Where I Stand Now

One week after returning from treatment at Hope4Cancer in Mexico, here's where things stand:

I'll follow the two weeks of treatment at the clinic with eight weeks of home treatment by ultrasound (more on this in a later post)

My anemia has become very severe. My hemoglobin level has declined to 8.72, which means that I am ridiculously weak (like can't-make-myself-get-out-of-bed weak). Fortunately I'm getting a blood transfusion today that should make me feel much better for a few weeks (the last one helped me out for 5 weeks).

My appetite is also in the tank, and it's been hard to force myself to eat anything substantial. Being in the clinic helped, but now that I'm home it's a bit hard to reproduce that kind of regular, encouraing routine! The blood transfusion today should also make me more hungry.

Liz has decided that she shouldn't / doesn't want to commit to our relationship, so we will be going our separate ways.

Accordingly, I want to extend a heartfelt thank you to those of my friends that have stood by me and offered their assistance -- thank you all so much! Your kind thoughts and offers have helped immensely and I love you dearly for it.

UPDATE (4/27): the blood transfusion helped tremendously -- both my energy and appetite are much improved -- yay!

Going To Mexico!

OK, everything's set -- Liz and I are Going to Mexico next week!

I investigated the sonodynamic therapy (SDT) that Ralph Moss suggested at the clinic in Xi'an, China. It's an offshoot of photodynamic therapy, which is a fairly standard American therapy for surface cancers (like melanoma). SDT is a relatively new treatment that shows good results for prostate cancer (and bone metastases) that can't be reached very well with surface treatments. (See my earlier post for more details and a description of how it works; the link above is the best scientific description I've seen, and has case studies of 116 different patients that have been treated with SDT.)

Further investigation revealed that there are three places in the world that currently offer this treatment: the clinic in China (which moved over from Australia), the Dove Clinic in London, and the Hope4Cancer Institute in Tijuana.

They all use exactly the same sensitizing agent and treatment technique for sonodynamic therapy.

And I can *drive* to Tijuana!

What really sealed the deal was my conversation a couple of days ago with Dr. Tony Jimenez, the head doctor and researcher at the Institute. He's a nice guy from New Jersey who's intimately familiar with a lot of the best therapies that I've been researching, and has a great approach to the combination of treatments that I'll be receiving at the Institute. I liked him a lot, and you'll be hearing a lot more details of the treatment once we arrive.

I want to take this opportunity to express my deep gratitude for all of you that have helped to make this trip possible. I'm not fooling myself that this is any kind of "miracle cure", but it's a darned good shot at getting substantially better, and I couldn't be doing this without your incredibly generous help. Thank you so much!

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!

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!

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!

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!!

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.

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.