the Marissa Parks I knew

Its my birthday!!! Now, normally I would probably be depressed right now cause I'm getting "old". But today, I am celebrating getting old, and kind of happy about it! I love birthdays, and everything that they involve! I love dressing up, spending time with friends and family, being a princess for a day, taking lots of photos, cake, everything.
--Marissa, blogging about her 25th birthday on February 18, 2011

This is Marissa Parks, and you left a message on blog. I am very sorry to hear about your mom, and the pain that most come along with that. I have been diagnosed GBM, and I appreciate all the information you passed along. I shared the information with my dad, and I think we will look into that program. I am flying to Houston in April to see what clinical trials that can possibly provide as well. Like you stated, my parents are doing most of the research because I can't stand to read it about it. I know the facts and what the doctors told. I googled it once, and I decided that was it for me, and have just decided to take it one day at a time.
--from Marissa's very first email to me on February 23, 2011

I have the best friends!!! #thankful
--Marissa's final message on Twitter, 8:43AM, January 13, 2012

Marissa Parks died this past weekend. I don't know the details, but at a guess, her death was due to complications related to her brain cancer, glioblastoma multiforme. Only a few weeks earlier, in February, Marissa had celebrated her 25th birthday. That same month, she had undergone a surgical procedure and had come out still walking, talking, and smiling-- all with difficulty, true, but Marissa seemed far from defeated. The news of her death, which I discovered only yesterday (Saturday, March 11) from an update on Marissa's blog,* came as a shock. I had no illusions that she was on her way to recovery-- GBM has no cure-- but I had somehow gotten it into my head that Marissa had more time.

I never had the chance to meet Marissa face-to-face. What I know of her comes from (1) a few emails and Twitter DMs (direct messages) that she and I exchanged early in her fight with GBM, (2) whatever updates I saw on Marissa's blog, and (3) several extended conversations with her father, Brad Parks. My picture of Marissa is that of a strong-willed, energetic, often stubborn young woman who, once she learned her diagnosis, had no room in her heart for self-pity. She was determined to keep living her life in a spirit of unrepentant joy. In her few emails to me, she showed she also had a great, perhaps even wicked, sense of humor. Like any headstrong young woman, she occasionally locked horns with her parents, but at the bottom of it all was love, the foundation for everything.

Although I never met Marissa, I know that she loved and was loved. I know she had amassed quite a number of friends. I know how powerful her parents' feelings of love for her were-- and are. It pains me to think of Marissa's parents now: losing a child is a parent's worst nightmare. I can only hope they realize that, as hurt as they may feel, they did everything in their power for their daughter; nothing more could have been expected of them, especially in the face of a disease this relentless. Marissa herself did everything in her power to live a good and full life. What more can be asked of any of us? Life is a gift: merely waiting to die is not an option. Marissa took her gift seriously.

A close friend and I were recently discussing the unfairness of the fact that the world moves on after someone dies. My friend had just lost his Korean mother-in-law, whom he had loved dearly. It doesn't seem fair that billions of people are untouched by the death of someone we love; in our heart of hearts, we'd like the whole world to grieve with us, and to stay grieving. This isn't what happens, though; the world just keeps turning. I would never counsel the recently bereaved simply to let go of their grief and "move on." That would be callous. But if I were to give any counsel, it would be this: take heart in the fact that the world is always moving, because it means we're all participants in a great story, and that story never ends. We all continue in some way-- whether as an inspiring memory or as an actively guiding force, I don't know. But we go on, carried forward in space and time, in memory and action. Our echoes remain.

Requiescat in pace, Marissa.

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*In recent months, blogging duties had fallen to Marissa's cousin Megan.


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sorry for the lack of updates

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.


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setbacks

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.


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a good resource

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.


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over the fence

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.


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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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$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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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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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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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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