Documenting my journey into the murky and confusing world of prostate cancer | Home | Journal | About | My Family | Links | Archives | E-mail |

Started: May 21, 2000
Last Update: April 29, 2003

Summary:

Skip all the narative just give me the big picture.

Foreword:

On February 7, 2000 at the age of 67, I was diagnosed with prostate cancer. That event started an entirely new chapter in my life, but I don't intend to let it become my final chapter.

This journal is about my bout with prostate cancer.

I know this is serious business, but I will attempt to present my adventures (and misadventures) in a light-hearted manner.

They say, "Laughter is the best medicine" so I will try to practice good medicine.

Disclaimer:

To my fellow PCa'ers, I am not a doctor and undoubtedly many of my findings and actions will be flawed. Do not follow my path. Follow your own, in consultation with your heart, your head, your family, your doctors, and trusted friends.

Background:

This journal is an offshoot of my daily journal that I have kept on the web since May 1996. I mentioned there that I had been diagnosed with prostate cancer and said I would create another web page about it. This is it.

If you want to know more about me, checkout (appropriately named, I might add) About Old Lloyd. You can even find out why I chose such a strange name (My real name is Bob).

Purpose:

I suppose the main purpose of this web page is to chronicle the events in the diagnosis and treatment of my prostate cancer.

It also helps me organize my thoughts when I commit them to paper (so to speak). In addition it is an effective way to communicate with my adult children who can read about what's happening to their "dear old dad."

Another purpose is to perhaps provide some help to those who are in similar circumstances or the loved ones of same.

Lastly, I hope to provide some humor and lightness to your day. Sad days are long and lonely nights are terrible. Let's cheer up.

Comments:

About 20 years ago I had cancer of the larynx. The cancer was surgically removed along with one of my vocal folds. Now I'm OK. My voice has changed. It is much deeper. Just for fun you can hear my voice on my homepage. Hit the "RELOAD" button to hear it again. This is the sound of an old bird flapping only one wing, so to speak, if you'll pardon my pun and weird metaphor.

In a strange way having had cancer before made hearing my doctor tell me that I have prostate cancer somewhat less frightening. That's a good place to start. I'll give a little history and then start with my experiences with my first urologist.

History:

Back in 1992 my prostate specific antigen (PSA) level was elevated. I had a needle biopsy performed and it was cancer free. I was diagnosed as having Benign Prostatic Hyperplasia (BPH). There you have it...the first prostate cancer acronyms. Before I had prostate cancer (PCa) I thought PSA stood for Public Service Announcement.

The urologist who performed the transrectal ultrasound of the prostate (TRUSP) biopsy stopped in the middle of the procedure to take a telephone call. I could tell it wasn't an emergency call either because he stayed in position and I heard half the conversation. There I lay with who knows what stuck up my behind and he takes a few minutes off to answer the phone!

It's one thing to get interrupted at the checkout line for the clerk to take a call...it is another thing, altogether, for a doctor to interrupt a "delicate" procedure. In my mind, I fired that inconsiderate, unprofessional, doctor.

My internist told me not to worry about my PSA. I didn't. A few years later my internist died. I found out that he was a smoker and died of lung cancer. That made me question his judgment concerning my PSA.

My new internist took my PSA during my annual physicals. It started climbing. When it broke 10, he suggested I consult with a urologist. I followed his advice... (The story continues...)

Monthly Events:

  February 2000

Second Needle Biopsy

The new urologist recommended another biopsy (TRUSP).

I submitted myself to another indignity. I counted the sticks...one, two, three, four, five, six, seven, at that point I asking, "How many core samples are you going to take? He said, "As many as it takes." Then he said "Twelve." The other urologist only took six.

Not to get too indiscrete here, but my scrotum was tied in a knot for over 5 weeks following this invasion. I visualized my prostate to be like a ball of Swiss cheese.

I started to search the Internet to learn about prostate cancer.

The Bad News

A few days later, the urologist told me that I have prostate cancer: 2 of 12 samples were positive. Stage T1c. One was Gleason Grade (3+3) the other Gleason Grade (3+4). This was later re-read by two other pathologists, including JHU, as both Gleason Grades (3+3).

He explained to me that this type of cancer is slow growing and is curable. He tried to be calm and matter-of-fact about the whole thing.

He said that the best treatments, if the cancer hadn't spread, are an operation to remove the prostate or radiation therapy. He explained about external beam radiation therapy (EBRT) and brachytherapy (seeding).

I asked, "Who should do the operation and where should it be done?" He quickly answered, "Montgomery General Hospital and me. If you want it removed, I'll just snip it out. If you want radiation, radioactive seeding can be done by me on an outpatient basis. It takes less than an hour."

I tried to draw him out on the number of procedures he had done and his success rate. He was vague as to the number of operations and seedings he had done. He said he did one or two a week and had been doing them for about 4 years. I quickly figured at 100 per year for 4 years that would be about 400, right? Not so, he backed off those numbers very quickly.

I asked him about the dreaded side effects of the operations and what his record was on those. He fumbled in his top desk drawer and pulled out three loose sheets of paper with handwritten notes. He said, "I keep complete records of my patients and their progress." That cinched it for me. He wasn't the man to do the job.

I asked him whom he would have operate on him if he ever got prostate cancer. He quickly mentioned the name of Dr. Patrick Walsh at Johns Hopkins (JHU). I live only 40 miles from JHU. This was the first time I heard his name. Then he quickly added, "He only operates on 'big shots'." I gathered from that that he thought he was a "big shot" and I was not. He was probably correct.

The doctor ordered a bone scan and CT scan of abdomen and pelvis to see if the cancer had spread.

He gave arguments against radiation at this time:

• Radiation can only be done once and if it fails then hormone therapy or chemotherapy may be tried.

• If surgery fails you could still do radiation therapy.

He gave arguments for surgery (RRP):

• Surgery is "the gold standard for prostate cancer treatment." (I thought we went off the gold standard years ago)

• Many people think that RRP is the only "cure" for prostate cancer.

I had the CT scan and bone scan procedures. Both were normal.

I called 1-410-95-JOHNS to set up appointment with Dr. Walsh. They said the earliest I could see him was in 4 months. I made an appointment with another JHU urologist for Feb.29th.

Consultation with JHU Urologist

The urologist examined me and read my reports. He recommended against surgery because of risks due to my general health, size, and age. He said radiation would be almost as effective and a lot safer, but he would perform a nerve sparing radical retropubic prostatectomy (RRP) if I wanted him to. He recommended a radiation oncologist at JHU.

The soonest I could see the radiation oncologist was April 20 (almost 8 weeks).

  March 2000

Information Search

I intensified my search for information about prostate cancer. I read 6 books about prostate cancer including Dr. Walsh's.

Two of the books were by men who told their personal stories of PCa treatments.

One was Man To Man. He had a RRP by Dr. Walsh at JHU. His was a frightening story. It made me not want surgery.

The other was Seeds of Hope written by a doctor who had brachytherapy performed by Dr. Blasko in Seattle. That made me not want to have seed implants.

Let's face it, I don't WANT any treatment ... AND ... I definitely don't WANT prostate cancer, but I have it and I must face it.

Prostate cancer is a terrible disease. It is somewhat analogous to having your leg caught in a steel bear trap out in the wilderness with little or no hope of anyone coming to rescue you. Do you cut off your own leg and hope that you don't bleed to death? Or do you wait and die from thirst or hunger (hungry bears included)? These are terrible choices we are asked to make. In some ways it might have been better back in the old days when you went to the doctor, put your trust and faith in him, and followed his advice.

I received the "slick brochure" from Radiotherapy Clinics of Georgia (RCOG). Their treatment is very interesting and their results impressive, but they require extensive radiation treatments in Georgia and I want to find a local place near DC for treatment.

I ask every doctor I visit about RCOG.

• One asked, "If they were any good, why do they have to advertise on the Internet?"

• Another complained about "their slick brochure."

• Another said that the doctors there went out of their way to alienate others in the business. He hinted that other doctors disliked them for that tactic, but that their treatments were good.

I joined four Internet e-mail help groups. I typically received about 100 e-mails each day.

I searched the web and found hundreds of good references. It is difficult to find good sites because of the large number of them. I had over 181,000 hits on "prostate cancer" using one of my favorite search tools, Fast Search. There were over 503,000 hits on "breast cancer."

Aubrey Pilgrim has written a thorough, thoughtful on-line book entitled, A Revolutionary Approach to Prostate Cancer Treatment Options - Doctors & Survivors Share Their Knowledge. It is a must read.

Don Cooley has compiled a wonderful, comprehensive web site about prostate cancer: Patients Helping Patients - Prostate Cancer From a Patients Perspective

From all the searching and studying, I was disappointed that there were so many different opinions about the success rate of different treatments. One peril is that it is difficult to recognize "good" sites from "bad."

Another peril is the incorrect use of statistics. I have seen people use them in an obvious attempt to mislead. For example, one site said that only 1 man in 500 would die from prostate cancer. The odds of dying during an operation were 1 in 50. Their conclusion was it was safer to do nothing.

The most frustrating thing about this disease is that you are always racing with death. The question always remains: when will I die of something else? From everything I've read, dying from prostate cancer is a terrible, terrible way to go. Prostate cancer is often slow growing, so what is one to do?

Another big factor is the undesirable effects of each treatment. Assuming the treatment fixes the cancer, it may leave you impotent, incontinent, with rectal bleeding or worse.

Hormone therapy (Lupron) really scares me. If you read the list of 265 possible side effects of Lupron you should be scared too.

One has to ask the question: Is it better to live 5 or 10 good years without treatment and then die a horrible death or have treatment with severe side effects and live 10 or 15 years peeing your pants, having a sleeping beauty, pooping your drawers and then die a horrible death? Of course, you might not have these problems on a permanent basis. You might be lucky and live a long time and then die peacefully in your sleep of something else.

Let's pause here for a little humor....read The Cockroach Analogy. I like it. Read the Jelly Bean Theory of Life. These funny stories are part of You Are Not Alone a great PCa web site.

  April 2000

Consultation with JHU Radiation Oncologist

He looked at my films and examined me.

He had two trainees with him. They sat quietly just observing. However, when the doctor did the digital rectal examination (DRE) (finger up the butt) he withdrew his finger and said "Just a minute." Then without even so much as a "howdy-doo" another finger went up butt and then another! If the doctor would allow this personal invasion of privacy, might he not also let a trainee administer my radiation therapy without my knowledge and approval (which I would never, never give)?

He recommended 4 months of Lupron treatment with 8 weeks of EBRT starting after the 2nd month. He said the 5-year cure rate would be 70% without Lupron and 80% with Lupron using PSA of 0.5 as limit criteria. The 10-year cure rate was projected to be 60% without HT. He didn't have 10-year data with HT.

When I asked about seed implants he said my prostate was too big for SI (70 g). I asked if Lupron could be used to reduce the size and then do seeding. He said it wouldn't be enough and would still be too large.

Short term side effects:

• 50% incontinence

• 5% urethral strictures

• 5% rectal bleeding

  May 2000

The INOVA Alexandria Hospital Cancer Center, A Local Center of Excellence

I learned of a local "prostate cancer center of excellence", the INOVA Alexandria Hospital Cancer Center. I made an appointment and was asked to bring my biopsy slides and films, which were at JHU. You can read my story about trying to find them in the bowels of the Johns Hopkins complex.

Dr. Clarke spoke with me on the phone about my PCa. I set up an appointment. He followed it up by sending me a letter, several PCa books, and a well-done manual called "Prostate Seed Implant - Patient Resource Manual." It needs to be updated. It should also include Dr. Clarke's record of success. I would quote what he told me, but I don't want to get it wrong. It was very impressive. He has performed over 600 seed implants (brachytherapy).

Initial Consultation with Dr. Clarke

Dr. Clarke is the director of brachytherapy at the INOVA Alexandria Hospital Cancer Center. He and the hospital pathologist read the slides as both Gleason 3+3. He did a DRE. We talked about treatment options. He favored seed implantation (SI) with Palladium. He wanted to do an endorectal MRI (erMRI) on me to determine the size of my prostate and to look for cancer outside the prostate (ECP). The erMRI is more accurate than guessing from the CT scan.

We talked about the size of my prostate. The JHU urologist thought it to be 90-95 cc. The JHU radiation oncologist thought it was 70-75cc. Dr. Clarke thought it was 40-50cc

He wants to see the results of the endorectal MRI (erMRI) before he recommended EBRT in addition to the SI. In either case he wants to have me on 6 months of hormone therapy to shrink the size of my prostate.

He discussed the erMRI procedure and showed me the probe that would be inserted into my rectum. It was about 14" long with a head that looked like an old-fashioned lemon juicer. It had a rubber bladder over it is blown up to lock it in place during the test. After he showed it to me, I wished he hadn't.

Endorectal MRI Scan

A nice nurse told me about the procedure in a step by step manner. When she got to the part about the probe she spread her hands apart about 18" and said, "The probe is about this long." She watched my eyes to see how big they got. Then she laughed and said only the first few inches would be inserted. Funny stuff.

They greased me up. Then they greased up the probe. They put me on my left side and told me to breathe deeply. I imagined they thought that by doing so I would suck in the probe. It was cold and hard but not painful. After a few seconds they said, "now we'll put it the rest of the way in" and IN IT WENT! After it was in they inflated the bladder. I can't imagine how big it might have been. My mind thought of a football.

The probe wasn't painful but it sure wasn't comfortable.

I'm a big guy (6'5" 280 lbs) and just fit inside the MRI scanner. The probe just fit inside me. If the probe had been just a little bigger, I would not have fit in the MRI machine!

They gave me some earplugs but the noise was still loud.

About half way through my forehead started to itch. There was no way I could reach it to scratch. I tried to think of something else but I couldn't. In a way it was a blessing because I didn't think about the erMRI.

It was all over in about 30 minutes. It wasn't nearly as bad as I thought it would be.

Consultation with Dr. Clarke to Discuss erMRI and Treatment Options

Let me digress here for a minute...

Each time I have a consultation with a doctor I prepare notes and a list of questions to ask him. I always anticipate what the doctor is going to tell me and try to tailor my questions specifically about the treatment. So far, without exception, I have been wrong about what to expect. My questions are, therefore, practically useless.

Let me give you some examples:

• When I saw the JHU urologist I expected him to recommend an RRP. I was prepared with a lot of questions about the procedure, the recovery, etc. He recommended radiation.

• When I saw the JHU radiation oncologist, I expected him to recommend seeding and EBRT. He wanted to do hormone therapy followed by EBRT. Most of my questions were about seeding.

• When I saw Dr. Clarke, I expected to discuss brachytherapy and EBRT. He wanted to wait to discuss EBRT until the erMRI was done.

Now the erMRI was done. I didn't know what to expect. But I didn't expect what was about to happen....

Doctor Clarke came in shaking his head and said that I had the most unusual prostate he had ever seen. He told me he had never seen one this long. The typical prostate is about 35mm long; mine is about 70mm (almost 3"). He showed me the MRI films that showed cross sections of my prostate gland like slices of salami. There were many benign tumors that looked like gray wads of chewing gum. He told me that the small black areas were probably the cancer tumors.

The really good news was that there were no signs of cancer outside the prostate.

Because my prostate is long but not fat, he said I didn't need to have hormone therapy to shrink it. That was great news to me because I feared the side effects of Lupron which include:

• loss of libido
• hot flashes
• night sweats
• mood swings
• depression
• breast enlargement
• nipple soreness
• osteoporosis
• loss of body hair
• impotence
• loss of muscle mass
• fatigue
• weakness
• obesity
• chemical castration

To me, Lupron is like the third spirit in Charles Dickens' A Christmas Carol. I think I feared it most of all. I don't fear loss of my manhood. I don't fear loss of my life. But I do fear losing my mind and changing into an old woman. Don't get me wrong. I love women. I just don't want to be one.

Dr. Clarke and I again discussed all the treatment options.

We decided that the best course of treatment was to have another PSA test in one month. If it isn't rising, then repeat every 3 months and follow "watchful waiting." If the PSA doesn't rise, have another needle biopsy one year from my last one.

If my PSA continues to rise, then the course of action is to have conformal EBRT followed by brachytherapy.

  June 2000

Plan and Status:

• Schedule another PSA test

  Status:

  PSA test was performed and the results showed a lower PSA! It changed from 11.1 to 10.9. That was not much of a change but it was in the correct direction. I'll have another PSA test in 3 months as planned.

  
  

  DATE	PSA
  1996	9.4
  1997	9.6
  Nov. 1999	11.1
  June 2000	10.9

  
  

  Investigate diet and exercise

  Status:

  
  

  • I read Dr. Arnot's new book The Prostate Cancer Protection Plan : The Foods, Supplements, and Drugs That Could Save Your Life. I paid about $20 for the book from Amazon. Now I see several at auction on eBay for less than $5.

    My casual review:

    ---

    I liked the book. It has 5 pages of acknowledgments that are put in the front of the book. There are 9 pages of footnote references and a useful index.

    He appears to have been heavily influenced by the work of Dr. Dean Ornish and Michael Milken (founder of CaP Cure) which he is up front about.

    Dr. Arnot says he follows the advice he presents in his book and feels great.

    The most significant thing I found in the book is his belief that PCa is "a nutritional disease." In fact, part one of his book has that title. Dr. Arnot seems to believe that the typical American lifestyle causes many men to succumb to PCa. Poor diet, stress, and inadequate exercise are discussed in great detail as the primary causes.

    The PSA test is described and its benefit for early detection is touted.

    Treatment is mentioned but is not the main subject of the book. Over 7 pages of the 338 page book are devoted to PC-SPES ("Prostate Cancer Hope"), 6 for surgery. Very little material is presented about radiation therapy. In the introduction he states: "Radiation therapy and radioactive seed implants are alternative therapies, but these also have side effects such as incontinence, bowel irritability, and sexual dysfunction."

    He says animal fat is bad. Oils are bad but olive oil is the best of them. He has a list of "good foods." They include, foods high in fiber, whole grains, soy, tomato, broccoli, beans, fruit, and green tea. Sugar, carbohydrates, and white flour are bad. Getting more sunlight is also on his "do list." He thinks the vitamin D from sunlight is beneficial as are daily multivitamins.

    His section on stress left me a little cold. I can't see doing meditation for an hour a day sitting motionless in a straight backed chair repeatedly saying "ohmmmmmmmmm...." in a monotone voice. Cultist use this technique to brain wash their initiates. Permanent brain damage often occurs. I'm not kidding! Imagine me doing Yoga. I have a hard time getting me feet off the ground much less putting them behind my ears.

    He says studies show that tall, fat, bald guys are more apt to get advanced PCa. That was not very comforting to me given that I am a tall, fat, bald guy. I can't do much about being tall or bald, but I'm going to try some of his ideas about diet to reduce my body fat.

    The book has a lot more useful information in it. I'll use it for reference in the future.

    ---

    This is what I remember from reading it. I suppose that is what really counts.

    I'll report in this journal my success following his diet ideas.

    
    

  • Good web site: NIH, NCR, Eating Hints for Cancer Patients

    
    

  • I read many articles on the Internet about PCa and diet. There seems to be consensus that animal fat and dairy products are bad. Also, green tea (or white tea) and soy are good, although there is some disagreement about soy.

  
  

  Lighten up and try to relax

  Status:

  I haven't lightened up. In fact I've gained about 3 pounds.

  I've tried to relax but it's difficult when you know you have prostate cancer and are following "watchful waiting." It could be appropriately called "watchful wishing" or "watchful worrying."

  July 2000

Since active treatment for my PCa is not presently scheduled, starting this month I'm changing the format of my journal to be more narrative. This should reflect what's going on in my mind rather than what is happening to my body.

I'm also using the same large capital letters to indicate a change in subject. This should make for faster reading because you can skip over topics about which you may have little interest (like my family).

One of the new pages I'm turning over in my life is to reduce stress and tension.

One thing I've done to reduce stress is to stop watching Cross Fire, Equal Time, and similar "talking head" shows on TV. I still listen to Rush and Michael Reagan on the radio between 1am to 4am when I get up to pee. I usually go back to sleep very quickly. In fact, sometimes I think I go pee and remain asleep. (This throws off my nocturnal interruptus counter.)

As an aside, I help my wife, Pat go to the bathroom in the middle of the night sometimes. She calls me on the intercom. (We sleep in a different bedrooms because my snoring bothers her.) I usually wake up when she is just about finished calling me. Often I wake up without hearing her at all, but realize somehow she called. The other night I was sure she called me and said, "Bob, come here I want to talk to you." I got out of bed and found her fast asleep. I must have been dreaming. Rather than waste the interruption, I made a trip to the bathroom.

Another thing I'm going to try to do to reduce stress is to try to uninvolve (if there is such a word) myself in my kids problems. Most of them ignore my advice anyway and that just frustrates me. I believe it was Will Rogers who said, "If you want your kids to do what you want them to do, find out what they want to do and then ask them to do it." Even if I did that, one of my kids, I know for sure, would change her mind.

I am tempted to quit watching the news because it is usually bad news. I'm also toying with the idea of becoming apolitical because there is little I can do about politics except vote every 2 years.

One thing that I've done that has immediately reduced stress was to decrease the tension on my suspenders. My pants were riding high like those of an old banker. "What a relief", my privates are saying.

To avoid becoming a "couch potato" I'm going to start taking walks. I'll walk around the block so that I won't be far away if Pat calls me on the cell phone.

I've changed my diet to as follows:

• No meat
• Very light on dairy products
• High fiber
• Lots of fruits and vegetables
• Whole grains
• Very little refined sugar
• Eat lots of soy
• Drink at least 2 cups of green tea each day
• Eat lots of beans
• Drink 6 oz of no-salt V8 juices with dinner meal
• Take 1 multivitamin each day
• No coffee

So far it hasn't been too difficult to stay on this diet. I miss meat and sugar. I like the new items. This won't be too difficult.

If I backslide a bit, I'm not going to sweat it. This is not a religion with me. I hope it will improve my general health as well as slow the growth of my prostate cancer.

I've started a new page of my diet recipes. There are only 3 so far, but I'll add more as I develop them.

It is rather odd, as I think about it, that I am now trying to eat right, exercise, and "do the right thing" now that I have prostate cancer. My hope is that my PCa will not be aggressive and that I can live with it until I die of something else. Prolonging my life by "clean living" makes that less likely.

Perhaps I should do just the opposite; drink heavily, start smoking cigarettes, ride a motorcycle, engage in wild sex, etc. I have to remember the idea is not to live forever, but for a long time. Those activities would not bring that about.

The absolute best thing would be for someone to develop a cure for PCa that would remove that dreadful beast from me. I try not to think about a cancer growing inside me. It is little comfort to know that most men my age also have the beast, but many of them are unaware of it.

Just before I retired in 1992, my wife, Pat, asked me, "When do I get to retire?" Pat and I raised 6 children. They were all grown and had flown the nest when she asked the question. I was tempted to say, "Each time one of our chicks left the nest, you retired a little." Knowing that was a sensitive subject, I decided to say something else, like, "When I retire, I'll help you around the house because I'll have more time." I doubt that I convinced her.

About 2 years later, she had her fourth stoke which left her partially paralyzed on the left side. She has little use of her arm, but fortunately can take a few steps. When we travel it is safer for her to use her wheelchair.

Now I do all the matronly choirs like cooking, washing, etc. I'm not as good as she was in any of those things, but I like to think she had about 40 years more practice.

When I retired the mortgage on our house was paid off. It didn't happen by accident. I figured out what the payments would be so that it would be paid off when I reached 60, the earliest I could retire.

With my civil service retirement, social security (a pittance), savings, and some inheritances from Pat's side of the family, we are financial secure. My only financial concern was, and continues to be, long term health care in case we have to go to a nursing home.

In spite of Pat's strokes and general health problems, I have always thought I would "go" first. Her mother died at age 93 and her father was 85. My mother died when she was 70 and my dad was only 58.

Now that I have prostate cancer, I know my days are probably numbered. They were numbered before, but I didn't have as good an idea of what the number might be. I still can't get used to the idea of wanting to die of something other than prostate cancer.

I've never "wanted to die" before. I'm not afraid of death. I'm a Christian and believe that I will be in the arms of God.

With 6 kids who all love their mother, I'm sure Pat will have a home and be loving cared for. I have thought about planning it out with them, but I'm sure that would only upset all of us. Sometimes it's better to do nothing.

I have added my Prostate Cancer Homepage. It is an index to the rest of my pages. I also added some new icons at the bottom of this page that contain an abbreviated form of the index.

Green tea is recommended because it contains a powerful antioxidant polyphenols. The usual recommendation is 4 cups a day. I have one cup in the morning instead of coffee and another in the afternoon. I find it difficult to drink 4 cups so I came up with an alternate form; my Green Tea Sangria. It is easy to make and tastes good. It is also very refreshing.

  August 2000

I read Dean Ornish's book "Eat More, Weigh Less". I liked it. I recalled Bob Arnot's recent book. Arnot obviously liked Ornish's book too because he copied the format of the book. However, Arnot included more technical information.

I purchased Mike Milken's two cookbooks taste of living cookbook and taste of living world cookbook on eBay for 99 cents each (plus shipping, of course). They were very nicely done. They are printed on heavy clay paper and weigh a ton even though they are not thick. The recipes and photos are outstanding. I've tried several.

I also purchased and read William Duffy's book, Sugar Blues about the evil of sugar. If you are interested in the history of sugar, it's a good read. For me, the entire book could be condensed to one sentence, "Don't eat sugar, it will kill you."

I've been trying to eliminate sugar from my diet. I thought natural honey would be a good alternative. Now, even that, is supposed to be bad! I suppose if some of the PCa folks can learn to live without sex, I can learn to live without sugar, but it is hard....no! no!...bad pun!

Bernie Beskind wrote a very thoughtful piece on one of the PCa mailing lists. I received his permission to put it on my webpage. It is called MAKING MEDICAL DECISIONS - LOOKING DEEPER. For those of us that haven't decided on treatment yet, it is well worth reading and thinking about.

Today is August 8th. On August 8, 1952 I reported for duty in the US Navy. That was the time of the Korean War. I was very fortunate because I didn't see any action. Two years later the war was over and I was a civilian again.

One of my friends I met in the Navy was Marshall Werth. He had been in for almost 4 years and was trying to decide whether or not to re-up (re-enlist for another 4 years). His logic was that in only 16 more years he could retire.

It turned out that I graduated high school with his younger sister, Rita. About 30 years ago I met someone named Werth at our church. It turns out it was Marshall's older sister. She told me that Marshall had retired from the Navy.

It was very strange for me to meet all three Werth kids at different times, in different places, and under entirely different circumstances.

Now that I think about it again after all these years, I'll see if I can find Marshall on any of the Internet search sites.

While I was in the Navy I got very sick and reported to sick bay. I had a temperature so they admitted me. They took blood and ran several tests.

After two days they still hadn't diagnosed my condition. I was worried because I thought doctors knew all the answers.

In another day or two the tests showed I had "mono." A few days later I was released and in another month or so I was back to normal.

It wasn't the "mono" I remember so much. It's the doctor's not knowing.

That reminds me of the old riddle:

What's the difference between a doctor and God?

Answer: God doesn't think he's a doctor.

This afternoon Pat wanted a sub from Ollies. She selected a hot Italian sausage sub with provolone cheese, cooked green peppers and onions. That is one of my favorites.

Since I'm on a restrictive diet, I can't eat subs. It was almost torture to watch them put it together knowing that I couldn't have any. It would be much easier if Pat were on the same diet. I have to fix two different meals. One for her and another entirely different one for me. Her's always looks better.

There is some, but little, satisfaction knowing that my diet is much healthier.

My wife, Pat, asked me this evening about my next doctors appointment. I told her I didn't have one, but had another PSA test planned for the middle of September. I mentioned that if it goes up by very much, I'll have treatment.

She asked why I just didn't go get it over with now. I explained to her briefly about the side effects. Also I discussed that my cancer has been slow growing. I probably had it back in 1992 at the time of my first biopsy. I suspect the doctor just missed it.

I told her that if it isn't growing fast, I could just outlive it. Then I laughed and explained to her I should have said I could just "out die it." That is, I'll die of something else first. What a burden to think about-hoping to die of something rather than prostate cancer.

We all like to think we will live forever. However, the thought of dying is difficult to face. I always told myself that I would like about 5 minutes notice so I could say good-bye and pray for salvation from my Lord.

Pat complained that her sub was too spicy hot and ate only half of it. I saved the other half for her. In the past day or so, I've thought about that sub sitting there in the frig. Several times, I was tempted to eat it, but I resisted the temptation. It is easy for me to rationalize especially about eating. I resolved (rationalized) that if she didn't want it, rather than throw it away, I'd cut the half in half and have them for lunch for two days.

When I asked Pat if she wanted her sub for lunch, much to my surprised and disappointment she said, "yes." I cut the half in half. She ate one piece and said it was just too hot for her. Here I faced the final temptation. Should I eat it or throw away a perfectly good piece of Italian sausage, provolone cheese, green pepper, onion, and spaghetti sauce sub.

I'll let the reader ponder my decision.

We had Chinese carryout tonight. I found 3 fortunes in my fortune cookie. The first one read, "You never hesitate to tackle the most difficult problems." The second, "Fortune truly helps those who are of good judgment." The third was the same as the second.

Needless to say, I was taken aback. How did some Chinese guy know what I'm going through? Anyway, I thought about my decision again, as I often do.

  September 2000

This is September, one of my favorite times of the year. Leaves turn color and fall. Grass stops growing. No more mowing. I love the smell of the first crisp fall day. In our area we are no longer allowed to burn leaves. I loved the smell of them. I miss that smell.

Fresh cider will be available soon. I like the cloudy kind. The kind you can almost chew.

Some men who get PCa ask the question, "Why me?!" I haven't had that problem. Perhaps it's because I had cancer before. I'm not sure. One might ask, "Why not me?" The answer used to be obvious to me. No one should have cancer.

One of the disturbing things that is hypothesized about PCa is that we get it partly because of our diet, i.e., we bring it on ourselves. That is very upsetting.

Men who are sexually promiscuous or share needles bring AIDS upon themselves. Their powerful lobby makes them out to be victims. Money for research is greater for AIDS than prostate cancer even though many fewer die of AIDS.

One way to look at it is that AIDS research may be more important because it can spread faster. Prostate cancer is not contagious like AIDS.

Both my parents died suddenly. Dad about 40 years ago and mom 30 years ago. I expected to die someday. Everyone else will. I never considered having prostate cancer. Heart attack, stroke or some other major problem was the way I expected to exit this veil of tears.

This may still happen, but now I know I have another sentence lying in wait in the background. PCa (unless it is aggressive) takes a long time to consume you. Oh well, who wants to live to be a hundred anyway? The answer to that old joke is, "someone who is 99."

This month I have continued my special diet. I have radically reduced the amount of meat that I consume. I eat lots of tomato and garlic, beans, and soy. I drink green tea, take vitamins, and 200 micrograms of Selenium daily. I also limit my dairy intake, restricting it to skim milk on my cereal. I gave up sweets. It took a while to learn to like cereal without sugar. I use fruit instead.

This diet must have helped because my PSA dropped from 10.9 to 10.7 (my high was 11.1 about 10 months ago).

DATE	PSA
1996	9.4
1997	9.6
Nov. 1999	11.1
June 2000	10.9
Sept. 2000	10.7

I'm having my PSA taken every 3 months. I can relax for a while. My life seems to turn on 3 month increments now.

Wouldn't it be ironic if the discovery of my PCa actually prolonged my life because of my change in eating habits and life style. I might have prevented a fatal heart attack or stroke. Let's be positive and assume that it might have happened.

  February 2001

This Christmas season I did a little backsliding on my diet.

I was very apprehensive about my last PSA test which was on Feb. 1st. This morning I got the results. PSA=9.4!!! That is down by 1.3 points from my last test and the same as it was in 1996!

DATE	PSA
1996	9.4
1997	9.6
Nov. 1999	11.1
June 2000	10.9
Sept. 2000	10.7
Feb. 2001	9.4

The last few days I have been reviewing my plans if my PSA were to rise.

• Depending on PSA value I might have it retested.

• Get a compete physical examination.

• Attempt to make an educated guess about my life expectancy without any PCa treatment.

• Review my tentative decision of having both seeding and EBRT.

• Decide between treatment by Dr. Clarke at Alexandria, Virginia INOVA hospital or Radiation Clinics of Georgia. The advantage of Dr. Clarke is that it is only about 25 miles from me and would be much more convenient than Atlanta.

  (My wife is almost entirely dependent upon me so it would be a hardship on my kids if I go to Atlanta. It would be a much bigger hardship on them if I were to "GO!")

• Make treatment decision.

  July 2001

I was late getting my last PSA test. It weighed in at 10.8 up from my last one in February (9.4), but lower than my high of 11.1 in November 1999.

My diet and supplements may have affected the value because I have been much more lax about it...more meat and fats, less soy and green tea.

It's time for another physical exam and the ever extended, lubricated, gloved finger. I hope that I don't get examined so often that I begin to enjoy it!

If I have treatment at RCOG (Atlanta) I wonder if I will be well enough and strong enough to take Pat with me and be able to attend to her needs. She's in a wheelchair and needs help getting in and out.

From what I've read, dying of prostate cancer is horrible. I don't want to go that way. It's really strange when I think about it...I want to die of something else before I die from prostate cancer.

Most people don't think much about dying. I have a time bomb ticking in my body and am betting my life on my life ending before it goes off. Strange!

I shouldn't be so fatalistic. There is a possibility that a cure for prostate cancer will be discovered before the dragon devours me. I pray so.

I just came back from getting my anual physical from my internist. Everything was fine. He felt no irregularities in my prostate gland. (I noticed he used a double plastic gloove. If I had to do that to him, I'd use at least three.)

My blood pressure was 132/80.

My ticker was doing it's usual tricks.

I'll call Dr. Clarke tomorrow to discuss more diagnostic testing for my PCa as a result of my increasing PSA.

  October 2001

My October PSA was down from 10.8 to 10.2 ng/ml. It's not down much, but at least it's going in the right direction.

DATE	PSA
1996	9.4
1997	9.6
Nov. 1999	11.1
June 2000	10.9
Sept. 2000	10.7
Feb. 2001	9.4
July. 2001	10.8
Oct. 2001	10.2

I am scheduled for a stapler-assisted endoscopic Zenker's diverticulotomy at Johns Hopkins early on the morning of the October 31st. That's Halloween. I hope the spooks are friendly. They will remove an esophageal pouch that formed outside my esophagus. Food gets caught there and causes me to regurgitate. I call it "my feed bag."

If the operation is successful, I'll be home in a day or two.