We have the results of the MRI which shows that the tumor is slightly larger than it was in September. It had shrunk after radiation and chemo but now it’s growing again. But we don’t know when it started growing. If it started growing in January, it’s growing slowly. If it started growing again last week, its growing fast. So we don’t know.

Michael’s new energy has him asking a lot of questions. For a long time it seemed as if he had either given up or didn’t care. Now he’s asking about the MRI, asking what else he can do, saying that he wants to go on chemotherapy again. He said, this week, for the first time since November, “I don’t want to be sick anymore.” But he is saying it not like someone who is giving up but someone who is getting a second wind and renewed dedication to getting well.

I can and would give him anything but I can’t give him whatever would stop this tumor from growing. I’m torn in so many ways. Every thing we’ve done to buy him time seems selfish to me sometimes. My kids have told me, on different occasions, that the “well Michael” wouldn’t want to live like this. I don’t know what I’m supposed to do with that sentiment. I snapped at my son one day and said, “What do you want me to do? Take him out in the yard and shoot him?” I really don’t know what I’m supposed to do with that.

It’s not like I don’t know that he wouldn’t want to live like this. What cancer patient does? But Michael was so independent and hated dependency so very much. When he first emerged from his coma in September he didn’t want the kids feeding him. When he started to be incontinent he didn’t want to wear adult diapers. Over time he’s allowed the kids to help him more and he’s wearing the diapers. Over time he’s gotten more resigned to it but I know and the kids know that the “well Michael” would sooner pitch himself off the roof than have any of this happening.

Even getting him a new caretaker who has infused new vitality into him makes me doubt myself. Did I give him just enough energy to hate his sickness? He seemed to have been resigned to where he was and wasn’t fighting to get well anymore. I’m wondering if I’m doing more harm than good while trying to do good. I simply don’t know.

Michael’s care and future rests in my hands and that’s a horrible revelation because sometimes I’m not sure what I’m doing. I don’t know if I pushed the radiation and chemotherapy to keep him around for me or if I really think this is what he wants. He fades in and out of rationality. Sometimes he’s the vintage Michael and sharp as a tack. Other times he’s not quite here and other times (very seldom) he’s talking complete nonsense. I live for the vintage Michael and love the times we have them. Those times seem to come out of the blue. And I love it and it makes me smile and I wonder if I will ever be able to say, “Okay fine…take those times away from me.”

He was vintage Michael this morning kidding around with me and asking for a spin around the house in the wheelchair. Then he was tired and wanted to go back to bed. And he couldn’t keep his eyes open to watch the NASCAR pregame show. Something he lived for before. He was gone as fast as he had been there. And it made me sad that he was here and gone so abruptly.

And I wonder about the quality of life and the quantity of life. And the decisions I’ve made and continue to make. Sometimes I feel like I’m accepting how it is and how it will be and other times I’m railing against the winds and insisting that we do this thing or that thing to give him more time.

Who is the time for? Me or him? Sometimes I wonder if I loved him, really loved him, would I just let him go? Would I forget about dragging him to MRIs and talking to doctors and stop insisting that the caregivers get him up every day and exercise his legs so he gets stronger? What exactly am I doing and who am I doing it for?

I told a friend of mine that I know that Michael would be fine with me keeping him around and trying to make him stronger just for me. He’d be fine that I was being selfish. If he thought he could save me pain by sticking around, even in a pale imitation of his former self, he would. So does that mean he loves me more than I love him? I have no idea. And if he could be unselfish by letting me drag this out for as long as possible, why can’t I be unselfish by not dragging it out?

He’s not in pain because if he was, that would definitely make my decision for me. I wouldn’t allow him to be in pain. If he had to go back to the hospital, a place he hates, I would know what to do and not let him go back. But he’s not in pain and not in the hospital, so I am thoroughly confused now that we’re working so hard to get him stronger in the face of test results that are saying the tumors are moving again. What the hell am I doing?

I don’t know. It’s been almost seven months since I was told his prognosis was three to six months. Seven months to prepare for losing him and I honestly don’t think I am any more prepared than I was in September. And I don’t know how this lack of preparation is fueling what I’m doing.

I just want to do what is best for him but I also have a selfish desire to keep him around for as long as I can. And what does Michael want? It seems to change every day. I know he wants to get well and I can’t give him that. Sometimes he wants to be stronger and other times he’s content to stay in bed and sleep. And sometimes he is the very lucid, with it Michael and other days his brain is not keeping pace.

I’m living in a very grey world where I’m not sure which way to go.





And no one can really tell me. No one.