Peace and Joy

There are a lot of things I want to write about- a lot of things I'm learning. Most importantly, though, today I am going to decide not to let cancer define our Christmas. I am going to continually remind myself and my family that this is the birthday of our savior, Jesus Christ, who died so that we can join his father in heaven when he decides it's our day. When that day comes, we will turn that day over to him. We will hate cancer for bringing the day. But cancer doesn't get this day. Cancer cannot have this joy. I know the bible says God can give us a peace that surpasses all understanding, and that's what we need this Christmas. Peace and joy.

Dear Daddy,

You're entitled to feel whatever it is you're feeling today. You can feel any way you want for the rest of your life, and I won't even try to stop you. But I'm going to believe that God still has joy in store for you, for mom, for all of us. I'm not going to roll over and let cancer take the joy out of Christmas- this year or ANY year. Nothing can change the memories of the last 32 wonderful Christmases with you, and I'm not going to let anything darken the memories of this one. Try it with me, Daddy. I love you.

So They Say

I really don't feel like writing tonight, but I looked at Daddy's Facebook page and thought that so many of you would want an update from Indianapolis. It was a downright crappy day for him. He got there at 8:30 in the morning for a 1:30 appointment. He did not see the doctor until 4:30. He had a CAT scan, blood draws, etc. They found the source of his cancer. It started in the bile duct (of the liver). This is a shocker. Apparently it's a very rare (and aggressive) form- although we don't know if it will be anymore aggressive than if it had started in the pancreas. There are two protocols for treatment. We really have no idea how they will work- if they will work. There is a 30% chance that they will temporarily stop the growth. There is no plan for surgery. Daddy will start chemo the week after Christmas. As of now, we believe he will have it once a week for three weeks and then one week off. He will be treated in Terre Haute and seen in Indy.

I just want to share one thing tonight. Please, if you want to take something from this journey- take this. Don't wait. Don't wait to fix relationships, to tell people you love them, to visit the places you want to, to find the things that give your life meaning. I know- we all see sad stories on the news or in the lives of the people around us. We think that we'll learn from them, then life gets in the way and we move on without changing. I can honestly tell you that I have no regrets about my life with Daddy. None. So please don't let this be another cliche moment. Please appreciate the time you have.

And just one more thing (because I know Daddy would say this too)- get out of debt. That may seem silly, stupid or minute compared to the larger issue here, but you haven't seen what we've seen. Walking through the journey to debt freedom together bonded my Daddy and me more than just about anything. We shared our struggles and our triumphs. And now, when the world rips apart, he has a measure of freedom. He knows that he has served my mother well, that she will not have to worry about her finances. I know he will tell you that we all know that God led him on the journey to debt freedom not just to make his earthly life easier, but so that his transition to eternal life could be even more joyful. So it's not minute, people. It's real. Daddy and Mom are free and we hope you will be too.

Dear Daddy,
This is like torture for a control freak, isn't it? In one of the last emails you wrote to me, you said that you and I were always at the center of every storm and we wouldn't have it any other way. Of course you were right. But we put ourselves at the center because we want to help steer the ship.  We like to have some form of control, a sense that we help determine our own future. Now we're dumped in the middle of this storm, and I feel like I'm trying to steer and I can't get a grip on the wheel. I know, though, that we still have some control. YOU have some control. You can't decide the outcome, but you can decide everything in between. I'll be your hands and feet when you're too tired. I'll stand in the storm when you can't. You just tell me what the plan is and I'll make it happen. You can trust me. I love you.

Get Up

I'm having trouble getting up. It's pathetic, really, considering I'm not the one with cancer. Nevertheless, when morning comes, I feel sad, pathetic, pissed off and I want to stay in bed. I can't, of course, because I have three babies who need me. The fact that I can't kick the constant burning "on the verge of bawling" feeling in my throat is really starting to irritate me. It's been getting better in the afternoon and evening, but for some reason the mornings are the worst. I think it's because cancer is not the most pleasant thought with which to start one's day.

I think maybe, though, something is starting to grow. The bible talks about having faith 'as small as a mustard seed.' I remember the first few years of my marriage when we were just broke and miserable. I didn't really know God all that well, wasn't really happy with Him and didn't think I deserved forgiveness anyway. I had just a teeny tiny bit of faith left, so I used it to pray these short, unemotional prayers. "Help me pay the bill, Lord." "Please help us stay married, Lord." Eventually he answered those prayers one by one, and he built for me the most incredible life. I'm having trouble right now figuring out why He would then confront me with one of my deepest and most personal fears. I just can't believe that there's not a more merciful way to "teach me" whatever it is that he wants me to learn. So now it's like I'm all the way back to square one, or maybe square zero. People talked about how I would probably get "mad at God," and I didn't think I would. I'm still not sure I'm mad. I think I'm scared. I'm scared of God. If he would do this to my heart when I'm just finally learning to talk to him, trust him, then what will he do if I rebuild? Will he do something else to me then because he thinks I can handle it? It probably sounds irrational, I know. It's ridiculous to think that if I lay low and be obedient that he'll just forget I'm here and leave me alone. So anway, that's why I'm back at square zero. My big ol' mustard plant (or whatever mustard seeds grow) has been ripped out of the ground. I think one little seed fell off, though, and it's been raining a lot, so maybe it will grow roots again.

I love knowing that so many of you are praying in different ways. Some of you are praying for big miracles. Some of you are praying for God's will. Some of you are praying for mercy. Some of you are just praying that we don't lose our minds. There is no way for me to put into words how that touches my heart. I think maybe one of you is praying that I'll get pissed off at cancer. I can feel it. I'm going to ask Daddy if I can be his chemo buddy. I have a friend who has been in chemo and radiation for years and years. For the last year or so that I've known her, I've asked her to tell me what it's like. I've marveled at how she can function like a normal person when she knows that she's just buying herself a little time in this life. I think God put her in front of me so that I could start getting used to the idea. I really do. So now I'm going to have to comfortable with chemo because I'm going to do whatever Daddy's going to do.

Dear Daddy,
You really got screwed, you know? Nobody could ever believe how you came back from your bypass and stints. You are incredible! You are so strong and handsome! You do all that work and then this *shit* happens. Sorry, but it is total *shit.*  Because I know you would want me to, I'm reminding myself that God doesn't cause *shit* to happen. It's just one of the great mysteries of life, right? So I guess you and I will just be watching a lot of Lifetime movies after chemo days so we can see all of the other people that have gotten screwed by shitty things. I know one thing for sure. There's nobody on this planet who I'd rather feel shitty with. John's a close second, of course, but he said you can take this one.

Reality Bites

There's no way to make the facts eloquent or poetic, so here they are. Daddy has Stage 4 liver cancer. It's an automatic stage 4 because it has spread from somewhere else in the body. Probably the pancreas- possibly the colon, but unlikely. So they have had to send it back for more pathology evaluation and until then it's called "unknown primary," meaning they don't know where it started. They may never know. Isn't that strange? It can be so incredibly tiny that the most powerful microscopes in the world may not be able to find it, yet it can literally suck the life right out of you. Why would God make something like that? I don't get it.

In any case, it's the type of cancer for which they don't give you a cure rate. They say things like, "we don't have a very good track record," or "we've seen people go for two years." Tomorrow Daddy will go to the IU med center in Indianapolis for a second opinion. On January 5th he will get the detailed pathology reports and start chemotherapy. The doctor said that if they can track down the origin, find the right combination of experimental drugs, have success with the drugs, shrink the lesions on the liver- then they could do a liver resection. If you are a person who likes to pray specifically, that would be something to pray for.

I'm still having trouble praying. You know when you're talking to your husband and he's close enough to "hear" you, but you know he's not "listening?" That's how I feel about God right now. Sometimes, at night, I'll lay there and try to eek something out and it feels like the ceiling is blocking the reception- inhibiting the signal to heaven. I know- it's a reception problem on my end, not God's. I hope it gets better.

Dear Daddy,
You didn't have a Daddy who listened to you or treated you with love until you met your heavenly father. Today Joe and I talked about what an incredible job you did teaching yourself to be an amazing father. John said something that I wish I had come up with myself. He said, "Your dad took an acorn and turned it into a giant oak tree." That's true, Daddy. You're the trunk of this now strong and beautiful tree, and that will never change. I always knew you would listen to me; and the fact that I was able to trust, confide in and rely on my earthly father is what taught me that I could also trust, confide in and rely on my Heavenly father. I'm having some trouble with that right now, but you and I have had trouble before and we got through it and came back stronger. I hope my "other" Daddy and I will do that too. I think we will. I love you as big as the whole sky.

Out of Order

We're on our way to a "family meeting" with the oncologist. I feel like I'm on my way to prison, or my own funeral or some other equally dreadful event. Yesterday, mercifully, I felt normal for a while. I don't know if it's because other people are praying for me or because I had emotionally dried up, or both. In any case, here we are. You would think that after being told on three separate occasions that Daddy has cancer and that there is no cure rate I would be used to hearing it, but every time is like the first time. Or worse, maybe. It's like they're rubbing it in, turning the knife. "Just in case you forgot, he DOES have cancer. We just wanted to make sure you understand that the next, ohhhhh, year or two are going to be pretty much horrendous."

You know, I think maybe I'm psychic. I've been thinking about how hard I've prayed over the last year or two. Part of the reason I did it was because things have been so damn wonderful. Perfect, really. I have an amazing husband, healthy children, a job I love, a home, a family. I was always afraid that I was pushing my luck because I didn't deserve all of that. When Daddy was medicated and getting his port put in, the nurse said he asked if she had any medicine that would take him back to the '80s. I thought that was funny. I wondered if he wanted to go back because he enjoyed the '80s, or just because he wanted a 'do over.' If I could get ahold of that medicine, I would just want to go back about two years. I could just live the last two years over and over and over. Leaving out the last week, of course.

Last month I was taking Kate home from school and she said, "Mom, Grandma Bernie's going to die first, right?" Grandma Bernie (John's Grandma) is 95. "Yes," I said. "Then Grandma (John's Mom is 76), then Papa a long time after that and then Nene, right?" I said something like, "More than likely, yes." And I believed it when I said it. In her little mind, that's the order of life. She GETS that. It makes SENSE. She trusts God to keep things in order. She has prepared herself for the order of life. Apparently I had too, because I totally misled her. She knows Daddy's sick. I've told her that she might see me crying because I'm sad, but that I'm okay. Every day when I get home she comes running up to me and says, "MOMMY! Is Papa better yet? I prayed three times today!" How do I answer that??? How am I going to explain to her that there is NO order to life? How will I tell her that God doesn't always answer prayer? How will I continue to build her faith when I've all but lost my own?

Dear Daddy,
You know how we both like things in order? I can't stop cleaning since Thursday. It must be some weird control thing. It reminds me of the cleaning parties you and I used to have. Most people would think it's strange, but I used to LOVE waking up on Saturday mornings when you had the Beach Boys playing so loud the neighbors could hear it and you'd be cleaning the house. I loved to get up and help you. Then, after a few songs, a slow one would come on and we would dance together. I loved the feeling of order. Everything was as it should be. Now it's not. I don't know how to deal with it. I feel so inadequate. Would you really go back to the '80s?

Being right. . and wrong.

My brother and I had a talk the other day on the way home from the airport. I told him how I've prayed every night for years- thanking God for the health of my family and beg him to keep us that way. I told him that I prayed that because I always had this deep fear that something terrible was going to happen to one of us. I couldn't listen to certain songs or watch certain things because those fears would creep in and cause so much anxiety that I almost couldn't breathe. I suppose I thought that if I prayed often enough and long enough that God would answer that prayer. So I guess I was right. . and wrong.

This morning when I woke up, the record started in my head again. Do you remember how records would skip and say the same thing over and over? The minute I came to conciousness, the record started, "He has cancer, he's going to die, he has cancer, he's going to die, he has cancer, he's going to die, he has cancer, he's going to die." All I can do is start a different record that skips, "stop it, stop it, stop it, stop it, stop it, stop it" until something distracts me. When I was young, about 12 I think, I heard this poem. It made me sad, but I couldn't stop reading it. I memorized it and have never forgotten it.

Invictus (Unconquerable)

Out of the night that covers me
Black as the pit from pole to pole
I thank whatever Gods may be
for my unconquerable soul.

In the fell clutch of circumstance
I have not winced, nor cried aloud
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade
And yet the menace of the years
Finds, and shall find me
Unafraid

It matters not how strait the gate
How charged with punishments the scroll
I am the master of my fate
I am the captain of my soul.

Dear Daddy,
It matters not how narrow the gates to heaven may be. Your soul is saved, you are unconquerable. I am 'invictus' because of you; and your grace, courage and love will live in my heart forever. Be unafraid, Daddy.

Would You Rather. .

Today was a game. A few games, actually. My Daddy always plays this game with Kate. He'll say, "Would you rather. ." and then give her a choice like, "be a unicorn or a fairy." They'll go back and forth for half an hour debating the benefits of four legs, invisibility, walking on rainbows, wherever their imagination takes them. There's another version, too. It's a European game show where they give them choices like, "have perpetual gas or eat dog food for a year." This morning we went to breakfast and I found myself looking around me and playing "Would You Rather" in my head. "Would you rather have a child with down's syndrome like the people at table 5 or lose your Daddy to cancer?" I'll take down's. "Would you rather be morbidly obese for the rest of your life like that woman at table 11 or lose your Daddy to cancer?" I'll take the fat. "Would you rather be in a wheel chair for the rest of your life like that guy in the next room, or lose your Daddy to cancer?" Wheel chair, please. I wouldn't call it bargaining, per se. I know God's not in the business of cutting deals. I guess it's just a way of gauging my pain, or my dedication or love or something. I suppose I'm also trying to convince myself that there are things that could be worse. Like anything involving my children.

Tonight my mom's family from Chicago and Daddy's sister from North Carolina came down. When we couldn't stand the painful hugs anymore my aunt broke out Mad Gab. I remember peeing my pants one time playing that with some girls. My mom's family doesn't get together often, but usually when we do we play games and someone will do something stupid that we'll talk about for years. Tonight it was me. I laughed. We all laughed. For quick moments it felt normal. Those thoughts- the thoughts about reality would creep in and I would shove them back. I started to feel like maybe if I could just pretend that everything was normal, that if I just acted like I didn't know what was really happening maybe I could get away from the pain. On the way home I didn't play "Would you rather" anymore. I didn't think about seeing my little brother sob, or how baggy my Daddy's pants were, or how I wanted to throw up when I looked at the pictures of my parent's 25th anniversary party with the words "Only The Beginning" around them, or how my Grandma drove down for the first time in more than 15 years because even she needed to hug someone. I just thought about the stars in the sky, my babies asleep in the back seat, the Christmas lights on the houses in the country, the new tires on the car. I made myself think about anything except my "new normal." I felt guilty for doing it, but at least I didn't cry for two hours straight.

When I got home I had some emails and cards. It was like another sort of game- a guessing game. Will this one make me feel loved, or will it just make me sad? Should I write back and tell them I'll be fine, or should I tell them the truth? I do love the emails and cards, though. To think that people would take the time to think about my pain and not be too scared to tell me they were thinking about it. That's pretty incredible, really. I think about the people I know who have lost someone and I wish I could have been there for them, or I wonder if I did enough for them when I was there. I suppose we can never do enough really. There is no "enough," but I am so grateful that some people are willing to try- even though they know it will never be enough.

Dear Daddy,
You know that thing from high school that we both still feel guilty about? You've done enough. We've talked about it enough. You've told me enough. Don't take that one with you to Heaven, just take care of it when you get there. The love you've given me has always be enough for me, and there's nothing I'd "rather" have to hold in my heart.

Big Rocks

It's like there are huge rocks in my stomach. They make me feel heavy and my stomach hurts. I can't decide which I hate more- day, or night. All day I'm sad. Everything I do makes me sad. One minute I desperately need people around me and the next minute I'm disgusted and I want to be alone. I think about how I will live the next months with everything being "the last time." ME!! One of the most emotional, sentimental and controlling people I've ever met. People keep saying, "You'll get through it. God will give you the strength." WHY WOULD HE??? I DON'T WANT THE STRENGTH. I WANT MY DADDY! The rocks just keep getting bigger and bigger. And my heart. . when I was trying to think of how to describe it, The Grinch came to mind. You know how his gets bigger and bigger? I feel like mine's getting smaller and smaller.

Then there's the nighttime. I drift off to sleep and a little while later, I'll inevitably wake up and for a second, just a second, I've forgotten. I feel normal. Until my brain catches up. Daddy's going to die. Then I feel like I'm drowning all over again. It happens 10, 20, 30 times a night until I just give up and stay awake. I would rather think about it all the time than be learning it for the first time over, and over and over again.

I've had some moments since I came home when I've been happy. The moments when I'm with the girls. They make me forget other things for a minute, but then that feels wrong. My Daddy can't forget. He can't escape. Some people are telling me to "take time for me," or "get away for a little bit." What about Daddy?? He can't get away. It's IN him. It IS him. Getting away from IT is getting away from Daddy, and I've never tried to get away from Daddy. He's the first one I go TO. Since the day I was born, we've felt the same. He's calls us kindred spirits. Nomatter what the situation, I would call Daddy because I KNEW he would feel just like me. He would feel what I was feeling. And now I want to feel what he's feeling. I will NOT leave him alone with those feelings. I want to know how it feels. I want to share his pain. But I'm so scared. He can't run from it, so I can't run from it, and yet I want to. I want to see him, but I'm scared to look. I want to touch him, but I'm scared to let go. I want to ask him things, but I'm scared of the answers.

It feels like the world is playing a cruel joke. I turn on the radio and hear, "It's the most wonderful time of the year," when my world is caving in. I hear, "It's a holly, jolly Christmas," and I wonder if I'll ever feel happy again. I hear, "Joy to the world," and I feel joyless. I hear "Silent Night" and I think about how much I hate trying to sleep because I'll wake up and remember my truth. Why has God done this???

My Daddy gives the best Christmas presents. He listens to what you say throughout the year- what you need- and he can't WAIT to get it for you. He's like a kid trying to keep a secret. This year, just last month, he got debt free. He's been so excited to give us the presents this year because he picked them out carefully and paid cash for them. You know all I can think? That whatever it is, I will have to keep it forever because it may be the last Christmas gift he gives me. And it's not fair!!! It's just not fair!!! How will I ever feel joy at
Christmas again? It's gone. The joy is just completely gone. Why would God make me hate Christmas? Why would he take away the joy? I know I'm selfish. Even when I  write it, I feel selfish. I know there is still good around me. I know there are people who have been through worse things. I know that none of us know when we're going to die. But I just don't care. I can't make myself care about any of that. I can't rationalize.

Dear Daddy,
Do you remember when my friend Anne Louise moved away? I was so sad. You held me in the driveway and told me it wasn't fair. I knew you understood how my heart hurt. I wish I could understand how your heart is hurting. I wish I could hold you so you would feel better. It's not fair.

CA 19-9

It's numb now, so I can write. My heart is numb. I was so sure that everything was going to be fine. I was so sure that I heard God say that. Now I wonder if I ever really heard Him at all. I wonder what I've done. I suppose I'm wondering if anything is what I thought it was. I feel like I'm swimming in the ocean and I just keep fighting the waves. I can't fight my Daddy's cancer anymore than I could fight the ocean.

My mom called me right after they left the doctor's office. That must have been horrible for her. I wish it was one of those memories that was a half-forgotten blur, but there's nothing blurry about it. I realized immediately that my best friend, sitting next to me, had already met CA 19-9. Before her Daddy died. Today, when I thought about it, I felt like God had an alterior motive. Someday I know I'll have to ask for forgiveness for the things I'm thinking. But she was such a good thing- she IS a good thing-and I know God sent her because He knew He was going to take my Daddy away. So now all I can think is that everything good and precious in my life is here because of some inevitable, unsurvivable pain I am going to face.

My Daddy is so healthy. He almost died when he was 40-years-old, but he suvived bypass after bypass, stint after stint. He worked so hard to stay here for us. We all knew that someday, though, his heart would kill him. This wasn't part of the plan. This isn't how it's supposed to be. Even as I write that I know it's so cliche. Who ever dies the way they're "supposed" to?

Daddy's always been so fun. That's what the girls love most about him. He's young, and he's young at heart. People look at pictures of him and they can't believe he's old enough to be my Daddy. How can God ask me to watch that disappear?? I know I'm riddled with sin, but how can God ask this of me? Why does He ask this of me? How do I tell my sweet babies that the world, their safe, happy world; can be so evil? How do I continue to be a mother when all I want to be is a daughter?

I want to pray. I want to laugh. I want to breathe. Right now all I can do is hate. I know it's a selfish, terrible thing. I know it could be worse. I thank God for my babies and all I can do is beg him with what's left of my soul to keep the rest of my family safe. But I think I'm filled with hate. I hate cancer. I hate chemotherapy. I hate the doctor. I hate the word's "How are you," and "are you okay?" I hate other's happiness. You should hate me for saying that. It's disgusting, but I can't stop it. I hate the red lines on the hospital floor leading the way to what felt like a death chamber. I hate the orange plastic chairs in the hospital room that beg you not to sit in them. I hate how my burning eyes keep reminding me that there are more tears coming. I hate the navy blue scrubs the nurses were wearing when they handed me one-ply kleenex and asked me if "needed anything." I hate the doctor who tapped my hand like I had a disease and said, "It's going to be okay." I hate the voice in that elevator that said, "Going up!" like it was happy that the bottom just fell out of my world. I hate people sitting there staring at me and not knowing what to say. I hate watching people who couldn't hold a candle to my Daddy walking out of the hospital without a port in their chest. I hate thinking about the future. I hate thinking about the present.  I hate feeling like I can't stop crying. I hate feeling like I have to stop crying so that the people around me won't feel awkward. I hate thinking about his pain.

I would ask God again to save him. To do SOMETHING. But I can't. I hear the words in my ears, but they just don't go anywhere. I've got nothing left.

Dear Daddy,
Remember when I was in middle school and I cut my hair short and you said you wouldn't be able to grab my ponytail anymore? That made me so sad. I never wanted to cut my hair again. And do you remember that time I slapped that boy in high school and you were actually kind of proud of me? I wish I could slap your pancreas. I love you.