Maybe good news???

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

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?

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...

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

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

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 administeri​ng 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

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.