The Cancer Twins

Part one: Anna

Like many couple stories, the story of the Cancer Twins begins with a period of denial. And, although it’s only now that I can see this clearly, the tale conforms to a pattern familiar from quite a few couple formations in my own past, specifically my late teens and twenties, when I would form a bond with someone based on the unarticulated idea that somehow this relationship was going to save my life. When breast cancer formed a new bond between me and Lisa Duggan, this submerged attachment dynamic would emerge to become a literal truth.

How is this so? To answer I will have to tell the story of how we got together. Now, the story of a couple’s beginning is, in my opinion, a story people mostly only pretend they want to hear. In truth, there can be few things more boring than listening to other people describe their other-directed libido. As a couple origin story, however, the story of the cancer twins has an added dimension of interest. It promises to answer the unseemly questions that often jump to mind when we learn of another’s diagnosis: what were the symptoms? How did you find out?

These questions are driven not by libido but rather by thanatos, the death drive, Freud’s “drive without a name.” Once awakened, this drive establishes itself with tenacity, not only within individuals but also within pair-bonds of all sorts.It is present in the scene of my very first encounter with the idea of a cancer couple: an episode of the eighties TV drama thirtysomething. In this episode Beatrice, a cancer support group habitueé, isolates newly diagnosed Nancy from her family and makes her do exhilarating, dangerous things. I particularly remember a bit in which they park Nancy’s car by the airport and lie on the roof, waiting for landing jets to fly over them.

I was disappointed when, a few scenes later, Nancy ends the friendship and returns to her life-affirming existence as a wife and mother. I kind of liked her better when she was hanging out with angry Beatrice, who at least made her laugh. Freud discusses the laughter of the condemned in great detail in the final section of his work on jokes, but Elizabeth Young-Bruehl’s perspicacious observations on thanatos speak more truly to the comic efforts of the survivor. The death drive, she notes, is our effort to wrest control over our own death, and we protect it as much as we protect our libidinal urge to survive.

I first felt a lump in my breast some time in the fall of 2010. Let’s say November, although truthfully, it’s very hard to recall the exact moment. I know I was very busy. I was on parental leave, and my daughter was just learning to walk. I was writing a paper for the American Studies Association conference in San Antonio and planning a vacation in the Texas Hill Country. As a new mother I was overwhelmed and exhausted, drinking at least half a bottle of wine a night, and on top of that my book The Citizen Machine had just come out so I was busy googling myself constantly.

There was really no time to be worried about this small but disconcerting thing in the upper left quadrant of my left breast. It was my secret, a secret about the size of a hazelnut that, when I was all alone, I would probe with palpating fingers and dissociated thoughts.

Christmas came and went, and with it, the excitement of baby’s first visit from Santa. Then came baby’s late January birthday, and a large party. I took a Klonopin beforehand and drank more than I should have, although I did manage to dance with my now semi-ambulatory child. Eventually, in February, I saw my doctor about an upper respiratory infection and offhandedly mentioned the lump. He looked concerned and did an examination, after which he seemed less concerned–or so I must have wanted to think.

It feels like a cyst to me, he said. But get a mammogram. You don’t want to take chances.

I left his office feeling annoyed at having to go through the rigmarole of finding a radiologist. My most recent mammogram had been performed at the expensive fertility clinic where I’d once been a client, so I took out my phone and called to see if there was a chance they could do one now. They said they could not. I remember being thankful to hear this, as I hated going there, and still shudder at the memory of the gigantic, well-appointed waiting room, decorated like a Marriott Spa and filled with solemn couples whispering to each other.

Somehow, on the long walk home, my mind fed off the sense of reprieve that set in after I made the call. I allowed myself to feel relief. It was as if I’d already had the mammogram. By the time I got around to telling my husband that I’d mentioned the lump to the doctor, as he’d asked me to, my recollection was sufficiently skewed that I was able to say with certainty that it was just a cyst. Still, I said, the doctor had recommended that I get a mammogram just in case.

I’m pretty sure Bill reminded me about the mammogram a few times. I’m pretty sure I gave him evasive replies, saying I was on it. Could he have nagged me more? Probably, but we were already nagging each other a great deal. Now that I was back teaching full time we were busy negotiating the reality of working parent life. Treating the breast lump seemed lower priority than nurturing our child.

February passed, and more birthdays, and before I knew it the middle of March had arrived and we were composing a letter to our child’s birth mother to mark the one-year anniversary of our adoption placement day.

The denial peaked shortly afterwards, at the same moment it finally ended. It was spring break and I was lying on the bed, on the phone to Lisa. It was evening and we were just chatting, there was no big import to the call itself. At some point, Lisa told me she had a lump in her breast.

Oh, don’t worry, I said. I’m sure it’s just a cyst. I’ve had one in my breast for months!

To my astonishment, Lisa was not convinced. She does not take denial for an answer.

#

Thanks to Lisa’s tenacity, I booked a mammogram, although the Gramercy Park radiologist I picked at random turned out to specialize in feet. I never actually met him; as I would later learn by Googling, he was an orthopedic consultant for the New York Rangers, and I had made my appointment for the very day the team entered the playoffs against the Washington Capitals. So I had my mammogram and then, as expected, a nurse called me in for an ultrasound. The technician maintained a poker face throughout the exam, but she did so almost ostentatiously, as if trying to let me know she was practicing non-reactivity. Or maybe she had a tell and I was picking up on it.

I got dressed and waited, forlorn, in a hallway. I supposed that I was waiting for the doctor. At some point a man wearing a suit hurried past me, a white guy in his thirties talking into his cell phone. After an hour, someone noticed me, but not before I overheard one staff member tell another that the doctor had left and was on his way to Washington.

Lisa, meanwhile, was seeing someone else. A radiologist on the upper east side, or so I seem to recall. I remember going to meet her there after her mammogram, and I remember how we huddled with the doctor, receiving the news in a corner walled with densely packed patient files.

I’ve looked at the films, the doctor said. There’s a mass there. It doesn’t look good. You need a biopsy.

I remember being impressed at how fully present the doctor seemed as she delivered the news. No avoidance, no cushioning, no walking out the door pretending to talk on a cell phone. And also, I remember Lisa’s composure, taking the news in without any tears or fuss.

I had ended up getting the bad news from my regular doctor. The radiologist had called him with the results, and, according to my doctor, had been profusely apologetic about not being able to speak to me in person. My lump, said Doctor Low, showed some suspicious markers. It was rounded (like a cyst, I thought to myself) but it was spiculated, meaning it had little spikes coming off it in the image. I never got to see the film itself, but in my mind I picture something like a world war two sea mine, or a weaponized turtle shell from the game Super Mario Bros.

This was the beginning of April, and after leaving the office I tried to get an appointment for a biopsy. This proved difficult, because of the upcoming religious holidays. In the intervening time, on my birthday as it happened, Lisa got her diagnosis. I remember sitting at my computer when her text came through in the early afternoon.

I have cancer, it said.

A little over a week later, on the Sunday before the beginning of Passover, I got biopsied in an empty Beth Israel office by a pathologist who answered his own phone and came in to do the procedure on the weekend. He, like Lisa’s radiologist, was kind and direct. I teared up a bit when he told me that it was cancer, but I had the presence of mind to listen carefully when he said that it looked like a ductal carcinoma, and that the treatment for this type of tumour, a combination of surgery, radiation, and possibly chemotherapy, is generally successful.

I don’t remember where I was when I told the news to Lisa. I don’t even remember whether I called or sent a text. Nor did I realize, because it took five years to sink in, that Lisa and I became cancer twins at a moment when the timeline of my existence had become forked. If it were not for our simultaneous diagnosis, there is no guarantee that I would have chosen the correct path. I say this because, even after discovering that I had a two centimeter tumour, it still took two oncologists to convince me that I needed chemotherapy.

So that is how Lisa, or rather Lisa and her tumour, which she called the rubber lizard, saved my life.

Sometimes, when thanatos propels me, I allow myself to journey along the other fork in the path. I spin out a tale of denial and lymphatic fatigue, of disavowal fed by the meaningless distractions of the present. And, eventually, the tale becomes a retold tale of helplessness: of poor little me, silly old me, waiting until there is nothing anyone can do for me, allowing a child to become motherless once again.

Part 2: Lisa

I’ve never done well with the romantic couple form, and I’m wary about befriending romantic couples; the triangulation makes me nuts. I do better in the best friends form, with circles of multiple best friends at varying distances, moving in and out. I bonded with Anna when I first met her through José Muñoz.

But the bond intensified into the Cancer Twins form in April of 2011 (7 years ago). It started when I was on the phone. I was doing a casual `breast check’ while chatting and found a weird texture. It wasn’t a lump, it wasn’t round. It was flat, rough and squishy like a rubber lizard, and a couple of inches long. I jumped up, hung up, and called the gynecologist. I was in his office within the hour. He told me I should get an immediate mammogram, but my usual lab was booked. I found another one that could see me that day. On the way I called Anna to meet me, and we polarized nearly all our responses from then forward. I hammered her to go get her own mammo; she noticed what was going on around us, and had some of my feelings for me.

As soon as I got the diagnosis of breast cancer stage 3C triple negative, I began calling everyone I knew to tell them. I drew in all my circles of friends and I broadcast to all of them every single thing that happened. My friend Richard Kim created a “Team Lisa” google group with 75 members. The local friends accompanied me nearly every day all summer–to the doctors’ offices and hospital for radiation, chemo, and surgery. Anna, on the other hand, had something called a “sense of privacy.” She shared her cancer experience with only a very small inner circle. And the contrasts continued: I wore wigs, she went for Hermes scarves.   I became wildly extroverted, while she withdrew. I turned my cancer experience into a social club; Anna hugged her child close.

Nonetheless we shared so much. We went mumu shopping, bought stencils to draw our eyebrows back on when they fell out, endlessly discussed the vicissitudes of bone pain.

I talked her into leaving Sloan Kettering, where commonplace, boring breast cancer didn’t get much quality attention, and convinced her to join me at NYU Cancer Center where we enjoyed the attentions of the super-oncologist we all called Spock, and his valiant nurse Debbie. When I first went to meet with Spock and Debbie, I told them Richard was coming in to join us, but he was late. They probably were expecting a boyfriend my age, because they blinked and sat up when a Korean American half my age walked in wearing a hot pink sweater, and then completely took over the meeting—because I really could not register or remember anything any of the doctors said, ever. From then on, a series of friends and ex-lovers of various gender expressions showed up with me, with instructions to describe their work interests to Spock. Carolyn Dinshaw had a particularly trying time, I think, explaining her medievalist bent. But the most fun I had as an observer was watching Jack Halberstam try to enlist Spock to ban my drinking of Diet Coke. Spock chewed him out for getting between me and my magic elixir.

Stories about Spock and Debbie, the Batman and Robin of cancer treatment, circulated on my google groups listserv. There were also lots of stories about the radiation oncologist that Anna and I also shared–Fashionista. Everyone tried to name the designers she wore at each of my visits—Prada, Ferragamo, Chanel, Gucci. José and I explained that we did not follow the usual gender protocols—involving who could see what part of the exam, etc.—because, we said “we’re both gay.” She happily considered our suggestions for redesigning the scratchy, ugly examination gowns, but still wouldn’t let him sit in the women’s waiting room with me.

Anna and I did not share surgeons—she stuck with her original choice at Sloan Kettering. I was accompanied by Kathryn Stockton when I first met mine, and he impressed us despite the baseball memorabilia all over his office. It was my ex Nan Hunter who named him Rick the Knife, then later just called him God.

It was with Nan that I compromised with the dominance of the romantic couple form. In contrast with Anna’s experience again—I found myself somewhat at sea with regard to the “next of kin” designation. I quickly realized that the administrators of the cancer center had long accepted same sex relationships as equivalent to heterosexual ones, but they could not deal with someone like me—no designated partner, no children, no bio-kin I was willing to involve in my treatment. They needed a singular “next of kin” to communicate with about medical decisions. So we lied. We told the doctors and hospitals and all the endless medical forms that Nan was my partner, effectively Mr. Duggan for the duration of the treatment. She lived in Washington D.C.–that explained why others accompanied me most of the time.

I pause here for a moment to praise the exes, the form of relation often assumed by the queer ex. My exes showed up, even the ones I wasn’t speaking to. And though those who were assholes were in the end still assholes, the exes were particularly comfortable with the physical aspect of caretaking. When I needed uncomfortably intimate post-biopsy or post-surgery care, I was most at ease with the exes, including the ones I didn’t really want to talk to. I also pause here to praise the gifts—all the wild and crazy things that kept arriving at my door. Paul Amar sent me Revolution in a Box, with videos book and language tapes from Egypt (it was the 2011 Tahrir Square moment) to remind me that the world awaited me. Marget Long produced the stunning lizard under siege graphic with the slogan summarizing cancer treatment: Burn Cut Poison!… we put it on Tshirts and mugs.

Anna and I shared the everyday details of chemo, neulasta infection prevention shots, radiation burn, hair loss, chemo-brain, endless fatigue, and irritation at people who either patronized or avoided us. And in the end we shared our recovery, both of us cancer free.

I don’t know how I would have gotten through to the end without her as a foil and companion. On my last day of the second round of intense chemo, Anna and I had our photos taken with Spock and Debbie.

I wore one of my five wigs—each with its own name—this one was called Renee. As I walked down the hall on my way out, I could hear music coming from Spock’s office. It was Left Banke’s “Don’t Walk Away Renee” …

Part 3: Reports from Team Lisa

  1. Lisa Duggan

Matters of importance: Salvatore Ferragamo and Marc Jacobs are indeed donors to NYU Clinical Cancer Center. If any of you among my NYC fashionista friends knows anyone in
these designers organizations, please get word to them that there is a dire need for new radiation gowns at the Cancer Center. Scratchy polyester (I checked the labels) fake seersucker blue pinstripe gowns  are an abomination for those (a) with inflamed irradiated skin, and  (b) any pride of appearance whatsoever.

  1. Jose Munoz

I took Lisa to the Cancer Hospital on Tuesday. We took a cab. Some confusion met us as soon as we arrived because we honestly could not figure where I should wait while Lisa was putting on the hated faux seersucker gown. There were two waiting rooms deceptively named Women’s and Men’s. We obviously went to the Women’s because Lisa is a woman. But then a stray though hit me- “I’m biologically male and that may be what they are referring to.” So we clarified this situation with a nurse and I was indeed asked to sit in the Men’s section. I read a book.

Lisa had her treatment and we went in to Fashionista’s office. The head cancer nurse was super impressed with the lizard shrinkage. It is all but undetectable. She said this is a good potential indicator. She asked if I should stay in the room during the examination and Lisa said she wanted me to stay, that it didn’t matter. We were once again a bit confused by the whole gender thing.  Then we waited a while longer and she made her entrance. Fashionista looked like a rare bird going out for a night on the town. She had an exquisite black knitted jacked with silver accents. The dress was some kind of bold retro 70’s print.  She had dark stockings and beautiful shoes. Lisa introduced me. Then the Doctor made a motion to close the examining curtain and Lisa said “No. He is GAY. We are GAY.  We are the same! It doesn’t matter.” Then Fashionista Doctor cracked up. She said that sometimes people bring their brother who actually see a tit and freak out. We all laughed about gender.

A good piece of news to report is that I am not taking any legal action against Lisa for outing me.  I think we can all be happy about that.

  1. Kathryn Schwarz

Divine nurses:  Maria belongs in the pantheon, as does Tiffany, although on a slightly lower tier.  If the pantheon were a football stadium, Tiffany would have season tickets on the 50-yard line, and Maria would have a luxury box.  If the pantheon were a princess castle, Maria would have a pink throne, and Tiffany would have an ornate gilt chair.  If the pantheon were West Side Story, Tiffany would be Anita and Maria would be. . . well, Maria.

  1. Kate Conroy

Upon Renee/Lisa’s request, Nurse Pat administered the first dose of Neulasta, which is given to help replenish white blood cells after the A/C infusion. Pat, who is not only adept at painless MediPort administered treatment and therefore the requested nurse for this new shot, was thorough and patient. On Lisa’s scale of dyke likelihood, Pat rates 80%.  She’s about 60 years old, and presents 50/50 professional sports coach/lefty nun.  Her accent, light eye make-up, and wide gold wedding band skew her a little more toward a traditional (i.e., mis-guided) tractor mower mom of hefty football players.  Further research is needed.

  1. Richard Kim:

Here’s the bit of sour news. Our attempts to queer the NYU Cancer Center have reached something of an impasse. Lisa presented Spock and Nurse Debbie with Death to the Lizard mugs (which come emblazoned with the Death to the Lizard logo from Marget and the slogan “Burn, Poison, Cut” in a hot pink death metal font). Seriously, does anything more fierce exist!? Alas, they were polite, but they just didn’t get it. “This is certainly….um…unique,” said Debbie politely. “I think I should keep this at home,” said Spock.

This left us somewhat dejected. Even though Spock tried to recover with giddy (for Spock) appreciations of Lisa’s newfound expertise in oncology, we couldn’t help but conclude he was irrevocably straight and that queer humor was lost on him. Of course, this evoked in both of us a twisted response–and we now have full blown daddy crushes on Spock. We seek his approval. We even concluded that Spock is not all that Spock-like and actually quite handsome.

  1. Janet Jakobsen

Lisa and I went to see her plastic surgeon, Dr. Mihye Choi, yesterday afternoon, at Dr. Choi’s ultramodernist, extremely sleek offices — so sleek that there was not even a hook for Lisa’s clothes in the consultation room.  Before we were called into the consulting room, we did have some time to pursue the pamphlets and choose the surgeries we would prefer.  Lisa is looking to have her chin done, while I was thinking that I would simply go for the overall “body sculpting,” the design of the offices suggesting that this would be very effective.  I had begun to hope that we could simply refer to Dr. Choi as Dr. Sleek, but when she entered the room that was clearly inaccurate.  As one might expect, she had an excellent pedicure and great platform sandals, but her dress was what I thought of as “flowing” and Lisa described as “fluffy.”  She looked kind and caring and I began to worry that she would be too nice, but that fear provided as unfounded as my earlier hope.  She did express kindness and caring, but most of all she exuded that even more important attribute, competence.  She was able to convey information clearly and without confusion, she spoke to Lisa as a peer (apprehending immediately that Lisa had done lots of research and knew what she was talking about), and she made clear that she was deeply invested in and enjoyed surgery, such that one can only conclude that she’s also good at it.  The highlight of the consultation came as Dr. Choi described the intricacies of one of the potential surgeries (so intricate as to require a microscope), saying, “it’s a fun surgery for me.” It seems unlikely that she would find it so fun, if she weren’t also quite good at it.  And so, she became Dr. Fun Caring and Competent.

  1. Richard Kim

Today Lisa and I went to a miraculous, fabulous, pink, fairy-dust sprinkled, chic place called Bitz and Pieces. We went there to pick out her “cranial prosthesis,” which is insurance speak for wig.

Bitz and Pieces is owned by a KWEENY, rotund guy named Barry Hendrickson, who has provided wigs to just about every famous woman in the world (as his wall of headshots can attest) and who also, tragically, has THE WORST hairpiece in the world. That introduced a note of trepidation. But in the way that people with special talents are sometimes completely unable to apply their skill to themselves–Barry is truly an artist with woman’s hair. Our fears were soon totally erased.

In her private consult room, we were put in the hands of Eric, her cranial prosthesis consultant, who has that magic gay gift of instantly sizing a woman up, understanding what flatters her, what her spoken and unspoken needs are and responding in kind. Lisa tried on just a few wigs–she wanted something that was high-end, human hair and natural looking, but also another that was fun, [and hopefully cheap looking]. In the first category, she tried on a blond wig that made her look a little too much like a Nashville, gun-toting country singer. Then she tried a wig that was just right, with subtle blonde and light brown — a beautiful, awe-inspiring creation. Eric is THAT good–Lisa only had to try on two wigs to find the perfect one.

Then we tried on the fun wigs–mostly in red. There was a short, spiky, bright number that was a little too Reba, its blonde twin that was a little too Long Island desperate housewife and then a very nice, deeper red, longer wig that was a bit too European feminist filmmaker. We called this last one–Chantal. We were deciding between Chantal and Reba when Eric pulled out a funky-but-cool platinum blonde wig with dark roots. Yes–roots! They make them with roots. On purpose! The minute this was settled on Lisa’s head, we knew it was right. It suggests LA glamour, motorcycle ownership, tattoos and a diva-ness just this side of knowing deshabille. We call her Krystal. Yes, that is Krystal with a K….

 

  1. Kathryn Schwarz

You’ve heard the big huge important thing from Lisa herself–she busted the prognosis paradigm, and it seemed fitting that she should break the news–so my only task is to share a few memorable lines and some stray pieces of information.  Most of the lines were spoken by the godlike being who walks among us as Dr. Shapiro.  (He obviously does find himself quite divine, and who are we to argue?)  Here’s the first:

“You’re completely clear.  It’s one hundred percent.”

[This was grand, but a bit baffling, as he hadn’t yet told us the pathology report was in.  Or indeed said hello.  It took Lisa a moment to pin down the signifiers, which caused Dr. Shapiro to say this:]

“I’m underwhelmed by your response.”

[The demigod seemed slightly hurt.  In an attempt to comfort him, Lisa said that his incisions didn’t hurt at all–probably true enough, if one thinks of them only as *his* incisions–and that her pain came from the radiated skin.  He was delighted, but was also reminded of his colleague, which led to this:]

“The Great Formenti will take all the credit.”

[To be fair, he may not have said the precise words, “take all the credit,” although if he didn’t, the subtext was erupting into the surface narrative.  I pause here to observe that “The Great Formenti” may be the best appellation yet.  Lisa, still in full possession of her social graces, said that her doctors have all been amazing, which led to this:]

“Madonna wouldn’t have gotten faster treatment.”

[Here again I may be reaching for subtext, but I’m fairly sure “faster” also implied “better.”  And here again, who are we to argue?  Except of course with the suggestion that Madonna could ever aspire to Lisa’s place in the cosmic hierarchy.]

Dr. Shapiro also, in a more serious vein–although still dancing, with movements I would describe as more soft-shoe than skip–said “we only see this kind of result every couple of years.”  He added that sometimes the treatment and surgery results look good, but the pathology results don’t, and it was entirely and rather heartrendingly clear why he was so thrilled:  this was one of the rare instances in which he could give unadulterated good news.  He may have overreached slightly by concluding, “When patients get this result, they live forever.”  However, if he can in fact confer immortality, and if he just conferred it on Lisa, I’m all for it.

One final moment:  when Lisa paused on the way out to schedule her next appointment, the woman at the desk said, “I’m glad you came in.  He’s been running around all day asking when you’d get here.”

Part four: The Twins Today

I (Anna) am delighted to share the news that Lisa and I remain cancer free. But although we are no longer the Cancer Twins, we seem to have retained a sense of medical companionship. Here’s just one example. Recently, I sat in a gastroenterologist’s exam room awaiting the consultation that would prepare me for my first colonoscopy. The procedure is a rite of passage, if you’ll excuse the pun, for individuals in the U.S. healthcare system who reach the age of fifty. I was a little bit afraid of being scolded because–naturally–It had taken me a year and a half to make the appointment. I need not have worried. Doctor Oneto came in and sat down, tucking a pen behind her ear, then began her spiel by imitating the chipper voice of an American sales rep: Now about the colonoscopy, she said. It’s a great procedure! Everybody loves it!

I left her office marveling at my luck. I had chosen Doctor Oneto because she seemed popular–the waiting time for an appointment was a month and a half–I hadn’t anticipated that she would be Tina Fey in a white coat. On the way to the subway I looked at my phone and saw several messages that needed answering, gobbets of academic administration best handled at once. But I didn’t even think of dealing with any of them until I’d texted Lisa first, sharing the news that I’d met the gastroenterologist of our dreams. Lisa promptly made her own appointment.

 

Lisa Duggan is Professor of Social & Cultural Analysis at New York University, and author of the forthcoming book Mean Girl: Ayn Rand and the Culture of Greed.

Anna McCarthy is professor of cinema studies at NYU and editor of Social Text Online.