ginnyde Posted June 5, 2004 Posted June 5, 2004 I am going to tell this story over time. I am not sure I have the emotional stamina to do it all at once. Earl is a tall, blond (natural of course) with the most beautiful watery blue eyes. The twinkle in those eyes makes my heart melt. We are a second marriage. We each have two children from our first marriages. We have been married over 25 years and in most ways the families have blended very well. Earl went into the Air Force after high school and was involved in radar. (Don't ask me, I don't understand it). This was during VietNam but he stayed stateside the whole 4 years with most of it at Pease AFB in New Hampshire. Earl loved his time in the AF and tells wonderful stories. After the AF, Earl went to IBM as a customer engineer, these are the guys that fixed computers, big computers, at the time when computers were fixed, not thrown away. When Earl thought that the fun of fixing computers was over (the diagnosis of the problem etc etc) we switched careers within IBM becoming a systems engineer. He absolutely adored this job. In 1981, IBM wanted to transfer Earl. He wanted to stay in this area. So, we decided to start our own company. I am also a computer programmer/analyst and was working for IBM as a marketing rep at the time. The plan was that I would stay with IBM for a year. Fortunately, the company took wings and I joined in less than 6 months. The company has been Earl's life. He really has no hobbies - not a golfer, a hunter, a fisherman. He did like to putter. His customer's adored him, he is so smart and committed to them. He has always believed that you need to do the right thing - that a clear conscience is the only way. In the mid 90's, the economy went south and we downsized, moving the business back into our home and laying off our employees. This was the toughest thing for Earl. But fortunately, there has always been enough business to keep us busy and eating. In 2000, we started doing some of the things we had always dreamed of. First we went to London and Paris for 2 weeks. We ate, drank and walked our feet off and had a wonderful time. In 2002 we started planning a trip to Italy with dear friends. In June 2002, Earl and I both quit smoking cold turkey. Earl used the patch. But we never had another cigarette and were surprised that the quit was not more difficult. We had both been smoking over 40 years. September 2002, off to Italy for 2 weeks with another couple, our best friends. We had such fun, but boy was it tiring - it was one of those if it's Tuesday it must be Florence type trips. Home on 9/20. 9/21 we are off to Atlantic City for a surprise birthday party. Earl had awaken that day and said he was exhausted and thought he was getting a cold, coughing alot. Stuffed himself with Sudafed and said he wanted to go to AC, but would I please drive, very unusual for him. Our world turned upside down. Right before dinner at the party, Earl said he just felt crappy and was going up to our room to lie down for a little while (I'm thinking it's his cold). I go up about 45 minutes later to check on him. As soon as I opened the door I knew something was wrong. He was snoring like I had never heard him before and he was lying in a very strange position. When I tried to wake him up, he didn't rouse. This was the beginning. EMT's all over the place, he started having seizures. Thank God my children were in the hotel and were there quickly. He was taken to AC Medical Center only about a block from the TajMahal. After the many tests in the ER, they tell me that he has 'something' in his brain above his right ear. They are not sure if it is an abscess or a tumor. They also had to do an emergency trach, he was on a vent and they were keeping him in a drug induced coma. He was in ICU at AC for 7 days. During this time we found out he had 'something' in his upper right lobe. But no definitive dx. After a week in AC, he was airlifted to the University of Penn hospital to the neuro ICU. I had heard that Dr. Kevin Judy was the best dr. to remove the brain tumor and, thank God, he accepted Earl. The surgery was on 10/4/02. It went very quickly, the tumor was encapsulated (good) and it was definitely lung cancer. At that time I had no idea what questions to ask and they didn't offer a lot of info. The neurosurgeon suggested whole brain radiation, so of course we did it. You just did what they said. At this point, we knew that the next step was lung surgery but we had some time to get a second opinion. We met with the thoracic surgeon at Penn and with Dr. Melvyn Goldberg at Fox Chase Cancer Center. Both drs. offered the exact same recommendation and both scheduled surgery for 12/3/02. Earl made the decision to go to Fox Chase. When I called Penn to cancel the surgery, the admin said 'Oops, we forgot to schedule that surgery'. So obviously we feel that Earl made the right decision. They told us they were going to do a medianoscopy first to check for lymph node involvement and if there was the surgery would not continue. Well, the surgery continued, we were ecstatic. About 3 months later we found out that there was indeed lymph node involvement, so I really don't know why they continued with the surgery. So Earl had 33 radiation treatments to the high middle of his chest. He was very fortunate that he did not get any esophagial burn. He took Carafat before and after each treatment and on the weekends and I think this really helped. However, most food tasted very metallic. He lived on creamed chip beef and Ensure Plus/ice cream shakes. I became a food nazi, but he did lose way too much weight. After the radiation, he had 3 taxotere treatments, which he tolerated very well. Earl then had a several month vacation from treatments. He started to feel better, life began to return a little bit to normal, he even worked a few days here and there. Optimism was high, he could be one of the people that do survive Stage IV. Late September, a clean brain MRI, high fives all around. Early October - BAM - multiple tumors in the liver. It has been downhill since then. First he had 4 rounds of carbo/taxol which almost did him in. No significant side effects just overwhelming weakness and fatigue. So off to Iressa in January, side effects 'very interesting' but bearable if it is working, but he never got that burst of energy that others have mentioned. In fact, he is getting weaker and weaker. Mid April, another brain MRI. Doctor never calls with results until I call him two weeks later because Earl is so weak. Oops, the Dr. says, there are multiple mm size brain tumors, the Iressa isn't working. So now he puts Earl on Temodar, a brain cancer chemo in pill form that can cross the blood brain barrier. To be continued. Quote
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