Salt in My Soul Read online

  And I’ve read so many books this summer: By the River Piedra I Sat Down and Wept by Paulo Coelho, Cat’s Cradle by Kurt Vonnegut, The White Tiger by Aravind Adiga, The Spirit Catches You and You Fall Down by Anne Fadiman (for Stanford), and Joe College by Tom Perrotta.

  8/15/10

  On Saturday, I flew to Oregon with Becca, Willy, and Melanie—SO MUCH FUN! We went to be with Michelle and her family and went biking, toured everywhere (so many trees and meadows and beautiful skies and clean air), hung out by the pool, then went horseback riding. On Monday we went river rafting and it was AMAZING. We drove two hours to the river, rafted until 11:30, then stopped for lunch, but I couldn’t eat because I had left my enzymes in the van. But I did do Cayston and took ataluren. We went back on the raft, going seven more miles down the river. Tuesday we went tubing all together—hilarious! Quite an arm workout. I was so sad to leave.

  One great thing about the trip was that I discovered that coffee makes me go to the bathroom! I would take Glycolax and nothing would happen, then have two cups of coffee and immediately go to the bathroom. I did all my treatments and all my own sterilizing of equipment and everything was totally fine. It made me much more confident about going to school.

  *1 STAR refers to California’s Standardized Testing and Reporting program.

  *2 Mallory wrote this poem at Cedars-Sinai Medical Center, Los Angeles, during one of the earliest of her sixty-seven hospitalizations. Mallory was admitted for a “tune-up,” what the CF community calls an inpatient stay to treat a CF exacerbation, a term coined to make it easier for kids to understand. We say, you take your car in for a tune-up and kids with CF need tune-ups, too. The primary purpose is to get a PICC line (peripherally inserted central catheter), so that intravenous antibiotics can be administered. Mallory was admitted for lung function decline and intermittent fevers.

  *3 Mallory’s treatments changed over time. She started with two treatments a day consisting of inhaled meds, between twenty-five and sixty pills a day, and chest percussion therapy. As she got sicker and her lung function declined, there were longer and more frequent treatments required and a layering on of IV antibiotics.

  *4 a family friend who works as a college admissions advisor

  *5 the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs

  *6 a procedure to reduce or cut off the supply of blood that’s performed by an interventional radiologist

  *7 The head CF doctor at Cedars-Sinai then, later the head CF doctor at UCLA

  *8 the device used to inhale Cayston, another antibiotic

  *9 Mallory had the Delta F 508 allele along with G 542 X. The first mutation was common. The second—referred to as a nonsense mutation—was not. There weren’t any therapies in development that targeted nonsense mutations, so when we heard about a promising clinical trial (ataluren), we moved mountains to get her enrolled. Ataluren was supposed to work by causing the protein-making machinery of the cell to ignore the premature stop signal and continue reading the gene to produce the full-length protein. We hoped that ataluren would increase Mallory’s levels of functional CFTR protein, improving mucus consistency and reducing the symptoms of CF.

  Mal was finishing high school when the Phase 3 trial of the drug started. The trial was designed for patients to receive either ataluren or a placebo for forty-eight weeks at sites across North America, Europe, and Israel. Mallory enrolled at the Stanford site and started at the end of June 2010. We didn’t know whether she got the study drug or the placebo for several years after, but during that first year she had zero hospitalizations, the first time in six years she wasn’t admitted. She also easily gained twenty pounds after years of struggling to gain weight. Eventually we came to find out that she had been on the study drug.

  PART TWO

  I have never met an extraordinary student like Mallory in my twelve years of high school counseling. I wholeheartedly concur with her AP Calculus teacher, who commented, “When I fill out a college recommendation form, I take very seriously the column that states, ‘One of the best of my career.’ ” Mallory will be one of only a very few that will have that box checked in my thirty-three-year career. This is true for both her academic skills and her personal qualities.

  Mallory possesses emotional maturity, genuine altruism, moral integrity, academic genius, effective leadership, and outstanding citizenship that any prestigious institution would desire in a serious candidate. I cannot think of any other student who has made such a significant impact on the campus and in the community with genuine passion, vitality, and commitment. She has my highest recommendation for admission to Stanford University.

  —DIANE HALE,

  Beverly Hills High School College Counselor

  9/15/10

  Moved into my dorm yesterday and spent my first night here! I left L.A. on Sunday morning and drove up with Pidge while my mom and Micah flew up. No room in the car for them with all my stuff. We ate at an IHOP in the outskirts of Bakersfield where it was ninety-five degrees. We saw lots of cows and Central Valley scenery and when we got farther north, it was really beautiful with the lighting and the hills, especially when we were passing this huge reservoir. Sunday and Monday night we all stayed at Uncle Danny’s, so I got to spend time with my cousins Sarah and Hannah and my Aunt Lissa. Monday I got up and ran around in Palo Alto, then went out to lunch with my family and Ali and her family at this amazing bakery called Mayfield, then I went with my mom and dad and Ali’s family to get bikes!! I’ve never had my own bike before!! And then Tuesday, yesterday, I moved in!

  I was shocked by how big my dorm room is! Way bigger than my room at home because they knocked down the wall between two mini-doubles and made it into a big triple. I didn’t even know that Stanford had triples so it was definitely a surprise. I’m also soooo happy with whom they picked as my roommates. Sabrina and Adele are supportive of me and my special needs.

  9/16/10

  It’s Thursday. I’ve been SO busy, I’ve barely had any time to sleep or do treatment. But it’s been fun and new and exciting. I feel like I’ve been here for so long, and it’s not weird to be here. I always thought it would feel weird to be away from home, but it definitely does not. I’ve barely even talked to friends from home because I’m so busy.

  We had dinner and a dorm meeting where we went over rules and policies and did an icebreaker. I did ataluren and inhaled meds while the RA was talking, and this guy came over to me and asked what I was doing, why I was using a nebulizer, what my health condition was, whether it was mild, moderate, or severe, whether I would die soon, how I felt about it all, and whether I believed in God. We ended up in a thirty-minute conversation about God and religion vs. spirituality, and a lot of other stuff that is interesting to me.

  People looked over and clearly wondered what was going on. It was a little off-putting at first, but I told myself to get used to people staring.

  9/21/10

  Monday I started classes!! One of my professors is Tobias Wolff!! He was SO interesting and funny. It’s amazing to have such a famous professor! I’m excited for the class because of him, and because most of the teaching fellows seem smart and interesting, too. I did the first reading assignment and it was really good.

  I had Physics at 3:00. That’s going to be a hard class, I can tell. Actually, I’m supposed to be reading the first chapter right now, but I’ve been procrastinating all day! Because I’m scared it’s going to be hard and that discourages me and I don’t want to have to look around for another class, especially since this one fits so perfectly in my schedule!

  2011

  1/1/11

  I can’t believe it’s 2011! Where the hell did 2010 go?…And now it’s New Year’s Day. So many things to write about—fall quarter, Thanksgiving, winter break Maui trip with the family, winter quarter and being kinda depressed/self-image issues.
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br />   First, I did well on grades the first quarter yay! I got an A– in both Physics and Program in Writing and Rhetoric (PWR), and a B+ in Intro to Humanities. Next quarter I’m taking Poetic Justice (Russian Lit), Intro to Modern Europe, the Problem of God: From Aquinas to the New Atheism (an Introductory Seminar that I think is going to be really bomb), and Sleep and Dreams. I need to make sure I have time to take naps at least like three times a week, and that I have time to exercise every single day, and that I have time to do treatment, obviously.

  If it’s too much, I just don’t know which one I would drop.

  1/20/11

  I’m in such a weird place mentally right now. Lately. I was before I went to Hawaii, near the end of last quarter and during the first week of winter break. And then I went into the sun, into my element, back to my roots with my family, in the place I love, and I felt like I knew myself again. I knew why I was here…why I actually like life. For the smell of the water and the feeling when you wake up and stretch your arms out in bed after a great night’s sleep, and when your family’s nearby and everyone’s getting along, and a really great cup of coffee, and the breeze that whips your hair all around as you drive along in the sunshine. And the sunshine itself, the light and the warmth and the way it shines so much potential onto every day. And then when it’s gone, that potential is just sucked away, it’s a void, it’s worry, it’s anxiety, it’s fatigue, and being sick of everything.

  I’m not sure what’s going on with me right now. I’m not sure if it’s because I’ve got a cold and I’m a little sick so I’m more tired, and I had the huge stressful dilemma of not having a class schedule, being indecisive, not being confident in the fact that I would actually get through this quarter.

  It feels like I’m at the mercy of the professors. I’m desperate, late, not on top of my shit, and already feeling like this quarter will be a failure when it’s barely even started yet. I know I’m feeling this way because I’m behind, because there’s so much work. I’ve come to realize there will ALWAYS be work. The work doesn’t stop.

  What about enjoyment? What about joy? Is there anything we do that’s purely based on physical sensual feeling? What feels good, what tastes good, what sounds good, what we want, what we feel like doing, who we want to be, what we want to choose?

  3/15/11

  I was really nostalgic today and thinking about my entire past in little tidbits…about the randomest memories like Halloween last year with all my senior friends, and hanging out with Becca, Michelle, Erica, and Natasha, and going with my dad to Starbucks on a weekend and just sitting and talking. And having dinner with my whole family. And Maria. And Thanksgiving at Jason’s, and when it would rain in L.A. and it would be so different and I’d come home and get in my sweats and drink tea and watch TV on the couch. And how when I was in middle school, I had these weird conceptions about high school (like that you could talk on the phone, or listen to music, or sleep during class and the teachers wouldn’t care at all, because it was your responsibility whether or not you wanted to learn). And how I thought of college as being SO old, and SO far away, and then it just snuck up on me and here I am. How did I get here?

  6/24/11

  The decision to become vegetarian is something I’ve been thinking about since I was in elementary school but didn’t do it then for two reasons: I wasn’t allowed by my mom (she was worried I’d get sicker if I didn’t have animal protein), and I didn’t know enough to fight with her about it.

  I’ve been learning a lot about the food industry in the United States since I took a class on food science and politics and learned about factory farming.

  It reintroduced the issue of animal rights and the ethics of eating, which I hadn’t thought about in a while. Now that I’m knowledgeable, I can’t say that I care about the treatment of animals and humanity’s impact on the environment while continuing to eat meat without feeling like a hypocrite.

  I do know enough about nutrition to be able to get the protein that I need without eating meat, and I’m dedicated to making it a priority for now.

  7/15/11

  So much has happened since I last wrote. I’m in Hawaii!! I think I’ve been here nine days now. Quick recap of the end of the year: it was a blur saying goodbye to friends at school, trying to see friends in L.A., unpack and organize myself to be ready for Hawaii. Had to bring six weeks of medical supplies plus all my gear from L.A. to Palo Alto and then from Palo Alto to Hawaii.

  It’s amazing how I immediately started feeling better once I got here. I lost myself for a while during the year. But I changed in a lot of ways that were good (becoming more outgoing, more open, discovering what I want to do with my life, what my passions are, figuring out what kind of people I want to surround myself with, learning how to take care of myself, dealing with all the medical stuff, being independent, etc.). But also in some ways that were bad (coming to dread exercise, feeling bad about myself every time I would finish a workout). I lost all drive to exercise, didn’t feel good about myself, had no control over what I was eating even when I knew it would make me feel sick.

  That continued into L.A. but got a little better when I started doing yoga. It sucks because I’m so torn in two directions. I want to feel good and feel strong and healthy, and I feel that way when I’m in good swim shape and I do great swim workouts. But when I start doing that I notice myself bulking up and I realize that in some ways I feel better about myself when I’m more feminine and not so buff in the upper body and athletic and boy-looking. And then it’s like I try to lose weight and eat healthy and all that (not a lot of weight, just like five pounds would be good)—but then if I start to feel sick in my lungs like I’m getting a bit of an infection, or I’m more irritated than usual in my coughing, then I’ll eat because nutrition is therapeutic and fat fights infection.

  So I’m constantly in battle. It’s not even between appearances and health, because, if it was that simple, I like to believe I would just choose health and learn to love my body whatever it looks like. What makes it hard is that I actually feel better with my gastrointestinal system when I’m thinner and eating less (I don’t get acid reflux, I don’t get blockages, I’m not as fatigued, etc.), and I’m able to exercise more, which also makes me feel better. It’s really not just about looks. But then again, when I’m bigger I feel better in my lungs. It’s a huge trade-off.

  I just LOVE being here because it’s amazing how quickly I see the benefits. My mom was here Wednesday to Sunday of last week, and we went on Friday to the north shore. I rented a board and surfed for a while, then chilled, then swam in the ocean, then went paddleboarding. And I felt SO good that night. I was bringing up so much mucus, feeling so clear, not waking up in the middle of the night unable to breathe. The worst thing is when I wake up in the morning and feel like I can’t even stay standing long enough to make breakfast, brush my teeth, get dressed. I don’t have that problem as much here. There’s nothing comparable to the ocean for me in terms of what makes me feel good.

  9/20/11

  First week of classes. I’m praying that I don’t get hospitalized this year. Last year was the first time in six years that I wasn’t admitted! I’m so happy to be back but finding it hard to study and get work done. Having fun but worried about my lung function. Splitting up treatments is not working, because I never do the second half at night. Tomorrow I have clinic at 3:00.

  9/27/11

  My brain is really fuzzy right now because of the ridiculous heat, so I can’t even remember what happened on Saturday…other than I worked out and at night I was chilling in the dorm with a bunch of people and I coughed up a lot of blood (like maybe 45 ccs), and then coughed up more blood at like 3:00 a.m., so I had to stop treatments, and I’ve been getting worse since then. And now my lungs feel horrible…congested, deep mucus that I can’t get out, irritated lungs from trying. I’ve got shortness of breath, blood-tinged mucus, etc. I coul
dn’t sleep last night because I was up coughing.

  My lack of sleep has made me tense and irritable and overly sensitive to things, and Dr. Weill says that if the oral antibiotic Levaquin doesn’t work, then he might want to do IVs, which would be TERRIBLE. It would be the ultimate failure. I don’t get it. I do everything right, everything, and I even gain weight (I’m over 150 again—ew), and I still get worse and worse. It’s not even that I can’t get my pulmonary function test (PFT) up to 3.4 liters—if I got back to that I would be saying hallelujah and thanking God. But I just keep declining despite the fact that I’m doing everything right.

  I’m learning that you can’t just go through the motions with treatment and all the medicines and everything. It has to BE YOUR LIFE. It can’t be just part of life. Inevitably, if you don’t make it your life, then you just get sick again. Whenever I’m having the most fun in my life, my health is the worst, which obviously makes everything stop being fun. Because when you don’t feel well, nothing else can make you happy.

  I got pulled over by the police and got a bike ticket today for running through a stop sign and I just started bawling because I was so overwhelmed and so hot and so tired and feeling so sick and just so behind in everything, and they probably thought I was a crazy stupid little girl who thinks a bike ticket is a huge issue but it wasn’t about that. I had been on my way to class but I just turned around and went straight back to the dorm and cried for a while and coughed up a bunch of mucus and almost threw up and then I got on the floor on the carpet with my face right up to the fan in order to cool down for like ten minutes, and then I realized how pathetic I was being and I got myself up and changed clothes and went to class and was late.

  10/9/11

  It’s been a month since I’ve been back at school. What a whirlwind!