The Cancer Chronicles

New Year’s is not a time I have ever associated with Dad. But this year he is all I can think about. How he won’t be here. So I want to say this to him. I’ve been crying since midnight, with the exception of a little sleep.

Hey Dad. Happy New Year. I miss you so much. Sometimes I forget you’re gone and I think I should call you. Then reality hits and my heart breaks.

In the few months you’ve been gone you have missed so much. Daimion is looking for work. Logan called Ken DAD. Tim is back in jail….no surprises there. Rob bought a beautiful house boat. Mom is learning how to navigate life and who she is without you.

While I’m glad that you didn’t suffer long, I’m really pissed you left so fast. The memory of checking you into surgery and mom, Rob and I saying goodbye and we’ll see you soon. The following days in ICU. Little details follow me everywhere. This is not fair and I still hope you will come back somehow.

It’s the new year. This year I will be better. I’ll try to save money. I’ll get the oil changed in the car. I will help mom when she needs it. I will try to forgive you and the universe for all of this. I will be a better mom. I will be someone you can be proud of.

Hey Dad. If you get the chance, come visit me sometime. We’ve got other house ghosts. You might like them. At the very least you won’t hate them. Come say hello. I miss you.

I couldn’t come up with a better title. This is hard. I have friends and family suffering from loss, illness, cancer, grief. Greg and Robyn’s son just passed away.  Aymie’s cancer is back. Jen’s dad is very ill and her brother in law has cancer. Add that to my own grief and we have a perfect storm.

Mom is moving into a new house. While I understand why, saying goodbye to the walls that hold all the memories of dad is hard. While I usually deal well with change, this is something that I am finding very difficult. I know that I will carry those memories with me but it’s still hard.

Except to sleep, I haven’t stopped crying since yesterday. Yesterday it was racking sobs. Now it’s just tears rolling down my face. As much as I feel like life has stalled, it’s clear that it keeps going.

Daimion had his first birthday without dad. That was a hard day for me too. I don’t know what else to say.

I’m tired and sad and worn out.

I’ve wanted to write but just couldn’t find the energy. Last week I took dad home for the last time. I picked up his urn and took it home to mom. That was hard. Seeing Dad’s unopened saltine crackers sitting next to his favorite chair was hard.

But tomorrow is the day we say goodbye. Seeing him go through all of this, watching him die, it was all hard. But this is so very final. He’s not coming back. He will never be with us in body. While I know that he may be here in spirit, I can’t feel him! I can’t feel him. It’s very blank and empty.

Tomorrow our family and . friends will gather to say our goodbyes. I’m not ready. I don’t know that I could ever be ready. My heart is raw. There are so many thoughts and emotions that I can hardly get any of them out, which is why I haven’t written. Swirling crazy, all encompassing, fast, furious, indescribable. I wish I could get it out here but I can’t put it to words.

 

Tell me, what does it look like in heaven?
Is it peaceful? Is it free like they say?
Does the sun shine bright forever?
Have your fears and your pain gone away?

‘Cause here on earth it feels like everything good is missing since you left
And here on earth everything’s different, there’s an emptiness

Oh-oh, I,
I hope you’re dancing in the sky
I hope you’re singing in the angel’s choir
I hope the angels know what they have
I’ll bet it’s so nice up in heaven since you arrived

So tell me, what do you do up in heaven?
Are your days filled with love and light?
Is there music? Is there art and invention?
Tell me are you happy? Are you more alive?

‘Cause here on earth it feels like everything good is missing since you left
And here on earth everything’s different, there’s an emptiness

Oh-oh, I,
I hope you’re dancing in the sky
And I hope you’re singing in the angel’s choir
And I hope the angels know what they have
I’ll bet it’s so nice up in heaven since you arrived

I hope you’re dancing in the sky
And I hope you’re singing in the angel’s choir
And I hope the angels know what they have
I’ll bet it’s so nice up in heaven since you arrived
Since you arrived

http://www.youtube.com/watch?v=C4dci4Z7p6A

 

Yesterday we decided, as a family, that we would remove life support. There are so many questions that come with that. Does Dad want this? Is he screaming in his head to be let go, or to be saved? I don’t know. What I do know are the things that happened today.

When we got to ICU we all said hello. I told Dad that Uncle Roger and Uncle Russ were with us. Dad’s forehead scrunched up and he looked at me. Was that a cry for help? Was it just recognition? I don’t know.

We all had our moment with Dad. Mom asked me to go and and play music for Dad. Things he loved or things that touched us. So I turned on the music. We all cried. Tears that were ferocious and sad. Subtle and sobbing.

My Mom asked my brother, “Are you willing to proceed?” I couldn’t see Rob around the corner, but I knew his answer. Mom turned to me and said, “Are you willing to proceed?” With a heavy heart and racking sobs I said yes.

Danielle, our amazing nurse, came in and Mom told her that we were ready. She removed the dialysis and put all his blood back in his body. She increased his pain meds and gave ativan for anxiety. One of the Doctors came in and he cried with us, too.

The Chaplain came in. Asked if we would like a quilt. I said yes, please choose one for us. He came back and we laid the quilt on Dad. The Chaplain anointed my Dad’s forehead. He passed the anointing oil from person to person so we could all anoint him and say the things we needed to say. All I could say was that I loved Dad. That I was sorry. That he will always be in my heart and soul. And may I say that the oil doesn’t taste good. After kissing his forehead so much, my mouth still tastes like it.

The children’s support group spoke to me about care and support for Logan and Daimion and if I’d like my Dad’s hand print.

We all gathered around Dad. Each of us touching him. They removed the ventilator. We stood touching him. As I watched I could see color leaving. He didn’t breathe for what seemed like an eternity. He took only 3 breaths I think. Within minutes Danielle came back in and said, “He’s gone.”

At 9:15am she left to get another nurse. They both listened to his heart for about 5 minutes. Another eternity. She looked at the other nurse with this knowing, and then up at us and gave us the nod. His heart had stopped. She gently closed his eyes.

We stayed with Dad for a while as more color drained from him. As he turned a horrible shade of yellow. As he became so cold. Every time I was at the hospital I worried if he was cold. He always felt too cold, but not like this. This is so different.

The child support people came back and helped me take prints of Dad’s hands for the boys. Covered Dad up with red ink, the color of his Jeep, and press it to paper. They sent me home with more ink so Logan and Daimion can add their own hands to the pictures, if they choose.

And then we left. We left Dad. We walked away and went to do the things we needed to do. Or things we didn’t want to do. We walked away.

Goodbye, my dear sweet Daddy.

To anyone reading this, I have some advice.

1. They say it all the time, but seriously, don’t wait to say the things you need to say.
2. Don’t wait to make memories.
3. Take pictures.Take videos. Even of the shitty times. Believe me, you will want them, and if not,you can delete them later.
4. Keep recordings of people’s voices.
5. Be present for the people you love.
6. Love without chains. Forgive without strings.

Ok So obviously that title isn’t guilt over my surviving. It’s a mess of emotions over my Dad surviving.

Yes, I’m happy that he’s opening his eyes and sticking out his tongue and moving his arm. What I mean is that Dad has always been an active guy. What if he’s in a wheelchair? What if he can’t talk? What if he can’t move his body of his own volition? Is he going to be happy? Will he be mad that we fought so hard to keep him here with us? I don’t know.

I’ve been sick the last couple of days. Feeling like I’m swallowing shards of glass. I can’t go see Dad. It sucks. At the same time, it’s a reason to not see what I want to ignore, and I feel badly for that too.

Sign language is beautiful, but would Dad be happy with that as the only way to communicate? Should I start learning now?

Ok. I’ll dial it back a notch. I have to remember that we don’t have MRI results yet. We don’t know the damage. But I’m preparing for the worst case.

I am blessed for every new day that my Dad is here and we get another day to fight. Don’t mistake my words. I just want him to be happy to still be in the fight too.

I have prayed a lot. Before this surgery and since. I remember when Grandpa, Dad’s Dad, was dying. I had still been holding hope. I remember praying one night, laying in my bed in our house in Springfield, and telling God that I was the only one left still holding on. I told God that I was letting go and it was up to God to make the decisions. I spoke to Grandpa in my head and told him it was ok to go. I remember feeling a physical sensation of that line being cut from me. I was told Grandpa died, that night…probably shortly after that prayer, although I don’t know for sure. It’s not something I’ve shared with really anyone.

So I have prayed for Dad. Prayers of all kinds, but one that I have said from day one is “God, if my Dad is going to suffer, if he is going to be in pain, I would rather you take him quickly from us than to have him endure it.” That’s a hard prayer. Who prays for possibly less time? But he’s still here so this is a good thing, right? That God still sees hope too?

 

 

 

It doesn’t matter how unfair I think this all is. It doesn’t matter that my heart is breaking. It doesn’t matter that the last picture we took together was of all of us with so much faith that this surgery would mean more time. None of that will change anything that is now.

When I see you laying there, you’re not you. If not for the machines moving your lungs, you are already dead. Yeah. I know that’s a horrible thought. But it’s my thought none the less.

I tell you every day to keep fighting. I’m trying to keep fighting  too. But damn it’s hard. I want to scream. I want to find someone to place blame on. Maybe you shouldn’t have had the surgery.I would have taken a few months over losing you now. I just wanted you to wake up.

So when you squeezed my hand after surgery. Was that you comforting me, and yourself? Or was that a cry for help? I don’t know.

Logan has faith that you are going to come back to us. I’m trying to be as optimistic. It’s hard. I want to curl up and just ignore the world, but I can’t.

I know I’m not the only one to go through this. I know other families have suffered like this. And yet it feels very lonely. When the night gets quiet and I’m left with nothing but the voices in my heads and my thoughts. And it FUCKING SUCKS!

I know that you would die before me. It’s the natural order. But I thought we had hope. Something to give us more time. I NEED YOU! I was going to talk to you about stuff and decided to wait and now it may be too late. I may never get that chance. And don’t tell me that my dad will hear me. I needed to have that conversation.

So God, I am begging you. I will give up days out of my own life if I had to bargain. Let my dad come back to us. Just give us a little more time. I love dancing with my dad. My mom met my dad dancing. Let us have one more dance.

 

 

I’m going to write this, while I still have hope because there is the possibility that at any moment that hope will be dashed.

Dad had an EEG to test for brain functionality. We are waiting on results. If his brain is highly compromised, this would be about the end of my story. Dad does not want to live that way. But for now I still have hope. Until I get that next call, I can dream that everything is possible. God willing, the test will come back positive and we will continue on but I’m painfully aware of the possibility of bad news.

Dad is scheduled to have 3 procedures tomorrow. To start the long term dialysis, to put in a tracheotomy, and put in a feeding tube. The doctors want us there after the procedures are done to talk to us. Makes me nervous that they want us all there. They also believe that dad may be having seizures. The EEG will hopefully give us some answers.

So for the moment I can live in my hope. I can live with the belief that dad will wake up and heal and be my dad again. But I’m also waiting for the other shoe to drop and it’s exhausting.

I’ve been wondering about sores in Dad’s mouth for the last few days. Today I asked about it and it sounds like he has thrush. Huh. But no one noticed until I said it. Small potatoes I guess but I’m still mad.

Dad has a blood clot in his arm. More meds for that. He had a CT scan today for brain clots. It’s possible that he has brain clots and has suffered a stroke. FUCK!

Here is my thought and it’s not kind nor is it pretty. What if dad is a turnip? He opens his eyes but does not blink. I have been wondering about his brain function for days. What if he’s a turnip? Alive, sure. Aware of the need to continue on, yes. But living within the confines of a pot, his brain, and not destined to be much more? FUCK!

Dad had this surgery to extend his life. Dad did this for all of us, but mostly mom and himself. Something that was supposed to go well, despite its complexity, was supposed to turn out ok. And nothing has been ok.

Ken and I are getting married. On Monday we will get the wedding license so it’s on hand. I feel horrible because I know his mom wants to be there but if things go south, I won’t have her in ICU without my mom and the hospital permission. I don’t want her to hate me for that. I need my dad to be there. I need him to be awake. But both of those things are very tenuous. I am praying that we have some brighter days ahead, but I just don’t know. Sorry Mama Weed. I hope you can understand.

This shit sucks. I guess nothing is for certain in this life. People die all the time, for numerous reasons. People have hangnails removed and get an infection that takes their life. People have surgery to extend their life and they end up a turnip.

I don’t like turnips. I don’t like thinking of Dad caught in his own body and unable to do anything. I have always had the idea that people with brain injury or illness are fully aware. They are stuck withing their own bodies that won’t function for them, but they are there.

I’ve seen people with advanced dementia have moments of clarity, usually right before death. Where they can recall their past, including their recent past. That tells me that the brain is working, even if the body is not. This is also a horrible thought for me. That my dad is trapped in there without a way out to where we are.

Please don’t let him be a turnip. Please let him come back to us.

Hey Dad. You’ve made it another day, which means another day to fight this. So much I want to say to you. Mom and Rob want to be very cautious on how much we say to you so you don’t get frustrated. That’s very hard for me. If it was me, I would want to know what is going on. The not knowing would upset me. On the other hand, I understand that not saying anything has benefits. But I will let that go for now,so I don’t drive myself crazy.

Logan is worried about you. He asked me how you would learn to breathe out of the correct nostril with only one lung.  His thought was that each nostril went to one lung. I explained how all that works but I find it interesting how his mind works. He wants to see you badly. Mom suggested I take video and picture to prepare him,which I did. I talked with the kid support person at the hospital. They’re very supportive of him visiting. They have put toys in your room for Logan. He will get to color your window for you. Actually, I really want to do that too! Friday Daimion will get to see you. Either Saturday or Sunday I will bring both boys.

I’m getting married! you don’t know that yet. I wanted to tell you today but wasn’t sure you were truly seeing me. So I will wait. Ken and I are prepared to have the ceremony any time. Rob will officiate. Most likely it will be in your room. But Rob had a point, that we can wait just a little bit to try and make sure you are truly present. Damn Rob for being all facts and figures! But he’s right. I would much rather you be cognizant of what is going on. Ken and I decided that life is too short and tenuous. We’ve talked about it for some time. The “perfect” wedding for us. But the rings, the clothes, the llamas and wedding clowns (just kidding – sport of) don’t mean anything. What truly does mean something is our dedication to each other and having our family there. Ken wants us both to have the same last name, but I don’t want to give up Gilchrist.  So after some media polls and talking to family, I think we’ve settled on the last name Gilchrist-Overlock. We will both take that name.

This has been very difficult. I can see the sores in your mouth. I put chap stick on you but your mouth is so raw. I can’t fix this. But I am here to love you.

You are my daddy. My hero. My friend. And while we had a serious scare, every day is a new day to fight. I am doing what I can to be supportive. I sometimes fail. I can only handle so much. It’s hard. And I worry that you have thoughts and ideas and questions but you’re unable to communicate. And I don’t know what to do with that.

Anyway, I love you. And I need you. We all do. Just keep fighting!

Didn’t sleep well. Got maybe 3 hours of broken sleep. Kept waking up and checking to make sure I didn’t miss a phone call. I’m off to the hospital again shortly. Picking up something to eat on the way. Maybe I’ll come home later for some rest.

But no midnight calls means that we hopefully have more time for dad to fight his way back. I know he’s not ready to go and none of us are ready for him to leave.

Stay strong Daddy! Logan has another video for you and some poems he wants me to read.