Cancer

Zeta-Jones’ disorder is likely not news to her; she’s probably been working to manage her condition for some time. She once told the UK Sunday Times, “I try and stay positive, being negative isn’t good for my personality. I don’t just bring myself down, I bring everyone around me down. It’s like a dark cloud, ‘Uh oh, here we go’, and I have to snap out of it.” But a severe illness in the family isn’t so easily snapped out of. And for a person with bipolar II — typically characterized by less dramatic highs and more sustained periods of depression — it can be debilitating. And her decision to step up her treatment and take some time in mental health facility illuminates the tremendous emotional toll that caregiving can take.

Whether we’re bipolar or not, Zeta-Jones’ recent intense stress ride is one many of us can relate to. In the past eight months, I’ve been on all kinds of sides of this one myself: I’ve endured a diagnosis of malignant skin cancer, had one of my best friends face a grueling bout of ovarian cancer, and watched my father-in-law careen from rough but manageable Stage 3 stomach cancer to a terminal diagnosis to death within a three-week span. And if I’ve learned anything, it’s that while being the patient sucks a lot, having someone close to you get cancer is no day at the beach either.

Illness is like a traffic pileup on the I-95. The life of the person with the diagnosis screeches to a halt, and everybody close to that person suddenly can’t move forward unimpeded either. Time is lost from work. Sleep is interrupted. Meals are skipped. The little jobs that used to fall to the sick person now have to be delegated to others; all the cooking of dinners, the pickups from school, the paperwork and car inspections and loads of laundry still need to get done. The sick person’s inner circle has to pick up all of that, while shuttling the patient to an unimaginable number of doctor visits and chemo treatments, dispensing pills, tending surgical wounds, consoling children and, somewhere in all of it, managing their own fears and griefs and immense, agonizing powerlessness. When I got cancer, I thought it would damn near kill me. But when I watched two of the people I love most in the world get cancer, I thought it would damn near kill me too.

In the midst of a trauma, caregivers often feel they don’t have the luxury of tending to themselves. That’s how people end up looking like Aurora near the end of “Terms of Endearment.” Yet the physical — and emotional — toll of living through someone else’s life-or-death crisis is utterly grueling. And it’s sometimes not until the worst of the storm has passed that the devastation can truly be assessed. Michael Douglas and Catherine Zeta-Jones are fortunate to be successful enough to be able to afford all the private nurses and nannies and transportation they need. Zeta-Jones isn’t likely sobbing by the washing machine at midnight, or hastily slapping together cheese sandwiches for the kids while running late for school drop-off, or forgetting whether she washed her face today. But she surely knows what it feels like to hold the hand of a man she loves while doctors poke around his lymph nodes. She knows what it’s like to reassure her children about what their father is going through. She knows how long a night can be, and, clearly, how dark and depressing a day can be as well.

Fortunately, the prognosis for her husband, who announced he was “cancer free” in January, is bright. Now it’s Zeta-Jones’ turn to get treatment. When illness storms through a family, it isn’t just the patient who gets hurt. And as anyone who’s loved someone with cancer knows, it isn’t just the patient, in its aftermath, who needs to recover.

I’d thought I would. Months ago, when the treatment was just starting and my fate was uncertain, life without a flurry of infusions and blood work seemed unimaginable. That was around the time my friend, the writer Anne Stockwell, wrote to say that she was planning a Web community called WellAgain. “We cancer cases get amazing and heroic care during treatment,” she wrote, “but after is when the emotional hammer hits, and somehow after is exactly when we find ourselves alone again.” The name, she explained, “refers to the fact that cancer never gives you the certainty that you’re well again. So you have to decide what well again is for you.”

Anne understands that feeling all too well. She has been diagnosed with ovarian cancer three times and describes herself now as a two-year “cancer survivor who hates the word ‘survivor’.” She prefers “cancer veteran.” “I think of myself as someone who went to that war and came home,” she says, “and was lucky to not to be too grievously injured.”

Here in the homestretch, I can almost start to see myself that way too. I used to keep a keen eye toward March 15, like a child waiting for Christmas. I eagerly imagined the bright new world of improved energy and fewer afternoons tethered to an IV drip. But now, like many who’ve been in this very fortunate position, I find myself approaching this milestone date with both indescribable relief and gratitude — and a fair amount of other, surprising emotions as well.

There’s the fear, of course. My treatment schedule has been working well just like this. It’s saved my life from shockingly dire odds. What happens when the protocol changes? The hope with immunotherapy is the body will continue to fight off cancer cells, but there’s something pretty comforting about watching the drugs go in and knowing that they’re doing the fighting for me. This is the beginning of finding out how much my body can do on its own. It’s not exactly flying without a net, but it does represent a different and scary level of autonomy. As Anne puts it, “I’d been pumping my guts full of something to fight cancer — now what? I was quietly afraid for a long, long time.” And my friend Martha, a therapist who had breast cancer two and a half years ago, likens the end of chemo to when she had her first child. “I was in the hospital after a Caesarean,” she says. “Of course I wanted to go home, but when they discharged me, I remember bursting into tears and thinking, ‘It’s all on me to do this now.’”

Until that day comes for me, I’m still living in a body that feels like crap a lot of the time. And the side effects, cumulative and intense, of cancer treatment don’t melt away the moment the nurse unhooks the drip. In fact, the treatment itself often doesn’t even end then. There are maintenance drugs and infusions, often stretching on for years. In my case, I’ll move to a schedule of treatments every three months that I hope will continue to do the job.  And while I likewise hope for my energy to return and my rashes and dizzy spells to go away, I don’t expect that to kick in by happy hour on March 15.

At least the dread of recurrence and the ongoing struggles of side effects are the kinds of things that are easy enough to explain to people. But there are other aspects of wrapping up an initial course of treatment that are harder to discuss. There’s an oddly sad element to it, and an often-awkward identity shift. It’s almost like a graduation – there’s the sense of accomplishment and anticipation, but it’s mixed with a strong loss of security. Ending regular treatment means the reassuring, friendly doctors and nurses who are right now a near constant part of my life will become less frequent participants in it. Similarly, I will have to begin transitioning out of my weekly cancer support group; I’ll have to prepare for the Tuesday night that it will not include me. I’ll be so grateful to no longer be an active patient, but I’ll miss the updates and stories, the camaraderie and humor. Sure, some of us will keep in touch. But you know what it’s like when you leave a place, even for happy reasons.

“A lot of people go into depression when treatment is over,” says Martha. “I felt a little bit lost after treatment. People shore themselves up to get through it. It takes everything in you to cross that finish line. But I had had a lot of good things that had come up from treatment — I’d started writing music, and found I had a gift for it. There was a lot of hope then. It’s taken time to really learn how to take care of myself in a new way and live again.”

That’s why it’s bittersweet to move on to the next part. “I think there’s a huge rush of the tide to get you back as though nothing happened. To reassemble the picture that you had before,” says Anne. “People think that must be what you want, you must want to forget this. The big mistake is that it’s forgettable. Or that there’s an end to it. There’s no end to it.” And as Martha says, “The doctors will say, ‘Oh, you’re good. Go enjoy your life.’ But you don’t stop having had cancer once treatment is over.”

Cancer is part of me now. It’s part of all of us who’ve experienced it, whether we call ourselves survivors or continue to grope, as I do, for a word that makes sense of this new place. How can I call myself a “survivor” when I will spend the rest of my life monitored and tested, a veteran who knows all too well that another deployment could be as close as the next CT scan? We cancer vets live daily with our cancer — in the scars on our bodies, the memories of the people who were kind when we needed help, and the way that we can never again take for granted what a gift it is to make plans.

This President’s Day, I am getting a CT scan. On Thursday, I will go back to Sloan-Kettering  for my penultimate regular treatment. I’ll come armed with a freshly squeezed orange juice I got at the Jamba Juice around the corner, as I do each time. I’ll sit in my suite and watch movies on my laptop. I’ll probably cry when they try to draw blood, because my veins are shot to hell. I know the drill. Will I miss it? No. But I’ll miss the security of it; the purposeful sense of being so actively engaged in the job of killing cancer cells. I’ll miss the regular engagement of my medical team and my support group, who I’ve come to regard as good friends. I will no longer be a full-time patient. I won’t be my old, pre-cancer self either. I’ll miss those old selves, even the one with the life-threatening cancer. She was one tough broad. I will be someone different after March 15, and that’s scary and strange to contemplate. Fortunately, it looks like I’ve got the rest of my life to figure out who she can be from here on in.

Yet when the news broke Tuesday that Komen was ending its funding for Planned Parenthood breast cancer screenings and services, the organization’s eagerness to throw Planned Parenthood – and the women who depend upon it – under the bus wasn’t surprising. It’s actually thoroughly unshocking for this venerated organization to pull such a crass, insensitive move.

The very name Susan Komen — with its direct association with a real woman, and founder Nancy G. Brinker’s promise to fight the disease that claimed her sister — is heart-tugging. Today, everyone who knows a woman likely has a breast cancer story – and with it, a Komen-flavored story about donning a pink T-shirt and running in a Race for the Cure, or shopping in October for pink-themed “Girls Just Want to Have Fun” notepads to help raise “awareness.” Along the way, Komen has become the McDonald’s of cancer — an easy-to-remember brand with a logo that demands little thought or effort from the consumer. Write a check, buy a ribbon, voila! You get to feel like you’re curing cancer.

It’s not that Komen is some questionable, Wyclef Jean-esque mess. It gets high marks from both the Better Business Bureau and Charity Navigator. Yet this is an organization that has repeatedly come under fire for its extravagant promotion of itself as an organization dedicated to a “cure,” when only a small portion of its expenses go to, you know, curing cancer. Komen itself cops to portioning just 24 percent of its funds to research – and 20 percent to fundraising and administration. For an organization with reported revenues of nearly $350 million, that’s still a lot of money for research. It’s an awful lot for itself, too.

Yet Komen remains pretty damn territorial around that whole “cure” thing. In a 2010 story for the Huffington Post, writer Laura Bassett pointed out that, according to Komen’s own financial records, it spends almost “a million dollars a year in donor funds” aggressively going after other organizations that dare to use the phrase “for the cure” – including small charities like Kites for a Cure, Par for the Cure, Surfing for a Cure, Cupcakes for a Cure, and even a dog-sledding event called Mush for the Cure. Let me just give you that number again. A million bucks a year. Robert Smith, better watch your back.

Komen has also, in its relentless pursuit of ubiquity and corporate sponsorship, aligned itself with more dubious product placement than a “Jersey Shore” marathon. It has a whole online store encouraging visitors to “purchase with purpose to end breast cancer forever,” where you can buy “silicone bling watches” and “Passionately Pink” ribbon-shaped cake pans. And because you’ll have to root around for the numbers, you can spend extravagantly on candles and “spirit gloves” without knowing that merely “at least 25 percent of the retail sales price … will go to Komen to help support … research and community programs.” Twenty-five percent of that $4.95 dog leash? Why, that’s more than a whole dollar!

Komen also famously outsources its merchandising. It’s teamed up with the likes of KFC for “Buckets for the Cure” – because nothing says you care about women’s health like a big vat of fried chicken. Komen has additionally sold a pink-hued “Promise Me” perfume that contains several toxins –  including galaxolide, a synthetic musk that critics claim is a hormone disruptor. Komen has promised to reformulate the scent this year, but as Uneasy Pink calculated last spring, that’s still a lot of questionable chemicals to buy when roughly only 3 percent of the purchase price will go to Komen’s oft-invoked “cure” anyway.

And what of Komen’s latest, most potentially damaging stunt with Planned Parenthood? Komen says the move is just about “newly adopted criteria barring grants to organizations that are under investigation by local, state or federal authorities.” You know what else is pretty “new” around Komen? Its senior vice president of public policy, Karen Handel. During the Sarah Palin-endorsed, Tea Party favorite’s 2010 campaign for governor of Georgia, Handel declared, “I do not support the mission of Planned Parenthood,” making clear that she “strongly supports” laws prohibiting “the use of taxpayer funds for abortions or abortion-related services.” She did, however, emphasize that she “strongly support(s) the noble work of crisis-pregnancy centers.” If you were one of the world’s biggest charities and were looking to hire someone who had women’s welfare as her greatest imperative, would you go for someone who’d send them to a place that offers breast cancer screenings – as well as ovarian cancer screenings and HPV tests? Or someone who prefers a bunch of right-to-life fanatics pretending to be a medical facility? If you picked the former, you’re smarter than Komen for the Cure.

That Komen has raised staggering amounts of money is undeniable. There’s also pretty compelling evidence that it has done so in some pretty boneheaded ways. So given its track record, it’s fair to ask what happens now to the 11 percent of the Komen budget that goes to screening. Does it get funneled toward more glitter bracelets and “Promise Bears”? And what happens to the women who depend upon Planned Parenthood to tell them whether or not they have breast cancer? What becomes of mothers and daughters and wives and friends who believed that Komen’s commitment to “the cure” meant something more than protecting its catchphrase? It’s worth noting that while breast cancer rates are dipping, an October report from the American Cancer Society warned that they are declining more slowly among low-income women, and that “Poor women are now at greater risk for breast cancer death because of less access to screening and better treatments. This continued disparity is impeding real progress against breast cancer.” You know who loses when Komen backs away from Planned Parenthood? Probably not those nice, pink-clad ladies who attend Susan Komen wine-tasting events.

Women’s healthcare is not about lace-trimmed scarves and bottles of perfume. It’s sure as hell not about some feel-good, lip-service version of what my colleague Rebecca Traister calls “infantilizing Pepto-ed advocacy.” It’s not even — for anyone still stupid enough to think Planned Parenthood is some giant fetus-killing complex — about abortion. It’s about screening. It’s about treatment. It’s just that simple. The further away an organization gets from that mission, the more women suffer. It’s just that simple too. And you don’t make good on a “promise” to your dead sister by selling out women who need you most.

Every three weeks, I spend a day on the fourth floor at Memorial Sloan-Kettering, hooked up to an IV as strange new drugs drip into my system. Every week, I am monitored and quizzed and examined and have truly ludicrous amounts of blood drawn. The external effects of the regimen presented themselves early on – crushing exhaustion, an itchy rash, dizzy spells – but I would have to wait three months, until January, to learn whether the drug combo was doing any real work on my cancer. The fact that the lump on my back subsided after the very first treatment was encouraging enough to get my doctor enthusing, but having been declared “cancer free” once before, I knew to temper optimism with caution. Especially because these are uncharted waters.

Immunotherapy, my doctor says, is like religion. “For years,” he tells me, “we just had to go on faith.” It differs radically from chemo in that it coaxes your body’s own defenses to attack disease – and then, astonishingly, to continue defending the body after treatment has ended. It’s still considered a new frontier in cancer care, and at first glance, it’s easy to see why. Its main forerunner is Interleukin-2, an immune-system treatment for patients with metastatic cancer that is infrequently used and only sporadically effective. And one of the immunotherapy drugs I’m on, Ipilimumab, won FDA approval last year with a mere 30 percent success rate.

Yet the way we treat – and try to head off – cancer is changing radically. Look no further than the rise of the vaccine Gardasil. Since its approval in 2006, it has been routinely given to girls to help ward off HPV, which can cause cervical cancer. And just last week, the Roswell Park Cancer Institute in Buffalo launched a Phase 1 clinical trial for a vaccine researchers say “harnesses the power of the body’s immune system to kill cancer cells.” Imagine a world in which preventing and treating cancer didn’t automatically mean harsh protocols like chemo, radiation or interferon. Imagine something that might someday be as simple as getting a shot. It’s coming. Because as my clinical trial nurse puts it, “It’s the immune system, stupid.”

That dramatic day, however, is still a long way off. In the meantime, if the other 10 people doing this trial at MSKCC are anything like me, they’ve been dealing with scarred veins, side effects  and nagging uncertainty. Science may be moving at a breathtaking clip, but when you’ve got a cancer that often kills within a year, it simply may not be moving quickly enough for all of us.

That’s why when my doctor said he had my results, I wasn’t sure I wanted to know. I had been at MSKCC just that morning, guzzling sickly sweet, room-temperature liquid and holding my breath inside the CT scan machine. After three months of infusions, I’d now know whether that spot in my lung was growing or shrinking, whether my cancer was accelerating or diminishing. That night, as I stood in the hall outside my support group, I held my breath again. And then my doctor told me, “I have good news.”

“The tumor in your lungs is gone,” he continued, “and the one on your back has receded completely.” I don’t know a lot of fancy medical jargon, but I do know that “good news,” “gone” and “receded completely” are, for a person with distant metastases, downright extraordinary.

Two days later, I was back at Sloan-Kettering, awaiting my next infusion. “I know you can’t reveal much,” I’d asked, “but can you say anything about how the other people in the trial are doing?” I may be thriving, but if it turned out other patients were dropping like flies, I’d hold off on popping a bottle of Dom.

“We had two other patients who had scans this week,” the doctor said. “Both of their tumors have shrunk significantly. But you’re at 100 percent, so that makes you our valedictorian.” And while it’s nice to be valedictorian, what it really means to a team of researchers — and Bristol-Myers Squibb — is that I am solid results.

This isn’t a happy ending. People with Stage 4 cancer don’t really get those. This isn’t even an ending. I’m still only halfway through a trial that is kicking my ass. After I complete it in March, I will be on maintenance treatment every three months for the next two years. I will have skin checks and MRIs and scans for the rest of my life. I will live with the reality that melanoma, as I have already learned firsthand, makes more comebacks than Cher. And nobody really knows for sure what the long-term effects of my treatment are, because nobody’s ever done this particular course before. I’m hoping they include super strength and sexual charisma, but liver damage seems likelier.

Yet right now, I have hope that the middle-aged woman in Treatment Suite 26, the one whose elderly father sits by her side as they watch “Dr. Phil” together, is getting better. That the tall, 20-something guy in the Superman T-shirt, a genial fellow who tells me the cancer has already come back twice before, is too. And it’s a humbling and fantastic thing to consider that, someday, because of what the sick and the healers are doing on the fourth floor, you might get to survive, too.

When I went in for my last treatment, my doctor asked if I wanted to see my scans. You bet I did. He sidled over to a monitor in the corner of the exam room and brought up an image dated Oct. 6, 2011. “This is your lung,” he said. “See that there? That blob? That’s the tumor.” Then he brought up another image right next to it. “This is you now.” It looked just the other one, but with one significant difference. No blob. He did the same for the picture of my back. “Here’s the cancer,” he said. There was a green arrow pointing to it, a flag that some technician added three months ago, a little signpost of malignancy. “And this,” he said, double-clicking on a different picture, “is you now. Nothing.” Nothing has never looked so beautiful.

“Wow,” I replied. “That’s amazing.”

“Yeah, it is,” he said, beaming. “It’s more fun when it works.” I looked at the monitor and smiled too. Within those weird, abstract images I could see so much, so clearly. I could see sunsets and birthday parties; I could see snowmen and sand castles. And I thought, yup, it’s the best fun ever. It’s even better than a happy ending. It’s a future.

What began as a small Facebook campaign in December to urge Mattel to create a Bald and Beautiful Barbie has, in recent days, blossomed in to a full-on groundswell. It’s attracted international media attention, and the Facebook group is closing in on 90,000 members. Think of the possiblities for cute hats!

The concept came from a group of parents whose children had hair loss from cancer treatment. Rebecca Sypin, whose daughter has been in treatment for leukemia the past two years, told MSNBC this week, “We would go to the store and people would stare or kids would ask her why she’s bald. It’s not something they’re used to seeing. We think [a bald Barbie] would be therapeutic and I think it would help baldness become more quote unquote normal. It would be seen. It wouldn’t be this odd thing that people don’t have hair.” There are already a small number of dolls  targeted for kids who are facing hair loss – either their own or a parents. But they’re generally softer, educational props aimed at younger children.  No one with the cultural wallop of Barbie has ever ventured into the scary terrain of baldness — and the array of diseases that it implies.

What neither the Facebook campaign nor Mattel have yet to address is the way that Barbie has long been an icon to adults as well as children. Any woman under the age of 60 grew up with her. And Mattel’s reliable marketing to grownups proves that you don’t have to play in the Dream House to have a soft spot for the plastic lady, despite her impossible-to-achieve lifestyle and physique. A bald Barbie wouldn’t just be a unique role model for little girls; I guarantee she’d be a runaway hit with women dealing with hair loss and the identity issues it creates — and it’d be a boon to their daughters. I know a harrowing number of women with cancer, and not a one doesn’t have a very complicated relationship with the issues of baldness, wigs, and femininity. To be both “bald and beautiful” is a powerful concept, one that ought to resonate far beyond childhood.

Though Mattel initially responded to the campaign with a form letter that it “doesn’t accept ideas from outside sources,” the company expanded in a more public relations friendly statement Thursday that “We are honored that Jane Bingham and Beckie Sypin believe that Barbie could be the face of such an important cause. Mattel appreciates and respects the passion that has been built up for the request for a bald Barbie doll… We are constantly exploring new and different dolls to be added to our line.”

Yet it’s understandable why Mattel might be reluctant to roll out a Barbie whose head is as smooth as the rest of her body. Accepting an outside concept might easily put the company in the vulnerable position of having to pay someone for it. But there’s perhaps another reason. Barbie does a hell of lot – she has been a cashier and a U.N. ambassador in her time – but she doesn’t walk with her heels on the ground and she doesn’t get cancer. She may have had a friend in a wheelchair, but Miss Thing herself will likely forever remain impervious to disease. If the consumer demand is there, however, she may yet acquire a buddy with a jaunty, Pucci-inspired scarf. And that’s a good start.

The fact that a loving group of parents had the notion to look at the doll that generations of females have exhausted themselves trying to emulate and asked aloud how she could become a figure of hope and strength is impressive. It’s a testament to her power as a standard bearer. Most girls, whatever their health or their hair, don’t see very much of themselves in their Barbies. What they do see, however, is a girl who is popular, successful and smiling. The enduring appeal of Barbie isn’t just her tiny waist and fabulous accessories. It’s that, bless her nonexistent heart, she is happy. Where there’s happiness there’s hope. And where there’s hope there’s healing. A bald Barbie wouldn’t cure cancer. But a doll that represents possibility, to both children and adults facing the pain of disease and the day-to-day ordeal of looking different, would be so much more than beautiful. She’d be a beacon of joy. She’d be perfect.