Of oranges, and tsunami's

No, I'm not trying out Mendis's 'carrom-ball'. I'm thinking why such an advanced science like Medicine has cures for diseases like diabetes, hypertension, heart disease and even cancer but has no cure or remedy for something as simple but prevalent as the common cold! I wonder if the same kind of research into developing a cure for AIDS has gone into formulating something for the ‘cold’. Of course unlike the former you don’t die from it, you’re just tortured alive.

I’m suffering from a horrible cold, and having sneezes that rival the tsunami. It has nothing whatsoever to do with my immunity, my neutrophils are in top shape. The only medicine worth using really is mom’s coriander and the daily dose of Vit C, which I get from the above oranges. All the cucuits of my brain are clogged so next to nothing computes.

If someone knows where to get nasal removal surgery, please let me know. Pronto. In fact as quick as a sneeze.

Re-Mission (game)

I'm 24+ and study in a field that needs continuous, tremendous application and can ill afford the time for anything else, yet I too am addicted to gaming - computer gaming. Starting from Prince of Persia way down the years I've played a lot of games. I do not claim to be a hard-core gamer or guru, though. I'm just your average young John Doe Siripala Gamlath. And hence this is no review, just a musing, a story of a game.



I had heard of games being used for therapeutic purposes in random whisperings, nothing proven, but when I chanced upon Re-Mission I was pleasantly surprised. Re-mission as the website pointed out was a game developed by HopeLab ('a non-profit organisation dedicated to developing cutting edge interventions for young people with chronic illness') with a futuristic theme in the 2020s when nanotechnology is very advanced and nanobots are used to fight illness at a cellular level.



Re-mission is a TPS (third person shooter) in which you play as one of these uber-cool nanobots...

Let me just quote from their description...



"An epic battle rages deep in the realms of the human body. Colonies of microscopic cancer cells replicate, attack and damage healthy organs. Enter Roxxi, your gutsy and fully armed nanobot, and medicine's mightiest warrior. Lead her through challenging missions and rapid-fire assaults on malignant cells, wherever they hide. It's the world's smallest battlefield, yet the stakes have never been higher."

So being interested I digg some more and find out they are distributing the game for free to kids with cancer in the US of A. Not being a 'kid' still just out of curiosity and fun I signed up a form detailing my particulars and condition requesting for a DVD version of the game. It was just a wild grab, they did not undertake overseas delivery and who'd mail me all the way from USA??



However two weeks later, in my mailbox...

I was elated and powered up the bed-top to try it out.



So, Remission is good. It is pleasing to the eye, and I could find no glaring glitches in the animation, controls or gameplay. That's all I'll say coz that's all I know about the technical aspects.



What Roxxi (the nanobot) is doing is hitting the cancer cells and infections inside the body using traditional methods (weapons) of chemotherapy and antibiotics. The game consists of numerous missions in which Roxxi helps out patients (mostly kids) to eradicate typical young cancer's like, Non-hodgkins Lymphoma, Leukaemia, Brain tumours etc. There is also a background story on each of these patients giving the players an idea of the scenarrios surrounding the cancer and how treatment is undertaken.

 

Why I love this game and why I've posted it on my blog is due to the proven health benefit on kids playing Re-mission. This game is distributed free to kids with cancer for them to identify with it. They see that they are not alone in the world of cancer, the symptoms they are experienceing are not unique but shared accross the board. They learn about the disease process and what happens to the body, and the importance of taking medicine, relaxation and other therapeutic measures. It improves their self-efficacy and restores in them the belief that they can kick cancer's butt.



The game is unique in that Roxxi never 'dies' she just powers down and then you are allowed to begin again a few steps behind where the casualty occured. This succeeds in keeping out the gloomy prospect of death while subtly implying that to beat cancer you need to keep on trying and trying, and then you get better and hopefully you can win.



"..We are hitting a very elusive enemy, the toughest, Cancer!"



The positive effects of this game has been proven by scientific studies. And it's exciting and fun to play also.



If I hadn't played it myself I'd never have thought a game about cancer could be fun!

Genesis to present

So there I was at the young age of 20 diagnosed with CML. What happened afterwards uptill now, is a long long story, and to finish it would take a long time, so I'll just tell the most necessary and exciting parts and skim over the rest.



After, the Oncologist I (yes there is an Oncologist II.. details to follow) diagnosed me, I was put on a fairly new, breakthrough drug for Chronic Myeloid Leukaemia named Gleevec/Glivec (trade-name for drug Imatinib mesylate). It was manufactured and marketed by Novartis who were represented in SL by Baurs ltd. And I was put on a dose of 400mg/day measuring to four tablets daily. Now comes the funny part. Hold onto this. In the period of my diagnosis, in August, 2004 -

One pack of Gleevec (for one month/120 tabs) cost Rs. 278,534/= , 

meaning that a day's treatment would cost        Rs. 9,200 

and that a single tablet would be more that      Rs. 2,300

Fortunately we had only to buy a months worth of medicine for there was this patient assistance programme named GIPAP(Glivec International Patient Assistance Program) which provided Glivec at no cost to qualified patients.It was a programme under Novartis which was been run for them by 'The Max Foundation'. These are two organisations to which I am eternally grateful for providing the assistance. Until recently there was much hassle in collecting these medicine, as it was almost given on a ration basis by the kind people at Baurs, but that was due to the idiotic government putting exhorbitant taxes on the free meds that we'd be recieveing, taxes the Baurs people had to pay. Now however that red tape block has been lifted after successful lobbying by a fellow CMLese, to whom we all Sri Lankan CMLites are grateful. We are now collecting our three monthly med packs with much happiness.



Until now, continously I have been taking my daily four golden bullets.

And it has been very successful, it has kept my bad Leuk cells at non-existant levels while causing almost next to nothing of discomfort to me. Nowadays Popping the four golden tablets in and drowning them with a glass of water has become an intergretated almost mechanical chore of my morning rituals.



So to confirm that my cells are kept in check I do a monthly full blood count (FBC); and meet my doctor once every three months. I also have to renew my GIPAP approval via my Oncologist at these visits. Also I generally do a Liver profile once a year just to check if the drugs are in any way screwing up my liver.



Well that's it from a disease sense of view. My Oncologist I died in my second year of treament due to medical illness, and I was so sad to lose him. But my current Oncologist whom I was eventually referred to turned out to be a much more friendly, humourous and likable chap, and we get on smartly.



That effectively sums up the tale on how I came to be here, and now I can blog from the present aith an occasional walk down the memory lane.



Last of a series of posts archived "Genesis"

1. Diagnosis


2. Post-diagnosis


3. Deal with it! 


4. Genesis to present
   
   

Deal with it!

"Never give up, and always be yourself, because life is too short to be anyone else."

In time the diagnosis whirlwind does also settle down. Then you are inevitably left to pick up the splintered pieces. Your family, your loved ones would also help to shift the dirt in looking for those gems, those pearls that used to be you. But cancer, it's a thief. It steals time. It steals hope, happiness among many other things. In the end even if you lovingly stick together all those bits and pieces you are left incomplete. Changed rather. (As I'd like to put it). And the trick here is to deal with that. What I did then was to simply appreciate what I have, instead of lamenting on what I didn't. If you have that sort of mindset you'd be amazed at the clarity with which you start to see yourself. I saw all the love and courage around me, which is the most prized thing I still treasure. I saw that CML was not going to affect my life, my health. I saw that outwardly nothing really had changed. It was only me, my mind that needed some maneuvering. Then I realised that in contrast how little CML had lessened me.

Cancer can change you for the better too. I'm not that shallow materialistic, wannabe' kid anymore, I'm much more circumspect now. Its a miracle in itself the simple joy I can take from watching a simple cloud formation in the sky. (that dork who was looking up, that you bumped into you, just might have been me)
Sigh... All I want to say is 'I am better because of cancer'. As hard as that is to digest. I now pray attention to what really matters. It's been a wake up call to a new way of life and new way of seeing things!

CML has done amazing things, miracles for me...
I am about 5 shades lighter (skin colour) because of the medicine I take for it. (the girls are way jeolous about this); then I have a heavenly girl-friend who stands by me, who I found in part due to CML.
But those story is for another post. Await...


Third of a series of posts archived "Genesis"

1. Diagnosis
2. Post-diagnosis
3. Deal with it!

Post-diagnosis

"The only thing worse than having a cancer is getting the Diagnosis!"

Really? Not so. Not with me, and not with the majority of people out there. Accepted, the family wants to shield the patient from the diagnosis to provide protection from the emotional backlash. But we are an intelligent group, patients these days; we want to know what we're dealing with. We need to come to terms with it, confront it head on. Then either let it overwhelm us or conqueror over it. It's our diagnosis.

It winded me, my big diagnosis. Certainly I was not expecting it. I was numbed for a while, for quite a while. The "why me?" syndrome inevitably crept in.I was treading on loose ground, loosing my feet in the mountain climb of happiness. I couldn't hold on to anybody. They were too weak, too vulnerable, too happy. How was I to show that I was affected?

In the end it had to come from myself to myself, the thoughts...
"You know what dude? You at least have got something with a hippy name attached. And you may accept it now for a fact, cause it's not going to change. All this bull about it can't be me can take a flying leap into the paper basket. Yah, we'd not smoked, done the liq. So it paid off eh, maybe it prolonged this from happening, or prevented any suffering. Maybe all our exercise with diet and meditation even squeezed in a few more golden years"

It took three months, this paradigm shift for me. Becoming a "why not me?". Becoming chummy with CML. Grinning at it's face. Welcoming it when it daily pops into life.

This is another Shift in the fabric... Blogging about it. Anoynymously even though.

That will be the last, having the confidence to stand up and yell "Yes, I'm me and I have CML!". I'm working at it.


Second of a series of posts archived "Genesis"

1. Diagnosis
2. Post-diagnosis

Diagnosis

Let me take two or three steps back in history to the August of 2004.

It was a rosy period in life, just out of college, I had gained the prized entrance to the university of my choice after scoring reasonable marks at the A/Ls. Certainly, all was looking bright as I was waiting with much glee to celebrate the fast approaching birthday, which would signify that I’d have spent two fun-filled decades on this lovely planet.

I was a fit and healthy 19 year old, who’d never smoked, touched alcohol or anything else. I had no family history of cancer and no illness to note other than an occasional cough or cold. It was just such a cough that prompted my family practitioner to urge me to do a routine Full Blood Count (FBC) just in case. Being ever wiser than the doctor, or at least thinking so, I never got around to do the FBC until about three months later. And that was out of mere idleness, cause I had only gone to the hospital accompanying a family member. Anyway, that was where the whole bandwagon started.

Next day the lab called up (my parents) to say that my blood count was slightly abnormal and they’d like to do some further investigations using the remaining sample. These were done, and in a very hush hush manner I was brought to the medical centre for an Ultra Sound scan.

The results were… not bad, but definitely not good either. My FBC had WBC of 87 K/uL of which normally should be between (5-12), among other reports the blood picture was reported as “marked polymorphonuclear leucocytosis” and the NAP score was low.

Like you, at that time for me also these were only a bunch of letters thrown together and a number in front of them. Made no sense at all, so what was there to worry about. I was all amused to see the grown ups worried, and trying to hide that from me.

Another bunch of tests followed, of which the Bone Marrow Biopsy taken from my hip bone, well yes it was painful, even under local anaesthesia, having a large needle jabbed into your bone, lots of pushing and sucking to obtain a piece of bone marrow. But the Doctor was very kind and before the procedure he laughingly told me that in the years past they used to take this sample from your breast bone! Ugh! That’s all.

I also visited the Uber-cool Genetech to have my chromosomes checked and ultimately consulted another doctor with all these findings. He turned out to be an oncologist. He examined me, looked at my reports, and prescribed some medicine for me, giving further instructions to my father on how to obtain it, while I was shepherded out of the room.

That’s when I started using my mental faculties and with a medical student friend I had, came up on what was wrong with me. Which I confirmed by asking my Bone Marrow doctor. I had been diagnosed with CML - Chronic Myeloid Leukaemia. The Philadelphia chromosome positive type, my friend was quick to add. For that was treatable though it could not be cured and had a better outcome.

So, cancer at 20! It was shaping up to be a mighty interesting life!

P.S.- My handle “Philadelphian” stems from that. The fact that I have a Philadelphia chromosome positive type of CML

Re-introduction

Know, then, whatever cheerful and serene
Supports the mind supports the body too.
                                   ~John Armstrong

I’ve started a blog. A Web-log. But I’m not at all good with diaries and schedules and stuff. I have wanted to keep a diary when I was young but just about lacked the perseverance to keep at it. This is not going to be a diary. This is going to be about laughing, about having fun. About meeting somebody named CML, tentatively getting to know him better and creating a life long companionship with him. About accepting and giving back.

This is not all going to be about me (I hope). Yes, I have Leukaemia, I will talk about it. I will tell you how I got it, what Leukaemia is and what it means to have something like that in Sri Lanka. But, if ever this blog goes onto become a “Boo hoo, I have leukaemia! Come wrap your arms around me” type of thing; warn me, I promise I’ll stop. And in due course if I can convince at least one or two of you, to have hope in the face of cancer or any other disease, I’ve done my bit.

Before you ask I have a good prognosis and am going to outlive you, or give you a good run at it.

I hope you’ll enjoy the race… I know I’m going to.

My motto so to speak...

I do not know how long I'll live

But while I live,

let me give

Some comfort to someone in need

By smile or nod, kind word or deed.

And let me do whatever I can

To ease things for my fellow man.

I want naught

but to do my part

To lift a tired or weary heart.

To change folks' frowns to smiles again.

Then I will not have lived

in vain

And I'll not care how long I'll live

If I can give ... and give ... and give.

- B.J.Morbitzer

 

These are first lines that meet my eyes as I get up from bed every morning. I wrote this piece out on a rough cardboard piece and hung it just at the foot of my bed, ages ago, not realising that it would hold any meaning lest than of a well rhymed meaningful poem. 

But consequently in the last few years this poem was a source of immense inspiration. Now the letters are all but faded, peering closely at it you can only discern the deep gouges left by my pen long ago. But the letters, I remember them clearly. And the meaning is forever struck on my heart.

To Start...

Introductions are in order, I guess.

Well this Blog is going to be about myself, me having CML, and all else that springs up.

Definitions...
Me- An easy going happy go lucky 24 year old just starting out, (wild eyed) on a journey of wonders through the blogosphere.

CML- Chronic Myeloid Leukaemia, simply a cancer in the bone marrow, which I've been having for 3 years now. For more info.

But no, this blog is not going to be a rave about myself and a cry over my condition. Rather, I will probably tell you how glad I am to have CML. And that is not a constructed attitude, I am really happy.
This blog maybe an emotional chanelling of sorts. But I promise it won't be sordid.
I will tell you more, as we progress along.
Thats all for now.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.
~Eleanor Roosevelt