I'm so scared I'll forget so many of the wonderful things about Steve. I see dragonflies almost every day now, almost always at times I'm missing him. At Cindy's on the 4th of july with all the family around I could see one off flying around the neighbors tree. And today I saw several at the Japanese garden which I took my dad to and remembered when steve and I went there together on our scooters. We got crinkle cookies that Steve and I didn't have a chance to get before he died. I just can't believe he's gone. He was so young and we had so little time together. He was so fun. I miss the times before he got sick when he'd carry me around piggyback and I didn't feel fat. I can't stand to think that I'd have to sell his scooters that he would not even consider selling and couldn't narrow down to just one.
He always wanted to share everything with me. Every cool think he did on his website. Every neat thing he saw or read about. The games he played. It hurts to think of times I didn't listen or didn't make time for him. It's sad I wanted to go home after his platelet transfusion instead of driving to west seattle- but we would have gone if it was just the 2 of us. We didn't get enough couple time together. There were so many demands on our time. I just realized a lot of our lost bond of closeness was just having his parents and other people around all the time- and we had to have people around to keep from getting depressed.
I know these things of Steve's are not him.
This is the hottest, driest, most sunny summer we've had here in years. I thought it was weird how sunny it was in may- that steve got a nice month of weather for his last month. So strange to think the beginning of may he was on the road to a cure and the end was the full year of closure. I'd like to think he had a mission on another planet since he did so well here. I remember how he walked through the halls of the hospital on halloween with the plastic michette that nic gave him making a slow moan and trying to look scary. And dinging his bike-bell while walking laps. I remember that he played ball in the halls with me (for me more than him) to have fun.
Sunday, July 5, 2009
Tuesday, June 30, 2009
slim chances
I recently was fishing around on the LLS website looking at survival facts for AML. I wonder if something changed since we first looked at it, but the survival rate for AML is 23% or something like that. Maybe we were looking at MDS stats before.
I am still sad that I didn't spend more time cuddling Steve and talking more with him about all of this those last two weeks.
I miss him so much. I think he must be looking down on me and watching me cry and he would be crying too or trying to find a way to distract us.
Tonight I rode his scooter. I wanted to make sure to keep it running smoothly. It needed air in the tires and the gas light was on. I can't think of a time Steve would let the gas light go on. That was weird. I suppose if there is anything he could be doing, or he'd want to be doing, it's riding his scooter all day long- exploring some undiscovered area. His scooter does turn really well. It's very responsive and solid feeling. It is a bit hard for me to put on the stand, since it weighs about 50lbs more than mine.
I feel a bit like I'm going to be swallowed up by all the stuff at home. There is stuff I need to do everywhere, and it felt like a major feat to put the insurance cards in the scooters. That counts for my chore for today.
I have the cold that won't quit, and my throat is so sore. Sad AND sick!
I am still sad that I didn't spend more time cuddling Steve and talking more with him about all of this those last two weeks.
I miss him so much. I think he must be looking down on me and watching me cry and he would be crying too or trying to find a way to distract us.
Tonight I rode his scooter. I wanted to make sure to keep it running smoothly. It needed air in the tires and the gas light was on. I can't think of a time Steve would let the gas light go on. That was weird. I suppose if there is anything he could be doing, or he'd want to be doing, it's riding his scooter all day long- exploring some undiscovered area. His scooter does turn really well. It's very responsive and solid feeling. It is a bit hard for me to put on the stand, since it weighs about 50lbs more than mine.
I feel a bit like I'm going to be swallowed up by all the stuff at home. There is stuff I need to do everywhere, and it felt like a major feat to put the insurance cards in the scooters. That counts for my chore for today.
I have the cold that won't quit, and my throat is so sore. Sad AND sick!
Wednesday, June 24, 2009
guilt of the day
today the guilty feeling I had was not being the kind of wife to tell stever "you'll live forever baby- you'll make it through this". I was the wife saying- "can we just concentrate on the next few years instead of worrying about retirement?"
Isn't that rotten?
what else.
I did a couple chores today. I went to the gas station and I dropped off and picked up my drycleaning. And I didn't cry during any of my chores. I cried at the social security office but that seems appropriate. The woman there said there were a surprising number of young people losing their spouses. I think I'm young- or at least in that context.
I went to work today.
I like thinking of things I should be proud of. I had to think of Steve not to rush straight to work after my appt to do those chores. Steve never rushed through things- he appreciated the moment and did what he felt like doing. There was always time to get to work. though that wouldn't really fly at my company.
Isn't that rotten?
what else.
I did a couple chores today. I went to the gas station and I dropped off and picked up my drycleaning. And I didn't cry during any of my chores. I cried at the social security office but that seems appropriate. The woman there said there were a surprising number of young people losing their spouses. I think I'm young- or at least in that context.
I went to work today.
I like thinking of things I should be proud of. I had to think of Steve not to rush straight to work after my appt to do those chores. Steve never rushed through things- he appreciated the moment and did what he felt like doing. There was always time to get to work. though that wouldn't really fly at my company.
Monday, June 22, 2009
the day steve died
I think about this day all the time.
Steve took me to work in the morning for an 8am meeting. He had a blood draw not long after that but went home for breakfast after dropping me off. We were going to go to the blood draw together but I felt I couldn't get away from work right then.
After his blood draw he waited for me at Moka's, right up the street from my office. We loved to go there. He waited for me outside and sat in the sun with his hat and sunglasses on. I walked up and chatted for a second and then went inside to get some coffee and something to eat. When I came out he had a sad look on his face. I couldn't see his eyes behind his sunglasses. I asked what was wrong- he said he was feeling sick. I felt his forehead and thought he felt warm and asked him if he wanted to go to the doctors right then and he said no- he wanted to go home and see if he had a temperature. When we got home he took his temp and it was low, near normal. I thought we had narrowly escaped illness again, and I proceeded to clean our bedroom, bleach counters and talk of how we would stay home where it was safe.
I worked outside for a while and steve layed on the couch. He moved upstairs to lay on the bed and when I went up to see him he said he had a terrible pain in his rib area. I thought it was a side affect of his growth factor shots and gave him some morophine. I put a cold washcloth on his head. I rubbed his chest and back to relax him- in case the pain was anxiety.
After a while I pursuaded him to lay downstairs with me and I put in a movie "the sweet lands". We watched the whole movie on the couch and his parents stopped by at some point.
After the movie I went outside and cried because I was so scared that today felt different and how sad Steve looked. I thought I talked to someone on the phone but I can't remember for sure.
It was just after 5pm when he got a fever. It was 101.8 when I called Dr G. It went up to 102.8 in the half hour we waited at home to hear what room he would be checked into at Swedish. Steve said he thought he'd need a wheel chair when we got there. I was like WHAT? I asked if he could walk to the car. I asked if we should leave for the emergency room instead of waiting any longer. I packed steve's backs for the hospital as always- made sure to get his computer and slippers. When we heard from Dr G Steve walked to the car and we started driving. I told Steve his parents were meeting us there, and he said "at the condo?". I told him he had to fight- he had to take care of me.
I feel so selfish for worrying about myself. We never talked about how he could die since he was first diagnosed. I was so upset after the appointment where we learned his graft had failed- but still we never talked more about it. Instead we planned each day, talked about what a second transplant would be like. He was a ticking timebomb.
---saved the rest of this in a file so no one else would have to read it.
Steve took me to work in the morning for an 8am meeting. He had a blood draw not long after that but went home for breakfast after dropping me off. We were going to go to the blood draw together but I felt I couldn't get away from work right then.
After his blood draw he waited for me at Moka's, right up the street from my office. We loved to go there. He waited for me outside and sat in the sun with his hat and sunglasses on. I walked up and chatted for a second and then went inside to get some coffee and something to eat. When I came out he had a sad look on his face. I couldn't see his eyes behind his sunglasses. I asked what was wrong- he said he was feeling sick. I felt his forehead and thought he felt warm and asked him if he wanted to go to the doctors right then and he said no- he wanted to go home and see if he had a temperature. When we got home he took his temp and it was low, near normal. I thought we had narrowly escaped illness again, and I proceeded to clean our bedroom, bleach counters and talk of how we would stay home where it was safe.
I worked outside for a while and steve layed on the couch. He moved upstairs to lay on the bed and when I went up to see him he said he had a terrible pain in his rib area. I thought it was a side affect of his growth factor shots and gave him some morophine. I put a cold washcloth on his head. I rubbed his chest and back to relax him- in case the pain was anxiety.
After a while I pursuaded him to lay downstairs with me and I put in a movie "the sweet lands". We watched the whole movie on the couch and his parents stopped by at some point.
After the movie I went outside and cried because I was so scared that today felt different and how sad Steve looked. I thought I talked to someone on the phone but I can't remember for sure.
It was just after 5pm when he got a fever. It was 101.8 when I called Dr G. It went up to 102.8 in the half hour we waited at home to hear what room he would be checked into at Swedish. Steve said he thought he'd need a wheel chair when we got there. I was like WHAT? I asked if he could walk to the car. I asked if we should leave for the emergency room instead of waiting any longer. I packed steve's backs for the hospital as always- made sure to get his computer and slippers. When we heard from Dr G Steve walked to the car and we started driving. I told Steve his parents were meeting us there, and he said "at the condo?". I told him he had to fight- he had to take care of me.
I feel so selfish for worrying about myself. We never talked about how he could die since he was first diagnosed. I was so upset after the appointment where we learned his graft had failed- but still we never talked more about it. Instead we planned each day, talked about what a second transplant would be like. He was a ticking timebomb.
---saved the rest of this in a file so no one else would have to read it.
Sunday, June 21, 2009
bad dream
I think I'm sort of living the bad dream. Steve died a little more than 2 weeks ago and I had a bad dream last night that I was dying. Steve was there, and I'm not sure if he was sick but I was dying and there were only a few treatment options and they were likely not to work and I had about one and a half weeks they suspected.
I probably feel like I'm dying. Many times I've thought I could easily miss something wrong with myself because I didn't want to go to any extra doctors appointments for myself. I have an appt now but it hardly seems important.
I went to the grocery store today. Just running out and needing a few things isn't easy. I cried at the store. They played Ingrid Michaelson, "the way I am" who iLike invited to play in the office and I walked up there that day and listened with all of them. I cried at the grocery store because of Ingrid Michaelson. I cried at cindy's because it was fathers day and we were all there without Steve. I cried giving Reg the fathers day card I picked for him that I signed Steve's name to.
I texted with George today.
I figured out how to see my iTunes library on the iMac from the Vaio. I don't feel like doing anything really.
I cry almost every time I drive because Steve loved to drive the Audi.
Everything I try to do takes forever because I forget what I'm doing about 20 times for each task. I had to take all the coffee beans out of the coffee grinder- luckily that seemed to fix it. Feels like everything will break now because Steve isn't around to help me fix it- even though both of us fixed things.
When you cry you lose your appetite. You also can't taste anything. Even if you cry when there's food in your mouth already you suddenly can't taste it. just fyi, if you need to eat, you should do it before or after crying and if possible not during.
I probably feel like I'm dying. Many times I've thought I could easily miss something wrong with myself because I didn't want to go to any extra doctors appointments for myself. I have an appt now but it hardly seems important.
I went to the grocery store today. Just running out and needing a few things isn't easy. I cried at the store. They played Ingrid Michaelson, "the way I am" who iLike invited to play in the office and I walked up there that day and listened with all of them. I cried at the grocery store because of Ingrid Michaelson. I cried at cindy's because it was fathers day and we were all there without Steve. I cried giving Reg the fathers day card I picked for him that I signed Steve's name to.
I texted with George today.
I figured out how to see my iTunes library on the iMac from the Vaio. I don't feel like doing anything really.
I cry almost every time I drive because Steve loved to drive the Audi.
Everything I try to do takes forever because I forget what I'm doing about 20 times for each task. I had to take all the coffee beans out of the coffee grinder- luckily that seemed to fix it. Feels like everything will break now because Steve isn't around to help me fix it- even though both of us fixed things.
When you cry you lose your appetite. You also can't taste anything. Even if you cry when there's food in your mouth already you suddenly can't taste it. just fyi, if you need to eat, you should do it before or after crying and if possible not during.
Thursday, January 8, 2009
new year
I am very excited about the new year. I'm also scared, but it's still a time of great change and possibility. Each new year I generally give something up- diet wise. In prior years it has been meat. I never went overboard on it- sometimes I would still eat meat if at a friends house for dinner, but I would try to keep it in mind and add another day on to my commitment for things like that.
This year I found a new years program on body and soul magazine (www.wholeliving.com). I bought the magazine for the flight back from LA prior to new years and only came across this 5 week challenge last sunday night. I was like- oh yah, it's the new year! time for a challenge!
I admit I haven't been able to follow through with some of the challenges so far. Monday I actually started the diet early when my mom showed up with whole grains for breakfast for the week. I had a little maple syrup (probably a teaspoon) on it. I haven't had lemon water every day but I have had brown rice and beans and veggies at least one meal a day, and whole grains for breakfast all week. I have more energy, I feel more calm, I have less cravings and feel more full. And I think I'm already losing weight. I've successfully lost weight with weight watchers before, and I could chose that program again, but I don't feel like I can handle all the rules right now with my other responsibilities. Sometimes you just need to eat. My goal will be to have enough healthy foods around that I can eat healthy and it will be convenient because I was prepared.
Though I haven't been able to exercise as they have recommended, but I'll try to do that soon too. Hopefully spring will come and it will be easier then.
This year I found a new years program on body and soul magazine (www.wholeliving.com). I bought the magazine for the flight back from LA prior to new years and only came across this 5 week challenge last sunday night. I was like- oh yah, it's the new year! time for a challenge!
I admit I haven't been able to follow through with some of the challenges so far. Monday I actually started the diet early when my mom showed up with whole grains for breakfast for the week. I had a little maple syrup (probably a teaspoon) on it. I haven't had lemon water every day but I have had brown rice and beans and veggies at least one meal a day, and whole grains for breakfast all week. I have more energy, I feel more calm, I have less cravings and feel more full. And I think I'm already losing weight. I've successfully lost weight with weight watchers before, and I could chose that program again, but I don't feel like I can handle all the rules right now with my other responsibilities. Sometimes you just need to eat. My goal will be to have enough healthy foods around that I can eat healthy and it will be convenient because I was prepared.
Though I haven't been able to exercise as they have recommended, but I'll try to do that soon too. Hopefully spring will come and it will be easier then.
Thursday, October 9, 2008
am I dressed?
some days I'm so tired. Today I raced from work to meet Steve at chemo and he was ahead of schedule, which meant less time sitting in the uncomfortable chair. Then I walked over to his office to get the car since it was raining and he didn't bring a jacket. Lucky I had a jacket. It was a nice walk actually and way less trouble walking then on the way back driving the car (as everything is on first hill/cap hill). So I was so tired I tried to take a nap and couldn't really sleep. I've noticed I get really super thirsty when I'm tired- or I'm getting tired because I'm super thirsty. But all I want is coffee and tea and it's fall and you need warm drinks. Anyway, the most mundane tasks have a dream like quality to them now. I'm not really there. I stand at the counter with a clerk and the first thing he says is that he needs my blockbuster card. I suddenly wonder if I got out of the house with close on. I have to look down to make sure I'm not wearing pajamas. Sometimes I think I could get to work with pajamas on. I'm happy to get to work whenever I get there, and luckily that's been enough. Sometimes I feel sad when I get there because I feel it's the safest place to be sad. It's the little hiding place from my personal life. Though I feel bad when I realize not everyone can handle hearing about all the medical stuff. Lots of people think it's gross and I can't remember how much you can pick up stress from other people. They say it's worse for other people. That is, for me and steve's family it can be worse because it's not happening to us, and then for my coworkers it must be worse because they only see me and what's happening to me. It seems kind of creepy.
I felt a couple months ago like my life stopped. Like I couldn't worry about whether I was fat or exercised or if the bills were paid because I would be happy to survive it. Now I think more about when we will be returning to normal life. Like we're on this bell curve, getting closer to the middle, which in turn means we're closer to the end. It's possible we really will be able to look at this and think it was 1 year of many and it's in the past. Though that could be more of an optimistic thought. I worry about having the kind of energy necessary to make larger changes in our lives, like diet changes. Surviving on food from the cafeteria next door is great for me but I'll be cooking a lot soon enough and that is a strain if you're working. It's hard to think about the extra chores even now when I'm working and trying to do some of them. I think it will end up being necessary to take the time away from work to be able to do it all, without just being exhausted. It's hard not to get sucked into the fall slump around here and just want to stay indoors where it's warm. Please take me outside, but aim for the 10min where it's sunny ok?
I felt a couple months ago like my life stopped. Like I couldn't worry about whether I was fat or exercised or if the bills were paid because I would be happy to survive it. Now I think more about when we will be returning to normal life. Like we're on this bell curve, getting closer to the middle, which in turn means we're closer to the end. It's possible we really will be able to look at this and think it was 1 year of many and it's in the past. Though that could be more of an optimistic thought. I worry about having the kind of energy necessary to make larger changes in our lives, like diet changes. Surviving on food from the cafeteria next door is great for me but I'll be cooking a lot soon enough and that is a strain if you're working. It's hard to think about the extra chores even now when I'm working and trying to do some of them. I think it will end up being necessary to take the time away from work to be able to do it all, without just being exhausted. It's hard not to get sucked into the fall slump around here and just want to stay indoors where it's warm. Please take me outside, but aim for the 10min where it's sunny ok?
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