February 6, 2012: filling in a little
I'm very grateful to Carol for composing the blog entries that she has, and to Celeste for organizing and facilitating the whole thing. I am going to supplement what Carol wrote not to contradict her at all, but just to fill in parts of the picture.
At the time of the diagnosis I decided that I wanted to be guided by two principles: take an optimistic rather than pessimistic view, and proceed as close to normal as possible. The first I think you'll all agree we have managed pretty well. Many of you have commented on that, and in fact, it is the upbeat nature of Carol's most recent writings that prompts me to write this. The second is harder to do. For one thing, I am tethered to my feeding machine most of the time, and while it is portable (and while I can be disconnected from it any time I want), it is still a presence in my life that needs to be considered whatever I choose to do. The other block to living normally is that I just don't have the energy to do the things I used to do and still would like to do. So most days have fallen into a sameness--actually two possible samenesses--and neither can be described as very normal, not for me at least.
Most days I am at home and I spend a great deal of time in my chair, sometimes napping, often reading or watching reruns of Law and Order on TV. I can get up and move around the house when I want to (taking the feeding machine with me), but the fact is that except for my desk all the way upstairs where my desktop computer is, I don't have much reason to be elsewhere, and I don't have much else to do. Near my chair I have my i-pad and my phone, I bring a book to read, and quite important to me, I have a display of items that represent the outpouring of generosity and good wishes that I have received from so many of you. There are several photographs of Dylan in plain sight, so my chair, which I suppose comes dangerously close to being a man cave, is not a bad place to be. The other routine day is one on which I have a doctor's appointment or some kind of treatment. My chemotherapy sessions take the better part of a whole day, so when I have that, I don't hit the chair until late afternoon, and then I'm usually pretty worn out and need the rest I get on other days.
But more and more I am finding ways to get out. I am lucky to have certain particular friends--you know who you are--who take a lot of initiative in providing me with opportunities to get out and do something. I had a session of reiki (a soothing energy-directing therapy) last week. I found it very relaxing, so I am returning for another this week and may make it a regular thing. We've gone out to play bridge a few times, and as we have said, we have even returned to ballroom dancing, which we enjoy enormously but which does require a lot of energy that I don't have, so we have to be sure to take it easy on the floor. When the weather is more agreeable I hope to take short walks, even down to my corner, just to get some fresh air and muscle movement into my routine. I don't know when I'll be able to return to the hiking club, which I really miss. Their shortest hikes are three miles at twenty or twenty-two minutes per mile. Ordinarily that is not a challenge, but I am far from being able to walk that distance or at that speed now. Getting back to hiking is a major activity goal for me. At the beginning of the illness I had a very hard time concentrating on anything that required extended thought, so I stopped reading (in the middle of a good book I will add), but I'm doing better now, and I am hoping that I can return to our novel club for its March meeting. I'm halfway through the March novel, and I look forward to rejoining that group when I can.
So you can see that the positive, cheerful, optimistic descriptions you've been getting have their foundation in reality, and I am happy to confirm that all in all things are going about as well as we have any reason to think they might.
But that, of course, is only a partial view, and there is more to be said.
Someone--I don't recall who--said, "You must be angry. This is so unfair." Yes, I am very angry--but at whom should I direct my anger, and what good would it do? Yes, it strikes me as very unfair too, but what can I do about it? In certain private moments I allow myself to dwell on my anger because I don't think it's a good idea to pretend otherwise, and in all likelihood, when my condition grows worse, I will need to express that anger more often and more openly. But it is there now, and it would be dishonest to deny it.
I am also very sad, even if I smile and make jokes and appear to be otherwise. In fact, I would say that my emotional dial has two settings now, normal (that is, I react to whatever is going on as almost anyone would), and unprovoked sadness. There are times when, for no reason that I can discern, my throat tightens and my eyes fill with tears. I'm not talking about the times when I have to face a very sad reality, which does come up now and then. I just mean that the Great Switch Flicker chooses that moment to set my dial to sad, and I react accordingly. It usually doesn't last that long, but it serves as a reminder to me, as if I needed it, that we are headed to where there will be more tears than laughter.
And related, I am filled with sorrow, mostly about the future that awaits Carol and the kids. Even as I type this that is a difficult topic to contemplate. I hope that my family and friends won't forget them, and won't let them be too lonely, not only in the immediate time of their loss, but afterwards too.
I've enjoyed visits, and phone calls too, from several of you. Carol has mentioned a few of my visitors by name, but there have been several others, and I always appreciate the company and diversion these visits provide. She tells me that when I have company I am animated, and she is convinced that such animation has a positive effect on my health. I am still unable to keep up with email responses, so I hope any of you who have written to me in the past few weeks and not heard back (which would be most of you) continue to be understanding and trust that I have read and in all likelihood reread your messages. A few of you are very faithful (persistent seems like a negative word right here, maybe suggesting nagging, which I don't mean at all) correspondents, and I treasure your messages more perhaps than you know.
So you can see that I would also say that the situation is more positive than negative in many ways, but I had a few things to say that Carol might not be in a position to comment on. Thank you for taking the time to check out our blog, and thank you for all the kind words and actions you have sent my way. I am aware that some of you have shared this blog address with friends I have not been in touch with. I am very grateful for that; it has resulted in contacts I wouldn't otherwise have had.
