Walking down the hallway to my room in the B1 wing, I greeted familiar faces that I hadn’t seen since I graduated college in December 2014—my last admission in B1 was my last week of my last quarter at Stanford. Expecting a hospitalization has a strange way of making it feel normal, even though being hospitalized four times in six months at my age is so, so far from normal.
Now, I’m still on B1, on day 6 of this admission. Not a whole lot has changed—I lost the fevers but gained terrible chest pain, improved a little, then got a little worse again. When I’m not walking laps around the fountain in front, IV pole in tow, I’m receiving oxygen in my nasal cannula to ease the shortness of breath and headaches. Visits make the time go by, and I’m so thankful for that. Little things like Philz coffee deliveries and fresh peaches in the cafeteria make my day. Life goes on, with work deadlines still demanding attention.
In so many ways, life in the hospital is like life on the outside. For the most part, my mind focuses on the present moment—my current treatment, my step count, chatting with friends, hanging out with my mom, reading a good book, getting work done, enjoying the sunshine sitting out by the fountain with my feet in the water. It can be easy to forget that I’m receiving big doses of powerful medications that could, one day, stop working entirely.
But then there are times that remind me of the magnitude of the situation, of the fact that these little daily/weekly/monthly challenges—and whether I win or lose at them—could determine my life span. Today I blew as hard as I could on my lung function test, and when I saw no improvement from the week before despite four weeks of continuous IVs, a week of hospitalization, and new antibiotics on board, I wondered briefly whether all this fighting is pointless. Will it make a difference which antibiotics we use, or are they all ineffective? Will this disease ultimately do what it wants with me regardless of the weapons we throw at it, laughing at our attempts to keep infection at bay?
If a wave holds you under for too long while you’re out surfing, the worst thing you can do is struggle and fight against the water; when drowning and in danger, the best chance you have is to try to relax, hold your breath, and wait until you’re given the chance to pop to the surface. Sometimes acceptance and ease, rather than force and struggle, are the keys to survival.
A few hours after my lung function test today, one of the medical providers brought up for the first time the idea of placing a feeding tube. Most of the time, with CF, routines are familiar, and the pace of change with the medical regimen is slow—add a pill here, subtract a pill there, add some IVs, undergo some hospitalizations. All of that is very familiar. But when we get a new diagnosis, we have to make sense of a whole new series of reductions in quality of life. When I was found to have multiple pulmonary emboli in my lungs and had to start blood thinners was one of those times. When my hemoptysis first began to worsen, and I had to reimagine a life never lived more than an hour from a major medical center was another one of those times.
Having to get a feeding tube, which would add complexity to my regimen and force me to cede control over another aspect of my life, would also be one of those times. The news was startling, as I look very healthy and am at a healthy weight. I told her: I want to wait to do that until I really really need it, and I’m just not there yet. But the provider explained that oftentimes, patients wait too long to get a feeding tube placed, until they “really really need it,” and by then, it’s too late—their respiratory status has declined to the point where surgery to implant the tube is no longer safe. Her explanation was informed by the knowledge and expertise she’s gained working with hundreds of patients, whereas my interpretation of the wisdom of my getting a feeding tube was informed only by my own clinical history and an aversion to discomfort.
One of the difficulties with CF is that progressive decline is inevitable, but the rate at which the decline will happen is unpredictable. I could have five good years left with relatively stable lung function and weight. I could even have ten or fifteen or twenty good years. Or, my infection could rapidly worsen, my lung function and weight could both plummet, and at that point, this provider would be right, it would be too late to place a feeding tube. As patients, we have to make decisions balancing two often-disparate goals—maintaining current quality of life while extending life span—without complete information about how much threat we’re really facing. I don’t want to diminish my quality of life too early, but I don’t want to wait so long that getting the treatment I need isn’t possible.
I recently finished a book by the late neurosurgeon Paul Kalanithi, When Breath Becomes Air. After working his entire life to become a neurosurgeon and ending up a chief resident at Stanford, he was hit with a diagnosis of stage IV lung cancer. His career path had been brimming with opportunity—to become a renowned neurosurgeon/neuroscientist, to do research that would change lives, and to continue operating on the very organ that makes people who they are. And then in a blink, everything shifted.
The life he had been leading was gone. The diagnosis left him facing his mortality at a much younger age than he ever thought he would have to. It forced him to consider the question of what makes life meaningful—which had long held his interest in an abstract sense—in a concrete, urgent, and highly personal way.
Lung cancer and cystic fibrosis are very different illnesses, of course, but throughout the book I found myself laughing, crying, highlighting, underlining, and saying yes, yes, yes, yes, yes. So much of it resonated.
With his diagnosis shining a spotlight on his mortality, he wondered how he should spend his time. “The way forward would seem obvious,” he wrote, “if only I knew how many months or years I had left. Tell me three months, I’d spend time with family. Tell me one year, I’d write a book. Give me ten years, I’d get back to treating diseases. The truth that you live one day at a time didn’t help: What was I supposed to do with that day?”
The question of how to meaningfully spend a life is not unique to those of us with health challenges. None of us knows if our life will be cut short. But for people with cystic fibrosis, or stage IV lung cancer, or any other life-limiting illness, there is a certainty that life will most likely be cut short to some extent. This certainty forces us to examine our values, prioritize our time, and search for meaning now rather than later. “I began to realize that coming in such close contact with my own mortality had changed both nothing and everything,” Kalanithi wrote. “Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely.”
Kalanithi hits the nail on the head of one of the more frustrating aspects of trying to make the most of whatever amount of time we may have. “The most obvious might be an impulse to frantic activity: to ‘live life to its fullest,’ to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day….Some days, I simply persist.” Some days, I simply persist; some days, I simply breathe.
* * *
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A few weeks ago, on a night when I wasn’t sure how to keep managing it all, I finished Paul Kalanithi’s book and cried. But it reminded me of the way to move forward, the way I’ve been operating my entire life: “Maybe, in the absence of any certainty, we should just assume that we’re going to live a long time. Maybe that’s the only way forward….Even if I’m dying, until I actually die, I am still living.”
7/11/16
They told me I was resistant to all of the antibiotics. They brought the infectious disease doctors on board and overall the outlook was very bleak. My oxygen was low so I was wearing the cannula, and I was having trouble walking. I started having chest pain. My GI was not good. My weight went down to 139. But then they switched me to Ceptaz/avibactam instead of just Ceptaz
, and put me on TOBI instead of colistin. A little while later they switched me to IV Bactrim instead of oral (at my urging), because the oral makes me more nauseous but probably works better. They also added oral minocycline. Day after day, nothing was really happening, I wasn’t really improving.
But then I started to turn around and got discharged the next Thursday, day 8. One thing during this hospitalization made me happy…Jack came to visit every day from Thursday to Monday. Then he got busy with school.
I’m scared the IVs aren’t going to work anymore. They keep me on them even though I’m resistant to each one. The theory is that synergistically they provide some help. I just want to make it to Hawaii on August 19 with my parents, Micah, Jack, Matt, and Michelle. Haven’t been to Maui in a year and I miss the sun and the warm ocean so so so much. It’s painful to think about how much I miss it.
Caleigh went to Hawaii for two weeks and had the time of her life and then the day I got admitted, her mom called me from there to ask the name of the hospital I was admitted to. Caleigh had a bad bowel blockage and needed surgery but they couldn’t do it there because she’s too complicated. She was in so much pain. She ended up on a ventilator because she couldn’t breathe, she got pneumonia, and they medevacked her to Stanford’s ICU and it was heartbreaking that there was nothing we could do to help. Melissa and Emily*1 were both checking in with me about both my health and Caleigh’s. I had more info about her since her mom was updating my mom and me.
I kept picturing her in the ICU, unconscious, unable to breathe without life support, going on ECMO,*2 her family watching her like that, her dad and sister flying in to be with them, unable to do anything. How could they manage, how could they hold it together? How would my family deal with that? What would I want if I were in her circumstances? Or, better put, what will I want when I am in her circumstances? Because one day it will happen, that is inevitable. The when is unclear, but the fact that one day it will happen seems inevitable.
Since my cepacia is resistant to antibiotics, the stakes are higher, and I’m starting to see myself in Caleigh. How ironic that the writing I’ve been doing for Nelson Hardiman about California’s death with dignity law will be relevant to my life one day soon, if I end up on a vent or suffering in some extreme way and am not able to get a lung transplant because of the cepacia.
7/19/16
The last two days have been madness. I’ve had a million things to do all at once—we’re in the final throes for Susan’s book, writing for Nelson Hardiman, writing for Janet,*3 editing an app for a friend, editing Dr. David Weill’s memoir about running a transplant program, writing a blog post for Emily’s Entourage.
The more time we spend together, the more I feel myself falling for Jack. In the beginning I wasn’t sure if we had a connection other than physical attraction, but I don’t feel that way anymore. I appreciate that he feels like he can talk to me about anything, and I think I’m getting to the point where I feel more comfortable talking to him about more important things.
I’m really excited about Hawaii, which is only a month away!
7/21/16
My GI issues have once again taken over my life. This is how it was in my senior year of college. I remember having a tormented relationship with food, constantly being hungry but also being afraid to eat; then eating anyway, never knowing how much to eat or what foods would be good or bad for my stomach. I had horrible body image and self-loathing issues for not having a body that functions properly.
Things with my GI are as bad now as they ever were. I need to get a handle on it and wish Dr. Mohabir would let me try ataluren again because I can’t fucking deal with it anymore.
Getting the infection under control feels beyond my control. They extended my IV regimen instead of taking me off IVs or admitting me. They put me back on the same regimen I’d been on three weeks before, the one that I got sick on. I need a punching bag….
I don’t really feel like I have an outlet for this and I have so much anger right now. I can’t talk to my parents about this or they’ll force me into therapy. As I get older, the more I realize how hard my disease must be for them and how much fear they must have, too, the more I don’t want to dump my anger on them. I want to be strong for them, or at least pretend to be strong. I can’t talk to my friends because they won’t understand. And not Jack for sure because I’m not comfortable even acknowledging that I have GI problems.
I remember asking Kari about how she discussed the topic with her then boyfriend (now husband), Brad. She said she had to tell him something, and just told him straight up what she struggles with. Apparently he said, “That’s what you were so scared to tell me?” And she said something like, “But don’t you find it disgusting?” And he basically said something like, “You’re beautiful to me no matter what.” He loved her unconditionally.
I just spent a solid twenty minutes reading old conversations between Kari and me on Facebook Messenger from 2014. Back then, I was still planning to live in New Zealand after graduation. And she was still alive. So much has changed. She was worrying about internships and job applications then. I was trying to figure out my postcollege plans and career goals. I admired that she was so dedicated to working despite her health status; who knew she would be dead a year later? We were both admitted at the same time for GI stuff, both dealing with dehumanizing enemas and communication issues with the team, both wondering about the best way to disclose CF in the workplace, to friends, to boyfriends. So many of the same issues I still think about now, except I’m still here to ponder them and she’s not.
My ability to talk to others with CF has waned a little bit. The main three that I always kept in touch with were Melissa, Kari, and Caleigh. But things are so different now with Melissa and Caleigh having had their transplants and Kari being gone. Melissa and Caleigh both could have died a number of times; fundamentally, they’ve been through things I cannot understand and have every reason to fear. They reached the end of the CF spectrum and jumped onto a completely different one—the transplant spectrum. Their lives are so different and their health status is incomprehensible to me now: I don’t know the intricacies of life post-transplant, and for them, the troubles of life as a CF patient with 40 to 50 percent lung function are in the distant past. I don’t think we relate in the same way anymore. I find myself not knowing what to say, thrust into the position that probably most of my friends and acquaintances are in when they hear about my health. When I try to talk to Melissa and Caleigh, I feel uncomfortable, wanting to say just the right thing but having no idea what that right thing is and fumbling with words. Melissa and Caleigh always listen when I have complaining to do, but I don’t feel right about it given what they’ve been through. They’ve been at death’s door, they’ve been on ventilators, they’ve had their families crying beside them, wondering if they’ll make it through the night. They’ve had their chests ripped open, their old lungs torn out and new ones placed in, like magic, except it’s not magic and there seem to be as many problems post-transplant as there were before.
7/23/16
The day after I wrote that last post I started to feel much better emotionally.
Last Friday, Jack came to the city to have dinner with my parents and Glen and Sandra, which was truly a hilarious event. He knows nothing about Judaism and it was a Shabbat dinner, so he got a full-on Jewish education, learning about the kiddush cup, the prayers, what a Seder is, the story of Passover, what a kippah is, etc. Sandra gave him a lot of shit and he was taking it well—apparently, she liked him a lot.
After we got home that night, we talked for a really long time about so many things. In this relationship, I’m scared I’m the one who’s going to get hurt, for two reasons: 1) I wonder if part of him still has feelings for his old girlfriend and 2) in December, he’s going to move wherever he needs to be for his career, and that might not be S.F. And even if it is S.F., if he ultimately plan
s to move to the East Coast, I’m going to have to think long and hard about whether to spend so much time in a relationship with someone who probably can’t be with me long-term.
For now, though, things are really good. We debriefed the dinner and laughed a lot. I like that he’s so willing to spend time with my parents and family. I think Jack values family a lot. I wonder if I will meet his mom at some point? She doesn’t seem to come up here often but I know they are very close. He’s going on a trip with her to Oregon in September and we’re still discussing the possibility of me going to Maine with him and his dad, which I keep going back and forth about.
*1 another friend with CF and the founder of Emily’s Entourage
*2 Similar to the heart-lung bypass machine used in open-heart surgery. It pumps and oxygenates a patient’s blood outside the body, allowing the heart and lungs to rest.
*3 the founder and curator of ArtHealingArtists
PART FIVE
It is not every day that you run into an individual that is far older and wiser than her stated age. Mallory leaves behind a message to be remembered. Facing the unconquerable with perseverance, determination, and realism is a victory even in the face of death. Mal gives all patients with cystic fibrosis the hope of survival and the possibility that you can Live Happy with chronic illness. Mallory has taught me that although I have suffered her loss, I have gained a story of love to be told. A love of her, a love of hope, and a love of life, which lead many of us on the path to find a cure.
Salt in My Soul Page 18