Tag Archives: Explain Cancer To Kids

Things I Love, And I Don’t Know Why #1

I love using something all the way to the very very end.

You know, squeezing that last little ooze of toothpaste.  Or putting a bit of shower water into the bottle of shampoo to make sure you’re getting the last bits out.  Plucking the last piece of wood from the pile.  Staying on my computer until the screen turns black, and there’s an almost audible sigh from the machine, as if it has done all it can do that day to help me.

I actually look forward to getting to that point in time when something is finished.  Not done, but finished.  Remember that over-enthusiastic, sing-songy “All Gone!” that we did with our young kids?  I thought it would make the idea of something great being finished more tolerable, because there was music involved.  I did it, let’s be honest, so my son would be distracted and not cry.  It worked often.

Like when the cookie was eaten, or the toy was returned to its rightful owner, or the last swirls of warm bath water had sashayed down the drain.  We would look up at me with that “say it isn’t so” raised eyebrow and quivering lip.  It even worked when the barber in town shaved my head because chemo had taken my hair follicles hostage.  My barber, kind old gentleman he, had turned the chair to face away from the mirror, and toward my son and husband.

I watched them watch me.  First, a metallic “click” and immediate hummmmm of the clippers, and without a pause, the barber paved a no-turning-back-now one-lane road down the center of my head, and kept widening it with every pass.  He had a deliberate and seasoned stroke, moving across the top of my scalp.  I appreciated how he didn’t waver in his job.  A waterfall of hair fell onto my shoulders and cascaded into my lap.  The essence of my femininity was clumped disgracefully all over my lap.

The whole procedure took less than five minutes and cost $8.  I walked straight to Anders and Hans without looking in the mirror.

“Where’s Mommy’s hair?” I asked Hans, and I bent my head down right in front of him.  His warm little fingers rubbed over my stubble and he giggled, thankfully.  “All gone!” I said as lightheartedly as I could at that moment.

Some women actually consider not doing chemo because they can’t imagine life without hair.  I can’t imagine life without life, so there you go.

So perhaps it makes total sense that I like to squeeze the tube until nothing else comes out.  Because that means, really, that you’re about to get a brand-spanking fat new tube.

And I love that, too.

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The Road to “Yes!”

The train tracks from Alaska into Canada.

I am lucky enough to now be blogging for Facing Cancer Canada, which gives me an outlet to talk very much to the cancer community.  “It won’t always be about cancer,” I told Chantal, my contact there.  “My life is not all about cancer.”  She understood, and actually encouraged me to simply write what moves me, as they want to show all sides of the cancer experience.   In it, after it, through it.

This is my second blog post.

We’re a posse that understands the meaningfulness of firsts.   First time in the infusion lab.  First tug and eerie release of your here-to-fore sturdy hair.  First time hearing the solid “thunk” of the door closing as everyone flees the radiation room, yet you are left behind.

So many firsts.  So many difficult firsts.

But life has a way of evening things out.  The pendulum swings back.  The trick, it seems, is to catch it and go for a new ride.  Take a chance.  Try something new.

I am now on the side of more pleasant firsts, thankfully.  Like this past weekend, I was part of a gala event called Truth Be Told for the Premiere Oncology Foundation in Santa Monica, California.   I was invited as a storyteller, along with 10 other cancer survivors, to put a face on this disease.

I grabbed, and I swung.  I mean, I’m not a professional speaker.  I like speaking.  Do it a lot, actually, every day.  But not on stage.  And certainly not alone, without notes or a podium.  Terrifying?  You bet.   But so amazingly juicy to force myself to push through my comfort zone.

Not only did I get to simmer for 2 days with some soulful people, but I got to share my work with the audience, and ask them to consider the importance of including our kids in our cancer treatment.  In other words, saying yes to opening myself up to strangers allowed me to further a discussion that I am passionate about.

Life is just a series of firsts, punctuated by long stretches of the same old, same old.  For cancer patients, saying yes is part of the treatment.   We have to agree to some protocol and move forward.  But having an enthusiastic “Sure!” to what comes after we’re all finished with our doctor visits, that is part of the wisdom borne of a cancer diagnosis.

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The Jagged Path

                                     At 30,000 feet, coming home from St. Louis

You’ve heard the phrase:  going from Point A to Point B.   For humans, the path of choice is always a straight line.  It’s the quickest, after all.  The most efficient.  It expends the least energy, and allows you to move on to the “next thing” on your list.

Right.  The excruciating reality of life is that the straight line between Point A and Point B only happens in geometry homework and highways in Nevada and the Nullarbor Plain in Australia (one stretch of road has no curves for 87 miles).   And so the desire of doing something quickly and effectively is clobbered by the cold hard fact that life doesn’t work that way.

I mean this literally.  The act of life, whether it is manifested in a tree or a river, does not do straight lines.  Life is organic.  It meanders.

I heard a woman the other day say something that really stood out to me.  She said that we can’t force our business into a mold.  Because the marketplace will know we are trying on someone else’s clothes.  That we need to find our own voice, and make our own way in an organic fashion.   True success, she repeated, is organic.

Writing this post is another step in fully believing and processing this fact.  It comes on the heels of having a conversation with the man responsible for starting Camp Okizu, Dr. Mike Amylon.  He is a family friend, and I’ve had many conversations with him over the course of 20 years.  Mike, with the prestige of his position at Packard Children’s Hospital at Stanford as a pediatric hem/onc, wanted to start a summer camp for families who were dealing with childhood cancer.  Maybe the child with cancer.  Maybe the sibling.  Maybe the whole family.

What he thought would be an easy sell to the oncology community turned out to be harder than he could ever imagine.  You see, many offices didn’t want to even have Okizu brochures in their waiting rooms, because then they would have to talk to patients about the tricky and poignant issues that arise from a cancer diagnosis in the family.   And precious few oncologists knew what to say on this topic at the time.

His idea, bubbling up organically from the work he did, was new.  He was forging his own path.  And he, like every other entrepreneur with an idea, had to hack his way through the deep brush to get there.

Today, 30 years later, Okizu stands ready to welcome yet another summer filled with humans trying to wend their way from Point A to Point B and have some fun while doing it.

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The Giving Spirit

This is a story of a woman taking things into her own hands.  I like women like this.  I particular like this woman, because what she took into her own hands was my book.  And specifically, getting my book into other people’s hands.

I want to share this story for a few reasons.  Because this woman is so cool, and she deserves the props.  But more importantly, I’m sharing this because I hear every day from people who say they love the book … wait for it … but they have no funding.

I had such a conversation not very long ago with Sharon Leslie, a onco physical therapist from the Bay Area.   She had found out about my book when a girlfriend she works with showed her the copy I had dropped off.  Sharon listens to women “constantly” talking about their anguish over their treatment and their children.  So she did something to bring together the women in need with the book she thought got it so right.

Here is what she did.

  1. Sharon hosted a party at her home one night.  You know, a couple bottles of wine, some very nice nibbles and sweet things.  (She even invited me over for dinner beforehand, so I got to meet her whole family!)
  2. She invited to this party her girlfriend Liz who sells Silpada jewelry (www.silpada.com), which is just like www.stellaanddot.com.
  3. She asked if that girlfriend would donate 25% of her receipts from that night to buying my book.  The jewelry saleswoman was delighted to do that.  After all, she was going to sell a bunch of jewelry that night, and who wouldn’t want to help support other women going through a tough time.
  4. She then invited about 100+ girlfriends to the party (about 50 did come).    A night out.  Shopping for themselves.  Or for gifts for birthdays or holidays.  And knowing that their shopping is going to help support other women.
  5. She also put out a basket for straight donations, if people just wanted to support the idea of giving money to purchase books.

I went to the party that night, because it was in Los Altos, about an hour away from my house.  I signed 14 books that night for different guests who wanted to give them to personal friends.   Combining the $1,285 from the “straight donation” basket, and the 25% of jewelry sales resulted in 181 MORE books.    Sharon now gets the pleasure of handing out my book to anyone she thinks could use it.  No strings attached.

It’s such a fantastic idea and a 5-way win that I just had to share it.  May it inspire more such events!

Win:  for the books.  They get to work.

Win:  for Sharon because she gets to hand out a book to someone in need RIGHT THEN AND THERE when the need arises.

Win: for the Liz, because she gets to sell her goods and feel really good about donating some of that windfall to a great cause.

Win: for the friends shopping, because not only do they get the chance to go shopping in a unique way, but a portion of their purchase goes to help other women.  That they’ve never met.  But could be just like them.

And finally a big ‘ol win:  for the women with cancer.  Because there is nothing so wonderful as an unanticipated gift that will help you deal with something so very important and difficult.

So three cheers for Sharon Leslie, who took life into her own hands and has made a huge difference in the lives of close to 200 women and their families.

 

 

 

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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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Just Ask

To ask.

Why is this so hard?

Kids know how to do it.  In fact, they can repeatedly pull the “Can I …” trigger until you would image they get some kind of elbow injury.

Having been on the receiving end of the “Can I?” game, I’ve watched  how a pro does it.  The initial approach is straightforward.

He asks.  Pure and simple.  In our house, often the pro gets a reply that he doesn’t like.

So, after a minute or so, he asks again.  To his horror, he gets the same unappealing answer.

Perhaps next it is a re-framed question.  Something a bit different.  “Can I do it later?  Can I do it tomorrow?”

If he still does not receive the right answer, he adds some flair:  The add-on.

“Can I do it IF I …”  This is a savvy move, for the qualifier makes the recipient believe they are negotiating.  This is smart.  It also serves to elongate the conversation.   Fatigue sets in.

This is the time for the extreme level of difficulty.   Time to unveil the ever-so-slightly desperate switcheroo.  The “Why can’t I …” refrain.  Only the best can keep a level head and dry eye at this level.   Whining doesn’t score extra points, and actually allows the recipient to know they might have the upper hand.

Today I tried the “Can I” game for myself.  I’m not a big player.  Not too comfortable with it.  But now, I wonder why I don’t play this game more often.

Because, you know, I’m finding that most people are pretty accommodating.

So today when I asked, “Can I get you to move my book from the childrens book section of your store to right there across from the cash register where far more people will see my book?” the lady on the other end of the phone said, “Sure.”

Clearly she didn’t know the game.

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Walking the Line

Was he sleepy?  Or did he just shoot up?

And why oh why did I stay in his cab?

I don’t know.  I don’t know the answer to any of those things, and it bugs me.

We were all in a great mood, having just experienced the Blue Man Group in Chicago.  And it wasn’t all that late, maybe midnight, when we hailed the cabbie.   I got the back middle seat, with my two guys on either side of me.  My seat allowed me the prime (and only) position of having a view of the eyes of the cabbie.  It wasn’t like I was focused on him at first.  We were talking about the show, the uses of yards of toilet paper and how many marshmallows a human being can actually fit in his mouth (it’s a lot more than you think …), when our man behind the wheel kind of lurched his car down the road.  It got my attention, but I brushed it off and went back to our conversation.  But then he sort of sagged into another lane, and then he really got my attention when he closed his eyes and stopped the car at a green light.  On a pretty busy street.

Sort of out of character for me, I reached through the open plexi between the front and back seat, touched his shoulder, and asked if he was alright.  He perked up, mumbled something, and then both Anders and Hans were looking at me like I was a lunatic.   They couldn’t understand why I had shook the guy.   I thought perhaps he was dying, actually.  And since he was the one at the controls of the car, it seemed a prudent move at the time.

And anyway, hadn’t they noticed how he was driving?  Couldn’t they see his eyes kept closing?

Apparently not.  Because it kept happening.

And instead of saying to them, “Holy crap, our driver keeps closing his eyes. I think we need to get the hell out of here!”, I gave Anders one of those googly-eyes that says, “Holy crap, something is very very wrong here!” but didn’t tell him what.

Because I thought it would embarrass the driver.

I mean, what is WRONG with me?  Either he had just shot up with heroin in the moments before we got in his cab, and probably wouldn’t have given a flying fart what we thought of him, or he was working on his 19th hour of constant cab driving to try to pay for his ailing mother’s new hearing aid, and should have been appreciative of someone calling him out.

So there we were, weaving our way ever closer to our hotel, completely at the mercy of some dude clearly not completely with it.  I was praying hard, “please please please let him stay in our lane please please please.”

It was a long few minutes, I’m telling you.   And instead of engaging him at the hotel, I walked away with Hans as fast as I could as Anders paid the bill.

Was I wrong?

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