If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.

Wednesday, October 28, 2009

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. ___________________________________________

Wednesday, October 21, 2009

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

Thursday, October 15, 2009


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

Sunday, October 4, 2009

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. ___________________________________________