.
January 6, 2002

>>>“What a difference a year makes!”
— Early in 2000, at the suggestion of Dr. Stephen Strum and Harry Pinchot, I went south to Oceanside, CA to have a battery of tests done — ProstaScint scan, CEA Scan and colonoscopy. This, mainly because of a CEA blood number of 898.5 when it should have been around 2.0 — the PSA number had started climbing rapidly again from a low of 1.42 to 6.20 (it was 81.05 before the orchiectomy on 03/19/99) and a PAP number that on 02/26/01 would rise to a high of 20.07. The large lesion in my pelvis was once again beginning to cause me pain when I walked.
— And now here I am at the beginning of 2002 in much better shape. My last blood numbers taken 01/02/02 were PSA < 0.03, PAP < 0.9, CEA <68.6. No pain and a recent bone scan that showed the lesion in the pelvis had stabilized and had actually decreased in the degree of activity. What with the unbelievable response of so many good people ordering the $100 "special edition" of my new book LET IT BE A DANCE - Words & One-liners, this translating into much needed financial help with the oral medications Medicare doesn't cover. In fact, I almost feel guilty that I'm not dead yet. Of course, the reason I'm doing as well as I am is a direct result of being able to afford PC SPES (not FDA approved) and other expensive drugs like Dostinex.
— Actually there are a number of things I attribute all this improvement to. A couple of my navigators (doctors, PC survivor advisors, etc.) familiar with my situation from the beginning tell me now that a year ago they weren't sure I’d be around to ring in the 2002 New Year.
— I'll list here the 10 things I did in the year of "Dancing with Doctors" and in order of importance, at least in my mind. You may be surprised that the top five don't have much to do with the “treatment and cure” side of the equation.

.
1. Attitude
2. Support Group work
3. Exercise
4. Aredia, Diet & Supplements
5. Internet capabilities
6. Strengthen bone — immune system
7. Blood tests - bone scans
8. Radiation
9. Chemotherapy
10. Surgery
>

— After my next visit with Dr. Hausdorff, my oncologist, (01/22/02) I will run down the list of my “Top 10” in dept. But in this “Latest Update” I will only expand a bit on number 1 — Attitude.
— If one is lucky enough to catch PC early, of course, cure is possible. But when diagnosed, I was already metastatic, soon to become hormone refractory (androgen independent) and hung out to dry with no known “right way” to treat the disease. In other words I had to learn how to live with a death sentence — going to the end to deal with my own mortality before I could return with the right attitude and begin fighting the good fight.

.
fragment from ROCCOONS

yes, I have been diagnosed
with incurable prostate cancer
but don’t be sorry for me
be envious

I mean think about it boys,
think about it
we are born — we live — we die
so what’s different now? Not a thing!
except being blessed with a constant reminder
to never let another unexplored moment
slip by

my condolences to those
who fall prey to the fatal surprise
the unexpected cardiac arrest
the sudden traffic casualty
forced to depart
short of a conclusion
short of the all important "good byes"
+++

..
fragment from POOR DEVIL

how much fuller
richer and pleasing life becomes
when you are lucky enough
to see the arrow coming
+++

.
February 10, 2002

THE TOP 10 REASONS WHY
I'M DOING AS WELL AS I AM
In order of importance — at least in my mind
And that's where it counts most.

1. ATTITUDE – Be Philosophic — Be Creative
   — For me developing a philosophy around this, as my doctor put it: “No right way to treat” disease, was the first thing I had to do. I needed to say the word “terminal” out loud, then elbow terror and fear out of the way and go to the inevitable end to shake hands and make peace with death. After which, with a jaunty: “See ya later alligator but don’t count on when!” head back to where I was and there begin to make my stand. Too many stoic types try to live suppressing unspoken fears and that’s not living.
   What I mean by “be creative” is to start telling your personal story, journaling, expressive writing, letters, art, etc., in my case poetry and musings — about everything that happens, even as it is happening. I recently came across a wonderful article on this subject by Sandi Stromberg entitled MIND MATTERS: Scientists Study the Impact of Expressive Writing on Cancer” It was in NETWORK Newsletter, a publication of the MD Anderson Cancer Center. Click HERE — I think it is an important read
   
   

2. SUPPORT GROUP INVOLVEMENT
   — In a room full of fellow survivors the story you have to tell never falls on deaf, uninterested ears. Plus, much healing comes in the act of listening to and helping others — there is empowerment found in the group experience. Because of my on-line web site presence, I constantly get phone calls from around the country — people, not necessarily all male, who, after reading my “Prostate Cancer Odyssey” just want to voice their story to a sympathetic ear. These calls sometime last for a half hour or more and when we hang up I can’t tell you how much better I always feel. And I believe “feeling better” and “survival” go hand in hand
   
   

3. EXERCISE & STRESS MANAGEMENT
   — “Use it or loose it!.” Trite, but true. My wife and I walk two strenuous miles a day in the Big Sur mountains, rain or shine, telling stories to each other as we move along. The kind of intimacy this engenders makes teenage sex look like child’s play.
   — I do Tai Chi — 40 minutes in the morning before doing anything else. Accompanied by a soothing, I would once have said “boring”, New Age type music. It’s not good for me to start a day off with worry. With the unsaid — “what if?” — “when the time comes,” — “what then?" Studies show that folks who have a way to deal with stress get well quicker, live longer and generally do better than those who live in a constant state of repressed anxiety. I don’t care how rational and conservative you might be, a little Ommmmmmmm or two in the morning, can do you a world of good. Better that, than continually conjuring up deathbed scenarios.
   
   

4. DIET & SUPPLEMENTS
   — Diet — For some reason PCa patients really resist the idea of diet. I did at first but became Vegan nearly two years ago. I even find that most MD’s don’t give much credence to the: “Watch what you eat!” battle cry. But again, studies are showing that all dairy, most oils and fats, egg yokes, sugar, alcohol are not good for prostate cancer patients. And along with this there are a number of foods that actually combat PC — tomatoes, fruits & veggies, shitake mushrooms, to name a few. And if the studies are wrong who cares as long as my mindset says that I’m helping my situation by paying attention to what I eat. I have taught myself how to gourmet cook with these restrictions and to my present pallet everything tastes delicious. Supplements? — I did a little research and take quite a squadron of caps and pills each morning and evening. In other words, what I’m attempting to do here is make my body as hostile a place as I can for cancer to thrive in. Why risk throwing gas on the fire?
   
   

5. INTERNET ACCESS
   — Of course there are lots of sharks circling in the world wide web waters. But that is what the Support Group Forum is there for. Check everything you find out with your brothers. But if you allow yourself to remain computer illiterate, and at the same time refuse to join a support group, you are all alone. Stranded and left completely on your own.
   — I found two of what I believe, are the central reasons for my present state of well being - PC SPES and SPES. If you go to my flow chart — click HERE — you can see the dates, doses and how the blood numbers reacted. I also searched for and found some prostate cancer specialists at (PCRI) Prostate Cancer Research Institute. Navigators, I call them, and in concert with Dr. Hausdorff, my oncologist, talk all the on-line suggestions over before acting. Sometimes he objects, sometimes he agrees but always in the end he monitors what I have decided to try. After all, he was the one who said it in the first place. “Ric, you have a disease that there is no right way to treat."
   
   

6. AREDIA, ZOMETA (Biophosphonates)
   — This has more to do with the seedbed than killing the cancer that grows in it. (In fact Doc Hausdorff, my oncologist gave me the idea for the garden metaphor used in the poem above) Early on I started an Aredia drip every 3 weeks. To strengthen and harden the bone. Perhaps we can wall the cancer off by making the ground more resistant and harder for the bone mets to invade. Also find ways to strengthen the Immune system, like using SPES an herbal Dietary Supplement.
   
   

7. BLOOD TESTS - BONE SCANS
   — Find out what the whole PCa recommended array is and have them taken — maybe once a year. Just to be certain something unusual isn’t going on. In my case I asked for PSA, PAP, CEA, NSE, CGA, Prolactin. For the first year and a half we monitored only the PSA. But when the PCRI folks started bugging me to get more blood numbers than just the PSA we did and although at the time my PSA number was a modest 1.53, my CEA came in at 898.8. and rising. Could have meant nothing but also could have meant that I had another form of cancer, like colon cancer, or a form of prostate cancer, SmallCell, that produces CEA. And so because of this I went South to Oceanside for tests — ProstaScint (much controversy over the reliability of this one) and CEA scans and a colonoscopy. The “up your butt” procedure came clean but both the ProstaScint and CEA scans showed hot CEA activity in the big lesion in my groin.
   
   

8. RADIATION
   — It was decided that we radiate the trouble spot. 3D Conformal Beam Radiation. During which the PAP blood number began falling immediately. The PSA continued drifting down and a follow up bone scan showed less activity in the big lesion. However I went off chemo while on radiation and during that six week period the CEA that had been falling started rising. As soon as I resumed chemo the number started back down. See flow chart.
   
   

9. CHEMOTHERAPY
   — I’m doing what they call “Light Chemo” Taxotere plus Decadron once a week. Started long before radiation. Every Monday I’m off to the “House of Drips”. I tolerate it fairly well. Loss of hair, but I’m not going to let what I see in the mirror interrupt this therapy. The CEA number is now almost back down to where it belongs. So be careful Ric “Vanity, your name could possibly be Death . Let the hair fall where it may."
   
   

10. SURGERY
    — It all started off here for me with the bilateral orchiectomy. I straddled the blade over three years ago. When it comes to PC it very often begins with a knife carving up or cutting off something or other

.
A POETIC TRANSLATION OF THE ABOVE
IN REVERSE ORDER

.
HOWEVER, EVERY SILVER LINING HAS ITS DARK CLOUD!
— The one negative I have to report is news about PC SPES and SPES. It seems that BotanicLab, the company that produces and supplies these supplements is also under siege. Because of an anonymous phone tip, the California Department of Health Services (CDHS) tested and has detected traces of Warfarin, a synthetic blood thinner, in PC SPES. BotanicLab contends that it is not Warfarin but coumarin a natural occurring blood thinner. Also found were traces of Xanax, an anti-anxiety drug in SPES. All shipments of both of these life saving compounds have now been suspended. I have only enough to last me a month more. Gulp!
— It is rumored that a disgruntled ex-employee is the lynch pin sneaky stool pigeon manipulating this attack on BotanicLab. Actually, for quite some time now, a small group of malcontents have been attempting to close the company's doors. It’s been like watching a runaway bus careening down the highway headed straight for us — this mess has been a long time in coming. For months now, my e-mail box has been overflowing with scary warnings that the contaminants are potentially dangerous with deadly side effects. And to discontinue using PC SPES and SPES immediately. Well, what do they think a case of metastatic hormone refractory advanced prostate cancer is? A walk in the park and not potentially dangerous?
Here is where I stand on this subject. I have incurable advanced prostate cancer but as you can see from the numbers on my flow chart the synergy of treatments I am presently undergoing is working well for me. I don’t know what will happen if I am forced to quit what I consider to be a major part of this successful regiment. As far as dangerous side effects? If these bozos actually do have PCa and have looked at the possible side effects of other therapies like chemo, RT., steroids, to name just a few, what’s the big deal. I’m “terminal” guys and now you want to take away something that is obviously helping me. I know that in this country the mixing of natural herbs and manufactured drugs is prohibited and illegal. But damn it, if it works, and in my case it does, I don’t care what’s in PC SPES and SPES! Well, that’s not quite true but close to the truth. If in the end the FDA is forced to shut down the manufacture of this successful alternative therapy a pox on the heads of those who caused this catastrophe. Notice I said a “pox!” — I’m too humane to wish anyone a case incurable advanced prostate cancer!
— To any other PC SPES and SPES users who feel the way I do, Larry Barrett, Susan Bond and Richard Ko are the CDHS contacts. This according to the CDHS website, the hotline number is 800.445.3232. Call them to let them know your concerns.

.
April 14, 2002

Sunday afternoon, April 7th
— I am just back (bad choice of words) from experiencing the worst 30 minutes of my life. Had an MRI. Certainly rich food for dark poetry. Shoved head first (past my toes) all the way into a 20" inch culvert and I'm a bit claustrophobic as it is — forced to lie on my pain and not move for 30 minutes. Ear plugs stuck in my ears so that the deafening sound of the Caterpillar tractor running back and forth wouldn't bother me. That's a laugh! I made it but god knows how. I'd rather walk on hot coals than do that again!!! I'm still shaken from it.

Monday, April 8th Epidural day.
— "No miracle!" — Didn't come dancing out of the hospital. Hip still hurts like hell -side of leg and knee cap also. But I'd say the level of pain has drifted down a notch or two (see above - pain remarks) but I don't seem to need the pain meds quite as often. Dr Mangar (I call him the Pain Guy) said sometimes it's a long slow process and not to loose heart. It hasn't been 24 hours yet — but I had heard the "dancing" stories and I believed! Now, back in reality I must once again lean on my standard mantra: "The highest high I will ever experience is directly proportional to the deepest low I will ever go to. So from here, I'd have to say "There are Good Times a coming!"

Wednesday, April 10th
— Pain may now be down to around 5, but that is with the 12 hour pain killer (oxycontin) at work. Still couldn't make it with out the cane either. Although there are times while sitting (like now at the computer) that I'm totally pain free and that is a definite change for the better. But I'm not standing straight yet with out some real "ouches". I go this afternoon for a bone scan — another ride through a tunnel — another stint on the rack. But at least your head is out in the open in five minutes. Happily — unlike time spent in the MRI tube. Don't let all the stainless steel, white enamel and fresh clean sheets fool you — a hospital is a medieval torture chamber. The new bone scan was ordered to see how active the cancer is these days. The last scan was over a year ago.
— So Thursday Doc Tamler called and said that there was absolutely no sign of PC spread. MRI showed no cancer in my spine at all but a screwed up spine for sure. The bone scan showed no cancer anywhere except the big lesion in groin. Which Tamler believes is actually a bit smaller.

Lesson learned. Much the same as the anxiety I feel while waiting for blood tests results, every ache, sore, pain, itch, blister, bruise will start out, in my mind at least, being PC related. Never mind that I threw the ball too many times for ZeeZee, my dog and pulled a muscle — cancer related! That I eat something that doesn't agree with me and become nauseated. — cancer related! A tooth ache — cancer related! I must always keep in mind that cancer can not possibly have that many relatives!

.
June 7, 2002

— Recently I've been getting messages from some of you wondering why I haven't posted a "Latest Update" since April 14th. Well, there hasn't been much to report. Blood draws produced good numbers on 5/13/02, PSA >0.05, CEA <22.3, PAP >1.3. Since the PSA and PAP numbers have sort of bottomed out and the CEA which was 898.8 (and of real concern on 10/7/00) has fallen to 22.3, its lowest yet. Why post? Let sleeping dogs lie. Funny — when the news is good I don't spread the word as eagerly as I do when I have dire things to report.
— But those of you who do follow my progress closely know that I have had this dark shadow crossing the path ahead and at 4:00 AM on 5/13/02 my PC SPES supply would run out. When the day finally did arrive I went to the lab and had the blood draw mentioned above. Fifteen days later I would have another blood draw and see how my numbers behaved in the two weeks that I was off PC SPES and SPES. As this herbal treatment has been so important in my overall situation, (see February 10, 2000 entry) I was filled with trepidation. Click over to my FLOW CHART of Dates, Blood Markers in relation to Treatment & Medications and you can clearly see what an important part this alternative medicine has played in my battle with PC. Yesterday morning I awoke to a CBS morning radio news program where they were talking about traces of pharmaceutical drugs being found in PC SPES & SPES. Announcing that BotanicLab has gone out of business, but I will come back to this in a minute.
— There is a thing known as the "White Coat Syndrome". A skyrocketing blood pressure response to the sight of a doctor or nurse in medical garb. Fact is, my blood pressure rises dramatically the moment they strap the "squeezer" around my arm. Well, I've discovered another such psychological reaction to a medical situation. I call it "Blood Test Foreboding." It has to do with the paranoia that occurs while a prostate cancer survivor waits for the results of his latest blood test. To avoid this, the lab in my oncologist office is instructed to fax me the results the moment they get them. This time however, after the second test to see how I would fare without PC SPES I waited for the fax to come and it didn't. In my mind the scenario went something like this — The lab showed the test results to Dr. Hausdorff and when he saw how bad they were he decided not to fax them this time, attempting to spare me a "weekend of worry" as I had an appointment with him on Monday while at the "House of Drips" for my weekly Taxotere infusion.
— The moment Vivian, one of the oncology nurses, greeted me and asked me how I was doing I told her of these concerns. She opened my file up, took a look and said, "I don't know why — all your numbers have gone down!" What a relief! What an "Up" moment. I guess, in my case the 3DRT radiation, the every 3 week infusion of Aredia (now replaced with an improved product called Zomeda) and the weekly "light chemo" have been doing the trick. Hooray!
— If there was a negative that came with the "good news" blood test results, it was that if the opposite had been true I had been looking forward to posting a message on the cyber space support group lists I subscribe to. An angry, naming names message, calling to task the self-righteous vindictive gang of nincompoops that brought BotanicLab down. I know most of them through their postings on the prostate cancer lists. One of them, strangely enough, had an on line franchise, and sold me the first supply of PC SPES I purchased. For reasons unknown BotanicLab took away his franchise and the fellow sued the company. As he had been kind, instructive and helpful I even donated a few dollars to his legal fund. Another guy I know has been after BotanicLab since the get go. Nothing anyone could say or do would convince him that there was any merit to these herbal medications. Well, one of them I suspect, ratted BotanicLab out, calling in the Feds and State people to test the herbal supplement. And sure enough, tiny traces of pharmaceuticals were found, and BotanicLab was ordered to clean up it's act or go out of business. They went out of business. I can think of three survivors I know personally, who didn't have my luck, and whose PSA is heading up fast with metastatic pain returning. As I have said, I was going to post a nasty message stating that, without PC SPES, my situation was deteriorating and if I die prematurely I would have to lay the blame directly on their misguided heads! I'm glad now that I don't have to do this, as such behavior is not very becoming.
— I suspect that BotanicLab folded because without those trace pharmaceuticals in the mix, the product simply doesn't work. But it can easily be proven that with many men it did and extended their life. We live in a "double think" culture that allows companies to put deadly poison (alcohol) in a beverage and sell it to anyone over 21. Carconegenic coffen nail are sold in the corner supermarket but a product with studies that prove it helps some men with prostate cancer, especially metastatic, hormone refractory advanced prostate cancer is summarily shut down. I simply can not see any logic in this.
>>>Finally, even though my medical ducks seem to be lined up fairly well for the moment, Billie Barbara, my wife of 50 years Sept. 3rd, has been dealing with temporal arteritis for a year now and seemed to be responding to treatment (steroids) fairly well. That is up until about five weeks ago. Terrible headaches. So last Tuesday she had some scans and tests done and her Rheumatologist is passing her along to a Neurologist. Something seen on her brain suggest that she may be developing MS. Multiple Sclerosis. We will know more next week.
— Sometimes you can't win for loosing.

.
July 18, 2002

— First off — the blood markers taken on 7/8/02 were as good as they have ever been. PSA 0.05, down from a high of 81. on 4/6/99. CEA 9.7, down from a high of 898.8 on 2/7/01 and PAP 1.0, down from a high of 20.07 on 2/25/01. So the latest news on the blood marker front is very good. Recent scan and MRI also looked positive.
— However, up until a week and a half ago I thought I knew what "fatigue" was. I'm hiking up a hill and suddenly have to stop for a minute, too exhausted to continue on. I rest, catch my breath and then am able to climb again. But I have recently discovered "chemo fatigue" and it is a horse of a much different color. I have been doing a weekly Taxotere drip for 14 months with only one short three week break while I had radiation. Up until now this treatment has not been much of a bother and it has certainly been doing the job controlling the PC. I never became queasy or had any of the usual side effects. As Dr. Hausdorff put it Monday "You have been cruzin', Ric." while others he told me about couldn't take Taxotere for more than a month or six weeks." I have been very lucky here.
— The "fatigue" I have been experiencing is like being forced to look through a pair of out of focus sun glasses that color and darken everything. Making each day look more like an obstacle to get through than an opportunity to use and enjoy. In total opposition to my philosophy. Something like a luncheon date becoming more than I can handle and is canceled. I even skipped a Support Group meeting — too tired to go. It is even hard to see through the blur. Depression has never been a part of this crappie illness but it suddenly is now. Also, I discover when "fatigue" beats down the spirit, fear sneaks in through the back door and takes over the living room.
— So my oncologist has me taking a month vacation off from the weekly chemo treatments. He has put me on low dose DES 3/mil while off the Taxotere. First of next month we will reassess my situation and see what I should do. It is good to know that the Taxotere still does work for me and controls the cancer but "Quality of Life" also comes in to play here.
— One other thing I should add. PCa survivors must be careful of "Marker Days" — holidays, birthdays, even Super Bowls. Events that always come with the question "Will I be here a year from now?" A little more than three years ago when I was first diagnosed I was asked if I had any future goals I would like to reach. I thought about it and said: "Yes, I'd like to be around for my 50th anniversary." This coming September 3rd my wife Billie Barbara and I will have been married for fifty years. So, it looks like I'm going to make it no matter what, but in the background there is this damn dangerous thought that my body may be trying to tell me: "I did what you wanted and now I need to rest."
— Of course, it is now time to set a new future goal. And the one I'm working on is four years down the pike. My mother's name was Hildreth. As a baby I couldn't pronounce it and called her "Hoodie." For the first 23 years of my life I was a total Mamma's boy. My father having died when I was very young leaving mother, a very powerful woman, running my life — setting my goals — writing my script and up until I was married she was able to make me live my life the way she wanted me to live it. I spent my early years jumping through Hoodie's hoops. Well, she died of lung cancer when she was 77 and I have decided that I'm damned if I am going to let Hoodie live longer than I do.
— Know that I've given much thought about posting this "Latest Update." Mostly, because of the emotional negativity I have tried to describe as accurately as I could. Then remembering that in the beginning I made the decision to tell my entire PC story — determined to include all ups and downs — the good and the bad. Therefore "chemo fatigue", this sudden damned debilitating malaise certainly is part of my "Prostate Cancer Odyssey" So of course, it belongs in the overall story. And as suspected I already feel much better having written it

.
October 12, 2002

PING PONG
AND ME
WITH CHEMO FATIGUE
Listen!

this time Joaquin's well hit ball
hangs in heavy air — turning slowly
he certainly knows
how to put spin on his service
I watch it coming anything but detached
time standing still

I struggle to re adjust my grip
for a quick smart return
but my fingers feel thick and sticky
on this unfamiliar handle
so give me a moment to right myself
and rally

I have always loved the pop
the ball makes coming off
a sand paper paddle
so know that although
I may be mired in slow motion
unable to ping your pong properly
I predict we are a very
very long way
from stop
+++

.
— Wishful thinking on my part!!! Because, as it turned out I kept on falling from here (July 18th.) into a deep dark dangerous depression. I have noticed that on the different Prostate Cancer lists I subscribe to the subject of Depression and Suicide comes up from time to time. The message is never posted by the person with PC but by a concerned family member. A wife, son or daughter. If interested in a first hand account of someone's brush with this life threatening illness click here on A VACATION IT WASN'T.
— I went to see Dr. Hausdorff, my onco. three times during this awful period of my life. Every three weeks and he could see me slowly coming apart at the seams. He didn't want to add to the panic and anxiety so we haven't looked at what the blood markers are doing since the numbers posted above . In fact it was Doc. Hausdorff who suggested that I go to the Garden Pavilion for help, and it was John who did the needed paper work. I don’t agree, but he likes to say that I almost died of a “non cancer related illness.” However, medication complications (steroids and cold turkey) had something to do with what happened plus the “reaching a goal” thing that I referred to above. So even though the good doctor doesn’t want to take the rap for what I have been through I think it was very cancer related.,
— Anyway the up shot of all this is that except for DES 3 mg/day my PC has gone completely un-addressed for over four months now. So I will be most interested in what has happened to the blood numbers (PSA, CEA, PAP) since that last test on 5/13/02. No ache yet but I can feel soreness around where the big hip lesion is.
— I will know more in a week or so about where I stand now and what I should do about it.

.
October 19, 2002

— During the 14 week siege of fatigue and depression, I didn't do much about the prostate cancer — except for low dose DES, an estrogen: diethylstilbestrol. Charles Huggins received the Nobel prize in 1966 for his earlier discovery that both prostate and breast cancer are hormonally driven and that castration can shut off most of the hormones (androgens) that feed the cancer. DES went out of favor when Lupron and Zoladex became available. They did not have the risk of blood clots that DES (5mg/day) has. A lot of men died from blood clots when DES was the only practical alternative to castration.
— To continue — Now that I’m back from my psychotic loony bin adventures I have been extremely nervous about what my blood numbers (tumor markers) would tell us. I expected them to be rocketing up. Not long ago, during the time I was having 3DRT radiation on the big bone metastasis in my groin, I went off chemo for five weeks and my CEA number jumped up from 474 to 616. Now, keeping in mind the fact that my PSA, at its worst was 81, and the CEA at its worst was a sky high 898, also know that while in the grip of deep depression I even found myself silently rooting the monster on – Suicide by Prostate Cancer! We all know that depression, anxiety and stress is not the best environment for keeping cancer under control. So — gulp! Well, the fax arrived from the lab last Thursday morning — PSA 0.03, CEA 5.6!!!!!!!!!!!!!! The best these numbers have ever been.
— “Good News” is weird. I find that it is most difficult to be creative around “good news.” Happy times make for boring subject matter — about as gripping as Hallmark Card drivel. I like what Black Elk said. “Where the easy way is intersected by the path of difficulty — mark a holy place!” So I will bear down on the “bad news” found in the above paragraphs.
— As a prostate cancer fighting drug, low dose DES (3mg/day) has recently proven to be effective without the dangerous blood clot side effects. So why don’t we hear more about it? Well, it is dirt cheap! That’s why! This is because the manufacturer, Eli Lily, stopped making it. The usual cost of a month's supply of DES is about $50-60. I had to go to a local compounding pharmacy to get my supply. We have a great one here on the Monterey Peninsula — CAP Pharmacy (800) 501-9715). If you need a drug compounded, have your doctor call CAP and tell Dana Gordon that “Ric sent you.” By contrast DES is a bargain compared to Casodex which I was on for a while costing me $400 clams per month. An important detail when Medicare and my AARP supplement don’t cover the cost of oral medications.
— The PSA is usually the only tumor marker that men watch to see if they have a problem with prostate cancer or to keep track of how the disease is responding to treatment. For the first couple of years, after diagnosis, my urologist, and then when I became androgen independent, my oncologist, only kept an eye on my PSA number. About a year and a half ago, and because of Dr. Stephen Strum and PCRI’s Helpline Harry’s insistent prodding, I got my local Doc to do the whole battery of blood tests. At that time my PSA was only a modest 1.53 but it was discovered that the PAP was an elevated 20 and the CEA number was off the chart at 898. However, the online advice from members of a prostate cancer list I subscribe to was “Don’t worry Ric, the CEA number doesn’t mean all that much when it comes to prostate cancer. ” Even my local oncologist, Dr. John Hausdorff said “Your PSA is low — you feel good so let’s just consider the high CEA as some kind of aberration.” When I told Harry and Dr. Strum this they urged me to travel to Oceanside, California and get CEA and Prostascint scans — also a colonoscopy (colon cancer does produce CEA). Which I did, and without even telling Dr. Hausdorff what I was up to. It felt sort of like I was cheating on my wife — but thank goodness I did!
— I’ve since learned that it is not uncommon to see CEA elevations in the context of a high Gleason score (mine was 9) and in the same setting, low PSA levels. This is related to the phenomenon of PSA leak. The PSA leak into the blood decreases with an increasing Gleason score (1 to 10). At the same time that the PSA leak into the blood drops, other tumor markers like CEA, PAP, CGA, NSE are being produced. Therefore, especially in the setting of a high Gleason score or other indicators of an aggressive PC tumor cell population, we should check the other biomarkers of disease activity. I learned all this technical stuff by reading Dr. Strums excellent new book, A PRIMER ON PROSTATE CANCER — The Empowered Patient's Guide, which can be purchased through Life Extension Foundation by calling 1-866-820-7457 or by visiting their website at www.lefprostate.org. The book is also available for $21 from the PCRI www.prostate-cancer.org 310-743-2110. For anyone involved with prostate cancer this is a must read!
— In Oceanside it was discovered that I have non-PSA secreting prostate cancer. Other handles are neuroendocrine prostate cancer, or small-cell prostate cancer (SCPC). I immediately began a weekly “chemo” regiment of Taxotere 25mg/M2 plus Decadron 10mg and the CEA number slowly began to fall. I asked Harry and Dr. Strum what percentage of PCa patients have SCPC. 1 to 2 percent was the guess-ta-ment. I asked if there were studies that might talk about disease progression, survival rate, etc. No studies — No statistics! — as most of the non-PSA secreting PC patients die with a doctor scratching his head watching a low PSA number while the cancer grew, spread and killed. I was very lucky to have gone on-line and stumbled upon the PCRI, Dr. Strum and Helpline Harry. If I hadn’t, I would most certainly be looking up at the dark side of the grass by now. I’m told that until the early 1990's the only place they ever found evidence of small cell prostate cancer was in autopsies.
— This is not to be taken as a criticism of my local oncologist, Dr. John Hausdorff. It is just that the non-CEA, secreting form of PCa doesn’t get much attention. One or two men out of a hundred is hardly worth getting all up in arms about — unless you are one of them!
— As far as Dr. John Hausdorff goes, let me say this — I’m a difficult patient to say the least. A pushy little guy who won’t go to a doctor, dentist, lawyer or auto mechanic unless I am convinced that these professional people know exactly who they are dealing with. I refuse to be an anonymous number just in off the street! So I always make certain that the doctor, dentist, lawyer or auto mechanic gets a copy of my latest book beforehand. I left a volume of I KNOW IT ISN’T FUNNY BUT I LOVE TO MAKE YOU LAUGH at Doctor Hausdorff’s office a week before my first appointment. The cover of this book is a painting of me with my finger up my nose. And you guessed it, when John entered the examination room that first time he did so with I KNOW IT ISN’T FUNNY…. under his arm and his finger up his nose.
— I like to tell this tale when I speak to cancer related groups. At one of these events a woman came up to me afterward saying: “Let me tell you my Doctor Hausdorff story.” It seems she had been diagnosed with breast cancer and was sent to John as I was. When she went for her initial appointment, her sister, who had an eleven month old baby, went with her. While waiting for the doctor to appear they put the baby on the floor. When John walked into the examination room, he surveyed the situation and immediately got down on the floor, playing with the baby the whole time he consulted with the patient. I’d also like to add that John gave me an hour and twenty minutes that first nerve-racking visit and the woman said that she got even more time than that. John is always 30 minutes to an hour late for his appointments. But I never complain because I know he is doing for someone else what he did for me that first time. Doctor John Hausdorff is a warm compassionate human being and I cannot imagine going to anyone else for treatment. He may disagree and argue with the treatment suggestions I run by him but in the end he will do or monitor what ever it is that I want to try. I consider myself a lucky lucky guy!
— More “bad news” from above. Is my reader aware that there is legislation afoot to cut back on Medicare benefits? If it passes many doctors will begin to refuse Medicare patients for economic reasons. So before election day be certain you know exactly where the folks you plan to vote for stand on this important issue. A lot of us would be dead were it not for Medicare!
— On the personal cancer front, for now at least, things are looking up. However, I had an additional blood draw Wednesday to check the CGA, NSE, testosterone & prolactin levels to be certain things are going as well as they seem to be. I do have some soreness in my right and left pubic ramus (we know I have mets there) so I made an appointment with Brad Tamler my radiologist and he did an X-ray yesterday and has scheduled a bone scan for Monday If all of these additional tests and scans turn out to be positive and uninteresting, Dr. Hausdorff and I have decided on a monthly Zomeda infusion plus a Dr. appointment, and PSA, CEA blood tests to monitor my situation. So, until I have some riveting, horrific “bad news” to report……

.
November 1, 2002

— Hot Damn! Some bad news!!! The creative juices are flowing again!!! Returned home from seeing my radiologist about the recent 10/30/02 X-ray and BS (Bone Scan) and the results were not good. I belong to a prostate cancer list — an on-line Support Group HRPC (hormone refractory prostate cancer survivors — like me) and just posted the message below to the list.
— Man! I certainly discovered that there really are times the numbers do lie. A week ago today PSA 0.03, CEA 5.7. I also asked for PAP, NSE, CGA, but John Hausdorff (my oncologist) must not have ordered them. Problem is they have to be sent off to an out-of-town lab — for some reason certain blood tests can't be done here on the Monterey Peninsula. Well, you can bet I'm going to raise hell with Doctor Hausdorff and get them done now. Anyway I have been having soreness in the right pelvis area. So last Friday I got Dr. Brad Tamler (my radiation guy), to do an X-ray and bone scan. Last X-ray was 3/27/02, last bone scan 4/10/02. It has been around 6 months since the last ones.

To quote the report: "When compared to the prior exam, abnormal increased uptake in the right ischiopubic bones has increased in intensity and extent. Minimally increased areas of uptake in the mid-lumbar spine appear unchanged. There is a small focus of moderate uptake in the left calvarium best demonstrated on posterior views. This appears slightly more prominent compared with prior exam. Activity is present in the kidneys and bladder."
— And wouldn’t you know, Hausdorff is out of town 'til next Tuesday. Tamler, wants John to put me back on weekly Taxotere 25mg/M2, plus 10mg Decadron (steroid for side effect of chemo) and add Emcyt to the treatment immediately. I'm not concerned about the Taxotere, as 14 months on it was a piece of cake for me, that is except for the steroids (steroids suspected in recent anxiety/depression episode) but the “good news” is that the Taxotere was still working when I quit 16 weeks ago. At least according to the PSA , CEA and PAP. I talked with "Helpline Harry" (Harry Pinchot) and he told me to ask you fellows on the HRPC list about what to expect and how to handle the side effects of the Emcyt. Harry told me that he had a lot of trouble with nausea when he was on it. Also, know that I have to pay for all oral drugs out of pocket. What is Emcyt going to cost me? I have 'til next Tuesday, 11/5/02, to gather suggestions and ideas for this up coming appointment with Hausdorff.
— When I told Brad Tamler that I was somewhat disappointed — as my recent blood numbers had been so positive. I liked his response "I treat patients not numbers!" I'm glad that I have these two young doctors working together with me and realize that there may be a bit of one-ups-man-ship going on between the two of them. But I like dialogue and have sent a copy of this to Dr. Stephen Strum. As far as I'm concerned, the more input the merrier! And in the end both Tamler and Hausdorff will do what I want. Right now I need ideas from my old PCa geezer survivor buddies!
— It becomes more and more apparent to me that diagnosis and treatment is really up to the patient and lucky is the fellow with prostate cancer who has doctors that work with him. As "Helpline Harry" PCRI’s Harry Pinchot, told me over the phone when I began this journey. "Hear this Ric!" he said sternly, "You are the Captain of this ship!" And since then — I have been! So PC Odyssey readers there it is for now — in a nut shell.

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December 22, 2002

— This will be the last entry of 2002 and the first order of business is to put a handle on the past year. The first year wasn't collected and given a name until almost a year after diagnosis. I hadn’t actually begun the “Prostate Cancer Odyssey” series yet. In the beginning it was just a few random thoughts and poems written and put online to let my friends know what was going on with me. The chemical castration was working then and only when it failed, and I became hormone refractory, did I get serious about this “ongoing series.”. The “Year of the Ostrich” was exactly what "Year One" was. Page two, “Captain of the Ship” was the good advice given me by PCRI's <http://www.prostate-cancer.org> “Helpline Harry” as I began the PCa battle in earnest. "Dancing With Doctors” summed up what was going on in "Year Three." From here, looking back on the “highs” and “lows” of the last twelve months, "Year Four" can only be called a “Roller Coaster Ride.”
— Once again, I realized that the "The height of your highest high is in direct proportion to the depth of your lowest low!" And I didn’t want a life akin to sitting on a stationary bench going ‘round and ‘round on a slow moving carousel. Boring! Like the Big Dipper Ride at an amusement park — the further the distance between the high and the low — the more exciting and interesting the journey. And certainly the “up” sentiments expressed in the January 6th entry juxtaposed to the “downer” of “chemo fatigue” followed by a “life threatening” period of deep depression described in the “A Vacation It Wasn’t” essay, summed up the past 365 days. “Roller Coaster Ride” certainly was what this last year was all about.
— The new year will come into being with the ready made moniker, “ The Fifth Year Out.” For some reason, surviving for five years is the goal of most cancer patients. Well, here I am entering "Year Five" and having had an appointment with my local oncoligist on December 9th, only four weeks after resuming chemo, with all the blood numbers — PSA, CEA, PAP and NSE back in normal range. And more importantly, the pain in my pubis bone is diminishing rapidly. "Good News!" to end the year on. So I think I’ll go back to "The Year of the Ostrich," and dust off and rewrite part of a poem I wrote back when the Casodex hormone blockade had me thinking I had beat this insidious thing.

.
GOOD NEWS REVISITED

familiar with my poetic dependence
on the Four Horsemen of the Apocalypse
my dear sister is convinced
that the advanced case of prostate cancer
I’m dealing with developed spontaneously
as something new and electrifying to write about
and I did rake a chestnut or two
from the fire of these dire circumstances

but what do I do with the “good news?”
delivered by a beaming urologist
“Your PSA has dropped to 0.2,
Practically non existent!
Response to treatment couldn't be better."

I mean, poetic constipation can only result
from smiley-face statements like that
and this, while the poet in me
rummages around
for something dark and riveting
to be profound around

If it hadn't been for the doctor's
casual off the cuff remark
“That over time prostate cancer
learns to grow independently…”
without that nasty zinger
these metered lines would never
have seen the light of day

which gives me pause…
when you are as old as I am
and “the end” being “the end”
why is something like "terminal cancer"
such a terrifying concept
while "died of natural causes"
so uninteresting and comfortably benign?
+++

— And thus we enter the new year waiting to see what aspect of Advanced Metastatic Androgen Independent Prostate Cancer will surface in the “Fifth Year Out.".
— My next appointment with Dr. Hausdorff is on Monday, January 6th. I’ll post again in the week following that. For now I think I will close out the “Roller Coaster Ride” with a new poem written while I sat in the Monterey Bay Oncology and resumed sessions of "light chemo" — Taxotere, 25mg/M2, Decadron (6mg). Three weeks on, one week off

.
THE HOUSE OF DRIPS

There is an address on El Dorado
where I go and climb the stairs
I've learned to get there early
before clients fill the chairs
it's best to be the first
whose name is sweetly paged
before these lovely working girls
have all become engaged

gathered in the parlor
beauties one and all
and I never know which cutie
will lead me down the hall
but it really doesn't matter
all are deft at what they do
so let the act of drawing straws
determine who accesses who

when Vivian steps forward
I know my day is made
you'll notice she's left handed
as she plies her trade
and I'm filled with expectations
as I open shirt and vest
for Vivian's corpus callosum
is larger than the rest

Allison, tall and slender
gets my second look
she says when she's not working
she curls up with a book
she once did something extra
I mean, at my request
so Allison instructed me
to pay at the front desk

and Nora, that Irish beauty
speaks with an Irish brogue
me thinks that Nora thinks
I'm "a wee bit of a rogue"
but I surmise she's drawn to me
like gravy to a spud
for Nora loves to needle me
until she draws my blood

and Lindy, laughing Lindy
let me tell you she's the one
'cause every time she does me
she make it loads of fun
when Lindy runs the session
it gives me such a rush
to have her waltz into the room
and give my port a flush

I call and make appointments
like every other john
it's to the House of Drips I go
each week to get it on
with four oncology nurses
Yes, that’s who this is about
the four angels of mercy
I cannot live without
+++

>>>Stay tuned! I'll see you next year.