Monday Rebound

After a steady week of incremental but noticeable progress, Dan took the Sabbath to rest. Less than a week out of ICU, he was marching up and down the hallways so by Sunday he was pretty tired again. The drug recipe (see last post) is a delicate trade-off between baseline pain management, nausea, post-surgical pain management, and sleep. The medication for one makes the other three harder to fix. The anti-nasea medication puts him to sleep, but doesn't remove the pain. The painkillers make him nauseous. The nurses just want to get him to a place where he can be 1) awake, 2) relatively pain free, and 3) confidently munching solid food again. They're getting closer, but Sunday was a hard day.

It was also the day that saucepot Jordan Borghum of DC improv fame and communard/insurrectionist Kate Adamson arrived for a visit. Two incredible Witt women who live in the area. One of the nurses remarked last night that Dan was by far the most popular guest they've had -- she also questioned the disproportionately large number of attractive female visitors (6 by my count). Now bear in mind that NIH is also where a lot of foreign dignitaries (kings, princes even) stay when they want some discrete, quality medical treatment that goes the extra mile w/r/t security. So Dan's parade of friends comes across more like a rock star's entourage at NIH. At least, that's how it felt when Tom Haushalter, in an ill-advised bout of drunken horseplay, set fire to the rug in the 7SW wing and then threw an IV pole at one of the orderlies. No, wait, that was one of the singers from Oasis. Yeah. They're never visiting Dan again.

But Monday was much better. All at once, it seems, the nasuea, pain, and grogginess are clearing up. At least for the moment. Dan's parents, who haven't strayed more than 20 feet from his bedside since last Monday, finally got to sleep at The Lodge yesterday -- comforted, at last, that Dan's condition is no longer critical. I actually got to hang out with the dude for a few hours yesterday while he was more lucid. The last hurdle, apart from the ongoing alchemy project that is his medication, seems to be occupational therapy. That's when a nice lady comes in to work with the weakness in Dan's left hand through a variety of therapudic exercises such as Fist Making, Fork Holding, Nose Picking, and other such essential skills. They even give him special therapudic toys to play with:



But for all of yesterday's successes, the Occupational Therapist didn't show up. They think it's because everyone's getting used to the non-holiday schedule again. So the O.T. is probably stuck at an airport in Ketchican or something.

The O.T. stuff -- silly though it may seem on the surface -- is very important because he's been eager to get back to the keyboard. He checks all the e-mail himself now, but if you're still wondering where to send stuff, just put the address request in the subject line and one of us will get you his mail info. He'll most likely be in his hospital room for another five/six days and then either at The Lodge or my place for a while, I'm guessing.

And if you're in the care package mood, I might suggest sending food. We all know the guy's got a sweet tooth, but they're also short on quality coffee here. I mention this because in the past couple days, his appetite's returned. I watched him scarf a chicken pot pie last night and I think he's making up for lost time now that the nausea has died down.

Crap. In the middle of typing that last paragraph, I just got a call from Dan's dad saying that today, Tuesday, has been more of a "Sunday." I was going to swing by this evening, but Dan's just issued a request to have no visitors tonight. Looks like the pain spiked back up again and they're still working on the medication strategy. Well, phooey. At least he's riding the pleasure/pain sine-curve in daily units instead of hourly.

We'll see how he's doing tomorrow evening when I can post again.

-->KM

WEEKENDER

Much to report! I've finally got all of our digital photographs consolidated, so I can give you a virtual film reel of Dan's week. To start, here's a little bed-side gambit that just won't die. NIH has purple latex gloves. Important difference. Dave thought it'd be funny to blow one up, stuff it in Dan's sleeve, and then call the nurse to see what happens.



And then Dave decided that crying wolf at NIH probably wasn't the best idea. So they went about planting the purple hand into a number of other photographs. Including this one, in which Mark sexually harasses Dan and I watch on as his lawyer.



The Hand even found its way into the normally non-silly couple Tom and Mindi.



Dan looks incredibly animated in these pictures. Even when he's in the ICU, he's radiating charisma:



Dave seemed surprised that Dan had the presence of mind to request a photo while hooked up to ICU widgets, but ... he did. There're plenty more pictures from the ICU, but the betadine stains on his face make him look like Hannibal Lecter again, so I thought I'd save those for anyone who really wants them. Speaking of the Hannibal motif ... "May I see your credentials, please?"



The final wave of security isn't the front gates, it's Dan himself. That's Mark getting screened. I have to stop now and confess that all of these poses were cooked up by Dan's ceaselessly caring and fun brother, Dave. Even this one, in which I present Dan with some of the cellar's finest Shasta cola:



Or this one, in which Dave, Dad, Mark and Dan get into the post-Thanksgiving holiday spirit by dressing up as the Three Kings. I have no idea what's on top of Dan's Dad's head.



But all antics aside -- Dan's newest challenge seems to be finding a diet that doesn't clash to violently with the Percocet. Yes, for those of you keeping track at home ... or taking your own drugs to better empathize with Dan's current state of mind ... we've gone from Morphine, to delaudid (aka hydro-morphone), and now to Percocet.

But wait! There's more! I have the whole Thanksgiving recipe here! Ahem.

1. Morphine (4ml) for pain
2. Dilaudid - hydromorphine (2 gal.) for pain
3. Flexoril (1 tsp.) for stool softening. I think.
4. Paprika (just a dash) for NIH's patented stuffing seasoning
5. Valium (???mgs) because why not?

Again, the timing and dosage levels have been an on-going project. But for all the crap I gave the NIH nurses in the past, I must make special exception for Alex. Pictured below, giving Dan an urgent phone call. I mean, themometer.



Alex, I later discovered, was reading this blog. So I need to further backpedal and qualify my assessment of the nursing staff. In all honesty, they're great. And a couple days ago, as Dan was wafting in and out of consciousness, he made a point to lift his weary hand and declare to Alex, "I just want you to know ... you're a stud man."

But one glimpse at the prescription list should give you some idea of the pharmacological balancing act they're trying to work out. Now Dan's awake long enough to realize that he's hungry for more than Luigi's Ice Snacks. Here's the whole family digging in:



That's mom, dad, sister Kristen, Dave, and Dan muching in support of Dan's restricted diet. And here's another picture set up to look like Dan's about to puke into the bucket mom's holding. Funny thing is, after this cute photo-op, Dan actually did puke up the chicken soup shown here.



Ha ha! Careful there, momma Stroeh! You've been swept up into another wacky photo stunt! Only this one's real!

All this only goes to illustrate my earlier point. Dan seems to be handling the frustrations of hospital life with characteristic aplomb. But between photos, he's still rather restless, wracked with pain, and hungry for some buffalo chicken strips. Until that day arrives, he's got a handsome crop of disciples to do his bidding.



At a moment's noctice, we switch into action mode ...



A brief progress report. On Friday, Dan was getting out of bed and sitting in the chair with relatively little ceremony. On Saturday morning, he was walking down the hall with the aid of a walker and, as usual, his photo-op crew.



He walks! Those of us gathered around and charged with chronicaling his recovery have taken to photographing every detail with an archival precision usually reserved for newborn children. His first words! His first food! His first walk! His first bowel movement! And it's important. It wasn't until a doctor came in and reminded us that he's only been out of ICU for less than a week that we realized how much progress he's really made.

The medication and general queasiness made it hard to look at the computer monitor near his bed, but lately he's been able to see my slacker editorializing in perfect resolution:



Um, yeah. That's a frown of approval! No, it's another pose. But I thought you'd like to know that he's been checking his e-mail regularly now. So I'll continue to blog for a while and he'll check his own mail, unmediated.

I would end this post there, but I've got so many photos left to share. I've spent the better part of a day trying to organize my update around the dozens of pictures, but I'm resigned to the fact that Dan's family snaps pictures faster than I can caption them. So for now, just know that there are many many more pics to come. But I'll leave you this final image, which I think sums up Dan's character, plight, and surroundings rather nicely:



-->KM

Thanksgiving

Back with another update -- no holiday puns worked into the composition, so I'm sorry. But plenty to talk about. And I guess the spirit of the holiday leaves me predisposed to talking about Dan anyway. Because as far as "things to be thankful for" go -- Dan's at the top of a lot of people's list, mine especially.

Let me tell you why before I dive into another goofball description of Dan and NIH. Anyone who just wants the straight scoop can skip down a bit.

At exactly this time last year (one Thanksgiving ago, to borrow from Arlo), I was just getting out of the hospital myself and prepping for a rather maudlin Thanksgiving. My mom was about to go INto the hospital for cancer surgery (successful, as it turns out) and Dan was just starting the first chapter of his recent cross-country odyssey. Fall of 2004 was a confusing, crisis-strewn time for my family. And the country, if you catch my meaning.

So Dan was in DC with Kate Adamson to see me in "Accidental Death of an Anarchist" -- a lovely evening of theatre that was canceled because of my sudden trip to the hospital (another story). And Dan, being the generous all-around-super guy he is, decided to stick around town and have Thanksgiving with my family until things calmed down and we could more or less put ourselves back together after a stressful bout of hospital visits and holiday chaos. I'll never forget Dan visiting me everyday, cheering us up, picking on my sister when I was too tired to fulfil that brotherly duty. Around the time I got out, my mom got the news that she would have to go in. So in the middle of all this, there was Dan helping out as a sort of one-man-family-spiritual-epoxy for us. If that makes sense.

Most of you readers have spent enough time with the dude to know what I'm talking about. But I'm reminded of it every time I walk through the NIH hallways. And the narrative could not be more convenient: this holiday devoted to giving thanks always creeps up just when some wacky crisis puts my workaday frustrations into stark relief. I could elaborate, but let me finish the story by simply saying that Dan has, over the course of the eight years I've known him -- but last fall especially -- saved my life in one way or another. And for that, I will always be thankful.

Some people carry this perpetually thankful, benevolent attitude with them year-round. Like Dan. Others need reminding. Like me. But I wanted to add that to the update here because I'm sure many of you have had the same experience. And because the holiday allows for this kind of mushy testimony.

Now ... back to real story.

THURSDAY VISIT and the COMING WEEKEND

The holiday schedule at NIH has left Dan without a regular nurse for the past couple days. Oh, someone is always there ... but she's always new and has to start from scratch. This involves mispronouncing the name "Stroeh" every time she looks at his chart and then getting it right juuuuust as it's her turn to check out and hand off the morphine to the next nurse. So none of us know who his real nurse is. By my count, he's now had 47 of them. All working in little holi-dazzle shifts to cover turkey-munching time for everyone.

NURSE: Welcome, Mr. Strow!
DAN: Stray.
NURSE: I see here we're treating you for a head cold?
DAN: Neurofibromatosis.
NURSE: Head cold ... neurofibromatosis, whatever. We can cure anything!
DAN: Really?
NURSE: Do you know how powerful this place is? Have you SEEN our security system? They don't requisition nuclear blast doors and M-16s for any local clinic, you know.
DAN: Yes, it's --
NURSE: I just found out we cured Polio! In, like, a day! Isn't that cool?
DAN: Yes, could you --
NURSE: So I'll be back if you need anything. It says here you got your pain meds at four-thirty, so ... you should be good to go for now.
DAN: I'm not. And I didn't.
NURSE: Didn't what?
DAN: Get any pain meds. At four-thirty.
NURSE: It says on your chart ...
DAN: Believe me, I know when I've had pain meds.
NURSE: How's that?
DAN: Because the torqued agony of spinal surgery finally gives way to a sublime blend of euphoria and nausea.
NURSE: I see. Well, the chart says ... Oh! Wait. It says "fourteen-thirty" not "four-thirty." Wow. You're overdue for some pain meds!
DAN: That's what I've been --
NURSE: Sorry about that.

16% of that conversation actually happened. I wasn't around to see it, so I'll let you guess which part. I realize my depictions of the NIH staff haven't been all that kind. It's just easy to mock the staff when your buddy's in pain, I guess. To be fair, they're really taking good care of them. They just can't seem to get on even footing with this pain-relief schedule. Hopefully that'll change after the holiday.

I went over this afternoon to see if Dan was up for conversation or, failing that, more of your e-mails read in celebrity voices. Kristen, his sister, is in town now. Mark just got here and is crashing at my place tonight and we're going to try and synch up with Tom&Mindi, LLC tomorrow for brunch NIH-style. Everyone got to rotate out for thanksgiving dinner at The Lodge and just when we were all back in the same room ... it was time for another magical morphine nap!

This has been a tricky cycle. Dan calls me from the hospital and sounds great. More lucid and grounded every day. So I rush over to hang out. By the time I get to Bethesda and through security, he's on his next dose of pain meds and fades back to sleep. So the goal is to hang around tomorrow long enough to catch both sides of the wake-sleep-wake-meds-sleep wave.

I was cleaning my house for Mark's visit and dozed off doing laundry (turkey coma). Around 11pm, Dan called -- and between the disorienting wake-snap of post-poultry napping and the general rhythm of Dan's voice, I almost forgot he was in the hospital! He sounded like Dan. And it looked like he was going to be awake long enough for a late-night hangout. You know ... clubbing or something. So I dashed over to Bethesda, hoping to rendezvous with Mark as he got into town and ... another magical morphine nap. I didn't get over there or meet up with Mark before he went back to sleep. But we're going to get this right tomorrow.

Dan has asked me to annotate these entries so you can piece apart my embellishment from the real story. So. To clear the air: Dan would like to state that he doesn't really have deep crushes on the aforementioned Hollywood ladies (Rachel McAdams, Natalie Portman, Scarlet Johannsen, et al), but that he wouldn't be disappointed if any of them wanted to date casually. He would like to add that the stuff about Johhny Weissmuller is absolutely true, however. From now on, I'll put a little "*" after details I've made up.

Wednesday Night Visit

Sorry for the belated update -- I visited Dan last night and then camped out in a cafe to write this post, but my laptop has been on the fritz lately, so it shut down mid-quip. And since I'm writing this on my laptop and not my office machine, the Microsoft Paint drawings will have to wait.

Dan can sit up now -- at about a 45 degree angle. This seems to have made a huge difference in his general attitude. He's still in a lot of pain and the nurses still haven't found the right dosage/schedule for his pain medication ... so I will continue to mock them. But being able to sit up makes him less groggy and more functional. He's still on a liquid/plasma diet consisting of water, juice, and Jell-O. I understand NIH has patented some gravy-flavored Jell-O for special occasions like today. The rest of the family is having Thanksgiving Dinner at "The Lodge" -- a rather plush hotel on the campus that looks and feels like it should be on a mountainside in Vail or Lake Tahoe.

Polly left yesterday morning, Dan's buddy Mark is coming to town tonight and Tom and Mindi will be here tomorrow! So there's a healthy rotation of friends and loved-ones for the next couple days and hopefully they'll get Dan off the morphine soon enough so we can have a sustained conversation with him. I promised Dan I'd make a more detailed post today, but I'll have to return to the keyboard later this afternoon -- turkey-cooking duties beckon. I'm going to visit him again this afternoon and maybe escort Mark over there tonight or tomorrow morning, so ... be sure to send on your T-day wishes. I'll post again tonight.

-->KM

Tuesday Night Visit

Visiting Dan at NIH feels oddly like visiting Hannibal Lecter -- not because Dan eats people, but because of the security stops, atriums, hallways, and elevators one must pass through to find the guy. NIH is built like a spooky, but plush, military think tank. First our car was swabbed down with nifty Terror-era chemical/bomb detecting gadgets in a little port-a-bunker next to the main gate, which was itself girded with a dozen armed guards and one of those spring-action barracade devices. Not the normal gates of yore:



No, this was one of those gates designed to halt charging fuel trucks or IEDs. Why terrorists would consider bomb-rushing a complex of buildings filled with already-sick people is beyond me.



After that, and the bomb-sniffing bunker, and the search for Building 10 ... my mom and I walked through a huge atrium, several hallways, and finally got to Dan. But everything was very quiet, very cavernous, very new, and very corporate. It had New Hospital Smell. And while I can't describe that, let's just say it's much better than Old Hospital Smell.

So there was Dan -- on strict orders to remain on his back until 2pm tomorrow. The nurse was administering hourly doses of morphine, just as the pain began to spike again. Dan's brother Dave, Dave's girlfriend Polly, and Dan's mom and dad were there. They've been by his side for the last 48-hours. Polly's nursing experience came in handy as she tried to convince Dan's current nurse to switch to a more uniform morphine schedule. Because the script says "as needed," Dan technically has to push a button every time he wants more pain medication. This button summons the nurse, who ... after another 10 minutes of paperwork and snack-munching ... will saunter to your side and give you the drugs you needed a 1/2 hour earlier. So hopefully they'll find a groove that lets him sleep for more than 50 minutes at a time.

The weakness in his left hand seems better. At least it sure felt that way when the dude punched me for bringing the wrong flavor of Gusher's Fruit Snacks.



Surprisingly, none of us had a digital camera on hand. So these drawings are the best I've got. Dave has some "before" photos we'll upload later on. Dave would also like to state for the record that conversation with Dan has been minimal, but that Dan "continues to serenade us with his melodious flatulence."



I'm going to stop now. I'm sorry if this isn't what you wanted in your daily Dan update -- but most of Dan's time is filled with waiting, sleeping, and repeating his life story to each new nurse who attends on him. The pain runs neck and neck with the tedium, from the looks of it. I printed out the last batch of your e-mails for him, read some of them aloud in funny voices, and left the others by his bedside for later. I only got to hang out with him for about a half hour -- that nurse (above) comes in all the time to clear out the room and deliver new medication. But he seemed good, given the circumstances -- and your kind words definitely helped cheer him up.

Tomorrow will be another baby-step toward independence: Dan's going to try sitting up in bed. I'm going back to NIH in the afternoon or evening, so expect another update around that time. Dan's high-tech hospital bed has a live DSL internet connection wired through it, so he may be checking the e-mail account (sidebar) from now on. And don't be surprised if you get a post from the man himself before long ...

-->KM

OUT of ICU

This morning Dan was moved out of ICU (excellent news) to his room in Building 10 on the main NIH campus. So the progress from post-op to general recovery is moving along quickly. I'm gonna see him tonight and I'll be bringing printouts of all the lovely e-mails you've been sending. If you have any basic logistical questions that you need answered, put them in the subject line and I'll reply. Everything else is going straight to Dan, so please be as gushy as you want to be since I won't be reading them; just printing them out and delivering them.

After tonight, I should have specific information on where exactly you can send your own letters, flowers, etc. I should remind you that Dan has a special weakness for chewy cinnamon candy and anything featuring Rachel McAdams. Or Natalie Portman. Or Scarlet Johannson. Or Johhny Weismuller, but that's another story.

In other news, the doctors are trying to accurately time the administration of pain medication -- Morphine and Valium, if I recall -- to ease the post-op pain. According to Dan's dad, he was in an unusually large amount of pain this morning and it's just a matter of finding the right dosage. As most of you know, Dan's pain threshold is superhumanly high. Tom and Mindi can testify to the night he unflinchingly reached into a blazing fondu pot to retreive a lady's earing. Chivalrous, yes, but also technically impossible. Since his diagnosis eight years ago, he's refused regular pain medication in lieu of ... well ... cinnamon candy and Rachel McAdams movies. And it's a formula that's always worked.

He reported some weakness and tingling in his left hand and arm -- the doctors anticipated as much so it's nothing unusual. And considering the delicacy of the procedure, this is a good sign (insofar as it's the only lingering side effect and can probably be remedied with general physical therapy). As of this afternoon, Dan was back asleep and has strict orders to remain on his back for a couple days. Hopefully he'll be up for a visit tonight. Any stuff in the inbox by 7pm will make it to his bedside today.

Expect another post late tonight ...

-->KM

SURGERY COMPLETED

I just got the news at 8:15pm EST -- Dan is out of surgery and recovering in the ICU at NIH. The doctors felt pretty confident that they got as much tumor material extracted as possible. So the doctor's immediate goals were met. ICU visiting hours are pretty strict, so hopefully he'll be jockeyed back to his regular NIH penthouse suite soon enough. At which point, I will have direct live coverage and maybe even real quotes from Dan himself. So far, Dan's only comment to the press has been: "Isabelle? I knew her once. She was a fine dfoafffiglok ... Who are you?! GET OFF MY PORCH!"

No, he's sleeping now, with his father and brother at his side. Apart from some brief post-surgical nausea, his condition has aligned snugly with the best-case scenario offered by the doctors. Until tomorrow, no news is good news. Dan's dad sits at the top of the phone tree here, but if you have any direct messages for Dan, post them here or e-mail using the link in the sidebar. I'll forward them while he's out of commission.

-->KM

12 Hours Later ...

Hello everyone -- it's guest blogger Karl with round-the-clock Tumor Night coverage. Or something. I'm waiting for more news from Dan's parents, but the last two reports (2pm and 6pm) were the same: Dan is still in surgery, his condition is stable, and the vast flank of extremely smart doctors are trying to separate the foqf8a98sdf from the lower parietal idaffigglism. At this hour, there's nothing new to report. In all likelihood, Dan will move to the ICU tonight for post-op recovery. Tomorrow he may be ready to talk. The doctors say there's a rare chance he'll come out of the operation speaking only in anapestic meter. Let's pray for free verse, shall we? Because we all know what Dan's like when he's on painkillers and Yeats. By Wednesday tea time, he'll be spouting measureless reams of signature Stroehprose. At least, that's the prognosis I've chosen.

In the meantime, I'll have information on where you can send cards, flowers, candygrams, and the like. Stay tuned -- I'll post again the minute I hear from Dan's family.

MEET MY FRIEND KARL

First of all, I've posted twice in the last two days (believe it or not) so, check out Saturday's post AND Sunday's post before you read on, will ya?

I'll keep this brief since it's time to head off to the hospital, but I wanted to introduce you to my good buddy Karl who will be posting here in the next few days while I'm out of commission. Until I ungroggify, he'll be giving you updates on how the surgery went, how I'm doing, what's coming next, etc., etc.

Just so's you have a mental image, here's a nice picture of him as Warren in Kenneth Lonergan's This Is Our Youth at the Studio Theatre here in DC:















Cute, huh?

Sorry, ladies. He's got a girlfriend.

Anyway... He'll be giving you all the info. If you have specific questions or need to reach him, he'll be checking the mail at dans.tumors@gmail.com.

Thanks again for everything.

You'll be hearing from me again soon.

peace,
D

SURGERY DETAILS

So—tomorrow’s the big day. Surgery is at 8 AM and they say it’ll last between six and eight hours. I’ll be in the ICU tomorrow night (which'll be a ball, I'm sure), but I should be back to my regular room by Tuesday. (The regular room, by the way, is pretty nice—flat screen TV, DVD player, internet access… Not bad at all for hospital digs.)

And now, here’s what they’re doing (for those of you interested in the nitty-gritty of it all). Check out this nifty diagram of the cervical spine, (compliments of YourSurgery.com):















First of all, they’ll go in from my back to get at it, and then they’re going to do several things: A C6 and C7 laminectomy, a C8 foraminotomy, and they’ll remove as much tumor as they safely can from the C7 and C8 nerve roots.

Lami-what? you're asking. Forama-huh?...


The Laminectomy














The lamina are the plates of bone in your spine which sort of form a roof over your spinal canal. Above the lamina is the spinous process (the bumpy outgrowth of bone to which muscles and ligaments attach).

In a laminectomy, both the lamina and the spinous process are removed in an attempt to decompress the spinal cord. In the diagram above you can see these. The area inside the red box will be removed, but only on two vertebrae (C6 and C7). They say this doesn't cause significant weakening of the spine, really, and I probably won't even have to wear a neck brace. Which is nice.

"Do you put that back on?" I asked when they told me about this, "The bumpy thing? Do you put that back on?"

No. They don't put it back on. But they say that I might not even notice a difference at all.


The Foraminotomy















The neural foramina (or neuroforamen) are the holes between the vertebrae that allow the nerve roots to exit the spine (see inside the red box above)... My tumors have grown to the point that they've completely obstructed the neural foramina in C5, C6, C7, and C8.

In a foraminotomy, pieces of bone are cut away to enlarge the foramina and allow the nerve roots more room. The doctors are performing a foraminotomy only on the foramina of my C8 nerve root, which is located between the C7 and T1 vertebrae.

This is sorta funny: I keep calling it a "foramiTONOMY" rather than a "foramiNOTOMY." I know the correct terminology, but I keep doing it. Today I decided that it might be because here I am, Mr. Fiercely Independent, on the verge of weakness and pain and who-knows-what-else (which is to say getting ready to be very dependent on others for even the simplest things), and I am subconsciously making the procedure less about cutting away obstructions in nerve pathways and more about cutting away my independence, my autonomy: A "foram-AUTONOMY." (Ha.)

On top of all this bone-cutting, they'll also be doing their best to remove chunks of tumors, focusing on the tumor that is most significantly compressing the spinal cord. As you might already know, NF tumors grow in and around nerves (like marble cake, I was once told) and so it's not as simple as going in and cutting a single mass out. The doctor will be taking a little here, a little there, all the while exercising a great deal of caution so as not to harm the nerve roots themselves. There will be also neurophysiologists in on the surgery monitoring nerve conduction and motor pathways, which essentially means that they'll be keeping track of how my nerves are working as the surgery goes on.

Post-op information, like so many others things involving NF, is a little cloudy. I might be weak and numb and tingly, I might not. I might loose a little bit of sensation in my pinky and ring fingers, I might not. Rehab therapy is probably going to be necessary, but we're not sure how much or where it will focus.... Oh, well. I'm sorta used to the ambiguity. Regardless, I'll certainly keep you up-to-date on what they have me doing.

Finally, I want to send out a big, fat THANK YOU to those of you who've sent letters and cards and e-mails and gifts. And, of course, to everyone for all the good vibes-prayers-healing energy-etc. I really appreciate it. There's nothing like having surgery to realize how many incredible friends you have. Many, many thanks to you all.

Next: Time to meet Karl.

IN RETROSPECT

I apologize for the lengthy silence on my end. I’m still trying to find my blogger-grove, I guess, and with my Dad’s retirement party in Ohio and packing for my time in DC things have been a little frenetic. Still, I realize that it’s been almost two weeks since I posted and—as someone wrote to me in a where’s-the-next-post? e-mail this morning—“that’s just wrong.” So here we go:

Dad’s retirement party was a smashing success. Thanks to the planning committee and the seemingly tireless work of its chairperson, Katie, everything was (dare I say it?) perfect. Food, wine, gifts, speeches, presentations, more gifts, music, memories, even more gifts… it was a spectacular night. Dad’s former co-pastor, Deborah, was the keynote speaker and she gave a brilliant talk that was simultaneously hilarious and moving, the kind of tribute Dad deserved…. To my father’s great credit the word on everyone’s lips last Saturday night was Grace. Almost every speaker said that he had taught them about God’s Grace. And I gotta say—If that’s not one hell of a legacy, I don’t know what is.

My siblings and I, of course, had a hand in the evening’s festivities. In my family we do a lot of performing for one another; birthdays, anniversaries, graduations all require something dramatic to mark the occasion. Christmas morning takes hours because every other gift is accompanied by a reading or a song. Anything worthy of a celebration is worthy of a presentation, and the bigger the celebration, the bigger the presentation. So, for Dad’s party, we prepared 45 minutes worth of poetry, skits, and original songs. And it all went very well.

Being up there, though, performing in front of hundreds of people again, was interesting for me. It was one of those reality check moments that I occasionally experience, one of those oh-that’s-right-I’m-disabled moments. Shuffling around on those rented risers, trying to play guitar while standing, walking (sans cane) with my hands full of props, I felt very unsure of myself physically. Now, it wasn’t that long ago that I was performing it is no desert all the time, wandering around a stage for two full hours without a cane or a sibling to lean on, so it got me thinking, remembering how I got here.

Back in 1994 when I was still healthy and unendingly energetic, I severely tore my quad muscle while training for soccer, an injury that benched me for the entirety of my junior year. By the end of the following summer, considering that my leg was refusing to heal and my passion for theatre was growing, I opted out of my final season of high school soccer and instead joined a touring theatre group. At the time it felt a little like a choice between macho-teenage masculinity and awkward-teenage intellectualism, but I don’t remember feeling all that torn. From that point on I strongly identified myself as an artist and the athlete in me started disappearing. Still, in the years following my decision to quit soccer I had a bit of an inferiority complex when it came to my athletic abilities, and I remember times when I’d try to take part in sports and I’d think to myself, “I have to start working out again—I am so out of shape.”

Of course, I wasn’t really out of shape at all…. Well—I guess I was, but that wasn’t the real reason for my lack of strength. Looking back on that period of my life, I realize that there were a lot of warning signs that I simply dismissed in that way: “I am so out of shape.”

The summer before my freshman year of college, Kristin and Ken (my sister and brother-in-law) took me out in their boat on the Ohio River and tried to teach me how to water ski. I was determined to learn, but time after time, as the boat shot forward, I’d pop up for a split second and then hit the water with my face. I probably tried fifteen times. I just couldn’t pull myself out of the crouching position and up onto the skis—I just didn’t have the leg strength. “I am so out of shape,” I said to myself. “I have to start working out.”

Just after my arrival at Witt, I came across some guys kicking around a soccer ball. “Lemme knock one,” I said, and tried to give it the ol’ Stroeh-power-kick I’d learned from my siblings. Instead of sailing into the air and landing perfectly at the feet of the guy 40 yards away (as it would have done two years prior), the ball shanked off to my right, feebly rolling to a stop in the high grass. I was embarrassed and annoyed with myself and undoubtedly made some comment about injuring my leg—“Oh, man,” I probably said to the guys, “I ripped up my quad real good a few years ago and I still haven’t recovered. I gotta get back into shape.”

Then, of course, there was the “weird walk” I ignored for who-knows-how-long. My brothers noticed it in November of 1996 and made me see my doctor, who sent me to a neurologist, who sent me for a CAT scan… and the rest is sorta history.

But not only history, I guess, because it’s not over. The creeping slowness of my increasing weakness prior to diagnosis kept me blissfully ignorant of what was happening in my body, but now that I know that I have a progressively debilitating disease, one would think that I would be more attentive to increasing fatigue, or more pain, or changing sensation. And that’s not really the case. Prior to rolling into Rehoboth Beach I never would have guessed that I’d be sitting here today in the gorgeous Family Lodge at NIH, writing a blog about my impending surgery. But, now that I know what’s up, I look back and everything seems so clear; the warning signs were everywhere: Once in a while in the morning I have a difficult time pulling on my socks and tying my shoes… Sometimes at dinner I can't hold my fork properly... The frequency of cramps while playing guitar or writing in my journal definitely increased over the last year… Occasionally, while smoking one of my beloved Al Capone cigarillos, I'm unable to hold it between my forefinger and middle finger; it slips out and hits the ground (particularly upsetting if the ground is dirty and I'm outta cigars).

And it’s not only about my hands. Being back onstage last Saturday reminded me that there have been changes in my legs in the last few years too. Standing there with my brothers and sister, leaning on John so I wouldn’t fall, I knew that things were different. My whole body is weaker than it was a few years ago, I just didn’t notice it as it was weakening.

But HOW? I sometimes ask myself. How is it that I don’t notice?

And I don’t really know the answer to that. I guess it mostly has to do with the fact that, while I’m perfectly aware that I have NF, I just don’t think about it that often. Even with the braces and the cane and the soreness in my legs and back, I have other things on my mind—

“How am I going to end Act One?”

“Should this be in present tense or in past tense?”

“Would it be better if I spent less time writing and more time trying to get some stuff produced?”

These are the things that slam around inside my head all the time. There’s no room for NF. Plus, I’m an incredibly lucky guy with great friends and an amazing family. I have work that I’m passionate about and adventures I want to pursue, I have a beautiful apartment in a city I've always wanted to live in, my roommate cooks gourmet meals all the time and likes to share, and every Monday Bravo shows reruns of The West Wing all night long. Even with the pain and fatigue and weakness, I’m really quite content. And that’s how, I guess. That’s how I don’t notice.

As I write this, my left forefinger is twitching, teasing me, hinting that I’m going to have to start typing one-handed soon. So, I’ll close. My parents are staying down the block and Deborah (the brilliant former co-pastor) just got into town, so we’re going to go find some food. It's always fun to pick the restaurant when you know someone else is paying....

Tomorrow's Post

SURGERY DETAILS (woo-hoo!)

and

Meet My Friend Karl

I'll post tomorrow. I promise.

- D

A PEAK INSIDE

Last month, while I was in Rehoboth Beach, two of my best friends came down from New York to visit me. Though I was close friends with each of them even before they knew one another, they’re now one of those couples whose names are inextricably linked in my head—

“Tom and Mindi.”

“Mindi and Tom.”

Rolling off my tongue, it feels like their names have always been said together.

Since I was so close to both of them before they started dating, I’ve become a weird sort of third wheel in the relationship. They’re very protective of me, very insistent that I keep them abreast of how-I’m-doing-and-what-I’m-up-to (though, admittedly, Mindi wants to be sure that I’m eating well and getting enough rest, while Tom is more interested in how much I’ve been writing). When we walk through Manhattan they often flank me, so that, in the event that I trip, they’re sure to catch me, regardless of the direction in which I fall. They become enraged when they feel that I am being mistreated, personally or professionally, and I know without a doubt that there is no favor, big or small, they wouldn’t be willing to do for me.

So these are the friends that were strolling with me down Rehoboth Avenue, the town’s main stretch, when a man in his mid-forties, sporting mutton-chop sideburns and a t-shirt that read “Beer: it’s what’s for dinner,” turned a corner and began walking in our direction. When he caught sight of me, however, he stopped and—there is no other word—gawked at me. He gawked at me as I limped towards him, shifting his gaze from me to my cane and back to me. Mindi and Tom, of course, noticed this immediately and as we passed Mr. McMuttonchops Tom shot him a disdainful look and said, “Yeah, it’s a CANE, jackass.”

Further down the block, Tom and Mindi still seething, I laughed, because that kind of thing—strangers staring at my cane—happens all the time and it doesn’t bother me at all. I mean, in some ways, who can blame them? How many 28-year-old men walk with canes? If I were temporarily injured, I’d probably be walking with crutches; if I were more severely disabled, I’d be in a wheelchair. I get weird glances because, as I’m sometimes told, I don’t really “look disabled.” One of the questions strangers most often ask me is this: “Is the cane just for show or do you really need it?” And I suppose it makes sense that a guy like me might be wandering around with a cane just to look cool (especially in this town), so it’s a valid question.

Of course, it’s fine to be the guy suspected of using a cane as an accessory when I’m on the subway, but when I take advantage of some of the “perks” of being disabled, then I start to worry that people will suspect I’m a faker. At TKTS in Times Square (where you can buy half-price tickets to Broadway and Off-Broadway shows) they have a policy that disabled people don’t have to wait on the line that loops down Seventh and up Broadway and around and around. Every time I walk up to the windows I find myself over-emphasizing my limp, trying to make myself look weaker than I am. I do the same thing when I’m back in Ohio Christmas shopping, pulling into a handicapped parking space next to a little old lady helping her husband into a wheelchair. Parking, of course, is insane at Midwestern malls and here I just pulled into the last handicapped space in the lot. She looks at me, eyes all squinty, and so I heave myself up outta the car, turn my right foot in towards my left, lean hard on the cane, and shuffle slowly into the store. Just to be sure she buys it.

So, yeah—I guess I don’t “look disabled.” But neither, I suppose, do I “look sick.” And that’s an important thing to point out. People who are permanently disabled as a result of accidents or developmental disorders and thus rely on wheelchairs or scooters or walkers to get around, are constantly trying to shake the misconception that they’re sick. They’re disabled, yes, but other than that, they’re healthy.

That’s not the case with me. And I realize that one can’t just look at me and determine that I have tumors running throughout my body. I certainly couldn’t tell in the years preceding my first MRI. Even when I was diagnosed eight years ago, and for several years thereafter, I didn’t have a very clear mental image of what exactly my situation was internally. A few years ago, though, I asked to see copies of my scans and I gotta tell ya—I was amazed. Obviously, I knew that the tumors were pretty prevalent, but I didn’t expect them to be as prevalent as they are. And, to me, it’s all pretty cool, pretty remarkable. Staring at the latest scans with my doctor a few weeks ago I said, “How is it that things are this advanced, but I’m still so high-functioning?”

“We don’t know,” she said. “It’s a mystery.”

(On one hand, I guess it is a mystery. But on the other hand it’s not a mystery at all. If you know what I mean.)

And I really dig my MRIs—I freakin’ LOVE ‘em—because they remind me how lucky I am to still be capable of driving alone cross-country and tromping around Manhattan. So, it’s in that spirit that I post a few scans here. I thought you might like a better idea of what exactly we’re dealing with....


Here's what we call the lumbo-sacral spine, the lower back. With the exception of the kidneys there at the top, everything that's white is tumor.



















Bizarre, huh?...

Here's the upper spine. Again, with the exception of the brain and brain stem, the white is tumor.
















And now here's the problem spot we'll be addressing on the 21st: the cervical spine. In this one the spinal cord is white and the tumors are those gray nodules. Those are the tumors that the doctors will be working on.




















So, that’s what’s up inside of me. My friend Mark and I used to joke that I should carry copies of these around to show people when they give me those baffled looks or suspect me of faking a limp to get a prime parking space…. Of course, if I did that, they’d probably stare more, huh?

More soon.

- D

THE LONG VERSION....

So, it was late September and I was terrifyingly close to the end of my year-long, cross-country road trip. After twelve months, thirty-four states, twenty-three thousand miles, and God-only-knows-how-many pages, I’d landed in Rehoboth Beach, Delaware and was trying desperately to end the trip well, which is to say to end the trip prolifically. I always explain to non-artists that you can tell a writer’s not really working enough when he responds to the question “What are you working on?” with a list—

“Well there’s a new play, and the beginning of a film script, and a few short stories, and the novel, of course….”

—and that’s sorta where I was… working on everything and nothing at all, writing constantly, it seemed, but not really accomplishing anything of note on the six or seven projects I was supposedly immersed in. I worked most of the day, every day, scribbling in my journal and pounding at my laptop, but forward motion on first drafts felt minimal.

Still, I was wandering around in a kind of giddy haze. The road trip had been truly remarkable—worthy of a blog of its own probably—and Rehoboth was proving to be the perfect final stop. For those of you who don’t know it, Rehoboth is more like a village that happens to be next to the ocean than a “beach town.” It’s peaceful and quaint and relaxing. I was staying in a gorgeous house offered to me by the always-generous Baird and Sarah Tipson and I was reveling in the quietness of it all, especially since I knew that soon I’d be heading home to Manhattan. I’d also been befriended by some of the locals, spectacular people with good vibes and great stories, and I spent a lot of time with them, sipping coffee and talking for hours about Bush and Harleys and Phish and whether Moses was a liar. It was great.

Then one night, while struggling with a piece for the theatre company I work with, something weird happened. I was typing and suddenly my left forefinger tensed up, folded down into my palm, and refused to move. It was sorta like a cramp, but not quite. I kept shaking my hand over my head, trying to loosen it up a little, but to no avail. Now, you have to understand that bizarre stuff like this is happens relatively frequently to my body—cramps and ticks and spasms come and go—so I didn’t think much about it. I just closed the laptop and went to bed.

The next day, though, I got up, made coffee, and sat down at the desk to find that the hand was still not letting me type. It was then that I decided to call NIH, just to check in. I was due for a visit anyway and sometimes it takes these weird things to remind me that I am, in fact, sick, and I need to be seeing the folks at NIH more regularly. So, I called them and explained to my nurse, Andy, what was going on with the hand and she scheduled me for an appointment in mid-October. Several hours later, however, my doctor called to say she was concerned about this new development. “Can you come in on Friday?” she asked. I was supposed to be leading a youth retreat for my buddy Drew’s church on Friday so I told her I’d check it out and call her back. “If I can’t come Friday, I’ll come Monday.”

Moments later, serendipitously, Drew called to say that a lot of kids were canceling on him and he wanted to reschedule the retreat.

And so, on Friday, I went to NIH and did all the usual stuff: physical exam with my NP Joanne, MRIs, meetings with my doctors. Andy had also set up appointments with Rehab medicine and neurology so that we could explore in depth what was happening with my hands.

One of the interesting things about having an illness like NF, an illness that manifests itself in slowly-progressing disability, is that it’s difficult to tell exactly how much symptoms have changed in a given period of time. It’s like aging. Since you stare at your own face in the mirror everyday, most of the time you can’t necessarily say that you look significantly older than you did a year ago. Then you see a photograph from last year’s Christmas Party and you think, “Where did all these wrinkles come from?” or “Is my hairline receding?” Suddenly you’re hyper-aware of any aging you might have done.

And that’s how it was at NIH. They had me do exercises to test the fine motor skills in my fingers, and I was shocked at their weakness. They pointed out to me the change in my hands—the muscle between my thumb and forefinger and the one between my wrist and pinky have atrophied noticeably. And suddenly I’m thinking to myself, How often in the last few years has my hand cramped up while writing in my journal? How often have I been unable to hold a pick while playing guitar? How often have I been too weak to pull on my socks in the morning?.... It wasn’t so much that I was worried, it was more that I was second-guessing information I’d been giving my doctors: Was it possible that, in my efforts to (as they say) ac-centuate the positive and e-liminate the negative, I’d been e-liminating some important information from my list of symptoms? Or was all of this relatively new?

Not that it mattered. What mattered was: Why is this happening? and What are we going to do about it? And it seemed like the answers to those questions were relatively easy to determine.

Some of you might not know this, but my tumors aren’t limited to my lower back and pelvis. Though those were the tumors we discovered first, and they are the largest, there are tumors (or fibromas as they’re called) running down the nerve pathways throughout my body, from my skull to my legs to my arms and everywhere in between. In the last few years, we’ve been keeping an especially close eye on the upper back, what the docs call “the brachial plexus,” and the upper spine, “the cervical spine.”

What it boils to is this: There are tumors around my cervical spine that are causing significant compression of the spinal cord. Though it doesn’t look like these tumors have grown dramatically in the last few years, the tumors doing most of the compressing happen to be intertwined with the nerve roots that control the forefinger, thumb, and middle finger. While the tumors down my arms may be part of the problem, my doctors think that the best place to start is the cervical spine.

So—we’ve scheduled a surgery for November 21st. The doctors will go in from my back and attempt to scrape away some of the growth from the tumors, relieving the compression on the spinal cord. They’ll also be operating on the spine itself in an attempt to create more room for the spinal cord and the nerve roots. I’ll post more details on the surgery itself sometime soon….

And that’s the long, rambling version of the story. Somewhat ironic, I know, that I should begin to loose the ability to write and type, but hopefully this surgery will take care of things, and I'll be back to my obsessive work schedule by Christmas.

Anyway, just wanted to keep everyone up to date. Check out this page in the coming weeks for news on what’s happening.

More soon.

- D