5.29.2009

Wedding Day!

PJ and I are getting married this afternoon at 5:30 pm.

Bax is giving me away and is the ring bearer. He's so excited that mom and dad are getting married.

PJ's giant family, my family, and our friends are here in town. Lonia (Mike's mom) has been staying here at the house since Sunday and is a wonderful help as things have gotten nutty over the past few days! I feel so supported by Mike's family. His mom, sister, and brother in law are going to be in attendance today.

Here's to new beginnings, to the amazing partner and best friend I've found and to the exceptional dad that Baxter is so blessed to have in PJ.

5.11.2009

May 11.

At left: Picture from Mike's friend Michele Kellemen from Penn circa 1986 or so... She just came upon it and sent it my way. He looks so young without his beard!

This morning:

Out of nowhere. Driving down 295 on my way to UDel like every Mon, Wed, and Friday. And there it is. A big Pile of Terd. I'm crying. Images of Mike juxtaposed like a sloppy mess in my mind. Us in love in Hawaii on a hike in 2000. Him firmly and confidently critiquing comedysportz rehearsal. Us driving around Tahoe on the honeymoon on June 2003.

Then him in a hospital gown in a chair, eyes drooping, feigning a polite smile. Speaking only when spoken to.


I had a dream last night that echoes the dream I have various iterations of every few months. He's in the hospital. He's not quite right. But he's right "enough" for them to continue with therapy and to keep him in rehab. Sort of the way he was right before the July 7th "Hail Mary" surgery from which he temporarily returned and then quickly vanished in swelling, cardiac arrest, and organ failure.

In my dream he was loving and smiling... faintly. He was quiet and childlike. He would respond to things sarcastically when the context was appropriate. But I felt a sense of dread and sadness. Knowing this was not the life he deserved to live.

Knowing that if he could see his "new self" through the eyes of his "old self," he would wish for death above this.


After about 25 minutes of crying in the car this morning, I turn off the music, and decide to reorient myself to the present moment with a little NPR. I tune in to whyy at the beginning of a story from the health/science desk about the lack of palliative care options for people who are dying.

http://whyy.org/cms/news/health-science/2009/05/11/a-bereaved-moms-story/8327

The concern here (one that I think about and talk about often) is that the medical system is so "cure-oriented" that it tends to prioritize length of physical life over quality of life. I often reminded Dr. Andrews or our main goal: for Mike to have a life of dignity and autonomy. Or none at all. It was this set of goals that set the stage for the high-risk final surgery on July 7th. High risk with slim possibility of high reward. And even as late as July 13-14, I kept reminding Andrews that Mike "alive" was not the goal. He totally understood and explained to me that because Mike was so young and otherwise in wonderful health, if we could "weather" the storm caused by the swelling in the brain from the tumor and the final surgery, we might be able to have Mike back.

"It's not time to hang up the kleats, Danna. I promise you. I'll tell you when it's time. But it's not time yet."

And he did tell me when that day came... 3 days later when Mike's brain was in the constant state of seizure, inevitably rendering him brain dead.

I feel grateful that Mike's hell ended. I sometimes wish it had ended sooner. I often wonder if his reluctance to move forward with radiation therapy in the winter ... and his desperate need to go to Charleston, SC in March instead of rushing into radiation treatment then - was his attempt to reclaim control of his life. To knowingly reduce the likelihood of his living a longer - yet less dignified- life. I don't know if he made these choices deliberately and willingly, but I like to think so. I am grateful that I am not in the place where I have to visit my husband at an adult daycare facility. I am grateful that Baxter does not have to grow up in a world steeped in gravity and the profound pain that would accompany such a situation. I am grateful that Dr. Andrews did listen to me. I do wish that we would have gotten off of the fucking gerbil wheel earlier. I wish that we had taken him back home in May or June. I wish he had died in his own house. I wish he had seen baxter again.

But, I am grateful that his hell ended and yet his legacy continues.

Where we were three years ago. May 11, 2006.
Mike’s having a good day. Not a great day, but a good one. I was there from about 1 until 4 pm. I washed his hair and face and gave him a nice shave. He ate half of his lunch. His sodium is still too low: 130. They’re working on getting that closer to 140. The low sodium might be responsible for his extreme fatigue. In spite of it, he was sweet and smooshy and pretty content. Always knows who I am. We listened to Rufus Wainwright and he tapped his fingers to the music.

I told him it was Nurse Appreciation Week while nurse Nicole was there in the room. He looked up at her face and said with a nod, "Well Ok then. I appreciate you." We laughed.

I think today I figured out some of Mike’s vision issues. It seems that not only does he have no peripheral vision, but he also has no vision down low either. Anything below the plane of his nose disappears. Put it this way - I put my face right in front of his, just 2 feet away and told him to tell me when he could see my fingers wiggling. I then brought my hand (with fingers wiggling) up from my lap in front of my face. He couldn’t see them until they were in front of my own eyes – basically right in front of him.

I think this black hole that exists down in his lap contributes to his confusion with what’s going around him. He often tries to place things down around his knees when he’s sitting in a chair, as though he things there are compartments or drawers or something down there. He also refers to objects that he thinks are there that are not (books, cats, etc), often reaching down low for random things. I talked to him today about how it might be helpful to “look” with his head and neck instead of just his eyes. He started doing it and it seemed to help a bit.

I also told his nurse Nicole about my observation regarding Mike’s visual fields. It proved useful for her when giving him pills to take. Usually she’d go to put a pill in his hand (down in his lap) and say, “Here Mike. Here’s a pill for you to take.” And he would reach randomly out move his arm all over, unable to find her hand. Instead, today, she said, “Mike, put out your hand. Lift it up.” And she put the pill into his hand when it was right in front of his face. It was much better. No guessing, no reaching, no random movements like before. As much as Mike has to learn new ways to do things, we need to learn how to best help him accomplish these tasks.