
THE JOHNS HOPKINS MEDICAL INSTITUTIONS
Pancreas Cancer Web
A TALE OF TWO FRIENDS
Nancy and I had been friends for 17
years – not just run-of-the-mill, talk every week or two friends. Real
friends, talk everyday, cry on your shoulder, yell at one another, always
there for each other - friends. So in early November of last year (2003),
when Nan started complaining of a backache every time she had a day off, I
was concerned. I asked her to go to the Doctor, I begged her to go, I
even got mad and yelled at her! She had all the good excuses; no money
for an appointment, no time off from work, ‘everyone at my job feels the
same’ (she was a CNA at a nursing home), it’s stress, the cold, my age…
When she started feeling like she had the flu - constantly - I again
pleaded with her to go to the Doctor. I offered to pay for the visit, to
take her, whatever it would take to get her there. However when her
“Monday” would roll around she was feeling better again and be convinced
it was her job taking a toll on her 50 year old, overweight body. By mid
December I was tired of fighting about it. The next time she complained
of a backache I said “If you won’t go to the Doctor don’t even tell me
about it.” We didn’t talk about how she felt again for another three
weeks.
Nancy and I met in 1986 – It was late January. She had moved to
Washington State from California to escape bad lifestyle choices. Nan was
moving in with her brother and his wife. Her sister-in-law, Debi, and I
were good friends. Nan and I were introduced the 2nd day she was in
Washington. Her first impression of me was that I was this ‘perky blonde’
like all the California blonde’s she had happily left behind. She
wouldn’t give me the time of day! However, being the perky person I was
and always drawn to the underdog, I never gave up trying to draw Nancy out
of her shell. It wasn’t long and we were hanging out, spending a lot of
time together. She and my husband Jim were fast friends, as was our
one-year-old son Trevor. In no time this dark haired, dark eyed, humorous
soul became integrated into our blonde haired, blue-eyed family. By June
of that same year we were calling each other sisters.
She has always been Aunt Nan to our kids as well as to my ‘real’ sisters’
kids. My parents ‘adopted’ her and Gramma was her Gramma too. My mom
always said God had brought us together for a reason… Nan either lived
with us or next door to us for the next 17 years. She was present when
both Heather and Gunnar were born and when we lost Grandpa. Nan moved
with us from Western Washington to the farm we bought in Eastern
Washington. She learned alongside of me to be a farmer. We gardened,
canned, fed animals, and milked a cow together. We rode horses, raised
chickens, rabbits, cats and dogs. Mostly we grew a family, with the kids
having a very close “second mom”. She took care of Jim’s mom during her
terminal illness, becoming her paid caregiver. Nan continued to grow as a
family member, she was one of us.
During January (2004) Nan declined several invitations to go to the kids
basketball games, shopping or almost any activity I asked her to go to. I
knew she still didn’t feel well and we argued again about her health. I
told her if she didn’t do something about it she would end up not only
going to the doctor, but missing work as well. We had an important event
coming up at the end of the month and I was sure she would end up missing
it as she felt bad all the time. She assured me she would be there.
On January 24, 2004 she was working swing shift at the nursing home. Her
friend and co-worker Laurie stated with concern, to the nurse on duty,
“Don’t you think Nan looks yellow?” Clarice answered that Nancy did
indeed look jaundice and asked her to take a urine stick test that
measured bilirubin. It was off the charts and it scared Nan. Nancy asked
if she should go to the emergency room. Clarice told her that Monday
would be fine, but she needed to see someone then.
I called the clinic on Monday morning and we got an appointment for 10 AM.
I wasn’t too happy as I had said this was going to happen! Little did I
know… We saw a nurse practitioner and she ran some blood tests. She said
she was sure that Nancy had a gall stone blocking her bile duct and would
need emergency gall bladder surgery. We went home (an hour drive) and
waited for the nurse to call. Nan started to tell me all the symptoms she
had been having and I was appalled that so much stuff seemed not to be
working properly. Late that evening, about 8 PM, the nurse practitioner
called herself. She said they had scheduled an ultrasound for Nancy at
7:00 AM the next morning. I called my sister Linda, who is an RN, to ask
a bunch of questions. Being overly curious, we scoured the medical books
and figured that it could be numerous things, none of which sounded too
good. The next morning as Nan and I prepared to leave for the hospital, I
broke down and told her how sorry I was to have wasted so much time being
angry with her. I just knew in my heart that something was drastically
wrong.
We arrived at Mt. Carmel hospital early, and they were waiting for us. I
was pleased that they allowed me to go in for the procedure with her. She
was scared and I was curious. The technician wouldn’t say a word about
what they saw. We went over to the clinic and waited to see the NP. I
started asking questions as soon as we landed. Did she run a blood test
for cancer? Did she think it might be? Would they have the results soon?
Would they really tell us anything when they did come back? She seemed
shocked that I would even ask so many things. She was still sure that it
was the gall bladder. She told Nancy that she would probably go over to
the hospital and have surgery that afternoon. I didn’t believe it.
When a messenger brought the films from that hospital they closed us in an
exam room and said they would be back. It seemed like an eternity. I
don’t think Nan grasped how worried I was or that I was sure it was much
worse than she herself suspected. When the NP did return she had no
answers for us. She stated that she was not qualified to read them [films]
and that she was referring us to a surgeon. She then told us that the
surgeon’s didn’t come in on Tuesdays, but they would have one there to see
us at 1:00 PM. I didn’t like the sound of that. We left to run errands
and came back at 1:00. Dr. Farrahamand was one of the nicest Doctors that
we met during Nan’s illness. He was so genuine. That is very important
when you are scared and need answers. He told us that the films showed
the gall bladder to be clear and functioning properly. I felt sick, Nan
was elated. She said that must be a good thing. Dr. Farrahamand
explained that if the gall bladder was fine then something else was wrong.
He got out a booklet with pictures of the internal organs and began to
show us where the bile duct was blocked by a ‘mass’. When I asked pointed
questions he replied that Nancy needed a cat scan as soon as possible to
know for sure what was going on. I felt that he knew more than he wanted
to share, and asked if he would do the cancer marker blood test – CA19-9.
He replied that he would order it and we could go to the lab after the
appointment.
I imagine that most people reading this all know the result of that test
and the many more that followed. Pancreatic Cancer, Stage 4- non
operable. It was shocking - to say the least – to realize that there was
a cancer out there that ‘they’ didn’t have much information on, knowledge
about, or cure for. I want to say that through all the doctors that we
saw, they did say that the symptoms that Nan had for the couple of months
before her diagnosis, they would never have looked for cancer. They may
have prescribed pain meds for the back, or bed rest and fluids for the
‘flu’, but that there is no set of symptoms that cause most doctors to
look for this particular cancer. That left me feeling somewhat relieved,
to know that more harping wouldn’t really have made a difference. It also
distressed me, because in this day and age we should have more knowledge
about all kinds of cancer.
I have had a couple of friends and family whom have died of cancer of
various types. I had studied about lung cancer, skin cancer and liver
cancer. I thought I knew quite a bit about the subject, but as usual I
found there is always more to learn. The disheartening part of pancreatic
cancer was that there is so little to fight it with and so little known
about it. I must have searched 2 dozen web sights in that first few days.
(Like I said I’m very curious!) Every web site I went to seemed
repetitious. No cure, No treatment, No Hope. There actually is a lot
more to be tried in the lesser stages. The only problem is that it is a
silent cancer; one doesn’t usually show signs or symptoms until it has
already spread. I just kept thinking that there had to be more out there
to learn. I guess for me knowledge is a way of coping. I couldn’t stop
looking for more information. I found the Johns Hopkins web sight almost
immediately after I began my search. They had a ton of information, just
not what I wanted to read. After a few days I started going back to the
same sights thinking I had missed something. Nan was not a candidate for
any of the studies, for any type of surgery, (the tumor had already grown
to her main artery that goes through the pancreas) and she didn’t want to
try chemotherapy which the cancer has proven resistant to. She was very
sure of her decision. She believed that God had a plan for her life and
he would see her through this like all the other things she had been
through in her life. Faith in Christ is what Nancy held on to through out
this journey. About a month into our path down this rocky road I was
still looking for something on the internet. I found myself back at the
Johns Hopkins web site and something new caught my eye. Medical Donation.
Nancy had always wanted to be an organ donor and figured that now she
would never be able to help anyone. She knew that the chance this cancer
would spread to other organs was highly likely. I emailed the address on
the website to ask more questions and got a response back the next day! I
was amazed. I had written other web sites with very little response. Not
only did I get an email back, but they asked for a phone number and called
us back. I didn’t tell Nan of my discovery at first. I wanted to get the
information in the mail first and see what all it entailed. I received
the packet of information within the week. After I had read through it
all, I knew this was something that Nan would want to hear about. We read
through the packet together and her response was that she knew God had a
plan to continue to use her. She wanted me to call ASAP so that in the
future she would be a part of some other family not having to hear that
there was No Hope for this type of cancer, at least not at the stage hers
had been discovered. She felt that there was going to be some good to
come out of all of this. It surely wasn’t the path she would have chosen
for herself, but through her willingness to donate all her cancerous
organs and tissue, maybe someday it would be like many other cancers
today. Her hope was that in time, Johns Hopkins Research will be
successful in finding cancer drugs and radiation to fight this horrible
cancer.
Sten Witzel from the Johns Hopkins Hospital Gastrointestinal Cancer Rapid
Medical Donation Program called and talked to us initially. He was
available to take calls any time we had questions. Sten gave us his
office, home and cell phone numbers in case we needed him at any time. He
sent all kinds of information, from what they do, to currant studies in
progress. He took my calls and didn’t make me feel silly with all my
questions. He called to check on Nancy during her illness. Johns Hopkins
arranged the pathologist and made all the arrangements needed. This was
quite a feat since we live in Washington State and Johns Hopkins is in
Baltimore! After Nancy passed away, we had a beautiful open-casket
funeral (Home Going Celebration). Our family has been so thankful for this
program. The people involved were and continue to be helpful and kind.
It was just the thing that Nancy needed to focus on. Any information we
have requested they have gotten to us quickly. We know that donation is
such a hard subject for people to deal with when they are faced with a
loved one being diagnosed with Pancreatic Cancer. But we are telling our
story in hopes that Nancy’s desire to be part of the cure will be realized
in our children’s lifetime. It will take many more families and
individuals to be willing to give part of themselves for this to happen.
We pray for all who read this, as it surely means that you know someone
who is dealing with this issue. May God guide you in your search for
answers.
Posted 09/07/2005 08:54 pm by Barb 
E-mail Address: ponderosa@inwi.net
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