My Name Is CC, and I Am a Cancer Survivor

“Hello, my name is CC, and I am a cancer survivor.”

I never thought that those words would sit together in the same sentence, let alone with a great deal of comfort and elbow room. I never thought that the word “cancer” would be applied to me at all. And I never thought that I would carry the words with me still, after it was all over. You see, I was hoping I would be able to tuck cancer away, someplace small and sacred, and be able to forget that I was ever that sick, forget that I ever did all that chemo, and forget that my life was forever changed.

But that’s not what happened. That’s not the story.

I was young. I was active. I was social. I was ambitious in my career and excited about the future. I was a “healthy” and “normal” 29-year-old when I was diagnosed with stage IV Hodgkin lymphoma in the sleeting February of 2016. After getting totally emotionally sidelined by the diagnosis, I completed six rounds (12 infusions total) of ABVD chemotherapy. That’s a total of 36 hours in the infusion center’s bustling waiting room, 72 hours in the chemo chair, watching 259,200 drips trickle down from the chemo bag into the big blue vein in my arm. That’s 12 lightly toasted bagels from the café downstairs, an infinite number of hand holds and arm rubs from my mother, and countless times the floor dropped out from beneath me to swirl with the walls.

WebsterSisters
With my sister, Ashley, in July 2016, before my final treatment.

When I tumbled out the other side into remission that sweaty August, I tried to pick up my life and career where I had left it, but it just wasn’t the same. Something was missing. It was like my doctor had sent me home with a stick shift when I only knew how to drive an automatic. Everything I had built for myself had seemed to disappear, sinking between my fingers. All of my dreams and my excitement for the future fell in a heap on the floor, having lost their glitter and gleam. I had to rebuild by finding and following my sense of joy, passion, peace and purpose.

My observations and perspectives surrounding my experience with cancer may ring true to anyone who has sat in that chemo chair, or who has shown up to a cocktail party with a fresh buzz cut. But more than a cancer story, my story is one of facing challenge and surviving. It is a story about the power of the physical body and the emotional self. It is a story about love. And most of all, it is story of hope, with a little bit of humor.

I want to tell my story in this blog post and in the next ones to come, with this community specifically, because this is where I came for help, too. Stay tuned. I can’t wait to share my story with you.


CCWebster_PhotoCC Webster is a recent survivor, patient of Weill Cornell Medicine/NewYork-Presbyterian (WCM/NYP), and author of So That Happened, a memoir that offers a candid reflection on her experience with cancer as a young adult. Diagnosed with Hodgkin lymphoma at the age of 29, CC completed treatment under Dr. John Leonard and his team at WCM/NYP’s Lymphoma Program. Now in remission, she is sharing her story, perspective, and insights in hopes of raising awareness of the disease and helping others through the battle – always with a little bit of humor. Her book is available on Amazon, Barnes & Noble, Goodreads, and through her site and publishing platform Webster Works. CC lives with her husband, Matt, in New York City.

WCM/NYP Partners with LLS to Host Blood Cancer Survivorship Event

Thanks to a valued partnership with the Leukemia and Lymphoma Society (LLS), Weill Cornell Medicine and NewYork-Presbyterian Hospital (WCM/NYP) were proud co-hosts of “Life Beyond Blood Cancer,” a free educational event for patients and caregivers. The program explored various aspects of survivorship as experienced by people with lymphoma, leukemia, myeloma and other blood cancers.

The event drew in nearly 100 members of the New York metropolitan area’s blood cancer community for an evening of shared information and inspiration. Speakers included a range of experts across the WCM/NYP cancer care team, as well as blood cancer survivors who shared their experience and insight into living with Hodgkin lymphoma, chronic lymphocytic leukemia (CLL) and acute lymphoblastic leukemia (ALL).

Here are a few highlights:

WCM/NYP Lymphoma Program Chief Dr. Peter Martin explained that innovative advancements in personalized medicine, immunotherapy, and targeted therapy have positively influenced blood cancer survival rates. Almost 1.5 million people in the United States are living with lymphoma, leukemia or myeloma. Dr. Martin noted that as patients are living longer, more clinical attention should be focused on treating the whole patient and his/her needs, as opposed to treating just the cancer cells within the body.

Alan Astrow, Chief of Hematology and Oncology at NewYork-Presbyterian Brooklyn Methodist Hospital, explained that a cancer diagnosis can affect a patient’s life in ways that exceed the strictly medical, and many patients welcome discussion about their spiritual, religious and existential concerns. Dr. Astrow advocated for increased communication between physicians and patients regarding spiritual needs, since a clear understanding of a patient’s hopes, fears and values can provide guidance when making decisions in the face of medical uncertainty.

Kelly Trevino, PhD, a clinical psychologist at WCM/NYP with a specialization in psychosocial oncology, discussed strategies for managing the anxiety that often accompanies a cancer diagnosis. Threatening situations like cancer can lead to worry and nervousness, muscle tension, shortness of breath, tingling/numbness and difficulty concentrating – all of which can have a negative impact on quality of life. Coping strategies include deep breathing, progressive muscle relaxation, pursuit of distracting activities and even scheduled “worry time” to prevent anxious thoughts from infiltrating the entire day.

Three survivors across varying ages and diagnoses then shared the ups and downs of their treatment and post-treatment journeys and provided the audience with insight into life beyond cancer.

We at Weill Cornell Medicine and NewYork-Presbyterian Hospital are honored to be able to offer educational programs and resources to people affected by cancer, and we are committed to doing our best to address the needs of our patient community throughout all stages of the cancer journey.

LLS
The event concluded with an interactive question-and-answer session between the speakers and audience, moderated by WCM/NYP outpatient oncology social worker Susan Marchal, LCSW.

 

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.

 

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