October 26, 2015: 10 years

October 25, 2015

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 10,247th 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

10 years

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self-soothing

April 24, 2011

lately i’ve started reading again.  really.  with small incremental exceptions, it’s been years since i’ve put down one book and started the next and onward from there.  i used to be a voracious reader.  whenever i get really busy coupled with getting older and needing to focus on whatever is making me busy, i tend to push comprehensive reading away.  now bring into the picture that 5 1/2 years ago i was diagnosed with stage 2 breast cancer and you will understand my that my tendencies became deep ingrained exercises in ignoring the big book read.  i couldn’t bring myself to concentrate when all i wanted to do was get through the hours and days.  i distracted myself with tv – the more forgetful the better – and games of bubblet on my itouch.  and those bubblet games took hold.  5 1/2 years later, you’ll find me on the subway or waiting in a doctor’s office or any waiting scenario and i’ll pull out my itouch and start tapping …i self-soothe – getting lost in the puzzles that are never the same way twice but always let me get through minutes…sometimes hours…of time where i cannot concentrate on anyone else’s stories.  lately, i’ve been trying to make myself read on the subway.  i promise myself that i will read one chapter before pulling out what my husband has nicknamed ‘the tapper’.  sometimes, i cannot concentrate and find myself reading the same lines over and over – but it’s all in the practice and i make myself move through it.  after-effects of chemo and tamoxifen combined with middle age and menopause do not make for easy concentration.  the bubbles on my tapper let my mind go mercifully blank and quiet.  i play a bit before i go to bed each night…letting my mind go still before knowing that i’m ready to fall asleep – otherwise i stay up late into the night with worst-case scenarios playing over and over in a loop.  now what i have to work on is reading each chapter and bringing it inside myself knowing that the tapper can be left aside.  it’s like teaching a little kid to stop sucking her thumb.  her thumb.  my tapper.


5 years and 1 day

October 27, 2010

5 years and 1 day ago, october 26, 2005, i met my husband for an early lunch at veselka in the east village in nyc, walked over to ‘toy tokyo’ to pick up a birthday present for my then-11 year old daughter’s friend, and went together to sit for what turned out to be a 4-hour wait at nyu cancer center to have the bump/lump that my gyn insisted was a plugged milk-duct examined – since it was ‘too big to be cancer’ (given that it showed up out of, essentially, nowhere) and since it had to be removed anyway.  I waited for the breast surgeon with an unending parade of women.  And waited.  And, I might add, waited.  Did I mention that we waited for 4 hours?  Well, if I could just go back and know that those 4 hours were the beginning of the waiting and long days.  Once in, it was another long haul.  A new face and the negotiation between getting to know this surgeon very fast and finding out – almost by 7pm that night (after we made arrangements for our daughter to stay over at her friend’s house) – that trouble was not just brewing but here.  the advantage of living in a big metropolitan city is having big medical centers available.  within an hour a biopsy was drawn – then and there (the first of many long needles) – and an hour later a gentleman walked in … we understood that he was lab doctor who read the biopsy slide and stayed late to take care of it and talk to me … an older man with an easy lope … and said – in an oddly cheery way: “well, the good news is it’s a garden-variety cancer.”  and then i don’t remember much after that.  for months.

fast forward 5 years and 1 day.  plow through the nights of my angry frustrated writing to a group of friends who were unprepared for the level of piss and wailing that came off my keyboard and, very nicely, encouraged me to keep writing as well as keep going forward.  past the now-ex-friend who tried to tell me i should take the fermented magic beans as a cure for cancer; past the plodding through of multiple tests; the nodding off in the car from the xanax i took so that i could breathe through the anxiety attacks; through the haze of the surgery decisions – mastectomy…reduction…reconstruction…what about the lymph nodes…and through the surgery with it’s recovery-time marked by the memory of my wonderful brother-in-law visiting at my request (to lend some brotherly relief to my husband who was drowning in estrogen-based days and nights) and he gently washed my hair in the kitchen sink while my drains hung in my side pockets; past the extremely long haul of chemo including the mulitple-consults with other doctors (bless my friend lisa at sloan kettering who passed my test results along to the best of the best for 2nd and 3rd opinions … and who went with me when i had my head shaved free of hair before it fell out in clumps) from the night after my first chemo treatment (at st. vincents cancer center) when we had to have a friend come and stay like a stealth babysitter at our house because i couldn’t stop puking and had to be brought back into manhattan to the cancer center for new anti-nausea meds and rehydrating so we sneaked away at 11pm with daughter asleep upstairs and came back at 5 am with the realization that it was a whole fucking awful new world ahead of us; through the daily radiation (back at nyu) for which i was relieved to not be puking until my skin started blistering and i felt like someone took my fatigue level and wacked it with a mighty hammer way down under the ground; to the rebuilding – sprouts of hair; going back to work (which i did through the treatment but part-time and was basically held together by a few dedicated colleagues) and then realizing i needed time off from work (my favorite quote from that time: “but you just had all that time off”!  …oh yes, that was a holiday); then back to work slowly and planning each day to try … try to move forward.  a triumphant trip to paris a year later for my 50th and to prove to myself that i was, indeed, still here.  dealing with the mild lymphadema that came my way when the 3 levels of lymph nodes were taken out in surgery meant and means wearing my compression sleeve and glove on every flight and suffering the looks of many at every airport we go to.  way too much overeating to prove to myself that i didn’t have to deprive myself of anything.  dealing with the chemo-brain changes that are subtle but oh so there … i call it ‘chemo-phasia’ … the inability to find specific words or names for at least 5 minutes into any conversation.  2 years later understanding that i could stop shoving every slice of pizza and cake down my throat and could actually lose weight and exercise and bought my wonderful ‘bertha’ – my gym-grade elliptical who serves our whole family now and worked slowly and methodically on losing 35 pounds so that i wouldn’t ‘survive cancer and die of a heart attack.’ 

and that brings me to this:  5 years and 1 day after i was diagnosed i think i am entitled to say – at least for today – that i have survived.  i am a survivor of breast cancer.  i asked my oncologist last week what it meant to be 5 years out and she said in her usual ‘oscar-madison’ way:  “nothing…i’ll be seeing you when you’re 90.”  meaning: stay vigilant.  you are irreparably changed and, from what she implies, she and i will be bantering when we’re very senior citizens.  it’s not all pink and rah rah out there.  i am not a pink rah rah person.   so don’t take this the wrong rah rah way but today i get to say to my anonymous readers, my friends, my friggin’ world-class dedicated doctors – each of whom have been amazing in their talents and their spirit, oncology nurses everywhere with their incredible spirit and ability to get any needle into any teeny vein, my family, and, mostly i think, to myself:  i have survived and need to keep moving forward. 


snip SNIP snip

August 10, 2010

 

i cut off most of my hair.  or, i asked for most of my hair to be cut.  no small moment for the woman who perpetually checks the mirror to be sure that her post-chemo hair looks decent.  i thought my hair would grow back in 6 months but the truth is it took almost 2 years to have a reasonable head of hair.  reasonable means that there were no major (plenty of minor) bald spots and i could start getting the stylist to cut pretend bangs.  pretend because the delicate hair at the front hairline didn’t really grow back – even tho using minoxidil helped the bulk of my hair growth – that front line just gave up the game. 

i’ve been trying to keep it long – for me that means that it just touches my shoulders and has some ‘swing’.  my hairdresser has known me for over 25 years.  he did my hair at my wedding.  he permed my hair in the 80’s into big beautiful curls when i was out in the world as a professional singer – oh the big hair!  when it became clear that i’d need a wig, i brought it in and he cut the wig.  i was trying so hard to be brave.  i put it on and had to hold it down while he cut it.  i was sobbing the whole time but determined.  everyone tried to pretend that i wasn’t sobbing.  he wouldn’t let me pay for that visit.  i cried more. 

for the past 2 years, he’s been working to bring my cut into normal focus and has really succeeded.  but lately, i’ve been looking in the mirror and realizing that i looked too old for my hairstyle.  my face was older – hell, i’m about to turn 53 in october – but my hair was the style from my 40’s.  respectable but aging me.  i made an appointment.  but not with him. i love him but  instinctively, i realized that i needed a new set of eyes looking at me – to help me reinvent myself – or, at least, my look.  but making that step – to voluntarily cut my hair to a level that was close to the growing-out phase had not been something i had been able to face.  i quietly booked an appointment with a local hairdresser who, i know, works with lots of women my age and seems to be good at the short haircut.  i didn’t talk about it with anyone.  i just put the appointment in my datebook and went.   he knew my story already so i was grateful not to have to repeat the telling.   and yes.  i have short hair.  i closed my eyes and didn’t open them until it was done.  he was grateful i wasn’t going to second-guess him.  and when i opened my eyes, i saw that i was right.  i was ready.  i was not the barely-haired woman from 4+ years ago.  i was a hip-looking tossled-hair 52 year old woman with noticeably less ‘blank’ spots and a physical and emotional lightness that i had only secretly thought possible.


*her* year without sex

June 28, 2010

 

i didn’t know whether to laugh, cry, or yell at the screen:  http://www.theatlantic.com/culture/archive/2010/06/my-year-without-sex/58592/   i really try to let people have their own experiences and value them but when reading this article, i couldn’t help but have a rolling ticker-tape narrative going under the screen like personal subtitles:  oh wait, dear.  just wait.  or observe.  or listen.  hope absolutely nothing extraordinary happens to you and you cross those tenuous years from 55 to 55 and you widen around the middle, watch your hair thin, realize you really don’t look 35 anymore, and either have less interest in sex or find that there’s less interest in sex with you from either the general other-side-population or your significant other.  THEN hope that nothing super-horrible happens – oh….like breast cancer, surgery, radiation, 4 months of chemotherapy, 30 pound weight-gains coupled with estrogen-robbing medications on a long-term basis – and see how it feels to be happy you have thinning hair since you were previously bald as a bowling ball, happy to be alive but with relatively few sexually-motivating feelings, and partnered with another middle-aged human who struggles with his own middle-aged issues.  can we all say: OY.  i’m going to write an article and call it:  ‘my year without really good sourdough baguettes and white wine.’  i’m sure i’ll hear from carb-sensitive bloggers! 


too hot to handle

June 23, 2010

 

sorry for the lapse in writing.  got mini-clobbered by a 1st day of summer bug and between the 90 degree heat and the 101 fever (now happily settled into 99.5) i’m only writing this because i simply cannot lay in bed one moment longer.  shades of ‘lay there and be quiet’ while i tried to get through weeks of debilitating chemo.  ugh.  i am, quite literally, willing myself to be better – uninterested in one more day of this.  tomorrow my regular work life resumes.  well, at least for afternoon appointments.  with the aircon on in the car.  more in a day or two. …bean


how we see ourselves

February 24, 2010

 

do people have the ability to really see what is in front of them in a mirror?  a mirror is supposed to be a pure reflection of the object.  i think they don’t.  and by they, i mean me.  i have morphed and changed so much over the years.  i was a geeky bushy-eyebrowed teenager and then a lumpy college student with a swagger of sexual bravado that was all swagger and no reality and then turned myself into a hot (i kid you not…sizzling hot – even if it was the 80’s) jazz/cabaret singer.  with marriage came an agreement to attempt to be an equal earning partner and i slowly let go of the living-all-over-the-world prior decade and became the mom then music teacher then, finally, real estate broker.  even these past 10 years of part-time to full-time work in the world of ‘would you like to buy this house’ have been nonstop changes in my looks.  too much mac and cheese when teenage daughter was a baby led to a nice zaftig look that i gradually came to accept and, anyway, it was even my confirmation that i was here to stay as a wife and mommy.   zaftig tends to lead to heavier – and in my case it did.  why stop with 1 slice of difara’s pizza if you can have 2?  i didn’t. 

then breast cancer.  ironically, i slimmed down a bit during the chemo – uhhh…yeah.  couldn’t eat. and then the climb.  rather than be momentarily miserable (i’m bald, i’m bloated, i’m tired, i’m a victim of cancer, i’m not the girl i once was…) i ‘earned’ shoving anything and everything that tasted good into my mouth.  i deserve this apple tart.  why not eat this whole pizza…i may be dead next year.  after everything i’ve been through, you bet i’ll have another slice of that chocolate cake. 

one day i looked in the mirror and saw myself.  how odd that the lens sometimes comes into focus and that day i saw what other people saw and it was awful.  it wasn’t that i was heavy.  i actually don’t think i’ll ever be willowy or even ‘taut’.  but i was bloated and when i saw myself i thought:  i look like one of those people about whom i always think: there but for the grace of someone go i.   except there was no grace and it was me.   

slip forward 1.5 years.  i’ve worked hard at it…trying to change my lifestyle but not lose myself.  i do love food.  i don’t love exercise.  now i have food i love but not so much of it.  i don’t love exercise except that i make myself do it and i feel better afterward.  33 pounds and 2-3 sizes down.  i was feeling quite the skinny mini.  but then i went to buy some spring clothes and when i tried on ‘regular’ sized clothes…i looked heavy again.  i think i’ve gotten used to this size. 

does anyone have a different mirror i can borrow?


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