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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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.
[2]www.differencebetween.net/science/health/difference-between-Chinese-and-western-medicine/

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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.

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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.

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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.

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