Tuesday, November 26, 2013

Heroines in an ancient film called the flame of the west

Things are really rough for me right now.

The combination of the change in Jay's timeline and my parents' issues are overwhelming enough.

But relationships I thought were simple have become complicated, and relationships that were already complicated have gotten even more so.  There's no smooth path in my life right now. Everything is bumpy, awkward, difficult, and uncomfortable.  I'm being pressed against the abrasive side of the world, scraped along until there's nothing left of me but a bleeding nub.

I'm full of grief and anger.  The anger I can handle, for the most part well (I hope). The medications I'm currently on for anxiety, however, are stopping me from processing the grief.  I can't cry, except in small intervals that don't provide much relief.  I can feel the grief backing up against the dam of the meds, and when it finally breaks, it's going to be ugly.

I'm already full of fear, and this just adds to that load.

I'm realizing how much denial I've been living in, and realizing that for me, living in denial looks a lot like living a normal life. WTF do I do with that?

I have a lot of support from friends and family, without which I would have fallen apart long ago.  Things are so bad for me right now that I'm actually looking forward to going to the coast by myself over the weekend before my birthday, as a time to sort things out a little, to breathe a little, to just sit and watch the ocean and be.  After finding Jay, I never thought I would look forward to alone time, since my whole life before him felt like nothing but alone time.  But here we are.

Here I am, pressed against the reality of the world.

Thursday, November 7, 2013

Home, home, where I wanted to go

Back in Portland for a long weekend.

Family dinner tonight, then Jay's scan in the morning as well as my follow-up for my new anxiety med.  Then dropping Jay off at Orycon and hanging around til dinner time.

Then a relatively quiet weekend at my house while Jay plays at the con.

Then picking Jay up from Orycon to take him to Beaverton for a do at Powell's.

I'm already exhausted just thinking about it all.

Then we're back to Maryland on Tuesday, with a side trip to Rehoboth Beach, DE, because Jay wants to see a beach I love, and we don't have time to go down to the Outer Banks.  The rest of the week will be spent closing out as much of my parents' affairs as we can, followed by social time with friends and local fans.

Can't wait til we're back in Portland for the foreseeable future.

(Yes, I'm stuck on Coldplay's Clocks - I have no idea why, but there you are.)

Monday, November 4, 2013

The lights go out and I can't be saved, tides that I tried to swim against

Remember how I said September sucked? Well, you would think that I would learn from that, and not challenge the universe.  But apparently that lesson didn't sink in, because October was even worse in many ways.

The worst of all of it was having my dad have a stroke while I was in the midst of a cervical cancer scare.  I'm fine, and he's doing remarkably well, but the stress of the two events combined, plus the reality that we had to cancel our trip to England and the guilt I felt over Jay missing that once-in-a-lifetime trip, just about killed me.

OK November, how about we have a complete turn-around, where a month goes smoothly and pleasantly?

And December? Don't even try to piss me off.  You have no idea what you're in for if you try.

Friday, October 4, 2013

You can do a lot in a lifetime if you don't burn out too fast

Today marks my one-year anniversary of moving to Portland.

It seems like both a lot longer than that, and a lot shorter. It feels like I've been here forever, and like I just walked through the door.

So much has happened, from being dropped into the chemo soup the day after I arrived, to Jay's terminal diagnosis, to the success of his current med regime, to living in the 2-month box.

It seems like too much to talk about here, so instead I'll just mention a few things I've learned in my time in Portland:

  • There is endless wonderful food to be had here.  The only things that are missing are really good BBQ and authentic Tex-Mex.  Everything else can be had in abundance, especially what Jay refers to as artisanal junk food.
  • Drivers here are generally endlessly courteous. This includes stopping to let people merge onto bridges when traffic is bad. The first time I was the recipient of this generosity I knew I was home.
  • The weather is a fickle thing, but overall I approve.
  • There's a crazy vibe to this city that energizes me even at my lowest moments.
We're celebrating this momentous occasion with a trip to Crater Lake. Well, we would be going to Crater Lake if the government weren't shut down and thus the national parks weren't shut down, but we'll see what we see in the area anyway.

So much has happened this year.  All I'll say is, Portland, I love you.  And Jay, I love you with all my heart. So very glad to be here with you.

Monday, September 30, 2013

I close my eyes, I just can't sleep

September has almost purely sucked.  I'm quite glad to see the last of it.

The only truly good thing this month has been the results of Jay's last scan.

Don't let the door hit you on the ass on your way out, current month. How odd to be actually looking forward to October, which is a month that historically has been the low point of my year.

Tuesday, September 10, 2013

Sadder still to watch it die, than never to have known it

Been gone a long time, haven't I?   Since my last post, I've attended JayWake, traveled to New Zealand (with accidental Australia thrown in for fun), caught and recovered from the NZ death cold, traveled to San Antonio for Worldcon, and tried to get my life back into some semblance of order.

I'm in a pretty grim place at the moment, as we inch up to Jay's next scan coming up next week. I've never felt the same kind of scan anxiety that Jay does, instead always saving my stress and fear for the oncology consult that comes after.

This time is different, and it's because there's been hope, and I fear something awful to lose it.

I will write more here shortly about all the things that have happened since I posted last, but not today. My heart is too tender for that.

Saturday, July 27, 2013

It's never planned, changes just kinda happen

I've been getting some lovely communication from all over the place.  Thank you all so much for your love and support - it really means a lot.

But a theme has come to light that I want to address.

A number of people are praising me for staying with Jay in his time of need, and while I deeply appreciate the sentiment, there are a lot of assumptions there that I realize I want to talk more about.

I came into Jay's life at a time when he was relatively healthy, but I knew that his cancer wasn't cured, and that his treatment to date had been spectacularly unsuccessful.  I consciously chose to come into his life, knowing what that might mean.

I read every word of his cancer blogging, and every word of his previous girlfriend's cancer blogging. I wanted to be sure that I had the strength to commit to what I was likely to endure with him.  I wanted to know the texture of the emotions that go along with a journey like this.  I already knew I was interested in him, and potentially interested in him in a serious way.  I had no idea whether that interest would be returned or how seriously.  That we've bonded as strongly as we have is a daily miracle to me.

I chose this path with all my heart and all my mind, and to even contemplate walking away from it now would be the basest act of cowardice.

So the short version of this is: praising me for staying with Jay is like praising me for breathing.  I love him beyond reason, and will be here through the bitter end, and beyond.  Nothing but my own end will take me away from him.

Thursday, July 25, 2013

There's little relief, give us reprieve

Finally, there's a little relief and a reprieve.

For those who don't already know it, who haven't heard it being sung from on high: Jay's medication is working.

I can't begin to express my joy.

And I can't even begin to give in to hope.

What I can do is enjoy that I will have Jay for more days than I expected, and to just go on trying to make each of those days the best they can be.

Wednesday, July 24, 2013

It was long after midnight when we got to unconditional love

Many things make a post ...

  • I know I haven't written here in ages.  I slid into depression and am working my way back out of it.  I have had excellent emotional support from too many people to mention. You people rock.
  • Many, many things have been happening on the cancer front, up til now none of them very encouraging.
  • Joy and happiness pop up in the most unexpected places. I am ever grateful.
  • I'm learning more and more about my own limits and about what I want.  Some of that has shown me my limitations in unflattering ways.  I am reminded that as much as I have grown, there is always work to do.
  • Joy sometimes comes in the form of minion swag brought home by loved ones from Comic-Con.
  • Caregiving is exhausting. It is also rewarding, mind-blowing, detail-oriented. The results are worth all the exhaustion.
  • Taking apart the accoutrements of a life is painful and hard.  The part of my soul that loves decluttering is dancing; the part of my soul that feels the loss is grieving.

Friday, June 21, 2013

Dreams of his crash won't pass / Oh, how they all adored him

Feeling very angular today, and very tender. Everything is poking me the wrong way.

One of my favorite bands is playing the Metro Gallery in Baltimore this summer, and that's making me nostalgic for the city I left.

I refilled Jay's pillbox this morning, and it hurt me to think that the physical pain he's in is coming from pills doled out by my hand. Somehow that's different than driving him to the infusion center for other people to inflict meds on him. I know it makes no sense, but it bothers me at a really basic level.

I'm feeling uprooted and displaced. Not quite sure where those feelings are coming from, but they're definitely present.

I'm feeling lost and sad. I know exactly where those feelings are coming from, and they're no surprise, but they do catch me off guard sometimes, and this is one of those days.

Tuesday, June 18, 2013

I'm alright, I tell myself twice in the mirror before I can't go to sleep at night

So my dreams last night involved a chair not unlike Jay's African throne (no kidding) and my precious, irreplaceable jewels having been tossed carelessly on and around the chair.  All were broken in ways that were irreparable.  No need for dream analysis there.  My dream mind is not exactly being subtle at the moment.

The weirder thing was the dream where I was telling Jay about the first dream.  I don't think I've ever had a meta-dream before.

It was very weird to wake up and not be sure whether I had actually told Jay about the dream or not.

Last night was a weird night for sleep, anyway.  I got to sleep about 10 and was awakened at 11:30 by the nocturnal wanderings of a member of the household (no, that is not a euphemism) and didn't get back to sleep until after 1.  Since I get up around 5, and truly need 7-8 hours sleep, I woke up in a fog, pretty useless.

Wondering what tonight's dreamscape will bring.

Monday, June 17, 2013

Cliches and other chatter keep our minds from thinking

Woke up this morning from a night of hideous dreams.  I don't remember any of them, but at one point I woke myself up with the sound of my own whimpering.  I'm still wandering around in a fog, pretty non-functional.

JayCon weekend was wonderful, but exhausting.  It was an interesting contrast to last year's party, where I knew about 4 people and sat off to the side the whole afternoon, except for getting pizza.  This year I probably knew about half the people there, and of the other half, about half of them knew me.  I'm still getting used to this acquaintance/fame by proxy thing, but it's kind of cool.

But this is just another piece of Jay dismantling his life.  It was hard to watch friends who had come from far away say goodbye to him, not knowing if they will ever see him again.  It was even harder to see Jay absorb all this reality.

This was the first time in all of this that I've even begun to grapple with the reality that I will be the widow when Jay goes.  That had simply never occurred to me.  I don't know what I thought my role would be, beyond *grieving*, but the fact that my role would have a name had passed by me completely.  I had a firm grip on the adjective, but had no idea what noun it would be modifying.

All that said, the party was wonderful, and I met so many amazing people.  I'm running out of adjectives.  I sat off and on all day out in the main part of the restaurant with other introverts who were overwhelmed by the noise and number of people in the party room, and had lovely conversations.  The tiki god ceremony was a riot.  The love in the room was profound. The giveaway of interesting things from Jay's basement was fun and funky.  It was a cascade of emotions both deep and ephemeral.

I'm listening incessantly and am utterly earwormed by the Silversun Pickups song "Future Foe Scenarios" (as evidenced by the title of this post).  It seems to hit all my emotional buttons, mashing them down mercilessly in a fat-fingered dialing of noisy catharsis.  (How's that for an image?)

I've got a therapy session on Wednesday after missing two sessions to my therapist's vacation. Should be interesting to see what comes up.

Thursday, June 6, 2013

Never think of never, let this spell last forever

Today is Jay's birthday, which means that we've been together for a year.

This is not actually true.  This is really the anniversary of the day we met in real life for the first time.  But I cheat and call it our anniversary because neither of us knows exactly when we figured out we were a couple, so this date is just easier.  I'm lazy like that.

A lot has changed in this year, more for me than for Jay, I think.  A lot of the change is obvious: I moved cross-country, I'm in a now-no-longer-new committed relationship.  Some of the non-obvious change is a direct result of the obvious changes: I'm a lot more confident being in the world than I can ever remember being in my life.  There was probably a time in my early childhood that I briefly approached the world with the confidence I have now, but I don't remember it, and I can't imagine that it lasted very long.

The biggest change for me is my coming to see myself as strong.  Until I chose to come to JayCon last year and meet Jay, I would not have thought myself strong enough to choose what I have chosen and survive and thrive in the situation I am in.  The simple act of coming to JayCon was far and away more adventurous than anything I'd ever done in my life.

While we were trying to figure out whether we could actually work as a couple, I said to Jay in all seriousness that he had no idea how strong I was.  The irony is, neither did I.

In the year we've been together, Jay has helped me see myself so very clearly, to see all the good and bad that I carry within me.  He has loved me without question, for all the good and for all the bad.  He has brought untold joy into my life.  He has begun to teach me how to live life on fast-forward. Actually, he's taught me a lot about it already, but I'm a slow learner.  Hard to change the habits of a lifetime, but I'm working on it. Trying to keep that forward momentum going.

So happy birthday, my dear, and happy anniversary.  I love you.

Sunday, May 26, 2013

When present tense gets strangled in the woes, made of our future foe scenarios

Today Jay comes home.  This is a profoundly good thing.

Tomorrow he starts the Regorafenib.  Tuesday he has a CT scan, so we have a baseline against which to measure the success of the new drug.  These are both necessary things.

I'm beginning to feel my own version of Jay's The Fear.  In my case, it's a skidding, sliding panic that everything is about to fall down around us.  I'm constantly on the verge of tears. If my life permitted it, I'd be living in a xanax haze to keep the excruciating anxiety at bay.

But life needs to be lived, and things need to be done, so I persevere.

Since the day I met Jay, the work that I've done in my head has been a process of letting go of my own expectations about everything, about things mundane and profound.  Let go, let go let go.

Now I'm finding that I need to find ways to let go of the most basic expectations of this life - that he will be here and healthy and happy on any given day, that I will have the partner who I love so dearly, that anything will be the same.

I came into this relationship as aware as anyone could be of what the consequences of the choice to be here were.  I knew to the core of my being that this love that is so dear to my heart might not have much of a future. I knew that whatever time we have together is worth the cost of the pain at the end.

I knew all these things, I felt them all deeply.  I know all these things, and feel them all deeply.

But now we're down to the wire, and I am afraid.

Let go, let go, let go.

Saturday, May 18, 2013

Am I a part of the cure? Or am I part of the disease?

I don't write much about it here (a little here and here), but I am an addict in (pretty successful) recovery.

This weekend I'm attending the annual retreat for my addiction recovery group, Radiant Recovery.

This weekend is something of a program reset for me, as my food as gotten pretty wonky. My meal timings are off, browns (whole-grains) are almost non-existent, my journal has disappeared.  Only breakfast has remained, the steady rock of my program no matter what.

I haven't started using sugar again, but with the specter of Jay's mortality hanging over me, I can see frighteningly clearly the point where I might start using again.

That I can see going back to the place I've so successfully pulled myself out of scares me. I've been clean for 5 years now, and I don't want to squander that success.

Neither do I want to lose the rest of my life hiding from the pain of Jay's death. I know myself well enough to know I will feel the pull toward that kind of oblivion once he's gone.  That would be true even if my food and my program were picture-perfect.  The desire to drown my grief in my drug of choice and to not have to face the life I will have right after he goes will be strong. Only a program strongly in place and strong emotional support will counteract that urge.

It's been interesting to watch how the cancer journey is inflecting my recovery journey. It's easy for me to get lost in the minutiae of what needs to be done, in all the care that I want to give him. It's so easy for me to forget that I'm not an infinite pool of energy and resources, that I need to take care of myself, that time away from him can be a positive thing, not a bad thing.

For even in all we have to contend with as a couple, as a family, as a tribe, as a community, there is still joy to be had, and I don't want to miss a moment of it.

This weekend is serving as a good reminder of how off my program has been. The simple realization of how much I've missed beans has startled me, and focused me.

Our community's founder says that once we've experienced radiance, our cells never forget the feeling.

My cells are singing with joy and radiance again.

I remember.

Sunday, May 12, 2013

It's hard to rely on my good intentions, when my head's full of things that I can't mention

I am grieving.  If you've been following Jay's blog, you know why.  I can barely think about anything else but what the next few months will bring.

I'm full of fear, and profoundly sad.

Sometimes I do that awful thing of comparing grief, and think that I'm being awfully self-indulgent and selfish to be as grieved as I am.  One of the things I said to Jay early on in our relationship was that I knew my place in it, that I knew that I would never be first in his heart - that place will always be filled by his daughter, and rightly so. And I now realize that as the jenny-come-lately, I have the least to lose of all the people around him.

But there are times in this process where I feel like I'm forgotten (which I know is not true - witness the outpouring of concern and care I received on the announcement of Jay's terminal diagnosis, and continue to recieve) and where I fear I will be left with nothing.  The latter is harder for me to cope with, as I am quite literally the last in line.  I know my place.

I have no place or time to let this grief out, for many reasons. There's often no safe space for the expression of my grief, because of who's around or because of what needs to be done. This is becoming difficult for me.  I'm carrying a burden that even I don't know the size of, and it's just going to get worse as time passes.

I am grieving.

Saturday, April 13, 2013

There was a time when everything we did seemed free

Today, my heart is breaking into little pieces.

I heard on Facebook of the death of a FB Buddhist buddy of mine. I'd never met him, but his writings on Buddhism and addiction touched me, and I'd corresponded with him a bit.  He was a gentle soul, and his passing leaves the world darker.

Following on that, I read Jay's blog post this morning about his current thoughts on his condition.  This did not improve my mood.

Life is so fucking short, and all this is bringing clarity to things that had been murky. Things in my life that seemed troublesome and important are being swept away.  There are many more important things than them now. My focus is so much clearer.

I'm feeling the endings of things, little things that I've taken for granted and never much thought about. Thinking about them now gives me a painful pang in my chest.  Loss, it's all loss.  Sometimes it feels like that's all life is, just a progression of subtraction, til we're left with nothing but the harsh reality of our dying breath.

I now understand, really grok down to the core of my being, why Jay has always been so insistent that I have a place of my own.  For a long time, I thought it was just to give me a place of respite when things got too intense around his illness.  I understand now that it was to give me a place to be once he's gone, so that I'm not hanging around his house like some sort of grieving madwoman, unable to let go of what's lost, weeping on his pillows and wearing his clothing as a way to keep him near me.

So this morning is being spent sitting in bed, weeping and grieving, alternately wishing Jay were here and being utterly glad he's off in Texas enjoying himself.


Friday, April 12, 2013

So do me that favor and tell me the good news first

This is my long-belated, somewhat-abbreviated post about the good parts of our trip to Texas.

We spent a night in Houston, at the home of Jay's aunt & uncle, and then hit the road the next day to go to Austin.

I utterly fell in love with Austin.  It was one of the cities I considered when I was deciding where to move from Baltimore, so that's not totally surprising. I told Jay at one point I was having buyer's remorse over moving to Portland, and that it was a good thing I love him as much as I do, or I might change my mind.  I was mostly kidding, but I felt such a powerful and immediate connection to the energy in Austin.

We ate our body weight in awesome food, stopping at the Salt Lick, the Hula Hut (caution: music), and the Hyde Park Bar & Grill.  Eating at Hula Hut was an item on my bucket list, so check that one off successfully. I was waddling by the time we got back to Houston.

Going back to Houston led us to the not-so-good parts of the Texas trip.  Another post, coming soon.

Saturday, April 6, 2013

In your house I long to be, room by room patiently

I managed to miss the 6-month anniversary of my moving to Portland, which was two days ago.  Time has moved so quickly.

I can barely remember the me who was broken-hearted at the end of 2010 when my marriage ended.

I can barely remember the me who gave herself a year to grieve that broken heart.

I know those women were sad and lonely and feeling lost. I also know those women felt a spark of power come to life as time passed and grief passed more into the shadows.

The woman I am today began to come to life sometime in late 2011.  By the time I came to Portland last June, I was a bright bud.  In the time since then, I have begun to blossom in ways the broken-hearted me of 2010 could not possibly have imagined.

I'm learning to shine brightly, against all the programming of all my life that has taught me that I'm only safe when I'm hidden.

A lot of that shine has come out of hiding because of Jay's deep love for and unstinting support of me.  I started down this path on my own, but the relationship we are building together every day gives me the strength and inspiration to be more than I've ever been, more than I ever thought I could be.

So happy anniversary to me.  And all my thanks to Portland for being such a wonderful place to live, and my deepest gratitude to Jay for being in my life.

Friday, April 5, 2013

My anger is a form of madness, so I'd rather have hope than sadness

I've been processing a lot lately, which has kept me from writing here, not knowing what the outcome of the processing might be.

Therapy has been interesting lately, both stirring up old crap and helping to set it down for good.  Each session is exhausting, but all so far have been productive.  EMDR has been both helpful and daunting.  It's fascinating to watch my brain at work, and to watch it heal itself from old damage and trauma.

All the grief I'd been processing without being fully conscious of it since our Houston trip dumped itself on me in a great shower the Thursday of Norwescon, and left me in an awful emotional state for the rest of the weekend.  It was not a fun time for me, and a lot of it was just my own noise screaming in my ears.  Another EMDR session has helped a lot in quieting the noise, but it remains to be seen whether than quiet is permanent or if I get triggered again.

I still owe a post about our Texas trip, and I will do that this weekend.  It was such a mixed bag, like Norwescon was, that I'm hesitant to talk about it.  But if nothing else, I want to remember what happened, so I can refer back to the events later, so this will be the place to do that.

On the plus side for the week, my new bed got delivered yesterday (pics here), and I'm happy to report that it works just fine. No creaking or other untoward behavior.  And I had a lovely dinner and walk in the gardens with a dear friend this week as well (pics of that here).

Friday, March 15, 2013

High above the weary world, I wait and watch and think of you

More little thoughts:

  • Still recovering from this cold. More an issue of energy right now than anything else - I slept for 10 solid hours last night, and could have gone right on sleeping.
  • Jay comes home today.  I'm so excited to see him.
  • We have houseguests this weekend - what fun that will be!!
  • I started EMDR therapy this week.  We'll see what that brings.
  • I got new glasses this week, which is the first step in the makeover my lovely housemate Nancy is performing on me.  Probably hair next, then who knows? Eventually a new package for this new Lisa.

Tuesday, March 12, 2013

Never took the time to breathe, breathe, breathe

My world has been taken over by a head cold.  I haven't had one in years, and had forgotten the misery of the endless blowing of nose, and coughing, and the tickle in the back of the throat.

I have some things to say about our trip to Texas and its aftermath, but not until my head clears a bit and I feel like I can think without my head being stuck in a bubble.

Wednesday, February 27, 2013

Where bobby pins hold angel wings, it's alright

Many disparate things make a post:

  1. Still waiting to hear when we're going to Jay's second opinion consult.  We think we know the schedule, but I will only believe it when the airline tickets have been bought.
  2. I'm finding myself really looking forward to flying with Jay.  My ex and I never managed to get on a plane together in nearly 25 years of marriage.  I'm not a good flier, but Jay is, so that will help.
  3. Finding it very amusing to realize that I'm living in the shadow of a volcano.
  4. Currently working on grappling with the realization that the old tapes that play in my head are really a way of my mind trying to find ground.  This will no doubt become a full blog post at some point, once I have a better sense of what this all means from a psychological and Buddhist perspective.  I'll be curious to see what my therapist has to say today about this.
  5. I'm bummed not to be going to the Wil Wheaton vs. Paul and Storm show in Portland tonight.  Even if nothing else were going on, it's so rare for me to stay up that late.  Still bummed ...
  6. I'm taking a class in my recovery community on veggies.  My housemate the lovely Nancy is introducing me slowly to veggies I didn't think I liked, most notably brussels sprouts.  Between her and this class, I might finally conquer the vegetable world.

Saturday, February 23, 2013

And the sun that calls through the window every morning is a doorway

Spending another weekend with my lovely housemate Nancy.  We're going out glasses shopping for me today, and strategizing what to do with my hair.  I'm currently thinking about a minor haircut, followed by a major color stripe of some variety.  We'll see what we can come up with.

I've also discovered that my bed is trashed.  It groans and creaks every time I roll over, sounding like an old woman trying to stand up from an overstuffed chair on a cold day.  Never mind doing anything more athletic than rolling over.  I can make the bed rock back and forth just with two fingers of one hand on the frame.

So a new bed is in order.

First thing is to get the headboard out of the room and into the garage with all the other furniture to be hauled away.  Then I need to go to Ikea and buy storage bins to replace the drawers that are under the current bed.  Then I can order my new bed online from Ikea, unless I decide to buy a bed from the same place Jay got his.  I know that bed is sturdy enough, so that might be the better choice.

Still unpacking boxes, slowly finding places for everything, slowly ceasing to feel like I'm living in a live-action jigsaw puzzle.

Friday, February 15, 2013

I don't know what in this world is trying to save me

It's been a while since I've posted here.  I've been busy processing the dual realities that we are no longer treating Jay with the expectation of a cure, and that Jay's social life has come back to life in the brief window between his being recovered from surgery and going back on the reduced chemo.

And I'm still processing.  And I'm still not sure what all I'm feeling.  It's all so complex.

Meeting more of his friends in Seattle brought home to me more than anything else has just what's at stake here.  Why that should be the thing out of all the things that should trigger that realization is beyond me to understand.

I'm sad and tired and yet somehow still joyful day to day, because that's how we'll live the rest of this thing, day to day.  One day can be managed, that particular size of container of life and fear and joy and pain and love can be held and coped with and handled.

But I can tell the stress is getting to me, at least a little bit.  Old nervous habits, long ago abandoned, have cropped back up.  I'm doing that thing I used to do in junior high of fiddling with my hair.  I even displaced that over to fiddling with the tassels on my therapist's couch pillows during one session.  I started laughing when I realized what I was doing, and then had to explain it.

My dreams are long and strange, and I forget the content by the time I wake up.  I can remember the emotional texture of them, but nothing more, as if my brain is trying to protect me from content I shouldn't be aware of.

But there is so much love in my life right now, and I feel so blessed for it, so onward I go.

Thursday, January 31, 2013

But the drumbeat strains of the night remain in the rhythm of the new-born day

I'm in a weird place today. This is day 3 of a migraine, which always makes the inside of my head a little strange.  On top of that, Jay & I have been talking at some length about the end of his life, and his current emotional state, and mine, and that is making things even stranger.

Right now, I'm firmly in a state of both anger and "it's not fair".  I know Jay is very much of a mind to avoid the whole "it's not fair" argument, but I can't help being mired in that place a little bit.

As I said to him the other night, it's wholly not fair that I finally find a man I could joyfully spend the rest of my life with, only to find that I only get to spend the rest of his life with him instead.  He pointed out that that's true for all couples, to which I replied, yes, but you're not supposed to know which of you is going first.

And that's part of what's eating at both of us, I think - this is knowledge you're not supposed to have.  We don't yet know the hour of the end of his life, and it's still quite possible I'll die before he does.  Heart attacks and getting hit by buses still happen. But that's not the picture we live in day to day.

So I do my best not to look too far into the future, to stay here in this day and channel my anger and my feeling of being cheated into taking the best care of him I can, so that today is the best we can make it, so there are no regrets at the end about how we could have done better.

There will, of course, be regrets at the end, about all the things we couldn't do, but I don't want any of them to be about things we did that could have been done better.

Tuesday, January 29, 2013

So hang your hopes on rusted-out hinges, take ’em for a ride

So it's been a week since Jay's surgery.  I don't think I've ever been more tired in my life.  Trying to work and take care of him and not worry and worrying anyway and thinking I'm going to screw up the medication schedule and trying to get myself unpacked at the new house so my lovely housemate doesn't have to keep dodging my boxes ...

OK, now I get why I'm tired.

And now we've got the oncology follow-ups to think about, and the results and analysis of the tumor genome sequencing, and the upcoming yet-to-be-definitively-scheduled "second opinion" ...

Trying to keep this all in my head is exhausting.

But in the end, it's all about Jay's life, and I can't complain about that.  Whatever it takes to keep him alive, in good health, and with quality of life, that's what we'll do, right up to the point where he says, no more.

So onward I go, doing everything I can to make sure he has what he needs to heal from surgery, and to be as much of a support to him as I can be through this whole process, no matter where it takes us.

Saturday, January 26, 2013

This is my line, this is eternal, how did I ever end up here?

I now have two homes.  This is a profoundly good thing.

My POD finally got unloaded today, and I unpacked about half a dozen boxes.  My goal is to spend an hour everyday this week unpacking, and hoping to get everything that can be put in place in its place by the end of next weekend.

So that's the home with my housemate and dear friend Nancy.

But as long as Jay is in treatment, I'll be living with him like I have been.  He doesn't need constant care, but he needs enough to keep me there to care for him.  He'll need more care this week, coming home from his surgery and recovery in the hospital.  What kind of care he'll need after that, we'll see after we know how his treatment will progress.  That's a big unknown at the moment.

In the end, I have two homes, two places where people I love live, and where I am loved and welcomed.

This is a good thing.

Friday, January 25, 2013

Take flight, satellite, and drift into space

Exhausting week, with Jay's surgery and his recovery.  I've spent as much time at his side as I could, and he's doing really well.  It's sad to say that he's a professional surgery patient, but his attitude toward his recovery and his knowledge of the processes both before and after surgery make that an accurate statement.

As for me, I'm on the verge of having my things back again.  Tomorrow is moving day.  I feel like I have Schrodinger's belongings.  My POD is parked in the driveway of the new house, but I have no idea what survived the trip and what got broken.

At this point, most of what's in there I could live without, especially the stuff in boxes.  As long as I have my bed, dresser, sofa, and dining table, my essential kitchen stuff, my clothes, and my meditation cushions, I think I would be OK.  Oh and some of my art, like my poppets, my crow art, and my family photos.

Reality will collapse into some determination about the contents of the POD tomorrow afternoon.  Wish me luck.

Monday, January 21, 2013

You come out at night, that's when the energy comes

Jay goes in for surgery tomorrow, and if we're lucky, the mystery of the fourth tumor will be solved.  I'm anxious and worried and not a little bit scared about the whole thing, but this is just one more necessary step in this process.

I'll be keeping watch over him as he recovers, hoping for the best in all of this.

(And for those of you paying attention to the lyrics of the titles, no, I don't consider Jay to be a beautiful, fucked-up man. Beautiful, yes; fucked-up, no. Those lyrics refer to my vision of his cancer, not my vision of him.)

Friday, January 18, 2013

I bring to you this sacrificial offering of virgin ears

Been too busy and distracted to post, so here's some tidbits to keep this thing going:

  • Finally scheduled the POD delivery to the house Nancy & I are renting.  Moving day is coming soon - yay!  It'll be so good to have a home base that has all my stuff in it.
  • Jay's surgery is this coming Tuesday, and to celebrate (or whatever's appropriate), he got his hair cut (scroll down to see the pic).  That's my partner, ladies and gentlemen.
  • I'm getting better at navigating this fair city.  I think this process will accelerate once I'm going places from the new house, and I'm looking forward to learning a new part of town.
  • I've started therapy with a Buddhist-oriented therapist.  So many things to talk about, so many issues to work through.  I have high hopes of gaining some clarity on things that have dogged me for years.
  • This weekend is bringing weather I've never experienced before.  We're under an air stagnation advisory through Tuesday.

Saturday, January 5, 2013

Who'll hear the sound of grieving

Bad cancer news.  Might not be as bad as we think, but I don't see how.  Am feeling low and helpless and sad.  I purely hate not being able to do anything to help Jay, but there it is.  Just keep living, and moving on.