“ I learned that this new me is definitely different from the old, pre-cancer Mallory…but that I needed to spend some time getting to know her and love her or we would just end up hating each other forever.
Mallory Casperson is another mAss Kicker who rose up and found a new path. Mallory was originally on the path to a PhD in Aerospace Engineering when she started her epic battle with cancer. She got her BS and MS in Aerospace Engineering from the University of Illinois at Urban-Champaign in 2009 and 2012. She is cited in a few engineering journals and was a NASA Graduate Research Fellow in 2012 and 2013. We met her at a conference earlier this year and were impressed by her drive to promote Lacuna Loft. We were fortunate to meet up with her and ask her a few questions about her journey to post treatment “thrivership”.
mK: Thanks for doing this Mallory! What/ when was your diagnosis? How did you find out about your diagnosis?
MC: I was diagnosed with Stage II A Hodgkin’s Lymphoma on Feb 16, 2011. I had a biopsy 2 days earlier and was called by the physician’s office in the morning on Feb. 16th. They asked if I could come in and speak with the doctor…and could I be there in 10 minutes. Ha! Even in the small town I lived in, 10 minutes was going to be a stretch. Still, I arrived soon after receiving the call and was led into an exam room where the doctor told me that the biopsy had revealed Hodgkin’s disease. At that time we didn’t know the staging or anything else. My mother had died of cancer two months before my diagnosis so I just remember thinking, “Of course. Makes sense. Just one more thing to deal with.”
mK: Whoa… What were your symptoms?
MC: I had a set of very swollen lymphnodes in my neck for a number of months. The doctor on campus (I was in graduate school at the time) finally decided that someone more experienced needed to look at them, and she referred me to an Ear Nose & Throat (ENT) doctor in the area. I went to see the ENT who assured me that these lymphnodes were probably nothing. I had been on a series of antibiotics to try and rid me of the sinus infection that my initial doctor believed was causing the swollen nodes. The ENT decided to have me back in 6 weeks to see if anything had changed. I came back a few months later and the ENT scheduled me for surgery the next week to rule out “anything serious.”
mK: Why did you start Lacuna Loft? What is the mission of Lacuna Loft?
MC: I’ve always been an active person and I grew up constantly going from one activity to another. While I was an avid reader, all of my other hobbies involved moving and sweating. During my cancer diagnosis, I had a lot of trouble entertaining myself when I couldn’t go out for a 6 mile run or keep myself busy with school and work. This adjustment was very painful for me. I hadn’t realized before that I had NO calm hobbies! When I was caregiving for my mother and during my own diagnosis, I was in graduate school for Aerospace Engineering. I received my Masters Degree about a year after the end of my treatments and started my PhD program. I had so much trouble concentrating and I was constantly emotionally and physically exhausted though, making the long hours necessary for my studies very difficult. While I still enjoyed the work and the research, I needed a more compassionate working environment than could be afforded to me in my PhD program. It was clear that I needed to make a change. I left graduate school in August 2013. Earlier that summer I was walking through downtown Seattle with my husband (we were working from different states that summer so this was a rare weekend visit) and he was encouraging me to think about what I might want to do if I could do anything that I wanted. I had been enjoying blogging on a daily basis (one of the “calm” hobbies that I so painfully developed) and I was craving something brand new from my engineering work. I was thinking about all of the emotional support that I had been lacking during my caregiving and cancer fighting…from my peers, from my work environment, and from my own lack of calm methods to self care. From this conversation, Lacuna Loft was born. Lacuna Loft is a not for profit, online magazine for young adults dealing with cancer or long term illness as patients, survivors, or caregivers. We focus on everything lifestyle maintenance and psychosocial support from diy activities, to tips for friends and family, to cooking during treatments and into survivorship, to personal stories, to exercise, and much more.
mK: Very cool. What motivates you?
MC: Sharing my story was something that I found very hard at first. My mother’s death being so immediately followed by my own cancer diagnosis was a very low time in my life. Plus I was completely clueless on how to take care of myself when all I needed was a safe space, someone with a shared experience, and some self love. No one should have to go through cancer as a young adult while feeling alone. I felt so utterly isolated and without peer support…my friends are wonderful, caring people but they just didn’t know how to directly relate to the part of me as a caregiver or a survivor that needed support. I want to help and connect with the young adult cancer survivor community. Through our shared stories we can provide so much life and light to one another, even during such difficult life circumstances.
mK: When was the first time you felt like yourself after your diagnosis?
MC: Feeling like myself has come in waves and stages. Even now sometimes I wake up feeling all in a funk and totally different than the person I remember being before my cancer experience. Still, I think the actual first time was my first day back at work. I had taken the summer off of school and research to finish up my treatments. I returned in August and my husband and I biked into my lab together. It was strenuous biking into campus and then biking back home later that day. I hadn’t done much physical activity besides walking for months. I came home sweaty and very tired from my 20 minute bike ride. I let the dogs into our backyard and just sat in a lawn chair with a bottle of water for a long while. I felt very proud of myself. I had been able to take responsibility for my needs that day…even a need as simple as needing to get home. I had done it myself with my own muscles and strength.
mK: What makes you laugh, cry, angry?
MC: I do all of these things daily! I am an emotive person. I often offer those I’m speaking with far more emotions and details than they probably were wanting in a conversation. I think most things make me laugh. I try and find humor and goofiness all around me. I deal with some anxiety though…I worry about lots of things including a recurrence, the health and wellbeing of my husband and my two doggie daughters, whether I’ll be able to have people children, the list goes on and on. This tends to bring tears. (Just a side note…meeting other young adult cancer survivors has lessened the strength of many of these anxieties…learning that others deal with some of these same worries has been a very powerful experience for me). Anger…hmmm. I think the thing that makes me most angry is someone being unnecessarily mean about something. I have this grand notion that adults shouldn’t yell at other adults without first getting more information. Crazy, I know.
mK: What would you say is the most interesting thing you’ve done?
MC: Wow, that is a tough one! I try to keep myself on my toes now that I am healthy enough to do so. I think one of the most interesting things about me is that I’ve gone from being an Aerospace engineer, working with NASA, to being an entrepreneur and starting a nonprofit. Otherwise, I’ve lived in France for 18 months. I met my husband while salsa dancing. I once ate ants in the Tetons. I’ve run the Chicago Marathon 3 times. I have watched all variations of Star Trek and its derivatives, except Battlestar Galactica. Given all of these things though, you can often find me snuggled on a couch with a pup and a movie.
mK: HAHAHA… so you’re a “Trekie”? You will appreciate BSG! What was the toughest challenge you faced as a survivor? How did you overcome it?
MC: Self acceptance…hands down. My prior lack of self love, self care, and self acceptance made all of the other things that cancer brings almost unbearable. I went from being a very busy and active person to needing to take a break from school. I had never needed to comfort myself in a time when I couldn’t rely on physical activity or the shear business of my schedule to come and take my mind away from everything. With cancer though, I was usually frustrated with my lack of energy and with how sad I felt all of the time. I didn’t like that my evening activities were basically cut from my life because I was so fatigued. Instead of being loving towards myself and actively seeking out solutions to my changing needs, I spent all of my energy loathing the fact that anything needed to change at all. It took time, lots of love from those around me, a wonderful therapist, and finally meeting survivors like myself to learn that I could give myself whatever I needed and that I could ask for everything else. I learned that this new me is definitely different from the old, pre-cancer Mallory…but that I needed to spend some time getting to know her and love her or we would just end up hating each other forever. Coming from an engineering background and being the task and goal oriented person that I am, this transformation was difficult to say the least. There isn’t a check list involved when “self acceptance” is the thing one needs to learn.
mK: Good advice. What is your guilty pleasure?
MC: Sweet things!!! I think that ice cream is my favorite food. I actually didn’t eat sweets until after I got cancer though. I figured they were past the line of ‘definitely not good for me’ and avoided them entirely. Since then I have learned that donuts are totally worth it!
mK: Donuts were created to apease the Germanic goddess Perchta… Anyways… another weird question for ya… If you could be invisible for 24 hours, what would you do?
MC: Making the assumption that invisibility means that I can do whatever I want without paying anything, I would definitely travel! I’d get on a plane and go somewhere with lots of culture and history.
mK: What do you like to do in your spare time?
MC: Honestly, a lot of my spare time is spent on Lacuna Loft. Lacuna Loft is my full time gig and it takes up most of my ‘non work hours’ time too. (My husband has a start up though so we just end up working together in the evenings and weekends). Otherwise I love to hike, run, bike, and swim. For the past 2 years I’ve coached swimming a few evenings a week. I like baking and sewing. I love going camping and backpacking. I spend a lot of time with my two pups, snuggling, running, walking, or racing around the house.
mK: What are you up to now?
MC: Lacuna Loft is in the final stages of getting our federal tax exempt status so right now I’m learning the ropes of being a full time nonprofit executive. I’m also packing up my house because my family is moving from Central Illinois to Northern California in a few months!
mK: Any advice for people or loved ones that get daunting diagnoses?
MC: Be a good advocate for yourself and for those around you. Whether this means getting a doctor to run an extra test when they don’t think it is necessary but you really do (because *you* know your body best) or whether its understanding the side effects (think body changes, fertility, hair loss, fatigue, etc.) that your medicines will cause or being communicative at work about what your new needs are. No one knows you better than you, so you are the best one to advocate for your own care. Figure out what you need and ask for it. Know that your emotional well being is just as important as your physical well being.
mK: Any parting words for all the mAss Kickers?
MC: Keep kicking mASS!
Mallory Casperson: Swimming coach, Northern California newbie, nonprofit executive, donut and candy addict, ant eater, NASA intern, Trekie, Hodgkin’s Lymphoma thriver, and inspired young adult cancer advocate. Check out Lacuna Loft when you get the chance. Good luck with all your future endeavors!