Brian - Prostate Cancer IV

2012-01-18T10:28:00.002-06:00

There isn't much to report lately. My hemoglobin has been maintaining betweeen 9-10, which for most people would be low, but I seem to do okay with. I don't have a ton of energy, but enough to do the things that I need to. I still get tired in the evening and I need the extra sleep. But at least I am up when I want to and need to. The kidney seems to be operating fine. I will go back in to have the Nephrostomy tubes looked at in early Feb to see what the long term solution for drainage will be. The retaining of the fluid from extreme swelling of lymph nodes is what caused that part of the problem, so unless we know that the swelling has decreased drastically, which we don't right now, then we need a backup plan to make sure that I don't retain fluid and end up back in the hospital. Other than that, things are pretty quiet right now and I like it that way.
B.

I vant your blood!!!

2012-01-07T09:58:00.002-06:00

This week all seemed to be going pretty well except for some strong fatigue on Monday and Tuesday. I was in anyway for blood work so they checked kidney function and hemoglobin to see if I was still anemic for some reason. The kidney function looked great. Better than it had since before the hospitilization before Christmas. The hemoglobin, however, for some unknown reason dropped to 7.1. I definitely noticed a drain in energy. They decided to give me 1 unit on Tuesday and one on Wednesday. I started to feel a little better after the first one, and a lot better after the second one. Hopefully, we can get my body to make the adequate number of red blood cells and get away from the transfusions, but at least I have a good option if I need it. It is a great reminder to me, even though I can't donate now, please help to keep these blood banks full. It is a great way to help your fellow man, even if you don't know who it might be. It is used for so many emergent and non-emergent situations, but it truly saves lives. If you see a blood drive, and it's been awhile, and you have a couple extra minutes, picture someone you know or love that might depend on this type of gift and give a little bit of yourself.
All my love and thanks!!
Brian.

Christmas Love

2011-12-25T10:22:00.003-06:00

The events leading up to Christmas this year, including my week-long stay in the hospital have confused my state of mind. I try to keep things in today and not look too far down the road or project situations that can't be dealt with yet. So while I believe that overall I am still accomplishing these goals, the feeling of being not well and definitely not up to the standard I would hope for myself, causes me to feel a little more mortal than I want to. The thought pops up in the back of my mind about how many of these Christmas's do I get. The cavalier part of me says that I will fight and get as many more as I want. The realistic part says that if I see another one after this one, I should count myself among the very fortunate. I hope to feel better soon, and to be truthful, I do, day by day, little by little. But I also know that my treatment options have been reduced to a very few. And those are real long shots for me now. My reason for this post isn't to whine and elicit sympathy. It is to help my put some things into perspective as I go forward with my day and turn the corner on a new year. The thought goes that you always find out who your friends are when the chips are down. I wish I knew what I did to deserve the friends and family that I have, because I would have done much more of it. Our Mormon Church family, has just taken my belief in support, love, charity, support, and Christ-like service and exploded it into something that I could not have imagined if I tried. I am not saying this lightly. They have brought dinners, members to visit and pray, friends to distract the kids, heartfelt beautiful gifts for Christmas, and just their love to help us know that Heavenly Father is not punishing us, but is loving us with all of His strength through this necessary trial. I feel His concern for us and know that we are not going through this in the background of His Mind, but cradled in His Loving Hands. For non-religious people, that may sound far-fetched or even irrelevant. When you enter this type of situation with a young family and a young wife that you adore, I assure you, it is everything. And it is not just the feeling of God's love coming to me from a distance, it flows through every handshake, every hug, and every smile from those that know that we are meant to love each other. Everything else in life will fall into place if we have the type of unconditional love that true charity for our fellow man brings us. I am probably in a preachy place today and feel that I need to get some of this amazing gratitude for my family, who just loves me and the friends that I feel has done so much more for me than I have ever done for them. My Christmas message then is this, Thank you so much from the bottom of my heart. Not just for the gifts, but for showing me and my family how to give of ourselves and belong to a family and a church that stands tall for what it believes. And when the chips are down, and you are digging through the scattered remains of your life and belongings, a Christ-like family is there holding a Lasagna.
I love you all with all my heart!
Brian.
Merry Christmas!!!

2011-12-23T19:30:00.003-06:00

The tubes started to work again and I had a good visit with the Doctor. We are still considering Chemo , but the blood levels and kidney function are having a hard time supporting it. We will continue to monitor and meet with the doctor on January 6, 2012. If I don't write again, Merry Christmas and all my love to all!!
B.

2011-12-23T06:44:00.002-06:00

I'm off to what I thought was a regular visit to the doctor this morning to discuss chemo, etc, but now I have to find out what happened to the tubes and bags that collect my urine before they make it to the bladder. Last night about 3 am, both tubes decided to stop collecting urine. Fortunately, I am still piped the regular way also, so I was able to relieve the normal pressure, but hopefully this is something minor and doesn't land me back in the hospital, especially this close to Christmas. We will keep you posted.

Where have I been?

2011-12-21T13:02:00.002-06:00

That is a question for you and for me. I guess for you since I have been MIA for a week and an half and for me, because there are blocks of that time that I am not sure where I was. My last post found me at my Mom's for a Christmas Party on Sunday Dec 11. The extreme fatigue and leg swelling would not let up and some blood work showed a Hemoglobin of 8.3. Time for 2 units of blood on Tuesday the 13th. They told me after about 2-3 days that my energy would come back up as the hemoglobin rose. By Monday of the following week I was not able to stay out of bed for any meaningful amount of time. I also had a ridiculous thirst that I could not catch up with. On top of that my left leg is holding a ton of fluid and is obviously swollen greatly. They tested my hemoglobin to see if I was losing blood again, but the hemoglobin was steady, but not great at 9.3. No transfusion, but they thought some fluids would help with the dehydration. I took the fluids by IV and came home. I immediately fell asleep on the bed. My wife woke me up a couple hours later with a much greater degree of swelling in my foot, my let, and all the way up my groin. We called the doctor line again. This time they suggested that I get to the Downtown Main BJC Emergency Room. We did that. By the time we got to the emergency room, I was in Acute Renal Failure with a creatinine rate of 5.96 (normal around 1.o). We still had to wait for 6 hours, but my right kidney had been damaged from the cancer for the last year or so, so I knew that function was low. What happened was the enlarged lymph nodes pinched off every bit of fluid drain in my abdomen effectively shutting down my left kidney as well. At the same time, they did manage to locate a blood clot in my left groin. Problem is, it could not be treated until my kidney function restored itself since the blood thinner, Lovenox is processed through the kidney. So The day I arrived on Tuesday, I was so toxic I don't remember anything. Wednesday I was given a twighlight drug to put nephrostomy tubes in my back to bypass my kidneys and bladder. It is temporary right now, but we will review in a month to see what to do with it long term. Within the first 24 hours, they drained over 5.5 liters of fluid from my left kidney alone. So I do not urinate in the conventional way, it drains through the tubes into pouches that I empty periodically. That part, while it sounds bad, is actually more convenient than what I have dealt with over the last few months. The good thing is, I am home, I'm mostly stable, and I greatly appreciate the friends and family that I have been blessed enough to be with. I can't say enough about our church, our family, our friends, people I blog with, etc. I will write more later. Worn out.

Love all of you more than you will ever know.

2011-12-11T11:16:00.003-06:00

The swelling in my leg has resolved itself somewhat. There is still some swelling across the top of my foot, my ankle, calf, and knee. But it is noticably smaller than when we first identified it. I still think there is lymphedema there and we we will probably have to deal with it again eventually, but I am happy to see it shrink up somewhat. I was hoping for a little more relief with the fatigue after the blood transfusion. I took 2 units to try to get my hemoglobin back over 10 again. Yesterday I felt a little better, but today is the first day since Tuesday that I feel like I am getting on my feet again. The nurse had said that she expected that Sunday would likely be the day that I would start to feel a real change in the energy level. So hopefully, we are on track to being able to stay awake more than 4 hours at a stretch. We kick off the Holiday Season with a get together at my Mom's house today, so I look forward to seeing all that can make it. All my best to you and yours in this wonderful Holiday Season!!

Brian.

The Roller Coaster Rides on!

2011-12-05T14:10:00.003-06:00

On my way home from my Dad's Sunday night, I felt that my left leg was swollen and tight. It was hard to tell if it was real or imagined since I was driving. After I got home, 45 minutes later, I decided on a well-needed shower. When I was able to see both legs, there was no doubt. My left leg was twice the size of my right leg. The skin was tight and puffy. I immediately thought "blood clot", but I did not have any pain, it was not hot to the touch, and I could move it pretty easily. I called the on call doctor and he said to get to an ER to have an ultrasound done to eliminate the blood clot possibility. So we did and the ultrasound did not show a clot, just a really fat left leg. One of the the things that did show up though was that my Hemoglobin was 12.5 in September, 11.6 in October, 10.6 in November, and had now fallen to 8.3 today. So while we think that the swelling in the leg is lymphedema, because the lymph nodes are so enlarged they can't drain, I am definitely in line for a blood transfusion tomorrow. I am to keep my legs elevated as much as possible and if the swelling does not resolve itself in 2-3 days, we will have to look at options to get them to drain. Still could be a problem there, too. Not sure what that will be yet. All for now. The blood test at least explained the extreme fatigue that I could not figure out. All my best to you and yours.

Brian.

CT Scan Results

2011-12-02T18:46:00.002-06:00

I had my latest PSA and CT Scan on Wednesday and got the results today. The PSA dropped from 140 to 91 due to the 12 treatments of radiation directly to the tumor on my prostate. The measurements of the tumor however have not shrunk. The doctors do think that I may have gotten some residual help on the tumor near my colon which is good news. That can hold off a big part of the chance that the tumor could penetrate the colon leaving me septic and very sick. The down part is that the cancer is continuing to progress. It has made measurable increases on most of my lymph node chain including the post-aorta nodes near the heart. Since it is spreading quickly, the next step would be Cabazitaxel. This is a newer FDA approved chemo. It has had varying effects on different people. The biggest thing to watch is the potential for sudden drop in white blood cells which make up your immune system. They have ways to boost that if necessary. But that is where we would look at next. It is very much a systemic disease so it would have to be systemic treatment. I would want to weigh risk vs. reward on reintroducing chemo before I gave the go ahead on this one. We decided to CT Scan in 8 weeks, see how quickly things have progresses since now and possibly set a baseline if we go the chemo route. Things roll on, but always one day at a time. I am enjoying spending time with family and we will see where we are in 8 weeks. All my best to you!

Brian.

2 years come and gone...

2011-11-23T19:27:00.004-06:00

Even though the 2 year anniversary of the diagnosis came and went on November 12, it was without much fanfare. In reality we had a very real concern about this illness back into July of 2009. Changing doctors and procedures finally confirmed it for us. I don't think it is possible to list the things that have changed in the last 2 years, and I don't think I could list what hasn't changed. The only thing that is constant is change. It gets harder to identify how I feel about things. Sometimes it feels like House Arrest. Sometimes it is like I am being given time to realize how good I have it. Many days I just hope that the next round of testing will bring good news. The thing I am most thankful for today is that I feel the love and prayers from some very close to me, some that I have met through this, and some that email back to me now and then, but I have never met. Those are the times that get me through this and where I get my strength from. The comments from people that this blog is meaningful to them or gives them direction and hope. These words are given to me as gifts, and I hope that I do them justice as I pass them on to you. The internet and this blog have been a huge blessing to me and I hope that we can continue to blog for a long, long time. Until next time, Happy Blessed Thanksgiving to all. Please don't forget to express your love and support to those that need it ( and those that don't) this Holiday Season. Life is too short to let one pass you by. All my love to you and yours!

Brian.

Busy, Busy, Busy...

2011-11-01T19:50:00.004-05:00

Since I last wrote, I was lucky enough to attend Games 1, 6, and 7 of the 2011 World Series where my Cardinals added their 11th Championship. I had never been to a World Series game and my son, who is 12, is at the age where he had developed a strong interest in the Cardinals. Game 1 was exciting and fun to see a win. Game 6 was like nothing I, or most people, have ever seen. If you are a baseball fan, you know what I am talking about. An instant classic. Game 7 was great to see the victory and the celebration. An entire city gone wild about a team that is part of the stitching of the St. Louis culture. The players come and go over the years, but the Birds on the Bat are something you can sit and talk to anyone of any age at any coffee shop anywhere in St. Louis, and you are old friends. That is why I wanted to get back to St. Louis. It is not the Greatest City in the World or the Best City in the US to (fill in the blank), but it is my home. It is where my culture is. Where my family calls home. As we traveled to clinics and I moved around for work, I found other places that I met great friends that I consider part of my family, but home is truly where the heart is. It seems silly that a sporting event can remind you of that, but it is in the family get-togethers and the ease of dropping by to visit. I appreciate having roots and showing my children not just where I grew up, but how I grew up. As I travel this journey with cancer, it is not just for me to show them how I want them to live, but how I did live and what I liked to do and where I did it. I wish all of you the very best. My love to all of you.

Finishing Radiation

2011-10-12T23:14:00.003-05:00

I am now 8 treatments of 12 through the radiation designed to shrink the tumor that has attached itself to my prostate, bladder, and colon. I have not really seen much benefit yet, but it is really too early to see the result of radiation. It takes time for the cancer to try to relplicate and then die to see shrinkage of the tumor and then, hopefully, a reduction in the pressure against all of the nerves in the area of my lower spine. I should start to see a change in about 2-3 weeks, though. The visit to the doctor last Friday showed the PSA rising from 96 to 140. I suspected that we were in store for a jump, so I wasn't surprised. The radiation should give a temporary drop in PSA when it kicks in, also. It strikes me sometimes at how surreal this whole situation is. Over and over. Kind of like those videos where the guy slips in the mud and keeps trying to get up, only to fall back down again and again. I feel like I get it, only to realize, through more reality, that I don't. The good thing is, I don't feel like I have to anymore. I have realized that, through family and friends, that my life is so full and so much love surrounds me and my family right now that I don't have to worry about all the little nuances of whether I will beat this or not. I finally feel that I have given this situation over to the God of my understanding. I know he loves me and my family and he is going to do what is best. I used to wonder about people who thought that way. I thought, how can they turn what is obviously so important over to someone that that can't see and aren't even sure has a stake in their daily life. What I realized is that when you really start to appreciate daily life and look at the little things that find themselves mysteriously fitting into place for prayerful people, God most certainly has a stake in my daily life. My Dad and Mom don't run my daily life for me, but they have a deep regard for me and how each day goes for me. They are there for me, if I only ask. God is like that for me. All prayers don't get answered the way I would like, and I used to think that that was a cop out, too. You just say, "It wasn't His Will". But when I look at the amazing things that have come from my journey, I feel partly like it is an honor to be his instrument in tightening relationships, building unshakable faith, showing the world that a marriage can be sacred, raising children to see that life is worth fighting for, and trying to demonstrate that the event that comes at the end for all of us does not have to be full of fear and panic. It can be a way to sum up what went right, what could have gone better, and pitfalls that my children can avoid because they used my roadmap. Having no faith in anything would make this a terrifying event for me, but I am at peace. If what God is giving to us freely is false, any drug would pale in comparison. The feelings that I get by reading emails from those who read my blog from around the world can't be found any other way but service to your fellow man. And this is not that hard for me. I hope that any skeptics out there can find their way to the serenity that I have found when their time approaches. It is not the screeching of the tires as the car hits the tree, it is the peaceful cruise over the next hill into the sunset.

Points of View

2011-09-23T20:36:00.002-05:00

I was thinking about how some of my postings can have very different reactions from different people. For instance, a recent post about making whatever time I have left to be relevant and meaningful struck a few as though I was giving in to this disease, but others took it as an appreciation of time being short and an opportunity to fulfill responsibility. I received a couple emails that were very concerned that I had given up the fight. It can be hard to convey very specific emotions in writing about these types of subjects. I think partly because many of those that read my blog have a very tough fight of their own. I wondered why there could be such a wide spectrum of perception about my writings and that of others who chronicle their journey, as well. What occurred to me was that many who read what I write are emotionally invested to some degree. Some are invested with me, many others with their own battle or that of a loved one. If you consider that almost everyone who reads this could put themselves on a scale dealing with loss - Denial, Anger, Bargaining, Depression, and Acceptance. This is kind of a long way to go to illustrate my point, but necessary. If someone is writing from a place of acceptance, but the person reading it from a place of anger or denial, they may have a much different perspective of the writing than was intended. This doesn't just deal with writings, but in many ways of understanding where someone stands who has an illness or a loved one who is trying to cope with the eventual loss of someone dear to them. Unless we truly walk in that person's shoes, we can't see what they see. We can't judge or criticize their dealings with a trial, when it is likely that we are not in the same place as they are. We all deal with loss or potential loss at our own pace and with our own comfort level. We can't question someone who seems to be in one phase longer than we were in that phase. It has to be enough to walk out our own trials at the pace that emphasizes the lessons that God would have us learn. Christ was the only one who could take on the pain and trials for all of us. The rest of us must be content to stand by those in trials and offer love and support. Maybe through empathy and compassion we will be able to better understand the view of our fellow man.

Times Like These

2011-09-18T03:11:00.002-05:00

My son and I went to the Foo Fighters concert in St. Louis tonight and even though I have heard this song hundreds of times, even in the context of my current battle, hearing in done live and in an accoustic setting was a great reminder.

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again

Foo Fighters - Times Like These

Peace to all of you tonight.

Brian.

MRI + PSA = : (

2011-09-10T11:10:00.002-05:00

I had an MRI on Tuesday of this week and it shows that although they have been addressing the tumors in my abdomen as 2 individual tumors, it is very likely that it is one tumor. They described it as about the shape and size of a hand. It has invaded the bladder on one end and now covers about a third of the bladder. The other end is the end that is pressing against the rectal wall. They can't rule out that the tumor has started to invade the rectal wall, as well. That could be trouble because it potentially could perforate the bowel causing me to become septic. That is a long hospital stay with lots of antibiotics, and could be fatal. They compared it to an appendix bursting. The pain has become an issue. I can still hold it off with meds, but it is controlled relief morphine around the clock and hydrocodone or oxycodone when it flares up. We thought we were addressing only pain relief, but now it seems that it would not be prudent to wait and see what this tumor does. We are fortunate in that my pain is pretty much localized to that tumor and I don't have extreme pain in multiple areas. This means they can radiate the tumor and expect some relief. The unfortunate part is that I have had radiation in some of these areas already (last year) on my right hip and it is dangerous to re-radiate, especially the bowel. They are working on a plan to find a clear path and only radiate the tumor. I should know late next week what the final plan will be. Even though we still have a long way to go, the technology is amazing. On a med note, the MRI confirmed and the PSA added the exclamation point. The PSA went to 96 again. The Abiraterone and Predisone are ineffective for me now and the doctor took me off of them. We'll go with radiation now, and pursue the clinical trial for XL-184. My best to you all!!

2011-09-04T19:36:00.002-05:00

Please remember that September is Prostate Cancer Awareness Month. If you can donate, please go to www.pcf.org and look for the "Donate" tab in the top left box. Prostate Cancer and Breast Cancer statistics are very similar, yet the funding for PC is nowhere near where it needs to be. Let's take the fight to Prostate Cancer instead of letting it bring the battle to us. Another great way to show support is to change your porch lights to blue for the month. When the neighbors ask why, let them know. Hopefully they will follow suit and donate as well. We need all the help we can get to slow this disease down. Everything helps. God Bless all of you!!!

Brian.

To explain a bit...

2011-08-28T00:49:00.002-05:00

My last post seems to have left some wondering if I had given up the fight. Nothing could be further from the truth. Even the timeframe given by the doctor is not much of a concern to me. There are as many variables as there are patients, and the doctors realize guessing a timeframe is like picking winning lottery numbers. My point was that sometimes in this battle, you know that this disease generally ends up winning eventually, with some exceptions, but you have to get some things said before it is time to say them. The wake up call for me is that I do have some important things to accomplish before I shuffle on. They all involve parenting like I am there, when I might not be. Videos and journals take a substantial amount of time, and while I have been working on them, this was a reminder that things can accelerate and I really don't know how much time I have. So it is time to get serious about serious things. Even if I went unrealistically optimistic and said 5 years, my son would be 18 and my daughter 16. There are a lot of things that a Dad needs to say to his kids after those ages. A more likely answered prayer might be 3 years, with my son 16 and daughter 14. Imagine what you might feel necessary to write or video for your children if you don't get a "live" conversation after that point. So, for me, it is time to celebrate Today, and know that I have a lot of work to do. I intend to do it to the best of my ability, and pray continuously for a miracle.

Love you all!

Brian.

Cliffhanger Resolution

2011-08-23T23:57:00.003-05:00

I know that my last entry was a bit of a cliffhanger. To clear the rest of the story, my Doctor told me that it is likely that I have a year or less to live. This is based on the short amount of time that any treatment has been effective and the mostly ineffectiveness of the last few modalities. It is truly amazing how the mental progression of this disease brings about different perceptions and epiphanies. I guess it is similar to the steps of grief. Denial can go on for awhile, leave and come back. Anger is an occasional visitor, varying in intensity. Acceptance comes, but in stages and levels. Different depths. Usually with a little depression and anger thrown in to spice it up a bit. The Doctor did not volunteer this timeline. He even added the disclaimer that he is not, nor has ever been, in possession of a crystal ball. But we did not have to push very hard to get this prognosis. So now the philisophical question of "What would you do if you had 1 year to live?" becomes a little more interesting. First of all, it is a guess. Educated yes, but still a guess. So does this even change anything? Yes, and no. No because people outlive their prognosis on a daily basis. Yes because it knocks you back on your heels enough to require a fresh look at what you are doing and when the real last day comes, was it relevant and meaningful, to me. It has to be to me because at that point, the rough draft becomes the final draft, and there are no more re-writes. So secondly becomes, if this news is more or less accurate, how does my focus narrow to lock in on the meaningful and relevant? I am a planet that revolves around my family. That means going over financial, estate planning, and funeral plans. These things are important for any family with children, but my sense of urgency to complete them has grown. The bigger part of my family's needs must be met by postings like these and the journals that I keep for each of my children and my wife. I am working on videotapes of me explaining to my children my beliefs and values that I hold dear. Sometimes the written word isn't the best way to convey the love and hope that I have for them. Or the pride and joy that glows on my face when I talk to them or about them. That is what they need more than anything that I can tell them. My love for them is so intense and strong that it glows like a thousand suns when I speak to them and teach them. Mostly what news like that does is remind us all that we have a series of "Todays". Mine may be around 365, or so. Others may have even less. Hopefully all that read this will have many, many more. It isn't about how many we have, it is the blessing and responsibility of treating it for what it is. A gift from our Heavenly Father. If I wake up tomorrow truly thankful that I walk the earth for another day with my soulmate, marvel in the 2 beautiful children we are raising, acknowledge the love, the joy, the comfort, the fulfillment, the support, and the incredible peace that comes from all of those blessings, that is a pretty amazing day. I'll take as many as I can get. One Today at a time. After a bunch of Todays has come and gone, and it is time to go, my last minute will be with complete and utter certainty, my life was relevant and meaningful.

Latest CT and Labs

2011-08-13T13:02:00.002-05:00

Well, the Abiraterone looked promising but now appears to be having a minimal effect. We will be talking to the Radiation Therapist to see if we can target the large tumor near my bladder. It showed an increase in size on the latest CT along with a number of enlarged lymph nodes in my abdomen. The doctor informed me that we will be looking at pain relief and quality of life treatments. Even though he will have the XL-184 trial in a few months, he feels that additional survivability is no longer the main, or most likely goal. He will continue to treat with whatever he can, but my lack of response to hormonal treatment, chemo, and other newer treatments leads us to the logical conclusion that we need a miracle now. I hope that we can find something to slow this train down or time will be shorter than I thought. That's all I can say today. Hope everyone understands.

2011-07-18T20:39:00.002-05:00

Even though it is still early in the process for Abiraterone and Predisone, the doctor ordered a PSA for last week. After 4 weeks on the new medicine, my PSA dropped from 98 to 63. That was welcome news. It looks like the new treatment is having an effect. We will have to see how long lasting and if it can drop the PSA even more! We went to 6 Flags today and mostly stayed in the water park since it was 95-100 degrees. The rest of the week promises more high temps. I felt good and was able to do everything I wanted to do. I am having a great summer so far and I hope that all of you are as well. I will meet with the doctor in 4 weeks with another round of blood work and a CT Scan. The hope is that we will have some measurable reductions in the tumors on the scan to correspond with the drop in PSA. My best to all of you!

Doing Well

2011-07-06T19:45:00.002-05:00

I have been on Abiraterone for about 2 weeks and seem to be tolerating it just fine. It is easier to take than Ketoconozale, even though it is similar. I take it just once a day on an empty stomach instead of 3 times daily and the Predisone that I take with it seems easier on my stomach than the Hydrocortisone that I took with the Keto. We have been to Six Flags a couple of times and have really been enjoying some active family time. I feel the fatigue a lot more than I used to, but still manage to do most of what I want. We have confined it to the water park so far, and avoided the theme park altogether. The kids will want that to change soon, I'm sure. I saw the Urologic Surgeon yesterday and he says that the stent in the kidney will cause more aggravation than help, so he is out of the picture for now. I will be back to see Dr. R, my oncologist, on July 15, but probably won't do any blood work until the middle of August. The pain in my right kidney and bladder is still there, but pain meds keep it under control most of the time. Hope all of you are having an active and enjoyable summer.

Anniversary

2011-06-22T23:39:00.002-05:00

Today was our 15th Wedding Anniversary. Amazing how times fly by. Even though we didn't do anything too special, we decided to observe the holiday next week while the kids are in camp. Not sure what we will do, but we will set aside some time for us to enjoy the 15 years we have spent together. We had a good marriage before this cancer, but it has somehow intensified our relationship into something we consider sacred. I feel the love she has for me in so much more of an eternal and spirtual sense. I feel that through this trial, our family has become one. So while I am generally not in favor of testing your marriage through serious illness, ours has prospered. On a medical note, I started Abiraterone and Predisone today. It took a couple of days to work it through the insurance. A one month's supply is $6,100. We have heard stories of copays of $3 up to $5,900. So we weren't sure what we were up against. The copay for us ended up $200 per month. Not ideal, but not a dealbreaker either. So here we go on this treatment. It has shown to drop PSA and stabilize disease so we will see. I will probably PSA test in 8 weeks and see if a CT is necessary at that point. Pray for a good response. We really need it. We are going through all of the options very quickly and have only a few left after this. All my best.

Brian.

Moving on...

2011-06-18T11:15:00.002-05:00

I had my CT Scan and Labs on Wednesday and met with the doctor on Friday. It seems that the effects of the Chemo were very short lived and my cancer has progressed. I thought from the pain in the bladder and guts that it might have and that was confirmed. The tumor from the prostate is growing further against the bladder putting a pinch on it that is pretty painful without pain meds, so I am back on the regular schedule of hydrocodone and morphine. The morphine works well, but I fight fatigue with it. No other choice right now. I go to see the surgeon on July 5th to see if there are some other options to take some of the pressure off of my bladder and other guts. The PSA came back and, while I knew it would be up, it surprised me by jumping from 14, 8 weeks ago, to a 98. That's doubling 2 and a half times in 8 weeks. So what this means is that it is obvious that Taxotere has done what it could and we need to move quickly to Abiraterone or Zytiga. Same drug. Abiraterone is the clinical name and Zytiga is the brand name. It has had some nice success for people like me. It is another hormone blocker, but this one stops the Adrenal Gland from producing testosterone and also the cancer cells themselves from producing their own hormones. Tricky little devils aren't they? It was found that the cancer cells can produce their own testosterone among many other things, including cholesterol. So that is what a cancer patient is up against. Highly aggressive, highly adaptable, rapidly multiplying. I was going to write this update last night, but I received an email that took all of the energy out of me. A man named Ted that I was in Reno with and shared experiences and treatment options with passed away. While I only knew Ted for a short time, the loss felt substantial. We sat next to each other for 2 weeks, 6 hours a day in Reno and talked about everything. He fought Lung Cancer(worked in Auto Body for many years) with everything that him and his wife Kim had. They are an example of marriage that how-to books should be written about. If you want to learn what marriage is really all about, hang around someone that has been diagnosed with a serious illness or disability. The ones that tell you that they have a good marriage are not giving it enough credit. You could not have found selfishness in Ted and Kim's marriage with a microscope. They are such an inspiration to my wife and I and I pray for Kim's strength and support. She has fallen hard because she and Ted flew so high. I will miss Ted and I hate this disease for its uncanny knack for taking the best ones.

All for now.

More tests next week...

2011-06-08T08:13:00.002-05:00

The last few weeks have been pretty quiet. I have run into a couple times when I wish I was feeling a little better, but mostly have been able to get done what I needed to. I go back next Wednesday for a CT and Labs and to meet with the Doctor on Friday. The pain seems to be present much more often as well as some fatigue, but we seem to have gotten a handle on most of it with medicine. I have been hearing from more and more people out there with different types of cancer. I appreciate the emails. I think it is good for us to know how others are making improvements in their lives, even emotional, if not physical. It is a comforting feeling to know that even though you would never wish this on anyone, you have others to lean on when you need it. Thank you so much for all of you that continue to write and/or comment!

Will let you know about tests next week!

Best to all!

Brian.

Treatment Holiday

2011-05-21T22:24:00.002-05:00

I went to get my port flushed yesterday and to get my monthly bone strengthener injection. For those that don't know, I have a port-catheter in my chest. It is like a little button that is piped directly into a main line for circulation. Whenever I have an IV, they poke a needle into it and the IV is administered through there. It keeps them from having to find a vein in my arm for an IV each time I get an infusion or have blood drawn. It was handy with all of the infusions, but I am not sure how long I will keep it in if I don't need to have infusions nearly as much. The bone strengthener used to be a monthly IV, but now it is just an injection. The port needs to be flushed monthly with Heparin to keep it from clogging and trying to clot. Gross, huh? The bone strengthener has been working really well since early on to keep the progress of the cancer in the bone at bay. I started with Zometa, switched to Pamidronate, and now get Denosumab as an injection. My moods have been up and down a little over the last few weeks and my mom had some insight into why it might be. She worked as an RN for years and said that sometimes even while you are having chemo or other tough treatments, it still feels like you are battling it with something. Once you are on a treatment holiday, one your body needs after chemo, it can feel like the cancer is free to run its course because you are enjoying the benefits of the chemo, but not currently on any medication to treat the cancer. I think that is true in my case. I am fighting it other ways also, but the conventional treatments have had the most recognizable effects. I will have a CT in 4 weeks, along with another PSA, so that will truly tell the tale. All for now. My best to all!

Brian.

Fish 0 - Dad & Brian 27

2011-05-13T20:34:00.002-05:00

It turns out that my scouting expedition on Tuesday paid dividends on Thursday. We started out a little slow, but then got into a hole where we caught keeper after keeper as quick as we could put them in the livewell. Mark Twain Lake is known for Crappie and it is spawn season, so we hit it at the right time. Even better than the fishing was the company and we had a great time on a beautiful day. It was a day well spent. Pictures are trapped on my phone. When I figure out how to negotiate their release, I will post them. I hope all of you are enjoying your spring, as well! My best to you!

Fish 1 - Brian 0

2011-05-10T17:35:00.002-05:00

I was finally able to get out and go fishing today. While I did catch a couple little ones, the fish emerged victorious today. It was invigorating to get out on the water and in the sunshine. Beautiful day, boat ran well, didn't sink, etc. It didn't really matter to me about the size of the catch today. It is just a mood adjuster to get outside and do something that I really enjoy. I will be heading out again on Thursday with a much more focused approach to my "catching" so hopefully some pictures will be accompanying the glowing fishing report! All for now. All my best to all.

Lost

2011-05-05T22:48:00.003-05:00

Sometimes I wonder if this is all real. Is the cancer real and is my life really threatened by it? I know these things are true, but sometimes, a lot of the time, it seems like a really bad dream. I am one of those restless people that are continually striving towards something. It was the reason that my family relocated more times than I care to remember, even though I would not give up any of them due to the friends that I made at each and every one of them, many that follow these writings. Lately I am caught in the middle of living and dying. I have written brave words about living, and I walk that walk most of the time, but sometimes, like now, I feel lost in my own life. Not sure if I have many years, a few years, or maybe just one or two before the buzzer sounds and it's over. I know that no one is guaranteed anything and any minute could be anyone's last. But there is an invincibility of youth and good health one moment and the next filled with phrases like, "There is no cure" and "We don't know how long you have" and " You have young children? I'm so sorry". I thought the hard part was hearing the news and the initial shock of it all before you get you wits about you again. The hard part is trying to go to sleep, after you have exhausted most of the treatment options, with images of your wife and children crying over a casket with you in it. Then the worries of have I done enough for them. To give them the strength they will need. Peace. Character. Have I been enough of a Dad to make up for not being able to see it through? Will there be enough for them to lean on when they need it most, and I am not there? Have I supported my wife enough that she will be able to get through without her companion? These are the things that occupy my mind right now. I want to have peace with them and move back to living life the way I was intended, but I am truly stuck. Sometimes the fear and anguish of these thoughts keep me from doing the very things that I fear I won't be able to do. How twisted is that? I hate writing these things sometimes and hesitated posting this, but I need to get this stuff out and I know that others that read this blog have similar trials and need to know that they are not alone, and I will not let pride interfere with that. My advice to me is to get out ASAP and do something for someone to take my mind off of me. Works everytime. Sorry for the downer. Peaks and Valleys. Peaks and Valleys.

No chemo today

2011-04-22T11:21:00.002-05:00

I went in for labs, to see my doctor, and to get my 6th and final chemo today. I told the Doctor that I had some minor tingling (neuropathy) in my right foot and some fatigue. It wasn't anything that I thought to be a big deal, but thought he should know. He decided based on the the last CT Scan that showed stable, but not a decrease, that another treatment might not prove to be beneficial right now, but could impact quality of life issues, so he called it off. If the cancer stays stable for a long period of time (6-8 months) he might re-introduce it. He feels that we have gotten the benefit we hoped for and now it is time to enjoy a treatment holiday. I will go back in 8 weeks for Labs and a CT Scan. If things have progressed at that point, we will look at a different chemo or more likely, Abiraterone. So I am on a wait and see right now. Hopefully the chemo will continue to stabilize things and we can have a somewhat uneventful summer this year. FISHING AWAITS!!!!

All my best!

Brian.

What to do when life is normal...

2011-04-17T20:27:00.002-05:00

This is an interesting development. We are in our new home. The Extreme Makeover is almost complete, just down to a few items and then tinkering. My 6th and final (for now) chemo cycle is on Friday. I have been feeling good, with just a little fatigue, but nothing that is changing my lifestyle much. I will be losing my Health Insurance at the end of the month, which seemed traumatic at first, but hopefully is worked out now. So how do you restart the normal? It seems like it has been a journey to this clinic or that, this treatment or that, and living in different places with different family members forever. Really it has only been a year and a half. And while I appreciate, really appreciate, all the family and friends that have stepped up and opened their homes, wallets, and hearts, it is so good to finally be home. I see it in my kids and my wife and I feel it in myself. I have learned so much since this began and I feel like it has prepared me for when the craziness settles down and we try to make a normal life again. As I thought about that today, it scares me a little that I don't know what to do. Good thing I have a wife and 2 kids that I can devote my time to. I love that we can focus on our family and our kids and let cancer move to the back of the bus for awhile. That doesn't mean that I can change my routine or forget about it, but it is nice to put the focus on family instead of disease again. I hope and pray that we continue to get news that keeps me at least at "stable". And I pray for those that don't get to hear that news. I feel peace today. That's good. I pray for peace for you today, too.

Latest CT Scan

2011-03-29T23:32:00.002-05:00

The PSA should come back tomorrow, but my bet is that it is in the range of where we were 6 weeks ago. The CT came back as "No significant changes to Feb 18th Scan". These are welcome words because they indicate that the chemo is keeping the lid on the cancer. It did not seem to decrease this time, but soft tissue and bones are stable as of today. I was a little surprised because I have had quite a bit more abdominal pain lately. I attribute it to the labor that we have had to do in remodeling our new home in St. Louis. The only concern is that it is not muscle aches in arms and my back, it is deeper abdominal and bladder pain that had been associated with a progressive disease a few months back. So the scan helped put my mind and my wife's mind at ease, a little, for now. Someone I know said his doctor appointments, while good lately, are like getting little 3 month slices each time the doctor says "No significant change". It is good news, but tempered with the thought of what lies over the next hill. That is why today was a little confusing for me. Undoubtedly good news, but not the exuberance of previous good news. No one knows when their time is up, and for some it happens suddenly. I feel fortunate that I have time, whatever the outcome, to try to understand this, put some things in place, and hopefully share some meaningful experiences to those that may have the misfortune to follow after me. Today, even with the good news, I am trying to accept that I have a reprieve for at least a few weeks before things progress. That is something we all fight for is a chance for a new treatment, maybe a cure, or maybe just a long enough delay to live a near normal length life. But the cancer robs the ability to live a normal life. It is many doctors appointments, side effects, pills, hair loss, injections, infusions, indignities, walking a line with everyone to maintain a regret-free existence, short term plans, etc. Those that know me will know that I am not complaining. This is my place to ponder and come to terms and decisions on where my life is and where it is going. Anyone who reads this is welcome to ride the roller coaster with me. It is meant for those going through the same thing to see this through a different set of eyes. To help, it must be honest. I am hoping that I am getting a little closer to living a "new" normal life. It has to be a balance of accepting this disease and the prognosis, and then also forgetting about it and living life the way I was meant to live it. That is like how a job goes. Put all that you can into it while you are there, but put it away when you get home. Save the best for those that mean the most. These changes are hard to figure out somethimes. Getting cancer was the easy part, living with cancer is hard...

2011-03-20T20:10:00.002-05:00

The last couple of days were supposed to be my "down" days after the latest course of chemo. The fatigue had increased with the last couple of doses, so I expected to be knocked down a little since the effects are cumulative. Suprisingly, I have felt pretty good and expect to have our home remodeling done and ready to move into by this week's end. Maybe the distraction was enough to get through it without anything major. I have been tired, but it was at the end of some pretty hard working days, so it was earned. We have been very lucky to have great family to look out after us and give us places to stay through this and a temporary home for our two dogs, Jelly and Lucky while we found a place and readied it. Our heartfelt thanks to all of our family and friends for their support. That said, there is no place like home, and we are looking forward to moving in and having our own place again. I will be getting a CT Scan on March 29th with a follow up doctor appointment on April 1. We will pray for continued results with the Taxotere and wish all of you our very best. All for now.

Had Chemo IV today

2011-03-11T23:42:00.003-06:00

I had my 4th chemo treatment today (every 3 weeks) and everything was pretty uneventful. During and after the treatment today though, I was hit by some substantial fatigue. Nothing a little laying around and a nap can't fix, but it was a noticeable change. The Doctor said after a bit the side effects don't increase in severity, but duration. So I will have another CT scan and blood work in 3 weeks to see how this treatment is going. I have also had some pain in my lower abdomen and bladder area that reminds me of when the cancer was growing before the chemo. I believe that it is due to the exertion being used to remodel and ready our house to move into. We have been working really hard and some of the physical aspects of it are things I have not done in awhile. The last CT was positive and that was only 3 weeks ago, so I truly am not too worried at this point. The last thing I will say to all that suffer from this and other cancers is to be responsible for your own treatment and stay informed, but try to acknowledge that this disease is not a car wreck that takes you in a blink. This is God's way of hopefully blessing you with a cure, but if not, Don't "Live your life like you are dying" as the country song goes, Live and love your life like you are living. Accept and deal with the trials when they need to be addressed. When nothing can be gained by living in that mess, go live with meaning. Mostly that can be accomplished by doing something for someone else to take your mind off of your issues. You would be amazed what others have battled through and won. The cancer might take your body, but don't give your mind and spirit even when the battle and the war is lost. We are meant to love and be charitable. That is what takes us out of our funk. If you are looking to help anyone, pick a prostate cancer research group. :)
B.

Birthday, etc

2011-03-01T23:16:00.005-06:00

I celebrated my 41st birthday last week and had great times with family and some friends. Nothing wild and crazy, just some low-key visits. The 3rd round of Chemo was not too bad, but the fatigue effects have definitely increased with each cycle. It only hits for a day or two, about 6 or 7 days after the infusion, but it takes me down a bit. Luckily, just fatigue and not really any nausea. We have finally bought a house. It took awhile to make the decision with all of this, but it comes down to "Get busy living, or get busy dying". I've been told that by a few people including David Emerson. They are all correct. This is a chronic disease that the outcome and the timing are all uncertain. I owe my family and myself the opportunity to live my life with meaning and purpose. It gets very tiring looking over your shoulder all the time wondering if you have the right to make long term decisions. All decisions have to have merit. So we think about things we need, make sure that we can handle whichever direction that God points us in, and get going. I enjoy the scenery much more than I used to appreciate it, but that doesn't mean I have all day to stare at it! If your life lacks purpose, find some and put it in there! Other than that, all is well. The PSA dropped from 31 back down to 13 after 6 weeks of Chemo, so by the technical view, I have responded very well to treatment. Let's hope that continues for a good long while.

CT Scan and Chemo III

2011-02-18T17:16:00.002-06:00

I had my CT Scan today to see if I was among the 45% that had a favorable response to Taxotere. Good news! The scan showed a decrease in all of the soft tissue tumors. All lymph nodes have returned to normal size. The lesions on my liver now appear to be cysts and not the beginnings of tumors. It was not a drastic reduction, but it was definite and measurable. The CellQuest and Taxotere appear to be setting the cancer back. This was welcome news and we feel that it was an answer to many heartfelt prayers, some by us and, we know, many by you. We can't tell you how grateful we are to all of you, whether you choose to comment or not. We know you are reading and sending positive thoughts our way. The hair is trying to hold on. It has thinned a lot and you can see a lot of scalp when it is wet, but thanks to the classic combover technique, it still pretty much covers my head when it is dry and brushed. Chemo was uneventful today, but it made me tired. I took about a 4 hour nap after I returned home. We met another couple today fighting Stage IV Breast Cancer at the infusion room. While I would never wish this on anyone, the silver linings to this dark cloud are undeniable. Between the incredibly strong people we have met and the strengthening of relationships of family and friends, I am thankful to have walked this path. Seems crazy, but it is true. Life is not a series of day to day activities that lead to an inevitable end. I am living life. Full of love. Full of gratitude. Full of appreciation for the people I meet and the trials that they are meeting and beating. I feel the triumph in the fight of those who battled and lost. Such grace and dignity. The best thing is that I feel. Life is full of peaks and valleys and since I don't know how many peaks I will get to see, I enjoy the view from all of them. Feeling the sadness of the valleys gives life color and texture, too. I hope to see many more peaks and valleys. I hope you can enjoy and appreciate them, too. Whether you have cancer, or not.

After Chemo II

2011-02-01T18:50:00.002-06:00

I had Round 2 of chemo on Thursday and so far, so good. I was a little nauseated on Sunday, but not bad at all. I have been working on Sarah's dollhouse and have had good energy while doing it, so all in all, I am pretty happy with how I feel. The aches and pains have been held at bay also. I will have full bloodwork done in 2 weeks along with a new CT Scan. This should give us a good idea at how the chemo and the CellQuest is working against the cancer. The CellQuest that I am taking is from a Plantain Tree extract and was used in Cuba during the trade sanctions over the last 40 years. It has had some interesting success stories. Since I am taking CellQuest, my intake of Pancreatic Enzymes is much less. If anyone is interested in the Kelley Protocol, I have several extra bottles of enzymes that I would sell below cost. They can be quite pricey, but hopefully if someone is interested, they could get into this protocol much cheaper. Just email me at brianpca4@gmail.com .
All for now!
Brian.

Lost Post

2011-01-28T14:52:00.002-06:00

I wrote this post on about December 15, 2010 in my notebook. After reading it again, there are some important feelings here that I think need to be shared, even if it is out of order a bit.

December 15, 2010

Tonight is one of those nights that I feel like I have something to important to get out, but can't put my finger on what exactly that it is. I had some pain in my lower stomach last month and was fairly certain that the cancer was on the move again. When the bloodwork confirmed that the PSA had risen from 2.8 to 16.6, I was not shocked. The Doctors increased my dosage of Ketoconozale to the maximum and the pain subsided a bit. The PSA quickly dropped to 10.7. Over the last couple of days, the pain is back, with an increase in duration and intensity. Nothing terrible. Many have had much worse, but the pain is a reminder. Kind of like an alarm clock. When you feel like you finally fall into that deep, restful sleep, the alarm blares and lets you know that your brief respite from reality is over and it is time to face it again. This particular dose of reality has not been well-received by me, unfortunately. A couple of days ago, when the pain came back, I was angry. Angry at the rug being pulled out from under my life. Angry that a long term decision in my life can only be 2-3 months in the future. Really angry that this circumstance has frozen the lives of the 3 most important people on this planet to me, my wife and 2 kids. I have always been very independent, many times traveling the road less traveled, with mixed results. I know now that there are 2 sides to me. One that people seeand one that very few people would recognize. People that know me might say that I am an "open book", but that is only partially true. I am open, but keep a part of me in reserve for my wife, kids, and family. That part of me is utterly and completely in love with my family. That is the part that gets very angry about the derailing that this illness seems to have caused them. Fortunately, my wife has the uncanny ability to pull the blinders off of me and remind me that over the last year or so, our family has grown even closer than we have ever been. We have gotten to know each other better than we might have taken the time to otherwise. I sit in amazement at the conversations I am able to have with my kids. My wife is truly the best friend I have ever had. I understand now what "ONE" means in a marriage. Don't get me wrong, we still have our battles, but we separate the issue from anything personal. The part that came after the anger of a few days ago, was the sadness at the magnitude of the gifts I have been given. Blessings upon blessings poured out upon me. Only to understand that these wonderful gifts make the loss of them so much harder to bear. But, I would not have it any other way. So I broke down a little tonight. I wondered if I had done something to bring this on or if there was a purpose I was not yet able to understand. But just like I didn't do anything to be blessed with the many gifts I had been given, I understand I did not do anything to deserve cancer. It is just life and we all get a crack at it to do the best we can with what we are given. I don't have any moral conclusions tonight. The one thing that I have learned, though, is that I am not unique and others have similar thoughts and confusion. There are no easy answers to life's tougher questions, but we don't ever walk alone. Sometimes the greater the blessings, the tougher it is to realize that you will someday have to give them up. I only pray that God sees my family the way that I do. Then I know they will always be protected.

Day before Chemo II

2011-01-26T09:00:00.004-06:00

Tomorrow will be my second chemo treatment and I have to say it has gone pretty smoothly so far. I have felt well through this whole cycle and have not had to battle side effects. They tell me that the side effects are cumulative, so as I continue through these cycles, I may have more to deal with, but we take it day by day anyway, so if it happens, it will be dealt with. On the Hair Front, it has started to noticeably thin. To just look at it, it isn't overly noticeable, but if I run my fingers or a brush through it, I end up with a fair amount that has come out. It started on Saturday and has picked up speed. I don't know if it will all fall out or just continue to thin, but if it all falls out, I'll wear a hat. I will have blood work tomorrow and see the doctor also. I am hopeful that the lab results will correlate to the way I have been feeling, and my PSA will have dropped. I will update that part in a few days. A couple other things, please say a prayer of thanks for my good friend Sharon B. in Salt Lake City. She knows that this trial could have been much harder if not for her willingness to help us. She is very much appreciated. Also a prayer for my friend, David E, who fights the same battle. He is an inspiration and at a crossroads in his treatment. I wish him all the best that I can for him and his family.
B.

Day 11 after Chemo

2011-01-17T13:39:00.002-06:00

Probably seems like a little overkill updating the uneventful, but for one, I'm very glad it is uneventful. So far I have felt really well. Better than even before the chemo. I would compare it to the pain that I felt before I had radiation on my hip last summer. Lots of pain before, and relief pretty quickly after the treatments started. This is kind of like that. The second reason is that I want to journal how it went for me at various stages for anyone else that needs to decide on this type of treatment. All of us are different, so I am not sure what anyone else's experience might be, but on Day 11 after the 1st treatment, I am pretty happy with the present direction.

Chemo status

2011-01-11T11:50:00.002-06:00

My last post said that the low point was Days 3-5 after the chemo infusion, but it looks like the "Nadir" or low-point of the immune system is days 5-9 after the infusion. That would start today. So far, it has been a non-issue. I feel a little more fatigue today than the last couple of days, but still better than I did before the chemo started. I told my wife before chemo that I just did not feel good and hoped that I would feel better. My prayers were answered. I have felt more like myself since the chemo and steroids. There has been no hair loss, yet. They say that that usually happens 3-4 weeks after the first treatment. My luxurious locks are yet intact. I would have to say that, so far, and we are early in yet, this treatment is better tolerated than some of the oral medications and IVs that I have had so far. Other than that, things are peachy. We are staying with my Brother, His Wife, and their son. It has been a huge blessing to stay with such giving people. Before that, we were lucky enough to stay with the same Salt of the Earth type people like my Mother and Father in Law, and before that, my Mom and her husband. This has been going on for over a year, and we continue to be blown away by the generosity and actions of family and friends. Our Christmas at my Dad and his wife's home invited cousins, aunts, uncles, etc that were great to visit. It is such a shame to have to put up with cancer to recognize the true blessings the beautiful people around you! We are truly blessed and loved. And we love them all right back!!!

Chemo started today

2011-01-06T15:32:00.002-06:00

I had my first chemo treatment today. They have this stuff down to a science. I have not had any nausea, but they dose you up with steroids at the time of infusion, so you feel pretty good. The true test is days 3-5. That is when your immune system is at it's weakest and you feel the fatigue. The fatigue is cumulative, so it will increase as I go through more cycles of chemo. Right now the plan is 4 cycles and we hope to see some good results after 2 or maybe 3 infusions. It generally works on about 45% of patients. While that does not seem high, it is much higher than other treatments. We are continuing to work with some alternative treatments in conjunction with the chemo, with the guidance of our doctors. We are blessed with some open-minded professionals. I will write more about the effects of this treatment as they present themselves in the hope it will help others in their decision making. Thanks to David E at The_Big_C for all of his insight into my decision to have chemo. His blog is linked at the right and indispensible for all those with cancer, especially but not only, prostate cancer. By sharing this information, we can find real answers.
My best to all!
Brian.

2011-01-01T01:52:00.002-06:00

After searching for treatments and working with several doctors, we accidently stumbled onto a really good one. My regular oncologist informed us that they had just hired a Urological Oncologist that used to head the department at a very good University Hospital. She said we should meet with him and consider transfering care. We met with him on Thursday and were very pleased with his knowledge and demeanor. I had a bone scan the same day so we went over the results and were glad to see that the bone mets were stable. We discussed the CT scan and he was concerned about the progression in the soft tissue. My PSA also had doubled from 15.3 to 31.1 in just three weeks. He feels that chemo is the only real option right now. I will also see a Urologic Surgeon next Tuesday to talk about a stent in my right kidney. It will probably be needed at some point, but we have to weigh the greatest priority, the stent or chemo. It the priority is chemo, I will begin treatment on Thursday, January 6th. It will be every 3 weeks for 4-6 treatments. I'm not really nervous about it and I hope it will alleviate some of the symptoms I have had lately.
As we start the new year, I have only 2 resolutions. I will always pray for a miracle, but never forget to live each day as best I can and those that I love will never wonder about it.
Brian.

2010-12-21T14:13:00.003-06:00

The CT Scan results are back and they are a bit mixed. The lesions on the liver and lung are still there, but unchanged. The enlarged lymph node near my right lung is still slightly enlarged, but has decreased a good amount. Those were the good parts, and they are definitely good. The not so good part is that the disease is progressing. The bladder wall has thickened noticeably from the prostate and the tumors have grown up to and possibly into the rectal wall. The increase in tumor size has caused hydronephrosis and hydroureter in my right kidney. This can cause infection at the least, but can lead to long term severe damage if left untreated. The solution is to have a stent surgically implanted. This is a pretty standard and routine procedure, so I am not overly concerned. I have had some significant nausea, lower back pain, and abdominal pain over the last 2-3 weeks, so this pretty much explains why. The concerning part is that the cancer is growing in multiple areas and at a fairly signnificant rate. I have discussed this with my Doctors and the consensus seems to be chemotherapy. There is still a possibility of doing another hormonal treatment first to stabililze the cancer for 2-3 months, but that would mostly be to get the logistics of a 4-10 month chemo regimen in place. They would not expect any long term changes to what would need to be done. I am still working with some alternative treatments. I am not sure if they are slowing it down or not, but we will continue to battle with everything in our arsenal. I pray, much more than daily, for healing and I hope that it is God's will that it happens. Until it does, we will do all we can. I pray for a peaceful and joyous Holiday Season for all of you.
Brian.

I am beginning to hate Roller Coasters...

2010-12-11T19:07:00.002-06:00

Well, the PSA came back this month. It is up from 10.7 to 15.3 in about 3 weeks. That seems to indicate that the increase in Keto and Hydro did not work and we are on to the next option. Those options would include DES (an estrogen based hormonal therapy) or Chemo. Some have had success with both of the treatments, but the duration varies, so we will just have to give it a try and hope for the best. I will be discussing these options with the Prostate Oncologist in LA this next week and will see if he agrees that it is time to move to the next. At our consultation, he seemed to think that Chemo was the next best option. I am still continuing to pursue Provenge, but that is a process that will take awhile to accomplish. I will also be having a CT scan done on Dec 17 to see if the cancer is progressing. The pain associated with the rise in PSA would lead me to believe that it is. Hopefully, only in small increments. I will update again after the CT. Thoughts of Happy Holidays to you and yours.
Brian.

2010-11-26T14:17:00.002-06:00

The increase in the Keto and Hydro dropped the PSA from 16.6 to 10.7 in 1 week. That is good news that there is still a strong response to the Hormonal Treatment. The longer we can get this to work is more time before we have we need to switch to something else. Yesterday was 1 year since the Bone Scan confirmed the spread of the Prostate Cancer to the bones throughout my body. 1 year later and I seem to be doing pretty well overall. The PSA has been mostly controlled with some ups and downs and the pain has let up since the radiation. I believe that we are holding our own and hope that continues for a good, long time. I hope Thanksgiving was good for all of you. This fight definitely reminds me of the things that I am most thankful for.

New PSA and stuff

2010-11-16T23:48:00.005-06:00

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

2010-11-03T15:02:00.000-05:00

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

2010-10-11T14:23:00.000-05:00

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?

2010-08-27T22:02:00.004-05:00

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...

2010-08-13T22:49:00.002-05:00

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?

2010-08-11T22:44:00.001-05:00

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!

2010-08-04T15:57:00.002-05:00

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.

Finally!

2010-07-02T21:06:00.000-05:00

Good news. Finally. I had my Bone Scan and CT Scan today along with radiation. I was able to get my results on the CT Scan and it showed a decrease in the area around my bladder and prostate, a shrinking in the lymph nodes, no further activity in the bone, and no change in the nodule on the lung and liver. The liver lesion is now noted as a low-attention indeterminate lesion, which according to this test, is most likely, not cancer. It still could be, but is less likely. This is compared to the scan 3 months ago. I was on Casodex the first month of that, but after, only Lupron and the Pancreatic Enzymes from the Kelley Protocol. It is still too early to determine if the enzymes were the cause of the static condition, but it is great news that it has not progressed in the last 3 months. I appreciate all the thoughts and prayers and believe that it had a great impact on my recent scans. Thank all of you very much! We will continue on the Enzymes and the juicing in hopes that we can continue our progress. We are on the move again to Teresa's mom's place in Libby, Montana. She and her husband, Bruce, are building a Yurt. Look it up, it's pretty cool. It is like a round heavy duty canvas cabin. We will be in closer proximity to Huntsman Cancer Institute in Salt Lake that has the newest treatments for Prostate Cancer. My Mom and her husband, Mack, have been very gracious hosts to us over the last 3 months and my brothers, sister, Dad and his wife, Linda, have been awesome. They have made a way to accomodate every need and it will be difficult to leave them again, but we are confident that this will be the environment and the location we need to finally get in front of this thing. We will be leaving in about 2 weeks and will continue to post from there. It is hard to keep moving, but our flexibility is our friend right now. I will have the PSA and final Bone Scan report next Wednesday. Fingers crossed for results confirming today's good news.Brian.

No Pain!

2010-06-27T12:40:00.001-05:00

I started radiation on Thursday and had a lot of pain Thursday, Friday and Saturday. I spent much of each day in bed. I don't know if the radiation made me so tired, if it was the pain, or the pain killers to alleviate it. Today, I woke up and felt much better. The pain in my hip is almost non-existent. It hasn't felt like this in weeks or months. Funny how the absence of pain makes you so happy. I took that for granted for a very long time. I am hopeful that this is a new and on-going development and not just the eye of the hurricane. I think we will do something as a family today and get out of the house. I had to reschedule my bone scan and ct scan for Friday July 2, so we will see how that goes next week. I hope all is well with all of you and my prayers are with you. I have posted a new writing on the tab above today for all that are interested titled Acceptance and Humility.
All my best.
Brian.

Today's Doctor appointment

2010-06-15T19:16:00.001-05:00

Back to the oncologist today to discuss the latest blood test results. PSA has risen to 13.7. This was after being on Casodex for a month and then off of Casodex for a month on withdrawal therapy. The cancer seems to be completely Hormone Independent. The next step will be to search for the availability of Provenge. This is the newly FDA approved Prostate Cancer treatment. It is only offered in a few places and generally has a waiting list. Once we find out if I can get this treatment, I will go on Ketoconozale with Hydrocortisone. I can’t do these at the same time, so I will only do the Ketoconozale if I have to wait on the Provenge. The next step would be Chemo. I will see the Radiation Oncologist tomorrow to map out radiation treatments for my right hip which has grown increasingly painful over the last 2 weeks or so. I also will get a Bone Scan and CT Scan on Thursday and hopefully will have preliminary results on Friday. Say a prayer that the “indeterminate” spots on my liver and lung are unrelated and have not changed or grown. Those are big concerns. We will continue to search and fight. I am still working with the Kelley Pancreatic Enzyme Therapy. We will add some of the juices from the Gerson Therapy, also. Some may call it denial, but it is only denial if you quit fighting and hope you get better doing nothing. We are hoping for big improvements, by working hard. Hope all is well with all of you.
Brian.

Why I Try

2010-06-11T10:56:00.002-05:00

Through this treatment of cancer, it is always interesting to talk to and correspond with others going through similar trials. For every patient, the treatment varies slightly. Even though conventional treatments for cancer follow a well defined and researched path, patients always put varying degrees of emphasis on spirituality, diet, nutrition, supplements, attitude, outside support, etc. What also seems to vary is the desire to fight and the reasons for it. Some that have lived a long, full life may have an acceptance of their disease that others, stricken at an earlier point in their life, refuse to acknowledge. With 2 young children and a dear wife trying to juggle these seismic changes, I put myself in the latter category. Some diagnosis, regardless of age, are so dire that it leaves few options but to “put your affairs in order”, hope for the best, but prepare for the worst. Again, while I am not having much fun with my diagnosis, I do have the luxury of options and time. Time to reflect. Time to research. Time to repair. Time to Fight. It is too simplistic to say that I fight for self preservation or fear of the unknown when this life is done. Of course, those things are true. My faith allows me to worry a lot less about life after this one, but it also teaches me that this life is precious. Something to be defended and protected. I think the biggest reason of “Why I Try” is the love that I have for others and the love that they have for me. If the last example I can leave for my children is that I would not give up, not doing as I say, but do as I do. Sometimes the victory isn’t always only in the outcome, but the dignity, grace, and valor of the battle. I want my children, my wife, my family, and my friends to know that I love them enough to fight with every ounce of energy to win this war and remain with them until God calls me home, not just until it gets too difficult. The love and support given to me give me strength to try new treatments, as alternative as some of them are, because if there is a chance, I owe it to myself and all of you to endure to the end and make this life all it is supposed to be. When my time is up, I will know. It’s not my time. That is why I try.

2010-05-26T10:05:00.002-05:00

Its been a little bit since I've written. Since my 40th Birthday "Surprise" Party, I had to fly out to Salt Lake for a couple of days and then we went to Florida for a week to visit some good friends and do a little fishing before the dreaded oil slick makes it's way around the state's beaches and reefs. All of us were able to catch up with some great people that we truly miss from our time there. We have kept ourselves busy and so far, I seem to be holding up pretty well. The party was a great success and meant a lot to us. It was so nice to see family and friends, some that I had not seen in quite a long time. I thank all of you from the bottom of my heart for taking the time to be a part of that celebration. It meant a lot to me to visit with all of you.
On the treatment side, the PSA continues to climb and went to 9.9. This was up from 7.7 only 2 weeks prior. The doctors decided to stop the Casodex that I was taking. Casodex works with the Lupron to eliminate testosterone production. It primarily targets the adrenal gland production. By stopping it, they hope to confuse the cancer and slow it's growth. This works in some people for 1-3 months. If it does not work, or when it stops working, we will be on to secondary hormonal therapy. Chemo is still in the picture, but we will try other things before we get to that. The new treatment, Provenge, will likely be tried before we get to Chemo, as well. We were looking at radiation on my right hip, but it surprised me by not hurting nearly as bad as I thought under a good test of fishing and playing golf in Florida, so I hope to keep from going through that until winter. We continue the dietary restrictions and Enzyme Therapy, but won't know for a few months about the results. If my energy and lessening of pain are any indication, the results are very promising! Sorry again for the long break in updates. We intend to enjoy every minute of this summer and sincerely hope that you will all do the same.

All my love,Brian.

New Spin off Blog!

2010-05-08T11:47:00.002-05:00

I have been writing some things for my kids lately that talks to them about what I think is important in life. Some that have read them have told me that these writings may benefit others as well. Since it would be hard to manage this on the same blog, I will be posting them on a sister site, http://allthatiwantforyou.blogspot.com/ . It is also listed as the first link on this site. It will just be essays of these writings as I put them on paper. I hope that they will assist some of you that travel the same or similar path as I do. My intent is not to be preachy or all-knowing. It is just to let people close to me understand my thoughts on important life issues.

As always,
thanks for reading.
All my love,
Brian.

Chicago

2010-05-04T08:39:00.003-05:00

Teresa and I went to Chicago last weekend to see a Cubs game. I have been to Fenway and old Yankee Stadium with my brother Greg, but never had seen a game at Wrigley. We had great seats and it was a lot of fun to see that stadium. I also made it out to see Mark Knopfler (former lead singer of Dire Straits) with my buddy Dave. It was a great show. Dave and I used to see every major concert that would come through St. Louis, but hadn't seen a show together in 20 years. Both were a whole lot of fun! I still firmly believe that we can beat this thing, but I know it is a difficult path. That is why I stop and smell the roses, or see the concerts, or even go to see a Cubs game that the Cardinals are not playing in. Procrastination doesn't work for me anymore. If the opportunity arises for something I have always wanted to do, within reason of course, we find a way to do it. We are in the process of switching up our treatment plan. I have an appointment with the Oncologist today followed by a Pamidronate infusion for the bones. This will factor in to where we are headed, but we are already starting to pursue an enzyme therapy that is showing good results for others. Nothing else is working, so the search continues. We feel good about this approach and, while there are never guarantees, we believe that I can be healed. We just need to align a few stars and planets. This treatment can be found by googling Dr. William Donald Kelley or the Kelley Therapy. Dr. Nick Gonzolas uses a similar one in NY, but this is the original and the real deal. We will also add the juicing of many vegetables to this for an assault of good nutrients and enzymes. The idea is to put my body in the strongest position to fight. The Kelley enzymes remove the protein shield from the cancer cells allowing it to be recognized and attacked. We are also praying very hard right now. Spirits are generally up, along with the pain in my hip and back, but many others have been stabilized or healed. No reason to think I can't join in the fun. We will also talk to the doctor today about Provenge. Some of you have sent emails about this newly approved treatment and we are excited about it, too. Unfortunately, it only provides a delay of about 4-6 months, and not a cure. But if we can use this delay to allow other treatments time to take hold, maybe we can spin it into a real miracle. I will post tomorrow about the results of todays appointment. As always, take care. I love you all and will post soon.

PS - For those interested, the News and Exciting Developments tab of this blog have an invitation to a party on Saturday May 8. Any and all are invited. I hope some of you can make it. Just email an RSVP to brianpca4@gmail.com.

B.

2010-04-25T15:19:00.002-05:00

Last week was a little trying. The residual effects from the surgery continued to make it difficult to sleep and generated a fair amount of pain. The pain killers worked pretty well, but made me very tired. The last couple of days has been much better. The pain is letting up and I slept really well last night. I still have the pain in my hip and back. Sometimes it is a dull ache, but other times it can be an uncomfortable stabbing pain. Fortunately, for now, it is of the dull variety. I did get out yesterday and did a little fishing in the rain. Didn't catch anything, but had fun anyway. The distraction and reduction in pain helps my mood and view dramatically. I will go back to the doctor tomorrow to follow-up on the surgery. I expect that things will go well as the symptoms have decreased alot lately. Then on May 4th, I go back to the oncologist for blood work, etc. I will have to talk to her about the direction we will go for the advancement in the bones. Hope all is well with all of you. I will post more early this week.
B.

Bone Scan

2010-04-20T23:36:00.000-05:00

We finally received the bone scan comparison and it is not as good as we hoped. The cancer in the hips, sternum, and spine has continued to grow and spread. It has moved into my right femur as well. We are looking at a few options and will know more soon. Sorry for the brief update.
Brian.

2010-04-11T03:49:00.000-05:00

Little bit of a whirlwind over the last week or so. We met with the Surgical Urologist on Monday April 5th and he recommended a procedure called the GreenLight Laser. It is usually for Enlarged Prostate to alleviate constricted urinary symptoms. We decided on Wednesday April 7th. I went in to Barnes-Jewish Hospital early on Wednesday and the procedure went well. The Prostate wasn't as large as they thought it might be, so there wasn't as much roto-rooting as they planned. Kind of a good news, bad news thing. The tumor has spread to the bladder and looked like an enlarged prostate, but really it is just one area encompassing both. They used the scope to determine that the cancer had not penetrated the bladder wall from the outside in (good news). The biopsy on that tissue should come back early this week. I ended up with a catheter and had to spend Wednesday night in the hospital. Miserable. I was very happy to be paroled the next morning. It stayed uncomfortable for the next few days, but seems to be getting better each day. I am writing this at 3:45 am because my hip and back pain have returned and even with the pain meds, I can't sleep. I'm hoping this is a temporary problem. I did receive the Lupron injection on Monday April 5th and will know in the next week or so if it is helping or not. Also scheduled for a bone scan on Monday April 12th. The CT Scan said that it looked like the bone mets had increased so the bone scan should answer that definitively for us. A prayer or two on that one would help. Things seem to be settling down on this treatment, but that test is a game changer if it isn't good. All for now. Hope all is well with all of you. Will post bone scan results as soon as I know.
Brian.

Maybe good news???

2010-03-31T23:21:00.000-05:00

I talked to the Nurse today and she said the comparison on my latest CT and my baseline CT was complete. There is some thought that the tumors in my prostate and the lymph node involvement in my pelvis may have decreased from the baseline. But, the CT seems to show an increase in bone mets and confirmed bladder intrusion and lymph nodes. She said we really need to wait for the bone scan on April 12th because it is like comparing apples and oranges on a CT to a bone scan. To me, this might suggest that the liver lesions and the lung node may have been there last November, since the abdomen and chest were not done then. If the other stuff decreased, I don't think the liver and lung would progress. But not sure about that one yet. I will see the Doctor again on April 5th. We were just happy to get a test result that might be good instead of another one that wasn't. I re-started Casodex yesterday and will test the PSA in about 2 weeks to see if it is working. If not, we will move to DES or Ketoconazole and Hydrocortisone. These are hormonal treatments that have been around for awhile and continue to work well for some people. We are also looking at a new drug called Provenge. The Doctor is trying to deal with the treatments with the least side effects first. As we go up the ladder, the side effects increase. After these treatments we will likely be looking at chemotherapy. All in all, I choose to look at todays news as a good sign. One of the first in awhile. We continue to look for more and pray for ourselves, all of you, and all who struggle with this disease.

Thank you for your thoughts and prayers!
Brian.

CT Scan and Blood Test

2010-03-30T18:24:00.000-05:00

Well, if 3 tests makes a pattern then Houston, we have a problem. My PSA tested at 6.9 and has been steadily climbing for the last month. I re-start Casodex today and hope for a bit of a reprieve. The CT Scan results were also less than encouraging. Lesions were noted on my Liver and a nodular tumor was seen on my lung. This may have been here all along, as we did not have an abdominal and chest CT the first time around. They will know more in 3 months when they can measure whether it grows or shrinks. Either way, they will call it officially cancer. If you have never seen a grown man fighting tears in front of a Pasta House Restaraunt, you may have missed a golden opportunity. Between my testosterone at 7 from the Lupron and this nonsense going on, its a wonder I'm able to hold it together at all. My Dad is picking me up tomorrow morning for a Father-Son Fun Day. I don't know if I have ever needed one more. My friends, family, and new friends that I have met from this are the reason that I continue to keep myself together enough to keep looking for new solutions. As much as we look for creative solutions to battle this disease, we have to find new angles to pick ourselves back up, dust off, and fight some more. It wears on you. I realize now that cancer doesn't just steal time and take people too early, it tries to steal the time that you have by being an all consuming beast that won't let you live the life you still have. We continue to soldier on and are very thankful for all of the blessings that we have been given and wish all of you everything that your heart desires and pray for health, happiness, and love for all of you.
Brian.

What to do?

2010-03-26T22:35:00.000-05:00

The last few days have been tough for us. My last couple entries have been a little clinical, because I don't know what to do. I have read about a few people my age with Hormone Refractory Prostate Cancer and they have battled and continue to battle this disease with every weapon in the armory. I intend to do the same. I won't and can't give up. That doesn't mean I don't feel despair sometimes. Lately, I do. The hormone therapy was supposed to buy me some time, but now appears to have run its course. My wife and I attempt to comfort each other, but lately, we are not sure how to comfort each other. We are both trying to fight this in different ways. She feels helpless to stop this speeding train and does not want to be left alone. I am not sure how to comfort my soulmate who may end up pulled away from the one she loves. How do you tell her it will be okay, when at least for awhile, it is possible that it won't? How do you tell her to keep the faith that we have worked so hard as a family to cultivate when her heartfelt prayers go unanswered? How do you convince her that our small family needs her more than ever? How do you assuage her unfounded feelings of guilt that something could have been seen, a sign missed, that would have directed us down a path towards earlier discovery and healing? I suffer with advanced cancer that could end my life much earlier than I ever expected. My wife suffers with the possibility of losing the person that she wanted to spend the rest of her life with, not just the rest of my life with. I want her to know, and maybe some of the other spouses of cancer to hear, that my heart breaks for her pain. I want her to understand that now is the time to build memories, no matter what the outcome of this is. We have the benefit of looking at life as a tangible, finite phenomenon. Something to be cherished and enjoyed. The most important things are not the things, but the experiences that build the memories. I keep this journal for her and my children. It is possible to fill their hearts and souls with meaningful memories, even in a shorter time. The quality of our time together has to be enough. Rest assured, I in no way, will be satisfied with quality. I want quantity, too. But I know that it is not guaranteed for me anymore. This has to be a collaborative effort. Neither of us can do this alone. Her faith in God fulfills the promise that we have made to each other and to God that our family will be sealed and will always be a unit, even beyond our time here. Her love for our family has to be sufficient to show our children that my love for them is eternal and will last even if my physical body cannot. Our children are a beautiful product of the love we have for each other and will always have for each other. If one of us doesn't get to stay and see it through, that will never change. Our Father in Heaven's love is forever, and we are made in his image. We have the advantage of hindsight in our treatment and diagnostic choices in this journey. The downside is that it is easy to reflect on choices made, and wish that you had chosen other paths. There is no benefit in that, other than to lend the experience to others to aid in their decisions. My wife feels responsible for some choices made. I have never questioned her love and devotion to me from the first time that she told me that she loved me. How can I even consider that any decisions that we made together or information that she presented to me were given with anything less than that same love and devotion? There are no second guesses here. You take the best information at the time that you need to make the decision, and you make the decision. I have no regrets. I love my wife and have complete confidence in her. She does not have an ulterior motive in her whole body. I trust her with everything that I am, everything I will be, and even what I may never have the opportunity to be. The best decision I ever made was made on June 22, 1996.

New Developments...

2010-03-23T09:07:00.001-05:00

Last couple of meetings in Salt Lake and then we are heading back to St. Louis tomorrow. I had an appointment at Huntsman Cancer Institute on Friday for a follow up Lupron shot and blood work. My PSA had risen to 3.2 from 2.14, but we were hopeful that the Lupron shot would knock it back down since we thought we were due for one. Unfortunately, I had received the 30 mg shot, which is a 4 month dose, instead of the 22.5 mg shot, which is a 3 month dose. So my PSA was rising after 2.5 months on a 4 month injection. Not a great sign. So I did not get the shot, but they drew blood for testosterone, PSA, and Alkaline Phosphotase. Alk Phos was good at 65, and testosterone was at 7, so Lupron was working fine. The bad news is that my PSA had risen again to 4.9. This indicates that I am likely hormone refractory, which means that the cancer is growing independent of the testosterone. I will follow up with doctors at Siteman Cancer in St. Louis, but it is very likely time to look at new options. I knew this would happen eventually, since the Lupron is a temporary remission, but I thought I would get closer to a year instead of 2 or 3 months. This is a very aggressive cancer. We are doing about as well as could be expected with this. Still putting one foot in front of the other and always one day at a time, but I feel like I am on a speeding train with no way off. It only takes one piece of good news to break this pattern of tough news, and I am ready for it. I need it to warm up so I can go fishing.
Love always,
B.

Leaving San Diego

2010-03-18T00:35:00.000-05:00

Tomorrow we head back north for a few days and then east. I finished the clinic part of the treatment on Friday, tied up some loose ends on Monday, and will be leaving. It is too early to determine the success of this treatment and I will continue to give myself IVs over the next 2 months in anticipation of my follow up. Dr. Munoz seems to think we are on schedule, but we will know more after the treatments have had a chance to show, through the labs and scan results, where we are. I have met so many great people here. Some of them have gone home already and some continue to be treated. It has been a source of inspiration to me when I needed it most. Sadly, we had a dose of reality while I was there, also. A man named Bill who had advanced Liver Cancer passed away at the hospital in Tijuana while I was in treatment. I didn't get to know his life away from cancer much, but he was a "Comrade in Arms" for about 2 weeks while I was there. He had a great family and I know he will be missed by many. I will miss many that I met there and I won't name them only because I am sure I would forget one, due to my memory and not their impact, and they are too important to me to take the chance. My next step will be to Salt Lake City (Huntsman Cancer Institute) for a few days to renew the acquaintance between Lupron and my backside. Then, off to St. Louis where we will take up residence in my Mom's basement. We have spent a lot of money working to overcome this and need some time to get back on our feet. I thank my Mom for the accommodations. I am not proud that we need to start over again, but grateful that I have family that will help us. My wife says that some people our age get divorced and start over and that we are divorcing cancer. That thought has helped me transition into some of these changes. I am telling you about this because I don't want others to put pride before treatment. It is a hard thing to do when you are used to living your life on your terms, but the hardest thing for me is to allow others to help me. If you are in a similar circumstance, please allow others to help you get strong. My goal is to use this experience to help others. That is why I share everything I can, but just like on the airplane, you have to put your oxygen mask on before you can help others with theirs. I will write more when I can, as we are traveling. But please know that all of you are in my heart and mind, always.
B.

Treatment Update

2010-03-09T19:42:00.000-06:00

We met with Dr. Munoz yesterday and if all goes according to plan this week with my blood tests, I will be finished with the treatement here and taking IV treatments home with me. I will keep the port in my chest until I no longer will need multiple IVs daily. The blood work looks great and he is convinced that I will be in full remission in 3-4 months. Staying there is the wild card. He has had great success of keeping people in remission when he can get them to it, but many factors play a part. This is just how my life will go from here, but I will absolutely enjoy it. This week we will practice mixing the IVs and administering them with the nurse's supervision so we are ready to take them home. We will not go directly back to St. Louis as I am working on some things that I will post about later today or tomorrow. Very good things that will be a part of our life to come. Not to be mysterious, but I need to explain it correctly. We have loved the people we have met here and will stay in touch with many, but it is definitely time to move on to the living part of life again. There are some who live in the San Diego area that have reached out to us and I apologize for not being able to get to some of you, but know that your thoughts and offers of help are greatly appreciated. I always feel that I will have more energy and time to take them up on these offers, but the limited time after treatment flies by with some of the other things we have going on. Right now, I am very happy with the treatment and direction and am starting to understand how things will go from here. I am very excited to begin this new chapter and appreciate all of you more than you could ever know. Between those of you that I speak to on the phone and others that express you thoughts here, this experience has taught me more about what is important than any other time in my life. I hope that it has helped some of you see things a little differently, also. All my love to you and I will talk to you again soon!
Brian.

Treatment going well

2010-03-04T22:51:00.000-06:00

It has been a week since my last entry. Sometimes it seems that not much is happening, while at the same time, change marches on. Teresa and the kids arrived on Monday night. It was great to have our family back together again. I knew I missed them, but I realize how much when they are back with me. I think their return is pushing me into the next phase of this "Life Adjustment". I think at first it was shock, then despair, then anger at the cancer, then a brawler attitude that made me want to lash out and kick its butt. Now, as I push through this initial treatment, I am moving towards trying to figure out what I will do with myself in the "New Normal". Will I work? What work will I do? What will the change in priorities that something like this causes do to impact my family's future? On one hand, I fully embrace the new perspective that I have been given, on the other, I miss the life that I had to leave behind. Most of the time, I feel like I need to hold on to the things that cause positive life changes and put the rest of the crap on the shelf for awhile. I'm not angry at it, I am just ready to move on and live my life. There are definite positives, including the people that I have met through my blog, and I choose to dwell on that. When we leave San Diego, we will moving back to St. Louis. The truck is loaded and on its way. It will be great to be near my family again, just as it will be painful to leave family and great friends in Salt Lake. This is a time of great transition for us. Starting over again, but with a new set of rules. I feel a lot like this post today. Happy with the overall progress, but disjointed and out of sorts with some of my current situation.

PS-Birthday Stuff

2010-02-25T22:16:00.000-06:00

PS - I added a picture today. When I walked in about 11 am, I said hello to everyone and they said hello. I found a chair that mysteriously was empty, even though the room was packed. I sat down and they hooked me up to the IV and everyone started blowing whistles, really loudly! Then about 30-40 of them started to sing Happy Birthday and brought out a big cake with icing balloons on it. We, of the Sugar Resistance Movement, only took tiny slivers, but the family and staff ate the cake up. It was a great birthday surprise from some really good friends. Special thanks to Ron and Elssy for getting the cake and setting up the clever ruse.
B.

Big Day Today!

2010-02-25T08:43:00.000-06:00

While I never thought that my 40th Birthday would be celebrated by IV’s and injections, I don’t think it is a bad thing. Not only investing in what we hope is a very lengthy remission, but also if I can’t celebrate with family and other friends, the people that I have met here and in Reno are the closest thing to it. Their positive attitude and spirit help me to see light at the end of this tunnel. The focus that these people have in being able to now set aside the trivial and lock in on their treatment and what is important in their lives has taught me as much as I have learned medically about Prostate Cancer. There is a right way to live your life and they understand it. I have told some that I am not emotionally mature enough to be able to call this cancer a blessing, but I can easily recognize the blessings that have come from it. Most of the blessings read this blog.

Last year I wondered what it would feel like to turn 40. I thought at the time that it was just turning another page, albeit a thicker one. I did think on some level that it was a milestone and I felt that some part of my life had passed, never to return. So while I wasn’t necessarily feeling my mortality, I felt that I was progressing into an older, not necessarily wiser, stage of life. It made me feel how quickly my life moved and amazed me that I have an 11 and 9 year old, and have been married over 13 years. As I look at what this 40th Birthday means to me today, it is very different. I thank God that I have been able to do the things I have, watch my children progress from infants to very distinct personalities, and to get to know all of you. I don’t worry today about my age or growing older. I pray to walk Sarah down the aisle. I pray to see John take a wife. I pray to see grandchildren. I pray to grow old with my wife and kick kids off of my lawn. I love my life today and getting older isn’t a curse. In short, I pray for the opportunity to grow much older. Every positive test result gives me hope that I will do just that. I believe in this treatment and this doctor and see positive results daily in many of my friends receiving treatment.

On the medical front, I found out that my sialic acid is very high (190), as to be expected. This would indicate that there is a large amount of cancer in my body. But I knew that. The PSA and AlkPhos seem to show that it is not very active right now due to the Hormone Blocker. This was drawn before treatment started, but takes about a week to culture the sample and get the results. I will be receiving the Neo-Springer Vaccine (See Link under San Diego Clinic, Treaments) on Monday.
Explanation of Sialic Acid –
Carcinoma cell (cancer cells) are covered with Sialic acid (which also serves as a carcinoma marker for diagnostic purposes) and this helps hide the cancer from the immune system. Sialic acid is not particularly immunogenic.
T/Tn antigens (Neo-Springer Vaccine) covertly attach to immunogenes in order to induce an immune response. The body then goes after the cancer with a vengeance.

I will be meeting with Dr. Munoz on Saturday and hope to get the rest of where he thinks we are headed with treatment, now that he has seen all of the baseline bloodwork.

Thanks for reading and humoring this newly 40 year old!

Brian.

Let the Games Begin!!!

2010-02-24T09:31:00.001-06:00

Today I will begin a new phase of my treatment. I will start the Dendritic Cell Vaccine/Immunology. To say that I am excited about this would be a huge understatement.

Here is the description of the Dendritic Cell Treatment:

Dendritic cell vaccine - this autogolous vaccine (vaccine from patient’s own blood) isolates the dendritic cells which are then cultured in a lab and trained to identify cancer cells. This process stimulates the immune system and NK cells to destroy cancer cells.

You can Google this treatment, also. It has undergone clinical trials in the US and has been awaiting its final approval from the FDA for over a year. (Snide comment)

Up to this point, we have been strengthening the bones and building up the immune system, but this is where the work and the fun begin. My treatment will not include chemo, so overall; I should feel pretty decent through this. I will continue Hyperthermia each day this week and then go to 3 times per week starting next week. Next week we will add some of the other treatments to the regimen, in addition to continuing immune system strengthening.

There is a man here with Colo-Rectal cancer that was told that there was nothing else that could be done for him by his oncologist. He has been here for 8 weeks. Yesterday, Dr. Munoz informed him that his tumors have shrunk by 30%-40% on the CT Scan and continue to show improvement. He will get to go home to continue treatment and come back in 2 months for a follow up. His main discomfort is the scar tissue that built up from his radiation treatments, which were ineffective. (Snide Comment #2)

Please understand, I do not disapprove of conventional treatment. Chemo, surgery, and radiation have its very important place in the treatment of cancer. I believe that these are radical treatments that must be exercised with the utmost care. Cancer is almost universally regarded as a breakdown of your immune system at some point in your life. It can be caused by many things, including genetics. The way to improve your odds and quality of life is to sustain your immune system and use these harsh treatments sparingly. Some well-meaning doctors follow the cookbook, and forget the simple fact that we can’t cure cancer, yet. But the human body, in optimal condition, defeats it every single day, in every human body. Enough ranting, sorry…

----Last thing. I want everyone that reads this blog to know that I appreciate your concern for me and my family. This experience has shown me what a blessing my life truly has been. Even some that I do not know as well have taken the time from their lives to make sure that everything that is needed has been taken care of. Friends that I had fallen out of touch with have reached out to me with the care and concern of close friends that I thought that I had lost. I have learned valuable lessons from this trial. Lessons that have forever changed my life and perspective. I only have you to thank for this. I hope you get the feelings of a good deed performed, because all of you have truly inspired and bolstered my family in a very difficult time.

My love for each and every one of you!
Brian.

Blood work on Friday

2010-02-21T20:05:00.000-06:00

I met with Dr. Munoz on Friday to review my blood work. PSA has dropped to 2.14 and my AlkPhos has dropped solidly into the normal range at 110. This is all very good news. He believes that I will only need to be treated at his clinic for 4 weeks and then he will send me home with treatments that I can administer myself. I will have to keep the IV Port in my chest for awhile, but I don't notice it that much anymore. All in all, good news. I went for a drive today and ended up in LA. Why does LA have traffic all the time? Don't these people ever go home?

All for now. Will post again soon!
B.

Treatment options

2010-02-17T18:45:00.000-06:00

I have been emailing a man with a similar diagnosis, Ivan, in Australia recently. Even though I am relatively new to this stuff, it has given me an opportunity to learn and share experiences that have proven to offer support to others. For that, I am profoundly grateful. It doesn't matter where you are in this process. The thoughts, emotions, and hope are of value to anyone who chooses to look at why we are similar, instead of why you are unique. The "Point of the Post" today comes from my conversation with Ivan. While I am doing conventional treatments, I have placed my hope in predominately alternative. Conversely, David Emerson (Big C Blog-See Links) is doing some alternative (nutrition, etc), but is predominately conventional. David is over 5 years from advanced prostate cancer diagnosis and is doing well. I have met many that took the alternative route and they are doing very well, also. That is why I believe that this is such an important, individual decision to take ownership of your treatment plan. Whether it is Cancer or any other ailment. Knowledge is Power. Research helps you to ask the tough questions. Talking to others that you find to have similar circumstances give you real world information and can help you determine your path with confidence. Sometimes the prognosis is a little disheartening, but even if they tell you that there is a 30% survival rate for 5 years with advanced prostate cancer, 30% is not just a number assigned at random. It represents people like us. People with lives and families. A .300 Batting Average could land you in the Hall of Fame! Look for the similarity, but don't be afraid to blaze your own trail if your heart guides you.
My best to all!
Brian.

Tuesday - Day 2

2010-02-16T16:43:00.000-06:00

A little more on the Hyperthermia Treatment-

The Hyperthermia treatment consists of a bed like a tanning bed, but instead of a lid that pulls down, it looks like a range hood over your stove. Reflective pads are velcro'd to the sides and the front down to the middle of your chest. So your upper chest and head are not in the "box". You only wear a hospital gown and they put 2 sheets over your whole body in the box so your don't actually start to cook. The temperature inside the box gets to about 110-112 degrees. Your body temperature at your core raises to about 103. You stay in for about an hour. It wasn't too bad, but you feel a little tired for a couple hours after. I kinda liked it. Sort of like a spa, only with cancer. :)

PS- Don't know if it is unbridled enthusiasm and optimism or the treatment, but I feel really good today. Lots of energy, kinda like myself again. WOOHOO!

1st Treatment - San Diego Clinic

2010-02-16T08:00:00.000-06:00

Worked out the internet problems this morning. I arrived in San Diego on Sunday afternoon and spent the rest of the day trying to arrange longer term accomodations. On Monday morning, I went in to the Clinic in Tijuana, Mexico for blood work, consultation with Dr. Munoz, and possibly to start treatment. I parked at a Day Lot on the US side of the border. It takes more paperwork and assistance to get into a movie than it takes to walk into Mexico. Getting out is a lot longer (1hr) in line, but still a pretty simple process. I got to the Clinic, filled out the paperwork and Dr. Munoz was able to see me right away. He said that there were only 2 types of Chemo that had shown any ability to do anything with Advanced Prostate Cancer and that he did not think it would be of help to me right now, so it would not be in my protocol, unless something changed. Good news on that. He said he would be using Dendritic Cell Therapy. This has shown great promise at Duke University and other research hospitals.

Whole body Hyperthermia –this treatment enhances the benefits of chemotherapy and has a synergistic effect (killing cancer cells). It also enhances the immune system and assists in detoxification of the body. This therapy is given on a daily basis for the first two weeks of therapy and then adjusted accordingly.

Then for the Cancer in my bones:

Osteo therapy:
- Micalcic (salmon calcitonin) is a synthetic polypeptide of 32 amino acids in the same linear sequence that is found in calcitonin of salmon origin. This therapy is utilized to strengthen bone and assist with metastatic bone cancer. Micalcic is administered by injection while in treatment with SDC. Depending upon the evolution of therapy – the use of this medication may be changed to a nasal spray application (for home therapy program.)

Pamidronate – this is an effective treatment for bone cancer. It assists the bone to recalcify and strengthen. Pamidronate particularly kills cancer cells and has an oncolytic effect.

For Immune Therapy:

Metabolic therapy:

- Selenium IV therapy – enhances lymphatic drainage and immune system function. It also has an anti-cancer effect & stops metastasis.

-Zinc IV therapy – The lack of zinc in our bodies has been implicated not only in the initiation of certain cancers, but also in the transition, progression, and metastasis of the disease. When zinc is deficient, cellular functioning is compromised. Zinc IV therapy is an essential treatment for mineral & immune system balance.

- Artesunate IV therapy - this is a synthetic product from the Artemesia herb. It is known for its anti-cancer activity (it is an anti-cancer antibiotic).

- Polypeptides IV therapy – this is an essential treatment to protect liver, spleen, kidneys and bone marrow from the side effects of cancer treatments.

- Alban solution IV therapy – anti-inflammatory treatment. Alban is a combination of H2O2 and DMSO.

- Glyoxal IV therapy – helps to restore the normal pathway of cancer cells. Re-differentiation therapy.

-Vitamin C & K IV therapy – (apoptosis / antioxidant) produces apoptosis and eliminates free radicals; free radicals produce pain and inflammation.

Immune therapy:

- Mycoplasma vaccine – Autogolous vaccine, eighty percent of cancer cells have been linked directly to mycoplasma. This vaccine eliminates micoplasma and indirectly destroys cancer cells.

Allergostop vaccine – This autogolous vaccine re-programs (modulates) the immune system.

- Neo Springer vaccine – This specific synthetic vaccine targets Sialic Acid which is produced by cancer cells (up to 95%).

- Supplement program – An oral supplemental program is specifically designed to your needs while in treatment at SDC.

-Dendritic cell vaccine - this autogolous vaccine (vaccine from patient’s own blood) isolates the dendritic cells which are then cultured in a lab and trained to identify cancer cells. This process stimulates the immune system and NK cells to destroy cancer cells.

-I will also be receiving GcMaf, a very promising immunology program developed by a Japanese Doctor. I have read about this, and the results are amazing. Dr. Munoz said the results are similar to chemo, last much longer, with no toxicity.

These therapies are from the protocol I discussed with the Dr. at the initial meeting. After he has the results from my labs on Wed or Thurs, he said he may adjust the protocol as needed.

The surgeon came in and installed a port in my chest just under my left collarbone. It is an IV tube that will stay in while I am here. Many cancer patients get them because of the high number if IV's that they get. It saves you from all the needle sticks in the arm. Didn't hurt too bad getting it, but it got a little sore last night. Much better today.

He said that with this system that he strongly believes that I will be in full remission when I leave the clinic. If I follow the regimen, nutrition, and excercise, I can stay in remission for many years. He has several over 10, 15, and even 20 years with similar advanced cancer.

He has had this success with many types of cancer and I met several of his success stories yesterday. Some still being treated, others in for follow up.

Everyone is different, so while I am not sure how the treatment will be received for me, I am optimistic. And I choose to have hope that I was guided to this clinic through your prayers and thoughts. I believe that through this treatment, every possible avenue will be pursued and every treatment investigated and tried. I know in my heart that the good people I have been fortunate enough to be surrounded by for my entire life will be sufficient to pull me through this. I thank all of you for your support and prayers and will keep you up to date on this remarkable treatment.

If any of you have any questions, or know some one that may be interested in this treatment for themselves or a loved one, please do not hesitate to contact me at:
brianpca4@gmail.com. I want to share what I have learned in the hopes that it circulates to all who need help.

All of my love,
B.

Little angry today.

2010-02-12T23:02:00.000-06:00

I kind of blew up today. Not in a classic Brian Melt Down kind of way. Those only happen every 4 or 5 years, but still enough to make a pro wrestler jealous. The ignition source was a decision on treatment that my wife and I made. It is to see a Doctor who specializes in Cancer Treatment in Tijuana, Mexico. After a whole lot of research, we feel that this is a move that is the right one. That doesn't mean we are right. In fact, we fully understand that we are looking at options that aren't supported by conventional medicine. The reason we chose this clinic, The San Diego Clinic, is because they are using methods that are basically conventional and have had clinical trials in the US, but have not been approved by the FDA, yet. They also integrate many methods used as conventional in Europe, such as Hyperthermia and Low Dose Chemo. The reason for the decision is that several doctors, at Huntsman Cancer, EuroMed in Phoenix, and a doctor in New York are fairly convinced that the cancer is still spreading aggressively in my bones and maybe soft tissue organs. We don't know this for sure yet, but the bone pain is not letting up much. In any case, even if it isn't, it is time to hit it while it is down. Time to go on the offensive. I wish I knew if this was the right decision, but I will have to settle for it being the best decision. As in, the best one I can make with the information that I have, at this point in time. Modern medicine does move quickly, but not quickly enough if you already have cancer. All of this brings me to my "Point of the Post". I might have to trademark that one. When you have cancer, it affects everyone around you. Friends, family, even casual acquaintances. I can't even begin to tell you the number of people who told me that after they found out that I had Prostate Cancer, they went to the doctor for a physical and told the doctor that they wanted their prostate checked. (Insert San Francisco joke here). I am very glad that it awakened men to make sure that they kept their health as a priority. It shows you the ripple effect that news like this brings. Imagine being a close friend or family member that has just received the phone call, " Mom, Dad, I have cancer." My family had never dealt with anything like this before and there is a learning curve for all of us. The worst kind of "On the Job Training". I don't consider myself a very self-centered person, but when I think about it, it happens. Some of it from necessity, some from tunnel vision while you try to analyze just what this means for you and your upcoming future. So while you try to accept all input from family and friends, it overwhelms you and causes temporary paralysis of the part of your brain that lets you make short and long term plans. You start to question every decision that you make for yourself and your family. You wonder if the plans and decisions are sound due to the mental stress that you are under and maybe even let others make decisions that you should make and you go along with it because you lack the confidence to make decisions on your own. These things happened to me to one degree or another. Not all the time, but some. Your family and friends only want the best for you so they want to help, but you are unable to tell them how. I love my family dearly and I have some of the best friends anyone is blessed enough to have. I think I have set expectations for some of these dear people that they could not have lived up to. They are trying to understand my decisions, but don't agree with some of them. I understand that. We are trying to look into a crystal ball that doesn't exist. I can't depend solely on what modern medicine has to offer, because for me, it isn't much. It damn sure isn't enough. What sounds simple has been a difficult concept for me, and I think some of my family, to grasp. What I, and maybe others in my postion need, is the love and support from those closest to us. During the deliberations, input is asked for and always considered. I don't know everything. I make bad decisions sometimes. But, when the polls close, and the votes are counted, and the decision is made, I need the love and unconditional support of my family and friends. I can't handle the real and imagined voices of "I think that was a bad decision" or "Why would he do that?" or "What are they thinking?". This isn't buying a car, this is life or death. My advice to those that are reading this and have cancer, please have this conversation with your family and close friends. They will understand and be happy that the path is clear for them. If you are family or friend to someone with cancer, please just ask to understand what they are considering, ask what you can do to help them gather information to make that decision, let them make their decision, and then love them and go to war for them to support their decision. This is the hardest thing I have ever had to make decisions on. Many bad decisions can be undone, or if not undone, repaired sufficiently. These types of situations are true crossroads in life. One that it is very difficult to turn back from, whether spiritually, emotionally, physically, or financially. These are decisions that need to be made when the situation forces it, not at the leisure of convenience. Sometimes, you have to make these choices in a matter of days with dire consequence. I have taken longer to pick out a shirt. When the decision is made, that is when the family and friends can answer the question, "How can I help you?" or "What do you need?". The answer is, anything you can do to let them know how much you love them, support their decision, and want to do what they need to bring this choice to fruition. Sounds simple, but in the heat of battle, when love combines with fear, the blinders go on and survival instinct kicks in. Sometimes, just a word of encouragement is all that is needed to turn confusion into confidence. I had this conversation with some that I love dearly and they understood it perfectly. I could not wish for better support from them. Their love for me strengthens me when I need it most. They inspire me to battle this crappy soul sucking disease. They give me hope that I can use their strength to win my battle. They would sacrifice all that they have and would ever have to see me well. I know this because I feel the same way about them. To think, all I needed to do was open my mouth and tell them... Don't wait to have these conversations with the ones you love, cancer isn't even required :) .

Treatment I have been trying...

2010-02-12T22:19:00.000-06:00

I have been using MMS, which combines with citric acid to create a dynamic that pulls electrons away from molecules in the cancer cells causing the bond holding them together to be broken. It has shown great success in malaria and other viruses. The possibility is being considered that cancer is caused, and may be, a type of virus. You can read about the science here http://www.jimhumble.biz/ . It is fairly inexpensive and is being tried for many ailments, including the common cold. I have had a couple doctors look at it and they say the science appears sound, but there is not enough data to be sure if it is effective. You can order it here http://www.projectgreenlife.com/cart/pc/home.asp?idaffiliate=5226 . As always, it has not been tested by the FDA and claims not to cure or treat a disease. But, unfortunately, sometimes we have to try things ahead of the curve. I will keep you posted of any results. All for now. Thanks for listening.
B.

2010-02-11T05:56:00.000-06:00

This was a mixed week for me. On Monday, I got some labs back that continue to look good. The PSA dropped to a 2.7 and the Alk Phos finally came back down from 242 to 140 (25-140 normal). So while it is still on the high end of normal, it is officially normal. I was very happy with this news until I found out the same day that a very good friend of our family, Kenny, passed away early Monday morning in Florida. My Dad and Kenny were best friends and he had been "family" since before I was born. Kenny was a good man with a great heart. He called me a few times during my treatment in Reno and after to check on me and let me know he was there for anything I needed. I was hoping to see him over the summer or next fall. He will be greatly missed and I hope wherever he is, they serve Imo's pizza and Steak -n-Shake. Love ya Kenny. I also found out that someone I used to work with is suffering from Cancer right now, too. I have spent most of the day worried about him, which takes me out of myself. It's funny how you get wrapped up in the semantics of your own decisions, but if you are able to help someone else by showing them options, it crystalizes your thinking about them and you. It caused some reflecton on my situation. Seems like I do a lot of that right now. I am in a good place with this lately, but it obviously monopolizes a lot of my active thought. As I thought about Kenny, I kept thinking about my own mortality. Not that I feel like I am dying, because I don't. That's the point I kept coming back to. I realized that I won't ever be dying. As long as you can breathe and your heart is beating, you are living, not dying. You still have experiences to relate, laughs to share, and as my friend Annette Koob says, show tunes to sing. I choose to look at life this way now. Each day is a blessing. I will die someday, but I will never be dying, only living. A note to friends and family, don't let me forget this when the chips seem down. I hope I don't need reminding.

Introducing ... David E.!

2010-02-02T22:40:00.001-06:00

I have been emailing David E back and forth for the last couple of days. His blog is "The Big C" and can be found under links on this page. He lives in Kansas City, but is originally from St. Louis. His story is very similar to mine, but started 5 years ago. In fact, he just celebrated his 5 year Blog-versary. Not a real word, but you get the point. He has a lot of great info on his site, as well as a link to a non-profit foundation that he started to raise money for Prostate Cancer Research. Definitely worth several looks.

Feeling pretty good today. Took the kids to see Alvin and the Chipmunks Squeaquel (sp?). It was better than I thought it would be, but mostly exactly what you thought it would be. My buddy Joe recommends "Avatar" on the big screen, but that one is not for the kiddies. Thanks to all of you and if I haven't said it enough, I am in the best of care. My wife is the very best in the world for me and keeps me focused on taking good care of myself. Tomorrow we start Tai Chi. Slow motion martial arts for the expected slow motion attack. "Hit me right here. Ouch. No, slower" :)

Blood Work is Back!

2010-01-28T17:33:00.000-06:00

If you can tell from the exclamation, the results are good! PSA is down to 3.7!!!, Alkaline Phosphatase is still high at 242, but only up from 240 over the last 3 weeks. AST and ALT (2 other Liver indicators) are still very safely in the average range. How I love to be average again!! Testosterone is at 12. Another great sign that Hormonal Therapy is working. Welcome to the Brian Roller Coaster. Labs look really good and we are thrilled with the results. Thank you for all your thoughts and prayers. They are working!!
B.

Better today

2010-01-28T10:28:00.000-06:00

Sometimes all of this gets a little overwhelming. I think that I have to maintain a grip all the time, but in reality, you have to break down a little to rebuild your focus and appreciatate the good things in your life. I have too many things to be grateful for to list and I have hope. I did have a step back yesterday and last night, but I feel more like myself today. The Lupron taking my testosterone to 27 (normal 250 to 400) is likely piling on some also. Life is a roller coaster right now and my emotions tend to be along for the ride. We are looking at many options right now and some of these need to be taken on a step by step basis. I had blood drawn for a PSA and Alkaline Phosphotase on Tuesday and hopefully will get results today. Then we start to decide if a bone scan or PET Scan is the wise way to go. I will talk to my doctor after I get the results. I know some of you reading might wonder why all the detail in these posts, but it really does help me think things through and I think I will do better if people know where I am truly at, instead of putting up some kind of disguise.
As always, thanks for reading.
Love ya!
B.

Sad tonight...

2010-01-27T23:11:00.000-06:00

I wasn't sure if I wanted to share all of the details of my life with cyberspace, but my whole purpose of this blog was to help others identify and relate with my situation so they know that they were not alone. By helping others, I am helped.
I am not sure what happened or how, but after a phone consultation with a doctor, my mood collapsed. I am not afraid of what might happen (right now), but I don't want to get worse and deteriorate in front of the people I love. I don't want to say goodbye to my kids and my wife. I don't want to look at my parents, brothers, and sister from a hospital bed. In short, I am scared. I'm not quite 40 and was not prepared to think about this or make preparations for these things. I have spent the last hour or two fighting tears, and mostly losing. My dear, sweet wife is here to support me and believe in me. I need her strength because sometimes, I don't have any. I am not feeling sorry for myself, just helpless. I want to do the things that will help, it's just not clear what all of those things are. I know my family loves me and I am blessed with many great friends. For all of these reasons, I will fight harder, learn more, and pray more sincerely. I am not alone...and never will be.

First Post and the Whole Story...

2010-01-27T15:20:00.000-06:00

My intention for starting this blog was to share my experience, and hopefully my strength and hope. I would like to share my story in the hopes that someone can relate to it and will help them to find proper treatment.

In early June 2009, I began a diet known as the HCG diet. This is a fad diet that requires daily injections of a synthetic hormone. Even though I did lose weight over the two weeks I took the injections, I felt uncomfortable with the idea of injecting synthetic hormones for the purpose of losing weight. After two weeks I stopped taking the injections. After about another week or two, I noticed a change in my urinary patterns. I had urinary frequency at night and a feeling of constriction and weak stream when I did need to urinate. I am not sure if the HCG was related or not. Since it had been about two years since my last physical, I made an appointment to see a general physician. My overall health checked out fine, including my prostate, but when my blood test results came back, my PSA was elevated to 30.5. A normal PSA is under 2.0 and many times, under 1.0. The doctor called me to retest my blood in case of lab error. I went in the next day and had my blood drawn again. This time my PSA came back a 31. I was immediately referred to an urologist.

The urologist checked my prostate again and it was determined that it was extremely tender and swollen, likely due to an infection. I was put on an antibiotic, Levaquin, for about six weeks. I went for follow up appointments during the course of this antibiotic, but it was still decided that this was likely prostatitis. My wife and I were worried that not enough was being done to rule out cancer, but that assumptions were being made that it was only infection. We decided, at this point, to see a naturopathic doctor who specialized in prostatitis.

We went to see the naturopathic doctor and he also determined that this was very likely prostatitis and cancer was a remote possibility, and likely not possible at all. He prescribed a tonic, supplements, and a testosterone boosting supplement, Orchic PMG. We asked several times if this testosterone booster was wise since we had not had a biopsy or determined that this was not cancer. He replied at my age, 39, and without family history that the likelihood of cancer was almost zero. We decided, since he was so insistent, that it would be safe to take Orchic PMG. After four or five weeks, the pain in my hip and lower back had become severe, my insomnia was intolerable, and my urinary symptoms had increased. I decided at that point to cease taking all supplements prescribed by the naturopathic doctor. My wife and I decided that we needed to get to a respected urologist to determine the best course of action, and to rule out cancer.

We were able to get an appointment with a new urologist based on the high PSA and the symptoms that I had. When we went to the urologist, he told us that he wanted to do a new PSA, check the prostate, and since the symptoms had been there so long, a biopsy. We asked my wife to leave the exam room and the doctor performed a digital rectal exam. He noticed very quickly that the prostate was extremely hard and nodular. It was at this point that he informed me that there was a very real possibility that this was cancer. He said, at this point, that there wasn't any sense in prescribing antibiotics again, but he wanted to draw blood immediately to check the PSA and schedule for a biopsy. I had the blood drawn before I left the office on November 12, 2009 and scheduled the biopsy for the following week. I called his office on November 17 to ask if the results of my blood test had been received. The nurse said that the blood test had come back and that my PSA and risen to 151.8. My wife and I discussed our options and decided that our best course of action was to get Huntsman Cancer Institute involved. We canceled the biopsy with the urologist and told him that we were following up, but felt it was in our best interest to get Huntsman to perform a biopsy and discuss treatment options from this point on. The urologist agreed and wished us good luck. We scheduled a CT scan for Friday, November 20. We received the results the same day. The prostate appeared abnormal with malignancy spreading into the rear wall of the bladder and substantial lymph node involvement in the abdomen.

The biopsy was scheduled for November 23, 2009. The physician assistant performed another digital rectal exam and agreed that the prostate was extremely hard and that there was a very real possibility of prostate cancer. I went in for the biopsy and received one shot of Lidocaine in each side of my prostate. They then harvested 13 cores from my prostate. The doctors were incredibly compassionate and sympathetic at Huntsman, but I wished that I had known then to ask for a twilight sedative before the procedure. While the biopsy was very necessary, it was extremely painful. I have heard other accounts that did not seem to be as painful, but instead just very uncomfortable. Mine took about 45 minutes and I would strongly recommend to others having this procedure that they do ask for some type of sedative before this type of biopsy. We were told that the results would not come back for several days up to possibly two weeks. With Thanksgiving in three days, it seemed that we would be closer to the two weeks before we get a result. We asked the doctors performing the biopsy and the physician assistants if they would do everything they could to get the results as quickly as possible so we could start to think about our options over the Thanksgiving holiday. They were very diligent and made several calls to the lab to get the results as quickly as possible. In fact, I received a call the very next day, on Tuesday, that the results were in. Cancer was noted in all 13 cores, with a Gleason score of 9. The Gleason scale ranges from 2 to 10 and is determined by the abnormality and likely aggressiveness of the cancer, 10 being the worst case. I was asked to come in the next day, on Wednesday, for a bone scan.

The bone scan took place on November 25 and we met with our oncologist at the end of that day. We were hopeful that the cancer had not yet spread into the bones, but unfortunately that was not the case. The bone scan showed tumors present in the hips, pelvis, spine, ribs, sternum, and shoulder blades. After consultation with my doctor, he informed us that since the cancer was so widespread, surgery and radiation were not an option. Instead at this point I was to receive Lupron, a hormone blocker that stops the production of testosterone in my body. The reason for this is that prostate cancer initially is mostly hormone dependent. Stopping the production of testosterone in my body would likely send the prostate cancer into a temporary remission. At some point in the future, and each person is different, the Lupron will no longer be effective. When that happens, chemotherapy is the likely option unless something new has been approved. He also told us that I need to receive monthly infusions of Zometa. This drug is used in cancer patients for symptoms similar to osteoporosis. It strengthens bone, promotes healing, and has shown in some trials to have anticancer effects. We asked, other than the quarterly injections of Lupron and the monthly infusions of Zometa, were any other treatments planned? The oncologist said that due to the advanced nature of the disease, hormone therapy was the protocol until it no longer worked. My wife and I decided that we would do this hormonal therapy, but we wanted to look into other alternative treatments that would complement conventional.

Our searches for other treatments lead us to the new Suzanne Somers book, Knockout, which was recommended by my mother-in-law. This book interviews several doctors who are combining conventional and alternative medicine to the treatment and lengthy remission of cancer. After researching many of the fine doctors in this book, we decided to place our trust in Dr. Forsythe and the Century Wellness Clinic in Reno, Nevada. We went for an initial consultation with Dr. Forsythe on November 30, 2009. His clinical trial for Stage IV prostate cancer was in progress for over four years and had a survival rate of 84%. This compared to the 20% to 30% five-year survival rate of conventional alone treatment. We were very impressed with the Century Wellness Clinic in the doctors that work there and decided to begin treatment immediately.

Before treatment began they drew blood. When my lab came back, my PSA had risen to 158. Over the next three weeks, I met with doctors nearly every day and received infusions of Salicinium, hydrogen peroxide, and vitamin C, in addition to conventional medicines, vitamins, and supplements. When my blood was drawn again near the of my three week program, my PSA had dropped to 131. I credit the fine doctors and this clinic with stopping and stabilizing my aggressive cancer. I also received my first injection of Lupron near the end of my visit in Reno, and on January 6, 2010, my PSA dropped to 19.5. I will continue my treatment in Reno for one more week in the middle of February. I will continue to update weekly or more if circumstances warrant through this blog.

If anyone has any questions or comments, or I can be of help or service to anyone, please contact me through this blog and I will be happy to assist in any way possible.

Thank you and God bless,
Brian.