Susan's Blog

Please refer to the following for Susan's blog:

http://susanharrisnyc.blogspot.com

Thank you!

Post-Blog Observations

July 8, 2010

Thursday 1:25 PM

I wonder what motivates other people in situations like mine? The ability still to find meaning in life? Love of even the life of suffering to which they are now reduced? Fear of death? Fear of damnation if they hasten their demise, much less take their own lives? Familial and societal expectations? Inability to face reality? Inertia? Blindly following their doctors' latest protocols for them? Focusing on the trivial things they can still try to control?  

 

July 8, 2010

Thursday 5:08 PM

Since last Friday, when I had a Tenckhoff catheter installed, nine liters of fluid have been drained from my peritoneal cavity—currently at a rate of 0.5 liters three times a day. It is unclear whether my body is now generating more than 1.5 liters a day of this excess fluid. It is also unclear if it could be removed at a faster rate.

One limiting factor on the pace of drainage includes consequent drops in my blood pressure. The drainage sessions are also now triggering  migraine headaches.

 July 10, 2010

9:27 PM

The hospice workers who are helping take care of me assure me that it will be impossible for me to stand the pain that is in store for me if I won't take opiates. So I have agreed to a pilot program, which I commenced last night, in which I am taking a small amount of laxatives to try to counterbalance the constipating effect of a tiny amount of oxycodone.

 July 10, 2010 

Saturday 10:38 AM

Heading into my minor surgical procedure at MSK on Friday of last week, the biggest risk was that I would have a heart attack or stroke, because I could not receive my daily injection of Fragmin-- which was prescribed for me by MSK-- the day before the operation. Accordingly, I was supposed to be injected with Fragmin as soon as I emerged from the operating room.

 My procedure was delayed for a few hours, and my anxiety about the Fragmin grew steadily. At each step before I received anesthesia, I questioned the relevant professional working on me to make sure that the administration of the Fragmin was in my charts and would take place as soon as possible after my surgery. Each time, I received assurances.

When I regained consciousness in the recovery area, I immediately asked about the Fragmin. I was told that the nurses on the floor to which I was headed and where I was to spend the night being observed would take care of it. As soon as I was wheeled on a bed to my hospital room, I asked the nurses to please inject me with Fragmin. As they could find no instructions in my charts, they said that they would have to have a doctor authorize it.

After a few more hours and their eighth call to try to get a doctor to respond to them, I gave up and asked Susan to go home and get a couple of syringes pre-loaded with Fragmin. When she returned with them, I injected myself with one of them. I think that my self medication probably violated hospital rules, and I would guess that it was not recorded in my charts. The nurses thanked Susan and me for taking care of the problem.

 July 10, 2010

Saturday 11:22 AM

 Much of my waiting time at MSK before my recent surgery was spent in its new pre-surgical facility. The spacious, well-lighted family area of this handsome facility features beautiful wood, tasteful fabrics, lovely art and nice restroom facilities. The area for the patients and healthcare professionals is also quite well designed.

Unfortunately, the three toilets for patients all have such shallow bowls that if a man were to sit on them to defecate, his testicles would be immersed in the water. I had first became aware of the existence of such gratuitously degrading toilet-bowl design in MSK's UCC.

Fortunately, by waiting until the doors preventing patients from exiting into the family waiting area were buzzed open to permit passage to some authorized person, I was able to use one of the normally designed toilets in that area.

July 11, 2010

Sunday 11:00 AM

There is a defect in the catheter that was inserted in me last week-- a jagged piece of plastic as sharp as the point of a knife. We wrap the defect in gauze and tape to prevent it from puncturing my skin.

 July 11, 2010

Sunday 6:40 PM

 Currently, my primary focus in life is getting through the sometimes painful and usually dispiriting maintenance chores of that day's 24-hour cycle. Although I have help with most of these chores, I perform some on my own. For example, I inject myself in the thigh each morning about 8 a.m. with Fragmin. Although my condition is deteriorating inexorably, there are learning curves associated with most of these maintenance chores that are allowing us to perform them more efficiently and in some cases with less discomfort for me.

 

 

URL for Susan's Blog

Here's my URL. There is nothing there yet.

http://susanharrisnyc.blogspot.com

Susan's New Blog

With the original purpose of Charlie's blog being convenient communication with family and friends, and Charlie having now decided to stop writing, I have decided to start my own blog for the sole purpose of meeting the original objective. As soon as I have it set up, I will post the URL here.

Search for Remaining Meaning

On Friday, July 1, the Interventional Radiology surgeons at MSK drained three liters of fluid from, and inserted a Tenckhoff catheter into, my peritoneal cavity. Because the catheter sticks out precisely where the belt line of normal trousers would be, I am relegated to wearing sweatpants. I now have a team of three "family substitute caregivers." Each morning and evening, one removes another half liter of fluid from me, for an allowed daily maximum of one liter per day. Although I have had fevers since Saturday, I feel less pressure on my stomach and can eat and sleep more-- so, on balance, I feel better.

I have reached the point that, whenever I leave the hospital, I feel as if a piece of me remains behind. Although I have entered home hospice care, MSK will remain my primary medical resource. Nevertheless, a primary objective of home hospice care is to minimize hospital visits.  

With so much of each of my days and nights now consumed with the ignominy of self maintenance, it is difficult for me to find adequate meaning to justify my continued existence in anything other than spending as much time as possible doing things with my immediate family. 

It seems a logical time to end my blogging. As I have not yet succumbed to the blandishments of the doctors, nurse-practitioners, nurses and hospice workers to take opiates, I have only myself to blame for any inane posts. My work on the book, Incurable: A Life After Diagnosis, is essentially done: it is in the hands of the publisher for copyediting and other decision-making. Although I am unfamiliar with the process, I assume that I may be consulted further-- which would be interesting and fun for me-- by the publisher, the editors, and the book designer.

Thank you for your reading of this blog and for accompanying me on the better part of my journey since my diagnosis as an incurable. I hope to continue to receive your letters and emails.

Bravery

Friends often tell me how bravely they think I am confronting my disease and impending demise. As my family can attest, if stoicism and bravery are synonymous, I am far from being a brave man. In response to pain and suffering, I do my share of moaning. And soon I will capitulate and start using the opiates that the doctors and nurses and my family are urging me to take.

Before and After

I cannot recall a July 1st in New York City as cool and dry as today. As the Fourth of July approaches, I think nostalgically of our many Fourths of July on Long Island playing in the annual three-day Liberty Bell golf tournament and celebrating with friends at their lake place in Connecticut. 

I tend to think of my life as having taken place before and after diagnosis. As I look back today, the 16 months since diagnosis seem almost as long as the 66 years preceding it. Yet, since diagnosis, I have celebrated only one round of birthdays for my wife, two children, mother, father, and myself, as well as one wedding anniversary, two Memorial Days, and one set of all other national holidays. My mother's second birthday since my diagnosis will be July 16.

R.E.M. Sleep

Recently, I have been taking about a half dozen naps each day. Most of them are quite short-- often of only a few minutes duration. Almost invariably, I dream. These dreams are rarely nightmares. 

I had long thought that it took awhile to go through several stages of sleep before reaching the rapid eye movement (R.E.M) stage that I had understood was a prerequisite for dreaming. I suppose that I must have a cumulative deficit not only of sleep in general, but of R.E.M. sleep in particular.

Current Events

Day before yesterday, thanks to the initiative and editorial prowess of Professor Andrew Lo, I had accepted for publication, in the highly regarded Journal of Investment Management, a modest compilation that I had written originally in 2008 for my colleagues at Harris & Harris Group, "Some Lessons Learned in 42 Years of Business." 

Yesterday morning, our daughter, Elizabeth, arrived on a redeye from the West Coast for a visit through tomorrow.

Yesterday afternoon, two months ahead of deadline, thanks to the Herculean efforts of my colleagues, we submitted  to Cold Spring Harbor Press the manuscript of my book, Incurable: A Life After Diagnosis.

Today, I will go to MSK to have blood drawn.

Friday morning, I will be readmitted to MSK for a procedure in which interventional radiologists are to insert a permanent drain in my body to attempt to reduce the fluid level in my peritoneal cavity caused by ascites.

Saturday morning, if all goes well, I will return home.

Happy Fourth of July Weekend!

Taking Inventory

With the aid of a drug, Reglan, I can still eat small portions of chicken, potatoes, rice, pasta, eggs, cream o'wheat cereal, yogurt, molasses cookies, apple sauce and cooked zucchini. I can drink water, Gator-Ade and cranberry juice. I can sleep, in spite of a worsening skin rash, in the fetal position on my left side for an half hour at a time, occasionally even an hour, before I am awakened by musculoskeletal pain from lying in one position or by the need for a bowel movement. I can see well enough by peering to hunt-and-peck out this post, to read in good lighting and to watch television. I can concentrate well enough to read a newspaper article, though not a book. I can still work on the book with our editorial and design team for brief, intense stretches. I can still remember things, though sometimes I have real lapses in short term memory-- I am hoping such lapses are owing to the Reglan. I enjoy listening to music, mainly classical and jazz. I am strong enough to walk a few blocks, but I would have physical difficulty enduring another long wait in the Urgent Care Center. I can wear a loose polo shirt, though not a tee shirt or a dress shirt. In certain positions, if I am not too tired, I can sit pain-free in a comfortable chair for a couple of hours. Sometimes I have no fever, often I have only a mild fever and only rarely do I have chills and shakes. I am taking Tylenol now, but only when my temperature starts rising. I like getting emails from family and friends, and I check my CrackBerry often.

We interviewed home hospice services late last week and expect to sign a contract with one early this coming week.

Returning to the Winner's Circle

In today's sixth race at Belmont Park, Hot Money circled the eight-horse field on the turn for home in a seven furlong turf race and won going away by a half a length under jockey Rajiv Maragh. Unlike today, Hot Money had not gotten smooth trips in his first two races. But those two losses did not deter the bettors from backing him down to second choice at 2.4-1 odds today. Hot Money's cumulative gross earnings are now some $87,000. Although I was not well enough to go out to Belmont Park, Susan represented us well in the winner's circle.

Because Hot Money works extremely well on dirt in the mornings, we are going to race him next on dirt and see if he is as good or better than he is on turf. Meanwhile, there are races in coming days for Mustang Island and for Backslider, which would be making his debut.

The Little Children

The most heartrending sight at a cancer center is the kids with cancer. If they and their families are not amongst the most suffering and bravest of humankind, who could be?  If I believed in a personal God, I think that my compassion for them would be combined with extreme anger.

Illness and Inefficiency

During my adult life, I enjoyed exceptionally good health. Consequently, I find that being ill, especially in the context of terminal decline, to be frustratingly inefficient. I have spent the last 12 hours or so, starting about 5 PM yesterday, dealing with a low-grade fever, bodily pain, diarrhea and slight nausea. I have been able to eat only small portions of food and sleep only in stretches of about an half an hour. No interactions with people outside my immediate household, no writing, no reading, only small snatches of television.

An existence consisting primarily of tending to my miseries while in inexorable decline is not only boring, but also strikes me as self-indulgent and ignominious. I am very fortunate that, so far, I have still been able to work most days with my colleagues-- via email, Skype and FedEx-- in recasting this blog into a book. Otherwise, I would have no project and little work to show for my waning days.

Purgatory

After studying my blood tests and examining my right Achilles tendon, the physician on duty, Dr. Klotz, thought that the soreness and stiffness in the area of my Achilles tendon was either a blood clot (I'm not kidding) or a swollen tendon caused, most likely, by Levaquin. Rather than, as he said, torture me with more tests or readmission to the hospital, he sent me home about midnight with two new antibiotics. I was most grateful for Dr. Klotz's common sense and compassion.

Heaven, hell, and purgatory can be located anywhere. The emergency room of a cancer center is one outpost of purgatory.

A Weird Drug Side Effect

I'm headed back to the UCC. But first we'll have dinner at home. There is no telling how many hours I will have to wait in the UCC to be seen.

The antibiotic, Levaquin, that I began taking on Saturday, may have swollen or ruptured my right Achilles tendon.

A Black Comedy, In Three Acts

At 7:30 Saturday morning, Susan and I reported to the Urgent Care Center, as instructed on the computerized appointment schedule that MSKCC maintains for each of its patients. Dr. Glare had tried to arrange for me to bypass the UCC and be seen directly by the Interventional Radiology department, to determine whether the I.R. doctors could remove some of the ever-increasing fluid in my body cavity. Thus, I was feeling a bit grumpy about having to keep a third appointment with the UCC, as the first two such appointments had proved to be an exhausting waste of time. 

We waited about two hours for a confused UCC physician to see me, who said that my records showed that I had gone to I.R. two days previously to have fluid drawn. Nevertheless, she agreed to examine me ultrasonically to see if there were fluid she could access with a needle; she found an accessible pocket and drained some three liters of fluid. I would guess that there are another ten liters where that came from. After I was dismissed, and we went home and had lunch, I discovered that the UCC had forgotten to disconnect my Mediport. In a lamentable mood, I paid my second-- this time gratuitous-- trip of the day to the UCC.

When I returned home, I worked on this book via Skype with the book designer and editor and suddenly developed chills so severe in the 90- degree summer temperature that I had to don a heavy cashmere jacket, ski parka, stocking cap, and Arctic gloves to stop shaking. My temperature shot up to 101.9 degrees. Partly because of dread of another long, uncomfortable wait, I delayed going back to the UCC. Also, I was trying to think through whether dying of an infection might not be as good an alternative as I am likely to get. 

I concluded that I don't know anything about dying of an infection and reluctantly went back to the UCC about 7 PM. About three hours later a doctor saw me, who recommended that I be hospitalized and begin intravenous antibiotics. In spite of my having had an adverse reaction to a penicillin drug in the past, she recommended using a penicillin-related drug. When I asked what would happen if I got an anaphylactic reaction, she said, "We will intubate you."  

After signing a form indicating that I was acting against MSKCC's advice, I got a prescription for non-penicillin antibiotics, and we went home. Altogether, my three trips to the UCC had involved about eight hours of waiting around, with pain mounting as fatigue deepened. As I finish this post on Father's Day morning, I have gotten a little rest, and I have only a mild fever.

A World of Madness

Because I have expressed my willingness to trade quantity of life for quality of life, MSKCC's palliative care unit's protocol for me yesterday included having me see a staff psychiatrist to make sure that I am not depressed. The psychiatrist seemed to agree with the palliative- care professionals, and with my own assessment, that I show no signs of depression. As I have tried to reassure all concerned, my thinking about quality of life versus quantity of life and my personal disinterest in staving off death to a bedridden, drug-addled bitter end were formed long before I was diagnosed as an incurable.

Yesterday, I also continued an extended conversation with the professionals in the palliative-care unit not only about what they might be able to do to alleviate some of my symptoms, but also about the limitations on their care in general. (Given the boundaries of laws and medical ethics, I doubt that their limitations are any different from those of professionals in other secular cancer centers.) My understanding is that much of what they can do is to try to 

alleviate patients' pain with opiates. The opiates in turn cause constipation, which can cause an anal fissure, as indeed happened to me in the aftermath of all of the complications from my second surgery. If I had to choose between being dying sooner and getting another anal fissure, dying sooner would be an easy choice. As the doctors tried to do after my surgeries, the palliative- care doctors and nurses try to offset the opiates with other drugs to avoid constipation, while trying not to trigger in turn diarrhea. Palliative care can also include palliative sedation in the final stage of dying, but not before.

I told the professionals in the palliative-care unit that, to me, taking palliative drugs that would require taking other drugs to treat the side effects of the palliative drugs, and so on, was a form of madness. The nurse-practitioner nodded and said that was the world in which they worked, a world of madness. I replied that I very much wanted to avoid entering that world. As I told them-- and they tacitly seemed to agree-- I think that the only alternative for someone in my situation who does not wish either to enter that world of madness or, out of respect for the sensibilities of family, to commit suicide, is simply to stop taking food and water once further prolonging of the dying process seems unwise or intolerable.

In the meantime, I agreed to go back for a third time to the Urgent Care Center to see if the doctors there or in Interventional Radiology can find some way to put a needle in my body and drain from it some of the steadily mounting fluid. And I agreed to try some non-opioids, that supposedly do not cause severe side effects,  to try to alleviate some of my symptoms. Fortunately, I read the package insert before I actually took one of the pills: one of the possible side effects of this non-opioid painkiller is constipation so severe that it requires manual extraction of the feces.

The Chemotherapy Industry

According to today's "New York Times:" The academic journal "Health Affairs" reported that, after Congress cut back payments for certain cancer drugs, lung-cancer specialists in the aggregate who administer chemotherapy in their offices responded by treating more patients with chemotherapy and by switching to more expensive, but not necessarily more efficacious, drugs, thus recouping lost income.

Back to Bed

The stasis has resolved itself. Today, I will consult with MSKCC and think about whether I can chance taking more painkillers. In the meantime, it is raining hard, and I am going back to bed.

What to Do Now?

Today, I took two 5 mg doses of Oxycontin, for a total of 10 mg or one quarter of the maximum 40 mg daily dose that MSKCC prescribed for me. The drug arrested my pain, but it also has paralyzed what is left of my colon. Having gotten only about three hours of sleep last night plus a nap of about an hour's duration today, I am exhausted. When I go to sleep, I reawaken almost immediately from an urge to have a bowel movement, which my inert colon is incapable of delivering. In the absence of better ideas, I will keep drinking a lot of water, not eat, and try to stay awake. I have a previously scheduled appointment tomorrow (Thursday) afternoon with Dr. Glare at MSKCC. 

However well intended, feeding drugs to terminal cancer patients, especially drugs to counteract the side effects of other drugs, strikes me as ofttimes mad. Predicting the side effects of any drugs in people as compromised as incurables who have previously been subjected to various draconian treatments seems to me to be guesswork, however educated.

Drugs For the Dying

Because I have wanted to avoid side effects-- the most common of which is constipation, which can have serious consequences for someone who has had part of his colon removed-- and I have wanted to avoid addling my brain, I have been fighting the temptation to take painkillers. On June 1, I relented enough to take a Tylenol; and since then, I have taken about four more. Last night, a Tylenol wasn't sufficient to mitigate the pain radiating through my body cavity, and I could not sleep at all. With great misgivings, I started down the one-way street of drugs for the dying. 

I took the minimum dose, 5 mg, of Oxycodone HCL that MSKCC had prescribed for me. The pain eased quickly, and an hour or so later, I began sleeping for about an half hour to an hour at a time, for probably about three hours of sleep altogether. Oxycodone mimics morphine. My current prescription permits me to take up to 40 mg per day. 

Witness to Greatness

Yesterday morning, Susan and I rode with friends in their Maybach to New Haven to see the Stubbs paintings. The backseat of that splendid automobile is so comfortable, and the company in the car was so delightful, that the drive to and from New York was pain-free for me. Of the Stubbs works, the piece de resistance in the New Haven museum is the monumental canvas of the first of Stubbs' known portrayals of  lion/horse encounters.

When we returned from New Haven, it started to rain. My son and I watched on TIVO the second start by the phenomenal rookie pitcher, Stephen Strasburg. After dinner, on a live television broadcast from Los Angeles, we watched Zenyatta set a new record for thoroughbred horses, in a hard-fought victory, by winning her 17th straight start.

By the time I went to bed, I had a fever and was in some physical distress. But I had been a beneficiary of greatheartedness and witness to greatness throughout the day.

Fighting for Quality of Life

Although I have always felt profound respect for any individual's urge to postpone his or her death for as long as possible, I have for many years been appalled at the enervating and degrading treatments inflicted on incurable cancer patients. When I was given a chance at a cure, as noted previously, I was cavalier to the point of foolhardiness about the possible risks and probable consequences of undergoing two major abdominal surgeries, each of which included a liver resectioning. I have paid and am paying a terrible price for those unsuccessful surgeries. Nevertheless, even in the midst of my worst post-surgical complications and ordeals, I have never regretted having risked everything for a chance of cure. Conversely, in cases where cure is not possible, it has been been clear to me for many years that, if I were in that dire situation and were given a choice, I would opt for quality of life over quantity of life. 

The biggest surprise to me when I commenced cancer treatment is that little goes according to plan, and nothing is black or white. Even with a garden-variety cancer such as my metastatic colon cancer, a high percentage of my symptoms from the cancer and from the treatments were inexplicable to even the renowned specialists taking care of me. Consequently, their ability to predict the consequences of undertaking a given treatment seemed to me to be very limited-- not by their undoubted expertise, but by the primitive state of the art. 

While no treatment option was ever presented to me as a choice between quality of life and quantity of life, I did read implicit understanding of my priorities into my medical oncologist's approval of my decision to postpone further chemotherapy, in the form of FOLFOX, for as long as possible after the unsuccessful surgeries. Even if FOLFOX had proven to be efficacious for me, as it did not, it was never presented to me, and it is by no means clear, that commencing FOLFOX earlier would theoretically have prolonged my life longer than commencing FOLFOX later.

I am in awe of the doctors, nurses, and aides who take care of cancer patients. Certainly, I cannot imagine that I would be able to go to work each day and watch my patients and their families suffer, knowing-- whether they are in denial or not-- that so many of them will die before their time, often in the wake of horrible agonies. From what I have read and observed, the ability to compartmentalize, the ability to focus on fighting death, and the belief in helping to advance the state of the art are critical to oncology professionals maintaining their morale. Such a milieu is not conducive to advising a patient that a treatment option might enhance quantity of life but would almost certainly decrease quality of life. Thus, in my limited experience, a cancer patient trying to weigh a strategic desire for quality of life against an actual treatment option is left to his or her own devices.

Now that I am officially in palliative care, it is clear to me that the ethos in either hospice care or plain palliative care is for the patient to ingest various drugs to deal with pain, blockages, and other symptoms. In a typical scenario, when the patient becomes sufficiently helpless, the patient is moved around in a hospital bed--  temporarily installed in his or her home-- to avoid bedsores. Eventually, he or she may well be in diapers and in a coma or otherwise has no more desire for food and water. If do-not-resuscitate orders are in place and are actually observed, the patient is finally allowed to die, in a process that can legally include the withholding of all sustenance including liquids and the administration of pain killers that may have as a side effect, but not objective, the hastening of death. 

In summary, the oncology industry, for understandable reasons, is geared towards promoting quantity of life, even at the inadvertent price of compromising quality of life. 

I made good use of my respites from treatments. During the first break, in June and July of 2009, Susan and I socialized and even went to Saratoga Springs for six days. During the second break, after I recovered sufficiently from my second surgery in early August, we resumed travel: Paris; multiple trips to Florida and seeing relatives and friends at points on the East Coast between Boston and Southern Florida. During my penultimate trip to Florida, I was able to be with my father during the last hours of his life; and Susan and I went to Australasia for a month. 

Even now, I have shards of quality of life that I would not have if I were in the throes of irinotecan/Erbitux. This morning, friends are driving Susan and me to New Haven to view the world's largest Stubbs collection, bequeathed to Yale by Paul Mellon. 

Would I live longer had I submitted to irinotecan/Erbitux? Probably, if that chemotherapy had proved to be efficacious for me. In any case, delaying death might be a mixed blessing, given all that is wrong with me now and with my belly getting bigger and more uncomfortable every day. Because of cancer's endless supply of tricks, one must be careful about making wishes. 

My growing belly vexes me constantly.  Up until early 2009, I ate robustly and got some three hours of exercise a day, including an hour of walking. I weighed about 165 pounds. Today, I can eat very little, and I get very little exercise. Consequently, except in the belly, I am the thinnest that I have ever been in my life. I weigh 180 pounds.

If I could be granted another 30 years of life in my current condition, would I wish for it? No, I would not. It follows that I have no interest in trying to withstand six months of a hideous chemotherapy, like irinotecan/Erbitux, in hopes of postponing the relief of death for several months.

Enervation and Desires

As a result, I think, of clouding cataracts, my vision is dimming. Each day, my belly swells, and my stamina ebbs. Three weeks ago, I rarely took a nap. Today, for the first time, I needed two. Looking ahead, I am struck by Tolstoy's words on the death of Nikolai Levin in Anna Karenina.

"His sufferings, growing more and more severe, did their work and prepared him for death . . . Hitherto each individual desire aroused by suffering or privation, such as hunger, fatigue, thirst, had brought enjoyment when gratified. But now privation and suffering were not followed by relief, and the effort to obtain relief only occasioned fresh suffering. And so all desires were merged in one-- the desire to be rid of all this pain and from its source, the body."

Whistlejacket in My Eye

When we commenced the project of reshaping the material in this blog as the heart of a book, one of the first subjects that Nanette Stevenson, the book's designer, raised-- via conference call on Skype (Nanette lives and works in Alaska)-- was artwork for the dust jacket and possibly within the book itself. When she asked if I had any suggestions, I had not yet thought about a dust jacket. As we began to discuss suitable art, my eye fell on a pile of books on my coffee table, and I began fumbling through one, Tamsin Pickeral's The Horse: 30,000 Years of the Horse in Art (Merrell Publishers Limited, London 2006). After flipping through two or three pages, I seized upon a reproduction on page 218 of a 1770 painting by George Stubbs, A Horse Frightened by a Lion.

This Horse Frightened by a Lion is part of the permanent collection of the Walker Art Gallery in Liverpool, where Stubbs grew up. Altogether, Stubbs is known to have produced 17 paintings, including one enamel of which I am aware, on a Romantic horse- versus- lion theme. I saw this particular painting about three-and-a-half years ago at the Frick Museum in New York, when it was one of 17 Stubbs paintings on various subjects on loan in a traveling exhibition in the U.K. and the U.S.

Evidently, Stubbs deliberately portrayed the lions in this series as mangy "demonic mockeries" (page 117, Stubbs & the Horse, Yale University Press 2004). "In Stubbs' world, the horse is first and noblest among animals and the lion at the other end of the scale.... In his later treatments of the theme, Stubbs made the horse white and the lion more shadowy, heightening the sense of good against evil (Ibid.)." To paraphrase the Frick curator's notes, what mattered was not that the lion would inevitably devour the horse, but rather that the horse struggled nobly.

From the time that I was first exposed to Stubbs, he has been my favorite painter of equine scenes. He was one of the first artists to paint famous thoroughbred race horses; and, as a result of gruesome anatomical studies, his understanding of equine anatomy was unmatched by artists in his day. About 1984, I purchased my first art book that featured prominently Stubbs' works, The Horse in Art by John Baskett (George Weidenfeld and Nicholson Ltd., 1980). My small library contains also a copy of Stubbs' 1766 The Anatomy of the Horse (Dover Publications, Inc. 1970).

Regretably, I have never visited the museum that Paul Mellon established in New Haven, the Yale Center for British Art, which houses most of the 40 Stubbs works that Mr. Mellon, a leading owner and breeder of thoroughbreds, collected during his lifetime. Nor have I ever actually seen my favorite Stubbs painting, the startlingly modern, life-sized, and almost photo-realistic Whistlejacket, acquired in 1997 by the National Gallery, London. But I do have Whistlejacket forever in my mind's eye.  

A Primer on Racing

Several friends have emailed to ask if we made it to the races yesterday and to inquire about Mustang Island's degree of success in his race. We did get to Belmont Park in time to see the last four races on the card, including the $400,000 Grade I Manhattan Handicap, the $1,000,000 Grade I Belmont Stakes, and, two races later, Mustang Island's $48,000 allowance race. After the track announcer declared that yesterday's feature race was the 102nd running of the Belmont Stakes, I couldn't resist saying to a friend, "I missed the first 55."

In handicap races, the more accomplished horses in the race carry more weight. Allowance races are good quality races, and non-graded, listed stakes are even better. Grade III and grade II stakes races are progressively higher quality races. Grade I stakes races are even higher quality races, and a handful of so-called classic grade I races like the Belmont Stakes are the defining races for a generation of horses. Most owners, trainers, and jockeys never win a grade I race in their careers. Although a horse of mine, Primitive Pleasure, placed (i.e., finished in the top three) in two grade I races, and another horse of mine, The Wedding Guest, was favored in a group I race, I have never won one.

Yesterday, there were many top horses competing in important races at Belmont Park. The outcome of the Grade I Manhattan Handicap, in which our trainer, Christophe Clement, ran two horses for two different owners, was illustrative of the vagaries of racing. One of his trainees, champion Gio Ponti, went off as the 6-5 favorite in the field of 11 and finished second to his other entrant, Winchester, a 20-1 longshot. In grade I races, much more than prize money and cherished trophies and memories are at stake, including potential careers at stud and the values of the horses' dams (mothers) and siblings.

In the race in which Mustang Island-- a horse that is always anxious to run-- participated, we wanted Rajiv Maragh, his jockey, to cover him up early so that he would not burn energy fighting against Maragh's hold on the reins. When a horse is covered up, it has a horse directly in front of it and preferably one also just to its outside. As a result, the horse paces itself to keep from running into another horse. As the race unfolded, as we had anticipated, the horse in the number one post position sprinted away to a clear lead on the extremely firm track surface. Unfortunately, none of the other horses dropped down to the open spot on the rail. Thus, Mustang Island had daylight in front of him the whole way. As a result, he fought for his head throughout the race and never relaxed, finishing third, beaten less than two lengths for first and a nose for second. Having lost two races in a row employing this strategy with Mustang Island, perhaps we should permit him to go to the lead at the beginning of his next race.

As long as my horses run competitively, adverse racing luck never bothers me. I am mindful that I have won my share of races with an assist from good racing luck. 

Belmont Stakes Day

Tomorrow is Belmont Stakes day, traditionally the most important day of racing each year in New York, which has more important races than any other state. Upon reflection, I can recall having missed attending only the 1968 running of the Belmont Stakes-- the "test of champions," at a distance of a mile and a half-- in the last 47 years.  A man must have priorities. 

Because there is no Triple Crown on the line this year-- different horses won the Derby and the Preakness this year, and neither of them will contest the Belmont-- attendance will be below that of years of peak interest. Nevertheless, the undercard will be loaded with big fields of horses competing for big purses. The race prior to the Belmont Stakes will be the $400,000 Grade I Manhattan, in which the favorite to win will be Gio Ponti, trained  by Christophe Clement.

Two races after the Belmont Stakes, we will run Mustang Island, which will likely be first- or second-choice in the betting in a modest $48,000 allowance race on the turf restricted to horses bred in New York State. Still, it would be a thrill to win a race on Belmont Stakes day. 

Because the Belmont Stakes and our race are so close together in time, if I feel well enough, we are going to try to attend that span of races. If we go, we will park at Christophe Clement's barn, which will shorten my walk to the grandstand and our box. To maximize my chances of feeling well enough, I will try to take a nap after lunch tomorrow.

The Psychology of a Decision

I have decided to undergo no more chemotherapy. For days, I tried without success to envision my having peace of mind while subjecting myself to a course of chemotherapy in the form of irinotecan and Erbotux in the knowledge that at best, at my advanced stage of incurable disease, my courting of this particular chemotherapy's handmaiden, grotesque suffering, had been for the sake of short prolongation of life and the dying process.

At no time in my internal deliberations was I able to convince myself that this chemotherapy under these circumstances would be good for my family or consistent with my desire to maximize the quality of my remaining days. Thus, ironically, unlike my agonizing over the years about countless trivial choices, I was able to make without angst this life-altering decision. 

Time's Arrow

When I was given the opportunity to choose elective surgeries and chemotherapies that would give me an estimated 20 percent chance of a cure, I was almost indifferent to the pain and risks that undergoing the surgeries would entail. Because it was certain that I would not live for long if I did not have the surgeries, the potential reward was disproportionately greater than almost any risks. 

Now my cancer is growing aggressively and rapidly restricting my life. Through the combined pressure of fluid accumulating in my body cavity and swelling of my liver and spleen, my organs have pushed through my stomach wall and are now protruding beneath my skin. The doctor who saw me at MSKCC's Urgent Care Center on Sunday and this morning told me that the flexibility of the skin will however prevent my organs from bursting through my skin into the open. 

This morning at the Urgent Care Center, the doctor was once again not able to locate with ultrasound any fluid in a location where it could be removed. Because my CAT scans show that my colon is thickening, and putting solid food into my stomach has become too painful for me to bear, she also had X-rays taken of my colon to see whether it has any blockages. Although my colon is not blocked, I was given a list of symptoms of such blockages to monitor. It is also now possible that my intestines could become twisted and blocked as they protrude though hernias in the fascia of the stomach wall. If I develop blockages, the first treatment would entail hospitalizing me with a tube running down through my nose into my stomach.

Because I will probably die soon and almost certainly die within a year or so no matter what treatments I undergo, the suffering and humiliations of further chemotherapy and the risks of prolonging dying now loom large in my thinking. When I was first diagnosed by Dr. Saltz as incurable, then once again diagnosed by him as incurable after the surgeries failed, I told him that my priority was quality of remaining life, not quantity of remaining life. 

Increasingly, the quality of my life is eroding. Blood tests show that I am anemic. I can't eat normal amounts of normal foods, partly because my swelling spleen and liver are increasingly squeezing my stomach, thereby restricting its capacity. I can't exercise anymore, beyond walks of a dozen blocks or so.The taut skin of my belly is so sensitive that showers are painful, and I dread the mere touch of fabric. I am starting to be afflicted by fevers of unknown origin. Pain is spreading into new locations in my body-- today, into my right side, just below the ribcage. Last night, for the first time, I took a pain killer-- 500 mg of Tylenol-- so that I could get comfortable enough to sleep.

This afternoon, Susan and I will meet again with the palliative care specialist, Dr. Glare. I am particularly interested in gaining a better understanding of the risks that I will now be running if I prolong the dying process. I know that my circumstances could change quickly, with dire consequences; and that the converse is not true. For mere mortals, time's arrow has but one direction.

Coda

Even though my life is being cut short, it has been my good fortune to have been married for over 42 years to a loving, supportive, and altogether wonderful wife. Susan is the sun around which the members of our immediate family-- she and I, our daughter, Liz, and Liz's daughter, Kayla, and our son, David-- revolve. Moreover, the gravitational pull of her love and competency on her own family-- her father, her father's friend, her brothers, sisters-in-law, nieces, and nephews-- helps to keep its members in orbit as well. Even within the members of my own family-- her in-laws-- her selfless willingness to assume responsibility exerts a palpable force.

As a helpmate, Susan enabled me to focus on what I liked to do in my career and in our private business affairs by doing all of the thankless tasks for our whole family. I never saw a bill, much less paid it. I even signed our income-tax returns as the "innocent spouse." In our horse business, I picked out the young horses at the sales, studied pedigrees, inspected and bought and sold horses, worked with the farm managers, veterinarians, and other professionals, and talked strategy with the trainers. She did the hard work, such as keeping the books, working out the depreciation schedules with the accountant, and purchasing the insurance coverages that I wanted. When we had a cat, Sparky, prone to biting and scratching, that developed first lupus, then diabetes, Susan was usually the one who put the prednisone pill in the back of his throat and injected him with insulin.

Engaging in all sorts of activities, from high-brow to low-brow, from attending academic lectures and concerts of classical music and jazz to playing and watching sports, we had countless wonderful times as a couple and in the company of other couples, friends, and relatives. When we were first married, I had nothing but debts for my education, and we would attend Yankees' games on a budget of about $10.00 for the day-- the centerfield bleacher seats were $1.00 each. As our time together grew short, we particularly appreciated the opportunity to travel last year to Paris and this year to New Zealand and Australia.

The most cherished memories of my life record the years when our children were small. Susan is a superb cook as well as mother, and she made the holidays special-- all that I had ever dreamed that holidays could be for a family. We had delightful vacations with the children as well, both domestically and abroad. I remember celebrating David's fourth birthday at an outdoor table at a Michelin three-star restaurant in Provence, L'Oustau de Baumaniere, where Liz and David were more interested in the kitchen cats than in the haute cuisine.  Each year, for the month of August, we rented a house in Saratoga Springs that left much to be desired, but had the redeeming feature for young children of containing one of the town's few in-ground swimming pools.

My worries about being dead concern its effect on my family. Nothing can fill a departed family member's void, and I am profoundly sad to be leaving my loved ones. Nevertheless, as I face the pain of departing from our family, I have the peace of mind of knowing that the sun of Susan's love will continue to provide our family with  gravitational stability, warmth, and sunshine. 

Sunday Morning on a Holiday Weekend

Yesterday afternoon, I developed a fever for the first time since my surgeries. People undergoing chemotherapy frequently develop fevers, but I haven't had chemotherapy in several weeks. Because of the fever, when I reported to MSKCC's Urgent Care facility to have fluid drained from my abdomen, the doctor on duty first checked for an active infection by testing my blood and urine and then ordering a chest X-ray. Finding no cause for the fever, she then performed an ultrasonic examination to determine where to place the needle to drain as much of the fluid as possible. 

Unfortunately, the fluid turned out to be behind the intestines and bowels where it cannot be drained. Meanwhile, my midsection grows ever more distended and painful, both internally and, as the skin grows tighter, externally. Based on my weight gain, I estimate that about twenty pounds of fluid has accumulated so far. The doctor also reported that my liver is swelling and my colon thickening. She thought that it would be worthwhile for me to come back into the Urgent Care facility on Tuesday morning for her to perform another ultrasonic examination, just in case some of the fluid shifts to an accessible location. Afterward, I will attempt to meet with or at least speak with Drs. Saltz and Glare.

It is a  sunny day in New York City, with low humidity. With many of Manhattan's residents away for the long holiday weekend, it is peaceful. Susan and I walked the dozen blocks from MSKCC's main campus to our home. The stretch along York Avenue in front of Rockefeller University is a particularly pleasant walk, paralleling an oasis of leafy trees harboring discreetly placed tennis courts.

What Is Required of Me Now?

For many years, I have used a motivational question that I cannot recall ever failing me: "What is required of me now?" I do not know where I learned this saying, or if it originated in Buddhism or other religious and spiritual traditions. It may be a commonplace secular motivational tool as well.

So far, since I was diagnosed with cancer 15 months ago, this motivator has continued to work for me. For example, if I awaken in the morning in a comfortable position and dread the pain involved in getting out of bed, asking myself this question and then answering it (i.e., "I have to inject myself with Fragmin") prods me into action. When I cease to respond to this motivational question, I will know that the spirit is going out of me.

Weighing the Odds

Yesterday, Susan and I met with Paul Glare, MD, the Chief of MSKCC's Pain & Palliative Care Service, and with one of his colleagues. 

Dr. Glare volunteered to talk about my life expectancy. Previously, I have had to rely on the literature and conversations with non-MSKCC scientists to estimate how long I may have to live. According to Dr. Glare, if I wanted to enroll in hospice at this time, I would qualify. In other words, in the absence of more chemotherapy, it would be reasonable to assume that I would die within the next six months. Most of the colon-cancer patients sent to Dr. Glare die within two to 12 months-- including patients who continue chemotherapy and those who do not-- with a few outliers dying within two months or after 12 months. 

From Dr. Glare's specific examination of me and my records, his guess is that if I were to forego additional chemotherapy, I would probably make it through this summer and die this fall. If I were to undergo additional chemotherapy, and it were to prove efficacious, I would probably die later, but probably still within 12 months. He noted that third- and fourth-line therapies tend to be less efficacious than first- and second-line therapies. (In my case, the first-line therapy, FOLFIRI, was moderately efficacious; the second-line therapy, FOLFOX, was not at all efficacious.) 

I am still studying the probable and possible side effects of embarking on the irinotecan/Erbitux chemotherapy and trying to decide if a six-month course of it, followed by a recovery period of a month or so, would make sense for me, given my values and expected longevity. Here are some excerpts from Erbitux's package literature per se (irinotecan causes its own adverse reactions): "The most common adverse reactions with Erbitux (incidence > 25%) are cutaneous adverse reactions (including rash, pruritus, and nail changes), headache, diarrhea, and infection. The most serious adverse reactions with Erbitux are infusion reactions, cardiopulmonary arrest, dermatologic toxicity and radiation dermatitis, sepsis, renal failure, interstitial lung disease, and pulmonary embolus.... As with all therapeutic proteins, there is potential for immunogenicity." 

Dr.Saltz told me that when Erbitux is efficacious, patients always get a rash, and that patients for whom Erbitux is not efficacious may get the same rash. This rash looks like acne, may itch, and may extend from head to toe. While this rash is present, the skin has to be kept covered in ointments and cannot be exposed directly to sunlight. When Erbitux is discontinued, this rash usually, but not always, disappears, typically within a month.

Dr. Glare noticed that Susan was carrying a cloth bag from Coolmore Stud in Australia. He is Australian and said that he has kept his membership in the Australian Jockey Club. He asked if we have horses. I replied that we do and in fact had a runner, Hot Money, entered at Belmont Park for the next day. He asked if I fancied Hot Money's chances. I said that I did, but only at high enough odds to compensate for the risk that his disappointing previous race indicated some undetected problem. 

In Hot Money's race today, he was bet down to 5-1 odds. He ran well, closing fast at the end to gain third place. Before placing any bet, one should always weigh the odds.

St. Charlie

My brother, who lives in Virginia, is visiting my mother. When I spoke over the telephone with her this evening, she told he that he had just read her a May 24 article, "A Good Trade," that was written about me by the eponymous Ray Paulick, editor of the online thoroughbred horse publication, The Paulick Report (www.paulickreport.com). She exclaimed about Mr. Paulick's writing skills and about the dozen or so on-line responses to his article. 

I told my mother that I certainly concurred with her about Ray Paulick's writing and that the responses to his article were more than kind about me. I added that I was, however, having a little trouble adjusting to my new role as St. Charlie. She started laughing and agreed that that would be a lot to live up to. She was still laughing as I bade her goodnight.

Last Option

Yesterday, as previously scheduled, I had more blood tests, and Susan and I met first with Dr. Jarnagin, the surgeon who operated both times on my liver, and then with with Dr. Saltz. Dr. Jarnagin told us that last week's CAT scan showed that the chemotherapy was having "at best" no effect on the tumors. In response to a question of mine, he also said that, although there was no surgical intervention that would be efficacious against the tumor progression, drains could be inserted into my abdominal cavity to drain some of the fluid that keeps accumulating in my belly.

When we met with Dr.Saltz a few hours later, he confirmed that he was discontinuing my treatment with FOLFOX. He thinks that I now have tumors both in my abdominal cavity and in my stomach and that the fluid is cancer-related.

Dr. Saltz indicated that he has only one other chemotherapeutic option for me to consider: Erbitux combined with irinotecan. I was previously exposed to irinotecan, as it is an ingredient in the FOLFIRI cocktail with which I was infused soon after my initial diagnosis. Although FOLFIRI set off a bewildering Kaleidoscope of adverse reactions in my body, Dr. Saltz thought that I tolerated FOLFIRI relatively well. The more I think about my previous experience with irinotecan and study the literature on the irinotecan/Erbitux combination's probable and possible side effects, the more I marvel at its users' willingness to endure sufferings worthy of Job to try to stave off death .

If the irinotecan/Erbitux combination were to prove efficacious for me and its side effects were not life-threatening, I would receive it for about six months. Then, once-- and if-- I recovered sufficiently from the side effects, I might have one last period in which I could go out into the world again. 

On Sunday, I will undergo an invasive procedure under local anesthesia during which a drain will be inserted in my belly for some two hours. Dr. Saltz says that the chances of my getting another infection from the procedure-- I got a total of four infections last year from four procedures (two from one, none from another)-- are minimal and that the reduction in pressure should temporarily relieve some of the pain in my midsection. The fluid will rebuild-- perhaps over 48 hours, perhaps over three or four weeks. As the abdominal pain is starting to wake me up at night (I intend to avoid taking pain medication for as long as possible), the potential benefit of the procedure seems to me to justify its purportedly minimal risk.

Until forced to make a decision sometime in the near future, I will continue to mull whether the irinotecan/Erbitux regimen would be compatible with my goal of maximizing the quality of my remaining days. Meanwhile, Susan and I will meet tomorrow for the first time with MSKCC's palliative-care specialists. 

Appearances Are Deceiving

On Thursday, May 20, the book project's editor, publisher, and I met at my apartment for a working session via Skype with its designer and co-editor. Afterwards, on the sidewalk of East 57th Street, in front of my apartment building, the editor, Matthew Stevenson, snapped the photograph above of John Inglis, the publisher, and me. (John is the handsome young guy with hair and no glasses.)

A friend of mine saw the photo and remarked how well I looked in it. I must admit that I was surprised myself when I saw it. Either Matthew is an exceptionally skilled photographer, or it really is true that appearances are deceiving.

Man-Made Miracles

The cover article in this week's (May 22-28) issue of The Economist is entitled, "And man made life: The first artificial organism and its consequences." The article chronicles the background, and speculates about the consequences, of Craig Venter's, Hamilton Smith's, and their colleagues' publication in Science on May 20 of their creation of life from off-the-shelf laboratory chemicals. Their life form reproduces on its own and has a piece of DNA that carries about 1,000 genes.

In about 1997,  at an in-house meeting of The Institute of Genomic Research (known as TIGR and pronounced "tiger")-- Craig Venter's not-for-profit institution of which I was then a trustee-- I first heard Craig speak about this project. Although one should always expect audacity from Craig and should never bet against him, the notion of creating life from laboratory chemicals was even more mind-boggling then than it is now. 

Shortly after that meeting at TIGR, I attended a meeting at MIT at the Whitehead Institute that featured several of the world's leading geneticists. During the question-and-answer session, I asked if any of the panelists thought that it would be possible for man to create life artificially. None thought that it would be possible. 

Because mortality rates for most forms of cancer have not improved since federal funding for basic research in cancer began under the aegis of President Nixon's "War on Cancer," many have grown discouraged about the possibility of substantially improving outcomes for cancer patients. I, however, am excited and optimistic about the prospects both for improving cancer patients' quality and duration of life and for finding cures for various cancers, through the basic research being conducted in research universities and the drug-development work in the private sector. 

As far-fetched as substantial progress in the war on cancer may seem at times, creating life from chemicals seemed at least as improbable to many experts only 13 or 14 years ago. Whatever it costs, no matter how long it takes, basic research is the only hope for conquering cancer, and man cannot afford to give up hope. 

The Impulse to Philanthropy

What accounts for the impulse to philanthropy, especially for long-term projects like basic research into diseases' nature, causes, and cures? 

In a different era and context, Alexander Smith (1830-1867) wrote "... Knowing that his existence here is limited, a man's workings have reference to others rather than to himself, and thereby into his nature comes a new influx of nobility. If a man plants a tree, he knows that other hands than his will gather the fruit; and when he plants it, he thinks quite as much of those other hands as of his own." 

The Book of Job

Before someone who has received an initial diagnosis of cancer is asked to embark on a course of treatment, he or she should be given a copy of the Book of Job.

Book Contract

Yesterday, I signed a publishing agreement granting Cold Spring Harbor Laboratory Press (CSHLP) "rights to publish, and to license subsequent publication or other utilization by third parties, of a written manuscript entitled Incurable: A Life After Diagnosis...." For the last few weeks, I have been working with an experienced team, consisting of an editor, Matthew Stevenson, a co-editor, Michael Martin, and a book designer, Nanette Stevenson, to convert the material in my blog into book form.

Although a number of friends, including writers, have suggested to me since I started my blog that I should "write something," or at least rework the material in my blog into a book, I wondered if they weren't simply being kind about my writing, given my circumstances. Moreover, I doubted that I would have time to start a new book from scratch, and I couldn't be confident that I would have enough energy or time even to rework the material in the blog into book form. Not until Matthew, an oft-published author and editor, and a trusted friend of mine for decades, proposed to me a month or so ago that he and his team go to work with me on such a project did I stop dithering. 

Matthew presented to me a solution that would ensure the production of a ready-to-print manuscript even if I could no longer work on it before it was finished. Matthew keeps reminding us that "Every day counts," and we have made substantial progress. With the agreement with CSHLP in place and a literary executor, Al Perry, designated in my will, I am now confident that the book will not only go forward, but also be limited in its quality only by my writing and thinking.

Although Cold Spring Harbor Laboratory is especially well known for its basic research in cancer, I was both surprised and humbly grateful for CSHLP's interest in this project, as this prestigious university press is known primarily for its science books. While I was aware that CSHLP publishes some non-technical books as well, such as a recent biography of Francis Crick by Robert Olby, I did not think that anything written by or about a person of no historic significance like me would be a fit for CSHLP.

Because I have so little remaining time, I never presented the blog-to-book idea to agents or publishers. CSHL became aware of my interest in producing a book through a conversation that I had with a friend, Dill Ayres, the head of administration of CSHL, about some nascent ideas that I have regarding how I, or my estate, might utilize such a book in conjunction with fundraising for cancer research. Dill asked if he could tell John Inglis, the Executive Director and Publisher of CSHLP, about my interest in producing a book. To John's credit, negotiations proceeded  swiftly thereafter.

The book will be published this fall in hard cover: some 70,000 words printed on about 200 pages, with black-and-white photographs integrated into the text. Any author's profits will be donated by my estate, as directed by Susan, to cancer research. The overarching motif of the book is captured by Viktor Frankl's observation that ..."Everything can be taken from a man but one thing: the last of the human freedoms-- to choose one's attitude in any given set of circumstances, to choose one's own way."

Battling Cancer

Over the years, whenever I have read an obituary of someone who died of cancer, it invariably has seemed to state some variation on the theme that the deceased died after a valiant battle with cancer. While I have never doubted that anyone who died of cancer suffered terribly and bore his or her ordeal heroically, I have often found myself wondering if in every case the deceased fought his or her cancer, rather than sought some sort of accomodation with it?

If given an initial diagnosis of curable  cancer, most cancer patients probably choose to battle their cancer for at least as long as it is still regarded as curable. Even though cancer treatments involve poisoning, cutting, and burning with both temporary and permanent side effects-- some of which are disfiguring-- and risks of potentially fatal complications, the possibility of cure is sufficiently motivating for patients to undergo almost any horrors and humiliations. 

In my own experience, having been classified as incurable, then possibly curable, then incurable, I think that the risk/reward ratio of undergoing draconian treatments is quite different for the curable and the incurable. For the incurable, all cancer treatments are palliative. Speaking as an incurable, I doubt that I would choose to undergo many of these debilitating treatments in hope of extending life for some short period of time; and I have no intention of doing anything voluntarily to drag out active dying. "To suffer unnecessarily is masochistic rather than heroic." (Frankl, p. 136.)

For the incurable, the struggle may not be so much with cancer as with a medical establishment pushing in good faith, if sometimes mindlessly, the next treatment; as first one, then another treatment loses its efficacy. Fortunately, my medical oncologist seems to be honoring my decision to seek quality of remaining life rather than quantity of remaining life. 

Since my diagnosis and re-diagnosis as incurable, my struggle has been primarily with myself, not with cancer or the medical establishment. I must seek to use my remaining time wisely, to conduct myself appropriately, and to become a better person. If you read an obituary of me that says that I battled cancer bravely, you will know better.

Hiatus

Today, I had a regularly scheduled appointment at MSKCC to have blood tests and to be examined by Dr. Saltz and his associates. Then, if I were deemed to be in good enough shape to withstand another round of chemotherapy, I would go to MSKCC's chemotherapy suite. Although the blood tests indicated that my platelet count was at the borderline of being high enough for me to undergo another round of chemotherapy, Dr. Saltz decided for another reason not to proceed with the chemotherapy for at least a week.

Since early March, my belly has been growing more and more distended. It is now so large that the skin over it is stretched taunt-- like a woman's in her third trimester. Even though I have retained my sense of taste and a fairly good appetite, I can now eat only small meals because of the ensuing pain if I stretch my stomach more than minimally with food. I no longer exercise beyond taking walks of less than a mile, as the slight rotation of the torso that is part of each step generates both moderate internal pain and a shifting of the cloth of my shirt that irritates the hypersensitive skin over my belly. The reduced caloric intake and lack of exercise are causing me to lose muscle mass steadily, yet I am gradually gaining weight. Although the pain is not intense enough to interest me in pain medication, the only position in which I am now pain- free is sitting. Even my back hurts in other positions, presumably from supporting the big belly.

Dr.Saltz and his colleagues have not seen a similar case and have no idea why my belly is growing. They have scheduled me for more blood tests and a CAT scan and then for appointments on Tuesday, May 25, with Dr. Jarnagin, the surgeon who operated on my liver, and with Dr. Saltz.

There is nothing that I can do about this mysterious complication other than be practical. For the last few weeks, I have been relegated to wearing low-cut jeans. Consequently, I decided to send my clothes to my tailor with instructions to enlarge the waistbands of the trousers and the waists of the jackets to the maximum extent that there is spare cloth in each garment. I hope that some of them turn out to be wearable. With no chemotherapy, I may feel good enough this week to go somewhere that requires clothing more formal than jeans. 

Complaining

Because it is difficult to view one's own actions objectively, I may complain a lot more than I realize about my cancer-related physical sufferings. A great many cancer patients are enduring torments that are much worse than anything that I have experienced, and I assume that my own physical trials will continue to increase in severity. Thus, while I am far from stoic, I hope that I am not complaining much.

Economics 101

Recently, I was chatting with an economist and asked him what he thought about the U.S. dollar.

"I think it will be the world's reserve currency for a long, long time."

"Why are you so sure?"

"Because, we have the only thing that really counts."

"What's that?"

"The most nukes."

Misspent Youth

The Preakness Stakes, the second leg of racing's Triple Crown, was run today in Baltimore at Pimlico Racetrack. I have journeyed four times, though not in recent years, to that dilapidated facility-- known affectionately in its glory days, such as the era when Alfred Gywnn Vanderbilt was its president, as "Old Hilltop"--  to attend the Preakness. 

When I was a sophomore at Princeton, I won a daily double (i.e., I picked the winners of the first two races) at approximately 240-1 odds on a single bet at Pimlico on Preakness day, then followed up the next Saturday at another track with another big daily double on a single bet. Thereafter, I had a small following of freshmen who would cut class to take my bets to the tracks. Ah, misspent youth! 

Like most of us of a certain age, my powers of concentration are not what they were when I was an undergraduate. I made a single bet on the winner of today's Preakness, and I was lucky enough to win the exacta in the Preakness (i.e., I bet on the first two finishers in order) at 93-1 odds. Because I made two exacta bets, not one, the odds on my total exacta bet were cut in in half. As my bets on the Preakness were my only bets today, I did well: so well that I won back about half of what I lost betting on my own horses, Hot Money and Mustang Island, last week.

Aftershocks

The aftershocks of the financial crisis of 2008 are shattering complacency. Some of the pillars, or basic assumptions-- on which the civilization of the West in general and of the United States in particular currently rest-- look shaky. Among the pillars that never made sense to me that are now undergoing stress tests:

Sovereign debt of countries with mature economies, aging populations, and escalating social-welfare obligations is a sound investment;

Fiat currencies, subject to devaluation in order to stimulate exports or "repay" debt denominated in a debtor-nation's currency, are a storehouse of value;

The Euro, with no central fiscal authority and culturally limited mobility of labor, can survive sharply diverging member-country economic needs;

Governments have unlimited resources on which to draw to support domestic institutions and one another;

Because the dollar is the world's reserve currency, the United States is not constrained by the fiscal and monetary discipline required of all other nations;

The United States can conduct its foreign policy and military activities without fear of retribution within its own borders.

Eventually, it is reasonable to expect other pillars to undergo stress tests:

With a steadily declining percentage of world economic activity, the United States can continue to account for over half of the world's military expenditures;

The United States will not have to ration healthcare;

The social contracts that depend on working-age populations supporting retirees can survive declining birthrates;

With universal suffrage and largely uneducated populaces, democracies can make difficult decisions.

I have liked the world, with its convenient fictions, in which I have lived. I doubt that the reconfigured world will be nearly as privileged and comfortable for Americans like me. Nevertheless, I wish I were going to be around to see what happens.

Malcolm Gladwell

A friend brought to my attention an article by Malcolm Gladwell in the current (May 17) issue of The New Yorker, entitled "The Treatment: Why is it so difficult to develop drugs for cancer?"

The article uses Synta Pharmaceuticals as a case study.

 

Clearly, Gladwell appreciates the crudeness of extant cancer therapeutics and the difficulty of discovering new ones. My own reaction to his fine article is that we know a lot more about biology and cancer than we did even a few years ago, and we can't let ourselves get discouraged. We have to keep putting resources into basic research. And even though the classic venture capital model is broken, we have to find some way to keep financing small biotech companies like Synta (which is now publicly traded).

Urgency in Limbo

I am finding that my psychology evolves as my cancer progresses. Currently, constantly mindful that I am dying of cancer, I seem to be calmly accepting of my fate. Nevertheless, since being informed by Dr. Saltz that we are running out of cards to play, time has sped up for me again. Living in limbo, I have a newfound sense of urgency.

When I see a friend now, or watch on television an annual event like the Kentucky Derby, I am well aware that it may be for the last time. Although we renewed our subscription to our box at Saratoga-- there is a years'-long waiting list for those boxes-- for the race meeting from late July through Labor Day, we have not rented a place to stay in Saratoga.

Since my first CAT scan after my second surgery detected tumors in my liver, it has been clear that any additional treatments that I might receive would be palliative, rather than curative. Thus, the stakes were lowered. From then on, whether a particular chemotherapy were efficacious or not would not be a matter of life or death. (Awaiting test results, cancer patients who are in remission or still have hope of cure have a much harder time than I do.)

As I look at alternatives-- given that any treatments that I might undergo would be merely palliative and my willingness to trade quantity for quality of remaining life-- the final treatment that may make any sense for me to endure in order to try to extend my life is FOLFOX, the chemotherapy protocol that I am currently following. Consequently, I am quite concerned about my ability to tolerate FOLFOX and about its efficacy for my cancer.

Dr. Saltz will not know whether FOLFOX is shrinking my tumors until my next CAT scan, which has not yet been scheduled. By contrast, throughout each day and much of most nights, I am acutely aware of symptoms of my body's rebellions to being poisoned by the FOLFOX cocktail. Other complications from the poisoning have to be ascertained by medical testing.

Yesterday, in spite of my dosage of FOLFOX having been reduced by 20 percent, a blood test indicated that my platelet level has once again plummeted-- a rare response to FOLFOX, according to the literature. If my platelet level does not rebound significantly by this coming Tuesday, the 18th of May, I think that the best for which I can hope is that my next infusion of FOLFOX  will merely be delayed.

Meanwhile, I feel better today than I did yesterday. To avoid inconveniencing others, I am no longer scheduling social engagements. Nonetheless, I agreed on short notice to have lunch with a friend who is leaving town for the summer. Since that pleasant lunch-- at Raffaele, a neighborhood Italian restaurant-- I have felt even better. Moreover, I am having a fairly productive day. Though it is raining and unseasonably cold, I am joyful. 

 

Analgesic

Although I don't like to lose, I was content with Mustang Island's second-place finish in his race today as the 3-1 betting favorite in a field of 12. The race was at the same distance and over the same surface-- Belmont Park's inner turf course-- as Hot Money's race yesterday. Owing to a recent lack of rainfall, that course has been inordinately hard and fast; the last six sprint races over it, including Mustang Island's race today, have been won by the front runner.

Nevertheless, because Mustang Island is overly anxious to run, our trainer, Christophe Clement, instructed the jockey, Rajiv Maragh, not to go for the early lead, but rather to "cover up" Mustang Island behind and inside other horses. The idea was to teach still-inexperienced Mustang Island to relax in his races until the stretch run. Maragh rode to instructions, and Mustang Island ran well, even though he was not able to overcome the current course bias in favor of the front runner.

I had had a miserable night and day and did not make up my mind until mid-afternoon to go out to Belmont Park with Susan. During the hour or so that I spent with friends in the owners' boxes, visiting the paddock before the race, and watching the race, I felt no pain.

A Different Kind of Pain

For the last few days, I have not been very productive. I have been beset not only by fatigue and other  common reactions to chemotherapy, but also by relatively minor bone pain from Neulasta, a drug with which I am injected two days after undergoing chemotherapy, to counteract chemotherapy's suppression of my production of white blood cells. 

Nevertheless, my anticipation of Hot Money's return to the races has been steadily growing. For me, there could be few better antidotes to chemotherapy's poisons than to have a horse with Hot Money's talent win decisively, with the whole racing season in front of him. So I summoned my energy and went with Susan to Belmont Park to see him in the paddock and watch his race.

It was sunny and cool, with low humidity: perfect weather for racing, or just about anything else. The turf course was firm. Hot Money was calm in the paddock, fit without being lean, with a shiny summer coat-- just the way one would like to see one's horse at the beginning of a campaign! In a field of eight, he was the 8-5 betting favorite. 

After breaking alertly from the outside post position, Hot Money settled on the outside of the field, several lengths from the lead, as his rider, Majiv Maragh, assessed their unfolding position in the race. Nothing was opening up towards their inside. In order to avoid losing too much ground on the sweeping turn into the stretch, Maragh either had to pull Hot Money towards the back of the field or gun him towards the front. Maragh decided on the latter course of action, and Hot Money accelerated around the field, reaching the leader with a quarter of a mile to run in the six-furlong (i.e., three-quarters-of-a-mile) race. 

At that moment, I thought that Hot Money was going to draw away from the field and win in fine style; he had finished strongly in his morning works and his winning races. But his momentum faded, and he finished fourth. Although he seemed to be fine afterwards, it often takes a few days after a race for problems to manifest themselves. 

Despite my skepticism about rationalizing and excuses, there are plausible explanations for his tiring that have nothing to do with his health. Perhaps he wasn't as fit as we thought after his long layoff and simply got tired from a premature move in a fast-run race. Jockeys are convenient scapegoats for owners , trainers, and bettors, and one could be critical of Maragh's decision to unleash Hot Money so early in the race. In any case, as an antidote for my worries about my health, I will have worries about Hot Money's health until he wins again.

My hopes turn to Mustang Island's race tomorrow.

From Chemotherapy to Horse Racing

Yesterday, after reviewing my platelet levels and examining me, my medical oncologist, Dr. Leonard Saltz, recommended that I undergo another infusion of the chemotherapy cocktail called "FOLFOX." He said that he thought from his examination that the first two cycles of treatment with FOLFOX might be shrinking my tumors. I accepted his recommendation and commenced the third cycle of treatment.

If I feel well enough, I will go out to Belmont Park on Long Island: on Friday, to watch Hot Money run in the sixth race; and on Saturday, to watch Mustang Island in the 10th race. Based on Hot Money's performances on the turf to date (two wins in his first three tries and favored at $0.95 to $1.00 in his third start, in which he cracked a splint bone) and the apparent quality of his opposition, he will probably be favored to win. Although he has been away from the races for a long time, his trainer, Christophe Clement, is renowned amongst bettors for having his horses ready to run after long layoffs.

Mustang Island's prospects on Saturday are more difficult to assess. He is a little behind Hot Money in coming to hand this spring. Unlike Hot Money, he is still shedding his winter coat, and he has had one or two fewer works than Hot Money. The talent of the competition in Mustang Island's race is more difficult to assess, and Mustang Island has never before been asked to sprint on the turf. He won last year at the distance of 1 1/16 th miles in his only race on the turf. In that race, he was rank and fought with his jockey; we are hoping that in a six-furlong race, which will have a faster pace, Mustang Island will settle under light restraint behind the early leaders. Like Hot Money, he will be ridden by Majiv Maragh, a talented young jockey. 

I think that the probable favorite in Mustang island's race will be Onzain, which belongs to a friend of mine, Bill Punk. As owners and trainers say about their friends' horses, if I can't win it, I hope Bill does!

Mortality and Immortality

I think a lot about the dying process, and I fear it greatly. I do not dwell on thoughts of being dead, except for its effect on my family. Since I was a small child, I have equated being dead with nothingness.

With respect to physical and spiritual mortality and immortality, we humans differ from, for example, most if not all other mammals in our acute knowledge of our mortality. This great awareness of the life cycle does nothing to free us from it. We are conceived; we are born; we live for a time, during which we may reproduce and nurture offspring; and we die. I do not believe that, other than through genetic contribution to progeny, there is literal life after death for us or for other forms of life. (A species of jellyfish has, however, evolved to biological immortality.)

We human beings have unique power, through our big brains and technology, to affect planet earth and all forms of life that it supports, long after our individual lives cease. Unfortunately, it is easier for a human being to wreak long-lasting damage than to create long-lasting good. 

Eventually, both the human species and our planet will cease to exist. Thus, immortality seems to me to be a meaningful concept only if defined oxymoronically as having temporal limits coterminous with the survival of planet earth or with the human species. 

Our ideas may achieve immortality-- if not ascribable, then through their own DNA. Ideas interact with other ideas that give birth to other ideas, and so on. Hunting, toolmaking, know-how, language, oral tradition, music, farming, literature, religion, superstition, war, politics, science, teaching, law, technology, medicine, art, architecture, trade, business, finance, design, games, and all other human endeavors are based on, develop, and amplify ideas. Thus, in any human invention or innovation, there is potential immortality.

I do not believe that "things happen for a reason," or that a personal God has a plan for each of us, or indeed for the human species. I do not find any meaning in my cancer, other than as an ordeal that I hope spurred me to grow during my remaining life. Although I allow for the possibility of free will, I think that our individual fates are largely determined by randomness: It is good to be lucky, as I have been in so many ways in my life.

I am 67 years old. In another 67 years, there will be at most a few people who knew and remember me. In 500 years, like all but a handful of my 6.8 billion living brethren, I will be traceable, if at all, only in genetic material and/or genealogical records. Nevertheless, like any of my fellow humans, my fleeting mortality may leave in its wake contrails of immortality, however untraceable and dilute.