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


this is 54. (a partial list)

October 13, 2011

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.


instant gratification

December 13, 2010

 

i had quite an afternoon the other day.  facebook, the great social organizer, put me in touch with a high school classmate.  i found out that she had lost her teenage son, Michael, to a rare aggressive pediatric cancer in 2008.  as my daughter turned 16 and i walk my own path from patient to survivor, i reached out to give my belated condolences. 

michael was given one wish by “Make a Wish” foundation and he chose to use the money to buy age-appropriate electronics and then he gave them away to other pediatric cancer patients.    he formed the “Mikey’s Way” foundation and since his passing, his mom and dad have continued this work.  mike knew that many families cannot afford these items on top of their health care costs.  he also understood, all too well, that pediatric cancer patients spend an extraordinary amount of time laying around and the ‘leapsters’ to the netbooks to the nintendos to the portable DVD players help them cope with all the tedious hours of waiting during treatments, doctor’s appointments and hospital visits. 

 I had the very special opportunity to be at Maimonides Pediatric Cancer Center last week as Mikey’s Way gave away these electronics to over 25 pediatric cancer patients.  So simple in its conception and execution…Mike’s parents shop at stores (Mike’s dad told me that he IS that guy 1st in line at 4am waiting at ‘Best Buy” for the super-special deals on electronics!), then arrive with their own large rolling cart filled to the brim.  each child (and we saw them from age 2 to age 22) got a choice of age-appropriate gear and got to make their own choice.  Additional movies and games and batteries were supplied with each piece.  i wish i could say that i was of some help but truly, i just stood there and smiled.  if you thought being a cancer patient was sad, well, you never saw the kids i saw that day…and their parents. 

i acknowledge that foundations and charities are essential to helping out people with medical challenges in their lives.  but i also know the frustration with giving to them…they become expanding behemoth multi-armed well-intentioned monsters.  here was help in its most simple organized and helpful form.   donation buys product; product given to patient. 

Here are two ways to get your own instant gratification: 

1st:  Think about a donation.  You can read about Mike and Mikey’s Way here (donation widget on the main front page at top): 

http://www.mikeysway.org/index.html 

2nd:  Mikey’s Way is up for a Pepsi $50,000 grant and all you need to do is CLICK!  Click your mouse once every day until December 31st to vote for them so that they can keep doing this wonderful work.  Click!  So simple.  So much good!  YOU CAN MAKE A DIFFERENCE.   

 Here’s the link:  http://www.refresheverything.com/mikeysway  

I hope you bookmark the site and click once a day until the end of 2010 to help 2011 be a good year for a lot of needy kids. 

 Happy Holidays!   (Click!)  

 

 

You can share this post and spread the word by using the facebook widget below or post this link to your own blog with this link:   https://beanygetsablog.wordpress.com/2010/12/13/instant-gratification/ 


getting out of my own way

December 8, 2010

 

for some unkown bingey reason, i have purchased 2 pairs of black (what else) boots over the past 2 weeks and both of them make (my feet) look like i could kick someone’s ass pretty hard.  one pair are the penultimate italian over-the-knee leather with 2 rows of studded straps across the ankle and the other are ankle-high chic-motorcycle scruffed leather booties with super solid wide heels …the kind of boot you actually consider taking on some trip with you because they are so sturdy.  aside from the excess purchases (and, yes, they were both sale, discount or a combo of both) i wonder what is propelling me to want this ‘don’t mess with me’ look. 

i think the duplicate purchases are definitely me clutching about the ‘i want it now; i might not have later’ and it’s no mystery (i say now, post purchase) that yesterday’s very public passing of elizabeth edwards was upsetting to me in a general ‘oh shit…it comes back’ kind of way.  (upsetting too as i thought she seemed quite the honorable kind and strong woman.)  and the mri is tomorrow – a convoluted affair where i have to start at 34th street at my surgeon’s office so that her ex-oncologist nurse can install the heplock/iv into the acceptable left arm with it’s perpetually teeny veins that play hide and seek for the less-talented or less-experienced needlestickers out there and then, bundled up, hop in a taxi up to 84th street to my radiologist’s office to wait for my turn in the big mri machine.  must remember:  pepcid complete for laying flat on my stomach for the 40 minutes of loud clicking, banging and whirling noises in the tube. 

i went to help out with – although i did no helping – i just stood there and smiled – at an old high school friend’s ‘event’ where they handed out electronics to pediatric cancer patients – every one of which made your heart sing and break at the same time.  it just seems like i hear the word cancer no less than 79 times a day and more and more i feel closed in by it.  how to escape unscathed?  oh wait…i guess the horse left that barn a while ago. 

and, lastly, i think i’m trying to remind myself that i should kick my own very lazy ass into getting back to exercise…i’ve been much much much too indulgent and can’t seem to start back.  i always want the timing to be ‘just right’ but i should know better.  that isn’t possible. 

so….kicking my own ass.  i will take these boots and be done buying and start doing.  no more excuses. 


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. 


hello 53

October 14, 2010

 

i am 53 years old today.   that number seems inconceivable to me.  i still have the same goofy smile i had when i was 5.  honestly.  my husband says that when i smile, it’s not the sophisticated smile of a venerable adult but that i look like a kindergartener who was just told that cupcakes are being served for lunch!  i am the older mother of a semi-young child – ok, teenager.  i proudly announce my age on a yearly basis since almost-5 years ago, i didn’t think i’d be here to announce anything.  i have intentions of moving on in my aging but feeling that i can still change as i age.  and by change i mean for the better!  birthdays are funny things…and by funny i mean odd.  unless you tell people it’s your birthday, you don’t get a lot of feedback on it.  but i woke up this year on this day and felt very satisfied to be here and to keep working on my life.  now if i can just work on the trips i have in mind to greece, london and the isle of skye …well, that would be a change wouldn’t it? !  happy 53 to me.  hope you’re having a good day too.


ditch the pink

October 11, 2010

i love the health and wellness column in the nytimes.  here’s a great article about the marketing of breast cancer awareness month and the backlash to the pink brigade.   http://well.blogs.nytimes.com/2010/10/11/pink-ribbon-fatigue/  i wholeheartedly agree.  it’s all a little huggy-smuggy-kumbaya-ish and i have never actually liked anything pink.  i’m a new yorker through and through…all things better in black and some very fine merino flannel grey.  pink is smarmy.  smurflike. 

but above that, while i like the idea of having resources for breast cancer survivors and people going through cancer treatments, i’d like to see a little less ‘rah rah let’s all hug each other – and to do that we’ll create some big multi-armed creature that keeps begging for money to throw more pink parties for your self-esteem and needs more money to keep the creature fed’  and a lot more money going to research and getting information out to women and men about preventing cancer – breast or otherwise.  see my post just below this about dr. susan love’s army of women.   once again, i repeat:  be part of the solution.  join up.   and wear black.


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