5.02.2006

Tuesday, May 2, 2006


[Photo now hanging in Mike's room as an 8X10. I asked if he could see it and he said yes. He even knew it was taken at Christmas.]

Still looking ahead to scheduling dinner dates for next week (May 8-12 - also nurse appreciation week)
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Got a call this morning from Dr. Andrews. Mike's preliminary blood cultures from 2 days ago came back this morning and indicate he has an infection. So, they are postponing surgery. He told me that he could frame it in a positive way and focus on the fact that they're going to go ahead with radiation each day, figure out what the exact bacteria is, give Mike targeted antibiotics and then (in a week or so) do the procedure. Since cysts are less likely to grow back if drained during a course of radiation therapy, he thinks this should still work well for Mike. But once again, there is too much going on for us to be able to talk about anything long-term.

I told Andrews once again that I simply can't imagine Mike in his current state forever. On his good days (like today… thus far), Mike is alert, but tired, knows where he is, and can have a conversation fairly appropriately. But even on those days, his vision is severely impaired, he has trouble feeding himself, his short term memory doesn't exist, he hallucinates, and is incontinent. On his bad days, he's got all of that going on, plus is hard to rouse, has a fever, doesn't eat, and is unaware of practically everything happening around him. What I keep trying to get at with the doctors is what level of quality of life it is that they are hoping to maintain for Mike. Basically, is their priority just keeping him alive, or is it getting him better? Dr. Andrews told me that they are still attacking this as though Mike's condition may improve. With the radiation and draining of the cyst, he imagines it's quite possible that not-too-far down the road, Mike's short term memory may come back, he'll be more awake, the hallucinations may subside, and he may regain control of his bodily functions.

Dr. Andrews is always extremely sympathetic and he's says he is certain that he and I are on the same page. He said what he's said before, that is, he knows that all I want to know is if I am going to get Mike back - and that's something he just can't tell me for sure. I told him I will probably go over the same huge questions with him every day and he might have to reiterate the same thing everyday, “We don't have enough information to know what the future holds.” I'm ok with that answer - I have to be. I just appreciate being able to ask him over and over without him tiring of my inquiries. Today he was very sweet, acknowledged how brutal this journey has been for us, and said my questions were never a bother.

I also emphasized to Dr. Andrews that I am not at all ready for Mike to die. I'm just not. He might be only 10-30% Mike on any given day, but at least it's better than 0% Mike. Today, for example, the physical therapist got Mike up and walking a tiny bit and sat him in a chair. He looked great. It was about 10:45 am and the sun was streaming in his window. I told him I thought he had the best room in the hospital. He said, “That's because my beautiful wife is in it.” I also told Mike and nurse practitioner, Jamie, that he's got short-term memory loss but the long-term memory is pretty great. She said it was remarkable how great he was with old information already stored in memory. “Like me, for example,” I said to Mike, “I'm in there. In your long-term memory box. Can't get rid of me.”

“No matter how hard I try,” he said with a smile.

That's why I'm here at the hospital every day. Not just to be his advocate and make sure he gets fed/turned/ up in a chair - but to be with him. Cause every once in a while, real Mike rises to the surface and I get a moment with him. A kiss, a smile, a moment to hold his hand, or even a little insult. What more can a girl ask for?

*************

Mike went for radiation therapy from 11:20 am until 12:30 pm. Slept from 12:45 until 1:45, Got him up in a chair from 1:45 until 2:30 for lunch listening to some music (thanks for the Van Morrison CD, Kathy! He loved it.). He ate a wawa salad with feta, cherries, walnuts and chicken - and seemed to love it even though his terrible wife forgot the dressing! At 2:30 pm he got back in bed to dose for the afternoon (likely until dinner).

*************

I took the advice of my cousin's wife, Mary out in Wisconsin, and from my sister, Jae, and put a recent picture of Mike, Bax and me up in his room (the one included in this post above). I enlarged it to an 8X10 and I put the date on it: Christmas 2005. Mike is so happy in this photo and his eyes are full of life. He's got all his Mike-hair and we're holding Baxter, dressed in cute holiday garb. My sister suggested that hanging this photo and indicating the date on it would help the hospital staff understand just how recently Mike was Mike and that this guy lying in this bed, asleep 22 hours/day is a dynamic person who is filled with life. I hung it up this morning around 11, and when a nurse came in to help me get Mike back into bed at 2:30 pm, she looked up at the photo on the wall.

“That was Christmas 2005? Like just 4 months ago?” She asked.

“Yup,” I replied.

She looked back at Mike already asleep in bed, “Wow,” is all she said.

14 comments:

Beth said...

Hi - Blog wasn't posted when I left the cell phone message. Marci and I will be there around 5:30. Awesome picture.

Love,

Beth

Anonymous said...

Hi Danna,
I have been reading your blog for a week to keep updated on Mike's condition. I haven't written anything because, well, it is not usually my style to go public with my thoughts for someone. However, I see how much strength you draw from knowing how many of us are out there thinking of your family, so I decided to send something your way... In my own work, I study bits and pieces of philosophy concerning sense perception and memory. I have some readings I have been setting aside to send you, but I thought I would post this one for you to read. It is the preface to a book called "The Time of Memory" by Charles Scott (a philosopher at Vanderbilt-- I assume blogs are somewhat protected from copyright law!) Anyway, that is the book and here is the preface:

Three years ago when I was working on the third chapter of this book, I read its first section, ''First Fragmentary Image," to Wilko Schoenbohm. It was twilight in a summer's evening, and we sat on his deck which overlooked a small meadow that fell through a grove of cottonwood trees, down to a stream. Memory and concentration defined serious problems for him as he struggled to remain in touch with the world around him, but his sweetness of spirit came out clearly when he regained from time to time his perceptiveness. When I finished reading he looked out to the tall trees and to a bridge that crossed the stream and, I thought, remembered something that I could not know. The brevity of his memory and the brevity of the moment of which I spoke in the few paragraphs seemed to rise together in a moment of quiet insight. He said, "That is beautiful." I remember that I took his words to refer not so much to what I had read as to the moment in which his memories gave a living intensity to what I read and turned my words into his experience, a brief experience in which I was a participant, but one that his memories and generosity transformed and carried beyond my grasp. And I now remember that bygone event, which is quite beyond my reach, as I commerate him.
Many years earlier, shortly before her death and long after she had lost most of her awareness, my mother's eyes flashed with recognition as her grandchildren walked into her hospital room. Although no longer capable of forming words or syntax, she laughed, reached out to them, and made the same sounds with the same rhythms that had accompanied her words and were tailored to each grandchild when they came to visit her, sounds and rhythms that had welcomed them for many years when she was "herself." She again gave each of them their place of greeting and affir-mation in her singular connections with them. Later she hummed along as best she could as we sang familiar songs before she sank back into an oblivion into which none of us could accompany her—only to come back again, now and then, into the light of activated recognition which restored us to her world and which brought with it new greetings and grandmotherly pleasure.
Although this book is about remembering and memory's loss that often happen beyond people's grasp and that are quite nonpersonal, I wish to begin with this dedication to two people who, like so many others, have enjoyed and suffered the time of memory with a stark pronunciation that makes unmistakable its force in our lives. I also wish to remember their undiminished gentleness and kindness in the midst of this force that gives us incomparably rich moments in accompaniment with unspeakable devastation.

Sorry this is so long. My love to you all,
Steiner

Jenny S-G said...

Danna,

I so understand where you are right now. As I told you when I saw you last Saturday, I spent 6 uninterrupted weeks with mom after she went into the hospital. During that period she went from terrible to okay to bad to worse to terrible to bad to okay to bad to worse.

Every day was a new adventure - would she be lucid, would she be nearly unwakeable? The "worse" days were so frightening, and yet I felt resigned to our collective fate and certain I didn't want months of those.

On the good days there were such sweet moments. I felt so thankful that she was still with me that I would have taken dozens of days of "not-mom" to have a few moments of "mom."

Those little moments with Mike are beautiful, and it makes my heart glad that you are having them. Through those you will find new strength to keep fighting.

Love,
~Jenny

Anonymous said...

Danna,

Just happy to see how much you appreciate every day and moment with Baxter and Mike. I read every day and want to cry when I see what you are going through and I'm so far away. I think of my sister and how Jeff was ripped from her so quickly and suddenly. I can only imagine your pain. Everyday is precious enjoy every moment. I must also say that I was also amazed at the "I luh you" from Baxter! I practically stand on my head every day to get some of my 3 and 4 year olds at school to say that! Mom, dad, and Matt have you bookmarked and I know they think about you constantly. We're having Mason's 1st birthday party this weekend. I'm expecting the "fam" so please know that you will be in our thoughts and prayers. I'll ask Mason to make a little birthday wish for Mike when he blows out his first candle.

Love,

Jenna

The Brain said...

Thank you for the beautiful passage, Steiner. It's funny watching Michael, I can see flashes of perceptiveness, like he's not just here, but actually reflecting on something. Ususally I ask what he's thinking about and he says something mundane about whatever he's doing (sleeping, eating, drinking). Today I asked him to take the advice of the PT who was in in the morning. She advised him to look all around him, moving his entire head. Because of his blindness, he lives in a sort of tunnel all day, and getting him to turn his head all around to take in the room around him seemed to help. It seemed to open up his mind a bit more, beyond just what is before him. He recognized the laptop, the stuffed lion, the television, a chair, a stuffed rabit, and some colorful pictures on the wall (though the subjects of the pictures were a mystery to him). I think by recognizing these items and taking them in, he seemed opened up for a moment. Hugs to your lil' boy. I can't wait to meet him.
love, d

The Brain said...

To Jenny SG and Jenna B:

It's funny, when my dad met Jenny sG in Philly (at a bar that I "dragged" my folks to 6 years ago), dad said that Jenny reminded him so much of Jenna. It's funny that two people who I never thought would have a reason to meet are in the same metaphorical space right now.

Jenny - all I can say is that reading your note, I felt warmed in my heart knowing that I am going to know you forever. That's the great part of being an academic in a tiny field like ours. We can't get rid of each other no matter how hard we try.

And Jenna - I have thought of kelly and Jeff so often. I couldn't recall how long they had been married, but I remember your phone call to me so vividly that winter day and how unthinkable the situation seemed. Now, looking at kelly and her lovely family, I draw strength from knowing that I, too, can have a wonderful life full of love and laughter - no matter what happens. It's been inspiring to think about.

love to you both,
danna

Anonymous said...

Danna,
Haven't commented yet but I am reading the blog every day and thinking about you guys all the time. Just wanted to let you know.

I'll be back -- I was going to say with more burritos, but I will call first and give you guys some options.
Love,
Bets

Anonymous said...

Danna -
With everything you, Mike, and Baxter are going through, please know that you are all in my thoughts and prayers.

Jess

Lisa said...

Danna,
I got your link from HLC, our sons both go there. I've seen Mike a few times dropping off your son. He always had a smile on his face. I'm amazed at the strength that you have while going through all of this. I will keep you and Mike and little Baxter in my prayers. If there is anything I can do, please feel free to ask. You can ask the day care for my information. My name is Lisa Staffieri. I will read and pray everyday!!

Michelle-craniomom said...

Danna,
I got the link for your site via the cranio support group website. I have been reading it through for the last few days. My son Eric, 9 years old, has a second craniopharyngioma. My heart goes out to you both. He had a craniotomy for the first one and had radiation at St. Jude's research hospital in Memphis last year for the new tumor. I have been brought to tears reading your posts. I know it is extremely hard to see Mike this way. I remember the times Eric was not himself and the fear I felt. I will be praying for Mike's healing and for you for strength. I don't know you all, but I can see the great love you have for one another.
Praying for your family...

Beth said...

Hi - Just a little update on our dinner date with Mike last night. He was sitting up in bed, and didn't seem to want to get in the chair. I knew that he had been up a lot during the day, so thought that would be ok and didn't push it. It was awesome to have Kathleen there - I have never helped Mike with a meal before, and have to admit I was a little nervous about doing that - but she took care of everything and was wonderful, and also reattached Mike's pulse-ox monitor when he took it off later in the visit.

Susan Murphy also came by, so with Marci there as well it was a real room full of people, all chatting and laughing and enjoying each other's company. Mike was awake and alert and interacting with us during dinner and then for a little while afterwards, but then closed his eyes and rested. What I thought was great was that instead of falling asleep right away, like he does sometimes at that time of day, he was clearly listening to our conversation and enjoying it, and at times made comments and/or responded to what was being said. He stayed like that for a long time, and only as we were all leaving at 7:00 or so did he finally drift off into real sleep.

Maybe this is a strange thing to say, but there is a very sick man in the room with Mike, and he was completely unconscious while we were there, but I kept thinking that maybe at some level he could hear all of us chatting and laughing together and maybe that gave him some comfort. There is such an amazing vibe during these visits with Mike - people coming together who know and love you and Mike and Baxter who might not know each other - but there is such an immediate sense of community among whoever is in that room that I can't help but feel that it takes over the whole space and adds good to the air.

Anonymous said...

Danna,

I just wanted to add my love again for you and Baxter and Mike. You are all constantly on my mind and I am awed by your humanity and by the connectin you and Mike share. It is rare and beautiful and I'm so glad that you treasure it each moment.

love,
mary

Anonymous said...

Here's my update:

My wife Kathleen and I arrived at 4:45 to hang with Mike and help with dinner. I was taken aback at first, having not seen him recently. He was responsive but looked tired. I had a bit of the "I don't know what to says," luckily Kathleen, being the semi-experienced nurse, kept the situation normal. For me it was a weird mix of not wanting to talk down to him, and not knowing how to relate to him. "What's new?" ain't gonna cut it. Eventually we just started telling him about our life, Kathleen's preganancy, etc. He chimed in and answered questions as well as could be expected.

His nurse came in to give him meds and her approach was wholely different. She spoke to him like a coach. She wasn't rude or abusive - she was commanding. "Open your eyes, Mike, you have visitors." "Time to sit up Mike." "You have to take this medicine now, Mike." "Can you do it yourself?" This was the most responsive I saw him the entire night. Eyes open, charming, funny - Mike.

After everyone left, I stayed with him until Kevin arrived. I sat there not knowing if he was awake or asleep. I suddenly felt intimidated by him. I wanted to connect but I didn't want to piss him off by asking inane questions. I tried speaking to him, asking if he remembered who had left the room. He said "yes." When I asked him who had been there, he wouldn't answer me. I asked "Am I boring you?" "Yes." he answered.

Kevin arrived and we spoke for a bit. Then I left them alone. My time was up. It was Kebbeh's time.

I called Danna and had a nice long talk with her about the day. She told me that her interaction with Mike is very similar to the nurse's. She gets right next to him and says "Wake up! You have people here." See, Mike sleeps about 22 hours a day now. He needs to get wake up once in a while. And he responds to this. I think he needs someone to help him focus his attention, to say "Look over here." or "Time to do this." It's hard for someone like me to do that with someone like Mike. Drits suggested that if you want to know how to deal with Mike right now, visit him when Danna is there. It helps a lot.

All told, it was nice to be there, as awkward as I may have felt. I'll be back.

-Don

Michaela said...

Danna, my son is slightly ill--this time with hand foot and mouth disease--and I don't want to be an unwitting vector, so I will postpone my visit til next week. Know that I love all of you and you are always, always on my mind.
Give Mr. Young some hugs from me.
--Michaela