Connect to Chinese ROS1 Group

I always believe that we are stronger together than we are alone. So when I heard that there is a Chinese ROS1 Group, I tried to put people from both sides together. I stayed on Chinese ROS1 Group for 3 weeks now, and I’m an active member there. I have passed our US ROS1 Group’s information to the Chinese ROS1 Group. They are very enthusiastic, right away there were several of them want to join the US ROS1 Group. I passed the Chinese ROS1 translations from our US website and our US ROS1 Positive Cancer with “Join the group” button. But Facebook does not work in China, don’t know finally how they could join.

I found that Chinese ROS1 Group are very well informed about what’s going on, they have the proceeding of IASLC/WCLC2018 and ASCO2018, etc. They have different doctors to answer their questions in their group chat and give them suggestions. There are doctors/researchers to recruit them for clinical trials. China is very active in research.

I noticed that, like us in North America here, the Chinese ROS1 Group members are facing the same problems like side effects of medications, medications stopped work, different new medications, alternative treatment, etc. This is the part that the Chinese fellows want to communicate with the fellow Americans. I suggested the Chinese fellows that I can translate their selected questions, ROS1 people in US will answer them, then I’ll translate it back, or vise versa. Any other Chinese in US side of ROS1 group, known Chinese writing, are welcome to join and to help.

Chinese don’t sugar-coat anything. They are very honest and straightforward. I’m not too familiar to it anymore after living in Canada for 30 years. There is another thing I’m not used to: fellows of Chinese ROS1 groups use humors to encourage each other. I also noticed that, besides cancer patients in the Chinese ROS1 Group, there is quite large number of caregivers-sons and daughters of the patients. They are 20 to 40 years old and responsible to take their parents to see the doctors, to get the medications, and to comfort the parents, etc. It shows that the Chinese close relationships between 2 generations. It’s also due to that every couple was only allowed to have 1 child until recently. So taking care of parents is the child’s sole responsibility. This is very different from North America. Nevertheless, I’m very impressed that the patients and caregivers of the Chinese ROS1 Group are very knowledgeable.

They have 245 people now in the Chinese ROS1 Group. Like us, the US ROS1 Group here, there are some patients/advocates, very intelligent.

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How does my husband help me fighting lung cancer?

A brief introduction

My name is Christine and I prefer to have my husband’s name concealed. We are Canadians and both professors in Engineering. I am diagnosed ROS1 NSCNL in June, 2015 when I was 50 years old. But my first symptoms were neurological; I only found out I had cancer after a head CT scan showed metastatic lesions. After a full workup, they found the primary to be lung cancer. As you all know, this means I am in the advanced cancer category: Stage 4. All the doctors, journal articles and blogs told me that my life expectancy with this diagnosis was on the scale of months. However, I have been on Targeted Therapy (Xalkory) for 3 years after 4 months chemotherapy. In addition, I had 3 Gamma Knife radiotherapy for my brain tumour. The cancer is under control now and I am still around. However, it has not been a smooth journey. Due to the brain tumours, I have right sided hemiplegia, and the steroids caused rapid development of cataracts. I was nearly blind for a 6 month of period before my cataracts surgery in 2017. Additionally, in 2016, I developed pulmonary embolism, and initially used injections and now use oral medication to control it.

My husband’s journey

Nothing in my life leading up to now could have prepared me for this experience. Although I consider myself a resilient individual, this is not something that I could have overcome on my own. My husband’s unwavering support and sacrifice continues to motivate me to be better and stronger than the day before.

Doctors visits, MRI and CT scans, weekly blood work, physiotherapy and unexpected Urgent Care/Emergency visits have become an inherent part of our life. My husband has been there every step of the way, even learning to be a caregiver. And this isn’t something that comes naturally to him, it was learned. After years of academic training in engineering and a career that promotes concrete thinking, my husband had to learn to become a caregiver. But whoever said you can’t teach an old dog new tricks never met my husband. For example, after developing a pulmonary embolism, I was put on therapeutic anticoagulation treatment delivered via needles. Unfortunately, several months later, I developed a bleeding wound at the injection site and after numerous urgent care visits with my husband, he essentially learned how to become a wound care nurse, cleaning and maintaining my wound at home between doctor visits.

The one thing my husband did not need to be taught was how to be compassionate and fiercely competitive. Due to my brain tumors and right sided hemiplegia, I had to undergo many sessions of physiotherapy and rehabilitation to essentially learn how to walk again. The results were slow… in fact too slow for my husband. Everyday, twice a day, we would go through the exercises. Even after I learned how to be mobile and independent walking with a cane, this was not enough. My husband registered us both up for a gym membership at the Reh-Fit Centre, a gym and workout facility aimed more towards promoting health and rehabilitation. We spend almost 2 hours every day there exercising. I can honestly say that, although it may not look like it, I am probably in better shape now than I was before my diagnosis. Now, I walk with a cane about five kilometres everyday and do a number of left leg exercises using weights. Thanks to this rehabilitation experience, we decided to go to World Conference of Lung Cancer 2018, facilitating to the International Association for Studies Lung Cancer (IASLC/WCLC-2018) in Toronto, Canada in September 22-25, 2018. A few months ago I would have never imagined going to the conference.

Another special character my husband has is that he is the absolute advocate for me. For the first three years, due to the chemo brain, brain tumour and its side effect, my mind was “in the clouds”, I was not very present. My husband read an abundance of literatures to understand lung cancer, immunotherapies, targeted therapy, brain tumour, Gamma Knife radiotherapy, pulmonary embolisms, medical supplements, etc.  My husband talks directly to the doctors, nurses, therapists, and pharmacists so we can be active and make informed decisions. He is not afraid to ask questions, to be wrong or to insist his opinions. I noticed that my oncologist takes values of my husband’s opinions and works with us when making decisions. As I slowly regained my awareness, I noticed how much my husband has gone through this alone. He is such an advocate for me, and he inspires me to be a good advocate for myself and for others.

My story:

Besides my experience described above, there is a part of me that I still cannot figure out that I must experience severely chemo brain and/or brain damage due to brain tumour. For the first two and half years, my brain was always foggy, my cognitive functions related to memory, reasoning and perception were severely compromised. I also struggle with producing my words, as if the key words of my sentence were taken out. That is why I felt I was always on the cloud, and I couldn’t communicate with others, I felt detached. However, from time to time, I was aware of what was happening around me. After my cataract surgeries, I started to re-gain my awareness and memory slowly but steadily. My husband is constantly encouraged me to go beyond what I thought I can do. Now, my brain fog is getting much better although I will not say it is fully recovered. My speech is much fluent although short-term memory often still bothered me. I joined social media five months ago. I actively communicate with my peers about my experience and their experiences. I am actively involved in volunteer activities, eg., I am part of the Canadian Cancer Society, Peer Support Volunteer, participating in ROS1+ Cancer Group and ROS1 Cancer Research Forum, attending IASLC/WCLC 2018 conference (September 23-25, 2018 in Toronto, Canada), and am closed following variously activities of the Bonnie J. Addario Lung Cancer Foundation. I am back, but I owe it all to my husband for his support.

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Effect of my cancer on my children

When I was diagnosed ROS1+ NSCLC, my children were 16, 18, and 23 years old. My main concern is around my children, how would they handle my sickness? How did they react to others, like school kids or acquaintance? Would they feel inferior that they don’t have a mother? Thinking people will look at them pitifully will pain me in my heart…. Three and half years has passed. My older son is doing his medicine specialty, and my younger son just started university last years, both boys are in the same city, away from us. My daughter stays with us and finished university this year. Due to the coincident reason, my two younger kids are written essays, part of it is the effects of my cancer on them. Here they are with original words:

From my younger son:

“When I was 16 years old, my mother was diagnosed with cancer. The diagnosis was sudden and was a very difficult time for me, however I was able to overcome it in a variety of ways. One of the ways I did was by helping my family in any way I could. This often consisted of grocery shopping, cleaning the house, cooking meals, and doing any small tasks at hand. By doing this, I matured quickly and also gained an appreciation for the little things my family had done. Another way I overcame this challenge in my life was to spend more time with my mother. By spending more time with my mother, I get to see how she is still strong and doing what she loves even with her sickness and it motivates me to pursue more in life. I began to work harder in both academics and sports. I made the Manitoba provincial basketball team twice (2016, 2017), and also decided to help coach a middle school team to help out within my community. Although it is difficult to fully overcome this challenge, I feel that I have made a lot of progress and have grown and matured along the way.”

From my daughter:

“In the summer of 2015, my mother, who has never smoked a cigarette in her life, was diagnosed with lung cancer that had already metastasized to her brain….

My mother and father are the strongest individuals I know. Over the past three years, my father’s unwavering support and sacrifices for my family continues to motivate me to be the best version of myself. My mother is a fiercely independent and successful career woman so watching her have to leave work was heartbreaking. My mother never gives up on living and enjoying life. My mother’s brain tumor affects the communication between her brain and her right arm and right leg. She faces these new challenges with unwavering bravery and determination. My mother learned how to write with her left hand, she adapted her gait, she continues to work from home, and shares her experience with others in hopes to help people who may feel alone in their battle with cancer. She is my never-ending inspiration to work hard and pursue my passions despite any obstacles.

During the summer of 2017, my mother’s gait became the inspiration for the cross correlation research project. This was one of the first opportunities I had to take a real world issue and try to do something about it. I feel so proud and appreciative of all the hard work that was put into it. It really helped fuel my passion and push me to continue to explore medical professions.

Although this has been the most difficult experience of my life, it has helped me grow and has shaped me into the woman I am today. Balancing the doctor’s appointments, increased number of family responsibilities, while also pursuing my academic goals and extra-curricular activities at competitive levels is challenging but something I am proud to be able to achieve. I work hard to organize my responsibilities and activities efficiently to maintain a balanced schedule while maintaining a high level of execution. I focus and work hard at whatever task I am working on, whether it be a research project in the lab, studying for an exam, or training for the 10-day long World’s Ultimate Championship Tournament that occurred this summer (once every 4 years).…”

When I just read them, a kind was guilty instantaneously overwhelmed me, but it was replaced by a kind of unspeakable proud. My children grow up, they are better and stronger than I thought, more mature than I could imagine. They are resilient. I’m so proud of them.

There is just one problem. I told my kids, people who read the assays thought I was dead😢. Don’t you want to add something to tell people I’m alive and enjoying every minute of my life thanks for the targeted therapy😊?

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What is a Survivor?

Being called a survivor is empowering. It gives me the feeling of conquering something grand and significant. I often use this word to describe myself and my fellow lung cancer patients. However, each time I use it, I cannot help but have doubts in my mind: am I really a cancer survivor? I’m still in active treatment, seeing doctors regularly, and being monitored with regularly scheduled CT, MRI scans and blood work. I have not, and will not ever be “cancer free”. When I die, whether it is tomorrow, next week or in a few years, can I still claim I am a cancer survivor today?

Most people associate cancer survivor with someone who is now cancer free. They were diagnosed with cancer, underwent treatment and were ‘cured’ of the disease. Unfortunately, this is not the story of most cancer patients. As you know, I was diagnosed with Non-Small Cell Lung Cancer (NSCLC) in 2015. However, for me, this was not diagnosed based on any lung symptoms. I never had a cough, chest pain or shortness of breath. Instead, I first found out I had cancer from a head CT scan showing multiple metastatic lesions. This automatically places me in stage IV cancer. I was never given the chance for a cure. For me, targeted therapy is a life saver, but it’s an inhibiter not a cure, my treatment is aimed at disease management. I will, in all likelihood, never be cancer free.

But I am a survivor.

According to Mariam-Webster dictionary, survive means to live on, or to continue to function and prosper. In Chinese, we have a similar word to survivor-幸存者,direct translation is the person who is lucky or fortunate to live on. Nowhere does it say that a survivor must be disease free.

After I got cancer, I have really grasped on to the word-survivor. With targeted therapy and other modern and interdisciplinary medicine, we not only live on, but are given the chance to prosper despite our condition. After my gamma knife radiation therapy for the metastatic tumors in my brain, I was left hemiplegic: this means I could not move the right side of my body. Despite all this, with the help of my medical team, rehabilitation team and my family, I can walk independently at least 5km every day, cook meals, clean the house, travel, do most of things people do, i.e., I have been able to live on, function and prosper. Although I may not be cancer free, according to the dictionary, I am a survivor.

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Am I going back to my profession?

Since more and younger people are diagnosed with cancer and due to the targeted therapy and other modern treatment available to effectively treat the disease, more and more cancer patients return to their professions. I am pleased to see it, and this shows cancer is really becoming a chronic disease not a terminal one. For me, going back or not going back to my profession, I have a different thought.

Since I was young, I always ran into the question: if I could live again, what would I do? The  answer is supposed to be that I would still want to become a scientist. It shows my strong feeling that I love my career and I want to change nothing-a scientist again. As I became older, I see this answer again and again from those successful people, still want their professions.

Actually from the 1st time I heard this question, I thought secretly that if I could start again, I would live totally differently. Think about it, how boring would it be to live the same way if I could be given the opportunity at a second life. Even as I climbed the ladder to become an academic-scientist, I still occasionally daydream of being a theater director for stage drama or a food critique, though it really made me feel quite guilty that I am not completely devoted to my career.

Three years ago I was forced leaving my career due to cancer. Thanks for targeted therapy, I feel ok now, and I get a chance to change my career path. Last year, a professor, whom I respect a lot, wrote to me about his career before and after his retirement-a professor for ever. This made me think what I will do?

Although I enjoy staying home, it is not for me. Resuming my career occurred to me. After serious thinking, at this stage I don’t think it is an option. I am used to conducting large scale and impactful research projects, involving composing and reviewing in large competitive grant applications and participating in decision making in my related profession. But in order to resumed the work at this level, the mental strength and physical strength are beyond my reach.

Being a cancer advocates has up to my mind since one year ago. This is because 1) I was so intrigued by those scientists’ and doctors’ work on targeted therapy or immunotherapy. I think we are in a very exciting time that we are going to treat cancer as a chronic disease like AIDS 10 years ago or even conquer the cancer. 2) The cancer treatment team must be a multidisciplinary team, including an oncologist, radiologist, pathologist, therapist, and patient advocates etc. Creativity and knowledge come from collocations and can move the medicine forward rapidly. 3) This is the most interesting part, cancer treatment is really a healing art with science as foundation, unlike my previously profession’s thinking patterns, if A then B, logically beautiful but rather rigid. This leaves a lot of space for us to navigate though treating the cancer. Anyway, to be involved in this profession is very exciting.

I would not say that cancer give me the opportunity to change my career path, but this might be my fate.

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How to live like a housewife?

I grew up in a scientist family, my parents were scientists and were very reputable, especially my mother. The area we used to live belonged to the Chinese Academy of Sciences. The environment I grew up was similar among my childhood friends, at least we had one parents, if not two, were scientists. One thing in common was that since we were young, we were  brought up with “when you grow up, you can be anybody you want to be but not a housewife. The lifestyle of a housewife or staying home mom was very far from me, and I was taught, since I was a kid, right or wrong, not to become a housewife for the following reasons:

1) It was not not conceivable that you had to ask your husband for money, to ask for permission to do anything or to go anywhere. The equality between a man and a woman would not be there.

2) The society would also disrespect you because you were just dependent, not completed.

3) A woman should have her own dream or ambition. Just looking after the kids and husband would not be fulfilling enough.

4) How would you fill up the time meaningfully?

Under these advises, I become a career woman, quite a good one. Three years ago, I got diagnosed with cancer and I had to leave the work force. How could I live like a housewife? The thing is I have a bigger problem to handle  – my cancer, so I didn’t have time thinking about it much. Several months ago, I finally got the hang of it, I now know how to live with cancer, so again the issue arose, how could I live like a housewife or a women without a career?

After being “forced” to live like a housewife, I found something quite surprising:

1) I am much more sensitive to my surroundings, everything is like a movie in slow motion. I have time to reflect. Before I was sick, there was something that I was interested in doing more of, but had no time to do it. I always told myself that I would try it later. I noticed after all those years of procrastinating, things to “think about later” or “try it later” were things that I’m really interested in. Now I can, not only think about it, but also do it and enjoy it.

2) I can do things in the way I want and with no deadlines. When I was working, I used to have a “to do” list, a very long one. Make no mistake, I loved my job and I wanted to do most of the “to do” things, but there were always some I didn’t want to do but had no choice. Now I can pick and choose, do it in my way and at my own pace.

3) I enjoy everything that I finish doing. I still need to have a “to do” list due to many years’ habit. When I finish it, I feel I have accomplished something and then stop to reflect. It’s important to achieve something, big or small, nobody but only myself can judge it.

If this is what a housewife’s life is like, it isn’t bad. No matter what my life is like, housewife or not, I enjoy it. I have to say that cancer makes me feel another side of life. It teaches me to slow down, to listen to my body, to be more sensitive to what happened to my surrounding and to be more compassionate.

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Do I constantly think about cancer?

Yes and No. My life is surrounded by cancer, accept it or not. Each time when we plan something for the future, it always secretly creeps to my mind: am I still going to be around? Cancer forced me to say good-bye to my career, cancer paralyzed my right hand, and cancer put my family though such a difficult ordeal. Of course I constantly think about cancer.

But also no. After 3 years, I’ve kind of learnt how to live with cancer. Cancer is not up front and center in my mind. Everyday in the morning, when I open my eyes the first thing I do is looking through the window at the sunshine. I’m happy today is a sunny day, but I’m more thrilled if it is cloudy because I’m slightly more excited when it is raining. I walk every day for at least 1.5 hours, roughly 7,000 steps and 5 km, with the goal of 10,000 steps in mind. I read for several hours. Walking and reading are part of my virtue with my classical music or Jazz in the background. I enjoy making breakfast and dinner for my husband and my kids (while they stay with us), though I wish I could cook better. I work in the garden but I wish I were a better gardener. I go to the cottage, sit on the deck, enjoy the sunshine and the sunset over the lake. I thoroughly enjoy everything. Everyday I have lot to do and never have enough time to finish. How can you finish your life? But it’s ok, tomorrow I’ll continue. No, cancer is not always in my mind anymore.

Every 3 months I’ll have a CT, MRI and blood work. At the same time I see my doctors. I’ll fit doctors’ appointments into my schedule, this is very important; the highest priority. Each time before the checkups, I’m anxious. But I stay quite calm when it’s the time to have these tests and see the doctors. I remember, before I was sick, for several years I was very afraid of flying, each time I would have to make peace with god to get on the airplane. Now I handle the doctors with so much ease.

Life is short, be nice to people, do whatever is dearest to your heart. Stay in peace!

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