A Great Surprise from Great Friends! Things like that are what you need sometimes...

Last post:                                     My Story:                                         Next One

So I was at home, very tired, as I went on a fishing trip yesterday on the boat (it was great, even though I ended up cramping for the rest of the day =P I'm not at my best and it was a 6am start!), but I had to go somewhere - hospital, not as a patient, but to meet  a friend actually.

And god... I couldn't be stuffed... And it probably wasn't healthy. But I'd made a promise. And I knew I'd actually have a good time. So I was texting a friend, ready to go, when Mum came in. She'd had a day off, and was eating food when she saw me getting up.

"No Nikhil, take it easy today." she said through a mouthful, rushing to sit in the chair beside my bed. "It's my day off today, stay home with me. C'mon, Nirav's making lamb curry too! Oh, and you had a big day yesterday, you need to rest."

"Jeez mum, I gotta go!" I said, dragging myself up, shoulders slumped. I wasn't feeling my best but I had made a promise. 

After a bit more insisting though, she lured me into conversation, urging me to stay, annoyingly, inbetween topics, and eventually, I gave up and texted the friend saying "I'll catch you next week!" before slumping back into bed, muttering under my breath about how annoying it was to have such a clingy mum...

Then I heard the door open. And a few voices. 
Odd... Dad had just left for Melbourne for a family function. Nirav, my bro, he wouldn't have gone out... he was midway through cooking...

Then Nirav himself popped into the room, too soon after the groan of the front door (he couldn't have gotten up that quick surely), absently checking in, a slight smile on his face for some reason.... 
It was clear, at least, that someone was home...

And then these guys popped in, handing me this mysterious bag - a gift - and I couldn't stop smiling!

It was my basketball buddies! Since high school (I got sick in the last year of it), it was hard to catch up with anyone - we were so far away, broken up and separated, in the new friend groups we'd developed at Uni and Work. 

But a tradition had begun, and I'd joined in on it, of always catching up and playing basketball for HOURS on end in our mid-semester breaks. And it was glorious! The best times of high school came back in those few hours, where our less fit versions of our young selves tried to resurrect our mostly lost talent.

The last few ones though I'd missed. You know... things like a third cancer popping up outta nowhere and nearly going blind tend to impede my perfect jump shot and awe-inspiring dunks... 

I REALLY wanted to go! But I knew I couldn't, so I'd always post "Sooon!" or "Devos!" when that notification came up on Facebook...

But hey! They'd brought it to me this time! And they'd also gotten me the perfect gift!

A PERSONALLY SIGNED Steph Curry (the MVP of the NBA this year, possible/probable contender for the greatest shooter EVER) Jersey!! 

Not by Steph Curry... by my basketball buddies. but hey, I'll take what I can get =P 

The gift was perfect not only because my raw shooting talent and touch at the 3 point line has been compared with some of the greats, but because Nirav was making them, lamb curry (watching Jerry - the strapping lad on the right - barely gulp it down, even with 10 spoons of yoghurt after that, and sweat from the heat was classic!), because I loved the way the team played and most importantly - because the Number - 30 - represented something amazing!

It took my a while to guess why. They kept urging me to anyway... 

"Is that Shaquille O'Neal's number?" When I was in year 7, I'd had my growth spurt before the other kids, and was, let's say, "well rounded", so I had the nickname Shaq on the court. Maybe that was it.  

"My scoring average?"

"How many girls I'd been with?" (to which I had multiple scoffs, and cries of "Bullshit!") 

The actual answer took me a while. But with a few hints, I'd got it. 

It was 3 - 0. My Record against Cancer. 

Bloody awesome! A LOT more symbolic than this other gift I'd gotten from mates during chemo... And sooooo cool of them! I'm still smiling as I write this.

I'll keep it forever, that's for sure - never to be washed again, to keep their signatures on. I know they're shaking their heads as they read this (I used to always be known as the guy who sweated so much he could slip between players, so an unwashed shirt would be POISONOUS almost I'd say)... it's just how I roll Haha!

There's another awesome aspect to this gift though.... They'd been planning this for the last few months. Some of you who follow my Facebook page may know that I was in hospital during my birthday... again (I've also spent my 18th in hospital, alone almost) and that despite the suckiness, a few acts of kindness made it an amazing day... Especially ones like this.

 (do click and read it - the full post is here. My nurses gift to me as soon as it hit 12, straight after I'd mused about how sucky it was to be stuck there on the day. This, and a shot of morphine for post surgery pain. What more could you want?)

These boys had actually planned this surprise for me then! But circumstances had stopped either me from being there, or them being available. 

And today was the perfect day. Not only because I was missing out on some of the best fun that was our quarterly basketball meet-up - but because there's been tension going on at home for a bit too... 

It's hard being a chronic patient... I've talked about that a lot. But it's just as hard - if not harder - being the carer of one. "They're the ones that have to be stronger than the patient, to hold them." as my mum said, perfectly. Which is hard to do when you're feeling helpless as your loved ones go through pain...

And the last few weeks especially have been especially painful. The cramps that have plagued me for the last year and a half have come back with a vengeance after one of my treatments (Ironically, that treatment is supposed to take away the cramps... Hopefully in the long term...) started. I had 2 doses before the surgery in August, and 2 doses afterwards. And each time... the cramps had gotten ten times worse after them! The next few days after a dose, I'd LITERALLY cramped 24/7... I didn't get any sleep then. Even now, every time I get up, I cramp, and new areas are involved, like my neck, and possibly even my esophagus, close to my windpipe. So I'm not only cramping, I feel like I'm choking too... 

In this time, I've often reverted back to the level of a baby again. I'd scream out "WATER!" and someone would have to get it (I couldn't get out of bed - hell - I couldn't even roll over and sip it half the time. I have a pack of straws handy by my bed), "MEDS!" and they'd sort through the pile of them on my desk and give them to me, "FOOD!" as I found myself hungry, at the oddest hours, and unable to get it...

And they'd be there. Everytime. Sometimes after a bit because they were busy (or in the case of my brother, playing games, which I'd scream at him for afterwards, as it'd often leave me no option but to hobble over, crouched in pain, to get what I needed)... but they'd not JUST be there, they'd do awesome stuff like this today to keep me HAPPY too!

It's the other stuff though... the driving me to poker (the one and only thing that gets those annoying cramps off my mind), to dropping me to occasional adventures with friends, the annoying "Get the remote!", "Find my phone!" and, the too-usual "Can you find my <insert item here>", NOW please!" - that they were understandably frustrated about. 

But they didn't get that I was frustrated too. That these things - I needed them to not just feel normal, but BE SANE. That I WAS giving up things - I could've gone to hundreds more parties, events, games in that time frame but I didn't to keep them happy, or because I was afraid of their annoyed reaction. And they don't realise how crappy it feels to see that begrudged, annoyed face when you're in pain, thrashing around in bed; when you NEED someone to help... and they hate always being the one to do it.  

They've said some horrible stuff to me. And I've said horrible stuff back. I've screamed at them... too many times.. and it happens over and over again, as the annoying disease (graft versus host disease) beneath all this threaten to bubble up and burst in our faces week on week, month on month, year on year... 

But it was THEM - as well as my friends - who made this happen. They kept it secret for a good 2 months, planned for it to happen on multiple days, only to have it knocked back because something came up, and made it happen today... after we had a HUGE fight last night. 

Many people... possibly even me, would stay angry, cut the cord on something awesome like this, even HATE someone after that exchange. But not this awesome breed of people... not my awesome carers. 

I take them for granted, and keep being horrible WAY too much. But I'm changing... slowly but surely, things I outlined here... and I'm also resolving to keep doing that - and take the next step. Not lean on them for those extra things like poker nights and parties. Maybe I'd miss out on some, and be trapped at home... but hey! In the end I, my thoughts, my mind, determine whether I'm happy or not. And, as I always say - there's always 2 ways of looking at things. 

Missing those things will give me time to work on better stuff! Like this. 

But all in all... I'd like to say thanks. Not just to Jerry, Eric, Adrien (the boys in the photo), Lucas, Harry, Tony, Nick and Michael (the ones who signed and chipped in for the jersey itself!) - but also Mum, Dad and the Bro for doing this to make me happy. Even though sometimes, I don't deserve it.

Here we go again... Cancer For a Third Time... When will it learn IT CAN'T MESS WITH ME!?!?

 Last post:                                     My Story:                                         Next One
So... what's been going on you ask? 

What's with that chemo drug you were talking about on Facebook? I thought you said it wasn't for cancer... and now you posted this?

Well, let me explain. 

Recently I started a "chemotherapy" drug, but not for cancer. 

It's called rituximab  - and it's not only in brackets because it's technically, in my case, not a chemotherapy, as it's not "A chemical agent used in the treatment of cancers" (it was given for another condition I have - a side effect of my bone marrow transplant; chronic graft versus host disease. I'll explain it in detail in a later post) but because it's mechanism of action; the way it works is not in line with most chemotherapies.  

Sure, it can have some of the nastier side effects of chemo - nausea, low immunity, diarrhoea; plus a few others (the reaction many, well, most patients have to it on the first dose can kill if a close eye isn't kept on it), but many people tolerate it pretty well beyond that.  

Me included, so I thought after the first infusion. My reaction to it was mild - only a bit of cold/cough symptoms and a slight tightening of the chest. But over the next few days... the worst side effect came on. 

The cramping. 

Now I've had cramps for a while now; at least 1 and a half years. Ones that come on spontaneously that strike anywhere, anytime (though usually more severely at night), and fast, but they leave me in pain and anxiety for ages. They've were bad enough to affect my overall outlook on life and whether it was all worth it for a while (I talked about how I deal with that here - don't worry, I'm past that now) but since starting this medication... which is supposed to reduce them over time... they've gotten even worse. 

The two days after my first dose, I cramped LITERALLY all day. In the arms, legs, shoulders, abs; everywhere. After the second dose, a week and a half ago now, I didn't stop cramping the entire week. 

But there was another side effect of it that I also was starting to notice. Shortness of breath. And one night... that got even worse than the cramping. The day before what should have been my third dose of the drug, I got up and, within a few, cramp-filled steps, was gasping for breath. 

We were on high alert. Any odd signs, even one as tiny as a new cough, was cause for immediate concern and, if outside hospital hours, a trip to emergency, we were warned. It was 7pm... I'd just won a game of poker. So off to emergency we went. 

Just another day in the office for the masked bandit...

Haha played 2 big tournaments in this mask to protect me from infections. It also gave me an extraordinary poker face.

Once we were in there and seen we were given a range of possibilities of what it could be and what they were looking for. An infection of some kind was possible; but given my lack of a cough or fever or any other sign of it, unlikely. A pericardial effusion? Maybe because of this mildly abnormal ECG scan... A pulmonary embolism... a detached clot lodging itself in my lungs, though unlikely, had to be ruled out. Whatever it was, it was clear that we needed a scan more thorough than an X-Ray. So I was booked in for a CT. 

So there I lay, back in my familiar bone marrow transplant ward, only 2 rooms down from where I'd received my life saving bone marrow donation, awaiting the results, when this new doctor burst in and told me this news.

"Well... we got your CT back... Though it's clear of any infections or PEs, there was a lesion found on the forth rib. The radiologists have said it has the features of a chondrosarcoma." 

For a second, I sat there frozen, taking it all in. A few years of medical knowledge and intuition came into play... and the cogs in my brain started whirring... chondro - something to do with cartilage... the tense look on the residents and medical students' faces behind me meant something was up... sarcoma... a cancer... of the  connective tissue. 

Questions went racing through my mind, and before I knew it, firing off from my lips, as my confused parents looked to me and the registrar in charge. 

"How do they know it's a chondrosarcoma?"

"Well... they don't definitively.. but there is some erosion in the bone, one that was there a few years ago, and it matches the features of it." 

"Could it be something else? An infection of some kind eating away at the bone? Some bad scan? Is it just a hunch?"

"Well probably not the former. Infections don't look like that on scans. The latter... well... we're still not sure. We'll have to biopsy it to see." 

And with only a non-committal bye, she left. Leaving my confused parents and I wondering what the fuck just happened.

When I told a friend... he just said "You can't catch a break, can you?" It certainly feels that way sometimes...

Still, it's weird though. I didn't have any pain, or sudden weight loss associated with this sorta thing. Not even when they poked at the site of it. My haematology (blood doctor) team and the orthopedists weren't convinced by the scans at first, so they were sent off for an MRI and a full body scan (to both get more details on that lesion and see if there are any others elsewhere. 

And that bone scan confirmed the worst. There is osteoblast and other metabolic activity in that eroded bone. Meaning that it is some form of cancer. And the orthopaedists were saying... given my history of acute myeloid leukaemia... that it could be a myelosarcoma. The Acute myeloid leukaemia, my original, EXTREMELY agressive cancer, could've been back, this time in my bones...

My reaction to this? Exactly the same as here:

Yeah... I may have cancer again. But, just like when I first got it, just like when I relapsed, just as I've done in every challenge, when pursuing any goal, just as I've done ANYTHING in life... I took a step back, put it all into perspective and decided to focus on what I could control, on what could help me, rather than all the negative emotions, worries and thoughts; than all those things I couldn't. Because, as I always say, you'll always have a second way of looking at things. And you will ALWAYS be able to choose how you deal with any situation. No matter how hard it seems... Indeed, once you see that second, more positive, constructive path... taking it becomes the only LOGICAL thing to do.

I went out and looked at all the evidence of this being the worst case scenario... my original leukaemia coming back. There wasn't much in the way of evidence, bar a few isolated case reports of this happening in AML patients, and all of them had these bone manifestations at initial diagnosis, or relapse in cases where patients hadn't had bone marrow transplants; whose main purpose is to maintain a constant immune barrier to cancers coming back. And given the fact that there was a small sign of this lesion there a few years ago, and the aggressiveness of AML - the chances of it being that were tiny.

And luckily my haematologists agree. **Phew** In the off chance it is that though... I've still got heaps of options. Even if it's the worst worst case scenario... I've got one of my own. Over the last few months I've been looking seriously into cancer vaccine immunotherapies - thinking of a way of applying them to a wide range of cancers. There aren't many therapies that attack all cancers... my methodology may well do that - it uses your own tumour cells to prime your immune system to recognise and kill your cancer cells. Perfect - because unlike many personalised therapies, such as this one, this doesn't require huge imput and study of patients' own tumour profiles and the subsequent design of a drug or therapy for it. A version of it has even been used in my disease - AML - with decent succcess. And my methodology takes into account many of the shortcomings and recommendations of that one - and adds more from others. Plus there's another innovative component that'll get another pathway of the immune system involved; and all of this is cost and time efficient. My own idea may end up saving me...

But the more likely, less sinister case - that it's a chondrosarcoma, or some other, localised bone cancer I also looked into. And the good news about that - the 5 year survival rate for that is 90%. There may be post surgery radiation and chemo involved. Given my current situation, the graft versus host disease of the skin and other issues... it may be a bit more  confusing, it may take longer than most patients. But hey! I'll pull through!

I guess you could call me unlucky... getting a really bad... agressive cancer, relapsing with it, getting a precursor to a different, just as aggressive cancer and now getting YET ANOTHER CANCER isn't exactly something you'd celebrate.

But when you take a step back and think about it from another perspective; I'm extremely lucky. Because if I hadn't been cautious, and come in when I started getting that shortness of breath, if I hadn't had that CT scan... we may never have found this til it was big enough to cause me pain, at which point... it could have spread elsewhere. where it's virtually untreatable.

You always have a second view of looking at things. 

So why not choose the one that leaves you happiest?

Well... that's good and all. But that doesn't change the hard part... the treatment, though. I guess we don't really know the complete details of it yet. My orthopaedist, who specialises in bone tumours (in fact, he's happened to treat a few people I've met through this blog, as well as a good friend I know in real life - so I feel very safe in his hands!) is saying that we should just remove the segment of the rib and biopsy it later to find out exactly what it is. Why go in for 2 surgeries, and have the risk of causing swelling and facilitating spread of potential tumour cells when you're sure it is something that at the very least will progress to cancer, he argues. I guess he's the specialist here, and everyone else is, so I'm inclined to agree.

The surgery is on tomorrow. Or failing that Thursday. And it's gonna be painful as hell, I've been told. Not just the wound, which is gonna probably take longer to heal given my skin disease and steroid dosage, but the rib resection itself, which'll probably leave me in pain every time I breathe. The cramps I get, which are only getting worse really (another major concern of my haematologists and neurologists now) could make that even worse. Cause they happen in the chest and back - places he's planning to cut into. So that's gonna be... uncomfortable (a word doctors use to say pain when they don't want to say pain) to say the least...

There are some risks, my lung cavity could be pierced, there could be infections that come around with it. 

But hey - I'm in great hands.  And I'm choosing to see this, just as I have every other time, a minor inconvenience that'll lead to me being healthier and happier in the long run. As I've said before here... and as I spoke about here... fear can be paralyzing... 

But it's not only normal to feel that way about things like these... and knowing of, and acknowledging it isn't scary... it's the best thing you could do for yourself. Because when the hard times come over the next few days of surgery and weeks of recovery... I'm not gonna crash down into despair... I'm gonna look at the big picture. What this is all for. And I'm gonna get through it. Like I always have!

Thanks to everyone for those amazing messages and all the concern, and to all those friends in real life visiting too. Keep them going! Cause they'll keep me going over the next few weeks I'm sure! I'll keep you all updated but don't worry - in the meantime - I'll still be busy. I'll still keep working on those projects I've been hinting at. Cause hospital's boring. This may well get me working more efficiently than ever on it (IF I'm not high on morphine all the time that is =P ). 

Thanks again everyone - and please don't worry. I'm in good hands. My doctors, my nurses, my parents, and my own. Share this, or this sentiment around, and I hope it helps others going through their own tough times too.