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Michael has taken a dip that is different than previous ones. The indentation where he had his craniotomy is getting bigger. I have no idea what that means. He doesn’t seem to be able to respond though he wants to and he’s having trouble swallowing. The brain controls everything and as I look at him, it’s almost as if I can see the brain losing the battle against the tumor. It’s the first time I’ve seen this. Even when he’s been very symptomatic and even when his fever went to 104 that one week, I couldn’t SEE it. I was all happening internally. All I saw was the symptoms.
This time I feel like I can see the disease taking over. I hate it so very much. I just hate it.
This seems to be quite visible. It could be another slight dip but it seems very different. Right now I’m just doing what I do and hoping for the best.
Is that you never have any idea what anything means. You tend to stare at the person with cancer, sometimes, as if they are a science experiment. Like what the hell is happening now?
Michael had a craniotomy in September for his brain biopsy. And the scar remained but his hair started to grow over it. And then I noticed, this week, that the area where he had that is collapsing inward. I thought I was crazy. It couldn’t possibly be that. And then the hospice nurse mentioned it to me. So yes it was.
And what does that mean?
And he started to rebound from his really rough week and then he had a headache.
And what does that mean?
And he wasn’t talking much and when he started to talk it was in a whisper. Then all of a sudden it seemed as if he was shouting.
And what does that mean?
And he would pause before he’d say anything.
And what does that mean?
And then he would just intermittently start shaking.
And what does that mean?
I flutter about and stare at a group of symptoms and signs and try to figure out what it all means.
When Michael was well he used to roll his eyes when I talked to animals or kids in a baby voice. Like he was annoyed but he always had a smile on his face. His tough Harley persona had to roll his eyes but his squoofie persona that I loved thought it was funny.
Tonight I said to him, in that voice, “Are you cold hunny bunny? We’ll make you comfy cozy hunny bunny….here I come with the binket.”
And he rolled his eyes and smiled at the same time. Even gave a small laugh.
All of a sudden he wasn’t a bunch of signs and symptoms. He was my hunny again.
And I knew what that meant.
I had a feeling Michael was fading. He started to look through me instead of at me. He starts to lose his voice and then he drifts away.
Even though I’ve been here dozens of time, the grief feels new and raw each time. I want to scream, “Don’t go!” every single time.
He started with the hiccups. It’s a side effect of the Decadron. And his stomach was upset. Then his voice got weak. Then he started to fade. Fast.
Michael’s birthday celebration was somewhat bittersweet. He was up all day for it and he had a great time. He really loved his dinner (Red Lobster Ultimate Feast) and his presents and cake and cards. Derek (youngest grandson) has learned to blow kisses and he kept blowing them at Michael and Michael laughed every time. Mattingly, the pup, was licking his hands and he loved it. All the kids were here all day and it was nice.
Michael sat at the table twice. First for his dinner and later for cake. After his dinner I thought he was going to go down for the count but he didn't. He has trouble, because of the tumors, holding his head upright or sitting up for any length of time and yesterday he sat up for over an hour to eat dinner and later for almost an hour for cake and presents.
During the opening of the cards, I read all the cards out loud and each of the kids had written very heartfelt notes inside each one. As I read them aloud all of our hearts were breaking. Michael was smiling as I read them but I was hanging back and pushing back tears. Each of the kids took turns turning away and Gina ran from the room at one point, just completely overcome by it all.
Gina wrote about how he has taught her everything and been there for her every single step of the way. Nick wrote that Michael was the best father in the whole world and that he will consider himself a success if he’s even half the father that Michael has been. Michael wrote that he could never express how much he has meant to him.
Everyone bought him the most incredible cards and each put a personal note in it. We all struggled through it but he really enjoyed it. And he had such a good day.
I’m watching the baseball game and glad to see the Yankees doing their Breast Cancer Awareness campaign (my adoptive mother died from breast cancer after going through a mastectomy and chemotherapy and being in remission for a while and it’s a horrible disease) but I’d love to see a more brain cancer awareness. Esp since Yankee great Bobby Murcer died from the disease. In time. I hope that I am able to work on this as time goes on…
Michael had an up and animated Saturday. He ate a lot, watched movies with me and Gina and except for the fact that he was in a hospital bed, it was almost like movie nights of days gone by. Like so many the three of us have had over the years.
On Sunday he grew hoarse and low energy and today he’s not responding to me at all. It’s a cycle. It’s the tumors moving around in his head.
We’re planning a birthday celebration for him on Sunday. We hope that the animated person will be here. We want to give him seafood and cake and presents.
I remember seeing an Outer Limits episode when I was a kid where everything was frozen in time and you could see what was about to happen in just a few minutes. A little girl was going to get hit by a truck and it was the challenge of the people who were not frozen to figure out how to save her when time “unfroze.”
Over the past 8 months I haven’t really moved anything of Michael’s. It’s all as it was before his seizure. His phone is still activated, his computer is still plugged in. The pants he bought days before his seizure still sit in his closet in the bag they came in. All his clothes are hanging in his closet and even the battery pack that he bought the weekend before his seizure is sitting on his tall Craftsman toolbox. His fishing poles remain in the back of the van. The tackle box sits right by the door on his side of the garage. Everything in the garage and the basement (his realms) is as it was.
I have read the stories and listened to the talk shows about Farrah Fawcett and her battle with cancer. I’ve read about Patrick Swayze. And as these stories trickle out and people speculate about famous cancer patients, I live with the battle privately every single day. And I thank goodness for it being private.
When Michael was diagnosed in September they gave him 3-6 months to live. Six months being the very outer range of the time frame. It’s been 8 months and he’s still here.
We were watching Hell’s Kitchen and Michael seemed restless. I went over and said “are you okay?” and he said, “Why don’t you become a chef?” (with the tumor he says sorta strange things sometimes). I said “I’m a lawyer, I’m an author…” and he said, “The book’s not out yet.”
I remembered that he was on his down week when the book came out. He hasn’t even seen it. Since he was having an “up” day I ran and got a copy and held it up for him to see.
He got the biggest smile on his face and just lingered there a while staring at the cover.
Then slowly he lifted his hand to give me a thumbs up and in a hoarse voice said, “Way to go dear-o.”
It’s been so long since he’s called me dear-o and I had to step behind him because the tears were forming.
I opened the book and read him the acknowledgment about him and I leaned in close to him and whispered, “I couldn’t have done this without you.” He shook it off and said, “Yes you could.” I again stepped back behind him so he wouldn’t see the tears fall.
As the days run together there are certain moments I live for; certain things I hope I’ll hear one more time. Dear-o has been one of them.
It’s been weeks since he addressed me or really talked. I almost forget what that sounds like.
Tonight I was thinking that I don’t want to forget what he sounds like…what the words are that he uses and what he says. I’m so afraid I’ll forget.
But for tonight I had it. I had him. He was there. And it was good.
Today hospice decided to give Michael a bit of a walk. He hasn’t been out of bed in about a month because of his weakness and he seemed a little more alert today so they took him from the bed to the wheelchair and had him walking while holding onto them.
He was trying to do it and shaking the whole time. He’s so thin and so gaunt and fighting fiercely to stay upright. Walking scares him and he gets nervous very fast but he wants to move around.
As he walked, or shuffled, slowly and I watched him holding tightly to the hospice worker I had a flash of him bouncing through the room when he was well. He always came in full of energy and yelling “Hello?” to me and Gina. So many days we’d be on the couch and laugh because we would hear the garage door open and we would go “3, 2, 1…hello???” as he would call it up the stairs. It was SO predictable. The exact same greeting every single day.
Rope Burns ~ A Journey 