Erin was diagnosed with multiple myeloma after experiencing back pains that got progressively worse.

Initially dismissing the pain and thinking it was related to aging, he didn’t let it stop him from doing anything. Several months later, it got so bad that he collapsed to the floor after a sneeze.

When an X-ray didn’t show anything notable, he was given muscle relaxers and when those didn’t work, he was then sent to a physical therapist and a chiropractor.

Already in too much pain, he was urged by his chiropractor to ask his doctor for an MRI. They found six compression fractures in his spine and learned he probably had multiple myeloma.

He shares how he did everything he was told to do, avoided using Google, how much support he got from his family and employers, and the connection he shared with his multiple myeloma specialist.

In addition to Erin’s narrative, The Patient Story offers a diverse collection of multiple myeloma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Pre-diagnosis

Initial symptoms

My back hurt. I thought, I’m getting old. Then it got progressively worse to the point [where] I was walking around bent over with a cane. I’m stubborn [so] it didn’t stop me from doing anything, but I was moving really slow and in a lot of pain. My wife said, “You need to go to the doctor.”

I put up with it for several months. I was taking handfuls of Aleve for it. I would later find out that was the worst thing for my failing kidneys. You can’t take it with kidney problems so I was not doing myself any favors there, but I didn’t know there was anything wrong with my kidneys.

One morning, [as] I was getting dressed for work, I sneezed and collapsed to the floor. My back gave out completely [and] I couldn’t get up.

Melissa helped me get on the bed. I lay there for a while and tried standing up again. It felt like I had my strength back. I felt like I was okay.

I went to work, sat down in my chair, and started doing work. I tried to get out of the chair and I couldn’t. I couldn’t put anything on my feet. I had nothing.

Melissa picked me up. They wheeled me out to her car in my office chair because I couldn’t walk.

We went to the doctor. My primary care physician wasn’t available so we saw the first guy we could. He did an X-ray of my back, didn’t see anything, looked at me, said nothing was wrong, gave me some muscle relaxers, and sent me on my way.

Learning about the possibility of cancer

I thought I had a slipped disc or ruptured something. In my brain, I’m headed for back surgery. I was joking with Melissa at one point and said, “It’s cancer. I know it’s cancer,” but I was screwing around.

He said, “I don’t know what to tell you. You’ve got cancer. It’s probably multiple myeloma or lymphoma.” That was a shock.

I had six compression fractures in my spine; that’s what I was walking around with. Melissa and I collapsed into each other in this big teary hug. She took me by my face, said, “We’re going to beat this,” and we cried some more.

They suspected I’d had it for quite a while. About a year prior to having back problems, I either broke or cracked a rib. When I went in, my doctor said, “There’s no point [in doing an] X-ray because there’s no treatment for it. You just got to heal.” I broke it just coughing and they suspect that was probably the myeloma also.

There was no incident. I never fell. I never lifted something I shouldn’t. There was nothing that should have caused them so it was quite shocking.

Getting a bone marrow biopsy

I had to get a bone marrow biopsy, which I’m sure anybody will know is painful. He had to do a manual one. I was bent over the table. My poor wife had to watch it from behind. She can handle anything, but she got about green watching it.

He said, “It’s going to hurt. I’m just going to tell you.” When they did it, I screamed out, “Oh, fudge!” They all bust out laughing and said, “We’ve heard the other word so many times. You’re the first person that’s ever said ‘fudge.’” I said, “There are people outside this door. I didn’t want to be screaming the F word.”

We were at the oncologist all afternoon then we had to rush home. I was the president of the Chamber of Commerce and we had our annual banquet that night. I’m sure I could have canceled, but I was going to be there.

Only two people there know I’m dying. I can’t walk so I’m moving from table to table, just using whatever to hold myself up. We somehow got through that night.

The next couple of days, we started letting people know what was going on.

Treatment

Oral chemotherapy

Oral chemo was first. It was 13 chemo pills at a time. I would sit them on the table and stare at them. Even though they’re my ally, they’re my weapon, I hated that.

I would be up late and watch the late-night West Coast NBA game. I became a big NBA fan because I watched a lot of basketball.

Then it led to infusions several weeks down the line.

Chemotherapy infusions

I tolerated the infusions pretty well, but the chemo they were giving me caused allergic reactions so they gave me a script for some anti-allergy medicine. They said, “You have to take this before your first chemo and then [each] one after that.”

I forgot to take but I didn’t want to tell him that because I wanted to get the chemo rolling and didn’t want to delay it even just a day.

The first infusion takes 8 or 9 hours. They do it really slowly because they want to see how you tolerate it. At least halfway through, I had [an] allergic reaction.

I could breathe, but it was bad. I never told them because I didn’t want them to stop. I wanted to get through chemo and get this moving, which is reckless and dumb, but I made it through.

I’d miss a day of work and come back the next day. A lot of times, I’d go home early because it would really wipe me out, but I never had stomach problems or anything with it.

It was boring more than anything else because you sit in the chair for 4 or 5 hours. You can only read so much. You can only play on your phone so much. You can only nap so much.

I had about six months of infusions.

Stem cell transplant

I did a bone marrow biopsy in May because we were originally hoping for a May transplant. The number hadn’t gone down enough. It had gone from 80 to 25, but you have to be below five to do the transplant. That was a bummer because we were ready for this.

I met my myeloma specialist Dr. Baljević in April. He was a saint. We were very blessed to have a specialist just an hour away.

Because of insurance reasons, I had to get the transplant at a different hospital system than my oncologist so I got handed off midstream.

They gave me the binder for the transplant. They sent me a bunch of YouTube links and said, “Watch this. This is exactly how it goes, what you go through.” I sat and watched and I was in tears.

It was traumatic. They talk about melphalan, [which] wipes out all your white blood cells, takes you back to zero, and how dangerous that is. The idea of harvesting really freaked me out. It just seems so scary.

I thought, I can’t do this. It’s going to be too hard. I sent it to my folks and my mom was devastated watching what I was going to go through. My wife would tell you I was adamant, but I picked myself up and realized this is the best way to keep living so we got to it eventually.

You’ll be in the hospital for three weeks or more and be isolated. This was pre-pandemic so we weren’t wearing masks. I’m going to be essentially alone. It was very overwhelming. My psyche was pretty fragile at that point so it really broke me.

Navigating the emotional path to a stem cell transplan

My family was my big driving force. I was mostly thinking about my kids and Melissa. The kids were 13 and two. They need a dad. I can’t leave them now. God bless my wife, I didn’t want to leave her alone to have to do that.

They were incredibly supportive. Ainsley, our 18-year-old, was 13 at the time. She had a really hard time with it. She had some breakdowns, but she talked to somebody, had some help, and got through it.

I remember telling her, “All I need from you is to keep doing well in school, keep doing your homework, keep going to class. The last thing I need is to have to worry about you failing school or having problems,” and she kept her end up. She’s an honor student. She’s amazing.

We were blessed by our youngest, Addison. It took a long time for us to get pregnant with her. We’re convinced God sent her at the right time. She was two so she didn’t know what was going on. She was such a light. She was so much fun. Watching her learn and grow was so inspiring. I know she kept her mom sane.

Preparing for the stem cell transplant

A week or so before the transplant, they harvest your stem cells. I had to go in the day before and get a shot that’s supposed to jumpstart their productivity.

I had to be there early in the morning. My dad took me to Omaha. We had to be there two days in a row.

I had a port in and they hook you up to this washing machine-looking thing. You sit in the chair for several hours while they harvest your stem cells. Then they put them back in after they cleaned the bad stuff out. I’d do that twice.

It didn’t hurt. It was just very daunting. They were able to harvest enough for two transplants. You know how this disease is. I may face that again down the road so that’s there, which is nice to know.

Side effects of the stem cell transplant

They told us ahead of time, “You’ll smell cream corn.” It’s the weirdest thing. Everything smells like cream corn. Even weeks later, once in a while, it would smell like cream corn.

Within 24 hours, I got really sick. I was in really rough shape. I got really sick, couldn’t eat anything, couldn’t hold anything down, and couldn’t get out of bed. As weak as weak can be. They tried everything to make you not as sick.

They would say, “Go walk. Walk all you can walk.” A lap around that floor and I’m practically being carried by Melissa by the time we get back to the room because I was so weak.

They were discussing putting a feeding tube in. Finally, they said, “There’s one more thing we can try. It’s called Marinol, a synthetic THC.” They gave me that.

[After an] hour [or] two, I was on the upswing. It worked so fast and so effectively that by the next day, I was over the sickness. I was able to keep things down finally.

I said, “I have to do this again. I’m going to tell him to start with that.”

My wife was working through all this and, God bless her, she’d drive to Omaha after work every day and stay with me. Sometimes she’d stay the night. Otherwise, she’d drive back and come back the next day. She was with me every single step of the way. We had a few other visitors, too, which was nice.

About the third day I was home, I’m bored to death because I’d been alone for three weeks in a hospital and then another five days in the Hope Lodge. I’m not talking to any human beings so I went to work.

I got dressed, put a mask on, got in the car, [and] went to work. This is pre-pandemic, but they said, “You have no immune system right now.” I walked in the back door. A couple of my staff were right there and they looked like they’d seen a ghost. I must have looked terrible.

I only stayed for an hour, said hi to people, caught up with what I’d been missing, and went home. I didn’t tell my wife ’til way, way, way, way later because I knew I was going to be in big trouble. I did that a couple more times in the next two weeks.

About the third week, I decided I’m going to go back to work. It was a few hours at first and then the workdays got a little longer as time went on.

Getting full support from work

I have the best employer in the world.

When I first got sick, I get a phone call from my boss. I’m already thinking, What am I going to do? I got cancer. I’m going to miss all this work. I’m screwed. We need the money. I’m gonna have all these bills. My boss says, “How are you doing?” I said, “Oh, my back, I’m in ICU, I’m dying.”

He said, “Listen, I don’t want you to worry about money. Whatever time you have to miss, whatever goes on, we’re going to pay your full salary the whole time.” I was in tears. Who does that? He’s a man of his word.

I missed so much work between weekly chemo, doctor’s appointments, and the stem cell transplant. Never missed a dime so I had a real desire to get back to work, honestly.

I love my work. My wife will tell you if I’m not at home, I’m here. I wanted to get back to work to show him that this was important to me and that I appreciate it. Short days got longer and longer ’til they were back to full days. 

Some maturity happened through this. You get a different sense of what’s important. You realize the things that you’re going to miss if you go, the things you’re going to leave behind. That’s all that matters to me now.

Multiple myeloma is a lifetime thing. I’m lucky. I’m four and a half years in remission. I have an [upcoming] appointment and that could be the end of it for all I know. We’re going to live while things are in remission.

My wife worked in health care, which was a blessing when I got sick. When my back broke, she dressed me, showered me, put my socks on, and put my shoes on. It humbles you when somebody has to do that stuff for you.

I can never repay everything my wife’s done for me. There just isn’t a way so I try to make our life as good as we can because she deserves it and we deserve it.