“One more game?” I asked of my bff, who really needed to go make dinner by 5:30. Our happy hours are short and to the point.
Mike had just had another “wobbly” moment, I saw the stacked Tupperware waiting in the hallway to be put under the house when the deck access unfreezes swing wildly and had run to him. It was the first time Jake saw it. It is as I describe it, like watching a marionette’s strings being randomly pulled, rather than a moment of dizziness. His legs twitch, he looks like he is misfiring on a brain-level.
I put Mike to bed, feeling ok, the maybe 15 or 16 second episode having passed.
“Nah, I have to go make my dinner,” she said.
“Its just,” I said, misting slightly. “playing yahtzee and having happy hour a couple times with you, or this,” I said tapping the laptop, “doing the radio show, writing, those are the ONLY times I not-think about everything I have to think about. The rest of my day is all that. Nothing BUT that. Its the only time I can rest my worries for a minute, and be focused on something else.”
She brushed the dice away, and said, “I’m here for you. You have to talk about it. You never talk about it.” I think have have cried about this 3 times since last year in front of Linda since it began. Each time, copious alcohol was involved. I’ve got this. Its my burden. Its not yours, hers, or anyone else’s, and by gahd; the LAST thing I want to do is make my escape hatches part of the drama….
And she is where I go to NOT-THINK.
I was proven wrong.
It helped, finally talking about it.
We have been dodging phone calls lately. How do you, with good conscience ruin someone’s day with an answer saying how horrible things have become?
I’m back, I left in the middle of the last paragraph, ran to him as surely as if he had called me, but he did not. We are one that way… I heard him, without him saying a word. I knew he needed me and ran.
I just almost called the ambulance. I came in and he was lying on the bed kind of twitching. He wouldn’t let me, responded in a few seconds. when I came in. He said he was coughing hard and just ran out of air. It was another of the short episodes that started Wednesday.
I talked him through the breathing processes I know until his color returned. I fear its spread to his brain. He had his CAT Friday, and I begged him to call the Dr, or tell the tech that he needed more than a torso scan, he needed a total scan, but he wouldn’t. I have no medical power of attorney, I can’t force him. He was all “If the Dr thinks I need a brain scan he’ll order one. But after tomorrow? We pay. Insurance is done, and a CAT is like 20 grand. Why not try, at least try to get it all done at once.
Linda sees it, he is hacking worse than ever, his color is gray, his aura ungodly bad.
After his last chemo? He vacuumed once, shoveled a little once, actually made his own breakfast and lunch. Got UP, off the couch or bed, and I let myself believe the story of remission.
You see, when you are handed a death sentence prognosis for your husband, the love of your life? You begin to deal with the idea, however you have to. At least the practical. Ok, we have this time left, and I’m going to make it the best for him I possibly can.
But they did the unthinkable. Gave me hope again.
They said remission, and said treatment was done.
I began to live again.
I began to breathe again.
Then, after the last bout of pneumonia? He has gotten steadily worse. I had put away all those things, like hospice, cremation, his last wishes, and believed he would accompany me forever, our lives given a second chance.
So what the fuck is this?
I am scared to death, Jake is, Mike is.
Jake was off 5 days of school, 2 to flu, one to holiday, one to snow day…. and for the first time since grade school, he came home and said, “You may want to call my teacher, I was a pain today.” I did, he did silly things like making jokes and playing, and running in the hall. No big. All fun, but inappropriate anyway. When asked why? He said, besides being cooped up so long, he was around his Dad enough to think he is dying, and sometimes you laugh not to cry.
What the FUCK do I do with that?
What the FUCK do I tell him?
I’ve been so tough forever. Everyone I know thinks I’m some rock.
My man is being tortured, and in pain, and my son is being given a childhood that will leave scars forever on his life, no matter how I try to make it OK.
We are broke, I am exhausted, and I have to just keep being what I am. the stone pillar holding up their worlds.
There is a Sumo wrestler sitting on my chest while I hold him, rock him. tell him to find the zen candle and breathe with him to slow th coughing attacks that take his breath and leave him gasping. There are daggers in my eyes, while I tell him its okay, and run my hands over the back I love, knowing my eyes betray me as his body withers. There is a vice squeezing my heart when he apologizes for putting us through this, and I say it’s nothing, I just want him better. There are anchors of lead on my soul when I say it will all be ok.
He hasn’t even raised the energy to bitch at me about anything in weeks. Jesus Fucking Christ… that is the worst. He must be dying. Its a playful surly most of the time, but when Michael Thomas Gee can’t even work up a tirade about anything? I have no anchor for reality anymore.
I’ll post this, and be fine tomorrow for having vented it. Linda just made it clear – and she’s right.
I have to talk about it sometimes.
This week? He finally agreed to sign up for assistance. Tomorrow that process begins. I cannot tell you how much we both despise that, but I knew it HAD to happen months ago. The coffers are fucking dry, and it was fucking stupid to let it go this far.
But what could I do?
I’m terrified right now. I’m losing my Love. I don’t know how I will take care of my son when I do. There’s no insurance and he’s dying – when they told us he would live. We can’t make the house note, and my inbox is full: DTE, Consumers, Charter, Nextel whatever.
They can suck my ass.
I want my man to live; but if this is a treatable setback, how do we get them to do that with no insurance?
He is gray. He smells like my Dad did before he died. This is how my son will remember him, and his childhood. How fucked is that?
I’m lost and have to be the okay chick for both of them and I’m just NOT.
Linda says I’m amazing. I don’t break down. I rarely cry. I make it look so easy. Jake seems so happy and okay. I pamper Mike. I juggle the schedules and the bills, I do the man-work, the woman-work, and have kept the household running normally for 7 months now.
Maybe, but for most of that I thought there was light at the end of that tunnel.
Now that light is fading, and I don’t know how to breathe anymore.
I just know I will, with or without help…. for people willing to really be there for you when you REALLY need it, are few and far between. And its harder for me, because in reality?
I’d rather be a stone pillar than ask for help.
This is me, and my life. Not yours. No ones, and we all go through loss. The sun will come up tomorrow, and no matter what I’ll survive.
I just want my boys with me on that journey.
I want my man to live.
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how I am…. heh. or suffer the answer.
what this has to do with it, but I think maybe it does.
Take care, Diane…
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They say he has 3 to 6 months left.
Its back, its collapsed his right lung, they are doing a brain scan to see if its there too. They want to operate to drill a hole and stint it open to make him more comfortable, get some air in that side…. and try a last ditch chemo round which could at best, slow it a little. Its already huge, probably 6 times bigger than in November.
and your boys too. My heart weeps as the thought of helplessly watching your love die is the worst thing I can imagine. Go easy on yourself you may be a pillar of strength but you are a caring loving woman, whose living though hell. Nothing I can say will make it better but I hold you in my thoughts with gratitude for the love and passion you bring to all that you care about. Platitudes fly in the face of your pain and reality.