Tag: adolescent and young adult lymphoma

What It’s Like to Transition to Work After Cancer Treatment

By Katie DeMasi

Four days before I was supposed to start my job as a registered nurse in New York City, I received a surprising Hodgkin lymphoma diagnosis. One of the first and most difficult decisions that I had to make was to hold off on working while I went through chemotherapy. I had just graduated from college three months prior, studied all summer to pass my nursing board exam, and had a job lined up – and I felt like I was throwing it all away. I felt like cancer had taken away so much from me.

In April 2017, when my doctor told me I was cancer-free, I immediately thought about how my life was about to begin again. (Well, actually, the first thing I thought about was when could I eat a hot dog, which ended up being right after we left the hospital that day.) But after even more thought and a discussion with my doctor, I decided again to put off work. I had just gone through the hardest eight months of my life, and I felt that I deserved to enjoy my summer before going back to work.

And I did! I spent a lot of time with friends and family, I enjoyed myself at the Jersey Shore, I indulged in foods that I couldn’t eat throughout chemo, and I got to travel to Italy. It was a summer I needed. After so much worrying and anxiety during treatment, I could finally just chill out.

As summer ended and my tan began to fade, I got ready to start my job as a nurse. I was both nervous and excited. My life was about to change. I was finally doing what I wanted to do.

Aside from the transition from total beach bum to full-time employee, I had to adjust in other ways, as well.

I’m in a “New Graduate” program at work, so when I first started and my co-workers asked where and when I graduated, I would reply that I graduated in May of 2016 – a whole year earlier. Some people weren’t fazed by my answer, while some asked me what I did for the year in between. That’s when I got tongue-tied and felt self-conscious. The long, complicated answer would be, “I had cancer.” But the short answer I chose was that I took a year off. I don’t know why. I think it all comes back to me not wanting people to feel bad for me. Honestly, I don’t think anyone would; it’s just so hard for me to tell strangers my story…which is weird considering I openly blogged about it for a whole year.

There were moments in the beginning of the job when I was so angry that I had missed a year of nursing because I had to go through treatment. I kept thinking about how if none of that had ever happened, I’d be one year into my career and wouldn’t have to make up excuses about my hair or why I took a year off. I let myself feel bad for myself. I let myself think about the “what ifs.” But that didn’t help anything.

I finally put myself in front of a mirror for a little pep talk. Yes, if I had started working last year, I’d be over the jitters that come with being a new nurse. I’d be more settled into my life, and maybe wouldn’t be as stressed out all the time. But I also wouldn’t be the person I am now.

Katie DeMasi Scrubs

Over the past year, I learned what it was like to be a patient. I learned how much nurses can impact your day. I learned how to be positive and strong. Even though I wish I didn’t have to know what it felt like to be in a hospital bed, I’m glad that I do. I can’t always relate to everything my patients are going through health-wise, but I can relate to them emotionally. When they’re frustrated, I don’t just hand out an empty, “I understand;” I really mean it. When they’re happy or get good news, I celebrate with them, because I know what that feels like.

It is a blessing and a curse that I had to go through what I did. I sometimes feel like cancer took away a year of my life, stripped me of what I was supposed to be and who I was supposed to become. It made starting my career harder because I was nervous that I would forget how to be a nurse. And sure, maybe I forgot some names of drugs or proper techniques, but I never forgot how to actually be a nurse. That comes from within, not from a textbook.

I remind myself every day that I am better because of what I went through. This is who I am supposed to be, and I’m still waiting for what’s to come. I know it’s going to be something great.

Katie DeMasi was diagnosed with Hodgkin lymphoma at age 22 and treated by Dr. Lisa Roth, head of the Weill Cornell Medicine and NewYork-Presbyterian Hospital Adolescent and Young Adult (AYA) Lymphoma Program. Katie chronicled her cancer experience on her blog, Tuesdays with Katie, and shares how her diagnosis has impacted her outlook on life as a guest writer for the Lymphoma Program blog.

 

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. Lisa Roth Highlights Differences in Treatment Approaches for Pediatric Vs. Adult Hodgkin Lymphoma

SOSS_Roth_FurmanAt OncLive’s State of the Science Summit on Hematologic Malignancies, Dr. Lisa Roth, head of the Adolescent and Young Adult (AYA) Lymphoma Program at Weill Cornell Medicine and NewYork-Presbyterian, outlined some of the differences in treatment approaches between pediatric and adult patients with Hodgkin lymphoma (HL), a cancer commonly diagnosed in young adults in their twenties.

According to the National Institutes of Health (NIH), patients between 15 and 39 years of age are considered part of the AYA population.

“A patient in this age range can walk into a pediatric oncologist’s office or a medical oncologist’s office and receive vastly different treatment for the exact same diagnosis,” said Dr. Roth, highlighting the medical landscape’s current lack of and need for research in order to understand how to optimize care for AYA patients.

To compare and contrast the approaches, Dr. Roth broke down the components of the pediatric and adult treatment regimens for a standard case of Hodgkin lymphoma.

A HL patient treated under the pediatric regimen would typically receive four cycles of the chemotherapy drug combination doxorubicin hydrochloride, bleomycin, vincristine sulfate, etoposide phosphate, prednisone, and cyclophosphamide (ABVE-PC) over 12 weeks, as compared to the adult regimen of six cycles of chemotherapy drug combination doxorubicin hydrochloride, bleomycin, vinblastine sulfate, and dacarbazine (ABVD) over 24 weeks. About half of pediatric patients would receive radiation following ABVE-PC while very few adult patients would receive the same following ABVD.

Compared to its adult counterpart, the pediatric regimen has lower cumulative exposure to anthracycline, a drug class associated with cardiac toxicity that includes doxorubicin, as well as a lower dosage of bleomycin, a drug associated with pulmonary toxicity.

On the other hand, the adult ABVD regimen does not contain drugs etoposide or cyclophosphamide, both of which are associated with risk of secondary malignancies and infertility.

Dr. Roth explained that outcome improvements in adolescent and young adult patients are lagging behind those in both pediatric and adult populations – a disparity partially connected to the deficit of clinical and translational research focusing specifically on this age group. Other contributing factors may relate to differences in tumor biology in the AYA group that doctors do not yet fully understand, as well as the group’s tendency to delay physician consultation and to have limited healthcare access due to being under or uninsured.

Because the AYA population has such unique needs, they require a multidisciplinary team to guide them through each stage of their treatment process. The Weill Cornell Medicine/NewYork-Presbyterian Adolescent and Young Adult Lymphoma Program is composed of pediatric and medical oncologists, radiation oncologists, bone marrow transplant experts, fertility preservation specialists, and psychologists and social workers. The team also includes physicians who specialize in survivorship to allow for seamless care from treatment to beyond, which is specifically relevant for patients of this age range who are very likely to have many years of life to look forward to once cured of their disease.

WCM’s AYA Lymphoma Program is working hard to expand pediatric patients’ access to upcoming clinical trials and to develop trials specific to the AYA population.

For more from Dr. Roth on the intricacies of treating the AYA population, watch this video courtesy of OncLive:

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