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.

13 comments:

Anonymous said...

Thanks so much Tony for the medical update on Shin. It must be tough on you and Michelle,etc, and Shin for those weeks. But like you wrote, "...Shin had been resilient not just on an emotional level but on a physical level too." and "...Shin did not have to suffer, except for a few episodes..."

This not easy for you,etc, but I think all that had made you even a "stronger" person,right? Of course noone would want to but I think you and Michelle are as amazing as Shin too. I think you did well by posting all these which Shin would do so too.

I think not many ppl can be as strong as Shin and still able to take control of own's "life" at those stage. She indeed is a model for us to learn from, her courage (is not easy to make those decisions), her optimistic, her tolerant level, her loving and caring,etc....

I took a long time to be able to see photos, to look at the belongings when my love one passed away...but you are a lot stronger than me,even many,...you are doing well, but hope you don't suppress too much. Of course "over/excessive crying" is not good but once a while, crying is a way of relieving your emotion,grief,etc... you can also tell Josie and even Toby that because I think Josie is suppressing for she maybe "worrying that will make you sad and worried..." and "she want to be a strong girl like Shin"...I think you and ppl around her must not keep telling her must be like Shin EVERYTIME, because she is Josie, she may have Shin's geneses and traits but she is still different individual...I think most of us tend to neglect that...

You can encourage her to learn from Shin BUT not to make her think that SHE MUST or SHE NEEDS to be like Shin, that's too much pressure for her...I think she is not only sensitive but she does has Shin's strength and she will try to BE the person that many EXPECT her to be (maybe unintentional or subconsciously being exerted on her.).

because if everyone starts to tell her all that, she will get irritated by the mention of Shin one day, if she is actually not the kind of personality or if she are unable to be like Shin, or she can't take it ... hope you and everyone can take note of that...so sometimes you need to tell her or explain to her that Shin is a very strong,optimistic,etc, and she should feel proud of her, and can learn from her but ... so that she understand and not mistaken all that as "asking her MUST be like Shin".

Take care and as what I said, I think some of us also have been telling you that is ok for you to grief,cry, and is important to take a breathe, give yourself time, peaceful and quiet moments,etc...because we know you are also trying your best to be strong,etc. Adults and kids are similar in many aspects and noone is exactly the same. Take care of yourself too. Remember that discipline, love, security, concern, moral values,etc, are equally important to Josie and Toby. :)

Anonymous said...

Hi Tony,

What can i say.......... There are always not enough time to say goodbye isn't it? No matter how prepared we were.

My husband was given a time frame of 2-3 months then but also died within one month since we were told of the condition. Similarly, his liver was affected and due to that condition, the last attempt on chemo was not administered. Like the decision you all made, we also rather have more time than to try..... However the time is still short in my opinion.

Personally i thought i have more than 3 months. The opinion is that the medical team will always give a more pessimistic time frame. How wrong am I. So in a way, i am not really prepared for my husband death. I was also not very appreciative of the social workers, palliative team. I cannot reconciled why they keep talking about death and 'how are you handling'......... Reading your post, I somehow wish maybe we had a different approach then. However what's past is past, i cannot have such regret with me as it will not make my life easy. I am sharing so that others in the same situation may start to appreciate the palliative team..........

Evelyn

Steve said...

Hi Tony,
Yvette just celebrated her first birthday today. I couldn't help but think how much I wished you and the kids could be here. We had a great party with so many kids running around. Remember what we talked about after Shin's memorial? You and the kids are always welcome to come visit us in Beijing. Anytime. Speaking of visits, i had a very vivid dream the night after the memorial. I hope you don't mind me sharing, but it was very comforting. A very similar thing happened to me after my dad passed away. In my dream I was walking through a flower market and there was Shin, selling flowers. She looked at me and said 'shhh. I'm ok here. I'm selling flowers.' That was it, but oh so vivid. I don't believe in these kinds of things but somehow I hope it was her subtle way of saying goodbye. Please don't be shy about visiting us in Beijing. Please.
Take care,
Steve

Anonymous said...

Hi Tony, you must be feeling sad looking at Shin photos and recap all the past... I think is good and very couragous of you too. Thanks and do remember we are here for you and Josie and Toby.

Tony said...

Hi Evelyn,

I've had you in the back of my mind as I've been writing the past couple of posts. I'm trying to share that dying from cancer does not have to be that scary. But I'm aware that many cases have been difficult for others and many situations will be difficult no matter how prepared one is. I certainly don't wish to anyone else's experiences to seem even worse in their memories as I recount a fairly peaceful passing. I didn't really feel like I knew what was right to do at many stages of Shin's last week, and I had a lot of time to prepare.

I'm someone that likes to be methodical and prepared for things in life. I read lots of books on childbirth and raising kids. But what I read about dying was mostly about the emotional side of it. There are not many guidebooks about the what specifically to do at the end, and that's why I wanted to record it. I'm sure Shin would have wanted me to and for me I find it therapeutic to document it and put it to rest in my mind.

Kathie said...

Hi Tony,

If you feel that sharing and documenting your experiences is a way to let go, do it then.

We are all ears for you.

Kathie

Anonymous said...

Tony, we do know that Shin loves to read a lot and is great to know you love to read and be prepared...haha but you need to be prepared for all the unprepared too :P...jokes aside, I am really happy that you are finding your own way of therapeutic way and document here helps you. You are doing very well. :)

BTW, is Josie birthday near? Like to say Happy Birthday to her. :)

Anonymous said...

Hi Tony,

Don’t get me wrong. You have a right to feel what you feel and do what you want to do to make you or the kids feel better. It’ Shin’s blog and you are continuing the legacy.

I am just sharing my thoughts (not regrets) so that people in the same situation can have an open mind to it. At that point of time, maybe I wasn’t really to face my husband’s death therefore I thought by not talking about it, we can ‘prolong’ it? I don’t know.

I like what you say “I didn't really feel like I knew what was right to do at many stages of Shin's last week”………. I guess everyone in the same situation will feel the same. Whether we have done enough, too much of this, too little of that……………….We will always have a second guess to whatever decision we made…

Someone once asked me if I would make any different decision in terms of my husband’s medical needs – my answer is no simply because the time was just too short. He was diagnosed in early Oct 08 and passed away in mid Dec 08. Two months time frame is simply too short to try different options/ approach on the medication.

When the doctor told us of the terminal condition, the family and I aren’t ready to give up and we were busy searching for natural alternative treatment rather than preparing to accept ‘death’. I have many many thoughts after my husband’s death. Some rational, some not. Who knows – maybe if I accept the palliative team’s help etc then and I will be here today to question myself if I should spend more effort to search for alternative treatment and prolong his life? But such thoughts will not help me to move on in life. This is what I meant in the previous post. Maybe the time from diagnosis to the death is just too short for me and my family to be prepared mentally. But i take heart that we have many beautiful memories to hold on to rather than regrets. Borrowing Shin's words - My unhappiest moments are too few and too unimportant to remember.

So what we should do is to cherish the beautiful memories that we have. I am sure there are plenty of beautiful memories that you will have of Shin and as a family together with Josie and Toby.

My husband is a man of few words by nature and he was unable to express much about himself in the last weeks hence reading Shin’s sharing has helped me to identify with the things/feelings that were going through my husband at that point of time. That’s why I said Shin’s blog has helped more people than she can imagine. So continue writing. 

Evelyn

Gavin said...

Dear Tony,
Thank you so much. It must certainly not be easy for you to be doing this.

You have done tremendously well! - For Shin and the Kids.

Cheers!

Anonymous said...

Our earthly body is a temporal one subjected to pain,sickness and death.

in spite of our weak body, the human spirit can be strengthened or transformed.

In the midst of the struggle, we can reflect on the meaning and the significance of events that affect ourselves and our loved ones.

Tony said...

Anon,

Yes it is Josie's birthday this week on Friday. We are having a party at the Kallang Leisure Park Ice Rink. She seems really excited about it.

Tony

Anonymous said...

Thanks Tony for this update. I think it will be really helpful for some people who are going through the same phase.

Paula said...

My mom actually went pretty fast. We found out in was in the brain just about 4-5 weeks prior to her passing. She had gamma knife to try to get the tumors in her brain. To make a long story short, after the gamma knife she had a brain bleed. We got her to the hospital and she was in a stroke like state, just staring to the one side. ER doc said it was "gaze palsy". Anyways, they did a CAT and she did have a brain bleed and we found out at that time that the tumor in her lung had grown to the size of one's fist. It took her 2 days in the hospital to pass away. We kept pumping her full of morphine to keep her comfortable and kept moistening her lips. It was the hardest two days of my life. It is tough every day, however, the suffering and constant "bad news" of where the cancer had spread to was just too much to bear. She had her cancer initially in her hip, shoulder, liver, lung and then the brain a year later. Peace to you and your family.