Here’s the official announcement – I’m no longer in remission.
The aggressive blast cells are out to take over my world again. This time, they could be successful as my medical team has exhausted all possible curative treatments.
Currently, I’m receiving low dose chemo to keep the blast cells down. It’s a matter of time before the leukaemia becomes resistant to the chemo. Then I’ll have the option to go for a higher dose chemo (with more side effects of course) or oral chemo which only has effects on blasts in the blood but not in the bone marrow. No treatment and palliative care can be considered too.
Whatever it is, I have decided that my own treatment plan is to be happy with the days that I have.
Welcome, 2013! Ever since my diagnosis in 2011, every single day is like a precious drop of water in the desert, and it is even so after the subsequent relapses.
2012 kicked off with a shocking relapse, but I am glad that after all those treatments, I’m in remission again at the end of the year. One of the best lessons I had learned in 2012, is to appreciate what I have before time makes me appreciate what I had.
The entire year of treatments made me appreciate my family and girlfriend who are always there for me when I needed them the most. Not to forget all my friends and the dedicated nursing team who cared for me and my family as well.
My humbling experience told me that I must reciprocate my gratitude when I get well, or at least whenever I am feeling well. The best way to do this, after much thought, is to pay it forward by amplifying my supporters’ loving kindness and reach out to the community.
With that, my resolution for 2013 was set – To be a better man and care for my community.
To be specific, in 2013, I aim to:
Raise awareness about bone marrow donation.
Convince 100 people to register as a potential bone marrow donor.
Participate in Hair for Hope 2013 as a shavee and help to raise S$10,000.
Develop a socially responsible business.
What would your new year resolution be like?
If you have not thought of any, do consider joining me in what I will be doing.
Leave a message to let me know you are interested and I will contact you shortly.
Wishing all my family and friends a fulfilling 2013. May you be well and healthy, and blessed with good fortunes and true happiness. Cheers!!!
After last week’s drop in blast counts to 4%, I was so happy and hopeful that it will reduce further this week.
Unfortunately, the numbers shot up to 29%.
This calls for Plan B, which is to re-transplant using my sister’s haematopoietic stem cells. The transplant is likely to be scheduled in two to three weeks time. The following week will do another bone marrow biopsy and pre-transplant checks (vision, heart, lung, kidney & liver function, dental and etc.)
Knowing my condition well, this day will come eventually.
In any case, I am very contented with the quality time I had for the past 7 weeks.
There is still a glimmer of hope that GVHD (stimulated by DLI) will take place within this two weeks. Then, perhaps, I may not need a transplant.
Next weekend, Singapore will see more botaks in Hair for Hope 2012 at VivoCity! After my registration for this Charity event in April, I got excited with sending out messages to friends on Facebook, asking for their support and donations. I must give thanks to Eugene Chen, LeRoy Chan (a.k.a. The Hungry Cow), Dr Koh T.Y., Catherine Ling, and many more who have helped to spread the message to their contacts.
We managed to raise awareness about children cancer and gathered $5,468 (as of 19 July 2012) from over 50 people, for Children Cancer Foundation. I agree with Mr Paul Max’s comment, everyone has their own battle to fight in life. I think it makes us a better person to be able to take a break from our own battle, and help others fight their life battles.
I won’t be able to shave my hair at HFH ’12 as I’m still confined in SGH. My blood counts (today – Hb: 7.9, WBC: 0.05, Plt: 27k) are still on the down trend, requiring transfusions and GCSF – WBC booster shot – every now and then. But it’s okay, I’ll continue to use this 10 days to reach out to more.
Apologies for the lack of post for quite a while. I was away for a week of low dose chemo, went home to readjust myself physically and mentally. The fight has resumed and I would like to put my experience and thoughts to words over here as usual.
It was really difficult to accept the truth because I’d placed so much hope and expectations on the bone marrow transplant. I felt depressed and scared at the thought of a bleak future. Am I too young to go? I still have many unfinished businesses? My mum would be heartbroken! All these thoughts gathered in my mind and crowded out the optimism I used to have.
Being a fighter, however reluctant I was, I knew the fight has to continue. This treatment could be done outpatient, but I had the option to do it inpatient as well. Since I’m covered with medical insurance, it would make economic sense to go inpatient and claim. This will also ensure the next 3 months of outpatient bills are taken care of by the insurance company.
Nurses, doctors and friends who learned about my condition didn’t know what to say. They could feel my level of optimism was going down. But deep in my heart, I knew they wished me well and hope things will turn for the best eventually. In the silence that came after I explained my condition, my words echoed in my ears and I managed to break a weak laugh and said “no worries, my fighting spirit is still high!”.
This low dose chemotherapy using Azacitidine (Aza) was administered sub-cutaneously, under the skin of my tummy. It was coupled with an anti-epileptic drug, Valproate, to enhance the efficiency of the chemo. The chemo costs $700+ per injection and I received 9 jabs in total. Thankfully for the medical insurance, I’m paying nothing. Valproate was given 5 tablets for 3 times a day and it made me groggy even the next two days after my discharge from the hospital.
The chemo made me vomitted a bit and rashes developed on the front trunk of my body. Doctors suspected the rashes could be either graft-versus-host-disease (GVHD) or drug allergy reaction. I was kept for another day so that the dermatologist could remove a small piece of my skin for biopsy. We were hopeful for GVHD so that there’s graft-versus-leukaemia to keep things in control. However, 4-working days later, the rashes subsided and it’s proven to be allergy reaction. :-/
During the stay, I am glad that Ewan loaned me books on Happiness and The Art of Meditation, both by Matthieu Ricard. The books touched on the Four Noble Truths which I have learned many years back in Manjusri Secondary School. I took on further reading on the Internet about the same topic with great interest. After my discharge, Ewan recommended that I listen to Ajahn Brahm’s talks on youtube. I got quite ‘addicted’ listening to the monk and this explains for my absence from TJFC. I was seeking wisdom and enlightenment.
Ever since I started meditating, affirming my sub-conscious mind, and watching Ajahn Brahm’s videos, I found peace and joy in many things that I do or happened to me. I think for once, I really understand what is living the moment. Every day has been a great experience thus far, and I think I’d moved out of the shadows that was over me two weeks back then.
Appreciate all those who prayed for me and sent me well wishes. It’s been proven again that there are certain things that are not within our control. The blast cells in the bone marrow went up to 30%. What we possibly can take in control now, is to take up a low dose chemotherapy to bring it down to less than 5%. Then carry out a donor (my brother’s) lymphocyte infusion, hopefully will result in a graft-versus-leukaemia reaction, keeping me in remission.
Because the relapse occur very close to the transplant, giving another high dose chemotherapy or transplant may result in more serious complications.
I was quietly celebrating my life after 1 year of diagnosis. Every thing looked good, just the way we wanted it to be after the transplant.
But just two days before Day +100, we found 0.6 x 10^9/L of blast in my blood.
Where did they come from?
The high dose chemotherapy should have wiped out all bad blood in me. In April, I was totally cleared of leukaemic cells. My blood cells and bone marrow then were all matured from the stem cells my brother donated to me.
What went wrong?
I can’t believe this is happening to me, again. I dread the thought of chemotherapy and bone marrow transplant. I dislike hospital stays.
My hope and optimism are consumed by this devil, every time it returns.
Last year I was attending a Workplace Safety Workshop on my birthday. The very next day, I was down with high fever because of the abscess that was swelling like the size of a Ricola candy (pardon me if you are sucking on one now) on my left axilla. What happened next was one full year of disaster that changed my life.
27 might have been a struggle, but I made it to 28!!! I’m a fighter, a good one I conclude! Hahaha
Traditionally, in my family, birthdays are celebrated with symbolic hard boiled eggs. But this year, I was treated to a simple, nice and warm pot of mee sua with kang kong, slices of pork collar and hard boiled egg for lunch. It wasn’t intentional, but my mum just decided to cook mee sua for lunch. In anycase, it’s very much appreciated!
Spent the morning putting up the Hair for Hope 2012 donation link on Facebook, hoping that I can reach out to more friends, spreading awareness of children cancer and help to raise funds for Children’s Cancer Foundation. My simple birthday wish is to raise funds for CCF and I think so far, I’ve done quite a good job with the support of my circle. Celebrated my birthday with CCF by making a gift of $280. Think from this year onwards, it will become a tradition of mine to give on my birthday!
The afternoon with Qipee was simple, just the way I wanted it to be and what I would call quality time. From Tampines, we took bus 29 to Netheravon Road to check out The Coastal Settlement and have our dinner.
It didn’t take me long to fall in love with this place. I like the vintage decorations and settling on the sofa made me felt like home. Tables were adequately spaced apart giving personal space to diners. As we were there early, I felt I had the whole place to ourselves.
Food were served pretty fast and the portion looks good for sharing between 3-4 friends.
Who can resist these truffle fries?
Truffle Mushroom Fetuccine
Happy girlfriend with happy food and happy birthday boyfriend (behind the camera)
I’m a sucker for self-help books and I found 29 Gifts very inspirational and close to my heart. Found this book by chance two weeks ago, and it got me curious about how Cami coped with her illness, overcome the odds and initiated a goodwill movement over the Internet.
Cami was diagnosed with multiple sclerosis (MS) shortly after one month of her marriage. MS is an incurable autoimmune disease in which patients’ immune system attacks myelin, a protective layer for nerve fibers in the brain and spinal cord, and causes disruption to the message transmitted along the nerve. MS upsets Cami’s life badly and she became very negative about it, constantly asking the question, “Why me?”. That’s a very common thought of newly diagnosed cancer patients and their families too!
One day, Cami met an African medicine woman Mbali who prescribed “Giving 29 gifts in 29 days” to her. Because “By giving, you are focusing on what you have to offer others, inviting more abundance into your life.”, Mbali told her. In the month-long project, Cami realized that her focus on giving had unknowingly helped her to “let go” of some sufferings and problems. Along also came many helps and pleasant surprises which she learned to accept graciously with gratitude. Cami’s life had changed for the better and eventually she had founded 29Gifts.org hoping to recruit more givers in this world.
In my family, we were always taught not to trouble others and to politely reject gifts in kind. If we were to receive any gifts, it’s only right that we return a gift of similar value. A bit of traditional Chinese culture, like the exchange of mandarin oranges during Chinese New Year. Perhaps it’s because we don’t expect to receive so it wasn’t a habit to give either. Last year when I was having my first cycle of chemotherapy treatment, LeRoy’s mother insisted on bringing healthy home-cooked vegetarian dinner to me daily. After politely dissuading her a few times, Aunty Susan told me, “I don’t have to give, but I want to.”. It wasn’t the tasty meals but her time and and sincerity that touched me deeply, as I later later found out that her late father was hospitalized at Tan Tock Seng Hospital. She could have spent the time with her father, but she made time for me just to make sure I have good nutrition to fight leukaemia. My mum, then, was unable to visit me as often as she would love to because she had to take care of my late father who was getting less mobile. Hence, we were very grateful for Aunty Susan and her family for their unconditional generosity and kindness.
Cami’s memoir reminded me of the goodwills I’ve received. It has also inspired me to start giving unconditionally and consciously, and thus, the very first project to raise funds for Hair for Hope 2012! (Please support me!!!) Since May is my birthday month, I decided to embark on this journey of 29 days of giving. I will try to update my daily givings here.
I would recommend 29 Gifts to anyone caught in a tough situation and needed a little inspiration. Let us all be reminded that there are miracles, good, humanity and abundance in this world. Experience a change of perspective in your life and pass on this goodness to others! Thank you Cami for sharing!
P.S. If you enjoy giving, you may like Katie Sokoler’s (owner of blog Color Me Katie) Love Note project and the recent Easter Egg Hunt project – leaving pleasant surprises around for people to find. That’s how fun giving can be!
Over the past 11 months of cancer fighting, I’m overwhelmed with gratitude for the help and support given to me. In the process of graciously receiving from others, I’ve learned the beauty of unconditional giving. With the latest news of my health gradually returning, it dawned on me that perhaps it’s time for me to be on the giving side.
Recently, I saw on Facebook that Hair for Hope 2012 (HFH) is opened for registration. HFH is turning a decade old this year and it has a growing number of supporters over the years. I remembered last July, after my diagnosis, Ewan, LeRoy and my brother supported HFH as a walk-in shavee. Their shaven-head raised curiosities among those they’d met, and with further elaboration, they’d helped spread awareness on children cancer. It goes to show that the initiative is meaningful and it is very successful at raising awareness for its cause. Besides promoting awareness of childhood cancer, the act of shaving bald serves to tell children with cancer and their families that they are not fighting alone, and that its alright to be bald. The monies raised will help to fund the programmes and services that the Foundation provides, for example, counselling, caregivers’ support, therapeutic play, financial assistance, palliative & bereavement support and etc. I believe the event will most likely see volunteers and donors stepping forward to offer regular services and donations, thereby creating a supportive community for the beneficiaries.
According to the statistics on HFH website, the most common age group of newly diagnosed children in 2010 is between age 0 to 5, with leukaemia as the most common type of childhood cancer. I could imagine how the parents would feel upon receiving the “life changing package” that slowly unravels along with their children’s diagnosis. Shock & disbelief, emotional, worries about treatment and prognosis, work disruption, financial stress, caregiving stress and etc which all sums up to two words, life changing. The young patients will never understand why are they different from their peers – bald and always away from school due to regular hospitalizations – and why do they have to tolerate the side effects from the harsh treatments.
As an adult leukaemia patient, I’ve received a similar “package” together with the diagnosis as well. Chemotherapy, in my case, was done inpatient and each hospital stay averages about four weeks. The poor immunity that arises after chemotherapy, may result in infections that can be fatal and thus I had to be isolated in single room. Loss of hair occured in patches, and unlike a clean shave, it’s hardly linked to style or fashion. My hospitalization bills have added up to over S$80,000, and that’s excluding the clinical tests and appointments after discharge. Too many to mention.
However, I’m very grateful for the encouragements and support from my family and friends, the excellent health care standard and services provided by the SGH Haematology team, the counsellings and financial assistance provided by the social workers, the understanding and support from my company and colleagues, and the list continues. With their help, I was able to focus on treatment & recovery and change this “package” to greater hopes and a better quality of life. I believe that’s what the Children’s Cancer Foundation is capable of doing in helping the children with cancer and their families.
I’ve been hanging on the thought of becoming a shavee for HFH 2012. As a registered shavee, I can raise funds forChildren’s Cancer Foundation by getting people to pledge their donations in support of my cause. For the past one week, I couldn’t decide on the amount I want to (or can) raise. I was afraid of not meeting my target and I didn’t want my family and friends to feel obliged to give. But today, I found a compelling reason to make a decision and register for HFH 2012. April 17, coincidentally, is my late father’s birthday. We’ve lost him to lung cancer last December. He was a strong fighter and he’d taught us that regardless of the results, always give our best and never give up. With this in mind, and on this special day, I decided to challenge myself to raise S$10,000.00 for CCF by spreading cancer awareness to my contacts and, hopefully, more. Papa, this is for you!
For the kindess I’ve received, I’d like to take this chance to pay it forward. Please support Children’s Cancer Foundation and my cause by making a donation here. Alternatively, you can join me for a shave and help raise funds for CCF by registering today. Lastly, please help to spread this message on children cancer to people you know and inspire them to get involved.
Hair for Hope 2012 will be held on 28 – 29 July 2012 at VivoCity Central Court