Lani’s Hodgkin’s Lymphoma Story: Classical, Stage 2
What were the first signs something was wrong?
It was right around Thanksgiving. I was staying with my aunt. We went to a pub, and I had to go to the bathroom. It was really urgent.
I vomited profusely and had diarrhea. I blacked out. I asked the girl in the stall next to me to go find my aunt.
She came in, took one look at me, and what I had produced, and she said, “We’re going to the ER.” I was having some serious stomach pain.
What happened at the ER
We went across the street to the hospital. They were testing for everything. They finally decided to do a CT scan. I had to drink the contrast, and that takes a while to process.
In the meantime, they gave me pain medicine. Out of nowhere, after starting to feel a little better, I started to have insane back pain. It was so strange.
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 five 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.
How did you process the cancer diagnosis
At first, I didn’t know how to react. The oncologist ended up being my diagnosing doctor. It was like two in the morning, and I wasn’t having pain there, so it was weird.
Breaking the news to loved ones
I remember wanting to call my parents and tell them. Nobody quite understood everything right away or how it could even be happening.
A few of my family members are in the medical field, and when they saw my scans, it kind of became more real.
I don’t think I slept more than 45 minutes a night for those four nights while I waited for the oncologist appointment. I was a nervous wreck. I needed to talk about it. I didn’t sit still.
What happened at the oncologist appointment
He had asked the ER to do some blood work during my first night at the hospital. When I got in with him, he stayed for two hours after hours to talk with me.
He wrote out a diagram of what the treatment plans would be if it was or wasn’t cancer. Obviously, it turned out to be cancer.
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.
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.
It was really hard to decide that right then. Having kids has always been something I assumed I would do, but in the future.
It was like, ‘You’re dying. By the way, do you want to have kids?’
It was very daunting.
Describe the fertility preservation process
Fertility treatments themselves were rough. I had to go to the doctor constantly. I had to give myself four different shots on the hour every day.
Honestly, the biggest thing the decision came down to was that the idea of not having kids made me really sad.
The fact that the decision would be there to use the eggs if I wanted them was nice because if I didn’t want to use them, I didn’t have to. It’s nice to know I have them though.
I lost so much control of my life when I was diagnosed, so I wanted all the options I could have. I wanted to be able to take control of that.
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.
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 8am and end at 1:30pm 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.
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 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.
On days I felt well enough, my dad and I would go shopping for that. I have a cat now. Her name is Aurora Borealis. I had everything for her before she even existed.
I made a lot of ribbons. That became my hobby. I watched a lot of TV. I don’t really know. My dad would come to hang out with me.
We went to a lot of movies together. That was really awesome. In hindsight, now that my dad has passed away, I’m so grateful for that time I got to spend with him.
All of this was only a year-and-a-half or so before he passed away, which was unexpected, so it’s really nice to know that I got to spend those days with him.
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.
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.
It was a fad for women to be shaving their head at the time, as well.
That was hard for me because people would say, ‘It’s not even a big deal because it’s so in right now. You look great!’
I was like, “You understand I’m not doing this just to do it, right? I’m doing it because I’m sick, and it’s falling out.’
It’s only been recently that I’ve started to look in the mirror and recognize myself. It’s difficult when you’re going through something like this, and you don’t recognize yourself, but other people are telling you that you still look like you. They mean well, but it’s just hard.
I bought a wig. Generally, when I was feeling good, I chose to wear that one the most. It was the only time I felt beautiful.
That was really important. You don’t realize how great it is to have hair until you don’t have it.
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.
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.
My priorities flipped on themselves. My whole life, I had been working towards this one goal to move to New York and be an actor. That shifted a bit.
Another thing is when you beat cancer, all of a sudden, everyone is telling you that you can do anything. I felt really guilty knowing that part of me didn’t want the same things anymore.
The whole experience has made me a little more cautious. I love a good plan because I really don’t like the unknown. I have butt heads with people a few times because I like to know what’s happening before it happens. It’s not that I can’t go with the flow, but I have a harder time.
It’s made me anxious when I think I might have to go to the doctor. I value my family and my friends literally above anything else. I want people in my life to know I love them.
I tell them I love them any chance I get.
Having them around, having stability and predictability became very important to me. Particularly because my dad just passed away, I think those desires have been reinforced.
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 20’s 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.
If I didn’t have those people who were willing to step up for me, I don’t know where I would be.
What were some ways people showed their support?
A big thing for me was talking about and doing normal things. A friend of mine watched the Academy Awards with me, and that was so much fun. It was nice to feel normal.
One time, I went to visit friends from college. I played games with my family. People would tell me about their day, and that felt so good because it was just a normal conversation.
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.’
People deserve to be allowed to acknowledge when something is awful and bothering them. People in my life were willing to give me space to do that, without telling me to look at something else about it that was more positive really helped me. It gave me a space to feel bad about things I was really unhappy about.
My friends who were willing to help me adapt back into normal life after I went into remission were amazing. I know it wasn’t easy on them.
My aunt and uncle started a GoFundMe for me when I went back to school. That was so nice. People were so amazing. My friends threw me a Fuck Cancer party when I was diagnosed.
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 your 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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Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Lauren C., Hodgkin's, Stage 2A
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Wade W., Hodgkin's, Stage 2A
Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)
Moe C., Hodgkin's, 2B, Relapse
Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Fabiola L., Hodgkin's, Stage 2BX
Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Stephanie O., Hodgkin's, Stage 2B
Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)
Kayla T., Hodgkin's, Stage 3A
Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant
Nicole M., Hodgkin's, Stage 4
Cancer details: Staged 2 then 4 after second opinion
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Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)
CC W., Hodgkin's, Stage 4
Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)