Thursday, April 30, 2009

A very tired day

I've been exhausted all day. I was glad that Nancy came about noon (as I was finally coming to the end of a couple of hours of coughing, which was wearing me out), and, as usual, we talked about all kinds of things. I told her that in some ways I feel ready to die, while in others I still have unfinished business. It seems like I'm going to be around for awhile, and I'm not sure how I feel about that. I'm hoping that when Florence gets here, and with the weather getting nicer, we'll get out some and maybe I can regain a little enthusiasm. Right now I can't work up much interest in anything.

There will be a lot of people here tomorrow. Ann is coming in the morning, then Kathy will be here (with the Reiki practitioner), and then in the mid-afternoon Susan. Maybe we can tackle some of the stuff that's been piling up here. There's laundry that needs to be done, and getting the office/guest room ready. Julie is suggesting that Florence sleep upstairs in Evelyn's room (and Ev will sleep down here), so we'll have to sort that out.

It's a little after nine, Marty is out (he said he'd be back around ten), and maybe I should just go to sleep. I'm bored, I'm tired, I'm frustrated. I'm not sure how I'm going to get out of this emotional slump.

A rough morning

I have been coughing up a storm this morning, and it's wearing me out. I'm exhausted, and it's still morning. Marty is here--I think he'll be here all day. Nancy, the chaplain, just called, and she'll be over in a little while. Talking with her is always good.

I'm back to feeling really weak again. I just got up to go to the bathroom and when I got back to bed I just collapsed in a heap and was too tired to get myself back into a sitting position--I had to call Marty to help pull me back up. Kathy wants me to sit up as much as possible as that helps my breathing.

Last week there was an article in the New York Times food section about biscuits, and since then I've been obsessed with biscuits. I did a Web search to see if the regional brand of biscuits mentioned in the article were available by mail order, but couldn't find anything. So yesterday I called Marty and told him I was going to ask him a question that would shock him--I asked if he would be anywhere near a Kentucky Fried Chicken (he knows how much I hate KFC). But I explained that they have biscuits, and asked if he could pick some up. So this morning I had two biscuits slathered with butter. They're not the best biscuits (they have a bit of an aftertaste), but they eased the craving. I'm sure Popeye's biscuits are better but there are only a few of them around here (one in Kenmore Square, where it's impossible to park). So if any readers know a source of good biscuits, pass the information along!

Kathy called yesterday and said that she would be coming tomorrow, along with the Reiki practitioner (whose name I will finally learn). And I'm also getting a new hospice volunteer, Joe, who is supposed to call me and arrange a time to visit.

I really need distraction right now.

Wednesday, April 29, 2009

A little miracle

I didn't get a huge amount of sleep last night, maybe six hours (and despite several tries and being so exhausted, wasn't able to nap at all during the day yesterday), but when I woke up at around seven I could tell that I was feeling much better. I have a lot more strength and have already been out of bed several times. I still don't have much of an appetite, but I had some tea and a banana so that I had something in my stomach and could take all my meds.

It looks like I will be alone a good part of today, but unlike yesterday, I think I can handle it. Susan won't be here again until Friday, and Ann may or may not be able to come late in the afternoon. Marty has a bunch of errands to run and has a meeting tonight.

I had my first acupuncture treatment from Anne, my new acupuncturist (and neighbor), and, as always, the treatment made me feel wonderfully relaxed. I was looking forward to my massage tomorrow, but this morning there was an e-mail from Lisa (who seems to be having an incredible run of bad luck) that she has the chicken pox! So she has cancelled tomorrow's session. Kathy is still working on getting the Reiki person here some time this week.

Of course, feeling better means my mood has improved as well. Yesterday all I could think of was that things would just keep going downhill, but today I feel a lot more hopeful. I guess things are just going to continue this course of unpredictable ups and downs, and I just have to ride the roller coaster. I can't get off--and I hate roller coasters!

Tuesday, April 28, 2009

Feeling scared

I woke up around six and read for a little while before falling back to sleep. When I woke up again I got one of those scary pains that starts in my mouth and goes down into my chest. I know from experience this is gas, but it is so intense it scares me anyhow. It lasted only a few minutes, but it left me feeling awful in an impossible to define way. I'm back to having a lot of heavy congestion in my chest, I'm very weak, and I can just feel that things are getting worse. Marty was very comforting, holding my hand and reassuring me.

Julie came in to see how I was doing. She has been really helpful and concerned, and I can see now that her blow-up of the other day was just a reflection of her high stress level, plus the fact that sick people really aren't the easiest people to be around. (In addition, she has had an ear infection for weeks that hasn't cleared up despite repeated courses of antibiotics.) I asked her to pay some bills that are coming due and she took care of that, and a few other things too. Best of all, she said that she and Jim would drive down to New Jersey on Friday night and bring Florence back on Saturday morning.

I called Kathy, who said she would come in the late morning, and when she arrived she said I needed to be sitting up higher, and she and Julie and Marty got various pillows arranged to get me more upright. I had taken all my medicines (I wasn't very hungry, but made myself eat some tea and cinnamon raisin toast because I can't take some of the medicines on an empty stomach). Right now the thought of eating is very unpleasant. Kathy said I needed to eat just a few bites of something to keep the medicines from making me nauseous, and I thought of rice pudding. There's a supermarket brand made without additives, and Julie said she would get some when she went out later. When I was a kid, my mother used to give me a certain kind of baked custard that was sold in what we called German delicatessens, but I haven't seen anything like that in years. Rice pudding is somewhat of a substitute.

It's another very warm day. Julie encouraged me to try to sit outside (more normal April weather is supposed to return tomorrow), and she had all three kids do a clean-up of the little porch right off my bedroom. I haven't been out there yet because I have the mask on and the hose isn't long enough, but maybe I will try to do it later.

I'm so tired, but I've just tried to see if I could take a nap, and just couldn't drift off. Kathy said that I'll probably start sleeping more during the day as I get weaker. Meanwhile, I'm looking forward to the three energy-generating treatments--acupuncture tomorrow, massage on Thursday, and the Reiki practitioner whom Kathy is going to try to get here some time this week.

Marty and Julie are going to coordinate their schedules, along with the availability of Ann and Susan (the new PCA) so that I won't be alone. And once Florence is here she will spend a lot of time with me (although it's important that she get time off, too).

Monday, April 27, 2009

Getting more help

Julie and I interviewed a very pleasant young woman, Susan, this afternoon, and she will start tomorrow afternoon for a couple of hours. With her, Ann, and potentially one other person, I should be able to have someone here at times I might otherwise be alone, as that just no longer feels safe or comfortable. Julie has been very helpful with that and other things. She's been working out with Florence a time when she could drive down and bring Florence here (so she'd only have to do the train one way), but when she said the date they've been considering is May 17th I said that sounded very far away, so I think they're going to try to make it sooner.

She also said that she realizes how important it is for Marty to keep up with his meetings and organizations; that she recognizes that it's an important part of his life and something he'll need to help keep him anchored when he's grieving me.

Julie's also been helping with getting the paperwork organized for the mortgage refinance. I think she understands how overwhelmingly hard even the simplest little thing seems to me these days.

It's time to go to sleep. That sounds so good.

Finding new PCAs

The combination of my growing weakness, and the fact that Ann is not going to be available this week has made the PCA situation somewhat urgent. Yesterday Julie suggested placing an announcement on our town's e-mail list, which people use for all kinds of things from neighborhood gripes to selling unwanted items to just about anything else. She posted it late yesterday and has already gotten two replies, one from a nursery school teacher (who we will be interviewing this afternoon) and the other from a nursing student (who has finals this week and will let us know when she is available for an interview). So I'm hoping that I'll find at least one compatible person.

I'm still feeling incredibly tired and just don't want to do much of anything. I had a rare night last night in which I didn't get a lot of sleep, which is a bit ironic since the TV was off. Oddly, I keep having these dreams about going to work, having a job, and stuff like that--right now, my "job" is to manage my last days as best as I can. Florence called this morning and said she will definitely be coming back soon--I need her so much.

Marty is so caring--it is so amazing, and so ironic, that we came into one another's life at this point; in the early part of our relationship I was almost always on the road (our joke was that he saw me mostly on the way to or from the airport), and then I very quickly changed into an invalid. There are so many people who would have said "this is not what I was looking for," but he reassures me constantly, in word and deed, that he is here for me. It seems strange, with all the bad things going on, that I should consider myself lucky, but at least in this one way I am.

I had a real scare yesterday when the computer shut down repeatedly and wouldn't stay on; having to get a new computer is something I just can't imagine having to deal with at this point. But after leaving it off for awhile I turned it back on and it ran a whole bunch of diagnostic tests on itself, and now seems to be working okay. Being a total computer idiot I have no idea what to do when the computer doesn't do what I expect it to.

Sunday, April 26, 2009

So weak, so tired

Last evening, Marty was searching available TV programs and found the movie "Funny Girl," which has powerful associations for him. He was living in Jerusalem when it came out and said that he and his first wife saw it many, many times. It made him feel quite emotional, and it felt good to be watching it with him and comforting him, as he has done so much to comfort me. I had been having a really miserable day, and at about nine thirty I just drifted off to sleep, holding his hand as he watched the end of the movie.

When I woke up a little after seven I thought he was still sleeping, but after awhile to my surprise he walked in from the dining room, saying he'd been up for a few hours and hadn't slept well. He asked if I felt up to going out for breakfast, but I just didn't have the energy, so he made me some cinnamon raisin toast and tea before going off to a meeting. I've been alone for a few hours and I don't like it. He just called and said he's on his way home.

Florence called after Marty left and I got really tearful. She was so supportive and sympathetic, saying that she admired how well I'd been handling myself and that I should just let go and let myself cry if that's what I felt like doing. She said she wished she could be here with me, and of course I wish she could too. I apologized for dumping on her, and she said that I shouldn't feel that way, that I was entitled to feel upset and angry and all the other things I've been feeling.

The weather has suddenly gotten unseasonably hot--like mid-summer instead of spring--but I think it will go back to more normal temperatures by tomorrow. I've got the door to the porch open and the ceiling fan going but maybe I need the air conditioner instead.

Ann is going to be busy all of next week so I'm not sure how we're going to manage. I really do have to find at least one more PCA.

Saturday, April 25, 2009


I've been feeling lousy, yesterday and today, in a non-specific way--just kind of the allover blahs. I've still got a lot of mucus, which I'm managing to cough up, with a lot of effort, even with cough medicine to try to keep things loose. I have no energy. Marty is still feeling sick, with a severely upset stomach and general lack of energy as well.

I feel so unmotivated to do anything, even putting together the very important appeal letter to the insurance company. Kathy was here yesterday, as always, very sympathetic and supportive. She said the Reiki practitioner came in this week to do a demonstration for the staff and that I probably would get to see her next week. I made an appointment to see Anne P. (the acupuncturist--to be distinguished from Ann B., my PCA) for next Wednesday. It will be interesting to see what style of acupuncture she uses (so far, every one I've seen has done quite different things).

I thought I'd get another e-mail from Dr. Forrow about the meeting on Monday, so I guess I won't be going to that. I'm hoping he will write a letter to the insurance company detailing the expensive services I will be using if I'm denied hospice care. I also need to call Dr. Meyer, my primary care doctor, to ask her for a similar letter of support.

Of course, insurance companies are very well aware that asking very sick people to jump through lots of hoops means they probably won't get challenged for many of their outrageous decisions, which is good for their bottom line. Obama's health plan is just as bad as all the others as it still keeps insurance companies and their need for profit as part of the mix. Until we get single payer, this garbage will keep happening.

Thursday, April 23, 2009


I woke up after a good night's sleep feeling much better. The heavy congestion in my chest was gone, and I felt a lot stronger. Marty also slept well, and he says he is feeling a little better, although still sick. I wanted something different for breakfast, and asked him to cook some Wheatena for me (a wholegrain hot cereal), which I ate with a little bit of honey.

Lisa arrived at eleven to give me my massage; we talked about the symptoms I've been having, and decided to concentrate on things that would give me more energy. I think it worked; I've been out of bed several times today, unlike the last few days, when it was a real struggle. Kathy wants me to try to be out of bed as much as I can, but some days it's just impossible.

Ann arrived in the middle of the afternoon (Marty had gone out), and she did some things like straightening up things in the kitchen and helping me get things off the bed, which had gotten piled up with stuff again. A little while later my friend Susan arrived with the chicken coconut soup we both like so much from the Thai restaurant. She made a pot of our favorite tea--lapsang soochong--and said that the tea canister was almost empty. The other day when we were out I went to the tea store with Marty and stocked up on all the other teas I drink regularly, but I didn't think to check thelapsang soochong, since I don't drink it that often. Susan said she'll bring more next time she comes.

Since there were three of us we sat in the dining room, drinking tea (I used my fancy china teacups) and eating our soup and talking. Susan thinks I need to write an appeal to the insurance company, with supporting letters from Dr. Meyer (my primary care doctor), and Dr. Forrow, detailing the amount of expensive, hospital based services I'm likely to need if I'm denied continuing hospice care. She also thinks we might be able to find a sympathetic Boston Globe columnist, which would put additional pressure on the insurance company.

Meanwhile, I'm still trying to determine the date I become eligible for Medicare. The person I called at the Social Security 800 number said the five months of retroactive payments don't count (which means I wouldn't become eligible for Social Security until October), but I sent an e-mail to my cousin Jon, who works for Social Security, and he said that they do count, which means I would be eligible for Medicare in July. I need to get a definitive, official answer, because the sooner I'm eligible for Medicare the sooner the insurance company will no longer be involved.

I will start working on the appeal letter tomorrow; right now I'm tired and think I'll start getting ready for bed.

Wednesday, April 22, 2009

Everything is difficult

I'm still feeling lousy--lots of congestion, and extremely weak and short of breath, as well as still very anxious about the insurance situation. In addition, Marty is sick (he says he feels better than he did yesterday, but still not well), and Julie has been struggling with an ear infection for weeks, which isn't getting better (and which surely is contributing to her pressure level). Ann didn't have any time to come today, but she will be here tomorrow afternoon. Thursday is also massage day, which should help with some of this tension.

Next week I will start with the new acupuncturist, who lives across the street and will come to the house. When Kathy was here she said that the Reiki practitioner should be available soon (she's been saying this for awhile, so I'm hoping it will be by next week).

Meanwhile, I'm working on the insurance problem. The case manager from the insurance company called this morning, and said that the contract calls for a limited $5,000 benefit for home care, and can't be modified. What I am allowed is an appeal, and I have the information on who that is to be sent to. What I will say, basically, is that if they look at what they were paying out in the months before I went into hospice, they were paying for multiple hospitalizations, ambulance calls, etc., which will only become more frequent as I get sicker. And even if I stay alive longer than they seem to want me to, the longest they will have to cover me is until October first, when my Medicare kicks in.

Nancy came this afternoon and I was able to talk about how anxious I am about the insurance matter, and she was very reassuring, letting me know that I had lots of support. She is easy to talk to, and like Lisa, she says she feels she really benefits from the time she spends with me.

Susan called a little while ago--she's going to come tomorrow, bringing delicious soup, and she wants to help me with the insurance stuff. She suggested contacting one of the Boston Globe columnists who do human interest stories--someone not dying fast enough to suit their insurance company sounds like the kind of thing that would appeal to them (especially since I was recently profiled in the Globe).

I'm exhausted and will be turning out the light soon. At least I don't have trouble sleeping.

A scary day

It's late, and I really should turn out the light and try to sleep. It's been a better day than yesterday, but I'm still congested and having a lot of trouble breathing. What's scarier, though, is that Marty is sick. He's very weak and is running a fever. We're both hoping he feels better when he wakes up. I'm still very nervous about the insurance situation. This afternoon I sent an e-mail to Dr. Forrow, who heads the palliative care department at Beth Israel/Deaconess (he's the one I spoke to originally about hospice), and almost immediately received a reply from him offering his help in whatever ways he could. One (joking) suggestion is that I should inform the insurance company that I no longer wanted hospice services, and was withdrawing my DNR order, so that I'd end up with frequent hospitalizations, ICU stays, life supports, etc.--the point being that the insurance company would cover the costs which would probably run into hundreds of thousands of dollars. More seriously, he said he was holding a meeting next week on end of life care, to recommend to the governor and legislature how things could be improved, and that he would probably use my story as an illustration to start the meeting. I guess I should try to go to sleep now.

Monday, April 20, 2009

Another rough day

I woke up several times this morning before finally waking up for good a little after eight. One problem Marty and I have to figure out is that he needs to fall asleep with the TV on (he puts it on the timer so that it will shut off automatically), and if he wakes up in the middle of the night he will switch it on again, which wakes me up. Sometimes I'm sure that he's sleeping and I switch it off, which is enough to wake him up enough so that he turns it back on. So last night I took my pillows and blanket and went to sleep on the daybed in the office. I saw it as solving a problem, not a hostile act on my part, but he didn't like it. I think he got up for awhile, but I'm not sure, because I fell asleep till about six, and then went back to the bedroom, and he was asleep there. I would like to get one of those gadgets with the wireless headphones, but Marty says my TV doesn't seem to have the needed input jack for it. It's probably worth buying a new TV as relatively small, old-style TVs (as opposed to flat screens) don't cost very much, so he can use the headphones.

When I woke up for good I was feeling extremely congested. There was a lot of mucus in my chest that wasn't moving at all. I was coughing a lot but getting up very little, and feeling really lousy. Somehow, in all the confusion of feeling awful, and the tension with Marty, we both completely forgot that Monday is acupuncture day (I don't think I would have felt up to going in any case). At one point, I was coughing so hard that I managed to wet the bed before making it to the bathroom, so when Ann arrived at eleven she had to strip the bed again and wash all the sheets. I never seem to have one of the disposable pads on the bed when I need it, because they're uncomfortable and bunch up under me, but I'll probably use one for the next few days, anyway. I have this problem only from time to time.

Kathy came to check me out and said I should discontinue the Levsin, and just use the cough medicine, along with a lot of fluids, to try to loosen the congestion, so that's what I've been doing. A little while later Julie came down and offered to help me with the bills, which I had put in order the other day but had never gotten around to writing the checks. First she had to find the pile (which had gotten moved), and then we started going through them. She wanted to pay some on line, and others by check. There was one bill that related to a minor accident I had almost two years ago, which has to get paid by my car insurance company, and I told Julie that at one point I had the claim number, but it was probably in the big pile of papers she cleared off my desk a few weeks ago, and asked her if she would call to track it down. Then we had a disagreement about some papers which she wanted to throw away and I wanted to save, at which point she got totally exasperated and said I was being impossible.

I was, of course, really upset. I called Florence, who wasn't home, and then called Marty, who was done with some of his errands, and asked him to come home, and when he got here he tried to calm me down. I know that I can be hard to be around when I'm feeling lousy, but I also try, as much as I can, to thank people (like Julie, Marty, Florence, and Ann) when they do things for me, and tell them that it's hard to be so helpless.

Eventually I did reach Florence, who helped me to calm down. So I'm slowly feeling better, and, typically, now that it's getting into the evening, better physically as well. I guess I will try to sit down and pay some bills, as it looks like I'm better off doing it myself.

Sunday, April 19, 2009

New days, new worries

It was a beautiful early spring day today. I was able to make my own breakfast, and then Marty and I got ready to go out--first to a church in Duxbury (about an hour away), where one of his colleagues was discussing the Israel/Palestine situation with another panelist. I had planned on lying down while this was going on, but decided to sit and listen because I didn't feel too tired and I was interested.

After that, we drove to pick up Donna (about a half hour drive) to go out for lunch. Donna had bought Marty a bunch of small but useful presents (like gift cards to various places), a birthday balloon, and a bunch of silly cards. I've been feeling bad because I hadn't been able to get anything for him, but I told him yesterday I wanted to take him shopping for a new gold pendant of a Jewish star or chai (the Hebrew word for life); when we met he had both of them and somehow doesn't anymore, and it's possible that I might have lost one of them, although neither one of us is sure.

When we left the restaurant and got into the car I realized that my portable oxygen machine was empty. Donna said that there was a fire station just a few minutes from her house, and since we'd had such a good experience with the North Attleborough fire station in February, on our way back from Providence, we stopped there. Marty talked to a desk clerk, who said they were unable to help, and suggested we try the nearby hospital. We discussed it; we were both sure that the hospital would put me through the whole emergency room routine (for which I have a $100 co-pay), and that it made more sense just to drive home, which took about forty-five minutes. As soon as we got home, I went onto the big oxygen tank, and seem to be all right. I've been resting since we got home and I'm fairly comfortable.

Meanwhile, the other big worry is my health insurance situation. When Celeste, the hospice social worker, was here last week she asked me to find out when I become eligible for Medicare, since, as she put it, "Your health insurance company is being difficult." I wasn't sure exactly what that meant, but on Friday I got a call from the insurance company case manager, who said I had "used up" my hospice benefit. I called Social Security--I started receiving Social Security Disability in December, 2007, and there is a two-year waiting period for Medicare. I automatically become Medicare eligible on my sixty-fifth birthday, which is in October. What I wasn't sure of was whether the five months of retroactive payments they gave me when I first qualified were counted in determining the two year waiting period, but it turns out they aren't.

I'll be talking with Celeste on Tuesday (Monday is a holiday here) to see what happens next, and I'll also be putting in calls to some advocacy organizations. All this is, of course, just one manifestations of the craziness of the U.S. health insurance system, which is much more centered around excluding people from coverage (and in corporate profits) than in meeting the needs of sick people. I need hospice services; the problem will be in finding a way to pay for them.

Saturday, April 18, 2009

More ups and downs

I woke up about 3 A.M. and wanting not to wake Marty (who really needed the sleep), I went and lay down on the daybed in the office and read for awhile, until the words started getting blurry and I went back to bed. I woke up again about six thirty, but then slept again till almost eight. Since Marty was still sleeping, and I was feeling up to it, I went into the kitchen and made myself breakfast. We've been out of cinnamon raisin bread for the past few days, so this morning it tasted especially delicious. Marty slept till almost nine thirty.

I'm still feeling very congested, so I'm back on the cough medicine and Levsin routine (the cough medicine loosens the secretions, while the Levsin dries them) , which Kathy wants me to gradually taper over the next couple of days. I get out of breath from any little exertion, but at least I feel strong enough to try. That's better than not wanting to get out of bed at all.

Tomorrow we're supposed to celebrate Marty's birthday (belatedly), by going out to dinner with Donna, at a restaurant near where she lives that gives a free dinner to a customer who's having a birthday (Donna's already checked with them and they will honor the policy even though it's not his actual birthday). I hope I feel up to it.

We did pretty well with the Friday and Saturday puzzles. Yesterday, we got most of the Friday puzzle done before Marty left for his doctor's appointment, and while he was gone I went back to it, found a few mistakes, and finished it. Today we had to look up a lot of stuff (for example, the author of an obscure book), which makes it a lot less fun, but we did finish it. It's nice when we get to the point where we can just start plugging things in (usually after erasing a few mistakes).

We went out to lunch today, to a wonderful Indian restaurant. Marty is always pleased when he can get me out, and the warm weather felt wonderful. After we ate, we went to the tea store and stocked up on all my favorite teas: Earl Grey, darjeeling, assam, and sencha, the Japanese green tea that I drink cold. He's gone for a few hours, back to his house to pick up some clean clothes and stuff. He suggested I try taking a nap while he's gone, and I might just try to do that.

Friday, April 17, 2009

Another bad day

Yesterday started out strangely. I woke up early, and was reading the New Yorker till I dropped off to sleep again, only to get wakened by the phone an hour or so later (a bill collector). In the confusion of straightening that out (I put the bill, a minor amount, on my credit card), I took off the bi-pap mask but somehow forgot to hook myself up to the nasal cannula.

I was feeling really awful, gasping for breath, for about an hour, until I suddenly realized I wasn't wearing my oxygen. And even once I had it on, I continued to feel lousy most of the day. I felt weak and tired and was coughing up some ugly purple stuff. Ann arrived and started doing stuff like emptying the dishwasher and making jello. Marty was talking about going out to do grocery shopping but he got busy with some of his own work. He wanted to go out to dinner (since Passover was over and he could eat regular food again--he said his "tradition" was to eat pizza on the first night after Passover).

I decided I felt strong enough to take a shower as long as Ann could comb my hair--as always, a shower felt great and lifted my spirits. It was a really warm day, and we drove with the windows open. We went to Watertown, to the pizza place we often go to after acupuncture--a kind of upscale, "gourmet" pizza place. I like it because they have the option of whole wheat crust, and I had a delicious special: eggplant, caramelized onions, and ricotta, along with a beer. As often happens, I felt stronger as the day went on, although by the time we were finished eating I was getting pretty tired. Marty had a conference call, so we drove home and I rested in bed, feeling better than I had for most of the day.

Today I think will be different. I feel stronger (although I'm coughing up a lot of very thick mucus, which takes a lot of effort). I have some medicine to thin the mucus, so I just took some of that (I know that when Kathy gets here in a little while she will ask me if I took it). Ann will be here again today; Marty has a doctor's appointment with the foot doctor. His foot has been bothering him all week, so I'm glad he's finally having someone look at it. I think he worries about me so much he's not taking care of himself, which is not good. One of the main things I used to tell people when I taught advocacy skills is how important it is to take care of oneself ("otherwise, you can't take care of anyone else").

Wednesday, April 15, 2009

A blue day

I feel only slightly weaker today than yesterday, but very blue and unmotivated. I thought I could tackle the pile of papers, but it's only getting bigger. When something has to be done, I do it--I needed to get some missing information for the tax preparer, which involved calling the mortgage company, and I got a pile of documents faxed to the guy is who working on the mortgage refinance. I wrote a check to the cable/Internet/phone provider, which Marty brought to their office, because I got a call from them that the bill was way overdue. But unless something pushes me like that, I don't feel like doing much of anything.

It was a nice sunny day, and Marty rolled up the shades and opened the window, and it felt good to feel a nice breeze. I hope in a few days I'll be able to go out and sit on the porch. Maybe I can even get some flowers for my window boxes and hanging baskets, although I'll probably need to get the kids to water them for me.

Marty has been having a hard time--he's overburdened and taking care of me doesn't make it any easier for him. He's been running errands and things keep going wrong. There's a cord on the fax machine that keeps getting disconnected and is getting more and more bent and harder to plug in each time; today he took it to Staples to see if they had a replacement; they didn't, and when he got home he couldn't find the original one (he finally found it, but he's been having things like that happen the past few days, an indication of how much pressure he's under). I wish I could do something to make it easier for him.

Tuesday, April 14, 2009

Staying strong

The good feeling that started with yesterday's acupuncture treatment lasted the rest of Monday and into today. I feel stronger than I have felt in quite awhile. Lisa, my massage therapist, came today instead of the usual Thursday, and the massage increased my feelings of well being. I've been out of bed a little bit more without the overwhelming fatigue that has been with me for such a long time. Marty is out (he had to take care of things like laundry, getting a haircut, etc.) and I was able to make my own lunch (a chicken pie) and eat it sitting in the kitchen.

I'm still trying to deal with the accumulation of paperwork and bills that are piled on the bed. I thought I'd get to some of it today but I just don't feel that motivated. I'm going to try to get it sorted into piles at the very least, so maybe I can tackle it tomorrow.

Kathy was here and she said that the Reiki practitioner is definitely coming on board, so I am looking forward to trying that. I'm also going to switch to another acupuncturist, Anne, who lives across the street but is willing to treat me here. It's a lot more expensive, but I think the time is approaching when I'm just not going to be able to make it out that much.

Kathy and Julie also think I need to look into hiring an additional PCA as Ann has only a limited number of hours. I'd really like to find someone else through personal contacts; I put in a call to Cheryl at B.U. to see if any of the students in her program would be interested. And I sent an e-mail to Debbie at the National Empowerment Center who mentioned back at the holiday party in December that she knew someone who might be available.

On days when I feel strong, like today, it's hard to think about how needy I can be when I feel weak and can barely get out of bed, but I need to face the fact that the general trend is that I will continue to get weaker.

Monday, April 13, 2009

A really good acupuncture treatment

When I woke up this morning I felt awful. I was coughing so hard it made my heart pound--at one point I could literally see my chest moving, which made me feel panicky. I was very weak, but I was determined to get dressed and go to acupuncture. In addition, Marty was in a panic of his own because he had misplaced his appointment book, which is his lifeline the way my PalmPilot is mine (or at least used to be when I had a life with places to go).

I'm not observing Passover (Marty is eating only matzo), so I had a breakfast of tea and cinnamon raisin toast, struggled to get some clothes on, and made it into the car. The treatment room that Nate (my acupuncturist) uses is at the end of a long hallway and walking the length of it took all my strength. But once I was settled on the treatment table I started to relax. I'm not sure why I find acupuncture so relaxing or what the mechanism is, but after the treatment I walked back down the hallway much more easily, and the relaxed feeling has lasted the rest of the day.

We decided not to stop for lunch (because of Marty's food limitations) and instead came home and Marty heated up some leftover bean and barley soup and stuffed cabbage for my lunch. I got a really intense sinus headache, but after my experience with the last one I knew what to do, and after taking some tylenol and morphine it went away pretty quickly.

Once we were home, Marty continued searching for his appointment book, which he finally found, taking the pressure off. He put a pile of papers on my bed which I need to sort through (a lot of them are bills that need to be paid); meanwhile, he is having a meeting with some people in the dining room.

Ann arrived during the afternoon and straightened up a lot of things that were lying around so the housecleaners could have clear surfaces to work on, so for now the house is both clean and neat. I'm probably going to want only a light dinner because I had such a big lunch so late; so maybe Marty and I can have a relaxed evening watching "Jeopardy!" and "Antiques Roadshow," two of our favorite shows.

I feel better than I've felt for days, and I think acupuncture is a big part of the reason. Next Monday is the final day of the semester, and I told Nate I probably would not be signing up for the following semester because it's getting harder and harder to get out of the house. Julie asked our neighbor Anne, who lives directly across the street and is a professional acupuncturist, if she would give me treatments in my house (she usually sees clients in her apartment, which is up two flights of stairs, obviously impossible for me), and Anne said she would. I don't know what she'll charge (obviously it will be a lot more than the greatly reduced rate I get at the New England School of Acupuncture), but it will certainly be a lot easier.

Sunday, April 12, 2009

Still sleepy

I'm tired and don't feel like getting out of bed. I feel bad that it's Marty's birthday and I haven't been able to get him anything or celebrate with him...instead, he's just taking care of me, as always. I just want to rest and sleep, rest and sleep.

We did the Sunday crossword puzzle, which was pretty easy, but fun. I've read about as much as I want to read of the Sunday papers. I'm bored. My friend Prudy, who also has COPD and is waiting for a lung transplant, called awhile ago and said she'd be coming for a visit, and would call back to let me know when, but she hasn't called yet.

I can't even think of anything to write about. I'm bored...and I suppose I'm boring.

Saturday, April 11, 2009

A sleepy day

I think I slept till about nine, and then, after Marty made me some breakfast, I was reading the newspapers and listening to our favorite NPR radio program, "Wait, Wait Don't Tell Me," which is a humorous look at the week's news, and fell asleep again. Now I'm awake, but very sleepy, and it wouldn't surprise me if I drifted off again a bit later.

I guess this is just one more manifestation of my becoming weaker. When I woke up this morning I took off the mask and went to the bathroom for a few minutes without putting on my regular oxygen--big mistake, as it left me gasping and took me awhile to recover even after putting the oxygen back on.

Marty had suggested an excursion to Hartford today--there was a meeting he wanted to attend, and we have friends there we could have had dinner with, but being so low energy today it doesn't seem practical.

For breakfast this morning, Marty made me a Passover specialty, matzo brei--fried matzo--basically a version of French toast with matzo substituting for the bread. When Florence was here, we were discussing how to make it, and discovered that she and I shared one technique--softening the matzo with boiling water, before draining it off and adding the beaten eggs, while Marty used his mother's method of putting the broken up matzo pieces directly into the beaten eggs and softening it that way. I must say I think his method produces a chewier result, but I suppose it's just what one is accustomed to. Then, of course, there's the question of what to put on it--I prefer jam, Marty likes sugar, and some people like salt and pepper.

I have a feeling I'm not going to get much accomplished today...just too sleepy.

Friday, April 10, 2009


I guess this is the new plateau Kathy was talking about. Although I was expecting to feel totally exhausted after being out yesterday, I've just felt "normally" tired. I haven't needed the bi-pap. I have mostly stayed in bed, although I did get up for awhile (after a wonderful massage), to sit in the dining room and talk with Daniel, a survivor activist from Israel. Eventually I got tired and went back to bed.

Ann was here and there are, once again, fresh sheets on the bed. I still have a lot of papers and stuff to sort through, which I'm hoping I'll be up to doing tomorrow. Today I just feel sleepy and out of sorts, and not very interested in doing much of anything.

Marty heated up leftover turkey and trimmings for dinner--I always find a turkey dinner even better the second night, especially with the turkey roasted this way which doesn't dry out (even when reheated). Since dinner I've just been playing around on the computer, and I'm about to go to sleep. Maybe tomorrow I'll have a little more energy, but at least today was not a day of total exhaustion.

The second seder

Yesterday went a lot better. Because we were up so late, we slept till nine or so, and I didn't need the bi-pap once I was awake. Kathy came again to check me out (since she is taking Friday off) and said that I should continue to use the morphine and ativan to make myself as comfortable as possible. I mobilized some energy and was able to take a shower and get dressed in the late afternoon. As always, taking a shower feels good. Ann combed out my hair; having her here yesterday was great, as she helped Marty finish cleaning up the big mess that had accumulated in the kitchen. She's going to come back this afternoon to get fresh sheets on the bed, which we didn't get to yesterday.

Marty was worried that I would use up all my energy showering, but I felt good and strong when we were ready to leave the house. Marty's friends Lee and Sherry live in Chestnut Hill, and like most places around here, it is impossible to get from Point A to Point B in any logical way. There was also a lot of late rush hour traffic, and we thought we were running late, but the two other couples they had invited arrived at just about the same time we did.

This time I was able to sit at the table almost the whole time, although at one point I did excuse myself and went to lie down on the couch in the adjoining living room. I looked around for something to read, but didn't need it as I quickly fell asleep. I woke up after a bit (no idea how long I slept) just as Marty came in to check on me and see if I was ready for some dessert. It was a very pleasant evening and I'm so glad I felt up to going. Amazingly, I don't feel totally exhausted this morning. Lisa is supposed to be here soon for my massage.

As always, feeling better improves my mood, and I feel much more optimistic today.

Thursday, April 9, 2009

The seder

I had to stay in bed with the bi-pap on most of the afternoon, so it fell on Marty to get everything ready. He got some very pretty paper plates with flowers on them--very springlike--and used some of my beautiful etched glass stemware for the wine. I had hoped to shower and dress, but I just put on my robe and came and sat at the table for awhile during part of the reading of the Haggadah, then went back to bed (and back on the bi-pap) for awhile, and then got up again to make the gravy and have turkey. I wasn't sure how the matzo meal would work as a thickener, but the gravy thickened up beautifully, and the high temperature cooking results in wonderfully browned drippings with lots of flavor. I ate some turkey, gravy, and vegetables, then went back to bed before the desserts. It was pretty late by the time everyone went home, so we ended up not going to sleep till after one, but then slept till about nine.

I've been managing without the bi-pap so far today, so I'm hoping that in a little while I'll get up and take a shower and have Ann comb my hair, so I can get dressed and go with Marty to his friends Lee and Sherry. I'm very weak, but I want to do this. I have limited supplies of energy and have to decide how to spend them, but this is something I want to do, even if it means spending several more days in bed.

Thursday is usually massage day, but Lisa isn't coming till tomorrow because of Passover. Also, in another switch, Kathy was here today instead of Friday because she is taking off Friday for Easter preparations. She says I should continue to take as much morphine and ativan as necessary to be comfortable.

I feel blue and discouraged today. A step downward is difficult to adjust to. I lie in bed and think about things that I could do, and then I get up to go to the bathroom or get something from the fridge and realize just how weak I am and how I just need to get back to bed.

Wednesday, April 8, 2009

Another step downward

It's getting harder and harder to breathe. Last night, before I put on the bi-pap mask, I could feel my heart pounding in my chest as I was laboring to breathe, and this morning when I took it off to have some breakfast it started again. I called Kathy, who told me to put the mask back on and do a nebulizer treatment, and to take ativan and morphine as needed. She stopped by to check me out, and when I asked her if I had taken another step downwards, she said it certainly seemed that way. But she also said she expected I'd hit another plateau, so I guess I will slowly get used to doing a bit less and being even weaker than before.

Poor Marty is preparing for tonight's seder while also taking care of me. He's trying to make it easy for himself by having the guests (I think he's invited about six people) bring a lot of the food. He's going to roast a turkey, using the wonderful quick high-temperature method I got from Gourmet a few years ago, and he's also making the haroseth (a mixture of chopped apples, walnuts, honey, and wine). I said I would make the gravy, but he reminded me that I can't use flour (non-Kosher for passover) so it's going to be interesting to see if I can thicken gravy with matzo meal. At least, I'm hoping I feel strong enough to do that and to sit at the table at least part of the time. It would also be nice to be showered and dressed. And I'm also hoping that by tomorrow I'll be up to going to his friends' house for the second seder. We went last year and although I had to lie on the couch part of the time, it was nice to be welcomed and I want to do it again. But I'll just have to see how I feel tomorrow.

Gilbert, who is very sensitive to how I'm feeling, has been cuddling with me a lot, although at the moment he's down at the far corner of the bed. Funny, but just as I typed that he came and lay on my stomach. He has a way of totally relaxing his body and just draping himself across me, which I find very comforting. Oliver is cuddly too, but not nearly as much as Gilbert, and right now I've had to chase Oliver away a few times because I have a can of ginger ale with a straw (the only way I can drink with the mask on), and he is intent on stealing the straw! He's not terribly interested in a straw if you just give it to him--for some reason he has to steal it out of whatever one of us is drinking, usually making a mess in the process!

The other day I spent a few hours sewing a little dress for my little white bear, Bo-Bo, and now I'm waiting for Evelyn to help me figure out how to make a vest for Pinkypine, which is a little beyond my limited sewing talents. I knew exactly how I wanted to make the dress and basically it worked out as I had thought--a tube of cloth for the bodice, two tiny spaghetti straps (turning them right side out was the hardest part), and at the bottom a ruffle of tulle. She looks adorable. Julie and Evelyn picked out some beige fabric for Pinkypine's vest, which will look nice with his brown fur. Once it's made I may try trimming it with some embroidery.

A new New Yorker and a Vanity Fair arrived today, so I have lots of stuff to read. And I'm sure, with the extra morphine, I'll also be taking a nap.

Tuesday, April 7, 2009

Feeling good again

To make up for having such a horrible day on Saturday, I have felt strong on Sunday and Monday, although today I'm a bit tired and just want to stay in bed. Yesterday was acupuncture day and, as usual, the treatment left me feeling quite relaxed. There are just two more weeks left in the current semester, after which I'll be starting with a new student. I'm going to ask if I can continue to work with the same supervisor, as I really like his approach.

Afterwards, Marty and I went out to lunch, and on the way back, still feeling strong, I wanted to stop in a crafts store that sells ribbons, and lots of other things, as I wanted to put a new ribbon on the neck of the cute little bear that came with my Valentine's Day candy. His ribbon said "Russell Stover" and I didn't particularly like it. The store has ribbon on the lower level, and there is no elevator, just stairs, so they gave me a stool to sit on while one of the clerks went downstairs and brought up a selection of ribbons for me to look at. I was very glad that the storeclerks were aware that this is the proper way to meet their obligations under the ADA to make their facility accessible. I found a lovely irridescent magenta ribbon that goes beautifully with Elbee's brown fur. Although it was a grey, cold day, with occasional rain, it felt good to be out.

Florence left first thing on Monday morning (Julie drove her to the train station); it was hard to say goodbye to her, but she promised she would be back for another visit soon. Last time she was here she was sleeping upstairs, and she was going up and downstairs repeatedly, which resulted in her doing some damage to her knee, which she is still being treated for. So this time she stayed down here in my extra room, which has a comfortable daybed, and she limited her times on the stairs. Last time we kept urging her to use the front stairs, which are much wider than the back ones, and she was poo-pooing us, but this time when she did go upstairs she was using the front stairs, so I hope at least she hasn't done any more damage.

Marty is planning to host a seder here tomorrow evening, and he has promised to do all the work involved. He's going to roast a turkey and is asking his guests to bring various other elements of the meal. I'm hoping to feel strong enough to sit at the table the whole time, but if necessary I can go lie down for a bit and then come back. I think I will volunteer to make the gravy (if I feel up to it)--as far as I'm concerned, the gravy is the best part of a turkey dinner! On the second seder night we'll be going to some friends of Marty's.

Sunday, April 5, 2009

Saturday--a horrible, horrible day

I woke up on Saturday feeling it would be a good day. Very seldom have I experienced a day that started out good turning as bad as yesterday turned out to be--it may be about as sick as I've been through this entire illness. I was looking forward to getting out to the kids' birthday party, which was scheduled to begin at two o'clock. But at some point in the late morning I was lying in bed and it suddenly became extremely hard to breathe. I was gasping and struggling for each breath--I asked Florence, who was sitting with me, to give me the mask for the bi-pap machine, and with the machine on, things eased up a bit, but I was still extremely weak and tired, and it quickly became clear that I wasn't going to the party, or anywhere else.

Florence left with Julie, Jim and the kids to the church hall which Julie rents almost every year to hold this party--it's an ideal set-up, a huge room where lots of kids can run around and play without bumping into anything, and Marty left for awhile to pick up Julie's father and deliver him to the party, and then came back home to be with me. I slept most of the afternoon and early evening, with the mask on. At one point I took it off and went on just my regular oxygen because I had to go to the bathroom, but as soon as I got back to bed I wanted it on again. Having the air pushed into my lungs, rather than having to fight to get it in, makes an enormous difference.

By evening, I was feeling a little better (my best times usually are evenings). Julie said she was ordering Chinese food and they would be giving Evelyn her presents (Kyle and Viv got theirs on their actual birthdays, which are in January). It was a struggle, but I managed to make it up the stairs and to eat a little food, and to watch Evelyn be surprised with a new guitar, which was her major present, but I wanted to go back down shortly after that, put the mask back on, and fell asleep again. Even after sleeping most of the day, I had no trouble sleeping all night.

Today is quite a different story. I feel much stronger and Marty and I went out for breakfast with Florence. We had wanted to go to a fabulous Chinese Sunday brunch, but she said her stomach wasn't feeling up to it (we've been eating Chinese food almost every day), so we went to a nearby diner that serves a wonderful veggie omelette. I knew I'd eat only part of it (it's enormous); I took the leftovers home and will find out tomorrow morning if they reheat successfully.

Friday was also a pretty good day. In the afternoon, Nancy, the hospice chaplain, stopped by, and she visited with Marty, Florence, and me for more than an hour. Earlier, Florence and I had worked together (she doing most of the work) on the noodle pudding that I'd been craving, and it came out fabulous. We started by reading a bunch of different recipes, then more or less combined the best features of each. Marty, Florence, and I all ate some practically as soon as it came out of the oven. We offered some to Nancy, which got us into a long discussion of various ethnic foods and memories from each of our childhoods. Food really is a very emotional subject; I can see that especially clearly now, when I'm having so many food cravings, most of them linked to things I ate as a child.

Florence is leaving tomorrow morning; I will be very sad to see her go, but she's promised to come for another visit soon. I'm hoping I feel strong enough to go to acupuncture tomorrow.

Friday, April 3, 2009

Things that help

Yesterday was massage therapy day, something I always look forward to. When Lisa arrived, I had a nagging headache (not severe, just annoying) and was experiencing episodes of fluttering diaphragm, which interfere with breathing. She set up the massage table, and had me lie down, with my head somewhat more elevated than usual to assist breathing, and then she worked for a long while on my head and neck. I could feel the relaxation spreading through my body as various tension points released. She put one hand gently on my chest and carefully stretched to open things up, and I was able to recapture the image, which I have been using successfully, of the fluttering diaphragm as a rearing dragon, slowly being lured back to its cave. Then she finished with some work on my feet, which I could feel as relaxation spreading through my entire body. We listened to the new CD Myra left for me, music for flute and harp, which was lovely. Once the massage was over, the positive effects lasted all day.

In the evening, Florence asked me if I felt up to going out for dinner, and I decided that I did, so all of us, Florence, Marty and I, and Julie, Jim and the kids went to a local Chinese buffet. It was fun, but made me quite tired, but I slept well and am feeling pretty strong today. It's gray and rainy out, so I will stay in today, but I'm planning to go out tomorrow for the kids' birthday party. Every year for the past few years Julie has rented a church hall and held one party for all three kids, where there's lots of room to run around and play various games, and they also use it as a fundraiser for charities the kids support, like helping homeless families. And on Sunday, I'm hoping to feel strong enough to go with Florence and Marty to a wonderful Chinese Sunday brunch. It will be hard saying goodbye to Florence when she leaves on Monday, but she's promised to come back soon.

Kathy was here a little while ago, and she said that hospice may be about to acquire a Reiki practitioner, and that she was sure I'd be interested, and I told her that I certainly would be. Anything that holds the promise of making me more comfortable is something I'm willing to try. It was hard to miss acupuncture this week, because I always feel so good and relaxed after a treatment. So I certainly will make every effort to get there on Monday.

Meanwhile, I'm just continuing to try to keep my spirits up and enjoy little things. Florence has promised to make me a lockschen kugel (noodle pudding) which I've been craving for awhile and am looking forward to eating later today. Comfort foods are definitely one more thing that helps!

Wednesday, April 1, 2009

Tired again

After feeling so strong yesterday, it's disappointing to feel weak and tired again today. I've been out of bed a few times, but feel most comfortable just resting. It's great to have Florence here; we're both hoping that I have a day when I feel up to going out to eat, or do some other fun things. But today is definitely not that day.

I didn't get a good night's sleep last night because Marty was having trouble sleeping, and at one point I woke up with intense chest pain that I now recognize as heartburn, so at least it's not scary, just very uncomfortable. I didn't feel up to making my own breakfast so Marty made tea for me, along with a bowl of pasta and butter (Florence expressed surprise at my eating this for breakfast, but I pointed out that it's really the same as cereal).

I've spent most of the day just resting, reading the paper, doing the crossword puzzle (with Florence, as Marty left mid-morning to run some errands), and not much else. I thought maybe I'd get sleepy enough to take a nap, but that hasn't happened.

Ann called and said that her cold was much better, but I decided it should be at least another day before she comes over. Catching a cold is just too scary--it can so easily turn into pneumonia.

I'm continuing to get wonderful e-mails through the link NEC put on their page; different people who have met me at conferences or read articles of mine, saying what an impact I've had on their lives. I can remember so clearly when I was writing "On Our Own" and imagining that it would reach people in just that way; and it is so gratifying that over the years so many people have told me how reading the book changed their lives.

Just today I got an e-mail from someone who wants me to make a videotape discussing my ideas about the value of the hospice model for a truly helpful mental health system, to be shown at a conference in May, which sounds like a fun project. It really is such a good parallel, and perhaps my final advocacy effort will be to get people in two different movements that have been (so far) unrelated to look at their commonalities.