Kevin's Walk

sorry for the lack of updates

2011-08-21T02:10:00.002-04:00

It's been a while since I last wrote anything on this blog. Here's a quick and dirty update:

My mother's Honda Civic died on me back in June-- the transmission had had enough, I guess. I ended up selling the car to the guy who towed it: he's an Armenian who runs his own combination gas station, used car lot, and towing service. Nice guy. He gave me $2000 for the car, which is about what I'd been hoping for.

At my brother David's suggestion, I got myself a used Honda Fit from a local dealer; it's a 2008 model and runs quite well. Given my scarily long commute to work (90 miles, round trip, every day), I've already put over 4000 miles on the car, which had only 38,000 miles on it when I bought it. Well, "bought" isn't exactly the word: I'm financing the car through Capital One, and I've had to upgrade my insurance to full coverage, so it's more like the car bought me: I'm a slave to it. The Fit's not perfect, either: all of its tires need changing. I'm hoping this doesn't become a safety issue before I have the money to change everything. The last thing I need is to plow into a ditch at 80 miles an hour because of a popped tire.

My job has been good to me: I'm happy with my bosses and coworkers, and have gotten more or less used to the strange 3-on-1 tutoring format (three students and one teacher, with each student being of a different grade and working on a different subject). Most of the kids I teach are pretty good, and I've enjoyed an expanded summer schedule. Unfortunately, the job doesn't pay nearly as much as I need to be paid to cover my expenses, so I've been gunning for a new job at Manhattan GRE, a company that pays $100 an hour to employees who teach GRE prep. You can't work for MGRE, however, unless you're able to score at least a 730 on the Verbal and an 800 on the Quantitative. I took the GRE in July and scored 710 on each (along with-- to my delight-- a 5.5 out of 6 on the Analytical Writing section, which put me in the 94th percentile). Just to put my scores in perspective: a 710 Verbal is 98th percentile, but a 730 would be 99th. A 710 Quant is, alas, barely in the 80th percentile: even a perfect Quant score is 94th percentile. I guess most GRE test-takers are generally better at math than they are at language.

This coming Friday, August 26th, I'm taking the GRE again, and will try yet again three more times this year if I can: you're allowed one try per month, up to five times a year. In the meantime, since I can't spend months waiting for test results, I'm hanging out my own tutoring shingle. To that end, I've created a website called Time, Effort, and Focus; it's still a work in progress, but you can see the About page here. My hope is to make some extra money through private tutoring.

I also recently renewed my apartment rental contract. All of these things-- the car trouble, the job, the tutoring, the apartment, etc.-- they all point to the fact that I won't be going on my trans-American walk anytime soon, not unless one of my readers is a multimillionaire with several thousand dollars to spare! So stay tuned, but don't expect much walk-related blogging for the next few months. Until I get my financial house in order (and this is taking longer than expected), I won't be moving forward with the walk. At this point, I'd say I won't be walking until sometime in 2012, at the earliest. My finances come first. I'm sure you understand, and I thank you for your patience.

_

setbacks

2011-06-21T13:46:00.000-04:00

Sorry for the lack of updates here, but life's been stressful, especially over the past week: my car decided to die on me, so I'm currently in the process of acquiring a new (used) car, and am driving around my buddy's sedan while he and his family are on vacation in their SUV. Would love for the skies simply to rain $100 bills for about an hour or so; that would solve a lot of immediate problems! But this is the real world, so the solutions available to me are messy and arduous. More on this drama as it unfolds.

_

a good resource

2011-06-10T11:14:00.000-04:00

For those trying to stay current with new developments in brain cancer research, I'm happy to note that the news website Science Daily (sciencedaily.com) has a section devoted entirely to that very topic. I'll be bookmarking this.

_

over the fence

2011-06-04T20:02:00.000-04:00

Many thanks to old family friend Jin Kang for his $150 contribution to the cause. I was previously $50 under my goal of $800, and now I'm $100 over.

In the ensuing weeks and months, I'll be writing more about the progress toward establishing a 501(c)(3) nonprofit, but for now I just want to say thank you to all the people who have contributed money. Monetarily speaking, I can now successfully file for exemption status, but there are still a few things I need to do in terms of paperwork and administration (a 501[c][3] is supposed to have a board of directors!).

So stay tuned.

_

Marissa's miracle

2011-06-03T22:30:00.000-04:00

Marissa blogs about her recent experience at Houston's MD Anderson Cancer Center here. In a week or so, a followup MRI will be done, and the team will see where to go from there.

It's not irrational to hope that she's in for a long-- perhaps indefinite-- reprieve from the ravages of this monster. She's at a point where it's conceivable that she might be one of the lucky few who get to walk around essentially cancer-free for years and years. I do so hope that's the case.

_

$50 from the goal

2011-06-02T10:49:00.000-04:00

Many thanks to Maven, who very kindly mailed me a money order for $100. We're close. We're close to a point where I can fill out some paperwork and really get this 501(c)(3) thing rolling.

_

short week

2011-05-31T10:58:00.000-04:00

Last week was a short week for me, since I didn't have any classes to teach last Wednesday, but this week is also short because we were all off on Monday. Feels a bit unreal.

In other news: I'm still trying to figure out how best to market my speaking gigs. Perhaps the best thing to do is to hit up the local Korean community and start there, but I suspect that the primary audience for a talk about glioblastoma and the need for proactive patient advocacy will be found elsewhere. So as the marketers would ask: who's the target demographic? If you've visited the eBay listing, you know that I took a stab at what I thought the target market was: friends and families of GBM victims. But even though GBM is the most common of the various types of brain cancer, it's still fairly rare in terms of the entire US population. I can't possibly expect to gather those scattered folks together for a series of speaking engagements.

Maybe the focus should be more on Mom and the walk. Instead of aiming directly at affected families, I need to take the personal angle-- put a face on GBM by describing Mom and what we've gone through, then talk about the walk that I'm hoping to do. Up to now, I've been assuming that the approach should be to mention the walk only at the very end of the presentation: "Proceeds from tonight's talk will help fund the upcoming walk, and will be placed in the [future] 501(c)(3), etc."

In any event, I'm looking at another short week, which means tighter-than-usual finances.

_

I hope she's OK

2011-05-28T21:36:00.004-04:00

I find myself thinking a lot about Marissa Parks today. She went in for her first major brain surgery yesterday (Friday), and I'm hoping to hear from her father sometime this weekend. Because I know how draining this process is, I'll understand completely if he doesn't want to talk. I probably wouldn't want to talk, either.

Marissa's story hasn't followed the same path as my mother's. Normally, when it comes to GBM, debulking (i.e., the removal-- surgeons call it resection-- of the major part of the initial cancerous mass) occurs at the very beginning, very soon after it's been determined that the mass is in fact a glioblastoma. One reason for this is to relieve intracranial pressure; another is to get rid of as much of the cancer as possible. My mother's own path through treatment followed this standard pattern; in Marissa's case, however, it was determined that the location of her initial mass would make excision of the tumor difficult. Marissa went right into the standard one-two punch of radio- and chemotherapy, and there were, last I heard, some positive results from all that. Still, GBMs are persistent, and the latest MRIs showed evidence of neoplastic tissue (i.e., new cancerous growth). This turn of events, coupled with the fact that corticosteroids haven't been helping with the intracranial pressure, is what necessitates the current surgery. Luckily, Marissa chose MD Anderson. Smart lady.

I've never met Marissa or her parents. I've corresponded with her, briefly, and have read her blog, on those rare occasions when she sits still enough to update it. I've talked to Marissa's dad a couple times by phone, and have emailed with him quite a few times. The picture I have of Marissa is that she's a young, strong-willed, independent lady, bursting with life. She's a doer; sitting down to write updates for a blog cuts in on the time she'd rather be spending with friends, or fundraising, or just living life. I hope she has the chance to keep doing this. I hope she has years ahead of her. None of us knows when the Fates will snip the threads of our existence, so it's important to live in appreciation of every moment we have.

My heart goes out to Marissa's parents. I imagine their daughter is in the ICU, resting after her surgery, and looking as if she's just been in a fight. I know what it means to hold vigil over someone in a bed, hooked up to monitors and tubes; I know what it means to interpret every twitch of the recumbent person's form as if it were filled with meaning. I know how it feels when that person starts to wake up, when you squeeze her hand and she finally-- finally squeezes back. And I know what it means, after the person wakes up, to be flooded with those conflicting emotions: the angel on one shoulder that says It's going to be all right, now, and the demon on the other shoulder that whispers, Yes, but just for now. Just for now. Only for now.

Some of my readers know exactly what I'm talking about. It's hard to experience such a situation and to take something good from it. To my mind, the only good that comes out of such vigils is the keen awareness of the passage of every single moment, the drip and pulse and breath of life in all its harmony and rhythm.

For now, we wait.

I sincerely hope Marissa's OK.

UPDATE, Sunday, May 29, 2011, 10:29AM: Almost an hour ago, Marissa tweeted this:

happy :)

UPDATE 2, 5/29/11, 6:33PM: Marissa wrote me to say the surgeons got "100%" of what they were looking for. The fact that she's well enough to be writing messages (and using emoticons) is a great, great sign.

_

just another $150 to go

2011-05-27T12:18:00.000-04:00

Another $150, and I'll have the means to start this 501(c)(3) process in earnest. Maybe I need to sell more stuff on eBay...

_

official weigh-in

2011-05-23T09:30:00.001-04:00

As it turns out, I broke the rules for induction yesterday and the day before when I mindlessly gobbled some Costco-bought hummus. Today's weigh-in still counts as official, though; I feel I've done enough in doing nearly two weeks of practically carb-free living.

First, the news on how I look: I look exactly the same as I did two weeks ago. No change at all when I see myself in the mirror. Even if I had managed to lose over 20 pounds (which I haven't), I'd still look the same. Experience has shown me this every time I've attempted a diet: it takes a few decades of pounds before I can see a change (and feel it in my waistline). This time around, I need to hit the century mark before I can feel truly healthy. Getting down to 200 (from about 300, pre-Atkins) is the goal. It'll make hiking a lot easier, keep me more focused, alert, and energetic, and improve my life in all sorts of other ways.

But enough dithering. The results of the official weigh-in:

289.5 pounds (131.6 kg, 20.68 stone), down from a starting weight of 296.

That's my lowest weight in a while. Not much of a loss, given the previous two days' stumbling (I bought the hummus this past Saturday), and the gaffes I'd made early on in induction (e.g., eating too much, eating only at night-- the latter not being a gaffe so much as the result of my work schedule). So for two weeks on the Atkins Diet, I have almost 7 pounds of weight loss to show for it. I'm barely-- just barely-- in the 280s, and have another 80 pounds to go.

I don't plan on restarting induction, and I do plan to reintroduce carbs to my diet. But I've learned that I can live a low-carb existence without going crazy, so even though I won't be formally pursuing Atkins from this point forward, I'll be eating more moderately and keeping the carb levels down. I'm also going to start exercising again; this has traditionally been my most effective weight loss method (Atkins has never totally sat well with me; any diet that says "no fruit for two weeks!" is at least partly insane). So wish me luck. We're shifting gears.

_

you go, Marissa!

2011-05-21T01:39:00.003-04:00

Marissa Parks is celebrating her very own special day: Marissa Parks Day, officially May 21 in the great state of Georgia. I've written about Marissa before; she's a young lady in her mid-20s who was diagnosed with GBM a few months ago. She's chosen to live her life to the fullest extent possible, and from what I hear from her father, she's a bundle of energy, fiercely independent, and a woman with goals. One of them, at the moment, is for her to participate in an upcoming walk to raise awareness about brain cancer. Marissa and her dad are both amazing fundraisers and boosters; I could learn a thing or two from them.

Marissa has chosen to stick with the good docs at the MD Anderson Cancer Center in Houston, Texas. As she notes in her latest blog post, she'll be undergoing a second surgery-- it sounds as if she'll finally be having the "debulking" that was denied her at the outset. It's unclear whether this will be a partial or full debulking... then again, no surgery ever removes 100% of the cancerous tissue: GBM tumors tend to be "fuzzy" at the edges, which is why it's dangerous to try to remove them completely: a surgeon risks taking out functional brain tissue as well.

I've had exchanges with Marissa's intrepid father, Brad, on several occasions. For privacy's sake, I don't want to comment here on what we've said to each other over the phone and via email, but I think Marissa's lucky to have such a father: he's proactive, decisive, aggressively inquisitive, and very much in his daughter's corner. One thing Brad and I agree on is that no one knows when their time will be up. In that sense, cancer or not, we're all in the same boat. There's no harm in wanting to live as full a life as possible, and Marissa's doing just that. I admire her attitude, and her dad is very proud of her.

My hat is off to the whole Parks family, as well as to Marissa's wonderful friends, who provide her with so much support.

Happy Marissa Parks Day! (Someone needs to write a Wikipedia entry about you, M!)

_

official weigh-in

2011-05-16T12:46:00.001-04:00

After one week on the Atkins Diet, I've gone from 296 pounds to 291.3 pounds. That may simply be what folks colloquially refer to as "water weight," but at least it's something. As mentioned before, there seems to have been little or no ketosis (the strip did change color, ever so slightly, when I peed on it), but it may be that ketosis, for me, may take longer than it does for others.

I haven't started exercising yet, and don't plan to start until after the induction period is over. There ought to be more weight loss once I begin walking and lifting (the apartment complex has a gym that I haven't used even once since moving in). Keep those fingers and tentacles crossed.

_

stay tuned

2011-05-15T16:16:00.002-04:00

Upcoming posts in the "lessons learned" series include:

7. tents versus bivy sacks (and how not to lose your damn tent)
8. traffic, narrow road shoulders, and me
9. weight, conditioning, and knees
10. shoes, blisters, and weather
11. food, drink, peeing, and pooping while on the road
12. protection from the sun, wind, rain, and cold
13. whether REI is just for elites/snobs with money

_

little to no ketosis

2011-05-14T11:21:00.000-04:00

So I used my first ketone strip a few minutes ago, and the result isn't very promising: as far as I can tell, there's been little to no ketosis over the past five days. I also weighed myself, and noticed that I had gained weight in the past day or two: the scale said 295, a net loss of a single pound. This comes as a disappointment after what seemed to be a steady loss since Monday (OK, I admit I peeked and checked my weight earlier).

So what's been going wrong?

I know that my adherence to the diet has been scrupulous in terms of what foods to eat and what to avoid. There have been no sweets aside from those expensive Atkins bars and shakes (which are permissible on the diet, though not in great quantities). The proteins have all been of the permissible kind-- no processed meats or anything pre-sauced or pre-crusted. The vegetables have all been either leafy greens or crucifers like cauliflower and broccoli-- no carrots or tomatoes* or anything else verboten.

All I can think is that my eating schedule is a problem, and possibly the quantities I've been eating. The first night, Monday night, I sat down to two chicken breasts plus a pork rib-- all merely salted and peppered and then pan-fried-- plus a large load of broccoli and cauliflower. I was stuffed by the end of that meal, but the following morning I saw I had already lost a pound. The second night was eggs and broccoli soup; again, I woke up and discovered, to my delight, another one-pound loss. I didn't buy those Atkins bars and shakes until Wednesday, and never ate more than two bars per day (which, come to think of it, may be a violation of the rules for the induction process; it could be that the bars are there to replace meals, not act as between-meal snacks). On Wednesday night, I had ground beef done up burger-style, plus spinach. On Thursday, I had salmon and chorizo (I checked the chorizo ingredients list and nutrition facts before buying: only 1g of carbs per serving) along with my spinach. Yesterday, Friday, was shrimp plus the rest of my broccoli soup from earlier in the week.

But each night, I was eating until I was stuffed, and I also had hunks of Monterrey Jack cheese waiting for me during my non-meal hours (essentially, the hours between 11PM and bedtime, which is usually around 3:30AM).

It could be that a bad eating schedule, combined with the huge portion sizes, and possibly also the introduction of those Atkins shakes and bars, have contributed to a near-lack of ketosis. I may have to get stricter about portion control, and may also have to avoid the temptation of the Atkins products. The latter won't be hard to do: they don't taste very good, and they're far too expensive: imagine paying $7 for a four-pack of 11-ounce "chocolate" shakes. That's nearly two dollars for about two swallows of ersatz milkshake. Not worth it.

I'm doing induction for the full two-week period, and my "official" weigh-in for this week isn't until Monday morning, but right now, things aren't looking good. It may also be that my body reacts differently to Atkins than my brother's does; I vaguely remember this being the case the last time I tried Atkins, years ago. For me, the best results have typically come from huge amounts of exercise coupled with smaller portions. That's what thinned me out when I lived in Switzerland: all the hiking.

But we'll see. It's too early to jump ship. I can't do much about my eating schedule, as I mentioned before, but I can reduce portions, avoid the Atkins products, and keep eating those diet-friendly proteins and vegetables. As my brother pointed out, not everyone can see results after X amount of time; some of us just take longer.

*While allowed on Atkins, tomatoes can only be eaten in very small quantities.

_

meals

2011-05-11T13:20:00.000-04:00

After two days on Atkins (Monday and Tuesday), I can already feel something of an improvement: no pre-diabetic headaches or blurred vision, and while it's premature to say anything about this, I suspect that a very tiny bit of weight loss has already occurred. I don't want to fall into the psychological trap of daily weigh-ins, so I'll wait until next Monday to report an "official" weight.

Tonight, when I'm done with work, I need to buy some Atkins products-- shakes and the like-- as well as more vegetables and proteins. With the sweet tooth I have, I'm already craving chocolate. I'm also going to have to curb the amount I eat at night; the first night, I think I ate way too much. Here are the previous two nights' meals (remember: I don't eat before work, so my only meal of the day happens around 11PM):

Monday night: 2 chicken breasts, a couple chunks of pork (all seasoned with only salt and pepper, and fried up in a skillet); a steamed mix of broccoli and cauliflower, seasoned with salt, pepper, and a dusting of garlic powder, and fortified with a bit of butter.

Tuesday night: soup made from frozen broccoli and leftover spinach, with butter and cream cheese added for robustness, seasoned with salt, pepper, garlic, and a dash of paprika. For protein: scrambled eggs with cheddar cheese.

All of the above is very nice, but the sugar demon trapped inside my head is screaming that I need to eat six Lindt chocolate truffles right now.

_

no RSVPs

2011-05-10T22:30:00.000-04:00

Thus far, not a single student has RSVPed about the May 20 meeting. I'm beginning to think that my brothers and certain blog commenters are right: asking high schoolers to volunteer for this sort of work (i.e., helping me plan my upcoming walk) may be asking too much. I'd rather not believe that; most of the students I tutor are sharp, motivated, and creative. Some even have quite an activist bent. Why wouldn't that demographic want to help out with a project like this?

Part of the answer is, I suspect, timing: summer's coming soon, and students are thinking about vacation. Volunteering for a massive project now, when the year is effectively coming to an end, may simply feel like more work to the kids. I also heard from one student that his mother won't allow him to participate. This makes sense: many of those sharp, motivated, creative kids are being told by their parents to keep their focus on their studies; anything else is a mere diversion. (Tiger Mother, anyone? No drama class, no sports, and no musical instruments other than violin and piano!)

Unless someone pipes up this week-- a few someones would be better-- I may just scrap the May 20 meeting and try this again in September. Stay tuned.

_

Happy Buddha's Birthday!

2011-05-10T12:54:00.000-04:00

For those who celebrate Vesak (known in Korea by various names, such as Seokga Tanshin-il, or Bucheonim Oshin-nal, or Bultan-jeol), I wish you a Happy Buddha's Birthday! Seong-bul hashipshio! May you attain Buddhahood.

Dalma Daesa (Bodhidharma), First Patriarch of Zen Buddhism, is here to cheer us all on:

_

true start

2011-05-09T00:45:00.000-04:00

We've already had the false start. Now, at last, I stand at the threshold of the Atkins Diet two-week induction period. No more spare food to worry about, so the diet starts now. Wish me luck. Official weight at start time: 296 pounds. If, after two weeks, I don't see significant weight loss, I'll have to rethink my strategy.

_

lessons learned #6: traveling light

2011-05-07T02:41:00.000-04:00

During my 2008 walk, my knees were vulnerable for a number of reasons, all of them weight-related. First there was the problem of my own weight: I began my walk at about the same weight I am now: around 295 pounds. Next, there was the variable weight of my backpack, which hovered somewhere in the neighborhood of sixty pounds, but fluctuated depending on how much water I was carrying.

On the assumption that my calves, if chopped off and set on a scale, weigh somewhere in the neighborhood of 60 pounds together, I surmise that the pressure on my knees-- the weight pressing down on them from above-- was always around 300 pounds, i.e., about 150 pounds per knee. The situation was ripe for some sort of repetitive stress injury, especially on those days when I was walking more than fifteen miles.

Traveling light is important when you're hiking, but not always possible when you're hiking long distances. Although my walks were, for the most part, along roadways, distance is distance, and the stress of the miles adds up. There are various ways to travel light, and I'd like to spend the rest of this essay discussing mistakes I made during the 2008 walk, especially early on, and possible future strategies for the upcoming walk (which is looking more and more like something to do early next year).

First, let's talk about clothing. I had already hiked a long ways, from White Rock, British Columbia to Kent, Washington, when I met Rico Simpkins-- thinker, experienced hiker/traveler, REI employee, CouchSurfer, and all-around guru. He took a look at my pack and declared that I had brought along all the wrong clothing: there were sweatpants and sweatshirts made of heavy weave that simply shouldn't have been there. I ended up sending a lot of this stuff back home, but the pack contained other heavy items, like spiral-bound book-form maps to help me navigate the routes I was traveling. I had also thought about making money along the way by doing some art, so I had purchased and brought along a paint set. Other heavy items included heavy-duty tent stakes (which did, in fact, prove useful at several points along the walk), a set of large carabiners that I ended up using only once (and not for climbing, either), and a pair of boots. Many of these items got sent back to Virginia rather late in the walk, but as I reached the high desert, the pounds I had shed by sending back the heavy items were replaced by the extra water I had to carry.

I know better, now, than to pack so much stuff. The clothing angle is probably the easiest problem to deal with: avoid the heavier materials and stick with the lighter, hi-tech threads. I had done this with my pants, but not with my shirts and jackets. I also learned, while walking down the spine of Washington State, that it was fairly useless for me to wear a rain jacket: I sweated so much inside the the jacket that I still ended up soaked and cold. The remedy for that problem was and is an ancient one: keep yourself warm by continuing to walk. Save the jacket and other dry clothes for later, when you camp.

The map problem is also soluble: take along a smart phone and a decent power source, and you've got access to Google Maps. No more heavy paper maps that way.*

Footwear can be an issue; mountain hiking generally requires boots that can support your ankles, whereas road hiking-- which is generally devoid of tricky roots, boulders, and treacherously angled gravel paths-- requires only a decent pair of walking shoes. Rico took me to the REI flagship store in Seattle to hook me up with a pair of such shoes; I still have them.

Up to now, I haven't said much about actual camping gear, and that's because most of my gear is about as light as it can get. One thing I might change, however, is my tent: although it's a great little tent, it relies on stakes. This time around, I think I'm going to purchase a bivy sack. At two pounds, bivy sacks are slightly lighter than my current tent, and many of them require no stakes. The blow-away problem is worse for bivy sacks than it is for tents, but I've learned my lesson after my debacle in 2008.

Along with the weight-saving measures mentioned above, other measures are possible. The one I've been contemplating for a while is some sort of jury-rigged contraption that can be harnessed to me and pulled along while I walk. Commenters have suggested a pushcart, but I don't like the idea of walking without my hands free. The "wheeled travois," for lack of a better term, should ideally be collapsible, and light enough to store inside my backpack (or be strapped to its exterior) for those times when I either feel like backpacking or have to deal with wheel-unfriendly terrain.

The point of all of this is to minimize the pressure on my knees. Weight loss, the use of lightweight clothing and camping gear, the exclusion of superfluous travel items-- all of these measures will be essential if this new walk is to succeed.

*Some commenters have suggested that paper maps might not be bad a thing, but I recall one of my Army friends telling me that paper maps are a problem in anything but perfect weather. Once you factor in the cost and effort of laminating such maps (which would have to be cut down to manageably-sized panels), you begin to see how much of a burden they are.

thank you, Dr. Steve!

2011-05-06T17:04:00.003-04:00

My long-time friend, Dr. Steve, recently sent in his $100 contribution to the cause.

Many thanks, man.

_

many thanks to Anonymous

2011-05-05T11:42:00.002-04:00

My PayPal total now stands at $554.64, thanks to the latest contribution.

All glory, laud, and honor to Anonymous!

_

Happy Birthday, Mom

2011-05-04T09:00:00.002-04:00

She would have been 68 today, this little woman who meant so much to her family and friends. I'd be lying if I told you that the passage of more than sixteen months has blunted the pain of Mom's loss. I look at all these photos we have of her, and feel as if they had been taken just yesterday.

It was just yesterday-- when we all sat down to a Mother's Day meal at a super-expensive restaurant in northern Virginia, enjoying a rare extravagance; when we stood on the deck of The Maid of the Mist and got soaked by Niagara Falls; when we sat at a trestle table behind my French exchange parents' house in Carquefou, France, and enjoyed one of many family meals together; when we watched with pride as Mom spoke to a crowd in her capacity as Korean-American Women's Society president; when we listened to her tearful stories about the horrors she endured in the Korean War; when we were kids whom she helped get dressed for Halloween or school or church or an overnight with friends, running happily out of Mom's reach while she stood and smiled.

She would have been 68 today, and now all we have are these memories.

_

$40 an hour

2011-05-03T22:41:00.000-04:00

The cost to rent space at Woodson High School for the May 20 meeting is, according to the WTWHS activities director, $40 an hour. Yikes. I'm going to be filling out the form for the first meeting, but I honestly can't see myself meeting weekly and spending $80 per week to do so.

So the question is: does anyone live in a nice, big, sprawling home that might be usable by a motley group of planners (a group still of indeterminate size; no one has RSVP'ed me yet)? Or does anyone go to a house of worship in the Fairfax area-- one that would allow a group to meet for free? Don't be shy about leaving a comment or sending an email. We're going to need a regular meeting space.

_

my apologies to the recipients of the first fliers

2011-05-01T20:37:00.000-04:00

In reviewing the "Kevin's Walk" fliers I'd made, I found some embarrassing gaffes resulting from poor editing. Among them was an unintentionally funny line in which I said something like "I haven't fixed a date for our first meeting," immediately followed, on the very next line, by "the first meeting will be on May 20th." Whoops. I had arrived at a date while I was writing that part of the flier, but on the word processor, I had neglected to change all references to the lack of a meeting date.

The flier's been revised, and will be recopied and reissued to my colleagues to pass out to high school students. Sorry, everyone.

_

this is nuts

2011-04-30T22:24:00.002-04:00

The funds keep rolling in.

Stafford has sent a generous sum to my PayPal account. Humble thanks, man.

Not to be outdone by anyone, my buddy Tom, in Seoul like Stafford, has sent me $150 via PayPal, putting my total at $464.12. Again, without any fundraising action of my own, I now find myself more than halfway to my goal of $800 to be able to file for IRS exemption.

My thanks to both of you.

_

waiting to be used

2011-04-30T15:58:00.000-04:00

These are the ketone strips I'll be using to measure my progress while on Atkins. No, I will not be blogging their actual use. As you see, they're made to be peed upon.

_

that to which I say goodbye

2011-04-30T15:35:00.001-04:00

Here are some of things I must part with in order to do the Atkins Diet correctly:

First, we've got jjajang-myeon inspired by Hahna's recent post:

Next, we've got this bastardized Thai-esque chicken and shrimp concoction that would make any self-respecting Thai mad as hell:

Finally, there's the charoset I made:

I wipe away a tear.

_

false start

2011-04-30T14:56:00.001-04:00

I was supposed to start the two-week induction phase of the Atkins Diet this past Monday.

And I did.

But I lasted only one day.

Strangely, this wasn't about lack of resolve. My first day on the diet actually came as something of a relief from the previous carb-bingeing, and I would have been glad to continue dieting.

Here's the problem: I realized, upon waking on Tuesday morning, that I still had a fridge full of perishable items that wouldn't survive either two weeks in the fridge or an indefinite period in the freezer. Rather than throw everything out, I thought it best to deal with les restes in the best way I knew how.

I'm not talking about leftovers like half-empty jars of peanut butter or zip-topped bags of raisins. Those items can be closed and stored, and they'll still be fine after two weeks. No: I'm talking about food like the leftover jjajang-myeon I had, or the leftover Thai(-ish) chicken and shrimp I'd made, or the gallon of milk sitting innocently on the fridge's bottom shelf. Freezing jjajang-myeon sauce or fresh-made Thai(-style) pasta toppers would have led to the ruin of both, and leaving both in the fridge for two weeks would have led to an even darker scenario.

So I've spent the week since Tuesday eating these things up, and while that slaughter has been going on, I've remembered that May 4th and May 8th are important dates for our family: Mom's birthday and Mother's Day, respectively. Right now, it seems better to wait until after May 8 to start the two-week induction: I've got no special occasions to honor between May 8 and May 22. If induction proves effective, I'll continue with the next phase of the diet. That, or I'll reintroduce a moderate amount of carbs and start exercising in earnest (you're not supposed to exercise during induction).

The false start is still my fault, of course: I shouldn't have begun the diet without having been fully prepared. On May 9, I will be.

In other news: I'm beginning to think that a September start date for the cross-country walk is too soon. It's also bad timing, because unless I decide on a southern route across the country, I'll be walking right into the teeth of winter in the Plains states.

_

thanks, Staf!

2011-04-30T10:15:00.000-04:00

Many thanks to Stafford for his contribution to the cause! My PayPal account now reads $314.12.

_

setting things in motion

2011-04-29T15:40:00.000-04:00

As you know, I'm trying to recruit volunteers to help out with the upcoming walk's planning, fundraising, etc. One of my projects last weekend was the creation of a flier to distribute among high school students who regularly attend one of the tutoring centers where I work. That particular branch of my company is located across the street from W.T. Woodson High School in Fairfax, Virginia. Most of the high schoolers I tutor come from Woodson, in fact, and I'm hoping to rope some in.

Today, I contacted Woodson about the possibility of using one of their rooms for one or more meetings, and was transferred to the office of Mr. John Kenny, an activities director. He asked that I send him an email detailing my needs; I sent that off almost an hour ago, along with the MS Word version of the flier I've given to a few students. Because I sent it near the end of the school day, I don't expect to hear from him until early next week.

Meanwhile, I'm planning to impose-- gently-- on my colleagues at both of the branches where I teach, to ask them to distribute these fliers to their high schoolers (in fact, I've already approached two fellow teachers about this). I have no idea how many people might show up to the first meeting, which I've set for Friday, May 20, at 8PM, but I'm hoping that we have at least twenty.

Here's the text of the flier. Front side:

WOULD YOU LIKE TO VOLUNTEER? [Changed from "Thank you for reading this," which is on 40 copies of the first version of the flier.]

WHO: Kevin (C2 tutor, Centreville and Fairfax) and a group of committed volunteers—primarily high school students and any interested C2 faculty/staff

WHAT: Meeting to begin to discuss planning and preparation for a large-scale personal project: a walk across the Lower 48

WHEN: Friday evening, May 20, 2011, at about 8PM (details to follow)

WHERE: W.T. Woodson High School (specific room to be determined)

WHY: Cross-country walk on behalf of victims of glioblastoma multiforme (GBM), the most common and most aggressive form of brain cancer

HOW: The “how” of this project is precisely what we’ll be discussing. Topics for the first meeting (which might run anywhere from 1 to 2 hours) will include:

-deciding on a walking route (very likely the American Discovery Trail, or “ADT”)

-deciding on a start date for the walk (either September this year, or early next year)

-discussing local fundraising opportunities and strategies

-discussing PR/marketing to raise awareness about the walk along the walk’s route

Can we make this happen? Would you be interested in helping out? If so, please read the other side for more details and RSVP as soon as possible to the following email address: kevinswalk@gmail.com.

And now the flier's back page, which is much more detailed:

Greetings! Thank you for picking up this flyer, despite not knowing what it might be about. Long story short: I’m looking for volunteers who would be willing to help me with a massive personal project.

A bit of background:
On April 16, 2009, two days before I was to return to a cross-country walk that began in 2008 (I managed to walk about 600 miles as part of a personal exploration of American religious diversity), my mother exhibited symptoms of severe cognitive impairment. At first, we thought this might have been a stroke, and we took her to the ER. What we discovered, instead, was a significant mass on the surface of her left frontal lobe. This turned out to be glioblastoma multiforme (GBM), the same sort of brain cancer that eventually killed Senator Ted Kennedy. For patients over 60, the prognosis is grim. Most GBM victims die within 11-13 months of diagnosis. An exceedingly small number of people manage to defy the statistics and live longer than two years; a very small handful of people has managed to survive 10-15 years with no recurrence of GBM after treatment. Senator Kennedy survived fifteen months post-diagnosis—two months beyond the upper threshold. My mother, unfortunately, died nine months after her diagnosis—two months under the lower threshold. She passed away on January 6, 2010, at 8:03AM.

That was how 2010 began for me and my family: with the death of my mother. Over the next several months, I remained at my parents’ house to help my father complete a renovation project that began before Mom’s cancer, and which was put aside during her illness. I moved out to my own place in November, having gotten a job as a TOEFL essay rater for ETS (the same company that makes the dreaded SAT, AP, etc. exams). This job lasted only a few months due to the “low season” for TOEFL testers; I switched to C2 this past March, and have enjoyed making the acquaintance of so many bright students and fellow tutors.

What I’m doing now:
I’m hoping to return to my trans-American walk—the walk that ended after only 600 miles in the fall of 2008. This time, however, I plan to walk on behalf of all past, present, and future victims of GBM, in an effort to raise money and awareness for GBM research. At the moment, I’m somewhat torn as to the start time for the walk. For personal reasons, I’d prefer to begin it this coming September, but I’m beginning to think it would be more practical to begin it early next year.

What I need from you, if you’re willing:
A project of this scale can’t be realized without help from all corners. A lot has to be done: route planning, equipment prep, PR, lodging arrangements, research into terrain and weather, etc. I need a team of committed volunteers who might be willing to help me with these tasks. Walking across the country means walking somewhere in the neighborhood of 2,500 to over 4,000 miles, depending on the route. I’m seriously considering using the American Discovery Trail, which is the only officially walkable route across the mainland United States. The trail has advantages and disadvantages; these need to be considered before I can finalize my itinerary. Discussing these things as a group would be a great help to me. (NB: students who need to fulfill community service requirements could probably use this project to do so!)

How this all begins:
I teach at the Fairfax branch of C2 on Wednesdays. The Fairfax branch is right across the street from Woodson High School, and I’m going to speak with the high school’s main office about the possibility of reserving a classroom—preferably one that allows for multimedia presentations and chalkboard/white board work—for a group of us to meet semi-regularly. So here’s the question: would you be willing to help me with this crazy project? If you are, please RSVP to this invitation by emailing me at kevinswalk@gmail.com. If you’re a student (or, hey, even if you’re a colleague of mine), feel free to include your parents. Their help would be appreciated. I haven’t fixed a meeting date and time yet, but as I wrote, I’d like us to meet at Woodson High School. As for the meeting date, it would be in late May: Friday evening, May 20, probably around 8PM, to give most people time for dinner. If you email me with your RSVP, I’ll be able to email you back with more specific information as the meeting day nears.

High school seniors, who are graduating soon and will be prepping for college, will have to consider their summer schedules before RSVP-ing. So will everyone else (people travel during the summer), but in truth, the state of technology is such that we can all keep in touch from practically anywhere on the planet. In fact, I’m probably going to be making extensive use of my smart phone’s GPS and email/Skype/Twitter capabilities during the walk.

Pertinent websites and contact info:
My blog, Kevin’s Walk, was originally about the 2008 religious diversity walk. When I came back home, the blog switched gears to reflect the fact that I was recuperating from my knee injury and was writing about whatever came to mind—academic topics, sci-fi, books, and slices of life. In April of 2009, the blog shifted emphasis as I began to chronicle our family’s struggle with brain cancer. I did this in part to keep friends and relatives informed of what was going on with Mom, and in part because I felt it was my duty to remember this harrowing time in our lives. The blog is located at: http://kevinswalk.blogspot.com. I also maintain a Twitter feed at twitter.com/kevinswalk.

If you, Dear Reader, happen to be local to Fairfax County and would like to be a part of this effort, please think about attending the May 20 meeting and send me your RSVP (kevinswalk@gmail.com). I'll be creating a mailing list and emailing everyone with the particulars once I find out the specific room we'll be using.

Also note that there's a chance that Woodson might not be able to provide a meeting space for that evening. If that happens, we'll switch gears and meet at a fallback location in the same general area. I'm anticipating about 20 to 35 people showing up, but would be delighted to see a crowd of 100 or more... although that might mean changing venues. Anyway, please RSVP within the next two weeks so that I have a ballpark notion of how many attendees to expect. Thanks in advance!

_

..and now it's $300

2011-04-28T13:10:00.000-04:00

Many thanks to Bolt, who added another $100 to my PayPal funds. I'm floored. Funds now stand at $290.40 (PayPal shaves off a small percentage of every transaction; this is how they make money), putting me only $510 away from my initial goal of $800. I may be filing that IRS exemption paperwork sooner than expected.

Again, if you're within driving distance of DC and would like to engage me as a speaker on GBM-related patient advocacy, you can do so. Email me first to find out about available dates, then click over to the eBay ad and purchase an "event." Thanks in advance!

_

a second contributor!

2011-04-27T04:58:00.003-04:00

Many and humble thanks to friend and reader Brat for her $100 contribution to the cause! Man... I haven't even launched the speaking circuit yet, and I'm already getting donations. That's amazing.

_

lessons learned #5: hotels and motels as a last resort

2011-04-26T13:16:00.001-04:00

I had to stop my 2008 walk for three major reasons, all of which converged like a perfect storm. First, there was my injury, a stupid and preventable fall that occurred early in my walk, and which worsened over the next 300 or 400 miles. Second, as I tracked my own progress, I began to realize that I was going to hit the Rockies at exactly the worst time of year: my timing had been poor. Third, there was the money problem. It's not as though I was pissing away my funds on gambling and frippery; I was simply doing what any normal human being does: eating, resupplying, and sleeping. Unfortunately, when you're out on the road, these three activities cost a bit of money.

One of the ways in which I tried to stem the financial drainage was by using a service called CouchSurfing. The website, couchsurfing.com, is modeled after a dating website in that it tries to match a traveler with people who would be willing to host him for a time-- all for free. A traveler builds a profile on the site, talks about his interests and some of his travel experiences, notes his itinerary, then connects with people along his travel path who are also members of the site-- people with an empty couch on which a tired rover can spend a night or two before moving on. The subtext of all this is-- again, like a dating site-- social networking. You're crafting a web of friends and acquaintances, sharing experiences, seeing new sights and eating new meals.

CouchSurfing wasn't my own discovery; it was suggested to me by a number of people, and overall, it turned out to be a very good way to save money while traveling. The problem, though, is that most of the available couches are located in larger towns and cities. Once you're out in the boonies, CouchSurfing isn't nearly as easy.

What, then, are the alternatives?

One would be camping. I camped in quite a few state parks, especially while moving down the western spine of Washington State. None of these places was free, however, although they were all cheap alternatives to paid lodging, i.e., hotels and motels. I was afraid to camp on people's property: I saw signs that said "PRIVATE PROPERTY! KEEP OUT!" and even "PUBLIC PROPERTY! KEEP OUT!" We live in an era where just about every square inch of ground is spoken for, and unlike other America-crossers, I wasn't willing to risk arrest by plopping down just anywhere.

Well, that's not entirely true. I did spend two or three days camping out at Exit 151 along I-84 in Oregon. I'm pretty sure it was PUBLIC PROPERTY, but it was also obviously a campground for fishermen, and there was no management office to which to pay a camp fee. I simply plunked my tent down there and rested my knee in the heat (see here). I didn't feel so guilty about potentially illegal camping when I was out in the boonies.

The problem with using hotels and motels is that you're nickeled and dimed to death over the long haul: thirty dollars here, fifty dollars there... it quickly adds up, and without any donations rolling in on a regular basis, the whole enterprise quickly becomes unworkable.

My feeling now is that I'll need to change a few things about my walking strategy-- and my personal outlook-- if I plan to use only a minimum of money during this walk. First, I have to be more willing to knock on random doors, if need be, to ask for a place to set up my tent or bivy sac. In 2008, I walked right through most suburbs (and past many farms) without ever trying that approach, despite its having been suggested by several blog commenters. Second, I may need to rethink my absolutism when it comes to setting up camp in a potentially illegal area. I'm not talking about the boonies, here: I'm talking about PRIVATE PROPERTY and PUBLIC PROPERTY in urban or suburban areas. Third, I need to continue with the CouchSurfing (CS). That was one of the absolute best ways of moving across the country. CS opportunities may be few and far between should I decide to hike the American Discovery trail, but (1) I'll at least be able to camp along much of the trail, and (2) the ADT does, in fact, run through many towns and cities, which means CS won't be irrelevant.

Even with the above shift in thinking, parks remain something of an anomaly. There are, for example, some national parks that charge visitors who arrive by car, but leave hikers alone, whereas other parks charge a "hiker/biker fee" to human-powered travelers. I may not have much choice as to whether I have to pay.

When I step back and take a larger view of this enterprise, I don't see that I'll be able to design a walk in which I pay for nothing. That's not a realistic strategy. Even if I minimize costs, I'm going to have to buy crucial items for my survival-- food, season-appropriate outdoor clothing and equipment, etc. So I suppose we should add a fourth change to the other three: an income stream. Asking for donations can only work if one markets well and aggressively; I hope to do a better job of that this time. But along with donations, I'd like to be able to earn income of my own-- and that's where the speaking engagements come in. Right now, I've got them pegged to eBay/PayPal, where the funds can be transferred either to my bank account or to the future 501(c)(3) account. I have a feeling that, if the lecture circuit idea catches on, it's something I could pursue even after the walk is done.

As for those hotels and motels-- well, they're still a possibility, but only as an absolute last resort. I need to exhaust all non-paying and minimal-paying possibilities first.

_

many thanks! $100 closer!

2011-04-25T22:58:00.000-04:00

Many thanks to A Reader Who Shall Remain Nameless for plunking down $100 in my PayPal account, putting me that much closer to my goal of $800 to fill out the IRS exemption status paperwork. This means a lot.

(In case anyone is wondering where I'm getting this $800 figure from, see Wikipedia here, the section titled "Obtaining Status." Strangely, the IRS.gov site has a PowerPoint presentation on the subject, but it's a few years out of date and shows a figure of $700-something.)

_

now offering a GBM seminar in the DC-Metro area

2011-04-25T13:11:00.000-04:00

It's been a while since I've posted anything here. Sorry about that; it was a busy weekend.

One of my projects this past weekend was to create an eBay ad for a lecture circuit as part of my effort to (1) raise money for my trans-American walk, and (2) raise money for GBM research. First things first, though: I need $800 just to be able to file the paperwork for the 501(c)(3) nonprofit. This situation puts the cart before the horse-- I need to raise funds before I can raise funds-- but as they say, it takes money to make money.

So: if you're in driving distance of the DC area, have $300 on hand for a lecture fee (this can be collected), and you've got the facilities for a lecture, please visit this eBay entry, read it, and consider helping me out. The first three lectures will defray the cost of the IRS procedure; after that, the money will go into the 501(c)(3) nonprofit.

This, folks, is one of the reasons why I asked my bosses at my current job to give me three-day weekends. I have Fridays, Saturdays, and Sundays available for just this sort of work. If I could do three lectures in a single weekend, I'd leap the IRS obstacle right away, and whatever money I make after that could go straight into that fund.

_

imagine

2011-04-22T04:11:00.001-04:00

Imagine being able to detect brain cancer early.

_

coming soon

2011-04-20T11:48:00.000-04:00

More in the "lessons learned" series:

5. hotels/motels only as a last resort
6. clothing (and the whole notion of traveling light)
7. tents versus bivy sacks (and how not to lose your damn tent)
8. traffic, narrow road shoulders, and me
9. weight, conditioning, and knees
10. shoes, blisters, and weather
11. food, drink, peeing, and pooping while on the road
12. protection from the sun, wind, rain, and cold
13. whether REI is just for elites/snobs with money

and another one:

14. on money

_

not this week, but maybe next week

2011-04-18T12:32:00.000-04:00

Now that I know about the looming, $800 obstacle in my path to obtaining exemption status (itself a hurdle I need to jump to establish a 501(c)(3) nonprofit), I need to think about immediate ways to raise funds. To that end, I'm going to talk with some high school students at my places of work (I work at two different branches of a tutoring center) about fundraising ideas. I also hope to use the kids as resources for route-planning; as Stephanie at PNC Bank wisely noted, many kids need to fulfill community-service requirements. Alas, this week is spring break for many local counties, so it's the wrong time to go trolling for teen help. I'll try next week.

_

hiccup

2011-04-17T19:25:00.000-04:00

So I went to the IRS.gov website and sat through the little PowerPoint training program for people trying to establish a 501(c)(3) nonprofit. Guess what: I'm still going to have to shell out filing fees plus $800! I don't have that kind of money.

Looks as if I'll need to do a fundraiser before the fundraiser. To that end, I'm going to be slapping up an ad on eBay for speaking engagements at $300 a pop. I'll talk for an hour and have a 30-minute Q&A period. As I've noted elsewhere, lecturing isn't really teaching, but it's an efficient way to disseminate information. The topic of these talks will be primarily about how one's own family is the best patient advocate.

_

two years ago

2011-04-16T09:03:00.201-04:00

On this blog, I've never told the full story of what happened on the day my mother first showed signs of her brain cancer. This is that story, known to my brothers and my closest friends.

Two years ago, on April 16, 2009, almost to the very minute of this post's time stamp, I woke up and smelled something burning. I went upstairs to find a spotless kitchen, and my mother sitting quietly in her favorite corner of her new couch, watching Korean TV. My father was nowhere in sight.

I went to the kitchen sink and found the pan in which someone had tried and failed to cook breakfast. The pan was partly filled with water; its bottom was covered in the black char that can only happen when someone starts heating something on the stove, then turns away and forgets about it.

I called over to Mom to ask her what had happened. She got up from the couch and approached the kitchen with an open, childlike expression on her face. I asked her whether she had tried to cook breakfast, and she nodded, wide-eyed. The look on her face alarmed me: she wasn't herself at all. When I asked her what she had tried to cook, she said, "I tried to make some... some... some... chicken!" It had obviously been oatmeal, and my mind screamed aphasia. I asked Mom a series of questions-- the sort that a doctor might ask a patient with neurological difficulties: what day is it? Where are you? Who's the president of the United States? Mom's answers, and her continued demeanor, weren't reassuring.

I sat Mom back down on her couch and went to find Dad. He was in his den/computer room, typing away on his computer, seemingly oblivious to what was happening to his wife.

"Something's wrong with Mom," I said. Dad stopped typing.

"She was acting funny this morning," he observed quietly.

"She's aphasic and is acting almost as if she's having..." I couldn't say it.

"Could be a T.I.A.," Dad said. I asked what that was, even though I was pretty sure I knew the answer. "Transient ischemic attack. A mini-stroke," Dad whispered. And then he did something I'll never forget, because it was emblematic of how he handled the entire nine-month crisis: he leaned slightly toward his computer, bowed his head, and squeezed his eyes shut. I was witnessing denial. My father was blotting out reality.

"Shouldn't we do something?" I asked, feeling the urgency building. "Shouldn't we take her to the ER?"

My father-- a man with paramedical training-- said, "Nah, the ER won't take her. I'm going to set up an appointment with Dr. Reyff [not his real name]. His office isn't open yet. I have to wait two hours before I can call him."

"Why won't the ER take her if she's having a stroke?" I asked, incredulous.

"The ER won't take her," Dad said again, shaking his head. I was dumbfounded, and didn't know what to say to this. My father's shutdown was complete.

I went back downstairs and quickly emailed my brothers about the situation, including the fact that Dad wanted to wait for Dr. Reyff. My brother Sean called as he was rushing over to the parents' house; he and I agreed that waiting two hours for the doctor defied common sense: Mom needed to go to the ER now. My brother David came over as well, and it was the three of us-- with no help from Dad-- who persuaded Mom to stand up, slip on some slippers, and head out to the van so we could go to the ER.

We got Mom to Mount Vernon Hospital, discovered she had a mass on her frontal lobe, had her transferred from Mount Vernon to Fairfax Hospital, and left her there for her MRI. Some of these events are chronicled on this blog. What I didn't blog about, however, is what happened that night, after Dad and I got back home sometime after 1AM. I was furious at my father for his conduct throughout the day, and I let him have it.

"How could you insist on not taking her to the ER?" I demanded. It was the question that was foremost on my mind. "She could have been dying right there in front of you, and all you did was clean up the mess in the kitchen and go back to your computer! What the hell kind of paramedic can't tell when a patient needs urgent care? She never burns a meal! That didn't alert you that something was seriously wrong? You couldn't even recognize a cognitive problem like aphasia? All I ever had was a couple psych courses, and even I know what aphasia looks like!"

Dad's response was unbelievably lame: "I never took any psych courses, so how could I know that?" Was my father simply dodging responsibility, or was he genuinely that stupid?

My mother had often called Dad a "phony-baloney doctor." She may have meant it tenderly, as the sort of gibe a wife might use against her husband, but with her instinct for understanding people, she doubtless knew, even years earlier, that my father wasn't a competent EMT: he merely thought he was. On April 16, 2009, that incompetence could have gotten my mother killed.

Sean told me much later that, if I hadn't been home, Mom would have died on the couch. Maybe; maybe not. As it turned out, she hadn't had a stroke: her cognitive symptoms were the result of the edema arising from her brain tumor. Still, it's likely that my father-- who had revealed a shocking inability to step up and take care of his wife when she needed him most-- would have left my mother on that couch until she quietly slumped over. Had I not been there. Had I not been there to provide a sense of urgency.

My father's response to my furious questions wasn't I'm sorry, son; I fucked up. That, at least, would have been a man's response. Instead, all he did was deflect: "It's good that you can express yourself this way." Spoken with clinical detachment. The remark was so utterly irrelevant that all I could do was laugh bitterly.

"That's all you have to say? You think you're my therapist, now?" I was breathing hard, filled with a mixture of incredulity and fury. In a single day, I had lost almost all respect for my father, who had proved himself to be a coward in a crisis. The man who loved to brag about his EMT training, who so proudly wore a military uniform, had shown himself unable to rise to the occasion of his own wife's need. His role throughout the day had been little more than to fill out paperwork and to sit by Mom's side-- something the rest of us were already doing. He had shown not a single spark of initiative.

Our family had no idea what glioblastoma multiforme was when the day began, and if I recall correctly, we didn't even learn that term until a day or so later. But as the weeks rolled on, I was the one who did the research about the cancer; I was the one who guided the decision-making process as the cancer progressed; I was the one who cleaned up after my father's repeated mistakes in his care of my mother. What I saw on April 16 was that I was losing two parents, not one: my father had effectively left the building, passing off responsibility to his sons because of his own unwillingness to make important decisions or take decisive action.

What happened that day, and over the ensuing months, has had major repercussions for our family. And I haven't blogged about any of that until now.

Oh, yes: I was ignorant about strokes on the morning of April 16, 2009, but I researched them a day later, so now I can tell you this: if you think someone's having a stroke, then you've got about one hour to get that person to an ER. My father should have known that. All I had to do was use Google to find this out. Jesus Christ.

In case you're wondering: yes, many things went un-blogged during my mother's illness-- the truth about my father being the most conspicuous of those things. Friends advised me not to write about this at the time, but given all that's happened since my mother's death, I see no reason to keep this information to myself any longer.

ADDENDUM: So much credit goes to my brothers for keeping their wits that day. David was, ultimately, the one who got Mom to her feet: she had been resisting our efforts to persuade her to get in the car.

The tableau would have looked bizarre to an outsider: there was Mom, stubbornly curled up on her couch in the living room, with her three large sons standing over her. Every time one of us said, "Come on, Mom! We need to get to the hospital to check you out," she responded with an iron "No!" Her expression was a frightening combination of stony and desperate. When we shot back with a "Why?", Mom couldn't answer us-- more proof that something was dreadfully wrong. Mom wasn't the type to be at a loss for words, but that morning, all she could do was glare at us.

I remember briefly wondering whether she would struggle violently should we try to get her on her feet. David, who had more common sense than I did, didn't wait: once he saw that talking would be fruitless, he bent over Mom, slid his arms around her, and lifted her into a standing position. She didn't resist at all.

_

thanks, Stephanie!

2011-04-11T12:12:00.001-04:00

I met with Business Banking staffer Stephanie today, at my local PNC branch, and she did a great job of giving me the lowdown on how to proceed with the creation of a 501(c)(3) nonprofit organization. The first thing I need to do is file with the IRS for an "exception status," and once the IRS sends back its approval, I'll be meeting with Stephanie again to discuss the next steps in the process.

I also learned that my idea of involving kids in my project is a good one: Stephanie noted that many kids, especially high schoolers, often need to meet community service requirements of some sort or other (due to involvement in a service-oriented club, for example).

So for the moment, it's going to be a matter of downloading forms, filling them out, and waiting on tenterhooks for a response from the IRS. Wish me luck as we get the ball rolling.

_

501(c)(3) and subletting update

2011-04-09T23:04:00.000-04:00

It's taken some doing, but on Monday at 11:30AM, I'm going to be speaking with a business banker at the local branch of my bank, PNC, about the creation of a 501(c)(3) nonprofit organization. The consultation itself may not be free; this wasn't made clear when I arranged the appointment.

In other news, a perusal of my rental contract shows that it may in fact be possible for me to sublet my apartment. The language in the contract stipulates that there can be no more than one occupant, and that if, at any time, the occupant is not a family member, occupancy can only occur with permission from the rental office.

So I'll be talking to my local bank and to my rental office about how this all might be arranged. I want everything to be aboveboard-- no surprises, no sneakiness. I'm hopeful that we can work all this out.

(Meanwhile, my thanks to the Parks family for suggesting that I talk with my bank.)

_

what the ADP FAQ reveals

2011-04-09T02:49:00.000-04:00

I'm tempted to file this under "lessons learned." As it turns out, the American Discovery Trail is not bike-able along its entire length, as I found out while reading the FAQ for the ADT. Bikers must instead follow detours, and even then, there are portions of the ADT that are impassable by bike.

I also found out that the ADT is not clearly marked as the ADT along its entire length; each segment is managed by a different state, and not all states are on the same page. Complicating matters is the fact that the trail's routes occasionally shift due to maintenance or construction, and maps that were valid last year are no longer valid this year.

Most of these problems are minor annoyances, not major obstacles. The idea that a trail might not be clearly marked is, well, par for the course with most trails all over the world (unless you're in Switzerland, where all the trails are scrupulously marked). Still, it complicates matters now that I know that the ADT, despite having a "society" devoted to it, is actually a rather disjointed path.

That "society" bugs me, too. Far from disseminating free information about the ADT online, the ADT Society has taken the most current information about the trail and rendered it in paper map and book form. I wonder just how many maps and books I'll have to carry with me at any given time. I'd much rather use Google Maps (which employs satellite/GPS) to guide me than to carry around a few ounces (or pounds) of paper. (Of course, paper doesn't run out of battery power, but it can wear out, crumple, fall apart in rain, and do a bunch of other nifty disappearing acts.)

I checked to see whether the trail was marked on Google Earth. It's not, as far as I can tell. There may be random photos pegged to the maps on Google Earth, but they aren't readily searchable as part of the ADT. That's frustrating, to say the least, and the upshot is this: the only way for me to get detailed information about the ADT is to buy it from the ADT Society. Shucking fit. Doesn't seem fair. Then again, that's capitalism, right?

Speaking of capitalism, I think it may be possible for me to couple the ADT with the notion of paid speaking engagements. I'm thinking that I can tie this in with eBay, where people are allowed to sell services (no, you pervs, not those services): I can set my fee at, say, $300-$500 to speak at a local venue; the money I collect can go to mostly the 501(c)(3) nonprofit, with the remainder being used to help keep me on my journey.

Gears are turning.

_

subletting?

2011-04-08T18:49:00.000-04:00

My brother David thinks I should consider subletting my apartment, instead of raising money to cover the rent, as a way to lower the costs of the upcoming walk. I'm going to check into the legality of doing that, but I'm not hopeful.

_

on blisters

2011-04-08T12:11:00.000-04:00

I didn't include blisters in my "lessons learned" agenda because my feeling is that there isn't much to learn about them. The literature on blisters tends to be over-cautious, in my opinion; some authors act as if it's of utmost importance to treat them right away, to slap on that moleskin and save yourself from miles and hours of pain.

My conclusion, which I reached very early in my walk, is that blisters inevitably form in the early stages, especially if you're a big guy with a heavy pack, and all you really need to do is walk through them. Sure, they can hurt, but they don't really hurt that badly, and when you're sweating from carrying a 50- to 60-pound pack on your back, they aren't at the top of your list of worries. Pop them with something sterile and move on. Mother Nature, in the form of physics and repetitive movement, will take care of the rest.

This isn't to say that blisters are easy to ignore; when conditions are cold and rainy, blisters form readily, even on feet that have traveled hundreds of miles; they can become as annoying as the constant, subtle buzz of your next-door neighbor's alarm clock. But "not easy to ignore" isn't the same as "impossible to ignore," and the fact of the matter is that blisters will never hurt you enough to make you roll around in agony.

So when it comes to blisters, I say, "Man up!" Or "woman up!" --as the case may be. Trust me: you can walk right through them, and your feet will be the tougher for it.

_

interesting CNN link

2011-04-07T12:43:00.000-04:00

My brother David sent me a link to a CNN article about headaches and brain cancer. In the linked article are two videos, the second of which covers new vaccine treatment for GBM patients. This news isn't exactly new anymore, but it remains a promising development, and the video illustrates very clearly how the vaccine works.

_

stay tuned

2011-04-06T12:00:00.000-04:00

Coming soon: a post, lessons learned #5, about using hotels and motels only as a last resort.

_

lessons learned #4: the importance of water

2011-04-05T13:46:00.000-04:00

If you're out in the desert and you're a big guy who sweats a lot, water is no laughing matter. My 2008 walk started off easy: it took me from the US/Canada border down the cool, rainy, western spine of Washington State, where water was never an issue. My path then broke eastward from Portland, Oregon along the south side of the Columbia River to Umatilla and Irrigon, then hopped back up into Washington to end at Walla Walla. Right about the time I hit The Dalles, Oregon, the greenery abandoned me and the world became brown. I had left the Cascades behind and had entered the high desert, land of rocks and mountaintop windmill farms. Even from a slowpoke walker's perspective, the change was rather sudden.

Many of those days in the high desert saw temperatures over 90 degrees. On one particularly bad day, it was nearly 110 degrees out and I almost ran out of water about eight miles before Arlington, the town in which I had planned to stop. The sun's constant glare was withering, and I could feel myself slowing down. Rest breaks came more and more frequently, especially as my water supply dwindled (I used just about three gallons' worth), and in the end, a state policeman rolled up, told me I looked "bad," and gave me an eight-mile ride the rest of the way to Arlington. My knee was killing me; my mouth was dry by the time Officer O'Neill pulled up alongside me, and while I was still far from collapsing, I must have looked as if I were shambling like a zombie. My voice was husky, and I had begun to make bets with myself as to how many more miles I could do before needing to stop again. I ended up staying in Arlington for a week. That was probably the closest I had ever come to dying of thirst. Nature is an ass-kicker.

You've heard countless times that we humans beings are composed mostly of water. Evolutionarily speaking, our salty blood attests to the fact that we each carry a measure of the warm ocean, that cradle of life, inside us. This ocean needs to be maintained: lose too much water and salt through your sweat, and you may find yourself staring into the maw of heat exhaustion. On the day that Officer O'Neill showed up, I was edging dangerously close to that state. I still think I could have made the final eight miles on my own, but it would have been evening by the time I'd arrived, and my leg would have been useless.

So the lesson is obvious: in the desert, you've got no choice but to carry plenty of water, which means you've got no choice but to carry a lot of extra weight. I had a large CamelBak system with me, plus two large Nalgene bottles; my total capacity was close to three gallons. This turned out not to be enough for the twenty miles I walked in nearly 110-degree heat. Now imagine the same situation, but with no police officer pulling up, and no Columbia River close by if things got desperate.

The three primary practical issues related to water are carriage, storage, and potability. Carriage and storage are obviously related, but aren't exactly the same thing. Carriage is more a question of where you place your water physically on your person: do you hang it off your backpack? Do you hold a small bottle in your hands for those quick sips? Are you dragging your water behind you somehow? Basically: where are you putting all that water? Storage refers specifically to the containers used: will you be storing your water in milk jugs, camp canteens, Nalgene bottles, CamelBak drinking systems, or something else? These questions are more important than they may seem at first blush. When you're tired after ten or fifteen miles, regularly removing your 50- or 60-pound backpack to get at your water becomes a real logistical problem. Easy access while walking is important.

Potability, as a survival issue, subdivides into filtration and purification. As with carriage and storage, filtration and purification are related concepts, but not exactly the same. You always want to drink water that's been purified; it's not as important that water be completely filtered. A little grit won't harm you the way bacteria can. A good filter can take out a lot of that grit and can even work a little purification magic, but it won't necessarily kill every beastie that's in the water.

Which brings us back to storage. I made a discovery while walking along the high desert: if you filter some river water and put it in your translucent Nalgene bottles, you're creating a bacteria factory. The greenhouse effect ensures that the bacteria have plenty of light and warmth to go with their water, and in the space of an hour, the water in your bottles will be pretty much undrinkable. For me, this discovery took on a humorous cast: normally, when you're in a food-poisoning situation, one of the things you want to do is poop. On the day I realized that I was being attacked by my own water, I hadn't eaten for two or three days, so there was nothing for me to poop out. The consumption of some water didn't change that fact. It was a strange feeling, wanting to poop and yet having nothing to offer Mother Earth. I was, in fact, thankful that events went that way: I was able to recover from my queasiness once I had realized what was going on, all without suffering the consequences of diarrhea while on the road. That, friends, could have been disastrous.

The Katadyn filtration system that I had bought in Portland, Oregon served me well, as far as filtration goes. But as the above anecdote shows, purification is a whole different animal. It's probably not as much of an issue in the winter, when even the microorganisms are less active, but in situations of abundant light and warmth, something more than just filtration needs to be done. Two of the suggestions I received during that walk were (1) get a SteriPEN, and (2) buy purification tablets.

I'm going to avoid SteriPENs for reasons cited in a previous post: for your own safety, stay far away from any product about which no clearly positive opinion has emerged. SteriPENs are good in theory-- they emit UV rays that blast the genetic structure of microorganisms-- but customer and professional reviews note a few problems with them. First, there's the fact that the SteriPEN's effectiveness is limited if the water is even remotely cloudy. This has been a common complaint among hikers. Another is that the pen's battery isn't always the most reliable, which can mean flickering-- another crimp on effectiveness. Then, of course, there's the fact that the SteriPEN uses batteries at all, which brings us back to the power issue discussed in a previous post. Just how many different types of power source should I be lugging along with me?

Purification tablets (iodine and chlorine are the most popular) are probably the way I'll go. As Jason suggested in this long-ago comment, it's better to mix some Kool-Aid into the water (although this presents its own set of problems!) to blunt the foul taste of the purification process. I'll probably have some powdered flavoring on me for just that purpose. Purification tablets have been around forever; I used them when hiking in Switzerland years ago. They're cheap, they're light, and they don't need batteries. Coupled with good filtration, such tablets will get me through the walk.

On a somewhat sillier note, I'm also thinking of pinning a flag to my backpack that says something like, "NO RIDE NEEDED, BUT WATER WELCOME." Roadside charity would certainly save me from dipping too deeply into my own water supply. I'm also hoping that, if I build up enough of a following on Twitter, there'll be plenty of folks along the way who might zip out to my location and offer me an ice-cold bottle. God knows that, by Mile 15, water is something you think about constantly, desert conditions or no.

_

Monday weight check #1

2011-04-04T12:28:00.000-04:00

295.7 pounds.

I was over 300 pounds when I started my new job. The loss of less than 10 pounds really signifies nothing, and when you're as large as I am, even losing 20-30 pounds does little to change your appearance. But if I can manage to lose 60 or so pounds by September, that'll be great, and my knees will thank me. To that end, God help me, I'm considering taking up the dreaded Atkins diet, which worked wonders for my brother Sean. I tried Atkins once, long ago, for about a week, and was left miserable, but part of the problem was my ignorance of the bigger picture, i.e., the full palette of foods available to me despite the draconian restrictions. Considering my current carb intake, though, I think Atkins would do much to steer me away from adult onset diabetes.

More on this as we go.

_

portable food: a comprehensive review

2011-04-02T15:42:00.000-04:00

(reprinted from November 6, 2010)

As promised, here are my reviews of a whole slew of food products I purchased through my REI store credit in an effort to feed myself on a shoestring budget over the past two weeks.

All of these packets of freeze-dried food require one to pour in either boiling or cold water. Stir, let sit for a certain amount of time-- usually somewhere in the 9- to 13-minute range-- then pour out (more like scrape out) and eat. As you might imagine, given the sameness of the preparation process, all the food looks like mush. In other words, when you're evaluating these packets, throw out texture and presentation as judging criteria.

It should be noted, though, that some of the packets contain dry elements that are meant both to enhance flavor and to circumvent the texture problem; you pull these packets of dry ingredients out before you pour the hot water into the primary prep bag. While the presence of these extra packets is a thoughtful addition, what you usually end up with, once you pour the hot food into a bowl, is mush with powder on top. If you fail to eat the mush fast enough, you end up having mush with mush on top. Please keep that in mind as you read these reviews and ponder your purchases: in every case involving dried, pour-on-top ingredients, time is a factor, and slow eaters will be punished for their slowness.

Now... we begin.

Richmoor Natural High Three Berry Cobbler
REI Item# 6525850019
$5.00

Natural High Three Berry Cobbler rated a "so-so" when I tried it. The berry mush was a rich, dark red, and wasn't too bad, gustatorily speaking, but the visual experience of scraping the mush out of the zip-top bag evoked something primal, like the evisceration-by-spoon of a squirrel. Unfortunately, the addition of the chocolate crumble pretty much ruined the berries/viscera for me. I don't know who manufactures the chocolate for Natural High, but I suspect they're hunched, eyeless cave-dwelling beings bereft of taste buds and olfactory nerves, whose language consists of little more than sibilants and farting noises. The crumble does add a bit of crunch to the experience, but the gritty, near-flavorless chocolate is a true turn-off. My advice: if you have to buy this particular preparation, just consume the chocolate separately by stirring it into a mug of hot cocoa.

Richmoor Natural High Chocolate Fudge Mousse
REI Item# 5160010012
$4.25

The same angry cave dwellers that created the aforementioned chocolate crumble undoubtedly had a hand (or claw) in making this awful, mephitic goop. Have you ever watched Bear Grylls, on "Man versus Wild," squeezing a huge lump of elephant dung to get at the water inside it? Just as you'd never reach for dung unless you absolutely had to, you shouldn't reach for this chocolate mousse unless you're truly desperate. It comes with almond sprinkles, but the almonds are little more than cardboard. While not quite vomitous, I'd rate this packet "barely tolerable."

Richmoor Natural High Fudge Brownies
REI Item# 6888350011
$4.25

If I'm not mistaken, I wrote about these brownies before. The batter reacted well to the microwave, transmogrifying into a recognizable brownie in a bit less than 90 seconds. However, since we're dealing with Natural High's unnatural chocolate, the flavor was rather disappointing. I have no idea how the brownie mix would behave if cooked in a camp skillet or pot, per the packet's instructions; one can only hope that the heat of the campfire might induce some caramelization and work some alchemical magic on the brownie's taste. What I found bothersome about the instructions, though, was the assumption that a camper might be toting oil around with him. Or maybe my mistake is that I'm conflating camping and hiking. Plenty of campers bring all manner of weird items into the bush with them. My own mother, bless her, liked bringing along a hair dryer.

Of course, it's possible to tote oil safely, even as a hiker: anyone who's eaten ramen knows that some noodle packages come with tiny packets of oil inside them. I imagine that such packets, or similar ones, are available in bulk at outdoor recreation stores.

Mountain House Neapolitan Ice Cream
REI Item# 6368970015
$2.20

Ah, childhood memories. This stuff is freeze-dried ambrosia to me, but goddammit, it never lasts long enough. The Mountain House version tastes exactly like the astronaut ice cream I remember eating at the National Air and Space Museum. You could buy packets of ice cream at the museum's overpriced gift shop, and my folks often did.

Perhaps Mountain House offers a range of flavors, but all I saw was Neapolitan. I have nothing negative to say about this ice cream; each packet is 110 calories of pure, evanescent goodness. It's a great way to ponder impermanence; and with enough imagination, I'm sure you could incorporate this ice cream into some creative lovemaking. The way it reacts to moist body surfaces suggests a host of possibilities.

Backpacker's Pantry Cheesecake
REI Item# 6113800012
$4.90

Although it initially looks like a bowlful of elephant semen, the BP Cheesecake congeals within minutes (xanthan gum? agar agar? I need to look at the thickening agent) to an almost recognizably cheesecake-y consistency. A separate packet of graham cracker crumble is there for you to pour onto the dessert. I didn't mind the taste at first, but toward the end, the cheesecake began to taste cloyingly sweet. Like angels' brains.

Richmoor Natural High Honey Mustard Chicken
REI Item# 5100300010
$6.75

While not exactly awful, the Natural High Honey Mustard Chicken didn't have an obvious honey-mustard taste. The chicken was doubtless offended to be associated with this packet, which was edible, but uninspiring.

A word about dried meat reconstituted with boiling water: the simple fact is that, once the meat has been freeze-dried to the brink of mummification, there's no bringing it back. So don't expect your meat to have quite the same hearty, rib-sticking mouth feel that it used to have back when the muscle cells still contained water. Those cells have been raped and pillaged by the freeze-drying process; the addition of boiling water can, at best, produce a parody of the meat's original meatiness. I suspect that the makers of camp food are banking on the camper's being tired, hungry, and ready for a novel experience, since camp food isn't something you're supposed to eat every day (which is what I did, for almost two weeks, thanks to my REI store credits). For the rest of us, though, freeze-dried meat will always be a disappointment. Keep your expectations low, or stick with something more traditional, like beef jerky. We'll talk more about beef jerky later.

Mountain House Beef Stew - 4 Serving
REI Item# 7686880019
$10.80

Having just complained about the lameness of freeze-dried meat, I now turn around and praise Mountain House's Beef Stew. The packet says it serves four (i.e., two Kevins); it did indeed contain a lot of food, once the boiling water was added. I ate this packet over two or three days, and can confirm that the stew reheats well. What's more, the stew tastes like a stew, although in my opinion it lacked some oomph. I supplied some extra heat by ejaculating sriracha all over it.

Mountain House Raspberry Crumble
REI Item# 6101860010
$6.40

The Mountain House Raspberry Crumble-- essentially, Mountain House's version of the Natural High Three Berry Cobbler-- turned out to be excellent. As with the Natural High packet, there was a separate packet of Oreo crumble, but get this: it actually tasted like Oreos! Originally cringing at the thought of eating this dessert after the Natural High debacle, I was shocked to discover that this dessert was not merely edible-- it was tasty. Although dessert prep evoked the same squirrel-evisceration imagery as before, the smell and taste of the raspberry crumble more than made up for any aesthetic shortcomings. Highly recommended; very much worth your while.

Mountain House Spaghetti with Meat Sauce For Two
REI Item# 5101440013
$5.90

Despite its place on this list, the packet of Mountain House Spaghetti with Meat Sauce was the very last main meal I ate before I ran out of camp food. The freeze-dried beef was what you might expect, but in this case, the texture worked well with the rest of the sauce. The noodles were laughably stubby-- imagine spaghetti with an Irish curse-- but by the time the packet was ready to eat, I didn't care. My overall impression was that this was great camp spaghetti. The sauce was properly tomato-y; the meat's crumbly texture successfully simulated bits of ground beef; and the noodles themselves were decent by the standards of camp pasta. In all, an excellent meal. Highly recommended.

Richmoor Natural High Strawberry Granola with Milk
REI Item# 5101120011
$4.40

Did you ever see a B-grade Dolph Lundgren action movie called "I Come in Peace"? The movie was about Earth's encounter with a humanoid race of aliens; one alien was a cop, and the other was a murderer hooked on human brain chemicals. This dude spent a good part of the film grunting "I come in peace," then shooting flexible tubes into Earthlings' heads and sucking out their cerebrospinal fluid. Or something. My memory is fuzzy. Anyway, when the alien cop is shot in the gut by the bad guy, we see that his insides are composed of something milky-white and chunky, but of indeterminate texture. We never get a close look at those guts; it seems that these aliens vaporize when they die.

Natural High's Strawberry Granola with Milk reminded me of that alien's guts. The look of the food was white, chunky, and somehow wrong, and although the dried strawberries tasted fine when reconstituted, the granola itself tasted synthetic, as if it too had come from an alien world. In all, I found the meal just tolerable: edible, but not much more than that. I wouldn't eat it again if better options were available.

Richmoor Natural High Three Cheese Chicken Pasta
REI Item# 7952670011
$6.75

As you can see, I've taken a rather dim view of anything that comes from the Richmoor Natural High brand, especially when it comes to chocolate. Their Three Cheese Chicken Pasta, however, wasn't that bad. It wasn't great, either, but with the addition of some salt the meal was perfectly passable. I'd eat it again with no complaints. Recommended.

Mountain House Beef Stroganoff - 4 Serving
REI Item# 7686890018
$10.80

This was my only real disappointment from the Mountain House brand, but the reason for my disappointment was that, when I opened the package, I saw that it contained nothing but pasta: the stroganoff was completely missing. I'll charitably assume that this was some sort of assembly-line error, and not a deeper problem with the way Mountain House runs its operations.

I suppose I'll have to get back to you once I get hold of a proper package.

Backpacker's Pantry Pad See You with Chicken
REI Item# 7872520015
$9.50

I was curious to see whether this dish would taste anything close to Thai... and it didn't. If anything, the overall effect was rather off-putting. One problem with dried vegetables is that they all start to look the same. The itty-bitty chunks of broccoli were recognizable, but they forced me to question the food's Thai pedigree. The sauce that was supposed to bind everything together merely added to my gustatory confusion, and I ended up feeling a bit like Geena Davis in "The Fly," eating that first revolting bite of teleported steak, and not quite understanding what made it so cellularly perverse. Say "see you" to Backpacker's Pantry's Pad See You. It was a weird, salty mess.

Backpacker's Pantry Shepherd's Pie with Beef
REI Item# 8012290014
$9.50

Earlier, I said that we'd be talking a bit more about beef jerky. Well, this was the meal where the jerky came into play. Shepherd's pie is normally a layered dish-- kind of a bland version of moussaka. The camp version was-- as I noted at the very beginning of this blog post regarding all such food-- essentially mush. In this case, however, it was mush with chunks of beef jerky in it. Normally, I'd call the use of beef jerky a good thing, but the inclusion of jerky in the Backpacker's Pantry version of shepherd's pie made a salty preparation even saltier. I might even go as far as to question how safe such a dish would be to eat after a day of sweating and salt-depletion. The sudden spike in salt levels might kill a tired camper, for all I know.

The potatoes in the mix felt like standard, military-issue powdered potatoes. The vegetables-- whatever they were-- were forgettable at best. All in all, I wouldn't recommend this meal unless you're that salt-sucking vampire from "Star Trek."

Backpacker's Pantry Fettuccini Alfredo with Chicken
REI Item# 8012270016
$9.90

This meal didn't cause any love-sparks or powerful erections; it was pretty much unmemorable. By that, I mean it wasn't memorably bad or memorably good. It was mediocre-- the Salieri of camp food. Recommended only as filler or routine-breaker.

Mountain House Beef Teriyaki and Rice For Two
REI Item# 5101300019
$7.50

Mountain House did it again: this meal wowed me. While I can't say that it tasted much like a typical teriyaki preparation, it was quite delicious on its own terms. I took notes after every meal I ate, and for this one I simply wrote, "FANTASTIC!" It's true: it was one of the best examples of camp food I'd eaten, and I'd gladly eat it again.

Mountain House Chicken a la King Noodles For Two
REI Item# 5101350014
$7.50

Although this wasn't the last camp meal I ate, I'm glad it's last on the list, because it gets the highest praise. I don't know what chemicals they laced this food with, but the effect was positively addictive, and I'd gladly gorge myself on this meal until I exploded, Mr. Creosote-style. Your mileage may vary, of course, but for me, the Chicken à la King was a more-than-pleasant surprise. Egg noodles were used for the pasta, and that turned out to be a wise move, because they cooked quickly when boiling water was poured into the sealable pouch. The cream sauce's flavor was superb, and worked well with the texture of the reconstituted chicken. The vegetables made their presence known-- subtly, so as not to make you feel too self-conscious about eating something nutritious.

As you can tell from the above reviews, I now lean strongly toward the Mountain House brand, whether we're talking main meals or desserts. Both Natural High and Backpacker's Pantry were disappointments overall; given the choice, I'd avoid them in favor of buying nothing but Mountain House.

REI sells a wide range of food products from all three brands, so these reviews aren't the final word. It could be that I just happened to pick a bunch of duds from NH and BP; then again, since I was picking blind, without knowing anything about any of the brands, one could argue that my sampling was pretty random. So take these reviews for what they're worth, but since Mountain House's price ranges are exactly the same as the other two brands, I'd recommend MH as having the best value in terms of taste and unit cost.

_

lessons learned #3: the forgotten topic

2011-04-02T01:06:00.002-04:00

Earlier, I'd listed some of the topics I wanted to talk about, but I forgot to include a rather crucial one: power. So while it's on my mind, let's talk about it.

By "power," I mean electricity for various high- and low-tech devices on the route. Flashlights need power, for example, and so do smart phones. In fact, smart phones require a lot of power: battery technology hasn't had a chance to catch up with the amount of electricity a typical smart phone consumes. Even when I use my own Droid X in a very limited manner, I still need to charge it by the end of any given 24-hour period. It's greedier than my old BlackBerry was, and that's going to be a problem when I'm in the middle of a 25-mile schlep, out in the boonies.

During the 2008 walk, I brought along with me a solar-powered cell phone charger that I had purchased from REI. It proved to be worthless. There were days, especially in the high desert, where I had plenty of sun and plenty of time on the road to absorb crazy amounts of solar energy, but the device failed to perform. At best-- and this was after an entire day of charging-- the device produced only about a minute or two of power for the BlackBerry. I'm not blaming REI for this; REI sells a wide range of products from all sorts of manufacturers; most will be good, but some will inevitably be duds. This solar charger just happened to be one of the worst of the products I had bought. I don't know whether the charger itself was defective or whether solar chargers in general are simply not worth the purchase cost, but my intuition, based on my experience, is that such chargers are inherently problematic.

The first warning sign, I now know, is that the literature and commentary on solar chargers is wildly varied in its assessment of their performance. Some people love solar chargers; others hate them. I finally understand what that means: for your own safety, stay far away from any product about which no clearly positive opinion has emerged. Compare the user/expert comments about solar chargers to, say, comments about Nalgene water bottles, which are almost universally loved. (Later on, however, I'll talk about one of the problems with those bottles.)

Anyone who's listened even partially to the debates over solar power knows that solar energy has distinct disadvantages. One of them, perhaps the biggest disadvantage of them all, is the inconsistent availability of sunlight. All it takes is a few clouds to reduce the performance of a solar cell. Coupled with that problem is the second-biggest disadvantage: the solar cell itself is a delicate, finicky piece of technology. Tiny scratches and even a small amount of dust can cut down on a cell's ability to absorb sunlight. Add this to the first problem, and you've already got a product of dubious worth, especially out on the road.

But there's more. As I was walking, I also learned of a third disadvantage: angle of exposure. In the best of all possible worlds, a solar cell should absorb sunlight that's striking its surface at a clean 90-degree angle. This angle can't be guaranteed, however, when the cell is sitting atop your backpack, bouncing along while you walk. The sun itself prevents one from keeping an ideal angle of exposure, because its position in the sky is constantly changing. The likelihood of enjoying optimal angle of exposure while walking is practically zero.

Finally, there's the problem of energy storage: even as the solar energy's being absorbed, it's draining steadily out of the cell. By the time you flop down at the end of seven hours' walking and try to charge your cell phone, you aren't enjoying the benefit of every single possible watt: much of the electricity has disappeared while you were walking.

My view of solar cells for hiking, then, is quite negative. Unless you're willing to spend money on a ridiculously huge welcome mat of solar cells, I don't see how any modest-sized device can possibly power something like a Droid X, day after day, on the road.

So what are the alternatives if we assume that (1) I'll be needing and using a cell phone on a regular basis, and (2) I'll be walking long stretches without the benefit of an electric socket or a car charger?

My first thought is to go with a hand-cranked charger this time around. These types of chargers generally work for flashlights, but many (or even most) of the newer ones also work for cell phones. The problem, of course, is that they're very labor-intensive and provide only a few minutes' power after all that effort (see here, for example). In other words, hand-cranked chargers are really meant for emergencies, not as a day-by-day resource for a Droid X's electricity needs.

A better alternative, at least for a cell phone, might be a kinetic charger, i.e., a device that takes advantage of the body's natural motions to generate small but steady amounts of electricity over time. The concept has been incarnated various ways; one company, nPower, makes a peg-like device that's supposed to sit upright in the pocket of one's backpack; the walker's up-and-down motion is what generates power. The nPower PEG device ("PEG" stands for "personal energy generator") supposedly produces "about a minute of iPhone 3G talk time from 10 minutes of walking, or one minute of MP3 playback from one minute of walking." To me, that's plenty, especially after walking all day long.

My two concerns about kinetic chargers (see more charger ideas here) are their cost and their durability. Because so much of this tech is new and hasn't been embraced by the public at large, I can't imagine that it would be cheap. Sure enough, it turns out that the nPower PEG is a whopping $150. I also need to know how well such a device can endure variations in temperature and humidity, how well it can withstand being stored inside the confines of a backpack, or how well it might survive an accidental drop of 3 or 4 feet onto asphalt. Could I walk past a waterfall, get soaked, and still rely on the device? Could I use it in the rain, several days in a row? How well would it survive extreme cold, or 110 degrees in the high desert? These are all important questions. In principle, at least, kinetic chargers strike me as the way to go if I'm planning to take my smart phone with me (and why wouldn't I, given how useful it is?), but I have a ton of questions about them, practically speaking.

I'm not as concerned about the power needs of a flashlight. It was, in my experience last time around, very rare for me to be stumbling about at night with a flashlight. These days, there are so many tiny, economical alternatives to the traditional camper's flashlight that I have no worries about my possible nocturnal lighting needs. Still, when my thoughts turn back to that hand-cranked charger, I can't help thinking that a 2-in-one device would be a smarter purchase than a single-purpose device.

Meanwhile, the smart phone is a huge concern. The Droid X is a power sink, and I'm not sure a hand-cranked device, even if used three or four times a day during a 20- or 25-mile walk, would provide enough power for me to do much more than send brief tweets as opposed to blogging at any length. The nPower PEG, on the other hand, keeps your cell phone's battery "topped off" all day long, or so the claim goes. I'd love to road-test one of these devices before buying it. Maybe I should do some research into whether that's possible. If it is, you might be in for some very interesting blogging.

_

topics I'll be covering soon

2011-03-31T13:34:00.000-04:00

Along with the question of establishing a 501(c)(3) nonprofit, I'll be writing about the following lessons learned:

1. the importance of water (what works and doesn't work for filtration/sterilization, etc.)
2. hotels/motels only as a last resort
3. clothing (and the whole notion of traveling light)
4. tents versus bivy sacks (and how not to lose your damn tent)
5. traffic, narrow road shoulders, and me
6. weight, conditioning, and knees
7. shoes, blisters, and weather
8. food, drink, peeing, and pooping while on the road
9. protection from the sun, wind, rain, and cold
10. whether REI is just for elites/snobs with money

_

thank you, Charles!

2011-03-28T11:42:00.000-04:00

My buddy Charles gets his own special thank-you post because he and his wife braved the Byzantine Korean financial system in order to wire me my own cash. I had to send my banking materials to him via international post-- not the safest thing to do-- so that Charles could use my ATM card (useless to me here in the States) to extract my cash and wire the sum to me. He got a good exchange rate, and nearly $1500 will be plopping into my account later this week, minus my bank's stupid "receiving fee." That shouldn't amount to more than $10 or $15, though. As long as I have at least $1400 in there, I'll be a happy camper. That's $1400 more than I thought I had.

Thanks again, man.

_

lessons learned #2: planning

2011-03-27T16:09:00.001-04:00

A plan doesn't have to be long and complicated, but there needs to be one if one's project is to appear comprehensible to oneself and to others. I heard, once, about a Western lady who was a Buddhist nun, who decided to do her own transcontinental walk. Her plan: just walk, and trust that the world would provide. While simple in the extreme, such a plan at least had the virtue of coherence.

For those of us with more complex objectives in mind, our planning has to incorporate the same level of clear-eyed coherence. The more detailed the objective, the more rigorous the planning.

I mentioned, in my previous post, how I had approached route planning at the beginning of my walk. This approach ended up falling largely by the wayside, especially after Portland, but even before I had hit Portland, I found myself either staying at cheap motels, or camping, or staying at people's residences. The whole notion of moving from religious establishment to religious establishment had gone out the window by Mile 200. I consider that evidence of bad planning.

A plan that entails interactions with other people needs to consider the intricacies of human psychology. This might not be as true in a military situation, which operates according to very clear chains of command and has little tolerance for individual tastes and scruples, but for the rest of us civvies, working together is often a process that involves a great deal of empathy, perceptivity, patience, and effort-- especially those latter two qualities. My idea of appearing at a church doorstep and saying, "Hi! I'd like to stay here for a day or so, talk over religion with you, then have you find another religious establishment to send me to!" was probably doomed to failure by its very nature: I hadn't really taken human psychology into account. People aren't always at their best when they face the unexpected, and my foisting myself on the unprepared was, I think, a case of very poor judgment on my part.

Better, then, to alert people to what you're doing well in advance, so that they have time to prepare for you. For me, and for this second attempt at a trans-American walk, this means setting up a definite route and making doubly sure that the people who will help me out can reliably help me. If I intrude on their vacation time, for example, things might get hairy. If I choose flaky helpers who promise much but deliver little, that can also be problematic. Many people have generous intentions; fewer people have the strength of character to follow through with those intentions. Finding that smaller, more selective crowd is one of my tasks for this walk.

There's large-scale planning and there's small-scale planning. Both are important. For my walk, large-scale planning will mean fleshing out the overall route as I connect the dots between cities. Small-scale planning will have to happen in tandem with this; the details of how I get from A to B are just as important as the larger mission of determining the locations of A and B.

This is where social networking comes in. I didn't make the best use of Facebook when I was on it, but I refuse to return to it given its security problems and its host of completely irrelevant doodads. Almost everything that can be done on Facebook can be done on a blog: the posting of pictures, the writing of short or long updates, etc. Just about anything else can be done through Twitter, which I've come to respect as a very stripped-down way to send word out in real time. Both blogging and tweeting can be done on any current smart phone, and I've got one of those, baby.

Acquiring loyal followers on Twitter, then, is a major priority. Without that instantaneous (and wonderfully decentralized) grapevine, much that should happen won't happen. Route planning will occur more quickly with followers who can chime in with immediate feedback, and I can also use Twitter much more easily than I can use a blog to update my location (and, possibly, my survival needs, should I find myself out in the heat with no water, as happened once in the high desert in 2008).

Along with the gross and fine aspects of route planning, there's the question of where to stay. My cash reserves during the 2008 walk, which included quite a bit of donated money from friends and interested parties, were depleted rather quickly because I chose not to opt for illegal rest stops, e.g., sleeping on someone's farmland or in a wooded area of uncertain ownership. This is, partly, what led me to stop at so many motels along the way, especially during the middle 350 miles in 2008: I hadn't arranged to be housed at anyone's residence, and I didn't want to knock on doors and impose. Planning to stay at specific places, this time around, will alleviate much of that financial burden. If I'm not at someone's house (or sleeping in someone's van or chase car!), I'll be camping-- preferably legally.

I'm not too worried about certain other aspects of the walk, such as weather. By choosing a southerly route, I hope to avoid serious snow in the winter and dangerous phenomena like tornadoes. I learned, last time around, that one can trudge quite a long distance in even the most miserable of conditions (rain and cold are the worst when combined), and that blisters, when they occur, can simply be "walked through" without major incident. Your feet can and will toughen up when exposed to such constant pounding.

What does worry me, however, is my knees. I injured myself in a fall early in the 2008 walk, somewhere around Mile 200. That means I walked nearly 400 miles with a steadily worsening knee, and that injury, though largely healed, hasn't healed completely. Some of this problem can be alleviated by losing weight before I start the walk; some of it can be alleviated by having a chase car (or several chase cars, each for a different stretch of the walk), so that I don't need to wear a heavy backpack.* Another alternative would be to jury-rig a set of wheels so that my pack could be pulled along like a cart (with a hands-free harness so I could swing my arms) during those times when I didn't feel like wearing it on my shoulders and hips.

Before I drift into a full digression, though, let me pull back and say that I've learned the value and necessity of good, detailed planning. Stepping out into the wilderness on a wing and a prayer is possible, maybe even coherent, but once your mission acquires more specific parameters, the need for thorough, detailed planning imposes itself. There's no way around it, and no way to succeed without it.

*I remember one person asking why my backpack was so heavy. It's because I had so much stuff to carry-- not just clothing and camping equipment, but also maps and various paraphernalia. Above all, there was the water I needed: in the high desert, I was consuming easily more than a gallon a day, just to stay hydrated. As someone who sweats a lot, I know how easy it is to fall into a thirsty state.

_

how my Twitter feed should look

2011-03-27T14:33:00.000-04:00

The left edge of the black bar represents the left edge of my monitor:

Ideally, the above is what should greet you when you visit the Twitter feed for my walk blog. Every time I look up ways to design one's own Twitter background, I see over and over that "Twitter left-justifies background images." If that's the case, then there's no reason an image should be cut off on the left side by the left edge of one's monitor. Alas, I've had reports to the contrary from friends who've checked my Twitter feed, so I'm beginning to think that the Twitter gurus are either lying or deluded. It'd be nice if Twitter introduced scalable backgrounds; that would solve the problem right there.

_

lessons learned #1: focus

2011-03-27T03:05:00.000-04:00

So I'm thinking about restarting my trans-American walk. The first time around, my purpose was to explore American religious diversity, and to do so by visiting various houses of worship and meditation to talk with the folks about their attitudes toward religious diversity (see my ten religious questions). Instead of planning my route in advance, I had thought it would be interesting to visit a place, and then have that community send me onward to the next place. To my mind, this would have been a way to build relationships among disparate religious communities: for example, a Sikh gurdwara could have sent me off to a Buddhist temple, which could have sent me over to a Catholic church twenty miles away, which could have sent me to a synagogue the next town over, etc. In reality, though, this didn't happen, and part of the reason was that these communities didn't seem all that interested in connecting with each other. Getting people to make those connections sometimes felt a bit like pulling teeth. This may not have been their fault, though; I may have been using the wrong approach.

So the walk took a slow, meandering path as a result. I had also chosen to break eastward after I'd reached Portland, which meant stepping away from most of the religious diversity of the west coast. Some of my friends and helpers began to question why I had chosen the route I had, and where, exactly, the focus of my walk lay. If it was truly to explore religious diversity, they said, then shouldn't I have been following the west coast down through California, precisely to be able to meet all those Christians, Jews, Sikhs, Buddhists, Hindus, adherents of native American religion, etc.? By cutting suddenly eastward at Portland, Oregon (I had started in White Rock, British Columbia), and setting off into the high desert, wasn't I refocusing the walk on just getting across the country? It seemed to many that I hadn't really defined my project well enough, and that I was, in a sense, walking at cross-purposes to myself.

I think, in retrospect, that the criticisms had merit. The walk needed more focus. Although the exploration of religious diversity through the prism of my short list of questions wasn't a bad approach, I had paired that approach up with a very poor notion of route planning.

This time around, then, I want to make clear from the outset that this walk is to raise awareness about glioblastoma multiforme (GBM), and to raise funds for GBM research. I want a percentage of those funds to go directly to the Parks family, whose acquaintance I made a short while ago, and in whose lives I have become somewhat involved. The walk has other goals as well, but those goals have a more private relevance-- things like self-improvement, the restoration of a sense of purpose and meaning to my life, the feeling of accomplishing One Big Thing before I die, etc. Those private goals depend on the public act of walking across the country.

In my next post, I want to talk about the lessons I learned regarding planning.

_

renewal

2011-03-26T02:17:00.002-04:00

In the late 1970s, fantasy novelist Stephen R. Donaldson wrote the following dirge, sung by a character in a novel after that character had lost both of his parents:

Death reaps the beauty of the world--
bundles old crops to hasten new.
Be still, heart:
hold peace.
Growing is better than decay:
I hear the blade which severs life from life.
Be still, peace:
hold heart.
Death is passing on--
the making way of life and time for life.
Hate dying and killing, not death.
Be still, heart:
make no expostulation.
Hold peace and grief
and be still.

I come back to this poem now and again. It's been that way ever since Mom's death. Over a year has passed since she left us, and the wounds haven't healed. Part of the reason has to do with events that occurred after Mom died-- events that have prevented grief and healing from proceeding at their proper, natural pace. A member of our family chose to be selfish, and to lie for months about his selfish behavior, and about his cowardly betrayal of Mom's memory. The rest of us no longer speak to this family member, and he has, thus far, chosen to do nothing to repair the damage he's done, despite knowing what he needs to do to make amends. Forgiveness isn't the issue here: love and trust are. Forgiveness is easy, but if you can't trust someone, you can't love them, and never let anyone tell you differently. For now, I'll let you speculate as to who this family member is (many of you already know, since I've spoken with you or emailed you about this disaster); perhaps later on, much later on, I'll provide more details. Right now, what matters is that we're all moving on with our lives and coping as we can.

Mom died last January 6th. Later in 2010, I finished my part in the ongoing effort to renovate Mom's house, an effort she never saw come to fruition. Over the course of several months, I slowly but surely organized, packed up, and brought to the attic the enormous mountain of possessions that had lain in piles in our basement/family room. In the fall, I moved out of the northern Virginia area to a place that's greener and that offers a bit more peace and quiet-- something I felt I needed after Mom's death and the bitter aftermath. I got a job with ETS as a TOEFL essay rater, but after two decent months of work, the job petered out, and I found myself struggling to pay the rent. I've been helped by my brothers David and Sean, as well as by my best buddy Mike; all of them have contributed time and money to keep me afloat, and I can't thank them enough.

Just a couple weeks ago, I became a tutor at a special center that caters to young people from grade school through grad school. I was grateful to get the job, which promises me plenty of steady, stable work, unlike ETS. What I do now is also far less boring, and that's a plus: rating TOEFL essays was mind-numbing work.

So I'm doing what I can to get financially back on my feet. As always, I have a mountain of scholastic debt, not to mention bills that need paying, but I'm lucky not to have a single penny of credit card debt to my name.

To be sure, life after Mom hasn't merely been about righting the fiscal ship. I've also had the chance to make the acquaintance of the Parks family over the past month or so: Marissa Parks, a young and happy 24, was recently diagnosed with glioblastoma multiforme, the same type of brain cancer that took the lives of my mother and, more famously, Senator Ted Kennedy. I learned about Marissa and her GBM from the strangest of sources: an article at Cracked.com. The author of that humorous piece is a friend of Marissa's, and he linked to her blog. I left a long comment on her blog offering some advice about GBM treatment, and thus began a correspondence that has expanded to include Marissa's intrepid father, Brad. Marissa tells me she doesn't want pity, but her energy and optimism have instilled in me a desire to help her and her family out in some way, as well as to honor my mother's memory and to reach out to other victims of GBM. To that end, I've finally come around to the idea of returning to my trans-American walk. This time, though, the purpose won't be to explore American religious diversity: it'll be to raise consciousness about this deadly form of brain cancer, and to raise money for GBM research.

The upshot: Kevin's Walk is starting again, with the same goal of going from sea to shining sea. Over the coming days and weeks, I'll be writing more about what this means in terms of training, fundraising, route planning, and all the rest. Once more unto the breach, dear friends, once more!

ADDENDUM: Check out the Kevin's Walk Twitter feed here.

_

epilogue

2010-04-04T07:33:00.005-04:00

First Easter without Mom.

I went to sleep early on Saturday night, and woke up early this morning, around 5:30AM, so as to go perform my own little sunrise ceremony. I was counting on Fort Hunt Park being open by 6:30 (sunrise was closer to 6:50), and as it turned out, the park was quite open. Not only that, but as I drove past the entrance, I saw that one parking lot was already full of worshippers who had taken over the park's main pavilion-- even lighting its large stone hearth-- for an Easter sunrise service.

I wasn't interested in that service, or even in that parking lot. Instead, I drove down to one of the parking lots at which we used to stop so that Mom could get out and have a walk. We took Mom walking as often as we could during her illness; she'd had good days and bad days, depending on the state of her brain: too much intracranial edema meant that she would stumble and fall, leaving it up to us, usually two of us, to catch her in time.

Today's dawn was quiet. I got out of the car, stared around at the slowly lightening park, and began to walk the route we normally took with Mom. My hand reached out to grasp her now-invisible hand, and for a moment I was able to conjure Mom up, and feel what it was like to walk slowly across the asphalt with her at my side. There were brief tears, but this morning wasn't as bad as several weeks ago, when I came back to this park for the first time since Mom's death. On that day, I started walking and suddenly stopped: Mom's absence was heartbreakingly palpable. Instead of walking, I found myself leaning against the pillar of one of the smaller pavilions, sobbing at the cruel pain of memory, and it wasn't until I'd finished crying that I was able to pull myself together and walk our familiar path.

This morning, the tears were brief. I walked one path, drove the car around the perimeter road a bit, parked at our other traditional parking lot, and walked that second path as well. Together, the two paths were about three-quarters of a mile in length: the measure of a cancer-ridden life.

When I finished the second walk, I bypassed the car and sat myself on a picnic table sheltered by a pavilion, facing the rising sun. The pavilion's heavy wooden structure, and the way in which it framed the sun, evoked the ambience of a temple. I sat ch'am-seon (zazen) for a hundred slow breaths, and right as I expelled my hundredth breath, I suddenly heard the sound of singing from the Christian group across the way. I smiled; it was one of those happy coincidences that might lead the more superstitious among us to see the work of Providence.

I'm not a literal theist; haven't been for years. I don't believe in Providence, or a literal resurrection, or miracles, or the power of prayer. As far as I'm concerned, what happened to Mom was unfair, and made no ultimate sense. If there is a God, then Mom's brain cancer was evidence of God's cruelty, not his majesty or mercy. Her cancer, glioblastoma multiforme, has an unknown cause and no known cure: it arose through unfathomable but natural means, and Mom died a death that was the natural consequence of such a cancer's progression. No one recovers from GBM, and Mom's cancer was even more aggressive than most GBM cases are. We did what we could for nearly nine months, struggling to keep her as comfortable as possible, all the while knowing that she would eventually die. I spent some of that time hoping that she might be made well enough to live to 70; that was a vain hope. Some of Mom's friends and relatives persisted in denial, thinking that somehow she might benefit from a cure. I suppose it's only natural to cling to hope, but hope often clouds one's perception of reality.

We now begin the long trudge past a series of temporal milestones. Today marks our first Easter without Mom. Two days from now, Dad endures his first wedding anniversary without his wife; it would have been their 43rd. On May 4th, we face Mom's birthday; she would have been 67. By modern American standards, 67 is still young. My aunt in Texas, Mom's big sister and her senior by twelve years, has repeatedly lamented the injustice of Mom's passing away first. I'd rather that both Mom and my aunt lived forever, but I understand the spirit of my aunt's lament. Mom's death wasn't part of some ridiculous cosmic plan or "salvation history"; it simply happened, and it was senseless, tragic, and ignoble. And yes: it was unfair.

Combatting that senselessness, tragedy, and ignobility is our duty: the duty of those who remain. Mom would want to know that her three sons were living happy and fulfilling lives, that her husband was enjoying retirement and a measure of inner peace. It's up to us to be true to what Mom would have wanted, and her memory must now serve as our guide. I don't believe in souls or the afterlife, but I think there's a meaningful sense in which Mom continues to be with us. Her existence created ripples that affected everyone around her-- family, friends, coworkers, and relatives. Those ripples will continue outward, changing form, but always supplying a loving impetus to our nobler thoughts and actions.

In the meantime, though, Mom's loss is still fresh in our hearts. We miss her. Desperately.

A few minutes after Mom died on January 6, we each took a moment to say something to her before leaving the ICU. I don't know what Dad or my brothers said, but for my part, I told Mom that I loved her, and that she shouldn't worry: we'd be all right. It's up to us, now, not to let those words become a lie.

I love you, Mom. I love you.

_

unfinished business: blog not as dormant as predicted

2010-01-31T00:44:00.007-05:00

I had said, earlier, that the previous post was to be the next-to-last post for this blog, because I would be writing an epilogue and then leaving it at that. However, I began to realize that doing so would have meant breaking several promises. One promise, from early in this blog's existence, stands out: the promised transcription of several recorded dialogues that occurred during my 600-mile trek across the Pacific Northwest in 2008. For one reason or another, I've been unable to sit down for a straight block of time to work on transcription. During the first few months I was back home from the walk, the main reason was renovation: the house was being torn up and rebuilt, which made lengthy sessions on the computer difficult. From the spring of 2009 onward, I was more preoccupied by Mom's cancer than by any need to finish those transcriptions, and while I did write some lengthy blog posts during that time, they were all, in some way, about Mom.

But now I'm at a point that I foresaw during Mom's illness: Mom is gone and I suddenly find myself with plenty of free time. Here's the plan, then: I'll write my epilogue, but at the end of the epilogue, I'll append updates that pertain only to transcribed dialogues. The dialogues themselves will be backdated so as to be filed away in the murky depths of the blog archives, i.e., the epilogue will remain the blog's final post. For those who have no idea what I'm talking about, I strongly recommend that you peruse my sidebar (many folks who visit blogs never bother looking at sidebars, which is a shame). Near the top is a section titled "Interactions," which contains links to records of some of the encounters I had during my walk. Those exchanges ought to give you, Dear Reader, an idea of what's coming.

So the basic imperative remains: stop by every once in a while, and check to see whether I've added new links to my epilogue, once it's written. No definite timeline; I don't plan to box myself in with more promises I might not be able to keep.

As always: thank you.

_

slide shows

2010-01-25T08:34:00.007-05:00

As it turns out, Flickr isn't all that friendly if you're trying to make a huge slide show. The site only allows 200 photos to be visible if you have only the free account; to be able to see more photos, you have to pay for the upgrade to a "professional" account, at which point you have nearly unlimited storage capacity. This is no different from what Photobucket does, and since I already have Photobucket as my image upload service, I see no reason to start paying for an expanded Flickr service.

So instead of using Flickr, I'm using Photobucket as the base for all my slides. What follows is pretty much the same slide show that was running during the memorial reception. A few major differences, though:

1. It appears that I'm unable to control the time intervals at which the slides change.

2. This presentation contains a few extra pictures, but not a significant number. I'd guess that there are probably fewer than ten extra shots here.

3. The slides cannot be larger than 640 x 480 pixels.

4. As a result, all the slides you see have been drastically reduced in size.

5. Each Photobucket slide show has a limit of 100 slides, which means I've had to break up the "2000s" chapter into smaller sections. The final chapter, which covers Mom's cancer, originally had 103 slides in it. To meet the slide limit requirement, I simply subtracted 3 slides instead of creating yet another slide show.

6. The slide shows all appear below, and they will all run at the same time.

Without further ado, then--

Mom in the 1960s and 1970s:

Mom in the 1980s:

Mom in the 1990s:

Mom in the 2000s, before her cancer (3 slide shows due to the number of slides):

And finally, Mom during the cancer period (4/16/09 - 1/6/10):

All that remains for this blog is the epilogue-- my coda after writing for nine months about life at the end of Mom's life. I can't say when I'll write it. Maybe tomorrow, maybe six months from now, maybe 5 years from now. Whether the epilogue will be long or short, sentimental or humorous, prose or poetry-- I have no idea. So check back every now and again. You've come this far.

In the meantime, thanks for stopping by. I appreciate your readership.

_

reflections on last Saturday's memorial

2010-01-23T02:42:00.006-05:00

It's been a week since Mom's memorial service, which is, I suppose, a long enough delay. I've been meaning to write this entry since last Saturday, but haven't felt much desire to do anything, let alone write another post. The memorial marked a crescendo of sorts; the week before it was one long buildup to the ceremony itself. By "ceremony," I suppose I mean both the service and the reception that followed. Each event was, after all, part of a larger, ritualistic whole.

Our family had been to the church for a few hours the previous day (Friday, January 15) to consult with Pastor Jeri and Pastor Kim about the nitty-gritty details of the ceremony to come. Quite unsurprisingly, we discovered that we were in the best of hands: Jeri was ready to finalize and print out the church bulletins, and ladies were already bustling about the Christian Education Building, setting up the reception area. There was little to do on Friday but set up easels, position Mom's picture at the front of the sanctuary, drop the guest ledger and 3-ring binder in their respective places, and make sure the digital projector was working. My PowerPoint slide show wasn't finished on Friday afternoon; I would end up spending the entire night working on it. I had been laboring over it all week, but in accordance with Murphy's Law, work managed to pile up at the very end, despite the head start. In such cases, when I face a massive time crunch, sleep is the first thing to go. That's been true for me since college.

On Saturday, I arrived at church around 8:30AM after only an hour and a half of sleep. The slide show was finished, but I had sacrificed several dozen pictures from both the 1990s and the 2000s. Some of those pictures had been given to us by different friends-- folks who had probably hoped to see their contributions displayed in some form or other. Despite the omissions, quite a few of the digital pictures did make it into the slide presentation, but none were shown on the easels. Still, the slide show chapter devoted to the 1990s was severely truncated. I simply didn't have time to finish.

Pastor Jeri had already set up her computer for my use in the CE Building. All I had to do was plug in my thumb drive, access the slide show, then start it running. I had set the show to change pictures at five-second intervals, and had also programmed the entire sequence to loop over and over again. With well over 300 pictures in the tribute, the slide show was about 30 minutes long. I stood for a few minutes and watched images of Mom from the 1960s and 70s; when the show rolled into the 1980s, I left the CE Building and went back to the sanctuary, where there wasn't much for me to do.

Several other folks arrived early: my father and brothers, my Texan relatives, Mrs. Kopf-Perry and her two children, and Sean's friend William McDaniel, who was to play piano during the service. Mrs. Kopf-Perry performed the mike check while I moved to the back of the sanctuary, near the narthex; she sounded loud and clear to me. I hugged my cousins and uncle and several aunts; most of them had flown in from Texas on Friday, and our family, because we were so busy, hadn't even had the chance to see them when they arrived. At first, despite the huge number of empty pews, no one would sit down, but eventually people wandered forward and took their seats in the second and third rows, which had been reserved for family.

Time seemed, somehow, both to crawl and rush simultaneously: molasses and water. It wasn't long before the organist was up in the balcony, playing the prelude while people filed into the church. I'm not the type to constantly turn around to see who's there, but because I've been a member of this church since the fifth grade, I was conscious of the building's dimensions and acoustics, and could feel the sanctuary filling behind me while the clergy took their places in front of me. By 10AM, the church was nearly full.

The organist came down to the front and gave us an excellent rendition of two of the pieces we had chosen: "This is My Father's World" and "Clair de Lune." Music was, I think, one of the most memorable aspects of Mom's service.

Mom's service. The thought was still a strange one, even though I knew she was dead. All this was for Mom. There was her picture on the altar; there was her image, printed on every church bulletin. There were her friends and relatives-- all the people who loved her. You might counter that funerals are for the living; I agree, but such ceremonies have the dead as their reason for being. Mom's memorial. Mentally, I was shaking my head, even as the service rolled on.

The eulogies given by Mrs. Kopf-Perry, Mrs. Burns, and Mrs. Burns's daughter Beth, were touching tributes to my mother. All three speakers emphasized Mom's caring nature, her concern for others, and her kindness.

Then it was up to us guys-- three of us, not four-- to speak. Sean had already chosen to speak through his music, and he did so brilliantly throughout the service. The Babadjanian piece was a trio for piano, violin, and cello; we're thankful not just to Sean and his friend William, but also to Regino Madrid, who did a masterful job on violin. Later in the service, the Rachmaninoff piece was played only by Sean and William. It, too, was just the sort of music that Mom had loved.

I was the first family member to stand at the lectern. The walk up to the stage felt more as if I were floating; the service had taken on a surreal cast, not because I was nervous, but because-- after nine months of telling everyone around me to be realistic-- part of me still couldn't accept that I was about to deliver a eulogy for Mom. I managed to get through my notes without too much trouble, but I think I went way overtime: the original plan had been for me to speak only five minutes.

David went next. I remember being curious about what he would say, since none of us had shared our eulogy ideas with anyone else in the family. As it turned out, David delivered a eulogy that was both touching and humorous; it was a fitting tribute to Mom. Dad came next, and he, too, uttered words of love and laughter. I don't know how funerary speeches go in other cultures; I don't know whether levity is kosher outside of the modern Western context, but personally, I was glad that we three guys were each able to evoke our love for Mom in ways that provoked a smile and a chuckle. None of it was meant in disrespect. And Sean's music was the wordless paean that capped it all off.

I was thankful for Pastor Jeri's sermon, which emphasized familial love-- a theme that resonates with all human beings, but which would have caught the attention of the Koreans in attendance, for they all would have been thinking about the concept of hyo (Chn. hsiao, filial piety), a Chinese term whose meaning, in the Confucian context, refers to the bonds of love and duty that link the generations. I don't know whether people realize how much Jeri, in addition to her other duties, suffered alongside us, often coming at least once a week to see Mom wherever she was-- at home, in the ER, in the ICU. This was a feat of devotion and commitment unmatched by almost anyone else. As far as I'm concerned, Jeri can come in and out of our house whenever she likes, even if it's just to crash on our couch or in a spare bed for a few minutes before she moves on to the next thing on her never-ending to-do list. I can say, about many of the people who came to see Mom, that our family can never pay them back for their kindness, but this goes doubly for Pastor Jeri.

The service ended with "Arirang"-- surprise, surprise. But the music, however stereotypically Korean it might be, felt as right as breathing in this context. Our family crossed the distance between the sanctuary and the CE Building in an uneven line; some of us hung back while others of us marched right on over. We saw the round and rectangular tables, all now laden with food, and we took our places in the building's main hall, in front of the stage, waiting for the congregation to file in for the reception.

What followed was a blizzard of handshakes, hugs, and tears. Not my tears, nor those of my father or brothers: we smiled, we greeted, we talked; we ended up hearing the same questions and saying the same things over and over. People congratulated us on a beautiful service, complimented our speaking ability and our composure, asked us what we would be doing next. "Where do you go from here?" wasn't a question I felt ready to answer on that day; even now, a week later, I find it hard to peer into my own future. But I suppose it's natural for people to wonder what the next step is. If the moment of death is a threshold, then of course people want to know what lies on the other side-- not merely for the dead, but for those who survive the dead.

We were all impressed by the sheer number of people who came on Mom's behalf. Not only were Mom's Korean friends in attendance, but also a ton of friends and coworkers from her old job at the National Association of Letter Carriers. People we hadn't seen in years also came to see us, and along with my childhood friends, I had the chance to meet two blogging buddies (one of whom I'd met before-- apologies for not recognizing you right away, Jason!).

I don't know whether Mom would have been proud or mortified. She would never have wanted such fanfare for herself, but she was gregarious enough to enjoy a good party. Whether a memorial reception qualifies as "a good party" is debatable, but I saw folks talking and laughing and eating. Mom would have enjoyed that.

Somehow, our family-- Dad, my brothers, my aunts and my uncle, my cousins, and me-- all got through it. The line took about two hours to peter out, and when it finally did, I allowed myself to turn around and look up at the wall on which the slide show of Mom's life was playing. I watched each moment appear and fade: fleeting glimpses of a beautiful, smiling Mom throughout the decades. And even though my mind knew that existence is marked by impermanence, my heart tugged in a different direction, and keened for Mom. The images weren't her.

I finally cried then, and while the tears were streaming down my cheeks, Dad found me, and for the first time in nine months, we allowed each other a vision of our private pain. When we looked into each other's eyes, we saw the same sad embers burning there, the same desolation radiating from both our hearts. We were Mom's 24/7 caregivers, and now she was gone. Dad cried, too, his face showing more naked anguish than I had ever seen. We had, all of us in the family, experienced an amputation of the soul. My aunt was right: none of this was fair. I have no idea whether anyone saw me and my father gripping each other in a desperate hug; earlier on, many people in the reception line seemed to think that we guys had all "held it together" or "been stoic" during the service. Perhaps we had, but if those people were secretly thinking that we weren't outwardly sad enough, they were wrong. No structure, however large, could contain our grief-- not a church, not the entire world.

But the tears were, in their own small way, therapeutic. The reception was essentially over by 3PM, and a desultory cleanup operation was already under way when I silenced the slide show, collected my thumb drive, and helped folks to package food and recover unused plates, cups, and napkins. I spoke with my relatives a bit, and with my buddy Sam, who kindly hung around with his mother and sister. I can't remember much of what anyone said. Perhaps it's best just to remember the mood, which was one of fellowship and conviviality. A few more hugs, a few more words and waves and bows, and the day was over.

Our thanks go out to the people who came for the memorial service, to those who helped with all the preparation, and to those who helped with the cleanup. We also need to thank the Washington Korean Women's Society for their enormous financial donation to our family-- this being over and above the many visits, food deliveries, cards, and letters we've received from society members (many-- if not most-- of whom are Mom's personal friends), not to mention from everyone else.

My father is busy writing thank-you cards to everyone he can think of. He's a better man than I am; personally, I'm content to leave matters with this public thank-you. Dad's old-school, though, so many of you will be receiving a small card from him in the mail.

I haven't forgotten my promise to link to an online slide show featuring the pictures shown at the memorial. That is, in fact, my very next project: file size reduction and slide show assembly. After that, despite the fact that the house still needs renovation work, Dad and I are going to take time off to do our separate things. Dad says he wants to go to Texas to see our relatives there; I'm planning to find a spot where it's completely silent, and just hang there for a week or two. The quiet might do my troubled heart some good.

PS: To all the people who, during the reception, thanked me for having written this blog, I say: You're welcome. It served the practical purpose of keeping people informed, and also allowed me to vent my frustrations (at least partially; much remains unblogged, but can be found in private emails to various friends). Although I've been extremely disappointed in the number of people who couldn't be bothered to keep up with Mom's news, on January 16 I learned just how many people didn't fit that description. So even as I'm saying "You're welcome," I offer my humble thanks in return to all those dedicated readers-- especially the ones who have stuck with the blog from the beginning.

PPS: Along with the above-promised slide show, I'll be writing an epilogue of sorts. I can't say when that will happen, but when it does, it'll be this blog's final entry. Comments will remain open, though I'll still be vetting them before allowing them to see the light of day (as always, please see the comments policy for details).

A big, massive hug to you all.

_

glimpses of the memorial service

2010-01-19T04:04:00.002-05:00

For his birthday, we took Dad out for dinner at Maggiano's, one of the better Italian restaurant chains in the northern Virginia area. We all ended up stuffing ourselves silly, and most of us had trouble sleeping until near dawn. Maggiano's, with its enormous portions, provided just the sort of vulgar excess we needed, I think: a chance to introduce some levity and enjoyment into a time of tears and quiet suffering.

Dad's birthday was this past Sunday, January 17, the day after Mom's memorial service. I'd like to write about how that day went, but for the moment, I'm going to leave you some glimpses of the ceremony-- glimpses in the form of the church program and some notes about the scriptural choices I'd made on behalf of the family.

The memorial service was a massive group effort. Many people from the church community and from Mom's Korean society helped prepare the food and refreshments at the reception; I created the PowerPoint slide show and drafted the overall liturgy, basing it squarely on the memorial liturgy for another family in our church. That template had been provided by Pastor Jeri. Almost everyone in the family contributed music selections to our liturgy; Debussy's "Clair de Lune" was my choice, while Dad chose the hymns "This is My Father's World" and "I Danced in the Morning." We all agreed on "Arirang" for the postlude; Sean picked the hymn "In the Bleak Midwinter" and carefully chose his Babadjanian and Rachmaninoff pieces, which he knew Mom had loved. I designed the program's cover, but it was Pastor Jeri who took it upon herself to review and finalize the program's overall format. Flowers came to us from all corners, and during both the service and the reception that followed, we were touched to see so many attendees-- probably well over two hundred. The photos people saw at the reception had been primarily gathered by Dad, but many had also been mailed or emailed to us by various friends. I sorted the pictures into decades, but David and Dad were the ones who painstakingly assembled the large display panels of Mom's life.

So: for purposes of remembrance, I'm placing some memorial-related materials in this blog post for you to peruse. As always, comments are welcome.

We begin with a look at the program cover:

Below: page 1 of the program.

Here's a YouTube clip of the Debussy piece. I tried to find a clip of the Babadjanian piece online, but I'm not sure such a clip exists anywhere other than in iTunes, where it must be purchased. That's a shame: it's a beautiful piece.

Below is page 2 of the program.

Our thanks to Mrs. Kopf-Perry, Mrs. Burns, and Mrs. Burns's daughter Beth for sharing their thoughts about and feelings for Mom.

Here's a YouTube clip of the Rachmaninoff piece that Sean and William played.

Below is page 3 of the program. People are still welcome to make donations to the American Cancer Society in Mom's name.

Mom's bio (the death date should actually read January 6, 2010, as can be found in the bio's text):

Instead of preparing a formal speech for my eulogy, I simply cobbled together some notes and spoke from them:

Below is a compilation of the scriptural passages that we had chosen to be read during the memorial service. My comments, which I'd submitted to Pastor Jeri along with the draft of the liturgy, are in italics.

Isaiah 40:28-31
NB: This “wings of eagles” passage seems somehow apropos.

John 1:1-5^NRSV (to be read responsively)

In the beginning was the Word,
And the Word was with God, and the Word was God.
He was in the beginning with God.
All things came into being through him, and without him, not one thing came into being.
What has come into being in him was life,
And the life was the light of all people.
The light shines in the darkness,
And the darkness has not overcome it.

NB: I chose the above passage for what it says about Christ-nature, which unites creative love, light, and life. I also made, somewhat presumptuously, one verb tense change: the original NRSV text says, “...the darkness did not overcome it.” This struck me as a jarring clash of verb tenses.

Genesis 32:24-29^NRSV

NB: I chose this passage, in which Jacob wrestles with an angel or with God, because of what it says about the nature of the relationship between humanity and the divine. Wrestling isn’t quite the same notion as struggle; the latter seems to imply a bit more desperation, whereas wrestling can be contentious in a variety of ways-- not always unfriendly, either. Jacob’s contest is an example of a rough but friendly encounter: in the end, he is deliberately hurt by his adversary, but he receives a blessing and is confronted with mystery when his demand to hear the wrestler’s name is rebuffed.

Our own encounter with the Nameless can often be like that: painful, rewarding, and not easy to categorize. Also of note in this passage is Jacob’s chutzpah in asking for the blessing and for the wrestler’s name. I was always impressed by a passage in a book called Comparative Religious Ethics that notes that one of Judaism’s major contributions to world religion was chutzpah-- in this case, a sort of cosmic audacity in the face of the Ultimate [cf. Job for another example]. Koreans know all about chutzpah, and Mom was no different from the rest of her people in that regard. She spoke her mind, she wanted the best out of life for her family, and she wasn’t shy about being demanding. The difference between her and Jacob, though, is that she would never have asked a blessing for herself.

Psalm 23^KJV (read in unison)

Ecclesiastes 3:1-8^NRSV

Matthew 6:25-29, 34^NRSV

NB: This is the section of the Sermon on the Mount where Jesus evokes nature to remind us of the need for a present-oriented mindset. I chose this in part for personal reasons, not least of which is that I consider it a “bridge passage” in Christian-Buddhist dialogue. Buddhism is highly empirical and present-oriented; its focus is on mindfulness and compassion, which Buddhists see as two sides of the same coin. Nothing is stopping Christians from looking at life that way, either. Jesus is saying, “Look around you, and note how nature just is. That should be sufficient as you consider your troubles.”

I also chose this passage because of what it says about Mom’s heart. Even though she was often a consummate worrier, she also kept her head and responded to situations as they presented themselves. In Korean Zen, this is called “following your situation.” People who fail to follow their situation, who fail to look around them, get mired in all sorts of unnecessary, human-generated silliness-- problems caused by the desperate churning of their own minds. In her roles as Korean women’s society president and board member, Mom was often the calming influence on more heated personalities, putting out fires often caused by volatile combinations of pride and misunderstanding.

Jesus never explicitly said, “Just breathe, y’all,” but in asking us to consider the birds or the flowers, he was calling us to be silent and observant: to pay attention to the world, to turn outward, away from our own egos. The simple act of turning outward, of following our situation, is often enough to begin to introduce peace into the world. It’s the first step on the path of love. Which leads us to the second, and unsurprising, scripture selection...

1 Corinthians 13

I've published the above material here to offer a taste of what Mom's memorial service was like to those who weren't able to attend it. I also wanted to give those who did attend a chance to relive, for a moment, the ceremony they experienced-- and to afford them something of an insider's perspective re: rationales for scripture choices, eulogy notes, etc. I haven't asked Dad or David for permission to publish their eulogies, which is why they don't appear here as well.

_

joyeux anniversaire, Papa!

2010-01-17T15:01:00.003-05:00

The Ducoulombier family has sent along this e-card for my father on the occasion of his 68th birthday.

Top: Héloïse (second daughter, third child)
Middle: Timothé (second son, fourth child) and Véronique (Domi's wife)
Bottom: Dominique (my bud since 1986), Joséphine (eldest daughter, first child) and Augustin (first son, second child)

Got all that? There'll be a quiz later.

Our family would also like to thank the Higdon family and Mount Vernon Presbyterian church both for the birthday cake and for the round of "Happy Birthday" singing today. As one lady said to Dad, "Happy twenty-first!"

UPDATE: I was either half-asleep or at Maggiano's with Dad and my brothers when it happened, but it seems my buddy Mike gathered his family together and sang "Happy Birthday" into the phone for Dad. He heard the voice mail. Thanks, Mike and family.

_

a quick update

2010-01-16T22:40:00.002-05:00

The memorial service went about as well as could be expected. I'm operating on only an hour and a half of sleep right now, so I'll write more in detail tomorrow or Monday, when I'm more awake and alert. Tomorrow, as you'll recall, is Dad's birthday. Like Muhammad Ali, who is the exact same age (give or take a few hours), Dad will turn 68.

_

tomorrow

2010-01-15T22:45:00.002-05:00

Most or all of us guys will be at the church around 8AM tomorrow, even though the service starts at 10. I've heard that a Korean contingent will be arriving with finger food around 9:30 (so that they can set up in time for the reception, which will occur immediately after the memorial service). Members of the congregation are also bringing food, so in true Presbyterian fashion, no one will be going hungry.

We've been busy all day today. Sean practiced at home, went into DC to pick up the violinist, and had an 8:30PM rehearsal at the church. He won't be speaking; his music will speak for him. David's writing his eulogy, and has been out on various errands, including picking up his suit from the tailor's. I had to do that as well; the tailor told me today that he saw the news about Mom in a local Korean-language paper. Perhaps he'll show up at the memorial service tomorrow morning.

Dad and I are each toiling away-- Dad on his eulogy, and I on my albatross, the PowerPoint presentation. At some point, I'm probably going to have to throw in the towel and declare the job finished, whether it actually is or not. The amount of scanning we've done (I had a huge amount of help from David) is larger than any scanning task I've done before. It's been complicated by the fact that, at 300dpi, the images show dust motes all over them, which has forced me to spend long minutes using Photoshop to clean up every single picture. Minutes easily snowball into hours. On top of all that, I still haven't gotten beyond two paragraphs on my own eulogy, and am thinking that, since I'll be speaking for only five minutes, I might just carry some notes up to the lectern with me. I've started and deleted the eulogy text too many times to count, so perhaps this is a hint that I need to stop holding on to the notion of a scripted talk.

We're all tired and stressed, but we're chugging away. As you might imagine, we're just looking for Saturday to be over. I don't mean that as a slight to anyone-- certainly not to our relatives, who have all taken the trouble to come up from Texas for a single night and morning; nor to Mom's many friends, who will be attending the memorial service; nor to the hardworking people who have been helping us put the service together. I guess I'm just saying that we guys are all exhausted, sad, and just hoping for a bit of a breather.

The very next day, Sunday the 17th, is Dad's birthday. We'll likely be treating him to a nice meal somewhere in town; I can only imagine that, for Dad, occasions like birthdays and anniversaries shouldn't be celebrated alone. At the very least, we sons should do our best to offer him our presence and companionship. We did it for Mom; we can and should do it for Dad, too.

_

merci, mes enfants!

2010-01-15T22:28:00.002-05:00

My French brother Dominique sent me these lovely drawings from his kids, who created these for us after he told them about my family situation.

What amazing kids. Merci à vous tous, les enfants. Vous ne vous rendez peut-être pas compte combien votre geste m'a touché. Je suis ému.

_

Flickr photos: a hitch

2010-01-15T00:59:00.002-05:00

I had wanted to put photos up on Flickr before I made the PowerPoint slide presentation, but we've got a major problem: Flickr is free, but has a 100MB storage limit. Because it would have taken me far too long to reduce file sizes on the hundreds of files we have, I've been using un-reduced photos for the PowerPoint slide show. This shouldn't be a problem for what we're doing at the church, but with several gigabytes' worth of photos (and my thanks to those who mailed, emailed, or handed pictures to us), there's simply no way I can upload everything to Flickr without a massive campaign of file size reduction.

I'm sorry, but that can't happen in the time I have left before the memorial service, so please expect the Flickr slide show to occur a few days after Saturday.

Thanks and sorry.

_

quick update

2010-01-14T18:20:00.003-05:00

We'll be visiting the church tomorrow (Friday) afternoon at 2PM, armed with all manner of things to set up for the memorial service. Our thanks to the church staff and congregation for their past and future help in making this service go smoothly. A lot of people are working behind the scenes; I can't give them all credit here, but They Know Who They Are.

Thank you. And see you Saturday.

_

slowly but surely

2010-01-11T13:39:00.004-05:00

We're meeting with Pastor Jeri on Wednesday to discuss matters related to the upcoming memorial service. I've turned in (1) my draft of the liturgy (with plenty of red-font annotation), (2) my Photoshop design for the church program's front cover, (3) a two-page bio about Mom, and (4) a photo to go along with the bio. I've also been working on organizing all the photos of Mom for the pictorial tribute, and am at a point where I can begin my massive scanning project. This promises to take more than a day, even if I scan several pictures at once, and there's still a great deal of photo editing and manipulation to do (e.g., photos that have been scanned together will need to be cut into separate individual shots; labels will need to be applied to give credit to the people who have contributed pictures to the tribute; red-eye corrections need to be done, etc.).

I'm doing my best to respect my original idea: the division of the photos into decades (see the bottom of this post for details). However, I can't promise that all the photos truly belong to a given decade. As it turns out, we have a pile of un-stamped pictures showing clothing and hairstyles that could well be interpreted as era-straddling, making it hard to assign them a proper time period. I also have no plans to order the photos within each decade, i.e., a photo from 1999 might appear well before a photo from 1993, and a photo from September 2002 might appear before a photo from May 2002. I'm pretty sure that people viewing the tribute will forgive this peccadillo.

There's plenty more to do, but it's being done, slowly but surely. David has bought a suit and is having it tailored (I urgently need to do likewise). He's also going to help me arrange physical displays of Mom's photos for the lo-tech aspect of the photo tribute. Sean, who instead of speaking will be performing some of Mom's favorite classical pieces during the service, is working through the nitty-gritty of recruiting fellow instrumentalists. Along with all the funerary paperwork (and the regular paperwork that comes with having a house), Dad's doing some necessary grocery shopping today, and will be devoting himself to the cleaning of the house this entire week. He, David, and I also need to write our eulogies-- a task I hope to begin tonight.

Far from being a time of rest and meditation, things have been hectic here. And despite all the activity, the whole affair seems to feel hollow at its center, as if, somehow, Mom should be here to help us organize everything. Just the other day, I was struck by the weird feeling that we had left Mom stranded somewhere, and were supposed to pick her up. I guess this is an improvement over what I'd been feeling the day Mom died. On that day, I wondered why my heart was still beating. It didn't seem fair, somehow, for the world to continue without her.

See you Saturday, I hope.

_

odds and ends

2010-01-09T16:09:00.007-05:00

[Reminder: see this post for information about the memorial service for Mom. I'm assuming that, if you're savvy enough to be online, you're savvy enough to use MapQuest or Google Maps to get directions to the church. There's no reason to phone the church (or us) for directions. Both aforementioned websites are extremely easy to use. Thank you for understanding.]

Sometime around the end of January, this blog will go dormant, its purpose having been fulfilled. It had originally been about my walk across America, but it became a chronicle of something far more important: the decline and death of my mother due to glioblastoma multiforme, the most common and most aggressive form of brain cancer there is, and a cancer for which there still exists no cure.

There's very little left to write about as regards Mom's story; we stand in the aftermath of her passing. For now, our family's focus is on getting through the memorial service more or less in one piece, emotionally speaking. I did most of my sobbing on the day Mom died, and have cried a few times since then, but we are all, slowly but surely, picking ourselves up, dusting ourselves off, and doing our best to climb out of the wreckage of the past nine months.

Nine months. The time it takes to gestate a baby. It's still hard to believe that Mom is gone, but there we are-- those are the facts. Mom stepped through one door, and soon we'll step through another: the gateway to the rest of our lives. Here's hoping for brighter horizons.

You may have noted that I haven't described the events of Wednesday, the day Mom passed away. That was a deliberate choice. I did, in fact, tearfully type out a detailed report of Mom's death a day later; that part of the story might appear in the book version of this sad tale, but for now, I'm keeping it private. You, Dear Reader, don't really need to know what I saw and felt that day. Not yet, anyway.

Mom's been gone a little more than three days. Dad's been on the phone with various people, and today he received a visit from the funeral home providing cremation services. I've been working on several things at once: the format for the memorial service liturgy, Mom's bio for the church bulletin, her eulogy, and the biggest project of all: the compilation and finalization of a pictorial tribute to Mom. I'm hoping to send Pastor Jeri a draft of the liturgy format tonight; I also want to send her the finished bio, if possible. As Dad reminded me, we've got a lot of housecleaning to do since we're sure to have guests over the weekend. Relatives will be flying in from Texas; I'm not sure how many (if any) will be staying at our house, and how many will be rooming with our relatives in the area, or at local hotels. David and Sean are already sleeping at our house, but we're all willing to give up beds for house guests. To be discussed, I imagine.

It's been a bright, sunny day. Another day without Mom. I feel no self-pity about my own situation-- no sense of "woe is me." Instead I'm sad, profoundly sad, that Mom doesn't have the chance to see today's sun, or enjoy the way Sean's dog Maqz has been bounding happily around the house. I suppose this empty feeling will be with us for a while.

Ah, yes, before I forget: once the pictorial tribute is done (which should happen in the next few days), it will first appear on Flickr.com. This blog will provide a link to it.

_

2010-01-07T08:10:00.002-05:00

(Reminder: please read the previous post for information about the memorial service two Saturdays from now, on January 16.)

_

memorial service and reception

2010-01-07T02:00:00.003-05:00

Those interested in making the pilgrimage to attend the memorial service for Mom should be advised that we've fixed a date and time:

10AM on Saturday, January 16, 2010

Location:

Mount Vernon Presbyterian Church (MVPC)
2001 Sherwood Hall Lane
Alexandria, VA 22306

There will be a reception afterward in the Christian Education Building, also located on the church grounds. Whether you live nearby or far away, you are all invited to attend. Pastor Jeri says that the MVPC phone tree will be activated to alert people that they are, if they wish, free to bring hors d'oeuvre-style food for the reception. I told her that I would do my part to advertise the memorial and reception to this blog's readership.

If you're an online friend whom I've never met face-to-face (and that would be most of you), perhaps we'll meet each other there. Please don't feel I'm pushing you to come, though: it's going to be an awkward day on which to meet for the first time, and you may live far enough away that travel time and expenses might be prohibitive. So if attending such an event makes you uncomfortable for any reason, I understand. I'm sure we'll still be in touch via email.

Our family thanks you in advance for attending the memorial service, and to all those who have sent condolences and photos of Mom: you have our gratitude.

_

before I curl up into a ball

2010-01-06T10:32:00.002-05:00

At least for the next little while, the world has ended. I don't feel like sharing much at the moment, but I'll say this: Sean, Dad, and I were there in time to witness Mom's passing. Her heart stopped beating, and just to be sure she was comfortable, a tech added morphine to her line. She passed away, her chest still moving from the ventilator. David arrived just after she had gone.

Mom died of her own accord; no extubation was necessary. I don't attribute any volition to her timing-- as if she had somehow chosen her moment-- though I suppose it's romantic to think that she died on her own terms. That's fine with me. And who knows? Maybe it's the truth. Personally, I think she was already gone, so this was only a matter of time.

Rest in peace, Mom.

_

She's gone.

2010-01-06T08:39:00.000-05:00

Time of death: 8:03AM.

_
Sent via BlackBerry by AT&T

contrary to the very end

2010-01-06T06:30:00.002-05:00

The hospital just called us at 6:18AM. Mom's blood pressure is dropping rapidly; Dr. Henry, currently on duty, says she may have a few hours at most.

So we're on our way over to say goodbye.

To the very end, Mom and her illness defy prediction.

_

Mom's final full day

2010-01-06T04:31:00.005-05:00

We're over four hours into Mom's final full day on earth. Perhaps I'm reckoning that wrongly: as I mentioned before, I think Mom checked out weeks ago, in the early morning on December 22. Wednesday is, at the very least, her body's last full day among us. We spoke with a doctor, a chaplain, and a social worker, and have all agreed that Mom's extubation will occur on Thursday morning at 10AM.

Every human story begins full of promise, and for most of one's life, it's a mystery as to where and when the final pages of that story will be set. We harbor the illusion that that non-specificity can somehow stave off death: as long as we don't know the exact time and location of our demise, life seems to have no limit.

But for Mom-- or her body, at least-- we now know. Mom will die in Washington, DC, inside the Walter Reed Army Medical Center, either in the Ward 40 ICU, Bed 7, or upstairs in a one-bed palliative care facility (assuming Mom lingers longer than an hour off the ventilator, and further assuming that the bed hasn't been taken by someone else). Mom will fade away to a chorus of mechanical whooshes and beeps and drips, with medical staffers outside her berth going about their business-- some serious, some joking with their colleagues, blissfully detached from this, our family's threshold moment.

But Mom will leave us in the daylight, and she'll be surrounded by her family: those who love her most. We four guys will be there for her, along with Pastor Jeri and my other brother Mike. We'll stay with Mom until the doctor declares her dead and announces the time of death. This will set in motion a series of events that are, thankfully, out of our control: the signing of a death certificate, the moving of Mom's body to the morgue, its transferral to the cremation service, and the service's completion of the death certificate.

At that point, we regain some control over the proceedings. Mom's ashes will be delivered either to us or to the church, depending on whatever Dad arranges. We'll continue to hash out the format for the memorial service (probably Saturday, January 16; we'll confirm this). I'll finish the photo tribute and my eulogy; Dad will compose his as well. Sean will rehearse with some musician friends; he's already selected two classical pieces for the memorial-- pieces Mom loved. The family will comb through scriptures for appropriate verses.

But back to the present. This day, Wednesday, is everyone's final chance to visit Mom. I apologize if some of you have been turned away by the ICU staff; we had originally been told that anyone could visit Mom at any time, but we've heard reports from some that the ICU staff is asking non-family members to visit between 11AM and 8PM. The staff itself hasn't been particularly clear or consistent about visiting policy, so please call ahead to confirm that it's OK to see Mom at your desired time.

I'm not sure what I'll be doing; I may stay with Mom a few hours throughout the day, then go home, sleep, and return in the morning to be with her in her final minutes before she steps through the Great Door. Or I may decide to remain with her through the night-- one last vigil at her bedside. I really don't know.

REQUEST:

Do you have regular photos or digital photos of Mom that you would like to be included in the pictorial tribute? Please email them to me (my contact info is available through a link on the right-hand sidebar of this blog) or mail them to our family (email me for our address, which I'm hesitant to display in public) as soon as possible. If they don't arrive soon, I might not be able to include them.

If possible, please indicate the YEARS in which the photos were taken. I'm segregating photos by decade, in this format:

Chapter 1: 1940s-1960s
Chapter 2: 1970s
Chapter 3: 1980s
Chapter 4: 1990s
Chapter 5: The Aughts (2000-2009)
Chapter 6: The Cancer Period (4/2009-12/2009)

I don't want Chapter 6 to scare anyone. I have no desire to show vivid images of Mom's disease. There will be no MRI photos, no pictures of her damaged skin or of her craniotomy site, no photos of Mom's final weeks (as you can imagine, I never took any). There will, however, be images of Mom in various stages of disability. This can't be helped. Some images will be painful to see, but trust me: whatever pain the viewer feels won't compare with the pain of having actually been there, with Mom, to feel her misery up close.

Chapter 6 is important to me. This is the time when I reconnected with Mom in ways that hadn't been open to me since my childhood. The cancer gradually stripped Mom of her sophistication and returned her, however cruelly, to a state of simplicity that pared away a lot of the anger and resentment that often characterized my relationship with her, especially during my college years and my twenties. Did I pity Mom during her illness? Of course I did-- who wouldn't pity a person in such straits? Would she have resented my pity? Of course she would have. She did, in fact, get angry with me when she discovered that I didn't plan on returning to my trans-American walk. She knew I was staying because of her, and the thought burned her.

But any disease that rips away a person's dignity will engender pity. As proud as we were of Mom's defiance, it grieved us to see her independence drain away as quickly as it did. At the same time, the disease was a gateway through which I found myself once again able to hug Mom, touch her face, kiss her cheek or forehead, and hold her hand for long, long periods. I walked with her, joked with her, and above all, I fed her. Our relationship had become both a role reversal and a regression.

For Dad, too, this newly docile Mom was finally accepting his tender gestures without her usual Korean brusqueness-- the silly feminine rebuffs that Korean women will use to pretend that a man's gestures mean nothing to them. Perceptive men, like Dad, see through the ruse and understand that, hidden underneath such denials, there lies a deep and abiding love. But with the cancer peeling Mom down to her core, the time for ruses had ended. Dad, too, was introduced to a simpler, more direct emotional connection with Mom, one not complicated by the mind games that couples play. Her "I love you" to Dad was evident in the way she looked at him and embraced him-- toward the end, she was holding on to him for dear life whenever she had to move anywhere. Her dependence was complete, but it was matched by her absolute trust in Dad.

I've spent these months in Mom's role, frequently carping at Dad whenever I felt he was making a serious mistake or being generally loopy. But in the end, Dad was the one who was there to take care of Mom every time she awoke and every time she went to bed. He faithfully gave Mom her meds, following a schedule had had painstakingly plotted out. He was (and still is) the one taking care of all the paperwork associated with regular bills, insurance, and all the rest. He's even been sustaining me during this jobless period of my life with regular monetary infusions. Dad's retired, and neither of us could have taken care of Mom as we did had we gotten jobs. As I said: 24/7 care.

So much credit must go to Dad for the way he ministered to Mom. If imitatio christi (the notion that one should use Christ's life as a template) includes some analogue for foot-washing, then Dad was Jesus a thousand times over. He washed Mom; he insisted on being the one to prep her for travel, and despite the wrenching pain in his back, he was determined to be the one to lift Mom onto and off her seat in the van, almost every single time.

Tuesday night, after the doc and social worker and chaplain had left, Dad stared at the floor and said he felt he had let us all down by not somehow keeping Mom with us.

You didn't let anyone down, Dad-- least of all us and Mom. I saw that in Mom's eyes.

People have been writing me to say that I've done all that I could have for Mom. In truth, all of those good folks should be sending that message to my father.

_

a few thanks

2010-01-06T02:19:00.004-05:00

Our thanks to Mrs. Eleanor Landgrabe, my former French teacher, for having written an absolutely beautiful tribute to Mom. Mrs. Landgrabe stopped by our house a little after 7PM (her husband, Dr. Ed Hayes, was in the car) and handed my father a small hard-bound book filled mostly with blank pages-- blank except for the first five or six pages, on which Madame had left her eloquent letter, which was addressed directly to Mom.

Since the rest of the book is blank, we've decided to use it at the reception following the memorial service. Our hope is that Madame's message to Mom might inspire others to write their own messages therein. The book is small; we might need to add an extra binder (with lots of paper) for others to write their messages.

Our thanks to the people who have been visiting Mom in the ICU. We're sorry that visitors have had to see Mom in such a broken state, but we're glad they made the effort to be there. One thing I've learned over these months is the importance of being there in a crisis.

Also: a big thank-you to my brother David. On his iPhone, he had a heart-warming photo of Mom and Dad. During our family's talk with the medical personnel, David felt that our interlocutors needed to be reminded that Mom isn't just a sack of dying flesh or a jumble of graphs and numbers: she was and is a person, someone whom, in better times, they would have gotten to know and love. David's picture showed Mom as we had known her: standing with Dad, glowing with life, happy as a clam. I hope the doctor, the social worker, and the chaplain understood David's wordless message.

Over the months, we've seen many medical professionals cut Mom apart analytically, using the language of statistics to measure the progress of her cancer, the probability that a certain treatment might delay tumor enhancement, and so on. I'm not against such language; I've relied on it myself. But too often, we've seen how the language of numbers can, when overused, create a psychological distance that makes the entire therapeutic/treatment process feel cold. Worse, such language (and the thinking behind it) can blind the medical professionals to the tangible personal reality sitting before them-- the frail living being in her wheelchair who has no choice but to accept whatever pronouncements and decisions are made by those around her. Even some social workers operate according to discernible rhetorical formulae, asking questions that shepherd the conversation along predetermined lines of thought.

Mom was never a set of statistics; if she had been, her initial MRSA infection would have been anticipated; the same would have been true for her allergy to vancomycin and the uselessness of carboplatin. But at every turn, Mom's battle with cancer veered-- always in a negative way-- from the statistical path. Most GBM sufferers don't experience rapid tumor enhancement within eight weeks; Mom did, as we saw with her second mass. Most people don't suffer near-lethal post-operative MRSA infection; Mom did. Most GBM patients are men; Mom's not. In the end, Mom didn't even come close to enjoying the mean life expectancy of the typical GBM patient (13 months; Mom barely made it through eight-and-a-half months). Statistically speaking, Mom should still be quite alive and more or less functional, with several months of life ahead of her. But many of the docs saw her through the lens of their stats, and that explains, in part, the failure of their treatment methods.

All the same, the medical community deserves thanks for what help it could give Mom since last April. Like Dad and myself-- Mom's 24/7 caregivers-- the docs weren't able to work miracles. But they did what they could, and for that, we're grateful.

As always, we're thankful to our fellow congregants for their compassion, presence, and help. Food, cards, flowers, phone calls, a wheelchair ramp, snow shoveling-- you name it, it's been done for us, and every member of Mount Vernon Presbyterian Church deserves our unreserved thanks. Dad constantly shakes his head in amazement at the gifts we've been given by the good people around us.

And not just MVPC: Mom's Korean and non-Korean friends, whether from her women's society or from her office, have been a wonderful support as well. From these groups, too, we've seen tremendous generosity in the form of cards, gifts, visits, and all manner of expressions and tokens of love.

Mom's relatives also deserve thanks: they've visited us, they've doted on Mom, and they've read this blog and cried about the news of Mom's progress. I'm especially moved by my cousin Ji-hyae's framed set of two photos of Mom and the rest of us. I've stared and stared at those pictures, which make for a heartbreaking contrast with what's happening now.

I know I've forgotten dozens, maybe hundreds, of people in this post. I apologize. There have been times when I thought I should create a cute animation of scrolling text-- like the ending credits of a movie-- to which I could add names as needed. But I never got around to doing that, and I'm sorry. In private, I've done my best to thank people as I see them: every time we've received food or some other form of face-to-face help, and every time I've received emails from both friends and strangers who have somehow found this blog.

So I feel I need to cover all the bases. To all and sundry, then: thank you.

_

we'll survive this

2010-01-06T01:31:00.002-05:00

Our hearts haven't completely turned to ash yet. There's still some humor rattling around in there. On Tuesday night, we visited with Mom, then had a closed-door meeting with the on-duty doctor, the army chaplain, and the social worker to discuss end-of-life and post-mortem issues.

Afterward, we said our good-byes to Mom, and David suggested an outing at IHOP (for my foreign readers: IHOP is the pretentiously named International House of Pancakes-- as if the chain were popular in France or New Zealand or Korea). We went there and ordered shamelessly high-carb meals. David's meal, a cheesesteak, had too many onion rings on the side, so at the end of his meal, he decided to stack them and top them off with a square-cut piece of ham to create his own version of the ancient Korean observatory, Cheomseongdae. See below:

Inspired. And an indication that, even with death this close, our family remains unbroken.

_

close to a decision

2010-01-05T15:04:00.002-05:00

We're not totally decided yet, but Mom's extubation will most likely occur this coming Thursday. We'll be leaving home around 7:30PM to be up to see Mom and to talk to the doctors about what they think. We'll base our decision on what we hear from the docs.

Our thanks to Pastor Jeri for sitting and talking with Dad, Sean, and me about What Happens Next. It's comforting to know that so many people are in our corner to help us with the coming transition in our lives. A lot of the things that I thought we'd have to worry about have turned out not to be a problem. As a family, we can focus primarily on the important things, knowing that a lot will be happening in the background on our behalf. For example: the church already has templates for memorial liturgies, so it's merely a matter of tweaking the liturgical format to fit our preferences. Pastor Jeri also provided us with information about a well-respected cremation service, so the disposition of Mom's remains is no longer an acute concern. And the memorial itself doesn't have to follow hard upon the heels of Mom's cremation (which will likely be a private affair), giving us time to plan and prep for the memorial service and the reception thereafter.

Right now, the most important thing is to set the date for Mom's extubation, then call the cremation service, which will coordinate with Walter Reed on the moving of Mom's body. With all of that accomplished, a date for memorial service can be set; mostly likely, it will occur on January 16, one day before Dad's 68th birthday.

I'll be sure to say more tonight once we've been to the hospital, but for the moment, January 7 and 16 are looking to be the important dates for both the family and the public. The 17th, Dad's birthday, will be important for different reasons, and that will most likely be a family affair.

_

much to be done

2010-01-05T11:09:00.003-05:00

I had no energy or motivation to do anything last night, but Dad was in his bedroom for hours, sifting through old photos and finding ones that merit scanning for the photo tribute.

Today, Pastor Jeri is coming by at noon-- presumably to talk about the memorial and other post-mortem concerns-- and I've got to get working on a eulogy, photo prep, and research on cremation options. As a veteran, Dad had thought about Arlington Cemetery, and although they'll cremate the spouse of a veteran for free (more precisely, on the taxpayer's dime), they require interment or, in the case of cremation, "inurnment." We sons have rejected the notion of burying Mom's ashes at Arlington Cemetery; our own preference is for no grave, but instead for a scattering of ashes in the places she found meaningful.

Much to be done. Not a lot of time to do it. You might say that there'll be time to work on these things after Mom dies, but I'm not sure I can guarantee my own sanity after that point. So I need to be working on my agenda now.

_

"hours or days"

2010-01-04T19:48:00.006-05:00

We're at the very end. Mom's cancer has completely taken over, her scalp is covered with open sores, and her lungs are filled with pneumonia. She isn't running a fever because her immune system has completely shut down: it has nothing left to give. Mom might go on a while with her ventilator, or she might pass away during the night. That's how fragile the situation is. "Hours or days," we were told; that's how long Mom has.

Within 48 to 72 hours, our family is going to have to make the decision to extubate Mom, removing the support of the ventilator. I've been warned that that's how such things go, and it appears we're the family next in line to experience this particular pain.

The doctor tells us that it's possible Mom might continue to breathe after extubation; it happens with some patients, and it's hard to predict how long the breathing might go on. He said that, if it appears she's breathing on her own for some time, she can be moved upstairs to a small hospice facility where she will be given palliative treatment so that she experiences neither anxiety nor discomfort as she fades away. Both the doctor and the social worker felt that the entire family should be there for extubation, an idea that we already agreed with.

So there will be no true hospice care of any kind for Mom-- no homebound hospice, nor an institutional hospice. In her current condition, she's too delicate to move anywhere. The ICU will be where she spends her last few days, and unless we as a family fly off the rails and somehow decide otherwise, Mom will be extubated this week.

That gives Mom's friends only a few days to make their pilgrimage to her side. If you're a friend, tell her goodbye, and say how much you love her and will miss her. If you feel like crying, then cry. If you feel like laughing, then laugh. Don't force yourself to act with fake cheer or bravado. Now is not a time for falseness.

Sean and I are at the parents' house; we left before Dad and David did, having taken some time to say preliminary goodbyes to Mom. When David and Dad arrive, we'll be discussing the next steps, and getting right to work on whatever needs to be done for a memorial service, for cremation, and for whatever other post-mortem duties await us.

_

thinking ahead

2010-01-04T13:32:00.003-05:00

[NB: If you haven't seen the IMPORTANT ANNOUNCEMENT, please do so.]

Dad was up much earlier than I was, and has been on the phone all day with various people-- friends and folks who know something about hospice arrangements.

According to Dad, it's not looking good for homebound hospice care. Some of the organizations providing such care want two to three weeks' notice before they can move equipment to a given house. Others are unable to provide ventilator-related services. Even with institutional hospices, there are hurdles. Moving Mom anywhere promises to be logistically and bureaucratically difficult.

So for now, Mom remains in the Walter Reed Army Medical Center ICU. We'll be seeing her soon; first, I need to hit the local post office to pick up two Christmas parcels. They would have arrived in time for Christmas, had it not been for the snowstorm.* Both are gifts for Dad.

Later today, I'll begin gathering photos for my project: the creation of visual tributes for Mom. Most likely, the blog will eventually link to a Flickr.com slide show with hundreds of scanned and digicam photos of her life. Those same data files will also be turned into a PowerPoint presentation that, with the proper digital projector, can be shown at any given venue. And finally, physical photos will be needed for a walk-by display-- something a bit more old-school for people who prefer their pictures to have some heft and reality to them, as opposed to being mere wispy photons.

There are other projects as well. Before I discuss the specifics of memorial service arrangements with my pastors, I need to run by several scenarios with Dad and my brothers. I already know that Mom wouldn't have wanted pageantry, but I also know that there were things in life that she loved, such as the classical music that both David and Sean provided through years of violin, viola, cello, and piano playing. (Sean has been a professional cellist for several years.) Such elements should be a proper part of Mom's memorial service.

Finally, I need to start working on a eulogy. I've gone back and forth on this idea: on one hand, a eulogy is a printed document that allows the emotionally distraught speaker to coast through his speech, using printed words as a crutch. On the other hand, a printed eulogy, one that's well-planned, allows the speaker to say everything he thinks should be said. The danger of speaking extemporaneously is that one might meander and become forgetful, so overwhelmed with directionless emotion that it becomes impossible to voice the most important things. No eulogy can ever do full justice to the person being eulogized, but every loved one who speaks on behalf of the dead has an obligation to honor that person as well as possible.

Of course, there's no real "right" or "wrong" way to approach eulogies. You go with what works for you. For me, I suspect a written speech will be best. But I may change my mind.

Those are our projects, both for today and the days to come.

*Whatever happened to "Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds" (see here)?

_

IMPORTANT ANNOUNCEMENT

2010-01-04T02:24:00.003-05:00

We are now at a stage where Mom is never going to wake up. Her dependence on her ventilator remains the same as when she was first admitted into the ER at New York Presbyterian Medical Center. Since that night, she has shown no obvious signs that she is interacting with the world anymore. Her body still lives, but as my buddy Mike phrased it, "much of what makes Mom herself has already passed."

We are, therefore, no longer concerned about whether the unexpected presence of visitors might stress Mom. I had, for many months, done my best to defend Mom from all manner of well-intended but clumsy gestures, chief of which was the tendency of some people to try to visit her unannounced. Not only was this disrespectful of our repeatedly stated wishes, it was also very stressful for Mom who, at the beginning of this ordeal, often wanted to disappear instead of being seen. It was primarily Mom's stress that motivated me to set boundaries. Now, however, those boundaries no longer matter.

So the new visitation policy for Mom is simple: if you want to see her and pay your respects before she passes away, if you want to touch her or kiss her or hold her hand one last time, NOW IS THE TIME TO VISIT HER.

Some people have trouble visiting with the dying and/or the loved ones of the dying. Such people feel they won't know what to say, or they're afraid they might burst into uncontrollable tears. Believe me, I've been there, and I'm here to tell you that such worries are rooted in one's own ego. Don't worry about how you'll look and act in front of Mom or us. Those are mere externals-- superficial by nature. If you pass up the opportunity to see Mom merely because you're worried about yourself, then you'll kick yourself later, after she's gone, for not having had the courage to see her one last time. "Goodbye," done face to face, brings a kind of closure that avoidance never can.

Other people may feel that my often-prickly defense of Mom's dignity and tranquility-- especially when it came to my resentment at unannounced visits and my rejection of bogus "cures" proffered by some-- was a sign that I simply didn't want such people around. Not true. All I was doing was enforcing the clear boundaries I had set up. On this blog, during Mom's long period of suffering, I have repeatedly preached the gospel of realism: hope, but not false hope; mindfulness, but not fantasy. Some people, still in denial, tried to offer us superstitious or pseudo-scientific remedies that had nothing to do with Mom's cancer. I, like Mom, am not disposed to suffering fools gladly, so I tended to reject such "kindnesses" rather brusquely and directly. Hogwash by any other name is still hogwash, and even when the potions and spells were offered with kind intentions, I didn't look kindly upon them.

But the rejection of hogwash isn't the rejection of the whole person. We're all capable of saying and doing nonsensical things, and we'll often do such things at exactly the wrong time. For me, if you make a single mistake, you're not persona non grata. If I held everyone to such a strict standard, I'd be a hypocrite, since I myself say and do ridiculous things (more often than I care to admit).

That said, I don't regret the stance I've taken in defending Mom from the slings and arrows of well-intended silliness. Not one bit. I'd do it again. But if you're one of the people who feel stung by my defense of Mom, then-- as is true of the person who's worried about how he'll feel or act when he sees Mom-- I'd suggest putting ego aside. Forget about me; go be with her.

So that's where we are now. Mom is getting ready to leave us, and now is the time for everyone to say their final goodbyes. If you're unable to make the trip to be by her side, I understand. But if you're holding back from visiting Mom for reasons of pride or ego, then you should let those childish notions go and just see her. She doesn't have much time, which means you don't have much time.

Mom's current location (check this blog for updates if/when she's moved either to an institutional hospice or back to our house for homebound hospice):

Walter Reed Medical Center
Building 2, Ward 40, Bed 7

According to the ICU staff we met, Mom is accessible 24 hours a day. There's some debate as to whether there's a limit to the number of people who can be inside her berth at any given time, but we had three visitors at Bed 7 on Sunday: David, Dad, and me.

Depending on when you show up, you might see some or all of our family there. Mom needs your love, but we guys could probably use a few hugs, too. I hope that's not too forward of a request, especially after the above stern, finger-wagging lecture.

_

how Sunday went

2010-01-04T00:10:00.002-05:00

For me, Sunday meant waking up late after a decent night's sleep. Two friends and fellow congregants from our church, Mr. and Mrs. Doe, arrived at our door with food: a hearty soup, Italian bread, a salad mix, and cookies. Our thanks to the Does, whose food we ate (along with the food from Mrs. Burns and the Morrisons) later in the day for dinner. I regret not seeing our guests: I was downstairs, probably showering. Dad was the one who greeted them.

Our goal for the day was to see Mom, so Dad and I shoved off around 2PM. I had nearly emptied the van's gas tank after (1) driving home from New York, then (2) driving back into DC to pick Dad up. Before Dad and I struck out for Walter Reed Medical Center, we drove to Fort Belvoir to gas the van up (gas is usually about 20-30 cents cheaper on base). On the way to DC, we picked my brother David up, and once we got to the medical center, we saw that Sean was there. Sean left soon after our arrival.

Mom's new ICU berth proved to be larger than I thought. I had imagined something cramped, slightly bigger than a closet, in but fact there was enough room for three visitors (plus a doctor) to sit or stand in relative comfort. Mom's room was comfortably dark when we went in. Her poor eyes remained swollen; we were told that she was still receiving regular applications of petroleum-based ointment to reduce irritation and protect the eyes from over-exposure, and we saw for ourselves that, unlike in New York, someone had attempted to tape Mom's eyelids shut. The attempt had been only partially successful; Mom's right eye in particular has now become so swollen that it will probably never completely close again. A nurse came in to re-apply ointment and re-tape Mom's eyes; he, too, was unable to close the right one completely.

Mom herself was as still as death, but her hands remained warm. More to comfort myself than to comfort her, I again sat beside Mom and placed her left hand on top of mine, allowing her inherent warmth to radiate into me. For a while, I could fool myself into thinking that she had placed her hand there-- that it was her will, not merely the pressure of gravity, that kept her hand where it was.

Mom's vital signs were bizarrely good, though: heart rate 114 (high, but better than 140), blood pressure 122/58 (MAP = 78), pulse-ox 100 (David noted that, with the ventilator set for 80% oxygen, Mom might have been over-oxygenated; a respiratory tech later adjusted the machine downward), and best of all, respiration at 16 breaths per minute-- the lowest and calmest rate I had yet seen.

But Mom's serenity and her tranquil vital signs belied the fact that the top of her head had begun to look like the surface of a world that had suffered a global war. The tumor that had begun to rise through the hole in her skull was even more prominent, and red blotches, patches, and blisters were making their way from the top of her head down the left side of her face. Several things seemed to be happening at once: infection, lingering irritation from all those days spent with the helmet on, belated effects from radiation and chemotherapy, and possible enhancement of the tumor in new spots on her scalp. Even the nurse was unsure how to read all the signs, but on a gut level, I knew they meant nothing good.

The ICU is already viewing Mom as a palliative case: they're doing what they can to make her comfortable, but they're not giving her antibiotics or doing anything to prolong her suffering. Both her infections and her cancer are, I suppose, free to work their work on her, and it seems to me that we are, at long last, nearing the end. This is no longer a struggle or a battle with cancer; cancer and the germs have won, and we are merely witnessing the mopping-up.

Dad was, once again, in and out of the berth as he went about gathering information. He wanted to track down the social worker so he could talk with her about hospice options, but it was Sunday, so the social worker wasn't there. Dad did manage to take down some crucial phone numbers; he'll be calling people in the morning, and his hope is to have Mom scheduled to go somewhere-- home or to an institutional hospice-- by the close of business on Monday. Mom's actual move, if Dad is successful in finding and securing a hospice arrangement, will likely occur later in the week.

Dad had also brought along a pile of Christmas cards from various friends. He read the handwritten messages in the cards to Mom, asking me to decipher the Korean messages as best I could. One of Mom's old friends had knitted her a scarf. Mom will never wear it, but David took the scarf and drew it along Mom's right hand, allowing her to feel it.

Throughout our nearly three hours at the ICU, I did little but sit by Mom's side with my hand nestled under hers. Sometimes I shifted position and held her hand. Sometimes I stroked it. My brain didn't know how to reconcile Mom's organic warmth with her corporeal inertness. And the more I thought about it, the more I came to believe that Mom had already left us on the night between December 21 and 22. She had been there, in the office, to hear the death sentence handed to her by Dr. Boockvar from wherever he was in Florida; she had seen the crestfallen looks on Dad's face and mine, and later that evening, she had sat silently in her wheelchair, between spoonfuls of soup, and stared at me as I both sobbed my apologies to her for not having been able to do more, and begged her forgiveness for all my failings as a son.

That, I increasingly believe, is when Mom concluded it was time to look skyward and hitch a ride with the wind. There really was nothing more for anyone to do. With no hope from any medical corner, and with the cancer and the pneumonia raging within her, she may have decided-- at a primal, cellular level-- to stop fighting. For her family's sake.

But after spending eight months by her side, after following her bodily rhythms and feeding her meal after meal, after exchanging ten thousand hugs and going on who-knows-how-many walks in the local park, I feel almost telepathically linked to Mom. Her shutdown is now my shutdown, too. She's dying, and my heart is withering. As I wrote to my buddy Mike, I fervently wish I could magically take all Mom's cancer into myself and perish in her place. If such magic were possible, I'd use it gladly, no matter the cost to me. But that's never going to happen, and I feel there's no longer anything I can do except watch my mother die. When we left, I whispered to Mom what I had told her before in the New York ICU: "You can go anytime you want. It's OK." That was a lie, though: I don't want her to leave when I'm not there to see her off.

We three drove home-- Dad, David, and I. We had tested one route on the way up to Walter Reed; it struck us as rather long and out-of-the-way. The more direct route, which we took in the evening, seemed much shorter, but it also took us through the heart of DC, i.e., through a gauntlet of traffic lights. On a Sunday evening, though, the lights weren't a huge problem; we moved along at a good clip.

The ride back home was quiet. We dropped David at his place so he could pick up his own car and drive separately to our house. Dinner was "every man for himself," a smorgasbord of victuals prepared by others... and perhaps a harbinger of dinners to come as we lose, forever, Mom's savvy feminine touch at mealtimes. The rest of our evening was, as you might imagine, similarly quiet.

_

awake

2010-01-03T12:02:00.001-05:00

A new day. Slept great, almost eight hours, with the dehumidifier providing its own heat. Will be off to see Mom soon.

_

home and thanks

2010-01-02T21:44:00.002-05:00

I got to Alexandria, Virginia by 3PM, but instead of going straight home, I had a late lunch with my brother David, who very graciously paid for his big brother. Dad and Mom arrived at Walter Reed in DC not long afterward. I got home from lunch around 4PM, and managed to unload the van and even begin unpacking before Dad called from the hospital to say he was ready to be picked up. I drove to Walter Reed and picked Dad up at the facility's Georgia Avenue gate (the regular 16th Street gate is closed on weekends); I didn't go in to see Mom. According to Dad, her new berth is tiny.

Dad told me that Mom had endured the trip about was well as could have been expected. Her vital signs suggested some agitation during the move, but once she was settled into her new ICU berth, she began to calm down. I was a bit worried to hear that her diastolic pressure was, at one point, over 90, but I'd seen her blood pressure climb even higher while she was in New York.

Pastor Jeri had coordinated with Mr. and Mrs. Morrison from church, as well as with Mrs. Burns, and all three fellow congregants arrived at our doorstep with dinner. My brother Sean had stopped over and, Atkins disciple that he is, he was delighted to see that part of the dinner consisted of rotisserie chicken, which is about as Atkins-friendly as can be. Dad, Sean, and I offer our thanks to Mrs. Burns* and to the Morrisons for their food, and we thank Pastor Jeri for coordinating the drop-off.

Dad's been going through the pile of mail we've received in our absence. While we were in New York, we had had to request that the letter carriers stop delivery and hold our mail at the local post office; David, who had originally come back to northern Virginia with the intention of returning to New York (all this was before we found out that Walter Reed had a bed for Mom), picked up the mail and even sorted it all for us. We've received a bundle of Christmas cards and a few gifts for Mom. Dad wants to read the cards to Mom tomorrow. Mom received a scarf from one of her long-time friends... it's a shame she'll never be able to wear it. Perhaps we can brush it over her fingers.

Tonight, we had a bunch of unpacking to do. I took care of the kitchen items, my own clothing and toiletries, and the "media centers," i.e., my two computers. Dad took care of his and Mom's suitcases and bags; he also combed through the mail, throwing away junk, keeping cards and gifts. We've got some "Sorry we missed you; you have a package" postcards from the post office; we'll have to retrieve those parcels on Monday.

As I worried would happen given all the precipitation in the DC area, my downstairs "dungeon" bedroom suffered some serious leakage. The room smelled dank and musty when I entered it, and I'm running a dehumidifier in there right now (it's right behind me as I type this). The dehumidifier will need a few days to take care of the problem-- a problem that has occurred many times before over the course of our residence here, despite our best efforts at sealing and drainage. The cause of the problem may lie in a cracked foundation: as Dad has noted in the past, the leaking often occurs right through the walls. Years ago, it also happened through the windows (the dungeon's windows are at ground level, slightly above eye level for me), but our new windows have taken care of ground-level leakage and seepage.

We're not done settling back into the house, but we're too tired to do any more tonight. We'll start again tomorrow.

*We've learned that Mrs. Burns's wonderful children aren't really children anymore: they celebrated their 14th birthdays today. Their actual birthdays are on Sunday, but Saturday was party day. Congratulations, Beth and Brian, on turning 14!

_

the empty coat

2010-01-02T08:03:00.004-05:00

A few days back, I asked Dad, "So from now on, Mom will never be riding in the van again, will she?" Dad said yes, that's right. When Mom fell ill on the night bridging December 21 and 22, we had passed a threshold.

Since that night, I've been in and out of this hotel room a few times per day, which has meant a great many trips to the coat closet. Inside that closet hangs Mom's empty coat-- a garment she'll never wear again. Mom has reached a point where she now lies beyond our help: from now on, every time she needs to be moved, it'll be professionals, not her family, who do the job.

As I pack our possessions for travel back to northern Virginia this morning, Mom's empty coat is one of the items I'll be folding up and taking back with me.

_

onward to the next phase

2010-01-01T23:23:00.003-05:00

Many thanks to my buddy Mike for coming up to New York to spend a few hours with our family. Mike's a busy father of three; it was good of him to take time out of his schedule to be here.

Mom's ambulance, which will take her from New York Presbyterian Medical Center down to Walter Reed Army Medical Center (WRAMC) in DC, will arrive for Mom at 9:30AM. Dad thinks that departure might not be until 10:30 or 11AM. He'll be waking up at 7AM and plans to be over by Mom's side by 8:30AM at the latest. I, meanwhile, will wake up at the same time, get myself ready, pack up the van with everything except whatever paperwork Dad needs, and check out along with Sean. We might depart as early as 9AM; Sean will drive separately. If we run way behind, we'll depart by noon at the latest.

Dad will ride with Mom down to DC; I'll drive alone to northern Virginia. It's likely that I'll arrive at my destination first; Dad thinks the ambulance will be legally constrained to drive more or less at the speed limit, whereas I'll probably be hitting 80 along with the rest of the traffic, barring traffic jams. Once I get home, I'll unload the van and prep it to pick Dad up from Walter Reed.

Mom will be placed in Ward 40, which is billed as the coronary care unit of the WRAMC. I'm not sure why she'll be there instead of the pulmonary care unit, but I imagine this has something to do with the availability of beds. She probably won't be there long: we need to decide whether she'll be moved to a homebound hospice situation, or to an institutional hospice. Right now, it's hard for us to see beyond Saturday.

I'd like to thank my buddy Dave for his private support and repeated offers of help. Thanks, as well, to Pastor Jeri for her support and to Pastor Kim for coming north to visit (even though I personally didn't see him). I've learned from Pastor Jeri that Mrs. Burns and the Morrisons will be preparing dinner for Dad and me. We appreciate their kind gesture. Unfortunately, we still don't know when we'll be home for the evening; Dad will likely have to work with WRAMC staffers on Mom's paperwork, and he might also want to linger with Mom in her new setting (as will I). 8PM is my best estimate for when Dad and I will finally be home. That might change.

The weekend will be mostly about settling Mom in and settling ourselves down, using the quiet time to plan our next moves. There isn't much left to plan; we're at the endgame now. Here on in, our only real goal is to keep Mom comfortable during her final decline, and to settle final arrangements.

Mom herself seems beyond caring at this point. She's only slightly reactive to stimuli, at least according to what we can see and feel and read on the various monitors. I have no notion of what her inner life is like, or whether she might even properly be called "conscious." As always, I can only hope that she floats in a comfortable fog, suffering nothing at all, closing her poor, swollen eyes as much as possible. Does she take any comfort from our presence, from the sound of our voices? Does it warm her heart, the way it warms mine, when I place her hand atop my hand? Or is Mom's entire existence now focused on the ruthless, mechanical rhythm of her ventilator, and the painful intrusion of the other tubes leading down her throat? Her face still registers pain when she gets suctioned. I feel that pain-- perhaps only bluntly and vaguely, but I feel it.

Mom doesn't deserve to suffer. If I could take her place, I would, but I can't. All I can offer instead is this simple wish: may her mind retreat from all the world's noise, and from the ugliness of the medical process. May she know some form of peace before the final, permanent stillness.

_

the slow prep

2010-01-01T10:17:00.003-05:00

My buddy Mike is on his way up to New York as I write this. Dad's at the hospital, nailing down tomorrow's departure time (for Mom's ambulance) and making other arrangements. My brother Sean just stepped out of the hotel room for a few moments, and I'm awake for no reason I can fathom.

We'll be leaving New York tomorrow. In theory, I can start prepping for departure today. There are no more space considerations for the minivan: I'll have so many open seats that, even if we went on a shopping spree, I'd have plenty of room for extra bags and boxes. When we came up to New York, interior space was a problem, but now, for the return trip, I'll be the only one in the car: Mom and Dad will both be in the ambulance going down to Walter Reed. Sean drove up separately, and David-- who had planned to return to New York on Sunday-- is already in the DC-Metro area and can just stay there. So along with the van's rear storage space (after folding over its rear seats), I'll have three extra chairs on which to place everything. We've also eaten up the majority of the supplies I'd brought with us, so there's actually less to bring back.

All in all, there's really no stress about prepping for tomorrow's trip, so I plan to take it slowly.

Happy New Year, all.

_

our humble toast

2010-01-01T02:08:00.002-05:00

We watched "Apollo 13" at the hotel until a little after 11PM, then went over to see Mom. I brought along three paper cups and some white grape juice; our intention was to sit with Mom and greet the new year together.

The ICU crew was a jumble of new faces; most of the regulars were off somewhere. Mom was wearing the same stick-on protective "goggles" that had been placed on her face earlier in the day; her eyes have been so irritated and swollen that they can no longer close completely. Today's nurses, I discovered, had failed to apply the proper eye drops to Mom, using the regular drops instead of the petroleum-based ones. Mom looked awful.

Sean declared his inability to toast the new year with the grape juice I had brought; his Atkins regimen demanded something sugar- and caffeine-free, so he went to a drink machine and bought a bottle of water. I flipped the channels of Mom's TV until I found a live feed to Times Square-- not the Dick Clark/Ryan Seacrest celebration, but an honest-to-goodness live feed of the square, unadorned with any ticking clock in the corner to alert us to how much time we had ("five minutes!") to break out the drinks. The only timer we would see was the one at Times Square itself: the huge video clock and the dropping ball atop One Times Square.

We prepped our drinks, we three guys, and toasted the New Year. I acknowledged that the year was going to bring sadness, but I also expressed my hope that it would bring a measure of happiness, too. The words felt hollow, and no one else expressed any wishes or hopes for the new year.

Poor Mom was trying to sleep, but she was also more reactive to our touch than she had been before. Her half-closed eyes would try to pry themselves more fully open every time I patted her right hand, so I stopped patting it, and we all strove to speak only in low tones. Not that we spoke much: there wasn't much to say.

Sean left first; some of his New York friends were having a get-together. Dad and I spoke briefly with a respiratory tech who came in to look at Mom and tap some data into the room's computer. She contemplated doing a bit of suctioning, but decided against it because Mom needed her sleep, and such a procedure would have been painful. The tech left, and Dad and I left soon thereafter.

So there we are: we ushered in the new year with paper cups of white grape juice and water, with quiet toasts and one humble wish, and with Mom lying in front of us like a ruler on a catafalque. We're looking forward to taking her back down close to home. I'm hoping Walter Reed has learned something since its 2007 neglect scandal, and will take good care of Mom. They have large shoes to fill: despite the recent problem with Mom's eye drops, I've been generally pleased and impressed with the New York Presbyterian Medical Center's ICU staff.

_

giving it a rest

2009-12-31T21:35:00.002-05:00

I had thought I might have the energy to write a "year in review" post, but in the end, I don't. If you've followed this blog since April, then you know how the year has gone for me and my family. Simply review the "events in a nutshell" entry, read the posts for the last two months, and you'll be up to speed on what 2009 has brought us.

We'll be heading over to see Mom in the ICU at 11PM, and will remain with her to see the new year in.

Happy New Year, all. May 2010 be a year of peace, prosperity, and happiness for you.

_

confirmed for Saturday

2009-12-31T18:20:00.002-05:00

Dad's done an amazing amount of legwork these past few days, and today was the payoff. Mom's now confirmed for a bed at Walter Reed Medical Center's ICU, and she'll be transferred on Saturday-- probably Saturday morning. We're checked into our current digs until Saturday, anyway, so the timing works out well.

The move to Walter Reed will buy us time as we decide whether to take the home-care hospice route or the more standard, institutional hospice route. Our thanks to Dr. Ed Hayes for suggesting that we consider Walter Reed's new hospice facilities.

_

Mom to leave soon

2009-12-31T17:15:00.000-05:00

Mom's been accepted at Walter Reed Medical Center's ICU. The only question, at this point, is when she'll be leaving. The transfer might happen as early as Saturday; otherwise, Monday is more likely.

_

setback

2009-12-31T14:26:00.004-05:00

Dad has discovered that someone was misinformed: National Naval Medical Center has no hospice facilities. We're looking at other options.

In the main, it seems that all other elements are in place: Mom has been deemed transportable, as long as the transport vehicle has a ventilator; we've secured a New York-based transport service that can take Mom wherever she needs to go, ventilator and all. The only question is where Mom's going. To a hospital? To a hospice care facility? Home, with some sort of specialized 24/7 care? We don't know yet, and with the New Year upon us, we're once again going to have to wait a few days before the situation can clarify itself. Meanwhile, Dad's trying hard to work with the social worker here, as well as with Dr. Berlin and his teammates.

My buddy Mike is heading up here tomorrow; he'll spend the afternoon with us, arriving in NYC around 1PM, then taking the 7PM train back to the DC area.

UPDATE: Dad says Andrews Air Force Base has no facilities for Mom.

_

rolling out soon

2009-12-31T12:34:00.002-05:00

I've finished making Dad some lunch, and will be toddling out to see Mom soon. I hope she's doing better than she was last night.

Later today, I suppose I'll be writing my "year in review" post. As you can imagine, the tenor of that post will be substantially different from the one I wrote last year.

_

better and worse

2009-12-31T01:01:00.004-05:00

Mom definitely got the shampoo treatment. Her scalp, which had looked flaky, scabbed, and generally unhealthy when the doc took off Mom's helmet earlier in the afternoon, looked much better when we saw her at 10:45PM. The entire surface of her scalp remained covered in spots and scabs, but almost all the flaking was gone, and the exposed skin was pinker and smoother. Mom's hair looked a lot better, too: less wild and matted. (She doesn't have much hair, to be sure, but back when she was still interacting with the world, she did care about what little she had.)

The bad news is that Mom remains diarrhetic, and while we were with her, her pulse-ox (a measure of oxygen saturation in her blood) plunged from the high 90s to the low 80s, and stayed in the 80s. This caused one of Mom's machines to warble in alarm, and attracted the attention of both the resident and the respiratory tech. The doctor played around with the controls, but the tech-- who Dad says knows her job quite well-- scolded the doctor and reoriented the settings such that Mom's pulse-ox reading went back to the mid-90s and stayed there. The current settings on Mom's ventilator are, if anything, a step backward: she now has to rely more heavily on the ventilator to breathe, and to make sure enough oxygen perfuses through her bloodstream.

Dad and I had planned to leave at midnight, but Mom's crisis compelled us to wait for her to stabilize. We didn't leave the hospital until around 12:30AM.

_

return of the Sean

2009-12-30T20:12:00.003-05:00

Sean is back from his trip down to Virginia. He said traffic was terrible on the New Jersey Turnpike, just as it had been for us. His friends are supposed to be throwing a sort of consolation party for him tonight, so he's gone off to see Mom first, and then will head out to meet with his friends.

_

helmet, shampoo, bloody mouth, transportation

2009-12-30T16:59:00.006-05:00

I was over at the hospital from about 1:45PM to 4PM. Dad and David got there earlier, and David had to leave to catch his train back down to northern Virginia.

Mom was, by some standards, doing better. When I came in, she was moving her left arm ever so slightly-- straightening it out and moving her shoulder in a manner reminiscent of a shrug. Around 2:10PM, I noticed that the left side of Mom's face seemed to have developed some sort of rash; it was patchy and red. We had, on several occasions, asked the docs and nurses whether they had been checking Mom's scalp regularly. They claimed they had been, but from what I could see, they hadn't done a thing with the top of Mom's head. With one of the docs there, we asked that Mom's helmet be removed to allow her scalp more of a chance to breathe.

And at that point, a rather bizarre and embarrassing exchange ensued: the doc asked, "You mean it's OK to remove her helmet?" David and I, somewhat taken aback, told the doc that we had assumed that they were keeping the helmet on Mom's head because they might have needed to move her from her current bed to another one. The doctor, for his part, was mortified. "No, we left her helmet on because she came in that way, and we assumed there was a special reason why it had to stay on." It was a classic example of lack of communication, and although I hesitate to speak in terms of "fault," I think it's fair to say that both sides, our family and the medical staff, dropped the ball on this one.

Luckily, the nurses were put on the case, and by the time I left the ICU at 4PM, they were prepping Mom for a "dry shampoo."

Mom's still completely dependent on her ventilator, but they've turned the setting down pretty low to allow her to make more of her own effort at breathing. She seemed ever so slightly more conscious today-- not in a truly "interactive with her environment" sense, but more in the sense that she was aware of the tubes down her throat and was trying to cough them up.

Mom coughed a lot while I was there, and while the docs say there's not much fluid in her lungs, her mouth seems to be generating a variety of secretions. Blood is also in the mix: the nurses told David that Mom had been biting her tongue. Mom had had a plastic bite protector in her mouth for several days; it's a piece of plastic that keeps the teeth from coming together. The protector was then removed for a couple days, and I guess that's when the tongue-biting began. She's got another protector in her mouth now, and the family has been authorized to use a nearby suction tube to suck out whatever buildup we see, whenever it approaches her lips. I had to do this several times while I was with Mom.

Otherwise, I spent my time in the ICU sitting in my default position: next to Mom's left side, with her hand on top of mine, radiating maternal warmth downward into my flesh.

Dad, meanwhile, was constantly in and out of the ICU as he dealt with a New York Presbyterian Hospital social worker and with Dr. Berlin, both of whom were trying to help Dad arrange the next phase of Mom's existence: transport back to the DC-Metro area-- probably to the National Naval Medical Center-- and installation in an acute care or hospice environment. The latest information Dad has is that NNMC does have a hospice facility, but their ICU may not have room for Mom, since they're dealing with an influx of war-related casualties. I don't see this as a problem for Mom: the NNMC hospice sounds more like the logical place for her to be, not the ICU.

Dr. Berlin seems to think that Mom is, as things stand, transportable with a ventilator, and that the question of "pressure versus volume ventilation" isn't even an issue for her. The problem right now is that Physicians' Transport Service (PTS), a Virginia-based medical transportation service, isn't licensed to drive Mom to a destination in Maryland. Going from Virginia to New York to Virginia wouldn't have been a problem, but NNMC is located in Bethesda, Maryland. Dr. Berlin and the social worker, Tara, are working on finding a New York-based transport service that would have no problem taking Mom to NNMC.

I've strongly suggested to Dad that, wherever she ends up, Mom should get a room to herself. If she can't spend her final days in her own home, I'd like her to have a room that we can make as homey as possible for her. That's not as easy to do when you're sharing your room with someone else. David warned me that this would mean spending more money. I'm sure it would, but it might be worth it in this case. I want Mom as happy and comfortable as possible. Surely that's worth spending extra.

_

off to see Mom soon

2009-12-30T12:02:00.003-05:00

Last night, I slept in a bed for the first time since I got to New York (I've been using my sleeping bag and a camper's foam pad, along with whatever hotel pillows have been available). Sean is down in northern Virginia; he'll be back in NYC this evening, so in the meantime I decided to take advantage of the temporarily-opened space.

Dad left for the hospital earlier this morning to continue working on arranging transport for Mom back to the DC-Metro area. After hearing iffy news about the Woodbine care center, Dad focused his attention on the National Naval Medical Center, which lies across the street from the National Institutes of Health (NIH), where Mom had been visiting Dr. Fine for her second-line therapy. Dad thinks the NNMC will provide better, more conscientious round-the-clock acute care for Mom, given her respiratory needs. He and Mom have been through NNMC before for various exams, therapies, and MRIs; Dad has a very good impression of the place as a whole.

I woke up and decided to make grilled cheese sandwiches-- a logical choice, given the supplies we have. I'm doing my best to save the family's money by cooking from our own resources, but we've been adding to our expenses by buying extra materials as needed. Luckily, we've had no shortage of free fruit thanks to the two edible fruit bouquets that were delivered to us. Those have been quite a godsend. In any case, despite the extra supplies-- both purchased and delivered-- we're whittling down the original mess of food that I'd brought with us. Once most of the food is gone, I told Dad that I plan to take a break from cooking in order to sample some of the simpler, cheaper fare that New York has to offer.

Dad, meanwhile, would like for Mom to go home on Monday. We have no way of guaranteeing that this will happen, but I can understand Dad's impatience. We didn't come up to New York just to stick Mom in an ICU; we had come up with a specific mission, which failed. At this point, all we want is for the final hill of the roller coaster to go as smoothly as possible for Mom. If NNMC can help with that, then good.

_

relaxed

2009-12-30T00:15:00.003-05:00

David and Dad both felt that, tonight, from about 10:30PM to midnight, Mom seemed relaxed for the first time since her entry into the ICU. I wasn't seeing what they were seeing, but their intuitions about Mom are no less valid than mine.

Mom did seem fairly peaceful when we came in. At one point, her blood pressure was extremely low, but the ICU staffers weren't overly concerned: next to the systolic/diastolic fraction on the vital stats monitor, there's a number in parentheses that the staffers consider far more important. I'm still unsure what this number indicates. Dad ventured that it might be an average of some sort, but when I mentally worked out the math by averaging Mom's systolic and diastolic measures, the result didn't match the number in the parentheses. David thought the number might represent some sort of average over time, but without knowing more, I have no idea what that might mean.

Dad, who's dead tired from all the calling and organizing he's engaged in, left a bit early-- around 11:30PM. David and I stayed until midnight, then we left Mom to her repose. May she rest well.

_