The days pass...

Just after starting to think that things were going pretty easy--that I wasn't suffering like people with painful conditions and stuff like that, the pretty scary breathing episodes I've been having since yesterday got me really worried that maybe things are going to go much faster than Iwant them to. It's comforting to think I have lots of time--time to enjoy things, and arrange things, and not feel rushed...I don't want to lose that.

Cathy, my nurse, was here earlier, and increased my morphine dosage, which makes me feel more spaced out, but does ease the breathing. I thought I would sleep for awhile this afternoon but first the housecleaners were here and then when I was just drifting off the bell rang and by the time I made it to the front door the postman was just getting back in his truck after leaving a slip for a package pickup. I yelled and waved but he drove away, which means that Marty's going to have to go pick it up. He was here for awhile and should be back later. Julie was here when Cathy was here, and she (Julie) was really venting that Marty needed to be here more (I think she's scared that she's going to get stuck taking on more than she feels able to do). She has no patience for Marty's kosher dietary habits and says that I shouldn't either, which of course I can't do. He doesn't mind what I eat but he just won't eat certain things and that's the way it is.

Julie drove Florence to the train early this morning--it was so great having her here, and she said she'll be back in mid-December. She stopped in to say goodbye and gave me such a loving hug.

While Marty was here the phone rang and we knew it was somewhere in the bed but we couldn't find it even though we could hear it--very frustrating. By the time he finally found it the person had hung up--I just played the message a little while ago and it was Nancy, the chaplain, whom I really want to see again. She said she'd call back later.

When we were out yesterday, Sally Zinman called, and said she might come from California for a visit--that would be wonderful! Also, I've gotten two calls from Judy Turner-Crowson, from London, and she's sending me some books and stuff and says she's thinking of me a lot. I asked her to get in touch with Rachel and Liz for me as I can't seem to find current e-mail addresses for either of them, and she said she would.

I also had a good talk on the phone yesterday with Judy, who seems to have done her crying and we were back to our old laughing and reminiscing mode, which was great.

Dying people in fact and in fiction

Film critics often say that characters with fatal diseases don't look really sick--that real diseases are messy and ugly, so one way of looking at things is to be grateful that I don't have something that makes me throw up all the time, or be wracked with pain. Except for the chipmunk cheeks (from the steroids) and the shortness of breath, I just look like someone who moves very slow.

Today started out well--I was able to make myself some breakfast, feed the cats, and get dressed (all things that usually require major rests in between) to be ready to leave a little after nine when Marty and I drove to Sudbury to see Evelyn and Kyle in the Morris dance performance they do each year at the Unitarian Church winter solstice festival. Afterwards, we went out for lunch, and then Marty, Florence, and I drove back to the house (Julie, Jim, and the kids were running errands), and spent about twenty minutes with Jim on the phone talking Marty through the process of getting their TiVo running so we could watch the Giants game from the beginning. The Giants lost to Philadelphia, although they clinched the division when Dallas lost their game--they certainly look Super Bowl bound!

During the game, I was getting more and more short of breath and really struggling, so Marty went downstairs and got my bi-pap machine, which definitely makes it easier to breathe, and then I fell asleep for a few hours. Now I'm downstairs and heading to bed for real.

Figuring out how do do stuff

It's getting harder to figure out what a good day is. I would call yesterday a good day, even though I had to ask for help to make a batch of meatballs, and had to carefully figure out how to do most of the work sitting down. Florence was great--I got a little tearful because I felt so dependent, and she just comforted me in the best possible way. As a result, there are now 17 meatballs in the freezer (full of good healthful stuff), so an easy dinner can be just chopping up a few veggies to doctor up some bottled sauce, boiling water for spaghetti, and defrosting some of the meatballs. Marty was very enthusiastic about the idea of us cooking some beef stew together, which will be fun and will take care of a few more meals.

Of course, after the major exertion of cooking, I had to take a nap. It's pretty amazing how I can just drop off to sleep.

I'm also working on getting things more organized, so the bed doesn't end up piled with stuff--it's a good thing it's a big bed, but some nights I had just a little corner to sleep on! Julie bought me a good size carrying box in which I can keep stuff like the books and newspapers I'm reading, the remote controls, and so forth, and Marty got a bed tray so I can eat more comfortably in bed and I'm probably going to start using the computer on it too--there are some days I just don't feel like sitting up, and I imagine there will be more of them as time goes on.

On Friday, we went out to run some errands--it just feels good to get out, even if it's not doing something special. I took a couple of broken bracelets to the jeweler, and we went to a store to see if we could get some more comfortable kitchen stools (I like them, but Marty says he can't sit in them for very long). But the stuff we saw was wildly expensive (and some of them required an eight-week lead time), so for now we're sticking with what we've got.

My "salon" is slowly getting off the ground. On Thursday, Susan Stefan was here and we had a great visit--she brought wonderful pastries and we discovered a shared passion for lapsang soochong tea, so I brewed a pot of that and served it in beautiful English bone china teacups. My hospice volunteer was supposed to come on Friday, but he called and said he had a cold and would let me know when he was better (probably early next week).

Charlotte was here yesterday, mainly to take Florence back to her house for a few hours, and she was a great example of how not to be a good visitor for a sick person (although I'm sure she meant well)--she just kept asking me about my symptoms, prognosis, and other stuff I really don't want to talk about endlessly. I vented to Florence later, and she pointed out that if that happens again (and it surely will, as so many people don't know what to say), I should just say "I really prefer not to talk about it," and change the conversation to something more interesting.

I'm going to send out some e-mails and make some phone calls to see if I can get some people who said they'd probably stop by to actually come (Dorothy Dundas called the other day but hasn't called back, and I had an e-mail from Debbie at BU saying she'd stop by).

I got a very odd phone message from somebody who got my name from Marianne, wanting me to be on some kind of advisory panel, which indicates that Marianne isn't aware of how sick I am (she definitely was on the list for the big explanatory e-mail), so I'll have to give her a call, and also call this guy and find out if it's something I can actually do. I welcome intellectual stimulation, but I don't want to take on something if I can't follow up.

I should end this now--I need to get dressed because we're all going out to see Evelyn and Kyle in the Morris dancing performance they do every year at the Unitarian Church in Sudbury. Marty was vacillating about coming (he had a conflict with one of his endless meetings), but I think finally decided last night that he was better off doing something for enjoyment.

His foot surgery is scheduled for December 22nd, which is going to be a challenge all around, but we'll get through it somehow. He'll stay here during the few days he needs to be off his feet, and his doctor said he won't be able to drive a stick shift till the wound heals.

Trying to make sense of it all

It's been less than a week since I formally became a hospice patient...or client...I'm not sure exactly what the politically correct term is. Since I've spent my whole professional life trying to do away with the term "patient," I think I'll stick to client here, until a better term comes up.

It's funny that I've spent so much of my life being depressed, but I'm not depressed now. I feel calm and very much in control of my life. COPD is uncomfortable, but not painful--the biggest problem is the frustration I feel when every little chore (emptying the dishwasher, folding laundry, etc.) turns into a big job so that I need to lie down and rest for a bit (and often fall asleep).

It has been comforting to finally be dealing in a truthful way with how sick I am. I wish I could remember the name of the very nice doctor, during my last hospitalization, who replied to my question about that by saying, "Let's face it--without a lung transplant (which was being considered at that point), you don't have a very long life expectancy." She arranged for the people from the palliative care team to come in and see me, and it felt so good just to talk honestly and openly about what I wanted and what my needs were.

"My last hospitalization"--that feels so good to say! After so many trips there, during most of which I felt that very little was being done for me, it's good to know I'm not going back. This last one, however, was helpful. I was so weak I could barely stand, and Dr. LaCamera said I needed to be on IV antibiotics. I asked him if it was possible to bypass the ER, and he arranged for me to be admitted directly to the floor, which saved hours of time, and also the $100 ER co-pay which I always feel is so unfair. After a week of antibiotics in the hospital, and another week at home I'm back to my previous baseline--low, but at least I feel good enough to do some things, even with difficulty.

Marty is determined to get me out of the house as much as possible, even though it's become quite a production. And it's true, that going out gives me a lift. Yesterday we went to the library, and I now have a new stack of books (I took the last stack back basically unread, as I tend to grab a bunch of different things that I hope will pique my interest).

I am certainly intending to stick around for awhile--I want to see Obama get inaugurated, and then be around for the Super Bowl as well (especially if the Giants, now 11 and 1, are in it). After that, I'll set another goal. I think getting into hospice so early in the process is a good thing for me, as it allows me to enjoy all the "goodies." Yesterday, Celeste, the social worker came by, and talked with Florence, Marty, and me, and then took Marty into the living room for a separate conversation, which I'm sure he needs. I think he's taking things harder than I am. Poor Marty--when he met me I was an active, vigorous person, always flying off somewhere, and now I can't even get out of the house without his help. I told him weeks ago "this is not what you signed up for," and he keeps assuring me that he's not going anyplace.

It's five thirty in the morning--I've been up for a few hours and I guess I'll try to get a bit more sleep.