Thanksgiving

Thanksgiving is always a great holiday. You get to have a nice big meal with your loved ones. These days, I see each Thanksgiving as a milestone. I was diagnosed around this time of the year. When I first got diagnosed, I wasn't sure if I would make it to the next year. I would reseach via the internet to find out that the life expectancy of stage IV is about 8 months. Less than 10% make it to 5 years. I got so depressed, but I really shouldn't be reading these things online because everyone's life expectancy is different. I don't know what mine will be, but I am excited to know that I made it to a year. Hopefully there will be more years to come.

                                              

Lungevity Walk a Success!

The Lungevity walk on Oct. 21, 2012 was an absolute success!!
- Raised a good amount of money for lung cancer research
- Raised awareness on lung cancer
   - in the Asian community
- Lots of community spirit and love
- My shy parents initiated conversation with my friends

Thanks everyone for a great day out! :)

Bucket List

Everyone generally has a bucket list, things to do during their lifetime. I had a pretty substantial list, which I realize I might not get to, especially since I found out last week that my scan showed new spots in my lungs and bones. I've started to accept that, at stage IV, I will most likely not be cancer-free and will need chemo for life. I still save for my 401k and retirement accounts, but not so that I can live a comfortable life after retirement. I see the funds as something to leave for my family.

My bucket list has been drastically reduced. My most important item is to spend as much time as I can with my family and friends. Everything else is bonus.

Thank you!

THANKS SO SO MUCH to my wonderful family and amazing friends who have generously donated and will donate to the October 21st Lungevity walk. I can't wait to see and walk with everyone. We made it to our $5,000 goal! But that doesn't mean we should stop and become ambivalent. This should energize us! We're going to increase the goal to an ambitious $7,500! Please continue to spread the word. This means so much to me. I'm so incredibly touched by the support. I feel very honored to have such generous loving people in my life. The money raised will be used towards the very underfunded lung cancer research. Research that will benefit lung cancer patients, like myself. 

http://events.lungevity.org/site/TR?team_id=27440&pg=team&fr_id=3450&et=VH0HvERQyxlIkWzea3apKA&s_tafId=18190

MEETING POINT:

Battery Park

17 State Street (next to Battery Gardens Restaurant)

New York City, New York

SCHEDULE

This event will take place rain or shine!

Check-in/registration begins: 8:30 am

Team Photos: 9:00 am

Program: 10:00 am

3K Walk: 10:30 am

Closing ceremony: 12:00 noon

REGISTRATION FEES

Lung cancer survivor: $15

Adult: $25

Student (with valid ID): $15

Youth (13 years or younger): $10

Tarceva - Does it work?

My trial month with Tarceva is almost over. Tarceva targets a specific mutation on a specific gene location. I have a similar mutation, but on a different gene location, so the cancer may not be sensitive to the drug. I decided to try it anyway on the chance that the drug might work. It's been a nervous month for me. I did a non-medical self-evaluation in an attempt to determine if Tarceva was working. In the first two weeks, I continue to have aches and pains, sometimes more intense and in new places. The aches and pains have subsided some. I also had an episode where I saw light gray stripes, which makes me very anxious about the results of my brain scan. There have been inconclusive studies that the drug is working if the patient has face and skin rashes, which I have. After weighing the pros and cons, I was hopeful, but not that optimistic.

It turns out that my feeling was about right. My doctor told me that my CT scan results show that the lung tumors are stable, except for one, which grew. At first, I felt neutral about it. I was definitely glad that the cancer is mostly stable, but somewhat bummed that there was growth and no shrinkage. My doctor suggested that we monitor my progress again 3 weeks later of Tarceva. I'm still hoping for some shrinkage. Shrinkage is better than stable, but mostly stable is better than growth. So the news is not all bad. 

Wonderful Stranger

A few days ago, we went to a small french takeout restaurant, which had only 2 outdoor picnic tables. We ordered our lunch and decided to eat outside to enjoy the weather. We sat down by the table adjacent to the kitchen window without realizing that the smoke escaping would make it hard for me to breath. My friend thought we could ask the woman sitting in the other table if we could switch seats with her.

I didn't want to push it, but she inched towards the woman and asked if we could switch seats.
Woman: Why do you want to switch seats?
Friend: Because we don't want to smell the kitchen smoke.
Woman: So why would you think I want to smell the smoke?

It was a reasonable question that caught us slightly off guard. In an effort to be considerate to me, my friend just seem like a jerk. After an awkward moment, I walked over to the woman and told her my condition.  I explained that my friend wasn't trying to be a jerk. She was just looking out for me, but also didn't want to divulge any personal information. M said he could see her melt. She said she was having a tough day, because her friend is dying of pancreatic cancer. After an emotional hug, she gladly gave up her seat. After our lunch, I walked over to her and thanked her again. We hugged again. She wished me the best and said she'll send over lots of good thoughts.

My prognosis

When I received my diagnosis, I was so shocked, because as a relatively young healthy non-smoker with no family history of cancer, lung cancer was not in my radar. However, breast cancer was in my radar, because there's a good amount of marketing for their cause. I told M's mom that I hope to bring that same level of awareness to lung cancer when I get better. She said, why wait til you get better? Why not now? I thought about it for a while. I don't really know when/if I'll be free of cancer, so why wait.

My friend, L, accelerated my involvement in battling lung cancer community-wise. She found a not-for-profit organization, Lungevity (www.lungevity.org/), dedicated to eradicating lung cancer and supporting those impacted by lung cancer.  Lungevity was more than willing to assist us in heightening awareness in the Asian community.

We joined Lungevity's committee and decided to bring the Asian community to Lungevity's annual walk, Breathe Deep NYC on  October 21, 2012.  (http://events.lungevity.org/site/TRteam_id=27440&pg=team&fr_id=3450&et=VH0HvERQyxlIkWzea3apKA&s_tafId=18190). Being a  leader in at least two major Asian organizations, L would be able to reach out to Asians.

Being a patient at MSK, I offered to reach out to lung cancer patients. Last week I went in to MSK for my immunotherapy and to help market Breathe Deep. I grew antsy waiting for my  treatment only to realize that I won't get my treatment anymore. Unfortunately, the most recent CT scan showed disease progression. The trial drug had been tolerable, but the "good" days seem to have come to an end.

The doctor suggested that before we revert back to one of the harsher chemo treatments, I should try Tarceva daily for a month. The two main side effects are  diarrhea and face rashes. I'm not sure which is worse -  diarrhea or nausea. I guess we'll see. I felt like I was losing this fight. All I could do was look at M and cry. I want to grow old with him, but now I'm not sure if that was possible.

My mind was swirling with mortality, until I remembered that I was suppose to talk to my nurse about marketing for Breathe  Deep. I shook off the mortality thoughts momentarily and asked her if MSk would market this event. The nurse was familiar with Breathe Deep and offered to help.

I don't know what my prognosis is, but I felt better knowing the war against lung cancer will be promising with wonderful, compassionate, and inspiring people around me.

The BAM! Effect

I can be a clutz sometimes. I would be excited about seeing something outside the window and then BAM! I would hit my forehead on the window not realizing it was closed. Or I would walk out of a restaurant and then BAM! I would walk right into glass door. Strangely, I feel like that's life with cancer. I would be living my life carefree, happy, then BAM! A pain or side effect from treatment would hit me out of the blue.

The other day I was shopping for everyday home supplies. I had some hip pain, but nothing too overwhelming. As I was walking down the aisle, my knee suddenly buckled from weakness. I made it home okay, but the weak knee caught me off guard. Mainly, it's because I don't think about cancer much. I sometimes even forget about it, but events like these are a reminder that I'm physically not who I used to be. It's a reality check. It keeps happening, because I keep reverting back to my daydreaming ways. But I'd rather have reality mini-shocks and keep doing what I'm doing, than constantly think about what cancer might prevent me from doing.  

Can you hear me now?

In an earlier post (Early Detection Possible?) I talked about losing my voice. I didn't have much volume or energy to talk for many months. I was audible as long as there was no competing noise. So I was still able to communicate with my colleagues in the office, but if I walked out in the street or sat in a restaurant, I couldn't even hear myself talk. I thought it was a side effect of the inhalers I was using. Eventually I discovered that the cancer had spread to my lymph node. The growing tumor in the lymph node was pressing on the nerve that controls the movement of my left vocal cord causing left vocal cord paralysis. The left vocal cord was unable to meet the right one, which also caused me to be breathless when I talked and choke when I swallowed. 


My oncologist said that the paralysis might be permanent, because a nerve is hard to repair once it's been damaged. He sent me to see a specialist to inject a botox-like substance into the left vocal cord. This injection would enlarge the left vocal cord temporarily to meet the right vocal cord. That way I would be able to speak, breath and swallow a little easier. The results were as anticipated. My voice, breathing and swallowing wasn't the way it used to be, but better than without the injection. 


I went for a check up 3 months later, and told the specialist that my voice is gradually coming back, but I didn't have the volume. He numbed my nose and inserted a tiny video camera up my nose and down my throat to check the vocal cord. EEEEEE. AAAAA. He saw slight movement in my left vocal cord. It looked promising. 


A few days ago, I went for my regular 3 month check up and had the video camera down my throat again. EEEEE. AAAAA. My left vocal cord was MOVING! I can have my voice back! The specialist thought everything looked good enough that I didn't have to see him anymore. I couldn't stop smiling as I walked out of his office. 

My Luck

I'm pretty lucky. My treatment is not so bad compared to other patients. When I asked to reschedule my hip radiation time, the technician said she would try, but some times were blocked off for in-patients who get full body radiation... full body radiation. Their entire body gets zapped with radiation. My jaw just dropped. She said it was for folks with leukemia. Even though I just barfed as I'm writing this, I felt like a wimp for being upset about getting radiation for only a small part of my body, when other people have to deal with worse. The radiation team also made the treatment much more pleasant. I wrote them thank you cards for their kindness, light conversations, and constant smiles that really help me though.

Even my immunotherapy treatment is not as bad. For one thing, my current treatment no longer hinders the growth of my hair. So now my hair is growing back after radiation, and quite nicely too. I have a good amount of hair on the sides and back. I still have to wait for the top to grow some more or else I walk out with a reverse mohawk pixie. I can't wait to have a full set of hair and embrace the freedom of no head gear, especially in the summer.  

Guest Post (My Brother) - My Sister's Rock

For this post, I want to talk about my sister’s boyfriend, M. Ever since day one, M has been at my sister’s side unflinching, unwavering as a rock. He is “only” a boyfriend and at any moment, he could have left. But he didn’t, even when my sister is suffering the worst of chemo or bearing the worst of news. His smallest gestures mean the biggest thing to my sister. When she was undergoing periodic injections of Cisplatin, a notoriously rough treatment, she endured extremely terrible bouts of nausea. She became apprehensive of eating anything, fearful that what she ate would promptly be regurgitated. This vomiting wasn’t the vomiting from a stomach flu or from a morning hangover, but a long, continuous, painful, vein-in-the-neck popping hurl over the toilet bowl. The retching was very loud and horrible to hear. I know everyone who was with my sister also felt a knot in the stomach because there wasn’t much to do but to let it happen. M, when this happened, would unfailingly rush to bring a stool so that she could sit while hovering over the toilet bowl. He would have one hand on her back, one hand holding a glass of water. He would memorize how many liters of water she had drank during the day to ensure she didn’t become too dehydrated (which would worsen the nausea) and recall the 15 or so medicines she needed to take and when to take them (both the common and the scientific names). M is the caretaker to my sister that I aspire to be.

My family all knows what M means to my sister. He keeps her happy, a tether to normalcy. My mother, ever the worrier once confided in me, “I’m really worried. What if he leaves her?” My father, ever the tiger dad, who only months ago didn’t think he was good enough for his daughter replied, “I know his heart now. He wouldn’t leave her.” “But what if he does?” “He won't.”

The measure of a man is the loyalty to his woman and by that measure M is a man by a mile.

“In sickness and in health”…. he may have never uttered them in vow, but he has done them in deed.  Sweet words are rarely true, true words are rarely sweet but true actions, the very sweetest.

Sacrifices

I consulted with the radiation oncologist and my oncologist to determine whether I should receive radiation therapy for the met in my hip area. After weighing the pros and cons, I opted for the hour long treatment for 10 consecutive business days. The treatment required a simulation run and a dry run. During the simulation run, I received 6 small reference tattoos in order to be positioned on the radiation machine the same way each time. Getting these reference tattoos for consistent hip placement was much easier than getting a customized face mask locked down to keep my head still for the brain radiation. In some ways, hip radiation was a piece of cake compared to brain radiation. 

My dry run was scheduled a week before July 4th, but I had plans to go to Baltimore for my sweetheart's birthday. So I successfully asked to postpone the dry run until July 9th. I wanted to go on a road trip and celebrate the birthday of my amazing caregiver. It was the least I could do for someone who spends so much time and love taking care of me. I didn't think it was a big deal to suck up the pain for 2 weeks, but it was harder than I thought. I couldn't do it. I had to reschedule the dry run for this week, which means we would not be able to enjoy a long weekend away. I felt selfish. It's hard not to when a majority of decisions are made based on how I'm feeling. It's a struggle to remain selfless during such an inconvenient situation. I'm so thankful and lucky that my family and friends bear with me. 


                                                               Waiting at MSK

Handling a Setback

Last week, I suddenly felt an excruciating bone pain in my left hip/back area. Since I have a metastasis (met) there, I've felt a dull soreness before, but never a debilitating pain. I was unable to walk without assistance. I called my oncologist immediately and he scheduled a PET scan for me. I speculated that the bone met might have grown or I might have another met in the vicinity.

After the scan, my oncologist confirmed my suspicions. I choked up as he told me that the PET scan showed growth in the mets located in my hip, spine, lymph nodes, and lungs. Luckily, there were some decreases in the other mets in my lungs. For now, I will stay with my immuno-therapy treatment, but I need to consult with a radiation oncologist to determine whether to radiate the hip area. 

The thought of getting radiation again was unpleasant. The nausea, fatigue, and other harsh side effects was something I did not want to ever experience again. I want to move forward with this, but instead I felt like I was diagnosed with cancer again. All the thoughts of death and incapacity came flooding back. Eventually, I had to accept that the road to recovery is not linear. A bump in the road or a roadblock only means that you have to take an alternate road to your destination. 

Immunotherapy

The second part of treatment was recieving only the trial drug for an indefinite amount of time or until disease progression. The goal of this drug is to boost the body's immune system to fight the cancer on it's own.

Check out a video and an article about this promising drug:

http://video.msnbc.msn.com/nightly-news/47660773

http://www.nytimes.com/2012/06/02/business/drug-helps-immune-system-fight-cancer.html

This immunotherapy drug had side effects, but generally not the harsh side effects of standard chemotherapy, so I was able to gradually regain some energy and strength. After what felt like house arrest for 4 months, my increased energy and strength translated to increased mobility. It was an incredibly liberating feeling. I didn't know how long this energetic state would last. So everyday I would make an effort to take walks (rain or shine), commute (anywhere!), go out for meals, watch a movie, go to friends' apartments, and just live life.

Before cancer, living life had a different meaning. It was about traveling, working hard, working out hard, socializing, swimming, and just picking up new hobbies. The rush that I had for these interests is the same rush I now have when I go out for a meal or ride the train. That doesn't mean I don't miss my old life. I want it back so bad. I'm fighting for it. But the truth is I don't know if and when I will ever be cancer-free.

As one quote puts it - Life isn't about waiting for the storm to pass; it's about learning to dance in the rain.

                                                          One of my blog spots

Lungevity

Please walk with us. We need your support. :)

I am writing to invite you to join me on Sunday, October 21, 2012 for a fun event! I'll be at Battery Park to participate in Breathe Deep NYC, an event to support lung cancer research. You can check out the event details and can even register online at www.lungevity.org/nycwalk today! I know that the event is going to be a great time, and the proceeds fund a cause that is very important  to me, so I hope that you'll consider my invitation. Visit www.lungevity.org/nycwalk to register in under 3 minutes for this wonderful event! P.S. If you're not available on October 21, would you please consider making a donation to my fundraising efforts? Your support is important to me! To make a donation, click on the "Visit My Personal Page" link below. Thank you! P.P.S. The more the merrier—please forward this message to everyone you think would be interested in participating! Click here to visit my personal page. If the text above does not appear as a clickable link, you can visit the web address: http://events.lungevity.org/site/TR?px=1705847&pg=personal&fr_id=3450&et=Zei8PzpVNoasJr1Tn3Q-ng&s_tafId=18190 Click here to view the team page for Beating it for B If the text above does not appear as a clickable link, you can visit the web address: http://events.lungevity.org/site/TR?team_id=27440&pg=team&fr_id=3450&et=VH0HvERQyxlIkWzea3apKA&s_tafId=18190

LUNGevity Homepage | Unsubscribe
 435 North LaSalle St.  Suite 310
Chicago, IL 60654
312-464-0716

Getting Chemo

At MSK, the doctor introduced us to a promising clinical trial that just opened up at John's Hopkins in Baltimore, MD. (Yah! Baltimore is where my sweetheart is from.) The clinical trial was a two part treatment. The first part was getting regular chemotherapy along with the trial drug, then afterwards, just the trial drug. Regular chemotherapy consisted of cisplatin and pemetrexed, which have numerous side effects including kidney damage, dehydration, nausea, and decreased immune response. Additional drugs were administered to address the side effects, mainly nausea.

Treatment day began at 8am with the phlebotomist checking my vital signs and drawing blood from my forearms for blood tests, followed by a visit with the doctor for a physical. Once she approved, an order was sent to pharmacy for the drugs to be mixed and prepared. After some waiting, I finally go to the chemo suite to get the drugs intravenously.

Because of the combination of medications the whole process took about 10 to 12 hours, but getting chemo was a walk in the park compared to the days after. Fatigue and nausea were constant side effects. I was always tired and hungry, but I had no desire to eat, because I couldn't keep it in. It hurt too much to hurl, evidenced by blood that occasionally came up with the food (sorry!). I lost about 10lbs, which was all muscle weight, so I became what my friend called "skinny fat". Facially, I didn't look gaunt, because another side effect of the chemo was having a moon face. I looked like a chubby cheek teenage boy. Once, I waited in line at a pharmacy, and the register guy said, "I'll be with you in a second, Sir." SIR?! When I handed him my script, he said, "I need to see some ID because we can't sell this drug  if you're under 18." ... I guess I should be glad that I look so young?

Actually that was really the only time I was mistaken for a high school boy; mainly because I didn't leave the house much. On "good days", I passed the time slouched on the sofa thinking about what to eat next, what nausea medicines to take, when I should take the medicine. I also napped a lot after vomiting sessions. I became so physically and mentally drained. Every now and then I'd muster up enough strength to go for a walk or read a magazine. On bad days, I spend my time in the ER or urgent care to ensure that my symptoms were not life-threatening or precursors to serious complications like pneumonia.

Chemo was really taking a toll on me and my only consolation was the hope that it was taking more of a toll on the cancer. It's a competition on who can outlast chemo. There's still a long way to go, but I made it through round 1.

Guest Post (My brother)

Breaking the news

Even though my sister had been updating me about her doctor’s visits and CT scans, I didn’t have an inkling of what was to come . The likelihood that lung nodules was cancerous for an active/non-smoking woman under 35 was less than 1% and I took comfort in that statistic.

I still remember the day the pulmonologist told my sister the news very clearly. He called her up and said “I have the news from your biopsy. I don’t want to go over this over the phone, but please come in right away. Also, please bring in a friend for support”. At the time, I met my sister every day for lunch at the 42^nd St. main branch Public Library. When it was warm we ate outside and when it was cold, we sat on the marble benches under the giant vaulted walls in the vestibule of the library and chatted away. It was our little daily ritual that we adhered to, rain or shine.

The doctor’s appointment was at 1:00 and we met inside the library at 12:00. My sister thought he was going to tell her she had rheumatoid arthritis and she wondered how this was going to affect her life. She had butterflies in her stomach. I didn’t eat lunch that day and neither did she. I tried to calm her fears and at 12:30 we met up with our close friend and went to the doctor’s office together. We sat in his office waiting for him and chatted away trying to relieve tension. There was almost no one at the office except for the secretary.

The doc didn’t keep us waiting for long. He came in, pull up a chair next to her, held her hand and said, “I am very sorry to tell you this, but you have cancer.” I was floored. Shocked. And kept fighting back tears. We asked about the details of the cancer, what stage was it in and whether it was operable. The news wasn’t good on all fronts. He held her hand throughout and patiently answered our questions. Despite the incredibly devastating news what had impressed on me the most was what didn’t happen. My sister did tear up, but she didn’t ball uncontrollably. She didn’t ask if this was some terrible mistake. She didn’t ask if this was a horrible dream. After the doctor had left to leave us to absorb the news, the first thing my sister said was, “I want to go to work tomorrow and talk to my co-worker. She has cancer, and is raising kids. She is spirited and active and I want to learn how to be like her.”

My sister has the uncanny ability to find light in the darkest nights. In the coming weeks bad news followed more bad news. But when confronted with doom and gloom, she neither shrinks, nor sob, nor crumble, nor blame, nor freeze. She roars. Beli roars.

NYPL

Early Detection Possible?

I started getting shortness of breath in May 2011. I usually have allergies in the spring, but I've never had shortness of breath from allergies. I saw an allergist thinking it might be a severe allergic reaction. He prescribed me an inhaler, but after two weeks of no improvement, I went to a general doctor for a physical check-up. I got a clean bill of health, aside from the allergies. At the end of the month, I told the allergist that I wasn't improving any, so he prescribed me a stronger inhaler. After a week or so, I started to develop a coarse voice, which apparently is a known, but not so common side effect of certain inhalers. So I stopped using the inhaler and decided to see a pulmonologist.

The pulmonologist prescribed me another type of inhaler to use along with steroids. It seem to be working. I started to breath better and got my voice back. Then I caught a cold. The shortness of breath returned along with some wheezing. The pulmonologist prescribed me steroids and another inhaler again and told me to return in a month. I started to breath better, but my voice was losing volume. I thought the inhaler was irritating my throat, so I assumed that once I stopped using the inhaler, I would regain my voice. The pulmonologist agreed at the time.

During the steriod/inhaler treatment, I traveled to Spain and Morocco. Unfortunately, Casablanca was very polluted. I couldn't stop coughing and it took so much energy just to talk. I ended up catching a cold again. I was extremely frustrated that I was constantly catching a cold and my condition was not improving after months of inhalers and steroid intake. When I went back to the pulmonologist, he treated me with the same program, because he said the the cold set me back. I spoke to a doctor friend for another opinion and he urged me to get a chest x-ray.

The x-ray showed nodules in my lungs. :( Immediately after, I had a CT scan then a biopsy, which lead to the diagnosis. Given my age and lifestyle, the doctors thought that cancer would be extremely unlikely. They assumed I had a lung infection or some type of auto-immune deficiency, like rheumatoid arthritis.

Looking back, if I knew more about lung cancer, I probably would have insisted on an x-ray or CT scan sooner, which would have helped discover the tumors earlier. The symptoms for lung cancer are fairly general. E.g. Shortness of breath could be associated with asthma. This is part of the reason I'm writing this blog. I don't want anyone to go through what I am going through. As with most cancers, early detection is the best way to increase survival odds. Every time, I hear that a cancer patient dies, I feel so crushed and pained. The person fought, struggled, and didn't make it. It hurts. I feel a connection to people with cancer. When I hug a survivor or another patient, we don't have to say anything to understand each other. We just hold each other tight and give each other strength to go on.

Conclusion: Awareness --> Early detection --> Higher survival rate --> everyone happy. :)


                                         Adult onset of asthma or lung cancer?

Addendum: Why me?

Today, I met an absolutely wonderful nurse at MSK. She's been a nurse at MSK for 20 years. She was so informative and caring. She was there to draw my blood. She said I bet you don't smoke. I asked her what percent of lung cancer patients are non-smokers. She said 13%. It doesn't seem like a lot but there are 275,000 people expected to be diagnosed with lung cancer this year. In addition, there is a significant percentage of ex-smokers who are diagnosed even after they have stopped smoking for decades. The average age of lung cancer patients is 70.

She mentioned that there are studies out there to determine why Asian women are more prone to getting some of the mutations that cause lung cancer instead of Asian men. She also acknowledged the research on the high temperature of oil in the wok. What makes that carcenogenic? It's sticky. She explained that when you breathe in the air, the oil sticks to the lungs. That doesn't sound good.

The one great news she gave me was that lung cancer patients with the gene mutation have a higher survival rate than those without. Her advice: Don't read the statistics online! They don't apply to you! She said at the moment there is no data on the survival rate of people with mutations.

She's awesome. :) She had neat pins on her white coat. She said the pin of the lung is to remind everyone that as long as you have a lung you could get lung cancer. I asked her if I could snap a picture of her pins for my blog. She said sure. She gave me a pat on the back for starting the blog because these types of gene mutations are relatively recent discoveries so more awareness and research needs to be done. She let me cry, encouraged me to keep fighting, and gave me a great big hug. :) I wish more nurses were like her.

Here are her pins:

Why me?

I never really dwell on why this happened to me. It just happened because I have a genetic mutation, which is not uncommon for non-smokers. There are two known types of genetic mutations relevant for most lung cancer patients, ALK and EGFR that can be targeted by a gene therapy drug. Interestingly, these mutations occur more often in nonsmokers than smokers, women than men, and Asians than non-Asians. Scary. I fit into all of these characteristics. I have the EGFR mutation, but not on the specific site of the DNA strand that can be targeted by the therapy drug. So I have to undergo chemo. Argh.

Check out the web for articles and studies on Asian Americans and lung cancer. Here's an interesting one. Cooking fumes from a wok are carcinogens?
http://www.najms.net/v2i2p069/

Losing Hair

I was lucky to get into Memorial Sloan Kettering (MSK) early for treatment. The first order of business was to get radiation therapy for the cancer that spread to the brain. 10 treatments every business day for 2 weeks. Some of the side effects included nausea, moon face, weak knees, ocular migraines, and loss of hair. I'm just going to talk about the loss of hair for now.

The loss of hair was pretty traumatic even for someone who's not really superficial. Strangely, it was hard to get empathy... or maybe not so much, since it's not everyday people lose all their hair in a month or so. A lot of folks didn't understand the anguish of hair loss or maybe they didn't know what to say. There were jokes about the cool wigs I could wear to try to make me laugh, or attempts to trivialize the hair loss by saying it was not a big deal because the hair would grow back. It hurts to share my experience and get brushed off with a joke or have my feelings trivialized.

It's not trivial to have chunks of hair fall out as you're showering. The loss of hair made me feel like I was losing a part of my identity as a woman and as a healthy active person. I'm sick and I can see it now. It's a very visual and real.


When a good friend of mine found out that I was diagnosed with lung cancer, she immediately bought a book to try to understand what I'm going through.
http://lorihope.com/helpmelive/
I didn't read the book, but I did browse the website. What I really needed at the time was validation. It's hard to find, but when you find it, it's golden. It makes you feel safe again. It's part of what makes me feel I have everything to HELP ME LIVE.


                                                      

Dealing with the Diagnosis

During the staging process, I discovered that the cancer had spread to my brain, hip, spine, and lymph nodes. It was extremely hard to handle. Thoughts of death and incapacity among many other things  occupied my mind. I looked back at my life and thought if I died now, would I be okay with that? ... I would be. I'm happy with the way I lived my life. I'm happy with the wonderful family I have, the amazing friendships I've built, the places I've been to, the hobbies I've picked up, and the love (of my life) I found.

That made me realize I want to fight as hard as I can and as long I can because I want to be with my family and friends. So many people are rooting for me and I don't want to let them down. And if I only had a short time to live, I don't want to spend it crying endlessly by myself and miss out on life. 

So I take it day by day. It's gotten me to 6 months later and still going. :) 

INTRO

I was diagnosed with stage IV lung cancer during Thanksgiving in 2011.

It was shocking. My profile didn't fit the stereotypical lung cancer patient. I'm a young, non-smoking active individual with a healthy lifestyle and no family history of cancer. That may be why I was content with being (wrongly) diagnosed with allergies, then asthma for months, even though inhalers didn't do anything to relieve my shortness of breath. It was hard to comprehend.

The goal of this blog is to raise awareness of lung cancer to help remove the stigma associated with lung cancer, encourage donations to lung cancer organizations, and help people detect lung cancer earlier. According to the National Cancer Institute, lung cancer is the top killing cancer in the US.