Saturday, January 3, 2009

No Surgery; Tough Decision

We went to see my oncologist yesterday to discuss what to do next about my treatment. "We" meaning myself, Tony, and Michelle, my chemo buddy friend who's flown up from Sydney to be with us through this tough time.

It turns out the latest liver ultrasound shows progression of the cancer, with growth in both the size and number of tumors. I had another chest X-ray and there's a bit more fluid in the lining of the lungs but not so much that I need them drained at this point.

My inflamed gall bladder is adding to the pain and nausea caused by my failing liver, the cancer, the chemotherapy, accompanying drugs, or some or all of these. But due to my condition, it would be dangerous to have any surgery so we will not be removing the gall bladder after all. Instead, I'll stay on antibiotics and other medications to try to ease the pain.

For now, the changes in medications over the past few days seem to be working and the pain is now at least tolerable so that I can get out of bed and spend some time with the kids reading books or watching movies together.

So this is the conclusion: the current chemo combo has stopped working. We need to decide whether we try another chemo or stop treatment and just work on easing the pain as much as possible to give me a decent quality of life.

The danger now is that whatever chemo we try now could kill me, with very little chance that it would even work - 20 percent according to my doctor; even less, in my opinion. We'd have to try it for at least two or three cycles, which would take six weeks. During those six weeks, I could have very toxic side-effects and very low quality of life or I could die from the chemo. Then I'd have wasted the last two months of my life for nothing.

If I choose not to have any more chemo, my doctor estimates my liver would last another two to three months. Humans can live 24 hours without liver function so that would mean I'd have two to three months of life left. But without the chemo, I might have a better quality of life.

The tricky thing is that we don't really know any of this for sure so it's really just a guessing game at this point. A very high-stakes guessing game.

My main concern is to get back a quality of life that will allow me to be the mother I want to be for Josie and Toby, even if it's for only a short time. I don't want to spend months more trying new chemo drugs if they'll keep me from my kids.

I've had a bit of an eye-opener in the past several weeks. The pain and nausea were so crippling and debilitating that I wasn't myself. I was in bed most of the time and missed the holiday celebrations. The worst thing was, I turned on Tony. I started losing faith in him, my doctors, in myself. I became a different person. This is what constant pain with no end in sight can do to a person. I won't go back to that. That's not the wife I want Tony to remember; that's not the mother I want my kids to remember.

I remember a line from a movie I saw a long time ago. "Steel Magnolias", I think it was called. The main character risks her life to have a baby after she was told by her doctor that giving birth might kill her. She says, "I'd rather have a few moments of something special than a lifetime of ordinary."

I'd rather have a few more months of life with my family than many more months of just watching them from the sidelines. I want to be a positive contributor to this family, not negative energy. Or as my friend Michelle put it, an asset, not a liability (she has a finance industry background).

Our next meeting with the doctor is next Thursday. We'll decide then whether I'm going to try more chemo or stop treatment.

3 comments:

lisacc said...

I have nothing really to write except how very sorry I am that you are so ill and facing this difficult decision.

Over the past months you have become a beacon to me, I am uplifted by the way you write and even what you write, despite your immense struggle, and the thought of you not being able to write like this forever is unbearable (not that I would want you to write about this forever, I long for you to get well!)

The thing I hope for you most is that they can get your pain and nausea under control, so your life is more comfortable and you get the quality time with your family that all of you deserve.

Re snapping at Tony, and the entries where you posted about feeling guilty because you snapped at Josie or whatever. Well, it's remembering the last times that my mother was cross with me that I now treasure. Because that meant my mother was still my mother then, she still had her fighting spirit, and it was stronger than the illness and suffering at that that time.

So even if your quality family time is not you feeling 100% benevolent and wonderful and good-tempered all the time, don't worry about it. It's the whole of you that your family love and will want to remember.

writerinresidence said...

Dear Shin,
Having been in the Philippines for the past two weeks, I haven't been able to check your blog till now. I am so sorry you are in pain, and I know your pain tolerance is high, so I am sure this is very bad pain indeed. I am wishing you well as hard as I can and praying that this tough decision you have before you will find itself a good outcome. I am confident that whatever you do decide - and I understand what you mean about Steel Magnolias - will be the right thing, because it will be your decision. Honestly, I can't help but still have the very best hopes for you and your family. As you yourself have said - it is also a little bit of a guessing game, and we, none of us, know for sure... Rest easy and think light, as much as you can...love n

Scott R said...

Quality.

When you were in my life for those few months a decade ago (although they felt an eternity sometimes!), the one aspect embedded in my understanding of you was your demand, and expectation, for quality. You settled for nothing less... Which of course left me high and dry. :)

Perhaps another facet to illuminate is that of dignity, and in what way dignity is informed in the days or months or years you still have.

Dignity and quality define the life well lived, in my humble opinion.

But your children will love and remember you fondly, regardless. A child's love for the mother is pure and appreciative, as is the mother's for the child.