30th…

Today is my 30th birthday, I am a full three decades old. As I sit here writing this post on one screen and watching the Packers take on the Detroit Lions on the other, my thoughts wander and drift and I wonder where has my life gone.

Life is so precious that no amount of money can possibly buy it, yet I am still living an existence that in my mind seems kinda pointless and unfulfilled. You only get one life to live but everything seems so routine, even the random occurrences.  How does one find their purpose?

Do I live for new experiences? Get married and have children and live for my children? Maybe I’ve been spoiled rotten, where everything comes so easily that there is no joy in getting something because its so easily attainable.

The saying “it’s not the destination, but the journey” really starts to hit home. Sometimes I really envy people with goals in mind and have the utmost respect for the people that achieve those goals.

My twenties had some of the best moments of my life, going through undergrad at one of the best universities in the world, making friends that last a lifetime, and living independently for the first time in my life and experiencing tons of new things. However, my twenties also brought plenty of bad times and feeling of hopelessness and lost.

Now as the new decade approaches, I am anxious and nervous at what it holds for me. The uncertainty is making me nauseous.

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Pointless existence

I’m not even sure why I bother posting anymore, maybe it’s out of sadness as if somehow writing it down will make me feel better, or maybe it’s just out of boredom. My dearest mom who cared about me more than anybody else in the world is gone. My sister ran off and gotten married, but she hasn’t been home in years anyways and now my father who I have more of a business relationship with went off to China for who knows how long. 

Even though I’ve spent a lot of time alone growing up alone. I never felt truly alone knowing that my mother was there. Now I don’t have somebody to yell at me when the music is too loud, or anybody who cares how late I sleep, or giving a damn whether I eat or not. All the things that I used to feel oppressed by were out of love and caring and now that that’s gone everyday that pass feels like a mundane and pointless existence heading towards an eventual end. It’s times like this that I truly wish that I was religious, not for my own personal sake, but just so I can know that my mother is having a good and well deserved time wherever she is. 

3 months after…

It’s been a little over 3 months since my mother passed away. The most important person in my life is now gone. The attacks of depression happen less frequently now, However the impact is still very potent when it does. Even the smallest trigger will fill me with deep sorrow.

Just today I saw a post on Reddit with the headline, “Morphine is a hell of a drug” and this picture

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While browsing the comments likeI always do, I see the many users talking about how great and how amazingly strong these drugs are. It makes me sad wondering how much pain my mother had to endure during the last couple of years of her life.  She was on 15mg of methadone every 8 hours, 10mg of dilaudid every 3 hours, and 200 micrograms of fentanyl as well for god sake. The only thing that’s keeping me from not being an emotional wreck is knowing that at least she’s not suffering anymore.

As always fuck cancer

Unspoken Eulogy

A few months before my mother passed she jokingly said to me, “you should write a book about my life.” At the time I thought to myself if I wrote a book about your life, it would take me forever since one book would not be enough to show the person my mother was and the impact she had on my family and extended family.

She was born in some random village by Changle in the Fujian Province, on 10.10.62 to a dirt poor family with five older sisters, and one older brother. She was the youngest, and therefore the most expendable in the family. So expendable that she was given up for adoption due to her family’s poor financials. Her older brother, only a toddler at the time picked her up and brought her back home. My mother’s family were so poor that they couldn’t borrow $5 dollars to take her to see the doctor. Due to subpar medical knowledge back then, my family was not exactly sure what my maternal grandmother died from. All I know is that when she passed, my mother was only slightly over a year old.

Due to having such a tough life, she became the type of person that she was. If somebody asked me to describe my mom, I would say she was extremely hardworking, strong, good, tough, a very caring person and loves kids.

Skipping past her poor and tough upbringing where she had to herd cattle, collect firewood for sale barefoot in the mountains, and the constant beatings received from her stepmother, you would think she was about to enjoy life as an adult. But no, my mom came to America in 1983 and started working 10+ hours a day in a sweatshop and then in 1991, she moved to Philadelphia and worked in a Chinese takeout restaurant for 20+ years until she got sick with lung cancer, because of me and my sister.

She loved children, I don’t know if it’s because she was the youngest and maybe it’s because she lost her own mother when she was younger but she loved and care about her kids and a lot of other kids.

At the time it was very popular for our people to send their children back to China so that the family elders can take care of the children because the parents are too busy working to take care of their kids. It makes sense especially since first generation Fuzhounese like my mother basically worked ALL THE TIME. To provide for their family here as well as their family back home.

But she didn’t send me back, she decided to tough it out with me, even though having me around would be such a big extra burden. Can you imagine taking care of a growing child while working in a sweatshop for 16 hours a day in NYC almost singlehandedly without speaking a tiny bit of english? That’s what she did, the sacrifices that she made, I’m not sure if anybody in her situation back then would take the tough road that she did. Even Fuzhounese couples today, in 2013 with both parents, and much better off are still sending their kids back because they don’t want to deal with the extra burden.

Maybe she didn’t want me to grow up without knowing my mother just like she did.

She was just so strong…

She loved her kids so much, even though we were dirt poor, she always bought me whatever I wanted.  She would put in extra hours at the sweatshop so she could buy me whatever I wanted. She never wanted me to feel inferior due to material things. Maybe it’s because she grew up with nothing, she didn’t want me to feel the same way. When we moved to Philadelphia and started the takeout restaurant, she would get me fried fun kor, my favorite food every time she goes to NYC with my dad to get stuff for the restaurant.

When I was younger and getting fat she would make a basketball hoop in the restaurant basement out of MSG containers for me to exercise. She would play basketball with me whenever the restaurant wasn’t that busy. She didn’t have time to take me to the park because she was too busy working 7 days a week, and 12 hours a day at the restaurant.

Till this day my mom is still the most accurate shooter I have seen in person. Sure her range, wasn’t that far but she cannot miss.

One time after I visited my uncle’s place in New Jersey, I told my mom how cool it was that my aunt can drive. I was just a kid and didn’t know any better, but I guess my mom, not to be outdone, then worked super hard to get her driver’s license because she wanted me to be impressed by her instead.

As I grew up, my mom drove me all over the place, even though she had no time to spare on her hands. She would take me to go karate lessons at Kim’s Karate to get me exercise. She would take me to numerous tutoring centers from Kumon, Accel Academy, to A+ and etc. Spent an obscene amount of money on my education to make sure that I had the opportunities that she didn’t have.  Each time, I would get off the bus, she would be in the car with an order of Chicken with Broccoli for me waiting to take me tutoring even though she herself didn’t have time to eat.

My mother, who was basically deaf and mute in this country she would say, due to her lack of ability to read, write, and speak english still manage to provide a comfortable life for her family and managed to find more and more tutoring centers much to my dismay.  She would have help taking her to each place the first time and have road to each place seared into the back of her head and using whatever necessary, whether it’s memorizing the buildings or how many traffic signals it takes before she needs to turn.

That just shows some of her work ethic, not only does she have a ridiculous work ethic, she is very proper and needs things done the right way. She can’t stand half assing someting and if you are going to do something, do it right. If it’s something she can do herself, she never wants to bother anyone.

She always taught me the value of a dollar in her own quirky way. Growing up, if I wanted to buy something stupid, she would always tell me, “do you know how many chicken wings I need to fry to make the money in order to buy that?” She’s so hardworking that to save a couple of bucks, she drove the delivery van to pick up the produce from the trading company instead of having it delivered to the store. The same mother who couldn’t drive before, yet willed herself to learn how to drive is now driving a big ass Ford Econoline 350 all the way to Chinatown, loading it up with produce, and bringing it back to Northeast Philly for the restaurant.

But my mom doesn’t just teach me about money, she also tried to teach me to be a better person. Through her own unique way and weird old people Fuzhounese sayings such as “When a King says a mistake, he can speak again, when a peasant does it, gets beat nearly to death.” Or criticize me when I prefer to play with newer stuff by saying “It’s easier to shit on a new toilet”

Even giving me advice on what to look for in a wife, telling me that beauty fades and they will get old, so find somebody that’s smart is the main priority, so my kids can be smart too, and tall too. Always tall too. While that’s a given, she also told me in looking for a wife, to find a girl with meat on her butt, because if not, jeans won’t look good on her.

My mom loves her kids, sometimes too much.

After college, the first paycheck I received, I bought her a Chanel purse. It was damn expensive and basically cost my entire month’s salary but I didn’t care. It was for my mom after all.  It took me a long time to find one that I think she would like, I asked all my girl friends for their opinion and finally settled on one.  I was super excited to show her and when she opened it up, she took one glance at it and asked me how much it was.

After I told her, she made me return it. I was kinda heartbroken, maybe my mom had different taste than my girl friends, maybe she didn’t like the design and whatnot, so I went and returned it.

Then less than two weeks later my mom shows up with a brand new Chanel purse that is the same exact design as the one I got her. I then realized my mom wanted me to spend the money I earned on myself and it wasn’t that she didn’t like the purse. She just cares about her kids too much. I could always earn more money Mom.

She loves her kids too much that even when she is in pain from her cancer, she just bears it, instead of waking us up to call the doctors for more pain medicine. She just bears it, I can’t even begin to imagine the pain she felt, but she just bears it. WHATS WRONG WITH LOSING A LITTLE BIT OF SLEEP MOM. I RATHER STAY UP FOR DAYS SO YOU FEEL JUST A LITTLE BIT LESS PAIN.

But now, she doesnt have to feel pain anymore I guess. No more dilaudid, methadone, lyrica, oxycodone, naproxen, no more of that fucking cancer that took you from at barely 50 years of age.

I hope I can be half the person that she was and I hope I can see my mom again.

The War has ended and nothing left but shattered pieces and hearts full of sorrow

After almost two years of battling lung cancer my dearest mother lost her battle this past Thursday, July 11th. My heart is extremely heavy right now and nothing seems right in the world. As I write this laying on her bed, I’m trying to remember as much as I can about her because I am so desperately afraid of losing anymore of her.

As I clutch her blankets and driver’s license and look through my phone at the pictures and videos I have of her, I’m just so mad at myself for not taking more. Maybe more is a point that can’t be reached since you can never have enough, but I just want to see her, see her alive and talking like in my videos and not like the cold lifeless body that I held in my arms yesterday at Memorial Sloan Kettering.

It just hurts so bad to think about my mom not being here anymore, to always be quick to dispense advice (whether I asked for it or not), to care about me (sometimes more than I want), and to just be my mom.

I’ve been her primary caregiver since August 10th 2011, the day she was diagnosed with Non Small Cell Lung Cancer, Adenocarcinoma. Knowing the poor survival rates for lung cancer. I had quit my job to help her, knowing that I could always find another job, but my remaining time with the most important person in my life was obviously more precious.

She wasn’t just a mother, but she was also my best friend. I was pretty much always alone when I was little, my mother had worked 16 hour days at a sweatshop in NYC in order to support my family. She always made sure I had everything I wanted and tried her hardest to make sure I don’t feel inferior to the other kids due to material things, she would put in extra hours at the sweatshop just so I can have a pair of Nikes or whatever else I wanted.

Many people know me as the ultimate mama’s boy because it’s true. I didn’t care. In fact, I wore it like a badge of honor. As if being a mama’s boy is something to be ashamed about. I love my mom, I never needed to say it or express it in some material way because it was obvious. I didn’t always have to get her a card or a purse or anything like that on like mother’s day because those days are arbitrary and besides I have bad taste in women’s wear and my mom would always make me return the stuff I get her.

It just wasn’t fair. I know life isn’t fair but this just seems to be a giant slap in the face. My poor mother, who had such a hard life since she was born, never had a break. Her own mother died when she was only a year old and her stepmother would use her as a little punching bag. If she couldn’t gather enough firewood for sale, she would get beat to the point of internal bleeding.

Such is the life of growing up dirt poor in rural China, with no shoes, barely enough food, and also the youngest daughter with 5 older sisters and one brother, she was basically expendable. In fact she was given away to another family and her older brother as a toddler himself went and carried her back to the family.

 

As she grew older, things didn’t improve by much. She managed to immigrate to the United States in 1983 and found work sewing in a sweatshop for 8 years working 16 hour days, had a disastrous marriage that she stuck through for my sister and I, and then moved on to working at a Chinese takeout restaurant for 7 days a week and having to stand almost 12 hours each day for 20 years. She was still working until she was diagnosed with Stage 2b lung cancer, with a mass of 8x9cm on her lower right lobe.

Of course as many people afflicted with this disease know, the first question often asked when finding out someone having lung cancer is did they smoke? NO, not only was she a non-smoker, she absolutely despised the smell of cigarette smoke. So much so that she would walk across to the other side of the street if somebody was smoking 10 yards in front of her. It’s ironic because all of my relatives that have been smoking non stop for almost 50 years are still living very well and the only person I know with lung cancer was my mother, maybe her lungs were too clean and even the littlest amount of pollutants made her more susceptible.

After diagnosis we tried desperately to get her into the best hospitals for treatment, but made the critical mistake of going after name brand hospitals instead of name brand doctors. After turning down Fox Chase Cancer Center in favor of the more prestigious Memorial Sloan Kettering, we thought she was set.

Stage 2B should be easy for the #2 Cancer hospital in the world right? I can’t help but feel guilty in the fact that my naiveté might have contributed to my mom’s early death. I feel extreme guilt thinking that if we had went to this doctor and had the lobectomy first, instead of having neo-adjuvant chemo, maybe she would still be here with me today. Instead, after one session of Cisplatin/Alimta sent her to the emergency room twice after she vomited daily for 2 weeks straight, she was switched to Cisplatin’s gentler cousin Carboplatin for the final 3 rounds. She had minimal shrinkage and had her lobectomy on December 20th, 2011 just in time for a Christmas miracle maybe.

Unfortunately this is a roller coaster ride that’s just beginning. After spending Christmas in the hospital for a lobectomy that removed her lower right lobe, part of her middle right lobe, a few ribs, diaphragm, part of the chest wall, I noticed that she had asymmetrical sweating where one half of her face would sweat and the other half would be completely dry. One hand would be cold and the other would be warm. Apparently the lobectomy had damaged the nerves to her sympathetic chain, which caused her permanent nerve damage that would plague her with random sweating in half of her body for the rest of her life.

While unfortunate, we thought that was something that we could have lived with if she was forever cancer free, like her pathology report initially declared her as. Come back and see us in 6 months the doctors said.

Less than a month later my mother claimed a new pain in her right lung area that was different from the surgical pain from the lobectomy. Subsequent CT scans showed that the cancer was back and spread to not only 2 nodules in her right lung, but also spread to her left adrenal gland making her a brand new Stage IV lung cancer patient.

What heartbreak that was. My mother goes through all that pain and suffering and permanent nerve damage to only be declared as incurable and terminal. But in the darkest of nights, a light shown through in the form of Xalkori, apparently my mother’s tumor tested positive for ALK mutation that only 3-5% of lung cancer patients qualify for and she was able to take this newly approved targeted therapy instead of chemo.

This so called miracle drug by Pfizer was supposed to give patients durable tumor shrinkage for almost 90% of the patients with this mutation. For my mom that “shrinkage” barely happened and lasted about 2 months, if even. After failing Xalkori, we were hopeless again and decided to try the 2nd Generation ALK inhibitor by Chugai. The drug had great results in the first month. My mother’s cancer shrunk 30% and the results were so fantastic that Chugai requested another scan to confirm the shrinkage. It was probably the happiest moment in a few years hearing about the scan results that day. Awesome results with no real side effects, but it too also lasted barely 2 months. By her next scan the cancer has progressed again and she was booted off the trial.

After coming off the Chugai trial we felt kind of hopeless with the ALK inhibitors and felt it was time to gamble with this apparently new radio dynamic therapy in China, we flew over to Wuxi, China, and there my mom was treated and the cancer supposedly shrank a little bit, but by the time we came back out to the states on new years, the cancer had grown again. All that traveling and money was wasted for absolutely nothing.

After the China therapy failed, we decided to enroll in the more potent 2nd generation ALK inhibitor LDK378. Once again it worked for a few months and even manage to shrink my mother’s two brain metastases to the point of not showing on the MRI anymore. Then as it has before, again the treatment failed. Her onc tried to go Chemo again with Carboplatin, Alimta with Avastin this time but it failed and she was hospitalized for pain due to her growing liver metastases, We then followed that treatment with Gemzar until she was hospitalized for Pneumonia two weeks ago. The last two weeks were a difficult struggle, where she would be in so much pain. She had large mets everywhere, from her lungs, causing her breathing issues, ground glass opacities, large liver mets causing her pain, spleen mets causing her even more pain, and the two brain mets that the LDK shrank also grown back up to size.

She has been in pain for so very long. She was on 60 mg of Oxycodone every 3 hours, along with 200 micrograms of Fentanyl every 2 days. But this latest hospitalization with pain due to mets in both her liver and spleen caused such a great amount of pain that they had her on 15mg of methadone every 8 hours, 10mg of dilaudid every 3 hours, and 200 micrograms of fentanyl still. The doctor said that in her 5 years working there they haven’t seen anybody on that much pain medication before. Even though she declined quickly, there were moments of hope when she was able to eat and talk.

But she was not the same strong mom I had always known, she wouldn’t eat, spent all day laying in the hospital bed with her eyes closed, was very weak, and in extreme pain. Her legs and feet were very swollen and she kept saying she feels like she’s burning from inside. Her breathing became difficult and her oxygen requirement increased while her heart rate would jump abnormally from 70bpm to 150bpm and bounce around due to atrial fibrillation.

NYU Langone medical center decided that since she finished her course of antibiotics and her pain well managed to discharge her. She couldn’t walk, but they decided to discharge her anyways and sent her back home in an ambulance saying that she would grow stronger at home than in the hospital. I have never seen or heard of patients being sent HOME in an ambulance before. While it is obviously the wrong decision medically, I am glad that she got to at least spend one more night at home before taking the ambulance right back to Memorial Sloan Kettering’s urgent care center the next morning.

At the urgent care center at MSKCC, the doctors informed us that she might not make it past the night, so we were all preparing for the worse. As she lay there in the hospital bed, in pain, barely able to open her eyes, I cried uncontrollably knowing my mom was gone. In my heart, I thought if she wasn’t going to get better, please end her suffering soon because just seeing her so weak and in so much pain kills me inside.

What breaks my heart was that she still thought she was going to get chemo, even on her deathbed. In her slightly delirious state she asked me “when is the chemo going to make me better?” my heart sank and tears flowed as I couldn’t bear to tell her that the doctors understandably refused to give her chemo at that state. To just sit there and wait for her to die is something I can’t even begin to describe, the sorrow, anger, and general feeling of helplessness.

At around 1pm yesterday, my beautiful mother passed, I hugged her, kissed her on the forehead, and squeezed her cheeks like I always do, but this time she didn’t yell at me to stop squeezing her cheeks like she always does. The sky was darker and bright at the same time and the only thing left is a giant hole in my heart and enough tears that can fill a world-renowned cancer hospital.

I’ve come to realize that I’m not crying because my mother passed away, I’m crying because she never really got a chance to live. She was only 49 years old when this disease took her. She never got to see my sister and I get married or have kids. That was always one of her biggest hopes in life. She really loved children and that is probably why she raised me almost singlehandedly even though she had to work 16-hour shifts in the beginning, instead of shipping me to China to have relatives raise me like many other immigrant Chinese families ,even those with both parents let alone just a mother.

I’ve always been fairly unreligious and borderline atheist and my mother being sick with lung cancer doesn’t exactly help. Because if there was a god, why wouldn’t he/she spare my mom who was a truly good person and loved by EVERYONE even before she became a Christian with her sister’s influence. But these last 48 hours have started to instill something in me.

On her deathbed, the night before she passed away one of the few things she was able to muster, after she couldn’t open her eyes anymore but before she was unable to speak, was that, “I see god”

I came to the conclusion that it was because whatever god out there wanted her to come home since she had enough impact in the lives of so many others that even though her own life was short in length, it was great in meaning.

My sister, who has similar lack of religion like me, told me that while my mom was passing, she said a prayer. That when my mom reached heaven to send her a sign.

When we got to the funeral home, located in downtown Manhattan, I opened the door to the funeral home, and a giant dragonfly flew through the front doors. I didn’t see it since I was opening the doors, but my sister and her boyfriend both saw it fly inside. I’m going to take that as the sign and hope my mother is enjoying it there for she deserves it and had suffered enough for ten lifetimes.

Wuxi, China

The last time I was back in China was six years ago and even though I am in a different town, it doesn’t seem to have changed all that much.

I still see the squatting in ground toilets, sub-par internet connection but hey, at least there is wifi around now.

In the Huishan area where I am currently residing it seems that even in the countryside, a lot of the local markets and farmers are getting “walmarted” by behemoth sized shopping structures such as Tesco, with three levels of stores and supermarkets that include pretty awesome escalator ramps with magnetized cart stoppers

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Aside from the shopping center the only thing worth going is the little hair salon down the street where they provide amazing service that include, washing my hair, shoulder and neck massage, cleaning out my ears, and shave for 20 yuan.

I tip more for a hair wash in the states than the entire thing here.

Frustrating and Confusing times ahead

While I’m sure plenty of other people have it a lot worse than me, it just seems lately that life is a tough clusterfuck of issues and peace just doesn’t seem like a point that can be reached. My situation is making me pissed off at myself for not enjoying my life and potential to the fullest when I was carefree and also not applying myself more when I had the chance. The constant feel of depression and restraint chains me each day while I figure out the next steps to take in life. The fact that I am stuck here doing something that I don’t want to do because of my filial responsibilities in combination with a lack of clarity in life and my constant brooding over a failed relationship while seeing other friends and family’s happiness is making me old, bitter, and weak. Part of me wishes to just go somewhere… anywhere…