Monday, November 17, 2008

An Unwanted Journey: Day 1090 - A Little Composure

composure

Her name is E. She is a close relative by adoption. She has been a faithful correspondent and supporter throughout my 3-year ordeal with cancer. I recall vividly once in 2006 while I was hospitalized when she said to me, "Sometimes a day at a time is too hard. When it is, just make it an hour at a time."

Several times yesterday and then again in the early morning hours of today as I struggled through the second phospho soda preparation, I would look at the clock on the wall and remember the wisdom in her words. And so I took it an hour at a time, managing the little crises as exactly what they were - little crises.

By close to noon, they were ready for me in the endoscopy unit and I was as close to physical readiness and composure as could be expected. As I lay on my side, I watched the gastroenterologist explore the colon, finding almost nothing of consequence, but settling in finally on the anastomosis of the original low anterior resection surgery from late March 2006. The granulation tissue surrounding the site where the remnants of the rectum and the colon were reconnected was clearly fragile and would ooze blood when prodded and when the doctor took her biopsy samples. There was just enough blood to have been the cause of the rectal bleeding. As far as the gastroenterologist was concerned, I could go home again.

But, of course, there is so much more to be determined now that this small piece of the puzzle has been found and put into place.

Later in the day, as my wife and youngest son and I consulted with my medical oncologist, we had to come back to the implications of knowing the source of the bleeding. All it really means is that blood thinning injections have caused, yet again, rectal bleeding. We cannot go ahead with daily injections. That would be too dangerous. This means that the venous clot in my left leg cannot be treated directly.

Here is where we all learned something from the oncologist that we didn't know before. We have probably all heard of surgical procedures used to dislodge blood clots, especially around the heart or major arteries leading from the heart. But, as it turns out, when it comes to venous clots, there are no equivalent surgical procedures.

So, it is what it is.

I have a clot that will probably stay the way it is for an indeterminate period of time. Because of the underlying adenocarcinoma (like some other cancers), I am prone to clots. When you add on Avastin, you intensify the risk. When you eliminate use of blood thinners, then the only defence I currently have is the IVC filter already in place to protect those clots or clot fragments travelling back to the lungs and/or the heart.

Where does this leave us in regards to chemotherapy?

Well, at the very least, Avastin is off the table; it's too risky. Unfortunately, it is the Avastin that is the component that provides the greatest hope in making my metastatic colorectal cancer a treatable, chronic condition. Without the Avastin, there is now no chemotherapeutic, palliative or otherwise, option to mitigate the risk of death from MCRC. In a phrase, the "cancer is going to get me". Although it may be clotting or bleeding that gets me first.

We can treat me with FOLFIRI, but I've already demonstrated high sensitivity to toxicity of these drugs and reduced tumor responsiveness. We can try a milder capecitabine in oral form, but again all that does is provide 5-FU in lower doses, meaning even less chance for any kind of therapeutic effect, even though the toxic effects remain.

Or...we can stop chemotherapy. This would mean transfer of primary medical care at the Grand River Regional Cancer Centre from my medical oncologist to the Pain Management team who would monitor me in regards to pain, test results and progress of the disease, and then help ease me over to hospice care as required.

As it turned out, my spiritual care provider also arrived in the room at the time my medical oncologist, my wife, and son and I were discussing the medical options. Afterwards, we talked with him about making such tough decisions. There were tears, expression of values, thoughts about weighing pros and cons, more tears, with an eventual composure in a decision which only needed to be ratified with my other son before being acted upon.

I will be stopping chemotherapy.

In the evening, my eldest son and wife and I reviewed the scenarios. True, I can no longer walk effectively. True, I am in much worse shape than before attempting palliative chemotherapy. But with the help of the pain and symptom management team from CCAC and with appropriate household equipment and setup, I think we can forge a home care solution that will allow me to be with my family and to find days of fun, fulfillment, and joy for the time that remains available to me.

Nobody is making any predictions about how long that time might be. But clearly, at least statistically, it's not long. My medical oncologist has had at least one patient who survived for close to a year, but given all my existing conditions, who knows?

But there is a sense right now of peacefulness, of composure, of acceptance about a decision for the road ahead.

5 comments:

Anita (Mix) said...

Don;

I have been reading your blog regularly - with my stomach ending up tied in a knot and a prevalent, "No!" screaming silently in my heart just as frequently.

I am so sorry. (Inadequate words that they be.) Like others who have commented I keep thinking, "Don is due for a good turn of events soon - positive news to encourage him."

I am thankful for your sense of peace, composure and acceptance - admire it - perhaps because I have a hard time not feeling a sense of anger about it all.

I continue to hope for you, to reach for the 'inexplicable turn' because it sometimes occurs ... and to trust that you will beat all odds and prove the exception to the rule.

May the peace you have found in this moment sit tight with you.

Anonymous said...

Don,

Jackie and I are thinking of you and your family.I trust the judgement of your plans going forward.Your intrepid spirit
and your blogs are truly inspiring.

Derek

Brie said...

Don,
I've read your blog daily since I found out about it. Originally I read it faithfully to find out how you were doing. Then it gave me a way of letting you know that I was one of the many people in your life thinking of you regularly as you travelled along your path.
As I continued to read it,'though, I began to realize that every time I read it, I was taking a little piece of it back with me into my daily life. There was always something you said, or some way that you said it, that grabbed me, stayed with me, and added, in an undefinable way, to my life. I thank you for this gift you've given.

As your journey continues, may peacefulness be your constant, loving companion.

Hugs to M and the boys (actually, I guess I should say "the men" .... they're not exactly boys anymore, are they? :-)

Brie

Don Spencer said...

Anita,

Thank you for your thoughts and reflections, not to mention your expression of sympathetic frustration. Yes, there are definitely times when I want to scream back at the world. Instead, I usually just curse under my breath and hope too many people don't hear what I've said.

I am still hopeful for something like "an inexplicable turn", especially when it would give us all more time to ruminate on what the metaphysical implications of such a turn might be ;>)

Honestly, though, I simply want more time with reasonable health to enjoy life. As you know, I find the world endlessly fascinating. Every day I discover new things and happen upon items that elicit a kind of "Wow, that's cool. I wonder how it works?" response.

It's now early morning on Wednesday, and the peacefulness continues unabated. I am grateful for that.

Love,
Don

Don Spencer said...

Brie,

Thank you so much for what you have written. That has been precisely one of my objectives in maintaining this blog, giving people not only some information about what is happening and how I and my family are dealing with the situation, but also to provide opportunities for my readers to reflect on their own lives.

Ultimate issues often escape our attention, pushed aside by mundane reality, doing a job, making an income, raising a family (yes, as we both know, our "boys" are now grown men!). Church has traditionally offered people a weekly respite from such reality and a chance to reflect on ultimate issues. Even though my blog is no substitute for that, I hope it gives my readers a chance during their work weeks to put life's details into a broader perspective. I'm glad some of what I have written have had that effect for you.

Thank you again for being part of this little community.

Love,
Don