WEEK 2: Radiotherapy Session 8 - 12 & Chemotherapy Cycle 2

November 29: Week 2 (Session 8 – 12) progressed much as Week 1. Here’s how I look like after one week. This picture was taken at the beginning of Week 2, not too much difference from last week I must say. As Tomotherapy’ radiation is delivered slice-by-slice (tomo is actually Greek for ‘slice’), the radiotherapist told me that I should be anticipating a “bad-case of sunburn” at the radiated area (being my cheekbones down to my collarbones). Everything went smoothly throughout the five radiotherapy sessions so I was quite happy. I am eating well - though my Mom put me on a very strict, healthy diet, I admit I did asked Sara to buy me a McD burger (or two) :)

Guilty as charged!

Back view - Beginning of Week 2

Front view - Beginning of Week 2

RADIOTHERAPY WEEK 2 (SESSION 8 – 12)

Session 8 – 29 November 2010
Session 9 – 30 November 2010 with Chemotherapy
Session 10 – 1 December 2010 (Yikes, it's already December!)
Session 11 – 2 December 2010
Session 12 – 3 December 2010

TAKING SPECIAL CARE OF MYSELF DURING RADIOTHERAPY

Skin Care
According to the radiotherapist, I will experience dryness and redness of the skin in the radiated area. When will that happen? Let's just wait and see... I was advised to wash the treatment area with alcohol-free baby products. Therefore I had switched from using my favourite Body Shop’ Passion Fruit body range and L’oreal Hair Care to Johnson’s baby milk bath and Johnson’s baby soft & shiny shampoo. Oh I smell like a baby! (Wish that my skin is as soft as a baby too...)

Avoid very hot or very cold water on the radiated area. Don’t use hair dryer or rub the treatment area too strongly with a towel. Also, I was asked not to wear ANY makeup. Going sans makeup? Oh bollocks!

I was also asked to avoid exposing myself to the sun. Sounds easy but I am the type of girl who believes that an umbrella served as a defense against the rain rather than the sun! As for clothing, I need to avoid tight collars (no round neck Ts for me) and wear loose fitting clothes.

Dental Care
It is very important to care for your teeth during treatment as radiotherapy to the head and neck area increase the chances of mouth infections and tooth decay. One thing that I really regret: Not seeing a dentist prior to starting my treatment! Why? Because once the ulcer “attacks”, it will be too late to see a dentist when all you need at that time are loads and loads of painkiller to ease the pain, trust me.

I was asked to use a really soft toothbrush to prevent gum disease and jaw infections. Initially I’d used the dental care set (includes mouthwash and toothpaste) that was given to me by Ms Eng during my first visit (for RT planning) - OralSeven. But later, I’d switched to Biotene (upon recommendation from Dr Kamal). I personally prefer Biotene to OralSeven.

Vs.

CHEMOTHERAPY CYCLE 2

November 30: I was up by 6.30am, trying to calm myself. I was so nervous, though this is going to be my second chemo session.

My status from FB the night before chemo:
"Feeling a bit nervous for my Chemo Cycle 2 tomorrow. Ya Allah, please give me the strength to go through this ordeal. Amen. On a positive note: Chemo Cycle 1 and Radiotherapy Week 1 Session 1 - 7 (out of 33) = DONE!!!"

I was accompanied by Mom and Sara for my second chemotherapy session. Before we left, Ibu had packed drinks and spaghetti for lunch, but this is no picnic.

Once I'd arrived, like usual, a complete blood count (CBCs) was performed prior to the treatment and my weight was also taken.

P.S.: Today, I had chosen Bed No. 13 as it's Azmir' favourite number!

My CBC result on 30 Nov 2010 (and will always be recorded in My Personal Chemotherapy Diary) :

• Hemoglobin (HgB) – 12.0 (Previous week: 12.4 - Decrease)
• White blood cells – 5.38 (Previous week: 5.58 - Decrease)
  
• Platelets – 261 (Previous week: 233 - Increase)
• Weight – 52.1kg (Previous week: 53.6kg - Decrease)
• Result = PROCEED!

Sara bought me a sunflower during chemo today. Why a sunflower? In the game Plants Vs. Zombies (my official chemo game), the sunflowers are the one that produce sunshine and to get more points and energy, we have to collect all the sunshine produced.

As she saw me feeling a bit down and uncomfortable (because of the administration of the Cisplatin - it gives me a tingling feeling 'down there'), she bought the sunflower and told me that I should 'produce a lot of sunshine and have a lot of energy'. Very thoughtful, in a kooky kind of way. Thank you my dear.

And of course, the 'cocktail' which includes pre-medications that quell nausea magically and the bag of poison - CISPLATIN.

WHAT HAPPENED DURING THE WEEKEND

I'd developed a small mouth ulcer on Friday night. I treated it with Bonjela and it seemed to go away, only to come back that weekend in different places! Within a short period, I had such a bad attack of ulcers over the weekend. The ulcers seemed to be everywhere! I'd decided to wait until Monday to see Dr Kamal. It was so bloody painful! Check out the picture below. I'm very sorry if the picture (of the ulcers) is disgusting.

P.S.: Thank you Nadia Suhaimi for the short but sweet catching up session at Tutti-Frutti Bukit Jelutong (Well, at that point of time, I can still eat frozen yogurt. Haha) on 1 Dec 2010. And a big thanks to my PwC colleagues - Hafizah Hamzah, Diyana Rabain, Megat, Nizam, Hafizan, Faizal Farid, Dzulfiqri and Dzulfiqar who came during the week. It really made my week!

WEEK 1: Radiotherapy Session 1 - 7 & Chemotherapy Cycle 1

November 19: Today I went to SDMC to be “zapped” in radiotherapy, the first of 33 sessions spread over a seven-week period, daily except for weekends and public holidays. I was accompanied by Azmir for my first session. He helped cheer me up with his silly jokes while taking videos and pictures of me throughout the session. The staff were courteous and encouraging – Ms Eng, Ms Lau, Mr Choo, Rizwan etc.

This is a picture of me taken in the middle of the week (Session 4). I will try to take pictures at the beginning of every week to note any side effects to my body.

Back view - Mid-week 1

Front view - Mid-week 1

RADIOTHERAPY WEEK 1 (SESSION 1 – 7)

Session 1 – 19 November 2010
Session 2 – 20 November 2010
Session 3 – 22 November 2010
Session 4 – 23 November 2010 with Chemotherapy
Session 5 – 24 November 2010
Session 6 – 25 November 2010
Session 7 – 26 November 2010

WHAT ACTUALLY HAPPEN IN THE RADIATION TREATMENT ROOM
My visit to the radiotherapy chamber was more or less the same: 20 minute each at most. The first week was a breeze and the treatment showed no severe side effects other than tiredness following the treatment. Dry mouth had started and I felt very thirsty - so liquids must be handy. I also experienced soreness in the throat.

First I was required to lie on the treatment tabletop. The radiotherapists then spent a lot of time aligning a green laser beam to the two “tattoo” marks on both my shoulder made during the planning stage. They measured with special rulers to the half milimetre, checking measurements they had on a Computer screen monitor both in the room and outside the treatment room at their workstations. The measurements were done in the planning stage in the Simulator Room.

Once they got the alignment correct, they would fit in the mask and fixed it onto the treatment tabletop. There were so many masks in the room! (see picture below) They will then leave me alone in the room for the X-ray treatment first. Outside they have a monitor of the room focused on the treatment bed; only the radiotherapist can see me in the room. After the X-ray was taken, they would come in and tell me that the Radiotherapy session will begin soon.

I had to keep perfectly still when waiting for the radiation beam. About a minute or two after they leave the room the treatment area (my neck) receives the radiation as they coordinate their computer outside. The noise is so loud and sounds like a deep but resonating high frequency. I hardly breathe when this happens and will recite Surah Al-Inshirah repeatedly to comfort myself. This surah had been my Cancer Mantra throughout my Radiotherapy sessions. They say you don’t feel anything during the radiation beam but personally I think that on some occasions I’d felt an awareness that something was happening, like a sensation of vibrating penetration. But it does not hurt during treatment.

Then the radiotherapist will come back and say they are done for the day and would clean the markings they made earlier with alcohol prep pads. Sounds simple, really.

CHEMOTHERAPY CYCLE 1

‘Cycle’ used to be such an innocent word for me. But with my treatment being administered in cycles (six of them), the word now connotes many things – ups and downs, highs and lows… and doing things over and over. Try to imagine a roller coaster with six gut-wrenching peaks and drops, and you are seated in the front for its first free-fall - that sums up exactly how I felt about chemo.

Chemo is typically given in cycles, with rest periods between the cycles. This allows the cancer cells to be attacked at their most vulnerable times, and allows the body’s normal cells time to recover from the damage.

The cycle begins...

November 23: I was accompanied by Mom and Sara for my first chemotherapy session. We were at the door of the SDMC Cancer Day Care at 8am and already there was a crowd. Prior to the treatment, complete blood counts, or CBCs were performed to check the number of each type of blood cell circulating in the body. CBC notes the red blood count, platelets and white blood count. My weight was also taken as it is vital that I maintain a healthy weight throughout my treatment.

Normal ranges for CBCs:

• Hemoglobin (HgB) – Normal (Female): 12 - 16 g/dL
• White blood cells – Normal (Female): 4-11 k/ul
  
• Platelets – Normal: 150 to 400 ('000) cells/mm3
  
• Weight – Not less than 50kg

My CBC result on 23 Nov 2010 (and will always be recorded in My Personal Chemotherapy Diary) :

• Hemoglobin (HgB) – 12.4
• White blood cells – 5.58
  
• Platelets – 233
• Weight – 53.6kg
• Result = PROCEED!

Once getting the green light (from my CBC), Dr Kamal (my oncologist) prescribed me with an antiemetic (anti-nausea) drug: Emend. I was asked to take the 125mg capsule one hour before the start of my chemotherapy. While waiting for the treatment to start, I spent my time playing Plants Vs. Zombies on my laptop and getting to know the other patients and their caregivers. And as expected, I was the youngest in Day Care that day, no surprises there :)

By 10.30am, I went on the drip – Cisplatin (50mg) and I felt a bit emotional as the bag of ‘poison’ emptied into my veins. The procedure stretched to four hours because precautions were taken and the drip was adjusted to a slow speed. It turns out to be an all-day affair and it was past 5pm by the time we finished (including radiotherapy Session 4 later that day).

I was exhausted as the chemicals kicked in and slept immediately after dinner.

The first cycle felt like a breeze, until the next day when I felt like life was being drained out of me. The main challenge was to combat nausea and to continuously eat as I had really lost my appetite (the pre-cancer Aida only eats twice a day and now I have to eat 5x a day!). I am grateful that I have my loved ones to go through this ordeal. I wouldn’t have the courage to go through this alone.

Treatment Stage - Radiotherapy Planning

November 3: Today was my first visit with Mom to the oncologist, Dr Kamal upon referral from Dr Amin. (Apparently Dr Ahmad Kamal Mohamed – Consultant Clinical Oncologist and Radiotherapist of Sime Darby Medical Centre Subang Jaya was Dr Amin’ senior back in his UKM days). Upon learning of my case, Dr Kamal had suggested the TomoTherapy®-based IMRT (Intensity-Modulated Radiation Therapy) with concurrent cisplatin chemotherapy, he felt very strong about it - to reduce the chance of recurrence. Plus, there's only so many operation one neck can sustain (and I had two already!) - it's best to do everything to avoid having to have any more. I was shocked to hear the word ‘chemo’. He advised us that some had refused it and had done okay, but that I would possibly always wonder if I should have; especially if there was a recurrence later on. He explained that the rationale for combining chemotherapy and radiotherapy is because the chemotherapy acts as a sensitizer to the radiotherapy by sterilizing micrometastatic disease outside of the radiation fields and decreasing any tumour mass, which leads to improved blood supply and reoxygenation. TomoTherapy® is a very new treatment and not widely available in Malaysia - there are only TWO treatment centre in Malaysia – Prince Court Medical Centre and Sime Darby Medical Centre. Guess we are at the right place!

Radiotherapy primarily works by damaging the DNA of cancer cells. It is often used as an adjuvant to surgery in the head and neck area to treat areas at high risk for disease spread. It is particularly effective in sterilizing small numbers of tumour cells left behind after surgery. While there have been no randomized trials that directly test how effective this adjuvant treatment is, there is historical data that shows for properly selected patients, it reduces the risk of the tumor recurring.

I’d told Dr Kamal about my ICAEW exam this December and asked him whether it is possible for me to sit for the exams. He advised me not to; as the side effects of radiotherapy will only be felt in the second week onwards. So as for now, I am still undecided on the papers I will take this December. My radiotherapy is scheduled to start on November 18 (a day after Raya Haji, thank God!) for 30 sessions every day (excluding weekends). Phew, what a way to end 2010! I was asked to come again next Monday for my Radiotherapy planning.

November 8: Mom, Dad and Sara accompanied me to my Radiotherapy Planning at SDMC today. The radiotherapy assistant, Miss Eng greeted us and explained what will occur during the planning session and told me that from now on, she will be with me through my anxiety-filled first week all the way up to my bittersweet final week. Her remark puts a smile on my face. Later, I was given my very own personal radiotherapy diary to record all my 30 sessions of radiotherapy.

The picture above was taken in front of the Cancer & Radiosurgery Centre. Anyway, I have a funny story to share. Or rather, an ironic one. Few months ago, back in August 2010, I was in the Sime Darby Medical Centre Subang Jaya Sdn Bhd audit team, auditing the hospital for almost two months. During the time, I had to perform a physical sighting on the hospital' newly acquired equipments. So there I was, selecting samples to sight and of course I had chosen the very expensive TomoTherapy® Hi-Art treatment system as one of my sample - it cost SDMC a whooping RM15 million! So being the auditor that I am, browsing through TomoTherapy® Hi-Art' capital expenditure request form, board minutes approval for the purchase, etc., I wondered why do they need such an expensive machine, it's going to be obsolete anyway in the near future. Well, now I know why...... :)

The planning session today is a very important part of radiotherapy as careful planning ensures the radiotherapy rays are aimed precisely at the cancer and cause the least possible damage to the surrounding healthy tissues. The planning was done by a senior therapy radiographer, Miss Lau.

During the treatment planning, I was asked to lie on a fairly hard table in the Simulator Room. Miss Eng and another radiotherapy assistant, Rizwan helped adjusted my head rest and asked me every now and then whether or not I felt uncomfortable. Then I had to lie VERY still on the Simulator for a few minutes so that accurate measurements can be taken and my exact position was recorded; they’d made a few marks on my face, neck and shoulder with permanent marker ink. It felt as if I'm doing planning for cosmetic surgery!

Me in the Simulator Room.

With Miss Lau - Senior Therapy Radiographer.

It is important that I lie still during the treatment, even more important in the case of head and neck area. This is because even a tiny movement could change the area that gets treated. To help ensure that I am positioned in exactly the same place every time I am treated, a radiotherapy mask is custom-made for me to be worn during the treatment as it reduces the possibility of any movement while radiotherapy is given. The mask will be placed on my face and fixed to the table so that my head doesn’t move during the radiotherapy. Before the mask can be made, my head/neck position was checked on the Simulator. Once my head position had been confirmed the mask was made in the Mould Room by Miss Lau.

The mask was made from clear plastic and covered my head, face and shoulders during the treatment. This technique uses a special kind of plastic. The plastic was heated in warm water so that it becomes soft and pliable. I was asked to lie in the same position I’d adopted in the Simulator and then the warm, wet, perforated plastic was put onto my face and pressed into the contours of my face. There were 4 people in the room (including Miss Lau and Miss Eng) making sure that the mask was fixed onto the treatment tabletop and fitted into the contours and around the desired area. A hole for my mouth was made – I was able to breathe normally, though I do feel anxious and worried about the procedure (but still I need to put a mouthpiece, which was moulded by Miss Lau into my mouth every time I go for treatment). The mask was then left for a short time to cool (approximately 15 minutes) and after the mask became hard, it was then removed. Voila! Now I have a mask that is ready to be used when I have my treatment.

My mouthpiece with my teeth markings.

My cool, custom-made mask!

In goes the mouthpiece.

After that, Miss Lau made two “tattoo” marks on both my shoulder. These were permanent, but they are the size of a pinpoint (it looks like a mole!). According to her, this was a good way of making sure that my body is symmetrical and aligned correctly for treatment.

All in all, the whole procedure took around two hours and was painless though it was quite messy.

Before I left, I was given my next appointment schedule: November 18, 2010 – My first radiotherapy session!

After the Planning session - mask marks on my forehead.