Friday, June 3, 2011

Marissa's miracle

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.


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Thursday, June 2, 2011

$50 from the goal

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.


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Tuesday, May 31, 2011

short week

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.


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Saturday, May 28, 2011

I hope she's OK

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.


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Friday, May 27, 2011

just another $150 to go

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...


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Monday, May 23, 2011

official weigh-in

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.


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Saturday, May 21, 2011

you go, Marissa!

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!)


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Monday, May 16, 2011

official weigh-in

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.


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Sunday, May 15, 2011

stay tuned

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


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Saturday, May 14, 2011

little to no ketosis

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.


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Wednesday, May 11, 2011

meals

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.


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Tuesday, May 10, 2011

no RSVPs

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.


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Happy Buddha's Birthday!

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:








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Monday, May 9, 2011

true start

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.


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Saturday, May 7, 2011

lessons learned #6: traveling light

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.

Friday, May 6, 2011

thank you, Dr. Steve!

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

Many thanks, man.


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Thursday, May 5, 2011

many thanks to Anonymous

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

All glory, laud, and honor to Anonymous!


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Wednesday, May 4, 2011

Happy Birthday, Mom

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.


















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Tuesday, May 3, 2011

$40 an hour

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.


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Sunday, May 1, 2011

my apologies to the recipients of the first fliers

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.


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