Saturday, November 29, 2008

Another Documentary - VIDEO

This is a documentary by Singapore broadcaster, MediaCorp, for their series, "Gentle Good-Byes". It was aired on October 29, 2007. I'm featured in the third segment, in the second half.

Click on the picture to start the video. Click again to enlarge.







Friday, November 28, 2008

My Documentary - VIDEO

This is the documentary that Singapore broadcaster, MediaCorp, did about me for their series, "In The Face Of Death". It was aired on November 4, 2008. Click on picture to start video. Click again to enlarge.








Pain Expectations

I've heard this line in a number of movies where somebody is going through trauma or tragedy. "Life isn't supposed to be this hard." Or "Love isn't supposed to hurt this much."

That would make me think, "What's the point of saying that?" You're just telling her she should feel lousy about what she's going through and how she's feeling about it. Wouldn't it be easier to think that actually, everyone has a tough life and everyone feels the pain? That's just how life is and there's nothing special about you. You don't have to feel like the universe has targeted you. You don't have to feel like a victim or martyr because that's not going to improve your situation anyway.

I feel the same about my cancer pains - the physical pain, I mean. It hurts a bit. Except I don't know if this would be considered "a bit" or "a lot". Is it supposed to hurt this much? If yes, then I'll just shut up and take it. If not, I might complain about it. If I do the former, I keep my pain to myself and don't become a nuisance to people around me with my whining and complaining. If I do the latter, I don't lessen the pain; I just increase the annoyance factor for anyone within hearing range.

If I think it's supposed to feel like this, then I get on with it instead of dwelling on it. Everyone with cancer has pain. I have cancer; I have pain. Of course, I take the pain medication and that helps a lot, but it doesn't get rid of all pain. At least it's not disabling or crippling pain.

I used to think I had a high tolerance for pain. Then I had babies. For the most part, I managed pretty well but we had to call in the epidural in the end for other reasons. But the timing of the epidural was off and I felt the contractions anyway. Now that's pain!

No woman giving birth does the "Woe is me, I'm suffering so much pain, you just can't understand what I'm going through" sob story because she's not special. Every woman who gives birth feels this pain. It's universal. There's no sympathy from the galleries. We don't tell them, "Giving birth isn't supposed to be this hard; it's not supposed to hurt this much." We tell them, "Pushing out a baby hurts like hell so expect it, prepare for it, and don't expect a prize for going through it because you're just like millions of other women who do the same thing every year." Have you ever heard anybody say to a woman who's just given birth, "Oh, poor you. That must have really hurt!"

So maybe it's the same with cancer. Expect the pain. Prepare for it. Don't expect any prizes. Suck it up and maybe it'll seem normal and less painful. And if that doesn't work... pass the morphine!

Thursday, November 27, 2008

Thanks Giving Kids

We had Thanksgiving dinner at a friend's house today. In the car on the way over, I tried to explain to Josie and Toby what was so special about today. The conversation went like this:

Me: Thanksgiving is a day when we think specially about things that we're thankful for. For example... I'm thankful for Toby and Josie, and Daddy, and...

Josie (interrupting): I'm thankful for all the loving and caring people in the world!

Toby: And I'm thankful for Mommy's huggies and kissies!

Wow. Weepy Mommy moment. I end my Thanksgiving Day here with happy tears. Good night.

My Thanks List

Happy Thanksgiving to all my American friends and family!

For the rest of you... you people really ought to get a holiday like this. It's the best holiday ever. You get to stuff your face and drink all day, laze around and watch football and old Christmas movies on TV - all in the name of dedicating the day to being thankful. Good stuff.

I told you yesterday that I'd keep a list of the things I was thankful for throughout the day. This was my list:

- A good night's sleep.
- Pain medication.
- Oxygen machine.
- Tony giving me a kiss before leaving for work.
- My MacBook.
- My friend Katie who took me to chemo.
- My mother-in-law, Carol, who also came with me to chemo.
- My oncologist and her staff.
- Singapore's high-tech healthcare system.
- Funny, well-written, trashy novels.
- Chocolate croissant and hot chocolate drink - together.
- Kisses and hugs from Josie and Toby. Toby calls them "huggies" and "kissies".
- My "cough pillow".
- My friends Alan and Alison who divorced each other but didn't divorce me.
- Soft mattress.
- What-I-did-today e-mails from my friends Shelly and Deb.

Keep in mind this is just one day and the things and people I encountered during this one day. Tomorrow's list will be different. And so will the next day's. Ah! It's good to be alive to make new lists of thanks each day!

Wednesday, November 26, 2008

Little List of Thanks

Tomorrow is Thanksgiving, my favorite holiday. I could get sentimental and say it's my favorite holiday because it's a time when families come together and give thanks for all the wonderful things in their lives. But I'd be lying. It's the food I love. Roast turkey, mashed potatoes with gravy, stuffing, and pumpkin pie. If I were on death row, this would be my request for my last meal. We (Americans) have this menu for Christmas dinner as well, but I don't like all the materialism and focus on gifts that come with Christmas so I prefer Thanksgiving. Baaah! Humbug!

Usually at the Thanksgiving meal, we go around the table and each person names one thing he's thankful for. The usual list includes family, friends, good health, financial security, and so on. Big things.

This year, I decided to focus on small things. I'd spend one day making a list of things I'm thankful for throughout the day. I got this idea from a magazine, and in that article, people had things like Starbucks and hot showers on their lists. Today, I'll take a little pad of paper and a pen around with me all day and whenever I notice something I'm thankful for, I'll jot it down.

Tomorrow, on Thanksgiving Day proper, I'll post my list on this blog. I'd love it if you did the same so we could compare lists. If nothing else, this little exercise might help us remember all the little things we have to be thankful for.

Until tomorrow...

Monday, November 24, 2008

Tom's Diner

I went to university in New York City. Often after an all- night session of club-hopping, we'd stop at Tom's Diner, several blocks from Columbia campus, to eat greasy cheeseburgers, drink chocolate milkshakes, and detox a little.

One particular night (actually, it was about 5 a.m. by then), I was at Tom's with my friends, satisfying our post-alcohol food cravings while the buzz of the booze was wearing off. The diner was full of college kids, calling out to each other, laughing, joking, and having a great time being young and carefree.

I looked around me, soaking in the vibrant, party atmosphere and marveling at how fun it was to be young, alive, and eating cheesy fries after dancing all night. I wondered if I were appreciating it enough. I wondered if I'd remember this moment.

Then I played a little mind game with myself. I closed my eyes and imagined myself in the future as an old lady. I imagine myself saying, "I remember that night at Tom's Diner. I wish I could feel that again. What I'd give to be young again and transported back to that moment."

And POOF! I opened my eyes and I'd gone back in time to my college days and there I was. Suddenly, the lights seemed brighter, the fries tasted tastier, the smiles seemed smilier, everything seemed more intense.

Because I'd consciously forced myself to preserve that moment in my memory files, I can still transport myself to that night and feel, hear, and see what was there.

Ahh... Tom's cheesy fries... I can taste them now...

Friday, November 21, 2008

Mother, In Spite Of Myself

I was chatting with a friend recently about having babies and I came to a surprising realization. I never really wanted kids and I still don't. It's not kids I want; it's Josie and Toby.

If Josie and Toby disappeared tomorrow, I wouldn't want any more children. It's not the idea of motherhood that I'm in love with; it's not the day-to-day pleasure of being a mom that I enjoy; it's Toby and Josie. I wouldn't want to be anyone else's mother, simple as that.

I have many friends who were really into the whole pregnancy experience. I thought it was a very inconvenient nine months of my life. Times two. I didn't like being fat, clumsy, and toward the end, downright absurd looking. I was HUGE.

Some women even savor the delivery. I just wanted those things out of me so we could go straight to cuddle, cuddle, kiss, kiss. Skip right to baby-powder smelling infant in arms for the photo op.

And this pride in being a mother as a concept... I don't get into that either. I have no desire to be just anybody's mother. I want to be Toby and Josie's mother. Just like I have no desire to be somebody's wife just for the sake of being somebody's wife. I want to be Tony's wife.

So I realized that it's not the role or title of mother or wife I'm interested in. Because frankly, the idea of being somebody's wife or some snotty-nosed brat's mommy used to give me the willies.

But now that I have Tony, Josie, and Toby, I wouldn't have it any other way. That's made me realize there is something incredibly special about these three in my life - nobody, absolutely nobody else will do. They are utterly irreplaceable.

Thursday, November 20, 2008

My Documentary Online

Some of you have asked to see the documentary film about me online. MediaCorp (Singapore broadcaster) says the licensing fee to upload the film onto a URL is S$513 (US$336) for the first year. I think that's too much for me to spend so I'm very sorry, but I won't be putting the documentary on my site. I really appreciate your interest.

Wednesday, November 19, 2008

What's "Cancer-Free"?

A reader wrote:

"I found it puzzling as to why the cancer returned so quickly... as you had been declared "cancer-free"... unless there had been some latent/undetected remnants which had failed to be removed from the ops or by the chemo." [The reader went on to suggest my doctor had made a mistake.]

Here's my response:

I think most people are confused about what "cancer-free" means. In the U.S., doctors have stopped using the term. They now use the term, "No evidence of disease" or "N.E.D." This is because there is, technically, no such thing as cancer-free. You can use every fancy scan available in the medical world but if only one tiny little cancer cell has gotten into your blood stream, lymph system, or is hiding somewhere in your tissues, it will not be picked up, and there will still be a possibility that cancer will return some day.

A tumor needs to be the size of a pea to be detected on any scans. That's millions of cancer cells. So just imagine one single cancer cell somewhere in your body - there's no way that any scan or any doctor, no matter how technologically advanced or clever, can find a stray cancer cell. Therefore, you can never be said to be cancer-free.

If my doctor made any mistake at all, it was in being too optimistic, telling me I was cancer-free, when she should have said there was no evidence of disease. She was trying to give me hope, so I don't fault her for that. If she had given me the above explanation about why I could never be cancer-free at that point in my treatment, I might have considered her a pessimistic killjoy.

I feel sorry for doctors. They tell the medical truth and they're accused of being pessimistic. They put a positive spin on the news and they're accused of hiding the truth. I think my doctor gave me the news I needed in the way I needed it at that time. I think she really believed my cancer was gone - at least for a long, long time. She was just as confounded and shocked as I was to learn it had returned so quickly.

Nobody can guarantee that your cancer won't come back. Likewise, for people who've never had cancer, nobody can guarantee that you'll never get it. But if you life a healthy lifestyle and are lucky enough to keep cancer at bay for another twenty, thirty or more years, you might as well consider yourself cancer-free and die with good ole NED instead.

Monday, November 17, 2008

Alternative Treatments

Many of you have written to me to recommend alternative treatments. You've given personal testimonials from your own experience of being "cured" of cancer by a particular treatment. Or you've seen a loved one "cured" after doctors gave up and said there was nothing more to be done. I've read your recommendations but am not posting them on my blog for these reasons:

1) I don't want to give readers hope in treatments I know nothing about myself.

2) I don't want to send readers on wild goose chases when they are at their most vulnerable, desperate to find a way to keep themselves or their loved ones alive. I want to have nothing to do with companies that might be preying on the weak and taking advantage of the ignorance and helplessness of others.

3) There is plenty of information about alternative treatments already available on the Internet, at the library, and at the bookstores. You don't need my blog to tell you about them.

4) I'm sure some of these treatments work some of the time for some of the people. But nothing works all the time for all patients, including conventional treatments such as chemotherapy and radiation. There are too many factors at work, such as the synergistic effect of certain medications and the individual biochemistry of each patient. It's too simplistic to think you can treat cancer with any one solution, even chemo.

5) There's no such thing as "cured" of cancer. I'll write about that in another post later this week.

Friday, November 14, 2008

Blaming Doctors

It seems the first thing people want to do when something goes wrong is look around for somebody to blame. When it comes to doctors, I think we tend to assign blame more than usual because we expect them to know everything. Here's a news flash: They don't.

They learned about the human body and diseases from going to classes and reading books - the same way I learned about French deconstructionist philosophers. That doesn't make me an expert on the topic; it just makes me more of an expert than you. Doctors get their training and practice the same way a car mechanic does - by learning on the job. And doctors hone their skills the hard way, just like the rest of us do - by learning from their mistakes. Every patient a doctor has adds to his body of knowledge and experience. You are his learning aid.

People tend to put doctors on a pedestal. Maybe it's those fancy certificates written in Latin hanging on their waiting room walls. Maybe it's their air of authority or even bossiness as they order their nurses and other staff around. Maybe it's their medical language that excludes civilians from their secret society and gives them an aura of special insight and knowledge - like saying "pleural effusion" instead of "fluid in the lining of the lungs" or "dyspnea" instead of "difficulty breathing".

But the bigger they are, the harder they fall. And as authoritative and infallible as doctors may seem, when they do make a mistake, the blame and criticism is as severe as the reverence was strong while they were on the pedestal.

Do yourself and your doctor a favor. Don't raise him up so high that he'll crush you on his way down. Be realistic and work with him. He wants you to live. You want you to live. Work toward that common goal.

Thursday, November 13, 2008

A Cautionary Tale

Some of you have been asking for updates on Nadya, the four-month-old daughter of Peto, a reader of this blog. Nadya was in the hospital for heart surgery last Friday. Peto gave me the following update, which upset me very much. I think it's worth sharing with you because Peto's experience may one day save the life of somebody you love - somebody who can't speak for herself.

From Peto:

Saturday is a day I wish to forget; Nadya experienced a full left lung collapse because of negligence, complacency and bad management by the hospital staff.

Nadya was in the ICU, recovering from surgery. Thirty minutes after they removed the oxygen tube, I noticed her heart rate was going up drastically from 100 to 190, with the alarm sounding in a span of 15 minutes. I was in and out of the room informing the staff of the abnormal spike and Nadya's strange behaviour: hands flailing, legs kicking, hoarse crying and scared eyes.

I was told the increase in heartbeat was normal as she now required more effort to breathe on her own and she was probably in distress from crying, but somehow it didn't seem right to me as I had never seen those eyes before and there weren't any tears. Her voice was hoarse as if gasping for air.

As I coaxed her to calm down, I felt her head was feverish and immediately sensed that this wasn't right as her temperature had been 36.5 degrees just 30 minutes earlier. I quickly sounded the nurse again and she actually had to confirm the temperature with a thermometer under Nadya's arm pit, awaiting for it to beep, rather than a quick touch on the forehead. That waiting seemed endless and finally it beeped showing 38.2 degrees.

Luckily, a doctor happened to stroll by. I was then left standing outside as the staff spent 30 minutes in a panic, searching for a size 4 oxygen mask for Nadya. All I could see were nurses and doctors scrambling in and out the room, avoiding my eyes.

My heart sank when I saw a nurse doing a cross sign touching her forehead and shoulders as she came out. When I was allowed to go in, I broke down seeing Nadya's frail body attached to a huge mask trunk. They said there was high CO2 accumulation (up to 79?) with low oxygen. An x-ray showed full left lung collapse.

Thankfully, she is recovering well and under monitoring but I think I will be haunted by Nadya's scared eyes for a long time.

Advice from Peto:

I wish to say to all parents that you should never leave your children alone in the hospital no matter how safe you think they are. It's such an irony that all this could happen in an ICU ward and some of the explanations given by the doctors were very disturbing, such as:

- Nadya's ordeal is not uncommom after oxygen tube removal.
- We do have a mask on stand-by but unfortunately, it did not fit Nadya. And we used a hand pump while searching for the mask.
- It is understandable that as a parent you tend to take these things a bit harder although I think the situation is not as bad as you have perceived.
- Anyway, she is fine now!

All these remarks came after I told them that I hope they can learn from this experience as we could have lost an innocent life with this negligence.

- If it is not uncommon then shouldn't the tube removal be accompanied by close monitoring?
- Nadya was there for 2 days before the tube removal. The correct mask size should have been determined. What is the point of having a mask on stand-by if it doesn't fit the patient? FYI, Nadya has a perfectly normal head size for her age.
- Nadya was in distress during the 15-20 minutes it took to get the nurses' and doctor's attention, plus 30 minutes of mask-searching with the final diagnosis as lung collapse and CO2 built up due to lack of oxygen. And this doctor has the nerve to talk to me about parental over-reaction.
- The last comment is so irresponsibly shallow.

[Note from Shin: I don't like bashing doctors and nurses. I think they're human and they make mistakes like the rest of us. It's their unwillingness to admit to, apologize for, and learn from their mistakes that bothers me. A simple "sorry" would have made all the difference in the world to me in this situation.]

Wednesday, November 12, 2008

One More Year

Today's my birthday - the third one since I was first diagnosed with cancer in December 2005. Here's what I wrote in my blog last year on my birthday:

"Should I make a prediction about where I’ll be at my next birthday? I’ll still be in Singapore, I’ll still have cancer, I’ll still be alive. That sounds terribly boring. I hope I can do something between now and then to make that year worth having."

Now I have to ask myself what I've done with this past year that made it worth having. The most obvious answer is that I spent more time with my kids, but that would have been the case even if I didn't have cancer.

In terms of achievements, I think the only thing I can claim to have accomplished this past year is this blog. Without sounding too conceited, I think this blog has provided other people touched by cancer a place to share experiences, learn from each other, and just feel safe, accepted, and inspired.

Looking ahead at one more year, I'd like to set some kind of concrete goal so that on my 43rd birthday, I can look back and say I've accomplished that task. I'm just not sure what that goal should be.

I'd been thinking about setting up a breast cancer information Web site for Singapore, but I see now that there's quite a lot of information out there already on the Internet. I wanted to start a communication training program for health care professionals (after going through some terrible experiences myself), but the hospitals here have already started such a program - maybe due to my volumes of feedback?

So I'm still working on having a goal to strive for in this year ahead. I'm one of those people who likes making lists and ticking off the tasks as they're completed. I'd like to tick off a box a year from now. But I suppose I should be happy enough to be ticking at all.

How about you? What have you done with this past year that made it worth having?

Monday, November 10, 2008

Practically Positive

A blog reader wrote:

"There will be a cure. Shin, you will benefit from the best cancer drugs and survive... Your tumours will melt away and you'll still be here... Your tumours WILL MELT away, they will, don't worry."

My first reaction was, "Hey, isn't that denial, the first of Kubler-Ross's Five Stages of Grief?"

I have cancer in my brain, liver, lungs, bones, soft tissue, lymph nodes... practically everywhere but my toes and eyelashes. My doctors say they've never seen a cancer so aggressive. I'm on the tenth chemo combination so far this year because they either don't work or are too toxic for me to stay on them. Under these circumstances, thinking that my tumors will suddenly disappear and I'll survive to see a cure qualifies as denial, doesn't it?

But I don't think I'm in denial. (Hey, is that denial?) Given the progression of my disease and the current developments in cancer research (fast, but not as fast as my cancer), I'm pretty sure I won't live to see the cure.

Let's say I have five months to live and I divide that time up into the Five Stages of Grief: denial, anger, bargaining, depression, acceptance. What a waste of four months that would be. If I just skip the first four stages and go straight to acceptance, then I can have five good months instead of just one.

Some people would consider acceptance the same as giving up. Those would be people who've never actually faced terminal illness or death. I can accept that I'm going to die of cancer. I would be unreasonable, nay, in denial, not to. Once I accept the reality, I can move on to enjoying the time I have left. If by some miracle I don't die of cancer, that would be an extra bonus. And I will not have lost anything by accepting the possibility and enjoying my remaining time.

So just because I'm not spending my time following Kubler-Ross's Five Stages and getting angry and depressed (Stages 2 and 4) about my situation doesn't mean I'm in denial. It just means I'm being realistic and smart about the time I have left, whether it's five months or five years.

Saturday, November 8, 2008

No More Proselytizers

This is in the comment thread, but I thought it worth repeating here:

A blog reader wrote:

I had a suggestion (after the deluge of religious comments in the previous threads): why not start a post (titled "Save Shin's Soul" or some such) specifically for your many religious readers. Then from now on, any irrelevant religious proselytising can be written there directly or pasted there by you from other threads.

I just feel that the many interesting comments by you and others get swamped - or sidetracked - by the virtual door-knockers. It really is impressive how much grace and patience you manage to respond with, having already stated your beliefs countless times.

My response:

Maybe you're right. Others have also complained about all the comments from Christians trying to convert me.

From now on, I'll try to limit the religious commentary to ideas that are somewhat fresh and interesting.

I will try not to post comments that say the same things about how much Jesus loves me and how my life on this Earth is meaningless if I don't accept God. These commentators might have good intentions, but I guess they don't know my background enough to see that I probably have had more exposure to religion than they have, and that I have well thought-out reasons for rejecting religion. If interested, do a search on my blog for "God" and "religion".

So, no more comments from proselytizers on this site.

Friday, November 7, 2008

Jekyll and Hyde

I've been going through over three hundred comments you readers have sent me since the local TV channel aired a documentary film about me last Tuesday. I'm getting comments with all sorts of praise about what a great mom, wife, friend, human being I am. You're using words such as hero, idol, role model, inspiration. You say I've taught you how to truly appreciate life, your loved ones, yourselves.

The person I see emerging from these comments doesn't feel like me. I feel like I'm wearing a lovely coat that you're all describing with flattering words, but that's only because you have no idea what I'm wearing inside that coat.

Of course, this just goes for those of you who only know me through this blog.

My friends and family who know me personally know that I can be short-tempered, judgemental, arrogant, opinionated, intolerant, sarcastic, sharp-tongued, and downright cruel with my verbal scalpel.

I'm one of those people who thinks it's silly for pet-owners to spend billions of dollars on their cats and dogs instead of on orphans and other needy humans. I don't believe in the death penalty but if anybody hurt my kids, I'd change my mind in a hurry. Hallmark Cards make me want to puke. I always think I'm the smartest person in the room - any room. My favorite line from a book is from Flannery O'Connor: "She looked at nice young men as if she could smell their stupidity." My second favorite line, also from Flannery: "She would of been a good woman, if it had been somebody there to shoot her every minute of her life."

I think people (Americans) who keep guns in the house and have kids should be lined up and shot (not really, but you get the idea). I think the fact that Americans elected George Bush two times in a row shows just how stupid they are (I didn't vote for him). And the only reason why his party didn't win this time around is because most of the people who voted Republican before shot themselves by accident in their own homes.

I'm the person who yells at a homeless man, "Get a job!" But then I buy him food when nobody's looking. I'm the person who yells insults at a customer service employee for being stupid and incompetent, then goes back the next day to apologize for being such a bitch. Classic Jekyll and Hyde.

So you see... I'm not this warm and fuzzy person your comments make me out to be. I have my faults and weaknesses just like everybody else. Except I don't necessarily see them as faults. I think this is what makes me spicy. And as they say... if you can't handle the spice, go hang out in the Hallmark Card section.

Thursday, November 6, 2008

A Father's Strength

I received this comment from a blog reader and it really got to me. I thought it was worth sharing with you.

From "peto":

Today is one Black day - the kind that can only happen in the movies, but...

I'm glad I watched Channel 8; otherwise I wouldn't have met the most special mum in the world.

I'm also glad my 4-year-old daughter actually watched through the whole of your amazing story with me, without her usual complaints for attention.

Tasha: Daddy, who is this lady and what happened to her?

P: Mmh! She is very sick just like 'Po Po Doreen' (my aunt).

Tasha: Why is she so happy?

I was speechless for a while although there are many obvious reasons I could have given her:
Blessed with ...
* Wonderful family and friends.
* Lovely Josie and Toby.
* You just decided to be happy.
* Happy Bald Angel (hope you don't mind)

But I guess this innocent question speaks for what wonderful lessons you are bringing into our lives.

Tasha: Hey! Daddy, you have not answered my question!

I just gave her a huge warm hug and whispered to her that... we must love and live happily just like you.

P.S. This is my first blog comment and I have added it to my Favorites as I plan to learn from every entry after my 4-month-old daughter's heart surgery this Friday.

[From Shin: "Peto", my thoughts, and I'm sure the thoughts and prayers of many who read this blog will be with you and your family this Friday. Please let us know how your daughter is doing.]

Wednesday, November 5, 2008

Apology

I now have over 300 comments on my blog that I need to go through, so please bear with me if you don't see your comment posted yet. I'm reading and posting them in the order they come in, so the most recent ones will be read last. So if you'd like to read your and other readers' comments, go back to earlier posts from this week and you'll see a backlog of them.

All of your comments are important to me, so I'll take my time to make sure I read each one carefully.

Thanks again for your continuing contribution to this blog.

Film, Tests, Wheels

Many of you watched the short documentary film that Channel 8 aired last night. Thanks for taking an interest in me and my story. I thought Valerie, the producer, and her crew treated our family's story with great sensitivity and I'm grateful for their professionalism and hard work. Just half an hour after the show ended, I opened up my laptop to find more than 100 new messages in my Inbox - all having to do with the documentary. Most of these are very kind comments from you about the film and about my blog. Thanks for that. I'll slowly but surely get to your comments. I may not post or respond to each one due to my health, but I will certainly read all of them.

I had more tests yesterday - a chest X-ray to look at the lungs and a liver ultrasound to look at the liver. Not much change from before, so we're continuing on this course of Avastin + Ixempra. If and when my condition starts getting worse, we'll try another drug, possibly Abraxane + a HER2 targetted therapy such as Tykerb, which I've been on before. We've increased my dosage of Dexamethasone (steroid) to see if it will help with my breathing problem. If I continue to have trouble breathing, we'll move on to morphine. If that doesn't do the trick, I'll have the fluid drained from my lungs.

I did indeed get a wheelchair, but alas, not the tank version I showed in the photo in my earlier post. The world is a different place when viewed from a wheelchair. I can't really control where I go; I just get pushed around. Now I know how babies in strollers feel. That's another thing. Every time I see a kid in a stroller now, I want to challenge him to a race. When I see somebody else in a wheelchair, I want to try to go faster. Hey, I've gotta get my kicks somehow. Today, Tony wheeled me to the entrance of a public bathroom (toilet), and then I got up and walked unassisted into the bathroom. That must've looked a bit funny to onlookers. I thought of going to one of those Christian healing sessions so I could let the preacher put his hands on my head and then I'd jump up out of my wheelchair and yell, "Hallelujah! I'm healed! Just kidding!" I wonder if the preacher would find that very funny.

Tuesday, November 4, 2008

New Blog Rules

First, I'd like to thank those of you who are regular readers of this blog for your encouragement and your participation in some interesting discussions we've had here. Your words of support and the knowledge that I've had some positive impact on you have helped sustain me and made me feel like I'm doing something useful with the time I have left.

Unfortunately, due to my health and the increasing number of comments I've been receiving, I'll have to change a few rules for the use of this blog, as follows:

1) I'll read every comment I receive, but I won't be able to publish or respond to all of them. If you find that your comment has not been published, please don't take it personally. Please know that I'm grateful for every word of support and encouragement I receive from you, and although I'd like to thank each one of you with a personal response, it's become rather difficult for me to do that now. I just want you to know that your kind words DO mean a great deal to me, and they'll mean a lot to my children after I'm gone and they read this blog their mother has left behind for them.

2) From now on, your comments will be edited for clarity and brevity. This is to help other readers of the blog understand your ideas more clearly and keep your opinions from getting lost in the rambling that many of us tend to fall into when talking about something emotionally charged (I speak for myself here). I have to confess, also, that I'm an old fogey and am not quite hip to the phone text abbreviations and other modern lingo that some of the younger readers of this blog use in their comments. To help myself and others of my generation, I'll do my best to translate such cryptic lingo, but if I can't understand it, I'm afraid I won't be able to publish it. So please humor me. Besides, remember that I have tumors in my brain - there's that Cancer Card!

Thanks so much for your understanding and for continuing to contribute to this blog. You say my blog is helping you in many ways... you have no idea how much all of you are helping me.

Monday, November 3, 2008

New Wheels?

I'm thinking of getting a new set of wheels. Nothing flash like an Aston Martin or even a Ducati. More like... a wheelchair.

Tony's been suggesting I get a wheelchair so I can get around more easily without coughing and losing my breath. I've been mostly house-bound since my brain tumor-induced seizures in August.

When I do get out of the house once or twice a week, I have to walk at a snail's pace, which turns a 30-minute shopping trip into a half-day affair. If I try to move faster, I lose my breath, start coughing, and that starts a vicious cycle of coughing and breathlessness that leaves me gasping and feeling suffocated. That pretty much takes the enjoyment out of being out and about.

A wheelchair would allow me to zip around the supermarket without the danger of coughing up my lungs. I'd have to get one of those portable oxygen machines to attach to the wheelchair. Of course, then I'd really look like a sick person. Right now, I could still pass for somebody with bad hair sense, but in a wheelchair, I'd definitely look like somebody on her last legs... or wheels.

People who know me might think I'd be the kind of person who'd stubbornly refuse to give in to her physical limitations and resist anything like wheelchairs or oxygen tanks. But as stubborn as I am about my self-sufficiency, I'm also no idiot. I can either stay in bed indefinitely or I can get some wheels and interact with the outside world.

Who knows? I could have some fun with this. Maybe I can put Toby in his stroller and challenge him to a race.



Here's the model I'm considering.


Photo courtesy of Ronnie Ng.














P.S. Reminder: The short documentary film Channel 8 did about me is airing here in Singapore tomorrow, Tuesday, November 4 at 10:30 p.m.