No Purpose Flowers & The Great Loves of My Life!

I wonder, how many people in the world have a true understanding of what it means to possess infallible inner strength. And no, I do not mean the population who purports [over my loud cries of bullshit] to never know fear, anxiety, or sadness – you know those who skip through life’s hard knocks all la di da “I live in the moment, and do not question or ask for more.” Rather, I mean the old and wise souls who just “get it” and “do it” relishing in the good and taking on adversity and challenge with honesty, integrity, class, and always dominant steely resolve.

I am sorry to say, yet another friend from my “inner circle” has been diagnosed with breast cancer.  If you are keeping score, that is too damn many.

A very hard one for me personally.  Looking at her, is looking in the mirror.  Her family, her husband, their baby sons, our professional and personal relationship.  It hits too close to home.  It angers me that we have not solved this breast cancer problem.  It crushes me that another family [let alone one that I adore] has to go through this ordeal.   I am sure I should be tougher [though thankfully not complacent] by now, but her tragedy is a renewed punch deep in my gut.  There is the part of me that refuses to “live in the pink,” and wants to ban the word cancer while erasing the entire experience from my mind forever [then again, that might put the makers of Ativan out of business, and I am all for economic recovery not to mention my own sleep filled nights].  Though the better part of me, driven by my inner strength, understands that this post-cancer experience is also part of my journey.  If I can help another woman with my words, my experience, my [increasingly strong] shoulder, my love, or my knowledge than I can not, I will not, turn away.  While I wish for cancer to be limited to being a detail of my past, it is not.  It is a detail of my life and I am beginning to understand that, that is OK. It is part of my journey – my burden and I shudder to admit, now my joy – to be lucky enough to give comfort to someone else.

Indulge me if you will.  I write today from 37,000 feet in the air en route to a week long ski trip with my family and dear friends.  I feel the too familiar tears sting my eyes as I write, but these are happy and content tears.  I reflect on the many years we have made this trip.  And in the past year how far I have come. Last year I was just sprouting my first new hairs after completing the harshest part of my treatment and this year I confidently sport a [small but mighty] ponytail.  I feel great and am doing great.  I am strong, I am blessed, I am back to living my life…my way.  But my friend is having a port inserted today so she can begin the life saving chemo she needs while her precious husband sits lovingly and so uneasily in the waiting room and their young sons have a regular day not realizing that a monster has invaded their lives.  Please do not misunderstand, like my mine, thank g-d, her journey will be harder than words can do justice, but she will do it with grace and survive.  Her prognosis excellent and her cure already in process.  I just wish she did not have to go through it.  I am lucky enough that she allowed me to read a letter she penned.  I am now entrusting all of you with it.

These are the gut wrenching words of a wise and soulful person who possesses that rare and beautiful inner strength.  The words of a new warrior fighting for her future.  They are honest even if raw, they are real, and they typify the remarkable woman she is.  The kind of woman who will beat the monster like those of us who crawled this path before her.  THESE are Rachel’s words.

“Dear Family,

I am writing to you today to give you some serious and personal news. 

I found a lump in my right breast two weeks ago Saturday.  After a visit to my OB’s office, I was sent to the Women’s Diagnostic center for an ultrasound.  A week later, I had a breast biopsy followed by a mammogram.  This past Friday, I was told that my biopsy revealed that I have breast cancer.

The good news is that the tumor is on the smaller side, giving me an initial diagnosis of stage 2 cancer. This is very beatable! Every doctor I have visited is confident that in 6 months from now, I will be healthy, happy, and cancer free.

While I would not say that I am blessed to have breast cancer, as a person who has breast cancer I can say I am blessed to be part of the Temple Beth Am community.  While I have only known for 5 days, in that time, I have been completely taken care of.  I will not share names as I have not asked permission, but my oncologist, a congregant, has literally done everything he can to move things along as fast and as wisely as possible.  Two recent breast cancer survivors have taken me under their wings and been there for me at my doctors’ appointments to explain to me what everything means.  From sharing their stories, to buying pastries for the nurses on behalf – I am so grateful.  The clergy and staff here have been so amazing and supportive.  The board has assured me that my health comes first and I truly feel support from all directions.

As long as I feel healthy, I will be starting chemo on Tuesday.  I will continue treatment for up to six months.  At that time I will have surgery and will get my clean bill of health.

Everything has happened very fast.  I still have not found the time to tell my closest and oldest friends so please do not be offended that I did not contact you personally.  That being said, I have always had a lot on my plate with being a wife, mother, daughter, friend, Rabbi, and Jewish Life Coordinator.  This takes priority right now.  I hope to still fill all of these roles, but there are going to be times when I cannot.  I apologize in advance.

I know a lot of you are going to want to reach out to me. I feel your love and support already. It’s hard for me to accept help, but I am doing it.  I know this congregation, and know that it is full of smart, loving, wonderful people who do and will take good care of me. Right now, I am having trouble finding the time to do any of my normal functions.  I can only imagine how much harder it will be once chemo starts.  So, please know that your calls and emails are very appreciated, but that I cannot respond to them all. The best way to support me and my family right now is to pray for my health.  (My Hebrew name is Rachel Gittle bat Yoheved.)

Also, I am a mushy person.  I love hugs and kisses, however, I need to avoid being sick while on chemo.  For right now, my doctors have told me no hugs and kisses, lots of washing of the hands, etc.

Passover starts on Monday.  We are all supposed to see ourselves as if we were slaves in Egypt – Mitzrayim.  Mitzrayim can be a metaphor – it means narrow place.  That’s where I am right now.

My doctor is my Moses, ready to send plagues galore that will hurt this Pharaoh of a tumor who thinks he can limit me, hurt me, destroy me.  Unfortunately, the plagues hurt, not only Pharaoh, but all of Egypt: the people, land, and environment.  Chemo will hurt the good cells too.  I will get weaker, I will feel pretty bad at times, I will lose my hair and suffer side effects – but I will survive. Not only do I have Moses, I have Aaron – people who are serving as my mouthpiece, who know what questions to ask, what to say, who can explain to me and others what is going on, who are physically leading me along the way.

Passover is the story of the Jewish people.  Passover is my story.

I am excited to start the journey to my liberation.

Thank you for your love and prayers.  Hag Sameach.

Sincerely,

Rabbi Rachel Greengrass”

Today I am grateful for my inner strength, and especially grateful for my three boys who sustain me.  I hope that Rachel similarly sees my reflection in the mirror and knows with certainty that she too can do this and will be OK.

I, in equal parts, want to protect her like a younger sister, support her out of respect for our professional work together, and guide her as she has me for so long as my Rabbi.  Rachel, your words and wisdom are as beautiful as you, thank you for being willing to share them with us.

My friend, you may be in a frightened and narrow place, but your plight to freedom and the width of your brilliant future will be lined with the same protection, respect, and wisdom you so selflessly gift to others every day.  Lined with your adoring family.  Lined by your friends who will stand with you no matter what.  That is a lot of good to take with you on your journey…but most importantly, your liberation will come because of your amazing inner strength.

Much love,

jodi alison

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

The Olympics are here!  I am so excited, I am one of those dorks that count the days, waits, and watches every night (while glued to my uber smart phone updates during the day) no matter what time zone the games are occurring in.  I love to read their stories and admire their passionate dedication and of course then has to hide my head under the pillow or change the channel at the pinnacle moment (true sports fan that I am, you should see me at the kids’ games…) because I can not stand to see them fail, come up short, or be disappointed after their intense lifetime efforts.

And speaking of lifetime training to designed for the ultimate test of endurance, last week I received my last Herceptin treatment.  If you do not mind indulging me, I am going to say that a few (many) more times, because I can!  Last week I received my last Herceptin treatment.  Last week I received my last Herceptin treatment.  Last week we received our last cancer treatment. Fifteen unimaginably excruciating months of surgeries, chemo, and drugs.  Last week I received my last cancer treatment.  I think I can, I think I can, I thought I could, I knew I might, I actually did it (note to reader, please feel free to ignore below paragraphs laced with my doubts, while honest, I much prefer this party line)!  My last treatment course was aptly received in the comfort of my most beloved mountain town setting with my G-d mother with me (and my mother, sister, husband, and mother in law in my heart after one of them attended every other treatment with me) and with a lot less fan fare than when my chemo began.  WE did it, last week I received my cancer treatment.  I could share a million words over the course of eternity and never convey what this milestone feels like.  I do know that to minimally scratch the surface, I feel, elation, joy, satisfaction, gratitude, hope, faith, fear, sadness, confusion, angst, pride, and a great deal of peace.

I will let you in on a secret, when this started, despite my go get ‘em mantra, deep down I worried at times that I might not make it through the trials. Make it through to the Opening Ceremonies (of the rest of my life), make it to this point (of optimism), make it still standing (tall’ish), make it at all…

To be blunt – my experience was cancer killed.  Killed my father, killed my uncle, killed countless people I love, whose lives I value and respect.  Period.  Many have foolishly said to me in the last 15 months, “don’t worry, you are so lucky, it’s only breast cancer, everyone survives, but LET ME TELL YOU, I know, first hand – that is a crock of runny poo.  And others, they have beat the beast and lived long enough to regain confidence in their future only to discover the monster was there hiding inside all along until it was too late.  Getting to this glorious day is in a word, miraculous.  Leaving behind the coach and teammates that afforded me my miracle and walking the beam alone is downright unnerving.

My intention is not to be depressing but rather real, on the precipice of the gorgeous inspiring pageantry and glory of the (my) Games, I feel compelled to point out that for every gold medal winner, someone falls, takes one itty bitty step, or is one-gazillionth of a second slower despite their training and preparation.  For every winner, someone loses.  Today is my victory, but I walk to the podium with the weight of all those who fell short hugging my shoulders.  They fell short just because life happened and not due to any fault of their own.  Whether it was a bad spin of the genetic wheel or not enough research leading to enough affordable solutions or whatever, there are motherless daughters and sons, widowed spouses, suffering parents and siblings, and lost friends.  My heart remains aware in its celebration knowing that as I survive and bear witness, it becomes my responsibility to fight for better, more humane treatment and an end to cancer for all, including those who never get to “end” their treatment after being cured or even those yet to be inflicted or diagnosed but who are exposed every second of their lives.

Today we are together, safe, and filled with health, happiness, and peace.  And I mean really totally incredibly happy – for the first time in too long a time.  I am writing tonight from deep in the backcountry where we are camping (STOP laughing immediately…beotches, I am the original mountain girl [not to mention one hell of a good sport who also happens to be the mommy to 2 boys] not with standing the poison oak covering my face [it goes extremely well with my awful hair-do in case you were wondering, but after what I’ve been through it doesn’t seem like that big a deal, except maybe to my husband who might have had exotic romantic thoughts in the wild and has to look at me]).  Is it still “backcountry” if you can see where you parked, drive an urban tank suitable for sleeping if necessary with your 10-pound “mountain dog,” and are typing away on your MacBook Pro in said wilderness?  Actually, joking aside, we have set up quite a camp in the exquisite Pisgah National Forest off the Blue Ridge Parkway.

The boys are chowing on man-food after we cooked a fairly impressive gourmet meal and I am observing my family with a renewed happiness.  I am embarrassed to admit that at the moment I realized that the foreign feelings I was experiencing were complete peace and joy I barely recognized them.  It is so totally fantastic to feel, well, to feel like me again.

I have true pride and complete comfort in the choices our family made.  Where those treatment decisions seemed impossible at the moments made and the eternity their repercussions were endured, time has been kind and more or less gentle with us and as was our hope, we have absolutely no regrets.  We did not send the boys to camp this year even where their friends went in droves, instead opting to keep them under wing.  This too was a big deal as some of the best memories of my life were at camp (Akiba) and I long for my sons to have an experience like mine.  But observing them in this setting tonight, I am bursting with relief at the possibility that we adequately, even if imperfectly, exposed them to the truth but still protected them from the horror that is cancer and being a four or nine year old boy whose mommy has cancer.  That our wish came true and that they will look back and in equal parts be proud of their parents’ actions and conduct while actually remembering only generalized bits of what they have been through.  To our biased eyes, the boys seem strong and remarkable and thriving.

That’s it.  There is much more to be said, but better I should go prepare the s’mores that need to be cooked at the fire.  Bring on the opening ceremony of our next chapter.  We are prepared, eager, and ready.  Three weeks until surgery and the very last step (I pray) in this phase of my journey.  I hope to luxuriously make my victory lap last for the next 40 or so years.  After 15 excruciating months, I am honestly going to sleep (and perhaps can even learn to actually sleep again) with real hopes and dreams of my future.  But I will not forget my past and I will advocate and continue training for a better, healthier, and cancer free future for us all – you have my word – always going for the gold.

Much love,

jodi alison

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

I am an ordinary girl, living an ordinary life.  Don’t read anything bad into that, there is (hardly) anything bad about my life.

At least it was ordinary until the day I was diagnosed with cancer.  At that moment, my life became extraordinary.  And with it a deluge of every raw, negative, warped, scared, and awful emotion there is.  Let’s face it, I was a worrier before [just the typical things like flesh eating bacterial infections, air travel, terrorism, world peace, ya know – the little things all moms worry about, right?]

But cancer changes your entire experiential compass. Rather extraordinary.

WHOA! What is it that the great Willy Wonka said,  “wait a minute.  Strike that.  Reverse…”  I think, maybe, it is the exact opposite. For forty years, I lived an extraordinary life.  At that moment of diagnosis, somehow, my life – very much against my fierce free will – became ordinary and taken out of my control[freak] hands.

Fear, anger, anxiety…suffering, are all very real.  Valid.  Appropriate even.  But ordinary.

It was one year ago, that my odyssey began.  A routine test that was anything but. A barely visible speck on a screen that was supposedly “nothing” but that wasn’t there a year ago (Have you exercised your right to a routine mammogram recently?  Consider this is your monthly nudge!).  I walked into a hospital broken but whole and I walked out a perfectly, beautifully even, rebuilt but internally mutilated mess.

Imagine, if you can, in the span of 24 days, I celebrated my 40th birthday, my 10th Anniversary, was celebrating Mother’s Day, and was diagnosed with cancer.  The one thing I was most scared of in the world was suddenly (AGAIN) front and center taunting me, violating me, and threatening my future. Yet, somehow, and I mean I literally have no earthly idea of how, a whole year has passed.  Each day and long night, whether I slept or more often paced my house like a greyhound, the sun continued to rise with shocking color and just like that next occurred.  Time is extraordinary.

Mother’s Day, one year ago, all I could think of was the excruciating notion of who will be mommy to my babies when I am no longer alive.  I assumed, notwithstanding what the doctors said, that I would suffer the same fate as my father and my boys would live without me.  A therapist called this “awfulizing.”  Whatever I may have “ized,” I called it just plain awful.   The only way my children can thrive in this world and develop to their true potential is with Jason and me as their personal guides and protectors, right?  Of course, I know this is not correct, but I want their every need and desire to be fulfilled, my way.  I want to be their only mommy, at least until such time that I consider maybe sharing them with a girl and her mom.   Bottom line, is that I need them, and they need me.  We are meant to be together, I believe it, thus it has to be true.  I just do not know any other way to say it.  Incredibly, it is Mother’s Day again, and I am still here, I am their mommy.  Raising and unconditionally loving them [despite the fact that one of them is currently screaming and carrying on (including some fine Jodi-esque eye rolling and mumbling under his breath over not wanting to do homework and the other has ice on his face after he got punched in the eye at school by one of his best friends because he  (including some fine Jason-eque flirting) paid more attention to the pixie on the playground]…being a family is extraordinary.

I meet an older couple recently while I was getting Herceptin and she was starting chemo for the first time.  Her husband was going downstairs to get tea for them with his walker.  She seemed so sad and scared and I was alone that day, so I broke my rule of not talking cancer in the chemo room and tried to help.  She told me about the many decades they had been married, their children, grandchildren, and even great grandchildren.  I cried, but she glowed. She was not young…yet her comment was that they wanted to grow old together. That is my mantra.  I say it no fewer than a million times a day.  I want to grow old with Jason. He is the great love of my live and I refuse to be taken from him. True Love is extraordinary.

Last week I was honored at the Baptist Sip and Saute.  Standing before a ballroom of people cheering for my so-called accomplishments was utterly overwhelming.  The Baptist professionals are the remarkable ones.  The one who saw that faint speck on the screen that would have killed me, the ones who brilliantly operated saving my life and…my appearance while becoming my friends.  The one who guides my ongoing care with a knowledge and expertise that I marvel at daily. On what would become the second worst day of my life, I also laughed, while a care coach held my hand as we processed those first biopsies and results.  I put the doctors and staff in the Baptist health care system up against any in the world.

At the event, they (much to my disbelief and discomfort) sang my praises in honoring me on my cancer journey.  The real honor, however, is how they encounter “little girls” like me every day and turn us into survivors.  I thoroughly enjoyed my very emotional evening flanked by two full tables of my incredible family and friends and even more so enjoyed spending time with most of my dream team ladies who I adore outside of the office!  Drs. Giron, Martinez, Marshall, Wang, and my Care Coach Loretta have championed my survival as I hoped they would when I chose them.  These are doctors and professionals in a brutal field where they deal in death and grim outcomes daily.  Yet, they never lose sight of the person inside the body they seek to heal.  It is a gift and a hardship for them I’m sure. Honor and respect are extraordinary.

I continue to speak my voice while trying to balance my family’s privacy and my own desire for the world to understand what having cancer means [if more people did, we multiply our disease fighting budget and slash our war wasting or campaign bullshitting dollars]. The real, even if painful truth, is something I am always seeking.  I know it is important to share, for me, for my family, and for a whole lot of others out there in cyber world, even if very hard and often uncomfortable.  I have tried to be as honest as possible (hold on to your seats, my “Fifty Shades of [c]ancer” is coming soon to a blog near you, hopefully co-written by guest blogger and bestie Lisa Lou).  Honesty is extraordinary.

I want you to know, I no longer cry every time I look in the mirror or see my reflection (it is more of a frustrated and pathetic but accepting sigh now).  Well, actually, sometimes I still whimper or gasp but it is a happy and relieved gasp because seeing myself is proof that I am still here and not otherwise imagining my survival. The chemo pounds are about gone and my hair really is growing ringlet by frizzy ringlet.  When I look at this picture, I know it is all Jodi, though even then that hair was totally outrageous.  I am beginning to see that girl emerge again.  I am also learning to say thank you without further commentary or smirking when you see me and “tell me” I look all fab.  I am learning that you do not necessarily see big green eyes, or a lack of luscious locks, my new very pretty titty’s, my wrinkles, or even my pear shaped tush.  You do (I now think) see the girl that loves you and wants so much to live and do good in this world.  And you care enough to try and make me feel good. I appreciate, now, that you (maybe) see the whole of me. When I think of it that way, I no longer wish to pop you in the face for your compliment.  Though I will tell you, I wish I knew people in the fashion industry.  Thirteen year old pre-pubescent waifs strutting down the catwalks.   Next October, I want to see InStyle showcase the real young women who faithfully chow on what they dish month after month.  Instead of us drowning in a sea of pink ribbons, I want see women, like me, who survived showing off their rebuilt  and perfectly imperfect very real bodies and souls with pride on the cover [ok fine, a little air brushing would not hurt].   Beauty is extraordinary.

Today is a big [read HUGE] milestone.  One year since I was officially deemed cancer free. And while the year was filled, and continues to be filled with aggressive though preventative and precautionary treatment, officially I am cancer free.  I marked the occassion with a weekend on the Riviera Maya with a friend.  Aside from being peaceful and beautiful, it was fun! Watching the wind churn the ocean with a friend who was nothing less than a life line this year, I had no doubts of my luck and my blessings.  My friends have endured a lot this year, sacrificed at lot, put up with a lot this year, and stuck around to see my through my ordeal.  Friendship is extraordinary.

We came to play and so we did.  Between Carlos who called us “las senoritas bonita” all weekend long and brought us fresh margarita’s without asking whenever he walked by to our “education” at the neighboring swingers colony [focus Jodi, “Fifty Shades” is next time].  We never opened our books or computers.  We just talked and giggled and giggled and giggled and listened to the silence.  Effortless laughter is extraordinary.

For those of you keeping track, August 3 is my last dose of Herceptin, August 13 my final surgery and at long last the port will be taken out of my chest closing this book, I pray, on cancer forever.  I accept that cancer, the fact of cancer, will always be part of my life, and thus my story, but this part of the story please g-d, will end.  I do believe in my survival.

Hope and survival are extraordinary.

[c]ancer is one shitty bitch!  Take this cancer, I have been free from the worst part of your silent and menacing growth and tyranny for one year today. I warned you, I am a lover AND a fighter and, I. Don’t. Ever. Give. Up!

So, while I may be just an ordinary girl doing ordinary things, I know life is extraordinary.

My life.

Much love,

jodi alison

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.

Well here we are again…another eve of another surgery.  A double header no less.  My reconstruction is upon us.  Wohoo!  I am finally feeling better physically so I am dreading feeling crummy again.  It must sound strange but it takes a lot of energy to psyche yourself up take on major surgery with a smile.  That said, Diedre is a gift and lovely artist so I am genuinely elated to not only have reached this milestone in fine form, but excited knowing how well she will reconstruct my body and thus perhaps my mind.  As many of you know, I also decided to proceed with a total hysterectomy.  Sigh.  This piece is a little harder to digest.  I respect that this decision isn’t for everyone, but it is right for me.  HARD but right.  I know I am in good hands with Nick.  And Michael, well, everything is better with Michael in charge.

I’m ready, prepared, able, willing.  I put my life, again, in the care of my dream time.  Michael, Diedre, and Nick – go get em’!

But first I had to survive another pre-op appointment.  And with it another round of questions by well meaning but utterly clueless persons.  Why are you having this surgery (If I had $100 for every person who has asked)? The only reason my eyes didn’t project fire laced daggers directly at her head is because my super power flames were too quickly soaked by my familiar tears.  I am reconstructing my breasts, because I had them chopped off after they and their co-conspirator cancer tried to kill me.  I’m giving up my uterus, ovaries, appendix, and related parts so that they don’t get the opportunity to interrupt my future with any menacing of their own.  Any other questions?

What do you know?  The view can’t possibly be good enough from your cheap seats to question me, can it?  And this poor girl isn’t the first, so many people have questioned, however, softly.

Do you have any idea how hard this is for me?  I’m a baby (or at least I was until I turned 40) who never gave up hope of having more babies (or at least I did until I turned 40 and got cancer). I am all girl (or at least I was until I had to start giving away my lady parts one by one right after I turned 40).  I’m actually not joking here.  I just spent ten years trying to have children.  Making this “choice” is a bullet to a very tender place in my heart.  But somehow, inexplicably, I found the courage to do not what I want but what I need to do.  To protect myself and more importantly – to protect my boys.

You don’t have to understand, in fact, you should consider yourself extraordinarily blessed if you don’t.  But please be gentle with me, I’m hurting.  We joke in our house a fair amount, that there is no crying in baseball (or football…my preferred sport).  But this isn’t baseball, this is cancer.  The universes ultimate game of mindfuck.  I have chosen to stay on the offense, to control what I CAN control since there is already too much I can’t.  But tears and raw emotion are an honest part of the landscape right now.

So annoying hospital administration lady with the 5,000 stupid questions, YES!, you have my consent… to make me less susceptible, better, healthier, stronger.  I consent to more major surgery because I consent to living another 45 years.  Do I really have a choice?

I plan to enter the hospital with a public debut of my chia pet’esque fur and I will stand tall doing it.  I plan to leave the hospital free and whole.

There are so many words swirling in my head tonight but the anxiety has gotten the better of me, so I will keep this post short.  I have a life and a job that matters, and most importantly – a family and friends that mean EVERYTHING…to get back to.  I am done with cancer. It has to be time to move on.

I consent.  Show me where to sign.

Much love,

jodi

Message in a bottle.  I write tonight with a rare (these days) peace.  Last night I slept four unmedicated hours and today I went an equal four consecutive hours before the familiar cancer panic bile rose in my throat following a sail in St. John’s Bay on a small sailboat and the consumption of a yummy drink known as a “pain killer.”  And since alcohol I something I barely consume these days, a very carefree, fun, and certainly “pain free” indeed, Jodi emerged.  Think of it as my standing on the edge of the Titanic sans the whole iceberg bit moment  with a fabulous playlist blaring in my ears, six foot rolling seas, and a lot of West Indies wind in my face.

Yes, forgive me father for I have sinned. I confess, (I know several colleagues are faithful readers), I am writing from one of earth’s great white pigs.  But I must tell you… what a pretty pig she is! Don’t fret, I toured the engine room – it is immaculate and the oil record book complete. And my beloved compliance program seemingly in full force and effect and taken very seriously by all the crew I “tested.”  The poor chief engineer may never recover from our little chat but…just kidding.  Sort of.

These past days have been a terrific a chance for a  husband and wife (not Jason and Jodi and certainly not caretaker and sick) to let loose, have fun, and connect. My beautiful long haired boy who I loved first.  But you have certainly made up for it, having swept me away every moment that counted since, haven’t you?  For the first time in a long time I saw reminders of my “normal” past and thus glimpses of a “normal” future.  I can’t describe how good that felt.  Gentle winds and a spectacular voyage we have had, no?  You are my sweetest joy.

Message in a bottle.  If I speak, will my message  wash up on some lovely shore and resonate with the intensity that it originates from inside my heart?

I had the great fortune to run into an old and very dear friend on the trip.  AUNT LOIS!!!  Beautiful, wonderful, kind, special Aunt Lois (and Harris too!).  We spent quite a bit of time together catching up and talking and I must tell you that she (no surprise) got right to the heart of it in no time and had me feeling better than I felt on several other much more expensive couches these past months. The Akiba magic spans my lifetime and it has not changed.  The friends I made as a child in the Poconos have rallied around me in such a meaningful way.  This is what they mean when they say…friends for life.  Thank you Aunt Lois for such powerful healing medicine! I am counting the days until we all get together in September.

And for the third time in the short time I have kept this blog, my thoughts tonight are captivated by the bilateral mastectomies for two of my dear friends.  Although for one, the surgery was prophylactic, it doesn’t make the experience any easier.   I am sending so much love and many hugs to her as she gets “revised” today.  And my Lou, well, I’m hoping with all my might that  her recovery is “easy,” after all – I know exactly what she is to endure, that she too is spared (the early news is awesome!) and for all three of us…conversation soon returns to anything but the abject horror faced by the dearest friends you could ever imagine.

My real message tonight is to my boys.  Although we are having a glorious time, I am missing them.  A message to my little boys whom I have had the chance to reflect on the impact of cancer on their lives. They are so young and magnificently innocent to have walked this road.  And I know, however well adjusted they are, they have endured much in the past eight months, the impact of which I may not ever understand.  These sweet souls who were entrusted to my care, who have shown maturity and spunk well beyond their years as they continued to thrive in school, be easy going and dear to their friends, understanding, and accepting at home.  Where I see my flaws in handling this crisis, they seem to just take it in stride.  They give me the love of a lifetime.  I just think they are individually and collectively the nicest little mensch’s in the world.  No mother could be more proud.

Message in a bottle.  Living beats cancer in a knockout.  I hate with everything I am that any of us has to endure this battle, but more than the fear, the pain, or the reality – I believe in us and believe that our brave course means we will one day, a long long time from now, smash the bottle on some beautiful unknown shore having left cancer permanently behind.

Much love,

jodi alison

I was reading some old blog entries and came across one that stopped me in my own tracks.  Although deeply personal, I’ve decided to share.  Here is that post from No Purpose Flowers dated December 31, 2009:

“A final word on this final day of the defining decade of my life to date. In a short ten years, I have known some of the greatest losses and joys and blessings of my life. It overwhelms me, more than a little…to think of the life and death cycles and experiences of the decade.

I celebrated the passing of the (my) carefree 1990’s and ushered in the year 2000 with silent prayer and obvious heartbreak amidst the other party goers on the balcony of a South Beach apartment.  The prayers? That my father might be spared, that my career goals would get back on track in DC, that I would be soon heading back to Colorado this time to stay, that I might have a home and family of my own. Not knowing what, if any, of those things were in my future, the photographer in me was resigned to take a mental picture of what I knew to be the last moments of calm before a truly awful storm.  I begged time to stop or at least slow, but I knew better.

Despite my offers and pleas to a g-d, whose existence I now questioned in earnest, less than 60 days later we buried my father, I gave up the job I fought so mightily for and with it gave up certain ambitions as I took on a different role at home, and aspects of my hard fought for independence, not to mention dreams of living elsewhere.
There could be no silver lining to those realities but you should not be misled. I was aware that my life was still rich and fundamentally good, no great.

Indeed, I was surprised, grateful, and overjoyed to receive the single greatest gift of my life that same year – Jason got down on one knee and I heard the words I waited for.  After four years of dating, Jason asked me to marry him. A relationship that pushes me, tests me, inspires me, forces me to work harder than I’ve ever worked and one that sustains my every breath and is my ultimate peace. Jason is bar none, my greatest joy and the greatest asset of my life.

Then, in consecutive years I experienced pregnancy and motherhood. Initially, obviously overjoyed, but admittedly naive to the extent of that miracle. The fight for and the realization of the dream to be a family is unparalleled in my life. The blessings that are my beautiful sons are beyond words or expressions of gratitude and joy. They are my ultimate miracles and the bring me happiness and contentment every minute of their lives. There is literally no corner of this earth I wouldn’t have gone to make them mine.

The ensuing years and burning desire for more children, well, what can be said beyond “it is what it is.” The torture and torment of infertility is a lonely and isolating place. And it has tested my sanity more than I thought anything could. Fitting that I so boldly declared this final year to be mine. How harshly the universe put me in my place. Abandoning dreams is hard work. Doing so while not losing sight of the miracles in your midst – even harder.

The thing of it is, it is all well and good to say “I choose” to be ok, “I choose” to make character-building, lesson-learning, zesty-move-on-lemonade: only in the dark, quiet, and most other points in the day – the truth is stronger, and I also “choose” to be brave enough to feel the reality instead of a coward hiding behind a lie. At least, for me, it is easy to cover but impossible to ignore. I get up each day and do my best to fight the good and necessary fights, to find beauty and joy as much as possible, to spend as many glorious moments with my greatest joys – the boys…all three of them, but I am undeniably changed from some of the decades loses. I carry a bit more sadness and a lot more anxiety. Maybe it is just a fact of “growing up.” I wish it weren’t. I wish that several bad headaches in row didn’t bring fears of cancer or not seeing the kids at the carpool gathering spot the moment I’m supposed to didn’t conjure terror-ous fears of an accident or worse.  Treatment, pregnancies, miscarriages.  Again and again and again.  Blech!

It is embarrassing really, how I drone on about something comparatively little. How lucky I am, both because despite the hurdles, I have achieved more of a family then I could ask for and because my struggles could be so much worse. But to be the best person I can be, don’t I have to be honest, to the world and perhaps more importantly to myself? If the answer is yes, then I have to be able to admit that this pain runs to the deepest part of my soul without worrying that the admission makes me less of a person, wife, or mother. That the admission doesn’t take away from the joy and blessings I know because of the family I do have.

Through it all I have known love, peace, friendship and family that define me. I’ve been inspired, I’ve grown, and (I think) I remain hopeful and not battered beyond repair. While there are obvious parts I’d have preferred to not endure, I accept that they are part of my story and journey and make me the person I am.

On balance, my life is beautiful and good. Better, perhaps than I have the right to ask for. Tonight’s silent prayer won’t be in such quiet as it was 10 years ago, rather it will be filled with voices of friends and our children running around our house, and the very loud but far too distant voices of persons I’ve lost along the way.

I wonder whether the so-called 20’s will again roar and I fear some of what lies ahead. I pray for the health and happiness of all. Once again, I will leave the camera on the table and instead take mental pictures of the relative perfection that stands before me now.”

Fast forward two years, I am grateful for a new year with renewed hope and faith in what the future holds. I hope my voice continues to be present, strong, and heard.

I remain unfathomably grateful for my blessings, including the biggest one of the past year – my survival.  2011 challenged me in every possible way but here I am…battered but certainly not beyond repair.  I hope the coming year is more gentle than the last and, as I always do, I hope that each of us enjoys health and happiness.  And I hope your all of the mental pictures taken tonight are the most powerful and sustaining yet – knowing how good we have it.

Much love and fabulous wishes for the new year,
jodi alison

This is a different type of blog entry for me.  Perhaps shots are in order before you read further cause I’m upset and climbing up on the ole soapbox!  So be warned and think carefully if you plan to disagree with me.  😉