Author's Note: The following chapter contains medical content some readers may find somewhat difficult to read, regarding the stomach/intestinal side effects from chemotherapy.
I was really glad Karlie had cleared her week between the treatment planning meeting and the first day of treatment. We needed some us time, and we needed some family time. After a brief tour of the infusion area, although we were indeed too late to meet the actual nurses and techs who would be part of my team, we headed upstate so Karlie could spend some time with her parents. From there we flew down to Florida to see my dad and enjoy some warm weather, only it was actually pretty damn cold and we largely just hung around the house, cooking out with my dad and trying not to freeze to death on the boat. We'd just been to Nashville, but we swung past Mom's on the way home, just to check in. At each stop, we had to go over the plans, a deliberate strategy suggested by Kar's therapist as a way to desensitize her to everything, and help her prepare herself for chemo actually starting. Our last stop was the house in Rhode Island, so we could have a couple of nights out of the city, just the two of us. We didn't have time to fly out to Big Sur, though we'd considered it before we realized what we really needed was family. So we did take a couple of days to honeymoon, something we really hadn't done since the wedding, but in the space where we'd gotten married. The plan was to return in a couple weeks for Thanksgiving, with both families gathering for one big Swift-Kloss holiday, assuming I felt up to it. It would be my second week of chemo and first week of radiation, though it wouldn't be a full week since even the radiation techs would take the holiday off, so we had no idea how I would feel. We were hoping I would be up for the holiday, and planning as though I would.
The morning of chemo was bright and clear, but cold. Because it was my first infusion, they wanted me early in the day, giving us daylight hours to try to fix any side effects or reactions. It was hard to really think about the fact that I was about to let doctors put chemicals in my body that they expected to cause more symptoms than the disease was causing, so I tried not to. I just told myself that the worse the side effects were, the better it was working. Not true, but not a bad fiction to tell myself. Karlie made me an omelet, with the theory that once again it would be better to have something in my stomach to throw up if the meds made me sick. There wasn't any joking around that morning. It felt like a pair of zombies navigating around our kitchen, not speaking, but still working together with a familiarity that came from years of cooking together. I still made coffee and cut vegetables, she still made the eggs. We just didn't know what to say, so we said nothing. The silence was deafening, broken only by the scrape of forks on plates, the clink of mugs on the marble counter top. We sat with empty plates in front of us, unsure how to proceed.
She wrapped her arms around me, resting her head on the top of mine. "I love you. This is hard. But you are stronger than you know, and I will do everything I can to make you even stronger. You've got this."
She turned me on my stool and kissed me, gently at first, then with strength behind it. "Don't know when you'll feel like doing that, but know I'm up for it, whenever," she quipped, then kissed me playfully on the nose. And she thinks she's not good with words. She knew exactly the right things to do and say to break the depressed mood we'd both woken up with. Intellectually, we knew this would go better if we could have a positive attitude, maybe even try to have fun with it, joke and dance and play around. But that was all easier said than done. Karlie loaded up a small cooler with flavored drinks, both carbonated and not, and some stomach-friendly foods like applesauce and those little jello cups. She tossed in granola bars and random snacks she knew I liked too, on the off chance that I preferred puking those up instead. It was sort of a foregone conclusion I was going to end up talking to Ralph on the porcelain phone, what we didn't know was how bad it would be, or what, in the end, would make me feel the least awful.
I dressed in layers, unsure whether I would be freezing because hospital, or hotter than hell because poisonous chemicals. They'd told me to dress in whatever made me comfortable, because as long as they could access my port, what I was wearing didn't matter. Mike drove us over, and I was thankful it wasn't a long ride from the house. I knew I would be at the hospital until at least lunchtime, maybe longer depending on how I reacted to the medications. I went straight to the infusion floor, once again one of the first patients to arrive. They tried to always time it like that, both for my comfort and for the benefit of the other patients. This time, for sure, I would be in a private room for my infusion, standard practice for all first timers. After a couple infusions, if I wanted, I might be able to go to a more open section of the floor, where some patients found it helpful to be able to talk to one another, kind of like a support group. I wasn't sure how I would feel, and that was okay, they were flexible and committed to making this process as pleasant as they could. Dr. Miller met us at reception. I thought maybe it was because I was a VIP, but the nurses said she did that for all her patients. In fact, unless there was an emergency situation, they said I could expect to see her every Monday when I came for my infusions. As we walked to my room, I saw her greet several patients just as warmly as she does me, and it was weirdly gratifying to know that the personal level of attention she always gave us was just her standard of care, and not because I was famous, or rich.
My chemo team was waiting in the room when we got there. Dr. Miller introduced me to each of the members of the team, explaining that as much as possible, the people caring for me during infusions would be the same each time so they would be familiar with my particular protocol, from pre-medication to the actual chemo drugs, and with which side effects I experienced and which treatments helped relieve them, so it wouldn't be new discovery every time, and if I was in the middle of a reaction they wouldn't be reading charts trying to figure things out. It was reassuring. I had one main nurse, a very warm and bubbly woman named Makenna who seemed almost too young to be a nurse, though I wasn't about to say that. I also had two techs, Deshaun and Andy, who seemed to be, in addition to medical techs who could do things like access my port and hook up the different meds, the comedic relief. They kinda reminded me of Turk and JD from Scrubs. I was tempted to scream "Eagle" just to see if they'd do it, but apparently they could read the urge on my face, because they did it themselves, which completely confused Karlie who had apparently never seen the show, and made Dr. Miller and Makenna exchange a *look* because they'd apparently seen this routine before, but it made me crack up so hard I thought I might pee myself. It was like all the nervous energy I had escaped in truly hysterical laughter, which confused Karlie even more, because she had no idea what was so funny, and then my reaction was way out of proportion to the bit, even if you did get it. The extreme variety of reactions seemed to entertain the guys, so they seemed satisfied. It was kind of unfortunate to get down to business, but at least the tension was gone, and I was in a good place to get started. Mission accomplished, Deshaun and Andy.
Andy assured me that Deshaun was the best at port access in the business as he swabbed my chest with disinfectant, making sure it was totally clean and dry before installing the IV. At one point he had to adjust my top a bit to expose more of my chest, and Karlie joked that he'd better keep his hands off her wife, which made him laugh and point out that he was happily married, but it was so good to hear her joke with us. I'd worried about her handling all of this maybe more than I had worried about me handling it, but she seemed to be doing just fine. On the plus side, I actually missed the part where they accessed my port, enjoying seeing Karlie smile and laugh and joke. They started me off with fluids to get hydrated, and then anti-nausea and anti-histamine pre-meds to try to minimize any reactions to the actual chemo meds. I loved the theory, but didn't have a lot of faith that they would actually keep me feeling good. I spent a bit of time letting those flow through my veins, the only side effects so far being a bit of sleepiness, while Karlie and I picked out a movie to watch. We figured something distracting and funny would be best. Having felt pretty bad during the radioactive iodine treatment, I knew reading and puzzles and that kind of thing wasn't going to work for me if I felt sick, but watching something might help.
It turned out, we watched the entirety of both Big Fat Greek Wedding movies without anything all that interesting happening. About a half hour after the pre-meds, they brought in the big guns. Other than a slightly weird taste in my mouth, easily masked by sipping the flavored drinks, it wasn't much different than any other IV med I'd ever gotten. I was initially cold, which was nothing new, and I did begin to feel warmer and warmer as the treatment went on, but not like, I have to get naked now levels of warm. Karlie reported my cheeks were flushed when she went to grab a snack in between movies, but not alarmingly. Makenna, Deshaun and Andy all stopped by regularly to see how I was doing, but I didn't have much to report until the infusion was almost over. With just a tiny bit of liquid left in the bag of medication, I felt the first wave of nausea crash over me. It was so fast and out of nowhere, I had no time to react. I was going along just fine, having finished the second movie and just cuddling with Karlie while we decided what to watch, and then I was puking, violently, with no way to even try to control where it went. It had mostly landed on the bed, which was both disgusting and horribly embarrassing, but at least I'd missed Karlie, who had dutifully held my hair as soon as she realized what was happening, and pushed the call button to the nurse's station which sent Makenna running in.
Her first goal was to give me a bin to aim at, but as soon as she'd thrust it into Kar's hands, she set about getting some more anti-emetics into my line to try to help. The upside of such violent expulsion of everything I'd eaten was that it subsided almost as fast as it started, leaving me shaky and on the verge of tears, with my stomach still roiling but without the imminent threat of emptying out. I was mostly embarrassed not to have even known it was coming, but Makenna assured me that it wasn't weird, and that it happened to lots of patients. I don't know if that was true, but it helped, a little. The problem was, there was now puke on my pants, and it hadn't occurred to me to bring extra clothes. Karlie helped me off the bed, carefully avoiding the worst of it, and helped me into the bathroom to try to clean up. I slipped off my sweatpants, intending to try to clean them off in the sink so I could get home without getting vomit in the car. Unfortunately, that was the moment I discovered that chemo wasn't content to just eject everything I'd eaten out of my stomach, it felt my intestines should also join the party. At least I was already taking my pants off, and in a bathroom. I'm not sure I would have ever left the hospital out of sheer humiliation if I hadn't.
There are few markers of true love more evident than enduring your wife's vomit and diarrhea back to back, live and in person. I'm sure Karlie was grossed out. I was, and it was my mess. But she stuck by me, until I was done emptying out at both ends. And then she handed me a pair of scrub pants, thoughtfully donated by Andy, whose build made our butts almost the same size. My outfit clashed horribly, but at least it didn't have anything gross on it. I still kinda wanted to cry, but I was almost afraid to let anything else, even tears, come out. I just wanted to go home, but I still had an hour of post-treatment observation and hydration to go before I could leave. I wanted to lay my head in Karlie's lap, and I guess she could sense that, because even though I hesitated for fear of getting sick again, she pulled me in and laid me down, gently stroking my hair and telling me it was okay, she didn't care if I puked on her, because she loved me. I didn't empty at either end for the rest of the hour, or the drive home, but I never knew it was possible to feel that awful without actually getting sick. I wasn't sure which was worse, the projectile vomiting or feeling like I wanted to but not. Even at home, it was a constant battle within me to decide if I was actually going to be sick or merely extremely nauseous. I hadn't felt up to stopping to pick up my prescriptions, and once we got home, Karlie didn't want to leave me to go get them either, so we finally sent Jeff out to get them before telling the team to go home, since we would definitely not be going anywhere once I had my meds. I couldn't imagine even leaving my room, never mind going somewhere I would need security.
I spent most of the afternoon alternating between sleeping and wishing the nausea would relent enough to let me sleep. I wasn't really sure the tablets I had to swallow were doing much since it seemed like they just came right back. I wondered if that was why there were so many of them. So that I might get something out of one of them if it ever stayed down. I had skipped lunch entirely, at the hospital, but Karlie insisted I try to eat something in the evening. I managed a little rice and some applesauce, but mostly I was just miserable. I only actually threw up twice at home, both times on the heels of taking my meds, but I felt on the verge of it for most of the day. Kar was awesome, always ready to help if she could, willing to carry a bucket for me so I didn't have to try to dash from the couch to the bathroom. They'd told me chemo often caused fatigue, but I had been unprepared for just exactly how draining it was. I was absolutely exhausted, even when I couldn't actually sleep. When it came time to go upstairs and actually go to bed, I made it about three steps before she scooped me up bridal style and carried me, even holding me up while I brushed my teeth and helping me slip into a cozy night shirt. I'd made it almost an hour just before bed without really thinking about my stomach and so I laid down thinking maybe the worst was over.
I didn't know what to do. Taylor was the sickest I'd ever seen anyone. Once it hit, there was no turning back. We'd had such a good morning watching movies and cuddling. She'd made it almost all the way through the infusion without any major side effects, and I guess somehow I let myself think maybe she'd get off without anything awful. I was wrong. So wrong. And there was nothing I could do to help at all. One moment we were trying to figure out what to watch and the next it was the opening scene from Pitch Perfect. And just when she got that to stop long enough to get into the bathroom and clean up, my poor girl barely made it before the rest of her digestive system decided to rebel. The worst part for me was seeing how embarrassed she was about something she had absolutely no control over. She felt sick, and that sucked, but she also looked like she just wanted to cry, and I couldn't do anything about that either. All I could do was lay her down in my lap and try to let her know that nothing, not even vomit, could make me not want to be with her. I was honestly relieved when I got her home and she was able to sleep some. I figured sleeping would be better than being awake, at least asleep she might not be totally miserable. It was still a very rough afternoon. I had to hang up on her mom at one point when I heard her get up to throw up again. Holding her hair, holding her, that was all I could do. That, and try to make her eat, and keep taking her meds, and drinking fluids, even when she didn't want to. I have never been more relieved as I was when it seemed like things finally calmed down for about an hour before she decided to call it a night. I tried to get things together in case it didn't last, but I was pretty happy to fall into bed next to her for the night.
* * *
When I woke up at around two, Taylor's side of the bed was empty. I couldn't believe I hadn't felt or heard her get up. I felt worse when I realized she was lying on the bathmat, a folded towel as a pillow, her robe draped over her as a blanket. I figured she'd felt sick again and gotten herself to the bathroom but been too tired to get back to bed, or maybe felt too sick to risk the distance. As I approached, planning to pick her up and bring her back to bed, it struck again, and I rushed to hold her hair while she deposited what little remained in her stomach. When she was done, she told me how it had gotten worse since she woke up, and I decided it was time to call the hospital and see if there wasn't something more we could do. Taylor fell back asleep while I waited on hold for the nurse to check with the on-call oncologist and call in a prescription to the hospital's in-house pharmacy. Problem was, it was nearly three a.m. and I couldn't leave Taylor to fend for herself while she was so sick, but we'd sent security to their own homes so I didn't have them to send out to pick up the new meds either. So I decided to take my big brother up on his offer to help. I never imagined I'd have to call in the favor so early in treatment, but Derek had assured me that if he was in town, he would do anything he could to help us out, and this was something he could do to help.
He picked up on the third ring, voice thick with sleep. I could hear Nick in the background asking if everything was okay. Derek had known I would call, even if I didn't know it myself, and had programed a special Karlie ring into his phone so he would know it was important if I called. They barely gave me a chance to explain what was going on and what we needed before Derek assured me that as soon as they got pants on, they would be on their way. Nick arrived first, texting for the swipe code to let himself in, and I was grateful that we'd had the electronic locks installed so I didn't have to go down to get him. He brought in an air mattress, saying if we were going to lie on the bathroom floor, at least it could be comfortable. Tay had woken up at the text, and despite being extremely tired and feeling really sick, she laughed a little and hugged him, and let him support her to the edge of the tub so she could sit until the mattress inflated and I got a sheet and some blankets on it. By the time I'd finished that so Taylor could lie down again, Derek had arrived with new anti-nausea meds, this time in the form of a patch. I think they left around four, headed home to catch another couple hours of sleep before work, while Taylor and I crashed on the very thoughtful air mattress, thankful that we had nowhere else we had to be.
The patch worked wonders, and although my stomach felt a little off I felt much less like I was actually going to throw up. I was still more tired than I could remember ever having been, even after crazy jet lag or lengthy rehearsals, but I could eat, a little, as long as I went slow. I spent most of Tuesday either asleep or lying down, HGTV playing in the background, while Karlie finished up schoolwork and answered some work e-mails. By early evening I felt relatively good, actually, so I asked Karlie if she would help me film an update for the fans. The last one had simply said that I was doing well after the radioiodine treatment and we were going to find out how well it had worked, and what the next steps were, but we hadn't updated since deciding on a course of chemo. I felt like even though I definitely didn't feel great, I owed it to my fans to let them see me struggling a little. So many of them have told me about the worst moments in their lives, and that I helped them, I wanted them to know that they were helping me too, just knowing they still cared and were praying for me and thinking of me. It was a short video, I didn't have the stamina for much more than a quick explanation of the fact that I'd done my first chemo, it had been rough, I was still feeling under the weather, but I appreciated them, and loved them.
* * *
Wednesday I slept in while Karlie went to class. When she woke me, I thought it was to tell me she was leaving, not that she was back. I couldn't believe how much I needed to sleep, but Karls reasoned that maybe I was so tired because my body was working so hard to fight the cancer. It seemed reasonable, and for the first time in a while, I didn't feel like just moving was going to be enough to make my stomach empty out. Things still tasted weird, and I realized there was a good chance I was going to be stuck with that for a while. I'd seen on a cancer message board that getting chemo was a bit like the worst pregnancy ever, because the morning sickness lasted longer than the first trimester. But a lot of the nausea prevention ideas were the same, like not letting your stomach get too empty, avoiding certain foods that made you feel gross just thinking about them, even craving certain foods and finding weird combinations appealing. I'd thought it was a weird analogy, but since by Wednesday's lunch the only food that I wanted was 'beaners and weans' and I wanted it as fiercely as I had ever wanted any food ever, even though I hadn't had it since I was a really little kid, I figured the cravings part was at least somewhat true. I knew Karlie would find the entire concept of eating baked beans with cut up hot dogs in it utterly repulsive, but I had to have them.
I was half-right. She found the concept pretty revolting, but she was so thrilled to hear I wanted to eat anything, it somewhat overrode her impulse to run away while I ate. The one thing I couldn't handle was plain water, which tasted like chemicals, but as long as whatever I drank had a flavor, I could make it work. After lunch, we had to try to plan for the next few weeks, even though one infusion was not a whole lot of information to plan with, plus I hadn't done any radiation yet. She was scheduled to go overseas to the Adidas headquarters the first week in December, something they'd planned before we knew what the treatment plan would look like. It would be the last infusion of this round of chemo and week of radiation, before a two week break that would conveniently encompass my birthday and Christmas. She didn't want to leave me during a treatment week, but she also wanted to be around for the holidays. And with her role designing the new line besides modeling their clothes, I thought it was important she keep that commitment, even if she didn't make all the stops she'd originally planned, but that meant seeing if my Mom could come into town, because I knew Karlie wouldn't trust just anyone to take care of me the way she would. We put it on the list of things to figure out at Thanksgiving. I was encouraged to be feeling okay on Wednesday, because it gave me an extra day to recover from the infusion by Thanksgiving the next Thursday. I really wanted to get to enjoy the holiday with both of our families. We decided to wait until after the next week to see how it went with infusion two before committing one way or another. We were sure Adidas would understand if she had to cancel last minute, and we didn't want to rule it out prematurely.
The rest of the week was pretty like Wednesday – my stomach settled, but napping was an inescapable reality. I felt better and better, each day we got further away from the infusion, though I could never quite shake the fatigue. By Friday I'd gotten it down to one nap a day, which was an improvement over feeling like I'd developed narcolepsy. I knew exercise was supposed to be good for me, as long as I didn't overdo it, so Friday morning I decided to try just walking on the treadmill, which is where I was when Karlie came home from a much more strenuous workout. I looked up from messing with my iPad, trying to find a show to watch, to see her leaning on the doorframe, all glistening with sweat, her hair a mess from the beanie she'd been wearing, those shiny abs showing through her unzipped jacket. I wasn't sure I was going to have the energy to make it work, but Dr. Miller said once it was forty eight hours after my infusion it was safe for Karlie and I to do whatever I was up for, and seeing her like that, I definitely wanted to find out.
* * *
Saturday, Lily and Dixie were in town, so we invited them over for brunch. It was weird, seeing them again for the first time since the wedding. So much had happened, I wondered if I seemed like a different person. Most of our friends had been seeing me off and on throughout treatment, but since they live in Nashville and I hadn't seen them the last few times I'd been, they were seeing the changes first hand for the first time. Lily had obviously talked to Dixie before they came over, because she insisted she had to wash her hands before she would hug me. It was too early for the chemo to have done much damage to my white counts, but it was good practice. Not to be dramatic, but an infection was more likely to kill me than the cancer was. Lily and I took our naps together in the early afternoon, and then the four of us went on a well chaperoned date to the Central Park Zoo, though Kar insisted on checking with the hospital that the crowds and chill in the air wouldn't hurt me before agreeing to go. There were a few fan shots of us, Kar carrying Dixie while I pointed out the penguins, the two of us walking with her hands in ours, Dixie on my back and Karlie holding the string of a balloon with a sea lion on it. Lily hung back a bit, observing quietly, snapping some pictures herself to post on instagram.
"You're going to be amazing moms one day." Lily was flipping through her camera roll of the day, and browsing what she'd put on insta as we'd gone. "All your fans think so."
She was right, most of the comments were about what an adorable family we made, and how they couldn't wait to see us with our own kids one day. I had mixed feelings, looking at those comments about us as moms. I still wanted that, badly, but with everything going on in my life, it was hard to see that part of my future, when it seemed like so much was standing between now and then. Karlie could, I think, see the change in my demeanor and took a chance to pull Dixie away to go try to find the cats, leaving Lily and I alone in the living room. She'd glanced up when Karlie spoke to Dixie, but it took her a minute to catch my face. I guess I'm not much of an actress, because the bittersweet nature of it was written all over. "Shit, Taylor, I'm sorry. I didn't think, I mean, if you can't, there's always Karlie, or adoption, or...I'm really not making this better am I."
She wasn't, but I was proud of myself. I didn't cry as I told her we just didn't know, couldn't know, until I came out the other side of this. The unknown was always the hardest part, when it came to trying to envision the future for me and Karlie. It was better if I focused on what I could control, the parts of the future I could see, like Thanksgiving, and the break for my birthday and Christmas. That was a far cry from a time when Karlie and I could even think about becoming moms, but it was what I could handle, and I said as much. Lily was really good about listening, she always has been, as a sort of mentor for me. She didn't try to give advice I didn't need, or offer platitudes that didn't mean anything. She just let me talk about where I was and what I needed. It was a conversation Kar and I had had before, and one I'd had with my mom, but not one I was prepared to have that day. I was obviously hopeful that the future held kids for us. I just had to try not to let myself fall into worrying about whether or not there would be a future at all. Lily hadn't heard all the medical details of my diagnosis, and as I relayed all the steps and scans that had brought us where we were, I remembered why we weren't letting just everyone in on the specifics. There was nothing fun about watching her face shift as she realized just how sick I was, just how uphill the battle was. And I could see the struggle as she wondered if we should have really even gone out that day, but didn't want to say it, because it's my life, my illness, and she knew better than to question what Karlie and I had decided.
Despite the melancholy turn, I was glad we'd had a day to just be Aunt Karlie and Aunt Taylor, taking our little 'niece' to the zoo. And when Karlie texted us a photo of Dixie sound asleep with her head on Meredith, clutching Olivia like a stuffed animal, it helped shake off any lingering sadness. If Karlie could see evidence of what we'd discussed in my face or Lily's she didn't say anything and instead suggested we order pizza, real, carbalicious pizza, gooey with cheese and sauce, the kind she almost never let herself eat, especially when she was working. By the time we made our way through a couple slices each, followed by ice cream sundaes, we were all back in the mood we'd been in at the zoo, relaxed and happy, able to enjoy watching Frozen for Dixie's seven millionth time (according to Lily, anyway), all cuddled up on the couch, four humans and two cats. And yeah, I wanted that with my own kid someday, and this time, it helped make me more determined than ever to make that happen, so it turned out to be a good day after all. Seemed every day went like that these days, like a bit of an emotional roller coaster, but I was thrilled this one ended with an emotional up rather than a low.
Author's Note:
Wow, more than 6500 reads, and more than 380 votes! I am constantly amazed when y'all read and vote, and I thank you from the bottom of my heart for that.
If you follow my tumblr you know I accidentally spent five hours playing Cards Against Kaylor the other night and nearly didn't get this finished on time, but I hate to miss a deadline! So here it is, a little short, but it didn't make sense to roll into the next week, with the second infusion and start of radiation and a Very Kaylor Thanksgiving coming up and needing their own separate chapter. So there we are.
Special thanks to Starbucks for letting me mooch their wifi for a portion of the writing of this chapter, and for providing blessed caffeine.
I'm on vacation later this week (hallelujah!) which either means I'll have lots of time to write and get the chapter done early, or have no time at all and end up hopelessly behind. Follow princessandsunshine on tumblr if you want to know where I am with that. And also if you want to see the mishmash of my real life and kaylor all squished into one blog, lol.
Love you all so much, hope you have a fantastic week! I know we're all hoping a certain giraffe will return from Oz to celebrate her koala's birthday, but if she doesn't here's hoping we at least get a lovely FaceTime date with a sunset and sunflowers to mark the occasion. Until next week...