Thursday, June 16, 2016

Leave your mark (part 1)

Before I found out I had a giant pancreatic tumor, I didn't give too much thought about the impact I was having on the world beyond the stereotypical. I teach, and in my experience us educators really do want to leave our mark on our students. After ten years in the profession, I have had some evidence that I am at least memorable to some students. I live near where I teach, so I have had former students (now adults!) approach me and say, "you taught at Jefferson, right? Mrs. Sparks?" A former student of mine is in school to be a paramedic. I taught him sixth-grade science. That has to count for some amount of impact, right? To be totally honest, I am just so excited to see my old students finding their way in life and finding success. And it's more than a little heartwarming to find out they remember me. I'm self-confident enough to believe they remember me for positive reasons (or I'm just delusional).

I don't believe there's some sort of cosmic reason behind me getting a pancreatic tumor. I just got unlucky. Some people may find comfort in believing bad things happen for a reason, and that's fine by me, but that is not what I believe. No one deserves hardship. The unlucky bit is easier for me to swallow than the possibility I was "gifted" this tumor for a greater purpose. However, in the past year and a half since diagnosis, I have been trying to create my own purpose. I have been trying to leave my mark, because I am acutely aware that making the most of the "now" is so important, as you never know what tomorrow will bring. 

The tumor I had is called the Solid Pseudopapillary Neoplasm (SPN). It's crazy rare. We have a Facebook group, and there are tens of us. Let that sink in... TENS. Less than 100 members, some members are family members of the SPN patients, and this group is INTERNATIONAL. Now I know there are more than 100 people who have had this tumor, but even the largest studies have fewer than 1000 subjects SINCE 1959. To put this in perspective, about 50,000 people are diagnosed with Pancreatic Adenocarcinoma (what people usually mean when they refer to pancreatic cancer) in the United States EACH YEAR. In sum, I'm pretty darn unlucky to get this tumor, but of the pancreatic tumors to get, I'm quite lucky as it's nearly always cured by surgery (which I underwent in January 2015). Every now and then another member gets added to our little group, and us more seasoned members are there to provide support and answer questions. After all, this tumor is SO RARE, the Internet is really the only place to turn facing this diagnosis. A few weeks back I Skyped with a woman from New Zealand who was recently diagnosed. We talked for under an hour, but it was such a powerful experience. I had never actually spoken face-to-face with someone with the same diagnosis. We compared symptoms. She asked questions about surgery and recovery. I think I provided some reassurance. I feel great, and I made sure she knew that. It took about a year for me to be able to say "I feel great," but I really do. 

So my community of SPN sufferers is a mere "tens" of people internationally, but I have been able to reach out to a few of these women (about 90% of people who are diagnosed with SPN are women). This is one way I'm leaving my mark, making lemonade from those life-handed lemons, if you will. It's one way I cope, it's one way I give back, it's one way I try to make sense of this crazy-rare-tumor nonsense. Participating in this extremely small community is just one way I'm attempting to make my mark. In the past year, I've come to a more concrete realization of what really matters to me and the potential impact of my actions. I will title an upcoming piece "part 2," as I have more to say. Thank you for reading.

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