Sorry, Fifty will have to wait a little while longer.

A perk of my situation is that for the first time in my life, I have “wash and go hair!”  Woot!  Who does not want wash and go hair? This morning while washing and going I got delayed by some foreign obstacle preventing my fingers from their daily rush to clean and get out the door on time.  What’s this you ask?  A knot!  As in my hair is long enough to have knots.  Ever see a 41 year old fake breasted woman get jiggy in her shower? [And now with the wave of my magic wand I absolve you of that image forever.] Small accomplishment you may think, but a totally huge if not ridiculous one if you ask follicularly challenged me.  While I would welcome more of these knots, more often than I would like, I find I have a different kind of knot inside my head or stomach.

This week was marker-checking week.  It is the routine, imperfect, but best we have measure of whether my cancer is causing trouble.  There is no reason to worry [HA!  I told you before, I am not afraid of anything other than the itty bitty matter that cancer could return and I don’t know – KILL ME.] thus no reason to panic, or drive everyone around me back toward Crazyville when we are so close to the exit sign.  Oh but worry I did.  Thankfully, the knots were for not.  My markers are fine because I am fine.  I am starting to work up my courage to embrace regular use of the other “C” word (one very deserving of CAPITAL status) –

CURED!

This whole body and mind empowering status does not, however, mean I am knot free.  I read about a new breakthrough study and phase I drug trial for her2/neu cancers.  Great news.  Potentially really great news!  Only my science minded, information loving brain and eyes spun rapidly toward the back of my head as a wave of nausea swept over me following the introductory sentence that read, “blah blah blah for one of the most aggressive and deadliest forms of breast cancer blah blah blah.” Wait a damn second, that is the kind of cancer I had.  Sigh.  I mean for g-d’s sake, if I had to get cancer, could it not have been one of these lazy hilariously so-called “non-threatening” kinds?  It turns out that my oncologist (should not come as a surprise, that woman has her kick ass hand in everything breast cancer cure and treatment that exists in the WORLD, one of the innumerable reasons I dig her so) is involved in the trial.  When I asked [rather straight faced for a person at month 11, week 2 of a year long chemo course] if I should take this new wonder drug described as a “smart bomb” of the her2/neu mutation (a monoclonal antibody like Herceptin that when given in conjunction with Herceptin attaches to the chemo itself, is surprisingly well tolerated, and is producing amazing results by the way) while I still have my handy dandy port in my chest, she said no way.  Don’t need it.  As she is rather serious and conservative, I enjoyed a rather deep breath.  Combed through another one…on the silky coat tails of my Cure.

This blog was never intended to be a scorecard of thanks or gratitude, for surely if it were, I would never say anything of general interest, not that I ever do… [and not that my understanding or appreciation is insignificant and certainly not because what my family and friends have done or sacrificed is nothing either – CLEARLY [I think], those details are EVERYTHING].  Rather it would be one giant sappy nonstop yelling from the rooftops whimpering emotional thank you to everyone who has touched our lives so deeply, so selflessly, so willingly throughout.  Again and again and again.

And it may be that this ongoing dialogue I have with myself in front of you is selfish, though it evolved in a more altruistic way (I hope).  It is true that some of my posts have a person or thing in mind, but generally it is just me blabbing about, well…me, and an honest (hopefully helpful) account about my emotional and tumultuous ride on the cancer freeway.  I have a lot of thoughts and feelings that for whatever reason at the moment I process them do not seem best suited for a public forum.  And because, on occasion, I do write about a given person or topic that day certainly does not mean I feel something different or less appreciative for another person, it just means at that moment, that is what I wrote.

Other thoughts and opinions are expressed as carefully and subtly as I know how [like, have you demanded your annual screening mammo and ultrasound or MRI if appropriate and ignored all buffoons and quacks (or evil empires masked as insurance companies and politicians arguing about dollars over sense) suggesting you do not need one or have to pay out of pocket for one?  Or any verbage regarding the single greatest emotional conflict, fear, and yes, hope of any young woman with cancer – that she might not make it and that her husband will love as deeply again and that while the memories of her fade away the reality of another wearing my best most prized wife and mommy shoes.  That was subtle, right?].

I understand the inherent risk that my clumsy attempts leave the door open to misinterpretation by someone else.  That is unfortunate.  Sad.  Makes me question whether writing publicly is a good idea after all.  Recently my words hurt one of, if not the, most important person in the world to me.  To be specific, I suppose it was my lack of words that given day and a complete misunderstanding of the words I did write but those details matter less.  The important part was that someone I love so dearly was hurting.  KNOTS.  BIG ONES.  I have to defend myself and say, that objectively I did not do anything wrong, say anything wrong or not nice.   A wise friend reminded me that the bottom line is that our perspective, and our emotions, are our reality, even if misguided.  Translation?  Her hurt was real and valid even if equal to my innocence in the situation.   Human relationships are very curly and complex.  And they get knots.

So, here is my lesson learned.  Listen well.  I understand the suffering that is being a cancer patient.  I understand every ugly detail of my situation.  The next closest people to me understands a lot but it is not the same.  And I understand the burden of carrying a cancer load day in and day out while also tending to the fragile emotions of those around you.  But I also understand the burden of watching someone suffer with cancer when there isn’t a darn thing you can do to fix it.  The age old conundrum of wanting to fix yourself and everyone who you adores is tricky stuff.

I do know this: We are all responsible for relaxing the curls in our relationships.  So, even if your most profound, most important, and loudest thoughts and thanks are to the people closest to you -do not assume they were heard.  Even if your efforts include tireless attempts to express your love, admiration, appreciation, faith, and gratitude privately and publicly – do it again.  Where their need may seem insatiable, it cuts to the core of the suffering of those closest to you, and this is a truism –  nurturing them through this process is as important as your survival.

Anyone have a straightener they recommend?  Keratin for life?  Something cooler less stigmatizing than those controlled substance cocktails ending in “am” (ie, Lorazpam, Escitalopram, or Alprazolam)?  Let’s face it, anxiety-ridden is the new normal, right?  Find me a person without it and I maintain that they either a) live in a bubble, b) don’t have relationships with other human beings (ie, Cody dog.  He just loves me and likes me and is happy without any condition or disappointment.  On the rare occasion that he is angry with me, he poops on the carpet.  While I am no fan of such antics, I hold out the very real possibility that if we all just “pooped on the carpet” in stating our displeasure we could leave the problem behind with the kick of our paw and wag of tail and then move on to be better ritual of loving and play.),  c) are living under a lovely rock having no idea of the cancer [or pick any other life problem] meteor shower out there threatening to hit them, or d) and perhaps most likely, are medicated, drunk, or both.

I do not like my curls and I do not like when I have knots.  I reserve judgment on the possibility that the cause is this green juice I just made promising myself, despite (or perhaps to spite) myself, that it tastes great instead of it just making my stomach ache while nourishing my cells.  I do, however, accept responsibility that I am part of the cause of these knots.  The good news is that, that means I can be part of solution.

Perhaps the answer is to embrace the knots with all of the other necessary thorns of life.  I mean thank goodness there is the proverbial knot I tied a year ago when this insanity began.  As I do not ever plan to let my guard down, this knot doesn’t get loosened and thus must become my friend.  With future knots related to my health status and checks that are now a routine part of my life, I have the power (to at least try) to control the fear, embrace the Cure, and trust that my past actions will lead me safely into my future.  And where our best, most cherished relationships are concerned, knots are OK too, so long as we love each other enough to work them out.  They keep us balanced and aware.  And they leave room for growth, resolution, and repair.  No matter what is going on in our lives, we must not take the most important things for granted or get lazy in their care.  But if we do (being human and all) it is most important that we own up to our contributions and tend to those emotions gently, if not, the knots get out of control and you will always be bald.  My heart goes out to all of you who are brave and determined enough to fight for the relationships that matter.  I am behind you – and with you – in that struggle and very much routing for, and believing in, your future.

I am thoroughly enjoying my summer of healing in the mountains and all of my new growth, even the knots – I hope you are too.

Much love,

jodi alison