After her father’s Hodgkin lymphoma diagnosis, Stephanie still never thought her persistent cough was anything more than allergies or asthma. But after her cough progressed and she couldn’t do or say anything without coughing, she finally decided to go to urgent care.

As doctors cleared fluid from her lungs, they found a mass in her chest. She was then diagnosed with stage 4 non-Hodgkin’s lymphoma only two years after her dad’s diagnosis.

She voices how she processed her diagnosis, how she advocated for her health, and how her father’s diagnosis impacted her cancer journey.

Initial symptoms

I didn’t really have any symptoms other than a persistent cough. I pinpoint this back to a day in February [when] I might have had a food allergy mixed in with some dust contact shortly after. I guess my immune system might have been down and couldn’t fight whatever was coming into my body at that point.

I did a teledoc appointment that weekend. My face was very swollen and I was prescribed some prednisone. A few weeks later, I still didn’t feel very well. I still had itchy lungs.

I went to the doctor in person. They prescribed allergy medication. It was winter in New Jersey. I already have food allergies [and] eczema and so I said, “Okay, add it to the list.”

I noticed shortness of breath in April 2021. I was actually supposed to get married [that month]. My husband, then fiancé, [and I] were in Newport, Rhode Island, for our would-be wedding date and we were walking around. Our hotel was over a little bridge that had an incline.

I noticed that I was getting out of breath and we were just walking around, not even having anything to drink. It was just a nice day and I was very out of breath. I had to stay in the hotel room more than we’d liked.

May 2021 was when my symptom progressed. I started to have a cough and more asthma allergy-like symptoms where I definitely was more short of breath. I went to the doctor and they said, “It’s probably asthma. I’m going to give you two inhalers.” One was albuterol and something called Qvar, which was a little bit more intense. I said, “Okay, this was probably coming.”

Pre-diagnosis

Going to urgent care

First, I went to urgent care where I demanded an X-ray. They said, “You might have COVID.” I knew I didn’t. I asked for a chest X-ray.

Before I even put my clothes back on, they said, “You have something that’s called a pleural effusion or an empyema and you need to go to the emergency room right away.”

This was a different medical group than where I ended up getting all my treatments. They said, “Go to this hospital. We’ll call you in.”

I said, “If this [has] anything to do with my lungs, my dad already has a pulmonologist that’s at a different hospital network. We know people there. I’m going to this emergency room instead.”

They called the hospital that I wanted to go to. You need to advocate for where you want to go [and] what you want to do because it is all about you at that point.

They told me I had about a liter of fluid in my right lung that needed to be taken out. They couldn’t do it that day, but they would be able to do it the next day. Not only was this my first trip to the hospital, [but I’m also] now automatically staying [the] night.

I was admitted on a Monday. They didn’t know it was cancer until Friday. There’s so much fluid in my lung that they first thought pneumonia or pleural effusion and they need to get that out. Once they cleared out the lung, that’s when they did the CT scan and saw the mass in my chest.

They didn’t tell me until Friday. They were just concerned about what was happening in the lung and how to treat it. I don’t know if they didn’t care to look at it. I don’t want to make it sound like the doctors were being careless, reckless, or anything like that, but I think they were just addressing that issue first.

Rolling into the OR, they said, “Oh, by the way, can you sign here? Because we’re also going to biopsy this mass in your chest.” All I remember thinking was, Interesting. My dad had a mass in his chest, but at that point, I still didn’t think it could ever be lymphoma. I said, “Oh, that’s interesting,” and the next thing I know, [I’m] getting a mask on me and going to sleep.

Getting back from the OR 

I wake up. They cleared out my lung, but there was still a lot of infection in there. While they were in there, they took [a] biopsy of the chest and the lung as well.

I get rolled into the surgical ICU for recovery. This is pandemic time so we only had two visitors at a time. A couple of minutes later, my mom, dad, and fiancé came in. I thought, “Interesting. We have three guests. How did we do this? This is very nice.” If my sister was there, that would have been the goal but, obviously, we can’t push it.

I had my important people there and I was asking my fiancé because he was sitting right next to me. I asked, “ Did they say anything? They mentioned a mass [in] my chest. Did they mention anything about it? I don’t know what that is.” He just shook his head and said,, “I don’t know about that.”

I have a popsicle in my mouth because I had a sore throat from the anesthesia. I’m licking away and I said, “Okay, well, this is it, guys. I’m going to be here for a couple of days, go home, and we’ll all laugh about this later.”

Reaction to the cancer diagnosis

I still think it’s absolutely bizarre. We’ll never understand. I’m not sure when I’m going to say, “I just had stage 4 cancer and my dad had it, too, all within five years.”

I was very calm. I don’t think it actually hit me until someone mentioned family planning. That was hard to understand, especially as I’m trying to get married and I have someone who is looking to me to start a whole life together. I thought,“Well, this might get cut short.” But otherwise, I was calm.

I like to deal with things as they come. I accept it and say, “Okay, what are we going to do about this?” I do that in my work. I’m learning in my life, too. That’s not to say I don’t have anxieties or stresses about it, but I do think I remain calm under these pressures.

You never want to see that look on both my parent’s faces. You never want to be the cause of their worries. I think that that happens naturally when you become a parent, I’m sure. But to this degree, I don’t think you ever want that.

My mom’s got her way of reacting [to] things. But I know with her, I was in good hands. We knew what we were going to do. It was going to get done.

With my dad, [it] was hard to look at him, and over the course of the next couple of months, too, because he knew what I was about to go through more or less. You don’t want that for anybody.

He said, “If I could trade places with you, I would ten times over,” and you just don’t want to hear that. I don’t want him to go through it again, too.

Treatment

Starting treatment after cancer diagnosis

It was about a month afterward. I got the confirmed diagnosis a few days after I was released from the hospital. I got [a] phone call from the surgeon.

I called my mom right away and said, “Okay, it is lymphoma.” There was a case where it could have been some lung disorder or disease that would still be treated with chemo, but it wasn’t cancer, so that was also a blessing in disguise. We said, “Well, we know lymphoma so we’ll take it.”

My mom immediately called the cancer center and said, “We officially have the diagnosis.” The surgeon was about to call the cancer center as well.

The cancer center called me back and said, “Our oncologist has an appointment open [in] 45 minutes. Can you go?” My mom’s at work, I’m at my house, and the cancer center was about 25 minutes away. I said, “I don’t know if we can get there. Let me call you back.”

I called my mom. I said, “She’s available in 45 minutes, but you’re at work, Mom.” My mom said, “No, we’re going. I’m dropping everything.” She had an amazing boss at the time who was so understanding and knew everything about my dad’s history. Anytime anything happened, she would just say, “I have to go,” and he said, “Okay.” That’s it, no questions asked.

Fertility preservation prior to cancer treatment

We wanted to do family planning. She knew I was getting married and she made it seem more important to me than I think I really realized. She explained that the drugs we’d probably go with could impact my fertility, but it’s not guaranteed. She felt that it would be important for me to take the time and do that.

Sometimes patients don’t have that time. She did say, “You do have time. I will give you time to do it. We think it’s probably best to do so.”

At the time, going through the whole process of freezing my eggs was a huge inconvenience to me because I just wanted to get better and then have a wedding. I knew every day counted because my hair, whatever it was going to be, needed to grow. I said, “The faster I’m done, the faster it will grow.”

I went to the first doctor that she recommended. They do egg retrieval in the office and although it is local anesthesia, they weren’t comfortable with where my mass was with being able to breathe properly. They didn’t think they had the proper facility to do that procedure for me.

She confirmed that I should go to a doctor at Cornell in Manhattan because they do the procedure in a hospital. I went to that appointment [and] then found out that their labs were closed for a full week so I had to delay the process. But once we started with the shots and everything, it was a quick 10 days.

Process of freezing eggs

The hardest part for me was the last couple of years. I know that I was in a very different circumstance than most people and I fully recognize that, too. I saw this as somewhat of an inconvenience because I had a bigger fish to fry in a way.

But looking back, it’s completely different because you don’t know what’s going on in that next stage. Because I have to go to two doctors and [the] time that it took to get through all those appointments, that was more of the inconvenience for me.

The whole process is very, very difficult. You become a nurse for yourself immediately.

I’m very fortunate [that] I was a beneficiary of programs that help with paying for those medications. But if you’re doing that because you want to start a family and you’re not a cancer patient, I cannot imagine how people pay for multiple cycles.

The stress of keeping your needles clean and becoming a nurse overnight is absolutely insane. Learning the exact dosages and getting everything in order is crazy. Then administering the shots.

I’m someone who doesn’t mind needles, but I couldn’t give myself the shot. I was living at my parents’ house at the time. We bought a house in the same town so my fiancé was living in the house and he would come over every night for dinner.

Taking care of your mental health

I’m in the suburbs of New Jersey. I have to go to my morning monitoring in Manhattan at 6 o’clock in the morning. A lot of mental work there.

I just had the mentality, “This is what you have to do. While it’s not the cure for what you’re actually sick with, you have to do it because this is your future.”

At that time, I had gone back to work basically after I was admitted and had my initial diagnosis. I was off a week or two to start the whole cancer process, but then I did go back to work for a few weeks before I officially started treatment.

I was just in a mode at that point: morning monitoring, back to my house, work, dinner, shots. I kept that routine pretty consistent and just added doctor’s appointments. That helped me keep focus and remain distracted from these bigger things that [were] happening. That’s just how my brain is wired.

My doctor said, “You can start to plan. I’m comfortable with you moving forward with your wedding.” I said, “It’s in April.” She said, “Yes, that’s fine. You should be good.” I said, “We’re inviting more than 200 people.” She says, “That should be fine.” She gave us the okay. That’s when it all started to sink in.

One night, I just could not sleep. I was naive for a while with the hair because I had a few nurses tell me they had seen some patients not lose all of it so I hadn’t shaved my head or even cut it at that point. I just basically looked like Gollum from Lord of the Rings. It was bad. I should have cut it a lot earlier.

But that was an area where they knew I could joke about my hair, but no one else could. I know my mom and sister were definitely texting each other, being like, “She still hasn’t cut it.” That’s fine. Talk about it between them.

I thought, “I don’t think I’m really going to have a lot of hair,” because I was imagining maybe a Charlize Theron little bob-pixie thing going on.

I was constantly Googling “stages of hair growth after chemo.” I wanted a month-by-month playbook of it. Not many pictures out there to give you what you could look like. Obviously, everyone’s hair is different. Constant Googling of “how fast you can grow your hair safely.”

One night, I could not go to sleep. I tried some of the anti-anxiety medications that they sent me home with and that didn’t help. I think it made me worse.

We were used to every three months checkups for my dad, but she said, “I don’t want to see you until June and you’re going to be married.”

I wasn’t sure if she did that because three months would be around March if I were to do that and maybe she didn’t want to ruin anything.

Now, my checkups are every six months. I don’t even do PET scans anymore. I just do CT scans. So to me, she’s not as worried about anything because you don’t have to do the more detailed scans.

Everything so far [is at] complete remission. That’s where I think I have scanxiety and mostly because of what we’re finding more now afterward.

She recommended [for] me to go to a neurologist, which has been something that I’ve been on a new journey with learning a new topic and health area itself.

Many people can have it. You might not have any symptoms, but I’m pretty asymptomatic, given how severe it has become where it’s caused some issues. It’s caused the syrinx in my spinal cord.

Something that you look back and say, “Yes, I had cancer, but if I didn’t have cancer, I would have never probably mentioned my migraines or tension headaches or I thought they were really normal.”

People tell you, “You’re a woman between the ages of 25 and 50,” which is a very broad age range by the way, “so it’s pretty common for you to have migraines.” You just named half the population so we’re all supposed to have migraines? If I had stuck with that, I’d probably have not gotten the surgery because I’d say, “Oh, I’m just a woman who gets migraines.”

That notebook is, for lack of a better term, your Bible. That’s your journal and that’s where you also can hold your medical team accountable.

In my IVF journey, someone dropped a term. They said, “Oh, by the way, did you know this?” I said, “No, I didn’t,” so I wrote it down.

The doctor said, “Not something you need to address today, but maybe something that you might want to address in the future or know about.” I wrote it down and that’s something that I need to go back and address as well.

Write down terms that you know and terms that you don’t know then research them. There is harm [with] over-researching, of course, as we all know. You go down the rabbit hole.

I read my scans and reports afterward. I’m lucky enough [that] I have a radiologist in the family. I could text her at any point and say, “What is this? What is that?”

Utilize the resources that you have or the people around you because, unfortunately, everybody has an experience with cancer. I’m not the first and I’m, unfortunately, not going to be the last. Everybody has an experience or a trick or something to do. I knew walking was my thing for treatments and staying whole [at] that point.

There’s probably a lot we could say to each other, but I don’t think we need to because we both just know. It’s not a great world to be around, but I think there’s a lot of beauty that comes out of it with the people that you meet [and] other experiences that you see.

We know that we are healthy. The other people that we see in that unit are sick people. We are very fortunate. I don’t think that goes unnoticed either where we were able to control what we could, whereas we know there [are] a lot of situations out there where you can’t. I think that goes unsaid as well, but we both know it.

For anybody who’s going through anything, whether it’s cancer or seeing an individual go through it, there are definitely dark times but after every storm, the sun does come out and shine. Trying to keep your head up in those times is helpful, no matter how hard it is.