More Than Our Story

Murali

Murali shares the story of his sudden diagnosis with chordoma – a rare form of bone cancer and the life-changing surgery that would be required. He talks about his ‘delusionally optimistic’ outlook on life, how he found support throughout his journey from his nurses, doctors, surgeons, family, and friends, and how it’s essential to recognize shame and vulnerability. He shares his story to let others know they can do it too!

Highlights

It all started... one fine summer morning in Vancouver, Canada. I was playing tennis early morning, maybe 7:00, 7:30. I started feeling some kind of pain on the kidney side of things.

All I remember was getting into emergency, going through the process off getting some pain meds... they also did a CT scan. That was the first time I saw some kind of fear in the doctor who was attending me. That’s not normal right. You go into an emergency, they’ve probably seen everything.

Then he said, we've to do an MRI. There is a mass that we can see in the CT scan, but we are not sure what it is... Then I got an MRI done, and they found out there was a big, tumor. Nobody could recognize what it was. They book an appointment with the doctor, and I think it took about three months to get to that appointment.

I found out it was one of the rarest forms of bone cancer called chordoma, and that's when your life just changes.

You are going through all the emotions, the fear, the anger, and the three months between finding it out first and actually conforming, that was the real nightmare.

You question everything, right? Why me? Why is this happening? What is it going to be? I thought, maybe tomorrow when I wake up, it would be gone. Everything was a dream, or a nightmare.

"We can work on this. I can get you into a surgery in September". So now the time between August and September, I'm trying to find some normal. I'm going back to playing tennis, talking to people.

This is when I met somebody who recommended some TED talks to me [on] shame and vulnerability... because, this was not just a cancer that I have to deal with. If I had to go through with the surgery, there were a lot of side effects, permanent side effects.

On balancing work and personal life leading up to surgery:
It was definitely hard to balance. You still have to pay the bills... I think it was being surrounded by a lot of positive people. And generally I'm a positive guy. I think that also helped. I my friends call me delusional optimistic because my positive is to a point where people are like, how can you even be this positive?

I think being that delusionally optimistic helped me to mask some of my failures or some of my fear. But again, when you go to bed, you go to bed alone. So none of those things matter. You’re still worried and sad.

I talked to a lot of people, people like Mark Opauszky... He said, "Murali, I'm not going to say that you're going to be a victim. You need to be sad. You will get through it". He gave me the tough love, but then somebody else gave me the compassion that I needed.

I talked to a few people who were living with those permanent nerve damage side effects. I did a lot of research.

I was talking to [a life coach] who introduced me to TED talk by Brené Brown about how men try to be strong. How we like to put that face and we don't show shame and vulnerability, and that really resonated with me... and that was a switch. When she talked about shame and vulnerability, I was able to relate to it. And she said, don't put that mask on... and that day forward for me was - it happened: I’m the chosen one. Now, what can I do to deal with this and fix it?

We have to trust in the system, whether it's family or friends or the professionals who are helping you; there are going to be good people and bad people along the way. How do you align yourself with those positive people who are going to help you?

[Chordoma] is supposed to be one of the rarest forms of bone cancer out there... Based on the research I found... and the surgeon said, one in a million people get this... So, there's not a lot of research done on this specific cancer... And out of that one in a million, almost 70% of them get it in their cervical... I'm one of those 30% who get it in the sacral.

I found out [the surgery] was going to take about 12 hours and 5 different surgeons.

The tumor was growing on the sacral part of the spine, S1 to S5 is the very bottom part of the spine... [they] needed to be taken out.

Losing bladder control, bowel control was just something that I could not imagine as a permanent nerve damage of the surgery. You go through all these things.

At that time I have to put my belief in somebody. I can put it on God, or I can put it on the surgeon. I took my bet on the surgeon.

When you're signing up for the surgery, you are signing a document that said you may not wake up. So if you wake up after 12 hours, there's nothing else for you to do other than laugh and say you made it.

I was telling myself, looking at the mirror, "Dude, this is the last time you gonna pee without a catheter, right? Like this is the last time you're going to use the bathroom the normal way".

This is the first time I was on opioids. The first 3 or 4 days were not bad... because I had an epidural attached to my spine... But when they started removing the tubes one by one, and the epidural came out first. That's when the real [pains] were starting to happen.

At some point, certain medications react differently... I think there was some mistake; I was given extra medication that I shouldn’t have taken, and I was hallucinating.

And the surgeons and the doctors, without them I don't think I would have come out of this in the way that I came out, to be honest... overall, they are the real heroes for me.

I think on day 16, they tried to get me off the bed, but just getting me off the bed was a two-hour exercise.

The [next] 2 to 3 days was just getting up and standing, maybe walking 1 or 2 feet inside my room.

They're keeping a close eye on me. I've donated my tumor. I work with the research team on questionnaires and updating my current process every few months, so I'm really involved in that process.

Physically, I feel I'm 100%; I'm back to where I was. But mentally, I'm 100% some days, I'm 10% some days. Trying to find that balance has been the challenge.

There are days that fear hits me randomly... Initially, I was looking at five years from now, ten years from now, twenty years from now. That was the worst thing that I did to myself. Every time I think about the future, it scares me.

Because I use intermittent catheter and the colostomy bag and everything, I have to order these appliances every month. My biggest fear is what happens if there is something in the supply chain, and I don't get my catheter? What will that be?.. So mentally, that is my challenge.

Physically, I'm 100%; I play tennis, I hike, I work out, I can lift weights.

After the surgery, for the first few months, I couldn't even lift a grocery bag. When the physiotherapy (started), I couldn't even do one squat. Now, every day I wake up, I do meditation for ten minutes. I do some workout for 20 minutes, I walk for 30 minutes. This is my morning. Then during the day I try to walk anywhere between 6 to 10km and try to play tennis right and hike.

I'm so lucky and humbled to have these people in my circle; that was my biggest thing.

One thing I do want to touch on is withdrawal, and the process that happens after a surgery because that is where the close circle comes into play.

When I was meeting my surgeon and the pain was going down, the recovery was getting there. And then when they said, yep, it's time to get off the medication. Me being me, nobody to blame. I went cold turkey on one medication that I thought was just given for nerve damage. Little did I know it was also an opioid.

You wouldn't believe the tricks it plays on your mind. Literally. I started getting all the side effects of withdrawal without knowing I was going through the side effects.

I'm not saying opioids are bad, but how do you ween out of that? Learn a lot about it because that is one thing I wish the medical system would have helped me (understand) a little bit more.

That is something that I want to advocate and talk to people saying that (this) is a critical thing. Withdrawal is going to affect you; surround yourself with people that can help you with that, both physically and mentally.

I used to look down on people with drug addiction, but now I can completely understand the reason for what's happening in our country and our cities. It's not by choice. Some of them are real reasons, and we need to feel a little bit more compassion.

I know I can't change the world. I'm not going to even try. But if I can put a smile on somebody's face, if I can make them think for a second that they can do this, they can go through this process or they can support their loved ones in this process. That's the impact I want to make.

I don't want my story to be about me. My story is not about me. My story is about others who are going through the same thing.

Let's coin the phrase ‘delusionally optimistic’. It's okay to be delusionally optimistic.

If we can impact one person, we've achieved what we set forth (to do).

Picture of Daniel

Daniel

Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit. Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.

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