An Unwanted Journey: Day 1102 - Goals

Category	Goal (measurable)	Progress (%)	Lesson
Voiding	2 litres (minimum)	94.25 % 1885 ml	As close as I can get to the baseline, realistically.
Blog	An Unwanted Journey: Day 1102 - Spirituality (#5)	100%	Good to get this put to bed; D., I hope this answers most of your questions. R., no drama involved. Agnostic and atheist are not as accurate terms as non-theist. There will be no "death-bed" conversions!
Walker	20 steps out-and-back using only the walker and a backup cane for balance.	150% 30 steps out-and-back physical path.	I'm regaining strength in my legs, and the pain isn't overwhelming. Still concerned about DVT and PE.
Visits and Calls	No in-house visits. As many phone calls as necessary.	100%	No family/friends today in person; some good phone conversations.
Cabin Fever	Admit to issues; discussion of communication steps.	100%	Daily work inevitable. Toastmasters strategy works - "tell 'em what you're going to tell 'em; tell 'em; tell 'em what you told 'em.

An Unwanted Journey: Day 1102 - Spirituality (#5)

This will be the last post in the sub-thread on spirituality. Although I could easily write another several dozen entries, I don't want this blog to be consumed any further with this topic, for reasons which should become evident below.

I think it was 1982. There were 4 couples gathered around a dinner table in a building that has since been razed on the University of Waterloo Campus. Each of the graduate students in the group had been working with a history professor in the graduate program who "specialized" in mentoring students from evangelical backgrounds through the treacherous waters of secular graduate studies. With some students, he was successful. With others, the result was what he would term an unmitigated failure. All of those at the table were "failures".

"So, Don, do you remember when you first began to doubt?" someone asked. It was a clear allusion to the testimonial type meetings often found midweek in Baptist and Pentecostal prayer services. Individuals were encouraged to relate how they first came to give their hearts ("and minds") to Jesus. Any further changes were, by implication, insignificant. No personal evolutionary development in spiritual thought was considered possible.

It was conversion only that was the reigning metaphor. Convert one way, and the keys of heaven were yours. Convert another way, and they would unceremoniously be ripped from your hands, indicating the worst of all possible sinners - someone who held the truth and then surrendered it willingly, wilfully.

The table erupted in laughter, with everyone else in the room clearly wondering what was so funny about the mystical Anabaptists, or the stern and "oh-so-assured" Calvinists and Zwinglians, or - my speciality - the tightly knit, mild mannered, proto-Fellowship-Baptists of a group led by Pilgram Marpeck in cities of southern Germany, Austria, and Switzerland.

Don't laugh! I could easily have made a very comfortable living teaching Radical Reformation studies in many university campuses across North America and Europe.

This story is meant to illustrate what it was the led me away from evangelical Christianity to where I am today. I will go into no further details. Each milestone has been part of a journey of development, a journey whose itinerary has given me wealth beyond measure.

It included, among other things, a decision to let questions of morality and ethics dictate my spiritual interests. Issues like the limited roles of women in the church, the fear factor used so brutally in the fight against rights for gays, lesbians, bisexuals and transgendered persons.

It included a refusal of the notion of the infallibility of scripture. Historically, one cannot deny the failure of Christianity, especially when dogma trumped praxis by means of proclamations of the infallibility of person or dogma or text - slavery, racism, and other 'isms throughout church history. Crises in the history of Christian religion and spirituality are often linked with surrendering logic and reason to revelation. When revealed truth is seen as limited and symbolic (the finger pointing at the moon is clearly not the moon), then I have no problems with most religious thought and practice.

It also included a realignment with modern evolutionary thought. Darwin loves you every bit as much as Jesus does.

***

So to conclude...

It wasn't about an emotional event, some kind of personal betrayal, failure, or conflict between ideal and actual. There were plenty of those, naturally, but they didn't determine my world view.

There were many milestones in the last 36 years, each of which was truly significant to me. My response, as it is with cancer, was further study, open dialog with others, and an inflexible demand that no matter how many mistakes each of us may make along this road, hindsight should never be confused with foresight.

Mistakes? I have made an incredible number of mistakes. But overall, when I hold up my evolving thoughts about spirituality and religion, and compare them with my responses to cancer, I feel pride. In either case, I claim nothing more than an attempt to find truth, to give words a chance, to tell stories, and to find peace wherever it might be hiding.

An Unwanted Journey: Day 1101 - Goals

Category	Goal (measurable)	Progress (%)	Lesson
Voiding	2 litres (minimum)	100 2250 ml	2 litres a day has got to mean something about getting excess bodily fluids out
ROHO Insert	get components from Medigas setup and tested	100	every little bit helps when it comes to reducing pain; this insert is definitely more comfortable
Blog	Spirituality sub-thread #4 re friendship	100	Most people are smart enough to wear more than one hat at a time; give them the benefit of the doubt
Wheelchair	Into the living room, family room etc.	100	I'll have to alternate walker and wheelchair challenges
Visits	Limit to 1 visit, 2 people	100	Great visit with 2 colleagues at the same time in the early afternoon; too many phone calls throughout the day made it seem like visitation wasn't under control, as did dealing with the opiates for pain medication

An Unwanted Journey: Day 1101 - Spirituality (#4)

R. is 4 years older than me. K. and M. are respectively 1 year older than me. So I'm truly the baby in the group. Given the anti-intellectualism of much that passes as Pentecostal these days, it's a little unexpected that at least the two of us prided ourselves on having skipped a grade in elementary school. Each of us had deep connections with each other and many conversations that would last hours parked just outside our respective homes talking about how we were going to make a difference, how our own brand of Pentecostalism would mould the world into a far better place.

Those conversations were spiced occasionally with casual asides about how T.'s breasts were truly spectacular, about how idiotic some of G.'s rabid anti-intellectual sermons were, about practical jokes we would plan on the church's ushers, custodians and assorted leaders (there were some that we would never undermine because their personal integrity was beyond reproach or doubt).

R.'s recollection of precise details of who said what when and where made it like having our own internal group historian. To this day, I think that even when he's making it up, it sounds like so much fun that it absolutely must have happened that way.

K. provided the glue of deep and abiding loyalty and respect for each of us. It was a fine group indeed, a very fine group.

If my Mother and Father were a strange couple, then our foursome was just as strange. Looking and listening to the 4 of us yesterday in my family room, you'd have to wonder what keeps such disparate characters together.

If friendship provided a means for me to change, to become more driven by positive ideals, and to separate myself from the constraints and restrictions of standard Barrie life and thought, it also preserved me through times of betrayal, the gradual death and dying of my personal Pentecostal perspective, and to adapt my overall Christian perspective to university life, reflection and serious attacks on other friendships. In other words, for some other people, the experiences I had in the Pentecostal Assemblies of Canada should have been enough to drive me away in utter cynicism without so much as a casual passing interest in those whose paths kept them ensconced at Hi-Way.

Having said that, I still cringe at the unreality of dogma which asserts that what makes Pentecostals distinct from evangelical Baptists is the former's belief that the initial physical evidence of being baptized in the Holy Spirit is the vocalization of sounds that are supposed to be tongues of men and angels. It's equivalent to a Baptist demanding one adhere to an assertion that the first physical evidence of being baptized by water is that your clothes get wet very quickly. Well, duh!

By now in this sub-thread you should be getting the message that the content of dogmatic religion is never really as important as those on the inside claim it is. In fact, the content is often completely off the wall and involves blind adherence to facts and theorems. While on the inside, the content is about revelatory truth. It demands that you do not examine critically the fundamentals because once you do, you'll realize all you've got is someone else's assertions about reality that were revealed to them by some authority beyond question. Where the buck stops isn't really the problem. It stops somewhere, and you simply have to bite your lip and accept the fact that you've surrendered part of your personal integrity to someone else, assuming you want the affiliation with the religious group to continue. With ultimate concerns, where and how you decide to surrender your personal integrity is extremely significant.

An Unwanted Journey: Day 1100 - A Voiding Christmas

Christmas came early this year. Today, in the early afternoon, I had my wife and two sons with me in the family room watching the guys enjoy some new Playstation 3 games being played on the HD-TV big-screen. Memories of similar occasions all the way back to the early Nintendo years came flooding back alongside these fantastic images of the most recent incarnations of those games.

Another time, 3 childhood friends were sharing themselves, their values, their memories, and their affection for me. As we said our farewells and I watched them get back into the stretch limousine for the trip back to the Hamilton airport (an item crossed off one of my friend's personal Bucket List), we all realized the possibility that this would be the last time all of us would visit with one another. It was perfect - sadness and joy inextricably linked in recollections of 4 "seniors" enjoying their childhood and youth all over again.

Shortly after that, the doorbell rang and in walked my youngest brother, after having just arrived at Toronto Pearson International Airport and bringing his more modest Ford rental along the 401. My brother is a Canadian through and through, preferring Tim Horton's coffee (which he picked up on the way here), while I preferred the French Press Starbucks bold variety offered by another friend in a gift box brought to me during a visit from earlier in the week.

Part of why my brother is visiting is to get stories, stories of years and occasions when his memories are minimal or non-existent. Always happy to oblige with stories about M., and me, about my grandparents, about my uncles and aunts, about childhood friends and neighbours, I think we got his American Thanksgiving weekend off a very good start.

Time is too short these days to make avoidance a habit. So there were also moments when I played the role of facilitator, attempting to ensure that important questions were asked and reasonable answers provided. In the actual meetings/visits, I could sense the success of doing so, the sense that full frontal nudity may be appropriate right now. At other times, depending almost exclusively on email, it was far less evident to me that holes in the walls were being plugged and that communication had been improved. We'll know soon enough, I suspect.

Always and within a few moments, the health questions would come my way. How long did I have to live? What could they do to help my family with funeral/life celebration arrangements, etc? What about some few remaining/outstanding quarrels? Was I really going to finish the blog sub-thread on spirituality? Would I consider doing some audio recollections for younger siblings who simply weren't around for some of the earlier Spencer family events?

And invariably, as we talked about health and death, the issue of voiding and catheters would arise. People my age don't need a lot of time or sense of security to wax eloquent about the pain of being unable to empty their bladders. I have to say that one of the most positive developments in my health saga recently has been my spectacular success in regaining natural function in voiding.

As I start to get close to voiding 2 litres a day, I am getting more hopeful about reducing edema in the legs. The blood clots are a different story, of course, but anything which reduces the pain and swelling associated with my legs is good news.

As pain becomes more manageable, I find hope welling up at the same time urine and water are eliminated.

An Unwanted Journey: Day 1099 - Spirituality (#3)

My Father and I never talked about religion. He never went to church. He was clearly conservative in his political affiliations, but ideology per se never seemed to be the driving force. Instead, his political viewpoints traced a kind of common-sense fiscal conservatism. He was a practical man. So, not attending church wasn't some kind of statement about a theoretical agnosticism so much as it was an affirmation that Sunday was his one true day off work, once you included all the Saturday family duties tacked on to his paid work week.

Mom was the ideologue in the family. She was also a very young woman who will be the first to admit that she was still very immature when she got married and had given birth to her first child. Unlike Dad, she wasn't very practical at all. Also unlike Dad, she was very vocal about all her opinions and viewpoints. Those viewpoints tended to occur in the stratosphere, with the practical implications being irritating details someone else should figure out. She still has this endearing characteristic!

They were, in many ways, an odd couple, Mom having graduated from Grade 13, Dad dropping out in Grade 9. Mom being quite musical, playing the piano and having what I considered to be a very pleasing singing voice. Dad, on the other hand, seemed to be the only one on his side of the family that didn't make music so much as appreciate it. Apart from that, they clearly loved one another and each child born into the family...at quite regular intervals.

One of the most important gifts Mom and Dad gave to each of their children was freedom and independence. Whatever political or religious opinions we developed, they would never stifle expression or attempts to articulate those viewpoints.

So, when I decided to become intensely involved in Hi-Way Pentecostal Church (including mid-week prayer and Bible study, Friday night youth services, Sunday School, and two worship services), they might not like it, but they never prevented it. All the more impressive considering I had weekly concert band practices and depended on getting to and from school by joining Dad early in the morning (7:00 am) and late in the afternoon (5:00 pm). I also decided to purchase and learn the bass guitar, to lug it to at least 2 services a week, to join a new gospel band in the church which quickly became well-known enough and talented enough to travel to other churches in south-western Ontario for a modest fee.

As those church friendships developed, I gradually became interested in the Pentecostal "message" apart from just the social interaction provided by the church. I had some talent in public speaking, so I was invited frequently to participate as a "youth" speaker, to represent our church in regional events, and to lead meetings, Bible studies and informal discussions about practical theology. So by the end of Grade 13, not only was I ready academically for studies at the University of Waterloo in computer science or pharmacology at the University of Toronto, I was primed too for a "calling" into the Pentecostal ministry. In September 1971, at age 18, I left home to go to college, never to return except for visits and holidays.

By the end of high school, I was the perfect example of the insider/outsider - an outsider with talent and knowledge at school, an insider with talent and knowledge and clear leadership potential at church. And I had become quite skilled at adapting to new situations, making new friends, assuming positions of leadership, relishing chances to learn anything new and enjoying friendships as much, if not more, than family ties.

An Unwanted Journey: Day 1098 - Pain Crisis #2

This modulation of pain medication isn't easy. This afternoon, there was yet another crisis, coming a few hours after meetings with both the CCAC case management coordinator and the Paramed nurse.

This one scared me, my wife and my youngest son. From an estimate of about a 2 on the pain scale when the crisis started at 1:00 pm, and even with rescheduling the administration of Percoset twice (3 early or extra capsules) until 3:45 pm when my breathing started to drift back into normal territory, I had spiked to 8 at least twice, maybe 3 times.

My temperature was normal, but I had the cold shakes and could barely catch my breath at all. We had to call the pain management emergency number and get the on-call doctor to walk through the symptoms, the timing, the elimination of more serious symptoms, and the ordering of another prescription for Oxycodone without the acetaminophen. My wife is walking inside the front door now with the medication which I can take every hour until we've got this monster chained to the wall.

I'm exhausted and more than a little skeptical about progress, hopeful (always), but waiting for the evidence of better times ahead.

The experience of unbearable pain requires superlatives, something which writers are reluctant to do. Even now, as I've just described the afternoon's experience to my eldest son, I am reluctant to to say things like, "the worst pain crisis yet", because to do so I would have to have a perfect memory of all those other episodes. Perfect memory of pain doesn't exist, as far as I can tell, something for which I am grateful.

One highlight of the interview this morning was when the CCAC case manager asked me if I had any goals. I laughed and told her the story of when I entered my hospital room in the in-patient oncology unit on 10-Nov-2008. There was a white board by my bed with areas to write down names of the doctor, nurse, CCAC worker, social worker etc. And below that was another area for Goals. At the time, my wife and I laughed and I asked, "So I'm supposed to have goals now too?"

We talked a little further until I realized she was really asking about simple things to set as objectives, things like being able to get into the car for a ride around the neighbourhood, or to use my walker to walk the circuit from family room to hallway to dining room to kitchen and back again. Those are goals that I think I can manage right now. We'll start with taking 2-5 steps away from the bed holding on to the walker, turn around, and then walk back to the bed.

One of my perennial problems in life is having too many and too elevated goals. When I've set more appropriate goals (say, learning to chord and play the six-string guitar so that I could sing simple folk songs unaccompanied by anyone else), I've almost always done very well. Cancer is teaching me the same lesson all over again.

Tomorrow's goals are simple:

• complete the day without another pain crisis
• ensure I can prioritize visits from family and friends and make it possible for those travelling to see me to actually get a chance to do so without jeopardizing my health
• schedule a time when my wife can get out with friends without overly worrying about me
• write a blog

That's it. I hope my CCAC case manager would approve :>)

An Unwanted Journey: Day 1097 - Pain and Timing Are Critical

It was only around 2:00 pm this afternoon that the 12.5 mcg dosage fentanyl patch arrived at the pharmacy. We need this to establish a baseline of pain medication. It will be 12 to 24 hours before I begin to feel any symptom relief from the patch. In the meantime, and even afterwards, I will continue the Endocet for break-through medication.

Anything that helps me avoid the literal ups and downs, the growing number of leg and buttock cramps, the vain attempts to coordinate use of the commode with ideal pain relief cycles - that's highest priority for me these days. It's not working well. In fact, later this afternoon, pain spiked to 8 with a good 90 minutes required after that just to relax back down to a 3.

Did I mention that I am absolutely impossible to be around when pain spikes that high? Don't ask me any questions. Don't make any suggestions. I will eventually become human again.

I don't think it's possible for me to overemphasize the importance of pain management. Without low pain levels, I can't concentrate on anything significant. I cannot respond to email, Facebook notes, blog comments or even telephone conversations beyond 5 minutes duration. Even with pain medication that is starting to work to bring levels down to 1, 2 or 3, I will have days of drowsiness and lethargy. Blog entries and the cogency of what I write will undoubtedly suffer.

This upcoming week will be busy with visitors. We've cancelled all other off-site medical visits (they simply don't make a lot of sense anymore). We've also cancelled Red Cross visits until an undetermined date in the future when my wife feels she can't cope with my personal care. Right now she can handle caring for me herself.

My daily ambitions are highly curtailed. If I can help with online banking a little, if I can prepare a list of contact names and phone numbers, if I can do some research about end-of-life issues that aren't already fully organized - that's what I'll do.

I do ask for some patience from those who are writing to me personally and requesting I contact them for an appropriate time for a visit. Please remember that making that request puts the onus back on me - I may forget. The fewer requests you make of me and my wife, the more likely it is that we will be able to manage them.

Here's some further recommendations. If you'd like to visit, decide on a date and time and alternatives and make a specific request. If you'd like to call, go ahead realizing that I may not have energy for as long a conversation as either of us might wish. If you want to do something for me or my family, decide what it is, ask my wife if it's OK and then do it. But don't ask me to figure it out for you - thanks. It is the giver, not the gift that matters right now...believe me.

Thank you again for all your thoughts, prayers and support. I can't keep up, but I do appreciate what you are doing.

An Unwanted Journey: Day 1096 - Loving Me, Loving You

Somewhere in the past three years since the colonoscopy which diagnosed and located the malignant tumor in my rectum/sigmoid colon, I've made a mistake or two in the day count. I guess it doesn't really matter. But it is 3 years ago today that I had that fateful colonoscopy.

Anniversaries like that are significant. This spring, for instance, my wife and I celebrated our 35th wedding anniversary with a trip to Las Vegas. An unnamed family member celebrated her 60th birthday this year too. And today, 2 unnamed other family members - who just happen to be twins - will be celebrating their 33rd birthdays.

Anniversaries help us keep track of chronology, the flow of time, the investment of energy and resources, and so many other things. They also highlight the emotional landscape of our lives. Wedding anniversaries, birthdays of family members and friends, deaths of dearly departed people in our lives - it's not so much the number as the highlighting of the calendar, the reminder of the ripples in our lives of so many people, dead or alive.

I don't think too many of those who wrote to me yesterday or visited me today had any conscious recognition that I was thinking of the 3rd anniversary of my diagnosis. It was mere coincidence that so many loved ones chose that day to tell me of my impact on them, to reflect on my legacy for my sons, to whisper a tender phrase in my ear, to indicate a wish for some better days ahead with minimal pain and maximal enjoyment of life, to offer supper for tomorrow night, to request forgiveness of unintended infliction of pain, to laugh about girls who provided "memorable" moments for us as teenagers, and so on.

It would have been difficult to coordinate, even if somebody had recalled the significance of the calendar date. An aunt in Calgary, friends right across the country, a brother- and sister-in-law in China, friends and family in the tri-city area, a fellow patient in the United States - they all did their part today to move me away from early morning thoughts of pain and death to a more fundamental recognition that I am part of a sphere of mutual love and respect.

Whatever else happens now, however quickly, whatever the pain and sorrow, nobody can take today away from me. Day 1096 (three years) will remain a reminder of the ties that bind, the love that heals, the hugs, kisses and words that transcend all else.

An Unwanted Journey: Day 1095 - At Home Pain Crisis

We had so many medical people in to see us yesterday, as well as a visit from a group of colleagues from work, deliveries of medicines and a fruit basket from dear friends, and so on. A lot of activity. I should have anticipated that there would be consequences.

This morning at 5:00 am, I awoke from a lengthy sleep in great discomfort, with slight nausea, and the need to visit the washroom. Doing so was the most difficult yet, with a lingering inability to get my breath back and stabbing pains throughout both my legs. In fact, I think there may be a clot in the right leg to match the large one in the left leg.

We made the emergency call to CALL NURSE from Paramed and asked about pain medications, thinking that since the kit had arrived from the pharmacy yesterday afternoon, we would have the supplies ready for the nurse to give me an injection of some kind. When she called back, we decided instead on repeating the dosage of Percoset from the 3:00 am administration of pain killers. It worked. I slept until 7:00 am and was then able to move with less pain into a seated position on the side of the bed.

But doing this has some implications and immediate side effects. The auditory hallucinations are back again with a vengeance and we will have to watch closely the upper daily dosage limit on the second component - acetaminophen (significant liver damage). Evidently, however, according to the pain specialist doctor who visited us yesterday, we can get a version of the drug without acetaminophen - in other words, with just oxycodone. This should allow us to apply a breakthrough administration of the pain killer as needed.

The clots and the pain crises have reinforced a sobering message from the doctor from yesterday. Although he, like virtually all other medical team members, is very reluctant to talk about how much time is available to me, he made it clear that he thinks we are talking about a matter of weeks rather than months or days. In the early morning, as I awoke less that two hours after administering my regularly scheduled pain medication at 3:00 am, I felt for the first time like time itself was slipping away. To put it simply, unless it gets better, my feeling was that less time would be merciful.

But now (at 8:00 am), with the pain mercifully reduced, there is a corresponding elevation of spirits and hope.

For my friends and family, the experience of the next few weeks will necessarily bring pain into their lives too. It can't be helped. Merely seeing me will remind them of the brevity of life, of other friends and family who have previously battled disease, of their own helplessness... My hope is that there will also be enough laughter, courage, and inspiration to provide them with resources for similar situations that arise in their future. We all need real-life exemplars that come to mind immediately when dealing with medical crises.

Being sick doesn't mean that I've been transformed into a fount of wisdom and courage, but I do fervently hope that my example helps a few individuals deal with their own crises.

An Unwanted Journey: Day 1094 - Spirituality (#2)

One of the things that I probably most took for granted in establishing my own religious viewpoint was that the context was unequivocally Christian. On neither side of the family was I exposed to individuals of different religions. There were no Buddhists, Hindus, Jews, Muslims, Sikhs, Taoists, or even admittedly atheists. About as far removed from the overall family Christian context one could get was to be Roman Catholic. Instead, it was the Congregationalist and Methodist denominational background that prevailed, especially as embodied in Canada as The United Church.

I was baptized as an infant at Central United Church, the church closest in proximity to the Royal Victoria Hospital where I was born in Barrie. But again, on both sides of the family, although that was the church of choice, it didn't seem to matter much. Attendance was irregular, there wasn't (as far as I can recall) much talk about religious issues - just weddings, funerals and a very occasional Sunday service.

So when Mom took me to Emmanuel Baptist Church, she strayed only minimally from the family standard. The deviation was small, but it was in a direction towards the religious right. The next deviation she took, and which I followed, was even further to the right.

My Mom's friend mentioned a church she had started attending near the Barrie City Hall on Mulcaster Street that was part of a small but fast growing denomination called the Pentecostal Assemblies of Canada. Theologically indistinct from evangelical Baptists, the central feature of the denomination was this business of being baptized in the Holy Spirit and the phenomenon of "speaking in tongues", something which my Mother's friend encouraged Mom to investigate more closely.

We started attending while I was still in primary school. It was here that I quickly started making friends who were different from my neighbourhood friends, all of whom were planning on graduating from Codrington Public School after grade eight into grade nine at Barrie North Collegiate. But both my Mother and Father had attended Barrie Central Collegiate and were big fans of the school's famous Barrie Central Collegiate Concert Band, led by the inimitable W.A. Fisher. One of the first friendships I made was with the son of my Mother's friend, someone whose plans to attend Central Collegiate and to be part of the concert band interested me.

I also recall wanting to start fresh in high school with new friends and with the socially advantaged and privileged kids in our neighbourhoods who played musical instruments with this social phenomenon of the Central band. In a way, it was my Father's musical tastes which helped shape this interest. I distinctly recall listening to Al Hirt and a whole host of big bands that he would play on the stereo system he had in our workshop downstairs. The trumpet was always the star item in the musical universe of the big bands, so I opted to play the cornet/trumpet when I applied to be part of the band.

Another friendship that was cultivated and that has last a lifetime in that church was established shortly after starting high school. M. has been one of my closest friends ever since. So as I began to develop independence from the constraints of neighbourhood friends, music and friendship were compelling aspects.

In addition, the services at the Pentecostal church were a lot of fun for young people. The music has upbeat, loud and emotional. Not only was there an altar call at the end of each service - similar to the Baptists but with far more emotional fervour - there was this very vocal and ecstatic business of speaking in tongues, people laying hands upon one another in attempts to "get" others baptized in the Holy Spirit. There were claims of miraculous physical healing too, with other mysterious "gifts of the Spirit" talked about in hushed tones - things like "interpretation", the ability to take a message delivered in "tongues" by someone else and translate it into an English message direct from God to those in the service; there was discernment and exorcism as well as baptism of adults by immersion in a water tank in front of the entire congregation.

To put it succinctly, there was a "cool" factor for a young person in attending the Pentecostal church, especially for someone finding his independence not only from his parents and other family members, but from the constraints of neighbourhood cliques and status groups.

Young people were highly valued in the Pentecostal church. In fact, at the same time I was establishing these new friendships, becoming immersed in music, attending a different high school with the "cool" and rich kids from across the city, the church had decided to build a brand new building on Anne Street. The church elders wanted the young people to help during the year or so when we moved to a temporary location on Collier Street, doing things like setting up and tearing down for Sunday evening services (those were the most exciting services of all!), and getting involved in using hammers and nails and assisting in the actual building of the new church.

So apart from the apparent disdain on my Father's side of the family for "holy rollers", the juxtaposition of music, excitement, independence, mystery, and most importantly, new friendships conspired to make the choice for Pentecostalism compelling.

(Next, college, university, betrayal, opportunity, and movement from the right to the liturgical centre.)

An Unwanted Journey: Day 1093 - Spirituality (#1)

A school mate from my high school years has renewed our friendship recently. As we've gotten to know one another better over the past few weeks, D. has been curious about how I've changed over the many years since we studied together at Barrie Central Collegiate, especially in regards to questions of religion. After all, in those days, I was known by my classmates as an evangelical Christian attending Hi-Way Pentecostal Church on Anne Street. In fact, I held leadership positions in the school Christian fellowship club and was often away on weekends singing in a Gospel band, playing the bass guitar, and sometimes preaching at churches throughout south-western Ontario. I planned to attend Bible College after graduation in the hopes of eventually teaching theology at the college level. So, yes, things have changed.

Responding to this request might be a little risky, I suppose. People normally take their religious viewpoints quite seriously and often feel threatened by those with different or ambivalent world views. But if I can talk about my journey with cancer with honesty and integrity, I don't think it's much of a stretch to do so with the specific spiritual aspects of the journey. But to provide context, of course, we need to go well beyond the 3 years of my unwanted journey.

My reflections here will necessarily be quite subjective. I make no claims to true objectivity. I just hope that the narrative is as honest and transparent as possible. It is not an invitation to debate or even an assertion that I've got it right now, merely a description of the trajectory of my religious/spiritual thoughts and feelings.

***

The way I remember it, religious thinking and aspirations were bundled up with the role of my mother and one of her close friends. As a family, we had moved from Minet's Point on the south side of Kempenfelt Bay to a lovely residential area near Codrington Public School in time for me to attend grade one. Just a couple blocks away from the school was Emmanuel Baptist Church, where my mother and I started attending shortly after the move. Every Sunday School class was completed by an invitation from the teacher for someone to "accept Jesus Christ as your Lord and Saviour".

Clearly I felt this was something that would please both my mother and the teacher, so one day I decided to do so. All I can truly recall from this period was a sense that I had made a decision to follow my mother's rather than my father's lead about religion. Dad didn't seem to offer an alternative, so the decision was simple and direct. As I drifted into pre-teen years, I stayed with the evangelical Christianity of my mother, but eventually began identifying my own ego with the ideology I had chosen. In other words, I started to establish independence in regards to religious ideology, even though it was still largely within my mother's network and general world view.

(Later, I'll go into a brief description of how personal experiences and friendship played a pivotal role in the next phase.)

An Unwanted Journey: Day 1092 - Home at Last

It's late Wednesday evening and I'm sitting up slightly in my medical bed situated right beside the family room's patio doors. I've just awoken from a long, recuperative sleep to the sound of my youngest son preparing some food for himself in the microwave. My wife is nearby, trying to get to sleep and asking me many questions about how I'm feeling, if there is anything she can do for me, if I want some food or something else to drink, if I need her to turn on the light for me, and so on...

In other words, it's wonderful!

Leaving hospital is an interesting experience all on its own. Once a decision was made to discontinue chemotherapy, the wheels were set in motion for discharge. As far as the medical system is concerned, once a bed is theoretically available, then all kinds of energy is released to make it a reality. Yesterday, for instance, the doctor had said casually to me in a kind of quintessential Columboesque "one more thing" moment - about an hour or so after communicating my decision to him about discontinuing chemotherapy - that I probably no longer needed the PICC line. Within another half hour, the PICC line was gone!

Then, in quick succession, I had the CCAC coordinator working with my wife and me to schedule home care nursing visits, arrange a visit from the occupational therapist, ensure prompt delivery and setup of the wheel chair, commode, and medical bed, and to prepare a preliminary schedule for a home assistance team to give my wife some relief from the 24/7 care she will be providing me. That was followed by an in-depth consultation with a dietician helping us both with ideas and recipes for a high-protein diet. Then there was a consultation with the spiritual care provider.

Well, you get the picture.

By 11:00 am this morning, all that was left was to get some prescriptions explained to us both, pull on street clothes for the first time in 10 days, pack up my computer and assorted electronics, get into the wheel chair and be transferred into the passenger seat of our 2009 Camry Hybrid. I thoroughly enjoyed seeing the snow on the ground and all the familiar streetscapes as we drove home.

Getting into the house was very difficult given the continuing edema in both my legs, but within a few minutes I was on the edge of the bed thinking "this is where I want to be!"

The occupational therapist arrived in the middle of the afternoon and was exceptionally helpful in getting orders for additional items needed to make the stay at home more comfortable and safe. She gave us suggestions to improve my safety in getting to and using the washroom (still not ideal).

By tomorrow, we will have the additional items and supplies needed to make the set up very close to that of the hospital room, but with all the comforts of home, the big-screen TV, the view of our backyard and wildlife, the comforting sounds of our house, and the absence of the white noise sounds of the hospital, the announcements of various emergency codes through the PA system, and the audible reminders of being amongst very seriously sick individuals.

The OT also gave us good suggestions about slowing down, avoiding euphoria and expenditures of energy which would only impede getting used to the new accommodations. She also recommended renegotiating the number and frequency of visits for at least a few days, knowing from experience just how energy draining those visits can become when piled up one upon the other.

Email and visits continued. But I tried, as best I could, to simply bask in the positive energy of our home.

I don't know what the days ahead will look like. Clearly, the deep vein thrombosis remains a serious threat. The edema in my legs continues unabated, preventing mobility while throwing my weight into the stratosphere. And, of course, the progress of the underlying disease itself makes the end game a frightening thing to anticipate.

Even though this decision feels right, and even though being home is so rewarding, I know that it is only possible because of our initial commitment to the treatment plan. There is no way I could be here enjoying the comforts of home without having given chemotherapy a real chance. There would have been too many "what if" questions and a sense that I had lacked courage to face the rigours of treatment.

Now, instead there is peace. We will move ahead slowly, enjoying our time together, squeezing every bit of happiness and fulfillment out of the opportunities presented us, relaxing in the natural joys and awe that are our biological, evolutionary heritage, and realizing that although everything changes there is still freedom in the way we face the future.

An Unwanted Journey: Day 1091 - The Heart of Life

Shortly after publishing yesterday's blog entry, there was a "code red" at the Grand River Hospital. A code red indicates an emergency that could affect all staff and patients, something like a fire. At the GRH, this means shutting doors to all patient rooms, turning off systems like air conditioning, and posting an audible warning to everyone. After the warning was issued, it became eerily quiet. About ten minutes later, the code red was cancelled, doors opened, and the A/C was turned back on.

Less than 90 minutes later, there was a second code red. When it was cancelled, the nurses made the rounds of the rooms, opening doors and reassuring patients that all was under control. Except this time, as the nurse left my bedside, I heard an audible gasp, followed by commotion as other nurses and staff came into the room. My roommate had collapsed in the washroom.

It wasn't until 5:30 am, when I was awoken for a blood draw and to take some medication that I learned what happened. My roommate had died.

He and his wife knew death was coming very soon. But for my other roommate and me, it was hard news. Each of us are having a tough time. Each of us are dealing with a lot of pain and anxiety. But the bottom line is that his journey is over. We still have some steps to take.

This is the face of cancer death. This is what "do not resuscitate" looks like. For me personally, it was like a signature. Death will happen. It will not be pretty. But even so, there are still some decisions you can make now that will affect the course of an admittedly short time frame ahead.

Now that I and my family have agreed to stop chemotherapy and face the future at home, a lot of things are happening very quickly. There were meetings with oncologists, dieticians, social workers, home care coordinators, spiritual care providers, and pain management team members. There was removal of the PICC line. There were surveys (the Edmonton Symptom Assessment System), visits from family and friends, correspondence, phone calls, another "shower on a chair" and, thankfully, an abiding sense of composure about our decision.

More importantly, there were gifts, gifts of compassion and affection. How can I say this? Friends have written to me with personal thoughts sharing the gift of heartfelt expression, words that mean so much more than the words themselves. There were gifts of humour, jokes, stories about family members with similar journeys, reassurances that all will be well for my wife and sons when I am gone, and admiration - gifts that I can never hope to repay.

All I can say is "Thank you!"

An Unwanted Journey: Day 1090 - A Little Composure

Her name is E. She is a close relative by adoption. She has been a faithful correspondent and supporter throughout my 3-year ordeal with cancer. I recall vividly once in 2006 while I was hospitalized when she said to me, "Sometimes a day at a time is too hard. When it is, just make it an hour at a time."

Several times yesterday and then again in the early morning hours of today as I struggled through the second phospho soda preparation, I would look at the clock on the wall and remember the wisdom in her words. And so I took it an hour at a time, managing the little crises as exactly what they were - little crises.

By close to noon, they were ready for me in the endoscopy unit and I was as close to physical readiness and composure as could be expected. As I lay on my side, I watched the gastroenterologist explore the colon, finding almost nothing of consequence, but settling in finally on the anastomosis of the original low anterior resection surgery from late March 2006. The granulation tissue surrounding the site where the remnants of the rectum and the colon were reconnected was clearly fragile and would ooze blood when prodded and when the doctor took her biopsy samples. There was just enough blood to have been the cause of the rectal bleeding. As far as the gastroenterologist was concerned, I could go home again.

But, of course, there is so much more to be determined now that this small piece of the puzzle has been found and put into place.

Later in the day, as my wife and youngest son and I consulted with my medical oncologist, we had to come back to the implications of knowing the source of the bleeding. All it really means is that blood thinning injections have caused, yet again, rectal bleeding. We cannot go ahead with daily injections. That would be too dangerous. This means that the venous clot in my left leg cannot be treated directly.

Here is where we all learned something from the oncologist that we didn't know before. We have probably all heard of surgical procedures used to dislodge blood clots, especially around the heart or major arteries leading from the heart. But, as it turns out, when it comes to venous clots, there are no equivalent surgical procedures.

So, it is what it is.

I have a clot that will probably stay the way it is for an indeterminate period of time. Because of the underlying adenocarcinoma (like some other cancers), I am prone to clots. When you add on Avastin, you intensify the risk. When you eliminate use of blood thinners, then the only defence I currently have is the IVC filter already in place to protect those clots or clot fragments travelling back to the lungs and/or the heart.

Where does this leave us in regards to chemotherapy?

Well, at the very least, Avastin is off the table; it's too risky. Unfortunately, it is the Avastin that is the component that provides the greatest hope in making my metastatic colorectal cancer a treatable, chronic condition. Without the Avastin, there is now no chemotherapeutic, palliative or otherwise, option to mitigate the risk of death from MCRC. In a phrase, the "cancer is going to get me". Although it may be clotting or bleeding that gets me first.

We can treat me with FOLFIRI, but I've already demonstrated high sensitivity to toxicity of these drugs and reduced tumor responsiveness. We can try a milder capecitabine in oral form, but again all that does is provide 5-FU in lower doses, meaning even less chance for any kind of therapeutic effect, even though the toxic effects remain.

Or...we can stop chemotherapy. This would mean transfer of primary medical care at the Grand River Regional Cancer Centre from my medical oncologist to the Pain Management team who would monitor me in regards to pain, test results and progress of the disease, and then help ease me over to hospice care as required.

As it turned out, my spiritual care provider also arrived in the room at the time my medical oncologist, my wife, and son and I were discussing the medical options. Afterwards, we talked with him about making such tough decisions. There were tears, expression of values, thoughts about weighing pros and cons, more tears, with an eventual composure in a decision which only needed to be ratified with my other son before being acted upon.

I will be stopping chemotherapy.

In the evening, my eldest son and wife and I reviewed the scenarios. True, I can no longer walk effectively. True, I am in much worse shape than before attempting palliative chemotherapy. But with the help of the pain and symptom management team from CCAC and with appropriate household equipment and setup, I think we can forge a home care solution that will allow me to be with my family and to find days of fun, fulfillment, and joy for the time that remains available to me.

Nobody is making any predictions about how long that time might be. But clearly, at least statistically, it's not long. My medical oncologist has had at least one patient who survived for close to a year, but given all my existing conditions, who knows?

But there is a sense right now of peacefulness, of composure, of acceptance about a decision for the road ahead.

An Unwanted Journey: Day 1089 - Indignity

Colonoscopy preparation is just about the least dignified thing in the world, even when conducted in the privacy and corner of your bathroom at home. But when done in hospital with a clinical attendant right there, a room mate only a few feet away trying to sleep, and with a body already exhausted to the point of utter frustration and hopelessness...there's true indignity in such an experience.

I had to turn away visitors today, for fairly obvious reasons. Still, when doing so, that doesn't mean you aren't in social need. In fact, it may be that at times like this you are most in need of support. The problem is that most of us, like me, are too proud and too horror-struck at the prospect of needing physical support when we are a ball of uncontrolled and uncontrollable angst and physical failure.

I find myself without borders today, without strength, without dignity, and, even though it's there, without support.

And, to make it worse, my carefully crafted email notes don't seem to be reaching their destinations. I'll try to figure that out Monday afternoon, but if you are one of the ones who may be thinking I've ignored your equally well crafted notes to me, rest assured. It's a technical glitch. You are on my mind.

At least it's only another 16 or 17 hours until the colonoscopy. Whatever the news coming from that procedure, there are some major challenges ahead, some very important consultations to take place with my oncologists, and some decisions to be made.

Today I can totally identify with Edward's character in The Bucket List (played by Jack Nicholson), who says, "Somewhere some lucky guy is having a heart attack..."

An Unwanted Journey: Day 1088 - Heroic Measures

Today, one of my medical oncologists and I had the "big talk". She had, of course, checked with my team leader before doing so, but given the difficulties and life-threatening issues I continue to face, and given that I was on the list for this weekend of patients to be watched "very carefully", the time seemed appropriate.

"Crises tend to happen late at night, on weekends, or otherwise when the people you might want to be on hand aren't. I think I know you fairly well from other conversations and consultations we've had in the past, so I want to ask you about what kind of measures you would expect to be taken in case a clot causes irreparable respiratory failure."

And so it went. We talked about my wife and sons, about discussions I've had already with them about end-of-life concerns, about powers of attorney, wills, life values, etc. It wasn't a long talk, but one in which she could go back to my file and make a notation about the patient's wishes regarding so-called "heroic measures".

Those who regularly read my reflections of an unwanted journey will readily anticipate how I responded to such a question - "Nothing heroic, thank you."

But the simplicity of the reply doesn't really do justice to the magnitude or complexity of the issue at hand.

I will want a follow-up conversation and notation to be made for my file tomorrow...possibly several further discussions.

The importance of today's conversation was to reinforce the fleeting nature of even the most well-informed expectations about survival and quality of life in the face of medical treatment. Nothing can be taken for granted...nothing except, perhaps, the values by which I live and my approach to ultimate issues.

In a way, I'm an open book. Sure, I'm stubborn, opinionated, quick to anger (and those are just my good qualities). But when it comes to approaching ultimate concerns with realism, I think I'm mostly on target - not overly pessimistic, not overly optimistic. As Havelock Ellis once said, "The place where optimism most flourishes is the lunatic asylum." I may be crazy, but I'm not that crazy.

My realism means that most of what I say and do will change; it's provisional. Tomorrow will mean I may modify the nuances of what measures I want taken in times of medical crises. Inevitably, it means changes provoked by further conversations with my wife and sons and other people with differing perspectives and even values from my own. But that can wait until tomorrow.

One of the highlights today was a visit from my Mom and Dad, driving all the way from Barrie through the rain only to have to navigate around the rain-drenched Kitchener-Waterloo Santa Claus parade to find their way to the Grand River Hospital. I don't care how old I am (55 to be exact), there's nothing in the world quite like a mother's caress or a father's hug and kiss. All by themselves, these are two of the best drugs ever administered.

Another highlight was a visit from the CEO of the company where I work, taking time out from the countdown to the next major release of our company's software. Without a doubt, he's the best leader and executive for whom I have ever worked.

And then there's my wife, my best friend, my confidante, my partner, my "person". Her face, her smile, her confidences, her loyalty and affection - well, if there is any medicine better in all the world, bottle it up and sell it for millions.

An Unwanted Journey: Day 1087 - Two Bodies

Even though I can't walk these days, I bet some of you are having a hard time keeping up with me :)

The landscape for my personal reality shifted yet again. We did the gastroscopy as planned at 11:00 am, which meant I couldn't eat or drink anything from midnight. I was already reasonably assured that the bleeding must be located in the lower gastrointestinal tract, but today confirmed that. Before being rolled into the shower on a commode chair, I dutifully went to the washroom only to be confronted with rectal bleeding - bright red and clotted blood as well. This was a clear indication that the blood thinners were causing the drop in hemoglobin and that they were doing so in the same lower half of the body as they had triggered in April 2006 when I bled much more vigorously and considered my life in danger.

The gastroenterologist performed the gastroscopy and confirmed that there was no evidence of peptic ulcer or any other site for bleeding in the upper GI tract. But this leaves the precise location of the bleeding still a mystery (although there are several excellent candidates). The gastroenterologist recommended and my medical oncologist agreed that I would stay in hospital over the weekend and prepare for a colonoscopy on Monday morning. The hope is that we can discover exactly where the bleeding is located.

In the meantime, no more blood thinners, no more pantoloc, no more IV saline, nothing except rest and regular food until Sunday morning. Then we'll start the colonoscopy preparation with no food, just clear liquids, phospho soda, and the inevitable urgent trips to the washroom - Sunday night is not going to be pleasant at all! In addition, yet another postponement for the 2nd cycle of my chemotherapy until the middle of next week.

Family and colleagues visited again today, always providing a respite and time to reconnect. The hospital's spiritual care provider and I traded some books we had each recommended for one another. I caught up with some wonderful email and comments from family and friends and even got this blog entry in place. Now, if I could only get the swelling and blood clot down in the legs so that I had some mobility, I'd be feeling pretty good again. Until then, I have two bodies - the top half and the lower half.

An Unwanted Journey: Day 1086 - Blood and Scopes

I hesitate to do a blog entry until the end of the day. Too many things can happen in a very short period of time.

Today is no different. My blood work shows an alarming decrease in hemoglobin levels over the past few days, especially since starting the blood thinners on Monday - from 128 to 78. Eighty triggers an automatic decision for a blood transfusion, which is exactly what transpired over the past few hours.

But before we did the transfusion, I had to get a stool sample for an occult blood test. I have seen no blood in my stool, but the test was unequivocal - there is blood. So where is it coming from? Back in April 2006, I was hospitalized for vomiting blood, but we never did an upper GI tract scope test to confirm the suspected peptic ulcer. Certainly peptic ulcers can cause blood to appear in the stool, even without any apparent pain.

Also in April 2006, I was hospitalized for what we discovered was pulmonary embolii, most likely caused by clots travelling from deep veins in the legs. Initially we treated that with blood thinners, only to have a serious bleeding episode in which I bled profusely from the anus. That was certainly one of the most anxious moments in my life. We stopped the blood thinners and inserted an IVC filter to block any possible blood clots from the lower half of the body migrating to the lungs. Since then, I've had no apparent problems with clots, until this week.

So tomorrow - Friday - I'll be doing the upper GI scope test (technically a esphogogastroduodenoscopy) to see if we can spot a peptic ulcer or some other underlying condition to explain the occult blood in the stool and, by inference, the drop in hemoglobin levels (anaemia). I will prefer to be as sedated as possible for this one, happy to see just the still photographs afterwards and get the results for my file. My hope is that we can continue with the chemotherapy afterwards and still be discharged by the end of the day. If not, what's another weekend in hospital?

My oncologist seems as mystified as I am. But to be cautious, we will not only decrease the dosage of the FOLFIRI by 20%, we will not even treat with Avastin tomorrow, since Avastin can be responsible for both clotting and bleeding in metastatic colorectal cancer patients. One less variable to consider, I guess.

One positive development today was another meeting with the CCAC coordinator who just wanted to reassure my wife and me about our plans for an occupational therapist to visit us at home. They will cover initial costs associated with additional equipment for the home and extend that coverage as required. Depending on what happens with the tests and treatment tomorrow, we may also need twice daily CCAC home care nursing to administer blood thinners sub-cutaneously, at least until I feel confident in doing so myself (my abdomen has a lot of "space", so it will be awhile before we run out of places to stick the needle).

One other thing to look forward to tomorrow is having a shower in the hospital. It will be the first time in my life that I've ever taken a shower sitting on a chair. Whoohoo!

An Unwanted Journey: Day 1085 - New Reality

Some things I've learned today accumulate into what I guess is a new reality, a new baseline by which I will set my expectations for days in the future.

Blood clots take a very, very long time to dissipate safely and successfully. It won't be a matter of hours, days, or even weeks. It will be a matter of months for the blood-clot-induced swelling of my left leg to dissipate. This means some major changes for me, including a walker to move everywhere until I can manage to get back to just a cane or just my own two legs. It may mean a home wheel chair as well as additional equipment and process changes at home to manage my home care. One thing it definitely means is daily or twice daily home care visits to inject me with anti-coagulants for the rest of my life. Blood clots and bleeding will be a major focus from now on.

Cancer might not be the thing that gets me. It could be a heart attack or pulmonary embolii that choke me to death. This realization lends an added worry and urgency to my medical care and the way my wife and I will deal with subsequent medical crises. No more will I delay trips to the emergency ward.

I can and will get my chemotherapy administered directly in my hospital bed this coming Friday and then be discharged by the end of the day to go home. It's important to recommence chemotherapy if I want to sustain any hope for holding MCRC at bay. There are a lot of monsters out there, but I'm getting good at using my incredible newly patented monster shrinking spray can on them. As long as I can keep them coming at me one-at-a-time, this seems like a reasonable strategy.

Framily continue to provide the spiritual nutrition I need. Phone calls (when the hospital believes I've actually paid my phone bills), email, Facebook comments, notes, inbox items, even Christmas ornaments remind me of the love that's out there waiting to be received. And unanticipated visits from colleagues and one of the hospital's spiritual counsellors rejuvenate me, just as the expected ones from my wife and sons energize me. Even when I think I'm physically in too rough shape to tell people to visit, when they arrive on the doorstep, I manage sufficiently well to enjoy the gesture and the company.

I may not need the comforts of religious language, but I can certainly appreciate how such language provides others with a means of sharing their love and concern directly and succintly. Communication is by nature a messy and problematic way of conveying and receiving messages, especially when we are talking about emotional realities. I think I'm getting better at the receiving end, finding the essence in what is conveyed to me in language which I can no longer use with integrity but which still provides a bedrock and structure for those ministering to me.

Finally, oncology is a huge medical reality. Over the past couple days I've met other oncology patients, nurses, and doctors, overheard stories of cancer diagnoses, and become attuned to what others are suffering or ways in which they have chosen oncology to help other people. Each person has a story. We cannot tell other people's stories effectively, but we can incorporate them into our own journey, sharing the comedy and tragedy as appropriately as possible.

An Unwanted Journey: Day 1084 - Legs of Steel

Unless you've had dramatically swollen legs (whether through edema or blood clots), you may not understand how painful they can be. You would certainly not appreciate how irrational fears surface about them reaching a breaking point and then exploding like a balloon.

Thankfully, my nurse today knew the sensation and pain of swollen feet and legs (when she was pregnant). It's not always the case, but a general rule among caregivers is that people can only give back sympathy or empathy for something they have experienced themselves. So, today when I shared with a technician in digital imaging how my world had collapsed in around me when I could no longer walk, she didn't really have any idea what that meant on a personal level.

People try, but experience is a teacher that transcends almost all others. A family member I referenced in a another post recently, who has suffered terrible pain for several years now, has tried to explain to me the pain of his legs brought about by thrombosis and the deterioration of nerves. Until now, his stories could never really resonate. Now I know.

Imagine being unable to lift or bend your legs. Imagine touching them and having no give back or even impression from your finger tips. Imagine them growing so large that you can't separate them appreciably. Imagine them being so painful that you need a walker just to hobble a few feet to the washroom. Imagine concerns about falling and having no way to get up again. Imagine telling a nurse that you cannot, absolutely cannot, manage getting into the shower, much less standing upright for a few minutes. Imagine the irrational concern that the swelling would continue until your penis and testicles were surrounded by rock hard flesh making voiding impossible for simply physical reasons.

So, you get a little of the picture. My legs are of steel, but not muscle. Unfortunately, the situation will continue for a while at least. The blood thinners and diuretics will take many more days before I notice much improvement. All of which is not as important as the threat of blood clots themselves. Suddenly, chemo itself appears like child's play, but child's play that requires a minimal level of health for which I which I am currently unqualified.

An Unwanted Journey: Day 1083 - H is for...

Take your pick:

• Hospital
• Health Care
• Happiness
• Hell
• Hard Times
• Hope

...even all the above.

The surprises continue, I'm afraid. I write this entry from the comfort of a hospital bed on the 6th floor of the Grand River Hospital in the in-patient oncology unit. My wife and son have just left for the evening, and I'm getting ready for what I hope to be a peaceful and uneventful night. When I awake it will be Remembrance Day in Canada and I'll take some time to watch Schindler's List, one of my annual video tributes. Sometime during the day, I'll be transported back down into digital imaging for yet another CT scan, this time of my abdomen.

So, "whaaaaa happened?"

I awoke early this morning, did some reading, took my medication and otherwise prepared for the CCAC nurse to remove my catheter, followed by a consultation with my medical oncologist, followed by my twice postponed 2nd chemotherapy treatment. But shortly after 8:00 am, I noticed that my left leg had swollen dramatically and that I could barely stand, much less walk anywhere. When the CCAC nurse arrived, we went ahead and removed the catheter, and I conveyed my anxiety and dismay about yet another set back. The truth is that I was very emotional, right on the edge, intensely worried and finding it hard to remain positive.

When we arrived at the Grand River Regional Cancer Centre, we met with my oncologist who immediately did a physical, ordered more blood work, another deep vein thrombosis ultrasound, and a tentative abdominal CT scan (do I need to say that the chemotherapy was postponed yet again?).

When the ultrasound came back positive for a blood clot in the left leg, I was immediately admitted to the in-patient oncology department where they began treating me with blood thinners to dissipate the blood clot in the hopes of reducing my tree-trunk-size left leg (the weigh scales also showed that I had gained about 10 lbs in a little over a week; more evidence, if it was needed, that I was retaining fluids in the lower half of my body).

On the other hand, during the day, I began voiding naturally again, thereby avoiding replacing the Foley tube. The nurse also re-dressed my PICC line using a steroid puffer to treat the inflamed area around the crook of the elbow with the whole area then covered with a clear adhesive and dated (thus making it possible again to see the insertion point and the inflammation area directly whenever we wish instead of once every three days when the CCAC nurse comes to my house to change the gauze, etc). We also applied a hydrocortisone cream to the outlying areas of the arm.

One of the cooler moments was informing the attending physician and nurse of my medical history only to have them both remark how they have never heard anyone so well informed about his/her condition. The truth is that my wife had to keep reminding me what year specific treatments were given.

So the next goal is to stay in hospital and get rid of both the blood clot and the swelling in the legs. After that, we need to get me mobile so it won't happen again. Then we can talk about resuming chemotherapy in better shape.

Am I really happy to be hospitalized again? No. But if that is what it takes to get this under control, then so be it.

An Unwanted Journey: Day 1081 - Family Values

Warning! This post contains opinions (a sure sign that I am finally beginning to feel better - at least for today).

I suppose it was inevitable. Obama is elected President of the United States, thereby unleashing a torrent of hope and optimism, as well as unrealistic expectations. But to counterbalance that, Florida, California, and Arizona voters decide to outlaw gay marriage, resulting in anguish, resignation, and inappropriate fundamentalist exultation.

Cynics might think of this odd scenario in the United States as a conciliatory tradeoff to ease the pain of the transition from a southern religious right domination of political power to a northern liberal democrat ascendancy, the offer being a conservative preservation of the traditional term "marriage" for heterosexual unions only.

I have mixed opinions about the significance of the "Proposition-8" type election results.

As an historian, I readily acknowledge that language is not static, that words like marriage and family have changed and will continue to change as cultures and societies evolve. The suggestion that "marriage" has meant the same thing for all time is lunacy. In fact, part of the pleasure of the study of history is the discovery that appearances are deceptive, that the connotations of words that are apparently universal were not so in reality, and that the context of social institutions must be examined carefully to discover what those institutions really meant.

On the other hand, I also appreciate the importance of new words which help distinguish older and newer meanings. I understand that the word "marriage" isn't as precise as it might be to identify the recognition of committed relationships among gay partners. On the other hand, "union" seems sketchy at best, not even coming close to highlighting the commitment, responsibilities and, yes, rights of same-sex partnerships.

In addition to questions about the meaning of words, we have the more important political issue of doing the right thing and providing appropriate legal recognition of "special" relationships in regards to property, estate, health benefits, and so on.

What does any of this have to do with cancer?

One of the things you will hear cancer patients talking about is "family, friends, colleagues and acquaintances". We use different words to categorize our relationship with those who provide (or don't provide) support to us in our journeys with cancer. Why we do so, at least in part, is to distinguish those in our circle of influence and affection. Traditional distinctions point to expectations and the anticipated depth of supportive relationships.

But cancer (and other life-threatening diseases) often surprise us. Who "shows up" and the support offered are often at odds with expectations.

My own experience has fostered the opinion that what matters most is not family per se, but the choices made by other people to become your family during the journey (some people have suggested the word framily to distinguish these kinds of relationships).

People who have chosen to provide me with regular, visceral, and dependable support often come from outside blood ties. My wife's two sisters, for example, have been outstanding (I guess I shouldn't be too surprised, though, since they were all raised in the same household). My life-long and long-term friends have been extraordinary companions. My colleagues, current and past, have blessed me greatly.

It's the choice, the commitment, that is important. Family values matter, but it is the choice to become and remain a family member that is significant.

An Unwanted Journey: Day 1080 - Long Day's Journey

It started last night at 10:30 with a trip to the ER. I noticed that the increasing tightness in the lower half of my body was now accompanied by swelling in both legs. Since our refrigerator sheet with "things to watch" included inexplicable swelling and shortness of breath (something I have in spades these days whenever I exert myself - even an activity as simple as visiting the washroom), I obeyed my wife and left with her for the emergency department.

Five hours later, we were on our way home again, bilateral edema having been confirmed, 60 mg of Lasix administered through the PICC line with an immediate effect of decreased swelling and a trio of emptied catheter bags within 45 minutes. There was also the inevitable drama of screaming patients, police guarding men with facial lesions garnered from fighting somebody somewhere, and ER nurses whose skill and knowledge always impress me.

The same ER doctor that had visited me a week ago came by again and talked to me about the edema. The blood work suggested my kidneys were functioning well, but that I could do with increased attention to nutrition, especially consuming more protein. I need as well to keep my legs raised as much as possible while getting some activity, such as walking, whenever I can.

Soon enough - far too soon enough - we were heading back to the cancer centre for the already postponed 2nd chemotherapy session. First, we had to do another blood draw to accompany the blood draw done earlier in the morning in ER. And, I felt we had to contact my medical oncologist to let him know what had transpired.

The blood work confirmed that my albumin was low but otherwise in decent shape for the chemotherapy. After sharing the details of my medical experiences last week with the chemo suite nurse, we paged the oncologist who came over and did a quick examination of my legs. He too was concerned about the shortness of breath and the possibility that my IVC filter might be malfunctioning thereby making a pulmonary embolism a dangerous possibility.

He scheduled immediate tests in the medical imaging department of the hospital for a spiral CT scan of the chest and an ultrasound to look for possible deep vein thrombosis. The chemotherapy treatment was postponed until early next week with the balance of the day devoted to the required tests.

By 5:00 pm, we were back in the cancer centre consulting with an oncologist who confirmed that both tests were negative. This means that I am in no immediate danger of pulmonary embolii...some good and welcome news.

I've boosted my oxycodone to two tablets this evening to quell some of the abdominal pain (I probably can decrease pain medication once the edema starts to lessen tomorrow after I start the oral version of the Lasix) and allow me to do some walking around the house. But, of course, the drama and intensity of my dreams has skyrocketed again.

With such a busy day, there wasn't really much time to reflect. But my curiosity was in full force as the new information and tests came at me one after the other. Now, I'm looking forward to a quiet weekend for resting and relaxing and as much walking around inside the house as I can manage.

Is it OK to be hoping for some routine again?

An Unwanted Journey: Day 1079 - Need to Know

We have so much medical knowledge available to us these days. Much of the information on the Internet is useless, of course, comprising testimonials for miracle cures and a pooling of the ignorance of many. But in all that chaff, there is some wheat (OK, so when did I get so Biblical in my metaphors?). And surprisingly, it doesn't really take that long to begin to understand and appreciate the technical language of researchers whose abstracts are readily found online.

I suppose the first time I appreciated the incentive to learn and accessibility of specialist medical information was watching the movie Lorenzo's Oil. But over the last three years, I've also come to understand more of what I need to know for my own specific medical condition.

People sometimes get a little impatient with me when I lapse into medical terminology in describing my own situation; but part of that is simply because as I become immersed in such information, I see the distinct advantages of precision that such language conveys to those who know the context for these terms. Over time, friends and family members are learning what I have discovered as well, thereby further facilitating some of our conversations.

But distinguishing what I need to know from what I don't need to know is not always easy. Some things which I have dismissed as purely routine, have turned around and bit me. One example is the use of products for cleaning around the PICC line insertion point, the barrier films used, the swab sticks, the wrap and gauze, and adhesives. Nobody told me that I would need to have this information readily available to answer question about skin sensitivities. But that is precisely what has happened in the past three weeks as home care and cancer centre nurses struggle to help me overcome rashes, itchiness, and concerns about inflammation.

This example only goes to prove that my "anal" approach to medical information simply didn't go far enough. I am keeping a diary of just about everything being done or happening with my body in the hope of avoiding "ignorance" in the future and expedite decisions about using appropriate products.

If I have advice for anyone dealing with such intensive medical care issues, it is this. Learn everything that you can, write it down or get your care giver to write everything down, and get copies of your medical records. Be sure to include both generic and brand-specific information.

This is only useful advice for those who can handle the information overload or have a natural interest in such matters. But even if you're not naturally inclined to learn these details, it helps to have the information available. It saves time, it prevents needless mistakes, and it keeps medical practitioners aware of the important fact that you know what you're talking about. When they realize that, most will respond with more detail and avoid the fluff and platitudes patients so often get as a kind of default communications strategy from their doctors.

What do you need to know? Hard to say precisely, but the best default answer to that question is this: "everything that might possibly be useful; everything that another medical practitioner might want to know."