October 26, 2015: 10 years

For weeks – the 10 year mark has loomed in front of me. And given that I’m not exactly the ‘isn’t it always a happy day today’ kind of girl, I’ve had mixed feelings about it. I’m not even sure that I want my survivor-date to be the anniversary of the day I started a month or two of being so wasted on zanax so that I could make it through each day and just breathe (and nod out – cheap date that I am) while trying to process the idea that I had cancer. Breast cancer. Cancer? Family history made me familiar with massive strokes and heart attacks brought on by too much schmaltz consumption but…cancer? Not in my vocabulary.

You know those moments you never get out of your head? In the complete haze of the day (waiting 3 hours before I was seen and then an in-office biopsy and waiting more and then some more with a husband who could only gamely try to look like its all going to be ok), mine is the older lab tech who came in and said, in the oddest almost-jocular fashion: “Well, the good news is it’s the ‘garden-variety’ type.”

I chewed on that for years. Through all the hurry-up and wait. Through being told that this found lump was much bigger than it ended up being. Through finding out that this medium-sized lump was much more aggressive than they thought it would be. Through making choices about keeping one breast, loosing two breasts, or getting my plastic surgeon and breast surgeon to forget that they hated each other and agree to a massive lumpectomy and resizing me bilaterally. Through the start of the chemo – head in a bucket mid-night because someone didn’t take me seriously when I said I get easily nauseous and having to have a friend secretly watch our young daughter overnight so I could be rushed into Manhattan to be rehydrated and given more serious anti-nausea drugs and then rushed home so the school morning was as if we had been there all along. Through the shaving of the head (bless my dear friend Lisa for being my witness). Through all my conflicted feelings about wearing a wig. Through the second set of chemo and the vicodin-glazed afternoons to calm the shooting pains in my legs while I stood in open houses pretending to work (bless my dear friend Janice for making me pretend). Through an office colleague saying to me on the street: ‘wow, you know you lost weight and you look good’ while I was only ½ way through treatment. Through the real blessings of my family and some steady friends who came over and pretended that I could really play scrabble and concentrate on the game. Through the 5 ½ weeks of radiation and all the bubbling blisters and the determination to be done so that we could drive my daughter to her first summer at the camp I loved. Through the wonderful trips we’ve taken and the sideways glances at every airport as I stand with my lymphedema sleeve and glove on my right arm – oh, and the quick learning curve to never ever put it on before you go through tsa screening lest you be thought to harbor something evil within the elastic compression sleeve. Through the you’ve-got-to-be-kidding fight with my new health insurance company when they call you on your birthday in the middle of breast cancer awareness month to inform you that, essentially, all those pesky breast cancer survivors were costing them too much money at Sloan Kettering and that they were going to eliminate the hospital and doctors as a choice– oh wait, all my care is there now. (won that particular battle).

10 years have not gone quickly. What happened to me has happened to many survivors of trauma: I saw so many other people like me. Or maybe what I really saw was that I was exactly like so many other people. Walking slower down the street. Watching tv and thinking you’ll just scream your bloody head off if you have to hear the word ‘cancer’ for the 10,247^th time that week. Feeling utterly determined to move forward. Feeling utterly exhausted when you can’t always do that. Feeling that your life – the progression of your life – was taken unfairly away from you and feeling that your life is something really different and new and possible even as you embrace the joy of the everyday life. Tamping down the at-least twice monthly fear that you’re done-for because your left pinkie is aching or you have a bump on your arm that turns out to be a bug bite. Trying not to be so angry. Hoping no one will notice your vocabulary work-around when the chemo-fasia of your brain doesn’t allow you to access words in a timely fashion. Trying not to notice that your belly is somewhat bigger than your boobs. Trying to sing too soon and having to lay down on the floor of the studio winded from one song. Going through a somewhat secret bout of DCIS two yeas ago (oh boy….non-invasive!) and being treated to a teeny lumpectomy and finding out that you were getting rewarded with even more radiation but realizing you were not going to sink to the depths of despair and were actually able to believe your incredible new breast surgeon who held your hand kindly and said “I really mean it that this is a blip on the radar”. Finding out that you can sit with a newly diagnosed friend and give thoughtful advice to help them on this path – the oddly-best of which involves the importance of ‘colace’ and how to jettison the ‘friend’ who wants a ‘staring role in your illness.’ Finding out that you can sing again – and, in a weird gravitas kind of way, far better than before .

It wasn’t a secret-gift…it was cancer. Fucked-up mean-spirited screw-with you cancer. But with the gift of whatever the pros had to throw at me, because that’s what they had at the time, I have survived and I have chosen to love my friends more, hug my family all the time and accept that I am happy to be the big personality that I am. If you see me being too still – too quiet – nudge me, ok? I was in a bad way a few months back til I just stood up and confessed – quite out loud – that I realized I was sitting around ‘waiting for something bad to happen’. And pissy peevy get-over-yourself girl that I am, the saying it was the banishing of it and I have to remind myself to ‘sing out, louise’ and remind myself that it really has been 10 years. I work very hard to daily remember a version of Lisa’s Grandma’s wise advice: ‘Don’t borrow worry.’ (I work at it…rarely achieve it tho).

A few weeks ago I was on the stage at City Center and sang – it’s not solo work but it’s been hard and very rewarding work to be part of an amazing group chorale –and in two weeks it’s Carnegie Hall with the same group. I have a daughter who is the light of my life and a husband who is shockingly kind and steady. I aim toward the big sing again with incredible teachers holding me up toward the light. I am surprised when I realize that people don’t look at me now and think: oh, you had cancer. I have friends who I work to become a better friend toward. Family who are surprisingly resilient And I have myself. A very different myself. I know what matters. I suffer even less the fools and the bullshit. I love the genuine. I still wear mostly black.

I’ve survived 10 years. Now off to work on the next 10….

10 years

this is only a test

checking to see if this post makes the fb feed leap.  do you see it?

this is only a test! do you see it?

It’s been a while – and this is a test to see if my blog posts will automatically post to fb.

AFFORDABLE HEALTHCARE MAMMOGRAMS: know your code!

the new affordable health care regulations go into place this week.  i wanted to understand how they would affect my benefits – especially concerning mammograms since, as you might guess, i finally have no need for contraceptive nor gestational diabetes screening.  i found out that mammograms are covered and no longer limited to one per year but ‘as many as deemed necessary.’  but here’s the rub – and why you, the patient/consumer must be on your administrative guard:  it all depends on THE CODE!  so insist, talk and review with your doctor and with the administrative assistant who has your code-destiny at their fingertips. 

if it’s coded as PREVENTATIVE:  COVERED AND COVERED AND COVERED (not that anyone wants multiple mammograms in one year – smush…owe).  for my fellow survivors: i understand that you are entitled to COVERED-PREVENTATIVE MAMMOGRAMS if you have been 5 years post-diagnosis and with no recurrence/evidence of disease.  

if it’s coded as DIAGNOSTIC:  you are still on the hook for your CO-PAY.

Please check and recheck but here’s what I’ve been told:

SCREENING/PREVENTATIVE (COVERED) MAMMOGRAM CODES (2):  G0202 AND 77052

 DIAGNOSTIC BILATERAL MAMMOGRAM (NOT FULLY COVERED): G0204 AND 77051

we’re not talking pennies out of our pockets so KNOW BEFORE YOU GO. GET YOUR MAMMOGRAM AND BE HEALTHY – and save your co-pay for your next stress-reducing vacation!   

the do great campaign

or…as i tell people i talk to:  be a warrior.  one of my earliest posts about what to do when you hear that someone has cancer was written by me while i was trying to put together pieces of a life shaken completely apart by cancer.   i am very proud of that post – because it rings true years later.   

“What Can You Do” :

https://beanygetsablog.wordpress.com/2009/06/12/what-can-you-do/

a month of so ago, i was asked to give my time to be part of a PSA (public service announcement).  i was actually wary.  i am no pollyanna.  i like and believe in caustic behavior and just cringe at all the gooeyness that is preached about cancer survivors and going through cancer  but, i have to admit, in a few minutes i realized i was surrounded by grounded smart and funny souls who had gone through their own journey and weren’t drowning in pink or buttery over-sweetened sentiment.  this was support on a level i could really get behind.  so here it is.  i tell people who are going through cancer diagnosis or treatment – be a warrior.  don’t look left; don’t look right.  be strong and let the people around you support you.  this PSA speaks to those people around you – are you one of those people?  encourage someone to do great.  inspire. 

The Do Great Campaign

http://www.youtube.com/watch?v=STN9l0Oo8Tc 

also:  (and i’ve never had a chance to use this now oh-so-used phrase): you can LIKE it on FBook!

http://www.facebook.com/DoGreatCampaign

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.