The title of this piece might seem contradictory. Happiness is certainly not the first emotion that comes to mind when anyone thinks about being a caregiver to a loved one who has cancer. Fear, confusion, grief, anger, frustration, exhaustion – yes. But joy? Well, in my experience it’s also there, albeit hard to find. In writing this piece, I had to go right back to the beginning of my own story to figure it out.
My role as Caregiver began on the day my daughter Sara, aged 23, was diagnosed. In my memory of that day, she and I and her fiancé, Brad, are sitting in the office of our family doctor, Susan, waiting nervously for her to arrive with Sara’s test results.
“It’s not good news,” Susan says as she seats herself at her desk. “It’s malignant.”
Sara lets out a strangled laugh. Brad and I say nothing. Sara speaks first.
“If I have to have chemo, will my hair grow back curly?”
That makes Susan chuckle. Shocked, stunned, Brad and I are silent. It’s a scene from some dramatic horror story that we have been instantly thrust into, and no one has handed us the script. So we sit, watching, listening, afraid to open our mouths because we will only speak tears.
Everything is muffled, yet excruciatingly clear. I try desperately to hear the doctor’s words…grasping for something that sounds like “easily curable”, but she doesn’t say that. She says “treatable”.
A desmoplastic intra-abdominal small round blue cell tumour is the name of Sara’s cancer; an odd description for such a deadly foe. It sounds foreign. Alien. And it’s growing inside my daughter’s “healthy” body. I step into the role of Caregiver without hesitation, but I have no idea what it is going to entail. What do I do? What do I say? How do I give Sara what she needs? What is the next step?
I watch Susan’s pain in having to tell us this news. She is focused, thorough in her information, limited by this cancer’s rarity. Rare, treatable, chemo, surgery, stem cell replacement, 23 years old…how can this be happening? I am out of my realm of understanding. Sara has cancer.
At home, Sara looks at me, the fear in her blue eyes mirroring my own.
“Mom, I don’t want to die. I have too many things to see and do. I don’t want to die while you all live on without me. I’ll miss being there. I don’t know if I can stand to hear any more bad news. What if it is treatable, but not curable? What are the odds for recovery? I don’t want to know. What if they say 50/50? What if they say worse? How will Brad live on without me? Is Dad coming home from the ranch? Oh, this will be so hard on Jenny [her sister]. I must tell my friends…oh, hi, yeah, I haven’t seen you in awhile, how are you? Oh, me? Well, no, I got my test results back and I have cancer. Mom, I don’t want to die!”
Sara is talking as if she is already dying. I don’t try to convince her differently at this time. Intuitively I figure she has to say all this out loud, right away, to try to accept what’s happening to her. She needs to come to terms with the worst so she can deal with the battle ahead; she needs to find a reason to go on living.
“How do I live without a future”, she asks me. “If they tell me I have 5 years…how do I live with that?”
“Probably the future becomes whatever you have,” I suggest. “Whether you have five years, 95 years or three months…time becomes something different…”
“Gods, I don’t want to die,” she says. “I’m young…”
“Gods, I don’t want you to die either, Sara.” I hug her tight, tears streaming down my cheeks. “I wish I could take all of this and make it go away.” We hold each other and weep, together. I am so grateful that we can talk and listen to one another in this moment.
From the beginning of life with Sara, she has been a bit different: challenging, intelligent, beautiful, aggravating, funny, witty, lovable and, because we often think alike, easy to understand. She is always looking for the logic. However, this time there is no logical answer. She has cancer and that is the way it is. We are both feeling overwhelmed and exhausted…and this is only Day One. The future looms, frightening and confusing.
I hold Sara in my arms, much like I did when she was just a baby. I feel an unexpected flash of joy and gratitude, for the fact that she is at home with me and that at age 23 she still wants me to hold her close. For a brief moment, clarity lifts the curtain of confusion. Right now, holding Sara close to my heart, her soft breath mingling with mine, I am calm and hopeful. No matter what comes, I know that loving Sara will always take me to my happy place.
Now, many years later, that is still true. Sara’s journey with cancer – and my journey as her mother and one of her caregivers – was filled with confusion and fear and grief, but there was also joy. Learning to find those moments and live them fully is an ongoing part of the adventure, but the challenge is different for everyone. To the caregivers reading this: I would love to hear your stories. What makes you happy in the midst of all the pain and hard work? What “bits of joy” have you found on this journey?
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Pat Taylor is a producer, writer, director, performer and educator whose credits include documentary films, television specials, plays, musicals, short stories, music videos and major tourist attractions. She is also a mother and parent advocate for young adult cancer patients, and the founder of Chasing Rainbows Young Adult Cancer Advocacy, an initiative dedicated to discovering and distributing multi-media support materials for young adults with cancer, and facilitating young adult voices in the cancer community. Pat has produced two documentary films, Sara’s Story and Chasing Rainbows: Young Adults Living With Cancer (both of which feature young adults ages 19 to 29 “living life while fighting for it!”), and has researched and helped to promote many other film resources produced by and for young adults with cancer. “Whether you are a family member, friend or health care provider, it is often difficult to know which way to turn, what to say or how or when to say it…when to offer help and when to step back. As the CKN Caregiver Section Editor, it is my intent that we share our individual stories, confusions, insights and hindsights so we might help one another not only navigate the complexities of a “road trip” of this nature, but also celebrate with one another the precious moments filled with love and joy that give us the strength to travel along with our loved ones on the journey from beginning to end.”