I have been talking about a writing project with my daughter Emma for years now about our experience with leukemia. Today she sent me this piece and instantly I thought about piece I had written and submitted to the This I Believe website. My idea is to put our writing together matching our stories as seen through each other’s eyes. The reason we haven’t done this is because I am reticent to open up my vault of pages to her. I always protected her from whatever I could and yet she will be 21 in June. We both have done so much healing through our writing and our audience would be other families experiencing illness.
These pieces also make me think about what the world would be like if we saw each other as others see us.
Love, Laugher and Leukemia
I believe in the power of change. I believe in going with the flow and embracing flexibility, fear, not knowing and inspiration through the process of change. I believe we cannot wait to do what is best because all we may have is today. I believe in passion and inspiration and impulsivity. I believe in intuition and improvisation as we work each moment to make it matter. I believe we have one life and one life only. This is not a dress rehearsal and so we must strive for every moment to count. I believe in joy, laughter and fun. I believe we can have all of these things as we embrace the process of life that is forever changing whether we like it or not. I believe there is so much in life that we cannot control that we should strive to make the very best of the things that we can! I believe that life is hard, but stories and laughter and connections with others make it worthwhile. And even though I believe all of these things and more, I still have to make an effort to do all of these things myself whether it is in each day, each hour or each moment. I believe we are here not to forget, but to work to always remember how lucky we really are. And that, my dear friends, is not always easy.
January 20, 1997, Emma was diagnosed with leukemia at the tender age of three and a half. This was the day I was redefined in ways I would never be able to comprehend. That day I left my class of 5th graders and never returned to the classroom as a full-time teacher. That day I was no longer a “normal” mom attending story hour. Playgrounds and swings were replaced with hospital hallways and medical procedures. Play dates and monkey bars were replaced with visiting hours and IV poles. That day leukemia moved into our lives and refused to leave. It set its big ass right down on the couch, cracked open a beer and settled in for the long haul. You could feel his presence when you walked in the door. He was there and whatever I tried to do I could not get him to leave fast enough. It was out of my control. There were days I never showered, days I thought I could not bear the suffering of my curly red-haired, pudgy handed baby and the absence of my 8 month old Zachary. But I did. I just did.
And after four and half years of living in fear, the unthinkable happened. Yes, the unthinkable does happen. Emma was 6 months to being declared “cured” when she relapsed. Yes six lousy months away from freedom and we found ourselves again put in the shackles of a diseased life. It was unbearable. Any ground we had made was gone, forgotten, as new protocols, names of chemotherapies, and the new idea of radiation to her head and spine were thrown at me I could not dodge them as I lodged myself into a corner in of a dark room at Mass General hospital and I just cried, rocking myself back and forth, back and forth knowing that I could not, would not be able to do this again. This and more. I could not do it. I knew it. But I did. I had no choice.
And for every platitude that was thrown at me in the name of comfort I can only reply. God DOES give people more than they can handle…trust me…this was too much. I am NOT a better person for having experienced this. I liked myself just fine thank you before this all happened. I am just a different person. We all have shit. It just comes in different forms. What we don’t have is control. It is not in our power. And as much as we want and yearn to think we have control the truth is that we just don’t. What we do have is the power to embrace each moment for what it is. In the same way we must treasure each individual for who they are and not who we want them to be. We must have our eyes open at all times so that we don’t miss the beauty that resides within the shit.
I can still see my beautiful bald baby sitting in the oversized hospital bed wearing her blue and white silk panda bear pajamas smiling over at me and telling me our new favorite show was on. I would laugh and settle in next to her as we watched those chosen ones run through the aisles of a mock grocery store and try to find items faster than their opponents. The show was as ridiculous as our lives had become, but being with her in that moment was a reality I was comfortable with. I had to accept that I myself could not control the cancer, but I could try to have some control of making it a better journey, to roll with her emotions, to laugh together, cry together, play cards for hours on end, do crafts, read and anything else you can imagine doing. And eventually…very eventually we settled onto the couch and pushed leukemia over and made room for ourselves on that couch too. It was not easy. But we did it.
And so this story that has been written. This story that defined me for so long, for so many years, it not my story any longer… It is a part of my history. It has been written. It is done. And so we move forward to the next story that is unwritten and the one after that knowing that we are all going to die. It is just a fact and looking death square in the blue eyes of my Emma I know this to be true. So we might as well laugh, create new stories, cry, go with the flow, take risks, be free, love, live and try to accept what life has to offer…if even for just a moment.
Emma, 8 years old with Dr. Weinstein and Patricia.
Luxury, Laughter and Leukemia
by Daughter, Emma
“Don’t tell Daddy,” I whispered, leaning forward to slip the words in her ear. The plump red strawberry was clasped between pudgy fingers like a jewel. I brought it to my lips, and the juice squelched as I bit down, slightly sour, but mostly sweet. Strawberry bliss in fluffy white heaven. My temporary heaven: an oversized bucket of cool-whip fresh for the dipping. Mom smiled, and I giggled, giddy. It was the first thing that tasted right in days. The container of ripe red strawberries lay entangled in the hospital sheets beside us. I licked my hands, sticky and pink, destroying the evidence. We were all alone in the white-walled hospital room on the seventeenth floor, the beeping pagers and shuffling rush of the doctors shut out by the thick wooden door. I leaned in close to her, ignoring the tug of the IV in my chest, and whispered, “Don’t tell Daddy!” At three years old, my mom was already my best friend.
We are “freakishly close.” My mother and I. I tell her everything, which I realize is odd for someone my age. We like to call ourselves the Gilmore Girls. It’s us against the world. Sure we don’t have the hundred- mile-an-hour banter down pat yet, and I still haven’t acquired a taste for coffee, but there’s no doubt there are similarities. I am the over-achieving, school-obsessed Rory, and she is my totally-awesome, life-loving Lorelei. We treasure our cozy pizza and movie nights, and dream of seeing the world together.
Crunch. Crunch. Crrrunch! The snow beneath my feet is unpredictable, supporting my weight in some places, and in others collapsing completely. Our mission: to cross the tundra that is the Exeter soccer field. It is slow going. With every other step, I find myself up to my knees in snow. Even our golden retriever, Ruby, isn’t enjoying her walk as much as usual. She plods behind in our footsteps, leaving the difficult work to us. Deceivingly steady footfalls give way to sinking collapses. Step by step, side by side, we start out on our expedition.
At three and a half years old, I was diagnosed with acute lymphoblastic leukemia. I underwent chemotherapy and went into remission, where I remained for nearly five years. I relapsed the summer after second grade. To completely eradicate the mutilated cells from my body, I had multiple surgeries, weeks of radiation, and barrels of Gatorade-colored chemo injected into me. I spent countless hours at Mass General Hospital, and for almost every one of those hours Mom was at my side. Like I said. Me and her. Against the world.
As long as she was there, and as long as the visits didn’t involve the “dizzy medicine” or too many unexpected tests, the overnight hospital stays weren’t that bad. I remember telling Mom this once before chemo treatment. She looked at me quizzically. “Really? Why?”
“Because, I feel like, when I’m there, everyone sort of treats me like I’m a princess,” I replied. And it was true. My favorite nurses, the child life specialist who worked in the playroom, even one of the cooks that frequently delivered my meals and snuck us extra desserts. But most of all, Mom made my experience in the hospital better than bearable, special even. We lived there for much of the time, and she turned it into strange home, splattering the room with color. Those overnight stays were almost like secret getaways where I got exclusive time with my favorite person.
I guarded this time together fiercely. My dad constantly offered to stay with me in the hospital so that my mom could spend more time with my baby brother and sleep in her own bed. But, I was stubborn. She was my knight, jester and beloved queen. She knew the drill. And we had secret traditions to uphold.
Mass General closed-circuit TV only had about ten channels, half of which were news. In the morning, cartoons were on PBS, but at night the options were much more limited. Mom and I learned to love the most absurd shows, such as Supermarket Sweep. Late at night, after Dad and Zach had left, along with the majority of doctors and nurses, Mom would curl up next to me in the dark, and we’d watch fools race around grocery stores for money. It was just one of the little luxuries of life stuck in the hospital that we discovered, just the two of us.
When I tell people that I had cancer, I feel as if I am just asking for their pity. And yes, it was horrible much of the time. Needles, surgeries, nausea, radiation, head rushes, losing my hair, feeling weak, being unable to walk, extremely high fevers. But, I know that I would not be nearly as close to my mother as I am today if we hadn’t gone through those experiences together. No matter how hard I try, I can’t fathom a life without her by my side.
“So, I don’t think you’re allowed to leave me next year,” Mom exclaims. Our march through the tundra isn’t getting any easier. The vast white plains seem to extend for miles ahead. “This means I’m going to have to live alone with just boys!” She looks over at me, pausing to give me a disgusted ‘they-have-cooties’ face. I chuckle.
“Yep” I reply. “I feel bad for you.” My foot plunges through the top layer of icy snow to yet another unseen hole in the ground. We are following the paths of two previous explorers, thinking it must be easier to follow in their footprints. The trails run parallel behind us, but out ahead they begin to diverge slightly.
I am not my mother. So many people after meeting us insist that we look exactly alike. But I don’t see myself as my Mom. Whereas I fantasize about fame, glam, and changing the world in one fell swoop, she is happy pleasing herself and the people around her, helping one person at a time. I prefer fantasy and sci-fi, and dreaming up new worlds, while she prefers memoirs and realistic fiction. However, she sparked my love of books and writing to begin with. She taught me that I have a voice worth hearing.
One night when all four of us were home together, our parents put me and my brother to bed. Feeling better than normal, I was bouncing around the bathroom and in the hallway with Zach before Mom and Dad made us retreat to our own rooms. It was the usual routine. Dad would lie with Zach while he fell asleep, and Mom would rub my back, usually until she fell asleep. She sang to me. Jonathan Edwards and Carole King were my lullabies. Her words would fade to whispers as she drifted into dream world.
On this night, before she turned off the lights, I rolled over and looked straight into her soft, blue eyes. “Mumma?” I asked. “Am I going to die?” The question had just occurred to me for the first time, and surprisingly, it didn’t scare me. But I wanted to know, and, no older than four, I looked for her guidance as I had with everything else. I knew she would have the answer, just like she had the answers to all the rest.
“Do you think you’re going to die?” She looked right back at me, never flinching or looking away. Her voice was tender, inquiring, soothing. She was asking me, I realized. And suddenly, the power had shifted over to me. My opinion mattered, in this moment, more than anything else. I had the last say, and my reply truly was the right answer.
“No.” And I didn’t.
I was absent for most of third grade, worn out from treatment, infections and trips to Boston. Even when I did make it in, I hardly ever stayed for the entire day. When I was home, I lived on the green woolen couch in our wine-colored living room. I watched endless hours of mindless television, too tired and queasy even to read my favorite books. Nancy Drew and Harry Potter – the mysteries remained unsolved.
The pile of schoolwork next to me grew higher and higher. I looked at it with disgust, as if I was staring at my own weakness. Used to being one of the smartest in the class, I had no idea what any of those handouts and worksheets were about. Dad encouraged me on the days when I didn’t go to school to try and make a dent in the pile, and I tried. But the lessons in the books were impenetrable, and my endurance never lasted long. Everything was different in my world. I was losing control. Even my room seemed like a distant memory. Dolls left untouched, and toys left unorganized. One time I crawled to the top of the stairs and cried. I was helpless and worn and everything in my own home seemed foreign, every task like work.
“Listen to your body.” Mom would say. I knew best what I could do, and therefore I had the last say. She gave me the power to stand up and speak for myself. I let the pile grow; resting was the first priority.
Throwing down my hundred-pound backpack, I made the house shake. Mom asked how my weekend looked, and I replied with the usual complaints and a long list of things to do. It’s the first week of winter term, but it feels like I never left. So much to do. So little time.
She looked at the backpack, bulging at the seams on the floor, and then up at my worn face. “I dare you, at some point before you graduate, to get a bad grade in a class.” Then she said, “Let’s take the dog for a walk in the snow.”
My mother is a free spirit. As my dad says, when he first met her she was a “granola.” Long, frizzy, dirty-blonde hair and baggy, earthy-toned clothes. She’s known since she was a toddler she wanted to be a teacher, and her passions have always been literature and writing. Although her hair is shorter now, and her clothes blend in a little better, my mother is still pretty much a hippie. Our house is filled with words: books, framed poetry, and wall hangings that say “believe,”“hope,” and “intend.” Peace signs and angel cards, heart-shaped rocks collected from the beach, and cairns. She is powerful and very opinionated. She isn’t afraid to share, argue and defend her claims before eventually agreeing to disagree. She believes in the power of intention; that if we just believe in something enough, it will happen.
“They’re slobs! And they’re going to drive me crazy! Who am I going to complain to once you’re gone?” Her voice is shrill, and slips even higher at the end as she pulls her foot out of a particularly deep footprint.
“I know, right?” Part of my sarcasm is lost as I call back to her. Her face has turned red from the effort. Our different routes have spread several feet apart now, and up ahead the crusty powder is almost untouched. The paths already trodden have all but disappeared. It’s up to us now to pave our own ways.
The hospital was an unanticipated safe-haven for us. Mom was less worried about something going wrong, and for me, the contrasts between sick and healthy became less apparent. When I was there, I could concentrate on getting better. I didn’t have to compare myself to my former self, or to others around me. In the hospital I was still weak, but no one saw it. Within those walls, I was normal, or better than normal, a princess.
I hated food. Another one of the glorious effects of chemotherapy is that it changes your taste buds. I lost half of by body weight. My favorite foods, pizza included, tasted simply wrong, and time after time, I struck out. I would have sudden epiphanies, when random meals or snacks would become obsessions. That one thing I hadn’t tried – it just might be the one thing that still tasted the same. Pasta with cheese and butter, goldfish (which my uncle went on a wild goose chase to find in Boston), chicken pot pie, and humus replaced pizza, grilled cheese, and peanut butter and jelly. Mom did whatever it took to get me to eat. Even if it meant strawberries and cool whip for lunch. I was the princess.
The princess sometimes had to leave the tower. Unlike the seventeenth and eighteenth floors that had become familiar and which were filled with smiling faces waiting to please me, the waiting and pre-surgery rooms on the lower floors of the hospital were scary. None of my little comforts were allowed in this cold, swift-moving wing. The moment we got there we were swept into a changing room where I had to strip off all of my own clothes and replace them with a stiff hospital gown that left me cold and exposed. My parents had to wear alienating blue scrubs and masks. The room down the hall was filled with machines, and abnormally tall hospital beds. Once I was placed on top of one, I was trapped. And everyone and everything whizzed along around me. The colorful bears and balloons painted on the walls were more creepy than comforting. A preschool gone wrong. Mom’s concerned eyes and liquid voice were my only consolations.
I despised the anesthesia and the entire prepping process. I was hysterical in my fear. I knew what was coming and I never got used to it. An alien doctor pulled up a stool and a syringe and ejected fluid into my IV that sent my head spinning. The medicine immediately vibrated the insides of my brains. Mom’s voice and firm hand in mine began to fade as I squeezed my eyes shut and struggled to remain conscious. I was leaving her, and there was nothing I could do about it. Washing away, it was all I could do to keep her there. I called out to her, begging for her to help me, to come to my rescue like always as I slipped away. “I’m diiiizzzzyyyyyy….!!!!”
I would awake from those artificial slumbers in a completely different place. The nurses once again were smiley and eager to provide ginger ale and saltine crackers. The happy bears were gone, and the world was no longer in a hurry to send me away. Post-op was filled with new faces, new setup, and new wallpaper. But she was still there by my side. I always came back, and she was always there waiting. Her tired face flush with relief. Her soft fingers laced with mine. When the groggy left my head, we started talking about the shopping trips that we would take after. Wherever I wanted to go. The Christmas Tree Shop was my reward.
I had a lot of nightmares when I was sick. I would wake up in my room at home, and have visions of giant alien monsters coming to get me. Sweaty, my heart pounding, and frozen with fear, I would scream and scream down the stairs, calling out for my Mommy, my savior. Enclosed in her arms, nothing could go wrong. I was safe from all the nightmares and from harsh reality as well. Vanquishing the monsters and returning to peace.
“Wanna Gee-Gee?” is a common question in our house. We own all the seasons, and have watched them all the way through multiple times. We plop down on the couch, and snuggle up under a blanket, our toes still cold from the walk. I switch on the DVD player, and we start belting out the theme song. “If you’re out on the road, feeling lonely and so cold…” She shivers as she takes a sip of hot tea, and we both smirk as we catch each other’s eyes.
It still hasn’t hit me yet that I am a senior. Although I am definitely beginning to understand senioritis, I haven’t really started thinking that much about leaving next year. I guess I am in denial. Although I spend the majority of my time on campus when school is in session, I am still a day student, and in many ways a homebody. I have left home before, for summer camp, and I know that I can make it on my own. I know I can carry the huge backpack around day after day. She has taught me to be strong. Still, I am afraid to leave her, to venture into the white unknown alone. My consolation is knowing that when I return, she will always be there, waiting. “Winter, spring, summer, or fall, all I’ve got to do is call, and she’ll be there.”
Emma and I on her 16th birthday.