Friday, February 06, 2009

An Unwanted Journey: Day 1171 - Period of Uncertainty


It's been on my mind all week. I've been feeling better, so much so that, other things being equal, the direction of my health would lead me to believe things will continue to improve. And, in a kind of naive empirical way, that is precisely how I have been thinking about my life.

That translates into activities such as leaving the house for a visit to Chapters with my wife on Tuesday with nothing but my walker to remind me that mobility can sometimes still be a problem. I am reading again too - not just browsing book and magazine covers. Friends, when visiting, have brought over more books, more journals, and even more CDs for me to spend time with. It's been amusing actually to have my wife complain about the maze of books and magazines surrounding my bedside making access to my bedside tables that much more difficult.

The hospice care nurses have been postponing visits more frequently these days too. When everything is going well, there isn't much to do for them. Today, when one of the nurses did come for an on-site visit, she was very pleased to see that the "butter-fly" injection site was still as healthy as the day she initially set it up, over 10 days ago. She was also very pleased to see that I have been averaging only 3 bolus infusions of the "breakthrough" morphine medication every day, down from the initial 10 to 12 applications when the self-administered PDA pump was first used (in addition to the "breakthrough" morphine, I still have the "maintenance" fentanyl patch).

But for all the good news, my naive empiricism keeps wondering when the tide will turn - at which point I guess it's no longer naive. Each day, I have bouts of uncertainty about what's coming next. So when I start to nap a little more - which I've been doing the past couple days - I begin to wonder if the drowsiness is the first sign that the "good days" are coming to a close.

Or I might eavesdrop on a conversation between my wife and somebody on the phone obviously asking how I'm doing. I will hear my wife talking about her father's battle with cancer and the good days he had before his final turn for the worse. Or she might be heard saying something about "just enjoying the good days that we have". It's not just my wife, or course; other friends and family members can be heard saying similar things.

Here's the thing. I want another 30 years or so. I want the obituary to say something about dying peacefully in his sleep at age 90. But that's not going to happen. Will it?


Anonymous said...

Go for it Don!
I could go for the "in his sleep" bit but not the 90 years.
Whoopy that you are feeling better and able to get outside. That is really, really good news!
Shame on you for eves dropping but remember it goes the other way too. They have thought that someone would not last long and they went on for years[I know some examples].
So I repeat "GO FOR IT"!
A Anita

Lorna Scott said...

Hi Don,
I truly understand what you are talking about! It is such a journey - looking forward to better days - and when you have them it is hard to not wonder when they will end.

I believe that you have a good friend who said some days you have to just live minute by minute. And that means when you are on top of the world - then enjoy every minute.

And believe you will get better and have many more better days yet. Think back to a month ago - did you think you would get out to Chapters again? You can get better. Previously you echoed my thought about my husband - why can't you guys be the miracles? Someone has to be and I think the two of you are the best candidates!

You have made marvelous progress in the last couple of weeks. Could it be that your body has now nearly finished healing from surgery (yes, it can take that long!) so there is more energy for other things?

Before Christmas I thought my husband was coming to the point where things were just going to get worse and worse. But it appears that he was still feeling effects of radiation. He has been so much better the past month. I only realize now that I had started losing hope and had started questioning the miracle. I have renewed hope now -for both of you!

None of us really knows when our time will come. Enjoy every wonderful minute that you can. When those minutes, hours, days and weeks come, hold onto them and celebrate! It is really all any of us can do.

Take care and best wishes - maybe 2 trips out next week!

Anonymous said...

When my father was diagnosed with cancer he was "given" 6 months. He lived for 4 and a half years before the disease took him. During that time I was conflicted about why he had to "suffer" but later on I understood that his journey wasn't over yet. He still had work to be done in this world before he could go on to the next world (heaven). Your blog and your life experience is still informing/teaching those around you. It will make them stronger and richer in their faith.

Andrea Yurkiw