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.