What happens when someone has something rare, something that most people, including doctors and other medical professionals, have never heard of? That is the land where I live, the land of the unicorn, the land of the rarest of the rare. While that makes me the “cool kid” at oncology appointments it makes it difficult to relate to other people, even people who have the same disease as me. Within my disease there are different mutations and each mutation reacts differently to treatment. Of course being the wonderful unicorn that I am, I happen to have the mutation that is the most challenging to treat.
Not being able to relate to people about things I am experiencing leaves a feeling of disconnect, almost as if I am in some alternate reality, where on the inside chaos is happening yet everything seems calm and serene on the outside. I mean, I look fine, so everything must be fine right?! Honestly though, I would much rather be talking about my thesis that I am working on for my MFA (I have a really interesting topic) or swapping recipes. However, over the last while, my body has been rebelling against me and creating situations where I need to talk about what is happening, whether there is anyone who can relate to it or not. I have this issue where every once in a while I randomly start bleeding internally either from the liver, where I have multiple metastasis, or from the duodenum where my disease originated. This is not a regular thing that happens with my disease, of all the people who are in my online group that is disease specific and all of the patients that both my oncologist and my surgeon have, no one has seen this happen before, let alone multiple times in a year.
So who do I look to for comfort and belonging when it seems like there is no one else out there on the planet to whom this happens? I am always the popular girl when new residents meet me because almost all of them have heard of my case which has been to the tumour board more times than I can remember. My team is wonderful, they support me, they listen to me, they accommodate the crazy things I want to do despite being limited in what I am allowed to safely do physically. I know that when they see me they are studying my face, my colour, my eyes, my demeanour, my posture to see if there are any clues that will silently tell them how things are going if I am unable to convey something that I am feeling or experiencing. I am very fortunate to have this team who are there to help me, and who make sure that everything goes according to plan in terms of prescription renewals, scan dates and who are also there when bigger issues arise.
I can’t ask anyone “is this normal?”, “how long does this take (on average) to heal?” or “when will this happen again?” No one really knows the answer to those specific questions. Sometimes I feel like I am silently screaming, all alone, for someone to hear me, to tell me that it is going to be ok, but all I hear back is the echo of my own fears and insecurities. How can anyone reassure me that it is going to be okay when no one really knows? That’s not to say that I haven’t made some great friends online through this journey; friends that check in on each other on a regular basis and whom I care about very much. At the same time, I sort of wish there were people locally that I could get together with and chat over a nice warm cup of tea who understood what it is like to feel so unique.
Luckily my husband who is also my very best friend is there for me and listens whenever I feel anxious or just have something on my mind, even if it keeps us up all night and he has to get up for work in the morning (luckily that doesn’t happen too often.) He also makes sure to come with me to every appointment and every scan (as much as possible.) He is my rock, and the peanut butter to my Nutella. He insists that I play, especially on days when I feel the most serious.
Samantha has always been surrounded by and deeply interested in art and history in all forms. This interest also extends to ancient cultures, mythology and symbology. Sam originally trained and worked as a professional photographer, retoucher, graphic designer as well as studied the history of animation. Now, in her first year of the Masters program Sam is fulfilling a decade long dream of becoming an art historian. Sam is primarily interested in symbology, mythology, Renaissance art, Medieval, and religious iconography. Sam was diagnosed with gist (gastrointestinal stromal tumour) in January 2009.