things seem to be staying the same for the most part....

Hello, everyone.

I haven't been responding to posts like I meant to and now I can't find most of the posts that I wanted to comment on. I am going to go through the different discussions and try to respond but I know that I will miss some. Please forgive me if I miss an important post and I seem callous for not responding. I seem to be scattered in my thinking and my memory is pathetic. Sometimes I think of what I am going to write to someone, and even though I never wrote it, I've thought about it so much that I get mixed up and think that I actually did write...>sigh<

We seem to be on a plateau right now. I am just living one day at a time. David has recovered really well from that abscess/infection etc. thing that we went through in Jan. and Feb. We have an MRI and an oncology appt this Thursday.....I don't have to tell you guys how that makes us feel. Dreading it.....I am expecting one of two things...one: they will say that there's some progression but they are going to do another disruption treatment ASAP. Or two: there's too much progression and the mass effect is too great for David to withstand another disruption, and they will just do intra-arterial chemo. I don't think IA chemo will help very much. It didn't do that much the first (and only) time that David had it. But it's better than nothing.

Of course, there's a third possibility...there could be so much tumor growth that they will say no treatment. But I don't think that's going to be the case. I don't know why I feel that way....I just don't think so.

David is still staving off seizures about 2 or 3 times a week by taking Lorazepam. He starts to feel one coming on, usually in the middle of the night, and he takes a Lorazepam and then he's okay. But he will sleep all of the next day.....til the evening, like 6 or 7 pm. The Lorazepam is one mg but on top of everything else (Keppra and Gabapentin, morphine, etc.) it just totally wipes him out.

So I am noticing some things being off with David. But why? It could be from a bunch of things, or a combination of things. It could be from the seizures, the medicines, the tumor, being so tired....who knows? The drs don't know. I sure don't know. But he's doing okay.

Some of the more recent posts on this site motivated me to make sure that David started getting more exercise. I know that exercise is super-important for his physical and mental health. So we decided to take a walk. Before I had a chance to say anything, David had his little doggie on a long leash, the kind that retract when you push a button. I didn't want to take any dogs but David really wanted Jackson to come with us. So off we went. We'd gone about 3 blocks and that dumb dog ran around David's legs and tripped him. David had his hands in his pockets and barely got one hand out to break his fall. He broke his fall with just one hand, and he really banged it up good. He fell down hard. His hand swelled up like a balloon and turned black, the palm and the back of his hand too. I gave it a day to see if it would get better but it looked worse so we ended up in ER and had to get X-rays. Just badly bruised. It looks bad because he's on enoxaparin---the blood thinner shots.

Speaking of enoxaparin....our insurance company from HELL is giving us trouble about getting those shots. They don't want to pay. They are $3,000 a month. I think our dr worked it out for us but I won't be able to relax until the syringes are in my hand. I am supposed to get them from the pharmacy on Thursday. They had to special order them. It's a good thing that I started working on a refill about 5 days ago or we would have run out and been in big trouble, going through all of these hassles with insurance.

David spends a lot of time in bed, resting, sleeping, and watching TV. I hope you guys don't think this is weird, but I've been sleeping with David. I just put on my sweats, wrap myself in my horse fleece blanket, and curl up on the king bed with him. Originally I started sleeping with him when he was having all of those seizures in the middle of the night. We were both scared. Now it's just a nice habit. We watch TV together....I'd never watched "The Office" before and we have xfinity so we are watching that show together and doing a lot of laughing. We have little tug of wars over the remote and we eat popcorn and snacks together....and I have to tell you guys.....I wouldn't trade these times for all the money in the world. Sometimes we just lay there and talk about stuff....things we did as a family when all the kids were little and still in school, the vacations we took, the funny things that have happened....what the future may hold....sometimes my heart is broken, and sometimes I cry because I am so glad for the times we have together. It's a painful, sweet, special time of my life. I think I will cherish these memories for the rest of my life, and I'm glad that I am spending this time with David. My husband works graveyards, and he understands. We both think that David is lonely at night. I am so glad that David is living with us and we can be there for him.

David has gone out for dinner with his friends, and he even played 18 holes of miniature golf. He went to a birthday party on Friday night, and then out to a sports bar afterwards. He was pretty wiped out the next couple of days...he has no stamina or strength. He is still really, really weak. He totters sometimes when he walks. I think it's from all the medication. But it was good for him to get out. I asked his close friend if he noticed a change in David, expecting him to say that David seems weaker or more forgetful, and instead he said that he could tell that David seemed more upbeat and positive. What a lovely surprise! Not at all the answer that I was expecting.

Like I said, there's definitely some things that are different with David, but we don't know why. Like he had trouble doing a kid's puzzle. But in other ways, he seems to have total clarity. When I heard that he was going to that sports bar, I texted him to be sure to take some Lorazepam with him, and to be sure not to drink anything. He wrote back, "Don't worry, Mom, I'm totally down with not drinking. I don't want to steal the show by having a seizure right in the middle of the party." Made me laugh!

So...Christy and I were shopping and Larry called me and said that David went to that party with two different shoes on his feet. David was wearing one of Larry's Adidas and one of his own Nikes. I was so sad and upset....David has always been so particular and picky about his dress and appearance, and it's so upsetting to see him slipping like that. Christy and I were talking about it while we were shopping and I said that I could handle David not being as sharp but it scared me because I wondered if he was on a downhill road. We got home from shopping---Christy and her husband Tommy and their two kids live right next door---and Christy dropped me off and then came over. She had an Adidas shoe in her hand and she said, "Mom. David didn't go out with two different shoes. Dad came over and took his shoes off, and when he left, he put on one of Tommy's Nike shoes and one of his own Adidas shoes and went home." I thought a minute.....and I said, "No, that was me! I just slipped Dad's shoes on for a minute to come to your house earlier today to get some ice, and I must have put one of Tommy's shoes back on by accident when I went home." We had a good laugh over that one! My point in telling you this story and what a moron I am is that.....I can get so worked up by a total misperception. I spent most of my shopping trip mourning some perceived problem with David that didn't even exist...and on top of it, I was the one who had the problem, and I'm not all worried and freaked out because I'm doing weird stuff. So what other perceived problems do I see in David that might not even really be a problem? I don't know.....

I'm enjoying the good in each and every day, and fighting not to let the bad things overwhelm me. I'll post our MRI and oncology appt results on Thursday. Later tonight I'm going to try to go thru all the threads and discussions and try to respond. I've especially been thinking and praying a lot for connsteele and David, and Raani and Jacob, and Edna and Sarah. So many of you are in my thoughts and prayers all the time.

Love and blessings,
Cindy
in Salem, OR