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.'

One year!

Today marks one year Anniversary on Tagrisso and having Dr. Wakelee at Stanford as our primary oncologist

The past year has been a long and hard journey, and I didn't expect that we will make it this far. So it is worthy of celebration that we hit the one-year mark on Tagrisso. A toast to our warrior Gohan and to myself too for hanging on and hanging in.

When Gohan was hospitalized for a stroke before Christmas last year, I asked Dr. Wakelee how much time he has left and when I should send him to hospice, wondering if I had made the right decision in refusing hospice at the El Camino Hospital in September and now making him suffer from the stroke. Surprisingly Dr. Wakelee's answer was 'when you feel the caregiving is too much and you can't do it any longer'. Basically she was telling me that his days are bonus already, so if life becomes too hard for me, it is OK to let him go by stopping Tagrisso, and surely he will go.

I was perplexed. I have always thought that our days are numbered by God, why would it be in my hands. Even if is in my hands, I would not terminate his treatment unless he wants to or that he is suffering. It will not be because I can't do it any longer. If I am tired or can't, I will get help. Later, I asked Gohan when he wants to stop the treatment, he replied as long there is a chance, he will fight it and stay with me longer. He doesn't want me to be alone. We embraced and cried. However, I knew with his condition, he will not be able to withstand the chemo again, and I will not put him through one if that is the next treatment option when Tagrisso stops working. I have made that clear to Dr. Wakelee. So with no other drugs in the pipeline, Tagrisso is likely our last ride.

The small stroke has impacted his swallowing, speech and walking, but fortunately through hard work he has recovered from most of it. Up until now he has only experienced minor soreness in his left arm from bone mets but thankfully he is recovering well with radiation and physical therapy. His GI problems, a side effects from the medicine has been a major stress for me because he loses weight quickly with each gut cleansing diarrhea which occurs every few days, but he forgets about the discomfort of diarrhea and constipation the next day, thanks to his short term memory loss. I would then to nurture him to gain back some of the lost weight. Rashes still cover most of his legs, he scratches it and forgets about it, leaving red marks for me to smooth over. Sadly he is losing his hearing, and his right eyesight, but he doesn't complain about it because he focuses on what he can see or hear rather than what he can't. I respect him for that tremendously because I know how hard it is to have that perspective especially when one is in such dire health condition.

Everyday there is a new medical challenge for me to manage, but he sees it as being 'served', appreciating the care that we give him. He sings everyday and loves reading jokes like before. He watches his favorite TV programs (which he was not able to comprehend from last September to this Feb.), and plays his all time favorite game, mahjong, whenever we have four players. He looks forward to Sunday services, cell group meetings, friends' visits, and going out. He loves it most when our kids come home and cherishes the chance to hold our granddaughter Savanna who has injected life to his being. The only thing that makes him unhappy is when I stop him from watching TV shows so that he would finish his meal before his nap time. So despite that he is only 60 to 70% there due to disability and memory loss, he is not in pain or suffering, and he is enjoying life.

Our granddaughter Savanna born on Jan. 9, 2017 has injected new life to Gwohann's being

Some people may think that a half life is not worth living and is wasting resources. But isn't it our goal in life to attain happiness while touching other people's lives and contributing to the society? Gohan may not be a producer any more, but he has achieved the goal in different ways. He continues to be the source of spiritual strength for me and shows how much he loves me everyday. So many people tell us how his life and our love has inspired them and changed them. At the last Sunday service, a man who has been suffering from long term depression came up to us and thank us. I was puzzled. A 6 foot 4 tall man with a gentle demeanor, he bent forward and said with tears that he is so touched and inspired by Gohan who testifies that life is worth living and cherishing, no matter what situation or condition one is in.

How about me? What I learned after becoming a full time caregiver is, as a recent Chinese news article headline reads, 'Long term care is exchanging one's life for another'. Labor work is a given, but mostly it is the emotional stress taking care of a terminally ill loved one that is taxing. I used to be energetic and calm, but now I often feel exhausted and anxious. I can feel my energy waning as the battle intensifies. I now understand Dr. Wakelee's reply. She knew the cost of exchange. So it is up to me how long I want to do the exchange. From risk vs benefit standpoint, the living should not risk one's life to save a dying person. But that is not my concern. Love is not about risk vs benefit, not to mention that we have a wonderful community to support us. I may be tired from time to time, but thankfully my kids give me reprise and my friends give me comfort, and I would rebound. I'm also fortunate to have a hired caregiver to help, and a best mom to help me, I could resume some exercise, run errands and have a piece of my own time. The main thing I gave up is my work and opportunities for various things. I have to turn away clients. I turn down invitations. However, weighing between my husband's remaining days on earth and my work and life, it is an easy choice.

So, as long he is not suffering and I am still able, we will keep on going and cherishing each day until when God says The End.

Cataract surgery did not improve vision, another problem found

As Gohan's vision continues to deteriorate since he fought cancer, Dr. Wakelee referred us to see an ophthalmologic oncologist at Stanford. After examination, Dr. Mruthyunjaya informed us that Gohan didn't have any major eye disease or tumor growth in his eyes except cataract - a relief news for us. Dr. M referred us to see Dr. Artis Montague, a renowned eye surgeon to check if Gohan is a candidate for cataract surgery. Dr. Montague said that Gohan's lens is at grade 2 on the scale of 4, she was confident that his eye vision will improve with cataract surgery just as the mass majority of her patients would. With hope, we signed on. The surgery was to perform on his right eye first and two months later his left eye. She asked if we still have the lasik record, which will help her determine the best lens for him. Gohan's lasik was done in 2001, and he did not keep the record, so she would do her best to guess. That is something noteworthy for those of you who have lasik done - ask your lasik doctor for a record now when she/he is still in practice. 

Dr. Artis Montague doing eye exam to determine suitability of cataract surgery 02-13-2017

The surgery did not happen until four months later in June because Gohan was hospitalized in April for a pneumonia as a result of a flu. The surgery went smoothly, although it is still energy draining for Gohan. I have gotten used to the doctors and nurses' reactions, when they first saw Gohan's medical record - a mixture of amazement that he is still living life as usual (as evidenced by getting the cataract surgery), sympathy and compassion. It is definitely a challenge for them to perform any procedure on Gohan because his health condition is so complex.

The post surgery care was not hard, only requiring diligence in using three different eye drops four times a day, but it still add extra tasks to our already busy caregiving schedule. We hoped that our efforts would lead to a better vision for him, hence, a better quality of life. He would be able to enjoy the scenery of mountains and redwood forest that he so loves. So when in the one week post op appointment, Dr. Montague found that his vision did not significantly improve due to an underlying problem, we were very disappointed. 

Excited to get cataract surgery on his left eye for the prospect of vision improvement 06-13-2017

With the new and clear artificial lens that is now in Gohan's right eye, she can see that a major portion of Gohan's retina has degenerated, hence, limiting his vision. As we discussed further, I came to the realization that she has not done her due diligence in reviewing the report and the scan result done by Dr. Mruthyunjaya in January. She pulled up the OCT graph from January which showed 75% degeneration. The condition is called degenerative myopia and can not be cured, and most likely will progress. The disease was caused by having nearsightedness for many years and the globe of the eye was stretched for too long as such the retina was stretch too thin. Now that is very disappointing news. Dr. Mruthyunjaya did not informed us about the disease, nor did the other ophthalmologists that Gohan has seen. I have found some doctors only want to talk about the good, not the bad in Gohan's presence. I also wonder if the disease was set off by the many cancer treatment that he has endured.

I asked Dr. Montague if she had known about the degeneration earlier, would she have recommended the surgery. She said she would have because it would bring in more light which will brighten his vision.  She comforted us that the cataract surgery has slightly improved his vision from 20/100 to 20/50 with glasses. He will not get 20/20 vision, but he will see better. However, she does not recommend surgery on his left eye implying the limiting factor to his vision is not his lens but the degenerative myopia disease.

Receiving OCT scan to track his degenerative myopia 06-21-2017

I felt her advice is contradicting, so I plan to consult an optometrist or an ophthalmologist for the next step or what we can do to slow the progress of the disease which may lead to vision loss and blindness. At the mean time, the initial disappointment has waned as days go by, and we are back to before, content with a blurry vision which Gohan seems to have grown accustomed to.

The forgotten burrows

Today we received a notice from ETrade that an account that Gwohann has at ETrade has been inactive for a few years, therefore, by law the money in the account will be transferred to California state unclaimed property division if he doesn't take action by September 15. That was a surprise.

I was not aware of the existence of the account so I asked Gwohann about it, but he doesn't remember it either. He used to remember everything that is related to numbers and money, but he no longer does, a fact that I am trying to get used to. Now I am handling things that he used to do for our household, such as tax filing and account balance, things that he has been doing since we married with pleasure and self motivation.

The ETrade account was under his name only so I can't do anything with it. His login ID on the file that he gave me doesn't work either. Luckily he can still correspond with the agent on the phone and gives me the authority to handle the matter on his behalf. Evidently, Gwohann has not touched the account that used to be a company stock option account since 2009. There is another account that has only cash in it also has not been touched since 2012.

This is the second institution that I found that Gwohann has accounts with but that he had forgotten after his memory was impacted by cancer and the whole brain radiation. In the past, as a financially responsible man, he always makes sure that we have money for emergency. I knew he would tuck some money away also to make sure that I don't spend it all :-). Maybe there are more hidden money out there. So I teased him that he is hiding money from me and asked where else he hid it. With a mischievous look on his face, he replied '狡兔三窟‘ (A Chinese four words idiom "Jiao Tu San Ku" meaning "A wily hare has three burrows").  We laughed and I poked him as a punishment. However, we both know that he had forgotten where all the burrows are. We will just have to wait when the burrow steward notifies us in its due time.

Recharged for a long run

Enjoying a getaway at Tahoe with my high school friends

It has been nine months since I left our house for a getaway. Now Gohan is stable enough, I feel I can leave him with the caregiver. My caregiver also feels more confident to take care of him alone. So I called my dear friend Lisa whom I have known for 44 years since freshman year in high school. She has given me an open invitation to stay at her place at Tahoe. We set a date. Yet, various issues kept popping up, including the MRI of Gohan's left arm.  It was only until two days before the trip that I finally confirmed that I could go. I am so grateful that Lisa and the other two friends who are working accommodate my unpredictable schedule.
Tahoe is absolutely beautiful! The mountain and the water are so calming. The air smelled of aromatic pine and crispy snow. I could feel my body relaxed and recharged. However, unfortunately I was sick the third day probably due to stress. My friends took care of me while I lied in bed. It is funny that even when I had to lie in bed, I felt relaxed. It was nice to be pampered for a change. My friends joked that it is good that I got sick in Tahoe instead of at home. Thankfully, I was able to recover in six hours and enjoy the final day with my friends. The time on the road was fun too. Imagine four over-50s (Ok, near 60) women chatting away in the car.

The snow capped mountain and the pristine clear water of Tahoe are soul calming

Nonetheless, it takes a team's work in order for me to take a break. Our daughter Christina and her husband Jimmy came to stay in the house to supervise and help, including preparing meals and accompanying Gohan to Sunday service. While they were at work, my HS friend Jamie drove Gohan and our caregiver Kevin to outpatient physical therapy sessions, and also brought lunch takeout for them. Our neighbor Teri came to walk our dog Riley. Our cell group member Mitchell and his wife came to pick up Gohan to attend cell group meeting on Friday evening. Entertainment was also planned. Three friends came to play Mahjong with Gohan on weekends. So if counting the uber driver that I used for one of Gohan's trip to PT, it took a team of 11 people to give me a getaway for four days! Gohan had a good time too. I could hear the joy in his voice when we spoke over the phone, mainly because Christina and Jimmy are home. He loves having our kids home. He also joked that he was getting a break from me too. Haha. So all is good.

After I got home, our caregiver was clearly tired and left for his weekly break. I decided to try letting Gohan sleep on his own that evening to see how it goes. At 3:30 am in midnight, I was awoken by a weak voice calling for help. A few seconds later, I heard Gohan rang the caregiver bell. I ran to his room. His face twisted in pain, he was having a diarrhea and wanted to get up but couldn't. Due to the targeted therapy -  Tagrisso that he is taking, he has diarrhea often but never in midnight. He felt embarrassed and apologized for the mess. My heart hurt. I always feel heartache when he apologized for his ill condition. I told him there is no need to apologize and that we are in this together. I helped him take a shower and get changed, I then changed his bed sheets. I made electrolyte drink to help him rehydrate. By the time he went back to sleep, it was close to 5 am. Having been in a combat mode with adrenaline hight, I was already wide awake and couldn't go back to sleep. So that night I only had 3 hours of sleep, like the night before I left for Tahoe. I thought to myself - vacation was good, but the reality is that he is still ill. Murphy's law seems to apply every time when my caregiver is not around to help. Nonetheless, it was good that I was recharged with the short getaway. My new energy was put to use right way. So clearly I should go for breaks more often.

Left arm MRI - inconclusive findings

Dr. Wakelee examined Gohan's left arm

Gohan has been feeling soreness (he does not like to use the word 'pain' ever since he fought cancer) in his left arm since November. It started in his lower arm but travels up to the upper arm intermittently. We have brought it up to our oncologist but she thought it was muscle strains. Advil reduces the pain from 4 to 2 in the scale of 10.  As time passes, the soreness persists and sometiems wakes him up at night. I have learned that pain that doesn't go away is suspicious of something bad. So I requested for a MRI of his left arm. Dr. Wakelee wanted to do a Radiograph instead because she thought the soreness was a result of stroke and she didn't want to make Gohan go through the MRI, a safe but stressful procedure. Unfortunately she called me on the day of X-ray result and said we need to do a MRI because there are abnormalities. I went online to read the report, the radiologist noted that the abnormalities suggested metastasis. I was depressed and had a good cry, because only a few days ago I happily told my friends Gohan's health seems to have stabilized and I felt I finally could breathe for the first time in six months. 

As I felt distress, I remembered Pastor Huang I-Chen's wife, Irene, recently has been urging me to practice praying in tongues. So I did that day. Surprisingly, I felt relieved and edified as the Bible said we would when we pray in tongues. 

"The one who speaks in a tongue builds up himself"  1 Corinthians 14:4.

"Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words." Romans 8:26

I practiced it a few more times the following day. I felt regaining my strength and was ready to fight again. 

Gohan has done MRI scans countless of times, he knew what to expect and what to do. However, his experiences does not make the procedure more pleasant. The loud bangs of the MRI machine are deafening, he said, as he lay in the MRI chamber for one to two hours.  It would have been easier if he could sleep, but he has to stay awake the entire time otherwise he may unknowingly move his body making the images blurry. 

The MRI scan of his left arm took 1.5 hour, longer than expected because he had moved his arm despite ever so slightly, therefore the technician had to retake some slides. I knew he was tired because it had been a long day. 2 hours of dental work in the morning and MRI scan in the afternoon. Getting to the clinic took 45 minutes. He had only 30 minutes of nap instead of 1 to 2 hours as he usually needs.  We ate packed lunch in the waiting room of radiology department. The day was rushed and stressful, but he did not complain. He still thanked me and our caregiver for helping him. Every time he thanks me, I would let him know that I thank him too for being a wonderful husband to me and a great model for all of us. 

The MRI report was inconclusive. The 7 cm 'lesion' that was noted in the X-ray of his upper arm was 'nonspecific of cancer' despite that there is 'a tiny spot that is suspicious of early metastatic focus'. So Dr. Wakelee said she would ask an orthopedic oncologist at Stanford to look at the image and get back to us. She advised to monitor his soreness and do another scan in a couple of months to compare. She still thinks Gohan is doing better clinically than before. 

A few days later, we got a call to go in for a MRI of his forearm. Evidently the last scan was only done for his upper arm. I got an appointment for mid April. 

Although the problems are not solved yet, I let out of a sigh of relief. We still have time. 

Walking!

This is a day to remember. For the first time in six months Gwohann can walk by himself! It was like when I saw my one-year-old kid walking toward me for the first time, my eyes were wet, and I couldn't stop laughing. It takes faith, hard work and a never-give-up attitude to come to this point. I know there are more challenges ahead of us, but I have learned to cherish everyday and celebrate every success. 

Long term disability leave begins

Given the poor prognosis that the doctor gave us six months ago, with much grief I didn't expect Gwohann will live past the short term disability leave (STD) which I initiated for him last September.  So when I received the call from MetLife, the administrative company for the Mentor Graphics disability insurance, that Gwohann has used up six months of STD benefit, and he will start long term disability leave (LTD) benefit. Despite the 40% cut in benefit, I was ecstatic because I realized that we have made it past six months!

Under the LTD plan, the monthly LTD benefit will be combined from three sources of income to make up for the 60% of Gwohann's salary:
1. MetLife - max benefit 40 months (calculated based on Gwohann's age), with the deduction of the following government disability benefits
2. California State Disability benefit - max benefit 52 weeks.
3. Social security disability (SSD) benefit - max benefit 6 months.

Because the government benefit takes about six months to get approval, MetLife will pre-pay the LTD benefit to meet 60% of Gwohann's salary, with the condition that we will forward MetLife whatever benefit we may receive from the government. MetLife requires us to sign an agreement that we will apply for the government benefit and will appeal if denied (SSD denied 90% of the applications). Because the application process is so lengthy, MetLife is afraid that their insured will not follow through. So MetLife wants their insured to use a third party agency (integrated Benefit Inc.) to apply for SSD and will pay for the agent fee out of the payment we may receive from the federal.  If we don't use the agency, we will remit the full payment anyway, so it is to our best interest that we use the third party agency.  It is interesting that there are companies make a living by applying for federal money for people. The SSD website even has pages advising how to use an agency.

So I have a lot of paperwork to fill out with each institute (MetLife, Cal State, SSD, Integrated Benefit, Inc) in order to get the LTD benefit. My challenge is finding a long stretch of free time so I don't have to keep reading the forms over, but I shall finish them soon.

How about medical insurance during LTD leave? We can stay on Mentor Graphics healthcare benefit for six months, after that we will use Cobra, which premium will be about 120% of what we are paying under Mentor Graphics. Thank God we can afford it.

Dental defence

I still remember when we lived in Texas many years ago, our dentist asked Gohan for permission to take photos of his teeth, because he has never seen anyone's teeth so perfectly aligned and healthy without any dental work. So the photos were taken, and every time we walked into the dentist office, we would see Gohan's teeth smiling on the wall. Gohan's teeth were so strong that he uses them as tools albeit against our dentist's warnings. He uses his teeth to pop open soda caps, to crush ice cubes, and to open anything that he can not open with his hands. In fact, he would use his teeth first before he uses his hands. 

Dr. Windsor Wu, our dentist of 25 years, was shocked to see Gohan's four cavities

So when our dentist Dr. Wu told us that Gohan had four cavities, two of which were so deep that are at risk for root canal procedure, we were shocked. Gohan had only skipped one semi-annual dental cleaning in last August, when his health had suddenly spiraled downward. But he has not felt anything strange with his teeth. After discussion with Dr. Wu, we learn that the reason for his cavities were 1) lack of saliva which was caused by chemotherapy and the whole brain radiation, both of which damage the salivary glands. Evidently, Saliva has antimicrobial effects and is critical in oral hygiene. 2) food trapped in his teeth for an extended period of time and became an incubator for bacteria growth. He had lost some of his senses in his mouth due to his stroke in Dec. and couldn't feel the food residue in his mouth. I had to check his mouth periodically to make sure there was nothing left in his mouth before he naps or sleeps. So the four cavities were most likely developed after his stroke, three of which were on his left hand side, the side where the stroke impacted.

Gohan who had perfect teeth since youth, had developed deep cavities in mere few months

Thankfully we have a wonderful dentist who teaches us how to put up a dental defence with products and procedure that were designed for 'very high risk' patients. Now after every meal or snacks, Gohan follows a 5-steps regimen to reduce his risk for cavities, which include electrical brush, prescribed tooth paste with high percentage of fluoride, floss, gum brush, baking soda rinse and xylitol rinse and spray. The regiment takes three or four times longer than the common daily dental hygiene, therefore taking time away from his already precious waking hours. But I have no doubt that Gohan who is well known for his perseverance will do it diligently to regain his dental glory back!

The regimen to fight off cavities

Sleeping handsome

Like everyday since late August, I kiss him and gently pat his cheeks, but he does not wake up. I wiggle his toes and pat his body from head to toe, but he still stays in his deep sleep. I shake him, turning him from side to side, and remove his blanket. After a few minutes, his hands started to move. I continue to shake him and call his name, "Gwohann, Gwohann", apprehensively increasing my tone. After several more minutes that seems like eternity, he slowly opens his eyes, and looking at me, he smiles. I breathe a sigh of relief and kiss him again before helping him to get up. Thus starts a new day for my sleeping handsome.

Time is precious as he sleeps 18 hours a day, wakes up three times a day

Gwohann's health deteriorated suddenly and rapidly in mid-August. Only one week after our daughter Christina's wedding, where he was a proud and happy father of the bride, he was admitted to the ER for frequent falls. In the following one week, an avalanche of events happened. The immunotherapy stopped working, his legs were nearly paralyzed from undetected metastasis, his occupational functioning impaired and his cancer seemed to disable his circadian rhythm, making him sleep 24 hours a day. During his ceaseless sleep, he does not eat or drink unless I wake him up.

His downfall felt like an avalanche, sudden, massive and destructive. I carried him and ran as fast as I could to a safe place. But as I ran, my steps got heavier, and I felt out of breath. Worst of all, like a skier chased by the engulfing, sliding snow and ice, I didn't know where the safe place was. Fortunately, just when I felt despair, our kids and family friends arrived and began the rescue work. Some sent meals, some ordered medical equipment, some helped with caregiving, some accompanied us to radiation treatment, and some gave mental and spiritual support. With their help, I was able to regain my foothold, however, Gwohann continued to slide down with the invisible snow. He had lost 15 lb in one month, was bedridden and his cognitive functions declined.

When asked how he feels having become dependent, Gwohann replied "I feel like a king"

Seeing my tears of grief, Gwohann said to me "Trust in God's salvation" before he fell in deep sleep again. Despite his declining health, his faith in God remains strong and has never wavered. He praises God and gives thanks every day. Although he has lost much of his short term memories and also his sense of time because he is sleeping so much, he never forgets to pray for our family and friends, including our hired caregivers whom we only knew recently. He is the Job in the Bible, who continues to worship and praise through his suffering. I maybe the caregiver, but it is his courage, spiritual strength and faith that carry me through this difficult time.

Thoracic oncologist Dr. Heather Wakelee at Stanford gave us a new hope

Running out of treatment options, we took Gwohann to see Dr. Wakelee at Stanford, who urged us to try an FDA-approved new drug, Tagrisso. After weighing the benefits against the  risks, I, as his medical care directive agent, decided to go for it. It turned out the decision would start a dramatic turnaround for him. Two weeks after being on Tagrisso, Gwohann can stand up and walk again with minor assistance. His appetite has been restored, his weight stabilized and he wakes up by himself several times a day. He chats and jokes like before. Our home care medical team and oncology team said this is the most amazing recovery that they have ever seen. Our hired caregiver was so moved by Gwohann's story and character, as a speaker she shared his story and miraculous recovery at a Tongan Christian women's conference. So you see, although Gwohann can't go out to give testimony and share God's love like he used to, his life continues to touch people.

On a short term disability leave from work, he can enjoy simple pleasure such as breakfast and lunch in our backyard everyday

Unlike the sleeping beauty in the fairy tale, whose castle was covered by brambles and thorns, and whose friends and family were put to sleep until the prince came to break the spell, my sleeping handsome was showered by love and surrounded by a lively community that supports us. He and I dance to his favorite song "What a Wonderful World" when he is awake. We look at old photos and watch family videos, reflecting on the wonderful life we have had together. Our kids take the opportunity to pay him gratitude and admiration, and show their love by taking care of him. Family and friends visit and pray for us, many of whom bring food to eat with us and do Gwohann's favorite pastime, telling jokes, so smiles and laughter abound and we have never felt alone.

Dancing to his favorite song "What a wonderful world" when my sleeping handsome is awake

When I asked how he feels having become dependent, he replied "I don't feel I deserve the service, but I feel like a king". He is still humble, positive and witty even under dire condition. So since then, every morning when I kiss my sleeping handsome to wake him up, he opens his eyes and says with a beaming smile "Good morning, Queen!" before we cherish another precious bonus day by God's grace.

Our wonderful kids and spouses took us to his favorite Banff National Park in BC in early Sept