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.
Saturday, March 28, 2009
I read everything I can find on the internet about my disease. I have pretty much garnered all of the knowledge I can from the information sites. I stopped reading those a long time ago but keep an eye on them in case there are any new developments. What I read a lot of now are blogs and bulletin boards where patients, caregivers or loved ones write about their ordeal. I have come to realize that I am one of the lucky ones. Here’s some of the problems that esophageal cancer patients go through that I have been spared. Although stage 4 patients usually don’t have the option, stage 1, 2 and 3 patients often undergo surgery. Some choose not to, and there’s good reasons why. It is extremely radical surgery. The procedure obviously involves removing some or all of the esophagus. Then the stomach has to be pulled up, between the lungs, and reconnected to what remains of the esophagus. This is very painful and the pain never goes away for some people. Often some or all of the stomach is also removed. The patient is then left with a partial stomach or no stomach at all. Eating is never the same after that. It never returns to normal. Only very limited amounts can be eaten. Many foods cannot be tolerated. There can be frequent “dumping” of the stomach contents. There can be leaks where the stomach and esophagus are rejoined. Often the patient cannot sleep in a reclined position because of reflux. Post-op recovery usually requires weeks in the hospital. Surgery patients usually require chemotherapy and/or radiation in addition to the surgery so they suffer through that as well. I have read about many patients who go through all of this and then die. Many patients have a tumor that obstructs the esophagus making swallowing very difficult if not impossible. They can’t eat. Some undergo a dilation procedure to stretch the esophagus. Some must have a stent implanted to keep it stretched out. For others it is worse and they must have a feeding tube implanted. The tube goes through the abdomen into the stomach or the intestine. Nourishment is then obtained through liquids. A feeding tube is also frequently used for the surgery patients whose new digestive system doesn’t tolerate swallowed foods. For some, the tube is temporary. For some it is permanent. Some patients develop neuropathy from chemotherapy. This is a nerve condition results in tingling, cold sensations and pain in the extremities. Some patients have such a bad reaction to chemotherapy that they must stop. I have been fortunate enough to avoid everything above but it’s important that anyone facing this disease knows where I’m coming from. If I had to make a decision about any kind of treatment I would probably choose to go through with it, even knowing how difficult it would be. You have to fight this with every weapon available. I’m just thankful it hasn’t been as tough on me as it has been on some people. Please pray for all of those patients who have not been as fortunate as me. Not much to report medically except that my blood test shows that my liver is hanging in there. I love my liver. The last treatment I had began on Monday, March 16th. Normally I would start another round on Monday, March 30th, but not this time!!! I’ll be taking an extra week off from chemo, hopefully to keep the cancer from getting “smart” (developing a resistance to the chemo) and to build some strength. I’m anxious to see how I feel with the extra time off. Life is good. So we carry on. ------------------------------------
Wednesday, March 18, 2009
Saturday, March 14, 2009
I’m not sure if I have written about this before but several days after my first chemo treatment I experienced severe hiccups. At first I thought it was an after effect of the anesthesia from surgery I had just undergone to implant the portacath. Since then I have experienced hiccups several more times after treatment so it was probably not from the anesthesia. Anyway, I hate hiccups. I always did. They hurt me. And these hiccups were relentless. They ended up lasting about four days and I was really suffering from them. On the third night they were so bad that I couldn’t fall asleep. I had gotten very little sleep the previous couple of nights, I was hurting from the hiccups, hurting from the surgery, and feeling the effects of the chemo treatment. I was still feeling the symptoms I had before starting treatment. I have said that I don’t think it is right to pray for one’s self and I believe that. But I was feeling so bad I violated my own belief and I asked God to help me fall asleep. I needed relief. I don’t want this to sound like I had a vision. I did not. But I did form an image in my own mind, intentionally. I imagined my father walking toward me. He was being escorted by Jesus who was holding his hand. Jesus brought my father to me. My father sat down. I laid down and put my head in my father’s lap as he held me. I fell asleep; for real. Relief. I should mention that I don’t remember ever being held or hugged by my father. He didn’t openly express his emotions and hugging between two men was not as common as it is today. So this image was very comforting to me. As I said this was an image that I concocted myself but I do believe that God helped put the image in my mind. It was as if God was sending His son to bring my father to his son, who needed him very badly. Last night I had a dream. I dreamt that I was climbing stairs. I kept climbing and climbing, going up higher and higher. When I got to the top my father was standing there. We hugged. That hug felt so good it seemed real to me. There is a lot of symbolism here. I ascended to a place where my father was waiting for me. I feel like hugging my son. ------------------------------------------
Monday, March 9, 2009
What a weekend! On Saturday morning I went to let our dog Oscar outside as normal. But on this day something seemed to be beckoning me out there so I stepped out onto the patio. What a gorgeous day it was. It had to be close to 70 degrees. The sun was flooding the yard. I love a nice warm sun. I sat out there for a while just soaking it all in. I looked around the yard at the buds on the trees, the shrubs that would soon need my attention, a cherry tree that Terry and I planted last year that seems to have survived its first winter, and a nice big planter I built several years ago that is now waiting for my mother and I to fill it with marigolds. It was September-October last year when I was diagnosed and began treatments. Not only was the warm weather disappearing but I was in no condition to enjoy what little was left. Frankly, I didn’t think I was going to be given a chance to enjoy it again. This was the first time I was absorbing the sun in what seems like a long, long time. So as I sat there bathing in this gift from God I really appreciated being alive and looked forward to the spring and summer. Later that day we were visited by my old friend Bruce and his wife Rhonda. Bruce and I were very close more than 25 years ago but drifted apart as often happens when lives take different turns. By the way, when I refer to Bruce as an “old” friend I mean it in both senses of the word. Holy crap Bruce you make me feel young. But he is in much better shape than me so kudos to him. Bruce and I talked like we had never left off. He brought pictures of his kids (and grand kids) who are now adults with careers and families of their own. I remember them as little children running around my house or Bruce’s as we and our wives were playing Hearts or Bruce and I were battling out a game of Chess or Mastermind. Bruce and I are both remarried now but I think the four of us connected nicely. Bruce and Rhonda are both retired now and both doing volunteer work. Rhonda is a hospice volunteer which makes her a very special person. I had to question Terry to make sure this wasn’t her way of sneaking hospice in for me. They brought lunch and made it a great day. On Sunday we were again visited by our friend Charles from Toronto. Charles and I go back a good 20 years. Charles was clever enough to recruit me to “help” him run the bingo program at our children’s school and then promptly moved to Canada leaving me to run bingo alone. Do you think I was set up? Charles is a compassionate intellectual with excellent social skills. This makes for great conversation and very enjoyable interaction. He is one of the finest men I know and his visit capped off the beautiful weekend. There’s not much to report medically. Last week I had my 10th chemo treatment along with the accompanying blood tests. The blood test results show that my liver is hanging in there and I’m still tolerating the treatments reasonably well . Next Monday I will get my 11th treatment and then I’m going to take an extra week off from chemo. Terry and I are going to take a short trip in that third week when I hope to be feeling better from the time off. Weekends like this last one make it very easy to carry on. So we do.