There isn't much to report lately. My hemoglobin has been maintaining betweeen 9-10, which for most people would be low, but I seem to do okay with. I don't have a ton of energy, but enough to do the things that I need to. I still get tired in the evening and I need the extra sleep. But at least I am up when I want to and need to. The kidney seems to be operating fine. I will go back in to have the Nephrostomy tubes looked at in early Feb to see what the long term solution for drainage will be. The retaining of the fluid from extreme swelling of lymph nodes is what caused that part of the problem, so unless we know that the swelling has decreased drastically, which we don't right now, then we need a backup plan to make sure that I don't retain fluid and end up back in the hospital. Other than that, things are pretty quiet right now and I like it that way.
B.

I vant your blood!!!

This week all seemed to be going pretty well except for some strong fatigue on Monday and Tuesday. I was in anyway for blood work so they checked kidney function and hemoglobin to see if I was still anemic for some reason. The kidney function looked great. Better than it had since before the hospitilization before Christmas. The hemoglobin, however, for some unknown reason dropped to 7.1. I definitely noticed a drain in energy. They decided to give me 1 unit on Tuesday and one on Wednesday. I started to feel a little better after the first one, and a lot better after the second one. Hopefully, we can get my body to make the adequate number of red blood cells and get away from the transfusions, but at least I have a good option if I need it. It is a great reminder to me, even though I can't donate now, please help to keep these blood banks full. It is a great way to help your fellow man, even if you don't know who it might be. It is used for so many emergent and non-emergent situations, but it truly saves lives. If you see a blood drive, and it's been awhile, and you have a couple extra minutes, picture someone you know or love that might depend on this type of gift and give a little bit of yourself.
All my love and thanks!!
Brian.

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.