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Caregivers and End-Stage Cancer

Tuesday, May 22, 2012

©Brenda Coffee. All rights reserved.

Last week’s blog about the will to survive Stage IV cancer resonated with many of you. The desire to see our children grow up, as well as our curiosity about what lies around the bend, are powerful adjuncts to cancer treatment. For those who have or have had cancer, have you ever thought about how an “I’ll do anything” to hold onto the reins of life may affect your caregivers? I’m hesitant to mention this topic, but because it’s another important elephant in the room no one talks about, here goes...<PREVIEWEND>

Cancer caregivers are encouraged to take good care of themselves: eat properly, exercise, get plenty of sleep and take a break now and then. On the flip side, caregivers are often criticized if they’re perceived to be having a “good time” while their loved one is suffering or dying, or after their loved one dies.

Last week I mentioned my visit with Alana Stewart, friend and caregiver to a seriously ill Farrah Fawcett. In my opinion, Alana’s friendship knows no bounds. All you have to do is read her daily journal from that time, My Journey with Farrah, and you’ll see a woman who literally gave up her life, for nearly three years, to be by Farrah’s side.

During one of their numerous trips to Germany for Farrah’s treatments, at Farrah’s urging, Alana, a single unattached woman, began a relationship with an Italian man. Based on much of the criticism Alana received when her book was released, you would have thought she’d hogtied and bull-whipped Mother Theresa. People called her selfish and in general, unloaded on her because she dared to reenter the world of the living while her Stage IV friend lay suffering in a German hospital.

If you’ve ever been a Stage IV caregiver, particularly an end-stage caregiver, and I have, then you know that life as you know it can vanish in a blink. Caregivers find themselves walking a fine, and sometimes lonely line between life and death. Being an end-stage caregiver is physically, mentally and emotionally exhausting. Days are often spent waiting to hear from doctors or the results of the latest scans; getting something to make your loved one more comfortable or just watching them breathe. There’s little time to go out for a sandwich or to stand in the sun, and if you do, it feels surreal to be in the land of the living, and it often makes you feel guilty. It’s difficult to remain cheerful, positive and in control of yourself and the situation. Your thoughts can run the gambit from wondering, “How will I make it when they’re gone?” or “How much longer will they live?” to “How much longer can I do this?” These feelings aren’t good, bad or selfish. They're human.

My intent with this post is to let any Stage IV and end-stage caregivers, who can relate to any of these feelings, know they’re not alone. Coming to terms with the fact that we’re going to die is a brave, solitary experience. For end-stage caregivers, the loss of a loved one is a process that goes on long after their family member is gone.

Is holding on to the reins of life, at all costs, a natural part of the will to live? Should we consider our caregivers before we tighten the grips on the reigns, and if so, does this mean we're not survivors? I don’t know all the answers, but I felt compelled to ask the questions.

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Stage IV Breast Cancer & The Will to Survive

Sunday, May 13, 2012

My lower back has been in excruciating pain since Thursday, and I can't get in to see "Dr. Magic Hands" until Monday afternoon. I hesitate to even mention this because many metastatic cancer patients endure far more than I am. In comparison, my back is not even a blip on their pendulum of physical and emotional pain.

I think about friends, like Donna Peach, who are enduring unimaginable pain and suffering due to Stage IV metastatic breast cancer treatments, and I wonder how they do it? Their will to live must be far greater than mine. Perhaps if James were still alive or if I had children, I would do anything to be with them, but James isn’t here, and I don’t have children, so I’m left wondering... What would I do in their position? Would I keep fighting and taking treatments that don’t give me a good quality of life?<PREVIEWEND>

I’d already begun writing this blog when I read “Your Silence Will Not Save You” by Katie Ford Hall at UneasyPink. She writes that when someone dies, we rarely know whether it was the cancer that killed them or the complications from treatment. She thinks it’s in everyone’s best interest to know how effective Stage IV treatments are, plus we should know more about the risks. I second that.

In 1987 my first husband, Philip, died from complications of an experimental Stage IV Lung cancer treatment. Even though it was administered daily, on an outpatient basis at the National Cancer Institute in Bethesda, Maryland, no one verbally told us what to expect. I’m certain complications were mentioned in the fine print on the treatment release forms Philip signed, but no one suggested any downside to treatment other than it might not work. Since it was experimental, I have to wonder whether his doctors even knew the risks? Of course none of that consoled me as I watched Philip die in the back of an ambulance after treatment.

At the suggestion of a mutual friend, I recently spent the afternoon with Alana Stewart, actress, Emmy-nominated producer and best friend extraordinaire to Farrah Fawcett. Alana’s book touched me deeply as she described nearly three years of accompanying Farrah to Germany for what would be numerous painful chemo embolizations, laser and ultrasound surgeries, radiation and blood clots, interspersed with marathon sessions of projectile vomiting. Soldiering on with an unflinching will, Farrah was courageous and hopeful, nearly to the end.

Perhaps I know too much about the odds of beating cancer to do what Farrah did; to be hopeful that I’d be the one in a zillion, megaball, Stage IV lottery winner who’s cured of their cancer. The will to do whatever it takes to survive and protect ourselves and our family is the strongest will there is, and yet, I'm not sure I would endure what many Stage IV cancer patients go through. It would be my fervent hope that a compassionate oncologist would tell me all the facts surrounding my options and quality of life. From what I know, palliative care may be the most loving and humane course of action, and in many cases, can prolong life better than experimental treatments.

If I’m faced with metastatic breast cancer, I know I will be hopeful about some things: that the lives of those I love will be blessed, and that Dr. Susan Love and her Army of Women will find the cause of breast cancer and develop a way to prevent it. We all desperately want a cure, but wouldn’t it be better not to worry about getting breast cancer in the first place? For me, that’s the ultimate survival.

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Where I Go to Meditate

Sunday, May 06, 2012

If you’re a regular reader then you know I embrace hypnosis, meditation and Guided Imagery as some of the most powerful weapons in our cancer-fighting arsenal. A recent dinner conversation with my friend, Nick, reminded me of one of my favorite places, Tulum. It’s where I frequently “go” when I need to get calm and centered and gather my strength. I found this piece about Tulum I wrote in 1992, that I was going to email Nick. I know it’s long, but I thought I’d share it with you as well. Where do you go when you meditate?

"The Place Where the Sky Was Born"
Sian Kaan is magical and mystical. The ancient Mayans said it was the place where the sky was born, ascending from the sea, soaring upward like a giant bird in flight. With each flap of its wings, the great bird painted broad strokes through the air, taking the blue from the sea and the white crest of the waves. Sian Kaan, together with the toucans and herons, the howler monkeys and jaguars, surround and protect my ancient Mayan city of Tulum.

Even the name, Tulum, fills me with wonder and reverence. The energy here vibrates in waves from the temple Castillo and rises and joins forces with the sea and the sky. It’s not a coincidence I’ve discovered Tulum. In some ways, I think it’s part of my past, part of who I am, and who I hope to be.<PREVIEWEND> Like a small sapling, I gather strength and nourishment from the sun and the sea. I’m drawn like a magnet, and I come here every day, preferably alone. When I return home to our villa, Tulum dominates my dreams where I go in meditative prayer to sit on the edge of temple Castillo to watch the sea and fill my soul with rapture.

I remember the first time I saw Tulum. We battled the dense geography of a three-canopy jungle, enduring mosquitoes so thick they hovered in clouds around our eyes and ears and filled our nostrils with a buzzing sensation that felt like a mild electrical shock. We worked most of the morning, chopping and hacking our way through vines as big around as our waist. Soaked to the skin with the salty taste of sweat and an insect repellent that served little purpose, we would turn around to look at our progress, only to find the jungle had removed all signs of our passage. It was as though nature was reminding us of our insignificance: Mere mortals, here for a fraction of a millisecond of God’s time.

At some point, the jungle gave way to a series of small lagoons and meandering palm trees. A cool breeze began to dry our skin, leaving small crusty patches of salt on our arms and legs. And then there it was, perched on the edge of a cliff; a small Mayan temple, towering above the sparkling white beach and azure blue of the Caribbean. Like a small child runs to the outstretched arms of a loving parent, I ran toward Tulum, momentarily stopping to trace the carved relief images in the stone with my fingers. Then inexplicably, I was drawn to the top of the temple.

I watched a native emerge from the jungle. Barefoot and brown skinned, he climbed to the top with ease and grace, then sat down next to me on the ledge overlooking the sea. His eyes were yellowed and smiling, playful and wise, welcoming me like he would an old friend who'd returned from a long journey.

Pretending to strum a guitar, he softly hummed an exotic melody. "The Murder of the Jaguar," he called it. A two-headed serpent sat on the rocks next to us, its tongues darting in and out of twin throats, hissing in a syncopated rhythm with the native's song. Perhaps the serpent was a descendant of the feathered snake god, Quetzalcoatl. Perhaps it was there to remind us of the beauty of its Mayan ancestors and the power of Tulum.

Twenty years later, I sit on the edge of the same temple Castillo as a barracuda cruises back and forth in Sian Kaan, the ocean waters below. I say the name over and over in my mind like a mantra. “Sh’an Ka'an.” The place where the sky was born. Overhead, a bird lets out a startled human-like cry. “The invaders are coming.” Behind me, bus loads of pale-skinned tourists with disposable cameras and fanny packs approach like bargain hunters at a garage sale, and I am reminded of a Joni Mitchell song, "Find paradise. Put up a parking lot."

I watch as a man and woman walk past the painted frescoes on a nearby temple. They ignore the faded colors that depict Itzamná, the sky god, and the rain god, Chac, together with the moon, the stars and the fish below. As the couple moves on, bits of their conversation drifts upward on the wind.

"You think they sell margaritas here?" the man asks. He’s wearing a Dallas Cowboys cap and a New Zealand Hard Rock Cafe T-shirt.

"I don't know," the woman replies, "but I hope they have someplace I can buy one of those little ceramic frogs."

I watch them hurry past and wonder if they “appreciated” the beauty of New Zealand as much as they appear to appreciate Tulum. I’m sad and somewhat depressed by the changes since my first visit, and I wish the jungle would close in around me, leaving only me, Tulum and Sian Kaan.

Like a time traveler, I would gather the energy around me and become part of the painted histories of warriors and virgins, princes and priests. I would enter hidden rooms filled with cups of hammered gold and necklaces of jade and obsidian, then emerge into the sunlight and ascend upward from the sea like a giant bird in flight.

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