Early bird?

I have decided to leave for surgery earlier than originally scheduled after careful consideration of what consequences delays could bring. I depart later for HUKM for expedited action. Even so, it's safe to say that the confirmed date for my third major surgery in 11 months will fall on the 7th of August 2009 but if I'm lucky (or not), I'll get an earlier date to relieve myself from the misery I've withstood for the past 4-5 weeks.

Thank you to those who are concerned for me. You are my burning candle in this pathless journey.

My sincere apologies to those that I've offended. Please try to understand that I'm only human and emotions run high when you're battling against sarcoma cancer.

Team Sarcoma Initiative (Malaysia)

In approximately 8 hours from now, history will be in the making as my friends and I embark on a global project in benefit of the Liddy Shriver Sarcoma Initiative. You, too, can be a part of this community project through mere participation! When you join us, you automatically contribute a little towards sarcoma cancer research globally.

We're ecstatic about meeting strangers and having a blast! Come join us in your casual wear or dapper wear (whichever your prefer) at the Old Frees' Association (OFA) if you happen to be in Penang! We are congregating in the multi-purpose hall of OFA, addressed at 41, Jalan Sultan Ahmad Shah, 10050 Penang. We kick-off our country's inaugural sarcoma awareness program and team games session at 1000 hrs and finish off at 1300 hrs.

We're so psyched about this golden opportunity to educate the public that we've been featured in the Chinese press too!

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UPDATE (30 JUL 2009): Post-event coverage was exclusively done by Guang Ming for Team Sarcoma Initiative (Malaysia). Click here to view the scan.
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UPDATE (27 JUL 2009): We certainly had a blast running the event and I believe the crowd, a good mix of old and young, had a good time too! Here are some snapshots taken by my friend, Swee Jin, on his ever-trusty mobile phone.

Surgery No. 4.

Music: Orbital - Halcyon (Tom Middleton Re-Model) (click to download)

I know I haven't posted much these few months. I thank my readers for their patience and understanding that during my absence, I'm nursing my condition and recuperating to the extent that I've had no appetite to blog on a regular basis.



After going through another cycle of cytotron in Bangalore, I requested to return early, having stopped midway through my therapy complaining about frequent nose bleeding and swelling of both the orbital and temporal area.

Fast forward to date, I am finding it increasingly hard to control my balancing and causing neck strains when there is a fluid build-up in the affected regions. The swelling has somehow pushed some cancer-infected cartilages from my sinus downwards towards my right nostril, triggering breathing problems. Severe headaches are also noted in the mornings too.


See the white stuff within the right nostril...that's my cancer pushed down to the tip of the nostril FROM the sinus.

Throughout my journey as a sarcoma cancer survivor, my experiences battling with it has been met consistently with stumbling blocks may it be in the form of therapy options or medical financial aid. But I'm thankful that at each hurdle that I meet, there's some form of reprieve. Many people out there who suffer the same plight don't get the necessary help to move forward so my heart goes out to those who are still longing for a break.

So, I brave myself for another personal milestone. Another craniotomy is scheduled this 7th August 2009 in HUKM to perform further cancer mass debulking and address alleged cancer cell apoptosis/necrosis in the swelled areas. That translates to three major surgeries in the period of 11 months!



It is my heart's desire to seek God for His grace, ensuring a successful op and quick recovery. I will never give up on my family and the good Lord will rise me up again from this forthcoming surgery.

D'Moments captures my hope in faith.

Music: Hillsong United - King Of All Days (click to download)

I've always told my friends that for a cancer patient, you sometimes enjoy good days and then there are really horrid ones that inflict you with pain; dishearten and hinder your thoughts of survival. It isn't exactly rocket science to understand that different people resort to different means to calm themselves.

For me, regardless of what sort of day I go through, one thing that's been holding me up is my faith and trust in the good Lord. I am comforted by His presence when I pray and I feel blessed to be able to communicate through the prayer channel with Him. I've still a long way to go as I am only a 'Padawan' when it comes to having a strong relationship in Christ. It's important that I make a note to myself daily to thank God for keeping me alive today. Sarcoma cancer is aggressive and the term 'metastasize' is something I'm familiar with but shudder to think of. I regulate my breathing; consume the book of Job (the man who epitomizes the term 'faith' and also a lesson that we may question but not critic God's methods as we're here to appreciate His unfathomable feats), flip towards Isaiah 61 (He comforts my broken heart and is my Salvation), shed tears upon reading Luke 19:10 (Again, I am saved through His grace...despite my ignorant past) and thank God wholeheartedly anyway. In life, I think it's best to live it like there's "nothing to win and nothing left to lose" (Paul Hewson).

Last week, D'Moments Photography invited me to be a part of their special photo series in a church in Penang. The outcome was a series of poignant black & white shots of me coming to terms that Christ remains my Salvation and the serenity of that thought. Kudos to Mr. Rudy Choong & Mr. Bobby Yeoh for their time and effort to take me out on my first ever professional photo shoot. I should have done this in high school when I had youth on my side!

In the news: Why is sarcoma dangerous?

Music: Red Snapper - Bogeyman (click to download)

http://news.bbc.co.uk/2/hi/health/8109048.stm

This article on BBC News echoes my sentiments exactly. Right at the point where it mentions that in osteosarcoma (a variation of bone cancer), "It is not uncommon for diagnosis to take weeks or even months", and "We need to make bone cancer a priority and we urgently need more research to identify effective new treatments".

Between carcinoma and sarcoma cancers, only the latter throws in less hope and more of a challenge to counteract. Just ask any oncologist in your vicinity today.

Are things getting tough?

Music: Scott Weiland - Sentimental Halos (click to download)

It's been two long months and I'm still waiting and hoping for answers in my quest for palliative care against mesenchymal chondrosarcoma. The last time anybody dared to use the term at me was way back in 2006 when I had my first bout with it. It is indeed difficult for patients with recurrent episodes of skull-base cancer in Malaysia to seek for proper follow-up health care. There is no availability of technology for one. And the obvious is the rarity of what yours truly is going through. I'm glad that I've not stumbled across whack practitioners that will randomly prescribe anything...say, chemo drugs or repeat conventional radiotherapy in precisely the same area that's been treated before, just to get me out of their hair.

I keep asking God if I'm supposed to wait for new symptoms to crop up or may I be enlightened with some directions soon. Speaking of the former, my right nose started to bleed again just a few hours back. The last time I hit the panic button in mid January, my doctor told me only another debulking surgery could have helped me. Now, I've read about people who've been through hell and back; checking in and out of surgery wards for as long as they could remember but honestly I have no intention of following suit.

Why am I slowly waiting in agony?
For a miracle drug to cure this bug?
And while my worries are halted in His reprieve,
The clock ticks on synonymous with each air I breathe.

If faith is what holds me still,
Can I at least have the belief that medicine cures the ill?
Seeking high and low if just for a path,
It's still useless - everything leads to my epitaph.

Thank you to all my friends, the Malaysian Chinese Association and doctors from HUKM  for being concerned about how I'm pulling through and helping to shoulder this burden with me. If I ever have anything to smile about these days, it's because of you.

Take this battered ship.

Chondrosarcomas are stubborn as a mule. After getting my latest scans, it looks like the cancer mass is scattered everywhere around the skull and sinus. Here is a scan of the report:







This new MRI scan indicates; from what's relayed to me by the radiologist, that the cancer mass rests primarily around the masseter muscle region. That probably throws away the notion that I'd only need a neurosurgeon should another dreaded surgery be required in the near future. I'd need a hella good plastic surgeon to tackle this.

Why isn't there an option for me post-surgery to counter these things before they show up?

Down...but not quite out.

Music: Rufus Wainwright - Smile (click to download)

I thought it would take a lifetime before I could muster the courage to write again, after all that I've been through in the past 2 months. Yes, I've survived yet another bout with chondrosarcoma and I remain thankful to everyone that's been pouring in such tremendous support during my third surgery in three years.

There's still much to do and although I would like to disclose the details, I really can't be certain of anything given the fact that I'm nursing a leaked dura layer along my cavernous sinus post-surgery. It's healing at its own pace but better that than status quo. Until I have some answers or leads, let's focus on things other than my niggling health issue.

I've been filling up time watching boring political thrillers to spending my short days (I've been having trouble sleeping) thinking of the route ahead whilst sipping on cups of infused lemongrass. Even so, I've never wanted to associate myself with your typical cancer patient; depressed, angry and beat. This is where all my readers and friends fill in the hole in my spirits. I acknowledge the joy of your company and correspondence to me so keep it coming!

Surgery no.3 becomes history.

Surgery number 3, with the objective to debulk more cancer mass has just been completed a few days ago.

Acknowledging that recovery isn't looking to be easy this time around. But I'll soldier on. Always have, always will.

If it sounds scary, it probably is.

No, we're not talking about Friday 13.

So after much hesitation, I've finally got my latest MRI scan done in Hospital UKM. By looking at this report, it looks like I've got a hill to climb. I still want to get my PT (proton therapy) done in Boston so I'll climb that hill if that's what it takes for me to get a better chance at eliminating this cancer.
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MRN: N211322
MRI Brain 12 Feb 2009

Clinical data:
30 y.o male, k/c aggressive recurrent mesenchymal chondrosarcoma. Multiple debulking done 2006-2008. Rt enulcleation done Sept 2008. MR to reassess tumor. KIV debulking.

Sequence:
Arial: T1WI, T1W1, FLASD2D
Coronal: FLAIR
Sagital: T1W1

Comparison made with previous MR dated 23 09 2008.

Findings:
The previously seen heterogeneously enhancing mass in the right middle and anterior cranial fossa is currently larger, measuring 8.7 (w) x 6.4 (ap) and 9 am (cc). It is relatively hypo to isointense to grey matter on T1W and slightly hyperintense in T2WI & FLAIR.
Medially the mass crosses the midline and obliterates the entire post-nasal space. The mass also involves both cavernous sinuses, however both ICA are patent.
Superiorly the mass extends into the extradural component of the right anterior and middle cranial fossae. There is also extension into the right frontal sinus causing fluid retention.
Posteriorly there is involvement of the right temporal lobe and the clivus with surrounding edema.
Anteriorly there is evidence of right orbital enulcleation and the orbital space is replaced by the mass. No clear demarcation between the mass and the posterior wall of the right maxillary sinus. Presence of fluid retention within the right maxillary sinus.
Inferiorly the mass extends to the right pterygoid fossa region, with involvement of the medial and lateral pterygoid plates and muscles. The right parapharyngeal space is obliterated. The normal configuration of the right parotid gland is not appreciated, which is suggestive of infiltration into this gland. No prevertebral extension as the mass is limited posteriorly by the prevertebral fascia.
Laterally the right infratemporal space and right masseter muscle are involved.

The previously seen enhancing mass in the right parietal scalp (tumor deposit) is no longer present.

No other focal lesion within the brain parenchyma.
No midline shift.
No hydrocephalus.

Impression:
Known case of mesenchymal chondrosarcoma which shows worsening of the local extension compared to previous MRI.

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I'll see if I can get some MRI images up here in the next few days. No promises because I'm doing quick posts from the hospital and I don't think it's even allowed but they were nice enough to oblige.

Another surgery beckons?

I was hoping that if I could observe silence from my blog, that meant good progress on my health. But I guess it's not written in the stars. For the past few days, I've been suffering just like any brain cancer patient would (and I'm a skull-based cancer survivor mind you) with the extreme headaches and depleted appetite. I consider it to be a luxury that I could muster enough strength to even write at this particular moment.

The sinus problem I've mentioned back in January has started to evolve from causing severe nose bleeds to splitting headaches (counteracting the pain with mefenamic acid 250mg) around the orbit and temporal area - just like the ones I've experienced back in Bangalore before undergoing cytotron. It also needs to be noted that I am coughing out phlegm occasionally with streaks of blood in it. I am thinking objectively and the upcoming MRI (on brain) & CT scans (on skull and chest) this Tuesday will bring my current health complaints into clarification.

Just like how my cancer progressed from nothing to something in a short span of 1 month back in mid 2008, my hunch is that it's rebooting itself again; reinventing itself now that it cannot attack my eyes. The pain is so intense that there are days when I feel like Jonah (in the Book of Jonah) - that God does giveth and taketh away. Just months ago, I was feeling optimistic again about the possibility of a cure. Today, I fall back into the same wormhole that I was in back in July 2008...lost and uncertain. But the Lord also does display profound mercy to those who believe and I hold my last clutches of hope in the promise of that.

The likelihood that I'm to require invasive surgery to solve this problem won't surprise me at all after all the hell I've been through for the past few weeks. Question is: shouldn't I have a longer gap between brain surgeries?

Campbell Street comes alive!

Chinese New Year open house (more like open road really) celebrations.

A precursor of things to come?

For the past few days, I have been experiencing what I deem as a precursor to what I suspect is a ruptured blood vessel. Blood drips profusely from my right nose like tap water for two consecutive days now. It happens in the early morning when I clear my sinus by blowing my nose. The floodgates remain open for 1 minute and halts after attempts to stop the bleeding through conventional means (pressing hard against the nose bridge).





Where the damage stems from will be determined by an Ear, Nose & Throat specialist that I plan to obtain advice from by tomorrow.

There goes my uneventful first quarter of 2009.

UPDATE (17 January 2009 @ 1400 hrs): Dr. Goh, ENT specialist from Loh Guan Lye Hospital assured me that yesterday's episode wasn't as serious as initially thought. Upon inspection, he verified that the bleeding was caused by severe blood clots located around the paranasal sinus area (as illustrated, just before the ethmoid sinus region) which is near the surgery site. As per his indication, it looks to be drying up and healing so he has only prescribed antibiotics for a week's duration.

UPDATE (18 January 2009 @ 0245 hrs): So much for the term 'healing wounds'. Bled again after sneezing heavily in the middle of the night.