I would not consider myself a very cultural person. I left China at age 23 soon after I finished my undergraduate studies. I came to Canada in 1986, obtained  MSc and PhD degrees and got a university job. I was extremely busy with work and family life, … see the whole story from: https://lungcancer.net/living/chinese-new-year/

A Canada Opera company in Toronto staged an opera “Hadrian” in November, 2018. It was a forbidden story of betrayal and sex. It had all the ingredients of opera, except the relationship were between 2 men, Roman Empire Hadrian and a Greek man, who was empire’s true love. The composer of Hadrian (Mr. Rufus Wainwright) is a gay man. The gay men are interested in opera for hundred years on the stage, but there is no big character about guy man on the stage. The almost nude body on the stage and the sex between the 2 men relationship may run away traditional audience but may bring in new audience according to CBC.

I watched CBC National about the above news. It made me think about my interactions with gay men and lesbians during my life.

I was born in China, and until I left China in 23, I had never heard anything about gays or lesbians. When I was a graduate student in Canada, I heard some of my girl friends talking about gays, and they showed some kind of scariness or at least nervousness. But I never had met a gay man.

After I have received my Ph.D., I was hired by the same university. I had quite a lot of collaborations with one of the colleagues from another faculty. Actually when I was doing my Ph.D., I was using her equipment and lab for research. So I knew her quite well. After almost 10 years, somebody told me that she is a lesbian. I remember I paused a little. This was the first time I was directly interacting with a lesbian. For some reasons, I was not surprised or nervous. Later thinking about it, I was surprised that I was not surprise or nervous. I had a very good working relationship with her. I respected her a lot. Several times she talked about unfairness and politics in the department. I was very impressed by her principle and straightforwardness. Keeping in mind that there were no women in Engineering. It was nice to have some people to talk to though she is from another faculty. Knowing her as a lesbian, I serous thought about it, it did not change at all my relationship with her. Several years later, she introduced me to her partner and 2 children. We became friends. The special thing for me is that we never mentioned the sex orientation of each other, everything was normal.

Around this time at the beginning of 90’s, I happened to see “The Kids in the Hall’, a Canadian sketch comedy consisting of 5 Canadian gay comedians. It was broadcasted by HBO and later by CBC. I was immediately attracted to the show not much the story but the gay men’s characters and manners. It seemed that these characters were only possessed by gay men. I was really impressed by one part of the dancing showing that how depressed and devastated the gay men were by being denied whom they were, and how they survived and thrived from it. One thing interesting is that some gay men express themselves to the extreme. The TV series left a huge impression on me. It really makes me see the gay men with my own eyes.

Recently I saw another show called “Four Gays and One Girl’. The girl asked 4 gay men various questions. I found 4 gay men were extremely relaxed, honest and elegantly funny. This is something extremely pleasant to me, don’t know why.

Five years ago there was a very famous homicide in Canada. A Chinese young gay man came to Montreal as an international student. He was killed by a local gay man and his body part was mailed to different parties. The police finally arrested the killer. I was closely following the news. One thing I noticed is that the police wanted to question the Chinese gay man’s formal lover. A Chinese young man from mainland of China showed up. It came to my mind that there are Chinese gay men in China. This is a progress in China, at least accepting gay populations. The second thing I noticed was that the victim’s parents came to Canada and sat in the court room, and later gave an interview. I was glad to hear the victim’s mom talked about his son fondly. I also noticed that there were some Chinese that were helping the victim’s parents. China has come a long way.

This year, Toronto had 8 gay men missing and the killer was arrested. So gay men are like us, some are really nice and some are evil. I observe them by my own eyes, nobody tells me.

I support the Canadian government’s law to accept gay and lesbian marriage. My thinking is that this is basic human right for a citizen. The government has the obligation to protect every citizen’s basic right not just because they are born differently.

I also asked myself if I was gay, and the answer is no. But why I have so much feeling toward to gay men? I guess when I started to have interaction with gays and lesbians, nobody imposed their views on me. I look at them by my own eyes and with my own judgement. Also it is very important to form these opinions at certain age, so we can make up our very own mind.

This was the 4^th time I had my Gamma Knife procedure. We came to the Admissions of the Health Science Center at 5:45am. There were total 10 other patients there plus the caregivers. A young couple came in-the lady was on a wheelchair. The lady was very thin but she was not showing any discomforts or distress. But the young man accompanied her appeared to be quite stressed and nervous.  From his body language, it was not difficult to tell his distress and sadness. The sharp difference of the couple made me look at them twice. My husband also noticed them and was upset for the young couple.

I, on the other hand, felt normal, to certain extent, about this couple. From my experience, we, cancer patients, accept death, ie., we have peace with God. When we are forced to confront death, we have to and we will come up with some kind of peace. But for caregivers, this is harder and takes longer time for them to accept death of their beloved ones. That’s why I feel that the lady was remarkably calm.

“Accepting death” is a critical step for us, the cancer or terminal patients. It changes everything, I mean in a good way. It’s often not understood by healthy people.

I cannot forget when I ended up in the emergency room that I was diagnosed with cancer. I read something that I would never read or think before I was sick. That was about doctor assisted suicide. It happened when I was the Manitoba Chamber Orchestral as a board member. We were organizing a function in early 2010 and a lady named Susan Griffiths was one of the helpers there. She stood out to me, I still don’t know why and how. When I was in the emergency room in 2015, especially at night, I read the internet about the doctors assisted suicide, and I came a cross of her story. I noticed her and she was the first person in Manitoba to go to Switzerland to commit doctor assisted suicide in 2012. Canada passed the law to allow the doctor assisted suicide in 2016. It was illegal in Canada in 2012. She had multiple system atrophy, a rare disease that robbed her ability to perform the basic body function, and there was no cure or hope for remission. She was actively lobbying the government for allowing the doctor assisted suicide, but in vain. I specifically remembered reading and watching videos of her last moment: her daughter and the family were around her outside a hut type of house in Switzerland. They sang ‘Row Row Row Your Boat’. She was smiling and her daughter was also smiling, a real smile as if it was a picnic. There was no tears only peace. At the time, I didn’t know why they were so content, and what they were thinking of. There was a peace at the moment and I noticed it. Now I feel finally I get it; it’s the acceptance to death in a profound peaceful way.

I think being a cancer patient, we desperately want to live and we know how valuable each minute is. That is why we are so involved in fundraising, donating tissue samples for research and participating in clinical trials. But at the same time we all have some ideas of how we are going to die in a near future, and we accept it. This is I called “make peace with God” no matter which God you believe in. Once we have it, life is totally different, at least for me is like that.

When I was promoted to a full professor, I felt that being a professor was not enough. I was always intrigued by the leadership. I started to watch Ted Talks 10 years ago. Among them, 3 talks related to leaderships caught my attention. When I started the sick leave, I thought that those talks would no longer be useful for me. Surprisingly, they helped me in Fundraising during the Lung Cancer Awareness Month in November. I raised over $16,500. To help my friends fundraising later, I am summarising my experience here. Note that the analysis is purely for future fundraising purpose.

Three Ted Talks Related to Leadership

Three Ted Talks deeply effected me. One was given by Itay Talgam, “Lead like the Great Conductor”, the 2^nd one by Simon Singh “How Great Leaders Inspired Action” and the 3^rd one by Derek Sivers “How to Start a Movement”.

Itay is a musician/conductor from Israel. I got to know him due to the above talk, in which he looked at several famous conductors’ conducting styles, and did an interesting comparison to point out how to become a good conductor, actually a good leader at large. I learned a lot of conducting, but what I was most impressed was the relationship between “process and conditions” and “meaning”. Through the music, Itay explained how important it was to have a good “process and condition”, but it was crucial to have a good “meaning” for a conductor/leader.

Simon talked about being a business leader. I was impressed by the Law of Diffusion of Renovation he talked. The Law is that the people can be divided into several groups in any of the “movement”. Among them, 2.5% of population are innovators, 13.5% are early adopters, 34% are the early majority, 34% are the late majority and 16% are the lagers. We are always somewhere at the above stage and at certain time of our life. If we want “mass market” to succeed, ie, to have the “tipping point”, we must have 15-18% “market penetrations”. Normally we always have 10% people on board, the important thing is how to get another 5-8% people? That’s what makes a good leader.

Derek only gave a 3 minutes Ted Talk. It was funny and right to the point. He used a video clip to show the importance of 2^nd and 3^rd followers in starting a “movement”. The 1^st guy who was the leader, was a lonely shirtless “nut” who danced alone in a crowded picnic hill, till the 2^nd guy danced with the 1^st guy and the 1^st guy embraced the 2^nd guy. Then the 3^rd guy joined in and the 2^nd guy danced with the 1^st and 3^rd guys, and now 3 was a crowd. Following that, 4^th, 5^th …and thousand started to dance, because people wouldn’t want to be ridiculed not to join dancing- the movement was formed. So Derek concluded that the leader sometime is over-glorified; the 2^nd or 3^rd guys are under-appreciated. Actually, we should, at the proper time, try to be the 2^nd and 3^rd guys to start a “movement”.

Analysis of Fundraising:

I have motivation (good meaning) for fundraising for lung cancer research. This is really a life and death situation. Not many healthy people can feel it, although they claim to understand it. Anyway, nobody knows who will be the next person to get lung cancer. If you have a lung, you can get lung cancer.

In my fundraising effort, I had to find 18% “market penetrators”. I used some strategies. The 1^st group of people were my relatives. They were my “innovators”, like it or not. Next, I have to confess that I’m not a “people” person. I stopped the contact with my university friends for 30 years. Actually there were some of them in North America. So I gambled with this group of friends as my “early adopters”. The 3^rd group of people were my graduate students, who studied under my supervision and graduated. At my peak time, I had more than 15 M.Sc. and Ph.D. students in 1 year. I got along with my students well and cared about their academic growth. Within the University, we were like a family, but outside university I didn’t have much contact with them. I thought that these 3 groups of people could be approached as my “innovators and early adapters/majority”.

So I started from my relatives. I contacted 12 relatives. They didn’t disappoint me. All of them donated $2,625, among them 2 was anonymous amount. I purposely asked them to donate before or at earlier stage of fundraising. So they became the leaders to donate. Then I started with my former university friends at the beginning of November. To my surprise, they were unbelievably warm hearted and opened their arms to welcome me back even before they knew I got cancer. They donated within 3 days, many of them within the same day I asked. I contacted 11 friends, 10 of them (91%) responded and donated $1,300, and 2 were anonymous. Many of them donated $250-$500, and set up the level of the donation. My relatives and friends made the 1^st movement. Truly they were my “innovators and early adopters”.

Remember I needed at least 18% “market penetrators” to have the “market tilted”. So I approached my “early majorities”—my former graduate students. They were so surprised and excited that I emailed them. I guess without seeing me, they imagined that I was dying. Out of 46 students, 43 students (93.4%) responded with donation, total of $4,625 plus 8 anonymous amount. Many students responded within 2 days, and they wrote to me and thanked me for my mentorship. It was indeed very moving and overwhelming.

By now I had “moved” all my “market penetrators”. The last group I had in mind was not easy to convince—University Professors. The professors were extremely focused on their teaching and research. Donating money was not on their “to-do” list. I knew exactly about it because I was one of them. I divided this group into 2 sub-groups, one was the group of professors from other universities that I worked with. They were either I was their department visitor reviewing their programs or I was the grant reviewers, professional societies, external Ph.D. examiners, etc. Another group was my co-workers, the professors in the same university. I first contacted 18 professors from other universities, 10 responded (total 55.5%) and donated $1,970 with 1 anonymous amount. 8 didn’t reply, among this group of professors,1 refused to donate to a US foundation, and 3 said they would donate, but I had not received money after 2 reminders. More than half of them responded within 2 weeks, some needed reminders. I had good discussions with some of them, mainly those who themselves or their loved ones were suffering from cancer. Cancer touched so many people’s life.

Next, I worked with my fellow professors from the same university. I noticed that these group of professors were very different and could be divided into 3 sub-groups. The 1^st sub-group was female professors. In the Faculty of Engineering, female professors are minority, but they are incredibly passionate. They donated very fast, only in a few days. More over, the messages they wrote to me were very emotional. They moved me beyond my imaginations. I contacted 7 female professors, I received 6 responses (85.7%) and totally $1,150 with 1 professor anonymous amount.

The next group was my Chinese male professors. I’m very comfortable with men since I was an undergraduate student because most of the professors and students at that time were men in engineering, everywhere in US, Canada and China. But as usual, it’s hard for me to develop any deep relationships -I’m not good with people. However, through this fundraising, I found my Chinese male colleagues were so special-something that I never noticed before. I contacted 8 Chinese male professors, all responded and raised $2,500 with 1 unknown amount. They donated a lot and many of them were fast to response. This group of professors were very different from women professors in that man professors are very formal or somewhat rigid on the surface, but these “early adopters” donated very a large amount, several of them donated $500-$1,000. From the bottom of my heart, I appreciate it, my Chinese male colleagues.

With the last group professors, I had to be patient and could not expect prompt response. These professors normally needed several days to “sleep over” it, and finally forgot it. You really had to have a “thick skin” to go after them. I first sent the invitation to the Dean, and secretly hoped that he would serve as a role model. My Dean didn’t disappoint me. He donated right away and a high amount. I certainly appreciate it. For the most remaining professors, however, I had to send another set of reminding messages. I contacted total 22 professors, 8 of them (36.3%) donated $1,350, among them 1 was anonymous amount. 13 didn’t answer, and 1 responded preferring to donate to a Canadian Cancer Society. Those people were so-called “lagers”, like in Simon’s talk: “no matter what you do, this group of people are not going to move….they buy the touch phones because they cannot buy the rotatory phones anymore”.

Thought After Fundraising

Now the fundraising is over, I feel that it is an unexpected experience. First, the majority of the fund raised is through my direct invitations. There are two types of people you should consider in fundraising: (1) persons who want to conquer the cancer, no matter what kind of cancer. This type of people is difficult to meet, but they do exist; (2) persons who care about me and hope I will get better. The latter is the majority. Another thing I learned is that when I decide to donate later, I’ll do it soon. This is what I learn “to be the 2^nd or the 3^rd follower” because everybody is waiting to see the 2^nd and 3^rd followers so that they won’t be “ridiculed” to follow. Last and most important point for fundraisers-you have to be strong, have “thick skin” and if needed, to “beg” for the donation (good causes). For me, if I can handle cancer, what else can I not handle?

I always wanted to try according to the 3 Ted Talks just mentioned above. It is an exhilarating experience. These guys, Itay, Simon and Derek, are genius. However, the most important part, that I never expected, is the emotional journey I have gone through and the compassion I felt from people-it is truly beyond my imagination.

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.

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.

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😊?