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.

amazing 10 days and more

I just got back from a 10-day cruise and more. Amazing, because I was physically able to do everything as planned. With myeloma, one never knows what can happen pre hols and even during hols, especially going on a cruise with "hundreds" of passengers. Thankfully I remained well throughout even though two friends in our group of 12 were sick.
Even more thankful that I could participate in all the land tours we booked to do, some of them marked "easy" and as well as those "strenuous". I was not too sure of my ability but these tours sounded too interesting to miss. So, I gave it a go and marvellously, I managed to climbed up all the steps and walked many kilometres. I am so thankful. I am so happy. Of course, I paced myself and paused whenever I needed to.
Through this entire time, I was on medication (pomalyst 2mg 21days and dex 12mg weekly), this regiment seems to suit me fine and is not causing any adverse side effect. Notably I think it does not make me as tired then when I was on Revlimid.

cruising the Baltic sea

Here is a photo of cruising along the Baltic sea, it is really quite a calm inland sea and probably good for a first-time cruiser as there is no rough waves to unsettle the voyage. We visited Copenhagen, Helsinki, Warnemunde (E. Germany), St. Petersburg, Estonia and finally Stockholm.
Copenhagen - I remember Tivoli Gardens with its many amusement rides, mostly for the young; and the famous little mermaid statue by the shore.  St. Petersburg is stately, grand and beautiful with magnificent, impressive castles, cathedrals and palaces. Not to be missed is the Hermitage museum, it houses three million pieces of art, gold pieces and jewelry acquired by seven czars.  But it was crowded with people and with the hot summer heat, I was glad to be carrying a foldable fan. From the Estonian tour guide, we learnt of the painful 51 years of Soviet rule dominating their native language and culture. History comes alive when we visit the land and the people, we felt the emotions.

Alpine mountains

After the cruise, we had some time to spend in Austria and the stay at the Alpine mountains was therapeutically peaceful, very calm and quiet. Away from the busy cities, a sublime retreat can boost ones well-being, breathing in fresh clean air.

We really enjoyed doing the 48km Glossglockner drive, winding up to 2,570m is stunningly beautiful; making stops at various junctures to appreciate different views of the mountains, valleys and waterfalls. It is truly very uplifting to see such beauty up close, not just from pages of books or magazines, it is so different.  

Glossglockner drive

At the end of this trip, my thoughts are of how thankful I am that I can visit so many lovely places and remained in good health throughout. I am thankful to GOD for giving me the strength each and every day to experience these joys. I am thankful to all my friends and families who uplift me in prayers.

Happy with Pomalyst

I cannot wait to report on my latest m-band. It has gone down to 1.3g/L. This is the lowest ever in my 7 years of myeloma. I am very happy. I thank GOD. The pomalyst regiment of 2mg and weekly dexa of 12mg is working well for me. Two months ago m-band was at 2.9g/L (March's 2.6g/L, Jan's 2.3g/L). I am into my second year of pomalyst and dexa and except of the usual dexa side effects, poma at 2mg is well tolerated by my body. I did try it at 3mg for three months but it caused quite bad constipation, and thankfully, reducing the dose to 2mg did not affect its efficacy. With poma, my WBC is back to normal range of above 4 and ANC 2.3
I did succumbed to flu and was on augmentin 625mg for 10 days while still on poma and dex. I started to walk more frequently on the treadmill, just about half hour each time. If this is the reason for helping bring down  m-band then I am going to be consciously committing to getting on the treadmill regularly! Well, actually I was going on the treadmill to get my weight down before going on a cruise in two weeks time. I have been told that one can easily add on weight with the fabulous buffet spreads on cruise ships. Anyway with this medical update, I am really looking forward to enjoy ourselves with five couple friends.

myeloma to knitting

dinosaur sweater

I have been knitting for 7 years  now, it is really quite remarkable. For me, my myeloma is synonymous to knitting. My sister taught me to knit when I got back from hospital, 7 years ago. If I had not had myeloma, it is unlikely I would pick up the knitting needles or crochet hooks. Look at what I have achieved over these years - sweaters, beanies, scarves, gloves, bags and socks. At each level, I progressed, I felt tremendous satisfaction and achievement. Knitting my first scarf, I could not imagine knitting gloves or socks, they are just too complicated. Living in a perpetual hot climate, knitting is not a favorite nor necessary craft and I don't have many friends who knit. Nonetheless with much patience and perseverance, and "myeloma-enforced new normal" I am very glad to have mastered a useful and pleasant past-time. Really, I got something good out of this "dreaded" situation and many have benefited from my handiworks, I think. Well at least my 2 grandsons love the dinosaur sweaters I knitted.

 exquisite lace

I have to say that my greatest achievement to date is the completion of a lace. Lacework is most intricate and for a long time I hesitated, the yarn is so fine and I did not think my eyesight could take the various twist and turn, even counting the stitches would be a challenge to the "dex" brain.
But I did and I am happy! Lacework is beautiful.
This piece was done by crochet. Migrating from knitting to crocheting took a bit of nudging from fellow mm-er and knitter (feresaknit, who has sadly passed on). She encouraged me to try crocheting but I didn't see the reason to switch and wasn't keen to learn. Nonetheless, one day I just tried and presto... I can crochet too. It is not too difficult to learn. Now I enjoy both knitting and crocheting. What a joy this skill has given to me.

Today - 7 years

Today is 7 years from first diagnosis on 31 May 2007.
Ask me 7 years ago how would my life be, I could not imagine it to have turned out so well. The journey has its many ups and downs, the downs mostly in the early years and nowadays the various challenges are met with a more "experienced" attitude and "subdued" reaction.
So I am tremendously grateful (and thankful to GOD for grace and strength).
Thus I attended today's MM Support group for patients and caregivers, with much joy. It was an informal gathering for patients to chat and share experiences. As the turnout was small there was plenty of time for everyone to share and ask questions. There were 2 new patients, one just completed her autologous transplant and another just diagnosed in April and possibly be starting induction and preparing for transplant. Those who had gone through transplants (I have not) were eager to share their personal experiences. There was the assurance that we will be around to visit and help the new patient as she is from a neighbouring country and flew in for medical care; her husband may not be here all the time. It really gladdens my heart to see the camaraderie.

Thankful, most certainly, to have reasonably good seven years receiving excellent medical care, love and support from family and friends. Traveling whenever I can. Telling my story to those who are interested.
My outlook in life is to stay calm and not be too frazzled. Recently I came down with mycoplasma infection in March/April, it lasted over a month with antibiotic. I recovered mostly by staying at home, for that I am thankful there were no other complication, just some headaches.

Infections - skin/eyes

This is just to recount my recent experiences with little problems I have been encountering and probably may alert some of my fellow mm-ers to be on guard and watch out. Starting this year the problems with skin and eye became more frequent. I am 6 years with mm and on oral med 2mg pomalidomide and weekly 20mg dexa. I believe it is the long term usage of steroid that cause me to be more vulnerable to such infections. Question is that how can I avoid them, minimise its recurrence and what to do with the infections.

Eye infections:

So far the infections are quite small, the first one on the upper eyelid was easily treated by family doc, who pricked the whitish swelling, removed the pus and applied topical antibiotic. It cleared fully in few days. Another one some months later, also cleared with topical antibiotic without any need to prick it.

Now I have one small reddish lump on the lower lid (all these on the same eye), my dermatologist said its a chalazion (stye) but it does not appear infected. After several weeks of topical antibiotic, it looks less red and small, seems to be deeper then just on the follicle. I leaving it alone for time being.

Right now the eye doctor has recommended cleaning my eyelids regularly, with blephagel to prevent blepharitis - inflammation of eye lids. Having to use daily eyedrops - Xalatan and Trusopt - these leave crusts on the lids and hence it is necessary to do frequent cleaning to prevent infection.

I saw this youtube video on how to do simple cleaning at home but haven't tried it myself.

http://www.youtube.com/watch?v=qEsi5dYghlo&sns=e


We do need to take extra care and precaution over our eyes. We may be more prone to infection because of the medication we take but we should try to stop it from becoming a serious problem and do what is necessary to keep a high level of hygiene. 

Skin infections:

In June, I posted about a viral cyst on my lower lip, it had to be excised. Now I am fully fine.

I had another skin infection - furuncle - when a folliculitis become quite big, it is called a furuncle, if it gets worse, it is called a carbuncle! Sounds terrible!

The first visit to the dermatologist, I was given topical antibiotic and a course of oral antibiotic. After a week it did not help but became painful. At the second visit, the doctor lanced it and applied topical cream. Definitely it was the right thing to do. It's totally gone. 

I realised that even showering/bathing using srcubs, it should not be done too forcefully as it can injure the skin and it helps to use shower lotion with oil.

It seems I have been getting too many skin related problems this year - from March till now. No worries, as long I am attentive to the problems and not let little problem become big problem, it should be ok. 




Pomalyst cycle 2 - GOOD

Just completed 2nd cycle of Pomalyst 2mg and weekly dexa 20mg. And the result is good! M-band came down after 2 cycles from 5.2g/L to 3.7g/L. The doctor is pleased, so are we.

16 Apr 5.2g/L

24 Jun 4.8g/L

5 Aug 3.7g/L

The full blood count numbers are all within normal range. I don't feel excessively tired and fatigued which I get with Revlimid. With Revlimid, my wbc and neutrophils were affected. 

I feel sleepy quite early in the night for the 3 weeks but get to enjoy the rest week with reasonable energy level. On the whole there has been many positives with Pomalyst. I think starting at this low dose of 2mg is just right for me. The Dr is prepared to reduce dexa to 12mg.... I am very happy, my dear husband is more than happy. 20mg of dexa gives me two to three days of denseness in my head, hearing is also affected, heaviness in chest, blurry eyes... all the unpleasantness of dexa. Likely that with 12 mg, the effects could be minimised.

While I am glad for the good result, I know that as more cycles are added on, my body may feel differently. (Keep praying for good outcomes and call on GOD's grace - "my grace is sufficient for you, my strength is made perfect in your weakness" I don't deserve such goodness but as earthly fathers would want to do good and give their best to their children, I seek grace from our Heavenly Father).  Really we don't have to think too far ahead, just be very thankful that I have a good response at present.  

Last Bible Study session was on the study of Psalm 23 and my reflections after 6 years of mm is this:

- the LORD, He is my Shepherd. He has watched over me. He is still watching over me.

- He leads me beside quiet waters. He gives me peace. Shalom

- He restores my soul, He gives healing.

- I walk through the valley of the shadow of death, He is with me. I don't have to fear

- Surely goodness and mercy (love) will follow me all the days of my life. 

This last assurance of goodness coming after (chasing) me is indeed true. In the 6 years I have the blessing of seeing our two children happily married and most wonderfully blessed with 3 grandsons - 4 and 2 years and a 3 month old baby! I have been able to resume "new normal" activities which bring much joy. This is true goodness and mercy following me and I look to Psalm 23 for it to follow me the remaining days of my life - however long or short. 

So sudden...

It was so sudden, the pain came to my right hip. It had been achy and a bit uncomfortable but a pain to the level of 6 (0-10) was quite unexpected. I attributed this problem to getting in and out of the car....our car was at the workshop for a week and we had to use another. This change somehow is the cause of my distress. I wasn't really bothered by the little aches but I did not expect it to turn into pain - I have not felt such pain for a long time thus was quite taken aback. At least I needed some pain and anti-inflammatory meds. I had thought that would be sufficient but having notified Drs - I was advised to go see an orthopedic Dr and get an X-ray. Being on steroids for so long gives some risk to bone problems.  Thankfully I was able to get a next day appointment and in the meantime a dose of arcoxia 90mg helped to give me a restful night.

As I was due to do a Bone Density test, it was also done at same time as the X-ray.
The outcome of both is GOOD! No bone fracture, just strain on the joint. Why giving such pain? I didn't even ask, just glad that it was not a bone problem. I was given a muscle relaxant if needed. Strangely after one dose of arcoxia and one afternoon of pain, my hip felt quite fine - from 6 to 0. Sometimes there are no answers but just be thankful all turns out well. Especially thankful that Dr was swift to respond and med readily available through our family doctor who is 10 minutes drive away. Thank GOD!
The Bone Density test showed my spine T score at 0.4, Z score at 1.5 and hip T score at -0.3, Z score at 0.7 Both readings are in the normal range. My bones are sufficiently strong for my age. I left the orthopedic Dr clinic happier.
I was a little more careful as I walked out of the hospital, no sudden swing or jerk - went home to put my joints to rest.

A last minute trip

Just completed the 2nd cycle of pomalyst - 2mg and weekly dexa of 20mg, done my bloodtest and will be seeing doctor. I generally feel well and except for some minor "troubles" of skin infection, these have cleared. Those minor troubles were a bit of a bother and required me to see a dermatologist to lance a furuncle. On looking back, it was troubling that it took weeks to clear but it finally did. I guessed that my immune system may just need a little bit more time but thankfully it is working.

restoran Yap Hup Kee

Thus with a generally good sense of well-being we made a very last minute decision to drive up to KL. Hari Raya this year was around the weekend giving us a long weekend off. Most residents in KL would "balik kampung" meaning people are going home to the towns of birth and family. KL city itself would be very quiet. We started out our journey of 330km at dawn and the highway north was easy drive with lesser vehicles and as expected the city was devoid of its daily notorious traffic jams. We made the journey in good time arriving early, dropped off our luggage at the Majestic and we hopped into a taxi to go search for KL best Hakka Yong Tau Foo.

stuffed vegetables - soupy and crispy

chee cheong fun with crispy tiny shrimps

breakfast - Indian rota prata

Two years ago we read from a local blogger about KL's best food and we found Restoran Yap Hup Kee located at 45 Jalan Brunei Barat (junction of Jalan Nonya) which is off Jalan Pudu.
Going there again this time we found the place crowded with locals and this definitely meant it is good. We were not disappointed. Memories of good food of KL came back, as we lived in this city for three years in the mid 1980s. Then the city was not as bustling and congested. Food-wise, it has its own uniqueness and we are fond of its Yong Tau Foo (various vegetables stuffed with fish meat paste).

The rest of this short break was spent quietly at Majestic. It doesn't take much to add a little cheer and colour to my days.

waiting...knitting

Knitting is a sensible thing to do while waiting to see the doctor. There were lots of patients today and we had to sit quite some distance away. With my knitting essentials, the wait time past without fuss. With head bent and fingers busy, I could sense the tiredness and weariness of those waiting with nothing to do, many of them very old and in wheel chair.
Yet the nurses are still cheerful and smiling, speaking gently and kindly to each patient as they did the vital checks - weight, temperature, BP.
I told the nurse that by the time I walked to the assessment corner, I'll need some minutes to settle down, else my BP reading will be high. The facilities at NUH Cancer Center is really overcrowded with nary a space to walk. Come August, the new medical center building will be ready.

Today's review is positive...very encouraging... This is only half way through the 1st cycle of Pomalyst, a new drug for me. An earlier review was required since it is new and we need to know what effect it may have on the counts. Therefore we were immensely pleased that so far the blood counts are holding up well in the normal range - WBC 6.2, platelet 213, HG 13.7, neutrophil 3.6 and all the ...cytes normal! Although we will need to really see the result after a full cycle, the interim analysis means that I can continue and proceed with Pomalyst. Additionally the m-spike did drop from 5.2 g/L to 4.8, so there will be hopeful waiting as I complete the 1st cycle and move on to the next cycle. I am so very thankful that I am able to take Pomalyst without much complication. The only minor side effect - I had itchy scalp and a slight rash on my forehead to the brows and ears which went away with one antihistamine. My forehead looked sunburnt but only for a day, the antihistamine was effective. Otherwise I do not not feel any adverse effect, in fact I am glad that Pom makes me rather sleepy by night time and I am more than happy to get an early good night sleep every night. I literally struggle to keep awake to take the nightly dose at 10pm. The instruction is 2 hr before or 2 hr after meal and I have selected to take Pom,  2 hr after my dinner ends which is usually done by 8pm. So, no more late nights!

PS. On a sadder note, our beloved Cavalier passed away today...he was 10.5 years and suffered congestive heart failure. We loved him so much and will miss him. He has brought us much joy and comfort, his memory will linger on. Still grieving ...

A day so strange ... the twine should meet... good and bad news we greet.

little troubles

Little troubles do come my way every now and then. But really it has been quite some time since some kind of trouble appeared in the horizon.
Looking back, it was not so bad, but it did take time to resolve, at least for one of them.

I slipped on the kitchen floor one morning. I was in a bit of a hurry and walked too fast. I was holding a bowl of cereal and the milk spilled, and I slipped. Miraculously, I did not drop the bowl, I did not injure my back or joints. I actually felt going down in slow motion and landed on my left well-padded bum (after years of dexa). I am very thankful to GOD for the protection. A couple of reminders for me : now that I am much stronger and feel better, I forget to be that extra careful. I think my vision is not that great so I did not notice that momentary spillage. Finally, I just replaced my indoor slippers with a size too big.... from a small to a medium. It probably was the main cause of the incident. That pair of indoor slippers have been binned and I got myself another withe right size.
So I am again reminded that despite a higher sense of well-ness, I am still vulnerable. Don't walk too fast, don't forget to keep high hygiene - frequent hand wash, wear face mask in crowded places etc.

The next little trouble took a rather longer time to resolve. I had a dental crown done and while the doctor and nurse had on gloves and masks, I think that my lower lip was traumatised. Soon after, I developed a viral wart on the lip. Not knowing what it was, I quietly bore with it for a month thinking that it may heal on its own, before seeing some doctors.  After several consultations and application of anti-bacterial cream switched to anti-viral cream, it was decided the best option is to excise it! Ouch, ouch, ouch... just thinking about it makes my hair stand. But when all agreed it was the right thing to do, I immediately subject myself to the surgeon's knife - it took only a few minutes under local anaesthetic. It was certainly not a pleasant healing process with fat lip for a week and eating soft food. And even after the stitches were removed and it was slow in coming together...why... I could feel some remnant knot left...argh. The doctor was away for a week and I away for a few days after. Finally the last stitch came off 2 days ago and the wound has closed up.
It has been quite eventful but thankfully I was able to go for a 3-day church camp, no problem with eating and talking. Praise the LORD!

And more than that, I just started on Pomalyst 2mg, a week ago and was not sure what kind of side effects I may have. With much prayers, I was up and about without fatigue through the 3 days. Even on my regular weekly dexa "off day", I was not feeling "off" at all! I attribute this to prayers and GOD's grace.  I am amazed.
"Enter His gates with thanksgiving and His courts with praise; give thanks to the Him and praise His name." Psalm 100:4

Stable....progressing

I'd like to say I am stable but really not, it is progressing. Since July 2012 where m-band was at its lowest, 2.33g/L, the level hovered around average of +/-3 for a good 6 months. These were the readings with maintenance dose of Revlimid 10mg and weekly dexa 12mg.

But once I got off Revlimid, the marker slowly crept up. 

I have been off Revlimid  for half year now, Dr C thought it may be a good idea to give me break. It was definitely good, firstly blood count is normal for everything .... wbc at 6.9... wow...at this level, can fight most infections! liver function back to the black. Obviously, I can see that Revlimid does mess around with my blood count! And of course, no Revlimid means less fatigue! I literally can go a full day without sudden onset of tiredness and have to quit whatever I  was doing. I really sensed the well-being and I like it. I want to stretch my day with the extra energy!

But it looks like I cannot do without some medication. All along I had this feeling that the marker would move. I have heard enough mm specialists telling their patients to keep the "lid" on and don't let the snake get out of the basket...(Dr Richardson - drug holiday? Yes for those who have achieved molecular remission, otherwise not advisable. With residual disease, important to keep it control if patient is able to tolerate the regimen.)

Keep the mm under control!

.....maintenance...maintenance....maintenance 

Anyway, the absolute number of 5g/L is not worrisome, so just get back on the bandwagon. Dr C has suggested Pomalyst which received FDA approval in Feb 2013 but we'll need to get HSA approval to bring it in. 

The view is that I have been on Velcade (induction) and Revlimid with dexa since May 2007; while these drugs were able to bring the myeloma to a low level, it has not cross over to remission, hence it may be timely to consider introducing Pomalyst. Starting dose at 2 mg 3weeks on and 1week off with weekly 10mg of dexa. 

So if I start to look puffy again, blame it on the dex. And if I suddenly withdraw and take off, it could be fatigue. 

But I am truly thankful for the past few months when the days were easier and better. I am also thankful that there new medication like Pomalyst and even more newer medications - monoclonal antibody  - elotuzomub, daratumumab etc - these, I think may do the trick and switch on the immune system. We'll have to wait patiently.

A friend said she always pray that I have good quality of life, with this on-going "chronic" disease. Yes, the answer to my myeloma (until a cure is found) is to get a sensible balance of good medical care and adequate level of medication and aim at a good quality of life. 

I know there are others with more aggressive myeloma, I am so sorry and sad that yours may be a more difficult journey to travel. I have met many who have fought and lost the battle. But one thing I saw in them, they were brave and courageous. That is what counts, the life we lived however long or short. 

Creator GOD, please help each one of us. 

2 Corinthians 12:9 "my grace is sufficient for you, for my power is made perfect in weakness,"

Short break to KL

We started off at 7.30am, cleared both immigration checkpoints within minutes. Traveling outside of peak holiday season is great, no crowds, no queues. We reached Malacca at 10.30am, incredible!  Three hours from point to point - home to Malacca town. There was more than enough time to have our favorite lunch of  chicken rice ball. We rounded it up with delectable chendol at 88@Jonker. Even had time to wander along Jonker Street and picked up a couple of Ts. 

chicken rice balls

dessert - chendol

KL is about a little more than an hour on the highway. The newly opened Hotel Majestic is situated between the National Musuem and KTM KL train station. These are all historic buildings. Hotel Majestic 1936 was a 4-storey building, now beautifully restored with a 15-storey new wing next to it. Think Majestic Hotel in Malacca, similar construction style of the renovated old and new wings but much bigger and grander and lovelier. It's more a business than a tourist hotel. 

Its location in the historical center has a certain charm, being far from the congested hotel belt and malls of the golden shopping triangle at Bukit Bintang. I quite like that distance - far from the maddening crowd. 

The afternoon high tea offered at the Tea Lounge in the Colonial Wing is so very English. Lovely sofas to lounge and chat away the afternoon - not to be hurried. 

afternoon tea

With a late tea, we decide to have a late dinner and this is to be authentically KL. We had to have the sang har meen (fresh water prawn in crispy noodle). KL Chinese food is to be found along the whole stretch of Jalan Imbi. The hotel provides an hourly shuttle to Starhill and Jalan Imbi is a street away. It is so convenient to hop on the shuttle and enjoy (because we don't have to drive) the 20 minutes through the harrowing traffic - KL city is always congested whatever time of the day. 

We did not think we need to call Restoran Keong Kee at 54 Jalan Barat, a mistake, it is closed on Wednesday. But a stone throw away, there is New Ocean which is much larger and lots of people. It is hard to compare which is better when we only have the sang har meen once in a long while, a year ago? But we are fully satisfied and able to walk slowly back up to Starhill for the last pick up at 10 pm. 

I am so happy with my physical well-being. To be confident enough to get on a public vehicle and walking to intended destinations, is marked improvement. I tire so easily and always needed to have private transportation in case I have to get back to rest. I still get a bit nervous making such choices as going out with friends, going in group transport, never know when the tiredness sets in. I do get backache when I am out for prolonged time. The back is mechanically faulty - having had 3 compression fractures - would have weakened the spinal column and really don't know if anyone with similar problem, has been able to correct or strengthen their back. The kyphoplasty done to 2 of the compressed fractures has taken away bone pain but not the muscle aches. But really I do not have much to gripe about, I am much much better and doing more and more activities.

orchid arboretum

The hotel has a little orchid arboretum which is located at the walkway from the Tower block to the old wing. We could only look in as the glass doors was locked. Unfortunately the hotel management do not intend to open it for all guests, it is accessible for a fee, then one can dine in there. 

On the last day, we had some time to go to the Pavillion by shuttle and for the evening meal, we had it in the Colonial Cafe. It was truly an authentic Hainanese chicken chop well covered with a sweet sourish worcestershire sauce with green peas. One main and one dessert between the two of us. Of late we are happy to share a main course and we really do not enjoy full heavy meal, it is too body-busting and I just feel uncomfortable at the end. 

It was a delightful short break. KL so near.

the Behemoth and the Leviathan

Recently, I completed the study of JOB (with a group of ladies) and I was quite fascinated and enthralled by the last few chapters. As I read and thought on it. I could not help but associate it with myeloma.

There are such creatures created by GOD that terrify and tyrannize. The Behemoth is a creature of immense strength and power in his belly, with tail that sways like cedar and bones like tubes of bronze. He feeds on grass, living among the lotuses and his shadow concealed by reeds in the marsh, with wild animals playing nearby. This seemingly quiet and docile creature is unperturbed by the raging river and secure though Jordan surges at him.

The fearsome Leviathan with such hide that harpoons cannot spear, any hope of subduing him is futile and the sight of him is overpowering.  What is this creature? His back has rows of shields, his formidable teeth ringed the mouth, his breath are like snorting flashes and sparks of fire, and his eyes like rays of (red) dawn. His chest is hard as rock, such that iron he treats as straw and bronze like rotten wood. His undersides are jagged potsherds and when he rises, others retreats; he threshes about and churns the sea like a boiling cauldron.  Nothing on earth is his equal and he is a creature without fear. What is this terrible creature? He is dangerous and treacherous.

What purpose does these creatures serve, the Behemoth and the Leviathan, except to terrify and to destroy? Why did GOD even create them? Yes, GOD is their Maker. He can approach them with his sword … He gives them life, He can take away from them. “Everything under heaven belongs to me” Job 41:11

Are there behemoths and leviathans in our lives - terrifying and fearful situations? These two creatures pointed out GOD’s challenge to Job - to recognize and remember GOD’s omnipotence, He is the Maker and He is in control. The behemoths and the leviathans represent threats in our lives that appear unstoppable, unbeatable and unassailable. Indeed our defenses are weak and worthless. But nothing is beyond GOD. He is able to tame, subdue and work out everything for our good (Rom 8:28). While He allows behemoths and leviathans in our lives, He exercises control and there is a limit as to what they can do. Book of Job tells us that everything - suffering, pain, sickness, injustice and including evil - is part of GOD’s total picture.

God’s favor and blessings does not guarantee a trouble-free or pain-free life. Sufferings and pain can bring about a special closeness to our Maker; it can bring about a quantum leap in our spiritual awakening and understanding. Our part is to receive the gift of faith and to continue to trust Him. To believe, even when and especially when we do not see and understand.

Medical update

It is timely to give another medical update. Visits to NUH Dr. C is now at 2 monthly intervals. Since November 2012, Revlimid at 10 mg has been stopped and dexa been reduced from 3x4mg to 2x 4mg per week. The BIG question is what is the M-band readings. The readings of December 2012 and February 2013 are those without Revlimid.
Feb 2012  3.43 g/L
May 2012 3.63
July 2012  2.33
Aug 2012  3.5
Sep 2012   3.0
Oct 2012   3.7
Dec2012   3.5
Feb 2013  4.0
At this level, Dr. C is not concerned and is happy to keep me off myeloma drugs for the time being. This is to allow my immune system to build up on its own. WBC, RBC, HGB, PLT are all within normal range. Liver and kidney functions are normal. Thankfully after stopping Revlimid, WBC is able to come back up and ALT (liver function) normalised, it was on the high side. This shows that the bone marrow factory is working well and has resumed good function. It is probably the right decision to hold off medication and see if M-band would stay the same. My blood pressure had been going up but with the pause in medication, it appears to have improved.

In the meantime, I have asked to start on curcumin, there is no objection and Dr. C is willing to monitor with full blood count after 2 weeks.
I expect I should be feeling physically stronger. (Revlimid was the drug that gives me the most fatigue)
So ....in four weeks time I am going off for a 2 weeks holiday. Doctor said "Keep well and stay well!"
Thank GOD for everything!

6th CNY

This is my 6th CNY, Chinese Lunar New Year. For me, I will celebrate all special occasions with gladness in my heart just because I am able to. As the year passes,  by God's grace, I am able to do more and more. Therefore I am happy to enjoy the season with its cultural's nuances as best as I know how. There are some practices that I may have forgotten or overlooked. But I shall try to preserve some traditions.

I most certainly dread going to Chinatown during this time of the year. I have read and heard enough of the crowd of people thronging the stalls specially set up along Smith and Temple Street. But yesterday, we boldly attempted to make a visit. We parked along Mosque Street, which is two streets away from the center of activities. The purpose is to get all the ingredients to cook the traditional "Jai Choy" - a vegetarian dish eaten by Cantonese Chinese on the first day of the lunar New Year. 

8 ingredients - Jai Choy 

 For this traditional recipe there should be 8 ingredients - 8 being an auspicious number for the Chinese. These are Shiitake mushrooms, dried knotted lily bulbs, dried oysters, black fungus, black moss, vermicelli, beancurd sticks and red dates. I am sure each of them are spoken to represent something fortuitous. Most of the dried items, except for the black moss and vermicelli should be soaked in water overnight. It is important to cook it with "Nam Yee" which is red fremented bean curd - this gives the dish that special taste and a pungent flavor like strong cheese.

large portion of cooked Jai Choy

We decided to cook a large portion so that we can freeze some for later. Just finished cooking it and having it tomorrow - the first day of the lunar new year. Can't wait to have it with piping hot steamed rice!

plum blossom

At a recent walk to the Botanic Gardens, we saw lovely arrangements of plum blossom, specially imported for this season. Such delicate pink petals, some already fallen to the ground.

Hold lightly....

The plentiful interactions of meeting and greeting, fun and laughter, joyous feasting during December ended with a bout of scratchy throat and cough. Suffice to say, it meant that I needed medications. 

The throat was not even severely painful, only a tinge of sensitivity but as usual it very soon followed by a cough. Maybe as I had the flu jab, the symptoms were not serious, so I am very thankful. Nevertheless the low grade fever of 37.5 had to be controlled . I started with a 3-day course of Azitromycin, immediately the scratchy throat was fine but the coughing persist. Consulted doctor and he recommended 7-day of Augmentin. By the second day, the fever was under control and the cough subsided. In view of my weak immune system, I recovered within a week, that I think is quite remarkable. I thank GOD and prayers.

I believe the flu jab did help to minimize the symptoms. Antibiotics are still very necessary and important to control infection and prevent a mild infection become serious. The only question I will need to ask my doc is whether it would have been better to start of with Augmentin rather than Azitromycin. Azitromycin is my regular antibiotic whereas Augmentin is new to me. Apparently using an antibiotic type too often too soon (last used in October) maybe be less effective ? Will need to discuss this with doc.

Actually I have to admit I was trying to recover as fast as possible when I suspect a tinge of a scratchy throat ....WHY............

We were booked to travel for 2 weeks! 

So it was a difficult decision we had to make - we cancelled the trip. Cancelled flights! Cancelled hotels! Cancelled guided tours! Cancelled pick ups! All the bookings were flexible so minimal penalty. Thankfully!

Once decided, we did not let it bother us. There is always another time to make the trip. Hold lightly... Don't need to be flustered by something like this.  

We are OK! 

Bon voyage, another day....

Stable is GOOD

I have to gladly report that the last M-band reading 13 Dec is at 3.5g/L (lower than Oct's 3.7) M-band has been at below 4g/L for the past 2 years with Revlimid 10mg and Dexa (reduced from 20mg to 12mg) as maintenance.This is stable and would be considered a good reading since the doctor recommended a pause from Revlimid since Nov but keeping a low dose of dexa 12mg once a week. I have been re-classified as being MGUS.
I deeply thankful for the present situation however all this is viewed with quiet trepidation since myeloma can be quirky. Thankful that having a break from Revlimid has improved my general well-being and I am more able to do most activities with less fatigue.  I have received many compliments of looking "good". PTL.

W. Anniversary

It was totally unplanned. But during our short trip to Penang with our friends, we celebrated our 33rd wedding anniversary. Our friends surprised us with a cake and a meal at a fine French restaurant (as part of the original travel itinerary and it happened that it is same day as our anniversary, how delightful!) They ended the evening by having us answer some birthday trivia, mostly to question Paul on how well he know me after all these years. It was all done in good fun! But the best was they tried to hum some Christmas tune with our names in it.... our friends are quite a creative fun-loving lot.

rickshaw - mode of transport

front of Blue Mansion

We visited some heritage sites and historical houses - Blue Mansion of rich towkay Cheong Fatt Tze. Of course not to be missed are the local Penang food - char kway teow, or luak (oyster omelette), ngo hiang, assam laksa, prawn noodle and chendol (the stall by the road was dishing out bowls after bowls to customers standing by the roadside).

For a couple of weeks I am not on medication - no dex, no Rev - and really I feel good, no fatigue! It may be a short break but I relish every moment of it. Next Monday, is appointment with doctor, will see what he suggests next.

Infusion time

As I am a new patient at NUH, I was not sure how treatments are done there and I am due for my Zometa infusion. The reception counter was quite empty, only another patient and myself;  after taking my appointment card, I sat for about 10 minutes and was called into the treatment room. It is a very spacious and brightly lit room - comfortable lounge chairs with extendable leg rest. Zometa infusion is only half an hour but the nurses still took effort to make me feel comfortable and explained what to expect. The placing of the needle was not painful (I won't say painless!), and no bruising after.
The first time experience at NUH is positive. I would say the nurses are friendly and polite. Thumbs up for NUH!












After the above pleasant activity, it was time for lunch and we decided somewhere nearby - Keppel Club. It is beautifully decorated for Christmas. There is humongous Christmas tree in the carpark. So much festivities during this season.

 

6th Christmas

This is my 6th Christmas since diagnosis  in May 2007. The first Christmas was  all quiet, no celebration. But really, Christmas is not about parties and presents. It is about GOD's love and gift of salvation. But the world has commercialise this special and unique occasion. As Christians we must not forget the reason for our celebration.

And yes, I treasure every opportunity to celebrate. I will evenly and sensibly distribute my energy and shall celebrate the days GOD has given me. How many more Christmases will I have? I don't know. Therefore I shall - Live today. Enjoy today. Celebrate. 

For several past Christmases I could not get around to buy gifts - just too tiring and too crowded. So I only give what I knitted and must admit some of my earlier works are quite "ugly" - they are probably stuffed in some drawers, never to see the light of day... 

I am still knitting and crocheting; and yes, I am still going to be giving out my handiwork! I just hope it will bring cheer and thanksgiving to family and friends! 

Cheer and Thanksgiving ........ because GOD is good, GOD is gracious ( to me! ) I am the "evidence" of GOD's love.

Psalm 103:17-18 (NIV)

"But from everlasting to everlasting the Lord’s love is with those who fear him, and His righteousness with their children’s children; with those who keep His covenant and remember to obey His precepts."

This year, I have been able to do some early shopping. And it truly gladdens my heart to be able! Early in the month, early in the day.... no crowd. Still it's just only for family, especially for the little ones. To be able to get into the Christmas momentum can bring delight to me. So I shall partake in all of these - shopping, wrapping of gifts, "gluttony" (?, no, I shall be sensible), planning two dinner gatherings - and with much gladness!

Through it all, we hear the Christmas story being sung, we are reminded of the true GIFT - even hope for those of us with such uncertain days ahead. 

"I have come they that may have life, and have it more abundantly." John 10:10

May GOD grant us an abundant "new normal" !