Kelsey’s Stage 2A Hodgkin’s Lymphoma Story

 

• Name: Kelsey R.
• Diagnosis:
  • Hodgkin’s Lymphoma
  • Stage 2A
• Initial Symptom:
  • Bad leg itching with no rash
  • Enlarged lymph nodes
• Treatment:
  • ABVD chemotherapy
  • Radiation

 

It is single-handedly the most important thing that’s ever happened in my entire life. Good and bad but mostly good, honestly, in terms of what I’m doing with my life now.

The Patient Story retains full editorial control over all content. This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Pre-diagnosis

Tell us a little bit about yourself

I am originally from Arkansas, from a town called Bentonville. I’ve lived in Austin, Texas, for almost a decade. I moved down here after college.

I’m a historian. I have a master’s degree in historic preservation. I work with buildings and objects.

I co-own a vintage furniture store with my sister. We mostly sell online and that’s really fun.

I’m also a writer. I do some work with The Patient Story. I’ve done some comedy writing in the past with different outlets like CollegeHumor and dabbled in stand-up a little bit.

I have a lot of jobs. I’ve also been an architectural historian. I do survey work and things like that.

The doctor comes in and he just turns ashen-faced immediately when he feels my neck. He leaves and I know something’s up.

What were the first symptoms?

It was August 2017. I was finishing up my master’s degree at the University of Texas. I was spending all summer writing my thesis, super exhausted, stressed out, [and] not feeling too great. I was having a lot of allergies. If you’ve been to Austin, you probably had some flare-ups so it’s not uncommon.

I had a lymph node that started growing on the back of my neck, about the size of a quarter. I went to my primary care doctor to get some routine medications filled and was like, “By the way, I got this thing. Probably nothing.”

I’m kind of a natural hypochondriac. I trained myself to be the opposite. I was like, “It’s probably nothing,” and they got me some antibiotics.

It didn’t do anything so I came back. Another round of antibiotics didn’t do anything. My primary care doctor said, “If this [lymph node] wasn’t moving, I would be worried this was cancer.”

When I went back for the last time and it hadn’t done anything, they referred me to an ENT. They had me do some blood work, which came up clear essentially and I did a little celebration. I went to the ENT and he prescribed me more antibiotics.

When I went for my follow-up, I had this lymph node — my supraclavicular lymph node on my right side — grow to about the size of an egg, literally overnight.

I went in [and] I remember I had no air conditioner in my car. It’s Austin in August. I’m melting. The nurses are like, “Oh, you poor thing.”

The doctor comes in and he just turns ashen-faced immediately when he feels my neck. He leaves and I know something’s up when the nurse comes in and hands me an ice-cold bottle of water. She’s like, “I figured you’re hot.”

My doctor came back in and he was very concerned. He said, “I want to do a needle biopsy.” It was just this moment. “Wait. What? Whoa, whoa. Where’s the antibiotics? Give me more of those.” Totally not on my radar.

Getting a biopsy

He did an ultrasound. He did the needle biopsy and it didn’t hurt at all. I said something along the lines of, “But aren’t cancerous lymph nodes not supposed to hurt? Because this one hurts pretty bad.” He was like, “Well, I just stuck a needle in it and you didn’t feel it.” I was like, “Oh.”

Then he was talking to me about results and when I’d get them. I just remember looking at him, “But tomorrow’s my birthday,” like that was going to make him not diagnose me with cancer. He looked at me and just went, “Uh, happy birthday…” like he was trying to be nice. He had no idea what to say. He’s fantastic but I’ll never forget the look.

The next morning, I woke up to a phone call from the nurse that they thought it looked like lymphoma and they wanted me to do a neck dissection biopsy.

It was horrible. I woke up on my birthday [to a] 9 a.m. phone call. I just sat there and bawled in my bed for a couple of hours [and] called my husband — or my fiancé at the time. My fiancé had called my two roommates and let them know what was going on.

When I walked out of the room, I just fell into their arms. It was very sweet. They’d gotten me [food] for my birthday. They tried to make it fun.

I remember thinking, “This is actually a relief,” because lymphomas are typically pretty treatable. I remember that was part of it.

I’m a hyper-paranoid person. I’ll just go down a rabbit hole. By the end of that night, I knew what every lymph node was called, what it drains to, and what it could possibly be. I knew that this one swelling was really, really not a good sign. He had told me he was thinking lymphoma would be the most common thing and that was what I really had dug into.

 

Honestly, that’s such an anxiety-inducing time. The wait is the worst.

Diagnosis

Did you have anxiety waiting for results?

Yeah, it was horrible. Honestly, that’s such an anxiety-inducing time. The wait is the worst. Not the worst in terms of how you’re feeling but emotionally it’s horrible.

It took them a really long time to get me diagnosed. I went in for one surgery and it was inconclusive. Then I went in for another neck incision.

I was laying after in recovery. This nurse comes in and I learned my ENT was super adamant about getting a good sample. He made sure there were conclusive results before he woke me up.

I knew then.

Then there was the PET scan that would show the spread. When I think of some of the worst days in my life, the day I had that PET scan was just horrible because not only are you jacked up on a weird carb-free, caffeine-free diet, but you’re just sitting there while something is telling you how bad it’s going to be. I’ve never felt that way. It was horrible.

At that point, I had already been through so much analysis. I had been through so many different tests and still had tons to go before I could start chemo. I was just exhausted. My parents were there and they were emotionally exhausted.

Something about having a machine analyzing me for an hour or so and telling me my chances of living. It was just really difficult for me to handle. I remember they were putting me in the machine and that version of Despacito with Justin Bieber came on and I made them change the music for me. It was a big party song that summer. “Please turn this off.”

I remember leaving the PET scan upset and just collapsing in my dad’s truck and having an upsetting conversation with him. He was always the one that had the answers for me and he didn’t have them this time. It was just one of those things where I think we were just so emotionally exhausted that we just kind of collapsed.

Getting the official diagnosis

Once I was staged, it was just a matter of getting going. My anxiety was so much better. I think the worst part was knowing and then knowing what I had, but not how bad it was.

I had a friend recently with Hodgkin’s lymphoma and his was refractory. He’s fine now but it was a very scary ordeal. That was my only experience with lymphoma was his experience.

Once I was staged, after that it was just a matter of getting going. My anxiety was so much better.

Breaking the news

I told friends pretty much as soon as I knew because I don’t hide things very well and that’s huge. It’s not a little thing that I’m hiding. People were trying to see what I was doing for my birthday so people were already texting me a lot. I was filling people in.

Processing the diagnosis

I’m a go-getter. It was pretty much, “All right, let’s do it. Let’s get it over with.” That was kind of my immediate reaction.

Looking for an oncologist

Once I got a preliminary diagnosis, my ENT referred me to an oncologist in town [who] he refers a lot of people to [and] that he really liked. I was a little hesitant.

We live two and a half hours from Houston. We were close to MD Anderson. They were on my insurance and they had saved my grandmother’s life. We already had a relationship with them. I was pretty adamant about getting a second opinion there.

I know that with my diagnosis, it probably wasn’t necessary but I don’t regret going and getting that second opinion. I told my ENT that I was going to do that and he was like, “Yeah, you do what you need to do. I’ll just let you know that I have referred lots of people to this person. I had a really good friend who went to MD Anderson and then came back and ended up sticking with this person because they just liked his bedside manner so much more.” I was like, “Okay,” and that is what actually happened.

He was a really fantastic doctor who was really optimistic and very, very knowledgeable and listened to me. My doctor at MD Anderson, while brilliant and lovely, just felt very impersonal. I don’t really feel like I got much out of that. I did end up doing my radiation there, which I don’t regret at all.

I came back to Austin after I got my second opinion and stuck with [the] doctor that I originally had seen. He is the doctor I still go back [to] for my checkups.

When someone is in charge of saving your life, you want them to actually care about your life and find it interesting and important.

Importance of a good patient-doctor relationship

I wanted someone that was willing to answer my questions and actually take time with me. But also I think that the thing that still draws me to this doctor or any doctor I’ve had is interest in me as a person. When someone is in charge of saving your life, you want them to actually care about your life and find it interesting and important.

Like I said, MD Anderson, lovely doctors, lovely researcher, but she didn’t care what I do for a living. She didn’t care about me at all.

My doctor knows me very well and all the nurses and everyone there knows me very well. I think, for me, that was really important because it made me feel like they would actually respond to my concerns because I wasn’t just another test in a tube or something.

I went to Texas Oncology. They have lots of different branches in Texas. There was one that was about five minutes from my house, which is great. It rocks.

Treatment

ABVD chemotherapy

I started ABVD in November. September 22nd was the day I got diagnosed. That was my birthday. I didn’t start until right before Thanksgiving. It was a two-month wait until my first round.

My first round, I was terrified, obviously. I started feeling improvement [in] my symptoms almost immediately. I was really lucky that I didn’t have an allergic reaction or anything to the chemo itself. My initial reaction was pretty mild. I lost a little hair. I ended up shaving it anyway after that.

I was mildly sick but my itchy legs resolved immediately. I think that that was also possibly because my immune system was being repressed. It was very crazy. I immediately felt better after my first round.

Side effects from chemotherapy

Hair loss

It was surprisingly not that emotional for me. I’d always had really long hair. The year before that, I had just chopped it all into a really short bob. I’d already made that leap and then when I found out I was going to lose my hair, I started dyeing it weird colors, having fun with it, and cut it into this really cute super, super short cut that I would never just do on my own.

After my first round, [my hair] was starting to fall out so I shaved it. I had fun with it. I don’t want to be bald again. I don’t think it’s a good look for me but I wasn’t super torn up about it.

My mom actually owns a wig shop. She owns a store that sells wigs and breast prostheses and bras for breast cancer patients since the 90s. I’ve been around wigs my whole life so she hooked me up with a couple that I would wear sometimes. I was more au naturel. I was also in Austin in the winter and it wasn’t really that cold so it was fine.

Did your grandmother inspire your mom to open a wig shop?

My grandmother actually opened a store first when she was going through cancer. She ran a hair salon and beauty supply store. She always sold wigs in Joplin, Missouri.

Whenever she started going through cancer, she realized there was nowhere for her to get breast forms — she had a double mastectomy — or bras or anything that wasn’t in a weird medical facility with dudes running it. She started selling those things. She became one of the only providers in the region for that.

Then, I believe, in 1997, she helped my mom open a similar store in northwest Arkansas, which is about an hour away. It was very successful.

Nausea

I got a list — I’m sure most people do — that’s about 20 pills long of, “If this doesn’t work, move here. If this doesn’t work, move here.” I was very on top of my anti-nausea meds. I think I had [Dexamethasone]. I had steroids. I had Olanzapine, which I didn’t like what it did to my head but it was so good. I had almost no nausea. It was actually pretty incredible.

[Olanzapine] made me feel really paranoid. I took a lot of Lorazepam for nausea, that was one of the main ones.

I had a friend send me some cartridges of medical marijuana from L.A. That made me such an advocate for medical marijuana. I was never anti-marijuana but when I’m taking this at a particular dosage for a particular reason, this cut through four different anti-nausea meds that I usually take, which are really messing with my head. It became one of those things where I was able to cut out certain meds just by substituting that. It was honestly pretty incredible.

He did it without asking me because he didn’t want me to be liable for anything. It showed up. I was like, “Okay. I’ll give it a shot.”

Neutropenia

After my first round, I went in for my second infusion and they did all the blood work. They were like, “Whew, that really knocked out your white blood cells.”

They were telling me that neutropenia is pretty common in Hodgkin’s Lymphoma patients, which weirdly went against what the MD Anderson doctor told me. But that was my experience, that it was common.

I had a really low white blood cell count the whole time and they could not give me Neulasta to up my white blood cell count because it would interact negatively with the Bleomycin — the B in ABVD — so I couldn’t have that. I just had to live with it. I was just careful and it was fine up until Christmas.

About halfway through my infusions, I got pneumonia and ended up in the hospital for almost a week in Arkansas. It was the lowest point in my cancer treatment. There was a man in the room next to me that was screaming in pain the whole time. And it was a really bad flu season. It was just very scary. It was horrible.

It made the whole ordeal way less scary once I was able to have some protection against infection.

Reading up on Bleomycin

When I got back to Austin, I had read a bunch of studies and research because that’s the kind of person I am. I had read something about how people who were going through a certain amount of rounds, which was slightly more than mine. If after two cycles they had no evidence of disease — which I had at that point, I had a clear PET scan, which was awesome — then you could remove the Bleomycin for the remainder to lower that toxicity because it’s very bad for your lungs.

I still have scars on my wrists from when I scratched myself when I was on it, like on my arms. The Bleomycin made me scar so easily. I just did it [lightly but] it would leave a permanent scar. [Then I thought,] “What’s it doing to my lungs? I don’t like this at all.”

I took that study to my doctor and said, “I know that I’m on fewer cycles but in this study, after two cycles they were able to remove the Bleomycin. Would I be able to do that so that I could take the Neulasta? I feel like my risk of ending up in the hospital again is more dangerous at this point than my risk of relapsing or having refractory disease from not being in the clear.” He agreed with me. He was very familiar with the study and he was like, “Yeah, I think that actually makes a lot of sense. We can do that.”

They removed the Bleomycin for my last two or three cycles and I was able to have the Neulasta. It upped my [blood count] really well and it was such a huge relief the rest of the time. It made the whole ordeal way less scary once I was able to have some protection against infection.

Do you think about what would’ve happened if the Bleomycin hadn’t been taken out?

I could have ended up in a worse situation in the hospital again because the infection I was in there for was not that bad. I was still there for a week. I think about my lungs. I don’t have any scarring and my lung capacity is fine so I’m really, really grateful for that.

The hospital was just such a wake-up call and I wanted to do everything I could to minimize side effects down the road. That was just really, really important to me.

Feeling vulnerable to infection

Most people got a taste of it during the beginning of the pandemic when we were all like, “Lysol everything. You can’t touch anything.”

I remember we were driving back to Austin after this hospital ordeal and my dad was sanitizing the McDonald’s cup that he went inside and got for me. It was like a containment chamber. He’s a little protective but that’s how it felt. It just felt like every single thing was a danger to me. I had to insulate myself in this little bubble.

It was also really scary. I was living with two roommates but they were really, really good about it, making sure they weren’t bringing stuff in the house or just letting random people come over, especially during flu season. But I think if they hadn’t been, I can’t control them. I’ve heard plenty of people have stories like this, so very similar.

Did having a friend who had refractory Hodgkin’s lymphoma impact the way you thought about treatment?

I didn’t think that because I don’t think that there was anything that the doctors could have done differently with his initial treatment. He had very bulky lymphoma in his chest and it was responding. Then the last couple of scans, it just stopped responding. He had a stem cell transplant. He’s doing great now, has a new baby, and life is wonderful. I’m really, really happy for him.

At the time, it wasn’t as much with the treatment. It was funny because I was talking to him when I first got diagnosed. He was already a couple of years past it and he was like, “You know, it’s weird. You eventually just stop thinking about it.” I was like, “No, there’s literally no way. I’m never going to not be thinking about this treatment.”

I was surprised that he hadn’t really done much research. He just let the doctors do what they wanted. For me, there is a point where I need to stop trying to fix the problem and let things ride because there is only so much you can do.

At first, it was, “Oh yeah, I’ll be fine, it’s Hodgkin’s.” All of a sudden, you’re in this very, very serious situation. My brain, of course, was like, “Well, what’s going to happen to me?” [That] was not good for my anxiety.

Advocating for yourself

I think that it’s hard to understand where the line is between complete holistic lunacy and advocating for yourself and knowing your body. In one vein, people are scared to introduce holistic medicine into their lives because they’re scared that that’s going to be the same thing as completely rejecting treatment, which I don’t agree with. But also I think that people get a little scared of advocating for themselves and looking at their treatment options.

Also, it’s one of those things where if you don’t have an interest in stuff like this in general, it’s hard. I have a big interest in academic studies. I read these kinds of things when I am curious about something. If this isn’t something you are already looking for, it might not even be something you think about. Maybe I can see what new research is out there that my doctor maybe hasn’t seen. When I brought this up, he said, “We literally just talked about this in a conference I just went to. This is a new study.” That was cool.

Don’t feel like you’re stuck with this situation of someone not listening to you advocate for yourself.

If you really feel strongly about something, at least bring it up to your doctor. Don’t be scared to ask them questions. If you have a doctor who is making you feel stupid or ridiculous for asking these questions and you have the ability to find a new doctor, find a new doctor because you do not have to deal with that.

I have actually told more than one person who has a doctor who won’t listen to anything that they’re saying or talks to them like they’re stupid or a child, “See if your practice has another doctor.” One girl I know did switch doctors and had a way better experience with her new one. Mine listened to me and was really great but don’t feel like you’re stuck with this situation of someone not listening to you advocate for yourself.

I do think that I’m coming at this from a place of privilege, of someone who knew what to look for in studies and had access. I was still in grad school. I had access to academic journals. It’s hard for me to say everyone needs to go do that but definitely ask for help because there are people who know a lot about this that can help advocate for you as well. I had just graduated in August. My access was still working for the rest of the year so I was able to do that.

With self-advocacy, it’s so difficult to talk about because I came from a place of such privilege. I grew up with a mom and a grandmother who knew how to navigate the system and it was still really difficult. You can talk to the social worker at the hospital and just say, “I don’t know this but this is what I’m trying to do.” People can help.

Taking a more active role in your care

I had grown up watching my mom and grandmother fight with insurance, fight with doctors, fight with billing, [and] fight with patients sometimes depending on the situation. I grew up watching my grandmother go through [a] very long and intense treatment regimen where her cancer had come back a couple of times. She really had to advocate for herself. There wasn’t any foundation or anyone. She started all of that in her town. She really had to advocate for herself. She was just so determined to survive even though her prognosis was really, really bad. I’m not saying that that’s the reason she survived because I don’t want to put that on anything. She dug it up. She made the phone calls she needed to make. She figured out who she needed to talk to. And watching her go through that…

I am the kind of person that I think my normal personality would be to listen to the doctor and be like, “Okay, yeah, you know best.” But because I’ve watched my mom and my grandmother go through that…

Ask for early results. I’ve gotten so lucky. If you’re a young cancer patient and you’re in a place where there aren’t a lot of young cancer patients, you get some special treatment. I’m not going to lie. They will rush things for you. Ask for your results the second they come in. Tell them you’re really worried. Make it very clear to them.

Build a relationship with your nurse, especially. That’s all stuff that has helped me get where I need to be. I’ve never been nasty and I’ve never had to because people do really want to help. They’re just overwhelmed as well.

No evidence of disease

Dealing with scanxiety

I get nervous about scans. Now, I’m almost five years out and I’m not worried about it anymore. But for probably three years, about a week before each scan, I just wanted to vomit. I already have very bad anxiety. I was always a hypochondriac. It was one of those things where I was proven right, my hypochondria was.

I just was really scared every single time. I would just go into this darkness for two weeks.

I definitely got much more in touch with spiritual stuff and self-awareness during cancer. I think that was a big part of it because you’re just so in your head all the time and you have to be. One thing that did make me feel better was not doing the insane research I’m always doing because that’s an anxious tic I have. It’s not a good thing all the time.

My husband would be like, “No, put the phone down.” My dad is the same way. I’d call him and be like, “Dad, I know what you’re doing. You need to put the phone down. You’re looking at articles right now.” He would say, “Okay, you have to put the phone down too.”

We would both be doomscrolling about what if it comes back. What if it doesn’t clear out the first time? What are my options then? What are other people’s stories?

I was way more worried about letting the cancer progress. If I had seen that there was a really high chance that I would lose fertility, I would have probably frozen my eggs but I chose not to do that.

Fertility treatment

My doctor encouraged me to look into freezing my eggs. I did the research and looked into it. At that point, I was so ready to get treatment going because it would delay my treatment another few weeks.

The research showed me that ABVD is not super toxic. I found that most people were generally fine after the course of treatment that I would have. If I were to go on to a stem cell transplant, I think I would have definitely considered those options.

I decided it honestly just wasn’t worth it for me because I wanted to get going on treatment. I was way more worried about letting the cancer progress. If I had seen that there was a really high chance that I would lose fertility, I would have probably frozen my eggs but I chose not to do that.

It’s really hard because I was surprised that the doctors were all like, “You really need to look into this.” Because to me, I was just like, “Just get on with the treatment. I don’t want to die.”

I was 26 and I wasn’t quite at the point where I was thinking about the immediate reality of having kids. I’m about to be 31 now and if I were diagnosed, I think that it would be something I would consider way more intensely. But at the time, I couldn’t even see past tomorrow, let alone a future with kids.

I remember coming out of one of my surgeries for the biopsy. One of the nurses was telling me about her friend who’d had Hodgkin’s and has all these kids now and how it’s great. I’m like, “I don’t care. Good, good for her.” At that point, I was just so concerned about I have cancer.

I’d seen that my chances of remaining fertile were pretty high. If it had been different, I would have probably felt differently about it.

Self-discovery during cancer

Getting into fashion and style

I got way m