THE KAISER

On Tuesday I discussed taking some time off from chemo with Dr. George. She agreed it might be a good time to do it and suggested going to three week cycles rather than two for a while. She said that had the PET scan been totally clear she would have said to take a clean break. But the chemo kaiser wants me to take one more treatment on the two week cycle. Dr. George has done right by me so far so I have to take her advise. She doesn't let me whimp out. I can feel the neuropathy increasing but things could be worse. For many people they are. I will carry on. ---------------------------

IT IS WHAT IT IS

There’s a lot of cold hard facts and some darkness contained in this post so continue at your own risk. We had the appointment at the Cancer Institute of New Jersey. I must say they were very thorough. There were two doctors involved. They both examined me, questioned me, read all the reports and looked at the actual scan pictures. They spent a lot of time with us and never rushed us. By the way, since I had the pictures in my possession the day before I took a look at them. Upon careful, concentrated examination I was able to confirm that there were in fact some pictures taken. Beyond that I had no idea what I was looking at. We didn’t learn anything that we didn’t already know. The good news is that they confirmed there has been “significant” progress made since diagnosis. In fact, Dr. Elizabeth Poplin, the main doctor, commented that judging from the scans, in particular the liver scan, I started from a situation which was “very close to something bad happening”. She was saying that I was close to death. She said that Dr. George, my current oncologist, “brought me back”. When I think back to how I was feeling at that time compared to now, when I compare my liver function blood tests from then to now, she is probably right. The bad news is that they confirmed the cancer will get “smart”. It will sooner or later find a way around the chemo and start to grow and spread again. That’s what this kind of cancer does. There is no cure for it. It does not go away. But we knew that. Dr. Poplin discussed treatment alternatives. According to her the only reasonable options were variations of the chemo drugs used. There is no expected benefit from radiation, surgery or any of the less conventional approaches. In other words, what we are doing now is what we should be doing. She did not recommend doing anything different. Although it would have been nice if she said there was a good shot at a cure with a different approach I was not expecting that. It is somewhat comforting to know I’ve been advised properly. The simple fact is that complete recovery from this disease would be a miracle. Dr. Poplin pointed out that we can still hope and pray for a miracle. She said something that we knew and is very obvious when you think about it but the way she said it really impacted me. She said that if there is going to be a miracle, it doesn’t matter what they do. That’s so true. God doesn’t need doctors or chemo or anything else. We then discussed my present condition, specifically the worsening side effects. Dr. Poplin commented that my body was very “beat up” now. That’s actually the nicest comment I’ve ever gotten from a woman about my body. I am at the point now where fifty percent of the time I have almost no energy, strength or stamina. The other fifty percent of the time I have very little. What is more troubling to me though is the neuropathy. Although this is a new problem, Dr. Poplin confirmed what I had read previously. This side effect takes a long time to appear. It’s been seven months in my case. It also takes a long time to go away. It’s been known to linger for a year or more after stopping chemo completely. She warned me that it can get so bad that I could lose the use of my hands and/or feet. She said I should not wait until it gets to that point before doing something about it because even stopping chemo completely would not solve the problem for some time. So, what can be done about these side effects? It may be possible to adjust the drug combination used in my treatments in an attempt to eliminate the drug causing a particular side effect. There are many other drugs to choose from. Dr. Poplin pointed out that in addition to the wide variety currently in use, Cancer Institute of NJ conducts many clinical trial for new drugs, including phase one trials that other places cannot participate in. There are several problems with tinkering with the drug combination. There is no guarantee that a new drug will be effective in fighting the disease. There is no guarantee that we will pick the right drug to eliminate the side effect being targeted. Any new drug will have its own side effect. Dr. Poplin said it makes more sense to take a break from the chemo. This is something that Dr. George also said should be done at some point. I must confess that this is scary to me because I fear that I would be jeopardizing my chances of survival. Actually I didn’t have to confess this. Terry told the doctor that I felt this way and I don’t recall ever telling Terry that. After the appointment Terry and I sat in the car and discussed things. Terry is more convincing than the doctors. I will be taking some time off from chemo. As the doctor explained, we have to try to find a proper balance between fighting the disease and living life. It’s the quality of life thing that cancer patients hate to hear. It’s hard for me not to fear that I will be compromising the fight. But I think it’s the right thing to do. I read or heard it said somewhere recently that there’s no point saving a life that is not worth living. I do not want to live a life spent in bed because of weakness. I do not want to live a life without the use of my hands or feet. Don’t get me wrong. I would gladly live such a life if it meant I would continue to live. But it wouldn’t mean that. It would probably result in death anyway. There are also some sound medical reasons for taking some time off. Dr. Poplin pointed out that continuing treatment non-stop could eventually lead to kidney failure or some other side effect which would force us to stop. Also, a break may have the effect of prolonging the effectiveness of the drugs by not allowing the cancer cells to get “smart” to them. Terry pointed out some of the more positive aspects. It’s outdoor weather time. I love working out in the yard and maybe I’ll be able to do more of it. This is our time of year for enjoying the yard and the pool. So on Tuesday I’ll go for my next treatment and talk to Dr. George about the best way to take some time off. I don’t know if she’ll suggest extending the time between treatments or simply staying off the chemo altogether for a while. It‘s ironic. I was apprehensive about starting chemo, now I’m apprehensive about stopping. The most discouraging aspect of all of this is that I continue to hear from doctors how well I’m doing. And then they say “but it won’t last”. Then again, in order to survive long term I have survive short term first don’t I? When Terry and I got home from our appointment I showed her an entry on an esophageal cancer forum that I follow. It was from the wife of a man who was diagnosed with adenocarcinoma, the same as me, in September of 2008, the same as me. Hospice has been called in for him. As I said, I love working out in the yard. In prior years, when I finished trimming a shrub I would step back and admire my work. I’ve been trimming shrubs for the past three days and at the end of the day I step back and admire my work. And then I thank God that I’m here for another season to do it. It doesn’t matter that I have to limit how much I do and take frequent breaks. During one of those breaks today I sat on a rock in the middle of a garden overlooking the pool. I thought to myself that it would be a great place to be buried. But it’s not near my father so it won’t work. In the balance between treatments and living that I hope to achieve Terry and I will be spending much of this summer out back enjoying our yard. And I’ll be admiring my work. Please stop by. We’d love to see you and share it with you. I want everyone to recognize the fact that for me to survive this disease long term would in fact be a miracle. It’s important you recognize that because wouldn’t it be a shame if you are privileged enough to witness a miracle and you don’t realize what you are seeing? I’m going to try to show you one. Your prayers have gotten me this far and I hope you’ll continue them so I can go further. Thank you. ------------------------------------------------------------------------------

RANDOM RAMBLINGS

I recently discovered a web site that contains an abundance of great information about esophageal cancer. It has some very important information about how heartburn and gastroesophageal reflux disease (GERD) can lead to cancer. I urge everyone to take a look at it, particularly if you or anyone you know experiences heartburn or GERD. Heather, AJ, read up (I’m still here to nag you). It’s also a good reference for learning more about this disease and if you read some of it you’ll see a lot of the facts and statistics that make my prognosis as bad as it is. Enjoy! Click here for Esophageal Cancer Info Yesterday I felt like I had enough energy to get out and do some work in the yard. I went outside, fully motivated, only to discover that it was in the low 50’s. Not acceptable. I run on solar energy and for me that includes heat. So I came back in to wait another day, expecting that I’d have even more energy and it would be warmer. I was right!!!!! Today was a beautiful day and I was able to do more than I expected. Not much, but more than I expected. It felt good. Then AJ came over and we watched some videos together making it a truly glorious day. I was able to finalize arrangements for my appointment at the Cancer Institute of NJ. It took several phone calls, making arrangements with my oncologist to fax some records over, driving to a local hospital to pick up scan tests, and tomorrow Terry and I will drive to the Center which is about an hour away. Do you think I’m going to too much trouble to try to live? I don’t expect much to come of it but I have to make sure I’m doing everything possible. Terry and I agreed to work bingo at our Church. The school is discontinuing it as a fund raiser and the Church is taking it over. We’ve both done it before. They need the help and I need the brownie points. I am experiencing something new in my life, eating for nourishment. Ironically, after a lifetime of being an overweight overeater, I don’t enjoy eating anymore. Obviously this is due to the loss of taste buds, but it’s weird. I eat all I can at a meal but frequently supplement it with a can of Ensure to make sure I’m getting enough nutrients and calories. Actually it’s not Ensure. It’s the store brand of it cuz I’m still cheap. Now that I think about it’s appropriate that I rely on Shop Rite for some of my health concerns. Prior to this illness I used to go there monthly for the free blood pressure screening. Shop Rite was my primary care physician. Now I use them as my nutrition specialist. I’m sure that if I ever get my taste buds back my love of food will return as well. In the meantime I keep losing weight although no one would know. I used to be very fat. Now I’m just fat. On a more serious note, it’s quite possible that God gave me this disease in order to extend my life. Without it I might very well be dead from a heart attack by now. Remember, we can never know what His plan is. We must accept it and do our best with it. I’ve had to officially add another side effect to the list; neuropathy. My fingers and toes get those “tingly”, numb feelings. When combined with the already sensitive fingers due to the loss of nails I don’t know what I’m feeling in my hands. I do know that I drop things a lot and have virtually no dexterity. Something has to give soon. I hope it’s not me. Carry on. -------------------------------------------

ATTACK!!!!

There are several assaults underway in this battle I’m fighting. First, beginning last Friday, an attack was begun on my bucket list. My daughter Heather took a big step towards getting the job she wants. She’s not there yet so I can’t count it as a bucket list wish achieved but she has been working hard and I know she will get there. She certainly deserves it. On Sunday the bucket list attack heated up. My mother and I, along with her companion Paul, planted marigolds. This was the first of my bucket list wishes to be fulfilled. Click on “My Bucket List” on the right to see a picture. Another assault underway is the chemo’s attack on me. Each treatment gets tougher in terms of fatigue and weakness. It hits me sooner and lasts longer. While getting the last three treatments I was hit by a wave of nausea. Patrice, my onco nurse, gave me something for it and it passed each time but this is a new development. During the most recent treatment this past Monday, my fourteenth, I developed a rash or perhaps hives. Patrice threw some Benadryl into my cocktail and it went away but this was something new. I am starting to feel indications of neuropathy in my extremities. It feels like the chemo is slowly trying to get me to give up. I’m not ready to give up. I’m on a reconnaissance mission. I got the PET scan results on Monday and it showed improvement. I can’t give many details because I don’t fully understand it but Doctor George confirmed that there was improvement. My liver function is still good. Now I know that my disease was diagnosed at a late stage and that usually leaves very few options. But I have read a lot on the internet and I have found a few cases similar to mine where other approaches have been tried in addition to systemic chemo. I feel that this recent improvement may be my opportunity to try something new so I have requested an appointment at the Cancer Institute of New Jersey, a part of the Robert Wood Johnson Medical School for another opinion. Perhaps nothing will come of it but if this is in fact an opportunity I can’t let it pass. Enough defense. I think some offense may be in order. This disease has been attacking me long enough. I’m going to try to attack it now. ----------------------------------------------

PLEASE NAG MY CHILDREN FOR ME

It appears that both of my children suffer from gastroesophageal reflux disease (GERD), more commonly known as acid reflux. This is alarming because I had it off and on throughout my life. Unfortunately for me it was never bad enough for me to seek medical remedies. I just popped Tums or Alka Seltzer as needed. GERD, over a period of time, can lead to a condition known as Barrett’s Esophagus in which the cells of the esophagus begin to be replaced by gastric and intestinal cells. Barrett’s Esophagus often leads to esophageal cancer, specifically adenocarcinoma which is what I have. It is not a certainty that GERD will lead to Barrett’s and it is not a certainty that Barrett’s will lead to adenocarcinoma but there are conclusive scientific links among the three. It is not a certainty that my adenocarcinoma originated as GERD. There is no proven scientific genetic contribution to the risk of adenocarcinoma however there is for Barrett’s Esophagus. It seems to me this would make at least an indirect genetic factor for adenocarcinoma but I’m not a scientist. Anyway it is very possible that my children are genetically predisposed to Barrett’s Esophagus from me. In addition, their grandfather on their mother’s side had a hiatal hernia. Virtually all GERD patients have a hiatal hernia which is believed to contribute to the GERD. What does all this mean for my children? Right now it’s not at all serious. GERD can be controlled and they both seem to know that they have to try to control it, primarily through diet. They have both been prescribed Nexium, the purple pill you’ve probably seen advertised. The important thing is that they monitor their esophagi (is that the plural of esophagus???). Periodic endoscopies is one way to do this but I’ll leave it to their doctors to advise them exactly what to do and how frequently to do it. The important thing is that they remember to be proactive and never let it get the adenocarcinoma stage. I will probably not be around to nag them as the years go on so I need those of you who are to nag them for me. A reminder….Have your doctor do an endoscopy on you whenever you have a colonoscopy done. It is not a routine screening that would normally be covered by insurance so tell your doctor you think you have acid reflux. Remember to burp. If you actually have or have had acid reflux don’t wait until your next colonoscopy. If I had known this and did it with my last colonoscopy they would have caught the cancer earlier which would have improved my chances of survival. On the lighter side…. You may have noticed from my last post that I was a little depressed. I was also weak so I scheduled myself for an extra session of hydration. It’s hard to say if that session helped the weakness but it definitely helped with the depression because I got a great laugh out of it. When the nurse pulled the neck of my shirt to the side in order to access the port-a-cath there was some kind of fabric covering the port. I looked at it and got confused. I was reasonably sure that she was the first person to go near the port that day but this looked like a piece a gauze. Had someone already taken blood? Was my chemo brain playing tricks on me? And then I realized what it was. A dryer sheet. We both laughed hysterically. I would have been embarrassed except she told me about the time she walked into the office and one fell out of her pants leg. At some point she made a comment like “you guys are all the same”. Don’t worry guys I defended us. I told her there was no way a guy would use a dryer sheet. In fact, we may not even use a dryer. We’ve been known to just leave the clothes in the washer. As long as mold doesn’t form they’ll be dry and ready to go in a week or two. And people spend too much money on laundry additives. A real guy doesn’t even need laundry detergent. We’ll just throw a bar of soap in there and let it spin. On the medical front…… I got an unexpected extra week off from chemo. The PET scan machine was broken so they couldn’t scan me on Monday as planned. It’s now rescheduled for tomorrow. The chemo treatment has to be done after the scan because the chemo stimulates cellular activity that would be seen on the scan and possibly confused with cancer activity. I would need three days after Wednesday for the chemo and since no patient is worth the medical profession working on the weekend the treatment was postponed until next week. I like having the extra week off but I worry that I am jeopardizing my chances. Strangely I don’t have scanxiety. I just kind of feel that it is what it is and what it is is in God’s hands, not mine. As long as I’m here I’ll nag my children about monitoring their GERD but there will come a time when I need you to carry on for me. Thanks. -------------------------------------------------