Christmas Love

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!!!

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.

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.

B.

Where have I been?

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.

B.

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!

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

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...

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...

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

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

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

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 = : (

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!!

B.

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...

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

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

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.

B.

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!

B.

Doing Well

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.

B.

Anniversary

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...

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.

B.

More tests next week...

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

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

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!

B.

Fish 1 - Brian 0

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.

B.

Lost

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

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...

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

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...

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.

B.

Had Chemo IV today

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

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.

B.

CT Scan and Chemo III

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

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

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

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

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

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

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.

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.