After the TV program about our journey was broadcasted, we have received many positive feedback and encouragement. It is comforting to know that our story has touched people and inspired many, and that the lessons that we learned through our suffering has values to others. Gohan watched the program twice, each time choking back his tears. He asked me to forward it to his friends.
The air feels lighter as we feel fulfilled by the release of the program. However, at one recent dinner after the broadcast, Gohan suddenly said that he is leaving soon because he could feel it. I was shocked because he has never said things like that before. He has always been positive and assures me that he is not going to leave me alone in this world because he loves me too much. I asked him why, he replied that he saw unpleasant things in his dreams which makes him feel that his time is up. I asked him what he saw, he said that he saw people crying at his funeral service, but wouldn't say more. From his expression, I know there are other things he saw that are disturbing him. I reminded him that in 2015 when we learned that his cancer has spread to his brain, he asked God for an extension of his life so he could celebrate my 60th birthday with me, which is only two months away. He smiled and said "yes I remembered the wish and I will stay to celebrate your birthday"
Gohan was anorexic after he returned from Taiwan in Nov. He lost interest in food and was fatigued. Despite my great efforts to make food that he may eat, he lost 10 lbs in 2 weeks, compounded by diarrhea that was caused by Tagrisso. Also, he refused to go to the hospital to do routine MRI and CT scan. He said he has no energy for scans which, in addition to commute and wait time, requiring him stay on the claustrophobic scan bed for one hour or more. Without the scan there is no way to tell whether his decline was caused by the cancer or from overexertion from the Taiwan trip. I was panic. As we all know, without food, we can not live. Food became a sore topic and evoked discord in our relationship. We haven't spoken in loud voice to each other for the past few years, but we started to argue about how much he should eat. He felt that I was controlling him. Looking back, I know it was because I was not ready for him to go.
In our Dec. visit, judging from his anorexia, a common syndrome among people coming to the end, Dr. Wakelee suspected the end is coming for him. She would have recommended hospice, but judging from clinical evidence that he is aware and functioning, she believed that Tagrisso is still working for him. She recommended palliative care instead of hospice so he could continue on Tagrisso which will keep his cancer from inflicting pain as his body gradually shuts down. No scans are needed if he doesn't want to and we don't need to go see her either. Although I knew the end will one day come, I was devastated to hear her recommendations.
I have heard that oncologists have a common trait which give them the zest to fight in a merciless world of cancer, that is, they don't give up unless the patient is in death bed. So Dr. Wakelee prescribed mirtazapine, an antidepressant that is known to cause weight gain to help improve Gohan's appetite. She advised to give it two weeks to see the effects. I gave Gohan a full dosage as prescribed, but he slept the whole day. So after trial and error, I cut the pill and only give him 1/4 of the prescribed dosage like I do for many of his medicine. His body is so fragile, and his metabolism is slow, any medicine has strong and lasting effects on him than when he was healthy.
I have learned patience in the past four years, patience in taking care him of and patience in waiting. But this time, my patience is put in test again as I waited for the med to take effect while seeing him wasting away day by day, his cheeks sunken and his body slim. Then after three long weeks, just when I decided to give up, he finishes one bowl of soy milk, the only food he would eat at that time, and asked for something more filling. The next day, he asked for more food. Gradually his appetite improved and his weight is stabilized. Subsequently he had more energy and asked me to take him to his favorite state park which is one hour away. He was so excited that he skipped his mid day nap. I was relieved and amazed because I knew how close he was to death. I thank God for having mercy on him and me. Now he could live to watch the TV program released.
So when Gohan told me that he is leaving the world, I couldn't believe it. He is not going up hills, but he is stable. In fighting cancer, stable is good progress. I started to recall the training that I had at church regarding spiritual warfare. Satan looks for people who are weak and vulnerable to attack. Also when a Christian is giving testimony or spreading the gospel, he or she became a target of Satan's spiritual attack. Gohan met both criteria. I told Gohan God only gives peaceful thoughts, He does not disturb us with negative or fearful thoughts. So the scary things that he was seeing or dreaming must not be coming from God. We went to our cell group meeting that night and asked the members to pray for him. Afterwards, he had a good sleep that night. However, two days later, before he went to bed, he looked at me tenderly and spoke softly 'don't cry when I am gone'. "You told me you will never leave me" I almost cried. He calmly replied "I have to go when God calls me home", this time without sadness like he used to. He is ready.
More than a year ago, in Oct 2016, he was hospitalized for obsessive recurring thoughts and hallucination which was caused by cancer cells and which interferes with his daily function. Fortunately with Seroquel medicine, the problem went away. I could try giving him higher dosage of seroquel but I doubt it will work because he is not talking about the subject repeatedly all day long like he used to when he was stuck. This time he only mentioned it every other day, so it is unlikely hallucination or illusion. Then is it a spiritual warfare, or is he preparing to leave? I want to believe it is the former. Please pray for us.
Monday, February 26, 2018
Thursday, February 22, 2018
Our 'True Love Blog' 最愛 ~ 簡國漢、李佳芬
I know Gohan wants to give as many testimonies as he could for as long as he lives. It was a promise he made to God. He is not afraid to open up himself as long it will benefit others. On his last business trip in July 2016 before his cancer metastasized that rendering him disabled and cognitively impaired, he hoped to appear on the Chinese Christian TV program ’the True Love Blog‘ ‘真情部落格‘, a highly regarded program among the Chinese Christian community. So when we decided to go to Taiwan to visit family and friends in Oct. 2017, I contacted the TV show and offered our story. Immediately, they replied with their interests and started the process of producing a program about us. I was thrilled because I know I am making Gohan's dreams come true.
We met the production team for a pre-interview on one day, they asked us many questions, mostly personal and private. Had we have not been on this journey, we most likely will not make our past family feud, hurt and pain known to the public. It requires us to be vulnerable. But we are ready. We don't care about our 'faces' any more. We only want to let people know how we can change and transform.
The interview and production process was an eye opening experience for us. The producer asked me to provide 3 relatives and 2 friends, one of whom must be a pastor, for them to do interview to provide perspectives to our journey. As a result, the production was an international production, with taping done in both Taiwan and US (where our daughters and pastor reside). It is also an inter-station collaboration between the GoodTV in Taiwan and U Channel in the US. I can't imagine how many hours of work have been put in to make this program. We feel extremely honored. May this program touch many people and help them see the transformation power of God and how He can change a disaster to a blessing.
"I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh" Ezekiel 36:26
We met the production team for a pre-interview on one day, they asked us many questions, mostly personal and private. Had we have not been on this journey, we most likely will not make our past family feud, hurt and pain known to the public. It requires us to be vulnerable. But we are ready. We don't care about our 'faces' any more. We only want to let people know how we can change and transform.
The interview and production process was an eye opening experience for us. The producer asked me to provide 3 relatives and 2 friends, one of whom must be a pastor, for them to do interview to provide perspectives to our journey. As a result, the production was an international production, with taping done in both Taiwan and US (where our daughters and pastor reside). It is also an inter-station collaboration between the GoodTV in Taiwan and U Channel in the US. I can't imagine how many hours of work have been put in to make this program. We feel extremely honored. May this program touch many people and help them see the transformation power of God and how He can change a disaster to a blessing.
"I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh" Ezekiel 36:26
"Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! " 2 Corinthians 5:17
Friday, February 16, 2018
A letter to a lung cancer friend
Dear Mark,
Thanks for your call. Sorry I was not able to talk to you for long yesterday. Although we have never met, it still grieves me that you were diagnosed of advanced stage lung cancer, because I know the journey ahead will be hard. I still remembered the feelings of anxiety and fear for the unknowns especially during the first few months. The non-stop treatment that follows was grueling. However, after four years of treatment**, my husband Gohan who was diagnosed of stage 4 NSCLC in Jan. 2014, survives, living a good quality of life. He has been able to travel overseas, continued to work for 3 years, is actively engaged in our community and social lives, mending and rebuilding relationship, seeing our family grow and making his dreams come true. There are also several advanced staged NSCLC patients in the Bay Area that I know who are cancer free after treatment. You can be one of them! Therefore, don't be despaired because we live in a time with advanced medicine, and there are many new drugs in the pipeline. Unlike in the past when cancer is a death sentence, now it is treated as a chronic disease, just like diabetes which once was a deadly disease.
Prayers move mountains
Many new patients like you asked me what works, I would say the first thing is prayers. Both my husband and I know that he would not be alive if there has not been prayer support from our family and friends. Our spirit were uplifted by prayers and worship when we walked through the valley of death, many times. Prayers also open doors to new opportunities, and clear our mind to see God's purpose and will. Prayers prompt our angels on earth and in heaven to take actions to help us.
No sliver bullets
In my prior post in 10/8/2015, I have listed the well known diet for alternative therapy.
http://gohanrecovery.blogspot.com/2015/10/alternative-therapies.html
Please note that we have not tried any of these diet because the diets may reduce my husband's weight and strength which is not something we want to risk taking during the treatment. I went to grad school for food science, so I don't trust any diet plan unless there is science evidence supporting it. There are patients online claiming the effectiveness of any diets, however only a few of them are patients with advanced stage cancer. You can try if you are daring, but I advise only if you will not lose more than 10% of your weight.
Also, you can find information and professional evaluation about the effectiveness and usage of many supplements and alternative therapies on the American Cancer Society website. All you need to do is search the keyword on the website.
Strong community
Thanks for your call. Sorry I was not able to talk to you for long yesterday. Although we have never met, it still grieves me that you were diagnosed of advanced stage lung cancer, because I know the journey ahead will be hard. I still remembered the feelings of anxiety and fear for the unknowns especially during the first few months. The non-stop treatment that follows was grueling. However, after four years of treatment**, my husband Gohan who was diagnosed of stage 4 NSCLC in Jan. 2014, survives, living a good quality of life. He has been able to travel overseas, continued to work for 3 years, is actively engaged in our community and social lives, mending and rebuilding relationship, seeing our family grow and making his dreams come true. There are also several advanced staged NSCLC patients in the Bay Area that I know who are cancer free after treatment. You can be one of them! Therefore, don't be despaired because we live in a time with advanced medicine, and there are many new drugs in the pipeline. Unlike in the past when cancer is a death sentence, now it is treated as a chronic disease, just like diabetes which once was a deadly disease.
Prayers move mountains
Many new patients like you asked me what works, I would say the first thing is prayers. Both my husband and I know that he would not be alive if there has not been prayer support from our family and friends. Our spirit were uplifted by prayers and worship when we walked through the valley of death, many times. Prayers also open doors to new opportunities, and clear our mind to see God's purpose and will. Prayers prompt our angels on earth and in heaven to take actions to help us.
No sliver bullets
I once attended a presentation by Dr. David Gandara, a renowned thoracic oncologist at UC Davis. He asked the audience how many kinds of lung cancer there are. The audience there were well versed in the types of lung cancer, replied '4', '7', '8', etc. With a serious smile, Dr. Gandara said the answer is 'as many as there are the patients in this room'. He explained every patient's genes composition are different, the gene mutations are different, so every lung cancer is different. Therefore, everyone responds to treatment differently. What works for one, may not work for another. My husband's case can testify to that.
The standard first line treatment for lung cancer patients with EGFR mutation, what Gohan has, is Tarceva. However, our first oncologist at El Camino Hospital strongly advised that we use a cocktail of chemotherapy instead. Why? Because Dr. Dormady has a 40+ years-old stage 4 lung cancer patient with bone metastasis, who is also an Asian and a never-smoker like my husband, has had great success with the chemotherapy. The patient's tumor shrank by 80% with the chemo, afterwards he could have surgery and radiation to remove the remaining tumor. The patient is now in his 7th year of NED (No Evidence Detected)! A great success story indeed. So we followed Dr. Dormady's hopeful advice and received the same chemotherapy. Unfortunately, the chemotherapy only works marginally on Gohan's cancer. We had to stop it and changed to Tarceva. Two years later, in September 2016, after many more courses of different treatments, Gohan was given a few weeks to live because his cancer has metastasized to leptomeningeal carcinomatosis which is a rare metastasis, and little can be done to treat it. However, after I transferred his care to Stanford (at that time, he was not able to make medical decision for himself), and subsequently received a new drug, he miraculously survived and recovered. So as Dr. Gandara indicated there is no fixed formula or 'best' treatment for lung cancer. The best treatment is a treatment that is customized for the patient's gene mutations and physical condition, so finding a good thoracic oncologist who stays on top of the newest medical breakthrough to provide care for you will be the first step to recovery. I strongly recommend Dr. Heather Wakelee at Stanford hospital if you live in the Bay Area. At the same time, keep in mind that because human bodies are so complex, even the best oncologist is half guessing what may work for you.
Alternative therapy
You will hear about many alternative medicines, many of which claimed success in beating cancer. However, since none of them have clinical studies, and most of the success are anecdotal, we don't know the odds of its effectiveness. For advanced stage cancer, I would not abandon conventional medicine and go for the alternative medicine because the stake is too high. I would also check with the oncologist before taking any alternative medicines. I have accompanied my husband to see two Chinese doctors, both of them suggest only using acupuncture to help with sleeping and relieves discomfort from chemo, not for cancer treatment. In my prior post in 10/8/2015, I have listed the well known diet for alternative therapy.
http://gohanrecovery.blogspot.com/2015/10/alternative-therapies.html
Please note that we have not tried any of these diet because the diets may reduce my husband's weight and strength which is not something we want to risk taking during the treatment. I went to grad school for food science, so I don't trust any diet plan unless there is science evidence supporting it. There are patients online claiming the effectiveness of any diets, however only a few of them are patients with advanced stage cancer. You can try if you are daring, but I advise only if you will not lose more than 10% of your weight.
Also, you can find information and professional evaluation about the effectiveness and usage of many supplements and alternative therapies on the American Cancer Society website. All you need to do is search the keyword on the website.
Strong community
Besides medical treatment, what works for sure is having a strong community to support you. The community can be your family and friends, your faith community and patients community. Do not fight this cancer alone. Your chance of survival increases significantly if you have a strong community. It is never too late to build one. My husband and I are fortunate to have a community that sustain us with love and kind deeds which are critical to his recovery. If you don't have close family who can provide care for you on a daily basis, I suggest that you hire a private caregiver.
In the following I have listed four patient communities which I have participated in the past. I highly recommend that you reach out to them. You will find patients who may have similar background and conditions as yours, whose treatment and journey can be served as your references. However, it will be helpful if you find out your cancer molecular profiling such as EGFR, ALK, ROS1, or KRAS, etc, so you can communicate with other patients on the same page.
Inspire.com - an online patient community where you can ask questions, share your story, and hear other patients' journeys. I have found many tips on treatment and managing side effects on this forum
CancerGrace.org - a patient online community with doctors answer questions. If you want the information about the newest drug in layman term, check this forum. The founder Dr. West is an oncologist who dedicates his career and life in helping lung cancer patients recover.
Stanford lung cancer support group
Meet first Wednesday of every month at Stanford cancer center - open to the public, you don't need to be seen at Stanford hospital. A new topic is discussed every month and an expert in the topic area will give a presentation and answer questions. A great place to ask the expert. The group is small, no more than 15 people. A great place to meet patients in person, but most patients don't go consistently, so it is unlikely you can build a long term relationship here.
Lung Cancer Living Room by Bonnie Addario Lung Cancer Foundation
Meet third Tuesday of every month from 5:30 pm to 7:30 pm at San Carlos and also through the livestreaming - Every month a professional in the lung cancer treatment and research will give a presentation and answer questions. The group is about 30 people. Dinner provided. Over half of the attendees are veterans patients who attend the meeting regularly. The community provides hope and support, however, one also becomes keenly aware of the devastation of living with lung cancer because every month there will be announcement of the names of the people who no longer can attend the meeting because they have passed away.
https://stanfordhealthcare.
New Hope Chinese Cancer Care Foundation
A great support community for Chinese
http://www.newhopecancer.org/
A new lifestyle
To give us the best chance in beating cancer, we need to make changes in how we live our lives. I am sure you can identify at least one area that you want to make changes, be it in diet, exercise, stress management, or emotion management. I encourage you to make changes as soon as you can. If you don't know how, I suggest that you read "Anticancer : A New way of Life" by David Servan-Schreiber.
A joyful heart
A joyful heart is good medicine, the following article explains why
https://imcwc.com/html5-blank/a-joyful-heart-is-good-medicine/
A new meaning to life
Last but not least, I hope you will find time to explore the spiritual aspects of your recovery. Whenever we have a life changing event or disease like this, we examine our lives and find new meanings. If you don't know God, I encourage you seek Him. He has all the answers for you. Along the journey, my husband has transformed to a new man. He used to be wary, stressed and not happy. Now he has joy and peace in his heart. I hope you will find the same too.
I hope this letter gives you some guidelines in starting this life-transforming journey. If you have any questions, please feel free to contact me any time.
May God's strength and wisdom be with you.
May He heal you and restore you.
Sincerely,
Jacqueline
**My husband has gone through one year of targeted therapy Tarceva, 20 rounds of chemotherapy, 12 rounds of immunotherapies, 22 sessions of whole brain radiation, humerus bone radiation, 5 sessions of spinal radiation, stroke treatment, and now on 3rd generation targeted therapy Tagrisso.
New Hope Chinese Cancer Care Foundation
A great support community for Chinese
http://www.newhopecancer.org/
A new lifestyle
To give us the best chance in beating cancer, we need to make changes in how we live our lives. I am sure you can identify at least one area that you want to make changes, be it in diet, exercise, stress management, or emotion management. I encourage you to make changes as soon as you can. If you don't know how, I suggest that you read "Anticancer : A New way of Life" by David Servan-Schreiber.
A joyful heart
A joyful heart is good medicine, the following article explains why
https://imcwc.com/html5-blank/a-joyful-heart-is-good-medicine/
A new meaning to life
Last but not least, I hope you will find time to explore the spiritual aspects of your recovery. Whenever we have a life changing event or disease like this, we examine our lives and find new meanings. If you don't know God, I encourage you seek Him. He has all the answers for you. Along the journey, my husband has transformed to a new man. He used to be wary, stressed and not happy. Now he has joy and peace in his heart. I hope you will find the same too.
I hope this letter gives you some guidelines in starting this life-transforming journey. If you have any questions, please feel free to contact me any time.
May God's strength and wisdom be with you.
May He heal you and restore you.
Sincerely,
Jacqueline
**My husband has gone through one year of targeted therapy Tarceva, 20 rounds of chemotherapy, 12 rounds of immunotherapies, 22 sessions of whole brain radiation, humerus bone radiation, 5 sessions of spinal radiation, stroke treatment, and now on 3rd generation targeted therapy Tagrisso.
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