It has been suggested that I write, as accurately as I can, my experiences with bladder and kidney cancer over a twenty year plus period, and describe how it affected my life and attitudes. For a reader to evaluate whatever comes from this effort certain things about me are pertinent. I truly believe I have lived a magical life. Why that is so I cannot explain, but there have been too many occurrences when my life could have gone wrong and did not, for me to think otherwise. My wife and I mention often that we have never known major tragedy in our sixty years of marriage, and we wonder how we will handle it when real tragedy occurs. By major tragedy we mean loss of a child or a grandchild, or a family member who "lost it" as a result of the tempting influences of peer pressure these days. We have so many friends and acquaintances who have lost children to drugs, suicide or seeming inability to make it alone, that we view our own happy and successful lives as remarkable. We both have had several major surgeries, but they do not count in what we describe as a major tragedy. Undoubtedly my upbringing in a family where Bible reading was a daily occurrence, where Sunday was a spiritual day, and where such maxims as "God will never call on you to do things you cannot do, but He may test you to the limit of your ability" and "remember the two bears; to bear and to forebear" were told me by my parents on an almost daily basis.
My Father died of WWI related health problems when I was eight years old and I was raised by my Mother, her Sister, and her Mother. I had a brother two years younger (now deceased from kidney cancer) and after my Father’s death it was made clear to me that now I was "the man of the House", and with that came new responsibilities and loyalties. As I think back on that responsibility, it robbed me of some of the carefree attitudes of a young boy. I felt always that I could do no wrong for it would set a bad example. I am not sure such heavy responsibility is necessary at so young an age. American culture then ( I was born in 1920) did not contain the constant barrage of earthy information now seen daily on television and in movies. The culture was orderly and much less prone to accept that "freedom" was defined as the right to do or say whatever any individual wished, regardless of its impact on the rest of society. Such words as "refinement", "dignity", "proper", "obligation" had clear meanings which affected the ways human beings regarded each other. There was a mild form of bigotry in that view, but also a form of social discipline that made one feel "outside" the norm if the conduct such words inferred was violated. Add to this that the arrival of WWII made my decisions after college easy ones. I had none of the hesitancy, or wonder, or uncertainty so easy to recognize in young people today. I was going to war, as were all my contemporaries. To my already firm conceptual framework of personal obligation were added the duty, honor, patriotism of the military culture. Make no mistake about it, these philosophical tools of individual responsibility, at times spelled "guilt" for whatever happened, and a strong Christian belief that life’s purpose is to help others before you help yourself, create powerful ammunition for dealing with any adversity life has to offer. They shield you from making the mistake, so prevalent in our culture today, of feeling mistakes and disappointments must be caused by someone or something else and could not possibly be your fault. That ability to shield oneself from error and adversity by blaming others, causes more loss of face, and loss of opportunity than anything else I can imagine in our culture today.
We are responsible for what happens to us. If we believe strongly enough that there is Spiritual help beyond our own ability to aid in handling the tough times, we can accomplish much. Personal attitudes about such things are an immense strength in times of sickness and uncertainty.
I did reasonably well in high school and college, honor grades most of the time, but I was surely not one of those "straight "A" students. History and math seemed to be favorite subjects, Latin a bore and difficult. Sports were baseball and swimming. During my Junior year in college, 1940, it became apparent that upon graduation I would be in some part of the military. The girl with whom I had spent my high school days and I, had decided early in our association that some day we would be married, and during my Junior year I asked her Father if I might marry his daughter. We were married in May of 1941, and I graduated in June of 1942, applied for a commission in the Navy and spent the next thirty five years as a Naval Officer. At sea my duty was in submarines, and on shore my assignments were in politico-military affairs or professional education. In addition to the war years when I was always gone, and after war assignments in several US locations, we lived in Italy, where I established Polaris missile submarines in the Mediterranean; in Bahrain, in the Arabian Gulf, where I was Commander US Naval Forces in the Middle East, and in Washington DC, where my last military assignment, interrupted because of bladder cancer, was as President of our National Defense University. I cite this Naval history to indicate my assignments were always in command positions after I achieved the necessary seniority. The responsibilities of command do not allow one the luxury of revealing any inability to handle personal problems, so when the symptoms of bladder problems first occurred (in the Middle East) I did not believe them to be serious. I waited for the symptoms to subside. After a year of bloody urine, urgent need to urinate but inability to do so, and constant treatment with pyridium and ampicillin by local doctors who had little experience in such matters, I went first to London, then to Frankfort,Germany, where, in large military hospitals, I was given examinations of the bladder, and urethra and pronounced well, with the suggestion that I may be developing prostatitis. About a year later, in 1972, I was transferred to DC to command the National War College. For a couple of years the symptoms were periodic but controllable, until, after I had become President of the National Defense University and was increasingly beset with severe bouts of urinary bleeding, difficulty urinating in spite of constant urging to do so, the Head of Urology at Bethesda Naval Hospital diagnosed bladder cancer, and recommended a radical prostatectomy. This was done after bladder treatment through the penis with thiotepia failed to reduce the visible signs of the abnormal appearance of the bladder, which after biopsy indicated TCC. After a meeting with a urologist from Sloan Kettering, another from the University of Michigan (medical consultants to the Naval Medical Center at Bethesda) and my own urologist, I was told my options were three. Continued chemical treatment of the bladder which was given a low probability of success since the bladder had not responded; radiation of the bladder which was given a fifty percent probability of relief for five years with probable recurrence after that; and removal of the bladder and surrounding body parts likely to have been contaminated with the cancer in the bladder; i.e.. the prostate, the associated lymph nodes and the urethra. This operation would result in an external urine collection system through a stoma in my abdomen made from a section of my ileum. It would result in sexual impotency and was irreversible. The strong recommendations of all three urologists was surgery.
There was another patient at Bethesda the same time as I. We saw a lot of each other and compared notes. He was attended by these same three physicians, was a male, about my age (57), had my identical symptoms and was given my identical diagnosis. I chose the surgery, he the radiation, because as he said in his business "He was as good as dead with a bag hanging on him". The results: five years later, he died of transitional cell cancer (TCC); I lived a normal life for twenty three years (until 1998) when TCC returned and required removal of the right kidney. Saying I lived a "normal" life is not quite accurate, for the bladder removal required that I be medically discharged from the Navy. I was a Vice Admiral at the time and had no reason to believe my Naval career was at an end. We moved from DC to the Northern Neck of Virginia (both my wife and I are Virginians) and I attempted to become involved in local activities. It did not work, and I became associated with Georgetown University’s School of Foreign Service, where for the next seventeen years I served as Senior Counselor to the Dean of the School, keeping a small apartment in Georgetown as well as our home in the Northern Neck.
Between 1976, the date of my original operation and 1998, when the right kidney was removed, several minor medical problems occurred. One was a sepsis, believed caused by the post operative preventative radiation to the bladder site. A couple of years after the initial operation I developed a series of "chills and fevers" which were debilitating. If I was driving when one of these attacks occurred I began to shake so violently I had to pull to the side of the road. Eventually a large cyst developed in the abdominal area, becoming about bowling ball size before its discomfort required attention. Needle biopsy showed no malignancy and it was drained of over 2000 cc of fluid, and treated for about six weeks by irrigation through a drain left in my abdomen. A mixture of peroxide and distilled water was introduced through the drain tube, and gradually dispersed to a drainage bag strapped around my ankle. During this six weeks period I made an unremarkable trip to the Middle East, doing the necessary irrigation, and observing the discharge from the sepsis gradually clear. I have had no further trouble of that nature. A suggestion was made during this period that penile implants might permit a sex life. This was done for a while, about a year, but neither my wife nor I could become used to the artificiality of the arrangement and the implants were removed.
Somewhere along the way, several years after the original operation the stoma came loose from the abdomen, bled, and had to be repaired. It was a relatively simple operation done under a local anesthetic. An so life went on, with no great complications. I learned that a non-adhesive pouch was for me a better arrangement than the plastic pouches which were glued to the abdomen and began to leak at the most inconvenient times. One broke loose while I was making a talk to a civic group. Fortunately I was wearing dark clothes, ended the talk and left before social embarrassment occurred. The non-adhesive pouch gives much more flexibility in such things as well as allowing the use of a clean pouch each morning and bathing around the stoma to prevent the irritation sometimes caused by a weekly change of an adhesive type pouch. And so we come to 1998. The symptoms were gradual, mild right flank discomfort which I at first thought was muscular, then occasional small indications of blood in the urine. The blood became fairly constant, yet, IVP’s, and all sorts of scans revealed no cause. My physician at the time was the head of urology at Portsmouth Virginia Naval Hospital, and I cannot find fault with him or the care there. Everything was done, cat scans, MRI, IVP’s, until finally I was told that occasionally undetermined bleeding after bladder removal does occur. The Doctor said at one point, "I have a patient who has been bleeding for five years and we cannot find a cause." So I went home to live with the problem.
Sometime after that, several months, during which my energy level was definitely declining, urinary bleeding was constant, I began to run a low temperature, and one night, after being in bed about an hour, I found it increasingly difficult to breathe. At first I thought this had something to do with the sleep apnea machine I use at night, but I could find nothing wrong with that. I took my temperature and it was 103, and it began to be increasingly difficult to get a breath. My wife called 911, and the night in the emergency room diagnosed septic shock. I was put on intravenous antibiotics, which cleared things up nicely. The next day I was transferred by ambulance to the Portsmouth Naval Medical Center, where, this time, an IVP and an MRI found signs of growths in the right kidney near the ureter. The kidney was removed. I spent three days in the hospital and came home to a reduced energy level, a gradual bulging on my right side, but eventual full recovery with creatinine and bun readings at normal levels. Pathology showed a ten cc tumor in the kidney, identified as TCC and invading the connection with the ureter. It was grade one tumor and pathology of the surrounding tissue was clean. Exactly a year later, (both operations were in June), discomfort on the left side and subsequent scans showed a growth on the top of the left kidney. There was no urinary bleeding associated with this incident. A partial nephrectomy was performed with only half the kidney frozen to minimize bleeding. Pathology showed grade one RCC this time.
Recovery was a bit longer, six days, because the epidural slipped out immediately after the operation and I came to consciousness in intense pain which no one could understand. Finally, a day or so later, the nurse found my bed wet where the epidural was flowing on the bed instead of into me. The return of the morphine was a blessed occurrence. Two cat scans, a bone scan and an MRI since the operation in June of 1999 show no evidence of disease. Creatinine and bun readings are normal.
My present state at eighty years of age is pretty good. I do not have the
energy I had, and the bulges on both sides which my son, a doctor, tells me I will never lose, cause larger trouser sizes, but I can do just about what I want to do. I do not sail or play tennis anymore for my balance has deteriorated to a point I am fearful of falling when I suddenly change direction. I have pretty constant lower back pain which Tylenol helps considerably, and my legs do not do all the things they used to do, but that is age I am sure. I walk a boring treadmill each morning, get up to a calisthenic routine of stretching exercises which has gone on for many years. I have never used tobacco, and my alcohol intake has been minimally social. Occasional wine with dinner is about the extent of it. Both my wife and I have eaten low fat food for years. She is five feet, four, weighs 105 pounds and at 78 plays tennis four days a week. I am 6’3′, weigh 200 and have big bulges on my sides. As I said our life has been magical. I thank God things turned out as they did. Had I tried to prolong my life style by insisting on radiation instead of surgery in 1976, I would not now be here, and the past twenty some years have been glorious.
Sometime ago Robin wrote to the Kidney List that her experience with cancer had improved her life. Many did not understand what she meant, but sometimes it takes a bump in the road to realize how smooth that road really is.