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Emotional Roller Coaster: Living With Lung Cancer

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Published on September 25, 2019

How do patients deal with the uncertainty, fear and anxiety on the roller coaster that is lung cancer today? Stage IV lung cancer survivors Laura Levaas and Marisa Wittebort share what they’ve learned since diagnosis and how they keep a positive mindset through all of the challenging highs and lows. Tune in to learn about ways to cope with changes cancer can bring.

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I'm from The Netherlands, Europe. First of all thanks so much for your fantastic website and work, I just discovered it and it is great! Really amazing and so very helpful as we do not have a similar thing over here, so thank you very, very much!

— Marieke, lung cancer care partner for her mother

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

And so that's what we're talking about in our program.  Joining me as a co-host is Patient Power's lung cancer community manager joining us from Denver.  That's Laura Levaas, who is a stage IV lung cancer patient herself.  Hi, Laura.  

But, Laura, just a little bit of background about you.  You've had your ups and downs as a stage IV lung cancer patient, ALK positive.  So just remind us, you've been diagnosed how long ago?  

So the photo you have of me I think maybe is when I'm in the rehab facility, and I was there for a couple of weeks, just kind of learning to function again.  And I would say that was probably one of the lowest spots because at that point they weren't sure—doctors weren't sure how long I was going to live. Originally, they thought maybe it was a couple of months, but luckily I was a super responder to the type of medication that I'm taking, it's a targeted therapy, and here I am two years later just doing awesome.  

But, just as this is a roller coaster, there's no way, you know, you can't predict the future, so you really have to stay positive even through the tough periods because you're just as likely to make a comeback.  

Andrew Schorr:

Well, thank goodness. Now, I see you on Facebook, and so not that long after we wondered would you get out of the hospital and you couldn't be on that program, you were on a trip with your boyfriend Nick, right? Where did you go and tell us about life now, right now.  

Marisa Wittebort:

Well, I met my boyfriend, Nick, in England actually.  I was diagnosed in London in 2015, and I met him while I was there, so good things and bad things happened in London.  So now doing the long distance I often travel to see him.  And I was very fortunate to be feeling really well this year, so I finally got the courage to go back abroad, so we travelled through England, visited his family, took some couples time.  It was really nice.  

Andrew Schorr:

Wow.  Wow.  Well, it's great to have that loving relationship when sometime you feel so sad, I'm sure when you're really down.  So that's been good.  

Marisa Wittebort:

Yeah, I can't imagine not having the comfort of a partner.  

Andrew Schorr:

Right.  Right.  Well, Laura's working on it.  Laura's going do the series on dating and cancer, and she has a good support structure, but we're talking about those relationships for sure.  So, Laura, maybe you have some questions for Marisa, the kind of things she does to keep herself going.  Go ahead.  

Laura Levaas:

Well, Marisa, I think I would like to ask, first, what is the difference between sort of your mind set when you were first diagnosed versus now?  Because I know that my needs when I first got diagnosed and the way I dealt with things are different than the way that I deal with them now, now that time has passed.  

Marisa Wittebort:

Absolutely.  I mean, and this is one of the things that my diagnosis has taught me generally, which is to put myself first, you know, not to be afraid to ask the important questions that might expedite something or might give clarity which then gives you peace of mind.  So it's really about speaking your mind, not worrying what other people and putting yourself above everything else.  I really think that helps one deal with the day-to-day living with cancer.  

Andrew Schorr:

Laura, you're living with it. What do you say?  

Laura Levaas:

Oh, the difference in needs? 

Andrew Schorr:

Yeah, and how it's changed over time.  

Laura Levaas:

Yeah, in the beginning I just felt like I needed support from everywhere because I had some physical limitations, so I—you know, my mother was living with me at the time, and like I couldn't even shower or dress myself or like tie buttons, or—like I needed a lot of help, and that was hard for me being an independent grown woman.  

 So once I was able to be like physically mobile again, I don't need help with that stuff anymore, but I do have a really good group of friends that I reach out to when I need support or when I need to get social.  Like that's really important.  And I think the biggest thing for me is trying to live life like I don't have cancer. Sometimes I don't even think about it except when I'm taking my medicine.  

Andrew Schorr:

Yeah.  Yeah.  I'm living with two blood cancers, and, right, I try to put that way, way in the background.  So, Marisa and Laura, you're both very well connected with communities of people, and you all know there have been people who you've lost, people you were connected with.  So there's an uncertainty for any of us.  

So, Marisa, how do you deal with the uncertainty, like when you go in the hospital, if it happens again, you don't know if you're getting out.  If you have a brain scan, you don't know if it's going to be a positive result or a less positive result.  How do you live with that?  

Marisa Wittebort:

Well, it's definitely a challenge, but it's one that I think I'm getting better at, which is to know that there's always another option.  Science is moving so quickly now and I think we're on the cutting edge of a lot of developments, so I think it's important to keep your confidence in the movement of science and just still enjoy the times even when you're in the hospital.  You know, my family comes with games, we laugh we watch TV on the computer.  Even when I'm going through a painful surgery or procedure we try to make light of it.  

Andrew Schorr:

Wow.  I have to just—go ahead, Laura.  

Laura Levaas:

I always get vegan donuts when I'm in the hospital from my friend Sherry.  So that's one thing to look forward to.  

Andrew Schorr:

I just want to pass something on to our lung cancer audience and others who may be watching.  My wife, Esther, co-founder of Patient Power group did an interview with a wonderful lymphoma patient, fellow who is actually a comedian now from New Zealand, and when he's been in the hospital he and his wife portray it like he's going on vacation, and like he's going to Fiji or Hawaii, and they decorate the room like that, and I think everybody like dresses up like they're in Hawaii or Fiji, and they eat those kind of foods. And I'm not saying when you're so sick it's that easy to do, but Laura, what about you?

I mean, what about the anxiety of when you go for a scan and you did like a couple of weeks ago, right, and you had a dosage change in your medicine and what's the results going to be? 

Laura Levaas:

Sure.  Well, I did have those brain mets that came back, and we were all shocked because in February of this year they were gone, miraculously, and then all of a sudden they came back.  So they decided to increase my medication and I had some really bad side effects from that.  So—and at that point we didn't know, is it from the brain mets or is it from the medication.  Thankfully it was from the medication, and I got used to it, and I'm feeling good again, but that was a really scary time.  

But the great thing is I reached out to my friends and they were all there right away.  So I just have a really great support network. Whenever I need help they're there for me, so that's really comforting.  

Andrew Schorr:

Yeah, I think the support structure.  So, Marisa, you have Nick, although he's across the ocean, but I'm sure you correspond with him a lot.  And you have your sister, who has been a wonderful support to you moving—she has moved, I guess, back to the US now from London.  So do you share with him how you're feeling sometimes when you're down? Or how do you—what do you do.  Do you say how you're feeling?  

Marisa Wittebort:

Even if I didn't share he would know because we're so tuned into each other now, you know, going through the disease and ups and downs.  He really knows when I'm not well, even if it's an emotional, emotional day for me.  So I do, I share everything with him.  You know, we've spoken about everything from prospering in light of the diagnosis to the possibility of death, which is—everyone faces death, right, but it's something that we have to look straight in the eye on a daily basis.  So I'm just open with him about that, and I think if anything it's made our bond even stronger.  

Andrew Schorr:

And so, Laura, how do you look to the future?  How do you see the future?  You've got a little boy.  You have medicine that's working, dosages that have been changed.  I think Marisa referred to this about research going on with the hope of if this medicine poops out on you there'll be another and maybe another.  So how do you see the future while you have this uncertainty every time you go to the doctor?  

Laura Levaas:

Right.  You know, I just try to keep living my life like I was living it before.  And of course you prepare for the worst.  You get your affairs in order, which, you know, I've done that a couple of times, and aside from that you keep living, and you have things that are exciting to you. You have good days and you have bad days, and I think for me it's just knowing I've gotten through the bad days before and I don't see it ever being as bad as it was when I was first diagnosed because I was so close to dying.  But to me these setbacks feel like small potatoes.  So I think it really is just kind of an attitude thing.  

Andrew Schorr:

Wow.  

Laura Levaas: 

I've been an accused of being unrealistically optimistic, and I'm like, well, if that's a bad thing, then I'm it.  

Andrew Schorr:

What about you, Marisa? You have a beautiful smile, you went on this trip.  You were with Nick.  I see you on Facebook.  You're going here, you're going there.  You're living.  Has anybody ever, almost like what Laura was saying, shaking their head, how can you do all that and you're a stage IV lung cancer patient?  

Marisa Wittebort:

No one has ever asked me directly, about it, but I did get a lot of, hmms.  Upon diagnosis I had just moved to London to study my masters in legal and political theory, and I had only taken one class before I then had to go to the emergency room and got my diagnosis.  But I started to feel better straight after starting treatment, so I ended up going back to London and finishing my masters, and I split my treatment between two countries.  

And so a lot of people thought I was nuts for doing that.  You know, why would you care about your education.  But it really is about keeping your mind in the game and living your best life.  I'm doing more now than I think I probably would have been without stage IV diagnosis because I value each day that I'm alive.  

Andrew Schorr:

Right.  Well, it shows.  I know you're a yoga instructor.  

Marisa Wittebort:

Yes.  

Andrew Schorr:

That sort of mindfulness helps you too, right?  I mean literally in the moment.  

Marisa Wittebort:

Absolutely.  I've been practicing yoga for a long time, even before my diagnosis, but it wasn't until earlier this year that I decided, you know, this is something that's really helping me psychologically.  It's not just a physical practice, and so I did the training.  And it was also helpful to be around a community that is cognizant of their spiritual and emotional state.  So they don't have to be sick like me, but they still understand being your best self and striving for improvements on a daily basis.  

Andrew Schorr:

So for people watching, a lung cancer audience, maybe people with other serious diagnoses and with uncertainty riding over it, hope for a cure, hope for a better medicines if one that you're taking is not working out for you, better medical procedures, radiation procedures, surgical procedures, whatever, Marisa, what would you say to them that you've learned that you think might help them if they're feeling down now? 

Marisa Wittebort:

Well, I think there would be two things.  On a practical level, seek out other people that are in your position.  So I interact with the ROS1ders, which is the ROS1 group on Facebook, so have a team that understands what you're going through.  

And then the other thing I would say is that, again, you can't predict the future, and when I was diagnosed there wasn't even one medication approved for ROS1.  Now there's several and one in clinical trials, so things are moving, I can promise you.  

Andrew Schorr:

Okay.  Laura, what about you?  What would you say to our audience that might help propel other people?  

Laura Levaas:

Yeah, I would echo what Marisa said about connecting with people that have a similar diagnosis.  

Andrew Schorr:

You're ALKies, the ALKies. 

Laura Levaas:

Yeah.  There are several ALK-based groups for people that are ALK positive, and you can get so much information from people who are on the drug. There's always questions about side effects and different things like that.  

The other thing I would say is, you know, connect with—stay connected, whatever that means for you, and try to have fun and try to rediscover your sense of humor.  Or if you never had one, find it because laughter is really important.  

Andrew Schorr:

Take a stand-up comedy class or something like that.  Absolutely. Well, I'll tell you what.  It's just a delight to talk to both of you, and Laura and I will do a lot of more lung cancer programs, and we welcome suggestions from our audience of what would be helpful for you.  

And, look, we're not making light of any of this.  This is serious business.  But you can wallow in it, and I think you've seen the pictures, each of these ladies have had some pretty serious times when they did not know whether they would get out of the hospital or what the next scan was going to say, but here they are, right?  Marisa, let's see that beautiful smile again.  

I love it.  I love it.  Well, give our best to your sister who is a wonderful support to you.  Have fun with your dog Floxie.  

Marisa Wittebort:

Yeah, she was barking in the background.  

Andrew Schorr:

Yeah, keep teaching yoga and living in the moment, and have a wonderful life with Nick.  

Marisa Wittebort:

Thank you.  

Andrew Schorr:

That's our wish four. And, Laura, you and I'll keep trying to do what we can do to help the lung cancer community.  

Laura Levaas:

Absolutely.  

Andrew Schorr:

And all the best to you, Laura Levaas.  So Marisa in Louisville and Laura in Denver, and examples of people, yes, they're living with stage IV lung cancer, but they are living.  

I'm Andrew Schorr in Carlsbad, California, and as we like to say, knowledge and community can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.