Tell us a little bit about yourself.
This question used to be so easy to answer before I got sick, lol. So I’ll start off with what I would share pre-diagnosis. My names Julie Kramer. I am 28 years old. I’m an Executive Assistant, Nanny, Reiki Practitioner and Yoga Teacher. I grew up in a small little farm town in South Jersey. I grew up playing softball my whole life and raised around Philadelphia sports (and proud of it)! I love being outdoors, but I am terribly afraid of spiders. I love anything that is spontaneous and gives me a rush of adrenaline. I am a mother of a rescued 3-legged pup named Louie! And to begin my health, a fun fact: I had 7 wisdom teeth removed. I used to think it was kind of normal, until people look at me weird after I share that lol. I was diagnosed with Celiac disease in 2010 so I’m all about that gluten free lifestyle and feel better for it! And last but not least, I was diagnosed with Stage 4 Synovial Sarcoma in 2014, 10 days after my 23rd birthday.
What is Sarcoma?
A little bitch. Haha, but medically speaking, Sarcoma is a rare bone or soft tissue cancer. There are numerous subtypes of the cancer, mine being synovial, which most commonly forms around the joints such as behind the knee, shoulder, elbow, etc.
How did you first become aware of your diagnosis?
I was in a bad car accident 5 months prior to my diagnosis. I don’t know how, but I was able to get myself out of my totaled car that was smashed and walk away with only bruises from the seatbelt. I went to the hospital to get x-rays to make sure nothing was broken, and everything looked good! Since the accident though, I had pretty bad back pain that never went away. I always had back pain, so I thought nothing of it. I just assumed it was something I was doing wrong at the gym, and didn’t think too much into it. A few months later, it got pretty annoying, so I decided to see a chiropractor. I was receiving treatments about once a week but noticed no progress. Fast forward to March, I ran the Phillies 5k on a Sunday afternoon. I went to work (nanny) and the girl I nanny for jumped on my back and I almost dropped her. Which is not like me, because I always tried to maintain staying in shape! That night, I was getting ready for bed and I went to lay down and it felt like a 50-pound weight was on my chest. I could not breathe. No exaggeration, I actually couldn’t breathe when I laid on my back. So, I called my mom and she took me to the hospital. We are sitting in the ER and they take an x-ray just to make sure everything looks okay. Well, there it was! A 20 cm wide tumor in my chest. Mind you, I know NOTHING about cancer. No family history of it. No one close to me ever had it. I was so naïve about it that I literally asked the nurse if there was just a pill I can take to make it go away. She was probably thinking, “this poor girl, just wait till she finds out the truth!” Lol so I get admitted into the hospital and I am there for 4 weeks as they try to determine what cancer it is. Of course, the doctor that drops the “C” word to me for the first time has the absolute worst bedside manner. That’s a whole other topic in itself!
Did you experience any symptoms before you were diagnosed with Sarcoma?
Like previously mentioned, I experienced a lot of back and chest pain since the accident that got significantly worse, but I just didn’t think anything of it. When something like that happens, you kind of think to yourself, “Oh, it’s nothing serious. I’m not the type of person that gets cancer.” Like, whatever that even means! ANYONE can get it. Clearly. I remember trying to diagnose myself. At the time, I was in school full time taking 5 classes, all science courses. I asked my microbiology professor about it and she refused to give insight, it was her rule. Which is understandable. I then went to my physiology and anatomy professor and told him I think I have a pulmonary illness, but nothing ever came from it. I just brushed it off, because again, I thought it was nothing.
Where and how did you seek information about Sarcomas?
So when I knew I had cancer, I didn’t know what type. The hospital I was in at the time said it was either Sarcoma, Thymoma, Teratoma, or Lymphoma. I was bed ridden on my laptop every night doing homework, which I no longer had the stable mindset to do, so I researched those cancers instead. My microbiology teacher always told us that “ncbi.gov” was always the best source for accurate information regarding anything medical. So I began to read case studies of Sarcoma patients with primary of lung, along with the other cancers, as well. I mean, when I tell you I clicked and read through at least 30 different websites might even be an understatement. After all of my research, I came to the conclusion that Sarcoma was the one I “wanted” the LEAST. And well, here we are! Lol.
What treatments have you received?
I began with chemotherapy. The AIM regimen: Adriamycin (otherwise known as the red devil), Ifosphamide, and mesna. It was Monday through Thursday, 8 hours a day, then the neulasta shot on Friday, and fluids on Saturday. Each cycle was 3 weeks long and I completed a total of 6 cycles. A month later, I had surgery. It was an 8-hour surgery to remove a cantaloupe sized tumor from my chest. They cracked open my sternum and removed half of my left lung along with ribs one and two. After surgery, I had 36 rounds of proton radiation. I was then NED. However, my first 3-month check-up, I had one new spot on my left lung, so my surgeon removed that with the VATs surgery. I was then NED for 2 years. Then, two new spots, one in each lung appeared. So I had one cyberknifed, which is a form of non-invasive surgery. It’s basically just a very targeted, extremely high dosage radiation. And then I had the other nodule surgically removed.
What’s the best piece of advice you received once you received your diagnosis?
I don’t exactly know if this is advice, but when people and doctors told me NOT TO GOOGLE. And me not listening whatsoever. Once I heard that “C” word, I asked my parents to bring my laptop to the hospital. From dusk to dawn, I researched each cancer I might have, the prognosis, the treatments, the success stories (there weren’t many). Everything you can think of. I couldn’t stop. But it wasn’t making me sad, it was motivating me. I had no history of cancer in my life before this, so I wanted to prepare myself. All the websites concluded my chance of life was below 20%. And, well…here I am. Sharing MY success story. I couldn’t read any online, so I created my own. For myself. For others. Everyone deserves and needs hope. Besides love, hope is the most important thing in life.
What do you do to deal with the stress that comes with a cancer diagnosis? What makes you feel strong?
Right upon diagnosis, I really wasn’t too stressed, but maybe that is because I had no idea what I was about to endure. I cried for maybe 5 minutes and then put my ‘game face’ on. I wouldn’t even refer to fighting cancer as stressful, more depressing and confusing and unknowing. There’s a lot of emotions that you feel going through the battle, but I tried to remain stress-free mostly by laughing every day. I am a goofball, and always tried to make others laugh with my own misfortune, and I continued to do so during cancer. Haha. I mean, having cancer sucks so why make it suckier by sulking all the time? I just tried to remain upbeat and still make daily jokes and laugh at ridiculous things. Doing so also made me feel strong, because I am able to laugh in a very dark and unfortunate situation. Again, cancer is sucky, and we cannot undo the diagnosis, we can only control how we handle it. So, I tried to handle it in a way that made it easy. It really taught me to live in the now, because tomorrow is not promised. And that realization really stands out a lot when you are told you are dying and have to fight for your life.
What’s your biggest fear?
Letting people down. Those who know me well know this is my biggest fear. It’s weird, because I never used to be hard on myself until after beating cancer. I feel like I accomplished something so incredible, that I can do ANYTHING. And if I do something wrong or not the right way, I get really hard on myself. I think, “well, I beat cancer, but I can’t remember to do this or that.” It’s something I battle with every day and lately, I find it getting a little better. I also think it is because there is some guilt left behind from the battle itself. My whole family had to go through what I went through, as well, just from a different perspective. And I feel bad that they had to endure that pain of watching me ‘suffer’. So, when I forget something or don’t do something correctly, I feel like I am causing them pain and suffering again. It’s a little hard to explain. But every day, I try to remind myself that I AM HUMAN, and NO ONE IS PERFECT. Life is all about making mistakes; that’s how we learn!
What’s the most annoying thing people say to you?
The most annoying thing people said to me when I was sick was “you look great”, “you don’t even look sick” or “you should keep your hair short once you’re better.” And it’s funny, because they’re ALL compliments. Crazy how that works, huh? Haha. I don’t hold anything against anyone, they have no idea what bothers me or what doesn’t. They are just trying to keep me positive. It’s more of a personal thing for someone battling. Like, no I don’t look great, I am bald and look like a thumb. And I don’t look sick? Yeah, that’s cancer for ya! Anyone could be sick and not look it. And that right there is SCARY. And for them to suggest I keep my hair short ‘once I am better’ is a terrifying thought. All I associate my short hair with is cancer. So when I finished treatment, I was determined to grow my damn hair down to my butt! Haha. I figured the longer the hair, the less I’ll be reminded of cancer. But being 5 years out of treatment, I think about it every day anyways. In the present time, the most annoying thing is when people say, “at least you’re all better now.” Which again, is people just being positive and helpful and they have no idea what the words mean to me. So I appreciate everyone reaching out and their concerns and continued support. But in reality, mentally, I am worse than when I was sick! When you are fighting cancer, your mind is only occupied with one thing: survival. So that’s all I had to think about when I was sick. Now, I have ALL the time in the world to think about what I went through, how I beat it, what if it comes back, how have things changed, am I where I want to be, etc. Your mind wanders so much, and every decision you make in the present time involves reflecting on the past. It’s something I cannot help, but I am trying my best to work through it. I have gotten this far, right?
What helps keep your spirits up? What gives you hope during this time?
Laughing. Laughing will and always will be my go-to cure for any and all things. Also, spending time with my family. I saved my life solely to enjoy more time with those people. So I try to remind myself of that daily. What gives me hope is making small goals towards my future. I have always kind of been a “live-in-the-moment” type of person, meaning I rarely planned. However, when I became sick, that only increased. Haha, so I rarely am planning my future. More recently, I try to set smaller goals. Yearly goals. That way, I won’t feel overwhelmed at the thought of wanting to be at a certain place years from now. I also always find it helpful to talk with the cancer community. There are so many people, sadly, who can relate to what I am going through and to be able to talk to them is so helpful to me. A lot of times, you feel alone and usually you want to talk to family, but truthfully, they don’t get it. So, I found relief into chatting with fellow battlers and survivors. The cancer community will always have my back and vice versa. I am so fortunate to have met so many incredibly strong individuals.