Dad kept a record of his various cancers and his thoughts and feeling during treatment. This is that record. – Bart
The Kessler male family history is early death from heart disease or heart attacks. There is to my knowledge no history of cancer of any kind, male or female, on either side of my family. My father died at age 48 of coronary artery disease after a 12-year struggle for survival. He did not survive experimental surgery. His father before him died of a sudden heart attack at age 63, alive one second, dead the next. My maternal grandfather died of heart disease in his early 40’s.
It came as a surprise therefore in late 1993, at age 60, when my first PSA was a “high normal” of 4.0. My internist said: “It bears watching.” By early 1994 the PSA went to 5+ and I had my first biopsy done. The results were negative in about 12 to 16 samples. By May the PSA had risen to 8+, and the second biopsy was positive.
The Gleason score was 3 and 3 ( a fact I learned only this year), and the doctors encouraged me to get second and third opinions as to the course of treatment I would pursue. No one seemed particularly rushed. My reaction was shock. I remember asking myself the question whether I would have been less upset if I had been told I had heart disease. I had watched my father in law die a slow, agonizing, painful death of prostate cancer, with all sorts of complications, including 5 fistulas and 2 colostomy bags for a number of years. Like my own father, he had suffered essentially in silence, stoically, without complaint. These were two men much to be admired for many virtues, dying with dignity, grace and courage being among them.
Susan and I discussed the options open to me with my urologist in Reading, her radiology/oncologist at Hahneman Hospital in Philadelphia, a urologist pioneering in radiation seed treatment in North Jersey, a urologist at Sloan-Kettering in New York, and telephone interviews with people in Seattle and Pittsburgh doing freezing treatments. It was in discussion with Dr. Luther Brady, a world-renowned radiologist in Philadelphia that I remember first considering the question of my mortality. I may have mentioned this in an earlier medical bulletin. Brady got my age, 61, and said; ”If you didn’t have any disease, your life expectancy is 18.1 years. If you have surgery, the expectancy span is 16.4 years, and if you have radiation, it is 16.1 years.” My reaction came on the first count. “My God, I’m playing in the fourth quarter of the game of life.” I had known from the start that no one gets out of this world alive; we’re all somewhere on the same road, going to the same end, but somehow hearing 18.1 years gave everything in life a new perspective and a new urgency, and I didn’t like what I heard.
It is impossible for me to relate what follows with diseases, treatments, options, and the like without commenting on subjects philosophical and theological. Every decision and consideration revolves around the most serious questions of life and death, quality of life, and how one conducts himself with his loved ones and friends in the face of these most grave issues. My quest, if you will, since May of 1994 has been to find a comfortable, satisfactory way to deal with these issues. The plot has, so to speak, thickened quite a bit, but it has, at the same time, become clearer in many ways. I will tell you what medical decisions were made, when and how they were made, what the results have been so far, and what progress I have made in getting a perspective on the entire situation, i.e. dealing with my mortality and the uncertain time for life that is left for me on this earth.
I began by dealing with Dr. Brady’s life expectancy statements in a baseball analogy. I arbitrarily decided on this approach since I was an active baseball player in my first 44 years of life. Baseball, unlike other sports, has no set time limits. You play until the home team has had its last at bats, and as long as there is one out remaining, there is hope that the game can be pulled out, no matter how far behind you are. I have been in a 10 run rally with two outs in extra innings. It is a strange and wonderful game. I have participated in meetings where the vote was 10 to 1 against a project at the start, but after hours of work and debate, the vote turned to 11 to 0 for the project, and, best of all, the project worked. We built and paid for a new Synagogue in Pottstown when no one gave it a chance. I have formed a business organization for the development and promotion of a downtown business group with a $50,000 collected budget from a Chamber of Commerce merchant group that could not collect the $7,500 salary they were paying a so called director. I have lost ball games and failed at projects too. In 1951 I played on a PA State Championship American Legion team as one of two outsiders who joined the Pottstown High School team that won 51or 54 straight games and is in the Baseball Hall of Fame in Cooperstown. That same summer I played on an industrial league team that was 0 and 16. Life for me is a baseball game. I have three different forms of cancer, I’m a bit behind in the score at the moment, but the game is not over, the lights are on, and I still have some at bats left.
In July of 1994 I decided on surgery to remove the prostate. If I could get most of the cancer out of me, that was what I wanted. I went for a nerve sparing operation on August 1st. I remember as I was wheeled into the operating room looking skyward and asking for help. They say there are no atheists in foxholes in the middle of a battle. I am no atheist, perhaps not even an agnostic, but I cannot fully accept all the religious concepts of faith in an all-knowing, all-seeing god. But this was the start of a battle. I prayed for help. As the doctor leaned over me to start the anesthesia I said: “A doctor named Hawkeye can’t be all bad.”
I awoke about 7 hours later after what seemed like an instant to me. I think that the ‘instant’ was really the equivalent of death. I don’t want to die, but I am no longer afraid of death. Death seems fairly easy. Dying with dignity and grace takes more. Living is tough. Yogi Berra was half-right. “It ain’t over till it’s over,” but when it’s over, it is over. You’ve heard (or read) my quoting the line of Joe Louis before a fight when asked if he didn’t know that some time someone was going to knock him out of the ring and take the title, ”Yes, sometime, but not this guy, and not tonight.” Some day it will be over for me, but not from one of these cancers, and not now. It is the only way I know how to fight these diseases, with some humor thrown in too. Yes, the anesthesiologist, head of the department at Reading Hospital, was nicknamed Hawkeye, and that moment was the first time I had met him. Several doctors have told me, “You’ll die with prostate cancer, not of it.” The colon cancer they say they’re going to cure. I expect to hold them to both prognoses. If cancer recurs, it is just in the ebb and flow of the game. I’ve only lost the no hitter and the shutout, but the game is not over. Best of all, I am the home team and get the last at bats. I have told all the doctors involved that while I know they can’t give me any guarantees I expect a minimum of ten more years.
The prostate operation was successful to a point. The tumor removed had a Gleason of almost 8. It was defined at the time as “moderately differentiated”, the middle ground between “clearly defined”, which is least aggressive, and “undefined” which is the worst, most aggressive form of PC. The cancer was confined to the prostate and the seminal vesicles. It was not in the lymph nodes, but it had escaped the capsule. I was in the hospital about 6 days and then came home with a catheter to begin recuperation. The last two days in the hospital I had some pain in my right side, which I thought was caused by sleeping at an odd angle in a recliner. After about eight hours at home the first day, I began to experience more and more severe pain in the side, and to avoid that pain my breathing became more and more shallow. By about 9 PM I began to feel as if I needed serious help breathing or I was going to die. We rushed back to Reading Hospital where I was diagnosed with a blood clot in the right lung. Seven days later I came home on a Cumadin regimen, which continued for the next six months. The urologist told me these things either “kill you in the first five minutes, or you recover from them.” As you know, I had another one about a month after the colon surgery. They tell me that they will put me on Cumadin for about six months immediately after the restorative surgery in August to prevent another one. My experience following surgeries, and the fact that cancer patients form blood clots in general more frequently than non cancer people is one more thing to consider in the grand scheme of things. I will be conservative and do all that prudently should be done and then not worry about it. Worry won’t advance the cause one iota and in fact could be harmful.
In October following the prostate surgery, my urologist suggested that I should consider radiation treatments. I hit the roof since I had had surgery to avoid radiation in the first place. However, by January my PSA, which had gone to 0 after surgery, started to rise again. Because the cancer had escaped the capsule, it was considered state of the art in early 1995 to follow up with radiation of the area of the prostate bed. I had 34 treatments from Dr. Brady at his Norristown office, about an hour and fifteen minutes drive from Lancaster. My only reaction to the treatments was to feel deadly tired after each treatment. Driving home was a challenge to stay awake on the road. Treatments, as you probably know, are given daily Monday through Friday for about 7 weeks. After the treatments, my PSA went down to 0 again and stayed down for about 2 years.
Sometime during this “off period” of prostate cancer, I went to see a dermatologist about various spots on my face and neck. In the next 2 + years I had about 14 of these things burned on cut off my face and neck. Each one was tested for skin cancer. One of them was cancerous and was surgically removed in the hospital by an excellent 40-year-old surgeon whose mother decorated his office in frilly Early American décor. This is relevant only because I asked him to give me a scar, preferably in the form of a Z, which I could claim came from a duel with a jealous husband. He was so insulted and put off at the suggestion that I had to have the dermatologist call him again and convince him to do the surgery. I do not suffer self-impressed egotists very well, even when they are most competent professionals. The dermatologist in Reading is excellent, a professor at Penn Medical School, but he too has a bit of a Napoleon complex, and I enjoy needling him a little. I have to date had 17 items removed from my face and neck. Apparently all that time playing baseball in the sun took its toll. They want to give me a treatment which will for 6 to 8 weeks give me a face that makes the worst case of teenage acne you ever saw look mild, but which will likely eliminate the need for further burnings, freezings, and cuttings to remove spots. Frankly, as long a Medicare and the Blues pay for the spot removals, I think I will pass up another opportunity to make my daily existence a special hell for a couple of months.
About three years ago my PSA started to rise about 0.5 every 90 days. I made the decision to try a combination of Eulyxen and Proscar, a protocol which had had success with a doctor in Iowa or some mid western state. My PSA had reached nearly 6 when I started, and within a month it was down to less than 1.0. I had been told that hormonal therapy “generally lasts anywhere from 18 to 36 months on average, although I (the urologist) have had one man on it for a little over 20 years.” I opted for this modified hormonal treatment because I could take the more radical Lupron injections if this did not work. It worked for over 2 years while my PSA remained around 1.0. There are differences of opinion on these various protocols. Some insist that the triple cocktail of Lupron, coupled with the regimen I took, is the best. My urologist and my oncologist seem to think that I still have Lupron as “an ace of trump” up my sleeve. There is even a respected school of thought that says hormonal treatment should not be started until there is some evidence of recurrence and spread of PC other than simply a rising PSA. They feel full hormonal treatment is just as effective at that point as it is earlier. I come down in the middle between these two options. I would rather have hormones fight cancer cells before they swamp me. I like knowing that there are other options and treatments open to me. As long as I have choices, even if they are long shots, I feel better than going all out on the last choice available. In this field especially, where there are almost daily trials and discoveries hopefully advancing treatment and cure, I do not want to run out of choices.
Last summer the PSA started to rise again at a slowly increasing rate. The decision was made in November to change from Eulyxen to Casodex to see if that similar drug would have a better effect. The plan was to move to Lupron within 6 to 8 months depending on the PSA. On the way to prostate cancer treatment changes, colon cancer stepped in to complicate things. In May I had a regularly scheduled sigmoidoscopy. The one I had three years earlier was so good that the doctor giving it announced “you don’t even look as if you have had radiation treatments.” Before this one, I mentioned that I had a narrowing of my stool on some occasions and that there was occasional blood in them. Blood was not a new thing. I have had hemorrhoids over the years and a little blood was not unusual. Following the exam, the doctor noted that I “might find a little blood in the stool again as a result of the instrument of the exam, but that there was no evidence of any problem areas whatsoever.” When I asked the urologist why the change, he commented in a rather colorful way that radiation causes long term premature aging of tissue, in short, “while you are only 67, you have an 80 year old asshole.”
I made the mistake of breathing a sigh of relief and did not insist on a full colonoscopy. The doctor who did the sigmoidoscopy also made a mistake by not even suggesting that I have one. He may have taken the attitude that insurance would not pay for that exam since there was no definite indication of its need. He may simply have been less than competent. No doubt about me. I was foolishly naïve. Another thing I have learned along the way is that people with one form of cancer are somewhat prone to getting another primary cancer, not just a spread of the one they have. Had I insisted on the exam in May, I might well have avoided the emergency surgery on December 12th when my intestine was completely blocked by the tumor, resulting in the colostomy bag I will wear until restoration on August 29th.
That bag arrangement has been alternately disgusting, annoying, limiting, and fascinating. Twenty years ago I might well have died from the blockage or from an infection caused by the inability to do something like the colostomy. I had a visiting nurse for about 3 weeks after surgery come and change the seals and ultimately teach me how to do it myself. There are now only 31 more days till it is gone, but who’s counting.
Again in February I got my second pulmonary embolism, this time in my left lung. While the symptoms were almost the same as in 1994, there was one big difference, which made diagnosis more difficult. Instead of steadily more difficult breathing following the onset of symptoms, my breathing and discomfort grew slowly less of a problem. It took three days and great persistence on my part with the hematology oncologist to get the last test, which confirmed the problem. Ultimately, I had to risk telling the man who was treating me with chemo, etc. that “while I come to you because you are a good doctor, you are not God. I know this is an embolism; keep looking.” To his credit, he was not insulted, kept looking, and did find it. Then on to another 8 days in Reading Hospital, and 42 sticks for blood, later, they again sent me home on a Cumadin regimen. This time, however, I have to have my blood tested weekly, and they keep changing the dosage at about the same rate.
Since the end of January I have had 18 chemo treatments of the 20 total prescribed for the colon cancer. I am on Leukavoran and FU-5, the standard infusions of the last 30 years, plus CPT-11, the only new infusion drug in the last 40 years for colon cancer. Supposedly, after surgery to remove a colon cancer tumor, the odds of survival for 5 years are 50%.. With the old standard chemo added, the percentage goes up to 60/70%.. It is the hope that with CPT-11 as well, the odds tip more in my favor by another 10% to 20%. I had an old Hill School classmate who went on the same regimen I am on following his surgery, and he was dead in 2 years anyway. I am sorry for Elliott Vaughan; I will miss him, but I’m sort of hoping he is the one in that 10% category for whom none of the treatments are effective for 5 years, and there is no need to add me into the mix to make up that 10%. We’ll take what comes and deal with it as best we can.
I say “we” because there is no way I would be holding up as I am “without the love and support of the woman I love.” It may sound like King Edward referring to Mrs. Simpson, but in my case it is definitely so. Susan has led, cajoled, threatened, and everything else she can think of to get me onto a cancer-fighting diet. She has never faltered for a second to get me to help myself. This is a big war we are in, and it takes the help of many to get through it successfully.
I mentioned at the top of this report that my biggest struggle has been to get a healthy perspective on the combined problems. While I hope that after 7 years of one cancer after another I might enjoy the biblical 7 fat years of good health, the odds are at my age that one problem will simply replace another, and the fight will go on. I have found that my biggest relief comes from sharing feelings, ideas, treatment protocols, and the like with others in the same or similar trouble. When I joined US TOO’s support group, I had no idea what support really was. I thought somehow that I was going to get something by merely being receptive to others. I have found out in the past 6 months or so that support for me comes not in being receptive as much as it does from being giving. It is really very self-serving on my part to take a leadership role in reforming the US TOO Lancaster Chapter. By working with others in the group and concentrating on developing a great chapter, my time is spent much more constructively than it otherwise would be. There are times, to be sure, when I am down mentally, or feel lousy physically from the treatments and lack of restful sleep, or desperately want some food not on my list, but there is always an email or a phone call or a meeting deadline that has to be met to pull me back into a positive posture. There is always the encouragement from family, friends, and support group members who have made me believe that the good they expect from me I really can achieve. At least I can try.
The game goes on, and I came to play through to the final out.