Sounds and Silence

Frosted leaves

In autumn, before the snow falls, winter’s quiet seeps into the upper Hood River Valley. Frosty winds strip the trees of their rustle and choirs of crickets cease to sing.

Intruders trespass upon the calm. Migrating grosbeaks strip the elderberry bushes of ripened fruit. The cacophony of their chatter shatters the silence. Abruptly, they depart, leaving behind what cannot be harvested for their journey: a muted forest and hushed meadows.

And, in the Lost Lake Canyon, west of our home, the brittle air crackles with the sound of  rifle shots. Though I am not a hunter, I accept the sound as an ordinary noise of the season. Hunting is a sacred ritual of country life.

One afternoon, late in November, I climbed atop the roof of my house. I had my own seasonal ritual in which to participate: the rain gutters needed cleaning. From that height, I could see the entire length of my curving driveway, a driveway that seems to have grown through the years. Several times, when I was younger, I recall clearing it of snow by hand. It is a preposterous memory, given age and the state of my health.

White Bark Birch

On the roof, I flushed shingle gravel from the gutters with a hose. I freed the downspouts of clogs caused by leaf litter. Gazing out over the pasture I realized that silence is literally golden this time of year. Tawny field grasses shine in the oblique sunlight. My white bark birch, the final tree to lose foliage, shimmered with precious gold leaf.

That day, though, my tranquility broke with the sound of semi-automatic gunfire, far away in the National Forest. The initial staccato burst surprised me. The continuing rapid fire, magazine after magazine, made me uncomfortable. Surely, it was not a hunter. More likely, someone chose the crisp day to perfect the handling of his or her extraordinary weapon.

I finished my chore, nervous but alert. How ironic, I thought, to be killed by a stray bullet after surviving so long against an incurable cancer, multiple myeloma. I descended the ladder to lower ground and the shelter of the house. Atop the roof, I’d felt vulnerable and exposed, relying, as it was, on the decision making of someone with unbridled power.

Three weeks later, on December 14^th, that same sound of semi-automatic gunfire broke the heart of our nation. On that day, a young man, armed with an assault rifle, murdered 20 grade school children and six school employees at Sandy Hook Elementary School in Newtown, Connecticut.

A road near my house

Imagining the incongruity between the sounds of children mixed with the sound made by such gunfire leaves us aghast with horror. Many Americans believe banning assault weapons will make the world safer. Others think armed guards in school are the answer. We have a choice: to continue doing what is not working or to open ourselves up to a better way.

This New Year’s Eve, I wrote late into the night, trying to understand what I felt about this reprehensible act. Normally, I’d be sleeping. But New Year’s coincided with the day I take steroids for my cancer. A 20 mg dose causes insomnia for a day or two. Firecrackers (I hope) rattled the stillness of the winter evening. This too is a ritual, one that commemorates a new beginning, an opportunity for change.

I worked well past the midnight hour. My cat, Spanky, lay peacefully curled in my lap. Perhaps 2013 will bring us a safer world. A world that appreciates silence for its repose rather than the silence of our collective shame should we fail to act.

Raking Leaves

“There’s a reason you can learn from everything: you have basic wisdom, basic intelligence, and basic goodness.”

Pema Chodron

Spider Webs

Autumn arrived. Outside, the maple trees turned from green to crimson and gold. Their coat of leaves drifted with the wind and tumbled to earth. Undressed, the bare branches revealed damage from last winter’s ice storm: broken boughs, asymmetrical growth, and scabbed bark. Nature, with its flair for serendipity, transformed the skeletal imperfections. Now, the trees act as scaffolds to support the silk castings of fall spiders. Backlit by the morning sun, these shine like spun silver.

My appreciation for the beauty of the natural world is tempered by my health. I have a blood cancer, multiple myeloma. The disease environment in which I now live comes with complications. In the last five years I received treatments aimed at reducing the damage caused by this incurable malignancy. The cancer markers remain stable following extraordinary chemotherapy and an autologous stem cell transplant. I continue to take low dose oral chemo and steroids. I am healthy… after a fashion.

Autumn Colors 10-25-2012

At this point in the disease milieu, my concern is fatigue. Since diagnosis in 2007, I have endured a low-grade anemia. The cancer is the biggest culprit for this condition due to imbalances between red, white, and platelet blood cells. However, the drugs, for different reasons, also contribute to my inconsistent stamina. And then, of course, there’s my age, sixty-six.

Accordingly, I pace myself with autumn chores. Tilling, pruning, and raking come with the season. Some days, my energy slumps. Other days, due to steroids, my endurance soars. In such circumstances, it’s easy to over exert myself. In fact, I have done so on more than one occasion, leading to a strained back. Therefore, it is incumbent on me to manage the fatigue. Restraint and timing are my friends.

Autumn Colors 11-06-2012

Still, the multitude of leaves must be addressed. I gather them on a large tarp and drag the collection to the gardens for mulch. I limit myself to an hour’s worth of effort. This work is a gift disguised as tedium. The scuttle of a metal rake on the desiccated leaf litter mesmerizes me. The crisp autumn air, pungent with decaying leaves, is intoxicating. I am drunk with solitude and the seamless progression of one season to the next.

I accept my illness as part of the overall order. It is not an anomaly, a mistake, or a bad break. It is here to stay. I must live life with dignity similar to that exuded by the damaged trees persevering on my land. Nature transformed their calamity into renewal. Why, I ask, can’t I do the same?

Giving The Rake A Rest

Do I consider my cancer to be a gift? Hmm… I don’t know. I have acquaintances whose illness follows a path full of fear and pain. They might wrinkle their nose at such an assertion. Harsh lessons do not guarantee a positive metamorphosis. Nonetheless, I understand the sentiment when others express it, for my illness is not devoid of rewards.

One thing is certain; cancer puts me in contact with an emotional core that focuses my attention on what is important. I am more forgiving of others and myself. If that helps me mitigate some of cancer’s ugliness, then maybe I’ve learned something, not to mention that raking leaves is a lot more interesting.

Opportunity

Coreopsis and Valerian

In front of my house is a crescent shaped perennial garden. Though small in size, it gives me endless entertainment, both in tending to its needs and musing on its ecology.

Each spring I purchase a sampler of perennials. Every year brings surprises. 2012 gave me a complementary trio of color with coreopsis, valerian, and Lucifer’s tongue.

The irrigation for the yard comes from a funky system, gravity fed from a stream that is miles away. The ancient metal pipe narrows on its descent to our property. Once here, it attaches to an even smaller plastic pipe generating pressure adequate enough to water our trees and gardens. Radiator clamps hold the fittings together.

Froggy’s Home

The two hose bibs I use to water the garden both leak. It’s not enough to cause a puddle but the soil next to the pipe stays moist through the dry season and supports a healthy ground cover. Two large rhododendrons shade the damp spots, creating an environment sufficiently wet to attract a frog.

No doubt, my cold blooded pioneer smelled the water and hopped toward the opportunity. The habitat seems to suit him, as this is the third year I’ve heard his distressed gargle of a croak. And, why not, the flowers attract bugs, the soil is wet enough for his amphibious jacket, and there are no snakes seeking their own opportunities. He’s found balanced natural surroundings that support his needs.

The microenvironment of our bone marrow has similar characteristics. It consists of a moist fertile soil that nurtures all the components of our blood system. The rich environment serves as a safe haven for normal blood cells, and ironically, for malignant cells as well.

Another seasonal visitor

The cancer I have is multiple myeloma. The malignancy is specific to plasma cells, a variety of white cell critical to maintaining a healthy immune system. Patients diagnosed with the precursor MGUS, may harbor cancerous cells for years without treatment. The cozy environs of our bone marrow support this phenomenon.

The same can be said for those with smoldering or indolent myeloma. However, without treatment, these stages of the disease compromise the bone marrow environment. The loss of ecological balance leads to systemic problems.

Why do the plasma cells become malignant in the first place? Researchers don’t know for certain. Some patients may be predisposed due to irregularities in their DNA. Others may have experienced exposure to toxins in the larger environment that led to errors as blood stem cells created new supplies.

Cosmos and Baby’s Breath

Cancer, like my extraordinary garden frog, migrates to opportunity. The perfect correlation of elements appeared in my garden and matched a frog’s adaptive purpose. That symmetry is essential to life. Cancer, on the other hand, finds opportunity in weakness. And, left unchecked, it upsets the symmetry wherever it appears.

Last evening, I drenched the area by the rhododendrons. I was anticipating the 90-degree temperatures forecast for today. When finally, I shut off the sprinkler, my amphibious friend emitted a single croak. I realize his indifference to my activities. Nonetheless, I’ll accept this announcement as a thank you.

Star Gazing

Venus and Jupiter in the morning sky

Lately, the morning sky has drawn me outdoors before first light. There, under the comfort of a blanket, I recline in a deck chair on the front porch. The planets Venus and Jupiter are prominent out east this month. And, due to the absence of streetlights in our remote part of the Hood River Valley, an unfathomable array of stars glitter on these moonless nights.

Without fail, my cat Spanky joins me, propping himself like a sentinel on my lap. Together, we watch the day awaken. His hearing alerts me to activity before I can see it. As the darkness recedes, the drone of night crickets is joined by a melody of bird song; Mozart on a branch. Then the stars, one by one, wink and vanish into the cloak of bluing sky.

Spanky resting in the shade

Star gazing at 4 am is a luxury of retirement. My pension is modest but I am wealthy with the time to enjoy the wonders of life. Some days feel downright decadent. I read and nap without a concern for the time. Occasionally, I wear my pajamas until the middle of the afternoon. Guilt teases me. Like a mosquito, it buzzes my conscience so accustomed to years of working the 9 to 5. Still, I’m comfortable doing what I do best: nothing.

Perhaps this attitude constitutes what might be termed the “retirement honeymoon.” Maybe. I can’t say if this state of mind will last another five months, five years, or longer. However, if living with an incurable cancer has any redeeming features, then the understanding of the relative importance of things is high atop the list. Accordingly, the self indulgent activities: mystery novels or long catnaps with Spanky, to name just a couple, come with a sense of value that borders on entitlement.

More wonders of the universe

August 28th marks four years since my stem cell transplant to suppress the blood cancer, multiple myeloma. I am healthy. I manage the side effects of oral chemo much better now that I am not working. Most people would have no idea that cancer is a part of my otherwise idyllic life. Still, I know that the malignancy, which comprises a portion of the innumerable blood cells in my body, continues to percolate in my marrow. It’s like those stars that disappear with the sunrise. You can’t see them any longer, but they are still there.

Recently, I read, “A characteristic feature of multiple myeloma is that the disease enters a stable, or ‘plateau’ phase – during which time the patient is well, requires no treatment, and measurable disease indicators are stable. This phase typically lasts 12 to 40 months but it can be 10 to 15 years or more.” 

Flowers in my yard

That is quite a spread of optimistic supposition. My latest monthly visit with Dr. M confirmed that my disease fits into the above description. Technically, I am not in remission because I need a maintenance dose of oral chemo to slow the cancer’s growth. My quality of life, however, is high. I’ve pursued conventional therapies. I’ve responded well. Additional options, if necessary, wait.

Like it or not, my retirement honeymoon and disease plateau phase seem to be dancing together. It’s a clumsy pairing. They step on each other’s toes. They don’t always get the sequences just right. Both rely more on luck than design in anticipating the other’s movements. But there’s no letting go.

The north face of Mt. Hood seen from Cloud Cap

In the meantime, I’ll enjoy the night sky. The celestial bodies, though vast in number, are nonetheless more predictable than biology. I know exactly where to find Jupiter and Venus as they perform their own heavenly dance across the eastern sky. On the other hand, the volatility of disease behavior, lends itself to broad generalizations, a fair amount of guesswork, and lots of hope.

Care Giving

“Genes are like the story and DNA is the language that the story is written in.”

Sam Kean, The Violinist’s Thumb

Summer Clouds

Recently, I traveled to Portland, OR for my monthly multiple myeloma support group meeting. In the course of the last 3+ years I have solidified friendships with several other members. We know much of each other’s cancer story. Before and after the meeting, we make time to catch up on the myriad developments in our treatment.

This meeting featured none other than my own oncologist, Dr. M. He delivered a presentation based on the latest research from the American Society of Clinical Oncology. In keeping with recent trends, ASCO revealed further evidence of drugs that may soon be available to fight myeloma.

The percentage of patients responding to trial protocols impresses those of us with MM. Survival times creep forward as researchers find diverse ways to suppress the malignant plasma cells. Still, it’s easy to become sedated by the minutiae of clinical trials. After discarding the chaff of numbers, two clear messages about the status of our disease remained: the search for curative solutions continues to progress, but ultimately, nearly all MMers relapse.

Pathway outside our back door.

Dr. M explained this situation by noting that myeloma is a genetically complicated disease. He drew a comparison with chronic myologenous leukemia. CML patients, due to the discovery of Gleevec, enjoy a high rate of cure for this once deadly cancer. The biology of CML is simpler than that of MM. In CML, a specific enzyme in white blood cells is locked in an activated form. This causes the excessive proliferation and high white blood cell count characteristic of the cancer. Gleevec, binds to the site of the enzyme and prevents its activity, causing tumor cell death.

The genetic intricacy of MM does not lend itself to such easy remedies. While Gleevec can focus in on the single weakness in CML, multiple myeloma has a more sturdy biology. It is smart. It finds its way around blocked pathways in order to continue cloning itself. Currently, targeted therapies don’t exist because the target cannot be found.

White Oriental Poppy in my garden

Novel agents, such as revlimid and velcade, suppress the tumor burden but these drugs are broad-spectrum cell killers. Their specificity leaves something to be desired. Relapse occurs because cancer cells that are genetically resistant to a drug outgrow all the nonresistant cells.

One of our support group members, K, introduced Dr. M. Her husband was a patient of Dr. M for six years. Last year his MM took an aggressive turn. All attempts to stifle the cancer failed and he passed away early in the winter of 2011. Her husband was a Buddhist. Many members of our group, as well as Dr. M, attended the traditional and moving ceremony held at his temple in Portland.

In spite of her loss, K remains committed to our group. She utilizes her background in graphic design to prepare meeting announcements. She also writes a caregiver’s blog for the International Myeloma Foundation. And, she was instrumental in getting Dr. M to speak with us. K’s testimonial to Dr. M spoke to the high regard in which colleagues and patients hold him.

A bouquet of wildflowers in the garden

Obviously, doctors cannot fight our battles for us. Dr. M is a clinician, not a researcher. He will not discover the cure. However, the quality of his caring matters. Compassion has healing attributes. It may not mend the body, but it can protect our soul as we brawl with the biology of MM.

Eventually, a pharmaceutical like Gleevec may unravel the mysteries of multiple myeloma’s DNA. Truly, the best is yet to come. In the meantime, individuals such as Dr. M and K illustrate that care giving is also a powerful drug. Injecting a heavy dose of dignity into the heart and mind of another person has no adverse side effects. You don’t need insurance or a prescription. Furthermore, a clinical trial is not necessary to evaluate how it improves the quality of life. It just works.

Good Books

Yellow iris with a scarlet tongue

I have multiple myeloma, a cancer that affects the plasma cells in my blood. The initial diagnosis occurred in December of 2007. So, it’s been four years and seven months. My first doctor gave me five years to live; the second opinion I received generously offered six years. In retrospect, both those prognoses seem pessimistic. I plan to be around longer than originally expected.

As of June 21, 2012, it has been one thousand three hundred and ninety four days since I underwent an autologous stem cell transplant at the Seattle Cancer Care Alliance. Following that high-dose chemotherapy, I enjoyed a drug holiday for 30 months.

In January of 2011, my doctor prescribed revlimid, an immunomodulatory drug, to counteract renewed activity in my cancer. Last fall, we agreed to add the steroid, dexamethasone, to my treatment. The theory behind drug “cocktails” suggests that as the cancer finds a pathway around one drug, it is held in check by the other, which targets a different aspect of the malignant cells.

Close up of a Chinese Maple after a Spring rain

Recently, I heard a comment from an individual who is dealing with a serious development in his cancer. The disease had metastasized, spreading beyond its source. His story is a cascading series of bad news, week after week. The prognosis is grim. Yet, tongue in cheek, he pleaded, “I’m tired of having cancer. Can I please have something else?”

Those of us with cancer have a right to protest. The complaining helps us cope. For even when favorable circumstances exist, such as I enjoy, cancer can still be an exhausting companion. Siddhartha Mukherjee explains the problem in an article from The New York Times Magazine titled, The Cancer Sleeper Cell. “In a cancer cell, ____ the accelerators of growth are jammed permanently on, the brakes permanently off. The result is a cell that does not know how to stop growing.”

Daisies in the morning

For me, the nuisance factor keeps demanding my attention. My eyes, my energy level, and my feet trouble me. Because the cancer remains relatively stable, I take these changes in stride. I can even rationalize the reality of living with an incurable disease. I might argue that my body is assailed by age as much as malignancy. I’m 65 and though my eyesight is decent, the dry irritated chronic condition that I blame on the steroids, also comes with the territory of my seventh decade. The same might be said of my wavering energy.

Younger patients, of course, find it more difficult to account for their bodies’ reactions to multiple myeloma. The little debilities accrue to an extent that justifies a more aggressive treatment protocol. Tandem transplants, for example, may be better tolerated among those under the age of 50. Furthermore, such a therapy could extend remissions until better, perhaps even curative, treatments are developed.

Wet, smokey lavender Iris

At my age, I prefer counter-punching to an all out assault. The maintenance therapy of low dose rev/dex affords me a high quality of life. Yes, I take lots of naps and squint when the wind blows. But, overall, I enjoy my favorite things.

Last night, a drenching rain teased me with summer’s arrival. At dawn, steam rose from the smoldering earth. An ascendant sun crept above the horizon, maximizing its hold on the night’s territory. Outside my front door, a mother grouse scuttled across the grass. Her tail feathers stood upright in full defensive array. Before her, five chicks hustled, obedient to the sound of her clucking.

Mama and her chicks

Spring arrived and departed; summer begins just as the days start their long slow decline. Wildlife has passed the birth cycle and now nurtures its young. My home, still unsold, offers me a serene environment in which to indulge in reading, writing and gardening. In closing, here are three books I recommend: State of Wonder, by Ann Patchett; Canada, by Richard Ford; and The Cat’s Table by Michael Onaadjte.

Enjoy.

Spring Fever

The “Super Moon” of May 5th

My wife and I are prepping our house for sale. We live about 15 miles south of town in the upper Hood River Valley. Our home is tucked into a remote corner of the county. Private timber company land and a Forest Service seed orchard adjoin us to the west and south.  Deer, elk, and coyotes frequent the property.  A bobcat, Great Horned Owls, weasels, foxes, rabbits, raccoons, skunks, and bear are not as conspicuous but also make appearances. To the east and north, neighbors are few and far between in what is primarily pear and apple country.

This morning, under a leaden sky, I made my rounds of the flowerbeds. Rain showers bathed the grounds through the night. Rhododendron, iris, and Oriental poppy buds burst as the blossoms within yearn to show themselves. With the next sunny day, colors worthy of Cezanne’s palette should paint the garden.

A choir of iris getting ready to sing the praises of spring.

We want to move into town where we can walk to stores, restaurants, and the homes of our friends. My health factors somewhat into this decision. Though my cancer, multiple myeloma, is stable; I must acknowledge my energy fluctuates due to imbalances in my blood. Even in retirement, I have trouble keeping up with the many tasks of a property owner. Preferably, we hope to downsize and spend our free time socializing rather than maintaining order against nature’s surprises.

My wife has wanted to move ever since our sons left home in pursuit of their own destinies. I have been less enthusiastic. It took January’s brutal ice storm to wipe out the final vestiges of my reluctance. The subsequent cleanup exhausted me. I’ll miss the peace and quiet but living in a neighborhood seems more attractive after the intimidating winter.

Peering into the Cosmos.

We moved here 35 years ago. At that time, the “back to the land movement” was a characteristic reaction of my generation to the established order of a 9 to 5 workday. The extent of our naiveté was matched only by our good heartedness. In the long run, our idealism led to successful outcomes. We raised two wonderful sons in a safe, nurturing environment.

As a cancer survivor, hope seems to blossom along with the season. My optimism, however, caused me to overextend myself. Spring fever put me on a merry-go-round of medical appointments soon after I retired. While clearing the damage caused by the ice storm, I strained my back. Since that initial week of retirement excess, I’ve visited my chiropractor four times and an acupuncturist twice. Those visits coupled with cancer related appointments, means that in my first 26 days of retirement I saw a doctor 12 times. Make that 13; my cat, Spanky, needed his booster shots.

The tools of the season

The most important thing I learned from all this medical attention is that my cancer continues to be anchored near the shores of remission. The numbers, month to month, have bobbed up and down since my stem cell transplant in 2008. But my current drug regimen holds fast.

So, I chip away at the many chores, adding bows and ribbons to the organic beauty while reminding myself that you only have one opportunity to make a first impression. I scatter wildflower seed. I plant perennials. I prune trees.

Today, I hauled bark dust to brighten the garden paths. As I plodded about, a choir of wild birds sang the praises of spring. Buzzing insects droned in the lilac bush. My cat trod along with me until the urgings of other curiosities beckoned him to explore the woods. Here, amid all the wonders of the natural world, I am at peace. But age and illness have made me a fair weather naturalist. It’s time to respect my limitations.