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

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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.