Patrick’s Stage 2 PMBCL Non-Hodgkin’s Lymphoma Story

Patrick was diagnosed with stage 2 primary mediastinal B-cell lymphoma (PMBCL), a subtype of non-Hodgkin’s lymphoma.

He shares his story of undergoing hundreds of hours of chemo, advocating for himself as a patient, parenting with cancer and his survivorship journey since remission. Thanks for sharing your story, Patrick!

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Diagnosis

What were your first symptoms?

The first symptom was interesting. I had noticed for a couple of months that I had this bump right on my sternum. That was it. It felt like a bone was popping out, but nothing else of concern. I didn’t have any other symptoms. I was going to the gym a couple times a week, and I was living life normally. 

When I went for my routine checkup to my doctor, I got a clean bill of health. At the end, I said, “By the way, I have this bump on my chest. I’m not really sure what it is. Can you look at it?” He looked and wanted to get it examined. 

We did a mammogram, and that came back inconclusive, so we did a biopsy. They knew that it was a form of lymphoma. They had to remove the actual node, and then they were able to diagnose it as a specific type of lymphoma. 

»MORE: Read more patient experiences with first symptoms of lymphoma

The day itself, I remember going to Starbucks in the morning. It was weird. It’s the first time in my life that I was in line and someone ahead of me paid for my drink.

I thought, “Oh that’s really nice.” I didn’t know it at the time, but I needed to be reminded that there’s still good out there.

I went in for the follow-up with my doctor, and I wasn’t expecting anything heavy as far as news went. I had let some family members know that I was going in for this thing they were looking at, but I wasn’t going to worry about it until I had to. 

The doctor told me, and I remember not even knowing what lymphoma was. I thought it was a bad cold. I was googling it as he was telling me what lymphoma is. He explained it a little bit more, and I just didn’t get it at all. I remember texting my family and calling my wife and my mom. 

I was in complete shock, and so was everyone else. I didn’t know how to react to news like that other than to just try to stay positive. Trying to wrap your mind around what that means and the uncertainty that would follow was a lot to think through. I didn’t know how to react emotionally.

I wound up going back to work for a few hours and tried to keep going. Then I realized I should probably go home and have some time to myself. It was definitely a shock.

»MORE: Reacting to a Cancer Diagnosis

Treatment

What do you wish you had known going into treatment?

Your mind is just spinning. You just wish you knew the whole story. You get it in chunks. You’re told what a certain type of treatment is supposed to look like.

My wife is phenomenal. She was on the computer researching the details of a lot of this very quickly. 

In the process, you’re just anxious to know what all the treatments are going to be like. The outcomes are just going to be uncertain. To some degree, I just imagined getting on a rollercoaster and getting ready for the ride. I just had to let go of me trying to control everything. I just let the process be.

In the beginning, the rollercoaster was just starting to go up that first hill. I had to let the doctors around me and things around me take care of themselves.

At that point, I wish I would’ve known more information, but you just have to let go. 

Describe the mass doctors found

I had a removal of the node, and really what they found was a huge mass pushing up next to my heart. It was pushing forward. That mass of cancer was actually pushing up toward my sternum, so that little node was just the tip of the iceberg. It was part of the huge mass underneath that we needed to address. 

It was inoperable because it was so intertwined with everything else. It wasn’t something I was going to be able to have surgery on and remove, so chemotherapy was my option.

What was your experience with chemotherapy?

I didn’t have any radiation or any other type of treatment. It was straight-up chemo, but it was a very intense dose of chemo. I had 6 cycles of dose-adjusted DA-EPOCH-R at more than 100 hours each cycle.

When I went in, I would go in on a Monday, and I would spend about 6 hours in the infusion center getting one type of chemo. When I was done, I would go home. I would come back Tuesday morning, and I would check in for the rest of the week. 

I started at 8 a.m. on Tuesday morning. They would plug me in, and I’d get going. I wouldn’t check out until Saturday afternoon. During one of the cycles, I didn’t leave until Sunday.

The entire time I was there, I was hooked up and being infused with chemo. Every cycle, it was more than 100 hours I was being infused with chemo in a hospital room. 

Hair loss, neuropathy and generally not feeling well were the big ones.

I lost a lot of the color in my face. Nothing too terrible like getting dramatically sick or anything. During my last round, I did come down with a fever at one point, which had us torn deciding if I should go back to the hospital or not. 

You’re supposed to go back in if you get sick after treatment just because your immune system is shot. We were wavering on that, but I ultimately ended up not doing that because I got some good sleep, and the fever went away. 

»MORE: Cancer patients share their treatment side effects

How did you handle the hair loss emotionally?

I’ve always worn my facial hair a certain way. I was sitting in my office one day thinking about something, and I was scratching my chin. As I looked down, on my laptop there was just a pile of hair. At that point, I realized it had started. 

Shortly after, I shaved what little stubble I had on my head because I wasn’t about to make a mess with that. My wife insisted that I had to keep my facial hair as long as I could. That was a slow process, but eventually I lost all of that. I lost my eyebrows. That was weird. 

I started to not recognize the person in the mirror. Beyond that, it was a great reflection. The person in the mirror isn’t just the person you see – it’s the person inside.

Really, when I looked at myself in the mirror and I was pale with no hair at all, I only recognized myself by my eyes to a certain degree. 

It was a great reminder that I was more than my looks. I still saw the person I am inside when I looked in the mirror, but it was certainly not the person I was used to seeing on the outside. 

»MORE: Dealing with hair loss during cancer treatment

What was the worst thing you experienced during treatment?

The worst thing I experienced would probably be the time I missed with my family. I knew that everyone was rallying around me and supporting me any way the could.

For my kids, things still took place. My son still played baseball, and they still had school. Life went on for them. 

I had to leave the room because I was losing it emotionally. It had only been a couple of days, and previously, I’d been traveling a lot and would be gone for days, so logistically it didn’t seem like a big deal since I was just at the hospital down the street.

For some reason though, that had a huge impact on me emotionally – not getting to be part of their regular life. 

I really missed the normalcy of family life. That was the biggest challenge. I know everybody’s journey is different, but for me, the emotional part was much more difficult than the physical.

I’m not saying the physical parts of it were easy, but the emotional aspect took its toll on me. 

Were there any surprises throughout your treatment?

When you’re a kid growing up, you never imagine that one day you’re going to get cancer and imagine what that will look like. It’s hard to say what was a surprise and what wasn’t.

I was extremely blown away by the amount of support people were showing me. People I worked with, people I hadn’t talked to in 10 or 15 years, my family – everyone was reaching out to me. 

I’m the youngest of 4 boys, and then I have a younger sister. Everybody wanted to help. My mom pretty much moved in with us for 5 months. She dropped everything and came up to support. As much time as I spent in the hospital, I didn’t have that much time where I was alone. I had a constant rotation of people with me. 

Before treatment, you’re thinking, “Man, I can watch a ton of movies because I’ll have all this time.” Leading up to treatment, I had the intention of writing a book, so I thought I’d have all this time alone in a hospital room to write.

It was actually not like that at all. There wasn’t a whole lot of time where I was by myself. When I was, I was pretty much sleeping. 

I was blown away by the amount of support and the number of cheerleaders I had near and far. That was the biggest surprise of all.

Instead of thinking about how difficult my situation was, it helped me to still mentally be engaged in what was going on at work. I still had the opportunity to give back in some capacity. 

»MORE: Working during cancer treatment

Is there anything that might have helped you handle the financial process?

In the beginning, it was one of the stressors because we didn’t know how it was going to affect our family. I guess I wish I would’ve known that that part was going to be okay. 

Looking back, the most important thing was my health. In the grand scope of things, the financial stress was unnecessary. The most important thing is figuring out how to take care of your health. I wish the finances hadn’t been a concern in the beginning.

What helped you through times of great stress?

Knowing that anyone was a phone call away was helpful. The number of people that were there with me was incredible. The staff at the hospital were phenomenal as well. They were the nicest people you’ll ever meet. They kept me busy. 

You’re in there for a long period of time, but they’re coming in every half hour taking my blood pressure, checking in, asking about my appetite and all that, so they helped a lot with breaking up my time in the hospital. I was surrounded by so many supportive people who were beyond giving.

Were there moments you had to advocate for yourself?

My wife did a really great job of advocating for me. One of the biggest pains was the insurance company. My wife went to bat for me. 

One of the things I had to do after each round of treatment was to have a specific shot every day for about 8 or 9 days. That meant I’d have to go back to the hospital after being there for a week. I’d have to go back literally every day just to get a shot. When you’re not feeling well, that’s not really what you want to be doing. 

There was a separate shot that I could get that would only have to be once instead of going in every single day. It was the insurance company that was saying no because it was cheaper to go in every day.

It was frustrating that the insurance company was dictating part of the treatment. My wife went to bat and said, ‘No, he shouldn’t be going back to the hospital every day when he’s feeling terrible.’

Ultimately, the insurance company won. My wife was awesome, though, and figured out how to administer the shot herself. She would pick it up from the pharmacy, and every night she was my nurse and would give me the shot. It wasn’t my favorite part, and I’m sure it wasn’t hers either, but she was a great support.

One tradition we’ve had for years is pizza movie night on Friday nights. When I was in the hospital, we still did it. My wife would get the kids, they’d go pick up a pizza, come to the hospital, and we’d sit in my room and watch a movie on my laptop. 

As much as possible, we made sure their lives were as normal as they could be. They still had a lot of things to look forward to. 

»MORE: Parenting with cancer

Survivorship

How did your cancer affect your relationship with your wife?

It brought us together in many ways. When you have 3 kids, you rarely have any time to yourself. You rarely have any time to do anything or talk about anything. When she’d come see me in the hospital for these extended lengths of time, we’d do a mad libs book or random stuff like that.

We just had more time together than we previously did. That part was nice. I always knew that I married the right person. I knew I had married a phenomenal person. 

Nancy Reagan once said, ‘A woman is like a tea bag. Only when things get hot do you realize how strong she is.’

I would say that’s true for my wife. She was absolutely incredible during the entire process.

Both of us had times where we found ourselves in an emotional state, but she took on so many different roles throughout the process. 

She supported me and made sure the rest of the world kept going. She had to continue orchestrating our kids’ lives and schedules, and she still had a full-time job to tend to. She is just an amazing person. I wish cancer on no one, but some of the joys I’ve gotten from it, I wish for everybody. 

The way in which it brought my wife and I closer together was amazing. It was a stress, and it was difficult, but we got through it together. I couldn’t have done it without her. Her support was nothing short of amazing.

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

The other side of that is that every day I wake up, and that day is a gift. I have to take advantage of my days and give back to others. I am lucky to have each day. Having that realization each day you wake up is quite inspiring.

Advice for someone going through something similar to what you’ve gone through?

Keep going. Know that your attitude is going to be half the battle. Keep going and stay positive. Believe in yourself. It’s a journey that has its ups and downs, but you just have to keep going.

Sometimes you can’t see the light at the end of the tunnel – you might not even know that there is a light at the end of the tunnel – but you have to keep going and trust in the process. 

The entire time, you need to recognize that while you’re going through this, everyone else around you is going through this as well. There are many people that love you and care for you, and they’re concerned.

Many people don’t want to overburden with questions, but they are scared to death for you. I would err on the side of over-communication and share as much as you can. Keep people updated, and as you do, allow them to be your cheerleader. 

Many people in this process feel helpless and don’t know what to do. They don’t know what to do, but they want to help. Let them help. If people are offering to help, let them help because to some degree they’re suffering as well.

No, they’re not going through what you’re going through, but they’re very concerned, and they just want to know what they can do.

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Primary Mediastinal B-Cell Lymphoma (PMBCL) Stories