Decades ago, self-isolating helped save my life. For one week each month, my husband cared for our children, who were 1, 3, and 5 at the time, while I navigated bottomed-out blood counts alone in my bedroom. Hairless and hungry for my children’s hugs, I threw them kisses from afar and watched their little fingers snatch the air to bring my love to their lips.
My hope of surviving cancer helped me keep my distance. Except once. I vividly remember listening to the giggles and splashes of our daughters in the bathtub and our baby’s babbling in the next room. A sudden bonk followed by wailing unhinged me. I escaped my bedroom and headed toward the distress. My husband, who had never raised his voice at me, roared: “Get away!”
Shaken, I retreated to my hideaway. Hours later, after my husband had tucked in our children, he softly bared his soul: “I can handle anything except you putting yourself at risk.”
Those words echo in my head as I self-isolate today. With a sense of déjà vu, I’m again throwing kisses from afar, only this time through a window to my young grandchildren.
My three children, now grown, all settled near me in Dallas and work full time. We have five grandchildren under 5, all of whom live within two miles of me. Before Covid-19, I used to see them daily, taking one or two (sometimes more) of them for breakfast or dinner.
Since I went into isolation when the news first hit — and before it was mandated — I’ve done FaceTime with the grandbabies every morning and evening. One daughter lives just four blocks away and takes her children on family walks almost daily. With a cue from a text message, I leave brown paper lunch sacks with the kids’ names on them by a flowerpot on my porch, each sack with a little treat. Usually slices of clementines and apples. Sometimes stickers or little toys I have around the house.
I peer out from my post to watch my grandchildren clamber up the front steps. I revel in their delight at the surprises inside. The giggles grow louder as, with sacks in hand, they search for me through the double-pane glass to show me their treasures. Even though they recognize the toys, they love them.
My arms ache to hold them close and feel their breath on my face. Meanwhile, in the bathroom by the bedroom, my kids’ old faded plastic waterwheel waits motionless in the tub. I won’t be giving my grandchildren baths here. Not today. Not tomorrow. Nobody knows when it will be safe for folks like me with immunodeficiency to venture out.
What am I supposed to do with the yearning to be close to my grandbabies? That’s a luxury I won’t indulge. Cancer taught me to focus on hope that helps.
In 1990, I was given a diagnosis of follicular non-Hodgkin lymphoma, a type of cancer with no known cure. Aggressive chemotherapy put it into remission, but for not quite a year. I then did radiation therapy and got a second remission. When the cancer recurred in 1993, standard options were palliative. What should I hope for?
Back then, the hope of research helped me find the courage needed to enroll in an early-phase trial. The investigational treatment helped me find hope of my illness having meaning because researchers might learn something valuable, even if I didn’t survive to see my oldest child graduate from elementary school. With no confidence in “tomorrow,” I hoped to embrace the parenting I could do “today” from a hospital bed a half a country away.
I became the 15th person in the Phase I study at Stanford of the first monoclonal antibody therapy used to try to treat cancer. The trial gave me a partial remission. Another trial gave me a brief remission. Another nine months of chemo gave me a longer remission. The good news is that since completing my ninth course of treatment from 2005 to 2007, I’ve been in complete remission.
For me, remission means living with aftereffects of all those treatments, including chronic fatigue, osteoporosis, cognitive issues and hypogammaglobulinemia requiring biweekly infusions of immunoglobulins. All that said, I have no complaints. I’ve loved my life.
And here I am, coping with this 21st-century pandemic by kissing grandchildren through glass. In 1993 I could never have imagined I’d be reading “Chicka Chicka Boom Boom” to my grandchildren over FaceTime.
Their innocent love reminds me that self-isolating offers the best way to fulfill my hope of surviving and of helping my husband and children. Meanwhile, I hope to open my eyes to the joys that remain and to savor each one. Just as cancer did years ago, Covid-19 is teaching me about both the fragility and the hopes of life, and with that knowledge to live most fully.
