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January 1, 2005

.....We began Year Seven this way —
Prepared to go in to see Dr. Hausdorff on Tuesday morning, 12/28/04 and find out how the lab numbers came in and perhaps plan future strategy, I received a call Monday afternoon from Monterey Bay Oncology asking me if I was OK. I told Karin, one of the office folk, that I was fine and that I would be there in the morning. She told me that my appointment was on Monday morning not Tuesday, she also went on to say that Dr. Hausdorff was all jammed up and wouldn’t be able to see me for a couple of weeks. I almost fainted from chagrin (first time I've done this) and the truth be told -- anxiety.
.....Have I become so blasé about my condition that I am now missing appointments? The thought coming along parallel with PSA dread “What if the numbers are running rampant and out of control?”
.....In my defense a huge Pacific storm had rolled in Sunday night and took out the electricity so on Monday morning, instead of checking the calendar I was out in the yard running around hooking up our generator and battening down the hatches.
.....But to the point of this. Monterey Bay Oncology consists of four oncology MDs, five or six oncology nurses (four always on duty), a lab and large office staff. Quite an operation and excellently run. The nurses, over the six years that I have been going in to this medical establishment have become close friends. Teaching me valuable things like “A watched plastic bag never empties!” I call the place the HOUSE OF DRIPS

.....Recently they put Nora Walsh, one of the above oncology nurses in charge of Palliative care. Someone you can call anytime to get advice and information without the patient bugging the doctors. Nora, a “sure and be gory” Irish lass from the Emerald Isle keeps track of us all and how we, the patients are doing and how well we are handling our treatments. etc. Nora was one of the nurses that stuck me with needles back when I was on weekly chemo but now in her new position enjoys just needling me every time I come in for a Zomeda drip, lab work and Dr. appointments. A dear friend developed over the years.
.....I have never had the opportunity to use Palliative assistance before but on Tuesday I went into Monterey Bay Oncology and told Nora that I had missed my appointment and asked for help. She immediately got my lab results set up the next cycle of appointments and even got Dr. Hausdorff to appear for a moment to tell me the numbers were fine and he would see me in six weeks. This really was a FIRST, as all of the doctors never ever glance into the waiting room for fear of a hysterical patient catching their eye. What a good deal! If any of you out there are going to an Oncology Group I would certainly suggest that they appoint someone to do Palliative Care.
.....Oh, the results of the blood tests? PSA 1.45 up a tad from 1.28 and surprisingly the CEA was down from 23.9 to 19.3, The PAP was flat. So we begin year seven with clear sailing ahead for at least the next six weeks!

***I brought this over from my January 1st weekly WORDS & ONE-LINER posting.

.....On this, the first day of my seventh year out from being diagnosed with advanced incurable prostate cancer I wanted to kick the year off with something I have written on the subject. The first incident that helped choose which poem I would use this week happened on 12/28/04 when I saw the sad news about Jerry Orbach of Law & Order fame (a favorite show of mine) dying of prostate cancer only a month or so after it was announced that he was retiring from the show to undergo treatment, “How tragic”, I thought, “almost no time between diagnosis and death!” However, a day later, the Halifax News Live reported that: "Orbach was diagnosed with prostate cancer more than ten years ago.” So it turns out that Jerry did have a good long rewarding run after diagnosis. As an actor he was able to say that he "Worked himself to death doing what he loved." and may I be as lucky!
.....The Orbach obituary was released on the very afternoon of my most recent appointment with Dr. Hausdorff, my oncologist. See Prostate Cancer Odyssey “Latest Update” Link above and on the left.
.....Under all these circumstances it is impossible not to ask “Why Jerry Orbach and not me?” My mind flying back six years to the day I got the Big “C” bad news. It so happened that the Monterey Peninsula Herald was working up an article on me. The journalist having already done the interview called to clear up a few fine points the day after I got the shocking biopsy and bone scan results. And being who I am, I, of course, told the interviewer about it and not unexpectedly it became the focal point of the article.
.....Three days after it was published I got my very first E-mail from a PC survivor who saw the article and wrote me offering information and assistance. A kind and generous man named Jim Fulks. Sadly he also succumbed to this damn disease a few years later. All of this seems like a lifetime ago and I guess it was.
.....What struck me most was the endline phrase Jim used under his name. I e-mailed back and asked if he would give me permission to write a poem around the striking statement. He said he found it under the signature of another PC survivors name and also tried to find out who first wrote the line. No one seems to know so I went ahead and wrote the poem anyway and dedicated it to Jim. This, and the news about Jerry Orbach prompted me to post today's (1/1/'05) offering.

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January 30, 2005

.....For those readers only interested in my numbers, they still look good 01/17/05 - PSA 1.77, CEA 21.4 PAP 1.4 Climbing ever so slightly. I return home from touring the East on Sunday, March 13 and later that week I will be getting another MRI, bone scan and complete panel of blood work. Not because something suggest that we do this but because my local oncologist just wants to stay ahead of the curve. And I'm for this.
.....This message came in the morning E-mail. Notes like this come along quite often. I always respond. To get a sense of this kind of interaction — first my fellow PCa survivors message to me followed by my response which also sort of summarizes my case study.

.....Started zometa and will start taxotere in 4 weeks, just played golf in Dec. 8. nerve bundle and sciatica, killer pain down legs. just got off radiation for 13 treatments. constipation with oxycotin has been a chase. I have a pharmacy background so I kinda know what is going on. Have good spirits. Just right now, tired from radiation, constipation. Trying to get strength back. So we just go from today. Hope today is a good day. Not looking forward to taxotere but everyone is different during therapy. The person upstairs has the plan. Right now I'm going to do a room lap walk for golf in the summer. Would be neat if you would reply, you have been a help.? — Lance

.....Lance — First, the bad news — Sounds like I've walked a mile in your shoes. For over four years monthly drips of Aredia and now Zomeda. Did weekly Taxotere 25mg/M2, Decadron 11mg for 16 months with a couple of short vacations. Then came conformal RT 3DRT Dose: 50.4 gy Ports: AP/PA/LAO/RPO for 5 1/2 weeks. It did well knocking out the big bone met in my groin but the treatment also took out my femur head and I had to have a hip replacement a year later. Of course, because of the femur deterioration my sciatic went crazy and I too got on Oxycontin 40mg per day for the pain. I gobbled stool softeners which did help with the constipation also watched what I ate) Got hooked on Oxy and had a hell of a time getting off the stuff when I no longer needed it.
.....The big thing to watch out for is steroid consumption. I was taking a weekly dose of 11mg of Decadron to counteract chemo symptoms and at the same time, because of sciatic pain I underwent 3 epidurals of 80 mg of steroids to no avail until an X-ray showed that the femur head was almost gone causing my spine to twist thus the sciatic pain. The Radiation oncologist blamed it on the steroids and the medical oncologist thought it was because of the radiation. I think they are both right to some extent and both docs are doing their very best trying to help me.
.....Now the good news — There is light at the end of this tunnel. I have been having a vacation from Taxotere for a year now. I did handle it well — a little nausea there at the beginning and some peripheral neuropathy that has left the end of my toes numb. To avoid PN put your feet in ice water during the drip. I wish I'd known this when I was on weekly Taxotere I would still have feeling in the tips of my toes. The hip replacement has me walking upright with out a walker. Sciatic pain — gone. I don't think I could do a round of golf at Pebble Beach but I could walk at least half the course using a cane. I have a two and a half week tour doing "poetry readings" and speaking to PC Support Groups in NY, NJ & PA from the 23rd of Feb., heading home on the 13th of March. Something I couldn't even have imagined myself doing a year and a half ago.
.....However, I do reiterate, watch your intake of steroids. As "Roid Rage" ain't no fun (suicidal depression) and I had to go to the Garden Pavilion (name for our local loony bin) to get my chemistry straightened out. Celexa 20mg/d did the job nicely in about a month.
.....Hope there is something here that you can use Lance. Do keep in touch — Ric Masten...

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March 26, 2005

.....After my six month CT and bone scan, as well as new blood markers taken, I was delighted to learn that I'm still on vacation. The bone scan was exactly like the last one six months ago. The CT was clean except for three tiny polyps - two at the top and on the outside of my left lung and one in the same spot on the right lung. That is right and left looking out from inside me from an outsider's point of view reverse right and left. I never know which is really right. :o) Anyway, we will be keeping our eye on these new comers but for now the honeymoon is still on.
.....Blood numbers done 03/10/05 revealed a PSA of 2.32, a CEA of 23.6 and a PAP 1.2 — the CEA and PAP were unchanged but the PSA is still creeping up a bit. On July 25, 2002 my PSA was at it's lowest at 0.3 and it has taken over two years to climb to 2.32. So I will continue to go in for my six week blood tests followed a week later by an appointment with Dr. John.
.....Meanwhile, during this lull in treatment I am making hay while the sun shines. I'm more creative than I have been in years. Presently, I'm putting a new Prostate Cancer Odyssey CD together using the material I will be presenting at PCRI's National PC Conference in Washington DC this coming June. Also I am being filmed in a short subject built around my OPPORTUNITY OF A LIFETIME poem —

.....I will also be coming out with new book, "WORDS & ONE-LINERS - Take 2." And lastly Barbara Brussell, NY cabaret singer and I are just finishing a CD called FROM BIG SUR TO BROADWAY in which I recite some of my poems and she beautifully sings my old songs.

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May 2, 2005

.....Saw Doc Hausdorff yesterday (5/2/05). Always some trepidation when I see my oncologist so I had my good friend Ron Cook with me. I have learned, the hard way, to always have someone accompany me when I go to the doctor to see how it is going with my life/death issues. Preferably not a family member, as they are as emotionally involved as I am. If the news is not good it is essential to have someone there to take notes as I, at least, tend to go deaf, dumb and blind unable to recall anything the Doctor tells me. If your M.D. doesn't want someone else in the room, as some docs do, find another doctor.
.....However, I might as well have been alone this time. As always, I have an opening line memorized and rehearsed to deliver when the good doctor appears in the examination-room doorway. This time it was: ?Hi John. Ron and I are planning to go to the movies if the blood marker news is good. If the news is not good then I will go home and start to get my affairs in order, preparing for death."
.....John kicked his foot high in the air and shouted: ?Enjoy the movies!? My PSA had actually come down from 2.32 to 1.84, the CEA 24, essentially flat and the PAP absolutely flat at 1.02.
.....So we spent our time speculating about why I have been doing so well for over a year now, treating my PCa with nothing more than DES 3mil/d and Zomeda. At diagnosis my PSA 81 and three weeks after the bilateral orchiectomy and daily doses of Casodex: 50 mg/d, the number fell to 0.02 holding there for almost eleven months. Then suddenly the PSA began doubling every three weeks. Got up as high as 11.8. So I began PC SPES, a Chinese herbal remedy (sadly, no longer available), and I also became Vegan in my eating habits. That worked well for almost two years. Luckily, I had two friends at PCRI, Dr. Stephen Strum, a PC specialist and Harry Pinchot, a survivor who urged me to get all the blood tests not just the PSA. I did and although my PSA was a modest 2.03, my CEA turned out to be an extremely elevated 898.01 and my PAP was 22.7 with the Prolactin level at 13.
.....It turns out that my prostate cancer had mutated and become the very aggressive dedifferenchiated neuroendocrine carcinoma. So we threw everything, including the kitchen sink at it. Two years of weekly chemo (Taxotere: 25mg/M2), 3DRT radiation for five weeks. So both John and I speculate that we knocked the stuffing out of the neuroendocrine disease and so we are now back to dealing with the surviving colony of the original slow growing PC cells.
.....I tell you all this for any PC survivors who have happen to drop in on my PROSTATE CANCER ODYSSEY so that you will know that miracles (albeit short term) do happen. The main thing to guard against is allowing yourself to become an ostrich.

June 21, 2005

.....The setting was the Omni Shoreham Hotel in Washington, DC. June 17th & 18th. As an actor in a most distinguished cast of characters I played my part as best I could. This is not meant to be poetry but rather a poetic summery of two glorious days in June.

July 14, 2005

.....The numbers came in PSA 2.56, CEA 27.3, still drifting up over the last six week period.  The PSA up 0.64, the CEA up 1.3.  So what can I tell you — I still have the dirty little sucker in me an growing slowly, but I'm not going to allow myself to go paranoid and start throwing the book at it (Taxotere 25mg/M2), at least not now.  My Quality of Life is great at the moment, I'm feeling good enough to have booked two poetry tours this fall.  One in the East, October 14 – 31 and one in Southern California November 11 – 21.  To see where my adventures take me — go to my UPCOMING GIGS & TOURS page.
.....So for now we are continuing Zomeda every four weeks.  DES 3mg/d and Doctor John and I will get together again in 8 weeks September 19.  Two weeks before I will have labs again and this time the whole panel of tests - PSA, PAP, CEA, NSE, CGA & Prolactin.  We don't want to get caught off base like when I had a low PSA and a sky-high CEA.  We plan to do an MRI and bone scan after the next Doctor appointment.
.....All in all a rather boring update...."and that's the way I like it!"

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September 19, 2005

.....All the worry and gnashing of teeth leading up to my latest appointment
with my oncologist turned out to be over nothing. My eight-week visit with
Doctor John turned out to be a breeze! My numbers came in PSA 3.04, CEA
27.03, NSE 4.7, CHRA 34. Exactly the same, except that in eight weeks the
PSA drifted up 0.60. So I have a reprieve until after I’m back from my
Southern California tour that ends on the 21st of November. Once home I'll
have more blood work done, a bone scan and CAT scan.
.....The longer the honeymoon lasts the more excruciating the PSA Dread becomes leading up to the doctor appointment. There is no such thing as remission in my case. At this point in time PCa is incurable and unless something else gets me "terminal." So I think I know how folks with cancer that is in remission feel before the dreaded visit with the doctor after a panel of tests and scans.

.....I can't tell you how much writing about such things helps. I would wish
that all of you reading this odyssey would sit down and try to capture your
feelings around the different aspects of your disease. Start a journal - if
only for yourself.

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November 25, 2005

.....Of course, I have always known that the honeymoon can't go on forever.
.....The test and scan results of November 7th, 8th and 9th are in, I put off learning what they revealed until after I returned from my Southern California Poetry tour . I returned home last Monday and I went to see my medical oncoligist, Dr. Hausdorff last Tuesday 11/22/05 .
.....Blood numbers still drifting up but slowly. PSA 3.28 (up 0.72) CEA 31.8 (up 4.5) and PAP 1.2 (essentially flat) So not much news there.
.....Bone Scan results : Vague increased uptake in several of the right ribs, which is the only interval change. Other than this no change from last bone scan done 4/26/04.
.....It was the results of the CT scan compared to the last one done on 03/16/05 where we begin to find negative changes — "Impression: Interval increase in size and number of pulmonary nodules (left greater than right). These are highly suspicious for metastatic foci. Interval appearance of tiny right pleural effusion with adjacent atelectasis versus consolidation. Stable CT abdomen and pelvis when compared to 03/16/05. Stable appearance to sclerotic lesions in the right hemipelvis and left symphysis pubis."
.....In other words we now know for certain that those tiny mystery spots in the 03/16/05 CT have become large enough to confirm that they are defiantly metastatic nodules in the soft tissue of the lungs. This is a bit alarming as it is the first time, that I am aware of that the PC has hopped into the soft tissue. So "Once again it's into the breach" Time to start battling in earnest again.
.....Doc. Hausdorff and I decided to change our chemical attack and stop doing DES 3 mg/day, Warfarin 2mg and begin Nilandron 150mg/d. The real shock of this medication was that it cost $333.00 for 30 days even at Costco.
.....As always I contacted my dear friend "Helpline Harry" and talked the situation over with him. He agreed that the change to Nilantron was a good idea. He did however suggest that I get another Prostacint Scan to be sure the mets in my lung are indeed prostate cancer and not small cell lung cancer. As I have always had to watch my CEA numbers. High levels of CEA is usually a sign of lung cancer. I plan to get a Prostacint if the next 6 weeks don't show a marked improvement in the size of these tiny mets.
.....In Southern California I spoke to a wonderful PC Support group in Westlake and a fellow there had some Nilandron that he offered to the group. I immediately contacted Peter Ball and he is going to send me what he has on hand for free. At times support groups offer much more than advice and fellowship. Thanks Peter. I will now be able to do the whole six weeks for the price I paid for 30 days. After that it if we find Nilandron is effective I will fish Canada where I'm told it is offered at half the US price.
.....I am aware of some of the possible side effects of this new medication. Blurry vision is not something a guy who reads his poetry in public is happy about. The feeling of being short of breath, diarrhea and liver problems can also result from using Nilandron. Time will tell.
.....Interestingly, I find myself invigorated and excited about taking up arms and once again becoming an active cancer fighter. This last year of my PROSTATE CANCER ODYSSEY "updates" have been happilly uninteresting and dull but will now begin to heat up again in 2006.

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