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I was up coughing all night still fighting off a cold that I got last week. Luckily Michael has not contracted my cold.

He was up and showered and had breakfast. This was a good sign as he showed no confusion or problems. I struggled to get dressed because I was so tired from coughing all night but I didn’t want to upset his rhythm that he had so I hurried to get us down in the car. When he’s doing well I try to capitalize on it.

We take off for radiation and it is pouring rain. There are times during the drive when it is coming down in torrents. But we keep up cheerful banter in the car and for this, I am grateful.

I stop at a gas station and I pump my gas. I am freezing and it feels so odd to be pumping my own gas. Michael always kept my tank full for me. The past few weeks I’ve had to remind myself to get gas as it’s something I’m not used to. I take out the garbage, take in the groceries, clean the litter boxes, sweep out the garage, pump my own gas and worry about everything and anything. Things I’m not used to doing. Things I would prefer not to do.

As we drive up to the hospital, all the radiation spaces are taken so I park a little bit away. I take Michael’s arm and try to get him to move a bit quicker toward the hospital because the rain is relentless, but he’s still very slow.
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The deterioration that I noticed at the end of last week has continued. Michael seems to be slipping in so many different ways. He seems terribly confused and nods off all the time.

Yet, he’s still the sweetest man he’s always been….when he wakes up after nodding off he looks over and winks at me. When I ask him if he needs anything, he says “No it’s okay hun.” And when I give him something to eat, he says “Everything you make is so good. Thanks.” And his eyes look scared and tired at the same time. And my heart breaks.
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As we drove home around the mountains today we have been noticing these hawks flying over the Hudson…they are magnificent and in a couple of months there will be golden eagles and bald eagles joining them. The leaves are rich with autumn colors and the river is sparkling.

Although this is a longer way to go, we enjoy driving above the river and watching the birds and going over the Bear Mountain Bridge and up through the winding mountain roads. It’s very peaceful.

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This has been a good week so far. Michael is doing more ADL stuff for himself, showering, getting dressed and making his own breakfast (cereal) and getting snacks for himself.

Today we were sitting in the radiology waiting room and we were holding hands, something we’ve started doing again since he’s been sick. He turned to me and said, “I love you dear.” and I said “I love you too.” He said, “Well, if anything this has been a re-bonding experience for us.” I said, “I would have preferred a trip to Italy as a re-bonding experience.”

He started laughing. “Really? A trip to Italy over a brain tumor? You’re so silly!” and we both started laughing.

I think the nurses thought we were crazy. But it’s a good kind of crazy.

Today was a good day. We were up and out on time and stopped at a diner on the way back.

We had a happy, humorous lunch. It was nice. It reminded me of the motorcycle trips we used to take, stopping on the back road diners and enjoying the ride, the food and each other. When we were riding we sometimes wore headsets but other times we had a deeply intuitive way of communicating.
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We were having company on Saturday. The boys were coming over to do the yard, bringing the grandkids that I haven’t seen in a few weeks (and miss them madly) and my best friend and her husband and kids were coming over to visit. They also brought me a cake and balloons to celebrate my book being available on Amazon for pre-order.

The weather was gorgeous and my son Nick (25) and I went outside to work for a while. My daughter Gina (15) worked with Nick while I worked on the food.

Michael seemed angry and agitated. He was also forgetting what I would say about two minutes after I said it. I was trying to concentrate on the food preparation and going outside to help Nick every now and again.
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Today we were running so late. Michael just could not get his act in gear and I am not used to it. He’s someone who has always been 45 minutes to an hour early. He hates being late. So when he decided to take a shower when we had to be out of there in 15 minutes on my time (and I am either on time or 10-20 minutes late), it threw me. It’s so unlike him.

He zones out a lot and he zoned out in the middle of the shower, the middle of getting dressed and then as we were trying to leave he suddenly decided he needed to make the bed. He has not made a bed since we’ve been married. He also circled the living room about 5 times and I know this is all the brain tumor, but I had to get him out the door.
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I’ve written about anticipatory grief and have reread a lot of things I read years ago in my training as a grief counselor and a therapist. There is this unbalanced feeling as you work hard to care for and love a terminally ill person and yet come to terms with a letting go that could come sooner than you’d ever want.
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Today was a good day. Michael didn’t “go dead” when it was time to leave. He was a little confused, but he quickly figured it out.

We had some traffic on the way to the treatment, but it was a nice day and we chatted and talked. For the first time since his seizure, Michael is making me laugh again on a regular basis. Today he thanked me for everything I’ve done for him these past few weeks and how much I have loved him these past 12 years. He was downright cutesy with me today. And it was nice. Very nice. Being with him is bittersweet as I know I will never be satisfied…even when it’s a glorious day.
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Right before Michael got sick, we passed an older couple in the store who were holding hands. I said to him, “We never hold hands anymore.” I said it in a kidding way and he just smirked at me and said, “Yeah, it’s all downhill from here.”

I remembered one night when we were married a few years…I showed him a catalog that had those necklaces that have the heart and each person wears a half. I didn’t think that he, a tough little Harley dude, would even give them a second look. But not only did he, but asked where we could get them. I found them in Macys and he wanted to go there the next night.
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