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.