Tag Archives: Al Thieme

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.

 

Getting to my kidney operation on August 8th—Part 1

Getting out of bed (and eventually into an automobile)

To travel the 257 miles from State College, PA to Memorial Sloan Kettering Cancer Center (known to New Yorkers as Memorial) less than two blocks from the East River in New York City, I have to get out of bed.

What follows is a photographic recreation of my getting out of bed on June first, for my most recent expedition to Memorial where I went for tests and more tests and the surprising news that Dr. Paul Russo had decided an operation would be a good idea.

The decision was a surprise because it was in effect a reversal of his position in April. The reversal can be explained, I suppose, because in June Dr. Russo had the opportunity to review extremely detailed sonic imaging of my kidney and heart:

  • The kidneys to see whether he could remove the tumor and save two-thirds of the kidney and not incidentally remove the threat that I will die of kidney cancer
  • The heart to determine whether I would survive the operation and recover
  • Keep in mind: Cure the cancer; kill the patient is not a good idea

Here I am in bed.

Photograph by Benjamin Carlson
Photograph by Benjamin Carlsen

Because I am a paraplegic, getting out of bed requires some effort. Paraplegic, the dictionary explains, is an individual who has “paralysis of the lower half of the body with involvement of both legs.”

I cannot stand without holding on to something. That does not mean I cannot dance, if I am careful and have a partner who understands, I CAN dance.

I cannot walk, but there are a wide variety of devices that can help me get from here to there.

Plus, my feet work well enough that I can drive a car.

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To get out of bed, I need to transfer to a mobility device.

The following photograph shows me transferring from the bed to a scooter. First invented in 1968 by my friend Al Thieme, CEO of Amigo Mobility, the device is formally called a Power Operated Vehicle (POV) scooter.

Photograph by Benjamin Carlsen

 

Photograph by Benjamin Carlsen

In the following photograph, the transfer is complete and I am now ready to:

  • drive to the bathroom
  • the kitchen to make breakfast
  • to various parts of my apartment to get dressed and pack for the trip to New York

It is essential to keep the battery charger in mind at all times and to make sure it is positioned in the right place. Before going to sleep, have a plugged in battery charger with a fan inside sitting on the bed table preparing for the period after sleep. Hearing the hum of the fan reassures that the charger plugged in next to my bed will provide me in the morning 25 miles worth of power–25 miles (to repeat) for one full charge.

Photograph by Benjamin Carlsen
Photograph by Benjamin Carlsen

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Finally, after considerable effort and stops for this and that (including, of course, getting lost), here is a photograph I took of myself driving a mini-van through the streets of New York City in June—the scooter having been taken apart and put in the rear. As one born and college educated in New York, I like the thrill of driving in insane cross-town traffic where there are no rules of the road except aggression. This is what it is like to be en route to appointments to test my kidney and heart and to learn of the operation I had not anticipated.

Joel Solkof was at a complete stop in the MIDDLE of a crosswalk (where sang froid pedestrians pushing baby strollers had to climb over cars) when he took this photograph.
Joel Solkof was at a complete stop in the MIDDLE of a crosswalk (where sang froid pedestrians pushing baby strollers had to climb over cars) when he took this photograph.

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Today is Monday, July 8th. I am in State College planning the logistics of getting to New York for the operation in August at a hospital in New York City where the word MEMORIAL is chiseled ghoulishly in large stone letters above the entrance.

Now I am planning and planning– wondering which of my disability devices to take with me. I am planning on how to position my mobility devices in New York so they are there when I need them:

  • before the surgeon cuts
  • in the hospital immediately after the operation
  • wherever I will be staying in New York for the two-week recovery period

–Joel Solkoff

Fashion note: The beautiful 100% cotton yellow pajamas I am wearing in bed are part of a generous sartorial gift from the family of the late David Forer, a man of impeccable taste.

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Copyright © 2013 by Joel Solkoff. All rights reserved.

This posting is a portion of the fifth part of the ongoing story of my third cancer–kidney cancer, a story that follows this expanding outline:

1. http://www.joelsolkoff.com/who-i-used-to-be/

2. http://www.joelsolkoff.com/my-personal-experience-with-cancer-cancer-iii-ii-i/

3. http://www.joelsolkoff.com/my-fear-of-the-future/

4. http://www.joelsolkoff.com/my-man-mozart/

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Disability Cancer Surgery Donation

In 30 days (the actual date is Thursday, August 8th), I am scheduled for major surgery at Memorial Sloan Kettering Cancer Center (MSKCC). The surgery will be performed by an expert in the field of kidney surgery which my physician here in State College (250 miles from New York City) advises me cannot be reliably perfumed in the greater region where I live. My State College urologist referred me to Sloan Kettering in New York where Dr. Paul Russo will perform the surgery. The surgery, if successful. and it is highly likely to be, will remove the large tumor that surrounds my right kidney. The surgery will also remove one-third of my right kidney–in effect saving the kidney. Since imaging indicates the cancer has not spread, the operation is likely to eliminate the threat of my dying of kidney disease. Period. That is a big load off my mind. I hope you are able to donate money to help defray the travel expenses to surgery and during the two-week estimated recovery period.and of course the journey back home. My estimate is that $3,000 would be amount required and when I achieve that amount I will tell you and take down the donation button. Begging for money is difficult enough. Begging for money after I have raised the requested amount is tasteless.

My personal experience with cancer—Cancer III, II, I

New York, New York, Saturday, April 13, 2013: My third cancer is new. It did not present itself as a suspicious sign the way the lump (tumor) did under my right arm leading to a diagnosis of Hodgkin’s disease followed by major surgery and two rounds of radiation treatment when I was 28 years old. I am now 65.

My first cancer

The radiation did not prevent me from fathering a daughter Joanna (who graduates from nursing school next month and marries in October).

My second cancer

Then, 13 years later, an unpleasant surprise. A lump (tumor) appeared in my groin. My orthodox Jewish oncologist said, “It is a sheylah [a Talmudic term meaning a question which does not have an answer] whether this is a new case of Hodgkin’s disease or the return of the old one.”

Out of hubris, I had published an article in The New York Times under the title Learning to Live Again boasting of my cure, a boast to be repeated on ABC’s Good Morning America after an impressive limousine ride to the studio followed by a book with the same title (available on this site http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/) with the subtitle, My Triumph Over Cancer.

Now, with the arrival of my third cancer, Joanna expresses a familiar refrain over the phone from North Carolina, “Everyone knows nothing can kill you, Dad.” Then, she says, “Learning to live again and again and again.”

Amelia (whom I fathered after my cancer at age 42), who is teaching English in rural Spain, continues the theme calling on Skype (revealing her hair is growing long): “And again and again.”

As directed, finding an expert on Cancer III

So, here I am in New York City, a week and a day after I was diagnosed with renal cancer. My urologist had opened her laptop with the CAT-scan showing a very large tumor surrounding my right kidney.

The vividness of the image is startling—large tumor, large large tumor.

Will it kill me?

Can I avoid death?

The answer appears with an insistence:

I am told that I must find a surgeon better than any surgeon in town [i.e. State College]—the kind of skilled surgeon available at Pittsburgh or Philadelphia, only Pennsylvania has a limited number of surgeons of that caliber and finding one able to operate in April is unlikely.

I must go out of state—have an operation in 30 days or else the cancer from the large tumor wilI spread and kill me.

Run don’t walk to the best surgeon who can operate.

That’s the advice I follow.

Diagnosis on Friday at 4 pm.

I am on the phone on Monday to Memorial Sloan Kettering Cancer Center.

Yesterday (yesterday) I consulted at my urologist’s suggestion (yesterday) with Paul Russo a surgeon specializing in kidneys and cancer at Memorial Sloan Kettering Cancer Center (MSKCC). As he puts it, “I am a kidney surgeon warlord.”

A digression on traveling to NY by bus

It is worth pointing out—before getting to what the Kidney Warlord said—that getting from State College, PA to New York City is not easy for me. I cannot walk. The cumulative radiation from Cancers I and II burned a hole in my spine making me a paraplegic.

I can stand but I have to hold onto something. I get around on a scooter—a power operated vehicle (POV) scooter invented by Al Thieme (CEO of Amigo Mobility) to help his wife who had multiple sclerosis.

The scooter I used for the trip is a lightweight travel scooter which means that it folds apart easily, has remarkable power—climbing easily Manhattan’s hills and steep (sometimes very steep with deep cracks in the payment) curb cuts– is relatively light weight and is narrow (the place at which I slept last night had narrow hallways).

My friend PH came by my State College apartment shortly before 9 AM Thursday to take me to the bus. Megabus runs a double-decker (reminiscent of the buses I used to ride as a child down Fifth Avenue).  One problem with being disabled and riding Megabus is that to secure officially sanctioned accommodations one has to call the special disability number which in my experience takes as long as an hour for a simple bus ride plus the information does not reach the bus driver and on and on.

This time I decided to follow the rules that if I am willing to store my wheelchair (or other vehicle) in the luggage compartment of the bus, then I do not have to call the Disability Office.

I brief PH on what to tell the driver (who fortunately does not freak out as others have done). He removes the lift from the closet next to the bathroom, hooks it on the bus floor (so it does not slip when a scooter or wheelchair goes up or down).

I drive up the lift, move from scooter to chair, and PH, who knows how to take the scooter apart does so after leaving me on the bus chair and going down the lift to the luggage area. PH explains how Frank will have to put the scooter together when we arrive in New York.

This detail should make it clear (repetition is bad writing but good pedagogy) that traveling is not easy for me. The desire to save my life (as I saw it) overcame obstacles including the reality that I could not walk to the bus’ bathroom and had to tax my bladder to the limit. Enough said.

Background on Kidney Warlord consultation

So, there we are at Memorial Sloan Kettering Cancer Center (MSKCC) having arrived through a cold rain early for a 10 AM appointment. Since its founding in 1884 as a New York hospital devoted to treating cancer patients, MSKCC has established itself as a world-famous research and treatment center benefiting from the funding cycle created by President Richard Nixon and Congress. Nixon (of whom I cannot resist making disparaging remarks)–in what the White House press office described as “a Christmas gift to the nation”– began the War on Cancer by signing the National Cancer Act in December of 1971.  [Expect a return to this subject.]

I keep mentioning Sloan Kettering (as if it were a mantra) because it is regarded as one of the most distinguished cancer centers in the world (which also means it has its critics [and I have the opportunity to repeat myself again]). The surgeon I was scheduled to see is a hot-shot by any standards and (sadly) I have experience with cancer hot shots (remind me to tell you about the time…).

Paul Russo is on the staff of Cornell’s College of Medicine as well as Sloan Kettering and is widely published—see PubMed [an online index of biomedical articles maintained by the U.S. National Library of Medicine and the National Institutes of Health] for a full listing of his journal articles. One article is entitled, “The Role of Surgery in the Management of Early-Stage Renal Cancer.”

The first sentence reads: “There were an estimated 58,240 new cases and 13,040 deaths from kidney cancer in the United States in 2010.”

Here is how Dr. Russo describes his work: “I am a urologic oncological surgeon known for my academic work in kidney tumor surgery. My expertise includes partial nephrectomy, removing only the tumor using small ‘miniflank’ incisions while preserving maximal kidney function, and cytoreductive radical nephrectomy for patients with advanced kidney cancers. I also lead a kidney tumor surgical research team at Memorial Sloan-Kettering that has created nomograms predicting survival and renal functional outcomes.”

If you want to see a YouTube on cancer surgery for kidneys, go to Dr. Russo’s link: http://www.mskcc.org/cancer-care/doctor/paul-russo

The Consultation

Dr. Russo’s office suggested that I invite someone to the appointment which is an excellent idea because there were moments when I did not really hear what the doctor said. My friend Kathy graciously agreed to attend and Dr. Russo spent a surprising amount of time talking to her, which made sense because I was annoyed by how the appointment began.

“Are you irritated at me?” he eventually asked. “Yes,” I answered.

This is what I want: I want you to operate on me immediately, confirm that losing a kidney does not matter, that recovery from the operation (as I have been led to believe) is minor, and a swift operation will cure me of renal cancer by eliminating the tumor before the cancer has a chance to spread.

Dr. Russo said that I may not be suitable candidate for surgery—especially since the surgery he would perform is MAJOR surgery. I may not be suitable because I had a heart attack and have a pacemaker and am a diabetic.

Dr. Russo said that there is increased evidence that individuals such as myself who have multiple health problems do not follow the preconceived view that one kidney is enough. Losing a kidney might cause me significant problems.

Dr. Russo said that he orders his patients to walk a mile on the first day of surgery and two miles on the second. Since I am a paraplegic, I cannot walk at all. Not being able to walk could lead to significant complications.

Dr. Russo said that there is no rush. The tumor surrounding my right kidney is very large and could have been growing for 20 years. It is a good sign that the tumor was found by chance rather than as a consequence of symptoms. Perhaps, the tumor will continue to grow slowly and without causing cancerous damage. The thing to do is proceed slowly, and cautiously.

On Monday morning [remember, today is Saturday], Dr. Russo scheduled me for cardiac tests. In a month I return to New York to see him.

My reaction

I have been staring off in the distance looking at nothing thinking no thoughts. This was true a week ago when I was diagnosed with renal cancer and urged to rush to cut it out and it is true today after being told to proceed slowly and perhaps not have the operation at all.

The advice to rush and cut out the cancer immediately was comforting in its way. Once again I would be doing something to save my life. Doing something is better, in my book, than doing nothing—than waiting and seeing.

As it turns out, I believe Dr. Russo. He has performed more kidney operations than are performed by most countries. He is rewarded by the hospital when he performs an operation—discouraging operations is not good for business or reputation (at least, in the conventional sense).

Dr. Russo has convinced me to rewrite my figurative book and acknowledge that doing nothing may be better than doing something. As I type this, I have difficulty believing what I am writing in large part because I really do not see myself as a 65 year-old man with health problems. I see myself on many days as 16 and on most good days as capable of doing anything. Anything.

I am not 28 anymore as when I was treated for Cancer I. The decisions I make for the future ought to be made carefully because a well-lived life (the kind of life I want to live) causes joy and adds to the productivity of the gross domestic product. [This ongoing story will continue.]

–30–

Copyright © 2013 by Joel Solkoff. All rights reserved.

This posting is the second part of the ongoing story of my third cancer–kidney cancer, a story that follows this expanding outline:

1. http://www.joelsolkoff.com/who-i-used-to-be/

2. http://www.joelsolkoff.com/my-personal-experience-with-cancer-cancer-iii-ii-i/  [You are here.]

3. http://www.joelsolkoff.com/my-fear-of-the-future/

4. http://www.joelsolkoff.com/my-man-mozart/