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.