“ Giving advice for newly diagnosed is difficult since I was diagnosed so long ago and as a child. I think that I would try to surround myself with people who love me and be honest about how I’m feeling. I’d call all doctors that are friends and ask for their advice.
Beth Rosenthal is an “endurance mAss Kicker”. This remarkable woman was diagnosed with a “benign” pediatric brain tumor at age 11 and is now a champion for “non-malignant” brain tumor awareness. She created the organization It’s Just Benign , a website for “benign” brain tumor survivors and their loved one’s. As a pediatric “benign” brain tumor survivor she offers a very unique perspective on mAss Kicking. We are happy she took the time out of her busy schedule to answer a few questions for us.
mK: What/ when was your diagnosis? How did you find out about your diagnosis? How old were you?
BR: I was initially diagnosed with a cerebellar astrocytoma. After the 1st operation, the diagnosis was changed to a brain stem glioma. The year was 1985 and I was 11 yrs. old. I had 2 operations and radiation treatment at NYU. My mom and I lived in NY during the 6 weeks of radiation treatment.
I was seeing a speech therapist to correct a lisp and she suggested to my mom that something was wrong with me. My voice became very nasal and my mom would always say “Blow your nose”. My voice sounded high pitched and stuffy. My mom also knew that I wasn’t well because she took me to several doctors before getting diagnosed. I remember being told that I would need surgery. I had no idea what a brain tumor was, but I knew that it was serious. I felt my parent’s anxiety. I was scared.
mK: Do you remember what your symptoms were?
BR: From the time that I was 6 yrs. old I was nauseated. I went to the school nurse daily for several years, but I wasn’t taken seriously. I never threw up however, I became very pale, very weak, I lost a lot of weight, and I hiccuped non-stop. I continued with my jazz and gymnastic lessons, but I looked and felt as if the slightest gust of wind could knock me over.
mK: We saw your video , so besides meeting Regis and Cathy Lee, did you ever get to meet Ricky Schroder or Kirk Cameron? Just curious…
BR: My dad got me involved with Make-A-Wish. First, before my surgery, Ricky Shroder called me. That was a very exciting day for me. Then after my two operations and radiation treatment, my dad and I flew to Beverly Hills for 10 days. We saw four taping of television shows and had a very nice vacation. I’ve met the cast of Silver Spoons, met Tony Danza (Who’s the boss?), and saw the taping of that show. I’ve met Bruce Springsteen, etc. and numerous other celebrities. It’s all very bittersweet because I’ve met them because I was so sick.
mK: Never thought of it that way. What celebrity would you want to meet now?
BR: The celebrity that I’d want to meet is Drew Barrymore. Although she never struggled with our issues, she’s had her share of hardships from the time she was little. I believe that she beat alcoholism at a very young age, didn’t have parents to rely on, etc. She’s doing so well for herself and she seems like such a real person. I also love “Never Been Kissed”.
mK: OK, lets be serious again… Why did you start “It’s Just Benign”(IJB)?
BR: I started IJB because I felt like no one really understood how my brain tumor/my treatments affected me. There were no support groups then and the internet wasn’t used then either. I felt alone and very different than everyone. Some people couldn’t understand that my effects were permanent and because I looked “normal” others assumed that I could do everything they did. Eventually I became so angry because another brain tumor support group that I was a member of wouldn’t discuss some of the differences between benign and malignant tumors and how they affect survivors. It really was my responsibility to bring it up, but I couldn’t at the time. I also could not find any sites online that was only geared towards benign brain tumors. So IJB started out of anger and my necessity for a site for just benign survivors. I do believe that this is the first site ONLY designed for benign brain tumors.
mK: Yeah, there is definitely a need for “benign” brain tumor awareness. The quality of life after treatments for patients with “benign” brain tumors is significantly altered! They need to be taken more seriously. We appreciate what you are doing! Who is your hero/heroes/ who do you look up to?
BR: My hero is my mom. She was the only person who stuck with me from my diagnosis to having my facial pain treated. Family was there for the operations and treatment, but disappeared when I returned home. No one was there to see if I’d regain my balance or use my left arm. And no one, except my mom, understood how hard life became for me once my pain started. Life became unbearable for me when my chronic pain started at age 16. Somehow my mom continued working full-time, took me to the emergency room of our local hospital weekly at three AM (when the pain was worst), and continued doing all of the other duties of a single mom. She is the only reason life was worth living. Unfortunately, I’ve been disappointed by many people. I feel that I’m more understood now because I’ve been vocal about my needs. I wish that people thought about and asked me questions before I needed to spell it out.
mK: True. So, what motivates you?
BR: I try to find fulfillment and meaning in the things I do. I try to spend my time on worthwhile and important activities since I was sick for most of my life and lost so much time. I’m also motivated by reality. I have a job, but hope to find a fulfilling career. I also spend a good deal of time talking/seeing with my mom. I am so grateful to her for keeping me strong and alive.
mK: When was the first time you felt like yourself after your diagnosis?
BR: The first time that I felt like myself was my sophomore year of high school, three years after treatment. I finally was adjusting to my balance issues, my weak left side, and my deaf left ear. I remember starting to smile again when I was fifteen. However, that lasted only a year because my facial pain started a year later. Only within the last year have I felt like myself again. I’ve only had a decade of normalcy in my thirty five years of living.
mK: You have had a very interesting journey. What makes you laugh, cry, angry?
BR: I get angry when I meet people who can’t appreciate what they have. I know people who have lucrative careers and are healthy but can’t be happy. Some people can’t be satisfied no matter what. I don’t cry or laugh that easily. I can laugh at the dumbest commercial and other time things that aren’t so funny. I cry when I’m somehow reminded of the many emergency room experiences where I verbally abused my mom. I was in such agony and just wanted to not feel those electric shocks. I always screamed that I needed more pain killers. I also cry when I really think about how my career and my lack of memories have been compromised because of my chronic pain. For a long time I behaved like someone ten years younger than whatever my chronological age was.
Having to accept how I treated my mom (especially in the emergency room) has been very difficult for me to deal with. I missed thirteen years of life. I went from being age sixteen to twenty-eight in pain. My mom was in her mid-forties and what seemed like minutes later, she was fifty-eight years old. Having to accept that I might never have a fulfilling and lucrative career also is a difficult issue for me. I am still not certain about what direction to go in. I know that it can be typical for people to not know their direction, too. Time is of the essence for me now since I already lost so many years. I become angry when people have no compassion for whatever troubling situation someone is dealing with. Some people seem to have such an easy life and others have such a difficult time. I also get angry when people are not grateful for what they have and are too greedy. I’m very grateful for always having a nice home, being able to go to any doctor that I need to see, etc. Of course I have my bad days, too. I’m not sure what I laugh at. I know that I’ve laughed at some stupid commercials.
mK: Some commercials out there put us on the floor! What was your toughest challenge during or after treatment? How did you overcome it?
BR: My toughest challenge was surviving with my nerve damage. The facial pain (trigeminal neuralgia) is known as one of the worst pains in the world. I remember the night I was first awoken by the pain. I was in such agony that I punched my cheek hoping that I would scare it away. I didn’t. It took thirteen years to find a doctor who would treat it properly. Having to accept what my life became for those long years makes me very sad. My life revolved around finding a doctor who would take me seriously. No one did. The internet wasn’t around yet, pain wasn’t studied, and treating children wasn’t taken seriously. Instead of doctors trying to treat it properly, I was given any kind of medication that might have worked. I tried seizure, heart, and a zillion other medications that did not work and affected me so much that I could barely walk. I was lucky if I could make it to the toilet in time since I was prescribed with so much medication. It’s a disgrace to the medical system that they let me try every medication except the medications that would stay in my blood stream longer and work. The rest of my life for those years was truly sad. I could hardly focus on school, my social life, vacations with my parents, a career, etc. I couldn’t treat people well because I was so angry with life and I couldn’t emotionally grow as most young adults do. It was impossible to have a good life when you’re in constant pain.
My love for my mom is the only reason that I survived. She would have been devastated if anything happened to me. I must have had some kind of hope because I’m still here and in a much better place.
mK: What is your guilty pleasure?
BR: My guilty pleasure is eating Lindt chocolate truffles and vegging out in front of the television. It’s so nice to be able to relax and to focus on nothing for a while. Unfortunately, I do that too often.
mK: Random question time… If you found a magic lamp and had 3 wishes… what would you wish for?
BR: My three wishes are 1) to pay off my parent’s mortgage’s and to payoff my mortgage, 2) finding a fulfilling and lucrative career helping sick children and other benign brain tumor survivors is another wish. I have an idea, but I don’t want to share it yet. 3) Not having any other serious health problems is my third. I know that they’re slightly unrealistic.
mK: Hey, wishes and dreams are what keep us going… What do you like to do in your spare time?
BR: I love looking at art and going to different museums. I like to travel overseas and also go on weekend getaways. I love big cities, the theatre, getting together with friends and catching up. I like volunteering my time for a good cause. I raise $ for the blind (with The Lions Club) and I am passionate about helping the homeless.
mK: What are you doing now?
BR: I work part-time (30 hours/weekly) for a very large corporation. I work in the finance dept. doing work that’s very similar to an accts. payable representative. I also am starting to write short stories. I just finished my first one a few months ago. I’ve started putting my work on the website that I run. It’s called itsjustbenign.com and it connects benign brain tumor survivors everywhere. I imagined that the members would be mostly from the USA and they’re not. Most are from the United Kingdom and overseas. That was a surprise.
mK: Advice for people that get daunting diagnoses?
BR: Giving advice for newly diagnosed is difficult since I was diagnosed so long ago and as a child. I think that I would try to surround myself with people who love me and be honest about how I’m feeling. I’d call all doctors that are friends and ask for their advice.
mK: Any parting words for all the mAss Kickers?
BR: I think that it’s wonderful that they’re so many different organizations out there that help sick children. However, I feel that hardly anyone thinks about these children after treatment. I realize that times are much better now but, no one applauds the adult who has managed to live with certain traumas. I feel like we’re a forgotten group.
Thank you so much for interviewing me. I’m so happy that some attention will be on “benign” brain tumors, and trigeminal neuralgia.
Thanks Beth for shining the light on “benign” brain tumors. Just because a brain tumor is “benign” and can be treated, doesn’t mean it shouldn’t be taken seriously! The same goes for a cancer diagnosis. Just because a patient is in remission does not mean they are “cured”. We are fighting for a “cure”, but we must be prepared to deal with quality of life issues for “survivors”. Check out It’s Just Benign to support patients and their loved ones affected by “non-malignant” brain tumors.