Disclaimer: I sound like a brat, but this is uncensored. Here’s the real deal, folks.
I’m beginning to realize that the fight with leukemia (Mr. Luke) isn’t simply a physical toll on my body, which I will gladly attempt to endure and take, but a tremendous pressure on my heart and soul. Many of you have been sending thoughtful messages of support and admiration about my bravery and ability to keep a relatively positive demeanor throughout this whole ordeal. You raise me up to a pedestal of inspiration, hope, and faith. It almost makes me feel like I’m on a huge ego trip. Yes, I’m really grateful for all of these kind thoughts and vibes, but to be honest with you — it’s not like this everyday, and in particular, today is one of those days. In fact, half of the time I pretend I am happy until I forget that I have cancer and actually trick myself into staying positive.
I pretend because I don’t like sharing pain, particularly emotional pain which contains a certain depth to it that seems limitless. This is why nearly all cancer patients are automatically assigned psychotherapy to help them deal with the emotional extremities of a “life-threatening sentence”. No, in our defense, it’s not because we’re crazy. It’s because we’re dealing with too much on our plates. The same questions resurface and I continue to ask myself what I’ve done in my life to deserve something like this. Maybe as a kid I stole a pack of gummy worms from my mom’s cupboard without telling her. Or that sometimes my friends and I will pull pranks on one another just for kicks and laughs. But is that enough to render something like … leukemia?
You begin to really think about your own mortality. You try to smile when your friends come over. No one knows what to say or how to feel except pity. And you don’t need or want that. You see, keeping me in your thoughts is not enough, guys, as much as I appreciate with all of my heart this kind, voluntarily, out-of-your-own-will gesture. Joining a Facebook group is great, spreading the word is wonderful, but in the end the only thing that will save me and other patients in the end is widening the pool of Asian American and other ethnic minority donors in the national registry through a determined, call of action. As in … did you register yet? As in … would you like to host a bone marrow drive? As in … would you like to get down and dirty and just help me out for one day to get people registered?
I became distraught because an urgent email was sent from a coordinator at Asian Miracle Matches to 70 of my closest friends in Southern California that I was willing to burden. Only 2 of them replied. No, I’m not popular at all. For some reason, those 70 came to mind that I’ve developed a special connection with over time. Again, just 2. Reality hits.
There’s an overwhelming amount of guilt I feel and frustration, because all I can do is keep asking and begging. That’s all I’m good for these days with no guaranteed promise of the ability to return your favors. I also understand that many of you have fruitful, promising lives/futures and are extremely busy. All I can really tell you is that I have about 3-4 months time to come up with some kind of bone marrow donor match. That is nearly impossible. The pressure is on, as my doctors and bone marrow transplant coordinator continuously remind me of the time-sensitive nature of treating this disease. If not, they’ll continue to drag it on and on, keeping me alive with one chemo round after another until I become resistant to it and there’s no other alternative except an umbilical cord transplant, which will buy more time and is currently in the research/experimental stages.
I spend about 8 hours in front of the computer everyday (albeit going on Facebook every two hours, that is my fault) working on everything I can before I become incapacitated at the hospital again. The extra 2 hours are dealt with insurance and medical centers. Look, I know it’s not easy, but damn. Let me count the ways of anxiety:
Anxieties/Stressful Stuff:
- Missing your boyfriend and not being able to be with him as much anymore. Trying not to show HIM too much pain either. Always being separated and not being able to be with the one you love.
- Watching your parents go through it all with you. Everything. Every step of the way. And wishing you had some control over this disease.
- Trying not to yell at your insurance for purposely delaying important procedures at the very last minute you need to get them done.
- Wondering if nurses and doctors who work for insurance are on your side or the evil, profit-making side? Why do they ask so many unnecessary, sneaky questions that I don’t know how to answer?
- When insurance threatens to kick you out because you’re not a full-time student. How can I be a (undergrad/grad?) student when I’m sick like this? Am I suppose to take 13 units and vomit during class?
- Losing a normal physical appearance. Yes, I have no hair. As a female, it kind of hits you hard too.
- Not being able to eat what you want and craving it while other people eat it in front of you. (Okay, this one’s not too bad and I can deal with it.)
- Having black and white dreams of your own funeral pictures with a stand and flowers around it, then waking up in the middle of the night from it all … it was just a nightmare
- People who call you or your parents up just for a good ol’ story about cancer, then saying “gotta go, good luck” and hanging up. It’s true.
- Fighting insomnia
- Taking medications and hoping some type of chemical reaction isn’t induced from an overwhelming mixture of “must-needed” drugs to counteract a side effect from another side effect
- Money. And spending it on cancer in an economy like this. I’ve costed insurance almost $500,000 at this point.
- Asking and not being able to return the favor. Feels like debt.
- Feeling angry at God sometimes and alone, as if He’s not listening to you.
- When people write FML on their status pages … now does the fact that you couldn’t fit a size 7 shoe really an “FML”?
- Scaring people away, especially my friends
- Crying secretly in my sleep
- I’m a baby and not as brave as I should be
- Wanting to be free and outside instead of trapped at home/hospital all day.
In the end, I know I’m being a brat. And there are severe consequences for being too open about this. But damn, I am tired. If there is no one to proactively reach out for me, I will just pray that China eventually opens up its registry and improves U.S. relations. I will just let loose and let the natural fates determine whether or not I deserve to live and find a match. If God gives me three years to live from remission, damn, I will be enormously happy. That’s pretty much all I’m asking at this point. Three healthy years. Or you can knock me out when I’m 50. That’s even better. You can blast all the cancer you want in my direction.
I just want to live my life accordingly and do good while I’m young and still idealistic and hopeful. I’m not crazy, just talkative. This is how I deal. We all have our moment of weakness and well, here’s mine.
If there’s anything that’s even more bewildering, it’s the new sense of realizing who are your real friends and who are friends who are only with you when everything’s dandy and fine. You start to keep a natural tab on these people in your life and man, the clarity is amazing.
Finally, if there’s anything that consoles me, it’s the support of my boyfriend, who I’ve only dated for less than 9 months. He’s been with me ever since and strangely enough, I feel closer to him now than I ever have before. Not a day goes by without long exchanges of conversation. He anchors me in place and removes all the fears that I feel with the tone of his voice. And yet, I know that I’m not bound to him in any way and you let people go when it’s time. I remember asking God, “Can the one that I’m destined to be with called a James? Because that’s my favorite guy name.” I met him three weeks later at the library after an earthquake. So, not all faith and hope is lost, not that I’m basing fate on meeting this guy. But yes, I do love you, James.
I thought this was a funny picture.
