Yesterday, we heard from the tumor board. The board is suspicious that the growth is more likely tumor and not radiation effect due to some characteristics and something about organization and a few other words that may as well have been, and probably were, in LATIN for all I know. What I do know, is that we were not surprised by this news. We have not seen this much growth in such a short time. The Petscan results are not in yet, but honestly, I would be surprised if they showed anything different. I think Brian would, too.
What DID surprise us was that one of the surgeons mentioned another surgery as a potential option. He said that he thought he could get in and debulk the mass without hampering the motor cortex and without causing Brian much problem. Our next step is to have a conversation with this surgeon. What he would want to do first is map the brain and ensure he was not going to touch or hurt any important areas causing Brian further detriment before he attempted to debulk.
There are a few issues with this. First of all, how likely would this surgery be to cause Brian harm? Because we are being faced with a decision – how much of one’s life is one willing to give up for the sake of living longer? Brian lost a lot of function after the last surgery. He doesn’t want to go through that again. And Brian knows that whatever he wants is okay with me. It truly is. Brian doesn’t want to be a burden. I have assured him that he is not a burden and even with further issues, he would not be a burden to me. I would take care of him if this is what he wants. He isn’t sure if this is what he wants because the second issue is that they are unsure how much long term benefit this will have for Brian. With a debulking of the tumor, the surgeon would be unable to get it all. They will never say they got all of a brain tumor due to its “fingers” unseen by even advanced medical equipment. And it appears the tumor is growing regardless. Would debulking provide much benefit and for how long? Is it worth the risk? There is simply no way of knowing if this would keep Brian here longer or how much longer. It is an agonizing decision. A decision for which I believe there is no “right” answer. Simply a personal choice. It is Brian’s choice. I support him no matter what he decides.
So, Brian and I have begun “the talks.” The talks where I assure him I am not afraid of living without him and he assures me he is not afraid of dying. And I really am not afraid of living without him. I am coming to terms with it slowly. I am angry and my faith is faltering and I am heart-broken, but I am not scared. While that could be the pharmaceuticals speaking on my behalf, I believe it is the peace of Jesus within me. And for Brian, he is at peace with dying. He is not happy with the potential timing and the impact it will have on his children, but the actual process of dying isn’t frightening him anymore. Honestly, the talks are liberating. To be able to openly discuss that which lays heavily on our hearts, but that which we feared would break the other person, without that fear is priceless.
His concerns with dying are the following: Most importantly, he says, he doesn’t want me to lose my faith and he knows that many days I am faltering lately. How tragic is it that the one who is facing his mortality every day is the one reassuring the surviving of the grace of God? He says it is very important to him that my faith stay strong so I can continue to pass that on to our boys because it will be easy for them to stray from faith, too. Secondly, the age of our boys. They are simply too young to have a heart to heart with about the things he wants them to get out of life - the things he would teach them throughout their years and in life lessons. He will most likely not be around to instill values and morals in their adolescent years. That is the one thought that brings him to tears. And I don’t know what to say to comfort him. The hard truth is the boys are very young. They will have little memory of these years, but I will try my damnedest to embed these years into their long term psyche. I know anyone that has been touched by Brian will help me do that. They couldn't help BUT do it.
So, don’t get me wrong, Brian is not giving up. He is going to stay the course with speaking with the surgeon first, weighing that option and then trying a new chemo regardless. We have some tough decisions ahead again. Brian wants to continue to live. It is just becoming more apparent that barring a miracle, which we both know could always happen, Brian’s cancer is growing and we have little remaining weapons. Prayer, which is our strongest weapon, will always remain in our arsenal.
KEEP BELIEVING
What DID surprise us was that one of the surgeons mentioned another surgery as a potential option. He said that he thought he could get in and debulk the mass without hampering the motor cortex and without causing Brian much problem. Our next step is to have a conversation with this surgeon. What he would want to do first is map the brain and ensure he was not going to touch or hurt any important areas causing Brian further detriment before he attempted to debulk.
There are a few issues with this. First of all, how likely would this surgery be to cause Brian harm? Because we are being faced with a decision – how much of one’s life is one willing to give up for the sake of living longer? Brian lost a lot of function after the last surgery. He doesn’t want to go through that again. And Brian knows that whatever he wants is okay with me. It truly is. Brian doesn’t want to be a burden. I have assured him that he is not a burden and even with further issues, he would not be a burden to me. I would take care of him if this is what he wants. He isn’t sure if this is what he wants because the second issue is that they are unsure how much long term benefit this will have for Brian. With a debulking of the tumor, the surgeon would be unable to get it all. They will never say they got all of a brain tumor due to its “fingers” unseen by even advanced medical equipment. And it appears the tumor is growing regardless. Would debulking provide much benefit and for how long? Is it worth the risk? There is simply no way of knowing if this would keep Brian here longer or how much longer. It is an agonizing decision. A decision for which I believe there is no “right” answer. Simply a personal choice. It is Brian’s choice. I support him no matter what he decides.
So, Brian and I have begun “the talks.” The talks where I assure him I am not afraid of living without him and he assures me he is not afraid of dying. And I really am not afraid of living without him. I am coming to terms with it slowly. I am angry and my faith is faltering and I am heart-broken, but I am not scared. While that could be the pharmaceuticals speaking on my behalf, I believe it is the peace of Jesus within me. And for Brian, he is at peace with dying. He is not happy with the potential timing and the impact it will have on his children, but the actual process of dying isn’t frightening him anymore. Honestly, the talks are liberating. To be able to openly discuss that which lays heavily on our hearts, but that which we feared would break the other person, without that fear is priceless.
His concerns with dying are the following: Most importantly, he says, he doesn’t want me to lose my faith and he knows that many days I am faltering lately. How tragic is it that the one who is facing his mortality every day is the one reassuring the surviving of the grace of God? He says it is very important to him that my faith stay strong so I can continue to pass that on to our boys because it will be easy for them to stray from faith, too. Secondly, the age of our boys. They are simply too young to have a heart to heart with about the things he wants them to get out of life - the things he would teach them throughout their years and in life lessons. He will most likely not be around to instill values and morals in their adolescent years. That is the one thought that brings him to tears. And I don’t know what to say to comfort him. The hard truth is the boys are very young. They will have little memory of these years, but I will try my damnedest to embed these years into their long term psyche. I know anyone that has been touched by Brian will help me do that. They couldn't help BUT do it.
So, don’t get me wrong, Brian is not giving up. He is going to stay the course with speaking with the surgeon first, weighing that option and then trying a new chemo regardless. We have some tough decisions ahead again. Brian wants to continue to live. It is just becoming more apparent that barring a miracle, which we both know could always happen, Brian’s cancer is growing and we have little remaining weapons. Prayer, which is our strongest weapon, will always remain in our arsenal.
KEEP BELIEVING