December 2010. My 74-year-old mother had just made it through her grueling battle with stage 2 aggressive HERS2 positive breast cancer. She had her lumpectomies, her radiation, her chemo and she had come up clean. She had tested negative for the gene that my sister and I could have potentially inherited, so I wasn’t particularly worried when the doctor found a lump in my cystic right breast that very week. But as fate would have it, I was wrong. Woefully wrong, and I was diagnosed with my own different, non-inherited breast cancer – Stage 1 estrogen positive.
As I embarked on my own year long journey – the lumpectomies, radiation, ovary removal – I wondered: how was it that I could get breast cancer the same week my mother was calling to tell me she was all clear? I chalked it unto incredibly bad luck. Yes, my father had gotten and survived prostate cancer ten years before, but he made it through with shining colors – barely a blip on the radar. If my 74-year-old mother could make it through a far more aggressive cancer than I – a very healthy and fit 50-year-old – had, then I could, too. And I did.
We worried for my sister Kathy – she was 3 years older than me, but could she be next? My beautiful blond sister was at a loss – she was always the one who was supposed to be first. I don’t remember a moment of my childhood, growing up in the 1960-70s without my sister in it. She called me sweetie and I called her Dee-dee. I named all my dolls Dee-dee after her. Because I had violet eyes (and very little else going for me) when I was little, she told me I was the long lost daughter of Elizabeth Taylor and I was left on our family’s doorstep for them to take care of me because I was too much for Liz ‘s career and it was she who begged my parents to let them keep me! I worshipped her and believed her whole-heartedly.
She was the sunny, happy girl who I looked up to but whom I looked nothing like. She was blond and green eyed and fair skinned and pug nosed and happy and quick-witted. I was dark and dorky and one-eyebrowed and miserable and green skinned and gawky and occasionally funny.
“Hi, Hilary! Where’s your sister?” was the phrase I remember most from my childhood. She could have been a total bitch lauding her beauty over me, nd yet she was brilliant to me. She loved and protected me. I was her baby. I may’ve looked like Lisa Lupner and had the personality of a “crabby appleton”, but I was her baby sister, goddamn it, and she was my champion.
All my childhood, she lead and I followed. When we moved to a bigger house and got separate bedrooms, I was devastated but not defeated. I just slept in her room every night. She knew what music to listen to – not the Monkees like my nerdy comrades, but cool stuff like Bob Dylan and David Bowie. What to wear – not the childish Danskin stretchy olive green matchy-matchy outfits favored by my peers, but Mary Quant make-up and white go-go boots and paper jump suits like Twiggy. When I was bratty and got in trouble for who knows what and wasn’t allowed to go to Radio City Music Hall to see Half-a-Six Pence for the Christmas spectacular in 6th grade, she insisted I get to go or she would boycott too. I got to go.
It was she who confidently guided me on our weekend train rides from our idyllic rural Long Island home into NYC to stay with our beloved grandparents. I never was afraid when I was with her, my sister’s strong hand in mine as she lead me through the smelly jostling crowd of Penn Station, stopping to get an Italian ice and big hot pretzel before we headed into the urine smelling RR subway ride uptown, where we would spend the weekend entranced with my exotic grandparents and going to our all favorite haunts: Serendipity for frozen hot chocolates where the snotty effete greeter never acknowledged knowing us, or Le FLick to watch silent movies while we munched burgers or to see the latest Broadway show outlawed by my mother but allowed by our wild grandmother, Hair.
It was my sister’s strong and vigilant presence next to me that never let me fear being kidnapped as we were sent out to play together in a small green park by the river, or while we ran to get a new outfit at Bloomingdale’s and a new toy at FAO Schwartz, our crisp twenty $20 bills clutched in our hot little hands as we ran wild together through the streets of my grandparents’ uptown neighborhood. When a leering drunk or stinky homeless person approached, my sister taught me how to put up a tough invisible shield that immediately sent out the vibe: “DO NOT FUCK WITH US!” And they would inevitably back off, and hit on a more vulnerable prey. We would stay up all night in my grandparents’ grand apartment with its beautiful terrace overlooking the East River, watching Home Box Office because my brilliant sister had convinced my grandfather that we could indeed sleep ‘with our eyes open’ while the TV played.
When the cruel taunts of phony phone calls started in 7th grade – “You-are-tall-and-skinny-and-ugly-you-are-a-walking-stereotype” – it was she who comforted me. “Don’t worry. You are tall and skinny now because some day you are going to be a model.” When we were on a family ski trip in Park City, Utah, we met two gorgeous surfer brothers from Beverly Hills (!!) and the younger brother had no interest in me, refusing to go on a double date “with that DOG!!!” (me), she brought me along on her date, feeding me an ice-cream cone while she made out with her boy, telling me that the younger brother “doesn’t know who you are that one day you are going to have him falling at your feet and some day that boy will eat his words!”She was the first person I called years later when I ran into that same surfer boy while I was a new and way improved (contacts, waxed eyebrows, grown into my nose) sophomore at USC as he followed me around campus like a lovesick puppy dog.
I’m sure people wondered if it was hard to be the ugly duckling little sister of such a beautiful kind older sister, to live in her shadow, but I can honestly say she made it easy for me. Because she loved me so fiercely, it meant I was as worthy as her. When she went off to college, that’s when my mother would tell everyone that I began to ‘bloom’, to come into my own. I could speak up now, I could have my own style; boys didn’t come over just to catch a glimpse of her. But I know I had bloomed long ago under her constant tutelage and care.
We grew up. We married, and had our two daughters within weeks of each other. Although we lived on different coasts now – she still on Long Island and me in LA – our girls were close and spent their summers together at the same summer camp, which I was almost kicked out of for some crazy stunt I pulled years ago involving my entire bunk of pre-pubesent naked girls hanging from the rafters like bats (don’t ask) until she insisted she wouldn’t come back if I wasn’t allowed back… which would have caused the entire camp to shut down! Needless to say, I was allowed back, and so were our kids.
She was as fierce a mother to her two girls as she was to me – when her younger daughter came down with severe OCD and it was suggested they ‘put her away’, it was she who fought with every ounce of her being to save her and she won, finding alternative methods to get her child’s life under control. So when I was diagnosed, she braved her fear of flying, found someone to watch her own troubled child and raced to my side. When it was determined I had to be put into menopause so I could take the drug Arimidex to battle my cancer, she threw me a “Very Merry UN-Ovary Party”, dressed to perfection in her Diane Von Furstrenburg wrap dress and vintage Hermes bag, and feted me and my girlfriends with hilarious stories from our childhood. She talked me back down from the ledge many nights as I worried: Did the cancer spread? Will I live? If so, will I still be attractive? Newly divorced and in a new relationship, would my man stick with me? Yes, she assured me. YES! He will love you and YES! You will live and YES! You are still beautiful and I believed her. She made me laugh as she tried to guide my Prius through the unfamiliar streets of LA – not a great driver in the best of times – picking up my kids in strange neighborhoods for me. She never let me think for a moment, I wouldn’t make it through and when she shone her special golden light on me, I knew I would.
So a year later, I am through the worst. I had tested clean on every test and was vain enough to want to fix all the damage to my radiated right breast with a debilitating but necessary 9-hour operation which takes off the old breast and replaces it with muscle and tissue from your shoulder. Not fun. Then, a second operation to form a nipple and lift up the other breast to match. Ugh. Still, I scheduled the operation for late August when my little daughter would be at our sleepaway camp for a month, and had a terrible night of sleep. That morning, as I groggily drive home from car pool, I noticed a missed call on my cell phone. It was from Kathy’s husband, Scott, who in all the 20 years I’ve known him, has never called me. His voice sounded anxious and tired.
He told me to call him immediately. When he answered, he told me to pull over the car. This was not going to be good. I braced myself for all the possibilities I can bear to conjure – one of their children was in a minor accident? A little fender bender, perhaps, or my elderly parents have another ailment that Kathy needs Scott to tell me about? That is all I could handle to imagine as my heart beat out of my chest and all time stopped. Then he said the one thing I have never let myself imagine: Kathy has two brain tumors that are making her brain swell and she is in the emergency room. That persistent cough she had wasn’t just a cough and my sister, a non-smoker, had lung cancer that had spread to her brain and her liver and her bones. How could this be? I thought. What ancient family curse has befallen my father, my mother, my sister and me?
Not Kathy. Not my golden haired idol. Anyone else, but not her, she of the easy laugh and the kind heart and the fierce loyalty. Surely someone WHO IS A FUCKING MASS MURDERING RAPIST AND NOT MY BEAUTIFUL SISTER deserves to HAVE STAGE 4 LUNG CANCER!!
I was devastated. But I knew what MY job was, then. Now I had to be the big sister. I had to be the one to lead and encourage and love and guard and teach. So I did. I took everything I’ve learned on my journey and I poured it on my sister. Every book, every supplement, every website, every doctor, every resource.
It looked bad for my sister, but I know my sister. And if there’s a glimmer of hope, then she would find it. She regaled me with hilarious stories from the emergency room. How the nurses couldn’t get over how her hair was done and she was clutching her Louis Vuitton purse while her brain almost exploded. How the steroids they gave her to control the brain swelling made her boobs look really good. While she waited for her test to come back, she was upbeat and optimistic that she would have the mutated gene that they have a revolutionary experimental drug for and she did! And when took the miracle drug, Tarceva, she did better on it in three weeks than anyone before her.
Her lung tumor shrunk to half its size; it is no longer in her lymph nodes or her bones and the radiation they did on her brain (although it made her beautiful blonde hair fall out in clumps, which she adapted a “Kim Cattrall meets Donald Trump combover” to hide while she awaits her human hair wig) eradicated her brain tumors. She relayed this all to me in hilarious antidotes. She imitated her Asperger-brained English doctor’s accent to a tee. My own operation was looming, so I scheduled a visit with me and my daughters and we descended on her house on Long Island, determined to have a great time despite the circumstances – and we did. When she was too nauseous from her treatment to swim in her pool, we watched Best in Show and white trash reality shows and I schooled her on the cancer diet. We fixed her wig and she paraded around in it like she is one of the contestants on Toddlers and Tiaras. All I need is my flipper in and my wow-wear on to win the cancer competition!
Cancer and all, we can still make each other laugh till we get weak in the knees. She looked beautiful and she was happy despite everything. She has the best attitude – until someone forgot to read through an article that they send her that they have carelessly downloaded off the internet that has the headline “Patients who take Tarceva live three times longer than those who don’t”. The article said that people live from three months to 11 months. And then I couldn’t find her and when I do, she was on her bathroom floor sobbing and it is me who picked her up and crumpled up the article and comforted her and talked her back down from the ledge.
“What the fuck does some stupid random article online know?! They don’t know SHIT about you and your health are! You are the one person who can beat the odds!” I set her straight just as she set me straight all those years ago when those mean girls or those beautiful boys put me down. YES! You are still beautiful and Yes! You will live YES! I told her. Yes!
I flew back to LA and went through my own grueling nightmare mastectomy rebuild and we spoke on the phone every day and we wished we were on the same coast in the same bed like when we were little and we could cuddle together and ‘sleep’ with our eyes open. We talked through our doctors appointments, our kids, our affinity for pain meds and how maybe I could revive my ancient acting career by going on celeb rehab.
Although I know hers is a far worse struggle than mine – I am over the hump and doing reconstruction work and she is in the trenches fighting for her life – I make my struggles as bad as hers to somehow lessen her pain, to let her know I am literally going through this all with her. No longer the little shadow and her big sis, but two frightened but strong women who will get through this journey as we always have – together. With my sister’s hand in mine.