The treatment

23 05 2011

It has been some time since I last wrote. Either because I was too busy being sick or too busy enjoying the less sick days.

Once the specialist know whats wrong with me, he started me with a specific type of chemo regimen. Its called Hyper CVAD. In summary (according to Wiki), “the term ‘hyper’ refers to the hyperfractionated nature of the chemotherapy, which is given in smaller doses, more frequently, to minimize side effects. ‘CVAD’ is the acronym of the drugs used in courses A and B. CVAD (Cyclophosphamide, Vincristine, Doxorubicin (also known as Adriamycin [brand name]),and Dexamethasone (the D in hyper CVAD- this last one being a steroid)). The other part of Hyper CVAD is Methotrexate and Cytarabine. The protocol was originally developed to treat leukemia in young, fit and ambulant patients, but has since begun to be used more widely.” There are also Intrathecal (IT) insertion to my spinal cord (also called spinal tap affectionately by doctors) at every cycle (8 planned in total) to inject the chemo medication to my  spinal canal (intrathecal space surrounding the spinal cord), and not to mentioned the painful bone marrow aspiration (BMA) at every start of the chemo cycle to see the latest blast count and effectiveness of the previous cycle exercise.

Hoyeah.. at least the doctor considered me as young, fit and ambulant.

I initially checked in to Hospital Sultanah Aminah (HSA) on 4th April 2011. Bringing my reports from Johor Specialist Hospital (JSH), the hospital admitted me to a class 3 ward, Ward Dahlia. Standard procedure I guess. I spent overnight before I get to see my hemothologist specialist, whom then transferred me to his specialised ward, the Hemotology Ward.

The ward is much much better than in ward dahlia. Everyone here is getting the same room and treatment either you registered as class 2 or class 3 patient. Theres no patient here registered as class 1. I’m not sure why. And the only difference class 2 and 3 here is the way the serve the food to us. Class 3 in blue trays and class 2 in proper plates and cups. But the attendant sometimes got confused and mixed up the settings. Oh well.

The building is sitting proud on top of a hill, sandwiched between the Monash University Campus (still within the hospital compound), and overlooking a magnificent view of the Tebrau Straits and Singapore. It’s very peaceful here and no wonder it used to be the royal and 1st class ward. Sound effects of the birds and ‘unggas’ provided a resort or forestry feeling while staying here.  

I registered as class 2 patient as I used my wife’ s guarantee letter. She is a teacher in a government secondary school. Chatting with a university mate whom visited me recently, we reminiscent how we actually planned that as we choose our spouses, one would work as a government servant and one in the private sector. To enjoy the best of both worlds.

Indeed we had, I had better pay while my wife enjoys better job security. My company provided private medical benefits for the whole family such as unlimited outpatient treatments at panel clinic and claimable if the treatments were from a non-panel clinic, and insurance coverage for specialised treatments. She had the benefit for public medical coverage, housing and car loans and other public servant benefits for our family including here parents.

The hemotology ward was built-in 1929 initially as the royal ward. Sometimes later it was converted into the first class ward and now becomes the hemotology ward. It is a two storey building with day clinic at the ground floor, and on the 2nd level there are 8 room s with 2 beds each. Theres a ninth room with 3 beds slightly bigger than the rest of the other rooms used as isolation room in case of chronic of infections and there are risk of infecting other patients. Every room had their own toilet and every bed has their own sink and clothing cabinets. Its like staying in a cutting edge 1st class ward during post independence 60’s.





Humility and choice

30 04 2011

When we were kids, we were naturally compressed and suppressed. Our arms can’t reach far enough, legs not tall enough, brain not big enough. Thus we are forced to accept whatever that were presented by adults, we shuffled and ruffled quietly (some rather violently) and wished  for better days and things as we grow up. Hence the ever popular statement “when I grow up I wanna yadaa yadaa yadaa.”

Ever since I’m 5 years old, I stop eating fish and any fish by products. It happened after a massive fish bone got stuck in my throat. It was traumatic and I promised myself I would never eat fish again. And I have been fish free for the past 25 years.

Choice and preference becomes a privilege as we grow up. At primary school I received RM1 daily allowance which I splur at the school canteen. It becomes to RM10 per week in secondary school. It has given me the luxury of getting what I prefer to a certain extent. It gets better with a bicycle and a nod to use public buses. The reach and choice gets better.

At secondary 4, I joined a full boarding school and within a week I learned the concept of humility. Everything was pre-scheduled and organised. From when to wake up, what to eat, afternoon activities, holistic sessions and what time to lights off and sleep. To live like the others.

A week after orientation, my parents came to visit. I pulled my mom over to a corner and said thank you. Never I expected tears of joy from a mother’s eyes just by those simple words.

These memories came up to me for a reason.

Being a fully capable adult, I am very unrestricted to access all my whims and fancies (within my financial and moral limit of course). For items I can afford now, I manage. For things I still cant afford, I dream. For the foods I want to eat, I pursue. “Jalan2 cari makan” to some extent.

Being in a government hospital brings me back to childlike conditions. All privilege and options are no longer there.

After registration at the emergency room, I checked in at “wad dahlia” a 3rd class ward. The ward was packed with sick patients with beds overcrowding even the corridors. I got a bed beside a window and I started to sweat even before anything. 6 patient share 2 oldish ceiling mount fan.

A houseman doctor inserted a very painful branule to my left vein after 4 failed attempts at other pain-less locations. The services rendered by nursing students and young doctors.  

The heat, constant noise and busyness of everyone and everything is not what I’ll say conducive for healing. And old chap even died in front of my bed without me noticing it until his body was carried away an hour later.

It’s take it or leave it here. I don’t complain, I see it as normal for a public hospital.

After a month or so, I feel humility and compassion back to me. Eating foods from the hospital tray really reminds me of the life and life shaping learning that I had during boarding school.

There’s an english proverb that goes about drinking coffee without sugar once in a while, just so that we remember the bitter taste and appreciate more the sweetness of sugar. Well, being in a hospital I have definitely appreciate more of what I have. Except that I still dont plans on eating fish.





Coping – Unexpected twist

26 04 2011

In Elizabeth Kubler-Ross‘ book, “On Death and Dying“, she identified five stages that a dying patient experiences when informed of their terminal prognosis.

The stages Kubler-Ross identified were:

  • Denial (this isn’t happening to me!)
  • Anger (why is this happening to me?)
  • Bargaining (I promise I’ll be a better person if…)
  • Depression (I don’t care anymore)
  • Acceptance (I’m ready for whatever comes)

While Dr. Roberta Temes in the book, “Living With An Empty Chair – a guide through grief.” Temes describes three particular types of behavior exhibited by those suffering from grief and loss. They are:

  • Numbness (mechanical functioning and social insulation)
  • Disorganization (intensely painful feelings of loss)
  • Reorganization (re-entry into a more ‘normal’ social life.)

I guess my initial response to the new predicament is somehow mixed and accelerated. I tried to deny first, but being someone with a science background (I hold a degree in science majoring in physics and could be a physicist if I chose to). I knew the doctor is doing the best prognosis based on his trained discipline and experience. I was at a specialist hospital anyways.

There was no anger. But a deep feel of question. Why me? Why must this happen when I’m at the fifth gear of my life. I was cruising nicely and accelerating career wise. Is this just plainly put as, my early earthly retribution? 

Numbness, yes. A hard layer of shell consisted of my smiling face and conjoint with my technical questioning to the doctor, (What is my expectation, how long do I need to be on MC, how’s the treatment like, what’s next, what is the name of the disease again, etc). Useful actually when you are coming out of the doctor’s room and other patients looking at you, probably betting on some dramatic exit from the doctor’s room.

Bargaining? I think the bidding has ended when the doctors presented me with the reports and verbal news. In fact during the whole night before A Day and until the breaking news, it was all bargaining between me and god.

Now, a month after the A Day, I see clearly on how I managed the depression and grief.

While waiting for the prognosis, my du’a to God was mainly consisted of “Please God, please MAKE the results as negative. Please MAKE the doctor say “it’s nothing serious and Zul, you only need to take this medicine and you’ll be well.” …. I promise I’ll be a better person later.”

Then it goes to, ” Dear God, please help me heal, I don’t want to be out of action (working and living) for more than 3 months”

Weeks passed by and the mode has changed ” Dear God, I accept this reminder that you have given me. And I am at peace. Please heal me.”

Then it changed dramatically. Relating to a talk by Dan Gilbert and Barry Schwartz both at TED events. The first titled ” Why are we happy why aren’t we happy” and the latter “The paradox of choice“. In summary both narrows down to the concept of human beings able to simulating and perceiving happiness, and how we human is more acceptable for situations where we don’t have a choice and in fact forced us to be happier for the things that we cannot change.

My du’as now basically architectured around “Dear god, I accept the reminder and I THANK YOU. But I still want to heal, please MAKE my healing brisk and easy. Please eliminate the disease, the pain and the fear. You are the owner of this whole universe. You are the most loving, you are the supreme giver and taker. ”

Now why do I say thank you? I am beginning to see a lot of things that was not clear and appreciated previously. Thing’s that might be hijabed, a sign from a god or just basically what I’d like to called, destined as fate. Well, that will be another chapter to tell.





The SMS

26 04 2011

It took me about 1 hour before I can actually talk properly. I cannot bring myself to talk to my wife or even anyone remotely close to me (except the nurses). Thus, with pure hardness and shaken fingers I smsed the exact words to my mom in front of the Emergency Room.

” Mak, Zul tengah sedih sangat. X boleh nak cakap. Zul kat Hospital Johor Specialist. Nnt mak bagitahu Ain Zul kene masuk ward. Minta dia bawakan apa apa yang patut malam ni.”

It was the harddest SMS that I’ve compossed in my life and my mom simply replied with “OK, take care”. I was afraid she would panic, but she did’nt.

I figure now, either she’s a very cool mother or rather she did’nt expect the gloomy situation that triggered the SMS.🙂

My blood counts were really messed up. Below were the numbers that was recored for that day. 

Red Blood Cells

8.2

(normal range 12-14)

Platelets

18

(normal range 150 – 400)

White Cells

21

(normal range 4 – 5.3) 

That night 3 bags of blood were transfused unto me.

 





The A Day – the kick start of an awakening

25 04 2011

We’ve made arrangements for my weekly KL trip for the next day and decided to visit my panel clinic after office hour. Within 30 seconds of telling the doctor that this is my 3rd visit in 3 weeks, and I’m starting to feel a lump under my ears, he reacted differently like a sleepy person just got injected with caffeine.

He started caressing my neck and start asking if there are also any swelling on the other lymph areas. Checked my eyes and palms, he confirmed that I am pale. Duh! Immediately issued a reference letter to Johor Specialist Hospital and demanded for my poor life for me to cancel my KL trip. He even insisted me to go the hospital that very night. After much hesitation, I cancelled the KL trip.

That night I can’t sleep well. The date was 12 March 2011. The morning was normal, I came to office waited until a cool 8.45 AM to visit the HR department. Requested a guarantee letter for my specialist visit. Reached the hospital around 11 AM, and managed to see the doctor around noon.

Now I am afraid of needles or anything remotely sharp and being poked unto my skin. It’s rather comical now for someone who is this profoundly cowardly of needles is now a blood cancer patient. I literally took blood test maybe around 5 years once, and now I’m being needled every 2 days. A Branulė is constantly in my arm. And I’m gonna be an Ironman wannabe later with a Chemo-Port to be installed to my chest. We will get to that much later.

Took blood samples, chest x-rays, neck and stomach CT scans; I see the same doctor again around 5.30.

He looked at the reports and the outcome is not good. Early prognosis say’s that I got lymphoma cancer and I MUST be warded that night and may not work for AT LEAST 3 months. I acted cool. Salespeople has this skills and experiences in putting blank emotionless face. Tried to ask intelligent questions and went out of the doctor’s office calm and poised. Found a corner and I broke down. 

It feels like I had my luck and good fortune for the first 30 years of my life; and now I’m ran out of luck. I am at the pinnacle of my life and its all sliding downhill from now on. For the rest of my 30 years.





Prior The A day – The denial and disregarding demeanor

25 04 2011

The coughing started at the excitements of 2011 Chinese New Year. As an Solution integrator and IT department at the place I work, other salespeople also tried sucking us by giving us truckloads of mandarin oranges. And I’m a sucker for fruits. Oh yes, I ate the oranges like I ate sweets like i ate chocolates like i ate almost everything wonderfully heavenly this kind world provides. The coughing come and go with off the shelf medication I bought at pharmacy.

Few weeks later, I started to cough back. I thought it should not be an alarm as it might be a re-accurance. But this time its different. There’s no phlegm, there’s no inflammation, just plain coughing and breathlessness. I coughed so hard and had to held my back every time I want to cough, it has even caught my back abdomen. I spent 3 weeks coughing, ferried between panel clinics, pharmacy, 7-11, sundry shops and Jamu shops (special blend honey) for off the shelf cough syrup. A day come when I started feel my lymph under my ears started to grow, swell actually. I read on the net that the lymph is the mechanism that works to fight of body evil or bacteria, lets fondly call it bovil. 

The jobs of your lymph nodes is to act as a filter for the various areas of your body wherein they are located. Herein they form a type of “honeycomb,” which is made up of reticular connective tissue that is filled with lymphocytes. The lymphocytes are actually what collect and destroy the bacteria and viruses that are found in the area of the body they are located. So, whenever your body is trying to fight off an infection, your lymphocytes will rapidly multiply. This is why doctors will occasionally check to see of your lymph nodes are swollen whenever you go to see them when you are sick.

My immunity reserve is getting lower, so the lymph is doing all they can with what they have. So when it started to swell, means its working OVERTIME.

I started to shave all my manly facial growth, and yes.. even my the lymph under my neck has grown. Thus, I made my own conclusion that the coughing is actually caused by my growing lymph that blocked my airway, making me cough and breathless. Consequent discussion with the doctors, and taking in some Dexa (a cancer medication) the swelling stops and I stop coughing and breathing becomes normal. There are actually between 500 and 600 lymph nodes that are distributed throughout the human body. Some of these lymph nodes are found in clusters in the underarms, groin, neck, chest and abdomen. Being slight obese (but charming) physically, I won’t be able to see any noticable swelling on other parts of my body (it’s covered in premium fat) except thru clinical procedures.

There is also this enormous feeling of tiredness and constant night sweats. I am falling asleep everywhere and my passion for life was thinning. I no longer participate actively in communications & physical activities, I sleep easily during lunch break and sleeps as much as possible on any other time I can find. Falling asleep in the middle of writing a business proposal, warming up the engine in the morning and during traffic light stops when I can’t find the time. I thought it must be because of the works and immense load that I have to travel JB-KL every weeks for the past 4 months. And I keep telling myself, it’s the coughing syrup that’s making me deary and sleepy all the time.

I’m getting paler by the days. My mom actually the 1st to  notice this as I meet her a few times a week. There are gaps in the days so noticed compared to people who see’s me everyday. I keep telling her it’s nothing, just plain tiredness and blame it on the lighting. I still think I’m healthy. It was about 5 days from the day of the picture below when I was refered to Johor Specialist Hospital by my panel clinic as I complained of my paleness and enlarged neck lymph nodes. (How I wish somethings else were enlarged too).





Plans and SOP

24 04 2011

Everybody has plans. Either its a next day, next week, next year plans; or maybe after reading this, you’ll already know what to do. The problem with planning is; fundamentally as it is, it is based on what you want to do. We don’t plan what we don’t what to do.

Organisations has these things called SOP. Standard operating procedures. It’s a nifty little concept. The management or a dedicated unit identifies what the organization want and plans to do. And documents it. But the best part is, they also plan what if the things they don’t want to do, happens. If a machine broke down, who to call. If it came out red instead of blue, whats the rectification process. If plan A fails, fallback to plan B.

And it hit me last month. I don’t have my personal SOP. Well I planned my life, and i believe it is going very well. Until i went to a doctor for a coughing sickness that bugged me for 3 weeks and presented with a prognosis of cancer.

You see, I’m a happy going man. Finished my SPM at a full boarding school in the top quarter, over stayed my university terms but completed my pure physics degree and got my dream job as a salesman at a top local IT company. 6 years later, im a 30-year-old man with a better job, a house overlooking a lake, a 100k car, a wife with 2 beautiful daughters, a bibik and lots of debt. And i am content and happy.

This blog shall be like a journal to store my ideas, ramblings, thoughts, and my experience during fighting cancer. It may sound very relaxing at first, but let us see how my mode of writing goes as my treatment undergoes. I plan to make an ebook out of my notes here, and if I would put it as a blog, it would be a work in progress, until I believe I’m cured. And if I dont, you still get to see whats up to it, like the MJ This IS IT video then.🙂

 








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