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.
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.