"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'