Monday, April 25, 2011

Life is not a Rule. It's an Exception.

              Overnight I’ve been turned into a gambler, and that is something I’ve never been.  I simply don’t bet and even if I do the bet is sure and the cost is low.  I’ll bet a cup of coffee or a back massage.  Mostly things I’d pretty much give you if you simply asked me for them, and never anything I’d hate to lose.  Mostly because I just don’t trust the odds.  No matter how sure or appealing something looks, there is always that small chance it isn’t what it seems, and that small chance is what nags at you.  It’s what keeps you awake at night.  It’s what leaves you wondering “why” and “how” when life turns out the way you didn’t think it would.   It’s a small seed.  A small seed that plants itself when you’ve seen the impossible turn into the reality.  A small seed that grows into all of your future decisions.

                And why shouldn’t I distrust the odds?  I’m going to expose a little nerd skin here and let you guys know I’m a big fan of the computer game Wesnoth.  I won’t go into a full description except to tell you that it’s a game where you battle opponents, and depending on different criteria you are given an estimated percentage of success before you choose to attack someone.  I get so angry when I am given an 80% chance of hitting my enemy and I miss with four strikes in a row.  How do I miss all four times with 80%?  It’s infuriating and suddenly your entire battle plan is called into question, because you just can’t trust the numbers you’ve built your army believing in.  80%?  No, I should have been looking at the other 20%.

                And why shouldn’t I distrust the odds? Can you tell me the odds of a junior in high school being bitten by a common house spider?  Fair enough, probably pretty common.  Now what if I told you that spider bite made me allergic to almost everything.  From grass, to sugar to my very own hair and I was sick for two years going into anaphylactic shock and being told to plan for the worse.  You’d say it was impossible and before it happened I would have thrown my chips in with your bet.  Impossible?  No, there was a small chance.

                And why shouldn’t I distrust the odds?  I had shingles of the face when I was twenty four years old.  Who gets shingles, you ask?  Shingles is something little children and older people get.  It is so unlikely that I would get shingles at the age of twenty four that I was misdiagnosed twice before one doctor figured it out.  It’s such a random occurrence that I can’t even find an official percentage of people who get shingles in their twenties to offer you as evidence.  And while we are placing bets here, let’s also throw in the double miracle in the shingles episode.  My eye specialist said I was the first patient he had with my specific type of shingles who didn’t lose their eyesight.  Thankfully on that one I was the exception, but who would’ve seen it coming? (pun fully intended).

                These are just a few examples to a lifetime of similar phenomena both big and small.  It seems more often than not if percentage is concerned and the deal is done, you’ll hear me dazed in a corner somewhere asking in disbelief, “What were the odds?!?”  If anything I’ve learned there are rules and there are exceptions, but the best rule of all is to keep your eye out for the exception.

                This is why you won’t see me betting unless it’s a bet I know is 100% and a wager I’d be happy to lose even if I won.  But now this safe gambling style doesn’t work anymore.  I’m getting thrown in to game I didn’t want to play where the betting is unstable and stakes are high.

                Treatment for cancer is nothing but percentages and chances.  You’re given your options, you’re shown the percentages for long lasting success and you are asked to choose.  To place your chips.  To put in your bet. 

                Before I had cancer I would have said that I would automatically take the most aggressive form of treatment if it meant the highest percentage of long term success.  Simple.  Decision made.  But before I got cancer I think it would have been safe to say I wasn’t betting on getting cancer.  After all, you have less than .43% chance of getting breast cancer in your 20’s.  .43%.  Your odds can only get better if they are at 0.  So of course it would seem simple when I am safely tucked in at night by the big percentage and ignoring the small chance that’s hiding under my bed.

                Before you get concerned, yes, I am currently on the most aggressive treatment plan because ultimately it offers the highest long term success percentage rate, and we already know I’m not one to gamble.  But I find myself asking exactly how much am I willing to give up for better odds?  Some days it just feels like a hell of a lot.  The required ante to even join the game when you are betting against cancer is more than I have ever wagered for.  You’re talking actual body parts, the loss of my life as I intended it for 6 months, and future options such as having children.

                I’m getting a mastectomy because I have cancer.  This is the easiest decision by far.  If I only got a lumpectomy it would come back.  I’d like to bet at least five years of not having breast cancer on a single mastectomy, please.

 I want you to think about losing a part of your body and I want you to really think about it.  Pre-cancer you’d hear my battle cry ring out above the hoard of mutated cells, “Chop off the boob and fiiiight!”  Post-cancer, I like my body being in one piece, so my battle cry sounds weaker and maybe even my voice cracks a little on the last note, but I’m still raising my sword and I'm still ready for battle.

After that, the odds get a little less definite, but the stakes are just as high.  You place your bet on the wrong one and you’re looking at a recurrence of all of this hell and if you lose the bet entirely?  We don’t even have to say where that leads.

I’m getting a double mastectomy because there is an 80% chance of a second breast cancer.  Now imagine chopping off a second, healthy body part because there is a higher risk of it becoming sick later.  I mean I’m literally giving up healthy body parts here based on percentages that I simply can’t trust.

The same will go for my ovaries.  I’d be giving up another body part and my free choice in having my own children, based on an even lower percentage.  40% to 60% chance of getting ovarian cancer.  How far would that number need to drop before I felt comfortable not taking the most aggressive route?  At this point I’m thinking less than .43% since even that percentage has failed me.

Aggressive is definitely better, and that is the route encouraged by my doctors and decided by myself and my husband, but even still there is a nagging feeling.  That small chance is sitting in my ear and whispering its possibilities.  Will I always go through life wondering if I went through all of this to save myself from something that never would have even happened? 

And even if that small chance wasn’t nagging me there will always be a small chance of recurring cancer lurking in the closet I keep most of my fears in. Even the most aggressive treatments can’t offer you a guarantee.  Did you know you can have your ovaries removed and you still have a small chance of getting ovarian cancer?  What the hell is wrong with that?  It sounds like the perfect equation to find me staring at some test results once again asking the doctor, “What are the odds?”  It’s a game of poker where you believe you have the winning hand, you’re betting everything you own on this one game, but the other person has now until the end of your life to show their cards.  Not only do they have until the end of time, they also are fully capable of showing you a winning hand you didn’t even know was part of the game. 

I’m going with aggressive, because my cancer is aggressive and that is something that must be matched.  I’m also going aggressive, because no matter how things end up down the road at least I can always tell myself there wasn’t anything more that I could do.  I will be certain I did not miss an opportunity.  And when you are a girl who does not gamble, and you are thrown in to a game where safe bets don’t exist, you latch on to any certainty you can find.

5 comments:

  1. health care is a privilege not a right. so i am grateful for being able to get treatment. if i lived in another country... i would not be able to get cutting edge treatment, like here in the usa.

    also, i dred the day i am told 'theres no use in doing chemo... it is not working' so i am grateful to be able to do 'something'.
    i am so happy you are taking the bull by the horns and facing this head on, rather than trying to pretend it is not happening. some people bury their head in the sand, if they don't talk about it.... it isn't happening.

    ReplyDelete
  2. I went the aggressive route 19 years ago and am here today. Treatments have changed since then, but I took all that was available at the time, because I knew being dx with Stage IIIB and 16 positive lymph nodes was going to kick my butt if I didn't. Had my first mastectomy where the tumor was and six months later found a lump in the other breast. After a biopsy showed this was benign, I still had this breast removed too. That was too much of a scare for me and it increased my chances of not having a recurrance. No regrets and no looking back. My breasts are gone but I'm still here!

    ReplyDelete
  3. I am in awe, as always, of your courage, Lil Biscuit. Not to mention your writing talent. I'm sure it isn't easy to share some of the intimacies and perceptions of this battle. But I envision with your chin up, sword gripped aloft, and raging out the word "fiiiight" Your armor gleams, my dear. Slay this beast you will and be the Champ that you are (but I've always known you were anyway).

    ReplyDelete
  4. Those odds have been on my mind these past weeks, especially after your past experiences. I mean really, how many times do you have to look death in the face and tell him to ride his chariot on without you? If there is any kind of universal justice, I'm quite sure karma needs to review her arithmetic. In all honesty, I feel it should be me. I'm not just saying that- the numbers would agree. Plus, I've never once tread anywhere near death. My younger sister, on the other hand, had typhoid, rota virus, multiple staff infections, back surgery, and a high risk pregnancy. It's all just so terribly unfair. And I hate that you are going through all this. And I wish I could do something useful, something to take it away and make it better. I'd gladly shave my head to match if you want! I see you already have a collection of colorful wigs. How do you feel about hats?

    ReplyDelete
  5. i have no words but to say i love you!

    ReplyDelete