No Purpose Flowers & The Great Loves of My Life!

This is a significant milestone in my journey of healing and cure and I thought this was a good time to talk some about YOU and ME.

Cancer TAKES so much.  Like the feeling in your fingers and toes.   OH right, that is what chemotherapy TAKES while it GIVES you life.  That and your hair, sense of humor, emotional stability, short term memory (ie, knowing the pin while standing at the ATM…yes, I suppose it is possible that Jason changed it as a as a joke or other attempt to stop me from redecorating our house which is what I am doing while otherwise being a non-working under-achieving blob), waistline, taste, nails – do you need me to go on?  Tonight, though it took my ability to TAKE my kids out for Halloween.  Rat bastard.  The unmitigated gall.   I tried so hard to rally all day and push through to GIVE my boys the normalcy they so deserve.  I clenched my fists so tight that the already thin and peeling skin bled, as I contemplated, maybe the clammy sweat building on my face would look like part of a costume.  I joked all day when asked, I dressed up as a cancer patient.  How glamorous.  Then again, when a retail saleswoman wouldn’t do as my mother asked, I tried to knock her off her guard by asking if I could have her beautiful hair (you healthy people are so easy to make uncomfortable).  I found this picture on my camera yesterday…it was from August after preemptively cutting off a foot of hair for Locks of Love and surviving my first chemo. It isn’t a very “good” picture.  The rest of my hair was already rapidly falling out but I can’t help but notice how genuinely happy we are.  My boys, my precious boys and our family.  “My” illness is theirs too.  So much GIVE and TAKE.  By my count, 12 of us were “diagnosed” that day. Too much GIVE and TAKE.

I watched the last of the BC Awareness Month Lifetime movies.  They were emotional but good.  Five, The Education of Dee Dee Ricks, and Living Proof to name a few.  Living Proof, the story of the development and bringing to market of Herceptin was both the best and the hardest to watch.  Even ten years ago, my story might have – like would have – been very different.  An extraordinarily uncomfortable thought.  Some of the key players in the development of the drug are my doctors and it was fascinating to see their portrayal.    That said, how hopeful, because I know with certainty that each day brings advancements and cure making it possible for me to GIVE my faith and TAKE confidence in my future.

I joked in my last post that was desperately seeking my mojo and someone very kindly replied, that mojo isn’t something someone can TAKE from you, and that mine still skulked around.  Here is the thing, Cancer isn’t a someone, it is a true terrorist of the mind, body, and soul.  Pretty powerful stuff, you literally need to be a member of the Justice League or some other superhero to escape unscathed.  I know, I know, I’m scathed but not beyond repair…even if my “mo” hasn’t reunited with me, “jo” quite yet.  Yes, I plan to GIVE the terrorist hell all my remaining days.  In the meantime, I up the offered reward, if you see mo or jo…TAKE them and send them my way.

I am continuing to GIVE energy to my research and education of Cancer, and feel that as my own best advocate I am right to be diligently reviewing every lab, every result, every recommendation, every scan, pathology report at this time…It is a different, though equally as painful, read five months in and while I’m grateful I had the where with all to make the decisions we’ve made to this point, I find myself asking new, equally difficult questions as I near the “end” of the hardest part of my treatment.  For example, how soon can you take my ovaries out (yes, if you know anything about me, that is possibly the saddest and single most ironic statement to ever leave my cyber-lips), which hormone therapy is right and best, and are you absolutely positively certain I don’t need radiation – how big a clean margin is enough?  What I mean is that I am preparing my list of renewed questions to ensure I understand every single everything, every implication.  I can not control what what I can not control, but I refuse to be a bystander in my and my family’s future.  Gotta feel for my poor dream team of doctors – but every word is going to be reviewed together.  I’m prepared to GIVE in and jump off this next cliff with faith and confidence but you better bet that I’m taking the best parachute made and I’m stacking the odds that it opens correctly.

Bottom line is that Cancer tried to TAKE my life.  I say FUCK YOU Cancer, times up – I’m taking it back.  I originally said I would GIVE you a year, I have changed my mind, we are done negotiating, fear doesn’t equate failure, and I am moving forward.

OH, and by the way, this is the last post you will see me capitalize the word Cancer.   When I next post, a huge milestone will have been met.   Hello November!    I’ve been waiting patiently for you, I’m glad you are here, we have things to GIVE…and TAKE.

Much love,

jodi alison

I can not tell a lie, if I never see another thing in the puk’tasish color of pink it will be too soon.  Mercifully, October is coming to an end and with it Breast Cancer Awareness Month.  I mean, even my eggs are stamped with the blessed pink ribbon.  I “escape” to the mall to walk on hot days and every store reminds me of what can’t be forgotten.  TV – forget about it.  The shows, the movies, the commercials.  The companies “contributing” 4 cents to research while they profit on the rest.   I search for the left turn out of hell, but the reminders kick me in deeper.   I’m done, stick a fork in me.  Officially over it.  The hoopla I mean, I need to turn my energy and angst elsewhere – like my Cancer free future.  Don’t get me wrong, the work of the Komen Foundation and the pink campaigns and fundraising are beautiful, awesome, wonderful accomplishments.  I very well may owe my life to their work, but still, it is also so very overwhelming.  I was speaking to my Aunt and we chuckled that even the rock dwellers certainly must be aware by now and that it is time to convert more of the effort to advancing and approving the innumerable drug leads eradicating Breast Cancer.  More power to the researchers and doctors and less control to the drug profiteering companies.  Let’s make it Cure Month.  Take more of  the money – cure cancer, all of it.  Done!

Time has a funny (NOT) push and pull quality.  If you were a No Purpose Flowers follower, you know that over the years, I have often written about time and how I wish I could slow it down and how uneasy I am about the speed with which it barrels forward.  When my babies were younger I wrote about putting toothpicks in my eyes to ensure I wouldn’t blink because that’s how fast time flies.  I didn’t (and don’t) want to miss a single instant and have always been acutely aware how important it is to embrace all the moments, good and bad.   But there is a tension between wanting time to slow down and simultaneously move faster (ie, hurry up and get to vacation, reach a milestone age, achieve a long desired goal, become richer, better, more beautiful…or slow down and enjoy more of the every day blessings and joys because even when you are the most present in the moment, times barrels forward at a ferocious pace.  That tension is ever evident when you are battling disease.  During a crisis (of any kind but certainly cancer treatment) you watch the clock and beg for the moments to pass quicker, but yet, everything you do and endure is to achieve the opposite.  More time.  Pass faster…slow down.  SIGH.  Some days I do not know which I want more.  I despise the suffering but yet, I welcome it and endure it “smiling with my so-called positive attitude” because what wouldn’t I do for the gift of… more time. And a whole lot of it!  So, as if to acknowledge my deepest desires…and fears, November is around the corner and brings with it some cooler air and our sixth and final chemo cycle.  Incredibly five months have passed.  Of course, I still have to finish out numero cinco.  It is day one and I’m feeling good and crummy.  My sister AGAIN walked out of her life to come to Miami to help me.  If you have children, you know what a hardship it is to just up and leave.  And she ain’t here for retail therapy or sipping frothy fruity beverages on the beach.  She left her husband and babies to come here to me smack in the center of hell.  For someone who is never at a loss for words, there are none I find adequate to tell her how grateful I am for all she has done in the past five months, how our adult relationship is among the very most important in my life.  She knows when to cry with me, when to cry NOT with me so as to not scare me, how to kick my ass, and how to just love me in all the right ways.  She is my best friend. My love and gratitude run to the deepest place of my soul and I am very happy she is here.

I shudder to admit that I have developed a perverse relationship with my friend chemo.  I hate it with every fiber of my being, but I also love it with the same intensity believing that as it rages through my body, it has done its job and killed anything potentially menacing in the future.  Leaving it behind invites new fears.  Really awful crippling fears.  While this may sound wicked of me, I have tried very hard to NOT listen to gut wrenching stories of other women living (and dying) with metastatic disease.   I have to be able to hope (and believe) this can’t happen or at least won’t…happen to me.  Otherwise, I am reduced to living as a prisoner and that would let my captor, Cancer, win.  I recently met a woman who told me her story (despite my begging her not to) the cancer was always in her spine – even when they told her she was cancer free.  Threw me into a several day tailspin.   It is the hardest part of moving forward.  To not spin into full blown panic every time your back hurts, or you feel a twinge or a whatever somewhere in your body.  It is something that I have yet to master.

We did the Miami Race For a Cure and had a great time.  30,000 people participated in Miami and they raised over $2 million.  Pretty impressive by any standard.  “Team Jodi” came out in force – thank you for coming and for all your generous donations in our honor.  Here is the link to a few pictures of our day there and at the Dolphins “pink” game.

http://www.shutterchic.com/photos/swfpopup.mg?AlbumID=19710861&AlbumKey=RwQ8p5 
(the password is pink.  HA!!  j/k…  the password is peace).

I have also attached an article that was written, I had seen the online version but not the hard copy so I was very surprised to see my face on the cover!  Sigh.  I sure miss that hair, and I mean I really REALLY miss it.  Yes, hair is a small and silly price to pay for your health, but I do miss it.  And these extra drug induced lbs – PFFFT!  Not enjoying you at all.  I have already bought your first class ticket out of here.  Bottom line:  I miss looking and feeling like me.  I miss my mojo.  If you see it wandering lonely on the streets, grab that sassy sucker and stick in the mail back to me would ya?  I can only fake it for so long, I want ME back.

I need distance from all things Cancer so I can work on the next phase of my cure and healing.   I am Jodi Alison Hirschfield Mazer.  I am the daughter of Sheri and Robby Hirschfield…David Stone…and Lois and Alan Mazer.  I am the sister of Jennifer, Kevin, Carrie, and David.  I am the Aunt of Jordan, Alex, Gabrielle, and Alexis.  I am a granddaughter and a friend.  I am a goddaughter to the greatest godparents there are.  I am an “Aunt” and Godmother to my other special babies.  I AM THE WIFE OF JASON SETH MAZER AND THE MOTHER OF ROBBIE AND DANNY MAZER (AND CODY TOO).  I am an attorney, engineer, and wannabe photographer and writer.  I am a pretty darn good (and fair) prosecutor.  I protect our environment so we all can enjoy its beauty and can do so without being subjected to obvious and latent dangers.  I fight for what is right, just, and for a level playing field for us all.   These are the things that define me.  Not Cancer or illness.  I am NOT CANCER, I was just the unlucky one who got sick.   I will not define myself by such nonsense, I hope you won’t either.

With that I thank Breast Cancer Awareness Month and all those dedicated to eradicating disease and helping those living with and affected by it.  But I also say good sweet holy riddance! Don’t come near me with pink for a while, a long while.  I’m looking forward to returning to signature blacks and grays…and brown.  Beautiful brown – hair that is.  One cycle to go.

Much love,
jodi alison

It is day 5…of cycle 4.  I’ve surprised myself with this one and done pretty well, well all things considered… That is until the wheels in my amazing Robbie’s head seem to spin faster than I could keep up with.  It was not his intuition that shocked me, that child has a wise and deep soul, it was the seeming first signs that the devil had dared etch away at his innocence and security right before my eyes.  The news reports celebrated the visionary – – a great man who truly made a difference leaving the world a better place (I agree, I am as faithful an fruit lover as there ever was – if my house were burning, after my family and camera – my apples would be next!).  They lauded Jobs as something of a miracle, if not for his accomplishments, for beating back cancer longer than he should have been able to.  Really?  REALLY?  Seven years is good enough?  R-E-A-L-L-Y?  We can do better, I’m certain of it.  Instead of attacking one another, judging one another, we could cure diseases like cancer.  Imagine them apples???!!!  Sigh.    Ok…I’m climbing down from the soapbox.  But not all the way, because in 23 seconds, someone else will have the ground fall out from under them and be diagnosed.  And tonight another son will ask an equally painful question and another mother will cry herself to sleep with painful what-if fears.

On a happier note, in the spirit of that which doesn’t actually kill you really makes you stronger [read saves your life], I had my first cardiac evaluation since starting the wonder juice.  Remember, arguably the most important drug I am taking is also the one that is cardiotoxic.  Phooey on that, however, my heart is figuratively and literally, in perfect and very happy form!  And thanks to said great test results, the the good chemo fairy princess has granted me another three months!  WOOT!

OK, now consider yourself in a time warp of sorts, I started this entry a few days ago.  If only days 6 – 8 had really passed that quickly and painlessly, but they did pass and here I sit pretty [read ugly] on the fine side of cycle 4!  I will put off the rest of my thoughts from that day for another time in order to do some brief public shouting of a different kind.

Here is an entry from the guestbook,

“Whether you like it or not, you are an inspiration to so many (with me being one of the so many).  Because of you, I have made the effort to raise money for the Dana Farber Cancer Institute.  With a goal of $2,000, cancer is probably not too concerned by my efforts.  But, every little bit counts..and every little bit is leading us closer to a cancer-free world.  Did you know that, because of research, 14% less cancer deaths have occurred from 1991 – 2005.  Just imagine what this number will look like in another 5 or 10 or 15 years.  The world is improving…and the world owes you a lot of credit.  Without sounding too over-the-top cheesy, thank you for sharing…thank you for being you…and thank you for being such an inspiration to us all!! “

WOW!  You rock Cools, and just so the rest of you know, he ran a marathon this past weekend in part in our honor.  On top of it being hugely humbling, it is proof positive how we can make a difference.  More personally, I have to shout out to him and all of Jason’s college friends [read life long amazing men] and their families who have been amongst the most supportive in our ordeal.  I can’t imagine why a group of guys would show such love to their friend’s wife [read Jason really is that good of a man and deserves it], but I sure am grateful for you all.   And my friends are no different.  Laura rode the PMC with my picture on her handlebars, many of you are walking with us this weekend… All of our friends, you all continue to feed us, help us, and love us.  One day [read when I can without being a blubbering fool], I will tell the world all the ways WE survived Cancer because of our friends and family. Our lives are richer because of you all.

You all know that I was raised in one of those villages of sorts with lots of Aunts that made my life rich with family.  What I haven’t shared is that one of my Aunts was also recently diagnosed with BC.  Tonight, on the eve of surgery, my loudest shout is across the country to her as a very public reminder of her strength and courage as she joins this awful war.  Tomorrow she will become a survivor who HAD BC.  But tonight my heart aches knowing a little about what she feels.  You are a strong beautiful woman who is loved by all who know you.  And while you are putting your faith in skilled surgeons hands, they can’t fix all of the hurt they will inflict, can they?  But not your wonderful children, perfect grandchildren, devoted husband, or countless friends across the country who will be holding their breath tomorrow care about body parts.  And neither will you when you realize that YOUR cure gives you 30+ years with us all.  G-dspeed and easy healing beautiful girl.

Tonight my thoughts are with her, and all those in the world, touched by Cancer’s barbed and unfair hand.

Much love,
jodi

L’shana Tova friends!  On Rosh Hashanah it is written, on Yom Kippur it is sealed…

In a previous entry, I promised to come back and explain my “Faith and Fight Without Flight” stage of “kicking Cancer’s ass.”  I have not forgotten, it is just that it is complicated, at least the faith and flight parts.  The “fight” comes naturally.  😉

While I am a person of deep faith, I have been reduced to fearing that G-d may not love me, or more simply that G-d – with the vast array of problems in our world – can’t possibly be attentive to the individual needs and issues of any one person and that my situation is just a consequence of the randomness of the world.  The Rabbi likes to say, G-d was, is, and will always be…  [selfish warning…] but where do I fit into that equation?  And does my existence in the bigger picture actual matter?  I have similarly struggled with figuring out where my father is in all of this, because I certainly am not feeling very “watched over.” [If this were a more formal legal writing, this is where I would have to insert the footnote counterpoint of how “lucky” I am to have caught my cancer at its earliest stage, to hopefully be “cured,” and how blessed I am that “this” is “all” I have to go through thus arguing for the clear presence of lots of “watching over” me.]

OK, back to my real point, with all the time I now spend in my house, I have already gone through just about every closet in our house…twice.  Today I stumbled on old keepsakes and cards including one from my father dated May 1997.  It reads in part:

“Your forte has always been your ability to deal.  To deal with problems and with people whether in business, family, or friends…in all situations.  This ability, combined with your perseverance, intelligence, and sense of fairness will guide you up the ladder of your career and in your life.

You have certainly been steeled by “trial by combat” during times of your life.  You may not understand now, but someday, during a difficult time in your adulthood, you will survive, and then thrive again, because of these experiences.  It was an important part of your education…as a person.”

OK, I get the message Dad…and G-d.  Faith is up to me, and me alone.  Well played Daddy with the card falling out of the pile in the box on kitchen floor the week of the high holy days.

Regarding flight –  you must know that if I could run, I would.  If spending my days under the covers would help, I would do it, it would be easier.  But it doesn’t help, so I don’t do it.  I get up each day, even if I have to crawl and I celebrate that I’m alive and able to fight.  There has been a lot of talk about being inspiring.  So incredibly kind of you – but I fear undeserved.  Asses and elbows folks.  I would run so far, so fast you can’t imagine.  It isn’t an option, so I dig, and fight with every bit of grit my life has prepared me for.  And bravery – I don’t know.  I appreciate the encouragement, but I sure don’t feel very brave.  I didn’t elect to serve in the armed forces or run into a burning building.  And I certainly didn’t stand before the executioner in the firing line with 7 other women raising my hand offering to take one for the team.  RUN – that is what I want to do.  But I can’t, so I don’t.  I will fight because I can.  Because my mother told me to never ever give up, no matter what, in the other 400 cards that fell from the box today.  Because my sons deserve a mother – not just any mother, they deserve me – for all I am, and am not.  Their souls were entrusted to me, I’m not ready to give them to someone else just yet.  And my husband deserves a fitting wife, not just any woman, but me – good, bad, and otherwise.

And because if I truly believe I am worth fighting for, then I’d better be prepared to fight the hardest for myself.  “I” deserve nothing less, don’t I?

I do have faith, but I have some learning to do to fortify it, flight just isn’t an option, and so I fight with strength I don’t even understand the origins of because I have no other choice.  I want to live.

On Rosh Hashanah it is written, on Yom Kippur it is sealed.  My prayer for us all is health, happiness, peace, and lots of vibrant, bold, and indelible ink…as we are inscribed in the book of life.

Much love,
jodi alison

The Muppets released a new album with many of my all-time favorite songs so it goes without saying that our car plays a continuous loop of said songs…for my kids enjoyment, of course.

For example, “Movin’ right along in search of good times and good news. With good friends you can’t lose, this could become a habit.  Opportunity knocks, let’s reach out and grab it, together we’ll nab it…Movin’ right along – footloose and fancy free.”

And movin’ right along we are, after next week – we are half way there.

Good times:  check!
Chicago was amazing even if too quick.  Nicole was exquisite, the wedding amazing and the time with family wonderful.  I can’t imagine not having been there. This weekend is Disney.  I suppose I could  have just stayed home and rested and waited it all out, but when Jason and Robbie decided to go with the Maccabee group to Orlando’s Blizzard Beach and Danny cried and looked to me, it seemed like the obvious choice to say, yup – we are going too!  We are going to “snack around the place,” at his favorite Epcot while the big boys do their thing.  After-all, life is for the feisty, and I am nothing if not feisty so – count me in smush!  Please understand, I am not being reckless, rather I am being careful and deliberate.  For 8 days, I can barely lift my head, for the next week I try and play catch up pretending to feel better than I actually do because my sons need a mom and by the 3rd week, I’m preparing for the next cycle.  In between, I can’t work, concentrate, or do much else.  So when I get good, no great, days – I take advantage!

I choose to live my life on my own terms as opposed to letting cancer control it.  That means that when my doctor and counts permit, I’m going where I want, when I want, and I’m gonna smile while doing it, even if I look like a puffy bloated bald alien mess.  Tonight we danced on a bridge with the kids and one of their best friends as if we weren’t sharing the space with many thousands of others.  It felt pretty darn wonderful.

Good news:  check!
Had my first “3 month check up” with cancer surgeon, and everything is  good.  I am so blessed to be in the care of these women. A veritable dream team of beautiful talented amazing women, Dr. Wang, Dr. Marshall, Dr. Giron, and my friend Dr. Rosenbaum. I had a very long and honest discussion with Dr. Giron about the past 3 months and my future.  I went to the appointment deliberately alone and I asked some extremely difficult, frank, and scary questions.  There are no guarantees…for me or anyone, but I’m told I should spend more time worrying about the other drivers on I-95 than losing my life to breast cancer.  Cancer is not a single disease.  For that matter, breast cancer is not a single disease.  The 1 in 8 number is horrifying enough.  Ladies, go out to dinner for a girls night, and count it off – one of you at the table is drawing short stick.  It is not a happy statistic, but the kinds are not all alike.  And early detection and aggressive treatment can make a difference.  A cure is possible.  I had a conversation with someone soon after I was diagnosed and I remarked that I was still hopeful that I wouldn’t need chemo.  Her reaction left a permanent mark on me, she said, chemo is your friend.  Don’t fear or fight it.  I didn’t understand then, but I do now.  As difficult as this all is, I’m proud of our decisions.  I’ll take my pillow and live on the bathroom floor for as many days as necessary.  My goal is the permanent cure – I will settle for nothing less.  So, my dear friend chemo, let’s spend the week together.  You do your thing…and I’ll keep doing mine.

I think, maybe, I need to write a book called “This Is Not Your Father’s Cancer”…or perhaps something wittier and with a happier ending, but you get the point.  Some people believe there is no cure for breast cancer.  I believe my doctors when they tell me that “my kind,” “my situation,” “my diagnosis” is.  I will never understand my G-d chose me and my family to walk this wretched path (I would have volunteered to champion the cause with far less trauma and stress), but I think I’ve decided that the part I need to advance is long-term survivorship.  Survivorship is the part where you figure out what comes next – after the horror, where you learn to live with the reality that you’ve had cancer, that you live in fear that you might tangle with cancer again in the future, but that you need to move forward with your life in the most healthy yet realistic manner possible.

So go ahead, drink the cool aid with me.  C-U-R-E – my 4th favorite of the 4-letter words behind only l-o-v-e, s-o-n-s and l-i-fe (by the way, shit, damn, and fuck are a close 5th, 6th, and 7th – and rather cathartic to walk around screaming at times, even for a potty mouth like me).

In other good news, the school year is off to a fantastic start with both kids having hit the teacher lottery jackpot.  We are so grateful to them for being so wonderful to our children…with just the right balance between nurturing and butt-kicking and so proud of how both boys settled into their new routines and are being the little mensch’s they always are…  They seem to remain largely unaffected by what is going on around them and appear as joyous as always.  I wish for them to keep that childhood innocence for a lot longer – it is beautiful.

Good friends:  check!  check!
You continue to amaze me.  You call, run errands, get on planes to help, feed us, and make sure that our children are in all the right places at all the right times.  We are so incredibly grateful for all you have done and continue to do.  I need to live another 50 or so years, because that is about how long it will take to repay your kindness and to pay it forward.  Even your messages here in the guestbook – you could never know how great they make us feel.  We save them and read them at chemo – you all rock.  We print every single one for the boys to read one day.   We are blessed to have you all and we know it!

Opportunity is knocking:  Open the door!!
Jason’s law firm honored me by forming a team to participate in the upcoming Komen Race for a Cure!  Wow!  How lovely!!  I hope you will join us in not only fighting for MY future, but for all the mothers, wives, daughters, sisters, and friends who stare that unbearable 1 in 8 lifetime risk statistic in face.  Whether fighting for a clean beautiful earth that we can safely inhabit or fighting for my own life – I haven’t lost my optimism and acute awareness that we each have the power to make a difference…if we are brave enough to try.  The contributions in our honor have touched us so deeply.  Thank you with all our hearts.   So come out and walk, play, laugh, and/or contribute to a future without cancer for us all.

This is the link:

http://miamiftl.info-komen.org/site/TR/RacefortheCure/MIA_MiamiFtLauderdaleAffiliate?fr_id=2299&pg=entry

Click on “Join An Existing Team”
The team name is:  Ver Ploeg & Lumpkin, P.A.
The team type is:  family and friends

So that’s it for last week – it was a great one. This week – not so much.  But half is half and we are doing OK!

Much love,
jodi alison

The fog is lifting.  In an eternity I could never accurately describe the thick, soupy, disgusting horror show that is the chemo coma.  But I will tell you that at the first sign of its lifting, as the normal’ish (and I limit the description to ’ish because I’m fairly certain that I no longer have any basis on which to assess what normal is)  a calm’ish begins to wash over and cleanse you and your eyesight sees single and not multiples, and you have an immediate sense of empowerment and relief. We are talking the stuff of crazy, mad, giddy relief.

I made it through another round…YES I (we) did.

When I got up Sunday morning, for example, I was so happy to not have the desire to jump off a rocky cliff into the eye of acopo-hurricane Irene while standing under a traffic light about to fall in an F5 tornado while also simultaneously telling my kids (and convincing myself) that I was just fine and not to worry…that I went into a rage of control seeking.  In this utterly out of control world, you take snipits of decisive energy when you can.  Today my blameless victim was the kitchen.  As in I emptied every single drawer and cabinet (Dare and laugh?  I could show up in your kitchen in a few weeks…) onto the floor and unleashed some kind of unholy war on my poor spatula’s and dishes (hear the uproarious cheers of Container Store stockholders everywhere). Stupid dishes, you are no match for me, and you dumb spoons, you are going where I tell you to today, and the crud in the toaster oven, you have finally met your match here even if the cleaning products scrubbed my peeling skin right off my hands!  Yes Yes YES!   I am (almost) in control.

With Monday though came the need to venture out into public for various reasons.  I’m not much of a faker.  Never been any good at it.   I really don’t like that when I see people in public they tilt their seemingly all of a sudden very heavy head to the side and sigh as they ask me how I am as they stare in shock that I am not wearing that awful mop top of a hot itchy wig.  It is so very nice to know people care. Truly, I’m surviving on the love and care of family and friends.  But I’d prefer if they said something more along the lines of hey Jodi…glad to see you out – hang tough or something similarly socially acceptable and a little less pitiful and pitying.  I am not trying to make others uncomfortable.  I suppose I could make it easier on you all and just wear the stupid wig or better yet, stay home…it’s just that (and I’m sorry) I hate it and the thing is, this isn’t about you.  So I ain’t fakin, cut me some slack, would ya?! 😉 Consider yourselves very lucky that the lovely people in my life have adorned me with some of the most beautiful scarves you have ever seen.  Definitely not perfect (like I might have stressed over my hair being in this humidity), but trust me, it could be worse.  In any event, it is me…at this time in my life.

In other perfection seeking news, I had my next “BFTIT” (best uchem tits in town) appointment.  The surgeon is awesome, I just adore her personally and professionally.  She was thrilled with the progress (said I am way ahead of the game) and drum roll please… the next surgery is set for January 16, 2012.  This may seem irrelevant and very far away, but it is a really big deal – it means I am doing great and she is planning for my future.  That felt so yummy that I almost didn’t mind when the “technical artistry team” came in for some rather dignity-sapping photographic moments.

And last but not least, my doctor said it was OK to travel this weekend!  My counts are pretty darn good. WAHOO!  WOOT!  Get jiggy with it!!  We have sweat the decision on whether we would be able to travel to Chicago this weekend for months.  Our precious Nicole is getting married and I was determined to not miss it.  Cousins and friends from about the moment she was born, seeing her joy and dancing at the wedding…. being with my family…  that approaches perfection.  And fun too! So with sexy black tie gown, and far less sexy lyphomdema sleeve, mask, and gloves in tow – I am Chi-town bound!!

LEAVING THE PAST WHERE IT BELONGS.
SURVIVING THE PRESENT.
PLANNING FOR MY FUTURE!!!!!
LIVING MY LIFE!!!!!!!!!!!!
Perfectly imperfect.
Sweet dreams tonight.
Sweet sweet dreams.

Much love,
jodi alison

Dear Cancer –

Since I learned three months ago that you had invaded my life, my body, I have mourned, cried, fought anger, been physically tortured, lost my dignity, confidence, questioned my faith..in G-d, humanity, and medicine.  I have felt weak and vulnerable.  You made me feel like a coward and a failure.  Because of you I now cry, and often sob, when I look in the mirror.  And it isn’t just me you so relentlessly punish.  I watch my loved ones suffer in a different but profound ways.  You rudely and insensitively invaded silently and with deadly potency without the slightest warning or mere indication.

But you are the real coward, I did nothing to invite or encourage your presence.  I did not welcome you to our lives.  I was neither negligent nor complicit, I did not do anything wrong.  In fact, I diligently lived a life to avoid attracting you and I checked for your presence to the maximum medicine (and insurance) permits.

There are so many things I fear, but I will not be afraid to be honest, to cry, and to mourn the losses I have endured in 12 short weeks.  But make no mistake evil Cancer, that I cry doesn’t mean you have the upper hand, it doesn’t mean that I am depressed, or am wavering in my positive attitude.  You underestimated me, my spirit and soul are strong even if my cellular makeup has gone temporarily haywire and my emotions fragile.

I have been told I will emerge stronger with a deeper appreciation of my blessings.  Hogwash!  For longer than my memory permits (which you should know dates back to being 2 or 3), I have held the deepest respect and gratitude for what I have.  Every one of my beautiful, hard fought for blessings, I am acutely aware that every minute is a gift.  It is you that should spend some time learning this lesson as you haphazardly and recklessly try to destroy.  I live my life pursuing personal and professional greatness, what have you accomplished?  Terror, fear, destruction?  You should feel shame, not me.

To those who prefer my more witty chipper posts, I’m sorry.  Today is not that day.  Today is a chemo day.  Today we should be celebrating my daddy’s birthday, not remembering that you, evil Cancer, took him from us.  Today I should be at the first day of school with my sons feeling the ordinary angst of a new academic year, not sitting in this awful room surrounded by sadness and hurting that it was not me to kiss my sons and sent them off to new adventures toward growing up.   I have the benefit of one cycle at my back, but I now also shoulder the burden of what the coming days will bring.  I sit now with cycle two underway.  Do you know what that means Cancer, I soon will have two at my back.  Like a wind pushing me forward past your putrid stench.  I hope you know Cancer, I will stop at nothing, NOTHING, to overcome your evil empire.

At the end of our war, I will be the heroine.  I will move forward and will regain my spunk, style, and confidence.  Maybe even my beauty.  I will embrace the next (G-d willing) six decades and devote my time to protecting and loving my family and lessening the pain you inflict on others.  I do believe that there will come a time where you are permanently defeated, prevented from ruining the very thing that means the most in our society – healthy and happy families.  And I, F**ing Cancer, will be there that day, standing on the mountain peak, full of life, to celebrate your demise.  I will do so with the millions of angels you took without right, sitting on my shoulder, knowing their battles and experience have made my future possible.  And I will do so with the millions of families who may be spared your atrocities in my mind.  I will be there and I will win.

Much love,
jodi alison

Thanks Enzo for the reminder, and you are right, beware the whimsy of fate, she (and cancer) are a bitch of a lab… but still, I’m a great driver, torrential rains and all.  The car goes where the eyes go, so, you bitch, BRING IT!  You aren’t taking me.

I have held my head high, put one foot in front of the other, and, with some nudging, have remembered to breathe.  Today marks another milestone in my healing.  Chemotherapy.  In other words, the really awful nasty shit, or more politely referred to by us, as after-care…  I ignored the insight to wear my best sweats and dressed mightily for the occasion.  After-all, I still have my signature hair.  Thanks to the love of my mother and dear friends Wendy, Lindsey and Julie, future appointments will be donned by my new signature friends, Hermes and Pucci.  Today, however, it is all sassy me! But all the while, even in between some laughs with chemo buddies Sheri and Jason (while Jennifer managed all four boys and every other aspect of my life the hero that she is) I choked back the most gut wrenching and defeated sobs I have ever known.

Without disrespect to any of the great literary, if not cash generating, works and diets on dealing with or beating life threatening diseases or death…I am here to describe the 7 stages of kicking cancer’s ass (as opposed to the 7 stages of death and dying or living on extreme freakish snake oil w[h]ine-less diets).  And this seems to be a good time to set these boundaries in this do or die duel…as I can see (surreal) the first drips of poisonous goodness creep closer to my veins. Drip drip drip…sigh… and so it begins and ENDS!

1.  Outrage, shock, big big tears, and the depth of sadness you thought only existed in other perpendicular universes.  And fear.  HOLY CRAP – the fear.

I think this one may be self explanatory.

2.  Learn, absorb, sift, and purge.

Let’s face it, I am an information whore, I ferociously absorb anything I can learn.  Often a good trait.  Not this time.  Within a week of diagnosis I was subject banned from the internet.  Let’s face it, even an advanced degree from the University of Google can get you into a whole mess of trouble very quickly.  Sorry for Jason, I have more closely focused my internet activities on shopping bulimia in a desperate attempt to “look great” as I wonder the streets of  this fiery humid hell.   For example, I wondered into the book store to gather some reading materials on better, healthier eating.  Now we do eat well in this house, better than in most homes.  Still, before I knew it I was delving into the merits of the hunters, gatherers, plant eaters, carbo haters, protein loaders oh good grief, I had to be stopped.  I will survive cancer only to have a nervous breakdown and an eating disorder to boot.  Thankfully Jason stopped the out-of-control-cyclone that was me…PURGE.  So, I’m sticking with safe information and using whatever common sense I have left and picking and choosing some new recipes and good habits.  Next I am taking on juicing (just kidding)!

3. Denial, despair, followed by hope.

They got it wrong.  They mixed up the slides.  This is not happening to me.  I get screenings, every thing they recommend – I do.  I follow every flipping rule.  Heartbreak.  Total and complete devastation and ruin.   Will I ever know another peaceful minute?  I think that in order for hope to penetrate and not just be a surface dweller you have to have blind faith that when they say you are cured, you are cured.  The melding of emotion and logic has never been an exact science, but I’m trying.

4. Annoyance

One of the things I continue to struggle with, is that I’m so private and this is so public (OK, so I’m becoming a bit complicit when I blab on and on here).  From this room where each gaunt, bald, sad face stares at one another during treatment to the stares, looks, and fears in restaurants and parks or stores.  It seems no one looks at me normally anymore – and there is no where to hide.  When going through medical treatments at another difficult phase of our lives and being put into some kind of freakish hormonal state of psychosis, I joked to a friend that I needed a vacation from myself.  What a strange foreshadowing that has become.  I’d like to take a leave of absence from myself, please.  Just a quick break for a latte or a stiff drink or a walk in peace.  Just a brief reprieve each day to let me go back into my illusive bubble I always speak of where me and my family are safe.

Oh, I did have a hilarious moment of the evil stare by a wife of someone I knew at a restaurant.  She was like back off my guy with those “things,” it made me laugh…a lot.  My Lisa sent me a box of BC goodies, really funny awesome stuff.  She told me about a shirt that said “No, they are not real…the real ones tried to kill me.”  Love how she made me laugh.  Need to add laughing at myself to the to-do list more often.

5. Finding faith and fight with not so much flight.

Still working on this theory.  Will get back to you.

6. Making friends with your new shadow.

When we were packing up from NC and I was cleaning and putting away my camera and lenses, I had a particularly sad moment when I feared I might lose my love of taking pictures (let alone ever being in one again) amongst such ugliness.  I decided, however, that it was more important to not hide from the hand I was dealt and that it was too important that my sons one day understand how hard I fought for our life together and that I did so with an occasional sliver of grace and courage.  So, we all know my pictures are the best (haha), but there is a local photographer that I just think so much of.  Thanks to the generous urging of Sheri, we did a shoot with the incredible Shanna Nye this weekend.   The cancer shadow is here to stay and it lurks where I least want it, but I am making strides at staring it down.   I am going to have to learn to live with its uncomfortable presence without allowing it to do more damage than it already has.  Like I previously said, cancer gets a year – that’s it.  After that, I am the winner.  This was a significant first step for me.  I hate how I will look but it will be part my story and so I will find the bravery to document it too.

7. Some kind of twisted and honest combination of the above.

An attempt to navigate temporary awfulness to walk proudly, vibrantly, courageously into a long happy and healthy future.  To enjoy my friends.  To savor my family.  To make thrive and safe-keep the exquisite and deserving souls that are my sons.  To live to nurture them and love them unconditionally and help them become the men I believe they are destined to be.  To grow old with my husband who I love more than anything on this earth.

I reserve the right to go back and further develop and comment on my theories later, but for this long day, it is time to snuggle with the boys.

Today was mentally excruciating and physically exhausting, but still, I made it!  Think of it as a hard reboot of the entire system with a super pac-man defrag-like clean-up along the way.

~~~~~~~

*Note, the Enzo references are to the beautiful and compelling book, “The Art of Racing in the Rain.”  If you are a dog lover, it is a great read despite the whole brain cancer thing…

**These ramblings occurred during my first chemo, I realize I never posted it.  Opps.  The week that has followed has been straight out of a sci-fi movie.  On day 2 I cut off 11 inches of hair to donate and am sporting a temporary chin length style of sorts.  Today is day six, and other than a lot of linguring aches, ick, and fatigue, I’m crawling out of the hole.  What I would have given to have seen the rabbit in that ugly hole.  Chemo isn’t for wussy’s I tell you, but one down, five to go.  I know this week the big hurdle will be the loss of my hair.  If I am to be honest, that will be worse than the previously forsaken body parts, but there is no avoiding this, and I do know it will eventually grow back. I’ve decided to credit each of these cycles with a future decade of my life. I have learned that I am both weaker and stronger than I knew.  When it was too much to think about one day at a time, I settled for 30 minutes at a time.  One down, five to go…the car goes where the eyes go, and I really believe I am going places.

Much love,
jodi alison

Greetings from the incredible Blue Ridge Mountains where we are enjoying every precious minute of being together, smiling, laughing, and playing in the woods and rivers!

Ignorance may be bliss, but information is power and we happily report that the questions have finally been answered to our satisfaction and we are confident that the course we have chosen is aggressive but safe, correct, and, after a bad-ass kind of year, will put breast cancer in our past permanently.  We adored the doctor we spoke to today, although “geographically undesirable,” he will go into the books as one of our angels.  He kindly and patiently worked through every detail, question, and concern.  He said this a “great” (funny if you think about it) and curative situation.  He said that the particulars of my situation are “arguably the most favorable possible.”  He helped us find our confidence to finally decide on the course.  We know this is the best team of doctors we could ask for.  We are blessed to have such a team of experts to champion my well being.

We have another week and a half to play and prepare and starting August 1 we will begin a year long course of chemo and hormone therapy (well the hormone part a lot longer).  The first six months will be, by far, the worst – but as I have said before, it is a small price to pay to grow old with my husband and see my magnificent and special little boys grow to be men.

Speaking of my little buggers, we finally found the courage to explain more of the details of the situation to them.  There are discussions no person should live to have.  One is you and your spouse being told, “you have cancer,” another is telling your 4 wonderful parents, “mommy, I have cancer,” it goes down like I imagine cyanide might.  And worse still, is telling the same to your 3 and 8 year old sons.  But we did it (and without tears I might add)!  When I told Danny that I would have no hair, he responded, “don’t worry mommy, you will still look like a princess.”  Robbie, very matter of fact-ly said, mommy I love you “most”, you will be ok, and I am going to help.  He then reminded me that it was my turn in scrabble.  We told them that while the special medicine would make me look and sometimes act funny – that it was our friend and that we were lucky to have it so stay healthy and strong.

Speaking of being lucky, it hasn’t escaped us – how lucky we are, even while stuck in the midst of such misfortune.  Each of these doctor conferences and appointments has been attended by no fewer than six of us.  We have friends doing better research than we could ever accomplish, people cooking, driving, and helping to ensure we have spoken to the foremost experts in the world – literally.  Each parent, sibling, colleague, and friend has formed a impermeable “protect Jodi” barrier.  It is incredibly humbling and appreciated.  There are moments when I even feel safe…  It has always been my top priority to be a good person, above all.  Through all your actions, I know I have more work to do!

So that’s it for now.  Time to return to the river and get ready for our picnic, “dinner with the ducks.”

Much love,
jodi alison