It has been yet another long, emotional, exhausting day. Dad was worse today in some ways, very restless and unable to communicate what was wrong. I think he was anxious from all the change in his life, the warp speed at which his life is spinning out of his control. I cannot fathom how it must feel to be so helpless, and to be facing the end of your life. I was finally able to leave the hospital about 2 this afternoon, and he was sleeping.

I met with Carol from Kansas City Hospice as well as the KU Coventry Rep, and I think we have a plan mostly worked out. Bringing Dad home is most definitely our only option for now, and it's a decision Mom and I feel very comfortable with. We will be able to get KC Hospice to help a few days a week, and we're hoping to hire someone here and there. We have a lot to learn about his care, and I'm a little frightened of some of it, but I'm sure that God will guide me and give me strength. And when or if it gets to be too much or he is just too sick to be home, we will have the option of him spending his final days or weeks at Hospice House. I am relieved that we won't be alone in this, that we have professionals guiding us.

Next week will be rough: my husband has to go out of town for work, and Dad will be coming home Wednesday or Thursday. I will not be shy to say I could use help with the kids next week, particularly with Addie. Anyone who would want to pick her up from kindergarten at Highlands and drop her off at KU, I would be indebted to. I think I have Wednesday covered (God Bless Sarah Reaves, Addie's favorite person in the world!) and they're out of school Tuesday, and I have a Mom who has volunteered to take Henry to soccer Tuesday evening. (thank you Nicole!) I enjoyed a fabulous meal from Diana Patterson - my husband said to me "I think you have a contender in the cooking department" and I can't believe how much better I feel after a real meal. We have a few meals coming next week, and I am deeply grateful and touched by their generosity. Thank you to those who have emailed me or messaged me on Facebook. I try to respond to everyone, but if you were overlooked, it was not intentional! Thank you for your prayers, keep the faith. We all live in hope of the Resurrection.

Three years and one month ago, I leaned over her mother's bedside and whispered to her not to worry, I would look after her children. I have remembered that promise when her Dad called and asked me to take one of them to soccer, or ballet, or football. I have tried to honor her by being a watchful eye, having an 'open door policy' with them. In those three years, I never imagined that her legacy would lead her child to look out for me.

The middle daughter is 13 going on infinity. She is far more mature than her peers. When I told her about Dad, we had a frank talk about death and dying. We talked about her Mom and what it was like at the End. She went home, then came back a few minutes later. "I want to help you after school, my Dad said it's okay. I can help you every day." I was speechless. Where gown ups cannot look me in the eye, or don't know what to say, this young girl, hardly a woman, knew what she should do. I was moved to tears, beyond grateful. All I can think is how proud her mother would be of the incredible person she has become. Life is a circle. There is always hope. Her mom lives on through her, the daughter. Life without end.

'Til human voices wake us, and we drown'

I brought two of Dad's poetry books from college to the hospital, old, worn copies of Eliot and Yeats. The have his scribbled chicken scrawl signature inside, and his notes in the margins. I had hoped to read to him some of his favorites, but he has lost all interest in the things he used to enjoy. Now I carry them with me like talismans: bits of my father's former self, bound in faded grey paper.

We are dealing with a nightmare right now. Not just my father dying, that is bad enough, but the difficult task of trying to not only find a suitable place for him to live out his days, but to get Medicaid to cover him. My parents are not wealthy. They live on Social Security and Disability. My Mom has managed to save a small sum - 30,000 dollars, not a fortune. And this is money to last her the rest of her life. She will not be getting any large sums of cash her way. No stocks, no bonds, no pension, no retirement. Nothing. And Medicaid deems that she has too much money. She has to 'spend down' for Dad to qualify. This could very well wipe her out, and they may deny coverage in the end, which will probably leave us no choice but to bring my father home. None of us have any nursing training. We cannot afford round the clock care. If you could stand on the outside and look at what we're up against, you would probably think it must be a story from a third world country, not here in the U.S..

But here we are, facing insurmountable odds. We are not alone. There are a million stories just like ours, we are just a million and one. I am outraged that at the end of my Dad's life, we are unable to simply provide him comfort and the best care possible, to just enjoy what we have left. No, we have to fight and scream and yell. 'All sound and fury, signifying nothing' I feel like we're drowning, floating far away. Our little family clings to one another as we hope for salvation, but it won't come.

My Father was a productive member of this planet. He was a champion of the enviornment before it was fashionable. He has hiked remote places, been a true adventurer. He led scout troops of inner city boys that no one else would take on. He helped gather gifts and food for Christmas families, and helped deliver them to homes so poor it would take your breath away. He worked hard, his entire life, and while we never had much, he always believed in giving back. He has given so much, and this is the thanks he gets. I am angry. I am disgusted. Please pass my father's story along, maybe if enough people are outraged, change will come. Next time, it could be your father, your mother, your spouse. Don't let this happen to anyone else.

"Letting the days go by, water flowing underground"

I move in slow automatic pilot, not sleeping and going through the motions of the day, time seems to slow down at the hospital, I never have any sense of what time of day it is. When I get home, it seems to speed up as I try to fit in everything I have to get done. I drove in early this morning with the sunrise illuminating the clouds pink and cars and people buzzing by me in rush hour traffic, the bustle of morning, the mundane droning on of life.

Dad is the same today, still out of it, but awake. We don't know anything more, waiting on the doctors to do rounds and the social worker to come in.

"He felt he's been left on a desolate shore, to a future he desperately wanted to flee

The first thing I woke up to yesterday morning was a text from my brother, who took the early shift with Dad. It had a photo of Dad sitting up in bed eating, and the message 'looks better!' It was a relief to walk in the room with Addie and hear him weakly call her name. She crawled up in bed with him and told him about her weekend. It was a gift to have him lucid.

His nurse said he had been in coma, which I had not realized. He is awake now, but very, very weak. Sitting up tires him out, he still 'wanders' in his mind. Mornings are best, and as the day wears on, he gets more and more exhausted and sleeps a lot. There are no real answers to why he went downhill so quickly. The best guess is just that his body is very weak from seventeen months of fighting, and he had just started radiation in conjunction with chemo. and I think it was just too much for his poor body to take. He'll be in KU for a few more days, then in an assisted care facility.

I am angry today because the facility he'll wind up in will not be of our choosing, and will most likely be a certified craphole. There are those of you out there who think our healthcare system is fine, and that healthcare is merely a privilege for those who can afford it. I pray none of you find yourselves in this position: with a terminally ill parent whom you cannot care for at home, you cannot afford to pay for care in a 'good' facility, and whose insurance barely covers the necessities. It is a terrible position to be in. Dad and I sat and listened to President Obama's speech today, and we both wept at the end, and I knew he was thinking about his own predicament, and how no help or reform will come for him. I am outraged at what a self absorbed society we have become. No one looks beyond their own needs or desires. All I can hope for is a new generation of children that are raised to think about the needs of others, and to be taught that public service is a necessity, not just something to do and put on your college transcript.

You'll pardon my bitterness. I am sleep deprived and have not eaten much since Dad was admitted. This is a really awful road to walk, long and steep, and we are but a tiny family trying to shoulder this huge responsibility. We can only take this a day at a time, and try to be there for Dad as much as we can.

That night, he dreamed of the ship in the world
It would carry his father and he
To a place they could never be found
To a place far away from this town,
A Newcastle ship without coals
They would sail to the island of souls.

"They call me on and on across the universe"

Dad changed drastically from yesterday. I wish I had known when I left last night that he wouldn't know me when I came in today. Maybe I would have talked about more important things other than where we took the kids for dinner. Maybe I would have told him how very much I love him and honored I have been to have him as my Father. Maybe I would have told him how brilliant a writer he was, what an amazing photographer, how sharp a mind, but I didn't. That's the thing about life, you can't see down the pike. You never know when you're going to have to say goodbye. I like to think that his last lucid moments with me were comforting, a moment of mundane chatter that injected normalcy into an otherwise absurd and terrible situation.

He was so awful as I sat there this morning, breathing labored, skin cold to the touch, I had to ask the nurse 'Is he actively dying?' Because I have seen this before. I know what it looks like. She assured me that death was not imminent, but that he is a very sick man. We met with Dr. Gadi (when I heard his name out loud, I thought it was Gotti, and I was worried for a minute) who, like all the doctors and nurses we have seen at KU, was amazing, informative, thorough, and sensitive. He decided to do a head MRI with dad to see if perhaps the brain metasis have grown, or maybe there's a new bleed. He confirmed what we already knew: we are reaching the End. Mom asked 'could he die today?' and Dr. Gadi replied 'Yes, he could.' We went over our DNR request. We want no extreme measures. They are doing their best to keep him comfortable, which means fairly heavy sedation. When he's not sedated, he's agitated and combative. He has no idea where he is or who we are. If my Dad could step outside himself and see the state he's in, I know he's be horrified. This is not how I pictured his end of life. This is not what he wanted. And while I know that people get very uncomfortable talking about death and dying, the reality is I don't want my Dad living if this is his quality of life. It's horrific. He is not my Dad: he's a shell. I have lost him. I said to a nurse 'Unless you can make him lucid and walk, I don't want him to go on.'

This is the ugly side of cancer, the truly heinous side. It has robbed my Dad of his beautiful mind, his intellect, and his memory. The core of who is is is gone. I held his hand and peered into his Paul-Newman-blue eyes and said 'Dad, who am I ? What's my name?' And the eyes were blank, glassy. Mom held up a photo of the kids, 'Scott, who are these kids? Do you remember?' Nothing. That was like having my soul ripped out. My kids were his pride and joy. They were his world.

We are in the dark place now. We wait now for release, for my sweet Father to be granted safe and peaceful passage to the Other Side. I pray for just one more moment of lucidity, for his eyes to fix on me and know who I am.

"But man, I wish I had a hand to hold..."

I woke up long before the alarm this morning, watching the dawn slowly creep across the darkness. I laid there in the grey morning light. Everything was different, again. This was different from that feeling when he was first diagnosed - the lurching, shocking pain in my soul, the knowledge that my Dad wouldn't survive this. I've had 17 months to adjust to that concept, and as you all know, we've been in somewhat of a holding pattern. Dad has been failing a little bit each day, but still holding his own, still responding to treatment.

Yesterday, he went to radiation as usual, he used the walker to get down the steps, he seemed as normal as he has been lately. However, something drastic changed, in a matter of a few hours of him getting home. Mom called me around 5:30 (I was bringing dinner) 'Are you on your way? He can't get out of the chair, I don't think I can get him up on my own.' I hurriedly finished making dinner and raced over. By the time I got there, she had gotten her next door neighbors to come help get him out of the chair and onto the toilet. It took two big, young, strong guys to hoist him up - he could not support any weight on his feet- and even for them, it took supreme effort to move him. Dad seemed disoriented, slightly incoherent, and terribly scared. He was having a lot of pain in his back and chest and couldn't seem to get comfortable. He quietly said 'I think you'd better call an ambulance.'

We had him transported to KU Med, and when we finally got back to see him, he looked terrible. The worst I'd seen him, ever. Pale, glassy eyed, mouth slack, totally unaware of his surroundings. Awful. He received excellent care, they were able to get his heart rate under control, and started running tests right away. They weren't able to pinpoint any real reason why he turned so quickly, no obvious signs of infection. He was admitted, and due to population overflow (full capacity at KU is in the 420s, and they were in the 480s) he was admitted to the Burn ICU. I can't even get into how surreal that experience is, that unit is as secure as Fort Knox and probably the most sterile place I've ever been in. It's been a frustrating day, trying to get someone from Oncology to come see him and get him down on that floor, because as good as those nurses are, they're not oncology nurses. When I left at 4:30, they had a bed ordered and were working on getting that in motion.

We met with Palliative Care, and that was hard. I was grateful for Mary from St. Michael's being there, she was an absolute rock and source of great calm comfort. The doctor tried to get Dad to talk about how he was feeling about being so sick, and about dying, and she said 'Are you scared about leaving the people you love?' Mom and I were crying, and he gestured at us, and with his usual wry humor 'Well, not those two, but her kids are pretty cute.' I was laughing and crying at that point. They talked about pain management, and we expressed concern about his restlessness and agitation. He cannot sit still in bed, won't let himself sleep, tries to pull out his IVs and catheter, tried to get out of bed. Even tonight, after ativan, dilaudid, and vicodin, he still couldn't settle down. He didn't sleep more than a few minutes all day, I know he has to be exhausted.

He was finally put on the Oncology Floor about seven this evening. It's nice to be off the burn unit and on a less secure floor. My hands felt like they were going to shrivel up if I washed them one more time. We're taking this a day at a time, we don't know how long Dad will be there, but it's safe to say that unless he makes a drastic, miraculous turn around (which I am not ruling out, this is my Dad we're talking about. If there's one thing I've learned in all this: don't ever count him out.) he probably won't be coming home.

I drove back to the hospital tonight as the day turned to night, and sat in his room, looking out the window at the purple sky. Everything is different now, there's no turning back from the change that's coming. I can't fight the tide. Dad thrashes in bed a fights sleep because he's afraid. Because he's fighting against the inevitable. And while I admire his strength and fortitude, I hope that when the end is finally here, that he will know that it's time to stop swimming against the tide, and to just let the waves carry him home.

The moon is nowhere almost time for the sun
The voice of the waves sound anciently young
I'm a prisoner of freedom ten toes in the sand
And man, I wish I had a hand to hold

I'm in the habit of being alone
I try hard to break it I can't on my own

I'm glad no one's here just me by the sea
I'm glad no one's here to mess it up for me
I'm glad no one's here just me by the sea

But man I wish I had a hand to hold