What It’s Like to Be Diagnosed with Lymphoma at 22

Part 1: My Story

By Katie DeMasi

Soon after the excitement, and some dread, of graduating college with a nursing degree subsided, I quickly realized that the real world was coming at me full force. Sure, I could name a thousand different medications and their uses and show you how to properly chug a beer, but I had no idea how to budget a grocery list or how much I should be putting away in a retirement account. College taught me things that would help me in my career as a nurse, but it failed to prepare me for everyday life as a real, adult human being. And it certainly did not prepare me for a cancer diagnosis.

It all started with some strep-like symptoms in the beginning of the summer, but when the strep test came back negative and the symptoms cleared, I never really gave it a second thought. Until I noticed a lump at the base of my neck that wouldn’t seem to go away.

After a couple of weeks of doctor appointments, a round of antibiotics, and some scans, I woke up from an anesthesia-induced sleep to the surgeon telling my mom that he was pretty positive the biopsy taken from the lump in my neck showed Hodgkin Lymphoma.

The next day, in a little bit of denial (OK, a lot), I went looking for an apartment in New York City, as I was supposed to start my job that following Monday. I acted as if nothing had happened, like that huge band-aid on my neck wasn’t there. Because I felt fine, because an oncologist had not given me a confirmed diagnosis, because this couldn’t be happening to me. I was only twenty-two.

The day after, we met with the oncologist at our local hospital. She confirmed what the surgeon had told us two days before: It was Hodgkins. My mom’s first question was in regard to fertility. Mine was about work. After discussion, the doctor advised me that because I was in a good position where I hadn’t started my job yet, it would be best to hold off on working. Hospitals are full of sick people, after all, and I wouldn’t be able to get healthy if I was putting myself at risk.

Life changed pretty quickly after that.

I had to inform my job that I had to postpone my start date until I finished chemo, which could be anywhere from three to six months, depending on the stage of the cancer. I had to tell the girl I was going to live with what was going on and that she would need to find another roommate. We had to schedule appointments for scans, a bone marrow biopsy, lung and heart function tests, meetings with the fertility doctor, and a day to get my port placed. We also scheduled a second opinion at Weill Cornell Medicine and NewYork-Presbyterian Hospital, where I met Dr. Lisa Roth and decided that it was the place where I wanted to receive treatment.

Even with the stress of all of this needing to happen before I could even start chemo, my biggest concern was telling my friends.

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One week after my diagnosis, my friends got together and surprised me with tickets to a Mets game.

I don’t like people to worry, and I didn’t want to burden them when I didn’t have a definite answer as to what was happening. On the outside, I was completely healthy. I acted normally, going to a graduation party the weekend before my biopsy and having a sleepover with one of my best friends the night before that life-changing day. No one was suspecting this kind of news. We weren’t supposed to know someone going through this. We were too young. Our lives were just getting started. But after telling my friends, the pit in my stomach from keeping the secret subsided, and their support helped me get through the craziness of the whole experience.

That first month was insane, to say the least. I had some sort of appointment pretty much every day. I don’t think I fully processed everything that was going on until Labor Day Weekend, when I was unable to go anywhere or do anything fun. I was on a tight schedule with my hormone medications, and it just wasn’t possible to bring along my medication (that needed to be refrigerated), needles, alcohol swabs, and gauze pads. So while swimming alone in my pool, bloated beyond belief because of the hormones, and feeling a little emotional (also probably because of the hormones), I began to cry.

I hadn’t even started chemotherapy yet, and this sucky diagnosis was taking over my life. I was angry with my body, with myself, with whoever is up there calling the shots. I was miserable in those first couple of weeks. Bound to appointments and medications. I thought that my life was over.

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I had a lot of visitors during chemo! There was probably only one week where it was just me and my mom there.

But after everything related to my reproductive needs was done, things started to look up. I started to be positive and strong and happy again.

When my friends starting moving into the city and starting their jobs, I did feel a tinge of jealousy at first. I was so happy for them, but a part of me felt like I was being left behind. However, I put everything into perspective. As they moved into their apartments, I re-decorated my room at home. As they crossed off weeks at work, I crossed off weeks of chemo. We were accomplishing things in different ways. I stopped focusing my energy on the things I was missing out on, and instead focused on the things I was doing. I was kicking cancer’s booty, day by day.

Check out the next installment of this two-part series, in which Katie reflects on what she wishes she learned about cancer before she was diagnosed. 

 

Managing the Stress that Comes with a Lymphoma Diagnosis

trvinoBy Kelly Trevino, PhD

Being diagnosed with lymphoma is a jarring and life-changing experience. As one person stated, “the moment I heard the diagnosis everything changed. I left the hospital and the world was the same but it felt different. I felt like everyone else kept on going with their regular lives but I was in my own personal fog where time was slow.”

The first weeks and months after being diagnosed with lymphoma can be very challenging. You are given lots of information about lymphoma, the treatments, and the side effects. You meet oncologists and nurses. You have blood drawn. You sign forms. You may start treatment. It stands to reason that anxiety and stress are high at this time.

Anxiety consists of nervousness and worry and can manifest itself in physical symptoms like muscle tension and difficulty breathing. Anxiety is a normal reaction to a stressful event like being diagnosed with lymphoma and many people with lymphoma experience anxiety and worry after being diagnosed. While anxiety in this situation is normal, it is also uncomfortable and can make daily life difficult.

There are many effective ways to manage anxiety. Below we offer a few strategies to help, but this is not an exhaustive list. Different strategies work for different people. You may find other strategies that work better for you. Even the most effective coping and anxiety management strategies will not make anxiety disappear completely. Lymphoma is stressful and anxiety is normal in stressful situations. Here we offer three tips to help you manage anxiety and get through each day more easily:

  1. Take a Deep Breath

First, do not underestimate the benefits of taking a few deep breaths. Anxiety activates the body to prepare us to protect ourselves from a threat. This activation is helpful if we need to jump out of the way of an oncoming taxi. However, it is not helpful when we are trying to fall asleep or concentrate on what the oncologist is saying. Deep breathing helps calm the body which then reduces feelings of nervousness.

To take deep breaths, breathe in through your nose for two or three slow counts (imagine smelling a flower). Then, breathe out through your mouth for two or three slow counts (imagine blowing out candles). The breaths should be slow and controlled, but you should not feel like you are straining or holding your breath. You may find it helpful to say a calming word to yourself (“relax”) as you breathe out. One benefit of deep breathing is that you can do it anywhere and anytime. No one even knows you are doing it!

  1. Focus On One Day at a Time

A diagnosis of lymphoma can be overwhelming. When feeling overwhelmed, some people find it helpful to focus on one day at a time. What do you need to accomplish today? Are there decisions you need to make or tasks to complete now? If one day feels like too much to handle, focus on this morning or the next hour or the next minute. Every journey is a series of steps. Taking one step at a time can make the journey through lymphoma feel much more manageable.

  1. Get Support that Matches Your Needs

Support from others can be vital when adjusting to a lymphoma diagnosis. Different people need different kinds of support. What someone else experiences as supportive may not be helpful to you. You may even find that what you need from others changes over time. What kinds of support do you need from others? Is there someone in your life who is able to provide that support? Asking for help from others can be difficult, but you may find that you have people in your life that want to help, but are not sure what to do. Telling them what you need gives them clear instructions and ensures that the support they provide is helpful to you.

Dr. Trevino is an Assistant Professor of Psychology in Medicine at the Center for Research on End-of-Life Care in the Division of Geriatrics and Palliative Medicine at the Irving Sherwood Wright Center on Aging and NYPH Inpatient/Outpatient Palliative Care Consult Team.