check.  Painful?  Check.  Mortal fear?  Check.  Icy cold wind making my face numb?  Well, okay.  That bit was new.  😉

We hiked, we climbed–and once or twice, I scooted on my butt because I couldn’t figure out any other way to get from one rock to another–but, we made it to the summit, and I buried my port inside a cairn just north of the summit marker.

There are cairns all over Helvellyn.  All the way up and back down again.  It’s tradition for climbers to toss another rock on the cairns as they go by.   I think it’s a way of saying “I was here.”

It may come back.  It may be the thing that gets me in the end.  That is the reality we all live with.  But, now–here and now–I feel stronger and less afraid than ever.

I was here.

Me. Sitting on the cairn that now encases my chemo port. If you're ever at the summit--toss a rock on and think of me, will you?

There are more shots on my Facebook page, if you want a peek.

The Bubble Gum Struggle

I was writing this post earlier this morning, and planning to finish it some time today–but, I’m going to go ahead and hit ‘publish’.  As many of you already know–Komen has ‘amended‘ their policy.  So, you know…victory!  Victory that still has a tinge and a taste of something very, very bitter.  (I said on my friend Carrie’s wall today that I kind of wish Planned Parenthood was in a position to be all “Yeah, we don’t need you.  TTFN!” Sadly, that’s not realistic.  But, it would be really really cool.)  So, Komen hasn’t reversed their decision, but they have amended it.  I think this will bear watching closely over the coming months, because I suspect they will try this again…but in a less public manner the next time.

My favorite part of  the statement released by Komen is below:

It is our hope and we believe it is time for everyone involved to pause, slow down and reflect on how grants can most effectively and directly be administered without controversies that hurt the cause of women.  We urge everyone who has participated in this conversation across the country over the last few days to help us move past this issue.   [Komen]

You know what that translates to?

Please stop being mean to us now.

You know, if there is a demographic of people that you do NOT want to piss off, it is the cancer survivor/fighter demographic.  We have already had enough bullshit rain down on our heads, thankyouverymuch.  If you try to rain more, we will kick you to the curb and we will not be delicate about it.  And, I suspect that many of us will not be won back.  I will never give Komen my trust–or my money–again.  I’ve seen what they’re hiding under their expensive pink skirt, and those knickers are NOT pretty.

Before, I go on, I saw this amazing video today on youtube and you need to go watch it RIGHT NOW before you read another word I’ve written here, because she says something relevant to what I’m about to say.  (Also, it’s brilliant and powerful.)  Go.  Go!  I’ll wait.

Now, grab a tissue and wipe your eyes (because your mascara is running everywhere) and we’ll get back to my blog post.

“Breast cancer is not a pink ribbon.”

This is not Komen pink--this is Wendy Pink.

Maaaan.  There’s my dilemma!  Because Komen co-opted one of my favorite colors, ever.

I like pink.  I have always liked pink. I also like P!nk–but this isn’t about the kind of music I listen to when my Spotify playlist is on private.  (Don’t judge me!!)  But, the thing is–once you’re diagnosed with breast cancer, you are surrounded in pink.  You are swathed in cotton-candy flavored spiderwebs of pink from head to toe.  And, suddenly that cute pink ipod you bought two years ago becomes a symbol of your “fight”.  Which, kind of sucks, because you’re all “dude, I just thought it was pretty.”.  It seems like I am constantly explaining the pink in my life.   Breast cancer has been wrapped up in a pretty, pretty pink bow and now I feel like a walking cliche when I put on my favorite sweater (it’s pink) or the gorgeous charm bracelet that M gave me (pink beads–given before my diagnosis.  Why?  BECAUSE I LIKE PINK!  gah!).  And, now with all the Komen hoopla over the past few days, I’m really feeling the irony.

My scars are pink and they swirl around my chest and under my arms  like angry little ribbons, so okay, maybe a little bit of my pink is cancer-related.  But, that’s the only pink that cancer gave me.  The rest of the pink is here by choice.  And, while I will never purchase a bucket of KFC chicken with a pink Komen ribbon on it, I’m not going to let Komen co-opt my love of cute girly things. It’ll take some finagling, because the amount of pink things that Komen HASN’T slapped their brand on is indeed a small one, but I’m a resourceful girl. And, I’m not giving up my pink wig.  Cause it’s super cute.

Donate:  Breast Cancer Action / Planned Parenthood

While I have your attention….

I don't have any relevant shots to post today, so I'll give you this self portrait, instead. If you meet me on the street, please don't mention my huge bulbous red nose. I'm very sensitive about it.

Oh hi, New People.  It’s been super fun to interact with you and meet so many of you during Wendy’s Wild and Ironic Ride on the Meme Train.  (seriously, I love that my complaint about viral updates turned into a viral update.  That was pretty cool.) You’re awesome.  Oh yes, I’m looking right at you when I say it.  Because you know you are.  If you want to stick around, I’ll do my best to keep it interesting around here.  Deal?  Deal.

So, this week, I am the Go-To Girl for snappy retorts to stupid cancer memes on Facebook.  I’m okay with that.  Next week, we’ll get back to our regularly scheduled program of Me Hating My Curly, Curly Hair, and I have a Nutella and Sea Salt Fudge recipe that you  need to try and report back to me–or send to me.   (mmmm, fudge)  But, we’re going to toss out one more meme before we get to that.

We’ve discussed the Facebook cut and paste phenomenon here, and I have mentioned one of the many versions of the following Facebook forward before, but we’ll give this dead horse one more THWACK before we let it go, okay?  A friend of mine–a cancer survivor, no less–received this the other day.  She was torn, because it was sent to her by a friend, and she didn’t want to hurt her friend’s feelings by telling her how it made her feel.   (so…if none of your cancer warrior friends have complained to you when you send them this stuff?  It is more than likely because they’re concerned about hurting you–so, maybe before you hit send, take a minute and think about their feelings.  Please.)

Let’s all take a minute and just…absorb the next few paragraphs, m’kay?

In support of Breast Cancer Awareness…So we all remember last year’s game of writing your bra color as your status? Or the way we like to have our handbag handy? Last year, so many people took part that it made national news and the constant updating of status reminded everyone why we’re doing this and helped raise awareness!! Do NOT tell any males what the statuses mean…keep them guessing!! And please copy and paste (in a message) this to all your female friends! It’s time to confuse the men again (not that it’s really that hard to do ;]) The idea is to choose the month you were born and the day you were born. Pass this on to the GIRLS ONLY and lets see how far it reaches around. The last one about the bra went around all over the world. Your status should say: “I am going to________________for___________ months.”

The day you were born should be for how many months you are going.

January–Mexico; February– London; March–Miami; April–Dominican Republic; May–France; June– St Petersburg; July–Austria; August–Germany; September–New York; October–Amsterdam; November– Las Vegas;December–Hawaii

I know so many cancer fighters and survivors who get stuff like this.  I’m one of them–because apparently, people think that since we had cancer–especially breast cancer, because that’s somehow the SEXY cancer (???? Really?),  we’re really appreciate cute and coy ‘don’t tell the boys’ memes about our bras.  Seriously, there are more ‘flirty’ email forwards for breast cancer than I can begin to count.  It’s depressing.  But, that is a rant for another day.  Where was I?

Oh yes.  Many of us don’t complain, because so many times it’s our friends and our family that send these things to us, and we don’t want to hurt anyone’s feelings.  Well…I’ll will go ahead and be the Bad Guy here.  That’s not okay, y’all.  It’s not . There is NO PART of that email that is okay.  And, don’t you dare say to me “it’s a bit of fun”, because co-oping cancer for flirty fun puts you firmly in the ‘insensitive and clueless’ category.   (Yes, I just called you insensitive and clueless.   Good thing you’re reading this, because now you can move over into the  sensitive and aware category if you choose to do so.)  😉

Even if we try to look past the asinine nature of the meme, “we’re going to raise awareness by keeping it a secret from the men!”–Wait.  No.  No.  I’m sorry, I can’t get past that at all.  Men get breast cancer, too.  MEN GET BREAST CANCER, TOO.  God, people.  GOD.  Nothing in that email  has a single thing to do with cancer.  Nothing.  It’s a game.  It’s a forward.  It’s a meme.  It’s useless.  And, it is by-GOD so insulting to the people who have to fight this disease every day.  If you want to participate in silly Facebook memes, then by all means–do so.  But, how DARE you have the gall to do it under the guise  of “it’s for cancer!”.   How. Dare. You.

The fact that the bra meme ‘went around the world’ is nothing to be proud of, dammit.  You want shame?  That’s a shame, right there.

Happy Cancerversary to me!

I STILL prefer wigs to my hair, which is curly like mad and drives me insane.

So, I feel like I should write something about today.  It’s pretty momentous.  It’s Veteran’s Day (Dear Veteran’s, Thank you for keeping me safe.  You guys are doing a bang-up job.).  It’s also 11/11/11 – the day of “ooooo”.  It’s also my cancerversary.  It’s also Day 3 of me being gainfully employed (ah, back to 2 jobs again–the way it’s intended).  Unfortunately I don’t particularly  FEEL like writing, so this is going to be more ‘update’ than ‘thoughtful blog post about my feelings’.

So, this time last year, I had cancer and was losing my job.  This year, I’m cancer-free and starting a new job (incidentally, my new job is literally in the same building as the old job–and, with many of the same people, as they hired a good many of us back).  My contract work is steady.  Those are good things.  I can see it’s going to take me a while to figure out how to balance all of it and still have a personal life–it feels like I’ve done nothing but work for the last 3 days.

I’m getting a da vinci in December.  I’m not particularly looking forward to more surgery, but I prefer a bit of pain now  to avoid a lot of pain later.  I’ve always been the girl who rips her band-aids off as quickly as possible.  Fast and painful trumps slow and painful every time.  ha.

I have been absent from this blog (badness!), I know–I’d like to say that I’m ‘concentrating on living!’, but really, I just spent most of October completely avoiding cancer-related stuff as much as I could.

I’d make a fine ostrich.

I’m not much of a gambler

Baby needs a new pair of shoes! No, really--I could use a nice pair of comfortable flats.

I’m not sure I’ve discuss my BRAC Analysis results here–they administered the test at my first surgeon visit after my diagnosis–which, I don’t know…once you get cancer and they do a test to see how susceptible you ARE to cancer, it’s kind of a “wow, thanks for letting me know about my  BRCA2 positive mutation after telling me I have breast cancer!”.   It seems a bit pointless at that particular juncture–but, of course, (and it’s the thing I haven’t talked about here) I am not only at risk for breast cancer (which, I already had would be super pleased NOT to have again), but I have around a 20% chance of developing ovarian cancer at some point.  Now, that means I’ve got an 80% chance of NOT getting it, and if I were in Vegas, I’d certainly play those odds.  Of course, the fine folks at Caesar’s Palace aren’t asking me to put my life on the line.  20% seems much bigger when the stakes are this high.

So, this week, I had my first vaginal ultrasound and a pretty serious discussion  with my gynecologist about getting rid of a few more body parts–my ovaries and my uterus.  She gave me a few options—remove my ovaries and tubes, leave the uterus or, do a full hysterectomy.   The method she advises is called a da Vinci Hysterectomy (robotic hysterectomy).  It’s less invasive than an open hysterectomy and the downtime would only be a few days.  I could conceivably be back home the same day.

I have to say that at this point in my life, I am sugeried OUT.  Seriously.  The idea of more surgery brings on a case of The Tragics that no amount of Ben and Jerry’s can abate–but…am I willing to spend the rest of my days having a vaginal ultrasound and bloodwork every 6 months so we can try to ‘catch’ any abnormalities?   Not so much.  And, the more I think about it, the more I realize I’m not all that attached to them anyhow–I stopped menstruating back in 1989 after my son was born, so, essentially all my ovaries are good for is pumping out estrogen, which my (ER-postive) cancer loves to attach itself to–hence the 5 year tamoxifen (which also carries it’s own risk of uterine cancer) prescription.  (ooo…an added plus that my doctor said she would investigate:  Would I have to continue taking an estrogen blocker if my ovaries are removed?  There’s another plus.)

So, she’s given me plenty to think about–and plenty of time to think about it, as my next ultrasound is scheduled for April 23, 2012.   Really though–I’m not sure there’s much to think about.   I should really stock up on Ben and Jerry’s, though–cause there’s no ice cream in this house right now and that’s all kinds of wrong.

I wonder if my insurance would cover  New York Super Fudge Chunk as a therapeutic necessity?

Hit it again

When I signed into my dashboard today this was in my top searches box:

what+do+you+do+when+you+have+fought+so+hard+for+something+but+you+keep+hitting+a+brick+wall?

Personally, my favorite link on that search result is the Aqua Teen Hunger Force movie script.   There is a small part of me that thinks someone would probably benefit more from that link than if they hit my blog looking for answers.  Really, I have none.  Lately, it feels like all of the answers are out of my reach as well.

So many of my photoshoots end up with Pip The Therapy Dog crashing the party--no zombie bride pictures today, because Pippin wants to sit in my lap. 😉

I’m all over the internet this month, taking pictures  and playing  silly Facebook  games and pinning pithy sayings to my pinterest page…but, am I talking about cancer this month? Not so much.    As someone who made it through 8 rounds of chemotherapy without tossing her cookies once, how much of a right do I have to even complain about my experiences?  Sure, I felt like crap and I lost my hair, but it’s grown back and I had a full head of it less than 3 months after chemo ended.  The surgery was hard, but I recovered and I actually like my teeny little breasts more–clothes fit better, they don’t get in the way of daily activities, and they look fabulous in a tight sweater.  I had all the lymph nodes removed on my right side, but I regained full range of motion with my right arm and while the numbness is annoying, I’m used to it so it doesn’t bother me as much as it used to.  I lift weights.  I do yoga.  I was a text-book case of breezing through surgery, chemo and radiation with minimal difficulty.  Did I have cancer-lite?  No.  It was aggressive.  I had multi-focal DCIS and a big freaking tumor on my right breast.  It had spread to 1 lymph node–but, again…I was lucky–we caught it before it spread further.  So many women had it–HAVE IT–so much worse than I did.  I feel guilty because I feel like I really did get the pretty end of the shitstick.  I mean, any way you look at it, it’s still a shitstick, but I got the end that cleans up faster.

Lately, I don’t even like to talk about how lucky I was–it’s like I’m afraid I’ll jinx it somehow.  And…as someone who has both been there, done that, and purchased the pink t-shirt, how much of a responsibility do I now carry to continue the fight to raise awareness?  As a survivor, do I offer hope or do I offer reality?   Can we have both?  I can see how women with metastatic breast cancer can feel left out of all of these pink rays of hope we’re shooting around the world this month–because, the happy hopeful survivor place?  That’s the place I’d much rather dwell, too–and that feels like such a cowardly thing for me to say, but if I’m going to be honest here, then…yeah.  I don’t want to think about this coming back and I don’t want to think about it spreading.  Maybe it’s too soon for me to face the ‘what ifs’.  Right now,  I want to focus on the fact that I WON this round.  But, I was lucky.  So many women are not.  What will I do if my luck runs out and I’m faced with that brick wall once more?

Aqua Teen Hunger Force says “hit it again”.   And, I will.  But, I’m not going to think about that today.  Maybe I will tomorrow.

 

Maybe.

Relief and Gratitude and a House Guest

I have a mouse.  He is freaking adorable, but he is not allowed to live in my house so the game of Catch or Kill is on.  I prefer “catch”, but if I have to resort to “kill”, I’ll do it, because mice aren’t very good house guests at all.  They use your good towels on their muddy feet, don’t put the little wrappy thing back on the bread, and put empty cartons back in the fridge.  I’m pretty ruthless about empty milk cartons.

I’ve spent the last week in a kind of frenzy of gratitude and excitement and fear.  The fabulous people who particpated in the boobiethon netted me $2,555.  You know,  the ‘thon has taken its fair share of flack over the years, because Komen was the main recipient (and for the boobies)–but, in case anyone ever tries to criticize them because the women who need it don’t benefit–send them to ME.  Send them here:   I am a breast cancer survivor and the Boobie-thon has just paid for the next 4+ months of my COBRA.  I don’t have the proper words to say how much this has meant to me.   I’ve tried thanking everyone who donated to me (I think I thanked a few of you twice–haha) and it feels like it was just this litany of “thank you, I’m overwhelmed, and OH MY GOSH!”.  hahaha.  If I babbled to you, I apologize.  I really was completely overwhelmed.  Thank you Mel for doing such a fantastic job as the organizer, and thank you Statia, for nominating me.  I love you guys so much.   I’d be remiss not to mention that Pete’s image  went up to $350, and my very good friend Jason is also auctioning off a shot for me (it ends Tuesday).  I have such amazing friends.  I really do.

Don't freak out--I was stopped at a red light when I snapped this.

There is a sense of relief that this little bit of attention is kind of over for me now, though.  I have to admit–I felt like HIDING a lot last week.  I have no idea how I suddenly became The Shy Girl, but oh maaan—I just felt so completely undeserving of all of the kindness directed my way.  I couldn’t look at my stats, because I’m so used to the 20 or so people who read this and when there’s suddenly 700 views on your blog…it’s scary to feel so opened up and vulnerable.  I’m not used to it.  🙂  Overwhelmed.

Physically, I’m doing really well.  The hot flashes haven’t gone away completely–but, they have subsided.   I think I had one yesterday.  Hurrah for Effexor!   My hair–much to my chagrin–is very curly.   DO NOT WANT.   Seriously, I actually had a moment yesterday in which I missed my wigs desperately.  I feel terribly ungrateful for disliking my hair, because–helloooo, at least I have hair, right?   WHINGING!  I should stop that.  I’m just super lazy and hate fixing my hair every day.  Seriously I do not get how short hair is easier.  Ponytails are easy.  Massive amounts of hair gel are not.

What a difference a week can make!!!  For reals, people–my biggest complaint about my life right at this second is that I have to fix my hair.  I’m going to stop and just enjoy that for a minute or two.

The Tale of the Phantom Port

I noticed yesterday in the shower that I was still very carefully washing my neck and upper chest, so as not to touch the (skeeevy) chemo port that is no longer there.  Old habits die hard, don’t they?

It’s still a shock to me when I look at pictures of myself now and there isn’t a hard little round disc sticking out of my chest and I still occasionally feel a bit of a phantom pull in my throat where the port met my jugular vein.  I expect this will all fade eventually–I mean, I finally learned where my breasts are located on my body–for the longest time after my first surgery, I found myself trying to wash under breasts that were no longer there.  (Seriously.  It was super annoying.)  It stands to reason I’ll figure out my neck is OKAY TO TOUCH AGAIN eventually.

Why yes, I did make myself a shirt. Iron-on transfers, ftw!

Right now, the only real obstacle I face in the shower is shaving my right armpit–because the underside of my arm is numb (and will remain so–this is something that won’t go away since they removed all my lymph nodes on that side) and I haven’t gotten around to getting an electric razor yet, so cutting myself without realizing it remains a possibility.  I never realized how much one shaves just by feel.  The pressure of the razor against your skin is how you tell you’re doing it right and I can’t feel that anymore.  Frustrating, but not end-of-the-world stuff, so I can deal.

I’ve been pretty lucky so far with my arm.  Working out doesn’t bother it (I’m being very careful not to overdo it, as I know it’s a bit risky–but, I think the benefits outweigh the risks.  It cannot do me anything but good to build up the muscle in my arms.) and I’m hopeless when it comes to remembering not to carry my purse on my right shoulder, but it hasn’t affected anything.   I haven’t had to deal with any swelling or other signs of Lymphedema yet.  I have full range of motion with the arm as well.   Dr. Awesome (my surgeon) was unsurprised at my progress.  “You’re young, you’re healthy, there’s no reason you shouldn’t do well.”.

I’m going to just take a moment and enjoy those  words.  Cause I really love it when my doctors talk about how ‘young’ I am.

Tomorrow is the very last day of the Boobie-thon, and I am just completely overwhelmed with gratitude over how generous people have been.  I’ve talked about ‘moments of grace‘ here before, and I want you all to know I’ve had more of those moments this week than I can count.  I feel like I keep repeating myself over and over, but it’s all I know to say or do.  Thank you.  Thank you.  ❤  One day, I’ll pay all of this forward.

This is the very last Boobie-thon ever, which is such a bittersweet thing to all of the women who’ve been involved over the years–but I think especially to Robyn, the founder, and Mel, who took over organizing the thon for Robyn a few years back, and I’m sure for my Hot Internet Wife, Statia, who was the reason the whole thing began.   These women have worked tirelessly for a cause they really believe in and I think they’re amazing.  There are a few really fun contests (win a Kindle Fire or a $30 Amazon card!)  running over there right now, and you still have time to enter, so head over if you like.  Now, shoo!

Hey, those fancy movin’ pictures are nifty!

Seriously, I should have prepared something instead of trying to wing it.  It’s never pretty when I try to wing it.  🙂  But, hey, that’s me up there, being my usual awkward self, trying to thank people and rambling on about hats and hair instead.  I am blessed with the best friends in the world, the best family in the world–and hey–I am also bless with meeting the best total strangers in the world.  If you’re reading this now, just feel free to assume that YOU are awesome and move forward with your life secure in that knowledge.

It’s Day 4 of the Boobiethon and they’re going strong over there–there’s a tweeting contest happening right now that you should totally try to win, and of course, they need both boys and girls to donate pictures.  My dear friend Pete is auctioning off one of his gorgeous pictures for me, and I am beyond overwhelmed by all of this.  I feel like I keep repeating the same thing over and over–thank you, thank you.  But, it is sincere and it is from the bottom of my heart.  Thank you.  Thank you to everyone who’s donated, thank you to everyone who’s passed my site along.  I feel so completely undeserving of such amazing support, and I look forward to the day that I can pay it forward.

I am so lucky.  I am.  I can never say it enough.  Thank you.

Lock your doors and hide your children!!

RUN FOR YOUR LIVES OMG!!!

I’m not going to hate on pink this October.  I know many women, many survivors and fighters dread October and I am so completely okay with anyone hating The Coming of the Pink, because I see the other side of the coin now.  I’ve had a foot in both worlds.

Please know, there are moments when I open my mailbox or try to buy a new spatula that I think I may cut some bitches over all the PINK in my life…but, I have to admit…the month of October, for all its merchandising and hype, is a really good opportunity to remind people to do self exams and schedule their mammograms.  I mean…how many of us found our lumps/were diagnosed around this time of year?  I don’t know any stats, but I’m willing to bet there are a great many women and men for whom October is The Month They Found Out.  I know it was for me.

That said, it’s once again time for the Boobiethon.  Why am I enraged  by one form of titillation, yet completely okay with another?  Oh, Dear Frantic Googler, I’m glad you asked.  I am a complex woman.  Full of mystery.  And caffeine.  And occasionally bacon.  My thoughts on the Boobiethon.  Let me show you them.

I know the history of it (which is a bit of an amusing story involving my Hot Internet Wife and very good friend, Statia).  I’ve known Mel for years and she is just awesome—because, I do have excellent taste in friends, if I do say so myself.  So, yeah–I know the women running it.  They’re awesome, they’re caring and smart.  They’ve raised nearly $75k  in the past 9 years and I hope this year turns out to be a record-breaker.

How is this different from those stupid bra memes I hate?  Because the bra memes are  coy and confusing and make no sense or reference to cancer at all.  The boobiethon talks about breast cancer.  Why are we here?  Breast. Cancer.  No one is coy about it. Men are involved, men are submitting shots–because men are affected, too.  Are men looking at the pay-per-boobie page?  Well, sure.  So are women.  Is it titillating?  Yeah, it is.  I have no issues with titillation if it reminds someone to get their mammogram scheduled.  Most of us love boobies.  I love them.  I loved mine—until they tried to kill me.  THEN I CUT THEM UP. (okay, okay–my SURGEON does the cutting)  Harrumph.  Murderous boobies get the knife in my house.

I know these women and I know that they are more than just their breasts, just as they know that I am more than just mine.

I know that “save the boobies!” tends to be the October battle cry.  But, I also know that it’s too late for so many of us to save our boobies and we had to concentrate on saving ourselves.  I would love to see ‘Save the Women’, but then that excludes men, so maybe we should concentrate on saving the people.

I would like that.