It’s a wake-up call for you to adjust your life. You should take advantage of that because you can get too focused on all the things going on inside your body. 

Jeremy Smith

Jeremy: It’s a pleasure. Thanks for inviting me on. It’s been quite a journey for me over the years. I’ve always known who you are but didn’t get a chance to really talk to you until recently, so it’s been a welcome pleasure.

Andrew, TPS: Thank you for sharing some time with us. As you said, it’s been a long journey. Jeremy, you’ve been living with an MPN, starting with PV (polycythemia vera), for 33 years. You were part of one of the original, I would say, internet patient communication pioneers, where patients started talking to patients. 

As you’ve told me, these other founders of this early listserv — actually, even before we had more sophisticated tools on the Internet — they passed away. Thank God you have not. 

I think it’s important for all of us to keep talking and learning and sharing what we know between each other, because I think it builds strength and knowledge. As rare a disease as an MPN is, it’s a very tight community, and I think that’s related to the social media connections and the ability to converse with each other. 

As you start to talk to people, they do feel lonely at times. It brings people together. It’s a real learning experience for everybody, no matter how knowledgeable or what level you’re at. There’s always a big difference between the person who just got diagnosed and someone who’s been on a 10-year-plus journey.

I would say, because of the average age of MPM patients … when you [tell] them, “We use Zoom,” they’re like, “What’s that?” Some only have 25 megabyte internet broadband. They’re not as technology-savvy as some other groups. 

I’ve enjoyed the conversation and getting to know other patients more in depth than I would otherwise. If I can help them in any way understand things [or] find different doctors, then it’s rewarding to me. I feel like we have an obligation as educated patients to pass on things that we’ve learned to other patients to help them find the answers to their questions.

Jeremy: When I was first diagnosed, I had never heard of the disease. I was scared. As I started doing research, I found at the time — this was 1989 — there wasn’t a lot of access to information specifically on exercise and diet for MPN patients at all on the web. 

There weren’t any studies. There was no fatigue study that was done later with Dr. Mesa. What I started doing was going to other cancer forums and finding out what these cancer patients were doing with really bad cancers that was different than what we were doing as MPN patients. The constant theme that came through from everything I read was diet and exercise. 

At the time when I had polycythemia, I said, “I got this thick blood. What can I do to help my body recover and fight this disease?” I came up with a whole business plan that I wrote [of] these things I was going to do. For diet, the first thing I started doing was consuming large quantities of garlic because it has properties to thin the blood. 

One of the things I didn’t know until I spoke to my doctor is that he asked me to always let him know when we did CBCs if I had exercised before or a day before. In many cases, exercise increases your white cell counts. 

It’s important to know that because my white cells might bump up, and that’s either a sign of an infection or something else. There were a couple of times where my white cells went way up, and it was because I had been on a 100-mile bike ride the day before. 

I combined all of those things, and all of a sudden, the fatigue was gone. I was just feeling better. I will say, one of the things that I’m most proud about is that I’ve never missed a day of work in 34 years because of my MPN. 

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The way they look at data is very different than the way I do or you do. For them, they’re more suspicious of what they don’t know. I did learn along the way that the younger doctors seem to be more behind the exercise, although I have to give Dr. Silver credit. He was a runner himself, so he was always behind that. 

Andrew, TPS: And he’s in his 90s, right?

Jeremy: Yeah. A few of the other doctors were kind of, “Well, if you can do it and it helps, that’s awesome. Now, let’s move on.”

Another lesson I learned along the way is that it may not be your disease that kills you. It may be something else because of the stress on the body and how the diseases morph. I’ve had cardiovascular issues and things like that. 

The head of cardiology [at the Mayo Clinic] recommended the Mediterranean diet, and that’s pretty much where I am today. It’s a diet anybody can be on and get great benefits out of it. It’s not one of those diets where you have to just eat beans. It has a very good balance, and it gives you flexibility. 

I still eat a Kit-Kat bar. There’s certain things I’m not willing to eliminate. The diet to me that I would go on if I was an MPN patient — and, again, always check with your doctor — is more the Mediterranean diet or some variation of that.

Jeremy: There was a seminar back in May up at the Hutch (Fred Hutchinson Cancer Center) with a bunch of doctors that Dr. Scott led, and Dr. Mesa was there. There was an interesting doctor from Arizona who is focused on nutrition. We’re really starting to see things change. I think 10 years from now, nutrition and exercise will be a major part of MPN patient treatment.

At this seminar, she was talking about the importance of diet and exercise. I used to go to ASH (American Society of Hematology) every once in a while, and early on, there wasn’t any real discussion of diet and exercise. Every once in a while, someone would talk about it for 15 minutes. 

It’s really starting to change now. I think doctors realize now that it has to be a comprehensive treatment and that food does heal the human body. The right foods, as you said earlier, are critical to reducing inflammation. 

Jeremy: I also think — and we don’t talk about this enough — mental health awareness and treatment is very important. I saw a big shift in my attitude when I went to a therapist. I had a person that I could actually talk to about how I felt about possibly dying or my life being impacted. 

I think everybody needs to have that option and consider it. I was driving my doctors nuts at one point because it was very hard to tell when I’d get sick, was it related to my polycythemia vera at the time, or was it related to something else? 

I needed to calm down, and so my therapist got me to start meditating. Although, I have to say, Dr. Schrier was big on meditation. Those things are really helpful. It’s not just about diet and exercise; it’s about healing the body overall. 

I always say that an MPN is both a curse and a blessing. The blessing part is that it reminds you how short life can be. It doesn’t mean that you won’t live for 30 or 40 years with the disease, which is a huge advancement compared to 20 or 30 years ago. 

At the same time, it’s a wake-up call for you to adjust your life. You should take advantage of that because you can get too focused on all the things going on inside your body. 

The doctor appointments, I would say, in my mind are the most draining [because of] all the time of having to see the doctors. I kind of created my own mess by having 3 hematologists. I’m to blame for part of the problem. 

30-some-odd years. You’re doing your podcasting now, but certainly there’s an uncertainty both with the MPN, and then you have this other condition like I do, CLL. How do you think of tomorrow, next week, next month, next year?

Jeremy: I do sometimes. I don’t know that it’s that productive. One of the things Dr. Schrier had me do was set up goals and write them down. I was going through a divorce at the same time I was diagnosed, and I won custody. My kids were 5, 3 and 1.5. My first goal was to see them graduate high school. 

Then as we passed these goals, Dr. Schrier would have me reset them. Then we kept developing them. My goal of today is to make it to 70. My number-one goal is to have the best quality of life that I can have for whatever time remaining that I have. 

I don’t know — other than a stem cell transplant, which sometimes works, sometimes don’t work — whether there’ll be a cure, but I think there’ll be drugs that will allow us to live even with myelofibrosis, at some point over the next 5 to 10 years, that will allow us to live like you have PV or something for a 30- or 40-year lifespan. 

I believe interferon is an important drug that can allow you to at least slow the progression of the disease down. Anything you can do that means there’s more time for you and your life, hopefully. None of us know what’s going to happen in the future. That’s a hard challenge. 

COVID scared the crap out of me, and I’ve made it through that, knock on wood, thanks to Evusheld. Life’s a crapshoot no matter what, whether you have a disease or you don’t. Anything can happen at any time. 

I think it is important to have a positive attitude going into this. The more negative you are, I definitely believe that there is some karma out there that can make things worse if you go all dark.

As you said, there are all these things we can do with our doctors and our diet or exercise, but there’s also great strength in community. I know you foster that, and I’ve tried to foster that, too. So thank you. I just want to thank you on behalf of the community, Jeremy Smith. Thanks for doing that and for being with us today.

Jeremy: Thank you. It’s been a real pleasure. I appreciate you bringing me on.

Andrew, TPS: Andrew Schorr in San Diego, Jeremy near Portland. Both of us [have] myelofibrosis, are living with MPNs, and are devoted to the community so we can all do better.

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