Symptoms, Tests, and Hope
Every story has a beginning. The
story of my cancer journey begins several years ago, while the cancer cells
were still small in number and microscopic in size. The story of my journey
with cancer goes back to 1974.
1974 is when my wife Kay’s Dad had
his first bout with cancer. He had an extensive surgery that involved, among
other things, losing 75 – 80% of his stomach. He had a second bout 15 years
later when he had his larynx removed and
The next major cancer event for us
can in 2010. That is when my wife was diagnosed with Triple Negative Breast
Cancer. We learned quickly that not all breast cancers are created equal. I have
learned in the last month that not all pancreatic cancers are either. That is
true for all forms of cancer. There are so many nuances that it is difficult
for the untrained person to even keep up.
For those who are not as intimately
connected with my family, here is what the journey has been like for us. It
actually goes back 8-12 weeks when I began to have uncontrollable pruritus.
That is basically itching all over my body with no relief from any and all
attempts. I felt, as would most folks, that I was allergic to something so Kay
and I set about to determine what that was. This meant changing body wash,
shampoo, laundry detergent, medications, etc., with a 3-day time frame to try
each. That took a 3-4 weeks before deciding it was not an allergy and I needed
to get some medical attention. I called the Friday after Thanksgiving and made
the appointment with my PCP.
By this time I was quite exhausted.
The constant itching kept me up most nights. I was getting by on 2-4 hours of
rest each night. The litany of symptoms I worked through would curl your hair.
In addition to the pruritus, and fatigue I lost 20+ pounds in about 4-5 weeks
and had many other symptoms I’ll not bore you with.
The Saturday before my schedule MD
appointment the following Wednesday, our family was downtown Pittsburgh at the
Christmas parade. I was sitting on the curb behind everyone, because I was so
fatigued as was my norm then. Of course when you never sleep, it is easy to
blame the fatigue on the lack of sleep. And it surely was a culprit in this
mess. During that parade, my wife walked up to me, and said, “Look me in the
eyes.” (Kay was a registered nurse in her first career.) She pulled my eyes
open and said, “You are jaundice. I meant you are completely yellow. That is a
sign of liver disease. You need to tell that to you doctor next week.”
That led me on another path. Liver
disease is something I have witnessed in my good friend Craig. Both of us would
clearly be non-alcoholic cases of cirrhosis if this were to happen. In Craig’s
case, it led to a transplant.
As I researched I recalled many
articles I had read where acetaminophen overdose has caused liver failure and
death. I have taken a medication to help maintain a healthy blood pressure for
nearly 20 years, so the only pain killer I could take for any sort of ache was
that drug. I knew I had taken it for many years, but I tried to stick to
recommended doses. I still wondered, “Was this the culprit?”
By the time my appointment arrived,
I was so ready for some medical advice that I hung on his every word. The
pruritus and fatigue had me to the point that I described it to Kay as being “absolutely
miserable.”
In advance of that meeting my MD I
typed out a list of everything I had tried and all of the symptoms I was having
and my thoughts regarding the medication. I arrived at the office for my
appointment and after being escorted back the nurse who took all of my vitals asked
if I was okay to talk with the PA students first. I have seen 25-30 of them
over the years, but today I declined. I just did not want to go through that
litany twice. I said it would be fine if they are in the room while I was
examined, but I just did not want two examinat
I have seen the same PCP for over
15 years, so he knows me pretty well, and knows I am no hypochondriac. When he
came into the examination room, he “So, what’s up?” I
I simply handed him my list.
He looked it over, and then said,
“Lie back.” He began to feel my abdomen, then called the PA over and said,
“Feel this. Feel how swollen his liver is.”
To shorten this long story, I was
given a lot of blood work and other tests and told to schedule a sonogram ASAP.
Before leaving he said, “This is
interesting. And the one thing you don’t want to be in your doctor’s office is
interesting.” That statement added a much needed bit of levity to a scary
situation.
I called first thing Thursday morning
to schedule my sonogram and received a 1:00 pm appointment on Friday to allow
for needed fasting. Later that same day the MD’s office called and asked me if
I had scheduled the sonogram. After informing them that I had for the next day,
she told me, “Whatever you do, do not miss that appointment. The blood work and
enzymes are showing lots of concerning levels.”
That evening my son Richard and his
family were coming from Tennessee for a 4-day weekend visit, which I had lots
of fun plans for. We went to my oldest daughter’s home and hung out with them
for a few hours before everyone went home. They came over the next morning with
fresh coffee and doughnuts. I had to decline until after my test, but we spent
some time together until the sonogram’s scheduled time of 1:00 pm.
The location for the exam was just
five minutes from my house, so that was a short trip. The test took 10-minutes
and I was home by 1:30 pm.
I walked in the house, heated my
coffee, grabbed a doughnut and prepared to enjoy the day as much as the
symptoms would allow. Before I even settled in, I saw I had missed a phone
call. I retrieved the voice mail, and it was my PCP calling me 15-minutes after
the sonogram was completed. He left me his cell phone and said call him.
Kay and I went upstairs to the
bedroom where I returned his call. We all know that your MD does not call to
say, “Just checking in to see how the family is doing.”
He answered the call, and I
experience the words I have stated in messages for years: “We are all one phone
call away from our lives changing forever.”
His words were basically, “Terry, I
don’t know what you are doing, but you must stop it and go immediately to the
emergency room. We need a CT scan. The image is not as clear as we would like, but
there is something going on that cannot wait. We are afraid you could go septic
and with what we see, you may not last 24- hours.”
He had my full attention.
I said my good-byes, left for the
hospital expecting to be back in a few hours. Kay did not even go since all of
our kids were there, and I anticipated returning soon. I came home four days
later.
At the hospital, they to lots more
blood, performed the CT scan, and conducted an extensive interview with me
which closed with something to the effect of, “You’re not going anywhere. We
have to keep you. We are afraid of what may happen.”
The next morning I had an MRI where
I learned I was a lot more claustrophobic than I thought! I have had one
previously, but ever where I was completely inside. I can completely understand
how some people can go stir crazy during those tests. The technician reminded me
several times to be perfectly still, but remember I was still having this
miserable itching over my entire body, so it was difficult to do.
Later that afternoon, they ordered
another CT scan, this time with a contrast and came in with some vague comments
about a “mass” on my pancreas. I was told that the reason for the itching was a
“mass” was on my pancreas and was pushing on my liver and gall bladder duct
work. It had bile completely backing into my bloodstream at 4-5 times normal
levels. The reason nothing topical would relive the itching is because it was
in my blood stream and thus pruritus over my entire body with not relief from
anything. I learned this had my blood sugars at dangerous levels due to damage
to the pancreas. The liver and gall bladder were struggling from the bile
back-up which was dumping into my system and had now started to cause kidney
damage.
I was a mess and had no idea!
Kay and I both thought they seemed
afraid to use the word “cancer” because they danced around it every day from
Saturday – Monday. Monday that did change.
I was taken down to have yet another
test called an ERCP. (Google it, if you want to read the 15-syllable full name
of it. J
) In essence I am sedated while a camera is inserted down my throat and
throughout my GI tract. During the procedure a stint was inserted in the duct
where the gall bladder and liver duct join, to begin to allow the bile to leave
my system. It took about 10-days for it to be completely gone, but was most
effective.
They also took biopsies of the
liver and the tumor. (The surgeon who did the ERCP was the first person to use
that word to us. If I were to do it over again, I would ask much more pointed
questions earlier on.) We were told they would have biopsy results on Friday or
Monday.
One odd note, I counted and as best
I can tell, I was “stuck” 53 times while I was in the hospital. I think if I
stood up and drank water I would have looked like the cartoon character with
fluid shooting all around. J
The days following were busy and
hectic. I had a friend (Thanks Stuart!) connect me with a good oncologist, who
connected with the full Allegheny Health Systems team examine my case, and
ultimately with my surgeon. I learned that I was indeed in the 20% who could
qualify for surgery. It was pretty sobering to learn that 80% of the folks he
talks to, there is nothing they can do.
The next day, when the surgeon’s
office called me to get me into the office, I learned there was a “glimmer of a
possibility that there may be a chance that there may be some prospect of
hope.” I was in a lunch meeting with one of the divisions in my company. When I
left I called Kay. I ended that call, and realized my eyes were full of tears.
With God, we live in hope and
expectation. I still feel good about that “glimmer of a possibility that there
may be a chance that there may be some prospect of hope.”
