I won't have any new medical information to report until after next week's treatment so I thought I'd give you another glimpse into the mind of a man facing death. I mentioned before that I was concerned about my dog Oscar. I'm afraid he won't understand where I am and he'll think I abandoned him. Below is an image I keep playing in my head. I should mention that I will miss Oscar, although not more than I will miss my family. But I do sometimes think that he will miss me more than anyone else will.

An Abundance of Gifts

Sine I was diagnosed about 15 months ago I have been blessed with many gifts. I think today is a good day to look at the again. Here’s some of them I case you’d like to share. *Trrrrr *I reconnected with my Godmother, Aunt Jo-ann, or Auntie Eleanor to us Wymans *Fresh contact with my friend Bruce and his wife Rhonda *Frequent calls from my niece Cheryl *Fresh contact with my ex-sister/brother-in law, Sandy and Jimmy *Better relationships with my children *A better relationship with my mother *A visit from my nieces Jodi and Michele *Visits from our friends Denis and Carol *Matt’s dinner *Father Herb and Sister Sylvia *A great oncology team, Dr. George, Patrice, Lynn, Chris, Karen, Sandra, Geri and the new blood lady, all who make the treatments pleasant *Rolinda and Marny, ladies who are still fighting the EC war even though their own personal battles are over *Hearing from so many people from my past *John Hawker, Richard Martin, Mark Richardson, Travis Poll and all the other EC patients who inspire me *Learning what a good friend Jennie is *Realizing what good friends Linda and her family are *Reconnecting with Trudy, Joe and Linda *Chris, Nancy and all the Chemo Angels *Daily conversations with my mother *A visit from my friend Charles *Good PET scans *Hearing from my children’s friends *So many prayers *Little miracles like Sister Sylvia’s visit and Kris’s Rosary *Visits from my children *Grandson Jake *Frequent conversations with my Aunt Barbara *Better relationships with my sister and brother *Great in-laws, Jackie, Camille, Bob and Ma *My good friend Vince who shares many laughs and much wisdom with me *And the best gift of all …… LIFE ….. 15 months of it that most people didn’t expect me to have. And I think I have some more left in me. Merry Christmas everyone.

A Different Kind of Pain

I had the hernia repair surgery on Monday. It went very well and I felt no pain at all….until Tuesday. Then the pain was excruciating and has been ever since. You don’t realize how often you use your abdominal muscles and every time I do the pain practically knocks me out. I broke down and used some of the pain pills they gave me which I hate to do. On the bright side this is a good pain. It is a healing pain. At least I know that when it’s over it’s over, unlike the pain caused by the hernia itself. With that pain I never knew when it was coming back. So now I’m done with doctors, hospitals, drugs and everything medical. Well at least for another week and a half until I go back for chemo. Carry on. -----------------------------------------------------

I'll Give You a Break

I’m going to give you a break from my death talk. Here’s a medical update. Several weeks ago I saw a surgeon who concurred with my diagnosis. I have a hernia. He said it was a pretty bad one. Since then I’ve had several more episodes with it and each one seems to hurt more than the last. So I’m going to get it fixed. And even though I was the one to diagnose it I’m letting the surgeon do the repair. At first Dr. George (the Chemo Kaiser), did not want me to have surgery. She said she could fix it by doubling up on my chemo doses. Just kidding. She said it was not a good idea to have an open wound while on chemo. But when I explained to her how bad it was she gave in. But it had to be carefully coordinated with the chemo. The surgeon recommended it be done two weeks after a treatment and two weeks before a treatment. So it will be done next week, Christmas week. Some people have questioned my decision to do it so close to Christmas but they fail to realize several things. First, it is very uncomfortable and I want it fixed. Secondly, it has to be coordinated with the chemo treatments so there’s a small window of opportunity. Thirdly, if I wasn’t having surgery Christmas week I’d be having chemo. So now I’ll have 5 weeks between chemo treatments…. Woo Hoo! That in itself is a good thing because I’m at the point where I think I need time off. Unfortunately, while the chemo is keeping me alive by attacking the cancer, it’s also attacking the rest of my body. I’m not sure why, but I continue to lose weight. I’ve now lost more than 100 pounds. Luckily (I guess), I was that much overweight so now I’m about normal. But I’m still losing and I don’t know when or if that will stop. Of greater concern to me however is the neuropathy which is getting worse. Frankly, I don’t see much point in prolonging life if that life has to be spent unable to walk or use my hands. So I’ll have the surgery and then deal with that lousy balancing act between quality and quantity of life. In the meantime, have a great Christmas and holiday season. Carry on. ---------------------------------------------------------

Another Thought About Dying

In response to my last post, when I listed my final wishes, my daughter Heather commented “What about Oscar? Surely there is a role for him.” Oscar is my dog. Heather was obviously joking, but there is a lot of truth to what she said. I think about Oscar quite a bit when I think about dying. Those of you who are not dog lovers will think I’m crazy. But those who are will understand. I don’t know who I would rather die first, him or me. I know that it would be very difficult for me if he were to go first. On the other hand, if I should predecease him, it saddens me greatly to think that he won’t understand where I am. He’ll think I abandoned him. (Side bar to my niece Cheryl: Cheryl this would be the ultimate violation of the trust factor.) I would never abandon Oscar. Oscar has been with me through a divorce and my family moving out of my house. He was with me as I courted my current wife and worried every night whether or not she liked me. He was with me through the death of his brother Felix. He's been with me throughout this disease. Oscar is love. He is love I don’t want to be without. As I am writing this Oscar is sleeping in his favorite spot; on my lap. -------------------------------------------------

I've Made A Lot Of Pancakes

Most of the blog and list server posts related to esophageal cancer that I read are written by someone other than the patient. It’s usually a spouse. Mine is one of the very few I’m familiar with that is written by the patient. So I think it’s important to occasionally offer some insight of what goes on inside the head of someone in this situation. It’s not always pretty. But remember, this is a blog about cancer so sometimes it’s not pretty. And you can skip this post if you want. Back in March I wrote down my final wishes. I didn’t post them at the time because I though it might be too morbid. But I think about death often and when I do I fear I might die without anyone being aware of what I would want. So I’m posting my final wishes now. Don’t be concerned. As far as I know my death is not imminent. But it’s coming sooner or later, by cancer or something else and when it does I may not have a chance to let them be known. There is a link to them under “Things Of Importance To Me” to the right. You don’t have to read them now. Just know they are there when the time comes. Not too long ago I received an email from Marny whose husband Dale died of esophageal cancer. Marny continues to offer help and advise to people fighting this battle. She provides support, insight and wisdom to many people. Marny’s email told the story of a young boy who got up early one morning to make breakfast for his parents. He was very young and really didn’t know what he was doing but his heart was in the right place and he wanted to do this for them. He took out some pancake mix and because he couldn’t quite reach the counter top he spilled the flour-like substance on the floor as he tried to poor it into the bowl. He poured some milk into the bowl, but it was far too much. When he put the hand held blender in it and turned it on high power the liquidy batter splattered all over the walls. Somewhere along the way he dropped an egg on the floor and stepped in it. This created sticky pancake mix footprints all over the floor. At this point the boy’s father came down the stairs and into the kitchen. Upon seeing the mess he picked up his son, told him what a good job he had done, and gave him a great big hug. Despite the fact that his son had completely failed and made a mess of everything, the father knew that his intentions were good and he had tried. I’ve made a lot of pancakes in my life. As I look back on my life, which I do often, I see a lot of mistakes. And although I know that my intentions were always good, no one else seemed to know that. Nobody told me “good job”. I’m hoping that when my time comes I’ll meet up with my heavenly father, or maybe even my mortal father, and they’ll tell me I did OK. ____________________________________

Prayers Are Needed

You may recall that a couple of weeks ago I wrote about John and Tracy Hawker. They really need your prayers right now. John is having a hard time getting through a very difficult period with his disease. There is a link to Tracy's blog in my October 28th post. Please pray for them. Thank you. -------------------------------------

Lots To Report

On Monday I went in for my 23rd chemo treatment. I discussed the hernia with Dr. George. She said she would rather avoid surgery because it would interfere with treatments because it is not a good idea to have chemo with an open wound. She suggested a hernia truss or belt which is similar to a girdle. But remember, she is the Chemo Kaiser and loves to keep pumping that stuff into me. The following day I researched the belts and saw that WebMD (my primary physician) recommends against using them. So I think what I’ll do is wait for a while. I think I will need some time off from chemo soon anyway because of worsening neuropathy and I’ll try to coordinate that time off with surgery. Something to look forward to. Dr. George also told me that she wanted to add Herceptin to my treatment. You may recall that Herceptin is a drug (actually an antibody) that has been successful in treating breast cancer in patients whose tumors test positive for an over expression of the HER2 gene. Lately they have been finding it useful in treating gastrointestinal cancers when there is an over expression of the HER2 gene. I tested positive for the over expression back in June. Before using Herceptin Dr. George wanted me to have a MUGA test so she got it scheduled for Tuesday. Now I must say that I was somewhat disappointed when I got to the hospital. I was expecting a MUGA test to be a test in which I sit in front of a camera and make funny faces. But it turned out to be another nuclear injection test that measures heart output. On Wednesday Dr. George had the test results. My heart was OK so I received the first dose of Herceptin. Interesting that within 48 hours the MUGA test was approved by my insurance company, scheduled by the hospital and results sent back to the doctor. I then received a fairly new type of treatment. I think that speaks well of our health care system and makes me worry about what might happen when they start tinkering with it. And I should point out that my health insurance is far from a “Cadillac” plan. It’s more like the mini-van I drive. So now I’m walking around with a large dose of a breast cancer drug in me. I keep putting my hands to my chest. I’m afraid I may soon need a bra. Oh well. It’ll go good with the girdle. The blood test taken Monday showed that my liver function still seems to be within normal ranges although it looks like the numbers are starting to creep up. Maybe the Herceptin will help. Today I went to a special Mass at our church. It was a Mass for sick people. As I’ve said before I don’t feel it’s appropriate to pray for myself so I offered the Mass up for all of the EC patients whose stories I follow. However I really got a lot from it for myself as well. Although I have faith, I’m really not a very religious person. But the ceremony was incredible. There were 4 priests assisted by 4 deacons. Mid-way through the Mass a priest and a deacon went to each participant and prayed over him/her. Then a priest and a deacon went to each participant individually again and administered the anointing of the sick. I could literally feel God’s blessing as I received it. It was very powerful and I felt better the rest of the day. The timing of this treatment worked out well. Thanksgiving will fall in the final week of the cycle so it will be the best time for eating. Carry on. ----------------------------------------------------------------

I Thought I Was Exempt

Don’t you think that cancer patients should be exempt from ordinary day to day medical problems? I don’t want to travel down the self pity path but we do put up with more than average inconveniences and difficulties as it is. Shouldn’t we be spared some of the little things? I thought that’s how it worked. Apparently not. I think I have a hernia, self diagnosed of course. I’ve had it for about two months and have been trying to live with it but it seems to be popping out more and more. When it does I feel a kind of cramping nausea. I can feel a bulge in my groin. The nausea makes me think my small intestine is being partially strangled when it pops out (more self-diagnosis). When it happens I have to lie down for an hour or so until it pops back in. Today I started to pick up leaves but after a short time the hernia made itself known and I had to stop. It made me realize that I have to do something about it or my activities will be limited even more than what the chemo does to me. So after I get through next week’s treatment I’ll go see a doctor and probably end up in surgery for a repair. Maybe I’ll be exempt from something else. Carry on. ____________________________________________

Oh Well

I heard back from the assistant to the radiologist who was making the determination of whether or not I am a candidate for SIR spheres. It appears I am not at this time. Although the radiologist wants to talk to Dr. George, my oncologist, he feels that since the chemo is working for now there’s no reason to try something else. SIR spheres are more of a “last resort” procedure. But he will discuss it with Dr. George before making a final decision. Of course we know what the Chemo Kaiser will say. But Dr. George has served me very well and I trust her judgment. Donna, the radiologist’s assistant, also told me that the CT scan showed fluid in my lungs and fluid in my abdomen. There is a possibility the fluid is malignant. If we were going to proceed with the SIR spheres the fluid would have to be drained and tested first. My last blood test showed that my CEA level, a tumor marker, had increased slightly. So between that and the fluid I’m concerned. We’ll see. --------------------------------------------------------------------

This Is a Brutal Disease

Back in March I did a post entitled “I’m One Of The Lucky Ones”. I discussed how difficult the fight against esophageal cancer is for some patients. Much more so than mine. I didn’t know it at the time but that same month, a man named John Hawker underwent surgery of the type I described. Remember, this is a very invasive, life changing surgery. It’s usually not an option for stage IV patients like myself. John suffered through it and the difficult recovery that follows. He had already been through a couple of months of chemo and radiation with difficult side effects. He was learning to adjust his eating and his lifestyle. By April he was easing his way back to work. I’m familiar with John’s story because last week his wife Tracy contacted me to talk about nutritional needs for patients. Two days later they learned that John’s cancer has returned and in a nasty way. He has a tumor in his neck causing pressure on major arteries. He has to begin radiation again immediately or he will lose the use of his arm. All of this has happened within less than a year since John’s diagnosis. And John’s prognosis when diagnosed was better than mine. He was a candidate for surgery. So you see how lucky I’ve been. I’m now more than a year without the disease advancing and tolerating treatments fairly well. One other thing. John is only 36 years old. John’s wife maintains a journal. You can read about their battle here: John’s Story As I’m about to post this I checked Tracy’s journal for the most recent update. They were told today that there is a small chance the neck tumor is a new lymphoma rather than metastasis of the esophageal cancer. That would be good because lymphoma can be cured. Esophageal cancer can not be. So treatment will be delayed briefly pending a biopsy and PET scan. Please pray for John and for all the patients who have a tougher battle than me. ___________________________________________

Playing The Odds

When I was diagnosed a little more than a year ago, I did some research and discovered that, statistically, my chances of surviving 5 years were only 3% or 3 out of 100. Not too hopeful but I have a chance. When I began chemo treatments Dr. George told me the modality that would be used had a 60% response rate. In other words 40% of patients do not even respond to the chemo. Since my response to the chemo has been good, I have often wondered about something. Can you assume that the 3 people out of 100 who survive 5 years are within the 60% group that responds to the chemo? If so, that would mean that 3 people out of the 60 in that group survive 5 years. Three out of sixty is 5%. Does that mean that by having a good response to the treatment my odds of surviving five years has increased to 5%? Unfortunately that logic is somewhat flawed because it doesn’t take into account people do not respond and then receive a different modality or those who undergo a completely different modality from the start. But I have to believe that my chances improved by responding well. Recently I found out that my odds have improved more than I thought. Colin, another patient and a 9 year survivor, provided me with a link to some National Cancer Institute statistics. Those statistics show that patients with my diagnosis, “Distant” stage on their table, who have survived the first year, have a 10.8% chance of surviving 5 MORE years. In other words, because I have survived the first year, I now have a 10.8% chance of making it SIX years. My chances of making it five years must be even better. So my chances have more than tripled. Of course 10.8% odds are still not very good but hey, it’s better than 3%! Here is a link to the stats if anyone is interested: Statistics As I have been reminded by so many people dealing with this disease everybody is different. We are each a statistic of one. And I have two important things going for me. Firstly, all the prayers. They really do help so please keep them coming. Secondly, I like to rely on my mother’s statistical analysis. She has a gut feeling I’m going to be OK. Carry on. ---------------------------------------------------------

Withdrawal

My energy level is up now. I have some taste buds this week. I have no nausea, no hiccups, no diarrhea and no constipation. My hair is growing back a little and my fingernails are growing back a lot. All in all I feel pretty good. As you can see I’m suffering from a severe case of chemo withdrawal. So Monday I’ll go in and get another fix. I’m making some progress with my investigation of possible candidacy for SIR spheres. The radiologist who will make the determination wants specific blood tests done so they will be done along with the regular blood test that will be done on Monday. He also wants to see a CT scan so one will be scheduled after next week’s treatment. And here I thought PET scans were better than anything and all I needed. Although I’m glad things are progressing and I feel I have to explore it I am not getting my hopes up too high about the SIR spheres. First of all I may not be a candidate. Secondly, the insurance company may not approve it. And even if those two things go well there is no guarantee it will do any good. But I have to try. Terry warned me not to drive myself crazy and ruin whatever time I have left by constantly pursuing a cure that may not exist. She referred to it as “chasing” this thing. She’s right. There has to be a balance between constantly fighting and enjoying whatever time I have left. But she’s wrong about something. I’m not chasing this thing. I’m running from it. Carry on. --------------------------------------

No News Is Good News

I haven’t posted for a while because nothing is happening and nothing has inspired me. Nothing happening is a good thing. Things seem to be status quo. Status quo for me means continuing to get treatments, number twenty one this week, and, thankfully, tolerating them reasonably well. Tolerating them allows me to continue receiving them and since they are effective, that allows me to continue living. I’m tired and fatigued this week but that’s OK. As I mentioned previously my liver is the only place showing “hot” on the PET scan. That doesn’t mean that there isn’t cancer elsewhere. It just means that it isn’t active enough to show up. But the blood tests done this week show that my liver is still functioning well. I can’t help but wonder why it doesn’t make sense to try to attack the cancer specifically in the liver. So I reached out to the Cancer Institute of NJ again. They are one of a very few places using a relatively new procedure using SIR spheres, micro spheres that are injected directly into the liver, via a catheter. The micro spheres contain yttrium-90, a radioactive substance that irradiates the tumors while leaving normal cells relatively unaffected. SIR spheres have proven to be effective with metastatic (non-primary) liver cancer which mine is. Unfortunately, it seems to be used mainly for cancer that has metastasized from the colon. But there are similarities between esophageal cancer and colon cancer, including, I believe, the type of cell, adenocarcinoma. And SIR spheres have been used for esophageal cancer in some cases. One case in particular is with Richard Dickerman who was diagnosed with stage IV EC with metastases to the lungs, liver and lymph nodes in November 2004. His diagnosis matches mine. After undergoing several treatments, including SIR spheres, Richard has been free of all detectable tumors since July of 2006. Very encouraging. Special thanks to Richard’s wife Lois for all her posts to the ACOR mailing list which gave me the information about SIR spheres. There’s no guarantee that I’m a candidate for SIR spheres, no guarantee they would help, and of course there’s always the insurance complications. But I have to explore it. They haven’t responded to my email so next week I’ll have to resort to an old telephone to pursue it further. This was an especially good week for Travis and his wife Mandy. Travis took another giant step in beating this disease. I know they have a lot of people praying for them and they sure are helping. Today is Paul’s birthday. Paul is my late stepfather. Paul taught me a lot, including how to work with electricity around the house. I used that knowledge yesterday to replace an outdoor receptacle which was a good project for me since I could just sit in front of it without needing too much energy. Paul used to work without turning off the electricity. I considered that as a possible way to beat this disease by dying from something else. But I decided to stick around a little longer. Happy birthday Paul. Carry on. ___________________________________________

One Year

Today is the anniversary of my diagnosis. I can honestly say that I didn’t think I’d make it this far. I don’t feel in a celebratory mood, more solemn and reflective. I began the day by going to Mass. Needless to say God has guided me through this and I had to give thanks. The daily Mass is offered in the chapel which is much smaller than the church where Sunday Mass is offered. It provides a much more personal experience which suited me very well. I don’t think it was coincidental that three very meaningful things occurred. As I was waiting for the Mass to begin a lady walked in and sat down several seats away from me. I overheard her tell the lady next to her, through tears, that her son died at three o’clock this morning. I thought of my mother. In his homily, the priest said that we should give thanks to God. He said that if we are wondering what we should give thanks for, we should be thankful for being here today. We should be thankful for being able to walk and to breathe. How appropriate is that for me? The third thing was that my angel was there. The priest welcomed Sr. Sylvia back. Apparently she has been away for a while and today was her first day back. Nice timing Sister. Sr. Sylvia is my angel because I believe that if I survive long term it will be a miracle and Sr. Sylvia delivered that miracle. If you haven’t read that story you can see it in my January 26th post. After Mass I brought flowers to the people at my oncologist’s office to thank them for all they’ve done, especially Dr. George who has kept me alive. I brought flowers to my mother who has provided unending optimism throughout the past year. I brought a planter (she doesn’t like flowers) to Terry who has carried me, almost literally at times, through the past year. I want to thank my children, Heather and AJ for filling my days with love. And I’d like to thank all of you for your support, encouragement and prayers. Not much more than a week ago I feared that I would mark this one year anniversary with bad PET scan results, putting a damper on it. Reaching this point and being blessed with positive results as well gives me hope for making it further. _________________________________________

Today is for Richard

Today is the anniversary of the end of the EC battle of Richard Martin. You may recall from a previous post that Richard passed away on the day I was getting the CAT scan that revealed my disease. His daughter Rolinda feels a bond to others who are fighting this battle and she has been following my blog and providing much appreciated support. Richard and Rolinda have been an inspiration to me. Please pray for them, especially Rolinda who will have a difficult time today. Remember the good times Rolinda. And thank you. ___________________________________

Medical Update

Today I received my 20th chemo treatment. I also received the results from the PET scan performed on August 31st. I said that I was content to wait for the results rather than call the doctor last week but I have to confess that I was concerned. I expected bad news because I’ve been experiencing strange pains and I know that sooner or later this beast will reappear in an ugly way. I am happy and grateful to report that my fears did not materialize. It was a good report. There was improvement in every aspect of the report. For those that like details they follow. For my own satisfaction I went back and re-read the last three PET scan results to refresh my own memory of the progress. I’ll give you the details by comparing this report with the previous three. As a refresher, PET scans involve an injection of a substance that is like a radioactive sugar. Because cancer cells metabolize sugar very quickly, the scan picks up “hypermetabolic activity” where cancer is present. There is also a CT scan (commonly known as a “CAT” scan) done almost simultaneously so they can see things that may not be hypermetabolic. The hypermetabolic activity, in other words how active the cancer is, is measured by how much of the glucose (sugar) is absorbed by the cancer. The measurement is expressed as “Standard Uptake Value”, referred to as SUV. ESOPHAGUS - At the time of the first PET scan in October ‘08 there was hypermetabolic activity in the esophagus with an SUV of 8.9. The second report in January ‘09 indicated that activity could not be identified here. The May ‘09 report and the most recent report make no mention of the esophagus, seeming to indicate that no activity is seen. LYMPH NODES - At the time of the first PET scan in October ‘08 there was hypermetabolic activity in a lymph node near the esophagus with an SUV of 6.2 and one near the neck with an SUV of 3.1. With the January ‘09 scan they were both “not definitively identified”. There was no mention of these nodes in the May ‘09 or August ‘09 scan reports. LUNGS - Originally, with the first scan, there was a mass in the left upper lobe measuring 3.5 cm (diameter) with an SUV of 10.5. By January it had shrunk to 2.0 cm with an SUV of 3.2. By May it appeared that it had shrunk further however the dimensions were not clear. The SUV was down to 1.6. With the most recent scan the dimensions were given as 1.0 x 1.4 which is smaller than in October ‘08 or January ‘09. It also stated that this was unchanged from May ‘09 which lends some clarity to that report. This report indicated that the lung mass was “not associated with hypermetabolic activity”. Dr George said this probably meant that the cells were dead, obviously a good thing. LIVER - This has been and still is the most problematic area although there has been tremendous improvement. Originally, the only information given about the liver was “Nearly the entire liver is involved with hepatic metastatic disease with mean SUVs ranging up to 16.0”. It also stated that the impression was “extensive metastasis to the liver”. The second report, in January ‘09 stated there was “decreased metastatic disease” with mean SUVs of 6.6. It reported “dramatic interval improvement but that residual disease remains”. By May of this year the SUV was down to 4.7 noting that some of it may be related to “body habitus” which I believe means that my body may be predisposed to hypermetabolic liver activity. It stated that “residual disease cannot be ruled out”. With the most recent scan SUV was down to 4.2 and the report stated that it is “likely related to the patient’s body habitus”. The dimensions of the lesions cannot be determined due to irregular borders but the overall impression was “decreased as compared to the prior study” and that metastatic metabolic activity “could not be excluded”. On my last blood test, taken on August 17th, I noticed there was a reading given for CEA (carcinoembryonic antigen) which had never been reported before. CEA is a protein that appears in the blood of patients with some forms of cancer. My understanding is that it is not reliable for esophageal cancer so not given too much attention. That being said, Dr. George told me something I did not know. When I was originally diagnosed, a blood test was done in the hospital and the CEA was over 2,000. With the August 17th test it was down to 3.7. Normal should be less than 5 for a smoker and less than 2.5 for a non-smoker. I did smoke more than 24 years ago so I don’t know if I’m considered a smoker or a non-smoker but either way it’s a dramatic improvement, reliable or not. The blood tests done with each treatment also continue to indicate good liver function. For other patients who may want to know and as reminder since I’ve given this information before, the drugs I receive are taxotere, cisplatin, and 5FU. The 5FU is “boosted” by fusilev, a substitute for leucovorin. Needless to say the results have been good for which I am extremely grateful and pleased. But I am still realistic. I know that I am not cured. This disease does not go away. It’s very difficult to get Dr. George to say anything negative but she did acknowledge that the cancer is likely to flare up again. She said that was not likely to happen in the next three months. Is that encouraging? I interpolated “that sounds like it is likely to occur within the next year” and she reluctantly agreed. But many patients do not respond to the chemotherapy. I have. Many do not survive more than several months with my kind of diagnosis. I have. Remember that long term survival would be a true miracle. But I also realize that the miracle, if it is to occur, will include improvement of the type I have been blessed with. Treatments will continue with 3 week cycles for now. That seems to be a happy medium between fighting the disease and minimizing side effects. Thank you for all the prayers. I truly believe they are helping. Carry on. I will. __________________________________________

Brief Update

This morning I had a PET scan so I'm feeling a little radioactive. I'll get the results next week when I go for treatment. I suppose I could call the doctor prior to that but I'm content to just wait. Besides, I've figured out a way to beat this disease. I've decided to take up a few new hobbies, sky diving, mountain climbing and jousting. I have resolved to never drive slower than 90 miles per hour on the Parkway or Turnpike. I just got a new job as a bungee cord tester. That's my plan..... to die from something other than esophageal cancer. Then I will have beaten it. Carry on. ____________________________________________

Happy Birthday!

Today Terry became a grandmother. Her daughter Tara gave birth to Jake Connor. Terry will be leaving for Florida on Monday to be with them. That was supposed to be before the baby came but Jake decided to appear two weeks early. Terry cried when she got the news. It was nice to see tears of joy. For the record, that does NOT make me a grandfather. Stepfather, second marriage, several states away doesn’t count. Today was also my daughter Heather’s birthday. Happy birthday Jake. Happy birthday Heather. Today we celebrate life. ____________________________________

Something Is Happening

One of the realities of adenocarcinoma is that it does not go away. Physically it is a very aggressive form of cancer and even if brought under control, it can rear it’s ugly head at any time, and usually does. And it doesn’t go away mentally either. Regardless of how positive and optimistic you try to be the negative thoughts have a way of sneaking in. Lately I’ve noticed that my side effects from chemo are lessening. The neuropathy seems to be getting better. I’ve gotten some taste buds back. My nails a growing back and I even have some hair growing back. It all sounds nice and to some extent it is. But I can’t help but worry that it may mean that the chemo is no longer as effective as it was and the cancer is coming back too. Tomorrow I go in for another treatment and I’ll see Dr. George. Certainly I’ll talk to her about this. I think she’ll be trying to schedule another PET scan soon so that may tell the story. In the meantime we’ll carry on. __________________________________

Blah, Blah, Blah

Well there’s nothing going on medically so you get to hear more of what’s going on inside my head. Lucky you. Today I had the pleasure of visiting the NJ Motor Vehicle Commission. I could have conducted my business through the mail and I knew it would be crowded on a Saturday morning but I had no choice because I was too stupid to renew my registration before it expired. The place was packed. There were about 75 people in 5 lines. There were another 100 or so sitting and waiting. I didn’t see a single smiling face. The receptionists (yes apparently it takes two people to tell someone which line to get in) told me to go to line #1 which was all the way at the end. I had to navigate my way through all the other people to get to the other end of the building. As I made my final approach to the proper position I noticed the sign read “Registration Express” and there were only 5 people in front of me. I thought I was getting lucky. Silly me. There was no clerk behind the counter at window #1. My limit for standing is about ten minutes before I start to get weak and it looked like I was going to use up that ten minutes while clerk #1 took her break. As I stood in line I couldn’t help but think how inefficient government is at running anything. If this had been a private enterprise people would have walked out. In fact, the situation usually doesn’t exist with private enterprise because business people know that if they don’t serve the people better the people will go somewhere else. We have no choice when government is in charge. As I stood there getting weaker I couldn’t help but think “this is what they want to do with our health care”. I won’t harp on it too long but suffice it to say I’m not in favor of what’s being discussed in Washington. I’ll be the first to agree that there are problems with health care in this country but the “solution” being proposed is not a solution at all. The major problem with health care is the cost. I would be in favor of certain measures to control the cost such as tort reform but our leaders are not suggesting anything to control the cost. Their answer is to force someone to bear that cost, namely businesses and higher income earners. That’s not controlling the cost. It’s controlling the people. There’s no difference between what’s being proposed and passing a law that declares people’s mortgage payments are high now so to fix it we will make their employer pay it. For people who are not employed we’ll make rich people pay. And I don’t want to have to wait in line for my health care. When I left there was a talk show on the car radio. A caller told the story of her brother-in-law in England who was told he had a life threatening heart condition that required surgery. He was then told he had to wait six months for the surgery. Point made. After the NJMVC I had to go see a woman on business. I had never met her before. Upon arrival at her home it was obvious to me that this was the home of a handicapped person. It turns out the woman has no legs. It made me appreciate the fact that I’m alive and functioning even more. I used to have a friend named Vanessa who believed in reincarnation. She believed that when we die we are sent back to this world over and over again until we “get it right”. When we finally learn all of the important lessons God wants us to learn in life we are ready for Heaven and no longer reincarnated. I don’t believe in reincarnation but the concept of “getting it right” before we go to Heaven makes a lot of sense to me. After all, everyone in Heaven must be a good person right? I think I have learned a lot of life’s lessons lately. Many of them I have learned too late for life. Hopefully I’m ready for Heaven. This evening I read about another fellow warrior who has died from this disease after 13 months. His name was Jimmy. Please pray for him and his family. Carry on. --------------------------------------------------

WOW!

Last week I received a letter from Kris who is Terry’s cousin’s wife. This is a lady whom I’ve only known for about the past 10 years and only see occasionally. In fact she and her husband moved to Arizona about three years ago and we’ve only seen her twice since then. Kris told me that she has been following my blog and that it inspired her to reconnect with her faith. She said that she started praying for Terry and I, putting us at the top of her list. But she did not feel like she was doing enough. One day she was cleaning out a night stand drawer a found an old pair of Rosary beads. She decided that she was going to say the Rosary every day for us. But then she realized that she had forgotten how to say the Rosary, which beads were Hail Maries, which were Our Fathers, and what was said for the middle bead and Crucifix section. She was ashamed. The next day Kris went to the store and when she stepped out of her car she noticed a blue piece of paper leaning against the curb. It was in pristine condition, not rained on, nor wrinkled nor dirty. She said it was as if it had been placed there. She picked it up, looked at it, and started to cry. It was a pamphlet entitled “How to Say the Rosary”. Kris said the Rosary now feels like an old friend and she’s been saying it for us ever since. Kris’s letter really moved me. To know that someone is praying so hard for us is truly a blessing. And Kris is praying for Terry as well as me. That’s a beautiful thing. But then add the fact the a little miracle helped her to do that is amazing. It’s as if God was saying “keep those prayers coming”. That has to mean that the prayers are doing some good. When I read Kris’s letter it brought tears to my eyes and to Terry’s. Kris pointed out that little miracles lead to bigger miracles and she said to “Keep the faith”. She has bolstered mine. Wow, thank you Kris. Today, before treatment, I had breakfast with Denis, my friend from Georgia who was in the area to visit his parents. When Terry and I visited Denis and his family in April they hosted a barbeque. One of the guests was their friend Jim. Jim and I were talking and he indicated that he was due for a colonoscopy. I gave him my lecture about having an endoscopy done at the same time and urged him to do so. Today Denis told me that Jim did have the endoscopy as a result of our conversation. They discovered he had Barrett’s Esophagus, a condition that often leads to esophageal cancer. He will now be monitored so that if it does they will catch it early. There are also treatments and diet changes he can make that may help. Wow! It is very satisfying to know that I made a difference. Last week my daughter Heather spent her vacation time volunteering as a counselor at a camp for children with cancer. As I mentioned in a previous post she does not do these things because of me. She was doing them long before I was diagnosed. There are many good people in the world and Heather is one of them. I’m a proud father. Last week, my third week without chemo, I felt good and regained some energy. Nothing great; in fact it was the way I used to feel with only one week off. That’s the cumulative nature of the toxins. But it was nice. The taste buds didn’t come back until very late that week and then only slightly so McDonalds didn’t get the windfall sales they might have. My apologies to anyone who bought the stock. Dr. George put me back on a three week cycle so this time I’ll only have two chemo free weeks. The Chemo Kaiser has stuck again. Carry on. -----------------------------------------------------------------------------------

Thank You.......and Buy Stock in McDonalds

I just read about a man who was diagnosed with stage 4 esophageal cancer in September ‘08, the same as me. He began chemo in October ‘08, the same as me. He was just told that his cancer has spread, the tumors have doubled in size, and there is nothing else that can be done for him; not the same as me. You see, I am one of the lucky ones. Sure, mine will probably come back with a vengeance sooner or later but I have been blessed so far. Blessed with a body that has responded well to the treatments. Blessed with more time than a lot of people in my situation get. Blessed with a support network that makes that time worth living and fighting for. Last week, following my little depression, my daughter Heather and her boyfriend and my son AJ and his girlfriend all came for dinner. We hung around the pool until it got dark and then made a fire and hung around some more. I was able to talk Terry into just letting us order take out so she was able to spend more time relaxing and chatting rather than playing hostess. It was definitely quality time. The next day Terry and I joined our friends Linda, Phil and Taryn for a brief excursion to the Delaware water gap. Today we went to my mother’s and spent a lovely day with her and her companion and my sister and her husband. So you see, just when I was feeling down my support team jumped in and pulled me out of it. Yesterday Terry and I were hanging by the pool and I couldn’t help feeling a tremendous sense of gratitude that I am still here to enjoy it. I really didn’t think I would be when this all started. Thank you to everyone in my support network, family, friends, strangers who take the time to email me or post a comment on my blog and strangers who write about their own personal battles which helps me with mine. You all have done more than you can know to help me through this. Thank you for all the prayers. They’re working. Next week will be my third consecutive chemo free week, more than I have ever had since beginning treatments. I’m curious to see if I get any taste buds back. If I do I’ll be spending the week at McDonalds. I know it’s junk food but I’ve been eating way too healthy lately. It’s not good for me. If the buds reappear McDonalds stock is sure to go up. Carry on. ----------------------------------------------------------------- 　

From My Heart

Bummer alert! Don’t read any further if you don’t feel like reading some negativity. Sometimes I’m reluctant to post anything that sounds too negative. But my intent when I started this blog was to let people know, especially people who may be facing a similar battle, what it’s like. There is certainly a negative aspect to it so I have to share some of that sometimes. Recently I received an email from Peggy, a friend I met through my children’s grammar school. Actually that’s one of the bright sides of my situation. I get to hear from a lot of friends I haven’t heard from in a long time. Don’t anyone judge these people for not getting in touch until a time like this. I’m just as guilty for not staying in touch over the years. And if you think it’s wrong, reach out and touch one of your old friends before you or they get sick. And besides, it’s great to hear from these people regardless of the circumstances. Peggy made a comment about how well I was handling things. Well I don’t know about that. Let me give you some examples of how poorly I handle things at times. Thursday I was staining a couple of wooden steps on the patio. Shortly into the project I kicked over the can of stain. I did a good job, making sure I kicked it off the drop cloth I had underneath it. It spilled onto the patio. I didn’t jump up and quickly start to clean it up which would be the normal reaction. Instead, I sat there and cried. I cried because it seems I can’t do anything right anymore. I make a lot of mistakes, both physical and mental. Most of the physical mistakes involve my hands which are losing dexterity from the neuropathy. The mental ones are probably because of chemo brain. But it doesn’t matter what the cause is. I feel like an old man and it gets frustrating. It caught up to me Thursday. I often think about my own death. I’m not presumptuous enough to think anyone will miss me. But I’ll miss them. And I know my dog will miss me. And he won’t understand. He’ll think I abandoned him and that makes me sad. I worry about my wife. I don’t think she’ll be able to take care of everything around the house and yard. I worry about whether or not she’ll have enough money. I worry about my children. When I got married and bought a house I got a lot of help from my father, my stepfather, and my father in law. I want to be there to help my children and I don’t think I will be. I worry about my mother. I saw my grandfather bury my father. A parent should not have to bury a child. I read a lot about other people who have esophageal cancer. There’s a lot of suffering and a lot of death. Many patients achieve a state of remission only to be knocked down again by a recurrence. That’s why it’s hard for me to get too optimistic about apparent progress. I don’t expect it to last. Often there are contributions from someone who has lost a loved one to the disease. They describe the final days or the death. I picture myself there. I often think about my life achievements. It’s a very short thought process. It bothers me that I haven’t accomplished much. I’m scared. I’m more afraid of dying than I am of death. Very early in my illness I received a gift from Terry, another friend I met through my children’s grammar school. Terry sent me holy water, blessed with a relic of St. Albert of Sicily. Use of the holy water is believed to have healing qualities. I’m not sure if Terry knew it or not but my real name is Albert. Jerry comes from my middle name, Jerome. I have been using the holy water and I have read about the life of St. Albert. One of the things that Albert taught about death was that sooner or later we must give back to God all of the blessings that He has given us. We can give them back to God while we are living, by passing them on to others. But when we die all that are left go back to Him. I have many to give back. I’m going to try to give them back before I die. My faith makes it easier to accept death. But my faith is not perfect. I don’t want to die.

Medical Update

Yesterday I completed my 17th round of chemo. The last cycle was a three week cycle, a week longer than the previous routine. That gave me two weeks free after the treatment week. I must say I enjoyed the extra week. I had more energy and utilized it well. It was the most productive week I’ve had in a long time although I still function like an old man. But that’s not a complaint. I’ll be happy to get older. Unfortunately my neuropathy has been getting worse. When I bend my neck forward I can feel a jolt in my toes. I know it’s weird but the chemo screws around with the nervous system. When I described this to Dr. George she was concerned. She said the toxins were building up in my system. She immediately said to go four weeks with this next cycle. Although I look forward to the time off I’m concerned that the extra time will allow the cancer to thrive more. I’m also concerned about the neuropathy. I guess it’s all part of the balancing act. It’s all part of the cruise. Dr. George informed me that I tested positive for the HER2 gene. Actually I think my tumors tested positive. Way to go tumors! This means that if at some point in the future we need another weapon we may get results from Herceptin, a drug that has been somewhat successful for breast cancer and shows some positive signs for fighting gastric cancers. Each time I have a chemo treatment they do a blood test that monitors, among other things, liver function. I’m happy to report that my liver is hanging in there after being seriously compromised before treatments began. I love my liver. I had a brief scare. After working in the yard during my extra week off I thought I had picked up a deer tick on my arm. I’m no expert but to me it looked like the textbook example of a deer tick. You can see a picture of it on my arm by clicking below. Click here to see the deer tick on my arm Dr. George confirmed that it was in fact a deer tick. Thankfully it was easily removed. Carry on. -------------------------------------------------------------------

Some Philosophy

OK get ready for some deep thinking and some words of wisdom. Some of it comes from me and some of it from others who have touched me. First of all, I know there are some people who think I, and perhaps others in my situation, are guilty of hypocrisy or at least some disingenuousness. Guilty because of a new found love and respect for God, family, friends and life in general. These people think that we have these feelings only because we are facing death and were it not for that we’d continue looking at things the same way we did before. These people are probably right. But I have two things to say to these people. First, wouldn’t I be even less of a person if I didn’t reflect back? What kind of a person would I be if I didn’t try to improve relationships and appreciate whatever time I have left? Secondly, if you think I am hypocritical or disingenuous consider it an excellent opportunity for you to look back on your own relationships. Try to improve them where necessary and try to appreciate life now, before you are facing death. This is your opportunity not to be guilty of the same thing. Jonathan, another EC patient said to me “ I suspect the threat of imminent death sort of kicks us in the ass and gives us either dynamic insight into the real values of life or simply consumes us with fear.” I choose the former. Living with a disease that will eventually kill you is tough. It’s a constant balancing act between facing reality and trying to live life to the fullest; between not wanting the chemo that is destroying my body yet needing it to stay alive. There is a remarkable lady named Marny whose husband Dale died of esophageal cancer several years ago. Since then she continues to support those of us still fighting and to spread the word to people who may be at risk. She said something very important about the disease. She said “give it respect, not power.” That is the balance I strive to achieve. I get a lot of good advise from fellow warriors. Lois, whose husband Richard is also a patient said “Forget about statistics, cure rates, stages of cancer. Our lives are in the present and however long they may last, they are a priceless gift of time to be used immediately and carefully to the fullest. Use each day wisely and be thankful for the gift.” Very good advise indeed. Les, a patient who has been through 91 chemo cycles, shared a lot of wisdom recently. Les refers to the balancing act as “life in the middle ground”. He said “Although EC remains a deadly threat at all times, except when I am actively getting chemo, EC has little or no impact on my life……If I let this rob me of my life, it would be a personal tragedy. I feel optimistic that I will have more good days in abundance. I never have and never will allow the fear that a future diagnosis will indicate that EC has begun its final march. Even if this happens in the near future, I can look back on many wonderful days that I would not have had if I hadn't been willing to live in the middle ground”. As you can see this is an amazing club I am a member of. None of us wanted to join but now that we’ve been forced to we are glad it’s here and we appreciate the members. I want to end with my favorite quote. It’s from Mandy whose husband Travis is yet another patient. Mandy said “My future is as bright as my faith”. I believe. _____________________________________________

Friends, Friends, Friends... And My Best Friend

In my last post I mentioned that I didn’t like the words “quality of life”. That’s because when someone, particularly a doctor, talks to a cancer patient about quality of life s/he is really saying “enjoy it while you can because you don’t have much left.” Although I don’t like hearing “quality of life” I sure do like experiencing it. And I got more of it over the past few days. On Friday we were visited by Carol and Denis, our friends from Georgia. They were joined by Dina, another friend whom we haven’t seen for too long. It was an awesome night. We thoroughly enjoyed the visit. Today we had lunch with our friends Bruce and Rhonda. Bruce and I go way back although we don’t see each other often enough. Bruce and I have always been able to talk; about important things and unimportant things. That hasn’t changed. Rhonda, whom I haven’t known as well or for as long, is the perfect conversationalist and as I mentioned in a previous post she is a great person. I’ve come to realize that these special visits with friends we don’t see often tend to stand out and I write about them. I tend to overlook the “day to day” routine encounters with friends that are around all the time. That’s not right. They are very special too. We see our friends Linda and Phil fairly often and enjoy our time with them immensely. Their kids are great too and often we’ll all be together just enjoying the company. Once a month I get to enjoy poker night with seven good friends. I have been playing with some of them for more than 25 years. All of them are great guys and I look forward to our games as well as seeing some of them away from the poker table from time to time. We live in a great neighborhood. Everyone on the street is a friend and we see them regularly. Sadly we just lost Bob who has been a friend since I moved here more than 30 years ago. There's my good friend Vince who I see and speak to regularly. He is a lot like me, has a great sense of humor, and brightens my days often. And where would I be without my best friend…. Trrrrr? That’s Terry for those of you who don’t know us well. Not only does she give me daily quality of life, she also makes the special occasions special. When people come to visit, my suggestion that we keep it simple and order pizzas doesn’t cut it. Terry prepares a nice dinner, even baking the dessert, not to mention the cleaning before and after. She has contributed special dishes when it’s my turn to host the poker game. In a couple of weeks she’ll host a birthday party for Linda. She goes out of her way to make these occasions enjoyable for me. I’m going to keep suggesting the pizza because I’d like more people to come visit and I don’t want to burden Trrrrr but I probably won’t win out. Cherish your friends. I do. ----------------------------------------------------------------

Experimental Drugs and Clinical Trials

As I write this I am on the pump. Yesterday was the big chemo day. Tomorrow is hydration and “get off the pump” day. Then two whole weeks off!!! This begins the three week cycles for a while, an attempt to balance life and quality of life. By the way, “quality of life” is one of two terms/phrases that I (and I suspect many other cancer patients) hate to hear. The other one is “palliative”. Yesterday Dr. George discussed a new drug that may be useful in my treatment. I had read about it earlier but didn’t pay too much attention to it because it’s use for esophageal cancer is experimental. It’s called Herceptin and has proven to be effective in the treatment of breast cancer, but only in tumors that contain a gene called the HER2 gene. It is approved by the FDA for that use. Recent studies indicate that it may also be effective in treating gastro intestinal cancers that test positive for the HER2 gene. So Dr. George ordered my previous biopsy sample to be tested for the HER2 gene. If the gene is present, and I think it has to be abundantly present, Herceptin may be helpful. It is not a miracle drug. Dr. George just wants to know if it is something available to us down the road if we need it. It would be another weapon in the arsenal. And that’s assuming the insurance company would pay for it because its use in gastro intestinal cancer treatment is considered “off label” since it is not yet approved for that purpose. One of the major attractions of this drug is that there a very few side effects because it is an anti-body. The big drawback is that if I used it I would grow breasts. Just kidding about that last part. I am pleased to announce that I am involved in a clinical trial. As a matter of fact I am conducting the trial myself. It is a phase I trial designed to determine the affects of 5FU on mosquitoes and gnats. I sit outside and let the bugs swarm around me yelling “go ahead, make my day”. After they bite I try to keep an eye on them to see how long they survive, counting the seconds….. 1, 2, 3, 4, 5, FU!!! I’m just trying to do my part for science. Carry on. ----------------------------------------------------

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

A BIT OF A BUMMER

I try to maintain a positive attitude while still being realistic about my situation. But the attitude is suffering a bit lately so if you‘re looking for an upbeat post you may want to skip this one. I apologize. Last weekend I had a great time in Atlantic City with my good friend Vince. I could have been a little embarrassed at the poker table because I was not able to properly handle the cards or chips due to my dry fingers and fragile fingernails. If you’ve ever watched poker on television you may have seen some of the players doing chip tricks at the table. How’s this for a trick - start to take your chips out of the rack and send them shooting across the table and onto the floor? Things like that along with almost constant tears could have gotten me down but it didn’t. Vince stacked my chips for me whenever we were at the same table and when we weren’t I didn’t care. I was having fun and I was feeling great. When I got home on Sunday Terry and I attended our grand nephew’s (I think that’s the relationship) baseball game. After the game he, our niece and her husband and in-laws all came back to our house for pizza. It was another weekend for the “Happy Times With Cancer” list. I was feeling so good that weekend that I decided to go to the chemo lounge on Monday to let them knock the hell out of me. And they did. It’s been a week now since that treatment and I’ve never felt this weak so long after a treatment. This weekend immediately passed I tried to take advantage of the warm weather by doing some yard work. I couldn’t even stand up for more than 15 minutes let alone exert myself. This is the cumulative affect of the chemo. There is some tiredness, particularly in the early part of the cycle. But it’s the lack of energy, strength and stamina that is the most frustrating. I can’t do much except activities that don’t require I get up from the chair. I guess it’s to be expected. Take a look at the two pictures at the following link. The first picture is of the IV pump and a second infusion pump. Both of these are putting stuff into me while I am taking the picture. The second picture is what’s waiting to be pumped into me. Chemo Pictures What you see in the pictures does not include the 5fu which is pumped into me through a portable pump for the next 48 hours. When you consider all those chemicals going into my body it’s easy to see why my body reacts negatively. It’s easy to see why I pee so much. Perhaps it’s the mental reaction to the physical stress or perhaps it’s a normal part of the process or perhaps I’m just a wimp but whatever is causing it I’m getting depressed lately. Yes, I’m depressed about not having more energy but it’s more than that. I feel like this is never going to end. I feel like I can’t take much more of it. I find myself thinking about my own funeral, and yes, it makes me cry. I find myself wondering if anyone will miss me. Anyone that is besides my dog Oscar. But I’ve noticed lately that Oscar and Terry seem to be bonding more. Then I think that they’re both preparing to live without me. I cry by myself a lot lately. If I get caught I can blame it on the blocked tear ducts. I’m sorry for the negativity. There is a positive. If you were to give me the choice of living only six more months with the improved relationship I’ve enjoyed with my two children and my mother over the last six months or living another ten years without those relationships, I’d take the six months. Something is going to change soon. Next week I’m scheduled for another PET scan. Maybe I’ll get lucky and the results will be good enough to allow me to back off some of the chemo. If not I may keep getting weaker to the point I’m forced to back off. I still have some fight left in me so I’m going to try not to let it be the latter. I scheduled myself for an extra hydration session tomorrow. Maybe that will help with the weakness. Either way I’ll carry on. -------------------------------------------------------------------

HEROES AND WARRIORS

I recently received an email from a lady who has been reading my blog. Her name is Rolinda. She told me that her father died from esophageal cancer on Sept. 12, 2008. She said she feels a bond to anyone who is fighting this disease. Two things struck me about what Rolinda said. First the bond that she feels. It shows you how cancer affects loved ones. They fight the battle along side their loved one but the enemy is the disease. And that enemy doesn’t go away when their personal battle is over. Rolinda recognizes that there are many more soldiers left fighting. Secondly, it struck me that Rolinda’s father’s battle ended right about the time that mine began. In fact it was on the very day I was getting the telltale CAT scan. When I read that part of Rolinda’s email it felt like a passing of the torch. So I am now determined to fight this battle in the memory and honor of Rolinda’s father, Richard Martin. Every warrior needs encouragement and inspiration. Much of mine comes from Mark Richardson. Mark was diagnosed with esophageal cancer in 2005. His was the same type as mine, adenocarcinoma, and he was also at stage IV. He was given 3 months to live. Mark has fought this battle hard and has been very successful. Take a look at the two pictures at this link: Mark’s pictures The 2005 picture was taken while was undergoing treatment, shortly after being diagnosed. The 2009 picture was taken recently. The difference is stunning. Needless to say Mark has defied the odds and far outlived the prognosis he was given. Mark is not cured. There is no cure for this disease we share. But if I can be doing as well as Mark 4 years from now I’ll be very grateful. Mark’s mother Betty has blogged his entire story. You can find it through the link on the right side of this page. Richard and Mark are heroes of inspiration to me. Rolinda and Betty are fellow warriors, fighting this battle by bringing their heroes’ stories to people like me who benefit so much from it. Carry on Mark. Carry on Betty. Carry on Rolinda. Rest in peace Richard. ----------------------------------------

THE ACORN DOES FALL FAR FROM THE TREE......AND THE TREE

My daughter Heather just secured a volunteer position. She will spend a week this summer as an artistic therapist/counselor at a place called Happiness is Camping, a camp for children with cancer. She’ll be giving up a week of her vacation time to help children who are facing this monster. You might think that Heather is doing this because of my situation but this is not the case. Long before I was diagnosed she felt a calling to work with children afflicted with this disease. She has been a crusader for other cancer causes as well including walkathons for the American Cancer Society and volunteering as a “chemo angel”. She has done these things because of the goodness that is in her heart. She is a better person than I am. She is the acorn that has fallen far from the tree. Thank you Heather for all you do to help fight my battle and the war against cancer. Speaking of trees, on Saturday Terry came to me and asked “have you seen the tree?” I knew immediately which tree she was referring to. Last summer she and I planted a cherry tree to replace some shrubbery we dug up. “Is it blooming?” I asked. I was practically out the door as she responded yes. Sure enough, the pinkish-white flowers were adorning this scrawny little mass of twigs. It immediately hit me as a symbol of hope. It is a sign of Spring, which leads to the warm weather I’ve been waiting for. It survived the winter, as did I. Click here to see the acorn and the tree Last week I had my 12th treatment. I can definitely feel the cumulative affects, mostly a little more fatigue and weakness each time. But that's a small price to pay. Spring is here. Life is good. Cancer sucks. Carry on. -----------------------------------------------------------

LET THE GOOD TIMES ROLL

As I begin writing this I am sitting in the chair at the chemo lounge. To my left is a patient whose veins are collapsing from so many IV treatments. He will have to have a portacath implanted. His blood oxygen level is low so he may need oxygen. To my right is a patient who is being given a prescription for morphine to replace the oxycontin he had been taken. I’m not sure, but this sounds like serious pain management to me. Also, he has lost a lot of weight since I first saw him. I’m worried about him. There’s already been one fellow whom I became friendly with at the lounge that has passed away. All of this supports what I wrote about in my last post. No matter how bad things seem there’s always people who have it worse. Here’s another thing. If you look at the right side of the page, under “THINGS OF IMPORTANCE TO ME”, you will see links for “Happy Times With Cancer” and “Sad Times With Cancer”. There are far more happy times than sad times. Last week I was able to add another happy time. While I was taking extra time off from chemo we took a trip down to Atlanta to visit friends. What a great time we had. Denis and Carol were the perfect hosts. We took a tour of Coca Cola headquarters and saw the new Atlanta Aquarium on Friday. On Saturday, with perfect weather, we summited Stone Mountain. OK, it’s not very high and we took the cable car up but we did reach the summit. It may be that I’m just more aware of it now but it seems that there is a lot of cancer around. Denis was recently diagnosed with prostate cancer and his father is fighting bladder cancer. I accompanied Denis to his radiation treatment. We were Cancer Comrades. Denis delayed telling me about his diagnosis. He felt that it was insignificant compared to mine. It is true that his prognosis is better than mine but it is serious nonetheless. I pray for him and his father and hopefully you will too. Denis is one of a small group of men whom I both enjoy and respect. On Saturday Carol put together a very nice cook out which was attended by all of their children, their son’s wife, their daughter’s boyfriend, their grandchildren and some friends. It always amazes me to see children I have known since they were very young mature into fine adults. This gathering of great people firmed up a life lesson I’ve been slowly learning. Good people usually have good families and good friends. I’ve added that to my list of “Important Lessons I’ve learned in Life”. I’m trying something new with today’s post. Pictures. I don’t want to embed them in the post because if I keep doing that it will take a long time for the pages to load. Instead you can see pictures associated with this post by clicking this link: Atlanta Pictures I had hoped that the extra week off from chemo would provide me with superman energy and some extra taste buds. It did not. But I still feel better than a many other patients so I can’t complain. Today the oncologist submitted a request for insurance company approval of another PET scan. If it’s approved I’ll soon be suffering from scanxiety, the fear of what the results will show. Carry on.

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I'M ONE OF THE LUCKY ONES

I read everything I can find on the internet about my disease. I have pretty much garnered all of the knowledge I can from the information sites. I stopped reading those a long time ago but keep an eye on them in case there are any new developments. What I read a lot of now are blogs and bulletin boards where patients, caregivers or loved ones write about their ordeal. I have come to realize that I am one of the lucky ones. Here’s some of the problems that esophageal cancer patients go through that I have been spared. Although stage 4 patients usually don’t have the option, stage 1, 2 and 3 patients often undergo surgery. Some choose not to, and there’s good reasons why. It is extremely radical surgery. The procedure obviously involves removing some or all of the esophagus. Then the stomach has to be pulled up, between the lungs, and reconnected to what remains of the esophagus. This is very painful and the pain never goes away for some people. Often some or all of the stomach is also removed. The patient is then left with a partial stomach or no stomach at all. Eating is never the same after that. It never returns to normal. Only very limited amounts can be eaten. Many foods cannot be tolerated. There can be frequent “dumping” of the stomach contents. There can be leaks where the stomach and esophagus are rejoined. Often the patient cannot sleep in a reclined position because of reflux. Post-op recovery usually requires weeks in the hospital. Surgery patients usually require chemotherapy and/or radiation in addition to the surgery so they suffer through that as well. I have read about many patients who go through all of this and then die. Many patients have a tumor that obstructs the esophagus making swallowing very difficult if not impossible. They can’t eat. Some undergo a dilation procedure to stretch the esophagus. Some must have a stent implanted to keep it stretched out. For others it is worse and they must have a feeding tube implanted. The tube goes through the abdomen into the stomach or the intestine. Nourishment is then obtained through liquids. A feeding tube is also frequently used for the surgery patients whose new digestive system doesn’t tolerate swallowed foods. For some, the tube is temporary. For some it is permanent. Some patients develop neuropathy from chemotherapy. This is a nerve condition results in tingling, cold sensations and pain in the extremities. Some patients have such a bad reaction to chemotherapy that they must stop. I have been fortunate enough to avoid everything above but it’s important that anyone facing this disease knows where I’m coming from. If I had to make a decision about any kind of treatment I would probably choose to go through with it, even knowing how difficult it would be. You have to fight this with every weapon available. I’m just thankful it hasn’t been as tough on me as it has been on some people. Please pray for all of those patients who have not been as fortunate as me. Not much to report medically except that my blood test shows that my liver is hanging in there. I love my liver. The last treatment I had began on Monday, March 16th. Normally I would start another round on Monday, March 30th, but not this time!!! I’ll be taking an extra week off from chemo, hopefully to keep the cancer from getting “smart” (developing a resistance to the chemo) and to build some strength. I’m anxious to see how I feel with the extra time off. Life is good. So we carry on. ------------------------------------

PLEASE PRAY FOR MY ANGEL

Sister Sylvia, the angel I wrote about in the January 16 post needs prayers. Please be as generous with them for her as you have been for me. Thank you.

THE FATHERS AND THE SONS

I’m not sure if I have written about this before but several days after my first chemo treatment I experienced severe hiccups. At first I thought it was an after effect of the anesthesia from surgery I had just undergone to implant the portacath. Since then I have experienced hiccups several more times after treatment so it was probably not from the anesthesia. Anyway, I hate hiccups. I always did. They hurt me. And these hiccups were relentless. They ended up lasting about four days and I was really suffering from them. On the third night they were so bad that I couldn’t fall asleep. I had gotten very little sleep the previous couple of nights, I was hurting from the hiccups, hurting from the surgery, and feeling the effects of the chemo treatment. I was still feeling the symptoms I had before starting treatment. I have said that I don’t think it is right to pray for one’s self and I believe that. But I was feeling so bad I violated my own belief and I asked God to help me fall asleep. I needed relief. I don’t want this to sound like I had a vision. I did not. But I did form an image in my own mind, intentionally. I imagined my father walking toward me. He was being escorted by Jesus who was holding his hand. Jesus brought my father to me. My father sat down. I laid down and put my head in my father’s lap as he held me. I fell asleep; for real. Relief. I should mention that I don’t remember ever being held or hugged by my father. He didn’t openly express his emotions and hugging between two men was not as common as it is today. So this image was very comforting to me. As I said this was an image that I concocted myself but I do believe that God helped put the image in my mind. It was as if God was sending His son to bring my father to his son, who needed him very badly. Last night I had a dream. I dreamt that I was climbing stairs. I kept climbing and climbing, going up higher and higher. When I got to the top my father was standing there. We hugged. That hug felt so good it seemed real to me. There is a lot of symbolism here. I ascended to a place where my father was waiting for me. I feel like hugging my son. ------------------------------------------

A WEEKEND TO BE THANKFUL FOR

What a weekend! On Saturday morning I went to let our dog Oscar outside as normal. But on this day something seemed to be beckoning me out there so I stepped out onto the patio. What a gorgeous day it was. It had to be close to 70 degrees. The sun was flooding the yard. I love a nice warm sun. I sat out there for a while just soaking it all in. I looked around the yard at the buds on the trees, the shrubs that would soon need my attention, a cherry tree that Terry and I planted last year that seems to have survived its first winter, and a nice big planter I built several years ago that is now waiting for my mother and I to fill it with marigolds. It was September-October last year when I was diagnosed and began treatments. Not only was the warm weather disappearing but I was in no condition to enjoy what little was left. Frankly, I didn’t think I was going to be given a chance to enjoy it again. This was the first time I was absorbing the sun in what seems like a long, long time. So as I sat there bathing in this gift from God I really appreciated being alive and looked forward to the spring and summer. Later that day we were visited by my old friend Bruce and his wife Rhonda. Bruce and I were very close more than 25 years ago but drifted apart as often happens when lives take different turns. By the way, when I refer to Bruce as an “old” friend I mean it in both senses of the word. Holy crap Bruce you make me feel young. But he is in much better shape than me so kudos to him. Bruce and I talked like we had never left off. He brought pictures of his kids (and grand kids) who are now adults with careers and families of their own. I remember them as little children running around my house or Bruce’s as we and our wives were playing Hearts or Bruce and I were battling out a game of Chess or Mastermind. Bruce and I are both remarried now but I think the four of us connected nicely. Bruce and Rhonda are both retired now and both doing volunteer work. Rhonda is a hospice volunteer which makes her a very special person. I had to question Terry to make sure this wasn’t her way of sneaking hospice in for me. They brought lunch and made it a great day. On Sunday we were again visited by our friend Charles from Toronto. Charles and I go back a good 20 years. Charles was clever enough to recruit me to “help” him run the bingo program at our children’s school and then promptly moved to Canada leaving me to run bingo alone. Do you think I was set up? Charles is a compassionate intellectual with excellent social skills. This makes for great conversation and very enjoyable interaction. He is one of the finest men I know and his visit capped off the beautiful weekend. There’s not much to report medically. Last week I had my 10th chemo treatment along with the accompanying blood tests. The blood test results show that my liver is hanging in there and I’m still tolerating the treatments reasonably well . Next Monday I will get my 11th treatment and then I’m going to take an extra week off from chemo. Terry and I are going to take a short trip in that third week when I hope to be feeling better from the time off. Weekends like this last one make it very easy to carry on. So we do.

IT'S ALL PART OF THE CRUISE

My father had a saying whenever something unusual happened or something a little unpleasant occurred. He would say “It’s all part of the cruise” meaning it was part of the plan, it was meant to happen. I’ve been hearing that in my mind often lately. I’ve been depressed lately. It seems that with each chemo treatment the side effects last a little longer. Today it is a week since my last treatment began and I still am very low on energy and stamina. It used to last only a few days. I think I’m also starting to experience “chemo brain”, a phenomenon described by many cancer patients. It includes absent mindedness, dementia, lack of concentration and other brain failures. Recent studies have validated this with scientific explanation. In my case I’ve been making dumb mistakes at work and doing things like driving past my exit on the Parkway while looking at it and thinking “wow, that came up fast”. I even programmed the wrong address into my GPS and then let it take me in a totally different direction than I knew I should be going, thinking to myself, “well it’s probably taking me on the back roads”. So between the lack of energy, the chemo brain mimicking senility and other side effects like dry hands and fragile nails that limit my dexterity I feel like an old man. Then I start to think that may be appropriate since I’m probably close to the end of my life. I told you it was depressing. But then today I was reading a magazine and came across a photo of a piece of art. It was part of a collection of spiritual art. It said “This is part of his plan for me”. That’s the spiritual version of “It’s all part of the cruise”. Interesting that these two fathers of mine have both sent me a similar message at this time. I often wonder if some of the symptoms I experience are effects of the chemo or effects of the disease. When you are living with cancer every little pain or discomfort you feel makes you think the disease is spreading; not a pleasant thought. On the other hand, if the symptoms are from the chemo it means that they are cumulating and sooner or later I may not be able to tolerate them; also an unpleasant thought. Either way, these trials are out of my control. I take comfort in knowing that they are part of God’s plan for me. And of course it’s all part of the cruise. Does anyone know where the ship is going?