Introduction

I grew up in the Tri-State area. I work for a large communications firm in New York City and live in Jersey City with my fiancé and dog.

Pre-diagnosis

Initial Symptoms

The journey started in the summer of 2022. It began with a tickle in my throat, which was very vague, and I attributed it to either allergies or the dry air in my apartment.

After a while, that tickle turned into a cough, which didn’t go away. After a few weeks of having that cough, I decided to go to urgent care. They thought I had bronchitis, which I thought was likely. I figured whatever I had probably turned into bronchitis. I was working a very high-paced job, was very career-oriented, and dismissed a lot of my initial symptoms.

The night sweats got progressively uncomfortable to the point where I was waking up in the middle of the night to change my clothes. But I attributed that to some infection that had gone on for too long and now becoming severe. I didn’t even consider cancer.

My mom pushed me to ask for a chest X-ray from the urgent care doctor. The radiologist thought it was pneumonia, but the doctor scared me when I was told that it could be tuberculosis. I decided to get a second opinion.

Getting a Second Opinion

I sent the X-ray to my cousin, who’s a radiologist. She said the X-ray would be a lot worse if I had pneumonia. She pushed me to get a CT scan. I went to my primary care doctor and got a CT scan, which immediately revealed a large mass in the center of my chest.

Reaction to the Diagnosis

It was a crazy out-of-body experience for me. I would say I was somewhat primed for it. I was with my fiancé at the time, but I don’t know how primed he was for it. I remember seeing his face and the color draining from it. I immediately had an out-of-body experience and emotionally shut down in a way.

I knew that I needed to go to the ER so I didn’t have time to process what it all meant. The moment I received the news, I was shaking.

From that point on until the day I heard I was in remission, every moment of my life was lived minute by minute. I remember thinking to myself, I’m going to the ER. I’m going to the front desk. I’m telling them what’s going on. I’m sitting in my chair, waiting. They’re going to take me back to the ER.

I was living moment to moment, doing my best to not anticipate what was next. My life went from everything being planned to getting through by the minute, by the hour, or by the day. It was a big mindset shift for me.

In the initial moments of my diagnosis, I distinctly remember thinking that this couldn’t be happening to me. This is too insane. I was supposed to get married in seven months.

I thought that I couldn’t do this. I have an extreme fear of needles. How am I going to make it through knowing that they’re going to need blood work? I actively avoided needles for a long time and any blood work that wasn’t necessary. That’s how bad my phobia was so that was one of the main things that I discussed with everybody because that was tough for me.

Additional Testing

Following the biopsy, I had to have additional CT scans of my head, neck, and stomach. I also had to have a bone marrow biopsy to confirm the staging to see if the lymphoma was anywhere else.

The bone marrow biopsy was done under anesthesia. I was a little sore afterward and a little nauseous from the anesthesia, but otherwise, it was fine.

Getting the Official Diagnosis

After all of that testing, I got my final diagnosis a few days later. It was confirmed that I had stage 2 PMBCL or primary mediastinal B-cell lymphoma.

Honestly, it took me a while to figure out that this was even going to be a part of the journey, but upon hearing what my options were, I was firm in my decision. That being said, I was also very scared because I knew it involved a lot more needles. Of course, that wasn’t fun, but I was no longer operating in what I wanted, but more so what I needed to do.

I went to the fertility clinic every day for blood work. They would monitor me and how my eggs were growing because they gave me hormones to stimulate my eggs so they could retrieve them.

I was doing hormone shots in the evening and going to the clinic so they could check on how my eggs were growing. After the clinic visit, I would go down to the cancer clinic where the doctor would check me. They were afraid that my cancer would grow since it’s a very aggressive lymphoma, that my symptoms would get bad again, and that I would need to start chemotherapy immediately.

I would go to the fertility clinic and then the cancer clinic every morning to see my doctor and get checked out. Then I would get myself an emotional support bagel and lay around all day and think about what was going on.

The fertility preservation process was not that bad. Besides some minor discomfort and minor bloating, it was very manageable.

Embryo Freezing

They were able to retrieve seven eggs. My fiancé and I decided to fertilize all seven eggs in the hope of creating healthy embryos because that’s what my doctor recommended. If I were to freeze seven unfertilized eggs, they might not survive the thawing process. Embryos are a little more robust. They’re a little tougher so my doctor recommended trying to fertilize all seven eggs.

We had to wait a few days to find out how many of those eggs were fertilized and how many of those fertilized eggs turned into big enough embryos for us to freeze. We ended up being able to freeze five embryos, which is pretty good when you consider that we fertilized only seven eggs to get five good-quality embryos. That was a success.

Truthfully, I was so happy with how the experience went. Knowing that I had five embryos in storage was a big motivator for me and gave me a lot of hope that even beyond surviving cancer, I would still be able to have a family. I was thankful to be able to have that possibility.

Treatment

Discussing the Treatment Plan

Everything was moving pretty fast. I celebrated my birthday in the hospital. I was diagnosed on September 29th and turned 29 on October 1st, which was a very surreal experience to celebrate my birthday in the hospital during this time.

My doctor was very communicative about my treatment options, even though we were still confirming what type of lymphoma I had and what the staging was. He went through the options of either doing R-EPOCH chemotherapy or R-CHOP chemotherapy, both of which are similar to each other.

R-EPOCH is what he was leaning towards. He explained that R-EPOCH was going to be done inpatient at the hospital for five days. I would get chemo for five days, wait for three weeks, go back for the next round, and do that cycle for six rounds. R-CHOP would be outpatient.

After receiving my diagnosis, he said that I was going to do six rounds of R-EPOCH chemotherapy, which equated to about six months of treatment. I would be in the hospital receiving chemotherapy, come in to see him a few days later, and then two weeks after that, be back in the hospital for my next round of chemo.

The anticipation of side effects was worse than any side effects that I felt. I had a lot of anxiety about what I would feel and what I would be going through, but none of my worst nightmares came true except one.

The side effects were quite manageable. The hair loss was something I knew was a given upon diagnosis, so I tried my best to not focus on it. I didn’t want to give the thought of losing my hair power. What I was most concerned about was losing my eyebrows, which was tough.

After the first round of chemotherapy, I started to lose my hair, which was traumatic — I don’t think there’s any way that it can’t be. I cut my hair short before starting chemotherapy with the hope that it wouldn’t be as apparent when it did fall out, but it fell out in clumps in the shower. It was constant. I woke up with hair on my pillow. It was very hard to go through that process.

Once I was able to shave my head, it felt so much better because then I wasn’t constantly dealing with hair falling out in clumps. I bought a lot of head wraps and wore a lot of beanies. I was going through treatment during the winter time mainly, so I was able to do that. I tried to not give it so much power and kept telling myself that it would come back.

Post-Treatment Scans

I finished treatment in February 2023. We were feeling very confident about how things were and how the treatment went. I had a good midway scan. They saw that the mass in my chest was shrinking a lot. Everything was moving back into place, as my doctor said. Things were clearing up so it was a good sign that the chemotherapy was working, which was great.

Since I had residual disease, I was going to be on this ride for a lot longer and I didn’t know what to expect. My doctors were very encouraging. Considering that I was so young, didn’t have a prior history, could handle the chemotherapy, and that it would probably work, I had a good chance of being cured.

We were holding on to that hope, but when I received the news that there was still residual disease, that was truly crushing not only for me but for my family and my fiancé who were on their own journeys considering my cancer diagnosis. It was heartbreaking news for all of us. There were definitely a lot of tears.

My team very quickly referred me to a larger cancer hospital and connected me with the CAR T team there. They had already gotten the ball rolling for me to do CAR T-cell therapy.

Once I met with my CAR T-cell therapy team, I felt like I was in very good hands. There were a lot of questions about whether or not I needed CAR T-cell therapy or additional radiation to clear up the small spots that were left over. There was a lot of back and forth.

My case was presented to a lymphoma tumor board where multiple doctors weighed in. I also got second and third opinions on CAR T-cell therapy from other oncologists. After speaking to the other doctors, I felt very confident in moving forward with CAR T-cell therapy because there was a consensus that it was the next step for me, with some radiation in between.

Once I knew that CAR T-cell therapy was the best next step, I mentally was ready for it. You don’t have a choice, so you have to be ready. I felt very confident going into it.

If you have good veins, they can do it through the peripheral veins in your arms. I have small veins that are very hard to access, which is why I have needle phobia. They had to put a catheter in my neck. It’s not comfortable. However, I was given lorazepam and I told myself that I could get through this. They put the catheter in my neck specifically for T-cell collection and then immediately after, they would take it out.

We hit our first stumbling block. My neck catheter wasn’t working so they had to stick my veins. Luckily, I had a good team of people who were able to find a vein and complete the T-cell collection.

The T-cell collection day is pretty long. You’re sitting in a chair and can’t move because you’re connected to the machine. My advice is to bring snacks, your tablet or laptop, and be prepared to watch a lot of Netflix. I was living day to day, so I knew I could get through it.

I didn’t experience any side effects after the T-cell collection other than being a little bit tired. During the collection, you might feel that your body or lips are tingling, which has something to do with the calcium level in your body, so they will give you some calcium to help supplement but it’s not uncomfortable or painful. It’s just a weird feeling.

It was a little bit crazy for me but, again, through the journey and the experience, I told myself I could get through this. All’s well that ends well. I was focused on the mission and the mission was to get my T cells and send them out.

You first receive three days of lymphodepleting chemotherapy, which is a low-dose chemotherapy done in the hospital as an outpatient. I was able to go back to the hotel that I was staying at nearby.

After three days of chemo, they gave me two days to rest before the infusion. I felt crappy after. It made me much more nauseous. I did not feel good. At points, I thought I could faint or lose consciousness. I felt pretty crappy during those two days that I wasn’t receiving anything. They do their best to give you what you need, such as anti-nausea drugs.

When they were pushing the CAR T cells in, I felt a garlicky or cream corn taste in my mouth, which is something that happens. It was fine though. I didn’t mind or anything.

Overall, the CAR T-cell infusion was not a big deal. They monitor you for the rest of the day. The infusion itself took less than 30 minutes. They monitored me for a few hours and upon discharge, I went back to the nearby hotel that I was staying at.

You have to come back to the hospital every day for regular blood work. They’ll ask you a bunch of questions because CAR T-cell therapy has two main side effects: cytokine release syndrome (CRS) and neurotoxicity.

CRS is noted by high fevers and other symptoms. Neurotoxicity is when your handwriting gets messed up, you’re not able to answer questions, your speech is jumbled, etc., so they were testing me for those things.

After five days in the hospital, they were able to discharge me. I went back to the hotel because I still had to be monitored closely before I could be sent home.

While it certainly wasn’t easy, I wouldn’t say that anything that happened was unexpected. They prepared us for the side effects that I could experience. The most anxiety-inducing was waiting, being in the hospital, and not knowing how bad it was going to get.

I remember focusing hard on the tests that they would give me in terms of assessing my mental status because I was really scared that, at any minute, I could be losing it. But they assured me that I would be okay and, luckily, everything was so.

Follow-up Protocol

After my CAR T-cell therapy, which was a month total from the time I got my infusion to when I was allowed to go home and started seeing the doctor on a less frequent basis, they determined that I was safe to go home. I took it easy and took things day by day.

I had a PET scan scheduled at the 60-day mark. The results showed that I was 100% in remission. There was no evidence of disease.

The first thing my fiancé and I did coming from the doctor’s office was go to the beach. It was a wonderful moment and a real first moment of victory where we were able to breathe for the first time in a little bit. We were sitting by the ocean, having lunch, and then we saw dolphins jumping. You don’t see that often in New Jersey, so we took it as a good omen for things to come.

It was a turning point and the biggest moment for my mom, honestly, who was my main caregiver during the entire time. She said the last time she was this happy was the day that she gave birth to me, so it was an emotional moment.

Words of Advice

Honestly, what helped me was taking things day by day, moment by moment, whatever time increment to get through difficult moments. I would tell myself, “I just need to get through these 10 minutes. If I can get through 10 minutes, I can get through 20 minutes. If I can get through 20 minutes, I can get through the next hour.” During those tough times, when I was in pain and wasn’t feeling well, and when I was struggling, that’s what helped me get through.

It’s important to have a good support system. I had a lot of cheerleaders in my corner, mainly my family, my fiancé, and my fiancé’s family. They were there for every step of the way. Being able to lean on those who are there to support you is huge.

If you don’t have people close to you to support you, definitely lean into the resources that are provided to you. There are a lot of cancer centers that provide free social workers for cancer patients. I saw a social worker and she was very helpful. She had a lot of experience and, based on her experience with cancer patients, understood what I was going through. She helped me through some of the tougher moments as well.

Connect with others who are going through the same experience as you. It doesn’t have to happen all at once. It’s certainly a journey. Upon diagnosis, I wasn’t ready to talk to anyone, do anything, or reach out to anyone. But as I went through the process, I became more and more comfortable about reaching out and it was a huge help to me. Don’t be afraid to reach out and ask for help where you need it.