Saturday, January 31, 2009

One bad day, one good one...

I'm not sure why it is, but I can almost always tell, when I open my eyes in the morning, even before getting out of bed, if it will be a good day or a bad one. Friday was pretty awful--when I woke up, I didn't even feel like getting out of bed for hours, and just kept drifting off to sleep. At one point, I must have pushed my Lifeline button, because the machine gave a loud signal and a voice came on asking if I was OK--I said I must have rolled over on it or something, and drifted off to sleep again. I think it was about ten before I woke up for good, and even that was because I got another phone call. I got the papers from the front step, but didn't even have the energy to make my morning cup of tea until Ann arrived, so she made it for me.

We finally got all the Christmas ornaments packed up in a storage bin which she took down to the basement, and we started on clearing some of the mess off the bed, but I didn't really have the energy to go through too much of it. Nancy, the chaplain, stopped by for a brief visit, and after that I sent Ann home and was able to heat up some leftovers, but everything was such an effort and I just wanted to lie down again.

But this morning was a lot different--once again, as soon as I opened my eyes I could tell I had a lot more energy. I was hoping to feel good as I wanted to join Julie, Jim and the kids in going out for dinner for Kyle and Vivian's birthdays (he was twelve yesterday and she turns seven today). I'm showered and dressed and have make-up on, which feels wonderful, and we're supposed to leave in a little while. Marty is with his friend Donna (shes's been having a hard time since her brother died suddenly of a heart attack about two weeks ago), but is headed back and plans to meet us at the restaurant.

I'm looking forward to tomorrow with Chris and Shery Mead--visitors are always good! And I've been getting e-mail from anumber of people who've been reading the blog and liking it. It's good to feel connections with so many people!

Friday, January 30, 2009

The medical story

It occurs to me that some people reading this may not know much about my medical history--you can skip this if it's stuff you already know. In 1988, I was diagnosed with chronic lung disease, after a history of multiple bouts of pneumonia (which I was told were probably not pneumonia, but early manifestations of the disease). At that time, the diagnostic terms being used were "pan-bronchiolitis" or "interstitial lung disease"; more recently, it's been COPD ("chronic obstructive pulmonary disease"). Whatever the terminology, it means that there are patches throughout my lungs that don't work properly, leading to diminished lung capacity. I don't have any of the usual risk factors, like smoking, exposure to industrial chemicals, or a family history, so no one is sure why I have it--just lucky, I guess!

In 1989, I underwent an open-lung biopsy (a major surgery) to retrieve some deep lung tissue for further testing, in the hope that a cause could be found, and therefore a successful treatment plan divised. However, as with so much of my medical situation, the results were "inconclusive." The high powered diagnostician who was sent the slides replied to my doctor with the words, "Thank you for letting me see this very interesting case," which I suppose in plain English means "I don't know what the hell is going on but I'm an expert so I'm not supposed to say that."

The one good thing that came out of all that is that the pulmonologist I was assigned to in the hospital was the very wonderful Mark Ellenbogen, who has been my doctor ever since, except for a two year period which has recently ended (described below). Dr. Ellenbogen is the rare doctor who really sees his patients as people, not as isolated body parts.

For most of the next nearly twenty years, I didn't let this illness slow me down very much. While I got short of breath easier than most people, I could still do most things without too much difficulty. I was careful to get a flu shot every year, as coming down with the flu or a cold would often lead to pneumonia. Once in awhile, out of the blue, I would suddenly have extreme difficulty in breathing, and these episodes, like the pneumonias, usually ended me up in the hospital for a few days.

Also, in the mid-90's I was diagnosed with a nasty infection with "atypical micobacteria," a germ similar to TB (although non-contagious), and underwent a long course of antibiotic therapy to try to wipe that out. My lungs remain contaminated with a more common bacteria, pseudomonas.

So, when my lung function started declining about two years ago, it was debilitating, as my baseline was so low. Now I get out of breath from any "major" effort--walking to the next room, taking a shower, getting dressed, etc.--a genuine pain. At that point, I was put on 24-hour oxygen, and was forced to stop working and apply for Social Security Disability (which, to my surprise, I was granted very quickly). Just to complicate matters, I also developed chronic pain syndrome in my knees and hips, another problem of unknown origin, which increased my level of disability.

Fortunately, I'm no longer in pain--after traveling the world of Boston chronic pain specialists, I found a doctor who diagnosed the problem as originating in my lower back, which I was skeptical about since I had no pain in my back. He recommended a treatment called radiofrequency ablation, in which certain nerves in the lower back are deadened with targeted injections of radio waves. I was told that the results I could expect were: (1) no improvement, (2) partial improvement, or (3) total improvement, lasting anywhere from six months to a year and a half. I was very scared, but decided to go ahead. The procedure, which was performed in mid-July, 2008, is done while one is sedated but awake, and I have a few very vague memories of what went on, but whatever it was that they gave me did the trick, because it seemed that no more than a few minutes had passed (it was actually considerably longer) before I was told that they were done--and I had no more pain! This surprised even the treatment team, because they said that even when it was successful it usually took a few days to kick in.

About the time my lung function started to decline so precipitously, Dr. Ellenbogen referred me to another pulmonologist, saying that this new doctor worked with lung transplants, which he thought I might need. So I started working with Dr. Peter LaCamera. He sent me to "pulmonary rehab"--an exercise program to try to build up my stamina. I had a great therapist, and I really tried, but each time I would get sick or get so weak I couldn't continue, and after four attempts over more than a year I gave up on that. I then did get a transplant consultation, but the transplant team concluded that the level of infection I had would just contaminate the new lungs (since they leave the trachea and upper bronchia intact). In addition, the post-transplant life they described (not only the anti-rejection drugs, but also frequent invasive testing), didn't sound all that appealing.

It was at this point that I decided on palliative care and hospice. During my last hospitalization, in October, 2008, I asked to meet with the palliative care team and was introduced to the wonderful Dr. Lochlan Farrow and his team, who really listened to me and respected my feelings.

Also at this time, I went back to Dr. Ellenbogen, wanting him to be my pulmonologist of record, based on our long history together. I also have a very supportive primary care doctor, Dr. Linnea Meyer, but these days I don't see doctors much...instead I see my hospice staff, including Kathy, my visiting nurse, Celeste, the social worker, and Nancy, the chaplain (whom I like because she does not talk religion--which doesn't interest me--but is just another supportive listening ear).

Thursday, January 29, 2009


It's amazing how having visitors cheers me up, even when I'm having a rough day. On Monday, Susan Stefan was here again, bringing delicious Chinese soup and lots of good conversation. She's going to be speaking on a panel for PBS and we talked about some points it would be good for her to make. I suggested she might want to talk to Bob Whitaker, who has done some great research on how psychiatric research shows that the drugs don't help people, and that the people who improve most are those who are off drugs.

Then on Wednesday Bob came, bringing a wonderful Chinese dinner from Chang Sho, and he, Marty, and I had a great evening, even though I'd been feeling lousy most of the day and had been lying in bed with the bi-pap machine most of the afternoon. Bob told us about his new book that he's working on (he's finally gotten a contract to write another book about psychiatry, which he had a hard time doing because now he's considered biased [!!!]), as well as his recently published book about the early civil rights movement, back at the turn of the last century. And then Marty talked about Israel/Palestine stuff--all the while we were drinking a nice bottle of wine (Bob was very impressed by my rabbit corkscrew) and eating delicious food, and I found myself feeling much, much better.

Today I'm feeling weak and tired again. I've got another nice visit to look forward to--on Sunday afternoon Chris Hansen and Shery Mead are coming from New Hampshire, bringing lunch. The Super Bowl is that evening, which we'll probably watch, but I'm not all that interested since the Giants lost to Philadelphia (although at least we had the satisfaction the next week of seeing Phoenix clobber the Eagles).

I think it was Monday that Kathy Norman and Joan Rapp from BU were here, which was another nice visit.

And on Tuesday, Anne, my new Personal Assistant, was here for a few hours and she got all the ornaments off the (very dead) Christmas tree and the tree itself out to to the street. She'll be here again tomorrow and we'll work on getting more stuff put away. I find her comfortable to be around, which is as important as getting the work done.

Monday, January 26, 2009

President Obama at last!

On Tuesday, Marty and I watched Obama get sworn in...almost impossible to believe, after all these months of hardly believing it was real. It was wonderful watching the crowds, all races, all ages, celebrating together--a group that really looked like America!

It's been a rough week on a personal level, though, with a high level of fatigue; some days I could do a few things (like cook something or do some straightening up) before retreating to bed; other days I just didn't want to get out of bed for much.

But the important thing is that, even on the bad days, my spirits remain high. I've still got lots of things to look forward to. The days are perceptibly longer, even if still very cold. Various people have promised to visit soon--Eric Rosenthal will be here in early February (he said he stood outside among the crowd to see the Inauguration and it was a memorable experience. Sally Zinman called this evening and is planning a trip for early February (once her daughter's health situation is squared away). And I think I have several local visitors coming during this week.

Also, Ann, my new PA (personal assistant) will be starting on Tuesday. We're going to try just a couple of hours, at first, to see if we're compatible and comfortable with each other. When Cheryl and Marianne were here they spoke very highly of her, and I enjoyed meeting her a few weeks ago.

It's late and I should go to bed. I have that odd late in the evening burst of energy idea what that's all about.

Monday, January 19, 2009


I get acupuncture at the New England School of Acupuncture, at a greatly reduced rate. I hadn't gone for over a month, first because I was feeling too weak to get out of the house, and then because they were on semester break, but I started again last week with a new student intern and a new supervisor (students give the treatments in close consultation with the supervisor, who is a member of the faculty). My new intern is Nate, a young, slightly geeky looking guy, who told me he'd be using Japanese techniques, different from the Chinese acupuncture I'd been getting from two different students since I've been going there. I was quite surprised when he brought in the supervisor, as the two previous ones were Chinese women, and this was a very obviously Jewish-looking guy named Martin Feldman (almost the same name as my Marty, who is Marty Federman! I took it as a good omen.

When I was there last week I was having an awful day, almost too weak to go, although Marty managed to get me out of the house. When Feldman came in at the end of the treatment to ask how I was feeling, he said in a very confident tone, "We are really going to help you," and I took the whole thing as an omen. And, amazingly, I woke up Tuesday morning feeling remarkably good and have felt good all week. This morning I was somewhat more short of breath than I've been (but still incredibly better than last Monday), so I am very curious to see how I feel when I get up tomorrow morning. Last week, instead of going out for lunch, as we often do when we're out, I told Marty I was too tired to even sit up and I just wanted to go home and get into bed, and I slept most of the afternoon and evening. Today we not only had lunch, but ran errands (Home Depot, Whole Foods, and the pet store), and although I was quite breathless when we got home I certainly wasn't exhausted, and I didn't need to nap. But it's pretty late now and I'm going to sleep. Tomorrow will be a good day even if I feel lousy--it's Inauguration Day!

Saturday, January 17, 2009

Good days and bad days

I call it a good day when I have enough energy to do little things (make some breakfast, feed the cats) without getting too exhausted. Exertion always leaves me short of breath, but on a good day I can recover quickly when I rest. On a really good day, I can take a shower and get dressed!

On a bad day, I'm exhausted even without doing anything, and it's hard to catch my breath. Any exertion seems too much of an effort. I find myself drifting off to sleep a lot.

I can usually tell, when I wake up, if it will be a good day or a bad day. When I can put together a string of good days--recently I had a string of nine--it makes me feel much more hopeful. People have commented on how well I am handling things, but I don't know any other way than taking it one day at a time and trying to get as much pleasure out of each day as I possibly can.

Thursday, January 15, 2009

What does hospice mean to me?

Since I've been a hospice patient, I have experienced genuine peace of mind. I feel confident that I will be taken care of, in accordance with my wishes. There will be no more trips to the hospital, trips that, with few exceptions, accomplished very little. There will be no more needles or invasive procedures. My comfort is the center of hospice philosophy. This is totally in line with the model of the mental health system we've been promoting all these years, with very limited success.