Daratumumab

 

It was a matter of time. I have been drug-free for a relatively long time. Last year when I was started on Pomalidomde and Cytoxan, both orally, it did significntly brought down the m-band. However this was interrupted by a tooth infection in the root my left tooth. I have wondered whether the monthly zometa  (bisphospanate) unbalanced the root, which already has a fine crack and possibly, the light oral regime did reduce my immunity, hence prone to infection. 

All that meant a hold from myeloma drugs, it is now a year past and the band had crept up. Although both mband and light chain numbers are moving in the same direction and very gradually, it is rather unsettling. To act or not to act. A low tumour burden may mean a easier and lighter regime. Together with Prof Chng, we agreed to embark on a single agent, monoclonal antibody, Daratumumab. This drug is new to me but it has been in the myeloma scene in the last 10 years and have shown effective response. A lighter regime means, I will get the injection every fortnight for 3 months. The usual protocol is weekly for 2 months, fortnightly another 2 months and then once a month. 

My first injection was done on 18th July. it was administered with pre-med and I was observed for 6 hours after that. Thankfully there was no severe reaction. Rather minor side effects were felt through the first week - backaches (rate 1-2 level of discomfort), feeling of nausea, some gastro-intestinal rumblings, fatigue by the afternoons and sleepiness, even in the mornings and sense of breathlessness. On the whole, these are tolerable. By the following week, the effects eased off and normalised. Knowing what is happening, will help me to adjust and get sufficient time to rest whenever needed.There was one occasion of severe gastro problem. I have been extremely careful with outside food consumption; been reminded no chicken rice and roasted meats left hanging, no chilli sauces kept out or any kind of half cooked food and definitely none raw. Still, one afternoon's lunch of fried rice and satay with peanut sauce, caused much pain and bloating and diarrhoea. Thankfully, 6 charcoal pills absorbed the toxin. 

I am trying my best to keep well throughout this 3 months, so that  there will not be any interruption and to allow an effective control of myeloma. Prayers are needed. Our Lord, Jehovah Rapha is our Healer; for from the beginning in 2007, He has restored and renewed. He will walk with me through this. Amen

Praise the Lord for rhema moments

The recent troubles since the start of myeloma treatment seems to come one after another. They can take a toil on my physical well-being; the sleepless nights, or frequently interrupted sleep meant that in day, there is little energy for much else.

Yet there are blessings of more "rhema moments" which remind me again and again God's goodness, the assurance of His presence, He is El Roi, He sees me in my plight.. 

I had shared with several friends and in particular friend, C, at the earlier months of April and May, that the word of GOD, impressed on me to Wait and Remember. C's excited and immediate response was, "I have a book for you". And then she was away for quite a long stretch of time. 

The rhema moment came when she gave me a nicely wrapped book at the right time. 

It is titled "A Sheep Remembers". Why is it a rhema moment? It is because the book was given to me on the Sunday 20 July, when I was enduring a painful infection of the root canal of my molar. The day before, both my dental surgeon and my endodontist have firmly diagnosed the need for an extraction. I was thoroughly nervous about extraction as I had 4 months doses of Zometa, a bisphosphonate which may cause complications. Paul and I were quite troubled by the possible risks. Hence the providential provision of this book, so timely, refocused my mind and heart to Wait and Remember. 

Two days later on 22 July, I went to NUH Oral Department and the extraction was done, which Paul witnessed and said he was traumatised. Unfortunately the molar has fine fractures and it broke during the extraction which required incision and removal of bits and pieces.

Indeed while we encounter various difficult and trying situations in our lives, and we are caught up with our fears and worries, be assured that God is present and is very near us. 

Next day on 23 July, I received a WhatsApp from AWC who reminded me the Sunday sermon "is a strong reminder of our Lord's sovereignty in each one of our lives.. every detail planned for His purpose and glory... Remember what you say about compiling all the "rhema" words for the next generation?, we all "have a story to tell" Psalm 71:18.   

Yes, we must endeavour earnestly to speak of God's gracious ways with us, how He gently prompts us to remember Him; and most wonderful is that Psalm 25:7 "according to your love remember me, for you, Lord, are good." 

It is these rhema moments that He ordained and planned, He tells us He remembers us and our troubles. We need to speak it to our next generation to testify of His grace; that when all are said and done, these are for His glory alone.  

Pain is debilitating

I thought I had an easy start to this new chapter of myeloma relapse. In fact my earlier posts got me all ready and set to go. With the rhema word (15 April) from the Lord to boldly and bravely face what is to come. The Lord was marvellously gracious to almost instantly within 1 month brought the m-band down to 1.5g/L; that gave a boost to my confidence. Those two words "Wait" and "Remember" sailed my boat. Little did I know nor was prepared for the onslaught of "little troubles" one after another. 

I felt those troubles must not be dramatised in view of many I know who are in serious and life-threatening troubles. Don't give air to manageable discomforts; which almost every cancer patients would have to endure. Having experienced them years ago, I should be able to handle them. It wasn't so easy, I am 18 years older and my physical body isn't the same. It did cause me and Paul much distress; we needed to reach out to Prof C, consulted family Dr for immediate respite, contacted friendly and helpful Advance Nurse Practitioners for advice. We were at a loss. Thankfully, over two weeks the issue resolved. 

Then there was an incident caused by new medications that affected intestinal control. All these make me realise that trips out of home may be curtailed and need a bit more planning. I am not as free as before and need to pre-empt exigencies.

The worst must have been last Friday. I had a severe toothache at a molar with root canal done in 2022. The pain was debilitating. Thankfully, I was able to get a consult with my regular dental  surgeon and immediately we called for appointment with the endodontist who performed the suspected root canal work. With X-ray and clinical assessment, he concluded the tooth must be extracted. It could not be saved as re-infection is most likely to happen again. 

As a myeloma patient, dental issues are our worst fears. We have read much and been repeatedly warned of ONJ (I just can't spell it outright, mental block). We are supposed to clear all dental works. An extraction has added risks for myeloma patients and in my case, I recently started with 4 month infusions of zometa, a bisphosphanate. The last infusion 2 weeks ago. It was a nightmarish decision that I had to make.On Tuesday afternoon, the oral surgeon at NUH explained step by step what he needed do. I said, "Yes".

We trusted God. We prayed and shared with a few friends and family for prayers.

It took the Dr tremendous strength to extract it; the tooth broke and parts had to be delicately removed as well as some incisions to the gums. Paul told me upon reaching home, he was traumatised as he observed the entire procedure of over 45 min. With pain medications, I managed to get through the next few nights, nervously worrying about the healing. Casting all cares and worries to the Lord, we must count our blessings through this episode. I shall do in the next posting. I call some of them, rhema moments.

Pain steals our composure. I could not function fully, my mind was in distress and my body physically drained as sleep in the night was interrupted. Today, I woke up feeling more able as the pain is reduced. I could attend a zoom meeting and write this blog. Thank God!

little troubles

I have been prescribed a low dose combination of Pomalyst 2mg, 300mg Cytoxan and 20mg Dexa, which has been reduced to 12mg after the 3rd cycle, each cycle being 4weeks. The rest of 1 week within the 4 allows for the body to recover and hopefully for the blood count to remain normal. 

I am so very thankful to the Lord for the excellent results of the 1st and 2nd cycles, m-band dropped significantly. Thankful to Prof C for proposing a low dose treatment protocol that is effective. I'll have to complete 6 cycles of this and praying that the results remain good. 

Over the months, as one goes through one cycle onto the next, the toxicity to the body increases. Knowing what these side effects are, I try to manage them. I have switched from taking Pomalyst in the morning to the night, as taking in the morning, meant a sense of sleepiness and brain fog throughout the day. Paul reminded that Pomalyst, a 3rd generation Thalidomide, its original purpose in the early days, was used to help pregnant women to sleep. 

After I switched from morning to night, I experienced an extremely bad bout of constipation and had to SOS help from my Dr, as well as GP. Secondarily, it exacerbated an old-time problem of haemorrhoids. That is double troubles over 2 weeks. Now I have to carefully manage my gastrointestinal system with 2 additional medications. Must be thankful that such side effects can be resolved and managed. 

Nevertheless this is the reality of being on any cancer treatment, even a lose dose regiment can give "little troubles". I see these as minor compared to serious side effects of high dose treatment which causes high raging fever - cytokine release syndrome. In immunology, CRS is a form of systemic inflammatory response to immunotherapy drugs, more aggressively than it should; symptoms of fever, nausea, fatigue and body aches. Recently, a dear sister had an ulcer in her stomach that caused contents to leak out to the peritoneum cavity, requiring emergency surgery. That is "big troubles". 

I recalled an occasion, 18 years ago, while hospitalised, I experienced severe stomach pains in the middle of the night, the haematologist Dr had to call for a gastrointestinal Dr to attend to me. Some of the dangers of these immunotherpy and chemotherapy include intestinal blockages etc. Thankfully the medical care in Singapore is excellent and our Drs are experienced and are alert of signs of pains and complications. 

I don't take for granted that I have gone through this before and more experienced; this second time round, I will definitely still exercise care and be in tune to the effects on my body; respond timely and seek help from the Drs and nurses when needed. 

I'm on my 4th cycle. By God's grace to complete the remaining cycles, uneventfully. 

It's Amazing!

While sitting here tonight to update the blog with the past weeks' happenings, I turned on the HealthHub to have a look at the latest bloodtest results. My Doctor always tell me to look at the trends, don't react to a single result; if it's bad don't be too worried unless it is an upward trend; likewise if it is good, don't be too buoyant, look for a downward trend! Unlike the stock market, we don't like ups, we prefer downs. 

So yes, this is a single result but I too happy not to post! So many people have been praying for me when they heard of my relapse. I must share this joy. 

In just 1 cycle of pomalidomide, cyclophosphamide and dexamethasone, my m-band dropped from 5.4 to 1.5, this is amazing! Thank God for His compassion and lovingkindness, Psalm 27

 

 

Look at the trends since 2024, that gradual increase and the significant drop in just one cycle. Of course, I will have to see the Dr. at the next appointment on 20 June to understand how he interprets the result. In the meantime I'll stay happy and thankful. 

Restored & Revived: the book and a rhema moment.

Being in the Myeloma Support is a truly a satisfying and humbling experience. The interaction in this WhatsApp group shows how much we need one another who are walking the same journey. Recently someone in the group mentioned about the book Restored & Revived that I wrote and published in 2021 and I distributed most of it in 2021 and a couple in 2022.

Several in the Support Group wanted a copy, which I gladly replied affirmatively. To some, I explained it is about my personal experience and how I found strength; that it was not about how I cope with myeloma, and not the practical dos and don'ts. So 14 books were packed in bubble-wrapped envelopes and sent off. I wasn't sure how and whether reading would bring comfort or encouragement but I pray that the Holy Spirit will do His work in the heart of the recipients, in whatever way. Through that week, I had doubtful thoughts until on Sunday, the encouragement came from the Speaker of our morning worship. He received a copy of the book in 2022 and in passing said to Paul, it is a good testimony. Surely the Lord knew my heart and unease; He sent a rhema moment to buffer me up. Even in something so inconsequential, can I not see how much the Lord loves me, knowing that I am in need of encouragement. There are humongous troubles in the world, people are dying, persecuted, earthquakes, disasters of great proportions. Yet God has time to consider me. Who am I to receive a rhema moment? Indeed a  beloved child of God. Amen

A day after, I got this comment from one of the recipients - "Nice read. Such a wonderful compilation of prose, poetry & gospels, brings so much solace." It surely puts a big smile on my face. I am thankful for the kind words, it lifted me up. We all seek affirmation. But the greatest joy is to see how God orders the turns in my way. Even this small episode gives great confidence for the days ahead in my re-new myeloma journey. 

deja vu

deja vu - a feeling of having already experienced the same situation

Indeed with steroid, dexamethasone, one will surely have the explicable highs and lows. Just one cycle, I already know what to expect, how good days and the bad days turn out. A bad day has a general sense of malaise, denseness from the head to the chest and blocked hearing mostly on the left. Best to stay quiet and keep away from people. 

The good day shows itself in doing the unusual, deja vu indeed. This time round, I pulled out all the pants and caftans that are way to too long and stayed in the wardrobe, almost forgotten. Pieces by pieces, I measured, cut off excess and sewed up the hems. I spent from early morning to afternoon doing it. Ironed up and hung them. Indeed a steroid high can be beneficial and productive. 

18 years ago, one of my highs, was to clear up the storeroom, took out all the stuffs, disposed unwanted ones, dusted and replaced all back. I felt like superwoman!

This time round, I insisted to clear up the bedroom downstairs which has turned into a storage for unwanted, unusable items, some rather big and require proper disposal. A moving truck was arranged to collect still-working coffee-maker, stand-up keyboard, water jet, a heavy Bang  Olufsen TV, stylish B&O 5-CD player, children toy cars and a baby car seat. 

I am certainly more able to manage my steroid highs and lows, knowing what is causing it; rather than simply cast them as uncontrollable mood swings. It is really unreasonable when seen by others that we are not able to curtail our strange behaviour. Sympathy is what we need. But when you are able to manage these situations, you can feel a sense of satisfaction. 

a season of psalms

I'm rather late in posting this, I have been ruminating on the several things to share. Let's get on with it one by one.

I'm not sure how to describe this phenomenon. My Tuesday Bible Study commenced many years ago, started from Genesis and we have faithfully plodded till now, just completed the book of Job and launching into a selection of Psalms. 

As the same time, I also attend Precepts Bible Study with a smaller group of ladies. Guess what - we are also covering Psalms 1- 41 since February for a half year. 

And believe it or not, my church BKC is also covering Psalms for the this quarter! What a blessed flood of psalmic praise, thanksgivings; laments and pleas; wisdom and confidence in our Almighty.  

I'm sure this season of studying Psalms is most timely and is specially for me to be ready for whatever may be ahead. 

Psalm 25: 

WAIT and REMEMBER

Psalm 26: 

That I may proclaim with a voice of thanksgiving and declare your wonders.

My foot stands on a level place; In the congregations I shall bless the Lord.

Psalm 27: 

One thing I have asked of the Lord, that I shall seek: That I may dwell in the house of the Lord all the days of my life, To behold the beauty of the Lord and to meditate in His temple.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. 

WAIT for the Lord; Be strong and let your heart take courage; Yes, WAIT for the Lord.

Psalm31:

My times are in your hand.

Psalm 39: 

Lord, make me to know my end and what is the extent of my days; Let me know how transient I am.

Psalm 40:

I WAITED patiently for the Lord; He put a new song in my mouth, a song of praise to our God.

(Precepts notes;)

Psalms is theology sung. It's a collection of poetry - prayer, praises or songs, each with a message. Hebrew poetry emphasises rhyme and meter, the most important element is parallelism, to repeat a thought in other words, or add new information to an original concept. 

A third element is contrasts of ideas, showing how different and a fourth type uses analogies, likening one thing to another.

Understanding these techniques help to bring a greater appreciation of psalms to me. It's not just repetitive, it heightens one's delight of the message, the song crescends to an apex of praise to a truly awesome Almighty. 

So yes, I'm enjoying the study pf psalms.

a Rhema word

I am thankful for a Rhema word that prepared me for the start of this new phase. 

The week I received news of the m-band from the NUH app, and this same week 1st April, I was preparing for the study of Precepts Bible Study on Psalms 23-27. It was timely and pointedly applicable. From these 5 psalms, it was the reflection from psalm 25 and psalm 27 that specially ministered to me. Reading the NASB version, two words came strongly at me. 

Wait....Remember

v3 none of those who wait for You will be ashamed...for You I wait all the day

v6-7 I Remember, O Lord, Your compassion and Your lovingkindnesses, for they have been from of old... According to Your lovingkindness remember me. 

How powerful are those 2 words to me, my reflections were upon them. This is what the Holy Spirit is speaking the Rhema, living word of God at this time of my life in preparation for what is to come. 

To wait in NIV version is hope. In Hebrew "qawa" is to look forward, look eagerly, expect, linger.

I am reminded that I should wait patiently and have my hope in the Lord as He is in control of my life. To have the word spoken at such a time like this means only one thing, our Lord sees me - El Roi, Genesis 16:13, the God who sees. He knows exactly my situation.

Remember from of old...it has been 18 years with myeloma and together with many of my family and friends, we have witnessed the compassion and lovingkindness of God in sustaining me all through these years.  He has Restored and Revived me (book 2021)

Therefore I am confident He will do the same. I just have to Wait and Remember.

Further joy was found as I read on Psalm 26 and 27; thus as David wrote this song, I have paraphrased it this way.

This is my song...

The Lord is the defense of my life,

My heart will not fear.

though a host, a war, my enemies (myeloma) arise against me,

I shall be confident.

"One thing I ask from the Lord,

this only do I seek:

that I may dwell in the house of the Lord 

all the days of my life,

to gaze on the beauty of the Lord

and to seek Him in His temple."

In the days of trouble,

He will conceal and hide me.

He will lift me up on a rock....

"From the ends of the earth I call to you,

I call as my heart grows faint;

lead me to the rock that is higher than I." Psalm 61:2

[This verse in Psalm 61:2 was frequently prayed by Paul 

over me in the early days]

The Lord will lead me in a level path,

"My foot stands on a level place; 

In the congregations I shall bless the Lord." Psalm 26:12

I would have despaired unless I had believed that 

I would see the goodness of the Lord in the land of the living.

"Surely goodness and mercy will follow me all the days of my life." Psalm 23:6

[song "The Goodness of God]

Wait for the Lord

Be strong and let my heart take courage;

Yes, wait for the Lord.

Be ready

It has been since November 2023, I last wrote in the blog that m-band has resurfaced. Indeed it has been creeping slowly the whole of 2024 but from January to April 2025, the increase is significant, m-band is now at 5.4g/L. Likewise the light chains, both Kappa and Lambda have increased, though the ratio remains in normal range; but for as long as I can remember, my light chains absolutes have never been abnormal. This is rather puzzling. 

Starting January 2025, I was prescribed Pomalidomde 2mg, 3 weeks on and 1 week off. By March, the marker still went up; additional meds were added Cyclophosphamide 300mg 3 weekly and Dexamethazone 20mg 4-weekly. Monthly infusion of Zometa was started to minimise the osteoclast action on the bones. Hopefully this gentler regime will work to bring the number  down. 

In the meantime we have cancelled the Precepts Study tour to Turkey which has an intensive coverage of Apostle Paul's missionary journeys as well as visit to the seven churches in the book of Revelation.  Such a tour would not be suitable at this time. travelling in a bus load of 45 persons as well as moving in and out of numerous hotels with two nights or one night stay could be exhausting. Daily excursions to the sights requiring extensive walking would be rather demanding on the body. It is expected with the new regime, there are the usual side effects which may require easy and expeditious access to toilets. 

We are still hopeful to make a shorter trip from 15 May on a cruise which should be more manageable. We realised from long ago to be ready for exigencies and to hold lightly in our hands whatever plans we have made. 

Cycling Buddies

Since the Walk & Cycle event in 2015, I have been cycling with a small group, mostly on Mondays. From short rounds within parks to long distance on park connectors, around Marina Bay, Seletar - Rower's Bay, Punggol Waterways to Pasir Ris Park.15km is my max. It has been quite an adventure for me. From a weakly and frequently tired myeloma patient (2007 to 2015) to almost fully strengthened (2016 to 2024, totally drug free, no maintenance, MRD). 

Remembering and recounting these memories bring much delight to my soul. 

We love it especially when the grandchildren ride with us

We love to take extraordinary pose - sitting on this huge chair at the Bay

all 6 grandchildren can ride

Nat and Matt are hardy boys as well as great gymnasts

a family picnic includes biking

Paul and I rode in Okayama

Electric bikes help with inclines

Our regular Monday cycling buddies

at Pasir Ris Park 

at F1 racing track

Kids love to ride through the water spouts

There is always makan

 

a Day of blessings

11 November 2024, a day to remember, it was a blessed privilege to see five of our grandchildren baptised at Bethesda Katong Church. The church I grew up in, got married and worshiped for 55 years. The event was filled to the brim with the largest turnout of 17 baptism candidates, family members and friends. Praise the LORD.

17 baptism candidates

A blessed day for the Shi family

Thad with his Navigators friends

Nat and Matt with their gym friends

Little Andrew is all ready to respond loud and clear

The baptising pool at front of the Sanctuary

Baba baptising Thaddaeus

Anna is so happy to receive her own Bible and the verse given by Baba

Grandchildren with paternal grandparents and grandaunts

Walk & Cycle 2024 May

This write-up is late but it still must be remembered in this blog. 

It was a FUN-filled day!
The Walk & Cycle 2024 May was held at Jurong Lake Garden, a sprawling oasis of greenery and waters. There were 90 participants consisting of myeloma patients, caregivers, family and friends. There were 66 walkers and 24 cyclists. We raised a total of S$10,619 for LLF. 

Most did the Rasau walk guided by knowledgeable NParks officers. About 20, including myself cycled the north and south routes within JLQ. At the Walk & Cycle 2015 May, I could barely walked 300m along the promenade of Garden at the Bays. Over the years, my physical health improved wonderfully. 

We ended with refreshments at Mempat Hall, an air-conditioned respite from the sweltering humidity of the Gardens.Our 3 most senior Haematologists from NCIS Prof Chng Wee Joo, NCCS Dr. Chandramouli and Mt. E Dr. Daryl, supported the event from the early morning of 8am till 11am; despite their busy schedules. To them, it was important to show they care and support an active physical and emotional well-being of the myeloma community. Doctors and patients mostly relate only at the clinics/hospitals.

We were honoured by the visit of Minister Desmond Lee and ex-Minister Khaw Boon Wan (who was the guest of honour in the 2015 event). Not to forget our dear friend, Han Jok Kwang who helped organised 2015 and this one.

We thank God for giving us good weather and the kind generosity of NParks.

 all participants

Those who cycled the north and south routes

Those who did the Rasau Walk

Prof Chng, Drs Chandramouli, Daryl Tan, APNs and SGMyeloma Core team

Our guests of honour Ministers Desmond Lee and Khaw Boon Wan

NParks provided buggies to bring patients from MRT

                                                                  

Prof Chng recounted 2025 event

welcome address

our youngest grandchildren came along for the walk - Andrew, Anna and Isabel

I'm Back

The long absence meant... I have been well. 
Since the last post in 2015, I have achieved MRD-, Minimum Residual Disease, no myeloma cells to the 10 million count. It was done January 2018 and thankfully, I could stop all medications 6 months later. 

Now, why am I back, It only means one thing...

A faint band was seen in July this year. Waited and further bloodtests in August and October showed a small increase to 1.4g/L

I am rather disappointed but not distressed.

Since 2015, there have been many new myeloma drugs which are effectively controlling the disease. Still, no-one would say there's a cure. However, I'm optimistic with new treatment protocols. Prof Chng said I could be in MGUS state, also I have increased in age hence the re-emergence, and it is not necessarily worrisome. An elderly person can survive with a low number without need for intervention. 

It could be possible that the Covid vaccinations and a bout of not-serious Covid infection end of March this year, have triggered my immune system to show 2 spikes. Nobody knows. Though I have read from IMF myeloma minutes or Dr. Durie's blog that some myeloma patients have re-emerged from remission in greater numbers since Covid... 

Our immune systems are rather fragile and sensitive to environmental changes and intrusions. What can we say, except to bite our lips, tough it out and move on to fight another battle with myeloma!

SG50 Walk or Cycle Myeloma Charity

It took 2 months of preparation and with the help of a dear friend, we were able to organise a Walk or Cycle for Myeloma Charity. The intent was to gather myeloma survivors to have a morning walk around the Marina Bay, enjoy the fresh air and have a sense of camaraderie. It is a celebration of life with friends who have walked with us, cheered us on and still are, in our journeys. Just as Singapore celebrates 50 years of nationhood, myeloma survivors too celebrate in our own special way. We were enthusiastically supported by 58 cyclists and 150 walkers. The weather was fine throughout. The walk was 3-4km, most returned within an hour, the cycle was about 10km and all returned safely.

We are able to raise S$420,000 for NCIS - National University Cancer Institute of Singapore, specifically for myeloma research. We are very pleased with the result. We hope that our doctors and clinical researchers will increase their efforts and focus in finding new and different pathways of treatment considering the genome and unique make-up of the Asian patients.

Within the short 2.5min speech I made, I quoted Theodore Roosevelt
"Far better is it to dare mighty things, to win glorious triumphs, even though checkered by failure... than to rank with those poor spirits who neither enjoy much nor suffer much, because they live in a gray twilight that knows not victory nor defeat."

As myeloma survivors, we will not live in gray twilight, inasmuch as we suffered in our illness, we will live our days to the fullest. We seek to live meaningful lives and contribute to family and society.

All ready to walk

Walker and Cyclists support Myeloma Charity 2015

Walkers flagged-off

Cyclists headed off the opposite direction

Event took place around the scenic Marina Bay 

sadness and sorrow

How grievous when a dear friend passed on. The sadness and sorrow cannot be described. The empty spot she left in my heart is like a vacuum that cannot be filled. Just thinking of my dear friend Winnie, brings on quiet tears. She was always caring for me, praying for me and making time to be with me. She rather sit by the beach and have a chat with me. We are alike in so many ways, preferring to bring a mat and have a picnic with a flask of coffee, just feast on nature's beauty and what it has to offer each day. There is no need to talk, the quiet silent fellowship sensing the same gratitude for life and for the moment's pleasure. The world's insurmountable and endless troubles bear no weight for the the time of private solace.

She left just too soon, even after several hospitalisations her pain grew worst and so severe, it was time but yet not, for those who cannot imagine it was to be the end. Too sudden. Mercifully, her suffering was short. However that brings little comfort to us when our loss is permanent.  Our consolation is that she is in a better place, in the arms of Jesus, where there is no more pain.

What then for her beloved M, life now is going to different, trying to live on, needs courage and strength of will. He has to find a new purpose, fill the days with useful activities and not allow it to be full of sorrow. Not like the first weeks, relentless anguish and uncontrollable emotions that overwhelmed unceasingly, sometimes even choked the senses. It is different now but a quiet grief.

O, my friend, I thank GOD for tears, it flows the sadness away.

Stable and thankful

Yesterday's visit to the doctor went well. M-band is stable at 1.5g/L (Sep 1.6, Jul 1.3). With such results for the second half of year 2014, it is reason to be thankful. This level is maintained with a regiment of pomalyst at 2mg and weekly dex at 12mg. I have been on this for 19 cycles and it is manageable with mild effects of insomnia for one night a week, blurry vision and some days of gastro-intestinal problems requiring me to meet nature calls expeditiously. These are really minor problems compared to what many other myeloma friends have. I am truly thankful to GOD for the days He has given me. I am living very well. My energy level is far better than when I was on Revlimid and my full blood count are within normal range. I have been travelling with friends, able to do what healthy people can do, touring places of interest and enjoying food. And of course having play time with our 3 adorable grandsons at 5, 3 and 1 year of age...and another on the way. Such blessings are overflowing into my life.

Amazingly, though dex has been called all sorts of "cursed" names, I have derived much benefits from it. Just recently, during a flu episode of 2 weeks when I was home bound and mostly resting in bed, with strong lozenges and lots of hot water and light porridge, I was able to complete a minor writing project. By the time I recovered, the writing of 12 prayer lists for 2015 was 100% done. and I was especially energised on the nights I could not sleep, I could read and write. Fantastic. It is truly by GOD's grace even during such a down time.

It is so funny when we chatted with a fellow myeloma patient, 85 year old, at the clinic yesterday. Recently diagnosed less than a year, he is still getting used to the effects of peripheral neuropathy, blur vision and insomnia. He was describing his dex highs as days when he feels like Albert Einstein! His voice resonates with power and he thinks simultaneously several issues. I told him I know how he feels and he is very glad that he is not alone on this strange emotional roller coaster. And of course, he experiences the unpleasantness of the adrenaline drop. He is still in a wheel-chair, he cannot walk for long, the neuropathy is affecting his feet too much. I advised him to inform his doctor. We hope to visit him in the coming week or two and to cheer him up.

flowers to dinner

We were happy to receive an invitation to dinner from a fellow mm-er. We brought along this bouquet of flowers. It is not often that we meet but this friendship that grew from our common malady has blossomed in a special way. TJ is almost 9 years and had several serious relapses and each time he recovered well enough to do what he feels passionate about. He may soon have to start treatment again and not looking forward to it (who would.)
Of course we talked about the medication his doctor is recommending for him and as it worked before it may again help to bring the numbers down. But he also recalled that he came down with pneumonia soon after. The combination of med brought down his immunity and landed him in ICU. This time his doctor assured him of lower dosage and cautioned him not to be out in crowded places during treatment.
However the interesting part of the night's conversation was really on his passions. He spends his time and resources on buying parcels of land in Philippines, Myanmar and Nepal. As a trained architect, he provides the technical expertise to build churches on the land. I am really amazed at his generosity and his desire to travel to these under-developed countries. He kept saying how he wish the doctor could delay the treatment and he would want to visit these countries overseeing some on-going projects and meet the workers there. His wife interjected and reminded him that he needs to get his priorities right, start treatment, get better and there will be another day to travel.
I really hope and pray that his treatment will get the myeloma under control and his acts of love can continue to bless many.

friends...gone

Last week, I was talking to a fellow mm-er on the phone and she was telling me she was feeling depressed since re-started on med and DEX! Has since stopped dex as it is making her miserable - anxiety and sleeplessness. Don't we all know. But all that happening with news that two from our mm support group have passed on! Sad. One of them we met often and talked. The last time we saw him, he was cheerful and recounted his battle with an episode of severe infection of "flesh-eating" bacteria which devoured a large part of his thigh. We thought he recovered well but probably the underlying myeloma has weakened his immune system badly. Just did not expect it to be so sudden. It is seeing them two months ago and now they are gone! So the friends we meet at the waiting area, we talk and share our lives and moments, treasure the memories, who knows if we will meet again at our next medical appointment.

Short visit - Stable

Just back from review with Dr C and the report is good, m-band is at 1.6g/L and the rest of full blood count are normal and within range. The doctor is happy that pomalyst at 2mg and a low weekly dex 12mg is keeping myeloma stable. I do not have significant side effects except blurry vision for which I am being monitored by eye doctor.
The 4 hours at the hospital today was pleasant as we met with fellow myeloma friends and chatted about how we are and who is on what drug protocol. One just 3 months after transplant and looking well, another just back from a cruise found m-band crept up but today's report showed a 10% reduction and he has been given the ok to motorbike up to Laos! Wow he is really adventurous and living life to the full... he is over 65, I think he said his grandson is 15! Another thing he shared was that he used to have low platelet around 50 (?) and someone suggested papaya leaves, he tried it au natural, tasted terrible, got it in capsule and takes one daily and now his platelet has gone up to over 100... Since I don't have low platelet, I didn't ask the details but thought I should just briefly share about it here.
My consult with Dr C was over quite quickly since there wasn't much to discuss. See him in 2 months' time.