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.

Monday, December 27, 2010

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.


Saturday, December 25, 2010

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

Tuesday, December 21, 2010

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

Saturday, December 18, 2010

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

Sunday, December 12, 2010


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

Wednesday, December 8, 2010

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

Friday, December 3, 2010

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