Fighting spirit and joy in this journey

I took a picture this morning of this saying in my desk with a vase of freshly picked roses from the garden. If Kibs could see this and read this saying, he would be nodding his head and agreeing and then tilting his head to the side, purse his mouth and then smile, his usual sunny smile. I call it now his "patented signature" smile.

So... "Find joy in every journey" ????? What joy??? And I would have said WTF! (silently and in my head only, of course). I have this "journey" saying hanging in my office wall because it is one of my favorites...only that it does not seem to make sense to find any joy in this journey of sickness, sadness and pain for Kibs and the family. His condition has turned from moderately bad to very bad now.  When Jojing brought him back to the hospital last Monday, the doctors found out that he has "hepatic encephalopathy". This is a worsening of the brain function because the liver is no longer processing normally and so the toxic substances have gone up to this brain. That was why he was acting very lethargic, confused and had slurred speech on Sunday. And his liver is now overrun with cancer cells and the damage to his liver is irreversible. :(

Jojing says the doctors are still hopeful though this hepatic encephalopathy can still be arrested and not worsen and Kibs still get his brain function back. Hence he has all these needles and tubes on both arms for the medicines, a nose tube for his feedings and oxygen for him to breathe. The lung xray showed his liver pushing up his lungs now hence his need for oxygen to aid in his breathing. And he is in constant pain. Dad, who has been so brave and holding it together these past weeks and has visited with Kibs everyday, has now showed some cracking because I am sure he cannot stand to see Kibs in pain with all the medical intervention being done on him. He told me that he wants to take Kibs home and just take care of Kibs himself. :(  Of course he denied saying that when Jojing asked him as that is not a feasible option at all for Kibs who would be needing 24 hour medical care now. It was just a very pained 79 year old parent feeling helpless he could not do anything to ease his son's suffering. Kibs now knocks off to sleep most of the time but from time to time wakes up for a few moments and still understands even if he cannot speak.  Kibs had to have restraints on his wrists because he was pulling out his nose tube and was so restless...restless because he is in so much pain.  But like all medical treatments, the goal is hopefully for the patient to get better or if not better, at least prevent the condition from worsening further. Only that it will involve all the tubes, needles, medications and pain. So I would like to rationalize that  this pain now for Kibs might equate to some hope for him to at least revert back to being lucid and alert and not lethargic and confused.

It is obvious that Kibs is fighting this. Maricel, a dear family friend, who visited Kibs yesterday reported that Kibs showed a lot of fighting spirit by trying to sit for her visit, managed a smile and nod and wanted to talk.  His brain may have become foggy but he seems to still understand and know what is going on around him. So there must still be hope for my brother's brain ....but the spirit might be willing and strong...that is evident now with Kibs. Only that his body is not. That is the reality.

So we come back to "where is the joy" in all of this? None at all. That would be me answering this question. If hypothetically we were to ask this of Kibs himself, given his  normal positive and optimistic outlook, he would contradict me and say there is still joy in this Big C journey. And he need not say it but knowing him, I am positive he is happy to feel the love and to see and know his family is rallying around him to support and care for him, he gets joy seeing his cousins and friends visiting him and knowing people are praying for him and thinking about him. Just like Maricel's visit to him yesterday, he insisted on making the nurse prop him up in bed amidst his tubes and restraints so he could see Maricel and try to interact with her, even if he could not speak. I am sure even if he was in pain then, he was still happy to see her visit him. Kibs, ever the social creature will not  let his illness and pain stop him from interacting with his visitors even if it is now beyond his strength and speech. He always liked to be around people, especially if it was hanging out with friends and cousins. In short, he is the real "tambay" kid. Being around people excites Kibs and he is in his element in a group...a social creature by nature.

Maricel told him about my blog and she said, he smiled. Social creature again. And he had her relay a message for Mommy and me...to let us know that he loves us.

So I dedicate the saying with the beautiful roses to my brother today. I would think he would want me to see some joy in this battle too. And with his own fighting spirit still evident, it is just right to still see the good things happening amidst the bad things the family is journeying in now. Hope, faith and the image of my brother's signature smile (in my mind and heart) will help me through.