First journal entry
The original reason for going to the doctor was for lower abdominal pains
that were not constant but showed up usually late in the day and sometimes
kept me up all night. My primary physician couldn't find anything evident
via blood samples, and physical exams. She then recommended a two week
treatment of Nexium to see if it was just stomach problems that may be
taken care of by the Nexium. Two weeks later, with no relief, I went back
to my primary physician and told her that the Nexium had not provided
relief, but that I had noticed that when I had taken some ibuprofen for a
lower back pain that the abdominal pain had also went away. I thought this
somewhat unusual because I would have thought if it were a true stomach
problem that the ibuprofen would probably have aggravated it vs. helping
it. I told her that I had some concern that the problem could be a hernia
and she said that given the location and the fact that the ibuprofen seemed
to help that a hernia was a possibility and she did an examination for
that. She did not find anything, but also given my size, she said that a
hernia would be harder to detect. Her next suggestion was for me to see a
general surgeon to let him examine for a possible hernia or something else.
So, off to the general surgeon (as you've noticed, I've not used names
here.... if needed, I can supply them). The general surgeon did a much more
extensive exam (deeper probing) and was still not able to find anything
consistent with a hernia or anything else (at least he didn't say anything
at the time). He wanted me to have an abdominal CT scan to see if it could
be a deep hernia or something. So, off to the CT scan and wait for the
surgeon to get back to me. The surgeon got back to me on Friday 3/21. With
what to me, as an afterthought now, seemed to be very poor "bedside"
manners, he called me on the phone as I was out and about for the day and
told me he had "some good news and some not so good news". The good news
was that I didn't have a hernia. The not so good news was that they had
discovered a growth on the tail of my pancreas along with possible spots on
the liver. He said that he wanted to do an MRI to get more info and would
schedule that for early the next week. I was basically in shock at that
particular moment and couldn't even think of any questions to ask. After
telling Karen the conversation (we were in the car), we decided to call
back and tell the surgeon that we were only 5 minutes away and would like
to meet with him to ask a few more questions. He agreed and we were there
and in his office a few minutes later. He explained that the growth was
approximately 10x8cm and that there were questionable spots on the liver.
He said that the growth could be a cyst and that the spots could be just
shadows. He also said that worst case could be that it was pancreatic
cancer and that it could have metasteszed (sp?) to the liver already in
which case there's very little that can be done. He drew some blood for lab
work and got his nurses working on scheduling the MRI. This was all at
4PMish on a Friday afternoon. You can imagine we had a wonderful weekend.
The MRI was scheduled for the following Thursday and he said he would have
the results and meet back with us on Friday. On Friday 3/28, we met with
the surgeon and he said that the growth was definite (I'm not sure of the
size) and that the liver showed lesions consistent with metatastic
cancerous growth. Also that the markers in the bloodwork (think it's
CA19-9) which should normally be in the 300-400 range (think that was the
number) was over 7000 which was also a strong indication of pancreatic
cancer. At this point he said there was nothing more that he could do for
me and that I needed to see an oncologist as soon as possible. He got his
nurses working on that and was able to get us into Raleigh Oncology and
Hemotology that afternoon.
So, now on to the oncologist. The oncologist said that all of the bloodwork
and scans, and all info that he had indicated pancreatic cancer. He said
there was a slim chance that it could be lymphoma or Hodgkin's and that we
would need a biopsy in any case to determine the treatment plan. He did say
that pancreatic cancer is terminal, but danced around the question of life
expectancy. By this time, it was after 5PM (again on a Friday) and too late
to get the biopsy scheduled. He said that he would get someone to schedule
it first thing Monday morning and get back to me. As you can imagine, we
had another wonderful weekend.
The needle biopsy was scheduled for Tuesday morning at Rex and the
oncologist said that he would get it pushed and get back to me on Wednesday
as he was going to be out of town on Thursday. The biopsy went OK other
than they told me I wasn't a good breather. You have to take breaths
exactly the same each time so that they can see where to move the needle
via the CT scan. The oncologist called on Wednesday morning and said that
the pathologist thought that at first glance the biopsy didn't appear to be
standard run-of-the-mill pancreatic cancer, and that that could be a good
thing. He said they needed more time to study it and we would therefore
meet on Friday. So, on Friday 4/4, I'm back to the oncologist. He came in
and said that the diagnosis was indeed pancreatic cancer. The somewhat
different things that the pathologist saw was squamous (sp?) cells that
don't always appear as standard cancer cells. He laid out three (actually
more given combinations) possible plans of attack. He said that I was the
healthiest looking patient that he's ever had come in with pancreatic
cancer. He said that I was not outwardly symptomatic and that I was very
young for this type of cancer (median age is over 60). He said we could do
nothing and wait until I got symptomatic to start treatment (not what he
would recommend). He said we could go with the standard treatment, which is
a drug called GEMZAR that has relatively low side effects, but is also
relatively low in results (10% shrinkage of the tumor). The third option
was a more aggressive regimen called GTX. It's a combination of drugs, the
first being GEMZAR, the second is Taxotere, and the third is Xeloda (or
maybe Xoleda). He said if it were him (and he's roughly the same age), the
third option would be his choice (and he said we could do combinations of
two vs. three, etc....). I told him that I wanted to get a 2nd opinion
before I started treatment and he was OK with this.... he said he would get
a 2nd opinion himself and that a week or two was not going to be a big
problem. We immediately started making calls and gathering all of the
pertinent documents and scans and slides and whatever. Within a few hours,
we had enough together to get an appointment at Duke or a 2nd opinion for
tomorrow (4/10). All of this was again on a Friday.... so another great
weekend.
I guess that's about it.... that's where things stand right now. We go to
Duke tomorrow, and in typical denial fashion, we've put off getting all of
our questions together. We're going to work on that tonight. One of the
questions will be about JH and any programs that may be going on there,
including working to shrink the tumor to the point that surgery might be an
option.