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Medical Issues...
Musings... on pain
Poems..., the Pain Specialist

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January 1, 2003

>>>I've decided to enter the new year with a "Present Situation" "Latest Entry."
>>>With less than a week to go in 2002 I find myself crossing over with the news from the cancer front looking good. PSA 0.05, CEA 5.7 & NSE 3.9. "Light Chemo” seems to be still effective. And best of all the soreness in my pubis has almost disappeared completely.
>>>The electric shooting sciatic pain in my right thigh and knee is quite another story. I'm now walking with a cane, bent over and looking like a tall troll. In January I will ask around and make an appointment with a good "back" doctor to see if there is anything that can be done. I've seen the X-ray of my lower spine and it looks like a horrific wreak on the LA freeway. Lumbars every which way! But Howard Hansen, one of my HRPC (hormone refractory prostate cancer) e-mail buddies points out that unlike advanced prostate cancer, sciatic problems can be fixed and not to ruin my quality of life trying to avoid surgery, etc.
>>>I've tried all manner of pain pills and patches. They work up to a point but I’m a bit nervous about these powerful medications, as there is good reason to believe it was the high dose Oxycontin plus the steroids that took me on that deep depression roller coaster ride that wound up in the Garden Pavilion. I've also been to an acupuncturist, tried physical therapy, supplements, magnets and so far, all to no avail.
>>>I was once told a story about a woman, hospitalized, dying of cancer, and in unrelenting excruciating pain. Drugs, therapy, nothing seemed to help. A "Pain Specialist” was called in to see if he could relieve the woman’s suffering. When he entered the room and told her why he was there she groaned and scoffed, "You mean that you think you can do something about my pain when an entire hospital staff has been unable to come up with anything that helps?" He responded: "You mean that you think you would still be aware of your pain if I were a Bengal tiger prowling in from the hall sizing you up for dinner?" After that, he worked with the woman for an hour or so. As he got up to go the woman reached out and grabbed his hand, "Leave the tiger!" she whispered. "Tiger Therapy" is high up on the list of things I plan to try.
>>>At my last appointment with my oncologist, John and I got into a funny patient / physician jousting match. Once again I told him that I believe I have Small Cell PC. Once again he disagreed. We debated a bit. The only way to be absolutely certain would be to take additional biopsies. Something neither one of us really wanted to do. As John left the examination room he stopped in the door way. "You really think your disease has mutated into Small Cell?" "I do!" says I, "Because of the low PSA and high CEA weirdness." "OK, then," says a grinning Dr. Hausdorff, "Small Cell Cancer it is! I mean what do I know?" At that we both cracked up with laughter. I think it is imperative for survival to be able to find the humor in and make fun of such deadly serious things.
>>>I'll leave you now looking ahead to another 365 days of "who knows what?"

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....................................THE NAVIGATORS

...................................search engines now enable patients
...................................to sail the waters of the world wide web
...................................charting everything there is to know
...................................about any given medical predicament

...................................perhaps this is the reason doctors
...................................no longer carry that little black bag
...................................the one
...................................my imagination filled
...................................with magic elixirs
...................................and gleaming implements of cure
...................................when all it really contained
...................................was a jar full of leaches
...................................and an auger
...................................for drilling holes in my skull
...................................to let the demons out

...................................elevate yourself
...................................in the Chain of Command!
...................................above physician and homeopath
...................................especially
...................................when attempting to circumvent
...................................a disease
...................................that “there is no right way to treat”
...................................take over the helm!
...................................don’t cower below deck
...................................stuck in steerage
...................................powerless and beaten

...................................in the mid eighteen hundreds
...................................clipper ship captains
...................................gathered in waterfront taverns
...................................to quarrel and vie about
...................................the safest route
...................................around Cape Horn and where
...................................in the Straits of Magellan
...................................to hide and ride out a storm

...................................just so —
...................................in prostate cancer circles
...................................navigation still rules
...................................as always
...................................the topic of conversation
...................................the latest treatment
...................................the promising trial
...................................holding tight to the rigging
...................................we scan the horizon
...................................hoping to see where some
...................................medical genius has begun
...................................digging the Panama Canal
...................................+++

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February 15, 2003
.
>>>Shooting pains in right hip and down the inside of right leg really have had me on the ropes lately.
>>>I suppose it is only natural that every pain, migraine and tooth ache starts out in my mind as "cancer related." But a recent MRI of the problem area showed no new sign of cancer but does show a messed up spine. The recent blood numbers are fine (PSA 0.05, CEA 5.7, PAP 0.3) so this time I am just another senior dude struggling with an old body and accumulated birthdays.
>>>I went to a Dr. Halamandaris, a "brain and spine" guy, who, when he heard I wasn't in any hurry to rush into back surgery set me up to do three months of physical therapy. It seems that everyone I know who has had surgery says it didn't help much and about half of them said they came away from the operation worse off). I liked Halamandaris a lot so for the balance of the appointment we talked about poetry, art, music and photography.
>>>I tried physical therapy about a year ago — helped some. So I went back to the same place. They had really helped Billie Barbara with a frozen shoulder. I had a nifty young therapist named Jonathan who really knew his business but insisted on calling me "Champ!" I figured he called all the men "Champ!" so that he wouldn't have to remember a ton of names. But somehow "Champ!" really bugged me. Simply couldn't get him to call me by my name.
>>>This time, when I went back I got another bright young fellow named Chris. I carefully told him about the name calling problem I had had with Jonathan. Even gave Chris one of my books. Signed it RIC Masten. And I know Chris read a few poems as we talked about a couple of pieces that he particularly liked. However, most of the time Chris calls me "Sir!" Then, the other day, Bud Ferranti, the owner of the establishment, and the therapist that helped Billie Barbara so much dropped by to see how I was doing. After we talked and as he left he called over his shoulder "See you later "Chief!" It must be endemic. Chris was there and even he laughed but as I left said "See you next Monday Sir!" I give up!
>>>Also I've been getting all kinds of sciatica home therapies, exercise schedules, stretch suggestions and even the tennis ball "Trigger Point Therapy." I intend to try them all.
>>>Perhaps next "Latest Entry" will have more to do with prostate cancer. But for now I'm enjoying the vacation If not the pain —

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...................................THE "PAIN" SPECIALIST

...................................in Hospice
...................................a woman dying of cancer
...................................was in unrelenting
...................................excruciating agonizing pain
...................................nothing helped

...................................a "pain specialist" was called in
...................................to see if he could relieve her suffering
...................................entering the room he introduced himself
...................................telling her why he was there

...................................the woman scoffed: "You mean that you think
...................................you can do something about my pain
...................................when an entire Hospice staff has failed?”

...................................he responded: "You mean that you think
...................................you would still feel this pain
...................................if I were a hungry tiger sizing you up for dinner?”

...................................he sat by her bed talking for an hour or so
...................................and as he got up to go she grabbed his hand
..................................."Leave the tiger!" she said.
...................................+++

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May 11, 2003

>>>This is the stock message I have been sending out to the good folks who have written asking why there have been no new WORDS & ONE-LINERS and no new “LATEST ENTRY” to the Prostate Cancer Odyssey.
>>>First, know that the spirit is fine and I am no where near the Garden Pavilion darkness. However, sciatic pain down right leg still a major problem. MRI shows four bulging discs — wreckage in lower lumbar region, also, arthritis in right hip and knee plus pain in right groin area where large known cancer met resides, all this keeping me from sitting at the computer for even short periods of time. These days I am only able to get around with a walker. Borrowed three of ‘em as we have a three story house. Son-in-law recently installed sturdy stair railings so I descend from walker to walker like a Pony Express rider.
>>>When I do let the pain killing chemical cocktail (Oxycontin, Neurontin and Celebrex) do their job and make sitting bearable, my mind goes all fuzzy with a kind of scrambling confusion making it next to impossible to web-master my website and weekly Words & One-liner page. But holding this crippling discomfort to the daily wind I do believe things are slowly getting better and I am looking forward to when I can once again hurl myself on to your Sunday morning cyberspace lawn. Thanks for your message of concern and encouragement
>>>March 2nd was the last posting of the weekly Words & One-liner. The world has had time to have a war since last I last posted a W&O. So to bring you up to date — the sciatic pain has almost disappeared completely. I think?? I’m not certain as I am still on the same heavy drug regiment (40 mg Oxycontin, 1200 mg Neurontin and 400 Celebrex). Anyway I can sit and lie down without much pain these days.
>>>However, because of non use my right leg has wasted badly. Two inches shorter than the left leg and I can’t get around without using a walker. It is probably all in my mind but I have discovered that when I used a cane I was still “that old sport!” especially wearing my tweed hat and leaning on the twisted wooden stick I fashioned myself. Stuck with this rickety aluminum walker however I’m “the old crippled gimp who is always in the way.”
>>>I have held off posting the weekly Words & One-liners — first because of the pain and then because of the drugs that keep my thoughts scrambled. This puts in mind of the late 1960’s. There was this writer who thought that perhaps he would be a better writer if he was stoned. He changed his mind when in the middle of a wild pot party “the answer” came to him. I mean THE answer! The one that poets and philosophers have been searching for since time began. And not only did he have “the answer” but he also had the presence of mind to go to his typewriter and type it down.
>>>The morning after he stood in the middle of his living room surrounded by the wreckage of the night before — a drunk under the piano — roaches and spilled drinks everywhere. And suddenly he remembered that he had come up with “the answer” to life and had typed it into his typewriter. He ran to the machine and rolled the paper up. “Something in the room stinks.” After that he never thought he could be creative while on drugs.
>>>Well, I sort of have the same problem myself and not wanting to send you material that was bent by 40 mg of Oxycontin I have decided to send you some of my older Words & One-liners until life comes back into focus. If what I am writing now is upside down it is not me it is the drugs!
>>>On the prostate cancer front. Not too much to tell. When my back knocked me out, Doc Hausdorff pulled me off of Taxotere thinking that there might be a connection to my sciatic problem. The only treatment I have continued is a monthly dose of Zometa for the bone mets. When I quit chemo my blood numbers were PSA <0.04. <CEA 5.7, <PAP 0.3, this on February . 10, 2003. Then on April 15, 2003 the numbers came in at PSA >0.08, CEA <4.7, PAP >1.0. Hausdorff said lets leave well enough alone and not do anything for another five weeks. On May 20, another blood draw and we will see what has been happening and decide what to do next. When I quit Taxotere it was still working so that is probably where we will go first.
>>>The good news is that our book, PARALLEL JOURNEYS a Spirited Approach to Coping and Living with Cancer. by Dr. Larry Lachman and myself is out and doing very well nationally. If you are interested go to

http://sun-ink.com/AboutPRpages/RicMastenbooks.html
http://www.paralleljourneys-cancer.com/index.html

>>>Or you can get the book through amazon.com or Baker & Taylor. Though I would prefer you order the book through me as I won’t have to give the huge percentage to the book distributors — 60%. Having to pay for all the pain medicine has really put me on the ropes financially and every little bit helps.
>>>Many of you have written and e-mailed me wondering why no Words & One-liners. The hidden message being “Are you still with us?” Well folks, I promise to let you know when I am dead.

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July 9, 2003.

>>>I suppose I’ve been living in a fool's paradise which is better than a worry wart's hell. However, recently I have been on a delightful three month vacation from weekly chemo sessions. Just doing DES 2mil/d. My blood numbers have been very good. Only recently starting a slow rise. So before Doctor Hausdorff left for a month's vacation in Europe he scheduled a bone scan, x-rays and a CAT scan of my right hip. While he was away I was to see my radiologist Dr. Brad Tamler to go over the results. I saw him yesterday (July 8th). When Brad came into the examination room he was wild with concern. He showed me the results of the x-rays and scans. Geeze!!!
>>>It turns out that I must have a hip replacement immediately!!! Evidently the knob at the top of the femur is almost completely gone (just a little finger of bone left), and the socket in the pelvis has also deteriorated, probably because it has cancer in it. However, the good news is that Tamler says that I will walk again, and soon. Also the cancer hasn't spread. The known, and only, met does have uptake but that is all. All that sciatica crap I went through was probably caused by the hip deterioration. My right leg is almost an inch shorter than the left leg. I'm told that the problem needs a big-time specialist; the operation is evidently too tricky for local docs at CHOMP.
>>>Until O-day Tamler won’t even let me walk up stairs, so Billie Barbara and I had to move out of our beloved poet’s tower bedroom. To show you the kind of man Brad is, when I told him I wasn’t sure we could get our bed downstairs, he said that he would come down the coast to our house that very evening and help move it. I laughed, and he said: “No, I mean it.” I am truly blessed, when it comes to my three doctors, Tony Shaheen (Urologist), John Hausdorff (Medical Oncologist) and Brad Tamler (Radiation Oncologist).
>>>I just learned that I go up to see a UCSF doctor (Dr. Kevin Bozic) for a pre-op look at the situation. This on July 17th, and then I'll return for the operation. When? I don't know that date yet. Pins and needles!
>>>I’m still in shock, so my sense of humor hasn’t quite kicked back in yet. Although, when I asked Brad why the bones have deteriorated the way they have he said that he suspects it may have been caused by all the Decadron (steroids) I have been taking to lessen the chemo side effects. I smiled, as I am certain when John returns from his vacation and I ask him the same question he will suspect it probably was caused by all the radiation I have been put through...... Hot potato!
>>>So, I may miss sending out my Words & One-liners for a few weeks. Sorry about that but as Arnold says in his thick German accent: “I’ll be back!” My daughter Jerri will handle answering e-mail messages while am down. For now, at least, the Saturday evening W&O mailing will go along as usual. When we know the date of the operation I'll let you know. All this is certainly a crappie way to get new grist for my poetry mill. But what the hell! What is! Is!

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.July 18, 2003

>>>Daughter April drove. Billie Barbara in the passenger seat with me on a makeshift bed in the back of our Jeep Cherokee. We are having a heat wave here in Central California, so as soon as we left the coast it became hell's kitchen. Many random acts of kindness happened on the way to San Francisco. Things like a stranger rushing to help April put oil in the car and someone helping fix part of the rear bumper that was ready to fall off. Clean bathrooms appeared when we needed them.
>>>We arrive at our destination. Department of Orthopedic Surgery. From the two women at the front desk, staff and x-ray people, things couldn’t have been more humane.
>>>The only sour note being one angry patient waiting with us in x-ray who yelled at April and me: “Be quiet! I’m in terrible pain here!” I wasn’t quick enough to respond “So what, I hurt too and have terminal cancer!” He complained to the staff about us but they told him to wait in the hall. Poor devil, it might not have hurt quite as much if he had allowed himself be caught up in the other patients’ positive conversation and used a little “cognitive deflection.” A very lonely fellow. When I came out of x-ray I staggered in announcing to the group in the waiting room: “It’s hell in there!” Cracking everyone up.
>>>Then off to the examination room where almost immediately the doctor appeared (In my experience — a first). Dr. Kevin Bozic is a seemingly most capable and very nice lad. I’m still getting used to almost all my doctors being younger than my children. A fact of life when you become a geezer I guess. I was pleased to see that Dr. Bozic had very quick and nimble fingers.
>>>I don’t know what I was expecting from this large city university teaching hospital. I suppose a group of animated people banging through the large pale green double doors, pushing a gurney and holding plastic bags of fluid in the air. Yelling stats and calling for a crash cart.
>>>To me it was a tranquil third floor waiting room. With much glass and a wonderful view of the city. The doctors’ white coats all seemed, to me at least, freshly starched. The doctors — a bit angelic, back lit, capable of many miracles.
vAfter a few pleasantries the doctor called in a young oncologist. Ignoring us they looked at my x-rays conversing back and forth about my case like two journeymen carpenters discussing how to do a renovation. The big cancer lesion in the groin didn’t seem to bother them very much.
>>>The outcome of all this is — The deterioration of the femur bone probably due to radiation egged on by 14 months of weekly Decadron (10 mgs) that I had to use to help with chemo side effects. Seems that when it comes to cancer patients — what helps here, hurts there. The guess is that all the sciatic pain problems were a result of a shrinking right femur causing the back bone to bend unnaturally, pinching nerves. Cancer not involved in this directly. Replacing the top of the femur not a problem. But cementing the cup permanently into my pelvis where cancer does exist will be a bit of a challenge. But I got the feeling that UCSF folks love a challenge.
>>>I will return August 14th to do pre-op calisthenics and meet the anesthetist. Hip replacement operation on August 15th. Hospital stay 4 to 5 days, depending on how quick I snap back. After which I will be driven down to the Monterey Peninsula Hospice for a one to two week stay of intensive rehab. I’ll post when I know more.

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July 26, 2003

>>>“You will have to get a “Surgery Clearance” right away,” said Dr. Bozic, as if I were an aircraft carrier, as if he needed clearance to land on me. I figured “surgery clearance” was not unlike the publishing business where a book can’t go to press until it is camera ready. “Go home to your GP and have it done there.”
>>>Well, I almost didn’t have a GP. My old GP was one of my favorite doctors and people, Dr. Edwin Pai, but Edwin was called out of private practice to work at CHOMP (Community Hospital of the Monterey Peninsula) and left me with Dr. Chen.
>>>I had only had one appointment with this 13 year old Asian kid. Our meeting in the examination room was a disaster. I was immediately turned off by his limp rag handshake. Nonetheless, I launched into my best “stand up” comedy routine, as I love to make doctors laugh. I’ve found that laughter brings people together. The young man never cracked a smile. He also didn’t seem familiar with the medications I was taking for my battle with cancer. We sat face to face, though he kept his eyes on the desk before him, his right knee jumping up and down nervously. I left his office knowing, that unlike Arnold, “I wouldn’t be back.”
>>>Of course, I hadn’t made the change yet, and I needed the “Surgery Clearance” now. So Dr. Chen it would be. Daughter April, who knew how I felt, went with me. Nothing had really changed, same handshake, same downcast eyes, and no laughter, but he was not as nervous. April who lived in Beijing for a time said that he was “old country” Chinese: shy, polite, and quiet. She asked me to watch his face after I joked with him. I saw he was amused but he just showed it with the tiniest reserved smile. This time when he asked about the medications I’m taking and I mentioned DES, he responded immediately with, “Oh yeah, that hormone thing.” April felt that he was most knowledgeable and thorough, and I agreed. So I took his card and saw that his first name is Kenny. That touched me somehow, so from here on out Kenny is my “main man.”
>>>When Dr. Chen was through with questions, a great deal of tapping, pushing and probing, he called in nurse Lorraine to give me an EKG. After a terribly long time on the table, he came in again with the results. “Your right bundle branch is blocked, but that is of no real concern.” “Wait a minute,” says I, “What does that mean?” “Three bundles fire the heart,” says he, “and one of the wires is cut.” Half in jest I said, “Dr. Chen, if I were a car going up the Los Laureles grade and one of my wires were cut, I would be coughing, sputtering and might not make it over.” Kenny did not smile when he said: “Mr. Masten you are not a car.” Oh well, I tried.
>>>Dr. Chen sent me to Nuclear Medicine at CHOMP for a Myocardial Perfusion Scan the next day. Fun words to say, quite an involved procedure, and really uneventful. However, I had a great time joking around with the cardiologist and technicians, Kyle, Stephanie, Jennifer and Martisa. I just called up Patty (a sweetie) at Dr. Chen’s office to find out what it was that I did yesterday. She sent me a fax of the results. “Normal exam.” So I guess I am cleared for takeoff.

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August 2, 2003

>>>For over three years now “Helpline Harry” of PCRI <http://www.prostate-cancer.org> has been shepherding this ornery stubborn wayward lamb. Harry Pinchot handles the helpline at PCRI - (310) 743-2110 and over time we have become fast friends. When it comes to prostate cancer I think Harry knows as much as anyone in the country. Dear Reader, if you are a PC survivor, it would be well worth a nickel to call PCRI (Prostate Cancer Research Institute) and ask for Harry.
>>>So the good shepherd and I are talking about my upcoming hip replacement surgery and when I mention that I was asking the surgeon to do a biopsy. Dr. Hausdorff and I have had a running argument – I think I have SCPC (small cell PC), he disagrees. Well, a biopsy will settle the dispute.
>>>Harry’s voice lighted up on the other end of the line. He said, “Ric, you have the opportunity of a lifetime.” He told me about Dr. Robert Nagourney and the EVA chemosensitivity test. <http://www.rationaltherapeutics.com> I was resistant at first but Harry kept nipping at my heels like a well trained sheepdog and the more he talked the more it sounded like something I should do.

>>>I called Randy Stein <http://www.thecancerstore.com>who is a pancreatic cancer survivor who was greatly helped by the chemosensitivity test – seven years out now and when diagnosed he was only given 8 weeks. I guess Randy showed 'em!! He sent me an excellent article from Scientific American Magazine – Click HERE to see it.
>>>The best way for me to describe what it is all about is to drop in the post I sent out to the HRPC (hormone refractory prostate cancer) list. If you have incurable metastatic PC it is a great group to be in touch with. <http://www.hormonerefractorypca.org>

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>>Yo Group,

>>>I'm about to have a hip replacement. Radiation destroyed the head of my right femur. This has been going on for about a year and a half. My right leg is almost 2 inches shorter than the left. I can't have the operation locally (Monterey, CA) because of the cancer mets in the groin area, so I will be going up to have the surgery done in San Francisco at UCSF.
>>>I've decided to have the surgeon collect tumor specimens for the EVA chemosensitivity test. It is pricey but why miss the "opportunity of a lifetime" as Harry put it. They are going to be in there anyway so why not give it a try.
>>>I'll let you know what comes of all this. If nothing - what's $2,500? On the other hand, this could be a life saving decision because if I do find I have viable chemo options, after Taxotere fails I might be able to keep this thing going for quite a while. As of now I'm on a chemo vacation but my numbers are beginning to creep up so I probably will go back to Taxotere four weeks out from the hip operation.

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>>>Everybody - Dance In the NOW!

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August 8, 2003

>>>Like a prize fighter who has trained, body, mind & spirit for a “Main Event” only to have his opponent hurt while training so that the fight is postponed for a month. Yeah, it is kind of like that. Turns out that Dr. Kevin Bozic the orthopedic surgeon wants to have a top flight orthopedic oncologist in the operating room, being as there are cancer lesions where the cup is to be cemented in. And I’m told that Dr. Richard O'Donnell is the best of the best. But Dr, O’Donnell wasn’t available until Monday September 8th. As someone about to go into the ring I want the best corner men that I can find in there with me.
>>>The postponement has upset my family and friends more than it has bothered me. Dr. Larry Lachman tells us that when someone goes through a medical emergency, so do all the friends and family. And this has certainly proven to be true. I have this female physician friend who, when hearing the news, wrote an e-mail message blistering the medical profession. Then in the middle of the third paragraph I could almost feel her look up at me, cock her eye and say, “This is just between you and me Ric! I don’t want to find that you have plastered my comments all over the internet. Well, I didn’t tell you her name did I?
>>>At our first appointment, Dr. Bozic asked me to try and cut down on the 50mgs of Oxycontin I was taking each day for the pain. Something about the drugs that they would prescribe after surgery not working as well if I was full of this opiate. Now getting off of this narcotic was not easy. I had been taking 25mg at 6 in the morning and at 4 in the afternoon. It took four weeks get off the damn stuff. When I was on it I’m told that I was always a little goofy. And as I lowered the daily dose I became more and more antsy. Like a junky I would start looking at my watch around 2 in the afternoon. Not because of pain but for my 4 o’clock fix – the good, warm, wet feeling. I’m totally off the drug now and the creepy crawly feelings are almost gone. My friends and family say that I am more like my old self again. And I thought I was fine. Yeah. Sure.
>>>“Where is your doctor when you need him? Gallivanting around Poland for a month!” I greeted Doc Hausdorff when he entered the examination room. He’s back and in the oncologist harness again. He expressed much delight that I was going ahead with the hip replacement. “Quality of Life” is a big issue with John. He asked me if I was doing anything different. “No,” I said, “just the three mil of DES and Warferin.” “I was just curious he remarked, almost to himself, as all three of my blood numbers are once again drifting down. The last test on 7/29/03 showed the PSA <0.13, <CEA <6.6, PAP <0.9 down from the 6/17/03 blood draw - PSA >0.16, >CEA >7.0, PAP >1.4. Not much difference but the direction is right! No Taxotere for a while! Yippee!
>>>In the August 2nd posting I mentioned that I am going to have the EVA chemosensitivity test done. I also mentioned in passing that it was pricey, $2,500, and if it doesn’t work, what the hell. I have thrown away more than that on foolish things in my life. If it does prove valuable then it could be a life saver down the road. Well, two days ago I get a letter. I open it thinking it would be a book or CD order. The envelope contained a check for $2,500!!!! And this note:

---

>>>“I read your latest update and found the references most enlightening. It sounds to me like you do have an unusual opportunity for EVA chemosensitivity testing since you have been off chemo and will be having surgery that can hopefully collect the necessary samples for the testing.

>>>My take is that you should not miss the opportunity, there is no requirement that you follow the recommendations as a result, but at least you will not have left this stone unturned.

>>>To make sure you are not letting $2,500 interfere with that decision, I am enclosing a check for that amount as my contribution to the “science” of your particular PCa experience. Your contribution to the PC experience has added a lot to my understanding (and I’m sure many others) and has left me with a new attitude for the time that I may face some of the same or similar decisions.

>>>May God’s Love and Peace bring you and yours comfort.”
.

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>>>Stunned. Moved to tears. I had already decided to go ahead with the test but we were going to have to put it on a credit card. And then this! I have said it before about little things, “In this culture it is easier to give than to receive.” And I did have to deal with that hang up but today the world looks to be a "kinder gentler" place and I can tell you that I have been visited by an angel.

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August 19, 2003

>>>A sad follow up to the above. We received the check on August 6th. On Friday the 8th, because my benefactor was coming to the Monterey Peninsula for a Bach festival event. He called and came to visit that very afternoon. Billie Barbara and I were thrilled to have him come to our Palo Colorado mountain top home. We spent about an hour and a half visiting under an umbrella out on the deck. When he left I told Billie that I felt as if I had known the man all of my life. And I just knew that our relationship would grow over time.
>>>Then on the evening of August 16th I received this message from his son.

>>>Hi Ric,
>>>I'm writing you with very sad news. My father, ___, passed away Thursday afternoon after a severe stroke. He went peacefully. He told me last weekend about his visit with you and how much he enjoyed your story and book. He was very pleased that he could help with your upcoming surgery. I hope everything goes very well for you. Thank you for sharing your story with Dad.

>>>So you see, as it turns out, I was really "visited" by an angel. I am still in deep mourning. I feel as if I have lost a brother. I have not yet come to grips with this great tragedy. The loss of what might have come to pass between the two of us in all those lost tomorrow's.

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September 3, 2003

>>>I’m a member of an on-line advanced prostate cancer support group, the HRPC (Hormone Refractory Prostate Cancer) list. Our questions, suggestions and conversations almost always have to do with “Treatment and Cure.” Our leader is a very knowledgeable fellow named Bob Benson, a long time PCa survivor. A couple of weeks ago Bob, who’s PSA is rising again put out a message with this subject line --- “On dealing with patient anxiety.” For the first time that I can remember the psychological and philosophical side of our disease was talked about openly. Something that I believe needs to brought up and discussed constantly. The following are a composite of some of the posts I sent—

>>>I would guess that every PCa survivor feels like “Prostate Cancer's Job.” God having singled me out to heap boils upon. In my case, it has been one thing after another for almost five years now (although I have probably had prostate cancer for two oblivious decades or so). I had my first PSA test when I was 68 but as it was done with a number of other blood tests I never bothered to ask my GP about the results. No news is good news. A year later because of persistent pain in my groin my GP told me to go to a urologist (found one in the yellow pages) who did a PSA and found mine to be 71. He immediately scheduled a biopsy but two days later called it off when he saw the PSA taken the year before was only 5.02. He called saying that, "Never before in history has a PSA number risen that far that fast. It must be an infection." So I suffered sever groin pain for the next six weeks and turned out to be allergic to the damn antibiotics he gave me. The follow up PSA was 81!
>>>The biopsy was finally performed and this "PCa Job" was told he did have prostate cancer and that it was out of the capsule and had metastasized to the pelvis bone. Gleason score 9. Immediately the urologist pitted my apricots! He did this because he said he knew my financial situation (I'm a poor poet) and Medicare wouldn't cover chemical castration. I found out that Medicare would cover the chemicals eleven months after the fact, when I finally went to my first PC Support Group. Of course, I blame myself for being an ostrich --- not getting a second opinion and/or joining a support group right out of the chute. But I was new at this and scared to death.
>>>The drug Casodex kept my PSA at 0.2 for six months. Then the number began rising again and I was passed along to an oncologist, the urologist actually saying "There is nothing more I can do for you." Talk about sounding a death knell. This after the SOB cut my balls off needlessly?
>>>At long last I began being a pro-active patient. The CAPTAIN of my ship! I went on line and found the PCRI and "Helpline Harry" a.k.a. Harry Pinchot & Dr. Stephen Strum. They insisted I have more than just my PSA checked. I had to almost force my local doctor to do a complete blood work up. He finally did and while my PSA was a modest 1.6, it was also discovered that my CEA was 898. But my onco said "Ric, you are feeling pretty well -- Just a little groin pain -- your PSA is low so let’s just look at the high CEA number as an aberration." I told this to Strum and Harry. They begged me, no they ordered me, to go to Oceanside, California for a Prostacint and CEA scan. Which I did, sneaking off, feeling like I was cheating on my doctor. The CEA scan revealed that the lesion in my right pelvis was hot and lit up like a Xmas tree. My home oncologist, bless his heart, ate crow and put me on a regiment of Taxotere 25mg/M2, Decadron (10mg). Immediately the CEA number began to fall. But at the third session I got a horrendous chemo spill. Took about three minutes before I felt the sting. Two days later the back of my left hand was a giant burning blister.
>>>I immediately got a port-a-cath. Best thing I ever did. For about eight months the battle went along uneventfully except that the chemo brought on peripheral neuropathy. (I no longer have any feeling in the toes of both feet) Then once again the groin began aching. A bone scan was done and
showed uptake in the known big lesion in the groin, so I began radiation
(3DCRT Pelvis 5 wks with 50.4 Gy).The lesion quickly began quieting down but the RT gave me an awful burn scaring the inside of my penis. What helps here, hurts there! Since then I have had to go to ER at 3 o’clock in the morning to be catheterized and clear the passage. --- This has happened twice. I figure I'm in for a Roto-Rooter job somewhere down the road.
>>>Next cancer related (though we didn't know it then) problem was crippling sciatic attacks. Had three epidurals. Didn't help. And all those steroids along with the steroids I was taking each week with Taxotere created a chemical imbalance in my brain and I went into a deep, deep dark depression. Came close to committing suicide a number of times --- keeping this up until my wife and family (bless them) checked me into the local loony bin to get straitened out. Three days of counseling and seeing a psychologist began to clear this mess up. The drug Celexa helped me out of that depression, slowly but surely.
>>>Recently it has been discovered that the radiation also deteriorated the head of my right femur and all the pain that was thought to be sciatic and back related turns out to be the fact that the femur bone has been driving up until my right leg is now two inches shorter than my left. You can imagine what my back bone looks like. Tell me about pinched nerves!
>>>Hip replacement --- Coming up September 8th. Being “PCa’s Job” of course, there is cancer in the area where the cup is to be cemented, and our local orthopedic docs sent me off to UCSF to be worked on by a couple of big guns, a renown orthopedic surgeon and a top flight orthopedic oncologist.
>>>"Helpline Harry" suggested that while they are in there sawing and chopping where the cancer tumors are why not have an AVA chemosensitivity test done. I am having the EVA chemosensitivity test done as I want to know what comes after Taxotere fails. Harry is fairly certain that I have some form of small cell prostate cancer. My local oncologist doesn't agree. He thinks my PC is run of the mill. An up coming biopsy of the tumor in my hip will settle that argument.
>>>You may wonder why I remain with my local oncologist when he has fought me on so many different tests, scans and therapies. Well, he may be re-active but he is a kind caring man and in the end will let “the captain” do anything I insist on and diligently monitor the outcome. And he learns from my case and uses what he has learned with other PC patients. I know this for a fact. But around things like the chemosensitivity test he argues, "Ric, you are not a test tube." Well, my live tumor is ME and we will see what comes of the test. And when the AVA test results come in he will confer with Dr. Robert Nagourney, a ground breaker and expert in this area.
>>>So I'm off to become an "artificial hipster." The other day a friend asked me if I was scared. I said, "If I die on the table I will do so in a blaze of glory because of my ongoing "Prostate Cancer Odyssey" and all the lives it has touched. If I wake up on the other side I can go back to fighting incurable advanced metastatic prostate cancer and all that entails." My friend replied with a grin: "A win win situation if there ever was one!"
>>>But in your response to the above Bob, I do have a bone to pick with you. Something which I believe goes directly to the "attitude" issue. Your closing remark of, "I practically become apoplectic when someone writes a book or an article about "the gift of cancer." It's one gift I'd give away in a second."
>>>I have no idea of what kind of life you led before prognosis. But when I speak to Support Groups, College & University classes, High School assemblies, Church congregations — hell, any group I find myself in front of, I have a little set piece do.
>>>I first ask, "Is there any thing that you have done -- or that has been done to you -- any catastrophe or ailment — any one thing, that if you could be rid of it you would jump at the chance?."
>>>Then I quickly go on to say, "Not me!" Usually everyone looks shocked, because like you Bob, there will be something like cancer that they would "give away in a second."
>>>I go on, "Oh I have done some mean, nasty and hurtful things to people during my life, things that I'm ashamed of and wish I hadn't done. I was a crappy father "out on the road" pursuing my dream when during their formative years my kids really needed to have a dad around. A few years ago I wrote the four of them a letter of apology. My daughter April wrote back. "Don't apologize Pop! I would much rather have had father who followed his dream, than one who gave his dream up just to be there for our dance recitals and football games. I wonder what kind of poison you might have put on your wife and children for being the reason you gave up the touring folk-singing and ‘Speaking Poet’ career?” This is wonderful and I do have three wonderful daughters but I also have a 46 year old "crack addict" for a son. In a three year high school football career his dad was only in the grand stands once to watch him play and take him for pizza after the game.
>>>Would I go back, if I could, and change any of this? Not on your life, because I’ve changed from making those awful mistakes. You can not learn life lessons out of a book -- you have to live and learn. The crime is not learning from your mistakes.
>>>And now we are back to the Big C. I hate to tell you this Bob but PCa has been the best thing that has ever happened to me. The cancer is going to make me suffer more and in the end probably kill me. But I have had the best five years, spiritually speaking, of my life. Beginning the day my oncologist said, "And Ric, when the time comes I promise you a graceful end." From that moment forward I have had more close moments with my wife and children, enjoyed more sunsets, had more fun with my dog Zee Zee. I have been more awake in the past few years than I was in the 69 years that proceeded it. Miss all that just to live to die of natural causes at 98? No way brother!!! To say nothing about the friends I've met in cyber-space and in the real PC Support Group world. Dear brave people that I would have missed had I not had this damn disease. Nope I'll take the damn disease! Do I hope that they find a cure for cancer? Of course, but that is a different issue.
>>>I don’t want to die? I don’t want to suffer? "But everybody dies!” and half of life is suffering. But as far as this “PCa Job” is concerned the most important thing here, is "Does the cup look half full or half empty?" It is attitude, attitude, attitude!!!
>>>But then what do I know? I'm just a crazy poet.

>>>There was this church focus group discussing what the story of Job was all about and the inevitable question came up, "Does Really God Love Us?" After much discourse and debate the consensus was "He must not." If He really cared for us how could He allow his most beloved to suffer cancer, AIDs, and all other deadly diseases? How could He look the other way while we are being plagued by little things like tsetse flies, mosquitoes and mad cows -- big things like war, earthquakes, tornadoes and floods? How can He allow the Four Horsemen of the Apocalypse to run roughshod over His devout, faithful children? The group plaintively looked around the room asking, "Can any one explain this ungodly behavior?"
>>>An old rabbi stood up, "It's just that like us,” he said, “God loves a good story."

>>>My own personal story continues as this Fiday, September 5th, I head up to San Francisco for pre-op at UCSF and then return to the hospital Monday morning to let Dr. Slash and the Gas Man have there way with me. Hopefully coming away from all of this a dancing artifical hipster.

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September 21, 2003
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>>>The longer I live, the more I realize that everything comes with some good news and some bad news. To expect anything else is to be dimwitted. My recent hip replacement and the accompanying AVA chemosensitivity test certainly does flesh out the above old saw.
>>>The good news is that I was climbing up and down a flight of 20 stairs the day after the operation. Full weight on right foot, haven’t been able to do this for eighteen months. At UCSF they all said that they had never seen anyone snap back as quickly as I did. I got to come straight home and not go to Hospice House for rehab. Jerri said that a number of you began e-mailing condolences, thinking that from hospital to Hospice could only mean one thing.
>>>You wouldn’t believe how cool it is to be tooling around in my brand new Zimmer ZCA featuring a Versys Heritage cemented stem, size 14 standard neck offset. And Wow! The words I get to drop now, polyethylene acetabular, endotracheal anesthesia, trochanter, epinephrine, fascia lata to name only a few. How can I miss being the life of any future party?
>>>Great staff surrounding Dr. Bozic. Anja Strehlow, Dr. Bozic’s Tonto, Robin and Watson running ahead to clear the way and see that everything came off smoothly. Which it did, well, almost. I told everyone that I was violently allergic to medical tape. It was on my chart, and on my wrist band but the nurse who dressed the wound after the operation must have missed it. The next day boils (Job again) had erupted all around the incision where the tape had been.
>>>Dr. Kevin Bozic and I never reached the point where we were first name buddies. He was all business from the get go. I guess it is true when they say the specialist is a totally different breed of cat. Kevin is a lovely, dedicated, capable young man who flew by on rounds each day with not much more than “Hi, How are you. That’s good” and then he was gone. No jocular teasing and friendly arm punching. I had the feeling from the moment we met I was not much more to him than something he could fix. And fix me he did! No joke! And I wouldn’t hesitate to recommend him to others in my boat.
>>>The bad news is that the AVA Chemosensitivity test people did receive the Fed-X package of living tissue but there was not enough tumor on which to do a viable test. It’s not so much that I won’t have results that could prove handy one day down the line. It's just that the miracle stopped short. To me the lack of test results isn’t so much bad news as tough luck.
>>>The bad news has to do with the angel coming into my life as he did, with the $2,500 gift and then, not a week later, dying of an embolism. --- Our brief meeting so positive and promising — ending in sudden loss. With all of this magical and moving build-up, it is almost inconceivable to me that the miracle didn’t continue on. However, on the original message that came with the check, hand written under his signature, the angel scribbled that if I didn't spend his gift on the "test" I was to use it anywhere else in my life. So, I have the dear man to thank for paying the extensive expenses surrounding our trip to San Francisco. Seven days in a motel for Billie Barbara and daughter April. Meals, shuttle and taxi fares. The entire $1,800 debit is no longer on my credit card. Not quite as dramatic as a life saving "report" from RATIONAL THERAPEUTICS but a huge help when it comes to our struggling personal finances. And yet I am full of sadness. It seems to me, angles have more significant things to do than pay motel bills.

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October 11, 2003

How is the “artificial hipster’s” recovery coming? I have been getting a lot of messages asking that question. Well, it's just over a month now, since the saw-bone incident, and my stock response is: “Tennis anyone?”
>>>On the prostate cancer front: Know that I have not done anything about PCa for almost eight weeks now, since the hip hip hooray. Last blood draw was on 7/29/03 - PSA 0.13, CEA 6.6, PAP 0.9. Then last week on 9/29/03 the numbers came in at PSA 0.50, CEA 10.5, PAP 1.0. Drifting up but nothing to get excited about. Doc Hausdorff and I decided to go back on Low Dose DES 3 mg/day with 2mg/day Coumadin to ward off clots. I will do blood again in five weeks and then we shall see. To tell the truth I’m in no great hurry to go back on Taxotere 25mg/M2. The neuropathy in the toes of both feet is most aggravating. And there is not much that can be done about it, except live with it. “Live” being the operative word here. At the moment I’m in no hurry to feed the numbness until I’m forced to.
>>>As I have related the chemosensitivity test fell through as there wasn’t enough tumor sent to the lab to work with. I have been waiting for the UCSF biopsy results so that I could end the dispute Dr. John and I have had over the years about the brand of PC I have. Whatever brand it is doesn’t make much PSA, but at the same time cranks out CEA, the marker I need to pay attention to. A couple of years ago I had a PSA of 1.53 and while at the same time a CEA of 898. Well, the biopsy report came back and “there was no viable tumor identified.” So we still don’t know. This and the chemosensitivity test were large motivating factors in my deciding to do the hip replacement. No results from either. However, now that I’m getting around so well I’m glad that I did decide on that wild ride with Doctor Slash up in San Francisco last month.

>>>(As you can see not much to report.)

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November 19, 2003