Regaining strength

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

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?

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"

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

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

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

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

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

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

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

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

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

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

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...

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

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

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

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

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?

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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.