Happy New Year! I hope you all had good holiday seasons and that 2019 is off to a good start. We had a wonderful Christmas, with celebrations at both the Schwantes and McCullough homesteads. Sam was in Lego heaven and we were all happy for some relaxed time with family and especially excited for time with sweet baby Lexi (and her parents, of course).
The start of the New Year brought changes for both Tim and me. Tim’s office has gone virtual, so he’s been splitting work time between home and a new co-working space in town. And I’m now officially into my non-working waiting period for short term disability benefits. So on this workday, I’m writing from a warm, sunny corner of Weaver St Market, our local food co-op, where I treated myself to coffee and a chocolate croissant and a binge read of the new Louise Penny mystery this morning. Welcome to the world of not working. It feels good. And still strange. As I’ve been enjoying my treats this morning I’ve also been half listening in to a conversation between two women discussing some kind of maternal child health research study. And as much as I feel like I’ve made the right decision to step away from work for now, there’s a part of me that already misses being in that world and feeling like a professional. But only a part of me – the other part just laughed to myself when they started talking about IRB applications and I thought about how I can just sit and read my novel instead of worrying about something like that.
All this to say that I’m giving this work break, which felt like it really began last Wednesday when Sam went back to school, a “so far, so good.” I’ve been resting well and doing some very gratifying organizing in our house. Most importantly, I’ve had the energy to do the things that make me happy – reading a lot, cooking actual meals, walking Quincey, and enjoying time with my boys. Last weekend we took advantage of an unseasonably warm day and went to the NC Zoo. We walked a ton and when we got home I was able to keep playing with Sam instead of having to spend the rest of the day in bed. It felt amazing.
Many of you will not be surprised that the fact that I’m feeling good and more energetic means that I have been having thoughts like, “well, if I feel this good I should be working.” Thankfully, there are wise people all around me to remind me that the whole point of not working is so that I can have energy to do the more important things in my life – resting, healing, being with my family, and enjoying my life – instead of spending so much energy on working that I don’t have enough left over for the important things.
I know this, but it’s hard to step back from both the societal expectation and my own desire to have a professional identify and to do it all. I’ve been wrestling with what it means to not work. Who am I and how do I answer the inevitable get to know you question of “what do you do?” or the small talk of “how’s work?” I’ve never felt overly attached to my work in terms of it being a huge part of my identity. But stepping away from it makes me think that I have in fact been more attached than I’ve allowed myself to believe. Who am I if I’m not working? What does it mean to have worked so hard for professional degrees (and still be paying for them?) if I’m not using them?
At the root of a lot of this angst, I think, is that I feel like using a disability leave means the answer to the “what do you do?”/ “who am I” questions is “I’m a full time cancer patient.” Again, rationally I know that I’m a lot more than that – I’m a mother, a partner, a friend, a person who is tired and just needs a break. But my feelings, which are often much more powerful than my rational mind, often leave me feeling like more of a cancer patient than I want to feel.
I’m working to re-frame this for myself. It’s true that I am someone living with cancer, and I try to think of myself as someone LIVING with it, rather than as a patient. That means that right now my job is to do everything in my power to continue living well and to support my body in recovering, getting stronger, and protecting the health that continues to outweigh the disease that exists in it.
I feel like I’m on the path to doing all of this. My energy has improved and my appetite is back to normal. My breathing continues to be impacted by the “schmutz” in my right lung (which we now know is both inflammation from the immunotherapy and another metastases that appears to be stable), but I think even that is improving some. I’m getting a little stronger as I get back into light exercise. Having the energy to enjoy time with Tim and Sam has improved my mood and mental outlook tremendously. And my blood counts from a couple of weeks ago showed big improvements for the first time since last February! I was shocked – really considered checking with my nurse navigator to see if they were really my results.
It’s hard to rest in the not knowing of this time – not knowing when or if it will feel right to return to work. But it’s good work for me, and I’m so very grateful to be able to test this out as something that I’m choosing instead of something that’s being forced on me during crisis mode.
Thanks for listening, and for all that so many of you are doing to support us in making this work! Love to all of you.
P.S. Most of you likely saw my Facebook post about our work with Alex, a wonderful UNC senior photojournalism major who we’ve been so lucky to get to know. After losing his father to cancer several years ago he wanted to do his senior project on a family experiencing cancer. He is incredibly talented and we love how his project turned out. If you missed seeing it on facebook, you can find it on his website: https://www.alexkormannphoto.com/annas-story.html
Here are a few of my other favorite photos he took this fall that didn’t make it into the final project.