Monday, July 25, 2016

Documentary "To refine like silver" 煉銀歲月

One day God told Gohan that He will refine him like silver, thus began Gohan's amazing journey of transformation and restoration. We are tremendously grateful to UChannel TV for producing a documentary (directed by Shengpang Fan) about our journey. Despite that we are the protagonists, we couldn't help to shed tears when we watched the film because it reminded us once again of God's love and blessings amidst suffering. Please share it if you are touched by it!

有一天,神對國漢說要朔造他如同煉銀一般,如此開始了一個奇妙的轉化和恢復之旅。我們十萬分感謝 優視頻道 (范聖邦導演) 以國漢的抗癌經歷為題材,製作此感人的紀錄短片。我們兩個雖是當事者, 自己看了都落淚。回顧一路上,在苦難中清楚看見神的愛和恩典。若有感動請分享!



大陸親友可以看 https://vimeo.com/175628417

Tuesday, July 19, 2016

New medicines in consideration and the testing trip

My amazing mom (84 yr old) came from Taiwan to help us since June
After four months of successful immunotherapy using Opdivo, Gohan's cancer is showing minor activities under the CT scan. As a precautionary measure, Dr. Dormady advised us to see Dr. Wakelee at Stanford who specialized in thoracic cancer for a second opinion on the next line of treatment. It had been 9 months since we last saw Dr. Wakelee, she was happy to see that Gohan is doing very well. She suggested adding a new immunotherapy drug Yervoy (ipilumumab) to Opdivo. Yervoy has been approved for treating melanoma, and, in combination with Opdivo, is showing great result for NSCLC patients in the clinical trials.  Dr. Dormady will try to get the medicine approved for Gohan to use in August. 
After four months of Opdivo, we are seeking ways to increase its effect
She also laid out a future treatment plan for us in case the immunotherapy stops working for Gohan. We were comforted to know that Tagrisso, a third generation EGFR TKI, which was approved in Nov. 2015 for metastatic NSCLC patients with EGFR T790 mutation, will pass through the brain blood barrier. She is confident that Tagrisso will work very well for Gohan as well. The only disappointing news that we heard from her is that Gohan's taste functions are unlikely to recover due to the radiation damage to his brain. Sadly, after he lost his taste, eating has become a chore than a pleasure for him. I am constantly finding ways to help him eat and maintain his weight. Nonetheless, despite the setback, we felt a weight was lifted off of our shoulders when we walked out of Stanford Cancer Center that day.

Breath-taking scenery in Alaska taken from my high school reunion cruise
Feeling stronger, Gohan traveled to Taiwan for business in early July, while I took my mom on a cruise to Alaska for my high school's 40th reunion. Since I attended an all-girls high school in Taipei, Gohan accurately predicted that I would be continually talking with my girlfriends on the cruise, so the business trip to Taiwan was of fortuitous timing for him. However, it turned out that his flight to Taiwan was the most patience testing trip he has ever made. 
Due to a typhoon, Gohan's flight to Taiwan was forced to land in Okinawa  

Because a typhoon was threatening Southeast Asia during the week, it took him 48 hours instead of 13 hours to get to Taipei. In addition to waiting in the airplane for eight hours to take off from San Francisco and flying in a holding pattern around Taiwan for one hour, his flight was forced to land in Okinawa, where he was shuttled for one and a half hour to a hotel to rest, only to be bused again to the airport four hours later, where he waited for yet another five hours at the terminal. You can imagine how exhausted he was by the time he arrived in Taipei. Fortunately, seeing family and friends compensated for the testing trip. The experience also testifies his transformed character and newfound strength. As you probably knew, his famous motto before he was ill was 'I can not wait!'. Please ask him about his trip the next time you see him. He will proudly and vividly recount the experience for you.

Hats off to Gohan!

Happy to meet with family in Taiwan after the unexpectedly 48 hours flight












Tuesday, June 7, 2016

Sapphire Soiree and cancer video

After we gave the keys to the valet, we stood for a moment in front of the Menlo Circus Club. It seemed surreal that we are here as 'VIPs', according to El Camino Hospital Foundation President Jodi Barnard who personally invited us to the Sapphire Soiree gala benefiting the cancer center. The air smelled of freshly mowed lawn, crisp and inviting. I helped Gohan straighten his bow tie and with curious anticipation, we walked into the hall. Soon we heard a cheerful voice "Welcome! Mr. and Mrs. Jain!" An usher, smiling, briskly directed us to the reception to get our name tags. We wondered how she knew us. After we got our drinks, we wandered around, searching for anyone we knew. The reception hall was beautifully decorated, every corner adorned with gorgeous bouquets of spring flowers in peach, pink and yellow. Men and women dressed in elegant black tie attire, chatted cordially. Just when we came to the conclusion that we didn't know anyone there, we saw our oncologist Dr. Dormady and radiologist Dr. Sinha, whom we almost couldn't recognize because both were in tuxedos, instead of their usual white coats. We happily exchange hugs and complimented each other's appearance for the occasion. As we pleasantly chatted about the event, something felt different. I realized this is the first time that we conversed with our doctors about subjects unrelated to our health. It is nice not to think or talk about cancer for a change with the doctors who have become our trusted friends.

Our oncologist Dr. Shane Dormady and radiologist Dr. Robert Sinha

Jodi Barnard and the CEO of El Camino Hospital, Tomi Ryba, also came to greet us. Evidently they recognized us from the video that they had previewed and approved. They graciously thanked us for allowing them to film us, and we expressed our gratitude to them for including us.

The banquet was held in a huge white tent and was exquisitely decorated. Ice crystal Chiavari chairs were paired with silver rimmed white plates and beaded edge crystal platters. My favorite flowers, peonies and tulips, dressed up the tables. Mystic blue light illuminating the hall created an ethereal feeling. We searched for our table number, and were surprised to find our table in front of stage center -- the VIP table! Gohan and I looked at each other, astounded at the honor given to us. Sitting at our table were Yesenia, the other patient featured in the cancer video, Jodi, the foundation president, and two other couples who were major donors of the event.

The reception hall
Our VIP table
When the guests finished the sumptuous dinner, CEO Tomi gave a short speech about the history of the fundraiser and told the audience that this year instead of telling their doctor's work, she wanted to share the stories of two patients. She directed the guests' attention to the screen. That is when the magic moment started. The screen played the three minute film that Gohan is a part of. The audience watched in complete silence, captivated by Gohan and Yesenia's stories. When the video ended, Tomi asked Gohan and Yesenia to stand up. The audience applauded loudly, and one by one, they stood up. Eventually the reception hall was filled with clapping, almost like rain, but thunder loud. Before long, all 500 guests were on their feet, giving the two courageous fighters a standing ovation. By that time, both Gohan and Yesenia were in tears, so was I. We were enormously touched by the love and encouragement shown to us. During the standing ovation, everything seemed to move in slow motion. I saw Jodi and Tomi smiling on stage. I turned my head to the audience and noticed every men and women clapping their hands slowly and nodding their heads approvingly. I looked at Gohan, tears forming in his eyes, drop by drop slowly running down his face. It is a moment that I will never forget.




The El Camino Hospital cancer video

While the audience seemed to be immersed in deep thoughts evoked by the video, Tomi apologized for having to shift gears and announced that the live auction will begin. The auctioneer walked in with a big smile and after cracking a joke, chanted in speed faster than a jet, igniting everyone's enthusiasm. Guests bid merrily and boldly for the auction items including a Maui vacation, American Music Awards VIP tickets, a sapphire diamond ring, and unusually, a dinner with cancer center doctors. As Dr. Dormady later said on stage, "all of my patients pay a lot of money so that they don't have to see me again, but here at gala you pay a lot to dine with the doctors". It was a humorous remark but it also says a great deal about the generosity of the guests. They are here to support the cause of fighting cancer, helping patients whom they have never met and probably never will. That is true generosity.





The gala ended with a live performance by the B-52s, singing their famous songs such as Love Shack, Rock Lobster and Roam. I recalled the time, in 80s and 90s, when we first heard the songs. We were busy raising three children and building our careers. Now at the gala we are listening to the same songs, our children have grown, our careers were established, but we are battling cancer. You never know what the future holds, but one thing is for certain, that is, love prevails. It is love from our family and community that strengthens and sustains us, it is love why we are invited here today, and it is love that these generous guests come together to help those who are fighting for their lives. 

For that, we are eternally grateful.

Gohan & Jacqueline

Friday, May 20, 2016

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!










Sunday, April 24, 2016

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!



Thursday, April 14, 2016

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!


Wednesday, March 30, 2016

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!