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.

Thursday, July 29, 2010

Larry Alvey

Yesterday Terry and I went to her mother’s house which is now vacant. We had to move some things out, do some cleaning and weeding and try to make the house more saleable. I couldn’t help but think of Larry Alvey while I was doing it. Larry made sure that everything that could be done for his family was done before he left them. He wanted to make sure everything was in order. The last thing that was weighing on Larry’s mind was cleaning up a house that he and his wife Marilee had to dispose of. It bothered him that he was no longer able to do that. His friends organized a group that went and worked on the house for several days and on Tuesday the work was completed. And then Larry passed. Larry was diagnosed with stage 4 esophageal cancer in May of 2009. His battle was similar to mine, including SIR Spheres treatment. I couldn’t help but wonder again today why am I still here. I’m eight months beyond Larry and yesterday I was able to do physical work. I had to take many breaks, not being able to go more than about 20 minutes without resting. But that’s not bad considering. But why me? Larry was one of the finest men I ever “knew”. He was a captain for American Airlines, flying 777s. We was doing a job he loved. He raised good Christian children and put them all through college. He took care of his wife, making sure she will be ok financially. He not only practiced his religion, he lived it and shared it wherever he went. His writings in the blog he maintained with Marilee taught me something very important about God. I haven’t discussed it specifically with anyone yet because I don’t fully understand it. I had hoped to discuss it with him one day and learn more. So why me? Larry deserves to be here more than I do. On the other hand, Larry deserves Heaven more than I. Larry fought his battle with strength, dignity, love and faith right to the end. Larry or Marilee once commented that they were following me on this cancer journey. That was wrong. Larry was leading the whole time. I know he’ll continue leading me by his memory and his example. I think I may even hear from him now and then. Carry on Captain. -------------------------------------------------------

Monday, July 26, 2010

Why Am I Here? Where Am I Going? How Do I Get There?

Everybody wants to go to heaven. But nobody wants to die. Well then how do you get there? Unfortunately we have to die to get to heaven. I am in the process of accepting that. I’m still having trouble with it but I’m getting there. Unless you are killed suddenly and unexpectedly, I think dying is a process. Even people who die suddenly probably go through the process. It’s just not as obvious. I think that when that process is complete, it’s time to go. I think that the process consists primarily of achieving levels of understanding, loving, accepting, forgiving, and being at peace with yourself and your God. It has been said that before you die your life flashes before you. Recently I transferred all of the family videos I had on VHS tapes onto DVDs and gave them to my children. In the process I viewed all of those tapes. This wasn’t exactly a flash but I certainly relived those times in my life. It wasn’t simply seeing those times again. It was feeling those feelings again, thinking about how the children have grown and matured, thinking about what I have learned since then. I think that learning is an important part of the dying process. I believe I have learned a lot recently. I have a better understanding of why some things happen in life. I think I have more tolerance for people than I had before, more compassion. I see animals differently now. I always loved animals but now I see them more as creatures of God. It’s weird, but I seem to feel them as much as see them. I have heard people say that animals are “lesser” beings than humans. They lack free will and therefore they cannot make choices so they cannot go to heaven. I don’t agree. I think animals are automatically going to heaven. I have grown spiritually. I pray more than I used to but I also talk to God. And now I pray and talk to Jesus and Mary which I never did before. I have come to think that just as important as talking to God is listening to Him. But that’s much more difficult. When you think about all of the things that happen to us and all the things that happen around us, it’s not easy to understand what God is saying to us. I’m not a good listener. But I’m learning. I’ve been trying to understand what God is telling me by allowing me to outlive my prognosis. There’s a reason I’m still here but I don’t know what it is. I think I’ll be here long enough to walk my daughter down the aisle in August but that’s not why God has left me here. That’s a gift he’s giving me along the way. I would love it if the reason I’m here is to save a life. But I know I don’t get to pick the reason. I have to keep listening and try to hear His message. When I was first diagnosed Terry and I made sure some financial things were in order. I tried to teach her about some household things that she was not familiar with, things that I always took care of. I think she’s forgotten much of what I told her. It’s been almost two years. Lately we’ve been thinking more along the lines of selling the house and downsizing. That will make it easier for her when I go. That’s one of the advantages of knowing you don’t have too much longer, an opportunity to plan. I believe in God and I believe in Heaven. I believe that there is an eternal reward for us when we die. But if that’s true, if I truly believe, I should be eager to go whenever my time comes. I’m willing to accept it but I’m not eager. Maybe my faith is not strong enough yet. So I’ll just continue living as long as God let’s me, trying to learn along the way. I’ll continue the process. But maybe I’ll be a little bit of a jerk now and then so I don’t get there too quickly. Carry on. ----------------------------------------

Thursday, July 22, 2010


Today I got the results from the blood test that was taken Tuesday, before the second treatment of FOLFOX. So the test reflects one treatment. My liver enzymes are still elevated. Hopefully that's from the shock to the liver from the SIR Spheres and the levels will gradually go back down. The good news is that my CEA count has come down from 58.4 to 41.1. That's a decent drop. The CEA count is used to monitor tumor activity. Although it's not considered 100% accurate, my count had been rising. Turning it around is significant. It's early in the game and there's no telling if or how long this regimen will continue working but it's a good start. It should buy me some more time. I'm very thankful. Please continue praying for Larry Alvey. He's at a very difficult point in his battle. Carry on. --------------------------------------

Sunday, July 18, 2010

The Amazing Club That No One Wants to Belong To

I belong to a “club”. It’s members are all the people who have esophageal cancer or have been touched by it. They are all remarkable people and there is definitely a special bond that we all share. Over the past two weeks I saw two more examples of it. I was contacted by Travis’s mother-in-law, Mandy’s mother Judy. She is sending me a supply of a nutritional supplement that she had obtained for Travis. What a kind gesture. What a kind person. If you’ve read any of Mandy’s blog I’m sure you got a feeling for what an amazing person she is. It’s easy to see where she got it from. I was also contacted by Paul, another patient. He’s from close by in New Jersey. Paul told me a little about his story. He’s doing very well. Paul told me that he read my blog and noticed that one of the things on my bucket list is to get to the top of Pyramid Mountain. Since he and his wife are avid hikers, Paul offered to take Terry and I up there, providing support as necessary. We hope to do it in the Fall when it’s a little cooler. You see why I say this is an amazing club. These are two strangers reaching out to help me. The chemo I started almost two weeks ago has been rough. Just being on the pump for two days is a pain in the neck. Early on in the cycle I was very constipated. That lasted about two days. Then there was about a week of diarrhea. Through all of this I was very weak, slight nauseated and had no stamina. It wasn’t until yesterday that I felt normal again. Of course normal is not what it what it was two years ago but it’s my new normal. On Tuesday I start the cycle again. Please pray for Larry Alvey. He’s not doing well right now. Carry on. -------------------------------------------------------

Friday, July 9, 2010

Let's Try This

On Wednesday I received chemo treatment #33. We began a new regimen referred to as FOLFOX. It includes the chemo agents FOLinic acid (leucorin) Fluororuracil (5-FU) and Oxaliplatin. I am still getting Herceptin for dessert. Herceptin is the breast cancer agent that is supposed to have some effectiveness for people whose tumor tested positive for the HER2 gene. The original regimen I was on, which gave me a nice long response, called DCF consisted of Docetaxel (Taxotere), Cisplatin and Fluorouracil (5-FU). Leucovorin was used to enhance the effectiveness of the other agents. I began getting Herceptin about half way through this regimen. The regimen we just ended consisted of CPT11 (Irinotecan) and Cisplatin topped off with Herceptin. There was very little if any response from this. Notice the similarities in these cocktails. Cisplatin was used in the first two. The third includes Oxaliplatin which is another “platin” similar to Cisplatin. Leucovorin and 5-FU are both contained in the first regimen as well as this new one. Herceptin is consistent with all of them. DCF, the first regimen, is considered by most to be the standard frontline treatment. It’s response rate is 60% and thankfully I was in the 60%. I don’t know the response rate for the others but I believe they are not as good. We’ll see. Doctor George said there are several others we can try. The expected side effects from the FOLFOX regimen are the usual nausea, fatigue and weakness with a strange additional one. Some patients develop a severe sensitivity to the touch of anything cold whether it be something cold coming into contact with she skin or something cold taken orally. Taking something from the refrigerator feels like an electrical shock. Drinking something cold makes it feel like your throat is closing up. I did not experience this but they say it is a cumulative reaction so I have something to look forward to. The sensations are caused by the Oxaliplatin’s effect on the nervous system. It is the Cisplatin, the other platin I’ve been on for so long now, that causes the neuropathy, another effect on the nervous system. Gotta love those platins. The 5-FU component of this regimen is administered over a 48 hour period so I’m using the infusion pump again. Today I went back to the chemo lounge to be unhooked from the pump and get a little hydration. I got the results from the blood that was drawn and tested on Wednesday. No CEA test was done but the liver enzymes came down a hair which is good. Also my creatinine, a kidney function indicator, is back to within normal levels. That’s very good because I was concerned. Long term chemo can damage the kidney and it could be something that makes continued chemo dangerous. I’m glad to know I can have more! Carry on. -----------------------------------------

Monday, July 5, 2010

Angels Among Us

When I was first diagnosed my daughter Heather enrolled me in a program called Chemo Angels. It’s an organization of people who send cards, notes and/or occasional small gifts to people going through chemotherapy. Patients are assigned one or two angels who communicate this way on a weekly basis. There is no obligation or even expectation that the patient respond. Since that time I’ve received hundreds of cards from dozens of angels. Each one brings a smile to my face. It’s a bit of sunshine that often arrives during a dark time. For more than a year now there’s been an angel assigned to me by the name of Chris. Chris has sent me a card faithfully at least once a week and each one contains a little bit about what’s going on in his life with his wife Tricia. He often comments about what he read in my blog. And each time he offers words of hope, encouragement and inspiration. Chris is a genuinely good person. He works with children as a guidance counselor and you can tell he is very well suited for it. He has donated more than twenty gallons of blood in his life. That takes commitment. Chris has helped me through this battle. If you’d like to sign someone up for the Chemo Angel program here’s the link. Chemo Angels Than you Chris. Thank you Angels. -------------------------------

Thursday, July 1, 2010

Bits and Pieces

Well we got a short reprieve from chemo and the worries of cancer. Last week was my scheduled week off from treatment. Over the weekend Terry and I went down to Atlanta for our good friends Denis and Carol’s daughter’s wedding. Christy Ann was a beautiful bride and we thoroughly out time there. The only disappointment was seeing this girl who, since she was a child has promised she would marry me, marry someone else. Oh well. Right before we left on Sunday we participated in a private Mass at their home, offered by another long time friend, Father Flanagan. It was a perfect ending to a lovely trip. And then on Monday it was back to the chemo lounge. Lately they’ve been having me come back for hydration because my creatinine level is high. This is a reading on kidney function. So I went back on Wednesday. That’s when I got the results from blood tests taken on Monday. They were disappointing. My liver enzyme measures are still creeping higher. I’m hoping that’s due to the radioactive assault on the liver. We’ll see. More concerning is the fact that the CEA count is also still creeping higher. This is usually an indication of increased tumor activity. The actual number was 58.4. Normal is up to 4.7. Three weeks ago it was at 43.7. In January it was 21.5. Last August it was as low as 3.7 but at that time the lab was using a different methodology for testing so it’s hard to compare. Normal at that time was up to 2.5. Dr. George interpreted the reading to mean that this chemo regimen is not working. So next week we’ll change it up again. I’ll go into more detail about the new cocktail next week but for now I can say that it includes going on the 5fu pump again. Or as Larry Alvey would call it the 5Fme pump. I can hardly wait. For now I’m looking forward to the time until then. Terry’s niece Michele and her family are flying in from Arizona and we will spend some time with them. Our friends Linda and Phil invited us to a barbeque. The weather is supposed to be nice which will allow me to work outside a little. I plan to do it all. Carry on. -------------------------------------------------------