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.

Saturday, January 24, 2009

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?

2 comments:

  1. Jerry,
    First, as a 2 cancer survivor, I wiah you the best. Treatments keep changing and there is always something new to be hopeful about. Now, re your kids and their reflux, have you or they considered their sleeping elevated on a wedge that supports them on an even plane through the torso? If you sleep elevated on a wedge pillow that supports you on an even plane through the torso, it simply uses gravity to keep acid down and airways open. This really does help. I am the inventor and owner of MedSlant, a torso length wedge pillow. I am not trying to sell you anything, just want to make you aware of the help you can get from sleeping on a wedge. Just make sure the wedge is at least 30" long.

    ReplyDelete
  2. Hi Jerry,
    Thanks for the site with information about esophegeal cancer. I was caregiver for my father who had it and I sometimes have some symptoms as well, but wasn't sure how to go about getting my doctor to check it. I will be bookmarking the site and getting checked out. You may've saved a life--I'll keep in touch.
    Meanwhile, may God bless you as you go through this difficult time.

    ReplyDelete