jennethink

CHEMO TALLY - 6 DOWN, 6 TO GO

And just like that, it is Friday.  It is so hard to update here when I’m feeling cruddy.  It’s hard to think, let alone write.  I’m amazed at how the chemo (last taken on Wednesday) affects my ability to focus.  I can’t – nor do I have any desire to – engage…. in anything.  Conversations are beyond laborious, television is painful, reading is an impossibility unless it is a collection of far side cartoons or a book I’ve read a dozen time prior. 

A client of mine sent me a survey he composed.  I was instructed to choose how I felt.  Here were some of my options:

I feel like gum on the bottom of my shoe.
I feel like I just smoked a pail full of garbage.
I feel like a fish that has been out of water for 11 days.
I feel like Oprah's sofa.
I feel like I just spent a solid week listening to a filibuster by Madeline Albright, James Carville and Hillary.

He’s close but what he forgot was an “all of the above” option.

However, from experience I know as badly as I feel today is only that – it is only as badly as I feel today, nothing else.  It is not an indicator of how I will feel tomorrow.  It is not a gauge of how I felt last week or a marker indicating how well I’m doing overall.  It is only how I feel.  And how I feel can change – will indeed change.  And I will be better. 

In the depth of winter, I finally learned that there was within me an invincible summer.  -Albert Camus

Here’s to the invincible summer.

IT'S LIKE A HARE KRISHNA CONVENTION IN MY HOUSE

Recently I've had a lot of really awesome visits from friends and family.  I joked often with each of them as the trips were planned, "when you get here, we can shave your head for you ... or you can do it before you come, it's up to you!"

Until now, no one has had the cojones to take us up on it.  This past weekend, my dear friend, Jeromy, walked off the plane looking like this.

You can't see my face in the picture but take it from me, I was smiling from ear to ear. 

THE AWFUL GRACE OF GOD

I loved this post.  The author of the blog, Sam, posted the essay his daughter wrote for her college applications.  It’s about taking a leap of faith.  It’s about conquering fear.  It’s about opening your heart when it is broken and shut.  It’s about so many of life’s realities and lessons that I’m astonished a 17 year old wrote it.  But I shouldn’t be.  I know the 17 year old and she’s no ordinary 17 year old.

A handful of years ago, she lost her younger brother, then 2 years old, to cancer.  Can you imagine?  Can you imagine being a little girl with life wide open in front of you watching your little brother get sick, and sicker and sicker?  Can you imagine being a big sister and feeling the sense of responsibility all older siblings feel and somehow dealing with saying goodbye to your baby brother?  Can you imagine grieving that kind of grief when you are still young enough to watch cartoons and crawl into your parent’s bed in the middle of the night because something woke you?

And if you can get your mind around that, then try this on for size.  Less than a year later, she had to do it all over again.  This time, with her mother.  This little girl who had to learn too early how to say the final goodbye kissed her mom one last time too and was plunged into the dark night all children will share – but most of us when we are adults. Cancer once again wrung her heart dry. 

I’ve been thinking a lot lately about life’s hardships.  I’ve been tinkering around with my own philosophies and turning them up and over in my mind.  I’ve been contemplating some big issues. And I’ve been asking some tough questions.
I don’t have any answers.  Not really.  But I do know a few things.

I know life isn’t supposed to be pain free.
I know we, as humans, are designed to feel pain.
I know without pain, our bodies would suffer greater injuries and deeper wounds.
In other words, I know pain has a purpose.

What Katherine’s post reminded me again was that when faced with life’s hardships, we really have two choices.
1) let the hardship define us
or
2) let the hardship refine us

There is a huge difference.  And what I’m saying is Katherine is refined.

He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God.
-Aeschylus

A CHANGE WOULD DO YOU GOOD

The other day The Hub came home with a confession.  He had read an article about Sheryl Crow and her recent battle with breast cancer.  He said to me “I’m going to say something awful because I thought it and I need to say it so I’m just saying right now it is awful and I know that.”  He said this BEFORE I knew it was about Sheryl Crow and for about 20 seconds I was sure he was going to say “your ass is really big.”  But thankfully, he went into the Sheryl story.  What he said was this:

“She didn’t even have chemo.”

I knew immediately what he meant.  The article highlighted all she’s been through.  How her family rallied around her.  How scared she was and how strong she was and how amazing she was to pull through.  That’s her story.  That’s her 10.

And here we were.  As he’s telling me this I’m looking around for a chair to sit in because I’m so weak from the chemo that the kitchen is starting to go dark.  And he’s in between doing the grocery shopping and the laundry and cleaning the house and putting The Kid to bed and finishing up some work that he couldn’t do at the office because I needed him to drive me to an appointment.  And three days ago my mom left here after cooking meals I couldn’t eat for 6 days straight, got back to Orlando after midnight and had to attend a morning meeting the next day and my sister didn’t see her husband for 14 days because she was here helping me to and from the toilet. 

So even though I said that about your 10 being your 10 and who cares if my 10 is bigger than your 10, I’m just confessing right now that sometimes it DOES seem like people who don’t really have it so bad get a lot of attention for not having it so bad.  Does that make sense?

So we talked about it for a while.  We talked about how annoying it is.  We talked about how bad we have it and how hard this is and how our uphill seems to keep going up.  Then we sat down and watched a show about a woman with a 160 pound tumor on her back and well, there’s nothing like the shows on TLC to change your perception of how bad you have it. 

Based on my 10 post, I know I'm perilously close to talking out of both sides of my mouth here which is a trick I normally leave for private times at home, but I'm thinking a few lessons are obvious here. 

1) There has to be a balance.  Yes, I want to hear about other people’s problems.  Yes, I think your problems matter.  Yes, it is significant when you go through something … even if that something isn’t nearly as big as someone else’s something.  At the same time, a little perspective please.  For every awful thing you are going through, there is someone who has it easier than you and someone who has it harder than you. 

Sheryl didn’t have to have chemo.  I do.
My chemo will rid my body of cancer and I won’t die.  Thousands upon thousands will.

You could easily say, given all her advantages and such, Sheryl has it better than me.  And you can also say I have it better than the lady I met last week who’s cancer went from her breast to her lungs and is now in her brain. 

So the next time you go through something .. anything .. any little thing that is annoying or painful or awful, tell someone.  Get it out.  Talk about it.  Think about how awful or annoying or painful it is.  Dream about how it could be better.  And then take 2 seconds to think about how it could be worse.  Better yet, think of a person who has it harder than you, think of what they are going through, think of what they woke up with and what they will go to bed with and give yourself a moment to be grateful. 

Your life is pretty grand.

Which brings me to 2) You can’t go around choosing select issues from other people’s lives and comparing them to select issues in your life.  This gives you, at best, an incomplete picture.  Just because it may seem by looking at ONE issue that so-and-so has it better than you, it doesn’t mean they do.  Sheryl Crow didn’t have to have chemo.  I may think, therefore, she had it easier than I do.  However, she DID have to have radiation- which I’ve heard can be awful.  And she DID end a long time relationship – which I know can be horrendous and gut-wrenching and she DOES have a very long face.  So all in all, I’ll stick with my life (and face) thank you very much.

I’ll never diminish your problems.  I’ll never tell you they don’t matter or they don’t hurt or they don’t count.  I stand by my philosophy that a 10 is a 10. 

But it is good to remember, in the words of Nigel Tufnel, some go to eleven.

The third and most obvious lesson is, of course, if you happen to have a tumor, maybe go ahead and get it looked at around the 5 to 10 pound mark.  Definitely by 20 or 30 because when it's tipping the scales at 160, you are just beggin' for a reality show.

I'm just sayin'

WHY, IF GIVEN THE CHOICE, WE WON'T BE SHAVING OUR HEAD NEXT WINTER

This is my current INDOOR wear.

I VOTED AND I DON'T EVEN USE SHAMPOO!

Please go here and read this post and then vote.  It's for a good cause AND you get to practice your french! (not the kissing kind, steakbellie).

Isn't it kind of cool to know that 5 minutes of your time could help build a clinic where orphans could get some of the medical attention they desperately need?

"Sometimes it takes only a few small things to bring about major change. As my sister-in-law has pointed out, achieving critical mass takes less than you think."

TALK ABOUT A HAIL MARY SHOT

I would have stayed and watched this all day.

10

I shouldn’t be telling you this now.

I can’t believe I’m telling you this what with all you are going through.

I shouldn’t complain to you .. I mean look at what YOU’RE dealing with!

For the past 2 months, I’ve been hearing a phrase like this at least once in every conversation.  I’ve heard it from friends.  I’ve heard it from family.  I’ve heard it from people attending seminars I’ve taught and just want to say a little something when I’m done.  I’ve heard it from clients, from housekeepers and from grocery store checkout attendants.  It seems everyone, once they start to let me in on their problems, feels compelled to qualify, to minimize, to dismiss what they are going through.  Because I have cancer.  And cancer is sooooooo big and awful.

This minimizing was never an issue before with my other chronic challenges.  I never once heard someone say,  “Eh, I should bother you with this, you always get in the slowest line at Target.”  Or “I shouldn’t be complaining, you have small tits.”  Before, everyone was willing to share their problems.  And I liked it!  I liked knowing what my friends and family were going through.  I liked listening.  I liked saying “totally!” and “no doubt!” and “man!” when they belched out complaints and made a list of all the reasons why, compared to them, Homeless Pete had it easy (no mortgage, fresh air, no pesky regular trips to the dentist).    I like helping people figure out what to do when their sky is falling.  I like helping solve problems, examine issues, put out infernos.  But now I'm sheltered from it.  It's hidden from me.  I'm like a horse being led from a burning barn with a blanket over my head.  Just walk this way, nothing to see, everything is fine.  That heat?  Just a weenie roast, ma’am … pay no attention.  We’re all just super. 

I know where it comes from.  People suddenly don’t feel like they have the right to complain.  They don’t feel like they should talk about their issues when gee wiz, I have cancer.  And cancer is so big, so pointy and sharp, so in your face.  People feel like their problems don't really matter, don't really count.  They are scared to complain to me. Maybe they’re afraid I’m going to shout out “oh boy you have it sooooooo bad, don’t you? … your problems are soooooo big aren’t they?  Oooooh look at me, my boss said a mean thing to me boooo hooo.  What will I do? My kid is acting up at school, soooo sad.”  Now that I think about it, it would be 50 flavors of awesome to say that every now and again.   

But it couldn’t be further from the truth.  I DO care.  I always have.  I WANT to know about your problems.  You CAN tell me if the car breaks down or if you’re scared to get on that plane or you missed your last appointment for your touch up and your roots are showing.  Because problems are problems and life is full of them.  Everybody has an annoyance scale and just because your “10” today is a fouled-up pedicure doesn’t mean it is any less important than my “10” today of yakking in the toilet.  A 10 is a 10.

See what I’m saying?  A 10 is a 10.  And what you are dealing with is no less awful or concerning just because what I’m dealing with is awful and concerning too.  So what if my 10 is bigger than your 10?  Your 10 is STILL your 10.  And I want to hear about your 10.  And your 9, 8 ,7, and 6 too.  You can keep 1-5 to yourself, however. I mean really, do you have to complain about everything?

BETWEEN THE ORDERS

Two days ago I placed a large order for my "in between the pictures" pictures with Kodak Easy Share.   Since I’ve used them in the past, I’m on their mailing list and get regular e-coupons to use.  I had one that could be used for 20% off my entire order.  With an order amounting more than $100, that’s worth using!

So I did.

But first, I had to divide my order into two orders – the reasons don’t matter but it had to do with pick up vs. shipping and it was something I was sort of forced to do in order to get my prints the way I wanted them.  Anyway, as I went to use my coupon for the 2nd half of my order I was told the coupon had already been used and could not be used again.

Bugger.

This 2nd order totaled $44.00.  Since I would rather not just give up on saving $8.80, I sent an email to the customer service team.  I have to be honest, I did not expect a response back and if I got one, I didn’t expect it to say anything other than “we are sorry but you can’t use your coupon for more than one order.”

However, this email came back to me:

Dear JENNE,

Thank you for contacting the KODAK EASYSHARE Gallery Customer Service Team.

We are unable to make any adjustments to an order after it has been placed, however, we have credited your account with [FREE PRINTS AND/OR DOLLAR CREDITS]. You can use these credits on your next order.

If you have any further questions or concerns regarding your account or the KODAK EASYSHARE Gallery service, please let us know.

Sincerely,
Kevin M.
KODAK EASYSHARE Gallery Customer Service Team

I was quite pleased.  That is until I checked my account and found the credits were for 10 free prints.  At full price, this gives me just enough money to buy a Sunday paper.   So I wrote back.

Thank you for getting back to me so quickly.  I was pleasantly surprised you did and you made an attempt to compensate me. 

However, I have to say I’m a bit disappointed in the attempted resolution.  I placed 2 large orders with you yesterday.  The first I was able to use my coupon, the second I was not.  The value, had I been able to use my coupon, would have been 20% of my second order or about $8.50.  You credited my account with 10 free prints.  At full price that equals a whopping $1.50.

I certainly understand you cannot apply a coupon retroactively so will you please credit my account an amount equal to the amount I would have saved had I been able to use my coupon?  I would like to continue using Kodak for my prints and projects.

I do appreciate your attention to this!

2 hours later, I got this:

Dear Jenne,

Thank you for contacting the KODAK EASYSHARE Gallery Customer Service Team.

We are crediting your account with a one time credit of $3.18 credit good towards prints, shipping and photo gifts (expires December 12, 2006). You will be able to use these credits on your next order.

If you have any further questions or concerns regarding your account or the KODAK EASYSHARE Gallery service, please let us know.

Sincerely,
James P.

They are prompt.  But man are they a bunch of tightwads.  Do you think that $3.18 is coming out of James P's paycheck?  Can he afford it?  How did they come up with that number?  That very small number?  Why $3.18?  Perhaps James P. is not authorized to credit any more than that.  That's his limit.  $3.18.  Not only that, but they took away my free 10 prints.  That'll teach me to complain!

This is a lost opportunity on their part.  They could have had a customer for life. 

I think I’ll check out snapfish.

WHY ME? VS. WHY NOT ME?

The angry woman was back today getting more chemo.  Not me … contrary to what you might think, I’m not the angry woman.  Another woman.  A woman who is on a similar chemo schedule to mine.  She was there 14 days ago when I was.  She was there today.  14 days ago was her first cycle.  She had a lot to be angry about , I guess. 

You can pick out the newbies.  I can see them coming a mile away. Actually I can only see them coming 10 feet away but the newbies are noticeable!  Now I know why everyone asked me during my first treatment, “first treatment?” because it is so obvious.   Last time she was all anxious.  You could feel it coming off of her.  And it wasn’t really about the chemo, it was about the fact that her appointment was at 11:00 and here it was noon and she was just getting started and there were people in the waiting room that came in AFTER her and they started treatment BEFORE her and is this what it is always like and she wants to know what she can count on and maybe they didn’t know she was here and so what if that doctor schedules differently and why wasn’t her medicine ready and on and on and on.

She asked the nurse what took so long, asked the lady on her right if she’d been there long, asked me how long it takes me.  She told her nurse the needle was uncomfortable and the pump she has to wear was hard to sleep with and she told me the ativan didn’t help (which I have a HARD time believing. Some of you know what I’m saying).  She told her husband he was sitting too close and the lady across the room not to bother, the ice machine didn’t work.  She told and talked and asked and wondered. 

Since I was right next to her, I got the majority of it.  Eventually I just listened, as I could tell there was no end in sight.  She was somewhere else.  We non-newbies couldn’t get to her.  She didn’t want anything from us.  We couldn’t help her.  She has CANCER you see.  CANCER … don’t you get it?  It is very unfair and she is very angry. 

After telling me again how long she had to wait and how long it was all taking and after having me smile and not respond again she said, “Well, I guess I’m just going to have to get used to it."  and was quiet enough for a response.  So I tired.  “No,” I said “you don't have to .... but it sure would be easier on you if you did." 

It went right by her.  After I was done with my treatment (and here she was just getting started!) I gathered up my things and patted her on her shoulder.  I smiled as warmly as I could and made another go at it. "You're going to be here a while." I said.  And she mistook my comment for a question said "yeah for at least a couple more hours."

I smiled (again) and said (again)  "you're going to be here a while."  And she said nothing but finally saw me for the first time and I said "and it's okay to be here a while."  And I left.

She was back today.  She’s still there.  She’s going to be there longer than I thought.  She’s still angry.  She’s still asking why and when and what.  Her pump is still too loud and her appointment is still too long.  Last time I was more patient with her.  Today I wanted to shake her.  Not because I don’t understand and not because I don’t feel for her.  But because she’s missing it.  It is slipping by and she’s missing it. 

There are the most beautiful people in the world sitting in that chemo room.  They are sick and in some cases dying and they are so completely vulnerable.  They pull the neck of their shirts open so nurses can plunge needles into their chests and they do so smiling.  They sit quietly and turn their heads as others yank open their tops to have the same thing done … just so you can have the illusion of privacy.  They pat.  They do a lot of patting.  They pat knees and shoulders and toes as they walk by dragging their IV lines with them.  They talk to each other in hushed tones because that man in the corner is sleeping.  They share stories and they laugh.  They ask their caretaker who came with them if they wouldn’t mind getting them a pop from the machine and they do it like they are asking for a million dollars and they are so grateful for a penny.  They usher the newbies along and say “get a blanket from over there” and “tell her if you need something” and “do you want this paper? I’m done with it.”  Everything in that room is very real.  It is very raw.  It is right in your face.

“What’s your diagnosis?”
“Hodgkin’s, yours?”
“Breast. 2nd time.”
(pause)
“That’s tough.”
“Yes.” (pause) “I like your head.  It looks great.”
“Thank you.  I like your head too.”
“Do you?  Thank you.”

I don’t know.  Maybe it isn’t something you can see there in type.  I don’t know if I can communicate with you how meaningful that room is.  I don’t know if I can properly get across the tone each of us uses when we say goodbye.  It’s different.  It’s different than the other goodbyes in my life … we don’t say “see you later” or “so long” we actually said “goodbye” and we look each other in the eyes when we say it.  We look at each other.  In the eyes.  And we say, “Goodbye.”

And every time we do that I feel washed clean.  There is no bullshit in that room.  That is real life.  We say things directly.  We ask for what we want.  We say goodbye because we don’t know if we’ll ever see each other again.  What happens outside of those doors doesn’t count, doesn’t matter, not for the few hours you are there.  You are there.  You are in battle. And it is beautiful.

And she’s missing it.