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.