Limbodacious

Do What I Say

I have often said, quite vehemently in fact, that cancer is a random piece of shit with no deeper meaning to be gleaned.  But when I sat across from my dad on Sunday while he told me that he was diagnosed with cancer, I reconsidered.  Maybe I am meant to help him through this.  Or, at least, as a former cancer patient, I have an obligation to help him through this.  But what do I say?  When he says, "They said it's very treatable," do I tell him that "treatable" is hell on earth?  Do I tell him what he is in for, or will that kill his spirit?

(Really.  I want your opinion on that question.)

A few days later I realized that lying on the bathroom floor crying wasn't helping my dad much.  So I went back into my tried and true Cancer Mode.  Emotions Off, Actions On.  Like so many times before, I used my pain as fuel for Getting Things Done.  I called all my doctors and found nominees for The Best Damn Medical Oncologist Ever.  I bought presents.  I made comfort food.  And I wrote some things down that I hoped would be helpful.

Always Get a Second Opinion

Always.  Just, always.  A good doctor is never insulted if you get a second opinion.  If they discourage you from getting one, then you need it more than ever.  Always get a second opinion!!

Know When to Turn Off Your Computer

Information is power.  Information has powers, too: the power to cripple you with anxiety, the power to give false hope, and the power to take all hope away.  Acceptable internet searches: information on and side effects of medications you are or soon will be taking, networking and personal stories, and new treatments only when it is confirmed that you will need to switch.  Ignore any article that contains any of the following: study shows promise for new cancer drug, used for centuries by the Chinese (or "wise men" of any stripe), all natural with no medicine or side effects, miracle, five-year survival rate, or a percent sign anywhere.  Limit your focus when researching.  If you want to know about immunotherapy options, look for that and only that.  Don't get distracted and start clicking on links willy nilly.  Once you veer off your original goal, it is nearly impossible to reign yourself back in, and you can spend literally days on end going down a spiral of increasingly irrational information expeditions.

If you find something you are interested in, write it on a list of things to discuss with your doctor at the next appointment.  Don't research it any more until then.  Ask your doctor a lot of questions so you don't have to hunt for answers yourself.  She is the one with intimate knowledge of your exact case, not Google.

Set a Quality of Life Minimum and Enforce It

I wish I had known this one ahead of time.  Oh, how I wish I had known.  If I could do it over again, I would have set a quality of life minimum for myself at "I am able to get out of bed and take a shower every day."  There were many days I wasn't able to get out of bed and take a shower, and I am a very changed person because of that.  It is different for each person and may evolve over time, but it is paramount.  A life without quality is not a life at all.  If a doctor recommends something that would violate your minimum, refuse.  It is not worth it.  I know this is especially hard in our family, since we have all spent the majority of our lives in hospitals in some capacity, and have great respect for doctors.  But they are not in your body, so you have veto power every time.  I realized my propensity to blindly follow doctors when I voluntarily let one pump arsenic directly into my bloodstream.  Draw the line somewhere.

When in Doubt, Go to the ER

Always err on the side of caution.  They're there all night regardless.

Feel Sorry for Yourself

Don't fight the urge.  If you want to mope around a few times a week, just do it.  And if buying yourself something you don't need seems like it will make you feel a little better, just buy it.  Who gives a shit?  If someone gives you a hard time, play the cancer card and make them feel bad.  Maybe they will buy you something out of guilt.  You are owed this much by the universe.

Get Over Yourself

Your pride is going to take a hit sooner or later, get it over with early.  Accept help.  It will make you and the helper feel good about yourselves.  You will not be able to do all the things you used to - but you are the only person who cares.   No one will mind if you don't work overtime, or full-time, or at all.  They won't be put out if you can't give them a ride or cosign a loan.   People are much more understanding than we give them credit for.  Allow humanity to show you how wonderful it is.  Don't be a stubborn jackass and try to prove to the world that you are still the same, strong super-person.  You're not.  But everyone loves you just the same.

Get a Healthy Dose of Mumbo Jumbo

Do some kind of alternative treatment.   Nothing big, and run it by your doctor first.  Personally, I have a tea for everything.  Immune System tea.  Digestive Health tea.  Sleepy tea.  Energy tea.  Who the hell knows if they work.  But it makes me feel like a contributor to my care, not a passive plaything for trainee phlebotomists.  And there is something to be said for the placebo effect.  If I take my De-Stress tea, I feel less stressed.  Maybe it is the desire to feel less stressed, or just the fact that I am sitting still for ten minutes worrying about burning my tongue instead of more pressing issues.  Or maybe it works, who knows.  Regardless, a routine and a desire to feel better can, many times, help you feel better.

Avoid Chemo at All Costs

If you get a chance to take a targeted therapy, immunotherapy, vaccine, or any normal-tissue-sparing therapy, jump through whatever hoops are necessary to get it.

Did I Mention Always Get a Second Opinion?

Thanksgiving

When people ask me what my favorite season is, I always say Summer.  The hotter the better for me, I tell them.  But that's a lie.  It's autumn.  I love the leaves changing colors, which in my neck of the woods is quite spectacular.  I love cinnamon and pumpkin pies and pears.  I love that the whole world is cast in a soft rosy-orange glow, and all the holiday sales start at all the stores.

Which is why on one particularly beautiful autumn day, Husband and I decided to take some of our dogs out for a nice walk.  As we rounded the corner coming back towards our house, I was overcome by one of those lovely moments where everything that you hold dear is all in your line of sight.  I saw my loving husband that works so hard to make me happy, our charming house that we have fixed up with our own hands, our dogs that never allow our lives to be dull, all on our darling tree-lined street in a friendly and safe neighborhood.

And I just thought, wow... my life sucks.

It's strange to think something you didn't know you thought.  After all, it's just me up there in that head of mine, so I can't imagine how something popped up that I was so surprised by.  So I pushed it to the back of my mind, writing it off as a random irrational thought, like the times I convince myself the milk is bad even though the expiration date printed right on the jug says it won't go bad for another three days.

But that thought just wouldn't be silenced.  My life sucks, my life sucks, it kept coming back and back, louder and louder.  And then I thought, how silly it is to lie about being miserable and liking the Fall.  Why do I categorically deny the things it is so clear I feel?  But the lies help me to feel more like myself, at least on the outside.  I want to like the Summer.  But I am autumn, I am myself a tree without its leaves.  And when the biting winds of November feel like they are blowing through me, it makes sense, because I am shot so full of holes that I am more hole than I am person. 

I think for that reason it is in the most joyous moments that I feel the most despair.  Because when I look at the wonderful things in my life, I see Cancer, and when I think of all the things I have, I can only think of all the things I've lost.  My most precious memories are seen only through cancer's lenses.  The most heartbreaking of which is when Husband and I went to the mall and looked at cute little puppies, and when I saw the one that melted my heart, I looked up to Husband and didn't even have to ask.  We took our new pup to a small field in front of a nondescript building to play that first night.  When I walked through that same field two months later to my first radiation treatment, I thought, it all comes back to cancer eventually.

Then the shame sets in for not being able to be grateful for what I have, then the anger that I have to feel the shame.  And after heading downward in this constant spiral for nearly three years, I see now that at the bottom is an all-consuming depression.  The leaves that were once vibrant oranges and reds are now brown and slimy, and the warm parts of myself have gone barren and cold.  Every morning when I wake up my joints are a little stiffer in response to the weather, a daily reminder that the darkest winter of my life has begun.

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...

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.

Of Waves of Panic and Waves of Change

I had it all planned out: Go to bed at a reasonable hour, get up early, and drive the long distance to attend a wedding.  It was a good plan, and like most good plans, it didn't happen.  Boyfriend and I were just starting our huge fight at the reasonable hour, I slept in, I was late getting ready, and we started the day yelling.   It was only morning, and it was already a ruined day.

The long drive was made longer by the palpable awkwardness of our relationship and the heaviness of our issues crammed into the car with us.  We drove and drove and it seemed like we would be driving forever.  Finally we hit a body of water, and we had to stop driving because that was the destination.

We checked in, we went to our room.  We had an hour to prepare for the wedding, I knew this because it was in the plan.  I felt rushed, the hotel lighting was unflattering, my leg had gone tingly and painful.   It was a recipe for a meltdown. I caked on makeup trying desperately to conceal the rash of acne that had taken hold of my face due to my new medication.  I thought of all the people, the strangers, I would be shaking hands with.  I thought about forcing a permanent smile so rigid that my face hurt, I thought about pretending to be overjoyed at the good fortune of two people I would never see again.  I thought about the unavoidable prayer they would say before dinner, thanking God for his many blessings.

And that's when I lost it.

I was overcome with rage at the person in the mirror I didn't recognize and her ugly face, the 22-year-old newlyweds who would certainly be sending out pregnancy announcements within a year, the people who praised God for his mighty benevolence without knowing that one of the poor, sad people they pray for had somehow made her way into the room.  The fight with Boyfriend, the long drive that made my back ache and my leg go numb, the overwhelming anxiety at the thought of a crowd of people, the feeling of not belonging anywhere, not even in my own body.

It was Just. Too. Much.

I fell into a heap and told Boyfriend to go without me.  It was hysterical, and probably crazy, but there was no way I could go.  I tried to tell him that I just couldn't deal with this stress, that I knew I was being so difficult but things seem to be harder for me than for everyone else.  But all that came out was and unintelligible rash of blubbering and, I just can't go.

It is times like this when people turn to Nature.  It occurred to me that I happened to be about 100 steps from one of the lakes they call great, and when I looked out the window over it, it seemed to call to me.  I went outside and stared.  It was beautiful, and still, and quiet as if it knew that the noise of the world had overcome me.  It was cold, and I was dressed for a wedding.  I could not see the other side.

And that's when I knew.  I can't see the other side of Cancer.  It is too huge and too vast and too deep, it is Just. Too. Much.  Somehow everyone else knew how to take to the lake, to move on, to go about the business of life.  But I just stared, no boat in sight, dressed in an evening gown in the middle of the afternoon on the end of a pier, poorly equipped at the wrong place at the wrong time.

I shuddered, and became aware of how cold it was.  I felt like a picture of myself. All dressed up and no place to go. A ticket out of Cancerland and no idea of which ferry to get on.  Standing on the bank of these mighty waters, I was a metaphor that only I could understand.  For the first time, I did not feel like crying.  I was sad, but there was some beauty in the sadness, a symbol, a place, a moment where the sadness at least made sense.

By the time Boyfriend got home, I had washed and soothed away the outward signs of despair, but my afternoon at the lake was still in the forefront of my mind.  He was too mad to ask for an explanation, which was fine because I doubt I could have supplied one.  I wanted to tell him what the lake had told me, how someday I hoped to look back upon my pain and consider it beautiful despite its darkness and danger, that somewhere very far past the horizon we see there is, in fact, the other side.  I knew it wouldn't have made sense, and partly I wanted to keep it a secret between me and the water.

The next morning, before we prepared to leave, I sat out on the pier one more time.  The lake reflected the early morning sun, making it doubly bright.   I had to shield my eyes.   I wanted to say, thank you for making me feel just a tiny bit less alone.   It was only morning, but it was already a beautiful day.

Whoever Said "Breaking Up Is Hard to Do" Didn't Know the Half of It (Warning: Cop-Out Post Ahead)

I was driving up to dialysis the other morning when something occurred to me... "Oh my God it's 6am and I am driving an hour and a half both ways before work three times a week just to get dialysis."

This simply must end.  I have put off breaking up with my old hospital for as long as I possibly could, but it is getting ridiculous.  Besides the obvious inconvenience of the long commute (and you may have heard about this hike in gas prices), there is the matter of if anything should happen to me, the only people who know just what in the hell is going on will be far enough away to be useless.

It pains me to end my relationship with this hospital... the gyn/onc who said my remission was the crowning moment of his career, the chemo receptionist who gave me a ride home when I didn't feel well enough to drive, the dialysis nurses who checked on me an unheard of every ten minutes, the ER resident who always told them to get a room ready for me before I had even checked in.  Over the past two years, my time at home and my time at this hospital are probably about equal. 

(I must not get sappy and misty-eyed.  Must shift gears from the nostalgic to the infuriating before I lose it.)

Then, of course, there is the hassle of actually switching doctors.  "Switching doctors" sounds so easy, just stop seeing one and start seeing another, but in reality it can be a full-time job.  After some harrowing experiences, I have become to doctors what George Costanza is to dates.  His teeth were too white, she kept saying "We'll see how it goes," he is obviously sleeping with his nurse, and the classic, I just don't like him, okay?  Not too mention that we are not talking about one new doctor.  I have to find a Gyn/onc, Hem/onc, nephrologist, ENT, gynecologist, Rheumatologist, Gastroenterologist, and an Internist (An internist is what regular people call "The Doctor").  I have to reassemble an entire "team" that has privileges at the same hospitals, is approved by my new insurance, and meets the stringent criteria of the World's Pickiest Patient. 

Goddammit.

So, there you have my cranky, long-winded what-I've-been-up-to/why-I-haven't-been-blogging-as-heavily-lately generic lame-o update post.  I mean, besides being exhausted from working and all, I have also been out pounding the pavement interviewing every Tom, Dick, and MD for the exclusive privilege of treating moi.   So far I have only found one doctor, a feisty red-headed gyn/onc who appears more likely to be playing a doctor on Sex and the City than actually practicing medicine.  However, I have some promising leads and hopefully this nightmare of a breakup will be over by the middle of next week.  Which won't be a moment too soon, since the whole thing is giving me a headache.

Fuck.  Now I need a neurologist.

Survivor Wilt

There are two women for whom I would gladly forfeit my remission, if only they could be healthy.  There are two women for whom I have kneeled in a dark church, imploring the Universe to please, just take me if it means you can spare them this hurt, this pain. 

And one of them died.  Why?

Every blink of my eye, every beat of my heart, every hair on my head, is a prayer and a wish for a woman struggling with cancer.  Every time I wake up, I know it will be a day filled with thoughts of the women whose lives have been turned upside-down by this disease.  Every inhale and exhale is a supplication to take this pain away from them, to take it all on myself if it would  give them just a day of peace.

And yet, one of them died.  Why?

My effort is futile, my desire to restore them to their former selves meaningless, my prayers summarily ignored.  Another beautiful, intelligent mother, grandmother, daughter, friend gone, vanished.  Why?

And here I stand, ravaged, but very much alive.  After many doctors told me it was a certainty that I would not survive this ordeal, after I offered my demise should one of these two women go on living.  I should be dead, but I am not.  She should still be here, but she isn't. 

Why?

There is one woman for whom I would gladly forfeit my remission, if only she could be healthy.  I still mean it, if anyone is listening.

Did I Say "Happy"? Because What I Meant Was "Miserable"

When a couple is together long enough, they form their own language.  Sometimes Boyfriend will ask me, "Where are you?"  But I know he means, "As much as I try and try, I just can't understand what you are thinking and feeling, but I want you to know that I will listen to your answer, it's just that I don't know the question."

Sometimes I will respond, "I am sad."  And he knows what I really mean is, "I am sad, and no, I don't know why, and please don't ask me anything else because not talking is the only thing keeping me from crying, and just once in a while I want to go to the bathroom after you fall asleep and not see that girl in the mirror with the red, puffy face and hair sticking in her eyes."

Sugar Crash (Yes, I Know This Post is Ungrateful and Snarky and Poorly Written, and No, I Don't Care)

Ever since I found out I was in remission, I've been so happy.  I mean, I just walk around thinking to myself, "I didn't know anyone could be this happy."  I'm happy all of the time.  Well, not all the time, no one is happy all the time of course, that would be crazy.  But definitely most of the time.  Who wouldn't be happy that they are in remission?  Not me, because I am happy a good portion of the time.  At least half.  Give or take.  Why, aren't you?  What's with the third degree anyway?

Okay, I give in.  I have no glow, no cancer-free natural smile, no rose-colored glasses, nothing.  I am an ungrateful wench who doesn't know how good she has it.  THERE, you happy now?

I don't feel any different.  I still have to go to dialysis, I'm still hard of hearing, I still hobble around from arthritis, I still have to take chemo for Christ's sake!  I thought being cancer-free would be a little more... well, cancer-free.   But every day is still all about cancer.   I can feel the black cloud of Recurrence hovering over me as I try to live a normal life.  I don't know what to talk about when people ask me how I am doing.  I just don't know how to take cancer out of the equation. 

And I feel guilty, oh God, so guilty.   I know there are millions of people who would kill for what I have now.  I was one of them for so long, I would have given up all my worldly possessions and my eternal soul, cut off both my arms, to see that clean CT scan that I saw last week.  So why aren't I happy?  Why am I not jumping for joy, sucking the marrow out of life, spreading laughter and good cheer to all those I pass and...  you know, that kind of shit?

I never would have expected to be in such a funk after receiving such good news.  It is one of those strange, crazy unpredictable human emotions.  I literally don't know what to do with myself.  I am currently trying to cultivate a middle ground between sobbing hysteria and paralyzing fear in which to live my post-cancer my days, but I am pretty much stuck in hardcore blase.  Have I become so accustomed to disappointments and letdowns that I have forgotten how to be happy?  That's what scares me the most, the possibility that cancer has ripped from me all my residual cheerfulness and made me fearful of being happy, lest it be unceremoniously jerked away yet again.

Or maybe I'm just pissed off that I don't feel better yet.  Or I don't have enough distance yet.  Or any one of millions of possible reasons.  Either way, don't be surprised if you get a sneer instead of cheer if you excitedly tell me, "Congratulations!"