i cried at the soho apple store

September 29, 2011

 

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.

Advertisements

it doesn’t matter who you are..

June 4, 2011

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. 
 

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. 


let’s make some plans

May 25, 2010

 

we are in the midst of playing the  ‘let’s make some plans’ game at our house.  for anyone who has ever faced a serious illness, it’s a bit of a dance.  i get close to it; sometimes i believe it; sometimes i discuss it to see if i believe it; or sometimes i can’t find the words to think about discussing it.  for some reason the period of 5 years was the magic number i was told for breast cancer survivors.  make it through 5 years and you’re past!  turns out, not so much.  maybe the doctors just have that amount of time in their agendas so that they can count you a success.  but i am constantly reading about people who say: well, the first time i was diagnosed 6 years ago…  my oncologist recently said to me: when you’re 90 i’ll consider you cured.  oddly, i appreciated her honesty but also the implication that she intended to get me to that honorable age.

ok.  that being said, i am creeping up on the 5 year mark – coming in late  october.  i have two 5 year marks.  late october 2010 for 5 years since diagnosis (‘the good news is that it’s garden variety breast cancer’ [yes…those words will haunt me forever…garden variety?  good news? ]} and late mid-june 2011 for 5 years post-treatment. 

with our teenage daughter finishing 9th grade and our car and kitchen both falling apart at the same time, i am being pulled into discussions of ‘let’s plan’.  and then suddenly, we’re planning not only the car and the kitchen and paying college but also ‘where will we be in 10 years’.  sometimes i have to stop myself from turning around and seeing if my husband is addressing some person behind me!  and sometimes, i play with the idea that i will be that person with plans for 10 years ahead.  i rehearsed it the other day, casually tossing off to a colleague that ‘we’re probably retiring to victoria, b.c. in 10 years.’ to see if it rang true to my own ears. 

so far, i’ve managed to plan 2 months ahead!  but i’m practicing for further. 


how much?

May 11, 2010

 

you would think that a person who has been through a diagnosis of a serious illness would have great insight into how to help someone else.  yes and no.  the hard part is when it’s a person you know but don’t know well.   ‘let me know if there’s anything i can do for you’ is, i know, a useless remark.  no one will ask for anything – and certainly not to such an open-ended remark.  

a person i know very casually had a test yesterday brought about by a previous test.  i have her email.  i sent an email to her telling her that i was thinking about her with positive thoughts and had kept her in my thoughts all weekend.  i know that the email has not been opened and i worry that this could mean bad news. 

i’m also skirting around a real but obnoxious issue that i often deal with:  the ‘feh’ quotient.  (think ‘spitting on the floor three times to ward off the evil spirits’!)   if she is diagnosed again what does it mean for me?  if elizabeth edwards was diagnosed again as a terminal patient what does it mean for me?  if lynn redgrave died – the incomparable lynn redgrave incapable of escaping this cruel fate – yes, you guessed it.  what does it mean for me?  i will be so honest here to say that i totter between my real compassion and caring and my worries about myself.  i don’t think i’m alone in seeing each diagnosis as ‘that could be me’.  there’s not a day that goes by that someone doesn’t say ‘cancer’.  hell, there’s not a day goes by that i don’t hear it at least 10 times.  it’s big business; it’s marketing money for for-profit and charities alike; it’s so common and i want to scream that i want a day, a week, a year without hearing about cancer.   there are days when i could just forget that any of it ever happened and i am never allowed to forget.  i know.  never forget so that we can build forward.   but some days i just want a vacation from the ‘c’ word.  and yet, i worry…about this woman i know…she had a test yesterday…i haven’t heard from her. 


what if?

January 15, 2010

oh yeah.  what if?  what if we had a catastrophic year ahead?  what if teenage daughter broke her leg?  what if darling husband needed surgery?  we spent the last 3 weeks agonizingly dissecting the what ifs?  and one what if went unasked.  out loud.  what if i get sick again?  what if my cancer comes back?  what if what if what if.

the what ifs have been keeping me up at night.  we have been forced to ask because we are in the odd and dark world of trying to change our health insurance policy so that we don’t drown under the burden of purchasing it.  last year, we shelled out $2,000 a month for a ‘family’ policy (no one gives a shit that i only had one kid…i felt like someone should have been servicing my cat for that price).  we’re both independent contractors and all of my doctors were/are on oxford freedom plan.  none of them took oxford liberty – let alone other plans.  you could almost hear the secretaries hold their breath when the answer to what policy i held was: oxford.  before i could barely get the 2 syllables out of my mouth came the answer:  “we only take oxford freedom!  we don’t take oxford liberty!”  (you could hear the !!! ping at the end of each short but meaningful sentence.)  and 4 years post breast cancer diagnosis is not a good time to change your entire medical team.  so we have made concessions in order to remain with our oxford freedom policy.  but the financial burden became unbearable when, in december, i was told that the new monthly fee was $2,500 a month.  it was the absolute point of impossible.

and so we figured out some stuff.  we formed an llc – because we found out that having the company allows us to purchase a small business policy.  and then we went on the hunt.  insurance brokers; talk of hsa’s and hmo’s and out-of-network payments including deductibles and out-of-network payments excluding deductibles (i’m still a little fuzzy on these two but darling husband seems to have a handle on it.) 

my year has a set rhythm to it.  10 doctor visits are, essentially set.  and all are in-network.  3 major procedures (a bilateral mri, sonogram and mamogram) all of which are, for me, out-of-network.  but many of these plans cost a significant amount and then you keep paying in in-network deductible…many of them set at $2,000 more a year.  out-of-network deductibles climbing easily around $5,000-$7,000 more just for me.  my radiologist is out of network and she’s amazing.  caring, careful, loyal and very very good at what she does. 

my husband deserves a medal.  he waded through manila envelopes filed away in our basement trying to assess our past costs.  it had to be a nasty trip down a nasty memory lane to look at receipts for steroid prescriptions that made his wife stomp around feeling like her skin was coming off or the 4 different anti-nausea meds receipt gathered in everyone’s desperate attempts to get me some medication that worked to stop the nonstop hurling after the chemotherapy sessions.  and he kept going.  he added up numbers and crunched everything upwards and downwards and kept calling people who i would have hung up on but instead coaxed out answers that weren’t always immediately clear. 

in the end, we’re finally ready to make a pick.  a bit of an old-fashioned chinese menu:  one from column a and 2 from column b.  mine as a single with the best benefits and the lowest out-of-pocket payments and them together on a parent and child policy where we’ll be ok as long as neither of them go too far out of network.  or need major surgery.  i can’t help but feel that my worst fears are coming about:  as a family we’re not all together.  i’m once again by myself and husband and teenage daughter are tethered to each other.  i know that’s not really the case – but it feeds into all my old feelings of sitting by myself while the world just kept revolving and going on without me. 

what if?  what if?  what if?  and, for that matter, what if we couldn’t afford any of this?  so many can’t.  i mean it’s starting to really tax the system here (and by that i mean we’re struggling to pay it all out) but what if we couldn’t at all?  and the cat still has no health care.  what if? 

 


%d bloggers like this: