Christmas where you are

Dear Daddy,

Christmas Eve is here. I knew it was coming. I'm trying so, so hard to keep the joy. The girls are so happy and excited, as if nothing is different. That makes me so happy, and yet so very sad.

My sweeet Daddy, how you loved Christmas. All those months of watching and listening to us to decide what the perfect gift would be. Then a few more months of trying REALLY hard not to tell us what it was. I could hear your voice first on Christmas morning. Your loud, silly voice when the girls bounded up the stairs to find you. It's going to be a very quiet Christmas morning here, Daddy.

Thanksgiving was harder than I thought. I ordered everything premade because I wasn't ready to pull that perfect turkey out of the oven and not have you there to start immediately picking at it and hopping around saying, "HOT, HOT, HOT!" as if you were surprised. Then after the meal you would find just the right spot on the couch, turn on the game and force us all to go in the other room because we didn't want to ruin your nap. It drove me absolutely crazy. And now I would give just about anything to have another chance. John missed you too- he told me later- it was lonely for him without you. He thinks of you every holiday when he turns on the John Wayne movies and has nobody to discuss the shooting techniques with.

I think about you every day, Daddy. Maybe every hour you cross my mind. Last weekend we watched videos of you and it was so overwhelming to hear your voice. I had avoided it for just over three months. J planned our family Christmas for the 15th, which was the anniversary of your diagnosis. We didn't talk about that elephant in the room, but we did drink too much, tell embarassing stories about you, listen to saved voicemails from you and watch all the videos we could find with you in them. J says he makes himself do it even though it hurts because it reminds him that you were real. I know just what he means. I go through my everyday life with this constant feeling that something is missing and I'm just used to the space. I have to remind myself that you were here. You were real. You were mine. It wasn't much, but you would've been happy with it because we were together and we were thinking about you.


K is amazing, Daddy. She's reading like a maniac, she's happy at school and she's just as much a cuddle bug as ever. I asked her last week why she hasn't really cried about you and said, "well, I did, but I know he's in heaven so I guess I'm just okay." The faith of a child.  L gives me fits. How I wish I could call you when she's driving me absolutely nuts so you could laugh at me. She still tells me that she's The Hopper because Papa said she is. When I tell her Nene's coming she yells, "YAY! And Papa too!" It makes me so happy and breaks my heart at the same time. I tell her you're probably thinking about us and that you would be here if you could. The little Bear talks about you often. She misses you and still surprises me the most of the three of them. She has such a caring and tender heart. She has this sensitive honesty, and yet she is not pulled down by other's sadness. She will gently rub my back or leg when I cry about you and then she'll skip away humming a tune. She should be a nurse. Her joy would bless people. When the shooting happened last week in Conneticut, I wept for those poor babies and their parents. A thought crossed my mind, though, that brought me some peace. You're with them. I just know you're having a catch or tossing a football with those sweet little boys. You're playing hide-and-seek and having tea parties with those precious little girls. You're teaching them. I know you are- Jesus would want you to teach the children. You have to be the best story teller in heaven. Oh how I wished those poor parents could know that those babies would be well cared for (and that they would surely learn all the words to Yellow Submarine). You were the world's most fun Daddy and I'm thankful they have you.

We're all doing our best, Daddy. We miss you so much and make you a constant part of our lives. We learned so much from you, Daddy. In life and in death. I look at the bookmark on your computer that says "Our Blog," and I just can't give it up. I know you can't write me anymore, Daddy, but I want you to know that I write you every day in my heart. You made Christmas so perfect, and I will remember that joy always. Merry Christmas, Daddy. I love you so very much.

Miss you

Dear Daddy,

Yesterday was one month since you left. The impact that it had on me caught me off guard. I'm not really one for anniversaries. Dates don't really bear a lot of weight- they're just a day like any other. I don't usually feel more pain or joy on an anniversary than I do on any other day. This one is different, though. I think because it forced me to face the fact that time has continued to pass, even though I feel like it has been standing still.

You probably know this from where you sit now, but everything is okay. The night you went was horrible. Only someone who has witnessed it can possibly understand. It was the most traumatic event I hope to ever experience, yet I wouldn't have changed it for the world. I begged God to take your pain away, yet begged Him not to take you from me. My soul was forever changed that night. You blessed me with an incredible brother who was my backbone, my bodyguard, my best friend. You must be so proud of how strong he was and how he held me up. You were so strong, Daddy. I'm sure it sound cliche by now, but nobody will ever understand unless they were there. You were your own man, the master of your fate and the captain of your soul until your last breath.

I managed to ensure that your last words to me were, "I love you too." Your granddaughters were brave, too. I hope you saw how our little Bear hugged you, kissed you, held your hand and covered you in sparkles so the angels could find you. She loves you more than you ever knew, Daddy. Yesterday I asked them what they love most about you and she said she loves how silly you are. Kate loves how you sing with them. They still sing your songs. Yes, I'll make sure they always do. Lauryn sometimes walks around singing, "bushel and a peck" for half an hour straight. They are so strong. Stronger than me.

Sometimes I think I'm doing okay because you loved me so well and so deeply that I have enough love to last a lifetime. Then I have days, like today, when I think that I've just been so busy that I haven't fully grasped what the rest of my life will be like without you. I have good substitutes, but my days are so lonely without you to call. Nobody cares like you did. Even though I know I am loved, the world is so empty when someone who loved you from your first breath has taken their last. I carry your love for me in my heart, but it's still gone. It's no longer tangible. You are a memory now. That's what hit me the other day-walking out to the mailbox- my Daddy, so real just weeks ago, is now just a memory. The memory of you takes my breath away, but everyone else has to keep breathing.

Uncle B said he dreams about you. John did too. I told them I didn't want to dream about you and so, of course, that night I dreamed about you. It was Christmas. You were there the whole time, standing by the tree, opening presents with us (you were silent, I later realized). I left to go somewhere and remembered that I had been to your funeral. Suddenly I wondered if I was crazy. If anyone else had seen you. It had been so natural to me that you were there, but I was scared to ask John if you were really there because I was afraid he would think I was crazy or tell me that I had imagined it. Maybe I hadn't really been to your funeral. I drove around trying to decide if I should go back to see if you were still there. Then I woke up. I don't mean to make you feel bad, but I dread Christmas now. Oh my goodness, how you loved that holiday. You loved giving gifts and you were worse than a child at keeping secrets. I just can't imagine finding the same joy from now on that I had when you were here.

Daddy, I miss you so much. I love you so much. No illness, no death, can take that love away. What is love without an outlet, Daddy? What do I do with it? It's not a love that I can give anyone else- it's only for my Daddy. Thank you for teaching me how to love.

A day with the Lord is like a thousand years and a thousand years is like a day. I'll see you in a day or so, Daddy.

Goodbye

Dear Daddy,

I think this will be the last letter I write you while you're in this life with me. I've known for nine months now that this day would come. I knew I wanted your words to keep with me after you were gone. I knew we wouldn't want to leave anything unsaid. But I always thought I would have one more chance. A warning. I thought I would know when it was time to ask you to write me one more letter. I thought I would know when you set foot in my house for the last time. I thought I would remember the last time I heard your laugh, heard your voice before it was weak and faded. When you kissed my babies goodbye before your trip to heaven. I thought we would have a chance to sit down and talk about your decision to come home. We would cry together and talk about how brave you've been and then you could gently go home. I thought I would know.

You grew weaker over the last month. I knew when they told you to start using a walker that it was getting closer. Last month we had such a good time at lunch. We sat outside at your favorite mexican restaurant and talked for hours. Then for our last lunch on the 21st we went to the chinese place. You were so weak, but your spirits were reignited because of the drop in your CA-19-9 numbers. But you were changing. It was like you were out of subjects. Disconnected. So, you took your chemo that day, but you didn't bounce back like you usually do. Every day that I called, you were feeling worse than the previous day. I wanted to have hope, Daddy, I really did. I tried so hard, but I just couldn't. Then you fell. The first time was Wednesday. Mom must've been so scared. You didn't want her to call anyone. I understood. You knew if you went to the hospital that you wouldn't make it out. I thought originally that it was just a cancer fear, but now I think that your body knew your soul was leaving- and you just didn't want to quit fighting. Then Friday you got out of bed by yourself and couldn't get up. She had to call the paramedics to get you off the floor and you were so mad. You wanted to come over to my house so badly Saturday so you could be with all of us. I should've known you wouldn't be able to come, but I really thought I would have you there one more time. We came over to see you Sunday. You made me go through the safe with you and look at important papers. We talked about how they would probably put you in the hospital for another plasma transfusion on Tuesday. I wondered if any transfusion could renew the spirit you had lost. Then Monday came. You couldn't get off the couch. We just couldn't wait for help anymore, Daddy. We were scared, so the ambulance took you to the hospital. You started fading there. You were tired and you seemed like you were confused. They told us that you didn't have any infections, so they were trying to find a diagnosis in order to admit you. I felt like screaming, "as if liver cancer isn't a diagnosis?" They finally took you upstairs where they told us you had infections. Then they said you didn't, then they said it was kidney failure, then it wasn't. On and on we went with them while you kept fading. I knew Monday night. I knew I needed to let go- that you needed to let go.

I finally had the courage to ask Lynn what cancer markers really meant. Every week for nine months I've wondered how high they would get before you died. She told me that she has never seen anyone alive with numbers as high as yours. Ever. I wondered how we could be so naive. Especially since your numbers were even higher last month when you were still with us. Then I just got so proud. So very, very proud of you. You are stronger than any patient she has ever seen in her career. She told us that she thought you needed to come home and rest.

I felt like you needed to know that you were the toughest patient they've ever had, so I told you. You woke up enough to look at me and say, "really?" I think you told me you had to think about it. I told you that you were tough enough to keep fighting if you wanted to, but that if you were too tired to fight anymore then you could sleep because you already won. You told me you were just to tired. I asked you to tell me one more story about you and me. Of course you told me how much you loved our Saturday morning dances. And oh, Daddy, I did too. Dancing with you made me who I am. I just want to beg you not to go, Daddy. Why didn't I dance with you one more time, Daddy?

This morning you woke up enough to hear the doctor tell you that he could keep giving you IV antibiotics for a few more days so that maybe you would wake up a little. Be more aware. More aware of what? So you and Mom talked and you told us you just wanted to go home. Here we were, exactly where I knew you wanted to be, and I panicked, Daddy. I got so scared that you were giving up because you thought WE didn't want to fight anymore. God, I hope you didn't think that. I told you over and over that we could keep fighting, but you're just so tired, Daddy. You're just not in there anymore. Did I want you to give up for ME, or for you? I feel so guilty, Daddy. You know I would fight with you until the end, right? I've fought with you every week, Daddy, I wouldn't give up now, but we just can't make it any better. I'm so sorry, Daddy. So sorry that I couldn't will you to be better, that I couldn't cause a miracle to happen. I'm sorry I listened to you when you said not to come to the last chemo appointment- even though they wouldn't let you have chemo. Why did I listen to you??!! Why didn't I listen to my heart?? I could have had one more lunch with you, Daddy, and I don't think I'll ever forgive myself for that. Did you know that was the last one, Daddy? If I let myself start thinking about all of the things I regret I don't think I can go on.

Here we are now. At home like you wanted to be. You won't take your medicine. You won't really wake up anymore. It hurts so much, Daddy. I'm trying to remember that last normal conversation I had with you and I can't right now. I miss you so much, Daddy. I want you here, but you're not really here, so then I start thinking you should go. What good is this now, Daddy? If I didn't already ask you, it's too late. Last chemo you told me to ask you anything I wanted. I really couldn't think of much because we've talked so much, but I asked you to tell me more about your childhood. How could you leave so quickly, Daddy? I'm not ready. I'm not ready for you to leave.

I left very early in the morning to get here Tuesday. It was so dark and foggy. I looked ahead and the road actually looked scary. I couldn't even see the road in front of me. Sometimes I would go down a hill and fog would actually surround me, but I kept going. Then I realized that the road was just like my life now. It's so very dark and scary, and I really just want to stop the car, but I know the road is still there even when I can't see it, so I keep driving. I kept driving to you, Daddy, just like I'll keep walking through life to get to you in Heaven. This morning it was a little lighter. Still foggy, but the sun was rising. I wondered if God was trying to teach me something. Trying to tell me that the sun would rise again and my fog will lift some day.




Oh, Daddy. Thank you. Thank you for being everything to me. Thank you for playing hide-and-go-seek with me on rainy days, for letting me be silly or sad, for pulling on my ponytails, for buying me a puppy, for letting me be myself, for pretending to be my angry boyfriend when I was being bullied, for always forgiving me, for always loving me. Thank you for showing us how to fight bravely, Daddy. My babies will always know how hard you fought to be their Papa. God help me, I'm going to miss you so much, Daddy. I'm so proud you were mine, and I'm so proud I'm yours. I won't be as scared to die now because I know my Daddy's waiting for me. Now sleep, Daddy. Please go home so you won't hurt anymore. It's time now, Daddy. It's going to be okay. I love you Daddy, always and forever.

Inevitable

Dear Daddy,

I can't sleep. I keep watching stupid MTV trying to avoid the thoughts that are burning holes in my brain, so I decided redesigning the blog would get my mind off of them. As you can tell, neither effort was successful.

You and I keep talking about how we haven't written in so long. Not surprisingly, we're on the same page. When we write, we go to the deepest part of heart and soul. We can't stop ourselves from admitting the truth. For months now, we wanted just to live, which meant closing that part of ourselves for a while. It's not that we are in denial of our reality- quite the opposite, actually. We are so keenly aware of our reality that we needed NOT to write about it for a while. We needed just to be in the moment without looking back. Sometimes that moment was laying on the beach watching the babies play. Sometimes that moment was laying in a hospital bed watching the seconds slowly pass. Can either moment ever really be put into words anyway?

I wonder if you'll think it's strange that I felt compelled to write on a day that brought such unexpectedly good news. I don't know if your doc had ever seen cancer markers decrease that drastically in someone with your cancer in it's current stage. What an amazing sense of joy overcame me. The thing is, though, it doesn't take one bit of the pain away. I don't mean to sound selfish- I am so grateful to God for what He is doing for you. I just don't know if I can feel joy the way I used to.

We were talking today about how your victories change when you have cancer. We heard the story of the woman who was overjoyed that she didn't have the "mutant gene." O joy of joys, I only have the REGULAR cancer gene! But I get it. Don't you? That was her victory. Amazing, isn't it, that God can help us find victory in our pain? Nonetheless, I gave up my hope a while ago. I've told you before that I don't mean that in a hopeless or defeatist sense like it may sound. I am simply at peace with my hopelessness. I don't waste my time "hoping" for anything. I simply accept what today brings as either wonderful or crappy and I try to roll with it. That works well as long as the people around you accept that. When they don't, it can get painful and frustrating. I shared the news with such joy, but here I am tonight and you still have the damn cancer. Am I joyful that the chemo is giving us more time to enjoy, or am I bitter that I have to resort to living my life in '3 on, 1 off' cycles of uncertainty and fear? I guess I can be both. I am both.

We didn't finish talking today about what it's like to remember life before cancer. I realized that I haven't even thought about it in months. Isn't that a strange feeling? Nobody could have explained to me how that would happen. I know that's what people mean by 'the new normal,' but I'm not getting comfortable here because 'normal' is just an illusion. We have to be prepared now for constant change. Doesn't that just wear you out some days? I do not let myself visit the past, which is a shame because there's so much joy there. Then again, the joy is exactly why I don't visit. Someday I hope that will change.
With J's Mom and her injury, K's big change, going back to work and thinking about cancer, I've been feeling like I'm going to implode. That is not to say that I don't realize how many people have much bigger battles that me. I find myself thanking God so much more for all of the wonderful things with which He has blessed me. That just doesn't erase my personal pain tonight.



I meant what I said today. When I woke up this morning, the very first thing that popped into my head was how incredibly brave you are. When I say you have surprised me, that doesn't mean that I DIDN'T think you were strong before this. It just means that a different person has emerged from within you. One who we never knew existed. He has all of the fortitude and attitude of my old Daddy, but the new one has this strength- this fight and stuborness that the old one didn't need. You are just amazing. Remember, though, Daddy- you don't have to do anything for anyone but yourself. If doing it "for us" makes you stronger then that's okay, but you'll never hear me tell you what to do. You are still the master of your fate. Well, you and The Master. He's really the only one whose opinion counts. I love you so very, very much.

Not Superman, but...

by Dave

Most of you who have been following our blog know that last Thursday I had an unexpected setback in this battle.  A blood clot developed behind my right knee (common for cancer patients, I learned) and threatened my life. 

I was directed to go immediately to the hospital where I spent the last 4 days.  I learned much in four "short" days:

- that I'm not "Superman" in this fight with cancer.  Things CAN go sideways (and likely WILL from time to time).

- to appreciate - even more - how well things have been going.

- that my family is beyond comparison (OK...I knew that already).

- that my wonderful friends will never let me fall.

- that my years investing myself in my students on a personal level has paid off and continues to pay off.

- that my colleagues, my co-workers, have a depth of compassion and love for me that I truly wish EVERYONE had at work.

My little girl is a MASTER organizer, and one of the events she enjoys organizing most is a surprise party.  She had a wonderful Chicago-themed party planned for me this weekend, and she had the best co-conspirator possible, our Departmental Office Manager, Michelle.  The only problem was, I had been rushed to the hospital two days before.  Somehow, she got a hold of all the attendees...many from out of town (including a former student who came all the way from Minnesota) and informed them that the party had been moved - to the hospital.

There were probably 70 people waiting for me as the head nurse of Union Hospital wheeled me - in full hospital garb - into the party.

I had never been so surprised in my life.  Family, church friends, work colleagues, current and former students PACKED the room.  How I didn't cry, I'll never know.

It was the most humbling event of my life, and obviously a huge blessing.  I made sure to greet every single person there, despite some physical discomfort.  How could I NOT? 

There were countless cards, and one VERY special gift...the gift of a lifetime, in fact.  My friends at work got together and bought two tickets to the Beach Boys 50th Anniversary Concert in Chicago!!  There was never a more perfect gift given at a more perfect time.  I was and still am at a loss for words at their generosity.  It's something I will remember forever.

Finally, I learned that the most important weapon anyone can have in a battle with cancer is a rock-solid certainty that they are not alone in their fight.  After last night, I KNOW I'm never alone, and I'm so very, very thankful - and STRONG.

.......................................

Dear Mouse,

You absolutely amaze me.  What did I ever do to deserve a daughter as wonderful as you?

Love, Daddy



"You Confuse Me"

by Dave

That's what the oncologist said as he walked in the room today.

"You confuse me."

That's not the first time he or his NP has said that to me.

They can't explain me.  For now, I can live with that quite nicely.

Today I received the results of my first mid-chemo CT scan, along with the first set of cancer marker results.  It couldn't have gone much better.

While the CT showed a couple of additional spots on my liver, the doctor believes that they may well have been there all along but just showed up because this most recent CT was the first "contrast CT" that I had.  But the REAL good news is that the cancer markers are WAY down: from 13,500 to 11,500.  Add to this that I haven't had a single pain pill in 22 days, and have only taken 4 anti-nausea pills EVER, and the fact that both my liver AND the cancer have shrunk, and it adds up to one thing:

My oncologist is confused.

I can live with that.

I thank all of you from the bottom of my heart for your prayers, notes and phone calls.  You never know how much they mean until you find yourself in a situation like this (and I pray you never do), but they are such a source of strength for me.

Please keep them coming.

To God be the Glory!

Dear Mouse,

I feel like I have given this cancer a hard right punch in the mouth, and it feels SO good!  I hope it won't be the last good shot I give it, but by God, I at least landed ONE.  You know that you give me so much strength.  I think about my family and I just want to fight as hard as I can until the bell rings.  You would expect that from your daddy, and I never want to let you down again.

Love, Daddy

Numb

I've been evaluating myself lately. Trying to figure out what has changed in me because of what has changed around me. Daddy and I have both talked about the ups and downs, the sunshine and the shadows, the roller coaster. For me, though, something has changed more than I had realized. I just figured it out yesterday after a woman finished yelling in my face. As I stood watching her mouth move as she ranted and raved, I thought very briefly about saying some ugly things to her. In November I would have. She would really have gotten under my skin. I was upset afterwards,  but not really because of her. I think it just activated my emotions which, for several weeks, have been pushed down to a place so deep that I didn't know it was even there. A place so deep that even when my throat starts to burn like fire and my eyes sting like knives, I can stop the tears because their journey from that depth of my heart is so long. I never used to be able to do that. I started thinking about it and realized that I really didn't care. I didn't care what she said to me and about me. In fact, I don't care about the vast majority of the things I cared about a month and a half ago. It's not that I have negative emotions about people or things- I just don't have positive ones either- I'm numb.

That shadow and sunshine thing- you can only take it for so long. Eventually, it seems, it turns to just shades of gray. I know this sounds like a bad thing, and I suppose in some ways it is. I can't say that I've been truly happy since December 15th. That's not to say that I'm walking in the constant pain and sorrow that I was during those first few weeks- that would kill me and destroy my family. I appreciate my husband, children and my few close friends more than I ever imagined possible. What has happened is that, instead of that constant pain, I'm just numb. In situations like the other day, it turns out to be quite a good thing. It's like my 'shield of numbness.' It protects me from issues that don't really matter.

The fact is that I just don't care as much. You name it and, except for my family, I don't care as much about it now as I did a month and a half ago. Some of it is the little stuff like the 50 million committments I had for my time. Some of it is bigger- like my persistant need to work to get people to like me. I just don't have the time or the heart for it anymore, and maybe that's not such a bad thing.

Some days, though, I miss the colors. The gray is exhausting in it's own ways. You have to pretend that the gray is normal. That it's always been that way. You have to forget that you ever saw the colors because thinking about them will hurt in such indescribible ways. You get tired of feeling guilty everytime you laugh, so you laugh less. You get tired of talking about it, so you talk less. You get tired of feeling like nobody understands, so you stop trying to explain. I believe that the colors (the sunshine) will come back some day- I have to believe that- but during this transition period I just have to be- numb. I prefer it that way. It hurts less.

Dear Daddy,
Let me give you the first two examples that come to my mind after just reading your letter. The first is my favorite. When those girls were tormenting me in high school, I didn't know who else to go to. Unfortunately for you, you were always the one I would turn to in the difficult times. I was so scared of them and what they might do to me. What you did that night didn't just prove to me that you can do an awesome impression of a big, scary black boyfriend on the phone. What you did showed me that I had nothing to be afraid of. That I was capable of protecting myself. That the words bullies use to scare you are just that- words. You didn't just think like a parent that night. You thought like. . well, exactly like I needed you to. Do you know how much that taught me that I have taken with me into motherhood? No, you probably don't know. The love, courage and humor that you taught me that night made me a better person.
If that's not enough for you, let me tell you the other thing. You found a way to push me to finish college. You get mad at me so rarely. There's nothing I hate more than disappointing you. Even though it wasn't easy for you to get mad and make it clear that I was disappointing you, you did what you had to do. If you had not done that, I would not be where I am today. I wouldn't have had the career opportunities that made me who I am. I may not even have met my husband. That push changed my life forever. I am forever grateful.
You have always known what I need. Whether it's agreement, support, rebuke or a big, black pretend boyfriend; you have always been there when I needed someone or something. You have encouraged me and taught me things too numerous to count. Have no doubts. I love you.

The Shadow vs. The Sunshine

(From Dave)

If it's all the same to you, I've had enough of this cancer, OK?

Don't misunderstand: I am grateful for the (so far) good news on chemo treatments; the love, compassion and prayers of so very many; the good days I've been blessed with lately; the visits to and from family; the lunches with former students; the support and protection of current students - and so many other expressions of love on Facebook, on the phone and in cards.

That's the Sunshine.

But The Shadow, the spectre and reality of cancer, is ALWAYS right behind it.

The Shadow is turning me from a perpetual optimist into someone who can't smile for very long out of a sense of self-preservation.

I'll tell you what: if you ever are considering buying a used car, buy one from an oncologist.  They don't really know how to sugar-coat things.  Even on good days, my mind goes back to what one of the doctors told me within a few days of my diagnosis: "even if the chemo works for a while, eventually the cancer will win."

The Shadow.

So that's where I am every single day: enjoying (within strict, personally set limits) whatever Sunshine I get, but ALWAYS with an awareness of the imminent arrival of The Shadow.

In four hours, I'll have my first post-chemo CT scan.  You can imagine the Shadow vs. Sunshine Battle this morning.

I know that my liver has shrunk noticeably and that I have felt great for over a week (Sunshine), but like an oncologist, a CT scan can't lie.  Will other cancer be detected (Shadow)?  That's where I am.

I would love to always be positive and inspirational here for those of you who are sharing this journey with Angela and me, but that's not really the purpose of this blog.  I will say that it HAS been a great week in terms of how I've been feeling, and I thank God daily for His mercies.  (FOOTNOTE: What would people without faith do in a battle like this?  I can't even begin to imagine.) 

But know this: sometimes the smiles come slowly from me, and sometimes they're forced.  I WANT you to see the strong, "hangin'-in-there" side of me.  Heck, I WANT to be that guy!  But if I've learned anything at all since December 15, it's that The Shadow is due shortly after your words of encouragement, your hug or your note.

That's why I need you all so very badly....YOU are my Sunshine.

.......................................

Dear Mouse,

I tried thinking of times (or even A time) when I encouraged you in a significant way when you were facing something tough when you were little (FOOTNOTE: My daughter is my primary source of strength).  It scared me a bit that I couldn't recall a specific time except for the time when you were having a little trouble keeping the "chatting" down in school.  You and I developed the "Go to school-Go to Work" goodbye every day until the problem passed.

I still want to encourage and inspire you, and pray that this damned disease doesn't prevent that.  Love, Daddy





Just Call Me....

by Dave

This is weird.  An anomaly.  It just doesn't happen.

Yet it IS.

Almost everyone who reads this blog knows someone who has been through chemo.  It's usually a mixed blessing: you get chemo's cancer-killing benefits, but you also suffer some discomforting side effects that vary in intensity based on the type of chemo to which you're subjected.

But apparently not me...at least not yet.

Here was the majority of my conversation with my doc yesterday; word for word:

Doc: (Feeling my stomach area) I don't need to wait for the CT scan in 2 weeks to be

         able to tell you that your liver has shrunk noticably.  Me: Is that good?

Doc: Yes, absolutely.  Me: Awesome!

Doc: So...how you feeling, tired, huh?  Me: Yeah, especially the last week off chemo.

Doc: What about chemo weeks?  Me: I feel great.

Doc: You feel GREAT on chemo weeks?  Me: Yeah.  Isn't that the whole purpose?

Doc: The purpose of chemo is to kill cancer cells.  Me: Exactly. 

(Doctor tilts head quizzically.)

Doc:  Any nausea?  Me: Very little.  I think I've taken four of the pills.

Doc: This week?  Me: No, total.  (Doc tilts head again.)

Doc: Any vomiting?  Me:  Not since 1991.  (Doc raises eyebrows but doesn't look up.)

Doc: How's your appetite?  Me: Great.

Doc: Any diarheia?  Me: No.

Doc: Constipation? Me: No.

Doc: Any swelling in your feet or ankles?  Me: No.

Doc: How about hair loss.  Me: Not yet.  (He raises his eyebrows again.)

Doc: Any coughing?  Me: No.

Doc: Any sores or burns inside your mouth?  Me: No.

Doc: Mind if I take a look?  Me: Go ahead.

(Doc shines flashlight in my mouth, has me move tongue around.)

Doc: This is quite amazing.  Me: What is?

Doc: It is like you are taking all of the benefits of chemo, but suffering none of the side

         effects.  Me: Isn't that the ideal?

Doc: It is, but you need to understand: the severity, the intensity of your specific chemo

         protocol couldn't be much rougher.  I have never seen anything like this.  How did

         you feel after your very first chemo treatment?  Me: MUCH better.  I felt

         immediate relief from each of my symptoms.  (Doc tilts his head and stares into

         my eyes.)

Doc: Well, you are one in a million...maybe less than that.  I can't explain it.

Me: I can.  I serve an awesome God alongside a number of strong Christian friends who

        have been praying for weeks.  I also have other friends who, through their love and

        compassion keep me encouraged, laughing and focused.

Doc: Well ask them to keep it up.  This is amazing.

Amazing.  Yes, it is.

I've wondered throughout this journey what people without faith in Jesus Christ would do in my situation (and I write this knowing that several readers are not believers - I love you, too).  But there is nothing, NOTHING that tops the power and comfort of the prayers of those who love the Lord.

Yes, I know this high tide is unlikely to last.  But I ALSO know that every chemo treatment that goes like these first thee is killing cancer cells, shrinking my liver, and giving me at least more days or weeks.  And I believe if thinks go this way a while longer that could turn into months - even a year or more.

So I ask you to KEEP PRAYING.  It's working!

In the meantime, I have a new identity: "CHEMO FREAK" (cue Rick James)!

I LOVE you and thank each of you for caring and loving Angela and me through this.

Dave

Dear Mouse,

One of my favorite childhood stories of you is the summer when you claimed one of the desks up at the radio station and wrote out a sign on poster board that proclaimed you: "The Informashun Lady."  Clearly it was a self-imposed title, but it FIT!  Outside of myself, you were the only one up there who knew what was what.  You even served as the Traffic Director - a VERY important job back then - for the whopping salary of $20 (I always wished I had more to pay you back then).  But my inspiration this middle-of-the-night is claiming a title then fulfilling it.

If you can be The Informashun Lady, then I can be the Chemo Freak!

LONG MAY WE REIGN!!!

I love you with everything in me,

Daddy  xxOx

I Know

Dear Daddy,

That's so strange that you wrote about that. I was just thinking yesterday about the emotional weight you must be carrying. That's one of the things that had me so upset. I pictured myself in your shoes. One of the first things that I thought about is how guilty I would feel. Isn't that strange?! I thought I would feel so terrible that John was having to walk me through such a terrible thing. To carry not just the burden of my illness and his own emotions, but also the daily burdens of life that I would no longer be able to carry. It devastated me just picturing it. I will probably fear it for the rest of my life.

There's a song out now by one of my favorite singers, Martina McBride. It's actually about a woman who is diagnosed with cancer. Her husband tells her, "when you're weak, I'll be strong, when you let go, I'll hold on." Nobody can pretend that this is easy- or even that it's not a burden. That's just the truth. But it's not a burden from YOU. I know you know this, but let me remind you. NOBODY blames you. Nobody resents you. We hate cancer, we question God, but we love you. We love you even more every day.

The reality is that none of us knows how our story will end. . until it does. Some people have a story that ends abruptly, and others have a longer ending- an ending about and through which they can write so that maybe those they love can learn and grow from that experience. And who's to say which one if more difficult? We can live our charmed lives and assume that we'll be lucky enough to avoid tragedy, but for many of us, that's just not true. You are not the only one who has felt this way, who has carried this burden. We are not the only ones who have felt this pain. There is nothing I can say to make you feel better, except this: You would do it for us. You wouldn't even think twice about it. You would do it for mom, for me, for the girls, God forbid. We are doing for you not only what God asks of us, but merely what we know you would do for us. You have taken care of us our entire lives, now let us take care of you. And stop apologizing.

"I'm Sorry"

(Written by Dave)

I won't lie, it's been pretty rough since last Thursday.

The procedure to clear the port went well, but the drugs they used to clear it just absolutely laid me out.  It's been a slow road back to the "new normal" and has come only in small steps. 

Unfortunately, when this disease kicks you down, you can't hide it.  You can "man up" all you want, but sometimes the pain - or just the battle - exhausts you, then your wife is sure to notice.

When that happens, I stupidly tell my precious wife, "I'm sorry."  She looks at me in disbelief and simply says, "oh, sweetheart."  Then more tears.

But I AM sorry.

I'm sorry I screwed up our wonderful and exciting retirement plans.

I'm sorry she has to go through every gruesome step with me.

I'm sorry that virtually every night I soak the towel I'm forced to sleep on because of night sweats, or alternately, climb in bed shivering uncontrollably.

I'm sorry she has to see me get weaker and weaker.

And those apologies don't even touch all the other people who are so important in my life to whom I haven't had the inner strength to apologize to.

My Children:

I'm sorry I'm not the daddy you've grown to count on.  This disease slowly twists one more and more inward...something I fight every day.

I'm sorry I can't pick up your babies anymore, put them on my shoulders or play bing bong with them. 

I'm sorry I won't be there for their weddings or to see my great-grandchildren.

I'm sorry I may not be here to see my boy move closer after 12 years away.

My Friends:

I'm sorry I don't always return your phone calls immediately.  Usually the longer it takes me, the more I'm worried about breaking down (even in a positive way) in front of you.

My Students (Past and Present):

I'm sorry that I'm having more days when I'm less than 100%.  I love being around you so much, appreciate your love and enthusiasm so much, I want to be around you every day I can.

I'm sorry you have to take on more and more, but how it blesses and reassures me that you CAN and DO!  You are the BEST.

I'm sorry, former students, that when we've scheduled a lunch (to which I dearly look forward) I sometimes have to cancel because of a bad day. 

I'm sorry I may not be around to talk to a potential employer on your behalf; you gave me your best, I owe you mine.

.................................

I hate that ANY of the MANY people who have been so very, very wonderful to Kathy and me throughout this terrible/wonderful journey have to read tough feelings like this, but I promised my baby girl when we started this that we didn't HAVE to write about anything we didn't want to, but if we CHOSE to write about something, it had to be the naked truth.

..................................

Dear Mouse,

Last night I was trying to get my mind to go to a "happy place."  Mine went to the games of "hide and seek" in my office when you and Joe were little and attended University School.  We'd turn off as many of the lights as we could and tried to find each other (Joe was a VERY good hider...foreshadowing???).  I felt like a kid, too.  I looked forward to those games as much as you guys, and I STILL love a good game of hide and seek with grandkids.

I wonder how much the state paid me for all those games??   ;-) 

Love, Daddy



What They DON'T Tell You

(Written by Dave)

I know the emotions my beautiful baby girl wrote about in her last post (of COURSE, since we're connected at the heart).  And I'd be lying if I said I didn't suffer from them as well from time to time.  But the triggers are different for me.  As much as they tell you about this disease, there are many things they DON'T tell you; and discovering them, one-by-one when you're seeking SOME sort of normalcy (perhaps even feeling good) is the tough part.

They don't tell you you'll have to change your bed sheets almost every morning because of the incredible night sweats - at least until you find SOME sort of solution.  For us, that means I sleep on a thick, heavy towel - EVERY night.

They don't tell you how to discern if the pain you feel is from cancer - or just because you slept in a wierd position.

They don't tell you no matter how you "man up," you BETTER get that Vicodin in time.

They don't tell you that if anything goes wrong (like a clogged port) the cure will knock you off your feet for two days (when you were feeling great).

They don't tell you that, on top of adjusting to chemo, you're going to have to get used to seeing blood in the Kleenex every single time you blow your nose for 2 1/2 weeks.

I hardly ever rant on this special blog, but I guess it was my turn.  There are far more good days than bad right now (thank you, Jesus); last week the past few days have been rough though.

Dear Mouse,

Do you remember our nightly ritual of "around the table," or just what you see in the photos?  We both LOVED that special time, where either you or I (or BOTH of us) wore hats (or in my case a hooded sweatshirt as "The Screature"), you climbed on my back while I was on all fours, and we went around the table at different speeds and degrees of silliness as you got more and more tired.  Nobody TOLD me about that game, it just grew from our love.  Maybe there's something else they didn't tell us that will be as deliciously wonderful as that?

Love, Daddy  xxOx

Most of the week, I get by just fine. I stay busy enough that I don't have time to pause to think. I am totally able to give the canned answers that people expect when they ask how I'm doing or how Daddy and Mom are doing. And most of the time I don't even cry. If I do cry, I can usually shut them off pretty fast because I feel stupid when I realize that the other person has absolutely no idea what to say.

When I get to feeling sorry for myself, I watch a Lifetime movie about some poor lady who hires a nanny that sleeps with her husband and then kidnaps her kids. Or I'll start looking through other people's blogs. Seeing stories about parents who have lost their only child to war, or the woman my age whose little girl was unexpectedly born with down's syndrome, or the family who has two little girls with a terminal illness, make me realize that there are so many people in pain. Then there's the blog with the women who refuse to tell anyone the sex of their children or tell their children whether they are a 'boy' or a 'girl' because they don't want to "label" them or put pressure on them to be normal. They just make me feel like a pretty damn good parent.

Then, there are the other days. Like today. When I get so angry and so sad that I feel like I want to rip my skin off and be somebody else. Days when, in all honesty, I feel like I could run away- if it would do any good. I feel pathetic for feeling so pathetic. So the feelings of fear, anger, raw sorrow, embarassment- they just compound in my gut until I feel like my heart will explode into a million pieces because of the weight of those emotions.

I looked up the famous '5 Stages of Grief' today. I was hoping that Kubler-Ross could tell me how to feel next, or maybe tell me when I'll feel normal again so I can at least plan for that. Unfortunately, she did not. Here's what she says Daddy and I will feel:

The stages, popularly known by the acronym DABDA, include:^[2]

1. Denial — "I feel fine."; "This can't be happening, not to me."
   Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death.
2. Anger — "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"
   Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.
3. Bargaining — "I'll do anything for a few more years."; "I will give my life savings if..."
   The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..."
4. Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point... What's the point?"; "I miss my loved one, why go on?"
   During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
   In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event.

I was hoping that I was on acceptance and could prepare to neatly pack these emotions into a pretty box or organized filing cabinet and move forward. Unfortunately, Kübler-Ross added that these stages are not meant to be complete or chronological. Her theory also holds that not everyone who experiences a life-threatening or life-altering event feels all five of the responses nor will everyone who does experience them do so in any particular order. The theory is that the reactions to illness, death, and loss are as unique as the person experiencing them. Some people may get stuck in one stage.

Well, crap.

And, by the way, just in case you thought you had it all figured out with those 5 neat and tidy stages,

The extensive scientific studies of George Bonanno show that the Kübler-Ross stages of grief are, as Kübler-Ross herself explained, variable in extent and detail, and the entire process is not always completed.^[4][5] In Bonanno's book, "The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After a Loss,"^[6] he summarizes his rigorously peer-reviewed research based on thousands of subjects and conducted over more than two decades. His findings include that a natural resilience is the main component of grief and trauma reactions.^[7] The logic is that if there is no grief, there are no stages to pass through.^[8] Bonanno's work has also demonstrated that absence of grief or trauma symptoms is a healthy outcome, rather than something to be feared as has been the thought and practice until his research.^[9][10]
A 2000–2003 study of bereaved individuals conducted by Yale University obtained some findings that were consistent with the five-stage theory and others that were inconsistent with it. Several letters were also published in the same journal criticizing this research and arguing against the stage idea.^[11] Skeptic Magazine published the findings of the Grief Recovery Institute, which contested the concept of stages of grief as they relate to people who are dealing with the deaths of people important to them.^[12]

Thank you, Wikipedia, for being there at 4:30 in the morning when I need a shrink. Or some maybe less-than-reliable contradictory research.

So, Kubler-Ross and Wikipedia have no stage for freaking out about who you're going to call to side with you when you think you might have done something stupid and you need Daddy to tell you it's okay. There's also not a stage for how to sleep at night (without the help of cherry vodka) when your brain won't shut off, or how to stop taking your emotions out on your sweet babies. Thanks for nothing.

So, since I'm awake anyway, I need to make some additions to the Do's and Don'ts list. Please,
DON'T be offended if you've done a don't. Don't get all hurt and sad. I really only care a little bit if you do anyway, because my concern right now is what Daddy needs (and that should be your concern too), but I do care. We've all done don'ts.
I have an amazing friend whose husband has MS. They have two small children. I'm sure (although you'll never get her to admit it) that she experiences all 5 stages, plus my 3 additional stages and 10 more of her own, on a daily basis. One day, I was thinking about her and trying to imagine what I would need if I were her. I found some websites for people dealing with a spouse who has MS. I asked her if that would be helpful and she quickly told me that she is NOT into group therapy, especially with strangers. I felt stupid for a minute, but only because I really did want to help. So instead of crying and telling her that I felt really stupid (which would have seriously irritated her, I'm sure), I decided that I would just watch for ways I could help, because I knew if I asked she would never tell me. Besides, how did I NOT realize that she's perfectly capable of searching the internet herself if she wants to? Duh.
I have another friend who lost her Daddy to liver cancer before he ever met her babies. Then I have a friend who, in her lifetime, has lost a sister, a brother and a father. And another friend who cared for both of her parents in their final years of alzeimers and kidney disease. I wasn't there for any of them. I didn't know them, but even if I had, I wouldn't have done the right things, I'm sure. Now I know, though. I know what they know. That the people who help the most are the ones who expect nothing from you. The ones who are not offended when you tell them they're not being helpful. The ones who don't ASK you what you need- they just know. And then they do it.

But PLEASE,
DON'T cry to a sick person about how sad YOU are! Find another person to talk to about how sorry you're feeling for yourself, don't expect a person who is planning their eternity to make YOU feel better about the rest of your life.
And, on the other end of the spectrum,
DON'T avoid someone because you think you don't have the right words. You don't have to say anything deep and poignant, you just have to be there. Before you can't be anymore.

*rant off*

Dear Daddy,
Sometimes I feel guilty writing these things because I feel like I'm violating my own rules. But I'm guessing you already know how I feel anyway. ;0)  Sometimes I get so, so angry and scared that I want to scream at God, or run from Him- neither of which are really productive, or even possible. Then, sometimes, He will sneak in with something almost like a glimpse of my future. I can see, for just a moment, what a gift I have. This opportunity to love and appreciate you, to protect and advocate for you, to make sure that I've told you absolutely anything and everything I can think of that I want you to know. Oh, how I wish He would change his mind. But if He doesn't, at least He has given me time to accept His decision.
I used to love on rainy days when you would play "indoor hide and seek" with us (One of the very few things you could get Joe and me to play together). We ran and screamed with such abandon, we never wanted the game to end. Now, when I'm angry, sad, or just can't turn my brain off, I'll tell the girls it's time for indoor hide and seek. Sure, after the first time of Thing 2 standing in the middle of the room, covering her eyes, counting to 17 (while skipping 12, 14 and 15) and then screaming, "SIIIISSSY, you can't FIIINND me!" Thing 1 will sigh, "Hmphhh. Mooommm, I cannot PLAY with her because she doesn't DOOO it right!" But it gives me a reason to smile. Thank you for always giving me a way, and a reason, to smile. I love you.

I Never...But I DID...

(Writer's Note: This is a Dave post again...)

This disease causes one to take stock of their life: did I (or WILL I) accomplish everything I'd hoped?  Has all this been in vain (with apologies to Solomon)?  I'm not talking about a "Bucket List," (about which I have mixed emotions), but rather things like the following:

I never got to be a rescue worker like I wanted to as a child watching the obscure TV program "Rescue 8,"...but I DID get to help friends of ours save their marriage;

I never got to live in the old west with a rifle at my side like "The Rifleman,"... but I DID get to shoot with my brother Bruce and my sons TJ and John;

I was never as good a fisherman as I'd hoped...but I've had the BEST fishing buddies my whole life: Mouse, Joe, John Z. and John H.;

I never got to be good at sports, even though I love baseball and football...but I DID get to coach both my kids and enjoy the special closeness that a game of catch in the summer sunshine brings;

I never had many friends as a kid...but I DID get blessed with several wonderful, close, beloved friends throughout my lifetime - especially NOW;

I didn't have a very good family life as a kid, growing up with alcoholic parents and an abusive father...but I DID, with my beautiful bride, raise the two most wonderful, loving, strong, together children EVER;

I never could run very fast...but I can run JUST fast enough to catch my grandchildren;

I never was a ladies man...but I managed to get THE most beautiful, talented, loving woman at Illinois State University in January, 1975;

I never felt I was a very good co-worker...but I have the best co-workers anywhere I know of.  THANK YOU, especially Darlene and Michelle;

I never was very good in school...but I was good enough to get the degree that has been SO good to me for so long, and had the honor of teaching THOUSANDS of students over the years;

I never was good looking...but my granddaughter LOVES my short hair;

I wasn't able to avoid making some of the mistakes my parents made with me while my kids were young...but I DID convey, almost every day, how very much I love my children and how very, very proud of them I have ALWAYS been;

I never was as strong and exemplary a Christian as I had hoped to be...but I AM being given extra time now to try to do just that.

Loved ones, I urge you to consider every, single moment we have as God's gift.  Our time is really HIS time; eventually we have to give it back.  CHERISH the moments you have with your most precious ones and don't take the time - or them - for granted.  If there are friends or family with whom you need to share your faith or yourself......DO it. 

God has richly blessed me; I see that more clearly now than I ever could have before.  I am not bitter, angry or even scared...I know what comes next for me :-)  I am enjoying living life right NOW...more alive, in fact, than I was before the diagnosis.  I may not have done EVERYTHING...but I did SOME things  ;-)

Dear Mouse,

You know how I worry, especially now, about leaving things "undone."  We (you and I) are SOOOO alike that way.  Sometimes I wonder if I've left something - ANYTHING undone or unsaid with you or Joe.  I hope not.  Sadness at a time like this is unavoidable; regret ISN'T.

I love you more than my next breath.

xxOx
Daddy

"It's Wonderful - and Terrible"

(Writers Note: Angela usually starts these, but when I wake up at 3:30 a.m. with a post on my mind, I guess it's my turn.  ds)

People ask me "How's it going, or what's it like" almost every day.  Up until this week, my response was whatever came to mind.  I now have a new standard response: "It's wonderful...and terrible."

The terrible part is pretty easy to figure out, I suppose.  Nobody gets a diagnosis like this and thinks, "Whoa, bummer."  It takes weeks (maybe more for some) to get through the stages of grieving - usually associated with a passing, but certainly happened to me with this.  It's terrible.

It's also terrible to look TOO far ahead and imagine those you love without you.

Chemo and related treatments?  Maybe not terrible...certainly not fun.

But...WONDERFUL?

Oh, my yes, this HAS been wonderful in so many, many ways.

As we were traveling to Mattoon yesterday for Lauryn's birthday party, I turned to Kathy and said "You know, everything in my life is amplified now.  It's brighter, better, sweeter and more precious."

I see things in a completely new way.  I appreciate the fact that I'm still able to work and throw myself even MORE fully into my teaching.  I appreciate the humanity of people and will talk to complete strangers (SO "not me!").  I cherish in new and more special ways every single moment with friends and family...not in the desperate way of the last several weeks, but in a brighter, happier, in-the-moment way.

My life has been AMPLIFIED....WONDERFUL!

I watch in wonder as my beautiful, precious bride grows and becomes stronger every day.  We're learning the "new normal" together with fewer and fewer tears.

I marvel at my daughter's selflessness and determination, her toughness and her tenderness.  I hear the growth in my son every time we talk and Skype.  We have lost the need of the term "in-law" in our family: there are only sons and daughters, sisters and brothers.  My brothers John and Mark are no less brothers to me than my birth brother Bruce.  My sisters Jacqui and Lynda stand right there with my precious Silvia.  John is my son, Meghan my daughter.  WONDERFUL.

With my grandchildren (especially Kate) EVERY cuddle, tickle, kiss, game and chase is happier, more sweet and more important.  Every song with Claire, every laugh with Lauryn, every Skype with Luca and every "blown" kiss with Gianna gets infused directly into my heart and memory where it grows in value immediately.  I didn't think it was possible!  I told Kate this morning as we were cuddling in bed that I was like a "nice Grinch," because whenever I was with them they made my heart grow 13 times its normal size!  WONDERFUL.

At work yesterday, I stopped by the main office to drop off some paperwork.  My co-worker, Michelle, a cancer fighter herself, has turned into a close, compassionate, wonderful friend.  There were four students - just four of the 10 or so who are usually up at my office as my "other" family - with me.  Mic (Michelle) asked if they needed help, they answered, "We're his posse!"  Mic said, "they LOVE you, Dave."  They answered in unison and sincerely "WE DO!"  WONDERFUL.

My FORMER students?  On any given day, especially chemo days, I can expect an avalanche of phone messages, texts, e-mails and Facebook messages.  Led by people like Brent, DJ and Duff, they don't let my feet or spirits hit the ground.  WONDERFUL.

Friends?  Mine are beyond compare.  Kathy and I were already close with good friends like Craig and Carole, Scott and Dawn (my O.R. angel) and Rich and Joy.   Since diagnosis?  Amplified, brighter, more personal, more precious.  WONDERFUL.

Our church family has been there every single day with every single step.  We are aware of and cherish every single prayer.  So many angels bringing support, the Word - and FOOD!  WONDERFUL!

God is amplifying every moment, every second...making it brighter, clearer, tastier, more valuable.  It makes me wonder what it will be like when we're with HIM if it can be this good here. 

Dear Mouse, Thursday during chemo, I flashed back to when you were a little girl and had all those terrible ear infections.  We'd give you your medicine, and snuggle with you on your bed.  It always seemed like the only times we could really get extended cuddles with you were at book/bed/sick times.  In a wierd way, it sort of made me look forward to sick times.  I wonder if that's why I look forward to Thursdays, now.  ;-)  Love ALWAYS, Daddy

I've written a hundred journal entries in my head over the last week or two. Most of the time, there's something in my head that I can't bring myself to write down. I'm too afraid that it will hurt someone. But I guess that defeats the whole purpose of this thing.

Last week, we went to our first chemo. Daddy had a hard night the night before. Only those who have been on this roller coaster ride can truly understand what that's like. How it drains your soul. The lows of the ride usually last so much longer than the highs. So while we waited for the doctor, we talked about how badly Daddy just wanted one day to feel normal. He didn't even talk about the cancer going away, just wanting a day to have some energy and no headache, stomach ache, heartache.

The doctor told us that the Gemzar/Cisplatin regimen that Daddy's on will take 5 hours each time- 2 weeks on, 1 week off. I don't know what he was expecting, but it wasn't 5 hours. Then they took us in the other room and gave him six different prescriptions and told him that all of his hair would fall out. The original protocol would have left his hair. I could tell it hit him like a bullet to the heart. I did what I've become pretty good at- I think I separated from my own brain. God has given me the ability to pull away from my own emotions, my own fears, when I need to. I always wondered how people could stand at funerals without crying or go on Oprah a few weeks after their child had died. This is how. It's amazing really, but I wish I could have just gone on wondering how they did it.

When we walked into the "infusion room," I think we both almost threw up. I'm not sure exactly what we expected, really. But I can tell you that it wasn't rows of bald half-dead old people laying in recliners. We did it, though. The worst moment was the very moment that they pierced his port and let the chemo go. I had these visions of this poison coarsing through his blood. It physically hurt to think about it. I so badly want him to tell me exactly how it feels and exactly what he's thinking, but I know there are some thoughts that he just has to take to God. Five hours later, we went home.

The strangest part was the next day. I had mentally prepared myself for a sick, tired, balding Daddy. When I called him, though, he felt wonderful. He sounded- normal. He told me that he felt like he didn't have cancer. Over the next few days, each time we spoke he sounded even better. I couldn't put my finger on why that wasn't making ME feel any better. For some reason, every day as I'm getting ready to get out of the shower and get ready I have a breakdown. It must be something about the symbolism of starting a new day or something. So I would call and talk to him, hear his old familiar voice and then get ready to face the day with the peace of knowing how good he felt, and yet I felt worse. It's because my mind is forcing me to remember that he's NOT better. How selfish, I know. I'm so, so thankful that he's feeling good, I'm so amazed that God answered his prayer for some sort of "normalcy," and yet it brings me very little peace. That's the cold hard truth, I guess. I just don't feel any better.

Yesterday we went to chemo again. In the waiting room, we were forced to sit next to this woman and her granddaughter who insisted on telling us every detail of the woman's diagnosis, treatment, her breasts, her lungs, her remission, woes about the long wait, the weather. . they were relentless. We were 5 seconds from looking at them and saying, "we have our own problems, so would you just SHUT UP?!?" Normally we would have been able to tolerate them, but something about having cancer just pisses you off.

We were prepared this time, but we weren't prepared for his port not working. They couldn't push the chemo through it and had to give him one medicine through an IV. The other one can't be given through IV because it will destroy your veins. They scheduled an x-ray of the port for Tuesday, and we're just hoping that it's a simple placement issue and that it won't have to be removed and replaced.

For me, it's not dealing with the cancer that I'm struggling with this week, it's dealing with all of the other little crappy things. Yesterday, I heard myself telling God that I really didn't appreciate the fact that he would give us shitty roads on a chemo day. I was irritated that He wouldn't cut me a break. Then the port issue came up and I was angry again. Come ON, God! SERIOUSLY?! It's not enough that he has to come here, but you can't even make the damn thing work right?! Now, in the light of day, I have a renewed realization that, even though I can't see it, God knew these things were going to happen and I'm certain that there's some reason for it. I'm trying to turn my anger into strength, but some days are better than others. I still haven't opened my bible since the diagnosis. It should be the first place I turn, but I just haven't. I don't know what I'm avoiding.

So, over the last few weeks, I've been thinking about how amazing some people are and how stupid some other people are. I call them stupid with love because now I realize that I have been one of them in the past. I've been mentally compiling a list of Do's and Dont's for being around sick people or their families. Here's what I've come up with so far:

DON'T ask, "How are you?" Or, if you
DO, expect an answer of, "pretty shitty," and then
DON'T act all awkward when they say it.
DON'T say, "let me know how I can help," unless you are actually prepared to help.
DO feel free to ask questions about what it is like to deal with the illness and
DO feel free to simply tell them how much that sucks, but
DON'T tell them that you feel sorry for them. It makes them feel like a homeless leper.
DO ask if they would like you to forward them the research or stories you find on-line,
DON'T do it without asking.
DON'T be offended or hurt if they tell you that something does not help them. I have learned that every person is comforted by different things. Some people like to commiserate with others, but some people have their strength destroyed by this.
DO tell them that you don't know how they feel, but that you'll pray for them.
DON'T use your cousins sister-in-law who survived cancer as an example of why they'll beat it too. Your war stories aren't going to make them feel any better about their own battle.
DON'T say, "You're going to beat this." You don't know that. If nobody has ever beaten "this" before, it sounds trite. It would be better to say, "I'm going to pray that you beat this."
DO pray- if you say you're going to. Don't wait- do it right now while you're thinking about it.
DON'T take food over without asking. And if you would like to take food,
DO take food that can be frozen in case the person doesn't feel like eating it that night.
DO ask the person what they would really enjoy doing. Dad would rather go out to dinner with you than have you bring him soup like he's a senior citizen shut-in.
DO search your heart for what THEY need you to do or say. Most of people's actions or responses are done or said because they are thinking about their own emotions.
DON'T act as if they're already dead. Speak to them as you did before the diagnosis. Hug them, take them out, be patient, be THERE.

Dear Daddy,

I'm so glad that you're responding well to your chemo. I don't want you to think I'm not happy. It's just playing tricks on my brain. You've done so well that I can almost forget you're sick. Then it's so much harder when I remember that you are. Has that happened to you at all? I'm so glad you and Mom are letting me come to chemo with you. I love being there with you. I know that's weird. Too bad it took such a shitty thing for us to have 5 hours a week of uninterrupted time together, huh? I know you had a rough ride on the roller coaster this week. I hate that you had to stay on, but I was sitting right next to you the whole time. I can tell you for sure, though, that being on this ride has already made me so much stronger. It's an amazing feeling. I feel like, if I can get through this with you, I can get through anything. I know there's pressure for you to be strong, Daddy. I know you know we're watching you and hanging on to your emotions. I want you to know that I'm okay with anything you're feeling. If you're sad, we can be sad together and I'll still be okay.  If you're pissed off, we can be pissed off together and it will pass. If you're happy, I'll be happy for you. We can also take turns being strong for each other. That's what families do, right? I'm so proud of you.

Thank you for always letting me be who I am. You never told me I was too much or too little of anything- you just loved me the way I was. That helped me become who I am now- and I'm finally okay with that person. Love you.

Reflections

This week was a blessing. I've never had so many people in my house, so many messes, so many toddlers puking. I didn't mind a moment of the chaos. As a matter of fact, I would stretch it out if given the choice.

Call it denial if you want, but my brother and I were talking last night about how, mercifully, we have been able to force ourselves to temporarily forget-or ignore- cancer so we could get through the holidays without losing our minds. One of the good things that is coming out of this change is that my brother and I have talked more than we ever have in our lives. I have been awed at how similar our thoughts and feelings are. I don't know if it's just the natural progression of emotions or if it's a blood connection, or both.

Last night we both admitted that we haven't talked to most of the people we know since Dad was diagnosed. He said it was because he just doesn't feel like rehashing the terrible story. I said it's for a few reasons. I know that, in all liklihoood, whatever I say will make them uncomfortable and whatever they say will not make me feel any better. I'm also afraid that, because I can't find happiness lately, they will talk to me once and then find it too depressing to be around me. Then I figure that even if they don't mind being around me, they'll eventually get tired of hearing about it.

I know this will surprise those of you who know me, but I'm not usually a quiet person. Over the last week I've been thinking a lot about how I feel so lost and disconnected. I've been angry a few times about things people have said that are shallow. I've been trying to figure out who I am now- how this will change me. I couldn't really put my thoughts into words if I tried, but it is nice to have the opportunity to try. So I started wondering why I've been so quiet and why some of my friends have been so quiet. I was reflecting on how I used to respond when people I knew were faced with something like I am now. Then I got it- they're afraid they'll catch it.

I know they're not afraid they'll catch cancer. I think they're afraid they'll catch something else- sadness, fear, unanswered questions. Most of them probably don't even realize they're afraid. I know this because I did it. I used to change the cannel when commercials came on for St. Jude's or Cancer Treatment Centers of America. I used to pray to God to keep my family healthy and then force myself not to think about anyone I know who was unhealthy so I wouldn't become fearful. I used to buy sympathy cards and not even send them because I didn't know what to write. If someone I knew was dealing with an illness, I would ask about them through a friend before I would call them myself. I would give them a, "how are you doing?" and then try not to think about how they answered so that I wouldn't get too sad. Most of all, I remember feeling sad for my friends who have lost their fathers, but not ever really thinking about what it would be like to lose mine.

Over the last year or so, I've tried to face those fears a little more. I would send some money to St. Jude's without looking at the pictures of the children. I would go visit my friend with cancer and ask her to tell me about chemo and radiation. I tried to be more sensitive when people I knew lost family members. I don't know why I did these things, but I can't help but wonder now if there was a reason for it.

So you see, it's not that I can blame anyone. Sometimes I don't even want to hear my own thoughts. It does make me sad, though, that I'm so sad. I'm not generally a sad person, and I'm so afraid that I'm going to be sad forever now. I know that a part of me is eternally changed, and I know the change is not done yet. I have also learned that change- especially the kind that is forced upon you- is probably the most scary and painful thing we can experience.

The positive things is that I am already stronger because I have no choice. It's get stronger or die. I would rather have made the choice to face some of my fears on my own, but God made the choice for me. I am already learning to think only about today and let tomorrow take care of itself. Mostly because tomorrow is too scary to think about- and because I realized that all of those years of worrying and attempting to control the future were a waste of energy. And finally, I don't have to worry about catching anyone else's sadness, fear or unanswered questions.

Dear Daddy,
I know it was hard for you to leave today. It's so scary for all of us to face our lives again- to learn how to deal with the "new normal." None of us know how to get back to our lives because it's a new life entirely- one that we didn't plan or work for. What I cling to, though, is that we have each other. We appreciate every second that we spend together. We are stronger, and we love each other more. The worst Christmas ever was also the best Christmas ever. I think we'll probably have a lot of those days. Thank you for being so strong so that the rest of us can learn from you. I love you.