Pfizer Co-pay One Saving Program

March 28, 2016

Thanks to my ROS1er fellows on FB, I got to know that Pfizer has a copay saving program called “Pfizer Co-pay One Saving Program”, which helps you to get the prescribed medication with no more than $10 monthly out of pocket cost if you qualify.

Link: https://www.pfizercopayone.com/

I  have applied for the card, and it really works in my current pharmacy. It saves me $40 a month and hundreds a year for crizotinib!

On the other hand, not many patients or caregivers are lucky enough to know about this program. Actually, this program is said to have been available for a very long time(no less than 2 years). And I didn’t know about it until recently. So, it is somewhat necessary to post about it.

 

Additionally, we went to Rattlesnake last Saturday. It is a short trail(3.8miles back and forth) but almost goes straightly up, so I got a little out of breath. Nevertheless, with the help of my alpenstock, I could hike like a healthy hiker and overtook many people.

It was very crowded all the way up and down, especially on the peak. Trails in huge mountains, like Mt. Rainer, are not yet opened.

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The view on the peak.

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The view in the trailhead.

Sometimes, I forget I am a cancer pt.. I don’t feel any symptom when the side effects are totally controlled. I feel free and normal when I am hiking, even though mostly I have to finish one big episode of diarrhea and take two pills of anti-diarrhea in the trailhead, which can cease the diarrhea for a whole day. As a result, I hate honeybuckets, but most of the time I have no other choice! Ugh!!! They have saved me many times though. I should be thankful to them, just hoping that they could be more clean.

I found my energy is much higher in sunny days, and it goes really down as the rain attacks. It sounds like I can carry out photosynthesis like a plant now! haha! Pray for more sunshine in Seattle!

It seems that you are conquering the mountains and the nature while you are climbing. What is more, you are conquering yourself. As to me, I find sense of worth and self-confident in the trails and on the peaks, which are very important to me!

First hiking in 2016

March 21, 2016

Hiking season is coming. And our first choice is Wallace Falls State Park. It’s 7.4km back and forth and not hardcore. I could handle it absolutely. The view is great, but it got a little crowded last Saturday. It is understandable, as it has been raining and raining these several months. People have waited for a very long time for the day!

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The forest is refreshing, with very little amount of green moss. Trees are well-spaced, straight and tall. LOVE it!

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We brought our calor gas stove and cooked some noodles. We felt good to cook and eat hot food in the woods, though we forgot our forks and chopsticks. Next time, I will double check!

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I met a snake when we came down. It was yellow-green in the middle and black in both sides. I almost step on it, when my husband saw it and noticed me suddenly. As I didn’t see it at first, I got frozen and screamed with fear. Then it sped up and ran into bushes quickly. It was  small, but poisonous I think. However, it must be much more scared than I am, as I am a giant to it for certain.

In the same way, am I a giant to my cancer? Maybe I am. Maybe the cancer cells are more afraid than I am. We are the strong ones against the cancer. There is no reason to be afraid.

Looking forward to the next trip. Hope the rainy day would go away!

 

《THE LAST CHILD》

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Reading makes me feel peaceful. It keeps out all the noise so that I can have a soul communication with the author, as well as myself.

Reading was not my hobby. I would rather surf the internet than read a book in the past. But I am more likely to sit down and read now, even though my eyes get dry and my neck becomes stiff after too much reading.

《THE LAST CHILD》is a book I borrowed from one of the “little free library” in our neighbourhood. The title attracted me, as I thought it would be some story about family.

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In short, this book tells a story that a twelve-year-old girl was disappeared and the family broke down because of too much pain and too much guilt. The mother never forgave the father because he was supposed to pick the girl up that day. People thought the father left and never came back again because of guilt. The mother was devastated and sank into drugs. Johnny, the last child, the twin brother of the missing girl, took the responsibility, and risked his life to track down the dangerous characters to find his sister. And Hunt, the detective of this case, concerned about this family and never gave up to find out the truth.

It turned out that the girl was not abducted, but was killed accidently by Johnny’s best friend’s brother, who drove drunk that night. And the father of the killer, who was a cop, forced them not to tell and hid the whole thing. Furthermore, Johnny’s father didn’t left his family. He was found dead because of finding his daughter.

It is a detective novel, but it is a book about family too (and many other things, such as friendship too).

I admire Johnny. He is so smart and strong and brave even if he is only a little boy. People have to stay strong but not devastated against disasters. If not, the whole family, the ones you love will suffer even much more.

I think people have to face and conquer the fear from the inside, so that they can stay strong and brave truly. “The fear itself is the gateway to go through”(from《BEAUTY IN DECAY》). We can find our way out only when we find out the truth of our fear.We can live smartly after we conquer our true fear, and then we will not regret ourselves.

 

Good bye, my burden hypothesis

March 12, 2016

I have been considering myself as a big burden to my family, especially to my husband since I was sick. I call it “burden hypothesis”. And it reached a peak one night. Lying in bed, I said to my husband:” You know what, I am a burden not only to our family, but also to the society of United States! I am afraid that the U.S. government will send us back to China because of my lung cancer, which will definitely destroy your career and I will DIE very soon without proper medication.”

My husband responded angrily. He said: “Stop thinking yourself as a burden! You are no burden to me! Half of my career is yours. And you are no burden to United States! We bought our health insurance by ourselves!

Well, my husband always saves me, physically and emotionally.

Why did I have to define myself as a burden? Maybe I was somewhat depressed those days.

Thanks to crizotinib and my doctors, I can live a near normal life even though I have stage 4 lung cancer and some side effects. It doesn’t mean that I can participate fully in my life, but I can participate as fully as I can.

All cancer patients suffer from an overwhelmed loss since the moment of diagnosis. As to me, sometimes I would think “Death is no longer fearful to me ,as I live like this, weak, diffident, lonely and disabled”. I have a bipolar emotion cycle, positive-negative-positive-negative. Positivity and negativity fight with each other all the time. But in other words, we can save ourselves emotionally.

I remembered Stephen Hawking during those times. “Hawking has a rare early-onset slow-progressing form of amyotrophic lateral sclerosis (ALS), also known as motor neurone disease or Lou Gehrig’s disease, that has gradually paralysed him over the decades”. But he is still enjoying his life and still doing research as a theoretical physicist and cosmologist. He said he likes parties in his documentary film and he attends a lot of parties.

As to me, I can pick up the hobby I have been neglecting for many years, such as photography. I desired to have a camera and capture everything beautiful while I was 22-23 years old. But this desire extinguished and was forgotten because of my busy study and work life. And I couldn’t afford a camera during my graduate study.

Yesterday, I looked at my husband’s camera and thought I have time to learn to manage it, finally. Here are some of my first shootings.

SDIM3367 Cherry blossom in University of Washington.

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My husband said “Having cancer is not all bad. You would not learn about photography if you don’t have cancer, because you would throw yourself into your study and work all the time and would not spare any time for the camera.”

He knows me very well! Actually, weird but real, our affection and marriage have been warmed up a lot since my diagnosis.

Being a cancer patient is very lonely, even though my husband knows me. No one knows exactly what I am suffering from advanced lung cancer and side effects. New hobbies will somewhat beat the loneliness and frustration.

I am a NEW me now. But I can enjoy things that the old me wouldn’t enjoy. Life is still very beautiful.

 

 

My first post-treatment CT scan

Jan 5 2016

My first post-treatment CT scan came back last Thursday. I got a dramatic improvement. Almost all the lymphadenopathy has gone, except one suspicious 1cm lymph node, which my oncologist did not consider it abnormal. The mass in situ has dramatically shrunk. The pericardial and pleural effusion has resolved too.

Both my oncologist and I are happy with this good news. But I know it is a very long-term battle with lung cancer. Good news only count for present.

“It would be too sad to think about the past, and it would be too nervous to think about the future”, some lung cancer survivors said.

It is right. I should live in the present, enjoy the present.

Having lung cancer doesn’t mean a dead end. My husband keeps comforting and supporting me by saying that the scientific research in lung cancer is progressing rapidly these several years. He also said “It is very possible that scientists will find a real cure in the near future. And I will try my best to find out the true molecule mechanism of the initiation of cancer, which would help them to find out the cure.”

He works very hard. He is planning to construct a tumorigenic mice model with the same gene mutations as me. I am very grateful to have such an amazing husband. And it is him that brought me to Seattle last year so that I can receive the most optimal therapy .

On the other hand, I can sense the rapid progress in the research field of lung cancer. I am very appreciated to the scientists who found ROS1 and Pfizer who found out the target therapy for ROS1ers. Basic scientific research, translational medicine and medicine research are all very important. It is all these researches saved me!

I used to consider “cancer survivor” as one has  achieved NED(no evidence of disease) . However, stage 4 lung cancer is considered to be incurable currently. NED does not mean cured. The examination methods nowadays, even PET-CT, can’t detect a very small amount of cancer cells, especially the quiescent cancer cells. So, it is very difficult to verify if the cancer is cured. As a result, I change my understanding of “cancer survivor”.

I am a survivor as long as I am alive, as long as I am still breathing!

Living with lung cancer may be boring. I am not sure what should I do can prolong my survival time, apart from keeping in touch with my oncologist and learning about the new progress.

In my daily life, I try to exercise regularly, try to develop new hobbies.

Would cancer change a person?

Well, cancer can definitely  change one’s life style. But it can hardly change one’s personality unless it destroys the brain area related to personality. I am still introverted. I still stay at home mostly rather than go out to make some new friends.

I used to be a very tough person. Everything under my responsibility represents my ability. They have to be done as well as possible.

I have been studying for USMLE(United States Medical Licensing Examination) right after I came to Seattle. I studied hard, even though I felt tired easily(Now I know it is because I have lung cancer!). I was so tough and stressful that sometimes I would blame myself of having cancer on my toughness. However, I am still tough and stressful now! I can’t change my personality in a short time or even in the future. So, I chose to avoid things that make me stressful. As a result, I chose to be a housewife rather than a student for USMLE. I gave up USMLE after 9 months full-time study !

As a non USA resident, I have language barrier and culture gap living in Seattle. I hardly speak English as I don’t have many friends speak English. As you can see, I am not good at blogging in English. But I try to keep updating this blog. I think this helps to improve my English.

It is 2016 now! Hope 2016 would be nice to me and my family, and you!

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Life with ROS1+ Lung Cancer

I came from GuangZhou China in November 2014 to stay with my husband in Seattle. I was a junior resident physician and have 3 year cancer research experience. My husband is a science geek, who works as a cancer researcher at FRED HUTCH. Thanks to all these, I can understand my disease and treatment easier. […]