Don't Worry About It

I’ve said before, as have many people, that when you’re in a situation like mine you look at things differently. This is certainly true about serious things like how you value loved ones and how you view faith. But it’s also true when it comes to less important things. And sometimes you can laugh at things you may not have before being in this situation. A good example was Jim Valvano, former basketball coach for North Carolina State University. In 1993, just eight weeks before he died of bone cancer, he gave a speech at the ESPY Award presentations. It was a very passionate, poignant speech in which he was talking not only about his career, but also about his battle with cancer. After a while someone from the production crew in the back of the audience started frantically signaling him that he had only 30 seconds left. Valvano said “That screen is flashing up there thirty seconds like I care about that screen right now, huh? I got tumors all over my body. I'm worried about some guy in the back going thirty seconds? You got a lot, hey va fa a napoli, buddy. You got a lot…” In other words some things are just not as important as they once were. You don’t sweat the small stuff. You gotta FUGETABOUTIT. Like Jimmy V, I don’t know how much time I have left so there’s a lot of things I can just FUGETABOUT. Here’s a few examples. In order to lessen the amount of typing and be as brief as possible I’ll just abbreviate FUGETABOUT with the shortened version FUG.

• For a while I was a little self conscious about going out in public with the visible side effects of chemo like eyes constantly tearing, nose dripping or simply wearing the infusion pump. Now I just say FUG it, I don’t care.

• We’re all told that in order to lead long healthy lives we need to have good eating habits. Heck, much of the time I don’t feel like eating anything so if I see something I want, regardless of its nutritional value…. FUG it. I’m eating it.
• Long term financial planning ???? For me long term is about three months. Seems to me the only financial plan that would work in that time frame is to buy lottery tickets. FUG it.
• Sometimes when I go outside to work I’m warned to put a hat on or wear sunscreen. Sunscreen? Why? I’ve got life threatening tumor inside of me and I’m gonna worry about a possible mole on my skin? FUG it.
• I used to worry about the political environment and the direction our country is headed in. But now I realize that no matter how bad it may be, this country is not going down for at least another 10 years. Ten years???? I don’t think that will affect me. FUG it.
• Recently I’ve been warned that having paracentesis (draining the abdominal fluid) runs the risk of infection. Are you kidding me? Have you seen my chart? This fluid is causing me difficulty eating, breathing and walking. My body is riddled with cancer. My liver is not working well. Do you really think I’m concerned about a booboo on my belly? FUG it, do the procedure.

Carry on.

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Merry Christmas

This morning I made a point to kneel down and talk to my comrades who have gone before me as a result of this disease. I thought about Travis Beus, Richard Martin, John Hawker, Travis Poll and Larry Alvey. I thought about things I know about each of them so I could relate to them individually and then I talked to them as a group. I wish I could say that I got a response but I didn’t. I think they were busy celebrating a birthday. Personally, I had a great Christmas eve and Christmas day. I hope you all did as well. Carry on. -----------------------

Terry Knows Best

I started to feel a little better Sunday night and it continued yesterday. I was beginning to think that maybe my discomfort was being caused more by the chemo than the ascites and now the chemo was wearing off. But Terry urged me to set up the paracentesis pointing out that Christmas was coming and I would not want it to get worse and not be able to have it done. Boy was she right! Yesterday I got the paracentesis scheduled for today. As the day went on yesterday I began to feel the effects of the fluid more and more but it was manifesting itself as leg pain and shortness of breath rather than the gastric discomfort I felt over the weekend. Today the procedure was done and they removed 5 liters of fluid, one more than three weeks ago. And now I feel great. It's amazing what a difference it makes. Thanks Trrrr. I'm hoping the test results again show no malignancies in the fluid. I have a theory that the chemo agent epirubicin, perhaps in conjunction with the herceptin which we discontinued, is causing my heart not to pump propery. That's really not theoretical becuase we know that from the MUGA test. The theoretical part is that it is my heart not pumping correctly that may be causing the ascites. So I'm going to schedule an appointment with Dr. George to suggest we discontinue the Epirubicin now. CEA counts show it's not working anyway. There are two more chemo regimens I'm familiar with we haven't tried yet and I'd like to give her time to consider them and set them up. And then maybe we can get the ascites to stop. The PET scan next week will come at a perfect time for a baseline if we make a change. Maybe this is all wishful thinking but you gotta have hope. And you gotta carry on. --------------------------------------

Tired, Inspired

This disease seems to either kill you fairly quickly or wear you down little by little. It’s beginning to wear me down. When I went for my forty-third chemo treatment and the accompanying blood test this week several things were revealed. First, Dr. George informed me that the MUGA test I had last week showed that there has been some damage to my heart. It is reversible, but only upon stopping the agent that is causing it. So Dr. George cut out the Herceptin, one of two drugs I’m currently taking that causes the damage. Looks like another example of “if the disease doesn’t get you the treatment will”. The blood test showed that my CEA count continues to rise. It’s now at 202.9 compared to 149 three weeks earlier. Apparently this chemo regimen isn’t working. Dr. George ordered another PET scan. I think she knows the treatment is not working and would have changed it by now if she had another idea. We’re running out of options. Since I had the paracentesis to drain the abdominal fluid less than three weeks ago I have felt that the fluid is returning. Over the last two days it has really hit hard. It has become extremely uncomfortable and it’s difficult to eat. I think I need to have the procedure done again. So now, instead of having two free weeks between treatments I’ll probably have paracentesis one of the weeks and a PET scan the other. I’m getting very frustrated and tired of all the doctors, hospitals, procedures and discomfort. I know this is all a bummer and frankly I had been feeling rather depressed. But As I sat down to write this blog entry I opened an email I just received from Diana. Her husband Frank was diagnosed in May 2009. Diana gave me a brief history of all they’ve been through and how hard Frank is fighting. Their story, along with a couple of well timed hugs from Trrrr, has inspired me. I’m ready to carry on. -------------------------------------------

Friends

Friday evening my friend Joe dropped by for a visit. He spent time with Terry and I just chatting. What was originally going to be an evening like most others tuned out to be some enjoyable time spent with a long time friend. On Saturday my friend Vince came over to help me put up our Christmas wreath. You may wonder why I needed help with a wreath. Well this is an eight foot wreath which I built about five years ago along with a ten foot easel to stand it on. I've put it up myself once, with Terry once and with my son several times but this year I was ready to retire it. Then Vince offered to help and I couldn't resist because I like it. Below is a picture of it. I replace the normal white ground lights with green and red bulbs. They can't be seen clearly in the picture although they are visible. I also use green and red spotlights shining on the house to backlight everything. Getting the wreath up and having good friends has put me in the Christmas spirit. Carry on. -----------------------------------

The Box, Four Years From Now

Some time ago I started thinking about things I want to say to people and things I want them to have after I’m gone. I decided to start putting these things together and writing letters to people. I started to gather things that are special to me that I want buried with me. All of these items were to be kept in a box to be opened after my death. As you might imagine putting these things together is not easy. I was procrastinating. Yet these things were on my mind and I felt an urgency to get them done. Terry picked up on this and went out and bought me a nice box. She pushed me to get it done and get it off my mind. She was right. The box is almost complete now and that has given me more peace of mind. Terry knows best. But I think the box will have to go into storage for a while. This week I have felt exceptionally good. I think it’s a combination of being two weeks beyond the last treatment, having the fluid drained from my abdomen and maybe even some healing. The week began on Sunday with a family celebration of Gianna’s birthday. Gianna is our niece Cheryl’s eight year old daughter. Terry’s family has been my second family for almost twelve years and in many respects they have been my primary family at times. Spending time with them is always rewarding. On Monday I went for my MUGA test, another radioactive scan, to make sure my heart is still functioning properly. I believe it specifically looks at the left ventricle which the chemo I’m presently on may damage. Hopefully I’ll get the OK to continue. Yesterday I went to the relatively new Mount Airy Casino in the Poconos. I played poker for 9 or 10 hours straight. I really enjoy poker and spending the day doing that took my mind off everything else. And I won some money which always makes it even more fun. Today I had the pleasure of visiting the NJ Division of Motor Vehicles again, this time to renew my license which apparently cannot be done through the mail any more. I won’t go into detail about just how pleasurable it was. The important thing is that I was there for about two hours. An hour and a half of that was spent standing in line. And I did it! I actually had no problem with it. My stamina was way up there. So now I’m looking forward to going back when my license expires again. In four years. I’ve been feeling so good that I feel compelled to go in next week and let the Chemo Kaiser knock me down again. I hesitate to say it but I’m expecting good news next week. Carry on. -------------------------------

Med Stuff

Last week I had chemo treatment number forty-two. The routine blood test was done and the results showed that my CEA count shot way up to 149 from 83.3 three weeks earlier. Not good. Dr. George said she wanted to see the results after three treatments of this regimen before making any changes. To make matters worse, the liver enzyme counts are creeping higher as well as one of the bilirubin readings. I think it will be my liver that ultimately kills me. From what I’ve read, death caused by liver failure is painless. Another example of how God has been watching over me throughout this ordeal. Throughout last week the ascites (fluid in the abdomen) was growing increasingly more uncomfortable. I was having difficulty eating which I attributed to pressure on my stomach. I was having intestinal discomfort which I thought might be from pressure on the intestines. I started having shortness of breath which was from pressure on my diaphragm although before I knew that I was afraid the tumor in my lung was getting worse. My legs were getting very weak which unbeknownst to me was also a symptom. I was feeling so bad I thought I was going to die and if I wasn’t I almost wished I would. It all culminated this past Monday when I had a sandwich and could eat nothing else all day. It was as if my stomach was forcing it back up. I decided to call Dr. George and ask her to arrange for paracentesis, the draining of the fluid. To my surprise, she was able to set it up for the very next morning. So Terry and I went to the hospital on Tuesday. After getting as far as laying on the table and having the preliminary ultrasound pictures taken, the technician asked me if I had a blood coagulation test done. Excuse me? Nobody had told me I needed a blood test. She asked if I had any blood tests recently and I told her I did last week. She asked if that included a coagulation test to which I responded I don’t know but I don’t think so. She said that if it didn’t we would have to reschedule the procedure. I asked her if there was some way we could do the test right there in the hospital. Either she is a very kind person or I am very charming because she called Dr. George and found out my blood was not tested for coagulation. She got Dr. George to fax over a prescription for the test, set it up with their lab and after waiting about two hours we were in business. Another God flyby. The procedure was interesting and only slightly uncomfortable. They put a catheter in the side of my stomach and let the fluid drain for about 20 minutes. Dr. George had ordered that 3-4 liters be drained. I asked the radiologist why they drain a specified amount rather than all of it. He explained that the fluid puts pressure on the blood vessels which constricts the flow of blood to the legs. Ah, that’s why my legs are weak. In order to compensate for the pressure on the vessels the body increases blood pressure. As the fluid is removed the blood pressure drops. If they took out all the fluid the blood pressure may drop seriously low. So they ended up taking 4 liters. The technician told me that equated to eight pounds. The fluid was sent out for testing. The results were that they could not find any malignancies which I suppose is good but I really don’t know how significant that is. Since the procedure I don’t have shortness of breath, I can eat and strength has returned in my legs. I’m glad I had it done. It may have to be done again depending on how quickly the fluid is accumulating but for now I’m much more comfortable. Next week I’ll have another MUGA test to be sure the chemo is not damaging my heart. I had a very nice lunch yesterday with my sister and bother in law. Tonight Terry and I will have dinner with my daughter and son and their significant others. Life is good. Carry on. ---------------------------------------------------------

Thanksgiving, 2010

Yesterday I went to Terry’s sister Jacki’s house for Thanksgiving dinner. We were joined by Terry’s other sister Camille and her husband Bob, and Terry’s niece Cheryl with her husband Dan and daughter Gianna. These people have been family to me for the past twelve years and spending the day with them was special. I was reminded of all the things I have to be thankful for. Earlier in the week I had received an invitation from my brother Tim to join him and his family. So after dinner I went to Tim’s house where he, his wife Kathi and daughter Lindsay were hosting a large gathering of Kathi’s family and ours. Although they did a great job, what really made this visit especially nice for me was that I had not been to their house in more than ten years. Tim and I have been slowly making progress towards mending our relationship but this was what I hope is then first step in repairing things with the rest of his family. Lindsay seems to have become quite a baker. She made an apple/blackberry pie and a pumpkin cheese cake. Everybody raved about them. Unfortunately I had to enjoy eating them vicariously because my taste buds are virtually nonexistent right now but I did enjoy seeing how much they were appreciated. Topping off the day was something I’ve been waiting a long time for, a group hug with my mother, sister, and brother. Below is a picture of the four of us but you can see the actual hug on my bucket list. Use the link on the right. So much to be thankful for. Carry on. --------------------------------------

Mixed Feelings

I’m experiencing conflicting spiritual feelings lately. I’m not talking about good vs. evil but rather what the messages I’m “hearing” mean. It’s very complicated so I’m not going to try to discuss that now. Instead I’ll discuss what I think are medical conflicts. I’m concerned about the fluid in my abdomen, a condition called ascites. I think it’s a bad sign. It’s also uncomfortable so I’ll talk to Dr. George tomorrow to explore doing something about it. On the other hand, I’ve been having more chemo side effects recently. The last time I had side effects like this the chemo worked well. I hope it means that this chemo regimen is working. I’ve been more tired and weak lately. This morning I said to Terry “My eyes and nose are flowing, and my hair is falling out again. Things are looking up!” I am well aware that the side effects a person experiences or doesn’t experience and to what degree has no scientific relation to the efficacy of the chemo. But I’m not a science experiment. I know that I got the best results when I had the most side effects. Dr. George said that it usually takes two treatments before you can judge the efficacy and tomorrow will be my second for this regimen. I’ll have to wait three weeks after that to see blood results. My plan is to enjoy the three weeks. Please continue the prayers for Robbie LaSalle. He is recovering from surgery, a very difficult process. He's a tropper, has a very supportive wife and his pathology results looked good. But it's very tough and will continue to be for a long time. Carry on. ------------------------------------------

Catching Up

In my last post I indicated that I knew a little bit more about my situation. On Monday I went to see Dr. Jabbour who is the radiologist who would have determined the dosage for the SIR Sphere treatment had that plan not been canceled. I wanted to see if she had any ideas. My daughter Heather was not working that day so she met me there to keep me company. It was great having her. We joked and laughed most of the time. She has an awesome sense of humor and the time flew. I didn’t want the doctor visit to end because the would mean I’d have to leave Heather. But I had another appointment back up north. At one point the doctor had me get up on the examining table and lay back. She said she was going to lift my shirt and asked me if I was OK with that with Heather in the room. I said yes. Then she asked Heather if she was OK. On the wall was a chart showing a diagram of the male prostate and reproductive system Heather pointed to the chart and said “As long as it doesn’t involve anything on that chart I’m OK.” Dr. Jabbour could offer no other options for me except to continue with chemo. I wanted to get her opinion on some things so I asked some direct questions. First I asked her if the fluid in my abdomen could be drained. She said yes but they prefer not to because it will come back and each time they drain there is the risk of infection. I asked her if the fluid was a sign that the end was getting closer. She said yes. Then I asked her how long she thought I had. She said probably not a year. She said that it’s not days because I looked too good (do you think she was hitting on me?). So she said probably months. At that point Heather said “Well I guess I’ll have to buy you a Christmas present”. Everyone laughed and after a brief pause she said “But I’ll keep the receipt.” Perhaps the most revealing indication of what Dr. Jabbour thought came at the end of the visit. She is a very quiet and reserved person whom I had seen only twice before, once for a pre-procedure check up before the spheres and once on the way into the procedure room. As we were leaving she came over to me, gave me a big hug and said “Good bye my friend”. We left and I headed to my appointment with Dr. George, my medical oncologist. What I was thinking about most was that I was sorry to be leaving Heather. I enjoyed her company so much. Dr. George was a little more hopeful. First, she said she would arrange to have the fluid drained whenever I wanted. We’ll wait for it to become more uncomfortable. Next she said that the new chemo regimen I started on November 1st (Epirubicin, 5fu but no Cisplatin) has had good results in Europe. It’s not used very often here. I had a “months” prognosis before and I lasted more than two years with Dr. George’s help. We’re going to try to do it again. On Saturday Terry and I went to our church’s Mass for the anointing of the sick. I’ve written before about what a moving service it is. There were four priests, each assisted by a deacon except for one who was assisted by a nun. Apparently there were not enough deacons available. When it came time for the anointing a priest and a deacon went to each person in attendance and prayed over them. Then they came back and anointed each one with the oils. Now try to appreciate the significance of this. I got the priest without the deacon but with the nun. The nun was my angel, Sr. Sylvia. If you don’t remember Sr. Sylvia’s role in my journey you can look back to my post of January 26, 2009 titled “A Miracle”. Later that day we had dinner guests and Terry, being Terry, went all out with the cooking and preparations. We were visited by our good friends Carol, Denis, Dina, Dina’s mother Barbara and Fr. Flanagan our former Pastor. I addition to having a good time Fr. Flanagan anointed me. That made twice in one day. Seems like a winner to me. Carry on. -----------------------------------------

It's All Right Now

I have found out a little more about my present situation but I don’t want to talk about that right now. The last time I posted I asked for your prayers that I have enough time to finish the things I need to finish. Those prayers, and thank you for them, have been answered. But as always they have been answered God’s way. He knows what’s best. The most important thing for me is to be sure, as sure as I can be, that my children are headed down the right path in life and that they believe and understand some things that I think I have learned. I have known for a while that my daughter Heather shares my values politically and economically. We have a similar sense of humor. Recently we had a discussion about death, Heaven, and the afterlife. We are in sync spiritually too. My biggest concern with Heather was that she be happy. I will never forget how happy she was on her wedding day and she’s still happy. I’m counting on that lasting forever, thanks to her husband Ed. My son AJ is tougher for me because he’s not easy to talk to and there is so much I want him to know. I have said it before and I think all my other loved ones understand when I say this. AJ has given me more joy in life than anyone. We spent countless days together as he was growing up and they always filled me with happiness and pride. AJ was always supportive of me, even when I was scolding or punishing him. AJ was all I had as an immediate family when I was going through the divorce with his mother. Friday night AJ sent me a letter which I will share with his permission. The first time I saw my father cry was when his friend Mr. Kahn died. I don't remember exactly when it was or how old I was. But I do remember him crying in the bathroom. I walked away and went up to my room completely baffled. Here was the strongest man in my life crying and looking so terribly helpless. I had no idea what to think or do. But I realized then that it was ok to cry, no matter who you were. I don't cry very often. And when I do, there is usually no one else around. I like to think that I can handle myself better in situations such as this. But the truth is, when I read my dad's blog, or when i see him struggle with things that used to be so easy for him, or when I think about life without him, I cry. And I cry hard. But I know it's ok. Because I saw my dad do it and he's the strongest person I know. I'm not one to talk about emotional things such as this with anyone. Whether it be my father, mother, sister, girlfriend. I don't know why, but I feel that sometimes I could talk to a stranger and tell him so much more than i could ever tell anyone in my life. Which is pretty much the motive for this email I am sending to my dad. I fear just as he does, just as my family does, that time may be running out on us. And this may be the only chance I get to tell him what he was to me. When I think of my dad, I remember many things. Soccer is my favorite memory. He drove me to hundreds of tournaments, miles and miles away, weekend after weekend. He showed up at high school games in the middle of his work day. He bought me the best gloves and cleats and shirts, and training that he could buy. And although he kicked a ball like a guy who's shoes were on backwards and eyes were closed, he always had the right advice for me. He was my best trainer. He was a much better baseball player. And I remember all the catches we would have in the front yard. It was a good time every time we went out there. Sometimes he would take me out only hours after yelling at and punishing me for some completely ridiculous thing i just did. It felt like it was his way of saying "Son, you're a moron for (insert dumbass thing I did here). But I still love you and you need to know that." My father always pressed my sister and I to study study study and get good grades. It worked for her but not so much me. She is the college graduate while I am still on Spring Break 2004. But nonetheless, he tried. He tried his ass off to get me to be a good student but I guess it just wasn't in me. But even when I missed baseball freshman year because of my grades and when i dropped out of East Stroudsburg, when I left County College, as disappointed as he was, he always reassured me that I would make it out ok. My mother may have been a bit more understanding in this department but it helped knowing that my father also had my back. My parents were good parents. Even though they didn't work well together and had two completely different parenting styles (like way way different), they were good. And I would never ask for any of them to be substituted. As difficult a son I was, I am a grateful one now. These past few years of been hard. I often find myself wondering if my dad will be at my wedding or meet my first kid. I doubted it many many times. But just as soon as I doubt it, he does or says something that makes me believe again. I have had bad feelings lately that maybe we are indeed running out of time. And I am just waiting for some good news. My dad took me to the cemetery the other day. He showed me where he will be buried, next to his father. I was ready to start crying. But I thought to myself, all those times my dad was the stronger one, I think I owe it to him to be the strong one now. I still can't look at him when he cries, it's just too hard. I have been diagnosed myself with Gastroesophogeal Reflux Disorder and I also have a hernia that I just found out about. It worries me knowing that pretty much everyone in my family has had or has cancer. I can't say I'm 100 percent in love with my chances of not getting it one day. The only thing I can say is that when my days are winding down, hopefully 100 years from now, I am as strong, as ready, and as understanding of the situation as my father is. My father is my hero. He always has been, always will be. He is the strongest most invincible person I know. He was my teacher, my coach, my critic, my partner, and my friend. And I will never forget him and all that he did to make me who I am. I don’t think I’ll ever finish everything I want to finish but it doesn’t matter. Knowing that Heather is happy and knowing that AJ appreciated all the times that were so special to me and that I had a positive influence on his life is enough. If God takes me tomorrow he will be taking me after having given me the greatest of gifts, my children. Carry on Heather. Carry on AJ. I love you. ----------------------------------

This Beast Is Fast

I held off writing this entry because is took me a while to deal with it. I thought I was preparing for another SIR Sphere treatment but on Wednesday the doctor who does it, having Tuesday’s CT scan in hand, called. He informed me that the treatment is now ruled out because of the risk/reward considerations. It seems the lesion/tumor in my lung is active again. Risking further liver damage is not wise because even if successful, the active cancer in the lung makes treating the liver rather useless. To further complicate things, the CT scan showed fluid in my abdomen which he suspects is coming from the liver. BAM. Things sure do change quickly. I still have an appointment Monday with the radiation oncologist who was to determine sphere dosage. I will keep that appointment just to see if she has any other ideas. Following that I have an appointment with my medical oncologist. I’ll see what she says, particularly about the fluid. I’m exploring clinical trials. Realistically, I think my only option is more chemo which hasn’t been working. If you are inclined to pray for me please pray that I have enough time left to finish the things I need to finish and that I have the strength to accept my fate and face it with courage. If you have only one prayer for now, let it be for Robbie LaSalle. He had his surgery and now faces a long, difficult recovery. Carry on. ----------------------------------------------------------

Busy Busy

The last couple of weeks have been busy with doctor appointments. And it’s not going to end for a while. It looks like I’m going to have another SIR Sphere treatment but I wanted to explore other possibilities first. The SIR Spheres may damage the liver and the procedure was not as effective as I had hoped the first time so I wanted to make sure there was not a better option out there. As I already reported I saw a radiologist about external beam radiation and he recommended that be left as the last option. Last week I saw Dr. Gannon, a surgeon, to discuss resection of the liver and radiofrequency ablation (RFA). He ruled out resection (surgically cutting the tumor out) because it would require that I be off chemo for an extended period. The surgery itself would weaken my immune system. He said that between the lack of chemo and the diminished immunity the cancer cells in my body would have an opportunity to run wild. He felt that surgery would shorten my life rather than extend it. Regarding the RFA he said it appeared from my most recent PET scan that the tumor was too large for that procedure. It’s hard to say for sure and he’ll know better when he sees the results of a CT scan which I’m having tomorrow. Dr. Gannon serves on a tumor board with Dr. Nosher, the interventional radiologist who does the SIR Spheres. He said they meet later this week and will discuss my case with the CT results in hand. Between the two of them, and I suppose anyone else on the board, they’ll decide the best approach. But it looks like it will be SIR Spheres. That of course depends on the tests I have to have done to make sure I’m fit for it, beginning with the CT scan tomorrow. I have an appointment early next week with the radiation oncologist who worked with Dr. Nosher on the last SIRT. She’s the one who determines dosage. She has to clear me for the next treatment. Today I started a new chemo regimen. It’s referred to as ECF which is epirubicin, cisplatin and fluorouracil (5FU). But Dr. George left out the cisplatin. Cisplatin is what causes the neuropathy and other nerve damage including hearing loss. She said that because I’ve been on it (or another platin such as Oxaliplatin) almost continuously for two years, it’s time to take a break from it. I think she’s right. The most common side effect of the epirubicin is mouth sores. I have experience with mouth sores from my very first treatments. It was a walk through hell. But I’ll do it if I have to. I have to go back there Wednesday for hydration and to be taken off the 5fu pump. I have yet another appointment next week with Dr. George’s office for an interim blood test to make sure my counts are OK with the new regimen. I asked Kelly, a chemo nurse, if they had any other patients who have been coming as long as I have. She said “while they’re living?” I said well they can’t come when they’re dead can they? She said only on Halloween. So I’m doing a lot of running around to doctors. Oscar had two vet appointments mixed in with another one on Friday so he’s going through it with me. Last week my brother Tim and I had the lunch we agreed to have. It was awesome. There was some serious discussion, some laughter and some emotion. It was a great step towards fixing things between us and I’m hoping for more. Please say some extra prayers for Robbie LaSalle. Rob is the patient who has two forms of cancer, adenocarcinoma and small cell, in his gastric system. He has reached a point where the doctors feel surgery may work for him. Tomorrow he goes for pre-ops and he’ll have the surgery later this week. They’ll remove his stomach, part of the esophagus, and perhaps more. This is very major surgery. He’ll have a very long recovery. His life will never be the same. But the hope is it will be a life. So we need prayers to get him through the surgery, have as easy a recovery as possible, and for success. It’s a tall order but God can handle it. Carry on Rob. --------------------------

Some More Personal Stuff

WARNING: If you’ve felt in the past that some of my personal notes are depressing I have two pieces of advise. First, don’t read this. You’ll probably find some of this depressing. Secondly, don’t be depressed. I’m not. I have my moments but I think that’s to be expected in this situation. Overall, I’m happy, content, lucky in many respects, and still enjoying life. I try not to write about day to day personal things because I don’t think anyone cares. Besides, my day to day life is pretty boring. But when I feel something that I think is directly related to my situation I think it’s important to share it. I think it may help someone else going through something similar to know they are not alone. Here are a few things I learned, realized or have experienced while on this journey. First a couple of things I’m experiencing: I am finding that my mind keeps bringing back all of the regrets I have in my life. I relive them vividly. I feel both sides of the situation, mine and the other person affected by it. I have learned from these things. Too bad I didn‘t learn them earlier. I’m finding that I’m very emotional now. I can hide it from most people pretty well but it’s very hard for me to talk to my children about anything significant without bursting into tears. When I’m alone I think a lot and a lot of things make me cry to myself. I think it’s better to be alone at such times than to dump depression on people. The only problem with it is that there’s nobody there to hold me. The last few days have been unseasonably warm. I’ve been able to sit on the patio and soak in some sun and warmth. Have I mentioned how much I love the sun? I think I’ve found a piece of God in the rays. It’s as if the sun rays are God’s arms. And they hold me. I realized that I have two heroes in my life; my father and my son. Both of them possessed or possess qualities I admire and wish I had. Both are men I wish I could have been. I have learned that God has been with me throughout this journey. He has guided me, comforted me and taught me. Last Sunday I learned the motto of the Special Olympics. It struck me because it summarizes my prayer to God about this battle. “Let me win but if I can’t win let me be brave in the attempt.” I’ll carry on. -----------------------------------------------------------

A Lot of Nothing

I have a lot to report but none of it amounts to very much. I had a chemo treatment this week with the accompanying blood tests. The liver enzymes are still fluctuating, some up, some down. In general I’d have to say they’ve stabilized. Dr. Nosher’s, the doctor who did the SIR Spheres, assistant Donna said that the most important liver function measure is the bilirubin count. My bilirubin count has been within normal range all along so that’s good. Not so good is the CEA count which measures tumor activity. It went up again. It’s now at 57.5 which is just about where it was when we started this FOLFOX chemo regimen. Dr. George said it’s time to change the regimen but she’s having trouble finding a suitable one. In other words we’re running out of options. I took it upon myself to see a radiation oncologist, Dr. Cann. I was looking into the possibility of external beam radiation to my liver and possibly my lungs. Dr. Cann said that what’s going on in my lungs is very minor and did not recommend doing anything there at this time. He said he could radiate the tumor on my liver but the liver moves when a person breathes. The means they would have to radiate with a margin to may sure they got the tumor. That increases the risk of damaging good liver tissue. He recommended pursuing other possibilities for now and keeping this as a less desirable option. I also took it upon myself to again contact the Cancer Institute of NJ to explore the possibility of some kind of ablation to the liver, probably Radiofrequency Ablation or RFA. This involve inserting an instrument to the liver that thermally burns the tumor. I have not yet gotten to the right person to set up a consultation for this. In the meantime the wheels are in motion for a re-treatment with SIR Spheres. That cannot be done however until the middle of November because they have to wait six months from the last treatment. Yesterday I attended a full day continuing education seminar to maintain my real estate instructor’s license. I’m not sure why I did because I’ll probably never teach again. But I had a yearning to do it. I think I just want to make sure I die with credentials. One very good thing came from it. I saw my brother Tim. I knew he would be there. Maybe that explains my yearning. We agreed to have lunch together soon and that’s a beautiful thing. Not much to be encouraged about here but I still have some fight left in me. Carry on. -------------------------------------------------------------------

This Was My Everest

Around August 2008, Terry and I went to Pyramid Mountain in New Jersey. There are several trails that lead to the top and of a rock formation known as Tripod Rock. It’s one large boulder (160 tons) that was deposited long ago by a glacier on top of three much smaller rocks. The boulder sits on top of the rocks, apparently defying gravity and our perception of balance. It’s a remarkable display of nature. I couldn’t make it to the top that trip. I simple ran out of energy, became exhausted, and we had to head back down the mountain. That was before I was diagnosed but it was one of my original symptoms that eventually led me to the doctor. In July of this year I was contacted by Paul Hamell. Paul is a fellow EC patient who underwent successful surgery almost three years ago. Paul is also the administrator of the ACOR list serve for esophageal cancer. For those unfamiliar with the ACOR list it is an email subscription service where patients write in questions, their history, responses to questions, or anything else related to a particular form of cancer. I have learned much from this service including the information about SIR Spheres. Paul and his wife are ardent hikers. Paul is on his local first aid squad. Paul saw this item on my bucket list so he offered to escort us to Tripod Rock. Paul and his wife were the perfect escorts so I couldn’t refuse his generous offer. We decided to wait until the Fall when the weather was more conducive and yesterday’s weather was perfect. We went. AND I MADE IT TO THE TOP!!! The hike was 20 miles round trip ascending 18,000 feet and took 9 hours to complete. OK I’m exaggerating. It was about 3 1/2 miles round trip ascending 500 feet and took 4 hours. That was with me stopping numerous time. I lost count at about 37. BUT THIS WAS MY MT. EVEREST! And I did it. Here's Paul and I at the rock Here's two shots that give you a better view of the phenomenon These two shots show some of the terrain we had to deal with It’s hard for me to express how good it made me feel to have accomplished this. And to be able to have done it while enjoying the company of two beautiful people made it even better. Unfortunately I can’t check it off my bucket list because Terry wasn’t there but it still meant a lot to me. Carry on. --------------------------------------

Time For Action

Yesterday I came off the infusion pump which completed my 40th chemo treatment. I also received blood test results. The liver enzymes seem to have stabilized. They’re not going up or down. So although they are higher than they should be they are not getting any worse. Unfortunately however my CEA count is still rising. It went from 28.7 to 39.9. It’s still not as high as when I started this FOLFOX regimen but I think it’s clear that the benefits I enjoyed at first are beginning to wear off. That’s to be expected. There is no chemo agent known yet that kills adenocarcinoma cells. Sooner or later they mutate to become immune to the chemo. I just wish we could have gotten a little longer response from this one because there aren’t too many left. Dr. Nosher, the doctor who did the SIR Spheres treatment, has been away this week. Dr. George, my oncologist, plans to talk to him on Monday to explore other treatment possibilities. She was able to find out that his advise last week to wait about three more months and then we may be able to retreat, was not based on a possibility that that the remaining tumor may resolve itself. Rather, it’s based on the precautions they take to protect the liver. They like to wait at least six months since the last treatment. I am not content to wait. I have begun exploring the possibility of surgery to remove the liver tumor and/or external radiation. I should know more next week. I learned early in this battle that you have to be your own advocate. So I’m advocating for Jerry. This is a time for action, not waiting. Carry on. -----------------------------------------

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. ----------------------------------------------------

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. ------------------------------------------

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. ------------------------------------------------

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. ------------------------------------------

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. --------------------------------------------------------------

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. --------------------------------------------------------------

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. ----------------------------------------

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. -------------------------------------------------

I Do and I Would

On Friday evening my daughter Heather was married to Ed, the love of her life. They said “I do”. I was blessed to be able to walk her down the aisle and to dance with her to my song for her. I cannot describe the feelings of joy, love and pride that I felt. I will not only remember those moments for the rest of my life but I will feel them whenever I think of them. More importantly than my feelings though were Heather’s. I could see that she was extremely happy. Thank you Ed for making her so. I did pretty good holding back the tears as I escorted her to her man. But I lost it while we danced. Some of you may not know that Heather and I were estranged at one time. We didn’t even speak to each other for a number of years. Thankfully we began to mend our relationship before I was diagnosed. The mending process was accelerated after I was diagnosed. So Friday’s event meant that much more to me. I know that God doesn’t bargain. But if He had spoken to me two years ago and told me that I would get the opportunity to again have a loving relationship with my daughter, to walk her down the aisle and to dance with her at her wedding, but in exchange I would have to battle esophageal cancer, would I make that deal? I would. I love you Goose. -----------------------------

Creatinine

I got the call from the doctor's offce. My creatinine level has come down. It's not normal yet but it's not rising and in fact is heading in the right direction. The nurse told me they checked with Dr. George to see if she wanted to do anything and she said no. Of course I know she really wanted to go out a celebrate that now she can give me more chemo. Carry on. ------------------------------------

Chemo Sucks

Just when you think things are going well this lousy disease shows up with another weapon. I got a call from the doctor's office telling me that Dr. George (the Chemo Kaiser) is concerned about my creatinine level. Creatinine serum, measured as part of the standard blood tests, is an indication of kidney function. Mine's running a little higher than it should be. My concern is that I'm beginning to reach the point where by body can't take any more chemo. As the drugs attack the cancer cells they also attack healthy cells. Adenocarcinoma cells are very stubborn and there is no known drug to kill them. Unfortunately, healthy cells are not as strong and eventually succumb to the attacks. Dr. George's concern is that she may not be able to pump any more chemo into me. So on Monday I'll go in for more blood tests and based on the results we'll decide what to do. We may have to back off on the regimen that seems to have been working so well against the cancer. But nothing bothers me this week. I've lived long enough to make it to my daughter's wedding. Carry on. --------------------------------------------

Who Could Ask For More

Just a quick update from the most recent blood tests. First the minor (hopefully) bad news. My liver enzyme counts are still elevated meaning my liver is not functioning at 100%. I'm still hoping that's normal reaction to the SIR Spheres. More importantly though, my CEA count came down further. It's now at 20.7. It was at 58.4 when we started with the FOLFOX regimen and has been coming down steadily since, indicating a good response to the treatment. To top it off, I've been tolerating the poison very well. What more can you ask for from a chemo treatment? Now I'll get an extra week off from treatment. Next week I'll be walking my daughter Heather down the aisle. Life doesn't get any better than that. Carry on. ----------------------------------

Esophageal Exhaustion

There seems to be a condition that is prevalent if not universal among esophageal cancer patients. All seem to suffer from weakness, loss of stamina and reduced energy. Personally, I can’t do more than about 15 minutes of anything physical without needing a ten or fifteen minute break. I can’t even stand for too long without having to sit down. In my case, and with all the patients who are on chemo, I think it’s the effect of the chemo. It’s not only an immediate side effect, but a cumulative one. It seems to get worse the longer one is on chemo. If a patient is not a surgical candidate chemo is usually never ending other than periodic breaks. But there are patients who have had an esophagectomy and are no longer on chemo. Many have been off it for a long time and still do not have the energy they once did. Recently I discussed this with Paul Hamell, a patient I met who has had the surgery and has been cancer free for more than two years. He experiences shortness of breath and lack of energy when he does certain things. He pointed out that when part of the esophagus is removed, the stomach is pulled up to be reattached to the remaining part of the esophagus. This puts the stomach in the chest, occupying space that is normally exclusive to the heart and lungs. This has a crowding effect that makes it more difficult for the heart and lungs to expand thereby causing the symptoms described. So when it comes to energy and stamina it seems you are damned if you do and damned if you don’t have the surgery. I’ve learned to live with it. In fact it does have it’s benefits. Did you ever engage in a physical workout and reach a point of exhaustion but felt really good afterwards? I can do that in ten minutes! I have another round of chemo next week and then two weeks off from it. During the first off week I’ll be walking my daughter Heather down the aisle. I’m really looking forward to it but I think I’ll end up crying. During the second week I’m scheduled for a PET scan. Not only will it provide the normal information about how effective the treatments are but it will be the first measure of how successful the SIR Sphere treatment was. Speaking of PET scans, I recently started following the blog of Becky LaSalle. Her husband Rob was diagnosed last December with stage 4 small cell cancer at the GE (gastroesophageal) junction. The junction is where my cancer originated but small cell is a very unusual type for that location. In April it was discovered that he also has adenocarcinoma of the esophagus. Adenocarcinoma is the type that I have. It’s highly unusual to have two primary types of cancer in the esophagus. Rob is scheduled for a PET scan next week to see how effective his treatments have been. Please pray for him. He’s fighting a double battle. Carry on. ------------------------------

What I Don't Know; What I'm Learning; Medical Update

The last couple of days have been very heart warming. Niki Jensen, a friend of the late John Hawker, left a comment on my blog. I didn’t know she read the blog. She said “more people than you know are cheering for you.” This was confirmed by my son AJ’s girlfriend Lindsey who I found out walked in my honor at the American Cancer Society’s Relay for Life. I didn’t know she was doing that but when I found out I was deeply touched. The picture above is from that event. Thanks Linds. Niki's comment was further confirmed today. I was talking to my Aunt Barbara in Massachusetts. There is a retired priest who lives in the same community as she. On Monday she asked that priest to say a prayer for me. He told her that the next day, he would offer his daily Mass for me. So yesterday there was a Mass said for me that I didn't know about. It’s comforting to know that there are so many people supporting me, even when I don’t know it. Comments left by Tracy Hawker, Johns widow, and Angie Poll, Travis Poll’s sister-in-law, supported my belief that animals have a guaranteed place in heaven. Mandy Poll’s (Travis’s widow) mother Judy commented with an explanation of why it is natural to fear death even if we have faith in God and His eternal reward. All of these comments make so much sense to me that I have to accept them as truth. My learning continues. On Monday I received chemo treatment #35, the third FOLFOX treatment. Today I received the test results from the blood drawn that day which is reflecting two treatments. The way I received the results was unusual. As soon as I walked into the chemo lounge, Patrice, the nurse immediately came over to me with a copy of the report and a graph of my CEA count. I think she was excited to give it to me. The CEA count came down again, to 29.8, extending the good response we're getting from the FOLFOX. To make it even sweeter, I went through the last two weeks with almost no side effects other than some jaw pain and touch sensitivity to cold things. Both of those are common side effects of the Oxaliplatin. I still have very low energy and stamina but that has become a way of life. I can't ask for any more at this stage. So I carry on. Right now it's a little easier. --------------------------------

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. -------------------------------------------------------

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. ----------------------------------------

YAY FOLFOX!

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. --------------------------------------

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. -------------------------------------------------------

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. -----------------------------------------

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. -------------------------------

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. -------------------------------------------------------

Travis Poll

Travis passed away on Friday. Saint Joseph, the patron saint of the dying, was watching over him. He passed beautifully while in his wife Mandy’s arms. I never spoke to Travis. I never heard him speak or read anything he wrote. But I feel I knew him. I knew him through Mandy who was good enough to share their esophageal cancer battle through her blog. Through it Travis has been a part of my battle. He was an example to me both in the fight and in life. I believe I mentioned in previous blog posts that Travis was diagnosed after I was and that he was 37 years old. I was wrong on both counts. He was diagnosed about 7 months before me and he would have been only 36 on Saturday. His family and friends celebrated his birthday Saturday with cake, ice cream and children playing games, including the four beautiful children he left behind. They sent 36 balloons up to Heaven. Rest in peace my friend. ---------------------------------

Let's Continue

Last week was not good but it was salvaged somewhat on Friday when Larry Alvey finally got approval for the SIR Spheres. Amazingly, he had the mapping done on Tuesday and then both sides of his liver were radiated on Wednesday. So a process that stretched out almost two months for me was completed in 5 days for him. They must be either way behind us or way ahead of us out there in Denver. Since he had it done at one of the first places in this country to do SIR Spheres by one of the pioneer doctors I'm guessing they're way ahead of us. From now on I'll get all my SIR Spheres in Denver. I'm in kind of a mental holding pattern now. The news about John and Travis has numbed me. I feel like I don't want to even think about cancer, treatments or test results. On Tuesday I completed my 31st chemo treatment but chemo treatments seem to be very routine now, part of life. I am enjoying the great weather, working in the yard, spending time with family and just living. Terry's been having a problem with a tooth she had some work done on. I've been more worried about that than I am about this other garbage. I think that's an indication of how I've suppressed thoughts of cancer. So I'm going to continue in my little world of "fugettaboutit". I'm going to just live for a while. Carry on. -------------------------------

Cancer Sucks. Esophageal Cancer Sucks More.

This has been a terrible week. On Tuesday I got blood test results. My liver function readings have deteriorated somewhat. The CEA (tumor marker) reading shot up, the opposite of what I expected. John Hawker passed away on Wednesday. Yesterday hospice was called in for Travis Poll. He's in a lot of pain. It's easy to get discouraged. ------------------------------------------