"Having a Life vs. Always Being at the Doctor’s”

Transcript

Lizzie Warren: Michele Nadeem-Baker is a CLL patient. Ruth Fein is an MPN patient. Both are health journalists. In this episode of The Other Side of Cancer, Ruth and Michele talk about decisions across their cancer journeys. Clinical trials, finding super-specialists, and living a meaningful life when you have an entire world of doctor's appointments to deal with. This is the second part of a two-part conversation.

Ruth Fein: Michele, hi. It's such a pleasure to meet you finally. You and I have both been living with and reporting on rare cancers, and living in this parallel life, right? So it's so nice to meet you finally.

Michele Nadeem-Baker: Ruth, it is a pleasure to meet you as well. And it's so funny because I've watched your reports, and I've read your things. And we're both medical journalists, which is somewhat of a rarity, and being in the patient advocacy space as well, and also on reporting. We both report on our types of cancers and others, and on other types of health things. And I bet you, we have a lot more in common because right now, on paper, it's like we make a great match.

Ruth Fein: Yeah, exactly. So, one of the things that I'd like to bring up is the importance of seeing a specialist. And in our case, with a rare disease, a super-specialist. An oncologist is basically a generalist – they won't want to hear this – but an oncologist is a generalist with a concentration in cancer. We've become so specialized in all of our cancers because research has come so far, because there are clinical trials, because of new drugs, and what's in the pipeline has accelerated so quickly and so well; no one can be an expert in every cancer. So, particularly when it's a rare disorder, a rare cancer, the difference between seeing who I thought was a specialist, a hematology oncologist – I thought I was seeing a specialist – versus going to a major academic center and seeing an MPN specialist. It's day and night, and I'm sure that's the case for you as well.

Michele Nadeem-Baker: It is. So, as you had said, there are oncologists, and then there are hematology-oncologists –hematologist-oncologist – "Heme Oncs ," as we refer to them. And then, as you said, they each specialize in each area. And I do wish that everyone could go to an exact specialist, but there are a lot of people who live pretty far from those. But I always suggest, at least, getting a consultation, right? And now, there are the virtual appointments that have now been established, and hopefully, those will continue.

Ruth Fein: Yeah. You bring up a really good point. I think that's one of the really positive things that have come out of COVID. I have not met a super-specialist yet who is not willing to do a remote consult and someone who is not willing to work with a community physician. And so, exploring a specialist is not an expense of your time and your money the way it's associated. So we talk about it being not accessible to everyone and the equitable issues, which are very, very real, from a financial standpoint and in so many ways. But I like to remind people that a consult, by phone or by computer, is something that most specialists will do, and then you can still be managed in your community, which, I think is really important.

Which brings us to clinical trials. I know you were in a clinical trial when you started. I'm in a clinical trial now. And that's another – the reason I'm making the connection is, that's how we have access to the newest and greatest treatments through clinical trials.

And so, I'm very, very aware of how fortunate I am. I'm three and a half hours from New York, so it's not easy. I go every three to six weeks. It's not easy to get there. It's expensive, time-consuming, and all that stuff. But I can do it, and I'm very aware of how many people can't do it, because they aren't close enough to an academic center, or they can't give up their job for the day, or they don't have childcare – for so many reasons. Or they're not comfortable with the idea, for all kinds of cultural reasons, of participating in a clinical trial.

So, how did that come about, especially for a new treatment for you? We think of clinical trials as a last resort, which is the other thing I'd like to change. You and I are good examples of-

Michele Nadeem-Baker: Exactly.

Ruth Fein: -it's not always a last resort.

Michele Nadeem-Baker: With clinical trials, unless I absolutely had to go into phase I, I wouldn't, so I was careful about my caveats. I really would have wanted to go on a clinical trial, because when I was going on treatment for one thing, as I said, there was so much in the pipeline, but the standard care was what was still being used, which would've been some old-fashioned chemos that are combined. But also, I knew that clinical trials are really – they can be tomorrow's treatment that you're getting today, instead of waiting years and years for trials to go through all their hoops that they have to jump through and all the phases.

So, for those listening, there are three phases to a clinical trial. And then if they make it through each phase, and the results seem like they would pass the rigors of the FDA approval process, they are then sent there, after they're compiled, reviewed, and then presented. And they don't all make it. I mean pharma does spend a lot of money and time on these trials. A lot of times, they spend – they charge us a lot of money as well for those drugs. But everything has to go through trials. So those of you on a trial, who are listening, thank you so much because that's helping us all. And I did want to help, but I also knew it could be tomorrow's treatment today. And I didn't know enough, at the time, as I know now, but "Educate Yourself" is one of the best things.

But I was on a combination trial. I didn't realize there were these nuances. And it was a drug that had been approved for relapsed patients, but not for frontline, which I was. And it was the drug that had been the standard of care, which was a combination of two chemotherapies and a monoclonal antibody. I know it sounds like I'm speaking another language.

So it was FCR, which had been the standard of care, along with the very first drug of its class, a BTK inhibitor, which was ibrutinib, otherwise known as Imbruvica. But it was full strength for both. I didn't even think about that because I didn't know enough to ask about that. And you know what? It worked for me. I never reached full remission, but I got extremely close, and it managed my disease for almost four years, and then some, because I was treatment-free. But I was never thrown into, what we call in some of our blood cancers, undetectable minimal residual disease, which is somewhat akin to complete remission. Somewhat. And that it's undetectable, but the disease is still there.

Ruth Fein: Yeah. I think what you said – well, I'm currently in a clinical trial.

Michele Nadeem-Baker: Right.

Ruth Fein: And they call me the "poster child" for this clinical trial because I'm doing so well. I'm three years in, and my symptoms are almost undetectable most days, and for me, the measurement is fibrosis. So I have myelofibrosis. I have fibrosis, which is scarring in my bone marrow, and that gets in the way of the production and survival of healthy blood cells: red cells, white cells, and platelets. And the fibrosis in my bone marrow has reduced from a II intermediate score, which is really an evaluation of risk factors. It's gone from a II to a I, to a 0. And that doesn't mean I don't have myelofibrosis anymore, but it means that my disease has changed molecularly, and they don't know what that means yet.

There's definitely a correlation to symptoms, but there's no correlation – I mean to the drug, not to the fibrosis. They're learning more and more about the correlation to longer-term survival or healthier survival, but they're not there yet. So in the lab, it's really tough to get somebody to say that there's a direct correlation, but when you watch your disease – less and less measurable, it's hard not to think you're getting better. And I'm never going to get better, but my symptoms are better, and perhaps I won't progress to the next stage which is acute myeloid leukemia.

But anyway. Clinical trials, we've both been on. I think the most important thing that you said is to ask questions. When you sign up for a clinical trial, you have a pile of paper that you have to read and sign, to give permission, and to understand all kinds of things about the drug, and potential complications.

You also have a bill of rights. There is an actual document that describes your rights as a participating patient. And people don't realize that they have that document, and/or they don't remember because you sign up, sometimes, very quickly, or you don't have a lot of other alternatives. But what you do have is the right to stop that trial at any time, and I think that's really important. People think "I've signed up for a two-year trial. I had better be really committed." Well, yes, you better be committed to trying it, but you can stop at any time, and I think that's really important.

So, explore clinical trials. They are the next – they are tomorrow's answers. But ask questions and know what you're getting into. And it's not experimental. By the time a trial gets to a patient, it's not experimental. It's been tested for safety. It's been tested for dosage. It's being tested for effectiveness, which is different.

Michele Nadeem-Baker: And also, the other thing is to ask, what are my treatment options?

Ruth Fein: Yes.

Michele Nadeem-Baker: But you brought up a very good point about the Bill of Rights. But also, a lot of people think they're guinea pigs, and that they may get a placebo and not treatment when they need it. But the other thing is, you will get a treatment. On our types of trials, you would not be given a sugar pill when your disease is raging. So that's another myth buster I'd like to get out there.

Ruth Fein: Right.

Michele Nadeem-Baker: Because a lot of people do think that. And also, if you're not doing well, generally speaking, when you speak up for yourself – but your doctor would also, I would hope, suggest that perhaps, another course of treatment would be better for you.

Ruth Fein: Yeah. And to what you said. Typically, you would be tested against what is the current standard of care. Nothing less. So you might be given what people think of as a placebo – it isn't a placebo as in a sugar pill – it would be the standard of care for what part, for some people in the group, versus other people who are getting a newer drug, or in combination, in my case.

So let me ask you this. What's something – and again, we're both strong women. We're both – we've been professional our whole lives. We made choices that would appear as strong, independent women. What's the one thing that surprised you the most about how this disease has affected your life?

Michele Nadeem-Baker: That's a really tough question. That's a great question. And the thing that surprised me is that I have met some of the most wonderful people. Patients who have blood cancers, both CLL and other blood cancers, like in meeting with you, Ruth. But I have just met some fabulous people out there. And I would never have thought my life could be as enriched as it is by all of these different people from different places in the world. And we're all together having these different blood cancers, and that is such a gift. It really is.

And the other thing that surprised me is, I had always wanted to go back to broadcast journalism. In the back of my mind, I kept thinking "Someday, someday." I never thought it would take something like cancer to bring me back to doing – to reporting. And that was also wonderful, and a nice gift as well that I allowed myself to do. And pursued it and am pursuing it. But meeting the people I have.

And now, also, I'll tell – oh, and I didn't even think. If anyone had told me I would know this much about blood cancers, about the health system and clinical trials 12 years ago, 11 years ago, I would be like, "I don't think that's me." How about you? What are some of the surprises that you've had?

Ruth Fein: It is a tough question. It is a tough question. I am most surprised by the fact that I did finally tell my story publicly, and I did that in The New York Times. It wasn't a quiet coming out. That was the first time I ever wrote first-person, and that was a story in The New York Times. And I did that because it doesn't matter what the disease is. A rare disease, even in today's world, with so much electronic information, digital information, et cetera, there are so many people who don't have good information about what they have. They don't know how to share it with their family and friends. It's very difficult to explain your cancer, or my cancer, whatever the cancer is. It's very difficult to explain. Just like it's difficult to explain that I can't hike with you next Sunday. I can't ride my bike with you, even though I'm still cycling. If I go with you, I can't go 30 miles at 10 miles an hour, or whatever it is.

So, by telling my story, it really surprised me that I was willing to. But it has, like you, given me such satisfaction to share. Not to share my story for the sake of people understanding me, but to give people another tool, and in some cases, one of their only tools. To be able to explain to someone else what's going on in their life, and to have the ability to help them explain it, and why they are who they are, what they're experiencing, and why they make some of the decisions they make.

I think that for me, telling my story was a big surprise. And like you, now my career has gotten narrower and narrower. I was a health and science writer for years, initially within a not-for-profit, but mostly writing in media relations, crisis communications, and all those things, but an awful lot of writing. And now, most of my world is writing about rare blood cancers, which is a very unexpected thing and a very satisfying thing to be doing.

Michele Nadeem-Baker: Ruth, human mortality is one of the only things we can count on – oh, and taxes too, right? So none of us is immortal, and people have been recently talking about end-of-life planning. But I'd like to think of it more that, this is something I would be doing anyway, and it is. And I don't want people to think, because I'm doing it, it means that I think I'm going anytime soon, but I have put it off and put it off. It's one of the things that I should be planning for. But what about you? Have you done this, or is there a particular event that perhaps led to your doing it?

Ruth Fein: It's a funny story. I've been a firm believer for years in, as you say, quote, end-of-life planning, being prepared, and talking to my family about my wishes. I've been an organ donor since I ran communications for the National Kidney Foundation years ago. And I, in fact, have made an anatomical gift to a local hospital. When I'm gone, they can use my body however they'd like, because I figure, it's unique at this point. So if I can help medical students, that's a good thing. So I've gone there.

However, with that said, when I was at this conference I spoke about earlier, one of the sessions was on dealing with your mortality and preparing for your mortality. And it was one of the few times there was a choice between roundtable discussions. And I walked the other way, and I kidded around with the woman at the door, saying, "I would do anything to avoid going in there." And she said, "Well, I guess that means you should, right?"

And I thought about that for a minute, and I thought, "Wow. Am I in denial or what?" And again, it's not about "Do I think I'm going to be gone now?" At one point, when I asked my doctor what she thought; when I had walked into her office three years earlier, if I had asked her how long I had to live – which I didn't, and she didn't offer – but what would she have said? And she didn't want to answer me. And because I'm doing so well, she's like "Are you sure you want to know?" And I said, "Yes. I really want to know."

So she went on her screen, looked at all my tests at the time, all her comments at the time, the rating scale of symptoms, and bone marrow fibrosis, et cetera. And she said again "Are you sure you want to know?" and I said, "Yes. I really do." I understand they're old, based on old studies, right? In this case, the prognosis is based on old studies, and also based on the older studies had much sicker people in it, because other people weren't diagnosed so early, right? So she looked at me and said – and I was expecting three to five years. She looked at me and she said, "Eighteen months." Now, that was only three years ago, right? So was I going to be gone in 18 months? I'm sure not, but that's what the statistics said. Should I have run home and done my end-of-life planning? Probably, but I didn't.

And so the point is, I like the idea, to share with people, as you just did, that none of us is immortal. It's not about end-of-life planning. It's about preparing ourselves, just like we do financial planning. Preparing ourselves, and talking to our family about what we think we'd like to happen in those last hours, weeks, months, or even years?

And when I went to this session at this conference, we filled out forms that were amazing questions that no one ever thinks about. Okay, for instance, do you want to be, if you're at the end of life – and again, whether that's months or weeks, do you want to be so drugged up that you don't feel any pain? Or do you want just enough drugs, to take the edge off your pain, so you can spend that time – again, whether it's hours, days, weeks, or months, with your loved ones and friends? Do you want a party? Do you want music in the room, balloons, and celebrating your life? So many people never have that opportunity, and then they're gone, and their family has a celebration of life.

But the person who spent the last year, two years, three years, or two months dying – or living until they died – never had that opportunity because no one wanted to talk about it. Do you want a clergyperson in the room? Do you want to be at home, in a hospital, or in hospice? Or there's palliative care that is somewhere in between. So there are all these things that are really important to talk about, not at the end, because then you might not be able to talk about them.

Michele Nadeem-Baker: Exactly.

Ruth Fein: Let's talk about them now, when we're healthy, or healthy in perspective healthy, and make it a normal part of our culture, instead of something nobody wants to talk about.

Michele Nadeem-Baker: Those are all wonderful questions, really, when they're stated like that. And that celebration of life, that's so true, really. You should be celebrating. We should be celebrating life while we have it, and we should also think about these things when we can think about them with a calm, clear head.

Ruth Fein: Exactly. And when we're not – right. When we're not in pain, when we're not on drugs, when we're not worried about who we're leaving behind, all those things, yeah.

Michele Nadeem-Baker: So, have you done your planning now?

Ruth Fein: I filled out those forms that asked all those difficult questions. And I didn't completely fill out the forms, but I did a lot. And it got me to think about a lot of things that I haven't necessarily answered yet, but just the process of thinking about it is a really good start.

Michele Nadeem-Baker: Sure. I've been thinking about it, talking about it, but I have not actually done it. Gone through all the legalities of doing this. And that's something that I am continuing to put off, and now, it needs to be actually scheduled. I've asked around for some lawyers. And I know the forms, the ones that are needed, discuss things like you were saying, and now, I have more to add to it, thanks to what you just shared. But we still have not done it. I have a will, but it's from 2001, and that's a bit old. A lot has changed.

Ruth Fein: I don't know about you. But for me, I have managed to, very creatively, avoid all kinds of really important health procedures and tests – tests and regular checkups – because I prioritized. And here I am with something life-altering, or life-threatening, right? So here I am with something life-threatening.

I had early colon cancer; I haven't had a colonoscopy in five years. I'm supposed to have one every year. I finally just made an appointment. I haven't had a breast checkup in a number of years. My teeth are in terrible shape. Do you know why? Because I didn't think that I would be around long enough to make a difference. And so, I prioritized what was really important. So now, I'm at a point where I feel great, most days, and I now have to play catch-up.

But the point I wanted to make is; we see these super-specialists. It's just as important to do what I didn't do, which is to keep up with all of the routine exams that you get from seeing your general practitioner. And I think that I'm probably not the only one that lets that slip.

Michele Nadeem-Baker: I have to say, I do keep up with everything, except I am late on my colonoscopy by a few years. And part of that is, I was scheduled to get one the day I was told I had to go back on treatment immediately and needed a blood transfusion.

Ruth Fein: Yeah.

Michele Nadeem-Baker: And then I wasn't allowed to go off of treatment because I'd have to, for a while, because of the bleeding, but that is hanging over my head.

There are a few other things too, that I have put off, like you were saying. But not – I mean I've been very good about dental care, thank goodness. I can't even imagine what the bills will be for you if needed. And also, about breast health and mammograms. And I actually have had a couple of scares with all that, so I'm glad that I have kept up with it. It is so important that we do that. But it's just – don't you feel like your whole life is like, you're an old lady before your time, and that it's like doctor appointment after doctor appointment, and having to schedule these things, and trying to work. Still trying to be – having a life versus always being at the doctor's.

Ruth Fein: Exactly. Yeah, exactly. It's overwhelming, it's very difficult, and we both appreciate how difficult it is. But it's just so important. It's so important to keep up with the other things, that otherwise, I mean, the reason we keep thriving is because we want to live. And the reason we keep looking at what's down the pipeline, a clinical trial, whatever new drug is available tomorrow or down the road, we're doing all these things to make ourselves better. If not a cure, certainly to reduce symptoms – if not a cure – or remission. But what's the point if we're not whole? We still have to be whole healthy.

And it's sort of the same as traveling and some of the other things. I think that in some ways, a cancer diagnosis is a gift, and I know this is not a unique thought. But it, immediately – any chronic condition – the positive side to a cancer diagnosis or any chronic illness is that you begin to deal with your own mortality. And that's not a negative thing as in the dying process or preparing for death. It's the positive that's important, as we just discussed. But it's also the important part of that. Don't waste a moment. Do everything you are capable of doing. Do it with a smile on your face. Make sure you make the most of every minute and every day, and don't take it for granted. Anyone can get hit by a truck tomorrow, but we know that we might get hit by that truck sooner.

Michele Nadeem-Baker: That's a wonderful way for us to wrap up this podcast. And that we do really need to live in the present, and not worry about everything, because this is what we have. We have today. Yesterday's a memory, and tomorrow is a hope. But today is all that we know that we have, and that is something I've learned. Now, some days, I wish I felt better, in order to enjoy my days more, but I know there will be more days.

So this has just been – it's been really grand being able to co-host this with you, Ruth, and I hope that we get to do a lot more together. And to stay in touch because this has been a great first date, a first blind date.

Ruth Fein: It has. A great first date. A long one. And thanks so much for agreeing to have this conversation. I know we both know each other only on the screen, two inches by two inches, but today was great. Thank you.