Monday, September 22, 2008

An Unwanted Journey: Day 1034 - Palliative Chemotherapy

No real surprises.

Avastin and Folfiri will be the drugs of choice, administered in much the same fashion as I received Folfox during the first chemotherapy treatment. We will go to the chemo suite every two weeks for about 3 months and receive an infusion of Avastin, leucovorin, irinotecan, and fluorouracil, followed up by another 46 hours of continuous 5-FU administered through the "baby bottle" I will carry with me after each cycle in the cancer centre (I'll get another PICC line put in place shortly after Canadian Thanksgiving in October of this year).

We have to wait for at least 28 days after surgery before Avastin can be administered since the drug has been linked with post-surgical bleeding, clotting and slower healing. There will also be another CT scan to use as a baseline to evaluate how well or how poorly the chemotherapy is working. After 6 cycles, we'll pause, do another CT scan and determine whether I'm responding to the drugs. If I am, we'll continue to the 7th treatment cycle and so on until we reach the end of what the provincial government will fund with Avastin (that is somewhere around 12 treatment cycles). At that point, we can continue with the Folfiri alone or switch to Folfox.

If the benefits of chemotherapy become minimal, there will be options to consider other drugs like Erbitux, delivered at a hospital in Buffalo, a monoclodal antibodies treatment, and even some clinical trials in Princess Margaret Hospital in Toronto. But, every time we try something different, the chances of a good response decline even further.

Twenty to 24 months survival is the average for someone in my situation. But my medical oncologist has clinical experience with patients who have endured beyond that length of time. And friends have just written to me a few moments ago telling me about a brother with a similar diagnosis who is still going strong 2 years after, playing golf, traveling and having good quality of life. As they said, there definitely is hope.

As far as eligibility for treatment is concerned, as long as there is some kind of useful response and I can get out of bed to receive treatment, I will be entitled to get it (apart from the bureaucratic nonsense and restrictions applied by the provincial government to Avastin treatment - which costs about $6,000 per month per patient). If my white blood cell count gets dangerously low, we'll take a break or do something to raise the levels. If the treatment isn't working, we'll stop...plain and simple.

Determination of quality of life, as you might well anticipate, will be mainly up to me. If I need a break, we'll stop treatment for a while and I can take a vacation for a week or two.

There will definitely be side effects to consider, but I probably shouldn't worry too much about that until the treatment is underway. Each side effect has a treatment plan which we can implement immediately, but some of the dangers of chemotherapy are life threatening - fever and infection being the two most obvious examples. Diarrhea, mouth sores, hand and foot syndrome, now we all know the drill.

Returning to work during treatment is one of the most difficult decisions to make. My oncologist made it very clear that almost all of his patients do not return to work, for a variety of reasons. They never perform their duties at the same level as they did prior to beginning treatment. They have to be very careful about infection. The side effects interfere with on-the-job duties. And, of course, there is the important issue of conserving energy and vitality for the fight to maintain one's health.

It' still my decision, so I'll be giving it a lot of thought.

But given everything we've considered thus far, I think I'm ready to go for the treatment.

I'm sad, to be sure. I can't help thinking about my wife and my sons and all the major life events for which I will not be present. But even more painful is the realization that when I am needed I won't be available to them. In a way, for me it's simple. They are the ones who will be stuck with those difficult "what if" moments and wishes that things could have turned out otherwise. But there isn't anything at all I can do about any of that except prepare well and meet my end as best I can. And, on the positive side of the ledger, I have time to prepare for end of life, to determine as much as possible the attitudes I will embrace as I face it, to enjoy the days ahead, and to leave a legacy of a life well lived and a death well met.

Having said all that...I'm hoping that people will look at me in two year's time, as my four-year-old niece did recently, and say, "You don't look sick!" Or even as my medical oncologist did today, "Apart from the healing from the surgery, you look really good." (he didn't like the looks of what remained of the blood blisters).

Quality of life starts NOW - tonight we order in pizza and I'm going to have some red wine for the first time since before surgery.

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