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My mother, Rosemarie Kane died on September 21, 1991 of metastatic pancreatic cancer. She was diagnosed on July 14th of that same year. My mom was only 58 years old. Several things about her diagnosis, treatment (both physically and spiritually) and finally her death were very frustrating to me. (This is a long one... get ready...) My mom began having problems in the spring of 1991... indigestion, bad taste in her mouth, etc. Her doctor sent her for some tests and the diagnosis was a reflux problem. She began taking medicine for the reflux (I can't remember the name of the Rx) but it didn't help. In June she began a series of more tests and ultimately an ultrasound found the mass on her pancreas. We were given the diagnosis on July 14th and by July 24th the cancer was in her liver. My mom had a history of almost 40 years of smoking and several years of alcohol abuse. Only after she died did I find out that those are two common factors of some pancreatic cancer patients. I feel as though her primary care doctor, based on her medical history, should have conducted the ultrasound much sooner. Another frustration was that after being referred to an ocologist (Dr. Kloss in Danbury, CT... he was wonderful) she was given a needle biopsy which showed no cancer cells. Dr. Kloss told us this was not uncommon in pancreatic cancer patients because actually hitting the tumor to get cells is not guaranteed. That there was no other test to provide a definite diagnosis was so unnerving. Dr. Kloss didn't hold out much hope and since the cancer had spread so rapidly he told us that treatment would only give my mom a few months at best and during that time she would be very ill from the chemo, radiation, etc. He did, however, refer us to an experimental program being conducted at Valhalla Medical Center in Westchester, NY. We made an appointment and several days later we spent hours and hours waiting for the doctor conducting the study to see my mom. After waiting all that time, we got into the exam room, the doc looked at her information and announced that she wasn't eligible for the program because she lacked positive results from the needle biopsy. The kicker is that he was angry at us for wasting his time! I almost hit the roof... not once in all of my conversations with the staff during the previous weeks did anyone mention that "little matter"! He recommended she have another needle biopsy done and then come back again to see if she would qualify for the program. By the time her next appointment came around with them she had died. I must confess, after she died, I didn't call them to cancel her next appointment with them. I wanted them to call me the day before to remind me of the appointment just so I could tell them they were too late and she had died. I feel awful about it now, but I was so angry then. The most horrible part of my mom's illness happened about five days before she died. We decided to have my mom admitted to the hospital because she was unable to take her pain meds orally. Hospice wanted me to learn how to handle her IV's but I was terrified of the prospect and felt I couldn't handle it. The day she was admitted started with her being very agitated and very incoherent. She kept trying to get down our stairs and the people from hospice had to call their supervisor to come and try to settle her down. They gave her some injections, but they didn't work. They called me from work and after talking to Dr. Kloss the decision to have her admitted was made. I called a local ambulance company and told them we needed a transport to the hospital for a direct admit just like Dr. Kloss instructed me to. When they came I gave them a list of all of her meds she'd had and told them the circumstances. We had decided that my mom would be a DNR should she code but at the time Connecticut didn't have the "DNR wrist bands" for terminally ill patients (they went into effect October 1st of that year). When we arrived at the ER, the ambulance people suggested I go fill out the paper work while they got her in the hospital. The next thing I know I hear this bone chilling, sickening screaming coming from an exam room. I ran to outside the room and told the nurse at the desk that my mom was a terminal cancer patient with a DNR order. By the time she got in the room it was too late. She had been given an injection of Narcan, reversing and eliminating from her body any painkilling meds she had in her system. The ambulance techs apparently presented her as a drug overdose to the ER doc. The ER doc came out and I demanded to know what was happening. He said "What do you mean? Your mother almost stopped breathing." I looked him in the eye and said "When you have terminal cancer and you're getting ready to die that's usually what happens." By this time, security had been called and after being treated like a criminal she had been tethered to the gurny. Her pain was beyond anything imaginable. She was screaming, gnashing her teeth, straining against the restraints... I thought I myself was going to die. I felt so guilty. If only I had agreed to learn how to handle her IV's. When Dr. Kloss called the ER to talk to the doctor who gave her the Narcan I'm told he went absolutely ballistic. We finally got her to a room upstairs, but there were no beds in Oncology so she was on a general medical floor. This posed even more issues. The doctor gave the orders to really pump the morphine into her because all of the stuff that had built up in her system was now gone and we were starting from scratch. When my husband and I left at 1:00AM she was pretty settled. However at 3:00AM we were called and told to come back. You see, the nurses told us they couldn't handle her. She was trying to climb out of bed, was yelling and was totally incoherent. When we arrived she was in a straight jacket and the amount of morphine being pumped in through her IV was a fraction of what it was when we left the hospital. I demanded to know why and I was told that her breathing had slowed down to 4 breaths per minute so they needed to cut back on the meds, otherwise she would have died. Well, it was now my turn to flip out. I started yelling and screaming that I wanted her doctor called immediately and I wasn't going to stop yelling and screaming until they spoke with him. Wouldn't you know it, a few minutes later the nurse came running into my mom's room and upped the dosage to where it was the night before. She told us that Dr. Kloss was furious that it had been reduced. Oh, by the way, this whole time my mom was in a room with another patient who during all of this kept telling the nurses that my husband and I were killing my mom. (All she heard was my mom's screaming and didn't understand what was going on.) When I realized that the room arrangement wasn't temporary I went to the Head Nurse and made some demands. #1. Private room... if my mom was going to die, I wanted her to die without some lady telling us we were killing her. #2. I wanted a total accounting of what happened from the time my mom rolled into the ER to when she was brought upstairs. (The end result of that was that the paramedics told the ER doctors that my mom was a drug overdose because of all the meds Hospice had given her that day.) After my "fit" my mom was moved to a private room and the nurses on the floor she was on were given pain management instruction from the pain mgmnt specialist from oncology. After 3 days of this hell, my mom finally calmed down and was no longer in any pain. Two days later, when we arrived to see her, the nurses told me we couldn't go in and that we had to wait for the doctor. When I asked why they didn't want to tell me anything. That's when I realized that she had died. I asked them if that's what happened and they said yes. She had died about 10 minutes before we arrived. That morning my husband and I were running about 10 minutes late (we liked to get there really early so we could talk to Dr. Kloss) and we were too late. I felt so guilty and sad that we hadn't been there with her, but I was relieved that she was no longer going to be in pain and glad that she was with our Lord. Thank you for letting me tell my story. It's been a long time since I've talked about it and it feels good.

Posted 01/24/2001 04:15 pm by Elizabeth
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