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

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.
Bria​n.

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-Jewi​sh 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-rootin​g 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 encompassin​g 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 uncomfortab​le 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 definitivel​y 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 change​r 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???

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.