Tag Archives: multiple myeloma

Letting Go. . . .

Letting Go (Courtesy of Bisayan Lady)

Letting Go (Courtesy of Bisayan Lady)

The long hiatus in my blog postings is due, in part, to the difficulty I have been having letting go. It has now been more than two months, since Sparky– my dearest friend, and occasional collaborator–passed away. When he wasn’t commandeering my blog, he was there on my shoulder, helping me to see the world in a different way. The time has come to say goodbye.

Sparky, or Spartacus as he was formally called, was a blessing in more ways than one. A gift from my student Mridulika Menon, Sparky was intended to help assuage my loss of his predecessor, a black lab-shepherd suitably named Diablo. We browsed the dog pictures in all the nearby shelters, but my husband Brock was unable to choose one from among the many to be left behind. Let’s just wait until a dog shows up on our door step, he resolved. And, much to my suprise, on the very next day, that’s precisely what Sparky did! There in my office door was Mridulika, cradling an ink-black puppy, which she had purchased on the streets of Georgetown. I was on my way to George Washington Hospital to pick up my husband, who was undergoing a minor medical procedure. Just before leaving, I called and asked the nurse to tell my husband that Spartacus would be accompanying me.

one smart dog

one smart dog

Sparky was not only intelligent, he had a special gift of empathy. No doubt he was sensitized to other people’s feelings and emotions early in life, for a year after he came to live with us, my husband was stricken with multiple myeloma, then thought to be an incurable cancer. Overcome with fear, I turned to Sparky and held him fast, absorbing his massive strength and fortitude. Years later, he was still there, his head in my lap, at the first sign of a tear. On his last day, the day I had to put him down, I struggled to hide my feelings. My greatest fear was that Sparky would sense my grief, and try to comfort me.

Grand Old Boy

Grand Old Boy

It was Spring Vacation, so I was able to stay home by myself, reliving and savoring my shared times with Sparky. Already I missed him so. As often happens with me, I found comfort in a book, a rather unusual and, I should add, controversial one at that.

Written by the physicist Evan Harris Walker, the book was entitled The Physics of Consciousness: The Quantum Mind and the Meaning of Life. Building on Heisenberg’s uncertainty principle, the entanglement phenomenon–or as Einstein described it “spooky at a distance'”–the concept of state vector collapse, as well as quantum tunneling, Walker contends that reality is non material; to the contrary, it is subjective–that is to say dependent upon the consciousness of a quantum observer. In individuals, this consciousness is the product of quantum tunneling, which is carried out among the synapses within the brain. As importantly, given the entanglement of the quantum world, and the irrelevance of time and space, consciousness must also be nonlocal, and therefore conceived of as a whole. When, according to Walker, we view it this way, we encounter God.

Having to negotiate myself through the scientific concepts inherent in Walker’s argument might have distracted me from my pain. However, I stayed on track by following the thread throughout Walker’s narrative that I shared with him: the whys and wherefores of life and death. As a backdrop to his major theme, Walker describes his quest to discover the meaning of his adolescent girlfriend’s death more than a half of a century ago. His account, in the context of his major argument, provided a great insight to me. I could reconnect with Sparky by employing my consciousness (skeptics might say imagination) to observe him wherever he might be. So, for the next few weeks, there he lay–a slightly unfocused mass of pixels–at the foot of my bed. It was not long, however, before he let me know that it was time for me to let him go. And so I did.

Getting Back to Speed~~The Road to Recovery

Currumbin Wildlife Sanctuary 058 from Michael Dawes

Currumbin Wildlife Sanctuary 058 from Michael Dawes

It’s commonplace to note the ups and downs in life. As they say in Spanish: la palma sube, y el coco baja. And yet, when we find ourselves at our own nadir, or in the midst of a deep recession, we often despair. The way back up seems so steep, and the recovery so slow. Worse yet, to garner hope, and seek a way out, we need someone, or something, to blame.

As I read the news each morning, searching for the slightest positive signs, I too am discouraged, but not so much by the slow pace of economic growth, or even by the slanderous attacks made against President Obama. Far more disheartening to me are the pontificating pundits,’ who, once having heralded Obama’s ascendence, are now unrelenting in their criticisms of him for failing to get it right.

Economic indicator from jakekrohn

Economic indicator from jakekrohn

One need only consider Elenor Clift’s recent piece in Newsweek, “The Problem With the Cult of Obama: Halfhearted Soul-Searching at the White House,” in which she calls upon the President to reinvent himself in accordance with voters’ aspirations. As the Jungian analyst Lawrence Staples, author of the book, Guilt With A Twist: The Promethean Way, might point out in response, winning praise–or an election, for that matter–is not the best measure of success. After all, Prometheus outraged the Gods when he stole fire from Zeus and gave it to mortals, but, in so doing, he greatly enriched humankind.
promethea.org

promethea.org

In like fashion, the Democrats poor election results might not reflect Obama’s inability to track the pulse of the American people, but rather his willingness to nonetheless take a risk, and diverge from the game of politics, in order to achieve what he believes to be overriding societal goals. (See, for such an argument, Ari Emanuel, “Forget the Carter Comparison: Obama is Following in the Footsteps of Harry Truman–and That’s a Very Good Thing.)

Turning the pundits’ criticism back upon themselves, one might ask: What have you done lately to stimulate recovery? To be sure, negativism is not the answer. Think about recovery from disease. Do you blame the sick person; do you lash out against God? These are self-defeating strategies. I know from personal experience, having been caregiver to my husband, Brock Evans, as he successfully battled stage 3a multiple myeloma. Most unhelpful were the doctors who slinked along his bedside, rolling their eyes behind his back, and cautioning him that “people in his condition don’t do very well.” On the other hand, what made all the difference in the world–that is to say, in addition to his own courage and fighting spirit– were the mailbags from well wishers reaffirming their love and cheering him on. One turning point came when he received a song, written for him by Carol King, appealing to him to “Hold On, Hold On.” It went like this:

You ask yourself the question
What am I going to do
How can I go on when life has let me down
You know it won’t be easy
But time will take you through
You can find your courage in the love inside of you

Hold on, Hold on . . .

So, as in the words of Hal David, it would seem that “What The World Needs Now, is Love Sweet Love, “ or, at the very least, some very enthusiastic cheerleaders.

Another Day of Reckoning

Day of Reckoning courtesy of Erik Kolstad

Day of Reckoning courtesy of Erik Kolstad

Driving to the airport to catch a plane to Utah, where my husband Brock was scheduled to have his semi-annual multiple myeloma check-up at the Huntsman Cancer Institute, I was reminded of Shakespeare’s famous quote:

A coward dies a thousand deaths a hero dies but one.

Perhaps then, I am a coward: for although we have been undergoing tests for almost seven years, each time we do so, my heart is in my throat.

for although we have been undergoing tests for almost seven years, each time we do so, my heart is in my throat.

Arriving in Salt Lake City, we settled into our hotel, our headquarters for the three-day evaluation procedures. The staff of the Cancer Institute inspires confidence. My husband–a former Marine–compares it to an elite military unit. I concur; but I would add that the people at the Huntsman center are as caring as they are competent. Clearly, they are accustomed to working with people on the precipice of death.

Day one is devoted to tests–urine collection, a pet scan, a bone marrow aspiration and extraction (ouch!), as well as a series of blood draws. Even though some of the procedures cause considerable pain and discomfort, our anxiety is kept in check by our efforts to adhere to the tight schedule. Over the day, patients move–as if playing a game of musical chairs–from one medical station to another. Reflecting the various stages of the disease, some are in wheel chairs; some wear protective masks; while others don a variety of headdresses. As we repeatedly encounter each other, we begin to bond, becoming distracted by conversation and gaining confidence and support from our shared, death-defying stories. Meeting others who are in the same boat, we are reminded that we are not alone. Never again can we say, why did this happen to us? Touched not only by the situation at hand, but also by the openness and intimacy with which we engage each other, I sense I am in a holy place, experiencing something sacred.

Raising the Roof At Ely Cathedral, from antonychammond

Raising the Roof At Ely Cathedral, from antonychammond

On the second day, however, our fears surge, driving our blood pressures to new highs.

On the second day our fears surge, driving our blood pressure to new highs.

While grateful that the day of poking, pricking, and prying is behind us, we feel helpless in the void. All we can do is wait, asking ourselves what if? and trying not to let our imaginations run away with us. Afraid of only exacerbating each others concerns, we deny our worries, turning to television for distraction. By evening, mounting tension shatters the silence. Holding hands, and lying side by side on the king-sized bed, we let go, sharing, yet one more time, our thoughts about life and death. Through tearful eyes, I describe to Brock my feeling that I am a prisoner in a room filled with echos of death, from which there is no escape. He reassures me, noting how we have transcended this situation before and will do so again. As he says, whatever happens, in whatever time we have left, we will spend it painting a beautiful mural on Death’s chamber wall, depicting our truly wonderful lives. With that thought in mind, I fall asleep.

Finally, the day of reckoning arrives. We meet our doctor, Guido Tricot, to learn our fate. Much like Heinrich Schliemann searching for the lost city of Troy, Dr. Tricot has been vigilant in his search for a cure for the dread disease, multiple myeloma, considered only seven years ago to be fatal. Over the past few years, he has changed this prognosis. Employing a protocol that entails carefully timed tandem stem cell transplants, together with a variety of mysterious chemo potions, Dr. Tricot has saved any number of lives. What about us? Reviewing the data from our medical tests, he turns to us, and in his gentle, dignified manner, announces the results. “Perfect, couldn’t be better, we are very pleased,” he said. Brock and I are also elated, as well as very grateful.

Red Canyon, Utah: The Land of the Gods, from Linda Garcia

Red Canyon, Utah: The Land of the Gods, from Linda Garcia

Reflecting on this topsy turvy world, in which life and death are so delicately balanced, I am reminded of complexity–that place situated between chaos and order. Thinking about the recent paper I have written with my colleague Garrison LeMasters, I recall too the romantic perspective of the world, which places the Gods and their shenanigans at the center of our fates. So I think: Perhaps the doctors represent the rational and orderly side of this equation, while the Gods represent randomness and chance.

What next? How to celebrate? Having paid our due to the doctors, we are off to Utah’s canyon country to pay our respect to, and play with, the Gods.