Tag Archives: leukaemia

Another Week at Home!

Another week has gone by so quickly. I packed the necessities for next hospital stay.

Qipei has left her job last week. She accompanied me for today’s check up. I had a queue number of 0050 but it was never called. I was 45 minutes away from doctor’s consultation, so I decided to ignore the queue system and get the nurses to collect my blood sample.

After all the ding-dongs of preparation and waiting, the blood sample was finally dispatched to the testing lab 15 minutes before the consultation. It would usually take about an hour to get the results. We could see my doctor pacing up and down the walkway of the Haematology Centre, probably to get help to expedite the testing.

Finally, the results were out and I was ‘beeped’ into Room 10. My counts were going up, but white blood cells and neutrophils are moving up very slowly. I was inked with “unfit for chemotherapy” and given another week to recover at home!

Could it be my body knew Qipei’s not working this week and wants me to spend time with her out of the hospital? Whatever it is, we headed on to Ikea store at Alexandra. I had my afternoon snacks while she had her lunch. Organic Pasta + 5 Swedish Meatballs + Lingon Berry Drink = $3.90! What a great deal! I love my life :D

28 Days Later

Ahhh… I am just so glad that the 2nd cycle is over!

The 2nd cycle chemo drugs were similar to previous cycle except that Idarubicin was reduced to 2 bolus over 2 days. I thought it would be an easy one since the last cycle was ‘patient-friendly’.

The surprise came on the 2nd day of chemo, after Dr Mya saw me in her morning round. I was told I need to take an intrathecal (IT) jab at the spinal region to ensure that there were no leukaemic cells in the central nervous system (CNS) or the brain. Anything to do with the CNS or brain sounds frightening! Will I be paralyzed if the needle went the wrong way? Will it be painful and unbearable? But, having heard from her that many patients had been through this with not much problems, I thought I could not chicken out at that point of time. Fortunately, the IT procedure was not as bad as I had imagined, thanks to anesthesia! I followed their instruction and laid flat for the next six hours.

The next day, my appetite started to decline, but, I managed to finish breakfast. I had a minor headache. So I slept my way through to noon. When lunch was served, I sat up on bed and felt a strong wave washing up my gut… With one hand covering my mouth, I quickly signal to a nearby nurse to hand me a vomit bag. Out came the digested breakfast.

Day after day, the headache worsen. It would haunt me whenever I sit or stand up, but not when I lay flat on the bed. This could be one of the side effects of IT, I was told. I was practically sleeping  the whole day and was unaware of my surrounding. The only comfort I got was mum’s occasional visit and she help to massage my temples and forehead. Because of her presence, I knew I was not fighting alone. And for once, I selfishly wanted to keep her with me.

The only time that I was up was during meals and shower time. The sight of food, swallowing food and water made me wanted to puke. It felt really horrible. When I was asleep, images of friends and families flashed across in my mind – all encouraging me to stay strong and persevere. Thankfully, the nauseous feeling and vomiting faded towards the end of chemo (day 7). But my appetite was still bad and I was given nutritional supplement - Abbott’s Ensure® Liquid.

To add on to the torturing side-effects, I had a high fever half way through the chemo. Blood culture result showed that there was gram negative bacteria infection and the CVC line was possibly the source. The doctor had the line removed and I was back to inserting plugs and needles on both hands so that chemo drugs, saline drips and antibiotics could be administered intravenously.

I was upset that the CVC line did not stay long with me. It had given me lots of convenience. But the fever subsided almost immediately after the line was removed. A few days later, I was scheduled for a 2nd CVC line insertion. At the operation room, I was greeted by a doctor who soon covered my head with sterile green towels and begun with the procedure. It hurt a lot – even with anesthesia applied – when he tried to push the line into my body. Half way through, I heard a familiar voice asking the doctor – “So what do you do next?” It was the voice of the doctor who did the line insertion for me previously! “Sh*t!!! … a trainee doctor!”

The line insertion site felt sore and achy in the day. Around midnight, I woke up from sleep feeling a bit of numbness from my right arm down to my pinky. I was running a high fever again. Two days after the procedure, my new CVC line was removed due to infection. And I was on a stronger antibiotics, vancomycin. Dr Mya was apologetic for wanting to have the line inserted but I knew she had good intention for doing so. No more line insertion this cycle, she promised. My right arm had more needle prick scars that could be joined together to trace or outline my vein.

It was probably due to poor nutrition and the vomiting that I was low on potassium. Potassium replacement was given in the form of oral pills and drips. Receiving potassium intravenously was painful  near the IV site and I had to request the nurses to slow down the rate of infusion and give me ice packs to numb the pain.

I overcome the ordeals, my blood counts were up and I was transferred out of single room. But I was not allow to discharge as I had to complete the 2 weeks course of vancomycin antibiotics.

28 days of stay… about a week less than the first cycle, but it felt like forever…

Life Changing 34 Days

34 days of confinement and I am finally discharged from SGH! This is quite an experience for me, a life changing one.

I remember the scene that mum teared when I told her it’s leukaemia. Devastated. It’s so cruel that she has just accepted her husband’s stage 3 lung cancer, and now, she has to accept her youngest son’s new diagnosis. The sight and thought of her crying breaks my heart. I knew to make her smile again, I have to be strong and positive – and it works! This is the power of positive influence!

Although the statistics for AML patients to going into complete remission look promising, I felt a need to have my girlfriend reconsider about our relationship. Qipei knew about the possible outcomes, but she believed in me. We want to go through this together and I am certain it will further strengthen our relationship.

The first cycle of chemotherapy (a.k.a. induction chemotherapy) aims to bring the disease to remission. Cytarabine and Idarubicin were administered, both intravenously, for 22 hours over 7 days and 3 boluses over 3 days, respectively. Of cos, anti-nausea and anti-vomiting (antiemetics) drug was given prior to chemo to prevent any nauseous feeling or vomiting. This cycle was rather gentle on me – only experienced bloated tummy and dry skin. The gassy stomach was relieved towards Day 7 and there was moisturizer for dry skin.

My platelet counts dropped after chemo and brushing teeth was a no no! There was an occasion after rinsing my mouth, in front of the mirror, I noticed some bits of cookies stuck in between my teeth. My itchy finger removed it and fresh blood flowed out from the adjacent gum. In the subsequent two days, my gum bled at various locations and they just refused to clot until what felt like a blood gelatin formed. I tried to remove these gelatin with my tongue and my poor gum begun bleeding again. The pseudo-jelly salty-iron tasting blood in my mouth was really yucky! I learned my lesson to go on soft diet and not disturb any clots when my platelet counts are low.

I was prepared for hair loss and I thought it really does not matter to me. First, it was finding strands of hair on my pillow in the morning. Next was seeing loose strands of hair on my palms after shampooing. The ultimate was when I sat on my bed and shook my head vigorously, strands of hair just fell off. I laughed. Then I botak-ed myself with mum’s help. It was cooling and not so demoralizing anymore.

A few days into chemo, I began to inform a few close friends. They came with well wishes, food, entertainments and good companionships. It was really heartening and morale-boosting for me – I wasn’t fighting leukaemia alone! A particular support that I must mention is from LeRoy and his family. Aunty Susan, LeRoy’s mum, blessed me with some wellness products to complement with my treatment. She also cooked a variety of healthy vegetarian dinners and delivered them to me almost every evening. And of cos, there were lovely messages from friends who could not make it to visit me. I felt loved and I saw genuine care and kindness from everyone. All these – priceless!

My life has changed. I am now living a life with gratitude, love, hope, and zest!

Diagnosis – The Inconvenient Truth

Here’s a very good video explaining what leukaemia is:

A simple full blood count (FBC) detected unusual low haemoglobin and platelets level, and high concentration of white blood cells and blast cells in my blood, which are characteristics of leukaemia.

However, FBC alone does not differentiate the type of leukaemia I have. Hence, cytogenetic analysis on my bone marrow cells was necessary to determine the diagnosis, prognosis, management and treatment of my leukaemia. Karyotyping of my bone marrow cells shows chromosomal abnormality – translocation between chromosome 8 and 21.

I am thankful that it’s only leukaemia (with good prognosis) and the diagnosis is simple and straight forward. I had seen and heard many patients directed to different specialists and went through lots of procedures (e.g. scans & scopes) to identify where the problem lies. My advice for all – commit to regular health checkups and visit a doctor if you feel unwell. Most important of all, maintain a healthy and active lifestyle!