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, September 30, 2010

This and That .... And It's Coming From Me

My last post generated some curiosity about what my profession was so here’s the story. Trrrr says I ramble on too much and this is a good example. But there are other topics following this novel so there’s light at the end of the tunnel if you get through it. My father started a school for training real estate and insurance agents to pass the licensing exam. I worked for my father throughout my teen years. When I was a freshman in college, certain needs at the school and my desire to make that my career, resulted in my decision to discontinue my education and work there full time. My father passed away in 1979 and my brother Tim and I took over the business. Over the years I became knowledgeable enough in both fields to become licensed as both a practitioner and a teacher. Bear in mind however that passing a licensing exam, or teaching someone to do that, requires a theoretical knowledge of the subject, not a practical knowledge. In 2004 I sold my interest to Tim. The class I taught primarily was Title Insurance which involves a combination of real estate and insurance. In 1998 I had a student in class named Terry. Terry had been a legal secretary/paralegal for many years and was in the process of starting her own business providing legal support to attorneys. She needed her title insurance license in order to work independently doing real estate closings. Thanks to the expert instruction she received she passed her licensing exam. Terry approached me about teaching a course on how to do real estate closings and together we developed one that was offered and well received. Shortly before meeting Terry I had begun doing real estate closings on the side because I needed the money. The school business goes up and down with the real estate market and it wasn’t doing well then. I had also just gone through a divorce so money was tight. I was working with another licensee by the name of Carol Heiman so we were the closing team of Heiman and Wyman. I did not like working with Carol so when the opportunity to work with Terry came up I went with it. We became the closing team of Terry and Jerry. I try to make it a point to work only with people I rhyme with. Terry and I started a business practicing title insurance, specializing in real estate closings. Her practical knowledge and my theoretical knowledge complimented each other and eventually got to the point that they melded. I dedicated all of my working time to that business after divesting myself of my interest in the school. You may curious and the answer is yes. This is the Terry I eventually married. It was one of the best decisions I made in my life and one the worst she has made. Sorry that dragged on so much but I didn’t know how to abbreviate it. Now on to some other topics. In my last post I told you that Robbie LaSalle was at a turning point in his treatment. Rob is the patient who has two forms of cancer, adenocarcinoma in the esophagus (like me) and small cell cancer in the same place (very unusual). Rob was forced to change treatment centers because of insurance considerations and the new center is completely reevaluating his situation. He will likely soon began a new treatment plan. His wife Becky maintains a blog and she recently conveyed what the new doctor said. Keep in mind that my doctor avoids mentioning statistics and prognoses. Rob’s new doctor obviously does not. The following is from Becky’s blog. He explained to us that esophageal adenocarcinoma is ONLY curable with surgery. Without surgery there is a 99.9% mortality rate. So he wants to see if Rob is a candidate for surgery. We told him that we had been told that because of the small cell cancer Rob was not a surgical candidate. He said that is why they want to be SURE that he had small cell in the first place. He said that small cell cancer aside... if we don't do the surgery... Rob will live the rest of his live on some kind of chemo and eventually the cancer will become "chemo resistant". So you see just how difficult this disease is to beat. Yes, I know that’s a little negative and somewhat depressing but it is what it is. On a slightly more positive note, emphasis on slightly. I heard back from the assistant to Dr. Nosher, the doctor who did the SIR Spheres. Dr. Nosher said that one side of my liver obviously responded better than the other. We should wait three months, reevaluate, and then there’s a chance one side could be retreated. I’ve asked for some clarification and for him to call Dr. George as Dr. George requested it. Lastly, some people have expressed concern that my recent posts are depressing. I’m sorry for that. But keep in mind that this is a blog about a very unpleasant situation, Some of the things I say are bound to be unpleasant. You’re hearing from a person who is fighting a battle and facing death. I have feelings about all of it and I express those feelings. Most of the blogs out there are written by a caregiver. Mine is one of a very few where people can hear what it’s like for someone actually in that situation. I hope someday that helps another patient. In the meantime, let me assure you that I have no reason to think my death is near. I have no thoughts of giving up the battle. My fight and my will to survive are as strong as ever. With your prayers we will see the miracle I told you long ago you might get to witness. In fact, it’s been so long that I’m getting close to declaring it a miracle. Please pray for Rob too. Carry on. ----------------------------------------------------

Monday, September 27, 2010

I'm An Old Man

I never finished college. I cut that short to continue a career I had already begun. I began my career at an early age. That decision worked out OK for me. I got married at a fairly early age, 21. I bought a house before that at age 20. My first child was born when I was only 24. Some people retire from a profession in their fifties or sixties. Some then go on to teach their profession. I retired from a profession involving teaching at age 49. I then went on to practice in the profession I taught. I’m not working now. I am receiving social security benefits (disability). I am living in retirement at age 54. The point is that my life has been somewhat accelerated. And I think I know why. I have very little energy these days. My physical activity is very limited. I have loss of hearing and chemo brain that sometimes resembles senility. After any limited activity I have aches and pains. I've lost most of my hair and otherwise look like I'm in my sixties or seventies. These things are all related to my disease or it’s treatment but nonetheless I feel like an old man. Chances are my lifetime will be shorter than most. But it won’t be any less fulfilling or rewarding. Just accelerated. Please pray for Robbie LaSalle. He’s at a turning point n his treatments. Carry on. ------------------------------------------

Wednesday, September 22, 2010

Quick Update

I received the results from the blood tests drawn on Monday. My CEA count is still creeping up. It’s now 28.7, up from 25.1 two weeks ago. However, the counts that measure liver function have improved slightly. I’m concerned about the liver tumor that, according to the PET scan, has grown. I expected that the SIR Spheres would have taken care of all the liver tumors. Although one of them was resolved (disappeared), I don’t understand why the other one is thriving. I sent the scans down to the doctor who did the SIR Spheres but unfortunately he’s away until next Wednesday. It’s frustrating but I can’t complain. I’m lucky to be here and I’m loving life. Carry on. ------------------------------------------------

Friday, September 17, 2010

Sorry If I Misled You

I’m afraid my last post left an impression that I did not intend. I think it came across as being negative, even giving some people the impression that I was depressed, perhaps giving up. Not at all. Yes, I definitely have some times when I am depressed. I can’t help it. But for now, and most of the time, I am determined. And I’m loving every day that I have. To me, the key points of what I was trying to say was that I’m very happy to have outlived my prognosis and the past two years have been among the best in my life. Yes, I wrote about indications that the end may not be far off but there are two things about that which are very important. First, I want to be able to recognize when the end is approaching. I am fortunate that I was not killed suddenly, depriving me of the opportunity to finish some things here on earth. Secondly, when the time comes I am ready. I am not afraid. I am at peace. For those of you that were concerned, those who left comments, and those who sent private emails, thank you. But please don’t worry about me. Next week I see the Chemo Kaiser again and I hope to have good news to report. If it’s not good I’ll figure out what to do next and keep fighting. Please, if you can, listen to the song in the background. It expresses how I’m feeling. Here are the lyrics to the first and last verses. May I suggest May I suggest to you May I suggest this is the best part of your life May I suggest This time is blessed for you This time is blessed and shining almost blinding bright Just turn your head And you'll begin to see The thousand reasons that were just beyond your sight The reasons why Why I suggest to you Why I suggest this is the best part of your life This is a song Comes from the west to you Comes from the west, comes from the slowly setting sun With a request With a request of you To see how very short the endless days will run And when they're gone And when the dark descends Oh we'd give anything for one more hour of light I would give anything for one more hour of light, including continuing the battle against this beast. Be happy everyone. Carry on. ------------------------------------------

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Thursday, September 16, 2010

Sweet/Bitter/Sweet

Today it is the two year anniversary of my diagnosis. I can honestly say I didn’t think I would make it past one year. I have outlived my prognosis and for that I am very grateful. That is sweet. I “celebrated” the day the same as I did last year, by going to Mass, visiting the folks at my oncologist’s office to express my gratitude, visiting my mother to do the same, and of course letting Trrrr know how important she is to me. Unfortunately I was delayed somewhat because when I went to the oncologist’s office the Chemo Kaiser locked the doors and tried to force an early treatment on me. I had to pull the fire alarm to get out of there. The bitter side of this day is that although I’m happy to be at this point, I can’t help but feel like my remaining time is very limited. My last two chemo treatments were three weeks apart instead of the normal two. This was because a minimum of two weeks is required before the PET scan can be done and the scheduling just worked out that way. With the extra week off my CEA count went up from 20.7 to 25.1. So it seems I’m very dependent on the chemo. After the most recent treatment I had more gastric discomfort than normally. I vomited for the first time in two years of treatment. I’ve also been more fatigued than in the past. So it seems the cumulative effects of the chemo are getting worse. I fear that am nearing the time when I can’t live with it and I can’t live without it. Something has to give. More than medically, I am feeling spiritually that I am getting close to the end. I’ve spoken before about the learning process I think people go through at the end. More and more, I think I’m reaching that point of understanding, accepting, loving and forgiving. I really think I’m a better person than I was two years ago. I’ve sometimes wondered, as I know others have, why do good people die? What’s the point in going through this learning process, often late in life, only to leave this life. Well I think the answer is obvious. Where are good people supposed to go? They’re supposed to go to heaven. Lately I’ve been feeling the presence of people who have gone before me. They may be here to guide me. They may have been here for years and I never felt them before. But I think they may be preparing to escort me. Back to the sweet side. These past two years have definitely been among the best in my life. So much has happened and I’ve felt so much love that it’s all too numerable to mention. But what stands out most is my children. I don’t think I’ll get to see Heather get her dream job as I put on my bucket list but I have gotten to see her happy. Very happy. And that makes me feel very good. And then there’s AJ. I’ve always been proud of AJ but it was usually associated with watching him play sports. However that pride doesn’t come close to how proud I am of what he has done with his career and the man he has become. I don’t want to leave yet. In fact sometimes I think I’ll miss myself. But when my time comes I’m ready. Spiritually ready. I have a few mortal things I have to finish and I’ll be working on those. In the meantime every day is another gift. Happy anniversary everyone. --------------------------------------------------------------

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Sunday, September 12, 2010

Rolinda

More than a year ago I received an email from Rolinda. She told me of her father Richard Martin who had died from esophageal cancer on the very day I was getting the ultrasound scan that led to my diagnosis. Since then I’ve felt a connection to Richard. It’s as if he handed off the baton to me and now I must continue the battle. Today is the second anniversary of Richard’s death. But for me, today is about Rolinda. Rolinda is Richard’s legacy. She has carried on his battle by supporting others. Rolinda follows my journey and periodically I’ll receive an email from her that usually expresses support or encouragement. Occasionally she’ll tell me what’s going on in her life or something funny that happened to her. I always enjoy hearing from her. Richard would be pleased and proud to know that his daughter is honoring him by remembering what he went through and trying to ease that burden for someone else. Actually, I believe he does know. I have felt Richard’s presence in my life and I’m sure Rolinda does too. I hope she feels it in a very strong, positive way today. Thank you Rolinda. Thank you Richard. --------------------------------------------------------------

Tuesday, September 7, 2010

OK is OK

My PET scan results showed that all of the tumors in my lungs show "no metabolic activity" which means they're dead. This is how they were on the last scan. One of them increaed it size slightly. I asked Dr. George how it could increase in size if it was dead and she said it was probably just a matter of who read the scan, estimating the size differently than the last radiologist. The report emphasized however that "malignancy cannot be ruled out". The liver, which had been bombarded by SIR Sphere radiation showed perplexing results. One tumor that was present last time has been "resolved". Dr. George said that means it's gone. However a second liver tumor has grown slightly and it's metabolic activity has increased. I need to get a disk of the scan images down the the Dr. who did the SIR Sphere treatment to see what he days about that. The bottom line is that the liver still seems to be the only place there are active tumors. So the report was not great but not bad. It was just "OK". I guess that's what my comrades meant when they said "It's going to be OK". Or maybe they weren't even talking about the scan. I have to learn to listen better. Carry on. ----------------------------------------

Monday, September 6, 2010

It's Going To Be OK

Last Wednesday I had a PET scan, the first one since my SIR Spheres treatment. It was a very unusual experience. During the entire three hours I was at the hospital I felt very detached from it, as if I wasn’t supposed to be there. Normally it is a very boring process, especially the time spent in the actual scanning machine. This time I was very relaxed and at peace and the time passed easily. Believe it or not, I felt the presence of Richard Martin, John Hawker, Travis Poll and Larry Alvey, EC patients who have gone before me and have inspired me throughout. I could also feel my father although he was not actively participating. It was like he had escorted the others to me or was just watching what was going on. My fallen comrades kept saying “It’s going to be OK. It’s going to be OK”. I don’t know if they were referring to the scan results or if they were telling me that it’s OK on the other side. These guys really know how to cover their butts don’t they? Either way it was very comforting. As I said I had the distinct feeling that I didn’t belong there. I was going through the motions because it’s important for the doctors to know what things look like, particularly the doctors who did the SIR Spheres who need data. I’ve had no scanxiety. Tomorrow I’ll get the results. I’m hopeful, but whatever they are I’m ready. I am at peace. It’s going to be OK. -------------------------------------------------