Friday, September 19, 2008

An Unwanted Journey: Day 1031- Sleep, the Great Healer

The surgeon didn't complete the left lateral segmentectomy - the liver resection. Too much cancer, especially outside the liver in the walls of the abdominal cavity. But in order to make the determination that surgery was no longer an option, he did have to perform a laparotomy, leaving me with a chevron-shaped incision about 14" long.

That's part of the reason why I was given an epidural for pain relief, something that, despite the fact it requires special nursing care and observation for a few days, left me with minimal pain and problems getting around. I still had general anaesthesia, of course, but despite that, I was awake for a good 2 1/2 hours in the intensive care unit starting at 10:20 am a week ago Wednesday when I regained consciousness.

I thought I was fully aware of everything going on around me, but it wasn't until I was being wheeled out of intensive care to the acute care observation unit and saw my wife in the hall outside talking to the surgeon with tears in her eyes that I realized the outcome wasn't good. I felt no serious pain, but I knew then that we were going to have a tough conversation.

It took me another couple days before I had my low moment when my wife and eldest son visited me in the hospital. The realization that no curative options remained and that all decisions I would make going forward would be ones I had hoped not to face for many years left me weak, sober, and terribly, terribly vulnerable.

Physically, I felt reasonably good. In fact, by Sunday afternoon, I was getting into the car to go back home. By Monday afternoon, I had rented a medical bed, watched Stranger Than Fiction once again, written another blog, and was wondering what I would do to pass the time until the following Monday when I would meet the medical oncologist to discuss chemotherapeutic options.

But general anaesthesia does a number on you that takes a while to work through the body. By Monday night, all day Tuesday, and again Tuesday night, I felt like the wheels were off my physical recovery and that if this was life I didn't want any part of it. There was no sleep, just a few minor moments of rest between trips to the washroom as my digestive system turned back on and adjusted itself accordingly.

When you don't sleep, thoughts and images tend to shape your experience. I distinctly remember the chaotic thoughts of comedy versus tragedy shaping my physical experience both nights, only broken occasionally by the realization that it was just my digestive system wreaking havoc. I wasn't really participating in some kind of cosmic dance or struggle for my soul. I was simply in pain with delusions shaped by recent thoughts and themes.

So, in moments of clarity, I decided to eat almost nothing while my system adjusted, rest when I could, and avoid thinking too much. It worked. By Wednesday, I began regaining perspective. Wednesday night I slept for a couple hours at a time. By Thursday I was able to entertain my parents for a visit in the afternoon. Thursday night I slept very well. Sleep is miraculous.

But yesterday wasn't without incident either. I awoke to a desire to do things and take action, however minimal, only to discover that my skin was bleeding around the edges of the tape holding the incision dressing to my abdomen. We drove to see my family physician and he confirmed my diagnosis of a skin sensitivity and prescribed a topical antibiotic/corticosteroid cream to be applied directly to the affected areas. I drove the car home, took off the incision dressing bandages myself, and applied the cream - and then almost collapsed from fatigue.

Since then, I have recovered energy, felt more like eating again, and been able to find much needed sleep. I've even enjoyed watching Discovery Channel specials on the four-winged dinosaur and the dinosaur mummy, Leonardo.

There will be many more tough days ahead. In fact, if I wasn't already fully aware of that, all I had to do was listen to my family physician tell me how sorry he was for the outcome of my surgery, to offer me access to him and his office, unscheduled, anytime, and to applaud me for my practical attitude and thinking about palliative care and about the balance of quality and length of life - in other words, offer his condolences. So much said in so few words.

But it's Friday morning. My skin abrasions are healing. I'm no longer taking anything stronger than an occasional extra-strength Tylenol for pain, I'm writing another blog entry (at length), and I'm wondering how I can ever keep up with my research and reading interests. It's sunny and we have forms to fill, questions to prepare for the medical oncologist and visits from friends to anticipate. It's another good day. Thanks mainly to sleep.


Eric said...

Thank you for taking the time to write this blog. I simply can't relate to what you are experiencing but I can say this was a riviting read.

Maybe you could consider writing in a blog format then collect it into a book. Your philosophical perspective at this time in your life combined with your ability to articulate your thoughts could be a project that might bring some pleasure for you and your readers.

Don Spencer said...

Hi Eric.

You know there's an irony here. I distinctly remember thinking that a writing/publishing project might make sense as I was discharged from my first bout with colorectal cancer. I even, as you know, did a YouTube video about An Unwanted Journey, one which culminated with a fairly optimistic conclusion.

I never did follow up, mainly because it was just so good to be thinking about a life without any evidence of disease, one in which I could entertain thoughts about my career and a future with my wife and sons just like other people. My unwanted journey seemed, at that point, to be simply a tale of persistence in the face of difficult circumstances. In other words, there didn't seem to be much of a conclusion.

I distinctly also remember thinking that such a story of hope might be useful to other patients dealing with colorectal cancer, but that my story wasn't really complete or even honest without more time. Now that the I'm dealing with metastatic and unresectable cancer with only palliative chemotherapy available for treatment, the plot seems relatively's only the timing now.

Can that make for a useful or interesting narrative? I honestly hope so, but I have to say that I don't like the way it ends :)

There are a lot of books out there now about people who have dealt with cancer. I'd have to find a unique voice or perspective to warrant yet another variation on the theme. But what I can guarantee, Eric, is that I will consider it. Thanks for the suggestion.