Sunday, August 28, 2011

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.

Tuesday, August 23, 2011

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.

Saturday, August 13, 2011

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.