Things are really starting to feel like they are getting back to normal. Dave's energy is getting better each day. He still needs to take a couple of good naps (or just some down time) every day, but overall he's staying up longer and his naps are getting shorter. He's been eating really well too. His portions are small (as they will always be due to the new architecture of his esophagus/stomach), but he's eating frequently and eating all the same stuff I eat. His weight has been stable since he's been home from the hospital (he's lost close to 40 pounds since his diagnosis in November), and now his challenge will be to start eating some of those 1,000 calories he's getting from the tube feeding each night so we can start to phase that out (probably over the next month or so).
Although he still looks very thin (his cheekbones have become quite prominent), he is starting to lose that certain look that is really hard for me to describe. It's almost like his face looked partially paralyzed and he was very robotic and just kind of odd looking when he first got home from the hospital. I'm glad his sense of humor has returned because he didn't even get offended when I'd sing "Domo Arigato Mr. Roboto". Yes, it's true, I have a juvenile sense of humor (that's why I get along so well with the 5 and 6 year old set).
Dave drove his car for the first time in a couple months. That felt like a milestone. He's been off the pain meds for quite a while now, so there was no medical reason he couldn't drive, but he felt like his reaction time was slow and his movements were stiff. This morning, however, he offered to drive Miles to school and I felt totally comfortable taking him up on it. I don't think he'll be taking any solo roadtrips in the near future, but it's nice to know he can do some driving if he wants/needs to.
Now that things are getting better, we have the dreaded appointment with the oncologist on Thursday. I have a feeling Dave will be starting chemo within the week. We're both hoping he can take the chemo orally or go in for infusions rather than have the 24/7 pump he had last time (it makes showering and just about everything else a pain in the butt), but we'll have to wait and see. Wish us luck.
Monday, April 9, 2007
Wednesday, April 4, 2007
A better day...
The last couple days have been, dare I said it, pretty good. Dave has been out of bed more and has gone for some good walks with me and the kids (the library, Ian's school, the grocery store). It has helped that the weather has been more cooperative. He had a CT scan yesterday to check the fluid in his abdomen and get a look at how his swallow function is working (yum, more barium to drink). The surgeon was very pleased with the results. There are no new pockets of fluid, his lungs look great, and he's swallowing perfectly provided he's sitting or standing and not hunched over too much. His list of meds is finally starting to diminish. He's completely off pain meds, the doctor just took him off the oral antibiotics, and he'll get his last dose of IV antibiotics tomorrow morning. There's still a small wad of pills he is taking, but I figure each time we can say goodbye to one more drug, it's a small step in the right direction.
I think it was good for us to talk with his surgeon yesterday because we both got a chance to ask for a bit of a reality check about whether my expectations are reasonable and just how much time he should be out of bed versus the time he spends in bed. I think the hardest thing for me is that right now to him bed seems like a big reward. Go for a walk, reward yourself with a nap. Fold some laundry, take a nap. (I guess I should also say I've never been a napper and I like to stay up late. I remember being about 10 years old and reading that Margaret Thatcher sleeps for only about 4 hours a night and thinking I wanted to be just like her. Unfortunately, I can now say that I've had lots of four-hour nights lately and I pretty much just feel like crap in the morning.) The doctor said if Dave is up and moving around (sitting on the couch doesn't count) at least four separate times for at least 20 minutes each day, I should let him nap as much as he wants the rest of the time. Ok, message received. However, the interesting thing is that I have completely quit giving him "the look" when he's in bed, but he now seems more motivated to get out of bed on his own. Go figure.
That's the end of the Dave update. The next paragraphs are kid bits I can't help but share, so if all you want is the update on Dave, stop reading...right...now.
Last night when I told Ian it was time for a bath, he told me he wanted to be a stroker. I must have given him a quizzical look because then he asked me what the word is for someone who takes their clothes off in front of people. Of course, by this time I'm wondering where he's been picking this stuff up, but I went along with it and offered up the word stripper. A bit more dialogue and I realized he actually meant streaker, not stroker (I could use my imagination to come up with a definition for that) and not stripper. He asked me if I'd ever seen a real streaker. I told him that I hadn't, but that Dave and his brother John were at the last game the Mariners played in the Kingdome before it was imploded and a streaker went running across the field. Dave pipes in with, "Yeah, but he had a sock tied onto his wiener" (yes, proper me, I cringe every time someone uses an incorrect word to describe one's anatomy). About five minutes later, after getting Dave set up in bed with his IV, I find both Ian and Miles naked in the kitchen trying to attach socks to their penises (peni?) with sandwich ties. Never a dull moment.
Molly got her cast off on Monday. Pure trauma. I think the trauma of the saw and the repeat x-ray was far worse than breaking the bone in the first place. And if I thought we might get a break after getting the cast off, I was sadly mistaken. Molly had a slight fever for a couple days and then got a rash that covered her cheeks, arms, and legs. Turns out she has Fifth Disease, which sounds really nasty, but is a very common childhood virus that is typically quite mild and not contagious as soon as the rash appears (really).
Ian barfed at school today and was sent home after lunch. Actually, the nurse drove him home because I was at work and Dave still isn't driving. He seems totally fine. Mainly, he just enjoyed an afternoon on the couch watching a movie and then was back out on the playground this evening.
This morning when I dropped the kids off at school, the power door on our van was getting hung up on something. Miles looked at me and totally seriously said, "Mom, I think this car is getting pretty cruddy. You should list it on Craig's List." Miles and I have been diligently checking Craig's List for the last week or so looking for a bike for him.
Very slowly, I think things are starting to return to something resembling normal. We see the oncologist on Thursday, so we should know then how soon Dave might be starting more chemo. Dave actually read the last couple blog entries (I think he was nudged that way by a friend) and all the recent posts. I'm hopeful he'll take a whack at the keyboard SOON!
I think it was good for us to talk with his surgeon yesterday because we both got a chance to ask for a bit of a reality check about whether my expectations are reasonable and just how much time he should be out of bed versus the time he spends in bed. I think the hardest thing for me is that right now to him bed seems like a big reward. Go for a walk, reward yourself with a nap. Fold some laundry, take a nap. (I guess I should also say I've never been a napper and I like to stay up late. I remember being about 10 years old and reading that Margaret Thatcher sleeps for only about 4 hours a night and thinking I wanted to be just like her. Unfortunately, I can now say that I've had lots of four-hour nights lately and I pretty much just feel like crap in the morning.) The doctor said if Dave is up and moving around (sitting on the couch doesn't count) at least four separate times for at least 20 minutes each day, I should let him nap as much as he wants the rest of the time. Ok, message received. However, the interesting thing is that I have completely quit giving him "the look" when he's in bed, but he now seems more motivated to get out of bed on his own. Go figure.
That's the end of the Dave update. The next paragraphs are kid bits I can't help but share, so if all you want is the update on Dave, stop reading...right...now.
Last night when I told Ian it was time for a bath, he told me he wanted to be a stroker. I must have given him a quizzical look because then he asked me what the word is for someone who takes their clothes off in front of people. Of course, by this time I'm wondering where he's been picking this stuff up, but I went along with it and offered up the word stripper. A bit more dialogue and I realized he actually meant streaker, not stroker (I could use my imagination to come up with a definition for that) and not stripper. He asked me if I'd ever seen a real streaker. I told him that I hadn't, but that Dave and his brother John were at the last game the Mariners played in the Kingdome before it was imploded and a streaker went running across the field. Dave pipes in with, "Yeah, but he had a sock tied onto his wiener" (yes, proper me, I cringe every time someone uses an incorrect word to describe one's anatomy). About five minutes later, after getting Dave set up in bed with his IV, I find both Ian and Miles naked in the kitchen trying to attach socks to their penises (peni?) with sandwich ties. Never a dull moment.
Molly got her cast off on Monday. Pure trauma. I think the trauma of the saw and the repeat x-ray was far worse than breaking the bone in the first place. And if I thought we might get a break after getting the cast off, I was sadly mistaken. Molly had a slight fever for a couple days and then got a rash that covered her cheeks, arms, and legs. Turns out she has Fifth Disease, which sounds really nasty, but is a very common childhood virus that is typically quite mild and not contagious as soon as the rash appears (really).
Ian barfed at school today and was sent home after lunch. Actually, the nurse drove him home because I was at work and Dave still isn't driving. He seems totally fine. Mainly, he just enjoyed an afternoon on the couch watching a movie and then was back out on the playground this evening.
This morning when I dropped the kids off at school, the power door on our van was getting hung up on something. Miles looked at me and totally seriously said, "Mom, I think this car is getting pretty cruddy. You should list it on Craig's List." Miles and I have been diligently checking Craig's List for the last week or so looking for a bike for him.
Very slowly, I think things are starting to return to something resembling normal. We see the oncologist on Thursday, so we should know then how soon Dave might be starting more chemo. Dave actually read the last couple blog entries (I think he was nudged that way by a friend) and all the recent posts. I'm hopeful he'll take a whack at the keyboard SOON!
Sunday, April 1, 2007
April 1
Wow, it's hard to believe it has been an entire week since I last posted an update. I've been kind of boycotting the blog (first unconsciously, then consciously) in hopes that Dave would sit down and type his own update. I keep casually mentioning it to him, pointing out that it's been several days since I've updated, but so far he hasn't shown a lot of interest. It's funny because he feels strongly about me posting regular updates on his blog, yet he hasn't been too keen on taking it over.
Dave's been home for 10 days now. Some days are pretty good and some days are hard. Our sister-in-law and niece were in town for the weekend, and it was really nice to have some help with the kids and with Dave (thanks again Lori and Erin). I think having people in our house encouraged him to stay out of bed more and to do a little more walking and engaging than he otherwise might have done.
Tonight, as I was flushing his IV and getting ready to start his antibiotics, he commented that I must be really lonely. I don't think I've cried for weeks, but I kind of lost it when he said that because, yes, I am lonely. I'm very lonely. But, unfortunately, it's not the kind of lonely that goes away by having a drink with a friend. I am lonely for Dave. I'm tired of sharing my bed, but feeling like I'm sleeping alone. I'm tired of feeling like a single parent when he's at home. I'm tired of putting on the brave face when it's not how I feel. I'm tired of updating his blog when he doesn't even care to read it. Most of all, I'm just tired.
Oh, here's my good news: After four weeks, Molly gets her sassy purple cast off tomorrow morning. Anytime someone asks her when she'll get it off she says, "Two weeks, cast off, two weeks." I think she'll be sorry to see it go. I sure won't. I still have a fat lip from getting backhanded by her last week. I can't even remember what I did that warranted the cast to the face, but I'm sure it was something really terrible like trying to change her diaper. Anyway, that's the fat left side of my lip; the fat right side of my lip is from her big head jumping right into my face. No need for collagen here...
Well, that's it. I'll keep working on Dave to get back on the computer one of these days.
Dave's been home for 10 days now. Some days are pretty good and some days are hard. Our sister-in-law and niece were in town for the weekend, and it was really nice to have some help with the kids and with Dave (thanks again Lori and Erin). I think having people in our house encouraged him to stay out of bed more and to do a little more walking and engaging than he otherwise might have done.
Tonight, as I was flushing his IV and getting ready to start his antibiotics, he commented that I must be really lonely. I don't think I've cried for weeks, but I kind of lost it when he said that because, yes, I am lonely. I'm very lonely. But, unfortunately, it's not the kind of lonely that goes away by having a drink with a friend. I am lonely for Dave. I'm tired of sharing my bed, but feeling like I'm sleeping alone. I'm tired of feeling like a single parent when he's at home. I'm tired of putting on the brave face when it's not how I feel. I'm tired of updating his blog when he doesn't even care to read it. Most of all, I'm just tired.
Oh, here's my good news: After four weeks, Molly gets her sassy purple cast off tomorrow morning. Anytime someone asks her when she'll get it off she says, "Two weeks, cast off, two weeks." I think she'll be sorry to see it go. I sure won't. I still have a fat lip from getting backhanded by her last week. I can't even remember what I did that warranted the cast to the face, but I'm sure it was something really terrible like trying to change her diaper. Anyway, that's the fat left side of my lip; the fat right side of my lip is from her big head jumping right into my face. No need for collagen here...
Well, that's it. I'll keep working on Dave to get back on the computer one of these days.
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