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How we are doing - Jan 26, 2009

Posted Jan 26 2009 5:55pm
I am dedicating this post today to tell you how Brian is doing, how I am doing and how the boys are doing - emotionally and physically, since I think I have made it pretty clear that spiritually we are doing well.

Brian -
Brian has had a great last few days physically. He hasn't slept much during the day. Cognitively, he is very "with it" and is remembering a lot more than he was early last week. He still has some issues with suddenly thinking an event that happened many years ago was very recent, or not remembering something that just happened, but only once or twice in any given day. Physically, Friday and Saturday, he was great. He had energy and maneuvered the stairs with confidence. He has not fallen since I last wrote about it on Wednesday. However, on Sunday, he said he felt his right hand and arm starting to get weaker. Still, he managed to get up, shower, get dressed (with a little help), eat a small breakfast, go to church, and then GO OUT TO LUNCH with some of our friends. It was such a successful day. He took a nap yesterday afternoon, but honestly, that is to be expected. He has had several phone conversations with friends and family. His speech is faltering and struggling, but he is able to eek out a conversation.

He is eating very little. He says food doesn't taste the same. He does eat some, though. He has lost around 8 pounds in the last few weeks. But don't worry, I am making up for it. Wait, on second thought, worry about it.

Emotionally, Brian is coming along. Friday evening and Saturday, most of the day, he was pissed. He had pursed lips and just kind of bounced his leg most of the day. He says he feels strong enough to keep fighting. Why not just try chemo again to see if it holds things off for longer? If he felt terrible, he could easier accept and stop fighting. So, I have explained to him that from the time of the CT Scan to the MRI, in just two weeks, the cancer popped up everywhere. It is in the leptomeninges, cerebellum bilaterally (both sides), brainstem and visible spinal cord on the MRI of the head. In hind sight, the symptoms he was having in October with the ventricles filling up and not draining was probably the beginning of this progression. The symptoms he had in December with the sudden vomiting and balance were signs of the worsening of this condition. The most recent scan simply confirms it. I ask him, "Why would we take more medicine that makes you weak and tired if it isn't helping?"

This conversation kills me. I feel like I am telling Brian to give up, like I am crushing his spirit and optimism. This man who has so courageously battled and so optimistically confronted every obstacle in front of him is now being told by one who has stood by him through every single moment of it all in the last 11 years that it is time to be done. MEDICALLY. I told him if he wants to keep fighting, then we turn all that energy and attitude directly to his spiritual healing. We give it all to Jesus. He says that is a given. He always gives it to Jesus. He is having a hard time not doing anything else medically.

Over the last few days, he is coming to terms with it. He is less angry. He does not sulk or become withdrawn. He is the same Brian as always.

Gavin and Grant:
I think they are okay. I have explained that the doctors said they don't think Daddy is getting any better and there is no more medicine to help Daddy's cancer. They ask me if Daddy is going to die. I explain that yes, Daddy is probably going to die. Naturally, to a 5 and 7 year old, there is no concept of process. When they pick up a golf club, they think they are going to get a hole in one each time rather than understanding things are gradual. They then ask me if Daddy is dead in the other room. "Mom, check on Daddy. He might not be sleeping. Maybe he died." They have questions about what Daddy will look like when he is dead, " Will we see blood? Will we see his bones?" I explain that no, it will not be like Star Wars or Pirates. Daddy will become more sleepy and then he will get sicker until he stops breathing and then he will drift off to Jesus. There will be no blood or bones or oozing.

I spend a lot of time reassuring them and confirming their emotions. Whenever we talk or they have questions, I tell them it is okay to be sad or mad or scared. Mommy is a little of all those, too, but we will be okay. The most important things is that Daddy loves and trusts Jesus, so he will go to Heaven to be with Him. We will go there some day if we believe the same things, but we have to stay here on Earth until Jesus thinks it is time for us. We have to spend a lot of time with Daddy making sure he knows we love him and doing fun things with Daddy.

I have explained that we will have lots of help from their grandparents, friends, aunts, uncles, and cousins after Daddy dies and while he is sick. There will be lots of people calling and visiting because everyone wants to see Daddy. So many people know and love Daddy and want to spend time with him. They will see nurses coming in and out of the house and there may be more things daddy needs to help him move - like the wheelchair, a hospital bed, a stair lift, etc. If they ever need to talk about any of it, they can talk to me or Daddy or anyone they know and love. Or if they want to talk to someone else who can help them, I can find them someone.

Grant and Gavin sometimes tell their friends. I make sure I tell their friends' parents if they play with them on a regular basis. Their friends think it sounds kind of neat. They will say things like, "Then I will come down lots more and play with you so you won't be sad." At times like that, I am grateful that they cannot currently comprehend the magnitude of this loss in their lives.

Sometimes they cry. I have found Grant hiding under a blanket sobbing, but trying not to, that he doesn't want daddy to die. I just pick him up and hold him and cry with him telling him, I know. It is okay to be sad. It is okay to be mad. I have found Gavin in similar situations. I just put him on my lap, stroke his hair, and tell him, I know. It is okay to be sad. I am sad, too. So is Daddy. It isn't anyone's fault. Gavin said, "It's the stupid devil's." He knows he is allowed to say the word stupid in connection with the devil, so he will say it again and again. I feel like screaming a few 4- letter words here and there, so I figure he needs an outlet.

Grant is confused about illness in this house. When Daddy is sick, he gets lots of attention and the mood changes. The kids notice this, especially Grant, being home after his half day of school with Daddy and Mommy every afternoon. He will suddenly get headaches when Daddy isn't feeling well and need to be held or need to watch a movie. Sometimes he needs ice cream. Sometimes he gets those things, sometimes he doesn't. I know it is confusing for him. I tell him Daddy doesn't want to be sick. I sure don't want any of them sick. I would rather play a game with him if he feels good. Sometimes it works. Sometimes it doesn't.

Otherwise, they are going on pretty normally. They are playing with friends, watching TV, doing homework, eating, wrestling, whining, fighting, etc. I am just trying to help them stay and feel normal in any areas I can.

Honestly, I am doing well with a few exceptions. I don't really know how well I am sleeping. I feel pretty tired a lot of the day, so I think I am tossing and turning. Don't offer me aide on which sleep aid to take. I won't take it. They make me a walking zombie and I need to be able to take care of any issues that may arise in the course of a night. We have relatives coming into town this weekend, so I may take a sleep aid or just sleep in one day this weekend. My neck and my shoulders feel as though they are trying to hold up a 50 pound sack of flour or something. They hurt all the time. I had a massage on Friday, but it did little good to help ease the tension in my neck and shoulders. Any tips?

I have an unbelievable outpouring of support. Tomorrow, I plan on writing to tell any of you that are local or long-distance what we need, what you can do and what we don't need and what we would rather you NOT do. Not so sound ungrateful, but I know many want to help. There is only so much help one family can accept, though

I have contacted hospice. They admitted us this weekend which gives me much relief that if Brian were to take a sudden turn for the worse, I know who to call and what to do. The hospice contact was difficult for Brian. Since he feels good physically, he feels like people are giving up on him. I said, I have to have these resources here more as a "just in case." I didn't know what valuable resources hospice provides from a social aspect - counseling, advice, materials for the children. I am so glad I contacted them and can't wait to get more help with the children.

I am on a roller coaster. I don't think I am in denial. I am more in survival mode. One minute I am so grateful for the many blessings God has granted us with our lives and our children, and the next minute I break down and cry uncontrollably. One minute, Brian and I laugh and joke, the next minute I lay my head in his lap and sob about the unfairness. One minute I look at him and breathe in every square inch of Brian, the next minute I can't stop the tears from coming wondering when the last time he strokes me hair may be. I think these are normal when someone is dealing with a terminal loved one???

Neither Brian nor I are happy with how we are spending our time. I have been spending a lot of time on the computer reading emails and comments and writing blog posts. He has been watching a lot of TV and the boys are kind of just doing their thing. We want to do more together, to make these moments more impactful. We are going to do more to turn off the TV at night and play more board games and read more books together. We have to give the kids their normalcy, too, so it is a difficult things to balance. We don't want to shove memories down their throats. We want them to be memories that happen naturally. Yet, we know our time is likely limited so some things will be more forced.

That about sums it up. All in all, we are all gradually coming together. We are growing. We are grieving. We are accepting. We are praying. We are learning. We are bonding. We are loving. We are living.

Mostly though we....
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