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.