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.

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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

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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!