Josh’s Stage 4B Hodgkin’s Lymphoma Story

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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Pre-Diagnosis

1st symptoms of Hodgkin’s lymphoma

On St. Patrick’s Day of last year, I woke up. I felt like I had a fever. I felt out of it. I didn’t feel very good. I felt just blah. I’ve had them plenty of times. Honestly, I thought I had COVID for a little bit. 

I went to work, and then I took some medicine. A few hours later, I didn’t feel any better. Around that time, my wife — girlfriend at the time, my wife now — touched my shoulder and where I had my lymph node at, and she said, “What is that?” 

I said, “I have no idea.” Obviously, I didn’t really think anything of it. It didn’t hurt. It didn’t cause any pain. But little did I know, my body was fighting something. 

Night sweats were ridiculous. I was sweating through my shirt in the middle of the night, waking up drenched. The sheets were drenched. I had fevers that would top out at 100.4. Wouldn’t get any hotter than that, and then it would just move on. 

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

How long did you have the swollen lymph node?

I would say it was probably close to a month. It sounds crazy now thinking about it, but I just didn’t think it was anything. I really didn’t. I only didn’t think that because it didn’t hurt. The symptoms of lymphoma were so subtle, and they weren’t very telling. 

I mean, I [have] sweat at night my whole life. I just get hot at night. I didn’t think anything of it. My dog sleeps right next to me. He’s like a furnace. So I just thought it was nothing out of the ordinary. I just thought it was stress. 

Then days leading up to finding out, I started to feel pretty good. I didn’t think anything of it. I just started sleeping better. I tried to take care of myself better.

I had a lymph node pushing on my trachea. Any time I did exertion of any sort, I would have to take a step back. I honestly thought I was developing asthma or something. I [was] just making excuses after excuses.

I would have to catch my [breath]. I thought, “Something’s just not right.”

How did you react to the diagnosis?

When I was fully diagnosed, I had an inclination that this was a possibility. I wasn’t shocked. When I first was told, my first questions were, “I have cancer?” That was it. I didn’t think anything of it other than, “Holy hell.” 

Then I saw my girlfriend. She put her head in her hands [and] started crying. I thought to myself, “That can’t happen again.” I tried to be strong and make sure that she never felt like that. 

It’s a crazy story because my nurse — my sister was my nurse, too. When she got in the room, I knew something was up. There was no reason why she would walk into the room with the ER doctor and have that look on her face. It spoke a thousand words. 

Have you processed your cancer journey now?

I would definitely say the process is still going on. [I’m] just thinking, “Man, I had cancer. That’s crazy.” I’m a pretty even-keeled, happy-go-lucky person. 

I make jokes about what I went through. People call me bald. I don’t really care. I’m just that type of person.

I’m not a cancer or oncology patient first. I’m Josh. That’s who I am. I just went through a really tough thing. 

Treatment

What was your treatment plan?

The PET scan just determined I was stage 4. It was everywhere, really. My chest, my stomach, my neck, my liver, my spleen. It was in my bone marrow. It was in a lot of places, so I had to start pretty quickly after they got the PET scan results.

I [wasn’t] able to freeze my sperm. That was something they really wanted to do because chemo really destroys your sperm. I didn’t even have time to do that. I got the results on a Tuesday, and Thursday I was in chemo. 

1st chemotherapy treatment

The first treatment was phenomenal. That was kind of like the telltale sign that things were going to look up. They tested my blood every single time I went, and they made sure I came back the next day just to make sure I didn’t develop anything else.

[I] went to check my iron levels and all that stuff because I was white as a ghost when I left the first treatment because it destroyed me. I had a good feeling that everything was going to work out pretty early because I saw my blood balancing out. 

There are LDH tests that show how chemo is working. It was so incredibly high, and then it was basically cut in half after the first two treatments. I was very fortunate to have very quick results fast, and it helped me power through for the rest of the time.

What helped with the side effects?

I was actually given Claritin to help with bone pain. When I tell people that, they look at me like I have three heads. ‘Allergy medicine helps with bone pain?’ Yeah, it does. I have no idea why, and I don’t think anyone really questions it.

Medical marijuana in my state is legal, and I used that a lot to help with some of the pain and nausea. It would help me eat. I did drop a lot of weight, around 30 or 40 pounds. At least I’d just nibble on some stuff [and] drink some water. 

I was fortunate enough that I had a lot of pain meds [and] nausea meds. From chemotherapy, I don’t think I ever puked. I think it was maybe self-induced maybe. Constipation would be the worst thing I can really remember I went through. 

The only thing I wanted to do is get better.

Needing support

Getting around was very easy. I have a group of friends and family that were willing to do anything at the drop of a hat for me.

I don’t really remember much of the days because I was on so many pain medicines and drugs, but I knew I was there. All I kept telling them was, “Just get me there, and I’ll be there.” 

Put a chair there [and] have someone stand next to me just in case. My balance wasn’t always great; it was the neuropathy and all that stuff. So I was like, “Just get me there. That’s all I need you to do, and I’ll figure it out. I always tend to.” That was just the thing I was thinking about.

Finishing cancer treatment

You never know. You [could] become refractory towards it. It could stop working.

It fueled me just to finish this out. Twelve rounds of chemotherapy was awful. It was every two weeks. But I knew at the end of the tunnel, it was going to be worth it

Do you experience scanxiety?

Yeah, for sure. I’m in the process of getting scanned every few months now for the first year, or the next two years and three or five years. 

I have a scan coming up in a month, and my oncologist was telling me, “Hey, don’t live around the scan. Just live your life, do what you need to do, and then figure that out when that day comes because there’s nothing you can do.” 

Even if there was anything, there are still a lot of different tests that you have to go through. Having an oncology appointment is scary no matter when it is and what it’s about. 

»MORE: Patients describe dealing with scanxiety and waiting for results

Feeling confident for the future

I have the best doctors, and if anything was to happen, I know I would be able to beat it again. I feel very confident and I would feel even better if nothing ever happened. I would be even more ecstatic. 

You can’t help it. I couldn’t stop myself from getting cancer. I don’t know if I can stop myself from getting it again, but I put my foot forward and do what I’m asked.

Not pushing yourself to progress faster

I’m not a very pushy person. I think if I was younger, I would for sure think, “Wow, I’m missing out on so many things. I need to make this a fast track. This is just annoying and bogus.” 

I’ve tried to stay calm and allow the process to play out. I’m not going anywhere, so I don’t have to really push myself. I don’t have to prove anything to anybody because what I just went through is enough in my eyes. 

When I get tired, I lay down. I don’t care. I’m not going to push myself. I want to relax. I felt like one of the things I took seriously is listening to myself. You have no reason to push yourself because you’ve already pushed yourself to the limits.

Chemo Brain

What is chemo brain?

Chemo brain is for sure a thing. It’s cloudiness. One of the very first moments I remember having chemo brain, my buddy was over with his girlfriend. 

We were eating dinner. We were talking, and I looked right at him and couldn’t think of his name. And I’ve said his name a million times, and it’s like, “I know who you are, but I just can’t say your name.” 

The fogginess of chemo brain and being able to remember things and process things a lot slower than people. Trying to think of the right word to say, too. 

Thinking of what to say quickly and respond quickly is difficult sometimes. It’s definitely something that you have to deal with. 

When you’re going through treatment, you kind of have to play those mind games. You have to do word puzzles to get your mind going. You can’t stay stagnant because you’re just going to kind of rot. 

I was always told [to] do crossword puzzles or write things down. It makes you so cloudy and foggy, and you just forget things very quickly. I have my wife just remember, like, “Hey, what did I do? What did I say?” 

What did you think of chemo brain before you experienced it?

My initial thoughts were more of it might be a fogginess, maybe a little forgetfulness. I never thought I would forget my best friend’s name. That wasn’t something I would think about. 

I thought I would just be cloudy or not be able to remember certain things. It’s still a thing. 

When you’re going through [cancer treatment], make sure someone’s with you, write things down or even record it. You can always go back to it because you can’t alter a recording if you have it all written or recorded. You might forget things.

Chemo brain is a really huge thing. I think it’s not really spoken about or talked about, because going through treatment, yeah, it is a thing, but when you’re out of it… I’ve been [done] three months, and it’s still a little difficult trying to comprehend everything that’s thrown at me. 

Emotional effects of chemo brain

It makes you emotional and makes you upset. It makes you mean; it makes you happy. It just messes with everything, so your feelings are just out of whack. Having someone around to kind of validate and try to settle you down helps, for sure. 

Chemo brain doesn’t only affect your comprehension, but it also messes with your emotions. You could be running hot one day. You could be really sad one day. You can be really happy one day. 

So just having someone around you be like, “Okay, the situation isn’t as bad as you think it is right now.” Just relax, take a deep breath, and allow the process to kind of play itself out. 

If there’s anything happening, you hit up your oncologist or your nurse practitioner or whoever you need to. Reach out to them immediately if you find something wrong because your brain plays games with you when you’re going through this. 

Every pain, every bump, every bruise, you’re like, “What is this? What is that?” The brain plays games on you. I know it’s hard for people to have 24/7. I was fortunate my wife worked from home, and she took care of me every day. 

Every second she sacrificed, and she definitely helped me navigate through that mental part of everything. Have someone around you at all times. It really helps you.

You don’t want to say, “Oh, I have cancer, so you have to do this for me.” It’s way bigger than you. People want to help you, so allow people in. 

In the beginning, I was a little wary because I didn’t want to disappoint anybody. I didn’t want my parents to see me bald. I didn’t want them to see me 40 pounds lighter than I was. I didn’t want them to see how tired I am. 

But at the end of the day, they want to help me. They’re my parents, or they’re my friends or family. Letting people in is something that you should allow people to do because you can’t do this by yourself. It’s unfair to you and to them. 

Reframing treatment timeline

There’s nothing in this world that will prepare you for this, but take every day at a time. One day at a time. And I think that really helped me towards the end because you’re thinking, “Man, I got 60 days left in treatment. This sucks.” 

It’s an unstoppable number to even think about. You have to go through 60 more days. So another thing I would think about is just think about one treatment at a time. Like, “Okay, I got five days until my next treatment. Four days until my next treatment.” 

That’s one more down, and then the clock resets. I would get my Neulasta shot a day after chemo. It had to be 24 hours after, and my wife would be like, “All right, 13 days till you got to see these guys again.” 

Just like that. You got 13 days to recuperate and kind of stay on your P’s and Q’s and stay hydrated. Don’t think of it as 60 days. Just take it one treatment at a time, one day at a time.

One thing I’ve really realized [is] it’s hard for people to even talk about that haven’t gone through this. It’s like you can’t relate. You can’t get to their level. They won’t get to your level. 

You go through this thing during chemo. You turn into a different person. You’re not happy. You’re not joyful. You’re kind of mean. You’re kind of an SOB. It is what it is, and you’re just trying to find an outlet.  

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