 Christmas
2004
Holiday time was upon us. In my heart i had the feeling this
might be our last Christmas with David. I never voiced this of course, just tried
to stay positive for everyones sake. His blood marker went down to 133, which
was promising. It seemed the new chemo was kicking in, but I know how things can
change at the drop of a hat, so I tried not to get my hopes up. David was happy
to hear that news, and we did as much celebrating as we all could over the holidays!
Dave's
weight loss is bothering everyone alot, he is just not able to keep it on. He
isnt eating well at moms, we are always trying to bring him goodies and stuff
he likes, but I think he resists eating becasue it casues him so much bloating
and abdomen pain. We did some research on the Internet about Prosure, its a supplement
that is recomended for Pancreatic Cancer, however the dietician at Siani did say
it had alot of Sugar, and maybe that was not a good thing for Cancer. Something
about sugar feeding cancer. David and i both though that was kind of odd, so i
looked to the JHU board for answers. OThers found it odd as well, and it is one
of those unexplainable things, that people say and think but no one really has
any proof. I do know that David  did
feel better when he was not having high Sugar, so we only did the prosure thing
for a few weeks. It did put on a few pounds.
Cindy went shopping and brought him some smaller clothes, as his stuf was
starting to fall off. We had met with a new nutrionist at Siani, Nick, and he
suggested we go for a Health Shake.
December 4th...We immediately
liked this young enthusiastic and HOPEFUL brazillian! His father was an Onc as
well in his homeland and he had a wonderful manner about him. We still actually
had hopes that David would beat the odds (which are very scarey, 95% of all PC
Patients live up to one year and 5% live 2 to 5 years- not a good prognosis)but
Doc Erlich was into trying new treatments and showed us that we could prolong
David's life and hopefully in time for new drugs to come out to save him. He also
was very shocked that Doc Cameron performed the whipple on David since he had
liver mestatis. He said that is very unheard of. Today I look back and wonder
if that whipple helped or really hurt david in the long run... well anyway, back
to the story... Unfortunately there is little money for PC research becasue only
a bout 30,000 people get it every year, and most of them die. Clinical trials
are almost a waste of time, so far none of them have shown any added longetivity
and most dont even get past phase III trials becasue the patients pass away. There
was little postiive info out there for us to hear. This doctor seems positive
and made David and all of us feel good. So we decided to give him a go.
His
chemo started on December 8th, and boy was IT a LONG day! See how much David has
changed since his diagnosis. It was incredible, losing a few pounds every week,
he was really thin, he was down to 130 pounds now (was 143 post whiple, and 175
before he got sick) and he did try to eat, but it was always painful. We loved
Sinai, the nurses were wonderful, so quick and nice and the whole infusion area
was the best. They even had free parking for us  at
Siani, i cant tell you how much hopkins parking cost me over those few months!
It was rediuclous, anyway we loved the new place, the chemo day was long. The
treatment regimen included Gemzar 1,000mg/m2, oxaliplatin 85mg/m2, Avastin 5mg/kg,
all on day1 every 2 weeks. Neulasta was given on day 2 of each cycle,for his low
counts. He had a prescription for Tarceva 150mg by mouth once a day, continuosly.
They of course gave him extra hydration and all his premeds and stuff as well,
i think the 1st day there lasted like 13 hours. So long.. but Dave was a real
trooper, i always called him my hero casue i KNOW i could never have gone through
all this just to try to prolong the inevitable. With little hope of a cure, it
seemed like alot to be going through. But he wanted to fight and keep trying....
always in hopes of a miracle cure coming about.
The week after chemo we went
back on Wed for hydration and blood work to see how he was doing. The hydration
always made him feel good. And We liked seeing the other PC patients in the infusion
area. Wednesdays was the big day for Dr. Erlich's PC gang. Sinai had the best
bagels in town as well, so David looked forward to me going down to the hospital
cafeteria for a big ice tea and a hot toasted Poppy bagel with cream cheese every
week for his breakfast! Then i woud go down to the gift shop or the little snack
place next to it, and get him goodies for the afternoon. He was always hungry
and poppy and lemmon seemed to be his favorites while on chemo.
PC
SUPPORT GROUP
On December 22, 04 we had our 1st official meeting
of the PC support group. Some really wonderful folks, with thier caregiviers.
It was soo nice for us to meet people in the same boat, and who totally  understood
where we were comin from. There was no interaction at Hopkins like this. It was
more like a family and David really liked to open up to this crew. Eileen Marks
was our coordinator and she even got us sponsored! So we had goodies and drinks
in our monthly meetings, and speakers sometimes too. This of course was Mindy's
idea from way back, that finally got to be brought to reality. Her mom Ruth was
a real spitfire as well, and foruntately the group met on Wednesdays so David
and I were there every wed one way or another!! Alot of days, he had to drag his
chemo with him, but our nurses never minded. I always came to get them when it
was time for a change of bag or whatever. Most meetings he made, only a few towards
the end that he was just too tired to attend.
We all kept in touch via email
as well as in meetings and phone calls and hanging around in the infusion room.
It seemed there was always one or two from the group having chemo or a neulasta
shot or hydration or something, so we all saw each other quite a bit over the
months.
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