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Existential Angst and Identity Work

Even though I’m feeling physically better and better now that I’m a month+ out from surgery and my stitches have been removed, and despite the “good” news from various pathology reports and tests, I have to admit I’ve been feeling worse emotionally over this last couple weeks (and no, this doesn’t have anything to do with holiday “bah humbuggery”). Every time I stop moving and ask myself “how am I feeling right now?”, the answer is usually some combo of sad and scared, seasoned with what I’m grandly referring to as “existential angst”.

Why so blue? I think that is in large part due to a situational clarification (and an accompanying identity shift) that has finally started to come into focus for me: I really don’t “just” have breast cancer. What I have is a secondary “solid tumor” cancer which is a result of the radiation treatments from my go-round with Hodgkin’s Disease nearly 24 years ago. The treatment protocols are similar, but the overall long-term prognosis and mortality expectations are not necessarily the same for me as they would be for a person for whom breast cancer is their first cancer. How do I know that? Well, I’ve started doing internet research (yes, that means falling down that potentially terrifying rabbit hole that everyone warns you about, but I’m ready for a little more information now). I’ve Googled things like “Hodgkin’s Lymphoma long-term survival rates” and “breast cancer after Hodgkin’s treatments”. I’ve read through a bunch of articles from the NIH PubMed archives and hopped from one alarming reference to another, while discovering that the medical establishment now knows a fair amount about the long-term effects and risks of extended radiation treatments. I never really did any of this research after my Hodgkin’s treatments were over (admittedly, the internet was not as easy to shake information out of back then in the early 1990s, but I was also pretty committed to denial and ignorance as an emotional survival strategy until recently). So many years went by, and I was so generally healthy, that I lost both the sense that I was living on borrowed time and the urge to be eternally vigilant. My oncologist would occasionally mention certain kinds of ongoing risks during my yearly checkups, but mostly I heard these as justifications for why we needed to start/stop certain kinds of tests and screenings rather than as ominous reminders that I was heading into the most likely time period for a secondary cancer to show up (which, for the record, is 20+ years after the initial treatment—and I just celebrated 23 years of remission this past January). Even last year when I was called back into the Breast Health Center after my yearly (clear) mammogram to talk about how high risk I was, the previous Hodgkin’s treatment wasn’t really emphasized as a red-alert was just one of many factors we talked about in general before they pushed me to get tested for the hereditary BRCA genes. (Also for the record: I’ve now been tested twice for hereditary cancer risks, and both times my tests came back clear. So heredity is not a factor for me.)

All this is a long way of emphasizing that I’m just now finally realizing that there’s a bigger picture developing here, a story arc if you will—one that started but did not end with my first cancer treatments, but rather stretches over several decades and incidences (and certainly has the potential to continue stretching over additional decades and incidences). This bigger-picture/longer story arc realization is triggering a lot of identity work—not just the already familiar shift from “healthy person” to “person with cancer” to (hopefully) “cancer survivor”, but something more complex and ominous in which Our Heroine finally realizes that she is more of a special snowflake than she thought she was, and possibly in greater danger. There really aren’t that many people diagnosed every year with Hodgkin’s Lymphoma (the number for 2015 was something like 9000 new cases), and we haven’t been able to successfully treat it for very long (my Grandma died of it back in the early 1970s, right after I was born). But there is now this generation of young women, of which I am one, who were treated successfully for Hodgkin’s Lymphoma in their teens and 20s, who are now living long enough that we are getting some data about long-term survival rates and additional complications down the road as a result of earlier treatments. Additional complications like secondary cancers. Of which the most common one (in women) is breast cancer. So apparently, breast cancer after Hodgkin’s Lymphoma is totally a thing, and now it’s my thing. Whether I expected it or not, whether I wanted it or not, and no matter how I might wish it otherwise, I’m now in the process of resigning myself to this (and the increased vigilance that comes along with it) being a permanent part of my identity.

Identity work is challenging at best and often scary and filled with grieving as old identities die away and new identities are born. It takes great courage and fortitude to stay optimistic during this process of integrating stigmatized or disagreeable identities—and I’ll be honest, I’m struggling with it. Some days I am more courageous, some days I get lost in the fear and grieving. I already did a big bunch of identity work back when I was first diagnosed with cancer back in my 20s as I grappled with the shift from healthy/safe to ill/at risk and then back again (although as I myself found during the research for my MA thesis, you never really completely lose the cancer identity once you’ve had it—it just hopefully fades farther and farther into the background). But here I am again, 23 years later, realizing that yup, the cancer identity is still here and there’s a pretty high risk that it will be here over and over again as long as I live. I am grappling with the idea that I’ll never be able to put a period on the end of that “I had cancer” sentence. The best I can hope for are ellipses and maybe a question mark: “I had cancer...and then I had it again...and then...?” Put another way, it’s becoming clear that not only am I not out of the woods yet, I’m realizing that the forest is vaster and darker than I ever knew (and very likely has some scary monsters in it that I don’t even know anything about yet.)

So: how to reconcile all that dark and scary existential angst and identity work with the “audacious optimism” state of being I have been such a faithful practitioner of for so long? How do I accept what is without hiding or panicking? How do I sustain a sense of courage all the time, day in, day out, moment to moment, when the forest is so big and dark and I’m so little? How do I find meaning and keep a sense of capability in a situation that has caused/is causing/will cause so much suffering, and which is so uncertain and unpredictable? I really don’t know. Sometimes, I just won’t. I won’t reconcile, I won’t accept, I won’t sustain, I won’t find or keep or have. And sometimes I will. Hopefully I’ll have more “will” than “won’t” times, and that’s all I can hope for right now. Repeated applications of love help, and “keeping it 100” honest communication seems to also. Other than that all I can do is just keep swimming, as Dory from Finding Nemo might say. Keep swimming, keep walking, keep going. Jettison judgement. Feel all the feels. Communicate. Accept. Continue.

Because what else ya gonna do?

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