In Memoriam

During his life, Nick Lenoir made every attempt to share his story of his multiple myeloma journey to give hope to others in the community. In this podcast, Nick says about the disease, "How you approach it and how you cope with it is going to be different, as well as how the myeloma affects you." Listen to learn how he lived well with his diagnosis.

Transcript:

IMF Communications: 
You're listening to a Day in the Life podcast brought to you by the International Myeloma Foundation. We hope this podcast provides messages of hope and resilience for those in the myeloma community and beyond. Today we're talking to Nick Lenoir, who was diagnosed with multiple myeloma in 2016 at the young age of 31.

Hi Nick, it's great to meet you. To begin, can tell me what your life was like before you had ever heard of myeloma — before diagnosis?

Nick Lenoir: 
A lot slower. You know, you say that you think you're busy all the time, but you’ve got time on your hands before myeloma. You’ve got doctor's appointments and you’re running around from here to there and it really fills in that time you thought, “Oh man, just 5 minutes to relax.” No, you’ve got stuff to do. You’ve got to keep moving, whether it's keeping yourself healthy, working out or anything like that. So, to me, life was a lot slower.

IMF Communications: 
That's interesting. That's a different take than a lot of other people have. I mean, I know the bulk of time that the appointments and treatments take, and so forth. My mother had myeloma, so I understand that — it just becomes this huge shift in how you're managing your life. 

I’m curious about how you learned of your diagnosis. A lot of people have a roundabout way of learning about it, maybe back pain or a lab report that reports something out of the ordinary. How were you diagnosed?

Nick Lenoir: 
Right. So, this is actually kind of a neat story. Me and my now fiancée had just started dating and I had been staying the night at her apartment and started getting really bad chest pains, like my chest hurt. So, I started going to a chiropractor, a local guy, and built a friendship with him.

It just wasn't getting better. I had him massage my back because my back was just always out. The masseuse told the doctor, “Dr. Carter, he's got a lump in his back.” So he goes, “Nick, go to your primary doctor, see if she'll send you for an MRI. Your upper back and neck are just not getting better.”

So, I went to my primary [doctor]. She goes, “Nick, you're 31, you're active outside, you hunt, you fish, you've pulled a muscle in your back. Here are some muscle relaxers. Go to physical therapy. Oh, and stop going to the chiropractor.” 

My chiropractor wrote to my insurance company to say, “This is all we have done for him. We know there's more than just muscle damage. He's got something going on with his skeleton.” They ended up approving the chiropractor to send me for CAT scan the next day. My fiancée was with him a few days later when he called me to say,

“Hey, I need you to get up here. We need to talk.”

She and I sit down with him and he goes, “As your doctor, you need to go see an oncologist. As your friend, you have cancer. You have something going on in your back and it's not good.” 

So, I mean, you have that freak out moment. You know, I’m 31. What's going on? So, that’s how I found out — it was my chiropractor.

IMF Communications:
When you were diagnosed, had you heard of myeloma before? When you started reading about it, was it shocking that this is not usually found in younger adults?

Nick Lenoir:
No, never. Funny thing is, I'm not the researcher. I should have been a military man. I just do what I'm told and keep steaming forward. My fiancée, on the other hand, is the one that looks it all up and tells me what I need to know. She's like, “I just can't believe this is something you have later on in life, not at this age.” So, I found out — I just didn't do the research.

IMF Communications:
When you were diagnosed, did you know what stage it was? Was it MGUS, smoldering, or active at the time you were diagnosed?

Nick Lenoir:
So, knowing what I know now about myeloma from seminars and stuff, I had active myeloma. I had a tumor that destroyed my T2 vertebrae. I had over 75% height loss. That's where the chest pain was. Everything was moving when I went to the surgeon. He basically told me, “You're one sneeze away from driving your motor scooter with your tongue. In all honesty, just be careful until we can get you in and taken care of.” That's a pretty scary thing to hear. I was a very active guy, not afraid to work my hands. I worked in the oil fields when I was younger. That slowed it down. You just had to be careful.

IMF Communications:
You mentioned your fiancée; was she your primary caregiver at the time? Is she still? How did she handle your diagnosis and how did you share that with her?

Nick Lenoir:
Yes, she’s still at it. She actually found out at the doctor’s office with me. I think she handled it pretty well. I mean, she hid it from me. I knew she had her moments where she would break down and lose it. It caused some stress in the beginning, just because we're two different personalities and we handle things differently. All in all, she sits back and lets me do what I need to do.

I mean, nowadays, I do everything. She doesn't even go with me anymore; it's just become normal life. It's Monday, so I’ve got to go get treatment and I'm going to feel like garbage for the next three days. It's just become a way of life. In the beginning, though, it was pretty scary.

IMF Communications:
Do you have kids? How old are they and how did they react to the diagnosis?

Nick Lenoir:
At the time, I had a nine-year-old daughter from before my fiancée. We hid the bad stuff from her. We told her it was cancer and that I was going to go. We told her the treatment plan the doctor had laid out for us. She's seen me get sick and get better the next day, stuff like that.

We kept her involved, because when they start feeling like you're keeping it from them or not telling them the truth, they start to worry. But if she knows that we're trying to take care of it, it’s easier, and that's how we looked at it. I now have three more kids since I’ve been diagnosed.

IMF Communications:
How do you relay your treatments to them and what is your outlook with them?

Nick Lenoir:
They're my driving force. In all reality, I'm a dad. We take care of us to be here for them.

Now, my oldest daughter's fifteen, so she knows when it's treatment day. She knows I’m going to have dexamethasone and that I'll be up all night. I keep my pills on the counter in the kitchen. She knows everything that's going on. Every time I've relapsed, we've been very open and honest. We tell her, “It’s back; this is what we're going to do.” She's there for doctor's appointments when we do them on Zoom. Until there's a problem, she stays out of it. The little kids — my next daughter is three, and the twins are 15 months — they don't really know yet.

IMF Communications:
What type of treatments have you undergone since the time of diagnosis? It's been six years, so can you illustrate what that journey has been like for you?

Nick Lenoir:
My first treatment was KRd and that was a clinical trial. We were taken from a two-day KYPROLIS® dose for a minor myeloma relapse to a one-day dose and for first time treatment. I responded really well to that. My brother was a 99% match for stem cells, so I had an allogeneic stem cell transplant. I got a year remission out of all that and it came back. 

I've done Velcade®, which I had a really bad reaction to. I think the first time I had it, my feet went numb. I had a bad reaction in my stomach with the injection, so we stopped. I did DARZALEX®. I can't even remember them all now. There were four lines of treatment before I went in for a stem cell transplant for CAR T-cell therapy.
I got a year of remission out of that. I am now back to KRd again because it worked so well before we went back to it, and because my relapse this time around was slow and pretty minor. We just wanted to make sure we got it because I am aggressive now. There were eight rounds of that approved. By round four, I was considered back in remission.

IMF Communications:
What was it like to have the allogeneic transplant with your brother as the donor? What was it like for your relationship?

Nick Lenoir:
Growing up, my brother and I were the siblings that our parents had to take in two different vehicles if we were going somewhere as a family. We were oil and water. We had two different personalities, two different outlooks on life. Nowadays, I talk to him every day on the phone. If he needs something, I’m there. If I need something, he's there. 

We just lost my dad about a year ago. On top of everything we've done together with the allo stem cell transplant to this, he thinks I owe him now, but I keep telling him I wasn't this bald before that. So it must have been the stem cells that did it to me. But, it's brought us closer together. He's interested in everything that's going on. He's always been there.

IMF Communications:
You mentioned that your children, of course, are why you do everything that you do. What else are your saving graces that keep your perspective on the daily to cope with this disease and get through each day?

Nick Lenoir:
I remember having a conversation with my transplant doctor when I was getting ready to go in for my transplant. I had six months of short-term disability. I had a great job; I had six months of short-term disability. I asked if I would be back to work in six months. He told me, “Man, I don't know.” I said, “If I'm not back to work in six months, nobody gets paid. I don't know any else to say it. I need my good insurance through work, I said, and it's paying for all of this.” He goes, “We'll see.” 

I was back to work in five months and two weeks. My parents work, I work, my brother works. I use it as my escape from everything. So as far as driving force, I would say it's just to keep my mind, right? As long as I don't let anything overwhelm me, it's going through the transplants. I’ve been sick for days. I've gone through all that. You’ve got to find a balance. You can’t let this consume yourself. My driving force, of course, is my kids and my family. But the big thing is balance.

IMF Communications:
Speaking of balance, what do you do for a living? Also, you mentioned you enjoyed hunting and fishing. And are you still able to do some of those activities?

Nick Lenoir:
For work, I am a supervisor in the manufacturing of aerospace parts. I run all the chemical coding rooms and we have a lot going on. There's a lot going on out there in the world and we make some really cool stuff. I have a lot of people that work for me; I've got 25 employees. They all know everything that's going on. They all know what days I'm going to treatments. Any time I have a bone marrow biopsy or anything, they ask me, “Still in remission, right? How's it doing?” It's camaraderie.

As far as hunting and fishing, I still fish every chance I can get. I have to limit the amount of going to the range and target practice just because of my back, my shoulders, and my neck. We go for a few rounds at the range and then I'm in bed rotating through heating pads and ice packs for the next two days. But no, I still try to get out in the woods and do what I can. My oldest likes to go squirrel hunting and we do that a couple times a year. I would like to go back home to northern Michigan this Thanksgiving and do some hunting up there.

IMF Communications:
That's really beautiful. I love Northern Michigan at night, it’s something to be seen for sure. I understand you're also a co-leader of the Nature Coast Florida Multiple Myeloma Group in Brooksville, Florida. How did you become involved with this myeloma support group?

Nick Lenoir:
I was going throughout my first treatments and it felt like I needed some camaraderie. I had just gotten out of my transplant and wanted to meet people that were going through the same thing, maybe the same mindset or the same things eating at them. I found out from the doctors where to look and thought, hey, it's right here. They were meeting 15 minutes from my house, so I called the lady and left a message and I waited and waited. A week went by, then two weeks, and by then I’m thinking, this is weird. So, I called again and this woman answered, Paula, and she was uplifting in her tone and the way she talked. She had been on vacation and didn't have phone service and for a couple of weeks with her family down at one of the islands. She was very apologetic for not getting back to me. She was very upbeat and great to talk to. 
That's how I got involved with the support group. When we went virtual, they told me, “Listen, we're not good with the computer stuff. We're not good at this and that. Can you do it?” And I deal with it all day at work, you know? So I started helping out that way. We lost Paula a little over a year ago. I kind of stepped into the role of full-time co-leader.

IMF Communications:
That's great! What has that experience been like for you as a co-leader, and what are some of the things you've learned or gained from it?

Nick Lenoir:
People have a lot of different ways of looking at things. Just talking to some of the people in the group, as far as everything I've gone through, and watching some of the newer people come in. Some were scared to go through a stem cell transplant or didn’t want to do CAR T. I told them I did CAR T in the heart of COVID-19, and it wasn't even a thought, to participate in a clinical trial. Being that I was a allogeneic transplant, they didn't want to do it on me. 

It was about reminding them that the doctors are not going to do anything to try to hurt you. That's my philosophy. They're there to try to make you feel better. Not a lot of people have that thought. I have a buddy of mine in the group who always wants to go for the next clinical trial. That's the difference between me and him. I stay here. I’m trying to do it here, locally with my oncologist, and he's traveling around the country looking for the next latest and greatest. We need guys like him just as much as we need guys like me, to try and get us to where we can maybe one day have a cure.

IMF Communications:
Speaking of, a lot of what you talked about is self-advocating, whether for this particular patient, always looking for the next trial, or enrolling in a clinical trial yourself. The IMF always believes that knowledge is power and that patients should be as informed about their diagnosis and treatment as possible as they go through the process of dealing with all of this.

What kind of advice would you give to a patient who is a little reluctant to ask questions of their doctor or to find out about new trials? How would you recommend that they self-advocate?

Nick Lenoir:
Take a friend with you. If you're scared to ask, get somebody to go with you that will talk to them. Tell them your feelings. You're not going to hurt a doctor's feelings. They know you're just scared, confused, worried. They sometimes get numb because they deal with us all day long. It's just a matter of finding that doctor that you feel comfortable with and will take the time.

If you don't feel that, then go to the next one. Or, if you want to stay where you're at because they're the latest and greatest, then get somebody that will talk for you. But don't not ask the questions, because there is an answer. And normally, it's not as bad as you think. I mean, everything here has all been done before. You're rarely ever going to be the first or the second. A lot has been done and you're not the only one going through it.

IMF Communications:
Yelak Biru, the CEO of the IMF, is a great example of somebody who's carrying on with a full career and leading an organization while living almost 30 years with this illness. What does the quote, “We are not our disease” mean to you?

Nick Lenoir:
I have a shaved head with a full beard. I work out every night. I go to work five to six days a week. I come home and take care of my kids. Myeloma is not stopping me from living my life. It might not be the life I had before or the life I thought I was going to have, but I'm pretty happy with what I’ve got going on. If I want to do something, I go do it, you know what I mean? I built a deck out back by my pool; I put a roof over my house. Did I feel sore? Yes! It’s just different.

IMF Communications:
So, it's a new normal for you. Is there anything that I haven't asked you that you'd like to share with listeners?

Nick Lenoir:
Ask the questions, and know you’ll have bad days. I’m not going to lie, I even felt down in the dumps today. I had treatment last night. I worked 10 hours today. That's life. That's how the cookie crumbles. So, I don't let it slow me down. You can't, because the minute you stop, it all catches up. You just have to stay ahead of it.
And don't be afraid to ask questions. I mean, that’s the biggest thing. And don't ask Google or Web M.D. I know everybody says that, but everything has changed so much and stuff on the Internet can be so behind. Go to your doctor, ask them questions.

IMF Communications:
Exactly, there are so many new treatments. It seems like every day, there's a new drug approved for my mom. Or every few weeks. Also, the disease plays out differently in every individual. My mom lived with myeloma and I've met so many patients. It's so different for each individual. How you approach it and how you cope with it is going to be different, as well as how the myeloma affects you. I think that's important, for people not to just read the Internet and think, Oh, this is how it's going to play out, because they don't know. I don't know. 

Nick Lenoir:
And I've had radiation treatment. Everyone is like, “Oh, I didn’t know you had radiation. You didn’t get sick?” I’m like yes, I went after work and went home afterwards. It didn't affect me like it's affected other people. All the drugs are different, and it's just great that we have the war chest of drugs now that we have. I have people in my support group that are 12 or 14 years in. I know that when they started, there was one drug. Now, we've got so many that it's just about finding the right combination that works for you.

IMF Communications:
That's great. So, Nick, I want to thank you for being our guest today. I know your story will be an inspiration to all of those who are facing any kind of adversity, be it with their health or in their personal lives. And I thank our listeners. Thank you, Nick.

Nick Lenoir:
Thank you very much.

IMF Communications:
You've been listening to a Day in the Life podcast brought to you by the International Myeloma Foundation. To learn more about the IMF and myeloma, visit us at myeloma.org.