An Unwanted Journey: Day 1398+1 - "Obituary"

DONALD DOUGLAS SPENCER
1953 – 2009

Don died Sunday, September 20th after living a full life for 56 years. He died at peace, with his family close by. Cancer was part of that journey, but not nearly as important as sunshine and happy days, the wonderful years of love and growth of his wife and sons, work that he accomplished with pride, friendships that lasted a lifetime, and at peace with himself and those that mattered most to him. In this wild and wondrous universe, his journey is complete, like a pebble dropped into a pond and sinking to the bottom, but with waves rippling indefinitely and extending in all directions.

Don leaves behind his beloved wife of 36 years, Marg, as well as his cherished sons, Ian and Patrick, of whom he was incredibly proud.

Remembered fondly by his father, Don of Barrie; his brothers Steve, Michael (Janice), Paul, Eric, Brian, and Jason (Jeanne), and his sister April. Don will be sadly missed by his mother-in-law Hannah Moor and sisters-in-law, Sharon (George) Dangerfield and Ruth (Norman) MacLaren, as well as many nieces and nephews

Predeceased by his mother, Margaret Jean and by his brothers Gregory and Randy.

Cremation has taken place.

The service to celebrate Don’s life will take place at the Erb & Good Family Funeral Home, 171 King Street South, Waterloo, on Saturday, October 3, 2009 at 2:30 pm. Following the service everyone is invited to the Fireside Reception Room of the Funeral Home for refreshments and a chance to share stories and meet with the family.

Many thanks to Dr. Keleher, CCAC and Paramed- especially nurse Laura U., as well as the doctors and nursing staff at Freeport Hospice.

Condolences for the family and donations to the Grand River Regional Cancer Centre may be arranged through the funeral home at http://www.erbgood.com/ or 519.745.8445.

In living memory of Don, a donation will be made to the Trees for Learning Program by the funeral home.

An Unwanted Journey Day 1398 - "Journey's End"

I have unfortunately been the bearer of bad news on this blog, filling in for my father when he was unable to. I must perform this duty one last time. Don passed away quietly this morning at Freeport hospice after a four year battle with cancer. He was able to be comfortable in his last days and did not suffer.

He did not pass away alone, but surrounded by the love and care of his family and friends. I thank those who were able to visit him in his last days.

Don's obituary will be run in the Kitchener Record within the next few days. We will be holding a memorial service for Don in the near future, and i will update the blog with his obituary and details for the service in the near future. My brother and I will be moderating comments on the blog as well as checking Don's email. Your well wishes and thoughts are appreciated.

I. Spencer

An Unwanted Journey Day 1389 - "Slip"

As is to be expected with all terminal diseases, Don's condition is deteriorating. Expected but not any easier to comprehend. But what had been a gradual slip is beginning to become a quick slide. Don is now very weak and jaundiced. He has a difficult time focusing and can only speak in whispers. He sleeps for much of the day and conversation tires him quickly. Don is no longer as cognizant of what is going on around him. This is not to say that he is suffering; The pain management at Freeport has been excellent and he is comfortable.

Visitors are still welcome but please adjust your expectations accordingly. Either myself or my brother are checking and moderating comments on the blog and have been passing on your wishes and comments to Don.

I. Spencer

An Unwanted Journey Day 1386 - "Freeport"

Today Don was admitted to Freeport Medical Centre for hospice care. We could no longer provide the care necessary for him at home. I was impressed with the facilities and staff at the Centre and feel confident he will receive the appropriate care.

It was a difficult decision for our family to have Don move to Freeport for continued palliative care. But Don realized he needed some extra help that family could not provide. It will be very different not having him in the house but in the end it is the best choice for all involved. I'm sure we will be spending a lot of time at the Centre.

Thanks to all of you who have supported him so far.

I. Spencer

An Unwanted Journey: Day 1368 - “It is what it is…”

I am having M write this blog because of my extreme fatigue and increased confusion these days.

The palliative care doctor was in today to review the results of the hospital procedures earlier this week. He had been in consultation with the general surgeon who had  tried to perform the ERCP, without success. They had reviewed the other option of a drainage bag but the risks involved outweighed any of the short term benefits. We will be trying a course of steroids for a few days. If any of the blockage is due to inflammation, it may allow for a bit of natural drainage of the bile.

There is no further treatment available and the prognosis is now a matter of days or weeks. I cannot commit to any further blogs or tweets. Family members will do what they can. 

An Unwanted Journey: Day 1360 – “They Call Me Mellow Yellow”

M. asked me this afternoon after I had spoken to the palliative care physician, “Do you feel scared?”

“No. You and I have been through all the scenarios and considered the consequences. I just wish we had a better schedule. Everything is happening just a little too quickly now.”

The CT scan of 17-Jul and the blood work from that period were, in general, unremarkable. But then, about 8 days ago, I started having jaundice symptoms. So we scheduled an ultrasound which, unfortunately didn’t give us much more information. Then, we scheduled another CT scan about three days ago for the 27-Aug.

To me, the delay in test dates meant that there was less urgency. But then, my palliative care physician called Monday of this week and had me get the blood work done earlier. The next day I had the test done and then heard back from the palliative care physician today with news that we were accelerating the CT scan. Evidently, the bilirubin and liver enzymes were all very high, demanding immediate attention.

So next Monday I will have another CT scan followed Tuesday by a procedure with a general physician called an ERCP (depending on the results of that CT scan). The hope is that we can use a combination of a an IV and the endoscopy to ensure better drainage out of the liver thereby eliminating the jaundice and giving the kidneys a better chance at eliminating the bilirubin.

Obviously, I’m not a specialist and much of what is being proposed is mysterious. All I know is that I am extremely tired all the time, that my skin is turning yellow at an alarming rate, and that I and my family are very concerned at the turn of events. We all know that the progress of metastatic colorectal disease will eventually lead to loss of liver function and death.

Because we really don’t know how the timetable will sort itself out, I will contact those who have recently tried to arrange visits.

An Unwanted Journey: Day 1333 – More Information, More Choices

About a week ago, my wife took me to the Medical Imaging Department of the Grand River Hospital for a CT scan of the chest, pelvis and abdomen. Monday, my palliative care physician visited my wife and me to review the results of both the scan and some blood work done a couple of weeks earlier. Since Monday, I’ve been updating friends and family about the test results, hoping that in doing so, a fresh perspective will emerge, simply from the telling. But it’s not that simple.

In my experience, I often find an appropriate perspective simply in relating medical test results to those who care for me yet may not be well informed about what they mean. For them, whether the test results are good or bad or somewhere in between depends on the spin that I provide, on the tone of my voice, on my facial expressions, and, if my wife is present at the time, on the congruence evident between us.

For some reason, this week has been particularly difficult in providing a framework for the test results to friends and family. As you might expect, people want to know whether the results are good, bad, or indifferent. But I can’t really summarize for them until I’ve determined their meaning for me. And that is still a work in progress.

What I can say is that since the CT scans of September and November of 2008, there is evidence of substantial growth of the lesions on the liver. Two of the lesions have joined together. I am also now getting measurements in both length and width, whereas before it was just length.

The lesion on the left hepatic lobe is now 9.6 x 4 cm. On the right side (the side in which the lesion is very close to the biliary duct) the measurement is 4.2 x 2.7. I guess all I want to say right now is that the measurements indicate substantial growth, but not faster than what I would have anticipated. No other lesions are evident, either on the liver or the abdominal wall. That is good news.

The scan also indicated that the IVC filter has caught material from a clot which presumably has come from the leg. That filter is now 2/3 full, meaning blood flow is now limited to 1/3 of the device, although there is probably additional, supplemental blood flow through the growth of other veins. We will have to consult with other experts about what this means. For example, can we replace the IVC filter, or add another filter above or below the existing filter? The goods news is that without the filter, I would almost certainly have suffered other pulmonary embolii which could easily have resulted in death.

Finally, there is no evidence in the CT scan of regional recurrence of cancer at the original site in the rectum.

Blood test results are not remarkable.

So, this leaves us with some homework to do. I might consider chemo again, especially if there is reason to suspect that I would then be eligible for a trial with Erbitux. But that will mean consultation with a haematologist at the very least. It will also mean reconsidering staying under palliative care.

Because there are so many variables and options to consider, I am having a difficult time determining next steps. Given my negative experience with chemotherapy, I’m tempted to simply stay the course under palliative care, to consider the time available to me as a kind of short-lived retirement, albeit with a lot of pain management and restrictions on my mobility.

Currently, if it weren’t for the pain, life under palliative care would be acceptable. Even with the pain, it’s not a terrible way to approach one’s own death. Chemotherapy might simply add more disruption and pain without extending my life expectancy significantly.

What to do? What to do? My immediate family members are leaning towards continuing what we are already doing under palliative care. The idea is simply to get as much quality of life as possible for as long as possible. With them, I think its hard enough seeing me suffer pain with existing palliative/home hospice care. But add to that what I suffered previously and quality of life disappears very quickly.

In any case, thinking about my available choices will consume much of my time and energy over the next week or so.

An Unwanted Journey: Day 1327 – On the road again

I gave my bicycle away today. It would have been unthinkable a few years ago, unless I was feeling very generous and wanted to justify the purchase of another model during this year’s Tour de France. But today, it just made good sense…and, after all, it was a gift to my son.

Bicycling has been a significant part of my life since those days when I delivered newspapers in Barrie, Ontario – The Globe & Mail in the mornings and the Toronto Telegram in the late afternoons. As an adult I continued to ride recreationally, enjoying the solitary nature of both trail and road cycling, not to mention the toys and gadgets one could purchase. Probably my favourite add-on in recent years was my gel seat, something which helped fight the dead-tushie syndrome from riding for two or three hours on the back country roads of Waterloo Region.

Friends often warned me that my hobby could lead to prostate disease, so I made sure to get an annual rectal exam from my family physician. I’ve never had prostate cancer, but after diagnosis of colorectal cancer in November 2005, the occasional thought has crossed my mind about a correlation with that disease and the frequency with which I rode my bicycle over the years.

I don’t believe there is any correlation. In fact, in my unwanted journey with the disease, the one physical activity I thought I might take up again would be bicycle riding. But it never happened, not only because my buttocks have been the source of virtually unending discomfort and pain, but because my wife has vetoed any initiative to try it out again.

Still, the bicycle, the gadgets, the expensive bicycle stand – they’ve all remained in our garage awaiting “better days”. But now that I’m in palliative home care and my son needs inexpensive transportation, I’ve given the bicycle to him.

He seems quite keen on getting started. Today, he and my wife took the bicycle in for a recommended cleaning and tune up. He’ll be buying a helmet and gloves right away too. And then, if he’s anything like me (and he is) the gadgets will start beckoning.  In addition, he’ll be finding the best routes to take to the university in the fall, the best trails to explore, and roads which lead to simple physical bliss.

And what about me? My unwanted journey will continue without the bicycle. Next week, I’ll get the results of my CT scan and blood tests. I’ll proceed with Isaac Asimov’s Robot series after having just finished the Foundation series. I’ll receive more visitors in my home and in the backyard. I’ll get my wife to take me for car rides and maybe even a trip to a mall with the portable wheel chair. In other words, I’ll enjoy my forms of transportation – real and imagined – and watch my son’s enthusiasm for bicycling grow.

An Unwanted Journey: Day 1318 - Looking too good to be terminally ill

Some who read this blog do so because they’ve been diagnosed with colorectal cancer. In fact, at least some health care providers in the Waterloo Region habitually encourage newly diagnosed patients to read this blog. They do so both for its sometimes brutal realism, as well as for its optimism and useful  references.

I’d love sometime to get together with other patients to talk about an experience that some of us might share. That experience relates to people commenting on how well you look.

“Gee, you look really good, Don. If you hadn’t told me that you have terminal cancer, I wouldn’t know that there was anything wrong with you at all…OK, maybe that cane that you carry with you might be a clue. And you’ve lost weight. Come to think of it, you’re also looking pretty pale these days. And there are those grimaces that momentarily capture your face, and moans we occasionally hear from the main floor bathroom.”

My wife will then offer up her perspective.

“You know, as soon as you leave today, Don will probably have an extended nap to recoup energy. And if you were here in the evenings and night, you would see those times when the pain level is far higher than it is at this moment. You’d also see how difficult it’s been for Don and his medical team to balance the pain medications to make his life bearable and to avoid delusions. In fact, almost nobody thought Don would make it beyond Christmas last year. From my perspective, it’s almost miraculous that he’s still here entertaining visitors.”

The common wisdom is sometimes stated as follows:

“If you feel good, then you are good.”

“If you look good, then you are good.”

My response tends to vacillate between some variant of common wisdom and a more scientific perspective. Science, for instance, offers us ways to extend our senses, to take measurements and devise statistics that are more finely tuned than the rather crude “feeling good” and “looking good”.

Common wisdom is where I go when I’m overwhelmed with all the statistics. When I can understand the measurements and statistics, then I put common wisdom back in the tool bag for another time.

What does it matter?

With most people, it really doesn’t matter how well you feel or how good you look. But with people who really care for you or whose care giving requires specialized knowledge and measurements, then it can be frustrating communicating with them when you sense that they don’t have the complete picture.

On an emotional level, if a family member tends to discount your concerns because you simply look good at the time they are with you, then you have to deal with the frustration and determine whether or not to risk telling them that they just don’t get it. With concerns you might have with health care providers, it’s much easier; you simply insist that they get the big picture one way or the other before they start a procedure or ask you to follow a new routine.

What to do?

I’d like to hear from some of you about how you’ve resolved the emotional frustration of dealing with people who you sense don’t understand the seriousness of your medical condition. Sometimes, perhaps, it’s the other direction. You mention cancer and they have you already in the grave. But most of the time, the frustration is in sensing that the other person doesn’t get how sick you really are.

Having said all that about emotional frustrations and difficulties in communicating, I have to admit that my overall journey has been remarkably positive. I’ve seen people open up and share difficult topics with me – difficult for both of us. I’ve seen people struggle with how much or how little to say, with the overall result being an extension of healing in both directions. I’ve sometimes had to switch roles from patient to psychological counsellor, again with generally very positive consequences. Like so many other important relationships, my unwanted journey has revealed opportunities for growth and enrichment.

An Unwanted Journey: Day 1310 – Kudos to our team

I am really impressed with the palliative care / home hospice services offered through the Grand River Regional Cancer Centre.

Sure, the bad news is that cancer is going to eventually get me – maybe directly, maybe by something like a heart attack, a pulmonary embolism, or liver failure. But everyone has to make an exit at some time. Not everyone gets to prepare so completely for their death. Nor does everyone get exposed to the full range of services offered through the provincial/regional cancer care organizations.

I hear, from very good sources, that the Waterloo regional cancer care, especially the palliative care services, are among the best anywhere in the province. In addition to such testimonials is my own experience. Here’s is a recent one that demonstrates how it works here in the region.

Last Thursday, we were visited by the coordinator for Paramed (the specific organization providing in-home nursing services) and the nurse practitioner working with the doctors providing overall medical care for hospice/palliative patients. During that meeting, as they heard me talking about my personal need for more information about the progress of the disease, they decided to ask for a CT scan. Those CT scan images should tell us how quickly the liver lesions are growing. They might also show if there is any significant fluid build up in the abdominal cavity.

Evidently most patients are content with knowing the bare minimum about the progression of their disease. I’m not satisfied with simply receiving symptom relief. My visitors that day recognized that emotional need and adapted the care I was receiving to accommodate my need for information.

Then Friday I came down with what appeared to be stomach flu symptoms. By Friday night I was feeling nauseous and actually vomited for the first time since beginning to receive cancer care, including radiation and chemotherapy. Saturday and Sunday, my appetite disappeared completely. By Sunday night, even though my body temperature was normal, I became increasingly anxious. I was short of breath, had heart burn, had hot/cold feelings switching in a matter of a few moments; then I started to sweat, followed by even more anxiety.

We decided to call Paramed to get some nursing consultation since I wasn’t scheduled for another in-home visit until the next Tuesday. We got a call back within about 15 minutes with my wife explaining my situation to a nurse who knows my situation and care very well. She explained all the possible causes, including a mild heart attack, acid reflux, progression of the disease which might be pushing organs up through the diaphragm, or an anxiety attack. She also went on to talk about what to expect should I go to the hospital worried about the possibility of a mild heart attack, talking about the DNR I have already signed (Do Not Resuscitate). Upon her advice I took some more pain medication and some additional anxiety medication and tried my best to get some sleep.

Sunday night was very tough, especially as I considered the prospect of my death being far more imminent that I had anticipated.

Monday morning, a Paramed nurse (the same nurse we had consulted the night before) came and took my vitals, reassuring me that my blood pressure and heart rate were all normal, making the heart attack possibility unlikely.

Later in the day, the palliative care doctor caring for me came for a visit to discuss everything that had happened over the past week or so. He also gave me a thorough physical exam. He confirmed that a CT scan would be scheduled along with complete blood work. He suspected, given the many variables, that I had suffered through a viral infection.

Sure enough, after that visit, the heart burn started to recede, my appetite started to reappear, bowel movements began again, and I found myself sitting outside with my family in the cool of the evening while they ate supper and I nibbled on some crackers.

Clearly, anxiety is an insidious thing, making difficult circumstances worse than they truly are. But my care givers, including my wife, responded quickly and appropriately allowing me to recover my bearings and achieve some balance.

Whatever the news I’ll get from the blood profile and the CT scan (scheduled for Thursday, July 9th), my health care team deserves high praise.

An Unwanted Journey: Day 1306 – Uncertainty and Humility

My wife went to a retirement party recently. Before leaving, she asked me, “What do I say when people ask me how you’re doing? Just the standard, ‘We’re taking it a day at a time. One day he’s doing reasonably well, the next he’s bedridden and in a lot of pain and sleeping whenever possible.’”?

She returned from the party pleased with seeing old friends and colleagues. Evidently, a lot of people asked about me and about how she was handling the daily care-giving responsibilities. This blog is a handy resource for answers to questions about how I’m dealing with cancer, but there isn’t anything here illuminating the care giver’s experience. About all I can offer is a platitude that it takes a strong and confident partnership to make cancer care work and a marriage healthy.

These are uncertain days. As I’ve said before, being on palliative home care means that there are no regular CT scans or MRIs or even complete blood work profiles, CEA measures and so on. There are regular visits from the palliative care doctor from the Grand River Regional Cancer Centre every two weeks or so, and even more frequent visits from nurses. But apart from symptoms like pain, appetite, bowel movement frequency and characteristics, voiding profiles, fatigue and drowsiness, nausea, loss of breath, etc (all part of the standard Edmonton Symptom Assessment System – ESAS), I really have little objective information about how the disease is progressing.

It actually takes a lot of humility to accept the status quo. If you, like me, prefer more information, then hospice care can be frustrating. At its most basic, home hospice care is about keeping the patient as comfortable as possible until he/she dies. The professional care givers can’t answer questions about how the disease is progressing apart from the fairly obvious.

I’ve asked for special treatment because I thrive on knowing as much as possible about the progress of the disease. I’ve asked for a CT scan to tell us whether the liver lesions are growing, how fast they are growing, and whether those other lesions in the abdominal cavity are getting large enough to be seen on the scan images.

Visitors, whether nursing staff or simply family and friends, continue to tell me that I’m looking good, surprisingly so. As it is, I’ve survived far longer than even the palliative care doctor would have expected when he first started visiting me in November 2008. My wife and I continue making a good team. We’re really good at this!

So whatever the CT scans have to tell me, I’m happier today realizing that I’m going to have some objective markers soon to answer the continuing question, “How are you doing?”

An Unwanted Journey: Day 1286 – Sci-Fi Dreaming

May 2009 has been a month of pain and milestones.

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

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

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

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

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

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

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

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

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

An Unwanted Journey: Day 1259 – Frightened and Fascinated

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

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

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

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

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

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

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

An Unwanted Journey: Day 1252 – Sabotage!

A prognosis of a terminal illness is sabotaged continuously. How? Well, when you take the opiate-based pain medications, you want them to work their magic. You want to be pain free. But the price you pay for being pain free is that you are participating in a disappearing act. 

“Maybe the prognosis was wrong. After all, I feel pretty good right now. If all it takes is a little fentanyl patch on my shoulder and an occasional pill, then perhaps all this talk about dying is exaggerated.”

Then, sometimes, a couple hours later, as you moan in frustration at the rapidly increasing pain in your buttocks, you get up and reach for another dilaudid.

“This really sucks! This morning I felt great. Now I feel shitty. I guess I was stupid to wonder about the accuracy of my prognosis after all.”

That’s the most common form it takes for me.

But, the conspiracy can take even more subversive forms and involve other people.

“You know how they talk about a person with cancer wasting away until they are nothing but skin and bones? Well, that’s not happening to Dad. He still has an appetite; he still gets dressed and looks good after cleaning up and shaving. He still tells jokes and is as sarcastic as anyone else in the family. Dad looks good for an old guy and is writing. It’s almost like he doesn’t even have a disease, much less something serious like cancer.”

True, the voice of a son trying to make sense of it all will naturally gravitate towards optimism, towards a wish that he desperately wants to become a reality. But when he expresses those thoughts, he is unintentionally aiding and abetting the conspiracy - “the prognosis must be inaccurate after all.”

When summarizing my condition over a few weeks or even a couple months, the pattern seems to be that there are simply good days and bad days; more specifically, days when part of the day is good and part is bad. Again, over that longer period of time, it seems that those days that I can categorize as having a “mixed” pattern are becoming more frequent.

Because of the “pattern”, I find myself entertaining visitors less frequently, often having to postpone or cancel a visit because I have become too ill or fatigued or simply unable to deal with the pain I’m experiencing to “pull it off”. I don’t trust myself as much either. That quick trip in the passenger seat to pick up a coffee at Chapters becomes a major undertaking, a calculated guess about the time required and how close I will be at any specific time to a washroom. Additionally, sometimes I will find myself with my cane walking down the driveway with a plan to walk around the block, but only having enough energy to make it a few houses down the street.

Whatever is happening, it’s becoming less predictable. Being the controlling type personality that I am, I regret and resent it. Sometimes this means that the smile on my face may be a little forced at times. The pain, unfortunately, when it makes itself known in my facial expressions…well, there’s nothing forced about that.

An Unwanted Journey: Day 1249 – My Brother’s Video Tribute

Created by Michael Spencer: Google video tribute to Margaret Jean Spencer

An Unwanted Journey: Day 1249 – My Own Tribute to Mom

Being grateful that I was merely able to be at the memorial on Saturday past, my own contribution was relatively short.

*****

Mom was the single most significant influence in my life. She chose to give me life, even when many would have counselled a young, unwed pregnant teenager to do otherwise. That choice meant she would forego post-secondary education and a career for herself, instead raising a large family on a single household income.

Throughout my life, she consistently sacrificed her own future for that of her children. She offered advice when asked, and even when not asked. But whatever the issue, whether we chose wisely or not, she honoured and respected her children, never once suggesting that her sacrifices entitled her to veto our decisions. To this day, I am still amazed that she and Dad didn’t suggest that I wait a few more years to get married [M and I married when we were 20 and 19 respectively].

She saw some of us make mistakes. And she made her own mistakes. But love, family, respect, trust, faith and honour were always part of her unspoken and unwritten creed. She taught us to be honest with one another, to fight fairly, to admit our mistakes, and to struggle for what we believed was true and good and beautiful.

Mom and I disagreed on many issues, some of which were fundamental and some inconsequential. But whatever our disagreements, we both loved life and honoured the mother-son relationship. This meant that, as a mother, she suffered great sorrow when I was given a prognosis of a few weeks or months with terminal metastatic cancer. It meant that even during our last visit together in Kitchener, we argued with each other, and then hugged and cried and wished that life’s absurdities might be otherwise, never once suspecting she would pass away so unexpectedly.

Now it is I who suffer a deep sorrow. But it is a sorrow tempered with the knowledge that there was nothing left unsaid, nothing false in our relationships. My hope is that when my time comes to say farewell, I will follow her example of death with dignity and a life lived with no regrets.

An Unwanted Journey: Day 1249 – My Cousin’s Tribute to Mom

As I gradually find my way back into the land of the living and make sorrow upon my mother’s death less of a constant moment-by-moment companion, I am including here a tribute from my Cousin Anita.

*****

When I was young, it was really quite simple. We lived on Strabane Ave. It was half a block to Rodney where we could hang a right. Following along Rodney, eventually we would pass our rival, Codrington Public School and, shortly after, Rodney would end on Highland Avenue which veered to the left. From there, Aunt Marg and Uncle Don lived only a few houses away. For as long as I could remember that was the way it had always been. Naively as a child, I also thought that was the way it would always be.

Aunt Marg and Uncle Don lived in what seemed to me a tiny but magical house. In the center of the home, on top of the piano was a black and white photo of five children seated like a staircase in age: Donny, Randy, Steve, Michael, and Paul. I still picture that photo in my mind whenever I need to list off my Spencer cousins. The photo gets me halfway there! Being one of only two children, I loved the commotion created by that full house of cousins. For a good number of years it seemed that there was always a baby around and another on the way. That, to me, was part of the magic.

But there was also something about my Aunt Marg, herself, that truly made visiting her a special treat. As I recall, upon occasion, she would sit down at the piano and her hands would ease their way along the keyboard in a motion of grace that few possess and what I have since come to identify as the sign of possessing a true musician’s heart. Aunt Marg always moved her hands that way with or without the keyboard and that unique movement of grace that she so abundantly possessed, enchanted my soul.

In apparent sibling adoration, my mom informed me at a very young age that Aunt Marg had beautiful auburn hair. I had never heard of that color before, but soon learned it was a shade to be coveted. At that time, Marg’s hair was thick and long. She would braid and wind it several times around her head. She also had a rich voice and a warm laugh. All of these qualities made being with my aunt something special for me.

Over the years, my mom, Catherine Pearsall, has shared with me what it meant to be the middle sister of three girls and specifically what it meant to have Marg as her older sister. What is evident to me each time my mom shares about this is that Margaret led the way. She patiently taught and brought along her younger sisters. She communicated how things were to be done. She led her sisters through the tangled web that defines the journey from childhood to womanhood and she did so with love, warmth, patience and a steadfast faith in her Lord and Saviour, Jesus the Christ. Those qualities have characterized the entirety of Marg’s life.

In her last few days, I feel she granted us all a similar gift. When she no longer could speak she continued to smile and squeeze the hand she held. She let us know without doubt that it was well with her soul. In a way uniquely Margaret she pointed us through the tangled web that defines our journey from life through death – a way marked by love, warmth, patience and steadfast faith.

An Unwanted Journey: Day 1240 – Death Seems to be Stalking

I guess it’s inevitable that an unexpected and untimely death, especially of one of your parents, would lead to elevated personal anxiety levels. That death (as anxiety) is stalking me seems obvious for several reasons.

First and foremost, my coping skills aren’t working.

Take trying to be normal for example. I’m getting out of bed, walking around, sometimes getting dressed if only because the doctor or a nurse will be visiting that day. From an outsider’s viewpoint, there would be little rhyme or reason to my meandering through the rooms of my house. In fact, an observer might be justified in worrying about the state of my mental health.

And then there’s exercise recommendations. I’m trying to relax instead of simply relaxing. I’m trying to breathe deeply and calmly, consciously and without apparent effect. Neither one is working.

And then there is grieving with others who shared the same household with my mother. I invited my father and my brother to visit and, in doing so, felt good about our time together; but then a few hours later the anxiety reappeared and I had to pop a lorazepam just to gain some distance from anxiety. So I guess grieving too didn’t work.

What about writing and research? After all, they’ve always been productive exercises in the past.

During the visit, I was asked to create a written tribute for my mother for the memorial service next Saturday. After doing so, I reviewed what I had written. It felt right. The tone was what I wanted. I was honest and successful in isolating the positive, life-celebrating aspect of our relationship. But a few hours later, it’s as if I hadn’t written anything at all.

Prior to the visit, I searched out and started re-reading Nathaniel Branden’s Six Pillars of Self-Esteem, certain that I would re-discover tools to keep anxiety under lock and key. Instead, I was unable to recreate enthusiasm, finding instead a self-conscious and academic tome instead of a repertoire of life skills.

How about evasion? Maybe a movie or an engaging TV series or episode? Oasis HD is exactly that; namely, an oasis from standard TV fare on the world’s only HD nature channel. We definitely are happy to be subscribers to Oasis HD. One example is the compelling and awe-inspiring Hubble’s Canvas.  Here, at least, the evasion offered is cosmic in scope, with a clear implication that life, however long or short, is blest when we become conscious of the enormity of our universe and the intricate dance of particles, heat, and distance even before the evolution of life.

Evasion is transformed into gratitude and awe, a gratitude that we are privileged to witness in movement of the stars and an awe that overwhelms death and dissolution merely by illustrating the conditions under which life evolves and itself (in the form of humanity) becomes conscious of both life and death.

It could, of course, be simply that the drugs are finally taking effect, timed to coordinate with my viewing pleasure. It could be that the time of day has paired up with the beauty of HD TV to throw a window open to the soul once more, making death and anxiety bit players on a much larger stage.

Whatever it is, I like it.

An Unwanted Journey: Day 1234 – Mom

It’s one thing to prepare for your own death, to contemplate your own life and dying, to consider how your own passing might affect family, friends, colleagues, and acquaintances. It’s quite another to be brought up short by the unanticipated and untimely death of a parent.

Mom died less than 48 hours ago. She died at Royal Victoria Hospital in Barrie, Ontario quietly, surrounded by members of her family, apparently without pain and at peace. Earlier in the day, even though she was physically unable to give voice to her farewells to those gathered at her side, she was able to respond to them with squeezed hands, tears and smiles. In fact, among those of us unable to be there in Barrie, she could listen on Dad’s cell phone held to her ear. We said our goodbyes in turn and she would respond by squeezing my sister’s hand. Monday morning, that was how I said a final farewell to my mother.

As I’ve written before, on numerous visits to our home in Kitchener, Mom and I said goodbye with hugs, kisses, and spoken wishes…but all in the assumption that it would be me who passed first.

Yesterday and today, I’ve been sleep walking through a dreary world, voicing my sorrow to my sons and my wife and weeping when overwhelmed. I’ve spoken on the phone to Dad and some of my siblings either by phone or by MSN Messenger, dearly wishing I could be with them, if only for a few moments, to talk about our memories. Instead, we will have to deal with the constraints of distance and my own health concerns.

Yet again, cancer has stolen something from me – the opportunity to be with those most immediately sharing the same experience, those who dwelt in the same household with me and Mom over the years. That isn’t to say that our experiences are identical. There is the birth order phenomenon, different schools, different religious affiliations and different personalities, not to mention that among the 10 siblings, only 1 was a girl.

Nonetheless, of anyone in this world it is those of us who shared a household with her and Dad, or my aunts who shared another family household with Mom, who knew her best as a family member. Friends will know her in other ways, of course, but family is special. When we are physically present in the same room, when we glance at one another, thousands of memories come flooding back. The atmosphere is charged with those memories. If those memories were threads in a spider’s web, the strings would fill the room instantaneously.

Cancer cannot steal those memories shared with other family members from me, nor can the disease steal away those memories which Mom and I alone shared. But my cancer and her untimely death have stolen opportunities for new memories. And I resent that very much. I am bitter about that loss.

Still, in my more sanguine moments, I realize that we now have a chance to build and recreate the narratives of my Mother’s life, narratives which will help us face the future with renewed vigour and strength. My youngest brother, for instance, will be able to tell L, his daughter, all about Grandma, how she loved her family and cared for us all, how she embraced her faith and encouraged each of us to find the source of all truth, of all goodness within. He will take her example and create a foundation for not only L, but for each of his children. As will my sister with her daughter. And, if we are wise, those of us slightly older and with children slightly older will still build stories of the woman who gave everything for her children.

When we gather, there may still be moments that seem abnormally still, gaps that Mom would have filled with thoughts about distant family members, about politicians run wild, about anything that occurred to her. I’m sure there will be some smiles shared then among us, recognizing her in her absence, and then each of us jumping into the gap as if accepting her implicit challenge. If we are wise, we will use those opportunities to build narratives not only about her but about all she would want us to be.

An Unwanted Journey: Day 1231 – The Natural Order of Things

My mother and father have visited me quite a bit since I was discharged in late November from hospital to home hospice/palliative care. They’ve seen my ups and downs, moments when I can hardly keep my eyes open from the fatigue or times when the pain is overwhelming, and other times when I greet them at the door, proud that I have the energy to do so.

At the end of some of those visits, Mom has often slipped me some money instructing me only to buy some telephone cards. That way, she and Dad wouldn’t worry about waking me when I should otherwise be resting. I could call them instead using the phone card. While visits are always better, the truth is that the 2-hour drive between their home and my home has been difficult during this long and cold winter. Phone cards and regular conversations minimize the distance and worries about car travel for them (I really can’t make the trip, no matter how much I would like to do so).

On a recent visit, when I was feeling especially weak and in pain, Mom whispered in my ear, as she hugged me and said good-bye, how her deepest wish was that I would recover, that God would provide a miracle, a miracle in which we would follow the natural order of things; namely, that she the parent would pre-decease me the child. In effect, she was wishing for her own death and for my life.

I get it. I’m a parent too. Like her, I would never want one of my children to die before me.

To her, I’ll always be her Donny, the first-born and eldest child. Mom has experienced the out-of-order death of a child twice before. I think anticipating a third death weighed heavy on her heart.

But life and luck sometimes continue to trip us up and kick us when we’re down.

A couple days ago, Mom fell while leaving their house to go for a ride in the car. She broke her hip, a clean break and one that would normally be amenable to a plate-and-pin mending procedure.

Things were looking good. Then today we discover that she will not be getting that surgery after all. For a variety of reasons, she will not be recovering from her fall. Instead, it appears almost certain that she will predecease me after all. Her medical team will do all they can to keep her pain free, but there isn’t much more they can do for her. She is dying.

But she is responsive. She is loved and she knows it. That is something we share with one another. Although circumstances should be different for both of us, there are two certainties, the physical certainty of death and the emotional certainty of our love for one another. Whatever the timing and however nasty and unfair it might seem, love takes away much of the sting of death’s tragic inevitability.

An Unwanted Journey: Day 1228 – Neuropathic Pain and Terror

This week has been about pain, nightmares, and adjustments. Outside, the weather has switched from the bitterly cold to warm, from windy to calm, from sunny days to rain, from people walking their dogs just to get outside and enjoy the spring to the same people huddled around their television set watching American Idol or the series final of ER.

On the inside, there have been some parallels. My blood clots have aggravated some other nerves in the right leg resulting in some very difficult evenings dealing with the pain. But my pain and system management team has come to the rescue with changes to my pain medication regimen.

To summarize those changes, I’ve gone from 100 mcg/hr to 125 mcg/hr for the 72-hour fentanyl patches, from 6 mg to 8 mg dilaudid doses (after removing the pain pump at my request simply to avoid the inconvenience of carrying a pouch at my hip 24/7), maintaining the gabapentin doses of 300 mg twice a day, and adding 10 mg buscopan pills twice a day to reduce bowel spasms. Now, late Thursday afternoon, I feel like we’re making some good progress again.

But apart from dealing with pain and changes in pain management, there have been the night terrors. Not quite the same as nightmares, the terror I’ve experienced doesn’t involve any dream content. I merely jump awake, usually yelling something indicating complete and utter terror, clutching the sides of my bed and desperately calling for help.

The new or increased pain medication is probably the cause. During this week, I’ve gradually become accustomed to both the terrors and the drugs so that last night, I didn’t even have an episode. But even if I did, the realization alone that there is a causal relationship between the drugs and the terror is sufficient to mitigate the fear and restore a sense of balance.

Never a dull moment – outside or inside! But at least these days, as we enter into April showers followed by those wonderful May flowers, there is much to anticipate. Although I am receiving fewer visits these days by choice (terror and pain will do that to you), I anticipate spending time with family and friends again fairly soon. One thing I am eagerly anticipating is seeing my sister-in-law and brother-in-law freshly back from their world travels where you can board a plane one day in Japan and arrive at your destination in Canada 60 minutes earlier the same day!

An Unwanted Journey: Day 1221 – Pain, Plans, Purpose

M has been after me for a while now to be explicit in my blog about the level of pain I am experiencing. From her perspective, I have a tendency to present an overly optimistic or rosy view of my current health status.

She’s probably right. So I implemented the Twitter gadget which grabs the five most recent tweets I’ve issued. I did so partially with a view to correcting the lag between palliative care events and publishing a blog entry.

The gadget has limitations insofar as it includes all tweets, not just those that one might categorize as health related. I can add tags to individual tweets, but there is nothing in the blogging gadget which allows me to filter by tags. Inevitably, then, the “last five” tweets will include some that are personal, technological or political in nature.

But even if I issue several tweets a day, I still have a tendency to censor myself about the level of pain I’m experiencing.

Today’s blog’s purpose is to state unequivocally that the honeymoon I experienced when my pain medication was balanced is now over. I’ve been sick. I’ve experienced new visceral and possibly neuropathic pain in the buttocks and right leg. I’m increasing the frequency of administration of pain killers at the same time that I had the pain pump removed for greater mobility and convenience. I’ve gone through more foggy moments in conversation, whether in person or on the phone. My one son describes it this way, “Dad’s looping again.”

It is highly likely that some new medication or dosage change will restore balance and allow me to consider going outdoors again. But my current situation has reinforced how much pain I am actually experiencing and just how much I need these medications – fentanyl, hydromorphone, gabapentin and soon, probably, buscopan.

Until we achieve that balance, planning will be done daily and will be limited to activities related to end-of-life issues. Any other time available will be my time. Reading, writing, watching TV series on DVD, visiting when I’m healthy enough to entertain visitors.

Then there are the daily things which one can plan partially, but can only be done when the right moment presents itself - talking about the purpose of life, of vocation, of life-long learning, of the pursuit of happiness and the creation of joy in the lives of others – you know, the big stuff.

So, that’s what’s happening.

An Unwanted Journey: Day 1216 – Making Madness Well

Deciding upon milestones isn’t all that difficult. Birthdays, anniversaries, seasonal changes, popular culture events – these are the obvious. This week, for instance, I can say I’ve survived to see Spring 2009 and March Madness 2009.

The robins were here right on schedule, waking me up with their chirping by the 18th of the month at about 4:00 am. Since then, the goldfinches, robins, cardinals, wrens, etc. have all been entertaining me in the backyard, following their own daily schedule of appearances. I can do without the squirrels and raccoons, especially when the latter get into our garbage cans and spread their discoveries over the back yard.

This spring, on the day the robins arrived, I got M to push me in the wheelchair around the block in order to celebrate the retreat of snow and ice. One final celebration of spring was getting the crack in the foundation of our basement repaired professionally. Next week, there should finally be enough rain to test the work.

This week has included another major milestone – March Madness. After some cajoling, I agreed to set up an NCAA March Madness pool, as long as I didn’t have to find and decide upon prizes for winners. In most cases, just playing in the pool is reward enough. Right now, one of my good friends and the supplier of my books of sports journalism – D, you know who you are – has been leading the way, wracking up the points. Just you wait, my friend!

I’ve enjoyed reading John Feinstein’s books about the NCAA – The Last Amateurs: Playing for Glory and Honour in Division I College Basketball, and Last Dance: Behind the Scenes at the Final Four. At first, it’s tough keeping up with the huge cast of characters, but after a while you begin to recognize the famous players, coaches, conferences and games, all of which enrich the entertainment value of March Madness itself.

Of course, having friends, colleagues and neighbours over to watch games with me has also made a big difference. But, truth be told, watching games with friends tends to mean we chat about everything, only occasionally glimpsing the score or a fantastic dunk on the HD TV.

These two milestones - spring and basketball – have meant that I’ve done better than might have been expected in keeping the cancer monster at bay. Reading about the behind-the-scenes nonsense and honour of college basketball has reminded me about how easy it is sometimes to let integrity slip when there is money to be made. But the game itself is truly one of the best things about living in North America, watching so many fantastic athletes.

Ideally, I’d prefer that these college athletes were what the NCAA claims - student-athletes. But when you watch them interviewed on CBS, most of them can’t put a sentence together. Clearly, most power conferences in the NCAA don’t put a premium on graduating students from their athletic programmes.

When my friends and I watch these games, we will usually talk a little about the hypocrisy involved in college sports, but we’ll also be jumping up and down watching the spectacular performances of athletes who have yet to sign multi-million dollar contracts in the NBA.

Even the commercials and short documentaries can be inspiring. There was one on The Score today about great plays by NCAA basketball stars that was particularly inspiring.

In all cases - probably because we’re open to such messages from the universe – there was this sense for M and me that we’re part of a stream of life that goes on each year. There are ups and downs, births and deaths, growth and decline. We are part of it all, sometimes merely as observers and commentators, sometimes as active contributors. As Julian of Norwich said in 14th-century England: “All shall be well, and all shall be well, and all manner of things shall be well.”

An Unwanted Journey: Day 1209 – Laugh, Think, Cry

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.”

- Jim Valvano, NCAA coach

What time of year is it? For me, it’s not spring, it’s not cracks in the foundation repair time, it’s not reading week, it’s not Lent. It’s March Madness! Don’t let anyone tell you otherwise.

Yes, I’m spending a lot of my TV viewing time already watching NCAA conference tournament games to get a sense of who the candidate men’s college basketball teams are leading up to Selection Sunday – tomorrow – the time when 65 teams are chosen to participate in the madness that begins next week and continues until the early part of April.

Last year, I ran the company pool and won with my second bracket choice of Kansas. This year, since I’m on long-term disability and spending most of my time in my medical bed receiving home hospice care, I am not involved in the corporate pool (is anyone running it this year?).

This year, although I miss my work a lot and I would like to have been part of a corporate pool enjoying a little corporate camaraderie, I am doing what I can to tell cancer to go to hell. Actually, I’m finding lots of ways to transform my unwanted journey with metastatic colorectal cancer into the mountain-top experience of my overall life journey.

Everywhere I turn, whether it’s my TV viewing, my reading, my correspondence, or my rather constrained social life, I am learning and appreciating exactly what coach Valvano discovered in his own journey with metastatic bone cancer. Laughing, thinking and crying make for a very good day.

As Charlie Crews says in What They Saw, an episode from Season One in the entertaining and sometimes enlightening TV Series Life, “Every day above ground is a good one.” But, not just because we’re alive. It’s a good day because we’ve taken the extra steps to laugh, to think, and to feel until tears prove we’ve actually touched the heart of our humanity.

An Unwanted Journey: Day 1208 – More Dramatic Lessons

Coincidentally this week, my TV viewing has included shows dealing with cancer and dying. Tonight it was Grey’s Anatomy. Last night it was House.

The latter almost always demonstrates moral shortcomings in a big way. In this week’s repeat episode Sleeping Dogs Lie, a woman (Hannah) suffers acute liver failure which requires a transplant before a complete diagnosis by House and his team is possible.

The woman’s lesbian lover (Max) offers part of her liver in what appears to be a sacrificial and loving gesture. The moral quandary arises when House discovers that the woman suffering liver failure had been planning on ending her relationship with the other woman for some time. Should Hannah tell Max before accepting the transplant? Hannah doesn’t do so for fear of jeopardizing Max’s decision to go ahead with the liver transplant.

OK – there’s one moral failure. Then, as the show gets close to ending, we learn that Max had known all along of Hannah’s plan to end the relationship but went ahead with her offer of a transplant thinking that would make it impossible for Hannah to end their relationship. Moral failure number two.

On Grey’s Anatomy, in I Will Follow You Into the Dark, there are actually two story lines which deal with cancer. The first deals with two sisters and a brother dealing with a genetic form of stomach cancer. The second deals with Izzie coming to grips with her metastatic melanoma involving lesions on the brain and a prognosis of only several months, less than a 5% survival rate.

In both cases, questions about relationships are as important as any of the medical details about diagnoses and prognoses. Both nights found my wife and me discussing the importance of honesty and integrity and the maintenance of hope in the face of frightening medical statistics. What are the responsibilities of patients, family, friends, colleagues, and care-givers to one another?

I think it’s safe to pronounce unequivocally that the subterfuge of both Hannah and Max in the House episode is precisely where we don’t want to go. The show, in other words, is instructive in demonstrating what not to do.

In the Grey’s Anatomy episode, the family members dealing with proactive measures to prevent stomach cancer deals with how one balances fraternal love for one another with unnecessary pressure to conform. No answer is proposed, but the question merits much more thought.

One example might be situations of religious ideologies which propose that one’s eternal destiny is determined by decisions made before death, in which case pressuring family members to convert becomes a life and eternal death issue. How do family members deal with one another in the context of a diagnosis of cancer and a terminal prognosis?

The storyline dealing with Izzie’s prognosis is apparently more straightforward. Patients and their families must maintain hope one way or another. But the difficulty comes when we reflect on how we maintain hope. Certainly we cannot do so by maintaining ignorance.

In addition, patients need to take their time and associations seriously as they contemplate the time left to them. Sometimes it will be necessary to drop relationships in order to spend more time with those who are more loving and nurturing. No apologies necessary. Some people may be hurt in the process, but if we are told that time is short, then the company we keep is even more important to cancer patients with terminal prognoses than it is with the general public.

Is it just me, or is TV getting better these days?

An Unwanted Journey: Day 1205 - Just an update

As my wife reminds me occasionally, not everyone who reads my blog regularly wants to delve into reflections on community, news stories about cancer therapies and statistics, books I'm reading or dozens of other esoteric themes. Some simply want to an answer to a simple question - "How are you doing now?"

The question is similar to how Twitter advertises itself these days - "What are you doing now?" Twitter is a service which works much like a short-and-sweet blog that answers that question with messages of 140 characters or less.

So, one way to satisfy those who want to know "how" I'm doing is to incorporate a gadget in my blog with Twitter Updates. In fact, that's what I plan on doing. I'll use my Twitter account for all kinds of things, one of which will be quick daily answers about how I'm doing and any other short messages about my medical or emotional condition.

You can see the updates in the side bar just below the section About Me. If you're a Twitter fan, there is also a hyperlink allowing you to become my follower, which means that your own Twitter account will be linked to mine thereby allowing you to access my messages on whatever application or device you choose which supports the Twitter application interface.

So what's the answer anyway?

Sleepy and a little off balance. I have to assume that my need for more naps and sleep is connected to the new breakthrough pain medication I'm taking. I've replaced my morphine with hydromorphone. At the same time, I've noticed that my balance isn't quite as good as it was before. Otherwise, there doesn't appear to be any other major change. I've had a few more nightmares, but I don't know for sure that it is related to the medication.

For whatever reason, despite the fact that my legs look a lot better these days (most of the edema is gone leaving my legs about the size they were before edema and blood clots), the itchiness and rashes continue to come and go. In fact, I will often awaken in the middle of the night only to find my hands on my legs scratching away. I've taken to wearing cotton gloves to prevent doing too much damage.

My wife and I are also talking more about memorial service planning. One day last week, on a beautiful, sunny day, she went to a local funeral home to get information and tour the facilities. Because of what we discovered, she will likely decide to have the memorial service at their facilities, followed by a reception upstairs. The services they offer are extensive and the costs quite reasonable. But it still feels odd doing this kind of planning at my age, especially when physically I'm feeling not too bad this week. Still, it's good to have some time to talk with her about these issues, to defuse some of the emotion attendant to funeral planning and to get some decisions made and set aside.

I feel mentally and emotionally stable today. I'm reading a wide variety of material, watching some good sports on TV, and enjoying favourite murder mystery series on DVD. So the world is a pleasant enough place.

For more details, stay tuned for rtfax tweets...

An Unwanted Journey: Day 1201 - Covenant Players

My cousin has been part of a Christian ministry for a very long time. The ministry is different from what you might expect. It is an international repertory theatre with more than 61 units on 6 continents doing dramatic presentations in more than 10 languages.

As their web page says, "Drama is what we do." Imagine that! A ministry that tells stories, especially plays exclusively written by one man, Charles M. Tanner (he authored about 3000 plays). Performances are done in churches, schools, on the street, to military units, in prisons, etc.

The emphasis for Covenant Players is on communications, especially stories retelling the gospel by means of drama. They have been doing so since 1963.

I am intrigued with this ministry - not so much their statement of faith, which is virtually identical to many evangelical ministries - but by the medium chosen to communicate with their audience. As a former student of the origin and developmental trajectory of early Christianity, I think their chosen emphasis a wise and potentially rich one.

But in my private communications with Anita, now working in South America, it is clear to me that members of her team are just as concerned with community as they are with communications. After all, conversation occurring among people who care for and depend upon one another will naturally gravitate towards communal transformation, not just individual transformation. That's way, on a superficial level at least, the gospel of Christianity is just as much about building a fellowship as it is about individual rebirth.

In a recent reflection shared with Anita by David and Sarah Kitch, the point was made that "mountain top" experiences are enriched by sharing, by conversation, by simply being in the moment with the other person.

I relate this to my own experience dealing with cancer. The times when a care giver, a friend, a family member, or a colleague have spent time by my bedside simply giving in to the flow of conversation - those are times that come close to "mountain top" experiences. There is a healing process involved. There is something miraculous about the ebb and flow of dialog, a kind of dramatic replay of the gospel story told of Jesus and three of his closest friends on a mountain, a story commonly called the transfiguration.

Medicines cannot deliver this. Radiation, surgery, chemotherapy, hormone therapy. None of them come close.

I wish many more years of success for the Covenant Players in bringing the drama of the gospel to those in need of community. As long as the teams allow open-ended conversations to evolve naturally, I strongly suspect that all will benefit...shall we say, dramatically?

An Unwanted Journey: Day 1200 - Community, Stories, Conversations

It's been close to a month since we last had a home visit from our palliative care physician. That's usually a good thing, since he would certainly have made an earlier visit should there have been any symptoms reported by me or the CCAC nurses that were worrisome. As it turned out, Monday I had decided that I would request a visit as soon as possible anyway.

It was a day of incredible fatigue. I slept most of the day and night. Each time I got up to visit the washroom, I felt the pain radiating throughout my entire body with the breakthrough pain medicine unable to alleviate it. Being the melodramatic drama queen that I am, I kept hearing in my mind T. S. Eliot's The Hollow Men:

This is the way the world ends

This is the way the worlds ends

This is the way the world ends

Not in a bang but a whimper.

If it had been just one day, then I'd say no big deal. But there have been several like it in the past couple of weeks, leading me to wonder whether the "miracle" days were over and I was experiencing just another phase of the disease process.

The stories we tell are important. They're important even if the narrative is something created on the spot and just for ourselves (such as extracting a particularly negative image from Eliot's poem). They're even more important if created in the context of community, out of continuing dialog about who we are and what our purpose is. They tend towards immortality if they have a mythic quality, say a parable repeated again and again, especially as answers to questions without definitive answers - you know, something like what Jesus did repeatedly either to defuse religious confrontation or as the only way to talk about metaphysical realities.

The cancer experience - especially in the context of the end of life - may entail healing through storytelling. Healing of the individual, healing of care givers, healing of visitors and even, occasionally, healing of many through the ripples of time and place. That kind of healing is restorative. It is all about generosity, possibility, and, oddly enough, accountability.

One example might be an extended family which makes itself accountable to ensure each member of the family does the recommended colorectal cancer screening recommended for all first-degree relatives. It might mean school children making themselves accountable for spreading information in their schools about colorectal cancer and how readily it can be prevented.

Cancer in the community provides opportunities for generosity. I've seen it many times and been the beneficiary. It also is an opportunity for the community to look at possibilities for caring for patients outside the borders of medical institutions and services.

It can also be the occasion for amplified pain and horror. As soon as the narrative of cancer includes a retributive context, pain increases needlessly. An example might be the individual patient or family members blaming themselves because of repeatedly telling themselves that they were negligent about nutrition or getting a diagnosis quickly enough. Since the story never changes, and since that narrative precludes healing, I'd have to say that it's a bad thing, a way in which the community surrounding the patient is corrupting the healing environment.

I guess what I'm saying here is that one must be constantly on guard about the stories one tells or allows to be told, about the conversations held in his or her presence. Cancer, after all, is about so much more than the disease itself.

An Unwanted Journey: Day 1196 - Yet Another Starting Point

"Living better through chemistry".

It might be the slogan for any number of pharmaceutical companies these days. But, as anyone who has undergone chemotherapy can vouch, no matter how effective certain chemical cocktails might be at targeting cancer cells, the treatment itself is about consuming the right amounts of poison at the right time. The hope is that doing so will kill some cells, leaving enough of the body's self-healing resources to return the body to a healthy equilibrium afterwards.

Similarly with surgery and radiation and other current forms of treatment. The cancer is attacked brutally and with the most potent weapons currently available, leaving the healing to occur naturally.

Current cancer treatment modalities do not heal, they injure precisely and powerfully. At some point, the patient may decide that his or her quality of life has suffered too drastically, that it would be better to let the disease run its course while alleviating pain and other symptoms as best one can.

That was my decision when my chemotherapy became harder to bear than the alternative. The alternative was the prospect of my body succumbing to metastatic colorectal cancer as liver lesions grew and multiplied in other parts of the body. Presumably, the liver will become incapable of functioning, leading to death within a few days.

The decision was a gamble. Or, to be more precise, it was a matter of educated guesswork. Never having died before, I don't know exactly how much pain is involved or even whether it will be the liver that delivers the final blow. It might well be a pulmonary embolism or heart attack with an even faster end game.

So, left with few certainties except that of death (even my chemotherapy left almost no hope of "cure"), most people will drift towards hope for the miraculous. I certainly do. There isn't a day goes by in which I don't imagine the cancer disappearing mysteriously and magically. These thoughts are, ironically, most likely to occur on those days when I'm feeling my best, when the sun is shining in through the patio doors, my wife and sons and I have eaten a wonderful meal and are watching a favourite television show together, and are engaged in stimulating conversations.

When there is pain or mysterious rashes or depression, I am still reminded that I have nonetheless better quality of life than if I had continued chemotherapy. On such days, I know that I'm going to die, but I don't think about magical cures. I just hope that in dying, I am courageous, that I maintain my values in the face of pain and lost faculties, and that my wife and children will recover and prosper in my absence. Those challenges are easier to address than hope dressed up in magical cures.

Yesterday, I suggested that there are still some "first efforts" to challenge me these days.That's right! Each day that I survive is like another starting point where I can decide to do something, anything, to proclaim that I am alive and kicking. This month of February I've alluded occasionally to the healing power of community and my naive suggestion that somehow writing blogs and being part of a virtual community is a healing endeavour. The purpose of this community appears to be to collaborate with one another on issues surrounding life, death, terminal cancer, care giving, and the enjoyment of life.

It occurred to me today, in answering blog posts and other correspondence, that one worthwhile "first effort" might be to study community itself and the possible mechanisms and processes whereby community offers healing to its members. That theme offers an interesting counterpoint to themes of individual transformation I've addressed along the way in my unwanted journey.

So I'm going to do some preliminary research. In the meantime, I would suggest readers consider checking out my niece's website - edeva.ca - to see some ideas in action about building community that benefit all but focus on the contributions of women, young women in particular.