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Friday, March 15, 2013

Anger

Do you remember those toys you had as a kid, those Clown Blow-Up Punching Bags?  We called them "boppers" and in my circle, every kid had one.  They were as tall as your five year old self and were good for releasing aggression.   You'd fill the bottom with sand, blow it up and then punch the heck out of it.  No matter how hard you punched, the smiling clown would always pop right back up, happy to take more of your abuse.

After time and lots of punches, the doll would start to sag.  It'd take your punch and then lie on the floor for a second, gasping, before slowing rising for the next punch.  It's white plastic skin would start to get a little wrinkled, and your fist would sink deeper into his belly.  Eventually, the air would escape and the punching bag would be just a heap of useless plastic puddled on the floor, defeated forever.

I know how that clown feels.  This latest round of Gemzar left me pooled on the floor, whimpering, "I give up."

Immediately after infusion last week, I came home, went to bed and stayed in bed until Sunday.   No steroid energy. Just pain, nausea, vomiting, weakness and illness.    Chemo came at me in a fury, like a 500 pound Sumo wrestler intent on giving me the beat-down of my life, and after my most recent and past beat-downs, I just am not able to pop up the way I used to.  After seven chemos, the air is going out of me, my skin wrinkling.  My times lying on the floor, gasping, are getting longer.

Sometime last week, lying in my drug-sweat stinked sheets, teeth unbrushed with vomit crusting on them, watching my stomach and legs shrivel with weight loss, unable to eat, drink, pee, walk - hot flashes alternating between shivers, a migraine along with pain from shoulder to liver to hips and legs, too sick and weak to pick up my head to even look at a book, a TV show, too weak to even turn over, I had my first moments of fury at this disease. I could not move, how could I have energy for this ire?  Yet, internally, deeply,  I was raging was how it was to be for me, and worse, for my family.

This was new.  I have never thought, "why me?"  I am a "why not me?" person.   Bad things happen to good people and there is no rhyme or reason to the chaos life brings.  So, through all of these years, I was accepting.  I got cancer, it sucks for me;  I would handle it.  My job now was to prepare my family as best I could.

But Goddammit!!  My body should be strong: I should be working, planning college visits with my son, looking forward to family events, worried about my wrinkles or widening waistline. I am too young for this, have worked my whole life, and now should be planning for vacations I dreamed of, time alone with my husband instead of planning my funeral.   Why is it that I am in a wretched body, on a good day watching TV in my iPad in bed, on a bad day writhing in agony between drug-induced sleep? This parasite is killing me off, and it has to do it in these incremental doses, making me weaker with a longer recovery time each bout of illness, my children scared at my bedside, my husband having to do everything.  It can't just take me, it has to torture me first - and my beloved family.

I was furious.

Anger, Kubler-Ross said in her book "On Death and Dying" is one of the five stages of grief, along with bargaining, denial, depression, acceptance.  That seemed too simple to me.  For my part,  I went straight to acceptance.   For me there is nobody to be angry at, or bargain with, at least as far as getting cancer is concerned.  I don't believe in a deity who hands disease out like a dealer handing out blackjack hands.  "Lucky you, you get blackjack."  "Sorry, you lose, I'm taking all your cards."  It just made no sense to me,  I can't be angry at that.  Tragedy happens daily: tsunamis, car wrecks, disease - why not to me?

That's not to say I've never been angry.  There is righteous anger I have felt at the way a few people in my life have treated me during the course of this disease; but they have a choice and control over what they do  It's not a fluke.  They deserve my disdain, their behavior is deliberate.

I also have anger that so many undeserving in this world are given what I have been denied, like those who waste their lives in addictions.  I see them, trading all of life's beauty for the next high.  I can't help but feel I deserve what they have thrown away, and I should have the right to pull the life force right out of them and put it into me.

That kind of anger feels reasonable and justifiable. It is directed at a specific target for a specific reason, and it is easy to push away.  People make their choices, both good and bad, and you can't do anything about it.  Sometimes, if you try, you can even find compassion for people who have lost their way.

This outrage I felt while so sick was different.  It was animalistic.  Undirected and wild. A coyote in a trap will bite.  It's pain and helpless frustration and fury that this was happening to me. When you are that down, when your body takes blow after blow after blow after physical blow, it seems anger - no, rage -  does come welling up without reason.   Somewhere inside your vomiting, ache-filled body and pounding head, it is there.  Pure anger, at just being sick.  Why me?  Why?

But I have choice and control too.  I have taught myself to focus on the tremendous good that has come with this disease, and be accepting over what I can't do anything about.  To steal from the 12 Steppers:  I am powerless, so all I can do is take it one day at a time.  Nobody is promised forever.  Nobody is promised not to suffer.   Acceptance is also part of the deal.

So again - for now  - I recover.  I once again, oh so slowly,  rise out of the battering.   On Saturday, my husband helped me to the bath and changed the sheets.  I brushed my teeth, put on new clothes, and came out fresh, clean and with my anger dissipated.  Back in bed, I saw a squirrel play on a tree outside my window, and smiled when my dog jumped in my bed and pawed me, twice, to try to get me out.  She had thought I'd be out for good, seeing me in the bath, and she was angry too.  Enough of me lying in bed, come play!

Gratefulness and acceptance returned.  I had a sunny day, clean sheets, no more sick layered on me.  The nausea and pain had mostly passed and while I was as weak as a human could be, taking my first shaky baby steps again,  unable to even stand and pour some coffee,  I could start to try to eat and gain strength.  I am luckier than some:  I had help,  I had people checking up on me.  I had a little cat who didn't care if I was angry or sick, who just just wanted to curl up next to my head.

I saw the doctor this week and told him how sick I'd been, and for the foreseeable future, I will be giving up on chemo.  We will try TDM1 as soon as they get it in their clinic, and in the meantime, I'll have yet another CT to see what is going on inside.   Nothing pretty, is my guess.  I think cancer may be invading vital structures, causing these illnesses.  I hope I'm wrong.

I'll try to survive for a little more, because that is what we humans do.  We get punched, we get knocked down, we get mad, and we get up again.  Over and over, until the air is gone.

Luckily, there's still some air in me.

.

Monday, March 4, 2013

A Day in the Life

One of my dreams in life was to wear a sassy pair of red-bottomed Louboutin shoes.

I pictured myself the most fashionable school secretary in the country, flipping down the hallways, a blaze of red showing with each step. Off to the library I'd go, skirt swishing, heels clacking, bottoms flashing.... my shoes costing two weeks of my salary but no matter, the librarian is impressed.

Then cancer slammed me like Hurricane Irene. And, chemo left my bones in wreckage like those shoreside homes you saw on the news, pilings every which way.  I became metastatic, and knew my dreams, both large and small, were coming to an end.  During this time when I might finally decide to splurge on a pair of extremely expensive shoes - a time when you know you have to make these dreams come true or you'll never get them - well, shoes hurt now. Fashionista Ann, who could wear a different outfit every day of the year, and has a hundred pairs of shoes with five inch heels to match,  has taken to wearing slippers and sweats out of the house.

Slippers!

And sweats!

Out of the house!

Sacrilege.

There is too much discomfort in my hips and knees to walk around in any kind of heels these days. And, I have no place to go any more, as I had to give up my job and most activities.  I have no energy or appetite for meals out.  Combine that with a kid approaching college and you realize buying pricey shoes like Louboutins would be a waste of a dream.

I still wanted to try some on though.  And, just recently, to fulfill that dream, a kind friend lent me hers.

So here it is!  A day in the life of a metastatic cancer patient in her red-bottomed Louboutins.

It is lunchtime, and I get a little reading in before  I have to leave for chemotherapy

Getting my chemo, oh yeah.  Cutest one in the infusion room.

My exuberant puppy Trista welcomes me home.
Time for a nap

Steroids give me enough energy to cook!


And, we end our day watching TV on the couch

So you see, my friends, a gal can still wear her red-bottomed Louboutins doing household chores and going to chemo, just like the movie stars do.  Here's the trick:  carry them in a separate bag, wear slippers, and slip them on right before the flash goes off!

Thank you to J. Nathan Higdon and Trenia for allowing me to have this much fun!