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

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