New PSA and stuff

My PSA went from 1.6 in August to 2.8 in early October to 16.6 last week. Not really what we were looking for on the PSA, but the Alkaline Phosphotase (bone indicator) dropped to 43. Kind of a mixed bag of results. We are still working with the Enzymes and Ketoconazole, but we have 2 months of increase so it is time to review once more. The initial thought for this month is to raise the dosage of Keto and Hydrocortisone to the maximum dose, which we are doing. This still may be a temporary solution if next months PSA continues to rise. We had been discussing consulting with some doctors in Los Angeles that are strictly Prostate Oncologists. Very impressive credentials and experience. We decided that we should contact them and see when we could get an appointment. They had a cancellation for Wednesday November 17th and we were able to get travel arrangements made. So here we are. I will meet with Dr. Lam of Prostate Oncology, Inc tomorrow. At some point I will consult with Dr. Scholz, as well. These are names that many with Prostate Cancer or in the arena of the treatment of Prostate Cancer would know. Teresa and I hope for some additional options explained to us and also to deal with oncologists who are very informed and educated about our options, now and down the road. As many of you who read here and also David Emerson’s excellent blog, “The Big C” know, the options for us seem to be amazingly few when compared to the large number of men diagnosed with Prostate Cancer annually. A group associated with Prostate Oncologist, Inc that was formed to bring awareness, and hopefully funding, to Prostate Cancer Research and Prevention is BlueSeptember. I have also added a link on the right side to this group. I will be sure to share my experience with this appointment as soon as possible and hope that I will be able to pass on information to any who fight the same battle. Talk to you soon!
B.

Risk vs. Reward

I haven’t written anything in awhile, and haven’t written anything much of substance in even longer. I have felt a little unsure of where I am and where I am going in regards to this cancer and my prognosis. I feel pretty good right now. I get tired at the end of the day and the fatigue sometimes leads to back and shoulder pain, but I can do things most of the day. Sometimes fishing, or building a chicken brooder, or just messing around with the kids. I feel limitations that weren’t there last year, but I also have more energy than I did a year ago. If I get decent rest, all is well. So, do I believe that this is the eye of the storm or am I actually beating this thing? That is the $64,000 question. Like most things in life that are impossible to know without a crystal ball, it comes down to perspective and faith. Perspective in the sense that I need to maintain a positive attitude about where I was, where I am, and where I am going. This is not only true with cancer, but pretty much everything in my life to help recover from cancer and to live the life that I know I was meant to live. Most days I can do this. It is only because of people like you who read these words. Even if I don’t know who reads them, because I know that people do, and it means something. The faith that I can beat this is a little harder and can be a little slippery. I have the faith, but I know that this is a tough battle that most eventually will not win. Most hope for a significant delay and each day becomes very precious, but it is hard to dare to dream that this can be defeated and gone. That is the thought that hovers in the back, sides, and sometimes front of my brain. Do I dare get my hopes up that I can be cancer free by doing my part? I have decided that I can dream that dream and win this war. It is about faith. It is the same thing as trying to live a good life, not only because it is the right thing to do, but because I believe that I can live eternally with my family and my Heavenly Father. Some may think that this isn’t cool or I am fooling myself. Do I know without a doubt that this is true, or do I have to believe on faith? It has to be faith. But, if I am wrong, so what? I have hopefully lived a life to be proud of. I will have hopefully provided a legacy of example to my children. There is only upside. No downside. This battle is the same. If I do everything I can do to fight this and believe with all my heart that I will win, I just might. Will I ever know for sure? Not until the last card is played on the final hand. If I am wrong, am I a fool for trying? No. I will have shown courage, dignity, grace, strength, and faith. I still win. No downside. The “Point of the Post” then, is this. It is okay to aim high and dream big. If you suffer from cancer or any other ailment or affliction, have faith that you can win, because you can. Don’t fear being wrong about things unseen, including God. If you end up being wrong, what have you lost? Especially when weighed against what you have gained. The human body has amazing potential, but only when it is led by the head and the heart. Risk it! You will be rewarded, whatever the result.

PSA in Spokane

We had our first appointment in Spokane, WA this week with some new blood test results. The PSA went up slightly to 2.8 and the AlkPhos was up to 49 from 39. Not really a significant rise. Overall, good results. I was able to stay Wednesday night and get my Lupron and Pamidronate on Thursday. This means I won't have to make another 3 hour drive to Spokane until November 10. I have been feeling pretty good and have had less fatigue. The pain has been much better, too. I still struggle with insomnia, but I feel like that is improving little by little. Hope all is well with all of you.
Talk to you soon!
Brian.

PSA? What PSA?

We traveled to Salt Lake for an appointment with the Oncologist that we had seen previously. I was able to have blood drawn, get the infusion for the bone strengthener (Pamidronate), and get set up with an Orthopedic Oncologist and Radiation Ocologist. I had my infusion on Thursday and got my PSA results back. Drumroll please.... 1.6!!!!! With an Alkaline Phosphatase of 39! These are the lowest scores in recorded history!! (for me) To say that we were stunned and excited doesn't even begin to tell the story. We believe that it is a combination of the Ketoconozale, Pancreatic Enzymes, and a gift from God. Throw in some strict dietary restrictions and other parts of this protocol and we think we are making some progress. Last month the PSA went from 21.3 to 14 so this is the second month in a row of substantial decline in PSA and AlkPhos. Very good signs. We are hopeful that it will continue. As others who live month to month by lab results know, things can change quickly, but we are establishing a good pattern. Thank all of you for your thoughts and prayers. It is working and we are constantly aware and reminded of all of our beautiful friends.
One note of sadness...
We have just been made aware that our good friend Ellsy, that I had treatment in Reno and Tijuana, passed away. Her, and her husband Ron, were the ones responsible for throwing me my 40th birthday party while in Mexico. Ellsy is on the far right of this picture. She was one of the bravest people I have ever met. Through pain and tough times she always had a smile, a kind word, and thoughtful support for everyone she met. She fought hard and testified of her love of the Savior. She was, and always will be, a true inspiration to me and my family, as well as many others. I want Ron to know that she is loved and will be missed greatly. I have the deepest love, admiration, and respect for both of them and wish Ron all of the comfort that God can grant him. He is a true gentleman and Ellsy was a beautiful lady.

All my love,
Brian.

Slow, but sure...

We finally have gotten a handle on the treatment program. I was able to go fishing today with Bruce, my father-in-law. The fishing part wasn't what we hoped for, but I was able to leave early, take all my supplements with me, and stay out until 4pm with no problems. Being able to stick with this program exactly, but still have the freedom to do the things that I enjoy made it a great day. I will be looking forward to many more. Hopefully, with a few more fish!

B.

Treatment or Disease?

Treatment or Disease?

I had sort of a bad night last night. I felt okay and didn’t have any pain. I just couldn’t sleep. It has become apparent that the Hydrocodone that I needed for pain management has become physically and/or psychologically important for a decent night’s sleep. That, in and of itself, is not a big problem. The tough part is that part of my enzyme therapy is a fairly intense detoxification. So if the meds are not for pain, I need to get off of them. I decided that last night should be the night to start. I lay awake until about 3 am, unable to sleep. If it was just insomnia, that would stink enough. Instead, I get a very intensely uncomfortable and restless feeling in my arms and legs that make it impossible to lay still. I start to fidget and end up fairly miserable. That is where the fun really starts. As I get increasingly more irritated that I can’t sleep, all the other injustices start to flare up. This program that I am on is very structured. Pills, juices, saunas, and other less delicate parts of the protocol take place between every half hour to hour throughout the course of the day. While just drinking a vegetable juice or swallowing a handful of pills doesn’t sound obnoxious and exhausting, take my word for it, it becomes that way. When your day becomes a steady stream of “have to’s” and very few “want to’s”, it becomes easy to dread the arrival of a new cycle of treatment. It makes you look forward to a night of uninterrupted sleep. When you can’t have that, ironically because of another pill, it can make you a bit agitated. I am being descriptive about this not because I want to upset those close to me or to garner sympathy. My wife dedicates her day and her life to the preservation of mine. She works tirelessly day after day to make sure that I have the pills, the juice, or anything else I need. The only time she complains is if I am trying to do more than I should instead of saving my energy for healing. So, I wondered what I was trying to say. I almost wadded this up and threw it away as I got to this point. Then I remembered why I decided to start this blog. To share my experience in the hopes that others would be able to relate and find hope. I know that I am not unique. Others have cancer. Others have afflictions, sickness, and trials. Others lose hope and are not sure where to find it again. Others have treatments that are far more invasive and harsh than what I go through daily. Sometimes, in down moments, the treatment seems like a bigger pain than the disease. That is where the support is really needed. Not only to support you through the disease, but to distract you through the treatment. Sometimes you wonder’ “Will all this effort pay off?” and “Am I using the last time I have left on a ridiculous wild goose chase?” I won’t know the answer to that until it works or it doesn’t. If your child was on a bike and about to be hit by a bus, would you only leap to save him or her if you knew the outcome? Of course not. Life or death decisions call for a leap of faith and to believe that it will work out. One way or another. What I have found is that each person can’t be all things to you. My wife, Florence Ratchet (part Nightingale and part Nurse Ratchet from “One Flew over the Cuckoos’ Nest), not her real name, is dedicated to taking care of me. Sometimes she has to nudge me in the direction I need to go. My Dad, my kids, and my brothers are there to distract me and make me laugh. My Mom, Mom-In-Law, and my sister support me and my wife in whatever way needed. They are not all things individually, but together they are everything. It boils down to why you want to overcome the situation. With mine, it is because I will always do all I can to show my children that life is worth living. It isn’t easy sometimes, but the good times far outnumber the bad. The hard times fade after you move through them. If this wasn’t true, mothers would never have more than one baby. When I get stuck in a dark place and wonder if the treatment is worth the cure, I look at the effort of my wife and kids, the love and support of family and friends and realize that sometimes they know better than I do. I just need to put one foot in front of the other each day and know that I will look back at this someday and have one hell of a story to tell.
PS – I feel a lot better this morning. :)

Awake from my Siesta!

Sorry for the delay between posts. We have relocated to Montana to work on this Enzyme Therapy. I have been on it for about 4 months and have seen the progression slow to almost a stable condition. It is only a 3 month window, so we will have to be patient and continue to work at it. It is, however, reason for hope. We have started with a new guide on this journey with our enzymes and feel that she is the right one to help. She has a very structured program and leaves very little to interpretation. As any of you who are on this same path know, that is a huge step in the right direction. My PSA dropped from 21.3 to 14 after the radiation was complete. That is not unusual, but with the stable bone scan, before the radiation, we feel like we are stringing together some good signs. I am going to post how this therapy works later tonight or tomorrow. Hope all is well with all of you!
B.