Salt in My Soul

by Mallory Smith

  I switched majors from Earth Systems to HumBio!*1 It was such a crazy decision, but a good one. I was starting to have all these doubts about Earth Systems and the hard sciences and math required. HumBio is awesome because it’s Evolution, Ecology, Environmental Sciences, Anthropology, Biology, History, etc. It’s a ton of stuff all wrapped up together. Other than the core, I’m also taking an Anthropology class called Social and Environmental Sustainability. It’s going to be a ton of work but I like it. And every reading so far has made me feel like a smarter person and more educated in fields I actually care about.

  I’ve been doing masters swimming and I LOVE it. The coach is super nice…I go every Monday, Wednesday, and Friday. I’m really happy that I planned that into my schedule and have been able to stick with it. I’ve actually gotten in pretty great shape compared to last year. I go to the gym a lot, too, and one day I even ran six miles. I was definitely sweating but I wasn’t dying or anything.

  I’ve been going to club volleyball Tuesday and Thursday nights. Our team is going to be a lot more cohesive this year, and it’s nice to be involved in the decisions of the team and in setting the tone of the team.

  11/19/11

  Had a couple of crazy breakdowns and panic attacks. I’ve been on an emotional roller coaster for weeks. It’s my fifteenth day in Stanford Hospital. I’ve been here since Nov. 4. As it usually happens, I got admitted for a decline in lung function.

  One night I stayed in and cried and drew a picture of me and Micah and felt lonely cuz I missed him. That night I broke down and called my parents and they said to quit something, so I quit my job as an assistant coach. The night of Nov. 3 I broke down but didn’t call them and instead was just sobbing in the lounge thinking nobody would understand. Then emailed for a pulmonary function test (PFT) and got admitted the next day.

  People who have visited—it shows me who my true friends are. Who doesn’t come at all or do anything or even know? Who comes once and that’s enough? Who comes all the time and keeps in touch and makes me feel like they miss me? Life is going on without me….

  11/22/11

  I feel like I’m a fly caught in a spider’s web, and the more I struggle to get free, the more tightly I’m trapped and the more quickly I accelerate my demise. The web is CF, but it’s also my own emotions about growing up, changing, facing the disease with dignity. It’s the difficulty of finding balance between being carefree and being responsible. It’s learning how to treat the disease with the respect it deserves without making it the focal point of my life, ruining my personality, or allowing it to drown me.

  I don’t know why I’m so afraid of EVERYTHING. All of a sudden. I’m afraid of being myself, I think (which makes me worry too much about how people perceive me). I worry that no one will ever love me (which might seem ridiculous, but if I can’t love myself, how could someone else?). I worry that I’m losing who I am and losing the ability to have fun. I fear that I’m succumbing to depression (or bipolar disorder? or just insane mood swings which don’t really show externally but eat at me from the inside?). I fear that the choices I make are going to cut my life short. Would I rather live a long life and modify my expectations for how that life will look? Or would I rather have the “go hard or go home” mentality and go all out, love life, have fun, live like everyone else, not look back, and accept that what happens, happens?

  I just don’t think I can do that. Because if I don’t feel well, I’ll always be sad and afraid and then I’ll just spend more and more time on IVs and in the hospital. Fear that if I can’t drink anymore—because apparently now I’m going to be on voriconazole (an antifungal) for the rest of my life, and it’s very hard on the liver, so drinking is a big risk—then I won’t enjoy college because everyone drinks, I won’t be happy, I won’t have friends or a relationship, and I’ll just be that sick girl.

  Self-doubt because it feels like I literally can’t handle ANYTHING that’s put on me anymore, everything stresses me out. Even PACKING for Thanksgiving stresses me out. I feel like all the threads of my life are just unraveling and I’m standing here helplessly watching it happen and can’t do anything about it. And I’m paralyzed inside my own head and don’t know what the right decisions are.

  My mom always says indecisiveness is a sign of insecurity, because you don’t trust yourself to make the right decisions. I think that’s what is happening to me. I don’t trust myself to prioritize my time correctly. What’s more important? Eating? Sleeping? Treatment? Exercise? Social time? When I give in to the temptation of living a normal life, I sacrifice time I should be spending doing treatment because I want to be with people, whether that means eating or working out or doing homework or partying/drinking or hanging out. It’s so hard to choose sleep or treatment when that means closing the door on developing relationships that I want to pursue because I want to feel connected to this school and to other people.

  I don’t understand why I feel so lonely…I have had so many friends come to visit me here, they show me that they care so much, they seem to love me, and yet I just don’t feel like anyone knows me. They care, but it doesn’t torment them that I’m here…but why should it? Their lives just go on…while mine stops. I’m stuck here, and I’m not getting better, and everything stagnates. And everything in the outside world just keeps happening. Developing friendships was such a huge goal of mine for this year, branching out, making new friends that aren’t just acquaintances.

  When I’m stuck in the hospital I can’t meet anyone new, I can’t participate in campus life, I feel like I’m going to fade away and be forgotten. And then when I’m back I’ll just be some random girl who no one knows and who doesn’t really know very many people. I want to feel connected to the community of Stanford.

  12/19/11

  I’m home for Christmas break. Got here on Friday, today is Monday. I don’t think I’ve ever been so happy to be home, to just hang out, be around my parents and Maria and Micah, to have the time and space to stretch out and be alone but also to be with people I care about. Not to be under pressure all the time and not to feel the need to do anything.

  This last quarter has been hard. I’m going to be on IVs for three to six months, which is a bit funny (well not really funny, more like ironic? A sad twist? Fated? Something I should have seen coming?) considering they told me when I got admitted that first time on November 4 that I would either be doing seven, fourteen, or twenty-one days of IVs max.

  I did those first three weeks, sucked it up, first two were in the hospital, then I went home for Thanksgiving, but I had terrible reactions to drugs and felt like absolute shit. Headaches, nausea all the time, to the point that it was completely debilitating, I was exhausted, I had no energy, no appetite. I was not myself at all. Wednesday of Thanksgiving break, I had heart palpitations, so I went to Dr. Roston (Dr. Pornchai left Cedars, so I am using my parents’ doctor) and he did some tests, but after conferring with Stanford, they decided I was okay and so we pulled the PICC line out. I was nervous to go back to school but also hoping things had turned around.

  I went back to Stanford on Sunday, then playing volleyball that Tuesday night was almost physically painful because I was coughing so much and it was that frustrating cough that’s so unproductive where you can’t get anything up but you just can’t stop, and you just can’t get enough air, so nothing moves.

  Wednesday I woke up with a terrible chest pain, every time I coughed, it hurt, when I breathed in deeply, exhaled deeply. When I did treatment it hurt, when I exerted myself in swimming, it hurt. So I went to the hospital and endured the four-hour clinic wait (terrible when there’s no Wi-Fi or phone service and I was way too exhausted and apathetic and upset and pissed and sick of everything to do work).

  When I was finally in the room with Dr. Mohabir he said I needed to get admitted. I wasn’t happy about this but I trust him. A co-director of the Center for Advanced Lung Disease at Sta
nford, he’s THE B. cepacia expert on the West Coast who happens to be a Canadian workout junkie and ex-archaeologist. On his days off, he’s in the hospital from 6:00 a.m. to 5:00 p.m.; this man puts the Energizer Bunny to shame. I trust him and I love him.

  He wanted me for “observation.” Twenty-four hours max, he said at first but then changed it to forty-eight hours. But no IVs. Just to have a heart monitor, make sure the chest pain wasn’t life threatening. He thought maybe I was having a bad reaction to ataluren, so he took me off it again. I was suspicious but followed orders. There were no beds so I went back to my dorm to get some things. Came back to the intermediate ICU around 9:00-ish. I told my parents not to come since I’d only be there forty-eight hours. Wednesday night and Thursday I watched TV and felt really alone.

  My chest X-ray showed that I had developed a cavitation*2 in the upper right lobe, which is unusual. They didn’t know if it was a pneumonia (bacterial) or a fungal infection; the X-ray doesn’t give all the details. So we did a CT scan,*3 which was also somewhat inconclusive. They decided to do a bronchoscopy, so my mom flew up. But then the day of, they canceled because they realized that with what happened after the last bronch it’s too risky. Instead they chose to treat the cavitation as a fungal infection and impressed upon me how serious it was. It was causing pleuritic chest pain, which means that the fungus was growing up against the lung wall. It’s the kind of thing where if you don’t treat it early enough, it can grow out of control and never go away. And a certain type of fungus is particularly fast growing, and renders you ineligible for lung transplant (immunosuppressants required post-transplant would allow the fungus to spread and kill you quickly).

  I realized this was serious, and they said I had to get another PICC line to do four weeks minimum of IV antifungals. They wanted to treat the ABPA*4 with the prednisone and continue the voriconazole, because my IgE*5 was still rising (a normal person’s is like 200, mine in November at first was 1,004, and then it went up to 1,300), which showed that I wasn’t responding to the treatments, so they had to be more aggressive. The IV antifungals would also fight the cavitation.

  I didn’t feel better after I started these treatments. They sent me home after four days, meds in tow, and I resumed my life (kind of). I worked out moderately, had home health nurses, went to class when I felt up to it, hung out with friends, etc. But I wasn’t feeling better and the nausea continued.

  Got through finals with major difficulty. Extremely exhausted, worried, feeling like a failure. But I did my presentation, finished my entire paper, took two HumBio finals. Then went to clinic for the follow-up and found out that my IgE had risen to 1,800. Ugh, still climbing. Also, white blood count was too high, about 16,000, which shows a bacterial infection going on, too. My chest X-ray showed that the infiltration/cavitation was growing, not going away, which I knew because I could still feel tightness.

  They told me that doctors from Stanford (adult and pediatric), from Denmark, from Toronto, etc., had collaborated about my case, that they had presented it to the national conference or something because it was so complex, and they decided that they needed to treat all three problems at once—the ABPA, the fungal infection, and the B. cepacia infection—each aggressively. They decided on three to six months of IV antibiotics and antifungals, oral antibiotics and antifungals, and prednisone. They asked me if I was willing to do this, and I said of course I was, but of course I started crying as I realized what that really meant.

  Giving up club volleyball and masters swimming is upsetting, but also giving up on sleep with middle-of-the-night IVs. It’s giving up on showers, on feeling carefree, on having the luxury to worry about things like classes. It’s knowing that I’m not going to feel comfortable getting close to a guy because I have way too much baggage—no one will want that. And sex with a PICC line and an IV drip?

  It’s knowing that I won’t be able to relate to my friends because their gossip and their concerns will be so mundane to me. It’s realizing that I can’t put my toes in the sand, go for a long run and sweat out all my toxins, can’t take a super long shower and let the water run over me. Losing simple things that everyone takes for granted represents more loss.

  They also pulled me from the ataluren trial permanently. I left the final appointment with Colleen and Zoe*6 quickly because I was embarrassed to be crying as we said our goodbyes. I get really embarrassed about all these emotions, especially with my mom because she always says I never let any of this stuff get me down, like that’s what makes me a role model and inspirational to people. And I do want to try to keep my head up through these things, I think I have been able to do that, despite the adversity. BUT you can’t just ignore things, sweep them under the rug. People keep telling me that I’ll adjust. They just don’t understand what it’s like to have your life ripped away from you because they don’t realize the things I have to give up when I’m on IVs. And when it’s just for a short time, it’s like I’m just taking a vacation from those things—from being in the water, from playing volleyball, from bike riding, from everything, really. And not only can I not do all of these things that keep me sane, I have all of these worries that are exacerbated when I’m on IVs. I’m hyperaware of my breathing, of how much I’m coughing, how much mucus I have, which I can never move because I can’t exercise. I’m always tired, I get wiped out, my stomach has issues because of all the hardcore drugs, I have to have a freaking PICC line in my arm, which is pretty isolating because it’s strange and intimidating to people. And now I have three IV drugs that I’m taking on top of the oral voriconazole and an oral antibiotic which I haven’t picked up from the pharmacy yet…gahhh, and prednisone, plus all the stuff I was already taking before (including my long treatments).

  * * *

  —

  I’m going to stop wallowing. I’m home for break…want to enjoy it while it lasts, and try not to think about how difficult the next quarter or two will be. I just need to take it one day at a time. Stretch a lot. Shower around the PICC and keep myself well-groomed so I feel good about myself. Try to just be myself and be outgoing and seem happy to other people and maybe I’ll convince myself that I’m not so sad and forget that I might even be scared. I’m living a double life right now, the life that goes on when I’m with my parents and with the doctors and doing treatment (the life of someone with a SERIOUS illness and serious complications), and the life of Mallory Smith, a student, a friend, an athlete, maybe to someone a girl of potential interest, or maybe just that tall girl out there who seems just like everyone else, who goes to class, goes out to eat, goes to parties, goes to the gym, does homework, etc. It’s so funny the things about you that people miss when they just pay attention to your actions and not your thoughts, how much that way of assessing someone conceals.

  It’s so nice to be home. I’ve been sleeping a lot and adjusting to this crazy IV schedule. And hanging out with high school friends, who I’ve missed SO MUCH. Dewey*7 has arthritis and seems in pain. Why is so much falling apart, my body, my dog’s body, my sense of meaning in the crazy scheme of this entire planet?

  2012

  1/2/12

  It’s just so freaking HARD figuring out how to live, because the docs always say not to let CF hold you back, do everything you want to do, and figure out how to work treatments and health stuff in, but it doesn’t work that way. With CF if you want to be healthy and live a long time, you have to devote your entire body and soul to it; you can’t devote yourself to normal things that your peers do and find time for health. Squeezing everything in just doesn’t work. Planning to go abroad is futile, I’m just setting myself up for disappointment, or maybe I could get there but I’d make myself sicker in the long run and accelerate my decline.

  I can’t plan things that other people plan. Like weekend getaways. I can’t plan to party and still do well in school. To travel to third-world countries and do something of significance. To go camping. To get married a
nd have kids. I can’t imagine letting anyone understand the way my body actually works, because I find it disgusting and revolting, so I wouldn’t want anyone except my parents and doctors to understand.

  3/15/12

  I’m so pissed at OAE. They just don’t get how hard my life is. Instead of writing what happened, I’m going to paste in my email exchange with them, so I remember.

  To:<—@stanford.edu>

  Sent: Monday, March 12, 2012 9:41:40 PM

  I was wondering if I could set up a meeting to discuss my grading for Spanish this quarter. I understand the problem in that I have not followed the attendance policy, but I do feel that I can make up work that would allow me to practice/learn whatever was done in class on the days that I have missed—doing a final presentation this week, completing the take-home quiz, watching the movie and writing a summary/mini-essay about it, doing practice exercises on the book’s website that correspond to the days I missed, and if this is not enough, recording myself having conversation with a native Spanish speaker for however long would be required to make up the conversation time I missed in class.

  Thank you so much,

  ***

  From:<—@stanford.edu>

  Sent: Tuesday, March 13, 2012 7:32:00 PM

  Subject: Re: meeting

  Hi Mallory,

  I could meet with you on Friday, but my job as a coordinator is not to bend the rules but rather to stick to them. All I’ll be able to tell you is that you may take an incomplete and make up the missed classes next quarter in Span Lang 15 and/or makeup classes. You do indeed need to complete the assignments you cite below, but in addition you need a total of 27–30 hours of attendance to pass the class. That is the basic rule for the class, even under difficult circumstances.

  I’m so sorry, Mallory, that I can’t offer you an easier option, but I’m happy to support you in any way possible to make the “makeup” process doable for you.