.
MEDICAL ISSUES: PC SPES - More Extensive Blood Tests = PSA, PAP, CEA - CAT Scan - Prostascint - CEA Scan - Colonoscopy - "Light Chemo" Taxotere & Decadron - Taxotere spill - DMSO - Port-A-Cath Implanted - 3D Radiation - RT D Side Effects - Supplements - Vioxx Problems (inner eye)... MUSINGS: On Doctors - Second opinions... POEMS: Helpline Harry - Strum - Like Raccoons - Regarding Doctors
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Talk given to Prostate Cancer
Self-Help Group of the Central Coast - 4/4/2001

— Watchful Waiting -- Radical or Partial Prostatectomy -- Seed Implants -- you all have your own personal stories. Mine begins way past the place where most of you are now -- and I would guess many of you secretly worry about your disease reaching the place where mine is. And where is that? I have PCa advanced prostate cancer, metastatic, now androgen independent. (Standard hormone blockade drugs no longer effective) And yet, I'm in pretty good shape considering.
— In February '99, I was diagnosed. Had a Bilateral Orchiectomy, went on Casodex which brought my PSA level down to 0.2 - Where upon, like a fool I stuck my head in the sand and became an ostrich. A year later the unthinkable happened I went "Hormone Refractory" some say "Androgen Independent. PSA doubling up every 2 weeks. My urologist, tells me there is nothing more he can do for me and sends me to Dr. John Hausdorff, a local oncologist. At the same time I finally join a Support Group, which I should have done when I was first diagnosed, and get my ass on-line and go PC surfing -- I make friends with "Helpline Harry", my handle for Harry Pinchot at PCRI, Prostate Cancer Research Institute. He tells me about PC SPES. Dr. John lets me try it and it works -- through June, Then very slowly I watch the PSA come creeping back up. I become aquatinted with Dr. Stephen Strum, PCRI's Medical Director, and he wants me to get a battery of blood work done.
— In every examination room at the Monterey Bay Oncology Center there is a rolling stool that Dr. Hausdorff sits on it during appointments. Whizzing in close when he wants to make an important point, "Ric, you have a disease that there is no one right way to cure. They have their style he says, pointing PCRI's newsletter Insights, and I have mine." At the time I had no retort but I brooded on that till my next appointment. And when John zipped in close I grabbed him so he couldn't scoot away and said, "John, you are a general oncologist, treating all kinds of different cancers, each one with it's own behavior and set of rules. There is no way on earth, you could possibly be on top of all the cancers you treat. The people at PCRI are prostate cancer specialists dealing with nothing but prostate cancer, they have to know more than you about my disease so let's do the damn blood work!" And we did.

November 27, 2000

— All the blood numbers were in . Unfortunately my PSA is still rising in July measuring 6.8 I told Dr. Hausdorff that my buddy "Helpline Harry" at PCRI says that some men who begin failing PC SPES get good results by adding another herbal medication called SPES. I asked Dr. John if we could at least give it a try until my next appointment, January 8th 2001 before considering scary things like Chemo and Radiation. John said OK and I went off to have my monthly infusion of Aridea to strengthen my bones. One of the blood markers in Dr. Strums battery of tests is called the CEA. It's normal range is 2.05 -- mine came in at 840.07 -- Super, super high. I didn't know what it was all about but Doc. Hausdorff didn't seemed all that concerned.
— So I say "See you next year Doc!", go next door and get hooked up for the Aridea infusion. Next thing I know here comes Dr. Hausdorff having just talked long distance with Dr. Strum and because of that high CEA number they want to schedule a CAT scan and another bone scan. This on December 7th. (always a day of infamy) "So we aren't caught with our pants down." says Dr. John. Well, as far as I'm concerned my pants have been around my ankles ever since I was first diagnosed. So I say "OK, but don't bother me with the results until our January 8th appointment. That is, unless something is really amiss and needs immediate attention. My goal being to get through the Holly Daze without worrying about this damned disease. Well that turned out to be a big mistake!!!
— You don't just put "life death" worries like this on the back burner. What to do? Call Helpline Harry, of course for advice, counseling and comforting.

.
HELPLINE HARRY

"Hi, how are you?"
these days I'm never sure
how to field routine grounders like this
am I simply being greeted?
or does the greeter actually want a list
of grisly medical details
my wife says it's easy
she just waits to see if the "How is he?"
is followed by a hushed
"I mean… really?"

for the former a simple
"Fine, and how are you?" will do
for the latter the news isn't great
indications are that the miracle
herbal treatment is beginning to fail
my oncologist offering up
a confusing array
of clinical trials and treatments
that flirt seductively
but speak in a foreign language
I don't fully understand

so Harry,
once again I call on you
a savvy old tanker who has maneuvered
his battle scared machine
through years of malignant mine fields
and metastatic mortar attacks

true
five star Generals know much
about winning wars and such
but the Command Post is usually
so far removed from the front lines
I suspect they haven't a clue as to what
the dog-faces are going through
down here in the trenches

it's the seasoned campaigners
who have my ear
the tough tenacious
lovable old survivors like you
+++

January 8, 2001

An e-mail written to Harry Pinchot the day after
the aforementioned upcoming appointment with John Hausdorff.

— Dear Harry,

— I tried to call PCRI's Helpline but it was continually busy. You and Hal advising and counseling other poor slobs like myself no doubt, so I decided to put what's happening down in an e-mail message to my friend "Helpline Harry", as the act of writing about something has always been my way of getting a line around that which I need to better understand. Sometimes when you speak it, talk it, say it, without making a hard copy the understanding just disappear at the end of the sentence.
— As I suspect you already know it has been a difficult week waiting for yesterday's appointment with Hausdorff. What surprised me most is how much this ol' Guru folded up under the tension and pressure at the thought of starting Chemo and the sky high CEA blood number thing. I found myself canceling two paying gigs I had lined up, one in a local high school and one up in Eureka later on in the month.

1st lesson learned -- No matter how much I think I'm on top of something -- I ain't!
So there we are, wife Billie Barbara, daughter Jerri and I, waiting for Dr. John to appear. He does -- sitting down on his rolling stool with a sunny smile -- my file in hand asking how I'm feeling. I tell him that physically better than I've felt since diagnosis, but emotionally I'm a wreak -- frightened to death of what might happen next.
— He opens up my file saying that at our last appointment and because of the high CEA Dr. Strum suggested I have a CAT, and another bone scan. Results -- As to the Cat Scan there was absolutely nothing to suggest any abnormality, except in the bone of the groin area which we know about. As John put it -- Lungs lovely! Liver pristine! Stomach and intestines right as rain. The bone scan revealed no new mets anywhere. However, there was some uptake in a couple of the original lesions, other than that no change could be detected.
— Dr. Hausdorff implying that since "Helpline Harry" had me add the SPES to the PC SPES my PSA has come down from 6.8 to 2.03 in 5 weeks. So as far as he could see I am in better shape than I was a year ago. I look better, color, etc. I feel better physically -- thanks to the Aredia the groin pain has disappeared completely and my PSA that had started to rise again has dropped back to almost the lowest level it has been in the last year. Aside from an elevated PAP & CEA I am in better shape now than I have been in quite a while.
— "But what about Dr. Strum's warning that a high CEA (mine now at 898.8) could possibly indicate a "secondary malignancy" like colon cancer, or the possibility of "small cell PC" which doesn't show on the PSA measurement but does on CEA" John pointed out that there was nothing on the Cat Scan indicating secondary malignancy and these kind of fears are one of the prices one pays when one learns too much about his malady. Which, I certainly have done -- but for me being an ostrich is way to handle a so called "terminal" disease. The price of knowing to much can drive one nuts ordering test after test after test. The good doctor sensibly suggesting that we remain vigilant but not become obsessive and let it become the central focus of my life -- rather simply regard these blood numbers as an unexplained anomaly for now. If any new pain, soreness, lumps, bleeding should occur, then of course we would get after it immediately. "For now," the doctor said, "be pleased that what you have been doing in your battle with PC has done as well as it has."
— And Harry, when I consider that, I realized that much of the thanks must go to you!!!! It was you who told me to get off Casodex on that first phone call, also suggesting I join a support group. You who introduced me to PC SPES. Then Aredia, getting the codes for Medicare that they didn't know about around here yet. Most recently informing and advising me to add SPES to the PC SPES regiment. The vegan diet and suggested supplements came from local support group members -- the Vioxx from Dr. Hausdorff but everything else I'm doing is a direct result of my contact and friendship with you. So I suspect you will be displeased or at least concerned that I am going to try to put the CEA number on the back burner for a spell. And don't think I'm not well aware that by so doing I may get the wish of all PC survivors -- to die with PCa not from it.

2nd lesson learned -- I thought I really knew what you meant about being "the Captain of the Ship". I've talked about it, written poems about it but up until I find myself going against what you, my best navigator, and Dr. Strum would advise -- I had no idea what the concept of being "Captain" really meant.

The 3rd lesson learned - is that during this period I watched my wife Billie Barbara being pushed off to the side of things as my fear rose and the attention of friends and family centered totally on me and this CEA number fixation. Not even considering how frightening all of the hubbub must be for her.

— Thanks again for being there Harry,

.
January 10, 2001

— The very next evening, 1/10/00, just before dinner, Harry and Dr. Strum phone me from the PCRI offices -- talking to me for a half an hour convincing me to make the trip south for four days of tests next month including a ProstaScint in Oceanside. I guess now I'm finally facing the dilemma of those who want to have some say in their own treatment. My plan is to write Dr. Hausdorff, whom I truly like and admire, a note the day I leave for Oceanside. As I feel a bit guilty sneaking off to Southern California with out Dr. John's endorsement. After all it was I who talked him in to running all the blood tests that Dr. Strum wanted in the first place. And now I'm paying the price. My best friend says: "So you go to Oceanside and something turns up that must be addressed -- what is Hausdorff going to do? -- turn you out into the street? If nothing shows up in this new bunch of tests -- just be prepared to eat all the crow Dr. John wants to serve up. If you scan clean an it was a fools errand wouldn't crow be a very tasty dish?"
— The role of patient these days is a tough one! As is the role of physician! In olden times before cyberspace and the internet. That little black doctor bag was full of accouterments of cure and magical medical implements. When you got sick, you went to the doctor and said "fix me". And usually we were fixed. But now, here in the cyber smart new age the physician / patient relationship is all out of whack, the patient can now go online boning up on his particular disease and become as knowledgeable as the doctor, who, if he spent his days surfing the world-wide-web there would be no time left to practice medicine. We net-nuts must be driving the poor doctors up the wall -- at every appointment bringing in a foot high stack of abstracts and papers we have printed out for the poor doctor to study. And if an MD uses e-mail he opens his personal life up to hypochondriacs worrying about every pimple. Tough all around. That little black bag post cyberspace? I peeked in the other day and all I found was a jar full of leeches and brace and bit to drill holes in your head to let the demons out.
— As for all the special attention Harry Pinchot and Dr. Strum have been giving me. I suppose it is because Harry and I, over time have become close friends. Harry and his wife Dee spending a night with us at our home in Big Sur last summer. Harry introducing me to Dr. Strum, with whom I have exchanged poems as well as patient 2 physician messages. He is a fine poet himself and I believe an important medical philosopher. (I was told by a local PC survivor that Strum was too full of himself. The kind of person that should never be allowed near an open mike. Well, if you truly believe in what you are doing, which is something that deviates from mainstream thinking, you have to be that kind of person. How far would Jesus have gone if St. Paul hadn't come along and sold the product?) I was with both Harry and Strum in the Los Angles area a couple of months ago reading the set of poems I've written around my battle with PC -- to four Southern California Prostate Cancer Support Groups. Before I spoke I had the privilege of watching two dedicated men of advise and empower men in the groups they work with.
— Harry's line about the unexplained high CEA number that really tipped the scales toward Oceanside was -- "If you have a fire alarm in your house -- do you ignore it when it sounds or do you investigate the cause? Ric the CEA is your fire alarm!"
— So I'm off to the Tri City Medical Center in Oceanside, California. I'll be there undergoing a CEA scan, ProstaScint scan and a colonoscopy. The results will be in for my next scheduled appointment with Hausdorff on March 5th. And what does a poet do while he waits to make such a journey. He writes. About this love triangle -- me and my two doctors. Moonstruck teenagers write poems about such affairs and so do silly old men.

February 17, 2001

— I'm back!!! And after the colonoscopy experience I have already left a message for "Helpline Harry" and Doctor Strum thanking them for those "six swell days in Oceanside!". The colonoscopy? - 48 hours of nothing but clear broth and Jello leading up to consuming a whole gallon of kerosene with a slight lime (it was better than the cherry ) flavor -- and this in three hours, followed by being enthroned on porcelain staring at the backside of a Motel 6 bathroom door for four hours. The actual procedure was a breeze as they IVed me with a potent that put me in la-la-land where I was conscious of everything that was happening (the entire guided Hollywood tour through five feet of my own colon) -- Outcome? -- Clean as a whistle, with nary a polyp to pluck -- and I have the photographs to prove it! To view Ric's colon click HERE
— However, the outcome of both the Prostascint (click HERE and CEA scans indicate that the CEA is being emitted from a single site in the groin area. As you know I really took this side road to find out why I have such a high CEA number and to see if the cancer was spreading to the soft tissue. Well, the Nuclear Medicine Department Head at the Tri-City Medical Center in Oceanside — Dr. Samuel Kipper (his e-mail handle is SamSalmon -- I get it Doc!) did find that around the bone mets in the groin the cancer has spread out into the soft tissue. If I understood Dr. Kipper correctly, it is more than likely Small Cell PC, a quite aggressive form of prostate cancer that doesn’t generate PSA but does produce CEA. However, at this point Dr. Kipper says it appears to be localized and suggests that we radiate these areas to stop growth. When I tried to wiggle out of the radiation idea because I’ve been told by more than a few PC survivors to avoid RT for as long as possible, Dr. Kipper was quite insistent that I "spot weld" these active areas, and soon. Sort of sounds like, once again, it’s Dr. Tamler time. If you recall, I did have a thorough exam with this Radiation Specialist last June 6th and even planned to start radiation but decided to try Aredia first when I found out that Medicare did cover it.
— Hopefully Doctors Kipper, Strum and Hausdorff will confer by phone and at my next appointment, March 5th with Hausdorff a decision on how to deal with this new development will have been decided upon

.April 4, 2001

— And what has been happening in the last month since my March 5th posting? Three major new things — Chemotherapy, a Port-A-Cath implant in my chest and Radiation preparation.

1st event: — The chemo last Monday was my 5th weekly session. The first two went with out incident. Before they drip the chemo they give me 10mg Decadron (a steroid) to minimize the possible negative reactions to the Taxotere. And man, does the steroid jack me up. For the last two years, since the orchiectomy, the last thing I remember each night is Dan Rather beginning the 6 O'clock News. But the Decadron has me shaking my wife awake at midnight shouting, "Let's go dancing!!!" First two sessions took an hour to infuse the Taxotere. On the third session they speeded the process up to 30 minutes. And I had a Taxotere extravasation -- chemo spill. The vein broke and the Taxotere went out into the tissue around the needle. All of a sudden I felt something akin to a bee sting. Looked down at the back of my hand there was a "bleb" small bulge at the needle site. I rang for the nurse -- but she was busy with another patient so another three minutes passed before she got to me and turned the drip off and moved the IV to the other hand and we finished the session. But I had about 6 minutes of Taxotere spilling out into the tissue on the back of my left hand.
— No one seemed concerned about the incident -- or told me to watch for trouble or that I might have a problem etc. In a day or so I noticed an inch square blotch where the needle had been. Spreading out a half inch or so each day. Looked sort of like poison oak or a dark sunburn. But no pain and I thought this is the way a chemo spill behaves before it goes away. Eight days and the red blotch was covering half the back of my left hand, now with a slight numbness to the touch. On the tenth day I called PCRI on another matter and happened to mention to "Helpline Harry" that my hand was really bothering me.
— Harry was most concerned that I wasn't doing any thing about it. Hausdorff has been away for 12 days. So Harry instructed me to get some DMSO. So I went to Central Compounding Pharmacy. Dana Gordon had none for sale but had some he used as solvent. So he mixed me up 70% . In the drug store parking lot I applied it and then started for home, soon began to taste a funny garlic like taste on the inside of my lips. Harry told me this would happen. Things felt hotter, tingled and stung more than before. This morning when I took a bath I couldn't put my hand in hot water with out it really hurting. This afternoon I put my hand in ice water and then put a cold compress on it and it does relieve the symptoms some.
— I went into the nurses station with the DMSO, showed the nurse what my hand looked like and told her how I was going to treat it. She sort of jumped back when I mentioned DMSO saying she had heard it was touchy stuff. But went on to say that they (all the nurses) would be most interested to see how it worked with me. So I am now armed with all the material Dr. Strum and Harry sent me on DMSO and plan to give it to them on Monday when I go back for next Taxotere. Click to see wound

2nd event — Because of the spill problem I had a Port-A-Cath implanted in my chest. Dr. Kajikuri did the surgery. Met me last Thursday. Did the implant in Short Stay at CHOMP on Friday. Had me call him on Saturday, answered the phone himself and wanted me come to his office so that he could check things out as soon as I could get there. A doctor with no other patients coming to his office on a Saturday morning. What will they think of next. Every thing was perfect ready for my next session of chemo.

— Last Monday I go in for that session loaded for bear. John walking in on me while I'm holding forth, teaching the oncology nurses what DMSO was all about. Parading my wound around like a 2nd place Olympic metal. John was really shocked at the way the hand looked and asked the nurses if they had ever seen a wound like the one I was sporting. No. Vivien, who has been there the longest said that she had heard about DMSO. Looked at the material Harry sent -- saw the date on one of the papers, 1991. Said that she never used it because she heard shortly after that -- that it was not being used anymore as it wasn't FDA approved. I found out from Dr. Strum that there was a controversy because DMSO is a solvent, not a medicine. But it was soon resolved and being used all over Southern California. The oncology RN's were most impressed with all the material PCRI sent me and are looking in to the idea of keeping DMSO on the premises. Dr. Strum has me getting the wound photographed every two days and is going to do a piece in PCRI's Insights 4 color newsletter about how to handle chemotherapy spills. I have had poems published -- now my hand is going to be published.

3rd event. — It has been a busy month. I also had my appointment with Doc. Tamler to discuss radiation. During the session Dr. Strum called and I listened to the Tamler side of a 40 minute discussion. Have you ever listened to two doctors talk? Man, it is weird! They speak in code. The up shot was that I do need to be radiated. If I'm a candidate, Strum wants me to go to Fermilab in Batavia, IL for Neutron Beam RT. Dr. Tamler thinks that 3DRT here at CHOMP would do the job just as well. But of all the doctors I am going to, or have ever gone to, I think Brad has the best take on me. He said, "Frankly, I think either option would come to about the same end. But if you can afford it financially and emotionally. Then by all means go to the Fermilab. You will get better material for poems in Batavia!" Now there is a wise man, an MD who knows that each doctor has a style of their own, but also knows that each and every patient has a "style" to be considered as well when treatments are being proposed. A doctor who treats the patient as well as the disease.

.
May 3, 2001

— This is going to be about one of those side roads that Prostate Cancer survivors run in and out of every now and again. You know -- because of this that happens and when that happens you do this which causes that.
— Like boys in a school yard, PC survivors trade supplement ideas like baseball cards. As well as doctor prescribed medications each of us has our own pet arsenal of anti-cancer capsules, pills and drops. Here is a complete list of the Mickey Mantle, Babe Ruth and Willie Maze that I consume each day.

— Because I've been using a high dose of PC SPES for over a year now. And it has worked well for me keeping my PSA number down but one of the major side effects is the possibility of blood clots. So one needs to keep the blood fairly thin. Therefore, in the list above the Vitamin E, Aspirin and Ginkgo Biloba, all over the counter supplements were included.
— Back when I first went to Doc. Hausdorff he prescribed the comparatively new pain killer -- Vioxx. And it did the job on the groin pain I was experiencing from the cancer lesions in that area of my pelvis. I then began an Aredia drip every three weeks which happily took the pain completely away. But I had heard or saw something somewhere about Vioxx also being a COX 2 inhibitor (Cancer cells often produce large amounts of COX-2 and use it as a biological fuel to cause rapid proliferation of cell division.) so I continued to take the Vioxx 25mg/day. This since 6/30/2000.
— Now back to the trauma of last weekend. I began to see tiny particles of something in my right eye. Felt like I was peering through a really dirty window. Or if you reversed the picture - light to dark - it was Vincent's "starry starry night." Or perhaps the Star Trek galaxy that the Enterprise continually files through. Then from nowhere this jet black polliwog / sperm looking thing with a long grainy tail would swim into the picture and disintegrate into millions of tiny specks in a couple of minutes.
— In my twenties and thirties I had a continual twenty year bout with iritus. I can see out of my left eye but not well enough to read. So last Friday when all of this started happening in my right eye I panicked. I didn't see myself tapping down the street with a white cain but to loose the sight in my right eye would be to essentially loose the life I'm enjoying now. No more computer / Internet! No more "poetry readings"! No more "one-liner" artwork!
— I started calling all my dancing partner doctors but it was the week end. They didn't answer or weren't there. Dr.Hausdorff had another Doc "On call". I talked to him but all he could tell me was to wait until Monday when I would be seeing John anyway during chemo therapy. This all happening on the busiest weekend for me in years -- Did a wedding ceremony in Big Sur -- The Big Sur Marathon used a painting and a One-Liner of mine on the official Tee-shirt so I had to sit in a booth at the Expo in Monterey signing Tee-shirts and posters -- I had a Unitarian Sunday service to do a "reading" at -- Also an evening event for the Carmel Cultural Center. All this looking out of Vincent Van Gogh's eyes.
— And who do you suppose comes through again "Helpline Harry". I get him on the line and we go over everything I am presently doing and he tells me to get off the Vioxx and all the blood thinners until I see Dr. Hausdorff. Then on Monday when I tell Dr. John about all of the above he won't even do the Taxotere drip until I see an eye specialist on Tuesday.
— Monday night Harry calls back and it seems that he has been calling some doctor's he knows around the country. And while describing my case to a PCa specialist back East finds out that there has been a recent paper out on the long term use of Vioxx causing degeneration of the blood vessels in the inner eye. Bingo! That plus all the blood thinners is probably causing this mess.
— Tuesday, the eye guy, Dr. Forbush squeezes me in early in the morning and takes a long look. No sign of a detached retina! (a secret fear) And in fact could see the blood but couldn't find where it is coming from. Evidently since going off the Vioxx and blood thinners the active bleeding has already almost stopped on it's own. Dr. Forbush assures me that in time the "starry starry night" will disappear.
— Battling prostate cancer can be a bit like needing to inflate a flat tire. In order to get to the air pump, you have to empty the tool shed where the pump is buried under a pile of boxes and other junk but before you can open the door to the tool shed you have to cut the tall grass that won't let the door open but before you can do that you have to sharpen the dull mower which has you wandering around looking for a file. And what the hell has a file got to do with a flat tire!

.June 7, 2001

— The day before we left for Ohio and Shawnee State University -- I spent a couple of hours at the CHOMP Cancer Center while a team of radiation technicians figured out how to best zap the tumor in my groin. The Neutron Beam Radiation I would have opted for fell through because the Fermilab at Batavia, IL is government owned and won't take Medicare — it figures! However, now that I have seen the local 3D Conforming Radiation set up at CHOMP I'm more than impressed.
— I was tattooed in three places so that laser beams will see that I'm in exactly the same position each time they fire off their fancy, new (one year) ray gun. The beams conforming to my tumor exactly. I requested rosebud or butterfly tattoos but Julie, the technician just stabbed me three times with a fountain pen so I wont be dropping my pants to reveal my tattoo artist's handy work . Though there is much dropping of one's pants involved with where I'm being radiated. When we got back from Ohio Dr. Tamler called me back in for some fine tuning and then at 8:45 AM, May 24th, I began a five and a half week daily visit to the big gun. Week days — Weekends off.
— And that first session was a lulu -- three hours. Should have taken ten minutes. In order to miss the bowel and bladder they take three shots at me from different angles. I'm laid out on a table that grinds upward (like in Frankenstein) and then slid under this Star Gate looking contraption but after volley #1 which took six seconds or so an avalanche of technical people poured into the room. Followed by much arm waving and running back and forth clicking switches and kicking the machine. They finally asked me to get off the table and go back to the waiting room -- something had broken. "It wasn't me!" Pretty soon these two grease monkey looking guys in dirty coveralls show up. Only kidding, but I must admit, visions of a mechanic underneath the machine, only his feet showing, asking the other grease ball to pass him wrenches and oily car parts did dance in my head. In reality it was all so high tech I couldn't tell the white coated mechanics from the doctors and technicians. Tamler wanders by during all of this mumbling, "I knew it Ric, you just had to wreck a two million dollar machine to get some raw material for your next poem!" The man knows me pretty well.
— After two and a half hours I'm back on the table — in the "pants down" position — this time it goes smooth as silk. Zap #1 had come from above -- Zap #2 from directly below and Zap #3 from an oblique angle (about 10 O'clock). For this one a female technician appeared at my elbow, "We're going to tape your penis out of the way — so it won't get burned." Sounds like I'm hung like a horse. Believe me I'm not! Just a tiny little button mushroom we don't want to over cook. Today was day number ten. The way I figure it, this will all come to an end the third of July.
— The day I began radiation -- when I met with Brad Tamler I was feeling pretty high because my most recent blood numbers (5/14/01) looked pretty good -- PSA 0.82, PAP 2.60, CEA 474.6. First time I've seen a 0 kicking off the PSA in almost two years. The PAP is way down from it's high of 20.07. The CEA, although still high, is drifting down, to more than half of what it was at it's highest - 898.8. Doctor Tamler said that numbers going down are better than numbers going up but the fact is that between the CT Scan done 12/07/00 and the one done a couple of weeks ago for the 3DRT set up shows a lot of up take and growth in the groin tumor. Obviously, my cancer is androgen independent and not making PSA. Lucky for me I didn't just sit back complacently looking only at the PSA number. Trying to figure out why I had that high CEA number, no doubt, saved my life. Speaks volumes for having more than just your PSA measured Thank you Dr. Strum!
— At my last appointment and heated exchange with Doc. Hausdorff he said "good-bye" and had disappeared down the hall. Suddenly he was back standing in the doorway grinning and pointing a finger at me. "You really get off on all of this don't you Ric?" Of course I do I'm not going to spend the rest of my life running scared!

.
LIKE RACCOONS

we also wear a mask
but instinctively recognize our own kind
prostate cancer survivors
come to forage
a "Treatment and Cure" lecture
the specialist winding up his remarks
with some thoughts on "Quality of Life"
the "Newly Diagnosed" leaning forward
taking copious notes
until the aforementioned
change of subject emptied the hall
swept it clean

"They just don’t get it!"
the specialist wept
"They don’t want to know
the road to Easter
goes through Good Friday."

after dark raccoons materialize
at the Laguna Seca Speedway
searching for roadside snacks

crisscrossing highway and track
trapped suddenly in headlight glare
they freeze — petrified
ultrasound and biopsy results leaving
them scared stiff — eyes wide — jaw slack

but think about it boys
we’re 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"
+++

July 27, 2001

— Really not too much to report this time. It has been three weeks and two days since my last radiation treatment on the bone met in my pelvis. I'm told that the RT tumor killing action goes on for about 6 weeks after treatments and unfortunately so do the side effects -- stinging at the tip of the ratchet when I urinate (though this is somewhat better now) and the awful burning sensation at the end of the tunnel everytime the trains come through. Of late this has been a major "Pain in the ---!" Jeez, when I was a kid I promised myself I would never fall into the old geezer trap of constantly talking about my bathroom activities. But then what does a kid know about the possible side effects of chemotherapy and radiation?
— Two weeks ago I resumed the Taxotere and Decadron "light chemo" weekly regime after an eight week vacation during radiation. Every Monday, the treatment with just a bit of queasiness on Tuesday. This because of my last blood numbers (6/28/01) came in PSA 0.49, PAP 2.5, both down but that pesky CEA turned around and started rising again during the chemo vacation -- back up to 616.0 from a low of 474.6. I guess my own personal strategy is to throw everything at the damn disease but the kitchen sink. Hell, let's throw in the kitchen sink also.
— Back, after the orchiectomy, when the catheter was still a painful problem -- when the chemo nausea and radiation burns are at their worst I have been working on a poem below entitled

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REGARDING DOCTORS
On Good Days & Bad Days.

In turn I've met them all
Doctors Slash, Poison & Burn

on good days
my urologist is Arthur of Camelot
wielding Excalibur in my defense
Zorro, foiling enemy lesions
a deft dashing master of surgery
on bad days —Jack the Ripper!
stropping an edge on his flashing blade
Sweeny Todd intent on doing butchery
Genghis Khan hacking and chopping
his way through me

on good days
my oncologist is Merlin wise and kind
dispenser of healing elixirs
the Lone Ranger coming to the rescue
leaving silver bullets behind

on bad days — Dr. Jeckel!
with unexpected side effects to Hyde
like the cackling witch in Snow White
he stirs his bubbling cauldron
feeding me apples with venom inside

on good days
my radiologist is Keeper of the Fire
Shaman — squire of healing beams
firing off therapeutic volleys
the Buck Rogers of my dreams
on bad days —Dr. Strangelove!
fondling his arsenal of bombs
Nero fiddling fanning the flames
and if General Sherman is on the march
then Georgia is my name

in closing
I suppose it's obvious
and goes with out
my having to say
>that these contrary lines
were composed
on a very very bad day
+++
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— I'll be getting new blood numbers this coming Monday (7/30/01). And seeing Dr. Hausdorff the following Monday (8/6/01) about what he thinks of Dr. Strums recent suggestions if the CEA number doesn't turn around and start down again

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August 11, 2001

— This “Latest Update” is in danger of being boring. Good news can be that way. Over the years I’ve observed that a spectators full attention remains riveted only as long as someone dances at the edge of a grave. Shakespeare's As You Like It is not much more than light & airy theater fare. An amusing Midsummer Night’s Dream distraction. Dark heavy dramas like Hamlet, Othello and King Lear are the real attention grabbers. If there was absolutely no chance of seeing a fatal accident, how many would bother to watch the Indianapolis 500?
— The 7/30/01 blood numbers came in yesterday — PSA down to 0.19. CEA back down to 536.1, PAP down to 1.2. During my two and a half year odyssey with PCa my PSA has been as high as 81 on 3/19/99. The CEA, had risen to 898.8 on 12/7/00, the PAP climbing to 20.07 on 2/26/01. So these latest blood indicators are all very positive. It seems the “Throw everything at it. including the kitchen sink” approach is working.
— The only problem with the “kitchen sink” strategy is we aren’t exactly sure what is doing what. In the background I’m still taking 13 PC SPES + 4 SPES daily. This is probably the reason for the low PSA. I’ve just completed 28 days of Radiation on the large lesion in my pelvis. (the falling PAP number would seem to indicate that the RT went well) After radiation I resumed the weekly “light” chemo (Taxotere + Decadron) after taking an 8 week vacation. And during the chemo break the pesky CEA began climbing again. But in eleven days, after only two infusions of Taxotere the CEA fell 80 points. And of course, there are other things I’m doing like an infusion of Aredia every three weeks for the bone strength. Strict diet — aside from ocean caught fish I’m a diehard vegan. Recently began taking Dostinex to lower my Prolactin level. And supplements galore! The sum of which has given me the best blood numbers I’ve had since being diagnosed with PCa.
— Am I happy about all of this? Of course not. — Recently rumor and innuendo has it that the manufacturer of PC SPES is having trouble getting the key herbal ingredient out of Mainland China. A group of men on the PC SPES Internet list report that their PSA has suddenly begun rising and that there must be something wrong with the new batches of this product. Some speculate that the company has been adding manufactured DES (estrogen) to the product. If this proves to be true the FDA would shut BotanicLab down in a heart beat. You can sense the fear and hysteria in the men (See LIKE RACCOONS above) who have depended on and benefited from this herbal alternative medication. I have checked supplies and discover I will run out of my obviously effective PC SPES & SPES on September 3rd. (Incidentally, Billie Barbara’s and my 49th wedding anniversary)
— So here I am with improving blood numbers, free of pain, feeling great and strained US China relations, International politics, rumored embargoes, and economic subterfuge keeping me awake staring up into the darkness worrying about what would happen to this feeling of well being if suddenly PC SPES is taken out of the mix?
— All of which has me off to the races again!

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August 25, 2001

— PSA down to 0.11, CEA down 120.7 clicks to 415.4, PAP down to 1.1. I have a new supply of PC SPES so that crisis is over for the time being. Yawn! Ho Hum!
— And what have I been doing to deserve this spell of calm quiet water?

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November 3, 2001

The latest blood numbers just came in and the direction is still down. PSA <0.05, CEA <232.5 So the “throw everything at it, including the kitchen sink” approach is still viable — PC SPES - 13/day, “light chemo” - Taxotere 25mg/M2 once a week, Aridea 90mg – every 3 weeks, five and a half weeks of 3DRT Radiation 50.4 gy now completed, Dostinex 0.5mg 2/wk, Calcium 1250mg each day plus Rocaltrol 0.5 1/day.
— My local navigator Dr. Hausdorff has a bit of a problem with doing all of the above at the same time. “How can we be sure what is most effective?” My Southern California navigators, Dr. Strum and “Helpline Harry” advise that “As long as the job is being accomplished keep it up.” So I’ll continue with the present regiment as long as things stay under control. Personally, I would like to discontinue the chemotherapy. This would be fine with Doc Hausdorff but Strum and Harry point out that my CEA number (a measurement of cancer growth like PSA) started back up when I took a 6 week hiatus from chemo during radiation. Mostly the side effects have been quite manageable. A little nausea, fatigue, and the bruising on the back of my hands and arms. But lately VANITY has begun to raise its ugly head!
— I’ve heard tell about women who refuse chemo because they can’t bear the thought of losing their hair. The loss of locks has never been a big deal for me. I started losing mine in my mid-twenties. I once wrote a poem about this and the kind of men who grow a sideburn to the floor in order to have plenty of ground cover for the comb over. Other guys opting for a transplant which always looks to me like a marching band standing at attention in the center of a football field. Toupees don’t fool anyone and bring to my mind the pelt of my mother’s dead Pekinese - Chang. The punch line of the piece chiding my hairy friends bragging that I never was one to waste my male hormones growing hair! Always a big laugh there! Not so funny now after the orchiectomy. “What hormones?” These days we certainly don’t want hormones coming around to feed the animals.
— As I understand it, hair loss during chemotherapy is a result of the chemical searching out and destroying fast growing cells, i.e. cancer cells. But other normally fast growing cells like hair and fingernails are also effected. These days I’m even shaving the fringe off! Lucky for me Michael Jordan came along even before I was diagnosed making bald fashionable, even for short white guys. So if the chemo is denuding my pate I’m not aware of it and don’t really care.
— But looking in the mirror the other day I begin to have empathy for the women mentioned above. My beard has recently begun to look thin and wispy like the one that hangs from the chin of Confucius. I started growing mine as a nineteen year old art student in Paris. One needs to look like a painter while learning to become one and my whiskers were thin back there in the beginning also. A friend once informing me that my pitiful beard looked more like an armpit. Over time it did become dense and thick.
— I only shaved it off once in all the fifty three years I have been sporting it. I was 28 at the time and in dire financial straits. My mother, who always hated my beard (the real reason I grew it in the first place) offered to lend me a financial hand if I shaved it off. I hang my head in shame when have to admit that I did it — once again mother exercises her diabolical powers over me. Of course, I began to grow it back the next day. “Forever” wasn’t part of the deal. I painfully remember that during that disgraceful day my six year old daughter came home from school, looked up, and said: “Daddy, you look like a cobra! No chin!”
— I don’t like it but at this point I’m not ready to die for my beard so I will continue the “light chemo” and hopefully keep driving the CEA number down. A vain old cobra with a thinning hedge of facial hair on a non existent chin that once again begins to look like an armpit!
— I just hung the phone up after discussing the medical aspects of this "Update" with "Helpline Harry". I always like to be sure I have the MD stuff straight. It seems that the beards vanishing act is also and perhaps more so do to the lack of testosterone in my system". "You mean....?" I said. "Yep!" says Harry, "It won't be long until your chin will be as hairless as a babies bottom." "Waaaaaaa!" says I.