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| 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.
