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-cancerhttp://en.wikipedia.org/wiki/Pancreatic_cancer
