Feeling better and heading out

I woke up this morning--after sleeping through the night for the first time in quite awhile--feeling much better. I am still very weak, but nothing is hurting and I am just taking everything very slow and easy. The sun has come out and we are going to leave for Plymouth as soon as Marty gets back from his morning meeting.

Ann is here with me and just did an incredible job of getting all the tangles out of my hair that probably hasn't been brushed in more than a week. I still have to get dressed and have some lunch to be ready to leave.

I will probably use up a lot of energy today and be exhausted tomorrow, but I'm choosing to do that over just sitting here and staring at the TV. I want to do as many enjoyable things as possible and will use whatever energy I can build up to do fun things with Marty. I know he loves it when I feel up to going out.

So many weird feelings

Yesterday was an awful day. It wasn't pain, it was an inexplicable feeling that something I couldn't explain was wrong. I wanted Marty to stay close to me, which he did, and eventually I started feeling a little better. When Nancie arrived I didn't feel even up to a sponge bath, but eventually I started feeling a little better and she did wash me in bed a little, which was refreshing.

I have a new volunteer, Mindy, who came for her first visit yesterday. I was really sorry that Caren left (I had a card from her today saying that her work schedule had gotten really crazy). I think she is the only one who can figure out how to get the information back onto my Palm Pilot (it is on a CD that Jim tried playing around with, but he couldn't get the information to sync). I think I will ask Howie if he can figure it out, or we could try the Computer Cafe (they're the ones who put it on the CD in the first place.

Mindy is a critical care nurse, and she said she wanted to see what the "other side" was like--people who stay at home and get comfort care, rather than intense medical interventions. We had an interesting talk about how important it is to respect people's wishes, whether they are for more or less intervention.

Today I've been having strange, stabbing pains in my temples, lasting only a few seconds, but very intense. I called Lauren, who said she had no idea what was going on (I didn't expect her to--my whole medical history has been symptoms that don't fit patterns and can't be explained). But, tired as I am, we're going to try to go out tomorrow--even if it makes me exhausted, it's better than just staying home. There's a jazz festival in Plymouth and the weather is supposed to be good (it's been raining all day today).

Tired in body, tired in mind

Things are a little better today than yesterday, and yesterday was slightly better than the day before, so I guess the trend is upward, but so slowly and slightly it's hard to see. Nancie was here yesterday, but I felt too tired for a shower, so she gave me a sponge bath, which was refreshing, although certainly not as good as a shower. If I feel like this tomorrow, I should be able to take a shower.

Meanwhile, my book light turned up (it was under the bed), and I ordered some new microwave popcorn poppers, similar to the ones that I had before whose lids apparently got thrown away (they're not identical, but I think should work equally well).

I'm having terrible trouble remembering things, which might be, at least in part, because of the morphine. I'm trying to make sure that things get written down, because I will just forget things people tell me. I'm also having trouble remembering words, which is a big problem for me as a writer and a wordsmith. I find myself saying things like "the thing that goes on the thing..." which is very frustrating.

Last night Marty and I watched Obama's speech to Congress on health care reform, which was better than I had hoped for but not as good as I would have wanted. He did use the word "lie" to refer to the awful things Republicans have been saying (like "death panels"), and he did endorse the public option, although rather tepidly. And he continues to call for bi-partisanship, which I think is a lost cause. A congressman from South Carolina yelled out "You lie" when he said that the bill didn't cover illegal immigrants, which has proved very embarrassing for the Republicans. What happens in the next few days will be crucial, as we will have to see where Obama is going to dig in and not "compromise" away anything further.

Mysterious pain

Twice last night I woke up literally screaming with pain--an intense, sudden onset pain in my jaw and upper chest. While I know that this is sometimes associated with heart attacks, it has happened to me in the past and each time my heart has been checked out it has been fine. My blood pressure continues to be low and no one has an explanation for this. Both times I took some morphine and ativan and eventually got back to sleep, but as a result neither Marty nor I got very much sleep last night, and I have been very groggy all day, without being able to nap.

I am looking forward to discussing this whole situation with Lauren. For some reason, the pharmacy has been sending very small amounts of morphine, which means I am going through it pretty fast. The bottle they delivered yesterday was just about one-fifth full; and not only that, it had a safety cap that was jammed on so that it was impossible to open, and we basically had to destroy the cap in order to get to the medicine. Safety caps are a bother even when they work correctly, for someone like me with arthritic hands and fingers--to have one that's broken is ridiculous.

There are a lot of changes happening. Katrina was here today for what she said will be her last visit, and it is not clear who will be replacing her. I certainly need to have a social worker. And Caren, one of my volunteers, left a message through Terry, the volunteer coordinator, saying that she is over-extended and won't be coming back. I will really miss her, but I've already been assigned a new volunteer, Mindy, who will be coming on Friday. Tim was here today and will go back to his Monday morning schedule starting next week.

Sometimes little things can get me upset all out of proportion. The other day I asked Marty about making some popcorn, which we haven't had in a long time. I have these great gadgets that pop corn without any oil right in the microwave, but we couldn't find the lids for them and I think they may have gotten tossed during a big throw-away a few weeks ago of lots of miscellaneous plastic storage containers. I got really upset because it shows me how much I have lost control of little things like knowing where things are in the kitchen. I went on line and found something roughly similar which I ordered (we improvised the other day by using the containers with wax paper held on with rubber bands as covers). I guess it's a lot of things converging--being so tired, dealing with this mysterious pain, and not knowing where things are. Fortunately, Judy was able to find two other things that were missing--my "itty bitty book light" which comes in so handy when I want to read in bed while Marty is sleeping, and a bottle of nail polish that I had used the other day and needed to fix up some chips. Lots of things seem to end up under the bed, for some reason.

I'd probably feel better if I could sleep.

Exhaustion and pain

I know that a lot of people get worried about me when I don't post for several days, so even though I'm feeling pretty lousy I'm going to try to write at least a short entry. I have been feeling very weak for the last few days, doing a lot of coughing which tires me out, and Louise, my hospice nurse, Marty, and I all feel that the best thing to do under the circumstances is to use enough morphine and ativan to stay spaced out or napping. So I've been sleeping a lot both day and night. On Friday and Saturday nights I decided to sleep on the lounge chair in the living room, as I thought that sleeping in a propped up position would probably be more comfortable and lead to less coughing, which was pretty successful, but last night I slept in bed and that worked pretty well, too.

Louise was here this morning for her usual Monday visit (I think Lauren will be back from vacation tomorrow), and I was feeling about the same, so once again we decided I'd use morphine and ativan to try to stay comfortable, but then a short time after she left I began to experience some pretty intense pressure pain in my jaw and chest, which was scary (even though I've had this pain before and I know it is, at least in part, gas). We were worried that I might run out of morphine; Louise called in an order for that and some other drugs I was running low on, but the pharmacy said they couldn't deliver until tomorrow morning. So it was a nice surprise when they showed up a few hours later with all the drugs I had ordered.

Laurel was here for a good part of the day, and Marty was able to go out to the grocery store and some other errands, and he said he will need to do more things out tomorrow (Laurel will be here again). Also, Tim is coming for a visit and Katrina as well.

I had a lovely note from Harvey Rosenthal of NYAPRS (New York Association of Psychiatric Rehabilitation Services), which will be giving me their Lifetime Achievement Award at their conference later this month at their annual conference, which is at a Catskills resort. He wanted to know if it would be possible for him to come to visit and make a video to show at the conference, and I told him that it might be possible, if I were feeling up to it, for Marty and I to drive there (about a four hour drive). So we're going to leave both possibilities open.

Yesterday Marty got me out of the house for a little while--it was a pretty day, a bit cool but nice and sunny, and we went to Middletown, about a forty minute drive north, where there is a famous ice cream place, Richardson's, where they actually have the cows that give the milk that they use for the ice cream. I had a cup with black raspberry and something called "death by chocolate," and Marty had double Dutch chocolate and mint chocolate chip. It was a nice outing but left me very tired.

Now I'm hoping I can get a good night's sleep and maybe feel better in the morning.

Another spaced out day

I got some sleep but woke up much too early, around five, but then was able to get back to sleep and to my surprise both Marty and I slept till almost nine. I had been taking the morphine and atavan consistently during the evening, but they had gotten out of sync during the night and I was feeling pretty awful. I called hospice and Louise stopped by--for one thing she needed to order more morphine for me, and she helped to get me back on the schedule. At that point I was feeling very agitated, with odd stabs of pain, and just wanted to get back to the alternating spaciness and sleep which seems like the best I can do under the circumstances. Eventually I did get the medicines balanced and drifted off to sleep for a while.

Nancie came at twelve-thirty. I didn't feel strong enough to take a shower, so she gave me a sponge bath, which was refreshing, and changed the sheets on the bed. As she was leaving Laurel arrived, and I've been alternately awake and asleep all afternoon.

The good news is that I'm typing this on my new computer, which Jim set up for me yesterday. It will take me a little while to get used to it but so far everything seems fine.

A better way of handling feeling rotten

I woke up at five this morning feeling miserable--struggling to breathe and just feeling not right in some undefinable way. I told Marty that I'd been reading in hospice literature how people could choose to feel more sedated or less sedated depending on what else they were willing to tolerate, and that this definitely seemed like a time to be more sedated. I called hospice and spoke to Louise (Lauren is still on vacation) and she said she would stop by. When I discussed it with her, she said they had just been discussing a different dosing strategy for morphine, in which I would take a smaller amount but more often, as well as using ativan regularly, and it has been working really well. I've been drifting in and out of sleep and when I'm awake I'm calm and relaxed.

Katrina came by with the completed application for the Dream Foundation (which is like the much more well-known Make A Wish Foundation, only for terminally ill adults). Marty and I decided that the trip to New York, to see "West Side Story," was a good thing to ask for, since it seems to be in good agreement with their guidelines. For hospice patients, the application has to come directly from hospice--the only part I had to write was a description of what I was asking for. I had to sign it in several places, and Katrina is putting it in the mail today (they take applications only by mail).

When we were about to drop Donna off on Sunday Marty raised the topic of a conference he wants to go to in Philadelphia in a couple of weeks. It seems he's already discussed it with Donna, and she would be willing to stay overnight while he is gone (with PCA assistance during the day), and he wanted to know what I thought. I told him I thought it could work, but I also had a strong emotional reaction, which I didn't discuss until we got home (I didn't think it was a good idea while he was driving). But I did ask him to consider how he would feel if I died and he wasn't here, and he said he certainly has been giving that some thought. He's still very ambivalent about the trip and hasn't done any real planning (it's the weekend after next), so I'm not sure what will happen. There's another conference coming up in October that he wants to go to as well. The whole idea really scares me, but I know that it's important for Marty to keep up his involvement with things that are important to him--he'll need that involvement even more after I die. I'm sure we'll be talking about it more.

I think I'm ready to drift off again.