a jungle out there

T loves to sit with me on the armchair. We like to look out to the garden and beyond - which is a large expanse of greenery. After this green belt is the PIE (Pan Island Expressway) - this green belt keeps down the noise and exhaust pollution from the houses situated over this side of the greenery. And for the last 12 years we are thankful that this patch land has been kept as it is and even happier that more trees have been planted.

For grandson and I, we call it our "jungle" where blue elephants and monkeys roam. Real monkeys....yes... especially after rainy days, we see hordes of them gingerly clambering along our fence, making their way towards nearby Rifle Range Road which borders the Bukit Timah Forest Reserve. Sometimes they sit on the roof of our patio, on several occasions they would "play" and rummage the cushions of our outdoor settee. We stay clear from these monkeys, especially the male adults can be rather fierce and aggressive. Starring at them is a no, no.... we have been told by the Environment Agency. And of course T is not allowed outdoors without adult supervision.

So, yes... we have a jungle out there!
Blue elephants too.... ah ...we hear their grunts (the traffic from PIE) ... they hide behind those huge Royal Palms.  We sit on the armchair together appreciating the animal kingdom in our back yard .... closing his eyes he hears the birds chirping, peeking through his fingers, he looks hard for the blue elephants and the giraffes. What a lovely way to spend the mornings!

 

Fireworks

Forty-six years of nationhood on 9 August - this annual celebration draws many Singaporeans and tourists alike. For many years we are happy to just watch the parade and fireworks on TV.  Last year we were very close to the parade grounds, we spent the eve of National Day at Fullerton Hotel - venue of G&A's wedding. It was a double celebration!

fireworks over Marina Bay

This year we were invited to watch the fireworks at Fullerton Bay Hotel. There was a queue of people just waiting to go up to the Lantern - the open air rooftop which gives a fantastic panoramic view of the Marina Bay.
It's really quite surreal with loud jazzy music (we were seated right next to the speakers!) in the background and guests trying to talk to one another above the din. Most people were standing at the edge overlooking the water of the Bay, excited by the passing Chinooks etc hovering towards the parade grounds, the helicopter with the trailing national flag and of course the fireworks shooting up into the night sky. And it is really quite impressive against the outstanding and magnificent architecture of the Marina Bay Sands Hotel!

Marina Bay Sands

seating platform

Attendees to the National Day Parade were seated at both ends of the vast expanse of the Bay - really hard to describe - the Bay is huge. Being where we were, is certainly far better than being at the parade grounds,  it is not as crowded and in between the displays, we chatted and ate.

I really quite enjoy being in this party- like atmosphere and I must say it is because I am feeling physically well (thanks to my 2 weeks med free holiday!). It has been such a long time since we last attended parties.... so it was a lovely treat - most enchanting and delightful - especially in the company of friends, there were 13 of us. Grateful for such fun-filled days... grateful for friends. Thanks KY and LY!

medical update

It's been quite a while since I updated my medical status. In a way, no news is good news. The last two blood tests in June and July showed the m-spike to be hovering around 5. All other readings are good. And a quick full blood count taken yesterday (post flu) showed wbc to have gone up to  3.86, almost at the low end of the normal range. According to the doc this is good, I am responding to Vidaza.
For MM, whatever we do, even increasing the dose of Velcade together with Revlimid, didn't help to bring down the spike. I am probably one of those with lingering myeloma plasma cells that resist total wipeout! Of course my doc is not willing to add any more toxic drugs just to eliminate it. There is a price to pay going that route. As long as he is able to control the myeloma and not allow it to cause havoc to the bones etc...    Therefore concurrent monitoring of bone health is crucial.

In the meantime I will go with:
10mg Revlimid 3 wks on 2 wks off,
20mg Dexa weekly  3 wks (argh...)
Zometa once in 3 months
I interrupted the protocol when down with flu, the doc gave me a 2 week drug holiday, we'll see in Sep whether it has any effect, hopefully not.

It will be a month's time before my next appointment... Hooray!

This video is an interview with Dr. Berenson holds a similar position as my doctor's approach towards treating my myeloma. Having watched it, I am again assured of the route we are going.


Ask Dr. Berenson: Updates on Myeloma Treatment and Bone Health (August 2011) from Patient Power® on Vimeo.

house with a story

old whitewashed "Bethany"

 Houses tell a story.

We made a visit to Villa Alicia, a project of art photography (portraiture) held in the old home of Dr. Nalla Tan, a well regarded and prominent physician. For a week from 6th August, the photography installation will be held at 43 Binjai Park, the family house of Dr. Nalla Tan. After this exhibition, the house sold by the family will be demolished.

a long driveway

The rustic house (1950s) is located two roads away from us, has always captured P's interest whenever we drive by. On its gate, it carries the name "Bethany".  Old houses like this, draw our interest as to its history and the stories they tell. We were delighted to know that an art exhibition is being held there and is open to public. We drove there on Saturday, late afternoon, the first day of the exhibition. Already there were a few cars parked along the road. The house has an extremely wide frontage with two gates, one to enter and another to exit. In its original condition, the external walls whitewashed in white and there are a few short trees and bushes sparsely situated around.

We were guided through the exhibits. Without the guide we may not be able to appreciate the art form.  We  walked through The Dining Room, where Dr. Nalla used to enjoy entertaining her friends, we see it in pictures left around; The Kitchen has a simple table with a single setting of a melamine bowl and a mug, Dr Nalla Tan has for many years been suffering from Alzheimer disease. She moves around in a wheelchair. The furniture in the rooms are old and rather forlorn, a chair with a broken back still kept in her bedroom. Why, asked one of the visitors. It's because she has lost most of her memories, she needs the familiarity of the oldness and the past.

family album on the paino

As we moved from room to room, we noticed on the walls, some pencilled scribbles, these are to remind her who are in the photographs. She was an avid painter and some of her works are displayed - her first oil painting. An old photo album with faded black and white pictures of the family, was placed on the piano for us to have a glimpse of their past.

scribbles on the wall

On a table, lay some of her personal records - a diary containing "those harried scribbles by hand, those precious remnants of her fast-fading thoughts in a time not from her Alzheimer's riddled days," (wrote the artist). Indeed the "musty smell of well-worn pages" waft as we gently turn them.

first oil painting

We are really impressed by this artist's installation, its originality and creativity convey vividly and intensely memories of the past. It tells so well the loneliness and sorrow of a brilliant mind ebbing away, much of it stolen by a dreaded disease.

P.S. Villa Alicia, is the title of a short novel written by Dr. Nalla Tan, aptly this has been selected to be the project name, by the artist herself named Alecia Neo.

Merbau Jambu

A bird in a cage hanging off a branch at the treetop walk of Kent Ridge Park. What an irony for the bird, so close to nature, to what is home but no freedom. This beautiful merbok jambu has a cute pointy head, was quite happily chirping about in this environs. He was chirping with other "free" birds. Within the constraints of his cage, he flitted up and around excitedly. His owner stood a distance away watching - bird's like his kid having a funtime out at the playground, socialising. We walked past and ahead, hung another cage on the branch. Now this bird was quiet. Sitting on his perch, he hardly move, neither chirp nor flit. He was nonchalant. Not interested. Or maybe he was unwell? The freshness in the air, cool breeze, the friendly wildness did not charm him, didn't stir his feather! Quiet as a mouse, he perched. We didn't asked the owner, why. We walked on.

Found a better, close-up picture of a merbok jambu.

the flu bug

I was down with flu since last Thursday and I am now on the road to recovery. This time the primary bugbear was a racking cough and a low grade fever, that went up to 38C but mostly averaging 37.5C
How did I handle the flu? With the first sign of unwellness, I started on a 5-day course of tamiflu and I am quite certain that because I started it almost on the first day of the flu, I did not feel the full impact of the flu i.e. not as sickly and bed-bound. Whereas the previous occasion of flu in April, I started on tamiflu much later and the flu took took a longer time to resolve. My doctor's view is to quickly take control and not allow any flu or infection to prolong and risk complications.
And yes, I did get the flu vaccine last Nov but it does not guarantee no flu but maybe reduce the severity... I think. Anyway some form of protection via vaccine is important for MM-ers because of our low immunity.
With cough, after a few days it almost always turn into a bacterial infection in the throat and for this is, I started with a short course of azithromycin. I am not coughing today so I think the treatment so far is working well. Coughing can be very tiring and exhausting to the chest and of course affected my sleep. Thus I am very glad it has stopped and I can rest and recover.

It is important to know what to do and when, so that my unwellness can be minimized. All of these done under the "auspice" of my doc, who was away but contactable by phone! That is how personal our doc-patient relationship is!
Thank GOD for doctors, for medicines, for prayers  ....

A scoundrel?

I read this from the workbook on faith, a comment on Jacob of the bible. "He is such a cheat and scoundrel", (he deceived his father and stole the birthright of his brother). Why is he in the hall of faith (Hebrews 11)?
I thought the response given by B Knuckles is worthy of consideration. 
"Where do you get the idea what human beings are supposed to be? You begin with an image that they should be 100 percent perfect, and if they are anything less, they're worthless. I think GOD starts at a very different place with us. He begins at zero, for He knows who we truly are. Then with every step we make on His direction, He is cheering for us,"
This is the mystery of grace. 
After tracing Jacob's life in Genesis 28,32,35; we see that ultimately, GOD focused on who He called Jacob to be rather than who or what Jacob had been. 

Thus even a scoundrel or a cheat, GOD can use when it is a life transformed by GOD's amazing grace. Who then are we to judge or condemn? 

Bukomites

Bukomites? These are ex-residents of Pulau Bukom, a small island south of Singapore. It has been used by Shell for almost 100 years (storage of petrochemical products) and this year,  Shell celebrates 50 years of refinery activity.
P lived in Bukom for 6 years from 1964 to 1970 as his father was part of the electrical engineering team. The Bukomites were invited to spend the morning to make a tour of the island which is now solely a petrochemical complex and nothing else, no more residential apartments and ancillary services. P recalled from the name list of all visiting, the families were from various occupations - the Han family were bakers, the Nonis' father was the police inspector, another family did repairs of bicycles etc. As I hear him recollect, it almost have a "kampung" feel to it. Such a special group of people - they are the last of the Bukomites. Some of them brought their mostly grown-up children and there were even a few of the Bukomites' parents, those who worked on the island. They are very old.

I decided not to join in the visit, did not think it a good idea for a MM-er to breath in the air of a petrochemical complex. But I was able to drop him off and pick him up after 1pm. Access to Pulau Bukom is still by ferry. Unlike early years, now the ferry ride is 15 minutes. P used to have to commute every day by ferry to schools on the mainland, about half an hour each way. Before Bukom, he was living in Cameron Highlands (P's father was working at the Hydro-electrical dam), and he was traveling up and down the Highlands to school. He told me the rides along the winding mountainous roads, sometimes made him nauseous.  I think he has quite an exciting childhood and I am sure he has lots of stories to tell.

KTM track walk

Yesterday morning, P and I, and dog and grandson T, made the KTM track walk before it is closed to public in 2 days' time. The Tanjong Pagar Station officially closed at end of June and the tracks opened to public till mid July but a small section from Rifle Range to Rail Mall will remain open till end of July. Hopefully, our civil service officers from the National Environment or Park Agency will consider the many requests from Singaporeans and residents, to preserve and convert the land into a green corridor. We really need to keep more of these outdoor spaces in its original and not concretize every bits of available land. Recent news was announced on redevelopment of the Bukit Brown cemetery, situated right in the midst of central, prime property. This raised many objections from nature lovers and of course not forgetting descendants and family members of all those buried there! It is a cemetry with lots of history. The story of Bukit Brown has to come under another post.

We have seen many people walking the tracks the past two weeks and decided that we should also make a last visit. The Bukit Timah station is just a stone throw from our home. We stepped on the tracks, very safe, no train will be chugging by. It's not easy walking on the tracks, they were layered with granite stones on all sides. I'd rather step on the wooden plats than the granites.
The surrounds of greenery is raw and rustic. We heard sounds of birds but didn't spot any. I'd thought there would be plenty of monkeys but none seen. No squirrels too. Surprising. Maybe there have been too many human intruders the past weeks.
Little Thadd, at 26 months is a good walker, he walked by himself on the granite covered tracks, stopping now and then to touch the greenery. He kept asking to see monkeys; to him, this is jungle and we always tell him that the monkeys who roam along the fences and gates of our neighbourhood, return to the jungle at night.

 Along the way, we spotted some lovely flowers, whites ones with a tinge of purple on its (?)sepal.  One got to pause and look around the greenery to spot the flowers. They are actually quite small.  Some plants have humongous leaves. Well, this stretch of the track has quite a bit of greenery. But it soon would be closed off to the public, as workers will be starting to remove all the tracks and return them to Malaysia. Hopefully after all this is completed we may see this route kept as a green belt for joggers, walkers, cyclists etc. There is so little left of natural greenery in Singapore. We really should not try to monetize every square foot of land, else we lose nature, history etc.



By 9am, there were a lot more people and we pleasantly bumped into our friends P and CT. They started from Rail Mall and took an hour to reached this end of the Bukit Timah station. For them it would be another hour of arduous walk back. We had parked our car at the BT station so the hour long walk within that vicinity was not difficult. But one got to be careful walking on tracks as the uneven granites layer can easily cause one to trip.

On the whole it was a morning well spent.  

Another delightful friend

I am truly blessed with wonderful friends! The next day after meeting up with our friends from Perth, I met with my ex-colleague from Paris (we worked together in the bank). Each time she visits Singapore, we will meet for coffee. From a single to now a mother of 2 boys, 11 and 4 years and myself now a grandmother of 2 boys, 2 years and 2 months! How time flies!
Indeed it is so delightful to see how blessed we are, we have family. Yes, this verse came to mind. Psalm 16:6 "The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance." Our family is our inheritance! Still busy with work, her blackberry puts her on call 24/7, she said she may want some re-balancing. We agreed that the next time she visits, we will gather with more of our ex-colleagues. And I shall surely call on her when/if I make a trip to Paris.

Ah ... I am so glad I had a warm, woolly knitted shrug which I did some time ago, I gave to D. It was in my "knitted" box waiting to be given to the right person! (See the shrug fitting snuggly on her shoulder).

Delightful friends

Our annual "entrance" pose, except it's not Christmas which is when we would gather. This time, our friends from "down under" are back for a visit and we just have to gather. Another couple will be returning to Perth in August. It's just so delightful to renew this friendly bond. Just being together brings cheer to the heart.
Everybody brought something - the Aussies would call it "bring a plate" - we had fish head curry, rojak, glutinous rice, roasted meat, mango salad, curry chicken, pastries, lychees, longans, grapes - what a delicious spread.

The conversations stretched from Singapore political scene (livened by the recent general election and the forthcoming presidential election, ministers' pay);
blissful sleep (Psalm 3:5 the Lord sustains, Psalm 4:8 dwell in safety, Proverbs 3:24 sleep will be sweet)

Our children now young adults, in their twenties, had a great time catching up, most are in universities, or starting work. Even after our big feast, they left to have supper!

Such bonds of friendship are precious and we must continue to cultivate and build on it.

lotus-ing again

lotus in the pond 

It took almost a year for the lotus to bloom again. Last April, I had a post on the lotus and this year it bloomed again in June. It didn't last many days, maybe 3 days, as it has been raining quite heavily. But for the few days, it truly brightened up the mornings when we walked down the stairs, inevitably our eyes will be drawn to its beauty! 

I am sure we can get it to bloom more often if we add some flowering granules into the pot. But really, it is more lovely when nature produce beauty at its own time and season.... no need to rush or hurry it along....say no, to instant gratification! 

A week ago, the lotus bloomed again. How pretty! What a surprise, flowering after a month.

Amazing, Amazing!

Amazing, GOD's grace is amazing!
This morning as I pulled out the daily reading from RBC the passage is Col 3:12-17. And I was stunned! WHY? Because this is exactly the passage I have decided to share with a group of ladies meeting at 9am this morning. Let me explain.

A group of 14 ladies are meeting with our elderly missionary from NZ. She visits Singapore almost every year in June/July. Five years ago we had a similar session and I recalled jotting down her words of wisdom. This time round we are to meet, share and reflect on how well (or badly) we have lived those words of wisdom. We are to come prepared to share.

I have been thinking about what I should share. I remembered about 3 years ago I wrote and shared this short writeup on this missionary. As not all these ladies were present at that time, I thought it appropriate to share again at the session this morning. Over the week I prayerfully considered and determined that this is what I should do. And this morning's Bible reading from RBC Daily Bread is on this same passage! It affirms to me that indeed it is what I must do. How great can our GOD be, in showing me His grace in such a special and personal way. (I do not believe in coincidence, I believe in a gracious and personal Heavenly Father who knows everything about me, my thoughts, my needs and my physical well-being. (Even allowing the doc to have me keep a dose of dexa for Friday night, so that I can be sure of being able to attend the session).

Yesterday, I have been humming this song "How great is our GOD, sing with me how great is our GOD", not knowing why, now I know! Indeed He is great beyond my comprehension.

I will write here what was written and shared. The life of this missionary is one whom we can emulate, though she is quick to say, she is far from perfect and still needs GOD's grace to work godliness into her life.

In quietness and trust is your strength (Isaiah 30:15)
Your beauty of the inner self, the unfading beauty of a quiet and gentle spirit, this is of great worth in GOD's sight; (1Peter 3:4)
You are like a fruitful vine within your home 
and in the house of GOD; (Psalm128:3)
You are a wife of noble character; 
a crown to your husband. (Proverbs 12:4)
(Colossians 3:12-17)
You have clothe yourself with compassion, kindness, 
humility, gentleness and patience;
And over all these virtues, you have put on love 
and bind us together in perfect unity;
You allow the peace of GOD to rule in your heart and the word of Christ to richly dwell in you as you teach and admonish us in all wisdom.
In everything you do, you give thanks to GOD our Father.
We praise Him. To GOD be the glory.

40 days

Start July, every year, the LoveSingapore movement will devote 40 days to Pray and Fast for our nation. I went through the first day's reading and considered the reflections and thought it helpful for myself.

One question asked - "in all of my doing, what am I becoming?" Obviously though I have been a "doer", I am now less able a "doer" and focus on the more important aspect of a "be-er". And that is the whole theme of the Be-atitudes (from Sermon of the Mount). The important teachings of be-ing is found in Matthew 5. Having the right attitudes and character.
And even in my "doing" am I wrapped up in my own little world? By GOD's grace I want to be able to participate in seeking His Kingdom and seeking His glory. It is easy to be too caught up by one's own challenges in life and be oblivious to the sufferings of others. May the LORD open my eyes and my heart to others and in my own little way, render a little help and a little love.

This is the recommended personal manifesto:
"I pledge never to walk alone, but with others. I will draw near, close ranks, and work with others. I will think the best of others, speak well of others, esteem others better than myself. I will celebrate the success of others, serve others, learn from others. I will listen deeply, love richly, and lead wisely..." 
May GOD help us

cycle 7 Vidaza

I am so glad to have completed the 7 days of Vidaza. It is never a pleasant experience to to be jabbed so many times. The physical discomfort is real and this time round there were a few days of "misery". A bit of low fever for the first two days with quite an achy body. The surface redness on the tummy affected my sleep somewhat. The earlier cycles of Vidaza were done on its own, this time, I continued with 10 mg Revlimid and a pulse of dexa. Hopefully the combination will help for both MM and MDS. The reduced dose of Revlimid from 15mg to 10 mg should help to reduce fatigue. But as doc said, Rest, Rest and not expend energy. So far my experience with Vidaza, is that it does require me to rest more.
The latest bloodtest result show all numbers in good range, except m-spike still at 5.66, even this puzzles the doc. If we can't get the number to go down, we still need to stop it from climbing without having high dose of targetted drugs. We got to find that balance. I am scheduled to see him in 3 weeks time for review. In the meantime, I have 3 weeks to recover from cycle 7.
But I must say that I am very thankful that Vidaza is effective for me. There are many MDS patients with serious problems and  require regular blood transfusions etc etc. and experienced other complications. My doc is diligently watching over my condition.
In two weeks time I am quite sure my physical well-being will improve, talking from past experience!
 

Kytril, please

P would sometimes tell me that I speak too soon.
Two days ago, I said I declined the nausea med, kytril.... Well, the next day, I took it and shall be doing so. Never can know how we react each time we restart a treatment! But just be thankful we have all the help we need to handle most situations. I also reported to the doc about the warmish feeling in the evening and asked if I should still take the dexa as he prescribed. He said this mild fever is expected for Vidaza and it is not the start of an infection, so it's safe to do dexa for 3 days. Well, I will be looking forward to the super-charged up feeling and maximize on this! Since I have a very special meeting coming up next Saturday, my doc helpfully suggest that I can keep one dose for next week so I can have another bout of "high"!
How wonderful can this be?

Spicy nonya soup

On the way from KL heading home to Singapore, we decided to spend a night at Majestic Malacca. It is one of our favorite accommodation in Malaysia. 

There were 3 cars heading to Malacca and we were at different hotels. That did not stop us from meeting up for meals. We had lunch of chicken rice balls at the junction of Jonker Walk. Some one commented that the size of the rice balls have shrunk! That's the effect of inflation, if price remains the same, the food portion has to be reduced. 
For dinner, the more adventurous among us, went to Capitol at Bukit Cina to have satay celup. Sticks skewered with all kinds of meat and seafood, dunk into hot boiling peanut sauce. This famous and favorite outlet sees patrons queuing half an hour before opening time. Our friends KW and G, drove by to pick up Russ. 
P and I decided to give this authentic Malaccan dish, a miss and stayed in to have a light meal. We shared a main of fish fillet with spicy nonya sauce and a tangy oxtail soup. P said I was animatedly talking as I ate ... ah ... bad and poor eating habit! I thought I swallowed a fish bone! Never talk when eating fish... 
But really the fish was served fillet and I only felt an irritation when I was drinking the soup. 
I deduced that it was the spices in the soup that abrased my throat. I think it could be something like part of lemongrass etc. I could not really tell. It is impossible to exercise care over the drinking of soup, one tends to just swallow rather sieve the morsels contained therein. But there are real and present dangers in nonya spicy food, their spices can be hazardous. 

Anyway we did consult (by phone) P's cousin who is an ENT doc. Thankfully, the next morning I did not feel the irritation in the throat. Thankfully we did not have to rush back to Singapore. I will exercise more care when I eat. P will for the next few days, nay, weeks and months, be cautioning me about fish bones whenever we eat! 
P, my doting husband, also nags. 

We truly give thanks to the Lord that no harm came to me! Amen.
:-)

2 copper coins

Just got back from church camp at Putrajaya KL. We spent 4 days there and the theme was Sermon on the Mount. There were many lessons learned from the daily teachings and discussions. But I want to recount a personal encounter which blessed my heart.

On the last night of the camp, while waiting for dinner to start, I walked by GT and LC. I sat down next to them and asked what they think of and learn from the camp. LC is visually impaired and when one talks with her, you can't be sure if she is listening, she does not focus her eyes on you. She cannot. We tend to talk with eye contact. Do we have a problem talking with someone who cannot maintain eye contact? I think I do, I speak more slowly and with simple words and short sentences. This may not be right since the person may hear well and is not mentally challenged. 

But LC is timid and not confident of speaking. Nevertheless she shared with me that she is thankful to GOD for teaching her to be dependent on Him - He is sufficient. I did not ask her to explain and did not want to question her simple sharing. Thinking that she is unable. I was wrong.
At dinnertime, I sat next to LC's elderly aunt GT who has just gone through a heart bypass and was hospitalised for kidney failure. By GOD's grace GT is now physically well and mobile. GT tells me that LC was very anxious over her health.  LC has no other family member and cannot see how she can live on without her elderly aunt. She has real worries!

At the camp sharing, later in the evening, I was amazed that LC inspite of her timidity, stood up to give thanks to GOD and in her almost inaudible voice spoke the assurance of her learning - Do not worry about tomorrow (Matt 6:31-34). She did not explain her situation and link it to what she learned about not to worry etc. It really did not matter. It was just her sincere expression of thanks to GOD that really count. 

As I reflect on all the sharing made that evening, in my heart I felt this simple expression of thanks would most truly be pleasing to our Heavenly Father. She is just like the woman who had nothing but 2 copper coins and she offered it. Dear LC has nothing, no eloquence, no courage, never stood up in public, except this instance her momentary "boldness" she gave her all. 

Mark12:41-43
 41 Jesus sat down opposite the place where the offerings were put and watched the crowd putting their money into the temple treasury. Many rich people threw in large amounts. 42 But a poor widow came and put in two very small copper coins, worth only a few cents.
 43 Calling his disciples to him, Jesus said, “Truly I tell you, this poor widow has put more into the treasury than all the others.

Vidaza 7

Today, I started cycle 7 of Vidaza - 4 daily jabs over 7 consecutive days. The nurse offered me, Kytril to control nausea but I declined, as I have been able to tolerate the nauseous effect for the last couple of cycles. I do have some at home which I can take if the nausea comes on. Best to have minimal medications, some of these medication may cause other problem such as constipation etc.
How am I feeling now? (P just asked).... first day... and my stomach feels like I had consumed lots of chilli. That's the kind of feeling. Hopefully, and praying too, that I won't be feeling this way for the 7 days!

My main distraction... knitting a blue sweater for Nat!
And possibly to blog about the last few days which we spent at church camp in Putrajaya, Kuala Lumpur.

4 Years!

I have just crossed the 4 years mark! Yes, indeed I am one of many who are surviving myeloma, with the many treatment possibilities, we are able to live on, hang on ... 
I must admit that it is not without struggles - a large part of my "new" life revolves around countless hours spent at the clinic. But P and I have made new friends - Annie, Aggie and Walter, David, Toon Jin etc also some friendly readers from cyberspace! (Sandy, you're counted as one).

I think it is remarkable that the ACOR myeloma community has given me alot of mental support. Patient Power subscribes to the motto - knowledge is power! that is true for me. Fellow bloggers motivate me with their courageous zest for living. Zest.., and substantial perseverance. Their courage is contagious! 

And I am counting my blessings every day. To GOD I am thankful. I appreciate every beauty I see. I respond to every kindness shown to me. I rejoice and delight in every encouragement that comes my way. I am even more glad if I can give some in return. Really it is more blessed to give than to receive.
And everybody wants to "give" to me, protect me, care for me and love me!

Over the years, this verse resonates deeply in my heart and it speaks my conviction. 
Psalm 118:19-21 "Open for me the gates of the righteous; I will enter and give thanks to the LORD. This is the gate of the LORD through which the righteous may enter. I will give You thanks, for You answered me; You have become my salvation."

4-years.....
I am still junior compared to the 10 or 19 years survivors .... plodding on or blogging on! GOD willing and by His grace, I am "running" this marathon. 

a bunch of pinks and whites

We went cycling at the East Coast Parkway with Thadd this morning. Started at the back of Old Town cafe. As we rolled our bikes off to the cycling path, we past the walkways just outside Old Town. The walkways were beautifully surrounded by greenery and flowers. We saw some lovely pink and white flowers. (see next para)
We cycled till MacDonald's and stopped by the beach to rest. Thadd walked along the sandy beach (by himself... but we watched him). Two young boys were playing and their mum was sitting on a mat. She waved to Thadd and offered him a small spade. He looked to us and we nodded our assent.  For a good 10 minutes he dug the sand and scooped it into a container - quite happy on his own. Soon we cycled back. On the way, I spotted friends, Richard and Sharon. I called out to them as we past, they on the walk path and we on the cycle path. At the East Coast Park we frequently meet friends walking, jogging or cycling.

As we returned to Old Town, this time we saw a park gardener trimming away the patch of pink and white flowers. What a waste, the flowers lay wilting on the ground.
We had a light breakfast of roti prata with teh alia (tea with milk and ginger). When P loaded the bikes, I went to the gardener and asked if I could have the flowers. Yes! and he gladly picked those that have not been trimmed off and offered them to me. I was delighted. And I am sure he is happy that someone asked for the flowers. I don't understand why he had to trim off all the flowers but he assured me that they grow and flowers well if regularly maintained.

What a beautiful bunch of pinks and whites - just looking at them brings cheer!

the yellow helmet

Last weekend Paul had a toddler carrier mounted on a bicycle which we borrowed from a dear friend. We decided it's time to get Thadd on the bike.
We bought him a yellow helmet and went cycling along the West Coast Park. It drizzled after we made one round and we stopped at Macdonald to have coffee, milk and hashbrowns. 
There were lots of children, it's the start of mid year school holiday. 
Two young boys, maybe 4 or 5 years old, passed our table and stopped to admire the bright yellow helmet. The younger one stood almost a good 2 minutes looking at the cats on the helmet, and talking to his mum. 
Our little Thadd, all the while sitting on the chair, without saying a word, slipped out of his chair, walked round the table and reached out for the helmet and held on to it tightly. He had this look that says it all... "enough looking, this helmet is mine"
The adults around couldn't help but smile at his act of possessiveness. A 2-year old first sign of independent thinking! Our little Thadd is growing up. 

Holy Holy Holy

Holy Holy Holy

I must recount this so that I do not forget what a special blessing from our Lord. This blog is a journal of the blessings in my life and faith "moments".

After last Sunday service in church, a dear lady excitedly came to me and said she must share something with me. She sat behind my daughter M and 2 year old grandson Thadd. Thadd was asking mum if we (the congregation) could sing the hymn - Holy, Holy, Holy. In our brethren church, any member can stand up to request a hymn, read a passage of Scripture or pray a prayer. 
So Thadd wants to sing Holy, Holy, Holy - a hymn he learned since mummy and him, started BSF ( Bible Study Fellowship International)  beginning of this year. Mummy told Thadd that someone will have to stand up and ask for this hymn to be sung. 
Praise be to God, the next moment, church member R, sitting in the main sanctuary stood up and requested for this hymn! ( M and Thadd were sitting outside, in the annexe, their whispering are out of his earshot!)
I am sure Thadd must be a most happy child, our dear Lord granted the desire of his heart! 
I hope, one day when Thadd is able to read - from this blog entry, he will know God heard him, answered him and blessed him. 

This dear lady who sat behind Thadd, was so amazed at how good our Lord is. She had to bless my heart too! 

Hymn
Holy, holy, holy!  Lord God Almighty! Early in the morning our song shall rise to thee.
Holy, holy, holy!  Merciful and mighty,
God in three Persons, blessed Trinity!

Holy, holy, holy!  All the saints adore thee,
Casting down their golden crowns around the glassy sea;
Cherubim and seraphim falling down before thee,
Which wert, and art, and evermore shalt be.

Holy, holy, holy!  Though the darkness hide thee,
Though the eye of sinful man thy glory may not see,
Only thou art holy; there is none beside thee,
Perfect in power, in love and purity.

Holy, holy, holy!  Lord God Almighty! All thy works shall praise thy name, in earth and sky and sea.
Holy, holy, holy!  Merciful and mighty,
God in three persons, blessed Trinity.

Burst of energy

I thank God for dexa.... I just had a pulse of 20mg dex since Thursday for 3 days and I have 60mg coursing through my veins right now and I am super-charged! What a burst of energy!! 
I can imagine many of my fellow MM-ers gasping in shock - hold it! wait a minute, are you mad - thank God for dexa! Nobody likes dex! 
Ok I admit, the down days and other horrid effects of dex, do not warrant thankfulness! I too had to beg my doc to stop dex after almost 9 months. But only for a short abstinence of 2 months, now I am back for another pulse. Nevertheless...

Why am I thankful - tonight I was out celebrating the birthday of a very dear friend! And because of the dex, I totally enjoyed the dinner celebration. I was alert, I could enjoy the food, I could talk, almost ceaselessly. It may seem all too surreal. But for those few hours, I was beyond happy. So why should I not be thankful! 

This dear friend of mine is a most wonderful and kind lady. I am so glad to dedicate "this burst of energy" to her! 
You may accrue this blog entry to the "hyped up" mental state caused by the dex!!!! Writing at 2.13am!!! 

"Give thanks in all circumstances" 1 Thessalonians 5:18

Gladdens my heart

B with feeding tube carried in a pack on his back

B laying sand on walkways

The two photos of my brother-in-law, B working at his garden, carrying sand to fill and level the bricked walkways, truly gladdens my heart.
Since the end of last year, he had difficulty swallowing. His esophagus narrowed, his stomach was removed to form the esophagus when cancer required it to be excised.
Now he has a tube inserted through his nose to the stomach for hydration and food, 24/7. I am sure in the beginning it must have been difficult and a challenge to get use to this kind of feeding. But knowing B, full of courage and perseverance, he adjusted to this "new normal". He is not the kind to gripe, whine or complain when he sees his family eating at the table, while he sits on his lounger. No, this man is strong in spirit! He has determination! He has put on 7 kg!
Praise the Lord!

Looking at these two photos, fills my heart with joy and gladness.
Really, cancer cannot rob us of life! We have many brilliant doctors and nurses who can help us to manage the cancer and live with it. Be thankful, never give up hope.
Let's live each day joyfully; bless and speak kindly to our loved ones and people we meet. Give cheer.
When we bring joy and gladness to others, we are living purposefully and it is pleasing to our Lord!

Thank you, B! You are an inspiration to me!

Psalm 115:16-18
"The highest heavens belong to the LORD but the earth He has given to mankind. It is not the dead who praise the LORD, those who go down to the place of silence; it is we who extol the LORD, both now and forevermore. Praise the LORD."

Live and do not choose death.

Psalm 118:15-21
"Shouts of joy and victory resound in the tents of the righteous: “The LORD’s right hand has done mighty things! The LORD’s right hand is lifted high; the LORD’s right hand has done mighty things!” 
I will not die but live, and will proclaim what the LORD has done. 
The LORD has chastened me severely, but He has not given me over to death. 
Open for me the gates of the righteous; I will enter and give thanks to the LORD. This is the gate of the LORD through which the righteous may enter. I will give You thanks, for You answered me; You have become my salvation."

One day our LORD will call us home, until then, live and enter the gates of the righteous with thanksgiving!

Palliative care

We just learned that our friends' brother, a young man with young children has gone into hospital for pain management and now they have put him under palliative care. This does not sound good. He has pancreatic cancer. The doctors' prognosis was 6 months and he has passed a year. 
We saw and witnessed a friend who was in palliative care for just over a month in Jan last year. A person goes under palliative care when the body system is in constant pain and the organs start to malfunction or stop working... it literally shuts down. The doctors won't let the patients have food, maybe just a little liquid. P said it's almost like starving to death... but that's the way when the digestive system could not process the intake. Also not to prolong the agony, feeding the cancer and not nourishing the body. I thought it was heartless to withhold food when the person is hungry. 
I really wonder if he knew this is what's in store when he checked in for pain management and instead the doctors are putting him under palliative care! the last I saw him, he still look strong. 

I also think that if it is at all possible to have palliative care in a home set -up. If it takes about a month or there about for the body to slowly shut down, won't it be better to die at home. We really cannot stop the deterioration of the physical body. The question is how to get to the final end in a quiet and peaceful surrounding with your loved ones. 

Exciting yarns

Two days ago I received another boxful of exciting yarns which I ordered online. The two main yarn stores Spotlight and Golden Dragon does not carry the brand and color that I want from the knitting books ( I received at Christmas). From the online stores many brands are readily available. 
I completed knitting some bags from the batch I ordered in October. I have to felt them so the final look is not quite there.  No photos yet. And with this box just in, I could not resist starting another piece of work while another is still in progress! I always wondered how anyone can have several works going on at same time? 
I received 2 knitting books -  baby knits and another of summer collection. I have knitted 2 baby sweaters and now I just started a light knit from the summer collection. 
I placed another online order from UK supplier for a lovely fine yarn ( the shipping charges are lower than from US). It takes about 10-14 days delivery from US. Hopefully when it comes in I should finish knitting this summer skirt, it's for A, she gave the book to me. 
I really, really like these yarns with such exciting colours and textures!

medical update

There will be some tweaking to the monthly treatment protocol, not in a big way, thankfully. After stopping dexa, it took me almost a month to recover from its effects. For the whole of April, velcade was increased to weekly from fortnightly and even tried sub-cutaneous twice. However it seems that even weekly velcade did not do much good... without dexa. After half an hour of discussion and looking at the chart from May 2010, a reasonably good dose of dex and revlimid may help to work on the m-band. Actually two weeks ago, Dr T did suggest dropping velcade and proposed a massive pulse of dex - 40mg for 4 days in a week! hold it, that may come with hallucination, yikes! I negotiated for weekly velcade instead but as the numbers tell us, the doc was right . So it will be back to good old dex..... I really dislike the bloated feeling and looking "round".. but anyway I will have a few good days with energy and a few bad days. It may not be too bad, considering that lately since January, my energy level had dropped quite a bit. 20mg of dex will certainly give me the adrenaline to be superwoman for a few days a week.  Ah... more importantly, I need it to bring down the m-band!
I will also need to get back on Vidaza, some time in June.
Nothing much new, thankfully. Trusting the LORD. all the way.
Psalm 34:15 "The eyes of the LORD are on those who fear Him, on those whose hope is in His unfailing love...."

	17/1/11	14/2/11	18/3/11	13/4/11	18/5/11
	cycle 5	cycle 6	cycle 7	cycle 8	cycle 9
M-band g/L	4.31	4.26	3.79	4.63	5.2
IgG (6.5-16)	9.78	9.61	9.51	9.86	11.6
IgA (0-7-3.8)	0.93	0.97	0.87	0.87	1.26
IgM (0.15–2.59)	0.48	0.46	0.29	0.53	0.49
B2M 607-2454	1398	1601	1574	1369	1561
Album (37 – 51)	39	39	38	41	40
WBC (4 – 11)	2.73	3.34	3.98	3.64	2.95
ANC Neutr	1.34	1.503	2.63	1.31	1.56
RBC (3.8 – 5.4)	4.17	4.7	4.48	4.5	4.46
HGB (11.5 -16)	12.7	14.0	13.6	13.7	13.9
PLT 140 – 460	182	169	192	161	162
ALP Heat Stable	44	28	50	40	45
AST/SGOT (0-40)		58	43	29	33
ALT/SGPT (3-40)		105	84	53	45
			121108	191009	181010
BMD-hip			T -0.3 Z 0.7	T – 0.1 Z 0.8	T -0.3 Z  0.6
BMD-lumbar			T -0.6 Z 0.5	T 0.0 Z 0.9	T 0.0 Z 1.0
		2007	2008	2008	2010
Plasma cell		44%	4%	3-5%	4-6%
Cellularity		80%	60-80%	60-80%	40%
Red cells			20%	20%	normal
Myeloid		normal	~10%	~10%	<5%
Platelets		normal	~50%	~10%	~10%

PS. We managed to retrieve the slide of the first bone marrow aspirate and had Dr T review it, he reported that MDS was apparent from the very beginning, the plasma cells were highly dysplastic. Knowing this, he could have started treating MDS much earlier with Vidaza. Anyway the last BMA in 2010 had shown much improvement after 5 cycles of Vidaza.