If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.

Wednesday, March 23, 2011

It's Official

Yesterday I saw Dr. George and told her my thoughts about stopping chemo. She was in complete agreement. When the Chemo Kaiser says no more chemo you know it’s time to stop. I had made up my mind last week but didn’t see her until this week.

I asked Dr. George how much time I could expect, a question she doesn’t like to answer. But I pressed her. She said that once people stop chemo it’s usually six to twelve months and right now my liver and kidneys are functioning adequately so that’s a reasonable expectation. That’s actually more time than I thought so it was encouraging. That much time may allow me to make a trip to Arizona and/or Florida. I plan to spend a day fishing with my brother. I haven’t gone fishing for a long time and to do it with him will be fantastic. And it was his idea! And we cannot overlook the fact that six months gives me another summer, my favorite time of year. Soaking in the sun is likely to buy me even more time. Most people don’t know it but I run on solar energy.

I go for paracentesis again tomorrow. Depending on how much fluid they get I’ll be making a decision about the implanted catheter.

Carry on.


Wednesday, March 16, 2011

A New Phase, A Changed Life

Last Thursday I had blood drawn. On Friday I found out that my CEA count has shot up to over 700. The chemo is not working. Furthermore, my white blood count was way down and Dr. George said I would not be able to get it this week. So it seems clear. My body is not tolerating the chemo the way it’s supposed to be given and the way I’m getting it is not working. It’s time to stop chemo. It’s a tough decision but one that I knew was coming sooner or later. So now this battle will be fought by me, my body’s natural defenses, and God.

Today I went for paracentesis after eight days since the last one. They only got 7 liters out which is encouraging because last time it was 12 liters after eight days. That and the fact that I felt so much better afterwards really boosted my spirits.

I’m very close to getting the semi-permanent catheter implanted but I’ll probably wait another eight days and have paracentesis again. If the volume continues to decline I hope to avoid the implant.

I’m very happy to report that I was able to check off another item on my bucket list. There was an anonymous comment left on my last blog post that read in part “… I want you to know that you have changed my life. You have taught me to be more courageous, more grateful and more aware.” I don’t know about courageous but I have often said that this disease has made me more grateful, more aware of other people and more appreciative of things I never noticed before. If my blog has helped someone live their life with the appreciation I wish I had lived mine with then I have a accomplished something special. Some people have alluded to this in the past but anonymous is the first one to tell me I changed his/her life. So I’m checking it off the bucket list. Thank you anonymous.

Carry on.


Saturday, March 12, 2011

The Gifts Keep Coming

Last night Terry and I attended the engagement cocktail party for my son AJ and his fiancee Lindsey. It was a gift from God that I was able to attend. My ascites was at a very tolerable level and I had some strength. Had it been a week ago they would have had to roll me in. At the risk of being morbid, for me it was like the wedding. I don’t think I’ll be here next year when they get married.

At one point a song came through the music system that inspired me. Terry was involved in a conversation but I took her hand and said “come dance with me”. Mind you now this was not an event where people were dancing. And mind you Terry is much more inhibited than I and this is not something she would normally do. But she did. So in a little corner of the room, next to a speaker, we danced. And every man in the room was jealous. Can you guess what song it was?

The blessings keep coming.

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Wednesday, March 9, 2011


Yesterday I had the ascites fluid drained again after only eight days since the last one. For three or four days prior to that I felt miserable. They took out 12 liters. Twelve liters in eight days. It's coming back more frequently and in greater volume. I'm not sure what that means but I know it's not good. I'm looking deeper into the permanent catheter.

I scheduled an unplanned visit to Dr. George tomorrow. I want to have my blood drawn to check my CEA. If there's no progress I will stop chemo. If there is progress I may stop anyway. Quality of life is becoming more of an issue.

Carry on.


Saturday, March 5, 2011

It Should Be Me

Did you ever tell a loved one who was sick or injured that you wish you could take some of the pain, that you wish it was you instead of them? My mother has said that to me. And now she has actually done it. Last week the ulcer that led to the discovery of her lymphoma perforated. She was rushed into emergency surgery and they removed two thirds of he stomach. She is now in the midst of a difficult recovery. This is very similar to the surgery many people with esophageal cancer have to endure. I did not. It’s difficult to watch her suffer and I wish I could take some of her pain.

I had a paracentesis treatment on Monday and chemo on Tuesday. The fluid is back already and I’m very uncomfortable. But I’ll carry on.