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!

Breast Cancer Action

I was honored recently to be asked by Breast Cancer Action to help them with their annual fundraising campaign.  At first I was hesitant, because as a blogger I value my ability to speak independently, and I wondered if such an association could somehow hinder that.  But since I have donated to Breast Cancer Action for many years, even prior to starting this blog,  I'm proud to publicly support an organization that I admire, trust implicitly, and whose values align with mine.  

My essay "I refuse to quietly succumb" is featured on BCA's Think Before You Pink blog, and explains why I am a regular donor to this worthy organization.  If you are pondering a year-end donation, I do hope you might consider Breast Cancer Action in your plans. 

There are also other charitable organizations listed on this blogs right side bar which I invite you to explore, particularly those dedicated to metastatic breast cancer research and support and listed under "Metastatic Breast Cancer Resources".  

Donate 

 

Favorite Things

Last year, in a fit of seasonally inspired writing, I put the breast back in Christmas, and counted down my favorite Breastmas gifts.

This year we're doing things a bit differently, and I'm taking a page out of Oprah's book and counting down my Favorite Things.

1. Love Stoop

This is a dish my MIL invented to keep Beloved and I in easily-prepared nourishing meals whilst my appetite is MIA, and fatigue and gimp hand keep me out of the kitchen. Essentially empty the contents of your vegetable drawers and canned goods into a pot, add a couple of Brontosauraus-like meat bones,  and some good stock, boil and simmer, pour into containers and freeze.

Uh-oh I only have 4 containers left.
Better get MIL on the case

2. Udderly Smooth Udder Cream

Legend has it, this is the same cream used to keep cows udders healthy.  Mmmm not too sure where to go with this, suffice to say this has been the best moisturizing cream for hands and feet in my entire cancer career.  Buy it by the tub at your local pharmacy.

How nice and smooth does gimp hand look?

3. Spirometer

I literally suck on this thing at least five times a day.  It keeps my lungs exercised and inflated (as opposed to collapsed), avoiding the need for an Operating Room date with Dr Cuteness.  I love this thing.

Suck harder!

4. Snoods

Certain bloggers have been keeping me in artisanal snoods (and gloves!).  They keep my head warm, look cool, and allow me to moonlight as an "Occupy" protester.

Striking a strangely Freudian pose

5. Elasticated Waists

I have a gimp hand.  I challenge you to try and pull up a pair of jeans, pull zipper and fasten button with one hand.  Remember with bathroom breaks you'll have to do this several times throughout the day.  Enough said.  Elasticated waists are the bomb!

Perhaps not my best look!

6. Panini Press

The best thing since sliced bread for the one-handed cook.  Not only panini's but also chicken cutlets and little steaks.   Love, love, love and everybody gets panini presses!  No, sorry that was a joke.

Between this and Love Stoop we are well fed!

7. Miralax

I've said it before and I'll say it again for those of us dealing with Mr Constipation.  Miralax, in the convenient economy size, has literally saved my ass.  Do yourself a favor and add this item to your walk-in medicine closet.

You know it makes sense.

8. Dog Naps

Always at my feet under the desk.  Snoring a little, farting a bit, dream kicking his little legs........

My trusty sidekick doing his bit for the war on breast cancer

9.  Breast Cancer Social Media

Tune to Twitter every Monday, at search term #BCSM, for breast cancer topic-oriented chat with an amazing group of people. And all the other wonderful Bloggers and Commenters who make up this incredible virtual community.  I can't do this without you.

10. Beloved

What more do I need to say?

I Heart Beloved

Merry Christmas

And

Happy Holidays

To You All

xxxxxxxxxxx

The Bird Is Free

The State of New Jersey has finally given up its state secrets on drivers with disabilities, and I am behind the wheel once more.

After undergoing a formal assessment from a state-licensed driver evaluator who are housed in occupational therapy facilities in major hospitals, and who are rare as hen's teeth by the way,  I was declared medically disabled but able enough to receive a prescription for adaptive equipment for my car.

Having lost the use of my left hand, my only option is to drive one-handed.  As a result I was unable to operate the indicator doovelacky on the left side, although the use of indicators seem to be optional for most NJ drivers anyway, she says with tongue firmly in cheek.

So now, as you can see from the photo, there is a metal contraption that attaches to the indicator on the left side, which then crosses over the back of the steering wheel, allowing me to operate it with my right hand.

The steering wheel was also fitted with a turning knob so that it's much easier for me to steer with one hand.  It takes a little getting used to but no major accidents yet so it's all good.

It's taken a long time to get this little bit of freedom back and it feels great, although I'm sure I'll be sick of driving again in no time.  MIL's pretty happy too that she's no longer Driving Miss Daisy.

Now all I need to work on is being able to flip the bird with my spare gimp hand.  A must-have skill for for handling the extraordinarily polite New Jersey drivers.

Breast Cancer and Middle School

My original intended purpose for this blog was to be an observer  and commentator on all things (breast) cancer culture, in a way to try and make sense of my own experience at the same time.  It still doesn't make sense by the way.  Today's post is going back to this blog's roots and asking some tough questions, so I'd ask that you suspend your emotions and read the entire post before commenting.  And please do comment, because I'm very interested to hear your thoughts, whether you agree or disagree.

This article appeared in the December issue of one of our local magazines, The Journal. It's about a local middle school's efforts to raise funds for a local breast cancer organization, Breast Intentions, that provides financial assistance to women in need who are going through breast cancer.  In fact, the charity they support was founded four years ago by two local fifteen year old high school students, an admirable accomplishment indeed as well as a worthy cause.  It seems clear that the purpose of this story was to congratulate these middle-schoolers on their fundraising accomplishments, as well as supporting the good work of the beneficiary charity.

And for most readers, the feel good story would stop there.  Well done kids!

But, of course, I see things a little differently.

Middle-school involvement in the pink breast cancer movement, be it fundraising events like this, education programs within the schools, pink ribbon decorations, flags and signs, or indeed civil liberty legal actions to preserve students' First Amendment rights to wear "I (heart) Boobies" bracelets, certainly seems to be increasing, as does the associated media coverage. Rather than making me feel good, it's making me a little queasy and rather uneasy.

Firstly, I'm uncomfortable that breast cancer, the disease, has been elevated by slick marketing to a status that screams to the general public that it is far more important than other major killers of women, like heart disease or lung and other cancers.  (See http://www.cdc.gov/nchs/fastats/lcod.htm)

And in reading this article I couldn't help thinking about all the kids, who took part in the pink parade in their tie dyed pink shirts, and whose parent or other significant person, was at home suffering from some other kind of cancer or catastrophic illness.  How did these kids feel about all the attention (and money) being paid to breast cancer?  Did they have a voice?   Were they able to express their feelings of discontent and frustration?  Did they even think about it?  I really wonder.  Do the schools have fundraising events and parades of this scale for other Health Observances? What kind of message are we really sending to these middle schoolers?  That breast cancer is the only disease that matters?

In my limited research of this topic, I came across several charitable organizations that offer education programs for adoption by both middle and high schools.  Here's an example of one program offered to Wisconsin schools by an organization called the Breast Cancer Family Foundation.

This particular organization educates young people on the premise of "proven risk-reduction strategies" that apparently may prevent many types of cancer, "not only breast cancer".  The program, specifically aimed at breast and testicular cancers, focuses on "self-examination, diet and lifestyle".  

Whilst I can certainly see merit in encouraging kids to maintain a healthy lifestyle for all manner of reasons and to be aware of their own bodies, but to suggest that these are proven ways to prevent breast cancer is just not evidence-based.  The point being that we still don't really know exactly what causes breast or other cancers.

I'd make the same point about self-examination and early detection.  These are methods of cancer diagnosis.  They don't prevent or cure cancer or categorically save lives.   So why are we pushing breast cancer education curriculums that have little scientific basis to school kids?  Where's the value in that, other than perpetuating the cycle of misinformation all in the name of pink breast cancer awareness?

For the horsey girl in your life

If this is indeed happening on a wide scale in schools, then I hold grave fears for the future generation of breast cancer activists.  Indoctrination to the pink party line is starting earlier and earlier.  What's next?  Breast cancer programs for kindergartners?  Don't laugh, I don't think it's beyond the realm of possibility at this point, and we already have the toys!


On another note, in the U.S. there's an ever present debate about the extent to which there should be a mingling of church and state, particularly within the public school system.  Readers,  I put it to you that now we have the mingling of breast and state within schools, for better or worse.  Whilst I applaud any school's efforts to encourage altruism within their student body, and I fully support including cancer as a topic within any health education curriculum, I'm uncomfortable with schools' elevating breast cancer to this pink extent.  As Ronnie Hughes of the Being Sarah blog, so eloquently put it;

"Pink's not wrong. It's just not right enough."

And that's the problem.

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

So what do we want middle school kids to know about breast cancer, or cancer in general?  What do they need to know?


Is it right to popularize breast cancer over other cancers and diseases within the public school system with events like the one in the article?


Is this even an issue?


Please comment, I'd love to hear your thoughts.

Show "n Tell

What could be worse than a 27-hour return train journey turning into a 40-hour odyssey and then getting lost in Newark Train Station at two o'clock in the morning?  I'll tell you what.  Our glorious week long vacation from our problems in a tropical paradise coming to an end, that's what!

The lid doubles as a step up to the top bunk.
Golden rule: Always close the lid!

Where to start?  First, the train journey.

As you know I ended up having to take a train down the east coast to Miami under orders from Dr Cuteness.  Everybody immediately equates long distance train travel with romance, goodbyes to sweethearts, handkerchiefs waving from the windows, and wires home announcing one's safe arrival (thanks KOB for this vision!).  However any thoughts of romance were quickly dashed when I was confronted with my substitute home for the next 27-hours.  Now don't get me wrong, the sleeping accommodations were perfectly acceptable.  It was just the ablutions setup that I had a problem with. Yes. Right next to my bed.  No division here whatsoever.  I think the dogs have the theory right in this regard.  Never eat or sleep where you....ahem....toilet!  Okay, okay it was still better than the setup in coach.  One toilet for how many passengers?

The trip down went pretty smoothly and I quite enjoyed going to the dining car to take my meals on the plastic Amtrak china, and also reveled in the potluck of table companions one was assigned to.  The two elderly spinster sisters whom I mistook for a pioneering lesbian couple from New Jersey were a delight on the first night.  On the way home I ate breakfast with a heavyset man from Philadelphia who told me how much he enjoyed vacationing in spots that espoused "family values".  I took this as my cue to keep my talk of atheism, pro-choice and women's rights in general to a minimum.

Then the inevitable question.  "So, are you winning your war?" It really was too early in the morning for this and I was honestly confused.  War on what?  My personal war on what is really meant by the phrase "family values?" "You know, your health WAR."  Oh.  Buzzkill alert.  "Because I'm a strong believer in positive attitude and the metaphysical, and I can tell just by looking at your face that you're winning this war.  By the way my friend had IT and he died after only seven months."  Nice.  Oh for the love of all things family values.  Fortunately my sheer physical exhaustion and need to shovel more food into my mouth saved this rather sweet man from having his head bitten off in a bloody attack befitting a scene in the movie, Wolf Creek.   "Excuse me, I need to use the bathroom next to my bed.  Enjoy the rest of your trip sir."

I think I'll summarize my experience of this train journey by divulging some Golden Rules of sleeper car train travel.

Rule #1:  Before attempting to use the toilet next to your bed, check that all curtains are closed and tightly secured.  On BOTH sides.  Don't want to give those folks at West Palm Beach train station a show they didn't pay to see, now do we?

Rule #2:  Unlike Flight Attendants, Sleeping Car Attendants expect to be tipped.  Despite being government employees.  Despite not doing much for you at all the entire 40-hours you were stuck on train.  And despite having the attitude of someone who would do well as an employee of a state-run operation in Cold War-era Siberia.

• Rule #2A: Sleeping Car Attendants who expected a tip and didn't get one, because passenger was just plain ignorant, should not then belittle passenger to fellow employee, whilst passenger is standing there at two o'clock in the morning.  Such behavior generally results in stern letters being written to management and certainly no tip.

Rule #3:  Don't arrive at Newark Train Station in the dead of night.  But if you do, don't leave that train station without having some compassion for the plight of the homeless and mentally ill in this country.  I literally had to step over bodies in and around that station.  More frightening to me than the people themselves are the policies that seemingly ignore their plight.  Horrifying and disgraceful.

I apologize for the vaccuous segue, but now for the vacation itself, perhaps better described with visual aids:

This is the cafe' across the street where we dined most nights, and were usually serenaded by some kind of live reggae music or cheesy tropical-themed muzak.  

This is where I liked to go and gorge on conch fritters and virgin beverages.  Virgin mojito's don't disappoint by the way.  We were generally joined at some point in our meal by a gimp stork named Hoppy.

This was my "whip" of choice in getting around the whole entire week.  Since I now have a gimp hand, I can't ride an ordinary bicycle and nor could I balance comfortably on a tandem.  The manager at our accommodations rang around to all the local bike places and was able to locate this adult tricycle for me.  I actually received many envious compliments whilst riding it, and this particular night everyone in our party had a go riding around the parking lot, giggling like little children.

This was the beach where Beloved and I spent most of our time reclining on deck chairs and staring out to sea or up at the blue sky through the coconut palms.  Actually this beach is rather famous in that it is the set for many fashion photo shoots and it's also featured as an official screen saver.  That's my MIL in the background.  By the way I sepia-toned this photo to take the glare off my white legs. 

Every night we went to this bar to sit on the porch,  watch the sunset, drink virgin cocktails and muse on why we live in New Jersey.  I like this photo because I don't look like an extra from The Walking Dead.

This photo was taken inside our cottage.  The Florida Keys are under siege from stray cats and our holiday village is no exception.  The cats on this property are well cared for, spayed and available for adoption by guests.  Rosie the cat adopted us for the week as we were staying in HER cottage.  On the last night we relented and let her come inside, where she promptly positioned herself at my head.  We really enjoyed her company and so wanted to bring her home with us, except my naughty little dog hates any species not of his own kind.  Plus I think she's happier roaming free in her tropical paradise so we'll see her next year, same time, same place.

And last but not least, what vacation from cancer would be complete without some reminder?  This one in the liquor aisle at the local supermarket.  Because that's what I really want to do.  Drink pink breast cancer wine from a cat bottle and "support the cause".  Miaow!

*********

In summary, this was the most wonderfully relaxing and lovely time that Beloved and I could have hoped for, and was totally worth the 67-hours in train travel it took to get there. 

We need more weeks like this.

A Journey

The day has finally arrived and I'm so excited!  I am going on vacation from cancer!  Literally and figuratively.

We have an annual tradition of spending the week of Thanksgiving in Florida with Beloved's family, and we have a standing reservation at a lovely little holiday village in the Florida Keys.  Given my track record for the year so far, littered with cancelled vacations, and my seemingly perpetual state of medical instability,  I was really worried that this trip was going to go the same way as the others.  Cancelled!

But, no!  I am actually going and my bags are packed.

Okay there was a slight hiccup with the recent collapsed lung episode.  Dr Cuteness, in his adorable way, did declare a no-fly zone for my lung for at least a month.  Eegads, we really had to scramble to figure this out.  Driving was out of the question, as Beloved couldn't extend his vacation time, and quite frankly the thought of spending 24 hours driving down I-95 is about as appealing as having a surgical intervention for a collapsed lung.  Plus I have serious doubts as to Beloved's ability to pay attention for that long.  So what to do?

Well folks, I'm turning the travel clock back one hundred years or so and will be traversing the east coast all the way to Miami on the train.  For all twenty-six fun filled hours.  Actually I'm rather looking forward to it.  I managed to book the last sleeper compartment on the train so at least a third of the ride will be spent snoozing, and as for the other eighteen hours?

Quite frankly, I don't really care.  As long as it doesn't involve people in white coats, needles, rude bitches decked out in pink breast cancer awareness gear, emergency rooms, scans, medical waiting rooms, insurance forms, consents, chemotherapy, blood tests, port flushes, surgical interventions, or anything else remotely resembling the cancer "journey",  I'm happy as a pig in mud.

Amtrak Sleeping Car

And once I get there, I'm planning on eating a crap load of conch fritters.  Deep fried and delicious particularly when consumed on a warm sunny day with a view of the ocean.

Feelings of bliss and excitement for the first time in a very long time.

Adios!

I swear I could eat the whole plate!

What's your next vacation? Or staycation? What are you doing for Thanksgiving?

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