Tuesday, February 5, 2008

INTRODUCTION

I was diagnosed with prostate cancer in 2001. I decided to record my struggle with this disease in the form of a journal. The journal is very personal, sometimes humorous, sometimes serious, but mostly informative, especially for newly diagnosed individuals worried about sexual dysfunction and those considering Watchful Waiting. On-line forums and discussion groups helped me tremendously years ago. I hope that my journal returns the favor.

Click on January 26 - February 23 on the left side of this page to begin the journal.

Friday, February 1, 2008

JANUARY 26 - FEBRUARY 23

JAN 26 Learned today what I suspected. Prostate cancer. Wasn't surprised. Listened eagerly as the urologist spelled out the options. Conservative management (Watchful Waiting) wasn't one of them. Surgery or radiation the only way. Immediately said, NO SURGERY! Would opt for radiation. Would have signed on then and there, but he said I should think about it and talk to others and access the Internet for more information. Urologist mentioned that chemical castration might be wise for 3 months preceding radiation. I winced and more or less said no way. Was relatively upbeat for the rest of the day . Called Dad and emailed the kids and Warren. Also told Barb and Ellen via e-­mail.

JAN 27 Went to the spa as usual and talked to a friend who has had prostate cancer for eight years. His tumor, however, is not as aggressive as mine, yet I did find comfort in talking with him. Emotions still OK. Still upbeat and positive. Still leaning towards radiation.

JAN 28-31 Mixed bag! Began intensive search on the Internet for information and guidance. Much that I saw was depressing. My mood began to change. Flipped-flopped between optimism and pessimism. Anxiety was VERY strong. Began thinking that NO TREATMENT might be desirable. Don't want the easy way out! Want the RIGHT way out. So many conflicting opinions. Becoming consumed by all of this! Literallly spent the past three days on the Net... .researching and emailing people. SINCE DIAGNOSED, NOTHING MUCH ELSE ON MY MIND BUT MY CANCER. Freida extremely supportive and understanding. Would really be out of it if that wasn't the case. Interestingly, we've become closer than usual. More touching, etc., not to mention great sex on Saturday and Sunday, perhaps because I fear that our sexual future, because of the disease, might not be optimal! I haven't cried yet and that surprises me! Though I remember not crying for Mom till the third day after she died. Thought I was numb and insensitive. Guess some crying will come for this too. Scared? I guess a bit. Uncertainty is the main thing. Still don't know WHAT to do. Aggressively treat it or sit on it?

FEB 1 Slept in this morning till 10:30AM!!! Must have been the physical work I did yesterday. Spent a couple of hours in the cold trying to repair the overflow pipe in the pond. Not as anxious today as I was yesterday. Mildly depressed. For someone who is clinically depressed (hard to believe that I've been carrying that with me some twenty years or so), I'm surprised that I haven't sunk into a really deep funk over this. More time on the internet and e-mail with cancer related topics. Still trying to get a grip of the proper course of action. Still confused. Still bewildered. Haven't ever ignored the stock market like this. Somehow money doesn't seem all that important right now. Positive note: walked a mile over at the spa this PM. Haven't done that in years! Got to say occupied, but that notwithstanding the cancer is never NOT on my mind. Haven't yet started feeling sorry for myself. Life is a crap shoot. I'm fortunate to have had the outstanding life that I've had. A wonderful wife and two adult kids who hopefully will survive me. I think about Manny Zuckerman and his loss and feel glad about my own circumstance. My kids have no idea how much I love them. Neither does Freida. I've always been so damn standoffish to them and everyone else in my life. Hard to express my feelings. At that, I've been a failure. Have decided to ask for a second opinion from a nationally prominent pathology lab of my biopsy results. Will see Dr. Cook tomorrow for his input. Just have to talk to someone!! Core question is whether throat or lung cancer gets me before prostate cancer! What's the point of treating something that's NOT going to kill me? Intellectually, as I read somewhere tonight, we all know that death is inevitable. It's not till your faced with something like cancer that it sinks in emotionally. It becomes reality. Questions involving quality of life and longevity whip you around tornado-like. My primary concern, and I mean PRIMARY, is the possible hormone treatments before radiation, if that's the route I take. From all that I've read, there is a chance of permanent loss of testosterone and, hence, sex drive. PERMANENT! I can handle incontinence and impotence, but to be sexless for the rest of my life is NOT an option. I've already decided that if I cannot have radiation without "chemical castration," I will simply watch and wait. The point is to shrink the prostate and tumor, making an easier target for the radiation oncologist. But my tumor is small as is my prostate. I will fight this one! Enough of this ... it's all too consuming! Thank God for booze! I can sleep nights at least!

FEB 2 I am physically and emotionally drained. This past week has been an emotional rollercoaster. Up, downs, and everything inbetween. I feel so very tired. But today may have been resolution as to what I will do. Larry Cook, my doctor, was very supportive and understanding. Spent a half hour with him. Made me realize that Watchful Waiting IS NOT one of my options. Prostate tumors grow much more rapidly in younger men, like me. This confirms the many messages I've received over the Internet from those that have gone through this same crap. Larry was gracious enough to give me copies of all of the reports from my urologist, Dr. Naylor. I will continue this tomorrow. Too much booze to be coherent tonight.


FEB 3 Much better day today. After I read Dr. Naylor's last report which said that my desire to forego chemical castration WAS ACCEPTABLE, I felt a great deal of relief for the reasons mentioned above. What irritates me is that when Taylor and I talked about this last week, he was absolutely non-commital about this issue, allowing me to squirm for a week! At my request, Dr. Cook has sent my biopsy slides to Johns Hopkins for expert analysis. The original pathology was done at Mercy Hospital. Everyone that I have talked to or corresponded with (including many doctors on the Net), feels that this should be standard operating procedure. There are a dozen or so "centers of excellence" in the country for pathology. I chose Johns Hopkins for no particular reason. Why didn't Naylor suggest this? Next appointment (to discuss my decision) with Naylor is next Friday, Feb. 9. Freida is taking off work to come along. At this point, I feel pretty comfortable with my decision to choose 3D Conformal Radiation Therapy. I don't want that cancer in me, so let's go for it despite the ultimate side-effects. I 've been much LESS preoccupied with the disease all day. Encouraging!


FEB 4 Today was another good day. Spent little time on the computer regarding the disease. Feel that I've come to accept the reality of it all and, compared to many of the horror stories I've read on the Net, I even feel kind of lucky to have the low level cancer that I have! Some guys are just going through living hell and I feel for them. We spent part of the day forward-looking . . .to our future fantastic trip to the Yukon and Alaska. Still blood in the semen and a drop or two after straining at the stool Freida thinks she's menstruating again! LOL. I am concerned about whether the cancer has already spread outside of the prostate. This is a major question for Naylor on Friday. Saw a distant herd of about 13 deer over on campus at twilight.


FEB 5 Another good day. Freida expressed surprise that, given my chemical depression, I haven't sunk into a deep funk about all of this. I have come to some kind of understanding about my mortality and death, at least in general terms. It's all a little vague right now. Think I'm a lot more worried about the inevitable lung cancer than I am about the prostate variety. Not as well treatable and death follows quickly upon diagnosis in most cases. I don't have a clue as to why I'm keeping this "journal." Maybe it is a form of therapy. I do know that I want the 3D Conformal Radiation Therapy to start as soon as possible! The good thing is that I'm no longer dwelling on this, and that's healthy in of itself! Life goes on and one must make the most of each and every single day.


FEB 6 Lethargic and mildly depressed today. Not specifically cancer-driven. Just life in general and my clinical depression kicking in. Nothing unusual. Surprised it hasn't happened earlier. Still not dwelling on the prostate thing. Still think, as I told Dr. Cook, that either throat or lung cancer will get me before prostate cancer. My previous argument was that because of this, WHY do ANY treatment. I've since concluded that such a decision would be shortsighted. Some people smoke all of their lives and die at 85 in a car wreck. Maybe I'll be one of those! Sure!


FEB 7 Carryover from yesterday, but not as bad. Having MINOR second thoughts about my decision. Worried about peeing in my pants the rest of my life. Not so worried about impotence, since I'm somewhat there already and Freida and I have always been able to deal with it. There is SO MUCH negative sentiment out there about the prostate cancer treatments. But I've decided, and that's that. There will ALWAYS be second guessing now and down the road, but one has to make up his mind and stick to it.


FEB 9 Freida and I met with my urologist this morning to discuss treatment. Told him at the outset that we have opted for 3D-CRT. Had many questions, which he answered to our satisfaction. Chose to do the radiation at St. Luke's, mainly because it is closer to home, not to mention the fact that it is ranked in with the top 100 hospitals in the USA! Somewhat depressed for the rest of the day. Not sure why, but cripe for 25 years I've never known what triggers the depression. The weather changed today, so that might be it. Uncertainty and fear regarding the cancer might have done it. Second guessing my choices - treatment and hospital - might have triggered it. Who knows! E-mailed Gregg, Jane and Warren, supplying them with details about the 3D-CRT treatment. The thought of being permanently impotent is grating at me more than I thought it would. Even broached the topic of penile implants with Freida . She's been extremely supportive. Not too many that would settle for someone to cuddle as opposed
to a hunk! Love is grand and so is life! I've got so much to be thankful for. To be sure, I've done my share of suffering. Only a fellow stutterer knows what that means! From Day One, it has been Hell! But I was able to overcome it (or at least fake it) for the sake of my family and career. And I beat overwhelming odds! First professor at the University to be awarded the Great Teacher award! Wow! I would love to dig up the bodies of those people at California State Teachers College who told me that I would NEVER teach and show them that award. I'm off topic, so I'll close for tonight.

FEB 10 Depression has lifted for the most part. Had a good day. Have got to maintain and upbeat attitude and avoid stress. Radiation alone isn't going to whip this. A positive attitude is a MUST and for me that is not always easy to do, but I'm trying.

FEB 16 I'm back. Been a pretty good week, but today was bad. Heavy depression. St. Ritas finally called and my initial appointment is on Feb. 23. I'm not sure I'm doing the right thing! So many negative posts on the Internet about ANY medical treatment. Many stress alternative stuff- Chinese herbal cure, etc. Very confusing and disturbing. DAMN IT! Like I told Freida about an hour ago, Hiroshima victims never asked for their radiation, but I'm volunteering!! Gotta wonder. I also said to Freida that it is not a matter of being scared, BUT not knowing if what your about to do is RIGHT!!! I mean, they are going to blast my prostate with radioactive beams! Whoa! About being scared . . . you bet! Shaking in my boots!
FEB 22 Just e-mailed Dr. Cook. Asked if he could expedite the second opinion on the pathology from Johns Hopkins. I WILL NOT have my prostate burned until that second opinion is in! Damn it, it might be a Gleason score of 3, 4, or 5 and if so, I will "watchfully wait," rather than submit to a life-altering treatment! The one thing I've learned about prostate cancer is that it is VERY CONTROVERSIAL . What to do, when to do, how to do, etc. It's really mind boggling. Been doing some serious reading about penile injections should that ever become necessary. I've stayed up later than usual these past two days, probably in anticipation of my Friday appointment.

FEB 23 Spent two and a half hours at the Radiation Oncology Center (St. Luke's) this morning. It was more or less just an introductory session. The regular radiation nurses were busy elsewhere, so I had a substitute nurse named Kelly, who had mountains of paperwork to do. Saw a short videotape on what to expect in my treatment. Discovered little which I didn't already know. The radiation oncologist finally showed up about an hour or so into the session. Her name is Dr. Timmerman and we hit it off very well. One surprise was she said that I will have 42 sessions of radiation . . . that's 8 1/2 weeks, longer than what the literature normally suggests (6-7 weeks). For some reason, I didn't follow up with a "Why?" question. I will next time. A couple of comical moments: When I started to lower my sweatpants for a DRE, Dr. Timmerman told me to wait a minute until she could arrange for a screen. The pull-around ceiling mounted screen was missing (laundry?), so Kelly was called into the room and told to make a screen with a bed sheet. So here I am with one woman sticking her finger up my ass, while another woman is standing in front of the door holding an outstretched bed sheet under her chin (guess she wanted a view!) Guess that's about as close to a menage-a-trois as I'm ever going to get!!! The screen was necessary to ensure my privacy in the event someone accidentally came into the room, something they said was a common thing. Well, Kelly peering over that sheet was hardly one of my more private moments in life! LOL. I REALLY wanted to say something "cute," but I held back. Dr. Timmerman said that the tumor was basically what my urologist had reported and she was impressed with the smallness of my prostate .... makes an easier target. She also said that because of the tumor's location, surgery would be somewhat difficult and that 3D-CRT is definitely the best choice of treatment. My next appointment is next Wednesday (Feb.28) at 1PM, having explained to them that I am definitely not a morning person! The cat-scan and various other procedures (lower-body cast and body markings) are scheduled for that time. When I thought I was about done, Kelly announced: "Oops, we forgot to draw blood." So she went out to get the appropriate materials. Upon returning, and after she had cleaned the vein with alcohol, she said: "Now where did I put that tourniquet." So off she goes again to find a tourniquet. Upon return, we get down to business. Found a nice vein (unusual for me) and proceeded. Normally I don't look when my blood is drawn, but after I heard her talking to the syringe, trying to coax the blood out, I looked! She was wiggling the needle back and forth, trying to fill the tube. Then blood started coming out along the sides of the needle, so she pulled it out and cotton swabbed it. She only had about 1/3 of the tube and went to see someone else to see if it was enough. Thankfully it was! Then, because she had oversized rubber gloves on, I had to help her put on a bandage!! Wonder how the regular radiation nurses are?

FEBRUARY 27 - MARCH 12

FEB 27 Not a good day. Been worried the past couple of days about insurance coverage. Many phone calls and e-mails. Between my policy with the University and Freida's coverage, we should be OK, but some out-of-pocket expense will certainly occur. The so-called "cancer policy" we have (since 1983) appears to be worthless!! Had an outburst. Was mad for the first time about all of this. Central question: with all of my current physical problems, WHY OH WHY submit to eight weeks of radiation for something that probably won't kill me before something else does. DAMN IT! Maybe I'll skip tomorrow's cat-scan and go out into the woods and sit under a tree and die like the Indians used to do! Somewhat suicidal! Freida has never understood the constant pain and discomfort I exist with!! Her health problems are so minimal, so she just doesn't get it!

FEB 28 Spent two hours + at St. Luke's this afternoon. Radiation therapist constructed my leg restraints and did some measurements, marking certain locations on my lower body with non-permanent ink (the permanent ink comes later). Then off for my cat scan. Began with an IV of saline fluid for about 20 minutes, then into the machine with IV still attached and using my new leg restraints. More measurements and markings, injection of dye into the IV bag and then the scan itself. All uneventful until it was over. Armpits began to itch like crazy, then my upper chest. Had an allergic reaction to the dye. Upper chest was red and had a dozen or so hives. IV remained in for another 15 minutes. Nurse directed me to stop at a pharmacy and buy Benadryl, which I did. Got home and read the Benadryl instructions, which included a warning not to be taken by anyone with emphysema, which I have. So I didn't take any! Redness and
hives are nearly gone anyway. Have two more planning sessions before the actual radiation treatment begins. The next one should prove interesting: they will pump dye up my urethra into my bladder and clamp my penis so it doesn't leak out!! Can't wait for that one!!!

Mar 7 Another hour at St. Luke's this morning. Many x-rays, measurements and body markings. Got three permanent ink markings. They put a dab of ink at the correct spot, then push it into the skin with a needle, similar to a tattoo. The pumping dye into my urethra was not as traumatic as I expected. Kind of felt like "peeing backwards." Things are moving quickly. Will have a dry-run (simulation) treatment on this coming Friday (3/9), with actual radiation beginning on Monday. Still haven't heard from Johns Hopkins regarding the "expert" opinion on my biopsy slides. E-mailed Dr. Cook last night. Here is a copy of that e-mail:
Hi Dr. Larry. Going to pump dye up my urethra tomorrow morning (can't wait). Actual radiation should begin in less than two weeks. Any word from Johns Hopkins? I must have their take on my biopsy slides pronto! From every thing I've seen and read, I'M ADAMANT THAT IF HOPKINS REPORTS A GLEASON SCORE OF LESS THAN 7, I WILL WATCH AND WAIT. Being my stubborn self, I just may do that regardless!* Best wishes, Bob.
*Famous last words!

Mar 10 Simulation went well yesterday. Radiation begins Monday at 2PM. The 2PM time is great for me. I'11 be able to get zapped, get my steam at the Y or spa, and be home in time enough to watch the last half hour of stock market quotes. The second "expert" pathology report came yesterday too. Good and bad news. Bad: The all-important Gleason score didn't change enough to allow me any other option but to proceed as per schedule. The old score was 3+4=7 (aggressive), while the new score is 3+3=6 (moderately aggressive). That's the good news for what it's worth. I was hoping that the first path report may have been an error and that my Gleason score was actually in the low range (1, 2 or 3). I would have definitely canceled the radiation had it been so. Alas, no such luck! The problem with prostate cancer is that "to treat" or "not to treat" is HIGHLY controversial. There are very many people, including M.D.'s, who denounce urologists and oncologists as money-hungry charlatans who overly treat to line their pockets. There are so many "alternative treatments" (taking dozens of different herbs, redoing one's diet, snake-oil in general) out there that one's mind in literally numbed. Well, we've made our decision and will hope that the much dreaded side-effects are minimal. Still up-beat, though this past week was a bit depressing. Stock market hasn't helped much either!! Between Freida's major health plan increase (nearly $200 more per month) and my pension loss (about $100), we'll have $300 or so to work with monthly. Not a major blow, but $300 we'll not be able to squirrel away.

Mar 11 Radiation begins tomorrow at 2PM. I am comfortable with that. Not at all anxious or apprehensive. Mood is good; still upbeat. Just another night for me! Certainly worried about the long-term, but not enough to let me lose sleep. I know I wouldn't be saying that if I were facing surgery tomorrow. Geez, I'm such a wimp! On a whimsical note, told Freida this morning that she's seen the last of "regular" cum. From this point on, it will be green and glow in the dark! LOL.

Mar 12 This is fast becoming a comic opera. It's two and a half hours before my first scheduled dose of radiation and, lo and behold, the telephone rings. It is St. Luke's with the announcement that the radiation machine is broken and needs a part, so don't come in today! Should be up and running tomorrow, though. Talk about anxiety! I was OK till that call, now I have all kinds of crazy, but I'm sure misplaced thoughts running through my head! Wonder if I broke the machine on Friday or, worse yet, wonder if the machine was already broken when we did the simulation!!! Add to this the fact that Dr. Timmerman, the oncologist, began a one-week vacation today. A substitute from another hospital is in temporary residence. Sure hope his/her name isn't KELLY!! Well, Freida will have plenty of ammunition to sue them if they fry the wrong organ! Wow, my updates are better than some of the jokes and cartoons I send out! LOL.

MARCH 20 - APRIL 30

Mar 20 Radiation began a week ago. Today was burn #6. Just 36 more to do! Pretty much routine already. Five days a week at 2PM, though they've rarely been on time. Mondays, Tuesdays and Fridays are a bit longer: Mondays I see the oncologist; Tuesdays they take film (to ensure they are aiming right); and Fridays I see the nurse for vital signs, etc. Weekends are off to allow the healthy cells exposed to radiation to heal. The cancer cells also repair to a degree, but not as rapidly as the healthy ones. Doctor answered many of my questions yesterday. Yes, radiation can cause other cancers and a breakdown of one's immune system, but we're looking at 20-30 years down the road. Routine bloodwork, which is common with many cancers, is not necessary for prostate cancer. No particular reason why she chose 42 treatments. Standard procedure at St. Luke's. She did not object to my refusal to be chemically castrated because of the smallness of my prostate and complained that too many urologists over use this procedure for $$$. Surprise, surprise! She wasn't impressed with my Johns Hopkins "expert" pathological report which lowered my Gleason score from 3+4=7 to 3+3=6. Better prognosis, to be sure, but not enough to alter the radiation schedule at all. Some humor:Went to the spa at 12:45. Did my rolling machine bit, then steamroom. Showered and toweled off. As I dressed, I noticed that my shoes and socks were GONE! A couple of guys helped me look through all the empty lockers; the manager searched the entire premises. No socks and shoes to be found and my appointment at St. Rita's just a quarter of an hour ahead. A buddy loaned me his size 12 tennis shoes so that I wouldn't have to walk into the hospital barefooted. Talk about looking like a circus clown! We all thought that Keith, the spa prankster was responsible for the missing shoes and socks (he's
done it before to others), but as it turned out a guy with severe Alzheimer's had walked off with them! What a hoot! All's well that ends well.

Mar 23 Preventative maintenance scheduled for the radiation machine this afternoon, so treatment was moved up to 8:50AM, In and out quickly; back home by 9:30AM. Drew blood and checked my vital signs. Blood pressure significantly lower than last week. Still very upbeat! Looking forward to a two day rest, though.

April 2 Zap # 15 today; 27 to go! The worst part of this is that I'm on a schedule . . . just like working again!!! More frequent peeing with some urgency and some burning. Oncologist told me today, after waiting 45 minutes after the Zap, that I will probably get worse. Feeling more tired than usual; little chores outside tax my stamina. The pictures they take (tomorrow), are to see if they are "aiming" right! Dr. Timmerman, a really nice lady, calls me "Doc", knowing I have a Ph.D. Not many MD's would be so gracious. Complained that their blood pressure
machine hurt honestly thought that it was so tight that it cut off circulation to my lower arm. Said that they won't use it on me anymore. We'll see.

April 10 Zap #21 today!!!!! Half-way home. Only 21 more to do. Actually, I should say "zaps" rather than "zap." I have three permanent tattoos the radiation technologists use to position me on the radiation table, using laser lights. One on each hip and the third about an inch above the base of my penis (they've trimmed my pubic hair twice so far). The procedure is that I sit bare ass on the table with my hospital gown on. A therapist then slides my leg cast under me. Then two female therapists on both sides of me take a towel and slide it under the gown to cover my privates. Then they flap up the gown to my chest and move the towel down just far enough to see the middle tattoo. About half the time they go too far and have to back up a bit!!! Giggle!
Then, with the lights off, they align me according to the red-line lasers. They then leave, the room lights come on and the foot-wide lead door is closed. I get six individual zaps, all at different angles. The first zap is about 4-5 seconds aimed at the left hip tattoo; the second is about 10 seconds aimed at the same tattoo; the third is about 4-5 seconds aimed at the pubic tattoo; the next three zaps are identical on the right side. Amount of time on the table is about 10 minutes. Amount of time at the Oncology Center varies between a half-hour and an hour and a half. Mondays are longer because I have to see the oncologist; Tuesdays are longer because they take pictures; Fridays are longer because I have to have my vitals done or have blood drawn. Side-effects are right on line: more frequent and urgent urination with burning (the bladder suffers collateral damage, as does the rectum). The diarrhea phase may have started this morning, though it may have been the tainted prime rib we ate last night at a restaurant!! Unfortunately, Freida reports no problem! LOL. Oncologist tells me that my normal "walnut-size" prostate will end up like a quarter (coin). Ah, the power of ZAP! Still in good spirits and very positive!

April 13 Good Friday. We had intended, as usual, to visit Jane and Doug in Louisville for the Easter weekend, but didn't want to chance it because of the side-effects of radiation. So we stayed home and I had zap 24 (18 to go). I had the option to skip today, but obviously passed. Burning pee continues as well as urgency and heightened frequency. Had diarrhea on Tuesday and Wednesday, but has since subsided. Starting to read up on and pay a little more attention to what I should be doing diet-wise. Off of orange juice and tea; try to eat at least one banana a day, and cut back on the coffee. Booze is a no-no too, but I can't deprive myself of everything!!

April 30 Really nothing urgent to report. I have eight treatments (out of 42) remaining and still no major side effects. To be sure, I'm pleased as punch. But, like the oncologist advises, I'm not counting my chickens before they're hatched. Burning pee is about the extent of it, along with occasional fatigue (not as bad as I had been told to expect). Still maintaining my daily schedule: Watch Freida leave from the bedroom window at 6:45 or so; back to bed for at least an hour and a half (sometimes WAY longer); get up and wake up the computer to check e-mail and the stock market; take my pills and give Gizzmo his pills (he's a good pill taker); do some housekeeping, but haven't been making the bed (like an occasional short nap); take Gizzmo and me for a walk down the road; resume computer activity, playing Bingo (and making money) along the way; more housework, then lunch (hooked on Lipton's regular Noodle Soup or the bountiful doggybag chow remaining from our favorite restaurants. Have been eating our own fresh green onions for over a week now; radish should be ready in about a week. Of course, I'm not supposed to be eating onions or radish!!! LOL. Upbeat as hell! Gonna beat this insidious disease! The quarter sized growth on my arm, which was biopsied, was NOT malignant! Very relieved! Didn't want to fight two cancers at the same time!

MAY 10 - FEBRUARY 6

May 10 It's over! Final treatment this afternoon (42 of 42). Aside from burning pee and extreme fatigue, looks like I was able to avoid other more debilitating side-effects. The oncologist is amazed, especially since I really didn' t follow the diet they suggested (some exceptions). The radiation therapists presented me with a signed "graduation certificate" and a metal button which reads "Rad Grad." Many hugs and handshakes. They were an outstanding group of people to say the least. Whether they were able to destroy the tumor remains to be seen. Won't know anything for three months.
They can't do a DRE because it would involve tremendous pain and a PSA blood analysis would be meaningless at this point. The last three zaps were directed at a narrower field (similar to the narrowing at treatment #30). I see my urologist next Friday, probably just for chit-chat and to see how I'm doing. I'll have my first PSA analysis on August 9 and a meeting with the oncologist on August 16 (results of PSA analysis and DRE). As I understand it, the PSA reading should be less than one (1) if the "cure" was effective. Let's hope!! Of course, even if it is, that doesn't mean I will be prostate cancer-free forever. One of my spa friends, for example, had 3D-EBRT eight years ago and was proclaimed "cured." Well, he's got it again! But, he did buy himself at least eight years! Can't close without a little humor!!! Last Thursday, I apparently undressed and got into my gown quicker than usual, showing up at the radiation control booth and taking a seat right outside. One woman technician says: "Who's up?" Another says "Doc." Another woman technician comments "Oh, that young stud." The first technician looked up and saw me sitting there and said: "Oh, Doc, how much of that did you hear." I, of course, just broke up and said "All of it." The radiation session that followed was hilarious, with the "young stud" nurse taking much "abuse" from her colleagues and me. What a hoot!

May 11 Not a good day. Very depressed, almost suicidal. Don't feel good physically. The news of the cancer "smart pill" just came out. Should I have waited? Moot question. Spent 9 weeks destroying one of my organs and don't know yet about all of the consequences and ramifications. Have no interest in sex and that's bothering me a lot. Starting to feel like my Dad . . . pissed off at the world and all of the unfairness out there. DAMN!

May 18 A week has passed since my last radiation treatment. My spirits are higher than last week, but I've been really fatigued, much more sothan during treatment itself. Saw my urologist this morning for a routine follow-up. Will establish a pattern where he and my oncologist will alternate DRE's and PSA analyses every six months. I'll see the oncologist in August, then the urologist in February, etc. The hope is that the PSA will be considerably lower and, over a period of two years, become stable. If the PSA begins to climb over this two year period, it will suggest that the cancer has not been fully contained and that it has spread to other places, the bones in particular. At that point, hormonal therapy and chemotherapy come into play. The urologist likes his statistics. He gives me a 90% chance of the PSA stabilizing and being prostate cancer free for the rest of my life, but there aren't any guarantees! It is obvious that in one way or another, cancer has become and will remain a part of our lives. It certainly has become a regular part of our thinking, though not in a debilitating manner. In answer to my question "How do we know that the cancer hasn't already spread," the answer is "We don't." Only after a careful monitoring of the PSA readings will we know for sure. One way of looking at it is that the nine weeks of radiation therapy represent the opening chapter of a story whose ending is not especially clear at this point. We can live with that, at least for the time being.


Aug 7 Had blood drawn yesterday at St. Luke's for my first post-radiation PSA. Will see Dr. Timmerman on the 16th for the PSA numbers and a DRE. Somewhat uneasy. Uneasy? "Worried" might be the operative word! What will be, will be. It has been a Summer of on-again, off-again depression and "feeling-sorry-for myself." Sex drive is zero and non-sexual erections few and far between. Very frustrating. I have so many physical and mental problems that two hands with ten fingers can't count them, making me irritable and hard to live with. Sometimes I wonder if life likethis is worth it! Gut pain is driving me crazy. Hard to function, let alone want to have sex, with it! Not suicidal, just pissed-off! Again, thank God for booze. Enough of it kills the pain and allows me a good night's sleep. I think Freida thinks that I'm rejecting her, but that's not the case at all. It's the pain and discomfort, damn it!

AUGUST 16 - FEBRUARY 6

Aug 16 Saw my oncologist this morning. My PSA has dropped to 0.97 from 5.3 before the radiation. The doctor was extremely happy with that number and said that she would have been happy with any reading below 2 . 65 (half the previous high) . She anticipates that my next reading will be even lower.
The PSA number is an indicator of cancer growth or non-growth. If it remains low and stable, cancer probably isn't present; if it begins to climb, it is an indication that the cancer has returned and/or spread to other areas of the body. So I will have several PSA tests (blood drawn) annually for the rest of my life. The rectal exam (DRE) went well too. The doctor's exact words were: ""Not much left of the prostate. It's flat and there are no nodules." Sweetest words I've heard in a long time!! So, officially, my cancer is in "remission," at least for now. The radiation apparently did the job, but as I've noted previously, a cancer-free future is not an iron­clad guarantee. But we're upbeat and positive about these recent developments, to say the least.
This morning's session with Dr. Timmerman was my last (unless, as we joked, another part of me needs zapped in the future) . I earlier thought that she would be seeing me on-and-off for a couple of years, but such will not be. I'll be totally in the hands of my urologist from this point on. Next appointment with him is in February. I will miss Dr. Timmerman, an outstanding person. Of course, a great hug concluded our session!

Sept 6 Been depressed for the past month. Cancer-related? Who knows? All other "problems" are intensified, especially the IBS. Saw Dr. Cook and he prescribed a new anti-depressant, which I will be taking whenever it arrives from our mail-order pharmacy.

Oct 26 The anti-depressant didn't make any difference, so I'm off of it. Have stopped taking all prescriptions except my high blood pressure pill and an aspirin a day, coupled with zinc, Vitamins C, E and A. Even stopped the over-the-counter joint medicine. Hate pills with a passion. Anxiety levels were VERY bad after the 9/11 attacks, but since stopping the anti-depressant (which had as a side effect heightened anxiety) I've calmed down. The good news is that the last of the insurance stuff has been settled, I think. I haven't really added up the total cost, but it certainly was in excess of $50,000. The insurances, both mine and Freida's, covered at least 99% of that, and for that we are grateful, recalling my earlier worry that we might get stung bad. Still have burning pee and a general feeling of being tired. Recently, some "burning" with bowel movements.

Feb 6 Just returned from my urologist's office. Had blood drawn a couple of weeks ago for the PSA, and the results are very good: down to 0.65 from the previous reading of 0.97. The doctor was very encouraged. Don't have to do another PSA for a year!! Now, if I could just get rid of this bad cold I've had for over three weeks. We're both tired of me smelling like Vicks and seeing the steam-vaporizer sitting on the dining room table! Ready to move South!!!

FOLLOW-UP

This journal covered my prostate journey from January 26, 2001 until February 6, 2002. My annual PSA readings since that time have remained positive - all below 1.0 (last tested in June 2007: 0.82). My urologist declared me prostate cancer free in 2005.

So, would have I pursued the same course of action described above if I could turn back the hands of time? No easy answer here. For all intents and purposes, my sex-drive is non-existent, one of my worst fears at the outset of this journey. Even if I had some libido left, the problem of erectile dysfunction would still exist. Additionally, I've developed other serious health problems (not related to the prostate cancer) which will probably take me out before I reach 70. Being only 66 now, that is a grim prospect. Whether the prostate cancer would have "got me" first (which I tend to doubt) is anyone's guess. My initial decision to treat the cancer, rather than "watchful waiting," was a crap-shoot or a coin-toss. Right? Wrong? Who knows?