Monday, February 26, 2018
Spiritual warfare?
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.
Thursday, February 22, 2018
Our 'True Love Blog' 最愛 ~ 簡國漢、李佳芬
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
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
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.
Tuesday, October 31, 2017
Happy landing
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| Taking the first flight since Sept 2016 |
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| Reliving his past globetrotter lifestyle |
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.
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| His brother and My nephew picked us up from the airport and took us to the Airbnb |
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| His brother is the first person Gohan wishes to see in Taiwan |
Tuesday, October 24, 2017
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.
Monday, October 2, 2017
Missing hometown
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.'
Friday, September 15, 2017
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.
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| 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.






