I think it was a year ago

I think it was a year ago that I stood in our kitchen, watching our son crawl back and forth like a pinball.  I think it was a year ago that I believed everything was OK because you didn't call me when you heard from the doctor.

When you said I would know how worried to be by when you talked to me, I thought you meant you would call me right away if it was cancer and you would wait until later to update me if it was nothing.

In the future, I will ask people to just call me either way.  Lesson learned.

You probably thought I didn't remember.  If I were to argue with you about it today you would cite it as a prime example of my "not listening."  For two communication studies majors, we sure had a hard time communicating.

And just like that, Christmas was sort of over.

I can't even remember what I gave you for Christmas last year.  I have no idea what your main present was. It must have really sucked.

But I loved you on Christmas, and every other day.  And I have to believe that was enough.  And that I heard the important things, and you forgave me for "not listening" to the rest.

I don't know how people deal with cancer for years and years and years.  I guess the same way that people deal with loss for years and years and years.

I guess all things get a little easier with time and practice.  Even this.

I thought I was doing so well

I thought I was doing so well.  But today I was weak and wanted to call his phone, wanted to hear his voice on the message, wanted to remember him as a real person with a voice and a desire and a brain.  Instead I heard "this account has not set up their voicemail."  30 min on the phone with a sympathetic but unhelpful AT&T confirmed my fears.  For some reason his voicemail had been reset.  For some reason his message was gone forever.  For some reason.  It is such a small thing, I shouldn't have broken down crying.  I hadn't even called the number in 7 or 8 weeks.  But the fact that I couldn't, that even this last vestige of fantasy had been stolen from me before I was ready, it just pushed me over an edge.

I guess this means I can give up his phone account now, save myself $50 a month that I didn't need to be spending.

Am I ready to let go of his phone line?  Am I ready for someone else to have his number?  Of course not.  But I wasn't ready for any of this.

I go along and I do so well, and I look at myself and think "I sure am doing well!"  But that's because I skim past the injustice of it.  I ignore the unfairness.  I luxuriate so much in the silver linings that it's as if there is no cloud at all.  A cloud is just water vapor.  A cloud is just passing through.  Silver stays. Silver can be melted down and fashioned into something else.

I can't say this is unfair, because life and death are never fair.  I can't shout at God because I just don't believe there is this grand order to things.  I didn't do anything wrong.  Keith didn't really do anything wrong (I specifically avoid the small things that perhaps could have maybe made some small difference).  We had good luck and then we had bad luck.  I will never be the same now that he is gone, but I'm mostly the same person I've always been.  This sucks, but spending months or years just swimming in the suckiness of it seems so wrong.

I try to remember

I try to remember my life a year ago, when I had no idea.  I try to remember when I knew this would be my life.  I try to count how many days passed between the knowing and the acceptance.  I try to remember the bad times, because they are just as important.  I try to remember the nondescript times, because those are the ones that will quickly be lost.

A few weeks before he died, I was looking at some of our pictures from our first summer, our Prague summer.  I realized that the details had already faded.  I cried.  "I will lose these days without you. What will I do without you to help me remember?"  I was looking at the first picture ever taken of us.  I thought a different picture was our first one, but it turns out I'd been wrong.  The little numbers on the back proved that this photo in my hands was our first.  We had never thought about it that way because Keith's eyes were closed, so it was never printed or framed.  Keith went through the pictures with me "Don't you remember..."? he said.  And he told me, again, the stories of those days.  Of the hikes and the chickens.  But already I've forgotten.  Even as I tried to concentrate, I was forgetting.  I try to remember hundreds of ordinary days.  But they are already gone.

When did I know?  I can't even remember that.  I didn't know when I stood in the kitchen and he told me it was cancer.  I didn't know as the clock ticked towards 2012 and for the first time in my life I tried to drag the minutes backward, tried to undo the ticking. I think it was when we watched a doctor look at a PET scan and say "oh no." But maybe it wasn't until I sat on a couch and Keith told me that the Oncologist had been blunt. "This is what will get you."

Gone

K died today at 12:30.  At our last appointment, the doctor told us we were losing.  That we had weeks.  We could have done some chemo right then, but the hope was that if we stopped Tarceva, his liver might bounce back a little by the end of the long weekend.  Friday and Saturday he felt better.  We worked on taking leave from work and spent time together.  Sunday our friend came over and did video interviews with him, so that our son could feel like K was a real person.  After that, we were going to lie down for a nap.  K changed his shirt, and I noticed his belly was purple.  I hemmed and hawed, but decided to take him to the ER.  While we were there, he became altered, would fall asleep in the middle of a word.  They wanted to admit him but he said no, and I took him home.  Monday was a holiday and I suffered through it, terrified he would die at any moment and me with no one to call.  I also was mad that he hadn't gotten around to writing me or our son a letter. I kept trying to get him to write one.  He got more and more upset.

Tuesday morning I told him our appointment had been moved to earlier.  I took him to the cancer center and begged for someone to see him.  I thought maybe someone he trusted could give him guidance.  Paula, his nurse, suggested we go to the ER, she said high ammonia levels were causing the confusion, and that could be treated.  I never got him back though.  He remained lost to me, and angry with me.  Although he did kiss me on the forehead in a gesture laden with sweetness and what I assume was goodbye.

I want to forget those last few days at home with hospice.  I want to forget his moans of pain.  I want to forget holding him while he died because I didn't think he should be alone.  I want to forget the several nights I asked for his death to come more quickly.  I want to forget the horrible things he said to me when he was confused and thought he was fine.  I want to forget that I practically begged him to hurry up and die so that I wouldn't have to watch anymore. I want to forget that he wasn't ready, and that his heart kept beating long minutes after he took his last breath.  Please can I forget?

Where are you?  I miss you.  Please come back.

Fasting

He won't eat.  He keeps throwing up and he is tired, and he says his stomach feels "tight."  I fantasize about forcing open his jaws and pouring smoothies into his throat by using a funnel.  I wonder if I can get him to drink something in his sleep.  I buy yogurt and soup and watermelon.  I eat what he won't eat.  I eat my pain.  I eat my stress.  If I eat, maybe he will remember to.  I wonder when the last time we had a somewhat normal meal was, was it two weeks ago?  But even that meal wasn't normal.

I can't make him eat.  Even my nagging has gone too far.  But I can't bear watching him waste away.  I can't bear this.

Back to abnormal

I'm back from a business trip, and it is like returning to a nightmare.  I hadn't recognized how draining and stressful the daily life with cancer was.  It was just normal.  And after spending 5 days away from it I resent going back to it.  The grief of every day is exhausting.  My frustration with everything and everyone is exhausting.  I cried last night because I was looking at old pictures, and I could not remember the days they represented.  So many days, so many memories that I have failed to keep.

To make it worse, K is worse.  He finished up some radiation while I was gone, and he is exhausted.  The Tarceva is making him nauseous, so he has to be on Zofran again.  He has lost more weight.  His eyes are yellower.  He said that his blood number were moving in the right direction, but it seems like our life is moving in the wrong one.

When he first started Tarceva, he went into the hospital because his liver was starting to fail.  It turned out he was on too many drugs that clear through the liver.  He got on a much better pain management regimen, and that next week was amazing.  He played with our son, he had a lot of mental energy.  We booked our trip to Tahiti and made other plans for the future.

The contrast is scaring me.  I'm extremely concerned that we are acting like we have months and months but we actually only have weeks.

I told my work that I can't travel again.  I hate that I must submit to this.  But I can't have these events hanging over me.  The last two times K was in the hospital right before them, I can't be counted on.  Eventually cancer will take everything, even my job.

Just take it already

The oncologist went to bat for K with the insurance company, and performed a small miracle of sorts.  She got approval for the mega-expensive Tarceva drug.  This is a biological drug, it works on the DNA of some cancers and stops them from over-replicating.  There has been basically no hard evidence that it is effective against the cancer we are fighting.  So while the consensus was that he should try it, I honestly didn't think it would come to be.

But the prescription has been sitting at the pharmacy for almost a week.  Why? K doesn't want to change anything right now.  Doesn't want to tackle a new drug, doesn't want to deal with the ugly acne rash that almost always goes along with this drug.  On the one hand, I understand.  But I'm watching this tumor on the side of his face grow larger and larger over the course of a few weeks. Or maybe it isn't, maybe it is only growing larger in my mind.  And I just want him to take the damn drug.  Take it now.  The sooner we know if it works, the sooner he can stop.

The Beginning of the End

I want to get a first post up quickly, but there is so much to cover...

I started this blog as a way to pour my pain and fear out into the internet.  I've just turned 35, I have a son who is not yet two, and my husband has terminal cancer.

I used to think we were lucky.  So many people die suddenly in tragic accidents and things are left unsaid, no one is prepared.  But it has been over six months of this knowing, of this preparation, of treatment and caregiving.   And there's a point where this way just starts to look like torture.

Not that I want the torture to end.  This is awful, but what I dread the most is after.  I read the blogs of widows and two years later they are still depressed and grieving.