Back on the Balance Beam

One of the advantages of putting together my own health care plan is that there are so many options to choose from.

And, the major disadvantage of putting together my own health care plan is that there are so many options to choose from!

This week has been pretty confusing, as Liz and I have been weighing the pros and cons of continuing with Dr. Thaller's treatment vs. starting one of the other promising treatment regimens that I've run across.

On Dr. Thaller's side: he's a great guy with a fabulous curing attitude; the four treatments he offers are very highly-regarded*; I'm not even halfway through the series of dendritic cell treatments; and frankly, I want to try *anything* that has a good chance of helping me to heal.

On the other side, it's soooo doggoned expensive. The next treatment series will be $18,000…and there are two other series waiting for us in the next couple of months at the same cost. Since so many people have been so amazingly generous with their contributions, I want to make sure that their money is well-spent.

There's also some doubts about the dendritic cell therapy, which is the core of the next few visit to Dr. Thaller. Ralph Moss (the most competent researcher I've come across) said that many people consider this line of inquiry to be "yesterday's news". (To be fair, there are lots of people praising it to the skies as well.)

In the midst of this confusion, I've been reading about two other therapies that might really help out someone with an advanced cancer like mine.

The first is Dr. Pfeifer's prostate protocol . He's the head of the Aeskulap Clinic in Switzerland, and developed a series of four different supplements for men with *very* advanced prostate cancer (even worse than mine). There's just been an EU-wide study on it that concluded it produces a 50% reduction in PSA in 70% of the patients treated. (PSA decreases if your cancer is decreasing).

The second is the combination supplement-and-diet regimen of Dr. Nick Gonzalez in New York City. He started out at Sloan-Kettering examining a "folk" remedy that had achieved some notoriety back in the 70s (actor Steve McQueen was on it). He found out it had a 93% *cure* rate, quit Sloan-Kettering, and started his own practice administering the regimen.

The case reports are really breath-taking for this treatment. Take a look at them and you'll understand why we're on the fence about what to do next.

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* Dr. Thaller's 4 treatments are local deep hyperthermia, Newcastle Disease Virus, Coley's Toxins and dendritic cell vaccine. (there's also Vitamin C and oxygenated blood infusions, but those are just gravy.)

Come to the Sluggo!Ball in Austin!

This evening there's going to be a benefit to help with my medical expenses. It's the "Sluggo! Halloween Ball" (named after a fanzine I put out here in Austin back in 1979-80), and it's at Emo's starting at 10pm. If you're in town come down and say hi!

I'm extremely grateful to all my friends that have worked so hard to put this together, including Grand Magister Phil Lenihan, Jane Dowling, Rick Turner and all the rest. You can see details of the Ball here.

Nurse Liz Comes Through!

Only half of my treatment takes place at the clinic in Germany; the other half takes place at home here in Austin. Each time we leave the clinic, they pack up a month's supply of Newcastle Disease Virus into a dry ice container. Every other morning, Liz injects a small vial of the virus into me, in a 5-step procedure.

First, some background. The Newcastle Disease Virus selectively attacks cancer cells, and leaves normal cells alone. The problem is that the immune system starts clearing out the virus the moment it's injected -- so it's a race against time to have the virus in me for long enough to zap a good amount of cancer cells. To maximize the impact of the virus, Dr. Thaller has had two ports installed into my chest so that these injections can be aimed at particular parts of my body. One port aims toward my upper half, the other toward my lower; this way the virus injections aren't diluted by the entire bloodstream, and can therefore affect the bone metastases in different parts of my body.

So, the injection procedure: I prepare three different syringes -- one with saline solution, one with saline solution plus the virus, and one with taurolock and heparin (to keep the ports and the catheters clean). Liz then pokes a needle into my port, and attaches all of the syringes in a particular sequence until everything is inside me. It's all painless except for a tiny stick at the outset, and it takes about a half hour.

I am constantly amazed and grateful for Liz's steady hand in accomplishing this -- the whole procedure is *not* something that comes naturally to her, and she has really been a godsend with her perseverance and calmness.

Dr. Thaller says I need to keep injecting the virus for a year to have it be truly effective. Fortunately, there are absolutely no symptoms while the virus is active in my system -- only once did I feel a few cold-like symptoms (and that was on a day when I had run myself ragged and had only four hours of sleep).

Thank You, Thank You, Thank You, Thank You!!!

I want to extend a very heartfelt thank you to each and every one of you that has sent your contribution my way recently. This includes those of you that have so generously made donations, and those of you that have gifted air miles, and those of you that have sent well wishes and good thoughts in one way or another. What a wonderful difference it has made to know that all of you have helped so much!

Liz and I sang a song of thanks for all of you this morning, and I am holding you in my heart as I write this.

And a very special thanks goes to Liz, who has given of herself (and contributed!) more than generously, more than anyone could ever expect. I am well and truly humbled, and exceedingly grateful.

"So, how *are* you??"

I get that question all the time, and understandably so.

Cancer is a frightening disease, and this perception isn't helped by the fact that most standard cancer treatments make the patient look even *worse*.

Chemo and radiation are so pervasive in this society that we have started thinking that cancer patients = cancer patients with chemo, and we expect anyone who has cancer to lose their hair, look fatigued, appear wasted and skinny, etc. There's a Proposition here in Texas for more cancer research, and the billboards show a bald woman -- as if *all* cancer patients must forevermore look like that!

I keep reminding people that there are alternative treatments for almost any cancer, and that they really do have a choice beyond just chemo and radiation. I'm definitely not an expert on any cancer at all -- and even with regards to prostate cancer I'm just a very-highly motivated researcher. But even with those caveats I've found lots of options.  If you know of anyone that has received a diagnosis of cancer, just have them google "the Moss Reports". Ralph Moss is a researcher that has collected a lot of information on cancer treatments (both conventional and alternative) and has put them into individualized reports for each type of cancer. His reports saved me literally hundreds (if not thousands) of hours of research.

OK, so I'm ranting -- but how am I? The treatments I'm receiving at the PraxisKlinik in Germany are based on strengthening my immune system rather than poisoning the cancer. The upshot is that I look and feel almost normal. I have all my hair, I have no sunken eyes or drawn features, and in fact I've (thankfully) lost 15 pounds over the past few months because of a much-improved diet.

I'll be evaluating the treatments every six months to see how they are doing against the cancer -- the cancer will indeed cause horrible symptoms if it grows unchecked. But that's not happening now.

So, short answer: I'm doing great -- how are you?

A Note on Donations

(UPDATE: If the ChipIn widget is being slow for anyone, or if you'd like to donate in another way -- please feel free to contact me at nick AT outskirts DOT net.)

I just wanted to let everyone know that they can contribute to my medical expenses by clicking on the ChipIn widget on the left-hand side. I'm going to have to come up with around $14,000 to continue my dendritic cell therapy at my next visit to the PraxisKlinik on November 12th. It would be an immense help if you could donate a little, if you're able. I will be very, very grateful for your support!

The ChipIn widget lets you use PayPal or your credit card to leave a donation. You can also use an "e-check" from your bank -- you put your bank account number into PayPal's secure form and it's treated like an actual check. E-check donations take about 4 days before they clear the bank and show up in the widget thermometer.

You can also gift airmiles via the link to the left -- Liz and I have to fly back and forth to Germany every six weeks and from Austin, there's not really any cheap way to do it -- the best price we've found so far is about $800 round trip. We considered finding an apartment over in Germany, but I have work here in the States and need to take care of my Dad.

Dad

For the next chunk of time my posting here might be light -- I'm trying to find care for my Dad, who's just gotten out of a long hospital stay and needs some help getting around.

Liz and I are headed back to Germany in November so I can receive more treatments at the PraxisKlinik in Markt Berolzheim -- the current schedule is to be there one week out of every six.

Back Home Again...Sheesh!

Today I go for my monthly visit to Lone Star Oncology, where I get an IV drip of Zometa (a bisphosphonate that will strengthen my bones, which are weakened both by the metastasizing prostate cancer, and the hormone therapy that I'm on).

I also talk with Dr. Shimkus about the results from my CT scan last month. (amazingly, just like with my bone scan a couple of months ago, there are *no visuals* provided with this scan -- even though the test itself consists of taking a picture! All that's provided is a very technical description of the my internal situation, which someone has painstakingly constructed from the picture itself. The visual scan (which would clearly show how serious a pattern of cancer is, and already exists in a file somewhere) would be an extra charge! My doctor in Germany is astounded at this practice and considers it unethical.)

Dr. Shimkus appears to be a bit surprised that I am going to change my hormone therapy by substituting the herbal compound Prostasol* for the Eligard shot that I am due to receive again this month. He gently tries to dissuade me from making the switch, but I am insistent (it will have fewer side effects -- specifically, less night sweating).

I ask a few more questions of him (such as, are there any therapies that I should be considering that I'm not on now?), and at some point after our meeting passes the 15-minute point, he appears to become a little impatient and tells me point blank: "You know, you are *always* going to be dealing with these bone metastases."

I'm slightly taken aback by this, but it isn't until later that I process what he was trying to convey to me: "hey, you've got inoperable cancer, there's nothing we can do about it -- get used to it!!"

Now don't get me wrong, I'm not in denial: I know I've got very serious advanced metastatic prostate cancer, and "statistically" my prognosis is poor. But I also know that there are *many* examples of people who have gone into remission from where I stand, and that there are also many fruitful lines of treatment that lie completely outside what the official "statistics" measure. So I refuse to be categorized by any kind of "get used to it!" diagnosis.

Even beyond this, the reason I get angry at attitudes like this is that there's simply no need for doctors to discourage their patients with this kind of framing. Take the example of Dr. Thaller: his stated *intention* to me is that "the tumor must vanish!" He of course gives me the necessary caveats that he can guarantee no such thing. But I walk away from that conversation with confidence, and a knowledge that my caregiver is fighting for me.

Conversely, when someone tells me to "get used to it", I'm discouraged, and it tells me only that my doctor wants to *manage* me. It honestly takes me four or five days to readjust my attitude after this encounter.

Sadly, I see this attitude everywhere in the States. Even the billboards for Proposition 15 (a Lance Armstrong-backed cancer research initiative) feature a bald cancer patient. That doesn't tell me that "we intend to cure cancer" -- that tells me that "all cancer patients look like death warmed over because we give them chemotherapy."

Don't vote for Proposition 15 -- it will just give more money to the same pharmaceutical and insurance giants that already poison people with chemotherapy and radiation.

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* I'll be taking the Dutch version of Prostasol -- the American version was found to be tainted with estrogen.