Dealing with Prostate Cancer

Sometimes life isn't always fair. I was only in my early fifties - much too young to have prostate cancer, but it happened. It is my story...

Sometimes the best map will not guide you
You can't see what's round the bend
Sometimes the road leads through dark places
Sometimes the darkness is your friend
Today these eyes scan bleached-out land
For the coming of the outbound stage
Pacing the cage
Jimmy Buffett

July, 1999
On July 22, it was confirmed that I have prostate cancer. My PSA level was 5.2 and of 6 biopsies, there was cancer in 4 of them. The cancer was on both sides of my prostate.  Dr. Bosco, the urologist felt that the cancer was "more aggressive" than expected.  Needless to say, it was quite a blow even though it was not unexpected. That type of cancer in particular is something that affects older men - commonly men in their seventies and eighties. Most of the data that I've seen starts at age 55 - and that is young for this type of disease. I wish that I could say that I had the courage to face the uncertainty and life changes that lie ahead. My father died of cancer. Part of my fear stems from seeing him in his last few days. Dorothy also had cancer and is fine overall, but it did change her life significantly. Perhaps that will come. I am not sure. It is hard to describe my feelings at the moment except to say that my body feels unclean. They will not know if the cancer has spread until they operate and examine the lymph nodes near the prostate.  The doctor is quite optimistic about the outcome of the surgery. I am less optimistic than he. I scheduled my surgery for October 19 with the hope of truly enjoying this summer. Most importantly, I want to sail. Other than the cancer, I am quite fit and in very good health.

The Road goes ever on and on
Out from the door where it began.
Now far ahead the Road has gone,
Let others follow it who can!
Let them a journey new begin,
But I at last with weary feet
Will turn towards the lighted inn,
My evening-rest and sleep to meet.
J.R.R. Tolkien

August, 1999
I talked to a friend recently who had his prostate removed and he was very reassuring about the procedure and recovery. He is ten years older than I am though.

This past week, I went to a prostate cancer support group at St. Francis Hospital in Hartford. This seems to be the only one in the area. I was the youngest man there. Most of the other men were between 65 to 75. It was discouraging in that sense. After the meeting, in which people introduced themselves and talked about their cancer (Notice how people tend to own cancer? I think that cancer owns the person.), two men came over and spoke to me. Both had used the same doctor and were pleased with him and commented about the ease of recovery. I was certainly pleased to hear that. One man was a teacher and he even returned to work wearing the catheter. I could not do that.

Lorien made an appointment for me with a urologist at Yale. He said that even though I have cancer on both sides of the prostate, it may be possible to use "nerve-sparing" surgery.

When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom, let it be.
And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom, let it be.
Let it be, let it be.
Whisper words of wisdom, let it be.
The Beatles

It is hard to separate some of the real effects of the disease from my feelings and emotions related to having cancer. I feel that the cancer has spread. (My doctor doesn't think that it has.) I feel dirty and can feel my prostate inside me. I also feel tired and am far less motivated to do things than before. I keep running and exercising. Sailing brings some peace to me. I expect that I will try to find some additional support online.

True friendship is like sound health;
the value of it is seldom known until it be lost.
Charles Caleb Colton

I am reading Callings by Gregg Lavoy. It is a book about figuring out what you really want to do. I have been doing some fiction writing and am pleased with the way that the first draft is coming along. I have wanted to write fiction for a long time.

Courage, it would seem, is nothing less than the power to overcome danger,
misfortune, fear, injustice, while continuing to affirm inwardly that life
with all its sorrows is good; that everything is meaningful even if in a
sense beyond our understanding; and that there is always tomorrow.
Dorothy Thompson

Of late, I have been visiting the Cancer Chatroom in Yahoo. I don't know if it is good or bad, but it certainly is sobering. Some of the people have such strength. Others have suffered so much. My concerns seem trivial compared to some of theirs, but I do know that they are not. One woman told me of her husband who died of prostate cancer. I did speak to another man about my age who had surgery and is coming along quite well. I am most grateful to the support and encouragement of my friends. That makes a real difference to me.

I called Dr. Colberg's office at Yale. They said to bring all the x-rays, pathology slides, paperwork, etc. when I go to see him on September 1. I called the various places and made arrangements to get everything.

How much is real and how much is my imagination, I don't know, but I can feel my prostate getting larger and  it seems like I can feel the cancer inside my gut near the front of the pelvis. It is hard to separate reality from over-sensitivity to the situation. The mind can play strange tricks.

Though here at journey’s end I lie
in darkness buried deep,
beyond all towers strong and high,
beyond all mountains steep,
above all shadows rides the Sun
and Stars for ever dwell:
I will not say the day is done,
nor bid the stars farewell.
J.R.R. Tolkien

September, 1999

September brings foreboding and great angst, fear, and dread. I am very conscious of what little time I have before the operation. Life seems so pressured.

I just got back for the appointment at Yale with Dr. Colberg. He was encouraging in several ways. He did not feel that my cancer was particularly aggressive although he did not want to postpone the operation. He termed it "average". (Is anyone's own cancer average? The question is, of course, rhetorical.) He felt that it might be possible to perform nerve-sparing surgery depending on what was discovered during the operation. He did not rule it out even though cancer is on both sides of the prostate. If the nerves are removed, then Viagra will not work. This was news to me. He felt that shots would probably work. Basically, it is important to save the nerve bundles if at all possible. He was also encouraging about incontinence stopping after a reasonable period of time.  About 95% of men who have the operation regain complete control within a year. He did stress that it is important to give the body ample time to heal. He used the six week figure for time spent out of work as being reasonable and said that time spent during the initial healing process was time well spent. I am convinced that I made the right choice to have surgery done, but will have to make an appointment with Dr. Bosco to talk again about getting nerve-sparing surgery rather than removing the nerves.

I borrowed a couple of video tapes from St. Francis Hospital. The tape on treatment was quite good, but some of the statistics were scary. For example, they said that about one person in 200 died during the surgery. That was a risk that neither doctor mentioned. I do realize that I am younger, in good health, and in very good shape, but such statistics are quite unnerving (sorry about the pun!).

Charles, a "prostate cancer survivor" who does volunteer work for the American Cancer Society, called. We talked for an hour or so. He was 53 when he had his operation which was not nerve-sparing. It was so nice of him to call. He was quite open about the surgery and the recovery. There seems to be quite a range in recovery times. I am in good physical shape and hope that I can recover faster than the average person.

Today is September 23. It is the first day of Fall. It is fitting that I made the first of three blood donations for my surgery today. It marks the end of my summer and the countdown for the operation has started in earnest. Giving blood was fairly easy, but I left... again another bad pun... feeling drained. I am emotionally exhausted and it seems to take a great deal of effort to do things - even sailing. At least I am more than keeping my head above water at work though.

September draws to a close. I called Dr. Bosco today. I spoke to him about nerve sparing surgery. He said that he intended to try to do that if at all possible. My understanding was that because there was cancer on both sides of the prostate that he wouldn't be able to do so. There was a miscommunication or misunderstanding. I am not sure which. I requested that he save the nerves if he could, but I did trust his judgment. I also asked him about Viagra. He said that it works in about 60% of the cases with or without nerve sparing surgery. This is all good news. I am happy that I had a chance to talk with him today. He also said that I should start doing the Kegal's exercises to help recovery too.

October, 1999

I went sailing today and reflected on making the right choice to delay the surgery and enjoy my summer. The countdown is on and there are only a couple of possible sailing weekends left. Even if I could not go sailing again, it has been glorious and worth the slightly increased risk.

An internet friend wrote about her husband who is in his early forties who did not have nerve-sparing surgery. She said that Viagra did not work for him. I feel badly that he is so young and has lost that bodily function. She suggested that I look at Prostate Cancer from a Patient's Perspective. There is a Prostate Help Mailing List on that page which her husband found helpful. I am very cautiously optimistic now. I am in good shape and Dr. Bosco said that he would try to save the nerves. I still can feel my prostate, but at least know that that feeling is not unusual and does not indicate that the cancer is spreading.

An aside... I was in the Post Office several days ago and found out that they have stamps for both breast cancer and prostate cancer.

Today I go in for a pre-operation physical with my regular physician. I donate my last unit of blood on Thursday and see Dr. Bosco on Thursday too. It will be a busy week. The time is drawing near...

The physical went well. I got a prescription for Viagra for use before the operation. I also emailed Dr. Nath, a neurosurgeon at Baylor. He returned my email by calling in the evening. We spoke at length about his specialty and the procedure for doing a nerve graft. He would remove a nerve from the leg which extends to the foot near the ankle and graft the nerve to the prostate nerves. He uses essentially the same procedure to repair nerve damage on other parts of the body such as the face or arm. The only side-effect is lack of feeling on the side of one's foot. Dr. Nath has now performed over a hundred of these nerve grafts with a very high success rate. The procedure has been described in a journal article which is awaiting acceptance and publication. It all makes good sense to me. Dr. Kim, a co-author and former colleague of Dr. Nath, kindly forwarded an abstract of the article to me. If you are interested, you could review it in the January, 1999 issue of the Journal of Urology. (The bibliographic reference is: Kim ED, Hampel O, Mills N, Scardino PT, Nath R: Cavernous nerve grafting restores partial erections after non-nerve sparing radical retropubic prostatectomy. Journal of Urology 161:188-192 , 1999.)

I talked about it some with Dorothy. Her main concern is getting rid of the cancer. She feels that it has been long enough. I thought about it last night and this morning. I think that I will continue with my original plan and have Dr. Bosco perform the surgery on October 19. I don't have the energy to make that kind of a change right now and I don't like the idea of numbness on part of my foot.

In the Sunday paper, I saw an article about a Dana-Farber Institute study using a new experimental drug called endostatin. The article said the drug eliminated prostate cancer tumors in mice and that they were looking for volunteers. I called yesterday, Columbus Day. Since it was a holiday, no one was in. I will call again today.  I am less than hopeful because the web site said that the first group has already been selected and my operation is coming up in just a few days. I wish I had known earlier. I wish that I had not heard about it. When I first read the article, my hopes were raised. The reality is that the operation is coming up soon. Several years from now, there will be far greater hope than what I have. I can only imagine what people who have truly serious illnesses go through. Where is Oral Roberts when you need him?

Today is Friday, October 15. It is my next-to-last day at work. I would not have been able to get just about everything done and solved all of the many problems which have arisen of late without the help of a wonderful assistant, Jessie. I am not working as effectively as I would like, however, so her help has been especially appreciated. I am feeling both angry and afraid now. I can hardly stand the thought of having a catheter in me for several weeks. I feel like I should be feeling sorry for myself, but I do. I will call Dr. Bosco again today. I want to make sure that he will be the actual surgeon and will do his best to try to perform nerve-sparing surgery. I also want to find out how much of my body will be shaved. I want to do that myself. I cannot stand the thought of someone else shaving my stomach and groin areas. I wish that I had some profound words of wisdom, but none come to mind. A lot of what I am thinking and feeling would not be suitable for print.

Tonight, I had my last good big meal for a while. Tomorrow, I will only eat my usual breakfast - cereal, something light for lunch - maybe Slim Fast, and a small supper. Tonight I made a good meal and enjoyed it.

The Menu

Fall Butternut Squash Soup with Basil
Filet Mignon with Bernaise Sauce
Supremely Smooth Mashed Potatoes

1994 Ariel Ambassador Cabernet Sauvignon
(a lovely non-alcoholic wine)

Today is the day. The surgery is at 7:15 - only a couple of hours away. I am as prepared as I can be, I guess. I especially appreciate the support of the people that called or written me. I did eat a breakfast yesterday - scrambled eggs with salsa and some of my homemade bread. I found out later that I should not have done that, but the breakfast did get me through the day. I have been good since then.

My halcyon days are over. It is time to get ready now...

My Road to Zipperbelly (Staples not Stitches)

Today is Friday, October 22. The surgery is finished and I am back home. The two big pieces of news are that Dr. Bosco performed nerve-sparing surgery and the cancer had not spread. I can't ask for more than that. I was in surgery for about 4 hours or so and then spent a couple of hours in the recovery room. I was in my hospital room by 3:30 or so. I got all the good news a little later and was able to call Dorothy to tell her too. I was not permitted to drink anything at first, but a nurse brought me some ice water and a face cloth from which I could suck some water. The alternative was to use awful tasting mint sponges on the sticks which I later found out could be used to brush your teeth. I didn't move around a lot. I got pain medication and sleeping medication. I slept a lot, but irregularly. The man next to me was quite deaf and slept days and was awake nights. (He left the following day and a normal person took his bed.) Wednesday, I did sit up, read some, talked on the phone, and was given some juice to sip. I didn't feel like drinking much, but the tart cranberry juice tasted so good. Lorien got me some chicken broth from the cafeteria. I had 3 or 4 small sips. That tasted so good. Again, I slept irregularly and watched First Wives Club on TV. I woke up in the middle of the night drenched with sweat. The nurse and her assistant changed the bed and my nightie. That was about the only TV show that was on that was worth watching. I felt so dirty because of the sweating that I washed myself in a shower. I was very careful not to get anything wet. Thursday, I was put on a liquid diet officially. I was more awake and read rather than just stare at words. I started walking on Thursday morning by doing six laps of the corridor to the elevator. (Marathon training has to start someplace!) I did eight in the afternoon and ten evening. Thursday night, I got permission to eat solid food. I wasn't very hungry, but ate some noodles, chopped spinach, and some pears. That tasted good. The bad "gas attacks" that I've read about never came, I did pass gas, but never in great quantities. Today, Friday, I was released. The two residents removed the drain in my abdomen, I cleaned up, and Dorothy picked me up. I was so happy that the ride home was so short and smooth. Coughing REALLY does hurt.

I just walked up and down the block - about a quarter of a mile. I am tired now and will rest in just a minute.

Special thanks go out to Drs. Bosco, Colliton, and Colberg for discovering and treating the cancer. Also, I am most appreciative of the nursing staff and assistants at St. Francis Hospital. They not only made my stay at the hospital as pleasant as could be expected, but the performed all their duties and answered all my questions in a reasonably prompt, courteous, and thoroughly professional manner. Thank you one and all.

Lorien went to a pharmacy Saturday afternoon. The pharmacist suggested Pepto-Bismol and Coca Cola to help with the nausea. It helped a lot. I walked up and down the block again today and ate more in very small portions. I feel much better in the early evening than I did in the morning. My stomach is quite swollen (bloated). I purchased pajamas that looked quite large, but they press against my stomach too tightly. The same is true with the large sweatpants that I wear for walking. The bag does show, but I am not seeing anyone and am not in a Gentleman's Quarterly competition.

It is now a week after the surgery. I am finally starting to sleep through the night and feel like I am getting back to normal. Tomorrow the staples will be removed.

No More Mr. Zipperbelly

The staples were removed today - a week and a half after the surgery. What a relief. The area in which the staples were removed still hurts, but I can tell that will disappear in a day or so. At least the staples are not being pushed into my stomach. One week to go until the catheter is removed.

November, 1999

Tubeless in West Hartford

Today is November 4. It has been about 2 1/2 weeks since the operation. I went to see Dr. Bosco today. He removed the catheter. It was far from a pleasant experience. I laid down on an examination table which was a good idea, because some physicians remove it with you standing up. There is a "balloon" filled with water inside the bladder which keeps the catheter in place. (I don't think one has to worry about pulling the catheter out accidentally, but I didn't know that.) He deflated that first using a syringe at the end of the catheter. That caused a muscle spasm which he said was not common. After that, I was very much on edge and found it hard to relax which made his job more difficult. He then removed the catheter which caused a great amount of pain, although the pain was short-lived. It took only seconds to remove it. I did feel faint, sat up, but did not move much for a couple of minutes. I brought a full Depends diaper with me and asked him what I should get. He said that there was a type which I could wear under regular underwear which would be just fine. The full diaper style, he thought, was overkill. He said that the worst times would be in the late afternoon and early evening when I was tired, nighttime would not be a problem, and to expect slow, but steady progress in terms of regaining control. This is another major step completed.

I am going to start light exercising today. Dr. Bosco said to start doing the Kegal's exercises again. I have been pretty faithful walking, but really want to start doing some other exercises. My stomach is still somewhat bloated and I want to get that down. It has also been weeks since I did any heavy-duty exercising or running and I miss it. I want to start getting back into shape.

I am surprised that my bladder control is as good as it is. I have only had a few very minor problems.

December, 1999

Life Returns to Normal

I started work half-time at the beginning of December. It felt good to get back to work especially for a nice new boss. I started half-time which was good. For the first week, I would return home tired. The second week went more easily. I started full time on December 2 - about 6 weeks after the operation. I also started running about that time too. I could not run fast, nor far, and my form was laughable at best, but it didn't take long before I was running over a mile. I am getting faster now, running a little farther, and my form is not quite as bad. Unfortunately, I cannot run far at all without feeling like I have to go to the bathroom even though I go before I start. I've been continuing my regular exercising and also working out with Gilad: Bodies in Motion in the mornings on television. I am convinced that it has helped a lot. There is no significant improvement in my sexual functioning as yet. WebMD has an article of interest that looks encouraging. Viagra Useful for Impotence Following Prostate Surgery is online at http://my.webmd.com/content/article/1728.52653 and states that Viagra can help many men improve sexual functioning with Viagra with the best results with people who have had both nerves spared, followed by those who  have had one nerve spared, and then those who were unable to have nerve-sparing surgery.   I see Dr. Bosco on December 16 and expect nothing but good news. My waist is still larger than what it was and some pants put a degree of uncomfortable pressure on my scar.

The appointment with Dr. Bosco went well. I told him that I had been bleeding rectally, but he assured me that it had nothing to do with the prostate surgery. He did refer me to another specialist. He prescribed Viagra. I had a blood test done after that appointment. He called several days later and said that I was cancer-free. 

January, 2000

I start the New Year cancer-free. I keep working out and having oatmeal for breakfast and Slim Fast for lunch. My waist is going back to normal and my pants are beginning to fit again. The one bit of bad news is that the Viagra has not worked. 

February, 2000

I am getting back in shape, losing inches and pounds. My pants are actually getting loose. I have tried Viagra several times without success. I still have to go to the bathroom more frequently than normally. I will ask Dr. Bosco about that next month when I see him. I had the colonoscopy and everything was clear. The bleeding has stopped.

March, 2000

I had my appointment with Dr. Bosco. Everything checks out fine. He said to keep taking Viagra. The company (Pfizer) says that it will work over time. I am not sure if this is a marketing ploy or if it is fact. He said there have been no studies done on this. I have lost weight and continue to exercise. I am getting into good shape.

April, 2000

For the first time since the operation, I am really starting to feel well and healthy. Some of it is healing, some of it is the exercise, some of it is the energy that spring brings after a gloomy winter. Whatever the reason, I am feeling good.

I recently received an email from a woman whose husband, Herb, had his prostate removed on June 21, 1999. Here are the comments and advice from Judi...

... Like your doc said keep taking it. Make sure you take it on an empty tummy or 2 hrs after you ate. Herb's still taking it and has had it work a few times. Ed I think it's mind over matter, last month on our 18th wedding anniversary I fixed us a killer dinner (steak, backed potato, tossed salad, home made garlic bread ; and chilled BLUES POINT Australian sparkling wine) in our room. I had candles ( over 50 ) light up the room with soft romantic music. Little did he know that I was going to seduce him. To make a beautiful story short, he had an erection big enough to please me as well as himself. ED, that was WITHOUT Viagra. Herb was beside himself. I've never seen him smile the smile he smiled that evening / morning. That following morning he looked at me and asked me what came over me. I just told him to be careful what you pray for :-) ... I'll placed that smile on my husband again when he least expects it. Herb's still taking the Viagra. It's working, but not as good as we expected. The more he takes it the better chance it'll work.

Notes like that are encouraging to say the least.

I still feel angry that I have not been able to function sexually. I resent getting the cancer and how it has changed my life. Part of it is that I feel that there is no part of my body which is private anymore. The feeling could best be described as humiliation - that isn't exactly correct, but it is as close as I can describe it right now. This too shall pass...

 June, 2000

Another appointment with Dr. Bosco... I dread them - especially the digital exam. He was a bit rushed and didn't have time to talk. I'm just as glad. There are times, most of the time actually, that I don't want to talk about it. The exam went well and I'll get the results of the blood test soon. I'm not worried about that. He did say that there were some exciting developments in the drug pipeline that serve the same function as Viagra. One is an pill; the other is a cream. He also said that recent studies indicate that it may take up to two years to regain functioning. (I did tell him that I was not interested in using a pump or injections.) I got a prescription for medication to control my frequent urination (Detrol). I know that if I didn't drink coffee in the morning that it wouldn't be quite as bad, but a man has to have some pleasures in life. 

Overall, I really am doing well. I started feeling truly well and strong in early May. What a difference! I am still surprised that it took so long for me to feel that way considering that I was in excellent shape going into the operation.

August, 2000

There has been a very small improvement in my ability to have an erection. It is very minimal though. An orgasm, though pleasurable is also painful at times.

On the news, a man spoke about the link between dairy product consumption and prostate cancer. This was the first thing that made sense. I have always consumed large amounts of dairy products - far above what most adults would consume. I would drink up to a quart of milk a day commonly. Apparently, the protein in the milk may cause the cancer and the hormones in the milk make it develop more rapidly. It is the only thing that I can think of which may have aggravated or precipitated the cancer. I am including the link because it is worth investigating.

October, 2000

Memories of the operation were quite vivid - most of all the removal of the catheter. It has been a year now. I am in good health. The improvement in functioning has been quite slow, but at least there is some. 

May 2002

It is about 2 1/2 years since the operation. There is hardly a day that goes by that  I am not affected by the results of the operation. It has changed my feelings of "self", contributed to depression, and certainly affected my marriage. Other than a couple of attempts at intercourse late last June, there has been no sex and little sexual activity. I still have almost all the Viagra that I got shortly after the operation. There is still either a sensation of pain or a need to urinate after climaxing. I am able to get more of an erection now. Dr. Bosco was right when he said that it can take up to about two years to fully recover. My desire recovered faster than my body. I do know that I should be happy that I am alive and basically well, but I don't in many ways. I went to Dr. Bosco for a checkup recently. It was a year overdue. I was worried that I had cancer again and couldn't bare to confront that possibility. I don't and I passed the PSA test with flying colors.

I found an interesting article by Andy Groves, former Intel CEO. You can read  Taking on Prostate Cancer in the 5/13/96 issue of Fortune.

I feel that I am truly blessed to have received so much support from Dorothy, Lorien, other relatives, friends in real life and on the Internet, colleagues, and others. That support has helped me get through some rather difficult times. Visiting the Cancer Chat Room in Yahoo helped make me realize that I was not only not alone, but there are so many people who have health problems far worse than mine. Thank you one and all...

Paul's Steps for Recovery

  1.  Getting out of bed and walking a lap around the nurses' station.
  2.  Moving bowels.
  3.  Surviving the ride home.
  4.   Increasing your walking distance by 50% every day after you get home.
  5.  Being able to cough and sneeze without moaning "Geeze" afterward.
  6.  Taking naps when your body tells you to until it stops telling you to.
  7.  Getting the catheter out.
  8.  Being able to wear pants with a belt that isn't going to drive your tender
       scar bonkers.
  9.  Starting a light return to work.
10.  Regaining continence gradually.
11.  Dealing with sexuality.

Ed's Suggestions

1. Get pajamas at least two sizes larger than what you would normally wear preferably with a non-elastic top.
     Your waist will swell much more than you expect.
2. Be prepared for nausea. Pepto-Bismol and Coca-Cola worked for me.
3. See at least two different doctors. It is hard to digest everything that one doctor says to you.
4. Don't believe everything you hear or read. Each person is unique.
5. Find someone who will listen to your concerns and wipe your tears. It is harder emotionally than one would expect.
6. Lie down when you have the catheter removed.
7. Expect your penis to feel different. Several inches of your urethra has been removed which pulls it inside you.
8. Exercise.
9. Go to the bathroom when you first feel the urge. That will help minimize control problems.

Whatever course you decide upon, there is always someone to tell you that you are wrong.
There are always difficulties arising which tempt you to believe that your critics are right.
To map out a course of action and follow it to an end requires courage.
Ralph Waldo Emerson 

Prostate Cancer Support Group

But as in landlessness alone resides highest truth, shoreless,
indefinite as God - so better is it to perish in that howling infinite,
than be ingloriously dashed upon the lee, even if that were safety!
Herman Melville

Send a message
in a bottle
e.zeiser@worldnet.att.net

One should not bring sympathy to a sick man. 
It is always kindly meant, and of course it has to be taken -
but it isn't much of an improvement on castor oil. 
One who has a sick man's true interest at heart will forbear spoken sympathy, 
and bring him surreptitious soup and fried oysters
and other trifles that the doctor has tabooed.
Mark Twain