Saturday, January 31, 2009

Shin's memorial service address

Here is the address for today's service:

Asian Civilization Museum
1 Empress Place
Singapore 179555

Please see the earlier blog post regarding road closures and parking.

Thursday, January 29, 2009

Another link to today's Today

Another commenter provided this link to an article in the Today paper.

I have to thank the journalists from MediaCorp. They have been very helpful and considerate to us, and I think have done a very thoughtful job in their reports on Shin.


Kids not flowers

We've been asked are kids invited to the service and where can flowers be sent.

Yes, kids are invited. Josie and Toby will be there and it would be good if they do not feel they were alone in this. We think we will make if fairly concise and happy enough that it won't be too much of a struggle for kids to sit though. Also there special exhibit in the next room is a kid focused exhibit.

No, please don't overwhelm us with flowers. Shin would think it would be a waste. In lieu of flowers please send a donation to Assisi Hospice (which did such a great job for Shin, more on that in a later blog), the Breast Cancer Foundation, or the Children's Cancer foundation - or any other cause you think appropriate.

And I don't mean to be unappreciative of flowers already sent. We have placed them where we placed the tree at Christmas time, and Josie said they look like a beautiful white Christmas tree.

Tony and Michelle

Shin's Memorial Jan 31st - more details

We will be celebrating our memories of Shin's life this Saturday. Shin's life was about laughing, loving, giving. It was about kids and families. To continue this, we would like to invite your children too, to join Josie, Toby and all of us in celebrating Shin's life.

The details
Terrace Room, 1st Floor, Asian Civilization Museum (there will be signs up to guide you there)
3.00pm arrive
3.30pm Pink Paddlers' salute
3.45pm Eulogies
4.15pm Video/Photos with memories of Shin
4.30pm Balloon release followed by food and drinks

There will be some roads blocked for some Chinese New Year celebrations on the day. Please see details below for both road closures and parking.

Given our open invitation, we are uncertain as to how many will be coming to Shin's service. So we will have a few chairs available for those who can't stand, but the remainder of us will be standing during the service.

In lieu of flowers Shin would really like us to donate money to the Assisi Hospice, Home Care Team. This team of people helped us so much more than we could have imagined. They came every day and phoned several times a day. They guided us and helped us to understand what to expect. They helped Shin through these last weeks in doing what they needed to assure us of her comfort. of her comfort. They do all of this for free, for all singapore families who need help with these difficult times. Please feel free to bring donations to the memorial service where I will collect them and pass them on in honor of Shin.

Road Closures and Parking
Road closure - doesn't affect Empress Place, Old Parliament Lane. Drivers can drive via High Street, to Parliament place and turn into Old Parliament Lane to ACM (Empress Place). They can exit via Fullerton Road. There is no valet parking at ACM. Places to park are either at Fullerton hotel or Parliament House (basement carpark).

Michelle, Tony & Alicia

Mandarin Links

A reader posted these links in comments, and I thought I would highlight them in a post.

Ryann de mummie has left a new comment on your post "Memorial Service":

Hi all,

Video of the news with regards to Shin donating her organs (Mandarin)

Article on (Mandarin)



Wednesday, January 28, 2009

Memorial Service

Shin's memorial service will be on Saturday at 3pm at the Asian Civilization Museum. Everyone who wishes to come should feel invited. We understand that there will be some road closures that day, so we will post more details on what to watch out for. I'd expect dress to be nice casual.

Tony, Michelle, Alicia

In Death as in Life

I guess it is fairly significant that Shin decided to donate her organs and body to research. Most readers would probably know that whether it was recycling, saving energy, promoting good health, shaving her head for a good cause or helping a child from the Ukraine, Shin always tried to encourage everyone to help out.

A camera crew from Channel News Asia just came to ask me questions about Shin's decision. They will add a segment from the research centers explaining how helpful it is. I'm amazed that Shin is still able to inspire even though she has passed.

Also, I was surprised how Josie's thoughts evolved on this issue of the past week. Last week I explained what cremation was and Josie seemed sort of scared by the idea. Yesterday, I explained to her and her friend Ciara (Michelle's daughter, and Josie's friend who was with her) that Shin had donated her organs to research and that we would get back her ashes in six months. I told her that she should be proud of her mother for wanting to help others even in her death - and not many others in Singapore do that. Josie said she wanted to donate her organs as well and her friend Ciara said she doesn't understand why more people don't do it, "they are already dead!". Shin would have loved to have heard that conversation.

I'm told the segment will most likely be in the 10pm news program on Channel News Asia. Also, the Today paper called to ask about it and said they will probably have a comment in Today tomorrow.


For a lover of words

I really liked this poem from Ali Kati. Shin loved words and I'm sure would have appreciated these.


- the title should link to it, if not try pasting this:

Tuesday, January 27, 2009

A Brilliant Life

Our Shin died in her sleep this afternoon.

She was pain free, stress free and peaceful. She did it her way!

Shin decided long ago to donate her body to science and education in order to help find something that will cure this horrible disease. Her generosity continues.

There were many, many people who helped Shin over the three years since she was diagnosed. Friends, doctors, nurses and family. Shin was constantly amazed by the love and kindness shown to her by everyone.

We are organizing a memorial service for Shin, that may be as early as this Saturday. We’ll post again soon when we have more details.

Obviously this is a sad time for all of us, but for now, everyone is holding up really well. We have openly explained to Josie and Toby as well as Michelle, Alicia’s and Katie’s children what was happening to Shin and how we should say good bye. The kids have been amazingly resilient, as well as loving and supporting each other.

We plan to share some more of our thoughts and feelings of what these past few weeks have been like for us. We thought it might give more completeness to this Blog of Shin’s. But for now we need some time with our thoughts and memories.

Tony & Michelle

Monday, January 26, 2009

Yes, No, Yes, No, Maybe!

Shin had a tough night last night. She was restless and breathless for a lot of the night. The medication was helping but not fixing the problem. With the amazing help of the team of Home Care doctors and nurses from Assisi, Shin is now sleeping peacefully.

When the nurse came in to check her this morning she found no oxygen reading or pulse in her fingers. There was no evident blood pressure in her arms and her pulse elsewhere in her body was weaker than the day before.

In the early hours of this morning I phoned the doctors to describe Shin's situation. They advised me on a plan of action to help make her immediately comfortable. The final question the doctor had was, "Is Shin confused?" I said "no" without hesitation, because I had just been having quite a lucid conversation with her. When I got off the phone I asked Shin whether she was confused, just to make sure. She said "Yes...No...Yes...No...Maybe!" and then smiled.

Shin is now sleeping soundly and is no longer under any distress. She is still breathing, her heart is still pumping. For how long? I don't know!

Michelle & Alicia

Sunday, January 25, 2009

She Is Still Feisty And Funny.

Shin is resting comfortably in her bed, with the cocktail of medication she is on working very well now to keep her calm and pain free.

Her doctors come every day to check on her. The facts are: her blood pressure is so low they can't measure it, her pulse is weak, her heart rate is high to help compensate for the low blood pressure, she still has no appetite and she is breathing 5 - 8 breaths per minute (you should try breathing that slowly, it's not easy!).

The doctors say it is a combination of the disease, the medication and the lack of oxygen that are causing her to be a little "loopy" and fatigued. But she has had some fantastically lucid moments over the past few days that have made us laugh.

She is still correcting my english when I ask her to "lay" down, instead of "lie" down. She is still getting us in trouble if we are not doing it just right. And she is still laughing at the little stories she is hearing from her family from when she was young.

So despite her condition, Shin is still Shin, feisty and funny. And she would want all of us to carry on loving and giving.


Wednesday, January 21, 2009

She did it her way

Hi, Michelle again.

Today Shin decided to increase the medication to help her breathe, and take away the pain and anxiety she has been experiencing over the past few days. This increased medication will make her comfortable, pain free and able to breathe without feeling suffocated.

I am sitting here now with Shin while she is writing notes to me about how to explain her decision to increase the medication. She wrote that "most important of all, it will leave me in a state that the kids can see me in."

We expected Shin to be immediately sleepy but she was not at all. She was feeling the relief of no pain, no anxiety and easy breathing. She was telling jokes, singing songs and playing air guitar to Painted Black by the Rolling Stones. She also sang us a rendition of I Did It My Way.

It is very important to Shin that we all know that she has done this her way. She has chosen this path to ensure Toby and Josie remember their mom as she lived. Full of energy, love, independence, wit, courage and strength - always putting others before herself.

Monday, January 19, 2009

How Shin Is Now.

Hi, it's Michelle here. Shin has asked me to update you on how she is feeling. Bare with me as I stumble through my thoughts.

Shin's condition has worsened over the past few days. Her breathing is getting more difficult and she has been very sleepy. She is rarely in pain.

Her days are spent preparing herself to be awake and lucid enough to see Josie and Toby for a few minutes before and after each school day.

She mentioned anxiety and panic attacks in her last blog. These continue. In fact, her breathlessness now has turned in to a feeling of suffocation. This in turn creates anxiety, adding further to the suffocation. She feels claustrophobic when this circle begins.

We are treating these symptoms with medication but as with everything there is a pay off. To reduce the feeling of suffocation and pain she needs medication. The same medication that makes her feel drowsy and sometimes delirious. We are working hard to find a balance so that she may be lucid enough to spend some moments with the kids without this feeling of suffocation and claustrophobia.

Yesterday we met with Shin's palliative care doctor and nurse. They were very frank with us about Shin's condition and what we should expect going forward. The drowsiness is not just being caused by the medication. It is a combination of a the underlying disease itself, a lack of oxygen and the medication. We can expect that Shin's condition will continue to worsen and probably more quickly now than it has so far. But they are confident that we can manage the pain and breathlessness so that Shin is comfortable for the time she has left.

Tony has always been a very strong and loving husband and Dad. But this strength and love has just increased exponentially. I am constantly amazed at his strength and calm in dealing with all that he faces. Toby and Josie are handling the news with as much strength as their parents. Chips off the old block, both of them.

Shin is not up for visitors at this stage. She is saving her energy for her kids while she still can. She is sure you will understand.

Her spirits are high as she faces this tough transition. She is not scared. When I asked Shin how she was feeling yesterday morning while she was in and out of sleep, she said "euphoric". That shouldn't surprise any of us.

Saturday, January 17, 2009


I just thought I should let all of you very kind and thoughtful people know why I've been so unresponsive in my communications lately, on this blog and in my e-mails.

I have not been doing so well lately. We have put a tube in the lining of my right lung to drain it - we got out one liter the first day, 600 ml on the second day, and 450 so far today, which was the third day.

The draining has had to stop each time before the doctors' estimates for the day's quota, due to the pressure it's causing on the lung. The ideal is to try to get up to 800 ml per day, but be unable to get that much each day. Being unable to get that much would indicate that the fluid is slowing down and the lining of the lung would eventually reattach itself to the lung. But at the rate we're going, it doesn't seem to be happening.

Meanwhile, I'm in terrible distress because I'm having the worst breathing problems I've had so far and can't spend time with the kids for fear of having an anxiety attack that would scare them.

I'm registered for a home hospice care service so once a week, a doctor and a nurse come to examine me and get an update on my progress. These doctors and nurses are just amazing. They are keeping me alive, and keeping both my faith in medical science and my faith in humanity alive.

We've begun to talk about whether we should move me into in-patient hospice care.

Please don't be offended if I don't answer your comments or e-mails. I can feel your good wishes. And my friend, Michelle, has flown back up from Sydney (she'd only just returned home last week when we thought I was improving) to be with me and she is helping me go through my blog comments with me. So thanks again to all of you who are sticking by me through all of this. I know I have to do it, but you certainly don't.

Friday, January 16, 2009

Scariest Moment So Far

I had the scariest moment of my life yesterday during what was supposed to be a fairly easy, routine procedure to drain fluid from my lungs. It turns out I had a lot of fluid in the linings of my lungs that was making it difficult for me to breathe.

We'd known that for a while now, but my oncologist thought it wasn't quite enough yet to warrant drainage. Maybe she thought it was too risky while I was still getting chemo. Yesterday, we got one liter (1.06 U.S. quarts) out of my right lung alone, in under an hour I think. That seems like a lot of unwanted fluid to me.

So here's the scary moment: After the draining tube was inserted into my right lung, the radiologist had stitched me up, and one of the attending staff was dressing the wound, I suddenly felt like I was suffocating under a massive load, as if somebody were stepping on my sternum so I had to gasp desperately for every breath I took.

I also felt sharp, stabbing pains on the right side of my back. But the worst was the suffocation. I've always been claustrophobic, so this was just unbearable to have to gasp for air.

My blood pressure and pulse went way up. Tony told me later that my pulse got as high as 135 at one point, which is very high for me. All my life, I've had a freakishly low pulse in the 60 range . And my oxygen saturation level fell as low as 88 at one point. It was usually around 92 when I was having simple breathing problems.

And all this time I was panicking, I felt as if nobody could understand what I was trying to tell them. One of the nurses went out and got some hot chocolate and crackers to offer me (at the doctor's suggestion), which indicated to me that we were very much on different pages of the book when it came to understanding the situation. We were reading different books, in fact. In different libraries. On different planets. You get the point. I can joke about this now that it's over but at the time, it was truly terrifying.

Then it hit me suddenly... and this was the really scary part... this could be the END. I could actually end up dying from complications during this simple procedure and I'd never see Josie or Toby again. I'd never see my friend Michelle again. That's when the terror of it hit me.

Thankfully, after what seemed like ages, the radiologist moved the tubing around a little bit (it was off by about three centimeters too close to the sternum) and it started to feel better.

The mistake, in addition to the incorrect placement of the tubing, was in draining too much fluid too quickly. My oncologist said later that we should've drained only 500 ml a day, not 1,000 in one quick, fell swoop. That sudden release of fluid shifted organs about and moved the heart (not very poetic in this context, I'm afraid), hence the tight feeling of suffocation on my sternum and chest.

As for the sharp, stabbing pains on the right side of my back - I figured that one out myself. That must've been the post-procedure pain after the local anesthesia and numbness wore off. Once I knew the source of the pain, I was fine with it. The suffocation and breathlessness, though, that's something I still have to deal with. That phobia might just continue to haunt me for the rest of my life!

Thursday, January 15, 2009

God. Still?

I'm still receiving quite a few comments from readers trying to convince me there's a God, and to "find Jesus". I suppose they're appealing to my presumed terror and desperation at the thought of dying, thereby making me more vulnerable to a deathbed conversion.

During the past three years of having cancer, I've posted a number of entries on this blog where I thought I made my views on religious issues fairly clear. So to those of you who have started reading this blog only recently, may I save us both some time?

Go to the top of this blog page and type into the SEARCH BLOG field on the left side the words "God", "religion", "afterlife", and any other religious topics you're interested in knowing my stance on.

If, after reading those entries, you still have some questions, please feel free to ask and I'll do my best to answer. I've always been very open about my views on religion and I won't change that now. Thanks for sharing your thoughts with me, but no thanks to the proselytizing, please.

Wednesday, January 14, 2009

How To Talk To The Kids

Now that we've decided to stop chemo and opt for quality over quantity of life left, we need to talk to the kids about the very real possibility of losing their mother sometime soon.

We've been very open with the kids so far, talking about my cancer in front of them and answering their questions whenever and whatever they ask. Other than complex medical details, we haven't kept anything from them. We've had more discussions with Josie than with Toby, simply because she's older and able to understand more of what's going on.

Josie is turning six soon, but she's pretty precocious for her age. She's broached the topic of death, God, and the afterlife with me - all this out of the cancer context. Since my cancer has progressed, she's started asking questions specifically about my death: "Will you still be my mommy after you die? Will you still love me after you're dead? Where will you be?"

My main concerns are that Toby and Josie feel safe and secure, that they feel they'll still be taken care of even after I'm gone, and that they didn't do anything at all to cause my death or cause me any pain. That means I have to be careful not to yelp when Toby jumps on top of my abdomen where my liver is struggling, or gasp too loudly as Josie tries to drag me by the hand to show me something.

They might look back on little things like this later on and wonder if they contributed to my death. Can't have that on their innocent little consciences, can we?

Do you have any suggestions about how to talk to kids this age (three and five) about the possibility of losing their mother?

Sunday, January 11, 2009

Your Comments

Some of you have remarked that I'm not posting your comments. That's true. I don't have the energy to edit and post them all. But I'm still receiving and reading them, so please continue to provide feedback. I'll post the occasional comment if I feel there's a reason to do so (and it requires no editing). Thanks for your understanding, kind thoughts, and encouragement.

Saturday, January 10, 2009

Decision To Live

No more chemo. That's my decision. I'd rather "bear those ills [I] have than fly to others that [I] know not of." The chemo route is too much of an unknown, more so than just letting nature take its course.

The emotional decision would be to keep trying chemo. The rational decision, based on statistical odds, weighing of risks, logistics of timing and other reasoned factors, would be to stop chemo.

Now the big project is to keep my liver going for as long as we can and keep my body strength up for as long as we can. I say "we" because this is a joint project to keep Josie and Toby's mother alive. This is not about me, making me happy or comfortable or keeping me alive longer just so I can say I "fought the good fight."

What does that mean, anyway - fighting the "good fight"? Does it mean persisting with every chemo drug available, battering the body's natural's defenses until it just can't take it any more? Does it mean sacrificing quality time that could be spent with family in exchange for bragging rights that I "never gave up" and tried every chemo drug available, even if they left me dead while still alive?

Judging from some of the comments from readers, I think there's some misunderstanding among people, usually people who either have not been touched by cancer themselves in any way, or who have had a family member with cancer but who have no sympathetic understanding of what that family member experienced. These are the people who consider it giving up when a cancer patient decides to stop treatment in favor of quality life.

I know I've made the right decision because I feel at peace with it. When I was thinking of trying chemo again, I was uneasy and felt like I was taking risks with Toby and Josie and possibly taking their mother away from them too soon.

If I didn't have kids, I'd risk more chemo. But I have Josie and Toby to think about. It would be irresponsible of me to play around with their mother's life, risk killing their mother and steal what few months they could still have together.

Stopping chemo doesn't mean I've given up. I'm now going to put all my efforts into researching alternative, natural ways to strengthen my liver and my immune system. I'm open to any and all suggestions as long as they don't involve money, psychology, or religion (the Axis of Evil).

I'm going to live. Maybe a little longer; maybe a lot longer. I'll do it my way, and I'll do it for Toby and Josie.

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."

Tuesday, January 6, 2009

Relics Of The Past

If I were going to live to see Toby and Josie to adulthood, I'd save everything - their baby clothes, their artwork, even some of their feeding bottles and dishes. I know Tony won't hold on to these things for the kids after I'm gone. It'll be too hard trying to move all this stuff around whenever they move to a new house.

My father is a bit like me, or, I should say, I'm like him - a bit sentimental. The most precious gifts I have from him are a drawing that I did in kindergarten, which he'd kept for me all these years, and some tape recordings of me when I was about six years old. I love it that he kept those for me. They mean more to me than any gifts I've ever received.

I'd like to do the same for Josie and Toby. I want to save their artwork. Tony says I should just choose a few drawings, but I've already tried selecting some and I just can't bring myself to throw anything out.

Some of the things I did give away, I'm now regretting. For example, my wedding dress. It wasn't a proper wedding dress. It was an off-the-rack dress I wore to the little religious ceremony we had at my brother's house for the sake of my religious family. He's a pastor so he conducted the service. Anyway, that dress went to the Salvation Army, along with a bunch of other clothes I figured I'd never wear again. But now I wish I'd kept it for Josie.

But then I wonder if I'm leaving behind things that Toby and Josie will just consider junk someday. I might think these things have special meaning, but what if Josie and Toby just feel obligated to keep them out of guilt?

I, for one, would be tickled to see the remnants of my baby and childhood days, especially everyday items such as my feeding bowls and baby clothes. I see photos of some of the outfits I wore as a very young child and I feel as if I remember them. Some of them are so timeless, I think Josie would wear them now if I still had them.

One of my favorite articles of clothing ever was a thin red cardigan that my mother used to wear when she was in college. I got hold of it during my college days and wore it all the time. There was nothing special about it - just an ordinary, plain cardigan. But I just loved the fact that it had been my mother's. I can't find it now and I'm bummed. I wish I could leave it for Josie.

Do you wish you could see some relics of your childhood days? The clothes you wore? Your favorite toys? Favorite books? Your first feeding dish and spoon? Maybe someday your own kids will be curious about these things as well. You should set aside some of these things to present to your kids when they're adults; they might get a kick out of them. Who knows? They might even be able to use them for their own kids.

Monday, January 5, 2009

Letter From An Ex-Colleague

I recently received a letter from a girl I worked with at CNBC. She was my News Assistant - bottom of the food chain, treated like dirt and paid a pittance. I recently reconnected with her and she told me she had good memories of me, which surprised me. I thought nobody at CNBC liked me because I annoyed people with my expectations and requests.

People were always complaining about me and once, I almost got fired for working my team too hard and expecting perfection. I was baffled. This letter from my colleague made all those bad memories fade away so I wanted to include it in my blog for Toby and Josie to read some day.

This is the letter from my ex-colleague:

I remembered how you were always very determined to get things done right. When there were times somebody said something couldn't be done, you were going to find out why even if it meant we had to tread through uncomfortable waters.

I would be shaking my head and thinking, "Oh no, no one's going to like her very much because she's being way too insistent and people don't usually like it when they're told they're trying to take short cuts. And that was what it usually was. You said it like it was because the product mattered. The work got done well and I learned. People had to be responsible for their work.

I think you were able to do that because you had truth on your side. You also had a curious innocence because I realised it wasn't because you were trying to corner anyone -- you just wanted them to do what they should have been doing.

Once, I remember, I came to you saying something about how one of the editors refused to make a correction in one of our packages [TV news reports] because of some reason or other. You were puzzled and didn't think the worst of them. You were just genuinely perplexed.

You said, "Let's find out why he can't and make it happen for us." You got up then and there and confronted the dude! Haha. I remember thinking, "Wow she has balls." If it had been me, I would have dropped it and bitched about how folks are just lazy.

When X and Y told me about your blog entries and how you were battling it, I remember thinking, yes, that's Shin. Yep, Shin. No sulking, no pouting, no blaming anyone -- you handled it for what it was.

I remember you were clinical but also passionate. Very unusual attributes. You used to tell me honestly what you felt I was doing wrong and I never felt like you were attacking me or putting me down. It was that straight-forwardness... that honesty I remember the most. Not many people listened to me then. You did.

Oh Shin, I remember how to not be afraid when I was doing interviews. How excited you were when I told you that I was having fun. You showed me how to write better. How to think TV and how to even schmooze! It was all done with a frankness that was refreshing for me.

In life, I think, not many people get an opportunity to express how they really feel about someone. I am glad I have this chance. The cancer, the fact that you are dying allows me to say what I've always felt and carried with me. It's sad that it has to be this way... but it does not discount my true feelings.

I'm not saying all of this just to be nice or make you feel better. This is also for me. Your kids should know what a remarkable woman you are. I'm sure you have your frailties, your vulnerabilities and your whatever it is... your flaws. Everyone does. But I know only one Shin Na. And that Shin Na taught me a lot about how to cut through all the crap and see things for what they really are.

I know I should have said all these things before you left CNBC! But how could I? Maybe I didn't have the words then. Maybe I didn't realise the impact until after you had left CNBC. Maybe I didn't think it was important.

Z came to take your place [after you left CNBC] -- and boy, it was hard adjusting to that! She was a lovely person but goodness gracious -- they were hard on her and she didn't know me from jack. It was awkward. Back to being with people more occupied with niceties; they end up being meaner than they probably mean to be. And I wasn't very good with communicating. Insecure, maybe.

You know Shin, there are a lot of people out there who've known you and are following your blog entries. They might not write but I believe some of them probably think the way I do -- that's the Shin I know. Feisty. Brave. Curious and almost unnervingly innocent.

I haven't been honest about so many things in my life... so, this hits home. You are the genuine article. Tell your kids that's what this friend sees.

Sunday, January 4, 2009

Stories About Me

Toby and Josie love hearing stories about when they were babies. I think all kids do. I'm one of them. I'd like to know what I was like in high school, college, my twenties. I have my own version of me, of course, but I'm finding lately that others have different versions.

For example, I've gotten in touch with some former students of mine. It was my first job out of college and I was just twenty-one; my students were fourteen and fifteen years old. I have some terrible memories of disasters in my classroom. One incident was so awful, as soon as the class was over, I got in my car and drove to the airport, thinking I'd just escape.

But now these and other former students tell me that I was one of the best teachers they ever had. They don't seem to think I was a disaster. They've changed my view of the four years of my life I thought I might have wasted in teaching. I wasn't sure I really made any impact on my students.

Same goes for friends and ex-colleagues. And especially boyfriends. I thought I was pretty awful on that front. Some of them say I was, but they've forgiven me and we have since become good friends. Strangely, almost all of my former bosses and ex-boyfriends are still good friends of mine, some of them after almost twenty years.

Now I'm eager to track down as many stories about me as I can. I want to dig up memories that people in my past have about me. Maybe I didn't waste most of my life after all.

It sounds a bit self-indulgent, but I'd really like to hear stories about incidents I might have forgotten, to color in gaps and fill in outlines. I'm leaving this blog behind for Josie and Toby, and I'd like these stories to help them know something about their mother.

So those of you who have any stories about me that you think Josie and Toby would appreciate, please tell them here. If you don't feel comfortable posting your stories in this public forum, you can e-mail me.

Someday, Toby and Josie can ask, "What was my mother like?" and all your stories will help them see me. Thanks.

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.