Monthly Archives: March 2012

Cooped and Cooked

It has been a week since I was discharged from SGH. I did not make any plans to go out as I felt my body needed more time to recover, and besides, any infection can easily send me back to the hospital. Even for the twice a week clinic follow up, I diligently put on a mask when I stepped out of the house. Mode of transport was mainly by taxi or my sister would give me a lift to avoid crowded public transport. My feet got tired, worn, and aching whenever I stood and/or walked for an hour or less – clearly a sign that I needed more rest.

I took the opportunity to catch up with some administrative work – outstanding insurance claims, updating my company and requesting for SAF Medical Board Review. My PES status review should due very long ago as my request via phone was done in September 2011. But there were no updates except for a SAF 264 Charge notification for not attending RT. I emailed my story requesting for waiver of charge and to expedite my Medical Board Review, the reply was so much faster with black and white. The charge was waived and the Medical Board Review was scheduled today. Would it be a clean discharge or just PES downgrade?

On some days, we help to baby sit my niece. Her energy level is, at times, too much for me to handle. Luckily, there was iPad 2 to keep her entertained with hours of Disney Mickey Mouse Clubhouse.

Yesterday I rewarded brother and myself with pork chop with apples and onions, based on Martha Stewart’s Recipe. With my wrecked taste bud, I could only appreciate the texture of the pork and asparagus. Well, at least I enjoyed the cooking process, though tiring.

Being put on a 3 months home-cooked-food-only dietary restriction, the ability to cook will benefit me in many ways. I get to control what I eat, the ingredients and how the food is prepared. I know I cannot rely on mum forever, so the next best person to depend on is myself! I enjoy doing experimental cooking and trying out new recipes especially when mum is not around to supervise. Shall search for more interesting recipes to cook while I am cooped up at home!

Bone Marrow Transplant – Engraftment and Recovery Phase (Post Day 0)

Day 1 – 4
These four days were like a short recovery period post-chemotherapy. Those awful side effects that were making me sick were more or less gone and I did not feel physically weak as before. However, the nurses warned me of the upcoming mucositis and sore throat which most patients experience a few days after Day 0. FYI, mucositis results in painful ulcers and inflammations on the mucous membranes of the entire gastrointestinal tract. As a result, I was told to follow the saline and caphosol gargle schedule strictly.

Besides preparing myself mentally for the incoming second (and hopefully the last) wave of side effect, it was also time to load up with lots of food to compensate for all the vomiting and poor appetite during chemo and after mucositis sets in. My responsibility for those few days was to eat as much as I could!!! Thanks to Marcus, the dietitian, I knew how much I was consuming and how much more I had to take in terms of the milk supplements. And even greater thanks to SSN Eunice who taught me that by freezing the packet of Ensure for about 3.5 hours, I would get a ‘dessert’ close to ice-cream!

Meanwhile, my white blood cells, platelets and haemoglobin levels were dropping fast, which was expected.

Day 5
The back of my throat was already red and today I felt a small pain when swallowing my own saliva. Also experienced a short pain every time I pee. To make things worse, I had a strong urge to pee like every 20 minutes. At times the urine looked red as if there was blood, though a simple dip test showed negative. Laboratory test showed no signs of urinary tract infection as well.

Day 6-7
White blood cell count was dead low and fever sets in now and then. Was quickly given antibiotics to treat the fever. Magnitude of sore throat worsen.

Day 8-10
The pain along the throat was hard to swallow. I was forced to switch to liquid diet which consisted of Ensure, Ensure Plus and Resource 2.0. Even so, I had to force the viscous milk down, each time taking at least half an hour to complete a pack of about 200ml. Drinking the milk seemed to increase mucous production and I had to swallow my saliva more often, increasing the pain. At last, I requested for morphine, hoping it would ease the pain. But, no it did not help, not even with an increased dose. The pain aggravated as predicted by Dr Linn, I stopped talking and regularly spat out my saliva instead of swallowing it. I was given the option to have tube feeding but I rejected the idea as the nutrients absorption is poor. I took the pain so my body could gain, afterall, no pain no gain!

The orange flavoured morphine syrup was probably the best tasting medicine among all, but it caused drowsiness, hallucinations, nausea and bad dreams. I hardly get a decent sleep at night, I was either choking on my saliva or waking up from nightmares.

Day 11 – 18
Requested to stop morphine and switch to Fentanyl patch because I disliked the dopey effect from morphine. However, the patch did not ease the pain either. Day 13+, my wbc showed a significant jump to 0.92 (from 0.32). Most importantly, my platelets showed an increment from 31k to 45k – a sign that engraftment has taken place. But engraftment could only be confirmed if the increment is stable.

Day 14+, platelets went up further to 68k, that’s engraftment for sure! Mucositis improved gradually as the blood counts improved and I could include soft food in my diet. A pity, the chemo seemed to have disconnected my taste buds from me, I could not taste what I was eating. SEN Giam told me usually patients’ taste would only improve around Day +40. ZOMG!

Day 16+, doctor ordered a change of IV Cyclosporine to oral form and stopped my hydration drip! If my counts are stable, I could go home soon. That was definitely music to the ears. The doctors kept me under observation for another two days and I finally got discharged on Day +18.

Cyclosprine is also known as the “smelly drug”. I can’t describe how bad it smells but it’s bad enough to induce vomitting.

The entire stay of 26 days was much lesser than the estimated 6-8weeks! In the last week of stay, Dr Teh commented on my determination to recover as the nurses reported that I took over an hour to complete my meals. I really wanted my cells to have the daily required nutrition so that I could get well soon. My effort paid off!

Very thankful for Ward 77 nurses who came over to visit me and give me their support after work, and the many friends who texted me to check how was I doing.

Confirmation about my discharge was given in a short notice. Appreciate mum and brother’s effort in doing a quick spring cleaning the day before I return. I am also grateful that Keong came to fetch me home as my family went to pay respect to my late father and grandparents. It’s good to be home, always, with your loved ones.

Bone Marrow Transplant – Stem Cells Infusion (Day 0)

Stem cells infusion day is also known as the patients’ new birthday as they have been given a new lease of life. Now I can celebrate two birthdays in a year, how cool is that?

Breakfast was served but I was still feeling bloated and nauseated. I thought that my body (and the new stem cells) needed the nutrition and so I must try to eat. An idea came… I swallowed two spoonful of my food and soon enough I was having the vomit bag in front of me. It felt great to let out the gases trapped in the gut, I had no problem finishing the entire breakfast set then.

“Dear nausea, I can’t stop you from emptying my stomach BUT you can’t stop me from filling it with food either!!!”

The stem cells were ready by late afternoon, freshly harvested from my brother’s blood. There was no operation involved as pictured by many. It was just a simple infusion just like any blood and platelet transfusion.

My brother kept a log of his peripheral stem cells donation on his blog. Peripheral blood stem cells donation is now preferred over the invasive bone marrow harvesting which requires operation. Now, saving a leukaemia or lymphoma patient who requires bone marrow transplant is almost similar to platelet donation. I am lucky to have a complete match with my siblings. There are many patients worldwide holding on to a hope of finding a full or closely matched bone marrow. You can provide a gift of tomorrow!

Bone Marrow Transplant – Chemotherapy Phase

Everyone told me it is not easy to go through bone marrow transplant (BMT) treatment – one would need to be strong physically and mentally, to go through the harsh chemotherapy treatment. I am just extremely glad that this treatment is over and hope that the transplant is successful and I would never need to do chemo anymore!!!

The bone marrow transplant protocol is divided into three phases: 1. Chemotherapy Phase (Before Day 0), 2. Peripheral Blood Stem Cells Infusion Phase (Day 0), and 3. Engraftment and Recovery Phase (Post Day 0).

27 Feb 2012 (Day -8), a wet morning. The rain had stopped but mum and I only managed to flag down a cab after 45mins. We checked-in into Ward 48A and were ushered into Room 4, the place I call home for the next one month or more. The medical equipment (e.g. infusion pump and blood pressure meter) looked first class.

The panoramic view outside the window was splendid – Duxton and CBD area on the left, PSA in the middle and cable cars to sentosa on the right. The treatment lined up for the day was an intrathecal (IT) jab and the start of 3L saline hyperhydration. I remembered during the second cycle when I had my first IT jab, the side effects were too much for me. This time I was extra careful, obediently lying flat on the bed for 6 hours, even if that meant little or no dinner for that day. Time went by slowly, I finally got up near midnight to have a cup of milo and biscuits.

28 Feb 2012, Day -7.
My obedience served me well indeed – no headaches, nausea or vomitting! One obstacle conquered! The pharmacist came with an informative handout on the drugs I would be taking and their potential side effects. It is a long list but thankfully they are not long term medication and will be gradually taken off as I get better. I have never swallowed so many tablets and capsules before in my life, they looked so intimidating!

Morning Medication

Evening Medication

Busulphan chemotherapy infusion started about 2.30pm. By night time, my stomach was churning a bit. :( (

29 Feb 2012, Day -6.
Happy Leap Year! Bag 2 of 4 busulphan infusion today. Everything still holding except for one of the CVC line stitch. Had it re-stitched by Dr Kwan.

1 Mar 2012, Day -5.
Woke up with slight nausea and a bloated stomach, signs of vomitting coming. Third bag of busulphan infusion and I am halfway through the chemotherapy phase!!! Breaking up the challenges into small bits and knowing that I had overcome these short term challenges motivated me more than counting down to discharge day.

Had my diet upgraded to A Class. Finally got to try the long awaited mutton-tofu burger, but the mutton was inducing nausea. Together with the bloated stomach, my appetite was poor. It was not enjoyable at all.

My brother, the donor, went for his first GCSF injection to give a boost to his stem cells growth.

2 Mar 2012, Day -4.
My body finally surrendered to busulphan, I puked after a sip of milo. This nauseousness is building up and it is causing me to rest more on bed. Last bag of busulphan and all I have to do, can do, was to endure. Begun cyclosporin A (immunosuppressant) infusion; it caused hot flushes, making me looked red. A better description of the hot flushes is the internal heat that one feels when he/she comes to a stop after an hour of jogging, less the perspiration.

3 Mar 2012, Day -3.
After 4 bags of busulphan, cyclophosphamide was up next. Strongest chemo between the two, and probably the strongest I have received thus far. Strongest in terms of the side effects… and it was really no joke. After the infusion at 8pm, I felt a horrible burning sensation around my mouth and it made me restless until 1am when it finally subsided. I felt defeated and wanted to give up. It was really a mental and physical struggle.

4 Mar 2012, Day -2.
After last night’s ‘torture’, I was half dreading and half looking forward to the last bag of cyclophosphamide. Been vomitting on average, twice a day, and it was really making me sick. The burning sensation made things worse, but fortunately this time it did not last as long as the day before. I knocked out happily, knowing that it was finally over.

5 Mar 2012, Day -1.
It was a day of rest before the stem cells infusion tomorrow. My brother folded some paper cranes and hung them around the room to cheer me up. :) )

I want to go home!