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.