Good scan report, vision problems and video filming

"The report is great!" Dr. Dormady gleefully announced as he entered the room where we waited for the lung CT scan and brain MRI scan result. "The immunotherapy is working for you!" he further added. He explained that Gohan's cancer is stable after the immunotherapy treatment, there was no pseudo-growth of his cancer as expected in most NSCLC patients. His blood report also is better than the last time with every value within normal range! Praise God that Gohan's body is responding favorably to the treatment. With the great news, we will continue with the immunotherapy every two weeks to control his cancer. 

Immunotherapy #4 and #5

His quality of life has also significantly improved, as such that we can comfortably go on short trips without worrying too much about his energy level. We had gone to Portland, OR again for his work and this time we took half day off to visit Multnomah Falls, one hour away from his company. Noted that this is the first time Gohan did something other than work in the 80 plus trips he has made to Portland. Gohan had been such a hard worker, but he has learned the value of work life balance, and I am there to make sure he does it! With periodic breaks, he was able to hike 1.2 mile to the top of the beautiful falls. It was an exhilarating experience! We have decided to hike once a week in our neighborhood hills to rebuild his strength that was lost during chemotherapy.

Visiting Multnomah Falls - first leisure outing in Gohan's 80+ business trips to Portland

Incidentally, at one of the vista points, Gohan missed his steps and fell to the ground, hitting his back on the pavement. He was OK except for a sore tail bone, but I was alerted because being an athletic and agile man, he has never fallen in the 40 years that I have known him. Due to the unusual fall and also because of his recent complaint of not being able to see clearly at night, we decided to see an ophthalmologist. To our surprise, Dr. Shahinian found that his right eye has cataract, which explained for his fall as his visual field was impaired by the cloudy lens. The cataract was likely caused by the cancer treatment in particular the extended use of Dexamethasone, a corticosteroid, during his chemotherapy and brain radiation. This is a bummer because it may affect his mobility. Fortunately, a common and effective solution is available when and if his cataract gets worse, i.e. artificial lens replacement through cataract surgery. For now, Dr. Shahinian prescribed him a pair of eyeglasses to aid in his distance vision. It helps that he looks handsome in his eyeglasses which compensates for the small inconvenience wearing it. 

The enterologist checked his ears have recovered well, but the ophthalmologist found cataract

The video team for the El Camino Hospital cancer video came a week ago to film us, which gave us a taste of celebrity's life, albeit for only 4 hours. The team of four were very kind and sensitive to Gohan's needs. The director gave us instructions such as"walk slowly, ...now look at each other, ...now smile,...".  We were asked to repeat each action several times. I guess that is what is called NG and we had plenty of that. They even filmed our shoes while we walked. Looking at my worn-out hiking shoes, I regretted for my procrastination in getting a new pair. I hope that the audience will see me as a real hiker by my dirty old shoes. At the end of the filming, the team told us that they should be able to produce 1 to 2 minutes of film from the 2 hours shooting. Wow! Did we have that many NGs? Guess we can't be movie stars after all. Regardless, we are tremendously grateful and honored to be the receiver of the time and efforts of the project team. 

Meanwhile, we are merrily getting ready for the upcoming gala this Saturday May, 21!

Picked for cancer video, spiritual head of home

Great news! Gohan was picked for the El Camino Hospital cancer video! As mentioned in our last post, Gohan was recommended by our oncologist Dr. Dormady for a cancer video, which will be shown at the annual El Camino Hospital gala on May 21 this year. After a phone interview, the hospital and the advertisement agency decided to feature Gohan as one of the two patient stories! The video team will come to film us next week. We felt deeply honored and were once again very touched by God's love and amazed by His work, which is beyond our imagination.  

Gohan teaches how to be a spiritual head of home

We have also taken up new challenges in sharing what we have learned - we joined the Family Ministry team to teach 'Spiritual head of home' this quarter in our church's equipping classes. I have been privileged to witness the amazing growth of Gohan in the past two years and am proud to be his supporter and testimony. We feel propelled to share our experience and wish that more people can receive the joy and blessings we have, without having to go through this difficult cancer journey.  

 

Our trusted oncology NP Katie Khul, and Immunotherapy #3

Gohan finished three immunotherapy sessions and is feeling much better than when he was receiving chemotherapy. He is keeping up with his daily 10K-steps goal and has been going to his office to work more frequently. Hence, more biweekly infusion sessions have been planned for the next couple of months. The immunotherapy must have boosted his immune system as he is having hay fever symptoms again this spring season. He also has regained some of his abilities to taste, so eating now is more pleasurable. Nevertheless, nothing increases his appetite more than eating in the company of friends and family. Therefore, we welcome company and will be honored to have you as our guests. We can either dine out or eat in. Just let us know when you are free!

Candidate for a cancer video

Gohan got a surprise call today from an advertisement agency about a video that it is making for El Camino Hospital. Evidently, Dr. Dormady has recommended Gohan as a candidate for an upcoming cancer video. Based on the script that the agency sent us, the video is about cancer patient's journey and dream, and there will only be a few patients featured in the video. Wow! What an honor! Dr. Dormady doesn't know Gohan's wishes or much about his personal life, but he must have seen something in Gohan that prompts him to recommend Gohan out of his 1000+ cancer patients!

Dr. Dormady is our trusted oncologist

When Gohan called me from his office to tell me this news, we both cried with happy tears because we believed it is the work of God and couldn't help but feel amazed. God surely knows how much Gohan wants to be His testimony of love and of His power of transformation. We believe that He is using this opportunity to encourage Gohan and to use him as His vessel (2 Timothy 2:21). We have been sharing our story in the Chinese community, now we may go mainstream. We realize that God can do so much bigger than what we can imagine!  (Ephesian 3:20)

There will be a phone interview next Monday to determine if Gohan's story will fit the video theme. Regardless of the outcome, we are grateful for the opportunity because it is a recognition of Gohan's transformation and fighting spirit, and also an evidence of God's love. We want to tell you this news firsthand, so you can share our amazement!

New Hair and Immunotherapy #2

Gohan has a perfect round head shape

Spring is here! Flowers are germinating, birds are making nests, and Gohan's hair is forming new 'shoots'!  Soft brown baby hair are growing steadily covering his head. Praise God for restoring his hair follicle.  We pray that restoration of his healthy cells and body functions is happening everywhere in his body.

Immunotherapy #2

Gohan received his immunotherapy #2 today. We felt a bit more relaxed because there were only one bag of drug to infuse, no steroid and no anti-vomiting drugs. We will get new scan every four treatments.  Dr. Dormady and Katie told us that Gohan is receiving Nivolumab (Opdivo) as a maintenance, therefore, like most of his NSCLC patients, we may see pseudo-growth of tumors in the first scan, but it will stabilize on the second scan.  What is most encouraging is that the drug will go through the blood brain barrier to attack the cancer cells in the brain! Maybe that is why Gohan is feeling less and less numbness on his fingers.

Dr. D highly encouraged us to go travel while on immunotherapy because Gohan will feel more energy.  Hopefully, Gohan can hike again soon.  For the past couple of months, he has been feeling short of breath when walking uphills.  So instead of going to Rancho San Antonio, we have been walking around the neighborhood. Thanks to Riley, we have met all of the dogs from our block. Now with Dr. D's blessings, it is time to plan for a family vacation!

First immunotherapy and Asia trip

First immunotherapy Opdivo infusion

On the day we arrived in Asia, our insurance company approved the immunotherapy treatment for Gohan. Apparently my call made a difference! I am a fierce advocate when it comes to treatment for my husband whom I love dearly.  It is comforting to know that when we returned to the US, Gohan would be able to receive the infusion.

Having skipped a treatment session, Gohan felt less fatigued and was able to enjoy our 10-day trip in Taipei, HsingChu and Shanghai. Our schedule was tight, but thankfully we were able to see family and friends in between Gohan's business meetings. Everyone was so kind to come see us on a short notice and every gathering was fun and joyful.  We savor the hometown foods that we miss, and with loving company at every meal B/L/D, Gohan's appetite significantly increased so he was able to gain more weight. While we were in HsingChu city for his work, we stayed at his 'second home', the Ambassador Hotel, where he had stayed for work 120 times, averaging 1 trip per month, over the course of nine years before he was diagnosed of cancer.  The hotel staff, from the general manager to the cleaning maid, know him like an old friend.

                                                          Family and friends we saw in Taiwan and Shanghai

With a mission in mind, at each gathering, Gohan shared the life lessons that he learned over the last two years. Everyone was touched and inspired by him. The highlight of our trip was an interview with NEEDs radio, an Internet radio station which has 14 million listeners across China and Taiwan. Being able to share our journey and God's greatness with so many people made the trip even more meaningful. We want to thank my sister Carol for connecting us with the station.

Radio interview and work in HsingChu 

Our visit to Shanghai brought back memories from when Gohan worked and lived there in 2004 and 2005. It was the darkest time of Gohan's career. The long hours and high stress at the startup company weighed on his shoulders as he walked back to his single occupancy apartment alone every night. When the company's funding started to deplete, company politics intensified and work became a white collar gladiator fight. The substandard living condition, the cultural shock and being way from his family made life extremely challenging for him. During the two years, he developed Hemifacial spasm disease that remains even today, and plagues him during waking hours. He came back with his liver virus flared up and with 'three highs' - 'high blood pressure, cholesterol and triglycerides'. He also had shingles, a sign of compromised immune system. The worst of all, the experience left him with a wounded soul. Looking back, as a health care provider suggested, his cancer might have started then.

10 years have passed, the Shanghai cityscape has doubled in size, and it has become one of the 10 riches cities in the world.  Like the city, we have also grown, but in a different way. We see life from a different perspective and our spirit is stronger than ever. We have thrown away much baggage, and we have learned forgiveness. Hence, when we returned to China this time, we did not feel bitterness from painful memories. We saw white yulan, Shanghai city flowers, blooming among the skyscrapers, and a few birds flying across the smog, calling to each other. There was a group of elderly dancing in a small park, and Lala, my sister Monica's Labrador Retriever, played contentedly in their high-rise flat. We felt at peace.

A fresh look at Shanghai

On March 16, 3 days after we returned from Asia, Gohan received his first immunotherapy. The infusion and prep work takes 2 hours, half of the time chemotherapy takes. Before the infusion started, he was tested for thyroid functions to establish a baseline. We learned that immunotherapy attacks the thyroid in some patients, therefore, his thyroid functions needs to be monitored every other infusion. Less side effects than chemotherapy are expected, so we should have a better quality of life, which makes us hopeful and excited. We have so much we want to do and so many people we want to re-connect with. Don't be surprised if you see us in a place that you are least likely to expect us. We will live life fully.

Gohan & Jacqueline

Good scan report, immunotherapy delayed

Enjoying cherry blossom on his daily walk with Riley

We went to see Dr. Dormady today, both brain MRI and lung scan show stable disease.  As we learned through this journey, stable is good news! Dr. Dormady also confirmed what we learned from his staff yesterday that our insurance company United Healthcare is still reviewing our preauthorization for using the Opdivo, therefore we can't get the injection today.  It is a bummer. Dr. Dormady is very annoyed by the insurance companies' tactics of delaying coverage for cancer patients.  He said that Opdivo is $35000 per injection, more expensive than chemo, hence, the insurance company has been lagging in approving the drugs with all sorts of excuses.  He has requested for a peer to peer review with the overseeing doctor at the United Healthcare today, and he is confident with more push from both him and us, United will approve our case before we return from Asia.  I asked if we should do chemo instead today, he replied no need.  He assured us that Gohan's disease will not change within two weeks and encouraged us to enjoy the break from treatment.  

This is something we didn't expect, but come to think of it, this break comes timely as we are traveling to Asia for work and also to see family and friends. 

"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:9

Thanks to be God, we will surely enjoy our trip and the 2 weeks break without treatment.  

Immunotherapy - check point pathway

The drug Opdivo that Gohan will receive for cancer treatment is based on immune check point pathway PD-1 and PD-L1 mechanism.  Here are twos videos that describe the mechanism in an easy to understand way.