Life According to Scott



It's a beautiful morning in mid-October. My friend, Scott Simcoe, who you may remember from the profile "Meet Scott," has graciously permitted me to pick his brain once again and ask potentially invasive questions about his illness and his personal life to share his experiences with the world. I have offered to meet him anywhere in the city and at any time, and he has chosen "the slope across from the park by the south-eastern edge of the Notre-Dame-des-Neiges Cemetery" for breakfast. Obscure directions notwithstanding, I know exactly the place he means, which is one of my favourite spots on my way to and from University. He offers to bring pumpkin spice tea and cupcakes, and I am bringing roasted Mediterranean vegetable wraps and a blanket. I arrive fifteen minutes in advance, as is my habit, and am surprised to see Scott coming over the crest of the hill, early in a way I am not accustomed to from my friends. In spite of the cool breeze, Scott is wearing shorts and sandals, as well as a Billabong sweater, his bronze-tinted Ray Bans hiding his eyes. His smile is boyishly charming as we spread the blanket out on a gentler slant of the hill and serve out the food and drinks we brought. Before we can start the interview, there is one thing I need to know.

Many people would find meeting near a cemetery pretty morbid. May I ask why you wanted to meet here?

Do they? I think it's beautiful. I can imagine most people equate cemeteries with death, but for me, they reaffirm life. The people who visit bring their loved ones back to life by remembering them. The types of tombstones they can commission are infinite: the size, the style, the font of the engraving, the epitaph... I think it's wonderful. But enough about me. We're here to talk about me! Fire away!

Awesome. Right to the point. Can you walk us through what happened leading up to being diagnosed with chronic myelogenous leukemia?

I actually had no idea that anything was wrong. It's not uncommon for someone with CML to have no noticeable symptoms. I found out during a routine checkup. My white blood cells were higher than normal--I don't honestly remember the number--and my platelets were a bit low. The doctor scheduled me for a bone marrow aspiration and biopsy a few months later. I didn't even want to think of the possibility of bone cancer. Or any kind of cancer. I kept telling myself that I felt fine, so there couldn't be anything wrong.

And how did you react when you received your diagnosis?

Oh man, it was horrific. Not at first, of course. At first, it was kind of like, "Oh. Okay then." I wasn't numb or disconnected, or even super aware of everything. I hear a lot of people talk about all of those when they get bad news. It was more like there was nothing. The doctor disappeared, the room disappeared, I couldn't hear anything, I couldn't feel anything, but it wasn't numbness. The doctor was obviously used to all kinds of reaction, because she just watched me carefully. It took several minutes for me to become aware enough to start asking questions, but I just didn't know what to ask. We hear a lot about cancer, but no one ever talks about how to react to it. I think I basically just asked, "So, what does that mean exactly?" I didn't know what else to ask, so I just took the pamphlets and websites that she gave me, made my first followup appointment, and left. It didn't fully sink in until a few days later, once I had done some research. Suddenly there was this huge shadow over my life. CML isn't necessarily a death sentence anymore, but it's still scary to realize that your health is compromised.

How has having leukemia impacted your daily life?

It feels like a never ending procession of doctor's visits and blood tests, medication and anxiety. The treatments made me feel constantly nauseous, and I went through periods of being so tired that I couldn't find the will to move. I still need frequent doctor's visits and blood tests, but for the most part, the treatments don't bother me anymore. I'm not careless with it, but I try not to let it take over much of my life, if I can help it.

You've already told me some of the things you did to improve your health. Can you elaborate on them?

I did all kinds of things! Most of them are actually common sense for healthy living. I decided to start being more careful of what I eat. That means no processed or fried foods, no added sugar, and as many fresh fruit and vegetables as possible. I actually went a step further and became a vegetarian, meaning I have to be even more careful with what I eat so that I can at a balanced diet. I started lifting free weights at home, jogging, and doing yoga and tai chi, partially for the physical benefits, but also for the mental benefits. Working out is a great way to get rid of tension and stress and to quiet my mind. I started meditating, too, which I actually enjoy a lot more than I thought I would. I also took up a bunch of other hobbies like woodcarving and Swahili. They'll probably never get anywhere significant, but the point is that I've always got something going on.

Do you think they made any difference in the treatment of your leukemia?

I don't honestly know. I think they did. The meditation helped with the stress and anxiety for sure. But whether they affected the disease or not, they certainly improved my general health, which is just as important, if you ask me. Now, when I'm cured--yes, I said when, not if; you've gotta be optimistic about these things!--I'll be healthy all around!

Was it your decision to make these changes, or was it suggested as part of your treatment?

A bit of both. My doctor suggested that the exercises might help, especially against the fatigue, and that the meditation might help with the anxiety. It's common practice, apparently, for doctors to make those kinds of suggestions. But because there's no evidence that it actually helps, a lot of people don't bother to do it. Which is absolutely their choice, of course, though I think it's too bad that they wouldn't do it just for the regular health benefits. I did join a CML support group and speak to a therapist on my doctor's recommendation. She thought it would help me a lot to talk to people who knew what I was going through or who could delve into the recesses of the mind to untangle any deep-seated issues, and whatnot. It's been great, though. The group and the therapist have helped a lot.

Was it difficult to remain positive, or did the disease help to motivate you to improve your health?

I'm generally a pretty positive guy. I've always believed that everything happens for a reason, even if it takes us a while to understand what that reason is. I don't know why I got CML, but I know there's a reason. The diagnosis definitely gave me the kick in the ass I needed to start living healthily, which I had been wanting to do for a while. So hey, maybe that's why I got sick! So that I could come through it healthier than ever.

Have you had really bad days?

I would be lying if I said I hadn't. It's easy to be positive when everything in your life is going well, but when you suddenly find out that your life expectancy might be a lot shorter than you had imagined... It's hard. And it sucks. And if I need to lock myself in my room and hide under my bed for a few hours very once in a while, well, that's what I need to do to pull myself together. And anyway, I just try to remember that it's statistically more likely that I'll die being hit by a car.

How important is it for you to have friends and family to support you?

It's so important. Unbelievably so. My parents have been amazing, coming to some of my doctor's appointments, helping me find new vegetarian recipes, even just doing yoga with me once a week. My best friend Jake offered to shave his head if I lost my hair--which fortunately didn't happen. They're amazing for my mental health, in any event. They remind me of all the good times and the bad times I've had, and how I can get through anything. Like I said before, I'm a pretty positive guy, but when things do get rough, it's good to have people you can just be with who won't expect anything from you. Silent support is often more meaningful than platitudes.

How has the leukemia affected your view of the future? Have your dreams and goals changed because of it?

The leukemia has absolutely affected my view of the future. You can't really hear "you have cancer" and not think about the possibility of death. And when you're forced to confront your mortality, your priorities tend to shift. I've been doing a lot of travelling lately. I have a list of places I want to visit, and one at a time, I'm going to see them all. My favourite so far has been Croatia. It's absolutely gorgeous there. My long-term goals--to own a Tuscan villa and vineyard and run my own software company--are much bigger than they were before the diagnosis. I just wanted to work for Apple in whatever city would have me. I decided that, if I'm gonna live, then I'm gonna LIVE!

When you set health goals for yourself, did you have a specific goal you were working toward? How important was it in terms of motivation?

I had general goals, mostly. Get healthy. Stay active. Learn new things. But yes, in the short-term, having specific goals helps a lot to keep me motivated. Take running, for example. I could hardly run for a whole minute when I first started. So I trained. I did intervals. I set my first goal to run for ten minutes. Then when I could do that, I set a goal for thirty minutes. Then I started measuring distance. I did my first 5 km in just under an hour. My most recent milestone was running 10 km in under one hour, which I hit last week, thank you very much. Having smaller achievable goals is definitely a good way to encourage you to keep working hard.

Why did you decide to volunteer at a suicide hotline? Did you consider other options?

It's actually something I've always wanted to do. Well, not always. I didn't dream about it when I was five, for example. But it definitely predates my CML. Again, getting sick gave me the motivation to just do it. So hey, there's another potential reason why I got sick: to help people who need someone to listen to them without judging them. I just like to listen to people. I don't like giving unsolicited advice, but if someone asks for my opinion, I'll give it to them. Otherwise, I just like to let people talk. I did consider other options, but this was the one that made the most sense to me.

What is the most fulfilling part about volunteering there?

Talking to so many wonderful people. Even if they're having a hard time, they all have such interesting stories and such hope. That's why they call, in my opinion, to find hope again. I like to think that I give them that. Is that arrogant? But seriously, no matter what their problems are, they have fascinating stories to tell, and I'm there to listen. I've never been suicidal, but then again, I've always been surrounded by supportive people. The people who call the suicide hotline don't have that luxury. And I'm always so thankful for everyone that calls. I mean, I understand that some people feel like they have no other option, but suicide is such a horrible waste of a life, and I hope that anyone reading this interview will seek someone to talk to if he or she ever gets to such a dark place.

If you woke up tomorrow to find that you were cured, what would you do?

Let me think about that for a second. Tomorrow's Wednesday, so I would get up, do my yoga, take a shower, have breakfast, make my lunch for the day, then go to work. It would be amazing, but it would be another day in my life. Okay, to be honest, I would probably get excessively drunk that night, but for the rest of it, I would probably act normally.

If you woke up tomorrow to find that you only had 24 hours left to live, what would you do?

I would get up, do my yoga, take a shower, have breakfast, make my lunch for the day, then go to work. I would want to act like it was just another day, like I would go to bed that night and wake up again the next morning and keep on living. If I knew I would die, I would make sure to call my parents and my friends to tell them I love them, but I would want them to know I was going to die.

Do you have any advice for people who receive bad news, whether it's personal (disease, mental problem, death of a loved one, etc) or if it has happened to someone they know?

Don't give up hope. Things might be horrible in the moment, but find someone that you trust and talk to them. Most importantly, please, please, please, don't do anything rash. If you don't have family or friends that you trust enough to talk to, then see a professional or a call a helpline. We're here to listen, we're here to help, and I guarantee that the world will be a much lonelier place without you.

Thank you very much for sharing your story, Scott. I wish you luck in all of your endeavours, and keep up the amazing work.

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