"I'm out of step and closing down"

Grief is a tricky, fickle bitch. Just when you think you're okay, you're over it, you get sideswiped.

My kids are a mess, Addie wants Apaa back 'right now!' - she has no concept of death as a forever thing. Henry cries, he acts out, he has trouble sleeping. They both have nightmares. I find myself outraged that there are still people I know - in my lives, that I see on a regular basis- that have never once said 'I'm sorry', or 'How are things'. Zero acknowledgment of the difficult ordeal we all went through. So many want to think that it's over. I should be moving on. And believe me, I'm trying. But this has changed me, in a deep, profound way, and I'll never be the same.

"You have been here and you are everything"

(Cross posted from my private blog)

Well, I've been over at the Cancer blog, and if you know me at all, you've been reading that. I now feel very blog-less, as Dad is gone, and this blog was very centered on workout routines and food obsessions. I am somewhere in between the two, both nowhere and everywhere. I am still very much consumed with what the last 18 months have been to our family, and the ripples are still ebbing out farther away from the epicenter of it all. The rest of the world is in full stride, and here I struggle to get in step. I stumble, trip, sometimes stop all together. I want so desperately to find my normal again. What 'normal' is, continues to evolve for all of us. I still don't sleep, barely eat. I am overwhelmed with my own grief, and yet I have to deal with the grief of my children and mother. I feel compelled to be the strong one, yet inside, I am breaking to pieces.

If I've learned anything throughout this, it's that life is fleeting and fragile, and it shouldn't be wasted worrying about bullshit. I've learned that there are people that step up to the plate when there's tragedy, and then there are those who won't. For whatever reasons, they cannot be there for you. I have been appalled and angry at individuals I thought were my friends, but I have come to a form of acceptance. I pity those who can't trudge through with someone they care about. I find it sad that they will never truly experience the full range of emotion life can bring. It's not just about the sweetness and joy; it's about the sadness, bitterness, and grief. Sharing with someone in their darkest hours is deeply intimate, and I will forever feel a connectedness to those who reached out to me while my father lay dying.

I no longer fear death. As a child, it terrified me. I could not imagine anything worse than my parents dying, or me dying. I have found serene peace in all of this. Death will come for me, someday, I hope not too soon, but when it does, all I pray for is a beautiful death. It is a journey, a pathway to the cosmos, and I feel immensely and profoundly honored that I could walk that path with Dad. I couldn't follow him all the way, but I stood on the shore and waved goodbye, and watched him drift away. What greater honor is there than that?

I don't know what this blog or the other one will become. I don't know where I'll post or what I'll post about. But I'm still here.

All you hear is time stand still in travel
And feel such peace and absolute
The stillness still that doesn't end
But slowly drifts into sleep
The greatest thing you've ever seen
And they're there for you
For you alone you are the everything
For you alone you are the everything

Scott Hoober, 66, of Prairie Village, KS, passed away Thursday, October 1, 2009, after 18 months of giving lung cancer hell. He was born March 24, 1943 in Washington D.C., to Daniel and Nora Hoober. He attended the University of Illinois and graduated with a degree in photojournalism in 1965. From there, Scott took his first job at the Beloit Daily News, in Beloit Wisconsin, where he met his wife-to-be, Penny. They were married on August 27, 1968, bonded by a love of news and politics, even honeymooning in Chicago during the riots of the Democratic National Convention.

Scott contributed his considerable writing talents to several papers in the Midwest before settling in Kansas and shifting his focus to Media and Public Relations, most notably as Media Liaison for the KCMO Police Department. Scott became a familiar face on both local and national news in the late ‘70s and early ‘80s, particularly during the Flood of 1977. He went on to work for the Federal Reserve Bank of Kansas City, and then ventured on to open his own company, Hoober and Associates.

In addition to his love of writing, Scott held a lifelong passion for photography, a tangible illustration of his ability to be a passive observer to the world around him. Scott was a champion of the environment long before it was in vogue, volunteering for the Kanza Chapter of Sierra Club, and hiking throughout remote areas of the US and Canada. He was also a Boy Scout and member of the Tribe of Mic-O-Say, and he was Troop Leader for several groups of at risk boys. Scott believed in public service and was a patron of the arts, giving his time to the Heart of America Shakespeare Festival, the Fringe Festival, and the local Blues and Jazz Club. Scott was also a member of IRES and IABC, and cherished the friendships he had made through all his organizations. His friends will remember his quick wit and vast knowledge of current events as well as history.

Whether it was hiking a challenging trail, dealing with an intellectual dilemma, or facing a terminal diagnosis, Scott faced it all with grit and determination rarely seen in men half his age. A lifelong non-smoker, Scott refused to let metastatic lung cancer get him down, and continued to make the best of life throughout his 18 month fight. He defied all odds in his survival, due to his optimism and the caring and determination of Dr. Karen Kelly and Kizzy Allen, RN, of the KU Cancer Center. It was Scott’s final wish to have his body donated to the Kansas University Medical School, in hopes that he could help others. Scott is survived by his wife, Penny Hoober, children, Steven (Alison) Hoober and Christine Hoober (Bryan Sowell), grandchildren, Tyler, Henry, and Addie, sister, Geri Maskell, and aunt, Charlotte (Chickie) Stone, as well as many cousins, nieces, and nephews. Memorial Service will be held Saturday, October 17, 2009 at one in the afternoon, at Saint Michael and All Angels Episcopal Church, 6630 Nall Ave., Mission Kansas. In lieu of flowers, the family requests that donations be made in Scott’s name to Kansas City Hospice and Palliative Care. Scott’s family is forever grateful for the care and respect given to Scott in his final days at Hospice House.

"Here comes the flood. We will say goodbye to flesh and blood."

I was fully prepared for Dad to die. I had studied the process, all the signs. I knew what to expect, knew what it would look like. I had focused my time up until then on caring for him; I threw myself into it head on, then I could avoid the unavoidable. Everyone says that death is shocking. Even when it's expected, they'll say, you'll be surprised. His death came as no surprise. It didn't take my breath away. It humbled me, saddened me, but it was the expected path we were all on.

I was not prepared for how I would feel after. I had thought I'd feel pain, I had thought I would cry for days and then wake up a few days later ready to proceed with life. I don't feel like I'm grieving, I just feel.... lost. Empty. I am a television set turned to static, all white noise and confusion. There is a huge, gaping hole in my life where Dad once was, and nothing has yet filled it in. My father was a big personality, he adored being the center of attention, and most family gatherings, he was. I still find myself having absentminded thoughts about picking up a pastry from Andre's for him, or rummaging through the dollar bin of dvds to see if there were any movies he'd like. Then I feel like I've been hit in the stomach with the realization that he is really, truly gone. And even though I was there and witnessed it, I can't believe this huge presence is gone.

Dad's Memorial/Funeral/whatever the hell you want to call it is set for Saturday, October 17th at one in the afternoon, at St. Michael and All Angels. I'm working on the obituary, it will be posted in the KC Star probably Wednesday or Thursday of that week. Thank you all for your e-mails, cards, phone calls, and facebook messages (I love technology). They are all cherished and appreciated.

When the flood calls
You have no home, you have no walls
In the thunder crash
You're a thousand minds, within a flash
Don't be afraid to cry at what you see
The actors gone, there's only you and me
And if we break before the dawn, they'll
use up what we used to be.

"Do you know what? I love you better now"

“We cannot mingle with the splendors we see. But all the leaves of the New Testament are rustling with the rumor that it will not always be so . . . The door on which we have been knocking all our lives will open at last.”

—C.S. Lewis

Dad died peacefully at 2:05 pm with me and Mom at his side, after nearly 18 months battling cancer in his lungs, brain, and spine. He fought long and hard, as brave as any soldier, and we fought right along with him.

Dad took a distinct turn this morning, his no longer tried to open his eyes when we talked to him, he wouldn't squeeze our hands. Steven had brought our home movies, and we played those and reminisced as we took turns sitting by his side. I watched the images of us as babies and toddlers, playing with my young handsome Dad and adorable cheerleader Mom, and thought of all the people on it no longer with us: grandparents, aunts, uncles, and could feel them all waiting beyond the veil. His breathing had become fast and followed an unusual pattern of building to a raspy crescendo before slowing to nothing. This went on for several hours. Around noon, I noticed his hands and feet were getting cold. His breathing began to slow down, he was still and peaceful. They called his breathing 'agonized', but it was actually very rhythmic and slow. We knew it was close. The end came swiftly, quietly. His breathing simply got softer and softer, and just stopped. Mom knew. 'That's it.' I got a nurse, who confirmed he had passed on, and we hugged him and cried. He is free of his broken body. He passed over with grace and dignity, and it was beautiful. I feel fortunate to have been there with him.

Thank you all for letting me share this journey with you. Thank you for the prayers, notes of kindness and encouragement, meals, childcare... I can never thank you enough. A special, heartfelt thank you to Fr. Gar, your timing today was truly guided by the hand of God. It was a blessing to have you walk in mere minutes after he passed. Details of a Memorial will be planned at a later date, if you wish to know when, please email me and let me know.

I am falling
Like a stone,
Like a storm,
Being born again
Into the sweet morning fog.
Dyou know what?
I love you better now.

"Listen to me now, I need to let you know, you don't have to go it alone"

If you were to step outside tonight into the cold autumn air, you'd be able to feel it. It's palpable. My Father is so close, he is right at the threshold between this world and the next. His breathing is not as ragged, he is not gasping anymore. There is not much apnea, just slow, quiet, barely perceptible breaths. His hands are graying, mottling. He can no longer swallow, he is unresponsive to all efforts to engage him. He is beginning the transition from life to death, death to eternal life. And I do believe that. What I am going through with my father is painful, and difficult, but it is also sacred, holy time. I see a peace about him tonight that I have never seen in him before, and I know he is ready.

I walked to Mom and Dad's house last night, knowing I'd spend the night, sure that he would die in the middle of the night. I cut down the path along the Prairie Village Post Office, it was pitch black and the vines have overgrown it a bit. I can't quite explain it, but I didn't feel alone. Someone walked with me, matching my pace. God, Angels, my imagination, I can't say. But I can tell you I felt a presence, and felt comforted. There was a question in the air last night, a whisper that was unspoken, but I heard it nonetheless.

"Are you ready?"

I thought, yes, I am. I am ready. I will cry alone and be strong for my Father. I will be with him and bear witness to his transformation. I wipe his mouth, rub his feet, hold his hand and tell him I love him, that he was a good father, that it was an honor to know him. I do all this because I know these are the last things I can do for him. My last acts as his daughter.

I have so much I'd like to tell you about, the wild host of characters I have met along this journey up until now, but those stories will have to wait for now. I can't focus long enough to write, my soul and spirit are curled up with his, waiting.

Thank you, my good friends. God bless you all. I'll see you all on the other side.

Where are we now?
I've got to let you know
A house still doesn't make a home
Don't leave me here alone...

And it's you when I look in the mirror
And it's you that makes it hard to let go
Sometimes you can't make it on your own
Sometimes you can't make it
The best you can do is to fake it
Sometimes you can't make it on your own

I was relieved to be done with my 10 hour shift at dad's bedside. Taking an evening run to the liquor store (I'm out of bourbon), when I nearly hit a dog. A young boxer, in the middle of Tomahawk, looking terrified and confused. As usual, without thinking of what I'm going to do with this dog, pull over and fling open my van door to coax her in. In she went, home I went, only to arrive to the eye rolls of my husband, 'You know, you can't save every dog.' But I can't just drive by an animal in need. I can't. It's not in my nature to think it's not my problem. So I got her in the back yard - but only after discovering that she had somehow gotten poop on her collar. Eww. She had no tags, just a collar and an end of a broken lead. I left her in the backyard and went back to the liquor store (I was still out of bourbon), all while trying to form a plan. I knew animal control didn't work evenings. She couldn't stay out all night. Oh my god, my husband is going to kill me. Got back home, drink of bourbon, call PV Police dispatch. Explain the situation. She asks 'Wait, what kind of dog?' I tell her a boxer. "With a red collar?" Yes, yes, red collar. She had the owners on the other line. At the same moment I called. If that's not fate, I don't know what is. God saw I needed my faith renewed, I needed something good, dammit. The owner was at my house in a few minutes, kids in the car and in total disbelief that I had taken her dog home. She kept saying 'I can't thank you enough' , and I assured her it was my pleasure. And it was. It made my heart swell to know I'd done something good for a total stranger, one I'll most likely never see again.

It was a rough day with dad, he's failing more, eating and drinking less. Mom has a bad GI infection and is very sick. Things are bad around here, But I continue to have faith. I believe God is present with me and guiding me, even through my anger and emotional breakdowns.

Dad has changed dranatically from yesterday to today. He is sleeping most of the time, not eating much, rarely making sense. I think we are closer to death than any of us realized a few days ago. His spirit is hunkering down deep within, his body is conserving energy for the end. And so we wait. I hold vigil by his bed. I wait to feel the presence of God. I am ever watchful, hopeful of the resurrection.

I find myself repeating the same phrases over and over throughout the day. The same motions, the same gestures. My care for my father mirrors and mimics my care for my children. Straightening of sheets and blankets, warm enough? Too cold? Cleaning, wiping, teeth brushing. Food preparation, cutting up of meats, bread cut into triangles. Watching, worrying, waiting. The anxiety of a frightened child at night, a confused father during the day. I go through it all as Caregiver and Mother to all of them, all while engulfed in huge waves of feeling overwhelmed. I am at times both amazed at what I can do, and afraid it's not enough.

Hospice has been a good resource, and we have been blessed with wonderful nurses, but they don't do everything. I think this is a misconception a lot of people have. When I say how hard it is, how much work, they always say 'don't you have hospice?' As if they're magical fairies and elves that live at your house and whisk away all traces of bodily function and disease. And while they are very helpful, they visit about four times a week, for about an hour each time. That's not a lot of time. All the rest is us: me, mom, and Steven. We are all doing our very best, and maintaining a sense of humor about all of this, which is really amazing, considering. Dad is up and down, still bad days and better days, nearly bedridden but still able to get up for short periods of time with a lot of help. We continue to plug along. Thank you for your prayers.

There are some things I just cannot write about here: today was one of those things. Suffice it to say, it was a terrible day, and I have had to do and witness things I never thought I'd have to. I can say that profound changes are happening in all of us as Dad enters into active dying. I can't say yet what I'll be on the other side of this. I hope I'll be stronger, more compassionate. I hope that the bitterness and anger will fade in time. I continue to have hope, because that doesn't always mean a perfect life or survival for my dad. Hope can take many forms, and in this case, it's that we will all come out of this better people than we were before.

Pray for all of us

"I'm wide awake, I'm not sleeping'

Last night, I dreamed I was camping with my Dad at Perry Lake. He was as I remember him, still tall, still energetic and vibrant, and we were looking for firewood as the sun was setting. We separated for awhile, and I was by myself, along the shores of the lake, watching the sun set. I went to find Dad, and he was back at the campsite, but laying on the ground, unable to move and looking like he does now. I was all alone, and I cried and yelled for someone to come help me, but there was no one. No one.

We have him home now, and we are trying to get the hang of things and establish a routine. I have learned about basic care for someone who cannot care for themselves. Mom says how well I do, how capable I am, but what she doesn't know is how terrified I am. Everyday brings new challenges, and I pray every morning that I'll have the strength and grace to deal with it all.

I am woefully behind on my thank you notes, so I need to give a shout-out to the fabulous Krissie Wiggins, for taking on my children twice in the space of two days - you're either a saint, or a glutton for punishment! I so appreciate it, really. Thank you to those of you from St. Michael's and Highlands who have offered to come over and sit with Dad, and thanks to Lisa Welker (RN) for stopping by to check on us yesterday. And lastly, my dear friend (and former babysitter) Joy Baker. She has unfortunately walked this path with her Mom six years ago, and she has been an absolute rock. I'm so grateful for her being in my life right now! Thank you all for your prayers - and meals! They are much appreciated.

If I could through myself
Set your spirit free
I'd lead your heart away
See you break, break away
Into the light
And to the day

To let it go
And so to fade away
To let it go
And so fade away

I'm wide awake
I'm wide awake
Wide awake
I'm not sleeping

" I want to go to dinner. Let's go out."

"Out? Oh, I don't think so, Dad."

"I feel fine, let's go somewhere on 39th street."

"ummmm.... I don't think that's a good idea."

"Then take me to Prague."

"What?"

"Let's go to Prague."

"You want me to take you to Czechoslovakia?"

"Yes."

"Why would we go there?"

"Why not?"

Our lives continue into the realm of the bizarre and absurd. My Father floats in and out of lucidity, with some days being better and others being much, much worse. Sometimes he gets angry and mean, and I have to walk out of the room for a few minutes. I know when I come back in, he will have no memory of anything he said. I know this is all normal for his stage of life and looming death: it doesn't make it any easier. It doesn't take away the pain or sadness it brings.

My faith is being challenged and tested lately. More so than usual. I have found myself mediating on the humanness of Jesus, he was born a man, he was a little boy with a family before he became the Saviour of mankind. The Bible sort of skips over 30 years of his life. As I drove to the hospital the other day, I was listening to the soundtrack to "The Last Temptation of Christ" - which is an amazing movie and I never did understand the uproar over it. It imagines Christ if he had walked away from his destiny. If he had married, had children, if he had not willingly been sacrificed. In the end, he realizes he has made a huge mistake, he wants to die so the rest of us can live. He wakes up on the cross; it has all been a dream he had as he suffered. He cries out 'It is Accomplished!' and dies. To me, it is one of the most moving portrayals - to worship his divinity, we need to understand his humanity. Do we presume to think he didn't struggle? Have doubts? Wasn't he scared? But despite this, he knew his destiny, he knew what had to be done.

I passed through the plaza as I listened to the music from that scene- one of the most moving a beautiful pieces of music I have heard- and the church bells were pealing almost in time. I wept for my Father, for me, for all of us. I tell people: "I'm not scared of death, I'm scared of dying." Death is as natural and normal as birth, and every bit as painful, traumatic, and life-changing. I can understand Dad's need to run away, the wild thought we all get of just getting in a car and leaving. I remember thinking that when the fist labor pain hit with Tyler. I irrationally wanted to get in my car and go home 'changed my mind, not doing this.'

I know when the moment comes, and Dad makes his transition from life to death, from this mortal coil to a spiritual existence in the cosmos, peace will come, for all of us. None of us want to die, but we all will. We all must keep the faith, and live our lives in hope of resurrection.

Dad comes home tomorrow for the last time. I am terrified of the huge undertaking, but this is the last thing I can do for him. This is what it means to be part of a family, we care for those we love. Dad would love visitors, and I would love company while I sit with him. Please don't feel shy or weird about calling or coming over. Thank you all for your prayers all these long months.

'Nothing could mean anything at all'

I curled up in bed with Tyler tonight, he was restless and complained of a stomachache, but as a good mama, I knew it was something more than that.

"Are you upset about Apaa?"

He didn't answer, but even in the darkness I could see the tears sliding down his cheeks. I got a cold cloth and gently wiped his face. I struggled to find words that would matter, that he would remember when he was grown and he was going through this with me, words that maybe he would remember and repeat to his own children:

"I know it's hard, and it's okay to cry. It's okay to feel sad. But death is normal, we all die someday. I could die tomorrow, there are no guarantees I will live to be an old lady. But if I die, Tyler, you have to know that my love for you will still be here. My love will never leave you, and the same goes for Apaa. We all have to still live our lives and be happy, because life is short, rediculously, crazily short, and my most fervent wish for you and your siblings is to get out there and LIVE your lives to the fullest. Tyler, I used to wonder what God had in store with me and you when I got pregnant. I was only 22 and so very scared and unprepared. I knew there was a plan, I knew you would be a fabulous human being, but I also felt there was more, a higher purpose to the strife and turmoil that went with being an unwed mother in 1995. And do you see now how lucky you are? You have a close relationship with all four of your grandparents, not many people can say that. My parents were young enough to really enjoy you and watch you grow up, and someday soon you will read all the things Apaa wrote about you, and you will know that he adores you. Henry will have some memories of my Dad, Addie even fewer, but YOU, my dear boy, will have a treasure trove. You will be the ones to tell them stories about Apaa and how much he loved them. That is a wonderful thing. My Dad got almost 14 years with his first born grandson, and I'm grateful for that. It's okay to cry, because this is sad. Trust me, I cry all the time. I'm going to miss him like hell. But we will see him again. "

Everything alive must die
Every building built to the sky will fall
Don't try to tell me my
Everlasting love is a lie

Everlasting everything
Oh nothing could mean anything at all

Every wave that hits the shore
Every book that I adore
Gone like a circus, gone like a troubadour
Everlasting love for ever more

Oh I know this might sound sad
But everything goes both good and the bad
It all adds up and you should be glad
Everlasting love is all you have

'No straws to grab, just the rushing wind"

"What do I do after this?"

"After what, Dad?"

"After I leave here."

"Well, you come home and Mom, Steven and I will take care of you."

"You'll feed me?"

"Yes, of course."

"Will I get any more treatment?"

"No, Dad, no more treatment. You were getting new metastasis in the spine while you were getting this chemo, so it's not working. We're out of options."

"So, what, I have days left?"

"No, Dad, look at you, you're talking, you're eating, you've probably got a month or two. We don't know. The doctors don't know."

We both cried after that. What he doesn't realize it that I've had this conversation with him several times. He can't remember each day. I'm stuck in preverbal 'Groundhog Day' moment with him every day. The same conversation, the same room, the same outcome. I don't believe in sparing feelings in a situation as dire as this. I wouldn't want someone to lie to me and tell me I'm going to get better. I wouldn't want anyone treating me like I'm a child and can't handle the reality. I'm honest with my Dad because he deserves it. He has the right to know that he's dying.

Thank you to Christine Schipfer and Sandy Edmunds for coordinating meals, it eases a lot of stress for us. I appreciate all the phone calls and e-mails of prayer and encouragement. I know that sometimes in these situations it's hard to know what to say or do, but I really do enjoy hearing from people, it can be very isolating.

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

I've been waiting on test results before I posted anything new, and after several trips to the doctor, several scans, and many frustrating phone calls, Mom finally got the results: there is indeed cancer on several parts of Dad's spine. This is not unexpected, Dad has been weakening gradually over the last several months, and even with relatively good results from his chest CT and brain MRI, something has just been terribly off. He has been in a fair amount of pain, and he has had trouble walking. One leg appears to drag from time to time, almost like someone who has had a stroke. He began radiation today, it is Dr. Massey's hope that this will alleviate the pain and difficulty walking, though it may not do any good at all. He also has chemo on Tuesday, and we're not sure if Dr. Kelly will want to continue treatments if the cancer is spreading to other areas.

Nothing is set in stone, we cannot predict what the next few days or weeks will bring. I am no seer, but I can tell you that none of this is good news, and we are all too aware that Dad is living on borrowed time. There are hard decisions to be made sooner rather than later. Dad continues to fight on, he has not given up. He will not give up. Please send a prayer out for him, for Mom, and for our family.

"when something broke the surface, just to see the starry dome"

I relented about 11:30pm on Tuesday. Tyler had been begging me to take him out to see the meteor shower, but I was tired and had fallen into my routine of wanting to lay in bed, comatose, and watch mindless TV. But I’m trying to practice what I preach, to break outside of my comfort zone and enjoy life as it comes. Living does not equal sitting around in a rut. That’s merely existing.

We headed out in search of darkness, away from the city lights. Not an easy thing to find anymore, but we headed south, and found a dark street and empty parking lot at 133^rd and Roe. We lay down on a blanket and looked up at the heavens. We watched the meteors streak across the sky and then disappear as they vaporized into our atmosphere. We both sat blot upright as the brightest of the evening came shooting almost over our heads, blazing on the horizon and lighting up our faces.

We are just Mother and Son on this little blue planet orbiting a star in the middle of the universe. We are two of many, no more or less significant. Our hopes and dreams, accomplishments and joys, our trials and sorrows are infinitely infinitesimal in the Grand Design. But to me, they are infinitely important. They are everything.

It’s good for the soul to be reminded how insignificant we all are. I like to think of it as God grabbing me by the back of my shirt and yanking me back from total self-absorption. Our lives, even with the heartache and sadness and death and disease, are nothing short of miraculous. We all need to be summarily shoved off course from the tunnel vision of day to day life and be reminded of our true gifts.

"Age has brought me wisdom, but faith has brought me tears"

Dad had scans yesterday and they received results today: astoundingly, unbelievably, the tumors were 'a tiny bit better' - which given Dad's prognosis at this point, is truly remarkable. They went ahead with his chemo today, but Dr. Kelly is very concerned about his brain. He's been not only weak and unsteady, but at times his legs simply don't work. He has more bad days than good ones, so she suspects it may be an issue with tumor growth in the brain. Dr, Massey had suggested awhile back that we might consider 'spot treating' some of the more severe spots with gamma knife, so hopefully, that's still an option. He had a pretty nasty fall a few nights ago - gash on his head and a huge laceration/bruise on his back - and we're hoping to avoid that in the future.

As I've said before, countless times, we know the ending to all this, we just don't know how or when we'll get there. Dad's stubborn spirit and determination to prove everyone wrong is what has kept him going this long, along with the excellent care he's received from his doctors. I truly feel that Dad's situation is a marriage of science and faith. He has had top-notch treatment by one of the best specialists in the country, but he has also had many, many prayers by people all over the world! The last comment on this blog came all the way from the United Kingdom. A woman stumbled across this blog and left me kind words of prayer and encouragement - how amazing is that? A total stranger, halfway around the world, that is absolutely miraculous to me!

The last 16 months have been hard, I won't lie- for all of us in this family. But I like to think - and hope- that we're all taking something away from Dad's illness. What is the point of suffering, if not to learn and grow? I can't quite put into words what I have learned yet, but I know that as cliched as it sounds, I know life is way too short. We say the words often, but it's another thing to really feel that concept, deep in your bones. The clock is ticking. Time is too precious to stress and worry about things we can't change, or what other people think of us, or what we don't have. We all get caught up running in our little hamster wheels. It takes real thought and effort to stop, break out of your comfort zone. I'm worried I'll blink, and then the kids will be grown and gone, and I'll be old. I want to be in the now, to appreciate what is before me. It's not as easy as it sounds.

I thank you all for your prayers, when you think of how long ago Dad was diagnosed, can you believe how far he's come? Don't underestimate your role in the big picture, it all matters! Look to the sky tonight, it's the peak of the Perseid meteor shower. Make a wish on a 'falling star' if you see one. I know I will. For Dad.

I have been putting off this post for awhile. You'll forgive my lack of eloquence, but this is going to have to be a nuts and bolts, medical update only.

Mom and Dad saw Dr. Kelly last week, and she confirmed what we had suspected - this current chemo is the end of the line for treatment. Dad will have another scan in 2 weeks, and if he's not responding to treatment, then that's it. If he is responding, even then, I think we're looking at a very finite amount of time. Dr, Kelly did not give any estimate of how long he may have, as it's very dependent on the next scan. Dad is continuing to get weaker and weaker, we can see that he is failing. He is also scared and lonely, and that's hard to see. If you are reading this and you know my Dad, please take the time to drop him a note or give him a call, it would mean a lot to him. Thank you to St. Michael's Pastoral Care, who continue to be supportive and amazing throughout this. Dad loves all your visits! Keep my Father in your prayers.

I normally go to the drive through at my bank. True to my rushed, minivan driving, over scheduled suburban momdom, I rarely get out of my car unless I have to. I can't tell you why I did today, of all days.

I saw him getting out of his car as I was. Old, very old, wizened man, slowly making his way to the bank. I gave a thought to seeing if he needed help, but I thought the better of it - I didn't want to seem patronizing. Coming out of the bank, we were leaving at the same time. I held the door for him, and looked at all the pins on his baseball hat.

"You were a police officer?" I asked politely.

That was the question that launched an hour conversation, possibly one of the most profound of my life.

First, he reached in his pocket and pulled out a carved pin. He held it out to me. "What does that look like to you?" I leaned over it, quizzical. He continued "That's a black walnut. They're the ugliest things, messy, they stain everything. But you cut them in half, and look how beautiful! Looks like a smiling face! How can it be that God makes something that's so ugly on the outside and so beautiful on the inside?" He pressed it into my hand. "I carry these around with me, I make them to give away - never know who I'm supposed to give 'em to, but I know I'm supposed to give one to you."

I learned that he was a police officer, and also a veteran of WWII that was injured on Utah Beach. This was a man who, at 92, has lived 10 lives. I told him about my Grandfather fighting in the Battle of the Bulge, I told him about my Father dying of cancer. In 1985, they diagnosed him with esophageal cancer and gave him a few years to live. And yet, here he was. When he marveled at how long he's lived and trying to understand why he's still here, I found myself blurting out: "Because you're not done yet." He smiled and pointed his finger at me. "Exactly." He went on to talk about God's plan for us all, and how it doesn't make sense all the time - most of the time- but that when your work is done, it's time to go.

About 30 years ago, his daughter, son-in-law, and two grandchildren were in a terrible car accident. His ten year old granddaughter was killed. He told me about going into the morgue, and wanting to scoop her up in his arms, do anything to bring her back ("this was a child who loved Jesus," he told me.) and he says he swears he heard a voice say "Leave her with Me."

Have you ever had such a deep conversation with someone that the world around you seems to melt away? I was aware that people were coming and going and looking at us strangely, but I felt like I was in a bubble with this man. He looked at me very seriously and said "you know, you can be a disciple. You have the authority. When you feel the time is right with your Dad, you can sit with him and tell him to ask God for guidance. Go home and read John 16. You will understand and be able to minster to him." As soon as I got home, I read this:

"Jesus saw that they wanted to ask him about this, so he said to them, "Are you asking one another what I meant when I said, 'In a little while you will see me no more, and then after a little while you will see me'? I tell you the truth, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy. A woman giving birth to a child has pain because her time has come; but when her baby is born she forgets the anguish because of her joy that a child is born into the world. So with you: Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy."

I got goosebumps after reading that. The whole encounter left me feeling like I was a part of something bigger than I can comprehend. I was meant to meet this man. Thank you, Lloyd Robinson. You are my angel in a pick up truck. I will strive to be beautiful on the inside.

"if I leave you it doesn't mean I love you any less"

The Tarceva is most definitely not working. We got the results to Dad's chest CT today, and his main tumor has grown, as well as an addition of 5 or 6 new ones. The tumor on his adrenal gland has also grown. After weeding through his report and a lot of googling, I found out he has airflow obstruction and part of his lung doesn't inflate properly. All this probably is related to his extreme fatigue. He's been doing poorly for the last week, so Mom and I are not really surprised at this. Dr. Kelly wants him to get in asap for another brain MRI, and then next week he'll start on a new chemo drug - a really nasty sounding one called Pemetrexed. The side effects sound pretty heavy, and he's already in a weakened state. So, we begin more rounds of chemo and labs, and we wait.

I'm sorry, but I can't be eloquent right now, there's the reality of where we're at right now.

Shadows are fallin'
and I'm runnin' out of breath
keep me in your heart for awhile

If I leave you
it doesn't mean I love you any less
keep me in your heart for a while

When you get up in the mornin'
and you see that crazy sun
keep me in your heart for awhile

There's a train leavin' nightly
called when all is said and done
keep me in your heart for awhile

"When your heart is an empty room, with walls of the deepest blue"

My Mom has always referred to June 9th as the Worst Day. Thirty-eight years ago today, her mother, Adeline, passed away from ovarian cancer. She discovered a few years back that our good friend Krissie shares this same dreadful anniversary: she lost her mother on the same day, same disease. Different year.

Today it is pitch black out. Thunder is rumbling, clouds gathering. Literally and metaphorically. We have been waiting on results from a lung biopsy a dear friend had on Friday. I wrote to Krissie: "Today she gets to charge the beach and see if it's a group of Girl Scouts or Hitler's army she's up against." On this darkest of days, I get the news that it is indeed a recurrence of cancer she battled five years ago. I'm angry. She did this already, she fought hard and bravely, she beat it and regained her health. And all while being fabulous, because she is. She's amazing and funny and has been a good friend to me while I have walked this path with Dad. And as before, I find myself asking 'why?'

Why her, why not me? Why not you? I want to believe in God's plan, I do. I want to have faith, but it's such a hard, narrow path. There's no easy explanation for why bad things happen. There's no pert, pat answer to tie it up neatly with a little bow. Life is messy and complicated and painful, and while we all know this in the abstract, God, it's so hard in the reality of it.

I am once again left helpless. Words are failing me. It's taken me over an hour to write just this - I am mute with pain. Pray for my friend, for her family and children. Pray for a quick recovery.

The flames and smoke climbed out of every window
And disappeared with everything that you held dear
But you shed not a single tear for the things that you didn't need
Cause you knew you were finally free

'would I have been a better person, if I could only do it all again?'

Lung cancer still remains one of the most underfunded and under researched cancers. While there have been cutting edge leaps and bounds for breast, prostate, colon - as well as increased survival rates and early detection - the numbers on lung cancer have not changed much in the last 10 years. It's still the #1 killer among all cancers. It kills twice as many women as breast cancer. I encourage you to go to this link and read about it. I don't want to take anything away from the work that has been done for other cancer survivors, but the stigma attached to lung cancer just doesn't hold water. It's easy to think 'they're all smokers, they brought it on themselves' - but that's not always true. My father has never smoked a cigarette in his life. But that aside, even if they have, we're still talking about mothers, fathers, daughters, wives, sons... they deserve the same chance at life as anyone else. No one 'deserves' cancer. No one. When Dad was diagnosed, I can remember sitting in the hospital room watching him sleep, listening to every ragged breath, thinking 'what has he done to deserve this? What have we done as a family to bring this on?' The answer is: nothing. It's a genetic crap shoot. Not to mention a century of slowly poisoning the Earth. It doesn't matter anymore how well you eat or the exercise you get or the antioxidants you consume. It's everywhere: the air we breathe, the water we drink, the materials our homes are made of, the plastics we heat our food in, the food we consume. There's no escaping it. I find myself thinking that it's not a matter of 'if' I'll get cancer, it's a matter of 'when'.

Dad is doing well, for now. We're thankful for Dr Kelly and Dr Massey, they are what has kept him alive all this time. Them, and his rediculously stubborn, feisty, fighting spirit. The man tells cancer to f&*k off on a daily basis. We try not to dwell too much in the long term, because we all know what the future holds. We don't know when- a month? a year? - but we do know the ending to his story. We're just not sure about the middle part.

Summer has returned, and I find myself feeling deja vu, taking my late night walks, listening to my music, thinking about life and death, free will vs. destiny. My empathetic, sympathetic heart has been working overtime lately, and I am positively aching for people in my life. I found myself thinking, if I found out I was going to die tomorrow, how would I feel about the state of my life? What would I want my epitaph to be? My house isn't perfect, rarely clean, laundry never caught up. There is usually some sort of animal poop I'm shampooing out of my rug. I'm usually quite disorganized. I've never been any of the places I dream of going: I have not hiked up Roraima or seen Angel Falls. I have not snorkeled around the blue hole or seen the tortoises in the Galapagos Islands. I have never finished my college degree or written a book. I can go on and on about what I haven't done. And yet, I know what I have done: given up my college education to become a single mother at 23. Been a devoted mother to my kids, a good daughter and wife. And hopefully, the type of friend that people know they can lean on. My epitaph would say: good mother, wife, and daughter. Kick ass friend. And she could bake one hell of a pie. I think I'd be good with that. In the end, those are the things that matter the most to me.

and the sky is filled with light
can you see it?
all the black is really white
if you believe it
and the longing that you feel
you know none of this is real
you will find a better place
in this twilight

"Left with a trace of all that was, and all that could have been"

My father has now survived one year and one month. Thirteen months since a diagnosis that was tantamount to a death sentence. Cancer so severe and widespread that several doctors said treatment was futile. While his survival is, in and of itself, nothing short of a miracle, it is not without it's price. People on the outside marvel at his resilience and determination. They hug me and say we're all so lucky that he's still here. And I wonder how I can convey the toll it has taken on all of us, without seeming ungrateful.

I have continued to lose my Dad in chunks. Cancer his been chipping away at him for a year, and he is nothing like the man he was a few years ago. His intimidating intellect, gift of writing, as well as his ability to see the world through the camera eye, has all fallen away. He has lost his autonomy and free will. Mom and I have watched, helpless, as he has slowly lost everything that makes him who he is.  Backpacking, photography, writing: all things tied into the fabric of his identity. All things he is unable to do.

I can remember watching him in the darkroom as he developed photos. Standing on a chair so I could see, leaning over his shoulder and watching, fascinated, as he'd create this perfect image out of nothing. He'd talk about light and darkness, shadows and timing. He'd always tell me that photography was half science and half art, and the trick to being really good was to balance the two. It wasn't until I was a teenager that I realized that not everyone's family albums were full of works of art.

                                                             Me, age 3, photo by Dad

People who meet Dad now, for the first time, think he's doing wonderfully. And if you didn't know him before, I suppose for someone with tumors in the brain and cancer throughout other major organs, he is remarkable. But I wish they could have seen him before. I find myself crying more for what could have been, for his lost talent and potential, for what we all could have had, what our family could have been. And it still seems surreal that it's all led us here. Addie asked me the other day when I was going to die. She's four, this shouldn't be high on her list of topics. And yet, there it is, we are all living with Death these days. I wanted to give her the kid brush-off answer, but she's too smart for that. All I could say was 'hopefully I'll live a long time. But I don't know. No one knows for sure. But we'll all be together in heaven someday.' 

We are all in a holding pattern. We wait, we hope, we live in isolation. And try as I might, I can't seem to make anyone understand that while my did is indeed alive - I am not getting 'more time' with him. The best parts of him are already gone.

"And happiness and peace of mind
Were never meant for me
All these
Pieces
And promises and left behinds
If only I could see
In my
Nothing
You meant everything
Everything to me"

"You can carry that weight with an iron will, or let the pain remain behind you"

I had given very serious thought to shutting this blog down over the last few weeks. My mind has gone dark, there has been no inspiration, nothing to say - and what little I did want to say has either been a.) not fit for public consumption, or b.) simply too private and painful to want to share.

I am stuck in a perpetual winter. Spring will not come for my father, nor for our family. I wait underground with the roots of my herbs for sun, for hope, but it won't come. There is a shift I can't quite express: a knowledge in all of us that there is an end point to all this. I can see it in my Dad's eyes, I can feel it in the mood of each family get together. We tick off the moments in measured morsels, saving up each memory for the future. I find myself willing to remember every detail of conversations, dinners, trips for ice cream - I want it to be imbedded and imprinted so that when it's all over, and he's gone, I can still see every detail.

But the reality is, over the years, it will all fade. My mother can't remember the sound of her mother's voice. My oldest son's namesake, who died 17 years ago, I find myself struggling to remember what he looked like. These are the moments where I just don't understand any of it. Or as Freddie Mercury said: 'does anybody know what we are living for?'

Lent is coming to an end. Tuesday marks the one year anniversary of Dad's diagnosis, what will go down in my history as one of the worst days of my life. One year ago, I knew my Father would not live to a ripe old age. He was so sick we weren't sure he'd live through the week. I remember going into the chapel at the hospital and praying on my knees for just one more year: I wanted one more of the holidays, of everyone's birthdays. One year, God, and I can be at peace. God gave me my year. And I can't say I'm at peace, though I'm trying. Humans are greedy. Even though we know our time on Earth is finite, we're always left wanting more. But I know Dad's living on borrowed time. I know that I will have to figure out how to say goodbye. I spend more than a few sleepless nights wondering about death and what it feels like. And now that there are no more prayers of miracles and more time left to pray, I find myself saying 'please, God, when it's his time, just let it be fast. Don't let him linger. Let him just go to sleep one night and not wake up.'

When I was a little girl, I worried about and obsessed about death. I can trace my anxiety back to a very young age, and don't ask me where it stems from - it's very much a family trait. We're just 'wired' differently. I would lie awake in dread of losing one or both of my parents, and it terrified me. I've never thought I'd be able to go on without them.

Tonight, we went to the Agape Dinner at St, Michaels'. It was a lovely blend of Passover traditions with Christian ones. We had a really wonderful meal with our children and friends, and afterwards Mother Lisa gathered the children and told them about Jesus washing his disciples feet. Each of the children got to have their feet washed, as well as wash someone else's - I found myself sobbing watching Henry wash Tyler's, and wishing my parent's were there to see how sweet a picture this was, how blessed and loved we all felt. And for just a moment, I felt what it would be like to not have them here. And while it is still terrifying to me, knowing I have this community made it seems not quite as scary. I watched Baby Mabel get her feet washed, I cradled little Hattie, and I left with the knowledge that life does go on. After Dad's gone, after I'm gone, there will still be babies born and holidays to celebrate and milestones to commemorate. We just have to believe we won't be forgotten. And if you're loved, I don't believe you will be. Even if the people who love you can't remember your face or the sound of your voice.

The Pastoral Care at St. Michael's has been absolutely amazing. Dad looks so forward to their visits each week, and he's been in a much better mood, having that to look forward to. Their work is truly a gift, and such a labor of love. I hope they all realize how much joy they've brought to my Dad.

The steroids don't seem to be helping Dad like they were, and he's getting less and less steady on his feet, and start to lean to his left side, as he did before his diagnosis. We can't do anything now but wait.

"You call roll the stone
To the top of the hill
You can carry that weight
With an iron will
You can drive those wheels
To the end of the road
You can try to deny
The weight of the load"

"I will follow you into the dark"

The steroids helped Dad immensely - for about 3 days. That's the cruel part of the drug, they don't want to leave him on the high dose, so we get small bits of him being 'normal' - and he gets to be reminded just how sick he really is. He's begun the tapering off, and the symptoms are already coming back. Last night, he said it felt like someone had sliced his gums. And while we know the pain is phantom, it feels very real to him. And he's frustrated that there is nothing anyone can do about it.

My Dad is dying, we are on the downhill side of this. There is no way around it, no delicate way to say it. We can hope and pray for the Tarceva to work, but my gut tells me it's not going to. Dad has never mentioned the possibility that he won't survive this, and I have always assumed that he's in denial, and we're not supposed to talk about it. Until yesterday.

I took Dad out to get ice cream, and we made a pit stop at Land of Paws so I could show him the Wheaten Terrier I'd been thinking about. He enjoyed looking at the puppies, and started talking about Scottie dogs. I recalled that he'd always had a thing for that breed - given his name and all - when we played Monopoly, he was always the Scottie playing piece, and I guess he had several Scottie-themed things as a kid. As we were leaving, he said, in an off-hand way "When I'm gone, you should get a Scottie Dog and name it Apaa." I stopped in my tracks for a minute. The wind was knocked out of me. He didn't look at me, and I responded "No, we'd call it Ed."( - My father's actual first name, like my daughter, he goes by his middle name. ) He looked at me with his eyes full of tears, and said "I'd like that."

If Heaven and Hell decide

That they both are satisfied
Illuminate the NOs on their vacancy signs

If there's no one beside you
When your soul embarks
Then I'll follow you into the dark

"Never worked so long and hard to cement a failure"

I find it interesting that nearly every doctor we see downplays new tumor growth. I'm sure it's done for Dad's (and our) benefit, but I sometimes want to shake them and say "I don't care how 'small' it is, get it the hell out of his body!" 

The MRI results showed a new tumor in the corpus collosum, 6x8 mm. It's basically between the two hemispheres, in the region that communicates one side to the other. Dr. Massey talked gamma knife and other options, but for now, she wants to hold back and see if he responds to the Tarceva. Mom was able to secure a grant that will cover about 4 months of the drug. It's a shot in the dark, as he isn't a carrier of the protein that usually yields the best results, but it's worth a try. I talked to the doctor about his decline in thought process and balance (he fell the other day, on grass, thankfully) and she was petty adamant about him using a walker. That suggestion went over like Mother's Day at an orphanage. His pride is getting in the way of his better judgment, and we worry continually about a severe fall, breaking a major bone, or - god forbid - hitting his head. I asked Dr. Massey about the possibility of the tumor causing 'phantom' pain. He's complained for months about sinus pain (x-rays showed nothing), tooth pain (again, x-rays showed nothing), and pain around his mouth. She didn't think it was causing it, but put him on Decadron just to see, and sure enough , after two doses of steroids, he seems better. Still somewhat unsteady and brain foggy, but the other odd symptoms have lessened. I'm fairly concerned that such a small tumor is already wreaking such havoc on his central nervous system. It doesn't bode well if the Tarceva doesn't do the job. 

That is where we are at now, and I am too emotionally and physically exhausted to write any more than the bare bones of what's going on. Please send an extra prayer out for my Mom, who is recovering from a diverticulitis flare up.

"And still to come, 
The worst part and you know it, 
There is a numbness, 
In your heart and it's growing."

"Believe it if you need it, or leave it if you dare"

I know, I promised new blogs ages ago. But my writing muse? She has been a fickle one lately, and when I sit to write, I find no inspiration. Couple that with an intense need to keep my feelings private for once = no writing. 

I know that I can be too honest here. I know that I offend, I upset - people want to hear inspirational, happy - sunshiny thoughts, and lately, I just can't muster it. We have been doing this dance with cancer for almost a year, longer than any of us thought we would. Dad has defied all odds in his survival, and we are all grateful for that. However, there is an end point to all this, and that thought is never far from  of our thoughts. We dwell in a reality of 'how much longer, how much longer', and I spend sleepless nights worrying and morbidly wondering what it will be like, at the end. My father's death. Yes, we can argue that it's true of all of us. We don't know if we'll die tomorrow, but very few of us know with concrete certainty that the clock is ticking.

Last night, I attended Ash Wednesday service. My first church service in a very long time. God and I, we've had a strained relationship the last year. And while I talk to him on a daily basis, I just could not muster it in me to visit His house. I'm sure he's understood. But it was Addie, of all people, that insisted we go. She had watched them burn the palms in preparation for the service, and she was determined to go and 'pray for the sick people and the dead people.' I tried to tell her it was a serious, somber service, and that she might get bored, but she was going. My favorite exchange of the night went something like this:

"Addie, this is a very somber service, where we're supposed to look into ourselves and think about how we can be better Christians. And if you listen well, and are very quiet, you  might feel the presence of God."

"Presents!? I love presents!"

"Let me try this again...."

Out of the mouths of babes....

So we went, the three girls: Mom, me and Addie. And Addie was good, and quiet, and listened. And so did I. I think we can all admit that from time to time, we all do a little 'spacing out' in church. Your mind wanders a bit before you snap back to reality. But I really listened. I wanted to hear what God had to say to me. As I listened to the Ash Wednesday liturgy, the words about the meaning of Lent, the giving up of worldly things, of delving into your spiritual world. Forty days of penitence. Forty days Jesus wandered the desert and was tempted by the devil. Forty days Moses spent on Mount Sinai. Forty days of rain that flooded the Earth. My family has been living a very long season of Lent. We have felt alone, we have heard the storms raging, we have felt abandoned by God. We have suffered greatly, all of us, but so do many. We are not alone in our suffering, the world is a pretty dismal place. I listened closely last night, and I know that we need to cling to our faith, and the knowledge that Christ died so we could live. But really, at this point, Heaven is such an abstract concept to me, I can't wrap my brain around it. It's easy to repeat the prayers with rote memorization, it's easy to believe when all is calm and good. When your faith is tested, it's a lot harder. It's real work.

I am a big believer in signs. Not big signs, but little ones. I believe that if you pay enough attention, you will find signs from God all over the place. I went up for communion last night, and the layperson approaching me with the wine was an older woman, very nice, but suffering with some palsy of her hands. As soon as the cup touched my lips, down it went, all over my face, down the front of my shirt. She was mortified, I was amused. I said to Mom 'well, now I'm truly bathed in the blood of Christ' - and I have to say is: that God, he is the prankster. I sent out a small message to Him: "I get it. I know. Keep the faith."

I have seen Dad start to fail in small ways: he's weaker, less steady on his feet, gets tired easily. He's had pain in his sides, and a bone scan revealed a small amount of cancer activity in the 5th ribs. Dr. Kelly moved up his CT scan, and that revealed some new, 'small' activity. A few new tumors in the lungs, and the tumor on the adrenal gland had not shrunk as much as they would have liked. He is not eligible for the latest drug trial, as he never smoked, and we're trying to get his on Tarceva, but the co-pay is $2000 a month, so we're looking into programs that can help with the costs. Because, you know, they like to eat. Next week, we see Dr. Massey and find out what's going on in his brain. I'm concerned, mainly because I can see that he's having more trouble following conversations, and sometimes, he'll say things that make absolutely no sense. I know he's worried, too. My biggest fear is that he'll be scared and in pain, and that is what I pray for him every day: for peace, acceptance, and no pain.

"Walk into splintered sunlight 

Inch your way through dead dreams to another land

 Maybe you're tired and broken Your tongue is twisted with words half spoken  and thoughts unclear

 What do you want me to do to do for you to see you through?

 A box of rain will ease the pain  and love will see you through"

I know there hasn't been an update in awhile. Two coming this weekend, been brewing and growing in my head, resting quietly and slowly taking shape. Two phrases to think about until then: Sisyphus and Holy Wars.

Hope you all have a good weekend.

'Love left a window in the skies'

I am irritated by all the brew-haha with 'Marley and Me'. Why? 

Because before Marley, there was Trixie.

I met Trixie on my second date with Bryan. She jumped on me. She slobbered. She would not hold still enough to pet. She was a spaz. 

I can't say it was love at first sight. Or second. Or 45th. She was a giant pain in every way a dog can be: she peed all over the house. She refused to go outside if it was the tiniest bit rainy. She chewed on the woodwork on windows - down to the glass panes! She would eat anything, including a bar of baking chocolate, leading me to spend a ridiculous amount of money at Med Vet to have her stomach pumped, only to have her come trotting out to the waiting room, perky and happy, charcoal still around her muzzle, as if to say 'That was fun! Now what?" She also pulled a wrought iron railing off our porch - bolted into concrete - apparently weakened from the years of her lead tugging at it with all her might. I came out one night to no dog, no railing. The hell? I called her and called her, finding her in the neighbors yard, sheepishly pulling 50 pounds of wrought iron behind her. She seemed to have nine lives, and was insanely healthy. We joked that somewhere in our attic was a painting of a very old Trixie; that she had made a deal with the Devil to outlive us, if only to drive us crazy.

From the moment I moved in, I tried to train her, but to no avail. I became convinced she was just not that smart - and yet, she was loyal and sensitive to my needs. For the first several years I lived with her, she would follow me around the house, all day, licking the backs of my legs. She slept on the floor next to my side of the bed. And, when I was pregnant with Henry and in preterm labor, so tired and sick, she walked with me up the stairs, even though I could only take one step at a time. When I stopped, she stopped, looking at me patiently and waiting. What she lacked in, well, everything a dog is supposed to be, she made up for with her heart.

Sadly, Trixie began failing several months ago, with multiple ailments snowballing into a case of 'we can't fix her'. She lost more and more weight, became confused and would pace in circles around the house, or sleep so soundly I would have to make sure she was still breathing. I asked the vet 'should I bring her in for more bloodwork? Maybe we could try a different food?' And he just slowly shook his head. 'It's time.'

I didn't think it would be so hard. I thought 'this is Bryan's dog, I'm not really that attached'. And yet, I found myself crying off and on all day, second guessing our decision, thinking maybe we should wait... but in my heart, I knew I had to do it. 

They laid a blanket on the floor, and we sat down with her. It took longer than I thought it would to get the process going - she fought it until the end, and all I could do was bury my face in her fur and cry. She finally fell asleep, and the drugs started to take effect. The vet told me to take all the time I needed, and I laid next to her on the floor and put my head on her chest. I listened to the thumping of her heart - that big heart of hers that kept us from throttling her all these years - as it became slower and slower, and finally stopped. It was so peaceful, so quiet, just me and her. I stayed a few more minutes, then went and got the vet. "I think she's gone". She came in and checked, and then we gently lifted her off the floor and onto the table. I whispered into her ear and told her good bye. Because that was all that was left to say.

'there is only Mercy'

I don't look for big miracles. I don't expect burning bushes, or angels appearing in my room. When I think about a sign from God, I think about the little things. Those small gestures that let you know that you're not alone, that someone out there sees you and is listening to your pleas for help.

It's been a hard, long, lonely winter. I've spiraled deeper into an isolated existence, metaphorically hibernated within my own head. I've felt so cut off from the rest of the world, and unable to communicate with anyone outside my family and closest friends. Lately, I've been offering up some prayers to say 'look, God, I'm tired. I'm lonely. I wonder how much longer I can do this and not completely lose my mind. So, could you maybe throw me a bone here? I'm lost.' I'm a bit of an informal prayer. I don't do the thees and thous and thine will crap. I just speak from the heart and hope He's listening. 

It started with Charlotte's mom at preschool stopping me in the hall. Grabbing my arm, looking me in the eye 'How is your Dad doing? How are you doing?' I don't know this woman very well, she doesn't really know me, which almost made her reaching out more meaningful. I found my words tumbling out, like a floodgate opening as I told her about the latest scans, and that it's not really good, and she even let me talk about dying and didn't try to give me a pep talk. I walked out with Addie that day and thought 'well, that was one angel. Thanks, God.' 

Then it was the woman at the coffeehouse, who I've been running into for the last seven years, since we were both pregnant. We always do the idle chit chat thing, and I don't think I've mentioned Dad being sick to her, and it somehow came out today. She nodded her head 'My Dad died of prostate cancer two years ago.' We commiserated about the difficulties in caring for an ill parent, and how it makes people really uncomfortable when you talk about death and dying. I walked out into the sunshine and thought 'that's two. I don't feel quite so alone today.'

And then, it was Mom relating a phone conversation she had with a family friend who had been catching up on my blog and perhaps gave me the nicest compliment about my writing anyone has given, and then, in referring to this entry, said 'I was there with her on her bike. I was riding with her.' And I cried. Because none of us want to feel alone, ever. And I realized that no matter how isolated I may feel, there are those of you out there reading this that are with me in this journey. I'm not just sending words out into a void. Just like sending out my irreverent prayers, someone is always listening. 

'one day my kite will escape forever

and I will jump to catch the trailing string

wishes and wants will fall from my pocket

as I wave, full of peace'