This is fever # I lost count!

Hello everyone,

I hope you all had a good time voting and celebrating Mother's Day!

As far as I am concerned, I am alien citizen on this planet called Earth and this country called Singapore. Am I an apathetic Singaporean? I don't know. Probably even worse. Is there such a thing called "Apathetic Human"? That might be a fitting term for me.

It's a strange strange feeling I have been developing through the years of fighting cancer, especially of late.

Everything around me seems to be so disconnected and unrelated to my life purpose and yet, I am still part of this whole process. (Yes, you got it - I am officially INSANE.) Haha... I grinned.

I find it ridiculously hard to function as a normal human being. Someone said I have an old soul. Is that what it is? Is that what an average 50 year human is feeling and thinking? Hmm, I don't know really. I don't even know if I can put down in words adequately how I feel inside.

Here's a scenario of how it feels to be me.

While everyone else was going on and on around me about Election Day and who's better and what's bad, (Please don't misunderstand me - I am not complaining. In fact, those discussions provided a great source of distraction for me each day and it's interesting to know what is going on around me even though I don't feel part of it.) I was anxiously praying that Char's pain would subside and she would be able to walk and play again. It's important how the General Elections will turn out because it will determine the future for my kids. Yet, what future will there be for my Char if I can't find a cure for her...

The feeling is surreal. Relatively, compared to Char's life, everything else seem so insignificant. And the insignificance is increasing with each passing day at such an alarming rate, I don't even know how to make sense out of this life anymore. This questioning of life is as tough as the physical battle of the fight against cancer itself.

A lot of times, I feel this is as much a trial for me, as it is for Char. The physical war is draining but the mental battle is as unforgiving.

In the last 4 months of 2011, we have lost so many, so many precious babies. As I am typing now, so many of our friends in America are without their precious child, many of whom we have come to care and love during our stay in NY. It's devastatingly painful and heartbreaking. They are family that you wake up each morning to, have dinner alongside, played Bingo, shoulders I cried on... Neuroblastoma is so cruel... On some weeks, we lose as many as 3 precious kids.

And just last week, we lost a teenager in KKH. One moment (Saturday), I was talking to his mom as we were inpatient for blood transfusion and he was well. Well, not as good as your normal 16 year old boy but it's as good as he can be for someone fighting cancer. He was diagnosed just last year June and he relapsed this February. His tumor responded to chemotherapy and that's wonderful. But he was fighting an infection from zero immunity. And we got admitted for fever on Friday, barely a few days from I last saw him. Saw that he wasn't inpatient, was glad and thought he went home for a well deserved break. (He had been inpatient for months). Shockingly, I heard another mom said he had passed a few days ago. NO! :-( Not another one! It's too much to bear.

Everybody will die and that's the one thing that no one escapes from. But why, why is it so hard for me to learn to live with it? How does people who work in the medical world deal with death on a daily basis and yet find enough strength and courage to plough on?

There are fewer and fewer blogs that I read these days because many of whom have become angels in the last few months. I used to read to follow on how our friends are coping, learn of the latest clinical trials, and how they overcome the side effects... The knowledge I gained are invaluable. Most importantly, I was holding on to hope as I hear of triumph stories and miraculous healing. Lately, I've been reading of how they deal with own grief. It scares me silly. To actually feel the pain and devastation from just their words, a thousand miles away.

While I cursed and cried with some moms, I also draw a tremendous amount of inspiration from some of the greatest moms around. There's a particular mom I share an affinity with. She is so good at transforming her thoughts into words, the anger, the numbness, the pain, and most of all, the cursing feels so darn good. When I read her words, I am always tempted to just cut and paste her words here. She is the one that I think will make a great partner in crime with me when I want to go around town defaming cancer! www.rockstarronan.com

Caryn Franca, on the other hand, is the one who provides the strength and inspiration I need so badly. The motivation for me to not dwell in my numbness and sorrow. Instead, she reminds me to get up and continue to fight. www.caringbridge.org/visit/francafamily. Above all, she reminds me that I have a life to live, a life that her Nick had fought so hard for...

I couldn't help but feel guilty seeing her Nick. Nick is the one who is facing the beast head on and had never once complain what life had thrown at him. He just kept picking himself up and moving forth, with every obstacle thrown at him, seizing every moment he had in his short life. How does he even do it? I know I will never have his determination and courage. Look at me now, I am not even facing this beast head on, and I already feel beaten and drained. He fought for 6 years while we have been on this journey for only one third of his, yet I am already a weathered old soul who has lost my entire direction in life. I question myself numerous times. Why am I feeling so lost? Why am I allowing despair and hopelessness into my life so easily? Why am I feeling like I can't carry on in this constant state of sadness and helplessness?

HOW does one do it? The one answer that keeps popping up is LOVE.

Love for life. Love for someone so precious you would exchange your life for his or hers. Love for your own children.

I love my children so very much. Hence, I will have to crawl if it comes to that. For them, I have to, right? I read The Rescue by Nicholas Sparks and a particular phrase struck a chord in my heart.

How do I want to teach my children to face adversities in their life?

I cried. It hurt. Never once in my life had I imagined that I would be showing these tremendous amount of weakness in front of my children. This is not the mother role I envisioned as a kid. I wanted to be the mother who is laughing, living and loving life. I don't need my children to be scholars but I need them to be able to always look on the bright side, no matter how tough life is. I want to show them that even though their father doesn't want them and me, we can still make the best of what we have. Life is about falling in love and falling out of love and it doesn't matter how hurt we are, we move on because it's the journey and not the destination that matters. I want my kids to be able to fall madly in love and still pick themselves up even when love doesn't end well. It's all part and parcel of life. I embrace the fact that we once loved and that's all it matters. And I did it, didn't I?

But what happened now?

I am always in tears, as much as I hate it. I simply can't control it. This is the mother that Jase and Char have now. What am I to do? I even lost my love for life. How than can I show my own kids to love life? Everything seems wrong. Will I be the very culprit that ruin my children's lives instead of cancer? Am I truly going to allow cancer to suck the very essence of life from me? Is it too late for me? Can I still be the mother I envisioned for my children? The mother who laughs, lives and loves life despite everything that life has thrown at her.

When I think along this way... My survival instinct kicks in. I refuse to let cancer steal my baby away. I refuse to let cancer rob the mother that truly belongs to Jase and Char. The mother that laughs, lives and loves.

But yet, wouldn't this be an unnatural person if all I could do is to be one for the sake of wanting to be one, instead of just being one.

Hmm, do I make any sense now? Probably not huh? This is a rambling entry written for myself more than anyone.

It looks like a scene out of the movies where I have an angel and a demon standing on my head, each fighting to control my mind. And that's what's going through my head now. I am having this internal war within my head, trying to right my course towards hope and light. Finding every possible reason to convince myself to look on the bright side, to carry on, whether I like it or not, whether I want it or not. And more importantly, I have to carry on in the right way, the way I have always envisioned... The way I need to show my kids...

I'm telling you, its insanely tough. Everything is.

We are now inpatient at KKH. Came in for a consultation and platelet transfusion on Friday which turned into fever the moment we stepped into the ward! And for 2 days, we were working so hard to bring her high temperature down! Ironically, last night, I found myself trying desperately to bring her temperature UP because 35.8 degrees is too low! Just how much more fun can life throw at us huh!

I wanted to scream "Bloody Hell" so badly. However, I am reminded of the fact that unlike me, a lot of my friends are without their precious babies while I am playing with Char's temperature, bringing it up and down, feeling ridiculously insane. Nevertheless, while I know I should smile and be grateful that I am fretting and worrying about Char's temperature, it still just isn't easy! How does one even find the heart to feel grateful when you are so worried that you feel your heart can stop any moment?!?! And yet, I am expected to feel that and do it.

Medical Front
Charmaine's fever has subsided thankfully and we will probably be inpatient until Wednesday. She is still having pains. Leg pains and tummy pains but thank god, the morphine is doing it's job in keeping her pain within bearable levels. Of course, she tends to be in a certain level of discomfort throughout because the pain never really goes away. However, my little fighter will grab every minute to walk and move whenever she can. I sincerely believe it's your prayers that have carried us through. Thank you.

I've wasted last week of my life unable to function and hence, as a result, no one else seem to be moving along. In medical or should I say in life as well, one thing I have learned is while you trust your doctors to do their job, one needs to always work on it yourself as well. It's like what they say - not to depend entirely on others but ourselves in all situations. I'm not advocating you to doubt your doctors but I believe that it's for everyone's interest that we work together as a team.

In short, this translates to me dragging my slumped soul up and get my butt moving! It's time to start knocking and banging on doors again!

Oh God, I am so exhausted, physically and mentally. But hey, Charmaine only has me. And I am not the one suffering in pain so who am I to say that I am exhausted? Really, Cyn STAND UP and move on!

Love,
Cyn mommy