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!


Chinese medicine or Western medicine-Part II

Is Chinese medicine working?

I was thinking for a long time whether the Chinese medicine was working or not. I have two types of medicine being used at the same time: the Chinese medications and the targeted medicine – Xalkori. I would wonder which one, or if both of them, are working?

In the CT scan in Feb. 2016, my tumour grew from 1.9 cm on Dec. 2015 to 2.6 cm, and from the MRI scans, there were several new spots in my brain. I started to use the Xalkori medication in March, 2016. The side effects for me were minimal, but in May, 2016, my platelets went down badly. My oncologist started to lower the dose of Xalkori, but still the platelets were low. For 6 months, I could not use Xalkori regularly. At that time, I hadn’t started the Chinese medicine yet.

I started to use the Chinese medicine in November, 2016. After a month or so, my platelets started to rise, and I could continue to use the Xalkori. After that, my platelets maintained at an acceptable level. My mother told me it was the Chinese medicine that saved my life. I was sometimes skeptical.

Every batch of the Chinese medicine has its own purpose according to Dr. Z (my Chinese doctor). For example, all my Chinese medications, according to Dr. Z, have the functions of killing the cancer cells, but the emphasis is either on the brain or on the lung based on our descriptions. Very often Dr. Z added some herbal medications to help my stomach, liver, and kidneys so that they are strong enough to handle the harsh cancer herbal medication. Dr. Z said to my mother that the Chinese medicine treats the body as a whole not like the Western medicine, which focuses on the diseased part alone. Dr. Z was quite clear about it and very proud of it.

My mother keeps observing me and asks how I’m feeling. I was still head in the clouds for the first 2.5 years, and did not remember much. According to my mother, who believes in the Chinese medicine, I became stronger, my face looked healthier, my weight remained the same, and my diet was getting better – all due to the Chinese medicine. The Chinese medicine emphasizes the body features, like the colour of the face, tongue, eyes and nails, etc. Dr. Z seemed confident. He claimed that 70% of my improvement are due to his Chinese medicine.

How I really feel?

I don’t know what happened to my platelets. Up to now, I still have 2 medications, Xalkori and the Chinese medicine. It seems that there is not any western treatment to raise the low platelet levels, or at least I did not have any. The Chinese medications are playing some role because since I started it, my platelets have risen and remained at an acceptable level, but what role or how the Chinese medication works? Nobody knows.

Dr. Z prescribed the Chinese medications for my stomach, liver and kidneys, which make me stronger and healthier. The Chinese medicine philosophy is to cure the body as a whole not only the diseased part alone. This is very wise. The western medicine should notice this difference.

It has been proven that the Targeted Therapy, like Xalkori, is working, though not 100%, a very good number of patients have been tested. My symptoms, such as the lung cancer is shrinking, brain tumour is mainly shrinking or at least not spreading for about 10 months, Xalkori doesn’t have any side effect for me, are all consistent with other patients. I think Xalkori is truly the life saver to me. Of course I realized that all the targeted medications, at this stage, are inhabitors, not the cure.

In future if the treatment is needed, I’d use Targeted Therapy (Xalkori or Lorlatinib, etc) as my main treatment, and Chinese medications, which aim at my stomach, liver and kidneys as a secondary line of medicine. So I can benefit from both treatments.

Which is more superior-the Chinese medicine or the western medicine

The Chinese medicine and the western medicine originate from 2 distinguished ways of thinking, and have their own merits. Note that I’m limiting the discussion to the Chinese medication or Chinese herbs. I have never used acupuncture, Chinese exercise, massage and diet therapy. To summarize, I have the following thoughts:

1) In western medicine, disease is an event that can be separated from the patient. Thus, any number of patients can have the same disease and can be treated in a similar manner [1]. While from the Chinese viewpoint, disease is an imbalance of Yin and Yang in the whole body and is in a unique manner by the individual patient. Restoring balance of the whole body is the focus of the Chinese medicine.

2) The western medicine is purely a science, it’s developed in the laboratory setting and based on the evidence. The Chinese medicine is more of a healing art, it is based on individual experience.

3) In the western medicine, chemical compounds are made based the laboratory examinations and used to formulate medication, but only natural herbs are used for the Chinese medicine [2].

4) The western medicine has powerful diagnosis and treatment tools, which is exactly the Chinese medicine’s shortcoming, lack of proper diagnosis and treatment tools.

5) Because the Chinese medicine focuses on healing the whole body rather than targeting the specific diseases, for severe diseases, like cancer, the western medicine is the first line treatment.

Which way of thinking and doing things is better, the Chinese medicine or the western medicine? The answer is neither. We need both. We have to integrate both into a universal approach to healing and treatment. But we are not there yet. For the time being, my experience is that the western medicine should be the first line treatment. Meanwhile, the Chinese medications can be used as secondary treatments, if needed.

[1] Ted Kaptchuk, The Web That Has No Weaver: Understanding Chinese Medicine. New York: Congdon and Weed, 1983. 2nd US edition, Chicago: Contemporary, McGraw-Hill, 2000.



My Experience with Chinese medicine-Part I

As I talked about my treatment experience, I cannot ignore Chinese medicine. Chinese medicine has been in practice of more than 2,500 years. It includes medications (草药 or 中药), acupuncture (针灸), massage (推拿or按摩), exercise (气功), and dietary therapy (食疗 ). Although Chinese medicine is influenced by the Western medicine, its ideas are mainly followed the Chinese thought patterns. While I have little knowledge about the Chinese medicine, I have much respect for it.

When I started the treatment, I didn’t think much about the Chinese medicine. I was quite sick and the Western medicine was limited. I didn’t know targeted therapy and other development in 2016. Under my mother’s encouragement , I agreed to also try the Chinese Medications or Chinese herbs. Through some relatives, I got a hold of Chinese doctor, Dr. Z. My mother and brother did their investigation through the internet and my relatives in China also approached Dr. Z’s clinic. My mother contacted Dr. Z, and described my case to him. I haven’t met Dr. Z before. I have a friend who is a Chinese doctor and told me that the Chinese medicine might not work, but it will not kill you, anyway it is all herbs. It may explain why Dr. Z can treat me without seeing me.

I started to use the herbal medicine in November 2016. I had the same batch of medicine for every weekday and I took breaks at weekends. Each batch of herbal medicine lasts for 3 months as 1 prescription. After 3 months, Dr. Z asked my mother about my symptoms, and adjusted the medicine accordingly. I have been having the Chinese medicine till now, 7 prescriptions.

Each batch of my Chinese medications consists of different plant parts, e.g., roots, leaves, stems, flowers and seeds. I don’t know their names. In addition, there is 1 bag of powder, 10-20 pills, and 1 skin patch (see Figure below) associated with each batch of medication. The herbal medicines contains sands that needs to be filtered carefully; this is a demanding task.


One thing my mother insisted, after every prescription, to ask Dr. Z what was the function of the medicine and the side effects. In the following months, she would observe me and see my signs and symptoms.

Several things I should mention:
1) Chinese herbs or Chinese medications are the only Chinese medicine I have used. I have not used acupuncture, Chinese exercise, dietary therapy and massage. So I am not to talk about them here.

2) Preparation of the Chinese medications is a demanding job, it starts with i) soaking the Chinese herbs for 30-40 minutes in the morning, ii) boiling the soaked herbs in a special pot for 40 minutes (see the above Figure), iii) emptying the liquid from medicine pot into a different pot, adding the powder and iv) boiling the mixed liquid for another 30 minutes, v) finally, filtering the sands from the liquid. Meanwhile the Chinese herbs should be boiled for the second time, and the same procedure be repeated. I’m drinking the Chinese medication in 350-400 ml each time and 2 times per day.

3) I am very carefully to eat Xalkori and the Chinese medications, both twice per day, but at separate times. Dr. D was neutral on using the Chinese medicine.

4) Chinese medications I use is very bitter. I curse at this medicine every time I used it.

5) It is not cheap to get the Chinese medications – about a full professor’s 6 month salary in China ($9,000 USD) for 1 prescription medicine for 3 months. I totally have 7 prescriptions.

Eating Chinese medications for a long time is not fun and requires discipline. That is up to me. Making Chinese medications for more than 2 years requires incredible love and patience. That is my mother.

I am always thinking whether the Chinese medicine is working or not. Is the Chinese medicine and the western medicine conflict with each other? Is the western medicine superior to the Chinese medicine or vice versa? I don’t have enough knowledge to judge. But based on my experience, I will give my 2 cents and I will blog it next time.


Part 1: Seeing my Oncologist

After one month from my diagnosis, I saw my radiologist and my oncologist, I’ll refer to my oncologist as Dr. D. They decided early on that I am not suitable for surgery because the lung cancer had metastasized and the brain tumour could be better controlled through Gamma Knife surgery, a well-established radiological procedure. My memory is hazy about what had happened at that time. I remember that my husband did the talking for me to the doctors and the nurses, who were always seemingly in the far distance from me. I didn’t know how to respond to the doctors and the nurses, and for the most part I didn’t want to talk to them.

Cancer is Merciless.

There was not much for discussion, but I started chemotherapy. I had four months of chemotherapy, once every three weeks. I didn’t feel much sickness, and I often finished chemo and went back to work. Once I was in the chemo room, the lady sitting next to me caught my attention. She was 35 years old at most, dressed very fashionably with a warm sweater, tight pants and tall boots. Later a social worker came to talk to her. I understood that she was pregnant, determined to have this baby. She never talked about baby’s father or any relatives. She was well mannered but abnormally loud. She said that she had a lot of drugs to calm her down. It struck me – under such a harsh chemotherapy drug, could a baby survive? Were there any side effects? Who would raise the baby knowing since we would not be in this world for long? That lady left a long lasting impression on me. Cancer can be so cruel especially when there are children involved.

Experience in Using ROS1

In the first visit to my oncologist, Dr. D talked to us about the genetic mutation testing or Biomarker testing, but the cost, $5,000USD, was not covered by the insurance. My husband, without hesitation, said, “do it”, and they sent my biopsy to Foundation One in the US. I didn’t know at the time what this test was for and expected nothing. One month later, we found out that I had the ROS1 rearrangement. Dr. D was quite excited as we had more treatment options. Again my husband did all the talking on my behalf as if the whole thing had nothing to do with me. I noticed it but at the same time I appreciated it. I didn’t want to do anything. I felt indifferent. I thought to myself, “without my husband, what I could do?”

Several months later (March, 2016), Dr. D told us that the chemo was no longer as effective as it could be. My report showed that the tumour in my lung was not getting smaller. So I switched to Xalkori as planned. In June, 2016, the report showed that the left infrahilar mass seen on the prior report had significantly decreased and the smaller left lower lobe nodule seen on the prior study had resolved entirely. Since then, the tumour in my lung has shrunk or remained the same in subsequent reports.

The Xalkori worked fine for me without any side effects for several weeks, but by later in spring, my platelets dropped significantly. I had to have blood tests every week to monitor the platelets. If my platelets were lower than 80, Dr. D reduced the dose to 200 mg. When the platelets even went below 60, I had to stop the Xalkori. Finally, my platelets raised above 180 at the beginning of 2017, and remain there since. My mother believes that the Chinese medicine I was using raised my platelets, and therefore saved my life. I actually started the Chinese medicine in the beginning of November, 2016. I will discuss it later in a separate blog.

My thoughts

During my three year diagnoses, I have never suffered as a typical lung cancer patient: no shortness of breath, no discharge, no pneumonia or infections. All difficulties I have are related to the brain tumour. Knowing I have ROS1 positive lung cancer saved my life. About 1% of all lung cancer patients have this ROS1 rearrangement. The wonder drug, Xalkori, totally changed the dynamics of my disease. The side effects of Xalkori have been very tolerable. In my case, I have had almost no side effects except that my platelet count was low in the beginning of having the Xalkori, but it balanced out later.

I think it is crucial to have the genetic mutation testing for every lung cancer patient. Besides ROS1, there are ALK (4%), EGFR (13%), KRAS (24%), PIK3CA (4%), and BRAF (2%) and many other gene-dependent lung cancers. There are targeted therapies, which are extremely effective for most of them. Note that the drugs on the market are inhibitors. They can buy us some time; however they cannot cure the lung cancer. Soon or later, the cancer cells will become resistant to the drug, so we should promote lung cancer research to find newer inhibitors and ultimately the cure for lung cancer, which is not impossible today. Also, we should push the government medical care to pay for $5,000USD for every lung cancer patient for the genetic mutation testing.

Mental state

I also noticed that in the first 2.5 years since I was diagnosed, I was absolutely shut down and was not myself. Most of time, I was like in the cloud, knowing partially what had happened, but every thing happened remotely from me and seemed not important to me. I hardly cried and sometimes felt scared but not often. I never felt sleepless (I was using Zopiclone, a sleep pill, but after 9 month I stopped it because I didn’t need it.), never lost weight, never wanted to listen to music or to watch TV, hardly read anything, either books or magazines or websites. I exercised a lot to the point that it was only my daily activity, which wasn’t a part of my life before I was sick. On the other hand, from time to time, I was quite alert, silent and knowing what had happened to me, but at same time I was indifferent. I noticed that this mood lasted about 2.5 years since my diagnosed. I’ll blog it in another time.


The Journey Begins

Part 1: Why Do I Publish About My Lung Cancer?

This is the first time I’m writing a blog. I was a professor, loved my job, worked super hard and was at the peak of my career. I am a very privately person, do not have many friends except my close relatives. My memories are vague during the first two and half years of treatment after my diagnosis. But I hope if I can write down what has happened during my cancer diagnosis and treatments, it can help others feel less alone.

I was diagnosed with advanced (Stage IV) non-small cell lung cancer (NSCLC) Adenocarcinoma (ROS1) rearrangement in June 2015, when I was 50 years old. The cancer had already metastasized to my brain. I have never smoked anything in my life, and rarely drank alcohol.

Before I was diagnosed…

Three years ago, June 20th, 2015, I got a phone called from my family physician. She told me that my brain CT scan results had been come back – I had brain cancer. She urged me to go to the ER right away where a doctor was expecting me, so I went to the ER panicked and numbed at the same time.

Several months before I was diagnosed, I noticed that I couldn’t use chopsticks like usual, a strange experience as a Chinese to not be able to use the chopsticks. Then I noticed my handwriting was gradually shrinking within each single sentence. If I didn’t pay attention, I couldn’t hold a cup of tea. My older son, who was a medical school student then, was quietly concerned and suggested that I check with the doctor right away.So I pushed for an CT scan.

I had been seeing a brain specialist for two years before I was diagnosed. My right eye lid sometimes droops. The neurologist always did checkups on my motor control function, arm and leg strength, eye sight and other sensations. I was always fine.

My first experience in the ER and the “terminally-ill patient floor”…

I remembered in the ER, the nurses took my blood, put me through a CT scan, MRI, X-ray etc. The doctor came to talk to me… When everything settled down, I was left alone, lying on the bed with all the equipment flashing and beeping. The feeling of helplessness, being nobody, losing control of my life and my body overwhelmed me. A hollow feeling filled my chest. A deadly silence surrounded me. They kept me in the ER for three days, and then sent me to the “terminally-ill patient floor”. I don’t know the technical name of the floor, but the majority of the patients from this floor were at their last stage of life. There were several patients like me waiting for their test results. There was a young man, around 25 years old, in one on the “terminal rooms”, we met in the activity room, he was like me, waiting for the final results. I somehow felt a vague sense of comfort knowing that I wasn’t the youngest one. Those days lying in my bed, I read a lot online – brain cancer, lung cancer, preparation of wills (we didn’t have one), palliative care, assisted suicide, survival statistics, diet, spirituality practice…

I felt like it took almost no time until the doctor told me I had lung cancer metastasized to brain, and I had to go to the oncologist. I could not wait to pack up my stuff and leave that place. The first day when I was sent to the “terminal room”, I learned that I could either stay there to die or die at my home. Originally, I could not imagine dying at home, but two weeks later, I seriously told my husband that I wanted to die at home. The ER is heaven compared to the “terminal floor”, but home is heaven compared to the ER.