Happy Birthday to me

Happily celebrated my birthday with some of my closest family yesterday. Mum, hubby, brother, aunt, cousins, niece and the newest addition to my family, Baby W. Had two cakes. One is my favourite Strawberry Shortcake from Bakerzinn and the other is a cute little organic cake that my cousin ordered for me. And beautiful bouquets of flowers from my beloved friends and relatives. Only thing that is driving me to tears is that my little munchkin Elis is far far away with my wonderful in laws and I am simply missing her like crazy. My aunts and my cousins were nice enough to take her from my in law’s and made a call to me so that I can listen to her cheery little voice wishing me Happy Birthday Mama. Wishing hard that I will be able to celebrate many many birthdays with my family for years and years to come.

Had lots and lots of Birthday wishes via SMS, facebook, emails, mail. Thank you very very much for making my day.

I have been drained ever since radiotherapy started. 10 sessions done so far. Doc is back from his US trip so we will be meeting him later. And I noticed that my memory is deteriorating. Let’s hope it’s not a permanent thing, otherwise, I might just walk past relatives and friends and be called a snob.

Baby W is squealing and cooing happily in his cot now. My pride and joy. If only Big Sister Elis is here too. Hubby and brother will be leaving for home soon. Sob! But I cannot ask for more. Just glad to be alive.

Wedding vows

I, take u, to be my wife/husband, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part.

Beautiful words most universally used to describe the very foundation of a marriage.

During my pregnancy on one of my trips down for chemo where hubby had to drive long distance as I was no longer allowed on the plane, I struck a conversation with hubby which should never have happened.  I blame it on the smart alec me for being so stupid.

Me:         I finally understand and appreciate the true meaning of ‘to have and to hold in sickness and in health’.

Hb:         I am terribly disappointed in you.

Me:         Why?  I think there are a lot of people who take for granted that weddings or marriage will turn out to be fairytales and may not truly understand the wedding vows and the meaning behind it until they go through it themselves.

Hb:         I was prepared for all these even when we were dating.  You were not?

I regretted my words and wished that I could take it back.  I just kept silent for fear I’d say the wrong words again.  Words can mean a lot and sometimes misunderstood.   I was simply thinking of how cancer has brought us closer, not that I was taking things for granted.  I read about cancer patients whose spouses left them as they could not cope.  And I was simply feeling thankful and blessed for having hubby by my side.  I should have kept my thoughts silent.  My hubby has been nothing but my greatest pillar of support not only for the past 9 long months, but the past two decades.  He was a friend that I could lean on during our teenage years, and a partner I could always count on when we became a couple 14 years ago. We have had our fair share of turmoils during our relationship and I was once naive enough to think that the years of a long distance relationship that we had was our toughest hurdle and that we could easily make it through anything after that.

Hubby has been a tremendous pillar of support in helping me face the painful reality of cancer.  In order for me to let go of things, he shoulders my burdens for me.  Everything comes to a halt for both of us, but as I have to let go and concentrate on getting well, he has to keep going, putting on shelf his hobbies and dreams, and on top of caring for me, he has to keep optimistic, working his job, worrying about the kids, family and finances,  taking care of countless other responsibilities, and worse of all, often with uncertainty of when this will all be over and the fear of losing me.  If he is not working, he would be constantly searching on information on the disease.  Or thinking of ways to occupy me and cheer me up.   Or go hunting for the healthiest and freshest food, even to the extent of asking and begging around for it.   And I feel tired for him.  Tired on the body and the soul, and helpless when he stands on the sideline watching me suffer, thinking that he is not doing enough for me.

Truth is, cancer is at times harder on the loved ones than on the patients.  So overwhelming that it can make the overburdened loved ones sick.  Hubby, for one, fell ill countless times during the past 9 months.  My Supermom has contracted an infection that just wouldn’t go away because of low immunity.  They forgot about themselves and chose to focus on me.

The past 9 months have been extremely tough on hubby.  On top of juggling with jobs and domestic related matters which were escalating exponentially all at the wrong time, he made sure he accompanied me on every single chemo sessions and appointments with the oncologist and fetal specialist, close to 600km away from home.  My chemo sessions were of 2-4 continuous days, every 3 weeks.  His presence soothed my pain and discomforts.  I depended on him for preparing my home cooked food, supporting me when I am too weak, administering medication, cleansing, putting me to sleep and watching out for my symptoms during my sleep.  He was needed there for major decisions with the doctors as I was losing my focus and judgment due to chemo.  When I delivered Baby W, he stayed with me in the hospital, cared for me as my movements were restricted due to the urine catheter and helped me with my short breastfeeding stint to produce as much colostrum as I could for Baby W who was then a preemie placed in the neonatal ICU for support.  He would wheel me down every few hours to the NICU to see our baby and share my heartaches.  And then saw me through further tests and scans again only few days after delivery and shared further heartaches again when it showed I relapsed during treatment. He accompanied me through further more intensive chemo regimes the following months which rendered me weaker and more dependent on him for support.  As my treatments became more intensive and complicated, my doctors preferred him around for major decisions and to understand clearly my state of disease.  And for the transplant,  due to the complexity of my case and the unconventional method of battle that we agreed to, he wanted and needed to be there for my daily clinic visits as my docs had even asked him to ‘stick around’.   He said he made a promise to my mother that he would take care of me for the rest of my life.  His action speaks louder than his words.  But right now, he has gone home today as work and home matters are escalating too and can no longer be handled from afar.

So whenever a person expresses concern for me,  I would rather he ask hubby how he is coping.  Just to show that he also understands the load hubby bears and recognizes that hubby is suffering in silence yet has to put on a brave and optimistic front for me and for the family.  Sometimes, the focus should be on him, not just me.

I just hope hubby don’t get burned out again.  I hope he eats well, sleeps well and do not forget to take care of himself too.

So in future, I must always remind myself to ask after a caregiver if I were to meet one.  Perhaps that will give a chance for the caregiver to open up and let loose, and reduce some of the mental stress that’s lingering around.

Having said that, I have just happily helped my Supermom dress up for a birthday dinner date at Shang with the Super-relatives and made her promise not to worry about me and my baby tonight and have a fabulous time.  She deserves a small little break and big big ones later on when I recover and cope.  I call her Supermom for a good reason.  She has been the greatest greatest pillar of support my entire life and both hubby and I could never have made it this far in the battle without her.  Now, that will be another story.

 

Trust

~You may be deceived if you trust too much, but you will live in torment if you do not trust enough~ Frank Cane

I always pray for guidance in life to be a better person.  Right now, I am certain I am being taught a lesson on trust.

Looking back, perhaps it’s due to past unpleasant experiences that moulded me into a fussy control freak that I believe I was as I strive for perfection in things that I do and do  not want to risk to be blame if things go wrong.  So I probably never really trusted anyone fully other than myself.  I never liked leaving anything to chance, as chance is the enemy.

Now when I am incapable of taking care of myself, hubby dearest has to help me sponge on places I am not allowed to shower over.  After the markers for RT purposes were placed on my body, I was terribly wary of him sponging me.  He shot back at me gently and said, ‘If you want me to help you, at least trust that I can do the job.’  Then, it struck me, it’s just a simple job, and yet I’m casting doubts at him.  Am I really that bad at trusting people?

I thought I have learned that I need to change my attitude and not to strive for perfection in everything in life.  I have learned to let go of a lot of things.  But it looks like I am not exactly practising the talk in my daily life.  What a hypocrite I am.

And then it struck me again, why a lesson on trust now?  Today is Day 16 of my transplant and we all know that my baby stem cells are entirely my brother’s.  His soldiers were sent to help me fight.  So if I want his help, I have to trust his troop to do the job.  My head has been unconsciously filled with ‘what ifs’ and deep down, I am getting a little paranoid on the graft vs host disease and graft vs tumour effect.  Now imagine my body recognises my thoughts and fears the soldiers and in turn affects the confidence and performance of the soldiers and complicate matters in the camp.  Wouldn’t that make me the instigator?

In times of uncertainty and despair, we can choose to trust and let go of our fear and open doors to unlimited possibilities.

So I am going to stop fearing GVHD and have complete faith and trust in my brother’s soldiers.  If I am going to have any in the long term, it beats having cancer anytime.  And brother dear, I am certain you will give it your best shot.

My brother has taken over

Good news!

Well, I think it is.  The thoughtful Sister T couldn’t wait for us to return to the clinic tomorrow and SMSed to share with us that the VNTR that I did showed 100% donor cells.  It was supposed to take a week for the results.  The clinic must have been chasing the laboratory, or the laboratory is just super efficient.  VNTR stands for Variable number tandem repeats, genetic markers used to quantitate bone marrow transplant engraftment.

So my brother’s soldiers have taken over.

There were strong signs of engraftment of my brother’s cells in me even before the results were out.  My white blood count was increasing at a rate that was unlikely my own because of the chemo.  And there are early symptoms of GVHD.   That’s danger.  Let’s pray it does not get too dangerous.  AND let’s pray that my brother’s troop of cells do not initiate a civil war with my own beaten down cells and attack my organs.  My cells are friends, not foe.  The cancer is your foe, so go attack that direction, alright?  And make it fast, please.  Beam your chakra over, dear brother.

Still coping with a fever, sore mouth, dryness and fatigue.  But manageable.  Dr thinks it might be oral herpes.  So I am now off antibiotics and on to antiviral medication.

Tomorrow I will be turning vampire again and checking in early morning for 2 pints of juicy blood.  Slurrrpp!

Radiotherapy

Yesterday, I received my first dose of radiotherapy.

My radiotherapist saw me briefly before my session.  A quick view of my CT scan showed the cancer is still bulky.  Didn’t get to see or discuss the rest of the scans.  To rid the bulk, there will be considerable damage to the lungs which will render me breathless for the rest of my life, so the plan is to go through 12 RT sessions and do a CT scan again for adjustment plans.  I am one of his most difficult cases, he said.  And he happens to be the same radiotherapist who treated my cousin’s husband 11 years ago (and he is in remission till this very day!).  Doc, I’m not worried, I still have confidence in you.

I now have 3 markers in the middle my chest area, and 1 marker each on both sides of body near my bra line.  These will be where the beams will pass through my body.  Proper care is needed at these areas.  No soap, no rubbing.  These areas will be super sensitive and might experience some sun burnt effect.  My esophagus will probably be ulcerated too in due time.  Oh, well, I will deal with it when it happens.

The session was a breeze.   The therapists were great and comforting.   I asked for the duration and they replied, ‘Depends on how cooperative you are’.  OK, cool.   I was laid down on a machine and what looked like the ‘beamer’ which could rotate 180C which was cool.  But the moment they placed the machine too close to me and I saw little parts of it that looked like it was going to shot laser rays at me, it freaked me out a little I was afraid I would move and that would be damaging.  So I quickly closed my eyes and remained so for the rest of the session.  It was less than 10 minutes.  And I headed home.

Still dealing with a fever.  And a constant headache ever since the second transplant.  Keeps coming back even though I have changed medications.  A rash is starting to show on my palms and soles depicting early signs of graft vs host disease (GVHD).  Keeping fingers crossed I will overcome this without much complications.    I strongly believe in my brother’s cells since we get along so well.  My dear brother, you had better not choose to fight with me now!

Going into the clinic today for another round of blood test and further action plan.  Hope to get good results too on the graft (a VNTR test was sent to the lab on Wednesday).  The clinic staff is even more excited than I am.

Believe in hopes and miracles.  I have a miracle baby after all.

Waiting game

Right now, I am in the middle of an unconventional method battling lymphoma.    I am all drained out, feeling like a walking zombie, down with a sore sore mouth but nevertheless still feel happy and good and ready for whatever thrown my way.  Do not stop punching until the enemy falls.

The day after the CVC line was installed, I underwent a reduced intensive chemo regime for consecutive 3 days, followed by an allogeneic stem cell transplant on day 4.  Day 4 (1st October 2010) is the day my dearest brother fearlessly and unconditionally underwent a procedure under general anesthesia to donate his marrow drawn out from his pelvic bone.

My brother, my one and only sibling, matched 100% of 6 of my human leukocyte antigen (HLA) tissue type.  There is a 25 % chance of being an HLA identical match between siblings.  No one can guarantee the transplant will work,  but I still feel like you are giving me a second chance in life.  And thank you for relieving me of the pain that I would have had to go through if I had an autologous transplant.

We are known at the clinics as the small but happy family.  A doting husband and a caring brother who often take turns to support and feed me during my treatments.  And perhaps we are more talkative than the rest there, often cracking jokes and laughing or playing Ipad games while I was doing my treatment to keep my spirits high.  And I always always had home cooked food.  But little did they know how extensive and big my family is, both sides of my parents and also my husband’s, and the never-ending support that they are giving.  I can go on and on about how much they have done and are doing for me and I hope to live on to repay them back in some way for all their selfless love showered on me.  Family truly is the greatest pillar of strength for me and that really pushes me to fight harder.   So what the nurses said is true, I am truly truly blessed.

The chemo has since wiped out my entire immune system and I have had another partial transplant done last Thursday (7th October 2010) with a little bit of complication.  My blood pressure and pulse rate shot up and they had to slow down the transfusion.  I was too drowsy to remember the commotion though.  Which is a good thing.   Now, I am to eat well and to stay out of trouble (free of infections) until my blood counts improve.  I have had platelet support last Saturday and hopefully I do not need further transfusions.  We have so far under doctor’s order maintained a no visitor policy and practising strict infection control at ‘home’.  It is hard on everyone who is here with me as they have to avoid crowds and practise extreme hygiene as well.  We have hand sanitisers and masks everywhere!

X-ray showed some good results so we are headed for radiotherapy next too.  I have since met with Dr L yesterday,  and after today’s CT scan, they will map out a treatment plan for me and we will commence RT treatment coming Thursday.  I was all geared for it even before meeting the doctor but he insisted I must understand the permanent side effects of RT, most significantly lung scarring.  As he puts it, there’s no point rendering me tired and breathless sitting like couch potato all the time for the rest of my life.  Hmmm… whatever you say doc, bring it on and just help me blast the bugger away.  Honestly, I am quite eager to start on RT.  And did I mention, the CT scan room had pictures of corals and clownfish on the ceiling too?  Gosh, I miss my toddler.  Hope she is not creating a nuisance at home.

So from now there will be daily travelling to and forth two doctors working hard trying to cure me.  I love my doctors.  I can feel their commitment and passion in what they do and I am glad they are taking care of me, medical wise.

I miss my little munchkin Elis.  She has gone home with my mother in law last Wednesday.  My mother in law is really sweet.  She came to lend us a helping hand with my kids.  Just so that my two little munchkins, who are my will to live on, can be with me when I commenced intensive chemo.  While it may seem cruel to separate Elis from me, toddlers are usually full of germs and I find it even harder for me that I have to push her away every morning or everytime she attempted to hug or get near me.  And knowing that she is in safe hands and being so well loved by my in laws and everyone back home truly give me a peace of mind to stay put here to continue my fight.   And I still have my littlest munchkin with me.  He just turned 4 months on the 9th and never fail to turn me emotional with every little milestone he makes.  He can stare into your eyes and coos loudly, as if trying to strike a conversation with you.  He likes watching TV and gets really excited when his daddy hops him around lightly.  And he’s learning to turn too.  Happy tears.

So now it’s still a waiting game.  Going with the flow on a day by day basis.  Once my counts are up, we will be moving into the danger zone of graft vs host disease.   Well, let’s pray I will not reject my brother’s army sent to back me up in the battle.

Needles

CVC line

Two weeks ago,  i had my central venous catheter placed on the right side of my chest area next to my underarm.  It will be used going forward for the administration of my chemotherapy drugs, blood tests, stem cell transplant and also possible blood transfusions.  Despite the risks involved, I am so so glad I got it installed because of my rising fear of needles.   My line looks similar to this picture.

In normal circumstances, these CVC procedures can be done at the clinic itself.  In my case, however, due to the positions of my stent which is on the left up to my neck, and my tumour which covers a large area on my middle and right chest, my medical team suggested we opt for an x-ray guided insertion under local anesthetic.  True enough, the ultrasound shows that my left vein is smaller, so my right would be more appropriate.  That probably explains why administration on my left always end up with slower flow and longer fluid retention.

Do not be deceived by how uncomfortable it looks as it has ended my misery of having the medical team trying to locate a good vein/vessel to use for their administration of drugs and for other tests.  My veins are narrowing and ‘hardening’ (am not sure if this is the right term to use but that is what I hear ALL the time).  I used to have big juicy veins which my therapy nurse loved, but now my veins are showing are temporarily scarred needle pokes, narrowed and linked with temporarily damaged nerves.  I wonder if I should snap a picture of them.  My fluid retention was so terrible at one stage we even tried poking my veins on my right leg.  Huge mistake.  Not only did it hurt a nerve, it was rather painful it left quite an unpleasant memory.  I have a strong feeling that experience led me to my fear of needles, mostly.

But all these are temporary.  For I have found a great solution to help me overcome my fear of needles.  My little toddler is afraid of needles.  She has a surprisingly good memory and marvelous sense of direction, which probably explains why she was able to recall the directions to the doctors’ clinics, recognises an outlook of a clinic, and worse of all, cries down the house whenever she sees her doctors.  The word ‘doctor’ was taboo to my girl.  Simply because she has a fear of needles.  Ever since I started on chemotherapy, I had been having Neupogen jabs at home administered by my mum.  I realised I was getting a phobia of needles so I got my mum to administer in front of my girl to show her that needles are NOT painful and that mummy did not even feel a thing.  She would stare at me and ask, ‘ Mummy, not painful?’ and I would say, ‘No, no pain at all.’  And when she fell sick in SG, she visited her brother’s pediatrician.   She did start to cry but the PD was very good with kids.  He made friends with her.  Since these episodes, I noticed that she’s no longer scared of going to the doctor’s and even had fun watching Elmo’s Seeing the Doctor over and over again.  My dear mother in law brought her to the dentist for her first check up a couple of weeks back with no resistance from her at all! I am so proud of her.

Happy Birthday

Today is the birthday celebration of a very special being.  I am not entirely sure if today is the exact date, but I would have loved to be there to join in the celebrations.

I thank you for being one of my pillars of strength through this ordeal.  I thank you for guiding and calming me when I am clouded with thoughts and uncertainty especially in my hours of need and remind me that there is hope and not to give up.  I thank you for taking time to know, to care, to listen, to find out, to share, to pray, to love, to understand and to never give up on me.   I thank you for teaching me to truly understand the meaning of selfless love.  I thank you for being there for me and still holding my hand.  Please do not let go.  Let me be well enough to celebrate with you next year and years to come.  I love you too.

Finding Nemo

We introduced my little girl to Finding Nemo about a week ago.  The moment Nemo was caught, she started crying inconsolably and refused to continue watching the show.  We tried to tell her that his father will eventually find Nemo and Nemo will return home, but she just kept shaking her head and refused to accept to our reasoning.  Since then, I have been attempting to watch it with her again and again, hoping to help her overcome that scene and let her enjoy the rest of the show, but to no avail till this very day.  Even the mere mention of ‘Nemo’ will make her cry.  She could not even sleep that same night and her nightmare must have woken her up when she got up looking for me and my mum when my mum was giving the night feeds to the baby.  Yes, it was THAT terrifying for my toddler. But heck it was heart wrenching yet funny to see her in this state.

I went for my PET Scan just this past Wednesday.  Being alone, I concentrated on my readings and meditate whenever I could to avoid letting my thoughts wander.  In the scan room, they lay me down flat and when I look up, I found illuminating pictures of corals and clownfish!  What a great way to calm the nerves of patients.  The clownfish obviously reminded me of my little girl and Finding Nemo, making me smile.  A strong reminder of the main reason I have to fight this battle.

My scan results were not good.  Not only did the tumour shrink only a little, it is more dense and there is some activity shown in the liver.  Not good at all.  So it’s time to change chemo regime again and this time, I doubt I have any choice but to go for the high dose chemotherapy cum stem cell transplant even though the scan results are not favourable.  Usually, and preferably, conventional chemotherapy would be used to kill off the cancer and the stem cell transplant/high dose chemo will come in after the scan is clear or the tumour has shrunk tremendously.  Whatever it is, I do not see myself as hopeless.  As long as there is treatment available, there is still hope.  So I must continue this fight, however tough it may be.

And I believe God work wonders in many ways.  My dear brother, my one and only sibling, proves to be an exact match.  Therefore, he is  my most likely donor for my allogeneic stem cell transplant.  I have my children’s cord blood as back up too.  Back then when I delivered my first born at home, cord blood banking was not very popular, but now I am glad I got it done.

Yesterday, I developed a low grade fever and had a terrible night’s sleep as the tumour is likely affecting my nerves around my shoulders and back.  Not to mention the throbbing pain in the chest which is rather hard to ignore.  I did not dare take panadol/painkillers for fear that it may cover my fever and leave an infection undetected.  Today, I went back to Dr T and was prescribed some steroids as part of my new regime and some painkillers.  They help bring down the level of discomfort so that I can continue doing other things and forget the pain.  It’s funny how I felt perfectly fine just two days back.  This cancer is simply not giving up and getting stronger.  No wonder Dr T calls them the ‘Commandos’.

So here I am, waiting restlessly ( could it be the steroids?)  for Monday to come so that I can begin my high dose chemo.  Praying hard that my blood counts will improve and that everything else will be smooth.

On a related matter, apparently Singapore only has 3 days supply for the universal donor blood group which I belong to.  Yikes!

Closer to home, the doggie balloon (refer previous post) has lost all its ‘legs’ and is now floating on the ceiling much to my daughter’s disappointment.   She wanted the balloon to ‘fly’ yet when it’s floating now, she wants it on the ground and kept going, ‘You fix for me ah, you fix for me’ and ‘Balloon come down!!!’ (yes it’s my fault that she has caught on the local colloquial English this young) .   And before I purchased the balloon, my friend Shan suggested that I could keep and refill the balloon again after the air runs out.  Looks like there will be some repair work needed before I could do that.

Missing Beau

Went to do a little shopping today and brought my little munchkin to kid’s section to choose a balloon.  There was a pretty good selection of animal balloons at the place and I wanted to excite her.   These balloons have ‘leg’ weights so they look like they can walk when u pull the string attached to their ‘collar’.  At first she wanted the duck, then the dog, and then the cow, and then another dog (there were several types of doggies there).  We made her decide and finally, she settled on this.

This doggie somehow reminds me of Beau at home.   He’s my mum’s dog,  ever ready to pounce on strangers and people he dislikes or thinks he can bully.  He’s a handsome one, coming to 4 years of age now.

My kiddo got home and started calling the balloon Beau.  I thought she was missing Beau until I realised I was the one who started addressing the balloon as Beau.  And she’s merely following me.  Or maybe she really does miss Beau.  Beau got hurt in a fight with some stray right before my mum and kids came out.  So he’s limping at home.  I hope he recovers soon.

Baby W is down with a low-grade fever following his vaccination yesterday.  He fidgeted in his sleep.  And for most of the day, he refused to be put down to sleep and wants to be carried all the time.  He looks really tired and sleepy though.   Now he seems contented with the animals on the musical mobile rotating over his cot bed.

My kiddo wants to go walk her ‘doggie’ now.  I will have to accompany her around the house.