Now What?

I had one of those dreams this morning—the kind you have after you wake and think your day is starting, but then you fall back to sleep.

I encountered a young deer, a buck, on a trail. I tried to let him pass, stood very still, but he reared back and placed his front legs against me. I tried to make myself seem even more still. He placed his cool, black nose against mine. I realized he wasn’t threatening me or threatened by me.

I woke with a vivid memory of the deer.

So I did what I do when I have interesting encounters with animals, I looked up its meaning in the Animal-Wise Tarot book. Mythologies are ripe, it says, with tales of heroes being lured into new, transforming adventures by chasing the deer. Lured from civilization back into the wilderness by the hunt.

The new “normal” is setting in for Tom and me. Tessa Dog continues to be an absence that is a presence. But her absence is part of the new normal as we prepare for his next course of treatment—radiation.

Radiation disrupts both cancer cells and healthy cells. Cancer cells, the invaders, are not as good at repairing themselves as are healthy cells, the legitimate residents in our bodies. Antioxidants are good for us because they help repair our cells—but apparently help cancer cells as well. And so antioxidants aren’t recommended during the 9 weeks of radiation therapy.

Whatever that means. Antioxidants are part of the food we eat as well as supplements like vitamins C, D, and E. Are all antioxidants created equal?

Though I appreciate the radiation oncologist’s knowledge about the physics of radiation, he wasn’t really very helpful when it came to information about antioxidants. He also didn’t seem interested in learning anything about them. I was left with the feeling that we are at the mercy of cancer and radiation—neither of which is known for merciful behavior.

This is a limitation to the science of medicine. I highly respect the science, but the art needs to come in as well. That means engaging the patient. I’m sure we will find a way to work through this, as Tom is working with a naturopath as well.

So maybe that is the wilderness we are being lured into—a forced engagement with ourselves—each in our own way. A deep plunge into life, what it means to us, and our agency over our own lives.

The wilderness for me, the fears it evokes, are of having my head chopped off if I rise above. Or being the nail that gets banged down because it sticks up. Or being a flower that is taller than the others.

Being that which makes me one of a kind.

In my heart of hearts, I believe that we are all one of a kind, creating the story that comes out of our experience of life. The joys and the sorrows. The triumphs and the failures. The loves and the losses.

Compassion for being human is at the core of it. Especially compassion for ourselves.

We are reaching the two-year anniversary of moving to the Northwest. I often think I’m still in California because we are still on the left coast. But it has been a significant change. One sees evidence up here, for example, of the original inhabitants. Tribal centers. Towns with native names. Totem poles carved for civic centers.

There is a feral quality that transcends here.

I’m not even sure where I’m going with this except to come back to my title: Now what?

Tom has said that he thinks cancer is outnumbered. I think that’s true. But as much a part of this that I am, when it comes down to it, this is Tom’s battle to wage. I am on the sidelines.

I feel like that candle in the wind Elton John wrote of.

I’ve been searching for my armor, my protection from the fears evoked in my wilderness. I think the deer in my dream was telling me that armor isn’t the answer. Protection isn’t the answer.

Valuing my experience of life is.

It occurred to me recently that no one has the right to survive. We are all at the mercy of life’s randomness. We can be in the wrong place at the wrong time, or the right place. Over that we have little, if any control.

But we do have a right to our life, to embrace its story, to dive into the experience of it.

So, I guess the answer to my title, “Now What?”, is to follow the deer into the wilderness and see where he leads me.

And Then It Was Time for Her to Go

Tessa Dog. November 8, 1996 to May 8, 2015

Tessa Dog. November 8, 1996 to May 8, 2015

Tessa Dog lived a very long time—eighteen years and eight months. All but two of those months with Tom and me.

Tom wasn’t so sure about having a dog. He claims that I waited until he was at a trade show to visit the shelter in Marin, then sprung it on him that I had found Tessa and adopted her.

“Well, okay,” he sorta grumbled, when I brought her home. “But she can’t come into my office.”

I left to attend a meeting. When I returned, Tessa was sleeping on a pillow next to Tom’s desk. She had gone to the doorway to his office and stared at him with her puppy eyes. So he invited her in and got a pillow so she wouldn’t have to lie on a hardwood floor.

Eight-week old puppies don’t do that—wait at the door. But somehow, Tessa understood Tom and so asked to be invited into his heart.

The night Tom’s mother died, we brought Gene, his father, back to our house after the long day of making arrangements. He dropped his 88-year old body onto the couch. Rug, our aptly named cat, jumped onto his lap, and Tessa curled herself up next to him. It was their furry bodies that kept Gene from floating away that night.

Tom’s father and my mother became the flock Tessa attended to when we moved to Livermore, following them if they left the room, gently grabbing their wrists to bring them back to us. She sang as Tom played the piano the night my mother died, but with a soft mournfulness rather than her usual exuberance.

I don’t know how dogs know these things, but they do. And Tessa was a mix of herding breeds, so she was especially tuned to communicating with the humans in her pack.

In her heyday, she kept up with the whippets at the dog park. She leapt like a deer through what Tom’s daughters named Oberon’s Meadow. She would gleefully chase the ball then negotiate with Tom as to whether she should return it to him or he should come get it from her.

It wasn’t until she was fifteen that things changed. I had woken in the middle of the night on Valentine’s Day and as I made my way to the kitchen for a drink of water, I saw Tessa huddling under the dining room table, unable to move her back legs, her eyes wide with terror, her front legs spread apart to hold her up.

Our vet told us she had something called Old Dog Syndrome—or to be more precise Old Dog Vestibular Syndrome—similar to Meniere’s disease or vertigo in humans. Basically, gravity ceases to exist. The world loses its stability so there is no context for determining which end is up—or sideways for that matter.

The vet reassured us that Tessa would likely recover completely with some tender loving care on our part—we fed and hydrated her by hand, and carried her to the yard so she could urinate and defecate. She would wait until we were by her side before she attempted to walk, would look back at us if we fell too far behind, letting us know that our presence helped her find her grounding.

One of the most endearing traits of dogs is their loyalty. In a way, the tables were turned as we nursed her back to health. She had to rely on our loyalty to her—our willingness to stay by her side as she regained her equilibrium.

It was a little over a year after her bout with Old Dog Syndrome that we sold our home in California and moved to Washington. We worried how it would affect her, the constant presence of strangers streaming through her home as we prepared for the sale. And then there was the long drive from the Bay Area to Sequim. She was over 16 by then.

But survive and thrive she did. There were the occasional spurts of running through the yard, but mostly what we noticed was the comfort of having her with us—the three of us settling into our daily routine. She would walk with me to the mailbox in the morning to get the newspaper and in the afternoon to fetch the mail. Each of us would give her a treat as we made our morning cappuccino, then one or the other of us would make what we came to call her breakfast—her medication dissolved into chicken broth with some thinly sliced roast beef we got at Costco added to perk her interest.

Why wouldn’t she want to stick around?

But she was slowing down. The last few months, she spent much of her day sleeping on her bed in our bedroom. She began to linger halfway down the long driveway when I walked to the mailbox. At night, when Tom played piano, instead of singing, she paced though the house, as if searching for the song that lingered in her memory.

And still, she was there, the herding dog who cared for her flock. During the weeks between our learning of Tom’s high PSA, the tests, and waiting for results, Tessa hovered near Tom.

The end came quickly and gently for Tessa. On Wednesday, May 6th, I took her in the morning to the groomers. At noon, Tom drained the olive oil from the sardines he would have for lunch onto a few bites of her dry food—Good news for Tessa Dog we called it. And it was—she ate it joyfully.

And then she stopped eating. Refused her afternoon treat. Wouldn’t eat her dinner. During the night, she vomited. The next morning, she went into Tom’s office and brushed against him, lingered, then came to my office, brushed against me, lingered, then began looking for a corner, a sheltered place.

We got her outside into the yard where she roamed. The vet came by and confirmed what I thought was happening. Tessa was dying.

“They don’t like dying in the house,” said the vet, who had stopped by on her way to tend to another animal. We were committed to Tessa dying at home and the vet couldn’t come by until the next day. Since Tessa was not in any distress, we decided we could wait.

As soon as the vet left, Tessa made a beeline to the house where she lay down in our bedroom.

By the next morning, she had made her way to the door to the sunroom, but could not make it any further. So we carried her to the yard and placed her on the ground surrounded by four tall trees. Tom and I sat vigil.

It was one of those quiet just slightly warm spring days. The world seemed to stop but life continued around us. Birds chattered. We could hear the occasional lowing of the cows across the road. Tessa breathed easily.

Tessa was pretty much gone by the time the vet arrived at noon. I lay down next to her, placed my hand on her chest, and felt the final soft beats of her heart.

Yesterday, two and a half weeks later, we got the results from Tom’s PSA test—his first since he was diagnosed with prostate cancer and began receiving hormone suppression treatments. It was down 90% —to a level considered normal for a man his age. He will be starting radiation treatments in a few weeks—the radiation holds the promise of being curative.

Yesterday morning, before we left to meet with the radiation oncologist, a deer came into our front yard. Deer sightings are common, but this was the first time I had seen one in our front yard. I thought of Tessa leaping like a deer through Oberon’s Meadow.

We feel we have cancer on the run. With all of the support Tom has received from friends and a team of professionals that includes my dear friend, Nancy Wheeler—a hypnotherapist—we think the cancer is outnumbered. I no longer have that cold gut-wrenching fear of losing Tom.

I knew when I wrote the blog about Old Dog Syndrome, that I would one day have to write about Tessa leaving. I knew I would title it, “And Then it Was Time for Her to Go.” Knew I would have to let her go for she would know it was time.

Tessa stayed with us as long as she could. And, we believe that she stayed long enough to make sure that Tom would be okay—and that I would be okay. Dogs, they have discovered, can smell the presence of tumors, so it is not far fetched to believe that she sensed that her flock was out of danger.

Her absence is still a presence for us. We still expect to see her lying on her bed when we enter the bedroom. Making her breakfast is a missing piece in our mornings. We miss her walking down the driveway to help us fetch the paper and mail.

I attended a workshop last week offered by the cancer center affiliated with our provider. Two people with cancer talked about their loss of independence, what it feels like to have to depend on others for things they did for themselves.

I thought back to that day when Tessa, in the midst of Old Dog Syndrome, looked back at us to make sure we were close by—a look that said she knew she could not tend to the flock as she once had. We assured her that we wanted her around regardless. We loved her. She could depend on that.

Her last few years brought great comfort to Tom and me. Three sentient beings, spending our days confident in the knowledge that we cared and could depend on each other, and on our loyalty to love and what love asks of us.

In the end, it was quiet.

My hand over her heart, feeling it stop
—like the sound of falling snow.

tessagone

The Light at the End of the Hall

earth from the moonAs it happens, the world did not stop while Tom and I went from being in the jaws of the shark, to being spat out, to swimming to shore.

So much going on in the world:

The struggle between those who seek to start another war to enforce their belief in American exceptionalism, and those who seek to use America’s strength to lead a global community.

The struggle between those who want to declare religious dogma is a person and thus should be granted civil rights equal to an actual person, and those harmed by—and those who think no one should be harmed by—another’s religious beliefs.

Again, an unarmed black man has been shot dead by a policeman who claimed he feared for his life as the fleeing man ran away from him. Shot in the back multiple times.

Oh, and Mad Men returned.

Mad Men is always a great reminder of where we have come from, telling the story of the cultural changes that catapulted America out of World War II and the Fifties, and into the a world that stretched boundaries. The first episode begins in 1970, when the counter-culture got assimilated into the status-quo culture. Businessmen wearing shaggy hair, sideburns, and mustaches. Women venturing into the business world, where, of course, their power and standing were trivialized and diminished by frat-boy-men who humiliated with them with snide, stupid innuendo and sarcasm.

I thought we were past all that.

And, then, Indiana passed a law that allowed businesses to discriminate based on their religious beliefs. Fortunately, it created a backlash, led by the market place. Indiana relented and included a statement that it was illegal for a business to deny services to an individual based on his or her sexual preference.

Well, hallelujah, I say.

There was the debate that tried to defend religious beliefs. God tells some people that those who are wired to love someone of the same sex are an abomination to him. And, they have a right to hold that belief.

Well, yes, they have a right to believe that. But my god tells me something very different. First she’s a she and doesn’t cares who you love and commit to. The point is to be kind and loving.

There is great harm done when the culture, the society, and the government supports a group’s right to shape the world in its own image. Look no further than gay teen suicide as an example.

Imagine how bleak it must seem to believe you are unworthy of love in the eyes of god—not because of having done harm to anyone, but because of what you inherently are. Imagine believing that you can never have a home and family and life partner unless you are willing to live a lie. Imagine what it must feel like to the spouse who lives with that lie.

It’s tough enough when one’s family enforces such a limited world. When a government reinforces it, there is no escape.

Believe what you want, but you do not have the right to mold the world to reinforce it, especially if it inflicts harm on others.

If we are to live in a country that does not establish a religion, then we all need to live with the ambiguity that comes when we make room for all religious beliefs or none at all.

In The Power of Myth series, Bill Moyers asks Joseph Campbell if humans create myths based on their environment. He said yes. He gave the example of what it was like when a Pygmy, who lived in a rainforest, was taken to a mountaintop. The vastness of the landscape overwhelmed him. He wanted to retreat into the rainforest where he felt safe.

Those of us who live in the “modern” world are much like that Pygmy. Only we are exposed daily to the vastness of the world—a world that includes rainforests, deserts, mountains, valleys, oceans, glaciers—and we don’t have that rainforest to retreat to.

What we have is our planet. Our home. And we need to feel safe here, the way the Pygmy felt safe in the familiarity of the rainforest.

As Joseph Campbell said, we need to write new myths. Science and the information about the world it gives us provide us great tools for doing just that—for finding the divine in the mundane.

But, to do that, we cannot pander to or give credence to solipsistic dogma, anymore than a family can be functional if it sacrifices the needs of its members to the needs of its least functional member.

Mad Men is great storytelling. The characters are catapulted into a world that is vaster than the one they were raised in. It makes visible the devastating effects of racism, sexism, and homophobia through the eyes of the characters who experience them.

We’re not past all that. But, I believe we are on our way.

The governor of Arkansas saw the reaction to Indiana’s attempt to codify homophobia, and refused to sign a similar bill.

The policeman who shot the black guy is being charged with murder.

We have a president who understands the nuances and subtleties of strength. I like to think that it’s because his mother lived in, experienced, and exposed him to cultures beyond her Midwest beginnings. It seems to me that rather than freaking out about the ambiguous nature of reality, he embraces it.

I believe we are spirits learning to be human. Compassion rises out of our experience of being human. The origin of the word compassion comes from “to bear” and “suffering.” To bear suffering.

I think that means a willingness to see and experience another’s pain, rather than avert our eyes from it, convincing ourselves that it has nothing to do with us—it’s not something that could ever happen to us.

In “Conversations With My Son,” Sue Miller says that there was a light at the end of the hall where she grew up. Safe passage. So there was a light at the end of the hall in the home where she raised her son as a single mother.

If we want safe passage in our home, our planet, we need to have that light at the end of the hall. I think that will come from writing the new myths Joseph Campbell referred to.

We’ve come along way and we have a long way to go. Let’s do it.

The Geese

It’s like that. One day you realize something has changed. For all I know the geese may have been back for several weeks. But last week, I noticed them in all their honking glory.

2015 spring 3My part of the Earth has turned from winter to spring. It was cold yesterday, but it was spring cold. One of those days that surprises you with its chill. You know winter has passed because the signs are all there: the blossoming trees, the tulips and daffodils finding their bloom, the lengthening days, the woodpecker on the telephone pole.

The chill is as cold as a winter’s day, but it is spring cold. A reminder that change isn’t fixed. It has its own rhythm. Change happens over time.

I’ve been trying to come up with a description of my blog, Writing Shed. What it’s about. The closest I could come to was that I’m a woman growing older writing about what a woman growing older writes about. Which means I write about life’s stuff.

The dust seems to be settling for Tom and me. A new reality in which cancer is a player, but not what defines our life. It catapulted us into a more intense experience of life, but now we are settling in again to the mundane: paying bills, daily household chores, grappling with what to do next.

The mundane is also life. We enhance it by making sure to honor the grace of everyday living: the time we spend talking with each other over breakfast; the attention paid to making dinner a meal worthy of leisure enjoyment—and then enjoying it at a leisurely pace.

And then, of course, we have to do the dishes.

I just rewrote a piece that describes how I went from thinking being a married woman was a what that trumped me, to understanding that anything I do is nothing if it doesn’t include me. I get to write my own story.

The piece is based on the period following my divorce in 1974, which was chaotic. I couldn’t figure it out. I wasn’t a married woman, so what was I? I had ended the marriage. Felt that I had escaped it. But I had no real idea of why.

I traveled to Europe alone in 1976 (radical for my background). That was when I decided I was a writer. And when, without my realizing it, I began to shape being a married woman around who I am.

But, as I said, change isn’t fixed. It takes place over time. The dust has to settle.

There is something about the recent before-and-after-the-shark event we just went through that has helped settle the dust wrought by that nearly 40-years-ago seed of change.

I am a writer and a married woman. The shark made me realize that being a married woman has a unique vulnerability. It’s not so much a what I am as a who I am by virtue of loving.

Change is time. Time is change.

I’m a woman growing older writing about growing older. Which is life’s stuff.

I look forward to the geese family stopping traffic on Third Avenue—the adult geese raising their necks in defiance as they usher their fuzzy goslings from one side of the road to the other.

Growing older. Aren’t we all?

The Shark

dinnerI inherited from my grandmother a dishtowel. I think she called them tea towels. It is illustrated with sparkling, smiling, strutting tea kettles, cups, saucers, creamers, and sugar bowls. It looks like a thirties or forties animated Disney version of what happens in your kitchen while the household sleeps.

“Kitchen Parade” is printed around the four edges of the red border that frames the parade.

I don’t use this tea towel. And I didn’t inherit it in the sense that it was written in her Will, “Give my granddaughter Karen the Kitchen on Parade tea towel.” It was more that I was there when my mom and I cleaned out her apartment and I knew I wanted to keep it. Like the Doll that Hid The Toilet paper—it was an iconic remnant of her life as the Domestic Dame she was.

What I kept of my mother’s domestic icon was the trivet that says, “My house is clean enough to be healthy and dirty enough to be happy.”

Then there was my mother’s sister, my Aunt Lucille, who, after sending my brother’s out to play after Thanksgiving dinner, told my cousin and I (we were 11) that we had to do the dishes (no dishwasher—greasy pots, pans, and dishes from a dinner for eight) because it was time to start getting used to the domestic drudgery that was our inheritance—our lot in life.

These three women formed a legacy of domesticity that was problematic for me—particularly that message from my aunt. It took me years to develop my own relationship with being a homemaker—to discover and embrace my voice, as it were, when it came to creating a home.

About three weeks ago, I bought a Shark vacuum cleaner—the Rocket. It’s awesome power in sucking up dust and the other detritus that accumulates from daily living is matched by its design. Without turning it off, I can detach the handle from the base and use it to suck up the stuff that lands in nooks and crannies, then reattach it to continue the sucking of the wider swaths of dust and detritus.

My grandmother had a state-of-the art thirties Hoover vacuum, that while powerful, was heavy and clunky and had a belt and bag that had to be replaced occasionally. You had to push the thing, sometimes with great effort, across a carpet.

Meanwhile, the Shark Rocket almost glides by itself. There is no bag to replace, and as far as I can tell, no belt. It is lightweight and compact. A well-designed tool for the task at hand.

The Shark helped me get through the weeks of terrifying uncertainty that started with a note about Tom’s high PSA count and ended with the course of treatment that has given us a sense of safety.

Cooking also got me through. I combined buttermilk and cream to make crème fraiche, made cinnamon ice cream laced with chopped pistachios, olive-oil poached tuna with olive and caper vinegarette, coq au vin, savory chicken, and leek and spinach soup topped with my homemade crème fraiche. Just to name a few.

I looked up a definition of cancer (because that’s what I do when a word overtakes me). The one that resonated was: an evil thing or condition that spreads destructively.

Home became the force against that evil thing. I wanted to make it a place that was nourishing, delicious, and free of detritus. A place that could banish the evil.

Homemaker. I embraced it.

Years ago, around the time that Jaws was in theaters scaring the peewadun (that’s my grandmother’s expression) out of audiences, I read about a skin diver in Tamales Bay who was paddling along on the surface when a great white shark came from below, grabbed him in its jaws, pulled him out of the water, shook him like a dog shakes a toy, then spat him out and swam away. The skin diver swam to shore. I believe he had only minor injuries if any at all.

I remember thinking at the time that that must have been a life-changing event for that skin diver—that there was the time before the shark, and the time after the shark.

From the moment that Tom got his PSA results until we heard the treatment plan, we were in the jaws of the shark. It spat us out when we got a plan for his treatment. This past week was the beginning of our after-the-shark life. A new normal now that we have been spat out.

I don’t think of the shark as death. I think of the shark as life, a reminder of our mortality, our vulnerability—a vulnerability that connects us to each other, as well as the living system of which we are a part.

Mortality is not only about recognizing our own lives have an end parenthesis, but about loving and the risk we take by loving—losing who we love. Grief is also the shark. It grabs us in its jaws without warning and holds unto us until it spits us out. Humans are famous for loving again after being in the jaws of grief. It is, perhaps, our greatest virtue.

Great white sharks became the villain that summer of Jaws. Everyone was interested in them. Sometime that summer, a great white shark (a baby one), was caught and sent to Steinhart Aquarium in San Francisco’s Golden Gate Park. It did not survive. Its body was put on display.

I visited the aquarium (this was when there was no entry fee). As people gathered around the body of this baby shark, I found myself feeling bad for it—that its dignity was being violated by the gawking curiosity. There was nothing villainous about it. It was just what it was. A being on the home we call Earth that was no longer a living being.

Someone somewhere wrote that humans aren’t learning to be spiritual, but rather spirits learning to be human. That’s what I believe. And that we become the most human when we are touched by our mortality—and that it is in our mortality that we find our immortality. Our lives are at the same time important because they are unique and a part of something larger than our individual lives. The grain of sand that makes the difference in the composition of the beach.

We find compassion through our mortality.

I want my country to embrace that compassion. To hold together the uniqueness of individuals while recognizing that we are a part of humanity, which is a grain of sand in the ecosystem that is the planet we inhabit.

Earth. Our home. We are its homemakers.

Note: I said in my last post that my cousin stayed home. It really was that she worked from home to change the world.

This Time ‘Round the Sun

baucis and philemon“Once more ‘round the sun. Who knows what lies ahead?”

That’s how I ended my first blog entry of this year. Days after that, my cousin’s husband died. He had been diagnosed with ALS 17 months earlier. My cousin’s life and mine could not have been more different. She was a feminist who stayed at home to raise three children.

While I had a somewhat roller-coaster alternating with bumper-ride-of-it life, hers was fairly tranquil in its domesticity. Her husband and I could not have been more different as well. He was baffled by the emotional carnival-like rides of my life—I thought his was like riding the merry-go-round.

I wondered when he was diagnosed how he would deal with it. Well, all my perceptions of him were tossed to the winds. He looked at death directly and faced it with great courage, grace, and generosity. It was clear to me that what he saw in my cousin was a feminist who could stay at home. Together they were a good team that raised three children who have become lovely adults. They created a healthy family that has grown to include partners and two grandchildren.

It’s heartbreaking that his life with this family was cut short.

I had thought about writing something about this earlier, about his last journey ‘round the sun, but got wrapped up in the VDay production of A Memory A Monologue, A Rant, and A Prayer. Then, when I returned from dress rehearsal, the night before opening, Tom got the results of his PSA test. Normal is considered 2 to 4 ng/mL. His was 53.

I got little sleep that night. Fear had started to creep in. Blood tests, exams, and a biopsy. Then the diagnosis. He has prostate cancer. The PSA was so high, they were concerned that it had already metastasized. More fear as he got sent for bone scan and CAT scan, then the excruciating wait for results.

The scans were clear. The urologist suggested that the course of treatment would likely be radical prostatectomy, radiation, and hormone therapy. He referred us to a surgeon in Seattle because the local hospital (Port Angeles) did not have the equipment for a robotic (laproscopic) procedure.

Our appointment was at 9:30 on Monday. We woke at 5:00 to drive to Bainbridge Island where we caught the ferry. The surgeon was excellent. Clearly knew his stuff and very straightforward. He did not recommend surgery. Because of the high PSA, he said, it was almost certain that the cancer had spread microscopically to the surrounding tissue. The operation is really invasive, quite traumatic, and would likely leave cancer behind.

But, this was treatable. They have found, he said, that radiation therapy combined with hormone therapy has the same results as surgery combined with radiation and hormone therapy.

Crossing water, riding the ferry was a soothing way to take it all in. While surgery had held out the promise of cure, we were also both relieved that he didn’t have to go through its daunting consequences.

On Tuesday we visited the radiation oncologist, a delightfully sweet man who explained what would happen from here: twelve weeks of hormone therapy followed by 9 weeks (5 days a week) radiation therapy and continuing hormone therapy. I asked him what drew him to the specialty. He said he was fascinated by the physics of radiation.

That means to me that the combination of his skill in connecting with the patient and his understanding and curiosity with the physics of radiation puts Tom in very competent hands.

We’ll be done by Thanksgiving he said.

Before we left the center, we spoke with a Social Worker who is referred to as the Patient Navigator. What better title could there be. She got us set up with a support group, offered us transportation if we ever needed it, and convinced Tom to go ahead and get some sleep aids. It would take time for the level of fear and stress to be relieved, and sleep was important to bringing it down.

I am so impressed with our provider, Olympic Medical Center. I have dealt with the medical world off and on for a very long time, working as an administrator, being a hospice volunteer, being the navigator for my parents and in-laws as they wended their way through various medical systems.

It is a huge relief to have someone to rely on—someone who knows the ins and outs of the system we are a part of—a system that includes a navigator.

After five weeks of uncertainty, Tom and I are settling into hope. We now believe that he will be one of those men who die with prostate cancer, rather than from it.

I cannot leave this story without telling the backstory. The urologist and surgeon both think that this cancer has been going on for three to four years, which coincides with when we lost our health insurance. Because of the downturn in the economy, we could no longer afford the $2000 monthly premium (we had already increased the deductible twice) we could get through our business. The premium costs were high because insurance policies through a business could not exclude someone due to pre-existing condition. We were denied cheaper health insurance (basically catastrophic insurance) as individuals because of existing conditions that included visiting a doctor once in the previous year for a minor illness or injury. The insurance offered little, actually. We would have been on the road to bankruptcy by the time it kicked in.

We rolled the dice because we had both been healthy. We didn’t have yearly tests. The Affordable Care Act kicked in a month before Tom was eligible for Medicare. It took us another eight months to find a doctor. We live in a rural area, so we had to wait while Olympic Medical Center geared up.

Had we discovered Tom’s cancer during the time we didn’t have health insurance, God only knows what we would have done. It is not only the cost that makes access to health care daunting, it is also finding places that will take you if you don’t have insurance. You are left alone to wend your way, looking at the daunting cost of each diagnostic procedure and treatment.

I find myself increasingly enraged when I hear talk about market-based medicine, replacing Medicare with vouchers, giving tax credits for medical savings plans. These are suggestions made by delusional people who have clearly never had to pay for their own health care, or who are so wealthy they don’t have to worry about paying for it.

Medical care is a system. A complicated one. I don’t need PSA tests, but they need to be part of our medical system. I am willing to pay the price for them because the human cost is worth it. It is the cost of living in a society that is humane.

We have figured out that a silo-based approach to technical infrastructure is expensive and inefficient. I worked on a project to implement an enterprise architecture at the California Administrative Offices of the Courts. It would allow one county’s court system to talk to all of California’s court system. Richard Alan Davis, the man who kidnapped and killed Polly Klass in 1996, was stopped by police with her in the car. But, because different counties’ information systems didn’t communicate with each other, he wasn’t flagged as a danger. If the systems had communicated, perhaps Polly Klass would be alive today.

It’s the same with our medical system. There is no freedom in not having access to health care. When I was the administrator for the geriatrics program at SFGH back in 1980, the goal was to train health care providers in a team approach to delivering health care. The team consisted of medical students, dental students, nursing students, pharmacy students, and social workers. Together they provided a complete view of the patient, rather than a symptom that could be cured or not.

It’s called health care. And that requires a system. The marketplace cannot provide that because its goal is to make a profit based on three months’ projections. Health care profitability has to be measured in a much different time line.

There are daunting times still ahead for Tom. I think for me, the most daunting thing is my sense of powerlessness. I am here to support him and love him, but I am powerless to fix it.

Once, I was awakened in the night with a visceral fear of losing him. I felt it throughout my body. Whatever numbness prevents us from imagining such a thing had abandoned me. What I couldn’t imagine was how I would survive such a loss.

I am back to believing that Tom and I will grow old together. Unless we can be Baucis and Philemon, one of us will be the one left behind. But that once again seems far in the future.

Our medical technology is very sophisticated in the way it can save and prolong life. But only if we have access to it. To those who have the power to dismantle what has been started with the ACA (as flawed as it is), you need to know that everyone must have access to a systematic approach to health care. No poor or middle class family can ever save enough in a medical savings account to pay the cost of a devastating illness. Catastrophic insurance is just that. Takes care of a catastrophe that might have been prevented had there been a health care system that was accessible regardless of income.

Health care is a right. Health care is freedom. I would ask those who have the power to dismantle or create a human health system to imagine the visceral reality of losing a loved one. Then imagine that that death did not have to happen had the loved one had access to a health care system that is measured in human costs, rather than one that is market driven.

Note: the Baucis and Philemon graphic is by by gherkin-chan

Magic Shoes

We are the granddaughters of the witches you did not burn. ~ Unknown

shoes1I wore high-top tennis shoes for A Memory, A Monologue, A Rant, and A Prayer. I think they are still referred to as tennis shoes. I’ve wanted a pair for a very long time, would pick them up from the shelf in the shoe department, turn them this way and that, then return them to the shelf without even trying them on.

I don’t know why.

And then I was in the staged reading of A Memory, A Monologue, A Rant, and A Prayer. My piece: “Conversations With my Son.”

“You’re coming in from the garden,” the director suggested. “Do you have a pair of high tops?”

Finally, I had an excuse to buy high tops. I found them online for a mere $6.00.

You should know that though I have always wanted to garden, I am absolutely clueless when it comes to growing things. While my dogs and cats flourish with me, I have the distinct feeling that plants of all varieties know I appreciate them, but want me to appreciate them from afar. I don’t have the ear for their language.

I added a hat and flannel shirt to my costume. And then I put on the shoes. Magic shoes.

They were comfortable. They connected me to the ground I walked upon, whether the stage, the green room, or the muddied grass that surrounded the theatre. I believed I was a writer/mother/gardener/feminist who wrote, tore out articles that recorded the horrors of women used as spoils of war and everyday victims of “domestic” violence, sent them to my son, called him in the middle of the night and as he went into meetings to pitch ideas for writing to talk about the state of women in the world—and also worried and wondered: did I damage my son as a man and as a person with these horrors perpetrated by men.

She didn’t, this writer, Susan Miller. Her son seems fine. A good man. There was a light at the end of the hall in her home growing up, It signified safe passage. So she had a light at the end of the hall in the home in which she raised her growing son as a single mother.

I think it’s that light at the end of the hall—safe passage—that allows a child to grow, to flourish, to feel entitled to his or her story.

Many of our ancestors were burned as witches. Some for political reasons—it was a way to wrest property from them—others because they were connected to their female selves. For generations mothers tried to protect their daughters from suffering the same fate by teaching us to cover it up, go along, act as if we were powerless.

I think that legacy is changing. There were witches that did not get burned at the stake and their descendants, those like me, are finding our footing, our voices, our beating hearts—courage.

The word “courage” is from the Middle English. It denotes heart as the seat of feelings. In the Animal-Wise Tarot deck, the Cougar card means Coming into Your Own Power. Fill your heart with power knowing the time and circumstances are right to take charge of your life most effectively.

shoes2Something about those shoes. I wear them whenever I can now. So much better than those high heels that cripple our bodies. Sometimes we need to don a costume to realize that it isn’t a costume at all, but who we actually are.

I am the granddaughter of a witch they did not burn. I am not alone. With our beating hearts filled with power, our voices are speaking the truth of the human heart. Authentically. With compassion. And with the light turned on at the end of the hall.

Safe passage.