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Vita non est vivere sed valere vita est: Life is more than merely staying alive

Senator Edward M. Kennedy passed away this past Tuesday after a long battle with malignant glioma, a type of brain tumor.

The NY Times ran an obituary, remembering the senator, the last of the Kennedy brothers, as a formidable senator at the center of so much American history. Though at times, Kennedy had a rough personal life, at other times he seemed larger-than-life, defying death once as he survived a plane crash. Most recently, he has been championing the difficult topic of health care reform, even as he grew progressively hindered by his deteriorating health.

Another Times article reflects upon Kennedy’s life after his diagnosis little over a year ago.

“He was the only one of the Kennedy boys who had a semi-knowledge that his end was near,” said Mike Barnicle, the former Boston Globe columnist and an old friend who lives nearby on Cape Cod and visited the senator this summer. “There was no gunman in the shadows, just an M.R.I. It was a bad diagnosis, but it allowed for the gift of reflection and some good times.”

That’s it: a shadow in the wrong place, a harbinger of death on a picture. But it brings so much more than death.

Cancer is a sweet poison; as it possesses the dire potency of death, it has a sort of merciful patience, allowing its bearer time–however limited.  During its precipitous countdown, we are forced to choose what and who we value the most, to cling desperately to, and to savor life while it lasts. And though we are faced with the potential tragedy of our own deaths, we are given the time, if used wisely, to give meaning to this life. We have the power to turn tragedy into triumph.

Few others have this luxury before facing the end.

There’s a Latin saying, Memento Mori, which means “remember death”. Merchants would write it in their ledger books as a reminder of the transitory nature of profit, luxury, and life.  I once entertained the thought of getting this on a tattoo, though now it seems a bit ironic. My cancer may be just as permanent as a tattoo and yet it bears a much more potent message.

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On a lighter side, I recieved a bit of good news. It’s a nice change of pace, and it always makes me smile wider when I see my doctor smiling too.

This past Monday, I had another CT scan to follow up on that intense(ly boring) radiation treatment I received at UCSF.

I have been feeling unbelievably good these last few months. I just got back from a trip to the East Coast: Boston, New York, Princeton, DC. I did a ton of walking–and to think that only a few months ago I was in a wheelchair! Before my CT scan, I was bracing myself for bad news or more of the same, though feeling like change might just be in the air. My CT scan last April showed that the disease had stayed the same in some areas and progressed in others.

But when I went in to see my doctor later that day, he was beaming when he announced that we finally had some good news. Moderately good news, but generally no bad news.

The tumors have retreated a bit, enough to warrant a small celebration.

Several spots in my liver have disappeared altogether, some haziness in my lungs has dissipated, Big Ugly in my abdomen shrank a bit, and my hip bone is calcifying once again–a sign that my Zometa treatment (sort of like that Skele-Gro potion in Harry Potter) is beginning to work a lot faster than expected.

It appears that the treatment is working to not only hold the disease at bay but forcing it back a bit. My blood values are looking good as well, especially my liver/bone enzymes, which are almost at a normal level, which means that they aren’t as burdened by tumor activity as they were in February-April, when the values were around 10 times higher than they should be.

Now that I’m tangibly and medically much better, it’s back to “normal” life. I still have a few more scans and tests ahead of me, but nothing particularly disruptive. I have a job (internship) interview this Friday (eek!), and I’ve been working on some writing samples, planning a photo project, and working on my site.

And yet, when I am feeling good, I pray that I am still biding my time carefully, wisely, and usefully. Strange, how it’s often more difficult to consider the value of life when things are going well. I suppose we don’t often realize what we’ve lost until it’s going, or gone.

Forget my birthday (in any case, when you’re past 21, every birthday is another sore reminder of approaching middle-age); this news is bigger:

1. I stopped losing hair. This is excellent. I’m no longer afraid of getting a haircut and terrifying the hairdresser when all my hair suddenly strips from my scalp. Shrieks of horror ensue. I still have a random white halo-like streak in my hair. People say they like it, citing Storm and Rogue (attractive, but mutants, nevertheless). I’m not sure about it, but I’m just happy to have hair, especially since hair-loss is NO LONGER AN ISSUE. YES!!

2. My blood counts, red and white, are almost completely normal, according to my complete blood culture. I’M HEALTHY. Considering. Nevertheless, my red and white cells, my lymphocytes and hemoglobin are all within normal range for the first time in several months.

My body has recovered from radiation treatment.

HEY HUMANITY, PLAYSTATION 3 IS HELPING YOU OUT!

(Okay, apparently this is really old news, but hey, I’ve only owned my PS3 for a humble 5 months now.)

Folding@home is a project created by some fine folks at Stanford University in order to simulate molecular behavior, specifically  how human proteins fold. Uh…or something like that.

This vid does a better job at explaining everything:

From what I understand in layman terms, the PS3’s processor is crazy fast, much faster than the average PC, and can basically be considered a supercomputer [edit: when several work together] (I love you, Sony). This helps speed up the folding simulation so researchers can sooner and faster understand how those evil molecules that trigger diseases like Parkinson’s, cystic fibrosis and cancer.

Owners of supercomputers,or more commonly, of PlayStation 3s/regular computers can help out by networking their hardware to the Folding@home folks.

Here’s some info on Folding@home and how to hook up your PS3 to join the cause:

http://folding.stanford.edu/English/FAQ-PS3

Folding@home is accessible through the “Life with PlayStation” application under the network icon on the main screen. Once the software is installed and updated (this took me about 10 minutes to download), you can watch Folding@home go to work.

I just started my account today.

If you go hit the triangle button while on the Folding@home channel, select “Current Channel”, then scroll down to “Identity”. Under this option, you can create a username and join a team.

If you’d like to join my team (TEAMLUM) enter this team number: 167872.

THANK YOU, SONY for making such an unnecessarily powerful, beautiful piece of machine. I’ve always been a bit of a Sony loyalist, so Sony’s unfortunate lackluster sales in the past few years has been disheartening.

Microsoft played it smart by purchasing and developing great game titles exclusive to the Xbox 360, especially multiplayer/online titles like Gears of War and Halo 3. Xbox marketed heavily towards the main gamer demographic: male gamers in between 18-32. Microsoft’s investment in great games with its gamers in mind came at the cost of cutting corners on its hardware. The Xbox 360 console has been plagued by the red ring of death and even more so by its slow tech support, customer service and repairs.

Nintendo invested in a new sort of motion interactivity with the Wii, which they marketed to non-traditional gamer demographics: the young family and women. However, Nintendo really sacrificed in the graphics/hardware department as well, and didn’t bother developing either HD DVD or Blu-Ray technology. Nevertheless, Nintendo put out a truly innovative package that has changed the face and feel of modern gaming.

Sony, on the other hand, had very big plans … perhaps too grand. Sony really put out an excellent piece of hardware, spearheading the Blu-Ray revolution and creating a console that allows room for expansion, improvement, and well…stuff like Folding@home. However, Sony’s vision is a little beyond the average consumer’s needs–as was its price.

Nevertheless, Sony has proven itself a true technological visionary through its use of Folding@home.

To top off all of its claimed social and scientific contributions, Folding@home just looks fantastic. There’s a really cool graphic that shows all the blips where people are running Folding@home all over the world. The east coast is pretty hot right now, along with some pockets of insomniacs like myself on the west coast. Much of Japan and Seoul, South Korea are lit up as well. Possibly one (??) in North Korea? What’s interesting about this whole display is that it is really telling of global affluence as well..huh, maybe that could be the next PS3 project.

In any case, I’m a pretty proud owner of my PS3 right now.

[Thanks, Stanley]

I’m not sure what PS3/SCEA means by this, but hey, I’m down with the cause, and I’m down with SCEA.

This showed up in a google search for PS3. Sadly, there was no explainer when I clicked on the link.

Well…I’ve been in this same room for about 6 days now. 5 spent in solitude now, except for the occasional doctor’s visit, nurses waking me up and taking my vitals, and my family members standing outside.

It’s wearing down on me, though not really in the way that I expected it would. I never anticipated that eating warm parfait and cold bacon is so maddening. The food people can’t bring in my meals right as they arrive because the nurses are the only ones allowed inside my room…so the food just sits there, waiting to be brought in. I bet even solitary confinement food is warmer than the mashed potatoes I had for lunch today.

But gosh golly, television is great. <3 I’ve been watching back-to-back episodes of Law and Order and House, lots of Robot Chicken and other Adult Swim programming (AQUA TEEN!), and even the occasional cable reruns of Full House, Fresh Prince of Bel Air, and yes, Sister Sister.

Since I moved home, I don’t have cable anymore. Dad feels like he shouldn’t have to pay for a monthly service like that. He also didn’t get us internet until 2000. And we were on dial-up 56K until 2005. Now guess what? We’re still using a HUGE house antenna to get TV. We’re in that category of supposedly elderly Americans who STILL haven’t prepped for digital TV and haven’t set up the converter box. Even my grandma has her box hooked up already…

Yes, our household lives in very backward times.

But maybe my dad is on to something. If we had cable, I could and likely would be doing exactly what I’m doing now: watching nonstop TV.

Between TNT and USA, I can watch marathons of House, Without A Trace, Law and Order, Law and Order: SVU, and Cold Case. Talk about a crime drama wet dream. I had the TV on last night from 11am-1am nonstop, without having to search far for something good to watch. I even watched ALL of the programming on Adult Swim. And could have watched it again, but I’m not a big fan of King of the Hill. I’m a bigger fan than before I came to this room, though. Hank’s voice is oddly soothing…

I’m a bit haunted by this one that Oh Dae-su says in Chan-wook Park’s Oldboy. (If you haven’t seen Oldboy, it’s one of the most disturbing yet brilliant Korean films I have ever seen. I recommend it…with caution)

“The TV is both a clock and a calendar. It’s your school, your home, your church, your friend… and your lover.”

TV is familiar. Comforting. Brain-numbing. Sometimes that’s what we need. Sure, sure, it can be unhealthy escapism from reality…but in my opinion, we can’t face reality 24/7 without going absolutely nutters. That’s why we’re wired with an imagination…and now thanks to technology’s ability to make us do even less, we have TV: society’s imagination. I suppose in a sense, it’s the acceptable adult reconstruction of the imagination that they were socially banned from re-entering after completing childhood. Or just our generation’s absolute laziness and inability to go outside, enjoy the sun, and revel in imagination without labeling it childish.

But in any case, TV serves a certain purpose. And it does it very very well.

Television has a special place in our homes, in our minds, in our hearts.

In our homes, the television is often the focal point of family rooms. We arrange our furniture to provide an optimal view of the tube. Stereo systems enhance the viewing experience. We purchase better televisions with advanced technology to better see the moving pictures. To make the experience more real.

Television piques our brains, our curiosity, our social-norms: the original Star Trek is famously remembered (and made relevant again in the wake of the new film) for bringing up philosophical ponderings about the nature of humanity, and even being socially revolutionary with its first broadcasted interracial kiss. Crime dramas make us marvel at the motives of vile actions and rile our desire to put together the pieces to make sense of it all, and somehow fit justice into the equation. Hospital dramas, even comedies like Scrubs, make us consider ourselves at our most fragilest physical states, and to think of death.  Shows like Lost challenge our ability to suspend disbelief, engaging us into a complicated, fantastic world where an island heals souls and bodies and blends the past, present and future.

And we begin to care. We begin to worry about Jack Bauer’s success and well-being. We cry as characters are mercilessly killed off in season finales due to budget-cuts and expired contracts. We become obsessed about the so well-developed characters of Jack, Kate, Sawyer, Locke, and even Ben on Lost and what will happen to them. We rejoice when Jim and Pam are finally together, and when crew members of the Deadliest Catch return safely home from a life so different from ours, with profitable pots of king crab. We sit on the edge of our couches as people die episode after episode, as lives are changed–at least as long as the series lasts, and as characters achieve the impossible–far beyond what we ourselves will ever hope to become.

And therein lies a danger: that we become contented with living vicariously through the characters we love and have let into our lives.

I decided to turn the TV off for a few hours today. Admittedly…after watching an episode and a half of Without a Trace and Law and Order.

I put down the books, the Nintendo DS (the Simpsons game is brilliant!*), the magazines, the compulsive need to channel surf.

I found that I need some space from our dear friend, the television. (After so much television-watching, I had even found that I have favorite commercials.)

My life currently is as least action-packed as it ever has been. It reads a bit like that Paul Auster book, Travels in the Scriptorium, only with fewer interesting visitors. No offense to my family members.

But in spite of the silence, the boredom, the bad food, the hospital smell, the lack of direct sunlight, the painful IV needles, and the harsh reality that I have a crappy life-threatening rare disease that Dr. Gregory House would make snide yet brilliant remarks about, this is my life: the life I get to live, rather than watch.

—

Other thoughts:

- Dramas, especially hospital dramas, have this nasty bad habit of having a montage of all the characters accompanied by a slow, thoughtful song, often something like John Mayer.

- I really like alcohol commercials. They tend to be very well-produced. The Bacardi Mojito commercial is classy, nostalgic, and fresh–with a great wardrobe too. It certainly does justice to the drink. I’m not the biggest fan of Dos Equis but the “most interesting man in the world” commercial is absolutely charming. Heck…even that one Coors commercial (sorry, not on youtube) advertising the new blue mountains indicator on cans is cool; that dart trick would be awesome to pull off in real life. I know it’s CG, but hey, it appeals to my college sensibility.

- * The Simpsons Game is absolutely brilliant. The developers know their TV audience and openly acknowledge the difficulties and gimmicks of creating a show-based video game. In a very meta-videogaming way, they even make it a point to count all the “video game cliches” that appear in the gameplay, i.e. pits of death, barriers that need to be destroyed, etc.  Bart even uses a game manual in order to discover his familys super powers. In one level, Bart and Lisa have to cross a river, Frogger-style. Once Lisa painstakingly crosses, Bart has to cross too, and he whines that the game is old-fashioned. Clever. I suppose that much of the glitches/difficult controls in the gameplay can also be dismissed or excused as the game simply making fun of its own genre. Very meta. Applause.

I haven’t delved too deeply into it, but there’s this one level where you have to save Carl and Lenny from buzzsaws of death (which the game points out is yet another video game cliche), and the two talk amongst themselves about their death. At one point, I’m pretty sure they scream “oh no! now I’ll never know what happens to Charlie and Claire on Lost!” That certainly appealed to my nerdy TV-watching side. Good move. More applause.

[I've decided to post cancer updates on this blog too, in addition to my Facebook notes. It seems a little more permanent here, somehow. Actions on Facebook can be so forgettable.]

Last month was hellish.

I was like an old lady with a broken hip. The radiation I got to protect my iliac crest from fracturing (the tumor was eating it up) made the soft tissue around my hip socket swell up or something. I could not walk or straighten my leg out. This made sleeping impossible for a night, and then I was promptly put on intense pain pills–and liquid–after several visits to the ER and doctor. I can’t drink anymore, but my shot glass came in handy. Liquid morphine tastes disgusting.

I’m able to walk normally now. Though I can’t run. It…makes my butt hurt. I have cancer there too…TMI?

Chemo was no fun, and apparently it didn’t work. Not only did my tumors continue to grow, I got all the possible side effects, except for the nasty skin condition it usually comes with (thankfully). I turned yellow, I felt fatigued all the time (those of you who visited, you know I was in another dimension or something…), I barfed a lot and had no appetite. My body was rendered incapable of healing itself, and I got endless nosebleeds. Horrid. More trips to the ER. Also, my hair started turning color at the roots…showing no sign of turning back to the normal color.

I figure that I’ll either look like Storm from X-men or if the hair loss continues, the Crypt Keeper. Though some comfortingly suggest I’ll pull it off like Natalie Portman in V for Vendetta. Thanks, but she’s got better bone structure than me. And healthier bone marrow, most likely.

On a more serious note, I have a very very aggressive cancer. It’s also very advanced.

Good for it, very bad for me. But hey, if I die, I’m taking the cancer out with me too.

Even more seriously, though, I have to admit that it’s extremely difficult for me to come to terms with what I have. I joke about it, or more commonly avoid talking about it, mostly because I don’t want to consider the fact that this might/will kill me. I accept that fact, but I don’t want the knowledge to haunt me constantly.

A lot of people have been treating me like I’m on my deathbed. Asking me how I’m doing in a really pitiful tone. Offering help when none is needed. Reminding me to think of the future–the far future, after death.

The latter is helpful, but I encourage all people to think of that. The former three…not so helpful. They only serve to remind me that I’m dying. I need no reminding. Especially when I’m feeling so good now compared to last month. But thanks for the concern.

I do not want to spend my dying days burdened by the fact that they are my dying days.

Anyways, I’m trying to prolong those days as much as possible. Since the chemo apparently didn’t work, I’m going to participate in a clinical trial at UCSF: radioactive iodine-MIBG treatment.

Basically, my tumors like MIBG (not sure how to explain what that is), and they absorb it like crazy. The treatment I’m receiving binds MIBG to radioactive iodine, so it tricks the tumors into absorbing both. The tumors will hopefully shrink and die from the radiation.

My doctor, Dr. Fitzgerald (who won a bunch of “Best Doctor of America” awards) says that the goal is remission (but as my disease is really advanced, that’s a very ambitious goal), but the hope is that the tumors will shrink and cause fewer symptoms and problems. Like killing me.

There’s a pretty big chance that this treatment won’t work, but a decent chance that it will. A better chance than chemo will work. I have to be treated with a lower-than-usual dose because my bone marrow has tumor activity, and it can’t withstand so much radiation if it can’t be replaced after the treatment. Complicated situation.

The treatment itself will take place in the middle of May. I’ll be in an isolation room, lead-lined to protect other people. I’ll be there for a week. It sounds like a good place to go insane…There’s only a TV, and everything I bring in must be thrown away before I leave. Radiation contamination, etc. So that means I probably can’t bring in a computer (no internet access, anyways), no PS3, no journal, etc. I can bring in books, but they have to be thrown away afterwards. I hate throwing books away.

Anyways, until then, I’m just (bored) at home, relaxing and trying to catch up on episodes of Lost while drinking Dharma Initiative Beer (really coke/root beer) from Tran Shawn.

To be perfectly honest, I hate the situation I’m in.

I’m dying. No matter what I do, the truth is, I’m dying. This cancer will most likely kill me, a few years down the road, maybe sooner.

I’m too young for this, I keep thinking. I go to the infusion center where people get IV Chemotherapy. Everyone in there, with a few exceptions, has grey hair or no hair. I’m definitely the youngest.

I feel myself slipping away daily. The things I used to be able to do are no longer options.

I can’t walk well. The radiation to my hip caused such pain that I had to sit and get assistance walking around the house. Now the joint is giving me problems, and I can’t seem to walk properly.

I get constant fevers.  High fevers. Fevers that break in the middle of the night and cause me to sweat over my entire body and wake up several times.

I get aches and pains.

I have no appetite. Eating is difficult and even the foods I used to enjoy make me gag. My digestion is even worse.

Amidst all of this, it’s difficult to find joy. I feel very alone, even though I know so many people are thinking and praying for me. My parents are always with me. My dad retired early so he can spend time with me.

Yet joy is hard to find. I battle with God. I ask Him, beg Him to take this lot away from me. To spare me.

But He keeps reminding me that my joy should be in the fact that He has already spared me. He has saved me from my heavy and numerous sins and the consequence of eternal death. He has done so by sacrificing His own Son in order to replace me, in order to give me something I do not deserve. Now I have eternal life, a life unlike this one of suffering.

That is where my ultimate joy should be from.

But it is so so so hard to remember this. To find reassurance. To find comfort when I am suffering so much already. I thought I would have more time. I thought maybe I’d have one more good year, where I could travel, see more of the world, learn more, graduate.

I have dreams that are crushed by the simple death sentence cancer has given me. I had dreams of getting married, of becoming a photojournalist, of having children.

God, you know my sorrow. Please grant me peace.