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True to form Michael rebounded again. I wonder, sometimes, if he doesn’t get exhausted and then goes down for a few days. One of the hospice nurses also thinks he’s more relaxed on the weekend because I’m right by him. He also reported some pain to me and Gina last night whereas he did not report pain all week. I wonder what the weekend downtime really means. I wish he was more alert when I was here. This morning he’s doing okay and we have an MRI on Monday to try to figure out where he is.

In other news: those of you who read here know that I’ve had issues with my caregiver. I hired someone new to start this weekend and had planned to dismiss her last night. But, of course, we had another twist.

On Thursday I had a new housekeeper start. My last one, believe it or not, had to quit because she was diagnosed with a brain tumor. She had it operated on and they removed 70 percent of it but could not remove it all. She is starting radiation and chemotherapy. So I’ve been without a housekeeper for about a month. Gina and I have been cleaning on Saturday mornings but I’m exhausted from 12 hour days and then a few hours at night with Michael. My schedule has been get up at 6, get Michael breakfast and get ready for work, leave the house at 7 am. Return at 8 pm. Spend 2-3 hours with Michael. give him his night meds and sit with him until he goes to sleep.
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For the first time Michael is complaining about pain. It was so weird, what he was describing, that I called hospice on Sunday night. He was reporting weird, traveling pain…his back, his neck, his teeth, his fingertips. He never complains about pain, even when he has some (you have to ask) so it was odd and alarming to me. So I called hospice and they called his doctor.

The oncologist thinks it’s nerve ending pain and they prescribed Neurontin for that.

I felt dejected after he had been doing so well. He’s not as alert as he was and his voice is soft again. I can’t bring myself to try to wake him if he’s in pain.

Today I opened the cell phone bill. I’m still carrying his cell phone on the plan and I can’t bring myself to shut it off. I called his voice mail to see if there were any messages and his message, “This is Mike” in his sweet voice (you could tell that he wasn’t all that into making the recording) hit me like a ton of bricks. It sounds like he was out on the water when he made it. It’s kind of windy in the background. I haven’t heard the message in a long time. It upended me.

I looked back through the last year’s statements and I could track all the times he called me and Gina. And then they just stop. They just stop.

I didn’t expect a cell phone bill to unravel me but it did. I spent the entire day on the verge of tears and then just sobbed in the car on the way home.

I miss him so much.

My soul is howling.

Michael took a bit of a dive when I went to Chicago. He had a really hard time with me leaving for so long (5 days). I was scheduled to go to Dallas for a friend’s wedding this weekend but I’m not comfortable leaving him again so soon so I didn’t go. He has been on a steady uphill climb since I’ve been back and I don’t want to interrupt it.
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I remember the exact moment I fell in love with Michael.

It was our second date. We had burned up the phone lines before our first date and between that and our second date. I knew a lot about him. I thought he was sweet, funny, thoughtful. I didn’t know, yet, if he was a keeper because I wasn’t looking for a keeper and I knew he wasn’t looking for one either.

We drove around in the rural parts of central Massachusetts where I lived. He lived close to Boston and wasn’t used to the winding, dark roads.

We had gone to dinner (I think) and were driving around talking. We were in his big Chevy pickup (he towed a big bass boat on the weekends so he always had a big truck). We were driving around through the forests and everything was very dark out.

Suddenly this raccoon darted in front of the truck. Michael swerved slightly and then looked in his rear view mirror. He said “I’m pretty sure I missed him. I probably grazed the top of his head.”

I knew that there was no way, looking in that rear view mirror, that he could see anything but pitch black. The whole “I probably grazed the top of his head” made me laugh out loud. The concern for the raccoon, and his concern for me thinking he didn’t just kill it, made my heart swoon. I never fell so hard and so fast. And part of me knew it was all okay. It was fine to fall like this for someone so wonderful.

About a year later we were already married 7 months and I marked the occasion of our second date with a small ceramic raccoon and shared with him that the whole raccoon thing was when I fell in love with him. He smiled.

Michael’s always kept the little raccoon on his dresser even when a cleaning lady busted off half the raccoon’s paws.

What’s more is that Michael has never changed from the sweet, sweet man who was so concerned about the raccoon and trying to impress upon his date that he did not just murder a woodland creature. He never stopped being the person he was on our second date and every time I saw a raccoon, it reminded me of that. Of Michael’s innate, never-changing sweetness.
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This past week was the longest I’ve been gone from Michael since his seizure on September 16th. By the end of the week I was really miserable and crying at the drop of a hat. I felt an existential loneliness that I have not felt the entire time I’ve known him. Coming through the door, I saw the relief on his face that I was there and I felt the same. As I sit here on the couch next to his bed, I just feel at home in a way that’s bigger than just being where you live. It’s home.

I went to see Keira Grace today.

It’s a 3 hour drive from Chicago to Indianapolis and driving down I heard a lot of songs on the radio that made me cry. Yesterday I cried in the supermarket. I just have moments where the tears spring to my eyes and there is nothing I can do about it. I’ve always been such a non-crier but when my grief comes these days, I have zero chance of stopping it. It just overflows. Read the rest of this entry »

I am at laguardia and my flight has been delayed two hours. I worked for a while then went to get something to eat. On the way back to my seat I realized no one knows I am delayed. It has been almost six months since I have been able to call Michael and I still miss him so much. I am in a crowded airport terminal and cannot stop the tears from running down my face. I am a mess.

Michael is holding his own. Doing fairly well. I’m irritated at the world. I still hate all these people in my house and I am sick of them all talking to me like I’m a child. I am the type of person who doesn’t take that and my son Michael said to me, “Gulp hard mom, gulp hard.” in an effort to get me to hold my tongue. Tongue holding is not something I do. In fact, it’s completely what I DON’T do.

I tell hospice he needs something and they don’t respond. Two weeks later they will leave a note for me that he needs what I said he needed two weeks before.

Yesterday my caregiver yelled that the kids made noise in the morning. Then she yelled when I came home late because I didn’t call. I had been out of the house 16 hours, I am sick and traffic and rail service was horrible. The day before I had been home to work but did everything for Michael while she sat there. Then she yelled at ME the next day? WHAT? It took everything I had not to scream at her. I don’t want any of these people in my house. I want my life back. I want to stop swallowing all the feelings I have about all of this.

I want my life back. The one where my husband is not dying. The one where these people are not in my house. My life. The one where I can tell people to jump off the roof when they say something I don’t like. That life. I want it back.

When we lived in California, I would – very often – say to Michael on a Sunday afternoon, “Let’s go to Dairy Queen and get an ice cream…” It was across town.

Most Sunday afternoons in California are very pleasant in the spring, summer and fall and even a large part of the winter. But we would always set out in the middle of the afternoon…a very pleasant time…lazy, hazy, perfect weather Sunday afternoon in Northern California. We would sometimes take our motorcycles but most often we would just jump in the car and ride through the couple of neighborhoods between our house and the Dairy Queen. We lived in a typical California suburban neighborhood…sloping streets, palm trees, clean and pleasant.

One Sunday we jumped in the car and rode through the neighborhoods as we always did. Families were out, kids were playing in the street and in the parks. We passed one house where they were setting up a bar-be-que in the backyard. It was a corner house so you could see it from the street. The kids were in the yard playing ball and the young dad and a friend were setting up the tables and chairs and starting the grill.

We moseyed through the streets and over to the Dairy Queen. We ate our ice creams in the car while commenting on everyone else. It was a typical, pleasant DQ California day.

We slowly made our way home and as we came upon the house where they were having a barbeque, the house was now engulfed in flames. The entire back of the house was on fire and the flames were shooting up past the second story of the house. The dad and his friend who had been happily starting the grill not a half hour before were now shirtless and frantically slapping at the flames with their shirts while the children ran wildly into the street.

Traffic stopped in both directions and people (including us) were getting out to see if we could help. When we heard the fire trucks we all scrambled to move our cars. As the fire trucks came down the street the fire just rushed across the roof and down to the front of the house. It was a fast moving, raging fire that had grown, quickly, to unbelievable proportions.

What had been a placid and happy picture a short time before had now turned into a horror show.

Rather than rubberneck and be in the way, we made our way home silently. As we pulled into the garage Michael looked at me and said, “One minute you’re cooking some burgers and the next minute you’re watching everything you own go up in flames. How does that happen?”

This journey with cancer reminds me so much of that day sometimes. We were just going to put some burgers on. Then the house was burning down.

You just never know.

You never ever know.