'When with every day, another bit falls away'

Henry turned seven years old, and was fortunate enough to have both sets of grandparents at his birthday party.

Here I am, looking very tied, but reveling in having everyone together:

Paw reading to Addie:

Birthday in red:

Making a wish:

We had a wonderful, whirlwind visit with my in-laws, and I was truly grateful for the opportunity, yet again, to have everyone together. Each time, I know it could be the last, so we all make the most of it. My husband's parents are not just my in-laws, they are very good friends to me and my parents, and I feel so lucky to have them in my life. They are kind and patient with Dad and all his memory lapses, and I can talk bluntly with my father in law about the harsh realities of Dad's illness. He lost his father to lung cancer as well, and knows all to intimately how difficult it is, how tiring it can be. I'm fortunate to have people like them in my family.

I find life to be exhaustingly busy, and yet somehow at a standstill. My usually full calendar is utterly empty of any and all reminders, save for doctor's appointments. It would seem, on the surface of it all, that I have nothing going on. But we all know not to trust the image on the surface, it's never the truth.

The little things give you away

(sorry for the prolific writing. Floodgates have opened, and sadness is always the most prolific writing time for me. This is actually cross posted from my private blog)

I've been struggling with a myriad of issues. It's not just about Dad being sick: it's all the crap that goes with it. Your entire life, from the top on down, is affected. Nothing stays the same. People you thought were your friends, as it turns out, aren't. But then you find friendship and support in the most unlikeliest of places. I've spent months being really angry about it, feeling abandoned and ignored, and only recently have I begun to understand it. 

Life isn't perfect. Fifty years ago, our grandparents understood that. Past generations knew. People were used to struggle and hardship, they didn't expect life to be smooth sailing. There were horrible wars to be fought, there were epidemics of influenza, polio, measles, mumps - diseases we don't worry about that back then would wipe out tens of thousands of children. There was starvation, there was the dust bowl. Life was hard, and you tried to take joy in the little things in life. 

We've come a long way from that era. We are in a world of total excess. We are the society of 'gimmee', of instant gratification. Twenty four hour news desensitizes us from the horrors in the rest of the world, though most people don't pay attention to the news, as it's 'too depressing'. We shop at Costco and buy our chicken nuggets in bulk, we buy more food than we could possibly eat, and live our lives like the glossy cover of a magazine, never wanting to delve  below the surface. We envy, we covet, we buy into the facade. We believe our lives are supposed to be perfect. I admit it: I moved to suburbia and I bought into the lie. I believed that I had to fit in - and fitting in means having more. It means masking reality. It means: no tragedy.

When something bad happens, you can see some people recoil. It's palpable, visible on their faces. It's like the lions picking out the weakest member of a herd - they sense the weakness. Some people don't know what to say. They know that they should say something - but you can tell that when they ask 'how are things?' - they really just want the stock answer. And it's those times I have to struggle to not be rude and say 'really? Don't bother.' - because I feel sorry for them, I do. I'm sad that they're so disconnected from other people that they are completely unprepared for dealing with any raw emotion. 

Then there are those that just don't want to be around it, period. People that are so focused on presenting the perfect, idyllic, strife-free life that they are woefully unable to deal with sadness. They think that illness and death is somehow contagious, like an airborne virus they'll catch just from being in the same room with me. It will infiltrate into their painted on perfect life, and eat away at the facade until they, too, can see they it's all a lie.

Am I judging? Yes. And I do it unashamed and unabashed. Because here's how I deal with tragedy and loss: when my neighbor was sick and dying of breast cancer, I went to see her at he hospital, several times. It was difficult, and I dreaded doing it, but I kept thinking: if the roles were reversed, and it was me dying, what would I want Buffy to do? I would want her to suck it up and come see me. 

I'd never been around someone who was dying before. You could feel it in the air. It was oppressive, dark. Death was crouched in the corner, waiting. The last thing I said to her, I whispered in her ear I would keep an eye on her kids, I'd look out for them. Because if it was me? I would've wanted to hear that. This is where I differ with the vast majority of the rest of suburbia. I am able to put myself there. I am over actively empathetic. I always think 'that could be me.' Easily. Where do I get off thinking that nothing bad will happen to me or my family? The hardest part for me is faith. I struggle to hold onto my faith. I pray for guidance. I don't pray for miracles. God doesn't strike bargains. I believe He has a plan, but sometimes I think His plan sucks. I try to make the best with the hand I'm dealt. I try to make each day good, even if it's in the smallest, most imperceptible way. And I try to have compassion and empathy for everyone, as best I can. Because I always ask myself: if it was me, how would I want to be treated? How would you want to be treated?

"There's little we can say and even less than we can do, to stop the ice from getting thinner under me and you"

I rode my bike on one of our unusually warm days, down to the Village and winding through Mission Hills, up to my old grade school and down to Mom and Dad's house. I have lived in this city my entire life. Thirty-six years living in the same 10 mile radius. There isn't an inch of this town that I don't know, that isn't immersed in my history and branded in my memory. The city has changed over the years, but I can see it like it was when I was a child, and when my parents were young - my age. 

There was a red barn on Mission Road, next to St. Ann's, where those condos are now. When I was very little, they sold Christmas ornaments, and I can remember going in there with Mom and Dad and Steven, I was so young I couldn't reach the counter. Mom let me pick out an ornament, it was a little wooden girl with red yarn hair. She hangs on my tree now, her hair is coming undone.

The Village used to be all pastel and Spanish style. There was a burger place with the unfortunate name of 'Smaks' - I put a sticker from there on the inside door of my chifforobe, and it's still there today, in Addie's room, a testament to the unusual stickiness of all stickers made in the 1970's. There was the toy store that went out of business years back, and I can remember looking at all the Madame Alexander dolls up high on a shelf, and wanting one of those big baby dolls so desperately. My parents, despite an financial struggles they may have had that year, made sure that Baby Victoria was under the tree on the Christmas Eve in 1976. 

My old grade school hasn't changed too much, and that ride home made me feel like I was 8 years old again. I was - and still am - a square peg that just doesn't fit in the round hole of suburbia. School was not the best experience for me, and that route home meant comfort and a place where I was free to be my own quirky oddball self. I was always lucky to have a family that loved me unconditionally - let's face it, in a society where the emphasis is on appearance and achievements, true acceptance is in heartbreakingly short supply these days - and let me travel my own path in life. 

I have, for years, loved the comfort and familiarity of living here. Sometimes, lately, the memories are too hard. Everyplace reminds me of Dad, my youth, his strength and wit, our life together. There are nights where I lie in bed, unable to sleep, and I want to get in my car and just drive away. Go somewhere where nothing is familiar, where I don't know anyone. Where I can walk into a store or a coffee shop and no one greets me or knows my name. I lie there in the dark and imagine a different life, and what it might be like. I know I can't run away from this. The memories of what Dad used to be will follow me everywhere. 

No matter how fast I rode my bike, how hard I pedaled, I couldn't outrun it. Someday, the memories will be sweet, but for now.... there is just bitterness.

"We're not the same dear and it seems to me.
There's nowhere we can go with nothing underneath.
And it saddens me to say that we both know it's true.
The ice was getting thinner under me and you"

"there, in the midst of it, so alive and alone, words support like bone"*

First post of 2009. and unfortunately, not a good one.

We saw Dr. Kelly yesterday for results from his latest CT and then to get chemo, our usual routine. I have to say, I had a feeling it wasn't going to be good news. The tumor on his adrenal gland has almost quadrupled in size since the last scan 6 weeks ago. It has grown 4mm in one direction. I have a feeling that taking him off of the carboplatin was part of the culprit. He's been getting just the taxol for the last few cycles, and apparently, it's not enough. So, no chemo for now, Dad starts radiation in a week. Every day for two weeks, then scans a month after that. After that, we have two options left, one of which is a clinical trial she thinks he'll qualify for, the other is another chemo medication. And then, that's all. 

Our future is full of both wild uncertainty and most concrete certainty, all at the same time. All we can do is take the next step and wait. Please keep all of us in your prayers.

*Mercy Street, Peter Gabriel's homage to Anne Sexton

I get a little warm in my heart when I think of winter*

Holiday highlights in pictures.....

Dad waiting impatiently for the kids to come home and find the kitten Santa

left on the doorstep:

New kitten in basket, tired from that long sleigh ride from the North Pole:


Henry, very happy, holding Moses (he came in a basket, what else were we going to name him!):

'Real' letter from Santa:

Christmas has come and gone, and here we are, on the cusp of a New Year. I have written a number of journal entries in my head, but none have made it this far. So many of my thoughts have just been too personal, not something I feel is meant for public consumption. I think my reality is a little too real for a lot of people.

We made the best out of Christmas that we could. It wasn't Dad's best time - he was doing really well about a week before Christmas, and then not so much on the holiday itself. The saturday before, he came over and made spritz cookies, and I made steak frites and pomme frites. We even had Belgian beer - and Dad remarked that he didn't need to travel to Belgium now, because surely the food couldn't be any better than this. We had a really wonderful day and evening with him, and Mom said that was his Christmas! We're never able to predict how he's going to feel from one day to the next. He can have three or four really great days, where he's lucid and walks well, and can carry on a conversation and follow things, and then we'll have a week where it's just not good. And the bad days can wear on you to the point where you wonder, really, how much longer you can go on and be strong. 

People ask me a lot how things are, or how Dad is. And sometimes, I have a hard time answering, because it's not a simple reply. At least, not at the heart of it. Because the reality is this: even when the news from the doctors is 'good' - and I use this term loosely - our lives with Dad, and his life, doesn't change. He's still difficult to deal with. Sometimes he gets angry, combative, mean. Then the next moment, he's fearful and contrite and sad. His mind doesn't work so well, he can't remember things, or his brain gets stuck in this 'loop' and he'll become obsessed with a certain train of thought that he'll repeat over and over. He's frail, his clothes hang on him. He shuffles when he walks, he's unsteady and weak. We live in fear that he'll fall and get hurt. Sometimes, his face will look so blank, just like there's no one in there, and I wonder where my father has gone, and if he'll ever come back to me.

The reality of cancer is not pretty. But this, as I've said, is our new normal, and we make the best of it that we can. Some days, I handle it with grace, and some days, I don't. I'm grateful for his good days, and sad and angry at the bad ones. So much of who my Dad was is already gone, and that, some days, is just too much to bear.

Thank you all for your concern and friendship this past year. I hope you all had a wonderful holiday spent with those you love. Here's wishing us all peace and health 2009.

*all my blog titles, in case you haven't figured it out, are song lyrics. Usually whatever I'm listening to at the time. This is from the Tori Amos song "Winter"

"these are the things that take my breath away..."

I've been thinking a lot about forgiveness lately.

We've all done things, said things that we're not proud of. Maybe we had the best of intentions and it came out wrong. Maybe we had every intention of hurting someone. Maybe it was just ignorance, and we walked by, blissfully unaware of the pain we caused. Whatever the excuse, we have all done it. As I've grown older, I've started to think more about those wrongs committed on my part, I crave absolution and forgiveness. 

I had a friend some years back that I hurt deeply. I can sit and rationalize that everything I said was true, and that I was concerned about her life, her path, her children, but in the end... I judged her. I may have had the best of intentions, but it was poorly, terribly executed, and it cost me a friendship, one that I never ceased missing. Now, many years later, I'm mortified that I would ever judge someone I cared about so harshly. I don't want anyone judging me or my actions, and there is nothing about my life that puts me above anyone else. And I've learned over the years that there are some things you just keep to yourself - I think deep down, we are all well aware of our faults and shortcomings. None of us need them pointed out, it serves nothing but the make the other person feel terrible. 

I never thought this friendship was salvageable. I assumed I was beyond any sort of redemption in her eyes. I figured, at some point, I would run into her, and she would rip into me. And I felt she had every right. I felt I deserved it. Years went by, and I did see her out and about. She was always nice, pleasant, if a little guarded. I still waited for the other shoe to drop, until one day, through the strange miracle of Facebook, I found myself at her house for a Thanksgiving get together. Deep down, I still figured she must despise me, and I still felt I deserved it. 

The thing that struck me hard, I mean really blew me away, was her kindness to Dad. She hasn't seen him in years - probably since my wedding. She talked to him, made sure he got in line for food, introduced him to her friends. It was a selflessness that defies explanation, and I was, and continue to be, deeply humbled by it. The funny thing about forgiveness is: we often forget to forgive ourselves. We beat ourselves up over things we can't go back and change. We sit in an imaginary confessional, knowing full well that no amount of Hail Marys will take the bricks from our shoulders. When you go to church, and you confess your sins, do they really just go away? Does the hurt you caused cease to exist? Maybe the absolution serves as a placebo for the real thing. Because when it comes? It will take your breath away.

Thanksgiving this year had a deeper meaning for us: another holiday Dad has survived. I mentally tick them off in my head, a little morbid laundry list of things I hope to get to do with Dad before he dies. After five or so good days with Dad, we had a rough holiday. He was out of it again, and weak, nearly falling several times at my house. He was determined to go to Squaw Creek today with a friend to see the eagles. Mom and I were very concerned, but as usual, he pulled through and did fine. I talked to him tonight and he sounded like himself. We never know from one day to the next how he'll feel. We don't know what the future holds anymore.

sometimes it snows in April

In the end, sometimes, this is all that's left......

It's been a rough few weeks for our little family. Dad had a much more difficult time tolerating chemo, and had about a week of severe weakness and exhaustion. He was 'out of it' most of the time, it was difficult. He's made his way past the worst of it, and we've enjoyed several days of him being like himself. 

Last Tuesday, I woke up to our kitten, Mendel, falling off the bed. He seemed to lose use of his front legs. The vet was unable to find an underlying cause, but tried steroids and antibiotics, hoping it was an infection or parasite, but by Wednesday night he began having seizures, and by the middle of the night, I was up with him every 15-20 minutes. At one point, wrapping him in a blanket because I was afraid he'd injure himself after the 5th fall off the bed. By morning, what I had to do was painfully clear. I've never heard my daughter cry quite like this before, it was a wail of true pain and anguish. My kids, these last few months, have learned some difficult lessons: sometimes things can't be fixed. Sometimes doctors can't make you better. 

So, we lost our 7 month old kitten. Dad was devastated. Mendel had brought him so much joy. He said 'I didn't think I'd outlive the kitten.' On Wednesday night, when I was still vacillating as to what to do, he said to Mom 'If I'm ever suffering as much as Mendel, please put me out of my misery.' That offered me a real moment of clarity. We offer our pets more dignity in death then the people we love. That's something I can't understand.

Last night, as I tried to fall asleep, I felt like my brain was on repeat. I kept thinking: Leo is gone. Mendel is gone. And soon Dad will be gone. It was like a broken record, over and over, and I laid in bed and cried in the dark. I sometimes feel like the world is going on without me, and I move in slow motion, dwelling in an alternate reality, unable to really communicate with anyone outside of what I deal with. It's a hard path to travel, but we all eventually walk it. We all have to lose our parents sometime, face our own mortality and fear of death. I'd like to say that everyday I carry myself with dignity and grace and handle things perfectly (with a clean house) but I don't. I struggle and get angry. I lose my patience. I want to hide from my kids sometimes. But I keep going. We all do, we have to ride the roller coaster until the end.

Until then, we try to find joy in our lives, and there is always joy to be found. Even if you have to look a little harder some days. We celebrated Tyler's 13th birthday, and I felt gratitude that Dad was there. Now we look on to Thanksgiving and all the preparations that go with it, and I feel relieved that we've passed another milestone. 

I hope you all have a wonderful holiday. Be sure to look for the joy.