Shadelands synchronicity!

For the past few months, I've been trekking out to Pleasant Hill in the East Bay suburbs to get my ayurveda treatments. The Mt. Diablo Wellness Institute there is in the middle of an old suburban office park, and I didn't relly think twice about its location. But today Liz and I were driving out there and she said, "Hey, let's visit my family's museum!" It turns out that her great-great uncle, Hiram Penniman, used to own the Shadelands ranch and orchards around the turn of the last century. The house is all that remains and is now a local museum -- the rest of the land was sold to make way for the office park! So all this time, I've been getting my treatments on Penniman family land -- nice!

Medical Details so far this year

Here's the treatments I have been working with so far this year:

ongoing: American standard
Lupron shot (every 3 months to zero out testosterone, which is the building block for prostate cancer)
Zometa IV drip (every month to whack metastases)

January - February: pancreatic enzyme treatment
This well-regarded alternative treatment is based on 1) good vegetarian and raw diet, 2) wide range of supplements, 3) big doses of pancreatic enzymes, and 4) detox. See Dr. Gonzalez's site at http://www.dr-gonzalez.com/ . this looks great on paper but -- I couldn't handle the pancreatic enzymes! They created so much toxic sludge in my system that it overwhelmed my liver and other detox organs, and I got mind-numbingly depressed. It didn't improve even with some uber-detox ideas I got from a practitioner in Idaho, and with a second try in May.

March - June
In January I saw Dr. Michael Schacter (http://www.mbschachter.com/) speak at an alternative medicine conference, and was quite impressed with his approach. I visited his offices in March and he prescribed a great and well-researched mix of supplements, vitamin C infusions, diet and exercise. (I have the spreadsheet of all the supplements I was taking, let me know if you would like it). the combination of this regimen plus daily coffee enemas (to de-toxify my system) worked fairly well. Downside -- it would have cost $3000 per month to do everything that Dr. Schacter had recommended! I also didn't want to be dependent on taking so many supplments long-term.

July - present
In July I discovered the Mt. Diablo Wellness Institute and their ayurvedic regimens. They start with a set of cleansing rituals -- "panchakarma" -- to bring your system to a baseline, and then develop an individualized regimen based on your body constitution. This regimen includes meditation, yoga, and a number of herbal supplements. I'm starting the panchakarma cleansing in a couple of weeks, which will supplement any other treatment regimen that I decide I might need.

I already feel a lot stronger on this therapy, and I am daily thankful for the change in orientation from both standard and alternative medical practices: the emphasis is on creating your health, and knowing that the body naturally wants to regain its balance. In such an environment, the cancer is unwelcome (both physically, mentally and spiritually) and decreases in course.

Because of this change in orientation, the treatment is necessarily more oriented toward the mid- to long-term than the others that I've been doing. If I need to do a short-term intervention, I'll do it but will return to ayurveda for my long-term approach.

Links to the programs at the Mt. Diablo Wellness Institute:

http://www.mdiwellness.com/panchkarma.shtml
http://www.mdiwellness.com/preshka.shtml

Life update!

Since so much has transpired since I last wrote or updated my blog, I thought it would be a good time to say hello again!

(I've put all the details of the treatments I've been taking in a separate post if you're interested. That way the narrative flows unimpeded by science!)

By late May, I knew that I had to change something drastically with my situation in Austin. My treatment regimen was running upwards of $2500 per month, and my 3-day a week job was paying much less than that. Fortunately, at just that moment, my friend Heather told me about a well-paying temp job at UC Berkeley that I could hop into if I came out quickly -- so I did! Liz was wonderfully supportive of my move, and my employers at UT were incredibly gracious about letting me leave with only one day's notice. The job at UC Berkeley has worked out great and I am still there. (Most amazingly, it also offered fabulous health benefits!) The people are nice to work with, the workload isn't stressful, and I've been pleasantly surprised to find that I can handle a normal 40-hour week. My energy is still up and down depending on the day, but I have overall been feeling great.

With the job in place, I started to piece together a life here in Berkeley. Liz came out for a month and was an unbelievable help. She found us a sublet right in downtown Berkeley with her old friends the Schneiders, and we had a great time living in their third-floor loft space. I've lived in the Bay Area for years, and Liz grew up in San Jose, so the terrain was familiar to us. We enjoyed discovering the delights of Berkeley and the East Bay, and the unmatchable diversity of California plants and flowers. After looking at several apartments, Liz and I finally signed a lease two weeks ago for a beautiful place in an old Victorian in South Berkeley. It's just a few blocks from the BART train, shopping, and the meditation ashram we go to.

My health has been pretty good for most of the time out here. Last month I had the great good fortune of discovering a Center for ayurvedic healing in the area, and am currently on a treatment regimen that I can sustain financially and will carry me through the long term. (details in the next post) Through this program I am already feeling a lot stronger and more confident.

Although my PSA had been rising somewhat, my semi-annual bone scan in July showed that my bone metastases were stable or smaller than they had been in January. The oncologist (Dr. Swift) wanted to check out a few details and did so with an x-ray this Monday. Unfortunately, it showed a large ("ping-pong ball sized") growth on top of my right femur, and several smaller spots in my mid-pelvis. Although this is troubling, Dr. Swift says I'm in no current danger of fracture and will keep an eye on things. My monthly Zometa infusions will help to keep this from growing quickly. To be honest, I had seen this coming a few weeks previously. When the bone metastases start growing, they dump a huge amount of excess calcium into my system (hypercalcemia), which I have been experiencing as really unbelievable constipation. I also "threw out my hip" for a week and found it difficult to walk -- which I now recognize as a symptom of the growth on my femur. (walking is perfectly fine now, tho -- I can still feel that "something" is going on, but it's in the background.)

Although I am hardly excited by this news, I'm maintaining a pretty even keel about it. It certainly has my attention, and I'm looking for a way to accelerate my ayurvedic treatment so that its effect will kick in sooner than planned. I also am evaluating all of my "Plan B" treatments (pancreatic enzymes, mega-supplements, and immunotherapy in Germany) to activate them at the appropriate time. I will definitely keep you all posted!

I am so grateful for all of the good wishes that you all have sent. I am also grateful beyond words for all of the amazing support from Liz -- she has been a real trouper through all of this, and has not had an easy time of it. She is back in Austin now disassembling our previous apartment, and working on paintings for her new show "Big Heads" that will be at the Bay Six Gallery in October. You can see some of her great recent work at www.lizpenniman.com, or send her words of support at lizpenniman AT yahoo dot com. I also want to send a big thank you to Heather and Michael and Philip, and everyone else who has helped us out along the way -- thank you!

lots of love and best wishes for all of your endeavors!

Tale of Two Graphs

I just got my latest PSA score, and it's 9.4. Not good at all, and it's headed in the wrong direction (it was 7.8 last month.) "Normal" scores are below 4 (some people like them to be even lower), and anything above 10 is bad, bad, bad. Astronomical scores in the hundreds like I had last year are an indication that the cancer is metastasizing and out of control.

To get some perspective on where I stand, I decided to make two graphs of my PSA. (you can click on the pictures below to enlarge them) The first graph is every PSA reading since I was first diagnosed last July -- and it shows the remarkable plunge in my PSA score since starting both my supplement therapy in August and my treatment with Dr. Thaller in September.

The 2nd graph is a close-up of every PSA reading since last August. This is the territory I need to manage, and I really want to stay below 10 on the chart.

What this tells me is that I need to make some adjustments in my treatment -- I'm not currently doing enough to battle the cancer. More on the specifics of what I have in mind in a subsequent post.

New Treatment Regimen

It took a while, but I've sifted out the new information I got at the Schacter Center, and combined it with what I want to keep from the previous enzyme therapy and other supplements.

What I'm doing: I'm still on a diet, detox and supplement therapy. My goal is to heal myself while I'm maintaining as normal a life as possible, and within our current financial constraints.

diet: a low-glycemic diet, alkalizing  with no sugar, white flour, white rice, dairy or soy.  No meat except for salmon a couple of times a week.  No coffee or alcohol.  No fruits except for berries.  Lots of vegetables in salads and  juices and wherever else I can get them.  A 14-grain raw mush (soaked in apple juice) every morning, and as much raw food as I can get.  Organic everything to avoid toxic chemicals.

detox: coffee enemas and saunas at least once each day.  Skin brushing and lots of (reverse-osmosis-filtered) water. Avoid aluminum and teflon cookware, filter on shower head, exercise and meditation every day. Monthly liver or intestinal cleanses.

supplements: a core of general vitamins and minerals, with a number of specific prostate cancer-fighting compounds (details in a separate post):

○ pancreas enzymes (as much as system will tolerate)

○ Pao V FM

○ Myomin

○ PeakImmune 4

○ ProstaSol

○ Curcumin

○ Five Mushroom extract

○ Avemar

○ modified citrus pectin

The hardest part of moving to this regimen wasn't researching and choosing the specifics (that's the fun part!)  It was finding the courage to leave behind the complete therapy package that Pamela had prescribed for me.  This was just as hard as it was to leave behind Herr Dr. Thaller's treatment regimen a few months ago.  I battle feelings that I'm doing the wrong thing, that I'm risking my life based on my layperson's knowledge, etc. etc. -- but in the final analysis, the lesson from this process has been consistent: I have to be the director of my own treatment.  I have to trust my own body, my own intuition, my own judgment -- no one else can do it for me.

Great Visit to Schacter Center

I'm just back from an excellent visit to the Schacter Center in New York.

I met Dr. Michael Schacter at the Complementary and Alternative Medicine conference this January, and I was impressed with his approach and his enthusiastic, ecumenical research into different alternative cancer treatments. I also had a chance to speak with him personally, and he not only knew about the kind of treatments I was getting in Germany, but offered some great additional suggestions that were specific to my situation.

So I went back for the whole enchilada. His staff interviewed me extensively, put me through a battery of tests, and gave me some nutritional counseling (it turns out I'm already pretty much on track with the diet I'm following for the enzyme therapy.)

The Bad News

On the second day, I had a private consultation with Dr. Schacter, and we reviewed some of the results from the tests I'd taken the previous day. My PSA was 11.4 -- yow! That's almost double the 5.8 figure that it was 3 weeks ago - and the 5.8 was more than double the 2.6 reading of the previous month. Doubling my PSA two months in a row is *not* a good situation, so I definitely need to keep on the ball with my treatments.

The Good News

That's it for the bad news -- the rest of the visit was a really wonderful education about treatments that I can fit into my own regimen. I received all of the following:

• supplement review

Fortunately it looks like I'm already taking most of what Dr. Schacter would recommend. Both he and Pamela highly recommend the ProstaSol and Avemar. I'm also going to start on Pao V FM (one of the Beljanski remedies that helped keep President Mitterand of France alive for years when he was secretly battling metastatic prostate cancer.) Also I'll be starting to take iodine and iodides -- the Japanese diet has an average dose of iodine that is 12,000 times our recommended daily dose…and they have almost no breast cancer!

I'm also going to be taking amygdalin tablets (laetrile), and I'll be checking out the supplements in Dr. Chi's Cancer Program -- Dr. Schacter is very enthusiastic about the effect of both of these supplement regimens on prostate cancer.

• treatment review

The big question for me this week was: how should I modify my treatment -- if at all?? I've been having awful depression and energy problems with Pamela's version of the enzyme therapy, and put this to Dr. Schacter for his opinion. He was marvelously impartial, and really put the decision back to me, with the assurance that everything I've already been doing is right on track. (I'll write more about the treatment choice in a later post.)

• Vitamin C infusions

This is a mainstay at the Schacter Center -- and Dr. Thaller in Germany used them too. The basic principle is that you lure in the cancer cells with glucose (they love it!), and then explode them from the inside out with megadoses of Vitamin C (they hate it!) I got infusions for four days here, and I'll be continuing them in Austin.

• Colorpuncture

This treatment uses a series of colored penlights (as well as traditional needles) on acupuncture points relevant to my condition. It piggybacks on recent developments that show how direct application of light to tumors has a healing effect. Instead of routing fiber optic tubes directly to the tumors as in those experiments, colorpuncture achieves similar results by treating the acupuncture points that correspond to the tumor area.

I also got a Heart Rate Variability test, which measures how quickly and effectively my system responds to stress. The doctor liked the result I got -- he said it shows that there's a lot of "oomph" left in my system to combat the disease. According to this test, at this point the cancer isn't anything more than an annoyance to my system -- it isn't like it's lumbering along underneath an impossible weight.

• Mind-Body Therapy

Serendipity sent me to the most interesting part of visit to the Center. While I was getting a Vitamin C infusion, I was talking about my treatment history with one of the nurses. "Oh my God," she gasped, " you haven't seen Dr. Reznik? Our mind-body guy?? Hang on, I'll see if he has any time available this afternoon!"

Dr. Reznik uses a combination of guided imagery, dreamwork, and other mental trainings to help visualize a positive outcome. I ended up taking an all-day seminar with him on Sunday, and came home with an extensive set of tools to work with -- I am noticing a marked change in my attitude already! I'll be meeting with Dr. Reznik via Skype next week and am looking forward to it!

The Shot

OK, I went into Lone Star Oncology for my 3-month Trelstar shot today.

No big deal. I drop my drawers and the nurse injects it into my bottom and I'm on my way, with only a tiny amount of residual soreness.

I will admit to being a little wistful, though. I had previously been on hormone blockage from last July until this January, when Dr. Shimkus took me off of it because my PSA was so low, down to 1.6. This was a direct result of my combined immune treatment therapy with Dr. Thaller in Germany (OR my custom supplement therapy, OR a combination of the two!)

So being back on the blockage means that things are a bit more serious again.

But it also means another 3 (and probably 6) months without testosterone. And that means no sex. No erections, no nothin', zip, nada. It took me a month to regain my sexual function after going off of the hormone blockage in January…which works out to just a couple of weeks ago. So I get a little bit of tease of what life was like before the hormone blockage therapy, and then back on the wagon.

I have to say, it isn't the sex that I miss so much, though I do. My girlfriend Liz has been fabulously, over-the-top, beyond-the-call-of-duty patient. But even though it's a big part, that is indeed just a part of what I miss.

Strangely (surprisingly!) it's my whole point of view that seems slightly off-kilter. When my testosterone kicked in again last month, I noticed I had a little bit more verve, it was more fun being out and about ("hey, look, half the world is female!")

Oh well, it wasn't like I was a *complete* glump for the last six months -- as drug therapies go, this one feels pretty tame. And the alternatives are definitely deplorable! So here I go again, wish me luck.

Dang!

I just got a call from Dr. Shimkus' office (my oncologist). I have to come in *tomorrow* for another hormone blockage shot (Trelstar) -- my PSA has gone up to 5.8.

Dang, dang, dang!

Last month it was 2.6. Dr. Shimkus said I would need to go back on the Trelstar if my PSA rose above 4.0. This is much higher than that.

Another important measure of prostate cancer is "doubling time" -- that is, how long it takes for your PSA to double. In my case my PSA *more* than doubled in just 1 month -- not a very good sign. The increased PSA is a direct indication that there's increased cancer activity in my prostate. (And especially given my recent widespread bone metastases, it might extend even further than that, although I'm fervently hoping that this isn't the case!)

In the larger scheme of things, a 5.8 PSA is still manageable -- doctors often tell their patients not to worry too much until it gets over 10. And after all, in the first couple of months that I was diagnosed, my PSA was as high as 222.

But still.

Dang.

Whew, Wow, Whoa!!

I've been on the enzyme therapy for a month now. (details in the previous post and another post, probably for tomorrow, on the day-to-day specifics.)

It certainly has meant taking a lot more responsibility for my care: instead of going for treatments once every six weeks or so, I spend several hours each day poking and dosing and feeding myself the right thing so that the therapy lopes along.

All of the research reports on the results of this therapy are excellent, and my nutrition coach, Pamela, has been fabulous in supporting me. She and I have spent a lot of time on the phone together, and she patiently answers every one of my questions about dosage and timing and procedure.

(You can feel a "But" coming, can't you??)

But holy cow -- these supplements are intense!!!

Every time I take one of the larger doses, I get completely spaced out and a little bit queasy for the next couple of hours -- I can tell that my body is spending a lot of energy to process what I'm putting into it.

That's nothing, though, compared to the depression that I've been feeling. Several times a week I am seriously hammered by intense sadness. Several times a week I find myself in tears at inconvenient moments for no particular reason. (or for some normal here's-what-life-throws-us-all reason, but I let it completely get to me and incapacitate me.) I'm a zillion miles behind on just about everything in my life, and in contacting just about everyone I should be getting in touch with. (so to all of my friends out there, hello, I haven't forgotten about you, I still love you!)

It's not the supplements in and of themselves. I've been taking over 120 supplements per day since last August, and the enzyme therapy has me on about the same amount now -- and there's a lot of overlap in the substances that I'm taking.

I've hesitated to write about the depression, because I wasn't quite sure what was happening. My dad died a couple of months ago, so of course I initially thought that I was sad about his passing. And every individual incident seems to have a perfectly reasonable proximate cause that I can pin it on. ("I can't believe that *X* did *Y*!!" etc. etc. etc.)

But what's happening is much more than that, or that, or any other one particular explanation. Something is going on here that is *intensely* depressing me, and I need to figure it out.

My initial suspicion is focused on the humongous dose of pancreatic enzymes that I'm taking every day. I asked Pamela about it and she said the depression is "normal" for patients on enzyme therapy; the body is going through an intense detoxification process, and great gobs of toxins are being thrown into my bloodstream.

OK, I suppose I find that to be a sensible explanation…but I also find it really tough to keep subjecting myself to this level of (perceived) emotional duress. I am going to keep investigating this, and try some tweaks to bring myself back into some kind of equilibrium. Any suggestions are most welcome!

A Day in the Life -- Part 1

Here's a quick outline of the procedure I go through every morning to keep things rolling for my enzyme treatment.

6:30am -- Turn on near-infrared sauna so it can warm up to 110 degrees.

Meditate for (at least) 20 minutes.

6:50am -- Take 5 chlorella tablets. Enter sauna for 20 minutes. (It's like a rotisserie -- I bake each side for 5 minutes, then rotate 90 degrees!)

7:15am -- take 2 tablespoons of post-sauna electrolytes.

Take AM supplements (20 tablets total, plus tinctures):

• aloe vera extract
• blue-green algae
• Cytozyme-THY (thymus gland extract)
• Immune System Activator (beta-glucan)
• Coriolus PSP
• 5 Mushroom Extract tincture
• Bach Flower remedy (Gentian, Rescue Remedy, Chestnut Bud, Scleranthus)
• Caprobiotics (probiotics)
• PanAlone (pancreatic enzymes)
• ProstaSol (herbal hormones -- see http://www.clearfeed.com/pfeifer/prostate-cancer.html )
• Prostabel (pao pereira + rauwolfia vomitoria extracts -- see http://www.beljanski.com/eng/beljanski.html)

7:25am -- start coffee enema (prepared the night before)

8:35am -- eat 14-grain raw cereal + fruit (prepared the night before)

9:15am -- take post-breakfast supplements (29 tablets total)

• Perque2 Life Guard (multivitamin + mineral)
• Perque Bone Guard (calcium + other minerals for bone supplementation)
• Strontium (for bones)
• gingko biloba
• Vitamin D3
• Vitamin C
• alpha lipoic acid
• Master Amino Acid Pattern
• Omega-3
• Montiff Liver Protec (silymarin + d-alpha tocopheryl succinate + quercitin)
• PanAlone (pancreatic enzymes)

…and that's it for the morning! I'm ready to head off to work for a few hours.

(procedure to be continued!)

Treatment Update

Hi everyone -- I'm still here! Things are going well -- I'm starting the second month of my pancreatic enzyme treatment, my last PSA reading was below 3, and I feel great most days.

This has been a *very* wild month -- the pancreatic enzyme treatment is turning out to be much more difficult than I thought. Parts of it are easy and parts are definitely not. In the next post I'll give a sketch of what the treatment looks like on a daily basis. (As my nutrition coach, Pamela, says: "it's a full-time job!")

I just wanted to check in and wish all of you a happy Texas Independence Day (March 2nd) Enjoy!

On the Right Track!

Good news from the oncologist today. My bone scan from a couple of weeks ago came back, and most of the bone metastases have retreated considerably! My normally reserved oncologist broke into a rare use of positive phrases: "it's remarkable -- we almost never see the metastases diminish."

Also, at the end of December my PSA had declined again, to 1.6 (*almost* normal!)

Apparently most of the time, the "standard" treatment I'm on (the hormone blockage therapy that zeroes out my testosterone) merely slows the metastases down. (Or in the best case, brings it to a halt). The bone scan instead shows that the spots have almost disappeared -- the doctor says that some of what's left is evidence of arthritis rather than cancer (I'll take that choice any day!)

This confirms what the technician said a couple of weeks ago when she printed out the film of my scan and exclaimed -- 'wow, we never see that happen!"

Apparently all the effort (and expense) that we went to to get to Germany for the treatments by Dr. Thaller have paid off handsomely -- what he did had an amazing effect! Thanks to all of you who contributed for making this possible!

Now comes the hard part, which is keeping these gains intact, and continuing to work on the cancer that remains. Today is the start of my enzyme therapy treatment, which is a *lot* more labor-intensive, but reportedly very effective! (More on that in a later post.)

The Power of Poop

OK, I am already a *complete* believer!!

I'm on my second day of doing coffee enemas, in preparation for my enzyme therapy program that starts next month. The theory is the same as that behind the do-it-yourself supplement program that I've been on for the past 4 months: the various herbal remedies, enzymes and vitamins that I'm taking are great, each in their own way, for getting the cancer and various other toxins out of my system. But someone has to move whatever's been stirred up on out of the system!

For the past few months, I've relied on my general regularity, along with an occasional colonic from Charlotte Layne. The coffee enemas really move the detoxification to another level. It's recommended by many different alternative cancer groups, including the enzyme therapy treatment ("Dr. Kelley's program") -- see http://www.sawilsons.com/ .

I can testify from my own experience that my innards have been really vile ever since I amped up my supplement use last month -- there are some seriously toxic substances being stirred up down there! I'm glad to have a procedure that will get rid of them much more efficiently.

The added bonus of the coffee enemas is one that I've read about but didn't appreciate fully until I started them yesterday. I feel *great*! This isn't just "drink your morning cup of coffee" great, and it isn't like any other caffeine experience that I've ever had. I am feeling so good overall, and I am experiencing astounding mental clarity for three or four hours after the procedure -- and all without any kind of caffeine buzz! (caveat: we'll see if it lasts!!)

Here's a link that gives you probably more information than you wanted to know about coffee enema benefits, and the actual procedure-- http://www.sawilsons.com/basicenema.htm

Christmas Blessings

For the last few weeks, there's been a bit of a cloud hanging over my head: I've been under investigation by Aetna, my insurance company.

Apparently, whenever the claims paid out for an account exceed the premiums paid in, insurance companies start an investigation to see if there's any pre-existing condition that will allow them to cancel your coverage.

Even though I didn't have any procedures that took place before I started with Aetna -- and even though the vast majority of my care has been in Germany -- I was still nervous, since my care here (various diagnostic tests and Zometa, a bone strengthener) ran to almost $10,000…and I had no idea how I was going to find that amount if Aetna canceled my policy!

We came home on Christmas Eve to find a letter from Aetna that they'd checked everything out -- and everything was OK. My policy won't be canceled!

I'm *extremely* grateful for this completely unexpected Christmas gift, and I hope that everyone out there experiences great blessings during their holiday season!

Radio Silence Ending!

I wanted to let everyone know that things are going great -- I'm feeling well and a new treatment is beginning in January.

I've been quiet for a while because my Dad has been going through a lot; we just put him into Hospice…and he was living well on his own 3 1/2 months ago!

I'll be catching up over the next few days with bits and pieces of the story until now -- a lot has been happening! I'll be cheating just a little by backdating some of the entries so that the timeline stays correct.

Hope you are all having a fabulous holiday season!

Researching the Next Step

OK, now that the last visit to the PraxisKlinik is under my belt, I can turn to the question at hand: what's the best way to continue my treatment going forward?

One option is to continue the visits to Dr. Thaller every 6 weeks or so. The three treatments I'll continue with would be the fevertherapy, the Newcastle Disease Virus injections, and the Dendritic Cell injections. (Alongside these there are the additional treatments of vitamin C and ozone infusions, and local hyperthermia).

Liz and I have 20 vials of the virus with us here in the States, so the injections with those will continue through January in any case.

A second option is to work with Dr. Pfeifer at the Aeskulap Klinik in Switzerland. He has a very interesting-sounding protocol for prostate cancer, which consists of high dosages of four different supplements. (I've already started taking one of these -- ProstaSol -- and my PSA went down by over 50% in one month! )

The third option is to go with the enzyme therapy that Dr. Gonzalez is known for. This is an intensive self-care program consisting of supplements (mainly pancreas enzymes), a strict diet, and detoxification procedures. I'm strangely drawn to this path, as it is a way that 1) I can take responsibility for controlling my own health, and 2) is something that I can maintain over the long term, as I manage this cancer as a chronic condition. (I don't imagine that there will be a sudden cure for what I have, and the costs of Thaller's treatment -- around $15,000 a visit -- make it extremely hard to envision continuing to do it over the long term!)

In any case, I'm going to be getting some help in sorting these issues out -- I'll be doing another phone consultation next week with Dr. Ralph Moss, the über-researcher that keeps his finger on the pulse of all the new cancer therapies that are being tried.

Farewell for Now

Today's the last day of this visit to the PraxisKlinik. I try the fevertherapy this morning, and there's some lower back pain (strange…), but otherwise it's very light.

I get an injection of Newcastle Disease Virus in the prostate this morning, which is always exciting and fun. ;-)

I work out the bill with Christine, and happily hand her a check for 10,000 Euros -- nearly $15,000. Thanks to all the gifts and generous help from everyone, we were able to make this visit happen. If we're able to come again in January for the next visit, it will cost a bit more, nearly 15,000 Euros.

Around noon, Dr. Thaller comes upstairs to say goodbye to all of us, as he is leaving early in the day to go to a wedding. He shakes everyone's hands, says a few words, and starts to head off for downstairs. At the last moment he turns around and heads back toward my bed at the back of the room. He folds his hands at his heart and bows slightly to me, very reverently -- and I do the same in return. I feel honored by his salutation, and almost instantly I have the strong sense that this may be the last time I see him.

So a grand thank you to Herr Dr. Thaller and Christine and Michael and Tanya -- you have all been so very wonderful!

All The Gang

Today's a more social day at the Clinic. It helps that I decide that no how no way am I going to take the fevertherapy today! A little break is in order after the wild ride yesterday.

When I arrive at the clinic, both Christine and Dr. Thaller agree -- yesterday was a little extreme! Then I discover the key ingredient that was missing: I hadn't been taking Celebrex (a pain reliever) before the fevertherapy like all the other patients. I'm not sure how I missed this, as I don't remember anyone ever telling me. I suppose it could have been one of those moments when I was being overly-agreeable and pretending to understand something in German when I really didn't. Oh well -- at least now I know the trick to surviving the fevertherapy!

So without the shivering and the fever, it's easier to catch up today with all the other people in the clinic. Sometimes I might give the impression that there's no one else around, but we're all actually quite close together -- the clinic is quite small and can only hold 8 or 9 people per day. So Liz and I are able to have nice chats with the couple from Long Island, the guy from Canada and his daughter, and the nurses, Michael, Tanya and Christine. Even Dr. Thaller comes upstairs for a few minutes.

Not much else happens today. Christine finally clears my port (which has been blocked for extracting blood, but fine for injecting things) -- she hooks me up to a machine which injects 100,000 units of urokinase over an hour's period, which seems to do the trick.

The Luffa Cure

Yesterday during my acupuncture session, Dr. Thaller heard me sniffle (I've been having some congestion lately), and started talking to me about the Luffa Cure. It's a week-long procedure that takes place at the clinic to entirely cleanse the sinuses of any bacteria or other toxins. The centerpiece of the therapy is the installation of two luffa tubes up the nostrils, which supposedly initiates a huge release of mucous -- people who take this cure go through hundreds of tissues in a week.

Tonight is the second night in a row that I have been absolutely deluged with the sniffles. I'm blowing my nose every few seconds, and sneezing, and using up tissues by the handful.

I wouldn't be surprised at all if Dr. Thaller hit some acupuncture points during my treatment on Tuesday that triggered a sinus cleansing -- a "Lite" version of the Luffa Cure, without the Luffas.

He has a lot of tricks up his sleeve -- I'm betting something like this is the case!

Showdown at the Fevertherapy Corral

Today starts out normally enough. I'm thankful that I'm not having any adverse reaction to the dendritic cell injections from yesterday.

I get my fevertherapy injection, and Christine tells me that it will be a moderate dose. I head upstairs to my feverbed, and settle in for the wait. In about 20 minutes, the shivering starts in earnest: and today, more than ever before, I'm hit by an intense breathlessness. It's really hard to catch my breath -- I have to sit up to make it at all possible.

Michael asks me if this is serious -- I say yes -- and he bolts downstairs to get Dr. Thaller. In seemingly an instant, the whole crew is at my bedside: Dr. Thaller, Michael, Christine and Tanya. It looks like a SWAT team in action: everything is a blur of slapping on electrodes, stethoscopes, checking and re-checking the various monitors around my bed (and setting new ones up). Dr. Thaller zooms in to give me a quick ear acupuncture (like staple guns to the ear), there is a quick injection into my port of aspirin to calm the fever and digitalis to strengthen my heart.

There's probably a lot more going on, but I'm not exactly paying full attention at this moment. I'm really struggling for breath, my heart is beating hard, it all kind of hurts, and, truth be told, I'm a little freaked out. Dr. Thaller implores me to breathe deep, into my diaphragm, in an attempt to calm things down.

The strangest part is that after everyone has done all the interventions that they can think of, there's nothing for them to do but sit around and watch my strange predicament. I'm still heaving, gasping for breath, but nothing is getting any worse, and I have the presence of mind to perceive that I must be a pretty strange phenomenon to everyone right now.

At one point, Dr. Thaller leans over to Liz and stage whispers to her: "His lungs are fine…his heart is fine…I believe that part of the struggle is in his *soul*!"

This turns out, chronologically and psychologically, to be the climax of the day's experience. I eventually calm down and go into a deep fever: 41.0 degrees (105.8 in Fahrenheit). This is very high and will be very effective in killing cancer cells. I'm always pretty delirious until the fever gets below 38.6 or so -- I keep asking Liz every couple of minutes, "What time is it?", but I never remember what she says.

At the end of the day I am completely spent, again.

I'm not sure what to make of Dr. Thaller's comment about the struggle for my soul. It makes me realize that this week is a very transitional point -- like a swing at the top of its arc, or a pendulum just before it heads back in the opposite direction. There's been a quiet here as the previous period of my life ends, and a beat, just a moment, before the next phase begins. The last couple of months has been all about finding out about my diagnosis, searching for the best treatment, fundraising so I can get here (with an extra dose of helping out my Dad during his own health crisis). Now all those events are at least temporarily stable, and I' m headed into a full-time job search and discovering the next chapter of what it is that I'm doing here.

In a strange way I'm grateful that the transition between these two phases was so clear and dramatic.

Welcome to the Big Top -- Step Right Up!

Today is the big day, the dendritic cell injection. It's the main reason I'm here (and it's also the most expensive treatment of the visit!)

The prelude is an acupuncture treatment, to prevent further lower back pain like I had yesterday. Dr. Thaller's acupuncture is unlike any that I've received in the States. There are the normal needles (in great profusion!), but there is also a steel cylinder that sounds (and feels!) almost like a staple gun -- he lines up the cylinder with a particular point, and then BAM! -- a spring-loaded tip slightly punctures my skin and infuses it with a homeopathic solution. It doesn't really hurt, but it does pound me with some force; I have to focus clearly in order to maintain my balance.

Afterwards I have a relatively light fevertherapy -- nothing like the reaction that I had yesterday, thanks to the acupuncture.

At the end of the day comes the main event, the dendritic cell injection. Dendritic cells that have been prepared from my own white blood cells (which were collected on a previous visit) are injected into both of my shoulders. Dr. Thaller has an intense focus while he's doing the injections: he seems completely at one with his needle, and his motions are a completely fluid dance around both of my shoulders. He makes about 10 injections into each shoulder, varying the location and the length of the shot each time he goes in with the needle. It's strangely ritualistic -- and when it's over, we both look at each other as if to acknowledge the completion of the ritual.

There's one additional bit to take care of, though: the injection of a dose of immature dendritic cells directly into my prostate. This dose has been prepared differently from the previous dose, and is keyed on the cells finding cancer cells that have been previously marked by the Newcastle Disease Virus that I have been taking.

I never get used to these direct prostate injections. They are only 10 seconds long, but they are supremely uncomfortable, and in addition there is a roulette effect at work. Depending on whether the needle hits one of the several nerve bundles that go through the prostate (and depending on what angle at which it hits), I can get a severe jolt of pain. Unfortunately, this effect is completely unpredictable. And today I get a small version of this jolt. Fortunately, it's over quickly!

Round 3 at the PraxisKlinik (ground level)

Today I'm back in the thick of the action at the PraxisKlinik. I get a small dose of fevertherapy for my initial visit -- and even so, Christine gives me an aspirin injection halfway through to minimize the effect. She wants to make sure I don't have too strong a reaction, in preparation for tomorrow's injection of dendritic cells (the centerpiece of this week's visit.)

Despite these precautions, I have a really strong reaction to the fevertherapy -- lots of shivering, and a relatively high fever of 102 degrees. When I try to lie down for my hyperthermia treatment, I'm not able to lie straight because of pain in my sacrum and lower back -- Dr. Thaller almost insists that I get a shot of fenadryl, but I insist on letting it calm down on my own, and eventually I'm able to relax the spasm and let the fever wind down on its own course.

For dessert, I get an injection of Natural Killer cells directly into my prostate. As always, this is one of my most fun activities here at the Klinik!

At the end of it all, it's an unexpectedly exhausting day. I can only walk home by focusing on one step at a time. And it's late in the evening before I feel normal again.

Round 3 at the PraxisKlinik (10,000 foot level)

I'm back at the PraxisKlinik Arno Thaller in Germany this week, and frankly the main thing I have to report so far is a really strong sense of serenity. I'm looking at the whole process a lot more calmly, and even the dendritic cell injections today (which have filled me with minor dread all month!) came and went today and it was no big deal. (don't get me wrong -- *they are not pleasant* ! But still, it was all over within minutes -- the injection into the prostate, and a couple of dozen injections into each shoulder.)

Part of it is that the weather is very cozy let's-stay-inside weather: the temperature is hovering around freezing, and the drizzle outside can't quite decide whether it's rain or snow.

Part of it is that Liz and I have been doing exercises this week focusing on how to build peace of mind.

And part of it is that all of the back-and-forth about this particular treatment path has played itself out. There was a great deal of drama in finding this place, and in setting up the treatments, and in going through the first two rounds of the therapy. There was also a very intense and wonderful process of everyone making such generous contributions so that I could come here and receive the treatment -- and for that I am very grateful to each of you!

Now all that is behind us (for now at least; nothing stays the same!). It's a strange comfort to be able to just cruise through the therapy almost quietly.

Snowy Pilgrimage

We settled down into our house in Markt Berolzheim yesterday evening after 22 hours of travel.

Today we woke up and it's snowing!!!

It just started yesterday, it's the first snow of the season -- roses and other blossoms are still on the bushes, and all the plants are all a startled green. We made our pilgrimage through the snow to the lindens, drank some of the water, and said hello to the place.

Afterwards we had a wonderful shopping expedition in the tiny market here. The friendly shopkeepers fixed us coffee and told us about all the cakes and pastries that they had prepared for St. Martin's day, celebrated next weekend here since it's an Evangelical village (other nearby villages are Catholic and celebrate it on December 6th.)

And yes, "Evangelical" here means a much different thing than it does in the States!

PSA down

Good news today when I retrieved my PSA score -- it was down to 2.2 on October 30th. (compared to 4.2 on October 5th).

This is really good news for a couple of reasons. Most obviously and simply -- the PSA is down, which is always the goal. This is actually the lowest it's been since I was diagnosed in July.

The other bit of good news is that the only change in my therapy between October 5th and October 30th was that I started taking ProstaSol. (In fact, my hormone blockage therapy was wearing off between those two dates, and I didn't get my next shot until October 31st. So I wouldn't have been surprised if my PSA had gone *up* instead!)

This means that I can pretty clearly attribute an almost 50% drop in my PSA to the ProstaSol. For now, it is *definitely* staying on my supplement list -- even though I have to order it from the Netherlands!

Another Viewpoint

Yesterday I had my weekly appointment with Francis, a local healer that several people have recommended very highly. He's humble, non-descript, Scottish, and has a definite spiritual power. I've felt things move during his sessions with me. And I'm a big fan of synthesizing several approaches, so I see him regularly.

I've always been with him in groups, but yesterday I started out the session with him on my own. He asked me about my Gleason score (a particular way of measuring the extent of the cancer), and asked what I was doing to treat it. I explained Dr. Thaller's procedures briefly.

Then he asked me if I had become vegetarian. "No," I said, "I've cut out red meat but still eat chicken and fish." He launched into a very articulate defense of not eating meat because of the death it necessarily entails. He was strong and pretty relentless. "There's no happy pill you can take to cure your cancer," he said. "Nothing will really happen until you take responsibility for curing your own cancer by eating the right things, and by helping heal the pancreas -- when you have cancer you don't have a proper supply of pancreatin. It's your own choice, of course, but that's what you're looking at."

I was pretty taken aback -- not just because of his firm tone, or the fact that this was the first time he had spoken more than a couple of words to me. It was the synchronicity at work. What he described was almost exactly the same treatment that Dr. Gonzalez recommends, and that I've been reading extensively about. Chalk it up as one more strong clue from the universe.

More Treatments On the Way -- Thanks to You!!

We've done the math, and we now have enough to start the next week of treatments at the PraxisKlinik Arno Thaller in Germany. (we won't have enough to get the full set of treatments that are available, but we can get the dendritic cell vaccine, which is the most important part to continue.)

All of this is possible because of your generous contributions -- thank you all so much!!

Dr. Thaller has recommended at least two more rounds of the dendritic cell vaccine after this one, and each visit will be another $18,000 -- but we have another few weeks to solve that problem.

Why did we decide to continue with Dr. Thaller's treatments after the doubts that I expressed in my earlier post? The simple answer is that I don't want to leave any stone unturned in getting healed, and Dr. Thaller's treatments have been very highly recommended. What's more, doing the treatments at his clinic *doesn't preclude* any other treatments that might do me some good later on. As long as I'm on the "symptom-free window" provided by the hormone therapy (which will last between several months and a few years), I'll be in good shape to receive additional treatments.

So Liz and I leave for Germany this Thursday -- wish us luck!

The Reviews are In

I just received an updated version of the Moss Report on Prostate Cancer*. Inside were a couple of positive mentions of the doctor I'm seeing in Germany, Dr. Thaller:

Another German practitioner with a strong interest in immunotherapy is Dr. Arno Thaller, whose practice in Markt Berolzheim, near Nuremberg, uses immunotherapies based primarily on Newcastle disease vaccine. On the whole, I have a positive impression of Dr. Thaller. He clearly understands the latest developments in immunotherapy, but also has a good grasp of historical treatments of interest (of which Coley's toxins and Newcastle disease virus vaccine are prime examples – see later in this report). The biggest problem is that if you call the clinic you are very likely to get someone who does not speak English. That is what sometimes happens when you are dealing with a small, rural clinic like this one.

and later in the report:

Arno Thaller is a medical doctor in a small private practice in Markt Berolzheim, Germany (near Nuremberg). He has a web site at www.praxis-thaller.de There you can find a very intelligent essay that he has written on the immunotherapy of cancer. What distinguishes Dr. Thaller is his aggressive use of Newcastle Disease Virus (NDV) vaccine, as well as other immunotherapeutic procedures. He has had experience in treating even advanced cases of brain cancer. From my limited experience, he seems able to stabilize some such cases, although it is too early to say what the long-term effects can be. Dr. Thaller strikes me as caring and humane, with a good reputation among other German doctors. I continue to watch the evolution of his program with great interest.

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* Ralph Moss is hands-down the best researcher I've found on cancer treatments -- he keeps an eye on all the new research (both conventional and alternative), and then synthesizes and evaluates the information in reports on each type of cancer. The reports are available at his site.

Kudos to the Webwizards

I want to send a big shout out to Jane Dowling and Jaime Levy Russell, who did an amazing job helping me set up this blog, and putting together the helpnickwest.com site. Not only did they do a great job -- but they did it in the midst of their hyper-busy lives! I am exceedingly grateful to both of you!!

Eek, symptoms!!

Ever since I got the first shot in my hormone blockage therapy a few months ago, I've been relatively symptom-free. This is a wonderful thing -- the symptoms I was experiencing in July were *awful* -- real difficulty in peeing, unearthly constipation -- all kinds of wonderful dinnertime topics.

The shots (which go under various names -- I've had Eligard and Trelstar) -- last for about three months. Because of traveling to Germany, I hadn't been able to schedule my 2nd shot until this week. Since I was a few weeks behind, I started to notice the gradual reappearance of -- eek, *symptoms*!

It wasn't bad -- a slight difficulty in peeing and slight constipation -- but it was enough to bring me up with a start and remind me that the cancer wasn't just some abstract entity. It's a real, creeping thing in my system, and unless I find a way to destroy it by the time the hormone blockage runs out, I'm in a heap of trouble.

Fortunately, the Trelstar shot* has calmed down the symptoms. And I'm confident that the treatments I'm seeking will really do a number on the cancer that's remaining. But it was definitely a wake-up call to feel what the effects of cancer can be.

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* a few weeks ago, I mentioned that I would be substituting the supplement ProstaSol for the hormone blockage therapy. It turns out I received bad information -- the doctor who came up with the ProstaSol protocol recommends staying on hormone blockage therapy while taking ProstaSol. So I'm taking his advice.