Mara’s Stage 2BX Classical Hodgkin’s Lymphoma Story

Mara shares her stage 2BX Hodgkin’s lymphoma story, which includes undergoing ABVD chemo, taking out the bleomycin (AVD), undergoing radiation, and also going through IVF to preserve her fertility options.

• Name: Mara T.
• Age when diagnosed: 21
• Diagnosis:
  • Hodgkin’s lymphoma
  • Stage 2BX (bulky)
• 1st Symptoms:
  • Shortness of breath
  • Back pain
  • Daily migraines
• Tests & Biopsies:
  • Chest CT scan
  • Excisional biopsy
  • Bone marrow biopsy
  • PET scans
  • Pulmonary function test (lungs)
  • Blood work before every treatment
• Treatment:
  • ABVD Chemotherapy Regimen
    • 3 cycles
    • Each cycle = 1 month, biweekly
    • Total: 6 infusions
  • AVD Chemotherapy
    • Dropped bleomycin to preserve lung function after scan showed chemo was helping
    • 3 cycles
  • Radiation
    • 11 days or sessions
• Egg-freezing:
  • Decided not to freeze eggs to avoid one more medical procedure

 

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Just take care of yourself. It’s okay to cry. It’s okay to hate your life. You don’t have to be an influencer. You don’t have to make it an amazing, beautiful thing. If you want to, that’s fine.

I wrote in journals things I was thankful for sometimes, but I also wrote journals about ‘Wow, this week really just took it out of me.’ 

Do what is best for you during this time because you’re literally fighting for your life.

Mara T.

Diagnosis

What were your 1st symptoms?

My whole life I’ve had tiny, little headaches, but no real migraines. Last summer I started getting migraines daily, where it felt like something had popped inside of my head. I’d get lightheaded. 

I was having back pain in my middle of the back when I sat in certain positions and a little bit of shortness of breath. I was always anemic, so my fatigue wasn’t new, but it definitely got worse.

After that, I went to my doctor, and everything was normal with the labs except for one result. I had a lump up here on my shoulder, my clavicle area, so he did a CT. 

Going checked out at the walk-in clinic 

I went to the walk-in clinic on September 1st, the day before my 1-year wedding anniversary. They gave me steroids and an injection of an anti-inflammatory medicine.

That obviously didn’t fix anything, though, considering the migraines were from compression of my superior vena cava by the tumor growing in my chest. 

Going to the doctor’s

The next week, I went to my primary care doctor’s office. His nurse practitioner prescribed some meds to “reset” my body. Her hope was to knock me out for the day and then have me wake up feeling better, almost like turning me off and then turning me back on again.

She also gave me a medicine to take when I felt a migraine coming on. That medicine made me feel like I was having a stroke. I was so confused and out of it.

I went back to the doctor on the 24th, and they ran some blood test that showed that my ESR was high, which is a non-specific marker of inflammation.

When did you find a lump?

My friend and I were studying for nursing school, and she came over. She was like, “I have this lump that comes up on my shoulder that comes up whenever I get stressed out.”

I was like, “Rachel, that’s so gross.” I was teasing her. I reached up and felt mine. I was like, “I do have a lump there.” I texted my mom and asked, “What do I do?”

She said to wait 2 weeks because the lymph nodes swell all the time for no reason, and then you can see the doctor. So I waited the 2 weeks and called him. He saw me pretty quickly — if not that day, then the next day.

He felt it, and his whole face dropped. 

Scheduling a chest CT scan

He went from being the friendly, regular doctor to seeming bummed about it. He knows my family since my family is medical. I don’t know if that made a difference to him, or if it was because I was young and he knew. It still sticks with me that I can see his face. He had to not say anything to let me onto it, but I knew.

I had had a head CT already, but he ordered a chest CT after that because Hodgkin’s presents with that huge mass in your chest usually. And it was there. 

He couldn’t get me in for a CT scan until October 16^th, so the next 11 days were excruciating. 

My head CT was the same day maybe, but the chest CT was so far out. It was nerve-wracking to wait that long, but I was like, “If it’s that big of a deal, it would be done quickly.” 

My husband and I were housesitting a week before that happened. I joked with him. I had been getting those migraines for so long. I was like, “What if this is the last normal weekend to get away?” 

He was like, “Don’t say stuff like that. You’re just being dramatic.”

But it was. 

How did you pass time waiting for tests and results?

The waiting is always the hardest part.

I would not repeat that weekend between knowing and chemo for all the money in the world. I would rather do chemo over and over again than do that weekend of waiting.

My biggest thing was trying to live a normal life because I knew things were going to change. My husband and I went to the zoo, which isn’t an option right now with there being a global pandemic. But we went to the zoo, and I got out of breath. I knew that was from the cancer. 

It was nice to have that memory of normalcy hanging out with my family. I got to be normal for a bit. That was my last bit of real normalcy. On my off-weeks from chemo, I felt okay, but I still wasn’t able to go to the zoo or do normal people things. 

Describe the CT scan

For the CT scan, they start an IV. They can do it with or without contrast; mine was with. They start an IV. They have you lie on a table. You go through a short tunnel — more like a donut than a tunnel. They do the contrast through your IV, doing it slowly so it goes through right at the perfect tunnel.

You’re in and out in like 5 or 10 minutes. It’s super fast and easy.

CT scan contrast dye warning

It makes you feel like you peed on yourself, but I knew that was coming because my techs told me. 

Describe the results call the next day

I was on my way home from nursing school, and my friend was riding with me. I still didn’t think anything was wrong-wrong. I was driving, and I got the call.

I’d been waiting all day. I had to call them for results because they were trying to figure out what to do. 

I got the call and answered it over the car speaker. She was like, “We have a follow-up with an ENT for you.”

I was like, “Oh, okay. What did my scan results say?”

She was like, “Well, actually we found a 7-centimeter mediastinal mass.”

I was like, “Hmm. What does that mean exactly?” 

I started crying while I was driving down the most dangerous road around here. My friend sat there, and he was like, “It’ll probably be fine.” He did not know what to do.

I dropped him off, and I did not speak to him. I went straight home and called my mom, who was on a work call.

I told her they found a lump, and she said, “Oh, that’s not good.” 

Digesting news of the mass

At 7 centimeters, we didn’t really know how big that was. We don’t use the metric system or anything. When my dad got here — we met at my house — I was like, “How big is 7 centimeters?” He was speechless at that point, so he just showed me his fist.

I was like, “Wait, what part of the fist are you talking about? Diagonal? What is happening there?” So we joke about that.  He just kept doing the same thing over and over again. 

Getting an earlier appointment (self-advocacy)

My appointment was supposed to be the next week, but my dad freaked out and pulled some strings. I understand the scheduling restrictions. We had to go very early in the morning. 

I don’t know if it was that pressing of a matter (it doesn’t move that quickly), but it was the waiting that we didn’t want to do because it was so hard to wait.

Describe the ENT visit

Between getting my scan results, I got a paper copy. It said ‘likely lymphoma,’ and that’s when I was like, ‘Oh, this is really happening.’

I had done a lot of research of people who had the similar lymph node, the supraclavicular one, and the mass in my chest. Almost every single person had lymphoma. 

So we know, and we go there. He said, “We can biopsy the one in your shoulder. That’s not a big deal.” I was like, “Do you think it’s Hodgkin lymphoma?” He said he wasn’t sure, but I think he knew. 

He was super casual about everything, like it wasn’t the day of my cancer diagnosis. My appointment was Friday. He scheduled me for the next Tuesday to do my biopsy.

 

What was the biopsy like?

I had a really weird experience. Not everybody does this. I was supposed to get a fine needle aspiration, which is when they ultrasound it and stick it in there to get a tiny little chunk. But I got there, got changed, went to see the surgeon, and I said bye to my parents.

He’s like. “I’ve reviewed your film, and I think I can get a biopsy of your chest. Have you eaten today?”

I was like, “Yeah, I ate. I’m not going to pass out during the test. You didn’t tell me I couldn’t eat because of the fine needle aspiration.” He was like, “Okay, we’ll just heavily numb you.”

So I had chest surgery while wide awake, where they numbed up my chest really well. They stuck some decently sized needles into my chest. I still have 1 or 2 scars from it.

It didn’t hurt at all. I just felt pressure sometimes.

Whenever they took a sample, it punched, because it was a punch biopsy. He went in 1 time and got 5 or 6 samples, because it’s hard to diagnose Hodgkin’s without a full excisional biopsy.

He had to get a bunch of samples, and the pathologist was looking at them as he was getting them. He tried to pull that needle-side out, and it squirted blood. He was like, “Oh, I think we’ve hit an artery, but it’s fine and not a big deal.”

He just stuck it back in and waited for it to cool back down. Then they did another one on the other side, going in a different angle, and got a bunch of samples from that.

It turned out those samples weren’t enough. However, the preliminary report did say it was probably Hodgkin. They just didn’t have enough to prove it. 

Tips on getting the biopsy 

A lot of people say not to do the fine needle biopsy. If you’re going to do it, do the full excisional biopsy because if they see anything sketchy in there, they’ll make you do the excisional biopsy anyway. So if your doctor will do it, it’s going to hurt, but it’s not going to hurt anything.

Going to the ER

I went to small group that night with my husband, and I kept yawning, but it felt like I couldn’t get a good yawn in. I felt like my chest was not doing the work of breathing.

With him having nicked that artery earlier in the day, my parents said, “We should go to the ER. We don’t know what’s going on in there, if you’re bleeding or something else is happening.”

I got to the ER, and I was crying because I couldn’t breathe. My husband was driving me there, and he’s not medical at all. I got there, and I was like, “I can’t breathe. I have cancer, but I can’t know for sure that I have cancer.” 

It was really confusing. They thought it was just an anxiety attack because of everything going on in my life. But then they did a CT scan, and it showed bilateral pulmonary embolisms, so I had blood clots in my lungs. 

At the moment, I was really optimistic about everything. I was like, ‘I can do this. I’m tough! Cancer doesn’t have anything on me.’

Then reality hit, and cancer actually has a lot on me. I was humbled very quickly.

Roller coaster of optimism and reality

In the beginning, I posted this Instagram post, “Everything is going to be fine. This is the ‘good’ cancer.” That’s a load of BS. It’s not the “good cancer.”

There’s no such thing as a good cancer.

I was super optimistic there, saying, “I’m going to ICU, but I’ll be fine.” Then ICU delirium kicked in, where I got no sleep and there was beeping all the time. 

The next week at chemo, I had an anaphylactic reaction to one of the pre-meds. I didn’t even get to start chemo before I tried to die again. It was just constant kicks to the shin, over and over again. You think you’re doing fine, and then it’s bam, you’re not doing fine anymore.

Every week, I’d be like, “It’s going to be fine. I’m going to do this differently this week and this differently next week.” But chemo is just designed to suck. 

»MORE: Processing a cancer diagnosis

Preparing for Treatment

Describe meeting the oncologist

They usually don’t [meet the patients next day], but since I had the preliminary results, they called him and said, “Do you want to meet her?” He said yes.

We heard he was an early rounder. He came in at 5 in the morning. We had just gotten to sleep because I was on blood thinners, and they were checking levels all night.

He comes in and is super casual, swearing a ton. He’s young and funny. We loved him instantly.

My family was in shambles at that point, but every time we meet with him, we feel better about the situation because he’s so casual about it. He’s confident in what he’s doing; he had a plan in place. I know it’s his job, but it’s comforting to have someone with good bedside manner who makes you feel like everything’s going to be okay when you have no idea what’s going to happen in life.

You’re trusting someone to put these intense chemicals into your body — and to do it and for it to be worth it, because if I did it all and it wasn’t worth it, that would not be good.

Describe the bone marrow biopsy

This is one time I got to be a patient advocate for myself. This doesn’t happen to most people.

I got to the biopsy. They laid me on my belly, pulled me over to a table, and gave me Benadryl and a little bit of Versed, I think. They were going to put me all the way to sleep since they were going to do a chest and bone marrow.

But I didn’t go all the way to sleep, and they started doing things. I could feel them pushing down on my hips and moving me around. I wasn’t all the way sedated and so confused because I was kind of sedated, so I was really out of it because I was so high. They were doing these things and told me I’d be asleep. I wasn’t asleep, so I was crying. I was like, “Why am I not asleep?”

Everyone was just walking around me, doing their jobs. They probably thought I wasn’t going to remember any of it, but it’s still stuck in my head. Then they were like, “Why is she not asleep?” So they gave me more meds, and I went to sleep instantly. 

Port placement

The whole time I was in the hospital, I had IVs in my forearm. Every time I would move my arm, the IV pump would start beeping and hollering, so it was not easy to sleep.

They were like, “We’ll get you a port.” They kept pushing it back every day, and I still had these terrible IVs in my arm. They couldn’t place them because I was so dehydrated. Every day was like, “You’re getting the port. Oh, you’re not getting it.”

The last day, I got my port really late in the day. I was still high when I came back. Then they said, “Okay you’re going home.” My best friend was working. She was like, “I’ll pull your IVs out.” I thanked her. 

She was pulling them out, and the tape was pulling my arm hair because I still had arm hair at that point. I was like, “Rachel, you’re so bad at this!” She was such a good sport. She said, “You’re fine. You’re funny.” I was so high. Then I fell asleep instantly. I had weird dreams; it was all over the place. That was a fun sedation experience! 

When did you get the full diagnosis?

That was during the (hospital) stay. The doctor came back and said, “Yes, that looks like Hodgkin lymphoma. This is our plan.” But it wasn’t an exact turning point because there was some gray area in there. 

The staging was part of the bone marrow biopsy. They didn’t do a PET scan because as long as it wasn’t in my bone marrow, it wouldn’t change the treatment plan at all. So they did the CT scan. 

They diagnosed me as stage 2B, and it was bulky because for the size of my chest, 7 centimeters is a lot. 

Oncologist description of treatment plan

I don’t really remember because I was so sleep deprived at that point. My mom and I had done a lot of research during the down time in the ICU of what we’d expect to do.

As long as there’s not real lung involvement, they usually do ABVD chemotherapy. We weren’t sure if they would do the “B” or not, since I’d had the pulmonary embolisms. But we ended up doing ABVD, and we trusted him with everything in us.

He said we’d do 4 treatments of ABVD, do a PET scan, make sure it’s reacting, then drop the B so I wouldn’t have long-standing lung issues. 

Talk of fertility preservation

My husband and I never wanted to have kids. The doctor said they would use Lupron before the first chemotherapy, and I said, “No, I don’t want to do an extra medicine for children I don’t want to have — especially with the chemo. I don’t know what it’s going to do to me.

A lot of people still have kids, and it’s not a big deal at all. I always felt if I could change my mind, I could adopt, and I didn’t want to put my body through that. So it wasn’t a worry for me at all.

»MORE: Fertility preservation and cancer treatment

ABVD Chemotherapy

Accessing your port for chemo

I was nervous about getting my port accessed the first time, but they took me back and were like, “We’re going to access your port.” It happened so fast. I never got my port numbed the whole time. No shade to people who do, because I know needles are not fun. I used to give blood before I got sick, so I’m cool with needles.

It literally felt like nothing. There’s such a thin layer of skin between my port and the outside world that it was just, ‘Bam, you’re in. You’re good.’ 

The part that bothered me about the port access was the flush because I would taste the saline flush. It tasted like metal. That triggered all kinds of flashbacks for me. 

Describe the chemo regimen

I did outpatient chemo. I got there first thing in the morning because I wanted to get it over with and sleep all day. I’d get there, do lab work, then meet with my oncologist every other time, so once a month.

Then he would talk to me, and I would go get the chemo. They would do all the pre-meds. The first time, I had that anaphylactic reaction, and my oncologist came running, which was very impressive. Doctors usually don’t run for things, so I was like, “We love you.” They gave me a lot of Benadryl.

I got my actual chemo. Getting chemo itself isn’t that bad. It’s all the time afterward. After that, it was pretty miserable for the rest of the day.

I don’t remember most Tuesdays. On Wednesdays, I’d be sort of out of it, which was good since I had class on Wednesdays for nursing school. I don’t remember a lot of the tests that I took, but I passed them!

It was all 4 drugs on Tuesdays. We’d get there 7:30 a.m., start labs then, and if we didn’t meet with my oncologist, we’d be out of there by 11:30 a.m.

The first time took a little longer since they pushed everything slower, just to test my body and see how it could do, and because of the reaction. On oncologist days, I’d probably leave there by 1 p.m. or 2 p.m. 

I did it from the last week of October to March 31st. I never skipped anything. I didn’t have to be delayed or anything, so I did it as fast as possible. But it was still a long time. 

I got the Neulasta, which injects a medicine that stimulates your white blood cell count. I never got neutropenic throughout my whole chemo. It was a win for sure. 

»MORE: Read our comprehensive ABVD chemotherapy info page

ABVD side effects and what helped them

The day of, I’d get really nauseous. Part of it was the medicine I was allergic to was the anti-nausea medicine that was supposed to be really good for coverage.

So day of, I’d take Zofran every 4 hours and Phenergan. My mom stayed home with me on the days of chemo and would work from my house. She set a timer on her phone, was amazing, on top of it constantly.

I could not have done it without her. My husband set alarms all night. We’d get up at 4 a.m. for it. I took Zofran so much. 

After the nausea, I don’t think I threw up, but maybe once or twice. It was a constant feeling of impending nausea. After the Neulasta went off, which was what stimulated the white blood cells, I would get really bad body aches. I felt like a walking bruise. 

I would try to lay in the bathtub to make it feel better. My husband would have to pick me up out of the bathtub. He was really the MVP, too. My mom and him made everything amazing, along with my dad pulling all the strings. 

The body aches went away. They gave me a painkiller for it, but I didn’t like the way it made me feel, so I didn’t take it. It was just sleepiness. 

All that Zofran makes you constipated, so I had to take MiraLAX. I was super exhausted and wanted to sleep the whole time. 

Describe the constipation

I texted one of my friends at 2 in the morning and said I might never go to the bathroom again. She was like, “You’re going to be fine.” She’s a nurse, too, so she was chill about everything. I was like, “This is the end of the world for me. I feel I might be dying right now!” 

Tips on getting through chemo side effects

Once you go through one chemo week, you know what symptoms you’re going to have the next time unless they change something.

My mom kept track of what symptoms I had and when, so we could medicate for it beforehand. That made all the difference in the world. Knowing that you’re going to throw up is not really helpful.

If you’re going to throw up, the deed’s pretty much already done. So we wanted to keep ahead with the Zofran. My mom’s a nurse, so she’s pretty aware of those things. That helped a lot, too.

My biggest things were to listen to my body. I drank a lot of water. My mom had that on a timer, too, even though I would have to wake up to drink. That made me want to yell at people, but staying hydrated made a big difference.

I just listened to my body. I didn’t move when I didn’t feel like it because it didn’t make any difference in my outcome. It was living second by second for me at the time.

»MORE: Cancer patients share their treatment side effects

Describe the mid-chemo PET scan

Everybody does it differently. My doctor’s office was lax on restrictions, so I didn’t have to be carb-free the first day like a lot of people do. My thing was just no food or drink after midnight, except for a cup of water in the morning if you need to take medicine. 

You got there and check in. They started an IV, and they inject radioactive glucose into you. That’s very scary when you don’t know what’s in it. 

You chill out for an hour, and they wait for it to go through your system. I just laid there. Animal Crossing was out, so I played that while I waited. Then they make you go pee so you don’t have a lot of stuff happening in your bladder — so it doesn’t light up.

Then you lie on a table, and they take you through [something that’s] more of a tunnel than a donut. Then they pull you out, and it moves so slowly that you’re like, “Am I actually moving, or am I just sitting very still?” 

You hear what sounds like a fan running. They slowly put you in, then you’re in it. They get whatever images they need, and you’re out of it all of a sudden. Then you’re like, “Okay, that was it, I guess.”

You have to wait, which is a horrible experience because you wonder, “What if there’s something really terrible I’m going to find out tomorrow?” Actually getting that scan done, you’re like, “It might actually be real.”

Handling the “scanxiety”

I actually didn’t handle the wait well at all. With my last scan, I went to the medical records office myself and got the results. I tried to fill the time, but there was always still that time running in the back of my head where it was like, “Okay, they should call soon.”

There were some times when my doctor’s appointment would be a couple days later, and I was like, ‘I’m not waiting for that doctor’s appointment. ‘

“You need to call me when you get those results. This is not a joke, not a drill.” I needed to know what’s happening because I was still having some of the symptoms. We knew it wasn’t reacting perfectly, and it wasn’t.

Avoid comparing scan results

You shouldn’t compare your cancer journeys to other people’s.

But a lot of my friends were getting clear scans by that point. Mine wasn’t clear; I had a Deauville score of 3. They said it was just because of the size of my tumor. 

But they still dropped the bleomycin because it had gone down. It wasn’t actively growing anymore, so they dropped the bleomycin and let me go on with chemo.

It was