Tag Archives: Memorial Sloan Kettering Cancer Center

Am I too old to cut the mustard anymore?

As a consequence of radiation treatment for cancer, I am experiencing a side effect. Having difficulty swallowing. Frequent all-night vomiting. Must go to Memorial Sloan Kettering Cancer Center in Manhattan to have my esophagus stretched. It is a painful, uncomfortable, and lengthy procedure. However, afterward, I will be able to cut the mustard some more.

 

 

 

 

 

 

 

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Join the send Joel to the hospital to have his esophagus stretched club. Minimum membership: $18. Total fund-raising goal: $618.18. Must be raised by noon, Tuesday, April 24, 2018.

Members automatically receive before and after photographs of my esophagus. A special additional fee of $18 (total $36) will make it possible to contribute and not receive photographs.

Please PayPal your membership of $18 ($36 for the no photo option)to [email protected]

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Esophagus plus

This is what my esophagus looked like in 1976 before radiation treatment for cancer. Thank you WebMD for your helpful illustration  https://www.webmd.com/digestive-disorders/esophagus-18947

 

 

 

 

 

 

 

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Patient describes why he required the stretching of his esophagus–gory details but fortunately no esophagus pictures.

 

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Perhaps, after two weeks in the hospital at Sloan Kettering, then:

 

 

 

Fear

I am afraid.

The fear is linked to the CT scan I took on Thursday–in turn linked to my three experiences with cancer. In August 2013, Dr. Paul Russo (at Memorial Sloan Kettering Medical Center in New York City) removed a 7 centimeter tumor surrounding my right kidney. Pathology confirmed kidney cancer.

While discussing the forthcoming surgery, Dr. Russo said his plan to save the right kidney (which he did expertly) would remove the risk that I might be without any kidneys at all. He explained that two small tumors on my left side could develop and conceivably destroy my left kidney.

Frisson.

Last year, the left kidney tumors were 2 centimeters. Between then and now, have they increased in size? Last year, my doctors suggested after right kidney surgery, perhaps surgery and even chemotherapy might be indicated for my left side.

The CAT scan on Thursday will help determine what to do next.

This reality above is not the reason I am writing. Fear is the reason I am writing. Fear.

Suzhou_Humble_Administrator's_GardenThe advice given ranges from:

  • It is reasonable to worry; do not worry about worrying
  • Do not worry about what might happen; focus on the here and now

Advice be damned: The dominant reality of my daily life is fear.

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I was married once to a woman who poured salt over everything she ate. Everything she ate tasted like salt.

For the past few months I have been pouring fear over everything I eat; everything I eat tastes like fear. This imagery extends to everything I do. The fear creates a paralysis—work incomplete, dishes unwashed, the bathroom sink unscrubbed.

The two rules of my treatment plan (whether or not there is a treatment plan) must be:

  1. Learn to live with fear
  2. Figure out how to eliminate fear

According to Eastern thought, in the battle with Evil one must not confront Evil directly. I am certain Confucius is correct, but it sounds strange. Given my personality doing something strange with a good objective in mind is appropriate.

I wonder how I will proceed.

This posting is the beginning of a battle plan.

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Note 1: Fear and Evil are one and the same.

Note.  2: Despite my “advice be damned” remark I really do appreciate advice.

–30–

–Joel Solkoff, State College, PA, USA

Copyright 2014 by Joel Solkoff. All rights reserved.

[youtube]http://www.youtube.com/watch?v=lnErt_ff8-w[/youtube]

New York City Mayor Bill de Blasio’s inspiring inaugural address

 

Inaugural Address of Mayor Bill de Blasio:

“Progress for New York”

January 1, 2014

Mayor Bill de Blazio delivers his inaugural address
Mayor Bill de Blasio delivers his inaugural address

Editorial notes:

1. Finally, out of the politics of despair and retrenchment, a new leader has emerged from the Democratic party unafraid to express the values in which I believe. In this, Bill de Blasio’s inaugural address, he states:

Fiorello La Guardia — the man I consider to be the greatest Mayor this city has ever known — put it best. He said: I, too, admire the ‘rugged individual,’ but no ‘rugged individual’ can survive in the midst of collective starvation.”

" La Guardia revitalized New York City and restored public faith in City Hall. He unified the transit system, directed the building of low-cost public housing, public playgrounds, and parks, constructed airports, [and] reorganized the police force..." --Wikipedia
” La Guardia revitalized New York City and restored public faith in City Hall. He unified the transit system, directed the building of low-cost public housing, public playgrounds, and parks, constructed airports, [and] reorganized the police force…” –Wikipedia
2. What follows these editorial notes are excerpts from the speech I find especially relevant as well as the full text of de Blasio’s prepared remarks.
3. I am especially grateful to de Blasio for signaling out for distinction Harry Belafonte who de Blasio said, “we are honored to have with us here today.”Harry Belafonte was an early supporter of Dr. Martin Luther King, Jr. during the years when support mattered. In my 66 years, I believe that Dr. King was the greatest leader in my lifetime. King’s non-violent approach toward racial inequality prevented a bloody civil war. See:  http://www.joelsolkoff.com/dr-martin-luther-king-i-have-a-dream-speech-on-august-28-1963/. After King’s assassination, Harry Belafonte supported King’s family and worked tirelessly to keep Dr. King’s dream alive.

Harry Belafonte, actor, singer, civil rights activist
Harry Belafonte, actor, singer, civil rights activist

4. No matter where I live, I will always think of myself as a New Yorker. I was born in the City. My mother taught Hebrew in the City and received her doctorate in Hebrew Letters from the Jewish Theological Seminary. My grandmother Celia Pell’s apartment in Brooklyn was my home throughout my youth. Celia was an apparel worker, for decades sewing bras and girdles by day–doing what she described as “uplifting work.” She spent her nights playing Beethoven and Mozart on her piano for hours on end. My sister Sarah Schmerler, a distinguished art critic lives in the City as well as her author husband Robert Simonson and my nephew Asher, who will be bar mitzvahed in September.

5. I am a graduate of Columbia College and will be celebrating my 45th Reunion–a reunion filled with memories of the demonstrations of 1968 which all too slowly led to the end of the evil War in Vietnam.

6. Last year, I was diagnosed with kidney cancer where my physician here in State College, PA sent me to New York’s Memorial Sloan Kettering Cancer Center. The brilliant surgeon Dr. Paul Russo successfully removed my cancerous tumor and saved my right kidney. The day before my first appointment with Dr. Russo, at the suggestion of my friend Kathy Forer, I visited The Renzo Piano Morgan Museum and Library–providing dramatic comfort to the cancer experience.  The comfort continued during surgery and recuperation as I wrote and made videos about the Morgan and the brilliant architecture of Renzo Piano published by my editor Adrian Welch at http://www.e-architect.co.uk/editors/joel-solkoff.

7. I hope that Mayor de Blasio’s efforts to shatter the barriers between the wealthy and poor will result in government and private foundation grants to remove the expensive admission fees to the superb Morgan collection as well as the Frick, the Whitney, and other museums in the City. Mayor de Blasio’s efforts to make hospital emergency rooms accessible to the poor should lead in turn to an understanding that access to art should come without an admission fee because art’s therapeutic value has far too long been neglected.

–Joel Solkoff

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Excerpts from Mayor de Blasio’s Inaugural Address

–We see what binds all New Yorkers together: an understanding that big dreams are not a luxury reserved for a privileged few, but the animating force behind every community, in every borough.

–The spark that ignites our unwavering resolve to do everything possible to ensure that every girl and boy, no matter what language they speak, what subway line they ride, what neighborhood they call home — that every child has the chance to succeed.

–We are called to put an end to economic and social inequalities that threaten to unravel the city we love. And so today, we commit to a new progressive direction in New York.

–Nearly a century ago, it was Al Smith who waged war on unsafe working conditions and child labor.

[Note: It was Al Smith who said, “The only cure for the ills of democracy is more democracy.”]

–It was Franklin Roosevelt and Frances Perkins who led the charge for the basic bargain of unemployment insurance and the minimum wage.

[Note: Francis Perkins said, “What was the New Deal anyhow? Was it a political plot? Was it just a name for a period in history? Was it a revolution? To all of these questions I answer ‘No.’ It was something quite different… It was, I think, basically an attitude. An attitude that found voice in expressions like ‘the people are what matter to government,’ and ‘a government should aim to give all the people under its jurisdiction the best possible life.'”]

–It was Fiorello La Guardia who enacted the New Deal on the city level, battled the excesses of Wall Street, and championed a progressive income tax.

–When I said we would take dead aim at the Tale of Two Cities, I meant it. And we will do it. I will honor the faith and trust you have placed in me. And we will give life to the hope of so many in our city. We will succeed as One City. We know this won’t be easy; It will require all that we can muster. And it won’t be accomplished only by me; It will be accomplished by all of us — those of us here today, and millions of everyday New Yorkers in every corner of our city.

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Full remarks as prepared: Mayor de Blasio’s Inaugural Address

Thank you, President Clinton, for your kind words. It was an honor to serve in your administration, and we’re all honored by your presence. I have to note that, over 20 years ago, when a conservative philosophy seemed dominant, you broke through – and told us to still believe in a place called Hope.

Thank you, Secretary Clinton. I was inspired by the time I spent on your first campaign. Your groundbreaking commitment to nurturing our children and families manifested itself in a phrase that is now a part of our American culture – and something we believe in deeply in this city. It Takes A Village.

Thank you, Reverend Fred Lucas Jr., Rabbi Joseph Potasnik, Monsignor Robert Romano, and Imam Askia Muhammad for your words of prayer.

Thank you, Governor Cuomo. Working with you at HUD, I saw how big ideas can overcome big obstacles. And it will be my honor to serve shoulder-to-shoulder with you again.

Thank you, Mayor Bloomberg. To say the least, you led our city through some extremely difficult times. And for that, we are all grateful. Your passion on issues such as environmental protection and public health has built a noble legacy. We pledge today to continue the great progress you made in these critically important areas.

Thank you, Mayor Dinkins, for starting us on the road to a safer city, and for always uplifting our youth – and I must say personally, for giving me my start in New York City government. You also had the wisdom to hire a strong and beautiful young woman who walked up to me one day in City Hall and changed my life forever.

Chirlane, you are my soulmate — and my best friend. My partner in all I do. My love for you grows with each passing year. Chiara and Dante, I cannot put into words the joy and the pride that you bring your mother and me. You are the best thing that’s ever happened to us, and we love you very much.

And finally, thank you to my brothers Steve and Don, and all my family assembled today — from all around this country, and from Italy. You have always guided and sustained me.

Thank you, my fellow New Yorkers ‑- my brothers and sisters — for joining Chirlane, Chiara, Dante, and me on this chilly winter day.

De parte de Chirlane, Chiara, Dante y yo, les extiendo las gracias a ustedes, mis hermanas y hermanos niuyorquinos, por acompañarnos en este dia tan especial.

Like it is for so many of you, my family is my rock. Their wisdom, their compassion, and their sense of humor make each day a gift to cherish.

But, what makes today so special isn’t just my family, but our larger New York family. We see what binds all New Yorkers together: an understanding that big dreams are not a luxury reserved for a privileged few, but the animating force behind every community, in every borough.

The spark that ignites our unwavering resolve to do everything possible to ensure that every girl and boy, no matter what language they speak, what subway line they ride, what neighborhood they call home — that every child has the chance to succeed.

We recognize a city government’s first duties: to keep our neighborhoods safe; to keep our streets clean; to ensure that those who live here – and those who visit – can get where they need to go in all five boroughs. But we know that our mission reaches deeper. We are called to put an end to economic and social inequalities that threaten to unravel the city we love. And so today, we commit to a new progressive direction in New York. And that same progressive impulse has written our city’s history. It’s in our DNA.

Nearly a century ago, it was Al Smith who waged war on unsafe working conditions and child labor. It was Franklin Roosevelt and Frances Perkins who led the charge for the basic bargain of unemployment insurance and the minimum wage. It was Fiorello La Guardia who enacted the New Deal on the city level, battled the excesses of Wall Street, and championed a progressive income tax.

From Jacob Riis to Eleanor Roosevelt to Harry Belafonte — who we are honored to have with us here today — it was New Yorkers who challenged the status quo, who blazed a trail of progressive reform and political action, who took on the elite, who stood up to say that social and economic justice will start here and will start now.

It’s that tradition that inspires the work we now begin. A movement that sees the inequality crisis we face today, and resolves that it will not define our future. Now I know there are those who think that what I said during the campaign was just rhetoric, just “political talk” in the interest of getting elected. There are some who think now, as we turn to governing – well, things will continue pretty much like they always have.

So let me be clear. When I said we would take dead aim at the Tale of Two Cities, I meant it. And we will do it. I will honor the faith and trust you have placed in me. And we will give life to the hope of so many in our city. We will succeed as One City. We know this won’t be easy; It will require all that we can muster. And it won’t be accomplished only by me; It will be accomplished by all of us — those of us here today, and millions of everyday New Yorkers in every corner of our city.

You must continue to make your voices heard. You must be at the center of this debate. And our work begins now. We will expand the Paid Sick Leave law — because no one should be forced to lose a day’s pay, or even a week’s pay, simply because illness strikes. And by this time next year, fully 300,000 additional New Yorkers will be protected by that law. We won’t wait.

We’ll do it now. We will require big developers to build more affordable housing. We’ll fight to stem the tide of hospital closures. And we’ll expand community health centers into neighborhoods in need, so that New Yorkers see our city not as the exclusive domain of the One Percent, but a place where everyday people can afford to live, work, and raise a family. We won’t wait. We’ll do it now.

We will reform a broken stop-and-frisk policy, both to protect the dignity and rights of young men of color, and to give our brave police officers the partnership they need to continue their success in driving down crime. We won’t wait. We’ll do it now.

We will ask the very wealthy to pay a little more in taxes so that we can offer full-day universal pre-K and after-school programs for every middle school student. And when we say “a little more,” we can rightly emphasize the “little.”

Those earning between $500,000 and one million dollars a year, for instance, would see their taxes increase by an average of $973 a year. That’s less than three bucks a day – about the cost of a small soy latte at your local Starbucks.

Think about it. A 5-year tax on the wealthiest among us – with every dollar dedicated to pre-K and after-school. Asking those at the top to help our kids get on the right path and stay there. That’s our mission. And on that, we will not wait. We will do it now.

Of course, I know that our progressive vision isn’t universally shared. Some on the far right continue to preach the virtue of trickle-down economics. They believe that the way to move forward is to give more to the most fortunate, and that somehow the benefits will work their way down to everyone else. They sell their approach as the path of “rugged individualism.”

But Fiorello La Guardia — the man I consider to be the greatest Mayor this city has ever known — put it best. He said: “I, too, admire the ‘rugged individual,’ but no ‘rugged individual’ can survive in the midst of collective starvation.”

So please remember: we do not ask more of the wealthy to punish success. We do it to create more success stories. And we do it to honor a basic truth: that a strong economy is dependent on a thriving school system. We do it to give every kid a chance to get their education off on the right foot, from the earliest age, which study after study has shown leads to greater economic success, healthier lives, and a better chance of breaking the cycle of poverty.

We do it to give peace of mind to working parents, who suffer the anxiety of not knowing whether their child is safe and supervised during those critical hours after the school day ends, but before the workday is done. And we do it because we know that we must invest in our city, in the future inventors and CEOs and teachers and scientists, so that our generation – like every generation before us – can leave this city even stronger than we found it.

Our city is no stranger to big struggles — and no stranger to overcoming them.

New York has faced fiscal collapse, a crime epidemic, terrorist attacks, and natural disasters. But now, in our time, we face a different crisis – an inequality crisis. It’s not often the stuff of banner headlines in our daily newspapers. It’s a quiet crisis, but one no less pernicious than those that have come before.

Its urgency is read on the faces of our neighbors and their children, as families struggle to make it against increasingly long odds. To tackle a challenge this daunting, we need a dramatic new approach — rebuilding our communities from the bottom-up, from the neighborhoods up. And just like before, the world will watch as we succeed. All along the way, we will remember what makes New York, New York.

A city that fights injustice and inequality — not just because it honors our values, but because it strengthens our people. A city of five boroughs — all created equal. Black, white, Latino, Asian, gay, straight, old, young, rich, middle class, and poor. A city that remembers our responsibility to each other — our common cause — is to leave no New Yorker behind.

That’s the city that you and I believe in. It’s the city to which my grandparents were welcomed from the hills of Southern Italy, the city in which I was born, where I met the love of my life, where Chiara and Dante were raised.

It’s a place that celebrates a very simple notion: that no matter what your story is – this is your city. Our strength is derived from you. Working together, we will make this One City. And that mission — our march toward a fairer, more just, more progressive place, our march to keep the promise of New York alive for the next generation. It begins today.

Thank you, and God bless the people of New York City!

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December motto plus optional isolation

CanceroustumorsurroundingrightkidneyDr. Jeniffer Simon, a caring and experienced urologist, Geissinger Medical Center, State College PA showed me on her computer this image–a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York City. “Unless you have surgery quickly, you will be dead in 10 years.” The date: April 5, 2013, 4 P.M. We hugged; I cried.

The order of this posting (typically presented in a hodgepodge of disorder):

  1. Motto
  2. Paraplegia and the recollection of previous cancers
  3. The last part of cancer therapy
  4. Optional isolation
  5. Joanna’s wedding
  6. This I believe

Motto

Make haste slowly is the motto.

Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: "Make haste slowly."
Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: “Make haste slowly.”

I first came across this seemingly contradictory expression when trying to learn Latin: Festina lente.

Unless one is in a situation such as mine, Make haste slowly appears to make no sense.

Speed and slow are opposites.

The last part of cancer therapy

My situation comes at the end of a difficult time.

The time began in April when I was diagnosed with kidney cancer and reached medical optimism after I left my home in State College, PA where the expertise to save my life did not exist.

This is my first "step" in getting to New York.
My first “step” in getting to New York.

I was referred to Memorial Sloan Kettering Cancer Center in New York City—a five hour car ride away. On August 8th, Dr. Paul Russo removed the cancerous tumor, saved my right kidney, and essentially prevented me from dying of kidney cancer. It was a gift of 10 years.

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In The Canary Murder Case by S.S. Van Dine, Philo Vance—almost certainly the most obnoxious snob in the history of detective literature—is helping his friend the district attorney solve a difficult murder. The district attorney says, “’Well, well! So the case is settled! Now if you’ll but indicate which is the guilty one, I’ll arrest him at once, and return to my other duties.’”

“’You’re always in such haste,’ Vance lamented. “Why leap and run? The wisdom of the world’s philosophers is against it. Festina lente, says Caesar; or, as Rufus has it, Festinatio tarde est. And the Koran says quite frankly that haste is of the Devil. Shakespeare was constantly lamenting speed. ‘He tires that spurs too fast betimes.’”

Still from the 1929 film version of The Canary Murder Case
Still from the 1929 film version, The Canary Murder Case

Vance, whose name in 1927 became synonymous with private detective, goes on to quote Moliere, Chaucer and the Bible on the subject.

My energy level is sufficiently low and my acuity high enough I understand Vance’s point without citing the additional paragraph.

Paraplegia 

For the past 20 years, I have been a paraplegic unable even slowly “to leap and run.” Paradoxically, in high school I received a letter sweater for running 2 ½ miles regularly during cross-country competitions. My best record was clocked running two miles in less than 12 minutes, hardly the Olympics, but good enough for Cheltenham High School  in Wyncotte, PA.

Yes, I would like to leap and run. There are a lot of things I would like to do that I cannot.

What I want to do is live life to the full and in the process make a contribution along the path I have committed myself.

I certainly have done a lot of living in the past 20 years as a paraplegic. In one of my three trips across the United States from sea to shining sea, I took my battery-powered scooter and drove it around the rim of the Grand Canyon.

In California, I watched my elder daughter Joanna train a horse to jump a fence. As I watched, the horse did something amazing. After going over the fence for the first time, the horse did a double-take, shaking its head as if to say, “I do not believe I did that.” Joanna’s smile of accomplishment…

In Santa Cruz, one glorious day, Amelia my younger daughter and I boarded a ship and watched whales frolicking.

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Isadora Duncan
Isadora Duncan

For a while, I chose the Isadora Duncan School of Dance rather than rehabilitation–both dance and physical rehabilitation have become an essential part of my doxology.

The brilliant physical therapist Alicia J. Spence at State College's Phoenix Rehab begins; it is time for me to return to her.
The brilliant physical therapist Alicia J. Spence at State College’s Phoenix Rehab begins; it is time for me to return to her.

In the Silicon Valley, I wrote a technical manual for KLA-Tancor on inspecting silicon wafers for defects. Often, I scrubbed down, putting on a white gown and hat; wheeling into the clean room where my readers would be using the documentation.

The recollection of previous cancers

After radiation treatment for cancer, I fathered my two children, published three books, and loved and was loved in return.

The experience of having cancer twice, first at age 28 then at 42—treatment which burned my spine and made me unable to walk certainly slowed me down. It did not stop me. Nor has the experience of having cancer for the third time at age 65 stopped me.

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“The Roman historian Suetonius… tells that Augustus… thought nothing less becoming in a well-trained leader than haste and rashness, and, accordingly, favorite sayings of his were: ‘More haste, less speed’; ‘Better a safe commander than a bold’; and ‘That is done quickly enough which is done well enough.'”

Wikipedia continues, “Gold coins were minted for Augustus which bore the image of a crab and a butterfly, which was considered to be emblematic of the adage. Other pairings used to illustrate the adage include a hare in a snail shell; a chameleon with a fish; a diamond ring entwined with foliage; and, especially, a dolphin entwined around an anchor. Cosimo I de’ Medici, Grand Duke of Tuscany had festina lente as his motto and illustrated it with a tortoise with a sail upon its back.”

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Frequently, I suspect I have not learned from experience.

The same mistakes seem to repeat themselves in predictable order. This is most often the case with loss of energy. So often have I felt my body filled with power and enthusiasm that when the power disappears and getting out of bed becomes a chore, a dark cloud seems to hang over me.

The cloud is not there now.

Recovery from surgery has surprised me by its slow pace.

When I returned from New York in August, the combination of weakness and pain made me grateful to be alone.

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One consequence of my receiving a cancer diagnosis in April of this year is that the telling provoked waves of  affection and attention not merely from those close to home.

A woman whom I had loved intensely in 1972 ( not seen or heard from since) read here on this site an optimistic account of my situation and responded with an e-mail followed by phone calls. We talked about the children we did not have together, the life we did not share, and the strangely odd and encouraging fact that affection untended continues despite the reality that it had its origins so long ago.

Friends appeared with whom I had lost contact for decades. My expectations of how good people could be to me were vastly exceeded by reality. I have emerged from surgery with the feeling of being cherished. Nothing I can say or do can ever repay my gratitude. You know who you are and yet you do not truly appreciate how much you have graced my heart.

Often I feel words used to describe me are wrong, just wrong. I do not think of myself as “brave” or “courageous” or a “fighter.” When I think of myself, which I do often, I try to stop—meditate and in my own fashion pray that the ego will dissolve and I will just continue, pursue the path.

Optional isolation

Late in August, back at my apartment, alone, feeling that strange happiness that comes when intense pain disappears, whoever I am is comfortable to me. By nature I am impatient. By nature, I am persistent. Then, the phrase make haste slowly serves as a comfort. I will do what I need to do when the time comes. I will be grateful for energy and understanding when I cannot do what needs to be done. If the sky falls and I do not have the strength to stop it, the sky falls. Such is life.

Joanna’s wedding

Before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend  Ben Carlsen drove from State College to New York to bring me back home.
Three months before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.

Going to Joanna’s wedding in October appears now on the second day of December a miraculous event. Weeks before I boarded the plane, I did not believe the energy would return. I persisted. Giving away my elder daughter on a farm in Mebane, North Carolina produced euphoria that brought me through and carried me home on Delta Airlines.

Amelia was my caregiver at  the American Cancer Society's Hope Lodge in NYC where we roomed together before, during, and after my surgery.
Amelia (right) was my caregiver at the American Cancer Society’s Hope Lodge in NYC where we roomed together before, during, and after my surgery.

At the wedding it was a delight seeing Amelia again in North Carolina a seeming aeon away from New York , saying goodbye before she returned to Spain for her third extended trip.

I loved:

  • Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York

sarahatwedding

  • Revisiting my 12 year-old only nephew Asher Simonson with his unexpected moments of humor
  • Seeing his father Robert Simonson who had lugged my mobility devices around the Island of Manhattan
  • My son-in-law Jade Phillips and his firefighting colleagues who, when the festivities were over and the bonfire burned out, literally picked up my exhausted body and flung me into the passenger side of a truck

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Then fatigue. Delight in being alone. Concern I would not finish the work I must finish. Optional isolation. Appearing outside my apartment only occasionally. Seeing as few people as possible. Avoiding crowds, large gatherings, and familiar places where I have been surrounded by affection.

Periodically, I receive calls, visits, e-mails and reports of those who ask with affection and concern “Where’s Joel?”

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Life continues.

A dear friend becomes sick. Miles and often even a few blocks I do not have the energy to travel keep me from being where I would otherwise like to be.

I sit in my apartment and wait. A rush of energy and I find myself writing, as I am writing now, without stop, expressing while leaving dishes unwashed, my bed unmade, not yet able to complete rigorous academic writing—not quite able to pull together a large project.

Instead, I follow whim. I have been making You Tube videos—going off to a computer in the patient company of an expert in iMovie editing software, collapsing, returning, making slow steady progress as bills pile up, consistently refusing to think about the money I do not have and the energy I do not have to obtain it.

I have been reading Robert Alter’s The Book of Psalms, his introduction tracing the psalms’ origins back to the Bronze Age over 3,000 years ago, reciting his clear translation, going to the Hebrew, recalling my mother never left the house without a small Hebrew copy of Psalms in her pocketbook, dipping into David Halberstam writing about Elvis Presley, reading a paragraph here and there about architecture, engineering, virtual reality—not doing much for long, but doing and then in fatigue watching by choice vapid Netflix videos for hours.

The last part of cancer therapy

I hope to encourage others like me who are recovering to recognize our temporary limitations and persevere.

Most do not recognize the difficulties involved in recovering from cancer after the disease is gone but the energy has not returned.

[To be inserted here observations about suicide attempts by survivors. This issue I discuss in my book Learning to Live Again, My Triumph over Cancer available on this site http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/].

While researching, I came across a footnote in a medical journal article. A young man with the most dangerous stage of Hodgkin’s disease had killed himself after being cured. The autopsy revealed no cancer was present in his body.

Surviving while still recovering can be a hard time unless one is willing to believe in the future. Henry David Thoreau should be an encouragement to those us living in situations such as the one I am now in. Thoreau wrote, “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”

My life seems to have been lived on the principle that best way to get from here to there is NOT to go in a straight line.

I have been watching You Tubes of Edward R. Murrow, my hero. This one caught my fancy yesterday at 2 in the morning.

This I believe

I believe:

  1. I am alive for a purpose.
  2. The attempt to achieve the purpose, which I choose to call my path in homage to Laozi, serves not only its own end but to unite all that is sacred to me; namely, my children (of course) who are adults and have lives of their own; my sister Sarah and my family, my friends who are family; my love for women (a woman were the right woman in my bed); the need to care for myself, be independent in body and mind, be a good citizen who embraces not only my country but my mother Earth, and the need to be the human being I strive to be who believes in the spirit that gives us life.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way, gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way (The Path), gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.

3. My chosen path is to help the elderly and disabled achieve their potential.

4. Along that path is the virtue of technology which makes it possible for me to go seamlessly from my bed to my kitchen out the door and into the world on scooters like the kind that my dear friend Al Thieme of Amigo Mobility invented which he refers to as Power Operated Vehicle scooters or POV scooters to distinguish them from toys. The technology mobility path includes power chairs and equipment being developed at an astonishingly rapid pace. The consequence of this technology is I do not think of myself as one whose disability prevents me from living life to the full. For individuals with hearing and visual disabilities technology has developed to the point where, for example, an individual blind from birth can drive an automobile specially equipped with laser scanning of the road;  the automobile provides the driver computer-voice simulated operated instructions.

Thank you Wired Magazine: http://www.wired.com/autopia/2009/07/blind-driver-challenge/
Thank you Wired Magazine

Totally blind drivers have passed tests on intentionally difficult driving courses. I believe in my lifetime the Commonwealth of Pennsylvania will issue drivers licenses to individuals who are totally blind but who have proven their ability to drive sophisticated vehicles such as the ones already produced by the Virginia Tech’s Robotics and Mechanisms Laboratory.

Amigo manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia's college graduation.
Amigo Mobility manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia’s college graduation.

5. My path is focused on what the architectural, engineering, and construction community refer to as the built environment. See, for example, my biographical information and published work for e-architect: http://www.e-architect.co.uk/editors/joel-solkoff

6. To rebuild the environment, the promise of virtual reality is real. Virtual reality is a promise my 30 year-old mentor Sonali Kumar introduced to me as I worked with her as a research assistant at Penn State’s Architectural Engineering Department to complete her doctoral dissertation entitled: Experience-based design review of healthcare facilities using interactive virtual prototypes. 

VirtualRollinshower

Sonali apologized when she used me as the model for this avatar. “I am sorry I put so much gray in your hair. You do have a lot of gray in your hair.”

Fashion aside, one of my contributions to Sonali’s animated three-dimensional model of an independent-living-aging-in-place home was the suggestion she replace the original bathtub with a roll in shower. As a paraplegic for whom being clean is vital, I have all too often been trapped in a bathtub–on one occasion it took me 45 minutes to figure out how to get out of the tub finally using my arms to push me out, pulling my legs after me as I landed onto a dirty bathroom floor.

7. Experienced-based design is essential. Experienced-based design is one of a number of academic terms meaning the best way to design an environment is to ask the person who will use it. The example that comes most readily to mind is an article I read about a new hospital in the Philadelphia area. The article complemented the hospital administration for asking patients at the previous facility what changes they would suggest making to the design of the new building to make the hospital more patient-friendly. The patients suggested making it easier to get from bed to bathroom by making the bathroom closer to the bed. The article praised the administration for the reduction in falls as a consequence. [I know. My instant reaction to that was Daaaaaaaaaaaahh.] Asking does matter. Ask experts like me, for example, or my neighbors at Addison Court (an independent living apartment building for the elderly and disabled) whom I arranged to view Sonali’s model wearing 3-D glasses at Dr. John Messner’s Immersive Construction Lab for Construction industry. The consequence is we have the experience to instruct the design of the environment around us so that it is more efficient. The result is not merely an exercise in odd-sounding academic words such as case studies, scenarios, and activities of daily living (ADL); it is also a good idea.

SloanBath

8. Self reliance should be encouraged. Shown here

[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]

9. Knowing when to ask for help.

Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.
Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.

To be continued.

Meanwhile, here is Edward R. Murrow  interviewing then former President of the United States Harry S Truman on what Truman believes. http://thisibelieve.org/essay/17058/

President Truman is followed by a bad video of an Alan Jackson song. I like the theme. I like the song.

–Joel Solkoff

Copyright 2013 by Joel Solkoff. All rights reserved.

 

My first cancer survival at age 28

I have been describing my third cancer experience at age 65 when I was diagnosed in April in State College PA and had a successful operation in August in New York City at Memorial Sloan Kettering Cancer Center.

  • How did I survive cancer three times?
  • How was I able to father two daughters after massive radiation treatment?
  • Why was cancer treatment responsible for my becoming a paraplegic?
  • What was my emotional state during these three experiences which otherwise might have forced me to concentrate on death rather than enjoying life?

++++

Answers may be difficult to provide, but what follows is my first attempt to use language for the ineffable.

Five years after my experience with Hodgkin’s disease, my publication on the subject in The New York Times, my appearance on ABC’s Good Morning America, I received a book contract and proceeded to interview formally (receiving signed releases) and on tape the accounts of my:

  • Oncologist
  • Lover
  • Surgeon
  • Mother
  • Father
  • Friends
  • Therapists
  • Members of the therapy group who first learned I had cancer

Writing the book was difficult especially revisiting the radiation treatment room at George Washington University Medical Center where the chief radiologist had died from exposure to his own machines.

Making the difficult an easy read was also difficult and slow.

What follows is Chapter One of Learning to Live Again, My Triumph Over Cancer.

[Readers desirous of obtaining the entire book, praised by the prestigious Library Journal, may download it here and now. http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/

What follows is the entire chapter one of Learning to Live Again: My Triumph Over Cancer, published by Holt, Rinehart, and Winston, then a subsidiary of CBS.

++++

Chapter 1

I DO NOT HAVE CANCER ANYMORE. The disease was treated by conventional radiation therapy, and my physicians say that it has been eradicated. I believe that I have been cured, despite a recurring nightmare that a doctor is examining my body, checking for lumps.

Today, I had lunch with Laura in the oak-paneled dining room of the Hay-Adams Hotel. We each had two drinks and needed more. Our love affair became a casualty of the cancer cure. Too much intensity was confined to too short a period of time, time that always seemed to be running out. Although we tried afterward, we were unable to salvage our relationship. Today, I told Laura that I am engaged to marry another woman—Diana, whom I met after the cancer experience was over. Laura and I toasted to the future—a future that we will not share.

It is spring here in Washington. The cherry blossoms are out early.

Spring this year feels the same as it did five years ago. I continue to live in the same city and in the same apartment. At thirty-three, I am too young to write my memoirs. Yet that is what I am doing, reliving the period five years ago when I was diagnosed as having cancer and feared death. The diagnosis and its treatment—over a period of six months—was the worst experience of my life. Remembering how poorly I behaved is worse than remembering the physical pain and the fear.

Now, five years later, my statistical category has changed. Today I conform to the American Cancer Society’s definition of cured: five years without a recurrence of symptoms. A generation ago my type of cancer, Hodgkin’s disease, was described as “invariably fatal.” A generation ago I could not have survived five years. I would not have lived to interview family, friends, and physicians, nor to revisit the hospital in which I was operated upon and treated. The difficulties of remembering and surviving would have been denied me.

ON FRIDAY AFTERNOON, April 23, 1976, I am sitting in a doctor’s office worrying. Worrying is something that I do a lot and am good at. At the time I do not realize that I have much more reason for concern than when I normally worry about (a) money, (b) getting the article in on time, (c) my relationship with Laura, (d) finishing the book, (e) cleaning the apartment, and so on. Specifically, I am in the waiting room of Aaron Falk’s * office because there is a small lump—about the size of a golf ball—under my right arm. The lump does not hurt, and it is noticeable to no one but me. However, it has been there for a number of weeks, and several times a day I find myself feeling under my armpit to check whether it has gone away. The lump has joined my mental list of things to worry about.

Given how regularly I worry about my health—running to a doctor’s office at the first sign of a cold, a sore throat, or a backache—I do not anticipate that my first appointment with Dr. Falk will be noticeably different from previous appointments with other doctors. My experience as a mild hypochondriac is that doctors find my ailments boring. I leave their offices feeling embarrassed for bothering them and stupid for paying so much money to find out that there’s nothing wrong with me.

Indeed, I have made the appointment because I want to be reassured that nothing is wrong with me. This time I am sufficiently concerned about the lump that I am willing to risk the likely embarrassment and expense. However, the longer I sit in the waiting room, the more convinced I become that the lump is inconsequential and that it will probably disappear if I wait long enough. I am convinced that Dr. Falk, whom I have yet to meet, will be polite, but in a tone that will imply that doctors go to medical school to cure really sick people and why does he have to waste his time seeing obviously healthy people like me.

As I read the plastic sign welcoming patients to talk about physician fees with the physician, I decide that now that I am in the doctor’s office, I can stop worrying about the lump and start worrying about money. My concern about money at this time has a rational aspect to it. As a free-lance writer my income is precarious. I have difficulty obtaining insurance. My previous policy, with Stan, a friend of a friend who agreed to let me join his group plan, was terminated because Stan pocketed the payments rather than sending them to Blue Cross. That experience has made me feel insecure about my current plan, with the newly formed Washington Independent Writers. The paperwork is already fouled up. Despite the organization’s reassurance that my membership card has been processed and is in the mail, I worry that I may not be covered by insurance at all. So as I appraise the doctor’s office, which is in an expensive neighborhood, provides free parking for its patients, has its own laboratory on the premises, and offers a spacious waiting room (where a large potted plant has cedar chips covering the soil), I am concerned that the tests and doctor’s fee will be more than I can afford—and all for a complaint that will probably turn out to be nothing.

Aaron Falk begins, as doctors do, by asking why I have come to see him. I tell him about the lump under my arm, that it has been there for several weeks, that it doesn’t hurt, and that it hasn’t gone away. I ask, “Is it serious?”

He says, “I don’t know yet. First let’s get the usual questions out of the way. Then we’ll go next door where you’ll take your clothes off and I’ll examine you. We’ll take some routine blood tests and a chest X ray. When we’re done with that we’ll come back here and I’ll tell you what I think, assuming I think anything. Okay? Now, how old are you?”

“Twenty-eight.”

“Profession?”

“I’m a writer, specializing in agricultural policy.” We talk about that for a while.

We get along instantly. Our ability to communicate seems uncanny. There are not the usual barriers that separate doctor from patient. Dr. Falk is only seven years older than I, so we relate as peers. He is not condescending toward me, as are physicians who make themselves inaccessible because of their specialized knowledge.

BY THE END Of the day, I was calling him by his first name, because it seemed artificial for him to call me Joel while I was calling him Dr. Falk. In retrospect, I must have decided to trust Aaron as soon as we met, when I entered his private office and sat down on the wood-and-wicker chair.

At the time of this first visit, I knew nothing about his educational background. Dr. Falk graduated from Harvard College and went to the University of Pennsylvania Medical School. I also did not find out, until much later, that Dr. Falk and I shared a similar religious upbringing: he attended the Hebrew Academy of Washington; I went to the Hebrew Academy of Miami Beach. While I soon rejected the ritual and ever-present discipline of orthodox Judaism, Dr. Falk continued to observe it. Indeed given the additional distance I was then putting between myself and Judaism, if I had known about our shared religious background, it would have put distance between us.

AARON is the same height as I am-5 feet 10 inches. He is thin and although prematurely gray, he looks younger than he is. Our preliminary small talk clearly makes him impatient, an impatience he has difficulty curbing. He recognizes the necessity of getting acquainted, but fidgets as he sits, uncertain about what to do with his large hands and arms, patently restraining the impulse to dash down the corridor and “do something.” This impatient, almost distracted manner extends to his dress. He is wearing a regulation jacket and tie, but it is that and no more, he looks neither dapper nor even coordinated, his clothes the expression of a man who has more important concerns. He talks in spurts, the way professors do who are more comfortable with scholarship than students. Sentences are strung together rapid-fire, followed by long pauses while he weighs each word. He suspects that he’s transparent and that everyone knows what he’s thinking when he’s thinking it. So Aaron smiles a lot during his embarrassed pauses or when I am talking too long, as if to say, Dealing with people comes awkwardly, but I want you to like me. The smiles work. His eyes light up, expressing interest, even tenderness.

“Marital status?” Aaron asks.

I must be more frightened than I realize. Rather than say, “Single and divorced,” which is how I usually automatically answer the question, I launch into an exposition on the intricacies of New York State’s divorce laws, which five years previous made it more convenient to get an annulment than a divorce. When I respond to a simple question with a long, irrelevant answer, it means that I don’t want to deal with whatever’s going on.

On the way to the examination room he asks how I’ve been referred to him. I say, “I see Dr. Bernstein” (an ear-nose-and-throat specialist whom I visit for colds and allergy attacks). “I asked the secretary what kind of doctor specializes in lumps. She said an internist and gave me your name.”

“You certainly are lucky,” Aaron says. “Not only am I an internist, but this office’s specialty is hematology.” (He does not mention that the office’s other specialty is oncology—the treatment of cancer.)

We are now inside the examination room and he says, “Take off your clothes and I’ll be right back.”

“What’s hematology?”

He stops moving and answers. “It deals with disorders of the blood. It means, you might say, that lumps are our bag.”

What he says frightens me. Instead of asking the obvious—”Do I have a disorder of the blood?”—I revert to worrying about money. Telling him of my concern I say, “Tests are expensive and I’m short of funds right now. Can you go easy on the tests?”

Abruptly, he places his right arm against the door, as if to stop himself from exiting. Turning toward me, he seems suddenly angry as he says, “Nobody’s going to tell me how to practice medicine. If I order tests, it’s because I think they’re necessary. I’m a doctor and my concern is your health. I don’t give a damn about the money. If you can’t afford it, then you can’t afford it. We’ll work something out. You’ll pay me if you can, and if you can’t then you can’t. Money is the last thing we need to worry about now. I’m not going to let you tie my hands by telling me not to order the tests I need to practice quality medicine.”

After I take off my clothes, he feels the lump under my right arm, asking whether it hurts as he touches it. It doesn’t hurt. Kneading my skin with his fingertips, he feels for lumps under my left arm, under my ears and behind my neck, across my abdomen, and at my groin. There aren’t any other lumps.

He asks, “Do you have sudden chills or wake up sweating in the middle of the night?

“Have you been running a fever?

“Do you have sudden outbreaks of itching?

“Have you recently experienced sudden and unexplained weight loss?

“Do you suffer from loss of appetite?”

I answer no to all the questions, and when they stop, I say, “Why are you asking me this? What’s wrong with me?”

He says, “I don’t know that anything’s wrong with you. Go to the lab around the corner—he points the way—”and they’ll take some blood. The nurse there will direct you to the X-ray room. After you’re done with the chest X ray, get dressed and return to my office. Then, we’ll talk.”

If there were more room in the office, he’d probably pace, trying to figure out some way of saying what he wants to say without frightening me. Instead, he leans awkwardly against a bookshelf and, in a rush to get it over with, blurts out, “Look, I don’t know what the lump is. It’s probably nothing, but I don’t know. I think it’s a good idea for you to see a surgeon so he can remove the lump from your arm and we can examine it and find out what it is.” He is trying hard to convey as much information as possible, so I can understand his perspective and make a rational decision. He smiles abruptly, as if to apologize for what he’s just told me, and asks, “Are you willing to see a surgeon?”

“I guess so.”

“Can you do it right now?”

“Yes.”

He gets on the phone and calls a surgeon named Cory Simpson and inquires whether he can see me right away. He can. Aaron says about me, “Yes, he’s perfectly capable of walking over. In fact, I’ll tell him to run over. He’ll be there in a few minutes.”

Aaron gives me Simpson’s address, which is about five blocks away. He says, “Look, it’s Friday afternoon and you’re lucky that Dr. Simpson can see you right now. I want him to have a look at your arm. Then come back here so we can talk.”

As I leave his office, he calls after me. “Hey, there’s nothing to worry about. I don’t want you to be alarmed. It’s best to do these things quickly, just to be on the safe side.”

As I am crossing L Street and New Hampshire Avenue, it does not occur to me to question why I am listening to this doctor’s urgent instructions or why I trust him. I am puzzled because never before has a physician taken my physical ailments quite this seriously. Fear is creeping up on me, fear because the doctor has asked me specific questions and because it seems that I have a specific disease; fear because he says he specializes in disorders of the blood and by implication that’s what I may have; fear because I am en route to a surgeon. I have never had an operation, and I’m a coward when it comes to pain. Fear because a doctor thinks that an operation is necessary at all. But I don’t actually feel frightened yet. I can tell that the fear is coming, but am able to put it off, not wanting to be afraid, too busy concentrating on getting to Simpson’s office and on obtaining as quickly as possible a new range of information that I’ll need to deal with this situation. I know that I’ll be frightened later, but for the moment my curiosity is stronger than the fear. I consciously decide—like Spock in “Star Trek”—to banish my emotions and concentrate on being logical.

I arrive at Dr. Simpson’s office and am filling out the insurance form when the doctor comes out. “Are you Mr. Solkoff?” Pointing to the insurance form, he says, “You can do that later. Why don’t you come into my office?”

Simpson is also not much older than I. He is tall, thin, and wears a tapered three-piece designer suit. Among George Washington University medical students, who are notoriously hard on their instructors, he has a reputation for being a very fast and very good surgeon.

Right away, I find him to be unpretentious and easy to understand. He feels the lump under my arm and says that he doesn’t think there will be any problem removing it. He reassures me that the operation won’t be painful (which I don’t believe), that I’ll be awake while he does it, and that I can return to work right away.

I say, “What’s the rush? Why did Dr. Falk tell me to run over here?”

“Aaron has a tendency to be enthusiastic. He probably thinks it’s a good idea to find out quickly what that ‘lump,’ as you call it, really is.”

“What do you think it is?”

“I don’t know. You’ll have to ask Aaron.”

SIMPSON’S ATTITUDE toward me, from the beginning, was matter-of-fact. Later, he told me, “In reality, as a surgeon I was actually put in the position of being just a technician. I was not making major decisions regarding your care. The major decisions were really made by Dr. Falk—and you, of course.” He explained that surgeons, like anyone else, would prefer to be creative and in a position of authority.

Instead, as often happens, he was asked to do a routine task which he had done hundreds of times before. He was perfectly willing to explain the procedure to me and consistently answered every question asked about surgery and possible complications. However, regarding speculations on my diagnosis and life chances he continually referred me back to Aaron, whom he regarded as my primary physician. Whenever I asked whether he thought a procedure Aaron recommended was necessary, he said yes, telling me that Aaron was a respected physician who specialized in conditions like mine and whose judgment was trustworthy.

Eventually Simpson told me, “You and I are relatively close in age, and since I could avoid thinking about your dying, I did.”

Simpson and I never became friends, as opposed to my relationship with Aaron. I still don’t know Simpson well, and I doubt that many people do. Yet I respected him. He was easy to be with during painful and stressful situations. Like Aaron, he has an off-beat sense of humor, which we shared and enjoyed, and while there was nothing memorable about our jokes and bantering, it made future events easier that we all “horsed around” (as Aaron put it), often in a self-deprecating way. Given the closeness in our ages, none of us took offense or felt threatened when I complained about Simpson’s sutures or Aaron’s plans for treatment or when they complained about my behavior. Had they been much older, or had I been much older, my relationship with my doctors would have been more decorous—making the whole experience grimmer.

BACK AT AARON’S OFFICE, I ask what he thinks the lump is. He says, “It may be nothing at all, just some fatty tissue.” “But you think it’s something else?”

“I don’t think it’s something else. I don’t know what it is. That’s why I want to find out.”

“What else might it be?”

“It’s probably a benign tumor.”

I am frightened by the word tumor. Having assumed that I’d never have to deal with a tumor, each time the word appears in conversation I tune it out. “If it’s benign, why is it swollen?” I ask Aaron.

“All tumors are enlargements, abnormal growths. Most just happen, for reasons which are complicated and about which we’re not entirely sure.

Most tumors are benign, which means they’re not serious, and when we remove them, there’s nothing to worry about. The chances are that yours is benign and that when Dr. Simpson removes it, you and I will be done and you can go about your business.”

“And if it’s a serious tumor?” I don’t want to say the word cancer.

“I don’t think it’s serious, but if it is, then we’ll cross that bridge when we come to it.”

We talk about scheduling for the operation. He wants the tumor out of me as quickly as possible. I realize that walking around worrying that I have “something serious” when I probably don’t is stupid, and the sooner I know the better. But I don’t want someone else or something else controlling my life. I have an article to complete on Cesar Chavez, which Marty Peretz, the owner of The New Republic, commissioned and is expecting. Already, I am beginning the process of negotiating, trying to fit the problem of my tumor into my schedule. Aaron says firmly, “Don’t wait too long. This is something that should be taken care of right away.” I promise to call Simpson’s office and schedule an appointment.


 * While all characters in this book are real, several names have been changed.

This material is copyrighted © 2013 by Joel Solkoff. All rights reserved.

[Reminder, to read the rest of the book, please click this link: http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/]

learning-to-live-again-triumph1

 

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Here is Tim McGraw singing on just this very subject.

He said 
I was in my early forties 
With a lot of life before me 
And a moment came that stopped me on a dime 
I spent most of the next days 
Looking at the x-rays 
Talkin’ ’bout the options 
And talkin’ ’bout sweet time” 

I asked him
“When it sank in
That this might really be the real end
How’s it hit you
When you get that kind of news?
Man, what’d you do?”

He said
“I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fu Manchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying”
And he said
“Someday I hope you get the chance
To live like you were dying”

He said
“I was finally the husband
That most of the time I wasn’t
And I became a friend a friend would like to have
And all of a sudden going fishin’
Wasn’t such an imposition
And I went three times that year I lost my dad
I finally read the Good Book, and I
Took a good, long, hard look
At what I’d do if I could do it all again…

And he said

“Someday I hope you get the chance

To live like you were dying

Like tomorrow was a gift

And you’ve got eternity
To think about
What you’d do with it
What could you do with it
What did I do with it?
What would I do with it?

 

How do I feel?

I do not feel real. There is a disconnect between my body, which does not feel good, and my mind, which does not feel good.

It is six in the morning. I am listening to Chopin’s Nocturnes; I am beginning to be not unhappy, but capable of realizing happiness will come.

My body feels as if it were hit by a Mack Truck—a brand new red truck exactly like the one friend Philip Moery and I saw just as it was driving off the assembly line lot–packing tons of raw power, initially a frightful yet beautiful sight.

All right, maybe the truck that hit me wasn’t red, but it still hurts.

Everything hurts.

++++

Amelia_Russo Office

++++

The fact that everything hurts is mitigated by the fact that I am no longer in excruciating pain the way I was two weeks ago.

The pills helped but not enough.

I took more pills and they did not help enough.

The pills caused my gastrointestinal system to go on strike—descriptions I will spare you.

++++

Yes, I realized my life had been saved as a consequence of the successful operation that not-so-appreciatively was making me wonder at my sanity to willingly submit to the aftermath of this surgery. Grappling two contradictory thoughts in my medicated head: The first was: I am glad to be alive. The second: I wish I were dead.

The glad to be alive prevailed throughout but sometimes only by a hair.

++++

Now, I am back at State College PA where I live. When I was in New York thinking about State College, I was in dread. The number of procedures required to get from there to here seemed overwhelming. Who, I wondered, was going to take apart my rear wheel drive scooter, my travel scooter, and my wheelchair and put them in the car?

At every step [sic] of the way, there were how-to-get-home questions ultimately only I could answer.

Dewy-eyed optimists might say that my problem solving was commendable because it was helping me reach my goal of saving my life.

Devastated, late in August, the problem-solving took on a distinctly unhappy feel. The problems had to be solved. I did not want to solve them. I had no choice.

++++

Upon arriving at State College, I was so relieved to be home. I had worried that everything with be dirty and a mess (on target), but it did not matter.

I no longer needed to receive permission to go to the bathroom and follow the American Cancer Society’s Hope Lodge rules requiring that I not bring my coffee from the common kitchen to my room.

Now, I can drink coffee as I type this and go to the bathroom without the nurse’s saying, “No.” No nurse. No No. Alone at last.

++++

Who am I alone? I am a 65 year old paraplegic (an active paraplegic) recovering from major surgery. It will take me two weeks more to recover to the point where I feel alive, an explication I will reserve.

I do not want to see other people. Slowly, I am emerging from this hermitage—going across the street for a quick Mediterranean plate with extra baba ganoush, inviting my friends to see me one-on-one and for a limited time only.

My body is not working well but is getting better. The key barometer to my well-being is the ability to transfer. Before surgery, I leapt out of bed and onto the wheelchair effortlessly.

Now, getting to the wheel chair is harder.

I do not fall.

I am weak.

While I am getting stronger, I really do not want to be outside home much until I master this key factor in being able to take care of myself, viz. transferring as effortlessly as before August 8.

It is happening.

++++

In some ways, I am surprisingly patient with myself.

Take for instance transferring from bed to wheelchair.

I methodically bend down and double check the wheelchair is locked in place.

When I put my left foot on the floor, preparing to swivel into the wheelchair seat, I check and double-check every move.

The consequences of falling; indeed, of falling frequently, is straight to the nursing home—the county home called Centre Crest; I do NOT want to go there.

Part of me is mindful of consequences.

++++

Before I discuss my emotions, which is the primary cause of my writing this posting:

The rank of football-rally-style cancer optimists is distressingly high.

Two apartment buildings where cancer patients recover or die are named Hope Lodge and Miracle House. I would prefer to have my conversations about hope and miracles with God and not  rely on some seemingly uplifting name to keep my spirits up.

This may be one of many unfair observations, which I will not spare you now or later.

Hope Lodge is run by the American Cancer Society and through its generosity provided my caregiver younger daughter Amelia had a place to stay when I was in the hospital and where she could be next to me when I returned to recover.

Hope confronting me everywhere….

One consequence of cancer survivor ebullience is the: Make every day count mantra.

The first every day I was somewhat functional upon my return, I had to fill out overdue forms–lots of forms from trying to obtain money to ensuring my continued employment.

Forms. Forms. Form

Every day I filled out forms I asked myself, not entirely ironically, whether I had survived cancer to fill out forms.

Yes, I realize that after I fill out enough forms, I can scoot to the florist on Allen Street and smell the yellow roses.

Inhale.

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I wrote a book about the importance of emotions while surviving cancerhttp://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/

I know something about the subject.

This time, I prepared to protect myself emotionally and to provide my caregiver(s) with relief, orchestrating pleasant things to do.

Elsewhere, I may detail the preparations. Right now, trust me. I worked long and hard on emotional preparation.

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The big surprise to me is that I went crazy after the operation rather than before.

The craziness took the form my issuing barking mean and aggressive orders at my two caregivers, my daughter Amelia and my sister Sarah. I was polite to strangers.

The craziness reminded me of the time 20 years ago at the advice of the Chair of the Oncology and Chair of the Neurology Departments at the Chapel Hill Hospital for the University of North Carolina.

United in their decision both Chairs decided to put me on high doses of steroids to see whether they might restore my ability to walk. They did not think it would work and said so. However, steroids were the “miracle drug of the 1950s” and sometimes steroids have unanticipated positive consequences, so: “Why not? We have nothing to lose?”

Except my mind. I found myself saying terrible and abusive things—words I did not mean and knew I did not mean even before they formed on my lips, but words I was powerless not to utter because THE DRUG MADE ME DO IT.

Last week, I asked a secretary at the Department of Architectural Engineering whether she had a similar experience. “Yes, when my kids were born. I said awful things to my husband. Awful awful things.”

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Sarah_close

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The craziness appeared in the middle of the night as I was lying in my hospital bed, coughed, and my body felt as if it were split in two.

The craziness appeared as a wave—a fluctuating wave increasing in intensity until it reached a high and unpleasant peak before returning me two days later to reality shaken, not quite mindful of what I had said except that it was THE WRONG THING TO SAY.

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My sister Sarah told me on the phone on Thursday her feelings about me when I was crazy. “I knew that you were suffering. Yet you were mean and impossible to be around. I decided I never wanted to see you anytime again soon. If I saw you at your funeral, it would be too soon.”

Daughter Amelia asked: “Why were you so mean to me?”

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The expression I am in the dog house comes to mind.

  • I was crazy.
  • I was out of my mind.
  • I did not realize what I was saying when I said it and I did not mean what I said.
  • I had been through extraordinary pressure.
  • I went out of my mind.

My mind has returned.

Forgive me.

I am the brother and father you love.

Remember me?

FrankSinatra

–Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.

The danger of “living wills”–a post surgical analysis

Of all my many preparations for surgery–including signing up for Premium Spotify [worth it]–creating a valid Living Will exercised far too much time.

I can and may list the valid rationale for having a Living Will, which here in Pennsylvania is called officially a Durable Power of Attorney.

Durable means (as lovers of the English language are encouraged to deplore) limited.

The person selected to execute my living will can only take care of my health care decisions–decisions I have listed in advance (see below) and which She, as it turns out, may only make following my explicit instructions (see below) and is not allowed to vary from my instructions at all.

My agent does not have authority to act for me for any other purpose unrelated to my health care. All of my agent’s actions under this power during any period when I am unable to make or communicate health care decisions have the same effect on my heirs, devisees and personal representatives as if I were competent and acting for myself.

To tell the truth, I would much rather watch a Shania Twain video than go through the gut-wrenching process of picking the person who will turn off the plug if I emerge from surgery a rutabaga.

Here is the video I would rather see than execute a Living Will.

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The problem with going into surgery which I knew would be successful (and indeed the surgery was successful) was encountering flak from a variety of sources.

One of these sources was my elder daughter  Joanna, who has two honor degrees in nursing and is convinced–perhaps rightly so–that she knows everything.

Joanna insisted that she be the one to pull the plug.

photo 2

In April I had had the foresight to executed a previous Living Will at my hospital bed, but once out of bed and back and forth to New York for reasons I will not explain (or may) I had to change the document.

For one thing, the April Living Will made the assumption that it was unfair to ask my daughters to perform such a task; my friends would spare them the guilt of pulling the plug. This assumption was wrong and in a way I cannot quite describe demeaning to them.

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In preparing for August surgery at Memorial Sloan-Kettering with the Living Will, I thought I was just going through the motions.

Then. Joanna said, “[Expletive deleted] I am a nurse. If anyone should pull the plug it should be me. Anyway, I would not be pulling the plug. I would be telling someone else to pull the plug.”

Meanwhile, my friend Pinhas had complained that in April he had been made second in line to pull the plug and wanted to be first; plus, my April number one batter up was afraid she did not have the medical knowledge.

Finally, Memorial Sloan-Kettering Cancer Center required (actually requested–it is optional) an updated Living Will plus other relevant documentation I will bother you with.

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My wishes. Clearly, some of my wishes did not matter at all. Others did, but not now–meaning not before August 8th and my kidney operation.

The primary reason I was filling out a Living Will was because I wanted to please the Administrators at the hospital where I was about to have surgery. If they saw that I was a responsible enough citizen to fill out the expletive deleted form, they would decide I was a right guy, guaranteeing some slack later when I behaved poorly–as I did.

I really and truly did not want anyone to take the document seriously. It was one of a list of items on my clipboard, the least important, and one that took up attention from more important things (which I will list for you eventually, but can be summed up with this video from Bessie Smith) :

Here is a salient excerpt from the Pennsylvania Living Will form, which is a lot simpler to fill out than you might expect:

I direct that my health care providers and others involved in my care provide, withhold, or withdraw treatment in accordance with my directions below:

  1. If I have an incurable and irreversible (terminal) condition that will result in my death within a relatively short time, I direct that:
    • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
    • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
    • I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 
  1. If I am diagnosed as being in an irreversible coma and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:
    • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
    • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
    • I not be provided any comfort, care and relief from pain , including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 
  1. If I am diagnosed as being in a persistent vegetative state and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:
    • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
    • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
    • I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 

Regarding item 1, I answered: “I be removed from any artificial life support or any additional life-prolonging treatment

Item 2, I answered: “I not be artificially administered food and water, realizing this may hasten my death.”

Item 3. I answered: “I be removed from any artificial life support or any additional life-prolonging treatment.”

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Time for another video:

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The PA Living Will form states what I told the form I wanted. Period. See:

“My agent’s powers include, but are not limited to:

“Full power to consent, refuse consent, or withdraw consent to all medical, surgical, hospital and related health care treatments and procedures on my behalf, according to my wishes as stated in this document…”

Other language makes clear: My Agent has no choice but to pull the plug because that is my wish as stated in this document.

The fact that none of my would be agents realized that they had no power at all to effect my major decisions was of no concern to them. What was of concern to them was my welfare. They love me. They want what is best for me. Instead, I had to spend time explaining this expletive deleted stuff to them and the more I explained the more frightened  they became until, naturally, a discussion began about my funeral. [I do not want a funeral; I want a Democrat elected governor of Pennsylvania next year.]

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Perhaps a photograph unrelated to anything might prove useful here:

fish

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Naturally, the situation became complicated. Naturally, for me. Naturally, for the situation.

I was preparing for an operation in New York on August 8th. Why was I worrying about a durable power of attorney in Pennsylvania when the operation was happening in New York AND Memorial Sloan Kettering requested I provide a valid New York State form?

Not the same form, of course. That would be too easy. The New York State form is entitled, “A Health Care Proxy.” The proxy delegates someone to be my health care agent: “In the event I have been been determined to be incapable of providing informed consent for medical treatment and surgical diagnostic procedures.”

Enter a useful attorney whom we will call Hadley V. Baxendale, a moniker he likes. Hadley had three recommendations:

1. Since I live in Pennsylvania and have been hospitalized several times in this Commonwealth, a valid PA Living Will is a good idea.

2. The New York form is limited in stating explicitly the powers an agent can have. Link the two documents for New York so the New York agent is required to follow the more detailed directives in the PA form–having the two notarized together which I did at the American Cancer Society’s Hope Lodge where I temporarily stayed before and after the surgery. I handed that two-in one document in on Surgery Day to someone entirely covered in white who said, “Thank you. I will put it in your folder.”

3. Hadley said, “There is room in the PA form for additional instructions. Let me begin by asking you the following questions.” I minded answering each question. The Aristotelian/Talmudic logic behind legal–especially good legal–thinking drives me crazy. So, I had to answer how much of a vegetable I was willing to be before I was willing to have someone pull the plug. What percentage of postoperative disability I was willing to take. And other tranquil questions designed to put me in the mood for surgery.

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Time for another song.

http://youtu.be/QwIYrx6Bqe0

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The upshot was that because they were actually present and available my younger daughter Amelia and my sister Sarah Schmerler were designated NY Health Care Agents for me.

Amelia first. Sarah if Amelia were unavailable.

Both spent my operation time weeping at the old Whitney Museum just before Renzo Piano creates his magic and builds a New Piano Whitney. I have seen a photograph of the two together waiting in front of a sign explaining Piano’s future vision, but can not find the photo. Alas.

This is unfortunate because I could then explain that while each were waiting with their iPhone ringers on in case a major medical decision was required in their capacity as my Agents, Dr. Russo figured out how to close the wound all by himself.

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One more song and then a conclusion (I hope). Brief (I hope).

http://youtu.be/uOQwdRMTKEk

 Certainly, having a Living Will is an excellent idea. It is not an excellent idea when you are going into the hospital and have an excellent chance of survival. Then, having intense discussions about your wishes if you are incapacitated beyond redemption takes on an unfortunate side trip past where you want to be and what you want to talk about with your loved ones.

Here is a photo of my sister Sarah getting in shape to be my alternate Health Proxy. Did the enormous time involved in, for example, notarizing the Pennsylvania document in PA and two days later notarizing the New York document (with notarized PA) document attached and also notarized–gathering two witnesses each time. My appreciation to my Rep. in the Pennsylvania House Scott Conklin for making his office available for that purpose. [The Democrats could win the governorship with the right team. Conklin ran for lieutenant governor in the last election and lost. I hoping that he will run as a running mate with Allyson Schwartz and win.] {Whoops. I got off subject.}

A non-partisan thanks to Lorrainne Katt, Manager of the American Cancer Society’s Hope Lodge where I lived with Amelia, my daughter, as my caregiver. Lorraine in short order assembled a notary, another witness and signed the document herself.

sarahclimbs

This is Amelia several months ago drinking happily in Spain.

Ameliadrinks

Amelia arrived in New York on Monday evening in time for the rules instruction at Hope Lodge where she took up residence as my health care provider that evening. The next day we…The following day, a meeting with Dr. Paul Russo, my surgeon, a wonderful physical therapist, and an intense examination to make sure I would not die under the knife–intense.

Then…Thursday brought the surgery. Would never have discussing all the paperwork have helped me through time that followed the operation. Absolutely.

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Another unrelated photo courtesy of the Morgan Library and Museum:

Mozart

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A man’s gotta do what a man’s got to do.

I am thinking of me in this role. Filling out a Living Will is certainly a grown up thing to do. It is not a good idea to leave family and loved ones guessing about one’s intentions. The best way to do it is when there are no health issues involved. At nearly 66 years old, I should have been grown up enough to fill out the farm during a pacific time when asking family and loved members their thoughts did not bring out the intense emotion this exercise did.

Perhaps, the lesson of the angst of the Living Will taught me how to be a grown up. Perhaps.

–Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.

Before Arlo Guthrie sings all the words to Alice’s Restaurant, I would like to thank Law Depot www,lawdepot.com This online service provides forms that fit the requirements of the PA Living Will form and NY’s Health Care Agent form. Each can be easily modified or modified only to include names and addresses. A great service.

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Cancer Surgery Whirlwind

RenameFlight-to_freedom

August first through 18th

The surgery was successful. Dr. Paul Russo removed the cancerous tumor that surrounded my right kidney. The removal kept the tumor intact so it did not spread cancer.

About a third of my right kidney was removed because it had been damaged by the tumor. This process, called a partial nephrectomy, is very good news.

It means over 60 percent of my right kidney has been saved while at the same time removing the threat of cancer. (If I were paid by the word, I could go on and on.)

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The photograph above shows my first view of Freedom, discharge from the Hospital. I was discharged Monday, August 19th, escorted by Torrance, an orderly of enormous insight, to the blue van. The van goes from Memorial Sloan Kettering Hospital at York Avenue and 83rd  Street to the American Cancer Society’s Hope Lodge. Almost home I almost prayed as I took this photograph en route home.

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What was not successful was my good behavior. The combination of this hectic journey from State College PA 250 miles from New York City combined with fear, relief, and the stress of major surgery adversely affected my behavior and caused me to behave atrociously. The key concept here is that it is not enough to survive cancer. Returning to life as usual can be a distressing experience.

Readers may wish to return to this site for photographs, video, more words and a song when the limitations of my posting by iPhone are replaced by a computer with a screen (currently on the floor of my room at the American Cancer Society’s Hope Lodge).

For an earlier account of previous poor behavior while being cured of a different kind of cancer, you may wish to read Learning to Live Again available here. http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/

— Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.