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, June 24, 2009
OK get ready for some deep thinking and some words of wisdom. Some of it comes from me and some of it from others who have touched me. First of all, I know there are some people who think I, and perhaps others in my situation, are guilty of hypocrisy or at least some disingenuousness. Guilty because of a new found love and respect for God, family, friends and life in general. These people think that we have these feelings only because we are facing death and were it not for that we’d continue looking at things the same way we did before. These people are probably right. But I have two things to say to these people. First, wouldn’t I be even less of a person if I didn’t reflect back? What kind of a person would I be if I didn’t try to improve relationships and appreciate whatever time I have left? Secondly, if you think I am hypocritical or disingenuous consider it an excellent opportunity for you to look back on your own relationships. Try to improve them where necessary and try to appreciate life now, before you are facing death. This is your opportunity not to be guilty of the same thing. Jonathan, another EC patient said to me “ I suspect the threat of imminent death sort of kicks us in the ass and gives us either dynamic insight into the real values of life or simply consumes us with fear.” I choose the former. Living with a disease that will eventually kill you is tough. It’s a constant balancing act between facing reality and trying to live life to the fullest; between not wanting the chemo that is destroying my body yet needing it to stay alive. There is a remarkable lady named Marny whose husband Dale died of esophageal cancer several years ago. Since then she continues to support those of us still fighting and to spread the word to people who may be at risk. She said something very important about the disease. She said “give it respect, not power.” That is the balance I strive to achieve. I get a lot of good advise from fellow warriors. Lois, whose husband Richard is also a patient said “Forget about statistics, cure rates, stages of cancer. Our lives are in the present and however long they may last, they are a priceless gift of time to be used immediately and carefully to the fullest. Use each day wisely and be thankful for the gift.” Very good advise indeed. Les, a patient who has been through 91 chemo cycles, shared a lot of wisdom recently. Les refers to the balancing act as “life in the middle ground”. He said “Although EC remains a deadly threat at all times, except when I am actively getting chemo, EC has little or no impact on my life……If I let this rob me of my life, it would be a personal tragedy. I feel optimistic that I will have more good days in abundance. I never have and never will allow the fear that a future diagnosis will indicate that EC has begun its final march. Even if this happens in the near future, I can look back on many wonderful days that I would not have had if I hadn't been willing to live in the middle ground”. As you can see this is an amazing club I am a member of. None of us wanted to join but now that we’ve been forced to we are glad it’s here and we appreciate the members. I want to end with my favorite quote. It’s from Mandy whose husband Travis is yet another patient. Mandy said “My future is as bright as my faith”. I believe. _____________________________________________
Monday, June 15, 2009
In my last post I mentioned that I didn’t like the words “quality of life”. That’s because when someone, particularly a doctor, talks to a cancer patient about quality of life s/he is really saying “enjoy it while you can because you don’t have much left.” Although I don’t like hearing “quality of life” I sure do like experiencing it. And I got more of it over the past few days. On Friday we were visited by Carol and Denis, our friends from Georgia. They were joined by Dina, another friend whom we haven’t seen for too long. It was an awesome night. We thoroughly enjoyed the visit. Today we had lunch with our friends Bruce and Rhonda. Bruce and I go way back although we don’t see each other often enough. Bruce and I have always been able to talk; about important things and unimportant things. That hasn’t changed. Rhonda, whom I haven’t known as well or for as long, is the perfect conversationalist and as I mentioned in a previous post she is a great person. I’ve come to realize that these special visits with friends we don’t see often tend to stand out and I write about them. I tend to overlook the “day to day” routine encounters with friends that are around all the time. That’s not right. They are very special too. We see our friends Linda and Phil fairly often and enjoy our time with them immensely. Their kids are great too and often we’ll all be together just enjoying the company. Once a month I get to enjoy poker night with seven good friends. I have been playing with some of them for more than 25 years. All of them are great guys and I look forward to our games as well as seeing some of them away from the poker table from time to time. We live in a great neighborhood. Everyone on the street is a friend and we see them regularly. Sadly we just lost Bob who has been a friend since I moved here more than 30 years ago. There's my good friend Vince who I see and speak to regularly. He is a lot like me, has a great sense of humor, and brightens my days often. And where would I be without my best friend…. Trrrrr? That’s Terry for those of you who don’t know us well. Not only does she give me daily quality of life, she also makes the special occasions special. When people come to visit, my suggestion that we keep it simple and order pizzas doesn’t cut it. Terry prepares a nice dinner, even baking the dessert, not to mention the cleaning before and after. She has contributed special dishes when it’s my turn to host the poker game. In a couple of weeks she’ll host a birthday party for Linda. She goes out of her way to make these occasions enjoyable for me. I’m going to keep suggesting the pizza because I’d like more people to come visit and I don’t want to burden Trrrrr but I probably won’t win out. Cherish your friends. I do. ----------------------------------------------------------------
Wednesday, June 10, 2009
As I write this I am on the pump. Yesterday was the big chemo day. Tomorrow is hydration and “get off the pump” day. Then two whole weeks off!!! This begins the three week cycles for a while, an attempt to balance life and quality of life. By the way, “quality of life” is one of two terms/phrases that I (and I suspect many other cancer patients) hate to hear. The other one is “palliative”. Yesterday Dr. George discussed a new drug that may be useful in my treatment. I had read about it earlier but didn’t pay too much attention to it because it’s use for esophageal cancer is experimental. It’s called Herceptin and has proven to be effective in the treatment of breast cancer, but only in tumors that contain a gene called the HER2 gene. It is approved by the FDA for that use. Recent studies indicate that it may also be effective in treating gastro intestinal cancers that test positive for the HER2 gene. So Dr. George ordered my previous biopsy sample to be tested for the HER2 gene. If the gene is present, and I think it has to be abundantly present, Herceptin may be helpful. It is not a miracle drug. Dr. George just wants to know if it is something available to us down the road if we need it. It would be another weapon in the arsenal. And that’s assuming the insurance company would pay for it because its use in gastro intestinal cancer treatment is considered “off label” since it is not yet approved for that purpose. One of the major attractions of this drug is that there a very few side effects because it is an anti-body. The big drawback is that if I used it I would grow breasts. Just kidding about that last part. I am pleased to announce that I am involved in a clinical trial. As a matter of fact I am conducting the trial myself. It is a phase I trial designed to determine the affects of 5FU on mosquitoes and gnats. I sit outside and let the bugs swarm around me yelling “go ahead, make my day”. After they bite I try to keep an eye on them to see how long they survive, counting the seconds….. 1, 2, 3, 4, 5, FU!!! I’m just trying to do my part for science. Carry on. ----------------------------------------------------