Tag Archives: parenting through cancer

Duetting: Memoir 50

Duetting: Memoir 50 Robin Botie 0f Ithaca, New York, photoshops an image from a dream about dying.

“It would take a miracle,” the ICU nurses said about the possibility of my daughter’s recovery. But we’d seen Marika pull off miracles before. They said, “Each day on the respirator lessens the chance of her ever getting off.” She’d been under for almost two weeks. Her lungs had not responded to the special drugs they’d ordered. So the Roc Docs used something called PEEP to force oxygen through. Then a hole developed in her right lung.

Her father and I had agreed we would allow no painful interventions, but when Marika’s right lung started to collapse, we let them shove a chest tube between her ribs. A day later, when the short-lived victory from that procedure dissipated and the left lung started to go, we allowed them to plant another tube through her left side. Nothing helped. Her lungs were shot. We continued to hope and pray past the time the doctors would have quit, pulled the plug, and sent us home.

“When you start to hear the same grim prognosis from the four different teams of doctors, it will be time to consider withdrawing life support,” our social worker said.

Withdraw life support. Is that how it was to end? Like this was an everyday procedure— you either produced a miracle, like she’d been doing for the past three years, and get wheeled out of the ICU to the unit down the hall—or you died amidst Code Blue chaos with staff shoving the family out the door before scrambling around to resuscitate and electrocute—or you got unplugged. I hugged myself, and begged my beautiful girl, “Do something, Mareek. Do something NOW.”

We’d never talked about the healthcare proxy. Armed with little more than that signed piece of paper, I did not know how to begin to guess what Marika would want. Would she want to live if she couldn’t sing or walk? If she were tethered to oxygen tanks for the rest of her life, stuck with feeding tubes forever, would she want to go on? What if she was trapped inside her head, could think but not communicate, could feel pain but not move? When it comes to considering death, people grab at every grain of hope, giving up more and more of what they once felt was important for a good life. I was grasping for anything. I’d take meager crumbs. The dregs. But what would she want? Would Marika sit, strapped to a wheelchair with an oxygen tank, living on memories, and feel life was worth living? And not fight, forever, for more?

“She wants everything possible to be done to keep her alive, unless it becomes hopeless,” Rachel said when I called to tell her I didn’t think Marika would make it. “She also told me she doesn’t want to cause more suffering for her family and friends.” Marika said that?

“We should put her on a DNR status, Do Not Resuscitate. So if her heart stops, she won’t receive chest compressions or electric shock to re-start it,” Laurie said. “That would only cause more pain from broken ribs and wouldn’t preserve the quality of her life. But don’t give up on her yet. Her blood pressure is good, her kidneys and liver are working well. Her blood cells and platelets are coming up, so the transplant is working.”
“So we just need a miracle to remedy the small matter of her blasted lungs,” I said.
“She’s been at death’s door before,” Laurie reminded me, “and has pulled out a miracle and survived.”

The Roc Docs said she was sinking. It was just a matter of time. It was not presented to us as a choice: to pull the plug or not pull the plug.
“No, not yet,” I begged on Friday when she’d been pumped by PEEP for multiple days. “Give her the weekend,” I pleaded, clinging to Marika’s feet and urging everyone to whisper, in case she could hear.

On Tuesday, the first day of March 2011, the seventeenth day on sedation, the four teams, one by one, filed in and out saying, “Sorry.” I clutched Marika’s feet and rubbed madly. I watched the life I had guarded for almost twenty-one years drift farther beyond my reach. They’d given us all the extra time they could to wish for a miracle, and over the weekend hope had ebbed away like a receding tide. A strong current was pulling me out into uncharted waters, to a place no one I knew had been before. Whose child dies before their parent? I wondered. How could this be happening?

“It’s time,” I remembered my father announcing at his end.
“It’s time,” the social worker said.
Drained and defeated, Marika’s father and I finally both agreed. I said yes, and signed the paper that said my daughter’s life was to be ended.

My bedside notebook for recording dreams caught only nightmares then: I was fished out of rushing water, dripping wet, and hauled up to the whitewashed docks above by a rope. Caught. I knew I didn’t belong there, that being there meant I’d be executed on the spot. I huddled, cold, wet and miserable, trying to make myself small on the hard dock while my captors considered me. A sympathetic one pointed to a place just above my tailbone, urging the other to shoot there, where it would be kinder. Closing my eyes, I waited for the shot to shatter my bones and end my life…. Later that day, I realized that the tailbone area was where Marika got her spinal fluids drawn and chemo injected. Maybe this was really a dream about Marika. Even in my dreams I had a hard time separating her ordeal from my own.

The second day of March was barren and gray now that we had accepted there would be no more miracles. I moved like mud. Heavy, frozen, lifeless mud. Marika’s life would be taken the next day and I had a dilemma: to tell her or not.

Even heavily sedated, she might be conscious on some level, or in and out of consciousness. But if Marika couldn’t say anything, couldn’t say goodbye or “I love you,” if she wasn’t able to express anything or even move a muscle, what would she do with this information? For the first time ever, her father and I agreed immediately on something. We did not want her just lying there, drowning in fear and anger, unable to communicate. So we whispered and tiptoed around her, holding her hands and head. I did not tell her she was going to die.

What is the bigger tragedy: losing your loved one suddenly without a chance to say goodbye? Or knowing your loved one is close to death and not talking about it? I did not know how to talk about it. So I just stood there, silently, stroking her face with my eyes.

Much later, I would find these lines crossed out, in a song in one of Marika’s journals:
“My mama strokes my hair and tells me I’ll be fine now,
‘We gonna take care of you.’ But her eyes tell me she’s hiding a lie.”

We’d had a conversation or two when she was very young, about how not saying something is like lying. So I was lying. I was not being honest anyway.

There was more. Worse. What, later, I’d give anything to be able to rewind and replay: I did not tell her, “I love you.” As she drifted farther away from me, I did not dare say it. I hadn’t said it enough. Does it mean more when you say it less? Does it mean less when you say it more? And what did it mean to my precious girl that I didn’t say it at that time?

Because if I told her then, “I love you,” she would know it was the end.

 

 

 

Duetting: Memoir 47

Duetting: Memoir 47 Robin Botie of Ithaca, New York, photoshops her daughter who died of leukemia amid a screen of falling blood cells

Sometimes I got my life mixed up with my daughter’s life. Like whenever Marika’s blood was drawn, I felt the pain. And once, in the ICU, I watched the monitor display her racing heartbeat for so long, I had to be taken downstairs to the emergency room as my own heart quickened and surged. Marika was getting the transplant, but I was getting a severe panic attack. As we waited for the transplant, I had to remind myself to relax. To breathe.

Late in the afternoon on December 1, 2010, the Roc Docs entered our room looking defeated. I worried, maybe something had happened to our donor. Doc Phillips was back, heading the team. But he did not look like his jolly old self. He sat down heavily and began with a long sigh.
“You are no longer in remission,” he said to Marika. Remembering how we’d postponed the transplant for her concert, I couldn’t bear to look at her.
“So there’s no transplant?” I heard a small voice say. Was it mine? Or Marika’s?
“Things have changed. We do have some good news out of all of this. We have a silver lining,” he said, recovering some of his cheer. “A silver lining,” he repeated. We waited, shaken. “The presence of leukemic cells makes you ineligible for the donor transplant. But,” he said with a dramatic pause. “But, remember that collection of stem cells we harvested from you last March, after the arsenic treatments?”
“Yeah. And then I got leukemia again three months later,” Marika wailed.
“Well, the new plan is to give you an autologous transplant using those cells, your own harvested cells, in the next day or two. This won’t cure you, since you had leukemic cells shortly after the harvesting, but it can get you back into remission briefly. And then you can have the donor’s-cells transplant.” I hugged myself and wondered how many more months until we were on the way to being cured. Relapse number three, and it wasn’t even summer yet.

The autologous transplant was a quick, uneventful procedure, so at the end of the week I went home to Ithaca. When I returned on Sunday, an electronic piano had been moved into the hospital room. New posters were taped onto the wall opposite the bed. The place had a cozy, lived-in feeling, a look that smacked of exuberant festivities.

“How was your weekend?” I asked, trying not to sound overly nosy.
“Mouth sores,” she said gloomily, reminding me of Eeyore from Winnie the Pooh.
“Oh, I brought you Vitamin Water. Maybe that will help.” I unpacked food items, fresh laundry, and mail. Gift bags and an assortment of drinks from her father and his wife already lined the windowsill. A big shiny balloon sailed above the end of the bed, which meant Rachel had been there. I rarely saw Rachel anymore as she worked weekdays. She must have brought the half-eaten chocolate cake that sat on the bed-tray too. They’d had a big party here all weekend, and I got to come back to Eeyore.
“Can’t talk,” Marika said sullenly.
“That’s not good. Are they giving you lozenges or something?” I asked.
“Can’t swallow,” she said, grabbing the croissant I’d placed on her tray.

In the next few days her cell counts rose to acceptable levels and we went home for the holidays. Our donor, the complete stranger who was going to share his blood, rich with stem cells, so Marika could live, would wait for us. Again. For the end of January. I wrote and rewrote a thank you letter to him that the Roc Docs would deliver. The holidays sped by quickly. I celebrated everything I could. Chanukah, Christmas, Kwanzaa, the Winter Solstice. I made tiramisu. Marika and Greg took me out to Bandwagon, a new Ithaca restaurant and brewery. He bought dinner. She gave me her new CD. I gave them each hundred dollar bills wrapped in new gloves, with Chapsticks and chocolates.

“It’s not finished yet. The CD. There’s another song to be added,” Marika said. She sat across from me wearing a turquoise head wrap, large hoop earrings and eye make-up. She had a party planned for after dinner. Her friends were home from college, and she was cramming what she could into her nights. During the days she came home from Limbo to do laundry and sleep. She’d creep down the stairs every so often, “Mom, ‘s there anything to eat?” I loved that time before the donor transplant. It was peaceful. Quiet. Like the calm before a storm.

Deep, dirty snow mounded up along the roads in Rochester on the morning we arrived back at Strong for a full week of chemotherapy and radiation. I piled Marika’s belongings onto a stray wheelchair in the parking garage. My own things remained in the car to be unpacked later at Hope Lodge, the cancer families’ home away from home. I stashed away her bathrobe, slippers, and toiletries exactly where they were in the last room, and then, just as I pulled up a chair, Marika handed me a three-page typed document. Fumbling for my glasses, I saw it was a list of all the places in Rochester I could visit for free.

“You’re not staying,” she said firmly. “I don’t want you here all the time anymore.” For a few stunned seconds I stood there trying to collect myself.
“But your cancer is my cancer,” I whimpered.
“Mom. Get a life,” she blasted back. For a few more seconds I forgot to breathe.

“Okay, but I’ll be here every morning for the doctors’ rounds,” I said, “and then I’ll leave until dinnertime.” She loved her dinners. “And I’ll be on the treadmill in the family room for an hour after rounds each morning, if you need me—need something.” Despite my bruised feelings, I was gaining momentum. “Otherwise I’ll be at Hedonist Chocolates, Wegmans, The Owl House Café, or Dinosaur Barbecue,” I added, naming her favorite Rochester eateries, “or any of the places on this list.” The plan worked for two days, and then the effects of the radiation kicked in and things started to get scary. On the third day, after the morning rounds, she flashed me her pathetic puppy-face as I got ready to leave.
“Aren’t you gonna stay?” she begged.

 

 

 

Duetting: Memoir 30

Duetting: Memoir 30 Robin Botie of Ithaca, New York, photoshops her daughter's image under photograph of a handwritten poem superimposed with a typed poem, all about waking up and starting a new life.

Summer 2009 was gone. A second whole summer pirated away by mobs of mutinous white blood cells wreaking havoc with my daughter’s body. Marika had gone under sedation in an altered mental state—as my adoring three-year-old—and at the end of August came out of it, dazed but driven. Fifty-seven days in the hospital. In oblivion, mostly.

“Mom. You’re staring.”
“Sorry. It’s just good to see your eyes open again,” I said, not daring to ask how it felt to wake up near September when she’d lost consciousness in July. Or how it was to discover her friends engrossed in new movies, new music, and new relationships. To have gone to sleep skinny, and then wake up swollen. To find a fresh growth of hair instead of her balding head. To climb to her bedroom after being gone and find things moved, to find a huge pile of mail on the bed that hadn’t been slept in except by her cat that no longer seemed to recognize her. The Rip Van Winkle and Sleeping Beauty stories don’t take into account what it feels like to wake up and find a chunk of your life gone. And I never asked Marika. But much later, I would find her journals and the poem above, Wake Up, and stand in awe of her strength and resolve to pick herself up and build a new life. And when I felt my own losses were too much to bear, I remembered her indestructible hope, and kicked myself to reset my course and carry on.

 

Marika’s Journal, September, 2009:     

            I sometimes wonder if it was all a dream. I don’t feel as sick as most people think, but the doctors still advise me to “take it easy” and “lay low,” which makes living normally and finding a job or an apartment even harder. It feels like it was all a dream until I look at my pillbox. Twice a day (usually), I extract a dose of chemicals—poisons—to heal my would-be dying body.

            My health has improved, so it’s hard to even believe that I almost died three times, or that a few months ago, my once athletic body required two nurses in order to walk. I’ve had to relearn how to walk many times now. After being sedated for weeks on end, your body forgets, and your muscles shrink. What you’re left with is a bed-ridden, weak, catheter bearing, poor excuse for a human soul, who has a long road of walkers, falls, and chipped teeth ahead of it.

            I’m much better now, but I’m not “out of the woods” yet. I may be moving into an apartment with a puppy and starting over where I left my life. It’ll be different now.