The right decision...

at the right time.

A and I went to the ER on Monday because I was breathing heavily; we were afraid the increasing difficulty might be due to a common, and dangerous, side-effect of Yervoy. They ran lots of tests for breathing (which of course was better while we were there), and found nothing. They also gave IV morphine for knee pain. (I have a pathologically fractured left tibia—meaning that mets are weakening my bones. I was also using an inadequate brace.) The morphine had worn off by the time we got home, but no one had taken any new films of the injury.

So on Tuesday morning, I was back in pain again and we didn’t have any real solutions. A called 911 for my labored breathing and increased pain in my left knee. I’d awakened that morning on the floor, rolling around, trying to get up and go to the bathroom by myself. I clearly wasn’t fully awake; I was screaming in pain, and the brace I was using wouldn’t protect me anymore. (I normally summon her, either by calling out or with the bicycle horn, when I need help getting to the bathroom in the night.) I was stoned on legal painkillers, but not stoned enough. A called the local ambulance, which could have taken me to the local hospital that contracts with Kaiser. But the drivers knew the ER staff had never seen what I had; I remember one saying I would “scare them.” (Not with my degree of disorientation; this is Stockton, CA. But my level of disease would have been a new challenge to them.) So the ambulance drivers helped get me into her car, and she drove me to the Kaiser hospital in Sac.

They took blood samples, and new images of my leg—we were insisting on a solution for the pain. They gave me a new, more stable clamshell cast, which I can remove to bathe. What matters most in my memory, and to my present reality, is the conversation with the ER doc. She came to my bed; A was sitting on the other side of me. I had just taken my first infusion of Yervoy the previous Friday. I’d never felt sure of it. I honestly felt more pressured into it by my doctor, than willing to stay in the fight myself. A and I have always been on the same page. I was afraid it wouldn’t work; I was afraid it would only work a little. I’d take baths and watch the tumors grow; I’d hear my own Darth Vader breathing, and feel some ground slip underneath me.

This doctor, God bless her, gave us both permission to admit that. I must have said something about the pain, frustration, and uncertainty I was in. She answered, “How committed are you to chemo?”

A and I looked at each other, and we both teared up. We knew. And it was okay. I looked back at the doctor. I knew the words were mine to say: “Not in our hearts, really.” She, God bless her, cried with us. And she got us connected with a palliative care doctor, who is working with us until he can get us connected with hospice.

This is the care I need. This is the care I finally had the readiness, and the courage, to ask for. I’ve been fighting for three years. That’s enough. Just saying, “I want hospice,” gives me so much peace. I don’t need to fight to the bitter end. I don’t need to be a warrior anymore. I can let go as my body wants to, into as much comfort as possible.

My warrior friends, and my cheerleader friends, will be sad for me. I’m sorry. And 40 does feel shockingly young. I would have loved to have been cured from this, to come back and live my new life with everything I’ve learned. But when I asked to see my most recent PET image, and it looked like a Jackson Pollack print of my upper body, that was enough. I don’t need to stare steel-eyed against all my invaded organs. I already see a breastplate of tumors when I take off my shirt (seriously! Almost like medallions all along my clavicle); feel them just under sea level when I touch my upper arms and legs. I know what’s inside me, and I know how tenacious it is. My oncologist had told me that Yervoy was basically my last, best hope. I could have exploded when the ER doc said she’d asked him what the realistic chances were and he’d agreed, “two months, best guess.” Yeah, they want to give us hope. But hope isn’t bread. And a “hope” that leaves me in misery because I don’t know how or when to let go (it isn’t “giving up”) is misleading. Reaching for the next straw until the offerer’s hand falls empty is not the way to ease into the awareness that you’re dying. And that it’s okay to die. All bodies do.

Are there things I’d have loved to do, and to keep doing? Of course, yes. But it’s time to ease into peaceful letting go. It’s time to pass the work I was doing, on to others—they already had picked up Safe Ground anyway, and there will be others who will celebrate Eucharist on the street, outside, at the river, until homeless people feel welcome in the churches. The ministry of welcoming all people into the kindom of God will constantly expand, until every soul is taken up into it. What I lose by dying soon, is time I love with friends on earth who love me. We will find that, as one friend says, on this side of the river and the other.

I will want visitors. All who want to see me, who know how to contact us, please do. If you don’t know where we are, just ask. (My e-mail address is in my profile; A's is in the previous post.  We're both on Facebook.)  I don’t have the endurance for long goodbyes, and again I honestly don’t know how much time I have here. Give time if you can; love me and us any way that you can. A and I both know how much you support us. Know that we love you.

We want to keep me at home as long as we can.  We won't move me until we need to.

Meanwhile, I’ll write as I can. What I know about my self-expression right now: Expect memory recall that’s alternately not-me fuzzy and freakishly clear, and expect honest emotions. A will write for us both, when and if I can’t. We both appreciate your friendship more than we can say.

Kirstin