Saturday, February 28, 2009

Josie's Rainbow

I admit that this isn't how I thought it would be. I had imagined trying to be strong for children crying for their mother. I imagined grief that would be debilitating for the whole family. But the reality is that they almost never cry for Shin, we are moving quite normally and I feel almost guilty that we are not struggling more.

When I posted after the first week that the kids were doing well, I really suspected that they were just protected by the initial wave of support form everyone and that things would get harder as we get back to a more normal routine. But now we have been in a routine for a few weeks and i feel more confident that the kids have accepted their loss and confident that things will be ok. I've thought a lot about what made the difference and a think there are several things that have been key. 1) We had our time to prepare, 2) the year-long period of deteriorating prognosis makes are current situation feel quite stable, 3) my mother being here to be a maternal figure for the kids, and 4) the fact that over the past year I had already taken over the daily routine with the kids.

I took a class on organizational behavior in grad school. One of the lessons they taught was about reward and incentive strategies. The evidence is that most companies get this all wrong. Most companies give one bonus at the end of the year and is only generally tied to performance. The better strategy is to take the year end bonus and to break it up and give it more often throughout the year and tie it to specific achievements. Personal satisfaction will be much higher and there will be much stronger incentive to meet performance objectives. On the other hand, bad news is best given all at once. Don't try to break the bad news gradually, bit by bit. Do it all and get it over with.

This framework helps clarify for me part of what I'm feeling. The past year has been the case where little by little we kept getting worse news. There were periods when we were quite hopeful but then hopes were dashed. And all along we knew what the end result would most likely be. Having time to prepare was helpful, but after a year of being on thin ice I think the family feels more steady now. One of the hard parts of cancer is that the steady worsening of news is exactly what my grad course said was the worst way to have to digest bad news. Things feel relatively calm now.

My mother, Carol, was working as a nurse in the US, but retired towards the end of the year to move out her semi-permanently in order to support the kids and me. Toby and Josie have always been very close to her. I think it is a tough transition for my mother, as she doesn't get to be the grandmother who can spoil the kids now. She has to play the role of the disciplinarian parent. She also leaves all her friends behind in the US. But from the kids perspective I think it makes all the difference. Especially for Josie. At night when the kids wake up, Toby always climbs into bed with me. Josie always goes to her nana. One of my mothers friends emailed me and asked why I don't talk more about the role she must had in helping Shin. It so happens that the week I have written most about (Shin's last week) was the week that Carol was on a previously scheduled trip with friends to Egypt. We didn't really think Shin would deteriorate so quickly at the end and I had also told my mother that when I would really need her was after Shin passed away. So I think it was important that she had her time with friends on a great trip even though she had strong misgivings about be away at that time.

I was looking at photos on the computer yesterday. Josie asked to see a picutre of her and Shin. I was able to find one of Shin and Toby first. Josie excitedly call for Toby to come over and look at the picture of Mommy and Toby. Then I found some of Shin with Josie. I have bitter sweet mixed feelings when I see photos of Shin. Toby saw the photos and smiled and said my mommy and gave me a hug. Josie's reaction was pure joy and excitement.

Josie's came up with the idea of making neclases with a photo of Shin. We talked about which photos we would use. Josie said she would use the one with Shin's hands over her heart. I said I would use the one where she is smiling and cuddling Josie. It was a good crafts idea and Josie was proud she came up with it herself.

Josie was over one her best friends' house. They were have a small cake to celebrate Josie's birthday the previous week. Josie said her mother wasn't at her party, "she died too late". Her friends mother said yes, but she is always with you also. They looked outside a little bit later and Josie was really excited to see a beautiful rainbow.

Toby is very clingy with me when he can be, but he is also happy at school and asks to go play at friends houses.

I think they are doing great and I'm increasingly confident that they are going to be just fine.

Tony

Thursday, February 26, 2009

Shin's Unpublished Posts - How To Make Friends

Here is another one. Looks like she started it but then stopped. I still think its intersting to see her train of thought and her self reflection.

Tony



Shin's post 6 Dec 2008...

A blog reader asked me an odd but interesting question. He/she wanted to know how I make and keep friends. I'd never thought about that before.

When we were kids, we moved around and changed schools a lot. From second grade (age eight) to high school graduation (age seventeen), I went to seven different schools. My mother told me that each time we moved, I was the least bothered among my siblings about leaving my friends behind and also the first to make new friends when we got to the new place. I liked hearing that about myself. It tells me I can adapt easily to new situations. I suppose it also suggests I don't form meaningful, long-term relationships, but from all the old letters I've dug up from my past, that doesn't seem to be the case either.

Wednesday, February 25, 2009

The blogsphere's comments on Shin

The blogsphere is wide and diverse. I've received a lot of links to blogs that talked about Shin after her passing. I spent a fair bit of time pondering what it takes to affect so many people of different ages and backgrounds that you have never met. I found it interesting to go through some of the links and I thought I should start to compile some of the ones I've seen into a post.

When the Stars Go Blue
http://whenthestarsgo-blue.blogspot.com/2009/02/another-unit-through-and-done-with.html

Bored Gorgeous
http://boredgorgeous.blogspot.com/2009/02/rest-in-peace-shin.html

Little Gems Unravelled
http://littlegemsinc.blogspot.com/2009/01/goodbye-shin-na.html

Mamayati
http://mamayati.blogspot.com/2009/02/human-with-errs.html

Pheonix’s Wall
http://phoenixlmf.blogspot.com/2009/02/shin-na.html

Simple Complications
http://simplicateme.wordpress.com/2009/01/

Floriticasecret
http://floriticasecret.livejournal.com/3418.html

Back off Cancer
http://backoffcancer.blogspot.com/2009/02/brilliant-life.html

Weifs' whimsical writings
http://weifs.blogspot.com/2009/02/choked-with-emotions.html

Glimpses of my Life
http://musings-of-xian.blogspot.com/2009/02/shin-passed-away.html

Huggies Discussion board in India
https://www.huggies.co.in/Forum/ShowPost.aspx?PostID=1218

Amaryliss
http://amary-llis.blogspot.com/

Mademoiselle
http://liiiting.blogspot.com/2009/02/shins-cancer-blog-i-chanced-upon-this.html

One-2-Zero
http://one-two-zero.blogspot.com/2009/02/my-new-found-respect-shin.html

Taking up the Challenge
http://victorkoo.blogspot.com/2009/02/celebration-of-life-for-shin-na.html

Memories.Moments.Beliefs
http://xi-yuan.blogspot.com/2009/02/blog-to-share.html

Beneath Skin Deep
http://laylachow.wordpress.com/2009/02/01/she-shined-in-her-moment/

Kialee-ilu
http://kailee-ilu.blogspot.com/2009/01/shin-na-cancer-blogger-had-pass-away-in.html

Revived!Refreshed!
http://spiritual-serenity.blogspot.com/2009/01/this-is-post-at-some-sort-of-weird.html

Traces that you Carry
http://disasterriffic.wordpress.com/2009/01/28/endless-story-endless-love/

Glady’s
http://desultory-utterance.blogspot.com/2009/01/345-click-on-this-link-and-unravel-its.html

Monday, February 23, 2009

Lemony Snicket

Shin's favorite character in literature was Odysseus from Homer's "The Iliad", because he was brave, smart and resourceful. Maybe not on quite the same level, I had a strong childhood memory of Violet, Klaus, and Sunny from "A Series of Unfortunate Events" by Lemony Snicket (I even loved the author's pseudonym).

The back cover of the book and the first lines of the story start, "If you are the sort of person that likes happy endings then you should put this book down and buy some other book. Not only does this book not have a happy ending, it doesn't have a very happy beginning, and for that matter very few happy middles." Which of course made me want to ready the book immediately to find out what happens.

The story starts with Violet, Klaus and Sunny becoming orphans when their parents perish when their home burns down. The rest of the story is about them survinging bad guardians and the evil Count Olaf who is after the family fortune. The story appeals to me becuase the kids are so smart, brave and resourceful that they get themselves out of such bad perdicaments. And I like it becuase I always liked suspence better then action and the series is just a long exercise in suspense. I once read someone describe the difference between action and suspence. He said action is "there is a bomb under the table and it blows up", suspense is "there is a bomb under the table...".

So I intoduced these books to Josie, not quite sure how she would take to them. I liked the being able to introduce a story that might make her feel less alone with her loss (here I mean alone as in unusual), and like the theme of persevering through adversity. She loves them and we are now on book 4, "The Miserable Mill". I bought the actual book for the first book but we listened to the audiobooks for the others.

It's been a useful reference in talking to Josie about loss. When I spoke to Josie in Shin's final weeks I read her a list of some things children are confused about. I told the list said that some children wonder if they are considered orphans if they lose a parent. Josie said she knew she was not an orphan, "like Violet, Klaus and Sunny, they lost both their parents" Josie said. Also, in the story at one part it says that "unless you have lost someone very close to you, you can't imagine the sense of loss the children felt". Josie said "I have, I can".

This weekend was Josie's 6th birthday. We went ice skating with friends on her birthday and then over the weekend we went to the Forrest Adventure at Bedok Reservoir. The Forrest Adventure is a rope walkway through the trees. I'd heard about it but we had never gone before. I had assumed that parents would go with the kids, but the kids course is kids only. So Josie said she wanted to do it and as she started, I realized how difficult and scary this was going to be for her (something like 5 to 10 meters high) and thought I've probably made a mistake. But step by step she worked her way through the course. At one point, she wasn't really tall enough to reach the support rope, she felt stuck and scared and was whimpering and called to her grandmother for help. Nana said there isn't anything she can do from down on the ground. So Josie just worked it out on her own and got through the hard part.

I was filled with a strong emotion of pride in her. Smart, brave and resourceful. Shin would have loved to have seen this. Her little Odysseus, my little Violet.

Sunday, February 22, 2009

Its Never Too Early To Prepare

Shin asked me many times in the months leading up to her passing to make sure people with a terminal illness know how important it is to be prepared.

Over two years ago one of Shin's friends sent me through a link to a website that talks about preparing children for losing a parent. http://www.winstonswish.org.uk/page.asp?section=0001000100100015&pagetitle=The+Mummy+Diaries.

Maybe six months prior to that, after a chemo visit one day, I asked Shin if we could go and buy the memory boxes we'd long been talking about preparing for Toby and Josie. She was reluctant. She said it was too early and that she had no plans of dying any time soon. She said she thought it would be like admitting that she was going to die when she had no intention of letting the disease win any battle.

I persisted, as I do, and Shin finally relented (which she rarely did) and we went out and bought the most beautiful memory boxes in the world. That started us on a roll of adding to them. Shin was already writing in journals, but that accelerated. We bought presents for future birthdays and found things that Shin had when she was younger that the kids would cherish. The boxes started filling up.

By the time we reached January 2009 and Shin had decided to stop her chemo, she started talking regularly about how unprepared she felt. She would often say "hell of a deadline Shelly, do you think they'll give me an extension? I have so much to do!"

It was then she realised that us buying those memory boxes all those months, even years ago, made a whole pile of sense. She was relieved that she had so much to leave for the kids, for Tony and me.

She wanted us all to know she realised that getting prepared is not about "giving up". Its not about admitting defeat. Its about making sure that while you are able, you do the very very best you can to make sure you give everything you can. To your kids, your family and your friends.

Even Shin writing her letter to us, her "final words" a year ago brought relief to her in the end because she was so happy we would be able to hear from her and that what she said was articulate and to the point.

Five days after I arrived back from Singapore and the memorial service there were two letters in the post addressed to my kids. She had written them on the 14th Jan 2009, just 13 days before she passed.

I feel we are all very lucky that Shin was prepared. We all have so much more of her to remember. Her essence of life and love for it is so much more present because of everything she has left behind.

Thank you Shin.

Michelle

Friday, February 20, 2009

Hospice vs Home-care

When Shin died, Michelle organized for a doctor that Assisi Hospice recommended to come and certify her death. Michelle said he seemed very confused about what was going on. He was mumbling that it very strange for someone to die at home and very strange for someone donate their body to research. In fact, in the days before Shin passed away, Michelle was checking on the various procedures and the police had told her that in the case of a home death that they would have to send to body to forensics for an autopsy - which turned out to be incorrect. We were surprised at how this seemed so unusual here in Singapore.

We were not sure how it would go in the end and Michelle and my mother had already visited several hospices to see which would be the nicest for Shin. Michelle already wrote about how she was really impressed with Assisi. Shin first thoughts were that she didn't want the kids to see her struggling in pain and dying. She expected that going to the hospice would be the right thing.

As it turned out I think we are all thankful that we were able to care for her at home. I don't think many people would be in position to do so, but as it turned out we were. Shin needed 24 hour around the clock care in her last couple of weeks. It just so happened that my employer was thoughtful enough to give me some time, Michelle had not started her program to get her degree for teaching maths yet and Alicia was able to take a couple of weeks off her job. Together, I felt Shin got the most loving care she could have possibly gotten.

Its wasn't easy. It was flat out tiring and we were all sleep deprived. Shin had good moments where she felt good and cheerful. But a lot of the time she was uncomfortable and frustrated that she couldn't communicate well. Due to her weak breathing, she would usually write what she needed to say. I think anyone who is contemplating home care, should anticipate a patient who is increasingly uncomfortable, frustrated and demanding a lot of the time. There were nights when Shin was finally sleeping soundly that Michelle, Alicia and I all had that feeling of relief that we experienced as parents when our newborns were finally asleep.

Being able to be close to family was also important. I have already written about the night when Shin was sleeping peacefully that the children were able to say goodbye to her. Also, Shin's parents, brother and sister came from Korea and the US to see Shin while she was still alert. When she had periods of strength we were all right there to take advantage of those times and in them I think she had some nice moments with her family. I'm not sure you we would be able to have such nice moments if she was in a hospice.

The Assisi doctors and nurses made frequent visits as we needed them. Every few days at first, and up to every day in the last week. We were able to get all the prescriptions for the drugs we needed. I would make frequent trips to the hospital pharmacy to get bottle after bottle of morphine (which is surprisingly inexpensive) and fentynal patches (which are expensive). The hospital pharmacists would stare at me wide-eyed as I would ask for all this morphine. One day Dennis, Alicia's husband went to pick up some more morphine for me. He was up all night working on the memorial slideshow, hadn't shaved and looked rather like a drug addict. He said the pharmacy gave him the third degree, but eventually gave him the drugs.

I don't know what we would have done if Shin had lasted longer. I've heard of some cases where a patient can linger for weeks. At some point Alicia and I would have had to go back to work, Michelle might have had to get back to Australia. We never really ruled out having to go to the hospice, but I think we all felt more comfortable with the way it worked out. I imagine that not many families would have the luxury of time to provide around the clock care for loved one and the hospice is a nice and critical option. But I wouldn't rule out home care even if it is rarely done here in Singapore. I don't think it is that rare in countries like the US and Australia. And I hear of many cases where families rush a dying cancer patient to the hospital to die. I don't really see what the point. There is nothing the hospital can really do, and the racing to and checking into a hospital is not the way for a patient to spend their last days.

And of course it helps that Shin was just one of those people that it was worth it to get every last moment you can to be with her.

Tony

Thursday, February 19, 2009

Shin's Unpublished Posts - Cancer Friend Humor

Here is another unpublished post. I miss her laugh. I think she didn't publish this link because she thought it might offend her friends. But she thought it was very funny.

Tony


Shin's post (29 Oct 2008).....

Here's an article entitled, "Man With Friend With Cancer 'Going Through A Rough Time'", from The Onion, a satirical news Web site.

Wednesday, February 18, 2009

Memorial - Shin's Last Words

Shin wrote a letter to be read at her memorial service and gave it to Michelle to read. Michelle has already posted the letter in a previous blog post, but below is the link to the video of her reading of Shin's letter.

As always, Shin gets the last word.

http://www.vimeo.com/3220558

Tony

Tuesday, February 17, 2009

Managing Pain

I just saw a show on TV where someone dies of cancer. It was dramatic and painful and horrible. It wasn't at all like what Shin went through.

Shin had a fairly high tolerance for pain. If there were children around, she could not only stomach a lot of pain but put on that beaming smile that would light up the room. But she was also quite practical about pain management. When it came to childbirth she readily asked for an epidural and didn't really understand why one wouldn't. And when it came to cancer pain management she was quick to accept pain releif.

Over the past year, to control pain and coughing/breathing problems Shin was taking codeine and panadol. Morphine was the other option, but it felt like a big move, a terminal move, so she preferred to stay on codeine, which was proving fairly effective. When her abdominal pains increased after Christmas she started taking morphine but she felt horrible and nauseated so she went back to the codeine. A side effect of morphine is nausea, so Shin became reluctant to try morphine again. Michelle and I thought it was more likely that the gall bladder was responsible for the nausea and Michelle was able to convince Shin to try the morphine again. It worked well the second time round.

She started out with a liquid morphine form that she would drink every 4 to 6 hours. She initially took about 25mg per day. We then put on a fentanyl patch which essentially is a band aid like sticker that we put on her stomach/chest/leg or arm. It would last 3 days and give her a steady does equivelent to 25 mg per day. Then when she felt pain or breathing problems we would give her morphine. This was the so called "breakthrough" morphine, for when the pain would breakthrough the patch dosage. When we found we were giving consistent "breakthough" doses we added another patch. And when I say "we" I mean the palliative care team, Michelle and me.

In the final week, the patch was not working so well. Shin's heart beat was racing but her overall pulse was not that strong and her blood pressure was so low the doctors could not get a reading. The circulation needed for the patch to work well was just not strong enough. We decided to switch to a subcutaneous injection form of morphine that was administered through an injection driver. An injection driver was a small devise that would steadily squeeze the syringe at a steady pace thoughout the day . We put 125mg of morphine in the syringe and it would last a day for Shin. When she had breakthrough pain, we could press a button that would give her an extra dose. The needle went under her skin in her stomach and was taped there with a butterfly clip and would stay there all day.

By the final two/three days Shin was sleeping 97% of the time and when she did wake, she seemed uncomfortable so we would boost the morphine and she would sleep again. Sometimes she looked uncomfortable in her sleep, sometimes her breathing was racing and sometimes she had a strained look on her face. When we would see this would boost the morphine and she would calm. By the final day we had increased her daily dose to 150mg per day. I saw her go though a period of racing breathing in her sleep that she would associate with the feeling of suffocation when she was awake. I had to boost the morphine several times in a row with only 10/15 minute breaks in between. Eventually her breathing slowed and then later stopped. I think it is likely that the morphine was responsible for slowing her breathing until it stopped.

I was holding her hand as her breathing stopped. I was telling her everything was going to be ok. She's done a great job, and she can trust me now. The kids are going to be just fine. Go to sleep and rest peacefully.

Shin had decided that her first priority was that she didn't want to the kids to see a pain savaged cancer patient. Her second priority was to get as much quality time with the kids as possible. But when it became clear she could not really spend good time with the kids without the emotion of it triggering a coughing attack, Shin said she was ready if the medication caused permanent sedation. In fact Shin said that she would prefer to end it already (about 4 days before she passed away), and I would have been ready to help her with that if needed. But in the end I think we all felt comfortable with the process. We would not let Shin be in any pain, and if she was we would boost the morphine if to the point where there were risks. A year ago, Shin and I had talked about what we would do if Shin was in an unbearable state. She wanted to have options to end it if it got ugly. We talked about having sleeping pills on hand just in case. But I think if we knew a year ago how the process would be managed, we would have been more comfortable.

I think Shin's overall pain management was done as well as can be. I think she was fortunate not to linger in a sleeping state for weeks. I read in one of the comments that it is probably better to have cancer in a critical organ rather than a prolonged battle with pain in less critical areas. She was at peace with death and didn't need to prolong the final stages. Maybe not everyone can die as peacefully as Shin did, but I'm encouraged that the palliative care help out there can manage things better than I had realized as little as a few months ago.

Tony

Monday, February 16, 2009

Shin's Unpublished Posts - Why Remember?

Shin has a bunch of unpublished draft posts in her blog account. She probably didn't think they were interesting enough to publish or held back for other reasons, but I find them very interesting now. I thought I would publish some of them.

This post is about what she wanted to rememered for. There was a cancer blog by Leroy Sievers that was an inspiration to Shin. Leroy once asked what his readers wanted to live for. Shin wrote in that her kids were 1 and 3 (at that time) and that she wanted more years so that her kids could remember her. Not for any particular accomplishement but just to remember her being her. Being a famous journast Leroy appeared on TV quite often and had a documentary done about his battle with cancer. I noticed in most interviews he would quote Shin's comment about the mother that wanted her kids to remember her for being her. Shin had a talent for having her words stand out. There were hundreds of responses to Leroy's question, but for some reason it was Shin's that he continued to quote.


Shin's post (10 Dec 2008).......

People want to leave a mark on this world, leave behind a legacy, be immortalized in history books. That's never seemed important to me. After all, why would I care what people remember or think or say about me after I'd dead and gone? I'll be gone, after all.

The only reason leaving behind any kind of legacy is important to me is for my kids. If they can't have a living mother, at least they can have the memories of a mother who loved them to pieces. That isn't about me being encapsulated in their hearts and minds so that my existence on Earth will not have been for naught; it's about giving the kids something, anything to replace the mother who had to leave them too early.

Sunday, February 15, 2009

The Race To The Finish

I just downloaded a memory card from my camera onto my computer with photos from the past month. It's sureal to see photos of Shin alive and looking good. The final stages did not feel very fast as they were happening, but I sit here today and look at a photo of her looking so alive and feel stunned how quickly it all happened.

Shin has already given quite specific details of her condition, but I thought I would start with a quick recap of what medicallly was going wrong. By the end, so many different things were breaking down at once and it seemed like a race to which problem would get Shin first.

The first problem arose during the Christmas holidays. As she has written, both her gall bladder and liver where giving her problems. Her gall bladder had a bacterial infection and would normaly have been removed via simple surgery, but she was not strong enough for the operation. Her liver was 20% swollen and filled with numerous tumors that made up about half the mass of her liver. The tumors were growing fast. With her liver so weak she thought she would not be able to survive more chemo so we stopped chemo treatments on the 10th of January. She only lived for 17 more days.

The next problem that became critical was her lungs. She started to really struggle with her breathing and she was on the oxygen machine for most of the day. The doctors said the fluid around her lungs was reducing her breathing capacity. The main option was to drain the fluid in the lining of the lungs, which led to the 16 Jan post where she described her worst day so far, when the draining triggered a panic breathing episode. The draining did not have the immediate effect we had hoped. But we continued to drain about 500ml per day which seemed to reduce her coughing but didn't do much to help her breathing. But the draining process itself was lowering her blood pressure and making her feel dizzy. In fact the doctors were not able to get a diastolic reading for Shin. It became clear we would not have the option of removing too much fluid and thus she would face increasing pressure on her lungs. At this stage it seemed like a race between her lungs and her liver as to which would get her first.

A few days after the drain was put in, Shin stopped eating. It was painful to eat. It was a big effort, it made her miserable and she had no desire to eat. In fact, she had not had an appetite for weeks but had been eating because she knew she needed to to take her medication. She was aware her time was limited and didn't feel the need to prolong things by doing something that made her uncomfortable. She also wanted to do things her way and take control of her situation.

About the same time, her breathing troubles started to increase. The doctors found that her heart was racing to make up for the lack of oxygen and for the low blood pressure. So the condition of her heart and her overall nutrition entered the race to be the final straw for Shin.

Given all this, Shin's body was strong. It had always been strong. She had rarely been sick. She had amazingly few side effects to all her cancer treatments throughout the three years and had been resilient not just on an emotional level but on a physical level too.

The good news was that Shin did not have to suffer, except for a few episodes where she suffered breathing panic attacks that made her feel like she was suffocating. But essentially we were able to control her discomfort in that last week with three drugs. 1) morphine - for pain relief and to help make breathing easier, 2) Midazolam - which helped with anxiety and sleeping and 3) Haloperidal - which helped with the hallucinations Shin was experiencing as a result of both the disease and the cocktail of drugs she was on. Her hallucinations were often very simple and sometimes funny. She often thought someone was lying on her lap, or that a kid was in her room.

We increased the morphine dose quite quickly to keep her comfortable. In the last several days she was on 125mg per day. I looked up what a lethal dose was considered to be on the internet and it said 125mg per day. Shin's body was getting used to the higher doses but she was also half the size of a normal person. So the final element that joined the race to get to Shin was her morphine levels and the rate at which it was increasing. In order to keep her comfortable the morphine could slow down and eventually stop her breathing.

So in the end it was a race between liver, lungs, heart, nutrition, and morphine. And although it seemed to happen in slow motion, it was only 11 days from the draining of her lungs to her death.

This post was meant to be a medical recap of what Shin was facing. I have thoughts on the pain relief strategies that we used, what it was like to be able to care for her at home, and what happened in the final days. I'l follow up in the next few days.

Saturday, February 14, 2009

The Final Stage of Cancer

I've been putting off writing about Shin's final weeks, but I do think it's important to share it.

I recall that as Shin and I learned that her situation was terminal, we were very uncertain about what the final stages would be like. The mystery and uncertainty were frightening. Blogs that we followed where a cancer patient died, usually ended without it being clear how it happened. Shin had a friend who died of cancer in the past year, and when Shin asked husband how it happened, all he could say was "it's too horrible to talk about". We have another friend who's father past away and had chosen to remain conscious for as long as possible instead of increasing morphine, which led to final stages that were very difficult for our friend. In the final weeks I think Shin was at peace with the fact she was going to die soon but I think we were all afraid about how it was going to happen.

I think if we knew then what we know now, we would have been less frieghtened. And although if feels rather personal writing about Shin's last days, and she didn't want to be remembered as a sick person on her deathbed, I think Shin would have wanted me to share her experience. So I'll collect my thoughts over the next few days and update on the final stages.

Here is one note of general encouragement. One night, the palliative care doctor and nurse stayed for dinner and then stayed to talk more to Shin's parents and answer their questions (this would be 9pm and our palliative care doctor had a toddler at home). We said that Shin seems quite at peace to us, and asked is this unusual? I imagined most people really struggling with their death. The doctor said no, that the vast majority of her patients are at peace when they die. We also asked if religion made a big difference. She said no that She herself was Christian, but in her experience most people find peace with religion or without.

Tony

Friday, February 13, 2009

Memorial - Kindness poem read by Ella, Ciara, and Josie

Ella (Michelle's daughter) wrote a poem called kindness. Shin was so impressed and raved and raved about it. We decided Ella, Ciara and Josie could read it at the memorial service. Shin would have been proud of them.


video

Thursday, February 12, 2009

Shin's Palliative Care Team- Thank You

I would like to take a moment here to explain to you the enormous help provided to us by the Assisi Palliative Home Care doctors and nurses. We would NOT have been able to cope in those last four weeks without them. I am writing about them for two reasons. Firstly to say thank you to them and to show publicly our huge appreciation for all they did for us, and secondly to tell those of you who may one day need this kind of help, just how valuable it is. I honestly never thought we would need this support. I wish someone had told me.

Carol (Tony's mum) and I spent days phoning and visiting hospices and home care teams in Singapore to work out which would be best for Shin. We chose Assisi partly because of its quality hospice facilities and flexible entry rules. But mostly because of the passion and good feeling we felt while we were there. The lady who was the face of the organisation was the primary reason for our final decision because of the warmth and comfort she gave us in representing Assisi.

From the first time a doctor and nurse arrived at our home to the very last visit we had, we received nothing but love, compassion, understanding, professionalism and quality advice. Their primary objective was to make sure Shin was comfortable, no matter what.

And believe it or not, this service is FREE to all Singaporeans.

We used a combination of morphine, midazolam and haloperidal to help reduce/remove Shin's pain and breathing problems and they constantly adjusted the levels of each to get them just right. They took the time to explain to us what to expect at each step. They treated Shin with respect. They treated us with respect.

Tony and I will write more about what we, and Shin experienced through the last couple of weeks. I hope that all of this is helping or will help others.

Thank you to everyone at the Memorial Service who donated so generously to Assisi, we raised just short of $5,000 which has been passed to Assisi in honor of Shin.

Thank you Assisi, for everything you did for Shin. She is a special person and she deserved such professionalism and love.

Michelle.

Tuesday, February 10, 2009

More comments from Children

I've remembered a few more interesting comments, I thought I would share - mostly just as an insight to how kids think about loss.

I mentioned that Toby had already decided that Jin (Shin's sister) should be my new bedmate, but I had forgotten about the more direct things they were saying to Jin. On the same day that Shin died, Josie asked Jin if she could be her mommy now. Also Toby hugged Jin and said "my mommy" several times. Jin looks a lot like Shin and has a similar enthusiastic loving spirit that I think reminds the kids of Shin.

Before Shin passed away but after I had explained that mommy might die soon, Toby had an interesting conversation with our helper, Elisa. Most people assume that at 3 Toby is to young to understand what's going on, but I've been amazed at how quickly and clearly he thinks through the implications of what is going on, what it implies for him and what he needs. This is a great example. When Elisa cam back from the Philippines after Christmas holidays she brought back some good mangos. Toby loved them and asked Elisa to go back and get some more. After I told Toby that mommy might die soon, Toby told Elisa that he doesn't want any more mangos. He said he didn't want Elisa to go back to the Philippines. And that he doesn't want to get a new "auntie". A neighbor's "auntie" just went back to the Philippines and their family got a new helper and Toby seemed aware of the possibility. He asked Elisa if she was going back to the Philippines, because he didn't want a new auntie. Elisa asked why, did your father say something? But she was quick to figure it out that it was Toby just looking stabilize the people around him.

Josie's music teacher, who is a longtime friend called to say she is looking out for Josie and told Josie that if she is feeling sad that she can come and visit her. Seems Josie took her up on it right away and came during the next recess break with her friend Poppy, saying she was sad. I'd bet she just likes the special attention, and it is comforting to me to know that it is there. Her music teacher mentioned that the class was talking about the coming parent/teacher/student meetings. Josie said to the class her mother is not coming. A fellow student said, yeah because she was dead. Her music teacher said yes, but she will still be listening, and was a little taken aback by the bluntness. I mentioned to her music teacher that the bluntness and openness are probably good, and much better than secrecy and mystery. But there is a risk that I have read about. Kids can be mean and can pick on one's greatest sensitivity. It is not uncommon for a child suffering loss to stand out as being different due to the loss and then picked on because of it. So far I think the kids (and myself) have received only kind and loving support (to an unbelievable degree really). I think the school fosters great values and support for others. But I am bracing myself for the the probable day that our existing hurt is met with meanness.

Thanks to everyone writing in comments. I have not had time to respond to them, but I read them all. Great suggestions of helping the kids, touching stories of similar circumstances, and I really appreciate the kindness and support.

Tony

Monday, February 9, 2009

Children and Loss - Questions

After Shin passed away I told Josie and Toby and explained it to their friends as well. Their reactions were mostly silent and watching what other adults were doing. They didn't really cry. Toby was both a little clingy but also distracted and wanted to get back to playing with his friends. Josie was worried that I was sad and didn't want to dwell on it.

I've talked to the kids regularly about Shin and how they are feeling. Mostly I try to analyze the various comments they make from time to time. Here is a sample of some of the things they will say.

On the same day Shin died, Josie asked if I would marry again. She seemed to think it was a good idea. She didn't say so, but I think she was seeking to be a complete family again.

The next morning, Toby came into my room and said he wanted Aunt Jin to sleep in my bed where Shin slept. I told that's an interesting idea. But likewise, I see it as his way of trying to help fix our family.

I mentioned in a previous post that I had talked to Josie about burials and cremation and how she didn't like the idea of cremation. But after Shin died, I explained to her and her friend Ciara who was with her at the time that Shin had donated her body to research. I said that mommy hoped that with extra research, one day they might find a cure for cancer. I said they would take the body and then in six months cremate the body and give us back the ashes. I said it was a smart thing for her to do, and explained that the doctor we spoke to said it is rarely done in Singapore. Ciara asked why don't more people do it, I said I wasn't sure but that some people might not be comfortable with it. Josie said it doesn't matter what happens to your body after your dead and that when she dies she wants to donate her body to research as well.

Josie asked what we will do with the ashes. I said mommy suggested we spread the ashes in the ocean and that way when you want to go talk to her, you can go to the ocean and feel like she is there. Josie said she didn't want to do that and that she wanted to keep the ashes. I said we won't do anything until we all agree.

Josie has used crying for mommy a few times when she is being naughty. The other night she was delaying brushing her teeth at bed time. I was getting cross with her and she was whining and crying. She has behaved like this on various occasions in the past, but this time she cried she wants mommy. I think she is being clever and manipulative. Its a tricky one. My approach has been to not ease up on discipline. But its hard not just to break down and give her hugs. I try to give her extra comfort once she is in bed.

I saw Josie had written in an old writing practice book. Several pages had Shin written repeatedly. The next pages had Mommy written down the columns. This was followed by pages of "loves", then several pages of "Josie". All the words had a line crossed through them. I'm not sure why. It seems she didn't want anyone to see it. I told she did a good job and that Mommy would have liked it. I asked why she had crossed it out, and she said she was drawing the cross lines like in the book.

Josie was writing a list of people she wanted to invite to her birthday party. She listed a group of girls that she is friends with and then listed Toby, Nana, Daddy, Mommy, and Josie. Probably not a big deal, but I wasn't sure if it was a consious thing she did or if it was just a simple mistake.

There are various times the kids will make quick comments. Toby in the car the other day sudden blurted "I miss mommy". I was walking with Josie by a clothes store and she saw a mannequin in a sun dress and Josie said that looks like mommy.

Overall, I'm amazed at how well Josie and Toby are doing. I had imagined it being much harder. I suspect that their are difficult times to come, but the fact that they have dealt so well this far makes it much easier for me.

Sunday, February 8, 2009

Children and Loss - An open talk with children

Two nights before Shin passed away I sat down with Josie and Toby along with Michelle's family and Alicia's family (they both have two daughters aged between 6 to 8). We talked about how the doctor's thought Shin only had a day or two left and we talked about saying goodbye.

It was a difficult conversation from many angels. Some of the things I was aware of was the fact that I had been talking to Josie and Toby, but I always did it when we were on our own. I was worried that it was feeling like a secret topic. I didn't want Josie and Toby to feel alone with their loss. From Alicia's and Michelle's perspective they each had to deal with explaining death to their kids. We agreed we would all sit down together to talk about it.

I told all six kids that we had increased the medication to a level where Shin was mostly sleeping all the time now. She was comfortable and peaceful but mostly sleeping. I explained that it is not the same as when we go to bed at night and go to sleep. Shin's sleep was a result of the medication (Shin had warned to make sure the kids don't associate sleeping and death and thus create a phobia about sleeping). I said that it was time to say goodbye to Shin. I was also mindful that I had not cried in front of the kids and I had not seen them cry. I knew this would be a difficult talk to get through without crying, but I did not resist it that much. Josie asked if I was crying happy tears, and I said no, they were sad tears becuase I would miss Shin. She did not cry herself but she gave me hugs.

I told the kids that they could go and see Shin sleeping if they want to say goodbye to her directly or they can say their goodbyes in quietly on their own if they wanted. This is a fairly delicate issue from Shin's perspective. She didn't want a lot of deathbed visitors, and just didn't want people's last thought of her to be frail and dying - especially the kids. But I was convinced that she looked peaceful and that it was important to say goodbye. So I took Josie and Toby and they hugged and kissed Shin and said goodbye and they loved her.

Alicia's kids started the idea of of writing love/farewell cards to Shin. Michelle's kids were writing cards as well and Josie and Toby joined in. Then the kids went in to put their cards on Shin's bed and they all said goodbye to Shin.

This was also Alicia's birthday. So after we had gone through the heavy emotion of saying goodbye, we all gathered around and sang happy birthday to Alicia and had some champagne.

I was quite uncertain about how to handle all of this and whether this was a good approach or not. While there are lots of guide books about "what to expect when your expecting" the books are much fewer about what to do in these situations. But after it all, Michelle, Alicia, Dennis, Brendan and I all felt that this was a really good and therapeutic thing we had done. I was comforted that Josie and Toby knew it was ok to cry, and that they don't have to be alone with it. Their best friends knew just as much as they did and it was all out in the open. I think Michelle and Alicia also felt it was an important lesson for their kids. And it was nice they we had the opportunity to show that despite feeling sad we can move on and celebrate and have some cake for Alicia.

Memorial - Eulogy by Alicia

The link below is for the video of the Eulogy that Alicia read at Shin's memorial service. The video misses actually misses the first paragraph of Alicia's comments. See the written text in the post from a few days ago for the her full comments.

http://www.vimeo.com/3119315


Tony

Saturday, February 7, 2009

Memorial - Michelle's Letter to Shin

Attached is a link to the video of Michelle's letter to Shin. Thanks again Lynn & James, its beautiful and I treasure what you've done (http://lianain.blogspot.com/).

Tony

http://www.vimeo.com/3091574

Children and Loss

I've found that a lot of the advice from books on how to help children deal with loss is very age specific. Shin's blog has been about sharing, and thus I did want to share what our approach has been in helping the children, but ultimately I imagine any insights are only helpful to other families who happen to have similarly aged children as Josie (almost 6), and Toby (3).

After reading various books I think some of the key things we took to heart were 1) children hold a surprisingly strong grudge over "white lies" told to them, 2) its not their fault, its not their fault, its not their fault - its surprising how kids can take blame on themselves, 3) at young ages, its really all about them - who will take care of them, how will things change ...etc, 4) they won't really know how to feel and act and will take their cues from us.

Other things which we tried to prepare for were 1) overcoming being alone with the loss, 2) avoiding being picked on for being different, 3) answering other questions - are they orphans?, what happens if something happens to me?, will i re-marry?, what happens to the body? ...4) discipline has to be kept up as kids are likely to feel more insecure if patterns are changed.

So from the beginning, we been pretty straight with the kids about Shin's cancer. When Josie was only 2, Shin explained she had cancer, what it was, that it was not something you can "catch", that there are treatments that can make her better but that it may make her hair fall out and may make her tired and feel sick, and importantly that she could die. As it turned out Shin had surprisingly few side effects to the chemo, but she did loose her hair. Shin didn't like the feel of a wig and Shin was always the "accept (or not) me as I am" type of person. We noticed that hair issue seemed fairly big for Josie who was then about 3. Other kids in Josie's kindergarden class would stop and stare at Shin. Shin would simply explain that she is taking a special type of medicine that makes her hair fall out (needing to emphasize its a very special type of medicine - no other medicine will do that). Shin was outside Josie's class once waiting to pick her up while the kids were working on an art project. Shin heard Josie stand up and announce to the class the her mommy does not have any hair. It was not really a big deal, but it did signal that it was something she was dwelling on and seemed to be worried about others reactions to it.

As Shin's condition got worse with the recurrence and the spread to lungs, liver, and brain, we debated how much to tell the children. We decided that we didn't need to change what we had already been saying. That is that Shin still has cancer, the doctors have not been able to make it go away yet and Shin still needs to take medicine. Its true that at that stage normal life expectancy could be as little as 4-5 months. But we thought even that is too long for the kids to deal with. As it turned out the extra year that Shin had was already half of Toby's life. So we saved conversations that Shin was probably not likely to make it until Shin started to really weaken and we thought she would not have much longer left. As it turned out she had about 3 weeks left when we started giving the kids more information.

We planned on talking to them together, but it turned out hard to find a good time when Shin was able to talk and the kids were calm enough to listen. So instead we agreed I would talk to them when I had a chance. I explained that the doctors do not think they are going to be able to cure Mommy's cancer and that she could die and it could be soon. I explained that I would take care of them, Elisa our helper would be here to help take care of them and that their Grandmother (my mother) would move here more permantly to help take care of them. Josie asked what if something happens to me. I gave them the long list of people who love them and would want to take care of them. Toby asked what if all the grownups die, and I said that wont happen or the kids won't have anybody to boss them around and they could eat chocolate and watch movies all day - which made them quite excited. I said the I've read on the interenet (which to yound kids is the all knowing library), that many children who lose their parent think is their fault. I asked who's fault do they think it is? Josie said it was the cancer's fault. I told her she is very smart, and that we all did everything we could to make Shin better and it was no one's fault.

We talked about when some people die and they are buried and others are cremated. Josie didn't like the sound of cremation and said she didn't want that. We talked about how the body doesn't matter after we die. I said mommy's soul will be in your heart and in heaven. We talked about Star Wars which we had recently scene and talked about how when Ben Kenobe and Yoda died, they still looked after Luke Skywalker. Not being religious, makes things more difficult at this stage. I'd be happy to tell them anything that would make it easier for them, but also aware that I don't want to make my words seem insincere if one day I explain to the kids that I myself am not religious.

Josie said she hoped mommy won't "die soon" (I noticed she used my words). I tried hard to keep my composure and did not cry as I explained this to the kids. I don't think I was cold and unemotional but tried hard to keep strong. As a result neither Toby or Josie cried when I explained this all to them. Partly, they may have already known it, seeing Shin get weaker over time. Also maybe the withdrawal process is not so severe since Shin had been increasingly less able to do things with the kids, and thus they were already used to me doing everything for and with them.

The other thing I did after I spoke to the kids was explain to their schools the situation and what I had explained to the kids and asked them to keep an eye on Josie and Toby and let me know if they were behaving differently. As it turned out they seemed to do just fine. Josie's teacher mentioned that there was a school outing to Chinatown and about 10 of the other kid's mothers came along and that Josie was likely thinking of her mother not being able to come. Josie seemed to cry rather quickly when she got in an argument with a friend, but bounced back quickly and got over it. She sat on the bus next to her teacher and they talked about the movie the "Polar Express".

I continued to try to talk to the kids every day about their mother. I kept trying to make sure they felt secure that they will be well taken care of. Josie got tired of hearing about how they will be taken care of. So we talked about what we would miss most. I'm repeating my Eulogy, but Josie said her love, I said her smile and Toby said all of her. Josie said its ok because she will always find her love in her heart and I could find her smile in my heart. and Toby chimed in that he will find all of her in her heart.

This post is long enough already and I'm emotionally tired going through it again. I still want to update on how we all said goodbye and how we have been doing since, but I'l have to do that in the next post.

Tony

Thursday, February 5, 2009

Memorial Service - Eulogy by Tony (video)

Attached, is the video of Tony's Eulogy. We'll post the other segments when they are finished being edited.

Tony

http://www.vimeo.com/3077874

Memorial Service - poem by Ella, Ciara & Josie

The overall service consisted of 1) the paddle salute and song from her dragon boat team, 2) The Eulogy from Tony, 3) Eulogy by Alicia, 3) A poem read by Ella Brady, Ciara Brady and Josie Raza, 4) a word for thanks from Ms Kwek, found of the Breast Cancer Foundation in Singapore, 5) Michelle reading her final letter to Shin and reading Shin's letter to everyone, 6) the photo slideshow, 7) the balloon release.

Below is the poem read by Ella, Ciara and Josie:

KINDNESS by Ella Brady

Kindness is something about friends.

You need to be kind to make friends.
Friends are about kindness.

For an example, 
if your friend falls over you can help them up.
Or if a person that you know falls over, 
you could help them up.

If somebody couldn't be near something because they were hurt, 
you could stay with them, even if you didn't want to. 
And that would be kind to them.

Kindness is love. 

So if you love someone you would be kind to them.

You can even be kind to people that you don't know.

For an example, if you were walking down the street one day 
and you saw somebody that you didn't know, 
you can still be kind to them.

You can help them carry a heavy bag 
or hold the door or gate open for them. 
Or you could just say hello 
and that will still make a big smile on their face.

Kindness is being kind to everybody.

I love being kind.

Wednesday, February 4, 2009

Memorial Service - Shin's last word

The overall service consisted of 1) the paddle salute and song from her dragon boat team, 2) The Eulogy from Tony, 3) Eulogy by Alicia, 3) A poem read by Ella Brady, Ciara Brady and Josie Raza, 4) a word for thanks from Ms Kwek, found of the Breast Cancer Foundation in Singapore, 5) Michelle reading her final letter to Shin and reading Shin's letter to everyone, 6) the photo slideshow, 7) the balloon release.

Below is the letter from Shin to everyone:

My friend Michelle asked me to write a letter that she can read aloud to friends and family at my memorial service. She’s full of good ideas, my Shelly.

As you know, I like telling people what I’m thinking and feeling, and I have so many things to say to all of you individually. I wanted to write each of you a letter. I especially wanted to write letters to your children telling them things about their mom or dad that they may never hear from anyone else. I want your children to know what impact you’ve had on my life and what part you played in restoring my faith in humanity.

But I’ve run out of time, so I’ll have to say as much as I can to all of you in this letter.

I know it’s sad that I’m gone. I’m sad about the things I won’t be able to do for Josie and Toby as they grow up. I’m sad about the tough days ahead for Tony. What’s he going to do when Toby throws a tantrum, demanding to see me? How will he feel when Josie cries for me in the middle of the night after waking from a bad dream?

I’m sad about the pain my illness and death have caused my friends and family. Losing people you care about and the thought of never, ever seeing them again, or hugging them, or hearing them laugh is heart-breaking. Trust me, I know. You’re only losing ONE of me. I’m losing ALL of you.

But here’s something even more sad – what if we had never met, never gotten to know each other, never laughed together or cried together or learned from each other? Sure, we’d have saved ourselves some heartache, but we’d have lost a great deal more than that.

I’ve learned so much about you all these past few years – your selflessness, compassion, strength of heart, generosity, vulnerability, innocence, resourcefulness, humility, forgiveness, loyalty, faith, and so much more. Each of you, in your own way, has shown me something about human nature and the human spirit that fifty more years of life might not have shown me.

And many of you have told me that I’ve taught you a thing or two. You’ve said I’ve been an inspiration, a role model, a source of strength, even a gadfly. Just hearing these great compliments from you made me want to live up to them and deserve them. That’s what kept me going during some of my darkest moments. You had put so much faith in me, I just couldn’t let you down. You saved me.

It’s a shame that it took terminal illness and death to teach us all these lessons, but I think my death was worth it. I know that sounds terrible, but I wouldn’t trade in these past two years for a hundred more years of living an ordinary life, not knowing what amazing creatures we humans are capable of being.

That sounds selfish. I have two young children who will grow up without their mother. But the tears I can’t wipe away, the birthday parties I can’t throw for them, the motherly advice I can’t give them are nothing compared to the legacy you’ve all helped me to leave behind for them.

I know that Josie and Toby will grow up surrounded by my friends and family who will be surrogate mothers to them and provide them with the love and security that I won’t be around to give them. I’m not too worried. I feel confident that I’m leaving them in good hands and they’ll grow up to be happy, kind, responsible people.

But as they grow up, they’ll hear stories about the last few years of their mother’s life. The life lessons they’ll learn from what all of you here today have done for their mother, will be lessons they might never have learned otherwise. I think that’s worth any pain we may have suffered. Please think of that when you start to feel sad about my death.

I have one last request to make of you: Don’t forget what we’ve learned from each other. I think we’ve all surprised ourselves these past few years with inner strength and compassion that we didn’t even know we were capable of.

Time and the business of everyday living can make us forget a lot of important things – we let the mundane tasks of daily life get in the way of even thinking about the people we love, especially those who are gone or live far away, but sadly, even those who live in the same house with us.

Josie has told me she’s afraid that she’ll forget me someday – forget what I looked like, forget to think about me, and someday stop loving me. I have the same response for you that I had for her:

You may forget me someday. That’s just normal brain function. But you should never feel bad about it, because as long as you remember the things that were important to me, you won’t ever really forget me.

Thank you for teaching me so much, caring about me so much, and showing me and my family that I had a life worth living. Thank you for showing me what a lifetime of religion couldn’t – that there is a God, God is within each of us.

Love, Shin.

Memorial Service - letter from Michelle

The overall service consisted of 1) the paddle salute and song from her dragon boat team, 2) The Eulogy from Tony, 3) Eulogy by Alicia, 3) A poem read by Ella Brady, Ciara Brady and Josie Raza, 4) a word for thanks from Ms Kwek, found of the Breast Cancer Foundation in Singapore, 5) Michelle reading her final letter to Shin and reading Shin's letter to everyone, 6) the photo slideshow, 7) the balloon release.

Below is the final letter from Michelle to Shin:

Hi Love,

Once again I am writing to you while I sit on the plane that is taking me to see you.

I guess the reality is setting in that you are going soon to be where I can't see you, but where I will always be able to hear you and feel you.

I have no idea what its going to be life for you, whether there is somewhere you go, or whether there is nothing beyond this, I will try to ask you once you know.

I don't even know really what it's going to be like for us once you're gone, but this one is easier to work out.

I know that Tony, Josie and Toby will be loved intensely for the rest of their lives. I know that they will be sad and that they will miss their mommy. But I also know that they will have as many hugs and as much love as they need to help their tears and mend their hearts.

I know that they will know their mommy in spirit, helped by everything you have left for them and everyone who loves you. Despite your fears, I know you have given them so much already, You've given them life, love, laughter and everything else you have, that they have needed.

Now, this is the hard part.

I think your work here is done. I think you have given them everything you can and more. I think you need to have faith in what they have already.

You are going to leave us soon, we won't be able to see you anymore. You need to make peace with this.

You can be dragged off the stage kicking and screaming that the show's not over, or you can leave knowing that everyone love it and applauds you for such incredible quality.

You have inspired so many people Shin. Sometimes without even knowing it. You have left so many people with a feeling of faith and confidence in themselves. That's a gift you've given them that they won't forget and that no one can take away.

You are strong, you are hard, you are tough and at the same time you are kind and gentle.

I love you all much Shin. I love every part of you. The good, the bad and the everything in between.

Your Blue Bonnet, Shelly.xxxx.

Tuesday, February 3, 2009

Memorial Service - The Paddle Salute

Below is the video of the first part of memorial service. It started with the paddle salute. These are Shin's teammates from her breast cancer dragon boat team. She was really impressed and surprised by her teammates on her dragon boat team for being so brave, spunky and full of life. Several teammates are still battling advance cancer. Our thoughts are with them.

I was really happy with the quality of the video. Shin's friends Lynn Lee and James Leong who are documentary film makers shot and edited the video. Shin and I loved their movies (Homeless FC, Aki Ra's Boys, Passabe). They have a great knack for finding and unusual story and bringing it to life. Now they are working on a movie about an athlete from Africa who wants to be the first black African in the Tour de France. I think it comes out later this year. Think of it as Shin's parting advice, you got to check out their movies when you get a chance (http://www.lianain.blogspot.com/).

The first video clip: http://www.youtube.com/watch?v=HjxBhYsSBC0

Memorial Service - Eulogy by Alicia

The overall service consisted of 1) the paddle salute and song from her dragon boat team, 2) The Eulogy from Tony, 3) Eulogy by Alicia, 3) A poem read by Ella Brady, Ciara Brady and Josie Raza, 4) a word for thanks from Ms Kwek, found of the Breast Cancer Foundation in Singapore, 5) Michelle reading her final letter to Shin and reading Shin's letter to everyone, 6) the photo slideshow, 7) the balloon release.

Below is the Eulogy by Alicia:


Creating a Better World

Attribute to Shin Na by Alicia Yi

I remember the day I met Shin. Dennis and I were at some dot.com party in year 2000. Dennis and I got separated at the party and when he finally found me at the end of the night, he was all so excited about meeting this spunky Korean woman who he talked with all night…named Shin.

Since I am Korean, Dennis often gets excited about meeting other Koreans thinking he is doing me a favor in rounding up all the Koreans in Singapore on my behalf. But I thought with a name like Shin, I was pretty sure I wasn’t going to like her. I thought she would be old fashioned, conservative and boring.

Of course, when I finally met her later that night, I immediately changed my mind. She was nothing of the sort. I knew right away she was someone very special who I wanted to befriend. We have been the closest of friends ever since….a friendship that is bigger than life itself.

What I Admired the Most

Many of you already know from her blog that she is smart, articulate, witty, spunky, passionate, funny and incredibly fun-loving person. She had strong views on how we can make this world a better place.

She was passionate about educating everyone around her on how we can all make a difference. She never gave up or accepted anything she thought could be done better – no matter how big or small the issue. She was an activist – always trying to help those who are in need.

There wasn’t anything I could not talk to Shin about…openly and honestly. She never sulked or complained about her cancer. There was nothing too sacred, too personal or too painful for her to deal with, that we couldn’t talk about. She was always matter-of-fact about her reality of living with cancer, but it was always with her bright smile, optimism and hope.

I thought about qualities that I admired the most in Shin:

ß I will never forget how much she loved Tony, Josie and Toby.

ß I will never forget how wonderfully happy and cheerful she was before and during her battle with cancer

ß I will never forget all the big and small ways she celebrated human endeavors. It could be…helping save a little boy with leukemia…to cheering on a friend running a marathon to lose his weight.

ß While she would hate to be labeled in anyway, she was a humanist and she lived to the fullest.

ß I will miss her optimism. I will miss her big wide smiles. I will miss talking to her about anything and everything under the Sun.

ß She appreciated and relished the simplest things in life such as:
- a day on the beach with her kids and Tony making sandcastles,
- an evening stroll after dinner singing Louis Armstrong’s “It’s a Wonderful World”
- making up bed time stories for Toby and Josie that taught them life values
- she was always so thankful − tickled by little things Josie or Toby would do…in any given day.

ß She never stopped correcting my grammar. She never stopped educating people about cancer and the environment. She never stopped helping anyone who may be in need. She never stopped hoping for a better world. She never stopped loving. She never stopped living until her last breath.

ß She often said “I want to live until I die”…and that she did. One of the last words she said to me and Michelle were, “it’s too hard….it’s too hard to teach you guys grammar!” She was correcting our grammar to her last breath. She was making witty comments to make light of the sadness we were facing.

ß She taught me how to live. She taught me what’s really important in life. She taught me how to appreciate every aspect of life and relish every second of it.


Closing

Shin has touched so many people in so many ways. All of you here today and all those who couldn’t be here who wanted to be here from all over the world is a testament to her reach and impact she had with her short, but brilliant, life on earth.

And thru her friendship, I have met so many amazing people. Many who are here today who have and will change me in subtle and profound ways.

One of the amazing people I have come to love and admire is Tony. Your thoughtfulness and quiet strength goes beyond words. We all love you very much and I want you to know we are here for you and the kids.

I can see the cycle of love Shin has started…and I can feel it growing and multiplying in this very room. I know this would be Shin’s wish and she would be very, very happy to see all of us start loving and caring for one another to create a better world.

Thank you, Shin. I love you.

Memorial Service - Eulogy by Tony

The overall service consisted of 1) the paddle salute and song from her dragon boat team, 2) The Eulogy from Tony, 3) Eulogy by Alicia, 3) A poem read by Ella Brady, Ciara Brady and Josie Raza, 4) a word for thanks from Ms Kwek, found of the Breast Cancer Foundation in Singapore, 5) Michelle reading her final letter to Shin and reading Shin's letter to everyone, 6) the photo slideshow, 7) the balloon release.

Below is the Eulogy from Tony:

Eulogy for Shin
By Tony Raza, her husband

The English Language
Anyone who knows Shin, knows this is a sad day for the English language. Shin was truly extraordinary when it came to her proficiency with language, and anyone who knew her would be reminded of this repeatedly.

I would guess she would be in some unique upper percentile when it came to grammar ability. She would read the New York Times or Wall Street Journal and highlight mistake after mistake and complain that nobody cares about grammar anymore. My theory is that if you can find more grammar mistakes than the editor of the NYT that should make Shin one of the top .001%. Which when you combine with her type A personality made for an interesting combination. Shin would walk around town with a pen marker and correct sign after sign. Misspelled word here, improper use of “its” – as an abbreviation for “it is” it needs need an apostrophe, but in the possessive form it does not, confusion of lie and lay since everyone should remember that the past tense of one verb is the same as the present tense as the other. She would walk into a store and demand of the befuddled clerk that they take down their front sign that had a mistake. It drove me crazy at the time, … but yes, I miss it already.

The Blog
I think many people here today may be here because of the blog. To me its only a small part of Shin, but it offers a good window into the type of person shin was, so let me talk a bit about the blog.

I had originally suggested to Shin to start a blog so that she can keep family a friends updated on her condition. It was time consuming to make 20 phone calls after every development. Also, we had started reading other blogs about people with cancer and we found it very useful to build our understanding of how the disease could progress and how it affected people. I think if it were me, that was all the blog would have been, a way to update family and some more informational data points for other cancer patients.

But Shin being Shin, she turned it into something more. At some points, She was getting thousands of hits a day and was noted by various newspapers and television reports. Shin would walk through malls or hospitals and people would come up to her and say “you are the woman with the blog”. One time a group of teenagers recognized her at borders and gathered their friends. They said they were Christian and wanted to pray for her. Shin was charmed and agreed. It was a funny scene with 10 or so teenagers kneeling and praying around Shin in borders while she smiled and giggled.

I’ve thought a lot about what was it that made Shin and her blog catch on the way it did. Her gift for words was obviously a strength for her. Her feisty spirit made her posts more interesting to read. Pictures of cute kids probably helped. And there was a lot of sharing of personal details and feelings that I think was appreciated.

But I’ve also long thought that Shin was one of the unique individuals described in the book the Tipping Point. In the book Malcom Gladwell says “The success of any kind of social epidemic is heavily dependent on the involvement of people with a particular and rare set of social skills." He describes the different type of people that are needed to make change and the most important are rarest type is what he calls a “connector”. Connectors are the people who "link us up with the world ... people with a special gift for bringing the world together." They are, "a handful of people with a truly extraordinary knack for making friends and acquaintances". I thought about Shin in that light ever since I read the book years ago, but watching the blog catch on confirmed it to me. I was lucky to have been with such a person.

And of course, the other really special thing about the blog was the connection it made to so many people. Shin and I would read the emails and comments of stories of similar challenges and loss, words of encouragement or admiration and Shin and I would lie in bed and get choked up reading them. I have similarly been reading the comments on the blog that past few days, and I’m very very touched. The kind words, the memories of shin, the sharing of similar experiences are all appreciated. Thanks to you all.

Preparing the kids
One night in the past couple of weeks when Shin was getting more tired, I told her that I had just gone to the check on Josie and Toby who were sleeping in their room. I told her they were so cute and I was so lucky to have the treasure She has left me. She held up two fingers and said “two treasures”.
Shin wanted to be honest with the children and she wanted them to be prepared. When Josie was only 2, Shin told Josie that Shin had breast cancer and that some people die of it, but that the doctors were helping Shin do everything possible to get better. Josie got used to seeing their mother in various stages of treatment, with or without hair, and in or out of bed. And then 2-3 weeks ago we started explaining that the doctors don’t think they can cure the cancer any more and that Mommy could die and in might be soon. I explained that I will take care of them and their grandmother will be here more to take care of them. Josie asked what if something happened to me, and I explained that there was nana and my brothers family, Shin’s brothers family, and friends like Michelle, Deb and Alicia that love and would take care of them too. Surprisingly, it was Toby who asked what if something happened to all the grownups. To which I said well, then I guess the children will be able to eat chocolate and watch movies all day without grownups to boss them around. Which seemed to get the kids positively excited about the idea and they spend the rest of the day imagining how great it could be.
A few days before Shin passed away, Josie, Toby and I talked about what we would miss the most. Josie said she would miss her love, I said I would miss her smile and Toby said all of her. Josie said it was ok because she could always find Shin’s love in her heart, and I could find her smile in my heart, and then Toby piped up “yeah and I can find all of her in my heart”.

To the Kids in the room
We have a fair number of kids in the room. Thanks for being good friends to Josie and Toby. I want to say some thing directly you kids here. Sometimes adults have saying that are clever but a little hard to understand. Lets see who can understand these sayings: ready?
- Ok first one – “It not the years in your life, but the life in you years” – That sound confusing right? To Josie, it means is that your mom may not have lived to be very old, but she sure was happy a lot and helped others a lot with the years she did have. Some people live much longer, but never do as much and love as much as your mom did.
- Here is another: “Don’t cry because she is gone, smile because she was here”. Its going to be hard for us because we are going to miss her so much. But we should remember that it was such a joy to have when we did and really aren’t we lucky for that.
- A friend wrote: “Shin was a small women who made a big impact, she was a force to be reckoned with” - Right, you don’t have to be big to do big things. Mommy was a small person but she made a big impact on a lot of people. Look at how many people are here now.
- Last one: “When death smiles at us; all a man can do is smile back” – That one is about being brave like your mom. When you face scary things in your lives, think of your mom who faced something scary like cancer with a smile.

Shin’s heart
Shin’s English language skills and the blog are interesting points about Shin, but I was really just warming up to trying to say something about what it was that really made Shin special. The was something special about the way Shin was so full of life.

Josie and Toby would know what I’m talking about right?. Josie, do you remember when mommy would come home and squeal “Josie!” or “Toby!” with the biggest smile in the world. Didn’t she just make the whole room fill up with happiness. Its not quite the same as when Dad comes home, right? I say hi josie!, you say hi dad. That is something we will miss.

I recall when I was first falling in love with Shin I had this epiphany about why I was falling so deeply for Shin so quickly. I felt her love and affection would light up a room and make me feel like I’m the only person in the world. I started to tell her how I felt and she said, “yeah that what all my boyfriends have told me”. I actually felt a bit deflated at the time, but I kind of look back at if fondly now thinking about her string of boyfriends that were as spellbound as I was. I guess there is part of it that is true to everyone in love, but trust me, you can only imagine the force that emanates from Shin’s love. I think friends feel it too, and that’s why she has so many strong friendships.

Shin probably would have wanted me to talk more about causes Shin worked for, environment, recycling, saving energy, cancer awareness, kids in need. As many of you would know she would hand out pamphlets on breast cancer awareness to everyone she meets. She saved her head for the children’s cancer foundation only a month after it had grown back after chemotherapy, raising and amazing $20k in the process. She should be proud of her accomplishments, but personally I think it all really starts with that bundle of loving energy the radiates from her.

Good friends
I’ve found there are some benefits to dieing relatively young. I’m comforted to think Shin went out as well as one can. First the nature of cancer lets you prepare. Shin had 3 years since her initial diagnosis and a little of a year since her recurrence to set thing in order. There will always be more that one can think of doing , but Shin prepared well and I think helped put her at ease that her family would be ok.

And being young is helpful when you have young and capable friends to help. Which brings me to friends like Michelle and Alicia. Michelle has been an amazing friend to Shin, taking on the role of being her cancer buddy, which involves organizing an overwhelming about of information, tests, scans and research, and holding her hand during treatment. Michelle and Alicia were in our home 24 hours a day during the final week as we took shifts in caring for her. I was very comforted knowing that Shin had the luxury of being cared by loved ones at home. The hospice doctors and nurses from Assisi hospice were wonderful. And I am so happy that Shin in her death was at peace with setting things in order, and surrounded by an abundance of love that made her parting as comfortable as possible.

Shin’s father wrote in an email to Michelle and Alicia that he was so thankful to them and he thought they were truly angels. Our friend Rahul wrote to Michelle that she was an angel sent from a place Shin says doesn’t exist.

And to the kids in the room, when you want to learn what it means to be a true friend, think of the example of Michelle and Alicia.

Conclusion
On my very first date with Shin …. Not really a date, a lunch. She was a tv producer at CNBC and I came on her program to talk about stocks, and through that we met and agreed to go out to lunch. She told me then that she didn’t want to get married and didn’t want to have kids, and told me emphatically she could never be a stay at home mother. She fancied herself a smart world traveler that was going to live a lot of what this world has to offer and do something good for it. The people she admired were her friends like Kate Webb, the highly regarded, brave, no-nonsense war correspondent, who passed last year. Its ironic really, because, as I write her Eulogy, what it all boils down to for me is that she was a wonderful mother and wife, and ironically, I truly think that is how she would want to be remembered.

In the end, I think Shin was comfortable with her allotment of life. Before kids we talked once that if the plane we were on went down, we’d be ok with that. We’ve traveled the world, we’ve studied at great universities, we had interesting work, and we’ve experienced deep love and various worldly pleasures. We’d prefer more, but if that was all we got, we would have to admit that our lives were among the most fulfilling in the history of the planet. Children changed that a bit, as our hearts become completely engrossed in making sure they were taken care of. Children made it harder to let go. But with the time we had to prepare, I think Shin was finally confident that everything would be taken care of.

Its my promise to you Shin, I’ll take good care of Josie and Toby. You don’t have to worry about a thing. You can rest in peace. Thanks for making us so proud of you. And you will always still be alive in our hearts.

Monday, February 2, 2009

More Links

Thanks to everyone who keep sending me links. Here is another to the Chinese Language paper.

Tony

http://www.omy.sg/News/Local%2BNews/Story/OMYStory200902011815-38435.html

Memorial Service - Director's Cut

Attached, are a couple of video clips that we had prepared for the memorial service, but had decided not to include as part of the service.

There is a clip of Shin being silly and hamming it up for the camera as she danced in a friend's pair of $2,000 shoes. The second clip is from sometime in 2006 when she sang Louis Armstrong's, "What a Wonderfull World", when out to dinner with some friends (she readily admitted she was quite tone deaf, but her spirit makes up for lack of vocal prowess:).

We liked these clips but we were uncertain how it would play at the memorial service. We wanted to the overall service to be a rather upbeat affair, as Shin had wanted, and we were worried the video would end the services on more of a down note than we intended. The photo slideshow was more upbeat as Shin is always smiling.

Luckily we have this blog, to bring the director's cut of the segments that did not make the final production.

Tony


video

Sunday, February 1, 2009

Link to CNA article

Here is a link to the CNA story on the memorial service.

http://www.channelnewsasia.com/stories/singaporelocalnews/view/406103/1/.html

Here is the CNA link on the story of her passing and her decision to leave her body to research. This article also includes a link to the tv news segment that was on the channel the night before.

http://www.channelnewsasia.com/stories/singaporelocalnews/view/405425/1/.html

Tony

Memorial Service Slideshow

Thank you to everyone who attended Shin's memorial services yesterday. I was very moved by the overwhelming warmth and support everyone offered.

We plan to put up highlights from the Memorial service over the next few days. To start with here is the slideshow that concluded the services:

Tony

video