Hey all,

Just an update from Janet. She’s done with another round of chemo now. Just a couple more to go. Though she did this last one as an outpatient, it was probably tougher than any of the rounds before as each shot just put her more and more in pain. She’s resting now, recovering, and holding strong.

-James

My throbbing, painful headache is temporarily gone! So is the nausea! So is the vomiting! I can eat now without feeling like I hate food! I can eat more now! This is incredible! I want to do a somersault in the pouring rain outside! I better not jinx this though. I’ll just be grateful and quietly relish the hours that my body isn’t under extreme duress from my moody, chemotherapy soldiers.

GOODBYE INTRATHECAL CHEMOTHERAPY! (a.k.a. spinal taps/lumbar injection)! I finished my last 6th one this week. Since my type of acute leukemia is notorious for spreading to the brain, I was assigned a regimen of 6 separate doses to PREVENT this fatal event from occurring. According to UCSF, this is called CNS Prophylaxis:

“ALL frequently can recur in the spinal fluid (the fluid that bathes the spinal column and brain). To prevent relapse at this location, chemotherapy must be infused directly into the fluid that bathes the spinal column. This is done by inserting a needle between the vertebrae of the lower back and infusing chemotherapy directly into the clear spinal fluid, which is called intrathecal chemotherapy. Patients are routinely given 6 to 12 injections of intrathecal chemotherapy to prevent recurrence of ALL. More injections may be necessary if leukemia cells are detected in the spinal fluid. Most people complete intrathecal therapy within two to four months of starting their treatment. Headaches and nausea are the most common side effects.”

That’s right, I am done with that forever. I hope. A note to other cancer patients undergoing this: if you get a headache after lying down for 30 minutes, try giving it an hour. I know, it sounds kind of long to be laying in bed, but you can grab an ipod and listen to some music or read a magazine. Sip some apple juice. Take a nap. Before you know it, you have already decreased the chances of a severe headache that could potentially last for days, weeks… also, caffeine might help so try drinking a Mountain Dew or Coke. Make sure you’re hydrated with fluids. I am simply regurgitating tricks and advice from my doctors.

GOODBYE SERGEANT ASPARIGINASE! You have been relieved of your duties and I will be presenting you the Purple Heart of Honor. What did he do that was so great?

“All cells need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot. Asparaginase breaks down asparagine in the body. Since the cancer cells cannot make more asparagine, they die.

When asparaginase breaks down asparagine it is broken down into 2 chemicals, aspartic acid and ammonia.  The neurologic side effects seen with asparaginase (such as, confusion, excessive sleepiness, agitation, disorientation, or coma) are related to increased levels of these chemicals circulating in the body.” (Chemocare.com)

I was quite fearful every time I received the injection. I would ask my nurses if they could stay with me for a little longer after the injection was given, because it’s known to cause immediate reactions within 20 minutes – like a sudden difficulty in breathing normally. I was spared through nearly 10 trials, because even though you didn’t have a reaction with the first trial, you could still get a reaction later. You have been really kind to me Sergeant, and I hope you’ll be kind to other patients as well by reducing the accompanying side effects to their bodies.

I still have a long road ahead of me. In fact, as I’m reaching the halfway mark, I just went through the “easy” rounds. The remaining chemotherapy drugs will continue to demand more of me physically. I’m not sure how I will turn out, but I am truly grateful for family and friends who understand me and are willing to put up with this journey.

SIDE TANGENTAL THOUGHTS ABOUT HAITI (please don’t read if offended by some references to God)

While I was bed-ridden for the past week (like literally my younger brother came home for the long MLK holiday weekend, and I barely saw him much because I spent 17 hours in bed on average each day), I told God that I was in a LOT of pain. Simultaneously, I was also ashamed of whining about my side effects when I learned that a struggling government marred with corruption and ill weather (hurricanes) crumbled into pieces after a devastating quake. I wanted so badly to launch into a helicopter, use my International Development Studies background, go to the scene of action with sweatshirt arms rolled up ready to pull people out from being crushed, finding them shelter, oh HELL — bring my own Brita Filters from home or a boiling point to get some clean water, use my decent French to help language communication, distracting little kids with stuffed animals for them to hold … but there was nothing I could do except maybe pull out my red envelope money from last year’s Chinese New Year’s and cross my fingers hoping that non-governmental organizations like Oxfam and Doctors Without Borders would utilize the incoming U.S. aid with expediency and honestly.

And then I told God, it’s okay, go help them first. 200,000 dead. They need it more than ever now. It was funny, because a close friend called me up and while I was talking about this, she told me: “Um, you do know that He is Almighty, right? He can literally be at both places at one time.” And we laughed. I had forgotten about this, but in a way, I don’t think I would have minded if God was somewhat limited with His hands, his heavenly staff stacked with a bunch of prayer requests for Haiti, that he had to put my wishes on a secondary list. Aw heck, I even started to forget about my side effects. It’s been raining a lot on the West Coast, and there are times when I wonder if the sky is grieving for what happened in this fragile, but beautiful Caribbean country.

If you are poor like me (read: college student, unemployed, or has cancer) and can’t donate much money to Haiti, you CAN click-to-donate for free (everyday!) at http://www.care2.com/click-to-donate/haiti/

Viva Haiti! Viva Survivorship!

There have been a lot of entries formulating in my head that I’ve been meaning to pour on paper. But I’m so tired right now. This is going to be one of those “get-straight-to-the-point” posts. My sentences may not be complete or grammatically correct.

Some thoughts:

- Thank you so much for your birthday wishes. I live to see my 23rd birthday! I don’t think I need to say anything else.

- I am nostalgic for the days when I used to run around UCLA with a coffee mug in one hand, a backpack that weighed 25 pounds filled with my binders/textbooks/laptop, a blue teacher’s bag filled with tutoring lesson plans strapped on another shoulder, a couple more books in my hand, and a copy of the UCLA Daily Bruin newspaper under my arm to stay aware of campus events. I was a walking disaster, but that’s how busy I was …. running around like a little bird from building to building trying to pack everything I could do in one day. And when I mean nostalgia, I mean to say, I long for those college days when I felt as if I was being trained for the real world in an experimental setting … any mistakes were easily forgiven (not too big of a deal): i.e. not scoring high enough on tests, coordinating meetings, having good turnouts at events planned

- Today I broke down in my friend’s car out of nowhere after hearing someone received a bone marrow transplant successfully. I think these were tears of joy though and extreme happiness, though quite a weird reaction, you’d think? It was all very sudden too, like a switch in me just turned on, and I was completely overjoyed.

- Did I say I was exhausted? Fighting nausea non-stop. I’m loaded with anti-nausea medicine, but have been vomiting on the occasion, and that’s not suppose to happen with these powerful meds. This doesn’t usually happen with the current round I’m in — aspariginase and vinchristine. Round 4. I’m halfway there. At most, I felt fatigue, jaw pain, and muscle aches. A nurse practitioner reminded me that the rounds aren’t mutually exclusive; they build-up as I go along, so by the time May or June 2010 hits, you can bet that I will be pretty OUT OF IT.

- It SUCKS to be extroverted and sociable … with leukemia. The isolation KILLS. The cancellation on seeing friends at times I had made commitments to beforehand makes me feel so FLAKEY. I NEVER stand any one up, and feel like I have to apologize so much for having them to be flexible with whatever my body is feeling that day. Lots of guilt. Lots of it.

- I have been bed-ridden for the past few days. I sleep at odd hours, just whenever now. Doesn’t care if the sun is out, I can probably take a good nap and lead myself into REM sleep. I also stay bed-ridden sometimes because when my head is positioned horizontally along the bed, my headaches don’t hurt as much. It must be the 5th lumbar puncture I got during the hospital early in the year.

- It’s not depression I’m fighting. And I’m not in denial either. I actively seek out help when I need it. But there are days when I wake up with a dim blue sadness, because the days seem longer than I had expected. I feel very lonely and am finding it hard to readjust to more introverted activities or hobbies. I crave and seek human contact from my personal world. To remedy this, I already made lists of ways to get myself out of these blue moments: calling a friend at least once a day, visiting a park for fresh air, indulging myself in popsicle sticks and chocolate without a care in the world (except that I’ll brush my teeth afterward)…

The key to fighting what you may think could be an onset of depression or just the plain blues from time to time is to allow yourself to feel sadness when it hits you, but not to let it dip so low to the point of no return. I think that’s what gets people in trouble often. Feel it, cry, vomit all those emotions out, then move on. Pick yourself back up.

All right, another wave of nausea hits. So tired that it seems like a truck hit me. Or a small car. Very dizzy, headache, nausea, jaw pain, wah, grumble, complain, complain. I can’t spend more than 15 to 20 minutes on my computer without the desire to purge. Will write again soon. Should try to use my time wisely when I have peak moments of energy.

Conversation #1

Me: Mom, I wrote down 20 things on my to-do list today. It’s nearly midnight and I’ve only accomplished three. I feel so UNPRODUCTIVE AND USELESS. Plus I feel so lazy all the time and tired. *wah, wah, grumble, grumble*

Mom’s response (translated from Chinese): “You know, if you had been able to accomplish all 20 in one day with ease, people would really question whether or not you had leukemia in the first place. Also, please, go to sleep. You have a compromised body now doing insane things and it’s not normal anymore like before.

Conversation #2:

Dad (translated from Chinese): “You know, Janet, if only you concentrated on your health and recovery 150%  just like the way you took 24 units at UCLA in a quarter over the unit maximum.

Me: *rolls eyes like a 16-year old tween, but secretly inside I’m thinking: “Ugh, crap, he’s right.”*

The scoreboard of witticism and wisdom when you hate to admit that your parents are right sometimes: –

Me: zero. Parents: two.

I treasure my relationship with them, even though we reach tensions nearly every day. My mother and I are like cross between Lorelai and Rory Gilmore from “The Gilmore Girls” (in which I am Rory and she is Lorelai. She has a youthful optimisn and energy about her, while there are days when I’m just kind of bland…) and a chapter that comes out of Amy Tan’s The Joy Luck Club. My father and I are pretty relaxed together and think very similarly, but he’s very disciplined in his lifestyle and expects or hopes that I will learn from him. Little arguments run quite often with them. There are days when they will drive me INSANE. Things have to be completely negotiated quite thoroughly. I struggle to use my limited Chinese language to convey or express how I feel, and it feels shameful for me to do it better in English. This sounds stereotypical, but it’s true: our tensions are often manifested from the “East meets the West” collision. I’ve also reached the cusp of an age where I truly desire complete independence as many young adults. What I’ve found most helpful though was to maintain all channels of communication open. All families, no matter how neat they seem or well-poised they appear, are dysfunctional in their truest form (maybe in various ways). And this isn’t nearly a bad thing — we’re all just one big crazy family. And even though they drive me crazy, my parents are my mentors – my best friends, the loves of my life, and I will buy them a big-fat-nice condo somewhere when I have a decent job. Or an environmentally efficient car. Whatever the hell they want. I will shower them with plenty of materialistic things to make their retirement a complete vacation. I don’t want them to ever have to work again.

At the end of the day, what brings us back together and keeps us tied (and perhaps even sane) is that there’s a reciprocal, unconditional love that will never burn out like many other different types of loves. Especially when it comes to fighting cancer, these bonds are magnified ten-fold, or if you want to talk nerdy, it’s love^infinity (yeah, exponents!)

I have to go: they are lecturing to me again. I have about 50 lectures a day with subtle life-lessons sprinkled in them. 143, Mom and Dad. You too, little brother.

Your typical dysfunctional family.

“Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll
I am the master of my fate:
I am the captain of my soul.”
- Invictus, William Ernest Henley