Life as a Hospice Patient

Two things

2010-01-19T19:21:00.003-05:00

Folks -

A couple things:

First, I'm told that the article about Judi in the Boston Globe will appear tomorrow, Wednesday [sorry to those who scoured today's paper as I did!] Thre is already something on the Globe's web site written by Kay Lazar who wrote the article last year about Judi's struggle with her insurance company. That article can be found in the White Coat Notes column at http://www.boston.com/news/health/blog/2010/01/patients_rights_1.html.

Some of Judi's wonderful colleagues have, with remarkable speed, created the Virtual Memorial web site I had hoped to create. Consequently, I'm urging everyone to go to Judi's new site at http://judi-chamberlin.virtual-memorials.com/ to leave comments, thoughts and memories. I'll keep this blog active for a while, but the central place for everything "Judi" will now be the Virtual Memorials site.

I want once more to thank everyone who has added to the phenomenal outpouring of affection here on the blog. Judi was, and would be moved.

Piece about Judi on NPR's Morning Edition tomorrow

2010-01-18T14:56:00.003-05:00

I just got off the phone with Joe Shapiro from NPR who is doing a piece about Judi tomorrow [Tuesday] morning .

I'll update this if I get any more information, but I wanted to get this out immediately. As it stands now, Joe thinks it will air on Morning Edition tomorrow at 6:25 a.m and again at 8:25 a.m.

Marty

Thank you for your heartfelt comments

2010-01-18T12:29:00.002-05:00

Dear Friends and Followers,

I can't begin to tell you how much I appreciate all the wonderful comments that have been psoted over the last day or so.

I am keeping the blog up in order for people to continue to share their thoughts and memories of Judi. I also hope to be able to be in touch directly with those of you who I know were close to Judi.

As more than one of you have pointed out, fame and honors were not what motivated Judi to do the work she did, but I know that she would have been gratified to hear what you have to say about her. Thank you.

Marty

2010-01-17T18:08:00.002-05:00

Dear followers of Judi’s blog,

With deep sadness we want to let you know that Judi died late last night [Saturday]. After an uncomfortable day – her breathing was unusually labored for much of the day – she finally relaxed for a while. Around 10:00 Marty, who had been sitting with her for some hours, tried to give her some medication and realized that she had passed away.

If you’re reading this you’ve obviously been keeping up with the blog and know the wonderful, sometimes heroic way in which, like much of her life, Judi faced the inevitability of her own death. We know that so many of you loved Judi and will miss her.

In keeping with her wishes and instructions, Judi’s body will be cremated in the next few days and we will decide later what will happen to her ashes.

Judi’s blog will be kept active for the time being so please feel free to post comments that you might like to share with the rest of us “followers.” Also, before she died Judi indicated that she didn’t want people sending flowers, and we want to honor that. If you want to mark Judi’s memory in some tangible way, it was her wish that contributions be made to either:

The National Coalition of Mental Health Consumer/Survivor Organizations
Checks can be made out to
NEC [National Empowerment Center]
Note on the check that it is “for NCMHCSO in honor of Judi Chamberlin. Checks can be mailed to:
National Empowerment Center
599 Canal Street
Lawrence, MA 01840
or
Visiting Nurse and Community Health
Checks can be made out to VNCH. Note on the check that it is for “Hospice in honor of Judi Chamberlin” and can be mailed to:
Visiting Nurse and Community Health
Donations
37 Broadway, 2nd Floor
Arlington, MA 02474
Or on line at: http://thevisitingnurses.com/Charitable_Giving.htm

Julie and Marty

A minor scare

2010-01-12T17:21:00.002-05:00

When I first woke up this morning, I came sort of half-awake and my chest felt very cold. I reached for a blanket and wrapped it around my chest, which felt both cold and hollow--a hard to describe feeling, but one I associate with having pneumonia. I think I then fell back to sleep, woke again at eight and put on "The West Wing" (which we watch two episodes of every morning from eight to ten), but then I guess mostly slept through it, as I remember very little. Marty said that at one point he peeked in at me and I was definitely asleep.

I wanted to eat something so I could take my meds, but wasn't particularly hungry, so I had a few crackers with peanut butter. Marty had a doctor's appointment, but said he was going to call to break it because we didn't have PCA coverage (Lauren has been changing Nancie's hours, and he made the appointment based on the old schedule). I really wanted him to keep it, because he's been sick, so he called around and found that Patti was available to come until Nancie could get here, so that worked out well. Later Ann came, and then Judy stopped in for a little while, just for a visit, so it's been nice to have a parade of friendly faces.

In addition, I think the feeling that I had pneumonia was a product of a half-awake state. I'm no weaker than I was yesterday (weakness is a main symptom), nor do I have a fever. I am quite sleepy, but haven't been able to nap. Marty should be home soon, and he said he is bringing me all kinds of goodies from the Jewish deli and grocery store in Brookline, which is right near the hospital. I'm glad I have my appetite back! I've eaten soup and ice cream and cookies, and I'm eager to see what he's bringing me for dinner.

A calm and peaceful weekend

2010-01-11T16:36:00.002-05:00

Saturday and Sunday went pretty well. My appetite is coming back and I've been strong enough to go back and forth from the living room to the bathroom (I've continued to sleep in the living room). The main difficulty right now is that Marty has a terrible head cold. He feels awful and is trying to rest as much as possible, and is also making every effort not to pass his cold on to me, which would be disastrous.

Yesterday afternoon we settled in to watch the Patriots play the Ravens, after watching the Jets beat Cincinnati on Saturday (with the Giants out of the picture, we've switched our allegiance to New York's other team). To our complete shock, Baltimore ran completely over the Pats, running back the opening kickoff for a touchdown and never letting down from that point. The final score was Baltimore 33, New England 14, so there will be no more Pats games, and I'm not sure if we will sustain any enthusiasm for the Jets. But it was nice to sit and watch the game together and enjoy each other's company. On Saturday, Marty was gone for most of the day helping Donna, who's having car trouble again and needed groceries, and when he came home he was exhausted. I keep reminding him that after a bad cold or flu the body has no reserves, and when you get tired you just have to stop right away.

Aside from feeling just slightly weaker, I'm feeling all right. My mood is good; once I start functioning on an intellectual level again, I feel like there's a reason to go on existing, but when I feel as awful as I did last week, I really long for the promised coma in which I will feel no pain. I don't see any point in living just to feel pain and suffering--that's where I draw my "quality of life" line, although I know different people will draw theirs at different points. In some religions, I know, pain and suffering have value and meaning in themselves (one of many reasons why I don't have much interest in religion). But now I still see things I can do both in support of hospice/end of life issues, as well as in the psychiatric survivor movement. And to me, work gives meaning to life.

Two very bad days

2010-01-09T08:11:00.004-05:00

Wednesday and Thursday were nightmarish, each in its own way. All day on Wednesday I kept having very clear visual hallucinations, and had to keep doing reality checks. For example, Nancie was sitting on the couch, near my recliner, and then I "saw" her get up, walk across the room, and adjust the thermostat. Then I would open my eyes, see her on the couch, and ask her if she had just been at the thermostat, and she said no. Or another time I asked her if she had been covering her eyes with her arms--also no. I "saw" Marty standing next to me while he was in the next room--simple stuff like that. The hallucinations themselves weren't scary, but the fact that I kept having them was. It was probably a little too much morphine--I am very sensitive to painkillers (and mind-altering drugs in general). For example. Valium, which makes most people pleasantly drowsy, makes me cry uncontrollably. This is called a paradoxical effect, and I have frequently needed to persuade doctors to prescribe a different drug when they wanted to use Valium (for minor surgical procedures, for example). I also react very badly to Novocaine, and until I found a dentist who used gas preferred getting my fillings done without any anesthesia rather than go another round with Novocaine (which makes me go totally bananas--to use the technical term).

I called Lauren several times--she is so calming and helpful, even over the phone, and she told me not to take any more morphine, use some of the ABHR gel, and call her back in an hour or two. She consulted with the hospice doctor, who prescribed a small dose of Haldol, but that is a drug I don't want to take (although she explained that they prescribe it as a small fraction of what is used for psychosis). But the hallucinations lasted only that day. I've had visual hallucinations before, always related to prescribed drugs (except once when I was in a half-awake state, which my wonderful therapist assured me is a time when the brain is in an abnormal state). Probably the strangest hallucination I ever had was about thirty years ago when I was in the hospital after severely straining my back, and was in traction and on painkillers, so was completely immobilized and totally dependent on nurses. I particularly liked one particular (male) nurse, so it wasn't surprising when I "saw" him walk into the room and stand by the side of my bed, but then it got a little strange when he stood up on the bed, straddling me by putting one foot on each side of the bed frame, and than began pulling tiles off the ceiling! At that point, I finally realized that it wasn't happening!

Thursday the problem was totally different. I didn't take any morphine and the hallucinations stopped by themselves. But when I got up to go to the bathroom in the morning (having slept in the recliner), I sat on the toilet for about ten minutes, gasping and wondering how I was ever going back to the living room, and eventually deciding that I'd go to bed instead, since that's only a few steps. Even then, I was gasping and couldn't catch my breath, and just felt horrible in every way. I called Lauren, semi-hysterical, saying "hospice promises that you will not suffer, and I am suffering." Again, her wonderful, calming reassurance overcame my hysteria, and she instructed me on a schedule of taking various drugs and calling her to report on how I was feeling.

At some point, and we don't know when it happened, Marty discovered that my oxygen hose was disconnected! Obviously, without supplemental oxygen, I'm going to feel really badly, but even after he reconnected the tubing, and I did restorative breathing ("in through the nose, out through the mouth," as slowly as possible). Nancie is particularly good at giving me verbal cues when I start gasping. Having her here two hours Monday through Friday has worked out really well, as she is both excellent at the technical aspects of the job, like bathing me, but we have also developed a real rapport, so I just enjoy her company. She, like Lauren, is very good at calming me down. She also really enjoys my cats, and of course it makes me feel good when anyone loves my wonderful Oliver and Gilbert.

I didn't eat at all on Wednesday or Thursday. I stayed in bed all day on Thursday, feeling far too weak to make it back to the living room. I was thirsty (my drink of choice these days is ginger ale), but not at all hungry, and I was so exhausted that I fell asleep early in the evening. Marty asked me if he should wake me for "Jeopardy!" (which comes on at 7:30), and I told him to try. I was actually able to stay awake for the half hour (and even answer the questions coherently), but shortly after that I fell asleep for the night and slept until well after six--about ten hours of sleep! I woke up several times during the night--I had severe post-nasal drip and kept waking up to cough), and I was lying on my hip, which started to hurt. I hadn't taken Celebrex (or any of my meds) and decided that I would eat some crackers in the morning so I could take a dose (which needs to be taken with food). About noon, Nancie heated up some canned macaroni and bean soup, and during the afternoon Ann made some vegetable and barley soup from a package, and I ate quite a bit of that, which tasted so good. These days, soup seems to be my basic food.

In addition, Marty has come down with a really bad head cold, so he feels awful, plus he's concerned that he avoid contact with me as much as possible. He slept on the daybed in the office on Thursday night to protect me, and he's been using hand sanitizer any time he needs to touch something that I will touch. So far, so good, but it's really hard to see him so sick and still needing to take care of me.

Fortunately, when I woke up on Friday, I could feel right away that I was doing much better. I was able to get up and go to the bathroom and back without assistance, and once I did my monitoring (the machine goes on at 10:30), I was able to go back in the living room, where I am always much more comfortable. Lying in bed to sleep is fine, but sitting up is never really comfortable--I start out in a sitting position, propped up with pillows against my bedrest, but I am constantly sliding down and needing to be pulled up, whereas in the chair I am cradled in a comfortable position that supports my whole body.

After sleeping for ten hours the night before, I wasn't expecting to get much sleep last night, but I did get a few hours, and I feel well rested and very hungry. I'm hoping Marty gets up soon, but I want him to get all the sleep he needs--he was so exhausted last night, but I'm hoping sleep will be restorative.

Last weekend, there was a minor "tragedy" when I discovered my Itty Bitty Booklight was broken in a way that was not fixable, so I went onto the Web and searched for a replacement. The original (the "Itty Bitty" is actually a trademark) was surprisingly expensive, but I found a substitute which was only $15 including shipping, and it arrived yesterday. It's a beautiful bright purple, and much sturdier than the old one, which I got years ago as the "free gift" for joining a book club (if it's a gift, by definition it's free), so I certainly got my money's worth.

A scary moment

2010-01-05T21:49:00.002-05:00

I decided to sleep in the recliner again last night. I was very drowsy and had been drifting in and out of sleep for an hour or two, so around ten Marty set me up with the stuff I need and shut out the lights, and said that he would be going to bed soon himself. I was drifting off comfortably when suddenly I heard a crash. I had no idea what it was, but I was scared and kept calling out Marty's name, getting even more scared when he didn't answer. I wasn't sure what to do, but I finally got up out of the sleeping bag and got my walker. He wasn't in the office, so I headed toward the bedroom, where I found him half asleep sitting up in bed, not sure of what had fallen. I was just relieved that he was okay, but it took a long while for me catch my breath, which was extremely unpleasant.

After that, it took several hours for me to calm down enough to get to sleep, although I finally was able to sleep soundly. Today has been a day when I've had lot of trouble breathing, so I have been drifting off quite easily all day, and I hope I will slip into an easy sleep tonight. I've talked with Lauren several times, who directed me to take various medications on a schedule, and report back to her. I continue to be quite short of breath--I guess it will be important to see how I feel in the morning.

I'm back to feeling that there's not much use to living like this. Maybe tomorrow I can try to put together something for the New York Times, to show myself, once again, that my brain still works.

The importance of sleep

2010-01-04T17:05:00.002-05:00

Marty and I had a nice New Year's Eve--we drank some champagne, wore (briefly) some funny paper hats, and watched some old movies on TV (before switching shortly before midnight to the Times Square ball drop). So we were late getting ready for bed, and, as often happens, when I start too late I have trouble sleeping. My usual sleeping position is on my side, but rolled beyond my hip (a very comfortable position I was taught at a pain clinic when I was having severe hip pain and couldn't lie on it). As my breathing has become worse, it's been suggested many times that I sleep on my back with my head elevated, but I've never been able to sleep on my back, so I've found a compromise position, on my side, but with my head and shoulder elevated with pillows draped on my bed backrest. But that night I discovered I really needed to be on my back, so I tried to sleep that way but kept slipping down, and I decided that if I was going to sleep on my back I would need to do it on my recliner.

I tried that for the first time the next night, and although I was pretty comfortable, I couldn't get over the hump and into deep sleep, until about four A.M. But the next two nights have worked fine--I slept soundly and quite comfortably, although last night I found myself trying to turn over onto my side, which made the recliner move, waking me up! So I think I may try sleeping in bed again tonight. Both Marty and I feel like we're very far apart, although I can always call him if I need him.

Sleep is so necessary...as I become weaker, I find myself drifting off to sleep often during the day. Sometimes it's a funny kind of half-sleep where I'm aware of things going on around me but can't respond; other times it's really deep (like times when I don't hear the phone ring). It's so important for me to sleep as much as I can, as I need as much energy as possible. I think that sometimes when I'm having trouble with incontinence (as I did much of this weekend) or loss of appetite, it's because I'm in a half awake state without realizing it.

This morning I went back to bed after a bathroom trip (the bedroom is a lot closer to the bathroom than the living room is); but I needed to sit in the bathroom for maybe ten minutes before catching my breath and getting up even the energy to make that very small move. I stayed in bed for a few hours and took a little nap, but in the afternoon I moved back to the living room, where I am definitely more comfortable. Such is the minutiae which makes up my day!

The importance of sleep

2010-01-04T17:05:00.000-05:00

Promoting wider dialogue on death and dying

2010-01-02T17:06:00.002-05:00

There's been an interesting discussion on the "Comments" section of this blog under the heading "Responding to Comments by Anonymous" (December 24), which I would very much like to expand, not just to additional readers of this blog, but also beyond it. I'm thinking of several possibilities, including setting up a new blog, in which several of us would take the lead role, or finding another blog on this topic to which we could become contributors.

There's a very interesting set of letters in today's New York Times on this issue; I did note that, of the seven letters only one is not by a medical professional (it's by the parent of an infant who died--the parent had to switch hospitals in order to get wanted hospice care for a dying, suffering infant); none is by a hospice patient. This, of course, has always been my frustration in my work in the psychiatric survivor movement--that others have always assumed the right to speak "for" us. For hospice patients, the reasons are somewhat different, but the fact remains that the voice of the hospice patient is not being heard. I think I'm in an excellent position to be such a voice (although I hope not the only one), for several reasons: I came into hospice rather early in the dying process; the course of my illness continues to be atypical, leading to my prolonged longevity in the program; and my past career is as an educator/advocate.

Another of the Times letters is by the wonderful doctor, Lochlan Forrow, who is the palliative care specialist at Beth Israel Deaconess Medical Center in Boston (among his many roles), who is the doctor I met with in October, 2008 when I first asked to talk to someone in palliative care. His main point, that a doctor quoted in the original article, commits an unethical act when he promises people that they will not die if they come to his hospital, both because no one can prevent all deaths, of course, but also, and more importantly, because such a statement totally closes off any possible discussions of options and choices for severely ill people.

I'm planning to submit an op-ed article to the Times, first making the point that the hospice patient voice needs to be part of the discussion, and then raising the issues we have been discussing here, but I think the Times may well not want to publish much more on this question for now. So I'm asking all of you to think about the best way to proceed from here. I definitely want to continue this blog, focusing mainly on my own condition and experiences, but I do think there is a place for this wider discussion to take place.

Regaining strength

2009-12-30T21:46:00.003-05:00

It's been good to realize that I'm a little bit stronger than yesterday, that I haven't permanently lost some capabilities. Most importantly, I didn't need Marty's help today getting up from the toilet, which is a great relief as it is hard for him to do. I'm still going to pursue getting a toilet surround, since undoubtedly I will need that support at some point.

Today has been a pretty good one, which I've spent mainly in the living room. Marty's plan was to take Donna home today, with Ann scheduled to stay until two-thirty, when Nancy was due, so it presented a problem when Nancy called shortly before her scheduled arrival to say she needed to take her daughter to the doctor. I called Marty, who was at Donna's house, and then called Judy, who fortunately was able to come for the afternoon.

She told me she would need to be gone for about forty-five minutes to pick up her daughter from somewhere and deliver her somewhere else, and I felt confident about staying alone for that period of time, and with the computer and the newspapers it went by pretty fast. Marty kept me posted on his progress--first he and Donna needed to get something to eat, and then get her some groceries, before he headed home.

Tomorrow is New Year's Eve--I asked Marty to buy some of the curly streamers that you throw and they uncurl (I just Googled them and discovered that they are called "serpentines"), and I'm sure we have another bottle of champagne--I'm just glad that I feel so much better than I did over the weekend, when I wouldn't have been in the mood to celebrate anything.

I suppose I should be celebrating getting through 2009, although I'm not so sure that's anything to celebrate. I guess it's good to look back on the good things that have happened this year, especially my Celebration of Life, and all the love and support I have been getting from so many people all over the world. Just yesterday I got a phone call from someone who said I probably didn't remember her, but she had met me some years ago and she wanted me to know what a positive influence I'd had on her life, as well as an e-mail from someone I met in Vancouver about ten years ago with a copy of an interview she'd done with me then and has just published in a consumer/survivor magazine (http:/wcmhn.org/bulletin_files/Bulletin-Winter-09a.pdf). It's things like this that continue to remind me of the good my work has done, and that I'm still able to do useful things even as I can no longer physically manage to do very much at all.

I have no idea what 2010 will bring--of course, no one does, but living with the daily knowledge of my own mortality makes me even more aware of the little things (like the yummy dish of spaghetti with garlicy olive oil and parmesan cheese that Marty just brought me).

Navigating the Medicare drug benefit

2009-12-29T21:13:00.002-05:00

For months, I've had the December 31st sign-up deadline for the Medicare drug benefit (Part D) hanging over my head. It has deliberately been designed to be complicated; the logical way to do it would have been to make it a Medicare program, but in the Bush era this was considered to be the dreaded "socialized medicine," so it had to be written to the benefit of insurance companies, each of which created its own rules of which drugs to cover, how much to charge for premiums, and numerous other variables. The law also prevented the government from negotiating lower drug costs, which of course was a windfall to the drug companies. Because the process is so complicated, I just couldn't deal with it, and so I just let the time slip by until it became something I couldn't avoid. And if I, a reasonably intelligent, educated, and aware person, finds all this hard to navigate, I would imagine there are many others who find it totally overwhelming.

Fortunately, Nancy, the hospice social worker, referred me to a local non-profit agency that does nothing but Part D counseling. Their representative called me this morning, took my information, did the comparisons, and found the plan that she is sure offers the best combination of premiums and co-pays to meet my needs. My situation is relatively simple, because hospice pays for all my drugs except Celebrex; for people who need coverage for multiple drugs face far more complexity, as different programs cover different drugs (and, of course, no one can predict what drugs they may need in the coming year). Obviously, all this could have been avoided by making it a single payer program, like the original Medicare program, but the Bush administration was far more interested in funneling money to drug and insurance companies than to helping elders with what became an ever-growing expense. The Republican congress that passed the benefit did not provide any funding, which vastly increased the size of the deficit (and making hollow Republican opposition to the current health care reform legislation, which does provide payment mechanisms). In order to hold down costs, which could have been done by negotiating drug prices or placing limits on insurer profits (ideologically unacceptable), Congress created the hated "doughnut hole"; a process by which the individual, after accruing a set amount of benefits, has to pay full price until another threshhold is reached, at which point the benefit kicks in again.

After a few phone calls back and forth I was given a phone number and was able to enroll over the phone. So something that has been nagging at me for months is now taken care of. It just shouldn't be this hard!

Was it hell...or just the flu?

2009-12-29T17:17:00.003-05:00

Saturday, Sunday, and Monday were three of the most horrendous days I've had in quite a long time. Maybe it's fortunate that I don't remember a whole lot of it. In fact, I lost a whole day--when I woke up yesterday morning, thinking it was Sunday, I asked Marty if it was "Will time"...our Sunday morning ritual of listening to Will Shortz, the puzzle master, on NPR, and he said "wrong day." "Isn't it Sunday?" I asked, and was amazed to find out that it was Monday!

I spent three days aching all over, feeling miserable and totally irrational. Marty says that when I get into one of these states I yell at him, which makes me feel bad, except that he doesn't seem to take it personally and understands that it's one of the ways feeling really awful makes me behave. Several phone conversations with Lauren were quite helpful for both of us, but at one point it was two A.M. and I kept insisting that he had to call Lauren, even though he knew she was just going to repeat what she'd already told him and which I was resisting (I think it was to take morphine and maybe some other drug); it's a tribute to Lauren's dedication that even in the middle of the night she was quite able to deal with the situation and tell me what to do (which was, of course, what Marty was already telling me).

Lauren's theory that I had the flu seems to be a good explanation of my symptoms. I didn't take my temperature, but I felt feverish, and the all over achiness is definitely flu-like. Although I've had an annual flu shot every year since the early '80's, I've come down with the flu a few times (the shot doesn't protect against every strain), and it is always hard for me to believe in the middle of it that it is a "minor" illness. I remember once, also in the '80's, thinking "the doctor says I have the flu, but he's wrong, because obviously I'm dying." Another time, back in the mid-70's, when I was living in a communal house in Vancouver, a 24 hour flu swept through the house, taking us one at a time. I was the last, and I remember lying on the bathroom floor, thinking there was no point in dragging myself out of there because I was just going to need to go back and throw up some more!

For the past three days I stopped eating completely, after finally getting my appetite back and having several dinners of turkey, stuffing, gravy, and veggies (from the prepared food counter at the supermarket), followed by a lovely Christmas Day dinner of roast leg of lamb. So until today, when I had some delicious mushroom and barley soup that Marty made at my request, I hadn't eaten at all since Friday. I had a constant craving for ginger ale, so I wasn't getting dehydrated, and Lauren always reminds me that I don't need to eat unless I feel hungry. I'm actually looking forward to having some more soup in a little while, but I have no interest in any other food right now.

In my semi-delirious state these past three days, I kept wondering if this was the beginning of the end, and found myself craving the peaceful state that could then slide easily into a coma, but it didn't happen. I just don't understand why I have to suffer so much, but at least I'm not in constant pain, which would be far worse. I have been getting awful headaches on an almost daily basis--the last one was last night in the middle of the night when I had to wake Marty because I needed ginger ale and tylenol. I felt bad about waking him, but he is just so good about it, and with a dose of morphine as well the headache was entirely gone in about half an hour. It is so frustrating that something as simple as getting a can of ginger ale out of the refrigerator is beyond my capabilities!

We did manage to have a nice Christmas day. Donna is still here (Marty will be taking her home tomorrow--the combination of last week's snowstorm and getting enough coverage for him to be able to be away for four hours or so has kept her here far longer than she had planned). Christmas is a big deal for Donna, so she was making all kinds of goodies which I was able to enjoy (this was before I got so sick), and we managed to be rather festive. Marty came home with the world's smallest Christmas tree (a tiny potted evergreen complete with lights), and we toasted one another with champagne. And on Christmas eve we did the "traditional Jewish Christmas"--at least the Chinese food part (we skipped the movie).

Although I feel so much better today, I seem to have become even weaker. This morning I got out of bed for the first time in three days, went to the bathroom, and discovered I needed Marty's assistance to rise from the toilet. Until now I've been able to use the edge of the sink to push myself up on one side, but now I need something on the other side as well. Tomorrow I will ask Lauren if hospice can supply a toilet surround, which is positioned around the toilet and provides something to push against, which will certainly be a lot easier on Marty. Every time I've asked hospice for a piece of medical equipment it's usually arrived the next day, so I'm sure this won't be a problem.

I'm hoping I can get back to my "normal" state, starting with a full night's sleep tonight. When I was feeling so sick, I wasn't reading, wasn't watching TV, I was just lying with my eyes closed, drifting in and out of sleep. I did start reading the paper again yesterday, and doing crossword puzzles, things I still get enjoyment from. And through it all, Marty and I are still able to laugh.

Responding to comments by "Anonymous"

2009-12-24T15:50:00.004-05:00

Thank you for your very thoughtful comments. Although I've never been a teacher in a formal way, teaching in various formats has always been a big part of what I do, and it's something I love. Stimulating people to think, and helping them to articulate what they may not have had an opportunity to put into words, is extremely satisfying.

The subject of death and dying is hard to get people to talk about thoughtfully, because it is so emotionally fraught and so easy to manipulate, as was illustrated this summer by the "death panel" debacle. It is extremely difficult to raise questions about end of life care, because no one wants to think about the fact that, at some level, care will have to rationed. There is simply not enough money to provide every possible treatment for every person with every illness (even leaving aside the fact that many of these treatments are futile, cause pain and suffering, and only prolong the dying process). And we do, in fact, have rationing now, rationing by price, which is perhaps the least rational way of determining care.

Hospice is, I think, a way of trying to step outside the mainstream and help people to think about death and dying in a different way. Too many people think that to talk of dying is "giving up," that it means a lack of caring, and that anything less than providing every possible treatment constitutes neglect. High tech medical care can be a great thing, when it enables seriously ill people to regain meaningful life, but it can also be a trap, leaving people to die a lingering death in an intensive care unit. I, personally, can't imagine a worse way to die--in a room where the lights are always on, where there are the constant sounds of machines, where peace and comfort can be hard to find. This doesn't mean I think ICUs are not good things. They can save people's lives, and the people who work in them are dedicated to providing good care. But, like anything else, they can be misused. And, for the person who values a peaceful death over perhaps a few more days of ICU "life," hospice provides a meaningful alternative.

It can be extremely difficult to sort out when expensive and difficult treatments should be used. It can't be decided on just a single factor, like age, because some very old people can still benefit from them, while others, who may be chronologically younger, can't. These decisions need to be individualized, taking into account numerous factors, starting from the patient's own wishes, and including family and significant others, caregivers, and various kinds of experts. Cost, of course, is also a factor; in this country, by default, insurance companies have become the deciders of last resort, because if they won't pay for a treatment, most likely the person won't get it. To say it again, this is probably the least rational way of rationing care.

A hundred years ago, most people in this country probably died at home. Death was a much more common occurrence, and I think people saw it a part of life, far more than we do today. We have made remarkable progress in eliminating deaths from infectious diseases and other preventable causes, so now people die more commonly from chronic diseases of old age. Because more people die in hospitals, we have become insulated from the reality of death. I'm probably unusual in that I witnessed the actual deaths of both my mother and my father. My mother died in a hospital, a death in which she suffered horribly. My father, a hospice patient, died the peaceful death he always said he wanted. "I want to go to sleep and never wake up," he used to say, and in fact, that's exactly what happened. Having seen that reality makes it much easier for me to contemplate my own death.

I think there have been societies which have found ways to integrate the concept of death into the overall model of what makes a good life, and I understand that what follows are hypotheticals which may idealize and simplify to make the point. These two examples may not be accurate historically, but I am using them to try to illustrate a thought, so please bear with me.

What is important is not the particular way in which a society treats the elderly and ill, but whether it is part of a broad consensus, so that people know what to expect in the closing years of their lives. For example, traditional Chinese society venerated the elderly family member, who was seen as a source of wisdom, and was due the utmost respect, even if the individual was unable to contribute to the household. Unlike us, people did not live in nuclear units, but in multi-generational extended families, and caring for the elderly family member (or members) did not fall on a single individual. Therefore, people could expect that they would receive lifetime care, which, I believe, made them less fearful about old age and death. Those who took care of the elderly did so with the knowledge that they would receive the same kind of care when they became old. In China today (as in many other cultures), we are seeing the breakdown of this pattern and the problems of caring for the elderly emerging as a societal challenge.

A diametrically opposed model is traditional Eskimo society. Perhaps this is a myth, but again I am using it to try to make a point. This was a subsistence society, in which food was scarce, so there were few resources available for people who could not contribute economically, by hunting, gathering, or preparing food. If someone became too old or too ill to do so, the community could not sustain them, and the person would be put on an ice floe to drift out to sea and a certain death. In our context, this of course appears heartless and inhumane, and it surely would if it were imposed on someone who had never heard of the concept; to a person for whom it was an expectation, on the other hand, it would not seem shocking. It was not seen as abandonment, but as what people should expect at the end of life, and I believe was done with love and respect.

In our own society, we have not developed a broad social consensus on caring for the elderly and chronically ill. This is the point I was making in my letter to the Boston Globe; nursing homes have developed largely in the absence of such a consensus, as the default option rather than as an expression of social policy. Working in these institutions is not valued; these are low wage jobs with low pay and high turnover. There is minimal training, which can lead to abuse as underpaid and undertrained workers struggle to take care of too many people to whom they have no social ties. Again, this does not mean that there are no good or caring people working in nursing homes; it is a tribute that many nursing home workers do provide kind and loving care in such environments, with little social support or opportunities to have their work recognized and honored.

I would like to see the hospice concept expanded to provide care not just to the dying, but to others who now languish in institutions. I have written a lot in this blog about the connections I see between my long-time work in the psychiatric survivor movement, in which we have always promoted the concepts of empowerment and choice, and what I have experienced in hospice. I see these values carried into practice in hospice, and I believe they can be brought into many other settings. But this can't happen in the absence of forums to develop a broad societal consensus on dealing with difficult questions.

The current status of the health care debate, with terminology like "death panels" and "rationing" used as sloganeering to shut off discussion rather than promote it, gives me little reason to hope that such necessary discussion will happen, and, in its absence, we will continue to see the unfortunate results of policy making by default rather than by purposeful choice.

Feeling calmer

2009-12-23T21:34:00.002-05:00

My improved mood has continued over the last few days, and my appetite is slowly coming back. At the same time, I am finding even the simple things I do, like moving between the living room and the bedroom, or going to the bathroom, leave me even more short of breath, and take longer to recover from. I guess moving back and forth between anger and acceptance is all part of the process.

On Monday, we stayed up late watching the Giants play Washington on Monday Night Football (which the Giants totally dominated), which got me into a bad sleeping pattern--actually, a lack of sleep pattern. I know that when I stay up too late I have trouble falling asleep, and I ended up getting only two or three hours sleep not only that night, but the next night as well. Fortunately, I broke the pattern last night, and I feel about ready for sleep now, so I'll get ready for bed as soon as I finish writing this (it's about ten o'clock now).

Today Lauren came for the visit she promised when we talked on the phone on Sunday. It was so great to see her, and we sat and talked for quite awhile, ranging from the changes in my condition over the past months, to deeper concepts like the role of hospice in our death-denying culture. She brought me a present (which I guess is going to each patient in the program)--a lovely soft little blanket embroidered "Warmest Wishes from the Hospice Team 2009.

Marty just suggested to me that I should give some (very last minute) thought to giving little gifts to my PCAs (which he would go out to buy tomorrow), but I really can't think of anything. I don't feel very Christmasy. Marty came home from running errands today with a tiny potted tree complete with tiny lights. Christmas is always a big deal to Donna, and she usually has a tree and stuff, but she's been here since the weekend because there was a big snowstorm a few days ago and Marty's been unable to take her home because her house has a narrow, steep driveway that apparently has not been completely dug out (she lives behind the main house so it's necessary to be able to get the car up the driveway for her to get home). The spot in my living room where I've always set up my tree is now the corner with my recliner, and there's really no other place for the recliner (or the tree) to go, and even if there was space, the practicalities of buying it and setting it up are just too much to think about.

The "traditional Jewish Christmas" is said to be Chinese food and a movie, so we may well end up ordering take out and watching a DVD!

What good nursing can do

2009-12-21T14:49:00.002-05:00

When I first became a patient of this hospice program, one of the best things about it was my nurse, Lauren, whose twice weekly scheduled visits were a chance to talk about all kinds of things, way beyond the routine taking of vital signs. Last month, Lauren was out on sick leave and other nurses started coming instead. At first, no one even told me that she was sick, and I wondered why I no longer got to see her. Even when she got back from sick leave, she hasn't been making home visits, and I only occasionally got to talk to her on the phone.

On Sunday morning, I woke up in a really bad mood, feeling very hopeless and alone, partially manifested as generalized physical pain, and put in a call to hospice. On weekends and nights, it's picked up by an answering service, and is relayed to whichever hospice nurse is on call, and I was very pleased that when the phone rang a few minutes later, it was Lauren. I heard real concern in her voice, and she listened to me as I tried to articulate and explain the complicated feelings I was experiencing. I have been in so much physical and emotional pain, as I get weaker and weaker, but somehow my body just hangs on. Lauren explained to me that many people with my disease, by the time they reach the degree of diminished lung function that I have, the rest of their bodies are so deteriorated that they slip into a coma, and they don't suffer, but because my heart is so strong this hasn't happened to me. This follows my pattern of being atypical over so many years, so it's not surprising that it is continuing.

Lauren's own way to conceptualize this, with references to god, who determines when people die, doesn't work for me, and she acknowledges that it doesn't, just as I accept that it does for her. I don't know why I'm still alive--but here I am. Lauren is one of the few people in hospice who seems willing to hear my pain without responding with platitudes, which I don't find at all helpful (Marie, the chaplain, is another person who is open to these complexities). Our conversation came to no conclusions, but just gave me the opportunity to express my pain and confusion, knowing that Lauren could accept my feelings as real and valid.

Marty, of course, has been trying to help me so much, but when I talk about wanting to die, and death being better than this sort of half-aliveness, that's so hard for him to hear. We both wish that we had met much sooner when we could have had so many more good times, and that there's a deep irony in finding the person each of us wants to spend the rest of our life with, when the rest of my life is so finite. That's not usually what is meant--saying "I want to spend the rest of my life with you" usually means an unknown (but long) time!

Another thing I told Lauren was that I'd barely been eating, and she said that I shouldn't let anyone tell me that I should eat, but only eat when I felt hungry, which I told her was what I had been doing. The whole conversation somehow reassured me, and made a dramatic shift in my mood. I felt bad that I had waked Marty up at about seven because I was feeling so miserable, but after talking to Lauren I was much calmer, and was able to tell Marty how much I appreciated all his care and concern, even when I was saying to him--as I had over the past few days--that he should just leave me alone, and was pushing him away when of course that wasn't what I wanted at all. He is so amazing thoughtful and sweet. Just one example--when he and Donna were cleaning up on Friday night after the Hannukah party, he came out with two boxes and told us that he had gifts for us but was sorry that he hadn't gotten to wrap them. Mine was in a Junior's cheesecake box, and I said glibly that I was sure it wasn't a Junior's cheesecake, but in fact that's exactly what it was. He had gotten me one a few months ago (maybe for my birthday, but I can't exactly remember); to us New Yorkers, Junior's is the holy grail of cheesecake (www.juniorscheesecake.com)! Donna's present was a continuation of his tradition with her of an unusual ornament for her Christmas tree, in this case a lovely little penguin from a museum shop. So in the midst of his feeling so overwhelmed he was thinking of making each of us happy. His friendship with Donna is longstanding and one that I'm glad he has.

I have actually been eating a bit more the last few days--still not normal meals, but more than I have been eating, and I've been able to eat some cheesecake, although it's so rich that I want only tiny slices. Even when I feel hungry, I've been thinking carefully about what I want to eat, as I don't want to get back into having stomach aches and nausea. Marty asked me yesterday if I wanted a reheated latke, but I told him my stomach wasn't ready yet. But I may want one or two for dinner tonight (I asked him yesterday to save some).

I had told Lauren how much I missed seeing her, and she said that she was hoping to stop in, just to say hello, some time before Christmas, which will be great. To me, Lauren epitomizes what a hospice nurse should be--one who accepts the fact that each of her patients, at some unknown point in the reasonably near future, is going to die, and who interacts with each of her patients with that shared knowledge. Honesty is so important--and in our death-denying society, hospice is one of the few places where people should be able to talk about death, yet even in hospice I find some of the nurses use platitudes like "you'll feel better tomorrow," which I don't find helpful at all.

I'm really not scared of dying--what scares me is lingering for an extended time in this state where the simplest things become so complicated and so exhausting. My mind still works for "big" things, like the letter to the Globe, but for "little" things, like keeping track of bills and other paperwork, it doesn't work at all, and Marty is trying so hard to straighten it out. I keep losing and misplacing things, which makes me feel so frustrated and so helpless.

But at least I now feel less agitated and less desperate, and Marty says he sees the dramatic shift since my talk with Lauren. Objectively, nothing has changed, but since I feel so different, clearly something has.

Celebrating Hannukah

2009-12-18T22:24:00.003-05:00

I was mixed up when I thought that our Hannukah party was going to be last night, but in fact it was tonight. Yesterday, when I still thought we were having the party then, it was getting later and later and no one was showing up, so I eventually realized I had gotten the day wrong. Marty and Donna spent a few hours yesterday making a practice bunch of latkes, since Marty had always used his mother's method of using a blender, but he had to adapt that to use my Cuisinart instead.

I've been very weak today and didn't want to get out of bed. I did go to the bathroom mid-morning, and needed Ann to help me get back to bed, so getting into the living room seemed too daunting a task. In addition to feeling weak, I also felt incredibly blue today, qualitatively different from the sadness I've been feeling all week.

Marty kept trying to persuade me to get out of bed, but I just wanted to be left alone, and read or dozed most of the day. But after the company arrived, I decided I did want to join in, and Marty helped me to get into my chair, from which I could hear and participate in the conversation, and now I do feel a big improvement in my mood. I still didn't feel up to eating latkes, but I did have some challah and some applesauce, and even though I'm still feeling that my stomach is delicate, the trend is definitely upward.

One positive thing that has happened is that I got a call from the Boston Globe yesterday that they were going to publish a letter I had sent them probably two weeks ago, and it was in today's paper. The topic was a tragic case--two elderly women (one was 98, and the other 100) shared a room in a nursing home, had some sort of disagreement, and one killed the other by putting a plastic bag over her head. It got me to thinking about how awful it is to share a room with a stranger (which happens not just in nursing homes, but also in halfway houses, community residences, and the like). To read the letter, go to www.boston.com, scroll down to "Editorials and Opinion," and click on "Letters to the Editor."

A few very strange days

2009-12-17T13:49:00.002-05:00

I haven't written for a few days, and now that I am feeling somewhat back to baseline I'm going to see if I can describe what's been happening. For the last few days, until this morning, I have eaten hardly anything. I think it was on Monday that I accidentally took too much morphine and got into a really weirded out place, so I've been scared of taking any morphine since, until this morning, and I am very carefully monitoring my intake (with Marty's invaluable help). To make matters worse, I ran out of Celebrex, my arthritis drug, a situation that I knew for weeks was going to happen, but was unable to do anything about it because it just felt so overwhelming, and I was also unable to ask for help, which I finally did on (I think) Tuesday. Marty and Donna have done a lot of work figuring out what I need to do as I am now on Medicare and have to set up a Part D account to order more Celebrex (all of my other drugs are supplied by hospice). Before the morphine made me feel so bad, it first put me into a lovely, dreamlike state, and I had spent several hours just drifting pleasantly.

Of course, without Celebrex (or morphine) I started to ache all over, which contributed to my sense of everything being terrible. Not eating, hurting, and feeling overwhelmed all acted synergistically, putting me into a downward spiral. Now, with the morphine I took this morning, I'm not hurting, and having eaten, I have managed to escape the downward spiral. I have some nice things to look forward to, which also helps. Marty and I have been lighting Hannukah candles, and tonight he's invited some people over and will make latkes (from his mother's recipe). On Monday night, we sat on the couch in the light of four burning menorahs and had a lovely time talking and just enjoying each other's company, which we both agreed we just don't do enough of. Usually people have their Hannukah parties on the first night, but things have worked out so we are celebrating the last night instead.

When I start having trouble eating, I have to think very carefully about what I want to eat which will not upset my stomach. The other day I thought I could eat a pear, but it made me feel awful, which made me even more nervous about eating. This morning, I told Marty I thought I could eat some soup, and to my delighted surprise he had stopped at the kosher deli in Brookline and gotten their wonderful mushroom barley soup. I asked him to put it in a little custard cup as too much food can seem daunting, and I ate it really slowly, enjoying the delicious flavor. About two hours later I had another small portion, and a bit later a piece of whole wheat toast with just a little bit of peanut butter, which is also sitting well. I'm not sure if my stomach is ready for latkes, but I will definitely eat some of the accompanying apple sauce.

When I start feeling as bad as I have the past few days, and not eating (not going on strike against food, but just not being hungry), I start wondering if death is approaching. It doesn't scare me--what scares me is lingering indefinitely in this miserable state, too weak to do much of anything, but still, unfortunately, very much alive.

A little stronger, a little less tired

2009-12-13T17:53:00.003-05:00

I've spent a quiet day in my chair, after a mostly sleepless night. I'm coughing less, so my stomach hurts less, and I think I'm basically gaining back a little energy, although it's hard to see improvement when any little exertion just knocks me out, and I have to catch my breath before I can do anything else. I need to remind myself that I have to sit down right away as soon as I start feeling tired, as I have absolutely no energy reserves. But if I remember to pace myself and break things down into tiny steps I can keep myself from getting into a panicky state of not being able to catch my breath, which is really terrifying.

I watched the Patriots game this afternoon and Marty and I will watch the Giants play Philadelphia tonight. I'm planning to snack on popcorn, which I've been eating a lot of recently. I'm eating a lot less than I have been--today I had a bowl of Cheerios and blueberries for breakfast, and a chicken salad sandwich in the afternoon, and a little while ago I had a lemon poppy seed muffin, which feels like enough food--I certainly am not hungry for anything resembling a regular dinner. I still get a lot of pleasure from eating.

I probably should try to nap a little bit if I am going to be able to stay awake for the game. I drifted off a few times during the Patriots game, but didn't get any really sound sleep.

Tired and weak

2009-12-12T23:03:00.002-05:00

Today was a day that never seemed to get started--I woke up several times and then drifted off to sleep again. At one point, I asked Marty to bring me my morning cup of tea, and then I must have fallen asleep again because when I opened my eyes it was on my bedside table, with no sense of time having passed, so I didn't have my breakfast till about ten.

A few days ago I asked Lauren to get a walker for me, to make it easier to get from the bedroom to the living room, and it was delivered the next day. It definitely helps to have something to lean on, but it is still an exhausting walk that leaves me needing to catch my breath. I've spent all day in my chair, again falling asleep several times, and now I guess I should start thinking about getting back to bed for the night.

Marty and I have been lighting Hannukah candles since yesterday, but he decided to invite some people to celebrate with us at the end of the holiday rather than the beginning, when he will make latkes (potato pancakes) from his mother's recipe. I hope that I'll feel strong enough to sit at the table, as I did at Thanksgiving, and I'm looking forward to the latkes, which I love.

I've been having strange jittery feelings inside my body, and several times my knees have started to shake uncontrollably, which is very scary. But I've been coughing less today, which is a good thing and I hope is giving my abdominal muscles some time to heal. Just sitting and resting all day is tiring.

The advocacy part of my brain is still working well. This morning there was a story in the Boston Globe about a ninety eight year old woman accused of murdering her one hundred year old nursing home roommate, and I immediately sent a letter to the editor about what an awful way that is to spend one's final years, sharing a small room and a bathroom with a stranger--that it is certainly not a life anyone would choose. I feel fairly confident that they will print it, and I'm still hopeful that the Times will take my op-ed piece. At the same time that I find it hard to find the words to express simple things I need, it's strange that I can still write clearly and coherently.

A difficult week

2009-12-11T15:37:00.002-05:00

I haven't written all week because I've been struggling with difficult symptoms--pain, exhaustion, lots of coughing, anxiety, jitters--just general misery. Each day that goes by I feel less and less able to manage my life, which is spinning out of control. I haven't been able to pay my bills, which has increased my anxiety, and it has become a vicious circle. Yesterday, Marie, the chaplain, came for a visit and she, Marty, and I made a start on getting things straightened out. I have money in an ING account which I didn't know how to access, but Marty found a phone number and was able to transfer money into my regular checking account, and he called the mortgage company to arrange for that bill to get paid. What I've learned from this experience is that it doesn't help me to keep these things bottled up--that makes me feel more out of control. Asking for help is the beginning of regaining control, which is hard to see when I feel so overwhelmed.

Physically, things are getting worse. I've been having intense coughing spasms, with very thick mucus that is hard to get up, and my belly is sore from all that coughing. I'm supposed to hold a pillow to my stomach and press on it when I cough, which helps a little. I'm tired from coughing so much, but at least for the past few nights I've been able to sleep soundly. Last night I woke up several times, looked at the clock, and was able to go back to sleep each time after reading for a little while. I must have fallen asleep at one point with the book light on, because the next time I woke up and tried to turn it on it was dead. I felt really proud of myself that I was able to get the batteries changed without needing to wake Marty, and then I read for a short while and got back to sleep again.

Two other important accomplishments this week is that I've managed to read a book all the way through and I've written and submitted an op-ed piece on hospice care. For months now my reading has been limited to the newspapers, the New Yorker, and Vanity Fair, but when I try to read a book my mind started to wander. I've had the novel, The Corrections, by Jonathan Franzen, on my bookcase headboard for months, but I finally started to read it last week, and after a little difficulty getting through the opening section, which I found floridly overwritten, I got drawn in and read for several hours every day, finishing it yesterday. I have to give some though to my complicated reactions to this complex book.

I also wrote a piece about health care reform and hospice care, based on cuts that are in the Senate bill, which don't make sense, since hospice keeps people out of institutional services which are more expensive and often inappropriate. I read the story in the Times on Monday, and instead of just thinking about responding, I asked for the computer and started to write. I spent some time editing and revising it, and ran it past the contact I have at the palliative care organization in Washington, and sent it to the Times on Wednesday. I got an automated reply saying that they would make a decision within three business days, and if I didn't hear from them by then I could feel free to submit it somewhere else. It makes me feel good that at least that part of my brain still works, when I'm having difficulty finding words for ordinary things and get incredibly frustrated when I can't explain what I'm trying to say.

I've been on the phone with Lauren quite a bit to discuss my escalating symptoms. The approach has been to try to thin the secretions, with various drugs and lots of fluids, but then Lauren proposed a different approach, of drying them up instead, and she prescribed a drug that I was to take two drops of, under the tongue. But I accidentally took too much, and my mouth and throat got incredibly dry, and I had to wait for it to wear off. Because it's so potent, and hard to control the dropper when it's in my mouth, Lauren said I should drop it into a spoon and then let it roll off the spoon and let it flow under my tongue. But I'm still coughing, so that approach doesn't seem to be working. I'm just so tired of all this, and it just goes on and on.

An even stranger day

2009-12-06T19:57:00.002-05:00

Today was another day that started out really awful but has gradually improved. I was hoping to sleep late again like I did yesterday, but I woke up about twenty after seven and it seemed like I was awake for the morning. I did a nebulizer treatment, and then Marty and I listened to Will Shortz on NPR, which comes on at about twenty to nine. But when that was over, and since I was feeling really bad, coughing a lot and aching all over, I decided I could just roll over and go back to sleep, which I did, not waking up until the monitor's mechanically cheery voice announced "It is now time to take your vital signs" at ten thirty. I just didn't feel like bothering--I was in a bad mood and everything seemed like too much of an effort. So I just lay there and listened to the machine make multiple attempts to get me to hook up to it, finally announcing "No vital signs monitored."

Marty had been trying to tempt me to go out by suggesting we go to the Arlington Diner, which makes a fabulous veggie omelette, but as an alternative, he had Ann stop at the diner and pick up a takeout order. By the time I had this breakfast, it was about noontime, so I guess it counts as Sunday brunch. I ate half of it and will have the other half tomorrow.

Today was also a day for watching football games, first the Patriots played the Dolphins, losing by a heartbreaking single point, and then the Giants defeated Dallas, in a game that was closer than the final score (31-24) indicated. Unfortunately, Marty, who had originally been planning to take Donna home early enough to at least watch the second game, left much later than planned and didn't get back till a little while ago, when the second game had already ended.

Meanwhile, I was attempting to manage my symptoms of feeling generally awful, and I used enough morphine, ativan, and ABHR gel to finally start feeling better, with no more pain, and just a slight amount of spaciness, which seemed like a reasonable trade off. Combined with the general pattern of feeling better as it gets later, I'm feeling better right now than I have all weekend. Yesterday I needed resting chairs to get from bed to the living room, but today I made it without the chairs, and I've gone back and forth to the bathroom as well without getting totally exhausted (a big change from yesterday).

I'm going to have to go out on Tuesday, since I didn't do anything about getting an absentee ballot, and I definitely want to vote in the special election to fill Ted Kennedy's seat. I hope I'm feeling strong enough that it doesn't turn into a major production, and if I am feeling up to it we could combine it with going out to lunch or something.

A very strange day

2009-12-05T23:18:00.002-05:00

I had a lot of trouble getting to sleep last night, but once I did, I slept for a long time. I woke up a couple of times thinking I was up for good, but kept drifting off again until Marty woke me at about twenty after ten, since my home monitoring equipment goes off and has me check my blood pressure and oxygen saturation at ten thirty.

So I got a very late start to the day, and didn't realize how weak I was until I got up to go to the bathroom and had a lot of trouble getting back to bed. I was gasping for breath and felt totally exhausted, and Marty pretty quickly realized that it was not a day on which he was going to be able to get me to go out.

I called hospice and spoke to Louise, who didn't have much to suggest except the usual (take morphine, use the ABR gel, rest, and that she would see me on Monday). I just feel so discouraged as I get weaker and weaker. I just want this to be over.

And the big picture doesn't look so good either. It looks like Congress thinks it can squeeze health care savings not out of the billions of dollars made by drug companies and insurance companies, but instead from small home care agencies (like visiting nurse and hospice programs), which is absurd, as these programs operate on tiny budgets and save money by keeping people out of expensive hospitals and nursing homes.

Maybe I can mobilize some energy to write something about it for the op-ed page. I'd just need to update the piece I wrote a month or two ago. That's the only thing of use I can see myself doing right now. I'll have to see how much energy I have tomorrow.

Another sleepless night

2009-12-04T14:48:00.002-05:00

Yesterday I was dozing on and off all day, so when it was bedtime I didn't want to go to sleep. I've been in a really bad mood these past few days, feeling so useless and frustrated, just wishing I could start fading away but still somehow hanging onto life. When I finally did fall asleep I had an awful nightmare that Marty was choking me and I couldn't wake myself out of it, so when I did wake up I was wide awake and felt afraid to even try to go back to sleep. I think I finally did sleep for an hour or so at around three or four, so now I'm sleepy in the middle of the day again. It will probably take me another day or two to get day and night straightened out again.

Mindy, my volunteer was here earlier, and she made me feel really good by cutting and filing my toenails and putting polish on them. They hadn't been cut since the pedicure I had before my party, and that was in August. I can take care of my fingernails, and I spend a lot of time filing and polishing them, which is good for my morale. I also wear my jewelry for the same reason. Even though I'm lying around in a nightgown and robe, with my hair not even brushed most days, it feels good to have my rings and earrings on.

Nancie just arrived, and I'm going to try to mobilize enough energy to take a shower, as it's been awhile. Marty told me he'd like to take me out somewhere over the weekend, to see if he can improve my mood.

...and more sleep...

2009-12-01T19:08:00.005-05:00

Before I couldn't sleep, now I can't seem to stop sleeping. I've had three solid nights of sleep, plus drifting off to sleep numerous times during the day. So at least I'm no longer living under a sleep deficit. But the underlying problem, the extreme weakness, continues. Just the effort of being awake, trying to do a few normal things, is exhausting.

Marty, Marie, and I had a good conversation on Tuesday, in which I expressed my fear of hitting a plateau in this extremely weak state and just lingering here. This is the worst thing I can imagine, growing more and more miserable and frustrated as I can do less and less. And today we met with Nancy, and I talked about the same fears. I am just so weak and feeling so blue. Even doing simple things, like writing out some checks, feels like too much. I just want to lie here and watch TV or read the paper or do crossword puzzles.

I keep drifting off into a state of semi-sleep where I can hear the TV or the conversation in the room and think I am participating but of course am not making any sense. I'm tired and bored and frustrated and just don't want to go on like this much longer.

Sleep at last

2009-11-30T16:03:00.003-05:00

We got in bed last night at around eleven thirty. I told Marty I was feeling somewhat agitated, so he suggested that I use the haldol gel, and I rubbed a bit of it on my arm. That's really all I remember until waking this morning at twenty after eight--a deep, sound sleep, and I've dropped off for a couple of naps since then.

Not surprisingly, I feel much calmer today. Lack of sleep really affects moods, and makes everything more difficult. I'm still coughing a lot, although not as much as yesterday, which really tires me out, and has also given me the beginning of an umbilical hernia. Louise suggested I clutch a pillow firmly against my belly when I cough, to give the muscles some support.

We've been eating variants on our Thanksgiving dinner all weekend, and it continues to be just as yummy as it was on Thursday. Last night I was having a plate of all the goodies, sitting in the living room wearing my warm robe, and in the middle of dinner I suddenly got really hot. I needed to take off my robe and even then it took me awhile to cool off. I've also had a turkey and cranberry sauce sandwich for lunch twice, and may do the same today (It's about four o'clock but I'm just beginning to get hungry).

Marty is out taking Donna home--Ann was here until Nancie arrived, and Ann may come back if Marty is delayed getting home.

I'm definitely feeling better than yesterday and I attribute most of it to finally getting some sleep.

Moods

2009-11-29T13:18:00.003-05:00

The past few days I've been experiencing a real sense of loss, triggered by constant reminders of how weak I have become and how there are an increasing number of things I can't do anymore. The result has been a growing sense of frustration and irritability. I have moments when I just want to pick up something and throw it against the wall, although I haven't actually gotten to that point.

Really simple things, like brushing my teeth, have become a major production. I don't have the energy to stand at the sink, and I like to brush my teeth immediately after eating, so Marty (or one of my PCAs) has to set me up with my electric toothbrush (with the toothpaste already on), a towel, an emesis basin (the little curved thing that hospice got for me), and a glass of water. I brush my teeth numerous times a day, and it is so annoying that I need so much help.

Another thing that happens when I get into one of these moods is not being able to sleep at night. Although I have been dozing off during the daytime quite easily, when the time comes to go to sleep for the night I just tense up and can't get to that point of pleasantly drifting off. Having dealt with sleep problems for most of my life, one of the things I have actually enjoyed during the past year is that most nights I do sleep easily and soundly, probably better sleep than I've gotten for most of my adult life.

I don't want to take any kind of heavy duty sleeping meds--I've been using a small dose of amitriptyline at bedtime for the past few years, which most nights seems to do the trick. As a lifelong insomniac I have learned not to worry about not sleeping--when I get tired enough I will sleep, and if I'm not sleeping I can read or watch TV or play around on the computer, which I did last night. I came into the living room at about three (Marty had been having trouble sleeping last night too, but once he finally got to sleep I wanted to let him get some badly needed rest) and I think did drift off for an hour or so.

The long walk from the bedroom to the living room is about as much as I can manage these days, and standing for more than a minute or two without hanging onto something is also becoming more difficult. This morning I went to turn on the living room radio to listen to Will Shortz on NPR; I thought I just had to hit the on button but somehow it had gotten reset and I had to stand in front of it and figure out which buttons to hit, and just barely made it back to my chair (about three steps away). It took me a few minutes to catch my breath from this major exertion, increasing my sense of frustration and leaving me, once again, wanting to smash something.

My general principle is to keep my emotions close to the surface, so I suppose one day I really will start throwing things (it would probably be a good idea to have a plan for something that would make a satisfying crash without doing any real damage).

One good day in a sea of awfulness

2009-11-28T14:02:00.003-05:00

I've been feeling so bad all week that it was kind of amazing that Thanksgiving was so good. Friday and today I'm back to feeling weak and out of breath--it is just so discouraging. Last night I also had trouble sleeping, and was up a good part of the night watching TV. But it's at least better than Wednesday, the day I was so weak I had to make it from the bedroom to the living room in stages of a few steps at a time, with strategically placed chairs along the way.

I am just so sick of this. Every little thing makes me tired, and I have been dropping off to sleep several times during the day. The thing that scares me the most is lingering on in this stage indefinitely. In a few weeks it will be a year since I have been in hospice; at that time I said that I just wanted to live long enough to see spring, and here it is getting into another winter. There's just no point in living like this, and yet I just seem to go on and on. At least I'm not in pain--that would be far more awful--but I just continue to get weaker and weaker, able to do less and less.

Marty continues to be a source of strength and support, reminding me that he loves and cares about me. This would be so much harder without him in my life.

Thankful on Thanksgiving

2009-11-26T12:38:00.004-05:00

Often, when I wake up in the morning, even before trying to get out of bed, I can tell if I'm going to have a good day or a bad day, so after yesterday, which was so awful, it was great to wake up this morning and know that I was going to be much stronger. In fact, a little while ago, I just walked from the bedroom to my chair, without needing to stop, or to hold onto anyone, and not getting really short of breath--a dramatic change from yesterday.

I'm still hoping to get dressed, but even if I have to sit at the table in my robe it will still be really enjoyable. Thanksgiving dinner preparations are going on all around me--Marty, Donna, and Ann are all working hard--and Donna has added a number of additional items to my basic menu, so there is going to be lots and lots of food.

Some things got cooked yesterday and just need to be reheated, but I'm really kind of out of the loop as far as the details are concerned. I know Donna used my recipe for cranberry sauce, which she showed me the other day, and I think the stuffing got made yesterday too (we are cooking the turkey unstuffed). Yesterday poor Ann got stuck with the job of peeling all the tiny little onions that will be made into creamed onions, using a really easy recipe from "Microwave Gourmet" that I have made every Thanksgiving for years.

I got really teary and emotional this morning, which I think is just a release of tension after the awfulness of yesterday. I always try to keep my emotions close to the surface, so I just let the tears flow. I am so grateful for feeling better today, and I am looking forward to sitting at the table and being with people I care about, and who care about me, sharing a meal and all the good feelings that go along with it.

How low can it go?

2009-11-25T18:16:00.002-05:00

I continue to get weaker. This morning I went to the bathroom and just barely made it back to the bedroom, where it took about five minutes before I could catch my breath. I wanted to move into the living room but just felt too weak. When Barbara, the physical therapist arrived, she suggested a few strategically placed chairs so I just needed to take a few steps before resting, and so I was able to make it, in stages, into the living room. I'm much more comfortable in the recliner, and Barbara's bodywork always makes me feel better.

Later Nancie arrived; I'd been hoping to feel strong enough for a shower but definitely didn't have the energy, so she gave me a sponge bath here in the living room, and used dry shampoo on my hair. My hope is to get dressed and sit at the table tomorrow and feel like a normal person!

Ann and Donna have been cooking a good part of the day, and Marty went out to get the turkey from Whole Foods, along with a pumpkin pie and an apple pie, and some champagne. It would be so nice if I have a better day tomorrow and can really enjoy Thanksgiving and all this yummy food. I really love turkey and stuffing and gravy and cranberry sauce and all the other stuff that will be on the table, including baked sweet potatoes, acorn squash, mashed potatoes, brussels sprouts (and I think Donna has added some other things that I don't even know about).

But a morning like today leaves me feeling very discouraged. I get weaker and weaker, everything gets more and more difficult, and I'm quite ready for it all to be over. Apparently, this sounds like "whining" to at least one reader; all I am trying to do here is to document how it feels to have a terminal illness and the effects not only on the patient, but on the family and caregivers. I appreciate those readers who came to my defence and who seem to understand the purpose of this blog.

Trying to get a good night's sleep

2009-11-23T12:13:00.003-05:00

After being so groggy most of the day yesterday, I had no trouble falling asleep, and both Marty and I were soundly asleep at two A.M. when my Lifeline machine suddenly went off--"It's time to test your Lifeline." This machine is loud on purpose, so it can be heard no matter what room I'm in, so of course we both woke with a start, and after that neither one of us got much restful sleep. (Lifeline is a service that gives you a button to push if you should fall or have some other emergency when you're alone in the house, and they will send help.)

Marty likes to go to sleep with the TV on and the timer set so that it turns off after an hour, and I'm pretty used to that, but last night he was watching something eerie or disturbing (I can't remember exactly what), so I asked him to change the channel, and he gave me the remote so I could put on something that wouldn't bother me. I put on a show called "Platinum Weddings," which shows these really extravagant weddings, and which I enjoy in some weird way. He fell asleep, and I watched that on and off, drifting into sleep but never really soundly, thinking several times that it was morning but discovering that it was four A.M., then five, and then I must have finally gotten into a deep sleep because it was twenty after eight. Our morning pattern is to watch two episodes of "The West Wing," which start at eight, and we're almost always awake by then. I'm less groggy than I was yesterday, but I'm sure would feel even better if I'd slept soundly through the night.

This morning I called the Lifeline service, which is based at Mount Auburn Hospital, to complain, and got some "explanation" that really didn't explain much. The guy said that if it hadn't been tested in the last thirty days this could sometimes happen, and I tried to emphasize that it should never happen in the middle of the night. The upshot of it is that they are going to send me some stickers for my calendar to remind me to test it within each thirty day period, whereas I really think the onus should be on them. I am using Lifeline for peace of mind, but after this might want to reconsider if it's more trouble than it's worth.

Never did make it out today

2009-11-22T21:38:00.005-05:00

Maybe because I slept so poorly last night, I spent a lot of today in a semi-stupor, drifting in and out of sleep. I was trying to watch the Giants game (fortunately, they broke their four game losing streak), but even that was an effort. It was pretty clear that I just wasn't up to going out. At one point, I suggested that we go out for dinner, but I was still pretty non-functional, so that didn't happen either

I'm sleepy again now, so maybe I'll be able to sleep when I'm supposed to, at night and in bed.

After football, I was watching "60 Minutes" and they did a pretty good story on end of life care, talking about how difficult it is to raise these questions with patients, doctors, and families, and that therefore people end up getting treatments that don't benefit them and just prolongs the dying process, and meanwhile costs a lot of money. Rather than saying to myself that I should write to them, I immediately got out the computer and sent an e-mail supporting their main points and describing my situation. "60 Minutes" has run some pretty horrible mental health stories over the years, but that's no reason not to approach them on a story that they might be able to get right.

Possibly getting out this afternoon

2009-11-22T11:33:00.002-05:00

It's still unseasonably mild, and Marty is trying to convince me to go out this afternoon, to a photography exhibit about Bethlehem. I'm coughing up a storm this morning, so I'm not sure how much energy I have, but it certainly would be nice to see something other than the inside of this house for a few hours.

If I stay home, I can watch the Giants game on TV at one, but if we go out Marty will set up the machine to tape it, which we can watch when we get back (trying to make sure that we don't hear the final score, which takes all the excitement out of it). But I think I will make an effort and see if we can actually get outside and be involved in something that takes my mind off being an invalid.

I had a lot of trouble sleeping last night (not surprising after getting more than ten hours the night before) and around six A.M. I moved myself into the living room, and have been reading and watching TV and playing around on the computer most of the morning. A little while ago Marty tried some dry shampoo on my hair (an aerosol can of some sort of powder that gets brushed through the hair), and he said it definitely looks better. If we are going out, I have to start thinking about getting dressed, as everything takes such a long time.

For awhile the sun was out, but now it's cloudy again.

Discouraged

2009-11-21T18:57:00.002-05:00

I get so frustrated when people tell me I'm being "brave." I certainly don't feel brave. I feel so useless most of the time, unable to do the simplest things without help. The only thing that still seems to work--at least sometimes--at my old level is my brain. But even there, I don't seem to have the patience, or the stamina, or whatever, to do any sustained work.

The tiredness, the fatigue, is so overwhelming. If I close my eyes, I can feel myself drifting off towards sleep. And sleep is a good thing. Last night, making up for a night of poor sleep the night before, I think I slept for more than ten hours. And it was good that Marty got a pretty good night's sleep, too. So the day got a late start; I didn't have breakfast till about ten, and I had a late lunch in mid-afternoon. Food continues to be pleasurable, anyway.

Meanwhile, I have to deal with important decisions, like whether to rent out the upstairs or turn the building into two condos. I get so worried about running out of money. I really didn't think I'd live this long, and although the general trend is definitely downward, it is really, really slow, and I'm so afraid I could linger on like this for awhile, just watching my money dwindle and getting weaker and weaker.

I hate this damn disease!

Hitting a plateau?

2009-11-20T19:26:00.003-05:00

Today was not as good as yesterday, but definitely better than Wednesday. I've been able to get into my chair and have spent most of the day here, but I've been coughing a lot all day, and I've had a headache a lot of the day (although much milder than the one the other day). Louise was here this morning to check me out, and we had a meeting with Nancy, the social worker, reviewing the emotional roller coaster I've been on the last few weeks. It feels good to just let out my emotions and try to figure out what are the best steps for me to take from here.

Meanwhile, I've had some opportunities to use my brain--a MindFreedom International (http://www.mindfreedom.org/) board teleconference, a phone interview for a Website on recovery and empowerment, and some e-mail correspondence with the hospice lobbying group. I'm hoping I feel strong and focused enough next week to write something for them. Recognizing that I still can do useful work certainly helps my overall mood, since in general I feel so discouraged.

The scariest thing right now is that I could end up plateauing at this level for an indefinite time period. To weak to wash or dress myself, needing help to go to the bathroom or brush my teeth, getting outside only on special occasions with lots of support and paraphernalia--this is not the life I want.

There are still nice things to look forward to--like Thanksgiving--but, in general, I don't see all that much to get excited about. I'm so tired, and I'm so tired of being tired.

So many ups and downs

2009-11-19T11:14:00.002-05:00

I haven't posted anything for awhile, but there's been a lot going on. Yesterday was an unbelievably horrible day when even the slightest exertion left me gasping for five minutes or more until I could catch my breath. I spoke several times on the phone with both Louise and Lauren, and when I had taken all the meds they suggested and still wasn't feeling any better, Lauren said I shouldn't even try to get out of bed.

This exhaustion actually started the day before, Tuesday, when Marty was out and first Judy and then Patti were here. Judy went searching under the bed and found the shield for the book light, which was all the way over under Marty's side (we figure the cats had pushed it there), and both she and Patti did quite a lot of straightening up and putting things away. When Patti had to leave, Marty wasn't back yet, so I told her to put a note on the front door for the guy from the pharmacy, saying to be patient and someone would come eventually. Marty got home just a short while after Patti left, but then he went back out to the car to unload groceries and it was at just that moment that the bell rang. It rang several times and Marty still wasn't back so I decided I had to answer it and walked the short distance to the front door (I think it's about the same distance as from my chair to the bathroom). As I was opening the door my knees started to tremble uncontrollably, so the first thing I said to the poor deliveryman was "I'm going to fall." "I won't let you fall," he said, and he put out his arms to hold me up, and just then Marty came in and the two of them helped me back to my chair, but it was very scary. Marty said that when he walked into the living room and saw my chair empty he got worried, and his first thought when he saw the guy holding me was that he was attacking me, but he quickly figured out what was going on. When I told Lauren about it yesterday she explained that my brain was sending oxygen to my lungs and there was none left over for the muscles.

Yesterday there was two other brief periods when I was left alone, first between Patti and Nancie and then between Nancie and Marty. Because I wasn't supposed to get out of bed, I peed in the diaper, which for some reason leaked so everything got wet--my nightgown, robe, the sheets, the bed pad, and even the duvet cover, so when Nancie arrived she moved the chair into the hallway right outside the bedroom so I could sit while she got all the wet stuff off the bed and into the washing machine, and then made the bed. I have only one mattress pad, which wasn't out of the dryer by the time she had to leave, so today Ann will have to remake the bed with the pad, and we definitely need to have a second one.

I was so exhausted that I kept drifting in and out of sleep all day, but I got a pretty good night's sleep last night and as soon as I woke up I could tell I was feeling stronger. I was able to go to the bathroom by myself without getting too exhausted, and a little while ago I walked into the living room and got settled in my chair, which feels like a major accomplishment.

I haven't been out for awhile--I think the last time was last Friday, when we went out to dinner at the Brazilian barbecue place in Cambridge, which we enjoyed. Fortunately, it wasn't till after we had finished eating that Marty spotted a little mouse running around between the two buffet tables. We asked to speak to the manager, who was very apologetic, and said that they are constantly trying to keep the place clean, but all kinds of things can get brought in by suppliers. He said they have an exterminator come regularly, and he really sounded sincere and concerned, and asked what he could do to make it right. I suggested that he take "something off the bill," and when it came he had charged us for just one dinner instead of two. We will definitely go back there at some point since I don't believe the place is unsanitary and we really do like the food. Of course if we see something out of line a second time we'd have to reconsider.

Marty wanted me to come with him on Sunday when he went to a photography show in Cambridge featuring pictures taken by Palestinian teenagers from the refugee camp in Bethlehem, but I wasn't feeling up to it. Right now I can't even imagine feeling up to going out, but I know things change from day to day. We've been having a string of unseasonably warm days, which I wish I could take advantage of.

Plans are moving along for Thanksgiving dinner. Marty and Donna went shopping for all the non-perishables yesterday, and I ordered a turkey from Whole Foods, and checked with their bakery department that they will have plenty of pies so they don't need to be ordered in advance. Eating is one of the few things I can still really enjoy, and I'm planning for lots of leftovers so that Marty won't have to do much more than reheating for a few days to produce delicious lunches and dinners. But meanwhile there's lots that needs to be done, and I feel so frustrated that I can't do any of it, just direct others.

A killer headache

2009-11-14T14:52:00.003-05:00

I slept rather fitfully last night, getting a good chunk of sleep in the early part of the night. Marty was up quite late (both of us occasionally have these nights when we're too keyed up to even try to sleep), so when I woke up after he had finally gotten to sleep I didn't want to disturb him, because I knew how much he needed his sleep. Somehow I managed to drop my itty bitty booklight off the bedside table and, feeling around in the dark, I found the main part (including the bulb, which amazingly didn't break), the batteries, the battery cover, but not the shield that goes over the bulb and directs the light. I was even able to get it put back together, and read for awhile without the shield, which created much more glare. (You can see what this looks like at www.zelco.com.) Eventually I woke up at about a quarter to eight, with a splitting headache, and since I wanted to let Marty sleep as long as possible, came into the living room. I took some morphine, which didn't even put a dent into the pain, and the next hour or two was sheer hell. It was a combination of a sinus headache and pain across the whole front of my head. Eventually Marty got up, and gave me some tylenol and some ativan, and with some additional morphine I was finally able to get the pain under control. I then spent a couple of hours totally doped up, which was much better than being in pain, but unpleasantly non-functional (I was trying to do the Boston Globe crossword, which is pretty easy, but kept drifting off so that it took me well over an hour to finish it). Given the choice between pain and being so drugged, I'd definitely take the latter, but it wasn't fun.

It's now mid-afternoon and I think the worst of the drugged feeling is over, and my head doesn't hurt, but it looks like this is going to be a totally wasted day. I hope we can find the missing part of the booklight, but since both Marty and I have trouble getting down on the floor (and especially getting up again!), it may have to wait until the next time a PCA is here. I know that Marty has some interesting events today and tomorrow, but right now I can't even imagine feeling strong enough to want to go out.

Trying to go to a meeting

2009-11-13T19:11:00.002-05:00

Reading my e-mail the other day, I discovered that a meeting of a board I sit on, Human Services Research Institute (http://hsri.org), was meeting today in Cambridge. I had gotten an earlier notification, but had forgotten (I have a memory like a sieve these days because of all the drugs). I called the logistics person, who had already made a hotel reservation for Marty and me, and started figuring out with Marty the logistics of getting us there. He had to go to help Donna with some problems on Thursday morning, but he was sure he'd be back in time to load up the car and drive us to the hotel for the pre-meeting dinner.

Ann was here and helped me get packed and dressed, but then Marty called and said he was stuck in traffic and definitely would not get back in time. He suggested I call the hotel to ask if they had a wheelchair, which it turned out they did, so Ann drove me to the hotel and a very nice hotel person helped me into the wheelchair and brought me up to the room, where I rested until it was time to go down to the restaurant for dinner. I called the front desk and someone came immediately and brought me downstairs (it was really a pleasure to get such excellent, friendly service). There was some wine and cheese before dinner, and good conversation, with people expressing appreciation that I had come. Then we moved into the restaurant proper for dinner, and Marty arrived just as people were beginning to get their food. I had a delicious steak, served with wonderfully seasoned sauteed mushrooms, but was very tired and couldn't eat that much, although I did polish off the chocolate cake that was served for dessert.

The oxygen company had delivered a concentrator (when I arrived the guy at the front desk said that it had just been delivered and put in my room), so I had a good night's sleep, but woke up still feeling tired. The room had a wonderful roll-in shower which I really wanted to take advantage of, but just didn't have the energy. Marty helped me get dressed and we went down for the pre-meeting breakfast, which I just picked at, and only about an hour into the meeting I announced that I was too tired to continue. I called Marty, who had gotten an extended checkout till 3 P.M., so he took me back to the room and I promptly fell asleep for several hours. When I woke up Marty finished packing and we came home, and I've been resting ever since. I feel so discouraged that I didn't have the energy to do something that uses my intellect and takes my mind off being so sick. Right now I don't want to do anything except rest and sleep.

Tired, frustrated, and anxious

2009-11-10T13:37:00.003-05:00

Maybe it's the letdown after the trip, but I feel so tired and with so little to look forward to. My medical condition has plateaued at a very low level, leaving me too tired to do much but apparently too healthy to die. And all the tension between Julie and me is sapping my emotional energy. As always, I'm trying to keep my emotions on the surface and let myself cry when I need to cry.

I'm turning my thoughts to Thanksgiving, which we will keep small--just Marty and me, plus Donna and possibly one or two other friends. Thanksgiving is my favorite holiday--with no religious significance, it's about community and mutual support, two things of great significance in my life. We've figured out a menu most of which can be prepared in advance, and which will leave lots of great leftovers. Planning a lovely meal with friends is a good way to keep my mind off all of this bad stuff. And I really do love turkey and gravy and cranberry sauce and all that good stuff.

A lot of people find it silly, but I really do like to use Thanksgiving as a time to reflect on and appreciate the things in my life I am thankful for. Even with all the things that are so bad in my life, dying of this awful disease, as well as the estrangement from my daughter, the amazing thing is that I still really do have things to be thankful for. Having Marty in my life and seeing daily evidence of his love and devotion is the biggest, and almost as big is the care I get from hospice, helping me to maximize the time that I have and make it as good as possible.

This morning I got an e-mail from a Website called disease.com, saying that they had selected my blog as a "Top Blog," which they will list on their site and giving me a banner about it to display on mine. I took a look at the site but can't figure out who sponsors it--it doesn't seem to be primarily commercial, but I would like to find out more about it. It does seem that it would get me a lot more readers.

Some very tired days

2009-11-07T11:46:00.006-05:00

Although I didn't feel abnormally tired in the early part of the week (when I was expecting to, after the trip), the last few days I've been feeling really exhausted. I seem to have lost a day, as I find it hard to believe it's Saturday already. I just haven't done much of anything.

There is a big change about to happen, as Julie told me the other day that she and Jim decided they need more space and are moving to a larger apartment nearby. She said that she would take care of advertising the apartment and doing the initial interviewing, although of course I would make the final decision. Arlington is considered a desirable place to live, so I feel confident that it won't take long to find a tenant. Oddly, I was thinking a few days ago that it must be difficult to have just one bathroom for five people, and then a few hours later she told me about moving!

I never had the energy to try taking a shower while we were away (there was some sort of fold-away built in seat in the tub in the hotel), but on Monday I was feeling strong enough, so Nancie gave me a wonderful shower. Then when she was here on Wednesday I told her I was feeling itchy all over (I had waked up several times during the night because of it), so she rubbed lotion all over my body, remarking on how dry my skin looked. And when she was here yesterday I told her I didn't feel strong enough for a shower, so instead she gave me a lovely sponge bath in bed, and with more lotion and a fresh nightgown, which made me feel great. (This is just one more example of the quality of life issues that are so prominent in hospice care.)

Marty went out to Bed Bath & Beyond the other day and bought some new fluffy pillows, and I tried last night to see if I could sleep better with my head raised a bit higher. I'm not sure if it worked or not, as I woke up several times and turned on my reading light, but each time I found that after a few minutes nothing I was reading was making sense, so I got back to sleep quite quickly, waking for good about eight. But I've been both tired and sleepy all day.

My vital signs monitor is acting oddly. Usually, the voice tells me first to put on the blood pressure cuff, and then the finger sensor, and then to push the start button, but for the last two days it has gone directly from the cuff to pressing the start button, leaving the finger sensor out entirely. I told the nurse who called me after the readings were transmitted about this problem, and she said she was leaving a note for Maureen, so I guess the machine will have to be recalibrated, either remotely or in person. Technology is great--when it works!

As I write, I'm watching the debate in the House on the health care reform bill. It is astonishing how many lies the Republicans are telling about the evils of "government run health care," totally ignoring the ways that insurance companies are the real bureaucrats between doctors and patients, denying care while making enormous profits. Even this bill, if it passes, is so watered down from what it should be that I wonder if it will make enough of a difference.

It would be really nice to go out somewhere this weekend--the weather is mild and the sun is out--but I feel too tired to even think about getting dressed. And with the change to standard time it now gets dark so early, something I always hate and which reminds me that winter is coming. Why isn't it time for me to just check out?

Hospice--patient centered care

2009-11-04T12:06:00.003-05:00

My trip to Omaha never would have been possible without the support and cooperation of my hospice program, Visiting Nurse and Community Health of Arlington, Massachusetts, and the Omaha hospice program, Visiting Nurse Association of Omaha who provided seamless coverage and made me feel safe and secure. About a week before the trip, I notified Louise, who has been my regular nurse since Lauren has been out on sick leave, and the administrator of the Arlington hospice located the Omaha program and sent them my records. Before we left, I also called Omaha to give them information about our flights and where we would be staying, and when we arrived at the hotel I called to let them know the trip had gone well. The nurse on call, Scott, came to the hotel, although it was quite late in the evening, just to check me out (he also brought some distilled water which we needed for our "elephants"). He was so cheerful and friendly and encouraged us to call at any time if there were any problems.

When we needed to call, the next day, because I was feeling so awful, sick to my stomach and probably feverish, the nurse on call, Amy, came and stayed for several hours, first administering some medicine that she had brought with her at my request (a compazine suppository), and then, when that brought only partial relief, she called the doctor and went out to get some additional medicines. All together I think she was with us for several hours, and she was so supportive and positive while I was weepy and miserable.

The hospice movement attracts certain kinds of people, who find it rewarding to work with dying patients, although I suppose many people would not find it appealing work. But in all my experiences with hospice, both when my dad was a hospice patient, and now my own, I have found a group of people who are upbeat without any kind of false cheerfulness, but who instead can help to find a positive aspect in any situation.

When I first came into hospice, I was shown a diagram of patient-centered care, with the patient represented by a big circle in the middle, surrounded by smaller circles standing for family, nurses, social workers, etc., all of whom are there to help the patient achieve his or her goals. So when I said I wanted to go to Omaha, many people at both agencies had to do a lot of things to make it possible, without any sense that they were going out of their way or doing something "extra" or unnecessary--if it was something I wanted to do, hospice was there to make sure it happened.

So when I learned recently that Congress has proposed cuts to Medicare hospice funding, I found it shocking. According to the Alliance for Care at the End of Life, hospice programs are facing an 11.8% rate cut due to regulatory changes and health care reform, which could lead to programs not being open to new patients, or even having to close. Cutting hospice is certainly not cutting the "waste, fraud, and abuse" that we have been hearing so much about in the health care reform debate. In 2007, an independent study found that hospice saved Medicare $2 billion, so it makes no sense to cut these programs. (See www.nhpco.org/advocacy.)

This is, of course, the same institutional bias that we have always complained about in the mental health and disability advocacy communities. Because of the big taboo against talking about dying, people end up dying expensive deaths in hospitals in which quality of life is not a major concern, and which Medicare and private insurance pay for without question, instead of dying at home (as most people say they want to do), with compassionate hospice care that puts their quality of life at the forefront.

Somehow, we need to build a coalition around this issue--cutting hospice is wrong morally, and wrong fiscally. There certainly is billions of dollars of waste, fraud, and abuse in the health care system, where some people are getting very rich, but it's certainly not in hospice programs, which run on a shoestring.

The rest of the trip...coming home

2009-11-03T18:42:00.002-05:00

After I gave my talk I was exhausted, but also exhilarated. So many people came up to me, wanting me to sign their copies of my book, or the program, or to give me their cards or things they had written, or just to talk. Eventually we made it back to the hotel room and were able to rest and relax. I felt so totally different from the way I'd felt on Thursday, when I was so miserable and scared and wondering how we were ever going to get home.

We talked about going out somewhere for dinner (the hotel van was available to take us to an area with lots of shops and restaurants), but I was nervous about using up any excess energy before what was sure to be a tiring travel day, so we ended up eating in the hotel restaurant again, as we had the night before. It was nice when my good friend Pat Risser pulled up a chair and we got to have a nice long visit.

On Friday evening after dinner we went to see some of the talent show, which is always a mixed bag, but included some pretty talented people, especially one guy from West Virginia with a gorgeous voice. Gayle Bluebird did her "Henrietta" persona, which she does every year; this year, her act was that she was talking on the phone with Mark Davis, who was too sick to be there, so he couldn't do his specialty, in which he appears in full beauty pageant regalia as "Miss Altered States of the Arts"! It was very funny and was nice to have Mark there, at least in spirit. (I love the way in which the GLBT contingent at Alternatives have named themselves the very in-your-face Fruit and Nut Bar).

The talent show was supposed to include an "ice cream social," so Marty decided not to have meat for dinner so he could eat ice cream later (since he observes kosher requirements); what a disappointment when we found just some little cups of sherbet and frozen fudge bars. But when we stuck our heads in after Saturday dinner at the Conference Halloween dance, it was a nice surprise to find a hotel waitress cutting up a big cake and we each had a big slice, and then called it a night. (Marty told me he had had a conversation with the hotel restaurant about making a small cake for my birthday--which was on Friday--and that it had ended up with them saying it wasn't possible.)

When Bryce, the guy from Philadelphia who set up our tickets asked about scheduling, I told him we definitely didn't want to take any early flights, so we weren't scheduled to leave until four, which turned out to be a very good thing (in addition, the clocks had gotten set back an hour to standard time, giving us an extra hour). We started packing, and then waited for one of the hospice nurses, Kathy, to come to take the port out of my arm that Amy had left in place. Everybody we had dealings with from the Omaha hospice was just so nice and friendly and helpful that we decided we would send a card of appreciation, and I have some nice note cards (yes, actual mail rather than e-mail!).

Then we went for the hotel's Sunday brunch, as we didn't want to end up in the same situation as on the trip out, when we ended up not eating all day, which may well have contributed to me getting so sick. Marty and I each got an omelet--mine was mushrooms, onions, ham, and cheese--but when I started eating I got hit with one of those extreme fatigue episodes and had to struggle to eat about half of it, along with some delicious fresh fruit, juice, and tea. Fortunately, I was mostly packed, and we had time when we got back to the room for me to sleep for over an hour. Marty said he had a hard time waking me up (when I was falling asleep I couldn't imagine how I was ever going to manage the trip), but sleep was restorative and I felt much better.

The trip itself went smoothly. We were worried about the portable concentrator, which has a much shorter battery life than promised, but between the extra battery pack and keeping the concentrator plugged in before we boarded each plane, the oxygen lasted. On the first leg, we were seated in Row 3, so I said I could walk onto the plane once I got out of the scooter at the end of the jetway, but on the Cincinnati-Boston leg we were further back so they used the aisle chair. Because they were small planes there was no jetway when we got off, both in Cincinnati and in Boston, so we had to use a rather scary lift, but in both cases my scooter was waiting for me right on the ground and so it was easy to get into the terminal.

One of the things that has changed since my flying days is that airlines charge for checked bags. United exempted anything labeled "medical equipment," and charged $10 per bag for the others; Delta's charge was $25 and they did not exempt medical equipment--very annoying!

We had a ride arranged, which also worked out perfectly, but by the time we were in the house it was about midnight and we were too tired to think about much else but getting to bed, and unpacking only what we absolutely needed, like our elephants and my nebulizer. I'm really surprised that I'm no more tired than normal, after all these stresses and expenditures of energy.

It's good to be home!

Saturday's award ceremony

2009-11-02T21:19:00.003-05:00

Lunch on Saturday was the whole reason for my trip. Marty and I were seated at the head table, along with Joseph and another staff member of the Mental Health Association of Southeastern Pennsylvania (his organization), and I was sitting next to a woman I didn't recognize, so she said she was there because of her husband (sitting on the her other side), who turned out to be Senator Nelson from Nebraska. When it was his turn to speak, he went on and on and on about all his accomplishments in mental health, most of which had only tangential connections to our issues, although I was glad he mentioned probably Nebraska's most prominent consumer/survivor activist, J. Rock Johnson, and it was clear from what he said that they had had many interactions. When he'd finally finished, the two of them couldn't get out of there fast enough, which I found rather rude!

I had said to Marty that I wasn't sure what I would say, but felt confident that it would come together, but first, when I was introduced, the whole room erupted in chants of "Judi!...Judi!...Judi!..." which went on and on, and everyone rushing forward with their camera phones so that I felt I was surrounded by the paparazzi! When I finally got to speak, I was close to tears. I talked about how important this movement has been in my life, transforming me from someone who saw herself as a helpless "mental patient" to someone who was part of an important movement for social change. I talked about the work we had done, and what we had accomplished, but also how much more that needed to be done, and how gratifying it was to see so many new people getting involved, bringing in their own ideas and new energy, but recognizing that were building on what had come before. And I talked about what my life has become now, and how I saw hospice as the model of what we wanted the mental health system to do--putting the person's needs in the center and helping to figure out how to make those ideas and dreams happen. I certainly never could have made this trip without all the support I got from hospice both here and in Omaha.

I'll write more about the trip home (which went quite smoothly), but right now I'm tired and ready for bed. Amazingly, I'm not extraordinarily tired, and when Nancie was here earlier I even felt strong enough for a shower.

The trip went well, but then disaster struck

2009-10-31T11:28:00.004-04:00

After all the worries about all the things that could go wrong, things went about as well as they could on Wednesday. Ann came first thing in the morning to help with last minute packing and organizing, and Tim arrived on schedule to load everything up, including the scooter. As we started driving to the airport and he was asking what route to use, I suddenly remembered what the cab drivers call "the back way," which keeps you off the highways which can get jammed, and I was able to remember all the twists and turns. When we pulled up at the United terminal we easily found a porter for all our stuff, while Marty set up the scooter and we rolled up to the counter. It's been so long since I've been on a plane that I'd forgotten all about reserving seats, so we ended up pretty far back, but when we got to the gate the agent there was able to move us a few rows further up. As promised, I was able to drive the scooter right to the airplane door, and it was then hand lifted down to baggage, while I was put into an aisle chair and rolled to my seat.

The woman sitting in the window seat was also going to Nebraska (to Lincoln), and when I asked Marty if we could tell from the airport diagram where the commuter flights left from, she said they were usually in another terminal that looked to be a very long way from where we were coming in, so I worried about that for awhile. But once we were off the plane (again, the routine with the aisle chair, and, as promised, my scooter waiting for me just outside the airplane door), the agent told us that our flight was just at the other end of the terminal we were in. I was worried about Marty having to walk that far, but there was one of those carts that transport people with disabilities right there, so Marty got on that and I rode my scooter to the gate. It turned out that our flight was going to be late, because the crew was coming in on another flight, so there was time for a bathroom break. We should have gotten something to eat, but for some reason didn't, and eventually the crew arrived and we were able to board. The flight attendant asked to see the doctor's letter for my oxygen, which we hadn't needed until then. By that time, we were on the auxiliary battery pack, as this portable concentrator just does not have the battery life we were told it would.

Our arrival went smoothly once again, with my scooter ready for me, and our baggage already on the carousel by the time we got to baggage claim. The hotel van was waiting, and although it was quite full they were able to find room for us and all our stuff, with me in the scooter using the lift. At the hotel, a bellman took all our stuff from the van to our room. By this time we were both exhausted, and quite hungry, although I knew that I was only going to be able to pick at my food, because I was so tired. I also called our contact person at the Omaha hospice, because the large concentrator had not been delivered, so they put in a call to the oxygen company, and the technician arrived with the machine at just about the same time as Scott, the hospice nurse, who checked me out. I was amazed that I was feeling as good as I did, just very tired, and once we had eaten we went to sleep fairly quickly.

Unfortunately, I woke up on Thursday morning feeling awful, sick to my stomach, and with a stuffy nose that made it hard to breathe through my nose (and when I breathe through my mouth I'm not getting oxygen through the nasal cannula). I was feeling worse and worse. Marty urged me to take my pills but I said I was just going to throw them up. He tried the haldol cream, but it had no effect, and I was getting somewhat hysterical (and I'm sure very difficult). Marty called hospice, and a wonderful nurse, Amy, came. She called the hospice doctor, who prescribed some meds, so she went out to get them, and when she came back she gave me a couple of injections. Pinkypine so rarely has to do his job of getting held and squeezed whenever I get a needle, since I get one so rarely these days, but good bear that he is, he did quite well.

It took awhile, but eventually the meds kicked in. I was a bit alarmed that one of them was haldol, but I imagine it's a much lower dose than when it's used as a psych drug. Amy also put some sort of port into my arm so that Marty could give me additional drugs, which he did even though the thought of it makes him feel queasy. It didn't involve a needle, but a plastic connector that went into the port, but he still didn't like it, although he certainly rose to the occasion. Amy had said the meds would make me sleepy, and even though I'd slept a good part of the day, I woke up Friday morning feeling much better, and once again able to breathe through my nose. I was also hungry, so Marty went downstairs to the buffet breakfast and got there just as they were closing up. He brought some fruit and danish (and some bacon that my stomach didn't feel ready for), and I ate and drank and took all my pills, and eventually got dressed and we went to lunch.

I had missed the Thursday evening event where I was given the first annual Judi Chamberlin Joy of Advocacy Award, but saw Joseph Rogers at lunch, where he told me he had the actual award, which was a huge jar filled with chocolate! He said he would get it for me, but I told him we had so much stuff to transport that I would much prefer that he ship it to me. I was able to eat a reasonable amount of lunch, and was feeling pretty good. On Thursday, in my semi-delirium, I kept saying what a mistake the trip had been, and wondering how we were going to get home, but now I feel much more positive. I called hospice to report that I was feeling better, and got another very nice nurse who was familiar with my case and was glad to hear the good news.

It's now Saturday and we actually made it down to breakfast, and we're now resting until lunch where I'm being honored. It is so good to be here and to be seeing so many people that I thought I might never see again, as well as meeting people who are telling me how much my work has meant to them. This morning's speaker was Andy Imparato of the American Association of People with disabilities (www.aapd.com), who talked about the importance of cross-disability work and pointing to a lot of recent successes in Washington, which was good to hear. He and I got a brief chance to talk afterwards, and we're going to talk more in the next few weeks.

Through all of this, Marty has been an absolute rock, calm and steady when I needed him, and doing a lot of unpleasant tasks without complaint. Having him in my life continues to be wonderful.

Getting ready to leave

2009-10-27T17:38:00.002-04:00

After accomplishing almost nothing yesterday, I feel much more energetic today, so I have been working today at getting packed and organized. I suddenly remembered yesterday evening that each airline needs a signed form from the doctor regarding my oxygen (which we both knew about last week, but then forgot), so today Marty took the forms to Dr. Meyer's office, and I called the airlines regarding the other problems, which I hope are now not going to be problems.

We have arranged a ride to the airport on this end, but I forgot about needing a ride at the other end, so I've put in a call and sent e-mail about that. I had asked the guy from the Mental Health Association of Southeastern Pennsylvania, which is organizing this year's conference, to make sure we didn't have to be on any really early flights, so we are not leaving Boston until 1 P.M., and our flight home leaves at 4 P.M. This morning we both slept until after nine--amazingly late--so I think tomorrow we will need to get up with the alarm, as there is some stuff that can't be packed till the morning (like my nebulizer, and both of our "elephants" (which is what we call our bi-pap machines, because of the hose that looks like an elephant's trunk).

I've talked with someone at the Omaha hospice, and they sound very enthusiastic about my coming there. So now I just have to hope that everything goes smoothly with the flights, my scooter, making the connection, and all the details of flying. Fortunately, I'm feeling very strong today, and hope that things will be as good or better tomorrow. Unfortunately, Marty isn't feeling well--last night when we were getting ready to go to bed he started feeling very weak and out of it, and even after a night's sleep he is still not feeling great. It's a little scary for me (and I'm sure for him, too), but I hope he'll be feeling up to traveling tomorrow.

Another amazing thing that happened is that I got an e-mail from someone who works for an organization in Washington that lobbies for hospice and palliative care issues, who came across my blog and wants me to help them lobby against proposed cuts in Medicare hospice programs. It's the exact same issue as in mental health--cut community programs that save money and improve quality of life, even though it will end up costing more down the line. I e-mailed her right back and also left a phone message, and am looking forward to finding out more.

I got a call this afternoon from Lauren Spiro, who is the staff person for our organization with the mouthful of a name--the National Coalition of Mental Health Consumer/Survivor Organizations (www.NCMHCSO.org), reminding me that I will be receiving the first "Judi Chamberlin Joy in Advocacy" award at their meeting on Thursday evening. She was so excited that I will be there and was hoping I could receive it in person, and I told her I would if I had the energy, which I can never predict in advance. It's being held at a nearby hotel but she said there is a walkway connecting the two, so it won't be a problem with my scooter, as long as I'm not too tired.

There's still a lot I need to do, so I'd better end here.

Early Monday morning

2009-10-26T05:53:00.002-04:00

I took a long nap yesterday afternoon, so I guess it's not surprising that I woke up a little before five and couldn't get back to sleep. I came out to the living room so as to let Marty sleep peacefully for as long as possible. I feel good again today, although I'm still getting these exhausting bouts of coughing.

We really have to spend some time today getting ready for the trip and seeing how we're going to organize the enormous amounts of paraphernalia that has to come along with us. I need to check with hospice to make sure everything has been arranged from their end, and I want to call the airline to make sure that there won't be a problem with Marty's ticket (which has an extra "F" in his last name), or that I am carrying a controlled substance (liquid morphine, in a prescription bottle with my name on it). And we have to reserve a station wagon taxi, as I'm sure all our stuff won't fit in a regular taxi.

Sally called from Berkeley yesterday after reading that I was coming to Alternatives--she was really excited that we're going to see each other again. We had an interesting talk about the unhelpful things people say that they seem to think are comforting. When she tells people that she knows her cancer will come back eventually they say things like, "No, it won't," and "You're going to be fine," which is totally discounting her knowledge and her ability to live as fully as she can despite it. Similarly, I hear that I should live for a long time when that's really not what I want at this point--I want to do as many good things as I can, but always with the knowledge that the life force will run out at some point. I think I'm about as at peace with that knowledge as anyone can be, and it feels bad to hear it being totally discounted by someone who seems to think it's being helpful. It's that old elephant in the room again--death, who no one ever wants to acknowledge. But it's there, acknowledged or not, and only gains in power through being taboo.

The Giants were on TV last night, blew a lead and then could have won if Manning pulled one of his last minute touchdown drives, but it didn't work last night and it's not something a team should count on if it wants to be a winning team. Nonetheless, they still lead the division.

It's a little after six and I might just fall asleep again.

I can't explain it...

2009-10-25T08:05:00.002-04:00

I woke up a little while ago and even before opening my eyes, could tell that I was feeling much better. It is so frustrating that I have these awful days, especially yesterday when we had such nice plans for the day. But I guess I should be grateful that it was just the one day.

A comment a reader posted on the last entry (to which I wrote a short comment as well), makes me think about all the ways I have benefited by being in hospice care all this time. The biggest thing is that, rather than cycling between the hospital and home, I am at home surrounded by support, and far more comfortable than I could ever be in the hospital (which is definitely not set up for the comfort of sick people!). The reason why, I think, people are surprised that hospice patients can get outside, and even travel, is because most hospice patients enter in the very final stages of dying. I think there are a lot of reasons for this, mostly centered around the idea of death as the last taboo. No one wants to mention death when talking with, or about, a very sick person--it is the proverbial elephant in the room. And most people's image of hospice is "that place you go to die," when in fact it is so much more than that. So a lot of people are subjected to a lot of unnecessary and expensive treatment that can't help, and can often make the person feel worse, because any mention of "dying" or "hospice" is seen as "giving up." Yet a hundred years ago most people did die at home, with their families around them--this was the norm. Modern medicine has achieved a lot of great things, but it has also medicalized natural processes, like childbirth and dying. Now most people die in hospitals, although studies show a majority of people want to die at home. But because of the taboo, and everyone being careful not to talk about the things that so much need to be talked about, people die alone and isolated and surrounded by machines that beep and buzz--not exactly a peaceful way to die.

My dad always said that he wanted to die by "just going to sleep and not waking up," and hospice made that possible for him. I want the same thing for myself. When I first entered hospice my wish was to live till spring, and now spring and summer are past and I'm still here. I'm ready to die in my mind, but my body just isn't going along.

Disappointment

2009-10-24T18:57:00.002-04:00

We had a nice plan for today, attending a showing of a movie that's a part of the disability film series being put on by the Cambridge Commission on Disabilities, a classic of the disability rights movement--"When Billy Broke His Head and Other Tales of Wonder." But I had a rough night, waking up coughing and gasping for breath several times during the night, and then waking in the morning very weak and short of breath. I dozed on and off into the late morning, then managed to drink some tea but didn't feel like eating. I finally had a chicken salad sandwich in the late afternoon, after asking Marty to make it several hours earlier but then feeling queasy when I thought about eating it.

As happens so often, now that it's evening I'm feeling better and stronger. It's important for me to maintain my energy so we can leave on Wednesday for Omaha. Everything appears to be set; the tickets have been bought by the organizers, and we've spoken with the airlines about disability accommodations. I am able to take my portable oxygen concentrator on board, and they have promised that I can ride my scooter to the door of the plane, and that it will be last loaded and first off, so I will be able to get on it when we deplane. That's how it's supposed to work, anyway--we will see how it goes in practice. In each case, we have to take a commuter plane on the leg that involves Omaha, which probably will require my climbing a few steps into the plane, which I can do if they preboard us and give us enough time so I can do it slowly.

I am really looking forward to this trip. It will be good to be away from the various tensions here, plus I will have a chance to see a number of people that I haven't seen in ages. Our room is in the conference hotel, so I can take part in as much of it as I have the strength for, and then relax in our room where I'll be able to meet with people informally. I asked the hotel for a handicapped accessible room--the best of these have roll in showers, although the more usual arrangement is just extra grab bars, which isn't too helpful for me. I can't take a shower unless I can be sitting down, as I get too tired otherwise.

I'll need to check on Monday to see if hospice has made the necessary arrangements for me to be covered by another hospice program while I am there. Last time (the trip to the Catskills which we never actually took) Lauren arranged everything, but she has been out sick all this week and I hope Louise has been able to get the information she needs to set things up. When Joan, the social worker, was here on Friday she said that she is quite pleased that I am going on this trip, which she thinks will be very good for my morale. I quite agree--I'm so sick of sitting here and staring at the TV, and I don't have the mental energy to read anything more than the newspapers, and my New Yorker and Vanity Fair. I may take a book with me on the trip to see if I can read something light.

I hope I can get some restful sleep tonight.

Consumer-controlled personal assistance services (PAS)

2009-10-22T08:39:00.003-04:00

There is no doubt in my mind but that one of the great achievements of the disability rights movement is the development and funding of a PAS program that enables people with disabilities to hire, train, and (if necessary) fire a PCA, but it is, nonetheless, a very difficult thing to do.

A PCA becomes much more than "just" an employee. He or she becomes intimately involved in the life of the person with a disability. When the prevailing model of "helping" people with disabilities was the medical model, the person with the disability was viewed as the "patient," and the "service system" decided what services that person needed, and then provided them, often in ways that the disabled person found unsatisfactory or worse. So when Ed Roberts and others developed the consumer-controlled PAS model, it was an enormous step forward. The person with the disability was able to shed the role of "patient" and instead was able to participate in the larger community, with PAS providing many of the services necessary to make that possible. The person with the disability, instead of being seen as somehow deficient, instead became the expert on what services were needed and how they should be provided.

In the teaching I've done over the years about this model, I often use the example of getting a shower vs. taking a shower. In the medical model, the shower is scheduled according to the needs of the provider or the institution. The person with a disability is objectified, and the shower is carried out in ways that may be personally humiliating (like getting naked in front of someone who has power over you). The water may not be at the temperature the person would like. The undressing, washing, redressing, and so forth is being "done to."

In contrast, the PAS user decides when he or she wants to shower. The PCA is instructed on personal preferences (water temperature, type of soap, how many towels to use, etc.). Individual needs direct the ways the service is carried out. In both cases, the end result is a clean person, but the method of achieving it is quite different.

So, although I've often lectured and written about how the person with the disability "hires, trains, and (if necessary) fires the PCA," in actual practice it is not at all that simple. The relationship between the PCA and the service user is complex and quite personal, and the decision to fire a PCA will almost certainly lead to emotional pain all around.

The hospice model has many similarities to the disability rights model, in that the dying person is seen as the center of a complex web of services provided by various people (nurse, social worker, chaplain, home health aide, etc.), but always with care and attention to what the dying person wants. When I became too weak to shower by myself I specifically chose not to have that service performed by a PCA, but instead by a home health aide who works for hospice, because it felt more comfortable emotionally. My home health aide, Nancie, is someone I feel very comfortable with, but, at the same time,. when she is showering me there is a certain impersonality that helps me to cope with my sense of loss and inability to care for myself. That's my choice; another person might make a different one. In either case, hospice is there to support me and ensure that I am getting my needs met.

Tired, bored, frustrated

2009-10-19T22:16:00.002-04:00

Yesterday I didn't have the energy to get out of bed. I watched football all day--first the Giants losing their first game of the season, to New Orleans, and then the Patriots blowing out Tennessee--I think the final score of that one was 51-0. When the Pats game came on I was surprised to see snow on the field and asked Marty if it was snowing here--he said it wasn't but about fifteen minutes later the snow started here--first of the season. There wasn't much here but there was quite a bit there.

Today at least I had a little more energy. I have been in the living room most of the day. Tim came for his regular Monday morning visit, then Ann arrived and the three of us talked for awhile about psychiatric rehabilitation and the changes that people are capable of making when they have the right supports, as compared with low expectation programs that infantalize people so that they never become independent.

Nancie arrived about two and I told her I was feeling strong enough to take a shower, which always helps my mood. It feels so good to be clean all over! I didn't sleep much last night because I have been feeling so distraught, but I'm tired now and hoping I will be able to sleep tonight.

It looks like we will be going to Omaha for the Alternatives conference--the guy who's been working on it in Philadelphia called me with flight information, and I should be getting details by tomorrow. I'll need to talk to Lauren about getting hospice coverage for while I'm there, as well as oxygen--I will give her a call tomorrow. I hope Medicare is flexible and will allow me to travel.

It will be good to have a chance to see a lot of people I haven't seen in awhile, and this should make up for not being able to go last year when it was in Buffalo and we were going to drive there. So that's all something to look forward to. There isn't much that's good these days.

Slow, boring days

2009-10-17T17:34:00.002-04:00

Here it is Saturday again, and I am just watching time creep slowly by, with little to distinguish one day from the next. Yesterday Marty suggested that we go out for dinner, just to get out of the house, and I suggested the Tibetan restaurant we went to a few months ago with a group of Marty's friends, which I hadn't expected to like but was quite surprised by, and we had another delicious meal. As always, it was good to get out.

On Friday, we had a meeting with Nancy, the new social worker, and a lot of simmering hostility between Marty and Julie came out into the open. Although this is very painful for me, I think that it's better to get these things out to the point where they can be talked about, and I am hopeful that we will get things to a better point. It's very hard for me to see the people that I care about not getting along, but I know that they both care about me and are trying to do the right thing as they see it. Nancy met with me alone, briefly, and then went upstairs to talk with Julie alone, and we're all going to meet again next week.

I continue to think things would be better if I died soon--I'm just hanging around being unproductive and unhappy and spending money, and I am going to hate it when the weather gets cold and it gets dark earlier and earlier. When I first went into hospice I said that my hope was to live till spring--I certainly had no idea it would be this long. There just doesn't seem to be any point to it.

A night with little sleep

2009-10-14T17:34:00.002-04:00

After being asleep for just a few hours, I woke up around three and couldn't get back to sleep. So I just read my New Yorker and surfed the Web for awhile. At one point Marty woke up and asked why I was awake, which always seems like a silly question ("I'm awake because I can't sleep"). I urged him to get back to sleep and eventually he did. As often happens, I'm actually less drowsy today than I was yesterday after a good night's sleep.

Nancie was here for a couple of hours and Marty asked her if she could cook the potato casserole, which she did, so I know what I'll be eating for the next few days. Ann is here with me now--Marty is out running errands, and then will be back here briefly before going out to a meeting.

After yesterday's attack of the blues, my mood is much better today. I don't know what brings on these mood changes, but I'm just trying to ride them out as best I can. It's so hard to deal with being so weak and so unable to do even the simplest things for myself. I want to get out as much as possible--I hate just sitting here and watching TV to pass the time. I don't know why I'm stronger than I was a few weeks ago, and I'm not even sure it's a good thing. When I thought I was going to die soon, I felt such a sense of peace. But instead of getting weaker, I got stronger. I wish I knew how long this was going to go on, but as Lauren has told me so often, no one knows that.

More tired today than yesterday

2009-10-13T11:58:00.002-04:00

I'm much more short of breath today, as I discovered when I got up to go to the bathroom and had a hard time getting back to bed. I sat on a corner of the bed while Marty rubbed my back gently and eventually helped me back into bed, where I finally caught my breath. Now I'm in the living room, and again it took awhile for me to breathe comfortably. So I'm just planning to stay put and try to be as comfortable as I can.

Marty is out meeting with Marie, and Ann is here with me. He's also going to go grocery shopping, and he is going to cook the potato, ham, and cheese recipe that I enjoy so much. It makes a big trayful that I can eat for the better part of a week (with some green beans, it even makes a balanced meal). The last couple of times I made it with Ann helping me, but that was months ago and I'm much weaker now, so I was delighted when Marty said he would cook it (he can't even eat it, because, although he's far from strictly kosher, he doesn't eat ham, or dishes that mix meat and milk).

I had a good night's sleep last night, sleeping very soundly and I don't think waking up at all during the night. Adding the ten extra milligrams of amitriptyline really seems to have done the trick.

The new social worker

2009-10-12T11:06:00.002-04:00

On Friday, Joan, who has been filling in as the hospice social worker, came with Nancy, who will be the new social worker, and both of them spent some time talking with me, Marty, and Julie, and it was a real clearing of the air. I think I'm going to feel good about working with Nancy (although we jokingly told her that she would have to change her name so as not to get mixed up with the Nancie who is the home health aide--still another name to get things confused).

Nancy also had the papers for me to sign for Medicare so they will pay for my hospice care, effective October 1st. Now I have to figure out which company to sign up for to get the drug benefit, as I still have to pay for my Celebrex, the only one of my medicines not provided by hospice (since it is not related to my primary condition). This means finding out how much I would have to pay for the drug without insurance, and then comparing it with what the various companies would charge. I think this is all doable on the Web, but it's very annoying that it has been set up this way (which was done by Bush to the great financial benefit of drug companies).

Nancy will be coming back on Friday for another session with the three of us, which I hope will lead to clearing up any misunderstandings or tension that might arise. I do much better when things are calm and relaxed.

A busy, active weekend

2009-10-12T07:39:00.005-04:00

Saturday didn't start out too well. I was sitting in the living room pretty early in the morning, when suddenly, in an instant, I went from feeling no pain at all to possibly the most intense headache I have ever had--the whole front of my head felt like it was about to explode. Over the next three hours, I took tylenol, morphine, ativan, and the haldol gel, but only gradually did it subside, and until then I was pretty miserable. That, plus the iffy weather, kind of ruled out the trip to Topsfield, and we decided we would go on Sunday instead. I had wanted to reserve Sunday for watching the Giants (the first time they've been on TV in several weeks), but decided we could tape the game and as long as I didn't know the outcome I could watch it when we got back.

So instead we made a shorter excursion, to Lexington (which is the next town to the north) to the National Heritage Museum (http://www.nationalheritagemuseum.org/), which I'd been to several times but Marty had never been. It's a lovely museum that always has interesting exhibits, and this time they had several about clocks, as well as one on the history of Masons in the U.S. (the museum was started by Masons), and we spent several pleasant hours going through it. We decided it would be good to keep an eye on when the exhibits change as it certainly would be worth going again, especially since it it nearby and free.

We had hoped to get out of the house on Sunday by nine thirty, but it was closer to ten thirty when we left, with all our various paraphernalia. When Marty filled the portable oxygen machine from the big tank it froze up (which happens sometimes--I think it's certain weather conditions) and no oxygen was coming out, but I was sure that it would unfreeze during the ride, and I would be fine since I would just be sitting and not exerting, and in fact that's just what happened, as it finally started giving that reassuring "puff" to let me know that it was working. Meanwhile, once we got off the highway on the one lane road to the fairgrounds, we got stuck in an enormous traffic jam that just crept along and we weren't sure we were going to be able to park once we did get there. Marty and I started singing old camp songs to pass the time, which had us all in hysterical laughter, especially when we started "arguing" over the lyrics to songs we barely remembered and hadn't sung in thirty or forty years!

When we finally got to the entrance to the parking lot there were cops just waving people to continue on (presumably to another lot), but when we showed our handicapped placard they waved us into the lot and we found a space quite near the gate. Because Donna was in a wheelchair and I was in my scooter, we got in free, and Marty "complained" because they didn't accord his cane the same privileges and he had to pay the admission fee.

There was lots to see and Marty and Donna (who had attended many previous fairs there) had a good idea of what they wanted to see first, and I was quite content with whatever we did. There was, of course, loads of junk food, but when we ate I got something relatively healthful (a turkey dinner with stuffing, gravy, potatoes, green beans, and cranberry sauce). I had brought along a bottle of my iced green tea since there seldom are any unsweetened beverages. I was feeling good and didn't get tired, as I expected.

The main attraction was the famous circus family, the Flying Wallendas. We asked about wheelchair seating and were told just to go in and park in the front of the first row of bleacher seats. We were afraid we were blocking people's view but were told it was no problem, as everybody would be looking up. There were some big wind gusts and it was announced that wind was the main enemy of jugglers and tightrope walkers, but they managed to do all of their main tricks, although the jugglers did drop a few things. They not only walked the tightrope, but also rode bicycles on it, in one case with several people balanced on top of them.

There was also a petting zoo with lots of baby animals, an enormous sand sculpture, the largest pumpkin (in it's own little glassed-in enclosure), a flower show, and lots of other stuff, ending with a ride on a carousel. I had talked about riding the ferris wheel as well, but decided not to. By that time, my oxygen machine had stopped puffing, and we decided it was time to get back to the car (where we had the portable concentrator), but we did stop to get some apple crisp with ice cream for dessert.

The ride home went quickly (without the traffic jam), and I was surprised at how good I felt once we were home. Marty got me settled in the living room with the tape rewound, while he went to take Donna home, and I got to watch the Giants absolutely blow away the Oakland Raiders 44 to 7. The game was so lopsided that the network shifted away to another game in the third quarter, so I didn't get to enjoy the whole thing, but I was really happy as the Giants are now five games into the season with five wins. This is definitely the way to start a season!

Marty got back a little after ten and we watched TV for awhile and then went to bed. We both were quite pleased with how good I was feeling, not weak at all, or extraordinarily tired, but just pleasantly worn out from a long, enjoyable day.

Why?

2009-10-08T17:46:00.001-04:00

There are no answers to these questions. Why does it take so long to die? Why am I growing weaker so slowly? Why is every little thing such a struggle? Why can't I just go to sleep and not wake up?

People get upset when they hear me talking this way. I'm supposed to keep feeling "optimistic" and not give in to "depression," but I don't think these labels apply. To me, an "optimistic" outcome is one that will get me out of this limbo, and I am not depressed but am quite realistically evaluating my situation. I'm bored, and can distract myself only to a limited degree by reading or watching TV. I still enjoy visiting with people more than just about anything else. I had an e-mail from Dorothy that Laura won't be able to come tomorrow but Dorothy will be coming, and Laura will visit another time. Tim was here for a few hours today, which was enjoyable.

I didn't get a good night's sleep last night because Marty had a restless night and spent most of the night in the study. But each time I woke up I was able to get back to sleep after reading for five minutes or so. I've dozed a little bit during the day but am hoping for a solid night's sleep tonight, as the increased dose of amitriptyline usually does the trick.

Marty is going to get Donna tomorrow and on Saturday, weather permitting (and my having sufficient energy) we'll be going to the Topsfield Fair (www.topsfieldfair.org). which I hope will be fun. I don't mind getting tired from doing something interesting--in fact, I welcome it.

Weak and discouraged

2009-10-07T13:02:00.000-04:00

It is so frustrating to feel myself getting weaker and weaker. There's so little I can do by myself and when I try I realize quickly that it is beyond my abilities, and it takes longer and longer to catch my breath. I now brush my teeth in bed, using one of those little curved basins, as standing up at the sink without holding on just wears me out. I really don't see the point in going on this way, and I wish things would just be over with.

But, at the same time, there are still things to look forward to. I got an e-mail the other day from Joseph and Susan Rogers, who are organizing this year's Alternatives conference (http://alternatives2009.org) in Omaha, saying that I am receiving an award at the October 29th luncheon, and wanting to know if I could attend in person, or else send a video or a letter. I asked them to look into the logistics of the airline transporting me, my scooter, my oxygen, and Marty as my PCA, and to let us know what could be arranged. It would be great to be able to go, especially since we had planned to go to last year's conference, in Buffalo, which we would have driven to (making an overnight stop halfway), but then I got too weak to stand up and ended up in the hospital on IV antibiotics. That was my last hospitalization, which ended up with the referral to hospice. But I had told so many people that I would be seeing them at Alternatives so it was a big disappointment all around.

Barbara, the physical therapist, was here earlier, and did her usual laying on of hands which I find relaxing and energizing, and then Mindy, my volunteer, came, and we had a nice chat about all kinds of things. I had accidentally told Tim to come at the same time, so he stopped by and arranged to come tomorrow instead. And on Friday Laura and Dorothy are coming for a visit.

I find myself saying so many of the things my Dad used to say in his final months--he used to talk about feeling weary, and now I know just what he meant. Everything, even the most mundane activity, like going to the bathroom, becomes a major production. When someone would point out some nice upcoming activity he would say "hallelujah" or "whoop-de-doo," hating to be diverted with something that felt so minor in the grand scheme of things. And although he was eighty four when he died, and I'm not quite sixty five (my birthday is October 30th), I know just what he meant when he would say, "I've lived too long." I always planned to live to a ripe old age, but that was only if it was an active, busy life--the life I used to lead, the life I loved.

A busy weekend

2009-10-05T07:59:00.000-04:00

As scheduled, the guy (Eric) showed up promptly at one on Saturday to do the filming, and this time there was no construction noise. It took him about half an hour to get all his equipment set up, and then he filmed for about two hours (although I know only a few minutes will make it into the final documentary). He is preparing this for PBS, on the disability rights' movement generally, but he's very aware that psychiatric disabilities need to be included. It hasn't yet been determined which PBS program it will be shown on, but at this point he thinks they are leaning toward "American Experience"'; unfortunately for me, not till some time in 2010. Ann was sitting here watching, and occasionally passed him a note with a good question to ask. Eric found out about me (and Dan) through Fred Fay (http://en.wikipedia.org/wiki/Fred_Fay), an amazing disability activist who lives nearby (Concord, Massachusetts) and who does an incredible amount of work from his bed despite being almost totally paralyzed.

On Sunday, I watched the Patriots' game on TV (the Giant game was not shown)--it was a good day for football, as both the Patriots and the Giants won. The Giants have now started their season with four straight wins and no losses. I hope they will be on TV next Sunday, as they will not be playing opposite the Patriots.

Later in the evening David Oaks called--he was staying in a motel very near here, but he managed to get quite lost trying to follow Googlemaps directions (which I find vastly inferior to Mapquest--when we went to Hopkinton last week Googlemaps had us turn onto a certain route number but didn't specify north or south!). However, he called several times and I was able to guide him here. We had a nice talk--it's always good to get away from focusing on my illness and talk about the state of the movement and what we need to do to get our issues out there in the public. David is still (quite justifiably) furious about how NBC misled him with the program they did which (despite their promises) "balanced" the story with one about a "psychotic killer" who murdered his mother after going off his medication.

On Sunday evening we went to Dan's for a small dinner party with Dan and Tish (his wife), David, Cathy Levin, Deborah Delman, and a few other people. I got very tired climbing the front stairs to Dan's house, and had to sit and rest for awhile before going into the dining room. In the middle of dinner I got too tired to sit and had to go lie down on the couch, and fell asleep for awhile. But I got up for dessert--three different desserts. One of the women had brought an Iranian pudding flavored with rosewater. Marty and I had brought half of the Junior's cheesecake he surprised me with the other day. And Cathy, who had ascertained from me that my favorite result was "anything chocolate" had brought a fabulous chocolate mousse cake. Of course, I had to have some of all three!

One thing I find very frustrating is that even though people can see how frail I am they insist on talking about how I am going to get better and live for a long time. I'm the only one, it sometimes seems, who is frankly facing the fact that I am dying. Marty says that it's an indication of how much people love me--that they want me to be around for a while and can't imagine me not being here.

Donna was here for the weekend and she and Marty and Judy worked on setting up a scheduling system so there will be people here only when we need them. I'm beginning to have to keep a close eye on my money and my biggest expense right now is PCAs. When we got back from Dan's Marty took Donna home and Julie came downstairs to sit with me. We talked some more about the money situation and she made very clear that her main concern is for me and that I not spend any money I don't need to. This feels really good as I don't feel as able to protect my own interests as I should, so I really do need her to be doing this for me. After she had been here for awhile I fell asleep and she went upstairs; I slept for awhile and came awake just as Marty arrived home, so I had a mango bar and we talked for awhile and then I fell asleep again and slept all night. The increase in amitriptyline really seems to be doing the job!

One thing I forgot to write about last week is the beautiful silver flower pin Laura gave me when she visited. After September 11, 2001, when she and I were stranded in Budapest, one thing we did to try to keep our heads on straight was a lot of shopping, and we discovered a shared love of jewelry. One of the things I bought was a silver pin shaped like a daffodil, which, unfortunately, I lost when I went to Australia a few years ago. I've done some Web searching trying to find something similar, but have never been able to, but Laura found a pin in a very similar style shaped like a dogwood, which is not only beautiful, but has such great symbolic value.

Nancy is here now, and I'm trying to get up the energy to take a shower.

A sleepy day

2009-10-02T22:32:00.000-04:00

Yesterday, Lauren upped my amitriptyline from 30 to 40 milligrams, to see if it would help me sleep, and not only did I get a good night's sleep, but I've been drifting in and out of sleep all day. Feeling as weak and out of it as I do, this is just as good a way to pass the time as any.

I had an appointment with a film crew who are making a documentary for PBS about the disability rights movement, but when they showed up at one o'clock they decided they couldn't film because of the construction noise from the house across the street that is being remodeled. They went to talk to the workmen, who said that they wouldn't be working tomorrow, so it has been rescheduled to be shot then. Talking about this stuff always energizes me, so I'm looking forward to it. And on Sunday we're scheduled to go to Dan's for a small dinner party--David Oaks will be in town--and if I'm not feeling strong enough to get there it will be moved here.

But today I just feel very blue and useless and sick and tired of going on and on like this. My head hurts, I'm weak, it's hard to breathe, and I just go from the bed to the chair and there just doesn't seem to be any point to it any more.

Marty surprised me with a cheesecake he had mail ordered from Junior's in Brooklyn (www.juniorscheesecake.com) --the real New York cheesecake we're always talking about. We're trying to decide whether to bring it on Sunday or just eat it all ourselves! The only pleasure I seem to find these days is in eating all kinds of fattening goodies.

I haven't felt much like writing

2009-10-01T23:11:00.000-04:00

I haven't actually felt like doing much of anything. I'm tired and weak and everything is such an effort. My physical condition continues to decline, and I just don't understand why I'm hanging on here, feeling so lousy and miserable.

Last night was one of those nights when I just didn't want to go to sleep, and I was watching TV and puttering around on the computer until after four. So naturally today I was really out of it, and was dozing through a lot of the afternoon.

It's a bit after eleven now and I'm going to put out the light in a few minutes and see if I can sleep. Earlier today, Marty, Julie, and I had a difficult discussion with Joan, the interim social worker, about money and the future and Marty's plans. I know that Julie wants him to move out within some reasonable time after I die, so she can rent the apartment, and this makes him feel disrespected and unappreciated. Although I appeared to be asleep during much of this conversation, I was actually following it, and felt very much put in the middle and being tugged in opposite directions. I just want everyone to get along and to recapture that peaceful feeling I had a few weeks ago when I thought things were reaching the end point.

I can see only negatives in continuing to live--using up my money, creating more tension between Marty and Julie, and experiencing physical and emotional misery.

At last, a good day

2009-09-26T19:01:00.000-04:00

Yesterday was awful. I had a sleepless night, so I was exhausted, but I couldn't nap and just started feeling worse and worse. On Thursday evening, I had gone to the bathroom, and had such a hard time getting back to bed that I was terrified of trying to get up. Although it's only a few steps, I just barely made it to the corner of the bed, where I sat, gasping, for several minutes before I was able to get fully back to bed.

So on Friday I just stayed in bed all day, not even trying to make it to the bathroom. Nancie was here, and she gave me a wonderful sponge bath (it was unseasonably hot on Thursday and I had gotten very sweaty). Then she rubbed me down with lotion, and when she was done I felt really good.

But in the evening things really deteriorated. I started having a weird feeling that I was unable to put into words--the best I could do was to say that I felt that everything was all scrambled inside my head, but I'm not sure if that conveys any sense of the experience. So I spent several hours in total misery. Julie put some of the haldol gel on my arm, and I took some morphine and some ativan, but it didn't change the feeling, and not being able to put it into words somehow made it worse.

I guess it was mostly exhaustion, because I slept very soundly and when I woke up that feeling was gone. So we decided that we could make it to the M-POWER (www.m-power.org) picnic. Taking everything very slowly, I first tried to see if I could make it to the bathroom and back, which went well, so then I slowly got dressed. Marty brushed my hair for me. The weather was predicted to be a bit cooler, so I took a heavy sweater with me (which I needed when I was sitting in the shade, but in the sun it was delightful).

Hopkinton is the town where the Boston Marathon starts, and it was a lovely drive to the state park where the picnic was being held. There were about sixty or seventy people there, who have become involved in advocacy and were feeling strong and vocal. Just last week, a number of members had gone to the State House to testify in favor of three bills they are supporting: one that would strengthen the Five Fundamental Rights law that the organization worked on for many years, one that would create a commission to study the establishment of peer-run crisis services, and one that would establish a right to daily access to fresh air for people in psychiatric wards and hospitals.

They have decided to give an annual Judi Chamberlin award, of which I am the first recipient, and I was presented with a beautiful heavy blue glass pedestal topped with a large, free form silver star, as well as a necklace with a blue heart and a silver goddess figure. I spoke briefly, first about the parallels I have found between hospice and how we envision a helpful mental health system, with the patient at the center and the various helpers working to help the patient achieve his or her goals. Then I talked about the founding of M-POWER, and how there was agreement at the founding meeting on all the issues, but then everything almost fell apart over choosing a name. Some people wanted the words "mental illness," while others objected to the term, and similarly for "consumer," "survivor," and several other terms. While the voting and arguing was going on, I wrote down the word "empower" (which was strongly liked by almost everyone) and tried to see if I could come up with an acronym. When I suggested we call the organization M-POWER, standing for Massachusetts People/Patients Organizing for Wellness, Empowerment, and Rights, we finally had a name that everyone could agree with.

I've been resting since we got home, but I don't feel exhausted, just tired from the amount of exertion, and I'm hoping to get another good night's sleep tonight.

So tired of being tired

2009-09-24T16:36:00.000-04:00

I am so tired and short of breath today that I don't want to do anything. I was feeling weak yesterday, too, but having Dorothy and Laura come for a visit was energizing. I was still in bed when they arrived, but eventually they helped me into the living room. They brought great treats--a beautiful bouquet of autumn-toned flowers, pea soup, croissants, and fabulous cookies. It was great to sit and talk with them. Laura brought the award plaque from NYAPRS, which she added to the display of all my awards that Marty and Donna set up on the living room radiator a few weeks ago. They said that everyone at NYAPRS was talking about me and missing me--it would have been so great if we had been able to make it there.

I took a long nap this morning--not deep sleep, but just lightly drowsing. I had asked Ann to move my chair onto the porch, knowing I was too weak to go all the way to the living room (I had a hard time just getting back from the bathroom), but ended up just falling asleep in bed. Now I've been awake for awhile, and thinking about sleeping again.

I don't have much of an appetite--Marty and Donna had stopped at a KFC yesterday (he had gone down there to help her with her car, which had broken down), so I had two biscuits for breakfast. I wanted some chicken salad a little while ago, but Laurel looked and we're all out, so Marty said he would get some. He's been gone all day--first a meeting, then a dermatology appointment so they can look at his leg, and now he's picking up some groceries, and also some diapers that fit.

The saga of the diapers...sigh... The last batch Lauren had ordered for me were too big, so they leaked, and now she ordered smaller ones and they are too small! I've been using some that Marty bought at CVS (which were the right size), so he's going to pick up some more, and meanwhile Lauren is going to order the kind that have tabs at the side, so they can be adjusted, rather than the pull-ups. Such are the mundane details of being sick.

I hope I feel strong enough to go to the M-POWER picnic on Saturday, where I am getting still another award--the first annual Judi Chamberlin Award.

Very weak again

2009-09-22T14:48:00.000-04:00

The day started out with me feeling very short of breath again. I did a nebulizer treatment pretty early, but it didn't help, and later I got into a big coughing fit, which hasn't happened in awhile. I also woke up too early, so was very sleepy, and I think at some point in the mid-morning I napped for awhile.

I've taken ativan, morphine, and the haldol gel, so at least I am feeling pleasantly doped up, which is far superior to feeling agitated (not nearly as agitated as a few days ago, but still very unpleasant). I'm hoping to fall asleep again.

I'm so glad I had a shower yesterday. I just have to seize those moments when I feel up to doing something (taking a shower, getting out of the house, or whatever)--there's no point in making plans for "tomorrow," because I never have any idea what tomorrow may bring.

It would be great if I feel strong enough tomorrow to enjoy lunch with Dorothy and Laura, but I will just take each thing as it comes. Whatever happens, we'll have a good visit with lots of love going around.

Plans are also underway for David Oaks, who will be in Boston at the beginning of October. Dan is hosting a small dinner party at his house, to which Marty and I are invited, but if I'm not feeling strong enough to go out it will be moved here instead.

I have so many wonderful friends, and it's so good when people tell me what a difference I have made in their life.

Getting stronger again

2009-09-21T21:52:00.001-04:00

Yesterday I was very short of breath, even just staying in bed, although I did eventually make it into the living room. Marty wanted me to go out with him (he had to bring Donna home), but I was feeling too tired to try, so Anne stayed with me while I dozed in my chair. I also got to watch two football games--the Patriots lost to the Jets, which was disappointing, but much more exciting was the Giants beating Dallas in the final seconds, so they are now 2-0, both victories against division rivals--what a good start to the season!

Today I'm feeling less short of breath at rest, so it was easier to get into the living room, and when Nancie arrived in the mid-afternoon she suggested giving me a shower, and after giving it a little thought I decided I could do it. I'm not sure when I had my last shower, but it's certainly been awhile, and it felt so good to let the water cascade over me, to have my hair washed, and even to shave my legs. I spent the rest of the afternoon relaxing in my chair, but haven't taken any naps today, so I'm hoping to sleep well during the night.

Marty was out all afternoon--he had to see his podiatrist, who said that his foot is looking better, but I'm worried about his legs, for which he needs to see the dermatologist.

My appetite has come back and I've had three real meals today. A week ago I was so sure my systems were shutting down; now I seem to be bouncing back. I have no explanation for it--I'm not even sure it's what I want, but, as always, I'm just trying to go with the flow and take each thing as it comes.

Wednesday Laura and Dorothy are coming for a visit and bringing lunch--that's something to look forward to.

Two very different days

2009-09-19T11:51:00.000-04:00

Friday was an awful day. I hadn't slept and was just ragged--I was so agitated I felt like I was jumping out of my skin. Between Marty, Julie, and Louise suggesting different medicines, I had adivan, haldol gel (which is rubbed onto my arm and absorbed through the skin), and morphine, and eventually I calmed down, but I knew how much I needed to sleep and just couldn't get there. But at least feeling calm was so much better than the agitation.

I was able to make it into the living room, which felt so good, and I kept hoping to just drift off, but it wasn't happening. I was able to eat another small portion of bean and barley soup, and after Marty got back from shopping for Rosh Hashanah goodies, I had two small pieces of apple babka (a plain cake with pieces of apple cooked into it). In the evening, Marty helped me back into bed, and I started dozing through the evening before falling to sleep for good and getting maybe about six solid hours, followed by a few more hours of dozing.

So when I woke up for good this morning I felt better than I have in quite awhile. I had a cup of tea and half of a chicken salad sandwich on whole wheat toast (not exactly breakfast food, but that's what I was craving), and it tasted wonderful. Now I'm back in the living room, feeling relaxed and marveling over how much stronger I am. I have no explanation for any of this, but I'm just taking each thing as it comes.

Yesterday (or was it Thursday?) I got a call from the NYAPRS conference so that I could hear Laura Prescott presenting my lifetime achievement award, and the cheers from the crowd. That felt so wonderful!

Feeling stronger today

2009-09-17T14:40:00.000-04:00

I didn't sleep during the day yesterday, although I expected to, and I didn't sleep through the night, although I did get some sleep. But at some point during the night, I realized I was feeling stronger, and when Marty woke at about eight, I told him I wanted to try to drink a cup of tea. Yesterday I wasn't able to swallow liquids and was just sucking on ice chips, but this morning I drank a full mug of tea with great pleasure, and in about eleven o'clock I ate a very small portion of delicious bean and barley soup which Marty had brought me from the kosher deli in Brookline. So far, I haven't wanted to eat anything else, but the soup is sitting well and I think I will get stronger if I'm able to eat. This was the first food I've eaten since dinner on Sunday.

Yesterday I couldn't make it out of bed, but today I went first to the bathroom (not grabbing onto things as I have been the last few times) The bathroom is just a few steps, but it feels like such a long distance. Then a bit later I was able to walk, hanging onto Marty's arm, into the living room and into my chair. Yesterday this wasn't even a possibility.

I will take each day as it comes. Right now I am hopeful that I'll continue to feel stronger and will want to eat, but I will accept whatever happens, and will keep all of you posted on how things are going. Thank you all for your love and support.

Many changes

2009-09-16T16:41:00.000-04:00

To start with, Sunday was a glorious day. Because Marty had a meeting in the morning, we knew we were going to miss part of the concert, but decided that it was still worth going. On our way to Plymouth, we stopped to pick up Donna, and then continued south toward Plymouth. The concert was held in an upscale development, on what they call the Village Green. We tried to get to the handicapped parking area, but were told by a guy directing traffic that it was full. But then another guy came over and said we could squeeze in behind the last car, right on one side of the Green. There were lots of people, but from the car even I was able to walk to an open space where we set up our chairs (two of those great collapsible canvas chairs that we borrowed from Julie and Jim, and Donna in her wheelchair). We couldn't see the stage, but we could hear the music. We had missed the first two groups, but heard the last two, a jazz combo and then Deborah Henson-Conant, who plays electric harp and who is a particular favorite of Marty's and Donna's, and whom I have been to see twice before. She opened with a hilarious semi-spoken, semi-sung account of hearing someone play "blues harp" and falling in love with it, asking her parents for a blues harp for her birthday, and being presented with a harp, which was not at all what she was expecting!

All this time I was glorying at sitting outside in the sunshine, letting music wash over me, enjoying being outside after so many days in the house, and feeling better than I had in days. I was weak and tired (it took all my energy to get from the car to where we set up our chairs), but once I was there I was able to relax and feel as good as I've felt in a long time. Being in the sun is so important to me, so I am so especially glad to have had this opportunity.

The concert ended promptly at five, and there were some dark, threatening clouds, so we decided to get back to the car, rather than sitting and waiting for the crowds to thin (our first plan). I had to go to the bathroom pretty badly and was trying to do it without having Marty set up the scooter, which is getting harder and harder for him. So we stopped at rather pretentiously named The Market. Marty went in and came out riding in a motorized cart, which I got into and drove through the store to the bathrooms, which were way in the back. On the way out, I managed to get the cart wedged in (it was a narrow place with a big cart and minimal turning room), so Marty had to direct me and I proved not very good at taking directions! As it turned out, it didn't rain, and the black clouds soon subsided.

We decided to stop for dinner in Plymouth. My stomach was feeling a bit iffy, so I had a bowl of clam chowder (I always crave creamy things when my stomach is upset), and then some crab cakes which weren't very good, so I just picked at them. Oddly, this may turn out to be my last meal.

Monday was a pretty horrible day. I was expecting to be exhausted, but I wasn't expecting things to get as awful as they got, with an anxiety attack and episodes of horrible pain. I've had this pain before--a sudden onset of intense pain in my jaw, which quickly moves into my upper chest and feels like an elephant standing on it. Because it is so intense and it's been several months since my last episode, we all forgot that it is actually a very unusual presentation of gas! So I was taking morphine, and a gel that is rubbed into my arm that is supposed to relieve anxiety, and eventually I drifted into a half-awake reverie state that was far superior to being in pain, but still very strange.

The badness actually started at two A.M. We didn't get to sleep until after midnight, so when I woke at two with a horrible anxiety attack I didn't want to wake Marty. I've never had one before but I knew exactly what it was--that it wasn't anything physical, but just total, overwhelming dread. I sat on the edge of the bed for awhile, and then eventually sat up against some pillows and watched TV (which I know doesn't wake Marty). I think I slept a little, but at five I decided I probably could sleep for real, so turned off the TV and lay down. It lasted for about thirty seconds, and the dread hit again, hard. At that point I did wake Marty, and he worked on calming me down. Memories are a bit foggy, but at some point I did make it into the living room and into my chair, and it was there that the pain hit, so that I was screaming in pain just as Laurel arrived, who quickly sized up the situation and told Marty to give me more pain medicine, even though it was "too soon" according to the dosage schedules.

Eventually, in the evening, I did fall asleep in the chair, trying to watch TV, but not able to stay awake. I was trying to watch the Patriots' game (football, for you non-sports fans), but was mostly asleep, despite the fact that it was a very exciting game and I was trying my best to stay awake at that point (near the end, where it got very exciting). I called for Marty, who was in the bedroom, and asked him to help me get back to bed. I tried to stand up, but the chair was stuck to my bottom so I had to sit down again. Maybe I tried to stand up too fast the second time, but for whatever reason, I suddenly found myself sitting on the floor with no idea how I had gotten there, and no idea of how I was going to get up again. Marty called Julie and Jim, who came downstairs, but I didn't want anyone to try lifting me (my body just telling me it was a bad idea). Marty put a dining room chair next to me and eventually I was able to pull myself into it. I sat for awhile and then walked, holding onto Julie, back to bed.

Earlier, when I was dealing with that horrible pain, I did finally remember that what I needed was gas medicine, which, miraculously, after all the heavy duty painkillers, was what did the trick. This was actually put to the test the next day, when I began to have the pain again and short-circuited it by chewing a few Gas-X tablets!

It was wonderful that I slept soundly through the night. I had been scared of another anxiety attack, but instead had the best, most sound sleep I'd had in awhile. So Tuesday was a pretty good day--I was very tired, but not hurting anywhere and not in pain, except for a few onsets of the gas pain, which never developed into anything because now we know what they are and how to deal with them. We were talking about the conference in New York, and Marty was determined to get me there. So a lot of Tuesday was taken up with figuring out all the things we needed. I called Lauren, who spent a few hours locating a nearby hospice (in Kingston, New York) that could follow me while I was away, plus lots of other logistical things. Laurel and Judy packed my suitcase, and there was a hilarious episode of finding someone who could iron a blouse for me (I have very few things that need to be ironed, but this blouse is one, and it's one of the few pieces of clothing I have that fit my expanded size). Judy finally said she could do it (Laurel has only one usable hand since her auto accident), and she discovered she hadn't lost a skill she'd learned in childhood!

The one thing that had really changed is that I have totally lost my appetite. All I wanted was liquid (to moisten my mouth, which stayed dry no matter how much I drank), and mango bars, and ice chips. At one point, I think Sunday night, I said wistfully that the one good thing about the hospital is that they have ice chips, Julie said that she had ice chips, and so she's been bringing down a steady supply. But the thought of eating has become totally repugnant. I don't even want to drink, so I've been keeping my mouth moist with the ice chips, mango bars, and Life Savers. Lauren has ordered some mouth swabs for me.

We woke up this morning still planning to try to go on the trip, but when I realized I wasn't hungry at all (and my blood pressure was a ridiculously low 76 over something), I decided I was too weak, and was just going to keep getting weaker if I wasn't eating. I talked a lot with Julie and Marty, not just about cancelling the trip, but about whether this was really the beginning of the end. It seems to me that if I don't want to eat, it may be a sign of systems shutting down, and my feeling is that right now my stomach is just going to fight any attempt to put food into it. I'm going to listen to my body and will certainly eat if I feel hunger, but right now I just want to keep my mouth moist, and be comfortable.

The important thing is that I feel totally at peace. I've had long talks with Julie and Marty, and Lauren was here and we talked some more, and we are all focused on making sure that my wishes are followed, and that I remain comfortable. I will try to write more if I can, but may dictate an entry to Marty if I can't.

This blog continues to be important to me, and I value all my wonderful readers.

Feeling better and heading out

2009-09-13T11:38:00.000-04:00

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

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

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

So many weird feelings

2009-09-12T18:36:00.000-04:00

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

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

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

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

Tired in body, tired in mind

2009-09-10T16:00:00.000-04:00

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

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

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

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

Mysterious pain

2009-09-08T17:02:00.000-04:00

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

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

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

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

I'd probably feel better if I could sleep.

Exhaustion and pain

2009-09-07T20:05:00.000-04:00

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

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

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

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

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

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

Another spaced out day

2009-09-02T18:35:00.000-04:00

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

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

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

A better way of handling feeling rotten

2009-09-01T16:08:00.001-04:00

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

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

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

I think I'm ready to drift off again.

Another rough day

2009-08-31T20:33:00.000-04:00

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.

I don't know why I'm so tired

2009-08-29T17:10:00.000-04:00

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!

Conserving and expending energy

2009-08-27T21:43:00.000-04:00

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.

More about the celebration

2009-08-24T07:27:00.000-04:00

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) (http://www.narpa.org/). 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.

It's hard to know where to begin

2009-08-21T16:11:00.000-04:00

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 (http://wnusp.rafus.dk/).

The day before the big day

2009-08-19T17:15:00.000-04:00

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.

The good days continue

2009-08-17T16:13:00.000-04:00

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 (http://www.boston.com/bostonglobe/editorial_opinion/letters/articles/2009/08/17/fear_mongering_stands_in_way_of_vital_counseling/). 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.

Good days all in a row

2009-08-16T13:13:00.000-04:00

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(http://vernon.reinsdeli.com/ordereze/default.aspx), 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.

Good things

2009-08-14T19:04:00.000-04:00

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.

What goes down must come up

2009-08-12T12:02:00.000-04:00

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.

A thoroughly miserable day

2009-08-10T06:46:00.000-04:00

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.

Getting everyone on the same page

2009-08-07T06:52:00.001-04:00

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.

Things are coming together

2009-08-05T17:22:00.000-04:00

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.

A little better, a little stronger

2009-08-04T15:03:00.000-04:00

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.

A bad day, then a better one

2009-08-03T19:01:00.000-04:00

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!

Slowly getting weaker

2009-08-01T09:25:00.000-04:00

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.

Exertion and coughing

2009-07-30T22:23:00.000-04:00

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.

Nothing much happening

2009-07-29T18:43:00.000-04:00

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.

Sick and tired and frustrated and...

2009-07-28T11:33:00.000-04:00

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.

I hate this damn disease!

2009-07-25T17:06:00.000-04:00

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!

More ups and downs

2009-07-24T12:35:00.000-04:00

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.

Another lost day

2009-07-23T12:17:00.000-04:00

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.

Invitation to Judi's Celebration

2009-07-22T12:08:00.000-04:00

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

Just like the Marx Brothers!

2009-07-20T16:29:00.000-04:00

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.

A much better day

2009-07-19T19:26:00.001-04:00

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.