As November ends, I can't help but wonder if this is the last November you'll have. What a strange feeling that is. I have always come to the end of a month without giving a moment's thought to whether or not I'll ever see that month again. Have you thought of that?
Today was the day you were supposed to give your working dog away. I had arranged for Carmi to drive with you in case you got tired for some reason. We brought the dog in last night, and you ended up leaving me in the bedroom with the dog while you slept in the middle bedroom. That animal woke me up twice during the night trying to get out of the bedroom and into the kitchen. By morning you had realized you couldn't give him away. It would have been like taking a part of you. Your initial altruism was being supplanted by your own needs. What had started as a desire to do what was best for the dog was now changing. The dog helps you, so he will stay. The woman who is taking him understood completely and will take him whenever you are willing to let him go. After all, she is a nurse.
I convinced Dad's doctor to put him in the care center where he was last year. It took all day to get the placement, but he will be there for a while and Carmi will go there to be with him every day. She will work shortened hours; we'll figure it out.
Principal J asked to talk to me today. I wondered if I was in trouble or if he was going to ask me to do something, He just wanted me to know that he knew about you. People are passing around the news. I know they think they are acting in my best interests but I feel uncomfortable about it. J said he wanted to be supportive of me during this time. I thanked him. We spoke for a long time. I told him about Dad. He was stunned. I worked with Caro on BTSA, the one thing that could slip through the cracks if I don't get back on the stick.
D's sister had recommended a place in Mexico she had heard about on some news broadcast. It's a place where people go to get 'detoxed'; I hope it's not one of those places that takes your money and promises you the moon. What we don't need is a snake oil salesman. I put some emails out to people asking if they had heard about this place. I am worried we'll get put in a position where we are getting taken advantage of by swindlers but going ahead and doing it because we don't want to miss out on the 'cure'.
Monday, November 30, 2009
Sunday the 29th
I skipped church. I wanted to go to the evening service, an outstanding worship experience I rarely get to attend, and because Dad was in the hospital I would be able to get there today. He doesn't like the service, the music, the crowd, the casualness, and can't go anyway because it's in the basement level and there are several stairs.
I woke up at 4:00 a.m. That's the downside to getting rid of the flu: the return of insomnia. I spent the morning doing the final phases of my housecleaning. The counter tops are done, at least in the kitchen, and there is enough clean underwear to last the week.
We went to the mall to try to get a zip-up hoodie for you. They had been on sale for $10 on Saturday but today they were $24.50. You selected three items while I waited in line, then I paid for the items and you waited for me in the car. You had made a whey protein drink for lunch and it wasn't settling well. When we got home, you had your first emesis in weeks; that whey protein stuff just doesn't work for you. Everything else has stayed down, and you've taken some risks with eating, always pushing the limits, always wanting to see how far you can go. I once had a therapist say you are the kind of person who's always standing around stop signs, her words for people who test the limits. And she was completely right.
The beauty of today was the quiet. It was the first day in over a year when we were alone at home. Just the two of us. No Laura. No Dad. No Carmi. No one. The quiet was a remarkable sensation. It was so still, so peaceful, so restful. Last evening, as I sank into the quiet, I felt the need for Dad to be out of the house for a while. This quiet could be healing.
I visited Dad in the hospital. Again, my disappointment in that hospital mounted. The controls for his tv and the nurse call button don't work. I had to use the one from the other bed for him. I had thought they would leave the other bed empty because filling it would put Dad in a situation where he wouldn't have any control over the tv or any way to contact the nurses for help. I was wrong. When I arrived this afternoon, another patient had been moved in. Dad was finishing his course of IV antibiotics. He is pretty lucid now. I brought him mail and lots of catalogs to read. He hadn't had any visitors----or so he thought----but it turns out that Pastor Rick had gone by while he was asleep. I want to get ahold of the doctor before he finishes his rounds tomorrow morning. He has been on vacation, and I want to let him know that I think Dad should go to a skilled nursing facility before he comes home. He has balance and dizziness. This could give us the peace and quiet we need for a while.
When I returned from the hospital I was too tired to go back to town for the evening church service. I am sad but getting up at 4:00 a.m. makes 6:00 p.m. feel like bedtime.
I woke up at 4:00 a.m. That's the downside to getting rid of the flu: the return of insomnia. I spent the morning doing the final phases of my housecleaning. The counter tops are done, at least in the kitchen, and there is enough clean underwear to last the week.
We went to the mall to try to get a zip-up hoodie for you. They had been on sale for $10 on Saturday but today they were $24.50. You selected three items while I waited in line, then I paid for the items and you waited for me in the car. You had made a whey protein drink for lunch and it wasn't settling well. When we got home, you had your first emesis in weeks; that whey protein stuff just doesn't work for you. Everything else has stayed down, and you've taken some risks with eating, always pushing the limits, always wanting to see how far you can go. I once had a therapist say you are the kind of person who's always standing around stop signs, her words for people who test the limits. And she was completely right.
The beauty of today was the quiet. It was the first day in over a year when we were alone at home. Just the two of us. No Laura. No Dad. No Carmi. No one. The quiet was a remarkable sensation. It was so still, so peaceful, so restful. Last evening, as I sank into the quiet, I felt the need for Dad to be out of the house for a while. This quiet could be healing.
I visited Dad in the hospital. Again, my disappointment in that hospital mounted. The controls for his tv and the nurse call button don't work. I had to use the one from the other bed for him. I had thought they would leave the other bed empty because filling it would put Dad in a situation where he wouldn't have any control over the tv or any way to contact the nurses for help. I was wrong. When I arrived this afternoon, another patient had been moved in. Dad was finishing his course of IV antibiotics. He is pretty lucid now. I brought him mail and lots of catalogs to read. He hadn't had any visitors----or so he thought----but it turns out that Pastor Rick had gone by while he was asleep. I want to get ahold of the doctor before he finishes his rounds tomorrow morning. He has been on vacation, and I want to let him know that I think Dad should go to a skilled nursing facility before he comes home. He has balance and dizziness. This could give us the peace and quiet we need for a while.
When I returned from the hospital I was too tired to go back to town for the evening church service. I am sad but getting up at 4:00 a.m. makes 6:00 p.m. feel like bedtime.
Saturday, November 28, 2009
Is It Saturday Already???
Last night I posted an email to a lot of people I know, telling them about Dad being in the hospital. People keep asking how they can help me, so I thought one way they can do it is by visiting Dad in the hospital. And today he had five visitors. I couldn't get there until after 7:00 p.m.
I had tried to clean the house but my cell phone kept ringing. I got very little done. Tomorrow I will finally clean those counter tops, and then maybe I'll feel it's sufficient. You could care less about cleaning. When we met, you thought the brush attachment on the vacuum cleaner was for dusting. Your apartment was layered in dust and there were spots on the kitchen ceiling from you turning on the blender without the lid. You had worked hard to clean your place before I first saw it, so your normal clutter and dirt had been cleaned up. Since then, any cleaning has been my job. When Florinda started in 1993, she basically saved our marriage. Up until then I had done some house cleaning every day, and I was tired of it, especially since it only mattered to me, and if it didn't matter to you, you weren't going to participate in it.
I had also gone to the grocery, and then Laura and boyfriend returned, much to my surprise and joy.
Today you went shopping by yourself. You found clothes on sale, for great prices, and you had really needed them. After losing 48 pounds over the last seven months (the last 30 being more or less involuntary), you didn't own one thing that really fit you. You got two new pairs of pants and five shirts. I don't know if shopping is something I want you to do, but seeing you have the energy to shop is heartening.
Laura, Kyle and I went to the cell phone store to activate a new phone. It occurred to me that a motivating factor in their returning here was the new cell phone that had arrived yesterday. Hers had been acting up and Kyle, with his powers of persuasion, had arranged for the company to send out the newer model. She was really anxious to get it. The cell phone store wasn't much help; that particular store never is. They always seem to refer me to 'corporate' stores. The kids dropped me back at the house so we could go on a bike ride while they went on to one of the corporate stores. You tried your bike for the first time since early October. I took off ahead of you and you rode for 13 minutes. When I came back after 35 minutes, you were resting in the van. Your energy level tomorrow will let us know whether or not that had been a good decision.
The kids returned with Tito's tacos, I showered and washed my hair so Laura could blow it out for me, you showed Kyle how to use his new camera, and then I finally got to the hospital to see Dad. It's funny how a day off can get so short on time!
I had tried to clean the house but my cell phone kept ringing. I got very little done. Tomorrow I will finally clean those counter tops, and then maybe I'll feel it's sufficient. You could care less about cleaning. When we met, you thought the brush attachment on the vacuum cleaner was for dusting. Your apartment was layered in dust and there were spots on the kitchen ceiling from you turning on the blender without the lid. You had worked hard to clean your place before I first saw it, so your normal clutter and dirt had been cleaned up. Since then, any cleaning has been my job. When Florinda started in 1993, she basically saved our marriage. Up until then I had done some house cleaning every day, and I was tired of it, especially since it only mattered to me, and if it didn't matter to you, you weren't going to participate in it.
I had also gone to the grocery, and then Laura and boyfriend returned, much to my surprise and joy.
Today you went shopping by yourself. You found clothes on sale, for great prices, and you had really needed them. After losing 48 pounds over the last seven months (the last 30 being more or less involuntary), you didn't own one thing that really fit you. You got two new pairs of pants and five shirts. I don't know if shopping is something I want you to do, but seeing you have the energy to shop is heartening.
Laura, Kyle and I went to the cell phone store to activate a new phone. It occurred to me that a motivating factor in their returning here was the new cell phone that had arrived yesterday. Hers had been acting up and Kyle, with his powers of persuasion, had arranged for the company to send out the newer model. She was really anxious to get it. The cell phone store wasn't much help; that particular store never is. They always seem to refer me to 'corporate' stores. The kids dropped me back at the house so we could go on a bike ride while they went on to one of the corporate stores. You tried your bike for the first time since early October. I took off ahead of you and you rode for 13 minutes. When I came back after 35 minutes, you were resting in the van. Your energy level tomorrow will let us know whether or not that had been a good decision.
The kids returned with Tito's tacos, I showered and washed my hair so Laura could blow it out for me, you showed Kyle how to use his new camera, and then I finally got to the hospital to see Dad. It's funny how a day off can get so short on time!
Turkey at Last!
I would be lying if I said I wasn't upset about our cancelled Thanksgiving plans. The highlights of recent years have included every time we've been with my siblings and their families. I see them far more than you because I have that 'chick thing' I do during the summers and those 'runaway weekends' when I just drive up north to see them. You have only joined me on the holidays, and Thanksgiving is your favorite. After a fabulous meal, we play games. We play Balderdash and Scattergories and Pictionary. There are other games too. Once my siblings discovered that Trivial Pursuit was the only game I could kill them playing, they were willing to play with me again. I don't win those other games, so I think they have lowered my status from 'most brilliant person in the world' to something more akin to 'kind of smart person'. I knew they would be doing fantastically wonderful things together and laughing so hard they would cry. I knew the conversations would be fun and interesting and the day would have been filled with love, comfort and laughter. Sitting in the hospital with Dad and having a highly salacious turkey pot pie by myself at 7:00 p.m. was not the way I had wanted to spend the day but I wasn't having a pity party. Here's where my faith comes in. I believe God loves me and has a plan for me. I believe He will stay with me and, if I am lucky, two things will happen: 1)I will be strong enough to withstand what is happening to you and Dad and, 2), this will be the most difficult trial He ever puts me through. If #2 is true, I will feel far more blessed that I do already. And I do feel blessed, extremely blessed.
Sometime during the day today (Friday) you mentioned that David had invited us to dinner. Then you said it was his Thanksgiving dinner. His children had spent Thursday with their respective mothers, and they were having Friday turkey dinner at his house. I called and asked if I could bring corn pudding, the dish I had planned to make for our own Thanksgiving dinner. I cleaned a bit, rode my bike, visited Dad in the hospital, and baked the corn pudding. I had to make a mayday call to Suzin to find out if I was supposed to cook it covered but the dish turned out to be delicious. Katy, Laurie, Nancy and David's more fun friends turned out to be there. We had a great time. The decor was 'hangloose' as always but it was fun and relaxed. David's cousin was there, and she works for a medical marijuana collective. She was quite an interesting person and filled me in on more medical marijuana information than I knew existed. She said that both my 'boys' qualified for it. You wouldn't get 'highs' from it; you'd both get pain relief, and you would also get some tumor shrinkage. When I left, she gave me her card. On it was a picture of the facility. It's beautiful. There's a lounge for people who want to use their 'medication' onsite instead of taking it home. I wonder if you'll go for the idea.
You went home ahead of me, not really saying your goodbyes when you left, as is your style. I stayed until almost nine. I was so glad to have finally had a Thanksgiving dinner and people with whom to share it.
Sometime during the day today (Friday) you mentioned that David had invited us to dinner. Then you said it was his Thanksgiving dinner. His children had spent Thursday with their respective mothers, and they were having Friday turkey dinner at his house. I called and asked if I could bring corn pudding, the dish I had planned to make for our own Thanksgiving dinner. I cleaned a bit, rode my bike, visited Dad in the hospital, and baked the corn pudding. I had to make a mayday call to Suzin to find out if I was supposed to cook it covered but the dish turned out to be delicious. Katy, Laurie, Nancy and David's more fun friends turned out to be there. We had a great time. The decor was 'hangloose' as always but it was fun and relaxed. David's cousin was there, and she works for a medical marijuana collective. She was quite an interesting person and filled me in on more medical marijuana information than I knew existed. She said that both my 'boys' qualified for it. You wouldn't get 'highs' from it; you'd both get pain relief, and you would also get some tumor shrinkage. When I left, she gave me her card. On it was a picture of the facility. It's beautiful. There's a lounge for people who want to use their 'medication' onsite instead of taking it home. I wonder if you'll go for the idea.
You went home ahead of me, not really saying your goodbyes when you left, as is your style. I stayed until almost nine. I was so glad to have finally had a Thanksgiving dinner and people with whom to share it.
Thursday, November 26, 2009
Turkey Day
I woke to you saying, "Your dad wants you to take him to the emergency room." I looked at the clock; it was 6:00 a.m. "Why?" I asked. "He thinks he has pneumonia." Dad has had pneumonia at least five times, and his mother died of it when he was ten. We don't mess around with pneumonia in our family; we're all afraid of it. "He's ready to go. He and Carmi are having coffee now." Hmmmmm, I guess my Thanksgiving could get worse. It was shot anyway, so I wasn't going to stress over one more crisis. We got to the ER a little after 7:00 and he was in and out of lucidity. He would be docile and cooperative, then he would lie about his medical history ("I had a little stroke." No, you didn't!), then he would become agitated and start yelling for someone to take care of him, then he got off the gurney and dressed himself only to pee on his pants while trying to relieve himself in the wastebasket. Yikes! What a head trip. The PA came out to speak to me. She had run several tests and really couldn't find anything wrong with him. I explained that he had a cough for which he had been given codeinated cough syrup but he had refused to take it because it would constipate him. Then the relief caregiver had thought it was the antibiotics he was refusing to take, and didn't give him his antibiotics last weekend, so the cold and cough were back and keeping him awake all night----and he was on antibiotics again but still drinking a glass of chardonnay every evening. I said that in addition to the delusions, his balance had become increasing poor, that he has been wobbly and has to lean against the wall. She didn't know a reason for the crazy behavior but thought it might be something called 'sundowning', a type of confusion and agitation sometimes seen in the elderly that comes on at night. Then I told her my husband had just been diagnosed with pancreatic cancer and had just had a duodenal bypass. Her eyes widened, and she 'got' it. She said she'd call the doctor and see if Dad could be admitted.
Dad was admitted. As soon as I found out, I called David to let him know so he wouldn't come over for Thanksgiving. I got his machine. My cell phone was dying and I told you that David might be showing up. He did, and you sent him on over to the hospital. By that time Dad was in his room in the new wing, and Carmi and I were worn out.
I came home. I made us some hamburgers and I fell asleep while you stayed out in the family room. When I woke up you came in to rest and I took the van to go (finally) for a bike ride. Thirty minutes was a good workout for me, and I will get used to riding by myself. Thanksgiving Dinner didn't happen this year but I believe I will have many more Thanksgivings in my future.
Dad might be in the hospital for three days but I hope they will move him over to the health facility again for some time in physical therapy and recuperation before sending him back home. That would give me time to be alone with you, and you privacy and time to heal. He's in and out of lucidity now.
Dad was admitted. As soon as I found out, I called David to let him know so he wouldn't come over for Thanksgiving. I got his machine. My cell phone was dying and I told you that David might be showing up. He did, and you sent him on over to the hospital. By that time Dad was in his room in the new wing, and Carmi and I were worn out.
I came home. I made us some hamburgers and I fell asleep while you stayed out in the family room. When I woke up you came in to rest and I took the van to go (finally) for a bike ride. Thirty minutes was a good workout for me, and I will get used to riding by myself. Thanksgiving Dinner didn't happen this year but I believe I will have many more Thanksgivings in my future.
Dad might be in the hospital for three days but I hope they will move him over to the health facility again for some time in physical therapy and recuperation before sending him back home. That would give me time to be alone with you, and you privacy and time to heal. He's in and out of lucidity now.
Wednesday, November 25, 2009
T Day Minus One
For as difficult as my students were yesterday, they were angelic and cooperative today. They listened, they followed directions. What had been like swimming against a riptide yesterday was like taking a lap in a short pool today. Three students were absent but they weren't conspicuous, not the usual suspects. We had a minimum day. At lunch Laura and boyfriend came to visit, hoping to catch my students before they went home. She is such an astute observer of children. She can capture their little personalities in a matter of minutes. She gives valuable input. But there wasn't any classtime left, so she headed off to get some sandwiches. I left school shortly after the children only to notice that someone had scraped the car in the staff parking lot. Darn!
I got home right after 1:00. You were sitting in the family room waiting for Laura, not knowing where she had gone. I said she had gone to get the best sandwiches in the world. She came home shortly after that bringing me a roast beef, my favorite, which I tried not to eat too fast. You asked for a few bites and I gave you the last of it, but then your stomach started hurting. You wanted to go to the tee short store to buy some long-sleeved tees and then pick up some pain medication. First you needed to rest a while. When you lie down on your left side the pain will diminish. One of the three Roses in my life came by with some Ensure she had. We chatted and you were then ready to go. I guess Rosie stayed too long. As I was walking her out, another Rose drove up to see how you were doing. She had been ill and didn't know you were home from the hospital. As she was looking at you in shock, you went into the house to get some water. When you came out, one of the little teacups tried to follow you, and the security screen door slammed on her. She screamed like she was dying. Oh, it was horrible! The shrieking was unnerving and we were all worried she had a broken bone. At that point you became livid. You took off in the car, with me in the passenger seat, speeding down the street, rocking wildly over the speed bumps. and cursing. Cursing again. Blaming the dogs, blaming Laura for not watching them closely enough, blaming me for not perceiving your desire to leave when Rosie was here but never blaming yourself for not being careful, not accepting your pain and the how it makes you feel weak, frail, out-of-control, tired, and unable to concentrate. You railed that you shouldn't have counted on anyone (??). I guess that was to make me feel bad for not reading your mind. "Didn't you know I wanted to leave when Rosie was there? Why did you sit down and talk with her? And she was talking about hibachis! I didn't want to hear about hibachis!"
"Okay," I said. "You want to blame me because I didn't realize you wanted to leave then. But I didn't know it. I'm sorry but I know that won't be enough for you. You want to rail on me. So have at it. Go to town. Knock yourself out." I guess that deflated you. You couldn't do it. You were remarkably quiet for the rest of the ride. You need to watch your temper.
You didn't acknowledge me at the tee shirt store. It's your small attempt at being in control, at hurting me. That won't work anymore but you keep trying, probably because it used to work years ago. You bought a couple of shirts. When we left the store, I offered to drive. You declined. Then you started down Sepulveda. Turning left onto Slauson you ran the light. FLASH! Smile, you're on Culver City Camera. Those were a couple of expensive tee shirts you said. Yea, really expensive tee shirts, and I'll probably end up paying for your ticket. You better be taking your meds because I'm not signing on for another manic episode. This cancer is enough.
The evening was wacky. I told Laura and boyfriend they were my Thanksgiving celebration, and Laura was doing her best to rise to the occasion. They went with me to the store, bought me an ice cream at Rite-Aid, and even put the groceries away. Then Laura spent three hours recoloring my hair and adding highlights and lowlights. It came out beautifully, and she was exhausted by the time it was all over. Boyfriend took a picture of the two of us with my phone when we were done. Laura made it my screensaver, and I'm sure there's some way I can send it out to people now that I have photos and internet on this new phone. We didn't go to bed until almost 1:00.
Dad seemed to be hallucinating this evening. It was identical to when he was septic a year ago August. He kept clutching in the air for objects that weren't there, grabbing as if catching fireflies. Then he would close his eyes and we'd think he was asleep, then open them again and start talking in a string of non-sequitors. "We had to pay someone under the table to get Norbert in. A guy named Dave. We gave him a thousand dollars. No one in Spokane knows about it. They're not coming down for this anyway. That Carmi; she's great. Does she want to be cremated? Do you know what kind of arrangements she's made? What's that noise on the second floor? Mr. Moon is here. He's right in the room." And on and on it went. Norbert wasn't from Spokane, Carmi's very much alive, Mr. Moon has been dead for many years, and we don't have a second floor. At midnight he had Carmi get him up and bring him out to the kitchen where Laura was finishing my hair. He thought it was time for breakfast. He was still sitting in the front room awake, asleep, awake, asleep, talking nonsense when I went to bed.
It had been a very strange day.
I got home right after 1:00. You were sitting in the family room waiting for Laura, not knowing where she had gone. I said she had gone to get the best sandwiches in the world. She came home shortly after that bringing me a roast beef, my favorite, which I tried not to eat too fast. You asked for a few bites and I gave you the last of it, but then your stomach started hurting. You wanted to go to the tee short store to buy some long-sleeved tees and then pick up some pain medication. First you needed to rest a while. When you lie down on your left side the pain will diminish. One of the three Roses in my life came by with some Ensure she had. We chatted and you were then ready to go. I guess Rosie stayed too long. As I was walking her out, another Rose drove up to see how you were doing. She had been ill and didn't know you were home from the hospital. As she was looking at you in shock, you went into the house to get some water. When you came out, one of the little teacups tried to follow you, and the security screen door slammed on her. She screamed like she was dying. Oh, it was horrible! The shrieking was unnerving and we were all worried she had a broken bone. At that point you became livid. You took off in the car, with me in the passenger seat, speeding down the street, rocking wildly over the speed bumps. and cursing. Cursing again. Blaming the dogs, blaming Laura for not watching them closely enough, blaming me for not perceiving your desire to leave when Rosie was here but never blaming yourself for not being careful, not accepting your pain and the how it makes you feel weak, frail, out-of-control, tired, and unable to concentrate. You railed that you shouldn't have counted on anyone (??). I guess that was to make me feel bad for not reading your mind. "Didn't you know I wanted to leave when Rosie was there? Why did you sit down and talk with her? And she was talking about hibachis! I didn't want to hear about hibachis!"
"Okay," I said. "You want to blame me because I didn't realize you wanted to leave then. But I didn't know it. I'm sorry but I know that won't be enough for you. You want to rail on me. So have at it. Go to town. Knock yourself out." I guess that deflated you. You couldn't do it. You were remarkably quiet for the rest of the ride. You need to watch your temper.
You didn't acknowledge me at the tee shirt store. It's your small attempt at being in control, at hurting me. That won't work anymore but you keep trying, probably because it used to work years ago. You bought a couple of shirts. When we left the store, I offered to drive. You declined. Then you started down Sepulveda. Turning left onto Slauson you ran the light. FLASH! Smile, you're on Culver City Camera. Those were a couple of expensive tee shirts you said. Yea, really expensive tee shirts, and I'll probably end up paying for your ticket. You better be taking your meds because I'm not signing on for another manic episode. This cancer is enough.
The evening was wacky. I told Laura and boyfriend they were my Thanksgiving celebration, and Laura was doing her best to rise to the occasion. They went with me to the store, bought me an ice cream at Rite-Aid, and even put the groceries away. Then Laura spent three hours recoloring my hair and adding highlights and lowlights. It came out beautifully, and she was exhausted by the time it was all over. Boyfriend took a picture of the two of us with my phone when we were done. Laura made it my screensaver, and I'm sure there's some way I can send it out to people now that I have photos and internet on this new phone. We didn't go to bed until almost 1:00.
Dad seemed to be hallucinating this evening. It was identical to when he was septic a year ago August. He kept clutching in the air for objects that weren't there, grabbing as if catching fireflies. Then he would close his eyes and we'd think he was asleep, then open them again and start talking in a string of non-sequitors. "We had to pay someone under the table to get Norbert in. A guy named Dave. We gave him a thousand dollars. No one in Spokane knows about it. They're not coming down for this anyway. That Carmi; she's great. Does she want to be cremated? Do you know what kind of arrangements she's made? What's that noise on the second floor? Mr. Moon is here. He's right in the room." And on and on it went. Norbert wasn't from Spokane, Carmi's very much alive, Mr. Moon has been dead for many years, and we don't have a second floor. At midnight he had Carmi get him up and bring him out to the kitchen where Laura was finishing my hair. He thought it was time for breakfast. He was still sitting in the front room awake, asleep, awake, asleep, talking nonsense when I went to bed.
It had been a very strange day.
Tuesday, November 24, 2009
Shattered Plans
What a tough and disappointing day this was! At work I felt I was swimming against a riptide. You know how when you get in one, you remember there's a way to get out of it but it takes a while for the memory to clear itself so you can do it? Don't swim right to the shore, swim diagonally. That's the way it is with kids. Don't come right at them about their crappy behavior, maneuver your way around it by praising the ones doing the right thing, bring them into your activities by engaging them and ignoring the inappropriate behavior. Today that was difficult for me. The principal came into the room and asked me to start a paper trail on one of my little guys. He popped up on their radar yesterday when he was hitting and slapping on the playground and wouldn't cooperate with the yard duty aides. Then principal J went out to get him and he refused to come with him. Principal J and the Assistant Principal told me my little guy was going to have to be in the office at lunch for the rest of the week. Today Principal P was in at lunch. She told my little one to come in to her office and he refused. She came in and told me she wants me documenting his behavior. The first grade teacher who has his brother is having a similar experience. Mom hasn't returned the consent for help for our onsite counseling to work with him. I am sending another one home with my little guy. My new, homeless child, is demonstrating the same oppositional defiant behavior. And the twins were at the top of their game with whining and tattling today. Is it the holiday? I really hope so because I won't be here as consistently as I'd like to this year and, if they're a group that needs babysitting all the time, it's going to be hell when I'm gone.
You had the woman come by who will be taking Matt. You were with her for two and a half hours. When you were done, you were so tired you couldn't even eat. By the time I got home at 4:00, you had been in bed for almost five hours and you were still weak. I called the hotel in Sonoma to verify our reservations and to tell them we were going to have dogs in one of our rooms. Fifteen minutes later you called me into the room, turned off the tv, and said we needed to talk. You said you couldn't go up north for Thanksgiving. You were so totally exhausted by the two hours with L that there was no way you would be able to travel several hours by car, stay in a hotel room with me, and be at my sister's with so many other people. You said your first priority now is to get strength back. You said you can't do anything that will get you off-track, anything that could confuse the issue, put obstacles in the way of you regaining strength and putting some weight back on. You told me you have continued to lose weight. You now weigh 156 lbs. You had been able to maintain 158 for a few days but you have started losing weight again. You said you can't go on the trip. You need to stay at home, rest, eat when you can, sleep when you can, and do whatever it is your body needs. Now you have to change your goal. Your goal is now to get yourself in a position to go to Idaho for Christmas. That's what you really want to do. You wanted me to go up north for Thanksgiving anyway; there was no reason why your health should keep me from enjoying Thanksgiving with my family. But this year Thanksgiving wasn't going to be about the food and the family. This year Thanksgiving was going to be for you, a time when we all gathered together and were there for you. This year we had set aside our own personal wishes to be supportive of you and your battle with cancer. There is no way I am going away at Thanksgiving and leaving you here. Yes, we've done that in the past. We've even had Christmases apart. But this time we need to be together. This time we don't have an unknown number of Christmases or Thanksgivings ahead of us. It is likely that this will be our last Thanksgiving with you on this earth. The number feels so finite, and I am not willing to waste it.
I called my sister, the hostess, and she understood. Being a paramedic, she has a tremendous grasp of health issues, and tuned into yours immediately. She was most gracious about your realization that you can't go. She seemed to accept it more easily than I. My brother and other sister also understood, and all expressed having had a concern that this might happen. Laura, on the other hand, forgot that this wasn't about her. She forgot that your health had been the reason for making the plans in the first place. She cried, she raged, she called you on your cell phone, and haranged you about this sudden, unexpected change in plans. She talked to boyfriend, called again, talked some more, called back. This is where she is still nineteen and can't get out of her own needs. How could we do this to her after she had made so many changes in her plans? Were we also going to do this to her at Christmas? I said it might happen then too. Your health isn't what anyone wants it to be. It's out of our control.
We will stay here and take things slowly. You will stay in bed. We will have a little dinner with Dad and David. Laura and boyfriend will go to his grandmother's in the desert after they spend a couple of days with us. We'll adjust. Cancer will bring many more disappointments, I'm sure.
You had the woman come by who will be taking Matt. You were with her for two and a half hours. When you were done, you were so tired you couldn't even eat. By the time I got home at 4:00, you had been in bed for almost five hours and you were still weak. I called the hotel in Sonoma to verify our reservations and to tell them we were going to have dogs in one of our rooms. Fifteen minutes later you called me into the room, turned off the tv, and said we needed to talk. You said you couldn't go up north for Thanksgiving. You were so totally exhausted by the two hours with L that there was no way you would be able to travel several hours by car, stay in a hotel room with me, and be at my sister's with so many other people. You said your first priority now is to get strength back. You said you can't do anything that will get you off-track, anything that could confuse the issue, put obstacles in the way of you regaining strength and putting some weight back on. You told me you have continued to lose weight. You now weigh 156 lbs. You had been able to maintain 158 for a few days but you have started losing weight again. You said you can't go on the trip. You need to stay at home, rest, eat when you can, sleep when you can, and do whatever it is your body needs. Now you have to change your goal. Your goal is now to get yourself in a position to go to Idaho for Christmas. That's what you really want to do. You wanted me to go up north for Thanksgiving anyway; there was no reason why your health should keep me from enjoying Thanksgiving with my family. But this year Thanksgiving wasn't going to be about the food and the family. This year Thanksgiving was going to be for you, a time when we all gathered together and were there for you. This year we had set aside our own personal wishes to be supportive of you and your battle with cancer. There is no way I am going away at Thanksgiving and leaving you here. Yes, we've done that in the past. We've even had Christmases apart. But this time we need to be together. This time we don't have an unknown number of Christmases or Thanksgivings ahead of us. It is likely that this will be our last Thanksgiving with you on this earth. The number feels so finite, and I am not willing to waste it.
I called my sister, the hostess, and she understood. Being a paramedic, she has a tremendous grasp of health issues, and tuned into yours immediately. She was most gracious about your realization that you can't go. She seemed to accept it more easily than I. My brother and other sister also understood, and all expressed having had a concern that this might happen. Laura, on the other hand, forgot that this wasn't about her. She forgot that your health had been the reason for making the plans in the first place. She cried, she raged, she called you on your cell phone, and haranged you about this sudden, unexpected change in plans. She talked to boyfriend, called again, talked some more, called back. This is where she is still nineteen and can't get out of her own needs. How could we do this to her after she had made so many changes in her plans? Were we also going to do this to her at Christmas? I said it might happen then too. Your health isn't what anyone wants it to be. It's out of our control.
We will stay here and take things slowly. You will stay in bed. We will have a little dinner with Dad and David. Laura and boyfriend will go to his grandmother's in the desert after they spend a couple of days with us. We'll adjust. Cancer will bring many more disappointments, I'm sure.
Shattered Plans
What a tough and disappointing day this was! At work I felt I was swimming against a riptide. You know how when you get in one, you remember there's a way to get out of it but it takes a while for the memory to clear itself so you can do it? Don't swim right to the shore, swim diagonally. That's the way it is with kids. Don't come right at them about their crappy behavior, maneuver your way around it by praising the ones doing the right thing, bring them into your activities by engaging them and ignoring the inappropriate behavior. Today that was difficult for me. The principal came into the room and asked me to start a paper trail on one of my little guys. He popped up on their radar yesterday when he was hitting and slapping on the playground and wouldn't cooperate with the yard duty aides. Then principal J went out to get him and he refused to come with him. Principal J and the Assistant Principal told me my little guy was going to have to be in the office at lunch for the rest of the week. Today Principal P was in at lunch. She told my little one to come in to her office and he refused. She came in and told me she wants me documenting his behavior. The first grade teacher who has his brother is having a similar experience. Mom hasn't returned the consent for help for our onsite counseling to work with him. I am sending another one home with my little guy. My new, homeless child, is demonstrating the same oppositional defiant behavior. And the twins were at the top of their game with whining and tattling today. Is it the holiday? I really hope so because I won't be here as consistently as I'd like to this year and, if they're a group that needs babysitting all the time, it's going to be hell when I'm gone.
You had the woman come by who will be taking Matt. You were with her for two and a half hours. When you were done, you were so tired you couldn't even eat. By the time I got home at 4:00, you had been in bed for almost five hours and you were still weak. I called the hotel in Sonoma to verify our reservations and to tell them we were going to have dogs in one of our rooms. Fifteen minutes later you called me into the room, turned off the tv, and said we needed to talk. You said you couldn't go up north for Thanksgiving. You were so totally exhausted by the two hours with L that there was no way you would be able to travel several hours by car, stay in a hotel room with me, and be at my sister's with so many other people. Your first priority now is to get strength back. You can't do anything that will get you off-track, anything that could confuse the issue, put obstacles in the way of you regaining strength and putting some weight back on. You have continued to lose weight. You now weigh 156 lbs. You had been able to maintain 158 for a few days but you have started losing weight again. You couldn't go on the trip. You need to stay at home, rest, eat when you can, sleep when you can, and do whatever it is your body needs. Now your goal would be to get yourself in a position to go to Idaho for Christmas. That's what you really want to do. You wanted me to go up anyway; there was no reason why your health should keep my from enjoying Thanksgiving with my family. But this year Thanksgiving wasn't going to be about the food and the family. This year Thanksgiving was going to be for you, a time when we all gathered together and were there for you. This year we had set aside our own personal wishes to be supportive of you and your battle with cancer. There is no way I am going away at Thanksgiving and leaving you here. Yes, we've done that in the past. We've even had Christmases apart. But this time, we need to be together. This time we don't have an unknown number of Christmases or Thanksgivings ahead of us. It is likely that this will be our last Thanksgiving with you on this earth. The number feels so finite, and I am not willing to waste it.
I called my sister, the hostess, and she understood. Being a paramedic, she has a tremendous grasp of health issues, and tuned into yours immediately. She was most gracious about your realization that you can't go. She seemed to accept it more easily than I. My brother and other sister also understood, and all expressed having had a concern that this might happen. Laura, on the other hand, forgot that this wasn't about her. She forgot that your health had been the reason for making the plans in the first place. She cried, she raged, she called you on your cell phone, and haranged you about this sudden, unexpected change in plans. She talked to boyfriend, called again, talked some more, called back. This is where she is still nineteen and can't get out of her own needs. How could we do this to her after she had made so many changes in her plans? Were we going to do this to her at Christmas too? I said it might happen then too. Your health isn't what anyone wants it to be. It's out of our control.
We will stay here and take things slowly. You will stay in bed. We will have a little dinner with Dad and David. Laura and boyfriend will go to his grandmother's in the desert after they spend a coupld of days with us. We'll adjust. Cancer will bring many more disappointments, I'm sure.
You had the woman come by who will be taking Matt. You were with her for two and a half hours. When you were done, you were so tired you couldn't even eat. By the time I got home at 4:00, you had been in bed for almost five hours and you were still weak. I called the hotel in Sonoma to verify our reservations and to tell them we were going to have dogs in one of our rooms. Fifteen minutes later you called me into the room, turned off the tv, and said we needed to talk. You said you couldn't go up north for Thanksgiving. You were so totally exhausted by the two hours with L that there was no way you would be able to travel several hours by car, stay in a hotel room with me, and be at my sister's with so many other people. Your first priority now is to get strength back. You can't do anything that will get you off-track, anything that could confuse the issue, put obstacles in the way of you regaining strength and putting some weight back on. You have continued to lose weight. You now weigh 156 lbs. You had been able to maintain 158 for a few days but you have started losing weight again. You couldn't go on the trip. You need to stay at home, rest, eat when you can, sleep when you can, and do whatever it is your body needs. Now your goal would be to get yourself in a position to go to Idaho for Christmas. That's what you really want to do. You wanted me to go up anyway; there was no reason why your health should keep my from enjoying Thanksgiving with my family. But this year Thanksgiving wasn't going to be about the food and the family. This year Thanksgiving was going to be for you, a time when we all gathered together and were there for you. This year we had set aside our own personal wishes to be supportive of you and your battle with cancer. There is no way I am going away at Thanksgiving and leaving you here. Yes, we've done that in the past. We've even had Christmases apart. But this time, we need to be together. This time we don't have an unknown number of Christmases or Thanksgivings ahead of us. It is likely that this will be our last Thanksgiving with you on this earth. The number feels so finite, and I am not willing to waste it.
I called my sister, the hostess, and she understood. Being a paramedic, she has a tremendous grasp of health issues, and tuned into yours immediately. She was most gracious about your realization that you can't go. She seemed to accept it more easily than I. My brother and other sister also understood, and all expressed having had a concern that this might happen. Laura, on the other hand, forgot that this wasn't about her. She forgot that your health had been the reason for making the plans in the first place. She cried, she raged, she called you on your cell phone, and haranged you about this sudden, unexpected change in plans. She talked to boyfriend, called again, talked some more, called back. This is where she is still nineteen and can't get out of her own needs. How could we do this to her after she had made so many changes in her plans? Were we going to do this to her at Christmas too? I said it might happen then too. Your health isn't what anyone wants it to be. It's out of our control.
We will stay here and take things slowly. You will stay in bed. We will have a little dinner with Dad and David. Laura and boyfriend will go to his grandmother's in the desert after they spend a coupld of days with us. We'll adjust. Cancer will bring many more disappointments, I'm sure.
Monday, November 23, 2009
Monday the 23rd
Welcome home. Sweetie! Yesterday you blew out the hard drive in the computer. I haven't heard so much cussing in a very long time. I feel disoriented with only the laptop, and I'm not able to print out copies of photos or upload anything on Facebook. I also had a heck of a time logging onto this blog. I went around and around with the user id and passwords, interpreting their Salvador Dali letters to prove that I wasn't some robot trying to crash Blogger.
Today was Friendship Feast day in my classroom. I had five parents helping, and I can't remember a feast going more smoothly. We made pumpkin pudding, cornbread, butter and vegetable (Friendship) soup, slightly less than we usually make but it all came together quickly. My new aide really knows how to get to work with the kids. She's fast and she's accurate. Each child brought an ingredient to put in the soup. With at least twenty ingredients, we get a pretty tasty concoction. It was a tiring day but I am okay.
Since you decided we will take the Lexus up north, you went and got new windshield wipers and put them on. You were going to have them top off the oil and check the air pressure in the tires, etc., but I think you ran out of gas. Again, you were in bed when I got home. You said each day is better than the one before, and I will take your word for it. If that's true, then each day you will improve, it will be less frustrating, and I can feel like you're getting somewhere.
Today was Friendship Feast day in my classroom. I had five parents helping, and I can't remember a feast going more smoothly. We made pumpkin pudding, cornbread, butter and vegetable (Friendship) soup, slightly less than we usually make but it all came together quickly. My new aide really knows how to get to work with the kids. She's fast and she's accurate. Each child brought an ingredient to put in the soup. With at least twenty ingredients, we get a pretty tasty concoction. It was a tiring day but I am okay.
Since you decided we will take the Lexus up north, you went and got new windshield wipers and put them on. You were going to have them top off the oil and check the air pressure in the tires, etc., but I think you ran out of gas. Again, you were in bed when I got home. You said each day is better than the one before, and I will take your word for it. If that's true, then each day you will improve, it will be less frustrating, and I can feel like you're getting somewhere.
Sunday Sunday
It isn't often I skip church when I'm in town. Dad and I were still not back up-to-speed from our ailments. I was tired, I felt I had too many things to do, and the pastor was out-of-town. I slept in, my guilty pleasure this weekend. Again, I woke at about 8:00 a.m. I needed to color my hair. I never want to be one of those women who walks around oblivious to the half inch of roots she sports. It's good to take care of coloring first thing in the morning. By 10:00 I was ready to go. This time we were going to make it to Costco to get king crab legs.
Well, we made it to Costco, and they were having their weekend Seafood Festival. The seafood, however, was meager. There were no kiosks of frozen ice laden with giant legs, ceviche and other seafood delicacies. There were just some packages of ahi and tilapia. It was very disappointing. You were not going to get to have your king crab 'fix'. We each found a pair of pants that fit our new bodies. We made a couple of returns, totaling $66 and managed to spend only $67. That means we got out of there for $1. You were exhausted.
I dropped you at the house and embarked on my journey to return the wireless connection and get myself a new cell phone. I went to two stores where I was told they couldn't help me. The last one, a company store, told me I had to go back to the Santa Monica store in order to be able to complete my return. So I made the trek. After driving around the block a couple of times, I was able to get a parking space. Thankfully, it was Sunday and I didn't have to worry about the meter. The Blackberry deal was not going to be in my best interests. I could get two for a total of $40 but my monthly costs would go up by $30. Instead, I got an aptly-named Reclaim, a 40% recycled phone, with internet and email and all the other doo-dads I wanted. It's cute, it's 'green', and it fits in the cell phone holder in my purse. Now I have another owner's manual to read. How I dislike those things!
It was a long time before I got back home. You were in bed. You have spent so much of the last two months in bed. This trip up north is going to take a lot out of you. We will all have to be patient. And you will need to be kind.
My day was energized by phone calls from friends and a dinner at C&O with Suzin, just the two of us. She convinced me to have chianti with her; Larry had sent her with money to pay for our wine, and it was nice to have something I so rarely drink. She said I should be drinking a glass of red wine every evening. I will entertain that idea but don't think I'll do it. I've got to be careful with alcohol. Sometimes Suzin can be so observant. She said something at dinner that struck me so strongly, I wrote it on the butcher paper they had covering the red-and-white checkered tablecloth. "You've got an infirmed father who's losing his mind. You've got an infirmed husband who's losing his life.....possibly. And they hate each other. They're running down the field toward you. And you're the goalie." It's kind of an incomplete metaphor, we couldn't really figure out what's wrong with it. But we had fun talking about it.
At another time, Suzin took the salt shaker, removed the lid and said, "This is how big Bill's tumor is." What? It's the size of a salt shaker lid? Can it be something that small can make you so miserable, can turn our lives upside down. can prevent you from eating? Something that small is going to cause your death?
You decided we are going to drive up north in the Lexus. I love that little car. It sits up off the road, I can see around the cars in front of it, and it's comfortable and roomy. I will be glad to take it. I haven't driven up in it for years. The only problem is that it doesn't have a gps. We better not do any tricky driving on this trip.
Again, we hooked up the J tube to nourish you before I went to bed, and again you unhooked yourself shortly afterward. It either fills you up or causes abdominal pain. Virtually everything you try causes your stomach to cramp up. You start each day feeling great and end each day with stomach pain. Is this because you are recovering from abdominal surgery or is it the cancer?
Well, we made it to Costco, and they were having their weekend Seafood Festival. The seafood, however, was meager. There were no kiosks of frozen ice laden with giant legs, ceviche and other seafood delicacies. There were just some packages of ahi and tilapia. It was very disappointing. You were not going to get to have your king crab 'fix'. We each found a pair of pants that fit our new bodies. We made a couple of returns, totaling $66 and managed to spend only $67. That means we got out of there for $1. You were exhausted.
I dropped you at the house and embarked on my journey to return the wireless connection and get myself a new cell phone. I went to two stores where I was told they couldn't help me. The last one, a company store, told me I had to go back to the Santa Monica store in order to be able to complete my return. So I made the trek. After driving around the block a couple of times, I was able to get a parking space. Thankfully, it was Sunday and I didn't have to worry about the meter. The Blackberry deal was not going to be in my best interests. I could get two for a total of $40 but my monthly costs would go up by $30. Instead, I got an aptly-named Reclaim, a 40% recycled phone, with internet and email and all the other doo-dads I wanted. It's cute, it's 'green', and it fits in the cell phone holder in my purse. Now I have another owner's manual to read. How I dislike those things!
It was a long time before I got back home. You were in bed. You have spent so much of the last two months in bed. This trip up north is going to take a lot out of you. We will all have to be patient. And you will need to be kind.
My day was energized by phone calls from friends and a dinner at C&O with Suzin, just the two of us. She convinced me to have chianti with her; Larry had sent her with money to pay for our wine, and it was nice to have something I so rarely drink. She said I should be drinking a glass of red wine every evening. I will entertain that idea but don't think I'll do it. I've got to be careful with alcohol. Sometimes Suzin can be so observant. She said something at dinner that struck me so strongly, I wrote it on the butcher paper they had covering the red-and-white checkered tablecloth. "You've got an infirmed father who's losing his mind. You've got an infirmed husband who's losing his life.....possibly. And they hate each other. They're running down the field toward you. And you're the goalie." It's kind of an incomplete metaphor, we couldn't really figure out what's wrong with it. But we had fun talking about it.
At another time, Suzin took the salt shaker, removed the lid and said, "This is how big Bill's tumor is." What? It's the size of a salt shaker lid? Can it be something that small can make you so miserable, can turn our lives upside down. can prevent you from eating? Something that small is going to cause your death?
You decided we are going to drive up north in the Lexus. I love that little car. It sits up off the road, I can see around the cars in front of it, and it's comfortable and roomy. I will be glad to take it. I haven't driven up in it for years. The only problem is that it doesn't have a gps. We better not do any tricky driving on this trip.
Again, we hooked up the J tube to nourish you before I went to bed, and again you unhooked yourself shortly afterward. It either fills you up or causes abdominal pain. Virtually everything you try causes your stomach to cramp up. You start each day feeling great and end each day with stomach pain. Is this because you are recovering from abdominal surgery or is it the cancer?
Saturday, November 21, 2009
Saturday the 21st
I love the pleasure of sleeping in whenever I can. It harkens back to my teenage years when I routinely slept 10 - 11 hours a night. The once-in-a-while when I can do it feels like a victory. Today I woke up after 8:30, almost in disbelief, my whole being happy and satisfied.
You were up very early, which is your habit, but once you tired out at 10:30 a.m., you never got your energy back. We had hoped to go to Costco after I finished laminating placemats at the teachers' store. We never made it. I drained the hot tub and tried to return the internet card from the cell phone company. I looked at possible new phones and will probably go with the Blackberry curve because the company is having a great deal on them, buy one and after rebates you'll have two for a grand total of $49.99, not because it best suits my needs but because of the good deal. I'm sure it will more than adequately suit my purposes.
You had a little solid food today, and yesterday the visiting nurse showed you how to use Pepsi to both clean out your J tube and give you a couple of calories. I bought more Ensure for you at the store. Geez, that stuff is expensive! I wish you would start using up all those cans of nourishment the hospital sent over. We have almost a hundred of them.
This evening I realized I had drained the hot tub but little pools of water were still in the seats and on the bottom. So I got a big Shamwow and started cleaning them up. I wanted to disconnect the hose I had put from the tub into the yard because I was worried the dogs would chew it up. You saw me sopping up the liquid and told me to stop. The problem was that you didn't do it nicely. Not at all. You even cursed at me....something about how I wasn't taking good care of myself. That was completely unnecessary. What is this? One false move and I get cussed out? It came out of nowhere, and I truly don't deserve it. I wonder what is going on in your head when you skip 'nice' and go straight to 'very mean'. Are you happy now? I'm not.
You were up very early, which is your habit, but once you tired out at 10:30 a.m., you never got your energy back. We had hoped to go to Costco after I finished laminating placemats at the teachers' store. We never made it. I drained the hot tub and tried to return the internet card from the cell phone company. I looked at possible new phones and will probably go with the Blackberry curve because the company is having a great deal on them, buy one and after rebates you'll have two for a grand total of $49.99, not because it best suits my needs but because of the good deal. I'm sure it will more than adequately suit my purposes.
You had a little solid food today, and yesterday the visiting nurse showed you how to use Pepsi to both clean out your J tube and give you a couple of calories. I bought more Ensure for you at the store. Geez, that stuff is expensive! I wish you would start using up all those cans of nourishment the hospital sent over. We have almost a hundred of them.
This evening I realized I had drained the hot tub but little pools of water were still in the seats and on the bottom. So I got a big Shamwow and started cleaning them up. I wanted to disconnect the hose I had put from the tub into the yard because I was worried the dogs would chew it up. You saw me sopping up the liquid and told me to stop. The problem was that you didn't do it nicely. Not at all. You even cursed at me....something about how I wasn't taking good care of myself. That was completely unnecessary. What is this? One false move and I get cussed out? It came out of nowhere, and I truly don't deserve it. I wonder what is going on in your head when you skip 'nice' and go straight to 'very mean'. Are you happy now? I'm not.
Friday, November 20, 2009
Finally Friday
I am so glad I have had minimum days at work this week. The conferences are a joy, and I have felt I have real maturity and relaxed confidence as I have run them. I think my mood has relaxed the parents as well. Work is a blessing. Now I think I have struck a balance between my commitment to work and my desire to be at home. I don't think I can do one or the other right now. Work can be such a much-needed departure for me. The intensity my class demands precludes me dwelling on anything else. It breathes new life into me. You need me to have it, too.
My union rep investigated the possibility of me taking a leave. I can do it, and the district will continue my health coverage but the leave would be without pay. As the only wage-earner, this is not a practicality until your health dictates it. I believe there will come a point in time when I will have to take this kind of leave somewhere between now and June. Just to be sure I'm available for you in July and August, I will not take a summer school position.
I have missed three Leadership Team meetings at work now. As one was approaching on Monday, Principal J came to the K teachers complaining that I was going to be absent for yet another one. (I didn't know about it anyway, or I would have notified someone.) The way they described his attitude put me in some discomfort. My early years with this man were not the most positive in nature, and I didn't want to go back to him seeing me as 'unreliable' or something of that sort. I decided to share your condition with the other interim principal. It was a calculated risk but turned out to be the right choice. She then shared with me that she had had breast cancer four years ago, so she knows the drill. She got me out of any non-essential obligations I have, including the Leadership Team. The discussion greatly relieved me. Today Clara came up and said she had found out about you. She said something loving and my eyes welled up. Again, I was caught off-guard. Part of that was because I just miss Clara so much, and having her both back at work and then say something caring to me, got me emotional.
Your friend brought over hot pastrami sandwiches this afternoon. I don't know how that came about, but you could eat about two bites, minus the rye. I was pleased he came by because he has trouble with illness tending to greet it with a heavy helping of denial. This was a kind gesture on his part signaling that your illness, perhaps, will jolt him into reality.
We are readjusting to having you at home. I am sleeping in the middle bedroom because you are up and down so much during the night, and your machine is noisy when you have to connect yourself for some nourishment. We did, however, watch some tv in bed together.
My union rep investigated the possibility of me taking a leave. I can do it, and the district will continue my health coverage but the leave would be without pay. As the only wage-earner, this is not a practicality until your health dictates it. I believe there will come a point in time when I will have to take this kind of leave somewhere between now and June. Just to be sure I'm available for you in July and August, I will not take a summer school position.
I have missed three Leadership Team meetings at work now. As one was approaching on Monday, Principal J came to the K teachers complaining that I was going to be absent for yet another one. (I didn't know about it anyway, or I would have notified someone.) The way they described his attitude put me in some discomfort. My early years with this man were not the most positive in nature, and I didn't want to go back to him seeing me as 'unreliable' or something of that sort. I decided to share your condition with the other interim principal. It was a calculated risk but turned out to be the right choice. She then shared with me that she had had breast cancer four years ago, so she knows the drill. She got me out of any non-essential obligations I have, including the Leadership Team. The discussion greatly relieved me. Today Clara came up and said she had found out about you. She said something loving and my eyes welled up. Again, I was caught off-guard. Part of that was because I just miss Clara so much, and having her both back at work and then say something caring to me, got me emotional.
Your friend brought over hot pastrami sandwiches this afternoon. I don't know how that came about, but you could eat about two bites, minus the rye. I was pleased he came by because he has trouble with illness tending to greet it with a heavy helping of denial. This was a kind gesture on his part signaling that your illness, perhaps, will jolt him into reality.
We are readjusting to having you at home. I am sleeping in the middle bedroom because you are up and down so much during the night, and your machine is noisy when you have to connect yourself for some nourishment. We did, however, watch some tv in bed together.
Thursday, November 19, 2009
One Day at Home
Today was your first full day out of the hospital. I can only imagine how nice it felt, how colorful and lively our overly-cluttered home must seem. I know you, and you wanted to get back to a normal routine. You wanted to return a cooler to Big 5, see the dietitian, do some things and try some solid food. And true to your nature, you overdid it. The words 'slow', 'gradual', and 'wait' have always come to you with great difficulty. By the time you were leaving the dietitian at 1:45, you were exhausted. Your last four weeks have been spent in bed, three in the hospital and one before that at home. Your life has been a long series of mini-naps punctuated by the occasional short walk or visitor. Today you tried it all: cooking, eating, going out, driving, unpacking. You couldn't handle it all. I think you will sleep well tonight as soon as you get rid of that chicken thigh you tried this evening.
I went to work. The children were very glad to see me, and it was clear that there had been chaos while I was gone. I am a little worried that this is one of those groups that really falls apart when the teacher is gone. They are high-maintenance and need constant 'wrangling'; a group like this happens every once in a while. This year just happens to be not a good one of those 'whiles'. I will be out a lot this year, and they will need to start rising to the occasion, yet they are only five, and some of them are so needy that they aren't able to play that game. The onsite counseling center is starting to come in once a week to work with small groups about conflict resolution, sharing, and working as a community. We had a minimum day and spent a fair amount of time getting some 'un-holiday' preparations completed for next week. I continued with conferences both before and after school. I am tired now. I came home and slept for two hours after taking some of the codeinated cough syrup. Tomorrow I have a very tough conference in the morning and hope it doesn't run into class time.
This is Pancreatic Cancer Awareness Month. It's a scary, scary disease that is not usually discovered until it is very far advanced, it has the highest fatality rate of all the cancers, and there is no screening test for it yet. It receives a paltry 2% of all federal monies spent on cancer research. You watched a show on Patrick Swayze and how he spent the last couple of years of his life. His wife and brother are starting to advocate for the need for more research on pancreatic cancer. He was in a lot of pain. That frightens you; it frightens me too.
I went to work. The children were very glad to see me, and it was clear that there had been chaos while I was gone. I am a little worried that this is one of those groups that really falls apart when the teacher is gone. They are high-maintenance and need constant 'wrangling'; a group like this happens every once in a while. This year just happens to be not a good one of those 'whiles'. I will be out a lot this year, and they will need to start rising to the occasion, yet they are only five, and some of them are so needy that they aren't able to play that game. The onsite counseling center is starting to come in once a week to work with small groups about conflict resolution, sharing, and working as a community. We had a minimum day and spent a fair amount of time getting some 'un-holiday' preparations completed for next week. I continued with conferences both before and after school. I am tired now. I came home and slept for two hours after taking some of the codeinated cough syrup. Tomorrow I have a very tough conference in the morning and hope it doesn't run into class time.
This is Pancreatic Cancer Awareness Month. It's a scary, scary disease that is not usually discovered until it is very far advanced, it has the highest fatality rate of all the cancers, and there is no screening test for it yet. It receives a paltry 2% of all federal monies spent on cancer research. You watched a show on Patrick Swayze and how he spent the last couple of years of his life. His wife and brother are starting to advocate for the need for more research on pancreatic cancer. He was in a lot of pain. That frightens you; it frightens me too.
Wednesday, November 18, 2009
Inhome Care
Today I went back to work. I started out feeling excellent. I left feeling okay. I enjoyed the conferences and like the change of pace the day offers. For the past thirty five years I have wished it weren't limited to just one day but it's a precious day for which the district loses valuable ADA money. Chances of us ever adding another day are non-existent. Caro and Lael invited me to lunch. Teachers don't get to do that; our lunchtimes are short to begin with but usually get chewed down by children who drop their lunch trays or who aren't 'ready' to go when the rest of the group is. We had a whole hour today.
My last conference ended at four-thirty. I was in therapy when you texted me and said you were ready. How strange that message seemed. I picked you up at the hospital at 6:20. You have a pole and a 'Kangaroo', a machine that metes out hourly doses of nourishment for you. Your suitcase was full of cans of nourishment and weighed a ton. You need to have it operating 18 hours a day and can start trying to eat liquids and a little solid food. I was tense. Bringing you home is both great and stressful. It's great because you are back, and I hope you'll be back for a long time. I get to enjoy your company and talk to you, and I won't have to drive to the hospital and sit with you in that bare and sterile room. It's stressful because now I can't do whatever I want and go to bed when I'm good and ready. I can't watch tv and fall asleep with it on. And then there's Dad. He has a cold and I will be on pins and needles worrying about the nature of any interactions you might have with him.-----or if you are going to be insulted by him and want him to move out. I want you to stop sweating the small stuff and to start seeing him for who his is now: an old man who is very different than you and who is starting to lose his marbles.
My last conference ended at four-thirty. I was in therapy when you texted me and said you were ready. How strange that message seemed. I picked you up at the hospital at 6:20. You have a pole and a 'Kangaroo', a machine that metes out hourly doses of nourishment for you. Your suitcase was full of cans of nourishment and weighed a ton. You need to have it operating 18 hours a day and can start trying to eat liquids and a little solid food. I was tense. Bringing you home is both great and stressful. It's great because you are back, and I hope you'll be back for a long time. I get to enjoy your company and talk to you, and I won't have to drive to the hospital and sit with you in that bare and sterile room. It's stressful because now I can't do whatever I want and go to bed when I'm good and ready. I can't watch tv and fall asleep with it on. And then there's Dad. He has a cold and I will be on pins and needles worrying about the nature of any interactions you might have with him.-----or if you are going to be insulted by him and want him to move out. I want you to stop sweating the small stuff and to start seeing him for who his is now: an old man who is very different than you and who is starting to lose his marbles.
Tuesday, November 17, 2009
Very D Day
Today I awoke fully aware that I had passed the major portion of my flu. I wondered how you were feeling and if your future would hold days of feeling 'weller'. As I had promised Dad, I went to the doctor, actually a nurse practitioner. That meant bathing, an absolute necessity, since I hadn't done that since Saturday, which far-exceeded my two-day bathing limit. As soon as I sat down in the waiting room and started to read my book, I had a terrible coughing jag and had to go into the hall. I don't know if it was because they heard me or because it was my turn, but the nurse came to the hall to fetch me and ushered me into an exam room. As expected, she heard nothing in my chest and my lymph glands were now fine. She gave me some codeinated cough syrup but it doesn't work quite as well as my NyQuil, at least not for helping me get sleep. However, she did say it would help me get constipated. Oh, boy!
I called you after I returned. You sounded 'up' and were very concerned about my health. You wanted to know if I was still contagious but the NP had said I no longer was. I was feeling much better and was improving by the minute. Your endoscopy had gone well, at least as far as you knew, and you were hoping to get clearance to come home tomorrow. Finally! You will be using a J tube and will bring a fancy machine to monitor it and nourish you. You expected that the doctor would have to spend quite some time with you explaining and checking out the machine. They will send you home with cans of the 'nourishment' and you will get to start trying clear chicken broth.
Then you paused. You had more news. You hadn't told me yesterday because I had been so ill and feverish. The lab results had come in and they are positive for pancreatic cancer. Not a rare form. Just common pancreatic cancer. The oncologist had already come in and introduced herself to you. She knew of the big mucky muck and seemed to have some very good ideas for your treatment. You felt very good about her and her currency with pancreatic cancer chemo treatments. That made me feel confident in her too. I am beyond stunned at this point and will continue to do whatever is necessary to make your time as pleasant as possible. We can now make a plan. Sort of.
I called you after I returned. You sounded 'up' and were very concerned about my health. You wanted to know if I was still contagious but the NP had said I no longer was. I was feeling much better and was improving by the minute. Your endoscopy had gone well, at least as far as you knew, and you were hoping to get clearance to come home tomorrow. Finally! You will be using a J tube and will bring a fancy machine to monitor it and nourish you. You expected that the doctor would have to spend quite some time with you explaining and checking out the machine. They will send you home with cans of the 'nourishment' and you will get to start trying clear chicken broth.
Then you paused. You had more news. You hadn't told me yesterday because I had been so ill and feverish. The lab results had come in and they are positive for pancreatic cancer. Not a rare form. Just common pancreatic cancer. The oncologist had already come in and introduced herself to you. She knew of the big mucky muck and seemed to have some very good ideas for your treatment. You felt very good about her and her currency with pancreatic cancer chemo treatments. That made me feel confident in her too. I am beyond stunned at this point and will continue to do whatever is necessary to make your time as pleasant as possible. We can now make a plan. Sort of.
Two Days Gone
Saturday you told me to go home because I was coughing. I thought I just had a tickle in my throat. I had just gotten rid of a chronic sore throat so I couldn't be getting sick again. Could I?
I went home and got into bed----and haven't been out of it since. Yes, I am sick again. No surprise to me. I know my body is responding to this entire situation with low resistance to germs.
You have been stable in the hospital. You only threw up once, and that was when the nurse flushed your tube with 500ml of water instead of 100. I don't know if that is truly the reason why you had an episode of 'emesis', but you do. It's always tough to dissuade you from your line of thinking. Today you will get an endoscopy, or some sort of scoping, to see if your insides have a clear pathway. Your biopsy tissues have been sent to a larger facility and the results should be in any moment now.
I haven't been able to go to the hospital, I haven't been able to go to work, I couldn't go to church on Sunday, I had to call the relief caregiver to come early to help Dad. I have had a fever, a cough, a runny nose, headaches and the chills. Dad insisted on playing doctor yesterday. He listened to my chest and said he couldn't hear anything with the stethoscope he was using. Something's wrong with the scope. Hmmmmm. He said I have swollen glands and I should see a doctor for an antibiotic. Hmmmmmm. I made an appointment and will go in this morning. My fever is gone now, and I think they will tell me I have had a viral flu and that there is nothing they can do for me. I get that part. Then I will tell them that my husband is in the hospital and I can't visit him until I am well. I wonder what they'll do?
I went home and got into bed----and haven't been out of it since. Yes, I am sick again. No surprise to me. I know my body is responding to this entire situation with low resistance to germs.
You have been stable in the hospital. You only threw up once, and that was when the nurse flushed your tube with 500ml of water instead of 100. I don't know if that is truly the reason why you had an episode of 'emesis', but you do. It's always tough to dissuade you from your line of thinking. Today you will get an endoscopy, or some sort of scoping, to see if your insides have a clear pathway. Your biopsy tissues have been sent to a larger facility and the results should be in any moment now.
I haven't been able to go to the hospital, I haven't been able to go to work, I couldn't go to church on Sunday, I had to call the relief caregiver to come early to help Dad. I have had a fever, a cough, a runny nose, headaches and the chills. Dad insisted on playing doctor yesterday. He listened to my chest and said he couldn't hear anything with the stethoscope he was using. Something's wrong with the scope. Hmmmmm. He said I have swollen glands and I should see a doctor for an antibiotic. Hmmmmmm. I made an appointment and will go in this morning. My fever is gone now, and I think they will tell me I have had a viral flu and that there is nothing they can do for me. I get that part. Then I will tell them that my husband is in the hospital and I can't visit him until I am well. I wonder what they'll do?
Saturday, November 14, 2009
Saturday the 14th
I woke up to an absolutely gorgeous fall day. As much as I love summer and warm weather, I welcomed the clean clear morning, and took Stevie for a half-hour walk. I picked up around the house and went to the hospital at about 1:00. I almost immediately started coughing. Am I getting another stress cold? I was tired and laid in your bed while you gave yourself a sponge bath. You, too, are tired, and the doctor is letting you eat ice chips again. You had me buy Sprites at the market, take them home, pour them out and whip out the carbonation with the Bamix. It took a long time. I poured about 1/2 ounce over the ice chips. You told me I sounded awful and that I should go home. I didn't argue. I left. When we spoke this evening, you were tired but your day has been uneventful, and I guess that's a good thing. Neither one of us has any energy. No one should be surprised by that.
Am I having a psychosomatic response to the way this thing is dragging on? Or is it something else? Is everything stressing me out? I no sooner get rid of some malady and another one attacks me. Two of my students are out with head lice and one with pink eye. Will I get that too? Next week is a heavy week with parent/teacher conferences. I must somehow fortify myself.
Am I having a psychosomatic response to the way this thing is dragging on? Or is it something else? Is everything stressing me out? I no sooner get rid of some malady and another one attacks me. Two of my students are out with head lice and one with pink eye. Will I get that too? Next week is a heavy week with parent/teacher conferences. I must somehow fortify myself.
Friday, November 13, 2009
Friday the 13th
What if you don't have cancer? Will I need to rename this blog like my sister says? How about 'Not Saying Goodbye to You'? Or 'The Husband with Nine Lives'? (That's lives, not wives.)
You haven't thrown up in over 24 hours, and they did not reinsert the NG tube last night. You changed your mind again at the very last second, apparently. Nevertheless, they are keeping you through the weekend and being cautious. Last night, when we met with the surgeon, he said he had tried it your way against his better wishes. Oh, ho!!! There you go again! Now he was suggesting you do it his way. He didn't want to put you on liquids or solids when he did. Now you know why. Maybe that's why you're being such a good boy now. You were completely unhooked when my sister and I came in to see you, and you had put on your jeans and a sweatshirt. You looked like you were ready to go home. But by the time I walked my sister to the car, you were really tired, and when I came back you were asleep. You will come home with the J tube, and you will be hooked up to it 18 hours a day. You won't be able to use your beloved hot tub or go in the water if we go to Hawaii.
How ill are you? Are you just recovering from surgery or are you getting more and more ill? What will the new biopsies tell us? Are you living or dying? I know you really want to go to Hawaii. As my sister reminded us, it's on your Bucket List. That's part of what we've been doing, making a Bucket List. A Bucket List is a good thing, even if you don't have malignant cancer. We should still move forward with it; you never know what will happen tomorrow.
You haven't thrown up in over 24 hours, and they did not reinsert the NG tube last night. You changed your mind again at the very last second, apparently. Nevertheless, they are keeping you through the weekend and being cautious. Last night, when we met with the surgeon, he said he had tried it your way against his better wishes. Oh, ho!!! There you go again! Now he was suggesting you do it his way. He didn't want to put you on liquids or solids when he did. Now you know why. Maybe that's why you're being such a good boy now. You were completely unhooked when my sister and I came in to see you, and you had put on your jeans and a sweatshirt. You looked like you were ready to go home. But by the time I walked my sister to the car, you were really tired, and when I came back you were asleep. You will come home with the J tube, and you will be hooked up to it 18 hours a day. You won't be able to use your beloved hot tub or go in the water if we go to Hawaii.
How ill are you? Are you just recovering from surgery or are you getting more and more ill? What will the new biopsies tell us? Are you living or dying? I know you really want to go to Hawaii. As my sister reminded us, it's on your Bucket List. That's part of what we've been doing, making a Bucket List. A Bucket List is a good thing, even if you don't have malignant cancer. We should still move forward with it; you never know what will happen tomorrow.
Thursday, November 12, 2009
Another Step Backwards
Today I am tired! I went to the hospital at 6:30a.m. to be there when the doctor made his morning rounds. I could only stay until 7:30 but the doctor didn't get in until almost 10:00. It was frustrating. The early hour did me in for the whole day. You had made it through the night without vomiting and had urinated a few times. JC came back on as the day nurse and the night nurse had been one of your favorites. I left you all my questions at 7:30. You dutifully asked the doctor and wrote down his answers for me.
Work was a challenge. I was hard-pressed to stay on top of things, and one of my students made my job very difficult today. Then one of the twins went to the nurse because her head was itching, and you know what that means. Oh, another round of head lice. Thankfully, I have never gotten it but this would be one time I wouldn't know how to handle it if I did.
After work I went to the hospital after going home, paying the cleaning lady (bless her heart) and resting for 20 minutes. You had vomited 900ml after only taking in 90ml. This was not good news. It meant that your stomach was not emptying itself at all. You are suddenly becoming very good at following doctor's orders. You won't even take a sip of water unless it's to swallow your pills, and you only swish your mouth with water when you are parched. You are learning the hard way.
We did talk to the doctor about 6:00p.m. He is frustrated too. They will have to reinsert the NG tube, you might have to go home with the J tube, but hopefully not with the NG. I am sad for you because you have to have that darn thing stuck back down your nose again. It's debilitating and very uncomfortable. You might be eating Thanksgiving dinner through your J tube. (Do they make turkey-flavored Vivonex?) The doctor says there are patients whose bypasses open up within a few days and others whose bypasses don't open up for months. Which kind will you be? He said they have sent your tissues to an outside lab to biopsy because their pathologist couldn't figure them out. They are rare, that's for sure, just like you.
I don't know when you'll be home. I think the hospital is the best place for you right now, but I am getting a little tired of driving there every day. Not much gets done around the house but that's the way it will be for the foreseeable future.
Work was a challenge. I was hard-pressed to stay on top of things, and one of my students made my job very difficult today. Then one of the twins went to the nurse because her head was itching, and you know what that means. Oh, another round of head lice. Thankfully, I have never gotten it but this would be one time I wouldn't know how to handle it if I did.
After work I went to the hospital after going home, paying the cleaning lady (bless her heart) and resting for 20 minutes. You had vomited 900ml after only taking in 90ml. This was not good news. It meant that your stomach was not emptying itself at all. You are suddenly becoming very good at following doctor's orders. You won't even take a sip of water unless it's to swallow your pills, and you only swish your mouth with water when you are parched. You are learning the hard way.
We did talk to the doctor about 6:00p.m. He is frustrated too. They will have to reinsert the NG tube, you might have to go home with the J tube, but hopefully not with the NG. I am sad for you because you have to have that darn thing stuck back down your nose again. It's debilitating and very uncomfortable. You might be eating Thanksgiving dinner through your J tube. (Do they make turkey-flavored Vivonex?) The doctor says there are patients whose bypasses open up within a few days and others whose bypasses don't open up for months. Which kind will you be? He said they have sent your tissues to an outside lab to biopsy because their pathologist couldn't figure them out. They are rare, that's for sure, just like you.
I don't know when you'll be home. I think the hospital is the best place for you right now, but I am getting a little tired of driving there every day. Not much gets done around the house but that's the way it will be for the foreseeable future.
Wednesday, November 11, 2009
Veterans' Day
Last night you had just eaten your first bites of solid food before I left. Immediately after eating, you started feeling poorly. You became pale and your hands felt a little clammy. You said you needed some rest so I left rather early.
This morning I was finally well enough to ride. Oh, how I have missed that! It's not the same without you. The tires are probably too low and it's more difficult to do all the work by myself, but the exercise, to feel the stress getting pushed out of my body, was so wonderful, so healing! I had started to feel like I was reaching a point where something was going to cause me to crumble, some little glitchy thing would happen and I would fall apart because I wouldn't be able to control it. Getting back on the bicycle, riding, pushing, going, make me remember how I can stay on top of it all if I can keep it up.
During the night you vomited 2500ml. When I came in today you looked like you did when I first brought you in two weeks ago. I know you have more energy and hydration but the gaunt look, the sallow face, and the listlessness seemed to be back. It was upsetting on that level. However, we had one shred of good news. So far, the biopsies are coming up negative for cancer! But what can it be? They will do more tests on the samples, but now we have even more questions than we did before. If it's not cancer, what do they think it is? How many more tests will they do? When will we know the results? What other procedures can they do to find out? What about a PET scan? What does this vomiting mean? Why is the vomit green and why does it smell like fish?
JC was so kind today, not because I brought THE Butter Almond Cake, but because that's how she is. I got a little teary and she hugged me and then took me walking down the hallway. I told her we are so happy with the care you've been getting and how much better it is than the care Dad got at the fancy hospital last year. But today felt like we took three steps forward and two steps back. We are so glad the biopsies are negative so far but are worried the bypass isn't working.
I waited in the evening for the doctor to come in but he never came. I will go back to the hospital at 6:30 in the morning to see if I can be there when he does his morning rounds. I have questions. Both Pam, Kathie and JC told me to write down all my questions, even the ones I think are stupid, to ask him in the hope that something will spark a memory or create an idea in his mind. Be respectful. Don't be too challenging on one hand but on the other hand we have to be advocates, and I might be the best one, since you can be in denial of your pain at times. (On a scale of 0 to 5, 5 being the most painful, how do you feel? Sometimes you say 0 and I say, "You were just vomiting in the waiting room. What do you mean zero?") Even Dad said it's time to be a little pushy, and he's from the Doctor As Diety school-of-thought.
So I will be there bright and early tomorrow with my little list of questions.
This morning I was finally well enough to ride. Oh, how I have missed that! It's not the same without you. The tires are probably too low and it's more difficult to do all the work by myself, but the exercise, to feel the stress getting pushed out of my body, was so wonderful, so healing! I had started to feel like I was reaching a point where something was going to cause me to crumble, some little glitchy thing would happen and I would fall apart because I wouldn't be able to control it. Getting back on the bicycle, riding, pushing, going, make me remember how I can stay on top of it all if I can keep it up.
During the night you vomited 2500ml. When I came in today you looked like you did when I first brought you in two weeks ago. I know you have more energy and hydration but the gaunt look, the sallow face, and the listlessness seemed to be back. It was upsetting on that level. However, we had one shred of good news. So far, the biopsies are coming up negative for cancer! But what can it be? They will do more tests on the samples, but now we have even more questions than we did before. If it's not cancer, what do they think it is? How many more tests will they do? When will we know the results? What other procedures can they do to find out? What about a PET scan? What does this vomiting mean? Why is the vomit green and why does it smell like fish?
JC was so kind today, not because I brought THE Butter Almond Cake, but because that's how she is. I got a little teary and she hugged me and then took me walking down the hallway. I told her we are so happy with the care you've been getting and how much better it is than the care Dad got at the fancy hospital last year. But today felt like we took three steps forward and two steps back. We are so glad the biopsies are negative so far but are worried the bypass isn't working.
I waited in the evening for the doctor to come in but he never came. I will go back to the hospital at 6:30 in the morning to see if I can be there when he does his morning rounds. I have questions. Both Pam, Kathie and JC told me to write down all my questions, even the ones I think are stupid, to ask him in the hope that something will spark a memory or create an idea in his mind. Be respectful. Don't be too challenging on one hand but on the other hand we have to be advocates, and I might be the best one, since you can be in denial of your pain at times. (On a scale of 0 to 5, 5 being the most painful, how do you feel? Sometimes you say 0 and I say, "You were just vomiting in the waiting room. What do you mean zero?") Even Dad said it's time to be a little pushy, and he's from the Doctor As Diety school-of-thought.
So I will be there bright and early tomorrow with my little list of questions.
Tuesday, November 10, 2009
Another Day Without a Result
I went to the hospital at almost 5:00. You were watching TV. That's actually a good sign. We talked. You used the restroom. That's a new development. You use the restroom now, and you've been moving the merchandise. I knew that would be one criterion for your release but you didn't believe me. Now it's a moot point.
They brought you your first real meal, salisbury steak. It wouldn't have been my first meal choice, makes me too burpy. You had just had an apple juice, and it seemed to have given you a sharp pain in your side. And you had been struggling with a headache all day. You needed to sit up to eat, the doctor said he wanted you to do that. Soon after you ate a few bites of the meal, you were full. Then you wanted to lie down and rest. You had done a lot today. You'd gone out into the courtyard and down to the cafeteria. You had done lots of walking. The only alphabet tube you have left is the J. It is supposed to come out tomorrow.
Sunday I was trying to make sense out of the volumnous medical records we had picked up. I learned quite a bit about your health but was amused and intrigued by this quote from your stay in the emergency room last month:
'Patient was stable, ate, urinated, denied diarrhea, denied any pain. Was refusing meds today. 1632 called patient's home phone number and left message for wife that patient was not discharged yet.(In my line of work that's called tattling, and that's a BIG no-no.) 1635 Doctor made aware that patient left for home. Since patient was stable, no problem. 1638 found patient's phone number; spoke to patient "will not be coming back to the hospital," stated that he removed cath himself.'
I hope that tomorrow we finally get more definitive answers.
They brought you your first real meal, salisbury steak. It wouldn't have been my first meal choice, makes me too burpy. You had just had an apple juice, and it seemed to have given you a sharp pain in your side. And you had been struggling with a headache all day. You needed to sit up to eat, the doctor said he wanted you to do that. Soon after you ate a few bites of the meal, you were full. Then you wanted to lie down and rest. You had done a lot today. You'd gone out into the courtyard and down to the cafeteria. You had done lots of walking. The only alphabet tube you have left is the J. It is supposed to come out tomorrow.
Sunday I was trying to make sense out of the volumnous medical records we had picked up. I learned quite a bit about your health but was amused and intrigued by this quote from your stay in the emergency room last month:
'Patient was stable, ate, urinated, denied diarrhea, denied any pain. Was refusing meds today. 1632 called patient's home phone number and left message for wife that patient was not discharged yet.(In my line of work that's called tattling, and that's a BIG no-no.) 1635 Doctor made aware that patient left for home. Since patient was stable, no problem. 1638 found patient's phone number; spoke to patient "will not be coming back to the hospital," stated that he removed cath himself.'
I hope that tomorrow we finally get more definitive answers.
Monday, November 9, 2009
False D-Day
We thought today would be the day we would get the results of your biopsies. I jammed over to the hospital after my meetings, hoping to get to your room before the doctor. You still had the NG tube, J tube and all the other alphabet tubes in you. The doctor had been in in the morning. He was currently in surgery.
I told you that since people were finding out that we were coming up for Thanksgiving, there were some people who were inviting us over to get together. I was excited thinking that I was finally going to get to blend my old life with my new. After all the time on Facebook and at the Reunion, the people I knew in high school would get to know you. You said you didn't think you would want to socialize with anyone. I could go see them if I wanted, you didn't want to go with me. I was crushed. I didn't know what to say. It might be their only chance to meet you! You said I'd just have to understand. I don't. The light is out in your eyes, and has been since your original diagnosis. I think you have given up. A couple of weeks ago you told me you were tired of living a life where you were fighting the disease you've had since you were a teenager. You felt that knowing your life is ending was almost a relief, the cancer is giving you a way out. But don't give up completely. Make these last days meaningful and positive! Leave me and Laura with happy memories, and meet the people who will be my friends and my lifelines after you're gone.
Laura, too, has noticed that you have given up. She was afraid this was going to happen. That's why she told you not to give up when you first told her you had this cancer. She will call you and talk to you about it-----about your giving up and about how you are taking out a lot of your anger on my dad. What can we do to help you make the most of whatever time you have left?
I told you that since people were finding out that we were coming up for Thanksgiving, there were some people who were inviting us over to get together. I was excited thinking that I was finally going to get to blend my old life with my new. After all the time on Facebook and at the Reunion, the people I knew in high school would get to know you. You said you didn't think you would want to socialize with anyone. I could go see them if I wanted, you didn't want to go with me. I was crushed. I didn't know what to say. It might be their only chance to meet you! You said I'd just have to understand. I don't. The light is out in your eyes, and has been since your original diagnosis. I think you have given up. A couple of weeks ago you told me you were tired of living a life where you were fighting the disease you've had since you were a teenager. You felt that knowing your life is ending was almost a relief, the cancer is giving you a way out. But don't give up completely. Make these last days meaningful and positive! Leave me and Laura with happy memories, and meet the people who will be my friends and my lifelines after you're gone.
Laura, too, has noticed that you have given up. She was afraid this was going to happen. That's why she told you not to give up when you first told her you had this cancer. She will call you and talk to you about it-----about your giving up and about how you are taking out a lot of your anger on my dad. What can we do to help you make the most of whatever time you have left?
Sunday, November 8, 2009
Sunday, the 8th
How many days in the hospital now? Should I count? Today was different because you were tired. You had walked four times by 1:50 when I arrived. Your eyes were drooping, you were staring off into space, and you were so still. I sat with you for two and a half hours. Jeff and Larry came to see you with movies and a joke book, Rose Marie dropped by with magazines, and Pastor Keith visited. By 3:00 you were sleeping without wanting to. I stayed until almost 4:00 but I, too, was dropping off, so I went home to rest before returning in the evening with Laura.
We got back right after 8:00 p.m. You were still very, very sleepy. You NG tube was still pulling out boiled spinach, you were passing a little gas, and they were feeding you something through the J tube. Tomorrow the J tube comes out, the NG tube gets yanked, and they will see how your system moves the merchandise. I am a little worried about your sleepiness and your lack of energy. Are you only tired? Are you depressed? Do you feel completely defeated by this illness? Is this the ultimate lack of control for you? You who loves control so much. What worse news can there be than to hear that your life will be ending soon and everyone else's will go on?
Tomorrow should be D-Day (Diagnosis Day).
We got back right after 8:00 p.m. You were still very, very sleepy. You NG tube was still pulling out boiled spinach, you were passing a little gas, and they were feeding you something through the J tube. Tomorrow the J tube comes out, the NG tube gets yanked, and they will see how your system moves the merchandise. I am a little worried about your sleepiness and your lack of energy. Are you only tired? Are you depressed? Do you feel completely defeated by this illness? Is this the ultimate lack of control for you? You who loves control so much. What worse news can there be than to hear that your life will be ending soon and everyone else's will go on?
Tomorrow should be D-Day (Diagnosis Day).
Saturday, November 7, 2009
Saturday
The NG tube is still pumping dark green as if you've been on a diet of boiled spinach. But it is being neglected now, almost useless, and tomorrow it will be removed. Most of the time you have it disconnected with the pigtail tucked into itself, and the vacuum tube dangles from the cup on the wall. How things have changed! That tube was a lifeline last week and now, with your newly-piped intestinal tract, you are ready to digest food again. The tube will go; it's done its job.
When you woke this morning you took a walk. As you reached the blood transfusion rooms you found a rocker recliner someone had moved out to the hall. You sat in it. The rocking gently exercised your abdominal muscles and soothed your aching back. You were peacefully rocking away when a security guard came by. He thought you were trying to escape. They called your nurse's station and scolded Abera for not keeping better track of you. Did you forget to tell him you were going for another walk? And where did the security guard think you were going to go with your monster IV pole in tow?
I brought a beard trimmer, razor and nose trimmer today. Without warning, you shaved off your beard. I loved your beard; I thought you looked distinguished in it. I thought if you shaved your beard, I would almost want to shave my head. But once it was off, your face looked as young and handsome as it did on our wedding day. I will enjoy looking at that face again. When you were heavy, your face got very broad, your jaw wide and strong, and you looked like someone else. Now since you've been ill, you have lost a lot of weight and, if there is a tiny upside to your predicament, you look younger.
Your intestines are working and starting to make noise. like an old piece of machinery coming back to life after being offline for repairs. Slowly they creak and groan as they begin to do their job. It is painful, this reawakening, and whenever your gut starts to hurt, you take a walk and the pain subsides. You are still loving you morphine drip, so much so that you set your watch to beep at eight-minute intervals to cue you when it's time for you to make another click. Your dressing has been removed and your duodenal bypass scar is now a continuation of your triple bypass scar. If you get a longboard tattoo, it could extend from your clavicle to your navel. You are getting better.
When you woke this morning you took a walk. As you reached the blood transfusion rooms you found a rocker recliner someone had moved out to the hall. You sat in it. The rocking gently exercised your abdominal muscles and soothed your aching back. You were peacefully rocking away when a security guard came by. He thought you were trying to escape. They called your nurse's station and scolded Abera for not keeping better track of you. Did you forget to tell him you were going for another walk? And where did the security guard think you were going to go with your monster IV pole in tow?
I brought a beard trimmer, razor and nose trimmer today. Without warning, you shaved off your beard. I loved your beard; I thought you looked distinguished in it. I thought if you shaved your beard, I would almost want to shave my head. But once it was off, your face looked as young and handsome as it did on our wedding day. I will enjoy looking at that face again. When you were heavy, your face got very broad, your jaw wide and strong, and you looked like someone else. Now since you've been ill, you have lost a lot of weight and, if there is a tiny upside to your predicament, you look younger.
Your intestines are working and starting to make noise. like an old piece of machinery coming back to life after being offline for repairs. Slowly they creak and groan as they begin to do their job. It is painful, this reawakening, and whenever your gut starts to hurt, you take a walk and the pain subsides. You are still loving you morphine drip, so much so that you set your watch to beep at eight-minute intervals to cue you when it's time for you to make another click. Your dressing has been removed and your duodenal bypass scar is now a continuation of your triple bypass scar. If you get a longboard tattoo, it could extend from your clavicle to your navel. You are getting better.
Friday, November 6, 2009
Can You Ground an 89-Year-Old?
Thursday evening Dad wanted to talk about something. He said he wanted to go to dinner with three friends on Friday. He was planning to have them to the house for hors d'oeuvres and drinks at 5:00 before leaving for the restaurant at about 6:00. Dad doesn't like to buy alcohol at restaurants because it's so pricey. That didn't surprise me. He was asking my permission. I said, "Do you realize you'll be leaving the house after dark?" He looked at me quizzically. "Daylight savings time is over, Dad. When you leave the house after cocktails, you will be walking outside in the dark. Do you realize that?" Again the confused look. "So, you don't want to take Carmi, right?" "Right." "I trust these friends because Bruce is able to help you walk but it will be dark and you want to go to a restaurant in the Canyon. You will need to take your wheelchair." "Oh, I will. Yes, we take that when we go to the doctor's office." "So you promise you will go in your wheelchair and they will push you, and you won't be up walking in the dark?" "Oh, yes, yes." "We'll take the one with the small wheels in the hall here." "And you'll be home about 8:00?" "Oh, yes, yes." "So Carmi will go home about 6:00?" "Yes. I feel like I'm a child asking my mommy if I can go out." "And I feel like your mommy trying to find out if you're going to be safe going out."
Friday evening I arrived home from the hospital at about 8:10 to find Dad and company trying to punch in the keyless entry code at the front door. Oddly enough, and I didn't notice it at first, Dad was using his walker. When I figured it out, anger flashed momentarily in my eyes. That little #$%@! Where was the wheelchair? I don't know how to approach him about that. I feel betrayed! Can you ground an 89-year-old?
Friday evening I arrived home from the hospital at about 8:10 to find Dad and company trying to punch in the keyless entry code at the front door. Oddly enough, and I didn't notice it at first, Dad was using his walker. When I figured it out, anger flashed momentarily in my eyes. That little #$%@! Where was the wheelchair? I don't know how to approach him about that. I feel betrayed! Can you ground an 89-year-old?
Friday Again, Finally
Today was a stretch for me. I am feeling worn down and I suddenly realize my lack of exercise might be interfering with my ability to handle stress. I must get on the bike tomorrow morning before I do anything else. I won't wait for the caregiver; I will leave Dad sleeping while I go. I must do it for my sanity.
Work started with a meeting that wasn't really boring. It was long and way behind where my staff is. It was hard to listen to people who passionately felt they were teaching us something we didn't know but were actually talking about something we did over fifteen years ago, and it felt like they were talking down to us. The kids were the kids, and that's always interesting, always good for taking your mind off other things. The day started with a screaming tantrum that ripped the papers in my hand and upended my purse while a grandma left a little one who didn't want to be there. As it turns out, little one had her best day ever but it started rough. I held her gently while she did a face-on-the-floor scream-out. We had our final art class. It was a little sad because the art teachers have been with us for eighteen years. We are disbanding our own little home-grown program because we've been accepted by an established and comprehensive arts collaborative. I went to the hospital at 3:00.
You weren't quite as perky today. You had gone for a walk but had put on some underwear. Shortly after you started out, you realized that the elastic was going right across your incision. Bad choice for you, and you went back to your bed for an hour and a half of pain. Click click click. You were feeling better by the time I arrived but complained about back pain and the bed. You had me check the floor for another type of bed but I found none. The hospital must have bought the same bed across the board. They were going to get you some type of air mattress this evening. Your pigtail was leaking a bilious liquid onto the bed. The morphine drip had been removed and you were solely dependent on click click click. The intralipid IV kept beeping that there was some kind of flow error. And you are coming down with a cold. A runny nose with a nasogastric tube must be miserable. It was an annoying afternoon for you.
It is pancreatic cancer awareness month. I hit some websites and learned some things. As I had feared, it is the deadliest cancer, and 76% of all people diagnosed with it live less than one year. Remarkably, though, there is no screening exam for it. I would like to find a way to help raise awareness for developing and providing a universal screening test for pancreatic cancer. It's so lethal. There are no easily-identifiable early indicators and so, it isn't really discovered until it is very far along. And back pain is one of the not-so-easy-to-recognize symptoms. But we still don't have a solid diagnosis. Monday, at the latest, will be a very telling day.
Work started with a meeting that wasn't really boring. It was long and way behind where my staff is. It was hard to listen to people who passionately felt they were teaching us something we didn't know but were actually talking about something we did over fifteen years ago, and it felt like they were talking down to us. The kids were the kids, and that's always interesting, always good for taking your mind off other things. The day started with a screaming tantrum that ripped the papers in my hand and upended my purse while a grandma left a little one who didn't want to be there. As it turns out, little one had her best day ever but it started rough. I held her gently while she did a face-on-the-floor scream-out. We had our final art class. It was a little sad because the art teachers have been with us for eighteen years. We are disbanding our own little home-grown program because we've been accepted by an established and comprehensive arts collaborative. I went to the hospital at 3:00.
You weren't quite as perky today. You had gone for a walk but had put on some underwear. Shortly after you started out, you realized that the elastic was going right across your incision. Bad choice for you, and you went back to your bed for an hour and a half of pain. Click click click. You were feeling better by the time I arrived but complained about back pain and the bed. You had me check the floor for another type of bed but I found none. The hospital must have bought the same bed across the board. They were going to get you some type of air mattress this evening. Your pigtail was leaking a bilious liquid onto the bed. The morphine drip had been removed and you were solely dependent on click click click. The intralipid IV kept beeping that there was some kind of flow error. And you are coming down with a cold. A runny nose with a nasogastric tube must be miserable. It was an annoying afternoon for you.
It is pancreatic cancer awareness month. I hit some websites and learned some things. As I had feared, it is the deadliest cancer, and 76% of all people diagnosed with it live less than one year. Remarkably, though, there is no screening exam for it. I would like to find a way to help raise awareness for developing and providing a universal screening test for pancreatic cancer. It's so lethal. There are no easily-identifiable early indicators and so, it isn't really discovered until it is very far along. And back pain is one of the not-so-easy-to-recognize symptoms. But we still don't have a solid diagnosis. Monday, at the latest, will be a very telling day.
Thursday, November 5, 2009
The Day After
Today I went to work, with mixed emotions. We have always let each other have a lot of space in the hospital, not that I've spent too much time in one. My only time in was when I had the baby. You've had several stays, this one being the longest. I'm so glad you're at the Kaiser closest to the house because I'm doing a lot of driving. Work was fine; it just flew by. I got you a wireless card from the cell phone company and then drove over to see you.
You were walking, sitting in a chair, and you seem to be gaining so much strength. After your walk the nurse moved you to a room in the corner near the nurse's station. She said it is her favorite room. It has big floor-to-ceiling windows and looks down on an intersection. I like it, too, but it feels smaller than your other room. You asked for ice chips but the nurse said no way, and I was unwilling to go get you some or tell the nurse the ice was for me. Roger was there and he told her we only wanted the ice to chill our beer. Roger did, however, brought you TicTacs, and you ate a box. Here's hoping nothing bad happens.
We couldn't get the wireless card, which is really network connections in a thumbdrive, to work on the laptop. I had thought we didn't have Vista on that computer. We do, which means we may have to return the thumbdrive.
Bev came over again, and she and I went to dinner while you visited with Roger. And when I was leaving the hospital, Marty and Josh were coming in to visit you. I felt good. I know now that we will have some time to do some great things.
You were walking, sitting in a chair, and you seem to be gaining so much strength. After your walk the nurse moved you to a room in the corner near the nurse's station. She said it is her favorite room. It has big floor-to-ceiling windows and looks down on an intersection. I like it, too, but it feels smaller than your other room. You asked for ice chips but the nurse said no way, and I was unwilling to go get you some or tell the nurse the ice was for me. Roger was there and he told her we only wanted the ice to chill our beer. Roger did, however, brought you TicTacs, and you ate a box. Here's hoping nothing bad happens.
We couldn't get the wireless card, which is really network connections in a thumbdrive, to work on the laptop. I had thought we didn't have Vista on that computer. We do, which means we may have to return the thumbdrive.
Bev came over again, and she and I went to dinner while you visited with Roger. And when I was leaving the hospital, Marty and Josh were coming in to visit you. I felt good. I know now that we will have some time to do some great things.
Wednesday, November 4, 2009
Duodenal Bypass Day
Today was a huge day. I am tired, tired, tired, and you are in pain, pain, pain. You have a self-regulating morphine drip. Click click click, your are constantly gripping that little trigger. I think I would be doing the same.
The day started when they came to get you at 6:15. I arrived at 6:45 to find your room empty. I was disappointed. And then they weren't quite sure which was your operating room. I wandered in the direction they had indicated. Finally I came to a minimally invasive surgery waiting room. Since there was no other place open, I inquired. The woman at the desk said you were there. Bev arrived after she, too, had done some significant wandering. We waited. I asked if the doctor was available. The woman took me to see you. The nurses were so helpful. They introduced themselves to me and told me what each of their jobs were. You had some kind of gas mask on and told me the nurse was sending you to Hawaii. "Without me?' I asked. "Have a nice time swimming with the turtles." We spoke so briefly, and then they wheeled you away.
Bev and I went down in the hospital cafeteria. The food was good, and I hadn't had such an ample breakfast in months. We talked, we laughed. She is such good company, so positive, so cheery, so easy to be with. We went back up to the waiting room and at about 11:00, the doctor came to speak to me. He said he had tried to do the bypass and the tissue sampling laproscopically but had to open you up in order to get a sample the pathologist would accept. You would be in a fair amount of pain but they would give you meds for pain management. You have a nice future scar. I asked him if he still thinks you have malignant cancer and he said yes, he just hasn't actually proven it yet. Right now he thinks you have a rare form of pancreatic cancer. This diagnosis is still iffy-sounding. I asked ALL my questions and he patiently answered them, staying with me for as long as I wanted to talk. You will eat again, your recovery will take several weeks, you'll be referred to an oncologist and will be healed enough to start chemo within four to six weeks.
We were then directed to go to another waiting room. We went for coffee first, and then up to the waiting area. We sat for a long time. I was wondering whether or not they had taken you out of recovery while Bev and I were at coffee because my phone had rung several times and we might have been gone longer than I thought. Suddenly they were walking down the hall with you. I motioned to the nurse that you were 'mine' but she stared blankly at the windows. I followed your bed and found you at the elevators. You saw me and motioned for me to come with you. The nurse and attendant encouraged me to get in the elevator. We went down one floor and they took you to a new room in the east wing. You were clicking away at your pain management button, trying to go to the happy place. You were getting there.
After Bev and I got you settled in your new room, you said you would like to sleep. I went home to rest assuming that the coffee I had had would preclude any napping for me but the ability to rest in bed would be more than enough. I stayed there for three hours, talking on the phone most of the time, but dozing a tiny bit. We have many caring people in our lives, and they are rallying around us. It's such a good feeling.
When I returned to the hospital you seemed to have been waiting for me but I reminded you that you had said you wanted to sleep. To you each passing minute had been endless. I can understand. The hospital is a boring place and pain makes time go by so slowly. I stayed an hour and a half and left at 8:00 to relieve Carmi. I will return tomorrow after school. Bev will meet me there at 3:00. She's so amazing. I don't think she's rubbed off on me enough yet.
The doctor said you can enjoy Thanksgiving but I forgot to ask him if you can drive up north. I will need to ask him the next time I see him -----or have you ask him. Or I guess I can leave him a note. He loves his job, he's told you that twice. I am so glad. That's the kind of doctor everyone should have.
The day started when they came to get you at 6:15. I arrived at 6:45 to find your room empty. I was disappointed. And then they weren't quite sure which was your operating room. I wandered in the direction they had indicated. Finally I came to a minimally invasive surgery waiting room. Since there was no other place open, I inquired. The woman at the desk said you were there. Bev arrived after she, too, had done some significant wandering. We waited. I asked if the doctor was available. The woman took me to see you. The nurses were so helpful. They introduced themselves to me and told me what each of their jobs were. You had some kind of gas mask on and told me the nurse was sending you to Hawaii. "Without me?' I asked. "Have a nice time swimming with the turtles." We spoke so briefly, and then they wheeled you away.
Bev and I went down in the hospital cafeteria. The food was good, and I hadn't had such an ample breakfast in months. We talked, we laughed. She is such good company, so positive, so cheery, so easy to be with. We went back up to the waiting room and at about 11:00, the doctor came to speak to me. He said he had tried to do the bypass and the tissue sampling laproscopically but had to open you up in order to get a sample the pathologist would accept. You would be in a fair amount of pain but they would give you meds for pain management. You have a nice future scar. I asked him if he still thinks you have malignant cancer and he said yes, he just hasn't actually proven it yet. Right now he thinks you have a rare form of pancreatic cancer. This diagnosis is still iffy-sounding. I asked ALL my questions and he patiently answered them, staying with me for as long as I wanted to talk. You will eat again, your recovery will take several weeks, you'll be referred to an oncologist and will be healed enough to start chemo within four to six weeks.
We were then directed to go to another waiting room. We went for coffee first, and then up to the waiting area. We sat for a long time. I was wondering whether or not they had taken you out of recovery while Bev and I were at coffee because my phone had rung several times and we might have been gone longer than I thought. Suddenly they were walking down the hall with you. I motioned to the nurse that you were 'mine' but she stared blankly at the windows. I followed your bed and found you at the elevators. You saw me and motioned for me to come with you. The nurse and attendant encouraged me to get in the elevator. We went down one floor and they took you to a new room in the east wing. You were clicking away at your pain management button, trying to go to the happy place. You were getting there.
After Bev and I got you settled in your new room, you said you would like to sleep. I went home to rest assuming that the coffee I had had would preclude any napping for me but the ability to rest in bed would be more than enough. I stayed there for three hours, talking on the phone most of the time, but dozing a tiny bit. We have many caring people in our lives, and they are rallying around us. It's such a good feeling.
When I returned to the hospital you seemed to have been waiting for me but I reminded you that you had said you wanted to sleep. To you each passing minute had been endless. I can understand. The hospital is a boring place and pain makes time go by so slowly. I stayed an hour and a half and left at 8:00 to relieve Carmi. I will return tomorrow after school. Bev will meet me there at 3:00. She's so amazing. I don't think she's rubbed off on me enough yet.
The doctor said you can enjoy Thanksgiving but I forgot to ask him if you can drive up north. I will need to ask him the next time I see him -----or have you ask him. Or I guess I can leave him a note. He loves his job, he's told you that twice. I am so glad. That's the kind of doctor everyone should have.
Tuesday, November 3, 2009
Twas the Night Before Surgery
Today I took some significant steps toward sharing our situation at work. First, I called my friend, Julie, who is still at home recovering from liver cancer, and told her. I hadn't wanted to burden her with your news because she has been fighting her own fight so bravely, and she has really beaten the odds. But it was time for her to know; you're going into surgery tomorrow, they will take a biopsy, and it just can't be the big secret it's been up til now. She was wonderfully supportive! She gave me tips on support groups and was very pleased with the things we have done up to this point in your battle. Then I finally told my exercise partner. I couldn't keep doing Pilates alone with her twice a week without telling her. She used to be my jogging partner twenty-five years ago. We've known each other for thirty five years. It was time for her to know too. Then finally, I went to Roberta. She lost Roger fifteen months ago. He had melanoma for only nine or ten months. Finally, they had set off on one of their dream vacations, only to come home two days later for him to die. I needed to talk to her and find out the things I need to know that I don't know that I need to know. She was very helpful. There is still more I must ask her. She talked about so many odd things but they were feelings, situations, inklings I have already been having. I learned so much.
Tonight I was invited to a birthday party, a girl thing, for a newer friend of mine. I really wanted to go but at the last minute decided that, despite loving my friend and really wanting to be with her on her birthday, I wanted to be with you more. I was glad I did. We spent three and a half really good hours together. We walked, sat, talked, gave you a sponge bath, got in trouble with the nurse for eating ice chips and discussed the surgery. The doctor wants to do two things: bypass your duodenum and get a tissue sample to biopsy. He will try to do it laproscopically, but will open you up if he has to. The surgery will take about three hours, he says now. It will be done upstairs in the brand new operating room. The facilities sure are nice. I will go at about 6:45. He will talk to me if I'd like, so I'm writing down my questions. You could be home by the weekend. That would be good. Then we'll have a Bob's Big Boy.
Tonight I was invited to a birthday party, a girl thing, for a newer friend of mine. I really wanted to go but at the last minute decided that, despite loving my friend and really wanting to be with her on her birthday, I wanted to be with you more. I was glad I did. We spent three and a half really good hours together. We walked, sat, talked, gave you a sponge bath, got in trouble with the nurse for eating ice chips and discussed the surgery. The doctor wants to do two things: bypass your duodenum and get a tissue sample to biopsy. He will try to do it laproscopically, but will open you up if he has to. The surgery will take about three hours, he says now. It will be done upstairs in the brand new operating room. The facilities sure are nice. I will go at about 6:45. He will talk to me if I'd like, so I'm writing down my questions. You could be home by the weekend. That would be good. Then we'll have a Bob's Big Boy.
Monday, November 2, 2009
89-year-old Teenager
Dad is no match for your alpha personality. He has always controlled a household with his quiet, calm voice. That has not worked at all with you. You don't play his game of quiet control, a place for everything and everything in its place. No sirreee...But as predicted, your absence has given him the courage to try to exert himself in the house. Like when the strict parent goes away leaving the teenagers with the gentler, more flexible parent, the kids soon try to get that parent to change the rules. "Can't I drive the car to school?" "Do I have to come home at eleven? Can't I stay out until midnight? I won't get in trouble. I'll be fine. blah blah blah........badger badger badger........let me wear her resistance down, she's overwhelmed by this anyway...she won't have the energy to resist me if I keep asking her.........So Dad started, "I want to go out to lunch with my friend and I don't want the caregiver to go. We want to have lunch alone. We want to talk privately. David can help me. I can walk fine." "No, Dad, David isn't able to help you well enough." "Yes, you just haven't seen him helping me around the house." "Yes, I have. It's not the same. You will be out in public and walking a lot farther." "Well, I just thought we'd tell the caregiver we're meeting some of David's former co-workers for lunch and he can stay here at the house and wait for us." "Don't lie to him, Dad. He can help you get into the restaurant, and I'll give him some money to go to the Thai place to eat." "We just don't need him." "We need him. I don't need anything to happen to you right now. I don't know what I'd do if you fell and broke a hip right now." This conversation repeated itself as if in a continuous loop. Finally, I spoke with David. He completely understood. Even as they were walking to David's car, Dad was trying to get the caregiver to wait on the porch while they went. Thankfully, David told him to come along. I covered my face in my hands. Do I have an 89-year-old teenager on my hands?
Today came another attack. "Can we move this juicer Bill just bought off the island? It's really in the way." "No, Dad. It's fine there. We can work around it."
Then to Laura he said, "These two piles of mail just sit here. No one does anything with them and I don't know where my mail is." "No, Grandpa, they're not in my way. I don't mind them there."
If I started drinking, I wouldn't be able to take my NyQuil before bed.
Today came another attack. "Can we move this juicer Bill just bought off the island? It's really in the way." "No, Dad. It's fine there. We can work around it."
Then to Laura he said, "These two piles of mail just sit here. No one does anything with them and I don't know where my mail is." "No, Grandpa, they're not in my way. I don't mind them there."
If I started drinking, I wouldn't be able to take my NyQuil before bed.
Monday and it's November Already
If there is a way this stress is manifesting itself, it is through exhaustion and a lingering cold. This second cold I've had is just dragging on and on. I was in a half-day meeting today and two of the four other people had brand-new raging colds. I was very careful to avoid them all morning. What I don't need is another stress illness. When I went to visit at the hospital today, I was tired. The hospital makes me tired. You looked and me and said, "You look like you want to crawl in this bed with me." I said, "I do." So I did. We turned out the light, closed the door, and two minutes later your IV monitor started beeping incessantly. "Let me look at that monitor. Oh, geez, zero minutes left on your IV drip. They have to come in and change the bag, and this thing is going to keep beeping until they do." End of nap. It was a good thing, though, because the pastor walked in five minutes later. I'm so glad he didn't catch us in bed together.
Laura and boyfriend had scoured the city looking for TicTacs and sweatpants for you. And, oddly enough, they didn't find any cinnamon TicTacs until they got to the hospital gift shop. It had never been open when I had come to visit you. Laura cleaned them out of cinnamon TicTacs. But when you ate them, they turned your NG sludge bright red. That was much too alarming for any of us, so you had me pack up the cinnamons until after your surgery and the removal of the tube.
Another day in the hospital, still don't know where your tumor is. I hear they took a biopsy of your duodenum but they don't have the results yet. When I asked you whether or not the doctor was going to take a tissue sample for a biopsy on Wednesday you said no. When I asked why, you said they were waiting for the biopsy of the duodenum to come back. I still wanted to know why they weren't going to pursue getting the biopsy of the tumor and you said you didn't want to talk about it. You were tired and you wanted to go to sleep. You had had a lot of visitors today, you had walked twice for a half hour each time. That had worn you out. So we hung up.
Laura and boyfriend had scoured the city looking for TicTacs and sweatpants for you. And, oddly enough, they didn't find any cinnamon TicTacs until they got to the hospital gift shop. It had never been open when I had come to visit you. Laura cleaned them out of cinnamon TicTacs. But when you ate them, they turned your NG sludge bright red. That was much too alarming for any of us, so you had me pack up the cinnamons until after your surgery and the removal of the tube.
Another day in the hospital, still don't know where your tumor is. I hear they took a biopsy of your duodenum but they don't have the results yet. When I asked you whether or not the doctor was going to take a tissue sample for a biopsy on Wednesday you said no. When I asked why, you said they were waiting for the biopsy of the duodenum to come back. I still wanted to know why they weren't going to pursue getting the biopsy of the tumor and you said you didn't want to talk about it. You were tired and you wanted to go to sleep. You had had a lot of visitors today, you had walked twice for a half hour each time. That had worn you out. So we hung up.
Sunday, November 1, 2009
November 1
As the past few days have gone by, I have felt tremendous relief as I've watched you regain your strength. Your color looks like you've been out in the sun, and tonight you walked up and down the hallways dragging your IV along with you. You had a nice brisk pace but there is still something very not right with you. Your eyes are still dull, you seem sad and withdrawn. You told me you don't like not knowing whether or not you'll be alive in 15 days. I don't know if that's a number you plucked out of the air, but I found it to be curious. It has begun to gnaw at me, this not really knowing. Will we know for sure after your surgery on Wednesday?
Laura and boyfriend arrived at 7:30. As I showed her the pictures from your endoscopy, I began to understand them better. There is a large cyst in your liver and shadows behind some of the other ultrasound shots, especially the pancreas, but there were no notations around them. Perhaps they are normal shadows. I could see how there was a shiny film over the food that was trapped in your stomach, the film that encapsulated the food that spurted out of your mouth and nose when Charles inserted the nasalgastric tube. You felt it had been like a bubble, and tonight I saw what you meant.
We sort of watched the World Series game. At times you were excited, interested and making comments. At other times you were quiet and withdrawn. You ate scads of TicTacs and we poured lots of Sprite over ice cubes. Finally, one of the nurse's aides brought you an entire pitcher of ice. It saved us all a lot of work. You even drank some of the Sprite; you'd never done that before.
I was so tired today. We set the clocks back last night. It's always a bit of a tough transition.
Laura and boyfriend arrived at 7:30. As I showed her the pictures from your endoscopy, I began to understand them better. There is a large cyst in your liver and shadows behind some of the other ultrasound shots, especially the pancreas, but there were no notations around them. Perhaps they are normal shadows. I could see how there was a shiny film over the food that was trapped in your stomach, the film that encapsulated the food that spurted out of your mouth and nose when Charles inserted the nasalgastric tube. You felt it had been like a bubble, and tonight I saw what you meant.
We sort of watched the World Series game. At times you were excited, interested and making comments. At other times you were quiet and withdrawn. You ate scads of TicTacs and we poured lots of Sprite over ice cubes. Finally, one of the nurse's aides brought you an entire pitcher of ice. It saved us all a lot of work. You even drank some of the Sprite; you'd never done that before.
I was so tired today. We set the clocks back last night. It's always a bit of a tough transition.
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