Patient StoryDec | 28 | 2016
The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Elana's Story.
- Elana Schwam was diagnosed with stage IIIB malignant melanoma and is currently testing a new treatment for her disease. Since her diagnosis, she has done her best to continue her normal daily routine while documenting her thoughts and experiences on her blog.
- "Since the beginning I have had this overwhelming feeling that no matter what, I’m not going to lose this battle."
“I started my blog for a few reasons. My diagnosis came as a surprise and my story is kind of crazy, so in order to process everything, I decided I needed to write it all down. I had this small lump and I went to see my primary care physician and she told me it was nothing, but just in case, referred me to a surgeon. The surgeon said it was probably nothing but if I wanted I could get an ultrasound. The radiologist said it wasn’t cancer and I was fine. The lump was under my arm. I was worried at the time that it was breast cancer. They said it was benign and to remove it would only be for cosmetic reasons. I’m in nursing school and I just had this feeling that it wasn’t right. It was firm. It was kind of fixed and it didn’t hurt at all. It didn’t feel like a cyst because cysts are squishier. And it was growing over three months. So I wanted to get it removed because it just didn’t feel right. So, then after I got it removed I thought I was going to a 5 minute follow up and that’s when the surgeon told me that it was cancer and it was at least stage 3 because it was in a lymph node. If I hadn’t advocated for myself I might have still had this thing and it probably would’ve gone to my bloodstream and become stage 4 and I could be dead in 5 years or less. Had I not done the research, I might not have known to advocate for myself. I’m also lucky that my dad’s a doctor and when I told him about it, that I had already decided I was going to have surgery…he didn’t say anything but he told me later that if I had said I wasn’t going to have surgery he would have said I should. He didn’t want to freak me out."
"So a couple of the biggest reasons I'm writing this blog are to create awareness about melanoma and also to encourage people to advocate for themselves and their loved ones as patients and partners. I don’t want this to happen to other people. Also writing the blog has really been a good way for me to cope with my diagnosis. I think writing everything down was therapeutic for me and organizing it in a way so that I could understand what was actually happening. Also, instead of writing emails to everyone with updates, the blog seemed like a better way to organize it. People can follow the blog and they can choose to read it if they want or not instead of just getting these emails in the inbox and feeling like, I don’t know, they have to read it or they’ll feel bad if they don’t. If people want to hear about what I’m going through then they can.”
Since Being Diagnosed
“I’ve learned that I’m incapable of being brief when I’m writing blog posts. I’m like, ‘okay, I’ll just do a quick update and 8 hours later over 2000 words I’m like okay maybe I should cut this down. I've come to terms that it doesn’t have to be for anyone else.’ I was really upset when I found out that I had cancer. I think I was more upset when everyone told me it was nothing and it took me pushing to do something about it. I think that was probably the most upsetting part. I'm lucky in that I have a really great support system: my parents live like 40 minutes away, I live with a really loving and supportive boyfriend, and I play on this ultimate Frisbee team called Boston Brute Squad. I’ve been playing with many of the women for four years or more. It’s like having 27 sisters, essentially. They have been super supportive and have done so many amazing things to make me feel loved and special this season. I’m normally a very optimistic, positive person but I was expecting to breakdown at some point. So I was surprised and a little worried at first about how well I was doing, but eventually it all hits you. For me it was after the Frisbee season ended and I didn't have that to distract me from my reality anymore. But thanks to all the support from friends and family, and writing the blog, I was able to get back to my old self and stay motivated to keep moving forward. In terms of my cancer, the statistics aren’t great but they could also be worse. Since the beginning though, I have had this overwhelming feeling that no matter what, I’m not going to lose this battle.”
Keeping a Normal Routine
“I would probably go crazy if I didn’t. I’m in a graduate program now and there have been times where I’ve thought of taking a semester off. Like, what am I doing to myself? It's an accelerated, intensive program and it's really stressful. Then I would think, ‘What would I do?’ and I would just have more time in my own head and I would probably freak out. For me, playing Frisbee was the best thing. Initially, when you’re first diagnosed, it’s hard to stop thinking about cancer. But playing Frisbee with my team was the only time I would forget about cancer. It was great. I would definitely suggest to keep being with your normal activities and daily routine if that works for you. I think it would be unhealthy for me just to quit everything and give up on my life goals. I mean, I would like to maybe go on some really cool trips. Actually, my boyfriend and I are going to Cuba and remembering to take more time to just enjoy life."
Any Other Advice?
“Well, everyone deals with these things differently, so things that may have worked for me may not work for other people... it just depends. Let yourself be sad when you’re feeling sad. Surround yourself with people and things that make you happy and do the research if you can. Don’t give up hope and just do things that are ‘good’ for you. Don’t worry so much about other people and what they say because there are a lot of opinions out there on the Internet. Mostly I would say that you just have to figure out what works for you. I'd recommend taking it easy on yourself, embracing all the love and support you can tolerate for others, and just try not to sweat the little things. One thing I've also learned is that with cancer, things change on a weekly to sometimes daily basis, especially with newer melanoma treatments. The hardest part for me I think has been how many times my treatment timeline has changed. So I think being aware that it's going to be a roller coaster ride helps with the shock when things can change so suddenly. Don't get too high but don't get too low."
"Finally, I think that it's important if a person feels that something is not right with their own body, to make sure that their doctor, nurse practitioner, or whoever is doing the exam does a focused physical assessment, where they physically examine you. The radiologist didn’t even touch me and that’s not really his job, but I could tell during the ultrasound that the technician was concerned and the radiologist just came in for like 5 seconds, and said it was nothing. If I had listened to him, statistics say there's a good chance I wouldn't be here in 3 years.”
Since the beginning I have had this overwhelming feeling that no matter what, I’m not going to lose this battle.
This interview took place on October 25th, 2016 and has been edited for clarity.
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