Salt in My Soul Read online

  I want to make the most out of my senior year because after that, either everyone will go to college and I’ll go too, or I’ll take a year off, but either way everyone will separate and it will feel like I didn’t get enough time in high school. Or maybe after this year I’ll be ready to leave. I’m just not ready now. I like living at home, having friends I’ve known forever, and don’t know how I’m going to handle not having anyone I know around me. Starting all over seems enormously difficult. I think that’s why I haven’t been able to make a college list. Because I can’t picture myself at any school…I just keep picturing myself in high school forever. It’s gone by so fast and college will go by even faster.

  10/3/09

  I haven’t written in sooo long.

  Time to think about college apps—Stanford? Or somewhere with parties? But do I even wanna party? Who do I wanna be when I grow up? The one who partied all through college or the intellectual one who never wanted to party? If I’m at a party and I always wanna drink = bad. I don’t necessarily want that, maybe I just want something low-key…maybe I’m not fun….

  On another random note…am I an intellectually interested person? Am I a fun-loving, outgoing person? Or do I lean more toward quiet and reserved? I don’t even know who I am. None of these qualities consistently describes me. I have no clue who I am. What do I enjoy? Sometimes I just enjoy being in my bed and eating, which is why I do it so much and why I hate my body so much because I just eat and eat and eat.

  Maybe this is why it’s so hard for me to write a college essay, because you have to write about who you are and I have no idea who I am. I can’t pick a college because I have no idea who I am. The qualities that people always say I have—that I’m persevering, positive, determined—I don’t feel like I’m any of those things. I happen to have a disease and do what the doctors tell me to do so that I don’t die. I don’t call that persevering. What choice do I have? It’s not noble, like I sacrificed myself and took this on and am bearing the burden so well. I just happened to get unlucky and I’m still alive, so people think I “persevere.” Positive? I guess I seem positive at times. But sometimes I feel like I’m a negative person. Not just about having a disease, but about everything. My hope is that I can learn to always be a nice, friendly, positive person, and lose the negativity.

  Other times I’m happy, and it’s the stupidest, simplest little things that put me in the best mood. When you can drive with the top down, listening to an amazing song, and just be happy, then you must be a person capable of happiness. What kinds of things make me happy? Daytime, but not when it’s too hot. Driving and listening to country music, when I’m not in a rush and there’s no traffic. Laughing really hard. A really good, healthy meal that doesn’t make me extremely full. Actually, eating healthy in general because then I feel like I have some willpower and control.

  As opposed to today…I ate two breakfasts, two lunches, dinner, and dessert. Ew. Carbs and fat. When I have absolutely no control over what I eat it’s repulsive.

  I need some resolutions. I would love it if I could remain a tolerant person. I’ve always prided myself on not being racist or elitist or discriminatory, but I really don’t know what I am anymore. I’m second-guessing everything about myself right now.

  10/4/09

  My treatments are now close to an hour and a half and I can never bring myself to do homework during them so it’s annoying and feels like I’m wasting time. Like right now, it’s 11:30 on a Sunday night and I should be sleeping for school tomorrow, but I’ve been doing treatment since 10:00 and am not even done.*3

  10/14/09

  I don’t know what I’m doing, all my work is building up, I feel like I’ve done nothing, I still have a million college essays, and when I have a ton of stuff to do (like tonight) I sit here instead and write about it in this journal, which is not productive. But I think it helps me mentally.

  While I was doing treatment tonight, my parents came in and started talking about time management and staying healthy…blah, blah, blah. And they told me that I don’t work hard in treatment, which made me SO mad.

  People always say, “When you’re stressed just remember that none of this will matter.” But it will matter. If I am too tired to do a good treatment, like I have been for the past week or two, then the mucus builds up and affects me in every other aspect of my life.

  I am so sick and tired of reading and tests and quizzes and scores. I want to be able to say one night, I’m a little tired so I’m gonna take it easy and watch a movie. Right now every single minute of every day is scheduled, and I hate that. And I’m always late. It’s like a sign of my disorganization and constant stress that I can’t get up in time to get to school on time. I forget things, I lose stuff, every room that I enter is a mess.

  10/18/09

  I think I’m really afraid of change and the future and I hold on to the past. Every time something happens I feel the need to write about it. I always want to have photos and I’m hugely afraid that Facebook could crash and all my pictures could be lost. I don’t ever want to forget anything, and it scares me that things from as recent as freshman and sophomore years of high school and sometimes even junior year are starting to blur in my memory. Even the summer before junior year is pretty vague. I regret not writing more. Because for some reason I want to remember every little detail. Is that normal?

  I don’t want to forget what my favorite song is (though it constantly changes), or my favorite band (Counting Crows), or what books I like, or how I feel about my classes, or what school is like in general, or what I do on weekends and who I hang out with, and what is going on with my family, and who I am close with and who I’m not, and basically all the stuff that goes on. I want to remember all my trips, all my hospitalizations/IV antibiotics, all my adventures with my friends, all the times that are not memorable but just make me happy because they’re simple, normal life moments that are nice.

  I know that college will be amazing, but I haven’t had enough of what my life is now. And a lot of it I don’t even remember. Like Camp Hess Kramer: I remember it was amazing, but it’s a distant memory. And I didn’t write about it at all, so as distant as the memory is now, I probably won’t even remember that I went there in twenty years. Junior and senior years are such a short part of my life, a year and a half of the seventeen years that I’ve lived, and I want to remember more. Or I want to start over and live it over again or go back a few years. I’m just not ready to give it up yet, but my friends seem to be ready to be done. Moving out? I’m a CHILD. It’s a joke to think that I could live on my own. I sit in my bed that is ten feet from the kitchen and ask my mom to bring me green beans. I ask my mom to email my teachers when I get too sick to finish an assignment on time (or when I miss too much school) and I ask my dad for tutoring constantly. I’m not ready to be done with days like yesterday, when my dad and Micah and I went to Best Buy to get some batteries.

  And Maria! Just sitting in the kitchen in the morning, when she asks me what I want for breakfast and I try to be as nice as possible despite my grouchy morning self. I’m gonna miss her so much in college! I just wish my family could come with me to college.

  10/18/09

  I completely forgot to write about my birthday! I hung out with Marissa and Talia and we were gonna go out and do something but it was freezing outside and none of us could drive each other so we ended up putting on pajamas and just chilling at my house. Then at night I went over to Jason’s for dinner and Eileen made a really nice dinner for our families and a few friends.

  10/22/09

  I’m freaking out because I only have one weekend to finish the entire Stanford application. It’s going to be ridiculously stressful next weekend. I’m applying early even though I didn’t initially want to go—it didn’t seem fun at all. But Ann*4 told my mom I should apply there because she said it’s the perfect school for me. I’ve come to under
stand that Stanford attracts the brightest minds, the most well-rounded students and stellar athletes, and offers an impressive array of programs. But the hospital is also a huge draw. My CF protocol calls for monthly visits to monitor my lung function and to prevent progression of the disease, so it would make life much easier to be on a campus with such an amazing CF center. My recurring and frequent episodes of hemoptysis*5 will likely require embolization*6 and there’s a doctor at Stanford Hospital who is widely considered to be one of the top specialists in this field.

  Stanford also has an amazing culture—Division I sports to watch, club sports to participate in, mild weather, and a general culture of athletic activities such as bike riding, running, and hiking.

  Because of my disease I’m not able to travel, which might be why studying foreign cultures is so appealing. The interdisciplinary major in the School of Humanities and Sciences would allow me to study Spanish works of art, literature, philosophy, and current issues that plague Latin American society.

  12/12/09

  I GOT INTO STANFORD!!!!!!!! I can’t believe it. I’m so happy!!! The hard work that I’ve done my ENTIRE LIFE has paid off. I no longer have to have perfect grades. I got into one of the best schools in the country…in the world! What was it about me that made them accept me?? I’m just in shock. And I’m really proud and really relieved and really happy.

  I was at my water polo tournament when I found out. I was standing there in my parka freezing my butt off when I got a call from Solange who said that Stanford had sent emails about their decisions and that she got deferred and she said to check and call her back.

  I was trying to get the Internet on my BlackBerry and it was taking soooooo long to connect, but finally it did and I opened it and read: “Congratulations! On behalf of the Office of Undergraduate Admissions, it is my pleasure to offer you admission to Stanford’s Class of 2014.” My jaw just dropped and I started jumping and I screamed and I told my mom and then my whole team freaked out.

  My mom looked SO happy for me—a surprise given that I know she wanted me to go to UCLA. But she knew my dad thought it was the right place for me and maybe she got caught up in the emotion of the moment. That or she’s a good actress.

  I don’t even remember how or who I told but somehow everyone found out. And everyone started writing on my [Facebook] wall and calling me and texting me to say congratulations, and it was a pretty amazing feeling. It was sweet, and everyone was saying how much I deserved it.

  2010

  4/6/10

  Before starting seventh grade, I came home from four weeks at camp having lost ten pounds from my already scrawny frame, as well as 30 percent of my lung function. On the second day of school I was admitted for my first hospitalization; before that, my lung function had never dipped below the 90s. My parents were terrified, but to me, even though I started out crazy upset, it was sort of an adventure. I got to spend way more time with friends than I normally did, because they came and brought me food and flowers and papered the walls with photos and cards. And I could read to my heart’s desire, something I never had time for with school.

  During that hospital stay, we received bad news, a test result that would change the course of my life: my lungs were colonized with the deadliest strain of the deadliest bacteria known to CF lungs, B. cenocepacia. My strain of B. cepacia, cenocepacia, is most associated with rapid clinical deterioration, high virulence, resistance to most antibiotics, and high post-transplant mortality. It doesn’t start as a superbug but over time it morphs into one from antibiotic resistance. I overheard Dr. Pornchai*7 telling my mom that this was terrible news and that things would be very different for me from then on. I didn’t understand what all the fuss was about, and the adults were happy to keep it that way. I actually felt fine, and by then was ready to be done with this whole hospital business and get back to school. As a seventh grader, esoteric medical terms and distant notions of death meant very little to me.

  * * *

  —

  Now, in the second semester of my senior year of high school, I find myself in the intermediate ICU wing of UCLA’s new medical center. I was admitted after my lung function and weight had both steadily declined for two months, until both were no longer acceptable. Despite the 2,000 calories of lipids being pumped into my veins each day, in addition to the 3,000 calories I am forced to eat, my weight loss continues; the B. cepacia infection is acting up, causing pneumonia, and my body is in full-scale battle mode, fighting it. Disease-fighting processes burn a lot of calories.

  Outside of the hospital, my swim team friends are at the peak of training intensity to prepare for league finals, and prom is coming. Stanford is sending me information about Admit Weekend, graduation speaker auditions are being held, teachers have given up thinking the seniors still care about their classes, and friends are finally putting old grievances aside and making the most of their last few months together. As the days wear on, I grow more oxygen-dependent, experiencing pain with breathing, and am no longer able to walk without help.

  During my third week in this hospitalization, Talia came to visit. She sat at the foot of my bed and we made conversation, although I had to catch my breath after every few words. Two long tubes ran from the IV pole to my PICC line; one was filled with a milky white fluid, pure fat, and the other contained a clear but potent antibiotic. Both were delivered to my heart to be circulated throughout my body.

  That day, a knock at my door announced the arrival of Dr. Pornchai for his daily rounds. He’d been my doctor since Dr. Bowman moved back east to start a new CF center. Dr. P was warm, with a shy demeanor, but he took an aggressive approach to his advanced lung disease medical practice; his knowledge and experience inspired confidence in all of his patients. But that day, he seemed hesitant, nervous. He asked Talia to leave; no doctor had ever asked a friend of mine to leave the room before. Already shivering from fever, my body began to tremble with agitation. What was he about to tell me? Whatever the bad news was, it had to mean my health was not turning around. My mom closed the door. I could see the fear in her eyes.

  “Mallory, your weight has dropped again today, to 136, and your white blood count has climbed to 19,000. The lipids are not working,” he said, in his low voice I’d grown to love. “The results of the sensitivity analysis on your sputum will not be ready for a few days, but you are not responding to the current trio of antibiotics. I’m very concerned. Your case is extremely complicated and I do not have enough experience with B. cepacia to know where to go from here. I have contacted some top hospitals to see what other options we have.”

  His voice broke on “complicated.” In all my time as his patient, I had never seen him look afraid, let alone invoke the help of another center. Doctors do not generally show emotion to their patients, but Dr. Pornchai had watched me grow up. More than that, he had made my growing up possible. And I loved him. In that moment, his eyes began to water. He understood mortality far better than I, having seen firsthand how B. cepacia can reside in stable coexistence in the lungs for years and then randomly, rapidly, turn into a deadly killer.

  Dr. Pornchai performed a bronchoscopy, a procedure that suctions mucus from the lungs and provides a specimen that can be sent out for a more accurate culture. To remove as much mucus as possible in order to help combat the pneumonia, he directed the scope deeper than he normally would have, into the fragile, thin airways at the base of my lungs. A tiny puncture was all it would take for the cepacia to leak into my blood.

  I woke up from the bronchoscopy in a disoriented and feverish sepsis. Four nurses held me down on the bed as my entire body convulsed violently and erratically, while my fever quickly climbed from 103 to 104, then to 105, up to 106. More nurses arrived to cover my face and limbs with ice packs. I remember the pain, confusion, and disorientation, the sea of faces towering over me trying to soothe me, the nausea, the feeling of bathing in fire, and the terror of fee
ling like I was sitting off to the side, watching my body thrash and writhe without having any ability to stop it. My mom was terrified.

  This was the first time CF shook me by the shoulders and made me look it in the eye to see it for what it really was. There was no more sheltering. B. cepacia, a term that once had little impact on me, was now something that weighed on me daily. I learned that my strain can cause cepacia syndrome, which is when the bacteria spread throughout the body and cause death within a few weeks. I learned that my strain is a contraindication for lung transplant because only about a third of patients with cenocepacia survive to the five-year post-transplant marker, and many die from reinfection within a few months of transplant. I learned that my strain is not something to mess around with.

  This hospitalization makes my reality seem sharper and more vicious. Every decision at this point seems significant, every complication more ominous, and every day more precious.

  4/26/10

  So I’m out of the hospital and I went to school today! This last weekend was Admit Weekend at Stanford, which was SO fun. Thursday I got out of the hospital in the morning (wasn’t clinically ready to be discharged but they thought it was important for my psychological health to get to go). Went to lunch with Grandma at Cabbage Patch, then home to pack, caught a 5:15 flight arriving in San Jose at 6:30 and to Uncle Danny’s at 7:30. I went to campus at 8:00 and joined a group of profros (prospective freshmen). Then we saw a group of twenty people going into one of the dorms so we followed them. There was definitely a wide mix of people but they were all nice and it wasn’t awkward, it was fun. Then my parents came to get me because I had to do treatment.

  Both nights I had to leave campus by 10:00 or 10:30 because of treatment, which is kind of annoying, but with two hours of treatment keeping me up late I would have slept the whole next day away. We stayed at Danny’s, which was good because it would have been insanely overwhelming and unsanitary and impossible for me to stay in the dorms with IVs and treatment. Friday I woke up, did treatment, drove to campus to check in, then went to the activities fair. There were a million clubs and activities to choose from and so many people, and it was warm and beautiful out. I might try out for everything and see who wants me and what I like the best.