Hi!  Many have reached out and asked why I stopped writing (thanks for letting me know both, that you care, and that you enjoy [and want more of] my dribble).  You are right, it has been too long since I last posted.  The truth is, I thought maybe I did not have anything left to say.  I was wrong.  Then I thought I had too much to say to be interesting let alone helpful, leading to about a dozen never finished entries.  I was wrong.  Alas, I went to clean-up new entries, only to “save” a blank page over what was no doubt award winning prose.  Wrong again. 

 In any event, I am here now and thrilled to tell you that I am doing (mostly) great despite my ongoing awareness.  Plus, December seems like a better time to talk (annual rant) about awareness as my entry will involve far fewer curse words now that I am not drowning in the pink.

Awareness is waking up one day and everything is perfectly normal but going to sleep that night with a kind of fear you did not know existed after a routine test catapults you into a suffocating black hole sans flashlight.

Awareness is enduring the absolute unthinkable and then, incredibly, somehow moving forward in your life with the freedom only time and distance can afford.  It is feeling your virgin hair blow in the wind as you drive the exquisite winding roads of Tuscany on a dream vacation with your husband and dearest of friends.  It is finding the confidence to just smile without embarrassment or further explanation or qualification when someone says, holy crap – you cut off your hair.    It is constantly searching for an illusive new version of calm over the chaos of fear.

Awareness is walking the mall in October only to be bombarded with sales campaigns of pink and promises of a cure through donations of minuscule amounts to eradicate a disease that rightfully should no longer exist in our world.  While strolling recently, I saw a woman wearing a shirt and accompanying scarf in a way that I knew the hell she was in.  Without thought or intention, I gave her an “oh sweetie, I get it, it sucks, but it is going to be OK” smile.  She shot back with a monster F.You. smile in return.  She did not recognize me.  She may have thought I desperately needed a new hair stylist, but she did not recognize me.  Do you get that?  I am far enough away from my ordeal that she did not see [the cancer] me.  And perhaps more significant, for g-ds sake, here I am still sudsy from my soap box stint on not looking, acting, or treating cancer patients with your own version of the tilted head syndrome schtick and I.did.it.to.somone.else!  I should probably be publicly flogged for this. I cried in shame knowing exactly how I had made her feel.  But still, it made me oddly aware of my continued recovery.  Do you think that make me less aware?

Breast [c]ancer Awareness is amongst the greatest marketing profiteering ventures of modern history.  I hope you do not misunderstand, as I said last year in my October pity party; the pink campaigns are a beautiful thing.  If you have a mammogram that catches your cancer before it kills you- you win.  Awareness wins.  But it is so much more complicated than that.  And it upsets, frustrates, and even angers me that we seek to profit on these efforts.  How many bits of merchandise have you bought for the cause? Maybe even with me in mind.  I have…in fact; I bought a sweatshirt for a friend who was recently diagnosed.  Cute shirt!  Bought it from Ellen.  Go Ellen!  While getting jiggy on TV she is spreading the gospel and no doubt saving lives.  She is also profiting on my misery and pain.  It was after my purchase that I noticed the small print indicating it is only a tiny portion (10%) of the proceeds that are donated to breast cancer causes.  100% of the proceeds ought to go to eradicate cancer, no?

Awareness is the stifling discomfort of reading two new “studies” in the last week [yes, I have had a regressed from my internet reading ban].  Study One: too many women are “electing” (really funny shit) to have a prophylactic mastectomies of their other non-cancerous breast even though, statistically (another hoot of a word), they have a relatively low risk of developing cancer in that seemingly healthy ta-ta.  The suggestion is that we are opting for radical surgery based on “fear” of recurrence (go ahead and say it with me…DUH!) when in fact, statistically (there it is again) the ultimate likelihood of survival is unchanged. Are my feelings so irrelevant to my liklihood of survival? Well slap me senseless, I do think these so-called experts are calling me a fool.  The epitome of unmitigated gall.  Statistics in their finest form are not living, breathing, emotion filled beings.  Statistics based on limited studies can not inform everyone’s choices.  My life is worth more (I hope) than a number.  Are we not each entitled, right, to make choices that best suit our particular situation and needs?  Remember my manifesto?  Pride, Confidence, No Regret.

As if reading about the study was not bad enough, while packing the kids lunch, I had to listen to Nancy Snyderman opine on the Today Show, that women like me, who have early stage cancer in one breast are “WRONG” to have a bilateral mastectomy.  View good from the cheap seats Nanc? Whatever my motivation in making the decision I did, it is MY life, and I am proud of the course chosen.  I shudder to think of restricting a woman’s choice, her life and death choice, to be made the way she deems best, whatever that decision is.  Or of an insurance company relying on this study to deny coverage for a particular course.  A single option does not fit all.   How can we possibly be so cavalier knowing some woman somewhere is packing her kids lunch with Stage 4 metastatic disease because she was forced to make particular choice (whatever that decision was).  Or never knew a moments peace since her diagnosis because of that decision.  Or cried in disgust and shame at her disfigured body where the artistry of reconstruction by a talented surgeon could have made her [close to] whole. 

Just for the fun of it, I then read the New York Times article about Study Two: suggesting mammograms are all but a waste because while they pick up cancers earlier, “the number of cancers diagnosed at the advanced stage was essentially unchanged.”  The article goes on to say that if mammos caught more of the nasty cancers sooner then the data should show a reduction in advanced cancers diagnosed but that did not happen.  Awesome.  Fabulous.  Thanks a lot.  We know, in hindsight, my cancer was one of those nasty ones.  For me, early detection and aggressive treatment likely were the difference between a long life and a death sentence. 

Awareness is the dissatisfaction that dollars that could be used to developing cures are instead being used to inform these deeply personal decisions or move away from routine diagnostic tests.  Whether the choice is a wait and see, lumpy, masty, single, or double – I say again, and beg in doing so, leave such lifesaving and altering decisions to women and their chosen doctors based on their unique facts and circumstances. 

Sigh…  I confess, by 9 am I was darn close to falling off the Ativan wagon. 

Indeed, awareness is sometimes measured in movement and recovery which is sometimes two steps forward two steps back and too often skewed in the backward direction.  I am aware that the tres demonios of guilt, gratitude, and anxiety are lifelong enemies.  But still…I wish I could make them disappear.  That stories of recurrence or death of others did not send me reeling.  I know the odds…the highway is far more dangerous, yet I brave I-95 daily to go to work usually on my cell phone (hands-free of course).

Awareness is the heartbreaking reminder that as a childhood friend prepares to say goodbye forever that it just as easily could have or one day be me…or you. 

Can you imagine (the obvious answer is that you can not, I can not, even with what I have been through) their holiday toasts?  We toast to our health, our presence, our victory over disease…  We toast to a better year ahead… To our children and sharing their future… She knows the journey is ending and that she will not be here… 

Our country just spent nearly 6 billion dollars on an election cycle.  Yes, you read that number correctly.  6 BILLION.  Forgetting putting that money, instead, into our troubled economy – imagine the dent we could make in fighting disease.  And while I would prefer all 6 BILLION go to rid breast cancer, I can share.  How about diabetes, autism, mental illness?  6 BILLION could go much further than politics and rhetoric, in my humble unasked for opinion.  I was elated to wake up the day after the election to learn that a law had been passed overnight requiring every individual and entity to match their political contributions with an equal “donation” to fight disease.  At least this is what happened in the world according to me…

Awareness is not good enough.  Not for me, and it should not be for you.   Do you truly understand or is it that you maintain an uncomfortable coexistence with the idea of cancer touching your life.  A voyeur reading someone else’s story but not truly understanding how literally life is obliterated in a second.  Like a teenager who drives too fast, has unprotected sex, or makes other decisions without appreciating what might lie ahead.  Feelings of invincibility are no doubt one of life’s greatest acts of self preservation but they will not protect you, not really, in the end.

I hope that my words will not be misunderstood.  I am not advocating for any particular course, rather, I am insisting that awareness turn into something more meaningful and that our society allow women and their doctors to make the right choice for their situation.  That we do more together to ensure less disease for everyone.

I am wrong about a lot of things, but am peacefully certain that I am right here.  Awareness is good, but it is not good enough. 

What are you going to do about it?

Much love,

jodi alison