Many years ago my husband and I welcomed our first daughter into the world and happily settled into our new family life. But somewhere along the way during those early times something got a little off-kilter and just as quickly as I had gotten it, I lost my parental footing. My energy waned alarmingly, and soon even the simplest tasks seemed too complicated to tackle. Trying to find logical explanations, my husband and I reasoned that perhaps I suffered from postpartum depression, mononucleosis, breast-feeding fatigue, anemia, or some other such thing.
What we failed to grasp until my night sweats and weight loss began was that while I had grown a vigorous and beautiful little baby girl, I had also produced an equally vigorous and much less beautiful lymphoma. It took root in my chest while Rose comfortably rested in my womb, and grew with such vigor that describing it brought to mind the fish that got away. It wasn't possible to simply stretch a finger and thumb apart to show the approximate size of the tumor; hands spread wide were a more accurate measure. And so the battle began.
There is an irony to living a life where the focus is on nurturing and sustaining one thing while aggressively killing the other, but my family, friends, and I took on the fight with all our might. Unfortunately, as little Rose grew, so did the lymphoma. Despite our best efforts, it seemed the lymphoma was determined to swallow me whole. After the oncologist calculated my five year survival odds to be hovering around 15 percent, I found myself on a bone marrow transplant unit that would be unrecognizable by current practice standards. Rose's developmental tasks began to differ from those of her preschool buddies. Along with putting on her own socks and shoes, she learned to put on a sterile air filter mask and gloves so she could visit the transplant unit. While her classmates learned to wash their hands long enough to sing the happy birthday song twice, Rose learned how to do a sterile scrub. She celebrated her fourth birthday on the transplant unit by wearing her favorite dress-up bridal gown, pushing my IV pole as we shuffled around the sterile hallway.
I am an occupational therapist, but I didn't have the luxury of occupational therapy services. I do know what I would have liked. I wouldn't have worried for one moment about whether I could manage my bowel and bladder schedule or tackle self-care needs which now included flushing out chemotherapy lines. With limited energy reserves and the threat of death looming on the horizon, I needed an OT to put on a war bonnet and jump into the battle with what remained of my wobbly-legged self. While I could put up with everyone's need to photograph me and wear that thin-lipped game-face when they came visiting, I needed an OT to help me write down some advice for Rose and to tell her all the stories I could muster. I needed somebody to agree with me that being in this terrible situation sucked and wasn't fair, and to help me plan my funeral and decide who was getting my art supplies. I needed to explain why I thought George was the cutest Beatle, how to make chocolate chip cookies using ground oatmeal, and list all of my dad's funny turns of speech.
Instead, an overworked nurse gave me a cast-off pink three-ring binder and some outmoded documentation forms to write on. Armed with these new supplies, I worked with an anti-emetic fueled vengeance, interspersing entries with careful drawings of my toothbrush, emesis basin, and IV pole. I wrote lists, pontificated, and gave knitting tips. And somewhere along the way God, Lady Luck, Medical Science, and I all joined hands and beat the lymphoma into submission. Wearing a shirt sporting an image of Gandhi and emblazoned with the slogan "Another Skinhead for Peace", I was wheeled in full bald-headed glory back to The Land of the Living.
Nowadays, dinnertime talks with our youngest daughter about my cancer experiences remind me a lot of my dad talking about World War II. She would rather negotiate for the latest smart phone, agree on fair bedtimes, and plan which piano song to play for her recital. And that's really what it's all about. If I had been allowed to determine what I wanted and needed from occupational therapy, I would have gladly wet my bed on a daily basis rather than lose a single moment of planning my remaining days in ways that reflected who I had been and expected to be.
Not long after our grown-up Rose had her day in a real bridal gown, I took out the old pink binder and gave it to her. I don't know if she read or shelved it with her college books, but that pink binder exists in all of its ragged glory to provide her with a record of life as we understood it during those thin-air times when she was too little to clearly remember or understand what was happening. Now I'm lucky enough to have lived another quarter of a century, still think George was the cutest Beatle, continue to make chocolate chip cookies with ground oatmeal, and have had enough living under my belt to fill up a binder for our youngest daughter Lily if I ever need to.
My husband and I still can't remember and don't care if I ever wet the bed.
Tina Fletcher is a 28-year Hodgkin's lymphoma survivor. She is an occupational therapy professor at Texas Woman's University and believes her experiences as a patient and survivor makes her a better therapist.