Hello, hope everyone's enjoying these lovely autumn days! Just wanted to write about our trip to Sarah Cannon Cancer Center. So me, dad and gwen drove to Nashville tuesday night and had a great time staying with Lauren, Dillon, and Adrian. The next day we headed over to Sarah Cannon Cancer Center, where the waiting room was much smaller than at the other center, and the wait wasn't as long. We met with a gastroinestinal oncologist, Dr. Anthony Greco. He had a really great bedside manner, looked my dad in the eyes when he spoke to him, and overall, connected with my dad well. He is one of the directors of the centers, and is very knowledgable of the newest clinical trials for pancreatic cancer and is up to date with other successful treatments. He recommended my dad take the chemotherapy drug Gemzar (gemcatibine) and the pill Tarceva. Gemzar is supposedly a milder form of chemotherapy, with less severe side effects, which he will get an injection of once a week, for three weeks in a row. The pill Tarceva he will take every day, and we're told it also has mild side effects, so that was very good news. The combination of both drugs have been proven successful in Stage IV Pancreatic Cancer, and DR. Greco feels that it could only benefit and ensure dad to be cured of his Stage III cancer. This treatment option is different from the one we got from West Clinic, which was to use Gemzar and 5-FU. 5-FU is more invasive and Dr. Greco feels that it isn't necessary. Both treatments are for the next 5 to 6 months. On November 4th, we head back to Nashville for dad to get a CT scan. Depending on the results from that, we will decide the definite course of action for his treatment and when he will get started on it.
Sorry for the brief post, I will try to keep this up to date and more detailed! Take Care everyone!
-Kate
Monday, October 25, 2010
Friday, October 22, 2010
Choose to Live a Life that Matters
Hello, I plan on updating about the Nashville trip first thing in the morning, just wanted to share these words of wisdom before I head off to bed. I forget where I saw this and who the author is, but its meant to be seen and heard. Enjoy.
There will be no more sunrises, no minutes, hours or
days.
All the things you collected, whether treasured or
forgotten, will pass to someone else.
Your wealth, fame and temporal power will shrivel to
irrelevance. It will not matter what you owned or what
you were owed.
Your grudges, resentments, frustrations, and
jealousies will finally disappear. So, too, your
hopes, ambitions, plans, and to-do lists will expire.
The wins and losses that once seemed so important will
fade away.
It won’t matter where you came from, or on what side
of the tracks you lived, at the end. It won’t matter
whether you were beautiful or brilliant. Even your
gender and skin color will be irrelevant.
So what will matter? How will the value of your days
be measured?
What will matter is not what you bought, but what you
built; not what you got, but what you gave.
What will matter is not your success, but your
significance.
What will matter is not what you learned, but what you
taught.
What will matter is every act of integrity,
compassion, courage or sacrifice that enriched,
empowered or encouraged others to emulate your
example.
What will matter is not your competence, but your
character.
What will matter is not how many people you knew, but
how many will feel a lasting loss when you’re gone.
What will matter is not your memories, but the
memories that live in those who loved you.
What will matter is how long you will be remembered,
by whom and for what.
Living a life that matters doesn’t happen by accident.
It’s not a matter of circumstance but of choice.
Choose to live a life that matters.
Thursday, October 14, 2010
Apple Picking, Doctor Visiting, Birthday Partying
Hey everybody,
Sorry to be posting so late in the week- it's sure been busy! Last Thursday, we went to my dad's appointment with his surgeon. We call him the "I'm okay, you're okay" doctor- he never gets too concerned about any issue that has come up in my father's recovery from his procedure, despite the home care nurse's suggestions or our own personal frustrations. No matter what the case, he is always as cool as a cucumber. Anyway, we write up the Lunsford List for each visit, which contains a bunch of different key topics we bring up (most are repeats that we keep asking each time, hoping for a different answer) and try to get them all knocked out. So this past week's visit was a success, his lab results came back from the West Clinic: his red and white blood cell counts were good, so he could stop taking the iron pills he was prescribed since leaving the hospital, and his cholesterol was at 170, so he doesn't have to worry about taking medication for that right now. A huge progress in his recovery has been the output from his wound decreasing to a very small amount. The doctor ordered less Pancrease pills for him to take when he eats, as well as the injections he needs to have every day. Also, he recommended the Wound Vac come off fairly soon, and to do a wet to dry dressing twice a day after that. To celebrate this great news, we headed over to Jones Orchards (first time my dad went out of the house, other than to the doctor in a couple months) where I picked apples and dad watched for a while.
That night I made homemade apple sauce. You boil the apples, peel off the skin and blend them in a food processor til creamy, then sprinkle cinnamon! Delicious and easy.
So on 10-10-10 this year, my dad celebrated his 52nd birthday. My sister Lauren, her fiancee Dillon, and their almost 3 year old Adrian came in from Nashville for a couple days. That night, my dad and Gwen's friends and family came over for dinner, music and campfire. It was a beautiful, unseasonably warm day, with lots of love and laughter.
This Monday, my dad has got his Wound Vac taken off, which is a huge step forward! I have been changing his dressing and keeping tabs on his output. His wound is drastically shrinking and becoming more and more shallow, it's really exciting!
We also loved having my older sister here for a couple days. Lauren's visit was incredible, her little boy brings so much light and life into the household, and Dillon and my dad get along so well, jamming together and hanging out. When they're here, there is a totally different dynamic in the house, it is so joyful and alive. My dad is so proud of Lauren and loves her so much, I really hope it will work out that he will get treated in Nashville, so we'll get to stay with them for several months. Next Wednesday, October 20th, we will be driving in to see an oncologist at Sarah Cannon, so until then.. thanks for all of the support and outpour of love from everyone. It is amazing and overwhelming and we are all just so grateful that my dad has touched so many.
Til next week, hope all is well with everyone!
Peace & Love,
-Katie
Thursday, October 7, 2010
My older sister Lauren wrote this to me last night, and I feel like it is just as important to share her perspective of the past few months with my dad:
My Dad has cancer. Four words, one short sentence, a million meanings to so many lives. Hearing those words was one of the moments that you hear about people having, or in movies when something major happens to the main character. That moment in your life when your life separates into two different parts: the part before this moment, the days, weeks, months and years that led up to this conversation. Then there's your new life, the life you live that begins the moment after you hear those words: "It's cancer." To describe the initial feeling best I'd incline those of you who have never experienced this to watching your entire world crumble in front of you like a cookie in your hand. You break into a million pieces. This is my story, told from my perspective, of how my life has changed since my dad was diagnosed with Stage III Pancreatic Cancer.
Dad had come to visit us here in Nashville on a Monday morning much like he had done at least once a month for the past few years. He always came bringing lots of goodies, and always walked around our house making a list of home improvements he'd help us take care of while he was here. If there was anything you know about my Dad it's how active he is, he literally can't sit still and is always pursuing different projects and completely different tasks. He's always driven us everywhere, he was the one to come to my Marching Band competition when my Mom didn't, I'll always remember that. He took Allie to soccer practice, he took Kiki to Tai Kwon Do, he was the parent that was always hands on. We've gotten along the majority of our lives, save a short period of time when I was younger and dabbling in drugs and irresponsibility. He and my step mother Gwen decided together to kick me out of the house in an effort to force me to grow up, and even though at the time I was so angry at him for it, that initially led to my having to learn to provide for myself and take care of myself, so I now can look back and thank him. Anyway, back to that weekend, we had a good time, went grocery shopping, had a little backyard BBQ, typical summer stuff we all did when he came over. I told him about a Beatles cover night Dillon's band was playing the next week, and to my surprise he said he and Gwen might come. Like I said, he did come to town frequently to see us, but never two weekends in a row (it's an over 3 hour drive from his home in Memphis to ours in Nashville). I was so excited when low and behold that Saturday he and Gwen showed up! We had a great time, went to dinner and shared a pitcher of margaritas, really just enjoying each others company as adults. I didn't notice anything out of the ordinary at all, we had a great time at Dillon's show and the next night they went home. I've re-thought about that weekend in my mind over and over thinking of any hints of something being wrong-- his not eating, being more tired than usual, etc... nothing out of the ordinary other than the back to back visits. They left and I didn't think anything was going on.
We talked on the phone nearly every day after that, a text here and there just saying hi. He and my sister Allie had been having some issues all summer long, I've been there (to a lesser extent) so I was involved in a lot of the arguments talking both sides down, etc. I remember one phone call in particular that he was so upset, she had told him in a fit of rage that she hated him and that me and Kiki hated him for divorcing mom (which enraged me, I had spent years coming to terms with that so how dare she speak on my behalf). I assured him this one true but remember just feeling so bad for him, being a parent myself I'd be devastated if Adrian ever told me he hated me and I ruined his life, knowing now how much parents (well, the good ones) love and sacrifice for their children and how we only want our children to be happy. I didn't understand then, but I sure as hell understand now. Him and my mom still don't get along which is hard on everyone, near ten years later, but that's a whole other story.
Dad casually mentioned to me that he was jaundice and was getting tested for hepatitus one day during one of our phone conversations a couple of weeks after his last visit. I was surprised, not understanding what he meant that his skin and eyes were a strange yellow color and he has dark urine. I looked up all the symptoms online, he claimed he was not in any kind of pain or anything, so I didn't really think too much of it other than joking to Dillon about Pamela Anderson having hepatitus and how I wondered how he could've gotten it. It wasn't a life threatening disease by any means, so I wasn't too alarmed. He mentioned that he had a doctor's appointment to run some more tests, but was very casual about everything and in hindsight probably sugarcoated a lot as to not alarm me if it did turn out to be hepatitus. He went in and had a stint put in because there was some blockage on his bile duct (his what? Again, thank you Google.) He said he felt much better and wasn't jaundice anymore almost over night so I thought ok, awesome, no big deal. The hep test came back negative, so he had another appointment to figure out what was causing the blockage. Only then was the word cancer even mentioned, and as soon as he brought it up he dismissed it saying the margins had come back negative, so I didn't focus on that as a possibility at all.
Well, I was wrong. The weekend before his scheduled Whipple-- the second most invasive, major surgery a person can have next to a liver transplant-- he went up to Brooklyn on a spur of the moment visit to see Kiki, my Grandma Anne and his brother Uncle Jimmy. Kiki says she sensed he thought something was wrong that weekend, even commenting to her that she didn't have any pictures of him up in her apartment (very unlike him). I knew he was having surgery, AGAIN he made it sound and seem almost routine, to go in and take out the blockage, never leading me to believe it was a tumor or the extent of how extremely serious this major surgery was. I didn't even look it up, know it had a name, nothing at this point.
I texted him early that Monday morning, August 9th, the day I'll never forget, wishing him luck with his surgery and telling him I love him and to call me when he got home. Again, I cannot reiterate enough how completely unprepared I was to hear what I was about to hear. I had been texting my step mom Gwen and my Uncle Jimmy that day, they were keeping me updated on how the surgery was going. Around 3 pm that afternoon Dillon, Adrian and I went to get in the car to go get some lunch. I grabbed my phone which I hadn't had on me for the past couple of hours to find three or four missed calls from Gwen and my sister Kiki, and several text messages.
"They think it's cancer."
I couldn't believe it. As we got in the car, I was still fairly calm. Tried calling Gwen three or four times, it was busy and it went to voicemail (I assumed she was on the phone letting other people know what was going on.) I called Kiki, who was already in tears and practically inconsolable, and tried to get out of her what was going on. She said they found a pea sized tumor wrapped around his bile duct, which is what caused the jaundice. They were able to remove it in this procedure that was called the Whipple.
"Whipple surgery is the most commonly performed operation to treat pancreatic cancer. During the whipple procedure, the head, and sometimes the body of the pancreas is removed, along with the duodenum and gallbladder, part of the jejunum, stomach bile duct and lymph nodes near the pancreas. The remaining bile duct is then attached to the small intestine to allow bile from the liver to continue entering the small intestine. Whipple procedure surgery is a complicated process that requires a great deal of skill to perform. '
Dad was still in the hospital in recovery after the four hour surgery. I called my mother, and that's when it hit me, the words coming out of my mouth "Dad has cancer"... I never thought I'd say it, I never thought it'd happen to me, to my family, to my Dad who I loved so much. I started crying and couldn't really stop, but somehow managed to. We got back to the house and I immediately threw some clothes in a bag and hit the road to Memphis to get to the hospital. A shaky three and a half hours later I got there, and was met by Gwen's siblings Kristi and Jimmy in the hospital waiting room. Allie and Gwen were there too, and had been waiting since 8 am (it's now 7/8 pm, they still haven't been called in to see him in the ICU). While all this is happening I'm googling the Whipple on my phone, learning about it for the first time and not understanding why my Dad didn't tell me how serious it was. I know theoretically he didn't want to worry me, but I almost felt worse being taken so extremely off guard.
Finally the nurse comes in and tell us that we can go see him, but warns us that he is on a lot of morphine and probably won't even remember us being there. We get to room 306 in the ICU and there he is, still looks like my Dad, laying in the hospital bed hooked up to tons of tubes and wires. My Uncle Jimmy is in there with him (I didn't even know Jimmy was in town for business, just assumed he was relaying information from Gwen to me via phone). Allie had a rose with her for him, and she started crying uncontrollably seeing him, and so I was put in the position I needed to step up and take as the oldest of the three of us. I took her outside and joked with her to make any confessions to Dad that she needed to now because he won't remember them in the morning.
It's a helpless feeling seeing your parent laying in the hospital bed in pain. He could barely speak, his teeth were clenched so tight and he absolutely couldn't move, the pain was that bad. I wished it was me instead. We left him after a few minutes, Gwen spent the first of what would be many nights in the hospital, and I went back to the house to make sure the twins were in bed and would be up and out the door for school in the morning.
Once I was there, alone in his house, is when it hit me. I put one of his shirts on, laid in his bed, and completely let myself go. I cried harder than I've ever cried in my life. I physically couldn't cope, I threw up, I had trouble breathing, and any time I'd calm myself down I'd get triggered by something as small as a note he left on the door saying he was 'in a conference call, shhh!' I pictured my whole life without my Dad there, a thought that had NEVER occurred to me before this happened. That was a life I didn't want to live. I talked to my sister Kiki on the phone for hours. We leaned on each other. The next day I was at the hospital for a solid twelve hours, where else would I be? He didn't talk much and was in a lot of pain. That's when the surgeon finally came in to check on his progress and to let him know what he suspected was going on.
We knew there were two types of cancer it could be, one with slightly better statistical chances of survival than the other, but both bad (not that there is a GOOD cancer, but some are obviously more treatable than others). It could be bile duct cancer, or pancreatic. That was the first time that type was mentioned to me. Of course, my first thought as would be most peoples, was Holy Shit, that is what Patrick Swayze died of last year. I instantly pictured all of the magazine covers showing him so frail and thin, I remembered how it seemed as though he was diagnosed and died within a VERY short period of time, and my world once again endured another emotional earthquake. He said in his opinion, because the lab tests were not back yet he couldn't say for certain, it was pancreatic.
Fuck.
I stayed in Memphis for a few more days, and eventually headed home to Nashville because I had to get back to work. I called every single day to check in, and unfortunately it was typically he's doing the same for the first few days. He finally gained enough strength to begin walking, and was finally off the liquid diet. On my way into work the following Wednesday, about a week and a half since the surgery, I got the bad news that there was a leak from the pancreas and that they had to bring him back in and reopen the wound that was so painful an was finally beginning to heal again. UGHHHH! My poor dad! Completely back to square one healing wise.
He remained in the hospital for a total of 32 days. Throughout this time my grandma had flown down to visit for a week with my sister Kiki, who decided to move down to Memphis to be with him and to help out around the house while Gwen worked. Gwen spent nearly every night sleeping in the hospital with him, it was very sweet and kind of heartbreaking.
My sister Kaitlin (Kiki) is an actual angel. I've never met someone so selfless and loving and caring. She is the glue that has kept my family together, she has always been sweet being the middle of the three of us girls. She's an old soul who had always had a very special connection to my father. She was the one I worried most about, and she is the one who has stepped up to the plate and is taking care of him now. I've never been more grateful. She has always been kind and caring, but this is the ultimate gift she is giving us. She was with him everyday in the hospital. She gives him his medicine, she changes his wounds, she cooks and cleans and gives him his shots, she does everything a home nurse would do for him and expects nothing in return. My sister Allie has been great through, it's got to be so hard for her to see this happening, and they have since made amends.
Adrian and I went to visit as a surprise back in early September once my Dad was finally released from the hospital. He had lost about 40 pounds, which was extremely alarming as I was not expecting it (as I put it to him it's not that he looks sick now, he just looks like an after on the Biggest Loser). He doesn't sleep well because of the wound vac, and though emotions run high lately he is holding himself together miraculously well. He has good days and bad, some days more painful than others. The outpouring of love around him has been so comforting, over 50 cards as of when we visited were hungup around the living room. People came several times a day with meals for the family. So much love and support.
To catch us up to the current state of affairs, he still had the wound vac in which is annoying but is actually helping heal the wound from the second surgery much faster than it would otherwise. He has a nurse come every few days to change it out, and it should be done within the next three weeks or so. He met with an Oncologist in Memphis the past Monday (which was also my sister Allie's 18 birthday) and the doctor was very optimistic. They think they removed all of it, and are going to proceed with chemotherapy as soon as the wound vac is healed.
Statistics are very scary, but with cancer especially they are not really very accurate. Typically pancreatic cancer affects people 60-80 years old, so the survival rate for someone who is 80 being compared to my non-drinking non-smoking very active 51 year old father are obviously not the same. The fact that only 20% of patients diagnosed with this type of cancer are even elidgeable for the Whipple procedure proves that although this is a scary and serious kind of cancer to have, he's already on the more hopeful side of the spectrum because he qualified for and had this surgery. The fact that all of these studies are based off of survival rates involving treatment are already 6+years old, considering most survival is based on a 5 year rate The medicine and treatment from 5 years ago has progressed so much since then and so many new treatments are available now, there's no way to know how effective or ineffective they are and survival rates are really a mind over matter statistic that I refuse to believe or buy into. He has a meeting with an Oncologist here in Nashville on October 20, and then we will decide where he will be treated and will take the necessary steps forward from there.
I go back and forth between optimism, pessimism, and apathy. It's not that I never don't care, but I focus on work and Adrian and try not to let my every thought be covered in cancer. Right now I know if anybody can beat this disease, it's his. We will get through this. Everyday on my drive to work I pass a sign on the interstate that says "The center Cancer hates the most." in reference to the Vanderbilt/Ingram clinic. Treatment is going to suck, chemo is no fun, but if it adds years to his life then what other option is there? Both of my grandfather's died of cancer, my Grandpa Louis on my Dad's side of Blood Cancer and my Grandpa Owen on my mother's side of Brain Cancer which they think started out as Melanoma. I was younger then and didn't research Cancer as much, didn't ask as many questions, didn't understand. I just knew they were older, had lived their lives, and got sick and died, like most grandparents do and all will eventually. For this to happen to my young, active Dad-- is it fair? No, it's not. But life is not fair, and pitying ourselves won't rid his body of this disease. I'm choosing to take the humorous route.
Basically where I'm at now is Cancer might kill my Dad. But, it might not. And that but is what keeps us all going. Cancer doesn't care who you are, and it doesn't pick its victims because they did anything wrong. It is random, and it is serious, but it can be treated. Mind over matter. Knowledge is power, and everyone in our family has done hours and hours of research. I know more about pancreatic cancer now than I know about most things.
As I wrote to my Dad in a letter, he is not in this alone. We are here with him. We are fighting this behind him, in front of him, and on both of his sides. We will be there throughout it all, and we have never loved him more.
More updates to follow.
To read more about Pancreatic Cancer go to:http://www.cancer.gov/cancertopics/cancerlibrary/what-is-cancer
http://en.wikipedia.org/wiki/Pancreatic_cancer
My Dad has cancer. Four words, one short sentence, a million meanings to so many lives. Hearing those words was one of the moments that you hear about people having, or in movies when something major happens to the main character. That moment in your life when your life separates into two different parts: the part before this moment, the days, weeks, months and years that led up to this conversation. Then there's your new life, the life you live that begins the moment after you hear those words: "It's cancer." To describe the initial feeling best I'd incline those of you who have never experienced this to watching your entire world crumble in front of you like a cookie in your hand. You break into a million pieces. This is my story, told from my perspective, of how my life has changed since my dad was diagnosed with Stage III Pancreatic Cancer.
Dad had come to visit us here in Nashville on a Monday morning much like he had done at least once a month for the past few years. He always came bringing lots of goodies, and always walked around our house making a list of home improvements he'd help us take care of while he was here. If there was anything you know about my Dad it's how active he is, he literally can't sit still and is always pursuing different projects and completely different tasks. He's always driven us everywhere, he was the one to come to my Marching Band competition when my Mom didn't, I'll always remember that. He took Allie to soccer practice, he took Kiki to Tai Kwon Do, he was the parent that was always hands on. We've gotten along the majority of our lives, save a short period of time when I was younger and dabbling in drugs and irresponsibility. He and my step mother Gwen decided together to kick me out of the house in an effort to force me to grow up, and even though at the time I was so angry at him for it, that initially led to my having to learn to provide for myself and take care of myself, so I now can look back and thank him. Anyway, back to that weekend, we had a good time, went grocery shopping, had a little backyard BBQ, typical summer stuff we all did when he came over. I told him about a Beatles cover night Dillon's band was playing the next week, and to my surprise he said he and Gwen might come. Like I said, he did come to town frequently to see us, but never two weekends in a row (it's an over 3 hour drive from his home in Memphis to ours in Nashville). I was so excited when low and behold that Saturday he and Gwen showed up! We had a great time, went to dinner and shared a pitcher of margaritas, really just enjoying each others company as adults. I didn't notice anything out of the ordinary at all, we had a great time at Dillon's show and the next night they went home. I've re-thought about that weekend in my mind over and over thinking of any hints of something being wrong-- his not eating, being more tired than usual, etc... nothing out of the ordinary other than the back to back visits. They left and I didn't think anything was going on.
We talked on the phone nearly every day after that, a text here and there just saying hi. He and my sister Allie had been having some issues all summer long, I've been there (to a lesser extent) so I was involved in a lot of the arguments talking both sides down, etc. I remember one phone call in particular that he was so upset, she had told him in a fit of rage that she hated him and that me and Kiki hated him for divorcing mom (which enraged me, I had spent years coming to terms with that so how dare she speak on my behalf). I assured him this one true but remember just feeling so bad for him, being a parent myself I'd be devastated if Adrian ever told me he hated me and I ruined his life, knowing now how much parents (well, the good ones) love and sacrifice for their children and how we only want our children to be happy. I didn't understand then, but I sure as hell understand now. Him and my mom still don't get along which is hard on everyone, near ten years later, but that's a whole other story.
Dad casually mentioned to me that he was jaundice and was getting tested for hepatitus one day during one of our phone conversations a couple of weeks after his last visit. I was surprised, not understanding what he meant that his skin and eyes were a strange yellow color and he has dark urine. I looked up all the symptoms online, he claimed he was not in any kind of pain or anything, so I didn't really think too much of it other than joking to Dillon about Pamela Anderson having hepatitus and how I wondered how he could've gotten it. It wasn't a life threatening disease by any means, so I wasn't too alarmed. He mentioned that he had a doctor's appointment to run some more tests, but was very casual about everything and in hindsight probably sugarcoated a lot as to not alarm me if it did turn out to be hepatitus. He went in and had a stint put in because there was some blockage on his bile duct (his what? Again, thank you Google.) He said he felt much better and wasn't jaundice anymore almost over night so I thought ok, awesome, no big deal. The hep test came back negative, so he had another appointment to figure out what was causing the blockage. Only then was the word cancer even mentioned, and as soon as he brought it up he dismissed it saying the margins had come back negative, so I didn't focus on that as a possibility at all.
Well, I was wrong. The weekend before his scheduled Whipple-- the second most invasive, major surgery a person can have next to a liver transplant-- he went up to Brooklyn on a spur of the moment visit to see Kiki, my Grandma Anne and his brother Uncle Jimmy. Kiki says she sensed he thought something was wrong that weekend, even commenting to her that she didn't have any pictures of him up in her apartment (very unlike him). I knew he was having surgery, AGAIN he made it sound and seem almost routine, to go in and take out the blockage, never leading me to believe it was a tumor or the extent of how extremely serious this major surgery was. I didn't even look it up, know it had a name, nothing at this point.
I texted him early that Monday morning, August 9th, the day I'll never forget, wishing him luck with his surgery and telling him I love him and to call me when he got home. Again, I cannot reiterate enough how completely unprepared I was to hear what I was about to hear. I had been texting my step mom Gwen and my Uncle Jimmy that day, they were keeping me updated on how the surgery was going. Around 3 pm that afternoon Dillon, Adrian and I went to get in the car to go get some lunch. I grabbed my phone which I hadn't had on me for the past couple of hours to find three or four missed calls from Gwen and my sister Kiki, and several text messages.
"They think it's cancer."
I couldn't believe it. As we got in the car, I was still fairly calm. Tried calling Gwen three or four times, it was busy and it went to voicemail (I assumed she was on the phone letting other people know what was going on.) I called Kiki, who was already in tears and practically inconsolable, and tried to get out of her what was going on. She said they found a pea sized tumor wrapped around his bile duct, which is what caused the jaundice. They were able to remove it in this procedure that was called the Whipple.
"Whipple surgery is the most commonly performed operation to treat pancreatic cancer. During the whipple procedure, the head, and sometimes the body of the pancreas is removed, along with the duodenum and gallbladder, part of the jejunum, stomach bile duct and lymph nodes near the pancreas. The remaining bile duct is then attached to the small intestine to allow bile from the liver to continue entering the small intestine. Whipple procedure surgery is a complicated process that requires a great deal of skill to perform. '
Dad was still in the hospital in recovery after the four hour surgery. I called my mother, and that's when it hit me, the words coming out of my mouth "Dad has cancer"... I never thought I'd say it, I never thought it'd happen to me, to my family, to my Dad who I loved so much. I started crying and couldn't really stop, but somehow managed to. We got back to the house and I immediately threw some clothes in a bag and hit the road to Memphis to get to the hospital. A shaky three and a half hours later I got there, and was met by Gwen's siblings Kristi and Jimmy in the hospital waiting room. Allie and Gwen were there too, and had been waiting since 8 am (it's now 7/8 pm, they still haven't been called in to see him in the ICU). While all this is happening I'm googling the Whipple on my phone, learning about it for the first time and not understanding why my Dad didn't tell me how serious it was. I know theoretically he didn't want to worry me, but I almost felt worse being taken so extremely off guard.
Finally the nurse comes in and tell us that we can go see him, but warns us that he is on a lot of morphine and probably won't even remember us being there. We get to room 306 in the ICU and there he is, still looks like my Dad, laying in the hospital bed hooked up to tons of tubes and wires. My Uncle Jimmy is in there with him (I didn't even know Jimmy was in town for business, just assumed he was relaying information from Gwen to me via phone). Allie had a rose with her for him, and she started crying uncontrollably seeing him, and so I was put in the position I needed to step up and take as the oldest of the three of us. I took her outside and joked with her to make any confessions to Dad that she needed to now because he won't remember them in the morning.
It's a helpless feeling seeing your parent laying in the hospital bed in pain. He could barely speak, his teeth were clenched so tight and he absolutely couldn't move, the pain was that bad. I wished it was me instead. We left him after a few minutes, Gwen spent the first of what would be many nights in the hospital, and I went back to the house to make sure the twins were in bed and would be up and out the door for school in the morning.
Once I was there, alone in his house, is when it hit me. I put one of his shirts on, laid in his bed, and completely let myself go. I cried harder than I've ever cried in my life. I physically couldn't cope, I threw up, I had trouble breathing, and any time I'd calm myself down I'd get triggered by something as small as a note he left on the door saying he was 'in a conference call, shhh!' I pictured my whole life without my Dad there, a thought that had NEVER occurred to me before this happened. That was a life I didn't want to live. I talked to my sister Kiki on the phone for hours. We leaned on each other. The next day I was at the hospital for a solid twelve hours, where else would I be? He didn't talk much and was in a lot of pain. That's when the surgeon finally came in to check on his progress and to let him know what he suspected was going on.
We knew there were two types of cancer it could be, one with slightly better statistical chances of survival than the other, but both bad (not that there is a GOOD cancer, but some are obviously more treatable than others). It could be bile duct cancer, or pancreatic. That was the first time that type was mentioned to me. Of course, my first thought as would be most peoples, was Holy Shit, that is what Patrick Swayze died of last year. I instantly pictured all of the magazine covers showing him so frail and thin, I remembered how it seemed as though he was diagnosed and died within a VERY short period of time, and my world once again endured another emotional earthquake. He said in his opinion, because the lab tests were not back yet he couldn't say for certain, it was pancreatic.
Fuck.
I stayed in Memphis for a few more days, and eventually headed home to Nashville because I had to get back to work. I called every single day to check in, and unfortunately it was typically he's doing the same for the first few days. He finally gained enough strength to begin walking, and was finally off the liquid diet. On my way into work the following Wednesday, about a week and a half since the surgery, I got the bad news that there was a leak from the pancreas and that they had to bring him back in and reopen the wound that was so painful an was finally beginning to heal again. UGHHHH! My poor dad! Completely back to square one healing wise.
He remained in the hospital for a total of 32 days. Throughout this time my grandma had flown down to visit for a week with my sister Kiki, who decided to move down to Memphis to be with him and to help out around the house while Gwen worked. Gwen spent nearly every night sleeping in the hospital with him, it was very sweet and kind of heartbreaking.
My sister Kaitlin (Kiki) is an actual angel. I've never met someone so selfless and loving and caring. She is the glue that has kept my family together, she has always been sweet being the middle of the three of us girls. She's an old soul who had always had a very special connection to my father. She was the one I worried most about, and she is the one who has stepped up to the plate and is taking care of him now. I've never been more grateful. She has always been kind and caring, but this is the ultimate gift she is giving us. She was with him everyday in the hospital. She gives him his medicine, she changes his wounds, she cooks and cleans and gives him his shots, she does everything a home nurse would do for him and expects nothing in return. My sister Allie has been great through, it's got to be so hard for her to see this happening, and they have since made amends.
Adrian and I went to visit as a surprise back in early September once my Dad was finally released from the hospital. He had lost about 40 pounds, which was extremely alarming as I was not expecting it (as I put it to him it's not that he looks sick now, he just looks like an after on the Biggest Loser). He doesn't sleep well because of the wound vac, and though emotions run high lately he is holding himself together miraculously well. He has good days and bad, some days more painful than others. The outpouring of love around him has been so comforting, over 50 cards as of when we visited were hungup around the living room. People came several times a day with meals for the family. So much love and support.
To catch us up to the current state of affairs, he still had the wound vac in which is annoying but is actually helping heal the wound from the second surgery much faster than it would otherwise. He has a nurse come every few days to change it out, and it should be done within the next three weeks or so. He met with an Oncologist in Memphis the past Monday (which was also my sister Allie's 18 birthday) and the doctor was very optimistic. They think they removed all of it, and are going to proceed with chemotherapy as soon as the wound vac is healed.
Statistics are very scary, but with cancer especially they are not really very accurate. Typically pancreatic cancer affects people 60-80 years old, so the survival rate for someone who is 80 being compared to my non-drinking non-smoking very active 51 year old father are obviously not the same. The fact that only 20% of patients diagnosed with this type of cancer are even elidgeable for the Whipple procedure proves that although this is a scary and serious kind of cancer to have, he's already on the more hopeful side of the spectrum because he qualified for and had this surgery. The fact that all of these studies are based off of survival rates involving treatment are already 6+years old, considering most survival is based on a 5 year rate The medicine and treatment from 5 years ago has progressed so much since then and so many new treatments are available now, there's no way to know how effective or ineffective they are and survival rates are really a mind over matter statistic that I refuse to believe or buy into. He has a meeting with an Oncologist here in Nashville on October 20, and then we will decide where he will be treated and will take the necessary steps forward from there.
I go back and forth between optimism, pessimism, and apathy. It's not that I never don't care, but I focus on work and Adrian and try not to let my every thought be covered in cancer. Right now I know if anybody can beat this disease, it's his. We will get through this. Everyday on my drive to work I pass a sign on the interstate that says "The center Cancer hates the most." in reference to the Vanderbilt/Ingram clinic. Treatment is going to suck, chemo is no fun, but if it adds years to his life then what other option is there? Both of my grandfather's died of cancer, my Grandpa Louis on my Dad's side of Blood Cancer and my Grandpa Owen on my mother's side of Brain Cancer which they think started out as Melanoma. I was younger then and didn't research Cancer as much, didn't ask as many questions, didn't understand. I just knew they were older, had lived their lives, and got sick and died, like most grandparents do and all will eventually. For this to happen to my young, active Dad-- is it fair? No, it's not. But life is not fair, and pitying ourselves won't rid his body of this disease. I'm choosing to take the humorous route.
Basically where I'm at now is Cancer might kill my Dad. But, it might not. And that but is what keeps us all going. Cancer doesn't care who you are, and it doesn't pick its victims because they did anything wrong. It is random, and it is serious, but it can be treated. Mind over matter. Knowledge is power, and everyone in our family has done hours and hours of research. I know more about pancreatic cancer now than I know about most things.
As I wrote to my Dad in a letter, he is not in this alone. We are here with him. We are fighting this behind him, in front of him, and on both of his sides. We will be there throughout it all, and we have never loved him more.
More updates to follow.
To read more about Pancreatic Cancer go to:http://www.cancer.gov/cancertopics/cancerlibrary/what-is-cancer
http://en.wikipedia.org/wiki/Pancreatic_cancer
Wednesday, October 6, 2010
All Things Must Pass
Hey there, my name is Kaitlin Buccini, and I am a 21 year old girl who moved from Brooklyn to Memphis to take care of my father, Eugene, this past August. Since a lot of people are very close to my dad and would like to know his progress, it seems to make sense to have this little journal to keep everyone updated. So I might as well start from the beginning..
Around July 4th, my dad began having some stomach pain. He was out vacationing, so he tried to pull through that holiday weekend. After a couple of weeks, he became jaundice, (when your skin and the whites of your eyes become yellow) so he knew something was very wrong. He went to the doctor who recommended him to a GI, where my dad had a test done that showed his bile duct was surrounded by a mass that closed it up. The GI did a procedure where they put a temporary stent in so that his bile duct could drain. Because of the location of the mass, the GI suggested it was probably cancer, but wasn't sure if it was bile duct or pancreatic. Thereafter, my dad saw a surgeon who recommended the Whipple Procedure to remove the mass.
My dad went in to Methodist Hospital on August 9th to get the Whipple procedure done. During the 6 hour surgery, they found a pea-sized tumor wrapped around his bile duct. They removed the tumor, and a nodule in his pancreas. After the pathology test results came back from the tumor, they concluded that it was pancreatic cancer. 9 days after he had his inital procedure, there was a complication where his small intenstines disconnected from his pancreas. They had to go back in for a second surgery and literally glued them back together (can you imagine what kind of glue they would use for that?! hopefully not elmer's or krazy..) which really set him back a lot. He had already been up and walking and eating before his second surgery, and then he was back at square one. This is when I decided to put my life on hold and move here to take care of him through his recovery.
It proved far more difficult the second time for my dad to recover. The Whipple Procedure is the second most aggressive surgery to go through, other than Liver, so it really took a lot of of him. He was very weak for a long time.. he couldn't walk for 2 weeks and was on a liquid diet for over a week and a half. It was a very long and trying time. All the while, he kept the best attitude that he was going to beat this thing. There was such a great outpour of people coming to visit, calling, sending letters and cards. There were even folks who brought meals over for a month! Without all the love and support from everyone around, I don't know what we would have done. After what seemed like a lifetime, (total 32 days in the hospital) my dad finally was able to come home!
Even though I was so incredibly happy for my dad to come home, I was also extremely nervous and anxious- in the hospital, he had a team of nurses, nurse aides, and doctors treating him and caring for him round the clock. I had never done anything like this before, so I had no idea what to expect. The good far outweighed the bad, my dad was able to wear comfy pjs (no more nightgowns!) was able to walk and sit outside, and be around his family and friends. Since the surgeon had to go in a second time, they weren't able to sew him back up, so they kept his wound open to heal from the inside out. Since the wound was so wide and deep, my dad had the Wound Vac put in to help speed up the healing time and lessen the risk of infection. He gets that changed by a home nurse who comes three times a week. My dad has a love/hate relationship with the wound vac, it has really sped up the wound recovery time, but it is a heavy device that weighs him down when he's walking and is keeping him from going out places (other than to doctor's appointments.) Hopefully, he only has a couple more weeks with it.
Fast forward to now, October 6th, I am happy to say my dad is doing very well, and is becoming more and more independent every day. It is a very long process, and he still has a lot of recovering to do, but we're all very hopeful that he's progressing.
This past Monday, Oct 4th, we finally met with an oncologist for the first time at West Clinic in Memphis, TN. It was a very sobering experience, seeing all these people in the waiting room with no hair, very sick and frail. To quote my dad, "This is a group I don't want to be a part of." The Oncologist sounded very hopeful about my dad's type of pancreatic cancer- Adjuvant (post surgery) with chemoradiotherapy for the next 5 to 6 months, that he can be cured of whatever cancer he has left. This was our second opinion, but we were very glad to hear that the chemo drug gemcitabine used in Adjuvant Therapy has very mild symptoms. On October 20th, we will be heading to Nashville, to meet with a pancreatic oncologist at the Sarah Cannon Cancer Center. We're very excited to hear what they have to say, as they are the best in the state.
This whole experience is very surreal, and it's easier somedays than others. But this is life, life doesn't care about your plans.. it kind of just happens. I see cancer as both a blessing and a curse. Some people die instantly from a heart attack or a car crash and don't get the time to tell the people they care about how much they love them and vice versa.. Despite everything, I think this happened for a reason and I am so grateful that I get to know my father more and more each day and have an even stronger relationship than I thought I ever could.
Phewf, well that's enough for the first entry. I will try to keep this updated as much as possible.
Thanks so much for reading and caring, and for all of you keeping my dad and myself in their prayers, we appreciate it more than you all know.
Peace and Love to All!
XO, Katie
Around July 4th, my dad began having some stomach pain. He was out vacationing, so he tried to pull through that holiday weekend. After a couple of weeks, he became jaundice, (when your skin and the whites of your eyes become yellow) so he knew something was very wrong. He went to the doctor who recommended him to a GI, where my dad had a test done that showed his bile duct was surrounded by a mass that closed it up. The GI did a procedure where they put a temporary stent in so that his bile duct could drain. Because of the location of the mass, the GI suggested it was probably cancer, but wasn't sure if it was bile duct or pancreatic. Thereafter, my dad saw a surgeon who recommended the Whipple Procedure to remove the mass.
My dad went in to Methodist Hospital on August 9th to get the Whipple procedure done. During the 6 hour surgery, they found a pea-sized tumor wrapped around his bile duct. They removed the tumor, and a nodule in his pancreas. After the pathology test results came back from the tumor, they concluded that it was pancreatic cancer. 9 days after he had his inital procedure, there was a complication where his small intenstines disconnected from his pancreas. They had to go back in for a second surgery and literally glued them back together (can you imagine what kind of glue they would use for that?! hopefully not elmer's or krazy..) which really set him back a lot. He had already been up and walking and eating before his second surgery, and then he was back at square one. This is when I decided to put my life on hold and move here to take care of him through his recovery.
It proved far more difficult the second time for my dad to recover. The Whipple Procedure is the second most aggressive surgery to go through, other than Liver, so it really took a lot of of him. He was very weak for a long time.. he couldn't walk for 2 weeks and was on a liquid diet for over a week and a half. It was a very long and trying time. All the while, he kept the best attitude that he was going to beat this thing. There was such a great outpour of people coming to visit, calling, sending letters and cards. There were even folks who brought meals over for a month! Without all the love and support from everyone around, I don't know what we would have done. After what seemed like a lifetime, (total 32 days in the hospital) my dad finally was able to come home!
Even though I was so incredibly happy for my dad to come home, I was also extremely nervous and anxious- in the hospital, he had a team of nurses, nurse aides, and doctors treating him and caring for him round the clock. I had never done anything like this before, so I had no idea what to expect. The good far outweighed the bad, my dad was able to wear comfy pjs (no more nightgowns!) was able to walk and sit outside, and be around his family and friends. Since the surgeon had to go in a second time, they weren't able to sew him back up, so they kept his wound open to heal from the inside out. Since the wound was so wide and deep, my dad had the Wound Vac put in to help speed up the healing time and lessen the risk of infection. He gets that changed by a home nurse who comes three times a week. My dad has a love/hate relationship with the wound vac, it has really sped up the wound recovery time, but it is a heavy device that weighs him down when he's walking and is keeping him from going out places (other than to doctor's appointments.) Hopefully, he only has a couple more weeks with it.
Fast forward to now, October 6th, I am happy to say my dad is doing very well, and is becoming more and more independent every day. It is a very long process, and he still has a lot of recovering to do, but we're all very hopeful that he's progressing.
This past Monday, Oct 4th, we finally met with an oncologist for the first time at West Clinic in Memphis, TN. It was a very sobering experience, seeing all these people in the waiting room with no hair, very sick and frail. To quote my dad, "This is a group I don't want to be a part of." The Oncologist sounded very hopeful about my dad's type of pancreatic cancer- Adjuvant (post surgery) with chemoradiotherapy for the next 5 to 6 months, that he can be cured of whatever cancer he has left. This was our second opinion, but we were very glad to hear that the chemo drug gemcitabine used in Adjuvant Therapy has very mild symptoms. On October 20th, we will be heading to Nashville, to meet with a pancreatic oncologist at the Sarah Cannon Cancer Center. We're very excited to hear what they have to say, as they are the best in the state.
This whole experience is very surreal, and it's easier somedays than others. But this is life, life doesn't care about your plans.. it kind of just happens. I see cancer as both a blessing and a curse. Some people die instantly from a heart attack or a car crash and don't get the time to tell the people they care about how much they love them and vice versa.. Despite everything, I think this happened for a reason and I am so grateful that I get to know my father more and more each day and have an even stronger relationship than I thought I ever could.
Phewf, well that's enough for the first entry. I will try to keep this updated as much as possible.
Thanks so much for reading and caring, and for all of you keeping my dad and myself in their prayers, we appreciate it more than you all know.
Peace and Love to All!
XO, Katie
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