We were sitting at an upscale bar in Richmond waiting for me to appear on the evening news. NBC. My book Learning to Live Again had just been published. It was a hot summer. Diana, my lover for three years and wife for two, and I had more than survived marriage. Would we survive the autobiographic book I had just published in 1983 describing a previous romance to Laura, the woman whose love made it possible to get through my first experience with cancer?
My egregious violation of the rules of gentlemanly behavior would never have happened if I were not a writer continually hell bent on publication regardless of the consequences. Thomas Wolfe had written Look Homeward, Angel unwilling/unable to keep the autobiography from his novel’s pages–revealing the secrets of his Ashville, North Carolina home town. In the process, he made it impossible to go home again. Later, Wolfe claimed all novels are autobiographical saying even Gulliver’s Travels was autobiography.
I made no pretense of hiding behind a novel. My chance at becoming a full-time writer of books was this one published by Holt Rinehart & Winston. It had been based on a New York Times Magazine article that had resulted in my appearing with great fanfare on Good Morning America. It was not impossible–nor a forgone conclusion either. As my friend Bill Gahr (and my boss at the General Accounting Office) had said, “When you have a chance at the brass ring, you go for it.” If Learning to Live Again succeeded, I could fulfill the dream of writing books for the rest of my life. This was my big chance.
Richmond television initially was the best I could do on the road for hopeful success. Diana had spent much of our years together watching me write and rewrite expressing the belief her love for me was so great eventually my passion for another woman would be transmuted by her love for me. Thus far her belief seemed to be working. We were happily married. Through the day of press, radio, and television interviews Diana was by my side supporting me totally.
Then the human interest clip at the end of the evening news appeared. The story line went on about the fear of surviving cancer and how a woman’s love had helped me through it. Neither Diana nor I had realized the interview, filmed in a park, had included (after we thought it over) a shot of Diana and me romantically holding hands as we crossed a bucolic bridge. Yet there it was.
Diana and I were sitting at the bar. Several others were also watching the news. The cameraman was not as expert as one might hope. The clip ended as Diana and I holding hands suddenly disappearing as if Merlon, the magician, had said Poof. “Where’d they go?” some of drinkers asked each other who were as puzzled as we.
Diana is a proud woman. Mixing our romance with another was a bridge too far. Never again did she appear with me as I hustled the book. Was this a defining moment? It did not seem so at the time.
The book received good reviews but did not earn enough to repay the advance. I published another book. This time on agriculture policy. One does not receive the kind of advances required to pay the mortgage and support children from a book on agriculture policy. Instead, I had to return to speech writing and then become a technical writer.
As for our relationship, did it matter? We did have two children and remained together as a couple for twenty years. Much of the time a happy time. Did Richmond matter?
Dr. 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):
Paraplegia and the recollection of previous cancers
The last part of cancer therapy
This I believe
Make haste slowlyis the motto.
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.
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.
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.’”
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.
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.
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.
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.
“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.”
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.
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.
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.
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.
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.
Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York
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
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?”
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.
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 am alive for a purpose.
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.
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.
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.
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.
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.
8. Self reliance should be encouraged. Shown here
[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]
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:
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.
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.
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?”
“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.”
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?”
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.
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?”
“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”
“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?
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.”
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.”
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.
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.]
Solkoff is diagnosed as having Hodgkin’s disease, a type of cancer. He fears the disease and the possibility of death.
He undergoes radiation treatment to eradicate the cancer, “Radiation treatment was the worst experience of my life”: he loses his appetite and his energy, and he becomes depressed. He feels humiliation, anger, and misery.
Written with honesty and feeling, Learning To Live Again is a story of remarkable courage in the face of disease.
Highly recommended for public library collections.
–Marliss H Hooker, Univ. of Connecticut Health Ctr. Lib., Farmington. June 1, 1983