Friday, April 18, 2014

But no one ever tells you that forever feels like home, sitting all alone inside your head

I've been home for just under 48 hours now.

It feels very surreal. I still haven't quite caught up to the fact that I am home, that this is where I live, that this is normal.

Everything feels wrong. My car is wrong, the house is wrong, the bathroom's in the wrong place, I'm forgetting how to get places.

The time we spent in Maryland was so intense that it was like an entire life shrunk down to 6 weeks.

I now fully believe Williams Gibson's theory of jet lag: that it's the soul being far behind the body, waiting to be reeled in to rejoin the whole. I feel like I've left my soul in a box somewhere, and I may never find it again.

I'm a wholly different person than the one who set out on this journey at the beginning of March. I ordered a few things over the course of my stay, things that were delivered here at home, and the things I bought at the beginning of the journey I look at now and wonder why I wanted them. What did that Lisa think these would bring to her life? The now-Lisa is just confused by them.

I am exhaustion incarnate. I'm not sure who I am anymore, or what my purpose is.

Tuesday, April 15, 2014

I let my past go too fast, no time to pause

Today we get our first glimpse at the progress of Jay's treatment in the clinical trial. Even though I know better than to have hope, my heart is still raw with it.

The past couple of weeks have been very hard, as Jay has struggled with his food issues. I've developed related food issues of my own, which have been good in one sense as I'm trying to lose weight, but difficult in another, as I feel like we've both been badly trained around food.

These weeks of difficulty on top of the previous weeks of treatment have worn me down to nothing. My emotions are always at the surface - you don't even have to scratch the surface to get to them. They're just right there, perfectly present.

I'm pinning all my hopes on our flight home tomorrow, even as I know how difficult that will be.  I just want to be home, whatever that brings.

Thursday, April 3, 2014

We are ready for the siege, we are armed up to the teeth

Many little things make a post:

  • Jay & I are on opposite but related trajectories with food these days. He's struggling to get back to a place where eating is natural and normal. Every bite of food may turn into a deadly enemy. I, on the other hand, have gained so much weight through stress eating that I've started doing Weight Watchers again. I've gotten so heavy that all my joints ache; I'm a fine-boned girl, and any weight over 200 lbs is genuinely painful. Jay's having to train his body to accept food; I'm having to train my body to stop accepting food.
  • I'm so homesick I could cry. And sometimes do.
  • While in truth this place of waiting to see if the latest treatment has worked on Jay is no different than any other place of waiting to see, it feels worse. I think that's in part because the lead-up to the treatment itself was so brutal. So this waiting feels many orders of magnitude harder.
  • We've spent more time this year in Maryland than in Oregon.
  • I got a ridiculous thrill when I gave the Ocean City hotelier my Oregon driver's license when we checked in. It's such a silly thing, but it made me feel like a real person.
  • Every time I think I've discovered the limits of possible exhaustion, I push right through and find more levels. I can't remember when I was last this tired. And I cannot fail - right now, I'm Jay's sole support. So I persevere, hoping not to do anything irredeemably stupid.

Sunday, March 23, 2014

Wings are singed like Icarus to fall, what's left is a shadow of it all

So this is the rhythm of my days:

Wake up between 5:00 and 6:00, earlier on work days and later on the weekends. Do my morning stuff and head out for NIH.  If it's a work day, I'm carrying my backpack so I can have both my PC (which I use for work) and my Mac (which I use for life).  If it's a weekend or other non-work day, I just have my purse. I love that my Mac will fit in my purse.

I go through security at NIH, where I have my extended visitor's badge scanned and get let through the patient & visitor's gate. If it's a weekday, I drive up to the Clinical Center (building 10) and let the valet park the car. If it's a weekend, I drive around to the parking garage under the building, submit my car to a security inspection, and park.

Amusing note about Building 10: the half we're in is the Mark O. Hatfield Clinical Research Center. Mark Hatfield was an Oregon Senator. A piece of home.

I take the elevator up to the 3 NW inpatient unit, which is where Jay is staying.  His mom has been doing the night shift (although that will end when she goes home Tuesday), so I say hi to her, and to Jay's dad, if he's arrived before me.  He and I share the day shift.

Then it's a day of doctors and nurses popping in at what seem like (but probably aren't) random intervals.  Meds, both via IV and via pills, are administered. Food is ordered as Jay wants it. Jay goes between sleeping and sitting up to talk and connect. We walk around the ward as often as he can manage it.

On workdays, I'm doing my best to get whatever needs to be done that day done in between caregiving needs, the latter clearly taking precedence.  If I'm on deadline, I'll either stay in the hotel until I'm done and then come in to NIH, or I'll excuse myself to go out to the work carrells that are outside the ward at the atrium.

On non-workdays, I play on my computer or read. Yesterday, I spent the day working to reproduce Jay's cancer email distribution list in my Gmail, which was more of a challenge than I anticipated. Today, I have a Genius Bar appointment, which will take me out of NIH for a while in the late morning.

Lunch is in one of the 3 cafeterias in the building, unless it's a weekend, when there's only one cafeteria open.  The food is decent, but not great.  My joy during the week is the choice between sushi (smoked and cooked [e.g., tempura rolls], nothing raw) and the Austin Grill outpost that works kind of like a Chipotle.

Then, somewhere between 4 and 6, I'll say goodbye to Jay and whoever is still in the room and head out to a quick dinner and then back to the hotel room.  I'm usually utterly exhausted and get to bed early.

And start all over again.

Tuesday, March 18, 2014

We sometimes catch a window, a glimpse of what's beyond

I've been reading (or, more accurately, re-reading) books about grief and loss lately.  These include Wild by Cheryl Strayed, Ghost Rider by Neil Peart, The Year of Magical Thinking by Joan Didion, and Grace and Grit by Ken Wilber.  That last is the only one I haven't finished; it hits far too close to home, and I have to read it in tiny, tiny sips to keep from being overwhelmed.

The one of these that hits me squarely on is The Year of Magical Thinking.  Joan Didion's year was the year after her husband's death; mine has been the past year, holding tenaciously onto every scrap of hope for Jay, having my head pounded into the pavement every time that hope turns out to be misplaced.

Look, I know that I joined my life to that of a dead man.  This is not a surprise. But as they say, there's a difference between knowing the path and walking the path. Knowing intellectually what was going to happen is a very different thing to being hit in the heart over and over and over again.

I love this man beyond reason, as it should be. And when he is gone, whenever that future should occur, I will grieve for a very long time, then slowly pick up my life and move on.  I will survive, because that's what I do.

But holy fuck does the now suck.

I discovered quite by accident a number of years ago that I'm good at grief.  At a time when I truly thought I wasn't good at anything, it was a kind of pointed gift to find that I was good at something.

My dreams these past few nights have been full of loss and promise, of pain and of love, of frustration and of triumph. My subconscious is clearly trying to prepare me for whatever future lies ahead, good, bad, wonderful, awful - whatever.

Right now, I'm just scared, angry, and full of love.

Tuesday, March 4, 2014

Another game of putting things aside, as if we'll come back to them sometime

Lots of catching up to do here, so let's see what I can get done while I'm waiting at the airport for Jay's flight to get in.

We've spent most of this year so far getting Jay ready for the experimental treatment he's going into this week at NIH.  Lots of travel, a bout of surgery and the recovery from it, and waiting waiting waiting.

I want so badly to be able to shut out the rest of life, to simply knuckle down to the things that we need to do to keep going on this treatment path.  But of course life isn't that simple nor is it that cooperative.  So we both continue to juggle with hands that get less deft every day.

Two things that are going on right now are both hard for me to deal with.

The first is the stark reality that Jay is dying, a little bit every day. It's visible now, in his energy levels, in his ability to simply function throughout a day. He's slipping further down that slide to the end of his life.

The second is something I've known for almost a year, and seems laughably obvious in retrospect. Jay & I are experiencing two very different paths in our relationship.  I'm a deeply sentimental person to start with, and am taking that trait along with me through our days.  I do my best to remember the sound of his laughter, the sharp edge of his snark, the beloved sound of his voice, the warmth of his love, the sweetness of his touch.  All of these things I can take with me into the future without him, to hold to my heart as balm once he's gone.

Jay is in the opposite place. He's living very much in the now, because now is all he has. The future has no meaning. He will not be carrying any memories forward once he's gone.  What he has now is all he has.

I remember vividly the moment when this became obvious to me.  It was last May when we were both briefly in Santa Fe, and we met with the friends he was traveling with for a quick snack and a quick hello.  As we sat in the restaurant, I was rubbing his back, and realized that I was trying to memorize how his back felt through his aloha shirt, and also realized that there was no equivalent action for him.

Every day is my stock for the future. Every day is Jay's permanent now.

Through all of the nonsense this month, I've been going through anxiety medication adjustments.  The meds I am currently on shut my emotional processing down completely.  I can feel day-to-day, but I can't process any grief.  I can't cry, even at the few things in the world that are guaranteed to make me cry no matter what.

As Jay comes back into DC, I'm in the process of tapering off this med, which is leaving me ready to burst into endless tears at the drop of a hat.

I fear this will be the way the rest of Jay's life is for me - tears and memories.

Friday, January 17, 2014

Always fighting the storm, afraid to suffer the wound

So many of my conversations these days, both real and virtual, revolve around the concept of acceptance.

So here's my take on the whole acceptance thing.

I know that Jay will die, as everyone I know will die.  On that level, I have perfect acceptance of what's going to happen.

I am also in total denial that this could happen soon.  Even that reality that we're taking him next week into treatment that has only a ghost of a chance of succeeding, and that his tumor growth rate is such that if the treatment doesn't succeed he'll be dead sooner than later, can't penetrate that wall of denial.

I am angry beyond reason to lose the love of my life, even though I knew coming into this that was the most likely, nearly inevitable outcome.

The thought of living the rest of my life without Jay is a gaping wound in my heart and my soul, one which will never fully heal.

And yet ... I live every day in the acceptance that this could be the last good day we have together. I live every day in the acceptance that I will be in his life long after he is gone from it, helping to support his daughter and her mother, hopefully being part of his larger family. I live every day in the full knowledge that we're slowly, piece by piece, taking his life apart, planning for the time he will be gone so that those of us who are left don't have to do that work in grief and pain.

And yet again ... the wall of denial is strong, and it's utterly based in fear.

And I accept that.