"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."