Limbodacious

Trick or (Re)Treat?

You may have heard that today is Halloween.  At work they had a costume contest, and almost everyone went all out trying to win.  I say "almost" everyone because there was one person who did not participate at all.

I'll give you three guesses.

All day long I dodged a constant barrage of questions such as, "Did you not know about the contest?" and "I'm sorry, did someone you know die on Halloween?"  But what they couldn't see is that for this holiday I dressed in the same disguise I do every other day.  Rae, the happy, normal young person.

And oh yes, I go all out.  Note the attention to detail.  See the super-high skinny heels to ward off any suspicion that I am concealing debilitating arthritis?  See the doctor's appointments scheduled at the ass crack o' dawn so I don't attract attention by taking time off for some mysterious ailment?  See the nearly saint-like ability to give an empathetic nod and not say "Oh, so you think that's bad..." when continually assaulted by the sob stories of patients and coworkers?

But the most important piece of the costume is the mask of bland complacency that I get up and put on day after day.  The plastered look that says, "Hey, there's nothing remotely extraordinary about me," and "Hey, it's not ironic at all that you said you wish you had my life."   That is the look that makes the costume almost frightening in its realism.  It is so believable that when I see it in the mirror, even I get a little spooked.

So yes, I heard about the contest, and no, I didn't have a traumatic childhood Halloween experience.  I am just too busy pretending not to be myself to pretend to be someone else.

Remember How I Said We Looked Everywhere and Didn't Find Cancer? Yeah, Funny Story...

The other night I went to the hospital for what I thought was worsening arthritis in my hip.  After a few xrays, a CT scan, a bone scan, and drug-assisted nap, I awoke to a familiar face, Dr. Feisty.

The cancer patients among you will understand the significance of a gyn/onc in the ER in the middle of the night.  They don't get out of bed for good news.  She told me I had a tumor on my bone, which, she added, "is a very strange place for these things to pop up," as if she was anticipating a threat of malpractice.

I assured her that I believed she had made every reasonable attempt to locate the tumor, but sometimes shit happens.  Especially to me.  After a quick chat, she went back home to her bed and family.  On her way out, she noted, "It hardly needs mentioning that we will be going forward with treatment this week."  I nodded. 

When I woke up disoriented in a cold hospital bed, the hope that it was all a nightmare was stopped in its tracks and vaporized instantly.  This is really happening, I thought, I really have to go through this again. 

This is going to be terrible.

It hardly needs mentioning.

Brass Tacks, Laugh Track

For the purposes of this post, I have to ask you to suspend your belief in the following firmly-held and all too rational principles:

1.  People who don't have cancer should avoid chemotherapy, and

2.  You should be careful not to ingest poisons. 

I know I have not been too forthcoming about what is crappening with my health.  This is partly self-preserving emotional shutdown, partly I don't really know what the hell is going on myself.  But I feel I owe the best explanation I can provide to my regular readers. 

We, and by we I mean my doctor and I, have crossed into the confusing, scary guerrilla warfare phase of my treatment.  We don't know exactly who we are fighting or if the enemy is even armed.  My numbers are sky high and yet, there is no visible cancer anywhere in my body (and believe me, we looked everywhere).  We had to make the decision whether we would treat the numbers or active disease, and by we, I mean my doctor, because I simply Cannot Deal.

Apparently, we chose to treat the numbers.  Because the numbers, my friends, the numbers are very bad.  So even though I do not "have" cancer in the clinical sense (this is where suspended belief #1 is crucial), I will be embarking on Round 2 of the Big Guns cancer treatment.

I tried to do a little research on treatments, but that lasted about a day before I threw up my hands and gave the decision over my doctor (see aforementioned Cannot Deal).  Time to earn the big bucks, Dr. Feisty.  She, and her partner, and a very Fancy Pants famous doctor all agreed on a treatment for me, arsenic trioxide.

This is where the suspension of belief #2 comes in. 

Yes, we have made the leap from overblown chemo=poison metaphors to actual poison.  And while it may seem counterintuitive to allow someone to infuse you with arsenic every day, it has great results with leukemia patients, is doing well in early clinical trials, is (even more counterintuitively) well-tolerated, and most importantly, was one of only two trials that would allow me to get the drug off-trial (and I already did the other one). 

So, my previous attempts at kicking cancer to the curb have failed, and I am going back on drugs that will make me very sick.  You'd think this news would sadden me, but, not so much.   This is part of the deal, and I knew this day would come.  I didn't think it would be so soon, but that's just got to be filed away under Shit I Just Can't Control No Matter How Much I Wish I Could.  Plus, taking arsenic will surely give me some Grade A I'm-Being-Poisoned pity party material down the road. 

"Whatever" is the word I use to describe this mood.

Overall the news is bad, but not as bad as it could be.  It's confusing and frustrating, but at least at this point I can still use the "If this is in fact a recurrence..." semantics, which I find comforting.  I am scared, but still mentally healthy and feeling good about catching it super-early.  I am not about to jump off a balcony or moan plaintively, "Oh, Zeus!"  I just want to get down to business and get this taken care of.  Again.  And so, onto Phase Two...

Alpha and Omega

It may seem inconceivable now, but I used to be the Life of the Party.  The part of my brain that now works overtime coming up with metaphors to explain what life with cancer is like used to stay busy telling clever jokes and deeply discussing music and literature.  The body that is now boyish and frail was once voluptuous and strong, and men turned their heads when I walked into a room.  There was a time when the Big Thing in my life was telling my then-boyfriend I didn't want to marry him.

But that has all changed, and now it seems that cancer has gone back into the past and retroactively infected my life from birth until now.  But it hasn't, exactly.  To a very few individuals on this earth, I am still the life of the party.  One of these such people is my grandmother.  I was diagnosed just as Alzheimer's was taking hold of her mind.

My aunt, her caretaker, called me to tell me my grandmother had remembered something, a fairly momentous occasion.  "When I was the lunch lady at Rae's school, she loved the pizza," she said.  I laughed in the way one laughs when something is more bizarre than funny.  I didn't remember.  I couldn't look through the window to the past without my current image superimposed.

The girl in the lunch line has been erased and the girl with cancer substituted where she used to be.  She was me, but I am not her anymore.  The girl in the lunch line's life was uncomplicated, and her grandmother served sloppy joes.  I can't remember anything before I existed.

That girl who just liked pizza has cancer now.  She always has and she always will.  The young girl is dead to me.  But somewhere in the lost tomes of a forgetful mind, her memory lives on.

Let It Be Known: I Am Pissed

(Subtitled:  Wherein I Make Fabulous Use of Italics)

It appears that the television is Satan's preferred medium.  Just days after I watched my dreams float away without me, I saw the most hideous, the most terrible, the most infuriatingly vile thing I could ever imagine.

To be fair, I wasn't in the most receptive mood.  I had just spent the evening with a pompous man of the cloth informing me that I was missing God's lesson for me in my suffering.  I nodded and pretended to listen like a good little law-abiding citizen.  I made it through the entire night without living out my daydream of slashing his throat with my freakishly long she-claws while screaming, "Get back to me on that when something even remotely unpleasant happens to you, you ignorant, myopic, brainwashed shell of a man!"  In fact, I did not so much as roll my eyes.

But within me I could feel the rage slowly rolling into a boil.  It is just not true.  My feet started sweating, then it moved up into my legs, making them tremble.   I knew I had to curb it before it took over.

So I plopped down on the couch to allow the waves to penetrate my brain and replace all the hate and hurt with white noise.  I watched the most wholesome, harmless thing I could find.  Nice people write in, and get their ramshackle house turned into a palace.  Everybody wins, everybody feels good (and everybody of the female persuasion gets some nice eye candy as well).  By the end of the hour, I thought I might have even felt the sprouts of a smile on my face when they cut to the previews for the next week's show.  And that's when I saw him.

The devil.

The enemy.

The soulless life-sucking mercenary of the dark side.

The nice guy from next week.  And he was saying, "I really think cancer is the best thing that ever happened to me."

But he didn't just say that.  Just for an instant, he turned away from the rapt nationwide audience while they dried their tears, and he spoke only to me.  "Everybody is happy, you know.  Everybody feels this way.  You're the only one who doesn't.  Tell me, what exactly is wrong with you?"

And that's when the rage exploded.  All the at-least-you're-alives, and the why-can't-you-just-move-ons, and the everything-will-be-okays, and the blessing-in-disguises all converged onto him, him.  Him the man who came out smelling like a rose.  Him the man who thought he was so much better than me just because he was happy.  Him the empty poster child getting a new house while I was losing everything.  And I lost my shit.

I threw my glass at the television and let out a yell that stirred the dogs from their naps and sent them scattering.  I stood shaking but paralyzed, and the shattered glass and my racing heart just added to my anger as I cried out in complete despair.

WHY THE FUCK DOES EVERYONE KEEP FUCKING SAYING THAT?

Hearing it said out loud, breaking the silence of suffering with a smile, calmed me down within seconds.  Somebody said it.  Somebody stood up and finally said no, if I had to do it all over, I would not choose to have cancer again.  No, I will not make the TV viewing audience feel better about their lives by playing the willing martyr.  No, you stupid asshole, there is no lesson.  I said that, even if it was only to my empty house, and it was true.

As my heart resumed its normal speed and my flush skin paled and cooled, I was brought back to the reality that my floor was wet and sprinkled with shards of glass.  As I fetched a towel to clean up the mess, just to let the world know I wasn't quite through yet, I said, "I will absolutely kill the next person who says that."

And that is the truth.

Plowshares into Swords

When cancer leaves you with gaping emotional wounds and lays landmines in your path, something so simple as flipping through the channels can become a game of Russian roulette.   You never know when an episode of ER will feature a childhood cancer sob story, or when the Discovery channel will rebroadcast that damned "14 Kids and Pregnant Again!" 

I was feeling especially vulnerable on one particular night when I ran across a program called, "Anatomy of a Supercarrier."   I knew that in my unstable condition, I shouldn't watch it, but I couldn't help myself.   I tuned in.

It was many years ago when I first saw a supercarrier, although it doesn't seem like that long on account of nothing of importance happening in my life since then.   I was in training for the Air Force.   I fell in love with the incredible feats of engineering, the unfailing efficiency of the structure itself and the people who staffed it, its sheer massiveness.   I watched, mesmerized, as each plane took off.   Just as I was positive that each one would surely be hurled off into the ocean, they would lift off and be airborne, graceful and beautiful.  Here, I thought, is a miracle by man's hands.   The Colosseum is nothing when compared to this, a floating city.   We have raised Atlantis.

When my training was over, the first thing I did was apply for a job on one of these massive structures.   I was turned down, which was no surprise.   I fastidiously checked the open positions and applied five more times.   The fifth time, they said yes.   Two months later, 4 short weeks before I was to be transferred, I went into the emergency room in the middle of the night.

We all know the rest.

It was my first Big Disappointment due to cancer.   There would be many more in my future, but none would sting as bad as the first.   I belonged there, so how could it be taken away from me?

Two years and a lifetime have passed since then, since the unfairness of life still surprised me.   Now I have been beaten down into submission, I don't ask "why me" and I don't plead with a higher power for miracles.   This is my life, and often it sucks.   It's just reality, and for the most part I can accept that.   But something was aroused in me when I looked at the TV, and the young men in their crisp uniforms explained their various positions aboard the supercarrier.  They have my life, that should be me.   It stung.

We all have our sore spot, our Great Disappointment.   You're thinking of yours right now... is it a job, a lover, a child?  It is something private and scary and buried deep beneath the things we talk about.   I push it to the back of my mind, concern myself with the daily obligations of treatment, call it a silly dream I once had.   But just as I think the thought is going to drop off out of my consciousness, it takes air under its wings and re-emerges into sight... I miss my life I never lived.