Madi’s Stage 1B Nodular Sclerosis Hodgkin’s Lymphoma Story

Madi was diagnosed with stage 1B Hodgkin’s lymphoma at just 24 years old. Explore her story on how she used self-advocacy to get diagnosed and underwent ABVD chemo to get into remission.

Madi also shares how she navigated the hair loss, the support that meant the most, and the impact of cancer on her relationship.

If you don’t feel inspired or led to be the ‘inspiring cancer warrior,’ then don’t. Not everyone feels like it.

People always say, ‘Use your story for good!’ Well, yeah, but only if you feel like it.

There’s so much pressure on cancer patients to be strong through treatment and use their story for some greater purpose. I don’t think you need to feel pressured into that. Do what you feel is right.

Madi J.

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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 1st symptoms?

I really just couldn’t breathe. That was the only symptom I really had. I was going to the gym 5 or 6 days out of the week.

I was biking 10 miles a day, and all of a sudden, I was calling my mom after my workouts. I was super fit, so I was telling her it was getting harder, and it was weird. She said I was probably just working out too hard. 

I took it a little easier and it wasn’t getting any better. Then it got to the point where it was just sporadic. I would be driving in the car, and I’d feel like an elephant was sitting on my chest. 

First doctor’s appointment, tests and scans

I went to my doctor, and they did pulmonary function tests, EKGs, EEGs and every test under the sun to see what was going on. Then they did a CT scan, and that’s when they saw a little mass in the center of my chest. 

I started going to the doctor on August 8th, and I wasn’t diagnosed until October 1st. The placement of the tumor was really weird. It was on my phrenic nerve. It was in my mediastinum.

It was right in between my heart and my lungs, so they kept sending me to specialist after specialist to see what it was without actually going in and biopsying it.

How did you get news of the mass?

At first, they said, “Well, it’s probably just anxiety.” Then they did the pulmonary functions test. My O2 stats were all really abnormal.

They sent me to a cardiologist, who told me everything was fine with my heart. From there, they checked for blood clots. Then the CT found the mass.

Describe the moment you got the cancer diagnosis

He came in after the surgery, and he was holding my hand. He said, “We were able to take the tumor and some surrounding lymph nodes. We got your pathology back. Preliminary results show that it’s Hodgkin’s lymphoma.”

I didn’t know what was going on or what that meant since I was so groggy. My mom was just crying, and I was out of it. 

He came in the next day and explained everything. I think I was in denial because so many different doctors had told me it was nothing to worry about. I tried to argue with him and told him his preliminary results were incorrect.

I said, ‘Unless you know without a shadow of a doubt that I am walking out of here as a cancer patient, I don’t want to hear it.’

On October 1st, he called me and said I definitely needed to see an oncologist as soon as possible. He was going to get me set up with one there.

He said, “Good news, it hasn’t spread to any of the surrounding tissue we took, so I’m pretty sure that means you’ll be staged pretty low.”

How did you process the Hodgkin’s lymphoma diagnosis?

I was just kind of in shock. I was confused. We had a cruise scheduled on October 8th. That helped me keep my mind off of it. I got to go on that vacation, not be on chemo, and not really have to think about it yet. 

I don’t know when the reality of it all set in. It wasn’t right away. When I talked to my mom, I was like, “Okay. This is going to be something new. We’re just going to have to figure it out.” 

I had lost my grandmother to cancer a few years prior, so I knew we had to do whatever it took. I hadn’t had time to research any survival rates or anything. I wanted to go into the first appointment without any fear that the internet put in my head and just do what she said. 

The only thing I really researched beforehand was freezing eggs. With me being so young, I asked her what I needed to do there. That was really the only thing I looked up before going in.

»MORE: Patients share how they processed a cancer diagnosis

Describe the first oncologist appointment

It went well. She kept pausing as she was explaining things and looking at me. I was like, “Keep going,” and she said, “Well, it’s just that this is normally when people start crying.”

I said, “No, the reality has come and gone. I’m not going to cry about it.” She said we were super understanding, and she was super appreciative of our openness about everything. 

How did you approach the issue of fertility preservation?

As far as freezing eggs, she said that wasn’t necessary since I was 1B and only needed 3 rounds of chemo. I had a total of 6 infusions.

She said, “Since you have an IUD in, we don’t need to freeze eggs. If you just want to, we can, but it’s going to delay treatment.”

I wanted to just get it over with, so we opted out of that. 

She said I should be pretty responsive to the chemo. She told me about the ABVD. She told me I’d do every other Thursday, and as long as my PET scan showed that everything was going the way it should, I wouldn’t have to do radiation. 

»MORE: Fertility preservation and cancer treatment

Also, the needle is so long and has to be thick for the chemo to go through it. It’s just a mess. I would highly recommend the cream and maybe some Xanax before you get it accessed. 

My nerves are so shot still. To this day, I’ll rub the area sometimes. It itches and hurts sometimes. It’s good when you have it, but it sucks getting it and sucks when you get it out.

How long were the infusions?

Infusions were once every other week, and they were outpatient. I just went into the infusion bay. It probably took 6 hours, give or take.

Describe the ABVD side effect cycles

The “red devil” was push chemo. That typically went by pretty fast. That one didn’t do a whole lot to me during the infusions. I only had 2 infusions of the bleomycin because it was destroying my lung function so bad. They had to cut it out.

Once I got to the vinblastine, I was just so exhausted. I pretty much slept through that and had the dacarbazine. That was light sensitive, and it was wintertime thankfully. Any time I would go out in the sun, it was so sensitive. I had to wear long sleeves and hats. 

It was rough. I had to take a bunch of different medicines, and my body had to get used to it. I had 14-day cycles. The first 5 days, I pretty much just slept. Those were absolutely the worst times of my life.

The next 5 days were okay. I could get up and take a shower or make myself something to eat. I couldn’t usually get out of the house, but I could get out of bed. I’d have a little bit of an appetite. 

The last few days before my infusion, I had a little bit more energy. If I had to get out and do anything, I could.

I would respond to text messages that people had sent in the previous 10 days because I finally felt good enough to give a genuine response. 

What were the other ABVD chemo side effects?

The nausea was really intense. The doctor gave me 3 different anti-nausea medicines. I would take those pretty religiously post-chemo (infusion) as a precaution.

Have someone that makes you eat and drink something. I don’t know how I would’ve made it through chemo without a support system.

If I didn’t have someone who came home to check on me and say, ‘Hey, this is the same bottle of water I put next to you before I left,’ I don’t know what I would’ve done.

I didn’t really have an appetite at all. Everything tasted terrible. That was a really big side effect.

There was also really bad fatigue. I have 2 big dogs. One is almost 100 pounds, and the other is 52 pounds. I couldn’t walk them or take them to the dog park. I had muscle weakness, too. I had to call my mom or my fiancé to come over on their lunch break and come do it because I couldn’t.

»MORE: Read our comprehensive ABVD chemotherapy info page

Mental impacts of chemo

I never got put on antidepressants during chemo because I’d been on them before, and I just never like the way they made me feel. I told my doctor I didn’t want to be put on them.

I said, “I’ll take something for acute anxiety or panic attacks during this, but do not put me on something long-term.” 

I experienced isolation, loneliness and all that. It definitely took a toll on me mentally, but that’s what having a support system is for.

Throughout the holidays, I’m that person that annoys you with their excitement. We always have Friendsgiving. We squeezed 20 people in our apartment.

Remission

News of “no evidence of disease” (NED)

January 9th is when I had my PET scan. January 10th is the day they told me I was all clear. I was excited, relieved, anxious, and I was like, “Okay. It’s done. How do I progress?”

Everyone preaches to you about the new normal. I don’t do well with change. My entire life had just been flipped upside down, and now I was needing to create a new normal for myself? 

There was also anxiety because I would be seeing my doctor less. I didn’t want my team to be out of the loop. 

Has cancer changed your life perspectives?

Yes and no. It’s definitely made me more thankful for the present. It has made me seek out opportunities more, especially things I would’ve been hesitant about before. It’s given me a push. 

My new normal is not settling anymore. If I’m unhappy with something, I no longer reason with myself about why I should just stick it out.

If I’m not happy with something, there’s no reason to continue being unhappy.

I recently quit my job. I was miserable. I hated it. They were not understanding at all when I was finishing treatment.

They expected me back to work and ready to go the Monday after I finished treatment. They treated me like I had been on vacation for 3 months. I toughed it out for several months. I felt like I owed it to them.

I finally came to the realization that I don’t actually owe them a thing. I worked my butt off for them for 2 years before I was diagnosed and gave it my all. They maintained my job through treatment because I was a good employee.

My new normal includes a lot of self-love and appreciation.

There was extreme weight loss and gain. It didn’t all come back the way I lost it. My hair fell out and grew back. 

I’ve learned that people who are worth being around care about what’s on the inside and what you have to say. Before I got diagnosed, I didn’t tell anyone what was going on except my parents and my fiancé’s parents. I didn’t want all the pity. Now, I don’t really care.

If someone wants to give me false pity or post something on Facebook to make them look better to their followers, whatever.

At least they’re sharing the fact that someone they know is going through cancer, and maybe someone will see it and reach out because they’re going through something similar.

Is there anything you wish you’d known at the beginning of all this?

I wish someone would’ve told me to document it.

It sounds weird, but I wish I would’ve known to be more appreciative of what I was going through, so I could use it.

My mom always tried to take pictures when I was at appointment, and I was always so mean. I did not feel like taking pictures. Looking back on it, I wish I had those memories so I could look back on it and reflect.

No one told me to journal. I wish I had done it, though, because it would’ve been useful.

I thought, ‘People only want to come see me so they can take a picture with the cancer girl and post it on social media.’

That’s not always true. It might be sometimes, but I wish I hadn’t thought that way.

She was brushing it, and this sad feeling came over me. I didn’t turn around. I didn’t look. She took the trash can outside of the room when she was done and asked them to take the bag out because she didn’t want me to see it. She called my hairdresser and scheduled an appointment for her to come to my apartment the day I went home. 

I could tell it was a lot thinner when I left the hospital, but she cut it so short that it felt like I still have a lot of hair. From there, it just fell out in bigger and bigger clumps. I couldn’t tell what was dog hairs or my hairs. I would wake up every morning with hair on my pillow, and that was emotional.

Did you shave it?

I never shaved it. I cut it to about an inch. I had a love/hate relationship with my wig. When I went wig shopping, I hated everything. It wasn’t my hair, and I didn’t like it.

I didn’t want to shave my hair because even though it was short, I still had some. I was holding out hope that it would just thin out and not all fall out.

It all fell out, though. It thinned the whole time, but the worst was right after the last infusion. That’s when my eyebrows and eyelashes fell out. It kept falling out after I was in remission for about 2 months. 

When it started growing back, everything grew back so thick. I’ve never had to shave my armpits so much in my life.

»MORE: Dealing with hair loss during cancer treatment

How did the hair loss affect you emotionally?

I lost all control of my life at that point. Your hair is one thing you can control.

You can get up and style it in the morning. It kinda sets the tone for the day. You can curl it, put it in a bun, or whatever you want. It kinda goes along with “look good; feel good.”

When I started losing my hair, I felt like there was nothing left that I could do to not look sick. Losing my hair made the reality set in.

Of course, the infusions sucked, but I tricked myself into just acting like they were a bad course of antibiotics. It was fine. I could get over it.

When all the hair started falling out, I told myself, “Okay, this is not strep, Madison. This is your life.” It was the last straw for me. 

A lot of people say shaving it is empowering and helps take some of that control back, but I didn’t want to shave it.

What helped you during those moments?

Knowing that I only had a total of 6 infusions. Seeing the light at the end of the tunnel and being able to stay positive was crucial.

It also helped to have people understand that I didn’t want pity. I used a lot of dark humor to get through it, and people who understood that and joined in helped keep my spirits up.

Joking around gave me a sense of normalcy. There were little positive moments sprinkled through everything. That helped.

One of my friends knew I couldn’t be around sick people or people who had been around sick people, but she wanted to help, so she dropped a care package off on my porch. It had coloring books, a blanket and some other fun stuff. She left it outside my door, and she didn’t even tell me it was there.

My little brother went outside later and said, “Uh, I think there’s something here for you.” He came over to me carrying this big basket of stuff. Little things like that were so nice.

What’s your advice for people who want to help but don’t know how?

Just be there. I was terrible about texting back because I felt so crappy all the time. If they don’t text you back, don’t take it personally. Text again the next day. Ask if they’re hungry. Tell them you’ll bring food.

My biggest pet peeve is that ominous phrase, ‘Let me know if I can do anything.’

That is the biggest cop out ever. Initiate something. Make a plan. Say, ‘Hey, I’m out and about. What can I bring you?’

I was so sick that I couldn’t walk my dogs. If someone had texted me and said, “Hey, do you mind if I come walk your dogs for a bit,” that would’ve been so helpful. 

Be there. Have a real conversation with whoever is going through it and find out what their idea of “being there” looks like. Everyone is different. Some people need a lot of constant reassurance. Some people just want to be left alone and just know that if they need you, you’ll be there. 

I wanted genuine people who were actually there if I needed them. The generic “let me know if I can do anything” people drove me crazy. That’s the emptiest statement ever.

It’s like when someone’s family member dies. If you say that to them, what does that person want to say back? “Let me know if you can do anything? Well, can you bring my loved one back to life?” 

When someone leaves it that far open for you, it’s hard. “Anything” is very broad. You want to pay my medical bills? My rent? There are a lot of things I could say in response to that question, so it makes it really hard.

If you want to help, that’s why I say initiate something specific. Whether the person suffering chooses to accept or not doesn’t really matter. At least they know how much you’re willing to give of your time and energy. It helps to feel genuineness in an offer.

Monetary gifts are great, but time is worth so much more. If you want to come over and watch a show with me, awesome. Be there. Be genuine. That’s my advice.

»MORE:  What kind of support cancer patients say helped the most

Do you have any advice for someone who is nervous to self-advocate?

Have a support system. Have people who are looking out for you. You wouldn’t have gone to the doctor unless something was wrong in the first place. At the end of the day, realize that your health and sanity are your responsibility. You owe it to yourself. 

Don’t psych yourself out. Don’t let anyone convince you that something’s not wrong until there’s proof. You know your body.

Know yourself. Know your body. It’s your life on the line. It’s your well-being that you have to stand up for. Confronting someone about your own body is something that you just have to suck it up and do.

You need to have a support system standing behind you and reassuring you. They need to be able to say, “No, we’ve seen a difference in her from point A to point B. She’s right. Something is off.”

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

Financial toxicity: paying for cancer treatment

I was still on my parents’ insurance. It was at the end of the year, so we had already met our deductible. It’s still expensive, of course, but we only had to pay 10% of everything basically. 

I was also proactive and bought a cancer policy at work the year before getting diagnosed. That offered a lot of assistance, too. They paid a percentage of everything. 

While going through it, the financial stuff wasn’t really on our minds. My parents are stable and were able to help provide for us. Between my fiancé and I, we were able to pay our bills. The cancer policy helped a lot. I was definitely lucky. 

Once the year started over and the deductible wasn’t met, that’s a different story. The PET scan I had was almost $6,000. 

Message for patients

Find your community. There’s a group on Instagram of a bunch of young women called “Chemo Queens.” They’ve all been through some kind of cancer. Somehow, we all just connected.

We’ve grown tremendously over a few months. They are who I can talk to. I was having trouble breathing the other day, so I went to the doctor and had to have a scan. Not everyone truly understands what that’s like. 

Don’t be afraid to talk about things. If you’re having a bad day and want to tell the world, post it. You can get little words of encouragement from people on your Facebook if you need it. It’s okay. Put it out there. People will receive it how they want to. 

Don’t worry so much about running yourself ragged to maintain friendships. If there’s one thing I learned, it’s that you will have so many people be your friend while you’re going through treatment who will not be there after you get your NED report. 

Don’t exhaust yourself. People who want to maintain friendships will understand it’s their turn to put in the work for that time period.

You do the work to keep yourself healthy and feeling good. Use your energy to make sure you’re eating and things like that. If there’s ever a time to put yourself first, it’s after a cancer diagnosis.

If you don’t feel inspired or led to be the “inspiring cancer warrior,” then don’t. Not everyone feels like it.

People always say, “Use your story for good!” Well, yes, but only if you feel like it.

There’s so much pressure on cancer patients to be strong through treatment and use their story for some greater purpose. I don’t think you need to feel pressured into that. Do what you feel is right.

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