A few weeks ago, on Friday April 13, I saw my usual doctor for my annual physical. The exam went well until that final phase, for men, the digital rectal examination. Instead of saying, as I expected, “that is fine too” Dr. C said something like “hmm, that is not quite right, you should see a urologist.” He suggested that I see a friend of his, Dr. B, and I was able to get an appointment sooner than I thought, on Monday April 16.
This was my first visit to a urologist, or perhaps I should say first visit for myself, because there is something quite different about answering questions about your own problems than hearing your parents answer such questions. The key moment of the visit was the digital rectal examination, which confirmed that there was something suspicious, a lump on one side of the prostate. “We need,” said Dr. B, “to do a prostate biopsy, to see whether you have prostate cancer.”
I do not yet have much personal experience with cancer. None of my immediate family members—parents, siblings, wife, children—have suffered from cancer. Like everyone I know people who have died of cancer—including my friend John Palenberg, who died of brain cancer a few years ago. And like many people I have read about death and dying and cancer. Indeed, I have a number of such books on my kindle account, and I have been known to read a few pages on my cell phone while sitting with one or the other of my parents in hospital waiting rooms. So, when the doctors told me that I might have cancer, and then a few weeks later when they said that I do have cancer, I thought immediately of books.
First and foremost, I thought of The Death of Ivan Ilyich by Leo Tolstoy. The narrator of this short story, Ivan Ilyich, is a respected lawyer and judge, who suffers from a mysterious illness, and eventually dies. Like all of us, Ivan Ilyich knows that people die, but he is shocked when he realizes that he himself is dying. In one memorable passage Tolstoy writes:
The syllogism he had learnt . . . “Caius is a man, men are mortal, therefore Caius is mortal,” had always seemed to him correct as applied to Caius, but certainly not as applied to himself. That Caius – man in the abstract – was mortal, was perfectly correct, but he was not Caius, not an abstract man, but a creature quite, quite separate from all others. He had been little Vanya, with a mamma and a papa, with Mitya and Volodya, with the toys, a coachman and a nurse, afterwards with Katenka and will all the joys, griefs, and delights of childhood, boyhood, and youth. What did Caius know of the smell of that striped leather ball Vanya had been so fond of? Had Caius kissed his mother’s hand like that, and did the silk of her dress rustle so for Caius? Had he rioted like that at school when the pastry was bad? Had Caius been in love like that? Could Caius preside at a session as he did? “Caius really was mortal, and it was right for him to die; but for me, little Vanya, Ivan Ilyich, with all my thoughts and emotions, it’s altogether a different matter. It cannot be that I ought to die. That would be too terrible.”
That, I fear, has been my attitude as well. I have known that all men are mortal, that all men die, but until recent weeks I have not really thought that I was mortal. Or perhaps a better way of putting it is that I thought I was mortal but that I had years and years left to live, and now I face the possibility that I have only a few years to live. But I am getting ahead of my medical story.
Before leaving the doctor’s office on April 16 I set up an appointment for a prostate biopsy on May 3. Two weeks might seem like a long delay, but prostate cancer is generally slow moving, and so doctors do not treat it like brain cancer; they do not rush the patient into the operating room as they did with my friend John Palenberg.
A prostate biopsy is a simple procedure; using a needle the doctor takes a few samples of your prostate tissue. But it is not painless. Even with local anesthetic, you can feel the needle being injected into your prostate; it is a bit like having a staple sent into that part of your body with a staple gun. And the part of the body we are talking about is pretty sensitive, sitting there between your anus and your penis, right next to your bladder, with the urethra carrying urine passing right through the prostate.
As I left Dr. B’s office they warned me that I would see blood in my urine, and indeed for the next day or two my urine was almost beet red. They also warned me that it was possible to have an infection; indeed because of this risk one starts taking antibiotics a day or two before the biopsy, and continues for several days after the biopsy. The next day, a Friday, I started to feel weak and feverish in the late afternoon. I called the doctor’s office but (not surprisingly given the hour) did not hear back. At about eight pm, feeling like something was definitely wrong, I had my wife drive me to the Hoag Emergency Room.
I have spent lots of time at the Hoag Emergency Room—with my father, my mother, even my daughter just after Christmas, when her doctor thought she had appendicitis. But this was my first visit there as a patient, and again, it is different. As a family member, you can and do “work the phone” to keep family members posted; as a patient, you lie in the bed and think grim thoughts. As a family member, you can and do leave the room from time to time, to go to the bathroom, to go the cafeteria, to go home if and when the patient is admitted. As a patient, you basically lie in bed, although they did let me once get up and shuffle to the bathroom.
Finally, at about midnight, after various blood tests, and an MRI test, the urologist on call arrived in my room. “You do not have an infection,” he pronounced. “If you did, you would be much much sicker than you are.” So, he sent me home, somewhat ashamed that I had troubled all the people, including especially my saintly wife, who was there with me the whole time.
The next Monday, May 6, I received a call from my general practitioner; the prostate biopsy was “positive” meaning that I do indeed have prostate cancer. The Gleason score was three plus four. This means that the most common cancerous pattern is grade three but there is also some grade four cancer present.
Both before and after receiving this report, I have been reading about prostate cancer. One of the great resources available is PubMed, a database of thousands of medical research articles. I learned from this and other sources that the most common Gleason score is three plus three, or six. Those are the low-grade cancers that are often treated, in older men, with “watchful waiting.” My Gleason score, three plus four, is also common, and somewhat more troubling, but not as troubling as a four plus three or four plus four score.
Later in the week, on May 10, I had a long visit with my urologist Dr. B. He gave me a copy of the pathologist’s report, which showed that the cancer seemed to be all on one side of my prostate. He discussed the main treatment options: surgery and radiation, their advantages, problems, side effects. Dr. B is himself a surgeon, who does many prostatectomies at Hoag Hospital, so we talked about that more than radiation, but he sent me to see a radiologist as well, to hear about that option in more detail. Overall, his advice was that with either option, I should have good chances of a long and reasonably similar life.
“Reasonably similar” does not mean “the same.” The two main side effects of prostate treatment, whether surgery or radiation, are urinary and sexual. With surgery, for example, for ten days after surgery one urinates through a catheter into a collection bag. When the catheter is removed, it generally takes weeks, but sometimes months or years, to retain control of urination. One wears a diaper or pad, and one’s progress in this process is measured by how often one “wets the pad” while getting up from a chair.
On the sexual side, both surgery and radiation make it difficult to have and keep an erection. And the surgery removes the prostate, so that one does not ejaculate. Again, with time, and with drugs, and with luck, one usually regains the ability to have and keep an erection. But it is clear, from what I have read, that nothing will ever be the same.
My wife says, quite rightly, that it is more important to live than to have sex. And it is more important to live than to have complete control of one’s urination; there are lots of older people who live in and with adult diapers. But part of what has kept me awake at night, thinking and fretting, is the thought that I “will not be a man” after prostate surgery. There is something manly about being able to whip out one’s penis and urinate by the side of the road. There is something manly about being able to get an erection and ejaculate a strong stream of semen. Both processes will be different, and in one sense (ejaculation) impossible after prostate surgery. There is a loss here, perhaps like the grief that women suffer as they lose their breasts to breast cancer, that is hard to describe but nevertheless real.
There is another side effect, of concern to me but not many others—cycling. I have been a pretty serious cyclist for decades; I have taken some long cycling trips, including a great trip from Seattle to Los Angeles. A few years back my brother and I spent a day and cycled from sea level to the top of Haleakala in Hawaii. I have always planned to do more cycling, perhaps to cycle across America. But the prostate sits right where the body meets the bicycle seat, and it seems that I will not ride my bicycle for at least six months after surgery. I should be able to ride thereafter, but how long? How hard?
Back to my medical story. On May 17, I had a first visit with my radiation oncologist. By this time, I was leaning towards surgery, rather than radiation, as my first step in fighting my prostate cancer, so I went to this appointment somewhat skeptically. But I was very impressed, very pleased, with Dr. K, who was thorough, thoughtful, informative. He explained how radiation has improved in recent years, how it is possible to target the prostate more precisely, to protect the rectum through insulation. He also suggested another test, a genetic test on the pattern of the prostate cancer, called the Decipher test. This test could be done without further biopsy; it would simply require sending “the slides” from the biopsy to the company in San Diego. I asked Dr. K to order the Decipher test.
When I returned home on May 17, and for a few days thereafter, I did some reading about Decipher tests. Basically, the test involves looking at the genetic sequence of one patient’s prostate cancer and comparing it mathematically to thousands of other prostate cancer genetic sequences. For many of these thousands of other patients, the company has further information: whether their prostate cancer recurred after prostate surgery; whether and when they died of metastatic prostate cancer. The question the Decipher test asks is: does your prostate cancer genetic sequence look like the sequences of those who have had aggressive or fatal cancer? Or does it look like the sequences of those who have had the (far more common) slow-moving and essentially benign cancer?
(I realize that benign cancer is a contradiction in terms; no cancer is benign. But prostate cancer is often essentially benign, not causing any pain or other systems, not leaving the prostate, and that is why it is so often treated, especially in older men, with watchful waiting.)
On June 4, as I was packing my bags to go to England and Scotland the next day, I had a call from Dr. K’s office. He had received the results of the Decipher test; could I come to the office that afternoon or the next morning? I went early the next morning, June 5, and received the results, which were about as bad as they could be.
On a scale from zero to one hundred, with zero being the most passive prostate cancer, and 100 being the most aggressive, mine ranks at 88. In other words, my prostate cancer is more aggressive than 87% of all prostate cancers. In my youth, on the SAT and other tests, I strived for a 99, and sometimes achieved that high level. Perhaps this is fate’s way of punishing me for that, giving me an 88 when I want to have a ten.
And there was more: the Decipher test estimates that if I have prostate surgery but no other treatment—which would be the usual course based on my Gleason score and other factors—I would have a 41% chance of metastasis within five years of the surgery. And based on this, Decipher estimates 27% chance of prostate cancer specific mortality within ten years after surgery.
As Dr. K and I discussed that morning, and I have reflected since, these are not good numbers. They are not as bad as the numbers that many face when they learn they have cancer—my friend John Palenberg was told that he had a few months to live—and he died within three months. But my Decipher results suggest that my life will be shorter than I believed before this all started—when I believed that I would live to be at least as old as my father, now 85, and believed that I would still be running races and cycling into my eighties.
Dr. K’s advice was that I should have prostate surgery and then follow up with radiation and perhaps even hormone therapy. Hormone therapy, I gather from my reading, is basically chemical castration; not a pleasant prospect, but prostate cancer generally but not always needs testosterone to grow, so that if you can eliminate testosterone from the body you can deprive the cancer of an essential element.
In the hours between my visit with Dr. K and getting on the plane to London later on that same day, I made several appointments, including one for a radical robotic prostatectomy (the full name of the procedure) for Monday July 2.
By and large, I was able to think about other things while in England and Scotland; I did not lie awake, much, thinking about my prostate. But I did reread another book that I commend, my friend Susan Stabile’s book, Growing in Love and Wisdom. Susan, who is now a serious Christian, spent a few years as a Buddhist nun. Indeed, I was there as she set off on this quest, tottering down the steep driveway of our apartment building in Hong Kong, bearing a heavy back pack as she set off for a few months in Thailand. Her book is a set of Buddhist meditations adapted for Christian readers, of which I think the most powerful is on death. She writes in part:
“Visualize your life as a lighted candle, burning steadily down. Each breath you take brings you closer to death. Each hour that passes is one fewer of life. Each day that passes brings your death a day closer. As you consider the passing days, watch the candle get smaller and smaller.” Moreover, as she writes, “while death is certain, it is not certain when you will die. Our life span is unknown to us. Some people wake up in the morning and are dead by that afternoon. Some go to bed, having set their alarm clock and expecting to rise the next morning, and die in their sleep. Some people live to be ninety-four, others die at birth or in childhood. Often, there is no warning at all that the time of death has arrived.”
The point of this, Susan writes, is not to get gloomy, but to focus on what is important. Friends and relatives, possession and riches, beauty and strength—all of them are useless at the end of life. “There is only one source of help at death: God. What we do in our life to grow spiritually, to grow in discipleship and deep our relationship with God is the only thing that will enable us to face death with joy and confidence, knowing that physical death is a doorway into a deeper and permanent union with God.”
Leo Tolstoy preached much the same message as Susan Stabile on this. In his last hours Ivan Ilyich realizes that his life (with wealth, power, possessions) has really been pretty pointless. “This is wrong, it is not as it should be. All that you have lived for and still live for is falsehood and deception, hiding life and death from you.” With his last strength Ivan Ilyich tells his wife and young son that he is sorry for them, and asks their forgiveness. “And suddenly it became clear to him that what had been oppressing him and would not leave him was all dropping away at once from two sides, from ten sides, from all sides.” What Ivan Ilyich perceives at the end is not pain, but light.
To return to my one tale: we returned from Europe on June 22 and on Monday morning July 2, my wife drove me to the hospital and I checked in for surgery. I had brief conversations with both Dr. Bae and the anesthesia doctor, who said that with my low resting heart rate (about 45) I was perhaps the healthiest person heading towards surgery that morning. The last thing I remember is teasing the doctor about the way in which he was driving my hospital beds through the corridors towards the operating room; I did not see the operating room, at all.
I was in the operating room for about four hours and in the recovery room for two hours. The first thing I remember is just as they were preparing to wheel me out of the recovery room up to a bedroom. My wife said that Dr. Bae said that the surgery had gone well.
As I gradually wakened on that first day, there were some surprises. I knew that I would have a catheter in my penis, and have IV fluids and antibiotics. One thing I did not expect, however, was that I also had a surgical drain; a tube emerging from my stomach draining blood and other fluids into a small bulb. Every so often the nurse would drain and measure the fluid, as she drained and measured the urine.
I also did not anticipate that I would be on a clear liquid diet for quite so long. By evening time, I was hungry; I had not eaten the day before, getting ready for the surgery on a Gatorade diet. But “dinner” consisted of clear chicken broth, clear beef broth, jello and lemon sorbet.
And I did not anticipate that I would have quite such a large tight surgical dressing. It is as if someone wrapped my belly in Saran wrap, good and tight. It makes it hard to breathe deeply, it hurts when I cough, which I try not to do.
I spent only one night in the hospital, and it was a pretty good night. They had me on IV pain medication, so I was not in much pain, and the nurses coordinated their visits, so that when one came to take my blood pressure, the other came to give me my pills. The aide helped me to “walk around the hall” once or twice, holding on to my IV pool as a sort of rolling support.
The next day, about noon time, Dr. B removed the surgical drain (“this will hurt,” he said, and it did) and cleared me to go home. My wife arrived with clothes but then nothing happened for two hours and more. The nurses reported that although Dr. B had spoken with me he had not typed up the written instructions and, without written instructions, they could not release me. Finally, Masami left to check on our dog Cali, who had been feeling poorly earlier in the day.
Just as the nurses were clearing me to go home, I had several frantic calls from Masami. The dog was very sick, vomiting and having diarrhea, she was going to take the dog to the emergency vet, what was the address and phone number of the emergency vet? Never mind she had found the address and phone number, she was on her way there, I would have to get home on my own. Fortunately, my parents still have their personal care team, and I called Maria, who was able to come to the hospital, drive me home, drive to the pharmacy to pick up the prescribed pain pills. Fortunately, the dog survived, but she had to remain at the emergency vet two nights, on IV fluids, having multiple tests.
I have the pain pills, but I did not use them; the doctors had warned that they would worsen my post-surgery constipation, so I started a regime of taking two Tylenol tablets every six hours, the maximum dosage per the label. I was able to get by on that, to sleep reasonably well, and to reduce the dosage to one pill every six hours after two days. I am now able to walk pretty well, including out around the neighborhood.
Today is Monday July 9, one week from surgery, and I am still at home, still recovering. I have an appointment to have the catheter and dressing removed on July 12, a date that cannot come too soon. And at that same time, I hope, I will receive the pathology report on the removed prostate, learn whether the tumor is still graded “three plus four,” learn whether there are “positive margins” and other important indicia of the cancer’s plans. I face some decisions, soon, about whether to have radiation therapy and hormone therapy.
My resolution, as I face cancer, is to live life better. To spend more time walking the dog, talking with friends and family, praying to God. I also intend to travel more; I hope by next summer to be strong enough to do more walking in Europe. I realize that in some sense these plans are inconsistent—one does not need to go to Europe to pray more often. But I am not aiming for sainthood.
For those readers who are keen to read my next book: I do hope to write and publish my biography of Salmon Portland Chase. But I am also going to have to allow time for cancer, and that may take more time than I anticipate. And so I have to say, about Salmon Chase and many other plans, Deo Volente. God willing.