Getting A Mammogram Saved My Life 

“Do you and Aari have any special plans now that Simon is in college?” my friend Amy asked.

“We’ve made doctor appointments together. Mammograms and dermatologist,”  I answered. “That’s love.”

Two days after dropping Simon off,  my wife, Aari, and I sat together with our robes on, waiting to have our breasts squished. Even though we were in a medical facility, we were enjoying hanging out, just the two of us. I was accidentally dropping pretzel crumbs everywhere as we snacked. We needed new patient portals and I was overly pleased with myself that I made my ID name, “TITS24.”

Aari has ultrasounds as a regular part of her annual exams because she has “dense breast tissue.”  Something you didn’t need to know.  My breasts are medium, pointing down in a cone-like triangle, and I’ve been known to forget and go years between mammograms.  Also something you didn’t need to know, but I’m happy to share. I know at least 11 women off the top of my head who have had breast cancer but it’s never been something I worried about. It felt too girly for me.

But as it turns out, Lesbian and bisexual women have an increased risk of developing breast cancer compared to heterosexual women. Queer women are more likely to possess certain risk factors, including alcohol use, excess body weight, never having biological children, or having children later in life. This, combined with the fact that lesbian and bisexual women are more likely to forgo a doctor’s visit because they fear discrimination,  increases their risk of breast cancer.  I also read a diet high in processed foods and saturated fats, coupled with a sedentary lifestyle, is known to increase estrogen levels and inflammation, both of which have been linked to breast cancer.  Unfortunately for me, lying around eating processed foods is my hook.

If the radiologist sees something abnormal during an exam, they ask for follow-up imaging. This has happened frequently to both Aari and I, with no consequence. On this particular visit, they called me back for a third time for more images. 

The radiologist technician took my breast and put it on the plate and then lowered the upper plate of the machine to compress my breast for about ten or fifteen seconds while she took another x-ray. She instructed me to “hold [my] breath,” but I had already stopped breathing. By the time she said, “you can breathe,” I was panting. (I’ve stopped asking how do you feel squishing tits all day? because no technician has ever responded.)

After the third set of x-rays, my TITS24 were really cold from the machine, and I knew something was afoot abreast.

My radiologist, whom I’ve been seeing for years and never conversed with longer than “Your pictures are clear.” “Okay thanks,”  said, “We found a little something. Do you have time to stay and have a sonogram?”

A sonogram shows the difference between a fluid-filled mass, like a cyst, and a solid mass which needs to be tested to make sure it isn’t cancerous. A technician sloshed warm gel over me and moved the wand all over, just like when looking at our baby Simon when he was inside Aari.  That ultrasound was adorable. This? Not so much.

The technician was delightfully chatty, asking me all sorts of questions.

“I know what you’re doing,”  I said, “You’re distracting me with small talk.”

 She went off to tell the doctor whatever she saw. As I was cleaning the gunk off, she returned and said, ”Don’t bother. The doctor is coming in and is just going to put it on you again.”  

I was lying on my side, which was hurting my back a little bit, when the doctor came in and asked, “See that over there?” She pointed to an image that looked like nothing to me.

“That nodule is what I’m worried about.”  Worried.  Worried.  Worried is bad. 

“Okay,” I said, not seeing anything.  

“Go get dressed, and we will see how soon I can get you in for a biopsy.”

I texted Aari.  “I’m scheduling a biopsy.”  

She came running out in her robe and said, “You just texted ‘biopsy’ to our family thread.  You have to delete it.”  

I didn’t realize that I had accidentally told my prone-to-anxiety son, on his fourth day of college orientation, that I needed a biopsy.  Aari deleted the message off my phone, which actually seemed to work.  She considered that the worst thing that happened all that day, Tuesday, August 27.

I got an appointment for the biopsy two days later.  On my way out, the woman at the desk said, “No aspirins for a week before the procedure.”

“The procedure that’s in two days?”  I asked.  “I’ve taken an Excedrin every day this week.”

“Well, don’t take them anymore.”

On Thursday, at the core needle biopsy, I went in with the attitude that I would try to be entertaining and chipper.  I did an imitation of the ultrasound operator in front of her and the doctor.  

“This is you,” I said, looking at the machine. “Inside voice: Oh you’re screwed.” Looking at the empty table as if a patient was on it, “Outside voice: Do you have any pets?” The ultrasound operator laughed.  The doctor didn’t crack a smile.

I had put a crudely drawn arrow on my chest pointing to my left breast.  The doctor said, “That’s not where it is. It’s on the left side of your left breast.”  Apparently, if you’re trying to make a diagnostic radiologist laugh, your humor has to be medically accurate.   

More gunk on my chest and then, for those medically inclined, ultrasound-guided core biopsy on the left breast upon the 6mm mass at the 2:00 axis using a 15-gauge coaxial needle and a 16-gauge automated biopsy needle.  My diagnostic radiologist stuck me five times with something to get tissues to send off to the lab to be tested. Afterwards, a small metallic clip was placed inside my breast at the site of the biopsy.  The clip helps the surgeon locate the biopsy area.  If you don’t need surgery, you just have a clip in your breast for the rest of your life.

“No swimming for forty-eight hours,” the doctor said.

“Or ever,” I said, “I’m going to my friend Holly’s son’s wedding tomorrow.  Can I do the Hora?”

“Don’t put your arms over your head. You should get the results by Tuesday,” she said.

“So, the longest five days of my life?” I asked.

“I am worried,” the doctor said.  Worried again. “But even if it comes back as something, it’s very small, and it’s going to be okay.” 

At the end of the biopsy, I went back for a 3-D mammogram, so they could have an image of the clip placement. I took a selfie before the squeeze, which the technician thought was hysterical. I guess no one does that. My third big laugh of the day. (Still zero from the diagnostic radiologist.)  

Aari and I went home and I got into bed immediately, feeling exhausted from the poking and prodding.  It took about three hours before my breast started to ache.  

Tick tock tick tock.  Waiting for the pathology report.  I had been anxious for three days already, since the moment I’d been called back for more imaging.

“It’s hard to do two things at once,” I told Aari.

“Two things meaning waiting for the pathology report and anything else?”

“Yes.”

I babied myself with a steak sandwich from Westville Chelsea, Chicken Shawarma from The Hummus & Pita Co, Twizzlers and Raisinets from the CVS, homemade fried rice from Aari, Creamsicles from Lincoln Market, tacos from Chipotle, wedding food, Omakase dinner, and Chinese food from Dim Sum Go Go. I was plumping up for the big reveal.

I wavered back and forth every hour, from feeling one hundred percent sure this was nothing to working on the show rundown for my funeral. It was difficult not to tell everyone this was happening.  I deal with stressful things by blurting them out.  I felt if I told people without knowing the outcome in this case, I would be putting an undue burden on more people than just Aari and me, which didn’t seem fair.  So, I used a rare case of restraint.              

On Monday, if my breast wasn’t still a tiny bit black and blue from the biopsy, I could have let the whole thing go. I might have stopped obsessing  I spoke with Holly’s daughter at the wedding and she had recently had a benign biopsy. I was feeling mildly confident. 

Tuesday morning, September 3rd, I knew my pathology report would be coming in, so I stalled getting out of bed.  I didn’t want to stare at the phone, waiting for it to ring like I was hoping a girl would call.  When it rang at nine, I had yet to feed the cat.

As the doctor was telling me my little mass was malignant, the cat was crying so loud it was as if I was standing on her tail. It added a bit of drama to the call. 

“Sorry Doctor, the cat is crying.”

“What?”

“Nothing.”

 “I was talking about ductal carcinoma.”

“Uh huh,”  I could hardly hear her.

“You need to call the office for an MRI, and I’ll call you back with a surgeon’s name.”

Her office asked me if I wanted to wait for insurance coverage to be approved, and even though I would be up to six thousand in diagnostic fees, I said I’d like to get in as fast as possible. The MRI appointment was made for 9:30 the next morning. I made an appointment in six weeks with the doctor-recommended surgeon. 

My official diagnosis was “invasive moderately differentiated ductal carcinoma with micropapillary features, and necrosis, in the upper outer left breast.”  She just as well could have told me there’s a duck up my ass, and they need an MRI to see how far up.

I had prepared myself for the report to come back negative, to be able to joke about it with my friends, and celebrate with pizza. But, no. I’m the 1 in 8 women that has breast cancer.   

 I Facetimed my son, and he said, “Bro, I’m gone for one week….”

Others were almost as clever. “This is a dramatic way to get people to join your Substack,” my friend Jenny wrote to me, after I posted my diagnosis on my personal blog and Facebook. My friend Nancy texted, “This is the worst piece you’ve ever written.”  

Soon enough, I was lying face down on the table with my breasts hanging into two slots made for, um, breasts. Halfway through the test, some dye was administered intravenously through the IV that the humorless lady had put in my arm.  When I got home, I ordered a classic pizza and a crispy chicken parm sandwich from Emmy Squared while I waited for the doctor to call with the MRI results. No reason I shouldn’t eat as much as I could.

 Aari took the notes, filled out the forms, and asked the doctors questions.  I was the person taking selfies and trying to make everyone feel fine about my diagnosis. Like Jenny says, “The whole reason I got married is to not do paperwork if I got breast cancer.”

 Aari and I went to see “The Jellicle Ball” and I couldn’t get the songs out of my head.  “Jellicle songs for Jellicle Cats,” I sang as the doctor called in the late afternoon with the MRI results.  She said there was no other cancer found, nothing in the nipples or other breast. Which, of course, is fantastic news.  The background parenchymal was mild.  Didn’t know what that meant. There was scattered fibroglandular tissue.  Didn’t know what that meant either.  But apparently, good news. I took immediate action and made a Murray’s Bagel lunch date with Nancy.

We got another surgeon recommendation from my friend Jodi and made an appointment for Wednesday, September 11 at Mount Sinai.  Jodi always knows where the best tomatoes are (Marliee’s farm stand), best lettuce (Halsey farm), best corn (Balsam farm stand), best cooked chicken & Challah (Fairview farm at Mecox), and best bread (Armin and Judy bakery in Bridgehampton).  There was no reason to think she wouldn’t also know who the best breast cancer surgeon was as well. 

I worked on a television show for thirty-five years, but I’ve been retired for 9. I don’t want to get a cast together and put on a show anymore, but it feels like breast cancer needs a crew. You got your radiologist, breast surgeon, medical oncologist, the chemo people, the radiation people, the reconstruction plastic surgeon, and so on. 

I found all of this completely overwhelming.  I was starting to lose it.

“Aari! Jellicles can and Jellicles do.”

My hero of a radiologist called to give me more information and ask how I was doing.

“Well, someone stuck needles in my breast but I seem to be fine.” She tittered a little. (Tittered. Thank you.)

Between our son going to college and my diagnosis, Aari and I were a little stunned. My overcompensation was off the charts.  Aari said I was the most animated she’s ever seen me during the biopsy and MRI appointments. I was trying to be very cheerful while my back was out and I was swallowing Excedrin by the handful for headaches. When I get like that, I go into performance mode and ignore Aari, who is then in the position of trying to catch up and understand what’s happening. We both wobbled between manic energy and passing out on the couch.

Aari said, “I’d prefer if you stop treating this like a solo journey.  This affects me also.  We need to work together.”

We decided we should make a list of questions before we went to meet the surgeons. Here was the list:

Aari: “Should she get the Braca gene test?”   Me: “Do you like lesbians?”

Aari: “How much of the breast will you have to remove?”   Me: “Do you like Jews?”

Aari: “How long is the recovery time?”    Me: “Will there be good pain meds?”

“You know what,”  Aari concluded, “I will ask the questions.”

But it was the hospitals who were calling me with questions.

“Are you an Ashkenazi Jew?”

“Why, yes I am.” Thanks for asking. (Hey, you like Jews!)

“When was your last menstrual cycle? When was your first?” Both were long enough ago not to matter. 

Back in the 1980’s, my friend Matt and I went to movies at the Beekman Theater on 66th and Second all the time.  In 2005, it was demolished to make way for the new Everlyn H. Lauder Breast Center at Memorial Sloan Kettering.

It’s a giant new fancy building. Aari had a lot of snarky comments about the design, but it was unlike any medical facility we had ever seen. Breast cancer is big business, apparently.

As the doctor spoke, she made little drawings, walking us through explanations of types of tumors, and how they grow, as she explained why she was recommending each step based on the most recent science. 

The drawings didn’t help me at all, but the doctor told us that I will be completely cured and this will be no threat to my lifespan.  Which is good, since my Oura ring, (which Aari swears by and I have no idea how to use),  already says my cardiac health is six years older than it should be. The doctor said she saw this as an hour and half outpatient operation. A lumpectomy to take out the 1/4” cancerous growth blob, and they will use propofol, like they do for a colonoscopy.  I love that stuff.  I’ll take all the propofol you got.  

Lump, I thought.  I’m lumpy. I was lumping along when I saw a lump of something I couldn’t identify on the street. Lumpectomy.  Okay.

I would get targeted radiation two to four weeks after surgery for four to eight weeks or four to eight weeks after surgery for two to four weeks or something.  After surgery they sent away some tumor tissue for “oncotyping,” and if by chance it came back with a really bad number, they might throw some chemo in before the radiation. 

I would have to take medicine, tamoxifen or aromatase, for five or more years to really make sure the cancer can’t thrive if a cell escapes the treatment.

When we got home, Aari made me steak and potatoes that were incredibly delicious.  I had Oreos for dessert. 

As Aari and I schlepped up to 99th and 5th to the Dubin Breast Center of the Tisch Cancer Institute at the Mount Sinai women’s center for a second opinion, I thought, this is a no brainer, the other hospital is easier to get to.      

While we waited in the more ordinary waiting room, a lady came around pushing a cart and offered us packed lunches. Hmm, I thought, free food. This place may be more my style. 

This doctor said many of the same things as the first, but she had a different style. When I said something off topic, she got us right back on.  She said the outpatient lumpectomy would be a 50 minute operation. They had a great radiation facility two blocks from our apartment, The Blavatnik Family Chelsea Medical Center, which meant I could walk there, and I was trying not to let that sway my choice. 

As I was listening to the doctor explain that I had a choice of whether to get a sentinel node biopsy, I started thinking about lasagna for lunch.  She talked about how they are less focused on oncotyping, and I thought I would be too lazy to go pick up lasagna.  Maybe I should order the pizza I had the other day.

“Would you like to schedule surgery?”  the doctor asked. “No pressure.”

 “Can we have a minute to talk to each other?”

“So what do you think?”  Aari asked

“I was thinking about lasagna.”

That afternoon, the first doctor from Sloan called to tell me she had looked at my images and agreed with my radiologist.  I thought she was very warm and comforting, but we decided to go with Mount Sinai and scheduled surgery for Tuesday October 1.  Radiation would start a few weeks after that.

“I think we made the right decision.” Aari said. 

Three weeks later, I had a lymphoscintigraphy.

The first procedure, to insert a wire into my breast, was at 9:30am. The wire is guidance so the doctor can exactly locate the tumor — kind of a “cut here” arrow. Every time they moved the wire, I winced. There were five women (a doctor, nurses and technicians) all hiding behind a shield as I had eight or more mammogram images taken while seated. By the last one, I looked at my breast sitting on the plate. It looked like a dead flounder.           

Forty-five minutes later, when I woke up, I was surprised to be in pain. My leaving instructions were no showering for 48 hours, keep sports bra on for 72 hours, and wait until after the post op visit to resume aerobics, running, weight lifting or vacuuming.  Rumor has it you never get the ability to vacuum back.

All in all, as these things go, I had an easy time of it.  One hour of pain after the operation and otherwise basically a trouble-free recovery from surgery. I’m sore, but I only took pain pills one day. I wanted to take more, just for fun, but knew that was a bad idea. All in all, my experience was easy for what it was.

Getting a mammogram saved my life. We who have breasts and also enjoy other people’s breasts need to take care of our precious tits. Turns out I will live another year or ten, see my son graduate college, spend more time with my wife, and eat many more baked goods.  I am lucky. 

Barbara Gaines won five prime-time Emmy awards for her work as a producer on CBS’s “The Late Show with David Letterman.” In 2015, NYC’s LGBT Community Center awarded Barbara their coveted Trailblazer Award for her work in the LGBT community. Barbara has been married to her wife Aari for 32 years and together they raised their now 18 year old son.