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.