I know I haven’t checked in and I apologize. Michael has had a very down week and several complications. When he’s having these weeks, I don’t get the daily smile or “I love you”‘s and it still surprises me that after 9 months of this abnormalcy, I still miss him so when he’s completely out of it.

After two weeks of no-Michael, I was really beginning to feel more than broken-hearted. Just starting to feel as if I was unable to handle the inability to hear him and see him and have him see me. When the tumors are very active he looks at me through hazy, glassy eyes, almost looking as if he wonders who I am. There is no response and internally I panic that the day will come when he will not know me. When he is “out of it” I feel so lost and alone. Like I’m not sure what I should be doing.

One day I was sitting there and every time he came to he seemed to not recognize me. I would speak to him and he wouldn’t respond. I would try to feed him and he wouldn’t eat. I felt as if my Michael was just slowly disappearing and I couldn’t reach him any more.

I went to the store that night and when I pushed my cart into the check-out line, the young cashier asked me how I was and all I could think of was: “my heart is broken. I’m in extreme emotional pain and I want to run out in the parking lot and scream and scream.” But I just nodded at her and mouthed “fine.” No words actually came out.

But I tried to put my rising panic aside and deal with his increasing medical issues. Yesterday I was very grumpy with hospice and frustrated by the lack of action on their part. So I made some decisions myself and changed a few things around.

Today, it seems like my changes had an impact. This afternoon Michael abruptly sat straight up, asked for something to eat and told my caregiver that he knows I have his back. He obviously could hear the discussions yesterday and my frustration. I sat holding his hand and for the first time in two weeks, he held mine back.

At one point my caregiver said to him, “I’ve seen so many families just go along with the doctors and nurses. Your wife thinks about things and makes her own decisions. You are very lucky.” Michael winked at me and said, “I know it.” I teased him, “Yeah you once told me I was high maintenance.” He said, “I was obviously wrong” and he laughed a bit.

I breathe a sigh of relief when he comes back, but it’s a small taste of what I want. I want him to get out of that bed and just be himself again.

I can’t even believe that after all this time my heart still screams for him to get up, for all of this to be a bad dream, for life to go back to what it once was. I can’t believe that I have so much trouble moving forward. I can’t ever figure out if it’s worse when he’s gone or when he’s here. No matter what it is, I want more.

I can’t believe that I cry as much and as hard as I do. I can’t believe that I am still such a wreck so much of the time. I probably don’t look like it on the outside, but on the inside I’m in agony.

When Michael and I were first married, we watched this Hume Cronyn, Jessica Tandy movie called Dances With the White Dog because we both loved them so. I have no idea why but when it was over, I ran into the bathroom and sobbed from the bottom of my heart. I’ve never been as affected by a movie in all my life. I cried and cried and couldn’t stop crying. Michael knocked on the bathroom door to see if I was okay. I wailed that I was. And I just cried and cried. I have no idea why.

Michael seemed a little nervous about trying to comfort me, he had never seen me like that. He was always very intuitive about when to comfort me and when to leave me alone when I was sad. But that night he seemed a bit unsure. I gathered from his demeanor that I could talk about it if I wanted to but I really had nothing to talk about. I remember crawling into bed next to him and him just holding me. No words were exchanged; no explanations ever given. It was like that with us.

This past week I ordered Dances With The White Dog. I told my daughter I was going to watch it and most likely have to be institutionalized afterwards. She offered to watch it with me.

It came today and as I read the back of the DVD case I started to cry. My daughter went “aw” and rubbed my arm and seemed unsure what else to do. I don’t think I can watch the movie any time soon.

As my reaction to seeing the movie the first time was surprising to me, I get surprised each day that I feel as bad as I really feel. I cannot seem to wrap my brain around the enormity of the loss of Michael. His steady presence and unwavering appreciation for me and all that I am and all that I do. I don’t think anyone else has ever been quite the fan of me that he is.

When he popped back into our world today, he did so just to give me praise and to let me know he knows what I’m doing. Somehow I want it to be enough to make it all better. To make this all go away. I’m horribly frustrated that it’s not.

I still think about calling around to see if there is something they can do. He’s outlived his prognosis and I think that perhaps the doctors have been wrong. I fear that if I start pursuing treament again, they will say, “Well we probably could have helped you two months ago but now it’s too late.” I get into the thought that I should have more chemotherapy and radiation done, but the effects are brutal. I never know if I’m living in fantasy or if there exists some small hope that there is more I can do.

I simply have no idea.

Advertisements