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.