I am so scared I am going to forget him eventually. I'm going to forget how he smells. What he sounds like. How it feels to have him be a live next to me. I just want to make sure to get the best out of him that I can while he is here.
I can't seem to stop crying. I cried in front of him for the first time since the diagnosis. He said that now is the time to cry. I don't even know what to do with myself. Can't seem to be more than five feet away from him. He's sleeping in the bed behind me and I just want to be awake and soak in all of him. I am running out of time and I don't know what to do with myself. I just know the end is coming and that scares the hell out of me.
Sunday, March 30, 2008
Hospice care and the attached emotions
Dad is really bad off today. I am sitting in the room with him as he sleeps because I can't be too far away from him. It's as if I can feel the end coming. He is in so much pain. He is back to the pain being so bad he is crying. My heart hurts so uch for him. Hospice is starting this week. I'm sure of it. Dad keeps asking for it and I'm sure that is the next step.
Last week we had our appt with the oncologist. He pretty much said the cancer is moving too rapidly for anything else to be done. Said chemo will only hurt him and he would end up dying of an infection or virus because his white count would be so bad. Radiation offered only a touch of help so no more of that. And the clinical trial is a no-go. There was he possiblility of a different type of pill for him, Something to arrest the development of the cancer so it stops spreading and then we could go in for chemo. But I don't think he is going to get there.
Tomorrow we are going in for a blood transfusion. He is severely anemic and the doctor wants him to get some new blood. I hope that a rush of new red cells will mean that he has a few more good days. I'm a little scared of what a transfusion is and what it will do to him. But I am keeping good thoughts and a bucketful of hope.
I can't stop thinking about everything we have shared. Everything we have done together. All I want is a little more time with him. I suddenly want longer conversations and an extra five minutes every time I saw him. I want back the nights of debates and the big bear hugs. I don't want him to die. I'm not ready. I know that is a selfish thing to think. And I know that his passing is going to leave him in comfort and ease his pain. But I want to have him here. I know that when he's gone, he's gone. Forever. And that is something I am not willing to wrap my head around quite yet.
Last week we had our appt with the oncologist. He pretty much said the cancer is moving too rapidly for anything else to be done. Said chemo will only hurt him and he would end up dying of an infection or virus because his white count would be so bad. Radiation offered only a touch of help so no more of that. And the clinical trial is a no-go. There was he possiblility of a different type of pill for him, Something to arrest the development of the cancer so it stops spreading and then we could go in for chemo. But I don't think he is going to get there.
Tomorrow we are going in for a blood transfusion. He is severely anemic and the doctor wants him to get some new blood. I hope that a rush of new red cells will mean that he has a few more good days. I'm a little scared of what a transfusion is and what it will do to him. But I am keeping good thoughts and a bucketful of hope.
I can't stop thinking about everything we have shared. Everything we have done together. All I want is a little more time with him. I suddenly want longer conversations and an extra five minutes every time I saw him. I want back the nights of debates and the big bear hugs. I don't want him to die. I'm not ready. I know that is a selfish thing to think. And I know that his passing is going to leave him in comfort and ease his pain. But I want to have him here. I know that when he's gone, he's gone. Forever. And that is something I am not willing to wrap my head around quite yet.
Friday, March 21, 2008
Overwhelming
That is the only word I can think of right now. Overwhelming. Overwhelming sadness. Overwhelming pride. Overwhelming happiness. Overwhelming love. Overwhelming devotion. Dad is sleeping right now and Cristin just left. She and Daniel came over for a little while. I could tell how bothered she is.
Crap. There is so much to talk about and yet all I want to do it fix it. I'm sitting here in tears because I don't know what else to do. I don't know what is going on with him. I know more than anyone in his life what he is doing and what meds he's on and how he sleeps. But I don't know the pain. I don't know what he's thinking. I don't know what he's fighting. I don't know what to do with the signs I see all the time, things that could be making him worse. Are they just side effects? Are they signs that he is getting worse? Are they just the dowfall until he starts to get better?
What if he doesn't get any better? What then? When do the treatments stop? When does he go into hospice? I see the man that is my dad and I see the mental strength. I see the fight in him and I know it is frustrating the hell out of him to not be able to fight this. I know he doesn't want to give up. I know he wants to fight this. I know he's scared of the chemo and the MRIs and the scans and everything he has to do.
What I don't know is how long. What I don't know is what I am doing. I just want someone to come over, look at him and say "yeah, he'll be fine. This is just a setback." And that isn't going to happen.
Crap. There is so much to talk about and yet all I want to do it fix it. I'm sitting here in tears because I don't know what else to do. I don't know what is going on with him. I know more than anyone in his life what he is doing and what meds he's on and how he sleeps. But I don't know the pain. I don't know what he's thinking. I don't know what he's fighting. I don't know what to do with the signs I see all the time, things that could be making him worse. Are they just side effects? Are they signs that he is getting worse? Are they just the dowfall until he starts to get better?
What if he doesn't get any better? What then? When do the treatments stop? When does he go into hospice? I see the man that is my dad and I see the mental strength. I see the fight in him and I know it is frustrating the hell out of him to not be able to fight this. I know he doesn't want to give up. I know he wants to fight this. I know he's scared of the chemo and the MRIs and the scans and everything he has to do.
What I don't know is how long. What I don't know is what I am doing. I just want someone to come over, look at him and say "yeah, he'll be fine. This is just a setback." And that isn't going to happen.
Wednesday, March 12, 2008
As He Sleeps
Dad is sleeping right now. And I'm trying to wrap my head around the idea that it is Wednesday already. Yet at the same time I can't believe it's only Wednesday. With the time change there are a few clocks here at the house that have not been turned. Every time I go into the office, which I am using as a clothes room, the clock says it is an hour earlier than it really easy. I have to do the math for the actual time then I have the thoughts, "I wish it was still 6:00- I wish I had that hour with him still."
We are in the middle of the radiation treatments. Talk about not fun. Every weekday for ten days so we are in this until next Wednesday. They are short appts but they take a LOT of energy from dad. It really knocks him out. Dad is in good spirits and keeps talking about how we are kicking cancers ass. Says he is in so much pain because the tumor is pissed we brought such a big stick to fight with. He still makes jokes and has a sharp mind. I truly just enjoy spending time with him. It is hard to watch, but there is nowhere else I would rather me.
Days and nights are hard. He only sleeps about an hour at a time. I try to crash when he does and get some rest. I find that the only time I am able to completely focus on me is when I go for my daily run. I try to hit the gym once a day for an hour when his girlfriend comes home from work. It is an interesting time battle.
I feel so helpless. I can do nothing but be here and force him to eat. And love him. Every day I find that I love him more and couold not have asked for a better father. He is supportive and kind and smart and funny. He never questioned what I wanted to do and is always there to bounce off ideas for different ways to do things. He is such a great guy and I just hate to see him in so much pain. That is the hardest part of all.
We are in the middle of the radiation treatments. Talk about not fun. Every weekday for ten days so we are in this until next Wednesday. They are short appts but they take a LOT of energy from dad. It really knocks him out. Dad is in good spirits and keeps talking about how we are kicking cancers ass. Says he is in so much pain because the tumor is pissed we brought such a big stick to fight with. He still makes jokes and has a sharp mind. I truly just enjoy spending time with him. It is hard to watch, but there is nowhere else I would rather me.
Days and nights are hard. He only sleeps about an hour at a time. I try to crash when he does and get some rest. I find that the only time I am able to completely focus on me is when I go for my daily run. I try to hit the gym once a day for an hour when his girlfriend comes home from work. It is an interesting time battle.
I feel so helpless. I can do nothing but be here and force him to eat. And love him. Every day I find that I love him more and couold not have asked for a better father. He is supportive and kind and smart and funny. He never questioned what I wanted to do and is always there to bounce off ideas for different ways to do things. He is such a great guy and I just hate to see him in so much pain. That is the hardest part of all.
Monday, March 3, 2008
Stage 4
The worst has been confirmed. And I think I am still in shock from it. A life I saw with my father in every minute has been reduced dramatically. I am still trying to not think of it as a death sentence.
The Kindness of Strangers
I don’t know how people in the “olden days” did it. How did they lead such a solitary life? How did they not interact all the time with everyone and talk about everything? I think it is one of the great blessings of our generation to be able to be contacted at any moment and be available when we want to be available. I love my blackberry. I love getting my email when it arrives. I love that my friends can reach me. I love being able to answer questions right when they arrive, not waiting until I log on to a computer or can reach a phone. I love texting. Last month I sent and received 1800 texts. That is a LOT of texting. But I was involved with everyone and people know they could find me.
I have a friend who is fighting in Iraq right now. She sent me a great letter and one thing she said is that God will send me angels to help with this time. She is very correct. The internet is another way to stay involved with everyone. I have found a new side of it with my family’s new challenge. Suddenly the world has opened up and I am meeting people every day who are going through what I am, who are going through what my dad is, who have already gone through it and are available to tell their tales. I signed up for a forum on a site that I love, lungevity.org. It is awesome and the forums are really open and abundant. I posted an “I’m New Here” post on Friday. By Monday I had already received 5 responses to my post. Three of them were people who were in the same boat and were there to talk about it. I felt a rush of compassion for these strangers. People who soon will not be strangers at all.
I love that my father can get a hold of me at any time. I love that my sister can text me from work and vent without having to interrupt anything. I love that my friends can email me requests and I can answer them immediately. I love that I can do work from the road and I love that I am always available.
So say what you want about being too available and our lives not being our own. There is nothing more important to me than my family and the fact that they can get a hold of me any time they want, well, I would trade that for….well almost anything.
I have a friend who is fighting in Iraq right now. She sent me a great letter and one thing she said is that God will send me angels to help with this time. She is very correct. The internet is another way to stay involved with everyone. I have found a new side of it with my family’s new challenge. Suddenly the world has opened up and I am meeting people every day who are going through what I am, who are going through what my dad is, who have already gone through it and are available to tell their tales. I signed up for a forum on a site that I love, lungevity.org. It is awesome and the forums are really open and abundant. I posted an “I’m New Here” post on Friday. By Monday I had already received 5 responses to my post. Three of them were people who were in the same boat and were there to talk about it. I felt a rush of compassion for these strangers. People who soon will not be strangers at all.
I love that my father can get a hold of me at any time. I love that my sister can text me from work and vent without having to interrupt anything. I love that my friends can email me requests and I can answer them immediately. I love that I can do work from the road and I love that I am always available.
So say what you want about being too available and our lives not being our own. There is nothing more important to me than my family and the fact that they can get a hold of me any time they want, well, I would trade that for….well almost anything.
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