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MEDICAL ISSUES: Becoming Hormone Refractory.- Oncologist - PCRI, Online Support - Vegan Diet - PC SPES - Bone Pain - Aredia... MUSINGS: Open letter to Prostate Cancer Research Institute - ON Being "Terminal" - Alternative Medications... POEMS: Endline - PC as a Sporting Event - PC SPES - Support Groups - Prejudice - Iron Socks - Poor Devil!

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This letter was written January 24, 2000
Dr. Stephen Strum, MD
Prostate Cancer Research Institute
5777 W. Century Boulevard, Suite 885
Los Angeles, CA 90045
http://www.prostate-cancer.org

To Dr. Strum or whom ever else may be concerned at PCRI,

— This will be a bit of a long letter to explain the enclosed check for $303.37.
The figure being the best deal I could find on the Monterey Peninsula for my monthly supply of Casodex. Which I have recently been taken off of. This amount being the local Costco price. The drug has been doing the job for ten months since my bilateral orchectomy but my last PSA rose in three months from 0.2 to 6. Upon discovering this my urologist moved me on to a local oncologist with the comment “I’ve done all that I can do for you.” Unfortunately, or as it turns out, perhaps fortunately, I had a two week wait before I would meet and have my first appointment with said oncologist. I had to have another bone scan to compare with the one taken just before the operation. And as I’m sure you know, in my situation, a two week wait can seem endless.
— I’ll back up in the story some here. About 10 months ago a friend, doctor, and also a prostate cancer survivor, Dr. William Wenner (now living in Hawaii) started bugging me to go to your web-site and get involved with your group. He even offered to help pay my way to your last conference as his guest. But I wasn’t ready yet. There has always been too much of the ostrich in me. No doubt the reason I’m in the predicament I now find myself in.
— Well, Friday Jan 14th the Monterey County Herald ran quite a good piece on me and my struggle with PC (copy enclosed) and Bill’s son sent a copy to Bill in the Islands. And here he comes again with a caring postcard, urging, no, begging me to go to your web-site. Also the mother of Jim Fulks – Founder & Facilitator of the PC Survivor’s Support Group in Fremont California, saw the article, cut it out, and sent it to her son. I got a wonderful letter from Jim urging me to join our local support group, with names and phone numbers. But I’ll come back to this later.
— So I go to your web-site and look around, still a bit resistant and full of fear and anxiety. Emotions, which for me at least, make things almost impossible to read on-line. But I saw that you also had a “helpline” with a phone number listed. So I decide to call — fully expecting a recorded message telling me to read this or that book and go to other helpful web-sites, etc., etc,.
— What I got was probably the most important hour of someone’s time that has ever been given to me. But of course on your end you all must know what a caring, helpful, patient, and wise man Harry Pinchot is. When I did finally get to meet my new doctor, I was fully armed with questions, names, information, and a printout of all of your posted newsletters. Well, Dr. John Hausdorff (a saint, as it turns out) took your news letters with avid interest. He mentioned that he was friends and consulted with a Dr. Eric Small whose practice was in SF, someone Harry had mentioned in our phone call. At that first appointment Dr. Hausdorff also gave me, my wife, and daughter an hour and a half of his undivided time. We were the ones that stood up first ready to go, not a distracted, rushed, harried Physician. Which, unfortunately was the case with my urologist. A good knife man but with the bedside manner of a burnt-out high school principal. I completely forgive him now though, as out of five options he is the one that picked Dr. Hausdorff for me.
— If possible, I would very much like Dr. Hausdorff on your newsletter mailing list. Dr. John Hausdorff, MONTEREY BAY ONCOLOGY, 261 El Dorado, Suite 202, Monterey, CA 93940 Tel: (831) 375-4105, Fax (831) 655-3056
— Now back to Jim Fulks who E-mailed me the address of a Paul Soifer the Founder and Facilitator of the Prostate Cancer Self Help Group of the Monterey Peninsula. Here is a copy of the E-mail I sent to his “welcoming me aboard” E-message...
— Paul — Thanks so much for faxing me the newsletters and for your warm personal message. Dr. Bill Wenner has been urging me to check out your group — as he calls you “a wonderful bunch of men” since I first discovered I had advanced PC. I admit, all my life I have not been a joiner. I did become a Unitarian Universalist, only because our local minister preached a wonderful sermon one Sunday about — “Think for yourself - Follow nobody’s bouncing ball - and most of all never be a joiner!” Then plaintively looked out at the leaning back, arms folded, stubborn UU congregation, of which few had signed the book pleading “but join, join join!” That morning half the congregation came forward including me, made a pledge, and signed the book. Well lately life has been preaching a pretty powerful sermon to me so there I was yesterday - join, join, joining!
— More than joining I want to be helpful. And of course I’d be delighted to be a guest speaker March 1st. Thanks for asking me. Let’s call it “Poetry as Therapy.” I’d like to share some of my work on the subject and then explore the possibility of starting a writing group that perhaps could culminate in a First Night appearance with me next New Years Eve. The ongoing piece I’m writing about my PC struggle posted at my web-site as “ The Prostate Cancer Set,” has been attracting more attention than almost anything I have written and performed before. But most of all it has been the best kind of therapy for me.
— Also I am a webmaster (love that moniker) and could perhaps help a bit in that arena too. Anyway the long and the short of it is that I plan to attend your Feb. 2nd meeting. In fact I am eagerly looking forward to it. I told Jim Fulks about this and have been asked to come to Fremont and do a program for their group on March 16th.
— One last thing — As I mentioned I have been keeping a poetic blow by blow accounting of my struggle with PC on a page at my web-site <www.ricmasten.com>. An odyssey that starts with the first Digital and goes on from there through the ups and downs, highs and lows, and yes, even the laughs I have found along the way. I have taken the liberty of posting this letter as the latest entry. It seemed to me to be a unique way to let my readers know about what’s new and how I am handling it. Of course, I have included your web-site address and a link to your entry page. This past year I have developed quite a following (mostly men) that keep coming back to follow the story as it goes along. If you would prefer that I not use this letter or any of the names I have included please tell me and I will remove them immediately. It is just that I want to tout you and your good work as much as I can.
— I know I could have just sent you the check and let it go at that, but a nasty trait of mine is that whenever I must do business with a doctor, dentist, lawyer, car mechanic, etc., at our first meeting I give them a copy of one of my books. At the second appointment I can tell whether they cracked the cover or not. And if I feel that they haven’t, then it is on to a new doctor, dentist, lawyer, car mechanic. For some reason I need to know that the people I do business with know who I am. And don’t think that I’m not aware of how unfair this is. For if the crown falls out, I die on the operating table, the case is lost, or the car breaks down in Death Valley, they feel worse than if I were some anonymous character just in off the street. I have already sent Harry a couple of my books. Even got one to Dr. Hausdorff a week before our first appointment. And yes, he had it in his hand when he entered the examination room. When the appointment was over and we were walking down the hall to the nurses station I said to him “I don’t know how you did it but I already feel that we are good friends. In fact, I have the feeling you make friends with all of your patients.”
— “That’s true.” he said.
— “How do you do it?” I asked. “In your business you must lose a lot of friends.”
“That’s also true” he answered, “but somebody has to do it.” And of course yesterday I learned that he also gives away his time as adviser to the Support Group I have just joined.
— Fortunately, since 1968 I have been able to make a living out of writing, performing, and publishing my poetry. Of course poets can’t afford things like good medical insurance. But so far Medicare has taken care of everything except the drugs which I have discovered that, the more your life depends on them the more expensive they will be. So cash this “cost of Casodex” check before February 10th, my next appointment with Dr. Hausdorff, where, after monitoring my PSA levels for three weeks, the next treatment will be decided on and other pricey drugs will be prescribed.
— Bless you all and thanks for being there PCRI! — Ric Masten

.
END LINE
Dedicated to Jim Fulks

I’ve always been
a yin / yang - life / death - up / down
clear / blur - front / back kind of guy
my own peculiar duality being
philosopher slash hypochondriac
win win characteristics
when you’ve been diagnosed
with advanced prostate cancer

finally the hypochondriac
has something real to tilt with
the philosopher arming himself
with exactly the proper petard
an anonymous statement
found in an e-mail message
beneath the signature
of a cancer survivor’s name
a perfect end line wily and wise
quote: I ask God:
"How much time do I have before I die?"
"Enough to make a difference."
God replies
+++

Feburary 10, 2000

PC SPES

in the sea that is me
the hormone blockade fails
my urologist handing me over
to a young oncologist who recently
began practicing locally having retired
from the stainless steel and white enamel
of the high tech
Stanford medical machine

in the examination room
numbly thumbing through a magazine
I wait expecting to be treated
like a link of sausage
another appointment ground out
in a fifteen minute interval
what I got
was an 18th century throw back
a hands-on horse and buggy physician
with seemingly all the time in the world

it was decided
that for the next three weeks
(between blood tests)
all treatment would cease
to determine how my PSA was behaving
this done, at the next appointment
treatment would be decided upon
and after more than an hour
of genial give and take
with every question answered
all options covered
it was I who stood up first to go
for me a most unique experience
in the annals
of the modern medicine show

however
condemned to three weeks in limbo
knowing the cancer was growing
had me going online
reaching out into cyberspace
to see what I could find
and what I found was PC SPES
a botanical herbal alternative medicine
well documented and researched
but not approved by the FDA

aware that the treatment was not one
my doctor had mentioned
(I have since learned that to do so
would make him legally vulnerable)
I decided to give it a try on my own
sending off for a ten day supply
taking the first dose as close after
the second blood test as I could

two days later
back in the doctors office I confess
expecting a slap on the wrist
instead I receive a bouquet for holding off
until after the second PSA

then taking
the PC SPES container from my hand
and like a Native American medicine man
he holds it high over his head shaking it

“Okay then,
this approach gets the first ride!”

at the receptionist desk
scheduling my next appointment
I thought about how difficult it must be
out here on the frontier
practicing medicine with your hands tied
+++

.
PREJUDICE

"All chiropractors are quacks!
Charlatans!
Manipulating pocket pickers."

Dr. J. George Taylor
physician and surgeon
exposes his daughter to a prejudice
so infectious I suspect
it became part of her DNA
and she a wannabe doctor herself
infects me her son with the notion
that if it wasn’t performed and prescribed
by a licensed M.D.
it had to be Medicine Show hoopla
and snake oil elixir
certainly today’s countless array
of potions and patent remedies
has both of them spinning in their grave

but Ma
you and Grandpa
never heard the words hormone-refractory
when it comes to me
mainstream medicine doesn’t offer much
in the way of an effective treatment

and so
with a PSA rising again to 11.9
I get my oncologist to let me try PC SPES
a Chinese herbal formula
yes. the desperate do become gullible
me reading and rereading
the promotional material
dutifully dosing myself between blood tests
and this
against the smirk of disapproval
mother and grandfather
wagging their heads in unison:

"It won’t work."
"It won’t work."

having condemned myself
beforehand
the moment of truth arrives
pacing the floor I wait for judgment
the doctor appears at the door
calling out:
"How does it feel to be a man
with a PSA falling to 4.8?"

it seems
that for the time being at least
the tiger is content to play a waiting game
which is great!
Mother
tell Grandpa I just may escape
our family bigotry
before it’s too late
+++

.
IRON SOCKS

time now
for a bit of reverse prejudice

I once purchased some stockings
called "Iron Socks"
guaranteed to last for five years
they lasted ten!
the clerk had never heard of them

as a cancer survivor… so far
in an over populated world
I consider the multi-billion dollar
medical and pharmaceutical industries
realizing
that there is absolutely no incentive
to come up with a permanent cure
+++

"POOR DEVIL"

in my early twenties
I went along with Dylan Thomas
boasting that I wanted to go out
not gently but raging
shaking my fist
staring death down

however this daring statement
was somewhat revised
when in my forties I realized
that death does the staring
I do the down

so I began hoping
it would happen to me
like it happened to the sentry
in all those John Wayne
Fort Apache movies
found dead in the morning
face down — an arrow in the back

"Poor devil."
"Never knew what hit him."

at the time I liked that...
the end taking me
completely by surprise
the bravado left in the hands
of a hard drinking Welshman
still wet behind the ears

older and wiser now
over seventy
and with a terminal disease
the only thing right about
what the Sergeant said
was the "Poor devil" part

"Poor devil"
never used an opening
to tell loved ones he loved them
never seized the opportunity
to give praise for the sun rise
or drink in a sunset
moment after moment
passing him by
while he marched through his life
staring straight ahead
believing in tomorrow
"Poor devil!"

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

June 30, 2000

— I just arrived home from my 6 week checkup visit with John Hausdorff my young oncologist. He's probably in his forties but any one under 70 looks young to me. I was glad to hear my PSA is drifting and in the right direction, now down to 1.42. This from 2.31 in six weeks. The number is even more encouraging as I’ve recently learned that stress and infection play a part in how effective the PC SPES treatment is. During this last six week period I have had a lot of travel stress (two Eastern tours) and also discovered a problem tooth that has been fostering a low grade infection for the entire time I have been on PC SPES. Had it pulled last Monday. Getting that cleared up as well as now having a little time for RR can't hurt.
— I am scheduled to start RT (spot-welding) on the place in my groin which hurts when I walk and exercise, this on July 10th. Dr.Hausdorff is concerned that I have quit walking and exercising. Danger of osteoporosis. Doesn't like the idea of me lying fallow. Talked to him about Fosamax and Aredia. Of the two he thought Aredia would be the better treatment but it's expensive and it seems that Medicare won't cover it. Money is a real consideration for me and the radiation is covered. John mentioned that he was not a great fan of RT but that in my case he thought there was about a 75% chance of reducing the pain while the PC SPES does it’s job. (He seems to have really done his homework on PC SPES since I began using it under his supervision) He prescribed Vioxx (also expensive - but just a trial run of 7 caps). If it happens to handle the pain he will prescribe more and perhaps we can call off the radiation for now. He felt that the walking wouldn't make the cancer mets worse - although it might kick up the pain a bit. I'm starting the Vioxx tomorrow morning. Got my fingers crossed.
— The thing that pleased me the most about my meeting with Dr. Hausdorff was this. I asked him how he would feel about consulting with Dr. Stephen Strum, if I become PC SPES refractory and have to move on from PC SPES to other treatments. He said he would welcome it. "I'm just your navigator. You’re the Captain, Ric! I like to consult with others, especially PCa specialists, it stretches me and I always learn something new." As for me I like the feeling of having my future ducks all lined up and in a row.
— Next PSA test July 28th. Next Doctor appointment August 3rd.

.
July 17, 2000

— Thanks to some advise from PCRI's "Helpline Harry" (Harry Pinchot) and a p2p (patient to physician) response from PCRI's Dr. Stephen Strum. Dr. Hausdorff and I have put off RT (Radiation Treatment) for the time being and started an Aredia regime this morning at 10:30. Took two hours, every three weeks for awhile. Got the proper Medicare codes from Alice at the PCRI office and faxed them to Dr. Hausdorff. What was nice, at the Metastatic PC Support Group last Wednesday night, the subgroup Dr. Hausdorff advises - John told about me going out and finding PC SPES on my own and then when he told me that he thought Aredia wasn't covered by Medicare — "Once again Ric goes online, finds out all about Aredia and Medicare and proved me wrong." Not too many docs would publicly admit that one of their helpless patients is helping himself and his local doctor's "information bank" to the extent that I have been doing. Super nice young man - Doctor John Hausdorff and only a kid of 43!
— To this crusty old PC survivor friend of mine, I was praising the three doctors that give up their own personal time to advise our local PC groups (Dr. Shaheen, Dr. Hausdorff & Dr. Tamler). "Yeah", he said, "They are all young, under 45. Come back in 10 years and let's see if they are still giving their time away so generously." I guess some folks are born cantankerous and unpleasable

.
August 3, 2000

— Well, at today's 6 week appointment with oncologist Dr. Hausdorff the PSA news wasn't what I'd been hoping for. In the last six weeks the number took a little blip up – from 1.42 up to 2.01, not a big jump but edging in the wrong direction. We decided to up the PC SPES dose from 9/day up to 13/day. I'm told that PC SPES is very dose sensitive so I'm adding three more caps to the daily total. Also I had an infected tooth pulled during this last six week period which, I'm told, could also affect the job PC SPES is doing. Keeping my fingers crossed, hoping that this adjustment will turn things around again. Everything else remaining the same. An infusion of Aredia every three weeks to build up the bones, and hopefully knock down the groin/hip pain a bit. The Vioxx is still helping but in the late afternoon the pain is about 2 on a scale of 10. One 5-500mg Vicodin seems to take care of it till bed time. The pain is no big deal, but enough to be a constant nagging reminder of the problem I'm dealing with

.
September 14, 2000

— PSA not soaring, but it is creeping up. This is probably an indication that I am becoming PC SPES refractory. But Hausdorff wants me to continue what I'm doing till the next 6 week appointment on 11/2/00. Than we will talk strategy. The funny thing is the pain is almost entirely gone now. I haven't felt this good since last December, I'm sure this is due to the Aredia infusion every 3 week. For the next month or so I will be keeping my eye on the internet and talking to my PCa survivor friends to get an idea what might be the best thing to try next. Hausdorff pointed out that 8 months have gone by since I started using PC SPES with a PSA of 11.08. So I'm not even half way back to where I was last February. These ups and downs are the nature of the beast, I guess.
— On another front -- the financial one, things have not been going so well. The drug Casodex, $340.00 a month isn't covered by Medicare and of course PC SPES is not FDA approved. So the rainy day savings are draining away quite rapidly. And they tell me to avoid stress!
— Enter my friend Ron Cook and others, who recently involved Barbara March of the Carmel Publishing Company. The rascals have talked me into bringing out a special "limited edition" of my Words & One-liners. A fancy hardcover deal, in a box with some hand work by me - costing $100 for "limited edition" copies, also an accompanying cheaper softcover edition for general public consumption. They are already compiling a list of people who want a copy of the "limited edition" and the length of the list is surprisingly long -- causing me to constantly tear up. My W&O have been in the newspaper and online, but never before published in a book. Twelve volumes of poetry have been published since 1972, but not with my artwork. Money to underwrite the project has already been raised by a group of generous well healed friends. The same people who have offered to pay for my PC SPES up front. But for some reason I couldn't allow that, stupid pride I suppose, but the book deal feels different than excepting flat out charity. So now, I am up to my ears doing the grunt work, trying to put together 80 Words & One-liners that I feel are good enough for publication. Keeping busy and occupied with something I enjoy is just what the doctor ordered.

.November 6, 2000

— I'm having a whole battery of blood test work done to take with me when I go south this month. I'll be speaking before a number of Prostate Cancer Support Groups in the Los Angeles area -- arriving there Tuesday, November 14th and coming home Monday, November 20th. One night I'll be staying over with my friend Harry Pinchot (Helpline Harry) and I will listen closely to what he thinks I should try next. Harry is a long time PCa survivor and is as savvy as anyone I have ever met on the subject of this damned disease. Harry's helpline number at PCRI is (310) 743-2110. Call him you'll like him! On the 27th of November after all the Thanksgiving trimmings are behind me I will meet again with Dr. Hausdorff, November 27th and the next plan of action will be decided upon. But with PCRI's Dr. Stephen Strum and Harry's input as added arrows in my quiver.

.
November 27, 2000

— This date is where the year (2000) really ended.