Tuesday, May 4, 2010
How to embarrass your teenage son...
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.