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