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.

There is Nothing to Fear but Chemo Itself

I am halfway through my first chemo cycle, and I finally feel enough clarity in my mind and thoughts to write again.  It’s only been a week, but in that short time there have been so many things to say that I’m not sure how to direct this next post.  Do I thank everyone who has helped me?  Do I talk about my experience?  Do I talk about what is next?  Do I list my somewhat comical somewhat pitiful list of do’s and don’ts?  This is why more people don’t blog.  You can’t seem to do it when you have something to say and then everything after is making up for lost time…but then again that’s the way chemo works too.

                Chemo means Fear.  Maybe not in the dictionary, but in life…yes.  Now I say that, and I see the golden opportunity for some positive well intending person to comment that Chemo means Hope.  Hold your typing though, because while you are right, we are talking about two very different things.  Chemo that means Hope is the thought of Chemo.  Chemo that means Hope is Chemo from a distance.   It’s a well thought out plan.  It’s a process you’ve been through and had success with.  It’s an idea.  It’s a solution.   It’s knowing that down the road everything will be okay…

                That’s not the Chemo I’m talking about.  I’m talking about the in the moment Chemo.  The one that happens right after treatment.  It’s more than a thought.  It’s not from a distance.  It’s no longer just a plan.  You’ve barely started.  You can’t even form ideas.  There is no solution.  It’s knowing that the road has only just begun…

                I didn’t recognize my cat one morning.  Sammy, my cat, jumped up on the kitchen counter as I was attempting to eat cantaloupe pieces brought from a sweet friend (thank you).  I stopped eating and just stared at him.  Part of my mind was trying to convince me not to be scared…this was Sammy.  However the rest of my mind had no idea what “Sammy” was…what “Cat” was…what “Pet” was.  So I just stared at him and he stared at me until I became so afraid I slowly backed away into my bedroom and shut the door against the creature living in my kitchen. 

                The trouble is that you have an obvious fear…unknown creature in kitchen that you feel should be your cat…but that obvious and present fear compounds into many possible fears.  What if I can’t recognize my husband?  What if Sammy never feels the same again?  Was Sammy as afraid of me as I was of him? (the answer to that is yes, but we have worked it out since.)

                The nausea is a fear that is battled constantly.  Everyone says it’s not that bad if you take all the medicine when you are supposed to.  I was afraid to miss a medicine so I can tell you I definitely took every one.  The medicine may keep you from actually vomiting, but it does not stop you from feeling like you are going to vomit any moment for four days straight.  You fear it getting worse.  You fear it won’t go away.  You fear you aren’t getting your nutrition.  You fear your favorite foods will be lost to you forever (sadly, peanut butter crackers will now be a thing of the past for me).

                One night I had crystal worms in my vision.  It feels just like it sounds.  One moment I could see just fine and the next moment everything was bright and distorted, and it felt like I was looking at the world through crawling worms made of crystal.  Maybe now that I know it can happen and will go away I can appreciate the magical quality of it, but that is going back to Chemo as Hope.  During Chemo as Fear there is nothing magical.  There is just panic that you’ve just lost your sight and you are desperately looking at your husband wanting to see his face again.  And once it does go away you are afraid of the idea of ever not being able to see that face again.

                Finally you have the fear of the absence of yourself, and that is a fear that is imbedded in every single aspect for those few days….because you are NOT yourself.  You do not function, think, talk, move, feel like anything you have ever been before.  This is a feeling that I am not sure I will ever be able to put into words.  I call it Chemo Brain and it simply means an absence of everything you.  Honestly, if I talked to you between Friday through Monday there is a strong chance that I remember very little about it.  That is scary, because there have been so many who were there for me, so many who loved me, so many who helped me in ways that were great and small and the whole time you are worried you will never be able to thank them enough.  You worry that your lack of communication will be construed into anything other than a complete loss of self and functionality.  You worry if you forget something they won’t understand that it doesn’t take away the fact that your pain was lessened for a moment because of them and in that moment you couldn’t have been more grateful.  You worry that even if you do remember and you do have the moment to say thank you, words will not be enough and you can only hope they know…

                This is what I mean when I say Chemo means Fear.  In those few days there is very little hope, because there is no room for hope in the madness that consumes your body.  But then one morning you wake up, and you feel just a little better.  One time someone says, “just a little longer and you’ll feel a little better,” (thank you) and you know they are right.  And that is when Chemo as Hope steps in.  Thankfully his visits last much longer…

               

                And for those of you who read through all of this hoping to find the list of do’s and don’ts, here are four to keep you entertained (I can guarantee if you are reading my blog you are not a don’t):

1.  Once your body is starting to feel better it can do wonders to your spirits to just sit outside for a moment and enjoy the sunshine.  A few people have suggested this to me and it has been a beautiful warming idea and I thank you.  (You know who you good little biscuits are).  However if it is the day or two after chemo, please do not send me a message telling me to go sit outside and enjoy my day, because I feel like DEATH, there is NO ENJOYMENT, and instead of thanking you, I will only want to tell you where I think YOU should go sit….it may be warm but there’s no sun.

2.  It is really helpful to give sick people reading material.  The first couple days after chemo you can’t really read, but once your eyes settle down it offers a nice way to pass the time and get your mind off of things.  I’ve had several nice book gifts and book suggestions and I thank you.  (You know who you good biscuits are).  However, it is a horrible idea to not look through a book you are giving to someone with cancer to make sure the book is not filled with people who are dying from cancer and talks about important rituals as you prepare yourself for death…I don’t think I need to explain why this one is a don’t.

3.  This one is tricky, because it is unavoidable to a degree, so really what we are going for is tact.  When people find out you have cancer they want to share their personal stories with cancer.  This is normal.  This can even be helpful, because it helps remind you that cancer is fairly common and you don’t feel so alone.  We all know that people die of cancer.  When you want to share your experience with cancer, I understand that sometimes that is going to be the end of that story and so there should be a little careful navigation on both parties.  Obviously, I want to be there for you and feel bad for your loss.  Obviously you feel bad for my situation and don’t want to scare me, so let’s both just let that story unfold naturally.  Basically saying it ANY other way than the following is acceptable:

Me: “I have breast cancer.”

You: “My cousin’s wife died of breast cancer.”

Such an immediate reaction of death connected with my situation is uncomfortable for me.  As selfish as it makes me feel, please use a little tact and I’m sorry for your loss.

4.  Everyone wants a hug from the girl with cancer.  Let’s be honest…the girl with cancer wants a hug too.  But the girl with cancer just got a port-a-cath put in and for the most part hugs are uncomfortable at best.  One wise soul gave the “to the right, loose, quick, shoulder pat hug” and it’s the only one that doesn’t make me nervous.  You don’t want to hurt me and I really don’t want to tell you if you hurt me so let’s go with looser is better for a while.

                Thank you  Reader for visiting my blog.  If you’ve read any of my writing before you’ll find evidence above that Chemo Brain has still not fully gone away, but I appreciate you reading and listening and being there.  J

-The Perky Pepper

If the first step is knowing, the next twenty are realizing.

                When you tell people you have cancer they usually ask one of two questions.  When did you know?  How did you realize?  I had never really thought about it before, but I understand now that knowing and realizing are two separate things that don’t necessarily coincide.

                How I knew I had cancer is a very simple story.  One Wednesday I felt a lump.  It wasn’t just any lump.  It was a large mass that suddenly you could see just by looking at me.  By Friday it was painful and swollen so I went to the doctor.  My doctor told me to cut down on caffeine and I should be fine, but he sent me for an ultrasound just in case.  The ultrasound doctor said he was fairly certain it wasn’t cancer.  Seventy-five percent sure as a matter of fact, but he said I needed a biopsy just in case.  The biopsy doctor said it seemed harmless enough, but wanted to verify my phone number just in case.

                By the following Friday I was at work when my doctor called.  He asked me to come in and see him.  I told him I was at work and that he could give me the results over the phone. 

He said, “I don’t want to have to.”

                That is the moment I knew I had cancer.

                Realizing I have cancer, however, is a much more difficult story.  It hasn’t come in one defined moment, but instead it comes in waves and takes the form of panic attacks. 

                When you first know, you don’t actually think about having cancer.  You have thoughts that surround cancer.  You think about money and your apartment.  You think about telling your loved ones and how you will get them through this difficult time.  You think about the plans you had for next week, next month, next year.  You think about your husband and you hate, hate, hate that this is happening to him.  You think about your looks changing and wonder how self conscious you’ll feel.  You think about work.  You think about your pets.  You think about insurance.  You think about doctors and hospitals.  You think of everything except cancer. 

                When I was young I went to the beach for a family vacation.  It was a small island off the coast of South Carolina and the only way to describe this beach is beautiful and aggressive.  The shores were lined with as many shark teeth as sea shells and the waves were notorious for their strength during storms.   

                One afternoon I was swimming in the ocean when a storm started to develop.  I noticed that the waves were getting higher and carried more force.  I loved the way they felt as they crashed on my body, and it became a game to see how long I could withstand the ocean’s power.  I stood in the water and buried my feet deep into the sand and waited for each wave to take their turn.  Sand and debris between my toes, muscles tensed, and face uplifted I would watch them come, and privately laugh at the others who ran for the shore.  When they hit I would lose balance momentarily, but I held my ground and I reveled at my own strength. 

The first thoughts you have after knowing you have cancer feel like those waves.  Money.  Crash.  Apartment.  Crash.  Family.  Crash.  Friends.  Crash…but you are strong enough to stand your ground.  You feel proud of yourself.  You feel you have everything under control, but what you don’t know is nature is not above making you feel safe just to tear you down.

                It seemed that the waves were so slowly increasing in size, that I didn’t realize I was in trouble until it was already too late to back down.  One moment I am standing there feeling strong and proud, and then the next moment I was filled with dread and fear as I saw the size of the wave that was already starting to crown over me.  The wave hit me with such force that I felt the wind get knocked out of me and my body was completely submerged under water.  I tried to swim, but the undercurrent was pulling me further away.  Panic set in.  I couldn’t breathe.  My mind was firing off random thoughts and I frantically tried to fight against the ocean as it unleashed the fury of this wave and all the waves that came before it.  I felt like I was going to die. 

The big wave is what a panic attack feels like.  One moment you are fighting the brave battle and the next moment you realize you have cancer and the weight of that thought and all the surrounding thoughts you have already had come crashing down to destroy you.

                When the big wave hit me that day on the beach, I was fighting so hard against what was happening.  Soon, however, my body was exhausted from fighting a battle I would not win.  Suddenly I thought a very simple thought, “Just don’t fight it.”  My body began to relax and my mind just kept chanting it over and over. 

When the last ounce of fight had gone, the wave carried my body on its natural course.  I was washed up on shore.  I was beaten down.  I was exhausted, and maybe even a little humbled, but I was alive.

It took me accepting the path that wave was taking me down to come out the other end.  It’s the same thing I’m learning to do when I have a panic attack about cancer.  I tell myself to let it run its course.  Sometimes it is easier than other times, but slowly I’m doing it.  So when people ask, “How did you realize?” I will tell them instead how I knew, because realizing is a storm that is still currently brewing and I’m still learning to not to stand and fight it.