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Pancreas Cancer Web
ELIZABETH
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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