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Funding the Future of Lung Cancer Research

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Published on January 7, 2020

Key Takeaways

Former Major League Baseball player Stephen Huff shares his journey with lung cancer after being diagnosed at 29 years old in 2018. Since then, Stephen founded The Huff Project, which has raised thousands of dollars for lung cancer research.

During this interview, Stephen discusses his decision to start a family as a lung cancer patient and why support, especially for male patients, is important. Watch now to hear his story as both a patient and advocate on a hopeful lung cancer journey.

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We love your wonderful videos and coverage of lung cancer meetings! It is great that updates from conferences can be shared further for those unable to attend. Thank you for all you do to ensure that a high level of information can be provided online.

— Jo from Changing Lung Cancer

Transcript | Funding the Future of Lung Cancer Research

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.

Laura Levaas:

Hi, everybody.  It's Laura Levaas from Patient Power.  You may or may not know that I'm the Lung Cancer Community Manager, and I also have lung cancer. 

Today I am joined by Stephen Huff, who is an amazing human being.  He also has lung cancer, and he was diagnosed at age 29 in 2018.  Stephen and I both have the same type of lung cancer.  I've invited him here today to tell me a little bit more about his story and the things he's accomplishing.  Thanks for joining us, Stephen.  Hi. 

Stephen Huff:

Hi, Laura.  Thank you so much for having me.  This is a real honor to be on with you, and it's always good to hear and speak about things that are really important to us, and that's lung cancer. 

Laura Levaas:

It is.  So Stephen and I met on Facebook, which is where many patients tend to meet when they're looking for information.  So I've known Stephen online for a very long time, but I've never talked to him before, and I might be meeting him in‑person very soon.  But that's not the point of why we're here.  Yeah.  

We focus on lung cancer and these amazing accomplishments that Stephen has made.  So, Stephen, you were part of the Chicago White Sox organization.  How did you find out that you had lung cancer? 

Stephen Huff:

Yeah, that's a great question.  And I think that dating back to 2014 and 2015 I had just finished up my playing career as a baseball player, and I had decided to go back to school to become an educator.  And so I was in graduate school transitioning from player to now teacher and coach.  And as I kind of was in my second year of graduate school, I noticed that I had some symptoms and some changes to my body.  I think because I was transitioning and I wasn't exercising as much I just said, well, this is part of getting older—this is what it's like to put on weight and to not be in the best shape that you used to be in.  So I definitely didn't think anything out of the crazy normal.  And as a year or two progressed, I did notice that the symptoms started to get worse.  What started out as some really mild coughing and really, really, really mild shortness of breath manifested into this really naggy cough and this crazy wheezing at night.  And what eventually led me to the doctor in 2017 was I had a lymph node in my neck area.  I could tell it was not normal.  It was a little bit big, and so I wanted to get it checked out. 

Laura Levaas:

Okay.  Then how did they figure out it was lung cancer?  Did they do a biopsy? 

Stephen Huff:

Well, so even after the first time that I went in to the doctor it took a total of about six months…

Laura Levaas:

Wow.  

Stephen Huff:

…because I just kept being reassured that this wasn't anything serious.  It was something that was not necessarily something that needed to be checked up on.  It was something minor, and so I kept doing the basic testing, you know, the X‑rays, which came back negative—the antibiotics which weren't working.  And so after like three or four months, finally we had the next test done, which is a CT scan, and that ultimately led to the diagnosis. 

Laura Levaas:

So what was your first treatment? 

Stephen Huff:

So my first treatment was a targeted drug.  It was the alectinib (Alecensa).  It's my first and only treatment up to this point. 

Laura Levaas:

Stephen, can you tell me a little bit about The Huff Project and what that's all about? 

Stephen Huff:

Definitely.  So after my diagnosis, I was driving in my car one day, and I pulled up next to this car that had a breast cancer awareness license plate. And I don't think that I had even noticed these license plates up to this point in my life, so naturally I said to myself, “Well, when I get home, I'm going to order the lung cancer awareness license plate, because I want to start, you know, to advocate, and I want to start to do things for the disease that I have.”

And it's not something that is very common in any state actually.  I think there's maybe a handful of states that have a lung cancer plate.  So I said, naturally, that I wanted to get one for the state of Tennessee. 

Laura Levaas:

I did the same thing for Colorado, and then I realized it's actually really hard.  

Stephen Huff:

Yeah, same in Nashville or Tennessee, same thing.  And, of course, if you put a challenge in front of me, most of the time I'll accept it, and so I said, “Hey, let's get one for Tennessee.  How hard could it be?”  And one of the first things that I found in reading the qualifications is that you had to have a beneficiary, and nonprofit for the funds to go towards.  So my wife and I, Emily, we started The Huff Project as a way to hold this money, and it really blossomed into a much bigger thing than that, because we wanted to do more.  We wanted to raise a lot of money.  We wanted to raise awarenessand so 2018 and 2019 now we've raised over $100,000 for lung cancer. 

Laura Levaas:

That's an amazing accomplishment.  

Stephen Huff:

Yeah.  It's cool.  I mean, honestly it's something that started out as really just an idea.  I think we just talked about it at dinner one night and said, what's stopping us?  Why can't we raise money for lung cancer, why can't we do this, and it's something that we are very excited about, we get a lot of fulfillment out of, and it's kind of just our way to give back. 

Laura Levaas:

Right.  So for those of you who are watching who don't know much about advocacy or fundraising, Stephen's story is very significant, because he was diagnosed in 2018, and they presented a check to—is it the Vanderbilt‑Ingram Center? 

Stephen Huff:

Yeah, Vanderbilt‑Ingram Cancer Center. 

Laura Levaas:

$25,000 for cancer research, and that was in less than a year, right? 

Stephen Huff:

Exactly.  

Laura Levaas:

Amazing. 

Stephen Huff:

Yeah, it's so cool, because when we started to raise money we wanted to know where the money was going to go, obviously, and so when we kind of made this partnership with Vanderbilt. They even gave us like three or four different options that we could choose from to fund.  And we elected to choose one that was a blood biopsy test that could rule out early detection lung cancer, and it actually bridged the gap between them getting a huge federal grant, so we're really proud of that. 

Laura Levaas:

That's great.  That is really, really good news.  That's so awesome.  So tell me a little bit more about your wife, Emily.  I watched the video on your website right before we talked, and so you got your diagnosis right before you were about to get married.  

Stephen Huff:

That's correct.  So when I was diagnosed, Emily and I were engaged, and we were supposed to get married in three months.  And I remember after my diagnosis I just kind of was laying in bed one night not able to sleep and I leaned over and I go, “Should we move forward with this?  Like, this just seems so crazy.”  And she's like, “What do you mean?  Of course.” 

And for me that was a really turning point, because, I don't know, she just kind of gave me the confidence that, “Hey, this isn't something that's going to define us and sink us down.  This is only going to bring us closer.”  And obviously I knew I wanted to marry her before I asked her, but that was like the topping on the cake for me, because it's like, “Wow, okay.  You know, she's got this killer awesome attitude, and I need to learn from her.”  So, yeah, we've been married for over two years now. 

Laura Levaas:

And I hear that there's some news coming.  Feel like sharing? 

Stephen Huff:

Yes.  Yes.  Yeah, absolutely.  So it's funny because when I was diagnosedmy oncologist was so nice, Dr. Leora Horn at Vanderbilt.  She was—she looked at us.  She said, Stephen, you're young, and this is not just you.  You're going to live with this like it's a chronic disease, and so if you're thinking about starting a family, then you should make the accommodations now before you start.  And I said, “Well, that's really the last thing on my mind. I'm not worried about kids or anything.”

Laura Levaas:

Right. 

Stephen Huff:

And thankfully Emily was so—she's so sweet and she's so wise.  She's like, “Stephen, let's just do it.  Let's make the arrangements so that we can at least have the option.”  So we went to Nashville Fertility Clinic here in Nashville, and we made the arrangements.  And so I think about a year maybe a year-and-a-half into my journey with lung cancer when we started to get a lot of hope just to see like these drugs are doing phenomenal things, we just asked ourselves, “Hey, look.  We're not getting any younger, and if we live a long time, like we're going to regret all the time we wasted not starting a family.” So we started the IVF process back in the summer of 2018.  And so over the course of, gosh, I don't even—I think it was about a 10‑month process.  I'm happy to say that my wife is pregnant. 

Laura Levaas:

Congratulations! 

Stephen Huff:

Yeah, thank you.  With a little baby boy, and he is going to be here in February.  

Laura Levaas:

Oh, my gosh. 

Stephen Huff:

I know.  It's like crazy. 

Laura Levaas:

Just around the corner.  I have a little boy.  Watch out is all I've got to say.  

Stephen Huff:

Well, it's just crazy, because the paradigm has shifted so much in the lung cancer world, and I'm living proof that research matters, and my son is living proof that research matters.  He's not here yet, but he's on his way, and that's only because of all of the advancements that have been made in lung cancer. 

Laura Levaas:

Yeah.  That is so true.  That is so true.  I honestly—I just don't even know what to say, because I was going to ask you do you feel like the tide is turning, and I think that we can see that it is. 

Stephen Huff:

Yeah.  I couldn't agree more.  When I was diagnosed and I got on the Internet, the only thing I could find was the doom and gloom, the low survival rate, all this.  And when I brought all these things up with my doctor she's like, “Stephen, look, like those numbers are so far lagged.  We have come up with so many more drugs, and we have so many coming in the pipeline.  We have had more drugs in the last five years than we ever did beforehand.” 

And so to me that was just the confidence boost that I needed, because nobody's going to willingly bring a child into this world if they don't truly believe that they can live with this disease for a long time.  And we just have a lot of hope.  We prayed a lot about it, and we think that for us that this was the decision that we wanted to make, because we want to live our lives to the fullest and look to the future.  

Laura Levaas:

So what—on an ending note, what advice would you give to somebody who is newly diagnosed with cancer? 

Stephen Huff:

Man, that's a great question.  Don't use Google.  No. 

Laura Levaas:

That's good advice actually.  

Stephen Huff:

I honestly, as hard as it is sometimes to find support, I would try to find someone or a support group, somebody that you can talk to openly, because, you know, for guys I think it's really hard to open up emotionally, especially about our thoughts and our fears.  We're already kind of like these stubborn, I would say stubborn males, and so sometimes it's difficult to talk to somebody about your true thoughts and feelings. 

I know that there are people out there that are so, so inspiring and that all you need to do is just hear them talk or talk to them for a couple of minutes, and they can flip your perspective upside down.  You can go from feeling negative and feeling bad to feeling very positive and having a lot of hope, and it's all in one conversation, you know? 

Laura Levaas:

I think that's amazing.  Thank you so much, Stephen, for sharing your story.  It's great on so many levels—number one, because you know the statistics, like it's mostly women who are diagnosed with lung cancer.  I was at an event last night with a lot of lung cancer survivors, and there was only one man in the room.  So it's really good to have the male perspective. 

I think it's so amazing that you and your wife are expecting and that that is just something that—I mean, you obviously gave it thought, but it's like it's an option for you and 10, 15 years ago it might not have been for people that were diagnosed.  And my biggest takeaway for anyone who is watching is just to realize that patient advocacy can really make a huge difference in research, and Stephen is a prime example of how his project has raised so much money for lung cancer research. 

So, Stephen, thank you again for joining us from Franklin, Tennessee, Centennial High School. 

Stephen Huff:

That's right.  It's been a pleasure, Laura.  And I appreciate all that you do as well, because it's the advocacy, the voice, the presence that you have, whether you know it or not, people see that and people are inspired by that. And I commend you for all that you do for the lung cancer community, because it takes a special person to just take this thing and be an example, and I don't know that there's anyone else that does a better job of it. 

Laura Levaas:

Oh, gosh, thank you.  That makes my day, thank you very much. 

Stephen Huff:

Absolutely.  

Laura Levaas:

Okay.  We'll talk to you next time.  Thanks for watching, everybody. 

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.

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