Non-Hodgkin Lymphoma Cancer Stories
Primary Mediastinal, Stage 2
“I’m a little more paranoid than I used to be. Going through the process, my wife and I were trying to figure out anything that could’ve potentially caused the cancer. Was it the weed killer we used on the yard? Was it the type of pans we were using? Now we’re super particular about anything that has any potential cancer-causing agents and are always being watchful of that.
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.”
Name: Patrick Mulick
Primary Mediastinal Large B Cell
1st Symptoms: Bump pushing up on sternum
6 cycles of dose-adjusted Etoposide, Prednisone, Vincristine, Cyclophosphamide, Doxorubicin, and Rituximab (DA-EPOCH-R) at more than 100 hours each
Total of more than 600 hours of chemo infusion
Status: In Remission
Table of Contents
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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 check-up 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.
What was your biopsy like?
The first one didn’t take very long at all. You just lay down, and they stick this needle in you. The second one where they had to remove the actual node – they knocked me out completely for that.
How did you react to your diagnosis?
It was a day like any other day. I knew I was getting test results back, but I tried not to worry about it. There wasn’t anything to worry about until there was something to worry about. I didn’t know it was going to be something that was life changing.
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 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.
How did you break the news to your loved ones?
With my extended family, it was over a text very quickly. Then I called my mom. With my direct family – we have three kids, who were 2, 5, and 7 at the time. We gave it a little bit of time before we talked with the kids. We wanted to wait and get more information and be more stable emotionally before we talked with them.
It was really difficult because we actually had a nephew pass away six months earlier from a rare form of brain cancer – he was 2 years old. We were fresh off of that experience, and the kids had that fresh in their minds. We knew we wanted to be careful about how we had that conversation with them. We sought out some help from the hospital to figure out how to talk to them about it.
Because we were emotionally calm, they were able to stay pretty calm. Plus, we told them after we talked, we were going to go out to dinner and have some ice cream. They were fine once it was over. Throughout the entire process, I don’t think one of my kids shed a tear, and that’s okay. I don’t think they fully understood the gravity of what I was going through.
When they’re older and better able to understand the details of it, I’ll explain it to them then. They knew as much as they needed to know. They took it all very well.
Was there anything you wished 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.
Why didn’t you have surgery to remove your cancer?
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.
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 six 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 six 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, and I wouldn’t check out until Saturday afternoon. During one of the cycles, I didn’t leave until Sunday.
What were the side effects you experienced?
Hair loss. That’s what everybody goes through, I guess. It’s funny because I’ve always lived my life not having any hair. Ever since I got out of college, I just started shaving my head or keeping it really short because I’d been balding.
When I got diagnosed, I was like, “I’m not going to be denied this opportunity to lose my hair.” With what time I had, I grew some of the stubble out just so I could lose my hair. I lost my hair after the first cycle.
I definitely experienced nuropathy after the first or second round. That stuck around for quite a while. That was more annoying than anything. I’ve always had this sensitivity with my hands where they’ll get too dry, and I need to lotion them up.
With the neuropathy, the numbness was impacting my ability to notice the dryness. Frequently, I would be putting on lotion just because of the sensation that it gave me. I wasn’t able to do some of the fine motor skills I should be able to because of that.
After getting out of treatment every cycle, there were a couple of days were I just was not feeling well at all. Every day progressively got better. It wasn’t while I was there getting the treatment necessarily. The following days were worse.
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.
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.
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 travelling 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.
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. So, 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 four boys and then I have a younger sister. Everybody wanted to help. My mom pretty much moved in with us for five 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.
3. Support & Life Outside Treatment
Did you work through treatment?
As I was able, I went back. When I went in for treatment, I would go in a week at a time for each cycle. Typically, the following week, I would spend several days recovering. The third week, I would always go back to work.
I work in education, and that’s tough because kids are germy. Schools are germy, and I needed to not be in schools. Luckily, I have an office that’s not located in a school, so when I went back to work, I would be at work but not necessarily in schools.
My employer was awesome in being understanding. I contributed how I was able. I actually did a couple of conference calls when I was sitting in the hospital with the chemo being infused. I tried to stay as involved as I could, and that was a good distraction.
I have the luxury of being in an occupation where I get to give back and help other people, and it helped me in the process to still be engaged in that.
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 any moments where 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 eight or nine 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.
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.
What was it like raising kids while going through treatment?
I was honest and open with them about it, but we handled it in such a way that let them know we didn’t want them to worry about it. We made sure that life went on. They still went to school every day. We got them into before and after care. On the weekends, if I wasn’t feeling well, my mom would take them out and keep them busy.
My son was going through his first holy communion prep while I was going through treatment. Toward the end of my treatment, he had his first holy communion. That whole process continued. We just made sure that their lives weren’t interrupted and that they had the opportunity to spend time with me.
How did your cancer affect your relationship with your wife?
It brought us together in many ways. When you have three 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.
She supported me, 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.
Can you describe your “new normal” following cancer?
I finished my sixth round. It had the biggest impact and was the hardest to recover from. After the fact, it took a while for my hair to grow back, but other than that, I went back to work pretty quick and got back into some of my old routines.
My new normal is a little paranoid any time I have an ache or pain or something come up because I worry that it’s cancer. I’m a little more paranoid than I used to be. Going through the process, my wife and I were trying to figure out anything that could’ve potentially caused the cancer.
Was it the weed killer we used on the yard? Was it the type of pans we were using? Now we’re super particular about anything that has any potential cancer-causing agents and are always being watchful of that.
Do you have any advice for someone who might be 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.
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.
Thank you for sharing your story with us, Patrick!