Thursday, January 8, 2009

Russian Roulette

Today's the big day I decide about playing Russian Roulette with my life - take my chances by stopping treatment and let the cancer get me, or take my chances by trying another treatment and let the chemo get me. Either way, I don't know what quality of life I'll have until I've started down one path or the other.

By "quality of life", I mean what kind of mother Josie and Toby will have - a useless lump that can't participate in their lives, in which case, I may as well already be dead - or somebody who can at least talk to and spend some time with them.

As I said to the interviewer during the filming of the documentary about me last November, "I'd like to live until I die."

14 comments:

Anonymous said...

Shin,

I will support you to stop the treatment and just work on quality of life.

Usually the chance of the last drug is very risky and could take your life almost immediately.

My late husband had exhausted all the chemo drugs for his metastatic non-small cell lung cancer. His oncologist told him there was one last drug he could try but its risk was very high, with only 5% chance it might work.

It was the most difficult decision for us. I dared not participate in that say at all. He decided to proceed with it. The doctor gave him the dose and monitored him closely for the next 24 hours.

The next day at noon, he was still looking good and eating well. All of a sudden, he could not catch his breath and passed on.

The effects of the chemo drug took away his life within 24 hours.

Looking back, I would rather have spent a few more days with him in the hospital than to have opted for that drug.

I wish you have more quality time with your family, than to take this gamble.

lisacc said...

While my mother was quite weak and sick back in October, there was one time where she was lying on her bed, too tired to talk, and I was beside her. And she took my hand and squeezed and held it. It's the one of the lasts, most vivid memories I have of her, and I treasure it beyond measure.

That's not a reason for anyone to take treatment that causes them (and possibly their family) more pain than quality or quantity of life. But it illustrates that no matter how much of a "lump" you may feel, you are never useless or unwanted to your loved ones.

But you have the absolute right to do whatever you want to lengthen or lessen your own life. You've already defied every medical expectation, so if you've had enough or if you want to have a rest, either choice is valid. It's not pointless, and nor is it giving up, either way.

As to Anonymous, you have all my sympathy. I hope you can take some comfort from at least knowing that your husband experienced less pain and less suffering by going the way he did, although it was sooner than you both hoped. My mother had a couple of days before going sort of semi-conscious when she knew it was the end and that there was no hope. Although it means I and some other family members wouldn't have had the chance to see her again, had she instead gone very suddenly a week before, while "stronger", it would have spared her those days.

Anonymous said...

Shin,

Either way, you're going to die. Sorry for sounding so harsh.

Better stop the treatment and spend your remaining time with your children.

Mel said...

I wouldn't be so arrogant as to think I could possibly advise you on which route to take, unless (Like anonymous 1) I had some real experience of the issue. Shin - I can't imagine what you are going through at the moment having to make this decision. I wish I could make this better for you, or make you better. I know you have many friends who are doing all they can for you, and I'm so far away, so practically useless. But I would like to give you one wish. This could be anything - To donate money to a charity close to your heart, to follow up an issue or a cause for you, anything, anything. Let me know your wish at any time. I make you this promise - I will do it for you.

Mel xxxxxxxxxxxxxx

Anonymous said...

Stop chemo & have a quality life. That's what my sister chose & we all had the best times of our lives. Short but full. Seems like you have made the decision from the very beginning...

C. said...

Anonymous (second post),

What the @#$%* is wrong with you?! My goodness, some people are really unbelievable. I guess it can be hard to know that there are others out there who are people we can only HOPE to be, huh?

Shin, my heart breaks for you, knowing that ultimately, you have to leave behind two beautiful children. I am a mom, and I can't even come close to trying to imagine the thought of me doing so without wanting to cry buckets.

You are a strong, amazing woman, and the life you've led will continue to inspire/teach your kids long after you're gone. In any case, you go, girl! Fight the good fight till the end, I am (and many others out there I am sure) rooting for you with all my heart.

Thank you for sharing so much on your blog, you have inspired and taught me in ways you couldn't imagine.

C.

Anonymous said...

Hi Shin, I am in no position to offer any advice. But if I were in your shoes now, I think I would stop conventional treatment (i.e. chemo) since it does not appear to be working and try out alternative forms of treatment which could give you a better quality of life. And maybe work on building up your strength until you are strong enough for surgery (think you mentioned that surgery was not an option for now as you are too weak)? And as Mel said, if you have any requests big or small, please blog about it and we will all help in whatever way we can. Best regards.

Anonymous said...

I'd like to tell you about my father who passed away from lung cancer. He was on various chemo drugs since he was diagnosed in 2006 but none worked on his cancer.

At first, he didn't have any symptoms and sometimes refused to believe he even had cancer. But by Jan 2008, fluid started collecting in the lining of his lungs and had to be drained.

Then the cancer spread to his brain and he had no co-ordination on his left side and he was given radiation.

At one stage he couldn't eat anything and became so weak that doctors refused to treat him with new chemo. We were angry with them at that time. But we soon realised that my father was too weak to take treatment.

He lived with pain for the following months, but was bedridden and partially unconcious for more than a month before passing away.

So I think you should opt to have a quality life with your family rather than going for chemo. Wish you all the best.

Anonymous said...

Shin, you sound like you are at a similar stage to my mother. My mother has bowel cancer which has spread to liver and lungs. She has had numerous surgeries, chemo and radiotherapy treatments.

However about 9 months ago she was told that conventional medicine had nothing else to offer her. She has since being having intravenous vitamin C treatment. This has helped enormously with pain levels and definitely has improved her quality of life. I would definitely recommend Vit C treatment.

Evie said...

Dear Shin,

Whatever decision you're going to make will be in the best interest of your family, and your family will know it.

It's better to live a day than not to live at all. You'll be in my prayers.

Hugs,

Evie

Jamie said...

Hi Shin,

I don’t know what to say about your decision other than I am freaking out. I have never been more nervous opening up your blog than I was this morning to see if you had posted you decision. It breaks my heart that it has come to this. Part of me wants to scream “Don’t give up!” But I can understand that if additional treatment comes at the cost of not being able to spend time with your family, then what’s the point?

I also wanted to say I was touched by what Mel posted, and although unoriginal, I would like to offer you the same. I’d also like to give you a wish. I’m hoping that you can pick something for your kids or your husband because I’m also hoping that you can feel just a little bit of comfort knowing that this thing will be done for them (and I’d like to do something in your name to help my niece, nephew, and big brother). But it is your wish. Make it whatever you like. No matter what it is, I promise you that I will move an imaginary heaven or a very real earth to make it so. Let me know anytime. Send it by email if you want to keep it private or if you want it to be a surprise. Post it to your blog if you want everyone to see it and hold me to it.

Lots of love,

Jamie

Anonymous said...

Hi Shin, I'm really glad that a couple of other people have offered you a wish in the same way I did. Perhaps you could post an entry for people wanting to grant you a wish. Then, in the future, we can continue to report and monitor how we are doing with implementing your wishes, for Josie and Toby to see. And you'll still be continuing to do your good and making change, through us. Mel xxxxxx

FM said...

My Dear Shin,

One comment stood out when I read Haruki Murakami's "What I Talk About When I Talk About Running": 'Pain is inevitable, suffering is optional.'

I thought of you when I came across that. Whatever you decide, you know many prayers, many hearts are with you, Tony, Josie and Toby at this time.

FM

Shin said...

FM,

With all due respect to Mr. Murakami, I'd have to disagree when it comes to physical pain. When the physical pain is such that it actually prevents the mind from thinking of anything else, then suffering is certainly NOT optional.

The physical pain of running a marathon is quite different from the chronic, constant pain and discomfort that accompanies cancer and its treatments. I don't think anyone who has not suffered the latter can fully appreciate this. I admit that I didn't until it happened to me.