Sunday, May 23, 2010
So---13 days and no son to look after. I fall into a heap for a day or two---constantly emailing and calling to see about the bone cancer results—but nada till two days later when it comes back- NO SIGN OF BONE CANCER. HOORAY !! I’M A HAPPY CAMPER. I try to think of who I can call with the fabulous news that the cancer hasn’t spread to my bones. Ah. No one. Funny thing about being single. There’s no significant other to give a fuck whether the cancer has returned or not. And of course one tries to NOT carry on about it all with one’s poor kids who have been put through enough I think..
And YES says the assistant to Dr Glaspy, responding to one of my emails, I should now have a bone density test to check out the current state of my bones since Arimidex will rob them of whatever it is that makes them strong and actually GIVE you osteoporosis if they’re in any kind of weak state.
Oi vey. But when I go to get it over and done with two days later, it’s such a doddle compared to the bone scan that was checking for a cancerous tumor in the bone. Ten minutes and I’m done. What a breeze.
But what must really be attended to if I am ever to walk out of the house again and engage in any social activities is vile ratty blonde brittle stuff on my head that is meant to be passing for hair. The fringe is all breaking off in big pieces and I can think of nothing to do but appear yet again at the hairdressing joint that used to tend to my lovely long straight ‘sunkissed’ locks where the clientele is so youthful and healthy that chemo-ravaged hair is a tad on the wild side.
“What ‘appened to you love? asks the British owner who thinks he's as cute as Jamie Oliver but ain’t …”Let me guess - a perm gone wrong and now you started cutting it off yourself?”
‘Um, no, I had cancer, remember, and it all fell out. And then, when you were on holiday, Sally dyed it blonde.”
He clearly has no recollection whatsoever despite always remembering to tip him. Half-witted bastard. Much to his horror I break the news that we must go back to the color that had first sprouted from my bald head and indeed the color that is now on a good inch of roots---an odd shade of dark poo brown. But I must ‘own’ it – that’s my color and perhaps it will feel better in its natural hue and stop acting like a crack baby jutting out in all directions and making me look like a mad woman who can no longer find the time to groom herself. It bears very little resemblance to my once soft and manageable totally dead straight hair. It’s hair from another planet called Chemo and it’s the unmentioned booby prize you get.
He claims, clearly lying, that he has an emergency client to tend to and some gloomy apprentice is assigned to me – clearly in the hopes that I’ll never darken their doors again. She does the job with something less than enthusiasm but at least there’s no phony ‘oohing and aahing’ once it’s done. This is not a look they want to promote and I’m surprised I’m not ushered out a back door. I slink out of the salon a broken woman –no more the ‘gay carefree blonde’. It’s silly—and deeply shallow—but hair color can cheer you up or depress the shit out of you.
From that day on I stuff a hat on my head pretty much every time I walk out the door. I try to forget I even have hair and I really see for the first time how someone can let themselves go…..over a week goes by and I don’t even bother to wash it. It’s so dry and unhealthy that there’s no need and I actually feel nostalgic for the good old days when it was greasy and vile after just 24 hours.
So with the teen in Italy there’s no longer the routine of having to drag him out of bed every morning -a daily ritual that begins with my iphone playing the blues at 7am whereupon I literally drag myself up, enter his room, shake him a few times, ask for a verbal response to ‘YOU AWAKE NICK?’ and then turn on his heater so the darling won’t be chilly when he gets up. I then repair to kitchen to make his lunch and get some tea and then I run back to bed till two more ‘snoozes’ have been pressed on the iphone then I pop back in a carefully-timed 18 minutes to give him morning pills and vitamins. This time he must actually sit up and swallow the pills and I make sure the little blue Adderall is not dropped into his pit of a bed so that hopefully the speedy effects of this actual amphetamine I give child for his ADD will crank him into action. Then I rush back to kitchen and prepare one of his Top Three breakfasts—soft-boiled eggs and toast ‘fingers’ – thus named because the toast is cut thin enough to dip into the runny yolk and then straight into mouth—OR fried bread dipped-in-egg OR three Weet Bix and honey, milk and some berries. And yes, I lurch into his room with breakfast and he eats in bed. And then, a five minute insane dash to get dressed, load his backpack and run down to the car. (He bathes at night)
Ludicrous behaviour on my part? Undoubtedly. But it actually forces me- an unmitigated sloth of a morning, to get going and if I don’t do it this way, he’d be happy, as oft has been proven, to go to school on an empty stomach. I feel the least I can do, having failed to find a Prince Charming who would marry me and happily become father to my child, is send him off to an institution he loathes, with a bit of sustenance in him.
But without Nick around I sleep in to appallingly late hours and my body clock immediately re-sets to its natural rhythm- which is to stay up till 1 or 2 or even 3am and sleep in till 11.Or later. I’m not proud of it. My need for endless sleep (a good 9 hours which I never get) has been the bane of my life and even more so since cancer came knocking. But on the fourth morning I must drag my weary body up at ungodly10 am to go back to Dr Charney who has the results of my Complete Hormone Profile. They’re not good. It seems my body is ‘breaking down’ faster than its ‘building up’ and she patiently shows me the four pages of results trying to explain anabolic versus metabolic and the colored graphs and charts. I’m never in the good zone and bottom line is my adrenals are shot, I’m not in good shape and there’s a reason that I feel so staggeringly awful all the time. (Like I might have had some actual fun and am in the midst of a permanent truly shocking hangover.) We briefly discuss the dreaded Arimidex that I’m taking. She’s not a fan but legally cannot tell me what to do as she’s not an MD. Se suggests waiting for the Bone Density results.
She also gives me fairly costly supplements (and advises I throw all the crap I’ve just stocked up on from Trader Jo’s) and that I should try to eat really well, exercise or do yoga, meditate and above all try to de-stress. The last suggestion seems utterly impossible given my dire financial straits and it seems to me that the odds of getting actual paid employment, despite sending out countless emails, are terrifyingly slim. How exactly does one de-stress I ask her, when I was last paid as a writer/director in the Stone Age, when I have no pension plans, no Life Insurance, no savings and …okay, I remember in the nick of time she’s not my therapist and promise to return 2 weeks later for a detoxifying far infra red sauna.
So, feeling worse and worse and with more aches and pains as each day goes by, and convinced it may be due to the Arimidex I email Doc Glaspy’s to get the bone density results. After a week still nothing. I call and am told there are no results because I did not have the scan. I convince them I was not imagining yet another deeply tedious trip to St Johns and could they please check again.
I receive an email the next day from my oncologist. “Your bone density test was a baseline. There is no result. It’s for comparison in a year to see if you are losing bone.”
No result ? When I tell Clara Charney this she has her assistant call and insist on results being faxed over immediately. Shockingly, it gets done. Guess what? There is a result. There’s two pages of results. I HAVE OSTEOPENIA. It’s a THINNING of the bones, a lower than normal bone mineral density—the PRECURSOR to osteoporosis- or as one expert I googled said simply “Anyone with osteopenia is on the road to Osteoporosis.” I am so upset with the good oncologist.
Why tell me there is ”NO RESULT”. He is asking me, someone with thinning bones, to take a drug where the MAIN SIDE EFFECT IS BONE LOSS. What other effects are not yet known as then drug is relatively new and thus hasn’t been round long enough for the full story to come out. And in a year, when my bones are even thinner and osteoporosis may be setting in, Dr Charney says the likelihood is that I would be given Fosomax which apparently makes it appear that your bones are building up again but it’s a false reading as its just rotten old bone which then shatters rather than breaks. She admits that if she WERE ME, she would NOT be taking the Arimidex but keeping a close check on estrogen levels and doing everything else in my power to stay healthy.
It sounds so completely sound and sensible as I walk out the door. Skip the poisonous Big Pharma drug and stay healthy the natural way. But the darndest thing happens by the time I’m home. My new pal Mr Fear has a word in my brain.
What IF pain and aches and osteoporosis is the price I have to pay to stay healthy and cancer-free? (BECAUSE, if I was a rabid conspiracy theorist, anyone with an answer to cancer has been drummed out of the business, sued till they were on their knees – or threatened with death as the beady-eyed Vitamin Section clerk at Erewhon told me yesterday as his eyes darted hither and thither to see who was spying on us before he furtively went into a corner and wrote down “ROYAL RIFE” in caps on a post-it note. “This guy invented a cure for cancer in the forties but the drug companies had his medical license taken away. Look it up on the internet. There’s a guy here in LA who has made the machine. Come back when Megan’s here and she’ll put you in touch.” I’m ready to believe anything at this point but when I google him up, the guy, who still has some followers, does SEEM to have been a total nut job. I just need to ‘man up’ and make a decision about this drug.
And speaking of men, it sure looks like something close to a man walking out in the airport lounge as my boy, not yet 15, appears back on American soil after his 16 day trip to London and Italy. I’m thrilled to have him back. Routine again. Breakfast in bed for the sleepy teen and nagging about homework by night. I missed it.
And suddenly, like a bolt out of the blue, I realize that it’s been weeks and weeks since I got out my trusty Rite Aid phone card and called my oldest friend in the world in Melbourne who’s been desperately ill with pancreatic cancer for well over two years. Her dear husband Graham answers with panic in his voice “So you’ve heard? ”
“Heard what?” I ask as my stomach lurches violently and I wish to God I wasn’t such a selfish bitch who’d forgotten to call.
“She’s not good. She’s back in hospital and she doesn’t know anyone. The doctor took me aside me today and said “Well this is it. Brace yourself.” he confides, his voice breaking. I want to scream. I feel like I’ve been punched in the stomach but utter the usual platitudes about how deeply sorry I am to this man who has said, in the past, that if she dies he’ll go off somewhere and never been seen again, ending it all. They had no kids, just two divine dogs—a dachshund and a Labrador and after falling in love with her in their early twenties, they rekindled their affair twenty years ago and have been together every day since.
I call Graham the next day, much earlier. He answers quickly again.
“Hi Lindy, have you heard?” he asks, his voice quite calm. My hopes suddenly soar. Perhaps the antibiotics have cleared up her lung infection, she’s snapped out of it and soon I’ll be having a good ol’ natter with Mand again.
“She died at 4am this morning. It was very peaceful. I talked to her all night. The doctor said that hearing is the last thing to go.” It’s just too much to bear. My oldest friend, the girl I met in first grade and have been so close to for fifty years, is gone. With pancreatic cancer that spread to her liver and lungs, it’s not surprising but it’s utterly devastating. This is Monday and the funeral will be held on Friday at St Andrew’s church in Middle Brighton, the local church that was associated with Firbank, my Church of England Girl’s Grammar school. The church we attended for Easter and Christmas services, the church where I was confirmed, where my brother got married, where I’ve been in recent years to endless funerals.
As I’m researching flights on Expedia to see just how much it would cost to get there, I realize that it would mean missing my daughter’s Final Art Show and graduation from Otis College. I just can’t do it. I make constant calls to Graham and my cousin and other old friends, weeping as they tell me that they’ve decided on the church music – John Lennon’s ‘Stand By Me’, Dusty Springfield’s ‘You’ve Got A Friend’ and Rod Stewart’s ‘You’re In My Heart’. Heavy-hearted, I decide to write something that will be read by my old pal Meredith.
“Nine two seven double six Oh (927660). I know those numbers as well as I know my own birth date. It was the number I called every morning at about 8.30. Just two rings and then I hung up, ran out the door and jumped into the old grey Vanguard with mum at the wheel. Off we shot, usually late, mum driving like a bat out of hell, to the top of Grosvenor Street to pick up my best friend who, almost certainly, would NOT be waiting there as planned. Mum would toot the horn, whereupon Mr Zach would appear, give us a harried wave or an exasperated shrug and then finally the wildly witty, whipsmart whirlwind that was Mandy Zachariah would fly out the door, grab the blazer and school hat Zach was holding out like a valet, and run to the car. In her hand, freshly-ironed green hair ribbons- as was de rigeur Firbank dress code- which she would tie around her plaits as we headed to school. Sometimes, if I begged, she would put her hair into a single plait and give one to me, her ribbon-less pal.
IN later years, if we had time, we'd head straight to the toilets next to the tuck shop and light up a quick Alpine as we'd suck on a Steamroller to hide the smell and chuckle at the thought of her big sister Sue, the school sports mistress, catching us in the act. Bizarrely, we never got caught. But we did get caught for many other misdeeds that generally involved the passing of notes and us laughing so hard and hysterically that we were in danger of exploding and we would be sent out of Assembly, or out of Divinity Class--or pretty much OUT of any class you can think of- on a fairly regular basis. We were easily amused but it's not a bad habit to have..
We were part of a jolly--and I'm afraid I must boast, a VERY cool gang that included my dear cousin Jane Parkes, the mischievous Meredith Walsh, Nicky Dearie, Sue Fooks, Jenny Pullman, Vickie Britten, Paula Kane and Julie Sturrock. Once we were too sophisticated to climb the Broken tree or play horsey by hanging onto the overall strings of the other girl and screaming "Giddyup", once we were way too old to play Skippy or Hoppy--we would lounge around on the oval, seeing who had the shortest uniform, who had the brownest legs, how good Lizzie Putt's hair looked, what we were going to wear to Dancing Class and how most of the Prefects were annoying, tell-tale goody goodies.
Mand and I would walk home to her place where her mum Joan would feed us huge thick slabs of fresh white bread slathered with butter, sliced bananas and white sugar which energised us sufficiently for a strenuous, shoeless dance session in the living room. Mand , ALWAYS a great dancer, was desperate to get on the TV show Kommotion and so sheds pop on a 45 and we'd get down. Mand had a lot of great moves that left me for dead. The SWIM and I think something with a lot of head tossing called the Pony. We were pretty even when it came to Chubby Checker and the Twist- though we'd often collapse with a stitch after our massive snack.
Friday nights Mand often made a beeline for our place as she was very partial to the delicious Pine Burgers and chips that dad would bring back from the joint on St Kilda street opposite the yacht club. He'd often bring Minties and Jaffas too. We'd lie back, eat our Pineburgers, watch black and white TV- happy as clams. Then we'd go and practice our Twiggy-like eye makeup. Big black crease lines, white highlighter under the brow and for Mandy, who already had those great big brown eyes, painted-on lashes underneath. And very pale pink -or white lips. I told you- we were cool.
Then on saturdays, Mand often joined mum and me on trips to Church Street to look in the shops. We were mildly obsessed with the aforementioned Dancing Class outfits. To my amazement, Mrs Zach would actually whip up a dress on her sewing machine for Mandy in a day but after a while, Mand despised them and insisted on store-bought dresses. But she did already have her first pair of heels, in gorgeous white patent leather - and I was now on a desperate mission for heels too. Mand had spotted a pair in brown-with teeny-tiny one inch heels and a very cute bow. They were called Teena Dolls. They fitted to perfection and would match, as Mand pointed out, my itchy brown wool dress. We found mum and dragged her in but she was underwhelmed and refused to buy them. All the way home I whined on and on about the Teena Dolls and even the loyal Mand tried to convince mum that the Teena Dolls were a must. But with Mand in mid-sentence, she suddenly lost it, took the Peter Stuyvesant out of her mouth, turned round and screamed 'I'LL GIVE YOU GIRLS A TEENA DOLL!!!"
Well Mandy just thought that was one of the funniest things she'd ever heard and started to shriek with laughter, turning the disappointment into hilarity. Even mum, who adored Mandy, was soon hooting with laughter too.
Now, it's a silly little anecdote BUT it pretty much sums Mandy up for me. She had the most brilliant, infectious, finely honed sense of humor, with a wonderful appreciation of the absurd and for the NEXT FORTY YEARS, on many different continents, she would suddenly, out of NOWHERE, shout very loudly " I'LL GIVE YOU A TEENA DOLL!" and we'd laugh and laugh and laugh.
She always made me laugh. Her charisma and intelligence and love of a good time made her such irresistably good company. Whether it was down at Lorne discovering a fabulous band called The Groop with it's gorgeous lead singer Ronnie Charles- or hanging with Meredith at Bev and Nick Walsh's house by the beach in Angelsea or having a BBQ in the back garden with Zach and Jane at Airie's Inlet or sneaking into Molina's Pub on Church Street with Jane and hoping not to run into brother David who didn't approve or getting ready to head off to Dancing Class and trying to ignore the teasing of big brother Richard and his pals....whatever, wherever, it was fun with Mand. A sweet, kind and empathetic friend, she was generous to a fault and a bloody good journo, as well as a devoted wife to the wondrously sweet and adoring Graham whose wicked sense of humor and brilliant wit meant a match made in heaven.
He's also been one of the most caring, darling husbands on the planet. A fantastic bloke. They don't come any better.
When I suggested that Mand’s dad Mr Zach would like the Classic where my dad was living, I was thrilled when it all worked out as I got to see much more of Mand and Graham and all the Zachs...but it never felt enough. I adored hanging with Mand. As did SO MANY. There's a reason that she had such devoted friends and her dearest sister Nane around her till the end.
She was the life and spirit of the party. She liked to be happy, enjoy life with a lot of white wine and have an excellent time. She wants us to be happy and THUS, we must honor her wishes and try bloody hard to go on having a good time.
Love you Mand, my darling friend of 51 years and I send my love to everyone.
My cousin Jane calls at 3 am friday morning (Melbourne is 19 hours ahead of LA) to tell me that the funeral, amazingly, was not really sad at all. A huge turn-out, lots of laughs and a tremendous tribute to a darling girl. All the clichés in the world flood my brain as I sit up in bed, crying yet again and talking to my dear cousin. Seize the moment. Try to find the joy. It’s all over soon enough.
Twelve hours later it’s time to get ready for my darling daughter’s Final Art Show down near the airport at Otis. I haven’t seen her this excited since ….well I don’t know when. She and her fellow graduates have been slogging away at Otis for weeks- till the wee small hours cleaning up their grubby, chaotic studios, repainting them and turning an entire floor of the building into pristine, professionally snow white galleries to show their work. Now she runs round the house, getting dolled up and without warning, trying on her cap and gown for me to see. I hadn’t known she even had the outfit here and as she spots tears springing to my eyes, she quickly whips it off and tells me to ‘get a grip’ before proceeding to work on her outfit for the evening which invariably means trying all manner of cute, glam, sexy outfits before opting for her much-preferred laid-back look.
These days, it takes me a full three minutes to get ready. Black pants, a jacket from 25 years ago and a hat. Who knew one would feel nostalgic for those heady times when clothes were thrown around the bedroom as one frantically got ready for a date or a party? Hands up who’s even has been to a party lately…
So soon we’re hurtling in witty Friday evening traffic with our dear friend Tim Curry to this place of learning where my darling has been closeted for weeks, months, years. And I’m as happy as I’ve been in a long time. And soon, about ten feet from LAX, we’re at Otis College---and we’re rushing from fabulous room to room and she’s pointing g out her work with a giant grin on her face and greeting people and being charming and standing in front of her work for her deeply annoying camera-happy mother and I’m not getting the clear shots I want but it’s okay and she’s gone and we’re trailing behind as she points out the three gorgeous watercolors … and then there’s the truly beautiful installation she’s done of stunning crystals that won the Juror’s Prize last night and next, three giant drawings of sumo wrestlers that are so fine and beautiful my heart is just bursting.
…..Oh my goodness and here’s the infamous and electrifying knife installation—all manner of shiny, luminous, sparkling knives and right at this moment her father appears and ever the joker, loudly insists they’re all his missing knives and makes to start pulling them out …and so it goes with friends and ALL her extended family all appearing which includes one mother plus her two stepmothers, her dad, her half brother and sister and even Nick Hobbs and a school friend are soon seen casually strolling in, having just arrived back from a school trip to Washington DC. It’s a great night and I just love her work though the fact that someone has decided to put names of artists on a list at the door and NOT next to the work itself is, in my humble opinion, moronic.
And on Sunday morning we are back at Otis as my dearest girl- totally ‘rocking’ the glam/professorial look in cap and gown, dark red lipstick and a stunning gold sash that signifies she is graduating with Honors – a minor detail she incredibly modestly just happened to tell her mother last night. And it’s the picture-perfect graduation you see in American movies, the first I’ve ever been to and it lives up to the build-up with a fabulous procession of faculty and students, rousing speeches and all the appropriate pomp and circumstance. I’m in a muck sweat, standing on my chair trying to work out whether I should use my new Canon bought specially for the occasion to just photograph or video the moment her name is called and she walks on stage. At the last minute I opt for video and run half way down the aisle and fight my way through a throng of similarly crazed parents so I can really capture the Kodak moment. It doesn’t disappoint. She glows and I am just the PROUDEST MUM EVER.
Moments later, as caps are even flung into the air-like in the movies, I realize I’ve done something very right. I have an outstanding, wonderful, sweet, kind, clever and talented daughter. Her beloved mentor – one of the best sculptors in America- the late Robert Graham who she took a year off college and worked for, transferring from Chicago Art Institute to be at Otis close to Bob’s studio in Venice, would have been SO utterly delighted and PROUD of her too. Congratulations Lola darling. I love you so much.
And the graduation gift from her mum? Not very thrilling. Not a groovy vintage 'woody' Le Baron car. She bought one herself a few weeks ago. Not a stunning new wardrobe from Barney's or a trip to Prada or even a holiday in France. Nope
A 2 month Kaplan course to study for the LSATS—so she can go to Law School next year. ‘No dough in art’, I keep telling her in stunningly philistine fashion. ‘GET A LAW DEGREE BABY!!! (Check out my first VIDEO at bottom of page--Lola graduates!!)
Tuesday, May 4, 2010
Okay—back to the pressing question of “Do I take the anti-cancer drug Tamoxifen for the next five years or not?” Yet again one feels very much alone and somewhat abandoned since –well put it this way-- God forbid there could be any CONCENSUS OF OPINION ABOUT TREATMENT WHATSOFUCKING EVER !!. These days I think of doctors like face creams—most are expensive and full of shit. Which one do you trust ? Total crapshoot! As for the insurance companies …not unlike an expensive matchmaking company I checked out a couple of years ago when I first arrived back Stateside (I love that silly expression- so outré but am citizen –can say what I like) from Melbourne. At the urging of a friend I went in for a consultation, lied about my age and worried desperately that I looked old in the nasty sunlight streaming through some dull conference room in a tedious Century City high rise. Point being—they asked way too many personal questions, had countless nosy forms to be filled out, were refusing to guarantee anything AND WERE asking for A TON OF MONEY.
My original oncologist—the one who looks like Morticia with her perfectly groomed long black hair and suits and high heels , has said that I need to start the anti-cancer drug, Tamoxifen. She’s the one who half scared me to death with her dire predictions of what would happen if I did NOT have chemo (and yes, I immediately SIGNED UP for it because I was terrified and my daughter was in the room softly weeping and I knew no better, too panic-struck to do my homework and waste another minute waiting for appointments with other specialists.)
Two months ago she told me to start Tamoxifen right away. She claims that somehow it will reduce the ‘original risk of recurrence’ by 75%. The good oncologist definitely favors the BIG statistics which are confusing and according to Ralph Moss, the famous cancer researcher, misleading and not remotely ‘honest’.
BUT, I try to do my homework these days. I have a friend Carrie, diagnosed just a few months ahead of me, who had a very similar breast cancer profile though she went the radiation route. Before the surgery I call up to see how she’s doing and she tells me that she’s taking not Tamoxifen but a newer drug called Arimidex.
We have the SAME oncologist. So I email the doc asking why she didn’t prescribe Arimidex for me. I wait a few days, email again ---but NOTHING. I have noticed now time and time again that doctors are not very partial to questions asking them about their opinions/actions. TWELVE days later she finally responds to my third email and says she thought she had already responded and promises to check my records. Hmmm. Wildly unacceptable. Two days later she emails that she has phoned through a prescription for Arimidex instead of Tamoxifen. In other words, she had MADE A MISTAKE but HAD NO INTENTION of admitting it or apologizing. Not happy Doc. Even unhappier when I hit Rite Aid the next day to collect my anti depressants. My Arimidex are there too. IF I fork over $320 since I’ve not yet met my Anthem Blue Cross deductible. I tell them “no thanks’.
So I go to see Dr John Glaspy- the oncologist at UCLA.
I had imagined, and hoped, that since he pooh-poohed the chemo when I first met him and inferred that I HAD JUST POISONED MYSELF COMPLETELY UNNECESSARILY with it, he might just say take some DIM (broccoli extract pills that health gurus are very high on) and live your life---but no, I discover that he is a big fan of Arimidex and he says there’s NO question about it – Arimidex is the way to go. And if I’d gone to see him after first discovering cancer, he’d have suggested Arimidex INSTEAD of CHEMOTHERAPY since it’s his firm opinion that it staves off a recurrence far more effectively than chemo and that that is ALL he would have given me. (But I didn’t hear of him till after chemo was over and thus it was too late.)
Yes, he admits, it can cause bad joint pain on account of it squeezes very last drop of estrogen juice out of you---but he says NOT everyone suffers the join pain and you’ll know in about a week. He finishes by saying that I have a 10 % chance THAT THE CANCER WILL RETURN but if I take Arimidex it will be cut in half to 5%. And following the unwritten rule that the longer you wait, the quicker the consult, he’s gone in five minutes.
I now have a 10% chance the cancer will come back? But when I first went to see him for his opinion about surgery, he’d promised that a double mastectomy would reduce my chances of recurrence down to well under 2%. I loved his conviction and his adorable smile. I had been warned and it was a fact. He was Mr Charm and he even seemed to like women. There and then I made the fateful decision to go ahead with the surgery. I even went back with my dear pal Richard and he repeated his opinion once more. Never once mentioning that I would then need to take a strong drug for five years.
So I email and ask why the number has risen from 2% to 10% in just seven months. It takes a couple more reminder emails before he finally realizes I am not letting it go and his response, just a tad patronizing, finally arrives stating that “there is no difference between these two numbers. 2% and 5% are the same number” he insists. Well fine. I get it—they are just statistics. But it has gone from 2% to 10 % according to you--not five, so just stay CONSISTENT for fuck’s sake. CLEARLY, BEING TOLD THE DOUBLE MASTECTOMY would lower recurrence to 2% or less was pretty PERSUASIVE. So again---do me a favor and don’t be so cavalier now. I listened to you—put my trust in you, had the double mastectomy and endured all the crap that followed. Maybe I should have listened to Morticia, skipped the double mastectomy and just opted for radiation.
As I am waiting for his email response, I decide I should seek another opinion and go to see Dr Watson, the gyno/wholistic doctor in Santa Monica, who gave me Vitamin C infusions during chemo and the staph infection phase to build my immune system. She says “Weeeell, Arimidex will rob you of those precious estrogen elements and leave you dry as an old pile of sand up THERE. You could take the DIM”---or, she muses, as if this really might appeal to me –“What about just taking it two or three times a week..? You’ll still be getting a dose but not the full one.”
Excuse me? This seems like odd advice. I’m all for alternative but her complete lack of conviction either way doesn’t strike me as the best way TO FIGHT SOMETHING LIKE CANCER which has defied a CURE from smart folk around the planet for a good SEVENTY or more years.
I mean how does that work? Take it on Tuesdays and Fridays? Or just when I remember to do so? And does it mean that because of my MASSIVE AMBIVALENCE ABOUT ANTI DEPRESSANTS, I should start taking them every third day –or just on high days and holidays?
“NOT HAPPY, DOC! “ I find myself wanting to scream from the rooftops, a la William Holden in “Network…”NOT HAPPY!!”
Now this ‘due diligence’ all took place BEFORE my surgery on March 11.
About five days after the surgery I’m still wondering what to do and decide it’s time to go higher up on the alternative chain so I visit Dr Charney, my lovely naturopathic/muscle testing doc on Robertson says “OH NO…let’s do a Complete Hormone test this week to see where your levels are and then we can determine how to proceed and if you do take the Arimidex (which she is open to) then at least we can see what EFFECT IT IS actually having on your estrogen levels”…Makes sense to me.
And I have faith in her. Not only is she incredibly informed and able to explain cancer and its progression well but she was testing Vitamin D levels – all the rage now- and giving it to people four years ago—as was Dr Watson—so basically you can assume they ‘re about four years ahead of the curve and in a few years even oncologists will be doing Complete Hormone Level Tests to get a sophisticated and accurate level before proceeding with drugs that can leave you with brittle bones, osteoporosis and a dried-up fanny.
A word of warning –Do NOT bother to check the Arimidex website. Firstly it will SCARE THE SHIT OUT OF YOU with its list of about 900 side effects---everything from bone loss and joint pain to depression, weight gain, blurred vision, nausea, chest pain, swelling, insomnia, nausea, racing heartbeat and yet MORE hair changes. Whoopty doo---MORE hair changes.
This dull big Pharma website then proceeds to treat we cancer folk who’ll be helping ASTRA ZENECA get RICHER and RICHER (they’ve made well over two billion bucks so far)as if we’re sub-human simpletons and under the heading “HOW TO COPE WITH BONE LOSS” suggests that we ‘consult with a doctor before starting a regimen of walking.’ You got it! I would never take a stroll without consulting the medical profession first.
It gets better. If you’re suffering from WEAKNESS OR FATIGUE, they confide that you might want to try the very novel concept of eating nutritious meals, plenty of water, and restoring your concentration with a little gardening!!
No, no. That’s not all !! They then generously share yet more nuggets of riveting, life-changing information. Here’s one. Wait for it…..It suggests that when the drug’s side effects have left you wimpering with exhaustion, barely able to move a muscle, you should try to ‘PACE YOURSELF.’ And if that doesn’t do the trick, and you’re still unable to get out of bed or think straight–then their cunning plan is to either ‘ask friends for help’ or ‘RESCHEDULE YOUR ACTIVITIES’.
They stop short of suggesting that perhaps the NEGATIVE side effects of the meds are perhaps outweighing any benefits and that you might try to STOP taking them!! FUCKING BIG PHARMA FUCKS.
Oh no wait, I’m sorry. They do take pains to say that if you’re unlucky enough to have NO health insurance to help pay the $400 for the 30 pills you’ll need each month, you can try to contact them to ask for financial help. Good luck with that.
So I take the pee test for the complete hormone profile and send it off and the plan is that we will wait for the results Dr Charney and I will CALMLY decide TOGETHER if I should take this cancer drug or not. Yes, good to have a plan.
And yet ..and yet…like the best-laid plans, it’s doomed. . Two or three nights later I wake up with serious pain in the middle of my back. I’m not imagining it. Three Advil have no effect. Two hours later I take a Vicodin. The pain continues and then I lie there, silently weeping. I know what’s happened. I am convinced of it and the idea that I won’t see my daughter’s children or be there for my darling fatherless son is just excruciatingly upsetting.
For a start, because of all the surgeries, I realize that about 6 months have been wasted when I could HAVE been taking the Arimidex. Re-reading Astra Zeneca’s Website for Halfwits again the next morning, just confirms my fear…
“During surgery, doctors try to remove as much cancer as possible. Still, it is possible that some cancer cells may remain in your body and could continue to multiply. Recurrence is the term used to describe the return of cancer following primary treatment (for example, surgery), either in the same place as the original tumor or somewhere else in the body.”
… Basic, simplistic stuff---but for anyone who has been diagnosed with cancer, they are HORRIFYING WORDS….I decide it’s a good bet I’ve given some of those stray cancer cells a REAL BREAK by not being on the drug and that WITHOUT A SHADOW OF A DOUBT, it’s growing up a storm. As soon as I get home from dropping the teen at school, I email Dr Glaspy and simply say “I‘ve had a lot of back pain and am worried I may have bone cancer.”
I’m relieved to report that this email attracts a very speedy response and just two days later I’m at UCLA having a full body scan.
Tightly swaddled in sheets to stay warm, even my feet are taped together so they don’t move at ALL. The full horror of thrusting myself into this alien universe where only dangerous rays-killers in themselves- can detect the dreaded bone cancer hits home and any moment one expects some scary drugged-up Dick Cheney look-alike radiologist to appear who will absent-mindedly ZAP me with double or maybe TRIPLE the dose—as they recently discovered was occurring for---ohh, let’s see—about a year and a half with incorrectly-programmed machines at Cedars Sinai .
As the gurney starts its journey, I’m tempted to do a runner but the NEED TO KNOW is fairly strong. I stay put and shut my eyes, only opening them when I’m sure about twenty minutes have passed and I should have entered the tunnel and come out again. But no, I AM fully ENCLOSED and the top of the tunnel is just about three centimeters from my eyelashes. FUCK! Adrenaline-pumping fear floods one’s body despite the warnings and even knowing in advance from last time that claustrophobia is inevitable and deeply unpleasant. But I try to think of worse things that could be happening. Like water-boarding.
No actually, I tell myself not to be a pathetic whining wimp and think about people a THOUSAND times worse off—like THOSE who are paralyzed from the neck down or blind or trapped in an underground mine or wrongly sent to jail for life. That helps. (And I promise myself a half Vicodin and a vodka in bed later when the teen’s homework is completed.) I finally dare to open my eyes and there’s nothing but a ceiling about 8 feet above me. Bliss. But then the kind Indian technician comes in, asks exactly where the pain has been and I tell him that it was the middle of the back. Annoyingly, not the remotest twinge right now.
But he says I must now lie still again while the machine does an extraordinary 360 right around my body—focusing on the middle of my back for another forty five minutes. In what may qualify as the dullest ninety minutes I’ve spent all year, I decide my future may lie in inventing a sort of exhilarating 3D light show/movie experience for those who must lie still whilst being tested and scanned, x-rayed, given chemo or IV infusions. Bed-ridden hospital patients –from kids to old folk- would love it. Couldn’t I invent something like that and make millions? If only I had follow-through.
Next day as I wait for the results I learn about a friend who took the drugs for just one year after her breast cancer and then stopped. Five years later the cancer returned. In her bones. I run to the kitchen and tear open one of the trial packs of two weeks worth of Arimidex that Dr Glaspy gave me and swallow one. My plan to wait for the Complete Hormone Test results are out the window. Fear has taken hold.
And now it’s ten days after the surgery and I have very cunningly booked tickets for myself and Nick to head off to Europe for a skiing holiday in Italy leaving in three days. I would have preferred it to be two days later but flights are crowded and it’s either now or never since Spring Break begins in five days and Nick has been wanting to go back to my best friend Gael’s stunning log cabin-style ski chalet in the Italian Alps since he was six when he first learnt to snowboard. I’m too nervous to ask Dr Bob what he thinks – and too horrified to even think about telling Nick that the trip is off. His giant snowboard bag has been packed for a week with the multitude of long johns I’ve insisted on buying and snazzy never-worn white boots plus the precious virgin snowboard that he’s painted pink and green.
And lest anyone rush to judgement let me make it very clear that I had no intention of hitting the slopes. My plan was to chill inside and read a thing called a book. But I am still shattered and so very, very tired. I have to lie down at least twice a day and the thought of packing and vile economy travel via Chicago to London fills me with such dread that even I come to my senses and realize perhaps he can go alone. The giant teen already flew back from Australia alone when he was about 8 and wearing the unaccompanied child tag will mean he’ll be helped with connecting flights and almost certainly make it to his destination despite the horrors of Frequent Flyer travel. When I deliver the sad news that I may not be coming, his obvious joy and excitement are downright unseemly. Not a whit of disappointment. The little bastard’s deliriously happy and I hear him telling a friend that ‘it’s so stressful traveling with mum. It’s gonna be great going on my own.”
By the time we’ve made it though impossible lines just to check in—and reached the Departure Lounge, he’s complaining bitterly that he looks ’like a retard’ wearing the Unaccompanied Child Info in a pouch round his neck and livid that I’m trying to sneak extra water and bananas and cough drops into his backpack! As he puts the ipod earphones into his big manly ears and tries to ignore me, I suddenly realize I’m sending my darling only son off on some ancient American Airlines plane on his own and what if something was to happen…I SHOULD BE GOING WITH HIM! Needing a distraction I whip out my iphone and start to take some photos. He ignores me as I ask him to smile about 7 times and then finally turns and gives me one of his big goofy adorable grins. That’s all it takes. I’m now in floods of tears and Nick, used to his sentimental slob of a mother weeping at the drop of a hat is merely amused. Just as he tells me he’s starving and dying for a double whopper from a Burger King he’s spotted in the distance, there is an announcement demanding that Unaccompanied minors who are being sent off alone by their callous, uncaring mothers, must board the plane immediately. I’m allowed to bring him right on board the plane which he keeps insisting is NOT necessary but I see him to his seat, try to hug him about five times – and finally, weeping again, take my leave. But as I’m working my way through cranky passengers all heading in the opposite direction, I hear an announcement that cash is no longer accepted on international flights and that meals can only be purchased with credit cards. What ??
My poor son, THE only child traveling without a mother on this flight, has NO credit card. He will starve to death. I have no choice….I make a mad dash to the Burger King, and after anxiously waiting what seems like hours (desperate to cut the line, but not quite bold or insane enough to try at an airport )I order some whacking great Double Whopper burger that upsets me a great deal having just seen the documentary Food Inc- but a starving credit card-less teen must be served and soon, holding the burger, fries and a truly massive Coke that could strike diabetes into a giant, I’m dodging cranky travelers in a mad sprint back to the gate- terrified it will have closed and I’ll be forced to consume it all myself.
The woman punching in the boarding cards, the one who took us on board earlier, is very, very busy and so I just I run on through, down the tunnel and up to the plane door. The stewardess there sniffs enviously at the fries and sweetly offers to deliver them but a pilot appears and she’s immediately distracted. Don’t want the lad to get cold fries and so off I dash, past dull folk who spend hours stowing bags in the overhead bins, past lots of jokers asking if I have a spare grub for them and finally, I spot MY BOY!
I stop a few feet away and hold up the burger and drink in triumph…Several passengers break into a spontaneous cheer but Nick’s expression is one of utter horror. Did I change my mind? Is HIS MOTHER NOW COMING WITH HIM? Reddening with humiliation, he whips ipod wires out of his ears, and gives me a beady-eyed stare that in an ideal world would make me invisible but luckily, the smell of fries and burger reaches his nose in the nick of time and he manages a small smile as I hand it all over and reassure him “Just delivering honey. Don’t worry, I’m not staying.” He manages a “Thanks mum. Love you. Bye” before popping in his ipod and starting to inhale the grub.
I take my leave, politely asking a passing stewardess if she could possibly give the teen without a credit card some free food on the flight. She kindly agrees and I make it off the plane and out of the terminal before breaking down sobbing as I realize that yet again, cancer has won out. It’s robbing me not only of a long-anticipated holiday with my best friend but of precious time with a son who’ll soon resist even the idea of holidays together. It’s robbed me of memories that can’t be repeated. It’s also taught me that airport security is pretty darn slack and that one surefire way to annoy a teenager is to appear on a plane with food when he thinks he’s already escaped his mother for two weeks.