waphle

Reality

Living in the moment isn’t a choice; it’s reality.

Happiness is not the sum of your life to date or the value of what lies ahead. It is how you feel right now, even if in response to the past or future.

This moment will never be again, no matter how hard you hold on.

This is the physical reality. The psychological reality. The everything-al reality. It is not necessarily some warm fuzzy concept or a carpe-diem-esque call to action, it simply is.

It’s just comes down to whether or not you accept that reality.

And when you have, what do you do with it?

a sense of closure, a new beginning

It has been almost a year since I last posted. In the meantime, my seventh blogging anniversary has passed. I have been inspired to give regular blogging an attempt again by many close friends who have all recently taken up blogging ventures of their own, so let’s hope this is a new beginning.

But first, a sense of closure. I have written the rest of this post many times in my head over the past few months (and the first half of it has been a neglected draft for three months) — a post to cap the bone marrow (non-)donation experience. It will never say what I want it to say, but here’s my best attempt.

The cancellation of the donation was at first mainly disappointing and frustrating. There is no doubt I felt deep concern for the recipient, who I can only hope no longer needed the treatment, rather than no longer being able to handle it. But I did not know this person, did not know his name, did not know his pain - really only a smidgen more connected to him than any other stranger. The disappointment and frustration was much more visceral. To feel fate offered some modicum of power, only to snatch it away and laugh at the last minute. To be so close to feeling like a true hero, feeling like, without a doubt, my life could finally, genuinely make an actual difference in someone else’s life. So close to having my existence infused with meaning in a way I strive for every day. It is a feeling not easily forgotten nor gently endured.

I came across a quote by George Bernard Shaw during this process that spoke to me. Here it is in its entirety (emphasis mine):

“This is the true joy in life: the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature, instead of a feverish selfish clod of ailments and grievances, complaining that the world will not devote itself to making you happy. I am of the opinion that my life belongs to the whole community, and as long as I live it, it is my privilege to do whatever I can. I rejoice in life for its own sake. Life is no brief candle to me; it is a sort of bright torch which I have got hold of for a moment and I want to make it burn as brightly as possible before handing it on to future generations.”

Looking back it is hard to imagine I ever had to mull over the decision of whether or not to donate. What an incredible privilege it is to give.

Thank you to all those who gave me your love and support. It is no hyperbole to say that it was, at times, overwhelming. I have an unfortunate habit of forgetting, or having insecurities about, the strength of my relationships with those around me. But throughout my donation process, I was reminded constantly of how amazing the people I am so lucky to be able to call my friends are.

Final marrow donation plug: Right now, thousands of patients and their families are searching and hoping for a match. Find a registry. And donate blood while you’re at it. Then spread the word.

And now… welcome to my new blog. I’ve migrated to tumblr (for now, at least) in the hopes that it will compel me to post more. I’m embracing the spirit of focusing purely on content - as embodied by this, the most minimalist blog theme ever (until I get bored of it - probably very soon). Hope you’ll stick around.

The day that wasn't

My Outlook and Entourage reminders have been floating on my screens all day, reminding me of my “Bone Marrow Donation” appointment. It’s a little surreal to think I could have been in the hospital this morning getting my bone marrow “harvested,” and by now it would be on its way into someone else’s body. That didn’t happen due to some hiccups - a dozen insignificant little factors that conspired to change the course of this significant process. At the moment, I’m waiting to hear when my donation will be postponed to, a decision rightly left to the patient and his/her doctor.

In the meantime, thank you to everyone for all the support and concern. I hope you’ll take the opportunity to register to be a bone marrow donor as well. The more I learn, the more I’m compelled to evangelize this cause. At any given moment, thousands of patients and their families are searching and hoping for a match, essentially their last hope. You have a chance to be that last hope and all it takes is a cheek swab. And if you match, you will be giving someone a shot at beating his/her cancer in exchange for a little bit of inconvenience. 60-70% of donations are non-surgical (see: PBSC) and even if surgery is involved, all you have to face is some discomfort. As my friend over at Heal Emru puts it - “Would you pull someone out of the path of a moving car if you knew you would not put your own life in danger? What if you were saving someone heavier than you and you fell backwards so they fell on you? You’d probably feel sore. Would [you] still do it?”

Find a registry. And donate blood while you’re at it. Then spread the word.

That tickles!

Today I:

• Got my first hospital wristband ever!
• Tried my best to stay calm as I had 100 c.c. of blood drawn. Needles make me very, very nervous. I was taking deep breaths in and out – the nurse asked me if I was meditating. Then I was told I was a “trooper,” as if I’m 5 years old.
• Peed in a cup.
• Got a prescription for Percocet. Yum yum.
• Met one of the doctors performing the “harvest.” Her name is Dr. Donato. Seriously. (Domo arigato…)
• Was reassured I would feel nothing during the surgery (I’ll be out cold) and that the soreness afterwards would feel like I “fell hard on ice.”
• Completed something like 50 pages of paperwork. Probably signed over all my legal rights and a kidney or two.
• Got a chest x-ray.
• Got an EKG. Giggled like the little girl I am when the technician applied the electrodes. At one point she said “you’re sensitive aren’t you” and intentionally tickled me some more. Can I sue for harassment now? Or did I sign away that right too?
• Got chauffeured to and from Hackensack University Medical Center in Lexuses (Lexi? Lexera?). Seriously, doesn’t DKMS have better things to spend money on? Like… say… saving/extending lives?

In the next episode… Harold has to donate a unit of blood! Will he survive? Or will he pass out? What flavour juice will he be offered? Tune in next week to find out…

‘Tis the season for giving…

Hi everyone.

I’ve finally revived my blog because something important is coming up that I wanted to keep everyone informed about.

For those of you who don’t know – in less than a month I will be donating bone marrow.

I want you to know everything you want to know, so I will be posting and twittering regularly and have attempted to answer many frequently asked questions below. I hope this will not only keep you satisfactorily up-to-date on what’s going on, but also help you make the decision to register to be a donor and potentially donate if the opportunity arises. If you don’t feel like checking back regularly, you can subscribe to this blog via email on the post page at the bottom of the bar on the right of this post.

Here we go…

The rundown:
Sometime last academic year I joined the donor registry via a cheek swab and was contacted in September about being a possible match for a 9 year-old patient. I had my blood tested and have since been confirmed as the best match. This coming Tuesday, December 2nd, I will be meeting the doctor performing the surgery and getting a physical examination. If all goes well, I will be donating bone marrow on Tuesday, December 23rd at the Hackensack University Medical Center in New Jersey (according to the ever-omniscient Wikipedia, the hospital’s “Cancer Center’s Adult Blood and Marrow Stem Cell Transplantation Program is one of the top eight in the United States.”)

How do I join the donor registry?
You can check the National Marrow Donor Program (NMDP) website to search for donor registration drives near you (many, like the one I registered at, can be found on college campuses) or, if you’re feeling generous, to purchase a registration kit. A Facebook event search for “marrow” often turns up many results too. If you do join, you have absolutely no obligation to do anything if you are found to be a possible match.

What’s the actual surgical procedure?
There are two possible procedures for extracting stem cells. The majority of donations nowadays are via Peripheral Blood Stem Cells (PBSC), which involves a medication that draws stem cells into the bloodstream to be filtered out. The second is a surgical procedure (which comes to mind when most people think of a bone marrow donation) that involves a hollow needle being inserted in the back of the pelvic bone via small (approx. 1/4 in.) incisions in the lower back to collect marrow directly from the bone.

The second one is the one I will be undergoing – a decision the doctors have made in the interest of the patient. My surgery is scheduled to take place in the morning, and I expect to be out of the hospital in the afternoon.

Won’t it hurt like crazy?
Well… most people tell me it will. In fact, the first thing I hear after mentioning I’m donating bone marrow is more often than not about how painful the experience will be. No one I’ve actually spoken with, though, has actually experienced it. I will be anaesthetized during the actual procedure, of course. After that – I’ll try to keep you updated on how I’m feeling and maybe one day you’ll actually have an evidence (albeit anecdotal) based comment about pain for someone who is doing the same thing!

Who is the patient and what disease does s/he have?
I have no idea who the patient is and may never know. The patient and his/her family may choose to contact me a year after the procedure – until then, all contact has to be anonymous and no identifying information can be shared. I do know that the patient is 9 and has Acute Lymphoblastic Leukemia (ALL). My basic understanding is that it means the bone marrow is making abnormal cells that rapidly grow and crowd out normal blood cells and platelets. I also believe that a bone marrow transplant can be risky for the patient and is often a last resort.

How are you feeling?
I’m feeling fine, thank you. Actually, at this moment I’m really calm and rational about this. I think I may start freaking out just a bit a day or two before the procedure (or “harvest” as they sometimes so tenderly call it). I’ll keep you updated on that! I’ve never been in a hospital as a patient before, and the only surgery I have ever had is a root canal, if you even count that.

My question wasn’t answered
Feel free to ask me more by commenting below, emailing me, facebook messaging me, calling me, etc. Otherwise, you could check it out yourself online with these helpful resources:

• National Marrow Donor Program (they manage the registry)
• DKMS (I registered through them)
• This informational packet I got called “Now That You Are A Match” [PDF]
• And, of course, the Mayo Clinic’s page on donation

Thanks for taking the time to read this post! I look forward to keeping you updated on this. All relevant posts will be tagged “marrow donation,” so you can filter for those specifically using that link or by clicking on it in the tag clouds to the bottom or right of these pages.

Happy holidays everyone!

erring on the side of caution

I am a paradox. Of course, everyone is a paradox. Some of us put that statement forth as if it is something remarkable, a unique epitome of sorts. I can only imagine the number of college application essays/personal statements that include that sentence. We are all paradoxes - the world would be a strange place if personalities were black and white, if extroverts were not sometimes introverted, if optimists were not part-time pessimists.

All that aside - the paradox I am contemplating today is the one between caution and spontaneity. Popular culture (not in the Angelina Jolie sense) tells us that we should learn to live in the moment. Carpe diem, we proclaim. And I like to believe incarpe-ing the diem too. Spontaneity is actually something I’m pretty good at. And I’m hardly one to pass up something fun despite the fact I may have more important tasks at hand. Yet, at the same time, I’m a curiously cautious creature. I live my life as if I am under constant scrutiny and will face greater scrutiny in the future. As if, one day, I will be someone famous (once again, not in the Angelina Jolie sense - just in terms of being “of note”) or infamous, and I need to begin managing my image now.

Take marijuana. (Obvious joke here, insert it yourself please.) Now without getting into what I believe about the moral, ethical, legal, health, etc aspects of consuming it - a significant part of me is reluctant to consume it because I want to know that if I am asked, one day, if I have consumed marijuana before, I can honestly say no. It is actually pretty ridiculous when I think about it, to worry about how something like this may affect me fifteen years or more in the future (and the chance of it actually affecting me is pretty slim). But I can’t really get it out of my mind. The hyper-cautious side of me also insists that I stay clear-headed in case of some emergency (this is also part of the reason I never let myself get drunk).

Of course, that is just one minor way my over-thinking things affects what I do. Most of what I do or say, particularly in public, is pretty carefully filtered in my head. Just recently, a friend of a floormate was telling me how she had heard compromising stories from this floormate about almost everyone on the floor - but none involving me. I never really thought about it before that, but I really do go out of my way to not put myself in any compromising situations and pride myself on that. And perhaps it is the reason I don’t blog as much as I’d like to - I worry so much about how I come across (anything published to the internet is essentially permanently accessible) that it is impossible to conceive and write a post in a short period of time.

Looking back at the beginning of this post, it is notable that I went off on a tangent. That was me essentially covering my ass, pointing out a cliché in fears that, otherwise, I’d sound cliché. And here I am, covering my ass by defending my seemingly pointless and tangential ramble - erring on the side of caution.

hap·pi·ness

the definition of happiness is well known by those who are happy, and impossibly elusive for those who are not

goodbye

You said it would be easier this way. If we made our goodbye brief. I suspected you were trying to convince yourself - and I tried to convince myself too. I guess I kind of failed. I couldn’t even bring myself to tell you “I love you” in person for that very last time. And walking away, as I tried to fight back my tears, I knew I was fighting a losing battle.

In a sense I didn’t allow myself to win. I didn’t allow the goodbye to be truly brief. I sat down at McCafe after leaving you knowing that I was giving myself to chance to cry. I read your yearbook entry when I got back knowing that I’d be reading through tears within sentences. I went into the bathroom after that knowing that I was giving myself the chance to sob.

I don’t think I would have wanted it any other way. Somehow these tears are humanizing and serve as some sort of testament to our love. They are a reminder that this is real and that somehow, I really am this lucky. Otherwise, sometimes you really do just feel like a dream to me.

Today I said goodbye to a countless number of people, all of whom were important in their own way. But at the end of the day, today was about you. Please, don’t let your love for me ever change - you mean too much to me.

Thank you. I love you. And yes, I do believe in you.

2873-6713

The funniest things make you nostalgic when the time comes. For me, my phone number triggered sadness in me as I gave it to the guy at the video rental place the other day. For some reason there is a memory that sticks in my mind about my phone number - it was ages ago and my friend and I were sleeping over. His mom asked for my home phone number and I had to say it out loud in Cantonese before being able to figure it out in English. So it was that memory of saying my phone number that came to mind combined with the realisation that my phone number of 12 years would only be my phone number for another two months that made me feel yet another pang of sadness as I prepare for my departure. Soon I will be two-eight-seven-three-six-seven-one-three no more.

you don't know me

You give your hand to me
And then you say, “Hello.”
And I can hardly speak,
My heart is beating so.
And anyone can tell
You think you know me well.
Well, you don’t know me.

drama queen

I always tell people how I’m a drama queen when it comes to my mom. And I laugh it off. But I think you’d be scared. You’d be scared to see how I can scream, cry, and b*tch with the best (worst?) of them. Frankly - I’m scared. Okay, not too much - but I am trying to gain some perspective on it. What exactly is so dysfunctional about parent-child relationships? I hate to think that I fall into that typical rebellious teenager stereotype, but perhaps that’s where I belong.

I mean, if you really think about it, it’s kind of bizarre. I am this (I think… I hope) perfectly amiable and patient person at all other times. I pride myself on being able to smile in the most stressful of situations - perhaps in an eerie Bree van der Kamp way. Then something snaps in my brain when I begin to argue with my mom. No, scratch that - the moment I see her. And I know part of it is that your relationships with family are inherently different, but why does that mean I can’t have a discussion with my mom on any serious subject without escalating it into a (figurative) fistfight?

Part of me sees how it is easy to blame her. After all, I’m the rational one. She’s the one who openly dismisses logic and insists that it is wrong for me to put the two of us (parent and child) on equal ground (e.g. it is okay for her to raise her voice and not okay for me to do it in response). But then I think about how a) I am perfectly capable of dealing with less rational and infinitely more annoying classmates and b) I know that escalating the conflict is not helping anyone.

So - I thought writing this out might help me. Might help me have more perspective the next time I’m on the brink. Might help me understand - if not now, in the future when I look back on this post (after all, added distance provides further perspective). Might help me become a better parent someday. And if nothing else, it will provide for interesting background source material when a psychologist decides to research my case after I become insane.