may 30,2009
graduation has come and gone. i had another clean (YES!) Cat scan on may 28. i've decided it's time to set another goal. pat and dr have challenged me to run the 5K for the Hirshberg Foundation in LA in October. i'm not sure they remember how old i am, and i'm not telling. also, i've never been a runner. my only claim to fame is that i held (briefly) two national records in swimming....i was 10 years old. so in other words, i peaked at 10 and haven't done a noteworthy thing since!
dr thought he'd help me by setting up a workout schedule for me. so i started walking the route he set up for me. i thought i was doing great. i would take my favorite dog, bunny, lace up my shoes and head out. i didn't think it was hard at all. it only took about 40 minutes on my first walk and each day i got faster. i guess i got too fast because Dr asked what route i was doing. when i told him he started laughing.....what i thought was actually 3 miles was only 1.6 miles! it's not as much fun now and i'm really slow. every now and then, i run for about a minute. the next morning chris has to help me out of bed. i wish i hadn't told everybody that i was training for this race......
Wednesday, June 10, 2009
had the surgery, now what?
since the cancer had already spread to the liver, i was told my prognosis was grim. i met with an oncologist and he said i had "single digits" in months to live. he said i would only be offered standard treatment and i wasn't eligible for any clinical trials. i told him that my daughter would graduate from Notre Dame in May. he said i shouldn't plan on being there. my husband's response was, you don't know my wife very well, and the fight began.
i only had one prayer in those first days. i begged God for some time with chris and my children. i was told again and again that i wouldn't have that time. so chris, viewed by some as a bit of a pit bull, started doing some research. we started travelling from one comprehensive cancer center to another. in the beginning, no one had anything remotely hopeful to share with us, so we asked for prayers....and more prayers.
what we encountered was a tremendous swell of support from family and friends. i tried just about everything anyone suggested. i had chemo and radiation. i was massaged, had reflexology, healing touch. i was rubbed with essential oils. i drank mangosteen, downed supplements, ate blueberries. i lit candles from the grotto at Notre Dame, i used holy water from Lourdes. we devoured every article on pancreatic cancer that was sent our way. most of them were not very encouraging. but those that sent them were always encouraging. they made me feel i could be in that 5% that survived.
every time i prepared for a CAT scan, i invited friends and family to a prayer service. i witnessed all these faith filled people join our family in prayer that my scan would be clean so i could continue treatment. preparing for a scan scared the holy crap out of me! i would leave these prayer services filled with peace and strength. at these services, people would often touch me and give me a prayer. my day planner is filled with these prayers.
i never really liked being the center of attention, but suddenly i was. people showered me with love and concern. i have saved each card, note, book, and gift i've been given. many of these i share with others who have been diagnosed with this horrible disease.
i can't even begin to thank all the people that have been part of this journey. so many people have touched my life in the last 3 years. some of them were strangers to me. some of them were co-workers, some of them were family. all of them have become my friends. they took me to chemo, they fed my family, they loved my children, they listened and supported my husband. they gave me the opportunity to continue to work. that gave me a reason to get out of my "jammies" and feel normal and care for someone else. they cleaned my house, they gave me frequent flier miles, they gave me encouragement and the strength to fight. the sent me emails, the texted me, friended me on Facebook, and embraced my children when they were scared.
this fight isn't over. i am currently in the vaccine program at Johns Hopkins Hospital in Baltimore. the purpose of this vaccine is to find and kill any microscopic pancreatic cancer cells still in my body. i can get a vaccine every 6 months as long as my CAT scan is clean. my oncologist at JH is Dr. Dan Laheru. what a great man! he is patient, kind, empathetic and always available if you need him. he was one of the first people to offer me HOPE.
i not only went to katie's graduation but i was also at dan's graduation in May of this year. i spent a lot of that weekend at that beautiful Notre Dame grotto on my knees in thanksgiving. i am so awed by His goodness. every morning i would walk to the grotto and light a candle for all you wonderful people that prayed so hard for me. i felt like i took a little part of each of you with me. i bawled like a baby most of the weekend.....but they were tears of joy and gratitude.
i only had one prayer in those first days. i begged God for some time with chris and my children. i was told again and again that i wouldn't have that time. so chris, viewed by some as a bit of a pit bull, started doing some research. we started travelling from one comprehensive cancer center to another. in the beginning, no one had anything remotely hopeful to share with us, so we asked for prayers....and more prayers.
what we encountered was a tremendous swell of support from family and friends. i tried just about everything anyone suggested. i had chemo and radiation. i was massaged, had reflexology, healing touch. i was rubbed with essential oils. i drank mangosteen, downed supplements, ate blueberries. i lit candles from the grotto at Notre Dame, i used holy water from Lourdes. we devoured every article on pancreatic cancer that was sent our way. most of them were not very encouraging. but those that sent them were always encouraging. they made me feel i could be in that 5% that survived.
every time i prepared for a CAT scan, i invited friends and family to a prayer service. i witnessed all these faith filled people join our family in prayer that my scan would be clean so i could continue treatment. preparing for a scan scared the holy crap out of me! i would leave these prayer services filled with peace and strength. at these services, people would often touch me and give me a prayer. my day planner is filled with these prayers.
i never really liked being the center of attention, but suddenly i was. people showered me with love and concern. i have saved each card, note, book, and gift i've been given. many of these i share with others who have been diagnosed with this horrible disease.
i can't even begin to thank all the people that have been part of this journey. so many people have touched my life in the last 3 years. some of them were strangers to me. some of them were co-workers, some of them were family. all of them have become my friends. they took me to chemo, they fed my family, they loved my children, they listened and supported my husband. they gave me the opportunity to continue to work. that gave me a reason to get out of my "jammies" and feel normal and care for someone else. they cleaned my house, they gave me frequent flier miles, they gave me encouragement and the strength to fight. the sent me emails, the texted me, friended me on Facebook, and embraced my children when they were scared.
this fight isn't over. i am currently in the vaccine program at Johns Hopkins Hospital in Baltimore. the purpose of this vaccine is to find and kill any microscopic pancreatic cancer cells still in my body. i can get a vaccine every 6 months as long as my CAT scan is clean. my oncologist at JH is Dr. Dan Laheru. what a great man! he is patient, kind, empathetic and always available if you need him. he was one of the first people to offer me HOPE.
i not only went to katie's graduation but i was also at dan's graduation in May of this year. i spent a lot of that weekend at that beautiful Notre Dame grotto on my knees in thanksgiving. i am so awed by His goodness. every morning i would walk to the grotto and light a candle for all you wonderful people that prayed so hard for me. i felt like i took a little part of each of you with me. i bawled like a baby most of the weekend.....but they were tears of joy and gratitude.
from the beginning.....
i've been asked to blog a bit about my journey with pancreatic cancer. i can't find the journal i did when i was first diagnosed. this is how i remember it....
in august 2006 i had an episode of pancreatitis that i just couldn't shake. i had been having episodes of pancreatitis for 10 years but there was something different about this one. i was admitted to the hospital and all my scans were clean. but i still wasn't feeling any better. then i became jaundiced and that seemed to get everyone's attention fast.
i was transferred to cleveland clinic where they put in a stent. i felt a little better but still not great. then they did an endoscopic ultrasound and they saw a pancreatic mass. i was quickly sent to a wonderful, kind, highly skilled surgeon named conrad simpfendorfer. i swear i didn't make up that name! after lots of tests and discussions, i was scheduled for a whipple surgery. i'll spare you the gory details but will tell you it's a huge surgery...some organs come out and some are rearranged. but it was my best chance to fight this horrible disease.
on october 5 when they began surgery, they noticed a lesion on my liver. they biopsied it and it came back negative for cancer, so they proceeded with the whipple surgery. five days after surgery the surgeon came to me and said he had bad news. he said the final pathology reports on the liver came back as cancer. that meant i was Stage 4 and would not have been eligible for the whipple. i figured maybe he just saved my life.
in august 2006 i had an episode of pancreatitis that i just couldn't shake. i had been having episodes of pancreatitis for 10 years but there was something different about this one. i was admitted to the hospital and all my scans were clean. but i still wasn't feeling any better. then i became jaundiced and that seemed to get everyone's attention fast.
i was transferred to cleveland clinic where they put in a stent. i felt a little better but still not great. then they did an endoscopic ultrasound and they saw a pancreatic mass. i was quickly sent to a wonderful, kind, highly skilled surgeon named conrad simpfendorfer. i swear i didn't make up that name! after lots of tests and discussions, i was scheduled for a whipple surgery. i'll spare you the gory details but will tell you it's a huge surgery...some organs come out and some are rearranged. but it was my best chance to fight this horrible disease.
on october 5 when they began surgery, they noticed a lesion on my liver. they biopsied it and it came back negative for cancer, so they proceeded with the whipple surgery. five days after surgery the surgeon came to me and said he had bad news. he said the final pathology reports on the liver came back as cancer. that meant i was Stage 4 and would not have been eligible for the whipple. i figured maybe he just saved my life.
Tuesday, June 9, 2009
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