Thursday, July 30, 2009

Exertion and coughing

It has now reached the point where the tiniest exertion--sitting up, walking to the next room--sets off a fit of gasping and coughing. I spoke with Louise (who is filling in for Lauren), who spoke with the hospice doctor, and this afternoon he prescribed another medicine that's supposed to help with the coughing. So far I've taken two doses and haven't noticed any difference, but I will wait until at least tomorrow before making a judgment.

Meanwhile, my PCA Susan seems to have disappeared. She was away for two weeks, but when I talked with her late last week she said she'd be doing her usual Tuesday, Wednesday, and Thursday afternoons this week. Then she called on Tuesday to say something had come up that she had to attend to, but she'd be here on Wednesday. Since then, nothing. I've called her several times and left voicemail, but haven't heard back. This afternoon, I added "I hope you're okay"; it's very mysterious.

Because of all this coughing I'm totally exhausted, and have been drifting off to sleep a lot during the day. Yesterday I was just coming awake from a nap when my phone rang and I heard Marty answer it, "Judi Chamberlin's phone." I was awake enough to let Marty know that I wanted to know who it was, and he said "He says an old friend of yours." I got on the phone and it was my old friend John, who I was out of touch with for quite awhile until a few months ago. We caught up on where things were in our lives, and he said it was possible that he might be making a trip to Massachusetts around the time of my party! That would be great--it's been years since we've seen each other.

Meanwhile, I've gotten a video from Dan Fisher to show (he's going to be on vacation that week), and today there was an e-mail from a group in Portugal that I've done work with, and they said they'd be sending a video too. Things are beginning to come together.

Now I have to hope I won't be too exhausted to enjoy it.

Wednesday, July 29, 2009

Nothing much happening

I'm still very weak and don't feel much like doing anything (including writing). I never made it into the living room today because the slightest exertion was setting off a coughing fit, although fortunately I seem to have stopped doing that by late afternoon.

My stomach is still somewhat sensitive and I'm eating things that sound good (regardless of whether they are technically easy to digest). Yesterday I asked Laurel to go out to the nearby wonderful Quabrada bakery for a pumpkin muffin--I ate half mid-morning and the other half for lunch (such as it was). Today for lunch she went to the Arlington Diner and got me a burger (well done, no bun), with some cole slaw and french fries. They had a hard time with the concept of "no bun" and actually put it on a bun, which she tossed when she got home (we both got a good laugh out of that). For breakfast, I had some Progresso macaroni and bean soup; yesterday for breakfast Marty made me an egg salad sandwich on whole wheat toast, which I had been craving. I try to think out of conventional categories of breakfast food; I don't like most traditional breakfasts, especially most forms of eggs. When I was in Japan, I really enjoyed Japanese breakfasts, which contain a lot of things that are very non-traditional to western eyes (or taste buds).

I've run into my first real frustration with the hospice program. Because it is so small they have only one home health aide, who is on vacation this week. I finally overcame my resistance to having someone bathe me, and I'd much rather not have one of my PCA's do it (for such an intimate service, I'd rather it were someone with whom I had a more impersonal relationship). Lauren said on Monday that they hoped they'd have a fill-in who'd be able to do it by Wednesday, but today it turns out it won't be till Friday. I'm smelly and sticky from the high fever I had on Sunday and would just love to feel clean.

Tuesday, July 28, 2009

Sick and tired and frustrated and...

Sunday was another horrible day when I was running a fever and felt just awful; making it even worse is that I was sick to my stomach and kept throwing up just a little bit at a time. I called Lauren several times and after giving advice on the phone she came over in the late afternoon. By that time I was semi-delirious (my body does not deal well with fever) and probably pretty irrational. I was frightened and was wondering if this was how I was going to die--hardly the peaceful picture that's been described to me (and that I saw with my father, who did die a very peaceful death in hospice care).

Lauren's bag of tricks included two medicines that she administered by suppository (I told her I doubted any pills would stay down)--tylenol for the fever and compazine for the nausea, and within an hour or so I was feeling a lot better, just totally exhausted. No one is sure where this fever is coming from, but it certainly makes me feel totally debilitated and unable to think straight or make decisions. Of course, then everything falls on Marty and that makes it hard for him.

By yesterday I was feeling much better, just tired from the previous day, but today I have a new symptom, a nagging, tickle in the back of the throat cough that is wearing me out. I've already spoken with Lauren once today and will probably call her again.

I'm just so weary and so sick of being sick.

Saturday, July 25, 2009

I hate this damn disease!

I had a lot of trouble sleeping last night, because all night I was struggling to breathe, even with the bi-pap mask on (which usually helps a lot). It felt like there were tight bands around my chest, and I could take only very shallow breaths. Maybe if I had come a little more awake I would have taken some morphine or done a nebulizer treatment, but I was in a half-awake state where I just wasn't thinking (kind of like one of those nights when you're awake enough to know you need another blanket but not awake enough to actually go and get it).

When I woke up for good around six I was feeling really miserable--exhausted from lack of sleep and the effort of breathing. Lauren is on call this weekend, and I've spoken with her several times today. She had me doing nebulizer treatments every couple of hours, and things finally eased up by early afternoon--I'm breathing more easily and no longer feel that intense tightness in my chest. But it's left me feeling very weak--I'd love to take a shower but just don't have the energy. I've been relaxing on my lounge chair, watching TV, dozing, and talking with Judy, who is here all day as Marty had things he needed to do.

It is so hard to feel myself getting weaker and weaker. Everything is becoming more of a struggle--the last few times we've been out, it's been a major effort to get from the house to the car. Once I'm in the car, I can slowly catch up with my breathing, but it becomes one more obstacle to getting out and doing things.

I had an e-mail this morning from someone at Jacob's Pillow--good news and bad news. The facility is reasonably accessible and it sounds like they will figure out a way to deal with any problems, but there are no tickets left to see Jason Samuels Smith, which is very disappointing. I will look over the rest of the schedule and see if anything else appeals to me. It would be a lovely drive out to Western Massachusetts and Marty is always interested in the two of us doing things together, even with whatever obstacles we have to deal with (I say we, but of course it all falls on him).

I am just so sick of being sick!

Friday, July 24, 2009

More ups and downs

I try not to get discouraged when I have a down day, and yesterday fortunately things were going much better. Katrina, the hospice social worker, came in the morning and had a good discussion with Marty and me, focusing on how each of us could get the supports we needed. I told Marty that I worry when I see him getting so exhausted, and we talked a lot about how he needed downtime when he wasn't doing chores, or going to meetings, or taking care of me--time just for himself to recharge and relax. One of my maxims over the years of doing advocacy work is that if you want to take care of other people you have to make sure to take care of yourself!

We also talked about how I am going to need additional PCA hours, and I told Marty and Katrina that Diana had suggested a friend who might be interested in helping, and late yesterday afternoon she stopped by so we could get a chance to meet each other. Her name is Patti and I think we both felt that it could work out well, so I told her that the next time I had some available hours I would call her and we could both get a sense of things.

Judy was here a good part of the day, and among other things put fresh sheets on the bed--after lying in my own sweat all day on Wednesday that felt so good! I never made it into the living room and my wonderful lounge chair on Wednesday, but spent most of the day there on Thursday, and am here once again today. Yesterday was very muggy and we needed the air conditioning (an absolute essential for someone with COPD). Fortunately, it rained all night and the air quality is much better today.

Lisa, who usually gives me my massage at eleven on Thursday mornings, called to ask whether I could skip a week, or, if I really needed her, if she could come a bit early, and I'm so glad she agreed to come. When she arrived, I had a pretty bad headache, so she worked on my head for awhile, which was very soothing, and then started to work on my feet. I told her that the top of my head felt much better, but I still had intense pressure in my sinuses, so she came back to my head, and very gently but firmly used her fingers along the ridge of my cheekbones, and I could feel a release--a pleasant, tingling feeling that moved all the way down my spine, and suddenly all the pressure in my sinuses was gone. It was really amazing, and the sinus pressure has not come back since.

Marty and I for some reason stayed up quite late last night, and when I tried to go to sleep (I think it was after one) I managed to stay asleep for only a very short time before waking. I read for awhile, slept for awhile, and that pattern continued all night--I don't think I slept for longer than forty five minutes at any one stretch, and this morning I was feeling quite groggy. I was hoping to nap during the day today, but I actually feel more alert right now (it's early afternoon), although I haven't slept. Ann is here (Marty is out running errands), and if I feel strong enough I'm going to take a shower later.

We're talking about some possible day trips, and maybe even an overnight. I saw something in the New Yorker about a dance performance at Jacob's Pillow (in western Massachusetts) by a tap dancer named Jason Samuels Smith, who was a protege of Savion Glover, a dancer I adore (who was himself a protege of the great Gregory Hines). I checked out the Website but couldn't find anything about wheelchair accessibility so I am e-mailed them for information. I haven't been there since I was a teenager and took a little vacation with my mother. Marty is always enthusiastic about getting me out, so we will see.

Thursday, July 23, 2009

Another lost day

I never really woke up yesterday. I kept drifting in and out of sleep and don't really remember all that much. I know that at one point Lauren was here (I'm not sure if I called her or Marty did) and when she took my temperature discovered that it was over 100 degrees, so she started me on a regimen of tylenol and extra nebulizer treatments, and said I was probably coming down with some kind of bug. For most of the day, I wasn't hungry at all, but by late afternoon I was beginning to feel a little better, and when I took my temperature it was back to normal.

I have only the vaguest memory of Caren arriving; she was the one who finally figured out how to post the invitation to the event on the blog (thank you, Caren, for your wonderful computer skills). I hope people can read it in the enlarged format, but at least all of you can see the beautiful results of Marty's talent as a graphic designer.

Because of sleeping so much of the day, things got a little bit time-shifted--I know I had some buttered pasta at about nine, and really startled Marty when I asked for some more after midnight (as he was getting ready for bed himself). Despite all the sleeping I did during the day, I slept most of the night as well. I woke up at one point and ascertained that it was about four A.M. I had to go to the bathroom, but I felt strong enough to do it without waking Marty, and then went into the kitchen and got a can of ginger ale. I can read in bed without waking Marty, so I read for awhile until I got sleepy again, and then slept until nearly seven. I was glad Marty was still sleeping as he was exhausted.

We were out a good part of the day on Tuesday, which felt really good (although I guess I overtired myself). First, we picked up Marty's friend Sherif and went for lunch to Rubin's, a kosher deli in Brookline. I have two favorite things there, so I decided to have a brisket sandwich for lunch and get a take-out order of stuffed cabbage (so you can have your [metaphorical] cake and eat it too!). After dropping Sherif off, we went to Home Depot to get a new dishwasher, which unfortunately won't be delivered until next Tuesday. It's easy to shop there because they have motorized carts (sparing Marty from having to lift the scooter out of the trunk and assemble it). We then drove to the other end of the mall to go to shopping for a dress for my event. Marty got a wheelchair from customer service for me--I'm not sure if this was more effort for him than the scooter would have been, but it was drizzling and he especially did not want to be assembling it in the rain. The last two times he's had a lot of difficulty getting the two main parts to snap together and he's getting worried that there may be a part that is bent, which is going to need to be checked out.

The first store we went to, Filene's Basement, had absolutely nothing even remotely suitable--the only dresses I saw were prom dresses and the like. (For the uninitiated, Filene's Basement at one time was actually in a basement, but now has a number of branch stores in the northeast.) As we were about to leave the mall, I saw an Ann Taylor outlet store, and we decided to look there. I found a very simple blue dress, which I liked, and which Marty did too. Because of all the prednisone, I'm not sure of my size, so we looked on the rack for a twelve and a fourteen, but found only a twelve. When I took it into the fitting room, there was a fourteen hanging there, which was a good thing, because when I tried it on it was obvious I never would have gotten into the twelve!

We then drove to another mall, directly across the road, where Marty had to do some paperwork at the Registry of Motor Vehicles, while I sat in the car, with the air conditioner running; I reclined the seat, and I think actually managed to nap a little. But I became concerned about the portable oxygen machine--this is the little one that fills from the big oxygen tank that sits in the kitchen, and is refilled weekly by the oxygen company. The indicator showed that it was still half full, but I didn't feel the little puff of air so wasn't sure if I was getting any oxygen. I know this happened once before with our previous oxygen company, and the guy who came brought a replacement machine and told me that these machines need occasional refurbishing (possibly correlating with the number of times they get dropped?), so we will have to see how this company handles it (Lauren was here earlier and said she would call them to deal with this problem). Until then, we will use the portable concentrator when we go out (which presents its own set of problems regarding keeping it charged).

By the time we got home I was exhausted, but after yesterday's lost day, I feel pretty much back to baseline now, although baseline is somewhat of a floating target these days.

Wednesday, July 22, 2009

Invitation to Judi's Celebration

Marty and Julie are sending out this invitation to my Celebration. Please click on it to enlarge.

Monday, July 20, 2009

Just like the Marx Brothers!

Today has been like something resembling the stateroom scene from "A Night At The Opera." Within a short period of time (although I don't think everyone was actually here at the same time) we had Laurel, Tim, two visitors (my friends Can and John), three plumbers, and three house cleaners. Can was trying to interview me on video for some training materials he's putting together on recovery and the consumer movement, the plumbers were coming in and out (today is the day my dishwasher decided to die--another visit of the gremlins, I guess!), so they were dealing with that and a recalcitrant toilet, and meanwhile Laurel and Tim were trying to figure out how to get a copy of the invitation to my "celebration" onto this blog (without success so far). All this time, I was reclining comfortably in my chair watching things unfold, and Oliver was wandering around getting people to tickle him (Gilbert, the shy cat, had the good sense to stay out of the maelstrom). To add to the confusion, the phone must have rung at least ten times.

Earlier, Lauren had been here with one of the other hospice nurses, and was glad to see that I was feeling much better than I had on Saturday. It really does seem, though, that I have taken another downward step in terms of energy levels and breathing capacity, as the short walk from the bed to the bathroom, for instance, now leaves me feeling totally winded. Once I get settled down somewhere, particularly in the lounge chair, which I find the most comfortable place, it doesn't take that long for my breathing to return to normal, and I feel that I could get up if I needed to and take care of whatever needs doing, but of course when I try I am very quickly reminded of how weak I am.

My spirits remain high, and I continue to be able to extract pleasurable things out of nearly every day. Marty and I can almost always make each other laugh, and being silly together is very important for both of us. Getting out as much as we can is a big part of trying to lead as "normal" a life as possible, and we keep adding to the list of places we want to go (mostly day trips). Lauren has talked with the people at the oxygen company and we now have a plan for overnight trips--although the portable concentrator is not compatible with my bi-pap machine, they said they will deliver a full size concentrator to our destination and pick it up in the morning. They are also going to deliver a second supplementary power supply for the portable, which will extend battery life considerably.

Responses are beginning to come in to the invitation, and I am really happy that we decided to do this. When I first brought it up it seemed like it would be difficult to pull off, but with so many people working together we will make it happen.

Sunday, July 19, 2009

A much better day

As soon as I woke up this morning, I knew things were going to be better than yesterday. I no longer had that awful achiness and lethargy, and I was quite hungry (I hadn't eaten much the day before). Marty was delighted when I suggested that we go out to breakfast, which we did shortly after listening to Will Shortz (the crossword puzzle editor of the New York Times) on NPR, which we enjoy every Sunday morning. We went to the nearby Arlington Diner, where I always order the same thing, a veggie omelet with cheddar. It is huge, with tons of onions, peppers, mushrooms, spinach, tomatoes, broccoli, and probably a few other things I'm forgetting, and with home fries, whole wheat toast, and a side order of sausage, is definitely more than I can eat at one time, but we have discovered that it all reheats successfully in the microwave, so I know what I'll be having for breakfast tomorrow!

In spite of feeling considerably better than yesterday, I can see that I continue to get weaker, and I've been resting for the rest of the day. Any little exertion leaves me gasping for breath, and I have to sit and concentrate on my breathing for awhile until I feel comfortable again. Marty went out at around one to help his friend Donna with some things, and Judy arrived shortly after he left. He had gotten me set up in the living room with all the things I needed in easy reach, including some delicious cherries, and the fan going, but when Judy got here I decided I needed the air conditioner, which is very powerful and cools off this big space in just a few minutes.

As always, having Judy around is very cheering. I haven't been into the bedroom, but I know she cleared off the collection of newspapers and other things that were cluttering up the bed, and got various other things organized ("Let me tidy up" is what she usually says when she arrives). We chatted for awhile, and then she and I sat comfortably reading. I wasn't hungry for most of the day (I'd been munching on the cherries), but eventually I asked her to bake a sweet potato for me, and I'll probably have some other light meal once Marty gets home.

One of the things I read today was an article by Peter Singer in the New York Times Magazine concerning the rationing of health care. Singer has been quite a hated figure in the disability community because of some deeply insensitive remarks he's made devaluing the lives of disabled people, but at least he addressed that question in the article, although I don't think hewent nearly far enough to answer his critics (of which I am one). But what I found most frustrating about the article was that, like almost everything else I read on the subject, he managed to address the questions of long-term and end-of-life care without mentioning the value of hospice care, which has certainly made a remarkable difference in my life, and I know the lives of many others. When something is both cost effective and better, you'd think it would be brought up more often in these discussions! It made me want to write a letter to the editor, but I'm not sure I've got the energy to do it (I think it would have to be done in the next two or three days).

Marty called a little while ago to say that Donna suggested he set up an Excel program to keep track of the responses to the invitations, so when he finished helping her, the two of them sat down and worked on that for awhile (the responses have been coming in at a steady clip). Once he was on his way back home, and Judy felt comfortable that I wasn't going to be alone for too long, she left me with some fresh iced tea and the computer, and I expect that Marty should be here very soon. I hope he's not too tired to want to attack the Times puzzle, which we started at breakfast but have barely put a dent in.

Saturday, July 18, 2009

A "lost" day

I woke up this morning feeling achy all over and just generally out of sorts. Both Marty and I lingered in bed till quite late, eleven thirty or so. I wasn't hungry and all I wanted was a cup of tea, although an hour or so later I had a bowl of pasta and butter too.

I've been in bed all day, reading a little, napping a little, watching several old movies on TV, having no energy or inclination to get out of bed at all except for a few bathroom trips. I called hospice, and eventually Lauren called me back, and after talking to me decided to come check me out. She said that, except for the fact that I wasn't running a fever it sounded like I was coming down with a cold or flu or something, so we decided just to keep an eye on things, and I am to check in with her tomorrow morning.

Marty has been working on getting the invitations out and I think they have finally all been sent. I will post a copy here as soon as I figure out how to do it. We've already started getting RSVPs back, which is exciting, as it makes it feel much more real.

Yesterday was a more energetic day. Marty was working on the invitations, and I had visits from Lauren in the morning, and then from Tim in the afternoon. I was sitting on my chair in the living room and feeling pretty comfortable, although it has gotten hot and muggy and we had to turn the air conditioner on. While Tim was here, I got another visitor, Joe, who has been active in the psychiatric survivor movement in the Boston area for many years.

Marty and I were planning to leave the house at four thirty, so we could go for dinner and then to the performance by the Palestinian group, the Al-Rowwad Theatre Troupe, at seven. Both were in Central Square (in Cambridge, about twenty minutes away), so Marty spent some time on line researching nearby restaurants, as he wanted to park and put the scooter together only once. At first, we picked a Tibetan restaurant, but it turned out it didn't open until five thirty, which we thought was cutting it a little close since the show started at seven, so we then decided on a Chinese restaurant that Marty had never been to but is one of my favorites. The only thing I wasn't sure of was wheelchair access, but he called and they told him there was a ramp.

I was tired even before we left, and I said to Marty that I didn't know how I was going to make it out to the car, but he assured me that I could lean on him and everything would be fine. It was muggy out, and when we got to the car I stood outside, leaning on it, until Marty got the motor started and the air conditioning going, as I knew how hard it would be to breathe in a hot car.

By this time it was nearly five, and when we got to the restaurant and had just gotten seated at a table, Marty suddenly realized he had forgotten his camera and definitely wanted to take pictures of the kids performing, so he left me to order some food while he went all the way back (this is just one more manifestation of how everything has been going wrong recently; another is that I had forgotten to bring my cellphone). By the time he got back he was too keyed up to eat anything, so we had the food packed up to go and walked/scootered several blocks to the theater. Almost every time we go out with the scooter I put my bears, Pinkypine, Bo-Bo, and Elbee, into the scooter basket, which they think is a great treat (especially when I go fast).

The theater was fully accessible (we had been there once before, before I had the scooter, and I was pretty sure I remembered that it was, but I called to check), and I enjoyed this performance much more than the one we saw last week. In this show, called "Blame the Wolf," the kids very imaginatively portrayed a combination of fairy stories (including "Little Red Riding Hood," "The Three Little Pigs," and others) to show that every story has many sides, and every person sees things from his or her own viewpoint. But I was feeling very tired, and since after the intermission they were going to do excerpts of the show we had already seen, we decided to leave. When we got home I was exhausted, which I guess has been reflected in how I have felt all day today.

Thursday, July 16, 2009

Things are calming down

Today has been a much better day, in all respects. By the end of the day yesterday, I was experiencing the overwhelming fatigue I haven't felt for awhile, but I think a lot of that was due to the stressfulness of the day. After a good night's sleep (an hour in the middle of the evening, and then seven more through the night), I awoke feeling refreshed. Marty had to leave the house very early, at seven thirty, and I was hoping I'd still be asleep when he left, but the cats decided to renew their war at about six A.M. directly next to and under the bed, so that woke us both up, although we did manage to get back to sleep for a bit.

Judy had said she'd be here between nine and nine thirty to give me my breakfast and stay with me till Lisa came at ten-thirty for my massage, when she would leave. Then I'd be alone for another short period until Laurel got here. Everything worked smoothly--Marty had set up everything so that Judy just had to boil water and put the cereal and milk in the bowl (he'd already cut up fruit). He'd even set up my special tea-brewing cup so all Judy had to do was pour the boiling water in (I'm a tea snob who loves my freshly brewed loose tea). Judy always arrives so chipper that it's a pleasure to have her around. Before she left she put fresh sheets on my bed.

I heard the door open and thought it was Lisa, but to my delight it was Caren, with my restored Palm Pilot! I was so happy that I gave her a hug and kissed the Palm.

Lisa gave me a very soothing massage, focusing on calming me and leaving me in a near-sleep state, although I didn't actually drift off. I was quite relaxed, in my lounge chair, and didn't have to wait too long before Laurel called to say she was finished with her doctor's appointment (for the wrist she broke in the car accident) and would be at my house in twenty minutes, so I wasn't alone for that long.

Shortly after Laurel got here Marie came for her weekly visit, and we had a good, serious talk about my complex feelings about living and dying. She's a good listener and knows how to draw me out, and I felt a sense of emotional relaxation which nicely complemented the physical relaxation that the massage had left me with.

Laurel and I spent a quiet afternoon, and after a few hours I felt strong enough to take a shower. I was feeling dirty and sweaty (today's the first day in awhile that's been humid and unpleasant), and it felt wonderful to just let cool water run over my body. It takes a lot of energy to take a shower, which I guess shows just how weak I am.

Marty and I have had a pleasant evening, and I'm looking forward to a good night's sleep in a nice fresh bed.

Wednesday, July 15, 2009

The day of the electronic gremlins

Today has been a total nightmare in the technology area. The computer shop had called a few days ago to say that the computer was dying and basically not worth fixing. The guy did say that they had made a copy of everything on the hard drive, and today Marty went to pick it up. I figured I could use it in its current state (very slow to boot up, and running programs slowly) for awhile, until I decided what to do long range.

Judy was here again today, as Marty was out most of the day. In between errands, he stopped at the computer store to get the computer, and as he was leaving again Caren, one of my hospice volunteers, stopped by. Both she and Tim have good computer skills and it looks like they will be very helpful in making sure the invitations go out, and that we keep tabs on who will be coming. Marty briefly explained to her what we needed to do, and she and I started working on putting together a list of names and e-mail addresses that the invitation will be sent to. It was at this point that we discovered that my computer would not boot up at all.

I was getting some of the names from my Palm Pilot, which is backed up on my computer. It is an old model that runs on batteries, and I got a message that the batteries were low and needed to be changed. I said to Caren, nervously, that every now and then, when changing batteries, the Palm Pilot would erase all the data and it had to be restored by pulling the data off the computer using the plug-in cradle. With all the electronic gremlins on the loose, I was really nervous about doing it, and sure enough, when I put in the new batteries and pressed the "on" button, I got the message that there was no data. I wanted to scream!

Caren said that she had Palm software on her computer at home, so I called the computer store to find out about how to get the material that they had copied off my hard drive, and was astonished when the guy told me that, basically, they would copy it back onto another computer or drive for $89! Caren promised that she would go to the place once she left my house and talk them into giving her the Palm and AOL files, which she did, and she called me later in the day to say she had the disc but would not have a chance to work on it until this evening.

Meanwhile, she and I were getting the names off the Palm (until it died) and my AOL account that I could access through, and putting them into a single address book, a job I've continued to do during the rest of the day. But all these frustrations were making me feel very tired, and I was looking forward to my acupuncture appointment with Anne, as that usually makes me feel relaxed and calm.

Acupuncture, as always, was very restful, and I was hoping to sleep. Judy helped me back to bed, but although I was exhausted, I couldn't sleep, and didn't until mid-evening, when I napped for an hour or so. I've just had a light snack and hope to be going to sleep for the night pretty soon.

Meanwhile, my answering machine is full and can't handle any more messages, and I'm afraid if I touch it it will blow up!

Tuesday, July 14, 2009

A successful procedure

We woke up with the alarm really early on Monday morning, and left the house at twenty to eight. We'd allowed plenty of time for rush hour traffic, but there really wasn't any, so we got to the pain clinic at five after eight for an eight thirty appointment. Even though I hadn't been there for about a year and a half, the receptionist greeted me by name. One thing that has always impressed me about this clinic is that everyone who works there seems to be "on message"--it's very patient-centered and welcoming.

I arrived using the portable oxygen concentrator, knowing that they would hook me up to their oxygen. Leaving Marty in the waiting room, but bringing my bear, Pinkypine, with me, I was taken into a preparation area, and seated in a comfortable recliner, where a nurse set up the oxygen (I asked her to bring the concentrator out to Marty so he could recharge it if he thought it necessary--we had run it off the car power while driving) and took my vital signs. Having been through all this once before, I knew what to expect, which made it much easier than the first time I had the procedure (two years ago almost to the day).

I really didn't think I was nervous, but the night before I had been up nearly all night, unable to sleep, which I attributed to unrecognized anxiety. So, although I was feeling outwardly calm, I know there was a lot that I was worried about. I focused a lot of that on having the IV put in--I have lousy veins, and have often had IV technicians poking around painfully trying to find a good vein. One of the many ways that hospice has increased my quality of life is that I have not had a needle stuck in me since October (the last time I was in the hospital). The nurse put the tourniquet on my arm and began searching for a vein, being very careful and thoughtful. I was clutching Pinkypine (his "job" is to get a squeeze every time I get a needle), and I was deeply appreciative when she called over one of the doctors and explained that she was having trouble, and he not only got a vein on the first try, but was so skillful that I really didn't feel it.

After that the rest was easy. Two nurses walked with me into the procedure room and helped me up onto the table. I had to lie on my stomach, with a pillow under my stomach and another under my head, and there was some adjusting until I was comfortable. I got a softer pillow under my head and squished it until it supported my head just right, and with Pinkypine clutched firmly I felt about as good as I could feel under the circumstances. Then a drug was injected into the IV line and I waited to feel the same "off in La-La land" feeling I remember from last time. Either they used less of the drug or I just had a different reaction than previously, but I never got that totally spaced out feeling, although the drug certainly did its job and I don't remember much until being told it was finished, with no real sense of time passing. I was helped off the table and back to the recliner, where I was offered something to drink with a light snack (I had ginger ale and goldfish crackers), and rested for awhile, until a nurse came to take my vital signs, which were normal, so she removed the IV and walked me back to where Marty was waiting. The only outward signs of the procedure were a band-aid on my arm and a few more on my lower back. More important is the inward result, as I am once again, pain free (my knees were aching when we arrived).

I was prepared to spend the day as I had last time, when I basically slept straight through twenty-four hours, but although I spent the day in bed, or on my recliner chair, I never did sleep. I felt a little shaky on my feet, so I had Marty walk with me whenever I needed to go to the bathroom. I didn't sleep at all until eight, when I tried to watch "Antiques Roadshow" and just saw the beginning and the end, and then was up for awhile, falling asleep around eleven and sleeping till eight (late for me). I was surprised to see Marty's side of the bed empty and I found him in the dining room already hard at work on his computer. I asked him to get my breakfast rather quickly, because Lauren was coming at nine (since she had skipped her usual Monday visit).

This turned out to be an extended visit, since Lauren had to do the paperwork for my sixty-day recertification. A lot of people think that hospice is time-limited, but the fact is that as long as a person remains medically eligible (in a disease process predicted to lead to death in the reasonably foreseeable future, and not receiving any curative treatments), there are two ninety-day eligibility periods, followed by an unlimited number of sixty-day periods. So we went through a rather lengthy questionnaire covering my medical status, needs, ability to perform daily tasks, supports, and a number of other items. This might sound dry, but Lauren related everything to me in a very personal way and it actually turned out to be an interesting and useful discussion.

In the afternoon, Katrina came for another helpful talk. She arrived just when Marty did, and he joined into the conversation, which ranged widely across topics from American history to human nature to my condition and coping skills. I like Katrina a lot and enjoy her very low-key manner.

Marty was out twice today. In the morning he had a doctor's appointment, and Judy arrived shortly before he left. Although Marty had originally said he'd be back by noon, he called to say he was stopping for lunch, and then to go to the supermarket. I asked Judy if she was able to stay, and she said she was not a problem, so she made me some lunch and we chatted for awhile. I really like Judy, and have been feeling a little guilty because when she first came for an interview and I brought up payment, she waved me off, saying she felt she was doing a mitzvah. That was fine when she came just once or twice for a couple of hours, but recently she's been coming a lot more, so when she was getting ready to leave, I told her that I was somewhat uncomfortable with the situation. I also told her that I knew that, in the relatively near future, I would be needing more coverage, and knew that she needed paid work and didn't have anything in the pipeline, so we agreed that I would start paying her from now on, with the expectation that her hours would eventually increase.

Laurel was here in the evening--she is the other person that I expect to eventually be using for additional hours, although she's not available as much as Judy is (Laurel has four young children, whereas Judy has only one). Poor Laurel has had a real string of bad luck recently--I had an e-mail from her on Sunday saying she had just been in an auto accident and had a broken wrist. I immediately called her, and she reassured me that she was fine, and that she felt ready and able to work. I was glad to see her, although it was difficult to see her helping me when she so clearly should have been at home herself with someone waiting on her!

It's after nine now, Marty is out again (Laurel left around seven-thirty--I could see she was very tired), but I expect him home soon and I will probably go to sleep shortly after he gets home.

Sunday, July 12, 2009

Lots of activity

Sorry for being gone for awhile--my computer is in the shop and I've been borrowing Julie's, which she "borrowed" back from me some time on Friday and which I didn't get back till this morning. I'm not sure I would have had much time to write in any case, since we've been really busy, which is great.

On Friday morning, during Lauren's regular visit, she agreed that the best thing to do for my leg pain was to go ahead and call the pain clinic, which I did. I spoke with one of the nurses, who said she would speak to the doctor and call me back, and I was pleasantly surprised that when she did she said he had reviewed my records and was ready to repeat the radio frequency ablation procedure, and that they had an opening on Monday morning! We have to be there at eight thirty, which means leaving the house at a quarter to eight (it would be only about a twenty minute drive at another time, but that's rush hour). Poor Marty--he's not a morning person. I'm not nervous, as I was the last time, as I know exactly what to expect, and I think I'm prepared. I remember that the first thing that happened was sitting in a big, comfortable recliner while a nurse started an IV, and after awhile being brought into the procedure room and getting onto a table. Then they injected the anesthetic into the IV line, and after that it all gets a bit hazy. It seemed like only a few minutes passed, and I remember saying "Ow!" a couple of times with no great conviction, and no real pain, and then being told it was over! And I know that when we got home, I slept for basically twenty-four hours until all the medication was out of my system.

Even the pain clinic people were surprised that the relief I got was instantaneous and total; they told me that even when the procedure is successful, it usually takes a few days to kick in, but for me it was just like someone had turned the pain switch to "Off," and it's been that way until the last few weeks. Because I expect to be drowsy and out of it all day on Monday, I've told Marty that it's important that I not be alone at all; if I need to go to the bathroom, for instance, I need someone to walk with me. He expects to be at home all day; he's been very busy with a lot of his own stuff, which is important as he really needs his "real life," aside from being my caretaker. In fact, it's because of his work that we've gotten to do some interesting things.

One of his organizations has been involved in bringing a theater and dance troupe of teenagers from a refugee camp in Bethlehem to the U.S. The group is under the auspices of a cultural center ( whose brochure says they are "a grassroots organization run by and for the community to combat violence among children, teaching them to be promoters of peace." So for the past week Marty has been really busy helping with the logistics of the visit. They arrived on Thursday (they are staying with a number of host families), and on Friday they all went to a Red Sox game, in a donated luxury box, and since there were a couple of extra tickets, Marty and I got to go, too.

We debated whether to get there by car, and attempt to find handicapped parking, or take the T (Bostonian for "subway"). I know that the station near us, which is relatively new, is fully accessible, and the station nearest Fenway Park has just been renovated, but there's always the danger of ending up in one of those "can't get there from here" situations, and Marty is inclined toward driving in any case. I looked at the Red Sox Website under "accessibility," and also called their office, but they have no special handicapped parking; only the normal limited number of handicapped parking spaces on the street. Of course, those were all full, and in the course of driving around we saw several "No Parking During Red Sox Games" areas that seemed to be logical potential handicapped parking. We ended up having to pay for parking, but at least that was in a lot directly across from the stadium, and since we had a handicapped placard were able to park in the part of the lot closest to the street.

We then faced having to get into the stadium itself. The street was jammed with food vendors and people, and we were unable to get through the crowd to a curb cut that we needed to get to the entrance that led to the elevators. At one point, a very nice and helpful security guard tried to get us through, but she finally gave up. We were right near an entrance that had one step up, and Marty asked her if, having negotiated that, we would be able to get to the elevators, and she said we would, so I got out of the scooter and two guys materialized from the crowd and lifted it up, and then everything was fine. But of course one step is the same as a flight of stairs as far as accessibility is concerned!

It was a perfect night for baseball. After all the awful weather we've been having, the sun had come out, and it was mild and breezy. Sundown was approaching, and of course at this time of year there was a long, lingering twilight, eventually giving way to night. I had brought along a little blanket for my knees, but didn't actually use it until we were ready to leave. The box itself was a bit of a disappointment, after all I've been reading about these luxury suites--the nicest feature was a large, flat screen TV (being up that high, there was actually a better view of the action on the TV). It was an exciting game, tied until the eighth inning, when the Red Sox got a run, and then holding the lead in the ninth with a quick three outs, and it was great being outdoors, being with Marty, relaxing, and enjoying feeling strong. Once the game was over, we decided to wait till the crowd thinned out considerably before leaving. Marty had located a handicapped bathroom practically right outside the suite, and I decided to walk to it rather than take the scooter. Walking back, though, I ran out of breath, and just made it back to a chair just inside the box, which I flopped onto, unable to go any further, and reminding myself, once again, just how limited my energy is.

We had decided to take the new portable concentrator and its back-up battery, both of which are rechargeable, and since there was electricity in the suite, that worked fine, although it is still somewhat discouraging what a short battery life the main unit has. I think we would have been better off taking the small refillable liquid oxygen tank, which lasts for six to eight hours, but Marty was worried about running out and having no back-up at all. So we still don't have a good, reliable way of being outside for extended periods.

Once I was breathing well again, we were able to get out of the stadium without difficulty; the curb cut we needed was no longer blocked and the car was conveniently close. Since the kids had eaten directly before coming to the game, and since food at the stadium was so ridiculously expensive, we were hungry when we left, and although it was late decided to stop for pizza at a place near Boston University that had been one of Marty's favorites back when we was a student (and which I had eaten at frequently when the Center for Psychiatric Rehabilitation was located directly across the street--it has since moved several times to other locations on the B.U. campus). He had hoped to park conveniently near (he definitely did not want to deal with assembling and disassembling the scooter again), but finally ended up dropping me off while he went to look for parking (happily, when he came around the block again he was able to park directly in front). We devoured most of a pizza (I had a slice for lunch yesterday and will probably have the remainder for lunch today), so it was quite late when we got home and we went to sleep pretty quickly. Although for most of my life part of my bad sleeping pattern has been that the later I went to sleep the earlier I woke up, my being so weak actually works in my favor in the sleep department, and I slept till close to nine (very late for me).

Yesterday was another lovely day and I sat outside for a lot of it. I needed to rest because we were going out again to see the performance by the Palestinian kids, which was held at the Palestinian Cultural Center in Brighton (a Boston neighborhood). This center was once obviously church, and it is an old building with accessibility problems, but given the wealth differential between them and the Red Sox, I think they did a whole lot better! From the parking lot there's a paved path to a stairway, on which they had set out a portable ramp that is probably a little steeper than ADA standards, but which the scooter made it up fine on high speed.

First there was a dinner, and then we moved into the main part of the church for the performance. I was very tired, it was hot, and I fell asleep on Marty's shoulder for awhile. I'm still trying to process what I saw of the performance, which I got only in fragments, although eventually I woke up completely. It was somewhat distressing, after the emphasis on peace in the brochure, to hear how much anger and violence the kids were expressing, but I know this is a reflection of their lives and what they see around them. In the psychiatric survivor movement, we have recognized that people need time (sometimes a lot of time) to work through their anger and frustration before they can do meaningful advocacy work, and I certainly can't hold another movement to higher standards. But I am looking forward to discussing it with Marty and hearing his reactions.

We left during the intermission, as I was quite tired, and so didn't get to see the dance part of the performance. I was really nervous about trying to take the scooter down that steep ramp, as it led not just to the sidewalk (on which one had to make a ninety degree turn), but also to a set of concrete steps leading down to street level, and I was afraid that, even on the lowest speed, I might overshoot the sidewalk. After giving it some thought, we asked two of the guys from the Center to roll the scooter down the ramp, which I walked down, holding onto Marty. Although the scooter has excellent braking power, especially at low speed, I realized I had only one chance, and I'm definitely not Evel Kneivel!

When we finally got home, we were hoping that Gilbert had come out from wherever he had been hiding himself most of the day, but he was still nowhere to be found, and when we woke up this morning he was still missing. We were beginning to think (as we often do when we can't find him for this length of time) that he had somehow gotten out the kitchen door and into the basement, but suddenly I heard Marty say, "Oh, my god!" and he had the experience, as I did last week, of seeing Gilbert suddenly materialize, seemingly out of thin air (that space/time thing again). Gilbert may be feeling somewhat traumatized from his visit to the vet last week. The vet called yesterday to say that all Gilbert's blood tests were normal, but she wants to further investigate the heart murmur she heard when she examined him, which means an ultrasound. I asked her whether there were potential treatments for any conditions that might show up on the ultrasound, and she said that there were, so I've decided to go ahead with it. Poor Marty--it's another morning thing; he has to be there at seven thirty on Thursday, although at least it's right in Arlington Center, just a few minutes drive away. As I told the vet, right now my main concern is that both of my cats outlive me if at all possible, as I would have a very hard time with losing either of them.

Right now I'm sitting out on my porch again. It's another lovely day, Marty is out (Judy was here earlier, and now Diana is with me), and I'm thinking about possibly taking a nap.

Thursday, July 9, 2009

What's important--and what's not

Being this sick has led to an inevitable reordering of priorities. There was a time when I never would have gone out of the house without make-up; now it's been months since I've worn any. I don't have the stamina to stand in the bathroom to put it on, and I don't have anyplace with a mirror where I could do it sitting down, so it's just become less important to me. (Of course, there were all those years when I didn't wear make-up, as some sort of doctrinaire feminism, but that's a whole other story.) Now I'm glad if my hair is brushed! My hair only looks good if it's freshly washed--I used to wash it daily, when taking a shower was something I simply did automatically every morning, rather than the occasional event, with lots of preparation, that it's become.

It becomes a choice as to where I expend my very limited energy, and if I use it up getting ready, I may never get to the actual event at all. So I have become reconciled to going out looking lousy--overweight, my clothes not fitting properly, no make-up, my hair hanging limply--rather than not going out at all. What's important is the enjoyment I can get out of the things we choose to do, like going to the festival, which was wonderful and worth all the effort and exhaustion.

Yesterday I was tired all day, after a poor night's sleep caused by waking up repeatedly with leg pain (when the pain is really bad, as it was that night, it goes from being located in my hips and knees to a generalized aching of the entire leg). I took morphine several times during the night, and then had a lot of trouble getting back to sleep each time. Doing something about this pain is now high priority. For some reason, the hospice doctor (whom I've never met, but with whom Lauren has been consulting regularly) seems to want to try to control the pain by adding and adjusting medications (more morphine, possibly a switch to the long-acting type, as well as lydoderm patches), whereas I am quite ready to go back to the pain clinic for another radio frequency ablation procedure. I am going to talk more about this with Lauren tomorrow. Pain is so limiting, and it hasn't been a problem until recently.

Marty was out a good part of the day yesterday, so Laurel stayed with me, and Tim came for a visit, since Caren is on vacation this week and she asked him to fill in for her. Tim had called on Tuesday evening after reading in my blog about the lost change purse, to say that he had seen it when he was here on Monday. I was in the living room when he came, and I asked him to go into the bedroom to see if he could find my pill-sorter box, and he told me on the phone on Tuesday that he had found the purse in the bed at the same time, and had placed it on the bedside table in the bedroom. So somehow it got knocked off the table (by me? by a cat? by the cleaning people?) and although the floor has been thoroughly searched, it has not turned up. I have calmed down about it, though, which I guess is the important thing.

Laurel left when Anne came at two to give me acupuncture, and then I rested comfortably until Susan arrived at three thirty. Since Marty was going out to an evening meeting, and since I was so tired, I decided that Susan could get me back to bed and give me an early dinner (Chinese leftovers) before she had to leave at five thirty, and I'd be fine alone since I was probably going to doze off anyway, which is what happened.

Now it's Thursday morning, my knees don't hurt, I got a reasonable amount of sleep, and I'm hoping for a better day. And Thursday is massage day, which is always a treat!

Tuesday, July 7, 2009

Problems with the space/time continuum

Marty and I have a running joke about Gilbert's ability to find the crease in the space/time continuum, which is the only way we can explain his ability to suddenly materialize after we have searched the entire apartment. Now other things seem to be disappearing into this black hole as well.

When we got home on Sunday evening, I unpacked the small bag I had used instead of carrying my big purse, in which I had been carrying essentials like my medicines, the scooter key, sunglasses, and similar items. I had decided, instead of taking my big wallet, to put some paper money, my driver's license, and my credit card in a change purse, and that went into the small bag. I distinctly remember unpacking it, and I think I remember putting it into the small basket that sits on my bedside table, which holds all my daily essentials. The bottles of morphine and ativan were there the next morning, but the change purse wasn't, and Monday turned into a rather frantic day of looking for it. Laurel was here, and she and Marty did a lot of searching. Complicating matters was that my house cleaners were here, and they sometimes put things in weird places (I didn't realize it was missing until after they were gone), but I know them well enough to know that when they find something they think is important they will bring it to me.

My reaction was out of proportion, as I became really distraught and just couldn't calm down. Laurel had stripped the bed and put everything into the washing machine, and she even checked through the sheets and stuff just in case it had gotten bundled up and put through the wash, but it wasn't there. By the time we went to sleep last night I had accepted the fact that it was lost, but I was still really upset. I am the kind of person who very rarely loses things, so when I do it becomes a really big deal.

I had a lot of strange, dark, apocalyptic dreams, of which I remember only fragments, but which somehow seemed to be a way of working through my emotions, because when I woke up I was calm. I remember that when my daughter's house burned down about ten years ago, and she had a really hard time for awhile dealing with losing most of her possessions, after awhile she realized "it's just stuff." No one was hurt, the children (who were four and two at the time) never saw the fire (which she was sure would have been emotionally devastating for them), and, amazingly, a few things survived the fire that truly were irreplaceable (including videos of the kids and their hand-knitted by Grandma baby sweaters). So this morning I was able to say, "It's just stuff," and, of course in this case just a few small things. I've already cancelled my credit card (which, several people have assured me, means that it will now miraculously reappear), and I've been told that I can get a replacement driver's license on line (which is much better than having to deal with a trip to the Registry).

Then, a couple of hours ago, I couldn't find my Palm Pilot, and all the frantic feelings came flooding back. In this case, we knew we had seen it since we got back, and after a short period of searching it turned up in a pile of newspapers, and I was able to calm down right away, but it really does feel like there is an opening in the space/time continuum that things are falling into (a complicating factor in this case is that my computer, on which I back up all my Palm Pilot data, is in the shop, so I couldn't access the information that way). While it was missing I called Laurel (who was here briefly this morning), who hadn't seen it, and who was quite relieved when I called her back to report that it had turned up.

Lauren arrived for her usual Monday morning visit at nine, finding me gasping for breath after a short trip to the bathroom, and when she took my blood pressure and oxygen readings they were definitely not normal--my usually low blood pressure was way up, and my oxygen level, which is usually 97 or higher, was about 90, scarily low. After a few minutes, I asked Lauren to trace the oxygen hose back to the tank, and she discovered that the nasal cannula wasn't attached to anything! I'd come awake at about six, taken off the bi-pap mask, put on the cannula, but I guess fell back to sleep before hooking it up to the oxygen supply, which of course explained why I was so extremely short of breath and getting these weird readings. After a short while back on my oxygen things got back to my baseline readings, which was reassuring.

We also talked about incontinence and my decision to start using Depends, and she explained that when my body was really struggling to breathe it prioritized things, and that breathing was definitely first, so there wasn't enough energy for other things, like holding my bladder sphincter closed. I'm trying to feel psychologically comfortable with this, but since peeing all over myself is definitely humiliating, and since no one can see that I'm wearing a diaper, it definitely is the lesser evil.

I'm also getting myself organized to start sending out the invitations to the event. Caren, my volunteer, did some work last week on getting me set up on, and this morning Julie, who has used it a lot, gave me a brief tutorial and answered some questions I had. Marty is working on getting the invitation into a format that will be easy to transfer into e-vite, and I have a pretty good idea of at least the first round of invitees. I'm going to ask people who receive the invitation to spread it to others in their immediate networks, and I'm including a sentence on how important it is for people to RSVP so I can get an idea of the numbers to give to the caterer. Whether you receive an individual invitation or not, all my readers are invited (either in person or to send in something by e-mail or video); I'll post a copy of the invitation here as soon as it is finalized.

I called the caterer this afternoon, and they don't need a precise headcount until seventy-two hours beforehand, which is reassuring, and they are sending me a sample menu so I can get some idea of costs (at this point I have no idea). It's an afternoon event, so people I hope won't be expecting a meal, but I want enough food so that it won't look skimpy. I've been to a number of Boston University events, and their food is wonderful.

Also this morning, Marty took Gilbert to the vet, as she thought it wise to check him out as well as Oliver, to see if there was anything she could find that was contributing to the hostilities between them (which seem to have calmed down considerably). She thought that the general commotion in the house (in which we used to have so few people coming in and out, and now have so many) could be a factor, and she also found some potentially serious health problems, including a heart murmur (she is doing some blood work to see if she can find a cause), and some dental problems. Like Oliver, he was really easy to examine and she found him very lovable.

Katrina, the hospice social worker, was here this afternoon, and she suggested I try the Boys and Girls Club right here in Arlington as a place to swim. They keep their pool at 83 degrees, and said that I could use a lane during the adult lap swim hours, which are every afternoon, so I think it's something we'll be checking out soon.

After three days of beautiful weather, we're back to dreariness and thunderstorms. Marty and I want to do as many enjoyable outdoor summer things as we can, so we need the weather to cooperate!

Sunday, July 5, 2009

The rest of the weekend

On Saturday, once we got to the festival, we had decided I should call hospice and speak with the nurse on call and explain the problems we were having with the bi-pap and the portable concentrator, and ask whether, under the circumstances, it was better to go with just the oxygen or just the bi-pap. The first nurse I spoke to was very understanding, but, even better, she said that Lauren was the other nurse on call, and in a few minutes Lauren called me back. She asked whether I used the bi-pap because of snoring or sleep apnea, and I said that it was neither, but that when I slept in the lab they determined that my oxygen levels dropped very low when I was asleep. She said that in that case I should use just the oxygen.

After that, I turned the ringer on my phone off, since we were listening to live music, so it wasn't until several hours later when I turned it back on that I found a message from Lauren that she had called the oxygen company and arranged for them to deliver a full-size concentrator directly to the hotel (they have a branch office in or near New Bedford). I was just so impressed with her taking the initiative on this and making sure I had everything I need. We had to make a couple of calls back and forth to the woman from the oxygen company to work out the logistics, but when we got back to the room that evening the concentrator was all set up, and she had left a message about coming to pick it up in the morning.

Once we had gotten things recharged on Saturday, we went to listen to some more music, and Marty said that it was clear that we had to keep the charging cords with us, since we couldn't count on the batteries to last through a whole day's activities. We were able to listen to several performances, and when we headed back to the hotel it was pretty late in the evening. We parked, and I told Marty I had to go to the bathroom pretty badly, so he said to go ahead and he'd get some things together and come in after me. I got inside the door of the corridor where our room was, but after just a couple of steps it became very clear that I wasn't going to make it in time and I started to pee. It was such an awful, exasperating, and humiliating situation, and for some reason I decided it would make less of a mess if I lay down on the floor, which was carpeted. I knew it would scare Marty to see me lying on the floor but I figured as soon as I heard the door open I would quickly tell him that I was all right. But when he did come in I could hear him talking on his phone (obviously to Donna) and when he saw me he said "Oh my god" or words to that effect just as I was getting out "I'm all right, I'm all right." I guess it took him a few seconds to figure out that I really was all right, and he told Donna he'd call her later, helped me up, and got me into the room where I took off all my wet clothes and cleaned myself off. I guess the time has come to bite the bullet and start wearing adult diapers--apparently, when I exert and start gasping for breath this causes my urinary sphincter to release. I hate the idea of wearing diapers, but I guess it's preferable to the alternative.

Despite the bad start, we managed to have a very pleasant evening, with lots of cuddling and affection. Marty is such an amazing person and I feel so lucky to have him in my life. He just seems to take in stride all the various kinds of unpleasantness that come along with being so sick, and to let me know in so many ways that he still sees and loves the person I still am underneath it all.

For some reason, I didn't sleep well, waking up a number of times, and when I opened my eyes again at seven thirty Marty was already showered and dressed. He had realized that he had never charged the scooter battery, and couldn't find the charging cord. He went out to the car but it wasn't there, and then I remembered that it was in my suitcase, since when we were leaving the house Marty realized it wasn't packed and I had stuffed it into the top of my suitcase, so that was one little mystery solved. We went to breakfast, and I called Cindy, the woman from the oxygen company, who said she was just a few minutes away. I told her she could find us in the dining room, and said she'd recognize me because I was the person with a cannula in her nose!

We were hoping for equally good luck as on Saturday with parking near the festival site, but instead went around and around for probably an hour or so. We both think that a festival this size should pay some attention to the issue of handicapped parking, but they don't. There are a few handicapped spaces on the street, but all of them were taken. There is a municipal garage, so we checked that, but since the elevator was broken we were limited to spots on the lowest level, and there weren't any available. We even tried calling the New Bedford Police to see if they would be helpful, but they weren't. Finally, in exasperation, Marty parked at a hydrant, left me sitting in the car, and walked down to talk to the people selling wristbands, telling them either he wanted a refund for Sunday or they should find us a place to park. Fortunately, he found a very nice man who said that a nearby bank parking lot might be available, and that he personally would go stand in a spot until we arrived!

Marty had packed a portable cooler with drinks, which for some reason he decided not to take on Saturday, so we ended up buying some quite overpriced drinks. So today we decided to take it, although Marty was not looking forward to lugging it around, but when he set up the scooter I asked if it would fit on its platform, which it did, quite nicely, saving Marty quite a bit of heavy lifting and saving us lots of money on beverages.

By this time, we had missed one of the performers that Marty had wanted to see, but we did end up seeing a number of enjoyable performances, and I was able to time my bathroom breaks so that I didn't run into any problems in that department.

The first performance we attended was in an indoor auditorium (most of them were outdoors, in tents), and when my concentrator started beeping we turned out to be seated right near an outlet, so Marty plugged in both the concentrator and the battery pack, and that got us through the rest of the day. We're going to have to have a talk with the oxygen company about all of this equipment, as it doesn't meet all of our needs.

At another performance, held in a tent, we noticed a bunch of picnic tables just outside the tent, along with a Middle Eastern food vendor, so we could still hear the music while we ate some yummy giro sandwiches. Lucky for me, there were also porta-potties in the same general area.

We left for home around seven, tired but happy, and very glad not to run into any serious traffic, considering it was the end of a holiday weekend. When we pulled into the driveway, Marty told me to go straight in and see if I could corral the cats in the bedroom, so he could bring stuff in from the car without having to worry about doors being open and cats getting out. But the minute I got into the house I headed immediately for the bathroom, and wet my pants again! I cleaned myself up and got out the package of adult diapers that Lauren had left here weeks ago, so I guess I'm reconciled to this further descent into invalidism.

Saturday, July 4, 2009

Having fun...if only the equipment would cooperate!

We actually got out of the house, as planned, just about one o'clock. Ann was very helpful with the packing and organizing and getting the car loaded. We were using the new concentrator, which consists of a unit about the size of a purse that can be worn over the shoulder, and which runs on car current, house current, or batteries, and, for extended life, a separate battery pack which can be worn around the waist. Together, the guy from the oxygen company had told us they should last about ten hours on battery.

Traffic was pretty bad leaving the city but eased up, and we decided to stop for lunch while still on the road. There weren't great choices--we settled on an Uno, which used to be mainly pizza but now has a more general menu, and I had a pretty good Cobb salad, plus a mini-dessert (a really excellent idea, just a couple of bites of brownie and ice cream). We got back on the road and had a little trouble finding the motel, which is set back from the road without much signage. When we went to register, we got a shock when the desk clerk said that Priceline had cancelled our reservation, but she was very nice and played around on the computer, and was able to get it reinstated. I have no idea what the problem was--I've used Priceline so often, and never had a problem.

The "suite" turned out to be all one big room, but divided into areas, with a full kitchen, dining/work table, a couch, and a comfortable bed. We had asked for an accessible room in the hope that the bathroom would have one of those nice walk-in showers, but the accessibility is just that the bathroom is oversized and has a sink that a wheelchair can pull up to. We had decided not to take the scooter into the hotel at all, saving Marty the work of unloading and reloading it, but we still had lots of stuff to bring in; Marty was able to get the hotel's wheeled cart, so he could do it all in one trip, but it was still a lot of work for him.

My knees had started hurting a little in the restaurant, so I'd taken some morphine, but I was feeling pretty good. We both rested, and worked on Thursday's crossword puzzle that we had started earlier. I thought Marty was going to fall asleep but instead I did! When I woke up, Marty suggested that he go out to a nearby supermarket and bring back some food that we could heat up or microwave, rather than going out, so we had a late dinner (veggie lasagne for me, and fish for him), along with some wine.

Marty set up things for the night, with the oxygen line from the portable concentrator going into the bi-pap, and just as I was falling asleep it started to beep. I think he was able to get it to stop beeping once, but then it started again and we called the oxygen company. The guy called back pretty quickly and suggested something (I was half asleep and Marty was dealing with it), but just as we were getting to sleep it started beeping again, and the final upshot was that the guy concluded the portable was incompatible with the bi-pap, which was not what we wanted to hear! We decided I should sleep just with the oxygen, eliminating the bi-pap for the night; we also decided that once we got home we'd take the matter up with the oxygen company, as this was definitely not satisfactory! To add to Marty's exasperation, I was able to go back to sleep quickly each time, while he was awake from tension and ended up getting only a few hours of sleep in total.

When I woke up it was after eight-thirty and Marty had already taken a shower. He was eager to get to breakfast (served in the hotel lobby and included in the room rate), so I got dressed and we got all my breathing paraphernalia together. Breakfast turned out to be surprisingly good--they had a waffle machine and batter--the waffle was really good, and I ate it with some cut up fruit rather than the fake syrup which is basically just sugar.

It took only about fifteen minutes to drive into downtown New Bedford. Marty wasn't sure how we'd make out with parking but he found a spot on the street only a few short blocks from the festival site. He put the scooter together and, using bungee cords, was able to attach both parts of the oxygen equipment to the back of the scooter, and we were off. We quickly found the entrance to the main stage, where the acts that Marty wanted to see were playing, and bought wristbands that are good for all stages, both days, for only $15. I put mine on the scooter basket and Marty attached his to his camera case (not wanted to risk losing them taking showers and such). I asked if there were wheelchair seating but the woman who sold us the wristbands said Marty should just sit in an aisle seat and I could sit next to him.

Marty has been to this festival a number of times, and was familiar with many of the performers. I wasn't, but I enjoyed everything we heard, although I was hearing it in a somewhat hallucinatory way, because of the morphine and the fact that I kept drifting into a semi-sleep state. All was going well until the portable unit started to beep, much sooner than expected, and Marty had to switch the power over to the portable power pack. We listened to some more music, and did a little looking in the craft areas (although it was difficult because a lot of the streets were cobblestone and the scooter had a tough time), but all too soon the power pack started beeping. Marty said he'd go back to the car to get the power cord, and we could go into the administration building and find an electric outlet to recharge. Of course, this was all a real pain and not at all what we'd been led to expect in terms of battery life.

Once we found a place to recharge the power pack, and I had gone to the bathroom after getting a sudden, extreme urge (negotiating some rather scary ramps, but making it in time since the women standing in line let me go straight to the accessible booth), Marty decided we should go back to the car and sit there while the portable charged off the car battery. He asked one of the workers if it was all right to leave the battery pack charging where it was, and they told him it was fine, so we went to the car, plugged in the portable and turned on the air conditioning, and did the Sunday puzzle from a few weeks ago that we'd never got to. In all that time, the portable charged to only 50% of capacity, but we figured that plus the battery pack would give us sufficient time, plus I was urgently needing to use the bathroom again. I was a little scared that I wasn't going to make it in time, but fortunately I did (there was no line this time).

We then had a late lunch in the food court area adjacent to the main stage, so Marty got to hear one of the performers he had been waiting for. I noticed that there was an entrance to the main stage directly from the food court, with a worker checking for wristbands (previously, we'd had to go around in a big circle), and it was at that moment that Marty realized that he didn't have his camera bag (to which he'd attached his wristband). We were both reasonably certain that he'd left it in the car, but it was still a bit nerve wracking, both from the fear that it was lost (it did turn up in the car), and because we weren't sure we could get back in, although we were pretty sure we could talk our way through it. But then Marty noticed that the worker was chatting and not looking at any one's wristband, so we just strolled right in and listened to some more music.

There's more to write, but we're both tired and ready to go to sleep, so I probably won't finish this until we get home tomorrow night.

Friday, July 3, 2009

P.S. Gilbert is safe

We spent a couple of hours worrying, checking known hiding places, but no Gilbert. Marty went down to the basement to look around, but there are so many nooks and crannies down there, and not much light, so it's not surprising that he didn't find anything. He left some cat treats on the top of the basement stairs, a trick that's worked before. We started talking about whether we'd be able to leave tomorrow if he was still missing.

I was lying in bed, and suddenly Gilbert appeared and jumped up on the bed like nothing was wrong. I have no idea where he had been; it was as if he had suddenly materialized. So we have no idea where his hiding place is; we're just very relieved that he's back from wherever he was.

Thursday, July 2, 2009

Will it ever stop raining?

After yesterday's thunderstorms, I had hoped we'd awaken to sunshine, but it started out dreary again, and then there were several even more intense thunderstorms. We had to go out early this morning to go to the bank to get a document notarized, since Lisa was coming to give me my massage at eleven and Marty had things he had to do in the afternoon. A little after nine, there was a very loud clap of thunder and the lights went out for a few seconds, but fortunately, it was raining only lightly when we left for the bank. We also took my computer to the repair place, since it is once again running so slowly that I feel like I'm wrestling with it, and I have borrowed Julie's laptop again.

The weather forecast for the weekend looks promising, so I'm hoping we're able to go to the festival and not be stuck in the hotel. I'm feeling good, the last time I took morphine was at some point during the night, and the massage I got from Lisa took care of an incipient sinus headache. Tonight and tomorrow morning we need to get organized and packed--Ann will be here, which will be helpful in getting all our paraphernalia into the car. Ideally, we should be on the road by one, so we can spend a leisurely evening getting settled and be well rested for Saturday morning.

The only problem right now is that we can't find Gilbert. Laurel was helping Marty unload groceries from the car, and it seems that the door was left open briefly. Gilbert's very good at hiding, and he doesn't like any form of commotion, so the chances are excellent that he's somewhere in the apartment, or down in the basement, but I won't relax until we find him.

Wednesday, July 1, 2009

A pretty good day (with the aid of morphine)

I woke up around five with my knees aching and took a full syringe of morphine, and after a little while the pain eased up and I felt a pleasant wooziness, and was able to get back to sleep till almost eight. Since then I've been using occasional doses of morphine, alternating with ativan, to keep things under control; along with the acupuncture treatment I received this afternoon, I'm feeling pretty good physically, and in good spirits.

Caren was here for a short while this morning; she is helping me set up an account on e-vite to send out the invitations; once it's set up, the site automatically keeps track of who has and hasn't replied. I have a partial list of people to invite (based on the e-mails I sent out back when I first went into hospice), which I need to update. Having projects to work on makes me feel good. Caren also brought me some yummy cookies from Lakota Bakery (, having gotten clearance from the volunteer director that it's okay to bring me goodies.

Marty left early in the afternoon after giving me some soup for lunch (I had a grilled cheese sandwich for breakfast, so wasn't that hungry); I was alone for a short while until Anne arrived to give me my acupuncture treatment, and then briefly alone until Susan came. Now I'm alone again, feeling quite comfortable; I'm expecting Marty's call in a little while asking me what he should bring me for dinner (it's going to be my old faithful Singapore noodles again); he'll be going out to an evening meeting as well. I called Diana to see if she could come this evening, but she said she was going to a concert this morning (sounding almost apologetic--of course I told her not to be silly, and to enjoy herself). I'm sure I'll be fine--I'll eat dinner, then get into bed and watch some TV, and probably fall asleep.

Lauren called earlier today; she discussed my pain with the hospice medical director and they want me to try some patches that are applied for twelve hours for pain control purposes; once the pharmacy delivers them I will experiment (Lauren was very clear that this was an adjunct to the morphine, not to replace it).