An Unwanted Journey: Day 1286 – Sci-Fi Dreaming

May 2009 has been a month of pain and milestones.

Although neither I nor my hospice medical team have isolated the cause for the increased pain, we’ve made some progress on dealing with the symptoms. I’ve increased my use of dilaudid for occasions when I need to break through the pain, going from an optimal 2 or 3 times a day to sometimes as high as 12 pills when nothing else seems to bring relief.

It may be that I’m suffering some bursitis. One way to treat that is to use some anti-inflammatory medication. But because of the side effects of doing so (bleeding from gastric ulcers being the most worrisome possibility), we’ve left that as a last resort. Instead we’ve increased my gabapentin by a single caplet late at night before going to sleep. That has meant increased nightmares, some mental confusion, a lot more muscle twitching, and increased fatigue.

To give an example of fatigue, I regularly get up at 8:00 am for medication and breakfast. Afterwards, I tend to go back to sleep until fairly late in the morning. The rest of the day I tend to snooze unless there is something to focus on such as a book I’m reading, watching the NBA play off action, or talking with members of my family. I have not visited with friends or colleagues much at all in May.

Fatigue is insidious. The worst part is that when you’re not sleeping or snoozing, you feel like you’re watching your life rather than actively participating. If you add increased pain, fear of bowel incontinence, muscle twitching, and occasional mental confusion, then it’s obvious why I haven’t been out of the house much at all for this month.

On the other hand, I have enjoyed reaching several important milestones this month – our 36th wedding anniversary, my wife’s birthday, Mother’s Day, and my own 56th birthday. In another week, we’ll be celebrating my eldest son’s 22nd birthday. So despite the challenges, I am grateful not only to have been here for those milestones, but to have been in reasonably good shape, well enough to have thoroughly enjoyed the limited celebrations for each.

Reading has been and continues to be something which I can do, stealing time when in the washroom, when I’m well enough to sit outside in a well padded chair, or when TV is too dull or an NBA playoff game outcome is obvious. 

During May, I’ve dedicated my reading to science fiction, especially the works of Robert J. Sawyer. I borrowed the Quintaglio Ascension trilogy from the Kitchener Public Library and received 4 more Sawyer books for my birthday, having just completed reading 2 of them already since the 20th of May (Mindscan and Rollback). I also purchased and read his most recent book Wake and have just started reading Flashforward. Identity Theft will follow soon.

With the release of Star Trek in theatres this month, I’ve reflected on why I am such a sci-fi fan, especially of the Star Trek movies and television series (not so much the universe of books). To put it simply, Star Trek assumes an optimistic view of the future. So too does the work of Robert J. Sawyer.

As I approach the end of my life, optimism about the future, about the survival of humanity despite technology to destroy ourselves, about a world where cancer can be beaten … all these things bring me comfort. I wish the technology was available now to allow me to survive. But someday it will be available, perhaps even during my sons’ lifetime.

An Unwanted Journey: Day 1259 – Frightened and Fascinated

It’s a phrase I heard this week on CBC Radio One’s The Current. They were discussing the so-called “narrative arc” of the world’s most recent health scare, the swine flu, just upgraded by the World Health Organization to a level 5 on a scale of 6 (see the CBC article here). For the narrative to work according to expectation, there must be a moment when the reader or viewer is confronted with an ambivalent feeling of being both frightened and fascinated.

The narrative arc of my own unwanted journey has delivered fear and fascination repeatedly. Given the anatomy of colorectal cancer, maybe it’s more accurate to speak of a narrative arse. That’s an approach used to good effect by Neil Crone and others responsible for the 5th annual Crack a Smile Comedy Night to benefit the Colorectal Cancer Association of Canada. Like anyone else who enjoys laughter as the world’s best medicine, I’m more than happy to set aside discussions of the life-threatening nature of the disease, and to step away, even if only momentarily, from my terminal condition prognosis.

But eventually, one must return inevitably to the frightened and fascinated person dealing with this particular narrative arc. Again, because palliative home hospice care doesn’t have much to do with medical technology, I don’t have CT scans and MRI images to consult telling me that the liver lesions are growing or diminishing. I don’t have regular CEA blood tests indicating the changes of antigens indicating the progress of cancer in the body. All I have to go on is how I feel.

In other words, despite my fascination and curiosity, my daily life proceeds much like anyone else’s. Like most other people, except for the prescriptions, the Monday-Wednesday-Friday nurse visits (now with the nurse calling and going through a phone triage for the swine flu scare while sitting in her car in the driveway; depending on my answers, she either comes inside or notifies medical authorities about possible flu concerns), and the visit from the hospice doctor every couple of weeks…except for those things, I’m like most other people.

That’s where the fear, depression and anxiety surface. I keep surviving – that’s the good news. This month will see a few more milestones crossed off my list, including our 36th wedding anniversary tomorrow, M’s birthday the following week, my birthday the week after that, and then my eldest son’s birthday in early June. Back in late December, thinking such thoughts was a bit of a stretch. Now, I see no reason why I will not only survive, but be doing well enough to celebrate - quietly, to be sure, but with as much gusto as I can muster.

The bad news is that I have no idea how much longer I’ll continue like this before the inevitable decline occurs.

But I fully intend to enjoy all the moments and milestones I can. I’m going to get up, do some more reading and writing, enjoy the spring weather, take some photographs, purchase Starbucks coffee, talk with friends on the phone and during visits to our home…in other words, push the worries aside as much as possible.