We finally get the call to come in around 5 p.m., so we grab some food to go and hit the road, right into rush hour traffic heading east on the 10. We're late now but just roll with it, figuring at this point we'll get there when we get there.
We wait in the lobby for someone to come out for us. It takes a while, there's a shift change for the nurses and so we wait some more. My eye is drawn to the lone painting on the wall, the benefactors of this waiting area getting their Medici moment.
It's not the work of a master, and we laugh wondering, "What's that guy doing with his left hand?" What an odd pose.
They call us in, and we walk for miles through unfamiliar hallways in this maze of a facility. It's feels like we're entering an underground catacomb (is that redundant?). It feels like a bunker, the place where battles are fought. It's empty, quiet, passing room after room, most of them empty seemingly in spite of all our delays, some you can see the legs of someone in bed, the TV on. We're led into the very last room at the end of the hall. Your basic hospital room. We both just stand there, bags over our shoulders, not sure what to do. C has been talking about how aware he is that now is when the tough part starts, and it starts here. It just feels like the room is filled with ghosts.
Before we settle they decide to move us to another room. I'm glad to go, I have no idea why.
We watch the Lakers game on TV, the nurses come and go, eventually his nurse begins putting the needles into the catheter. He has a dual port which allows him to get two lines of drugs at the same time. The first needle goes in fine, but the second one hurts like hell. He grabs the rails of the bed and grimaces - it's hard to watch. Being new to this we don't know if something is wrong, but the nurse uses a syringe in the line and draws blood from that port to show the needle's in the right place. C tells me it felt like the needle was just being jammed right into his chest.
We have to wait for the actual drugs to come from wherever they come from, so we get back to the game, checking email, etc. The Suns are making a go of it in the final seconds but the nurses arrive with the big plastic bags of IV solutions and hoses, all prepped by someone somewhere ready to use, and we miss the winning basket. It's weird, the nurses are there ready to get this horror started, and he and I both have one eye on the game. But quickly we lose focus, address the job at hand, and look up only to see the Laker hug-fest. Oh well, we missed it.
They unpack and unwrap and get all this medicine lined up on a cart. I keep thinking how much trash must come out of these places, since I'm sure all this stuff is single use. I guess it's not the place to to worry about carbon footprints. It's odd how in the midst of drama your mind still chugs along with the usual internal dialog.
One nurse reads off the information on the IV bags, another confirms that information on the doctor's order. No place for mistakes. They start him on some pre-meds that will help him relax and sleep. C begins to drift off, I watch Year One with the sound off. Around 11 o'clock the actual chemo infusion begins. It's so silent, no sign of what is happening now except for the tiny drip... drip... drip up in the IV rack and intermittent beeps from the machine that controls the flow.
This is happening now, it's real. These chemicals are sliding through these tubes and into his body, chemicals selected for their ability to seek out particularly active cell growth (which is how they identify the enemy) and kill it. As smart as cancer is, as inventive, it does not know this army is coming. I pray it's not up to the fight.
About midnight they start the cyclophosphamide. For some reason that chemo drug scares me - maybe it's just the name, but I know it's hardcore. That bag drains while C sleeps, and the machine beeps - the LED read-out says "INFUSION COMPLETE". It's done.
C is out, and I don't know whether to stay or go. I don't expect much to happen tonight so I figure I'll go home and sleep in my own bed. I told him earlier that I would probably go once this part was finished, and to call me when he woke up, or anytime at all. I gather my bags to go, and stand there, looking at where we are, wondering again how we got here.
I see C has fallen asleep with his glasses on, so I slip them off and set them on the table. He rouses a bit and smiles, I put my hand on his shoulder and say, "I love you." He kind of chuckles through the layers of sleep, and says, "I love you, too," and drifts back to sleep.
I begin to leave, looking back, thinking about the fact that no matter how much we surround him, no matter how much support we give, this is a journey he'll make alone. This fight happens inside, and there's just nothing we can do, but walk beside him, sit beside him, bear witness, let him know he's loved, hold him in the Light. As I walk outside into the night I wonder if I have ever told him I love him before.
There is no one around, the place is desolate. I walk down the middle of the street, the moon is out, I get to go to my car, hop in and go home. I have this guilt, that I'm sure many caregivers have, that we get to go home, that we don't have this thing inside that wants to do us harm.
I question everything, if there's something else I could do, if there's something to be figured out, what are my motives, why will I write this all down in the morning? I don't know.
This whole process seems to peel back layers, slowly removing the layers of life as you knew it - concerns, beliefs, priorities, plans - and they drop away leaving something unfamiliar, some core, something fundamental. At least I hope so. I honestly don't know what is left at the end, since we have just begun. I hope there's something left at the end, since as I drive home part of me feels like life is just a betrayal. Staggering beauty framed by malice. And it's a betrayal I feel like I'm passing on to my dear children - their inheritance. What a malignant gift.
Wow, this entry reminds me so much of Virginia Woolf's To the Lighthouse, especially the passage below, in which the narrator, a mother of several children, contemplates that they have to "grow up and lose it all":
ReplyDelete"She took a look at life, for she had a clear sense of it there, something real, something private, which she shared neither with her children nor with her husband. A sort of transaction went on between them, in which she was on one side, and life was on another, and she was always trying to get the better of it, as it was of her; and sometimes they parleyed (when she sat alone); there were, she remembered, great reconciliation scenes; but for the most part, oddly enough, she must admit that she felt this thing that she called life terrible, hostile, and quick to pounce on you if you gave it a chance. There were eternal problems: suffering; death; the poor. There was always a woman dying of cancer even here. And yet she had said to all these children, You shall go through it all."
Later on in the novel lies one of the beautiful "reconciliation scenes," but I'll make you read it on your own!
Hello,
ReplyDeleteI just came across your blog after getting the link from Karen on facebook. I'm so impressed by your love and commitment as a family -- and by your writing and photography skills. Keep it up and thanks for sharing. I can't properly put into words how very sorry I am and how angry and spooked I am by cancer.
We're praying for you all Jim. Big E
ReplyDeleteThanks all. We'll leave no stone unturned to beat this.
ReplyDeleteJim
ReplyDeleteI don't know what to say but thanks. Your thoughts on getting to go home are pointedly recognizable in my own past experience..sometimes there is no traction...our best efforts a thin veneer of what goes on.
From sunny Waikiki Charlie's experience can stray into something objective and clinical and two-dimensional. Your words and images connect me to Charlie and Team Charlie and things familiar and human and beloved. I appreciate your investment everyday - otherwise my hands are empty.
Empty hands.
Empty hands but linked arms.
Gus
Thanks, Gus. My goal with the blog is to help people reading it focus on what Charlie is going through, which is the point. To help them visualize where he is, which from the comments I get is a valuable thing to people far away or just not in the room. I try to do that as effectively but undramatically as possible, and not make it become about my presentation.
ReplyDeleteAt first I felt uncomfortable about compliments about the blog, since that was not the goal - like I was just capitalizing on a dramatic situation. I hope people take it as it's meant, to help people who care about Charlie be there with him, to hold him in the Light, to Link Arms, and I'll just do my best to stay out of the way. I think of it as "bearing witness", and I'll just roll with however people express their appreciation for that, since I know at the core they are simply moved by what Charlie is going through, and if the blog helps with that it's a good thing.