can you allow yourself your dreams after you’ve seen your nightmares?

 

i didn’t have any understanding just how much a big ol’ bout of cancer would knock the stuffing out of me.  or maybe, it was less that i lost my stuffing (well, trust me that i gained plenty of stuffing over the past few years – then lost some – then…oy..) but that i battened down all the hatches.  almost every one.  i could not listen to music in any meaningful way.  i shut it out because my heart ached to want more out of it  – to let it touch me.  i shut out big dreams and oversized wants and certainly closed the door to seeing my life too far ahead.  it was too dangerous to crack that door open and get a glimpse of open sea – lest the door slam shut and you’re stuck back in the world of 1/2 drawn curtains and industrial lighting. 

but…time is a funny thing.  if you manage to stay in the game of time, eventually, slowly, you put some of it behind you and there is a glimmer that you might – just might – think about next year or plan for even a few years ahead.  i still ‘knock on wood’ (usually my head) and sometimes take a deep breath but slowly i find some more space between now and then. 

and, in a scenario i only allowed in my most private thoughts, i have allowed myself to not only dream but to do – to create and work on a life i have wanted to return to for many years – of making music and singing again and finding the discipline to be back on stage.  it has almost helped that i look nothing like my old former hot curvy sassy self because i am given the gift of not trying to recreate what was but to create and shape what is now and, more importantly, what will be because i want it.  that’s what i say to myself every week at each audition before i walk in through the door to face the casting folks.  quietly to myself i say:   ‘you are here because you want to.  have a pisser of a time.’  (the first part is mine; the second told to me once upon a hot-curvy-sassy-fling with a famous irish flutist who said he said that to himself every time he was about to walk onstage.) 

i now happily juggle my regular working life, my wonderful family (they might say they juggle me!); and the buds of a life of music and theater that is starting to, once again, belatedly, take shape.  what shape?  i’m not sure but i am determined.  and i’m here because i want to be.  i’m having a pisser of a time.

POWER TO THE PEOPLE: SUSAN G. KOMEN REVERSES DECISION!

ALRIGHT THEN….i have rarely felt so fired up as i have the moment i heard that the susan g. komen breast cancer charity had made some politically-motivated back-room board deal/manipulation to pull funding from planned parenthood.  and then listened to them spin spin spin during the vertigo-inspiring fall-out.  but most people, it turns out, have an understanding about compassion and fairness and what it might mean to be a poor woman with no means to have a mammogram or treatment for any diagnosis…both of which are constantly supplied by planned parenthood.  now – realizing that they were on the verge of destruction as any kind of charity with the power to garner contributions – they have reversed their decision and will continue funding planned parenthood.  i sometimes curse social media but right now i bow down to the power of facebook, wordpress, blogs in general and twitter.  people wouldn’t put up with the headline and social media allowed them to say what they felt – that they were offended in the most immediate way. 

sadly, during all of this i learned more than a few things about komen which make me remain queasy about the organization.  first of all – that right-wing witch – karen handel – has to leave.  immediately.  second, i learned that komen is like many uber-large charities – they start feeding off themselves and need to give more to research and less to glittery parties and such.  some of their corporate partnerships are exceptionally suspect – can you cure cancer and take money from a company whose product probably contributes to cancer at the same time??  and nancy brinker should have someone counsel her that when she is talking to the general public about how komen administers to every woman – she might look a little less uptight upper east side exceptionally rich – it rings pretty false over video. 

http://www.washingtonpost.com/business/economy/komen-revises-funding-policy/2012/02/03/gIQAVRa3mQ_story.html 

i’ll probably send my donation dollars to SHARE and DR. SUSAN LOVE ARMY OF WOMEN – SHARE does amazing reach-out to women diagnosed with breast and ovarian cancer (they were so kind to me – and it made a difference) and ARMY OF WOMEN – has been funded by Avon (‘meh’ as my teenager would say) but they are commited to research and finding a cure. 

SHARE:  http://www.sharecancersupport.org/ 

DR. SUSAN LOVE’S ARMY OF WOMEN:  http://www.armyofwomen.org/ 

i don’t need to be branded pink – i just need integrity and commitment.  and a cure for breast cancer. 

BOYCOTT SUSAN G. KOMEN – AND PASS THIS FORWARD –

Susan G. Komen foundation has decided to cut funding to Planned Parenthood – having been influenced by political right-wing moolah.  Screw them.  Don’t give them a penny and let them know.  I encourage you to unsubscribe their emails and post to your Facebook or social network site and email them also to tell them that they have done the unconscionable thing…bowed to political pressure about what a woman chooses to do with her very own body.   The very definition of wrong.

http://online.wsj.com/article/SB10001424052970203920204577195652290909774.html?mod=googlenews_wsj 

Here’s what I have written with email addresses below also.  Should you have another Komen email address, share here.  I ENCOURAGE EVERY WOMAN AND EVERY MAN TO SHARE AND LIKE THIS POST AND WRITE YOUR OWN EMAIL TO THEM. 

I will no longer give donations to this organization which has been influenced by right-wing anti-choice anti-woman’s rights politicians. I cannot believe you got it so very wrong. This used to be an amazing foundation but big money has obviously attracted big influence and not the right kind.

I am taking you off of my mailing list and encouraging any person with a dime to donate to breast cancer research to give it to another organization. It is horrible that this organization can betray women so terribly and judge them for making choices that are theirs alone to make. Planned Parenthood respects those choices. What’s next? Will Komen only research mastectomies or only research whatever is in the interest of the biggest check donation they get? It’s an abomination that this organization has chosen such a slimey path. You will never get another penny of my money and, I hope, no one else’s either. 

er – Breast Cancer survivor -

komen@komenoc.org; lwolter@komenoc.org; tthompson@komenoc.org; smckeough@komenoc.org; ekelly@komenoc.org; teams@komenoc.org; jhill@komenoc.org; info@komennyc.org

super simple joys

i abandon my kvetchy moments to write about one of the most basic current joys in my life.  one that was out of bounds for the past 6 years and now and then i am astonished to realize that i am, indeed, allowed to stand at my kitchen counter, peel and then consume, section by section, beautiful winter grapefruits.  red and glistening and sweet in a way that only happens in january and february - they are a simple treat that i have just dreamed about while they were disallowed for a woman taking tamoxifen.  indeed, grapefruit has the ability to mess with all sorts of medication – allowing some drugs to become much more powerful – in a bad way – than intended.  here’s one place to read about this:  http://www.webmd.com/hypertension-high-blood-pressure/guide/grapefruit-juice-and-medication 

i have always loved grapefruit.  perhaps it started way back when my mom used to serve us a 1/2 grapefruit – with a maraschino cherry and a drop of sugar on top – as our dinner appetizer (it was always that or a small glass of tomato juice.  i thought we were very sophisticated!)  i have cheated on my ‘must not have’s’ occasionally - i do eat the once-in-a-while portion of ma po tufu or miso soup and hope the gods of soybean-conversion-into-estrogenic-matter are not tempted to mess with me over such tiny and rare indiscretions.  but i knew i could never just have a little bit of grapefruit.  it was an all or nothing love affair for me – so i swore off.  over the past two months – as i’ve been sans medication – no, no, no, NO…we will NOT think about the aromatase inhibitor that i’ve currently declined to consume even after enormous pressure (“so what you’re telling me is that you care more about your “life style” (translation for me: memory, quality of life, not being 90 before i’m 55) than getting cancer again?” yikes) … soooo…back to our happy program:  - i’ve come home and feel truly surprised to look at the pile of grapefruits on the counter and realize that i am allowed to indulge.  and i find myself standing there at 5 pm and thinking – oh who cares about dinner - as i peel and pull back the membrane and each very juicy bite is utter pleasure.  and i am surprised and so very happy to feel this extremely simple joy in a deeply satisfying way.  party on.

when good decisions don’t make you feel good

 

i start out this post by stating that i know i am lucky.  i have health insurance.  we are two freelancers who pay directly for our insurance and i have very good health insurance that we pay through the nose to keep – skyrocketing premiums and now-$50 co-pays (damn that perpetually screwed-up by taxol toenail that now requires podiatrist visits every 5 weeks) and i am even on a separate policy from my husband and teenage daughter with the understanding that under all circumstances, i keep my doctors who have cared for me for the past 6 years.  ok….all that said…i am about to make a big change and it ain’t easy.

my radiologist is, and always has been, out of network.  it wasn’t such a big deal 6 years ago when my deductible was low and we were always covered for almost 90% of the cost.  she came exceptionally highly recommended by my surgeon and it couldn’t have been a better match.  compassionate and kind … a small practice where i was always greeted by my doctor with a hug and lots of chatter and where my films (now digital) were not only viewed before i left the office so i knew where i stood – but she brought me into the room immediately and reviewed them with me.  as my deductible went up, she really worked to adjust her price so that we had less financial outlay but last year it became apparent that even if we paid the minimum (and she actually offered to do it for the price it costs her to use the machine – but still that’s almost $700 cash we’ll never see again) it was all out-of-pocket. 

so with enormous trepidation, i decided to switch to an in-network radiologist.  i switched my mri to dec. 23rd and went through the forms and talking with new people – new people mean you get the great joy (not) of telling them the ‘whole story’ – a sort of ‘oh great, let me remember all the hell from the past’ conversation just to bring them up to speed AND you know you’ll have to do that at least two more times before the process is complete.  before, they were part of the whole story so no discussion necessary…just chatter about what’s new on the horizon.  new nurses; new doctor; allllllllllllll the new forms.  but the hardest part was when the doctor called me and offered to do it at cost and i had to stammer that even at cost (above-mentioned $650) we had to decline because of the bigger picture.  under sad circumstances i had a chance to say directly to her how much i love her and how i really believe i wouldn’t have gotten through the last six years without her.  it’s not so cut and dry.  all the doctors and nurses and technicians…my most vivid memories are of her wrapping her arms around me and telling me i would be ok and she would stand by me.  and she did. 

i made a good decision for my family.  every penny counts right now.  i made a bad decision for my heart. 

 

and then it was 6

i knew the day was coming – i watched it coming on my calendar for weeks.  the pink-washed october leads into my birthday and then rolls over and over to the date i was diagnosed with breast cancer.  do you think it is better 6 years later?  yes.  and no.  and yes.  lessons learned; pounds gained and lost and sometimes gained again; a daughter moving from a child to a high-school teenager; a marriage pushed past 20 years; some nights sleepless; no less looking over my shoulder but perhaps with more perspective … or not.  facing complicated choices about going on new and potent meds that statistically help with holding down recurrence rates but may or may not help me even a tiny bit but probably will not contribute to a positive quality of life that i currently have achieved.  do i sacrifice my here and now for the what if?  or do i jump off a no-meds-for-you cliff and hope that the mean and miserable rating on my oncotype test way back when doesn’t come back to haunt me – or worse, screw me over royally.  i watch my parents struggle with aging; my sister grab life by the cojones even tho she struggles daily with blood sugars from a life-time of diabetes; my friends  cope with …well, you know…all those things and thoughts and unexpected miseries  – some even starting down this path for themselves and i try to find some way to help them through without falling down an emotional rabbit hole myself. 

i spent much of today singing.  and i thought…not bad missy.  tomorrow it’s 6 and a day.

here was last year:  http://beanygetsablog.wordpress.com/2010/10/27/5-years-and-1-day/ 

this is 54. (a partial list)

october 14th 1957 + 54 years = october 14th 2011

i’m alive.

i’m happy to be alive.

some days i’m 35 pounds lighter than i was 4 1/2 years ago and some days i’m 30 pounds lighter than i was 4 1/2 years ago.

i really notice those 5 pounds now.

i am the aging mother of an amazing high school jr.  she surprises me (in a good way) every single day even as she rolls her eyes at me.  i just can’t say how much love grows in my heart for this witty, caustic, quirky kid i helped bring into the world.

i am married over 20 years which is longer than i lived with my parents.  that says a lot about my husband.

i love my house and hate my neighborhood.

i have worked very hard to once again have real and meaningful friendships in my life and think i’m succeeding – of course, it’s all to my benefit.  a few are over 15-years-of-emailing dear friends whom i’ve never met in real life but whom i hold as my closest confidents.

when i look in a mirror i think my hair looks good.  when i look at a photo of myself, i think my hair looks like i survived cancer.

i remind myself that i’ve put over 5 years of surviving cancer behind myself on a daily basis. 

i need more sleep. 

i often can’t stay asleep.

i’m doubly removed of estrogren (age and medications) and it’s really not for the better as far as my femininity or my ability to concentrate on reading a book is concerned. 

i still try on clothes that i think look fabulous but quickly realize that i could have worn them 25 years ago. 

i can sing better than 25 years ago.  now to find out if that means anything when you’re aging and zaftig.

i finally left organized religion behind and concentrate on being a good person in this world. 

i think about food and cooking and travel all the time.

i still love new york city but there’s a teeny part that can imagine retiring in victoria, b.c.   i can imagine retiring.  bliss.

without lists, i would not survive. 

i’m alive.

i’m happy to be alive.

i cried at the soho apple store

 

you know, you chug along putting days, weeks, years behind you.  and working at finally putting all sorts of new things in front of you.  and then your buried self comes and embarrassingly bitch-slaps you in public. 

 i am considered a 5 and a 1/2 year survivor now.   and you’d think that 5 1/2 years later, i could handle 2 different friends being diagnosed with 2 different kinds of cancer.  handle the truly genuine wanting to put warm arms around each to say ‘you’ll be ok’ or i hope you’ll be ok’ or ‘i’m ok with you being mad at not being ok. ’  and i do have things to share and am willing to share.  and being able to share and support and comfort and inspire to ask the right questions or understand how to refocus and laser in on their coming battle – these are all things i have now to offer.  because i have been there.  at the beginning of the road.  and it wasn’t pretty.

then today i had my annual gyn appointment in soho.  i love my gyn.  she found the lump that was waiting for anyone to discover it.  she’s something special.  and i know that her wife is going through post-treatment also – and i am honored that at my appointment, she talks to me and we discuss the journey that her family is taking – in many ways a much more complicated journey than mine - and i love to be able to be the one to listen for her and to her.  her wife and i share an oncologist and a surgeon.  so listen i do and i try to indicate in my supportive but honest words the marker posts of a future well-past the time they are at now – the now where you’re still seeing your awful chemo just over your shoulder and pains and aches from surgeries whose scars have, quite literally, not faded yet.  of being in the middle of a spouse hurting and aching and stalling out at life moving forward while children need attention and life has just become a day to day lesson in how to get through til we fall asleep tonite. hugs and smiles end my appointment and i go to spend a bit of time in a ny wander..one of my favorite things.  i think…i’ll go to the apple store because my itouch battery doesn’t hold much of a charge anymore and see what there is to see.

my name is called by one of the perky young techs and a woman runs a diagnostic on my itouch and tells me my battery is fine but my software is kaflooey and not in sync somehow which is mucking up my battery retention and she’d like to reset the unit.  huh?  ok.  it’s busy.  i’m distracted.  i wait.  my itouch comes back and it’s………….reset.  literally.  wiped clean of all of my games, photos, and apps.  she shows me how to sign on to my apps account and i download a few of the games.  and i realize that in reloading the games, my battery has once again plunged.  so this wasn’t the solution.  another tech is called and while i wait for the 2nd tech, i open a game and realize …it’s gone.  the scores are gone.  all gone. 

tech2 walks up to me and i look up at his relatively-sweet 25-years-or-so face and promptly burst into tears.  “they’re gone.  …she didn’t tell me she’d be wiping out all the game scores.  they’re gone”, i stammer with tears running down my face.  “your GAME scores”?  he looks utterly confused.  i stutter:  “almost 6 years of game scores …from when i waited through chemo and surgeries and scans and now they’re gone.”  i really wonder if the words chemo, surgeries and scans had ever, until that moment, been uttered in this palace of the future.  my sweet tech2 had a look that translated into ‘what does this have to do with computers’ on his face.  and i realized that something very very deep down inside had reached up through the comforting and the coaching and the moving forward and bitch-slapped me – just, i think, to let me know that it could.

gardening and cancer

 

yes, i know.  it’s so beautiful in my little brooklyn backyard.  from the wet, muddy pit that it was about 22 years ago when i first moved in to the beautiful quirky yard filled with roses, basil and burgeoning tomatoes and cucumbers not to mention overgrown patches of irises – my backyard is our own little oasis.  when i was just out of treatment – 5 years ago this summer – i wasn’t up for much.  i remember walking down the street in park slope, brooklyn near my work, and seeing a beautiful flowering vine.  it wasn’t clematis…which are vines i have many of against the fences.  i bought it immediately and sometime in the next week, planted it near the foot of my climbing yellow roses.   i don’t remember much of that summer but i remember sitting on the back rocker just watching my garden and thinking that so few people took the time to sit in their garden.   late that fall, i finally looked up the vine that i planted and, much to my horror, found out that the red trumpet vine that i had purchased and planted was deemed to be one of the most invasive vines around…it would take over and strangle all else.  without a moment’s hesitation, i went to my yard, dug up the vine, and discarded it. 

last week, i took time out from a busy work schedule to delay heading into the office – i gave myself an hour in the cool morning to get down on my knees and really focus on weeding out a patch of the garden.  one by one i plucked out the usual offenders…the rain had made them easy to grab so that their roots came out – giving me hope that i was winning the weeding game.  then i looked over and stared.  there it was.  at the foot of the yellow climbing roses…the telltale green vine that said that my excavation 4.5 years earlier was a fool’s errand.  invasive vine.  it seemed the very definition of invasive.  it was still there.  and growing.  and probably spreading.  and i started crying.  in my own garden.  a cruel reminder that you never know that what you think has been taken out of  you isn’t still growing.  i hate cancer.   i’ve gone back into my garden … but it took a few days.  i hate cancer. 

 

it doesn’t matter who you are..

a very good post by the famous dr. oz.  i don’t particularly follow him in any fashion but happened upon this article he wrote in ‘time’ about being diagnosed with a precancerous polyp.  i encourage you to read it.  he speaks from an interesting position: meshing professional knowledge with personal issues. 

Our lives get complicated fast, and we are very uncomfortable being uncomfortable. We detest the passage into the unknown — that feeling of being out of control, victimized. Numbers like 75% or 6% or 50-50 are abstract and conceptual. The sickly, swoony feeling you get when your doctor says, “Come see me in my office,” is something we can all imagine today. And so we avoid the test to avoid that experience — and that was precisely the choice I had made.

Read more: http://www.time.com/time/specials/packages/article/0,28804,2075133_2075127_2075098-1,00.html 

the discussion of who has access to healthcare aside, it’s a touching read.