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.