No Purpose Flowers & The Great Loves of My Life!

It has been a good night. No, it has been a GREAT night. And I mean one of those holy-shit-did-that-really-happen-crazy-perfect nights, like the carefree raging ones that your imagination built your youth into being. Mo and Jo were in perfect sync and the hottest guy in town looked at me with a fiery intensity that made my toes curl and insides quiver and yearn. He maneuvered his way across the room, bought me a drink [or several] and after wild fun, thought provoking conversation [he is the smartest man I ever talked to], yummy flirtation, and belly laughter, he escorted me out the door never taking his desirous eyes off me.  I could feel the delicious vibe – my inner goddess begged for more.   Before heading out, I go to the bathroom noticing a few other heads turn my way. WOW just wow. People noticed me. I look in the mirror and think, OK, not so bad in my very short skirt and very high heels. Tonight!!!! Just then my inner goddess dared mock and doubt me, so tied that annoying bitch to her damn chaise in banishment. As we snuck away from the crowd and out toward the car I could hardly contain my sensual thoughts. As I slid my bare thighs onto the cold leather of his fancy convertible, with my long locks of hair flowing down my back and freely showing off their triumphant return in the blowing wind, I nearly cried at the intensity and perfectness of the moment.

We enter the house peeling off our clothes and my skin sings with electricity and anticipation as we cautiously walk, hand tenderly in hand, toward the Playroom. And there they are, the magic silver balls in front of a silky mound calling out to me. Pure excitement mixed with a tinge of fear about this unchartered territory. Not sure I can stand another moment without him taking me, I muster an iota of courage and reach for the mysterious balls more commonly found in fantasy than suburban Miami. As I step, pain shoots up my leg. Really??!! Wrong silver balls, these are the ones left behind from the custom bearings inside a complex-villain fighting-Lego galactic starship built by our sons while we were out to dinner. And the silky stuff my foot glided over, smack in the center of said Playroom? Another surprise, left by one of the dogs. Not where you thought I was going? OH RIGHT, it is because cancer is not a fucking romance novel people.

We know that breast cancer is being diagnosed earlier and more often in us “youngin’s” which sucks because our cancers are often the “most angry” but it is also great, because of early detection and rock solid, though typically brutal, treatment (when was your last mammogram?) – more of us may survive. SURVIVE!! And yes, survive long enough to venture back into the bedroom if not naked, at least in a nice cami. Do not panic family and colleagues, this is not my Fifty Shades moment about my egomaniacal prince as he may be, I will refrain from further description of our hot monkey – hanging from the chandeliers – sex.

Did you know that they send you to “cancer class” when you are first diagnosed? You learn a lot of glamorous things about what is to happen to you (if you are very very lucky) but they do not talk a lot about other very relevant things in your long-term future (again if you are very very lucky). I get this, at the time of diagnosis you are laser focused on putting one foot in front of the other and breathing long enough to not notice that you are counting sunsets and sunrises. But with that (blessed) long-term survival, are very real issues like looking in the mirror (and not crying) and, oh yay, surviving (please G-d for decades to come) and being intimate with your partner ever again, let alone with confidence or perhaps a riding crop! We need to do a better job of talking about these realities openly and validating the emotions so harshly felt by survivors and those the most deeply connected to them.

I know we all will be on line to see the domination and down right hotness of Christian and Anastasia this weekend, but be gentle with the women touched by cancer in your life whether they share your bed or any other aspect of your life.   Their egos and perceptions have taken a long-term hit beyond what they could ever describe – both for the complexity of those feelings and for their guilt that complaining about such silliness (such as the size of their ass, their ever thickening mid section, the lack of anything requiring the presence of hormones, their luscious garden turned desert, their scars, their fears of the future, their insecurities, their indelible and ugly memories of things that happened during treatment, their impatience and frustration to have any lingering reminder of cancer, the rawness of their insides, their crippling angst of being rejected by those they love most, and all on top of the regular pressures young women experience). Perhaps toughest of all we worry that these long-term recovery steps could somehow take away from our gratitude to be, thus far, one of the ones who made it.

The concept of survivorship is strong and awesome but it remains in its infancy. We represent a new class of survivor. Young vibrant woman, diagnosed early who have the luxury of future fret, and I do mean luxury. We plan to live into our 90’s and we have more than earned our right to bitch about the real world problems of our 30’s and 40’s. Our movie is an intricate one and the current soundtrack does not do it justice. And there is not a big marketplace for discussing these truths either – not in support groups, books, or blogs, rather, instead, you read and see only the perfect “what it is supposed to look and feel like” moments experienced by the Christian and Anastasia’s of the world. But these other things…also very real things… we do not talk about them enough. Instead we suffer in silence and shame, and thus, so too do our partners. But not today! Time will tell whether my voice matters, but if it does, with another wave of my magic wand, er whip – I validate how you feel cancer warriors. I will you the strength to acknowledge how you feel, to fight, and fight hard for those simple things felt (simple after fighting so mightily for your very life), enjoyed, and to not feel shame in doing so. I will talk about sex, and body image, relationships, and lingering reminders of your illness and scream as loud as I have to so people understand that survivorship matters and there are crucial elements of our post-cancer lives that have yet to be brought into the survivorship conversation.

I will be one who tells it like it is, this less glamorous side of survival. How today, I eat less, work out more, drink only things that are clear, green [and red or white], and gain pounds at a rate that even my smart scale at home scowls at me over. My doctor politely suggests, perhaps, it is just age. Whatevs – I don’t think so. And neither do any of the other women taking super cancer-please-don’t-come-back-drugs that I know (and that is a lot!). Every night before climbing into our glorious love nest, as I swallow my beloved little “blue pill” [Femara is actually a putrid yellow color], I thank the gods for its existence yet knowing that my biggest problem when I wake will not be the female version of an eight hour erection, but rather the slow painful journey to the bathroom while my badly aching joints wake up, as I wipe the indications of another restless night of sleep from my eyes, strip off my hot flash soaked mess of a shirt all before stepping on that punk of a scale, to say nothing of the trauma of brushing my hard fought for locks and seeing the clumps come out on the bathroom counter.

And let’s be real, while my particular Achilles heel is this whole cancer thing, what I am saying applies to all the over worked, under rested, insufficiently appreciated creatures of the universe we call women. Who amongst you works all day (in or out of the home), cooks dinner, does homework, sits through meetings, makes decisions, handles the repairs, the shopping, the bills, the logistics, shoulders the stress, the planning, and otherwise is the star conductor of the symphony that is your family and then goes into a “Playroom” to do anything other than clean or pass out.

If you are lucky enough to have such a person in your life, you should figure out a way to convince her, but not tell her after she’s baited you like an upstream swimming salmon, that she remains beautiful and sexy and desired. That she is worthy of your lust in addition to your love. That she is not less physically spectacular but rather possibly even more so for what she has endured even if the packaging has changed. Know that she is harder on herself than you could ever be so she hangs on your words and actions. Not because she is weak, desperate, or flawed, but because she is real, honest, and alive. And you cancer gals should tell your partner something too. I think it must be thank you for loving us, nurturing us, and making it work – when in truth, it surely cannot be easy. You should express your gratitude for their patience and respect of the process and for not ever giving up. You both need to talk, however uncomfortable, however hard, however awkward, and try and try again until those connections re-fire. Or maybe it is more basic, like lay down; there are things I really want to do to you and for you to do to me.

So piss off Christian, Gideon, and the others too. It turns out you do not know a thing about true passion and intimacy beyond your easy organism. Just so you know, I threw those silver balls back in the bin, cleaned the dog vomit, put on my go-to cami before climbing up the chandelier to do….well something with that incredibly hot man and it was not cleaning cobwebs. I did not bite my lip, get whipped, spanked, or tied. I did look into his eyes again and know that I was the luckiest girl in the world, despite… well in spite of all the “despites.” Every girl wants a little heat now and again, every guy – the same. But the ultimate staying power and OH MY GOD moments, lie fifty gazillion shades deeper. Get out there and speak your truth ladies. Speak in your bedrooms. Speak it at the coffee shop. Help new members of the club to realize their normalcy and be liberated by their truth. Now that is an OH MY GOD moment. And I want more of them.

I do plan to be there on opening night to watch the steaming hot tale, but I will go home with the love of my life, ever hopeful of the many shades of Jodi to cum.

much love,

jodi alison

February 28, 2015

Bad News:        This actually happened.

Good News:      It was a year ago tomorrow, I just never posted the story. So read and give Carrie a shout out, she has conquered and thrived – and never looked back.  Love you!

I have wanted to write this post for a long time but have not out of concern that someone would think I was talking about [to] them, out of concern [heaven forbid] that I would sound trite, and out of concern [awareness] that I am simply not a good enough writer to get it right.   But as I type today, I am in a cold and harsh waiting area at Duke hospital in Raleigh, NC, where our sister, Carrie [yes, that is 37-year old Carrie, the one who is an accomplished doctor, wife, and mother of our two and five-year old nieces], is having a – thank god – benign – but – big – ass – scary – golf ball sized…mother- fucking -brain -tumor (“MFT”) removed from her skull base. I’m guessing your reaction, like ours [once the shock and devastation subsided into a more manageable state of neurosis driven hysteria], is that the world has in-fact gone bat-shit crazy – there is no fathomable way our family has come up, AGAIN, on the wheel of misfortune so soon. But here we are, post tornado, with what feels like the weight of our house in ruins on top of our heads.

After receiving confirmation from the staff that the surgery was officially underway, and as I stared – terrified- into the bathroom mirror not sure of what to do next, what I saw were the faces of all the people who have accompanied me on my own terrifying journey staring back. And so we held hands and began the uncertain trip down the yellow brick road.

“Hearts will never be practical until they can be made unbreakable.” Sitting here looking at the image of what can only be described as knee buckling, breath stealing heartbreak in the faces of my family and thinking of the same scene playing out – in waiting rooms when I was a patient – again and again and again, I am struck by what an atrocious violation of the laws of nature this is. Parents are supposed to worry and live all of their children’s ups and downs, but parents are not supposed to sit in hospital waiting rooms with their baby’s lives hanging in the balance. It is upside down – and does not make any sense.

When bad things happen, the heart hurts first. And its ache unrelenting. Yet, if you are lucky enough to get this life right, then you know your heart has the super capacity to function despite the pain. And to mend. And keep going. I know that it is the extraordinary forceful beat and synchronized flow of the heart that powers us to endure the unthinkable. You collect every bit of love, passion, and hope offered to you and you just do it. One choked breath and beat at a time.

The heart may not be practical, but it is awesome, and I bet if the Tin Man were looking into the mirror, it would be his friend, the Scarecrow’s face that he would see staring back. Because the heart cannot sustain us alone. I think about the Scarecrow, how he desperately sought knowledge and a brain. I think about how Carrie left no stone unturned in consulting with the world’s finest doctors despite the [mental] pain of the reality she faced. Imagine being buried alive by your circumstances. It boils down to two choices, give up and fade away or throw every iota of your mind’s power into figuring a way out.

Within minutes of Carrie sharing the news, her “team” sprung into action. Within days, she was “connected” to every expert necessary to make a life-saving decision. She asked me early on, how she would ever know what to do, and I promised her that she would get there. I knew she would be able to make the right choices because I know the quality and depth of her mind. I knew that she would choose right for her life, because she “got it,” and she was not going to waste a second of the gift that is her life. And with deliberate grace, her frail “straw” turned into educated resolve.

Here is the trite part [sorry] of the story. Life is short. Do you hear me? Do you get it? You will say you do on both – I hope that is right. Because a truly smart person knows, today’s easy going bliss is tomorrow’s moment stealing your breath and peace or worse. Life is short. Shorter than you can ever appreciate. Do you hear me? Do you get it? Why am I always drilling the harshness of this reality? Because I want you to do more than say you understand. I want you to live the best life you can for as long as you can without waste or regret.

So long as you are blessed with this gift of life, you do not have an excuse. Do you not like your job? Change it. You are in a bad relationship, invest in it, nurture it, have faith in it, fix it, or dump it over the cliff. You do not find joy in your days? Do something else. Get help. Do not be a passive victim of your life! Too many of us are missing out on the best parts and do not realize it until it is too late. Do something, even one single thing, every single day that makes your life, and the lives of others, better. Let your heart help your brain navigate your course toward a fulfilling journey. This is not some weird call to be selfish, misguided, or irresponsible, but it is a warning. I imagine that regret is bitter. I know that well lived life is sweet.

Nor is this rant a lack of understanding on my part. Life is hard. Really really hard. Sometimes seemingly impossibly hard, but here is that truth thing again… Nothing is impossible, so long as your heart beats and your brain functions. Get up off your asses, and live your life with the passion and respect it deserves. We only get one chance…use it well. “It is such an uncomfortable feeling to know one is a fool.” Use your brain’s awesome power along with your heart’s capacity. If you do, when you look into the mirror you may surprise yourself by seeing flashes of a lion and learn you have more courage that you ever imagined.

Oh my sweet Carrie was so scared these past months. And the crippling part for me, was that I truly understood what she felt, which also means I knew there was little I could do to help her. She had to find her own courage. As I have said, no doubt way too many times now, [in my arguably irrelevant opinion] your life’s meaning – your legacy- is tied to living to the best of your potential, and in your presence having mattered to others. It is squarely on each of our shoulders to ensure our own happiness, and boy oh boy does that take courage. So whether for the hardships of regular days or the determination to endure the biggest crisis – trust what you are made of and with each small step build on the last and find your strength. I promise it is there.

This is your call to arms, make your life the very best it can be. Whatever excuse you think you have that is getting in your way – it is stupid crap. I apologize, I am NOT demeaning or suggesting illegitimacy of your fears or struggles. What I am saying is that like the cowardly lion, the heartless tin man, brainless scarecrow – the power was always inside of you. Life is dangerous. Live courageously every second anyway.

“We dare not harm this little girl,” “for she is protected by the Power of Good. . .” All’s well that ends well, though certainly not an easy journey. Carrie kicked the MFT to the curb. Safely at home, we are leaving those yellow bricks behind for a more polished marble of sorts. Cheers to a happy story, lessons learned, and always having our brains, heart, courage, and each other to LIVE.

Go get that future girl – we could all learn from your example.

Much love always,

jodi alison

My life’s BFF

Cancer is a cowardly thief. Yawn. You must be bored of my saying the same old thing. But it is true. I have reclaimed much of what that devil unabashedly stole, but a sound sleep still eludes me. I go to sleep fine, content, happy, and too often, I wake in the middle of the night in a putrid, horrible sweat having had a terrible dream. A recurrent dream. A dream where cancer returns and wages a war I am not strong enough to fight, or am strong enough – but get taken anyway. And please know, I don’t only dream about myself. So many nights, my dreams are about Lisa, Brooke, Rachel, Eileen, Jeri, Harriet, Jennie, Diane, my friends who have passed, their motherless babies, my sons and their future daughters, or the more than 230,000 women (and men too) who will learn of their diagnosis this year [sigh, yes, it is very busy inside my head]. One of my worst dreams stems from the reality that my baby sister has a significantly increased risk of getting the same awful disease. My sister is my best friend in this world. From the moment our parents brought her home and I claimed her as my own (literally that’s about what happened), we have shared a truly special, the most special, relationship.

And from the instant of my diagnosis, I have dreaded hers.

Let’s be clear, the fear was not unfounded or even abstract. Following years (years before I was even diagnosed) of being “on watch,” with alternating mammograms, ultrasounds, and MRIs, all designed to interpret the unintelligible content of her breasts, she endured biopsy after biopsy. Each result abnormal but, also, squarely in the grey area of what to do. Add a father lost to sarcoma, and a sister with the queen of nasty cell type breast cancers, Jennifer decided a more permanent and definitive course of action was warranted. I remember one day, while at my father’s bedside in the ICU while he struggled for every gut wrenching breath, Jennifer came upstairs from yet another breast biopsy. Her breasts sore and bound, she joined the vigil at our dad’s side. My thinking, that day, was, it can not be that my sister in her 20’s should have to face a cancer diagnosis after watching her father die of it.   But fast forward, she did that, and then watched her sister fight the very disease the doctors started warning her about her greatly increased risk in her TEENS.

Yet, a prophylactic double mastectomy is a draconian step by any standard. Several months ago when she first asked my opinion, the inner me screamed at the top of my lungs, D-U-H!, YES, YES, YES, DO IT. DO IT NOW. WHAT TOOK YOU SO LONG? But the slightly (and I mean slightly) more rational me, tried instead, to go through the pros and cons, to assist with understanding the divergent analysis of the many doctors consulted. At the end of the day, you cannot “book the action” for another adult human being, even when that person is your baby sister.

Oh how I love me some haters. Give me judgmental haters – and a real party gets going in my head. Haters, by virtual definition are D-U-M-B. They lack the intelligence, empathy, functional knowledge, and heaven forbid – actual experience to utter a word. But opine they do…. So…arguing with them though futile is occasionally fun to twist them into knots. You think it is easy to make this decision, decide to endure major surgery, to lop off your girlie parts? Every time I hear someone say how, oh well with close monitoring, they would catch a cancer early, I want to actually spit fire in their eyes. An early catch [while undeniably better than a late or missed catch] does not necessarily obviate the need for chemo, radiation, other surgery, or possible spread and death. Once the beast is unleashed in your body – it is a life long struggle. Disclaimer [I’m a lawyer by trade, I can’t help myself…]: I am not, in any way, shape, or form advocating or condoning surgery as a fix to risk or fear…every person, every patient is different, and this is a decision that is as personal as it gets. You have to consult doctors [surgeons, geneticists, plastic surgeons, psychologists, and more], you have to talk to your family, and the deepest part of yourself, and come to a decision that works for YOUR life. At root, these are decisions that you have to live with [or die by] – and in the end, we ALL deserve peace of mind in our choices, whatever they are.

I will leave the (soft) science and statistics to other wonks (who similarly don’t know what it is like to live with cancer or the very realistic fear of getting it). You want to know what strength and bravery look like? It is a perfectly healthy 37 year old woman with a body to rival any Victoria Secret model, without a documented cancer, who walks, head held high and confident (though trembling to her core) into a hospital when she does not “have to” [but really and truly does] and has her body sliced in half under general anesthesia with no guarantee of survival let alone a particular cosmetic outcome to be become better, healthier, physically stronger, and about a million steps ahead of cancer. Jennifer Karen Hirschfield Leff, you are my hero, YOU the picture of strength and bravery (and you don’t need a cookie in your mouth for that!).

My recurrent dream is ugly, crippling, and sad. It is of days that were so awful I could only work in 10-minute increments. It is of a road travelled for survival that makes a Stephen King novel look more like a romantic comedy. It is of love and heartbreaking loss and fears of what is literally unthinkable. Thank god, when I woke up today, it was after sweet dreams of our future and news that my sister’s prophylactic mastectomy went smoothly. Jennifer, for the next several decades, your sons and husband, and your parents, brothers, sisters, nephew-sons, and friends can have a better recurrent dream of this beautiful life.  Your life!

A recurrent dream! Good morning baby girl, you are a previvior.

much love,

jodi alison

Without question, my greatest joy in this life, is my family.

As a cancer survivor, I know the importance of forward thoughts and not dwelling on what happened or might be. But in truth, the harshness of emotion can be harder to control than the minds logic, and I find myself reflecting on, with knife-like precision, the realization that my cancer diagnosis impacted no one more than my then baby sons.

Ten days after Mother’s Day 2011, I faced the agonizing task of finding the words to explain cancer to my children. Worse, I faced – shaking to my core while talking to them – the possibility that they could grow up without me.

Next week will be three years since that awful chapter of my life began, and I have never been more “present” in their lives. Despite the ordeal, they continue to thrive in this wonderful life and with the benefit (yes, I said benefit) of empathy and understanding well beyond their years.

See the theme? My every thought, concern, aggressive treatment option was driven by my love of my family, of my children. Thus, it is not lost on me that in fact, the greatest victim of my cancer diagnosis, was not my children, but instead was MY mothers.

For every tear I saw, I know there were literally millions shed in private anguish by my mother and mother-in-law. Yet, as we mothers do, they put aside their lives, their fears, their other responsibilities and did nothing but focus on making me “OK.” Their every effort, as if they literally willed the cancer from my body and ushered in my hopes of a future. “Mom” is my favorite word (well, perhaps along with “life,” “love,” and “you are cancer free”), and I am so grateful for these two women in my life. I do believe it is the “moms” that are the ultimate unsung heroes in our global war against cancer.

As for my mothers daughter – she is doing great!

To all the mothers who wake up and go to sleep praying they will grow old with their family and to all the mothers who wake and go to sleep praying for the health of their [still in their minds] babies – I am wishing you peace, good health, and happiness every day, but especially on this Mother’s Day! And to my mothers, thank you – I love you with all my heart and soul.

Much love,

jodi alison

It is true that kids say the darndest things…and mine are no exception.  Well actually, it is also true that I think my children are exceptional in every way [except perhaps their propensity to talk back though that very well may be genetic or at a minimum karmic…and not something I can hold against them.]

I am not sure why Danny is thinking about heaven when we are so busy living, but on my daddy’s yartzheit, he sure has me thinking too.  His first question was, “how long do you go to heaven for?”  The second, “where is it?”  The purity and absolute incredibleness of his mind about blew me over.  As if packing for a week long vacation to a “place” for a defined time and then coming home.  Ouch.  His thinking is very literal though it is also clear that he gets, already at age 6, that there is more to the story.  I wish I could climb into his head and see the details of what he is imagining.  If only it were true that heaven was a place we visit, temporarily [like to be fixed and healed], before returning home to the place we so clearly belong.  [Please resist the temptation to argue alternate realities or after-lives or other religious mumbo jumbo].

Last year, I thought L-U-C-K-Y 13.  Thirteen years, on the thirteenth day of the month, of the thirteenth year since my daddy vanished [read inexcusably unforgivably barbarically ripped] from this world [and the life and family who adored him] leaving wounds that cannot be healed.  I like being positive, dwelling on the cherished and truly beautiful, even if – now too long ago – memories,  but lucky?  I thought maybe this would be the turning point [13 really is a lucky number in my family] and this past year it would seem easier.  Capitalizing on our optimism and happiness, some kind of maturing out of early adolescence, less sharp, more easily understood reality or acceptance.  Nope.  Cancer continues to taunt us, and in no way more profound than the reality that my father has been in heaven, where ever that is, for what seems like forever.

We talk about my dad all the time.  Look at pictures, share stories, descriptions, and each of his four prized grandsons carries his name.   I wonder, all the time, how much of who I am is thanks to what he taught.  The good, the bad, and the ugly – I was my daddy’s girl.  I wonder what he would think about the girl in her 40’s as opposed to the girl in her 20’s that he left just as she was getting started in a grown-up world.  I wonder if he would approve of who we are, our choices, our lives.  I wonder about the relationship we would have shared now, the one with his grandchildren…  I wonder about too much.

But leave it to my Danny to actually ask the questions.  The questions that led me to lie to him, and then led me to also wonder just how far away heaven really was.  I told Danny, that one of our greatest powers, as humans, was to love and be in relationships with others. It is the quality of those relationships, I believe, that defines our experience in this world.  If we live well, we live forever in the hearts of those people to whom we mattered.  Even after our bodies stop living, I told him, our souls, which are our essence, become part of the world and never go away.  So, my sweet boy said, “I never want us to go to the heaven place, I want us to be here (or Atlanta or North Carolina) together.”  Me too Danny…was my response in barely a broken whisper.  I started to try and explain that nothing is forever but stopped myself short and said instead that every “right now” is the same thing as forever, and that is what it means to make every moment count.

Now I wonder, whether feeding my son the euphemistic load of crap we “ought” to believe about life and death did him any favors.  Or whether, and seemingly more likely, I just delayed the inevitable ache we all learn with loss.

Maybe I should have stuck with a more simple truth, that the feelings of love do persist through all of time and that I remain convinced heaven is what is before us – here on earth.  Maybe that is why my daddy feels so far away but still so close too.  That I have no idea what happens after or next but that being together here, now, in this life is still the best I could ever imagine.

After 14 years, my dad’s absence still crushes me beyond what words can communicate.  I sure do long for the simplicity of Danny’s view and the possibility that he is not as far away as I fear.

Whatever the truth – my precious boy, the real answer is anything your tender heart wants it to be.  Maybe I can be the first person to live “forever” after all.  If for no other reason, to make certain that you and your brother are safe and good the way my daddy wanted to do for Aunt Jenn and me.

The single happiest day of my life was the day I got married.  I had to think about this…in tight competition was the day we met, the day he finally asked (after I impatiently waited five years for him to grow up), the day each of our sons was born, or the majority of the days since.  See the theme?  He, this man who inexplicably chose me, is my joy.  That said, when we married, I admit, I worried about the certainty of it all.  After all, I was brought into the world by two people who loved each other more than anything…until he couldn’t, wouldn’t – in any event, didn’t.

Jason loves to tell the story of how we met.  While in our law school library he [from the mezzanine level] saw a girl bent over a table “studying” in red jeans, and that was it…  A lot of life has happened since that day in 1996.

It ain’t easy kids!  Anyone who tells you that it is all fairy tale bliss needs to change the flavor Cool-Aid they are drinking.  Love is the easy part.  It is the rest of the equation that will knock you senseless.  And that is with just the regular work, kids, life, stress tango – throw in some cancer and chronic illness and well – you have to really really really want it…

I remember standing under the chupa wrapped in Jason’s tallis, with the rabbi’s warmth and blessing, and Jason’s strong hands and eyes holding mine and thinking, this is it:  that one perfect moment in a lifetime.  It isn’t that I was unaware that we would face challenges, but standing there, I was utterly overwhelmed with joy and contentment knowing that the challenges would be with this extraordinary man standing next to me holding me so tight that I truly believed anything could be overcome.  All those years were a prelude to the kiss of a lifetime.  A kiss filled with promise, intention, and optimism.  A kiss so passionate that my toes curl to this day thinking about it.

In the years since we have known life’s greatest joys and unthinkable sorrows.  And we have worked at being “us,” every single day.    It is Jason that introduced me to no purpose flowers.  Those most spectacular extraordinarily perfect and beautiful moments not driven by any condition, expectation, or obligation…  They are simply gifts and our life together is filled with them.  I am proud of this life we built, thorns and all.  To this day, it is the no purpose flowers that make me smile the deepest.

Tomorrow is surgery day.  Having finally more or less adapted to life with an ileostomy – it is now being reversed.  Harold is out, J-Pouch is in.

I am crazy scared for the next phase.  Not for the surgery itself or another hospital stay [which speaks volumes to the ugly reality that I have been through too much], but for the several months to follow.  I have heard stories of challenges that 42-year old women should not know from.  I wonder if I will every truly be the same girl again.  I am frightened I won’t be able to work, or work the same way.  Can you see it:  “OBJECTION…Um, your honor, the prosecutor is full of shit.”  I’m terrified the pain will return, or it won’t work.  I’m afraid I will never be the girl in the red jeans that stopped the world’s cutest boy wonder in his tracks.

A rather wise and dear friend told me that I am “allowed to lose my patience with the process.  Not all the time, but at select intervals of my choosing.  And then I am not to apologize.”  So I will…and I won’t.

Today as I drift off, I will be laser focused on that perfect moment under the chupa, on all of my no purpose flowers, but I hope you will focus on my Jason.  It isn’t easy being the other half and caretaker.  He has been iron strong in loving and protecting me these past three (read 17 years) and he is the source of my drive and resolve.  He has loved me better than I could ever love myself through it all.

I believe in B’Shirt, in destiny, though hugely uncomfortable with the possibility that mine could be short lived.  This life with this man, it is my ultimate no purpose flower.  I long for the red jeans stare.  I ache for normalcy of mind and body.  I hope to emerge at least the girl I was, dare I imagine better.   Our story is one of true love.  One meant to last for the ages.  We are supposed to grow old together.  NPS.  Most.  Extra.

Maybe this latest hurdle is just another prelude to lots of continued passionate kisses.

October came and went (along with another clear check-up)…  yippee!  November is here and offering up great forward momentum for our family.  I tried to “do my part,” throughout the month with speaking engagements, guest blogging, and even appearing on the front page of the Herald with my ass kicking Dr. Wang.

Here is one the guest blog entries:

Aware of my Awareness

https://baptisthealth.net/breast-cancer-blog/aware-of-my-awareness/

“October is a perplexing time for me (and a lot of breast cancer patients and their loved ones).  It is a beautiful celebratory month for the countless advancements and hope it presents.  But it is also a sad, overwhelming, and often frustrating month of reminders, mixed messages, and profiteering.

Although I never wanted to be, I am the face of breast cancer.  I accept my responsibility with pride to now help others on their journey praying I can make a different for someone…somewhere.

I am a wife, mother, sister, aunt, friend, advocate, a wannabe writer and photographer, federal prosecutor of environmental crimes, and yes, I am a breast cancer survivor.

At a recent speaking engagement, I was asked to share why my story is different.  But the truth is, it isn’t.

And that it why it is so bad.  I was a 40 year old girl, living a dream life, who (thankfully) had a routine mammogram.  I sat in the waiting room that day with about 10 others “aware” of the statistics and though, though too personally and painfully “aware” of the cancer’s destructive path, I did not think it would happen to me.  I had no risk factors or family history. But I had breast cancer, and one of the most aggressive forms.

My story is your story – awareness only has meaning if we use it to stop the madness, stop this awful disease from taking us away.  My voice has to be loud enough to honor those who did not survive, to make it better for those who must endure, to advocate for better and earlier detection, more effective treatment, and maybe, just maybe, prevent it from happening at all.

Every decision, every cutting edge – controversial even – step WE (I say “we” because cancer is a family diagnosis) have taken from a double mastectomy, chemotherapy, to a prophylactic complete hysterectomy before I was ready to stop building our family, has been guided by my desire that my loved ones always be proud, and never have regret over steps I “might have” taken to be cured.

I choose to NOT “live in the pink” but I also choose to find the courage to tell the brutal truth and advocate so another mother doesn’t kiss her babies each night with the horror of not knowing whether she will see them grow up.

I hope my story is the stuff of your dreams for its hope, strength, and optimism…

but I also hope my story is the stuff of your nightmares for the reality and tragedy that breast cancer is to all of us.

I hope you will take your awareness and get that mammogram, listen to your body, and advocate for your future.  I hope OUR story is one of healthy cancer-free life.”

But the deafening sounds of breast cancer awareness month were silenced by the terrible news that a friend from high school lost his 10-year old daughter to brain cancer.   So horrific my limited mind cannot begin to process the possibility.  I learned from the Miller family and their very brave daughter that only 4% of all cancer research dollars goes to childhood cancer.  I was appalled, horrified, and so very sad.  I remember thinking the same thing when my father was sick with a very rare cancer: how unacceptable it was that the determination of whether enough research would be done to save lives boiled down to whether the drugs developed would be profitable.

Fast forward, how lucky I am to have gotten such a trendy cancer [said with intense eye rolling (though really I am)].  I mean I am thrilled so much money goes to breast cancer research though far too many women still die.

But if we aren’t going to save our kids, why bother saving ourselves?

So do me a favor, in Gabriella’s prophetic words, stop talking and start doing.

Check out their efforts at http://www.smashingwalnuts.org

Much love,

jodi alison

Few things are more powerful than words.  They are a vehicle for much of the worlds good, bad, and power.

They make you whole:

-I love you…,

-You are healed…,

-I forgive you…,

-Expression…,

-Positive advocacy.

And they bring you to your knees:

-You have cancer…,

-There has been an accident…,

-I declare war…,

-No…,

-Conveying judgment…or

-Hate…

Words are magic.   They make you feel, are the basis for forming relationships, and they are the conduit between our minds and our realities.  Words touch the deepest part of our souls.

Today I checked my email to discover a report from the hospital had been forwarded to me.  Being the good Pavlovian dog that I am, my body and mind immediately responded by breaking into a cold dizzy sweat, I had to force my trembling fingers to read the words written on the page titled “Final Pathology Report” while the rest of me engaged in a full on tail spin.  But the news was good.  The written results showed my rotten insides were badly damaged confirming that we had made the right and only possible decision in having this surgery. That and the glorious detail that there was not a cancer cell to be found, right down to the clear-clean-disease-free margins.

These past three weeks rank up there with the most difficult of my life, but they are part of my life.  And according to the words on this particular page, a life now back on track to health and longevity.  The love and support you have shown us, again, overwhelms me.  From the deepest place in my heart, thank you.  I am doing “OK.”  A little better every day as I adjust to life with Harold (the stoma formerly known as Leroy –  name had to be changed.  Leroy was too cool.  Not nearly bastardly enough as…let’s say…Harold the putz).  You know how I adore irony, thus I am gagging (literally) on the fact that I spent the past two and half years adjusting to eating all things whole, raw, and green and now am relegated to all things white, processed, and low-residue.  Blech says the emerging blob that is me.  All in due time I suppose.  With a lot of luck and rest, the reversal will be in nine weeks time.

Anyway, just a quick post to update you (I’m sorry I have not been better with the phone), share my written words sending my love and good wishes.

I am besieged with gratitude to “be here” with my family to welcome a new year.

On Rosh Hashana it is written, on Yom Kippur it is sealed…  I pray we are each blessed in the coming year with all that we desire and sustains us.

I hope for health and happiness and the peace of faith that our lives are written into the Book of Life.

L’Shana Tova my dear friends and family.

Much love,

jodi alison

Most people think I started blogging when I was diagnosed with cancer, but that is not right.  And most people think everything I have written, has been posted.  Eh eh.  When I decided to move the blog to this host (a long story summarized by the realization that out of the 15 or so blogs I followed on CaringBridge, I was the only person still alive at 2 plus years and the immediate desire to put my words somewhere filled with life instead), I re-posted a few of the original posts.  I am considering going back and re-posting a lot more (are you still interested in hearing my voice?).  In the meantime, I came across my first post from 2008.  I sat down today to write and decided instead I said it better then.  Six years later, on the eve of feeding my youngest son to the world – KINDERGARTEN…Don’t blink:

 Wimper. Sigh. Glowing with pride. Bursting with immeasurable and unconditional love. I swear, I didn’t blink. I listened to those who had done this parenting thing before me and stuck toothpicks in my eyes and there they have remained. First out of necessity to stay awake and then out of fear I would miss even a single second of my boys lives. But it is happening anyway, this little boy – my baby – is growing up way too fast.

 Our delightful, amazing, and suddenly it seems, person-esque son, Daniel Edward is heading off to kindergarten in the morning. I remember so clearly taking him to his first day of pre-school. I was worried, really worried about how he would do. But in typical Danny fashion, he put on his backpack, took his lunch, gave me a great big hug and said, “don’t worry mommy, I’m going to have fun but make sure to come and pick me up soon.” He spent 4 years at Beth Am Day School and loved almost every minute! But a new, and bigger transition is upon us. Is he old and mature enough to start kindergarten in public school? Will he make new friends.  Any questions or concerns I might have are quickly assuaged by him. He’s an “adapter,” and no matter the situation he smiles and laughs and finds the good. With that confidence, I put aside MY anxiety…

I like my son. Does that sound strange? We all love our children, but seriously, I like him too. I like to be around him and talk and share. He is incredible and kind. He is smart and confident. He is affectionate and creative. He is everything I wish I was. He is beautiful and wise and already knows, just like his dad, exactly what to say to heal my soul.  I wish I could just put him in a bubble and keep him in a place that is always good and safe.

 Oh my god, how can my son be starting kindergarten?! Yet, phew, my son is only starting kindergarten. There are a few more years where his favorite time will still be time spent with me. But I confess, late at night, when fear reigns supreme, I worry, what did I miss, what if I blinked?

 I am on night five of my hospital stay and my heart aches more than my stomach knowing I won’t be there tomorrow for Danny’s milestone event.  It hurts with the sentiment of all the moms who see kindergarten as a dangerous point on the slippery slope of life afraid to blink because they know when they open them again it will be college.  And it hurts with the loss of knowing my illness kept me from the place I wanted to be most.  As if they knew exactly what I needed, I got a card from L&J which said:

 “A mighty wind blew night and day.

It stole the oak tree’s leaves away.

Then snapped its boughs and pulled its bark

Until the oak was tired and stark.

But still the oak tree held its ground

While other trees fell all around.

 The weary wind gave up and spoke,

“How can you still be standing, Oak?”

The oak tree said, “I know that you

Can break each branch of mine in two,

Carry every leaf away,

Shake my limbs, and make me sway.

But I have roots stretched in the earth,

Growing stronger since my birth.

You’ll never touch them, for you see,

They are the deepest part of me.

 Until today, I wasn’t sure

Of just how much I could endure.

But now I’ve found, with thanks to you,

I’m stronger than I ever knew.”

(Thank you L&J – best card EVER).

Watch out world, here comes my Danny.  While I may miss the milestone today of seeing him off, my roots are the deepest part of me, getting healthy and fighting so hard for all of our tomorrows.   It has been one of the hardest weeks of my life, but I am stronger than I ever knew, I believe I will be ok – to go along with my Danny for the journey…together – of course, always remembering never to blink.

 Much love,

jodi alison

Shit Fuck Damn Vagina Vagina Vagina.

Ok, there!  Hopefully that made you sufficiently uncomfortable, and now what I am going to say will not seem so downright ickadocious.

Don’t get me wrong, it isn’t that I underestimate your compassion, it is just the reality that most people talk about seemingly more boring matters (not less important, just more normal-oh-my-aching-back-esque).  Me?  Cancer, tits, ovs, ut, hair (or lack of), and now ass…  Just doesn’t have the same cache as my favorite song from A Chorus Line, does it?  Anyway, I’m procrastinating – let’s get to it.

If you forced me to describe myself, I would readily confess that I am in fact afraid of my own shadow. The balance beam, the high diving board, a bigger stronger seemingly smarter opponent, the possibility of not succeeding in school, work, or life, and well we know how I feel about cancer.  But it turns out, and I shock myself in saying so, I have guts.  Serious ass-kicking-failure-is-not-an-option-in-your-face (with a smile) guts.  For another few hours anyway.

Back off the ledge, I promise- I am great, living every blessed day with happiness, contentment, and cancer-free health.  It is amazing.  Truly (even with the reality of my ever-present frienemy A-N-X-I-E-T-Y, whom I have even learned how to better stick her foolish ass in the corner a lot of the time)  But I have also been really sick (if you didn’t know…great…I’ve had many years of practice hiding my gross reality).  I have lived with ulcerative colitis for 37 of my 42 years.  And while people live with far worse ailments than this, it’s no great shakes either.  The course of my disease has been relatively kind to me with long(ish) periods of medically managed remission (hooray for my g-d of a doctor) where I am ok(ish).  Other times, not so much.  I will refrain from too many of the details here for fear that my ass should seem larger than my breasts…issues.

Ironically, many years ago, as I watched cancer so cruelly and unapologetically ravish my father’s body leaving no room for his soul to remain on this earth, I quipped, “I’d like to be gutted like a fish.” Not so funny anymore.  In the morning, I will have my entire large intestine and various other parts of the plumbing removed.  Remember Freida, the hot itchy mess?  Well, she is being replaced by Leroy Brown, her shitty cousin.  Fine, no more bad jokes.   But yes, this time tomorrow (hopefully with the aid of copious amounts of morphine), I will be learning about stomas and bags and other horrible nastiness.  Leroy is his name (there is just no way to refer to “my stoma” or reality that my insides will be outside and remain attractive in any way – though I am open to any suggestions including fabulous shoes and very short skirts to draw your eyes elsewhere (Lisa, you are in charge, I’m told pre-op has good Wi-Fi and Jimmy, Charles, and Christian take orders 24/7)).

This is a big bad scary surgical ordeal, but as with everything, there are blessings…  My family (who has to be utterly sick of my being sick) has jumped into action arranging to be by my side and nurture my babies where I can not (AGAIN); my friends have been both loving with just the right amount of reminding me to laugh at myself.  ELM and LMS, gems of the most valuable kind, have set beautiful examples for me and provide a never ending stream of information, love, and support.  RG, LMS, RN and ELM have discussed topics and issues with me that you would not believe, each with empathy and brutal honesty.  I am so grateful to them all. I know that all-in-all, I am lucky.  If it goes as planned, after a several month period, I can look forward to a much more normal, medication and pain-free life while keeping my cancer risks to a level I (sort of) can manage.  Here’s to the optimism that this is the final and missing link to my longevity and good health. Oh – and no cancer.

But being true to truth, it isn’t all good.  Aside from the physical misery, there is a myriad of emotional “mess” and also guilt to contend with.  I attended and have since left my pity party, but there is a lingering sadness at the thought I’ve become too much of a burden and not resembling fun carefree-Jodi to those around me.  I watch my boys play in the woods and rivers and struggle that they deserve better than this.  Too many hard knock lessons to have learned by 10 and 6.  I’d bore you with garbage like how it is not fair, but as I remind my sons about 10 times a day when they protest, fairness, in life, often has nothing to do with it.

While I am a resident of another hospital ward, Danny will start kindergarten.  He likely will not remember that I was not there for the first day, but my wounded heart may never forget.  Robbie will start the fifth grade again explaining the inexplicable for why his mom is not there.  My life is built from a position of strength, it is really very difficult to adapt to making excuses born of weakness.  And my husband, well the pope has nothing on him.  He is a saint, the true real deal.  But he married a certain girl who looked a certain way and lived a certain life.  I know he would love me no matter what, but he too deserves better.  These bitter pills have been too many in a short period of time and it is sometimes difficult to understand even where I ultimately accept.

This summer has been magical.  We’ve enjoyed our summer house with true and much needed reckless abandon.  We worked hard during the week and played harder on the weekends.  Before heading home we stole two nights and three days in the woods camping.  Like last year, I implore you to stop laughing.  Despite what you may think, I truly am the ultimate outdoor mountain girl.  Being out “there” is my place!  With only the quiet of the blowing wind (and utterly irritating rain storms) I am totally clear on what needs to happen next and what I must undertake to achieve it.  But being the mush that I am, I will tell you, I look at my boys in the tent (that took us several hours, many drinks, and a wee bit of yelling to put up) and tell you that whatever has happened to me, I am the freaking luckiest girl in the world.  Any struggle would be worth it to be with them.

While loving the unusually cold temperatures in North Carolina, listening to very loud moving tunes, and hanging out of the window cruising the mountain roads, I taught the boys to “ride the wave.”  Feel the wind around you.  Stick your hand up and the resistance of the wind seems too much.  Arch it down and the wind glides with you.  Know what I mean?  It is the best feeling.  Both are great and true signs of life.   In the resistance, if you dare, you find your true character.  And in the glide, your finest peace. I will be practicing my own wisdom in the coming days and months.

Sometimes to really live your only choice is to ride the wave…and hope you have the right kind of guts for the journey.

Much love,

jodi Alison