Sunday, April 30, 2006

[Photo: Mike's favorite toy to pass the time today... koosh balls from Kirk and from Susan]

Mike was very sleepy today. Had a 102 fever last night - little appetite today. All of these things seem to go hand in hand lately: fatigue, loss of appetite and fever. He seemed content though. Not happy or sad (his words), but sort of indifferent.

Nice amount of visitors today - Kristen and Brian (thanks for the fantastic cookies), Kirk and Angie who brought a great kooshy toy for Mike to play with, Kevin (who brought nothing as usual... some friend), and Dee for the dinner-date.

For those who plan on visiting, there's convenient parking located in a garage attached to JHN. The garage entrance is on 9th street just north of locust (between locust and walnut) on the left just after the intersection). Sat and Sun are cheap in that garage ($6 all day).

Dr. Mandel (the older doc whom Mike jokingly referred to a few weeks ago as "a pain in my ass") came in today. He's a cardiologist who's seen Mike for months. Today I chatted with him briefly outside the hospital room before he had seen Mike. He asked how Mike was doing today and I said, "not great." He put his hand on my arm and said in his sweet unidentifiable accent, "You know that the prognosis is not good." It felt oddly satisfying to hear someone just f*cking say it, you know? He had tears in his eyes and told me he found our situation so sad. He asked how long we have been married (almost 3 years) how old Baxter was (16 months). His daughter is 37 and has a 10 week old baby, so he said he feels particularly saddened by situations like ours.

I know a lot of folks are a bit nervous about visiting Mike. Just for reassurance, physically he looks great. His scar is almost all healed, and he barely has any visible changes in his face as a result of the craniotomy 4 weeks ago (one eye opens a teeny bit less than the other... but that's it). His skin is quite pale and he does shake a bit (like an older person), but he's really not scary looking at all. He looks like himself, just sleepy.

Several people have indicated that the comment I posted in response to yesterday's message from Anne was helpful, so I've decided to repost it here on the mainpage.

It's very odd seeing Mike not in control of his own world, given the person he really is inside. That being said, I have found that Mike does not feel awkward at all - and that helps me to feel ok redirecting him, or helping feed him etc.

Also, he is very suggestible when it comes to cues of intonation - meaning, if you say in a happy tone, "Mike, how about we x?" he'll say yes. If you say, "You don't want to Y, do you?" He'll likely say no. This also means that if you are confident or use humor when making suggestions, it works quite well.

I tend to be really positive and honest with mike and say things like, "You know, I think sometimes your vision problem tricks you into seeing things that aren't there. Like now, it's making you believe that there's a drawer down there, but there's not. I'll take this food for now and you let me know when you want it again, ok?" Sometimes he'll say, "So... there's no drawer here?" And I'll say, "Nope." And he'll say in a joking way, "Huh. Alrighty then. Interesting."

When he's tired and starts hallucinating or saying things that clearly don't make sense, I'll simply smile and say, "Mike, I think you're getting really tired and you're already dreaming even though your eyes are open." He'll usually agree that I'm probably right.

It's all about being confident. Just like improv. Make a choice with confidence and you're fine. Don't pussyfoot around stuff with him. He reads tone really well, and if we treat him like he's not a crazy guy, he won't feel like a crazy guy. A couple of times he's mentioned something about him being crazy or in a mental institution and I always correct him. "No. You have a brain tumor that is pressing into certain parts of your brain. You're not crazy. You're a pain in my ass, but you're not crazy." He always smiles. (Insult is good. It makes him feel like we're treating him like we always have.)

PostScript: 9:15 pm. I just got off the phone with the lovely nurse Seta. She talked to me for 20 minutes and told me she was sad to have missed me again (this is her 2nd night with Mike). She had seen all the photos and the schedule and said Mike was so lucky to have all of us. Earlier tonight she had trouble waking Mike. He just wouldn't wake up. She got a tech to come in and shake him up a bit and finally he responded, but he was really out of it.

I'm sad right now. I miss Mike. I never let myself go down this path because it's crushing and unproductive. But, he is my best friend and the only boyfriend who I ever had who I actually wanted to be with all the time and never got sick of or annoyed with. I talk a good game about how far I am down this path and if he passed away it would be hard, but I'd be ok. That's crap. I'm not ready. I'm far from ready. And I know I wrote the other night about how we should not be super-bitter, but rather try to rise above it. But, I'm not Mike. I'm not Mr. Zen. I am angry. It's not fair. After 7 years of work towards the PhD, I graduate from Penn in 2 weeks. The person most responsible for the path of my life, my happiness and my success might not be able to be there. I hate it. Baxter goes to bed in his crib with a photo album with a picture of Mike in it. After I read him a story in the rocker, he slides off my lap, reaches up for the crib and says "Up. Da-da" because in his mind, Da-da is up in the crib in the photo album. He gets in the crib, picks up the picture of Mike, kisses it over and over and says "I luh you." How the f*ck can I not be angry. This situation is bullshit. I'll be more positive tomorrow. Right now I'm mad.


Anonymous said...

Being a tiny part of CSz and all the people in it has been one of the best things that ever happened to me. I forget sometimes how much older I am than pretty much all the rest. I'm definitely old enough to be your mother. Being a mom, whether to a baby or an adult can at times, among all the other emotions, produce this feeling of almost unbearable heaviness that comes from being unable to take away the pain your child is feeling. The maternal part of me aches for you.
I wish I could just wrap you up in a big soft cocoon that would cushion some of that pain.
I'm so glad your parents are with you right now.

Anne Ladenson said...

It's ok to be mad, Danna. Damn mad, fucking mad. Out of your mind mad. I think it may be productive to not only let yourself feel it, but to tell the world it too. You're human for god's sake.

I can't help it but I have to tell you that I am floored that you have a 16 month old child who can say I luh you. A three-word sentence with a subject, verb, and object. Unbelieveable. Only you and Mike could have produced such a precocious little guy. I know you treasure him. Give him a big hug and kiss from all of us.

Jenny S-G said...

Damn straight, Danna. Anger is appropriate. When I left you and Mike at the hospital yesterday afternoon I was overwhelmed by anger. It's not f*cking fair.

Mike, you, and Baxter are continually in my thoughts.


Anonymous said...

It struck me today, as Brian and I left the hospital from visiting Mike, that we get to go home to our "normal" lives. Sure, we read the blog every day, we worry about Mike every day, but we are not there with you, Danna, living this day in and day out. I can't imagine waking up with such uncertainty every day. Uncertain about how Mike will be that day, uncertain what his future will be. The long hours at the hospital trying to make him feel better, talking with doctors, making sure nurses know how to properly take care of him. Then going home to take care of Baxter, and going to bed without Mike there beside you. You have every right to be angry. It's like grieving. Grieving for the life you and Mike once had and for the future plans you were making. Anger is a part of that process. You have to let yourself feel all of those emotions. It's important for your own well-being and state of mind. All I know to say is that I hope tomorrow will be a better day. And the next day and the next...
PS - For those looking for a little humor in Mike's day today; when asking him what kind of foods they feed him for breakfast, he mentioned waffles, puffed wheat, other grains and science fiction. I'm not sure what science fiction tastes like, but I hope it's better than puffed wheat.
With much love and admiration for both Mike and Danna,

Beth said...

Danna, as always, thinking of you and hardly being able to imagine how difficult this is for you. You are one amazing lady. Thought I would pass along my Mike-ism from Friday. It's a good one!

On Friday afternoon my husband Kevin and I were visiting Mike. I had to run over to Pennsylvania Hosp. to get a shot (nothing wrong, for those who know me), and when I got back to the hospital I was telling Kevin that everything had gone fine with the shot when Mike interjected. He said "You have to get vaccinated against the Jews". I replied, "But Mike, I am a Jew", to which he replied "That's the irony." Whoo-hoo - he is still funny as shit! Only Mike.

Anonymous said...

I'm sorry Angela and I bored Mike so much today : )

It was really awesome to see him. He looked great. Just like you said...Mike, just sleepy. I also second what Anne and Kristen said. Get as mad as you want. It's natural and healthy.

That being said, I have to admit, Mike was damn funny today, even if he wasn't trying to be. When he was saying, "All hands on deck" I couldn't help but laugh and I know he would have laughed if the roles were reversed. And the Nectarine fascination. Funny stuff.

On a more serious note, Angela and I just wanted to say you are awesome the way you are with Mike and he appreciates it, you can tell. At one point he was sound asleep and you touched his face and he cleary smiled. Us we just bored him to sleep. ; P

Kirk and Angela

Anonymous said...

Dear Danna:

Yes. Yes yes yes yes yes yes yes.

You are an amazing lady and the bravery and love you are showing to your husband and your son are incredible. Be mad.

Scott and I have had the plague but will come visit as soon as we are out of quarantine.

My love and admiration,

Jen Childs said...

Dear Danna:

Yes. Yes yes yes yes yes yes yes.

You are an amazing lady and the bravery and love you are showing to your husband and your son are incredible. Be mad.

Scott and I have had the plague but will come visit as soon as we are out of quarantine.

My love and admiration,

mary said...

hi sweetie. i love you and can't wait to get home so i can come be with you and mike.


francine said...

Hey Danna:
I just thought i'd share some info and personal experiences that may or may not be helpful. I definitely want to preface it by saying I still hold out hope that Mike will improve.

First of all, I work at the national board of medical examiners, and we include some test questions in our pool about how physicians should address concerns of families and patients in very difficult circumstances. The answer always is to tell the truth (with sensitivity). I think that as awful as it is to hear sometimes, there is also a relief that comes with hearing the possible bad outcomes said out loud and frankly. I think sometimes we know deep down that things don't look good, and there's a hidden extra layer of stress in not acknowledging it or not having others acknowledge it. So, I can see how it was something of a relief to have Mike's cardiologist talk about the possibility of a bad prognosis.

The second thing is just some personal experience I've had with illness. You may already know that I have multiple sclerosis (MS). Luckily, so far in the 15 years since I was diagnosed, it's been mostly just an inconvenience and occasional embarrassment. But a few years ago, I had a really bad summer. I had trouble walking even 1 block and, at that time, I felt bone-chilling terror at the idea that this was it and I was going to be in a wheel chair for the rest of my life. I eventually got better (it was a temporary flare up of symptoms), but back then I didn't know that I would. I had the support of friends and family, but I also sought help for the overhwelming terror I was feeling. Something that ended up being very helpful for me was to talk with someone and spell out my specific worries (how would I work, get around the city, accomplish daily tasks) and make at least rudimentary plans for how I'd live in that possible reality. At least my amorphous, nonspecific cloud of worry became smaller, specific areas of worry that I could address. I know there are many things you can't control, but it may help, if you haven't already, to try to at least begin to name the more mundane, logistical worries (finances, home health care, child care) to get some sense of control of an unknown future. again, just some thoughts.

Deke Young said...

The Webcam that Diana and I are using:


I bought mine at Microcenter for $49.99


This is $53.99 at Best Buy Online.

Di and I are using the WebCam in conjuction with MSN Messenger to set up point to point Videoconferencing with voice.

Our WebCam is connected to VADufresne@Comcast.NET

Di is PaintersHelper@Comcast.net

Arizona Kate said...

Unfair is the understatement of the year.

Mike was right when he said that it was just dumb luck (from your posting on April 19). But it does seem to me that there should be a cosmic rule that says "People who make the world a better place shouldn't get brain tumors." And Mike certainly makes this world a better place!

I love your posting the Mike-isms of the day. Just shows that Mike is hardwired funny!

You, Baxter, and Mike are in Jeff's and my thoughts!

== Kate