Showing posts with label leukaemia. Show all posts
Showing posts with label leukaemia. Show all posts

Cancer Patient Plays Well, and Wins Big For Charity.

Cancer Patient Plays Well, and Wins Big For Charity.
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Recently, I was given some pretty bad news. 

I've got bronchiolitis obliterans, a lung manifesation of the graft versus host disease that plagues me after my bone marrow transplant. Essentially, it's my donor's immune system (in bone marrow transplants, you inherit the blood making cells of your donor, which includes their white blood cells) attacking me. This time though, in the lungs. Over time, it's something I'll have to watch very carefully, as the survival outcomes for this aren't that great, and it's something that progresses too.

As you'd expect with anything of this nature, I was scared. Anxious, without even knowing it. Exams were going on too when I got the news, so I didn't even get time to properly take it in, yet alone look it up. When I did, I realised how bad it could very well get for me. And I got even more scared.

A range of emotions go through you when you hear bad news. You'd think I'd be good at dealing with these things now, given how I'd dealt with my cancer, and then my relapse and then a third cancer, and everything else (and there have been a lot of other things too) on the way. But though that attitude I took on board after all those things does help in the long run, it's almost impossible to make some good come out of this when it just hits you. Experience isn't exactly much help with these things. 

But as these things happen time and time again for me, what seems to hit, and stay with me most, and longest, is a sense of finality. 

Dealing with the leukaemia was the easy part, I feel often when I look back. The chronic effects of this all, combined with the frustration and grief (loss is loss; grief needn't be associated with death) it brings about, makes me prone to feeling this way. 

So I had this crazy notion a few weeks ago. What if this was the thing that brings me down? What if one of my hundreds of other conditions caused something like this too? Who knows how long I had left? 

So why not live out my dreams?

For those who don't know, I play poker. I started about a year and a half ago, when the cramps I get, that nowadays leave me debilitated and in pain most nights, started progressing. I needed something to do. Something to get my mind off things. So I started playing this game I learned years ago, something I'd played just for fun and in passing, at our local club. I was gonna cramp sitting at home anyway. Why not play poker while I got them

And slowly, but surely, I got better at it. I started playing buy-in, tournament events (I'd played for free for the better part of a year,  and win some money in the process). Nothing huge. In fact, til just a few weeks ago, the highest buy-in I'd posted was a $25 one. Most games I played were either free, or under $15. And til just a few weeks ago, I'd won over $6000, from less than $1200 in buy-ins! $2050 of that went to charity - as a reader of the blog had insisted on donating something to me, and that it be used for ME to have fun. That act stays with me til this day. The reason she wanted me to spend it on me just hit the nail on the head in terms what I was feeling at the time. But I couldn't just take someone's money in good faith. So I decided to donate all the winnings from her donation to charity instead! You can follow that journey here! 

So, where was I? Ah, right. My dream. Well, for a while now was to go and play in the World Series of Poker's Main Event. A HUGE poker tournament with over 6000 entrants every year, a first prize of over $7,000,000 (and a prize pool of over $60,000,000), but most importantly, one that attracts the world's best poker players!

I knew I was gonna play it at some point in my life. But after hearing the bad news a few weeks ago, I desperately wanted to do it this year. Even after the inital fear and that feeling of doom dropped away, I knew that life could turn at any moment, especially in someone like me. Who knows if I'd even be healthy enough to play the gruelling, 7 day tournament next year??

Yet I was still afraid. The buy in for this was $10,000! I'd be playing some of the best players in the world! People who played this for a living! I knew I was good. But was I that good? What would my parents, what would everyone around me think? Was it really worth spending a good chunk of my savings on this??? 

In the end though... this happened. 



Yep. I did it. I booked the next flight out, for me and my brother, and the next day, we were there. 

And the result?

This. 


I did it. I'd studied my butt off (because contrary to most peoples' perceptions, poker is a game of incredibly complex strategy, math and risk stratification), read all my stuff and played the most focused, quality poker I've ever played, for 10 hours a day, for just under 40 hours and not only made a healthy profit, but beat out thousands of poker professionals (including some of my heroes - who I got to play against too!) to get there!

It was the best couple of weeks I had in my life! All because I made this decision on a whim. 

I think Jim Carey encapsulates every lesson you could take away from this in one minute.
 


\
So. What am I gonna do with the winnings? 

Well, it's not a $28,000 profit. Remember, $10,000 was used to buy me in. 

But that's still HUGE for me! 

10% of the money goes to my brother. He's long been suffering alongside me. Indeed, more than me, I'd say. It's not easy going through cancer... but I reckon it's MUCH tougher watching someone you love have to go through something like that, while not being able to do anything. He's suffered not just the emotional and physical burden of looking after me, but also given up much of his life, just so I may have a semblance of a normal one. I can never thank him enough for that. But I can definitely try!

Around 10% will be going to my cousin, whose family took me in for a couple of months, and treats me as their own, til this day,  and my father, who's turning 50 this year. 

And 10% will be going to charity. I'm an effective altruist, and don't just believe, but KNOW that the best way we can make a difference in our lives is to give to the organisations that change the most lives per dollar spent. A great website actually does the research for you and ranks these charities for you. Which of these top charities am I giving to then? 




 
A great summary of Effective Altruism - a way of giving that makes sense!

In a way, all of them. Because, also something you may not know, recently, I started up a social enterprise - a charity that works as a business and distributes all profits to charities - called PlayWell! It's been slow work, but as soon as I'm a little more healthy, I can dedicate more to it. And it's well worth it. Because this thing could change the world. 

Imagine being able to make those hundreds of thousands of hours you'll spend in your lifetime on entertainment achieve good. Well, on PlayWell, you can. Through many direct and indirect ways, your every action on this entertainment app will allow you to make the hours you'd be spending on Facebook, or YouTube, or Tumblr or Instagram - the things you'd be doing anyway - make money for charity! Every tiny action of yours will generate revenue for charity! All while you enjoy watching stuff from your favourite stars, supporting them, and discovering the best content on the internet! If you know an internet star/a budding one - let them know they're invited to join now! Hopefully, it'll be a thing - sooner, rather than later, and help charities make money in a completely different, currently untapped, way!



If you know anyone who's a budding/current online star, who wants to make more money while helping the world, tell them to sign up at www.playwel.org!


And the rest of the money? Well... that'll be put to letting me play Next Year too! And in bigger tournaments for the year to come! At least 10% of all my poker winnings from this day forwards will be going to charity. And I've proven to myself that I can play with the best of them. I'm sure now that this is an investment that will pay off

While I was in America, I also visited some amazing doctors. And it's not too bad news for me overall, and the lungs! A doctor who I get second opinions from routinely saw me in person for the first time, and said I looked much better in real life than on paper - which was great for my prognosis with this disease. The lungs are still iffy, all agree, but it's not progressing, and indeed, may not progress in the near future, if I convince my doctors to get me on some drugs I've been telling them to put me on for months now... If you sense frustration there, you're right. One of my doctors described the care I'd been receieving from my recent doctor as "neglect"... And though there's one little issue left that may be concerning, overall, it's still great news!

And most importantly, I feel good! This trip has done so much for me. No matter how much I tell myself I can still do a lot - something that's kept me going despite the frustration this disease brings - I still occasionally get brought down. Now, I'll have at least one week that can remind me that I definitely can. Hopefully, that will help me continue to try and do as much for this world as possible.

 
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5. Long. Years. And I'm STILL Here.

5. Long. Years. And I'm STILL Here.
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On this day 5 years ago, my doctors told me these words... 

"Nikhil. The good news is, you're 17 and you have leukaemia. But the bad news is, you're 17 and you have leukeamia."

And they've changed my life. 

They've transformed me from a boy, fresh out of highschool, who wanted to help people, but mainly just wanted to play basketball all day, to a man who focuses on the opportunities rather than the prices paid, one who needs to put his all into that desire to help others...
But also one who often can't. 

It's been long. I've had 2 bone marrow transplants, with 8 rounds of some of the hardest chemo you can get, plus over 20 "maintainence" chemos (in truth, the fatigue they bring sometimes feels worse than those hard ones). I've relapsed, been to ICU at least twice (probably a few more times that I can't remember), lost a rib to a different cancer altogether, an eye to I still don't know what (the other eye's missed being blinded twice now since...), and lost my mind for 2 weeks to a reaction that almost reduced my chances at relapse to 0... The side effects from that last one alone, the drugs I'm still on and the constant threat of those seizures returning, still bear heavy on my mind... not to mention the major side effect of this all - the Graft Versus Host Disease that turns me into a child, cursing, screaming, pleading for the pain to stop, most nights due to the cramps.  
I've had over 300 bags of blood products infused into me, one that nearly took my life, 2 that have saved it (the bone marrow transplants). I don't even know how many appointments I've had. I STILL have monthly infusions, still go to monthly checkups with 3 monthly, 6 monthly and yearly ones thrown inbetween, and currently have 8 specialists looking after me.  
It's changed me from this; 














to this... 

















The isolation after being so self-conscious due to cancers' changes, made life dreary, and lasted months before I developed the mentality that got me through it...


The torture of losing friends, over and over, made me question why I even bothered... living.

The pain I still endure every day sometimes that makes me feel the same sometimes...

And it just keeps going on... 



There's so many different ways of looking at all that...
And I bet immediately, you went to the bad...


Being told you have a 10, maybe 20% chance of surviving at 17? A relapse? ANOTHER cancer? Your disabilities? Dude... that's horrible... 



I mean you could also think, "Wow.. you had 5 marrow matches? Many don't even get one (that's something YOU can change - click here to find out how) You've had, and met some amazing doctors and people in your life... you've learned so much from this... you've grown from it all. You're so blessed!"



If you asked me if I feel blessed or lucky, or if I'd do it all over again, my answer... 
would change. 
Depending on the day. On how I felt. On how much pain I was in... Or how much my depression prone mind was affecting me...


But overall, I am a happy guy. The way I dealt with it, by taking a step back, looking at where I was and then realising, when I didn't have emotions stopping me from doing so, that it only made sense to take the path that led me to success... To view the world in the good light, which is always there, and bend my attitude to focus on that so I'd have the best chance of being happy.

It's made me a man who sees opportunity, everywhere, even where most people see dead ends. 
It's made me able to laugh at the traumatic stuff I've been through, able to learn from it, and try to help others do the same, rather than being scarred. 
It's made me thrive, made my desire to help others a need rather than me curling up in a ball of my own misery...

At least, it's made me that... most of the time... 


The times I'm not can be horrible, with spells of utter depression that have lasted months...
leaving me numb, self-doubting, sometimes, suicidal,..

The grief I talked about here is just part of that.
When I'm cramping, and have been for hours, and I feel like I can't do anything, that this body I've been given isn't mine, and isn't worth it... you can understand how I don't really see much point to this all. 

But if you asked me how I felt today... 

I'd say Thankful. 

Not so much triumphant, ecstatic or gleeful... Though of course, there are hints of that.

Thankful. 

I have suffered, and in the days up to writing this post, I wondered if that's what I'd be focusing on as I wrote this. But no... It's not. 


I'm thankful for the doctors I had who not only gave me premium care, not only went above and beyond the call of duty to keep me safe, not only listened to me, getting me the medicine that's probably kept me alive, but also gave me the words that made me realise I had a CHOICE in how I viewed life. 

"the good news is, you're 17 and you have leukaemia..." 

I'm thankful for the nurses I had, who not only were the doctors, the real healers who'd look after me, administering the poisons that brought me misery and bringing me the meds that relieved that, but also be my confidants, carers and friends in all this. My angels. Who I couldn't visit today (I've got an infection I don't wanna spread to other critical patients) but would, if I could, give them the world for the comfort and happiness they brought me in the hardest times of my life... something they do for every single person they care for.  




























Me at my 18th birthday, when I was feeling so down and out about being THERE of all places, and at my 22nd, when I was told I had a THIRD cancer and needed surgery.
Both times, these amazing angels picked up on it. Both times, they threw me a party. Both times, they showed how much they cared. 

But what I'm thankful for most, is my family. An eccentric, funny, spontaneous father who'd always be able to make me laugh; something you need in tough times...

A brother, who's given up so much for me, and continues to do so Every. Single. Day of this young life, despite my being the biggest, baddest, most dickish troll ever... 





And a mother, who's done, and would do anything and everything for me. Who's slept in a fold out, often basic chair for months of her life so I didn't have to move that metre and a half to my phone. Who's had to watch me go through hell, ICU, and so much trauma, helpless, unable to make a difference as I did. Who's always there for me, who takes so much of my crap and somehow still somehow not only loves me, but laughs about it, and inspires me... sometimes even as I'm berating her...


just one example of how my mother, hell, any mother, will be the most selfless, loving beings you'll ever encounter.
just wow...

And I'm thankful for you. You guys who've read this, spread it, the friends who've kept me happy, those who've allowed me the privilege of coming into your lives to help, and just be there. 

And I will do anything and everything to try an make the most of everything I've been given... Starting with this;

My idea, trying to hack into the billions of hours we spend online and make good come from it.
to try and help those we love to watch keep doing what they do, for a living
to try and make it so easy to help people, by just opening an app, or loading up a site, you can change the world.
Tell anyone you know who entertains to join at www.playwel.org ! They won't regret it. For sure


My only wish, is that everyone be as strong as they possibly can. That they learn from me and my experiences and not wait for tragedy to strike, or circumstances be changed to become the best possible version of themselves. That they be able, and willing to help those who are struggling... That's what my new charity, an app/site - PlayWell, is all about. 


And look... if you can do that... then you've made this guy on this day, happy. 

Thank you. 
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My Second Third Rebirthday.

My Second Third Rebirthday.
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No that isn't a typo. 
Yesterday, the day before and today has been my second, third rebirthday. 

Confused? 

Well it makes sense. See, 3 years ago, on the twenty-eighth of February, a bag of murky red fluid was put up on my infusion pump in the depths of St Vincent's Hospital. These cells were extracted from the arms of a stranger, transported 4000km to my room to be given on that exact day. 

Thing is, I had a reaction to that bag of stem cells mixed with white cells and the occasional platelet, leaving me slowly puffing up like a balloon as puckering red rashes appeared all over my body. The doctors tried every different drug they could before finally listening to me, the patient, and using what had worked before (funny story about that, that still gets Dad mad to this day) to get the cells in. If they weren't done by a certain time, I'd be stuck in this awkward position of having no bone marrow while having to either wait a few weeks for the kind, 59 year old gentleman who they'd tapped to replenish himself, or a few months for another donor (I was lucky enough to have 5, when half don't even get 1) to be screened and approved as a match. Not ideal. 

By the time it was done, it was March 1st. 

So my transplant, the thing that's brought about a completely new me (stem cell/bone marrow transplants are the only way you can change your blood type!) happened from the 28th of Feb to March 1st. Naturally, the last few years, I've been milking it, and asking for 2 presents (and 2 cakes) to celebrate my, technically, 2 rebirthdays. It's actually 3 if you count my first transplant (that happened in September 2011). 
This year, with the leapyear throwing another entire day in the middle, it's gonna be 4. 

So I'm gonna have 5 birthdays this year. Better get 5 gifts *hint hint mum*.,.

But this/these ones are the most special...


The second, worst day of my life

I had to live it... All. Over. Again.  


When I relapsed a year after my 1st transplant, my doctors were already pessimistic about my chances going into a second transplant. After I developed an allergy (that left me hallucinating in ICU for a few weeks) to the best immunosuppressive drug that's vital for transplant, they were seriously recommending palliative care as one of the options... 

That relapse was a slow process for me. My counts had started dropping in June, 2012, and for a long time, we weren't sure why. My bone marrow appeared almost normal. No other sings of disease or infection were there. My doctor was stumped. He thought it was a bone marrow failure, that my donors' stem cells couldn't produce cell in my bone marrow anymore. We were getting second opinions from everyone we could get our hands on as I slowly moved from 1 transfusion every now and then to 3 a week, plus injections to boost my white cells. We got 3 opinions from "world leading haematologists" in the US through mum's work. And they all said the same thing. 


Relapse. 

On the outside, I was in a state of denial... 


ANYTHING But That.

My parents were baying for answers. I was actually in some kind of shock, in a mode where I didn't really wanna know, just living life in emptiness as I waited for the balloon to burst. As I got tireder and tireder, as time between appointments got shorter and shorter and as I felt the palpitations of my straining heart grow stronger and stronger, an impending sense of doom came over me. I knew in my own heart that this was it. 

But I kept on doing normal things anyway. Going to uni, playing basketball, trying to ignore that little voice in the back of my mind that was growing stronger and stronger, in line with my body's slow deterioration. 

A biopsy in October confirmed it. It was happening. My chances, this time, less than 10%. 

And at that moment, everything I'd done til that moment fled my mind. My happy-go-lucky attitude, my focus on my health, this certainty I'd had after going through all this that I'd get through it... my composure. All gone. 

What Was All That For???
Why Now???
I'd done everything right... WHY ME, AGAIN???

I stayed that way for weeks. A cycle of going from shock, to feeling numb and feeling angry. 

But after a while... I took a step back and wondered, "What was all that accomplishing?" 

Nothing. 
Except making me feel worse. 

"What should I do instead?" 

When I asked myself that... The answer was clear. 

Prepare for that next step. And try my all to do anything to make it work. 

But unlike when I was diagnosed, I didn't wanna lose the anger. I made it work for me. 

I scoured the internet, my library, journals... looking for anything that could help me, anything that could be the answer. I started out looking for the real answer. As if this wasn't it... Probably the denial. I remember trying to convince my doctor I had somehow contracted Dengue fever, and that that was what was causing my low platelet counts... 

But when I got back on track, as I was looking through anything and everything that could help me... After weeks of using my newfound year of medical knowledge to try and understand the disease and find logical treatments or ideas that could illuminate one way to go, I started looking at the drugs they give for leukaemia usually... And if any could be used in me again. 

And that's when I found out about Azacitidine. 




I didn't just find it... I proposed a mechanism of action of its working post transplant to increase the immune effect bone marrow transplants work on, that my doctor couldn't refute. And that drug, after my second transplant, is probably the reason I'm still here today. 

I was extraordinarily lucky to get the drug in the first place. My doctor wrote in, using a loop-hole he found in one of my first biopsies to argue that I did qualify for it. Hell, I was extraordinarily lucky to get the option of having a second transplant in the first place!!

I'm extraordinarily lucky to even have been here. To have an amazing family who puts up with my crap, as well as my health. To have doctors who've helped me so much, medically, and as friends... nurses who are second mothers and fathers, a medical school that wants me to succeed and some special friends who make it all worthwhile. 

And I'm lucky to get to this point, where my relapse rate is less than 1%. 




Ok I got some pretty awesome news from a haematologist I saw last week =] The last time I saw him, I'd been told by my...
Posted by Nikhil Autar on Wednesday, 1 July 2015



Holy Shit!
I'm Cured!!!!!


I know I'm lucky to get here... But I don't always feel so lucky... In fact... the last year or so in particular... I've hardly felt that at all. 




I lost an eye, I nearly lost the other, my treatments got harder, while getting less and less effective, my cramps got worse... I developed a third cancer, I found out (recently) my nerve damage that's causing my daily, debilitating, cramping is likely to be permanent... 
There's not too much to cheer about... 

I'm doing everything I can. Often, I can't really do anything... I'm STILL GOING THROUGH THIS SHIT after 3 years!


And I'm not sure it'll ever end... 


I hate watching a basketball game, or even kids running down the street, knowing I can't do any of that. I hate that I can't go and do the normal, or even basic things that my friends cn. I hate that I can't work on the things I should be able to, or that I can't put my all into them. 

And though I keep taking that step back, and reminding myself that that doesn't have to limit me, that I can still do the one thing that matters; THINK and that my new normal can be better than the old me if I think about it that way, that doesn't stop the pain I know is coming, the struggle to do any menial task or the burden it puts on my family who deserve much more. 

It sucks. And contrary to outside looks... it does get to me.   




But I realised something the other day. Something I've realised a few times, and kept stored in my head, only to forget about it next time something goes down. It's this. 

"I was feeling really horrible; had minimal sleep (the cramps are keeping me up again), forgot to bring my creme to hospital, leaving my skin feeling crappy and overall, just feeling like i was trapped in this shitty body. But after joking around with a patient (he was doing a walking test, going back and forth over the length of the clinic... i asked him if he was lost) and the cleaners... i suddenly found a reason to smile again. 
Goes to show that you can be much happier if you focus on others rather than yourself smile emoticon
I'll remember that for next time!"

"You'll always have a second way of looking at things. When you come to some trouble, when you're not happy, when you're scared or when you're doubting yourself - if you can take a step back and question all those things - you'll be able to see that. 
I guess sometimes it takes more than just that to get back to you. Especially when you're in pain for so long. Especially when you're depressed.
When that happens, and you find something that helps you get out of it - you need to REMEMBER THAT. What causes it. Write it down. Tell others around you about that. And next time, if you find yourself feeling confronting the same thing, you'll get through. With much less pain.
These systems are what keep you happy. It's what can help you get out of deep, dark holes. It's what can help you succeed in life. It's what can keep you sane.
And I'll definitely remember that for next time."

And applying my own logic to myself... I guess the last thing I should talk about on this day is someone other than myself. 

These amazing 2 men who gave up a few days of their lives to give me a second chance at mine. 

I've talked about how bone marrow transplants - on the donors' end - really aren't as hard as people think. What with the non-invasive swabs or blood tests that allow you to get onto the donor registry, and (in the 1/400 chance you're called up) the peripheral stem cell collection procedure, which is pretty much a slightly longer blood plasma donation, it's easier by far than what the wider public believes. 

But without the efforts of people like these, I, and thousands, possibly hundreds of thousands of people, would never have gotten another chance at life. 

YOU could be one of those people! To find out how to sign up for your local bone marrow donor registry, and more about the procedure - click here!

And finally - thank you guys who are reading this.

It's been a long journey. But you've made it better. The chance to help others while often only being able to sit around at home is something I've been blessed with. And be sure... I'm not gonna stop, nor am I gonna waste this opportunity I have.

Anything you guys ever wanna talk about - I'm just a message away -- Details on the side of the page - or just message me here: www.facebook.com/musingsofamedstudentpatient
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