Lani’s Stage 2 Classical Hodgkin’s Lymphoma Story

Lani was just 21 years old when she was diagnosed with stage 2 Hodgkin’s lymphoma. She describes undergoing ABVD chemo, being a self-advocate as a patient, and the support that meant most to her.

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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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My aunt tore down the hallway and found the doctor. He said, “We’re just going to scan everything.”

Afterwards, he came in and said I had appendicitis, but it cured itself. I didn’t know that was a thing that could happen. He said if it was 5 years ago, they would’ve taken it out, but they wouldn’t.

He said, “Hold on, wait, there’s something else.” I’ll never forget this.

He said, ‘We found a mass in your chest.’
I asked, ‘You mean like a tumor? Can I see it?’
He hesitated and showed me, and it was huge.

After that, he was like, ‘Okay, I’m going to call the oncologist now.’
I said, ‘You mean cancer? Okay.’

It was the strangest thing because I didn’t even know that I knew what that word meant.

My tumor was about the size of an egg. It was growing into my heart. For a few months before that, I had been experiencing what I had thought was insane anxiety. I could constantly feel my heart pounding, so when he said that, it made sense.

He told me my lymphoma couldn’t be touched surgically because it’s very easy to break off and can spread somewhere else. That was the reasoning behind the decision to do chemo. For that, I ended up moving in with my aunt to go get treatment near her.

Treatment

How did you approach fertility preservation?

My oncologist in Ohio brought it up. At one point, she asked, “How badly do you want to have kids?”

I jokingly said, “I’m 21, not in a serious relationship, and not financially stable, so not at all.”

She told me I needed to decide because there was a chance chemo could mess up my reproductive organs.

I had 48 hours essentially to decide how badly I wanted to have kids in the future, and ultimately, I decided I did. I went through with fertility treatments, and that was an intense process.

Plus, as women, we’re often told what to do with our bodies. Just as much as people have a right to not have kids, I felt like I had every right to do anything I could to make sure I could if I wanted to.

»MORE: Fertility preservation and cancer treatment

Describe the ABVD chemotherapy regimen

I had chemo every other week from January 2nd to April 10th. They were long infusions. I did ABVD chemo. I would get there at 8 a.m. and end at 1:30 p.m. or so.

Using a port

I had a port, so before I went to the hospital, I would put some Lidocaine cream on it. They would access it with a needle that looked something like Captain Hook’s hook. I learned the hard way that you should always apply Lidocaine first.

Chemo prep

They would hook me up and start anti-nausea drugs. They ran tests to make sure my immune system was okay. After they approved me and all that good stuff, I would usually eat lunch because I knew I wouldn’t be eating much for the next few days after chemo.

I went through some chemo foods. I ate tuna sandwiches, pizza, or a grilled cheese and tomato soup. I had to stop each one after a while, but I’m happy to say I’ve been able to reintroduce all of them.

ABVD chemo side effects

Summary: nausea, neuropathy, hair loss pain

My biggest side effects were nausea and neuropathy. I had such bad nausea. I wasn’t eating much, so it was mostly gagging.

The neuropathy was bad, too. I couldn’t even hold a fork because I couldn’t feel it in my hand. It was hard to walk because I had it in my knees, too. I had to ask my uncle or my dad to squeeze my hand so I could feel my hand.

Those were the worst two, besides losing all my hair. That was not a good time at all. It also hurts, by the way.

No one tells you that, but it really does. I shaved all my hair when it started to fall out, and it was actually a relief.

How did you deal with the side effects of chemo?

When I first started, it was decided that I would get an emotional support animal when I went back to college. Getting a cat was always the light at the end of the tunnel.

I was constantly feeling great and then terrible. It was really hard because I could feel fine and then like crap and back to fine multiple times a day.

I was insanely reliant on other people to get around because I was living with my aunt. I didn’t have a car. For the most part, I was isolated from most of my friends and the community I had built in college. 

I only had one or two friends in Columbus, and obviously they have their own lives. I just felt very isolated a lot of the time during chemo. Hanging out with my family helped.

Seeing friends when I could was great. I talked on the phone with friends. I scrolled through social media just to stay updated on their lives. Some friends came and visited me. That was really nice. 

It’s funny because I look back and think, “What did I do with my time?” I know I did things, but it just all blurs together now in my memory.

That particular time in my life was all about just getting to the next day.

How did you find out you had no evidence of disease?

I ended up having to go back to Philly right after my treatment was over to take summer classes in order to stay in school and not have to start paying my student loans back. That’s a whole other story. It was ridiculous. 

I went to my oncologist in Philly, and I found out there. I did the standard CT scan and all that. I found out that I was clear the day before my birthday. That was amazing. 

Reflections

The emotional impact of hair loss

When I was diagnosed, I dyed my hair rainbow because I was going to lose my hair anyway. It was empowering. I was very attached to my hair and my eyelashes. I think they’re two of my nicer features. I associated my femininity with my hair, so that was hard. 

Be your own advocate

My tumor could’ve been found sooner than it was had I been taken seriously. If someone is complaining about something, you need to take them seriously.

If you yourself are noticing something wrong with your body, say something and push until you feel satisfied with your answer. 

I thought and was told I was just having panic attacks and anxiety, but I had cancer. Don’t give yourself a hard time if you’re having a hard time advocating for yourself. 

Know who your support system. I have quite a bit of PTSD when I have to go to the ER or an appointment.

Self-advocacy doesn’t always mean you have to walk in with your head high and demand what you want.

It can mean you’re strong enough to know you need to depend on someone else.

»MORE: How to be a self-advocate as a patient

How has your cancer changed your perspective?

The thing is, when you go into remission, everyone says, “Yay, great, you made it! It’s done!”

That’s not true at all. That’s when you really start to deal with it. For the first time, you have the mental capacity to realize what just happened to you.

People have a tendency to say, “You have so much life ahead of you,” but you actually don’t know that for sure. It’s not to be pessimistic, but you truly don’t know that.

You don’t have all the time in the world, and you don’t know just how much you have, so I take advantage of the time I do have. 

I’m working a job I love now. I haven’t set my dreams of being an actor on the back burner, but I’ve given myself space to prioritize being happy over being successful. I love where I live. I’m making new friends. I’m close to family.

I’m in a position where some of my friends have lost a parent, and some of my friends have gone through cancer, but none of my friends have gone through both of those things.

The fact of the matter is that I have spent my entire 20s dealing with a trauma. It’s a lonely position to be in because nobody understands all of those things. The only way I know how to deal with that is making sure the people in my life know they are a priority.

New ways to express your feelings

My writing, videos and Instagram posts are very healing. Journaling is a big one. I embroider a lot. Working out and things like that help get some of the energy out, but I don’t know that I’ve figured out yet how to feel connected within those things, though.

How important was it for you to have a support system?

I would not be here without them. If I didn’t have a community backing me, I don’t know what I would’ve done.

I was not in a position to take care of myself. I was in a weird place in my life anyways, so it made it all that much harder. 

I also think it was helpful when people would agree with me when I felt like things sucked.

One of the best gifts my friend gave me was every time I would say something negative, she would just agree with me and say, ‘Yeah, you’re right. That’s awful.’

What advice do you have for someone who has just been diagnosed?

It’s going to affect you in some ways for the rest of your life, but it won’t always affect your everyday life like it once did.

It seems like it never going to end, but it will. It’s going to take a while to get things figured out once you’re on the other side of it, but you’ll be okay. 

When you get done with treatment, people are going to say to you, “You beat cancer. You can do anything.”

What I want to say to you is, “You can do everything, but not because you beat cancer. You can do it because you are a human being, and you have license over your life.”

Cancer has absolutely nothing to do with your power. 

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Classical Hodgkin’s Lymphoma Stories