Honey Time

A slight setback. I was meant to start on Cycle 2 of the treatment on Monday. I went for a blood test on the Saturday before and the results indicate that my white blood count had not recovered to a reasonable level just yet. The doctor's orders were to rest until Thursday to repeat the blood test before he decides on whether I can commence with Cycle 2.  Eye roll, eye roll, eye roll. I was feeling pretty normal and took it for granted that my blood count would recover according to schedule. That was the sort of person I am - I follow schedules. 

But it is what it is and I am doing whatever I can to eat more to hopefully boost the blood count. I am not even sure if it is scientific, but it is all I can do now aside from playing the waiting game. Me needing to remind myself to eat more would have been quite a laugh just a couple of months back. Eating has now become methodical rather than a form of  release or escapism. I have resorted to exclamations of "Ooo, this is really good for me" as I munch on steam organic vegetables and fish. I embellished, my niece just handed me a slice of delicious mango swiss-roll which I did not refuse.

Patience and more food is a kind prescription. But I am usually uncomfortable with waiting time. Perhaps I have to get rid of this notion. Waiting time sounds like a holding area for something better to arrive or something to be accomplished. Whatever time given is a sweet gift especially thinking, pondering and resting time. My doctor had recently suggested that I take some Manuka Honey to improve my immunity. Perhaps waiting time should be called Honey Time instead; time taken to transform natural nectar to something sweeter for the soul. Think Honey Time will catch on? 

How sweet are your words to my taste, 
sweeter than honey to my mouth! ~Psalm 119:103

But Because You Say So

We were in Bali just over a year ago. My Facebook account prompted me recently to share the throwback. There was a picture of me sitting on a tube with my daughter gently flowing down Lazy River in Kuta's Waterbom park. My daugther looked hesitant about being on the tube but I was smiling, I think trying to convince her that it was going to be fun. I noticed that I looked weightier and it was then that I said to myself "This was before cancer". There wasn't any indication of cancer in that photo and I felt a slight disappointment with the present. I found myself wondering what was that one thing that I did or did not do in that one year that triggered this. I had told myself never to ask what or why, but this caught me by surprise.

June to June has really been a year of significant changes for me. Lots of people were leaving my previous firm due to a reorganisation. I too left in December last year and started on a new job in January which I am enjoying. My eldest son got through a tough exam year and is now in s junior college that he wasn't sure he would gain entry to. I've reduced my involvement in his studies as he is now at an age where he has to take charge of his future. I got more serious about losing some weight, reducing my carbo intake and bought a rowing machine which I have been using regularly. I was acutely aware that I was entering mid-life and wanted to make positive changes to my life. I even started a blog to record these events in my life. And then lymphoma.

I am back in Bali this week. It is a last minute trip. The last 2 weeks at work with the appropriate precautions had worked out well for me. It is the last week of the school holidays and I desperately need some time away with the family whilst I am still well enough to travel. So I applied for annual leave and booked the flights. No roaming around the island on this trip, it is just meant to be a relaxing beach holiday with no crowds and lots of fresh sea air and calming Balinese gardens.

This morning I woke up early for a run on the beach. Not sure why I've never done this before. The breeze was lovely, and sound of the waves calming. I managed to run for 45 minutes up and down the beach. As I was heading back towards the direction of the hotel, I saw the silloutte of a traditional Ballinese boat against the crepuscular rays. I was immediately reminded of a passage I recently read from the Gospel of Luke 5:

4 When he had finished speaking, he said to Simon, "Put out into deep water, and let down the nets for a catch." 5 Simon answered, "Master, we've worked hard all night and haven't caught anything. But because you say so, I will let down the nets."
6 When they had done so, they caught such a large number of fish that their nets began to break. 7 So they signalled to their partners in the other boat to come and help them, and they came and filled both boats so full that they began to sink.

It reminded me that when there is the slightest sense of disappointment, I must learn to keep my chin up and carry on not because of my own strength "but because you say so".

Normalcy

A good friend WhatsApp-ed me this morning "U haven't written your blog for 8 days". I don't have a target but it hadn't struck me that it's been 8 days. I've been back at work the last 2 weeks, and doing my best to get onto the rowing machine when I get home. I make it sound like I spend hours rowing but in reality it takes between 30-40 minutes, an hour if I count the post-rowing shower time. Once I am done with dinner and I've spent some time with the kids, I'll try to get to bed early. Return to normalcy.

But in all honesty, the new normal requires me to be a bit more regimental. I should have sufficient intake of proteins, I should not forget to take my supplements,  I should drink about 3 litres of water a day. I stepped up my efforts after the mid-cycle blood test indicated that my blood count was low. Normal didn't mean I should do what I prefer doing. It meant that if I wanted to go about feeling normal, I will have to have more fish and less pasta. I should not skip my twice a day protein supplement even though it tastes awful, especially when I mix it into beetroot juice and the TCM supplement. Normal just isn't doing what you normally feel like doing anymore.

But also the new normal ought to be more than the daily grind. Everyday is a gift isn't it? There ought to be a greater sense of mission. I do that a lot better at work than outside of work unfortunately. It is not about having a bucket list, ticking off boxes. I am not about to jump out of a plane or do a bungy. I hate the free falling sensation. I would certainly want to clock in more travels, but that isn't quite it either. 

Time for some introspection - what going to make the new normal extraordinary? Not every thought crystalizes by the end of a blogpost. Maybe that's what's held me back from blogging over the last 8 days. Maybe the full 6 months of treatment will be the catharsis that enlightens me.

Keeping Track of Dates

My second son likes keeping track of dates. If I tell him we are planning a holiday in 6 months time, he would ask me for the precise date, time of the flight, what time we need to get to the airport, what time does the flight arrive back home, and the list goes on. What I found out 2 days ago was that he also keeps track of planned holidays that didn't materialised.

Last evening, he said that we were meant to be catching our flight to the UK today. He teased me about being much better than what I had initially made him to believe. I had told him that I may have to stay in bed the whole day and could be too weak to do anything on my own. He acted out some bits of it, and said that instead I have been going to work. Hilarious. It wasn't a complaint. I suppose for someone who is very serious about keeping track of dates it was a way of processing that thought before purging it from his database. He came to my room this morning, looking only half awake to reminded me again that we were meant to be catching a flight today.

To avoid disappointing him too much, we keep the weekends spontaneous. The weekends are way too short and often times we end up not doing all the things we set out to do. I would plan quietly but only let him know once I am sure we are able to fit it in. That's usually how Sunday evenings turn out. The two younger kids would take their afternoon nap and when they are up, I will let them know what we will do. We usually go somewhere for a walk or scootering.

I think sometimes God works along those lines too. I can be so eager to know how the future unfolds - whether it will be within my set of expectations. It is easy to forget that life is a gift of mystery. I don't get to know how it will unfolds until it unfolds. But with God, I have that confidence that at the very least it will be a walk or scootering into the sunset. That ought to be good enough for me.


Ecclesiastes 3
11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. 12 I know that there is nothing better for people than to be happy and to do good while they live. 13 That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God.

Back at Work

I decided to go back to work today. I did it with due consideration to the concerns that family and friends had. Two main risks - exposure to possible bugs at the workplace and lunch options to match the hygiene standards required for someone with low immunity. The oncologist also reminded me of the irony with chemo - because of lessening side effects after Week 1, patients can sometimes let complacency set in just when immunity troughs in Week 2 and 3.

I wore my face mask almost the whole time I was in the office. I stuck a red-coloured note at my work area to let everyone passing by know that I had low immunity due to a medical treatment and that I would speak to them on the phone if they have a bug. I covered my cup with a tissue paper because I hadn't thought of bringing a lid from home. I brought a fruit salad for lunch even though I would have loved some chicken rice.

Nobody in the office had any expectations of me coming back to the office during my 6 months treatment. Everyone has gone out of their way to show me their utmost support. They've been reminding me to rest as much as I can and consider working from home if I felt the urge to work. But as perverse as it may sound, I miss being in the office. Or rather, I miss going about my routine on a regular work week. Don't get me wrong, I would love to be on a family holiday if I could. But staying at home just to let the day pass makes me lethargic and restless all at the same time. Makes me feel more sick than I really want to be.

I may not be able to do this in the later part of the treatment. The doctors did say that the lethargy builds up as the treatment progresses. Which I guess is another motivation for going into the office whilst I still feel I can. My wife was concerned that I am underestimating the risks and being idealistic about things. I wonder where she gets that idea from? :) I think having the right state of mind is important. Not to be reckless, but to keep the mind engaged, without compromising on the necessary precautions.

I should also mention that right now both my younger kids are having a cold. As it is the school holidays, they are at home the entire day. Ironically, that means that the office may be a safer place for me.

Verdict on today? I felt energised. 

On My Menu

I figured that the most sensible to thing to do in dealing with the lost of appetite and nausea would be to turn everything into a soup. Liquefied nutrients would be easy on the digestive system and ease constipation, another side effect of the treatment. A variety of mushrooms, carrots, zucchini, tomatoes, pumpkin, you name it - all organic. Fish or mince meat for the proteins. Yesterday, I realised that it's the soups that were giving rise to the lost of appetite! They were only going to be good for me if I can make myself eat them every meal.

My sense of smell and taste has become hyper-sensitive. Everything I eat seems to taste salty even when I don't add salt or soya sauce. When I smell or look at a particular food, I picture how it may feel in my mouth and stomach, and that in turn triggers a response in my head and throat. Fresh fruity foods works up my appetite; starchy, soupy and fried foods overwhelms my senses. I now have a better appreciation of how my wife felt when she was experiencing morning sickness whilst expecting the kids.

I have some dietary restrictions. According to my TCM doctor, because I have a heaty constitution, I should be avoiding spicy deep-fried foods. I am to abstain from seafood except fish. Less red meats and avoid chicken because of the hormones. Avoid refined sugars and preserved or canned foods. As much as possible eat fresh but cooked foods. My oncologist said the same thing about chicken, sugars, fresh cooked foods and also suggested that I switch from white rice to red or brown rice. 

Bananas, mangoes and other peeled fruits have been the absolute life-savers for me. The doctor said that fruit sugars are fine. I eat them fresh, juice them, or make a fruit salad. I add a protein supplement to the fruit juice in the morning. I may try baking the bananas tomorrow. I could also make some sugar-free jam from organic strawberries. And what about poached pears! Besides fruits, Italian food seems to lift my appetite. I told my wife that I may resort to Italian every lunch time when I get back to work.

Right now, I have a craving for nasi briyani with a wide variety of curries. This would be against doctor's orders so I shall have to wait a little longer to satisfy that craving. I've already cheated today by sharing a slice of  Ondeh Ondeh Cake with my wife for our after lunch dessert. In reality, whatever the recommended diet, I will have to ensure that it sustains my appetite. Otherwise it defeats the purpose.  

My Marching Band

We've had to make some changes with the younger kids' arrangements at home over the past week. I have been teaching my daughter to bathe herself to free up some of my wife's time. I've swapped her clothes to a lower drawer so that she can also dress herself. She's been managing really well. Under the doctor's advice, the ensuite bathroom which I use is out of bounds to the rest of the family. This is to minimise the family's potential exposure to chemo drugs that I may let out. So the two younger kids use the bathroom attached to the guest room. And they brush their teeth there before bedtime without as much chasing required.

I've tried to keep away from them because my daughter is at the tail end of a cough. I don't think she is infectious because it has been almost two weeks since the cough started, but I have to be careful. This is tough. I really miss being around them. I feel terrible that they are stuck at home during this month of school holidays. I try to bring them downstairs for a swim or a walk in the evening so that all of us can get some fresh air. It's wonderful to see them happy playing with each other. Really lifts my spirit up.

As much as I try to keep them out of my bedroom, every now and then they will pop in to see how I am doing. They keep me posted on what they have been up to and reports any mischief that the other has been up to. Yesterday they each brought their drawing to show me. My daughter was upset that her brother had drawn her to look so tall that she reached the sky. She insisted that she is the better artist. At night they would march in like a parade around my bed, say their goodnights and head on out just as quickly as they come in. We also have this arrangement to FaceTime each other whilst they are having their bedtime milk.

When they are completely out of ideas on how to occupy themselves, they would just lie down at the corner of my bed. I would put on my face mask and enjoy their presence.

Beautiful Words

I was given orders by my TCM doctor to sleep early. So I have been trying but without much success. The last 2 nights, I rolled around quite a bit and was wide awake by 3am. The nurse at the oncology clinic said that it could be the steroids that they gave me to reduce nausea. A friend told me not to fight the insomnia and make the most of it. So here I am blogging after a failed attempt to sleep.

I thought I would do the easy thing this time round and just let you read some of the messages that I have been getting. Names removed to maintain confidentiality and I hope they don't mind me sharing their personal words.

This message came in as I gave in to insomnia tonight:

"Hi Tuck, Sorry to know abt your condition.  May God give you His grace n bless your road to recovery. Nth is impossible with God. He healed my mum of breast cancer in Aug 1995 while she was still an unbeliever. Her majong kaki friend went to pray for her when asked by my dad who was also an unbeliever at tt time. She got healed n my parents believed in the healing power of Jesus n went to church weekly fr then on. My mum also does her daily devotional faithfully n started to pray for pple. The first person she prayed for was her dentist who told her tt a pain tt she had wldnt go away. So my mum, as a patient, laid hands n just prayed a simple pray for her in the dental room. She got healed n it has been realised after praying for a few pple tt my mum has gifts of healing. Also, with a deformed womb due to two fibroid operations, I gave birth to my triplets at age 45. All r healthy n the pregnancy was almost a perfect one except for a pregnancy diabetes which went away after that. Again, nth is impossible with God. Keep the faith n keep thanking God for hvg already healed u while u are healing n u will be healed. I thanked God for a baby n he gave us three! God is good, all the time and all the time, God is good! Rgds fr Switzerland"

This from a dear friend who prays for me because he knows what it is like to deal with a long term illness:

"Ok tuck . I'm going to have my green tea with coconut oil. Then prayers with my mom. Then some light exercise. You rest assured. You are now safe in my prayers."

From a brave warrior who continues to march on despite a relapse:

"but when it does come again, you just deal with it and carry on. besides there are new medical breakthroughs all the time. To us, its just now a chronic illness. Just treat it everytime it comes."

This from an amazing lady who is teaching me to "build an alter of thanksgiving":

"Every morn in bed, I thank God that I wake uo in my own bed instead of the hospital bed. My fan is on, which means I have $ to pay my utility bills. Which also mean I got a job. Not enough dough to save but enough to meet my urgent needs. Well enough not to be trap in an isolation hospital room, well enough to eat most of the outside food. Thank you God for opening your gate of heaven & pour out your blessings on me. Then I go on to pray for u & those whom I say I will pray for."

There are so many more who are diligently praying for me. God is just pouring out His love from everlasting to everlasting. 

But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children— Psalm 103:17