ROGER DID NOT RESPOND TO ANY REMINDERS AND STOPPED POSTING IN A FORUM WHERE WE HEARD FROM HIM FAIRLY REGULARLY AND ON HIS OWN SITE.
WE BELIEVE THAT HE HAS PASSED - HIS CONDITION WAS DETERIORATING WHEN WE LAST HEARD FROM HIM.
Camped in the Desert near Kingman, AZ USA
Sixty-nine years old and have been spending a lot of time in NW AZ (summer) and at the Slabs (Niland, CA) for the winter. Play a lot of music at the Slabs with a bunch of other old burned-out pro road and club musicians. Play pedal steel, lead, and bass. Pull a small travel trailer with a Ford 150 pickup. Been out west from Baltimore, MD for the last three years enjoying retirement. Free boondocking and living off the electric grid.
February 2006 PSA was 20. Like a stupid fool, I did not follow it up.
In June 2007 I ended up in the emergency room in Kingman, AZ to try and get a urinary catheter out. It was stuck. Had several in since February 06 trying to deal with a swollen prostate. BPH I believe. Tried a drug a urologist in California prescribed, uroxatrol, but each time the catheter was removed, it had to be replaced a few hours later. Prostate locked up solid and nary a drop getting past it.
The attending urologist here in Kingman came in to the ER, couldn't get the catheter all the way out and inserted one directly into my bladder, drained me, and left it in. Supra pubic I think they call it. Hospitalized my butt and set up OR surgery to remove the old one. Went well. No pain. No discomfort. No more catheter into the bladder through the prostate. The supra pubic one is still in. A lot less discomfort when sitting. Hospital staff was great and the food was really good! Believe me, I know food! I'm an old chef.
In the ER, urologist did the finger wave. Not good, he said. No surprise there. Prostate cancer and BPH runs on the male side of my family.
When he removed the old catheter, he found bladder stones and scheduled another trip to the OR for that and to do a prostate biopsy. He paroled me from the hospital for the weekend and scheduled the bladder stones and biopsy for outpatient but under general anesthesia. Came through that OK. Stones pulverized and gone. Week or so later I got the result of the biopsy.
Pathologist's report: High Grade Adenocarcinoma. Gleason Score (4+5) = 9.
Got a nice little urinary infection from the use of a catheter so much. Got a full-body bone scan and CAT scan, with and without contrast, early July to try and stage the cancer. New PSA, too.
Gotta say one thing about the doc. He has about 30 years at this, and lays it on the line. No BS or holding back possible adverse outcomes. Most of them I already knew about, in general. Did a lot of net research before I got the scan and PSA reports. Now I know a lot more. More than I ever really wanted to know. I am one of those dudes who is a full participant in his medical treatment. Listen carefully to the doc, ask plenty of questions, but also head for the Net and get more info. Surprised me that the doc is so knowledgeable and covered everything I needed to know. On line stuff went into greater detail.
19 July 07, got the results of the scans and PSA.
Doomsday? Certainly that day a ton of reality dropped squarely on my head from about 50 feet. Or did it just feel that way?
Waltzed into the urologist's office, neatly groomed, neatly dressed, at least for me-- shorts, T-shirt, sandals-- long hair tied back in a pony tail, beard more or less brushed down. I was there to have a catheter changed and to get the reports. Smiles all around, I climbed on the table, the catheter was replaced. Moved to a desk and I asked the doc to hand me a copy of the reports. He took his seat as I read the reports.
First report was the PSA score.
Good grief, Charlie Brown!!!
I mentally picked myself up off the floor.
That ton of reality started making a bee line for my head.
Bone scan report: Metastasized.
(Official Language in the Report) "Radiotracer activity in lower cervical, thoracic, and the lumbar spine. Increased activity identified within multiple anterior and posterior right and left ribs. Increased uptake present within the sacrum, iliac bones, pubic bones, and ischia bilaterally. Increased uptake present within the proximal femurs bilaterally."
Final statement was: "these findings are consistent with diffuse metastatic disease."
Yep, I kinda figured that out when I read the first sentence in the report summary.
CAT scan report:
After a statement of the various non-cancer related items found, old asbestos exposure, no evidence of other serious problems, the report concluded:
"There is CT evidence of Metastatic disease to the thoracic spine, lumbar spine, pelvis, and the proximal femurs."
That's when the ton of reality fully hit me!
The doc had a patient in another room waking up from some procedure and excused himself for a few minutes. I just sat there staring at the wall then reread the report conclusions hoping that somehow I read them wrong. Naw, I knew what all the words meant.
I turned around and looked at the door.
Nope! No grim reaper standing there with his scythe ready to cut off my cajones or whatever. Just to reassure myself, I felt to be sure they were still there. Yep, so far, so good.
Doc returned to the room and sat at the desk. For over an hour we talked. I had anticipated the report results and done my research, prepared a list of questions, noted various options, and went over them with the doc. First thing we had to do was to try and stop the cancer spreading.
Two options: surgical castration or drug castration.
I had no problem with the surgical option, saying (tongue in cheek) that if the doc could put in a couple of billiard balls so I would look well hung at the beach... I can just imagine myself going to Ocean City, MD and walking along the beach with them prominently emphasized, although covered up by a nice fitting bathing suit!
Not an option. Sigh....
We decided on the drug approach. Injection of Lupron every three months but first a 30 day supply of Flutamide to stop the testosterone surge or flare when he did the shot. I got the pills the following day, 20 July, and have been on them, one each, three times a day. I may be on Flutamide no longer than necessary to stop the flare since it can have some deadly side effects with long term use.
Before I got the Flutamide pills, for the prior couple of weeks or so I had some severe bone pain. Around the pelvis, left leg around the hip joint, and other areas around the spine. For a couple of days before I saw the doc to get the results of the scans and PSA, I could not put weight on my left leg without some serious pain. I had to hold onto something when I put weight on that leg.
Trying to sleep at night was a real problem with pain around the hip area. I started taking Ibuprofin 800 mg. That eased the pain later in the night but I got a real good case of constipation. Within two days of starting the Flutamide, most of my pain went away. Still a little in the butt area but that was gone in another couple of days. I stopped the Ibuprofin and a few days later the constipation went away. What a relief that was!
I got the Lupron shot. I will have extensive lab work during the treatment. I did mention to the urologist about determining spinal cord compression, anemia, etc. Doc said I need a CT spinal scan and MRI. I'll do the MRI if they have an open MRI. Ain't no way I am gonna stick my head up a long closed tube! I'll get started on blood tests, etc. I have a liver function and other tests scheduled for 20 August.
I did luck out in one way. I have Medicare part A and B but was able to get a state medical card and QMB benefits that cover the part B premium, deductible, and co-pay on both parts. My little social security check will not be touched. Big sigh of relief. $400 does not go that far these days, even though I park free, off the electrical grid. Right now I have a free full hook up for the summer: electric, water, sewer, courtesy of an excellent friend. The QMB benefit frees up the part B premium, ninety some bucks a month, to help out with gas for the rig to Baltimore.
Will the treatment work? Good question.
Right now I must stop the spread of the cancer. The drugs are supposed to do that. If I can't get the growth stopped, any other treatments down the road ain't worth diddly squat. Once I leave the Slabs around the end of April 2008 and return to be with family in Baltimore, I will get set up at Johns Hopkins and assess what can be done further.
That's about it for now.
If the drug works, I'll let you know.
If it don't... I don't think they have invented a way to access the Internet from six feet under.
July 2007: Lupron, 30 mg, 16 week shot, 30 July 07. After two weeks taking Flutamide, 125 mg, 3 X day.
Mid-September 2007: Stopped Flutamide. Severe diarrhea with no warning, badly swollen feet, and reddish-brown urine. Was advised by pharmacist that if that occurred to immediately discontinue drug and follow up with urologist. Once Flutamide discontinued, severe runs and other side effects ceased.
Still may have a runny bowel discharge about every two to three days, with warning. There is occasional solid feces bowel movement during that period. Discharge is about the same amount as a normal movement. Episodes usually occur at night, say 8 PM to Midnight, or early in morning, 5-7 AM. On occasion I will have a couple of short runs. After the first run, I usually take 2 each, 2 mg Loperamide HCl caplets. If a second run, I take one of the caplets. So far, post-Flutamide, I have not had a third run after the first two. I have learned to live with a Depend's brief/diaper.
30 Aug 2007: Fasting. Liver function test and glucose test. Alkaline Phosphatse high. 285. Normal 25-160. Glucose high: 124. Normal: 65-99. Done in Kingman, AZ
15 Oct 2007. Fasting. Lab workup. PSA 59. Liver, kidney, CBC, etc., mostly normal. Elevated glucose and some others either low or high. Alkaline Phosphatase high, 386. Normal 39- 160. Glucose high: 129. Normal 65-99. Done in Chloride, AZ
Before I began Flutamide, and before the treatment starting in June, for the stuck catheter, I had a lot of bone pain in the pelvis area, lower rib area, and hip joints. Left leg was most affected. Not knowing about the cancer, I tried to get rid of the pain with Ibuprofin 800 mg, usually in the afternoon and before bedtime. Later in the night the pain would recede and I could sleep until morning. Within a few days of starting Flutamide, most all the pain was gone, and shortly thereafter all pain was gone. Shortly after I discontinued Flutamide, the pain started to return and has gotten back to about the level it was before Flutamide. Once again I am using Ibuprofin on the same schedule and the same dosage. The left leg and hip joint are the most difficult pain to control. I take an Ibu around 6PM, I am usually in bed around 7PM, and many times it will be about midnight before the pain is controlled enough to sleep.
Early November I noticed a popping or rubbing sound that feels like it is in the sternum area and perhaps movement of one or more of the ribs. This is most noticeable at night when it is quiet in my camp. I am able to sleep later at night so do not know if that popping continues or not.
Current Medications and Over the Counter Items
Lupron, 30 mg, 16 week shot, 30 July 07. Next shot due around end of November 07.
Flutamide, 125 mg, 3 times a day. As of 16 November, off of the drug. May have to restart long enough before Lupron shot to stop surge. Will then go off of it and replace with Casodex.
Artemisinin. This is a simple dietary supplement in the U.S. It has shown some promise in other countries to have an effect upon cancer cells yet not harm normal cells. It is routinely used in many areas with drug-resistant malaria as a first-line drug and to successfully treat cancer. My current dosage is 2 each 100 mg capsules each morning upon arising and before any food. Taken with whole milk and cottage cheese.
Ibuprofin. 800 mg. Taken as needed for severe bone pain. I try to take this no more than necessary.
I am scheduled to see a urologist in Brawley, CA around 27 November.
Medical Items Needed
Lupron shot around end of November.
Replace Flutamide with perhaps Casodex, prior to Lupron shot to try and stop surge.
Prostate is still blocking urine flow. Need to discuss if anything further can be done, short of surgery, to shrink prostate to be able to remove supra-pubic catheter and do a course of drugs to kill the infection.
Discuss possibility of doing a triple blockade with finasteride.
Bone and CT scans.
PSA and other lab tests as the doctor feels necessary.
Spinal cord compression test, possible.
Information about any other treatments that might be beneficial to me in the war I am waging on cancer.
My Visit with a Urologist On Tuesday, 27 November 2007
Living as I do, an old homeless dude in a ratty, run down old travel trailer pulled with an old pickup, I have learned to adapt to my conditions as well as I can and grab any good opportunities when they present themselves. I have learned to write my plans in sand or water because I never know what is going to happen over the next hill or around the next curve. I might be expecting a nice easy slow ball and get a fast curve ball to which I better react quickly.
Before last Tuesday I had planned to go to Yuma, AZ from Niland, CA
(140 miles or so, round trip) to get all the med stuff. But it costs a lot more gas-- pushing $3.50 gallon in some places here-- so I thought I might get started on casodex and get the lupron shot here. Pulled out copies of some old 2006 bills from the urologist near here. Average, my cost, ten bucks or so for an office visit. Don't know what it will cost, my part, when I get a lupron shot here. I presented my AZ QMB notice that covers the 20% Medicare does not. Don't know if AZ will pay CA bills or not. I do know they will pay for ER visits that are real emergencies.
Got to see the original urologist I used after I first had a catheter inserted in an ER in Brawley, CA, February 2006, where they drained 2
1/2 liters of urine out of me. Hadn't swollen up quite enough to shave my beard, and put on a maternity dress, but I was right puffed out around the gut. I learned the right way to spell RELIEF in the ER-- PEE!
Tuesday I went to the urologist's office in Brawley, CA – about 22 miles from the Slabs-- with a written history since February 2006. Attached all lab reports, scan reports, and all of the hospital ER and OR reports from Kingman, AZ I had with me. Made a copy for him.
He made his written notes, looked over the chronological progression then read the medical items needed. Got a couple of them: Casodex 50 mg, 30 pills, take one at bedtime, with 5 additional refills. Take for three weeks before Lupron 16 week shot then continue thereafter. Shot scheduled in his office, 18 Dec 07. Got a referral to a medical oncologist a few miles further south from his office. I was unaware there is one nearby and thought I would have to go to Yuma, AZ for one. Will see the med onc before the Lupron shot. The urologist's office visit was very fast, rushed, and probably did not last 30-45 minutes. Oh, how I long for my urologist in Kingman, AZ. Took the time that was needed to be thorough. Big sigh... He is 250+ miles from here.
When I took my 30 day casodex prescription to the Rite Aid in Brawley and got it filled, the pharmacy put the cost of it on the package insert as well as my cost. I have the Part D Medicare drug card with low-income person coverage. Drug cost me $3.10. Without the card, $545.99!!! It ain't fun a lot of the time being a low-income person but I am sure glad for the Part D card.
The rest of the story: Other Medical Items Needed
1. Change catheter. Due for replacement. (He asked if it was draining OK—yep-- and said he would not do it that day.)
Summer of 2006, I tried to get some Foley catheters from the one place in Kingman, AZ that had them, and intermittent catheters. Got the intermittent ones but the pharmacist said he would need something from a urologist for the Foley's. Have had Foley's inserted so many times, I know exactly how to do it. I was lucky I had three back-up intermittent catheters, Xylocaine, and non-petroleum jelly, when a balloon burst on a Foley and pulled out of the bladder one day in late September 2007. Soon as I saw it, no sweat. Reached into the cabinet, pulled out an intermittent, greased it up, properly inserted it, taped it off and leisurely drove to the ER, about 15 miles away. No need for Xylocaine. Not concerned, scared, or rushed. Just dealt with it.
2. Prostate is still blocking urine flow. Need to discuss if anything further can be done, short of surgery, radiation, or systemic chemo, to shrink prostate to be able to remove supra-pubic catheter and do a course of drugs to kill the infection. (No response.)
3. Discuss possibility of doing a triple blockade with finasteride or other suitable drug without serious side-effects. (He disagreed and said proscar, etc, were good only for BPH.)
4. Determine cause of bone rubbing or popping sound in chest.
(Ignored, but that may be dealt with by medical oncologist that he recommended.)
5. Deal with (as may be possible)
Elevated glucose Other high and low values in October 07 lab report (No response on either. Will get up with a doctor who treats high and low values and elevated glucose.)
The family doctor I saw in Quartzsite, AZ did discuss some things I had to do diet-wise to deal with the elevated glucose level. I have an visiting RN friend parked next to me at the Slabs and today she went over some of the ways to deal with the problem. She mentioned a bunch of diet no-no's. Good Grief, Charlie Brown!! They are some of my favorite foods! OK! A man's gotta do what a man's gotta do.
6. Bone and CT scans. (Referred to take up with medical oncologist. I have no problem with that. His office is in a building where they have scanning machines.)
7. PSA and other lab tests as the doctor feels necessary. Last PSA test, October 2007, done with Roche Elecsys method. May need to do re-baseline test if another assay method or kit is used locally. (No response)
8. Spinal cord compression test, if needed, perhaps done at time other scans are done. (He said something about total weakness other than what I am experiencing from the drugs. I did not quite understand. Will take that up with the medical oncologist.)
9. Testosterone level.(No response.)
10. Bone density.(Medical oncologist.)
11. Information about any other treatments that might be beneficial to me in the war I am waging on cancer. (Mentioned possible radiation of some kind.)
That is definitely out as long as I am camped in the desert. I am going to stick with the drugs as long as they bring my PSA down. I know there are several other things I need to do. Main thing I am concerned with is getting the spread stopped. If some cancer cells are killed off, fine. If I don't get it stopped, any other stuff down the road ain't gonna be worth diddly-squat.
This will be my last year on the road. I head back to Baltimore around end of April after 16 week lupron shot, to live in a stick and brick house with my sister, and have Johns Hopkins nearby.
That decision is written in hardened concrete.
Had my fill of 110+ degree summers under a hot sun with no air conditioning. The option of putting a nice thick tarp over the trailer would not work. The desert winds would rip it off in no time. Shade trees are right few and far between unless I climbed real high to an altitude my pickup will not reach. Tried it summer of 2006. Got 5 miles up an 11 mile 6% climb. Overheated a couple of times and tranny went nuts rapidly shifting from 2nd to 1st. Turned around and returned to a valley where Camp Verde, AZ was located. 110+, sweat poured, got a 30 pack of Milwaukee's Best beer, iced it down, proceeded to get high. Did nothing for the sweating nor did it decrease the outside temperature.
Always upbeat, optimistic, deal with the pain as best I can with Ibuprofen 800 mg when I really need a pill. Stopping the beer and wine was a really smart move. As the days pass since I last had any booze the most annoying thing-- the trots-- has not came back. Pretty soon I might be able to take off the Depend's. I'll drink to that-- with root beer!
My life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting..."Some Beach...what a ride!"
Chef Roger Woods
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