Chapter 31: BOS
Bucky sat on the exact same table as two weeks ago, once again shirtless, while a technician littered his chest with electrodes above where the ends of his severed nerves had been placed. Now that four weeks had passed since his surgery, they wanted to see if any measurable reinnervation had already taken place. He was asked to flex and move his phantom arm in the same ways as his physical therapy exercises. Bucky couldn't make sense of the little lines appearing on the machine, but he was told his nerves were already transmitting weak signal, just as intended.
"You're doing great. Keep up the physical therapy, and we'll see you again in two months."
Well, that was easy. Getting the electrodes off was a tad annoying, though. Bucky made his way to the waiting room since he knew Steve's transplant clinic would take significantly longer. Fortunately, he'd thought to bring a notebook and pen so he could continue brainstorming for his autobiography. He didn't really know why he decided to attempt this. At first, he'd considered starting the storyboard for a second Barnes and Rogers book, but it felt wrong to start a project like that without talking it over with Steve first. Bucky genuinely believed he had a story worth telling, and the fact that he had over a million Instagram followers corroborated that.
Currently, he was stuck on where to begin the story. His birth? No, there was way too much boring material for the first five years of his life to make it into the final cut. His cancer diagnosis? That didn't lend itself to establishing any of his core personality traits before that hellstorm put them through the wringer. His first time playing soccer? That also didn't feel right. Actually, the moment that truly felt the most like the beginning, the one that set Bucky on the path to the person he was today, was the moment he met Steve. That little boy was his first image of what resilience looked like, and becoming his friend served as Bucky's entrance into the chronic illness world far more than being diagnosed with cancer did.
There was no question about it, his life began when he met his best friend. Sure, it was cheesy, but it was the truth. Soccer, cancer, amputation…all of those came after, and in the end it was only Steve that mattered. Steve, who'd radiated tension and anxiety the entire drive down here and hadn't offered a single update as to how clinic was going. He usually texted at the halfway point to at least offer an estimate of when he'd be done.
When he finally emerged, it was with a noticeable slump in his shoulders. "What's going on?" Bucky asked him immediately.
Steve either didn't hear him or elected to ignore him. "How was your appointment?"
"How was yours?"
"I asked first."
"No, you really didn't. Mine was fine. They measured my nerve activity and showed that they're started to transmit to my muscle as they're supposed to. Your turn."
He looked like he was about to burst into tears. "My lung function's been down."
"For how long?"
"About a month."
"A month?! And you didn't tell me sooner?"
"You'd just had surgery. You had enough on your plate without worrying about me."
"Well, now I've just swept everything off my plate and onto the floor so I can have a hundred meals' worth of worrying about you. What is it?"
"We won't know for sure until they can get a tissue sample, but my doctor said he's pretty sure it's the beginning of chronic rejection. I'm going in for a bronch next week. You're gonna have to drive me."
"Oh my God, Steve." Bucky pulled him into a hug and buried his face in his chest. Chronic rejection was the one thing they'd feared above all else. As his five-year transplant anniversary neared, the began hoping harder and harder that he'd be part of the fifty percent not to suffer from it before that benchmark, but evidently their hopes weren't enough to stop the inevitable. Steve had nearly died when they were teenagers, and that almost shattered Bucky beyond repair. The only thing that had managed to put him back together was his friend's survival and recovery.
Mere minutes earlier, he'd concluded that his story began with Steve. Now Bucky was forced to wonder…would it end there too?
~0~
Steve hated bronchoscopies. Always had. When he was a kid, they fully knocked him out so he didn't experience a second of it, though he would wake up afterward with a killer sore throat and a drastically more productive cough than his baseline. As he got older, they stopped offering him that luxury. In the first two years after transplant, he'd had about half a dozen of them. That one time they failed to sedate him as deeply as usual still lingered in his memory as one of the most unnerving experiences of his entire life. It took everything he had not to literally start shaking all over as they took his vitals. He could see his hand trembling as they secured an ID bracelet around his wrist. His signature on the consent forms looked noticeably shakier than it ever had before. The nurse was one he'd worked with before, but she either didn't notice or didn't think it was worth bringing up.
She got an IV in his left arm on the first stick. Fortunately, he had much better veins than Bucky. He didn't have a port anymore, so they had to get tapped every time he had bloodwork done or IVs inserted. Bucky had been relegated to waiting room duty because Steve didn't want his husband to witness him freaking out if it came to that. So far he'd managed to maintain his composure, but when they took him to the bed in the endoscopy room, his confidence that he'd be able to continue dwindled. While they stuck cardiac monitor electrodes to his chest and a pulse oximeter to his finger, he closed his eyes and focused on breathing. That only made him think about whether or not taking a deep breath felt more difficult than it had three months ago, which reminded him why he was here in the first place and nearly sent him spiraling.
His respiratory rate noticeably picked up when they threaded a nasal cannula under his nostrils. The familiar sensation brought him immediately back to years of end-stage lung disease, a place to which he very well might return. "Mr. Rogers, are you okay?" one of the nurses asked.
"I'm…fine," he assured between gasps. "Can we just get on with it?"
One of them nodded to the consultant and she began injecting things into his IV. The worst of the panic began to fade within seconds. Steve floated on the edge of coherence, and when they deemed him no longer in immediate danger of a panic attack, they proceeded. He could still comply when they asked him to do something, such as open his mouth so they could spray his throat with an anesthetic agent to freeze his gag reflex, but that was about the most complex thought and action he could produce at the moment. The shot of local anesthetic directly into his neck was less pleasant, and brought about a round of painful coughing, but the discomfort quickly subsided, replaced by numbness.
He wished Bucky were here. Having a hand to hold would be nice. One of the nurses gently lifted his head to wrap the strap of the mouthpiece around his neck just below his ears. This had always been his least favorite part. The piece that he bit down on was about as big around as a roll of quarters, and it was supposed to protect the scope from his teeth. But they secured it tightly enough around his head that it felt more like a gag than anything. Thank God they gave him more of the good stuff after that, before they actually got to work.
With all the drugs coursing through his system, he couldn't feel much beyond a faint tugging sensation in his throat and the distant notion that he might be suffocating. But he was too loopy to care. Time drifted aimlessly, and his next coherent thought was waking up in the recovery room with Bucky. Bucky! That was nice. Steve remembered wishing he was here.
"Hey. How you doing?" Bucky asked. He had a notebook in his lap and a pen tucked behind his ear. Steve decided he liked this look. The pen made him look distinguished but spontaneous, like a fun professor.
Steve's throat hurt too much to attempt talking, so he waved his hand in a so-so gesture to answer the question. Better now that you're here is what he wanted to say. In fact, he wanted to say it badly enough that he spoke through the rough ache anyway. "Better now that you're here." Man, he really hated how hoarse and gravelly his post-bronch voice sounded. Speaking woke up his lungs a bit, and he coughed up blood-tinged sputum. Bucky freaked out at that, but both Steve and the nurse who came to check on him a few minutes later assured him it was normal.
He coughed miserably most of the ride home and tried to swallow as seldom as possible, but at least by the time they got back his gag reflex had recovered enough from the anesthetics that he could eat. Steve made sure to test it first by pressing a spoon to the back of his tongue. That was a trick he'd picked up from countless previous bronchs. Bucky made him soup, which worked wonders on his abused throat. He spent the rest of the day curled up on the couch with Bucky watching Pixar movies, but only the least depressing ones. They started with Monsters University, Steve's personal favorite. He liked it for two reasons: firstly because he never got to live a real college experience of his own, and secondly because the entire plot revolved around the little guys standing up to bullies. Steve dozed throughout, but woke up in time for Mike Wazowski's iconic line: "But when you lose, no one will let you forget it."
After that, they moved on to Luca. Neither of them had seen it before, but a trusted source (Parker) placed it confidently in the non-depressing category. Steve fell asleep again with his head on Bucky's good shoulder. He woke up to said shoulder gently jostling him and Bucky calling excitedly, "Steve, Steve, look!"
"What?" he mumbled blearily.
"Look! Disability representation! In a kid's movie!"
Steve rubbed his eyes to clear the blurriness and looked at the screen. Sure enough, one of the animated characters had his mostly empty right sleeve pinned up with a fish hook. "That's great, Buck." Speaking triggered a painful cough, but luckily he didn't bring up blood this time. He resettled on Bucky's shoulder and fell back asleep, only to awake at the end of the movie to find Bucky also dozing, his head leaning against Steve's. He closed his eyes and said a silent prayer that his lungs would hold out long enough for him to experience a few more years of this.
~0~
They both pretended to ignore the pending results of Steve's bronchoscopy. He went back to work, and Bucky went back to attempting to put his life story to paper. Despite their efforts, things didn't feel normal. Bucky was reminded of the two years Steve spent on the transplant list, when they were just waiting to hear if he'd be given a life-saving organ or not. Only this time, he didn't know what to hope for. The options weren't as black and white as last time: transplant or no transplant. This time, they could hope for an acute rejection episode, or chronic rejection, or something else entirely causing this dip in lung function. He didn't know which of those would be preferable.
The follow-up appointment to discuss the results of the bronch arrived a week later. Steve insisted he go alone. Bucky tried to argue, but Steve shut him down immediately. "I need to hear this and digest it on my own before I burden you with it." He couldn't argue with that. While Steve was away, Bucky spent the day attempting to work on his book and failing miserably. He couldn't focus on anything but wondering what expression he'd read on Steve's face when he walked into the house later that day. When he set his pen to paper, he thought about the possibility of having to one day add a chapter about becoming a widower. After that, he curled up on Steve's side of the bed and cried for half an hour.
He did one of his four daily rounds of phantom physio, then took a shower to clear his mind, and it did stave off the worst of the spiraling nervousness. Just as he finished getting dressed, he heard the front door open. Steve didn't come find him to say hello or talk about what he learned. He headed straight for the basement and Bucky heard him start on the punching bag. Deciding to give him some space for this much-needed venting strategy, Bucky settled on the sofa and listened. There he remained until it became clear that Steve wasn't slowing down, and it had been way too long.
Bucky raced downstairs and found Steve working the heavy bag without having taped up his hands. There was blood smeared all over his fists and the bag, but Steve either hadn't noticed or didn't care. His breaths sawed in and out of his chest painfully, and when Bucky shouted at him to, "Stop it!" he didn't even falter for a second. Bucky moved forward and shoved him out of the way, planting himself between Steve and the bag. The exertion set his phantom arm on fire, but it was worth it to prevent Steve from hurting himself further.
Steve's bloody hands remained curled into fists by his side, and his whole body heaved with the force of his panting. Now that Bucky could see his face, he saw the tear tracks. "Steve, you can't hurt yourself like this," Bucky said, as calmly as he could manage. He pointed to his hands. "Now let me clean those up so you don't get an infection."
Steve's expression turned from furious to hollow, but he nodded in acquiescence. Bucky gently guided him upstairs to the bathroom and pulled out the first aid kid. As he began cleaning and sanitizing the split knuckles, he asked, "Do you want to talk about it?"
"They confirmed BOS," Steve said tightly.
Bronchiolitis obliterans syndrome. Scarring of the small airways which led to limited airflow and loss of function. Present in half of all lung transplant recipients within five years of surgery, with a mortality rate upwards of sixty percent. It was something they'd always known might lurk in Steve's future, but seeing it become reality was terrifying.
"Did they say how long?" Bucky finished washing the blood off the first hand and moved to the second. With his hands clean, it was much more obvious just how much damage Steve had inflicted. Hardly any skin remained on any of his knuckles.
"Median survival is three to five years." He delivered the line flatly, distantly, as if it was someone else's life he was referring to.
Frankly, that was longer than Bucky expected to hear, given the state of Steve's hands. He had every right to be angry, but taking it out physically to this extent was rare for him. "It's okay," Bucky assured. "We'll get through this."
Steve quite literally exploded, ripping his hand from Bucky's gentle grasp and scuttling backwards on the tile floor until his back hit the wall. "You're wrong," he spat. "There is no we'll get through this. I won't. I'll get to this, and that's it. The end of the line. And…and you'll have to go through it alone."
Bucky swallowed thickly. His throat felt full of syrup. Steve was right—well, partially. There was no through for him. But he was wrong about the second part. "I won't be alone," Bucky said. "Do you have any idea how many people are going to be there for us? For me? Steve, if…" Though it pained him endlessly to do so, he corrected his phrasing to reflect this news. "When you die, I will be many things. Devastated, angry, and sad as hell, for sure. But I will definitely not be alone."
"Promise?"
"I promise." Bucky crawled over and inserted himself into the space between Steve and the vanity so he could wrap his arm around his shoulders. Steve leaned into the embrace and buried his face in Bucky's chest. They sat there until Bucky's concerns about the open wounds in Steve's hands outweighed the catharsis of this hug. He cleaned and bandaged them in silence, and when he finished, neither of them knew quite what to do.
"Are there treatment options? For BOS?" Bucky asked.
"They're upping my anti-rejection meds for six weeks to see if it stalls the decline rate, or even reverses it, but they were very clear that this will ultimately be terminal."
"Okay. But more time is more time, right?"
Steve hesitated. "Yeah. Unless it's sacrificing quality of life. I don't want to linger for the sake of lingering."
"Okay. We'll cross that bridge when we come to it."
He nodded resolutely. Steve stood from the floor and turned on WHiH in the living room. Bucky listened for five minutes before he couldn't take it anymore. After what he'd just heard, no other news could possibly matter.
~0~
On his run the morning after the appointment, Steve noticed a difference in his respiratory capacity for the first time. The numbers told him he'd been down for over a month, but this was the first time he could actually feel it. Maybe it was purely psychosomatic; now that he knew his lungs had set sail for failure once again, his brain told his body to slow down sooner. Or maybe he'd just finally dipped far enough from his previous baseline for it to impact his performance. Either way, it took him longer than usual to finish his route.
Every time he looked at Bucky, he thought about his meltdown yesterday. Steve didn't understand why this news hit him so hard. He knew it was coming. It had been drilled into his head since he first got listed for transplant that it wasn't a cure, merely a trade-in of one disease for another, and this new disease could just as easily prove fatal as CF. Before the transplant, he'd been prepared to die, long past the anger phase of coming to terms with that. So why now, after he'd squeezed out more years than he was ever meant to get, was he suddenly filled with rage that threated to strangle him from the inside out?
He knew the answer.
It was blatantly obvious.
Steve just didn't want to think about it.
He had so much more to lose now than he'd had five years ago. So much more to leave behind. An ever-growing collection of children that relied on him to guide them through the trials of illness. The family that they'd built from the friendships formed at Gravesen and beyond. A husband, not just a best friend. With the extra years transplant had given him, he'd built a life for himself, and now he'd have to leave it all behind.
He wanted to scream, "It's not fair!" but that wouldn't mean anything. Steve's entire life had been forged on the concept of not fair. This was more than unfair. It was downright mean. Telling Bucky had been the cruelest thing he'd ever had to do. And he was just one person on a list of dozens that Steve would have to break this news to. He might come to terms with this—he'd certainly try to in the years ahead, however many of them he got—but what could he possibly do to help everyone else within the blast radius his death would create? It wasn't like he'd be here to help them after.
Bucky's words kept him from flying completely off the handle. "I won't be alone." None of them would. His parents had each other, and Bucky had the rest of the Avengers. Steve had to trust that they'd get each other through. He only wished there was a way for him to know they succeeded in keeping each other afloat…after. His mother believed wholeheartedly in that sort of thing, but after everything he'd seen, Steve struggled to have faith. He wasn't sure he even wanted to have faith in something so willing to pluck innocent children from the Earth.
The existential dread, coupled with the increased steroid doses to attempt to slow the BOS, plunged him into a black mood for weeks. Regrettably, he snapped at Bucky a few times. Over stupid things like missing a spot on a dirty dish or not doing his PT. Bucky never took the bait, never bit back, even when Steve really deserved it. He'd put up with 'roid rage' before, when Steve's acute rejection episode a few years back put him on higher dose steroids for a while, and Steve was in awe of his patience. Inevitably, he was struggling with his own maelstrom of emotions in the wake of this news, but he gave Steve the space to deal with his own.
Steve was stocking groceries while Bucky did his physical therapy in the living room when he heard a shout. "Steve! I need you to feel this!"
"What?" He threw the last of the perishables into the fridge and wandered out to meet him. Bucky was just standing in the middle of the room. Steve failed to see anything he might need to feel. "What is it?" he reiterated.
Bucky walked right up to him and grabbed his hand, laying it across the left side of his chest. He stared at him for a few moments, scanning for any sort of reaction. Steve felt the slightest of twitches in the muscles beneath his fingers. "Did you feel that?" Bucky asked, his expression the strangest combination of bewildered and proud.
"I think so."
"I think this is the first sign of real reinnervation," he said excitedly. "It's never twitched before when I do PT."
"That's great!" It had been two months since the surgery, plenty of time for some reinnervation to occur according to Darkhölme. "How's your phantom pain been?"
"Still horrible." He didn't hesitate to admit it. But Steve could definitely tell that it wasn't as atrocious as the immediate aftermath. Bucky was off the stronger pain meds, but still took stuff for nerve pain twice a day. "But they say three to six months is the real turning point for phantom pain after TMR."
"That's not too far off." Certainly shorter than three to five years. Steve would hopefully get to see Bucky pain free. He hated the idea of bucket lists, but that was definitely something he wanted to see before he died.
