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.
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