4.30.2006

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.

4.29.2006

Saturday, April 29, 2006


[Photo at left: Mike's hospital room this afternoon - filled with folks. At right: Did Mike let the cat out of the bag that Bob has a "friend" named Wendy? Look out Miss Wah.]

Note: Please read the comments posted in response to this entry for some helpful observations from Anne and my response regarding how to best interact with Mike. If you're nervous about seeing him, visiting with another friend is a nice way to diffuse the situation, too. Even I appreciate not being alone with Mike all day, but having someone else there to help ease the interaction. It's quite a natural feeling.

Today Mike had a really good day.
No - no short-term memory still. Yes, still hallucinating and talking nonsense from time to time. But he was alert, had a great appetite (even requesting cheese fries in the afternoon), up in the chair from 12-2 pm, joking around, tapping his feet to music, and enjoying the warm and friendly company of the many loving friends who visited him today. Sodium’s normal (137), temperature is normal (though poor Mike was shivering most of the day. Getz’s theory: he’s so used to having a fever that 98.6 is chilly for him. Seems logical to me.)

The day was a constant stream of visitors, from Karen Getz in the morning, followed by Dritsas (or, as my sister calls him, Dr. Itsas), then me, Tracie and Bob, Tom-tom, Betsy, Kathy C. from Discmakers. Kevin and Beth, and Jenny S.G. from old Annenberg days. We all cleared out around 4:15 pm to let him rest, and a couple hours later, Anne L. joined him for a dinner date. What a great vibe in the room today. Lots of laughs and love.

I decided to post the week’s visiting schedule up on the bulletin board in his room – a nice reminder to the nurses/docs/techs caring for him that there are a lot of people who will be in and out checking to be sure than Mike is well cared for. It also provides a clear picture of how great of a person Mike is – given the huge number of people looking in on him from day to day.

It’s funny how people have been so concerned that Mike needs to have the best neurosurgeons around (which he does) and yet, Evans and Andrews only affect Mike’s life when he has procedures or complications. The rest of the time, Mike’s quality of life is completely (or mostly) dependent upon the care of nurses and techs who bathe, feed, move, and dress him. So, be good to them. Be kind. Be appreciative and deferential. Show them the love. Unless, of course, it’s Vince or some other bum nurse – then punch them in the nads (how do you spell nads, anyway?).

Today’s nurse, Denise, was really sweet and will be with Mike again tomorrow. She thought Getz was Mike’s wife… but that’s ok. She was thoughtful enough in the afternoon to tell me as I was chatting with Jenny in the hallway (and a crowd of folks was in Mikes’ room) that she feared Mike was getting sleepy and might need a break from all the action. I appreciated that as it indicated that she really was looking out for what was best for Mike. The two techs working with Mike today were charming and funny (one of them helped get me the # for the nurse supervisor to tattle on Vince on Friday). Also, one of them – very pretty young woman - had seen Josh (introduced to them as Mike’s son by Vince the f*&king genius) and told me she though Josh was b.e.a.u.t.i.f.u.l. Then she asked if Josh dated black girls – at which point, “sleeping” Mike’s eyes opened wide and he laughed.

Some fantastic person placed a notebook in Mike’s room to serve as a visitor’s log. It’s a great place to write down general impressions and stuff you may have chatted with Mike about over a meal. And Kel and Di left two huge solid chocolate aspirin for me. I took a huge bite and it got me through the day.

Couple of funny Mike-isms from today.

First of all, in an awesome moment, when Tracie and Bob came in, I congratulated them and then Mike did the same. “What are you congratulating them for, Mike?” I asked.

“The engagement!”

Given that they got engaged about 2 weeks ago, this is either a fantastic moment of lucky guessing – or he actually was able to store that piece of information – which would be remarkable.

As Bob and Tracie were on their way out the door, Mike asked Bob if he had any new stories from “Wendy.”
“Who’s Wendy?” I asked on Bob’s behalf. Mike responded with some random stuff…then said clearly,
“You’re going to be receiving some emails from wendy7@aol.com.” Then, to Bob, “She is very complementary of your style.”

While Drits was there after lunch, I played some Dianne Reeves on iTunes. Mike was grooving to “Straighten up and fly right,” doing some hip hand gestures, and smooth dance moves as he mouthed all the lyrics. He was definitely performing just for us.

It’s interesting to note how folks react to their experience visiting Mike. Some folks are devastated by it and others are happily surprised at how well he’s doing. Tracie and I were joking that he was Mike, but with a little glitch or something. “Mike 2.0,” Tracie said… to which I added “or Mike DOS.” But then talking with Betsy on her way out the door, I thought differently of it. She thought Mike was really great and that the 2.0/DOS analogy didn’t fit at all. It's fair to say that the core elements of his personality are the same: low-key, positive, content, always joking, always making the funny. So, I suppose that when it comes to those subtle elements that comprise a person’s identity – or soul – or whatever… Mike is there. It’s the more primitive functions that his body is having trouble with.

4.28.2006

Friday, April 28, 2006

Thank you for all the kick ass advice regarding the nursing situation (It's taken care of now and Mike's nurse for tonight is the best nurse he's had thus far).

Important: Mike's in a *new* new room. 6604b at JHN (9th and Walnut). The other room was too removed from the other 6 step-down rooms. It was designed for patients with infections etc who need to be separated from the others. It was the only thing available when Mike was transferred there on Wed. New room is great!! Shared with a roommate, but I would actually prefer that - more traffic coming in and out means more people seeing if Mike is ok. Sunny: nice huge windows facing east and big fat windowsill to place things on. Right next to nursing station.

Got to JHN (to his old room 6613) at 11 am to find a dreadful sight: mike practically naked, with compression boots pulled off, EKG wires pulled off, with an accident in the bed. I was livid. I immediately got the nurse (not Vince today) who was very responsive and felt terrible that Mike was in this state. She had been in just 15 minutes prior to get him cleaned up, but in that 15 minutes, he had proceeded to sabotage himself by getting antsy and pulling at things. That room was NOT the right place for him. Too far from everything given his condition and impulsiveness.

Saw Dr. Andrews who showed me Mike's MRI from last night. S.F.T. is growing like a freaking beast. The cystic parts (on the top, pressing into the fornix and on the side pressing into the hypothalamus) are much bigger than a month ago. The cyst on the top is like a big mushroom top, pressing right into Mike's short-term memory processor - and it's easily 2X what it was a month ago. Current plan is for Andrews and Evans to do a drain of the cyst with a needle on Tuesday. Hopefully this plus radiation will give Mike relief.

In the meantime, Mike's still feverish, and of course the Infectious Diseases docs have to run a bazillion tests to see what's brewing (if anything) but I'm convinced they're going to find no infections. I firmly believe the tumor itself is directly responsible for pressure on the hypothalamus resulting in fevers.

Told Dr. Andrews about shitty shitty Vince. Andrews said we'll just make sure he doesn't get assigned to Mike again. Also got in touch with nursing supervisor about Vince. He appreciated the detailed information and apologized for Vince's behavior. Evaluations are coming up, so the info was very much appreciated. Mentioned displeasure with Vince to several nurses (including Andrews and Evans' main nurses, Kelly and Lauren) and it seems it didn't come as any surprise.

Kelly and Lauren also told me I can ask that certain nurses not take care of Mike and I can also demand that he be turned in his bed throughout the day to avoid skin breakdown and request that he take ALL meals sitting up in a chair. I've started requesting that he eat meals sitting in a chair and encourage you to do the same if you're with him at mealtime (granted he's not running a 104 temp or something). It's a freaking ordeal to get him into a chair (with the 1,256 wires and tubes he's got), so if he's pooped it's understandable that the nurses won't push for him to get up. However, as his advocates we can certainly ask that that be a priority.

Today Mike was alert and funny and had more of an appetite. Sodium is finally under control back in normal range. Short-term memory doesn't exist, though. He was up in the chair for 2.5 hours. Started getting sleepy and very confused around 3:30 pm. Kept thinking he saw people in the room: Scott Greer and Meh. Favorite nurse practitioner Judy took out Mike's soutures today. He heals up so fast it's amazing.

I got so tired of seeing docs, therapists, and nurses ask questions of Mike to which he would provide inaccurate answers that I posted the following sign above his bed:


Dear Nurses,

Mike’s Overbearing Wife’s
Cheat Sheet

  • Mike’s 38 years old with a 16 month old son, Baxter.
  • Diagnosed with Brain Tumor just 6 months ago.
  • Has had 9 surgeries in past 6 months.
  • Mike has little if any short-term memory.
  • He is not a reliable person to ask about his own condition – at all.
  • He is not an accurate source of information regarding whether or not he has:
    • Eaten or drank
    • Taken his meds
    • Had a BM
    • Had headaches
    • Seen the doctor today
    • Been up out of bed today
    • Or even if he’s been bathed.
  • [He will answer these questions confidently and the response is most often WRONG.]
    • His ability to self-report pain, body temp etc is also questionable. With a 104 fever, he says he’s just peachy.
    • Not able to feed himself. Mid-meal forgets he’s eating
Thank you for taking good care of him. He’s my best friend and this has all happened very quickly.

Sincerely,
Danna (the wife)

calendar glitch

Ok - something happened between yesterday and today and all of next week's afternoon visits to mike disappeared from the calendar. I tried to put them all back in as best as I could remember... but please check to confirm that you're in the right time slot. x0x0 danna Off to the hospital right now. Mike's nurse is not Vince today. Thank gosh.

4.27.2006

Thursday, April 27, 2006

[Photo taken at Bethany Beach, MD in September 2005]

Today Jae (my sister) and I got to Mike’s room (6613 Jefferson Hospital of Neuroscience at 900 Walnut Street) around 1:15, anticipating that radiation would be done. Mike’s very unhelpful nurse, Vince, said that he was only just (at about 1 pm) informed that Mike was scheduled for radiation at noon. Later info suggested that the radiation info had not been communicated to Mike’s nurse for a reason: Mike had spiked a fever (102-103) in the morning and the nurse practitioners wanted to verify that it was still ok to go ahead with radiation with a fever present. Ultimately, the docs said radiation is a must and he was taken for his treatment at 2:45 pm.

Why do I think Mike’s nurse was particularly unhelpful? When I arrived, I had several uncomplicated questions: How much had he eaten at breakfast? What were the results of the CT scan from the night before? Who should I talk to to learn about the CT scan? Mr. Vince didn’t know the answers to the first 2 questions and told me that here at JHN, things operate quite differently than they do at Gibbon’s NICU, namely in a greater lack of communication between doctors, nurses, and patients.

“I’ve been working here 6 years, and I’ve never figured it out. It’s just the way it is,” said Vince. Funny thing is, Vince was the only particularly unhelpful person I have encountered over there. Perhaps his sweeping generalization is designed to lower expectations so that he can continue providing inadequate information. Bullshit. I called him on it in front of the nurse practitioner, asking if he had any plans on feeding my husband the lunch that was sitting still covered over on his side table (currently Mike can’t/won’t feed himself). “If I didn’t show up, was anyone going to feed his lunch to him?”

“That was the plan,” said Vince.

“It certainly doesn’t seem that was the plan. Considering the fact that no one can tell me if he ate anything for breakfast…”

Within 20 minutes, the tech came in, told me she was the one who had been with Mike at breakfast and that all he had was OJ. She also told me that they are now (perhaps following my chat with Vince) required to include in the report specific details of how much Mike ate. Good. Dammit.

In a fortunate coincidence, our favorite nurse practitioner from the Gibbon building, Judy (who has been with us since way way back in January) began her 4-month rotation at JHN today. Thank freaking G*d. When I found her she had been on the phone for an hour with various docs about Mike’s condition. She works directly with Evans and Andrews and was the nurse who watched as Mike spun out back in mid-March, calling the NICU from home just to see how he was doing after her shift ended. She also told us today that Mike was her favorite – she had the luck to meet charming Mr. Young back when he was all himself: funny, quick, kind, and very grateful for their attentive care.

When Judy went with Dr. Andrews on rounds this morning, apparently he said to her, “Boy do I know someone who’s going to be happy to see you!” (meaning me). I had told Andrews yesterday of my frustration with moving to a whole new place where we had to start over with nurses. It tickled me that he understood this, remembered it, and thought to relay it to Judy.

Mike’s condition according to Judy (as of 3 pm):

Mike’s been having high fevers in spite of three separate antibiotics that he’s receiving via IV. They are starting him on three new antibiotics today (also through IV). His sodium is too low (129). They are going to give him a large stress dose of hydrocortisone (steroid that mimics cortisol) and give him a chest x-ray to check for any infection. CT scan from last night shows that the fluid collection on the right frontal lobe is reabsorbing well. His ventricles look great (no hydrocephalus, so it appears the VP shunt is working). However, the cystic component of the tumor that is on the top pressing up has grown – even over just the past week. This alone could be wreaking havoc on the hypothalamus – giving him fevers, making him tired, changing his appetite. Tonight they took him for an MRI. (Side note: Since November, Mike’s had well over 35 CT scans and MRIs. Holy radioactive brain batman.) We’ll learn more about these latest developments tomorrow. Given the speed with which they’ve conducted these new tests, I know they are on top of it.

Notes to friends:

Please read the latest blog entries prior to your visit to Michael. It will help you understand what to expect and it will help me speak to you about your visit without having to provide backstory.

When you visit Michael, if he continues to be the way he is now, he will likely nod off throughout the visit. He’ll likely remember you (your voice) and your nickname and be able to ask about your spouse/kids/job.

What kinds of things can you do when visiting? Encourage him to drink (particularly “Boost” the protein drink that is helping him get some calories in). Ask him is he’s cold/hot. Give him his stuffed lion (Hobbes). Talk to him about your day and mundane stuff going on in your life. If he’s hard to rouse, don’t be afraid to say something like, “Hey Mike, can you open your eyes for me? It’s me, blah-blah-blah. Just coming to keep you company for a little while.” If you ask if there’s anything you can do for him he will always say no. You’ll need to ask specific yes/no questions. If he gets tired, don’t be afraid just to sit there with him, or even read to him about anything at all – even as he’s sleeping.

And finally...

My sister has observed that I may be quite a bit farther down the road in accepting the reality of Mike’s situation than most people. This is simply due to the amount of time that I spend with him and the extent of the complications that we’ve experienced over the past 5 weeks.

As a result of my being farther down this path, when folks tell me that Mike’s “going to be fine,” or “If anyone can beat this, it’s Mike,” I don’t find it particularly helpful or uplifting. I understand such statements are coming from a place of hope and encouragement, but right now they feel hollow to me - especially if people don’t have all the information concerning Mike’s condition.

As I was describing it to Kevin, if people are several steps behind me down this path, I do not want to be the person to bring them abruptly to the place where I currently stand. And, in fact, I have found that when I do that, it’s met with resistance and even a sense of frustration with what is perceived as my own pessimism or lack of faith in Mike. I have a 16 month old son and my best friend and teammate is in a situation that has very little dignity. If I am going to have any hope of getting through this, I have to keep my eyes open.

I continue to have hope that one day Mike will read this blog and say, “Shut up! This never really happened… did it?” And we’ll all chastise him endlessly. But until that day comes, I need to be cautious and realistic. Please don't take it as a lack of faith in Michael. Mike is an unbelievably strong person. (In fact, given what he's been through, any lesser person wouldn't be half as fun to be around). I'm simply doing what I need to do to protect myself. That's all.

4.26.2006

Wednesday, April 26, 2006 - evening

[Photo: Dr. Andrews. Read more by clicking on his name down below. It brings you to his impressive CV]

Reminder: online visiting schedule available:
Go to: www.google.com/calendar
Follow instructions posted under Tues 4/25 post: "Online Schedule for Mike Visits."
***********************************************************

Ok, so today sucked. Got to his old room (in the Gibbon building) at about 11 am. He was sleepy as hell. Short term memory so poor that he had trouble conversing. Within a half-hour they came to take him over to JHN for radiation.

In the afternoon, they transfered Mike to the Neuro Intensive Care Step-down unit at Jefferson Hospital for Neuroscience - JHN (entrance on 9th street between Walnut and Locust). He's in room 6613, a single room monitored by cameras 24/7.

While it's logical to have Mike in the same building as radiotherapy, I failed to realize how anxiety inducing this move would prove to be. Not for Mike, but for me. Mike has been at the other hospital for about 5 weeks straight (minus a 3 day weekend home 3 weeks ago). I have found some kind of normalcy there inside a situation that it utterly abnormal and unpredictable. At the Gibbon building, I know all the nurses. They know Mike. I know all the residents. They know Mike. They know he is unable to speak for his own condition or report on his own situation in any way. I have created a really good relationship with them. They respect me and I them. Moving to a new NICU meant making new connections with new nurses, nurse pracitioners and residents. It meant rehashing over and over again with nurses, nurse practitioners etc. all of Mike's information. Yes they have his chart, but there's no sign on the front, no Cliff Notes that say, "Nothing this patient says can be taken at face value ... even if he speaks as though he knows what he's talking about."

Nurse: "Any headaches?"
Mike: "Yes. Bad ones."
Nurse: "Any fevers?"
Mike: "No."

Danna: "Actually, both of those responses are false. He's been having high fevers (103-104) up until couple of days ago, and has not had headaches to speak of."

She then asked me if she were to place a pencil in Mike's hand, would he know what it was? I shook my head no (Mike's eyes were closed). Mike said audibly, "Yes." So, the nurse put a cell phone in his hand. Mike, what is this? pause....pause....

"A bottle."

It didn't take forever to get the Neurosurgery nurse practitioner and Mike's nurse on the right page as to his significant deficits, it just required that I fight for the true situation to be known - once again. I posted a sign over his bed to indicate that he has a short-term memory deficit, and Mike's nurse said that she would inform the next nurse about the entire picture that I provided her about Mike's condition. They deal with these issues often over there, so I trust that Mike's deficits are not new to them.

So, why a sucky day? Mike's totally sleepy. No appetite. Barely ate a thing. And in a very disturbing change in his condition, some of his more primitive bodily functions are no longer in his control. I will leave it at that.

Frankly, I find these changes devastating.

Fortunately, I ran into Dr. Andrews at Mike's new abode. JHN is where Andrews works most of the time, so Mike will probably be seeing him more than Evans through the radiotherapy sessions. Andrews is also the person who oversees radiotherapy at Jefferson Hospital of Neuroscience. I told Andrews about Mike's decline over the past 2 days and how it concerned me. Extreme somnolence (fancy word for sleepiness), not eating, not drinking, losing control of certain lower level body functions. Andrews heard my concern and said he's ordering a scan to be done tonight to verify that these changes are not due to some sudden change stemming from hydrocephalus or some other acute reversible change.

Meanwhile, it is clear that Mike is far from being ready for a brain injury rehabilitation progam. His condition is still in flux. I told Andrews that I didn't feel that transporting Mike to and from Magee for radiotherapy at Jefferson would make best use of his time in Magee's intensive rehab program, especially given the fatigue that Mike might experience from radiation. Andrews told me that Mike's not going anywhere for now. In fact, Mike might be camped out there at JHN throughout radiation (6 weeks? yikes).

I did my best to make Mike's new room comfortable - put up pictures he can't see and signs that he can't read. Put a huge photo of Baxter next to his bed. "Who's this?" I asked, pointing at the photo of Bax.

"Brett?"

"Brett Sirota?' I asked him.

"Yeah."

Before I left the room, I turned on the TV for him to have something in the background. On my way out the door I watched as he turned the TV on and off and on and off again. I put down all my bags, went over to help him and redirected his thumb on the remote control to the channel button. I put my backpack on, kissed Mike and headed out the door. Behind me, Mike sat content, turning the television on and off over and over again.

Wednesday, April 26, 2006


First of all, it feels unbelievably good and relieving to log onto the calendar and see that people are starting to schedule their Mike visits here and there. This is a huge help, and a weight off my mind knowing that he has a lot of advocates and loving folks other than me to help him pass the time.

As of Wed evening: Mike has been moved to the stepped-down Neuro-Intensive Care Unit at the other building at Jefferson (where radiation happens). They call the building JHN. It stands for Jefferson Hospital for Neuroscience. It's located at 900 Walnut. Entrance on 9th between Walnut and Locust. Mike is in room 6613 (6th floor). It's a big single room that is monitored by cameras 24/7. The place has one crappy waiting room just opposite the elevators. Fortunately WaWa is basically downstairs.

Left a message with one of Drs. Evans and Andrews nurses requesting a sit-down family meeting with one or both of them upon their return from the neurosurgery conference in San Fran. She said it shouldn't be a problem and that Evans is really good about making these things happen and following through with them.

Talked to Mike's case worker at Jefferson today. She's the one who coordinates all the various aspects of his care - getting him transfered to a new place, getting him admitted to Magee, and figuring out how to arrange transportation from Magee to radiotherapy at Jefferson each weekday. This last piece is a real bugger. JeffSTAT ambulances could do it (for like $70 each day which they don't think insurance will cover). The case worker asked if Mike's family/friends could meet this need by piecing together a carpooling system. At first I said, "Absolutely." But then I thought, "That's just crazy." Mike's been restrained in his bed for the past three weeks on and off. He is often disoriented as to where he is and if he weren't restrained in his bed, he would surely just walk away. No one of us, or even two of us together, could safely transport Mike to and from radiation therapy in our cars. He's too unpredictable. He might get out of the car, mess with stuff... It's simply unsafe. I explained this to the case worker and she said she'll start brainstorming other creative solutions.

Finally, I want to thank my sister-in-law, Victoria, for a book she got for me that I received yesterday, "The Man who Mistook His Wife for a Hat," by Oliver Sacks. It's a collection of essays by a neurologist studying various eccentric people with neurological disorders. One of the essays, "The Lost Mariner," is about a "charming, intelligent, memoryless Jimmie G. who was a fine-looking man, with a curly bush of grey hair, a healthy and handsome 49 year old. To read it helps shed light on what it must feel like to be Mike right now and to understand the importance of familiar people.

Jimmie G. was cheerful, friendly, and warm." He had his long term memory up until his was about 19, but he could not form new memories.

"...I found an extreme and extraordinary loss of recent memory - so that whatever was said or shown to him was apt to be forgotten in a few seconds' time. Thus I laid out my watch, my tie, and my glasses on the desk, covered them, and asked him to remember these. Then, after a minute's chat, I asked him what I had put under the cover. He remembered none of them - or indeed that I had even asked him to remember. "

"...I found myself was wrung with emotion - it was heartbreaking, it was absurd, it was deeply perplexing, to think of his life lost in limbo, dissolving. 'He is, as it were,' I wrote in my notes, 'isolated in a single moment of being, with a moat or lacuna of forgetting all round him...He is a man without a past (or future), stuck in a constantly changing, meaningless moment.'"

Sacks starts the chapter with a passage by Luis Bunuel:

"You have to begin to lose your memory, if only in bits and pieces, to realise that memory is what makes our lives. Life without memory is no life at all ... Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing."

And yet, Sacks closes the chapter with an extraordinary anecdote. Jimmie G. had been a religious man in his past, and even with no short-term memory, when he entered a Church, he was focused, attentive, and able to recite prayers and seemed fulfilled in the moment of the experience. Sacks writes, "I was moved, profoundly moved and impressed, because I saw here an intensity and steadiness of attention and concentration that I had never seen before in him or conceived him capable of... Fully, intensely, quietly, in the quietude of absolute concentration and attention, he entered and partook of the Holy Communion. He was wholly held, absorbed, by a feeling, an act, an act of his whole being, which carried feeling and meaning in an organic continuity and unity, a continuity and unity so seamless it could not permit any break."

And while Mike is not a religious man, he has his own versions of “acts that absorb his whole being,” - the love and laughter of friends, the ritualistic familiarity of a ComedySportz show, banter with Kebbeh.

You know, I bet if we placed him on stage he could still recite the ref spiel (sp?) without missing a beat. And I guarantee if surrounded by friends, at a Csz show, or goofing with Kevin, he would be completely absorbed, if only for the duration of the experience.

Perhaps Bunuel was wrong – perhaps memory doesn’t make life what it is, perhaps it’s the feelings we experience through memory that make life what it is.

4.25.2006

Online Schedule for Mike Visits


Once again - Thank you CSM! Susan has created a Google calendar where we can all log in and simply input when we're planning on visiting with Mike. (see screen shot to the left)

If this is a nightmare for you, no problem at all - just post in a comment on the blog or simply email me when you're planning on visiting and I'll take care of putting in the calendar. What I don't want is for the calendar to make people hesitant about visiting. It's only there to help if you choose to use it.

Go to: www.google.com/calendar


Login with the email address: 185cranios
(if that login doesn't work, try 185cranios@gmail.com. Both should work)

Password: welovemike

This will bring you to a grid calendar.
Click on the time slot of the day you want to visit Mike (or whatever else you want to schedule).
This will bring up the pop-up window where you can write in your visit.
Where it says "What" write in your name and that you'll be visiting Mike.
Click "Create Event" in the bottom left of the little pop up window. This will save it on the calendar. You should see show up in blue on the grid.
This is all you really have to do.

If you want to write more information and edit the length of your proposed visit, click on "edit event details" on the bottom right hand side of the little pop up window. When done, click "Save" at the bottom of the screen.
You should see your visit scheduled on the calendar.
***********

I have added all the visits that I knew of as of last night. Obviously times are very vague estimates - and length of visit depends on your schedule and Mike's condition. This calendar is just to give a general idea of what days and general times of day people are planning to visit Mike.

x0x0danna

Supporting Kelly's Bike for Sight

Here is a note from Kelly Jennings from ComedySportz:

While at the bank a couple weeks ago I saw a flyer for a fundraising event BIKE4SIGHT. The event benefits CBVI the Center for Blind and Visually Impaired.

I had recently been to visit Mr.. Mike Young and was thinking that if and when he is ever able to move beyond the day to day issues of managing his brain tumor he STILL has the issue of his visual impairment. CBVI is one of 2 major centers in the Delaware Valley that aide adults in adjusting to recent vision loss. It occurred to me that Mike and Danna might be able to find appropriate services there to help Mike adjust to his new perspective.

Coincidentally I have been hoping to get more involved in cycling (I was an avid rider in my youth but haven't been on a bike in almost 20 years)mostly recreationally but events like this help motivate me to ride and push myself harder than I ordinarily might otherwise.

So what?

I'll be doing the Ride4Sight on Sunday May 21 in honor of Mike Young. The ride starts at the Court House in Media PA

I'll be doing the 13 mile "Short Ride"

I need some sponsors, I'm looking to raise at least $100, but more would always be welcome.

I've supplied a link below so you can read up on CBVI and the event. And if you want to join me please do! There are several different routes ranging from a 2 mile "Family Ride" to a Metric Century (62 Miles) Descriptions of the various routes are on the website.

If it encourages anyone to take the plunge...I've never done a charity ride in my life. My bike is a "cross"-Mostly a road bike with some mountain bike elements. I'm no speed demon I average 9-12 mph. I was riding up to 15 miles last summer /fall but the longest rides I've been doing so far this spring are around 6.5 miles.

Here's the link for the event: http://www.bike4sight.org/

Contact Kelly directly if you care to sponsor her ride and/or to let her know if you will be joining the event. email kaj867@comcast.net.

from, Kelly

Tuesday, April 25, 2005

[Photo: Mike and Bax at Dondon and Kathleen's wedding in October 2005]

Not a great day today. Radiation therapy took place at noon. It was quicker than I thought. I think they got him at 11:40 am and he was back at the hospital by 1:30. I was there for a couple of hours in the afternoon and he was exhausted and pretty confused. His nurse said that Mike was exhausted all day and didn't have much of an appetite at any meal.

I tried working with him on one of Baxter's wooden puzzles. It's a farm scene and behind puzzle pieces (the barn door, the truck bed, the henhouse) there are animals' pictures. It was not a success. I showed Mike where a couple of animals were, like the cow inside the barn and the 2 pigs behind a bush. I did the animal sounds and talked about what activities they were doing. Then I replaced the puzzle pieces and asked, "Where is the black and white cow?" He sat and sat and just looked, not picking up any puzzle pieces. "Maybe it would help if I made a cow sound," I said, "Moooooo."

He stared at the puzzle, not touching it and not saying anything. "Mike, what are you doing right now?"

"Trying to make a cow sound."
"How about instead of that, you try to find the cow."
More staring.
"You have to pick up pieces and look for the black and white cow under the puzzle pieces."
He picked up a couple of pieces, including the correct one revealing the cow, but said nothing and put it back. "Mike, what are you looking for?"
"Two roosters."

I think it was frustrating for him. I put the damn thing away and Mike looked pretty down. I asked him what was wrong and he said he was sad because he couldn't remember things. I told him that his awareness of not remembering things in and of itself was improvement over the past couple of weeks. He agreed that was a good thing, but his spirits didn't seem lifted. Maybe I should forget the f&*king puzzles. His vision is so bad, it was probably a bad idea.

I'm finding it hard to balance my wanting to be with Mike and having quality time with Baxter. One person who made this easier for me was Lonia (Mike's mom), who reminded me that on days when Mike's not doing really well and it's not a rewarding visit, maybe I should just go. He's in good care and my attention and time could be better used with Baxter... or for myself. Hearing this from Michael's own mother meant a lot and gave me permission to listen to my heart and maximize how I spend my time. My sister has been trying to remind me of it, too. I actually talked to Mike about it today - how it's hard to figure out who to take care of, him or Bax. But I told Mike that when he's really tired and out of it, I feel like he's in good hands with the nurses and there's not much I can do to help him, so being with Bax seems like the right thing to do. He agreed.

Reminder to folks who are going to visit Mike: Nothing that he says can be taken at face value. Today he told Jessie and Roney that he didn't start radiotherapy today, that it was postponed until tomorrow, and that he had yet to eat dinner (it was 7:00 pm). None of these statements was true. If you get there and he tells you something like this and you are concerned, just ask his nurse really sweetly, "Mike said X. I know he's not really reliable, but wanted to check just in case." They're usually pretty good with me about this stuff.

Radiation therapy schedule and visiting Mike:

Radiation therapy is scheduled for noon every day this week. This means Mike will not be in his room from 11:30 until 1:30 pm. Next week, the schedule changes so that it's at 11:20 am each day. This means he'll be gone from his room from about 11 am until around 1 pm. Just want to make sure y'all schedule your visits accordingly. Know that radiation might make him quite fatigued. After you leave, he might not remember that you visited, but I'm convinced that he'll retain the warm fuzzy feeling he got from hearing your voice and just having you in the room.

Finally, an interesting story...

Mike never talked about his brain tumor. Ever. I mean, we joked about it, but I always felt like he was a bit in denial about how serious it was and how it could affect our lives. I was playing out all the worst case scenarios from the start (which may be the only reason I'm somewhat sane as we find ourselves down this dark road). However, something happened the other day that led me to believe that I was wrong. Maybe Mike did get it.

On Monday, I received the Annual Report of the American Brain Tumor Association, addressed to Michael Young. I thought perhaps the neurosurgery office automatically placed Mike's name into a database and maybe he automatically received it. But that would be a HIPPA (privacy) nightmare. Anyway, I didn't think too much of it and started leafing through the booklet, reading about various research grants and educational activities of the organization. Then I turned to the back of the book where they list all of the donors to the organization. And there, under the $100-$250 contribution acknowledgements was one Michael W. Young.

In his own way, maybe he really got it.

Brainstorming Session for Visiting Schedule


Several of you have asked if there would be a way to set up a schedule to know when folks are visiting Mike so we can spread out the love over days and times. This is a wonderful idea. Of course, we can always use the blog to just write in comments saying, "I'll visit him on such and such afternoon or lunchtime, or dinner" for other folks to get a sense of who's coming when, but that's not particularly user friendly.

Can any of you techno-geeks (said with love) think of a way to have a publicly accessible spreadsheet that everyone can see and enter info into? I figure the rows would have each date and the column headings would have times of day: lunch, afternoon, dinner, and after dinner. People could simply enter their names when they think they'll be visiting. He doesn't need someone at every slot of every day (in fact, that would be total overload) but it would help others to know if there are days when no one has a visit planned so we can distribute the love a bit more.

x0x0x0x0x0 danna

PS: (added late Tues morning) If you haven't read the comments below, please do. Josh provides a fantastic summary of Mike's memory issues, what is happening in the brain, and possibilities for healing. For those who are like, "Who the hell is this smarty pants?" Josh has a Ph.D. in psychology and is in ComedySportz with us. Awesome summary, Dr. Rubenstein. So good to have smart people in our circle of friends.

4.24.2006

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.

Things that might help Mike



Had some brainstorming this morning. (I'm feeling a little manic... Thank you DnD coffee.) So here's what I've got for you: A) hints to help maximize your visit with Mike and B) a few items that he might be able to use.

A) Hints to maximize your visit with Mike (he's still in 9308 Gibbon until otherwise notified).

The speech pathologist who visited a few days ago suggested that because of the pressure on the frontal lobe, Mike has a hard time paying attention and multitasking. We're all used to the old Mike who can talk about 7 different things at once while playing a game on his palm pilot, eating dinner, and watching TV. If you try to get Mike to engage in that many topics/activites at one time, he will go along with you, but I think it may be a little overwhelming.

So - If you show up at mealtime, help him with his food, talk to him about what's on his plate - and remind him what's where (drink, potatoes, fork) and what kind of fun yummy stuff he's got to eat.

When he's not eating, talk about whatever - joke around like normal, but if there are more than 2 people visiting, just try not to overwhelm him with information and too much chatter (i'm still working on that one myself... shocker).

If you show up and the TV is on, ask him if you can turn it off. The clicker is a big white thing next to him on the bed. If the TV is on, he can't really pay attention to anything else. Actually, come to think of it - he was always like this, even B.S.F.T.(Before stupid f*cking tumor).

B) Items Mike might make good use of

(If you're interested in helping get these items to Mike, please post a comment to that effect. The last thing I need is 19 magnifying glasses!)

Borrowing a polaroid camera and film to keep in Mike's room. My friend Jenna (speech pathologist) suggested that we could use a camera to take photos of each person who visits during the day. We can use a sharpie to write the date and time on the pictures (yes, just like the ComedySportz hall of fame!) and in the evening, whoever is with Mike at dinner could review who had visited. Also, perhaps if you're visiting Mike during the day, before you leave you could write a little note saying what kinds of things you discussed with Mike that day. Then, whoever is there at dinner can go over not only the photos, but also what kinds of things you chatted about or did together during your visit.

By the way, I don't think we should feel like these kinds of things are patronizing to Michael. I tell him matter-of-factly that he has been having short-term memory issues and we're trying to help him with various activities and tricks. He's very receptive to this and never seems to resent the help.

Finally, a magnifying page... one of those giant magnifying glasses like the one shown in the picture above. Not sure if it will help, but I know he can read some really large print and he seems interested in leafing through magazines. Thought this could help.

Thanks for all the encouragement and for embracing this situation and not shying away from us. The only thing that would really make this unbearably awful is if our friends found the whole thing so freaky that they backed away. We're lucky so many of you are so weird yourselves that you're willing to embrace our whacky friend Mike. I'm loving you all. So is Mike. Even if he is the president.

4.23.2006

Another lil' detail: Today (Sun) nurses asked Mike to write down...


... a list of places he and I had gone on vacation together. Just a little something to pass the time and occupy his mind. Here's what he wrote:

Vaca spots

Las Vegas (some unintelligible marks) 3 stars

Sacramento (more unintelligible marks) 4 stars.

Yes, those stars next to the city names are ratings, as indicated by Mr. Young to the nurses. The problem is, I've never been to Vegas... and I think we drove through Sacramento once on our honeymoon, and I think it was pretty gross. No offense if you're from Sacramento.

Interestingly, Sacramento appears to be in quotes. Maybe he meant a metaphorical Sacramento. Like some other shithole. Like... the hospital?

Sunday, April 23, 2006



[Photos: (L) Mike posing for sketch comedy group Bad Hair's program, summer 2004. (R) ...and you thought these guys were in charge of the White House. Boy were you wrong. Read way down below, folks*]

*I realize some people (not our sick sick friends, but others on the periphery) might find it somehow offensive that I find humor in the things that are coming out of Mike's mouth these days. Listen, people: If I weren't laughing, I'd be crying. Besides, let's be honest - If we weren't laughing at this stuff, Mike would be extremely disappointed in us all. How does that saying go? It's funny... cause it's true.]

Today's entry is a long one. Mike's condition in a nutshell: Good. Confused. Alert. Content. Sense of humor intact. But confused.

Not a lot of action at the hospital today. As one nurse aptly put it, weekends at the hospital are like “lost days.” Nothing really happens… you're just in a holding pattern until Monday when the bustle starts up again. Hopefully that bustle will include radiation therapy to zap this stupid f*cking tumor. (S.F.T.)

I did accost one of the head residents in the hallway as I am wont to do. He said he imagines we'll start radiation early this week and get Mike stepped down to a different unit soon. The possibility of getting into a rehab program like Magee is less likely if he's still in the high priority NICU. To get that ball rolling, he has to be stepped down.

I'll tell you - I like the residents a lot. They are all good guys (and yes, all guys). But they have this incredible knack for saying a lot but not saying anything at all. I can talk to them for like 5-10 minutes and when we're done chatting I realize… I have acquired zero new information. It's a remarkable talent.

*******

Note to self and others: How Mike is doing on one day is not an indicator of how he'll be doing the next day. Today Mike is quite good. He's still extremely tactile and antsy, but showing more signs of his “old” self in his wit, humor, intonation and expressions.

I asked him a bunch of the standard questions and he answered them pretty well (said the hospital was Thomas Edison instead of Thomas Jefferson, but not bad). Today I told him the story of how a couple of days ago when I had asked him who I was he told me I was his girlfriend and that we didn't have any kids yet. This afternoon, when I told him about this incident, at first he didn't believe me.

“When did I say that?”
“A couple of days ago.”
“Did you slap me?'

Kevin, Diane J., and I had a good laugh.

********

I brought in some of Bax's toys - the kinds with crinkly parts and rattly parts. Mike enjoyed tooling around with them a bit. At one point he was pulling at his wires and I threw him a Manhattan baby Sparkle Dragon (the one Sash and Dee got for Baxter). “Here. Mess with this instead.”

He looked at me with slight contempt. “I know what you're doing.”

“What am I doing?”
“You're just trying to tide me over.”
Kevin laughed really hard, “Boy is he onto you.”

****

Both yesterday and today when I asked Mike how many kids we have he said three.

Yikes. Hell, no.

When I asked what their names were he said there's “little Mike,” and that we don't know the other two's names yet. Uh-Oh. Is this confabulation or premonition? I suggested to him that he's thinking of his own family - with himself and his brother and sister. He responded agreeably as always, “Yeah. Maybe.”

On a similar note, one of the nurses, Cathy, asked if I had looked into getting a sperm sample to have stored for the future. Part of me is like, “Are you in-SANE? Another baby?” But another part of me thinks about the great results Mike and I got with the first one and maybe I do want the option of another one. Someday. Not now. G*d, not now.

********

Today while on speaker-phone with Diana (his sister), She asked how he was feeling. He said he was feeling pretty good and then started another sentence very slowly and deliberately.

“It's weird…to be…. cognizant of an alternate reality.”

She replied, “I bet it's really weird not knowing what's real and what's not.”

He agreed and seemed satisfied that he was understood. I also asked him how he felt about his current situation. He said it was a drag that he wasn't fixed, but that the situation wasn't terrible.

*******

Today rather than asking, “What's the Magee Center?” I asked him where he would be going after he left the hospital.

“Another hospital.”
“What kind of hospital?” I asked
“A fun hospital.”
“Be more specific.”
“A fun brain hospital.” He said.
“What do they do there?”
“Rehab and therapy.'

Well, I'll be…

Anyhow, he's sleeping in the bed right next to me right now. I just like being with him.

******

After Mike ate lunch, we shared a few kisses and I could see the sparkle in his eyes.

Then, all of a sudden, he said, “I can't believe what just happened to us!”

“What happened?”
“We just had dinner with the president, got debriefed and got the boot.
“We did?
“Yeah - I mean, she's our childhood friend, but she's the president.”
“Who?' I asked.
“Anne.”
“Anne who?”
“Not Ladenson. Annie.”
“Annie, our babysitter?”
“Yeah. “
“Truth?”
“Yeah.”
“Mike, she's not the president.”
“She's not?”
“No.”
“Then who is?”
“Bush.”
“No! Still?” He asked.
“Yup.”
“Booo!!… Can't we put actions in motion to change that?” he asked completely honestly.
“Yeah, we can vote for someone else in 2008.”
“No.. I mean… aren't we political insiders? Can't we put actions in place to make sure we win in 2008?'

I explained we weren't political insiders and he seemed a bit down. I tried to preoccupy him with his diced peaches. “Maybe that will make me feel less sad.”
“Why are you sad?”
“Because I just realized we're the same as everybody else. That's not sad?”

Well said.

A few minutes later, I looked over to see Mike playing with one of Baxter's toys, laughing at himself. I asked why he was laughing and he replied, “Here I am, future president of the United States and I'm playing with this stuffed toy!”

“You're the future present?”
“Well, actually, I am president of the United States. I survived an assassination attempt.”

Then later….

“So who's the president, Mike?”
“You. As of right now you are the president and I'm the vice president. You have all the constitutional powers of war. Cause we haven't changed the constitution at all."

At this point, I realize we're stuck in the “president” schema - he's running in circles, doing laps in his brain around all these political concepts. So, why not just play along.

“What kinds of things should we do, Mike?”
“We should get out of Iraq and get the U.N. involved cause we don't want responsibility for Iraq. That's a mess. Depending on how things go in Iraq - we should probably get the World Council to take responsibility for Iran. We should figure out a way to set it up such that the World Council can find a way to take authority for certain countries.”

[By the way, I am sitting in a chair next to his bed typing all of this as he's saying it. No embellishment included.]

“Who do we know in the World Council that can help us?”
“I guess I would talk to your Dad to find out what is the current read regarding who would want to step up. If the UN split tomorrow, how would Iraq and Iran split up?”

A bit later, I was ready to leave and the nurses were in the room. I told Mike and the nurses about how the blog has been helpful in arranging help with various things like lawn-mowing. I told Mike that Ray and Craig from discmakers volunteered to help out. He started laughing really hard - like normal Mike laughing. When I asked what was funny, he said with an emphatic hand gesture,

“Well, it's a HUGE lawn!”
“It's not that big. What lawn are you thinking of?”
“The White House lawn.”

...interesting.

Before I left we got him squared away regarding who is the President and who's not, how we do not belong to the “Bush-Young” family as he suggested. He was very quickly steered in the right direction on these things.

I think sometimes he is literally dreaming while he's awake. Like this time. After we got his whole president-fixation straightened out, he very quickly dozed off.

4.22.2006

Saturday, April 22, 2006 - evening


[Photos: Hall and Oates and a rubber glove. Just what they look like. Duh. Why Hall and Oates and a rubber gove? Read on.]

On the way into the hospital today, I got a call from Mike’s nurse, Meredith, letting me know that Mike’s not having a great day. He started acting a little impulsive and restless late morning and she was sweet enough to call me to give me a heads up. When we (Lonia and I) arrived, they had him restrained with a vest in his bed just so that he would stop trying to get out of bed. Again – mike doesn’t do this stuff aggressively or to be annoying – he just doesn’t remember that he’s hooked up to a gazillion monitors and that he’s not supposed to get up.

Meredith also told me that they had been instructed to skip Mike’s 6 am and 1 pm doses of DDAVP because his sodium has been too low (131-132). Freaking sodium. Decide what you’re doing, will you? I didn’t love the idea of skipping Mike’s DDAVP (which is the medicine they give him to help him pee less and keep his sodium from spiking). Last time they decided to skip it (due to low sodium) it quickly spiked up to too high again.

The nurses today are wonderful. They were sweet enough to stop Dr. Andrews while he was in the NICU to ask if he had time to talk to me. Dr. Andrews is the chair of the department and has been working with Dr. Evans on Mike’s case from the beginning. (Side note: Josh R. got in contact with all the neurologists he knows to ask for a recommendation for the top person in the Philly area to handle Mike’s particular case and they told him Dr. Andrews. He’s been on the case from the beginning, but Evans had more experience with the endoscopic transphenoidal approach, which is what Mike had in November, so Evans sort of took the lead by default).

Anyway, Andrews told me that they are taking things hour to hour and day to day with Mike. The sodium has yet to stabilize (and he said that withholding DDAVP is a wise idea and they will closely monitor sodium to make sure it doesn’t spike right away). They are also trying to get a handle on the fevers he’s been having and trying to make sure they’re not due to an infection in the fluid collection that has formed in the right frontal lobe. Andrews doesn’t think it is very likely that Mike has an infection. I wish he did, because that’s at least fixable. But, the fevers could also be a direct result of the tumor’s pressure on the hypothalamus which monitors body temperature.

I told Andrews that I wanted some understanding of whether or not I should expect to get Mike back. I’ve been trying to take it day by day but at some point I want to be equipped to plan for the future. “Could the neurological issues be due to the collection in the frontal lobe?” I asked.

“Yes, they could certainly be worsened by that pressure,” he then paused and took a breath, “But, have you seen his latest scans?”

Well, yes I had and I knew what he was getting at. Mike has a giant tumor in his head and the cystic component is getting bigger and pressing right into the fornix.

“Yes, I’ve seen it. But no one’s told me if the problems we witness with Mike’s cognition are due to that or to the other ancillary issues like the collection, or the fever, or the sodium…”

He told me that his is the most aggressive craniopharyngioma he has ever encountered. It’s pressing right up into the hypothalamus. He said he doesn’t think that all of Mike’s neurological issues are going to be resolved. But he also doesn’t think that Mike’s not going to improve from where he is right now.

I was crying as I talked to Dr. Andrews and he was really kind in his tone and approach. I told him that Mike in real life is so brilliant and funny and makes our household function right and I needed to know if I was going to get him back. I was speaking quietly, sitting at the foot of Mike’s bed as Andrews stood above us. Mike was watching and listening the whole time we spoke, but didn’t utter a word. When I began crying, I felt as Mike rubbed my back with his foot under the blanket. I looked over at him.

“I’ll be ok, smoosher.”

I looked up at Dr. Andrews who seemed moved by Mike’s gesture to me. “I know what you want to know, “ he said. “You want to know what kind of autonomy Mike will have. And we just don’t know right now.” He paused. “How many kids do you have? Two?”

“Just one, Baxter. But he’s 16 months, so is as much work as 2.”

He sighed and rubbed at his forehead.

I asked him about the possibility of injecting bleomycin into the cyst (a toxic treatment for cancerous tumors). He said that would be the equivalent of starting a forest fire to put out a smaller one. Since the larger component of Mike’s growth is a tumor which would not be reduced in size by bleomycin, then it’s not worth the risk it would pose to other vital structures.

He then said that they have entertained every possible option in Michael’s case. The most reasonable step at this point is to start radiation therapy. There is one thing they could do at the time of the stereotactic radiation treatment to reduce the size of the cyst that’s growing on the top of the tumor. It might be possible to do a one-time drain of the cystic component with a needle at the time of radiation therapy. This has the possibility of reducing the cyst and “freezing” it at that reduced size with the radiation. The only other remote possibility is a shunt implanted to drain the cyst when necessary (like he had implanted in late Jan-early Feb that gave him so much trouble and had some infection brewing). But since it didn’t seem to agree with Mike last time, I think they’re shying away from that.

Today is a tricky one with Mike. He’s very tactile again, pulling at blankets, pulling up his gown, trying to get up over and over as you’re telling him not to. I told him for the 100th time he was not allowed to pull off his oxygen monitor from his finger or they were probably going to tie his wrists down to his sides again.

“That’s no fun.”

“So why are you doing it?”

“Because I’m crazy.”

“No, seriously, Mike…. Why are you pulling at that?”

“Because I’m crazy.”

**********

I told one of our favorite nurses, Cheryl, that mike was super-tactile and messing with everything around him and would she have any paper he could tear up. She said, “Way better than that…” and went into the nurse’s supply closet and got some gauze, some stretchy stuff, a rubber glove blown up and tied, and some other random things. Mike was psyched. I told him I could tell he was bored and wanted something to do with his hands and he agreed. He occupied himself for a long while with these random objects. In addition to actual neurological issues I think the poor guy is just stir crazy. He’s been in the hospital (same room, same bed) for almost three weeks straight. And before that he was in here for 2 weeks straight with only a 3-day trip home in between.

S.U.C.K.

***********

This evening I asked Mike if it would infantilize him to bring in some of Bax’s baby toys for him to occupy his hands. Then I stopped and said to whomever was around (Mike, nurses, Susan), “Wait, is that the right word? What does infantilize even mean?” To which Mike replied, “To make one feel as though he is an infant.”

Ok, then.

“Well, would it infantilize you to bring those toys?”

And then he honestly said with enthusiasm, “No. That would be great.”

*********

I thought I’d help him get some energy out by playing some music on the powerbook (I brought my good speakers in a few weeks back). I asked him if he had any requests and he said confidently, “Funky Winkerbee.”

“What kind of music is that?

“Psychadelic.”

Is that another discmakers client, you DMers? Or is Mike just super geniusy creative?

Then I asked him about what he wanted to listen to and he said Hall and Oates – to which he knew all of the lyrics of every song.

With “Family Man” playing in the background, I asked Mike if he knew where he was. “L.A.” I told him he was in a hospital room at Thomas Jefferson and asked if he knew what part of him they were fixing. He replied calmly, “My soul.”

The nurse and I looked at each other wide-eyed.

I don't know. I think Mike's soul is just fine. It's his freaking brain that needs fixing.

Saturday, April 22, 2006

[Photo: Mike and Bax at Bethany Beach in September 2005, 1 month before he was diagnosed. Thanks to Heather for all the great new photos.]

Today I awoke to the happy sounds of Baxter: "ma-MA? ma-MA?" along with a lot of cheery gibberish. It's a great way to start the day.

I got up, changed his diaper and mid-diaper change thought, 'What is this heavy feeling I have hanging over me?' In the past when this would happen, I'd soon remember the source of stress: a revise and resubmit on an article that I hadn't finished, or a conference to prepare for, or maybe a leaky toilet that needed fixing.

My current source of worry?

I'm not sure that my husband is going to be able to live unassisted for the rest of his life. I'm not sure he's going to be able to live at home again. I'm not sure that Baxter will ever know who his dad really is.

Lonia (Mike's mom) is leaving tomorrow to return to Cleveland where she has a fulltime job as a nanny for 2 children. She's been here for a month and has made this situation manageable by making sure the household runs smoothly and that Baxter is well loved. She does the shopping, laundry, checks for things that need tidying or inventory restocking. And she's just pleasant company in a house that would otherwise be unbearably lonely. And when I break down on the bathroom floor in a puddle of tears, she just comes in and wraps her arms around me without saying a word.

I'm sad she's leaving.

My sister is coming on Monday for a week and then 5 days later, I'll have other people coming into town. So, I'm not without help. But the sense of consistency and routine that we have created for Baxter over the past month is going to be shaken up a bit. He's resilient. He'll be ok.

Something I forgot to write about yesterday. I talked to Mike about the Magee Rehab center when he was particularly alert. I told him what they do there and that there is an inpatient program that he may be eligible for that would include 6-8 weeks of learning how to overcome and cope with certain neurological deficits he now has. His face lit up. “That sounds great,” he said.

“You’re not upset about being away from home for those weeks?”

“Not if it’s going to help me get better.”

I waited about 4 minutes (while I was giving him a shave) and then said, “Mike, what’s Magee?”

“A brain rehab center?” He asked.

Yes sir.

4.21.2006

Can we all just take a moment to bask in the joyfulness of Baxter Young?



It's what I do at the start and end of each day, so thought I'd share this gift with all you captive audience members.






Oh, and these two are old ones, but they made Tomtom and Mary laugh so hard when they saw them that I thought I'd share.

The first night that Mike and I put Bax to bed without crib bumpers when he was 7 months old, we came in before we went to bed to find this sad sad sight. And like any good parents, before we removed him from this dreadful position, we fell onto the floor in silent hysterics, trying desperately not to wake him up.

Friday, April 21, 2006 - afternoon


[Photo: Andre and Marianne's wedding in September 2004 with a whole gaggle of our dear dear amazing friends. I'm hiding in the back with a giant 7 month pregnant Baxter belly.]

To the amazing anonymous person who left $30 and a picture of me at cafe mocha on 10th street (where I blog from in the afternoons) - you rock. What a heart-warming surprise and a great great gift. I'm sitting here right now drinking my free coffee.

Mike is looking good today. Alert, good mood, good appetite, though he really was convinced he had already eaten lunch (he hadn't). The first impression Lonia and I got going in today was a good one. Our friend Mario Fraboni was sitting outside the elevator on his cell phone. He had already been in to see Mike in his room and was making a quick call before going back in to spend some time visiting. When Lonia and I got into Mike's room he said, "Hi! Fraboni's here. He just stepped out but he'll be back." And Mario had been gone from the room for a couple of minutes at least. Very very good stuff.

Here's a funny conversation we had with Mr. Young today that might make you laugh:


“Mike, do you know how old you are?” I asked him.

“47?”

Egads, no!!

“Do you feel 47?”

“I don’t know. Maybe.”

“Well, what year were you born?”

-pause-

“19…38?” he guessed.

"NO!!"

"Really?" he turned to face me, surprised.

“Sweetie, I think you’re thinking of your mom’s birthday.”

“Maybe you’re right.”

Finally, we told him he’s 38 and was born in 1967.

“How old am I, Mike." I decided to try the logical approach.

Fraboni warned him, “It’s a trap, Mike! Don't answer that!"

Mike laughed, “Ummm,” he makes a face like he realized he’s been trapped by his wife. “Well… you look like you’re….”

We were all laughing at his very wise approach to the question.

“…in your early to mid-thirties?" He said shrugging and smiling sheepishly as though that was actually a compliment.

“No! No-no! Here’s a hint, Mike. I’m 8 years younger than you.”

“So…” He’s really hesitating now, “You’re in your mid to late thirties.”

“No! I’m 30. Just turned 30. So how old are you?”

“41.”

-sigh -

Another tidbit:

Fraboni asked Mike if he remembered going to the monster truck show years ago.

“Yup.”

I was doubtful that Mike actually remembered and asked I Fraboni who went. Fraboni replied, “Me ...and ... Kevin…”

In between bites of his lunch Mike looks up and says, “and Tom.”

Which was true.

Long-term memory (stuff from before like a year ago) is still really really good. It makes me so happy to see it. On Fraboni's way out the door, Mike shook his hand goodbye and Mike said “ber.”

Fraboni lit up. “That’s right! Ber!”

“Mike, what’s ber?” I asked.

“It’s Fraboni for ‘bye,’” he replied.

By the look on Fraboni's face, I could tell this was a good good thing.

Later this afternoon: Met with a speech pathologist while Mike was sleeping. She said that the memory deficits we witness might also be frontal lobe problems as they may result from a lack of attention paid to information when he recieves it. That actually makes me feel better because the fluid collection in the frontal lobe is something that is likely fixable - even if it's brewing an infection. If, however, the short-term memory loss is a direct result of the tumor pressing on the fornix (in the midbrain region connecting the hippocampus and hypothalamus where the tumor is) then these deficits might be permanent.

Talked to Dr. Evans this afternoon by phone. He was at the airport with his kids on his way to a national conference. Dr. Evans said our immediate goal is to monitor the size and make-up of the fluid collection in the right frontal lobe. Apparently there is fluid there both on top of and underneath the skull. The cultures that will determine whether or not this area is infected with be done in the next couple of days. Evans is still hoping to get mike right into radiation in a few days, assuming all infection is cleared out.

I sort of forced Dr. Evans into a box and asked him for his hunch regarding Mike's neurological problems improving. He thinks the impulsive, agitated, and tactile behaviors are likely going to be resolved as they are more indicative of frontal lobe problems. He isn't as optimistic about the short-term memory loss. That is such a classic component of the fornix's functions that it would be very logical for that to be a permanent problem given the location of the tumor. That being said, the speech pathologist's point about the frontal lobe being responsible for attention to information at the time of information encoding into memory is encouraging.

I mentioned a sit-down family meeting with Dr. Evans and he seemed very open to it. He suggested that we let the "dust settle" a bit in terms of this frontal lobe collection. That makes sense to me. No sense planning ahead without an understanding of the acute situation at hand.

Gave Mike a nice shave today, cleaned him up and got him to brush and floss his teeth.

I noticed after about 3 minutes he was still brushing the bottom teeth. "What about the top teeth?" I asked. "I am brushing the top," he said. oy yoy yoy. Flossing was another minor debacle. His vision is so bad and he's got so many monitors attached to him that he kept dropping the floss and trying to floss with the wire from one of his monitors. We got through it, but man -- these are the kinds of things that no one thinks about. Anyway, he felt nice and refreshed when it was all done.

And you know what? At 3 pm I asked Mike who had visited today and you know what he said?

"Mario Fraboni?"

And Mario had left about 2 hours prior. I almost peed myself with joy.

Mike, we know you're in there. Come on out and play.

Friday, April 21, 2006 - morning


Very late last night, I talked to one of the residents who has been following Mike's case. It was 11 pm and Dr. Evans was going to be in the O.R. for another 2 hours. What a life. Yes, ours is complicated right now, but 16 hour days - 7 days/week? I'm not sure that's any better.

The resident explained that they are still approaching Mike's situation in as an acute issue right now. Rather than thinking ahead, they have to deal with immediate issues, which may be why I haven't gotten a real sense of where we're heading. What are the acute issues? High fevers, fluid collection in the right frontal lobe (which they sampled last night directly through the shunt - no spinal tap), possible infection, monitoring the cystic component that is responsible for the hydrocephalus since it's blocking the 3rd ventricle (which I mistakenly thought was a new thing. It's not. They've known.) So the fact that there's little we seem to know about what life has in store is for a reason.

I'm still trying to schedule a sit down with doctors.

If there are questions you would like answered regarding Mike's situation, feel free to post them or email me. When we sit down with the docs, I'll consolodate and see what answers I can get. Some big ones we already have answered, just so we're all on the same page:

Mike's vision is not expected to be restored. Double vision may be corrected with lenses, but the reduced fields are a permanent deficit.

Mike's endocrine issues are permanent. He'll never make cortisol, thyroid, testosterone, growth hormone, or the hormone to regulate electrolyte balance on his own. Meds are forever, baby.

The tumor is considered inoperable except for the possibility of a radical, risky surgery in the future if his life is immediately threatened or his quality of life is particularly dismal.

Radiation is not expected to shrink the tumor, just stop it from growing, though it may shrink the cystic components since they are fluid-filled and not solid.

What we don't know: if mike's neurological deficits are permanent. That's the big one. The really big one.

4.20.2006

Thursday, April 20, 2006



[Left: Photo of Mike sleeping with Hobbes this afternoon. Right: Photo of a fluid collection post-craniotomy - not Mike's... read on]

Mike was more himself today. He was upbeat, showed a sense of humor and was more alert. His memory does not appear to store info for longer than 1 minute. There is still no integration of info into longterm memory.

This morning, Dr. Georgia was there (love her). She recommended that I request a family sit-down meeting with Mike’s doctors to assess where we are and where we’re heading. I’m working on arranging it.

In the meantime, couple of new pieces of information. First, the tumor has formed a cyst on the top of it that is pressing up into the brain. Second, there is a collection of fluid under the right front bone plate that they fear may be infected. [See photo on the right of a similar situation post-craniotomy. Not Mike’s though. The inverted bulge on the right is a pool of fluid under the skull] It’s common to have this collection after a craniotomy, but it usually reabsorbs. From what I can gather, Mike’s has not reabsorbed. Infectious Diseases docs came today and are putting Mike on hardcore antibiotics through his IV. They’re also doing a spinal tap to test for infection (since spinal fluid and brain fluid are in communication with each other it would likely show up there.) An infection would explain Mike’s ongoing spiking fevers (104, 102, 103 etc). Needless to say, radiation is postponed because radiation in the face of infection can be catastrophic.

It’s interesting that there is this frontal lobe issue now. 2 days ago when Mike was really haywire, one of the nurses described him as acting “frontal.” “We usually see these kinds of behaviors in patients with trauma to the frontal lobes,” she said. These behaviors include acting impulsively and being extremely fascinating with the sense of touch – pulling at wires, touching this blankets, reaching for things, ripping paper apart (all of which he’s been doing). Today, even while he was happier and more sort of Mike-like, he was oddly tactile, rubbing his stuffed animal like a toddler does a blanket, and pulling at his blankets repeatedly.

Today we had a lot of nice visits with Crazy Susan Murphy, Josh (who Mike correctly referred to as “Jorsh), Diane J. (tomtom’s mom), and Kelly. When Diane left for the cafeteria to get Mike some pie, about 30 seconds later I asked, “Who was the woman who was just here?” He replied, “Mary Roney.” And no, I am not kidding. Dude, he’s hooked on Roney! I then told him it was a dear friend’s mother. He thought a second.

“Ma Roney. Steve Roney’s mom.”

Roney, is there something I need to know about you and my husband?

x0x0 danna