Monday, April 24, 2006

[Photo: Taken on boardwalk down in Ocean City, MD in September 2005]

Today Mike had a really good day. He was alert, happy, funny and quite charming. He was confused from time to time, though. And short term memory is a major problem. But he also showed a couple of instances that made me hopeful for the future.

The word on the street is that Mike will officially start radiation therapy tomorrow (transported by ambulance to the building 1 block away for a 30 min treatment each day). They are working on transferring him either to the actual building where radiation therapy occurs, or to another unit in Gibbon – a stepped down unit. They are also working to get us prepared for Mike to enter a brain rehabilitation program at Magee. Whether its feasible and when depends on what transportation they are willing to arrange from Magee to get Mike to and from radiation each day (for 6 weeks of treatments).

Interesting tidbits:

I brought Mike some Sports magazines to leaf through and he really enjoyed it. He couldn’t read a lot of the type, but could read the big headings and see the photos. It occupied his time and his mind. He also LOVED the linking rings Susan brought. Great idea.

About 10 minutes after Cheryl left from a brief visit, I asked Mike what female had just been visiting, sitting in the chair by the window. He looked over at the chair and said confidently, “Cheryl.” I asked how he knew that and he told me that he could picture her sitting in the chair – particularly her curly hair. Cool. Maybe he really is a visual learner and the Polaroid camera could help – see previous post. (Does anyone own a Polaroid that we can borrow?)

My sister, Jae, arrived today. Thanks so much to Anne for picking her up at the airport and getting her safely to the hospital. Jae and I had a really interesting talk with Mike this afternoon. The resident had come in to discuss the radiation and rehab plan with us and after he left I asked Mike some questions. When I asked what the treatment was he would be receiving starting tomorrow, he said, “tissue maintenance” to maintain the size of the tissue. Sort of, yes. Radiation therapy to maintain the size of the tumor.

I asked him if he knew what part of his cognition he was having trouble with and he told me clearly, “short term memory.” I have been telling him this every single day several times a day. The fact that he knew this detail tells me that he is able to retain certain important information. It’s not a done deal.

Then I asked him some general questions about his condition and he told us,

“I feel like I have this sea of information floating around and I don’t know where to put it.”

Now, Dr. Rubenstein can explain this better than I, but what Mike said is exactly true. As I replied to Mike, “You have this huge store of information in long-term memory, in this big lockbox that’s safe and sound” (at which point he did an Al Gore impersonation and said “Lockbox.” When I asked who he was mocking he said, “Al Gore” – Ta-Da. Long-term information is in a lockbox). I told him it seemed like his brain was not able to make successful use of his long-term memory to integrate newly acquired information. Jae explained that at Magee, they were going to help him retrain his brain to connect new information to old constructs in long-term memory so that they would have some place to go and wouldn’t be floating around so much. He was really into this and enthusiastically (wide-eyed and nodding) said, “That sounds really good. That sounds like exactly what I need.”

I honestly feel like Mike’s intelligence and need for cognitive stimulation are what are going to help him reconstruct pathways in there. He’s eager to occupy his mind, solve problems and answer questions. That’s not to suggest that Mike will be the way he was before. I really don't think that's in the cards. However, I think Dr. Andrews may be correct in his assessment that Mike will be more autonomous than his current condition would lead us to believe.

Right now Mike is constantly restrained in his bed so that he won’t just get up, walk somewhere and hurt himself (his wrists aren’t tied, but he has on a vest that ties his torso down). Just to ease your minds, Mike’s not upset by this. Whenever we explain to him that the vest is a reminder that he is not supposed to get up by himself, he nods and says, “right. Good idea.” However, regardless of how “ok” with this Mike is, the reality is that he’s unpredictable and is a high maintenance patient simply due to the short-term memory loss. My wish is for him to acquire skills to help him to function in some kind of routine day-to-day in our home -even if that means having a nurse at home all the time. If Mike’s happy and safe and at home and it’s in Baxter’s best interest as well, then it’s all good.


Anonymous said...

are kids allowed in the room? think i could sneak in w/sylvia in the sling?

typing 1-handed so can't say too much cept we loive u and miss u and think about u all the time. wonderful to hear your voice ither day

xo marianne

Dritsas said...

I visited Mike last night, so ask him tomorrow if he remembers. Kevin came by, too. Mike was sleeping when I arrived, so I had a seat and read about senators. Whe he got up we talked for a bit and he was in and out of "normal" Some things made sense and other did not. At times it felt like we were having a philosphical conversation. He did, however, remember that Bush was president (unfortunately) and a few other things.

By the time Kevin showed up he was got close to being "old Mike" and was remembering quite a few things and joking around. Then he got tired went to bed.

PS: There are two fudge Reese's Pieces bars in the basket on the window shelf. One is for you, Danna, so don't let him claim memory loss and say they are both for him ;)

Peter said...

What Jae explained reminded me about what a neuropsychologist once told me about the compensatory mechanisms of the brain -- how we all have inefficiences and somehow other parts of our brain take up the slack to work around them. As I recall, difference in learning style (some people are visual, some are verbal, etc.) is a manifestation of this kind of thing. Given Mike's overabundance of brain capacity, and even considering what might have been done to it in college (I speak, of course, of the overuse of brainpower due to all of the learning), I have little doubt he will find good work-arounds at Magee. It sounds like he's been finding them on his own already.

The Brain said...

Marianne - no kids under 13 allowed in the NICU. Honestly, you don't want Sylvia in there anyway. It's an infection haven. Lots of very sick people.

Dritas - funny tidbit: I mentioned to my sister something about a guy named "Dritsas." She said, "Wait. It's Dritsas? Not Dr. Itsas? I kept wondering, who is this Doctor that keeps posting on the blog, and why doesn't he have any medical advice on the situation?" I laughed really really hard. Thought you would appreciate it, too, Dr. Itsas.

x0 danna

csm said...

awesome post. glad to hear it was a good day and that he's understanding some of what's going to be happening.

do you know if he's expected to be tired after radiation? i don't want to visit if the dr's say he'd likely not be up for it... just don't know what to expect. if you could make suggestions re: what to do, i'd sincerely appreciate it. :-)

meantime, weather for thurs. is supposed to be sunny/clear. i can cut your lawn if the grass is getting out of control. lemme know. remember-- no gardening for me... just lawn. gardening = worms... and worms + susan = very loud screaming.


mary said...

When is he scheduled for radiation today? Jim and i wanted to stop by sometime between 11:00 and 2:00. Do you still need a Polaroid? I can bring one by today. I'm trying to think of other manipulatives. Legos? or are they to small given Mike's vision issues? Play-doh? Rubix cube? I've got a house full of building toys, would they help?


The Brain said...

Susan - I think he might be tired after radiation, but before shying visitors away, let's see for sure. I know he likes having loving familiar voices around, so I would say visits are welcome until we learn that the radiation is indeed too tiring.

Mary C. - Yes, indeed - building toys are welcome. Legos might be too small, but larger building objects might be good. I'm bringing playdough today. And yes, if you could bring your polaroid, that would rock. Would you happen to have film? I know they "say" he's going to go for radiation at noon today, but I never know what that means. If you arrived closer to 11, that would probably give you a nice visit before they ambulance him over to the other building.

Dritsas said...

Dr. Itsas? I LOVE THAT. That is sooo going to be one of my master of disguise alter egos.

Heide said...

Can those photos of the three of you be any cuter?? O-M-G. The look on Baxter's face is precious.

Danna, if you give me the original, I can scan it in and print a mega sized one out here at work. It might be nice to hang in the hospital room.


The Brain said...

Heide, that would be fantastic!

Anonymous said...

danna...it's mike weissman...i just found out that all this was happening. i've read this entire blog in one sitting and i'm just amazed at the strength and love that is YOU. you're so strong and incredible and smart and beautiful. mike's no slouch in these departments either.

i have a polaroid and film. i will bring it down tomorrow afternoon.

i'll read the other posts first to make sure you don't already have one.

big hugs