---

May 1, 2006

Mayday! Mayday! Well not quite but slowly headed that way. To sum up my May 1st appointment with Doctor John (my oncologist) and my present situation I will give you something old, something new, something borrowed and something blue.

SOMETHING OLD

....Blood numbers still creeping up as they have been since I went off Taxotere (chemo) in 02/08/03. It feels like yesterday but its been over three years since that last trip to the House of Drips and I have managed fairly well using DES 3m/d and then Nilandron 150mg/d and Zomeda once a month. Over all that time my PSA has risen from 0.05 up to the last blood draw, which puts the PSA presently at 5.63. On 02/08/03 my CEA was 5.7 and three years later it is now 29.4 down from the last blood draw 04/13/06 when the CEA was 38. As expected the CT scan showed that the lung mets have grown a bit the largest being 1.5 cc. Nothing to get all that excited about.

SOMETHING NEW

....However, the CT scan revealed that I have developed some small nodules in the chest lymph nodes. The largest also being 1.5 cc in size. Dr. John and I decided to get my Alaskan poetry tour behind us before our next get together. Labs on June 5th. After which I head for Fairbanks on June 8th and come home on June 12th and on June 13th the doc and I will re-evaluate. I have a creepy feeling that chemo will be soon be back in my life. Of course, I have had that same feeling for over three years now.

SOMETHING BORROWED

....I keep asking my friend Ron Cook: "What I was like when I was on Taxotere?" He assures me that I didn't behave any differently than I do now. But the problem for me is that I must look back through the two episodes that forced me to go off chemo back there in 02/08/06. The first being that I was so fatigued I was unable to go with my family to the airport to see my grandson, Little Ric as he left for a year's tour of duty in Iraq. Today it is hard to imagine being that tired. The second and more important reason was that all the steroids and other chemicals I was consuming sent me off to the booby hatch for three days. "Roid Rage" had me super depressed and dangerously suicidal. From where I am today it is difficult to look beyond those two chemo induced situations and see that I really did handle the weekly Taxotere drips very well and lived quite normally for nearly two years. But to underline the way I was feeling the last two months I was on weekly Taxotere I shall borrow a poem I wrote to my friend Joaquin Alameda. At the time we were engaged in a spirited back and forth e-mail ping pong exchange, It was written to describe for Joaquin how I was feeling during that difficult period and reading the piece again today I realize why I dread the day I am forced to go back to the House of Drips.

.....................PING PONG AND ME
.....................WITH CHEMO FATIGUE

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

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

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

SOMETHING BLUE

....I have just had a cataract operation and I can't believe the colors I have been missing, especially the blue hues. I mention this in case any of my PC compatriots are thinking of getting a cataract removed. Most of us PC fighters are on the drug Flomax to keep the stream from piddling down on to our shoes. If you are using Flomax be sure to tell the eye guy that you are on this medication because it makes the iris wobbly and hard to work with. I had my left eye done a year ago and the old (now retired) eye guy had all kinds of trouble but never told me why. The young new eye guy read the old eye guy's operation report and told me that he had some new tools that would hold the iris ridged while he inserted the new lens.
....I have a poem called a PLACE FOR CONSERVATIVES in which I relate that I would never want some young hippie type airline pilot flying me from here to there. Some kid with long hair and a pierced ear entering the cabin giving me the thumbs up: "Yo, dude I'm gonna take us for a ride!" No way, not me, I want a steely eyed unsmiling grey haired old conservative to fly my plane! A woman I met in an airport waiting room agreed, telling me that the she looks at the seat of the pilots pants before she boards a plane. If they are new and sharply creased she will wait for the next plane but if the pilots trousers are worn and thread bare she knew that here was a pilot who's hands she would gladly put her life into. Jokingly, I told young Dr. Whisler these young man / old man stories - BTW he tells me he is related to the famous artist - and he laughed saying that half of his patients feel the way I do, but at the same time the other half feel that they would rather have a young doctor who is on the cutting edge of his specialty with steady hands and a keen eye. Charley is only 34 (hell, Dr. John, my oncologist is five years younger than my youngest kid) but the job Dr. Charles Whisler did on me has changed my outlook on life. Out with the old thinking and in with the new, where the world has suddenly become ultramarine, azure, cobalt, navy, sapphire, cerulean, indigo, blue, blue blue. So Charley Whisler you are an artist too !

Stay Tuned!

---

June 12, 2006 - the day before
June 13 - the results

....I see Doc Hausdorff tomorrow morning and as usual my best friend, Ron Cook, will be at my side because if the news is not good I tend to go deaf, dumb and blind.  It is important to have a detached person present to take notes so that I can be briefed later when I calm down, Ron being able to tell me what the doctor really said. My wife Billie Barbara used to go along with me but we discovered that when the news was bad she also went deaf, dumb and blind, which reminds us that it is all too easy for the patient to forget that the whole family is diagnosed with a life threatening disease, but only the patient is getting the treatment
....A close friend of mine had a doctor tell him that if he didn't do such and so (things like taking his medicine without fail and eating more to put weight on) he would be dead in a month. The only thing my friend heard was the doctor say was "You will be dead in a month."  So he called up all of his friends on the telephone and said "good-by," telling us that the doctor told him that he "only had a month to live!" He lived on for more than a year but at least he did get all of his "good-byes" in. So, Ron will be there taking copious notes as my oncologist reports on how the blood tests turned out (the PSA and CEA) and what treatments will be recommended. I know I have posted this poem a couple of years back but some things never change. .....................

.....................PSA DREAD

.....................the battle
........ ........... with the “Big C” monster
.....................is scored by the numbers
.....................like a jury trial
.....................digits sequester and deliberate
.....................bringing in a verdict every six weeks
.....................under a microscope the blood I bled
.....................is analyzed — the evidence scrutinized
.....................the side effect of these proceedings
.....................being PSA dread

.....................in capital cases such as mine
.....................the deliberations never end
.....................and over time I’ve been both
.....................acquitted and condemned
.....................the only constant being
.....................the tide of apprehension
.....................that ebbs and flows
.....................invisible as air — in my belly
.....................in my brain — even seeping
.....................into positive lab results
.....................PSA dread

.....................shackled to trepidation
.....................I willingly take the stand
.....................to share these experiences
.....................with others
.....................like I am doing now
.....................publicly bearing witness in my writing
.....................with pencil in hand I’m able to stare
.....................the prosecutor down and free myself
.....................with the cutting edge
.....................of testimony like this

.....................and so far
.....................this is how I have survived
.....................this is why I am still alive
.....................+++

....I thought it would be interesting to give you a close up & personal peek at what is going on inside me the eve of the my next appointment with Dr. John Hausdorff. The next paragraph will be written tomorrow evening.

....And here we are, post appointment — the day we decided that it was time for me to go back to chemo. (Weekly Taxotere 35mg/M2, Decadron 10 mg. 3wks on, 1 wk off ) This situation has been like waiting for a train I could see coming but didn’t want to arrive. Every appointment this last year found me dreading the day the IV engine would come rolling back into my station. While Ron, my PC roadie, and I waited for Doc Hausdorff, I asked the nurse who took my blood pressure to bring me a copy of the blood results to look over while we waited for the expected hour and while Dr. John did for someone else what he had done for me on my first appointment. John is a doctor that gives his patients all the time they need. Ron wondered why John didn't just schedule his appointments an hour later, knowing that he would more than likely be an hour behind the set schedule. It makes sense but I doubt that it will ever happen.
....Anyway, I had the PSA and CEA numbers about a half an hour before Hausdorff would be coming into the room, and I saw that in the last six weeks my PSA had jumped from 5.63 to 9.86. That is close to doubling, so before the doctor arrived on the scene I had already put myself back on Taxotere.
....One funny thing happened while waiting for Dr. John. — My latest book WORDS & ONE-LINERS - TAKE 2 is part of the reading matter out in the reception room and Bevela, the receptionist (who sells Ron and me Oakland Raiders tickets on the side each year - and in the Black Hole yet), came to the door. She asked me if I happened to have a book in my car, as there was a woman out in the reception room who wanted to know where she could get a copy. She ushered that woman and her companion into the examination room while Ron ran out to the car to get the book. When he brought it in to the room the woman said, "Oh, that's not the book I was speaking of." But when I informed her that my book had a cancer section in it and read her a couple of selections and showed her a few of my one-liners, she decided then and there that she HAD to have my book and asked if I would sign it. While, I was reading the two poems to these very nice ladies, Hausdorff arrived at the doorway but held back and didn't enter the examination room. Mind you, this was after I had waited over an hour, John telling Ron that he didn't want to interrupt my reading. The woman bought the book right there in the examination room, while John went off to see another patient before he came in to see me. This of course added another twenty minutes to the wait before the doctor was all mine. But when you have advanced prostate cancer you might as well have as much fun along the way as you can.
....Seriously, I am almost relieved that the "back to chemo" day has finally arrived. In some ways when you are a savvy PC fighter it is often more nerve wracking waiting for the other shoe to drop. I have had a three year vacation from eighteen months of Taxotere, doing nothing more than DES 3mg/d and Nilandron 150mg/d. I feel great at the moment, except for the peripheral neuropathy (pain and numbness in the toes that still bothers me three years out from my last Taxotere drip), so on the way home I spent the $30 from the book sale on a small ice chest and four ice packs to have with me next Monday. Helpline Harry of PCRI said to put my feet on the ice packs to close the capillaries so that the poison can't enter my toes. And for me Harry's word is gospel.
....I am in no hurry to die so it is back into the ring for this old PC pugilist. I am having a CT scan an hour before I start chemo next Monday to have a base line on how the mets in my lung and lymph nodes are reacting to the treatment. I will see doctor Dr. John in five weeks just before I start my second chemo go around.

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July 17, 2006

.....Yesterday, full of "PSA Dread" (see above), I got out of bed to head off for my appointment with Dr. John Hausdorff, my oncologist, to review lab reports after which I would be starting my second cycle of 3wks on 1wk off Taxotere 35mg/M2.  And I must admit the past 4 weeks have been quite a roller coaster ride. The day started out full of bad omens.
.....Bad Omen #1:  My appointment was at 11:20 in the morning and the phone rang at 9 AM.  It was a nurse at Monterey Bay Oncology telling me that their CBC (Complete Blood Count) machine was down and I would have to go to the Community Hospital for the test before going on to Ryan Ranch where Monterey Bay Oncology has relocated. This would mean that I would have to leave 45 minutes early to get the test before going out to Ryan Ranch, which is about an hour from where we live in Big Sur. I immediately called my oncology "roadie" Ron Cook and asked if he could leave for town 45 minutes earlier. "No problem." He would walk to my house, as he had loaned his car to a friend, and we would go in my car
.....Bad Omen #2:  My battery was completely dead as I had left the lights on. So we franticly called our friend Owen who was just about to leave for town and asked him to bring Ron's car up and we all would go to town together.
.....Bad Omen #3:  The Community Hospital took twice as long as they usually do drawing my blood. Then we raced out to Monterey Bay Oncology and walked through the door at exactly 11:20.
.....I was sure that Bad Omen #4 was going be the results of the PSA & CEA. I should add here that I had been on weekly Taxotere 25mg/M2 for 24 months with only one five-week vacation while I did 3DRT. This was three years ago. But this time around Doc Hausdorff upped the dose to 35/M2 and after three weeks I was very fatigued. Also, whenever I blew my nose it was spotted with blood and this time around I have this constant queasy feeling that I never experienced when I was on Taxotere before.
.....I called Helpline Harry and he told me not to expect too much after only three sessions. I then noticed that Dr. Hausdorff hadn't even scheduled a PSA and CEA test before I was to see him, which I took as Bad Omen #5. But as I have told you before, I'm the Captain of the Ship. Dr. John is just one of my navigators.  So I demanded that we do labs before I was to see him. He always does what I think should be done with out any argument. So, on May 12th during my week off Taxotere I went and got a PSA and CEA. I was also told to get some saline spray to keep my nose moist and was prescribed an anti-nausea drug.
.....Waiting for Dr. John to show his face in the examination room door I was full of what I call the Homesick feeling. Usually John is always behind schedule and keeps us waiting for an hour or so. But this time he came through the door after only fifteen minutes. I wasn't in the mood for pleasantries and said: "What do the numbers tell us. He leafed through the huge file he has on me and said: "Well, your CEA, which was 40 five weeks ago, has dropped down to 38. It has been hanging around in the 30s for over a year now, so at least the neuroendocrine disease is fairly quiet. Then as John was about to tell me what my PSA number was the phone rang and I sat there as he spoke with another doctor about one of his patients who was in real trouble. When the call was finished he first told me what I already knew – that my PSA had almost doubled going from 5.69 to 9.86 in the five week period before I went back on Taxotere. He said speaking very slowly "your....PSA....is....now....2.06! Which deserves a jig!" And up he jumped and did one. All I could say to myself was "Oh, ye of little faith!"
.....Because of all the side effects we decided to cut my Taxotere dose back to 30mg/m2.
.....This time around I’ve been taking two frozen ice packs in a small cooler, that looks like I'm carrying around a heart or liver for transplant, to the office. I keep my feet on the ice packs all during the infusion and so far I'm having no problem with pn (peripheral neuropathy), which was a big problem before.
.....I take 10 mgs of Decadron with each infusion and I can't sleep the night after. Does anybody out there have an idea about what to do when the steroids keep you awake? Last night I got up at 3 in the morning and finished a poem I have been working on during the day. Might as well put the sleepless nights to work.

.....................WITH DEEDS AND WORDS

.....................in restaurants my grandson
.....................heads for the Men’s room
.....................the moment the waiter announces “My name is Ted.
.....................and I will be your server this evening.”
.....................Nathan knows what’s coming
.....................“Hi Ted, my name is Ric. I have “terminal” cancer
.....................and need you to work with me here
.....................to keep me from being too soon dead.”

.....................no dairy, no egg yokes, olive oil only
.....................tomatoes and ocean caught fish are OK —
.....................et-cetera, etceteras
.....................and though Nathan remains incredulous : “Grandpa!.”
.....................I find that the Ted’s of the culinary world
.....................are only too happy to guide me
.....................through every entrée’s ingredients
.....................adding and subtracting
.....................until we come up with a perfect cancer fighter’s meal

.....................whether this bizarre conduct helps is not the point
.....................I strongly feel that by so doing
.....................I am aggressively addressing cancer
.....................plus it's always fun to see the chef
.....................at the kitchen door peering into the candle lit gloom
.....................to see who is dying in his dining room

.....................certainly this is not the behavior
.....................of a passive cancer “survivor”
.....................it is the action of an assertive cancer “fighter”
.....................battling with a disease that even
.....................in this day and age can not be beat
.....................but with effort and attitude it can be held at bay
.....................for instance saying “chemo” without adding
.....................“therapy is a dangerous practice
.....................“chemo” is a poisonous monster to be avoided at any cost
.....................while “chemotherapy” is a street to wellness and health
.....................so watch what you say
.....................and watch what you eat
.....................+++

---

August 14, 2006

.....Monday's are my "chemoTHERAPY" days so that by the time Friday rolls around I'm feeling pretty good for the upcoming weekend. I capitalize THERAPY because the treatment seems to be quite therapeutic so far. For those of you interested in the particulars last Monday I began my third cycle of Taxotere 30mg/M2, Decadron 8mg  -- 3 wks on, 1 wk off.
.....I arrived last Monday to begin the third cycle but because the "House of Drips" won't begin a new cycle without the patient seeing the doctor during the week off which in my case hadn't happened. It seems that there was some mix-up in my appointment schedule, so nurse Vivian went to Dr. John to see what to do, and because the PSA, CEA and PAP were done on Aug. 7th I got the go ahead to start cycle three and was told that John would stop by during the drip for a quick consultation. Vivian had already brought me the results of the PSA which had happily dropped from 2.06 after the first cycle coming in at 1.04 after the 2nd cycle (the lowest it has been in over two years.) The CEA was also lower this time, down from 38.4 to 29. The PAP 0.7 lowest it has ever been. So good news there.
.....John didn't find the time to visit me during the drip but we did pass in the hall as I was leaving. We talked for a minute about how long I would be staying on "chemoTHERAPY". "Until we get the numbers down under 1.00 and keep them down for a cycle or two." he said. Then, after another CT scan to visually see if the nodules in my lung and lymph node had shrunk, and also another bone scan to see if the known skeletal mets were still indolent (stable) I could go back on vacation. Our doctor/patient appointment lasted about 3 minutes and I wonder if Medicare covers passing a doctor in a hallway.
.....What I find annoying is that I seem more ill at ease when the numbers are good. In my case at least, bravery and courage are more difficult to muster when the war is going well. But then waiting in the trenches before the next charge has always been the most difficult part of any upcoming battle. And those of us struggling with advanced PC do find ourselves in an ongoing war.

---

.September 11, 2006

.....I guess I would put this oncologist appointment in what could be called limbo. At the end of the third cycle of chemoTHERAPY (Taxotere 30mg/M2, Decadron 8mg  -- 3 wks on, 1 wk off) my labs having been done on 09/06/06 we find that the PSA has risen nine one hundredth from 1.04 to 1.13 and the PAP has risen two tenths from 0.7 to 0.9. For some reason the lab made a mistake and I didn't get a CEA number this go around. I realize these changes are infinitesimal but in the blood test game "direction" is everything not "image" as some tennis players would have you believe! So here I am stuck in limbo.
.....Dr. Hausdorff has scheduled another CT scan for Monday 10/02/06 to find out if the nodules in my lung and lymph nodes are diminishing. Also, for another round of labs. And when we get together on 10/06/06 I will find out if I can go back on vacation. I have a poetry reading and PC Support Group program set up in Fairbanks, Alaska, the first weekend in November. I plan to go no matter what happens but it would be nice to be free from the fatigue that comes along with my visits to the House Of Drips. John thinks there is a good chance for this to happen and doesn't seem a bit perturbed about the slight rise in the PSA and PAP. But he is the doctor and I am the patient and patients do bite their fingernails which Taxotere is turning brown and making a bit brittle. It's also leaving me stroking a wispy beard that is barely there,
.....However, one wonderful thing happened during my appointment because I took my lifelong friend Owen Greenan along with me as well as my usual "oncology roadie" Ron Cook this time. Owen's older brother Jim Greenan was sent by his GP to Dr. Hausdorff who would be the oncologist that discovered that Jim had runaway cancer all through his body and John had to tell Jim that he was "terminal" and had about two to four weeks to live. Said it was time to think about palliative care.
.....Now, Owen's' brother was someone who during his entire life had always disliked doctors, perhaps hated is a better word to describe how Jim felt about the entire medical community but when Jim called Owen to give him the bad news he also said that Dr. John Hausdorff was a wonderful man and handled a very difficult situation in a most caring and gentle way.
.....So Owen wrote Dr. Hausdorff a "thank you" letter that he read aloud to John during my appointment and gave him an article he had written about his older brother who had been a Top Gun flyer in WWII. It was quite a moment! One I shall not soon forget. To be an oncologist who has to deliver news like this to people that he had grown to like and admire must be terribly difficult.
.....Maybe that is why many doctors and oncologists distance themselves from their patients, something John simply does not do. I now count him as one of my best friends. And after meeting his vivacious wife Goshka, at the Oncology Art Show I think even more highly of him now.
.....Once again I recalled John's words when I met him that first appointment 6 years ago. Putting his hand gently on my knee, he told a very frightened me that "when the time comes Ric, and it will come, I promise you a graceful end." As Captain of the Ship one could not ask for a better navigator!

.....................THE CAPTAIN OF THE SHIP

.....................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 full of gleaming implements of cure
.....................when all it really contained
.....................was a jar full of leaches and a auger
.....................for drilling holes in the 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 to hide out
.....................in the Straits of Magellan to 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
.....................together we scan the horizon
.....................hoping to see where some
.....................medical genius has begun
.....................digging the Panama Canal
.....................+++

---

October 6, 2006

.....When you have "advanced metastatic prostate cancer" these kind of appointments with one's oncologist don't come along all that often. Dr. John sitting down at his computer to get my Monday, October 2nd CT results and blood numbers.
.....Before I let him talk I made him read the letter I had received that very afternoon from California State University, Monterey Bay informing me (an old flunked and dropped out of 5 colleges in my Freshman year dude) about CSUMB's intention to bestow upon me an Honorary Doctoral Degree of letters and also extended the campus community's invitation for me to present the keynote address at the commencement ceremony on May 19th, 2007. So I told Dr. Hausdorff that he HAD to keep me alive until that date. After which, I told him that he was to address me as Dr. Masten. Earlier that day I had asked my learned friend Ron Cook if, even though it was an "Honorary degree could I actually use the "Dr. in front of my name. He responded that technically yes but only an "asshole" would actually do it.
.....Now back to what John Hausdorff was finding on his computer screen. It seems that my PSA has fallen to 0.86 and my CEA went down to 11.4 but the best news was the CT scan results. "All nodules both in the lymph nodes and in the lungs had markedly diminished and in most cases scare tissue was the only sign that they had ever existed. John saying the results could not be better.
.....So we are going to take me off chemoTHERAPY for six weeks and see what the results will be at our next appointment on 11/16/06. With an incurable disease these kind of days don't come along all to often.
.....And just in time too. My fingernails are in bad shape from the Taxotere. I'm losing both Thumb nails. Also Taxotere has a tendency to plug up the tear ducts and I have been struggling with this. "Helpline Harry" advised me to use two over the counter drugs "Systane" during the day and at night "GenTeal gel. In 24 hours it began to relieve the problem. I called him last night and told him the good news and he told me to continue to use the drops and gel for the next two weeks.
Well, let's all enjoy this "Latest Update" while we can!

---

November 16, 2006

............Well, this is going to be short and sweet!   Saw Dr. Hausdorff this morning and my CEA number was flat at 11.4 so we have the neuroendocrine disease well under control considering that the number was once 898.8. But my PSA did go up from 0.86 to 3.64. That is more than doubling in 6 weeks and I’ve been on this road long enough to be able to read the road signs.
............My next labs are set for December 18th, Then somewhere in the first week of January I’ll have another CT scan. I have spent nearly eight years with this damn disease and I refuse to panic and am thankful that Dr. John is giving me the hollydaze without treatment. In fact I will be free from treatment for the next eight weeks. Then on January 8th we will review the PSA & CEA numbers and see what the CT scan tells us about the known mets in my lungs and lymph nodes.  We know that Taxotere works very well for me so this only means I will have to go back to it sooner than I would like.  But what the hell, I plan to savor my upcoming eight-week vacation.
...........I have always been partial to jugglers who play with fire.  So I'm planning a 5-day tour in North Dakota in April so that I will be able to say that I have done at least one poetry program in all 50 states, all the provinces of Canada, and in England and Wales. And don't think that I haven't got my eye on Scotland, Ireland and Australia.  You may have a beardless poet with no fingernails to put up with for a while, but know that at the moment I feel great!  No pain anywhere.  No fatigue to contend with either, so I plan to simply enjoy my time away from chemoTHERAPY!!!!
 
...........See you next year!!!

.