Pain Management Merry-Go-Round

(WARNING: TMI alert for this post!)

Thanks to all of you that sent notes, calls, and well-wishes this week. Sorry I haven't been able to get back to you and thank you properly, as I've been caught up in a pain cycle I wish I could get out of.

I have a couple of good hours a day (like right now), and then my bone pain starts up again. I have a variety of escalating remedies I can take for it, but I always end up (unfortunately) with vicodin. Even with that I am still sometimes crazy with pain at night.

The vicodin makes me really constipated...and the bone metastases also make me really constipated, since they dissolve bone material into my bloodstream. Together, both processes make me painfully constipated, which just adds to the cycle.

Two days ago I felt good enough to take a long walk...but I started feeling a dull ache near my perineum, and have had blood in my urine ever since. I have a call in to the doctor to see if there's any immediate action I should take. (I hate wasting the perfectly good blood transfusion that I got just last Saturday!)

Once I'm able to decrease the pain, I'll be able to evaluate whether this dear old body will be stable enough to move into an apartment on my own. For the past few days I haven't been very sure about this.

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!

Bad Pain -- it's a Good Thing!

Sorry for the slow posting about my stay here at the clinic. A lot of times the days are long here: I have six separate treatments every day, and then there's our three vegetarian sit-down meals, and the three juices in between meals.

But honestly, most of my time the last few days has been taken up with dealing with the pain of the therapies. Each one of them is intended to produce an inflammatory response in order to attack the tumors. And believe me, I am getting these inflammatory responses in spades! Unpredictably throughout the day, I'm getting intense pain in one of several areas around the tumors -- but mostly in my pelvis, where my tumors are concentrated. These waves of pain knock my socks off for a few hours at a time, and I have to stop whatever I'm doing and lie in bed. (although it's difficult to take weight off of my pelvis no matter how I twist and turn!)

This is actually a very good sign, as it means that the treatments are being effective against the cancer. I can stop the pain completely for a day by not doing any treatments for that day -- but then, that defeats the whole purpose of why I'm down here, doesn't it? So since I want to keep moving ahead with the treatments, the clinic has several (non-opiate) painkillers that I can use. The best has been a treatment that Dr. Tony has administered the past few days: pulsed light flashes to the acupuncture points for pain relief in my ear. The last few nights I've been able to sleep soundly, without intense pain. It's made the whole treatment process much more manageable, even allowing me to make a few blog posts!

oops, a little blood leak...

The last week or so has been pretty interesting...in the sense of seeing new phenomena in my body that I'd rather not see.

I started losing some blood through my urine...not painful, but I'm really not used to seeing something the color of Hawaiian Punch in that neck of the woods!  At the same time, I started becoming noticeably weaker -- by mid-afternoon every day, I really needed a nap.

Blood tests showed that my red blood cell count was dangerously low (10.2) -- I was suffering from anemia.  The doctors originally thought it was due to a urinary tract infection, and gave me a round of antibiotics to combat it.  This did nothing.  I came up with a more likely cause when I noticed a bruise developing at the bottom of my ribs. My hypothesis (admittedly nothing more than the opinion of a *very* interested layperson) is that the metastases growing on my ribs were causing some internal bleeding, which was being siphoned off by my kidneys into my urine.

I got a blood transfusion last week at Alta Bates, which helped my strength somewhat. And fortunately, the (external) bleeding has completely stopped.  I never was in any pain -- but it was a definite (and STRONG) reminder that I need to get myself into a powerful treatment program ASAP!

dealing with new symptoms

I'm a hardcore morning person. Every day I get up with an almost-unflappable positive attitude (which I cultivate as much as I can.) Usually I can't even remember anything bad that might have bugged me the day before; the slate gets wiped clean every day.

The past few mornings have been a bit challenging, though. My sense of being an independent observer looking at all my "cancer stuff" is dissolving, because I'm having to deal with more symptoms on a daily basis. My appetite is starting to decrease for the first time in the whole adventure. One out of every two days my hips are painful enough to make me pop a Celebrex for relief. I'm starting to occasionally feel the tumors in my spine, shoulder and jaw. Today I'm a little bit nauseous.

Most of what bugs me is just the worry and anxiety tht the symptoms will get worse if I don't find a way to turn this around pretty soon. But still. Dang.

reality check with Dr. Swift

(black dots are tumors; click picture to enlarge)

I had a bracing talk this morning with Dr. Swift, my radiation oncologist (I'm not getting any radiation, but he's the resident prostate cancer expert at Alta Bates).

When I got a copy of the film at the bone scan last Tuesday, I knew it was bad...but I could only stand looking at it for a little while and I filed it away. My coping mechanism was to immediately dive into researching what my next treatment would be (a process I actually enjoy -- it gives me hope, a sense that possibilities actually do exist out there, and it's something over which I exercise partial control).

Talking to Dr. Swift today reminded me in stark terms exactly what I'm facing. The worst metastases are in the pelvis, which have developed dramatically since my last scan six months ago. I also have many, many new metastases -- mostly on vertebrae, but also a few on my ribs and scapula.

So where do things go from here if the cancer keeps progressing? The bones where the metastases are will become weaker and weaker, and eventually break. A break in my pelvis means pain, six months of being bedridden, and a big, big hit to my mental state. A break in one of my vertebrae might mean partial or complete paralysis.

Needless to say, this is a HUGE motivator for me to find a more effective treatment than what I've been on. It's also a giant challenge not to think about dreadful possibilities all the time. This is the strongest challenge to my cheerfulness and equilibrium that I think I have ever encountered. Fortunately I'm still upbeat most days -- going to the ashram for chanting or meditation really helps, and Liz is being a peach!

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!

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!

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.

----
* 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.

"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?