Friday, July 17, 2009

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.


Daria said...

Thank you for sharing your thoughts ... I can so relate to your second paragraph ... it's always a challenge to present information to friends and family.

I also want to thank you for brainstorming your future treatments on your blog. It will help others including me.

Brie said...

Hey Don,

Just dropping by to say hi. Hear J had a visit with you recently. I know he enjoyed it very much.

Funny how threads of all of our lives get woven lightly in and out and through each other's isn't it?

Hope you are able to enjoy this weekend's beautiful sunshine.