Arielle’s PMBCL Non-Hodgkin’s Lymphoma Story

Arielle was diagnosed with primary mediastinal B-cell lymphoma (PMBCL), a subtype of non-Hodgkin’s lymphoma.

In her story below, she explains in detail how she got through intense chemo, how she approached fertility preservation and how she advocated for herself as a patient. Thanks for sharing your story, Arielle!

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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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Arielle’s Story on Video

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Diagnosis

How did you get diagnosed?

Summary: I felt the first symptoms and was misdiagnosed a few times before getting a fine needle aspiration. Results took one week.

My first symptoms were pain in my neck, shoulder and chest. They were misdiagnosed for a couple of months as “costochondritis.” I went to urgent care while out of town and followed up with my primary doctor. Both did chest X-rays and came to the same incorrect diagnosis. 

My appetite waned, and I started to lose weight but didn’t take any action. Then the lymph nodes along my neck, throat and clavicle area swelled up suddenly. I called my primary doctor’s office, but they couldn’t get me in that day, so I went to urgent care again.

Did you choose treatment?

Summary: No, I just followed my doctor’s recommendation, despite my history of using more alternative medicine.

I don’t know if this is true for other people, but a part of me felt like, “Is [R-EPOCH chemo] the right choice? Is this going to save me? Should I be questioning this?”

There was so much to question about the process, but I never questioned the chemo, even though I’m pretty strongly alternative in terms of alternative medicine. I don’t typically go down the traditional western medicine path and yet cancer… Chemo? Let’s do this.

Whatever they tell me, whatever’s the right chemo — okay, you just tell me what to do. I questioned everything else, but that I did not. That was just take whatever they tell you. This is the poison of choice? Okay, got it.

I was getting so sick, not oxygenating and all these things, so they needed to give me a round of chemo to start. Before we even had the full diagnosis, they gave me two baby doses of Cytoxan, which is kind of an evil chemotherapy.

It’s very harsh, very old, makes your hair fall out immediately. Then we found out what my diagnosis was. I did a full round of what my treatment would be, which was 6 cycles of dose-adjusted R-EPOCH.

Chemotherapy

Describe each cycle of chemotherapy

• Week 1: Continuous infusion through PICC line (arm) or port (chest) for 24 hours, lasting 5-6 days
• Week 2: Side effects tend to kick in, ranging from nausea to mouth sores
• Week 3: Typically the healing week when blood cell counts recover
  • NOTE: If your white blood cell count (WBC) doesn’t rebound back into the standard range, your next chemo cycle may be delayed.

What was Week 1 of chemo like?

Summary: It was the week when I got the drugs infused.

I did it as an inpatient, so I would check into the hospital and do approximately 6 days of the continuous infusions around the clock. 

The R-EPOCH chemotherapy is a 21-day cycle, so approximately 6 days I’d be in the hospital. Sometimes it was longer if I had a complication, but approximately 6 days.

Then by the end of the cycle, maybe 3 to 4 days before the next cycle, I’d start feeling better. I’d start to get more energy and want to do something.

I’d want to go out. I’d want to go for a walk, which was amazing. I wasn’t driving, so I would start walking. I didn’t feel safe driving, so I would just walk here at my house, out on my deck, and get a little sunshine.  

I could just do more, a little laundry, little things. Maybe I’d wash a dish or something. Then I’d remember that I would have to go back in for my next round, which was really hard. 

How did you deal with chemo?

Summary: I welcomed each bag of chemo into my body, told it to do its job, then told it to leave.

After that first round, I realized I was very angry at the chemo, so I did a little bit of work on that. I realized that I was both angry and grateful, so I created this mantra. I would look at the chemo bag each time and call it “liquid gold” because it was gold-colored for EPOCH, and etoposide is the orange-y color.

I would look at it and say, ‘Thank you so much. Please come in my body, welcome it, welcome to come into my body. Do your job, then get the f-ck out. No lingering!’

I would spend those 6x days welcoming each bag and telling it to get out. Honestly, those days were all about a regimen of drinking enough, eating enough, using the bathroom enough, because that was tracked in the hospital. How much fluid you peed out, if you had a bowel movement. If I didn’t, I couldn’t get the next bag of chemo, so it was really serious.

We all cheered on, ‘Please poop!’ Never talked about poop that much in my life! Then also getting in that walk, so it was super, super regimented in the hospital, and I had to focus on the basics.

What was the first cycle of chemotherapy like?

Summary: I was scared and shut down emotionally, went through the motions of getting my chemo and did not process anything.

Honestly, I shut down in the first cycle. I think I was so scared of chemotherapy and so scared of — I don’t know I if was scared of dying, but I was so scared of the experience that I really checked out. I think for the emotional safety of that moment, I shut down and [my wife] was really, really was scared that I was going to shut down for the whole process.

What I realized is that after my first cycle, I came to that moment of, “Okay I can now take a breath and can grieve this.” 

I just cried. 

I just cried about it, and my lovely therapist did Skype therapy with me. I got to just be present with all the feelings that were coming that I had shut down during that first round, and I think that’s when it felt less scary. 

I’m grateful, though. I wouldn’t change it. If I could go back, it’s not like I would say to myself, “You need to feel during this first round.” I think that was exactly what I needed to do to get through such a scary moment, the acute scary moment, to then have enough energy, enough emotional energy especially, to move through all that was going to come. Not only the chemo, but all the side effects and all the other problems that I ended up having.

How was the port and PICC line?

I had 3 PICC lines and 1 port — a port that went wrong, unfortunately.

I knew the port was a good choice. Under the skin, less chance of infection. It was either infected, or something was not happy underneath the port. We took it out, and I was fine.

I managed the PICC line. It’s just a lot more work but no infections, no problems. You just have to keep it clean. It’s weird. You have a tube sticking out of your arm, which is totally different than a thing in your body that you can’t see.

For me, every so often I’d get a little nauseous when I looked at my PICC line and think that tube’s going into my body right now. There’s some disassociation that has to happen to be able to go through some of these things.

(Editor’s Note: The port infection is considered very rare.)

»MORE: Read patient PICC line experiences

What was the PICC line like?

You were connected completely except those moments when they changed the chemo bag. 6 days of just being connected. I remember having to figure out how to shower, how to put on and off my clothes so they wouldn’t get stuck on the tube when I would take it off. 

I did that once. The way we put the lines on, the way the nurse did it, we got it on backwards. When I went to shower, my shirt was stuck! I pulled it off and got it through the arm, and it was stuck on the line. I rested it on my IV machine, and we waited 20 hours later till we could disconnect it from the channel. 

Side Effects

What were the side effects?

Editor’s Note: A lot of the type and degree of side effects vary person to person.

• nausea
• fatigue
• constipation
• mouth sores
• loss of appetite
• stomach/digestive pain

Describe the side effect cycle

[Starting Week 2] I would have a few days where I would feel kind of loopy from all the chemo. I’d feel really nauseous, kind of lightheaded, and I would become neutropenic. That’s when my white blood cell count (WBC) would drop, and I would just be exhausted.

Usually every round I would get some quantity of mouth sores. Sometimes it would just be a few and I was sort of okay, but mostly once I got to Round 4 it was awful. I do not know how many mouth sores I had because I couldn’t open my mouth even a tiny bit.

The doctor wanted to look at it, and that’s the only time I would open my mouth. If I wasn’t in the hospital, then I was lying on the couch. I was miserable for a few days. I had no energy. All I could do was make myself eat and drink.  

I think constipation was the biggest one. Oh man, something we don’t want to talk about, but we have to talk about it because figuring out how to manage my digestive system was probably the hardest part about chemo. Once I figured that out, I was good.

That was really key for me with nausea, to try and distract or pace around the house. Just something to change the moment.

Please rate the side effects you got from chemo

Everyone tracks differently. Arielle rates her side effects with chemo an 8 out of 10. This indicates that she happened to have a more difficult experience. 

Were you prepared for the side effects of treatment?

Summary: No, my medical team did not warn me about the side effects nor how to deal with them.

Absolutely not. My doctor was far more focused on the big picture, to the point where she didn’t believe me when I was having side effects. I had to self-advocate to the point of frustration just to be believed and supported. It shouldn’t have to be the patient’s responsibility, and I wish that the doctors spent a bit more time learning about the side effects to help patients along from the beginning. 

One example: I had pretty awful stomach/digestive pain from the chemo, got a prescription for an anti-acid, but no one told me that it works best in the morning on an empty stomach. I spent several weeks in pain until my doctor randomly shared this information.

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

Hair Loss

Describe the hair loss

Summary: It can hurt when the hair falls, so I buzzed it off short first, then shorter as more hair fell. Hardest part was when the eyelashes and eyebrows also fell. Oddly, it was less weird because at least my appearance matched how I felt. Wore a lot of cute hats!

Oh, hair. I had to let go of hair right away because I had not only my R-EPOCH Round 1 but that double dose of Cytoxan, so the hair just needed to come off. It hurt. 

Because I was so sure about that, I sat in my living room, and I asked my sister to be here. Jess pulled out the buzzer. I decided I didn’t want to shave my head. I didn’t want to have a bald head. There’s something about that smoothness that was more scary to me.

I know some people really want that. For me, I just wanted it really, really, really short, so I buzzed it down to an inch or half an inch, and we would get shorter as it was falling out more. We would maybe buzz it down a little bit more.

But it was so tender on my head. Everything was so tender. It was really hard. Hair is just one piece of the puzzle. As I’m talking about hair, I’m thinking I didn’t feel beautiful at all. Because I attempted to harvest my eggs, I was bloated. From my chemo I would get small, then bloat from the steroids and all the fluids. 

I was constantly in this state of flux, and I was nauseous. Who feels sexy when they’re nauseous? You don’t feel beautiful. You feel awful. In some ways, the lack of hair went with everything. It was part of the package, like, “Oh yeah, that makes sense. That’s what I look like.” It got harder the more pale I looked.

I kept some hair, and it slowly went away through the cycles. Then my eyelashes and my eyebrows went, and that was so hard. That changed everything. I didn’t look like myself anymore.

I remember I would get up in the middle of the night and go to the bathroom because of all the fluids. I would go to the bathroom and catch myself every time, and I was startled every time. 

»MORE: Dealing with hair loss during cancer treatment

Your scalp hurt when you lost your hair

Your scalp hurts. At least for me it did. It was so painful. I had very, very white-gray hair naturally. Now it’s a bit darker grown back in, but you could see the red of my scalp, and I just wanted it off. It was painful. No one tells you that. In the medical system, no one tells you that because it’s not “important” right?

What’s important is curing you of cancer, but what’s important to us as cancer patients, as the person who is dealing with it, is to know how to navigate all those pieces of the puzzle. And to be able to anticipate some of it. This may not happen to you, but I wanted to give you a head’s up. 

Hair grew back 2 to 4 weeks after the last chemo. How was that?

Summary: I was happy the hair started to grow. Then the awkward phase hits.

It was so amazing when my hair started growing back. I never had super, super short hair, never buzzed my hair or anything, but I thought I looked pretty cute when I had really short hair. I all of a sudden felt this new confidence, maybe like, “Oh, I actually look okay!” It was not a look I had ever intended, but it was fun. There was some joy in it, joy in the hair coming back in general, but joy in the styles.

Then of course the awkward of, “How is this going to grow out, and what am I going to do with it?” And there’s the growing pains. I’ve had my first hair cut! This is grown-out first hair cut. I let it grow. I got the amazing curly, weird look that just did not have a style and finally chopped it. I’m so happy.

I think that was actually the biggest shift for me away from feeling like I looked still like I had had cancer, even though I’m sure people couldn’t tell. But to me, getting a hair cut, getting a style, meant I was just Arielle. I wasn’t Cancer Arielle.

Going through chemo is a ghastly experience, one that should afford some privacy. This is not always true and, to be frank, it was humiliating, scary and frustrating to share a room with a stranger while going through this overwhelming experience.

What was the biggest surprise?

My port bruised up and didn’t “work.” My oncologist didn’t believe me, and it was really a terrible experience to get it checked and then removed. That could’ve been handled so differently and in a supportive way.

What helped when you lost all your energy?

Summary: Getting blood transfusions and IV fluids, available in hospitals and clinics (if you’re outpatient).

Blood transfusions. I think I had 3 or 4. I can’t quite remember. They were amazing.

I was terrified, totally terrified of course. Blood, someone else’s blood going into your body — it looks crazy going in your IV, but it’s the best thing ever. I would feel like a million dollars 24 hours later; I had energy. Same thing with getting fluids, so if you’re worried about that, it’s not as scary as it seems. It’s actually such a blessing, so sometimes I’d get a little extra something to get me through [the cycles]. 

How did you manage your thoughts and emotions?

Summary: I took it one step at a time.

I decided very early on that the only way for me to manage it was to stay right in the moment. Anytime I started thinking about the next day or next round or how many more hours I had left on the bag or anything future-thinking, I would flip out. I would panic. I would get super emotional. I’d get fearful.

It’s manageable, but the only way for me it was manageable was to slow down to the moment like, ‘What do I need to do right now? I need to go to the bathroom. I’m going to go pee. I need to eat something. I need to have a snack. I’m going to take myself to the kitchen or call the nurse for a snack. Or just the next thing right in front of me.’

I wasn’t thinking beyond. It was just all about the steps along the path, and that’s what made it manageable for me.

What do you wish you had known before you began chemo?

Summary: I wish I found someone with the same cancer for emotional support from the start.

It’s really hard to answer that, because I think that everyone needs something different. For me, I cope with people. That’s just who I am. I’m a dependent coper. I do better when I’m in communication with someone, so finding other people’s stories was the best gift for me.

I could take what I want and leave the rest of it, like I didn’t have to take it all, so that was really important.

I wish that even sooner in my cycles I had met in person people who had this specific cancer. To me, that connection, that face-to-face contact, was just huge. I met a woman here who didn’t have a lot of side effects. 

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

It’s not like she could really empathize with some of those things, but there was enough that she could empathize with. She could empathize with the anxiety. I had anxiety through the roof! I didn’t know I was an anxious person.

I’ve now learned I’m an anxious person, but it really came out. I’m not anxious in my day-to-day, but there’s anxiety underneath so full force. Having someone else reflect back at me, like, “Oh my god, I was so anxious, too!” It was critical.

Be your own advocate

Summary: The doctor is focused on saving your life, not quality of life like side effect issues, so self advocate by asking any and all questions important to you. 

The thing I did not get from my oncologist was any helpful information on side effects. This I what I’ve learned: Oncologists are amazing, they are brilliant, and what they know is chemotherapy.

They know treatment. That is what they studied. It’s what they see day in and day out. It’s what they have to care about because it’s the treatment, whether it’s chemotherapy or immunotherapy, it’s the treatment that’s curative.

I started to get neuropathy, and I told my oncologist. She lowered one of the dosages, one of the chemo’s within the cocktail, and my neuropathy went away basically. I was like, ‘People don’t know to do this. If you just say something, and the oncologist can help you, maybe, sometimes you have to really push.’ 

It was painful. No one tells you that. In the medical system, no one tells you that because it’s “not important” right? What’s important is curing you of cancer, but what’s important to us as cancer patients, as the person who is dealing with it, is to know how to navigate all those pieces of the puzzle and to be able to anticipate some of it. “This may not happen to you, but I wanted to give you a head’s up.” 

When you have those gut instincts, you have to go with them. You at least have to explore them is what I learned. When I have something in my gut saying, “Whoa, whoa, whoa, hang on a second,” voice it.

Doctors did not like how many questions I had, but I asked them anyway because they were critical. I’m a human being, and I get to ask all my questions and take up space.

That’s the best advice I can give: Take up space. It’s your life. It’s not their life. They’re not the ones going through the chemotherapy. They know a lot of things, but they’re not the one. You know your body. 

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

Can you work during treatment?

There are people who didn’t have any side effects, who worked full-time through treatment. I was a wreck! It was impossible. It’s laughable. There’s no way I could work at all.

It was who could be there for X and who could be there for Y, and maybe some people get that from 1 person or 2 people. 

I had to kind of piece it together. As I said, I didn’t get everything that I had hoped for or that I felt I needed, so there was still loneliness in that, but I definitely asked for things as best as I could. And I had to accept when I couldn’t get them. 

I don’t wish it on anyone, even people that I struggle with. I would never want that for them, because it was awful. Getting as much support as I could was the only answer, and some of that support had to come from me.

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Primary Mediastinal B-Cell Lymphoma Stories