 October
8th was the ONC meeting with Dr. Dan, and we were really excited about getting
started with David's treatment. Dr. Cameron had said that he was looking really
good and needed to walk 2 miles a day. We were lucky to get him out there to walk
a mile, but we all helped David push more and more to gain the strength back so
he could get started on his chemo regiment soon. The kids came to visit moms of
course as much as they could, and David was feeling relatively well. His anger
for the cancer was apparent to all of us around him, but he never showed it to
his kids. He didn't want to scare them so early in the game, as he did not know
what his future held. One of his big mottos was refuse to lose and he wore his
shirt proudly. He was ready to fight and could not wait till October 8th to get
there to get started. I had done a lot of research in the mean time, and found
all kinds of chemos that were available and lots more questions for our Onc. Dave
was taking pancrease enzymes at this point since he had only part of the pancreas
left, that was necessary to get the nutrients from what he was eating.
Dr.
Dan said David  would
have a CT scan before his appointment, so that we could discuss what they saw
on it. He was looking to see if any new tumors had shown up. Now I had read that
only tumors over 1 centimeter would show on a CT scan, so I was not sold on that
CT showing us the truth of things. They were finally going to get his blood marker
number, which apparently dr. Cameron had forgotten to take prior to his whipple
and after this whipple. I was not too pleased to hear that news. The ca19-9 was
one important way to watch David's protein levels in regards to his cancer. With
nothing to start it off with, it would take us time to track...
In late September,
David had a little episode, it really scared him, he had sharp pain in his upper
GI area... couldn't breathe... I thought it was a bubble that got stuck... it
went away (about 2 minutes) after I calmed him down and did some deep breathing
with him, 2 burps came out, but the panic in his face with the intense pain it
caused made me a bit nervous. He was fine the rest of the afternoon/evening...
We asked the ONC for a script for pain that we can keep handy (he seemed to be
having lots of it) but that wouldn't make him drowsy. The only stuff he has knocked
him out for 4 to 5 hours... which really wasn't too good during the day. His energy
levels seemed to be dropping, not sure why... and eating was a chore as we knew
it would be..
September was spent with family. We  planned
picnics at Oregon Ridge, and as many outings as we could before David had to start
his chemo, as we knew things could be difficult after that started. We had a party
at our house and invited some of our close friends and Dave's kids.. He looked
at them with hopes of being around for a long time. David always thought he would
beat this cancer.. He thought a miracle was going to save him, and we all prayed
hard for one.
It was a difficult time for all of us, but we kept a smile on
for David's sake. He needed to feel the strength of his family, and that was our
main goal.
Our brother, Greg in MASS was having a real hard time of things..
"This whole situation is hitting me a lot harder then I realized. I was thinking
about this the other night. With Dad, it was absolutely horrible and quick, but
because of his age, it wasn't totally a surprise or as difficult as with David.
With David, it's so much more real, and makes me think of my own life/death. It's
also hard, because out of all my siblings, I'm much closer with you and Cindy
then I am with
David, so I've got these feelings of guilt because I feel like I should have been
closer to him all these years. It just sucks." Poor Greg he was struggling
with being so far away and wanting to be here to help us out... "Why is it
that families come together like this only when a traumatic event occurs??"
That was a good question he asked. I was not that close to David myself, being
that he lived near DC most of his adult life, and visited only a few times a year,
we never had the chance to get close. But looks like this cancer was going to
push us into a closeness we never believed possible...
I was getting attached
to the JHU board almost like a religion, I was there day and night following everyone's
progression, wondering how it was going to be for my poor brother. I printed tons
and tons of info every day, and found a friend Mindy through the board. Her mom
was diagnosed a week before David. So they were in a similar boat as we were.
She had an aborted whipple, but ended up going through cyberknife. She was talking
about a support group, but I could not even think about that at this point, we
just wanted to get started on chemo first. I agreed that it was a necessary and
smart idea, but we would visit it at a later time. She was a very compassionate
person and we exchanged emails weekly. I posted on the board as much as I could,
asking questions and drinking up as much info as I could about possibilities to
save my brother!
ONC APPT DAY - FINALLY!
October
8th was finally upon us and the small scared group of us went down to  Hopkins
to finally meet Dr. Dan. I had talked to him via email for over a month now, and
was ready to meet in person! The CT scan showed most everything was clear but
there were 2 small lesions in the liver and his ca19-9 as 171.5. The norm is under
37. We were excited to hear that his CT scan was looking good, however, the ca19-9
meant that the cancer was defiantly still there, and we discussed CHEMO and then
radiation after that. It would begin on 10/27/04. First he would need to
have the port placed in his chest which he did on October 18th. Most chemo's are
really hard on the veins of shier patients and David would be taking a really
aggressive approach which would definately have collapsed his veins in a matter
of months.
DAVID STARTS CHEMO!
His first chemo
day was a bit scary, David and I arrived in plenty of time to get through all
the paperwork that is associated with the 1st day of chemo. It was to be a full
dose of Gemzar 1000mg/m2 slow infusion (which I insisted on) of gemcitabine and
a low dose of cisplatin (20mg/m2) Heavy hydration, both given once a week x 2
weeks and repeating every 3 weeks. So that meant 2 weeks on and 1 week off. The
infusion center at Hopkins was very busy, the nurses all running around and the
patients sit in a circle all looking at each other for the most part and chatting
with their caregiver or themselves or sleeping. There was another section that
had TV's but we didn't move over to that part till around noon when Dave's Soap
Opera came on. We would chat, play backgammon, play on my laptop, eat, drink and
sometimes yack with our neighbors. Our nurse liked to talk but we did have some
questions that 1st week, so it was ok. No sign of Dr. Dan that day or any other
day for that matter. They take your blood first and weigh you in and take your
vitals, then they send us to the other side, where we wait for labs, if your blood
is good enough, then chemo is a go... Dave did pretty good after his first chemo.
Only initial outward physical effects were fatigue. However, his blood was another
matter.
His second week was to be on Nov. 3, 04. Unfortunately,
his #'s were too low... the WBC went from 3760 last week to 1580 this week, the
HCT was ok 37.3 this week (was 38.7 last week(, the platelets went down a bit
to 137,000  which
is fine (from 196,000) but the big prob was the Neutrophils went from 3250 to
690. If you go under 1000 NO chemo... why it went down so much, I guess from the
chemo. They sent us home... The nurse we had that day was so slow, I thought David
was going to crawl out of his skin... she is tenured and loved to play doc and
talk and talk and talk to every patient. Well David was NOT interested in chatting
with her about his problems, he wanted to get the day moving, it was already a
long enough day without adding a SLOW nurse to the equation!!!! anyway.. We were
upset with this setback, they gave us nothing to take or do to help these numbers
go up. Just gave David masks.. and said see ya next week.
On November 10th,
they gave him his chemo but 25% less of the Gemzar because of the previous weeks
blood numbers, in hopes it wouldn't happen again. But unfortunately, this was
not working. On 11/17, no chemo again. On 11/24 they gave him 25% less Cisplatin
to see if that was any help, once again, no go... December 1st no chemo. For some
reason JHU doesn't give the shots to help neutrophils go back up. Why? No clue,
but we had had enough of this waiting around and doing nothing. David's blood
markers had gone up to 189.5 which mean this regiment was obviously not  helping.
We
spent a whole day taking pictures of the whole family! It was something we had
meant to do earlier but its so hard to get the families together, we took lots
of siblings pics of course... It was a very special day, but so tiring for David
:(
THE NERVE BLOCK
We scheduled a Celiac
Nerve Block on the 11th of November to help with the excruciating pain David was
experiencing. It was wonderful for him in the end, though the actual procedure
was royally screwed up by the folks at JHU. They changed the appt from 11am till
2pm but called the wrong number so we never got any word, the ride down to JHU
was hard on Dave as it was, so there was NO way we were going to go all the way
home and turn around to come back.. So they finally got him set up in a bed, he
was in soo much pain, and we waited.. All dam day. Finally around 2:30 they brought
him back, but they had issues with the CT scanner that is used in conjunction
to putting the celiac nerve block in. It was a large needle placed in his back
and run through towards his celiac nerve, mid to lower back area. Then they shoot
alcohol in there (first a numbing medicine) and that's about it. It worked really
well, he had a few initial problems, little bit of pain in that area, and such,
but all in all, he had about 85% relief which considering his pain was soooo high
all of the time, this was a huge relief for all of us, especially Dave. He was
only taking up to 4 oxy's a day after his block for breakthrough pain!
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