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Friday, November 1, 2019

Editor's Note: This is part of a series that Nancy will be doing on caregiving. Make sure to check back every Friday to see the rest of her blogs or find the complete list here.

Cancer caregivers live in the already and not yet. We live in between joy and pain, remission and recurrence. We know any moment can shift us from one side to the other.

May 21, 2001, began as the most joyous day of my life. That’s the day I became a mother. I had twins, a daughter we named Rebecca, and a son, Casey. More than anything, Brett and I hoped that the trauma of his cancer diagnosis and treatment would remain in the past. Not even the twins’ premature birth could dampen the excitement we felt for the future.

Later that day, Brett and I napped together in my twin hospital bed. We were in a groggy stupor when his cell phone rang.

“Hi, Dr. Balmaceda,” Brett said, as if he’d been struck by lightning.

He was silent. Dr. Balmaceda, his neuro-oncologist, had news about his recent MRI.

“What is it?” I yelled out to him.

I could tell that the doctor was making arrangements for more tests. The scan showed a tumor in Brett’s brain and at least one in his spine, as is common with medullas. Brett could barely look me in the eyes in the dawn of my motherhood.

I wrote about that tectonic-shifting moment in my book, From Both Sides Now: A True Story of Love, Loss and Bold Living.

My mind shut down. I can’t recall the immediate hysteria I must have felt, the betrayal, or the doubt that followed. Surely there was a mistake; the test should be redone. You were healthy, a father at last. Parenthood was our future—not cancer.

When I think back to this moment, when life collided with death, the abyss sucks me under. One moment we are on top of the mountain, having made the hard climb stronger and more whole. We stand appreciating the view until a vulture swoops down without warning and pushes us forward. We fall, and we keep falling.

My worst fear came true and it unraveled me. Never had I felt more vulnerable. For all my ability to manage competing demands in the past, I could barely return phone calls or pay bills. I wandered from room to room searching for my water glass, feeling frustrated and unhinged. In some ways, it was a blessing that the twins were infants because I could hold them without having to fish for the words or feelings. Never a talker, Brett was laser-focused on the task at hand—treatment. I went along with the plan because as long as we had concrete tasks to accomplish, we could still hope for a miracle.

As it happened, Rebecca and Casey remained at the hospital for six weeks under the ever-present care of the neonatal nurses. Brett, meanwhile, made the rounds at three different hospitals. Given the complexity of his case and the fact that there were no known protocols for adults with medullas, it was decided that Brett’s care plan shift to a pediatric oncologist. I spent my days going to various appointments with Brett and visiting the twins. It was a chaotic, disorienting time. Rebecca and Casey got stronger and healthier. Brett got sicker.

The question of cure was off the table. We were now dealing with Brett’s dim chance for survival. How long he had, no one could say.

To some, my story might feel extreme; I became a mother and learned that my husband’s cancer returned all on the same day. But sometimes in life we are challenged by joyful and sad events at once. This is especially true for cancer patients and caregivers since life seldom slows down while coping with an illness. Children reach new milestones. New career opportunities present themselves. Friends get married. Friends get divorced. Family members die.

There are no easy answers when dealing with a crisis. It took years for me to distill and integrate my hard experience into the frame of both sides now—a new way of seeing the world. Things would never feel certain and black and white again, just somewhere in-between. The “gray” of life became my new normal.

Suggested Resources:

Caregivers
www.CancerSupportCommunity.org/caregivers

Friends & Family
www.CancerSupportCommunity.org/family-and-friends

Brain and Spinal Cord Cancer
www.CancerSupportCommunity.org/brain-and-spinal-cord-tumors

Find Support
www.CancerSupportCommunity.org/find-support

MyLifeLine
www.MyLifeLine.org

Find a local CSC or Gilda's Club for support groups and other resources
www.CancerSupportCommunity.org/FindLocation

Category: Caregiving

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