A little worried

You know how I mentioned yesterday that I wasn’t sure whether Paul’s skin graft looked different from day to day? Well, today when I changed the dressing, it looked different, and in a way that doesn’t seem good to me. Most of the graft looks the way that I think it’s supposed to, and at the edges it appears to be connecting quite nicely to the surrounding skin. It’s even starting to look like fairly normal, if somewhat reddened, skin (which is quite a change from the bruised purpleish color it had when I first saw it).

However, there’s an area in the middle, over some of the tendons, where it looks like the graft is thinning out. It’s the area that I described last week as looking a little raw, the area that Dr. Futran and Dr. Schwartz expressed a little concern about, but thought would heal fine. Today it looked to me as if what I was seeing in the middle of that area was not skin tissue, but possibly the tendon that should be underneath said skin tissue. (But really, what do I know about what tendon looks like? I’ve seen tendons in a frog from high-school biology lab more than half my life ago, and little bits in the occasional cut of meat.) Strangely, this small questionable area has elicited the first squeamish feelings that I’ve had throughout this whole process… which leads me to believe that, for me at least, the fear that something’s going badly is a major contributing factor.

So, tomorrow morning I’m going to call our helpful nurse practicioner Carol, and see about getting Paul in so that someone can take a look at his arm.


It seems that each day Paul is doing better than the day before, but the changes are very small. Have I mentioned the concept of a “just noticeable difference?” JND is a term from psychophysics; it’s the difference between two stimuli that is detected as often as it is undetected. Now you see the change, now you don’t. That’s the magnitude of change we’re talking about now.

Is anything different today? Is Paul’s jaw less swollen? Uhhh…I think so. Are some of his consonants clearer than yesterday? Perhaps. Does his skin graft look different? I’m not sure.

And yet, over time, the JNDs add up, and the accumulation of all those miniscule changes becomes really noticeable. OK, I’m ready…

Mac OS X- a good distraction

My computer, a 1998 Macintosh PowerBook G3 running MacOS 9, has done outstanding duty, and still isn’t obsolete, just increasingly clunky. And, since I walked away from the Internet business, there really hasn’t been a big need for me to have the newest, fastest hardware or software. So, for a few years, I’ve been sitting on the sidelines while Apple has produced not only sleeker, lighter, faster laptops, but also a complete revolution in its operating system, called OS X.

Which is not to say I haven’t made multiple visits to the Apple store, admiring the slim, light, new machines, or been fascinated by the power of the new operating system, or sat in cafes envying the college students surfing the Net with their wireless connections. It wasn’t that I didn’t WANT to do all those things I could do with a new computer, but I didn’t NEED to.

After my diagnosis, I figured it would be fair to start really thinking about a new computer. I promised myself that if I made it through surgery, I deserved a prize, the new, sleek white iBook I’d long been coveting. When my dad came to visit right after I got home from the hospital, he was carrying the very thing! I got my prize, and hand-delivered!

Of course, switching to a new computer is always a chore, and the switch to OS X amplifies this. I didn’t really have the energy to even think about it until this week. Over the last few days I’ve started to put this new machine to work, and feel my way around, discovering all the new features. The new operating system comes with a whole set of new programs, and I’m now trying to decide which of the new ones are an improvement over the ones I’m used to, or whether I just want to upgrade my old ones. Is the Apple Safari browser good enough? Do I like their new Mail program? Is it worth copying all my addresses into the new Address Book?

(I will say, as I listen to an old Earth, Wind & Fire CD through my headphones, that the iTunes program is WAY better than the old CD Player program from OS 9. And I haven’t even STARTED downloading music yet.)

So, I have the perfect thing to distract me from my obsession with solid food, and to keep me occupied during the long days of healing ahead. (And, when I’m sufficiently healed to drink coffee again, I’ll be able to make blog posts from a seat at the cafe.)

All of you MacOS X users in the audience are encouraged to contribute your opinions and recommendations. Any programs you particularly like? Are there any tips for using this system you want to pass along?

I get by with a little help

Here are a couple of things that Paul and I received recently that made us laugh.

Yesterday’s mail brought, from our friend Bruce, a pair of bright orange “Get Out of Hell Free” cards, with a note that he thought we each could use one. I sent him email, asking, “Are they retroactive? And where do we redeem them?” His reply to the latter question: “Gee, there was supposed to be a kiosk on the way down…”

From our friend Cathryne, a few days ago, came a small volume entitled Pieces of Intelligence: The Existential Poetry of Donald H. Rumsfeld. This is a collection of blank verse from the Secretary of Defense. As I’ve posted some fine poetry recently, I’ll include a little of this, too. You may recognize some of these; Rumsfeld’s work is becoming part of the zeitgeist. The last one is a modern classic.

Needless to Say

Needless to say,

The president is correct.

Whatever it was he said.

–Feb. 28, 2003, Dept. of Defense briefing

Evasion (a haiku)

I’m working my way

Over to figuring out

How I won’t answer.

–Dec. 3, 2002, Dept. of Defense news briefing

The Unknown

As we know,

There are known knowns.

There are things we know we know.

We also know

There are known unknowns.

That is to say

We know there are some things

We do not know.

But there are also unknown unknowns,

The ones we don’t know we don’t know.

–Feb. 12, 2002, Dept. of Defense news briefing

Personally, I’m curious about the unknown knowns… the things we don’t know that we know… that’s probably the psychology student in me.

Four weeks

Four weeks after surgery, life has settled into a bit of a routine. I had a fair amount of energy this morning, so I brought Kimberly a latte in bed, and later made her a delicious breakfast. (Even if I can’t eat, I still enjoy cooking, and it makes me feel good to make sure she takes time to eat in the morning.) At various times throughout the day, I crushed pills, mixed them with water, and squirted them through my PEG tube. At other times, I hooked up a hose leading to a bag with “drinks” or “food”. (I amuse myself by imagining my meals, including many things I don’t get to eat on my sodium-restricted diet. So far my favorite lunches seem to be cheeseburgers and the Ginger Chicken Bowl from our neighborhood pan-asian restaraunt.) I did a little tidying up, I did some laundry, I watched a few movies on TV. I napped in between, with a cat curled up at my feet.

Considering that four weeks ago I was in the ICU after a day of having my head cut open, along with other Amazing Surgical Tricks, I’m actually astonished at how well I’m doing. Imagine, having progressed to a point where things are routine, even a little boring! Wow. Yeah, me! I’m making coffee for my sweetie. How cool is that? Pretty damn cool.

So, it’s gonna be a while yet before I’m where I want to be, in the end. And we’ve made the transition from crisis-survival mode to a slower, incremental mode that requires a mental shift I hadn’t realized at first. But it’s good. Really good. We’ve come a long way, and things are good, and I’m healing. Wow.

Almost-four-week follow-up

Today was Paul’s “one month” follow-up appointment with Dr. Futran. It was a little early – it will be four weeks tomorrow since Paul’s surgery – but Paul’s healing really well.

Dr. Futran hadn’t seen Paul for 2 1/2 weeks, and he commented both on how good Paul looks and on how much improvement there has been in his speech. Carol and Dr. Schwartz had seen Paul more recently… and commented on how good he looks.

Flap? Looking great. Tongue range of motion really good. Swelling coming down slowly, but definitely coming down. Check.

Neck incision? Healed so well as to need little comment. Check.

Skin graft? Some edges knitting into adjacent skin. At some edges, where graft overlaps native skin, overlapped edge has died, turned black. This is normal; dead skin will peel off. Small area in middle of graft is a little raw, but Drs. Futran and Schwartz think it will heal up fine. Paul doesn’t have to keep graft bandaged all the time now. Check.

Trach? So close to being healed that no bandage is needed. Check.

Swallowing? The speech pathologist has labeled Paul “not safe” for swallowing. However, Dr. Futran said that his feeling is that, as long as Paul’s able to swallow his own saliva, he can try swallowing other things… “but don’t choke yourself.” It should get easier as [insert what Paul wrote yesterday about swelling, nerves, yaddeh]. The speech pathologist Paul saw yesterday isn’t the one who usually works with the head and neck surgery patients; Carol will have her call us soon to discuss things. Check…

Assuming nothing comes up in the meantime, Paul’s next appointment at UWMC will be with the speech pathologist in 3 weeks, for more swallowing tests.

Um, three weeks? Three weeks??!!! Can one do a giddy dance of joy while hyperventilating from anxiety? It seems we’ve spent the past month at UWMC, and now we’re going to stay away for three whole weeks? Yikes… hooray… yikes… hooray…

Good news and neutral news

The good news is that today, when we went back to the hospital for a follow-up visit, I felt like a “real person” and not just a patient who’d been let out temporarily. I’m not sure what all went into this feeling: being clean-shaven, wearing regular jeans and a t-shirt, feeling stronger overall, reduced swelling so that I can move my head more normally, many little things.

The occasion for our visit was to have a “modified barium swallow” test. This was a procedure where the speech pathologist and radiologist watched on a fluoroscope as I swallowed small spoonfuls of radio-opaque barium solution. This enabled them to see what my various parts are doing when I swallow, and get an idea of what is working and what isn’t. Hence the neutral news: small amounts of what I was swallowing were going the “wrong way”, into my windpipe, so it isn’t safe for me to start swallowing yet. (I knew this already, but now we have it on high-tech film.) The docs were quite helpful about showing me the scans, which seemed quite informative to them, though to my untrained eye it was impossible to really tell anything.

Frustratingly, they weren’t able to really give me any advice except wait. There are tissues that are swollen, and nerves that need to re-establish, yaddeh-yaddeh. Apparently there are no secret swallowing exercises of the Tibetan Zen Masters that they can give me that might promote any of this happening faster. (My impatience probably would work against the whole Zen detachment thing anyway. Hmm.) I am buoyed by the thought that I seem to be healing pretty fast overall, so maybe I won’t have to wait as long as some hypothetical “average” patient. And it is only a short time since the surgery. But I am getting really bored of liquid food through a tube. Sigh.

So, that’s the message for today: I’m feeling better, and I’ve made a lot of progress. BUT, (and to me it feels like a big “but” right now) there is a LOT more that has to happen, and I just have to be patient, and take good care of myself, and wait. It’s not going to happen faster.

I guess it’s time to go distract myself with some TV. At least there’s a new West Wing tonight!


When Melanie and I graduated from high school, Helen gave each of us a book of poetry. Melanie’s gift from Helen was a volume of Yevgeny Yevtushenko’s poetry, a perfect gift from a lover of language to a sensitive young student of Russian. This poem, a portion of which my mother is including in her eulogy for Helen, contains some of Yevtushenko’s most quoted words. That they are well known and often repeated does not diminish their power… and the line about “books and bridges and painted canvas and machinery” seems particularly fitting for Helen, the artist and writer.


No people are uninteresting.

Their fate is like the chronicle of planets.

Nothing in them is not particular,

and planet is dissimilar from planet.

And if a man lived in obscurity

making his friends in that obscurity

obscurity is not uninteresting.

To each his world is private,

and in that world one excellent minute.

And in that world one tragic minute.

These are private.

In any man who dies there dies with him

his first snow and kiss and fight.

It goes with him.

They are left books and bridges

and painted canvas and machinery.

Whose fate is to survive.

But what has gone is also not nothing;

By the rule of the game something has gone.

Not people die but worlds die in them.

Whom we knew as faulty, the earth’s creatures.

Of whom, essentially, what did we know?

Brother of brother? Friend of friends?

Lover of lover?

We who knew our fathers

in everything, in nothing.

They persist. They cannot be brought back.

The secret worlds are not regenerated.

And every time again and again

I make my lament against destruction.

– Yevgeny Yevtushenko

Mundane milestones

I’ve been hoping to craft some profound entry that would adroitly crack the silence following Kimberly’s heartbreaking posts about Helen, help everyone know what to say, and somehow make it better. But I can’t.

Still, against the background of the news about Helen, and Kimberly’s sadness, there have been some positive developments over the last few days, though they seem fairly mundane. Maybe if I just report on those, it’ll be something.

Eating is better. We seem to have found the perfect dilution of SpaceFood with fluids, so that not only can my body accept it, it can do so rather quickly. I’m able to get through a “meal” in far less time than last week, which is good, since “eating” means sitting around being hooked up to a bag. We’ve also figured out a pretty good schedule of fluids, “meals”, and drug dosages that is working well. So, a situation that was feeling pretty desperate a while ago is settling down into a working routine. (I am looking forward to being able to really eat again, though. I miss the taste and feel of real food. I have a swallowing test scheduled for Wednesday, as an early step toward that goal.)

Sleeping is better. When I first came home from the hospital, Kimberly had a cold, so she slept in the guest room. I was sleeping in dribs and drabs, and frequently rearranging pillows and postures, while making all sorts of odd breathing, coughing and snorting sounds, so it wasn’t like sleeping with me would have been easy, anyway. So, another big milestone in the last few days has been the two of us sleeping in the same bed again. We’re both sleeping better, longer, and more comfortably, which has profound physical and emotional benefits.

(It also has had profound feline benefits. Sergei, my “buddy” cat, had been very stand-offish, and had not come very close since I got home from the hospital. The morning he saw that Kimberly had declared it safe to snuggle up to me again, he returned to his favorite spot, curled up on my chest, purring.)

My appearance is better. Not only is my swelling going down, my bruises are fading, and various wounds are healing fast. I did manage to shave the other day, so I’m back to a goatee, if a ragged and short one, with an odd, puffy chipmunk cheek out to one side. (But it does make Kimberly smile to see something that looks a bit more like my “normal” face.)

It’s pretty clear that I’m working on healing.. It seems like every “high-energy” day is followed by a day of groggy sleeping. Yesterday I was happily up, doing chores around the house, taking care of all my own feedings and meds. Today seems to have passed by in a flash, since I’ve been asleep for most of it. In fact, I’m about ready to go back to bed already. So I’ll wrap up.

Thank you to those of you who’ve written and called with your sympathies for Kimberly.

More tomorrow.


As in, my mood today has been dark. I’m finding it hard to believe that Helen is gone.

I don’t have much to say about today, except that we got through it. It had the usual small pleasures and annoyances, all somewhat muffled by an extra layer of sadness.

It feels particularly important to me today to thank you for being a part of Paul’s and my life, and for supporting and encouraging us through his illness. Hugs to all of you.