When to Say When

When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.

In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.

Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.

We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.

This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.

Stopping cancer treatments is a difficult and painful decision.  Have you experienced something similar?

Death With Dignity

I’ve seen this story all over the news for the past week and decided that I could no longer stay silent.  Lacuna Loft needed to add something to the cultural conversation here about allowing people to experience death with dignity…that everyone deserves the cancer community’s unconditional support regardless of your feelings on their choices.

A 29 year old woman, Brittany Maynard was diagnosed with a Stage IV Glioblastoma.  She has decided that she will end her life with dignity when the time is right for her.

I think that all should remember that this story is heartbreaking.  The death of a loved one, whether by natural causes or death with dignity, is heartbreaking.

My mother had this same cancer.  She lived 18 months past her diagnosis.  I’m not sure I would have agreed with her if she had made the same decision as Brittany but allowing my mother to die at her own pace was also the most difficult thing I have ever experienced.

To learn more about Brittany’s story follow this link.

Brittany, please know we are all behind you.

Happy Birthday Mom

Today, my mother would have been 58 years old and my parents would have been married 36 years.  We post a variety of personal stories here on Lacuna Loft, focusing on caregivers, survivors, and fighters.  My mother is a huge part of my personal story even though she wasn’t able to be here during my cancer diagnosis or treatment.  She wasn’t a young adult cancer fighter but she was too young and a cancer fighter all the same…and I was proud to be her caregiver.  I think about her everyday and I miss her.

Family christmas 2008

Living With The Dying: What Every Caregiver Ought to Know by @jcutlerlopez

In April 2005 my boyfriend Jacques flew from Halifax to California to be with his mom Peg as she underwent surgery. She was convinced three months of stomach pain meant she contracted parasites on one of her trips overseas but her doctor insisted they open her up. Less than a year later, Peg was my mother-in-law and Jacques and I left our jobs in Canada to live with her in Napa. Peg had stage IV colon cancer. Here is what I learned as her caregiver…what every caregiver ought to know.

1.       Your Opinions Don’t Matter

Peg refused surgery, chemotherapy, radiation, and oncologists.  Instead, she gave up wheat and meat, drinking her calories – about 400 a day – most of it kefir: a fermented milk drink made with a bacterial starter of kefir grains.

Three times a week, we drove an hour through wine country to a private clinic. No ordinary clinic: this one claimed to cure cancer and epilepsy using intravenous treatments of albumium: a protein produced by human livers and found in egg whites. Security was high. To enter the waiting room, the no-nonsense receptionist required official i.d. and disclosure of employment; officers of the law and government officials not permitted. Only once before leaving Peg for her 6 hour treatment, the receptionist allowed me to use the bathroom beyond the key-code door. The long hallway to the bathroom pulsated with a quiet anxiety and through an open door I glimpsed a young boy dressed in black lying in a tiny windowless room, an IV strapped to his arm.

Peg — the woman who fought traditional gender roles to achieve higher education and a lifetime of experience in foreign countries — didn’t matter to the clinic.

Peg — the dying woman with life-savings — interested the salesmen selling snake oil.

The injustice angered me.

She might as well ignite a bonfire of cash in the backyard three times a week for all the clinic did for her.  But no matter: if these quacks were simply well-dressed pirates stealing the pennies off a dead man’s eyes, Peg’s family still insisted we support her journey.

Because it wasn’t about if the treatments worked; it was about allowing Peg a last experiment, a last surge of hope.

2.       You work full-time hours

Tension in the house reached an all-time high by March 2006. Three months after our move to California, we were on a round-the-clock schedule.

While Peg was still able to walk and visit the clinic, we cleaned her childhood home. We started by clearing paths through generations of clutter: decades of bags filled with paperback books, craft supplies, dusty wine bottles, wooden trinkets, boxes – you name it we moved it – to reach the table of medications, vitamins, and ayurvedic concoctions. We pushed aside stacked jars and bottled fruit littering the kitchen floor to blend kefir shakes. We made sure Peg wouldn’t trip as she walked to the bathroom and the lazy boy in the living room. Jacques and I met in the kitchen to eat a late dinner surrounded by cookware, stacked chairs and tables, utensils hanging from the walls, fruit baskets and dying jade plants hanging from the ceilings, family life bringing us closer than we ever imagined.

We ran errands around northern California looking for Tachyon drops to charge Peg’s water with what the company claimed were ‘subtle organizing energy fields’ to bypass blockages and turn your body into a super conductor. We grocery shopped. We went on wild goose chases for tinctures. We fielded calls. We welcomed guests. We cleaned clothes and sheets. We bought and eventually administered medication.

The tumors spread, Peg’s liver began to shut down and we rented a hospital bed to help her mobility and reduce bed sores. That narrow bed squeezed between her queen size bed and antique bureau became Peg’s universe as she morphed from a strong, opinionated woman to a bony shadow unable to make sense of a morphine-muffled world.  In the weeks before she died, a tumor grew in her cheek, pushing on her eyeball. Her eyes large blue marbles – drained of their past light – closed as she held my hand, her words slurring as she whispered “It’ll be a blessing when I go.”

Peg hated the dark confusion of the morphine, becoming afraid of the long nights. It was then we began to measure life in twenty-four hour shifts, someone always at Peg’s bedside. The hiss of the oxygen machine and the rainy winter nights closed in on us until the relief of dawn’s grey light outlined Peg’s sleeping body; the shape of pill bottles, Kleenex boxes, water bottles, dirty juice glasses appearing in the light and we’d shake off the night and busy ourselves with cleaning up before starting the next round of shakes, medication, sheet and clothing changes, phone calls, and visitors.

3.       Death is Anti-Climatic

One day in late March just as the magnolias began to bloom and the smell of roses drifted inside from the garden, Peg slipped away in her sleep. We called hospice and a woman came to help me clean and dress Peg’s body for cremation. As we moved her, Peg groaned and my heart jumped into my throat. “She’s not dead. She’s ok.” But it was just a release of air from her windpipe.

The hospice worker and I changed Peg into a burgundy shirt and flower skirt and wrapped her in the Tibetan flag set aside a month beforehand.  Two young men from the crematorium showed up an hour later. I remember them as Grim Reapers. Faceless. Quiet. Detached. Lifting her onto the stretcher, rolling her down the hallway through the door to what looked like a small moving truck, its doors slamming shut with finality. I drifted behind them, barefoot, wandering down the sidewalk until the driver jumped behind the wheel. I opened my mouth to yell for them to stop. But instead I just stood on the concrete watching the truck disappear around the corner, not wanting to go back inside the house ever again.

The next night we picked up pizza. Jacques drove over the speed limit, braking suddenly at red lights, neither of us speaking. The purple hills of Napa’s twilight reflected in the river like every other evening. At the pizza place, people waited for their orders; kids talked on their cell phones; arcade games repeated their jingles. A woman made a fuss, arguing the cashier shorted her fifty cents. And the world continued on just like nothing had happened.

4.       Grief Wears Many Hats

There was no cremation viewing. There was no funeral.

I cried a little here and there but I wept the first time we visited Peg’s site at Arlington National Cemetery six year later.

My immediate grief showed in other ways. Translucent spots floated in front of me, the first sign of migraines. I woke in the middle of the night, jumping out of bed in the dark, gasping for air wondering where I was, who was snoring next to me. I’d panic, stumbling around until I grasped a curtain or a door handle to let in some light.

I felt relief it was all over. I experienced intense guilt over the relief. And I still have full-color heart-pounding nightmares where Peg visits me, angry at me for cleaning out her house after she died.

In his widely acclaimed book The Will of the Storyteller, Albert Frank writes about the period of adjustment after an illness, a period of loss:

                To adjust too rapidly is to treat the loss as simply an incident from which one can bounce back. Only through the mourning can we find a life on the other side of loss. The losses you go through are real, and no one should take these away from you. They are a part of your experience, and you are entitled to them.

5.       Lessons Become Clear Later On

When you turn the page on life-changing circumstances, it’s not an epilogue; it’s the next chapter. But turning that page takes a long time — much longer than I expected.

Mallory wrote a post entitled The Process of Surviving earlier this year. It places illness and survival as ongoing themes throughout life, not chapters we move on from after someone dies or after we receive a clean bill of health.

The lessons I learned as a caregiver changed me forever. I grieved for many years; in some ways I always will but now eight years after those months with Peg, I’m thankful I had the chance to hold her hand, to be the last person to help her after death, the last one to touch her before she left our lives forever. And the lessons I learned from her final months are with me for a lifetime.

jenny 2

Jenny is a Canadian living in Virginia with her husband, two kids, and two black cats. Her latest book Who I Am: American Scar Stories launches 2 June 2014.

To find out more information or to join the American Scar Stories community, check out www.jennycutlerlopez.com.

You can find quotes, portraits, and scar info at the book’s official Facebook page.

Semi-humorous and informative tweets for readers and writers @jcutlerlopez.