DIAGNOSIS & DECISION
Every year or so, I have a physical examination. In the fall of 2002, lab work on my blood revealed a PSA count of 5.5, up from a count of 4 on my previous physical. My primary care doctor referred me to a urologist who did a prostate biopsy. This resulted in a Gleason score of 5 (I think), which the urologist said indicated a high probability of prostate cancer. While briefly covering other remedies, he recommended surgery to remove my prostate within four to seven weeks. He thought that surgery was best for me because my age and health profile indicated that it would have a high probability of eliminating the cancer, thereby returning me to a normal life expectancy. 

 The recommendation was a complete shock. There is no history of prostate problems in my family. I was heavily involved in my academic research, had papers and projects underway, enjoyed a happy home life, was relatively free of debt, and Sallie Mae was still paying for the education of my kids. 

 Shock aside, I had to deal with this unexpected event.  As an economist, I am routinely involved with complicated statistical issues and I'm accustomed to dealing with experts on technical issues I have little or no knowledge about.  My rule is to carefully consider the comments of these experts, especially when I pay for them. I had no reason to doubt the competence of the urologist nor am I a medical doctor or a prostate cancer expert. After talking the matter over with my wife for a day or so, we decided to rely on expert opinion and scheduled surgery. Because it required three units of my blood, it was scheduled for January 30, 2003, about thirty days in the future.

This thirty day lead-time gave us the opportunity to research prostate cancer and to discover if surgery was in fact my best option. I searched the web, including prostate-online.org, told my friends and co-workers about my condition, and talked with my supervisors and benefits people. I was especially interested in the experiences of others who had had the surgery. We attend an Episcopalian Church and my wife is involved in its activities, both directly and through an extensive email network. She also has another email network of friends and relatives. As we went public with my problem, I was first surprised and then overwhelmed at the encouragement and support I received. People sent cards, prayed for me, burnt candles for my recovery and put me on their prayer lists. I was truly touched by all this encouragement as I realized I was not alone in my battle.

The immense number of web pages and library materials dealing with prostate cancer limits its usefulness and is, frankly, overwhelming. I could not evaluate the technical arguments and lacked the time to read long descriptive essays. I could find no layman's guide to prostate surgery and its consequences. In the end, the book we found most useful was "The Complete Cancer Survival Guide," which briefly reviewed the diagnoses and treatment of prostate cancer (among 25 other cancers) and outlined general steps to follow when deciding about surgery. I was especially interested in the experiences of other surgery patients but could find little beyond general discussions of incontinence and impotence.

We still had many questions: Was my PSA test accurate? Should I have more tests?  Was surgery the best solution? What about radiation, chemotherapy or dietary solutions?  Was this the best doctor to do the surgery?  We needed some peace of mind, so we did three more things: 
1.  I found three people who had had the surgery. The first man was, himself, a doctor. His response to his diagnosis was similar to mine: research and second opinion. I  learned the surgery was very invasive and required extensive recovery time, but that normal life could be regained. The second person, a co-worker and professor of government, more or less repeated what the first told me. Both emphasized using an experienced surgeon. The third person was not very analytical and provided little information about his experiences beyond "terrible."
2.  We got a second opinion from another urologist.  He confirmed the recommendation of surgery in all respects. 
3.  We met with our urologist again and were satisfied that he was sufficiently experienced. 
We decided that surgery was indeed the best option to eliminate my cancer.

 SURGERY & HOSPITAL STAY
 For me, surgery was easy. I went to the hospital, took off my clothes and put on a gown. They rolled me into the operating room and then I woke up in another room. For my wife, the surgery was a tremendous emotional strain as she waited six hours to determine its outcome.

 I had never been a hospital patient in my adult life and had no idea what that meant. I remember the surgical nurse telling me to put my hands on her shoulders as I got a spinal shot and later waking up with a terrible thirst.  I found out that the surgery was a success - no other cancer was found - and I had a big samurai incision in my lower abdomen of about eight inches.  I had two drain tubes stuck in my side and a catheter in my penis to drain my bladder. I was in the hospital for eight days. The first couple of days are a blur. Any movement was difficult and I was thirsty. I ate ice cubes and self-medicated with the pain medication pump to control pain and nausea. With time I became more aware of my circumstances, but I was so weak I could do little to help myself. Every 15 minutes, day or night, a nurse would come in my room, check my vitals, my incision, empty the pee bag if needed, and generally try to make me as comfortable possible. Modesty was irrelevant; during my stay I had more people--women and men, black and white, young and old--touch, clean or inspect my penis than I had had in my entire life. 

 After a day or so I started moving a little and taking short walks.  After two or three days, my rehabilitation began. This meant I had to get out of bed and walk around the ward, using the apparatus holding my IV and pee bags for support. In the beginning, lifting my feet to get out of bed was nearly impossible. Susan would help me get up, find my robe, and then guide me as I stumbled to the elevator door and back.  Soon I was up to 50 feet in ten minutes, then 100 feet in ten minutes and finally, if I rested four hours in between trys, I could do the course twice a day. 
The most important factor that affected my hospital stay was the support of my wife, Susan. I had great trouble sleeping and I would lay awake waiting for the day to start with her arrival. Her smiling face was the boost I needed to get through another day. She worried about my comfort, got new ice cubes, and shielded me from visitors I could not converse with. 

 HOME RECOVERY
 Eight days after the surgery,  I returned home weak and with a catheter to connect my bladder with the outside world. The catheter drained into either a bag attached to my lower leg or an overnight bag next to my bed. While it was a nuisance and sometimes painful when I walked, my greater recovery problem was lack of stamina. For the first couple of weeks I just laid around, dozing and reading magazines like the New Yorker and the Smithsonian. I ate little. I had brought home some office work but had neither the interest nor concentration for it. 

 At first a typical day for me was:  wake up, dump a quart of pee, toast or cereal; read the paper; rest from the hard work of reading the paper; dump another quart or so; rest, take a short walk, lunch and dump, rest, walk, rest, dump again, rest, walk, dinner, rest---and finally, after a tiring day, to bed. 

My rehabilitation largely involved rest and walking. The first walks were short and difficult. With my wife's encouragement and assistance, I tried to walk to the big tree and back. Next I aimed for the second big tree, then the bus stop sign before my house, then the sign after the house, and so on. After these walks - never more than four or five minutes - I was nauseous and tired. After a couple of weeks, we went on an outing to the super market. I walked from the parking lot to the store, rested, walked halfway through the store, rested, finished the tour, rested, went home and took a nap. Week by week, my endurance slowly returned and I was able to walk farther and longer.  As the Great Wall of China was built a brick at a time, so rehabilitation progresses a step at a time.

On Wednesday in the fourth week the catheter came out. Within a day I was having trouble urinating and by Friday morning I could not pee at all. I contacted the urologist and was told to come to his office immediately. He did a soft tissue scan and determined that scar tissue from the surgery  was closing off part of my urinary tract. He then inserted a small TV camera through my penis to more closely examine the problem, inserted another device in my penis to expand the constriction (sort of like boring out an engine cylinder of a car), drained my bladder, and reinserted the catheter under local anesthesia--a very unpleasant experience. Day surgery a week later fixed the scar tissue blockage problem and re-established normal functioning.  Just a normal recovery week:  switched from slippers to shoes on Tuesday; a camera up my penis on Friday.

 LIFE CHANGES
 My long-term goal has been to return to life as I knew it before surgery, but with qualifications. While I needed to recover strength and stamina, I also decided to get serious about health and diet. I walk every day, aiming to walk about an hour. I started with short walks and now try to do three twenty minute walks daily, usually with Susan. Although the pace has recently increased somewhat, I walk against time rather than for distance. I carry a stopwatch and explore the neighborhood. I also look for bad parking spots, away from where I want to go. This adds to my walking time and allows me to avoid spas and gyms.  I weighed in at 246 before surgery; I now weigh 225. I used to be Dave, the guy who would eat or drink anything. No longer. Ribs and beer are now largely memories. Because of inactivity after the operation, I lost flexibility and arm strength. I cannot touch my toes or twist caps off bottles. To solve these problems, I recently started doing yard work and signed up for a yoga class. 

A common consequence of surgery is incontinence. I did not suffer complete lack of control, "flooding," after the catheter was removed. Instead, the surgery seems to have reduced my bladder size to that of a grape or raisin, so that I have to urinate much more often. Also my internal controls seem to be messed up so that I am less certain about when I have to pee and when I have stopped. I have about 99% control, but suffer occasional, annoying drips or random squirts when I cough or quickly move. As a consequence, I have to wear some sort of protection against damp underwear and pants. Finding the best protection has been a real chore. I tried various pads, both for men and women, guards and protective underwear without finding a completely satisfactory solution. My current strategy is to simply change more often. My urologist tells me that the incontinence should disappear as my body adjusts to its new configuration. I sure hope so. Another common consequence of prostate surgery is impotency. While my sex drive since surgery has been zero, I await the future developments optimistically.

AFTER-THOUGHTS
 In the turmoil surrounding prostate cancer and its remedy, it is easy to overlook the need for assistance and for nearly continuous long term support. Having a second person help me during my time with prostate cancer and subsequent rehabilitation was by far the most important factor in the whole episode. My caregiver was my wife, Susan, who not only provided counsel, care, and comfort but also served as driver, protector, nurse, and maid. Without her, I would have been lost. 

Before surgery I needed to talk over the problem with someone. After surgery, I was nearly helpless for weeks. In the hospital, conversations with visitors or instructions from medical people were incomprehensible. After the hospital, I was still unable to drive, cook, get prescriptions or take care of myself. I could not bend over to pick up the morning newspaper nor cover myself before I dozed off reading it. Decisions were required that I could not make. I needed assistance--someone who would ensure my general welfare and well-being. I cannot imagine going through prostate surgery with its prolonged recovery without this person. In my case, the task of caregiver, actually the burden, fell to Susan, who performed heroically. Other arrangements obviously can be made but, whatever they are, they should not be ignored or minimized. 

It also should be obvious that prostate cancer is expensive to resolve. Two months after surgery, my medical bills (fortunately mostly covered by insurance) approach $40,000 with more arriving daily. Further, I was on medical leave from work for almost three months (at full salary).

I returned to work on a limited basis, about two months after surgery. While still lacking stamina and finding concentration difficult, I am optimistic about the future and eager to restart work and projects. 

 Going in to the prostate surgery, I thought my struggles would only involve myself and my family. I was wrong. I also had tremendous, unexpected support from friends and associates through their cards, letters, good wishes and prayers. With this support, and with my wife's assistance and encouragement, I endured the surgery and nine weeks of rehabilitation. 

POSTSCRIPT
On April 25, almost three months after my initial surgery, I went to the urologist for a checkup on my recovery. Overall, my progress has been excellent. My PSA score is zero, as expected.   My occasional and erratic drips and squirts of urine are normal and should slowly disappear. I have no fluid retention, while my bladder size and urination are approaching normal. The urologist pronounced my progress at various times as "superb," "wonderful" and "great." While he did caution me to take it easy, no medication or special monitoring was prescribed. Probably the best indication of my progress is that the next follow-up examination is not scheduled for three months.

 I am quickly returning to life as I knew it before the surgery. I am back into my "big boy shorts" (normal underwear) with a pad or some tissue. While efforts to continue to lose weight have failed so far, I have not gained any. Recently I ordered some sort of fish with 5 level (maximum) hot curry at a Thai restaurant and ate it with no subsequent difficulties. Last week I mowed the lawn. Susan I have continued to walk about an hour a day. In two weeks we start a yoga class. I have returned to work with some administrative rather than classroom assignments for Spring quarter. At first I had some trouble reading documents and following discussions in meetings. I could not concentrate and people seemed to be talking too fast. These problems are now largely gone. 

 Because of my surgery I had to cancel a paper scheduled for a February economics conference in New York City and push back some other projects into summer and fall.  Finally, I have begun to restart the postponed research projects and to begin some new ones. While I still have some stamina problems and seem to sleep more, I think I am about 95 percent recovered. I look forward to regaining the last 5 percent. Looking back over the past forty years, I can see missed opportunities and dumb decisions, but if I had to relive those years, my guess is that things would have turned out pretty much as they actually have. My long-term prospects are excellent and I look forward to a normal life expectancy. I could not ask for more.

I want to thank David for taking the time and energy to record his thoughts and recovery for us.  While some of the details might be uncomfortable and even frightening, and not necessarily typical of major university-based cancer centers, I think it helps to know what you might experience if you are considering surgery.  We, of course, wish a continued and permanent recovery for David and best wishes to his family. 

                                                                             - Diane Johnson