Saturday, May 24, 2014

You ask me to be strong again, been waiting out here for a while

My life right now is small, and dark, and quiet, and sad.

We've got Jay under hospice care, as the NIH treatment did not work. He is so weak that he sleeps almost all the time, and barely eats, and barely speaks, and gets exhausted from a simple conversation.

My heart is breaking.

Sadder still is the fact that his mind is sharp under all the fatigue and drugs and whatever else is going on in his body.  He reminds me of things I've forgotten, makes connections I would never have seen, just as if everything were normal.

Except that his voice is strained and small.

His voice was never meant to be small. It was meant to reverberate off the walls of the world, to be heard forever at loud, joyous volume.

Yet here we are.

The curtains are drawn in the house, in deference both to his antibiotic-driven UV sensitivity and to how easily he gets overwhelmed by light and motion.  We speak in soft voices, so as not to overwhelm him with our presence.  It's mostly me and him, with visitors usually meaning a respite break for me or a hospice care visit.

I am naturally focusing on this day, this moment, what needs to be done now. Luckily I have others focusing on what comes next, what else needs to be done.  I'm consumed by the rounds of sleep and water and bathroom breaks and pills and what little liquid nutrition we can get into him.

My heart breaks a little more every day, but honestly I'm in a better mental state now that we know what we're dealing with. I am very good at ambiguity, but the ambiguity of his treatment situation was driving me around the bend. Now we know what we're up against, and I can work with that.

Even though the ending is just that - a permanent ending.

I keep playing that nasty game of "one year ago", remembering what our lives were like a year ago, two years ago.  Remembering Jay at his most vital, in love with life.

And here we are.


  1. Sending you and Jay light, and strength, and love.

  2. I think of you and Jay every day. Much candlelight and love. xoxoxoxo

  3. Wishing you as much strength as you can muster and Jay as much comfort as possible. As much as the endgame tears at us, I am glad that you had some time together. That is not nothing in a world with a whole lot of nothing spinning through it.

  4. every minute is this minute, every hour is this hour, every day is today. Hold it, breathe, and love. It will carry you through. Much much love <3

  5. God bless you...praying for strength and peace for everyone.

  6. I'm very sorry for your heartbreak.

  7. Lisa, you have the strength to do this. Sending you thoughts and prayers.

  8. So sorry to hear this. I wish you both a peaceful passing and wonderful memories of the time you have had. Nobody can ever take them away from you.

  9. I can relate to a lot of what you've said here, having experienced a lot of this recently. My heart goes out to you and Jay, and I'd be glad to return the love and care you and Jay provided to me when I experienced much of what you are going through.

  10. Coming late to thiese updates. I am a tonsil cancer survivor (18 months and counting) who had a GI feeding tube for6 months during treatment (ie, directly into stomach). Used zofran daily with it, too. Doesn't sound like Jay has one. Just wondered if it had been suggested? Life saver for me (lost 50 lbs even with it, but I had it to spare).

  11. Hey, Lisa - I don't know you. I didn't know Jay, except as a reader of his blog. I *do* have sort of some idea of what you're going through, having just supported my mom through the loss of my dad. And that being so, I couldn't help but reach out to say something. There are comments all over my corner of the internet today about Jay, but I just wanted to say that from what I've seen, you have been staunch and amazing through all of this. It's hard to be the partner of someone who is larger than life; maybe it's harder when he's larger than death. You are in my thoughts - not just him, but YOU. Take care of yourself.