For The Cure, Or Not?

The following print advertisement appeared in the January/February 2012 issue of the Brown University Alumni magazine.  Beneath the title, which read "Every 74 seconds a woman dies of breast cancer", was the following text:

The first item that struck me, in the above advertisement, was the logo.  Where's their famous strap line, "for the Cure"?  Compare to the logo at left that currently appears on Komen's website.

Does the dropping of the strap line represent yet another rebranding effort for the Komen organization?  Are they seeking to take the emphasis off being for the cure, in order to lower the public's expectations and avoid the criticism by the likes of the "Grumblers" with respect to Komen's spending priorities, specifically the relatively low amount allocated to research?

If this omission of the strap line does indeed represent a rebranded logo, then I have to wonder where the last thirty years and over $2 billion of funds raised actually went?  Is Komen finally admitting that funding research will never be their top priority, and that a reach-for-the-stars strap line is simply not delivering the kind of success metrics donors and the public alike might be starting to look for?

As I said I don't know if this a rebranding exercise.  Or whether Komen just picks and chooses which logos to use depending on the publication, but I'm keeping my ear to the ground on this one.


Next I looked at the text of this advertisement, which, as usual,  is full of decontextualized factoids and sound bites.

"Last year alone we funded more than 700,000 breast screenings"

To this factoid I say, so what?  Is the number of breast screenings the metric which Komen uses to define its success in early detection? Wouldn't a better metric be the number of deaths that were prevented as a direct result of screening and so-called early detection?  Trouble is, this kind of metric could only really be proven if the person screened ultimately died of something other than breast cancer, and would require a long-term research study.  As we know, people who are diagnosed early can still go onto develop metastatic breast cancer.  In fact, I personally have met a number of women, originally diagnosed at Stage 0/I, for whom this happened.

So of the 700,000 screenings, it would be far more useful to know how many women were diagnosed with invasive cancers? How many of women went onto develop metastatic breast cancer?  How many lives were really saved out of the 700,000 screenings?   Only then can the donating public really understand whether the "700,000 screenings" indicates a level of success worth investing in.

Recent studies have suggested that breast cancer screenings can result in a 20-30% reduction in breast cancer mortality rates.  But as Gayle Sulik, author of Pink Ribbon Blues aptly points out;

If the reduction in mortality is only 30 percent or less depending upon the country, the context, the follow-up, the level of expertise of providers, and the individual profiles of the women (and this is a short-list of just a few caveats), then what are we doing for the remaining 70 percent? [Editor: Emphasis added]

For the world's largest breast cancer organization to crow about 700,000 screenings without providing relevant success metrics is simply not good enough.

"We helped 100,000 people financially through treatment" 

In 2010, Komen spent about $20 million or 5% of their budget on treatment.  For 100,000 people helped, this equates to about $200 per person.  Whilst any money is good money to those in need, realistically $200 would pay for about fifteen minutes of consultation time with an oncologist.  I've been in treatment since 2004.  My first year alone, I paid close to $10,000 in charges that my insurance didn't cover.  What if I didn't have insurance?  $200 would be nice, but it certainly wouldn't even scratch the surface in terms of financial help for treatment.

Given that poverty has been associated with higher cancer mortality, I would argue that treatment assistance should be much higher in Komen's spending priorities, not the lowest as it currently is now.

"We educated millions about breast cancer"

Yes, to the tune of $141 million in 2010.  $141 million or 37% of Komen's annual budget, and Komen's number one spending priority by far!

Compare Education spending to their other allocations.  Extraordinarily high.

"We invested $66 million in breast cancer research and related programs"


It's interesting that this is the only dollar amount mentioned in the ad copy.  And yes, $66 million is a lot of money, but when compared to Komen's total revenue of $389 million in 2010* , and the amount spent on education, it's clear that research comes up far short in terms of priorities.

And perhaps more so in the future if Komen is indeed no longer interested in being for the cure as the ad logo would suggest.

* Note that 2011 financial statements are not yet available.

************

Given Komen's relentless pursuit of the almighty dollar, and its almost megalomaniacal status as the world's leading breast cancer organization, is it not time for Komen to be more transparent about where it's future priorities lie and how it evaluates it's success? 

Don't we, as the donating public, deserve better?   

Come on Komen, what's your plan for the next $2 billion, and if you are no longer for the cure, then what are you for?

2012, With No Apologies to 2011

We're well past January 1st, and I thought by now I'd have something meaningful and inspirational to say.  The blogosphere has been ripe with posts of self-reflection, transcendence, gratitude, resolutions and three words to guide us for 2012.

As for me readers, I've got nothing.  Except if you count the phrase "I'm still here" after my own annus horribulus in 2011, as my important three words.  Yes, that will do.

I also kicked off the new year with an invitation to my 25th high school reunion in November, of which my first thought was not "Do these jeans make me look fat?", but rather "Will I make it?", and by that I don't mean with some long-lost high school paramour.

That's the thing about metastatic cancer.  I'm feeling pretty good right now, even in my one-handed chemo-fogged state, but with the disease at this stage, you never know what fun is just around the corner.  The game can literally change overnight.  And I don't say that from a hopeless kind of perspective. In fact I'm far from feeling like that, it's just simply fact.  You never know.  [Editors Note:  Please don't come at me with the "hit-by-a-bus" analogy unless you want a serious tongue lashing].

Anyway I think I'll RSVP to the reunion with a "Yes! So long as I'm not dead or otherwise indisposed with collapsed lungs, chemo sickness or some other cancer-related crap".

So what I do I want for 2012?

Above all, medical stability.  Medical instability of the cancerous kind is highly inconvenient, especially with all the travel I dream of catching up on this year.  It's also not a good look for a high school reunion.

Secondly, I'd like to resurrect my Can-Do Women blog.  I was off to a really good start in the first half of 2011, then medical instability for the second half sent that priority to the bottom of the pile.  Incidentally, I'd welcome contributors to that blog if anyone feels so inclined.  Check it out.

Third, I resolved before Christmas to give my local in-person support group another chance.  I went to one session in December and of course I hated it.  One too many narcissists who love the sound of their own voices for my liking.  Huh? Bloggers, narcissists?  Noooooooooo.  Anyway, I've decided to give it a couple more attendances, and if nothing else I'll view it as an unacademic social experiment which should provide ample blogging fodder for the foreseeable future.  Unless Lucy Loudmouth decides to shut her mouth and let someone else talk, or I grow some balls and tell her to shut the hell up.

I also might try working on this "gratitude" thing that everybody seems to be buzzing about, even though the words gratitude and cancer don't go together in my mind.  Unfortunately, I tend to misbehave with exercises like this.

I'm GRATEFUL that I have at least one working hand.

I'm GRATEFUL that metastatic cancer is such a pile of crap that at least I have something to blog about.

I'm GRATEFUL that my dog only rolls in skunk excretions once a week.

I'm GRATEFUL that I have so little wherewithal to do much of anything around the house that it gets me out of all the chores I hate (with apologies to Beloved).

I'm GRATEFUL that so many breast cancer organizations are a waste of space, and that I still possess the energy to bitchblog about them.

I'm GRATEFUL that I still have blog readers despite my penchant for sacrilegious snark.

And with that dear readers, I'll leave you with these wise words and wish you all a Happy, Peaceful and Medically Stable 2012.

"Never go to a Doctor whose office plants have died" (Anonymous)

Th 80's have a LOT to answer for!

Pink Proxy

My little patch of hair is falling out again. Again! Seriously, how many times can a person's hair fall out in the space of a year? I hope you're keeping count, because I've lost track.

This past week has been, shall we say, interesting. It seems fitting that I spent Monday, the last day of Pinktober, at Pinkbank Hospital being investigated for mystery shortness of breath.

I started off in the cardiac unit for an echo cardiograph, but was sent packing when they couldn't find my heart on the scan. Somewhat troubling and almost laughable. The techs parting comment to me was something about implants hiding the heart. Damn those pesky reconstructed breasts!

Then I was shunted off to receive a chest CT scan, where I was greeted like an old friend by the radiology nurse who came to access my port, so that I could be shot up with radioactive dye. It's also troubling when everyone in the hospital seems to know you. Obviously I've been spending way too much time there.

Then the news. You have a pneumothorax (partial collapsed lung) and we're taking you down to the emergency room now. Great. Here we go again. Cue the waterworks.

Pull up to emergency room desk. Me in my wheelchair sobbing. Radiology nurse clucking attentively. Emergency room desk receptionist dressed in bright pink breast cancer awareness sweatshirt and pink ribbon lanyard. Rather than taking pity on me, as I would have expected from someone who was so aware of breast cancer, and on the last day of Pinktober no less, the bitch (it's the only fitting descriptor) couldn't have cared less, and rudely waved us on to the next receptionist.

It was at this point that I stopped crying, and almost burst out laughing at the irony of the scene.  Has the color pink simply become a proxy for giving a shit? Wasn't I the point of her stupid sweatshirt? Wasn't I entitled to some special pink treatment during my special pink month? What's the point of having breast cancer if you can't jump the ER queue at least because someone's AWARE of you? Perhaps it was my fault. Maybe my chart wasn't clear enough. More the fool me for forgetting to wear my pink feather boa, bedazzled pink fedora, and Fight Like A Girl t-shirt.  End facetiousness.

Cubicle 18. Hooked up to monitors and oxygen. Waiting, waiting, waiting.

Finally my old friend Dr Cuteness arrives. Mother-in-law almost swooned. The man is seriously handsome. But I managed to focus and listen to what he was saying and after a long discussion we decided against an immediate surgical intervention. Let's see if this thing reflates on it's own. Come back on Wednesday for a chest x-ray, and if it hasn't improved then I'll meet you in the operating room.

Luckily, my date with Dr Cuteness in the operating room hasn't yet come to pass. So far the lung is behaving and I've managed to avoid surgery. I'm not out of the woods yet, but at least headed in the right direction.

Spirit Fingers

I think I finally turned a corner last weekend in terms of finally feeling like I was getting my strength back.  How did I know?  For the first time in nearly two months, I actually felt like getting out of bed! And so I did! It felt good.  Then I did some chores.  And that felt good!  Beloved and I took doggie for a long walk, and that felt good! And I didn't require a comatose nap at all over the whole day.  And that felt really good!  At last I feel like I am on the upswing.  Well, relatively.

And so readers, today I was going to write a really snarky post about Susan G. Komen For The Cure's ridiculous "Less Talk More Action" campaign, and their even more ridonkulous accompanying "fun and meaningful" schedule of activities for Pinktober.  But with "actions" like October 7 as an example;        

On this edition of JEOPARDY!, America's Favorite Quiz Show®, there will be a "pink ribbon" clue. Will you have the correct response? 

Readers,  there's not much more I can add to this, so I invite you to form your own conclusions, as to whether this calendar contains the kinds of "actions" that do anything "meaningful" in the fight to eradicate breast cancer?  Wait, I'll answer in Jeopardy-speak.  Which self-anointed global breast cancer organization's "Less Talk More Action" campaign is a complete waste of time?

Moving right along, and back to breast cancer reality, I thought I would update you on my situation.

Nothing says "I love you" to a cancer patient like
a 750-pill bottle of stool softener

Since I am finally feeling better, of course this meant that this week I started my new chemotherapy.  Although Dr G says this chemotherapy is generally "well tolerated" I know this to mean probably only on the lab rats it was tested on.  I did make the mistake of reading the sweet little pamphlet they always give to you with any new chemo, and did actually see the word "death" mentioned at least once.  A side effect perhaps?  I'm not sure but a comforting thought nonetheless.  But seriously, I'm now back on a chemo, where my old friend, Constipation, is likely to be a regular visitor.  Oh geez.  No one obsesses more about bowel habits than a cancer patient I can tell you.  Needless to say I have cleaned out the laxative aisle at the local pharmacy, and this being America, everything blessedly comes in economy size.

I'm also learning to live with the hand disability and am now attending regular occupational therapy sessions.  I have regained some movement in my fingers, so that I'm able to perform "Spirit Fingers" on command, and am almost able to flip the bird as well. Unfortunately I have yet to regain much strength back, so whilst Spirit Fingers are a fun diversion for Beloved, and flipping the bird is a highly regarded skill by most New Jersey drivers, without strength I am still handless for all intents and purposes.

http://www.lifesolutionsplus.com/swedish-cutting-board-p-106.html

With that said I have invested in some "life aids" as they are known, which are quite useful particularly in the kitchen.  Readers, as you know, I love to cook, and my new found limitations in this department have been most depressing.  But I have not given up.  Here's how I peel potatoes.  I put the potato on a spike, and can then peel it one-handed without it moving around.   This gadget is really useful, and includes a vice for holding things like bowls, cans, bread etc stable.

For the heavier jobs I call on Beloved who is now finally forced to know his way around our kitchen.  He has been very good, but has not taken to the role of sous chef very easily.  Apparently he doesn't require any instruction on the finer points of chopping, mashing, stirring or draining even though his only forays into cooking involve a bowl, milk and a box of cereal.  And he even refuses to say "Yes Chef" when I speak to him in the kitchen.  Truthfully though, Beloved is a tremendous help and we're getting through this latest nightmare together, as we've always done.

The other issue that I'm working on, is trying to get my vehicle modified so that I can safely and comfortably drive with one hand.  Honestly though the process here in New Jersey is so convoluted and apparently a closely guarded State secret that can only be revealed when one knows the right questions to ask. With timely driver assessment appointments so difficult to get, I think we might have more chance of curing cancer in the interim, so maybe I'll just wait.

I'm also attending regular physical therapy sessions to rebuild the leg muscles that were lost to steroid-induced myopathy.  It's a slow and intensive process, but I hope soon to be able to get out of a chair like the spry and agile 41 year-old that I used to be.  It will be nice to be able to climb up stairs again soon as well, without feeling like I have to call 911 to haul me up the last half.

So in summary, I'm getting there and I'm a long way from where I was two months ago, when this latest nightmare befell us.  We're coming up for air and learning to live with this new reality.  We are moving forward as best we can, and that feels good.

***********

This post is dedicated to my mother-in-law, without whom I don't know how we would have coped through this latest episode.  Where would we be without the loving and selfless devotion of those who take on the roles of our carers?  I know I'd be up shit creek without a paddle, so thanks MIL from the bottom of our collective heart.  We love you!

http://cheezburger.com/ravenfaye/lolz/View/1084916480

My Friend Sarah

This year I have spent a lot of time in Liverpool. Yes! The Liverpool of Beatles fame in Northern England. I was surprised to learn that Liverpool's climate actually rarely sees snow because it's temperate maritime and the city is a recipient of warm bands of Gulfstream air. So this is why I've seen daffodils growing in Liverpool's parks in February. Spring comes early in Liverpool.

I've meandered down Penny Lane in March and have been a regular visitor to a wonderful public space known as an "allotment". It's a kind of cooperative where the good citizens of Liverpool may rent garden plots to raise fruit and vegetables or whatever their inner gardener desires.

I've clomped around in garden beds and dug for spring onions of all colors, fresh bulbs of garlic, and delicious little new potatoes. I've picked tomatoes and cucumbers and wondered aloud what to do with them all. I've even picked a pomegranate. A tropical fruit grown in Liverpool? Must be that Gulfstream air.

I've strolled down flower and tree lined rows of allotments. I've shaded myself under an apple tree and I've marveled at the bounty of the most beautiful pear tree I've ever seen. I've sat on the deck of the allotment shed, sharing a picnic and catching the last few rays of summer sunshine and I feel like I never want to leave.

Liverpool Cathedral
Image Source: Visit Liverpool

I've been on some delightful walks through the city of Liverpool, and have enjoyed visiting a 16th century synagogue and other historic landmarks. I've been for a ride on the the local bus, to a street market in Granby, a blighted area of town, which the residents hope will soon become an area of urban renewal. I could certainly see its charms the day I was there.

I have ambled through little villages, that are "just what one imagines an English village should look like." Lushly green, cosy little cottages, crumbling graveyards and medieval churches. I've hiked through gorgeous meadows and woods, and I've stopped for picnics at some breathtaking vistas on the miles of the Dee estuary, a short drive from Liverpool.  I've even been camping in a forest and was treated to an impromptu ukulele concert and singalong around the campfire on a trip to Lincolnshire.  And last but not least, who could forget icecream in the seaside town of Wirral. The town that no longer has a seaside, but my oh my the icecream was still delicious and worth the trek.

Readers, I'll stop here.

I haven't really been to Liverpool.  I haven't really been anywhere this year, except in minds eye. This year is littered with cancelled vacation plans due to medical issues. One crisis after another. I just don't seem to be able to catch a break. And with each new medical crisis I lose a little bit more confidence in being too far from the safety of home and my medical team. And as my confidence erodes, and my physical self gets a little weaker, I find myself leaving the house less. My world is shrinking right before my eyes.

And this is why I am so grateful for my friends.  Today I'd like to spotlight my friendship with Being Sarah. We met virtually after reading, and becoming ardent fans, of each other's blogs.  We struck up an email correspondence which has now morphed into regular Skype chats. A real friendship.

Sarah possesses a wonderful creative spirit and a zeal for life which is quite infectious. Something that has been in short supply around my house of late. But really one of the qualities that I love about her is that she has invited me to see life through her eyes. Sarah also happens to be a filmmaker, as well as an artist, author and blogger, so any opportunity she gets, she will send me short films of her adventures around Liverpool. I'll watch the film and, of course, have a ton of questions for her, which we'll cover in our marathon Skype chats. I like to talk about the details you see.  Sarah even came to visit me in June this year, and I had a wonderful time showing her my favorite spots in New Jersey and New York, and in 3D!

The thing that I seem to need most these days is brain stimulation.  My world is so much smaller now.  I spend so much of my time dealing with all things cancer, so I need to hear about the kinds of experiences that don't involve doctors, hospitals, tests, treatment or otherwise.

I hear constantly that people don't know what to say to me, which invariably translates into saying nothing at all. I hear that people worry about not wanting to bore me or somehow seem disrespectful for sharing the "mundane details" of their lives, which again, usually translates into saying nothing at all. But the truth is,  I can't live my life the way I want to live it, including the "mundane details." And who wants to talk about cancer, or listen to platitudes all of the time? I need to hear about other people's lives.  Even the mundane details.  I crave them. What's happening with your job? How's the family? What did you have for dinner last night? Have you seen any good movies lately? What's your favorite color? Details. Please, I need details.

Whilst not everybody is lucky enough to have a friend who is a  filmmaker,  this idea of sharing the "mundane details" of one's life with a friend who is ill,  whether it be via a film (amateur or professional!), photographs, postcards,  email, snail mail, a real life conversation (shock!) or some other means,  is golden.  It goes such a long way in helping to reduce those feelings of isolation, and can expand a person's shrinking world, if only for a couple of minutes. When I consider the friends that are currently in my life, their comfort in being able to share the details of their lives with me is a common thread and Sarah is tightly ensconced in that small circle. There is no insecurity on their part that I don't want to hear about it.  They know that I do. But they're also comfortable in letting me talk as well.

And so dear Sarah I say to you;

Thank you for the gift of your friendship at a time when I truly wondered if making new friends was even possible. Thank you for allowing me to talk when I need to. Thank you for giving me these wonderful glimpses into your life. Thank you for being there for me.
You enrich my life more than you know.

Thank you for just Being Sarah.

And for these wonderful films!

1. Granby 4 Streets

2. Spring Begins

A day of boating on the Jersey Shore with my friend Sarah.

Photo credit: My dear friend Jo, June 2011

*******

This post is dedicated to  Metastatic Breast Cancer Awareness Day and the friends and family who support us through thick and thin.  There's a blog post for each and everyone of you. 

A Picture

Sometimes a picture is worth a thousand words.

It's official.

At the ripe old age of forty one years old, I now get the best parking spots. Once I can drive again.

October 13th is Metastatic Breast Cancer Awareness Day.  Click on link to explore ideas and activities.

Breast Cancer Awareness Jersey Shore Style!

As you're all too well aware the last month or so for me has been particularly difficult in dealing with my illness.  Living in the suburbs of New Jersey,  life can feel a little bit lonely sometimes, and I'm so thankful for all the support I receive from my cyber-community, as well as the unending support from family who continue to just be there for me in more ways than I can count.

But from a societal standpoint, and as someone living with the never-ending challenges of a metastatic cancer diagnosis, I often wonder why it is that I continue to just feel this unnerving sense of isolation and increasing dread that there is very little understanding by the ordinary person of the realities of what a breast cancer diagnosis really means.

I guess this item, received in my mailbox this week, brought it all home, and eureka I got it!

This is how "In Jersey / Jersey Shore Magazine" depicts what they think is important for the women of the Jersey Shore area to know about breast cancer.

First the cover of their "Special Breast Cancer Awareness Issue".

Second, the contents.

On page 32 we learn about Pat Battle surviving (past tense) her "battle" (nice use of double entendre) with breast cancer.  Another celebrity breast cancer story.  Funny how they all seem to be good news stories;  about how their mammograms saved their lives, and how they've all gone on to embrace the mantle of triumphant survivor after so-called successful treatment.  And that's the end of the story, as is always the way.  I guess no one wants to read a bad news story, say about a metastatic breast cancer diagnosis?  Might not be needing the pink pashmina for that photo shoot.  Or hair. Or breasts. Or ovaries.  Or other body parts or organs or other semblances of normal life you might be fond of.

On page 42 we get what is essentially an advertorial for Dr Deutch's marvellously innovative and oh-so-cosy breast imaging center called HerSpace. Poignantly, we're informed that Dr Deutch also recently went through her own breast cancer crisis, but details are scant at the behest of the good doctor, as she wants to focus on her patients.  Patient focus is a good thing especially when "Deutch does describe her practice as a "niche" practice because it operates on a fee-for-service basis, meaning it doesn't accept Medicare or private insurance plans."   That "story" got 5 pages out of a 63-page issue.

On page 52 we're treated to a Tickled Pink fashion spread of glossy made-up survivors in their breast cancer charity of choice t-shirts and then bedazzled in all manner of pink ribbon accessories and jewellery all available for purchase at listed stockists. As for the copy; here's my personal favorite..."showcased here in an array of pink items, they show a verve and vitality that is the essence of the spirit of all survivors...." Nothing says verve and vitality like a $139.95 Sparkle Strong Breast Cancer Survivor Necklace I guess!

And last but not least, "Amazing Beauty Tips for Chemo Girls", where two local women have co-authored a book (available for purchase from Amazon and the like) chock full of beauty pearls of wisdom for all us "chemo girls".  Shame on me. I hadn't really thought about pencilling my eyebrows in today.  But I do hope they have a tip for dealing with the thrush that has taken up residence in my mouth this week.  How can you get that just squeaky clean feeling when your mouth is coated in white crap, and ulcerated from the side of your mouth to halfway down your throat? Will I still be able to wear lipstick?

The point about this snarky post is important.  This is what we; women; are being fed on an almost daily basis with respect to breast cancer awareness, and examples like this magazine, contain absolutely not one iota of useful, educational, scientific, newsworthy, actionable, impartable or realistic information about breast cancer, period. But there were plenty of coupons for pink products and lists of stockists.  And this magazine goes out to every household in my county and surrounding areas!  How have we let "breast cancer awareness" come to this? No wonder we're not getting anywhere in the fight to eradicate this disease.

Meanwhile this week, as well as railing against this magazine, I've been dealing with the gift of steroid-induced myopathy and a nasty case of thrush in my mouth also as a result of the steroids that I had to take for radiation.  So now as well as occupational therapy for my hand, I must also start a course of intensive physical therapy to regain the strength back in my lower body and leg muscles which have withered away to practically nothing.

And I haven't even started my new chemotherapy yet.  I'm saving that fun for next week. What will I wear?

Perhaps all I need is a full face of makeup, and all of this can just go away with a poof of a pink pashmina and a sparkly pink ribbon trinket.  Battle won.  We're all aware.  We're all survivors.  Fist pump!

Out From Under

Beloved and I just celebrated our seventh wedding anniversary. We were married in 2004, whilst I was in the middle of my first treatment for breast cancer. I was bald, just out of surgery, sick from chemotherapy, but we were determined that cancer wasn't going to stop us from starting our lives together as husband and wife. And with lots of loving help from my mother-in-law, we pulled off what I think was a pretty perfect wedding, given the circumstances.

Fast forward to this past weekend, our anniversary and here I am bald and sick again.  The little crop of hair that had somehow miraculously sprouted over the first part of the year, giving me hope that at least I was going to be spared the hairless indignity for a bit decided to fall out in tufts. So once again I sat in the little green chair in our garage, whilst Beloved shaved my head with the clippers that we keep for what now seems like a regular occasion.

Happy Anniversary to us.

This week I finally finished my emergency course of radiation. It's been a very long haul and has taken a lot out of me. Think transformation into a very old woman very quickly.  I've seen some small improvements in my hand, but wont know really whether it will continue to improve or not. Only time will tell. Or whether the radiation has indeed stopped the progression in the nerves to stave off any more damage. Nor whether the next new chemotherapy will work, or for how long, or for what gain. We just don't know. Nobody knows.

The thing is every time I think about my cancer, I feel like I need to make some profound statement to keep raising hell about the state of metastatic cancer, it's research, it's treatment, it's lack of support resources, and for all the crap those of us living with it constantly deal with. But I'm really just getting to the point, where there's no bigger statement that I can make other than this is just my damn life and I'm deeply unhappy about it.

This cancer just directs every part of my life. It keeps me a slave to medications and their schedule. It keeps me a slave to the side effects of the medications. It keeps me a slave to the energy I have on any given day. It keeps me a slave to how I look and feel. It keeps me a slave in a body that I no longer recognize, a hand that no longer works. It keeps Beloved and I slaves to the next bit of news from the next batch of tests and scans. It keeps us slaves to the constant threat of the unknown, which as we keep learning, can change our lives profoundly in an instant.

And it keeps me a slave to the thought that we are just never going to dig ourselves out from under this.

And that's about all I have to say right now.

Planet Unicorn

Ducking, running, weaving, bobbing, falling down, getting back up, managing, adjusting, adapting, screaming, world shrinking, confidence eroding, always moving, always shifting expectations. 

 That's the game of living with metastatic cancer of any kind.

It's been almost two weeks since, after months of excruciating pain, I awoke to find my left eye had drooped and my left hand had become almost completely paralyzed due to my breast cancer.

Since that time I have been receiving emergency radiation, which has sapped me of a good deal of my physical energy. I've also been spending a lot of time lying around contemplating this new reality in which I find myself, staring into space and feeling sorry for myself and wondering how I can possibly move forward and face the next moves in this evil game of cat and mouse.

I feel trapped in a body that I no longer know. I don't see myself when I look in the mirror anymore. I see someone getting tired and old before her time. Tired of constantly getting hit in the head, and constantly pulling myself back up only to be hit again. The toll on my body, mind and spirit is definitely starting to show.

I'm having trouble adjusting to the thought that I'll never really be able to use my left hand again. The hand feels like an alien piece of meat attached to my body and no longer obeys my brain's commands. I think I might be mourning it's loss, and the freedom that it's use offered in being able to live my life in the way that I liked to do. It's loss takes away from so many enjoyments that I don't think even yet I've fully begun to experience or contemplate. I think I might still be in shock over this.

I want to scream, I want to beat my fists. I hate that this has happened. I hate what this wretched disease is doing to our lives. There is nothing about having cancer that has enriched my life - nada. It just takes, and takes and keeps taking. Every time there's a new crisis, Beloved and I must take stock again, to see what we are left with and keep the faith that we'll be strong enough to get through whatever else is being served up. How so markedly different our lives are to our peers. We may as well live on another planet in another dimension entirely, our lives are so far removed from what most people could ever imagine. It just all makes me so sad and angry truth be told. It's simply not fair.

And so now the question becomes as to how long it's going to take me to bounce back mentally from this latest catastrophe and assault to my confidence. Somehow I have to psyche myself back into the the chemo chair. Be a strong and "empowered" patient. Find some blind faith, tempered with a bit of hopeful reality, to try and ignore the fact that at this point we're just going down a list of treatments with the understanding that there is little likelihood of a cure or indeed any guarantees of my ultimate prognosis. More chemotherapy to erode my quality of life just a little bit more. Waiting for the next scan to see if there's any improvement. Or not. Then whatever the next move is after that. Then the next crisis. And so it just goes on. Ad nauseum. No breaks, no end game, just a relentless and exhausting tedious cycle of heartbreak and devastation.

Trouble is no one really wants to hear any of this.

They want to hear that I'm feeling better. That I'm coping with the loss of the hand. That treatments will work for me. That people with metastatic breast cancer can "do well" for a very long time. That I'm feeling more positive about things. That I can get through whatever this disease throws at me. That I'm continuing to fight. That I won't ever give up. That I will remain hopeful, no matter what.

Yeah, yeah, yeah I hear all of that, but right now I'm reserving the right to wallow because I need to. My brain is just lacking the emotional and physical energy to do much else right now. Perhaps it's just switched into self-preservation mode, whilst the rest of my battered body tries to catch up.

I just want to tell the truth and surprise, surprise life isn't all fluffy pink unicorns dancing on rainbows, no matter how much I wish it were.

WTF

I'm sitting here listening to the latest news of Hurricane Irene.

Thing is though it seems like we've already visited the eye of the perfect storm earlier this week. And an earthquake! Seriously!

After a disastrous trip to Colorado that we had to cut short and come home, I woke up last Saturday with a newly droopy left eye. This, along with escalating pain and decreasing function to my left arm which I've chronicled here before. After calling the doctor and trying various pain killing medications, the decision was made to admit me to hospital in an effort to control the pain and try and investigate the sources further.

Oh and I should also mention too, that by Wednesday morning I woke up to find my left hand was now almost completely paralyzed. Essentially a piece of meat. So this is on my mind as well.

After being subjected to a battery of tests, the doctors concluded that these latest issues have come about through new skin metastasis and infiltration of the nerve line controlling my left eye and arm. No mass to speak of, but a shadowy specter moving across important nerve lines is what it looks like on the scans. A "coating" of the nerves if you will. Hands up who knew breast cancer could do this?

So I've now changed chemotherapy regimens and am undergoing an emergency course of radiation to at least try and reverse some of the nerve damage to the hand, in the vain hope that I might be able to regain some function beyond what is essentially a fairly useless lobster claw at the moment.

To be honest, I'm just feeling very tired and a bit overwhelmed right now. What does this all mean going forward? How do I cope with the complete loss of the hand? How will I make dinner, something I love to do, amongst other things. How will I ever wear another article of clothing that's not an elasticated waist, or doesn't have buttons? I know I'm not the first person this has ever happened to and who deal with much worse, but still, it just seems like a lot to have to think about and I can't quite get my head around it.

I don't really know what to say at this point. As a friend quipped this week my life seems to be reading like a bad movie script. New mets, chemo, hospital, earthquake, radiation, paralysis, hurricane; did I miss anything? Locust plague, Armageddon?

But in the spirit of my usual rants, here are some assorted Why/What The F$cks that stayed with me after this week's escapades;

WTF

• If I'm in hospital with an accessed port hanging out of my chest, WTF is a nursing assistant rooting around in my arm for a vein to draw blood from me at 4am in the morning? And why am I arguing with her?

• Ditto for my MRI tests. WTF was no one available to access my port to inject the MRI contrast?

• When I'm whacked out on pain medication it's very difficult to have a serious consultation with a specialist doctor. Also don't be surprised if I insult your work. I'm off my face! WTF?

• Pain medication causes severe constipation. WTF is it so hard in the hospital to get anything representing one of the main food groups and anything that might resemble food fiber? Shouldn't a nutritionist on the oncology ward be making some automatic decisions for you about food choices, since you're so whacked out you barely know your own name, let alone think about whether you should eat broccoli or spinach. But I do want to point out that the hospitals Dunkin' Donuts was open 24hrs! That's good because I needed a jelly donut!

• When I got home, all I could think was that I didn't have enough clean underwear to last me through the hurricane. WTF am I worrying about this, my beloved asked me? I don't know I just am! Note to laundry gods aka Mother in Law. Thank you for curing that little WTF!

• When doctors say that chemotherapy is "well tolerated", particularly in the metastatic setting, WTF does this really mean? That you might be able to get out of bed if you're lucky? That it won't necessarily kill you? What does survival with metastatic breast cancer really mean anyway?  Seems like the same issue's on The Assertive Cancer Patient's mind as well this weekend....

• If we're serious about downgrading breast cancer to a "chronic" disease, then WTF aren't we pulling out all stops to understand and treat metastatic breast cancer. Because this is the one that really F$cks you up, and then likely kills you.  

Hurricane indeed. Yawn.

P.S. Just in case this post isn't clear, I'm now at home and resting comfortably.  Latest crisis being dealt with.

Am I A Tough Girl?

They say there's no such thing as bad publicity, but recently my other blog Can-Do Women, was mentioned by Huffington Post contributor Peg Aloi, in Tough Girls: Do They Still Exist?


Apparently there's a dearth of tough "gals" out there and women are simply "girly" again.  And "the blogosphere proves it!"

Peg writes;

Maybe it's the "new" (crappy) economy, or our fear of the imminent zombie-vampire-Tea Partier apocalypse, or the realization that teaching our kids self-reliance instead of whiny entitlement really is the best approach to parenting, but there's so much emphasis on, well, ultra-femme domestic activity these days. This weird retro world of cooking, heirloom tomatoes and Jane Austen is starting to feel a bit smug and smothering. Where's the fun?

My blog's mentioned under the auspices of "heirloom tomatoes" and whether this is "fun"?

Well readers, you know I couldn't leave well enough alone.  Here's my retort to this brassy little article;

Thank you for mentioning my blog under the auspices of "Heirloom Tomatoes" (www.candow­omen.wordp­ress.com) in seeking to answer the question of whether tough girls still do exist? 

 Funny, I've never thought of myself as particular­ly "girly" or indeed "anti-femi­nist", although I do love to cook. And in answer to your question as whether I may personally qualify as tough? Before you or your readers judge me, perhaps I should include a link to my other blog; the one where I blog about my life as a women in her early forties dealing with metastatic breast cancer (see http://can­cerculture­now.blogsp­ot.com/201­1/01/can-d­o-spirit.h­tml) 

Your post reminds me that both my blogs have been sadly neglected of late due to all the "fun" my illness has been serving up to me, leaving with very little time, ability or gumption to pursue the things I really like to do. Like being a tough bad-ass breast cancer activist blogger, as well as someone who enjoys a bloody good heirloom tomato.

 Tough "gal"? You be the judge.







Courtesy of Past Expiry Cartoon

Look At Me

"You just wouldn't know it to look at you",  clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.

I've heard this expression many times, and I'm never quite sure how to respond.  The thing is, pain is for the most part invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion.

My friend Being Sarah, author and fellow blogger sums it up perfectly in her book of the same name, Being Sarah;

"Breast cancer can be like this, you don't look ill, but you feel maimed and emotionally depleted."

Actually,  I'm quite sure this is true for most cancers and other debilitating illnesses.

But I'm definitely feeling maimed and rather emotionally depleted right now.  I do seem to be caught in that never-ending cycle of one-thing-after-another. For the first time,  since my magical train journey through pink lollypop land began way back in 2004, I've begun to experience side effects from the cancer that resides uninvited in my body.

Up until now, most of my ailments and other physical complaints, have been (in)directly attributable to treatment. Surgeries, radiation, chemotherapy have all brought with them a wonderfully diverse and at times surprising cornucopia of side effects. And generally I've been able to take medication or adjust treatment to combat these side effects, be it pain, nausea, vomiting, fatigue, neuropathy, gastrointestinal upsets, hair loss, low blood cell counts and associated conditions, weight gain, weight loss, allergic reactions, unidentified-but likely-battered-immune-system-induced-afflictions, mood swings, hot flashes, night sweats, etc.  You name it I've probably had it and I've dealt with it one way or another.

Unless we're talking about hair loss, I doubt anybody would know to look at me that I was experiencing any of these side effects. Unless I tell them.

But now I find myself in a different pickle. The cancer has determined to stealthily work on robbing me of the use of my left (and dominant) arm.  Symptoms have been very slowly appearing over the last few months, but have started to escalate recently, defying the logic of my last scans which showed my disease to be stable.  Exactly how the cancer is accomplishing this theft of a much loved limb, is a hotly debated mystery soon, we hope,  to be unveiled by the wonders of high resolution MRI technology.  (Please no armchair diagnoses here, thanks!)

I can still use the arm, but now only in a quite limited capacity.

Tingling finger and arm nerves.

Numbness that is slowly taking over my hand. One thumb and two fingers now offline.  And half an arm.

Depleted strength and an almost atrophied set of upper left arm muscles.

Upper back muscles constantly firing and twisting themselves into knots.

Constant nerve pain running down the entire length of my arm.

Frequently interrupted sleep and pacing the house until painkillers kick in to coax me back to sleep.

Daily tasks now requiring assistance, adaptation, or not performed at all. So far the list includes cutting things, like the pork chop in the restaurant the other night, fastening the straps on my favorite sandals, handwriting, toothbrushing, eating with a fork or chopsticks, driving, lifting my dog, grocery shopping, laundry and so on. Things are starting to slip. Many of the day to day activities that I used to enjoy, are now tarnished by this pain and loss of strength and dexterity, and I can feel the slow decline of function with every passing day.

Luckily,  I have a good support system when it comes to third party assistance. But I hate to ask. It makes me frustrated and angry. Why do I need to ask my beloved to cut up my steak, like a small child? Why do I need to ask my nearly-senior-citizen-bless-her-heart- mother-in-law to help me with household chores? Shouldn't it be the other way around? This seems to be against life's natural order.

But the loss I am feeling the most keenly right now, is my inability to type with both hands, and sit at the computer for any length of time. This only aggravates my pain level. But I'm a full-time blogger, I regularly tell my doctors. How can I blog with this pain? How can I blog if I lose the use of my arm? How will I cope?

And so, I find myself exploring different ways of coping, read blogging.  One-handed on an iPad seated in a comfortable chair (working pretty well I would say), voice recognition software (not so much), video blogging (maybe!).  Trying hard to concentrate under the fog of medication, the ever present chemobrain and constant nagging pain. Wondering if we can identify the source of the pain and treat it with a palliative dose of radiation, or something.

It's getting more difficult, and I'm definitely slower and I DO need some assistance.  I'm certainly grumpier, frustrated, scared, and in pain, but you wouldn't know it to look at me.

Chest Pains

Prologue:  This is a piece I wrote back in May 2011, several days after a second visit to Pink Bank Hospital emergency room in a matter of months.  This was very hard to write, and has taken me quite awhile to decide to publish it.  But there's something I want you to know........... 

Penned: June 1, 2011

I want to write about what happened to me last week. I don’t know if I can do this publicly.

It scared the crap out of me.

My husband was  away on business trip.  I was by myself.  It was Thursday afternoon. May 26, 2011.

Feeling a bit tired, I lay down on my bed and napped for about an hour.  After waking,  I got up and felt a pain in my chest area.  Sort of like I’d been sleeping in a weird position and the muscles had yet to properly straighten out.

But the feeling didn’t go away.  In fact it started to escalate.  My chest tightened, I began to feel slightly nauseous, and it hurt when I breathed in.  My abdomen became swollen and I felt full despite having eaten very little that day.

I started to feel very frightened.  Much of what I was feeling, was similar to how I felt back in March when I had the heart issue.  But this was different,  in that now my breathing seemed to be involved in a way that was painful.

I sat on the couch trying to convince myself it was nothing.  But experience told me otherwise.

I debated who to call first.

Since my husband was away, the closest people were my in-laws.  I knew that they would jump to it, and do whatever I asked.  But all I could think about was how much my call was going to freak them out.

Then I thought about calling my friend who is a nurse.  But she probably wasn't home and I didn’t want to leave her a message.

I realized my doctor’s office was now closed, but I could reach the on-call doctor.  I reached the answering service and when they asked me the problem to relay to the doctor, I heard myself say “chest pains”.  There, I’d actually said it.  Chest pains.  Then I started to cry.  I was alone and I was frightened.

The on-call doctor telephoned me within about five minutes.  Chest pains? Yes. As he was questioning me I broke down and cried like a blubbering mess.  He was calm and very nice, and quietly suggested that I needed to get myself to the emergency room and did I have someone to drive me?  Yes I did.  He said he would call ahead and let them know I was coming. Chest pains.

My mother-in-law arrived and we immediately set off.  She was driving like a maniac and kept asking me how I felt.  Chest pains? How are the chest pains now? I had to tell her to stop talking, slow down and just get me to the ER in one piece.  We drove the rest of the way in silence, whilst I sat there quietly freaking out. Chest pains.

Upon arrival at the ER I said “I have chest pains” and I was immediately asked to fill out paperwork.  Thinking when you are in this state is almost impossible.  Then they told me to take a seat and wait for the triage nurse.  But I’m freaking out, I have chest pains.  Please take a seat.  I sat near the station desk, and heard them talking about me.  I had become Chest Pains.  Not a person who is extremely upset and frightened.  Chest Pains.

After what seemed like an eternity but was probably only five minutes the triage nurse called me in.  Take your purse off my desk she chided me.  Then the questions.  The jaded questions.  Chest pains? Look at the smiley face chart.  Describe your pain on a scale of one to ten.   Describe your pain. DESCRIBE YOUR PAIN PLEASE.  I break down and sob.  I can’t speak.  I don’t know.  All I know is that something is very wrong.

Something inside the nurse softens.  Honey I’m sorry I know this is hard but we’ll figure this out.  I’m just going to write that you’re at a “9”.  Chest Pains is at a Nine.  Now I’m going to try and find you a bed.  Makes a call.  I have Chest Pains here who’s at a Nine, can you please clean out Number 6 for her.  Chest Pains. Nine. Number 6.  Where am I?

Now she feels really sorry for me and walks me back into the ER.  Number 6 isn’t ready, so I am placed on a gurney in the hall.  Chest Pains?  Yes.  Monitors are attached.  Number 6 will be ready soon.  Please go to the bathroom and put this gown on in the meantime.  I leave my underwear on.

I wait.  Two hours later I am shown to my “room” and I become Number Six.

More monitors.  More needles.  More Doctors.  More Examinations.  No Answers.

11.30PM.  Number 6? Chest Pains? Cat Scan? Yes.  Finally some answers.

1AM.  I hear the Doctor discussing my case.  Number 6? Chest Pains. Yes.  Cat Scan.  Less than 10%.  Good.

1.30AM.  Doctor stops in.  You have a small partial collapsed lung. A pneumothorax.  We’re going to keep you on oxygen overnight and watch you.  We hope it will just correct itself.  We don’t know why it’s happened but it doesn’t appear to be lung mets.  This is good news.  It could have been much worse.

Much worse.  Yes.  That’s true.  Just not today.

2AM.  Would you like a sleeping pill? 5mg or 10mg? 5mg please. Number 6. Chest Pains. 5mg.

8AM. Number 6? Chest Pains? Chest X-Ray.

9AM.  Dr Cuteness appears at my bedside and takes my hand.  Rachel I’m sorry you had to go through this. I don’t know why it happened.  You can go home now and I’ll talk to you on Wednesday.

Rachel.

The first time since the ordeal began that anyone called me by my first name in a way that connected me with what I had just gone through.

Rachel. I had chest pains.  I had a partial collapsed lung.  I have cancer. I am scared.

MY NAME IS RACHEL.

Epilogue:  The pneumothorax was small enough that I did not require a surgical intervention and so far appears to have healed on its own.  

Anna Rachnel is a pen name I created for myself when I first started blogging in 2009.  I was reluctant to reveal my real name due to a severe case of cyber-paranoia.  As the blog became more widely read, I started to question whether to keep the pen-name.  

What purpose was the pen-name serving, other than as a kind of security blanket?

Today it's time to shed the security blanket.  I have found my virtual identity.  I have found community.  I have found friendship.  I have found trust.  

Anna Rachnel has served her purpose.

My name is Rachel.  Rachel May.  I am named for my great grandmother.

This is me.  Rachel May.  June, 2011

Let's Talk!

I'm still kind of on summer hiatus, but can't keep away from the blogging for too long.

On Monday night I "attended" a Tweet chat on Twitter called #bcsm (Breast Cancer Social Media).   Basically, it's an hour long event on Twitter every Monday night at 9pm EST, and is attended by anyone who's interested in talking about breast cancer.  If you missed it or would like to know more, here's a round-up and transcript of last Monday's chat by @jodyms who co-hosts and blogs at Women With Cancer.  You can join the chat just by adding #bcsm to your tweets,

One of the really great things about this forum, is that it's also attended by health care professionals, and is a fabulous opportunity for patients, like me, to connect with these folks in a forum that doesn't involve an invoice or a fight with the health insurance company.  It's really interesting to get a perspective from the "other side of the desk" so to speak and to also share mine.

After the chat, I read the transcript and was struck by a comment from one of the doctors in attendance.

More and more oncologist see Stage IV as a chronic disease that one can live a really long time with -- QUALITY TIME #bcsm

Let me just preface by saying that I completely understand that the comment came from a place of kindness and compassion, perhaps to try and ease the fears of those in attendance who are living with Stage IV disease.

But on the other hand the comment did cause my blood pressure to spike somewhat.


Is this really the belief of most oncologists? Because if it is then then I'm putting my hand up to say that there may be a DEEP chasm from what oncologists believe to what metastatic cancer patients are really thinking.

Firstly, I don't see metastatic breast cancer as a "chronic disease".  I believe that to refer to it in this manner does a huge disservice to the work of the metastatic breast cancer advocates.  The "chronic disease" argument invalidates our concerns about current treatments and our very real fears of dying of breast cancer, and completely hides the fact that metastatic breast cancer patients still do not have a game changing drug designed to specifically prevent initial and new metastatic tumors. And the same could be said for many other Stage IV cancers actually.

What we do have is a long list of incrementally and temporarily successful drugs designed to shrink tumors, none of which provide a cure, and none of which are known to actually prevent new metastases.  The drugs buy us time, more for some patients, less for others, and there is no way to know which one's will actually work, for whom, and for how long.  So we just keep working down the list of drugs until we perchance get the miracle of N.E.D. (No Evidence of Disease), or as is more likely, we exhaust our options and then say enough is enough and end our lives apparently and invariably with "grace and dignity".   Is this really what "chronic disease" looks like?

In the metastatic breast cancer setting,  how is a "really long time"defined and what does "quality time" really mean?  I suspect that if a patient were asked, their definitions and understanding of these terms might be wildly different to that of their medical team and indeed that of family and friends.

"A really long time" in the world of chemotherapy drug development is termed "overall survival" and is generally measured in months, not years.  To the statistician, a metastatic breast cancer diagnosis might mean average survival of about three years.   To the actual patient, we say "screw statistics" and hang on for dear life to the belief that we're going to be the ones who beat the odds.  And some of us do, but there's also many that don't.  For me, the question of what a "really long time" looks like is something I prefer not to dwell on.  Hopefully it means years, maybe even a decade or two or three, but no one really knows.  I just hope that it is a "really long time".

And "quality time"?  Quality time to me means

• not having to go to chemotherapy every week
• not having to obsess over my bowel movements
• not having to wrangle with Nurse Ratched or Nurse Useless
• not having to deal with mystery secondary illnesses that of course could not possibly be related to cancer treatment
• not having to worry about cascade side effects of drugs taken to combat chemotherapy side effects and cancer symptoms
• not having to waste time dealing with health insurance and billing issues
• having a left arm that actually works and doesn't cause me pain 24/7
• having hair to brush and style
• not having to be ruled by an alarm clock and pills that must be taken on time
• not having my life put on hold every three months whilst we wait for scan results
• being able to sit in the sun without having to worry about chemo-induced sunburn
• being able to go on vacation without having to think about proximity to hospitals et al
• not having to ask family members to help me with household chores and grocery shopping
• not having to worry at forty years old, about the same issues that concern senior citizens
• having the energy to stay up past 10pm
• not having to worry full stop

Now there may be many of you who disagree with my reaction to this particular comment.  And that's fine.  I welcome the discussion.  We can all learn from each other.  So let's keep talking about this.  Let's add our voice and be heard in forums like #bcsm.   Hope to "see" you there for the next chat.

Every voice matters.

Now back to summer hiatus and some QUALITY time !

The Poetry of Stench

In the 1970's Susan Sontag, in her tome Illness As A Metaphor, wrote;

"Cancer is a rare and still scandalous subject for poetry; and it seems unimaginable to aestheticize the disease."

Ponder on that for a second.

Well readers, with the promotion of Susan G. Komen for the Cure®'s new perfume line "Promise Me", I think there can be no doubt that breast cancer has indeed been fully aestheticized......in a bottle.

Add in the perfume designer's commentary.....

... and I think we can safely say that breast cancer and poetry also mix.

Last week, Nancy Brinker appeared on HSN, the Home Shopping Network, to sell this latest pink breast cancerish incarnation.  Here's the video.  All mind-numbing fifteen minutes of it.  Watch it and delight in statements like;

"....so the woman that wears this...she is constantly kind of intact..........(Editors Note: hastily adds and tapers off)....with that emotional feeling...."

Once again, Komen's timing couldn't have been more perfect when I think about what I was doing whilst Nancy Brinker was hawking cheap perfume that smells just "like you imagine pink to smell".

Whilst people were falling all over themselves to buy Nancy's boxed set for the bargain price of $39.90, I was in the emergency room of PinkBank Hospital being treated for a small, but very frightening, pneumothorax.   I couldn't smell much  because I was hooked up to oxygen all night whilst I spent the night in the ER.  The lady in the room next to me, six years out of a breast cancer diagnosis, was being investigated for possible brain metastases after dropping a knife whilst preparing dinner.

By the time my ordeal was over some 24-hours later,  all I could taste and smell was antiseptic, saline and that radioactive crap they pump into you in order to take a CAT scan.  Too bad I wasn't wearing Komen's fragrant version of breast cancer because instead my experience could have smelt like this;

Floriental and sensual no less!

There were only two good things that came out of my emergency room visit last week. First, my pneumothorax was not caused by lung mets, and second, I got to visit with Dr Cuteness again.  (Beloved wanted me to push the friendship agenda again, but I declined,  preferring to keep our relationship strictly curative......of spontaneous cardiac-thoracic issues, that is).

And the only good thing to come out of Komen's latest smelly business venture is that it serves to highlight just how stupid Komen obviously perceives "us" to be.

A fragrance designed to invoke the feelings of positive hope, energy and love to help Komen's branded breast cancer cause?

No Nancy, we've got your number.  It's at the bottom of the tv screen.

P.S.  I typed this blog-post with one-hand, because the tumors in my left brachial plexus make typing with two hands a very painful exercise right now.  I'm hoping a course of radiation will help bring me some relief on that score.  And there's nothing about that which reminds me of the scent of pink peonies, wild orchids or rosewoods!