About Me

Hi, I’m Todd. I’m a film director and writer, and I live between New York and Los Angeles. I was diagnosed with a rare blood cancer, polycythemia vera (PV), in 2008, when I was 28 years old.

The specter of health, doctors, and medicine hung over my life in invisible ways. My father was sick when I was growing up. He had hepatitis C, and he had had two liver transplants, one when I was 13 and one when I was in my late 20s. 

I probably didn’t realize it back then, but I was always very concerned about my health. I believed in hospitals and doctors because I saw them save my dad’s life when I was young. I would get physicals, and I liked going to the doctor. 

Putting My PV Diagnosis in Perspective

My diagnosis made me anxious and nervous. But Dr. Mascarenhas made me feel confident and contained. He made me feel like there was a team behind me. He literally said, “I got you, I got you.” That made me feel cared for. 

I think the idea of having a slow-moving blood disease that may or may not progress is more about living with uncertainty and the anxiety it produces. My diagnosis was like a bomb that goes off under the ocean and touches off all of these ripples. 

Throughout the 17 years of my life after my PV diagnosis, I felt anxiety and uncertainty and experienced highs and lows that were mostly beneath the surface. But for the first few years, I was almost able to pretend I didn’t have PV. I just had to do my treatments: phlebotomies or blood draws, and aspirin. 

Managing My Disease — and Anxiety — for 17 Years

I’ve gotten used to those treatments for polycythemia vera. I do phlebotomies every few weeks and continue to take aspirin.

That being said, I carry around an invisible anxiety. Whenever I feel uncomfortable or fatigued, or if I get, say, a bad bruise on my leg, my anxiety spikes. I’d think, “Oh my God, is it progressing?” 

But Dr. Mascarenhas helps me deal with that anxiety, too. I would text him, “Something’s happening!” and he would reply funnily, “Shut up. You’re fine, you know.” Something that would immediately diffuse the panic, anxiety, or fear. 

I’d say, “Hey, John, I have a big bruise on my leg.” He’d reply, “Yeah, it’s because you’re taking baby aspirin and it’s no big deal.”

My Father’s Diagnosis Helped Me Navigate My Own

Aside from my polycythemia vera treatments, I’ve also been able to leverage what I’ve learned from my dad’s and family’s experiences to help with my own. Watching them from shore, so to speak, enabled me to navigate this system.

I’ve watched my father and family get by. I’ve seen my mother be a sort of squeaky wheel, with her not-taking-no-for-an-answer attitude. She taught me not to be overwhelmed by doctors and leap into action. 

I learned to go, “Alright, something’s going on — so I need to resolve this as fast as possible. Everyone out of my way. I’m not going to wait around. I’m calling everyone I know. I’ll find the best doctor. I’ll double-check all of this. I’ll get in there and befriend all the doctors and nurses.”

It’s the opposite of being overwhelmed by scary information that you’d rather not know. I’m not like that. I’d like to know everything and take it on, so I don’t have to think about it anymore.

Building a Relationship With My Care Team

Being a great doctor is a lot like being a director in terms of how they coordinate and communicate.

As a director, I have to shape-shift all the time. Every actor needs to be spoken to differently. Some like to rehearse a lot while others like to improvise. Some actors like to be really serious while others like to joke. Some like a lot of attention while others want to be left alone, and they don’t tell you that. You have to intuit it. 

So if you’re on a shoot day and you have eight actors and each has a different way of working, one of the big parts of your job is to be able to bounce around and know how to deal with them all, while you’re doing a thousand other things.

It’s difficult. The best doctors work like directors, working seamlessly with people. It’s not a one-size-fits-all thing, and I guess if you feel like your doctor’s not doing that, you could say something.

I’m Living My Life

One of the great things that Dr. Mascarenhas said to me when we first met was, “Managing polycythemia vera is all about quality of life, but it’s your life, so get out there and live it. Don’t sit around and panic all the time.”

I feel very viscerally about that. Seeing my father progress through his illness might have had something to do with it — as well as having my own issues.

I feel very strongly that you only get a certain amount of time here. And even if your health is compromised, you’ve still got that finite amount of time. 

We can see it as straddling the line between the healthy and the sick. Every six weeks, I go to an infusion center that’s full of people getting treatments. Then I come back into this other world where health isn’t a concern and everyone’s focusing on making money and having families instead. 

It makes you live with more gusto. You never know when things could worsen. I could learn that my PV is progressing, that it’s getting worse, that I need a bone marrow transplant, or something like that. 

And so, for as long as I’ve got this body and this energy, I want to throw myself into the world, because it’s so clear that things won’t last forever.

Weirdly, I feel this is the blessing of having a disease like this. It makes it obvious that your life is not forever — which can be all too easy to ignore when you’re healthy, and then you can just take things for granted.

I had to learn to manage my anxiety in my mind and body. The gym, meditation, therapy, acupuncture, and attending long silent retreats are all helpful. Those are a whole scaffolding of things that help manage fear.

The premise of the videos was that Dr. Mascarenhas and my care team are fighting for my quality of life. And so the videos would involve Dr. Mascarenhas going on a date with me, basically, for a crazy day in New York, and actually see the life he’s saving. He wouldn’t know what I had planned for that day — a trapeze class, or diving, or driving a convertible, or taking a tango lesson. I see him at his job when I consult him — and this would allow him to experience my life firsthand.

Dr. Mascarenhas was quite eager to do it. Getting to have that time with him was pretty important for our relationship, and was certainly unique. Of course, a lot of patients wouldn’t be able to do anything like that with their doctors, but our banter is really quite evident in the video. 

I’m hoping the video can serve as a model for other patients and doctors, too.

And so that would be my advice: to see PV or another MPN as a gift — and to figure out that there’s a gift within every experience, even terrible ones. 

It’s your job to figure out precisely what that gift is. What’s that experience giving you? What’s it teaching you? How can you make something good from it?

Not to be a Pollyanna about it. To be honest, it’s not all roses. It doesn’t feel good to get phlebotomies all the time, to have to go to the doctor frequently, or to be unable to go on vacation for longer than a few weeks at a time because of my phlebotomy regimen. 

It’s a pain and it’s lonely. But it sets you apart and makes you unique. It gives you a unique access point to life.