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.

 

A Reflection on National Cancer Survivor Day: “I’m Cancer-Free, But I Don’t Like the Word ‘Survivor’”

By Katie DeMasi

Today, June 4th, is National Cancer Survivor Day. Personally, I’m not totally in love with the word “survivor.” Maybe it’s because I’m new to this whole thing. It’s only been a little less than two months since I was told I’m cancer free. When I think about survivors, I think about plane crashes or that show on TV. I think about luck. I didn’t beat cancer because I was lucky or because no one decided to vote me off the island. I beat cancer with the help of my healthcare team, especially everyone at Weill Cornell Medicine and NewYork-Presbyterian Hospital, modern day medicine, and positivity.

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Here I am on my last day of chemotherapy.

This is all just my opinion, and maybe as I get older and time goes on, I will understand survivorship in the face of cancer. Nonetheless, today is a day to commemorate those who have won their battles and to remember those who aren’t with us. It is a day of not only celebration, but also reflection.

I often think about what my life was supposed to be before I was diagnosed with Hodgkin lymphoma last August. I was supposed to be starting a job as a new nurse in New York City. I was supposed to move out of my childhood home. I was supposed to be living my life like any normal post-graduate. But to be honest, I’m kind of sick of talking about that. I’m more interested in what my life is and will be. I like to think about how my experience with cancer has changed me as a person. I think about what I have overcome and just how I did it.

I have learned the true meaning of the expression “YOLO” (You only live once.) and have included the word “yes” a lot more in my day-to-day life. And not just in the instances where it’s like, “Do you want to get ice cream?” or “Do you want to leave work early?” because those answers always have been and always will be “yes.”

I’m talking more about attitude and experiences. I can say with my whole heart that I have become a more positive person because of what I’ve been through, which might sound weird to some people. Why would something that was pretty awful cause me to have a better outlook on life? Well, it’s because I’m still here. Duh.

Chemo is bad. It is not fun. It is the enemy. But you know what they say: “Keep your friends close and your enemies closer.” So instead of complaining about having to wake up early to sit in traffic just to get to the hospital, and then get chemo dumped into my body, and then feel like a zombie for the next couple of days, I said “yes.” Yes, I can do this. Yes, I can get through this. Yes, I will take that Ativan before I leave the hospital so I can sleep in the car on the way home.

And now that chemo is done and has left me with a taste aversion to cranberry turkey wraps (I know, specific, but I ate one while getting chemo once and just the thought of it is making me gag.), I have carried over my “yes” attitude into my every day life.

I love sitting on the couch in my sweatpants binge-watching Netflix as much as the next girl, but there is a lot to do and see in this world. In this life. I’m not saying I plan on never working again and travelling the world (even though if I won the lottery today, I would probably be on a plane to somewhere new tomorrow); I’m talking about taking advantage of a beautiful day. Spending it outside instead of being cooped up all day. Doing something I’ve never done before, like going to a music festival or paddle boarding. Trying a new menu item at a restaurant I’ve been to a million times. Trying a new restaurant all together. Meeting new people. Spending time with family and friends and really being present.

KatieDeMasi_hotdog
Here I am outside of NYP after I got my clear scan results, eating my first hot dog in six months. Again, it’s the little things.

It’s the little things that I am saying yes to now. Things that maybe I would have ignored or pushed off before. I have stopped thinking about what the plan for my life was and started to think about what the plan is. Life threw me lemons even though I planned on making orange juice. So what did I do? I took those lemons and made a lot of lemonade during chemo because it really seemed to help with the nausea.

I can wish I never had cancer all I want, but that’s not going to change the fact that I had it. So, I have changed my attitude and learned to appreciate what I have now, turkey wrap taste aversion, lemons, and all.

Rally for Medical Research: Help Protect Funding for Medical Research

On April 8, 2012 thousands of individuals and nearly 200 partnering programs, including representatives from the American Society of Hematology (ASH), American Society of Clinical Oncology (ASCO), and American Association of Cancer Research (AACR) gathered at the Carnegie Library grounds in Washington, D.C. for the Rally for Medical Research. Here medical research supporters sought to raise public awareness over the importance of federally funded medical research. This need has been magnified by the March 1 sequestration mandated cuts to all areas of the federal budget, and a decade long decline in funding for the National Institute of Health (NIH).

As ASH wrote, this decline in money for medical research is not a new development:

“Research supported by the National Institutes of Health (NIH) is in serious jeopardy. NIH’s inflation-adjusted budget today is almost 20 percent lower than it was in FY 2003…Under sequestration, the NIH budget will be cut by an additional $1.6 billion over the remainder of fiscal year (FY) 2013. While the impact of these cuts may not be felt all at once or immediately, the harm caused to bio-medical research will be devastating- progress toward cures for deadly diseases and efforts to prevent costly chronic conditions will be slowed…”

Besides these  budgetary concerns, ASCO President Sandra M. Swain noted the human cost of such budget cuts, stressing the impressive strides made in cancer research due to federal funding:

“As a direct result of the federal investment in cancer research, we understand more about cancers than at any point in human history. This understanding of cancer at the molecular level has created unprecedented opportunities to slow the growth of cancer diseases. As a country, we can be proud that two of three people in the U.S. with cancer live at least 5 years after their diagnosis. This is up from one of two in the 1970s before the passage of the National Cancer Act. Since the 1990s, the nation’s cancer death rate has dropped 18 percent, reversing decades of increases. More than 13 million people in the U.S. are cancer survivors.”

Considering these new fiscal realities, the researchers and clinicians in the Lymphoma Program at Weill Cornell Medical College are adjusting accordingly. They will continue to do all that they can to deliver the latest in ground breaking research and clinical care.

Click here to use the ASH advocacy tool to contact your Representative and Senators about protecting medical research. Contact information for individual Representatives and Senators can be found here and here.