SOME GOOD NEWS

Here it is more than 4 months since my diagnosis and more than 3 months since beginning treatments. I have had 7 cycles of chemotherapy. Earlier this month I had the first PET scan since beginning treatment. It was compared to the scan done just before the treatments. The treatments are working well for now. The cancer can no longer be detected in the esophagus or the lymph nodes. The tumor in my lung has shrunk in size from 3.5cm to 2.0cm. It had a standardized uptake value (SUV) of 3.2 compared to 10.7 on the previous scan. The SUV is a measurement of how much of the radioactive dye is absorbed. Less is better. On the first scan, the radiologist reported that nearly the entire liver was involved with metastatic disease. SUV measured up to 16.0. On the report for the most recent scan the radiologist reported that there is disease remaining but there has been “dramatic interval improvement” . SUV only measured up to 6.6. So it was a very good result. There was improvement every place that cancer had previously been detected. It has not appeared anywhere else. That’s the best result we could ask for at this point. My cancer is not gone. It probably never will be. But for now it is under control and the longer we can keep it under control the longer I will live. My doctor often talks about “quality of life” which you really don’t want to hear because it actually means enjoy life while you can, you don’t have much left. But she’s right. Quality of life is important and right now mine is great thanks primarily to my wife but also to all of my family and friends. So we carry on.

A MIRACLE

While I was in the hospital recovering from the first round of chemo I believe I was the recipient of a miracle, sent through an angel. Some background: By the time I was diagnosed with cancer at age 52 and having gone through a divorce ten years earlier I had drifted away from my Church. I always missed it. There was a piece of me that was missing. I had always maintained my relationship with God but as I found myself getting closer to death I had a strong desire to get back to my Church. It was more than a strong desire. It was more like a craving to fill a very big void. But this would not be easy. I was very weak and barely able to stand up for more than a minute at a time. I had difficulty even speaking due to mouth sores from chemotherapy. On one of the days I was in the hospital, my ex-wife, whom I have no regular contact with but who knew of my situation through our children, ran into Sister Sylvia Berzinski from my parish. She told Sr. Sylvia that I had cancer and was hospitalized. That very same day Sister came to the hospital to see me. It is difficult to express how elated I was to see her. I literally felt at that moment that a tremendous problem had been lifted from me. At the time I thought it was the problem of finding a way back to my Church. It was that and that made me feel great but unknown to me at the time there was more to it. Something was happening that I didn’t notice at the time. My mother was in the hospital that day and she saw it. Here is her account of what happened. Do you believe in miracles? Or better still, do "I" believe in miracles? I don't think I actually ever did believe in them.....too factual a person I guess.......but I have changed my mind. My son Jerry, as you know, has cancer and my heart was broken to hear this news about him. But one day recently, my daughter Anne and I went to the hospital to visit him. His wife, Terry had taken him there the day before because she thought that he was in bad shape and needed him to be there for them to help him. When we walked into the room...........my heart sank. He was sitting in a lounge chair.....he could not walk or even stand up, He had multiple sores in his mouth (a side effect of the chemo treatments) and a sort of "slime" was oozing from his mouth. He had to keep spitting in a basin. As soon as he would spit, it would accumulate again and he would have to go through the same thing.........over and over again. He could not talk, He did try real hard but could only manage to point at things and try to get his point across to us. Right then and there, I thought......"This is it. I am going to lose my son and the time is now." I was fighting to hold back the tears because I did not want him to know how I felt inside. I had to leave to go to the ladie's room to "get my act together." Anne agreed with me that he looked and acted really bad. My heart was being ripped out of my body. But then ,,,,,,all of a sudden..............Sister Sylvia from St. Peter's Church, who has been a friend of Jerry and his family, walked through the door. Jerry stood up, threw his arms around her and said, "Oh, Sister, I am so glad to see you. Thank you so much for coming. I appreciate it so much. I am sooo glad to see you." as he hugged her. He just miraculously looked, felt and acted like he was better. Anne and I could not believe our eyes.....he went from practically being at death';s door to almost being better! I could not believe the change. We witnessed a miracle right there before our eyes! I felt almost like God had sent her to tell him to "hang in there," everything will be alright. Now the tears were streaming down my face again, but this time they were tears of joy. He could now talk and stand and walk and I felt the presence of God at that moment. He is still a sick young man but is now able to walk, talk, drive the car, take part in everyday activities and although he still gets side effects from the Chemo treatments, he has had so many "good days" since that day that Sister Sylvia came, like a messenger from God. So now ask me.....................Do I believe in Miracles? Oh yes And I thank you, God. As I look back on it my mother was right. There was a physical change in me as well as a spiritual one. I have felt better every day since the visit from Sr. Sylvia. I have tolerated the treatments since then. There has been significant improvement in my condition as measured medically. The day after I was released from the hospital Sr. Sylvia brought Monsignor Herb Tillyer, our pastor, to our home. They welcomed me back to my Church and made me feel as if I had never left. If I end up surviving this disease it will be a miracle and that miracle occurred when Sr. Sylvia came to visit. Even if I don’t survive, my remaining life has been miraculously improved both physically and spiritually since her visit. She is my angel.

LET THE TREATMENTS BEGIN

I began treatment on October 20, 2008, more than a month after diagnosis. That was too long in my opinion. Many people, including doctors, told me a month delay would not affect anything. I don’t buy that. If you find yourself in a similar situation ask your doctor if six months would make a difference. The doctor will likely answer yes. Then ask the doctor if that difference would occur on the 180th day or does it occur gradually over time. The answer is obvious. The sooner you get treatment the better your chance will be. The chemo routine my doctor prescribed consisted of two drugs administered at the chemo lounge over a 5-6 hour period. Most of the time is spent taking hydration fluid. You have to love the phrase “chemo lounge”. Would it be even more fun if they called it “chemo bar and grill” ? For those who are interested the two drugs are cisplatin and taxotere. At the end of this 5-6 hours they hook the infusion pump up to my portacath and send me home for two days. The drug being infused is called fluorouracil, also known as 5fu. 5fu is a very appropriate name for this drug because it screws you up 5 times over. It is very potent and virtually all of the side effects come from this drug. After two days on the pump I return to the “lounge” to be unhooked and receive more hydration. This is a 3-4 hour ordeal. This routine is repeated every 2 weeks. During the off week I would go back for a hydration session. I was anxious to start the treatments because it’s my only hope for survival. I really thought that I would be able to tolerate the chemo well for a number of reasons. I was told to expect to feel uncomfortable from the dyes they injected into me for the CT and PET scans. I felt nothing from either. I expected an adverse reaction from the anesthesia administered for the 2 surgeries. That didn’t happen. I was overweight so weight loss would not be an issue. Many people experience a loss of appetite. I didn’t think there was a drug or a disease in the world that could make me lose my appetite. So here I was, big, strong, and ready to handle this stuff. WRONG. After the first round of chemo I landed in the hospital. The 5fu FU’d me. I developed severe mucositis and mouth sores. This prevented me from eating and I could barely talk. I had a severe rash that prevented me from sitting comfortably. I felt lousy in general. And the problem that required hospitalization? A severe drop in my white blood count. This presents the risk of infection. It cripples the body’s immune system. It also prevents the other problems from healing. The symptom of this is a high temperature which I was warned to watch for. I wasn't watching closely enough. My wife Terry thought I looked pretty bad, took my temperature, and sure enough it was above the critical point. Had it not been for her I might have become infected with something. I had to be admitted to a private room to reduce the risk of becoming infected. I remained in the hospital for 3 days, receiving injections to boost the white blood count, fluids to keep hydrated, and general care to prevent infection and care for my ailments. During this stay I believe that a miracle occurred. Read the next post to see what I mean. Because of my severe adverse reaction to the first round of chemo Dr. George delayed the second round by a week. For round 2 she reduced the 5fu dosage by one half. I did better with round 2. Round 3 she increased it to three quarters and by round 4 she had it up to the full dosage again. I really appreciate the fact that Dr. George pushed me back up to the full dosage so quickly and did not baby me. I like I said, I made the decision to fight this fight with whatever was necessary. I did not want to go at it with partial doses. Dr. George felt I could handle it regardless of the initial reaction. She was right. There were several reasons I began tolerating the treatments better. First, with each treatment they were now giving me a shot of neulasta, a drug that boosts the white blood count. Nothing like downing “shots” at the ole “lounge”. Secondly, I was doing a number of things to prevent the mouth sores such as sucking ice cubes and using a prescribed mouth rinse. Lastly, and most importantly, with each treatment my liver function was improving. This was being picked up by the blood tests done with each treatment. As time went on my liver was working more efficiently to filter out the toxic effects of the chemo. This was also an indication the chemo was doing what it was supposed to do. A little bit of good news. By the third or fourth treatment the doctor introduced another drug, leucovorin, which is supposed to increase the absorption rate and/or the retention time of the 5fu. As luck would have it there is a nationwide shortage of leucovorin so they didn’t have any to give me after 2 doses. They have since substituted a drug called fusilev for the leucovorin but this is an “off label” use for fusilev which means that although it may do the trick it was not approved by the FDA for this purpose. I read that Spectrum Pharmaceuticals, the manufacturer, has applied for approval for this use. It is by the way a much more expensive drug than leucovorin which is a generic drug. Could this be why there’s a shortage of leucovorin? So now I was not only getting the full dose of 5fu that originally landed me in the hospital, but we were “boosting” it. And I was tolerating it fairly well. There were still some side effects, but they were all tolerable, at least so far. For anyone interested in the side effects look for the link under “Things That Are Important to Me” on the right side of this blog page. So after a stumbling start I was finally well underway with my treatment and it was going well. That was one of many blessings.

GETTING READY FOR TREATMENT

A lot of people had an opinion about what treatment I should pursue. Some, upon learning how slim my chances are, thought I should try some unconventional approach. Many had an opinion about where or by whom I should seek treatment. My philosophy is simple. I feel that if the unconventional approaches were truly successful they would become the convention. I’ll stick with the conventional. I did not want to burden my wife with trips into NY City or anywhere too far. I believe the doctor is more important than the facility. I chose to stay near home. I did not find any world renowned, cutting edge, highly successful oncologists near Parsippany NJ. I also considered money. The doctor and the facilities had to be part of my health insurance network. There was no way I was going to fight a long battle, one that I would probably lose, and leave my wife without money. I decided to go with Dr. Roshini George, an oncologist I had met in the hospital. I liked her. I felt comfortable with her. I was putting my faith in her. By this time my symptoms were getting worse. I was extremely fatigued. I had almost no energy or stamina. I experienced frequent low grade fevers which I learned were “tumor fevers”, the body trying to fight off the tumors like fighting infection. Anytime we went to the doctor’s office or a hospital Terry had to push me in a wheel chair. She was strong in more ways than one. I really thought that death was not far off. I was and still am realistic. I know my chances are not good. But I was and still am ready to fight as hard as I can. I will take the treatment, put up with side effects and do whatever can be done. I want to live. I wanted to begin treatments as soon as possible. Dr. George felt that because I was relatively young and had no other serious health issues, I should be able to tolerate an “aggressive” chemotherapy regiment. Surgery and radiation were ruled out because of the advanced stage of the disease. The regiment included 2 days each cycle of being connected to an infusion pump that I went home with. This, as well as the fact that I would be receiving chemo for a long time, required the surgical implantation of a portacath. This is a catheter placed under the skin allowing access to a vein for IV fluids or drawing blood. Mine was to be implanted in the left side of my chest. In other words, I had to have surgery before I could begin treatment. I hate surgery. I don’t tolerate anesthesia well. This was to be a “same day surgery” procedure but my previous “same days” always resulted in an overnight stay. But I was determined to do whatever had to be done. I scheduled the surgery. When I woke up from the anesthesia I felt good, none of the side effects I had previously experienced. I was glad it was over and ready to start my therapy. WRONG. The surgeon came into the recovery room and told me he was not able to implant the port. It might have been obstructed by the lung tumor or it may have just been something about my anatomy but for whatever reason the port would not pass all the way through the vein. Now what? After discussions with the oncologist and another surgeon we decided to try again to implant a portacath, this time in the right chest wall. This surgeon saw something on my pre-op EKG that he didn’t like so he required that I see a cardiologist before surgery. More delay. I told the cardiologist that if my heart was questionable, the worst that could happen would be that I would die in surgery. However, If I didn’t get the surgery I would die from lack of treatment. I wanted the treatment so I wanted the surgery. He agreed and cleared me for surgery. After another “same day” surgery I awoke from anesthesia with a portacath implanted in my chest. It was an extremely long day. Terry was at my side the whole time, except in the O-R. Now Dr. George wanted one more thing before beginning treatment; a PET scan. This is a sophisticated, expensive scan of the body to determine where and to what extent cancer is present. She wanted a base line to determine how effective the treatments were. So once again Terry had to wheel me through the hospital corridors, a different hospital this time. Not too many places have the PET scan equipment. The PET scan procedure was interesting. The technician who was to inject me with a substance that would “light up” the cancer cells, brought that substance into the room in a lead box. Turns out the stuff is radio active. You would not clear security at an airport for several days after a PET scan. The technician said “Don’t worry about the box, it’s for our protection”. Really???? I guess I don’t need protection in view of the fact that you’re going to inject that shit into me. Whatever. I was determined to do whatever it took to fight this battle. Shoot me up!!! The PET scan showed the cancer in the esophagus, the liver and the lung as we knew. It also showed some lymph node involvement. It just keeps getting better doesn’t it. The scan allowed them to measure the tumors, both in terms of size and in how much they reacted to the radioactive injection. Now we knew exactly where I stood. I was very weak. I felt that if I was to have any chance at beating this thing I would have to start fighting soon. I wanted treatment NOW.

SOME SOBERING FACTS

I have esophageal cancer. Specifically I have Stage IV adenocarcinoma of the gastroesophageal junction. Sounds pretty serious doesn’t it? It is. Stage IV is as bad as a cancer gets. It means it has already metastasized (spread). There is no known cure for adenocarcinoma. The statistics I have been able to gather are bleak. Both the mean and the median survival time is approximately 1 year. The 5 year survival rate is only 3 percent. Three percent. That’s 3 people out of 100. I don’t believe that it is proper to pray for one’s self but I know there are a lot of people doing it for me. Here’s what I like people to pray for. Don’t ask God to make me one of those three people. That would be taking a spot from someone else. Instead, ask God to make me the guy who improves the statistics to 4 out of 100. Thanks.

THE DIAGNOSIS

I had no symptoms until August 2008 when I experienced digestive discomfort, some chest pain, low grade fevers and night sweats. I also had general weakness and some fatigue. On September 2, I went to the doctor who sent me for an ultrasound, suspecting gall stones. I must say that I feared cancer but focused on pancreatic cancer, one of the most deadly cancers. I was somewhat relieved when I befriended the ultrasound technician enough to get her to point out some gall stones on the monitor. I suspect she saw what else was there but didn't point that out to me. Several days later the doctor called to say that there were in fact gall stones but he was more concerned with something showing up on my liver. I believe he used terms like "lesions" or "masses". He said it was cause for concern but it was too early to conclude anything and he told me to schedule a CT scan. Prior to the CT scan I searched the internet looking to match my symptoms and the liver involvement; not a good idea. First of all I don't think any two people in the world have exactly the same symptoms and if they do they don‘t describe them the same way. Secondly, the symptoms you do have can partially match up with at least 50 different illnesses. I chose a couple of the less serious ones for the time being. This gave me temporary peace of mind, "temporary" being the operative word. Also prior to the CT scan I stopped into the doctor' office and picked up a copy of the radiologist's report from the ultrasound. The radiologist was not as gentle as my primary physician. The report described what was on my liver as "multiple small, medium and large sized low attenuation lesions...likely representing solid masses from metastasis" I'm not a doctor but to me this meant it was time to worry. I had the CT scan on September 12, 2008. On September 16 my wife Terry and I met with the doctor filling in for my regular doctor who was vacationing. That was when we got the official diagnosis. It was indeed cancer but it likely was not liver cancer. The doctor felt the cancer had metastasized from somewhere else, the primary cancer. The location of the primary cancer was unknown at this point. I was somewhat relieved to learn that my pancreas appeared to be normal so hopefully I did not have this very deadly form of cancer. Unfortunately I subsequently learned that my chances were not much better with the cancer I did have. The most vivid memory I have of that discussion with the doctor was looking at Terry and seeing tears in her eyes. She doesn't cry much and it really hurts me when she does. I felt like I was doing this to her. I want to make her smile and laugh again. The doctor said that many tests were necessary and they would be spread out over a long period if I tried to schedule them as an out patient. He recommended admission to the hospital to expedite everything. I agreed and checked into the hospital that day. I had overheard the doctor tell the admission office that he wanted me in the "Hope" section of the hospital. As we were going down the hallway to the unit I asked the woman pushing the wheel chair what the "Hope" section was. She told us it was the cancer section. My hope was sinking away. Although I had some general weakness, I was one of the healthiest patients. Along with some blood tests, I was given a liver biopsy and a chest x-ray. The chest x-ray revealed a tumor on the lung. The liver biopsy confirmed cancer. It was a type that originates in the colon, pancreas, stomach, or maybe somewhere else in the digestive tract. Both the liver and lung involvement were thought to be secondary sites. We still did not know the origin or primary site of the cancer. While in the hospital an oncologist came to see me. He told me that he didn't know whether he could tell me I had months or years to live. But he could tell me that I was not looking at a normal life span. Terry and I had our first good cry together during this hospital stay. I was discharged after two days, still not knowing where the primary cancer was. I was released from the hospital on September 18. The next day I met with my daughter and son, Heather and AJ to tell them. Telling family members is tough. Not only are you burdened with your own emotional stress but now you must inflict that on loved ones. I tried to be forthright and honest. All I could say at this point was that it was a cancer that had metastasized and that’s not good. They were both great, but it was rough. When my kids left Heather called her mother, my ex-wife, to tell her. Almost immediately she appeared at our doorstep to express her grief and support. It was awkward in that it was the first time she was in this house since our divorce more than ten years earlier and she and my current wife had never met. I did appreciate my ex’s concern and my current wife’s tolerance. The next day it was time to tell my mother. I told her I was going to stop by but did not tell her why. She did not mention that she had a guest from out of town staying with her so it was a little uncomfortable when we arrived. I think this is where Terry’s strength kicked in. She took charge, taking two strangers into the back yard to leave me alone with my mother. “I have cancer.” I had barely said it to myself and now I was dumping it on my mother. What I remember most about this “dumping” is my mother’s optimism. She is optimistic to this day. And Terry is still strong. These are two women I am lucky enough to have contact with every day and they keep me going. I am blessed. Word quickly spread to family and friends. As more people learned of my problem my support network grew. Now back to the cancer. I had a colonoscopy in April ‘08 which did not show any serious problems so the doctor felt we could rule out colon cancer. The pancreas did not show any abnormalities on the CT scan so that didn’t seem to be the primary site. Where was this monster? The doctor ordered a gastrointestinal endoscopy (a scope inserted down the throat into the digestive tract). BINGO! A tumor was found in my esophagus, at the junction with the stomach. It was biopsied and of course it turned out to be cancerous and the primary site. Some advise. Most people know they should have routine colonoscopies. Endoscopies are not routinely done. When you schedule your colonoscopy (which I urge you to do) tell the doctor you want an endoscopy at the same time. It’s done by the same doctor at the same time and is a very simple five minute additional procedure. In order to justify it for insurance purposes tell the doctor you have been experiencing acid reflux. If you burp once or twice you won’t be lying. I believe that if they had done an endoscopy at the same time as my colonoscopy six months earlier a problem in the esophagus would have been detected. I think this would have improved my chances of battling it successfully. I officially had adenocarcinoma of the gastroesophageal junction also known as the GE junction. It had already metastasized to the liver. It had probably metastasized to the lung as well although no biopsy was done of the lung so that could possibly have been another primary tumor. Now what?