On 4/12/2008
Sedonalady wrote:
Hi Lori,
Lets talk about the good things. Your husband, as
like me with my wife, is being your advocate. As like me, he probably
holds a full time job. It's not easy but he needs to get on line and
start learning the vocabulary of the new world you have entered. Use
GOOGLE to search your cancer and choose only sites from "well known
places". If your run across a word you don't understand, google it.
Keep lots of ink in your printer and print up the pages you find. Your
neighbor can assist in that learning curve. Run your findings by her,
wow, what a blessing. As to your "instincts" TRUST THEM!!! You were
right all along. When you all visit the docs, start your conversation
by giving the healthcare providers unequivocal permission to speak to
your advocates and request your advocates to talk to the healthcare
providers. Prior to you visit, make a list of questions, it may be a
very long list. Under NO CIRCUMSTANCES should the healthcare provider
not clearly answer your questions. Under NO CIRCUMSTANCES should the
healthcare provider make you feel rushed or intimidated. This will be
the hardest part for you and your husband but this is where your husband and
neighbor can be of immeasurable assistance. This is also why
you/husband need to be educated in the vocabulary and potential
treatment plans. Trust your "BS" meter. The healthcare providers have
the responsibility to make YOU feel comfortable. If you already have a "feeling" that this provider will not be as you expect, have a
plan B. Start looking for a second opinion NOW! get it lined up.
Things
to do. Get a definitive diagnosis, not a guess from the doctor. Western
medicine really shines in diagnosing. Ask for the pathology report from
your previous surgery. Ask for the pathology report from your
paracentesis (abdominal fluid tap). Pathology reports/slides are the
holy grail of your treatment plan. Understand EXACTLY what cancer cell
you have. This correct info will drive your treatment plan. Insist on a
PET/CT scan immediately.
Watch you blood lab results.
Particularly you red and white blood count. Watch you "liver enzymes"
(google it), watch your protein counts (albumin, total protein). Watch
your kidney function tests "creatinine" Drink plenty of fluids and keep
well hydrated. Use this site
http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank"
to
monitor your kidney function. The "calculation" should be greater than
60. Drug dosing is dependent on how well your kidneys are working.
Doctors always assume they are functioning well. Make sure you KNOW
they are functioning well.
PPC is very similar to ovarian
cancer and the treatments are similar. My research suggests that the first line
of treatment is intraperitoneal chemotherapy. (Google it). See what
options your providers offer.
Nutrition and supplements are important and very often overlooked. This site has great info in that regard.
3
years ago, when our journey began in earnest, I ran across a person
Francine Milano, online, who had PPC and received treatment and
recovered. I haven't written to her in awhile and I'm not sure that the
address remains active but she was of enormous strength to me during
our "dark times". Try writing to her.
milano@electrobytes.net
Although you may have been delayed and misdirected by doctors, wife has been misdirected and mistreated by many "doctors". The time to act is now, don't allow them to delay your treatment, period!!!! We too were
angry. You will both feel overwhelmed and angry. Recognize it for what
it is and use that energy to meet your goal of tackling this cancer and
"kicking its butt". It is doable.
Although it is your journey and it is down
right frightening, there is an enormous community here to help you. Use
all of your resources and courage.
As for us, another leg of our journey starts tomorrow, Sunday.
We are traveling from our home in Sedona AZ to MD Anderson in Houston
Tx for another opinion and probable treatment. My wife of 26 years has
had 7 different chemo's and 2 major surgeries. She is an incredible
person and my best friend.
Please write as our discussion is therapeutic for me as well.
I included some links that I found helpful to me. Hopefully they will help you too.
Regards
Jim S
http://www.mnovarian.org/faq_recurrent_disease_treatment.htm
http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank"
http://www.hipectreatment.org/documents/hipec.php
http://www.cancer.gov/cancertopics
http://www.cancer.gov/newscenter/pressreleases/Ipchemotherap