Part seventeen: A fighter to the end

Cotton candy in my mouth

The specific organism infecting Kriss was identified as the serratia which at it’s worst could cause meningitis which could result in sudden death. (inflammation of the protective membranes covering the brain and spinal cord,).

Serratia  is a coomon cause of hospital-acquired infections, especially in neonatal intensive care units (NICU). In order to eradicate Serratia outbreaks in NICUs, including all healthcare procedures such as hand washing with antiseptic gel, enhanced cleaning and disinfect of medical equipment and wards, use of single-patient medical instruments and earliest discharge of the infants from hospital.

Alhamdulillah the infection has cleared off. Thanks to friends and family members for their supports and prayers. Kriss had passed the critical stage.

He is now in his second dose of Indomethacin. According to the nurse in charge, he would be taking the drug for 6 days and the PDA would be reviewed soon. Hopefully the opening to his heart will be closed by then and he wouldn't need a second round of Indomethacin. If he does, there will be a two-week break before they could restart treatment.

Sometimes I feel like I am asking too much from God, but there's nothing else that I could do at this point except pray.

Sixteen hours ago...I held my son in my arms for the first time, two weeks after he was born... I had tears rolling down my cheeks. I was excited. I wanted to kiss him but I was scared that I might cause him to have another infection, so I had to be contented with just rocking him slowly in my arms for about 15 seconds while the kind-hearted nurse cleaned his incubator.

I held back the air I inhaled, in case my exhaled breath might infect him again. Then I slowly kissed both sides of his tiny cheeks...any mother hates seeing her infant ill. If I could just wave a wand to instantly heal his tiny body or take his place to free him from the discomfort…I wish. But his body must fight it out on his own.

These bonding moments together is like I am having cotton candy melting in my mouth. My heart feels at utmost peace.

The same nurse allowed me to hold him again...for about 10 seconds before I started writing again.here ... those moments were the best seconds of my life....

I still cry...but I'm taking this better now.

I hope Kriss would be discharge soon, so he could come home with us. I don't know how much time I have left...since little nodules have merrily emerged on my left chest where there used to be a bouncing breast onced.

Part sixteen: A fighter to the end

Think Positive

It is confirmed that Kriss has an infection...gram negative bacteria. These bacteria are extremely drug-resistant.

Despite advances in healthcare, neonatal sepsis, and especially that caused by Gram-negative rod bacteria, is a significant cause of morbidity and mortality among preterm and very low birth weight (VLBW).

The specific organism infecting Kriss will be identified in a couple of days. 

The other two babies with infection don't look good. One of them is so skinny you could thread her through a needle and the ribs bones extremely protruding. She barely moves. If Kriss is infected by the same organism suffered by the other two...It really scares me to even think about it.

.

At the moment he looks tired, but he looks better than yesterday. He has started taking 8ml of baby formula every 3 hours.

I had my chest x-rayed, thanks to Dr Eeson of O&G. If he leaves it to the Oncologist, I’d probably be in the long list wait which like it will never happen. I took a look at the film...the left lung doesn't look good. In fact, it looks pretty bad...

For most cancers, the grade is a measure of how abnormal the cancer cells look under the microscope. The grade is usually assigned by a number from I to IV. The lower the number, the more the cancer cells look like cells from normal tissue. Cancer staging will determine the severity to which cancer  cells has developed by spreading to other normal tissue.. 

It  Stage lV of most cancers patients is when the cancer has spread or is at a point when it cannot be successfully treated or cured in most people. But sometimes a successful treatment can be found, so a person with cancer should never give up,

I hang on to my husband for strength. He is absorbing the whole situation better than I do, thinking positively most of the time. He truly believes that the antibiotics will work well for Kriss, and chemo will do wonders for me.

...do pray for us

Part fifteen: A fighter to the end

God will help me.

I still cry daily......

Experiencing the birth of a premature or a sick new born, is so overwhelming and traumatic. Watching Kriss struggles to survive is extremely a difficult time for me and hubby. It’s like stepping into a foreign captivity where hope and faith keep us going on strong..

Kriss didn't react well to indomethacin. It causes havoc in his kidney and the doctors suspected him of having an infection too. I was not too surprise since he is placed together with two other premature babies who are having an infection. I wonder why he is not isolated from them on the first place.

Last night he was taken off milk because his tummy suddenly couldn't process the amount of 14ml baby formula fed every three hours. Today the doctors restart feeding him with 5ml baby formula every three hours.

The next plan is to stabilize his blood count and blood gas, and retry indomethacin.
Anything for him goes as long as it helps him to be better.

I have come across, surviving miracle babies. In one case, a baby who was born at 24 weeks gestation weighted 500gm is finally discharged from the NICU after 4 months intensive care and, a 28-week baby weighted 780gm who now is still in the same care unit struggling to survive...

My biggest concern is I may not be able to visit him five times daily like I used to now due to my deteriorating condition.

There are little nodules rapidly appearing on my mastectomy scared areas which I finally had to notify the O& G doctor who then promptly notify the surgical team. My appointment with the oncologist team is urgently carried forward. They scan and restage my condition for advance treatment. I'll probably start chemo treatment sooner than the initial planned.

God will help me pull through......

Part fourteen: A fighter to the end

The C-sec

The C-sec was on the 25th. I was not worried about the surgery then,since it was my fifth in five years, minus the oral surgery when I was eighteen to remove a set of wisdom teeth  that was causing problems since there was not enough space for them to grow at the back of my mouth, That was the first time I was put under GA.

What worried me the most was not knowing whether Kriss would be ready to stand on his own after his birth. These past 32 weeks, I have been breathing and eating for the two of us and after the C-sec would he be ready to start breathing on his own?. I prayed in good  faith he would..

I'm writing this on the hospital bed, feeling severely depressed. I cry at least 7 times a day. Some days I managed to keep my spirit high, stressing myself everything will turn out fine otherwise I am a wreck.

 
The passing by in the other world, it's a personal experience with no testimony to describe the exact feeling of that moment but I know that moment will come soon.  The problem is I don’t really know the exact time and how I will face that moment. 

When I was injected the spinal and epidural anesthetic before the C-sec, I firmly believed that my son would survive the ordeal.. The shots had numbed parts of my body as to block pain while I stayed awake and aware of the movement of my lower body and there was a sense of feeling and tugging during the surgery in progress.

Finally, I was feeling so happy when my baby screamed the moment he was born. It was a beautiful cry. He continued to cry, his voice echoed the operating room. All at once I had tears rolling down and completely forgotten all the pain I had to suffer during thirty two weeks of pregnancy.

He was then taken away and I didn't get to see him until a day after...

A few hours later he was diagnosed with Respiratory Depressed Syndrome, which is expected in premature babies. I was so unhappy and sad. It really pissed me off since my effort of enduring pain of the dexa shot twice failed to save my baby from suffering RDS.

 

But that wasn't all. He has a condition term as PDA (Patent Ductal Asteriosus). Before birth, these arteries are connected by a blood vessel ie ductus arteriosus, a vital part of fetal blood circulation. In new borns the DA closes within minutes or up to a few days.

However, in Kriss case the DA which is suppose to close after birth remains open (patent) flooding his left lungs with poor oxygen  create strain in the heart and increases the blood pressure making it difficult for him to breath.

I have struggle and confronted lots of obstacle in my life before. I have cancer cells in my body right this minute, multiplying happily. But even that doesn't make me as depressed as knowing the uncertainty of my son's survival..

Today he started on Indomethacin, a type of drug that could shrink and eventually close the hole in his heart.

But Kriss looks so beautiful, He's fair with sharp nose and long thin fingers and toes.

I love him to pieces already...

Do pray for us, for his complete recovery

Part thirteen: A fighter to the end

Kristina my little angel

When I revisited my gynecologist I was given a shot of dexamethasone on my right butt, and another same shot a few days later on my left. The purpose of the dexa jab is to accelerate maturation of fetal lungs, decrease number of neonates with respiratory distress syndrome and improves survival in preterm delivered neonates. Optimal gestational age for use of dexa therapy is 31 to 34 weeks of pregnancy

The first shot was pretty painful, but the second one I felt so much less pain. But what I did not expect was this lethargy that engulfed me the entire weekend plus headache, skin rash and depress.

It could be due to the side effect of the dexa or may be due to the uncontainable rapid multiple factor of the cancer cell zapping up all the nutrients I eagerly consumed for the sake of my unborn baby boy. I can never tell for sure of which causes the lethargy, but I was lying on the couch like I'm already on chemo treatment. I had to break a promise to my little girl that we would play with her color book.

My angle, Kristina has a lot to cope with at such a young age. She already understands what being sick means, because Mummy is always too tired or too sick to play with her. It was hard on me but I sense that sometimes she was depressed too.

She understands that sometime the priority for papa to be with mommy and the nights papa has to stay at the hospital, she was sad because she has to go to bed with no kiss from either of us. Mr. Hubby sees the importance that she shared her feelings with him about me, about herself as it will help her feels loved especially when most of her time was spend with her nanny at home when I stayed in hospital. She wanted to visit me as much as she could as I wish I could be with her as much as I could too.

As she softly touches the place where my left breast used to be, she would ask me "Hurt here? Not hurt here?" as she moved her little cute fingers on my reconstructed right breast. She knows too well that she is forbidden from asking me to lift her up and carry her in my arms. As a mother I could not resist such pleasure to be able to do it, so I did once a while lift her up and carry her anyway, especially when papa is not around.

How I wish for all these restrictions and limitations to be over soon so I could resume a normal life.

Part twelve: A fighter to the end.

Kriss Eden

Kriss Eden is the name I've been disputing for my baby boy against hubby. It's a pretty name and it’s easy to remember and Eden means heaven or paradise. I trained Kristina to say the name repeatedly to papa so papa won’t forget the name.  Finally Mr. Hubby agrees with the name but warned me, Eden means I/me/mine back in his home town in Gemenceh Negeri Sembilan.

I think a short, simple name is kinda suitable considering he'd be born premature. I hope Mr. Hubby won't trick me and register him as Kriss Oden or Kriss Udin which sounds more Malay. On second thought, maybe I should register him myself after he was born.....

I saw my gynae today for a detail scan. Kriss is in a good condition. His lungs and kidneys are good so are all the other internal organs. The blood flow is good and his heartbeat is normal. He weighs approximately 1.6 kg but doc said it would be great if he could weigh at least 1.8kg or more at 32 weeks of my pregnancy.

I could workout towards 2 kg approaching the targeted week and I will seriously deal with the excess fat later. ( I think I will join London 360 degree absolute curves) or let's just hope chemo will help me lose some kilogram.  

Kind of a wishful thinking since I gained 8 to 10 kg after doing my last chemo treatment for my first mastectomy. Bad steroids!!!

I was ordered to start sick leave beginning 20th September to seriously rest from doing any office work (Mr. Hubby I quit house work too) and I'll be admitted in the hospital on the 24^th September and  the C-sec will be on the 25th.

So, do pray for us my dear friends. I sure hope that this little fighter that has been busy stretching my once flat tummy post DIEP-flap to its limit, to be born strong and healthy. Then maybe I wouldn't have such a hard time dealing with (Puking!!!  Sorry guys, can't help myself) Come the CHEMO treatment next!

I love you so much Kriss. We will fight the battle together lil one!

Part eleven: A fighter to the end

Fake

This morning while I was getting ready for work Kristina, my daughter lost me my breast!!! It’s a fake one that was a “gift” after my previous breast reconstruction.

Each time I took off my bra, as always Kristina would grab my fake breast and would toyed and fooling it around with great admiration. She reminded me of my own experience when I was her age, I was  amazed at my grand dad’s magic teeth. He could pull it in and out off his gum with ease and brushed his teeth while singing. Years later did I know it was his fake teeth (denture).

My fake breast is actually a breast-shaped pocket filled with fiber and given free of charge by the Breast Cancer Welfare Association. An organization founded in 1986 by medical  specialists  to cater the need for peer support  of  women with breast cancer. It is a self supporting  body registered with the Registrar of Societies in Malaysia and a member of the International Union against Cancer (UICC) and Reach to Recovery International (RRI). 

After more than four years of usage, the fiber had gone flat so I refilled it with shoulder pads or wool since I ran out of the fiber refill which I bought for refilling the pocket nearly six months ago

I frantically ransacked my room for my fake breast but it was nowhere to be seen. The shoulder pads I use for refilling were strewn all over the dressing table, but the pocket itself was gone. I couldn't possibly go to work with one reconstructed breast on the right and a flat chest on the left.

If I knew, the cancer cell were going after my other breast I would've saved myself the trouble of going through the 12-hour breast reconstruction surgery and no need to stuff my bra before going to work.

Part eleven: A fighter to the end.

 What is a true friend?

At lunch break, on the second day at work, I was at the café and was happily gulping down my second glass of iced orange juice and the time was about 12.30 pm and walked in Lady Dee the PA to the CEO. Nobody talks much to her because she builds this invisible wall around her that warns others of her reluctance to socialize with any Tom, Dick or Harry. 

She only talks to a privilege few, and that day I was apparently the chosen one. She landed on the chair opposite mine munching a bit of this and that, making faces at everything that touched her palate. She really looks silly while at that. I ignored her, because I only speak when I am spoken to.

There were two other lady walked in and we chatted a bit and then they left and I was alone with LD once again. Suddenly she broke the ice, ask how I was progressing with job…blabla. She stood up, walked over to my side, grabbed my upper arm and said "Why do you suddenly got fat?"
 

I was speechless, uncertain what to say, how to react..

Then she she grabbed the other arm and said "See, fat here too".

"Errm... I always bloat like a hippo during pregnancy".
She looked surprise to know that I am pregnant.

"But you have fat all over you" she added

I rest my case.

Another 'friend' visited me at home after my mastectomy. She was surprised to see that I had my hair cut short. The last time she saw me, I had a head full of wavy hair at shoulder length. I decided to cut it short because when I woke up after the previous surgery, I had dried up blood matting my hair down to the scalp. So I learned my lesson well and with chemo treatment coming up it’s neat to keep my hair short.

Laughing aloud, probably thinking it was funny, she reminded me of my plan to perm and highlight my long hair but it all ended up with a boy cut style.

I could ignore her scornful and insensitive remark, if she kept it short and brief but she choose to repeat herself over again with giggles that sound stupid while pointing her ugly fingers at my head, it irritates me to the moon.

"I did highlight and then perm my hair, remember? You have the picture in your mobile!!"
"Yeah, yeah, but you look funny with this hair style now", she insisted.
"I'm going bald soon" I added.
"Still..." she continue to laugh louder

And these remarks came from a woman who came complaining to me, about someone commented the amount of food she was pilling up in her plates, not one but two were as high as the Himalayas during a pot luck gathering a few months back which she found annoying then. And this is the same lady who constantly complains that people always make fun of her big tummy that looks like she is forever pregnant when she actually is not. I would expect her to have some sensitivity towards others as she is obviously so in tuned with her own predicament.

I see friendship as standing back to back both facing the world and protecting each other, friends do not let friends get hurt. True or best friends never ever willfully hurts the other, a friend would rather die than hurt or blindside their friend.

But life would be colorless without such irk irritations.

It makes me realize what a nice person I am.

I'm thankful...

Part ten: A fighter to the end

 The Power of food

Making an incision in the skin, which typically requires cutting through all of the layers of the skin, can result in scarring, regardless of where the surgery is performed.

Of course, surgery performed by a less skilled surgeon may result in a greater degree of scarring, but in most cases the skill of the surgeon is not a factor on the amount of scarring that takes place.

Why is it the skill of the surgeon make a difference in many cases?

 It’s because they can’t control all factors that determine how badly you will scar. Certain factors are beyond control and these risk factors cannot be changed in determining how bad the scar is after surgery..

I was feeling grateful this time round, the scar was less horrendous compared to the first mastectomy I had four years ago. In addition my left shoulder was a bit tense for a few weeks and frequent massages makes it less tensed.

There was more fluid to be drained this time. The drainage tubes were giving me so much pain and being pregnant made it even worst. I couldn't lie on my back, it makes me breathless and I couldn't lay comfortably on my left because of the tubes. So I had to be contented looking at the sink on my right day after day, and lying in the same position, it’s giving me a bedsore worse than the surgery itself.

On the whole, the recovering process was okay. I don't believe in not eating certain food would supposedly delayed the healing progress. On the other hand I don't believe in eating a lot of certain food would speed up the healing progress.

Instead, I ate what I well felt like eating.

I remember when I was recuperating from my DIEP-flap (breast reconstruction) at the plastic surgery ward, the hospital attendant who delivered breakfast whispered to me with all her good good intention in mind...

"I put these eggs here because they tell me to but please don't eat them if you want to heal quickly. These eggs would make your wound worse if you eat them after an operation. They will leave puss mixed blood worse than a diabetic patient". She looked so concerned as her eyes wondered over the two tubes that came out of my right breast and the other two from my tummy. I bet she gave the same advice to other patient as well and I could see two uneaten eggs in each of their trays, except mine.

The DIEP-flap was a twelve hour surgery. I continued to sleep until I was only woken up by the nurse the next day. I had the morphine taken off two days later when I suddenly noticed a man opposite my bed, his left foot wrapped and dangled from rods screwed to the bed. His wife was with him. I noticed she visited him daily to feed and change his clothes. He is a traffic police officer whose foot got run over by a lorry, it wrecked and damaged completely the bones and nerves of his foot. He is waiting for his surgery.

By the worried look all over his face, visitors visiting, would be thinking he is the one with cancer, instead of me. He looked so down and depressed. He didn't talk to anyone, or make eye contact with anyone.

His wife and mom were watching me in horror when I cleaned up all the food in my tray. Curious, they ask, don’t I care of the bad effect of certain food I ate on the healing process of my surgical wounds. So I said I did care...that's why I ate everything. I just had to recover quickly to go back home to my daughter.

Then of course I had to explain about food pyramid, vitamins and minerals, like I was teaching them a Form 1 Physical Ed. I guess she told her hubby what I told them about the food and being positive because the next day he sat up and began smiling at me, and ate everything on his tray. The patient before me who had free DIEP-flap was in the same ward for 52 days. I was discharged after 10 days.

That's the power of food in the healing process......

Part nine: Afighter to the end.

Praying for a miracle.

Two weeks after surgery, there’s fluid accumulated under my arms causing my already flab arm to grow flabbier. So I had a medical officer withdrawing the fluid out using a syringe. I healed speedily after that.

The following week, I had an appointment with my Oncologist, she was never around during my first mastectomy and chemo treatment four years ago. I brought her an updated data of my medical file report from Ms Suina and again I felt dissapointed, there was no Onco that day, again as before she did not turn up for the combine meeting held a week prior. It was decided during the meeting that I was to have a C-sec at 30 weeks of my pregnancy, and followed by a chemo treatment about 2 weeks after.

In humans, birth normally occurs at a gestational age of about 40 weeks, though a normal range is from 38 to 42 weeks.  "Full-term" is the length of a complete pregnancy - 37 to 41 weeks. “Pre-term” means “before term”, that is a pregnancy less than 37 weeks. A preterm or premature baby is a baby born before 37 weeks of pregnancy. The body and organs of a preterm baby is not yet fully develop even though the outcomes for preterm babies survival are improving, but they are still at higher risk of having health problems.

It was only after I voiced out my concerns about the baby being born at 30 weeks of my pregnancy to the Oncologist in regards of my fear of the risks, the baby might end up suffering from lungs failure, infection, brain haemorrhage, apnea... She agreed to let the delivery be delayed at 32 weeks ofmy pregnancy. "At patient preference" she told her medical officer to write in my file, in case I brought it against her in the future. And chemo was to start 4 weeks after that.

I was also told that this is not a recurrence, but a second primary, meaning a new cancer unrelated to the first one although they appear to share most characteristics: grade 3 tumor, triple negative...

I preferred to have a chemo 3 weeks after my C-sec, knowing that I'll recover fast but the Oncologist, as always hardly around during combine meeting, how could she be able to really absorb the real situation I am in? A week may not seem much of a wait to anyone but to a cancer patient...they are days worth counting.

I was at Kinokuniya KLCC with Nina when I came across an interesting book I badly wanted to read but dare not buy, title “What Your Doctors Do Not Tell You”. I flipped to the pages relating to my ailment and there was this question from the book that enticed me…
"Why is it that a cancer patient survival is always evaluated at a five year time frame, not ten or twenty?"

The common believe is that if you pass the five-year mark, you are considered "cured", which is not true as cancers are not curable. I've met and seen cancer patient who fall back after seven and ten years of success treatments.

The book insists that chemo or whatever drug available is only able to put you in remission for five years, if you are lucky. Most cancer patients die of cancer, sooner or later.

I personally do not care which comes first, as long as it doesn't come anytime soon. I don't mind dying. What I worry most is the welfare of my children Kristina and the unborn baby Kriss. It's damn difficult not to believe in statistics with eleven lymph node positive for  metastatic cancer, I keep on hoping and praying for a miracle...

for me.... 

Part eight: A fighter to the end

The Surgery

The doctor had clearly discussed with me what the operation is likely to involve, the benefits and risks, the type of anaesthetic and any available alternative treatments. I had never been so divided in my entire life when I was told that the GA could trigger an abortion.

The Anesthetist couldn't make that clearer to me but I signed the consent form anyway and I had agreed to undergo the planned operation two hours before they pushed me in the operation theater. But my Gynea was affirmative and positive that everything would go well. I distinctively remembered as I was laid down on the operating table, all sorts of wires and tubes connected to my hands and to my back then suddenly there was an inner voice calling out for me to bail out.

When the Anesthetist injected the drug that would put me to sleep, my entire self was screaming inside for everything to halt all at once thinking of the risks of losing the baby was suddenly becoming too much for me to bear. The moment I was awakened from the GA, the first thing that I did was to touch and hold on my tummy to feel if he was still there. Thank God my baby is safe

The first mastectomy I had four years ago, I woke up puking greenish, bitter slimy watery mucous but this time round it was more like waking up from a deep sleep and I immediately felt like a drink and feeling so hungry that I wanted something to eat straight away soon after. 

But the recovery was worse, with soreness enveloping my entire body. But the thought of my daughter Kristina brought the best out in me, and by the time dinner was served I could hold my left hand high above my head. Dr. Wilson chose just that moment to check on me and he was so impressed by my progress to recovery, but probably a bit more concerned when he quickly offered me painkillers, which I absolutely refused.  

I didn't take painkillers at all for this surgery. NOT ONE!

A nurse came and handed me a piece of paper and a pencil, for me to jot down the time each contraction occurs.

Me: "What contractions?" .
Nurse: "Your baby ".
Me: "Why? I don't feel any"

Nurse: "Really? But there were contractions during the op".

My heartbeats almost stopped all at once. I almost lost my baby during the surgery. The next 48 hours was hell on earth. The pain was forgotten. I kept obsessing about the other life inside of me, about this piece of heaven that I am carrying in me. He was as strong as I was. We both survived the surgery.

What more can I say….Allahuakhbar

Alhamdulillah

Part seven: A fighter to the end.

 

My Mastectomy.

When news of my oncoming mastectomy leaked to friends and staff, most looked at me with great pity, which irritated me to the moon. I hated the look on some of their faces each time they talk and looked at me. I see that as an insincere and sad facial gimmicks as they tried to look like they really care when in reality they really don't care a bit. Some were pure sympathetic, but for the wrong reasons.

For these few, they might feel better to come to work with their forehead written in bright colors, "Pity her not having any breast after this" or "Hubby will sure wander and very soon stray away with other younger chicks". What they don't understand is, I don't have that firm hard nails attachment to my breasts as a symbol of feminine or a source of my self-esteem.

I am not one of those who like to flaunt my cleavage, or wear tight hugging fitting t-shirts to show off the C cups. In fact revealing them were more of an embarrassment, a nuisance which I rather have without.

Living with cancer cell inside me, is like living with a time bomb ready to ignite and explode anytime unexpectedly. Unlike normal cell cancer cells do not stop reproducing after they have doubled 50 or 60 times. This means that a cancer cell will go on doubling. So one cell becomes 2, then 4, then 8, then 16…and will continue to increase up to billions of copies of the original cancerous cell.

Cancer cells can lose and detached themselves from their neighbor and this is how cancer cell spread to other parts of the body. As they do not carry on maturing, they can become even less mature over time and with the rapid reproducing, it is not surprising that more of the genetic information in the cell can become lost. So the cells become more and more primitive and tend to reproduce more quickly and even more haphazardly.

Each day, with the existing rapid multiplication factors, it's making me feels more like I am becoming a mutant X.

So I asked Ms Suina when could we get rid of these damn cells. She looked so relieved to see I am so eager to quicken my treatment. She has come across patients who wanted to delay treatment so they could visit some remote shamans who they believed could miraculously transfer the cancerous cells to chickens or to even white breads or by drinking lots of herbal tonic so widely advertised which was proven effective for some.

I don’t belief in such craps

So the surgery was scheduled in a week time. First I see the Gynae to ensure the baby I'm carrying is as ready for the surgery as I am, which he was. Next to the Lung Specialist, to get a lung function test done due to my asthma which is getting bad. I was put on the preventer and reliever due to bronchial asthma. Then off I went to the Anesthetist who assessed reports by the lung specialist and gynea before deciding on the proper GA.

Part six: A fighter to the end

 

*The ability to write is an extreme privilege. It's a valuable gift and the ability to tell a story to someone else is even a greater gift. There are lots of things I wish I would have done, instead of just grudging and complaining about my own life.

For the past week I have been writing a story and am still at it even now, at my enthusiasms at it's brim, in my own inner voice, my mind but it was her story, her vision….it was her battle  against breast cancer.

Al-Fatihah.

May you rest in peace my friend….**

 

Love Your Job

 When I held the full responsibility of being a producer of this current project, my job would involved in every stage of the proposed programe overseeing the project from start to finish, both in the studio and on location. I am happy to be working with good and responsible team leaders, a group of   production assistants, coordinators and managers. After months of hard work I longed for a break. 

It was a long break indeed. After a 5 week of rest from the mastectomy, I wanted to return to work. It wouldn't be bad since I'm still in the 'pool' for staff with chronic illnesses, which means I don't have to do anything but turn up for work every day and be the envy of every other stressed out, profuse sweating, on the verge of a nervous-breakdown staff. But being the considerable person that I am I did what I could as usual I gladly come early or stay back later if the job required me to do so.

When I was first dumped in the pool, my working hours was shorten, most of my normal working hours were abruptly taken away, but I lead them to believe I could contribute more, so the administration has been so wonderful that they let me take back my usual normal working hours.

For the first 3 days, I went home vomiting...everything. I was breathless and tired that even lying down didn't help. But still I pushed myself to the limits since I badly I needed the mental stimulation. By the fourth day I was feeling better, especially once my brain had started focusing on the work at hand rather than the deteriorating condition of my physical body.

But I'm still breathless. Often times I have to consciously control my breathing, the Dr. Mahathir’s way, which for him breathing is an exercise.  I read this from one of his books not many years ago and visualize the O2 passing through every fiber of my being would go straight to my unborn baby. For so many years, breathing was something I took for granted.

I enjoyed my work tremendously…..

Yeah…..If you love your job, you don't have to work any single day of your life.

Part five: A fighter to the end

The Fear

When I was tested positive BRCA1, I told my aunts on my father's side (the hero who passes me this adventurous life) to get tested but she refused (despite the tumor in her ovary) because she feels knowing it is positive means she, her children and grandchildren will be affected too.

Even if she refused to be tested, if it's positive in her gene, there is a 50% chance that she has passed it on to them. Personally, I think it's better to know so that life could be planned accordingly. The moment I was BRCA1 positive, I bought a house for my daughter and decided not to have any more children, because my body might give up on me anytime. ·        

Family history: You are more likely to develop breast cancer if one or more members of your family have had breast, ovarian, uterine or colon cancer. Your risk is doubled if you have a first-degree relative (sister, mother, daughter) with the disease.

Anyway, although organ metastatic cancer is something all cancer patients fear, I have come across people who live with bone and/or lung metastatic cancer for as long as ten years and chemo for them is like income taxes - something we hate but has to be done anyway.

For your information metastatic cancer has the same name and the same type of cancer cells as the original, or primary, cancer. For example, breast cancer that spreads to the lung and forms a metastatic tumor is metastatic breast cancer, not lung cancer

When I heard the doctor say, 'I'm sorry; the test results show that you have cancer.' 

I heard nothing else. My mind went blank, and then I kept thinking, '

"No, there must be some mistake."

Knowing that you have cancer is a shock. You felt numb, frightened and angry. You might even be angry with God.

For most of us, the first few weeks after diagnosis are the hardest setback. After you hear the word "cancer," you may have trouble breathing or listening to what is being said and while at home you may have trouble thinking, eating, or sleeping.

You are afraid and  worried. It's scary to hear that you have cancer. You fear of being in pain, either from the cancer or the treatment, feeling sick and looking different as a result of your treatment, taking care of your family, paying your bills, keeping your job and finally dying

It is best to read as much as you can find about cancer. Imagining the worst is scarier than knowing what might happen. Having all the facts makes me less afraid.

Part four: A fighter to the end

Oh NO! Not again!

I wasn't busy but laziness just took over me, not the common laziness, it is more of I’m slower in my movement, being sluggish. I grew tired for no absolute reason, breathless after climbing up one flight of stairs. I prefer lying down dreamily on bed the whole day while enjoying the sight of ceilings rather than watching horizons with the beautiful sunset or sunrise which I used to love watching before. So here I am, like a zombie loving darkness.

Then the inevitable happened. I noticed two painful lumps at the lower outer quadrant of my left breast. After the failure to breastfeed my daughter, I was more determined to do it this time round for my son whom I am carrying now. I seriously thought the lumps was my breast changing naturally in preparation for nursing the baby. Since I’m around my third to fourth month of pregnancy I guess  the breast is starting to produce colostrums the special milk baby gets first starts nursing.

The pain in the lump increased but the shape weren't round but slightly oblong. They just felt like swollen veins. The thought of cancer did cross my mind but the last time when cancer strike the lump was round and it wasn't painful. The thought of having cancer again while pregnant was just too scary for me to imagine.

I had sleepless nights.  I heard an inner voice insisting that I go for an ultrasound soon. A week later I forced my way through an irritated clerk to get to the doctor, whom because of the long list of desperate patients, had to forego his Friday prayer.

The lumps looked suspicious, but they could be abcess the doctor told me. When he scanned the axillary lymph nodes that part was clear. (About 75% of lymph from the breast drains into the axillary lymph nodes, making them important in the diognasis of breast cancer)

I asked whether I need to speed up my biopsy (ultrasound guided biopsy) since my appointment is in a week time, or should I turn up for the check up on the appointment date itself. He told me it's up to me to decide. What kind of advice was that? I might as well ask the same advice from a monkey in the zoo. I hate doctors who gave hope when there was none...

What pushed me anyway was the fact that after many visits from mammogram to Papsmear, this time he refused payment. The ultrasound and consultation which cost RM120, were free of charge

Once home I called the hospital insisting on meeting my surgeon as soon as possible which was granted once I explained what the ultrasound result revealed. Ms.Suina was appalled that this should happened because when I saw her two months ago, I was great.

When I went for an ultrasound guided biopsy and by this time, there were already 3 lumps. And a week later, they all turned up positive for Infiltrating Ductal Carcinoma...or in layman's term, breast cancer.

And I thought NOT AGAIN!!! NOT NOW!!!!

Part three: A fighter to the end..

I am pregnant !!!!

When my menses were on time the last three consecutive months I would bitch for a day or two and scream mercilessly at myself….my failure. Again I was so upset when my menses suddenly decided to show up early last month. Then I caught the sight of my 2-year-old on her bike laughing happily and frustration and anger went away. Bless her....I'll try again.

And the fifth months of trying…. I’M PREGNANT!!!!! I could see the double lines…..double lines…yeay!. I don’t care with what the old folk were saying about not to get too excited as it’s still too early to be 100% sure of positive outcome. Anyway I had to share the good news with my husband so I could get off the chores of washing the dishes and doing laundry but over his own excitement, he told my dad after I sternly warned him not to let anyone else know just yet.

Yes I am so blessed with another miracle! Alhamdulillah...

My first pregnancy more than two years ago was an endless miracle for me. I conceived when the doctors told me it’s not possible for me to have a child because chemo might have killed all the ovum and besides, my uterus is retroverted for unknown reasons.

If I get lucky there is a possibility of the ovum surviving but doctor advised, I should not get pregnant because of the high risk of recurrence. I was even given a letter for a termination, should I decided to terminate the pregnancy. But I excitedly went through full term and gave birth to a beautiful baby girl that means the world to me..

After two years I got greedy.

There is a 50% chance of me passing mutated gene to my children, regardless of gender. After I did my DNA test I was told, I have three choices to pick one from.
1. Be contented with an only child and not to have any more ideas of having more children
2. Adopt
3. To hell with science and have as many babies as I want and leave it to GOD.

Bravely and contented I chosen no 3 for several other reasons..
1. I do not want my daughter to feel alone for being the only child if I chose not to conceive. My husband can remarry and have more children but I want my daughter to have a brother or sister of the same parents.
2. I inherited cancer of the ovaries and so I need to conceive NOW, while they are still healthy.


I thought I could never get pregnant again because my oncologist told me that the single ovum that resulted in my daughter might be the only one that survived the high dose chemo I went through...

Alhamdulillah…..thank God for answering my prayer.