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Choosing to Thrive, Not Just Survive: Jessica’s Story

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Published on April 16, 2020

Key Takeaways

“Let’s do this…we could be the game-changers...it just takes that one person to light the fire under several people,” says Jessica Barnett, who raised more than $52,000 for cancer research in 2019 and was honored as The Leukemia & Lymphoma Society’s Woman of the Year.  

Jessica was diagnosed with chronic lymphocytic leukemia (CLL) and small lymphocytic leukemia (SLL) in 2016. Six months later, her older brother was diagnosed with stage IV acute myeloid leukemia (AML). He passed away in 2019. Jessica’s dad is also living with non-Hodgkin lymphoma.

Watch now to hear how Jessica turned her family’s tragedy into an inspiring story of hope and an unwavering commitment to curing cancer.  

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Transcript | Choosing to Thrive, Not Just Survive: Jessica’s Story

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.

Suzanne Mooney:

Hello and welcome to Patient Power. I'm Suzanne Mooney coming to you from Chicago, Illinois. Today I'm speaking with Jessica Barnett, The Leukemia & Lymphoma Society's 2019 Woman of the Year. Jessica raised an incredible $52,000—actually, more than $52,000—in just 10 weeks last year. And today she's joining us from Las Vegas, Nevada. Jessica, thank you so much for being here.

Jessica Barnett:

Thank you. Thank you for having me.

Suzanne Mooney:

And first of all, congratulations. That's a huge accomplishment to be Woman of the Year. So great job.

Jessica Barnett:

Thank you.

Suzanne Mooney:

And this is clearly a very personal cause for you. Would you be willing to share your family's story with us and what you've been through these last few years?

Jessica Barnett:

Of course. So, I was diagnosed with CLL, SLL in 2016. The way my story unfolded was I was diagnosed with stage 0 leukemia from a bone marrow biopsybecause my white blood cell count was very high. And then I was sent to California, and they told me that they were going to extract a lymph node, because they believed that it was in my lymph nodes too. So they found stage IV non-Hodgkin’s lymphoma, which they told me was a second diagnosis at the time, which I'm learning now that it kind of coincides. Some people have the SLL that they find in the lymph nodes and others don't.

Six months after that, my older brother that was three years older than me was diagnosed with stage IV AML and struggled tremendously. He went through probably over a hundred blood transfusions, a heart valve replacement, brain bleeds, you name it. And at the same time, my dad had been diagnosed with non-Hodgkin’s lymphoma that presented as a mass that was in his chest, the size of a football wrapped around his heart and his lungs. We kind of divided as a family and tried to be caregivers. We just split up the duties, and my mom was caring for my brother at the hospital, and then I was caring for my dad at home while he was going through chemo and while I was being sick.

Suzanne Mooney:

So all three of you at the same time. And you, so you were diagnosed first. Do you think that your diagnoses for your multiple cancers, do you think that influenced them being diagnosed sooner, because it was something that was on their minds, and then they went in to get checked? Or how did that go?

Jessica Barnett:

So my brother had bruises that he didn't tell anyone about for over a year, he had TKI, he had all of the main symptoms of leukemia. He did not have health insurance. So he did not seek treatment. It ended up—he had a very bad sore in his mouth, and that's what prompted him to go to urgent care, and it wasn't clearing up. And then that prompted him to go to the hospital.

As far as my dad, I remember having a conversation because my dad had this lingering cough that wouldn't go away. And I had taken my dad and my children out to ice cream and I said, "Dad, is this something that you think could be cancer?" He's like, "No, it's just a bad cold that's lingering." And I said, "You better check." And he said, "Okay, if it gets worse, I'll check." And then his story kind of started unraveling with that.

Suzanne Mooney:

Oh, and I'm so sorry to hear about your brother. That was just last year?

Jessica Barnett:

Yeah, January 29th he passed. So a year ago, yeah, in January.

Suzanne Mooney:

First of all, what did you do for treatment?

Jessica Barnett:

So I did rituximab (Rituxan). I did it for, once a week I would be admitted to the hospital over the weekend, because I also have some other underlying health conditions. I have a dual chamber pacemaker that was put in at 31, and I had renal failure with both of my kidneys, with the pregnancy of my daughter and went through 27 surgeries during my pregnancy. So when it came down to it, I informed the doctor, I'm always the 0.001 percent, and he didn't waver in that, thank God admitted me to the hospital, had Rituxan, and my blood pressure would plummet. So we did once a week I would go into the hospital over the weekend after I would get off of work, and then we'd do two months off, and I was told, "This is all palliative. It's just to help with the pain, this is not your cure." And it really did help me.

The side effects that I experienced from the Rituxan, the benefits outweighed them dramatically. I mean, I felt alive again.

Suzanne Mooney:

And how are you doing now? Are you still on any treatment now, or are you on watch and wait? What is life like?

Jessica Barnett:

Yep, I'm on watch and wait. I had some stuff come up the other day. I woke up, and I have bruises all over my legs and all over my arms. So the first thing was a call into my oncologist to see where I'm at, my numbers, and hopefully that appointment will come today. He's trying to get me in today. He wants me to come in after the office is closed, because he's worried about my numbers being so low. He wants to prevent as much exposure as possible.

Suzanne Mooney:

You have been through a lot, you've survived a lot, and you sound like a fighter. Have you always been like that? Have you always been someone when something comes up you're going to get past it and face it no matter what, or what do you attribute your tenacity to?

Jessica Barnett:

I would like to think that, but you know, cancer being—it shook my family to the core. It shook my faith, it shook everything, and I had my bad days. I remember walking around the house just crying and not knowing what to do. I was like a lost puppy and then, I've always been the type of person that's, I'll cry for a couple of days, and then I get really angry. I get like, "No, this isn't going to beat me. I'm not going to allow this to do this. I'm not going to just survive. I'm going to thrive."

And that's where The Leukemia & Lymphoma Society campaign came in, and I was like, "I have to get out there. If there's no cure for CLL/SLL patients, then I'm going to make the money available for the research, so we can get a cure." Because I'm watching all these support groups and all these ladies and these men talk of all of their side effects and what they're experiencing. And I'm like, "I have to help them for the legacy of my brother and my family." And even though my family has, my brother has passed, his story will forever live on, and he still has a story to tell, and I will carry that torch for as long as I can.

Suzanne Mooney:

So what's next for you?

Jessica Barnett:

So I just signed up to do the American Cancer Society campaign Power in Purple, which is a bunch of amazing women that come together to try to raise as much funds as possible. That just started, and it continues until June 1st here in Las Vegas. So I have committed myself to raise $2,500 which is not in my vocabulary. We're shooting for the top. So right now I'm rallying all my donors and hoping that my why will become their mission. And maybe if I can just inspire one person to jump on board with fundraising, whether it be for blood cancer or any kind of cancer across the board, let's do this, because we could be the game-changers in it. It just takes that one person to light the fire out of under several people.

Suzanne Mooney:

Well, I definitely think you're that person lighting the fire. I mean I can feel your passion and your inspiration. So thank you for all you're doing both with fundraising and with your advocacy work and just making people aware. And before we wrap up, is there anything that you want to leave our audience with? Something you hope they learn either from your brother's story or from the advocacy work or fundraising that you're doing?

Jessica Barnett:

I think even though a lot of people say, when you have cancer, the first thing they tell you is "Just keep fighting, keep pushing." I say that and I catch myself sometimes saying fighting, but everybody that has cancer fights, whether it's a long battle or short battle, we all fight in some way. So maybe not to fight, just say, "I'm living with cancer, and today I'm having a good day. Tomorrow I might have a bad day." But this expectation of everyone saying, "Just keep fighting," is sometimes really hard to battle, because it feels like this mask that you're wearing. And you can't really let down your guard and say, "I'm scared. I'm terrified. I'm on watch and wait, and I'm waiting for the other shoe to drop.  You know, when is that time going to come?"

So just remember those words on your bad days, just remember to thrive. Don't survive, thrive. Whether that's getting up out of bed for, I'm going to get emotional, whether that's getting up out of bed for that one day I want you just to pull all of that energy and come together and say, "I can do this. I can get up out of bed today. And even though it's a little goal that I can accomplish, I'm going to do it." So set these little goals for yourself and keep going as much as you can. Thrive. Thrive.

Suzanne Mooney:

Your dogs are thriving. Jessica, we were talking about your kids before we hopped on and started recording this, and I just, they're so blessed to have you as a mother and as a role model. So thank you for what you're doing for them and what you've shared today with our audience and just thank you for everything that you're doing.

Jessica Barnett:

And thank you. Thank you for allowing me to have this platform. Thank you guys for listening. I reached out to you guys and I was like, "I have to get this out there." and for you guys to take the time to allow me to share that is just incredible, and I appreciate all of your time and all the work you guys are doing, because even though you guys are behind the scenes, you guys are working just as hard as any cancer patient or anybody's working.

Suzanne Mooney:

Thank you so much, and I have a feeling that we'll be talking to you again, not too far in the future to check in and see how you're doing. So thank you for your time today.

Jessica Barnett:

Thank you so much. Hopefully I can have my dad here with me the next time.

Suzanne Mooney:

That would be fantastic. Yes, we would love to meet him.

Jessica Barnett:

Yes.

Suzanne Mooney:

So for all of you watching at home, thank you for joining us today. I'm Suzanne Mooney from Patient Power. Remember, knowledge 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.
 
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