Wednesday, May 31, 2006

[Photo: US3 Cantaloop - one of the many songs to which Mike quite adeptly shakes his groove thang while sitting up in the chair]

Mike is up and alert today. He fed himself lunch and was even reaching for his orange water bottle several times throughout the day. His nurse, Nicole, helped get him into his chair and I went to go get mike some ice. When I came back, he had already eaten half his carrots and he had taken the straw from his juice box, had put it in the box, and was drinking it.

When he was done his lunch he pushed his tray away from him and scooted towards the edge of the chair. When I asked what he was doing he said he was getting back into bed. I kept trying to delay him until I could clear his path and be there to help. I turned my back as I threw some trash away and I turned back to see him starting to get up.

“Mike! Wait wait wait!”

He laughed at me and shook his head.

“What is that? Why are you laughing at me?”

“Cause,” he said sitting back down in the chair, “It’s like this far” with his hands about a foot apart from one another. He was right. That is about how far it was.

“Ok. Fine. You do it. But I’m going to stand here.”

So, I stand and watch and Mike stands straight up, takes two steps, sits on the edge of the bed, lays down, and hoists himself up closer to the top of the bed using his legs and arms to scoot him.

Very impressive.

I also asked if he’d like his phone by him on the food tray. He hasn’t had his phone close to him in 2 months, because it didn’t seem like he was well enough to talk on it. He said he would like the phone on the table. I got Mike’s phone number from the nurses’ station and called his phone with my cell phone while I was in the room to make sure it worked. He answered it, laughing at the ridiculousness of my talking to him on the phone while 4 feet away from him. The phone has a really weird ring, though. More like an alarm clock than a phone.

“Are you going to know that weird noise is the phone ringing?” I asked him.

“Well,” he said raising his eyebrows, “It’s a weird sound and it’s coming from the phone,” with an overdramatic gesture toward the telephone, “My guess is that it’s the phone ringing.”

Ok wise-ass.

Yesterday, while Michaela was visiting, I told Mike about some friends of ours who are just 11 weeks pregnant…with twins. He was thrilled. SO excited!

A few days prior, the couple had been in the room and had told Mike the news themselves. And he was thrilled then, too. Eyes opened wide and truly overjoyed with the news. The truth is, I’ve told Mike about this particular pregnancy (which I’m not sure I’m allowed to leak, so stay tuned) about 12-15 times over the past 6 weeks. And every time he gushes. (Yes, I got advanced notice way early because the parents-to-be thought I could use some fun and happy news given the S.F.T.).

Well, when these friends were there a few days ago, one of the pregnant pair said, “We love coming to see Mike because we get the thrill of sharing the news for the first time every time. Whenever I want to talk about it with someone without making them sick of hearing about it – I just come see Mike!”

I had quite a good laugh about it. Yesterday, I decided to share this story with Mike. It seems like it could be kind of a tricky thing - making fun of his lack of short term memory to his face…. But Mike is Mike. He’s funny and sees comedy in all things. So, after I shared the “they’re pregnant with twins” news with him (again), and he replied, "Oh my gosh! Twins! That's awesome" (again), I told him (for the gazillionth time) how he’s been having some short term memory issues and how everytime we tell him about their pregnancy, he’s as excited as he was the first time he heard the news. He nodded and smiled a polite smile.

I then told him what one of the parents-to-be had said – that whenever they want the feeling of sharing the news for the first time to an excited listener without making everyone sick of hearing about it, they come to share the news with Mike. Mike had a hearty laugh at this that actually threw him back a bit in the chair. “That’s awesome!” he said.

That’s why Mike is amazing. He sees the humor and the positive side throughout this process. He’s never grumpy or pissed off. Sure, you could attribute that to the fact that he has no knowledge of how freaking long he really has been in the hospital – but I think it’s more about who Mike is as a person.


He has a new roommate in 6606. An older Greek gentleman who’s hard to understand. Mr. Koudis is his name. He asked me a ton of questions – Where I’m from, what I do. Then I asked how he was, “Bad. Very bad.” He said as his daughter shook her head and rolled her eyes. “I used to do wood working, with my hands,” he said. As I took a moment to figure out what “wuh-wuk” was, his daughter whispered the translation my way, "woodwork." He continued, “Now I can’t even touch my tools.”

A lot of people can’t touch their toes, I think. Oh… tools. He puts his hand to his forehead, “I’m going to go mad. I am. I’m going to go mad crazy.”

“No you’re not.” I said, “You’re going to get better and find other things to do. You need to have a chat with this guy,” I said pointing towards Mike asleep in the bed, “You need to stay positive. It’s good for you.”

I sometimes think about how when Mike gets well (not if, I’ve decided… it’s when) his vision is probably not going to return. This means he won’t really be able to enjoy movies like in the past, he won’t be able to drive, he won’t be able to appreciate good artwork. He’ll have to relearn how to get around the house, how to navigate the kitchen.

But, I know that Mike is going to be happy. It will take a while, but he will be. I can already picture him doing things like playing more guitar, listening to lots of great music, NPR, books on tape. Figuring out how to cook and bake in his kitchen again. Enjoying the company of good food and good friends like he always has. And he’ll drink it all in. I know it. Yes, there will be times when I’m sure he’ll be down on his luck – but he won’t let himself stay in that place. That’s just not how Mike works.

Thank gosh he’s who he is.


All day I've been trying to get in touch with Dr. Evans or Andrews about the plan for Mike. Radiation is about done - I think he has about 3 or 4 left - and I want to know where we go from here. Straight to Magee for brain injury rehab? Directly to the O.R. to aspirate the cysts?

One of the n.p.s who rounded with Andrews this morning - the only n.p. I've never met - gave me some odd info... that Andrews thinks Mike's doing great and he's going to send him home to recover before aspirating the cysts. Judy, the n.p. who has been following our case since March, was like, "What? That can't be right. He must have meant straight to rehab."

I've learned not to jump to any conclusions until I hear the deal straight from Evans and Andrews.

UPDATE as of 8:55 pm: Andrews called me from his home. Radiation therapy is done on Tuesday. He said that he would like to see Mike recover a bit before we aspirate the cysts - as much as a month. I was quite surprised to hear this news. I thought they wanted to aspirate asap. However, Andrews made the case that the swelling in the midbrain region is significant but has decreased with the steroid (decadron). Since the steroid has bought us some time, as Andrews pointed out, there's no reason to rush into another surgery when we can take a more conservative approach and let Mike's brain heal for a few weeks.

Bottom line: He would like to see Mike start the rehab program and then have the cysts drained. He said we're going to get the ball rolling on the plan for Magee tomorrow by talking with the brain rehab people and with the social workers.


Finally, I thought you would all get a kick out of the love that the nursing techs have for Mike. Cammie, Shamell, Martia, and Chris all love him. And as one of the nurses said, "The girls are very protective of Mike." [Meaning, the techs]. One example? When his last roommate complained about the lack of privacy, the number of people in to see Mike and the music always playing on Mike's side of the room... Cammie was like, "No you DIDn't just say that about Mike. No you DIDn't." Then she explained that when they bathe him, feed him, or anything, they listen to music with him. It's what they've been doing for over a month (since he got to JHN) and that's not going to change no matter what.

When I told Mike the girls were all protective of him, he smiled, looked up at me and said, "Really? Awww.... that's so cute!"


Tuesday, May 30, 2006

[Today's visit with Michaela all dressed in normal person clothes!]

Another good day for Mike. He was not as responsive as yesteray and complained of a headache, but I got him to wake up a bit, got him dressed in a nice shirt, gave him a shave and he ate some lunch with me. We also had a nice visit with Michaela.

There are a lot of things rattling around in my mind to write about, but I'm pooped tonight and just want to chill in front of the tv.

I will say one thing that was sort of whacky. I got a call this morning from a 215-503-xxxx number which is the hospital. It was a woman who introduced herself as Mrs Gomez, who said, "Uh - Mrs. Young? Your husband's not responding to me."

Yeah. I had a freaking heart attack.

Then she continues, "I'm from dietary and I can't get him to wake up to fill out his menu."

What the f? I mean, I appreciate the gesture and interest in Mike receiving food he will enjoy... but for gosh sakes.

Then, she actually told me, "He's been here a long time. I used to see him and he looked really good. But he doesn't look great right now."

I found myself explaining to this lady that he had just returned from radiation treatment and was probably exhausted.

Weird weird weird.


Monday, May 29, 2006

[Photo: Signed copies of Curtis Sittenfeld's new novel - get one with all proceeds going to the American Brain Tumor Association in Mike's name - see below]

Mike was looking good today. I had a very brief visit this afternoon and ran into Kevin upon my arrival and Sasha and Dee upon my departure. Mike was content, not happy - not sad. But appreciating stories and laughter and eating quite well.

One very important and slightly graphic piece of evidence indicating that Mike is doing well: Today Cammie (one of the techs) said that Mike told her he needed to go to the bathroom. She was stunned. He told her this once in the morning and once in the afternoon. Both times he didn't make it to the bathroom in time, but he did in fact have to. I'm sorry if any of you folks are uncomfortable with this kind of detail, but for me it's about what's going on in Mike's brain. And it's wonderful because it tells me that through the muck his brain is finding a way to communicate with his body.

Please sign up for dinner dates or afternoon visits with Mike this week. This Wednesday, Friday, and Saturday are still wide open! If the calendar doesn't work for you, shoot me an email and I'll write it in. And whatever time you can get to the hospital is fine. I just was telling people 5:30 sort of randomly based on when his food was arriving in the past. But since he's eating pretty well on his own with just a little help from the nurses, it doesn't matter if you're there for the actual consumption of food or not. If you arrive after 7 pm, chances are he'll be sleeping, but any other time is fine.

I had a crazy brainstorm and I think many of you might find it exciting...

My dear friend and officemate, Matt, has this fantastic girlfriend who also happens to be a successful and critically acclaimed author. Her name is
Curtis Sittenfeld and she wrote the novel Prep that was a NY Times best-seller last year. Her new novel, Man of My Dreams just came out a couple of weeks ago. As I was on Amazon to buy my copy, I thought maybe I could buy a bunch of them and ask Curtis to sign them and then I could sell them to interested people at a mark-up and give the proceeds to the American Brain Tumor Association. Curtis not only agreed to help out, but gave me 10 hard cover books and 10 books on tape that she had been given by the publisher. Each one is brand new and signed by Curtis.

So the question - are these books good? Well, the
Washington Post's review of Prep was entitled, "Move over, Holden" (as in Caulfield)

Reviews of Curtis' new novel,
Man of My Dreams from:

Time Magazine
New York Times
It's also reviewed in this week's People magazine, but I couldn't find a link to it.

So... the price? The regular hard cover - that
doesn't have Curtis' signature in it - retails for 22.95, though you can get it on Amazon for about $15.00. So you tell me if you're interested and what you would pay for a signed copy. I'll try to figure out based on your input what a good price to ask would be.

Added Tues 5/30 at noon: Wow! Response to the book deal is amazing! I have a bunch of people interested and willing to pay $50-75 for a signed copy of Curtis' book. For those of you more frugal friends such as myself - maybe consider going in on the book with someone else. If you're willing to pay $25, email me and I'll hook you up with someone else who's willing to pay 20-$30. Then you two fight over who keeps it. All proceeds will go to the ABTA.

Either post your interest and price in the comments section, or if you're embarrased about being cheap (which I would be cause I'm a cheapo), then just Email me at 185cranios@gmail.com


And finally, I end this post with a disgusting - though humorous - picture for you.
Bax and mama out in the backyard. Mama gardening, Bax playing. Mama hears an excited, "ma-MA! ma-MA!" and turns to see Bax with some non-descript item in his hand and a smile on his face. Mama gets closer. The item? A partially solidified and very dead - chipmunk.


Sunday, May 28, 2006

[Photo: Today's hospital visit! (taken with camera phone, but still a good shot)]

Last night, they moved Mike to a new room because the A/C wasn't working in the old one.
But it's another great sunny one just two doors down. Some sweetheart (I think Suzette with the help of the tech anthony, who gave mike a great shave the other night) moved e.v.e.r.y.t.h.i.n.g. Including all the photos and pictures, calendar, and signs and hung them all up beautifully on his wall. it's nice, too, because the new room has the bed facing the opposite direction of last time- a little variety.

So, Mike's new room is 6606b.

This morning, Bax and I visited dada at 10:30 am. As soon as we parked in the garage, Bax looked around and started saying, "Dada? Dada?" with a huge smile. Visitors' lounge was unfortunately already packed. Tech Chris (who hooked us up with Joy from Dietary to get Mike good food and fresh fruits/veg every day) came and helped out with Bax during the visit out in the sunny hallway. Mike was so much more alert than last week. He heard Bax from down the hall and started talking to him as they were rolling Mike down to us, making funny faces and saying, "Baxman!" We sang songs, Bax gave Mike kisses - and flirted with all the other visitors in the hallway.

At one point, Bax was on Mike's lap and out of nowhere, Bax decided to take a dive off the side of the wheelchair - and in a move I haven't seen from Michael in months, and that I wasn't sure I'd ever see from him again... Mike grabbed Bax quickly with both hands and held him back on his lap. It was so good to see. I couldn't believe how quickly he responded. I think it's because it involved his sense of touch and not sight. His vision is so bad that he isn't able to respond to things quickly in front of him, but the feeling of Bax about to lunge off the side of the chair... that Mike understood and reacted to.


There's this NPR show that I used to hate called, "voices in the family" on WHYY with Dan Gotlieb (sp?). Mike always used to mock my irrational hatred of this show. I don't know why I didn't like it. His voice? the idea of people calling in for emotional support to a radio show? I don't know.

Well, this morning they were talking about the role of spirituality in times of trauma and grief. And how in order to process the reality of difficult times, it is almost necessary to believe in something greater than yourself. And I thought and thought about this... for a while in terms of God and religion. Yes, I do pray to whomever is listening. I pray for Michael to get better and I pray for strength.

But the "something greater than myself" that is truly getting me through this isn't belief in some deity. It's belief in the goodness of humanity. The goodness and generosity of the amazing people around us. The strangers who are following our story and write words of support. The people at DiscMakers who are SO good to Michael and confirm the fact that they really are a family to him. The many friends who visit Mike every day. The anonymous mom of a child at Bax's daycare who gave me a gift certificate to Topper's (!). The family members near and far who check in to see how I'm surviving all this. The neighbors who offer up any help they can. The amazing nurses who turn on Mike's music at night, ask him about Baxter, and cry when they see us together on a particularly good day. The woman who works in the little booth in the parking garage who asks how my husband is whenever I pay her on my way out. The women at Haddon Learning Center who take such good care of my boy and have been so kind to us. My babysitter, Annie, who won't except a dime from me (which, Annie - has to stop. Really.).

And then there are people who I meet who are just wonderful who have no knowledge of this situation. The chatty woman at Superfresh. The many people who fall in love with Baxter at first sight and gush over him. The friendly guy at Dunkin Donuts who gave me 5 free munchkins for Baxter just because.

It would be easy to become a bitter person over the course of this saga - but how boring and what a waste of a lighthearted person (which I generally am). Besides - bitterness breeds bitterness. Instead, I actually find that I am so overly polite lately - so chipper and chatty with folks - just to minimize the likelihood that I will get bad vibes sent back my way. And you know what? 9 times out of 10, it works. I feel the love right back. More than ever. And these strangers will never know how important it is. The holding of the door, the "Sweetie" from the cashier, the picking up of something I drop, the random, "I see you have Pirate's booty in your cart. Does your son really like that? I've been wanting to try it."

So, I guess what I'm saying is my "something bigger than myself" is the kindness of others.

Thanks for that.


Saturday, May 27, 2006

[Photo: Mike giving me a thumbs up today!]

Another great day for Mr. Young! Looking great, eating well, feeding himself, up in the chair, seeming quite strong. He was very lovey, too. Kept wanting to hold the palm of my hand against his cheek, eyes closed, smiling as he moved my hand along his face. He's such a peaceful person to be around. It's contagious.

He loved listening to upbeat music - both kiki's mix (which is awesome!) and one he made back in the winter.

The climate control in his room is a mess. It's really humid in there. He doesn't seem to mind, though - and they're on top of it and it will be fixed early next week (a guy came to fix it yesterday, but he needs another part).

While Mike is doing great, he still isn't initiating conversation.
He doesn't really ask any questions, either. Even when I asked if he wanted to ask me anything about home or if he had any questions about how things are going he sort of shrugged, eyes wide open, and said, "no. Not right now."

If anyone meets a nursing tech named Anthony, give him a hug for me. He's really sweet and gave Mike a great shave and a new look with more of a goatee than a beard. He also wrote about it in the visitors' log! That's the other awesome thing I keep forgetting to write. Heather - the visitor's sign in book that you left is now used by everyone - even nurses. They write when he was bathed, how much he ate, and when they brushed his teeth. They even write little tidbits about him. They really love him a lot. How could they not? Now that he's doing so well, nurses who have had him in the past come in just to see him. They all just sort of giggle and shake their heads.

I keep picturing that months from now, Mike and I will visit that unit, Mike with a plate of his molasses cookies in hand, and he'll go around hugging all these ladies who he really doesn't remember, but who took great care of him for so long. And we'll all hug and cry tears of happiness.

BTW, I told Dr. Andrews that Dr. Spetzler out in AZ recommends a 2 stage craniotomy to remove the tumor. Andrews laughed a polite laugh and said, "Well, Dr. Spetzler is what we like to call a "refined cowboy." Love it. I told Andrews I'm very content with the plan we've adopted and I'm willing to see it through. He was pleased to hear it.


Friday, May 26, 2006

Today is a great day! So great that I'm not even going to write much. Instead I'm going to sit down and watch an episode of Big Love on HBO on demand.

In short, today was the best I've seen Mike in 2 months. Strong (able to turn himself onto his side in bed without my help!), eyes opened wide (right eye was only slightly more squinted than the other), chipper, happy, good color in his cheeks, and charming as ever. Short term memory is still an issue, but shows signs of promise. Incontinence still a problem, and vision is still bad. He also doesn't really initiate conversation much. But -he's good at joking with you if you start the joking and talking with you if you start the talking. They think the new steriod is working for him and they changed his dose of DDAVP, so his sodium is in the 140-145 range where Mike always seems to do a little better.

So happy long weekend to all of us! And Yay for Mr. Invincible. Seriously. Imagine. He still has those freaking cysts in there - and somehow his body is finding ways around them to heal.


Thursday, May 25, 2006

Not a lot to report today. Recovering from my stomach flu here at home. Slept from 9:15 am-12:45 pm and from 2:30-4 pm. I started feeling human again this afternoon. Still a little off, but better.

Mike's nurse, Judy (another Judy. Not the n.p.), has had him before several times so she knows Mike pretty well. I talked to her this afternoon and she says Mike is having a great day. She said he is far more alert than he was over the weekend and ate a great breakfast and lunch.

I am planning on going to the hospital tomorrow, assuming that I keep feeling better. Fingers crossed.

Info for visitors. I haven't written about the logistics in a while:

Mike's in 6604b Jefferson Hospital for Neuroscience, 900 Walnut Street.
Entrance is on 9th street between Locust and Walnut.

If you're driving in, you can park in the parking garage that is attached to the hospital. The garage entrance is on 9th street on the left, just above Locust street. I have tacked a few discount parking stickers on the bulletin board in Mike's room. It's lets you park for $8 instead of he normal $15.


Wednesday, May 24, 2006

I'm sick as a dog with a stomach flu. Aches, chills, sweat and all. How do single parents do this? I guess they do just what I did. I put Bax in daycare and slept from 11 am until 4 pm, got him home, had some quality time with Elmo on TV, fed him, read books and got him in bed early.

This morning I got all dressed up and ready to go to to drop of Bax, head to the hospital, and then head down to UDel for a meeting with our summer research assistants. I was really looking forward to the time at UDel - I actually felt grat getting ready this morning and then as the morning went on I felt more and more like ass.

I did get to the hospital around 9:15, saw Mike in the middle of getting an EEG to assess his brain waves to see if he was having seizures. They assumed he wasn't, but wanted to be safe. The tremors on the left side of his body are pretty troublesome and they wanted to definitively rule out seizures as the cause. No evidence of seizures was found. It is probably just the swelling as they originally suspected.

I do think that the decadron is already working for him. He was alert and so smooshy sweet when I was in. I helped him eat some eggs, toast, and a nutritional fruit juice - that's when I realized just how crappy I felt. Never have scrambled eggs looked or smelled so dreadful to me.

I talked to Mike's sister (ahem - "seeeester" as Mike says it) Dr. Diana tonight. She said that the webcast of the pituitary surgery was really good to watch - it really gave a good understanding of how complicated it was. She also said that she talked to Dr. Evans today and he basically told her he's not going to be satisfied until Mike is more like himself. Again, Mike is doing so great with all the crap in his head and with the radiation taking its toll each day. Watching him almost makes you feel like he's sort of healing in the midst of all this. As they've said in the past, Mike is the Phoenix. And I'm feeling like it's inevitable that he'll rise again.


Tuesday, May 23, 2006

[Photo: steroid Mike is now on to reduce brain swelling]

This morning Mike was difficult to rouse from sleep. They ordered another CT scan that revealed significant swelling on the right side. He didn’t eat breakfast. After radiation, he wasn’t hungry for lunch and got into bed. I arrived at 1:45 and got him awake and eating. He ate a little mashed potato, chicken pot pie and some coke and chocolate chip cookies. Not bad. Everytime I dropped something on him or the bed, I chastised myself and Mike chuckled. Definitely in good spirits in spite of the fatigue.

At one point I gently poked his side and said, “hey. Hey. hey… you awake? Hey.” like I do from time to time. He opened his eyes, grabbed by hand and squeezed me back – “Hey hey hey… hey to you!”


Later, I said loudly, “I love you.”

To which he replied, “I love you.”

“No! I don’t think you understand! I LOOOoooooove you," I said.

Mike opened one eye and mockingly provided my inner dialogue, “Stupid stupid man!”


Dr. Andrews called around noon to let me know they will be giving Mike another steroid that is designed to reduce brain swelling (Decadron). Mike currently has significant swelling on the right side around the cyst - likely due to radiation. He only has 9 sessions left of radiation therapy, so Andrews would like to still continue to the end, uninterrupted. The swelling inside on the right is the probable cause of his weakness and tremors on the left side that we have witnessed over the past week or so. The latest scans show that the size of the tumor and cysts are the same - suggesting radiation is working on the S.F.T. - but the scans also do show this enhancement in the entire region, particularly on the right - this is the swelling that Andrews was referring to.

Again, hopefully all of this is temporary. All we can do is wait.

PS: Yes the SFT has certainly shaken my sense of comfort in the benevolence of the cosmos. However, if taylor hicks doesn't win American Idol... then there truly is no justice in the world.


Monday, May 22, 2006

[Photo: The sign I bet Mike's new roommate's wife wishes she could post. Read on.]

Today Mike showed a lot of his personality – in his expressions, gestures and comments. However, he was tired, and slumped to the left with a significant tremor on his left side. Mary Carpenter came by and we tried to aid him in eating his lunch, but he didn’t have much of an appetite.

I cut his hair today –
man does his hair grow fast! I used his electric trimmer and he helped me figure out how to use it. I then finished off with a tiny pair of scissors. I uttered, sort of to myself, “I think I actually like cutting it better with these tiny scissors, even if it’s taking forever.”

“Of course you do,” Mike said.

“What do you mean, of course I do?”
“You’re Danna.”

“So? What does that mean?”

“It means you’re a little OCD,” he replied with a smile.

Nice. Never has insult been so enjoyable.

The N.P.s would like to put the foley catheter back in.
Right now he has a less invasive kind (Texas), but they fall off and don’t work well. Lots of people are wondering why they’re not trying to get Mike off the urinary catheter or encouraging him to figure out how to go by himself. Unfortunately, Mike’s brain and body are not communicating with each other right now about any of those lower functions. It’s likely due to the pressure on the interior frontal lobes, and I believe the surgeons are anticipating that that will come back once the cysts are drained (that’s what I am so hoping. I can think of no other issue that speaks so symbolically to one’s lack of autonomy than this one). For now this means he needs a catheter in. In addition to the logistics involved, the nurses need reliable urine samples every 6 hours for the tests they’re running – you know, the wild goose chase for good sodium and potassium levels.

I actually got him from the chair to the bed by myself. It was quite a project. But it was nice when he was standing up with his arms around me and we hugged for a minute.

If you’re going to visit Mike, which I encourage you to do, he has a new roommate whose wife’s attempts to control an unfortunate and uncontrollable situation almost rival mine. One example is a big sign posted outside the door that says “Visitation Reserved for the following people ONLY: followed by the names of herself and her children.
I actually paused a second and thought, “Am I allowed in?”

Just know that it doesn’t mean you. My hunch is, by the way the sign is written, there are some specific family members that they don’t want to have access to him.


Sunday, May 21, 2006

[Photos: This morning's visit to the hospital with Baxter. Mike enjoyed an apple cider donut.]

Went to the hospital with Bax around 10:30 am. Much better to go in before visiting hours start... gives Bax the run of the place. The nurses and techs had Mike all ready and up in a rolling chair in his own shirt and hospital pants. They wheeled him out into the hallway down by the sunny window. The urinary catheter is back in - must not have been a success last night without it.

He and Bax sat in the sunshine at the end of the hall and Bax was very happy to see dada. Bax did some animal sounds for Mike, and they sang the alphabet together. Mike was content, but very tired, though not as slumped to the left as yesterday. I think his sodium is up a little bit, so he's a little more upright. I brought Mike some of his favorite apple cider donuts from the farmer's market in Collingswood.

When Bax did his rendition of "ashes ashes, we all fall DOWN!" Mike said... "Interesting. I can appreciate his artistic interpretation..." Yup. Very mike.

Bax was a hit with the nurses - no surprise there. The visit was a little longer than the last. We were all together about 40 minutes.

At one point, Bax kept putting his hands into this trashcan, so I decided I had to follow through with a timeout, holding him still on my lap on a chair in the visitor's lounge. As I'm doing that, I hear something from the hallway. I run out and mike is up out of his chair! Says he needs to use the bathroom - but he's got a catheter in. Freaking A. Tend to Baby? or Dada? I take a second, run to Mike, get him back in the chair, but he's way low in the darned thing, slumped down. I slide him back and straighten him out. Bax is a little upset because I ran out so quickly. Mike doesn't get what all the fuss is about. I call the nurses on the hallway phone. "You need help?" Cammie asks. "Um... yeah. I need help." Mike laughed a little. He could tell it was sort of a chaotic moment. That spelled the end of the visit. The nurses were with us in less than 5 seconds and soon thereafter we packed up to leave.

Phew. Nice visit though. Nice seeing Mike in the sunshine and always nice seeing Bax with Mike. Hopefully tomorrow, Monday, we'll get more dirt on the status of the cysts and a potential drain on them. Not sure if it will be in the cards, though. Especially since he seemed less slumped today.


Saturday, May 20, 2006

[Photo: Pituitary tumor guru and craniopharyngioma expert, Dr. Laws at UVA. Received his opinion today in the mail. He supports our current course of action. Read below.]

Good morning at home, not a great day for Mike. I went to the farmer's market with Baxter, Heide and Hazel in the morning, and fed Bax lunch at home. He was a joy as usual. Total goofball, actually, just the way I like it. Annie, Bax's favorite red-headed sitter, came over to hang with Bax for a few hours so I could go to the hospital.

When I got there, Mike was in a chair quite slumped over to his left. More so than usual. I've been noticing this slump progress over the last couple of weeks. He looks weaker on the left side than the right. This makes sense since the cyst is on the side is pressing into the right side of the brain and that's how all that stuff is wired. He had some tremors in his left arm, too. He was in good spirits, though. Made a few jokes and reponded quite pleasantly in coversation wth me and Kelly and Diane who came in to visit.

Mike's nurse Suzette was great today. I had a bit of a breakdown and she and Cindy (from cardiology) let me cry on their shoulders and even cried a bit themselves. I wasn't comfortable with the change in Mike's condition. It even looked as though his face was slightly droopy on the left side. Suzette said she noticed it and pointed it out to the doctors this morning, but they didn't seem concerned. Since I, too, was worried, Suzette paged the resident.

Surprisingly, the resident was in the room in like 15 minutes (quick for a weekend - compared to Gibbon, anyway), and did a brief strength test on Mike - had him hold his arms straight out in front of him. His left arm was about 6 inches below the right and falling. The doc ordered a CT scan and Mike was wheeled down to CT within minutes. The CT results came back within the hour and the doc said no significant changes could be found between today and a few days ago. He did call doctor Evans, though, and said that Andrews was going to be in the building tomorrow morning and would check Mike out. The resident said it is possible that they may need to do the cyst drain early if these things are really causing Mike problems.

In the meantime, Mike's urinary catheter fell out - maybe that's the universe's way of getting Mike to use the bathroom on his own. Suzette said we'll use it as an opportunity to see how Mike does without it. If it's a problem, we can use an external (Texas?) catheter that is far less invasive.

Sodium status today: TOO LOW. G*ddamn sodium. 125. They withheld DDAVP today so we'll see where tomorrow brings us.

Finally, I heard back from Dr. Laws at UVA. Very thoughtful, concise and kind letter. It reads as follows (I have emphasized the most important observations with bold font. They weren't bold in the original.)

Dear Mrs. Young:

I was certainly sorry to learn about the difficulties that Michael Young had encountered with his treatment for craniopharyngioma. I have gone over the records and MRI studies, the most pertinent of which is the most recent one dated may 10, 2006. As you know there continues to be a very large residual solid and cystic craniopharyngioma that extends up into the third ventricle. It does appear that there may have been some damage to the midbrain in the course of his treatment and it cerainly seemed appropriate that he had the shunt placed.

All things considered, I would fully support the current plan of stabilizing the situation and then attempting to drain the cystic portion of the tumor which is in fact responsible, I believe, for many of the current problems. I don't think any other kind of surgey would be appropriate at the moment, especially considering that it was difficult to reach and to remove the tumor even using a craniotomy. I will be happy to review things as they progress and hope that ou will see some significant improvement. Please keep us posted.

With all best wishes,

Edward Laws

So, he, too, believes the bulk of Mike's current problem is the cysts - not necessarily the solid component. I feel a renewed sense of confidence in our plan.

Won't it be something to get Michael back? If he thought I was overbearing before... you just wait.


Friday, May 19, 2006

If you're really nerdy - watch a live webcast, May 23rd at 4:30 pm of a pituitary surgery somewhat similar to the surgery Mike had in November by the same surgeons, Evans and Rosen, narrated by Dr. Andrews: http://www.jeffersonhospital.org/webcast/pituitary/index.html

Today Mike looked really good.
Sleepy, though. I didn’t get as much alert time as I did with him over the last couple of days. We had a nice visit. Cara came and Susan stopped by. Mike’s eyes were closed for most of the visit, but his color was good and he smiled at appropriate times, indicating that he was eavesdropping as usual.

He was probably sleepy because they hadn’t fed him all day
. He was NPO because he was getting a PICC line put in today. Freaking PICC line. Turns out that because he had his PICC put in by PICC nurses and not some fancy specialist (I forget who) he could have been eating the whole time. AGH!

The PICC ladies asked why he still needed a PICC (this is his 4th!) and I explained that he needed blood draws every 6 hours for labs and that his veins were IMPOSSIBLE to find. As I’ve explained to others, I’ve seen 5-6 nurses try for 1.5 hours with an ultrasound machine to locate veins and NOTHING.
Well, the PICC ladies said that PICCs really aren’t supposed to be used for lab draws – that drawing blood through PICCs increases the risk of infection. They said it is done sometimes out of necessity, but is not ideal.

They also said I should keep my eye on it and make sure he nurses follow PICC protocol with proper sterilization and flushing of the line etc. How the heck can I keep my eye on it? Sheesh. I’m not there all the time. So, I talked to the nurse the nursing supervisor about it and they put a sign over Mike’s bed and an order in his chart about using proper PICC protocol to reduce infection risk since he’s had the line so long.

Also, I have met this fantastic firecracker
of a woman through the craniopharyngioma listserv whose grandson has one of these S.F.T.s. She has lots of insight and experience with hospital bologna and encouraged me to talk with the nurses about getting Mike’s urinary catheter out. Today I talked with tons of people about it. The nurse, the nursing supervisor, the N.P., and Evans’ nurse, Kelly. It is fair to say that the nurses might want the catheter to stay in because it reduces the amount of work they have to do. But, if Mike is aware of his need to go #1 (which we’re not sure of yet since the catheter’s been in so long), then he’s going to have to learn how to manage this with his visual deficits. Plus, having to use the bathroom is a good excuse to get him out of the bed more often. So, while it will be logistically difficult, getting the damn thing out is my latest little project. Thanks, Jalena.

The verdicts from second opinion doctors are coming in.
Sen (NYC) says current course of action is appropriate. Spetzler (AZ) recommends a 2-stage surgical procedure, first in from the side and second in from the top. I’m eager to hear was Laws has to say. I’ve heard nothing but good things about him.

I hope you all have a wonderful weekend. We are so lucky to have so many amazing friends in our lives who are helping us through this situation. I talk about it all the time, but I can’t emphasize it enough. We couldn’t do this without all of you.

Friday, May 19, 2006 - morning

Hi all - please check your calendars and consider hanging with Mr. Young for dinnah' one night next week. I'm also looking for folks to visit on the weekend - anytime between 11 am and 8 pm. (no radiation treatment on weekends)

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Each week, I print the visiting schedule out on Sunday night and hang it on Mike's bulletin board so the nurses can see how much love he has. I wasn't sure if the nurses and docs really looked at it, but this past Tuesday when I came in, the nurse said, "Oh, by the way, this visitor's calendar is the one from last week. Do you have the new one to put up?" Which I did.

Anyhow - I guess they do look at the darned thing. Nice.


Thursday, May 18, 2006

[Photo c/o Johnny Vegas' camera phone: Mike peacefully sleeping today with stuffed bunny and aloha pillow - both from my 'rents]

Today is a great day for Mike. The closest to himself I have seen since his weekend home on April 1-3.

I got to the hospital around 1 pm. He had had his radiation therapy as well as an MRI in the morning. Unfortunately, the PICC line never went in yesterday. Mike got bumped down the list - so he ate nothing all day yesterday (and no breakfast this morning) for nothing! Yeah, totally annoying, but not out of the ordinary. This kind of stuff doesn't piss me off as much as it would have a month or two ago.

At least they got him lunch today - thank gosh - one of his special Mike lunches with fresh fruit and garden salad. He did great, feeding himself with just a few moments of confusion over the location of items on his tray.

When I realized how well he was doing, I took the opportunity to talk to him in detail about a bunch of things: How I went to DiscMakers today for the Art Directors to copy Mike's files off his laptop onto their computers, How Kirk and Angie would be his dining compatriots tonight, and other news about DiscMakers. I left to get him a soda and came back and asked him about the things we had talked about. He knew all the answers. I asked him 15 minutes later. He still knew. I couldn't believe it. Then I asked again - like 1 hour later. Fuzzy - couldn't remember that it was Kirk who'd be there for dinner - but recalled some of the gists of the other things I had told him.

I was shocked. So shocked that I grabbed his nurse, Monique to tell her the news and the N.P. Jaimie to tell her. Literally grabbed them by the shoulders and told them the news. “Really?!?” was the response from both.

It was as though he was really present - saying things that were context appropriate, able to continue on the current topic even with a long lull in the conversation. Even had a great phone conversation with his brother. And, as Peter pointed out in one of yesterday's comments - all this with those freaking cysts still in his head.

The man is unstoppable!

On my end, I found some more magazines to cancel. Can you believe how many magazines we get? And this is after the post-Baxter magazine cutback (once we realized we had no time anymore to do anything, forget reading the Economist).

Until yesterday, our magazine subscriptions included:


Yoga Journal

Fine Gardening

Cook's Illustrated

Cooking Light

ESPN mag
Sporting News

Entertainment Weekly

Consumer Reports

As of right now, we're down to:

Yoga Journal (trying to cancel - but they don't make it charma- friendly to do so)
ESPN mag (turns out it was free anyhow… so might as well keep getting them)

Entertainment Weekly (Can't live without it. Besides, isn't it tax deductible given my profession?)

Consumer Reports

So, you're thinking, what the hell did they subscribe to before Baxter was born? Well… those nine magazines listed in that first list plus:

The Economist

Real Simple

Sports Illustrated

The Nation

The Onion


What the heck were we thinking? I'm not sure.


Wednesday, May 17, 2006

[Yay! Lame photos taken today by two lame smooshers with my camera-phone. Mike was g.r.e.a.t. today. If we keep heading in this direction - we'll get there.]

Today is a great day for Mike. Apparently he was sleepy this morning, but early this afternoon, he was fantastic - the best I've seen him in weeks. Scott Greer visited at noontime, and was soon joined by Scott McCormick and Kirk Love. They started joking around and Mike joined right in. He did a lot of Mike-isms and made a lot of great facial expressions and hand gestures that were very Mike. At one point, we had the TV on and Mike demonstrated for everyone the "TV face" - the "duh" face he gets as soon as the TV is on.

The guys started talking about baseball and Barry Bonds and I asked Mike if he liked Barry Bonds. He said yes. Scott said sarcastically, "Oh, did you guys used to date?" and Mike laughed and in his totally typical Mike way shrugged a little and said,

"We weren't as much dating as... experimenting. It was college."

Then the guys joked about the various aspects of Barry Bonds that Mike must have found sexy... to which Mike added, "And then there was the earring."
It was great.

There were too many little Mike-isms to even list!

The Physical therapist came in around 3 pm as I was about to leave. Mike got up and walked a bit and looked great on his feet.
The PT, Mary, asked what I thought about Mike coming home if he continued to improve and get stronger each day. I couldn't tell if she meant come home before radiation is over, or come home after radiation. She said that if they're doing PT every day while in the hospital, maybe he won't need rehab.

Now, before
freaking out at this person and saying, "Are you kidding? He has no short term memory, hasn't had his sodium stabilized for more than 5 days and is incontintent... and you want him to come home?" I took a deep breath.

Just to be clear here - It's not that I don't want him home, I would l.o.v.e. Michael to be in our house, or on the deck, in his own clothes, sleeping in his own bed. But it's not even a possibility right now without a nurse.

But before laying into the PT, I held back. I know enough about this whole hospital thing by now to know that statements like this one sort of come out of left field sometimes, without discussion with the neurosurgeons, without consultation with the brain rehab people, without a look back at the stability of his numbers over the past weeks. She's seeing him improve physically day-to-day, and she's thinking, "this poor guy. He's doing great! He would be happier at home." I told her that Andrews isn't even interested in Mike going to Jefferson's rehab floor over the Thomspon building right now - let alone home. He wants him right where he is, to keep him under observation and to get radiation each day.

I also explained that the idea of enrolling Mike in the Magee rehab program wasn't as much about his physical needs as his cognitive and visual needs.
No matter where Mike ends up after the drains on the cysts in a few weeks, he will need to relearn how to do a lot - in the face of short term memory deficits, fatigue, and severe vision impairment. In my mind, rehab was never about getting Mike able to move around again, but to get him to be as autonomous as possible in light of his neurological deficits and to have a period of time to assess his daily needs by professionals. She gave a big nod and said, "I'm glad I asked. I just wanted to sort of figure out where you were at." I'm glad I didn't waste my energy flipping out .

Finally, I had a wonderful dream last night.
That Mike had gotten better. Not 100% perfect better, but way way better. No memory issues, body functioning well, sort of tired, but funny and able to take care of himself. In the dream, we were all just crying and hugging him and each other. It felt so good. It was the first time I've had this dream. Maybe we're turning a corner here.

Mom and Dad left this morning. I'm now officially flying solo.
I spent the morning doing the budget, figuring out how to cut back, cancelling magazine subscriptions, writing overdue thank you notes, making some changes to make Baxter and my life simpler. I think I can do this. I'm shocked that I feel this way, but I do.

I really think I can do this.


Tuesday, May 16, 2006

[Photo: Christmas 2002, Mike and lil' Miss Kylee!]

Today was a sleepy day for Mr. Mike. Once he was awake, he was content and answered appropriately (except for thinking he was at a campground), but man was he tired.

Thanks to one of our favorite techs, Chris, Mike has been hooked up with the person in charge of nutrition at the hospital, which means he's now getting fresh fruit for every breakfast and a salad with every lunch. Since he's going to be there so long, I am so thankful that he's not just going to be dining on shepherd's pie and meatloat every day.

Today I got all the paperwork overnighted to our "second opinion" doctors. After our family meeting with Andrews and Evans, they were very helpful in working with one of the nursing clerks, Judy, to assemble all of our files. Judy was even able to get all Mike's reports from the endocrinologist, opthamologist, and other internal medicine docs. Today, before putting the various packets together with my cover letters, I decide to go through these 80+ page stacks of reports. Unfortunately, somewhere along the way many of the reports got out of order and uncollated. It appears that the surgical reports (the most important docs in this pile to understand what rendered the craniotomy particularly complicated and unfruitful) were originally double sided, and whoever copied them just did page 1 followed by page 3. Then later, they discovered all the page "2s" of Mike's 10 surgeries. Piecing these pack together was a task - fortunately, my mom sat down with me and we got it done in about a half hour.

Uncle Jonathan and Anna left for home (NY state) today. It was great having them here. They also have a style that made for a healthy interaction with Michael, which was nice to see. Mom and dad are planning on leaving tomorrow morning for NH. I think it will be good for me to try to be on my own here - to see that I can do it. I can take care of Bax, get him to daycare, keep the house in order, be Mike's advocate, and carve out a couple of hours each day to work on my research. I actually think this is possible. Especially while Mike is in this holding pattern for at least the next 3 weeks.

Unfortunately, this trying situation proved complicated for my interaction with my parents. It is fair to say that living with your parents while you're 30 years old and husband is sick with a brain tumor is just... difficult. Families have complicated dynamics. Combine that with my releasing the bulk of my frustration on them, their own pain and sadness witnessing their youngest daughter in this awful situation, and the Goldthwaite desire to move towards a solution at a time when no easy resolution exists... made for some tense times. Not all of the times were tense, but a few of them. That being said, I'm proud to say that we had one of the most productive conversations ever this afternoon. So I know we'll be fine. This situation could certainly bring out the worst in a family (which it might have over the past couple of weeks) but it could also bring out the best. The nature of the dialogue today and the promise for better interaction in the future tells me that we will end up in the latter of those camps in days to come.


Monday, May 15, 2006

Today turned out wonderful. Difficult and emotional, but wonderful. Liz came down from NYC in the morning and saved us all by coming up with a plan that would actually get us all to graduation and get Baxter home in the afternoon. Thank you to Liz and Tresa for helping with the transport issues today - and to Tresa for hanging out with Baxter this evening and feeding him dinner.

It was wonderful being at Annenberg today - seeing the peers and faculty members that I haven't seen in a few months. Joe introduced me with some meaningful and kind words. After the ceremony, they had a cocktail reception. Liz and Tresa took Bax back home while Jonathan, Anna and I went to the hospital to visit with Mike and show him my poofy hat (pictures soon to come...). We got Mike up in a chair and he ate a good dinner. We talked with him about the last episode of West Wing. (Mike said that the West Wing was a "tightly written" show). Anna and Jonathan asked him if he missed work and what he missed most. He said he missed "coming up with a big idea." We had some great conversations with him, but he did get exhausted very quickly. Thank you to everyone for making today special in spite of these circumstances.

Here are the remarks that I made today at graduation:

I would like to start by saying thank you. Thank you first to Walter and Leonore Annenberg whose great gift has enriched many of our lives. Thank you also to my husband, Michael. As most of you know, Michael has been battling complications from a brain tumor and is not here today. He the person to whom I owe the greatest thanks - for his love, patience and for his ability to keep my feet on the ground and always make me laugh.

Thank you to my family for supporting every path I have chosen - and for letting me watch too much tv as a kid, the key to any successful communications graduate career. Thank you to my peers and colleagues here whose warmth in dealing with Michael’s illness has been an important source of strength. And thank you to our dear friends – who are so dear, in fact, that we refer to them by the more accurate term “the family.”

There is one person who has had the most direct impact on my academic life and who has shaped my approach to and passion for the field – and that is Joe Cappella. Joe is my role model, mentor, and friend.

Throughout my time at Annenberg I’ve been plagued – as many of us have – by a sort of impostor syndrome – that if I’m not careful, they’ll find out: That I don’t really know what I’m talking about. That I’m just a kid playing around with some goofy ideas. Joe has spent much of seven years trying to set me straight. When my first journal article submission was rejected and I was ready to go wait tables again, he explained “This is the business that we are in as academics,” he said. “For our ideas to become science they must go through this process. Sometimes it may seem less than fair and sometimes it may leave us feeling low, but it comes with what we do.” He described it as a critical moment in my career. I could either let it get me down or I could try again. So, I tried again, and it is now in print. Joe gave me a similar pep talk after I took my comps. In the week between taking the comps and learning I had passed , I convinced that I must have failed. Joe sent me an encouraging email that still hangs above my desk. He wrote that even he has doubts about his own abilities from time to time and assured me that if I didn’t question myself at all, I probably wasn’t being challenged.

But what makes Joe stand apart as an inspiring mentor is his ability to support me in pursuit of what is best for me – not necessarily what is ideal for a strictly academic career – but what is ideal for me as a person. When I shared with Joe the news that my husband and I were expecting a baby, he was thrilled. He never once expressed concern that a baby might impede my progress towards the degree. Because of his confidence in my ability to finish, I see the completion of my dissertation as not only attainable, but simply inevitable.

The most important interaction I have ever had with Joe came when he visited Michael and me in the hospital recently. When he came into Mike’s room, I asked Mike if he knew who was there. And after years of using my affectionate nickname for Joe behind his back undiscovered, Mike let it out of the bag: “Yeah, I know who’s here. It’s Jo jo!”

After our visit, I told Joe the truth - that my life is turning upside down, that I don’t know what Mike’s future looks like and I certainly can’t venture to guess what my career will look like. When I shared this told me what I needed to hear from the person who mattered most. He told me that even if I never published another article or never presented at another conference – it would be ok… that what I am doing right now, taking care of Michael, serving as his advocate, and keeping Baxter cared for, may well be the most important thing I ever do in my life.

I know I will publish more articles and present more papers. But Joe’s words helped me focus my energies on the more important job I have before me right now.

Finally, I have a few observations about how the theories of our field have become an important part of my non-academic life.

Over the past few weeks I have realized that except for those few hours in which Michael is in the operating room, the quality of his life is more influenced by concepts central to our field, than by neurosurgery. I have come to see my role as his advocate as a communication campaign designed not necessarily to persuade, but to mobilize people and to increase the salience of various aspects of his care among his nurses and doctors to maximize his quality of life. I capitalize on the privileged role of vivid exemplars in memory by telling nurses stories about Mike to bring him alive and make him seem real. And, of course, there is the role of humor. More than ever, I am confident in the underlying premise of my dissertation – that humor suspends cognitive elaboration, and the generation of counterarguments. This has proved useful in interactions with nurses and doctors and in maintaining my own sanity day to day.

And then there is the sociology involved - the strength of weak ties. The use of a blog to create a community around Michael. Our large heterogeneous social network has provided me with lawyers, specialists, lawn-mowers, plumbers, additional medical opinions and countless dinner dates for my husband.

Communication theory has allowed me to be a thoughtful advocate – to not be a victim of my own cognitive predispositions and to better understand the decision processing of others. I remind myself that prospect theory posits that I will tend to opt for certainty in the face of messages framed in terms of gain and will be willing to gamble when framed in terms of loss. I remind myself of the human tendency to overweight negative information – so I try to counter that tendency with deliberate attention to the positive.

And finally – there is the fact that the body of concepts and theories with which I work most often – network models of memory, construct activation, and priming – rely on a form of cognitive functioning that my husband currently does not possess. He lives in a world in which information obtained from the outside is never stored – is never sent “back” and filed in long term memory. So construct activation of any kind does not occur – rendering priming and framing inoperative for him. I witness the difficulty posed by having to function without a link between what is and what was. This experience has renewed my fascination with these two theories that had begun to seem like nothing more than common sense.

Ultimately, our field is about people, psychology, sociology, messages, and processes. It’s about using what we know about people and institutions and how they work to create something better, in health communication, politics, journalism, or in our own interaction with others. Communication theory extends far beyond the contexts in which we examine it. In that regard, what we do here might not be brain surgery – but I dare say it is even more important.


Sunday, May 14, 2006

[Photo: (L) Mother's Day card with message from Mike - obtained with the help of Susan Murphy, though the writing is from Michael himself. It reads: "Happy Mothers Day, Mike PS: I love you." I cried a very good cry upon reading this card this afternoon. (R) Baxter Newland wearing his beloved "Taggie" (Thanks, Anne and Michael!) as a hat.]

Happy Mother's Day, everyone - and thank you for all the nice mothers day notes.

Today Bax had a nice, but brief visit with Mike. Jonathan, Anna, Tresa and I drove to the hospital with Bax and we met up with Tom and Mary there. Nurse Suzette got Mike all washed up, put on a normal polo shirt and hospital pants and wheeled him out to the hallway. Mike is affectively rather flat, but you can see a delayed response of happiness when it comes to Baxter. Bax doesn't act weird around Dada at all. He sees him and says, "up!" meaning he wants to be on his lap. Bax then sits on Mike's lap and Mike just kisses his head over and over and closes his eyes and rubs his cheek on Baxter's red hair. It's really beautiful.

Bax was a little nut, running all around, loving the attention of friends and strangers. I crouched down in front of Mike and said, "Your son is being crazy." And Mike pointed to me and said, "No. Your son is being crazy." We then kept saying it back and forth, escalating to, "Your son is mad crazy whack, yo." Mike got tired very quickly and we got him settled into his room again and grabbed some brunch.

This evening we had a lowkey gathering at the house with all the family members in town - it was really nice. I am looking forward to tomorrow's graduation ceremony, but Mike will not be there. It is just too much for me, for him, for everyone. He would need an ambulance and a nurse the whole time, and between his catheter and other needs --- I just couldn't get my head around it.

Besides - tomorrow is a graduation ceremony, but the envelope I'll be receiving is empty - no diploma. It's not my official graduation - which doesn't occur until I defend the dissertation. In my estimation, my dissertation requires about 2 solid weeks (meaning about 100 hours or 2 months in current Danna time) to be completed. When it's done and defended, I'm throwing a huge party and Mike will certainly be there.


Saturday, May 13, 2006

[Photo: Baxter as a bumble-bee, Halloween 2005]

Today was a good day for Mike. He was up in his chair from 9:30 am until 2 pm. Ate a great breakfast and good lunch - mostly with no help. He was very tired when 2 pm rolled around, so got into bed and slept soundly for hours. I gave him a shave, washed him up, and had some nice words with him, but mostly he was sleeping.

Morris from Discmakers came by. I think Mike really likes seeing folks from work and I think it makes him feel especially good when Morris comes and talks shop with him. Like Morris said, it seems that Mike likes being stimulated and being engaged in conversation. Particularly once he's really awake and alert, up in a chair.

On the homefront, Tresa is in town and my uncle Jonathan and his girlfriend Anna are in from upstate NY. Mom and dad (ahem - mimi and poppy) are on hiatus from baxter-care with a few nights in the Cherry Hill Holiday Inn while these other folks all stay at my house. My sister, her husband, and 4 year old Kylee arrive Sunday afternoon to attend Monday's graduation.

I'm excited to bring Bax to the hospital to see Mike tomorrow. It was so wonderful last weekend - for all of us.

My mom talked to me this morning about selling Harvey (Mike's 1996 Saturn) and saving money on his insurance. I'm definitely not there yet. As I told Kiki, Kathy and Julie the other day, when I pull around the corner, onto Melrose Ave and see Harvey out in the street in front of our house, for a split second a piece of me thinks, "Yay! Mike's home from work!" And as much as it sucks to realize I'm mistaken, there is something comforting and hopeful about having Mike's car parked outside the house. So, I may be a fool, but for now Harvey's staying put.

Finally, I've told several people about this dream I had last week, and I keep forgetting to write about it. I was reminded of it again tonight when Tresa asked me what keeps me going. My answer? 1) Baxter, 2) the fact that Mike is still Mike-ish, and 3) the fact that I share this situation with so many loved ones. That #3 is where the dream comes in. I dreamt last week that Dr. Andrews told me there was one possible way to surgically remove Michael's tumor. But they could only complete it if they took out individual small pieces and implanted them into other people. So, in the dream, all of our friends volunteered. Everyone took a little piece of the tumor and Mike got better. I'm not kidding - that was the dream.

Hmmm.... I
wonder what that means. And yes, Mary - I know my dreams are transparent. My subconscious isn't very creative, I guess.


Friday, May 12, 2006

Don't forget to book your dinner date with Mike for next week - they're flying off the shelves like hot cakes.

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Very good day for Mike today. Sodium is corrected. He's more alert and funny. I tried to get him to guess what holiday is Sunday (Mother's day) and I told him it's a holiday to honor people like me. His response?

"Brown-noser appreciation day?"


"Overachiever day?"


Finally I told him it was Mother's day. "Ahhh... right."

It's hard getting Mike's sarcasm because his intonationa nd facial expressions aren't as pronounced as they used to be. Besides that, sometimes I'm actually not sure that he's joking. Even in this conversation - i think there was a part of him that might have been serious? After all these years, I still can't totally tell when freaking Mike Young is joking.

Later, the PT and OT people came in to do some therapy with him. One of them said, "Wow! You look great, Mike!" and he did a little head movement and eyebrow arch and and said all sleazily, "Why... thank you..." It was great.

He had a good lunch - salad with chicken and some juice and soda. They've taken him off of IV fluids in the hopes that he can start regulating his own electrolytes. We shall see.

In a potentially annoying moment today, a nurse came in and told me they were moving Mike up a floor to a less-monitored unit. Same nursing staff and same N.P.s and all, but still - moving is stressful. So, I hustled all around and took down the thousands of things hanging on Mike's walls and packed up all his schtuff and then..... "Stop! He's not moving anymore!" said the nurse. GEEEE-zus. Not the most organized place. So, I unpacked everything, put all the stuff back up on the walls and at least now his room's all tidy. so yes, he's in the same place - 6604b at Jefferson hospital for neuroscience at 900 walnut street.

I picked him up a new polo shirt at Target and he put it on this morning and looks great. Those hospital gowns are a drag. I think it just makes Mike feel more human to have normal street clothes on.


Thursday, May 11, 2006

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

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

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

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

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

On a different note, Susan Murphy got the Comcast guys to call me right away. In the meantime I had a brainstorm while in the shower (as I am wont to do) and figured out one thing I had yet to try to get the high-speed internet working. So I tried this one random thing and Ta-Da! Internet! It was still a bit slow but I got it working. But then, thanks to Susan, the Comcast folks got right out here and did work on the outside pole and gosh darnit – I think my service is quicker than before. Susan is also fantastic because she brought the nurses a ton of yummy cookies from south Philly today and got Viv Pickle gift certificates for Judy (our fabulous n.p.) and Kelly and Lauren who work directly with Andrews and Evans.

Oh yeah - Bax has an ear infection. Now is on antibiotics – but he’s still a happy guy, eating well, and lots of giggles.
Love him.

Our new thing: I point at myself and say a really exaggerated, “I!” then “LOVE” and then point to him and say “YOU!” And he does it back with the hand gestures and everything and then I say, “No! I love YOU!” And then he does it back… you get it? Or should I go on some more? Ok. So then, I say, “I love YOU!” and he says… oh… you do get it. I’ll stop then.


Wednesday, May 10, 2006

Freaking comcast didn't fix my online service today so this will be relatively short. I'm hoping to blog in more detail from my lil' cafe tomorrow daytime. Stay tuned. For now I'm bugging Michelle's whole family again ... using their computer. Thanks, Michelle.


Bax - doing much better. Fever's down. Probably a short-lived virus. Played all afternoon with Taylor, Michelle's daughter who turns 13 tomorrow. Bax told her "I luh you," but don't tell Michelle - she'll be so jealous.

Mike - not a good day. Sodium way low (127) . We still are wrestling with balancing his electrolytes. He was vomiting and fatigued. So fatigued he didn't know he was vomiting.

Family meeting - very very good. We had both Andrews and Evans along with my dad and 10 of our amazing friends around a conference table for a full hour discussion. We talked big picture stuff - where we've been and where we're headed. They were great listeners, showed empathy, and reported a willingness to consult with these other neurosurgeons we're contacting. They welcomed that, in fact. And Josh sure did a great job, cause 2 of the people he found were people who both Evans and Andrews thought would be outstanding: Laws at UVA and Sen up in NYC. Evans reinterated the fact that we should never feel "stuck" at Jefferson and I shouldn't worry about the logistics of getting Mike somewhere else. If it came to that and if some other surgeon felt that they could make Mike better, folks at Jefferson would take care of moving Mike.

Upshot: Our current course of action: Complete dose of radiation therapy (which is called fractionated stereotactic radiotherapy - much better than gamma knife) over next 4 weeks. Assuming Mike stays the same or improves, we'll wait to drain the cysts (on top and on side)until after radiation is completed. If Mike shows a decline in functioning as a result of growth of these cysts - particularly the one on the side which has grown significantly over the past 10 days (as shown on today's MRI)- then we'll consider interrupting radiation to do a procedure to drain the cysts. At that point we will probably look at a rehab program like Magee. We won't be in a position to really assess Mike's level of functioning until probably Nov-Dec. Any decision to do an aggressive or radical surgery before then might be premature.

Evans reviewed why surgery was problematic due to scar tissue. He also reminded me of something that is very true. Before the craniotomy, Mike and I told Evans that if things were really tricky in there or if taking out the tumor meant causing harm, then he should back out. So, after 5 hours of a good ol' college try, he backed out because he "didn't want to do him in." Evans also said that any other surgeons who look at Mike's case should chat with him about what he encountered in there, because it is true that the scans and the reality are a bit different due to the scarring.

Peter rightly made the following observations. I'm lazy, so am pasting Peter's words here:

1. You have an excellent pair of doctors attending to Mike. Andrews in particular identified the main point in Mike's further care: a doctor must have the wisdom to know how far is too far to go to try to get the solid mass out. The attempted cure should not make him worse than the disease will. At the same time, they have a plan. The radiation plan. It's worked before on other patients. Maybe it'll work again. If it doesn't, then a high-risk surgery might be worth it. But making that decision is a ways off (at least for them).

2. At the same time, there is little to lose in getting other consults.

3. You are very wise in your expectations for what a good outcome might be. Enough autonomy that Mike can enjoy life.

4. The cardiologist's "poor prognosis" statement some weeks back sounded more dire than warranted, with or without his heavy accent. It sounded like his was predicting Mike's imminent death after a short time. Perhaps you should correct the record for everyone. Andrews and Evans were saying nothing of the kind, even as I tried to read between the lines.

Peter's right. I think Mandel's "prognosis is not good" statement was misleading. Mike's not about to die. That's not the situation we're looking at here. I don't even think Evans and Andrews are suggesting that Mike is going to necessarily get worse. In fact, Andrews said he sees a 50/50 chance of Mike regaining autonomy. That's better than what I had imagined. But remember, autonomy doesn't mean working and driving. Autonomy means living a life outside a facility, hopefully at home, with a routine that allows him to take care of his own basic needs, and gives him the opportunity to enjoy his family and the sunshine in our beautiful backyard.

One thing I forgot to write last night. Yesterday I had Mike's laptop at the hospital and I asked Mike if he'd want to type something to our friends. He couldn't see the screen at ALL. But I put his hands at homebase on the keyboard, and he just ... typed! Here's what he wrote:

"I'm typing on the keyboard like a big kid! Yay! I'm recovering nicely here at home." When I told him he wasn't at home, but rather at the hospital, he said, "Ah. Right." Then proceeded to delete "here at home" and asked where the cursor was and then typed "here at the hospital."

It was fantastic to see. Mike may have a lot of issues, but as Victoria (my sister in law) keeps reminding me, it's important to focus on the things Mike can do. And this little typing exercise brought tears to my eyes.