My fingers are getting thin! What a wierd thing to notice. I was rubbing my hands together just the other day and noticed that, when I put my fingers together, they were not as thick as they once were when I was busy with my hands, when I played guitar. It's a sign. It's yet another very concrete example that my body is .... less than it was. I know that I have lost muscle, fat and tone and, while Dianne keeps my weight up by pushing food on me, things have redisributed. I'm not the man I once was. I'm dying. I'm watching myself die, slowly but surely. Wow!
It's not that this is my first realization of this. It seems I've been ready for this for a long time, but I am definitely more prepared now and I wanted to talk about this with you to share what it's like waiting. My last several posts were more spiritual in nature, and I hope they were meaningful to some or most of my readers, so this will be a bit of a change of pace.
From a medical point of view, I am definitely on a different track than I was for the previous nine years or so. Tests, results, treatments, surgeries, side effects, doctor visits, psychologists, oncologyists, orthopedic surgeons, radiation technologists, on and on. That has been my life for so long that I have been truly a child (or captive, perhaps) of our medical system. But that's more or less over now and I'm not sad to see it go. In some ways it was a positive thing because I was fighting the disease as best I could. But my body wouldn't cooperate, my warranty period was expiring, and there was nothing more that could be done to cure me or to slow things down more than I had been able to. That's when I made the decision to discontinue treatment, yet continue to "fight" for quality of life and for a "good death". But then I found that I had to prepare for that too. There were plans to be made, things to do, affairs to wrap up, steps to get in place. Thankfully, Dianne is great at that sort of thing and threw herself into it with gusto!
So here's where I am. I am now under the care of the Dorothy Ley Hospice program and the Toronto Grace Palliative Doctors program, with extensive assistance from local community resources through CCAC and other organizations. How wonderful it is to be in a place where this support is available and free. As it takes a lot of pressure off the medical system as well, it's a good thing all the way around. I have a nurse who comes in and sees me every day, checks my vitals, my meds, etc. My new palliative doctor will drop by every couple of weeks to monitor me and see where I stand. This is critical to me as I will need help identifying the signs that indicate "it's time". My doctor already spent two hours getting to know me and my family and my wishes, in my own home! How great is that? I also have a palliative nurse practioner I can contact as needed. I have an emergency number for the doctors which means I can see one right away if necessary. I don't need to be rushing to emergency rooms if I have an attack of something, which is a great relief. As many know, it is not pleasant waiting for hours in an emergency department before anything is really done. No more.
I am also set up now for when the time is right, to enter the Hospice residential program. While I want to be at home as long as possible, I don't really want to die in the house. I don't want my family to walk by a room thinking, "This is where it happened". So, if all goes well, I would prefer to pass at the Hospice and we're as set up as best we can for that. The Toronto Grace also has a couple of beds that they keep available in case things change too fast. More back-up and support. And I have equipment to help at home. A hospital bed in the dining room for when I'm just too tired to get upstairs. Walkers and poles to help with stability. An oxygen generator for sleeping and portable oxygen bottles which really help when I'm out somewhere and need something to keep me going (other than Red Bull!).
I also have a DNR - a "Do Not Resuscitate" order that tells health care and emergency workers that I do not want my life to be artifically prolonged through CPR, entubation or anything like that. I'm dying and I don't need anyone to pursue heroic efforts to keep me going so I can die again later. It makes no sense, particuarly if I end up with broken ribs or on a ventilator. I can't think of much worse than that. Having that piece of paper gives me more peace than I had ever thought.
So I feel really good about all this. I'm ready. We all know what to do and I know that Dianne will execute like the tough executive she is! And I know that it will be good for her to have these things to do, to keep her busy in those first few days and hours. We're good to go!
But that's the procedural side of things. There are still all of the emotional things I have to deal with. But having this all in place gives me time and license to do these things. For now, it's about acceptance. Clearly, I have accepted that I'm dying, that I'm going to die. Dianne and I have talked a lot about this and we're both very aware of this. And I'm also accepting of the fact that are simply things I will never get to do anymore. No more kayaking, no more lofty goals. But will I get to our friends cottage again this coming summer? Will I even be around that long? These are things I just don't know. That's my next challenge.
Will I know when it's time?
Not much changed from my last post. I'm doing pretty good. Just the fatigue. I sound like a broken record, but I'm so tired all the time and find it so incredibly frustrating.