An Unwanted Journey: Day 1164 - Football

I never played football in high school or college. Football was never really on my personal radar for professional or recreational sports. Sure, I remember fondly those autumn weekends in Peterborough when I would get a call from one of my friends in college or university saying "Come on, we've got a group of about 30 guys going over to Crestwood Secondary School for a game of touch football."

Even though I was married at the time and studying at Trent University, I would almost always take the afternoon off and join my friends, especially if there was likely to be some good natured jock talk about CFL teams getting ready for the Grey Cup. The Ottawa Rough Riders were regulars for the fall classic and it didn't hurt that several of the boys in our group were originally from Ottawa.

But apart from those memories, the only times I cared about football since were when my sons played in a regional flag football league and when the Grey Cup and Super Bowl weekends rolled around.

Sunday marks the Super Bowl 43 in Tampa Bay with the Arizona Cardinals and the Pittsburgh Steelers. I plan on watching the game from the vantage point of my medical bed in the family room, although I don't know whether I'll be able to tough it out having already watched a Raptors home game against the Orlando Magic at noon.

If there is any professional sports game that can lay claim to best representing the American spirit, it is football. A recent book, How Football Explains America, was reviewed recently by Jeffrey Marlett in an article Gridiron Nation in First Things: The Journal of Religion, Culture, and Public Life. If there is a sport which both appeals to and repels (its super patriotism and full-blown militarism) me at the same time it is football.

Part of the attraction of football is that it imparts lessons. I received notice today from Carnegie Mellon University of another video being released of Randy Pausch talking about lessons learned for life from football. Randy is, as you recall, the inspirational person who died just this summer from complications in his fight with pancreatic cancer. His book and video have been very inspirational for me as I deal with my unwanted journey. The newest excerpt is embedded in this blog.

There is nothing specific to lessons learned in the fight against cancer in this video extract. These are general life lessons. But as Randy says, when there is an elephant in the room (namely, cancer), you really should introduce the elephant first. In addition, I find that part of the reason that I have an elevated interest in life lessons these days is precisely because I have cancer and because my prognosis is short. There is an elephant in my room and he seems pretty big.

An Unwanted Journey: Day 1161 - Cancer and the Improbable

One of my friends asked me yesterday how frequently Avastin treatments resulted in severely damaging consequences for MCRC (metastatic colorectal cancer) patients. I don't know the precise measure, just that statistically the percentage is very, very low.

Statistics.

Again we're back to an interesting phenomenon. The percentage of those receiving Avastin with toxic results is low. But for me personally, those statistics don't matter at all. You might say that even though terrible toxic results were highly improbable for the general population, for me they were almost absolute (100%).

But my question today is this. If highly improbable, and very damaging, events can occur for me personally, making my journey with cancer even deadlier, why can't improbable events occur at a personal level which twist the road towards happier, healthier destinations?

I'm not saying that I should ignore evidence and simply wish on a star. But I am saying that "black swan" events do occur, have already occurred in my own journey, and may well occur again. Why not consider the possibility that the results will be positive? In other words, if I'm feeling stronger and healthier these days, is it too much of a stretch to wonder if this might continue?

My friend (whose father died of colorectal cancer) often asks how I'm feeling. What he means is, apart from the medical test results and measures, how is my appetite, my energy levels, my interest and enthusiasm for life? If my answers to those questions are generally favourable, then act accordingly.

When you blend such folk wisdom with what we are learning these days about the impact of the highly improbable, there may be reason for me personally to celebrate. I don't know what tomorrow may bring, but today the sun is shining, the coffee tastes good, the book I'm reading is insightful and thought-provoking, and my wife has just come in the front door ready for a hug and a kiss - a good day.

An Unwanted Journey: Day 1159 Part 2 - Suckin' it Up

One of the side-effects of gabapentin is loss of mental clarity, exactly the kind of thing that happened to me as we attempted to deal with one of my pain issues, neuropathic pain. At the time it was happening, I lamely called it spasms.

Later, in discussion with the doctor, I discovered that the professionals had a more precise term for what I was describing - pain incidents. What was happening was an instantaneous onset of intense pain in specific parts of the body. In my case, it was across the top of the legs and would last anywhere from 2 to 20 seconds. It was so intense that morphine and other pain killers had absolutely no effect. The only recompense when experiencing the pain incident was the realization that the pain would dissipate in a reasonably short period of time, even though it might well return within a few seconds in an even more intense form.

When we started to treat this kind of pain with gabapentin, we started with one pill in the morning, adding another in the evening, and then finally adding a third pill around midday. By the time we had added the third pill, I was demonstrating the loss of mental clarity which prevented me from writing coherent blog entries. I was also saying and doing things which were uncharacteristic. We cut back on the midday pill. Since then I have gradually regained some clarity and coherency in speech and writing while keeping the pain incidents at bay. A decent trade off, I think.

But today, I realized that much of the "good" I was experiencing in finding a balanced pain management plan through appropriate dosages of morphine, fentanyl, and gabapentin was "purchased" at the price of a delusion; namely, that I was getting better.

Early this morning, I talked to my wife about possibly going to church. I wanted to see friends and visit with those who had been so kind in visiting me in hospital, at home, in sending email, and in bringing food and other goodies to the house. But as she reviewed with me exactly what the implications were of trying to get dressed, get into the car, remain seated for 90 minutes or so, get downstairs to the washroom if necessary (not to mention that any facilities wouldn't be appropriate for somebody in my condition) and then visit for awhile, the dream of being better began to fall apart.

I talked then about going to the movies. Better, but still unlikely. There would still be stairs, narrow seats restricting my massive edemic thighs and the length of time required to stay in one place.

Finally, we discussed the possibility of using a cane to get inside a Starbucks to pick up a coffee, possibly even sitting down in a chair for a few minutes.

By then I was realizing just how simplistic I had been. I crawled back into the medical bed feeling the pain in just about every part of my body, letting the tears flow as the reality of my situation washed over me.

Yes, I was a little stronger. Yes, I could use the cane and walker around the house a little better than before. The pain was largely under control. But I was still restricted to the family room and a couple other rooms in the house. I can't bend over even to start pulling on my socks. Anything I drop to the floor, I can't pick up. I can't clean up after myself adequately.

Basically, I'm an invalid who sometimes pretends to be otherwise. My computer gives me some freedom and ability which I greatly treasure, but if the power adapter cable comes loose, I can't even reach to pick it up from the floor.

I'm tired of pretending it's otherwise. I know it's important to remain optimistic, to hold on to milestones, to celebrate new life and simple pleasures. I'll try to do that, I honestly will; but sometimes I just have to see things the way they are, whatever emotional pain that might entail.

An Unwanted Journey: Day 1159 - Hugs and Hot Soup

Pain management is a lot like creating a recipe which you know in advance has to change regularly. Today, for instance, the recipe includes a ratio-Fentanyl transdermal patch which administers the drug continuously at a rate of 100 mcg/h. In addition to that, there is an optional "breakthrough" morphine, delivered in bolus infusions at a rate of 30 mg/ml (15 mg) per 60 minute maximum by means of a PDA pump administered directly by the patient "on-demand".

In addition, I have been prescribed gabapentin to deal with neuropathic pain, most of which we assume is generated by the degeneration of nerves brought about by blood clots in the legs.

Every day, I meet with a member of my pain management team so that we can review side-effects of the "recipe", the "butterfly" sub-cutaneous injection point, the PDA pump being used, the amount of "breakthrough" morphine being used in the previous 24-hour period, and so on. In addition, we review my sleep patterns, bowel functioning, appetite, urinary functioning and anything else that has arisen as an "issue" during the past 24 hours.

For example, we continue to monitor late afternoon and evening spikes in body temperature. Currently, my wife and I are able to deal with these spikes using cool cloths, removing clothing and bedding, sipping ice water and popsicles, drinking lots of water and cool fluids, and then finally relenting to the use of Tylenol when all else fails. In all cases thus far, the temperature will decline to a reasonable measure by bedtime.

What all this illustrates is that the recipe changes regularly, sometimes as frequently as every 24 hours (if you include the optional bolus infusions of morphine, then every hour).

But when the recipe is in good order, and the side effects are minimal, the work of the team declines to a quick daily monitoring which can often be conducted over the phone via a quick conversation with the nurse. At that point, other recipes take centre stage.

One of the nurses who works at our regional cancer centre's oncology unit in the hospital is a friend who we have known for many years. She is the master of what she calls the "hot soup and hugs" treatment plan. A couple days ago, she came to our house to deliver the treatment - home-made hot soup, bread, and hugs for all. From years of experience, she is convinced that the hot soup and hugs treatment plan is effective. I have to agree.

Another very good friend dropped by with a turkey pie from the Stone Crock in St. Jacob's and some muffins for our sons. Again, his recipe is a simple one - a little food and an excuse to share war stories about our various ailments. In a way, his recipe is about guy hugs.

What all these recipe stories illustrate is just how much the cancer patient needs both the professional and the personal, the medicines and the hugs, the prescriptions and the conversations. We need both and I wouldn't want to be the one who had to decide between the two.

An Unwanted Journey: Day 1158 - Milestones and Circles

Top photo is of "J", half-brother to our sons born just a few days ago.

Bottom photo is of "L", cousin to our sons born to my brother and his wife just a few days ago.

***

I'm curious about how exactly the end of life looks for someone with metastatic colorectal cancer.

But as my home hospice care companion and I talked about it yesterday, I realized that the last few days, hours, and moments probably look quite similar to many other scenarios where the patient has a balanced pain and symptom plan.

Lots of sleeping, interspersed with wakeful moments when family and friends are gathered around the bed reminiscing about the good times. Hand holding and hand squeezing, hugs when possible, kisses and free expression of compassion.

All of this is comforting.

What really matters then, after pain management is truly balanced, is struggling to survive, even if only to squeeze in one more family or social milestone. My son, for instance, celebrated his 20th birthday yesterday. That was a milestone I didn't want to miss. And there are others on the horizon.

M. asked me today what the next milestone should be. Our wedding anniversary is coming in early May. That might be a bit of a stretch. On good days, it seems entirely probable that I'll reach it. On bad days, getting to the start of March "madness" seems far more reasonable.

Milestones will always be subjective markers. There's no use arguing about them. But they do have value of motivating oneself to retain health and fitness as much as possible.

In addition to milestones, there are the fortuitous circle of life symbols which can be very motivating for the surviving cancer patient. The two photographs above are great examples of this. Our extended family was blessed recently with the birth of a boy and a girl, reminders that whatever happens with my generation, life will go on.

This too is very comforting.

An Unwanted Journey: Day 1152 - Mobility and Strength

We chose home palliative care because of one thing - quality of life.

When I was still in hospital recovering from a series of serious medical problems issuing from chemotherapy treatments, it became apparent to all of my medical team that my quality of life was quickly reaching a critical low point. Both legs had extreme edema, one with  life-threatening blood clots. And that was just the beginning of a litany of problems, none of which were direct results of the metastatic colorectal cancer with which I had been diagnosed.  Instead, they were results of treatment, not the disease. Quality of life had become a farce.

If somehow I had known what the future would bring by starting treatment with Avastin, I would obviously have opted to avoid chemotherapy completely. I would be mobile and in relatively good health. Yes, I would still have to face growth of the lesions in the liver and in the abdominal walls. But that would take time, and there were - at the time - no symptoms causing immediate health problems.

Given what would have been good mobility, strength, clarity of thought, etc, there would have been more choices available to me.

I might have considered continuing my career. Or I might have considered building my physical conditioning. I might have considered a kind of semi-retirement with time for travel. I might have ...

But here we are.

I am struggling daily with physical pain, mobility and strength. But I am making some progress while the disease continues its inevitable march towards something from which I can never recover. The way I look at it, though, is that any and all progress is worth celebrating.

Progress is about quality of life - mobility, strength, personal choice and control over bodily functions. Last week, here's what I achieved:

• walking in small areas around the house with the use of the walker or the cane
• less use of break-through pain killers (better management and control)
• clean up under my own strength and out-of-bed for standard things like washing up, brushing my teeth, flossing, etc.
• negotiated non-pharmacological approach to some pain management by committing to more physical movement and "exercise" thereby reducing the dosage of maintenance drugs

These are items for celebration.

Finally, I'd like to reassert our gratitude to family, friends, colleagues, correspondents, etc. who continue to express their support for us through calls, emails, and personal visits (call first!).

An Unwanted Journey: Day 1145 - Establishing Stability

I'm OK physically, mentally, emotionally, socially, and spiritually these days - although I hasten to emphasize that being OK is a struggle. Struggling with the world of pain and symptom management and home palliative care (including fever control, rashes, symptoms from the edema and leg clots) has been and continues to be far more complex than I ever anticipated.

Bio-chemically, my world is complex, fragile, fast and furious - much like your own - although with me and my team members paying much more attention daily to both objective (e.g. blood work, urine and stool samples) and subjective measures (e.g. pain scales, quality of life estimates).

Finally, organizationally, it seems I'm part of even more networks and teams than ever before, some of them merely virtual, but ready to be activated quickly (e.g. institutional hospice care).

So a lot has changed.

What hasn't changed is that M remains my lifeline to a larger social reality (hmm - Santa hats with flashing lights? - I wonder just how mentally stable that reality is?), although the landscape upon which I construct my reality has shifts slightly larger than what she would normally accept - hence, negotiation!

I sometimes try to argue with her that as a I drift from one state of consciousness to another, she should observe me carefully, as those are likely candidates for occasions when I will become particularly brilliant. Most of the world's problems seem amenable to solution to me during those states; it's just that I can't remember what the solution was afterwards.

At a lower level, even the non-sequiturs and one-liners I generate when drifting towards other states of consciousness are at least candidates for Saturday Night Live or a improv show. She didn't buy it. Clearly, I was just coming out of a drug-induced stupor.

The stupor makes the stupid guy write and say stupid things. That's her story and she's sticking it to it.

The morphine dosages will increase. As they do so, writing becomes even more difficult for me. I recognize the loss of mental capacity as I take longer and longer to find something I once had at my fingertips or to edit something that required only a few minutes of coffee and a metaphorical slap across the face.

OK - not as easy to do as it was before the drugs. That recognition is particularly distressing for me, not knowing whether or even if, some of that mental capacity will return.