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!
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
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！
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 typhoonwas 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
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
"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!
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!
