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!
Tuesday, June 30, 2009
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.
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