the day 100,000 people died

i was sitting in one of the teal recliner in the dana-1 infusion room receiving a transfusion of blood and platelets, when watching my neighbor’s tv tuned to cnn, it was reported that a magnitude 8.0 had just hit southwestern china.

in a moment, you are buried underneath your home–a former refuge, a former life, now a sarcophagus that you lay in death or dying silence among those pictures, those knickknacks, those memories and scents of hope unbound. shattered. entombed.

how could we have prevented this? when we died, did the earth stand still? and did they sing our achievements?

that was the turning point. acceptance. and a prayer for the 100,000 that passed. i will die soon according to God’s grace.

round 2 and a sutra to silence

last year on this date i started my second round of high-dose chemo. the first round was very easy, and i came into the hospital as a brash veteran of chemo-therapeutic affairs. i was getting the hang of how my body would react, even to the point where i could detect the slightest beginnings of nausea and could avert the “end-state” by calling for some atavan. i felt that things would be routine.

five days later, i left the hospital so weakened that my voice was a barely-audible whisp. i ran a high-fever throughout the week, and i was accidentally given a drug that only a month before caused my airways to close. chemo eviscerates, med students (can) kill.

nothing was vocalized–not even my thoughts–which were in some alpha state most of the time: the approach of death set to silence. don’t struggle, just watch.

what happened to day 0?

i’m reading Don Quixote these days, and i have to say that Cervantes is one annoying dude! why do i even put up with his crap??–random asides, chapters that meander, etc. but what’s MOST frustrating about Don Quixote are the story-lines that are abandoned at whim. where does he get the nerve to leave me hanging like that??! oh…hmmmm…

[quick change of subject]

i went in for a blood check on wednesday, and i’m STILL VERY normal:
white counts- 4.9, red counts- 41.9, platelets 184, and NO blasts (i.e. leukemic cells). the fears of remission are abating, and as i draw closer to my 1 year (post-treatment) anniversary, i find myself settling into a normalcy…in other words, my world feels safe.

i mustn’t allow myself to linger in this safe world for too long because bleaches out all of those extraordinary experiences that i recently went through. this safe world makes me forget about the GIFT of cancership: why be normal when you were almost dead?

its best to be unsafe. (a little)

preparations for Day 0

this day last year was the “prep” day. my doctors were in a rush to start my treatment as soon as possible–in fact, they set Feb. 1st as Day 0. having just arrived in boston the day before, i wasn’t sure if i was ready or not, but i was already “on track” and everything proceeded systematically. first, i had to decide whether i wanted to be in a clinical study or not: “you have 18 hours to decide this potentially life-saving/death-inducing decision…no pressure”. i decided for the standard treatment, aka the “royale w/ cheese please”. why? well i don’t know!–if you had 18 hours to decide whether to experiment with your life or not, which would you choose?

second on the agenda, preserve my sperm b/c history and posterity depended on it! 15 minutes into my first meeting with Dr. S* (boston onc.), he asked me: “you want children right?” how does one explain that my precious swimmers would one day save the universe…so i just said “yes”. he then explained that there’s a 5% chance that the treatment will make me infertile (an argument that i frequently bring up in my appearances on judge judy). so the solution is to “bank” them. which reminds me, that i’ll need to check if i’m infertile or not–i’d just assume that with my fantasies of women rubbing themselves with goat fur intact, that everything is “normal”. ok def. on the todo list.

but if you’re wondering about the mechanics whereof, whereon, and etc, let me assure you that there is NOTHING sexier than to be deathly ill–weak and tired, and asked to “deposit” oneself (plus mutations) into a tiny piss-cup. NOTHING! but IT was done.

after the “banking”, i told the white-haired receptionist that i was “done”. i was immediately shuttled back to my room for a bone marrow biopsy–i guess it was a little of the ol’ “GIVE and TAKE”

my first bone marrow biopsy didn’t hurt as much as i expected it to. in fact, Dr S* complemented me on my strong bones–so please imagine me with my wide-grin..ass in the air with needles poking out of said ass (well, actually ass-bones).

so last year i was “prepping” for the day ahead. my head was in a whirl–how else would i have agree to such craziness?! the next day–Day 0, was what i was REALLY focused on. it was when the “fucking around was pretty much over” (to borrow a quote).

boston bound

last year on this date, just a few days after my diagnosis, i woke up with a sense of excitement: during my pre-dawn meeting with Dr. D* (my oncologist while i was still in virginia), i told him that i wanted to be treated at the Dana Farber Cancer Institute in boston, and asked, a bit sheepishly, if i would be strong enough for the flight–i suppose i was expecting Dr. D* to veto my plans of escaping to that “greener” pasture. i didn’t exactly like my hospital stay in va.

But Dr. D* was very excited about the idea and he was extremely supportive. he mentioned that i would need the support of my family as i face the trials of the next few months. in retrospect, i realized that i was perhaps the youngest case of AML Dr. D* had ever seen. he was a regional DR and AML typically strikes the old. and i suppose he took sympathy on me–perhaps it would be best to go to a major institute like the Farber where cases like mine are more typical, and chances of survival are higher; treatment regimens more informed. who knows.

over the 2 days since i was diagnosed, my family was working non-stop to get me to the best treatment centers in the north-east. everyone gets their credit here: first jill with mass health; christy and mike tirelessly making arrangements at the dana farber; and nar for wrapping up things in virginia…and scott–well, he was on his way over from china. the truth is, whether Dr. D* agreed to it or not, one way or another i was going to boston–i felt PULLED, as if it was EXACTLY where i needed to be.

Dr. D* wished me good luck, and said that he will help in making sure that the records/tests are all transferred to the Farber without delay. we were all racing to get chemo started as soon as possible.

and that morning, i felt the urgency of the race: after the meeting, i called my family to tell them that i was cleared to fly to boston.

8am: nar booked a 11am flight from national airport to logan; my sister made arrangements to pick me and dad up.

8:30am: i asked my nurse to make a photocopy of all of my records–i would carry them directly to DFCI.

9am: my parents helped me pack up my things in the hospital room; i
showered for the first time in 3 days.

9:30am: i’m given a flimsy surgical mask to prevent catching anything on the airplane…in retrospect, it didn’t do anything. my mom and i made a mad dash out of the hospital to the lobby, where my dad was (supposedly) waiting for us. i must have really wanted to leave va and that hospital b/c i sprinted pretty fast. after reaching the lobby, i felt very lightheaded and out of breath–the realities of my disease were just dawning on me. of course, my dad was late.

10am: we returned to my apartment in va to get some things

10:30am: at national airport, our boarding passes were printed. the man marked both of our tickets with 4 red Xs. when we approached the security checks, we were “selected” for a “random check”–i was asked to remove the surgical mask i was wearing–i explained that i was very sick, and needed it–it was the first time i told random strangers that i had cancer. they eventually let us through. in retrospect, i guess after 9-11, anyone buying tickets just 3 hours before will automatically get 4 red Xs!

10:45am: we boarded. i tried to hold my breath as much as possible, praying that i don’t catch anything. everytime someone coughed, i held my breath. actually, its a reflex i’ve built up, and i’m pretty good at it now.

11am: takeoff never felt so promise-filled.

i arrived in boston very hopeful and excited. i checked into the hospital–telling emergency room clerk that i had AML–it was the second time i told a stranger that i had cancer. she immediately admitted me into a room. so note, if you ever want to jump the line in the emergency room, just get cancer!

the rest is history

::break::

i’ll be starting my job soon, so yesterday i drove into boston to look for apartments. i’ll be looking tomorrow as well. of course *this* history is looping in my mind. and as i enter into boston these days, it feels so good–just like it felt a year ago. i feel like i’m coming to where i *need* to be. these days, boston feels exactly right.

reflections on a new year

i have some news: its been 4 months since i finished my treatment, and my blood remains completely normal! there’s a roughly 30% chance of relapse in the first 6 months after treatment, so i’m not out of the woods yet, but so far, so good!

in these 4 months, my platelets have been a bit on the low side, which prompted my oncologist to make my checkup every two weeks instead of every month. but the last two checkups showed normal platelet counts: 151 on dec. 24th, and 178 last week (jan 21st)–the normal range is 155-400. for those who are interested in esoteric stats, my white count was 5.3 (normal: 3.8-9.2) and my hematocrit was at 43.4 (normal: 38.4-48.2). so health-wise, things are very normal.

this is also the one year anniversary of when i was first diagnosed. i’ll definitely have something more to say about that, but for now, i’ll just talk about how the images of that day loop in my head: in the past year, those images have often popped into my head unexpectedly, and in an uncoordinated manner. today, they loop in sequence and with a haunting power: 1. how we woke up before dawn to go to the emergency room; 2. its leukemia …; 3. my family leaving for the night; 4. george bush giving the state of the union address; 5. the most alone i’ve ever felt.

these images remind me that this is my second chance.

and as i’ve said at the outset of the post, i have news: i recently accepted a position at the Dana Farber Cancer Institute (yes, the same hospital that i *still* go for monthly checkups). i’ll be writing programs that will help research groups around the world find the genetic causes of various cancers (among other diseases, e.g. autism). i am so *honored* to have this opportunity–this IS a chance of a lifetime. and i am so *excited* to make my best contribution!

I told my oncologist (who had a big part in helping me get these positions) about the news and he said that its a bit “ironic”. i retorted: “27 and leukemic is ironic–THIS is poetic!”.

one year after cancer, i reflect on how BLESSED i am! YATTA!

Happy (chinese) new year!

floating to the ninth

at about 9 minutes 15 seconds into the 3rd movement of Beethoven’s 9th, the world starts to float. for the remaining 7 minutes of the movement, we come to understand the profound peace that our favorite icon of frenzied genius knew and had. it is against this backdrop that i start this meditation of sorts–after all, every good wine deserves its bit of cheese.

today, i read a nytimes article by David Brooks titled, “In Defense of Death”. i know that some of you have little regard for David Brooks (ia* thinks he’s a d-bag), but the piece stands on its own: its beautifully written. its beautifully written, of course, because its actually a eulogy for John Neuhaus, a catholic priest who recently died of cancer. as i read the article, i was struck by the resonance that Neuhaus’s life had with mine–and as i imagine, the lives of other cancer patients as well.

toward the end, Brooks describes how, after a near-death experience, Neuhaus gained an “indifferen[ce]” toward death. but indifference is the WRONG word because it evokes a sense of nihilism. if you read neuhaus’s original article, the beautifully written “Born Toward Dying”, you’ll come to understand that “indifference” is not meant in the nihilistic sense at all, but rather as a certain “peace”/”insight” with or toward death (for the lazy):

We are born to die. Not that death is the purpose of our being born, but we are born toward death, and in each of our lives the work of dying is already underway.
…
…maybe I was going to die and maybe I was going to live, and it was all quite out of my control. That was it, I think: I was not in charge, and it was both strange and very good not to be in charge.

facing cancer made me realize that i have no control over some of the most important things to me (e.g. my health, my LIFE). but i gained a tremendous PEACE in realizing how helpless i actually am: i see that God is at the center of all things that are important to me. and i view death with that same indifference that Neuhaus spoke of: the profound peace that makes the world suddenly start to float.

What to do when waiting in the freezing rain.

What to do when waiting in the freezing rain., originally uploaded by Len Taing.

Azure Tampa

Azure Tampa, originally uploaded by Len Taing.

Tampa is beautiful after all.

the cyst is dead

post-cyst, originally uploaded by Len Taing.

i had the surgery to remove the cyst on the back of my leg on monday. everything was routine and painless (an odd experience for someone like me). i laid on my belly for about 30 minutes, and was wide awake during the whole procedure. the only unnerving part was when the surgeon cauterized the bleeding, and i smelled my own burning flesh wafting toward me (conjures up smells of burnt porn rinds). magically, i felt nothing.

the surgeon said that the cyst was HUGE! and that he had to cut pretty deep to get it all out. as a result, he said, i’ll have a permanent divot in my leg to go along with the awesome surgery scar. today was my first chance to see the site myself, and overall, i’m pleased with how it looks–the site doesn’t look that big, and everything looks pretty normal. of course, the bandage is still on, but i’ll take concave (divot+scar) over convex (cyst) any day. i guess these are the perks of having a plastic surgeon do the procedure.

i have to keep my leg under compression with the same wrap that they use on horse legs (i think its a classic plastic surgery trick to promote healing), and in about three weeks he’ll remove the stitches.

i asked if it was cancerous–and he said that it looked like a cyst to him. so there you have it people, it was just a big ‘ole cyst.

in a completely unrelated note: he prescribed vicodin as a pain killer, and being a fan of House MD, i looked forward to partake. but i have to say that i’m pretty disappointed in its effectiveness…is house popping sugar pills?–can some corroborate that vicodin actually works?

01-28-09 update:
it took longer than expected to heal completely, but the site looks really nice! (i might post a picture, but i sense that you guys might be sick of looking at pictures of the back of my leg). the scar is about 1 cm long, and is barely noticeable. again, let me repeat: if you are going to have any surgery done, you should get a plastic surgeon to do it! the dermatologist that i went to in june said that the scar was going to be 6 cm long. 6 cm vs 1 cm–not that i care, but i’m really amazed at how skillfully Dr. L* carved up my leg .

so after the surgery, i think that Dr L* (accidentally) severed a nerve–and so there was this dead spot on my leg where i couldn’t feel anything. i told Dr. L* about it, and he said that i may regain sensation in that spot. after showering one day, i dried off my leg, and i felt this strange sensation: my leg hairs were hurting! the next day, my leg hairs stopped hurting, and i got sensation back in the dead spot! (i think that leg-hair nerves were recruited to take over) neural plasticity rocks!