Jan 10, 2012 - 2:43 am
We are just plodding along here, taking it day by day, one day at a time. I think that David may have hit a plateau. He seems like he is holding his own now, not improving a whole bunch, but not going downhill either.
David went to a movie with a friend earlier this week...his old college roommate. I'm always so very, very happy when David gets out. He's feeling so fatigued that it seems like a supreme effort to get up, get dressed, head out and do stuff. He always comes home and naps. Anyway, he said he had an okay time. He thought the movie was dumb and they left in the middle of it. I wonder if it was dumb or if David just has a shorter attention span? I have to be careful that I don't create issues when there isn't any issue there.
David went to church with us on Sunday. Church is a big deal because it's pretty overwhelming. We have gone to the same church since before any of our kids were born--for over 30 years. The people there are family to us. So when David shows up after being so sick and having been gone for over a month, everyone is so glad to see him, and they tend to gather around him and ask questions. All because they care, and David appreciates it and he's glad that so many people care and are interested, but it's hard to keep answering the same questions...how are you feeling, etc. He was really wiped out by the time we got home. Then we had the family over for our regular Sunday dinner. David took a short nap, then he played Bananagrams with me and his two sisters and his brother. It was wonderful to have him play with us...but it was sad too, because he spelled some crazy words. He used to beat us all the time but now he spells a lot of things phonetically. It's sad, but in some ways, it's funny because he's pretty creative and he comes up with some pretty unique words! I figure that I have two choices....let myself be sad and depressed because he doesn't spell that great any more, or choose to be happy and grateful that he's sitting at the kitchen table with his family, playing a game. I chose to be happy and grateful.
We were driving to a medical lab to get his weekly blood tests done today, and David saw a girl walking down the street. She was walking pretty fast, and you could tell that she had a purpose. David watched her and said that when he sees someone walking like that, he thinks that he'll never do that. I asked him what he meant, and he said that he doesn't ever see himself being able to walk like that again, with so much energy and zip. It made me so sad. But I told him that he is still recovering from the chemo and that when he is all done with the chemo and he has a chance to recover, he will walk like that again. I reminded him that he walked the puppy all around the block the other day, and that he was walking over a mile two times a week before his last chemo, to get to the lab that was doing his bloodwork. He didn't say anything---I hope that it made him feel a little better.
David is much improved....way, way, WAY better than when we got home from the hospital, but he definitely has some issues that he didn't have before. For one, the spelling thing. And he moves really slowly now. His hands shake really bad. I think that might be from the keppra? Not sure...He also does some odd things...not a big deal, just different. For example, he had an open can of Coke, and instead of putting it in the cupholder, he set it down on the floor of the car. He never remembers to put his seatbelt on. He is white now....not pale, but totally white. He looks like a different person. His face is really puffy from the steroids and he is totally bald. He even lost most of his eyebrow hair and eyelashes. None of these changes are life threatening but they are still hard. This is the first period of time that we have really seen a visible indication of the changes that cancer has brought to David. I hate it--but it's the way it is.
David said to me today, "Thank you for taking such good care of me. Thank you for cooking for me and driving me everywhere, and for putting your life on hold for me." I told him that I'm only doing what I want to do. I wish I would have thought to have said that all I have really done is change my routine a little. He really is amazing....he doesn't complain or ever talk about being afraid or anything. He's really unselfish. I could take some lessons from him.....
Anyway, we are basically marking time until his next treatment on 1/24-1/27. I'm dreading the MRI and the results, dreading the stay in the hospital, dreading how it may affect David....but refusing to think about it until I absolutely have to. I called our NO with some questions on Thursday and they never got back to me. I hate that they don't return my calls. It's so disrespectful and callous. I'm not calling about a hangnail or a runny nose....I am calling because my son had BRAIN CANCER. I will have to start calling and being nasty, and I hate doing that. But I need some answers....
Love and blessings,