Honey in the Heart

Today is a big day to keep C in mind. He goes in this morning for an MRI that will determine how the tumor at the center of all the abuse C has endured has fared. It's been a very tough road for him - crushing fatigue, incessant, rolling waves of nausea, hair loss, weight loss - but the anecdotal evidence is that it's been worth it. C can breathe freely through that nostril which must mean something.

So keep him in your thoughts today. This MRI will be used to guide the surgeons that will get the next crack at this interloper. C will find out tomorrow when he meets with Dr. C what that plan will be.

C will also start a second round of irinotecan on Thursday - that's the beast that beat him up over the past couple weeks. Karen is coming into town to cover the first couple days, and David will follow her for the second half of the 5 day round. Then C may try staying at our place for a couple days during what was the worst part the last go-round. Clare and I are getting a break from the driver/advocate task - we kind of maxed out and had to refocus for a bit on other responsibilities, so we're grateful for other family stepping in. When you find yourself in this fight for someone you love, you kind of need to be pried out of your foxhole. So thanks to them for that.

We are also keeping our friend Roger's sister Victoria in mind today as she fights a very fierce case of pneumonia. We're linking arms for her, holding her in the light. Join us sending strength out to "Vic Voc".


There is nothing like being there in the halls of patient care to really see how necessary an advocate is - part driver, part foot soldier. It's tough to communicate how all these little details roll in, at completely random times, in between hours of waiting and wandering, things that would fall through the cracks if there wasn't someone there, someone who isn't at the point of the spear - listening, asking questions, putting one and two together, being a companion.

This weekend has been a rough one. Having someone in the family going through this trial affects everyone, in different ways. Clearly C is taking the physical and existential brunt. No question. And that reality makes it tough for those of us wanting to help to feel we are doing the right thing, doing enough, doing what C wants, feeling we deserve any sense we are going through a trial ourselves - it's never as bad as what C is going through. And it's proven over and over that whatever your inter-personal dynamics are, they will be wrenched to the surface and paraded through everyone's coping process.

It's as if your family is put under a magnifying glass, and amplified, and any sensitive spot poked with a stick. It just all comes out. We've had to step back from how we each might think things should be, take a breath, remember at the end of the day it's all about love, and try to do better the next time. Roles are evolving in our situation as learning curves are traversed and as C deals with the emotional and practical realities of his journey. The "New Normal" turns out to be a moving target. Who knew.

It turns out that despite what Lennon & McCartney said, love is not actually all you need. You need patience, and self-awareness, and generosity, and insight, and a great acceptance of who we each really are.

That's where we are, separating what we thought was happening from what actually is happening. And each of us doing our best to do that with patience, and self-awareness, and generosity, and insight. I guess that's what "love" is. As Max said in Where The Wild Things Are, "It's hard being a family."

Our friend Miriam passed on this Mayan prayer she says as she drives down our street and keeps C in mind:

Long life
Honey in the heart
No evil
13 thank yous

That's what I'm working on as I worry, as I wonder why, as I hope for good news, as I learn about love under less forgiving circumstances, as I try to be the brother I want to be, as I think of this MRI bringing C positive news of success. Not victory, we know that is down the road - just success. That's what we envision, as we try to focus our will to fight where it's helpful, learning to support the brother we love, keeping honey in the heart.