An Unwanted Journey: Day 1132 - Creativity and Confusion

Maybe stating the obvious will help me get back into writing regular blog entries.

Publishing personal blog entries depends on personal energy levels, which in turn depends absolutely on my mix of pain medication drugs.

One day, the mix leaves me sleeping or too sleepy to compose coherently. While I was still in hospital, I would still find 5 minutes somewhere to edit my material. That was usually enough. Now, it's not even close. In other words, editing is by far the most time consuming part of publishing my blog entries (the few there are). Unfortunately, research and creative writing remain my favourite activities in writing blogs.

This all means that I can no longer trust myself. I will regularly have to request my sons or wife to check each entry to see if they think it is legible, not to mention interesting.

Sorry for the delays....

An Unwanted Journey: Day 1121 - Tuning

If you've ever played a stringed instrument, then you'll know that tuning the strings quickly becomes one of your definitive and habitual exercises. From the time I picked up my first 4-string bass guitar, through the years of beautiful symphonic sound on a 12-string acoustic guitar, and than back again to the relative simplicity of finger-style guitar picking on a 6-string-acoustic guitar, the discipline of stringing and tuning my acoustic guitars has been a constant reminder that nothing beautiful can possibly be heard without the tedium of correcting for slightly out-of-tune strings.

Everyone develops their own tolerances. And those tolerances are rarely discerned by anyone other than the small fraternity of acoustic guitarists with virtually identical musical interests and practice regimens. It's just as true for electric versions, of course, but there's something pure and unadulterated when done with the simplest of tools and no additional electronic tuners available.

Cancer care in a home setting has some similarities. The regimen appears strange from the outside looking in. Gathering of tools (often the simpler the better - such as a spiral bound 360 Fat Book log), setting up columns and daily question matrices, scanning the carryall basket for medications, ensuring towels, cleaning products, etc are readily available. Simple pre-planning efforts which set the stage for a day when either you or the disease seems in control.

Sometimes it seems like the simplicity of scanning your setting is about indulgence. The clock has to in exactly the right place, the thermometer right where you would expect it even with eyes wide shut. I don't know why, but somehow part of my pre-planning now involves ensuring the HD-TV controllers are lined up and ready to roll so that CNN in HD has become a necessity before I begin swallowing daily pills.

But then there are other days like today when no matter how close my ideal and actual settings were to one another, I still felt out of control. We identified it later in the day as a minor panic attack. In my case, such attacks are related to a sense of asphyxiation. Clearly, my surroundings have not been set up to induce such feelings, so when they do occur, I have to make adjustments, something as simple as opening the patio doors to a world of bitter cold temperatures and and winds that feel like they just came off the corner of Portage and Main in Winnipeg.

I'm continuing to tune. I'll probably be less diligent about responding to personal email requests (especially if I've covered off the gist of the request already in another blog entry) in the hopes that I can get back on track with regular blog posts. Even then, if it's obvious that I'm not writing what I meant to write, I'll turn to M. for editorial advice, thereby delaying posting an entry even longer. As I continue to deal with pain medication balancing acts, sometimes all I'll get to accomplish in a specific day is to get cleaned up and find just enough awake time to sleeping time.

This is all new territory to me right now. Be patient with me and I'll endeavour to communicate what it feels like from my perspective.

An Unwanted Journey: Day 1115 - Nostrils above the water line

I've had quite a few personal inquiries about my health this month. It's simply not characteristic for me to have written so little. You can sometimes infer problems from brevity or infrequency, from excessive use of parenthetical expressions, and occasional over-reliance on pictures or vain attempts at humour.

So, I've waited patiently for energy to return only to discover that I required a blood transfusion (my hemoglobin having fallen from 97 to 77 since leaving hospital for home care). I've turned away visitors in the hope that regaining my flagging energy had an inverse relationship with the number of people I saw face-to-face each day. There is a relationship, of course, but nothing so simple as a direct inverse correlation.

Trying to find an appropriate balance of baseline and break-through medication as well as deal with the additional muscle spasm pain has meant becoming totally obsessed with numbers, intervals, and responding to slight variations in my 0-10 pain scale throughout all my waking moments. In addition, it became overwhelmingly obvious that I was no longer able to hold apart the barriers between my own private world of thoughts, reflections and outright dreaming from conversations and behaviour acceptable in the "real world". [I don't know how many times I'd catch myself watching my wife and sons trying to figure out if something I just said or did was a prelude to a hallucination, a full-blown hallucination, or an "aha" moment in which they had just been privileged participants to the world of genius that is Don Spencer.]

So I will simply bring that material back into the public arena as I can and let you judge for yourself.

In the past week, I've had a full-day at the Grand River Regional Cancer Cancer for a blood transfusion. I've been learning more about morphine and some of the other pain medications available. For now, we'll stick with what appears to be working; namely 10-mg dosages of morphine administered as the break-through medicine. This means, all other things being equal, that I'm actually taking less morphine than earlier in my treatment. The baseline is fentanyl 50-mg dosages administered over 72 hours. The spasms I'm deal with by shifting my body position and realizing that they won't last long.

When the pain is under control, I'm watching more great HD-TV shows with my wife, tracking how the Raptors respond to their new coach,  using the wheel chair to navigate around the house, and visiting for short periods with friends.

Thank you to all who have kept in regular contact as I struggle with pain. You can probably expect fewer posts in the immediate future as we get the basic daily routine perfected. But there's nothing preventing you from offering your own ideas and reflections!

An Unwanted Journey: Day 1109 - Visits as Artifacts

Using the term artifacts was a conscious decision in the early 1980s by some colleagues and me when we started up a part-time business. We wanted to create and distribute software to museums, galleries and archives which improved their effectiveness in documenting collections, and sharing that information with other publicly funded institutions.

One of the key terms at the time in federally funded museums across Canada was "material culture". Material culture was anything physical that survived over time and provided material cultural historians with objects for study. The idea was simply that historians tended to use surviving texts, got paid reasonably good money, and taught in universities. Material culture historians tended to have at their disposal objects made or modified by human culture and then recovered during archeological endeavours. These historians got paid poorly, if at all, and taught tour guides. The word artifacts was part of a clear trend among such poorly paid "professionals" to regularize and normalize what they did.

I had already taken a leave from doctoral studies in Canadian medical history at the University of Waterloo. One of the trends I monitored was something called Public History, the practice of history outside the academy. Examples of pubic history practitioners included educational consultants, museum curators, historic site interpreters, and authors of historical fiction.

When friends, family, and colleagues visit me these days, I sometimes feel like I am engaging in Public History with a specialization in out-patient palliative care treatment for patients dealing with metastatic colorectal cancer. Since our visits don't consistently generate artifacts, thinking this way is a bit of a stretch. If I blog about a visit, then the blog itself becomes a "virtualized" piece of material culture.

In fact, this blog is a truly a kind of Public History whose value becomes greater the more people there are who take similar initiatives.

I know...it seems the connections and implications I want to see from blogging become more tenuous with each passing day. But if the blogosphere is opening up communications channels, increasing frequency of communication, and providing a 24/7 online resource for others interested in this artifact, then I'll grudgingly accept the previous criticism.

As for the visits of just the last couple days themselves...

Mom and Dad - always good to see them and get/give the requisite hugs and kisses.

M.S. from work - a great colleague whose wit and wisdom I truly miss daily.

C.D. and B.M. - an introduction, some reflections on assets based loans and the various financial crises in the United States, and catch up on family events and functions.

The best of the best is, of course, catch up.

An Unwanted Journey: Day 1107 - Warning: Genius at Work!

...Thursday morning...

"So, what are you going to write about today?"

"I have no idea."

"Well, then, maybe it's time for another break."

"Maybe, but sometime's when I have absolutely no idea what I'll write about, that's precisely when a great idea or reflection appears."

...later Thursday after a long visit with Mom and Dad...

"So, did you figure out what you're writing about? After all, you appear to be nodding off to sleep. Your hands are already slipping off the keyboard."

"I need a few minutes shuteye..."

...late Friday morning...

Zzzzz. Phone rings and the nurse arrives. The sun is shining through the patio doors, across my thighs, and adding additional warmth to the sheets on the medical bed through the patio doors.

What was that about yesterday's blog?

An Unwanted Journey: Day 1106 - Doing Drugs

The word on the street is that I'm having problems dealing with the opiates coming my way these days.

I've never been a user of opiate-based drugs, either for pleasure or pain, apart from those bleary weeks of April 2006 when pulmonary embolii threatened everything. The difference between now and then is that I seem to be having more problems and fewer benefits.

True, it's been a bum wrap for opiates over the years, since the only patients deemed sufficiently coherent to express gratitude have since "left the building". I'll want to get right back to this business of coherence momentarily, but for now let's briefly talk about the other kinds of problems associated with opiates.

Doing drugs doesn't symbolize a mechanical or mathematical problem for me.

I can find the painkillers I need. I can store them and keep them dried and protected. I can even tweak the administration schedule on my Pocket PC (HTC 6800) with alerts in Pocket Informant waking me at just the right time. I can figure out the dosages required for both baseline and break-through medications ahead of time.

So for the most part, the mathematical and mechanical issues are under control - with one exception. I can't seem to get Windows Mobile 6 synchronizing accurately with Windows Vista Ultimate. But that I'm even having the problem means I'm part of a small technical elite. It doesn't set the stage for appropriate sympathy.

What should garner some sympathy is that I have terminal metastatic colorectal cancer with a prognosis of "weeks, maybe small months" (whatever that means in common speech). Even so, I have been the beneficiary of an extraordinary number of email, phone calls, and visits whose intent was simply to express love and affection. I find this all very touching.

But I am having difficulties documenting what I am doing, thinking, and creating coherently and consistently. If you haven't already noticed, I'm fatigued and in a state of confusion when writing that simply wasn't there before.

My work life has been about analysis, discovery, creating optional solution scenarios, proposals, clarity, and communication.

Now I feel those skills and attributes slipping away.

***

Originally, this post was going to explain why a blog entry hasn't made it to the publishing stage recently. There were lots of funny stories I was going to share, stories that had all four of us here at home laughing out loud at my expense. And I didn't mind it at all. Laughter truly is healing.

But now it's beyond being funny. At this moment, I am completely exhausted with the effort of writing. I'll be back as soon as I can. See you then.