Over the last several months I have tried to put into words the experience of cancer.  You should know, I write for myself.  [c]ancer can be a very isolating place even when surrounded by the love and presence of family and friends.  But I write for other reasons too.  I write to keep my dear family and friends updated on what was going on and to try and make you understand what we are going through.  I also write, in significant part, because of a desire to give volume to the countless voices of people suffering with this awful disease.  I have received several emails from strangers asking me to please not stop writing (sorry, I know it has been a long time since my last post).  Hmm, at some point, when this is really done, I won’t have anything else to say.  At least I hope I won’t have anything else to say on this subject.  But I was told by these others that when I write, they hit print and distribute to their families and friends in an effort to make them understand what they’ve been through and how they feel.  Wow.  That’s fairly powerful stuff.  That is exactly what I wanted to do…empower ourselves by speaking up.   So as long as you are willing to read, I can continue to write…for now…

I have described cancer as the terrorist, a hurricane, tornado, the enemy, the devil (and it is all those things), and today an earthquake.

Officially speaking (and in its simplest terms) according to Wikipedia, an earthquake is the result of a sudden release of energy in the Earth’s crust that creates seismic waves.  In other words, all hell breaks loose when the ground literally crumbles and falls out from beneath your feet while wearing five inch stiletto heels and you, in an unfathomable nano second, disappear into an excruciating oblivion without light or air.  Yet, here we are, having survived the initial wave.  What could be as bad? OH oh oh, I know…the aftershocks.

Aftershock:  I am a post menopausal woman who has survived cancer before the end of my fortieth year.

I would say I needed to look in the mirror to make sure it was really still me [see supra aftershock re funhouse mirrors], but I’m unrecognizable.  That, I am reading about someone else’s awful tragedy, not sharing with the world our own trag-er-triumph.   I am so grateful that I did not have the cliff notes version of my life in advance to warn me of this cancer fight because I am not sure I would have had the strength let alone courage to endure. But here I am, still laughing (most days), still smiling (a lot of days), doing better than surviving – I’m living MY life (usually) – just with a little more time spent cooling off with my head in the freezer.

Aftershock:  FEAR is both a run-on and complete sentence.

Fear of what?  Fear of cancer returning and taking me away from this life.  Nothing less, nothing more.  So many people say, “I’m amazed and inspired” [we’ve already established how I feel that wasn’t earned] and “how well you have handled this [see earlier post, you have no choice].  It is true, I am moving forward and scraping together every bit of courage I can but you should know the truth, I still live with fear and anxiety every second of every day.  It torments my sleep and it interferes with the true clarity with which I have always lived my life. Sorry to repeat, annoying I know, but I am not asking that you understand.  Harsh truth is that there is no way you can, no matter how close to me or the situation you are.  These shoes are uniquely mine, as are yours to you.  What you can do [for me and any others similarly situated that you may know] is to respect this fear as my reality and not minimize or invalidate these feelings.  With all my heart, I hope you never “get it.”  I am confident and hopeful it will get better with time, and I am trying mightily, but I am also choosing to use the same guts that I rely on with the medical/physical stuff to be honest about how I feel.

Aftershock:  Socializing.

“Wow!  You look fabulous!”  People people people, cancer and its treatment have taken many things from me, eyesight not being one of them.  Is it that you mean to say, “Wow, I expected you to look worse…so I’m pleasantly surprised?”  Or is it that you just don’t know what to say and in an effort to be nice, you speak creatively thinking that is what I want to hear?  Listen, I am grateful to be alive, and while I do not pretend that my current physical status pleases me, because it does not, there is no need to lie to me.  Although I really do appreciate your kindness…talk to me normally and honestly – I swear it is still me!  It remains a big world with lots to discuss other than my cancer.  With all my heart I appreciate the concern but if I change the topic, consider cancer off limits.  It is not that I am unwilling to share, it is just that I do not want to be defined by my disease.

And while we are discussing social interactions, I will get to the heart of the reality of attending and supporting charity events.  Especially ones most near and dear to my heart…aimed to ridding the world of cancer.  Let’s face it, cancer is not a romantic comedy.  These events are heavy.  Heavier still because of this little life experience of mine.  I am learning, however, that the fun and laughter is for the taking.  At one particular recent event, my brilliant sister devised an old fashioned drinking game of sorts… every time the speaker sniffly uttered the word “cancer,” D-R-I-N-K!  I know, I know – you are thinking, grow up, you are not in college any more.  But I’m thinking it turned a potentially overwhelming experience into one filled with laughter amongst family and friends.  Never forget to laugh at yourself and laugh with others…often.

Aftershock: Where the hell did all the adrenaline go?

I’m like the energizer bunny, I go and go and go.  And long after everyone else is tired from watching me go, I go some more.  In 40 years, I haven’t sat still.   And I certainly don’t tire.  But WHOA!  I am exhausted.  Some days even more so than in the middle of chemo.  It is as if my body is only now realizing what it has been through.  And concentration, forget about it [see below].  I tried to work and by 1pm my brain hurt so much I’m not sure I knew how to spell my own name.  I feel like since I am officially  “better,” I am expected to actually be BETTER.  Yet, while in significant and wonderful ways, I truly am better, in so many others, I have a long way to go.

After-what?:  Crap – I can’t remember what I was going to say.

Of the many long term side effects, memory loss and lack of concentration are the most frustrating.  There is nothing to make you question your sanity like not knowing what you are talking about.  I have always prided myself on my intellectual successes. Now, I’ll have survived cancer only to still end up in a padded room.

Another good one:  Funhouse mirrors.

Imagine going to sleep a reasonable looking person and waking up totally distorted and different from head to toe.  Booyah!  Total ego massacre.

I told you that I was walking into the hospital for this latest adventure in surgery land standing tall, all be it hairless.  And I did.  Felt good.  No, it felt great.  Because it was me.  Not me wishing or pretending I was someone else.  Well, if I am to be totally honest, I still wish it weren’t me, but at least I’m not pretending. So that’s it, Freda-the-hot-itchy-mess, Claire-the-smart-and-sensible, and Elle-yah-my-hair-was-never-that-nice are spending their days in my drawer while I am (mostly) getting used to Chia, the new me.  My baseball hats are for sun protection and team allegiance and faithful friends Hermes and Pucci are being worn on my neck and waist and not draped in an effort to hide my head.  It isn’t glamorous like I “was.”  But it’s me.  The me of now.  That takes a lot of getting used to.  It actually makes me deeply sad when people comment on how much one of the wigs “look like me.”  They don’t look like me, they look like what I used to be.  Now they are a knife like reminder of exactly what I am not.

The truth is, lousy fun house mirrors aside, I really am standing fairly tall [or is it the heels?].  A girlfriend said something that got me today at lunch.  “If we both close our eyes, it is just you.”  The same old you.  THAT’S RIGHT!  And you know what else, I like that girl.  The truth is, I’m ok with being her…cancer and all!  So I don’t need to hide under Freda, Claire, Elle, Pucci, or even Hermes anymore even if this new outer me doesn’t turn as many heads, at least in a good way. I posted two pictures, one is my not-so-glamour-but-freedom-shot taken as I left the hospital about eight weeks ago and the other is from the event last week.  I’m embracing the me of now!  Think of it as my finding my way from the short fat mirror room into the tall skinny room?  Either way, I’m going to make it.  I’m certain of it.

Aftershock:  Perspective is a vindictive bitch.

Here I am whining again about all things cancer, when with no warning or chance to fight at all, a vibrant, wonderful, young man was killed while riding his bike training for a race.  RIDING his bike.  One second he was here living his life in an exemplary way, and the next he was gone.  I can not begin to make sense of this kind of tragedy…perhaps because there is no sense to be made.

We all know that whatever ails us is the most serious problem in the world because it is happening to us, but I can not help but think how lucky I am (how insane is that, I feel foolish because I only have this).  He was a close relative to dear friends, and a truly good man.  He was 36.  His wife is a widow.  His children lost their dad.  I’m here, thriving…despite what I’ve been/am going through.  Perspective…she is unfair indeed.

Aftershock:  Nothing is nothing…ever again.

Every bump, lump, scratch, wrinkle, and pain is cause for alarm.  And not just my own paranoia.  No doctor in their right malpractice insurance paying mind is ever going to dismiss or take a wait and see approach again. That’s fine…to a point.  But I am coming the harsh realization that It means lots of angst, tests, and ruling out.  It also makes it harder to ever move forward to that illusive, cancer is a part of my past mentality.  For example, I have been doing very well…in the mental department.  But I found a “lump” in my non-cancer non-existing right breast.   I did not panic [how unlike me] but did point it out to the professionals.  Now I “knew” it was nothing.  It wasn’t there before and did not grow overnight (not to mention my beloved surgeon looked everywhere less than two months ago), so my razor sharp brain told my inner panicky self that it was nothing more than a byproduct of my last surgery, some kind of cyst or scar tissue.  My oncologist seemed more concerned throwing words around like lymph node.

I sure hope I learn to handle these experiences better in the future, because despite said razor sharp mind, yesterday my far-sharper fear had me near full blown hysteria before 1pm.  By the time, my lump was determined and confirmed to actually be nothing I was a wreck.  And this week I still had to get through my “routine” cardiac exam to make sure my heart could continue to handle the lethal drugs I get so that cancer never returns.

I fear I’m in for a long road of these worries, scans, and procedures despite my “cured” status and aggressive treatment choices.  I’m not sure I understand the extent of this reality before.

Aftershock:  The more things change, the more they really do stay the same.

In case you wondered…when a person stares down a life threatening situation, do they abandon all their other useless fears and insecurities…the answer is no.  For example, I am no less terrified of flying.  I have also made peace with the fact that there are people that I wished cared but do not, not really anyway and accepting the love from people who I doubted cared, but they really do.  As for the people who care, you know who you are, I need you to know you were as important to my survival as any medicine I took.   Your friendships are a blessing, you deserve more thanks than I could ever communicate.

Aftershock:  I have lived long enough for what I hope is the first of thousands of times my kids “out do” me.

That is a basic human truism, right?  You should live long enough to see your children surpass you in many and varied ways.  This week my eight year old skied like a pro.  And I mean actually like a pro.  As in up to the summit, down with skis parallel, and with no fear.  Up and down the mountain on all terrain, for seven hours a day.    And my four year old, well, he was kicked out of the regular program for his age so he could join the “superstars.”  He too took the regular lifts up the mountain and skied with the confidence of someone twice his age.  The only tears from them were when it was time to come in for the day.  Just a silly mommy brag, but it got me thinking about all of their future moments.

It is true that really, what I hope, is to live long enough to see my children become nicer, smarter, better, more successful than me, but this was a really fun start!

Aftershock:  What do you mean there is nothing left to do?

Do nothing is not in my lexicon.  I have been so focused, steam roller propelled, maintain fight attitude mantra, duck and jibe 24/7, whatever you do, don’t dare and stop or breathe too deeply driven and now there is nothing left to do (other than five more months of herceptin, five more years of hormone limiting drugs, and at least one more surgery)? And I’m just supposed to trust and have faith that I am forever cured?  Have you met me?  The cancer let-down.  That’s one (a big one) I hadn’t contemplated before.  Perhaps this surgery was the last straw and now I have completely lost what was left of my mind, but I miss the aggressive treatment.  With treatment there is a plan of attack, get through each step and tackle the next.  Now I’m supposed to simply be “ok” with my beast of a shadow (that is one of my next posts) and go back to (are you ready for this nonsense…) NORMAL? [Perhaps I should have maintained a video diary instead of a written one so that you could see my eye rolling and hear the skeptical laughter in my words.]

Aftershock:  Waking up and realizing your first thought was not about cancer.

And the previous nights dreams didn’t leave you sweat soaked or cold.  Realizing that maybe the warriors before you told the seemingly impossible truth that one day do move forward with your life leaving cancer behind.  These days are far and few between, but I have had them, so I know they exist and look forward to them becoming my new normal.

Aftershock:  My Triumphant Spirit

Realizing that the most important force in nature is the human spirit…and I have one!  So important is this realization…you will have to wait for a future post to hear what I have to say about it.

Logically, I understand that I have done [or am doing] everything today’s art and science of medicine offer to fortify the earth.   But aftershocks…you just never know when ground might rumble beneath your feet.