Here is How You Can Help

This past year people have asked again and again how they can help. If they can do anything. If we need anything. Thankfully, luckily, we had things more or less under control. I am very thankful that my family has such a strong support system surrounding us, propping us up.

But there is something ya'll can do. You guys can join me in raising some funds to help end this horrible, hopeless cancer. Pancreatic cancer is one of the most deadly cancers out there yet one of the least researched or fundraised. As we found out first hand, they don't know very much. Here is what they do know:

• An estimated 46,420 Americans will be diagnosed with pancreatic cancer in the U.S., and over 39,590 will die from the disease.
• Pancreatic cancer is one of the few cancers for which survival has not improved substantially over nearly 40 years.
• Pancreatic cancer is the 4th leading cause of cancer-related death in the United States.
• Pancreatic cancer has the highest mortality rate of all major cancers. 94% of pancreatic cancer patients will die within five years of diagnosis – only 6% will survive more than five years. 74% of patients die within the first year of diagnosis.
• The average life expectancy after diagnosis with metastatic disease is just three to six months.
• Pancreatic cancer may cause only vague symptoms that could indicate many different conditions within the abdomen or gastrointestinal tract. Symptoms include pain (usually abdominal or back pain), weight loss, jaundice (yellowing of the skin and eyes), loss of appetite, nausea, changes in stool, and diabetes.
• Treatment options for pancreatic cancer are limited. Surgical removal of the tumor is possible in less than 20% of patients diagnosed with pancreatic cancer. Chemotherapy or chemotherapy together with radiation is typically offered to patients whose tumors cannot be removed surgically.
• Pancreatic cancer is a leading cause of cancer death largely because there are no detection tools to diagnose the disease in its early stages when surgical removal of the tumor is still possible.
• The National Cancer Institute (NCI) spent an estimated $105.3 million on pancreatic cancer research in 2012. This represented a mere 1.8% of the NCI’s approximate $5.8 billion cancer research budget for that year.

Source for statistics: American Cancer Society: Cancer Facts & Figures 2014 and NCI Annual Plan & Budget Proposal For Fiscal Year 2012.

So I'm going to do what little I can to help to raise some funds. I had to sit this last year on the bench, watching my Dad wither away, completely helpless. There was nothing I, or anyone, could do. My family is participating in the PurpleStride 5k Run and Walk organized by the Pancreatic Action Network. This is how I'm getting into the game. This is something I can do. We can all do.

The event is Saturday, September 27. I would really like to see as many people as possible come out and join us. You don't have to be a superstar athlete. You don't even have to be an athlete. It's 3.1 miles long. Run it, walk it. Have someone push you in a wheelbarrow. Push a stroller. Have someone push you in a stroller. Cheer for us on the sidelines. However you choose to participate will be greatly appreciated.

We are doing this in the memory of my Dad and have a team that I'm pretty sure he would be proud of. Even though the man himself would have never, ever participated in something like this. This would be one of those time were he would send my mom, sister and I off while he stayed home and grilled a big, celebratory dinner. That was his style. We have formed Team Cigars and Tiki Bars after two of his favorite ways to kick back and relax. I'm hoping that we really make a presence at this walk and have set a pretty lofty goal of $5000 to raise as a team.

If you would like to join us, and I really hope you will consider it, you can register for the 5k for our team by clicking the join us button on this page:

http://purplestride.kintera.org/iowa/cigarsandtikibars

If running or walking isn't your scene or can't make it out for the day, you can make a donation to help the team reach our fundraising goal by clicking the same link. Either way, your support will be very much appreciated. 

Hope to see you guys out there in September!

For more information about the Pancreatic Cancer Action and their mission to advance research, support patients, and create hope you can check out their website at 
www.pancan.org 

One more candle and a trip around the sun

 It's  hard to believe that this picture was taken exactly a year ago. 365 days. 

It was your 60th birthday and we had a little party for you. Nothing big, just mom, Jenny, Brian, Hailey, and I. Hailey and I decorated the house for you and surprised you after work. We ate dinner, had some cake.  You weren't feeling the best and weren't very hungry but we had no idea that cancer was already taking its toll on your body. We had no idea.

It was right after your birthday that you went in for some tests. And then some more tests. And then we got a phone call. And you went back for another test. And then another phone call. And some devastating news. I remember every day of this past year exactly. I remember standing there in the kitchen when the doctor called mom. Watching her face for any sign of good news. Hoping, wishing, praying that it wasn't what we all thought it was, knew it was.

This last year, starting and ending with your birthday has been a time-warp. On one hand I can't believe it's been a whole year. It went by so, so fast. It was if you were here and gone with a blink of an eye. I guess when your time is limited, every second, every minute, every day goes by a little faster than you want. So many times I just wanted to pause time and hang there for a minute. On the other hand, I can't believe its only been a year. It's only been six months since the funeral. It feels like it's already been an eternity. Only one year ago you were my perfectly healthy (so we all thought), happy, normal dad, walking around, going to work. It feels like decades have passed since that guy was around.

This last year hasn't been easy but we have made it so far. Writing this today is no easier than the first couple of posts. I miss you just as much today as I do then. It sounds cliche, but there really isn't an hour at goes by that you don't cross my mind. Everything reminds me of you somehow. Thankfully, most of the time it just brings a smile to my face but Sometimes, in the most random of times, it will hit me and I'll miss you more than ever. I totaled my car a couple of weeks ago. It was the first time in a long time I just wanted you there. I wanted to call you and just have you take care of everything like you always did. I wanted you to yell at me for not getting my brakes fixed when they started to make noise. I just wanted you to tell me that it was going to be okay.

Your absence is felt everywhere. I hear that from a lot of people. Things are just not the same with out you here. I went to the gun show and saw some of your guys. I've ran into some guys from the Sheriffs office. They said the same thing. They just miss you. Everybody does. It is just a testament to how many people here loved, valued, and enjoyed your presence in their lives. 

I'll be missing you a lot today and reflecting on this last trip around the sun that I've made.
Happy birthday Papa. 

Miss you lots, love you more.

Reflections

New Year's Day.

I can't believe that another year has passed. Just like everybody does this time of year, I have been looking back. Replaying the year. Sizing it up. Was it a good year? Was it a bad year?

It was the best year.
It was the worst year.

It was by far one of the most important years of my life. I'm sure that at the end of my days I'll still say that 2013 was one hell of a year.

It was the year I got a promotion. A rather significant one to me. One I worked hard for. One that I didn't get in 2012 and one of my coworkers did. It was the first time Adult Kim worked hard for something and obtained it. It felt amazing.

It was the year I moved in with Ryan.

It was the year we took our first vacation together.

It was the year I learned how to play golf. Kind of.

It was the year I went to my first car race. And I liked it. I became a fan.

It was the year I found out my Dad had cancer.

It was the year my family was tried and tested.

It was the year I saw pain and suffering.

It was the year I watched my Dad and my Mom fight for more time together.

It was the year I learned to be positive no matter what I was facing.

It was the year I watched my Dad die.

It was the year I learned how to appreciate the small things.

It was the year I saw my family fall to pieces and then pick up those pieces.

It was the year friendships were stregthened. Cemented almost.

It was the year I learned to truly appreciate the people and things around me.

It was the year I finally grew up a little bit. Realized that it wasn't about me. Or what I wanted. Or that life has its own plans. I learned a little bit about sacrifice. I feel I little older. A little wiser.

It was the year of extreme loss. Loss that has forever changed me.

It was the year of good times. Good concerts. Good trips. Good drinks. Good nights drinking on the patio. Good days spent on the river. Good laughs. Good memories.

So this new year is a little bittersweet. It's the same feeling I have when I visit an old friend. I know I have to leave. Move on. Return to normal life. But I never want to. I want to stick around a little longer. Stay just a little bit. But staying too long would wear out the welcome.

I am excited for this new year. To see what it brings and what adventure are in store for me and the fam. It will be a big year too. A year of healing. A year of not letting the little moments pass. Of living in the moment. Of saying why not instead of why. Of letting those around me know how much they are appreciated.

I wish you a Happy New Year full of enough of whatever you need. And thank you for coming on this journey with me.

The Waiting Game

We wait.  

We've spent this last week waiting in a holding pattern. We spend our evenings together at the Hospice House. We eat dinner together. We laugh. We get teary eyed. We tell stories. We share memories. We say, "hey, remember that one time..." We make small talk with visitors. But mostly we wait. 

We go to work. We come back. We try to keep up with life outside of the Hospice House. Its easy to forget that the world outside is still spinning, still moving on while we sit here waiting. The dishes in the sink are piling up. The laundry stays undone. We've got more important things to worry about. Those things can wait. 

We are waiting for this to be over. For him to pass away.  For him to not be in pain any more. To start mourning. To start healing. 

That may sound harsh.

But when you see someone you love in this state,  you don't want to wait anymore. He's in pain. He can't communicate. He spends his day sleeping. Every once in awhile, when he hears our voices, or we kiss his forehead, or we touch his arm, he'll open up his eyes. We try to guess what he needs, what would make him more comfortable. The nurses give him meds to ease his pain and nausea. 

He falls back asleep. And we wait. 

How are YOU doing? I've answered this question a thousand times since May. The short answer? I am doing okay. We are doing okay. 

So how am I really doing? That changes day by day, hour by hour. Minute by minute. 

I feel angry and bitter. When I see old people complaining about being old. When they are crabby. When they complain about the smallest, most trivial of ailments. I want to grab their shoulders and scream in their face how lucky they are to be alive. How lucky they are to get another day. Another hour. That anger turns to bitter. Why do you get to walk this earth if all you are going to do is complain about it. Why you and not my dad? He would have been so much better of an old person. So much cooler than you. Why do you get to stay and he has to go?

I feel regret. Those Sunday dinners I missed because I had better things to do. That one time in college I told him I hated him. Every lie I told. Every time I yelled at him. Every time I slipped $5 out of his wallet. Every time I was too cool or had too important of things to do than to spend time with him. Every time I didn't want to go fishing. Every time I didn't want to be seen in that beat up truck. All those times I was a terrible daughter. 

I feel heart broken. I think about all the things he isn't going to see or do. My wedding. My kids. Hailey's graduation. Hawaii. My 30th birthday. All the birthdays. All the holidays. So much life yet to see and experience that he won't be there for. 

I feel tired. Worn down. Beat. It's exhausting to be brave, be strong all day long. To put on your best helpful smile and wear it all day long. 

I feel lucky. I knew in May that we would eventually be at this point. He was not going beat this cancer. The outcome was as bleak as they get. I could not imagine what this would feel like if we had received a different outcome. If there had been hope. My heart breaks for the people who thought their loved ones had a chance to beat this disease and still ended up doing what I'm doing right now, sitting in a hospice facility, looking over a loved one. We have had time to prepare. We are getting a chance to say goodbye. We a treasuring the last moments together. We get to have hospice care. They are truly an amazing service, such kind and caring people. There are going to be hundreds of people tonight who loose their fathers unexpectedly. There are going to be hundreds of people who don't get to say goodbye to their loved ones. I do.  For that I feel lucky. 

I feel grateful. Maybe that's just another way of feeling lucky, but I am grateful that I have a amazing support system. My family is stronger than ever and in the face of this heartbreak, the ties that bind us together are stronger than ever.  I couldn't have asked for a better boyfriend. Or better friends. Or better co-workers. I haven't been the easiest person to be around. I know this. But they have been steadfast. Thank you for listening. For being there. For taking me out and putting a beer in my hand. For a good fart joke to make me laugh. For letting me fall asleep 30 minutes into your favorite movie because I am so tired. For the offers to help out with whatever you could help with. For being there. Thank you. 

I feel loved. Since this began, we have seen an outpouring of thoughts and prayers and love from so many people. My father touched a lot of people's lives and we are hearing from so many people. Thank you for that. 

So, how am I doing? I'm doing okay. We will be okay. Maybe not today, maybe not tomorrow.  But eventually, we will be okay. 

A Roll of the Dice

I’m amazed at how much science can tell us, and yet, in this time of modern marvels, how little they know. That’s the first thing that cancer taught me.

This is what treatment we think will work, but we are not sure if it will work with you or if your cancer will respond. We are seeing good results in trails with this, but we don’t know if it’s going to work for you. Side effects? They say these side effects are possible and you could experience all of them, some of them, none of them, or a completely different set of side effects. Survival? Life expectancy? Everyone is different and every cancer acts differently. We know but we don’t really know. Nothing but a grey area. A roll of the dice. 

 One thing that they were sure of was that my father had a large tumor on his pancreas and a few small tumors on his liver. The official diagnosis was Stage IV Pancreatic cancer.  Another thing they were sure of? The outcome was bleak. People don’t beat pancreatic cancer. All they can do is to prolong life for as long as possible. Even that outcome was pretty grim. Only a very small percent of people are a live 5 years after diagnosis. As in, less than 5% of people. It’s the nature of the type of cancer that he has. It’s quick, it’s deadly and there isn’t much they can do.

My parents met with the Oncologist at the Iowa Cancer Center. My dad was hopeful about treatment. He wasn’t ready to say goodbye yet and neither were we. They determined that a strong and aggressive chemotherapy regimen would give us the most time. There was an experimental therapy that was just getting FDA approval that had promising results. Not curative results, but it will give us some more time.

In the middle of May, he had a port put in and started his grueling therapy schedule of 48 hours of a chemotherapy cocktail every two weeks. He would start on Wednesday after noon and be hooked up to the IV until Friday afternoon.

My family spent our summer living in two week cycles. The weekend after the treatment was always a little rough with side effects. So plans were always made for the week following. In the beginning, we had some good weeks. There was even one week were I was even able to forget that he was sick for a day or two. Every once in a while, he would have a little bit of his energy back, he would eat a good meal or two, and he would have his sense of humor back. We hoped for more of those.

Unfortunately, good days and weeks were few and far between and the further down treatment road we traveled, the fewer good days we saw. His appetite failed. Cancer changes how your taste buds work and nothing sounded good and everything tasted terrible. A few times, we could get him to eat some his favorite foods like fried chicken. I can’t help but to laugh at the irony of the situation. Before he was diagnosed, my sister and I pleaded with him to cut back on fried chicken. He had high cholesterol and a family history of heart problems. The fried chicken was going to kill him after all! Flash forward to a couple months later and there we were buying fried chicken weekly in hopes that we could get him to eat it. He was in a lot of pain. The chemo made him nauseous.  He was weak. Small things took more energy than he had most of the time.

Sometime in August (maybe, time has kind of run together at this point) he went in for a scan to see how well/if the chemo was working. It was, a little bit. A teeny, tiny bit. The tumors were slightly smaller on the liver but there had been no change of the one on the pancreas.  The team of doctors decided to add a round of radiation therapy to his treatment plan. They wanted to try to shrink the tumor on the pancreas to ease his pain. They scheduled him to do 21 treatments, one every day while taking the weekends off.

It didn’t take long for things to go south after the radiation treatment started. It was brutal for him. Good days became non-existent. No energy, no appetite, constant pain, miserable. Just as he was finishing radiation, my parents came to an understanding that treatment was just too much. There wasn’t enough progress to justify the toll it was taking on his body. After talking to his doctors, they determined that they were going to stop any treatments and start Hospice care.

That brings us to today.

Little after six months after this journey began, we transported my dad from home to the Hospice House in Johnston.

My heart is heavy knowing that he’ll never walk through those doors again. I’ll never hear his laugh from down the hall. We’ll never eat dinner at the kitchen table together again. That house won't ever quite be the same. Something will always be missing.

Whammy.

Now, this is a story all about how my life got flipped-turned upside down. And I'd like to take a minute, just sit right there...

Only in this story, I didn't become the Fresh Prince of Bel Aire.

It started with what we thought was the just the flu. Dad just wasn't feeling his best. He had an upset stomach, aches and pains, a blah feeling that he just couldn't shake. It would come and go, each time getting a little worse. Eventually, he went to the doctor. Diagnosis: Sinus infection. No big deal. He had his fair share of those in his life. When that didn't get better and more symptoms popped up, he went back to the doctor. This time he added pain in the side and a loss of appetite to the symptoms he was feeling. The Doctor was sure it was a gallbladder problem.  They did some blood tests and that level came back elevated. All he needed was to remove the gallbladder and he would be as good as new. Man, IF ONLY that would have been true. They needed to set up an ultrasound to see how bad the gallbladder had gotten before they could take it out. 

It was a text message. Just one text message and my life would never be the same. It came from my mom the day that they were doing the ultrasound.

It just said call me when you get off work. That's never a good thing in a family that communicates through text messages 90% of the time. Talking on the phone means something serious. Something bad. And call her when I'm not at work? That definitely meant something bad was waiting for me on the other end of the telephone. I couldn't wait until I got off work. I called her right away. Her voice was strained, tired, deflated. She got right to the point. Gallbladder is fine but they saw spots on the liver. They need to do a biopsy to figure out what they are and where they came from. They think it might be cancer. But Liver Cancer is rare. That means it started somewhere else and has moved over there. But they still don't know. Nothing certain. Tests. More tests.

I did what anyone member of the 21st century did. I fired up the Google machine and read the top results. Cancer. Cancer. Leasions. Leasions arent bad! I went with that one. Convinced myself that everything was going to be okay. They werent tumors, they were just leasions. Leasions could be anything. Hell, most of them are beign. They dont even opperate on them.

My mom knew better. Thirty years as a nurse took away her optimisim. In the back of my mind, I knew too. I just couldn't admit it. Cancer doesn't happen to my family. It just happens to other people. In movies. In newspaper articles. On sad posts on Facebook. Not my family.

Even when they were doing the biopsy, I was convinced that the doctor was going to say that it was nothing. We got my Dad home and comfortable from having a huge needle in his liver. The doctor called quicker than we expected. I couldn't help but feel like I was in the game Press Your Luck. The entire time my mom was talking to the doctor I kept thinking, "no whammys, no whammys, no whammys." I was wrong.

It was cancer. Pancreatic Cancer.

Whammy.