Time and time again we are reminded that sarcoma, such a rare and “forgotten” disease can strike anyone at anytime. This most recent profile of sarcoma reminds us that sarcoma knows absolutely no boundaries. Today we hear from Melony located in Australia. Thank you for bravely sharing your story with us.
EDDF: Tell us a little bit about yourself.
ME: My name is Melony Emerton, I’m nearly 30 and I work for the Australian Public Service.
I guess for the purpose of this blog you can call me a two-time cancer survivor, but I try not to let that define who I am in my life. I love to exercise and have recently taken up Australian Rules Football, it’s the best fun I’ve had with a ball.
EDDF: What type of sarcoma do you have?
ME: I had clear cell sarcoma in my small intestine.
EDDF: How did you first detect you had sarcoma? How old were you?
ME: It took a little over twelve months for me to be diagnosed but I guess my story actually starts when I was 17 years old.
It was in the summer holidays before I started Year twelve (I think you guys call it the Senior Year in the US) and I was heading to the beach with some friends when I felt a lump in my neck. I had been doing a lot of fitness training around that time, so I dismissed it as a swollen gland or strained muscle, but it kept growing. The lump turned out to be Hodgekins Lymphoma and the cancer had spread from the lymph nodes in my neck, down my chest and into my spleen, so I was in Stage 3. An intense six month course of chemotherapy, and two bone marrow harvests later, I was in remission. It took a couple of years for my body and mind to fully recover from the treatment, but life was good.
In 2009 my fiancée and I moved away from our family in Tasmania, to our nation’s capital, Canberra to pursue careers in the public service. That is when my body started showing signs that all was not well. Over a number of months I experienced such intense stomach pain that I could barely walk and would curl up in a ball for sometimes 6-12 hours at a time. A number of trips to the emergency room and GP showed nothing, but I knew my body and I knew something wasn’t right. It wasn’t until April 2010, when I was 27 years old, that the pain persisted for three straight days and I started vomiting blood that X-Rays showed there was a blockage in my small intestine, starting in the duodenum.
The lymph nodes in my bowel were also enlarged which lead to a 24 hour argument between the surgical department and the oncology department about which ward would look after me. The head of oncology rather rudely stated that there was “no way that after nine years you have cancer again, it’s just a blocked bowel so you are a surgical case.” (I made a point of not letting him in on my case when my real diagnosis came through ).
EDDF: Tell us about your experience with sarcoma and sarcoma treatments
ME: I was taken in for emergency surgery where they found the growth. Initial pathology came back showing that the growth was malignant, but they couldn’t determine if it was melanoma or sarcoma. I was a bit baffled to be honest, so were my doctors! I tried to be stoic. I had beaten cancer before, I could do it again and I knew this wasn’t a death sentence. My Mum had flown to be by my side because fiancée was away with work and the hardest thing was phoning him to tell him I had cancer and that the future we were planning might not be as bright as we thought it was going to be.
When the final diagnosis of clear cell sarcoma was given to me, I was told very matter- of-factly that I probably wouldn’t be alive to see Christmas 2010, or my wedding which we had planned for March 2011. After that everything was a bit of a blur, I remember some little facts like “ this type of Clear Cell Sarcoma is so rare that there are less than 20 reported cases in the world of its kind, and not one of these patients had survived longer than 5 years after diagnosis”, and “it was resistant to chemotherapy and radiotherapy”.
My surgeon was confident that he had got good margins and I trusted him. Fortunately, the surgery was the only actual treatment I needed.
My fiancée and I spent most of 2010 travelling between Canberra, Sydney and Melbourne for scans and seeking more information (read – desperately trying to get any information that might help us). My family and I are now participants in a Sarcoma study being conducted by the Peter McCallum Cancer Clinic in Melbourne. Peter Mac also provided me with a pain management treatment plan because even to this day I still experience some pretty intense abdominal pain.
EDDF: Where do you stand now?
ME: Now I’m pretty good. I made it to my wedding and have now been happily married for 2-and-a- half years. And I wrote a Bucket List, which is keeping me fairly busy and making sure I’m making the most out of my third chance.
I had a bit of a scare earlier this year when the pain I experience intensified and became an everyday event. An MRI showed a partially blocked bowel and some abnormal spots in my liver, but fortunately surgery found that I had intussusception of bowel and not tumour recurrence, so they just cut that out – easy! My oncologist says I’m going great, but still monitors me very closely.
EDDF: How do you recommend others help out their friends or family battling sarcoma?
ME: Practically, it was the little things that helped the most. Some quiet company while I was in hospital even if I was sleeping it was good to know someone was there. Someone to help with my ironing or household chores even if it was only once or twice.
Emotionally- try not to ask too many questions. It’s hard enough trying to get your own head around the situation without extra people asking questions you either hadn’t thought of yet, or don’t have any answers for. We’ll let you know information when we are ready.
I needed my “inner circle” to understand that they would be the ones who I let on the emotional rollercoaster ride with me. If I got angry, upset, frustrated, stubborn etc, they were the people I would take it out on. Yeah, I felt guilty afterwards, but it is because I loved and trusted them that I knew I could rely on them to still be by my side when I had calmed down and refocussed. You can’t be happy all of the time.
It’s hard being the carer, but as long as you listen to what the patient needs you will be fine. Just know the patient loves you even if they want to shower themselves and then get frustrated at you when they can’t bend down to dry their toes.
EDDF: What quote or saying has helped you through this journey?
ME: You never know how strong you are, until being strong is the only option you have.
EDDF: How do you stay positive?
ME: That’s easy, I remember the alternative and it’s not nearly as fun. Life is short, don’t take it so seriously, have fun, live, love, laugh and grow.
EDDF: Anything you would like to add?
ME: Make the most of your time with other’s time on this earth. Since 2010, I have sky-dived, bungee jumped, ran two marathons, learnt to knit, made a snow angel, learnt to ski, rode an elephant, petted tigers and I have so much more I want to do. My bucket list has given me something to aim for, and some pretty incredible experiences so far. Fight for the life you want, make the right choices to get you there and smile while you’re doing it.
Click this link if you would like to share your story of sarcoma. Patients, survivors, family members, caregivers and sharing the story of those we’ve lost are all welcome.