Tomorrow Will Be Different

by Sarah McBride

  Fortunately, by the time of our appointment, we were feeling optimistic that with aggressive and competent treatment, Andy’s cancer was curable. I had finally mustered up the courage to ask Sean, who by now had seen Andy’s records, what his chance of survival was.

  “Eighty to eighty-five percent,” he cautiously offered.

  I felt good about our odds.

  Through our work, Andy and I were keenly aware of the discrimination and mistreatment that transgender people often face in medical settings. In one survey, 70 percent of transgender people reported experiencing some form of discrimination in a health-care setting, including health-care professionals refusing to touch patients. Not every health professional knew we were trans, but some figured it out, and others needed to be told.

  We were also cognizant of Johns Hopkins’s deeply troubled history with trans people. Once a leader on gender-affirming treatment, in the 1970s and ’80s the psychiatric department had come under the control of a right-wing extremist, Dr. Paul McHugh, who, while having no expertise in gender or sexuality research, harbored strong negative feelings toward LGBTQ, and particularly trans, identities. He would not only close down Hopkins’s work on transition-related care, he would also go out of his way to advocate against the rights and dignity of trans people, calling us “caricatures” and “mad.”

  While McHugh, now much older, was no longer the head of the department, he was still teaching at the institution and a towering figure in its work. What if our providers had been acolytes of Paul McHugh’s? What, if anything, might that mean for Andy’s treatment?

  So while stressing and worrying about all the typical things patients and their loved ones must deal with when facing such a serious diagnosis and invasive surgery, with each new doctor, and later with each new nurse, we wondered, What do they think of transgender people? Will they treat us differently if or when they find out?

  As burdensome as these worries were, we decided that the risk was certainly not large enough to give up on the generally superior care that Andy would likely receive at Hopkins. After all, even without the Hopkins history, every interaction at any hospital would carry with it at least some of the fear we felt as we walked into the waiting area for our appointment.

  After an hour’s wait, we were finally taken back to meet with Andy’s lead doctor, a surgeon and the chair of Hopkins’s head and neck department. As he began talking, he immediately put our nerves at ease. Like Sean, he was a confident and reassuring figure.

  He informed us that Andy would undergo the extensive surgery we had already learned about. The left half of his upper tongue would have to be removed and replaced with skin from his forearm. The cancer had, thankfully, not spread to his throat, but it had spread to some lymph nodes. The surgeon would have to remove a decent number of lymph nodes from Andy’s neck, although the total number would be up in the air until they were actually in surgery.

  “Will I be able to speak?” Andy asked, concerned with the ramifications that not being able to talk would have on his career prospects as an advocate.

  “You may have a small impediment, but I think you will regain approximately ninety percent of your current speech abilities,” the doctor told us.

  Again, 90 percent was better than the alternative.

  The surgeon also informed us that the neck surgery would make Andy’s neck cave in a bit, and it would appear skinnier than it did now. And there would be a large rectangular wound, and later scar, on his forearm. Both of us were less concerned with the cosmetic outcomes than we were with the questions about his speech and, of course, his life.

  “We can get you in for surgery in about two weeks. We don’t want to wait much longer,” the surgeon told us.

  Andy took a deep breath. “Okay.”

  Over the next several days, Andy began to prepare for his extended absence from work. After surgery, he would be out of work for his recovery and then, again, for the six weeks of extensive daily radiation and weekly chemotherapy infusions.

  He didn’t like the idea of missing so much work. He didn’t want to be left focusing solely on his cancer. He wanted, needed, distractions. So in the lead-up to surgery, I tried to give them to him. We went out to dinner most nights, knowing that he would be relegated to Ensure and milkshakes for a while after surgery and would have to relearn how to eat with his “new tongue.”

  Just a week before surgery, we went out for our last big date before our lives would be consumed with treatment. Sean and I had been asked to speak at the Human Rights Campaign’s National Dinner, a three-thousand-person gala for the LGBTQ civil rights group that had helped us pass our gender identity bill in Delaware. The organization was excited for our family to be able to talk about the good work HRC had done on behalf of trans rights in Delaware. And the image of an out trans woman and her openly gay brother onstage together provided the perfect metaphor for the larger movement for LGBTQ equality: gay and trans people standing as one family.

  Sean and his husband, Blake, came down from New York. I invited my ex-girlfriend Jaimie, the one who, in breaking up with me, had initiated the chain reaction that led to my coming out, as well as one of my best friends since childhood, Read. And, of course, Andy.

  Andy and me at the Human Rights Campaign’s National Dinner. Andy put on a brave face as he prepared for major surgery to remove his tumor.

  It was a big deal for us to be asked to speak at the dinner. It was the biggest LGBTQ equality event in the country and it would be my first time on a national stage of that kind. I had attended the dinner the year before with White House staffers during my internship but had only dreamed that one day I would be able to stand onstage at the Washington Convention Center.

  Even though I knew Andy wanted distractions, I still worried that the dinner would be too much. I feared that I was being selfish.

  “Are you sure you are okay doing this?” I asked him. “I can cancel.”

  “No. This can be our last hurrah before, ya know…everything,” he responded.

  Maybe he genuinely wanted to go. He certainly wanted to get out of the apartment. But I also got the feeling that he didn’t want to come between this opportunity and me. He was always so supportive of my goals.

  “Plus, it’s a great opportunity for me to wear a bow tie,” he added with a wink.

  Sure enough, that Saturday night, he sported a dapper tux and a bright green bow tie. We were led to our table, near the front of a room that stretched at least two football fields across. I was seated between Andy and a personal inspiration of mine, civil rights legend Julian Bond. Bond had been a leader of the Student Non-Violent Coordinating Committee with John Lewis during Selma and later helped found the Southern Poverty Law Center, the nation’s leading hate watchdog group. He was speaking that evening as well.

  Attorney General Eric Holder, a staunch defender of LGBTQ rights in the Obama administration, opened the evening. Chad Griffin, HRC’s president, gave a rousing speech. And finally, it was time for Sean and me to go onstage. I was excited but could feel the butterflies building.

  The crowd was fired up from a mix of our movement’s success and the evening’s remarks, along with some help from alcohol. We waited backstage as Chad finished up his remarks and the “voice of God” came over the loudspeaker.

  “Please welcome Sarah and Sean McBride.”

  Music started playing and we walked out onto the stage. As I stepped up to the lectern, I could hear the song behind the applause. Purely by chance, it was “Safe and Sound,” the same song Andy had played for me in the car on our first date.

  I had never addressed such a large audience. The general assembly in Delaware paled in comparison. My legs were shaking from nerves. I began my speech, consciously trying to speak slowly and clearly as I recounted my experience coming out at AU and the love and support my family had given me. I talked about our fight f
or legislation in Delaware and the historic year we had just experienced, with both marriage equality and gender identity nondiscrimination protections passing.

  I could hardly see anyone in the audience. It looked like I was speaking to a sea of black except for the occasional light that reflected off glasses, jewelry, or some of the shinier clothing. And just to my right, a few tables back, my eye caught Andy’s green bow tie.

  The tone of my speech was triumphant. I talked about how excited I was for the future. I spoke about how fortunate I felt. But in reality, in that moment, I didn’t feel any of those things. And I knew Andy didn’t, either.

  The words rang hollow for me that evening. I wasn’t excited. I wasn’t feeling particularly fortunate. I worried that my positive tone on the stage would make Andy feel even more alone in his struggle and sadness. And I couldn’t shake the feeling that this might be the last night of its kind for the two of us.

  When I returned to our table, Andy greeted me with a kiss. He squeezed my hand and said, “You were so fantastic. I’m so proud of you, Bean.”

  His eyes were warm, but I could see the anxiety lurking behind them. For both of us, the end of that speech marked the beginning of a new chapter, one neither of us were fully prepared for. We were focused on the first step, surgery, but we knew that would be only the beginning of a grueling several months at best.

  Ten days later, at five a.m. in a dark hotel room in Baltimore’s inner harbor, we woke for Andy’s surgery. Or, more accurately, I woke up. Andy hadn’t slept a wink the night before, and as I rolled over to say good morning, I saw him sitting up and staring blankly into the darkness.

  “What if I can’t talk anymore?” he asked. Clearly, he’d been crying. “Will you still love me?”

  “Of course, my love,” I told Andy in the darkness. “But it really doesn’t sound like that will happen.”

  I was hopeful it wouldn’t come to that, but the possibility had been on my mind. Our boss at the Center for American Progress and I had already started discussing the possibility. “If it comes to it, we’ll all learn ASL,” she had suggested, referring to American Sign Language. “We probably should, anyway.”

  We met my mom; Andy’s mom, Ardis, and stepdad, Richard; and his aunt Carolyn in our hotel lobby and made our way to the surgery center at the Hopkins hospital campus. For the whole drive, Andy never stopped holding my hand. His palms were sweaty and his grasp tightened as we got closer to surgery. By six-thirty a.m. we were all sitting around Andy’s bed in the surgery prep center. Carolyn and I exchanged jokes with Andy, who seemed to be in surprisingly good spirits. Soon enough, the jokes ended when the surgeon entered and approached Andy’s bed.

  He asked Andy how he was feeling, then swiftly changed course to share some developments.

  “Based on scans from yesterday, it looks like the cancer has spread to parts of the other half of your tongue. So we are going to have to remove more than we anticipated.”

  Andy’s eyes widened at the news. “Does that change the prognosis for my speech?”

  “I’m afraid it may. We won’t know for sure until we are in surgery, but it’s difficult to say”—no pun intended, I’m sure—“what your speech will be like at this point.”

  Andy looked at me with tears welling in his eyes, clearly shaken at the sudden realization that these few moments might be his last with the ability to speak. But there was no time to digest the news. Almost immediately, he was wheeled into what would be a ten-hour surgery. The surgeon had just dropped a bomb on us. As we watched the back of Andy’s bed turn the corner, we knew we couldn’t do anything to calm him.

  The next ten hours felt like an eternity. I tried to do some work. I texted his friends and posted updates on his Facebook page per his instructions, but it was nearly impossible to focus on anything as we waited in a bright semiprivate alcove in the larger waiting room. I knew Andy was in skilled hands, but my heart was in my throat the whole time.

  Halfway through, the surgeon came out to give us an update. He was confident they had gotten all of the cancer in the removal of the tongue and lymph nodes. He was now turning Andy over to his colleague, a reconstructive surgeon, to take skin from the arm and rebuild the tongue.

  Another four hours went by. Ardis played on her iPad. Richard slept in his chair. Carolyn and my mom chatted. I could only send the occasional email as my eyes kept wandering to check the time and I wondered when we’d get the next update. Finally, the reconstructive surgeon came in and informed us that the surgery was complete.

  “How does it look, Doctor? What do you think about his speech?”

  Ardis, Richard, Carolyn, and my mom looked up anxiously.

  “I think he’ll regain, functionally, his ability to speak, just with an impediment.”

  Thank God.

  This was the first moment when the potential news felt more positive than negative. Despite my concern that everything that could go wrong would go wrong, the news about Andy’s speech was a welcome alternative to my sneaking pessimism.

  They wheeled Andy into a room in the intensive care unit and the five of us were taken up to see him. Anyone who has ever visited a loved one in the hospital knows the feeling in the pit in your stomach as you prepare to see someone after an accident, illness, or surgery. I wasn’t quite sure what to expect, but I was anxious to see him.

  He was just waking up from the anesthesia as we entered his room in the ICU. The lower half of his head and his new tongue were significantly swollen. He had staples up the side of his neck and a large bandage over his left arm. He was hooked up to a million machines and tubes, including a feeding tube through his nose and a tracheostomy tube that went up his windpipe and exited through his lower neck, allowing him to breathe as his still-swollen, rebuilt tongue blocked the airway in his mouth.

  “You look great, Bean,” I told him with a smile. “They say they got all the cancer, and the doctor says that you should get pretty much all of your speech back.”

  He couldn’t change the expression on his face, but he managed to lift up his right hand and give me a thumbs-up.

  We had made it this far. The recovery would clearly be long and intensive, with the torture of not really being able to communicate through his swollen tongue exacerbating his frustrations. But there was certainly a light at the end of the tunnel.

  Hopkins would keep him for about a week, first in the ICU and then, later, in a private room in a more general recovery wing. We got him a whiteboard so that he could communicate with us, and he had me send pictures of him with messages of love and thanks to a few friends and family, including Sean. He didn’t want anyone to worry.

  Over the next seven days, with the help of a stream of dedicated nurses, Andy’s physical activity increased as his tongue decreased in size and he attempted a little labored speech. Some days I’d sit by his side doing work: Over the previous month, the Employment Nondiscrimination Act had begun to move through a committee in the U.S. Senate and had made its way to the Senate floor.

  As he watched daytime television, I’d sit by his bedside on my laptop, crafting memos and research papers for senators debating many of the same issues we had just forged through in Delaware. ENDA had never passed the U.S. Senate, and while the prospects for passing the House were slim—very slim—we hoped we could at least push the bill through the upper chamber of Congress, building momentum for eventual passage down the road.

  A few days after surgery, Andy’s family returned to Wisconsin, but in their place came friends and colleagues making pilgrimages to Andy’s hospital room to hang out, something that made the days bearable for him. The extended stay meant a nearly constant rotation of nurses. And with each new nurse, the fears that surfaced during that first visit to Hopkins came back. Every time a new nurse would walk into his room, Andy would glance at me with a simple look that said: “Can you tell them?”

  For practical re
asons, it was helpful for them to know that he was transgender. In the split second after I told them, I’d study their facial expressions for even the subtlest sign of discomfort. Discomfort can, even subconsciously, lead to mistreatment. Fortunately, every nurse was a consummate professional, and while we were nervous each time, they all offered no suggestion that they had a problem with who we were.

  A week after surgery, I got the call that both Andy and I had been hoping for: He would be discharged, probably that afternoon. I left work, which I had returned to the day before, and hurried up to Baltimore to meet Andy in his room in the general recovery wing at Johns Hopkins. He would be released from the hospital in stable condition but still with the feeding tube, the large, shallow wound on his arm, and the tracheostomy tube. The tube had to be cleaned with an ominous gray suction machine every few hours to ensure air could pass through and he could breathe.

  Afternoon came and went, and we still waited to be discharged. The hospital eventually told us that the supplies for Andy’s home care were not yet available. Yet they were ready to discharge him, so a nurse gathered up as many supplies as possible onto a cart and wheeled it into Andy’s room.

  “This should hold you over until the rest of the supplies arrive and are shipped to your apartment,” he told us.

  Andy and I both looked in terror at the cart, overflowing with clear plastic bags and containers filled with replacement tubes, food bags, wound dressings, and more. The nurse, clearly overworked and trying to do his best for us in an unfortunate situation, quickly ran me through the steps to clean Andy’s tracheostomy tube, dress his wound, and change his food.

  By now it was dark outside. Andy was giddy with the prospect of getting out of the hospital. I felt woefully unprepared but knew how badly he wanted to get home. And admittedly, I did, too. So I packed his bag and helped him dress.

  In total, Andy had four tubes coming out of his upper body: the feeding and trach tubes, plus two drainage sacks coming out of his neck and collar, which presented a challenge in getting him fully dressed. After a few tries to get his arms through the sleeves, I draped his button-down shirt over his back, clipped one button closed, and attached the drainage sacks onto the shirt with pins. He looked disheveled, but it would do.