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.