Tag Archives: relapse

Have a Blast!

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. :)

I Don’t Want To Fight Anymore

The last low dose chemo, Azacitidine, only reduced the blasts for a couple of days. The baddies grew very fast and we have to move on to Plan B – stronger chemo using Clofarabine + cytarabine.

I was back in SGH on 5th July 2012 for salvage chemo. A new CVC line was inserted on 7th July, followed by chemo infusion. It was a blessing that the line insertion experience was fast and with very little discomfort. Credit to the surgeon and nurses.

Clofarabine is infused over 1hr, and 3hrs later, cytarabine is infused over 2hrs. Felt light nauseousness, loss of appetite, and some occasional headaches over the 5 days of chemo. Didn’t feel like doing anything and lying on bed doing nothing gave me more comfort.

I woke up this morning, and as I was giving thanks to a peaceful night of sleep, a thought came into my mind. For the past one year I’ve been fighting so hard to kill leukaemia. It suffered damages and so did I. We’re both strong and stubborn… and probably stupid too.

I told my marrows, it would just bring us more harm if we continue to fight on. I respect its strength and resilience and I admire even more of it’s ability to stay dormant, in peace and harmony with my body. We shared so many happy times together when we are not fighting one another. I don’t need to remove you totally to make myself ‘perfect’. Life is perfect and beautiful when we live in harmony, and I’m sure this is a win-win situation for us. So why not let’s live with each other in peace and harmony for good? XOXO, your best friend.

The Fight Resumes, Peacefully

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.

At peace, at ease. :)

Going forward

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 just hope for a good long term remission now.

20 Seconds of Courage

“All you need is 20 seconds of insane courage and I promise you something great will come of it.”
- Benjamin Mee, We Bought A Zoo (2011)

The BMA done yesterday showed a 40% blast cells in the bone marrow. Dr Ho called me in the morning, suggesting a need for a new chemotherapy immediately. He asked for my preference,  to return to SGH today or tomorrow. I thought the earlier the better and replied “I’m fine with either days”, which I later regretted.

After telling mum about the news, she asked if I could return tomorrow instead. She wanted all of us to have a dinner together tonight. I thought at most I would do a late check-in after dinner if they have a bed for me today. In my heart, I was hoping mad that both Ward 72 and 77 were fully occupied. I was unprepared and not expecting to be hospitalized this week.

The call came anyway. I negotiated for a late check-in but SSN Clarice reminded me of my condition that needed to be treated ASAP. She said I should be there latest by 4pm so that the ward doctors are still around to do the necessary admin work. I gave in reluctantly. I was reminded of what Benjamin Mee said in the movie “We Bought A Zoo”. If only I took the 20 seconds of courage to call back and state my preference to return tomorrow, I would have the chance to dine with my family tonight. Boo.

This will be yet another month away from home. And for the first time in my life, I will miss a Chinese New Year reunion dinner with my family.

I was unsure how the strong chemo will change me physically. So after I had packed up, I took a couple of pictures with mum, brother and niece.

Before I left, my brother told me to get well soon and get back home soon. I nodded and walked on, feeling tears whelming up in my eyes.

Year of Uncertainties

A few days ago, I was full of hope for the new year. I was so confident of my chemo treatment, that it is coming to an end and I will have my normal life back soon. Until yesterday, Dr Ho revealed that my BMA FISH test shows a significant increase in leukaemic cells (31 out of 200 cells). This means that the chemo I had received did not help to keep me in complete remission state. He had discussed with his team of doctors and they recommended bone marrow transplant (BMT) for me.

For the past half a year, the option of BMT as a treatment was ruled out. I have been telling everyone that I am a lucky bastard – I don’t need a BMT and I would be done with 4 to 5 chemo treatments. It’s so unexpected! BMT is a big word. Going through BMT is a big decision! There are too many uncertainties for BMT – the risks involved, successful rate, side effects, chance of relapse and etc.

Given if BMT is the only option, I told Dr Ho that I would go for it. I want to get well!

Whatever obstacles and challenges ahead, I will stay strong and be positive. I know Qipei, my family and friends will be there to support me! My dad will watch after me too. 加油 TJ!

I will be seeing Dr Ho again next Tues (10-Jan) to discuss about BMT.