Salt in My Soul

by Mallory Smith

  —PAUL MOHABIR,

  Director of the Adult CF Program

  at Stanford University Hospital

  7/28/16

  So much has changed in just the last few days.

  Over the weekend, I started to feel more short of breath but went hiking at Lands End anyway (probably was overkill). It was a really nice day, but too intense, cardio-wise. Monday, I woke up feeling way worse. Luckily my mom was visiting, and just as we were about to pull up to the house after running errands, I felt a bleed coming on.

  7/29/16

  …continuing where I left off last night.

  My mom pulled over on the side of the road because I told her blood was coming and I didn’t want to splatter it all over the car. I grabbed a pill bottle that was inside the cup holder in between the two front seats, dumped the pills out, and started coughing the blood in there. I got myself onto the curb and the blood kept coming—at 20 ccs, it was big enough and unexpected enough to be scary.

  Right then, a woman from AffloVest drove up, bringing my new portable vest, something I’ve been wanting for five years. It was finally here, and I was bent over coughing blood on the street, too exhausted, feverish, and distracted to focus on this life-altering machine.

  When the bleeding stopped, we went inside and she showed me how to set the vest up. I was shivering so I put on my fever scarf—the striped one from the Gap I got so many years ago. Hot tea, a big jacket, my scarf, chills—the telltale signs of fever. I checked my temp and it was 102.3, high but not crazy high.

  My mom and I got into a fight over whether to call the fellow. She sometimes thinks fellows say to come in to the hospital to cover their asses—they don’t want to get sued if you don’t go to the ER and something goes wrong.

  My thinking is, if there’s a protocol that says hemoptysis + fever + multidrug-resistant bacteria + shortness of breath = a trip to the ER, then you follow it. Because even if nine out of ten times it wouldn’t matter if you waited the twelve hours until morning to go to the hospital, there’s the one time it might make the difference between life and death.

  We struck a compromise and told the fellow on call that if he could get Dr. Chhatwani from Stanford’s CF team on the phone, we would do what she said. The fellow called us back and said he reached her and that Dr. C wanted me to go to the ER so I immediately packed my bags. I texted Jack to tell him about the hemoptysis and about the ER visit, and he called and offered to come, which was so thoughtful. He scored a lot of points with that offer.

  The night was uneventful. The ER part went smoothly because I had brought my nighttime IVs from home and I got up to my own room at about 1:00 a.m. I was so exhausted, feverish, and short of breath by that point that I could barely keep my eyes open while they did the admission and asked me all the same questions I answer every single time.

  The repetition of things can be comforting, and it can be infuriating. The fact that things are familiar is what’s comforting. But having to go over my belongings list every single time I’m admitted and having to do it not only in the ER but also again in the room is ridiculous. Having to go through every single medication is a little annoying but not ridiculous. Having to repeat the tests in the room that they already ran in the ER is frustrating and creates unnecessary expense, plus it means I don’t get to sleep.

  My white count was 22,000, so very high. Not surprising given the fever and how I felt. They took blood cultures, but so far nothing has come back.

  I didn’t realize how concerned the docs were when I first got here. I was highly concerned that I had gone down to a lesser IV regimen at home the week before, when I was already unwell, and then got sicker. I began to worry about whether the drugs would be able to get this under control. It seemed like, after getting sick so many times in a row while on IVs, with few changes to the regimen, there was little else they could try.

  The next morning, we saw Dr. Chhatwani and the whole CF team. They explained how serious this was and said they were going to reach beyond Stanford’s infectious disease team to cepacia specialists at other centers (like Toronto), and that they were going to try new things. And they did!

  The next blood draw showed my white count at 17,000. A little movement in the right direction, but I was still having really high fevers. Today is the first day I don’t have a high fever—the highest today has been 100.6. I’ve felt hot and clammy all evening but at least I’m not in the 102s. That’s reassuring.

  * * *

  —

  Wednesday I’m sitting in my room with Coach Bowie, who had come to visit. We had a nice chat, reminiscing about high school water polo days, then he went with my mom to the cafeteria and they were gonna get food and bring it back to eat in the room. While they were gone, I heard a distinctive knock but didn’t put two and two together to recognize Dr. Mohabir’s knock because he’d been on some sort of leave for months. He bounded in and asked if my parents were around so we could have a family meeting. I said, my mom is, and texted her to come back immediately.

  Dr. Mohabir said that my prognosis is not good. People who have been on IVs for THIS long, who are incapable of being off antibiotics, don’t turn around. The bacteria just don’t let up at any point. He said there probably won’t be a time in the future when I’ll be able to stay healthy without antibiotics; he said that the antibiotics are propping my lung function up and keeping me alive. Without the antibiotics, he said, I wouldn’t live for another year.

  He said some people get to the point that they can’t do it anymore. They go off the antibiotics, their lung function plummets, and then they get listed for transplant. But with me, it’s not so easy—no center wants to transplant me. He said he’s talked about me to many centers who said no. They are not excited about me as a candidate, were the words he used. But he thinks Duke, Toronto, and Pittsburgh are three that could still be options. He said he was going to see if they’d be willing to talk with me. According to Dr. Mohabir, the problem is that I’m in cepacia syndrome. A slow version of it. He said that when he tells the centers that I have cepacia and I’m in syndrome, they immediately assume I’ll just die on the table. Because that’s what happens when you try to transplant with cepacia syndrome. The outcomes are just not good.

  Obviously, I don’t want to push to get on a transplant list and expedite that process just to get a surgery I don’t feel confident I’ll survive. I want to prolong my life as long as possible. But at the same time, I feel like as I’m working so hard to stay alive, I need to have some kind of backup plan—I need to know that when the IVs eventually stop holding me steady and my lung function plummets, there will be a center that will list me. At that point, I’ll pack my bags and be on the first plane. I don’t want that to happen anytime soon, but I want to know whether it’s even a possibility for my future. I want to know if there’s a center that will take me, and ideally, which one.

  He said that I should not expect to be off IVs for any significant length of time, and that I should not get my hopes up about transplant. He said they are still tweaking and changing the regimen to fight each exacerbation as it comes, but, looking at things on a macro scale, and based on my last year and what he knows from his experience treating others with cepacia, he believes that my cepacia is now a superbug—and it is not going to get better. The infection is going to take over. The antibiotics are slowing that process down. I will have to be on them as long as I can stand it, as long as they keep working, or as long as it’s safe to (e.g., if I start to have kidney failure, we might need to reevaluate).

  As he was saying this, it seemed like he thought there was a chance I might give up—that I might say, essentially, I can’t do this anymore. I can’t be on these IVs for weeks, months, maybe years more. He said other patients have just “given up” and gone home on hospice. And he acknowledged my quality of life has been shot to hell, even though my lung function is 45 percent.


  Now I feel like I’ve sort of been living in a delusion. When I started my period of sickness one year ago, I kept thinking, for the first few rounds of IVs, that I would get better and bounce back and get back to life. In L.A., I began to lose hope as the months wore on and I got worse and worse, losing more and more strength, more and more weight, and more and more reason to live. Everything was slipping away. I was completely depressed. I was anxious all the time and had no faith. No faith in my body, no faith in the doctors’ ability to fix me, no faith that my life would go back to the way it was.

  But when I moved to S.F., even though I was on long-term IVs, it was like this dormant part of me was awakened again by the simple fact of being around friends. It was like drinking Red Bulls and taking happy pills. I felt like myself again, even though I wasn’t surfing, even though I wasn’t playing volleyball, even though I was on IVs, even though I was away from the beach. I reconnected with my motivated, intellectual side. I got down to business, I finished Susan’s book and did other writing. And I worked out. Set goals. Made plans. Explored the city and deepened my relationships with people from my college community, people I had drifted from when I lived in L.A. It was a beautiful high, a beautiful first couple of months here.

  So, yes, I was living in a delusion. I thought that after a certain amount of time on IVs, I would just miraculously not need them anymore and be better. In reality, when I went off IVs, I got sick two weeks later and was back on IVs four weeks later. I did not get much time at all, and since I’ve gone back on them, I’ve been hospitalized three times. It’s all becoming a blur, and that’s the worst fucking part.

  Anyway. Back to Mohabir’s talk. He said it was time to start living my life.

  This was one of the most emotional talks I’ve had in my entire life. My mom was bawling her eyes out. I was trying to be strong for her, and trying to hold it together, but I was crying, too.

  At the very beginning, back when I was young, I used to cough up blood on the pool deck, but I was naive and excited and happy and growing and changing and trying. Now my heart breaks for that little girl because she thought she had a long future, and my current reality is telling me that I don’t.

  And my heart breaks for my mom and dad. They just want to keep me alive and they will do whatever they can to make that happen. I try to do my part, and I think I do my best. But I also have to live my life. And that’s the part Dr. Mohabir was emphasizing. I think he was trying to explain that I might not have that much time. Because how long can one really be on these IVs? A few years, sure, maybe, that would be a long time for IVs, but a few years is not a long time to live. It’s crazy to think that when I’m around twenty-six, when my friends are moving in with their boyfriends or getting married or starting business school or having kids or getting promoted or doing whatever the hell they’re doing, I could be packing up to move to North Carolina, Toronto, Pittsburgh, or Cleveland. That is such a mind-fuck. Picturing my mom in snow boots would almost be enough to make me laugh, if I weren’t crying. And would my dad come? What about Micah?

  When Dr. Mohabir was talking, he kept circling back to the idea of doing what makes me happy. And I kept thinking about people. Not places I want to go or bucket list things I want to do. It was about the people I love, getting enough time with them. Not feeling like I’m leaving them behind. Or being left behind myself, while their lives all move on. That’s the problem with death. For everyone else, it’s an event, it’s sad and shitty and grief-inducing, but then life goes on. For the deceased, that’s it, that’s the end.

  I’m afraid of what’s to come. In some ways, I feel like nothing will change. When I leave here, I’ll—hopefully—be feeling a little better. I’ll be on a home IV regimen. Ideally, we’ll go on a vacation to Hawaii. Whether or not we choose to take the risk and go to Hawaii, afterward, I’ll come back and still be on IVs. And that could go on indefinitely. Maybe I won’t be hospitalized again for months; maybe it’ll just be weeks. Who knows? Nobody knows how fast this thing will progress. I think we’re all just relieved that my high fevers have stopped and that, so far, there’s no growth in my blood cultures. Which means that at this particular time, the antibiotics are still helping—all seven of them. It’s not feasible to go home on all of them, so we’ll have to figure out a way to send me home with IVs I can manage.

  Dr. Chhatwani rounded the next day and told me that I need to accept more help than I’ve had until now. For example, I might need a home health nurse who comes and does IVs. Or have someone else who comes to help even if they don’t do the IVs. Or have family live in the area to help me.

  Having family stay with me aligns with my goal of having Kona up here (that was one of the things I realized when I started thinking about my time being limited. I want my dog in my life. Literally all I wanted to do when I was talking to Dr. M was to cry into Kona’s fur).

  It was an extremely dire prognosis. But it wasn’t new information. Dr. M was just flicking on the lights so we could see what everyone else already had seen—that cepacia has taken over, and it’s time to figure out a transplant option.

  I realize I want to write my story.

  The thing that I haven’t even processed yet, and I’m tearing up thinking about it now, is that I won’t have a family. I really want to have a family. I want to get married and have kids (or adopt—since I’ve always known I wouldn’t be able to carry my own kids). I have multiple Word documents filled with names for future children. I’ve always loved names. And family. And the idea of having my own kids. I think it’s because I’m twenty-three that this feels like an especially hard thing to let go of. It’s not something I ever foresaw having to sacrifice, for some reason. Which goes to show that some part of me has always been living with the delusion that I’d live a long and healthy life.

  I’m scared. And I think I’m falling in love with Jack. And I don’t know if that’s just because of the shit storm I’m going through, and the fact that he happens to be there, or if it’s him, but I think it’s happening. It almost feels weird that we don’t say the words “I love you,” because our dynamic is so loving. I have to stop myself from saying “love you” whenever I say goodbye or good night. I don’t know if he feels the same way, but I know he has been deeply affected by the events of this week.

  The night he found out I might only have a year left, he cried so hard. I never thought I would see him cry like that, and I was so surprised, because when my mom and I were first explaining things to him, he was sort of staring off into a corner, seeming very distant and apathetic. In the middle of this my dad arrived (my mom had said it was urgent he come). And then as soon as my parents left the room he started crying, and I realized that he had just been trying not to cry. But once he did start crying, he completely broke down.

  That’s a whole long story, though, the story of that night. The short version is: he was devastated, he was crying, he said he didn’t know how to be strong for me. I told him that he didn’t need to be strong by not crying, he was doing exactly what he should be doing as a boyfriend by showing up and calling. I told him he’s doing all the right things, and it absolutely does not bother me for him to show emotion and cry around me. In fact, it was touching to me, because it showed me how deeply he cares.

  I truly did not know how he was going to react to this information. He said he didn’t know if he could ever just be lighthearted around me again, if he could just go on vacation and have fun without just being sad all the time. And I kind of made the comparison that I don’t know if he’s leaving in the fall, and so it’s similar in that I, too, don’t know what the future holds, and I, too, am scared, but that doesn’t mean we should back away from it.

  We talked for a long time. He cried, we hugged, we laughed. The crazy thing is that I had cried all that day, and have cried so many times since that day, but I did not cry one time that night. It was like my body was empty of tears. By the time
he left, he said he was feeling much better, much more optimistic. He said he wasn’t scared anymore and whatever happened, we would tackle it together. It was so incredibly sweet.

  My mom wrote on Facebook so we wouldn’t have to repeat the story over and over:

  There’s no way to sugarcoat this message. Mallory Smith’s long-term prognosis is not good. She has been fighting the worst possible bacteria for a very long time and it seems the antibiotic options that she’s been on have run their course. The doctors are making tweaks but don’t think it’s likely that things will turn around.

  It’s clear that most people don’t understand the severity of the situation because Mallory looks so good and does so much. We felt it was time to let our beloved family and friends know how difficult things are for her.

  The doctors don’t think Mallory’s health can be sustained without IVs so the plan is to keep her on them indefinitely. Hopefully that will allow her to have some quality of life. Mallory wants to do as much as possible for as long as possible.

  The Stanford team is talking to transplant centers around the country to try to find one that will consider Mallory as a candidate. But they are not optimistic because of the bacteria she cultures. We live in hope.

  She has finally agreed to write her story.

  Now it’s 12:30 and I should sleep. I’m sure I left out much of what happened this week. There’s just no way to retain all of this. And I’m pissed that I’ve had to take so much Ativan because it’s messing with my memory.

  8/4/16—Mark Smith

  After Stanford rejected Mallory as a candidate for transplant, citing the risk caused by her B. cepacia infection, I started desperately looking for ways to mitigate that risk. My research led me to an article called “Efficacy of bacteriophage therapy in a model of Burkholderia cenocepacia pulmonary infection” in the Journal of Infectious Diseases by John J. LiPuma, M.D., a professor of pediatrics at the University of Michigan and the director of the Burkholderia cepacia Research Laboratory and Repository.