Meet Grey Zone Lymphoma Grad, Jenna Benn Shersher!
Name: Jenna Benn Shersher
Age Enrolled: 29
Major: Stage 2 b, Grey Zone Lymphoma
Primary symptoms you had experienced prior to diagnosis: Flu like symptoms, weight loss, fatigue.
What symptom(s) lead you to go to the doctor?: In February 2010, I was hospitalized for what they thought was viral meningitis. I was released the same day and went home to rest. A few months later I went in to see an orthopedist because I thought I had a pinched nerve in my neck. They gave me steroids, and a few days later the pain resolved itself. I then noticed that I was losing weight without trying and was sleeping 10-14 hours a day when I was used to functioning on 7 hours of sleep. During a 6 month period, I saw my internists for what presented as flu like symptoms. I went back to the orthopedist 4 months after seeing her with neck pain, when I was having trouble taking deep breaths.
He eventually ordered a chest CT and found a number of large masses in my chest and neck.
What did you think you understood about cancer prior to your own diagnosis? I thought that cancer was an old person's disease. I was lucky that I had never had to see the disease up close and personally until I was diagnosed with it. At the same time, while I was shocked by my own diagnosis at the age of 29, in a strange way and almost intuitive way, I knew it was coming.
What (if anything) was different about what you thought you knew about cancer after your diagnosis? Everything was different after my diagnosis. I remember desperately trying to find my former self during the months of treatment and recovery. I was desperate to get back to who I was. I was unwilling to accept that I had been changed by the disease. After about 6 months of searching for my former self, I started to embrace what I had been through and who I had actually become. In many ways, the intensive treatment, and time spent facing my own mortality, allowed me to live much more in the moment. I cherished basic things like wiggling my toes, having the strength to make it to the bathroom, and manage a flight of stairs. It forced me to slow down, to take deep breaths, and to tell those that I love the most how much I care for them. The experience in many ways stripped me of my ego and allowed me to become my authentic self. Cancer was by far the most transformative experience I have ever endured. While it was terrifying, awful and relentless, it also provided me with so many opportunities to make an impact. I am in many ways thankful for my experience with her.
Courses completed: I endured 720 hours of intensive chemotherapy during in patient hospitalizations. I developed sepsis at the end of my treatment which nearly took my life.
What you’d like other men (and women) to know about your specific type of cancer: Grey zone lymphoma is so rare that it doesn't even have a proper name. There are less than 300 cases documented worldwide. The first clinical study came out in 2015. Up until then, grey zoners like myself were reliant on a wikipedia definition. Six years ago, when I was diagnosed, I was desperate to connect with others that had my diagnosis. I created a Facebook group that started with five people and has grown to over 200. I am so happy that we now have a space to share, connect and heal.
Any helpful tips or tricks for other people navigating a diagnosis (i.e. chemo tips, surgery tips, radiation tips)? Build your squad. I had a team of cheerleaders around me that I employed when I absolutely needed it. It is impossible to go through a cancer diagnosis alone. You have to be ok asking for help. In some ways cancer forces you to become incredibly selfish. It is a disease that forces you to turn inwards and focus on what you need to get better. I hated how selfish and self absorbed I was forced to become in order to get through treatment. Once I was better, and had some space from my experience, I made the commitment to help others that had been touched by this disease. I was determined to find meaning in the suffering, and pay it forward for others. There are blessings and gifts that can come from a cancer diagnosis, you just have to open your eyes to see them. As for treatment: avoid synthetic marijuana, its the absolute worst. I found fudgsickles did the trick when I had terrible mouth sores that prevented me from eating. Also- find a hobby! This is a great time to reconnect with your childhood self. I never knew that I loved to write, but it became a tremendous outlet for me and in many ways my primary coping mechanism for dealing with cancer. I also started dancing again, in a fearless way that only cancer survivors can.
Anything you wished you knew prior to diagnosis? That there are others out there, just like me, that get it. I found along the way that when you share, the world really does open up. Retreating is not the answer. In being vocal and bold about my diagnosis, I was able to connect with others and educate the community.
I would add- that for newly diagnosed patients they should ask their doctor about what life can look like after cancer. Exploring fertility options before treatment is something that all doctors should be discussing with their patients. For me- going through fertility treatment, changed the way I fought the disease. It allowed me to think about what life could look like down the road, as opposed to just thinking about whether or not I was going to live or die.
Choosing hope can change the way a survivor goes through treatment!
Has a cancer diagnosis changed your outlook on life? If so, how? It has made me love deeper, live more in the moment, and love road rage. I know that sounds ridiculous but while I was in treatment, I wanted so badly to stress about nonsense. I was focused on heavy issues, that I never thought I would be able to engage in small talk, or stress about crap that doesn't matter. I remember the first time I experienced road rage post treatment, and I saw it as a mini victory! Regaining a sense of normalcy is possible- it is just a new normal.
Do you experience post-diagnosis anxiety of any sort? If so, any advice or tips on how to manage it? I still have scan-xiety - even 6 years later. I love seeing my oncologist, but I also hate it. I find that I am irritable a few days leading up to check ups. My family and friends know that it is usually a loaded time, and they know to steer clear. I also make sure that I pamper myself and take time for me. It gets easier as time goes on, but I am not sure I ever want it to not phase me. In some ways the anxiety leading up to the check ups forces me to acknowledge and honor what I have been through.
Did you learn anything about yourself? I learned that I am a hell of a lot stronger than I thought I was. I learned that from every hardship comes an opportunity to learn and grow. And finally, that there can be meaning in suffering. Since I finished treatment in 2011, I created an organization called Twist Out Cancer which focuses on the emotional side of a cancer diagnosis through creative arts programming. We have impacted over 73,000 individuals touched by cancer in the U.S. and Canada. Cancer not only changed who I am, but it changed my life course. I have found tremendous meaning in being able to give back to the community of which I'm a part.
Check out Jenna's sweet dance moves and learn more about her fantastic organization, Twist Out Cancer! Share your twist on cancer by using the hashtag #twistoutcancer on social media!