In Memory of Gohan

After a courageous battle with cancer for the last four and a half years, GwoHann Jain peacefully passed away at 64 years of age on June 8, 2018, surrounded by his family at home in Cupertino, CA. He will be remembered and missed as a God-loving man who brought passion and dedication to all aspects of his life, including family, career, and ministry. He cherished his family & friends on both sides of the Pacific Ocean and spent much of his life traveling between America and Asia for work and to see his loved ones. He delighted in making people smile with his witty humor and boisterous spirit. We will forever miss his contagious laughter. A memorial service for Gwohann will be held at River of Life Christian Church:

Gwohann's Memorial Service

Sunday, June 24, 2018 at 2:30PM

River of Life Christian Church

1177 Laurelwood Road

Santa Clara, CA. 95054

For more information or to make a contribution, please visit Gohan's memorial website https://www.gohango.org/

簡國漢經過四年半的奮勇抗癌後，於2018年6月8日，在深愛他的家人圍繞下，於加州庫比提諾市的家中安詳辭世，享壽64歲。國漢在生活各個層面熱忱且忠堅，做事負責認真，珍愛親友。在忙碌的跨洋公務往返之間，所到之處，也必探望他的家人和朋友。我們將懷念他愛神愛人的赤子之心，他逗笑的機智幽默，以及他那超有感染力的笑容。家屬將於 2018年6月24日下午2時30分在美國生命河靈糧堂舉行追思禮拜。

簡國漢追思禮拜

2018年6月24日（禮拜天）下午2時30分

美國生命河靈糧堂

1177 Laurelwood Road

Santa Clara, CA. 95054

更多資訊，送花或禮金，請點擊國漢的紀念網站 https://www.gohango.org/

Spiritual warfare?

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. 

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

"Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! " 2 Corinthians 5:17

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

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

https://www.inspire.com/

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. 

http://cancergrace.org/

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. 

https://stanfordhealthcare.org/events/lung-cancer-support-group.html

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.org/events/lung-cancer-support-group.html

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.

Happy landing

Taking the first flight since Sept 2016

 The flight went much better than I have imagined. Gohan was so happy. I noticed that he was reliving his old intercontinental commuting life following a routine he used to have. He looks so comfortable in the airplane. He eats by himself not needing much help while watching movie. I only need to check on him every so often. 

Reliving his past globetrotter lifestyle

No diarrhea. Thank God! Only minor bathroom issues that I was able to manage. I was hoping to get two business seats across the aisle, so I didn't need to stand up to see him. But I could only get seats having him sit in front of me. However, it works out. when he needs my help he would stick out his hands to tap at the top of the seat back.

I also asked the flight attendant to come get me if he got up to bathroom by himself while I fell asleep. Sure enough he did. I would have been so stressed had we not sat in the business class where I could get more help from the attendants.

His brother and My nephew picked us up from the airport and took us to the Airbnb

His face brimming with smile when we touched down. He feels well, and wants to get out of the airplane as soon as we can, just like the old time. That made the planning and flight in which I only slept for a couple of hours worthwhile.

His brother is the first person Gohan wishes to see in Taiwan

Once we are in Taipei, he was so energetic, only sleeping 10 hours a day. He says that he doesn't want to spend his vacation in sleep.  It is very amazing how much energy he suddenly summons once we landed.  However, I was pretty tired with jetlags, coordinating his meeting schedule and furnishing the Airbnb. Not sure if it is typical in Taiwan, the Airbnb apartment is spacious and up-to-date, but has minimal furnishing of all the daily stuff that we need. Thinking positively, busy schedule helps me adjust to the jetlag sooner.  Seeing how happy he is, makes me happy too.

All set to go back to Taiwan

I realized I’m crazy to take this trip, so many things to bring. The meds although most important, is only a small part of my packing. I have been working hard to get things ready for our trip. It feel likes moving Geohann’s bedroom with us. Our relatives will procure or rent medical equipment for him. I have also made arrangements for a temporary caregiver in Taipei. I’m 90% ready for the trip. The 10% will be packed before departure. 

However, I was frustrated and worry a couple days ago because I have been searching for a week for an airbnb in Taipei but couldn't find one that is available for our entire stay and that also met our accessibility needs, mainly because it is so close to our departure date. 

I seldom pray for this kind of things but this morning at the Sunday service I asked God for help to find one that is suitable so we don't need to move in and out. I got home and checked again, found a new listing with 3BD/2BA. Usually Airbnb host doesn't do tour but the host agreed to let my brother see the apartment for me because I told her there is no client reviews for my reference. My brother used video chat so I could see the whole place. The place met our needs, so I contacted her immediately. She told me that she also has a son living in Cupertino and that she is a Christian (I didn't tell her that I am one). After negotiation, she dropped the price by 30%, cheaper than a 2BD/1BA that I was originally looking for. 

The apartment is located in between my brother’s and my sister’s houses whom we will be visiting often. 7 minutes driving to each. 3 minutes to Taipei 101. Many shops right around the corner. A perfect location for us! Unlike many of the Airbnb which do not allow visitors, we can receive visitors when GwoHann can’t go out. 

I know this is more than a coincidence because only 4% of population in Taiwan are Christians. The chance of meeting one is small. Also, the host said that she had three reservation requests before me, but there were some issues with her airbnb account, so she couldn't accept them. I was lucky to come just in time right when she has the issues resolved. I will be her first client. 

10/23 / After I paid the deposit, a day later she told me that she decided to withdraw from airbnb after my and another group’s stay, because she is not tech savvy and hosting on airbnb is too much work for her. She wanted to do long term lease instead. So I am one of the only two groups who will stay there during the only month she hosts on airbnb. What chance I have!

Thank God for His goodness! With this good sign, I feel more confident about the trip and trust that God will protect GwoHann and grant us a joyful trip.

GwoHann is exhilarated that we are actually going. He couldn’t sleep whole day yesterday’s after I told him the travel date which I originally withheld from him so he won’t get too anxious like before. He crashed at the end of the day and had to go to bed with only half of his dinner finished. 

Yes. We are going and I believe we will be happy that we went. 

Missing hometown

Gohan has been talking about visiting our hometown Taiwan for almost two weeks now. It is unusual that with his fleeting memories, he remembers it consistently. Everyday he would say that he is getting old (he insisted that he is not sick) and it will be his last trip, so he wants to make it before too late. However, I have been resisting the idea, still vividly remembering the bouts of diarrhea that he had during our trips to Bodega and Asilomar when there was no bathroom nearby. He had a great time getting out, but I was anxious and exhausted especially during the Asilomar trip when our kids were not with us to help. Things are much harder to manage away from home where I have all the medical supply. But mostly I am worry about the impact of the long flight and jetlag that will have on his health. People have been telling me stories of their sick relatives or friends whose health got worse after a long trip, either didn't make it back or died shortly after returning. Hence, I summoned a list of relatives and friends in Taiwan to video chat with him, hoping that they will ease his homesickness and dissuade him from international travel. They tell him that they are coming to the US to visit him. However, he would happily tell them that he is going back to see them. As a last resort, I told Gohan that we should check with Dr. Wakelee, thinking that is the best way to stop him.

So when Dr. Wakelee said "you can go! There is nothing medically that prevents you from going", Gohan laughed out loud with joy while I sat feeling defeated. Gohan winked to me 'I won!'. I shaked my head. I expressed my worry about Gohan's yoyo cycle of diarrhea and constipation which is stressful to manage during travel, Dr. W suggested to give Gohan Immodium to prevent diarrhea before boarding the plane, even if it means worsening his constipation. "Just once for the sake of going home", she said. Regarding the issue that it takes him 2-3 hours to eat one meal because his chewing muscle is weak, and by the time he finishes, he is ready to nap; she advised Gohan to take one liquid meal a day (which understandably he dislikes) so that he can enjoy more of his life.

She gently told us that it is great that Tagrisso has been effective for Gohan to keep cancer at bay, but she doesn't know how much longer it will work, so it is a good time to go home. She also reminded me that because he is on oral treatment, we are free to go, which is not an option for patients who have to be treated in the hospital for chemo and radiation. To ease my concern about medical care, she offered to contact her colleagues in Taiwan who are excellent thoracic oncologists, so they will know Gohan's condition and take good care of him should any medical needs arise.

Finally, she suggested that we do a CT scan this week to make sure his chest and left ribs (which last scan shows new mets developing) are stable before we make the final decision. But Gohan is already sure he is going, and excitedly calling his brother about the good news. In his prayer before dinner, his tears flows down as he utters 'God please help me to go back to Taiwan, I miss my homeland so much'.  Tears well up in my eyes instantly. How can I deny a terminally ill man's wish, not to mention he is my husband, even if it means negative effect to his already fragile body. I gently stroke his back and said 'we are going home.'