Tag Archives: cancer

Words I Love: #6

Lamprocapnos spectabilis, known as the Bleeding Heart flower

I don’t really fancy labels.  I’m not speaking of the paper kind, but of the kind we affix to each other.  I don’t much like them because they have a tendency to be overly general.  Yes, we can be crazy one day, but then so grounded the next. Conservative when it comes to running around naked, but liberal when it comes to eating chocolate.  Labels are often so sweeping, they ruthlessly gather up people who might not really deserve them.  And then they keep us from really understanding each other.

Let’s consider the label cancer “survivor.”  What bugs me is the implied message that those who don’t get the label, those who have succumbed to the disease, didn’t triumph. Perhaps didn’t try hard enough.  There’s also something in there for me about a race that never ends, which happens to be true but I don’t really want to be reminded of it, thanks.

Cancer “thriver” is also now bandied about.  (And how is that for a great word?  Bandied.  So light and flirty and easy to pass around, which happens to be what it means.)  Thriver is better, because it doesn’t have any of the end-game feeling about it, but it seems weird to be affixing the concept of thriving next to a word that is so ugly and sapping.

So because as of late I’m being asked to provide short, pithy titles for myself, I’d like to share what label I will be using.

Aficionado.  Oooh, so foreign sounding.  And flamboyant.  Lots of great vowels involved.  It’s also close to impossible to spell correctly the first time, which makes it feel a skosh more important.  I am knowledgeable (another component of being an aficionado) about breast cancer.  Usually an aficionado is also enthusiastic.  While I’m not enthusiastic about having had breast cancer, or that breast cancer exists in the world, I am enthusiastic about my involvement with the cancer community and how my work is helping others.

Over and out.

Sue Glader. Breast cancer aficionado.

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C4YW Final Thoughts

This blog appeared on the Living Beyond Breast Cancer site today.

 

As with most things, the anxiety around something new never quite plays out and the unexpected benefits delight.  Such was my experience at C4YW this year in Orlando.  Unequivocally, it was a great conference for me to attend.

Why?

These young women were brave.  Honest.  Open.   Grateful.  Healing.  I met women smack in the middle of treatment, who had climbed aboard a plane to come to Orlando, because this conference was that important to them.  They wanted to be surrounded by other young women who understood, and learn about issues that affect them specifically.

They let me into their lives, these women, sharing their stories, the names of their children (sometimes with halting voices and tears), and their worries.  As someone just starting out selling my book, this was as real as it gets.

I was able to press 45 books into the hands of women with children at home, nurses who treat those women, and representatives of cancer support groups and national (and international) organizations who make it their business and passion to help these women.

Being an exhibitor on your own is a vigorous experience. For a total of 19 hours over 3 days, I stood up and talked to those who came by and expressed interest in my book. Gravity takes hold, and my toes, after being embraced by stylish yet slightly unforgiving footwear, swelled like ballpark franks. The second morning, instead of manning my table at an unforgivable 7:30 am until 6 pm (that’s 4:30 am for us west coast bodies!), I opted instead to get some fresh air and a run outside and slide in at 9 am.

I had hoped to go see a few of the speakers. But I learned that an exhibitor is not necessarily a participant, unless you sign up to be a participant.  Now I know.   And second, the exhibit hall, open during almost all the hours of the conference, never really quieted down.  When most participants were in sessions, there were always a few others wandering in there, and that was also the best time to talk with other exhibitors.  As business is about making contacts, this was a priceless opportunity to either meet face-to-face some of the people I’ve been emailing or talking to on the phone, or introduce myself to new organizations.  When things got slow, I introduced myself, handed over a book, and encouraged them to read my work at their leisure.

I was struck by how many of us there on the exhibit side had a cancer diagnosis behind us.  To wit:  Josh at Lymphedivas, whose sister started the company because she couldn’t stand the ugly compression sleeves offered to her.  Danielle and Angelle started Chemo Beanies because these two sisters couldn’t find something stylish and comfortable to wear when they lost their hair. Susan from the BeauBeau started a company to offer fashionable turbans to women with medical hair loss.  Although she came from  a family of women diagnosed with breast cancer, a diagnosis of Alopecia Areata motivated her. Countless non-profit organizations have been started to offer support and advice, from KC at Families Who Support Breast Cancer Survivors to Sarah at Project3One to a metastatic disease group represented by a mom and her young daughter.  Next door to me  Susan mixed personal experience with love and tenderness as she fitted women with a very beautiful (and sexy) double-arm compression garment she found manufactured in Italy.  When I introduced myself to the three ladies at the Anita booth behind me, helping fit beautiful bras and swimsuits for women who have had a mastectomy surgery, I learned that Twila was a 19-year survivor, Merri was closing in on 10 years, and Colleen, diagnosed more recently, was 7 months out.

If any participant wanted to see “life after cancer” in full, glorious view, she had to look no further than the exhibit hall and at the other participants. It pains me that there are so many young women who need a breast cancer related conference, but  there is comfort in  knowing that by offering targeted programming in a supportive environment, people will gratefully gather to see that they are not alone.

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Being Bald

Boy, if I didn’t already know that you don’t get what you don’t ask for, I certainly have been learning that in spades lately.

Having come from a family of “Oh, I don’t want to be a bother” and “You don’t have to if you don’t really want to,” it’s taken some getting used to this idea of promoting oneself.  Like it doesn’t come naturally.  At all.

I have to be reminded by my pr savvy girlfriends that I’m trying to do good work, and part of how I can help others is by shouting from the tallest branch with the most authentic message.  And shouting a lot.  Or maybe whistling.  Or making a video that rocks the shizzocks.

So there I was at the Zero Breast Cancer Dipsea Hike event the other Sunday, having been convinced by my one girlfriend to set up a table and at least hike the course.  So I did what I was told.  I set up my little card table, put out copies of my book, and stood behind it with my cup of coffee in my hands and a big smile on my face.  I sold 2, count ’em, 2 copies that day.  One to a teacher of young kids from Tahoe and another to a nice woman who kept tearing up when she looked at the pictures.

Not exactly a spike in sales.  But I have heard of such things, from other authors, who have talked of book signings where nobody shows up.   (Ouch!)

So I’m standing there post hike, and I notice that there is a woman who looks familiar not because she is a friend of a friend, but because I know she is on television.  Somewhere.  I know it.  And as I try to watch her without staring, her name pops into my head:  Gayle King.  That’s it, it’s Gayle King.  I know she is a television news reporter from San Francisco.   In that moment, my PR mavens jump on my shoulder and start whispering into my ear.

“Go talk to her, Sue”

“Give her a copy of your book.”

“It’s perfect.  This is a breast cancer event and you have a breast cancer book.”

I watch as she winds down from the run, as she peruses a table of free swag from another vendor, and as she goes and gets food to eat.  I try to do the mind meld where I ask her mentally to come over to my table, but that doesn’t work.  I even mention to my friends next to me, “Hey, that’s Gayle King, and she’s on tv.  Should I go and tell her about my book?”    They of course encourage this action on my part.

So, what the hell, I think.  And I grab a book, a business card, my proverbial nuts, and stride over to Gayle who is sitting in a chair flanked by some friends.

I don’t lead with “Hi, my name is Sue, ” or “Excuse me, I have something I’d like to share with you.”  I lead with “Is your name Gayle?”, which it turns out, is NOT her name.  She doesn’t offer her name, which is absolutely her right but leaves me with this terribly horrid feeling that I must have either a) thought she was someone famous and she isn’t or b) that she IS that famous person but she would rather not talk to some half-sweaty stranger obviously interested in showing her something.   The Not-Gayle woman tells me that if I’m looking for someone named Gayle, the women at the finishing table might be able to tell me whether she has come in from the hike yet.   And so I thank her for that information, and in another awkward moment decide on my next move.

“Well, I’m here, and you’re obviously moved in some way to support breast cancer awareness because you’re here, so let me show you what I’ve done.”

Thus ensued the pulling out of the book, which one of her friends asked to see and started to read with a couple of the other women.  Not-Gayle said that this is an important issue, and clearly a pretty book, and I said something about how I thought she was on television and that’s why I came to share it with her.  And that’s when she said,

“I am on television.”

And then I wanted to vomit.  Because that’s when she told me her name is Dana King, and I looked at her and her friends and smiled and realized in that split second that Gayle King is Oprah’s friend and not the Emmy-winning anchor of the CBS news affiliate in San Francisco that I was currently talking to.

So.  It blows when you make a fool of yourself.  But here’s the thing.  Dana ended up telling me that she would take the book and give it to one of the medical reporters at KPIX to check out, because “it’s breast cancer awareness month in October” and everyone is looking for an angle.  And indeed Dr. Kim Mulvihill called me a week later to ask if she could come and interview me, which she is doing next week.  When I told her about how I’d majorly blown Dana’s name, she said that Dana hadn’t mentioned that, and that she in fact had said that I was quite nice, which, Kim pointed out, is not always the way that famous people are approached at events.

So note to self.  Don’t think you know someone’s name.  Offer yours and go from there.  And sometimes being bald has nothing to do with how much hair you have on your head.  That Sunday, I was totally bald and just cloaked in my embarrassment.

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Free to Be, You and Me

Tonight was a game changer.  I sat in a room of strangers (except for Nancy) and told them my story.  Then I handed everyone a book, and we read it together.   I’m honestly too fried right now to write coherently or compellingly, but I just have to say that it was very moving for me, and it seems for everyone else as well.  On one side of me a 6-year survivor of stage 4 ovarian cancer, on the other a woman 3 months out of surgery and bald and beautiful.   A pre-school teacher was so effusive in her compliments that she almost made me cry.  I sold a handful of books, touched a number of people, and realized that tonight just might be the first night of a whole new career.  At dinner afterwards (Chinese, obviously), Hans overheard the music playing in the restaurant.  It was as perfect as my fortune.

“And you and me are free to be, you and me.”

To charting one’s own course.

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Ode to Joy

It’s hard not to be sidelined with the mounting signs.

I recently meet with someone in the cancer field, and as we talked about my 10-year-old diagnosis and how I’m feeling (which is great), she used the word “hopefully” when discussing how I’m “cured of cancer.”

I am in the midst of helping my mother create a family trust, and discussing things like “being incapacitated” at best and dead at worst.

I receive a heart-wrenching Facebook notice from a husband who is telling his friends that his wife, who is my age and has a son who is Hans age, is not responding to her treatment for her second round of breast cancer, and has been given less than an appealing outcome for her future.    He speaks of months.

The card catalog of experiences that make up my life tell me that she is not me.  That my mother is simply being prudent and smart about organizing her end of life, so that what my father worked so hard to make and she worked so hard to keep stays in the family, instead of going directly to the government.  That people get uncomfortable when taking about the future, and for whatever reason cannot help themselves but to qualify things with words that (perhaps unintentionally) deflate and terrorize.

So here in this moment, when I am starting to spin, I will write instead of words that will buoy.  Inflate.  Caress.  Boost.

My vision is that my lovely strong amazing mother will live her life as she has up to this point, riding her stationery bicycle and tending to her home, cheerfully showing up at my doorstep at any time of the day or night, until the day her heart decides to stop pumping and she slips like a red-hued leaf in autumn from the end of its branch and falls effortlessly, calmly, and dreamily to the ground.

That I will live out my life in the strong embrace of my family, in a long and varied swirling, twirling, exciting melange of people and smells and sights.

That Verna will shrug off what is currently consuming her body, like a snake slipping from its old skin, and emerge with health and vitality, knowing that what people tell you about your body and your life is an external discussion about an internal situation.

Because life – this life, our life, how life comes into being and changes over time – is a mystery.  No one knows what the future will bring.  And that, perhaps, is a gift of sorts.  We can guess all we want at what the future will bring, but is it not true that many times we stand surprised at what actually occurs.  That we never saw it coming, but it came all the same.

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Signs From Above

Sometimes things just line up perfectly.

I was walking up an unending hill yesterday, talking to myself about the plans for my future (actually interviewing myself about my kids book).  It felt good to be somewhere very very green, as Bequia was so very brown and dry.  Roxy, my dog, was happy to be out, and although I had made one “hail mary” call to a local girlfriend to join me last minute, I actually was appreciative of the solitude.

Of course, if anyone could see me, I looked like a lunatic talking to myself.

So there I was, huffing and puffing up the hill, all the way to the top, where I get a great view of my town and beyond.  Beautiful.  Satisfying.  I had said all the things I wanted to say to myself.  But it wasn’t until I turned around, started back down, and rounded a corner that I was met, full face on with the most glorious CLOSE and PERFECT end-to-end rainbow I think I’ve ever seen.

It was a big ‘ol cosmic HELL YA SISTER!   KEEP ON TRUCKIN’.

At least, that’s how I interpreted it.

And I even laughed out loud.  Because it was that perfect.  And I stayed there looking at this thing of beauty even after it started to rain, pretty hard on me.  Because, you know, when the cosmos is talking, you can’t start walking.

Sunshine and rain, that’s all we need.

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