Staying up Late

Robbie and I met with the onc yesterday to review my scan and blood work. I had suspected that the results wouldn’t be that good and Rob came along to be part of the decision making. As it turned out, the results weren’t good, but they could have been worse. My tumors continue to grow and have reached a size now where I can feel them – hence the liver pain I’ve had for the last few months. My CEA level (blood indicator of cancer activity) is also very high. Nonetheless, we decided to hold off a little longer on treatment to take advantage of the fact that I am feeling as good as I have since this whole thing started.


That may sound a bit odd since delaying treatment is not without risk, but the decision really goes back to my overall strategy. As an incurable patient, my goal is to maximize my quality of life and extend it as much as possible. The various forms of chemo available to me all have rather nasty side effects and each works for only a limited period of time. Therefore, I have to balance how much I get (and when) in order to preserve as much chemo-free time as I can get without risking a big drop in health. In this case, it seems worth the risk to try to extend my free period a bit longer. So, I will get new bloods and visit the onc in six weeks. If my levels haven’t deteriorated too much or the pain hasn’t gotten too bad, I might be able to squeeze out another six weeks off. It seems pretty doubtful that I could get any more mileage beyond that. So, six to twelve weeks is my new timeframe, barring an occurrence of jaundice or other problem.

As part of our meeting, Dr. S showed us the latest scan and compared it side-by-side to my January scan (ain’t technology something!). It was a fascinating lesson in anatomy as he identified the various organs and pointed out the tumors. They are definitely much larger than the last time I saw a scan – maybe a year ago – with the biggest ones about 1.5 inches in diameter (the size of a ball with the same diameter as a silver dollar). One is directly under my ribcage near the outer edge of the liver and is the culprit in my pain issue. But all the other bits and pieces are exactly where they belong and looked marvelous!

Another little item I learned was that I have something called Gilbert’s Syndrome (it's pronounced in the french, "Jzhil-bair"), which is neither terribly uncommon nor particularly troublesome to the average person. It’s a genetic defect that makes the liver a bit of an underperformer in processing bilirubin. Most people who have it (something like 1 in 20 people) would never know and never have a problem. It’s only relevant for me because at least one of the possible drugs I have not yet had can be tricky to dose correctly for we laggards in bilirubin processing. Also, one of the symptoms of Gilberts can be fatigue and I wonder if that might be a bit of a complicator for me as well. Curiously, people with Gilbert’s seem to have a lower risk of heart disease! So there’s a silver lining out there for the 1 in 20 of you who may read this and wonder how your bilirubins are doing today!

In short, I am just like the kid who asks Mom if he can stay up an extra hour ‘cause there’s no school tomorrow. Perhaps I’ll pay for it later or maybe I’ll just sleep in, but I’m going to try to take advantage of this chance to be chemical-free a little longer.