Samantha from Quebec shares her story on her wild diagnosis.
I have always had problems with my stomach. So it wasn’t a warning sign for me for what was to come. No, that happened shortly after my wedding. I got married and started to notice that my energy levels were dropping.
But I was a newlywed! I chalked it up to that and the fact that work was becoming overwhelming. I wasn’t just working double shifts. We owned our own company and were working some pretty crazy hours in order to make ends meet. Slowly over a couple of months my energy lagged even more and eventually, I would need to take breaks while walking down the block, getting dressed or taking a shower. My sweet husband kept telling me to “go to the doctor! Get yourself checked out!” But this was a prospect that I was not excited about. Mostly, because in the past I was always dismissed, looked at funny or told it was “nothing.” I didn’t want to go through that again, so out of pride or spite, I put off going for a very long time.
When I finally did go, the nice doctor at the clinic sent me to the hospital straight away. I was alarmed–he had said I needed an immediate blood transfusion. My hemoglobin had dropped to critical levels and everyone in the ER was impressed that I was still conscious and mobile. After the blood transfusion (and thousand of questions by everyone, residents, students, interns, nurses, doctors as to where and how I had lost so much blood,) they scheduled me for a gastroscope the next day. It was then that they found the tumour in my duodenum (which was a new word for me!)
While I was still drugged from the sedative they suggested that I check myself into the hospital so that they might do more tests. I did point out that they made me sign a paper promising not to make any major decisions that day and that deciding to hospitalize myself was a major decision. I think they found the humour in what I said, I know my husband did! After many tests, scopes, scans, blood tests and various other things they told me that I had gastrointestinal stromal tumour (gist.) Suddenly a lot of things I had been experiencing started to make sense.
That was 6.5 years ago. I have since found out that I am a wildtype mutation (different mutations can predict how effective the different treatments will be, wildtype happens to be one of the more challenging types to treat.) I have also found out that I have a rare bleeding issue, where my liver metastasis will randomly split open and start bleeding with no warning and no way to prevent it other than to limit large amounts of physical activity. It is one of those things: it could never happen again, or it could happen tomorrow, no one really knows. I have had multiple embolizations and RFA to try to reduce the risk, but it is always there. This is apparently not a usual symptom of gist as both my oncologist and my surgeon who are gist specialists have both told me that “this never happens” and that I am the only one. Luckily, my career 2.0 involves research and writing, (I went back to school and am currently working on my Masters in Art History) nothing with a lot of physical activity. I am also working and volunteering as an advocate for www.gistkids.org a website dedicated to paediatric and wildtype gist patients.