What I Wish Nursing School Taught Me About Having Cancer

Part 2: Reflection

By Katie DeMasi

Getting a cancer diagnosis at any age will rock your world. (See Part 1.) But as a young adult, it seemed to have hit harder. We are a forgotten age group in terms of cancer. When people think of cancer, they often associate it with the elderly or with children – nothing in between. And at this age, we think we are invincible. My life was looking pretty good leading up to this mess. How could anything stop me? But something did. Well, it tried to.

It’s kind of funny. Senior year of college, I took an oncology nursing elective. We didn’t learn about lymphomas, but I learned about chemo drugs and radiation and all of the fun stuff that comes along with them. We learned how to help a patient with everything from pain to hair loss to constipation. Because of that class, I was so prepared for chemo. I had learned about each drug that I would be given, including my anti-nausea meds, so I was prepared when I looked in the toilet after chemo and saw that my pee was red from the Adriamycin.

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The day I got my port out! At the hospital where I was originally diagnosed, nine months later.

But the class never touched on the diagnosis part of the whole cancer scenario. Like, someone had to tell the patient they have cancer, right? How do we help them cope?

I wish that we had spent time on that. Maybe I would’ve asked more questions or been more expressive. Maybe I wouldn’t have felt as angry and alone and betrayed by my own body as I did during that first month. Maybe I would have learned how to deal with such life-changing news at such a young age. But I also think that this is one of those lessons you can’t learn from a textbook. It’s about trial and error and figuring out what works best for you.

At such a pivotal moment in my life, I had to put everything on hold. And dealing with that was sometimes harder than battling the nausea or the exhaustion of chemotherapy. Even though there’s a pill for the nausea and I could sleep off the exhaustion, there wasn’t a sure-fire cope for the diagnosis itself.

Talking to people, especially others diagnosed with cancer who are around my age, helped me tremendously through the whole process. Writing and exercising also became great ways to relieve stress and compose my thoughts. These are all things that helped me get to where I am today.

I’m now three months cancer-free and on my way to start my much-anticipated, post-cancer life. It wasn’t the road I had planned to take to get here, but I never listen to the GPS anyway.

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. 

 

Dr. Sarah Rutherford Examines Necessity of Bone Marrow Biopsy in Follicular Lymphoma Clinical Trials

This is an excerpt of a recent Medscape article in which Dr. Sarah Rutherford comments on her research published in the British Journal of Haematology. Read the full story here.

Clinical trials in patients with follicular lymphoma (FL) mandate that patients undergo bone marrow biopsies (BMBs) at baseline and at subsequent points following treatment in order to monitor response. But how necessary are they?

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Dr. Sarah Rutherford

The biopsies are unnecessary in most patients, argue researchers reporting results from a  retrospective analysis of 99 patients with FL enrolled across 32 clinical trials at Weill Cornell Medical College. The study found that the mandatory BMBs resulted in response assessment change in at most 1% of patients and so concluded that they were not needed.

“In our patient-centered approach to care, we find that these biopsies are painful and anxiety-provoking. The procedures take time, add to healthcare costs, and are a hindrance for patients to participate in clinical trials,” corresponding author, Sarah Rutherford, MD, medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian, New York City, told Medscape Medical News.

“In routine clinical practice, we do not often do bone marrow biopsies in follicular lymphoma patients. Removal of this barrier can contribute significantly to increasing patient interest in clinical trials, which can provide them access to novel and promising therapies,” she added.