Sunday, May 3, 2009
Out of NICU
My left arm is now swollen, probably stage 1 lymphoedema. Will get it wrapped today, or tomorrow...
And my cancer is getting worse by the minute. Lots of little nodules , tons of them actually, are comfortably making my left chest their home. The skin has gotten red and it's warm to the touch, which means the cancer is aggressively attacking all the healthy cells. I'm going for my radiotherapy appointment tomorrow, and onco doc has promised to see me then. I'm thinking of an earlier chemo...
To all friends and readers, thanks for your support, because it does mean a lot to me...
Friday, May 1, 2009
Qays is free of infection
He is in his second dose of Indomethacin today. According to the nurse in charge, he would be taking the drug for 6 days, then the PDA would be reviewed. Hopefully it 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.
Sometimes I feel like I am asking too much from God, but there's nothing else that I could do at this point.
On Wednesday, for the first time, I held my son in my arms. Two weeks after he was born...
There's no words to describe how I feel. I so wanted to kiss him but I was scared that I might cause him to have another infection, so I had to be content with just rocking him in my arms for about 15 seconds while the kind-hearted nurse cleaned his incubator. I was even afraid to talk, in case my breath carry germs...
Then last night the same nurse allowed me to hold him again...for about 10 seconds...but those were the best seconds of my life...
I still cry...but I'm taking this better now.
I want my son to recover soon, so he could come home and be with us...because I don't know how much time I have left...since little nodules have merrily emerged where my left breast used to be...and nausea a constant companion...
Thursday, April 23, 2009
Qays has an infection...
At the moment he looks tired, but he appears better than yestesday. He has started taking 8ml of milk every 3 hours.
I had my chest x-rayed today, thanks to Dr Eeson of O&G, HKL. If he leaves it to the Oncology, it'd probably never happen. I did take a look at the film...the left lung doesn't look good. In fact, it looks pretty bad...
I hang on to my husband for strength. He is taking this better than I do, thinking positively most of the time. He truly believes that the antibiotics will work for Qays, and chemo will work for me.
Friends and readers...do pray for us
Wednesday, April 22, 2009
Coping...
Qays didn't respond well to indomethacin. It played havoc with his kidneys. And now they suspected him of having an infection, which is no surprise to me because he is placed with two other premature babies who are having an infection. Last night he was taken off milk because his tummy suddenly couldn't process 14ml of milk every 3 hours. Today the doctors restart his diet with a mere 5ml/ 3 hours.
The next plan is to stabilize his bloood count and blood gas, and retry indomethacin.
I finally mentioned these little nodules that emerged on my mastectomy site to the O&G doctors who immediately notified the surgical team. My appointment with the oncology team has been carried foward, for them to do all sorts of scans and restage my condition. I'll probably start chemo sooner than expected.
Anything for my children.
My biggest concern is I may not be able to visit my son 5 times a day like I'm doing now.
But I've come across some of God's gifts...a baby who was born at 24 weeks gestation and weighted 500gm was finally discharged from the NICU after 4 months, a 28-week baby weighted 780gm who are still surviving...
I will get through this. God will help me.
Monday, April 20, 2009
From The Hospital...
I was given spinal anesthetic during the c-sec, so I was happy to hear Qays' screamed the moment he was born. It was beautiful. Then he was taken away and I didn't get to see him until the day after...
He was diagnosed with Respiratory Depressed Syndrome, which is expected in premature babies, but it pisses me off because I did take the Dexa shots twice! But that wasn't all. He also has a condition called PDA, Patent Ductal Asteriosus. The hole in is heart which is supposed to close after birth did not, flooding his left lung with poor oxygen, making it difficult to breathe.
I have confronted a lot in my life. I have cancer cells in my body right this minute, multiplying happily. But even that doesn't make me as depressed as I am now with my son's survival uncertain.
Today he started on Indomethacin, a type of drug that could and in his case WILL shrink and eventually close the hole in his heart.
But Qays is beautiful, as beautiful as the sound of his name. He's fair with sharp nose (unlike mine which resembles jambu air at its best), and long fingers and toes.
I love him to pieces already...
Do pray for us, for his complete recovery.
Sunday, April 12, 2009
Another Aunt Joins the Club!
When I was tested positive BRCA1, the darn breast cancer gene that happily carries along ovarian cancer in females and prostate cancer in males, I told my aunts on my father's side, the hero who passes me this adventurous life, to get tested too. Aunty Enon told me that she doesn't want to get tested (despite the tumor that she has sitting on her ovary right this minute) because she doesn't want to know, because knowing means she her children and grandchildren are affected too.
What kind of an argument is that? Even if you don't get tested, if it's in your gene, there is a 50% chance that you have already passed it on to them anyway!! For me personally, it's better to know so that you can plan your life accordingly. The moment I was positive for BRCA1, I quickly surveyed for a house to buy, and in my hurry I decided on a house I probably wouldn't buy had I have more time in my hand. I also decided not to wait for a second child, because my body might give up on me anytime. And between all the rush, the cancer decides to show up again. I beat it only by a few months...
Anyway, although organ mets is something all cancer patients fear, I have come across people who live with bone and/or lung mets for as long as 9 nine years..and still living. And these people withstand chemo like it were income taxes - something we hate but has to be done anyway. I sure hope I could be as strong as they are.
Well, I'm off to hospital tomorrow, the c-sec is scheduled for Wednesday 15th. I'm not worried about the surgery itself, because it'd be my fifth if we count the oral surgery to extract four teeth in 2001. That was the first time I was put under GA. But I'm worried that Qays is not yet ready to stand on his own. These past 32 weeks, I have been breathing and eating for the two of us. Come Wednesday, he's on his own. But I have to have faith, because this is something that I have to do...
Pray for us...
Saturday, April 11, 2009
Nice People
Sunday, April 5, 2009
Darn Dexa!!!
Well, it could be due to something else, you can never be sure with cancer cells in your body. It could just be them zapping up all the nutrients I so eagerly consumed for the sake of my baby. But there I was lying down on the couch like I'm already on chemo, and breaking my promise to my little girl that we would play with water colours today...
And Qistina, my angle, 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. She would repeat to me, as she softly touches the place where my left breast used to be and said "Hurt here? Not hurt here?" as she moved her little fingers to my reconstructed right breast. She knows that she is forbidden from asking me to carry her around in my arms, but what mother could resist such pleasure so I carry her anyway, from time to time when my body could handle it and when the father is not around. Then she would ask me to carry her on my good side, because the left side hurt. And she never asks me for a ride on the back either...
How I wish for all these restrictions and limitations to be over so my life could resume. I have a huge mountain range in front of me, but I'm not sure if I'm all equipped to conquer it all.
Thursday, April 2, 2009
Qays Aiden
I went to see my gynae today for a detail scan. Qays is in perfect condition. His lungs and kidneys and other internal organs looked good. The blood flow seemed ok too, as did his heartbeat. He weighs approximately 1.6kg now, plus /minus 100g. The doc said it'd be nice if he could weigh at least 1.8kg at 32 weeks. Well, I'm working towards 2 kg actually. I'll deal with the excess fat later. Let's just hope chemo will help me shed some of the pounds. But looking back, that's kind of wishful thinking. I gained 8 to 10 kg after my last chemo in 2004. Darn steroids!!!
Anyway, I was forbidden from going to work beginning 8th April, was ordered some serious rest. I'll be admitted on the 14th and will have the c-sec on the 15th.
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 (uweekk!!! Sorry, can't help myself) CHEMO!!!!
Sunday, March 29, 2009
How I Missed School!
After 5 weeks of rest for the mastectomy, I wanted to return to work. It wouldn't be bad as I'm still in the 'pool' for teachers with chronic illnesses, which means I don't have to do anything but turn up for school and be the envy of every other stressed out, sweaty, on-the-verge-of-a nervous-breakdown teachers. But being the considerable person that I am I always asked for classes to teach, although I gladly refused any co-curricular activities that would require me to come early or stay back later.
In 2006, when I was first dumped in the pool, I taught 15 hours a week. Then in 2007, I taught 15 hours of English and 3 hours of something else I couldn't remember. In 2008 I had 15 hours of English and 10 hours of ICTL. Once I was diagnosed again, all the hours were taken away, but the administration has been so wonderful that they let me take back 2 of my English classes if I ever decided to come and teach.
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 do this because 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 Qi-Cong way and visualize the O2 passing through every fiber of my being and straight to my unborn baby. 10 years ago, breathing was something I took for granted.
Anyway, I'm enjoying school now, as much as I can. Although the students piss me off at times, they are also a source of pleasure and for now, one of the keys to my survival...
Friday, March 27, 2009
Funny, funny stuff....
Anyway, I frantically searched for the thing but it was nowhere to be seen. I ransacked my entire room but it seemed to have vanished into thin air. The shoulder pads and kerchiefs were strewn all over the dressing table, but the pocket itself was gone, kidnapped by aliens. I screamed that I had to go to school tomorrow and I couldn't possibly do so with ....one reconstructed breast on the right and a flat chest on the left. None of the students could take me seriously if I did!!
Then my eyes landed on my Mom's inner head scarf and decided to stuff that into my bra instead. But experience have taught me that its lack of weight would make it move up and up and eventually out of the bra cup. I tried weighing it down with shillings...but the noise they make...and the students may wonder why my breast is producing the sounds of a piggy bank being shaken every time I move. At the last minute I thought of the marbles we use to play Congkak. So I stole a few from downstairs and tied them to the scarf using a rubber band, making sure they didn't produce any attention grabbing sounds. They didn't...well, not much. And it looked good too...as long as the head scarf didn't peek out because the fluorescent yellow could be seen from Antartica...
Well, I'm thinking of going out to buy some proper bras for breast cancer patients tomorrow...
If I knew I was going to get breast cancer again, I would've saved myself the trouble of going through the 12-hour reconstruction!!! Then I wouldn't have any need to stuff my bra everyday...or buy any bra whatsoever...
Sunday, March 22, 2009
Friends???
Then walked in this teacher, whom nobody talks to much because she builds this invisible wall around her that warns others of her reluctance to socialize. She only talks to a previlege few, and that day I was apparently the VIP. She landed on the chair opposite mine eating a bit of this and that, making faces at everything that touched her palate. I ignored her, because I have learned that you only speak to her when spoken to.
Other teachers came in and we chatted and then they left, leaving us alone again. Suddenly she granted me with an exchange. She stood up, walked over to my side, grabbed my upper arm and said "Why do you suddenly got fat, ah?"
I was speechless, uncertain how to respond. Then she she grabbed the other arm "See, fat here too".
"Errm..., I'm pregnant? I always bloat like a hippo during pregnancy".
She looked surprise to know that I was expecting, "Maybe, but you have fat all over you".
I rest my case.
Another 'friend' came to visit me at home after my mastectomy. She was surprised to see that I had my hair cut short. The last time I was hospitalised I had a head full of wavy hair down beyond my shoulders and after the surgery I woke up with dried up blood matting my hair down to the scalp. So I learned my lesson this time, what with chemo coming up there's really no need to worship a few hair strands. Laughing aloud, probably thinking it was funny, she recalled my intentions of having my hair highlighted and permed but only ended up with a boy cut.
I could ignore a remark like that to a mere oversight, a short lapse in sensitivity, if she stopped there. but she kept on giggling and pointing fingers at my head that it began to irritate me.
"XXXXX, I did get the highlight and the perm, remember? You have the picture in your mobile!!"
"Yeah, yeah, but funny lah after all that you end up with this", she insisted.
"I'm going bald soon".
"Still..."...(laugh, laugh, laugh)
And this came from a woman who was not few months ago came complaining to me that during a pot luck, while she was filling up her two plates with food, someone commented on its amount that started to build up like the Himalayas. And this came from friend who constantly complains that people always make fun of her big tummy, as she always look pregnant when she isn't, and look even terrifying when she does. I mean, I would expect her to have some sensitivity towards others as she is obviously so in tuned with her own predicament.
But life would be colourless without such irritations to irk you. It makes me realise what a nice person I am...and I'm thankful...
Tuesday, March 17, 2009
After Surgery...
Then on the 11th of March I went to see my Onco, who was never around the first time I battled cancer in 2004. I brought her an update from Ms Aina because surprise, surprise... no Onco turned 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, and chemo about 2 weeks after that. After I voiced my concerned about the baby being borned at 3o weeks gestation to the onco...with the risks of lungs failure, infection, brain haemorrhage, apnea...she agreed to let the delivery be delayed to 32 weeks. "At patient preference" she told her MO 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 would have preferred to have chemo start earlier, probably 3 weeks after c-sec, because as always I'll recover fast. but the Onco couldn't know that could she? Because she wasn't always around...
A week may not seem much of a wait to anybody else but to a cancer patient...they are days worth counting.
I remembered when I went to Kinokuniya in KLCC with Aishah (HI CHAH!!) to look for Chicken Soup for the Breast Cancer Survivors' Soul, I came across an interesting book I so wanted to read but dare not buy. The title runs something like What Your Doctors Do Not Tell You. I flipped to the pages that concern me and it asks a very thought- provoking question...
"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 5-year mark, you are considered "cured", which is stupid as cancer cannot be cured, unlike chicken pox!! I don't believe in that shit much because I've met people who relapsed after 7 and 10 years.
The book insists that chemo or whatever drug is available out there is only able to put you in remission for 5 years, if you are lucky. Most cancer patients die of cancer, sooner or later, depending on which is faster... the car speeding down the road or the cancer cells.
I personally do not care which comes first, as long as it doesn't come anytime soon. I don't mind dying, but I worry about my children. It's damn difficult not to believe in statistics with 11 lymph node positive for regional mets... and I keep hoping for a miracle...for me...
Sunday, March 15, 2009
The Recovery
I remember when I was recuperating from my DIEP-flap at the plastic surgery ward in 2007, the help who delivered our breakfast whispered to me, good intentionally mind you..."I put these eggs here because they tell me too. Don't eat them if you want to heal quickly. They are not good if you just had an operation. They will leave puss and blood that'll look worse than a diabetic foot". Her eyes pitily wandered over the two tubes than came out of my right breast and the other two from my tummy. I bet she gave that advice to everyone in the ward because I sure could see two uneaten eggs on every tray, except mine.
The DIEP-flap surgery took approximately 12 hours and I was only woken up the next day. After I had the morphine taken off two days later, I noticed a man opposite my bed, his left foot wrapped and dangled from rods screwed to the bed. His wife came every day, feeding him, changing him. I learned that he was a policeman whose foot got run over by a lorry, wrecking the bones and nerves. He was there to try and get the foot fix , but by the look of him you would have thought he was the one with cancer, not me. He was so down and depressed he didn't talk to anyone, or make eye contact with anyone. The rest of us were happily calling McDonald's and Pizza Hut for delivery.
Unbeknown to me, the wife and the mother who came to visit him were watching me eat. So one day the wife approached me and asked why did I eat everything with little consideration for its effects on the wounds. So I said I did care...that's why I ate everything. I just had to recover quickly to go back to my daughter.
Then of course I had to explain about food pyramid, vitamins and minerals, like I was teaching Form 1 Physical Ed. I guess she told the hubby because the next day he sat up and began smiling to me, and ate everything. The patient before me who had free DIEP-flap was warded for 52 days. I was discharged after 10 days. That's the power of food...
But I digress...
This time round recovery was slower than 2004, but the scar that was left behind was
less horrendous than the previous one. My left shoulder was tense for a couple of weeks but massages took care of that. There was more fluid to be drained this time and the drainage tubes were real pain in the ass. Being pregnant made it worse. I couldn't lie on my back because I got breathless and I couldn't lie on my left because of the darn tubes. So I had to be content with facing the sink on my right day in day out, and that resulted in even worse sore than the surgery itself.
Having cancer alone is hard enough on
anybody, but to be pregnant at the same time...that requires super power to confront. But seriously, my daughter helps a lot. Although most of my energy is spent on her, she loves to hug me and give me kisses and would always want some parts of her body to be touching mine. That alone is enough to cure me of all the illnesses in the world.
Saturday, March 14, 2009
The Inevitable....
Anyway, living with cancer inside you is like having a time bomb waiting to explode. Each day, a little of its toxicity leaks into your blood stream and when enough has circulated, either through the lympathic system or the vascular system, you turn into a mutant. Not nice ones like in Mutant X, but gory ones that everybody is eager to terminate.
So I quickly asked Ms Aina when could I get rid of this damnation and she looked relieved that I was so eger to do this. I imagined she came across enough patients who wanted delay so they could visit some shamans in some remote area of Kelantan who could miraculously transfer the cancerous cells to chickens or white breads. Or maybe that herbal tonic so widely advertised in tabloids would help, because they have pictures to prove.
Not yours truly though. So the surgery was scheduled a week after t
he 10th March, because I had to see the Gynae first to ensure that Qays, that's the baby I'm carrying now, was just as ready for the surgery, which he was. Then I had to go and see the Lung Specialist, to get a lung function test done because my asthma got pretty bad. She gladly diagnosed me with bronchial asthma and put me on the preventer and reliever. Next I had to see the Anesthetist who assessed the reports done by the lung specialist and gynea and decided on the proper GA. I had never been so divided in my entire life. I was told that the GA could trigger an abortion. The Anesthetist couldn't make that clearer, and they made me sign forms for that. But the Gynea was confident that everything would go well, telling me that they see this all the time. I remembered thinking, as I was laid down on the operating table and all sorts of lines were connected to my hands and back, whether I should just bail out. As the Anesthetist injected the drugs that would put me to sleep into one of the lines, I screamed inside for everything to stop because the risk of losing the baby was suddenly too much to handle. The moment I was awakened from the GA, the first thing that I did was to grab my tummy to see if Qays was still there, and he was. Thank God!!
Unlike the first mastectomy in 2004, I didn't wake up puking green, bitter liquid. It was just like waking up from a deep sleep, and I could drink and eat soon after. But the recovery was worse, with soreness enveloping my entire left torso. But the thought of my daughter Qistina brought the best in me, and by the time dinner was served I could hold my left hand high above my head. Dr. Wilson chose just that momemnt to check on me and he was impressed, but probably concerned a bit because he quickly offered me painkillers, which I galantly refused. See, for this surgery, I didn't take painkillers at all. NOT ONE!
Later a nurse came and handed me a piece of paper and a pencil, for me to jot down the time each contraction occurs.
"What contractions?" I asked.
"Well, you baby of course", she calmly replied.
"Why? I don't feel any".
"Really? Because there were contractions during the op", she explained.
My heart almost stopped. I almost lost my baby. 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 carry inside my uterus. He was as strong as I was. We both survived the surgery.
Thank God.
Friday, March 13, 2009
Why The Long Silence...
Sunday, November 30, 2008
Life's Surprises...
Thursday, November 27, 2008
Hairy Matters
Anyway, baby is safe. I will begin the routine visit to the O&G next Tuesday.
Well, I'm thinking of getting a digital perm, whatever that means. I have a weird attachment to hair salons. I mean, I don't have a headfull of amazing looking hair. I used to, when I was younger. People complemented me on my hair over everything else before I completed puberty. But somewhere in my late teen, the volume just mysteriously disappeared and I was left with this limp looking hair that is not really straight, yet not curly either. It isn't even a good wave. It's just nothing and everything in between. So in my early twenties I had a full perm that made me look like ... to put it nicely, a poodle, or to put it not so nicely, like an ah so.
Then when the new millenium materialised and rebonding was in, I had my hair rebonded. It was okay then, because I weighted around 45-48kg back then. Then I got cancer, lost all my hair and the new one turned up very curly at the beginning, giving me nightmares on afro hair for months. Then it loosened up and I was left with a nice wave, which I stupidly straightened once influenced by a hairdresser who was probably on the verge of bankruptcy!!!
Everybody hated this hair, so I had it highlighted with brownish/blondish streaks. Now I'm thinking of digital perm. My students commented that I never have the same hairstyle for more than 6 months. As I admitted earlier, my hair is definitely NOT the most pleasing attribute of my persona but this obsession with hair salons should be stopped before I lost all my hair...and be bald again...and this time, maybe for good...
Wednesday, October 8, 2008
Wonderful Moments...
Anyway, I just came back from my husband’s hometown in Parit last Sunday, celebrating Raya. I had such a wonderful time I was reluctant to come back to reality. Across the road from his house is a place they call Padang on the bank of the long and winding Perak River which is exceptionally scenic and calming to the mind. Every time we go there, I swoon. Here in the city all I see when I look up would be high-rise condominiums and elevated highways with dust and smog doing waltz in the air 24/7…but over there…the clouds are like white puffs of cotton candy, creeping around the setting sun like slaves to the king…and the horizon…and the green, green grass where sheep graze freely…and oh the smell of pure air…
I took some photos with my camera phone but because it’s 3.2 megapix, they don’t do justice to the real McCoy. But still, here are some wonderful moments caught on well…memory card. Of course, I wasn’t on any of them being the one behind the lens, but my daughter is the one in red and black, lovingly held in the arms of the father. The others are nieces and nephews…

That's my miracle baby, in her most stylish poses with Maisara, a cousin, in a little town called Tronoh in Perak. The town looks a lot like a ghost town, with few cars in sight...none moving and a couple of elderly smoking cigarettes in front of shops that hardly sell anything. I mean, it looks like something that belongs to 1930s.
Sunday, September 21, 2008
Memory Fails Me...Again!!
If I turned left, I would see a nice, expensive-looking motel and across from it was the Botanic Garden where I spent quite a few of my weekends. I loved the old graveyard up there, the Northern Cemetery. It was like being in an old English horror flick: the cracked tombstones, the fallen branches and rotten leaves, the greyness and quiteness of the surrounding, the sudden sounds of big black birds flying off the old trees. But it was also calming and comforting...like listening to Tommy Page's songs while being wrapped in a thick duvan during the cold winter nights.
The cemetery was opened in 1872 for the people of Dunedin, and approximately 17700 people was buried there. If you go by the address, it was eerily situated in Lovelock Avenue. Many of Dunedin's and New Zealand's early settlers and founding residents, such as entrepreneur William Larnach (of Larnach Castle), Charles Speight (of the drinks Speights) and poet, legislator and journalist Thomas Bracken. The first burial occurred on 2/12/ 1872 when a little girl named Ada Massey was laid to rest in Plot 1 of Block 45. The last plot was sold in 1937. A variety of people were buried here because we could see some elaborated tombstones which, undoubtedly, housed the rich and famous. There were some without tombstones, and these were seen in the hard to get area, like the slopes. They probably belonged to the 'classless' people of New Zealand. Well, even in death social caste played its role.
I remembered New World supermarket being close by. Dunedin city was so small and trusting that they allow you to push the shopping cart home...just leave the address and they'd pick it up the next day!! But I can't remember anything beyond the supermarket...


