THE JOHNS HOPKINS MEDICAL INSTITUTIONS
Pancreas Cancer Web
MARGARET MARY
It is with great sadness that I report the death of Margaret Mary
Valentine, age 58, due to the effects of Pancreatic Cancer. Margie rejoined
her beloved parents on January 31, 2006, at 9:00 PM, in the presence of her
brother, sister, and devoted niece and nephews. My wife's Aunt and Godmother
was truly a wonderful person, and everyone that knew her loved her, and
everyone that loved her, will miss her. We have been reading posts on this
board since August '05, and like so many others, have learned so much and are
forever thankful for the honest sharing of other's experiences and stories.
To that end, I also want to tell the story of Margie's journey, for those
very same reasons. Knowledge is power, and power is hope, and eventually a
cure. This was her time, and God has called her home, as all of us will be
one day. We are angry now, but will try not to point blame or pass
judgement. My wife and I are 1000 miles away, so some information was lost
over the miles, or misunderstood. But, this is what we saw and thought.
Marg was dx in early September of 2005, after having noticeable symptoms
(pain) in July, but as with so many others, the initial dx was a tumor on her
pancreas, and some questionable 'spots' on her liver. We now believe she was
Stage IV, with mets to the liver, but back then thought we were only fighting
a growth. Her first CA-19 was 11,000, and the doc noted that was very high,
with a 'normal' range of 0 - 37. We never again heard another CA-19 number,
but didn't need to. Pain was what brought her initially to the doctor. Her
first public symptoms (we never found out how long she may have known
something was wrong. She was a surgical RN and all of her friends were
medical, but she was private with any concerns) were an uncomfortable pain in
the middle of her stomach, and an almost overnight shoot up of her blood
sugar. Besides, she just felt lousy, with frequent indigestion. The doc
started her on an insulin pill in July '05, but Marg stopped taking it
because it seemed like the pain was worse. She was handling the indigestion
with antacid, and was all over the doctor to treat the pain. After a nice
family vacation in early August '05, the doc ordered the tests (more blood
work, ct scan) needed to start finding out what was going on. In early
September, the doctor did a laproscopic surgery (EUS) to get a look at the
area, take a biopsy and do a wash of the area for analysis. And, since it
was a surgical procedure, they delayed the start of chemo because of the 'one
week rule', or whatever it is when they say something can't start until
sufficient time has passed. This actually caused a two week delay, because
of the timing of her chemo start date. I think in terms of PC, this is kind
of like the 20 minute rule for swimming after eating. Does it really
accomplish anything? In this instance, time is a killer, especially with an
aggressive cancer. PC doesn't abide by any rules. Should we? The doctor
(not an onc) said that he wouldn't tell her everything was fine and wouldn't
tell her everything was fatal, but it was up to him and us and her to find
out as much as we could and then decide how to proceed. I think he knew the
prognosis from the beginning, and we quickly found out the statistics, but
didn't want to take away the hope. OK, fair enough. We were into getting
her to a cancer center, talking to Dr. Fine, etc., but she settled on her
case going before a University Medical Team, who would help chart her
treatment. I now think we all wasted valuable time waiting, and waiting, and
waiting, for test results, meetings to occur, chemo to start, etc. To
control the pain, they tried an endoscopic alcohol swab of the suspected
nerves, but she had a reaction to the alcohol, and also again more pain. It
wasn't a good experience, so that didn't work for her.
Marg was able to get into a clinical trial in October, using Gemzar and
Avastin. We think she was in the group that had the Avastin, because the
first two treatments really laid her low. So low, in fact, that she didn't
continue the chemo. Her chemo schedule was every Friday, 3 on, 1 off,
thinking that she would have the weekend to recover and could actually go
back to work during the week. This never panned out, but that was the plan.
The pain was the main target throughout the first several months of her
ordeal. No matter what was tried, they couldn't sustain pain relief for more
than a few days. Most of the time, she pegged her pain at a 7-9 level, and
this affected her eating, outlook, everything. The patches only worked
sporadically, and she was better in the hospital when they could give her the
liquid form. The pill forms never seemed to kick in fast enough or stay
around long enough. So, she checked herself back into the hospital at least
twice just for the pain. They tried to do an intrathecal procedure (celiac
nerve block), but that failed to show promise the first time. The second
time it was tried, it worked. They put an intrathecal pump in place, and her
pain dropped immediately to the 2-3 level, and stayed there until the end
when pains started coming from different locations. Our main take on the
pain is that if the intrathecal pump had been tried earlier, her quality of
life over at least two months would have been drastically improved. I don't
know, or understand, why this isn't tried sooner, and I hear that there are
dangers with this procedure, but, My God, the pain was going to kill her
before the PC ever did. And, I think she would have been more tolerant of
the chemo side effects if the pain hadn't been so intense and constant.
Marg stopped eating sometime in October. The chemo nausea, the feeling
of fullness, the overall lack of an appetite, all combined to effectively
take food out of the picture. TPN was tried for a week or so around
Thanksgiving, but this too made her uncomfortable and seemed to cause even
more pain. So, she told them to stop. I believe that she had lost over 100
pounds by Christmas, and it was fortunate that she had it to lose, but her
strength also seemed to go hand in hand with her weight loss. By the New
Year, she was effectively bedridden, but the plan was to always get her up
and moving and get some strength back. That never happened. She also
developed an e coli infection in a bed sore, and so that became another
battle to fight, along with the normal infections one picks up in the winter.
After the chemo was halted, she agreed to daily radiation treatments in
early November, mainly for pallative reasons, and that seemed to help
somewhat. Again, the intrathecal pump was a key to her making it through
Christmas and January. She would not have made it longer if the pain was
still 7-9. Hospice was discussed several times, and calls were made, but
they were never needed. In the middle of January, she went to a nursing home
for rehabilitative plans, but came back to the hospital January 26 due to
edema and a purple color in her feet. She also had a pulmonary embolism in
January, which had to be battled too. On Saturday, January 28, she asked
that all liquids, meds, etc. be stopped, and that she just wanted to be
comfortable. Dilaudid and morphine were what allowed her to make it
peacefully through the last few days, and a small amount of oxygen to keep
her breathing painfree.
My advice, at the end of the day, is to immediately read everything you
can get your hands on, starting with this board, PanCAN, etc., to constantly
pursue solutions, to push harder for test results, and not to wait for
other's decisions on your life. Why do you (the medical community) put up
with the waiting on this cancer? Others on this board have also complained
bitterly at the slowness of the 'process'. How can you wait, when you know
this is an extremely aggressive cancer, and days and hours may be critical to
starting a procedure that will shrink the tumor so surgery can occur. We
literally lost months, waiting. Shame on you for not banding together as a
national community (and I don't mean PanCAN - God Bless you!) to fight this
disease, and disseminate vital information routinely to the field. Isn't
32,000 people every year enough? How many do you need to die to get a plan
together? And to those of you who can't take the time to patiently or
compassionately deal with this scared patient, get out of the business. Go
into reseach where you don't have to look them in the eye and try to calm
their fears. But to those of you who battle in the trenches every day,
caringly and compassionately, against the terrible odds, please don't give
up. There will be a cure for this beast, and there will be genetic or other
tests developed to indicate tendancies to PC. Donate to PanCAN, wear purple,
don't ever give up hope.
I want to again thank all of you on this board for your unsolicited
advice and free sharing of personal and intimate information. You answered
so many of our unanswered questions, and our knowledge of this beast grew
quickly. We, like all others, only wish that knowledge meant a cure, but it
was not to be for Margaret. But, you will always be our heroes. Those of
you who are still fighting, and winning, the good fight, and those of you
who, even though in great emotional pain, have shared your experiences so
that others can benefit. Maryg, Luis Belo, Carol (tx), Blue Bird, Just Me
Jill, Wielly, elismoser, Mal, Irmy's Bill, darlene-ca, Johnny Jr, Brad
Livestrong and so, so many others, you gave us hope when there was none,
understanding when it was impossible to understand, and comfort at the end,
when all there is to do is cry.
My only gift, and a small one at that, is to pass to you what was passed
to me many years ago. In the middle of several simultaneous tragic events in
my life (divorce papers, loss of job, father's death, sister dx w/leukemia),
I opened a fortune cookie and it simply said, 'Happiness is in your future.'
I still carry that with me today, and although it didn't happen the next day,
or month, or even the next year, happiness did return to my life. I wish
that simple gift too, for each of you, our heroes, and your loved ones,
either now in this life, or when you get to where you are going.
Mike & Krista
Posted 04/11/2006 03:20 pm by Mike & Krista
E-mail Address: mccormick@1scom.net
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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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