Summer Daze

Sunflower

Cancer requires one to slow down and simplify their life. Predictability in ongoing routines helps me to manage an otherwise unpredictable disease. Finding peace in a time of uncertainty is the goal. 

Once a month, I receive a dose of immunoglobulins. It’s a support treatment. It doesn’t kill cancer cells. Instead, it boosts my immune system, which is depleted of defenders by my blood cancer, multiple myeloma. The immunoglobulins help to protect me against bacterial and viral infections. Things like the common cold; things like Covid-19.

Due to my “sucky” immune system, I also practice preventive measures to minimize unduly exposing myself to random bugs. I was social distancing before it became a meme. I learned from nurses at the time of my stem cell transplant in 2008 that an emphasis on personal hygiene would prolong my life. It’s simple, common sense behavior. For 12 years, I’ve avoided salad bars, chosen not to fly, and washed my hands … a lot.

Bachelor Buttons, Cosmos, and Japanese Poppy

My health is decent, managed by a series of treatments that have not changed in some time. The plan is busy but not arduous: I take oral drugs at home and have two monthly visits to the infusatorium. One is for a dose of the aforementioned IGG cells. I receive a cancer killer drug at the other visit. After that, I get a few weeks break before doing it all over again.

In order to combat the disease, my oncologist designed a coherent plan. It’s based on science. If necessary, we adapt when the cancer develops wrinkles that need smoothing. 

These days, much of the rest of my life is similar to everyone else’s. That’s assuming they are following the prevention methodologies of social distancing, personal hygiene, and mask wearing. With the coronavirus we all have immune systems jeopardized by an infectious disease. 

Finding peace in my wildflowers.

Unfortunately, many people refuse to adhere to practical preventive measures. Why is it that there is blatant disregard for common sense? It starts with leadership. Our president refuses to model safe behavior.

In fact, he stumbles to be relevant in multiple crises. Obviously, he missed his chance to lead. Mayors and governors act decisively. They govern. The president, however, fails to articulate a clear message. He muddies the water with “gut” assessments of biology. And, his repeated contention that fewer tests will lead to fewer cases, murders logic. 

The misinformation, in conjunction with a lack of direction, lead to an increase in the infection rate. More deaths follow. The economy flounders as millions of Americans cannot work. All this for want of a national plan to control the pandemic. 

It’s hard to find peace under this cloud of uncertainty. Things must change. Leadership must be found. Be sure to vote this November. Your life may depend on it.

Sorry, We’re Closed

Mother’s Marketplace

I live in Hood River, Oregon. The river for which it is named flows north from the foothills of the Mt. Hood National Forest. Its three forks converge ten miles south of town. My youngest son and his family shelter in place near that spot. From there it meanders through woods, pastures, and orchards before emptying into the Columbia River at the waterfront where I often walk.

My wife and I moved here more than forty years ago. Good fortune came from that choice. We raised our sons in the upper valley. Our first home sat on a plateau between the middle and west forks of the river. The roots of the grandkids sprout from the same soil that nurtured their parents. They share the same legacy of mountain forests and streams; wildlife and rural community.

Ace Hardware

The county of Hood River depends upon agriculture and tourism for its existence. The orchards and vineyards thrive in spite of the virus. Tourism, however, stopped abruptly when Oregon’s governor imposed restrictions to prevent the pandemic’s spread.

The itch to be normal again is strong. But, uncertainty circulates through our community. One day there’s confidence the coronavirus will dissipate in the ether of time. The next you are reminded that this disease persists with an ubiquity reminiscent of dandelions. It’s everywhere. 

Camp 1805

Locals, unemployed by the shutdown of small businesses, return to work with caution. Some retail outlets prefer to continue offering their products from behind closed doors. Some restaurants feel takeout only is still appropriate. Other stores allow customers to browse their wares. A few serve food with revised seating to maintain a semblance of social distancing.

Our health department reports 16 cases of COVID-19. Some have completely recovered, none required hospitalization, and no one in Hood River has died from the virus. Sheltering in place and the discouragement of visitors worked to keep the level of infection low. Now, as we open ourselves up to outsiders, the risk of disease looms.

What have we learned from the pandemic of 2020?

We know that 370,000 people world wide have died from the disease.

We know that the United States owns over 100,000 of those deaths.

Lampoei’s Thai Food Has Always Been Takeout Only. Suddenly, It’s A Great Business Model.

A disproportionate number of the deaths are borne by the elderly.

We know the delayed response from our national leadership was a mistake.

Rosy pronouncements from the White House conflicted with reality again and again.

We know its disorganized rollout of plans and promises seldom materialized into action.

We know, incredibly, the president has fostered division instead of unity.

The result is confusion and the world’s worst rates of contagion and death.

The result is a collapsed economy that still wobbles.

We know 40 million people are unemployed in the United States.

Forty. Million. People.

We Miss Hanging Out With The Grandkids.

We know simplicity, once enacted, made a difference.

Social distancing, masks, and good hygiene flattened the curve.

We know essential workers in a community are ordinary people, doing ordinary jobs.

We know, if we choose to adjust priorities, hope exists to renew our troubled planet.

*****

The wonders of our rivers and forests and wildlife carry on, unaffected by the crisis of disease. The human community, however, restricted activities to protect themselves from contagion. Now, with the relaxation of those controls, what consequences will the latest new normals deliver?

Answers elude us about things such as whether public schools can open next fall. Then, there’s the renewed permission to be going out and mingling with one another. It’s like a blind date with mortality. You hope to be lucky.

I wait. Time goes by. There will never be no risk. But continuing with safe behaviors will increase your luck. 

Deserted Streets, Empty Spaces

The Ruddy Duck on Oak Street, with some good advice.

In the early spring in this year of the pandemic we live in a house on a street that divides the city from the county. The trees in the fruit orchards nearby are past peak blossom and west winds scatter their petals onto the pavement. Strangers walk by the house, in groups of two or three or alone. Some wear masks, some don’t. The roads are quiet as families shelter in place and many are out of work and few cars drive by.

Downtown, some retail businesses operate a version of what was once a normal schedule. They restrict access to limit exposure for customers and staff. Hotels are closed to deter tourists. Restaurants provide takeout meals only, which further discourages outsiders. Deserted streets and empty spaces prevail.

In my garden, I plant petunias and nasturtiums in the sunshine. Coleus plants go where indirect light filters through the overhanging branches of trees. Birds chatter and sing and bathe in a concrete trough, oblivious to the worries of us humans.

Portway at midday.

At the hospital, which I visit twice a month to treat my cancer, everyone must wear masks. Nurses, in the infusatorium, move among us like bees attending a hive. They set IVs, adjust the flow of chemo drips, and take vitals. 

The coronavirus has yet to deplete the hospital’s resources. Gloves, masks, face shields and paper gowns seem plentiful. These protective measures minimize the dangers. True safe distancing, however, is an illusion one accepts in order to continue treatment against the more visible foe of a malignancy.

As of the 26th of April, our town has just five confirmed cases of the disease. No one has died and none of the five are hospitalized. The air is clean to breathe, the colors of spring bright, yet concern about the future mars the improving weather.

Mike’s Ice Cream, normally a hub of activity.

In the last month, global deaths from the coronavirus occurred at a rate of 50,000 every eight days. The elderly carry the load of this mortality. Paeans to beloved grandparents pepper human interest stories in the media. Many die alone, in the twilight of their lives, absent the providence of human touch and the presence of loved ones.

Illness and death aren’t the only factors in the equation that defines our current hardship. Restrictions on movements and livelihoods can lead to isolation. For many, financial ruin is a reality. Everyone feels the weight of an uncertainty that goes on and on and on. Bailout checks signed by an empathy challenged president won’t soothe the anguish. Weeks become months, and a sticky cobweb of contagion adheres to our consciousness.

We all want something settled and predictable to counter the chaos caused by Covid-19. Patience is our ally. Hanging in there is good advice.

Souvenirs

Broken hearts and dirty windows

Make life difficult to see.” From Souvenirs by John Prine

The Sherwood Children

This photo, from the early 30s, shows the Sherwood children. My mom is bracketed by her brothers and sister: L to R are John, my namesake, Lillian, my mom, sister Edith and brother Stan. They grew up in rural Wisconsin. Attractive kids all, and now passed on. 

My mom’s brood, which included my older brothers Jim and Tom, was the only one that left the dairy state. They moved west during WW II because there was work in the San Francisco shipyards for my dad. We think it was 1942. Brother Butch and me did not come along until 1944 & 46. Sister Mary arrived 13 years later. The other Sherwoods and the majority of their children stayed and made their lives in Wisconsin.

So, I have roots in the Midwest from my mother’s side of the family. Dad’s roots vanished along with the topsoil of the Dustbowl years. Orphaned as a young boy and separated from his sister, he wandered his way into my mom’s world. Too soon, he wandered away again. In addition to memories, my souvenirs from Dad include black and white photos, and a hickory shafted golf club.

Souvenirs

The descendants of my Mom’s line are plentiful. Accordingly, lots of pictures exist, though I only have a few. But there’s also a set of chrome nail clippers. They were a high school graduation gift from Uncle Stan and his wife Aunt Bernie.

Probably, as a seventeen year old, I thought something along the lines of, “Gee, nail clippers … wish they had sent money.” Yet, 56 years later, I still have them. The sturdy leather case has weathered the twist and turns of my life. I realize now their practicality, which reflects the solidity of my beloved aunt and uncle.

Tangible objects from my Mom are meager, but sufficient. At the time of her funeral, a small bronze bell lay among her collection of jewelry. It’s attached to my ukulele strap. Whenever it jingles, I think of her.

Souvenirs are tricky. Too many and you gotta drag a little red wagon of nostalgia everywhere, looking backwards, not forward.

On the other hand, none or too few can leave one ungrounded. Perhaps that’s something of what my father felt. He had little to hold onto. I rejoice in the wings which blossomed from my roots. I know where I come from.

*****

It’s Good Friday. Since writing two weeks ago, the pandemic has marched ahead, oblivious to the cares of mankind. The pace and direction of the disease wavers depending upon an area’s discipline in social distancing. Currently, the confirmed cases approach the two million mark worldwide. This includes 100,000 deaths. One of the prominent losses occurred on the 7th of April. John Prine, the country singer/songwriter, died from complications of the coronavirus. We were the same age, born about three weeks apart. He also had Midwestern roots. What amazing souvenirs he left behind … 

Today Will Not Be Here Tomorrow

Meanwhile, someplace in the world, somebody is making love and another a poem.”

From Figuring by Maria Popova

Periwinkles, ducks, and clouds. Hood River waterfront on 3/20/20.

I fed hummingbirds all winter. Each time I thought they had departed for a warmer climate, they would appear and take a big slurp from the feeder.

I received two petunia plants in September. They continue to flower. I did not tend them. Still, they survived outside, in northern Oregon, on relative humidity and indirect light.

This is unusual.

In late January, following our return from a Christmas vacation in California, the first news of the coronavirus came from China. The world scoffed aloud, “Hmph”. Now, barely two months later, it stammers a collective, “WTF”. The upheaval is astounding.

The Columbia River looking west from The Hook in Hood River, OR. 3/20/20

Worldwide, half a million people are infected with the virus. More than 25,000 have died. The travel industry needs a ventilator to breathe. Cruise ships are floating petri dishes. Professional and amateur sports suffer in an induced coma. Many states have closed schools. Shortages exist for supplies of hygiene related products. Restaurants across much of the USA shutter their doors in adherence to social distancing. Mayors and governors issue sheltering in place edicts. Bustling downtowns look deserted. The stock market plummeted to record lows, millions are suddenly unemployed, and everyone with a 401k is hyperventilating.

My ukulele-a Mike Pereira “Cali” Baritone.

To the rescue, the federal government …? Wow, where to begin? The kindest thing I can say is that our president’s leadership has been sub-optimal. Evidence of the country’s unpreparedness is matched in degree only by the administration’s improvised responses that, thus far, promise but don’t deliver. Congress, prone to partisan dithering, slogs along. Emergency relief is imminent, albeit late. More will be necessary.

Are we all going to die? No. But, it’s possible someone we know will. Better leadership and foresight could have minimized the number.

I belong to one of the high risk groups. I am older. And, I have a suppressed immune system due to my cancer, multiple myeloma. Fortunately, I am a home body by nature. Social isolation is not a personal hardship. I read, I write, and I play my ukulele.

I am 12 years out from diagnosis. Like those petunias in my front yard, I exist on the relative humidity of my good luck. My anxiety about the Covid-19 virus is tempered by experience. The grim prospect of mortality is an acquaintance. I am no more susceptible to contracting the virus than you. However, I may have a more serious response should it come my way. So be it.

Closed the waterfront to walkers on March 22nd

Our fragility as a species is revealed by a microscopic organism. Knowing better, we nonetheless chose to be unprepared. The current administration dissolved pre-existing institutions established for a menace such as Covid-19. Now, we pay the price for that choice.

Similarly, we will pay a price for our indifference to the threat of climate change. It’s cheering to see hummingbirds visit during the gloomy days of winter. Remember, though, this is unusual. It’s not equivalent to the Australian brush fires or 69 degree temperatures that recently occurred in Antarctica. But it serves to remind me, overwhelming evidence exists of this threat to humanity.

The coronavirus teaches us that calamities occur that effect all of mankind. It also shows that we can respond unilaterally for the greater good of everyone. We will survive Covid-19. Climate change will be a much more formidable challenge. Let’s hope we choose to be better prepared for its consequences than we were for this disease.

Now, a song … 

Today Will Not Be Here Tomorrow

The latest numbers …

The Drill

Stanyan Street

The Oakland Gang: niece Tillie, me, Nephew Joey, my wife Marilyn, and Noah our oldest son.

Due to my cancer, multiple myeloma, the physical adventure of traveling challenges my attitude. I dislike flying: the herding, the depressing bag of pretzels, and the cabin’s claustrophobic fit. Yet, once again, my wife and I chose to spend the holidays in San Francisco’s Bay Area.

We stayed in Oakland at a hotel on Broadway, close to where our oldest son lives. We were joined by a niece, who lives and works in a town nearby and her brother, our nephew, who was visiting following the completion of his degree at Tufts University in Boston.

Lake Chalet

I’d arranged to re-schedule my twice monthly infusions so as to not interfere with our activities. My treatment also includes oral drugs, which can continue when I’m on the road. I take a chemo type pill once a day and a steroid once a week. I’ve become inured to the daily pill. Its side effects blend into the general fatigue syndrome that characterizes my blood cancer. The steroid, though, radically alters my mood, my energy, and, perhaps, my personality.

IMM

We dined at a number of excellent restaurants: Itani, brunch at Lake Chalet, The Berkeley Social Club,  a morning snack at The Rotunda on the first morning, the hotel’s restaurant for breakfast Christmas day, then Farley’s East on the penultimate morning. Prior to seeing the movie, Little Women, we ate Thai street food at IMM and finally a goodbye meal at Tay Ho, a French/Vietnamese restaurant.

The highlight, however, was Christmas dinner at my brother and sister-in-law’s house in San Francisco. The Oakland gang merged with the San Francisco gang. 

Brother and Sister-in-Law’s house on Stanyan Street

The house sits near the top of Stanyan Street above Golden Gate Park. It is of Victorian vintage, built early in the twentieth century. (1904)

There are three levels situated on a steep slope adjacent to Sutro Forest. My brother and his wife live on the top floor. Their daughter and son-in-law and 12 year old grandson occupy the main floor. A laundry and storage, as well as a small studio apartment finish out the dwelling. There is also a two car garage, quite a luxury in parking starved San Francisco. They bought the house for $100,000 in 1973.

Oakland street art.

They admit to initially being anxious about the mortgage. At the time, my brother was a San Francisco fireman. His wife worked in medical research. She then chose to get a law degree and eventually became a patent attorney. Along the way, she also bore a child. By investing in their ingenuity, they were able to persevere through those early busy years. The house is now worth much, much more than the purchase price.

Stanyan Street

Main floor of the Rotunda in Oakland, CA

Christmas day was my steroid day. Under the influence of the drug, I sometimes jabber too much. I have also been known to say the wrong thing at the wrong time. Such are the perils of the steroid high. My faux pas filter, however, managed to keep me out of trouble. The convivial conversation even  prompted me to toast the three family lines in attendance. 

But, the enduring star was the house itself. Nurtured by my brother and his wife through the years, it has hosted numerous events commemorating family passages. There was a going away party for my wife and I decades ago when we immigrated to New Zealand. Then, in the not too distant past, a support reunion party for me prior to my stem cell transplant.

Tay Ho

Furthermore, two of their granddaughters lived there while launching into adulthood. And, my SIL’s mother spent her final days in one of the downstairs apartments. Birth, death, and all the transitions in between: such is the legacy of the Stanyan Street house.

When the evening ended, my wife and I returned to Oakland with our son. The lights of the Bay Bridge glittered with holiday flair. My slumpiness from the myeloma had vanished temporarily, along with other aches and pains of disease and aging. The day’s activities had drained the jolt of energy caused by the drug. Yet, I still floated in the steroid’s groove and mused, without judgment, as to how my body is no longer entirely my own. It is managed, to a degree, by pharmaceuticals. That’s ok. I would not be alive without them. 

Still Lifes

“In every heart there is a god of flowers, just waiting

to stride out of a cloud and lift its wings.”

Mary Oliver from The Kookaburras

Still Life With Wildflowers

In late August of this year, of the summer when my wildflower garden flourished and yielded a wealth of colorful bouquets, crickets sang each evening their mindful refrain. “Soon,” they said, “the season will tip into autumn.”

In the garden, cosmos plants stretch beyond my height, seven feet or more. The flags of their flower petals flutter with the benediction of a breeze. Coreopsis and zinnias; daisies and coneflowers; bachelor buttons and black eyed Susans spill across the borders of the rocky path.

Poppies

Gardening focuses a too busy mind. Often, I am knuckle deep in soil and its mix of bugs, worms, and microbes. I breathe the earthy fragrance of organic material and enjoy common cause with other creatures.

Birds visit during the day. They pluck seeds from the same blossoms where bees nuzzled pollen. Beetles, spiders, and winged insects are drawn to the abundance of plants as they make their way through the territory of their brief lives.

Early Summer Wildflowers

Me too … I reap the peace of communing with wildlife and harvesting flowers that pose as still lifes in the kitchen and bedroom.

The late American poet, Mary Oliver, created still lifes with words rather than paint or photography. Her poetry arose from wandering in the hills and fields of New England. She developed a knack for finding the extraordinary in the ordinary.

Wildflower Bouquet

In her later years, she moved to Florida. She continued to write until the end of her life, taking inspiration from nature in the estuaries, ponds, and dunes of her new surroundings. At the age of 83, she died from lymphoma, a kissing cousin to my blood cancer, multiple myeloma.

My disease paints a picture similar to a still life: it doesn’t move, yet there is a fascination with the details. I have ups and downs but, basically, things are about the same this year as they were last summer when the season began to turn. I persist in a plateau phase with a lengthy history. The relevant blood markers remain stable, the treatments have not changed, and my quality of life is decent.

Still Life with Ukulele

Metaphorically, though, I am under house arrest. I don’t travel well due to the side effects of a busy treatment plan and Mr. Fatigue visits on a regular basis. Nonetheless, I approach 12 years since diagnosis. Cautious management and lots of luck has forestalled the incurability associated with MM.

There is much to be grateful for. Lately, it’s wildflowers, still lifes, and Mary Oliver. That’s plenty … until I write again.

 

Who Made The World

 

No Other Anywhere

Vietnam War Memorial

1969 was a hell of a year. Astronauts from Apollo 11 walked on the moon. The Beatles released their final album together, Abbey Road. A national draft lottery was held for men, aged 18-26, to determine their eligibility for military service. In Massachusetts, a tragic auto accident occurred on Chappaquiddick Island. Out west, Charles Manson’s cult committed horrendous murders. That summer, while thousands flocked to a music festival at Woodstock, New York, my father lay dying from complications of alcoholism. Last, but not least, Sesame Street aired its first show on PBS. In the background of all this commotion, war raged in Southeast Asia.

From ’67 to ’69, when I was 21-23, 1000 or more young American men died each month in the Vietnam War. This conflict, characterized by combat atrocities and clumsy military strategy, drove a wedge between Baby Boomers and their parents.

50th Anniversary Edition of Slaughter House Five

Sex, drugs, and rock ‘n’ roll music also influenced the psyche of my generation. I lived a somewhat dissolute life as a college student in San Francisco, supported by school loans and part-time jobs. I played the role of a poet; I partied; I chain smoked cigarettes and pot. Classwork plummeted to the bottom of my list of interests.

This period of arrested development wobbled, however, while watching the bad dream of Vietnam unspool on TV. The whirlwind of the war machine swirled. Its unstoppable momentum swept up young men not tied to a deferment. Mine was fragile. 

Apollo 11, The Movie.

Options other than college did exist for the un-deferred: jail, fleeing to Canada, and conscientious objector service. These unsatisfactory alternatives clashed with the well connected, who could “game” the system.

Our current president is renowned for suspect bone spurs. His republican predecessor has a military past checkered with skepticism. Bill Clinton, the third of my presidential peers, also muddied the waters of draft dodgery. 

Yes, ‘69 had a lot going on. The golden anniversary of some events, like the moon landing, deserve recognition. Scant attention, however, is paid to the draft lottery. Yet, that event, more than any other, changed the course of my life.

Harmony and Balance

The intent was to create a more equitable process. I drew a high number. In one short evening drama, I went from prospective casualty to survivor. Of those less fortunate, many had their lives derailed by a debacle that now occupies a place in America’s hall of shame.

Soon after the lottery, I dropped out of school. Chance dealt me a wildcard and I played to my instincts. I moved to the Sierra Mountains of California in search of solitude. Eventually, the harmony of nature brought balance back to my life. I lived in Yosemite National Park for the next five years without a car, TV, or phone. I met my wife there. I never returned to school.

Smart Phones

Today’s young men and women have unique concerns. Climate change, gun violence, and income inequality come to mind. Add to that the existential risk that smart phones trivialize their lives. There is much about which Gen Z can be cynical. Thankfully, unwanted conscription is not among their worries. Today’s military is all volunteer.

Remedies for wanton capitalism and gun violence might evolve with time. Solutions to climate change … I don’t know. We comprehend the danger but can’t relate to the consequences. And, change resists the imperative when everyone is complicit. Meanwhile, our forests and wildlife are under assault.

I’m 72. I won’t be around for the 50th anniversary of 2019’s events. After 44 years, I’ve come down from the mountains to live in town. It’s where I belong. I keep a small garden. There’s a cat.

Word

Harmony and balance remain elusive, just as they were in 1969. I got lucky. I lived a life of my own choosing, “far from the madding crowd’s ignoble strife.”

What, I wonder, will be celebrated 50 years hence? Brexit perhaps, the implosion of Venezuela, or maybe impeachment proceedings against an American president?

Whatever. 1969 was, indeed, a hell of a year. 2019? Its mysteries are yet to be fully revealed.

No Other Anywhere, a song of celebration.

Latest cancer markers in The Drill.

Oakland Noir

Oakland Noir

Three of the last five years, my wife and I have Christmased in the San Francisco Bay Area. We visit our son, my brother, and a niece. Our routine is similar: movies every night and dinners at an eclectic collection of restaurants.

We choose to stay in Oakland near the Bay Area Rapid Transit, or BART. Our hotel is close to the 12th Street station. No driving for us. The trains are gritty but reliable most days. If we can’t walk or BART to our destination, Uber/Lyft is an efficient alternative.

Chinatown intersection close to our hotel in Oakland.

Over the course of five days and four nights we saw Roma, Shoplifters, The Favourite, and Vice. Dinners afterwards were Sushi, a Southern Louisiana Kitchen, Hunan Cuisine, and Thai food. One morning, we had a late breakfast at a Mexican restaurant, Doña Tomás, and on another we feasted at the renowned Oakland Grill. Christmas Day we crossed the Bay Bridge to join my brother at San Francisco’s Yank Sing for a Dim Sum brunch.

In between movies and meals, we walked Oakland’s neighborhoods from the warehouse district through Chinatown to Lake Merritt. The ambience is blue collar. The city’s work ethic still breathes here. 

Mural at the world renowned Oakland Grill

Our preference for the east side of the bay evolved over time. San Francisco, my hometown no less, has lost its cool. The tech tsunami floods the city in money. Unless you are “grandfathered” into a rent controlled apartment, who can afford to live there? Housing costs in the city exclude the service class, the middle class, and the upper middle class. Buying a house? If you have to ask the price, well …

Mural in Oakland. The city’s wall art is remarkable.

Finally, though, it was the dystopia of the homeless on Market Street that pushed us away. No one seems able to imagine a solution. Locals wear blinders of resignation. Tourists, like us, gawk at the scrabble of destitute individuals. Last year, we side-stepped the feces, the urine, and the trash from a warren of panhandlers. Who, I wondered, is happy with this environment? 

Oakland street scene looking west from Broadway.

Co-incident with our most recent visit, the funding debate for “Trump’s Wall” reached an impasse and a portion of the federal government shut down. Thirty four days later, thousands of employees remain furloughed or working without pay. Seeds for a resolution have been planted. Yet, there’s little hope for germination.

The Bay Area’s high cost of living makes this shutdown a particularly onerous burden to bear. Many people harbor legitimate fears of being one crisis away from the street. And, should the shutdown continue, this may be that crisis.

Grand Lake Theater in Oakland

Congress passed a bill to reimburse government workers when the shutdown ends. Eventually, that should soften the blow of the president’s temper tantrum. Others, however, affected by the trickle down effects of the temporarily unemployed, will suffer without recompense.  

Suffering and fear and fear of more suffering seem to be defining tactics of the current administration. Family separations, Charlottesville, and Puerto Rico, come to mind. This is the style of our president, Captain Chaos. It’s a ruthless business ethic. It may play well in the world of high end New York real estate. But, probably not a good way to run a country … 

Inside the paywall of the Bart. Underground, things look clean. The elevators that get you there? Uh, not so much …

Nonetheless, we vacationed. Oakland’s version of the gentrification virus spreads. Zoning restrictions must change in order to address the housing shortage. But political will is ephemeral. Slowly, affluenza squeezes out those with modest paying jobs that once seemed adequate.

With the innocent aplomb of country bumpkins, we navigated the hassles of city life. Planes, trains, and Uber transported us through the wonders of the urban landscape. More and more, though, it resembles the prophetic sci-fi noir, Blade Runner.

The Albany Theater.

Politicians, elected to solve problems and to govern, have flipped the script. Now, they are the problem and refuse to govern. Perhaps the newly elected Congress can write another, different, screenplay in time for our next visit to the Bay Area. That’s the movie I really want to see.

The University of Cancer, Part 4

Love Potion #10-IVIG

Multiple myeloma is a chronic incurable disease. When I was diagnosed in 2007, the prognosis was three to five years. Little more than a decade later, due to advances in research, the statistics have improved. Some patients persist upwards of ten years. I fall into that category: one of the lucky ones.

Chronic means it doesn’t go away. You either treat the disease or risk having it run amok. The cancer subsides with treatment, but one drags around a significant baggage of side effects. 

MM is a nimble adversary. At first, there are plenty of ways to fight back. But each treatment has a finite period of effectiveness, therefore, the incurable tag. That’s how you manage multiple myeloma: you just kick cans down the road until you run out of cans …

I am an easy patient, passive as a cloud. I don’t demand or complain. I accept the discomforts: the teeter-totter of steroids, the malaise associated with most chemotherapy, and the many, many needle sticks.

Decisions, Decisions

For sixteen months, my last regimen consisted of a three drug combo that balanced disease control with side effects. It necessitated weekly visits to oncology for injections or infusions but I felt good … well, goodish. Last summer, the stability waned and toxicity from two of the drugs finally exceeded their benefits. I still had options. Nothing of what remained, however, offered a long term solution.

Myelomiacs, if they are fortunate, eventually reach this point. What, then, is the goal? They can move along and exhaust the options. Or, they can consider a clinical trial and treatments that have yet to be approved. 

Decisions, decisions.

The most promising trials revolve around a groundbreaking new “living drug.” It’s called Chimeric Antigen Receptor Therapy or CAR-T. The technique involves gathering T cells (a type of immune cell) from the cancer patient’s blood, engineering them in a lab so they will recognize cancer cells as an “enemy,” then reintroducing these weaponized T cells to the patient’s body.

The “Hutch”

Nationally, there are a dozen or more clinical trials of CAR-T aimed specifically at multiple myeloma patients. Last July, my wife and I consulted with a trial administrator in Seattle.

The consensus of opinion and early trial results affirm CAR-T as a viable treatment. Nonetheless, science is a process made whole by both success and failure. There are risks. Questions remain about the optimal dosage and durability of the methodology. The time commitment averages 30-60 days away from home, more if complications occur. There is no guarantee of admission or success. 

Still, hundreds seem willing to participate. For some, the trial might be a last ditch effort to buy more time. Others may have young children and hope to pre-empt the many temporary fixes with a single extraordinary treatment. 

My point of no return is not imminent. My children are grown and comfortable in their own lives. And, with the can currently being kicked down the road, I am seeing a bit of a bounce back from last summer’s decline.

Zero is normal. The trend has improved since mid-summer decline.

My treatment philosophy has always been that “less is more.” Yet hope tempts one to manipulate logic. I want to believe the CAR-T product is less than the more of doing the same thing with different drugs from the FDA’s medicine cabinet. Such is the allure of hype.

Veterans of this disease face a choice: to explore, or not, the outer edge of treatment modalities via a clinical trial. Scientific research extended the life span of an entire generation of MMers. The blood of participating volunteers fueled that improvement.

Is there more to come?

CAR-T science is beautiful, a source of wonder. To genetically modify one’s immune system is unprecedented. Each recruit into these trials marches to a drum beat of hope and an echo of doubt. Their leap of faith may seem prudent given the slow pace of the regulatory process. Certainly, the wiles of multiple myeloma won’t wait. And, though disease control may not be refined, perhaps some can capture the future.

 

Read all about it in The Drill.