Monday, August 31, 2009

Another rough day

Although I've been saying that I'm willing to use up energy doing enjoyable things, I guess I will end up paying for it by having lousy days like today. On Saturday, Marty, Donna, and I went out to dinner, and on Sunday we took Donna home by way of Wollaston Beach, where we went to one of the fried clam places. Sunday morning Donna and Marty were doing more organizing, and I decided to check on what I needed to do to claim the rebate for my new computer (which is still sitting untouched). It turned out that the rebate materials had to be postmarked by yesterday, which, since it was a Sunday, meant going to the one post office in Boston that is open on Sunday. Although Marty, Donna, and I had all been to this post office, which is near South Station in downtown Boston, and so knew exactly where it was, Marty checked the post office Website, which said that it had been moved to a different address, so he went to Googlemaps to print out how to get there. By the time we left the house it was mid-afternoon, and we then proceeded to get totally lost, going around in circles on roads which didn't allow us to turn off, going under streets we needed to be on, and so forth. Finally, we ended up at a road that led to the central post office, but it was blocked by a barrier and a guard, who told us that we had to go around in a big circle, which brought us to the place where all of us would have headed in the first place, but for that totally misleading information on the Website! In any case, the letter did get the correct postmark, so I should get the $50 rebate, but from previous experience with rebates I am expecting to get a letter what I did wrong. I think the companies don't really want anyone to get these rebates, as they make you jump through so many hoops (it took us about an hour to print out the various things that were required, once we figured out what they were).

What was supposed to be a fried clam lunch became an early dinner, instead. We sat outside, because the inside of the restaurant was very hot, and they were mopping it with some kind of cleaning solution that smelled really awful, and luckily it was one of the few days that sitting outside was really pleasant, neither too hot nor too cold. When we were finished eating, I went to the ladies' room, and on the way back to our table I was really knocked out. I sat back in my chair and tried to catch my breath, which was difficult, as I was really gasping. For a minute, I thought we might need to call 911, and then I realized we couldn't do that, as we didn't have a copy of my Comfort Care DNR, which we have at home posted on the dining room door, just in case anyone should call 911 (we've instructed everyone that in an emergency they should call hospice and not 911). By law, the EMTs have to all lifesaving measures unless they are shown this form, which allows them to limit what they do to comfort measures only (like administering oxygen). So we decided that we needed to make a copy of it to take with us when we go out, in addition to the one we have posted at home.

I started to feel a little better, and we got Donna home and then back to our house without incident, although I was exhausted by the time we got home and just wanted to get into bed. I slept somewhat fitfully, and woke up feeling awful in an undefined way, and it's been a rough day ever since. I've been doing a lot of coughing that sets off a kind of vibration in my chest that is very uncomfortable, and I've had a lot of pains that come and go. Early this afternoon I drifted off and slept for about an hour, which helped a little. I'm going to bed in a little while and hope that I can get a good night's sleep and that tomorrow will be better.

Meanwhile, Marty spent the entire day at the mechanic (the car started, so he was driving there, but then it started dying, so he had to pull over and call AAA for a tow), where they diagnosed a problem with the alternator (which was Marty's diagnosis). Although I still think of it as new, because it is the first car I have ever bought new, it is a 2002 and I guess is reaching the age where it is going to start having some problems.

Saturday, August 29, 2009

I don't know why I'm so tired

For the last few weeks, I've been taking my blood pressure and oxygen saturation level every morning (which is transmitted over a phone line to one of the hospice nurses). My oxygen sat is usually in the 96-98 range, but this morning it was an alarming 89. I took it again and it was 93, better, but still low. I called and talked to Louise, who was on call, and a little while later another nurse (who I guess was checking the results I had transmitted) called--neither of them seemed particularly alarmed, so I guess it is all right. But I have been feeling very low energy and sleepy all day.

Meanwhile, Marty decided yesterday to go pick up Donna and bring her back here so they could do some more organizing around the house. On the way back, they first ran into heavy traffic because of the Ted Kennedy memorial that was taking place at the Kennedy library (which I was interested to note was being called a Celebration of Life, just like mine), and then started having car trouble, so it took them quite awhile to get back here. This morning, Marty was able to start the car, but it is still acting erratically, so he is planning to take it to the mechanic on Monday. I think we will be able to borrow one of Julie and Jim's cars if we want to go out to dinner later, and for Marty to be able to take Donna home tomorrow.

Today they are going through all kinds of stuff that has accumulated and trying to figure out what needs to be organized and what can just be thrown out. As is typical with such projects, right now it is creating a bigger mess, but the ultimate outcome should be that a lot of miscellaneous junk will get thrown out, and things that can be given away or donated will find new homes. Some months ago, I arranged that all my furniture and household goods (minus anything that particular people may want for themselves) will be donated to an organization that helps families who have been homeless and are setting up households.

Although I'm still feeling very low energy, I think we will try to go out to dinner, which should give me an emotional lift. It is another dreary day, with a hurricane off the coast. It was raining quite hard last night and has been raining intermittently all day. There has not been much sun all summer!

Thursday, August 27, 2009

Conserving and expending energy

It's been somewhat surprising how good I've been feeling since Thursday's big event. In the weeks leading up to it, I was being very careful about not using any excess energy, as I was determined to be strong enough to go to and to fully enjoy the event, and, in fact, I was feeling very good that day and it met or exceeded my expectations in every way.

Now I'm looking at energy expenditure somewhat differently. Marty and I still have lots of things we want to do, and I don't want to spend the next weeks or months just hanging around here in the house. We've begun to talk again about making the trip to New York; "Guys and Dolls" is long gone, but there's a revival of "West Side Story" which received excellent reviews. If we go to New York, we also plan to do some serious eating--we both want some real New York cheesecake, and Marty is longing for authentic corned beef. We'd love to go hear some good jazz as well. No doubt a trip like that would take a lot out of me, but it would be worth it.

I think we're also going to start looking seriously at the cultural events listings here in the Boston area. We were talking about going to the Hatch Shell concert yesterday (these are weekly events on the bank of the Charles River, where the big Fourth of July concert is held, but attracting much smaller and more manageable crowds). We went twice last summer and it was a lot of fun, but last night it was still hot and muggy--not good weather for me to be out. Overnight the temperature and humidity have dropped and we're in for at least a few days of nice weather.

I'm also trying to use my brain a little more--spurred on by good discussions we had yesterday with Marie, the hospice chaplain, and Katrina, the social worker, I've started working on a piece on the value of hospice care, which I'm going to submit to the New York Times op-ed page (if they reject it, I'll try the Boston Globe). I've been working on it since yesterday and hope to finish it tomorrow.

I have no idea how much time I have left, but I want to use it in positive and enjoyable ways. In one of the innumerable news stories I've read and listened to in the past two days about Senator Kennedy's death, it appears that he was quite aware he was living through his last few weeks of life and felt that he'd completed his work and was ready to go, and that the end came swiftly and peacefully. Of course, there's great irony in the fact that had he not gotten cancer he'd be leading the health care effort, and it most likely would be playing out very differently, but those are the things no one can control.

Monday, August 24, 2009

More about the celebration

I've had a few calls and e-mails from people who were worried about me since I hadn't posted anything for several days and they thought maybe the event had really wiped me out. Actually, I've been feeling pretty good until yesterday, when I was exhausted and never made it out of bed, and I've been busy and out of the house quite a bit. Now it's Monday morning and I feel like today will be a good day once again.

I started writing about the event on Friday but left it in draft form, so this morning I reviewed what I had written and posted it. To my surprise, it posted with Friday's date, as when I've posted drafts in the past they appeared with the current date, rather than the date I had written them. So if you've been checking back every day, you didn't miss anything; it's just a little blogspot mystery.

Getting back to the chronology of the celebration (as best I remember--I don't have a program in front of me), after Tina spoke we showed a video from Portugal, from the members of AEIPS, the Association for the Study of Psychosocial Integration. I have been to Portugal a number of times, and it was very moving to hear people talk about how my visits had given them hope and led them to become active in their own recovery. Jose Ornelas, the psychologist who started the organization, had met me many years ago when he was a graduate student at Harvard.

I had asked Tom Behrendt to speak about NARPA (the National Association for Rights Protection and Advocacy) ( but the night before he had e-mailed that he was on his way back from vacation and was stranded in Quebec with a broken-down car. That morning he had e-mailed that he might still make it, but he didn't, so I asked Ron Bassman to speak about NARPA instead. The annual NARPA conference has always been an important event in my life; attending one with me in Baltimore a few years ago was Marty's introduction to the movement. I have always said that NARPA is the place where I recharge my batteries for the year, the place where I no longer feel that I am swimming upstream, but instead am surrounded by people who share my beliefs.

I can't remember the order, but the remaining speakers were David Oaks and Sally Zinman, both on video, and maybe someone else that I'm leaving out. David had everyone laughing with his routine of searching for normality with a rubber chicken, and declaring, to everyone's great relief and much laughter, that there was definitely no normality to be found in the room! And Sally, who is fighting her own battle with cancer, and who just had a hip replaced, spoke movingly about the work we've done over many years.

We had had some discussion about an open mike, and Marty asked people who wanted to speak to come forward. A lot of people lined up and I was getting worried about the time that was left, so although all the comments were moving and heartfelt, and although there were still a lot of people who wanted to speak, I announced that it was my party and I was going to cut off the open mike because we wanted lots of time for people to mingle, and for the wonderful food to be served.

I had tried to imagine what Marty was going to say, and his remarks were beautiful and moving. One thing he said was so bittersweet--about how he had finally found the person he might possibly want to spend the rest of his life with, but he didn't mean it the way it has turned out. He quite publicly declared his love for me, words that we were reluctant to say in private for such a long time, but which we now say freely.

I really don't remember too much of what I said; I'm looking forward to seeing the video that Oryx Cohen made to jog my memory. I talked about all the support I have--from my family (I asked Julie, Jim, the kids, and Florence to wave to identify themselves), from my hospice staff (who called out from the back of the room that they were there), from my PCA's (who similarly waved), and most of all, from Marty.

Once I was finished speaking, the waiters started coming through with a selection of delicious treats. One of the reasons I wanted to hold the event at B.U. is that I know how good the food is from attending many receptions and similar events, and it did not disappoint. Someone brought me some wine, and I nibbled while getting a chance to have a few private moments with nearly everyone there. It was so wonderful that after all the planning and all the discussions and all the crises leading up to this moment, in the end it all came together so beautifully.

It took awhile after things ended to get everything packed up and ready to go, but eventually I got back in the scooter and headed to the lobby. On the way, I passed a table at which some of my friends, including Darby Penney, Laura Prescott, Chris Hansen, and Shery Mead were sitting, and I got a few more moments to meet with them, and to get some pictures taken.

Once we got home I was, of course, tired, and wanted to get into bed, but I wasn't as exhausted as I thought I might be. I had expected to be totally wiped out on Friday, but I felt surprisingly good, and on Friday evening we all went out for dinner, since Florence was leaving early the next morning. We went to a nearby Italian restaurant that's one of my favorites, and I was feeling so good about feeling good.

The good feelings continued through Saturday, when Marty and I went to a showing of a very interesting movie, "The Station Agent," being shown by the Cambridge Commission on Disabilities, where I had a chance to speak with several old friends who hadn't made it to the celebration, as well as watch the movie and participate in an interesting discussion of the disability issues it raised.

On the way home, we passed a restaurant that Marty had heard about on "The Phantom Gourmet," and he told me they were supposed to have the best hamburgers in Boston, so even though it was a little on the early side we decided to have dinner. The burgers were yummy, and we each had a beer. I was so surprised to be up and around when I was expecting to be exhausted.

But on Sunday morning, when I woke up, I really did feel exhausted. It was one of those morning when I just kept going back to sleep, and I slept on and off most of the day, and just felt lousy and weak. Happily, I woke up this morning feeling like it's going to be a good day, which is just about to get started.

Friday, August 21, 2009

It's hard to know where to begin

After all the planning, all the discussions, after so many sleepless nights for Marty as he obsessed over details, it all came together so beautifully yesterday. Marty and Jim left early to take care of getting things set up, bringing a lot of stuff with them, including the scooter and my lounge chair. There was one table which displayed the various awards and citations I've been given over the years--one of them, the Pike Prize, given by the Boston University Law School to a person who has advanced the rights of people with disabilities, is unbelievably heavy! So getting everything transported and set up was a big job.

Meanwhile, Julie and Florence were helping me to get ready. Julie worked on my hair, and I sat so I was able to do my makeup myself. Evelyn brushed my dress to get cat hair off it (everything in this house eventually picks up cat hair). Then Judy arrived to drive me. I filled up the portable oxygen machine from the big tank, and right away ran into a problem, as it is supposed to "pulse" oxygen in little puffs, and instead the oxygen was flowing freely. I called the oxygen company and talked to one of the technicians, who said that the machine had probably frozen up and they could swap it for another one, but weren't able to do it just then. I asked him if he thought it would last all afternoon and he said that it probably wouldn't (in the pulse mode it lasts six to seven hours), so I decided we should take the portable concentrator too, only I couldn't find it! Judy went searching around, and then I called Marty, who couldn't remember where he had put it. Since we still have the small oxygen tank we got from the fire company in North Attleborough the last time we had an oxygen emergency, I decided to take that as a backup. (Of course, this morning, with no more pressure on him, Marty found the portable concentrator pretty quickly.)

There was no traffic and we got to B.U. shortly before two, the scheduled start time. I called Marty to let him know we were (illegally) parked right outside the Sherman Union building, and in a few minutes Jim arrived pushing my scooter. I got in and rode into the building and up the elevator. There was a registration table, which friends of Marty's were staffing, where people could sign in and get their name tags, and in the room itself there were numerous round tables, as well as a few tables where food was laid out, and a bar with a bartender which had wine and soft drinks. Some people had already arrived, and more were coming in, and I buzzed around in the scooter for a few minutes greeting people, until I realized that I was tired. I am so glad that Julie decided we should have the lounge chair with us, as I definitely would have gotten exhausted sitting up for all those hours.

A lot is a blur, as there were so many people, including some whom I hadn't seen in many years. One of the first people I spotted as I came into the room was my dear friend Pat Risser, who lives in Ohio, and who decided just two days ago that he didn't want to miss it. He had called me the night before to let me know, so it wasn't a surprise to see him (his phone call was a surprise), but it was certainly wonderful to have him there. Pat and I have hung out together at many NARPA conferences, Alternatives conferences, and other places, and we consider ourselves to be brother and sister.

After I settled in my chair, lots of people came up to talk with me, and it was great to see people talking with one another and figuring out the various ways they were connected with me. I was also so happy that Donna was there, as she has done so much work on the event and has been such a great support for Marty. I talked, among others, with Dayna C., whom I probably haven't seen in at least fifteen years; Joanne S., who was a member of MPLF (the Mental Patients' Liberation Front) when I first moved to Boston in 1976, whom I probably haven't seen since some time in the '80's; and a number of other people, but my memory is a bit jumbled.

Marty and I discussed when we should start the formal program, wanting to make sure that most people had arrived, and I think we got started a bit before three. Marty made some opening remarks, and then introduced Dan Fisher on video. The night before I had watched Dan's video, which was too long, and decided that the last five minutes of it would do fine, so Marty had worked with the audio-visual guy to get it cued up (and to show David Oak's video, which had to be taken from You-Tube). While Dan's video was showing, I whispered to Marty that he had forgotten to read the citation we had gotten from the governor, so then he read that as well as the one from the Massachusetts House of Representatives.

The next speaker was Tina Minkowitz, who has spent the last few years working on the United Nations Convention on the Rights of People with Disabilities, and who spoke about the need for continued advocacy to see that this treaty (which has been signed by President Obama) is ratified by the Senate, and then implemented. If laws really are changed to bring them in line with the provisions of the convention, there would be no more involuntary commitment or forced drugging! Tina is also the co-chair of the World Association for Users and Survivors of Psychiatry (

Wednesday, August 19, 2009

The day before the big day

I'm continuing to feel remarkably strong and am hoping it lasts at least through tomorrow. Preparations are moving along and somehow everything is going to come together, although right now it seems that there are about a million loose ends. I'm, as always, out of the loop, sitting in my lounge chair and observing everyone else scurrying around. Marty, as always, has taken on way too much, and with his obsessive insistence on detail, everything seems to take a long time, but I know in the end that it will be done right because he is so careful.

To think that all of this came out of a chance remark of mine a few months ago that it would be nice to hold the funeral before I die rather than after! Now we have people traveling here from all across the country, plus all the people who I know will be there in spirit even though they're not physically present. We have a proclamation from the Governor and something similar from the State Legislature! We have so many people who have worked on some aspect of the event. I can hardly believe that, after all these preparations, tomorrow will actually happen.

Marty and Jim (my son-in-law) are planning to be at the Sherman Union early, to get things set up and (I am sure) make a lot of last minute decisions, make sure videos are cued up properly, etc. I'm going to be taken by Judy and Patti, since I want to conserve my energy and plan to be there shortly before two (the official start time). Julie had the excellent idea that, in addition to the scooter, which I need to get from the car to the ballroom (too far for me to walk), we also take my lounge chair, since sitting for a long time is tiring. It folds flat and is quite light, and I know I'll get less tired reclining.

Nancie was here earlier, so I had a lovely shower and my hair is freshly washed. Julie tried to find someone who could come to my house tomorrow to fix my hair and put on make-up, but, although she got several e-mails back when she posted it on the Arlington e-mail list, nothing worked out, but it's really not a problem. Julie is going to wet my hair and comb it through, and if I put some curling gel on it and crimp it with my fingers as it dries, it should look fine. I haven't put on makeup for months, because I'm not strong enough to stand at the bathroom mirror to apply it, but Julie gave me a small stand-up mirror which I can put on my bedside table, so I can sit and apply my makeup. I'm determined to look nice, even though I have chipmunk cheeks and a ruddy complexion from prednisone.

Patti has been here all afternoon, helping with various crises as they arose (for example, the video Dan Fisher made, which was sitting on top of the TV in my bedroom for weeks, and which all of us--me, Patti, and Marty--could remember him saying a few days ago, "I'm going to put this ---," only none of us could fill in the blank!). Once we found that, Marty was having technical difficulties with David Oaks's video, which had to be downloaded from the Web. One of Marty's friends has been to the printer to pick up the material for the program books, which still have to be put into binders (that will happen later this evening). But I feel confident that everything will come together in the end.

Another big change is that Donna is coming after all! Marty really wants her to help with set-up, and she was able to swap her work schedule with a co-worker so she will be off tomorrow and work on Saturday. Marty just left a few minutes ago to pick her up (and to get the stuff from the printer from his friend, who was too tightly scheduled to bring it here). So many details! With all the work she has done, I'm really happy that she's going to be able to be here on the big day!

If Marty and I can get a good night's sleep it will certainly be helpful. I've been sleeping well the past few nights--the increased dose of amitriptyline seems to have helped, plus I've started taking it a bit later in the evening. Marty has been coming to bed at a reasonable hour most nights, and although his mind has been racing with all the details he's trying to keep track of, he seems to be getting a fair amount of sleep as well.

Monday, August 17, 2009

The good days continue

I'm continuing to feel good and strong (of course, this is relative--strong for me means making it to the bathroom and back without feeling totally knocked out). I think it might be, in part, because of the ten day course of antibiotics I recently finished. As it's been explained to me, my lungs are a perfect breeding ground for infection, which I'm always carrying around some degree, and which occasionally get totally out of hand. But I'm not going to look too deeply into why I feel so good; I'm just going to enjoy it.

I was delighted this morning when I opened the Boston Globe and found that they'd published my letter at the very top of the Letters to the Editor column ( I'm really angry about the way the right wing has distorted a perfectly simple and reasonable provision to provide voluntary end of life counseling into the mythical "death panels." The whole subject of impending death is difficult enough for sick individuals and their families; often the subject remains the mythical elephant in the middle of the room that everyone ignores. But one result is that people end up getting treatments they don't want, which don't contribute to their quality of life, and they die in intensive care units surrounded by machines, instead of in the comfort of their homes (where, research shows, most people would choose to die).

We're down to the home stretch for Thursday. Marty, who has put unbelievable amounts of effort into every aspect of the event, is putting together a booklet of some of the amazing e-mails and letters I've received from people over the past few months. Sally Zinman and David Oaks are sending videos which we're going to screen at the event, and Tom Behrendt and Tina Minkowitz are going to speak in person. When I look over the list of people who will be coming, I see names of people whom I haven't seen in ten or more years! And the whole event will be videotaped.

I'm conserving my energy; I can't guarantee that I'll continue to feel like this, but I'm going to do everything I can to continue to feel good.

Sunday, August 16, 2009

Good days all in a row

This is now the third day in a row that I've been feeling really strong. On Thursday, every time I had to move anywhere I felt really knocked out, which is always scary and gets me thinking that I'm not going to regain my strength, so it's always reassuring when I bounce back from a bad period. I've been reluctant to test my strength, for example by going out, because I want to conserve all of my energy for Thursday, which I'm sure will be exhausting (although exhilarating).

Donna is here again for the weekend; she and Marty have been working together on getting a number of systems set up, such as checklists for my PCAs and a PCA logbook, as well as continuing to work on party stuff (this gathering will have the most extensively doublechecked and proofread set of name tags in history!). Friday night we ordered pizza, and last night we got takeout Chinese food (after I thought about the possibility of going out to eat).

When we had the big meeting with all the hospice staff and PCAs two weeks ago, one idea that came up was that I should be on daily home vital signs monitoring, so about a week ago one of the hospice nurses, Maureen, came with the equipment and taught Julie and me how to use it (Marty was out, so I showed him the procedures later). There is now a monitor that has been placed near my bed, with a digital readout that shows the time and date, and which goes on every day at ten thirty and announces, "It's time to check your vital signs." Then, following voice prompts, I have to put on the blood pressure cuff and the finger oxygen sensor, and someone has to push the start button (it's too far for me to reach). I can see the readout, and the machine transmits it over a phone line directly to Maureen's computer. The first two days she called me immediately after because she noticed some of the readings were high, but I explained on the first day that I had been having trouble getting the blood pressure cuff in place, and on the second that I had stood up to get the cuff right before taking the reading, both of which had raised my heart rate. Now I've been careful to get the stuff in place at least ten minutes before, to give my heart time to settle down. Because this reading is taken at ten thirty (a time I chose), and I need to have my meds and nebulizer treatment finished at least one hour earlier, this has imposed a time schedule on our mornings which we've had to rush a little to reach, since I have to eat before taking Celebrex. I suppose if we continue to feel rushed I can get the time changed, but it is good to have everything done by ten thirty, so I'd like to keep it as it is if it isn't too much of a burden for Marty (there was one night, I think Thursday, when he didn't get to sleep till after three, and I hated to wake him).

This morning we both slept late; after waking up some time after seven Marty put on the TV (his sleep aid) and we both drifted off again. The next time I looked at the clock it was a few minutes after nine! So I did my nebulizer treatment and I asked Marty to get me some crackers and water so I could take my pills while he prepared my actual breakfast, so I was able to beat the nine thirty deadline.

Julie left for New Jersey on Friday; I called her this morning about eleven and she and Florence were in the car and had already crossed the Tappan Zee Bridge into New York State. They are planning to stop for lunch at the place we always stop, Rein's Deli(, which is just past Hartford. They will be bringing me, at my request, one of my favorite things on their menu, orange glazed lemon cake, which looks very plain but is out of this world delicious. Once they are on the road again it's about an hour and a half until they get here, if traffic isn't a problem (which it shouldn't be). I can't wait to see them! And Evelyn is back from camp (Jim drove up to Maine yesterday to get her), although I haven't seen her yet. It will be great to have my whole family, little as it is, all together.

Friday, August 14, 2009

Good things

A number of good things have been happening the last few days. I had a good, sound night's sleep on Wednesday night (although last night's wasn't as good). I had a shower on Wednesday and my pedicure on Thursday. And although I was feeling quite weak yesterday, knocked out after every little effort, today I felt much stronger and better.

Yesterday Tim, my volunteer, was here for a few hours while Marty went out to do some errands. When he was on his way home, he called and said there was a beautiful rainbow that he thought would be visible from the living room windows, but when I couldn't see it, Tim and I went out to the front steps. At first we were looking in the wrong direction, but suddenly Tim said to look the other way and there it was. Seeing a rainbow is always such a wonderful experience, and we stared at this one for several minutes as it seemed to flicker--a light show in the sky.

Earlier, it was Judy (rather than Laurel) who took me for my pedicure, which was delightful. It was in a new salon that has opened only a few blocks away, run by a lovely woman from Brazil, while another Brazilian woman was the one who took care of me. It was so nice to soak my feet in warm, swirling water, and then to have my feet and toenails groomed, ending with a foot massage and then some bright pink/purple nail polish. I love the way they look, and it makes me feel so pampered.

This morning started out really well--Marty brought in the newspapers, and on the front page of the Boston Globe was a story about the outrageous claims by opponents of health care reforms about "death panels." I got really fired up, turned on the computer, and composed a letter to the editor. Getting my brain working and the endorphins flowing I think contributed to my good feelings and positive energy that has lasted all day.

Wednesday, August 12, 2009

What goes down must come up

Things were bad on Sunday, but they've improved and I've been feeling relatively good since. I guess I just have to allow myself some occasional attacks of the blues. It doesn't do any good to suppress my feelings, even the most negative ones; I think it's important to allow myself to feel whatever I'm feeling, which I think is the best way to bounce back from these episodes.

My biggest problem the last two nights has been sleeplessness. I usually take two amitriptyline in the evening to help me sleep, but I ran out of the medication the other day; and it has been working less well recently in any case. When Lauren was here on Monday we discussed increasing the dose from twenty to thirty milligrams, and I'm going to try the new dose tonight. Lauren and the hospice doctor suggested I try an antidepressant that is also used as a sleep aid, but after doing a bit of Web research I decided this was a drug I didn't want to take.

In addition, last night I had an arthritis flare-up, which doesn't happen very often; Celebrex has been a wonder drug for me, and these flare-ups are quite rare, and usually subside pretty quickly. But starting on Tuesday evening and all through the night I was aching all over--knees, elbows, wrists--which also made it hard to sleep. I think I finally fell asleep around three AM, and then had a series of bad dreams about being in various kinds of pain and discomfort, which I guess was a representation of what I was feeling. I'm hoping it's over--I'm not feeling any discomfort right now.

I've been a problematic sleeper most of my life; oddly, since I've been so sick I've been sleeping better, probably because I get so tired just from breathing. So I'm hoping that tonight, with the sleep deficit I've been building up, and the increased amitriptyline dose, I'll get some good, sound sleep.

Things are moving along with the celebration, which is now just eight days away. A bunch more people have RSVP'ed, and we're now well over a hundred attendees, including many people whom I haven't seen for ten years or more. It's been really great to see how many people that I've worked with over the years want to be a part of this. Marty has been working hard on lots of details, including name tags which identify people both by name and by their connection to me (since many people won't know one another, we thought this would be a good icebreaker).

Julie is driving to New Jersey on Friday, and will spend Friday and Saturday nights at Florence's house, and then drive back with her on Sunday. It will give Julie a mini-vacation, which I think will be a good thing for her. I am so excited about seeing Florence, who will be staying here for a week.

I'm expecting Nancie (as she's told me she spells her name), my home health aide, to be here soon; I'm looking forward to a shower and feeling clean. And tomorrow Laurel is taking me to get a pedicure.

Monday, August 10, 2009

A thoroughly miserable day

Most of the time, when people tell me how "brave" I'm being, my response is that while I certainly didn't choose to be in this predicament, at this point I have only two choices, I can choose to be miserable or I can choose not to be miserable, and I choose not to be miserable. But yesterday was one of those days when I felt totally miserable.

It all started when I got up to go to the bathroom, which is only a few steps away from my bedroom. Usually I can negotiate this without too much difficulty, but on Sunday morning it just knocked me out and I barely made it back to bed, gasping for breath. When I'm that weak, I can forestall the gasping if I remember to move in super slo-mo, but of course I don't realize I'm that weak my first time out of bed for the day.

As a result, I spent most of the day in bed, only venturing into the living room in the evening. I was feeling guilty for having Marty and others wait on me, and kept apologizing to him, to Julie, and to Florence (on the phone) for being such a burden and causing everyone so much trouble. I knew I was being a pill but was just feeling sorry for myself.

Probably the reason I was so tired is that Saturday was a busy and good day. In the morning, Julie took me to my hairdresser to have my hair cut. The same woman, JoAnne, has been cutting my hair for about four years, and she knows just how I like it. I hadn't been for a haircut in a long time and JoAnne commented on how long my hair had grown, and I told her to keep it long but to even it out and put lots of layers into it to encourage the natural curl. When I got home Marty was really pleased with how it looked joked that I shouldn't let my head touch the pillow for the next two weeks so it will look good for the party

Also on Saturday, Marty went to pick up his friend Donna and bring her here, with the purpose of them working together to reorganize a lot of things in the house to make it more convenient for all the changed circumstances--my needing a better set-up in the living room for my chair, and Marty needing things rearranged to meet his needs now that he's living here full time. Donna and Marty have been friends for many years and she's become a good friend of mine as well. I spent most of the rest of Saturday resting after my excursion, but in the evening I suggested we all go out to dinner (I had stayed dressed), and we went to a nearby Chinese restaurant.

Donna spent the night in the guestroom/office, where there is a day bed, and she and Marty worked all day Sunday, occasionally consulting me (for example, whether I would mind if they discarded by big office swivel chair, which is broken and therefore uncomfortable, which of course I didn't). I had called Judy to ask if she had time to spend with me on Sunday so Marty and Donna could work uninterrupted, but she wasn't available, and when she tried calling Diana, Patti, and Ann to see if any of them could come (in her new role as coordinator), she couldn't reach any of them. So I had to keep interrupting Marty when I needed anything, which contributed to my feelings of guilt and of being a burden.

Marty was concerned about needing to take Donna home, not wanting to leave me alone, but fortunately Caren called to ask if she could come spend some time with me, and I asked her if she could do it early in the evening, which worked out for her and solved the problem. I was beginning to feel a little stronger and asked Marty to get me settled in the living room before she came, so I got to see the results of the work he and Donna had done. They'd moved things around so that my chair, instead of being in the middle of everything, was arranged comfortably in a corner with a small table to one side, a lamp, and the rolling hospital table on the other side. I was very pleased with this arrangement, which also makes it easier for other people to sit with me, and not have to squeeze past me in the middle of the room.

I told Marty it would be all right if they left before Caren arrived, and she came shortly afterwards. We talked for awhile, and watched some of "Sixty Minutes," and by the time she was thinking about leaving Marty was back. I was feeling better than I had all day and told Marty that I was sorry about having been so difficult earlier, and he told me that no apologies were necessary and that he knew I wasn't creating problems on purpose.

Julie had been popping in and out all day, starting pretty early in the morning when I was feeling terrible. She made sure that I was taking the right medicines (starting with a nebulizer treatment and putting the bi-pap mask back on). She, Jim, Kyle, and Vivian were out for most of the day (Kyle had a Pokemon tournament and Viv and Jim went to a movie), but she called several times and came in again when they got back. She also got me a new computer, one of the tiny netbooks, but I'm not sure whether that's what I want so it's in the carton for now.

As often happens, late in the evening I was feeling better than I had all day, and we stayed up pretty late, and then I had trouble sleeping. But I feel pretty good right now--it's early morning. I'm just going to remember to go to the bathroom in slo-mo, just to be sure.

Friday, August 7, 2009

Getting everyone on the same page

Yesterday we had a big meeting with all my hospice staff (Lauren, Louise [the back-up nurse], Katrina, and Marie), plus Laurel and Ann [Judy was on vacation], and of course, Marty, Julie and Jim, and me. The idea was to make sure that everyone had the same information, knew what to look out for, when to call hospice, and were coordinating with each other. I was having one of those days when I was just feeling very tired, and I sat in my recliner, often with my eyes closed. Some people thought I was sleeping but I told them I was listening, and I am sure I was awake the whole time. It looks like we'll now have a schedule with someone here from about eleven in the morning till seven or so at night, every day, whether Marty is here or not. This should take some pressure off him as, even if he is here, there can be someone else taking care of getting me the things I need, and just generally keeping me company. There's also going to be a log book where people can leave notes for each other to make sure information gets shared.

At this point, I still feel that I can make most of my own decisions, but I know there are days that I can't (like the days when I had that fever); and in the future I'm sure I will need substituted decision-making more. The important thing is that people are carrying out my wishes for how I want things to be.

After that it was a pretty quiet day. I had called Lisa to reschedule my massage, because of the meeting, so she is going to come today instead. In the afternoon, I had visitors--Joe, Helen, and Cheryl, who are involved in the local self-help organization, and we talked for awhile, but I was getting tired and I think actually did start falling asleep, so they said they didn't want to tire me out, but it was nice having conversations that had nothing to do with sickness or "important" things--we talked about stuff like movies and TV shows we liked (and discovered a shared fondness for the old TV version of "Mission: Impossible"--not the movies).

Wednesday evening I surprised Marty by suggesting we go out to dinner. I hadn't been out of the house for two weeks, and after my shower I was feeling really good. We went to a nearby Greek restaurant where I had a dish I really love--lamb shank braised till it is falling off the bone. It was nice being out and I didn't even get that tired.

Tomorrow I will be going out again to the hair salon, and I need to find someplace to get a pedicure. The place I used to go may be closed (I tried calling and got a "this number is not in service" recording), so I will have to call around. I could go back to the place I went last time but I think I really prefer the whirlpool bath to having my feet just soaking in a big basin). It's funny that with all the "important" stuff going on, this is what's important to me right now. And anything that makes me feel good is something I should be doing.

Wednesday, August 5, 2009

Things are coming together

Julie, Jim, and the kids were in Texas all last week. They got back on Saturday, and then took Evelyn up to Maine, where she will be in camp for two weeks. On Monday and Tuesday, Julie spent a lot of time e-mailing and on the phone with the caterer, and it looks like the menu is pretty much finalized. The caterer had sent me some suggestions but I just felt too overwhelmed to deal with it, so I am so glad that Julie has taken on responsibility for this. Joan at B.U. has also been extremely helpful in getting various departments at B.U. coordinated (not just catering, but also buildings and grounds, and audio-visual). Since a lot of days recently my brain has just not felt engaged at all, it feels great to have so many people helping.

This morning I was coughing a lot, but it slowed down by mid-day. I spoke with Lauren, who spoke with the hospice doctor, and they are going to put me on a ten day course of antibiotics. I know from my past history that my lungs are breeding grounds for infection, which can cause a lot of coughing and make me feel weak. The aim, of course, is to make me feel more comfortable.

The new home health aide, Nancy, came today--she is definitely not allergic to cats but is, instead, a cat person herself. A few days ago I didn't feel strong enough to get into the shower, even with help, but today I decided that I was strong enough to try it, and a shower is definitely preferable to a bed bath (although I'm sure that in the future, if I'm feeling too weak for a shower, a bed bath will feel really good, too). Nancy didn't mind getting wet, and she helped to wash me, shampooed my hair, and then got it all combed. I have an appointment on Saturday to go to the hair salon to have my hair trimmed and layered, which will help it to curl more. I want it to look nice for the party.

Nancy will come for two hours once a week--in addition to bathing me, she can change linens, make the bed, do laundry, make my lunch, and similar chores. Lauren says that in the future I might need her more often, but for now once a week is fine.

Marty sent out another round of reminders and a lot more RSVP's are coming in. Last week, when I was feeling so sick and exhausted, I didn't know if I had the energy to go through with the party (even though other people are doing all the work), but now I am really beginning to look forward to it.

Tuesday, August 4, 2009

A little better, a little stronger

Today is the first day in quite awhile that I've been alone, and I'm managing all right. Marty had to go out to a doctor's appointment in the mid-morning, and Laurel was supposed to be here as soon as she finished with some appointments, but things must have taken longer than she expected. Marty has called to check in several times, and right now he's getting his hair cut before heading home.

I'm still having problems with coughing and irregular breathing. I called Lauren a few hours ago, and she suggested that I concentrate on trying to breathe slowly and deeply--in through the nose and out through the mouth, to try to bring the spasming under control. It's working to some extent, and I definitely feel less weak than I have been feeling for the past few days.

Things are coming together for the celebration--RSVP's continue to trickle in, and today Marty is sending out reminders. It looks like it will be a bit smaller than I first envisioned, but there will be lots of people there that I haven't seen in awhile and will bring together people from many different segments of my life.

I got a lot of sleep last night, but Marty didn't come to bed till very late. So when I woke up around seven, I was able to come into the living room, turn on the air conditioner, and get myself settled in my chair. Marty woke up around eight, very confused at not finding me in bed, but I wanted to make sure he got as much sleep as possible.

Although I feel somewhat tired and weak today, I am much stronger than I have been over the past few days. I've been able to go from the chair to the bathroom and back without feeling totally exhausted by the effort...these days, I guess that's about as good as it gets.

Monday, August 3, 2009

A bad day, then a better one

Yesterday I was so exhausted that I never really woke up until about two in the afternoon--I would be awake for awhile, and then drift off to sleep again. It was all because of these coughing fits, which are set off by exertion (sometimes just a tiny thing, such as sitting up) and make me feel like I am choking. It's a very different cough from the deep chest cough--this comes from much higher up in the chest and is like a spasm. Once it gets started it's very hard to stop, and it leaves me gasping for breath. I guess that's why I kept falling asleep.

I was on the phone with Lauren several times who has fiddled with my medicines trying to find some way to stop the coughing, and I think by this afternoon I am definitely coughing a lot less. In fact, by about three this afternoon I realized I was feeling markedly better. Part of it is probably the medicine, and another part is the treatment I got from Barbara in the early afternoon--whatever it is that she does it leaves me feeling very relaxed, and really mitigated the exhaustion I've been feeling.

Laurel was here a good part of the day, and she and Julie took a look at the stuff that I got from the caterer at Boston University, and started putting together various proposed menus at different price points. I knew the food at B.U. is expensive, but it's also good, and I want the event to be really nice. On the other hand, since it's an afternoon gathering, there really doesn't have to be a lot of food--I can't imagine people will be wanting a full meal at that hour.

Julie, Jim, and the kids got back from Texas late in the evening yesterday--Viv and Evelyn came down to ask if I was asleep (I wasn't) and they each gave me a big hug. This morning Julie and Jim took Evelyn up to camp in Maine for two weeks.

Right now I feel stronger than I've felt for several days, although the long-range trend is that I'm gradually growing weaker. But it definitely feels good to feel strong enough to walk to the bathroom without feeling like I've taken a major hike.

Lauren called this morning and said she has found an aide, Nancy, who is not allergic to cats, and who will come every Wednesday afternoon to bathe me. She said that the frequency could be increased if I need it more often. I'm not sure if I want to try taking a shower, with assistance, or whether it's better to be bathed in bed. And one way or another, I definitely need my hair washed.

Also, the vet, Dr. Leavy called, and wants to talk with Marty about managing Gilbert's heart disease. Since Marty will eventually be the person responsible for the cats, it makes sense for him to deal with her directly, rather than relaying messages through me. Right now, when I'm feeling a little stronger, I feel like my mind is working again, but this morning I felt confused and unable to think clearly.

This morning when Marty was getting me my breakfast I said I'd give anything if I never needed to have breakfast in bed ever again!

Saturday, August 1, 2009

Slowly getting weaker

Yesterday I spent most of the day in my recliner, sort of watching TV but mostly dozing. Ann was with me all day as Marty had a number of errands to run, including finally getting grocery shopping done which he's been trying to do all week. The weather has turned hot and muggy (yesterday it rained hard a good part of the day and it's less muggy today, but still hot), so I'm very grateful for the air conditioning--without it I'd have real trouble breathing.

In the morning I took a stab at the Times crossword puzzle, but didn't get very far (the Friday and Saturday puzzles are the hardest of the week), but I kept going back to it during the day and each time was able to fill in a little more, and by evening I had completed it. It's very strange that you can find yourself completely stuck, but when you pick it up an hour or two later there is often something new you can fill in. So I guess later I will try today's. Marty is out again all day today to be with Donna--today's the day her brother's ashes are being scattered at sea down near Plymouth. Ann is with me all day today as well. Yesterday she finally got the sweaty sheets off the bed that I'd been wanting to be changed all week (Laurel couldn't do it because of her wrist, and it's too much for Marty--I had been expecting Susan to do it, but she never showed up). Ann took the sheets, the duvet cover, the pillow cases and shams and got them all washed and the bed freshly made up, and it felt so different and so good!

On Thursday hospice sent over a home health aide (I forget her name) who was supposed to give me a bed bath and change the sheets, but when she got here and discovered I had cats she said that she was very allergic. She didn't want to touch my bed and gave me a sponge bath in the bathroom, and brushed and combed my hair till all the tangles were out. Lauren is working on getting me another aide, who will come weekly to bathe me and change the sheets (and who won't be allergic to cats).

Right now my worst symptom is coughing (again). It really tires me out. The new medicine doesn't seem to be helping and I've been coughing up blood-tinged gunk all day. I just took some cough medicine and if it doesn't stop soon I will call hospice and talk with whomever's on call. These coughing fits start everything vibrating inside my chest and make me feel incredibly weak.

Late in the morning Caren stopped by and she, Ann, and I chatted for awhile. I asked her to work with Ann to fold the sheets (I have king size sheets which are hard for one person to manage), so now those are put away. Caren said she'd check with Marty to see how things are going with keeping track of the people who have replied that they are coming. I think this week we will send out reminder invitations and encourage people to let us know that they're coming, as we need an accurate count.

My stomach is pretty much back to normal and I'm eating a wide variety of foods again. Karen brought me some muffins from Quabrada Bakery (she knows how much I like them), and for lunch I had Ann go out to a nearby Italian place for one of my favorite sandwiches--grilled chicken, pesto, fresh mozzarella, and tomatoes.

I napped a bit during the morning and will probably sleep again during the afternoon. I have no energy at all.