My name is Elana Schwam and I’m 29 years old. I have recently been diagnosed with Stage 3B Malignant Melanoma at the end of June 2016. This blog is about my personal adventures and lessons learned while beating the shit out of Stage 3 Melanoma.
Hallo friends! It’s been so long since I’ve updated this blog that I have practically forgotten how to edit this site – yikes! Things have been good and busy – REAL busy. Honestly 2018 was the busiest year of my life and I don’t think I’ll ever beat it. But before I get to the exciting details of the last 11 months of my life – I’ll get the obvious out of the way…
Since my last post I’ve had 3 sets of scans (4 months apart). On June 18, 2018 I had my 2-year scans which included full body CT scans and a brain MRI. The yearly scans are always emotional and I can’t help but reflect back on D-day (diagnosis day). Luckily I had a lot of other stuff on my mind that week: The day before my 2-year Cancerversary I took my Nurse Practitioner Board exams, and on my Cancerversary I had a video interview with the place I (spoiler alert) now work for. Anyway, my scans were clear, I passed my boards and secured my first NP job. Yay!
My next set of scans were October 30, 2018 – these were just full body CT scans. These scans were also clear. However, the week before my scans I had some new concerning headaches that were different from my usual headaches and lasted for 1 week. It was the week before Nationals and a few weeks into having my own patient panel at work. After telling my oncologist about them he said if they came back we should get an MRI but good news, I haven’t had one like that since then. For now I’m gonna chalk it up to just a weird migraine induced by the stress of my new job and nationals.
About 2 weeks ago I had my most recent set of scans – full body CT scans and brain MRI, and those were clear as well! At this point I am lucky enough to have a life full of wonderful humans (and other people’s dogs) and a job that is rewarding and equally challenging everyday. After 4 years off I have started coaching college ultimate again (shout out to Brown Disco Inferno!) so I almost don’t have enough time to think about cancer, and that’s how I like it. The only time I do, other then when I’m talking about it are when I have any weird symptom. For cancer survivors and patients alike – any symptom out of the ordinary could be a potential sign that cancer is back. Since I have a health science background I am usually able to quell those nerves pretty quickly but it’s a reality that cancer survivors have to deal with on the regular basis. Weird headache? Could be brain metastasis (melanoma loves the brain). Trouble breathing? Could be lung metastasis (melanoma also loves lungs). For a while I was having back pain near the site of my surgery which makes me nervous for cancer recurrence. Lately though, I have been doing great. No weird symptoms and no scanxiety. Like I said, my life is rich and busy and I’m doing my best to just live it. For those survivors that are struggling – I highly recommend keeping your life busy with hobbies, work, whatever you are capable of. For me – the more free time I have – the more time there is for my brain to wander and when it wanders it gets lost in scary, negative, fearful place. That’s not to say I don’t deal with my emotions, because I do – I just know for me it’s better to stay busy and move on with my life.
The only other thing that I deal with during scan time that I was afraid to admit for a long time is that when I get the news that my scans are clear, I do not feel relief. For a while I also felt guilt that I did not get these feelings of relief that everyone (including myself) expected me to have. Through therapy and my own soul searching and reflecting I realize I don’t have feelings of relief from clear scans because I am traumatized from all the times I was told “you do not have cancer” when in fact I did have cancer. If you know my story then you know I was misdiagnosed more than once. So for me it’s not really scanxiety that get’s me it’s the PTSD of having been failed by medical science in the past. When I was diagnosed I was completely blindsided because everyone had been like “yeah it’s totally not cancer – you’re totally fine” and then “whoops.” So in a way I think my brain is always on high alert, always skeptical of these “clean” results so that if cancer does return, I will be mentally prepared to kick the shit out of it and I won’t be blindsided again. I know this is a coping mechanism. I’m also keenly aware that melanoma has a tendency to lie dormant and then recur 10+ years later (yes dad, I know this is rare) but really rare things have happened to me more than once so that’s where I’m at. Anyway, I have found productive ways to deal with these emotions that I will get to later – but if there are any other cancer survivors out there who don’t feel like throwing a fucking party every time you get a clean scan, you’re not alone.
I’m also aware there are people out there who do not even have the luxury of receiving clear scans, that some people are just hoping for “stable” scans and that there are countless people out there that have lost their lives or loved ones to cancer and hearing me say things like this probably makes me sound like an ungrateful asshole. I hope that is not the case. I am very grateful for my health, that I’m able to continue living my life physically unscathed, and that I have had a really remarkable support system to help me get through all of this. When I started writing this blog I promised myself I would be transparent about my feelings to give others a look at what cancer patients and survivors go through. I also think it’s important to continue to acknowledge that most cancer patients and survivors (85% according to this UpToDate article) suffer from PTSD or other nonspecific psychological distress, and this is an area in the field (of cancer care/survivorship) that needs improvement/research. A lot of people think that you have to go to war or have nightmares to have PTSD and that is not the case. In a couple of days I will be speaking with a social worker at a cancer center to help give insight on a young adult survivorship program that she will be leading – and I will be talking a lot about PTSD. Yay for turning my shitty experience into something better for others!
Dealing with my trauma
The other day I was telling my co-worker about my cancer story (she asked) and she asked me a great question: How do you do your job now after the medical system failed you so many times?
The answer is easy – my cancer diagnosis is the single best motivator to be a better health care provider. Being in primary care is great because I can catch things early, I can educate my patients to wear sunscreen and check their moles and have self body awareness, and I will never blow off a young healthy-appearing patient with an abnormal finding just because she appears young and healthy. I can advocate for my patients and I never deliver difficult news without a damn good plan of attack.
A couple of weeks before my last set of scans I received a biopsy result for one of my patients routine screening mammograms. It was positive for DCIS (ductal carcinoma in situ) – which is the earliest form of breast cancer. This patient spoke zero english, she had just moved to the US and lived with her adult daughter and grandchildren. I thought about the awful way the news had been delivered to me when I was diagnosed, so I recalled all the things that had been missed then so I could do it better for my patient. I immediately set up appointments for my patient with oncologists and surgical oncologists at the local breast cancer center. I had her booked to see me with a nurse care manager, a translator, and the patients’ daughter. I spoke slowly, I delivered only facts (no promises), I answered their questions, and I shared my plan of attack. When I followed up with them 2 weeks later, I connected them with behavioral health and the patient and her daughter thanked me for my kindness and help. The daughter said she was so grateful to be here, because if they were in their country, they never would have known and they likely wouldn’t have treatment. Later when people asked me how it was delivering that news – I realized it was much easier than I expected because I was so motivated to help them and make them feel safe. I wasn’t thinking about myself or my cancer and was actually surprised at how well I was able to deliver the news without stirring up my own issues. Of course about a week later when I was driving home from indoor thinking about it all I had my moment to cry it out and process what had happened. Ultimately though I love my job and nothing is more rewarding then helping other people stay healthy and it helps me deal with my own shit as well.
That brings me to the other ways that I cope as a cancer survivor.
Sharing my story as a way to bring awareness about skin cancer and also the difficulties that young adult cancer survivors face. You may remember that I went on a week long young adult cancer survivors surfing retreat (Camp Koru) in November of 2017. It was the single best thing I have done for myself post cancer. Before Camp Koru I felt completely alone as a young adult cancer survivor. There was no one I could talk to or who would understand the anxiety and fear I was feeling (especially after treatment ended). All the local cancer support groups I had researched were full of survivors who were more than 20 years older than me. Then I went to camp and I met 15+ other young adult cancer survivors who had all felt the same fear, anxiety, trauma that I had. we were all instantly bonded by our collective trauma and resilience. Having my Camp Koru community has been huge and I would be way behind on my psychological growth post-cancer without them.