Doing Cancer All Wrong

An interview with Gina Frangello

Gina Frangello’s texts are legend. Ask her a question and she may well send you a novella in reply — or that’s what she did when I told her I’d been diagnosed with breast cancer last spring. Smart, exuberant, discursive, compassionate — her gift for correspondence is a manifestation of her searching mind and generosity of spirit, qualities that have remained constant over the at-times tumultuous twenty-plus years we’ve been friends.

The author of four books of fiction and currently a lead editor at Row House Publishing, Gina broke big in 2021 with the publication of her fifth book, the memoir Blow Your House Down: A Story of Family, Feminism, and Treason (Counterpoint). A chronicle of the “crucible year” (and then some) during which she exploded her carefully built life as a wife and mother for the sake of a soul-shaking affair with the man who would become her second husband, it was on seemingly every “Best of” list of the year and was named a New York Times Editor’s Choice, among its many accolades. (It’s a great book. You should read it!)

During this period, she was also diagnosed with breast cancer and underwent a double mastectomy and chemotherapy — all of which happened almost, as she puts it below, “in the background” of the drama of the rest of her life. I wanted to talk to her about this, both the experience and the process of writing through it, and about how the intervening seven years (during which she has remained cancer free) have colored her interpretation of this cataclysmic period of her life. And, lucky me, she agreed — even though she’s in the middle of organizing the first-ever Bombay Beach Literary Festival on top of her usual cornucopia of commitments. I sent her a bunch of questions and have only very lightly edited her characteristically frank, incisive thoughts on breast cancer and sexual agency, unreliable narrators, the complicated baggage of the term “cancer free,” and so much more.

Hi, and thanks again for doing this! With these interviews I'm trying to listen to other people's experience of being diagnosed with and treated for breast cancer and also trying to recognize the totality of the person's personhood, because no one wants cancer to be their full-time job or identity.

But, inevitably, these stories always start with the moment of discovery and diagnosis. So, perhaps we should start there and get it out of the way. I was around for much of this but, for those who weren't, how did you discover you had breast cancer and what was your initial response, both emotionally and externally? Did you tell the world, kick into problem solving/research mode, try to minimize it, freak out and hide under the bed?

I was diagnosed with breast cancer at an incredibly complex time in my life, which I suspect is a familiar experience given that you were just about to get married when you had your diagnosis. In my case, my father who had lived in my home for 16 years had just died, and I was going through a divorce that had started amicably enough but had recently taken a highly contentious turn. I was also only marginally employed, parenting three kids who had just had their parents split up, with both parents in new relationships, and whose grandfather died in our home, plus my relationship (with the man who is now my husband, Rob Roberge) was long distance and he lived 2000 miles away in California. 

Rob actually discovered my lump during one of his visits to Chicago. He, understandably, wanted to believe it was nothing, but--I don't know how to explain this--although I'd had a lump previously that needed to be biopsied but turned out to be nothing, the very second we discovered the lump this time round, I just knew. I had been under enormous stress and had taken to making gallows humor jokes to my best friend that I had a tumor. I was losing a lot of weight and had no appetite and was dizzy a lot, and she kept telling me it was the stress, which was an extremely reasonable explanation given that I was absolutely under a lot of stress. But in that way you just sometimes know your own body, I knew that wasn't it. I felt a way I had never previously felt. I wanted to chalk it up to that I had never had a dead father or gotten divorced or lived part-time away from my children before either, so that could be why things felt so "different," but from the time Rob felt the lump, I had an immediate sense of: Oh, this is what it's been.

I made medical appointments very quickly, and on the Thanksgiving weekend when no one was in the office but a technician, I called to check on the results--on so-called Black Friday--and managed to somehow coerce the technician into looking at my chart and confirming for me that the lump was indeed cancer. At first, I had almost no reaction. I was numb, because he was just confirming something I already knew. If I hadn't known prior to my medical appointments, I'd have known when the doctor and nurse who ultrasounded my breast immediately did a biopsy right there on the spot and seemed to be exchanging looks over my head. But the day I got the news, I had a bunch of people in my house and a turkey in the oven and I just went downstairs and went about the day like nothing had happened. My first reaction was very much that I didn't want to upset my kids or make the day awkward for my guests. I've returned to that reaction many times since then, parsing it out, and what that said about how I'd been living my life up to that point, my socialization, the things I'd internalized. 

The initial total numbness didn't last super long, but there is a sense of being on autopilot as you start being shuttled around through new doctors and tests and surgeons and second opinions. I had my bilateral mastectomy on January 8, 2016, so there was not a lot of time between diagnosis and the surgery looking back. Let me tell you, though, at that time, it felt like I was waiting for a year and a half, and the waiting--for the surgery, for the pathology report--was the hardest time for me. I had three minor children and my elderly and disabled mother lived in my house, and (while absolutely going a bit nuts on the research because I'm hyper-analytical to perhaps a fault by nature) my absolute priority was to just Get It Out. That waiting period is, for someone who is Type A, a unique kind of hell.

What was your experience of cancer treatment and your interactions with the medical establishment? (This can be as specific or general as you want -- I love the gory details.) What, if anything, surprised you the most?

My surgeon, my oncologist, my GP, they're all highly competent and I still see them all regularly. But cancer treatment contains a lot of surprises and strange indignities, no matter what. For starters, during my surgery I had six lymph nodes removed, but nobody focused on that much because it turned out all my nodes were negative for cancer, so the node removal was barely really even discussed. I got a little pamphlet on lymphedema, but no one referred me to get any compression garments fit or sent me for physical therapy or talked about it much, and when I ended up getting lymphedema nine months after my node removal, everyone on my care team seemed...surprised? They all said, Oh you're young and thin, we didn't expect that. But I fly a lot, and wearing a compression garment during air travel is a big deal in lymphedema prevention, so actually it was not remotely surprising.

It took me a long while to find good care for my lymphedema and get it under control so that it's no longer a big factor in my life. The initial referrals I received weren't very helpful, and it honestly felt as though somehow lymphedema was some rare inexplicable disease no one knew anything about, which is absolutely not the case. I guess you could say I just kind of fell into one of those medical-industrial complex black holes for a while, where it feels like you're on a hamster's wheel of endless referrals and dead ends, and things seem much harder than they turn out to be once you finally get the right help. 

The other weird and disturbing thing was that if you don't get your breast reconstruction as part of your cancer treatment, you likely won't be able to get it covered by insurance later and it will be treated like you're just having an elective breast job for, like, fun. That pressure led me onto an immediate path to reconstruction, where they put the metal "expander" into your body during your mastectomy and start injecting it with saline at regular intervals to prep you for your reconstructive surgery – whereas I think if they had just given me six months to breathe, I probably would not have chosen to have breast reconstruction.

My original breasts were quite small, to the point that in all honesty, in clothing I did not look much different without them, but because my cancer was in two places, one close to the nipple of my left breast, I didn't get to keep my nipples, and it took quite a while for me to process, in the fog of a cancer diagnosis and all the other things going on, that it was really my nipples I was grieving far more so than my breasts. But my nipples were going to be gone with or without breast reconstruction, in the sense that they can build you some reconstructed nipples or give you tattooed nipples, but you will have no nerve endings regardless, you won't feel the nipples, and that part of your life is just gone, full stop. So I ended up on this track for reconstruction because I was panicked that I would later regret not doing it but then have to pay for it as an elective cosmetic surgery. And I've spoken to a lot of other women who have had this experience too. If the medical system hasn't changed this by now, they certainly should. People need time to figure out what's right for them.

The third thing worth noting is the way everyone in the medical-industrial complex, even women physicians, kind of assumes that you are going into this long sexual dry spell of trauma and adjustment to your new body and that you won't have a libido, and they work overtime to assure you that your physical insecurities, your presumed horror at being seen undressed, and your lack of sex drive are all totally normal.

I have complicated feelings about that because I think this is an effort to correct the way for many years doctors failed to acknowledge these psychological issues in breast cancer survivors at all and just expected women to carry on like nothing had transpired. But in my case, I was in a still-new relationship, I very much still felt like a sexual being, and every handbook and doctor seemed to be telling me that I was supposed to be having this other experience I wasn't having. Even my own therapist gasped aloud when I told her I was having sex again less than a week after my mastectomy.

I think there is a larger discussion to have here around the fact that not every woman's sexual identity resides in her breasts — in fact not every breast cancer patient is even a cis-woman (although I am), nor do we all experience desire as being inextricably linked with meeting conventional standards of female beauty according to a generic male gaze as opposed to actual rapport and what constitutes desire between us and our particular partners. The conversations around breast cancer and sexuality need to be much more nuanced. Like online dating sites have whole sections about how and when to "tell" a new partner that you've had a mastectomy, but while that is no doubt useful information, I think the more useful information is how to help women retain sexual agency and not feel like their body has become a thing they need to "explain" to people or experience through the lens of other people's reactions.

Over the past nine months I've found myself really devouring other peoples' stories about cancer specifically and illness/bodily injury more broadly.  In your book you reference Sontag as well as Hélène Cixous and other feminist writers engaged with theorizing the female body. Did you seek out any other literary work or illness narratives to inform your "journey" (a term I can't stop putting in quotes)?

People sent me a lot of self-help books about cancer, mortality, mindfulness, dying, disability, nutrition, more nutrition, oh and here's one more about cancer diets and all the things that need to become your full-time job now that you have had cancer, and at that time in my life, when I was rushing from chemo to courthouses and looking for a full-time job and parenting and elder-caring and trying to be an actual person with friendships and an LDR relationship, I read exactly zero percent of them. What I read a lot of were memoirs and novels that I would call deeply embodied, including those by authors with non-normative bodies. 

My friendship with the writer Emily Rapp Black, who has a prosthetic leg and whose son died of a rare disease, was absolutely invaluable to me (Emily is now my business partner at Circe Consulting, where we work with a lot of writers who are writing about the body). I also read a lot of research studies, and I actively engaged – through social media and in real life – with individual women, some of whom I had already known and many who I just met when this was going on, who had been through breast cancer. I have many favorite books about bodies, from Lidia Yuknavitch's The Chronology of Water to Christina Crosby's A Body, Undone, but most are not about breast cancer specifically. One of my PhD subject areas was “The Literature of the Body,” plus I've read an absolute mountain of work about cystic fibrosis because the protagonist of my third book, A Life in Men, has cystic fibrosis...so you could say I'm deeply obsessed with body writing. It does not have to echo exactly my specific body. 

Probably my favorite writing about breast cancer per se is your Substack. Seriously.  [Ed: awwww] I did write a piece for Covey Club that got syndicated on Healthline about breast cancer and sexuality and I got to interview a lot of amazing women and do a lot of research for that. I also was revising my fourth book of fiction during my chemo, and in it one of the main characters has the BRCA gene and her sister dies of ovarian cancer, and that was...well, it was interesting and intense, because I sold the book before I myself had cancer. One of my best friends had the BRCA gene and died in 2011, as you know, and I was pretty haunted by that and a manifestation of it made its way into my novel, but I had no idea that by the time I was revising the novel, I would be the one who was bald and full of chemo toxins and being hospitalized for neutropenia and so forth. My personal experiences made the novel better, and also harder, and also a salvation.

In your book, breast cancer is one piece of a much larger and more complicated story about a transformative phase of your life: it's a memoir, but not IMO a "cancer memoir." Can you talk about how you approached writing about cancer in the context of everything else that was happening?

I didn't want my cancer to be in the book at all because I was afraid it would take up all the air in the room, you know? But so many other things were happening during my cancer that my writing group kept telling me were essential to the story that the memoir ended up extending to 2019, three years after my Cancer Year. Luckily for me (joking/not joking) it turns out that if you have ever had an extramarital affair and include it in your memoir, that takes up a lot of the air in the room, so virtually nobody talked about the cancer parts of my book at first. One of the cooler things about a book no longer being "new" and in the media constantly is that eventually, it begins to be read in myriad ways beyond its release season talking points, and as time has gone on, I've had a lot of great dialogues with other writers or readers about cancer and especially with those who are also struggling with how to incorporate cancer into a story without writing a "book about cancer." 

For me, I have to be blunt that this was not much of a danger. It would not be at all an overstatement to say that in my life, my cancer was practically happening "in the background," so many other things were going haywire and burning down. The chemo made me very sick, so that was the hardest part really – being so incredibly sick while I was also going through an off-the-rails divorce that was by far the most traumatic experience of my life, and while I was trying to find work, to find my own health insurance, to be the parent my kids needed and make my amends with them for having lived a double life during my infidelity years, and then also dealing with chronic pain for two years post-cancer treatments due to the particular way chemo impacted my osteoarthritis (that ultimately led to a hip replacement). 

From where I stand now, my experience with cancer impacted me a lot more than I was able to feel at the time, because I was in triage mode. I did not have a lot of time to...you know, read all those books people were sending me! I did not have a lot of time to think about what having cancer was going to mean over time. I was just like, You aren't allowed to die, you have kids, you have to survive those ten years everyone talks about, period. People would tell me how they hoped I was exercising self-care and resting and taking time to myself and yadda yadda and I would sit there laughing aloud reading these texts and cards from wonderful people who were trying to help, who loved me. But I did cancer all wrong, you know? Which is also a bit nutballs: that there is a Right Way to "do cancer." But to the extent that we as a culture believe there is, that was not remotely what I was doing. I'm actually a lot more into self-care and healing now than I was at that time, because I have more emotional space for it.

I read Anne Boyer's The Undying in the early months of chemo, and I really struggled with it and what I read to be a lack of sympathy (or empathy) for the project of memoir, like she felt it was important to create this chilly, intellectualized distance between her experience of cancer and chemo and the writing of it. So I'm curious to hear your thoughts as a writer and critic on the genre of "cancer memoir" in general -- and this book in particular, if you've read it.

I have not read that book, but I think this illusion of "distance" in writing memoir comes a lot from the old white masters, you know, the John Gardner craft book bullshit about the writer as an impartial arbiter of Truth, a kind of god. The thing is, that's not accurate even in fiction. The author is always an unreliable narrator, even when they aren't the actual "narrator" of the book. The author is always biased, just like their characters are. The story would always be different if you wrote the book two years later, much less twenty years later. Who are we trying to convince that we aren't emotionally invested, that we have the magical ability to see Absolute Truth instead of through our own lens of emotions and analysis? Who are we trying to convince that there is an Absolute Truth at all, or that intellectualization will get us to it?

I mean, my writing tends to be pretty cerebral, to involve outside source work from other writers and thinkers, to play with form...but I can still only ever react to those things from behind my own eyes and in my own skin. I'm not terribly interested in the pretense that this isn't true. I like to get up in the muck with writers. I like prose that is hot rather than cool. Unless you're Joan Didion or Susan Sontag, that is not in my opinion a style that works super well for most people; it just results in seeming either withholding and self-censoring, or trying to come off as a grandiose guru who has all the answers, which is in my own opinion one of the biggest problems with contemporary memoir, that attempt to channel memoir into also serving as self-improvement full of pop psychology platitudes about how to live. 

But I also like books that elicit intense emotional responses in people – I like to write them myself – so I might want to read The Undying now.

What, if anything, has changed about the way you live your life since being diagnosed? What has stayed the same?

So I don't want to put this in a depressing way, especially when being interviewed by someone who has only just finished cancer treatment, but yeah...I mean, cancer changes how a lot of people, myself included, live and think about our futures. If you're awake and paying attention, you can't help but notice very early on that it's like, from a research perspective, almost all bets are off if you live ten years past diagnosis. Like, the medical system is done with you, few researchers are studying you anymore, you're considered a success story, mission accomplished, see ya. But when you're diagnosed at 47 – look, some aspects of my diagnosis seemed kind of terrifying at first and then later, in the pathology report, turned out not to be as bad as suspected, so I am extremely happy to now be seven years out from my Cancer Year, and I have every reason to hope I'll make it to that big ten-year marker. But I will then be 57 years old. 

I do think of my life, beyond that point, as a kind of Great Unknown where if I have a resurgence, I'm still statistically a "success story." I lived out my ten years, like...you know...well done! Nobody is excited about the idea that maybe at 57 or 60, they can die a grueling death from cancer, but from the medical system's point of view, they're part of an "encouraging" set of stats. So I think it would be fair to say that, while maybe this is a naive perspective, prior to my cancer I always assumed I would live into old age. My parents had – both of my grandmothers did. The women in my family have died mainly between the ages of 86 and 93. But I don't look at life through that lens anymore.

I think a great deal about making sure I've set things up so that my kids will be secure if something happens to me. I don't put things off that I feel passionately about. Though I don't think my husband likes to think about this through a lens of my possibly having limited time, it's both of our natures to live intensely, to live kind of hard, to love hard, to make every day as much of an event as possible. I travel a lot, which was always a great passion of mine but which I might have really curtailed when my economic situation changed post-divorce had I not gotten sick. I don't sit around waiting for things to happen; if I want something, I go after it pretty hard.

Some of this was always a bit my nature – I'm not an entirely different person or something. But I think for many years, I balanced a kind of emotional and psychological intensity with the constant need to people-please and be what other people wanted or expected me to be – or at least what I believed they wanted and expected. I played a lot of parts in the attempt to make others happy. When I got divorced, I made a lot of promises to myself to live more authentically, but if I had not gotten cancer, I honestly can't say how that might have gone. Old habits die hard.

But once I had gone through breast cancer, it kind of cemented certain resolutions I'd made. And that's a balance between experiencing as much as I can, following as many passions as I can, and also really tending to and showing love to my kids, my friends, my husband, the people I'm lucky enough to have in my life, and never to think that can come later when I have "more time." I've come to look at the concept of "more time" as a fictional one, because on the most basic level we only ever have today. Even if we do live to be 93, you know? I don't think I was in touch with that before I got sick. I was always looking to what might make me happier in the future. I was planning my next trip while I was on a trip. I often had an eye on the door, waiting for the Next Thing. I was easily bored and often restless. I can't say that it was entirely cancer that changed these things – a lot of life changes for me happened all at once – but I can say that none of those things are true for me anymore. I live far more in the moment. I'm almost never bored. I'm not looking at the door. I'm happy to be exactly where I am.

What would you tell someone who had just been diagnosed? Again, feel free to be as specific or generic as you like.

I would say that when you first get diagnosed, the world seems entirely composed into a Before and After. For a long time – depending on the person – it really seems as though you will never live another minute, much less another day or week or month or year, without thinking constantly about the fact that you have cancer, and that even if you beat it back, it could return. But that somehow – miraculously – that isn't actually true. You get to a point, wherever that is for you individually, where you actually don't think about it all that much unless...you know, you're doing an interview about your cancer. That you think you'll be afraid all the time for the rest of your life, but at least in my experience, that's just a phase you need to pass through and it isn't permanent. You don't forget but you go on. It isn't the centerpiece of the whole rest of your life. It feels that way for a while, but (and I'm talking of course about people with a reasonably good prognosis here, because I can't speak to what it's like to find out that you are very late stage, as my friend with the BRCA gene discovered) the brain is resilient and multi-faceted, and other things take your attention, and life is a vibrant and enormous thing, and usually you're not thinking about cancer at all.

One more thing: when I was first diagnosed, a friend told me, basically, “You would never wish for this, but you are going to meet people and learn things from it that will turn out to change your life and that will hold a kind of beauty.” And I 100 percent thought she was spouting utter bullshit, but it turns out she was right. No: you would never wish for this. But there will also come a time when it will be hard to imagine who you'd be if it hadn't happened. And although you may still wish cancer didn't know your name and address, you also won't entirely just want to just go back to that person you were Before. It's a kind of both/and, this complicated paradox. Or at least that was true for me.