Bacteriophages (phages) are naturally occurring viruses that have evolved to attack bacteria. Unlike chemical antibiotics, they are target-specific: each variety of phage attacks only one species of bacteria, sometimes only one particular strain. The idea behind phage therapy is to find several phages active against a particular strain of bacteria, grow them in a culture of those bacteria, purify them, and then administer them to a patient to eradicate the bacterial infection.
Diane and I had directed funds from our annual fundraiser to Dr. LiPuma’s lab for many years, so I reached out to him by email. Dr. LiPuma had not continued the line of investigation outlined in his article. He referred me to Jonathan Dennis, Ph.D., of the University of Alberta, who was apparently continuing to investigate phage therapy.
According to Dr. Dennis, phages, or combinations of phages, exist that can kill any particular strain of bacteria. His lab had used phages to eradicate B. cepacia infection from the lungs of cystic fibrosis knockout mice. But he had not been able to try it on humans. He had worked with clinicians from around the world, including Australia, Germany, and the United States. Phage therapy looked feasible several times, but each time, even with end-of-life candidate trials, liability issues did not allow the application to proceed.
Dr. Dennis wrote, “Everyone is waiting for clinical trials to be conducted that, if successful, will permit the FDA to approve phage therapy, at least in some cases….Based upon the science, phage therapy should be effective. Legally, I do not know how to go about this.”
Funding for phage therapy was just not available. Pharmaceutical companies were not interested, apparently because the end product would not be a patentable chemical.
I suggested to Diane and Mallory that we fund Dr. Dennis’s research into phage therapy. They declined, thinking it was a long shot that would not be clinically available in time to help Mallory.
I discontinued my research into phage therapy.
8/5/16
Feeling a little emotionally numb. It’s now Friday so I’ve been here in Stanford Hospital for a week and four days. I’m supposed to be getting out on Monday.
Today I got calls from Cleveland Clinic and University of Pittsburgh Medical Center (UPMC), from their transplant programs, to verify some information. It was shitty false hope from Cleveland because the medical director of their transplant program had already told my mom by email that they have a blanket policy against transplanting cenocepacia patients, and they already told Chhatwani that they wouldn’t consider me. But UPMC!!!!! I’m still hopeful.
But what do you call it when the best-case scenario, the thing you’re hoping for, is almost as terrifying as death itself? This week, time and again, I’ve thought about the fact that the road will only get harder from here. And I don’t know if I should try to forget that, to distract myself from that, or if I should really reflect on it so that I can be grateful for the health that I do have now. Because on the one hand, understanding how hard things will be in the future does make me realize how lucky I still am. But on the other hand, I am scared shitless about what the future will bring, for how much I will suffer, and for how much my family will suffer.
The thing I keep thinking about, the image I keep coming back to, is a reservoir. My family’s love for me and their ability to help me is this reservoir that seems endlessly deep. It always seems like it will never run out. But as things get harder and as I deplete their resources (their love, their time, their money, their concern), I know we will get to a point where we have to worry about running out. I don’t know if we will run out of money—my parents are literally buying the apartment beneath mine in a city that I don’t even know how much longer I’ll live in just to be there for me—or if I will just suck them dry, until the only thing they’re living for is me and they have nothing left. I already feel like I’ve taken so much away from them and now my mom has to uproot herself to move up here and live with me.
That’s one issue.
Another issue is that I don’t know what to do about my vacation—whether to go to Hawaii or not. Whether to plan a different trip.
I feel awful that I’ve burdened Jack with so much worry about me when he’s in his second-to-last quarter at Stanford and he’s worked his entire life to get here and now he’s tanking his GPA. I just can’t imagine the stress that he’s feeling. But I also can’t be worried too much about his stress because I have to worry about my own stress and, fundamentally, the one who’s going through this is me. I am not minimizing what he’s going through. He has to be absolutely torn about how to handle this.
He says he’s on the verge of tears all the time and yet he has to go to office hours, attend class, work in his lab, etc. He has to put on a brave face in front of my friends and family and his own friends. I guess he’s just picturing the worst possible scenarios in his mind and that’s what’s so hard for him—he says he’s freaking out all the time. He’s worried he’ll just be walking to class and get a call that something catastrophic has happened to me. It’s beautiful that he cares enough to be so distraught over what’s going on with me.
But when he disappeared for a few days it was hard for me to not know if he was coming, or if I was going to hear from him. If he was having doubts, I would rather have known. I would understand. Completely. He only has one quarter left at Stanford after this, and if he wants to focus on school and friends, I would understand. Especially since he’s likely going to move away anyway. I don’t think he wants out because he hasn’t said anything like that. I am trying to give him space but then I wonder, why? And where do we stand as a couple?
I really care about him a lot. I almost said “I love you” the other night, but then I didn’t, because I didn’t want to complicate things even further. Now I’m especially happy that I didn’t say that, given that he’s been having an awful time adjusting to what’s going on with me, and that I don’t know if he wants to stay together.
That brings me back to vacation. Perhaps I should make a decision about Hawaii independent of his scheduling constraints. If I do end up being able to go to Hawaii but not at a time that works for him, it will still be nice; what I want is to surf, to be in the water, etc. If I can’t go with Jack, so be it. It would’ve been fun, especially if Michelle and Matt could go as planned. But after talking to Caleigh, who doesn’t think it’s a good idea for me to go, I’m second-guessing the idea of going in two weeks. It might be fine to just go to Malibu, go for some nice drives, stay in a nice house, and do some hikes.
I feel like I’ve given up in the fight a bit….I feel so unmotivated to get back to my life, to get back to work. I feel a lack of optimism that I will ever be able to do the things I love. If I can’t be the person I was, I don’t know who to become. I don’t know how to prioritize my health without being just a sick person. I don’t know how to explain this situation to my friends, how to talk about my prognosis, how to conceive of how much time I have left, and how to prioritize what I do with that time.
8/8/16
Got discharged from the hospital today. But I don’t feel as happy as I think I should. I vaguely remember, in my recent hospitalizations, feeling really excited to get back to S.F. and my apartment. But now I don’t feel excited.
It scares me how dependent I am on so many medications. I feel extremely dysphoric, just generally dissatisfied with life. And I can see logically from the outside that I have no reason to feel that way. Well, I do have some reason. I did just get news that my prognosis is horrible, and every few days I get more rejections from transplant centers. So yes, I have reasons to feel sad. But usually I can compartmentalize and still find happiness in the present moment. Today I just felt like I would never be happy again. Except when I was with Jack—I felt happy when he came over. So even if our relationship ends after this fall, I think it’s worth it to be with him until then because he brings me happiness.
Later that day, Julia and
Liane came over and we hung out with Tamara, who was still visiting. It was so great to have friends over! We went back out to a table by the fountain in front of the hospital. Caleigh and her mom, Lizeth, came outside at the same time, so we all chatted. It broke my heart to see Caleigh. She weighs sixty-seven pounds now and she can’t eat a thing because she’s nauseous and vomiting. It’s just heartbreaking how much she suffers. She’s so skinny, she’s super fragile, but that girl just doesn’t break. I wonder often how she keeps her spirits up. I think it might be her family. They seem to bring her a lot of joy.
She told me that when she was waiting for transplant but thought she might not survive long enough to get one, she started marking off bucket list items. That made me want to create a bucket list. I’ve been living so safely that I feel like I don’t even have an adventurous spirit anymore. Caleigh found a hot air balloon company that let her bring oxygen up in the air, somewhere near Napa. That blew my mind. I’m so much healthier now than she was when she did that, and she had more spirit than I do. It was like a kick in the ass to do things.
But at the same time, I feel like I want to protect myself, because if I can’t get a transplant, then I have to keep myself stable or I’ll die. Everything feels very hopeless right now and I’m trying to find a way to convince my brain to feel hope. But I can’t when that doesn’t seem logical.
8/10/16
August is a big birthday month in the Smith family. My mom’s birthday is today, my dad’s sixtieth is Friday, and Micah’s twenty-sixth is in twelve days.
I am limited in what I can do, but not in what I can say. The biggest challenge I’ve faced in the past year has not been keeping myself healthy—it has been trying to adequately express my gratitude to my family for the insane, over-the-top, unbelievable sacrifices they’ve made to further my well-being. For nearly twenty-four years, their needs have been secondary to my own.
To say they are the best parents I could ever ask for sounds trite. To say I am grateful is an understatement. A Facebook post can’t do them justice. It feels absurd to try to thank them with words—I wish I could plan a six-month vacation for them, to thank them for bending over backward every single day to keep me alive.
It’s the beginning of a new chapter for all of us. I am grateful to my mom, to my dad, and to Micah, for never making me feel guilty about all that they’ve had to give up. They are amazing.
8/24/16
I look around and see blue. Royal blue water, turquoise farther in the distance. Blue cloudless sky. Even the boat is blue.
My back bakes in the sun and my right foot sizzles. My right arm wraps tightly around Jack—after a year away from the ocean, getting tossed off a fast-moving boat in water hundreds of feet deep would be traumatic.
My breath quickens as the wind and swell pick up. I remind myself to breathe deeply and slowly, knowing that anxiety-induced breathlessness is the one kind I can control. As I maintain my death grip on the rope and focus on my long inhale-exhales, it hits me all at once—I’m in Hawaii. In the middle of the ocean. My favorite place, and my other favorite place. I’m not in a hospital. I’m with Jack, Michelle, Matt, Ari, and Justin. Even Micah is here! It’s sunny, it’s beautiful. I can breathe. I’m not wearing oxygen. No one on the boat that didn’t know me would think there was anything wrong with me, other than a cough. I’m happy, happier than I can remember being in a long time.
We continue on toward Molokini and I smile and smile. I wonder again if this is the last time I’ll ever come to Hawaii, and then I banish that thought and look down at the water, noticing the way the boat cuts through it so forcefully yet so elegantly. It’s a beautiful Wednesday.
I keep wondering: Can this be real life? I think, maybe my life can be like this again. Maybe I can walk on the beach and do long open-water swims and start surfing again. Maybe I can help with the dishes and not freak out over a bad night of sleep. Already, in just six days, showering normally has stopped feeling remarkable; maybe, just maybe, I’ll stay off IVs long enough that submerging underwater will stop feeling like a long-lost vestige from my past.
I’m just so happy to be here. Even though I can’t dive as deep as I could when I was a kid. Even though I can’t surf at all, when just a year ago I was charging. I lugged my oxygen concentrator to the beach (or rather, Jack lugged it). Things are different now, we know that. But in some ways, everything is the same—the same peace descends each time I jump in the water, the same euphoria when a sea turtle or a reef shark swims below me. The same simple pleasure comes from eating big dinners with family and friends, from sitting on our patio with wine and cheese.
8/25/16
I sit on the lanai of our condo in ninety-degree weather in a long-sleeve shirt, sweatshirt, yoga pants, and a second layer of sweatpants on top. My body won’t stop shivering, so I’m searching for the warmest place I can find. Jack comes out onto the patio to get the grill ready to cook leg of lamb. I know I’ll have to leave the patio when the grill gets smoky, and I wonder where I can go to avoid freezing. The bedroom is out of the question—the fan and A/C keep it a frigid sixty-eight degrees. My parents’ bedroom is even colder.
Finally, I drag myself up off the outdoor sofa, the bag with my oxygen concentrator draped over me cross-body style, pulling my shoulders forward. Into the bathroom I go, where I pull out the blow-dryer and start blow-drying my already-dry hair, face, neck, chest, back, legs. Anxiety begins to set in; it’s completely illogical to feel hypothermic in ninety-degree heat. But when does my body ever act in a way that’s logical? It’s illogical to get sick while on three oral antibiotics, two inhaled antibiotics, and thirty-five other medications. Since my life never feels logical, blow-drying my entire body in a bathroom in Hawaii doesn’t even feel that crazy.
But a case of severe chills, for me, is ominous. When I eventually take my temperature, I have a fever of 103.3. My stomach drops.
* * *
—
It’s a couple of hours after my fever spiked above 103, and I’m in the emergency room at Maui Memorial Medical Center. Before the trip, we’d looked up the hospital on the island to find out if it had an ICU, an interventional radiology team, and experienced pulmonologists. I didn’t think I would end up needing their services; mostly, the research was meant to convince my Stanford medical team that I’d done my homework and had fully thought through my decision to take the trip.
The IV alarm blares like a siren, a foot away from my head. After five minutes of sleep, the IV antibiotic has finished, and the pump won’t let me forget it. I press the call button for the nurse to come shut off the alarm so I can catch a few minutes of sleep before going to my next test. No one comes, so I fiddle with some buttons on the pump, familiar enough with how they work by now to silence it temporarily.
* * *
—
After a long night in the emergency room, I get admitted to the step-down ICU at Maui Memorial. Dr. Mohabir calls to check in on me at 4:00 a.m. Hawaii time, but I’m finally asleep, so he leaves a voicemail.
Dr. M tells my mom that he wants me out of the hospital in twenty-four hours. He wants me to enjoy the rest of my vacation, just with home IV antibiotics. That means no time in the water, but I’m learning that there’s more to life than plan A. The particulars of plan B—R&R, good meals, reclining in the shade with a good book—sound pretty damn good right about now. Better than staying in a hospital bed for another few weeks, getting weaker, waiting for the drugs to suppress this infection.
I’ve quoted this saying from a fellow CF-er before, but it just hits so close to home: Reality always finds us. Being in the hospital and on IVs is my reality, as much as I would love to play hide-and-seek, staying healthy and hidden on an island forever.
Before reality found me, I got to do things that bring me unadulterated joy for six straight days. The infection caught up to me, but I have two words for it: game on!
When I got out of the hospital we went back to the condo. Things were okay for a few days but I started to deteriorate on Saturday and got even worse on Sunday.
That night we were trying to decide what to do. We were supposed to stay until Thursday but there was news that a hurricane was coming. I started to panic about getting stuck on the island. Jack was great. He listened to me sob. It was the anniversary of Kari’s death and that also rattled me. It was all crashing down on me. The future felt too hard. Jack didn’t know what to say, how could he? But he listened, and he was present. And he made me feel safe. He had to get back to school and I didn’t want to stay on without him.
My mom jumped through lots of hoops to change all of our tickets to get us off the island (clearly others had the same idea to cut their trip short). She was ultimately able to make the arrangements and we flew the next day.
The crazy thing was that as we were rushing to pack and get to the airport, UPMC called to say I was approved for the evaluation. I was in the middle of treatment, everyone else was scrambling to pack up, so I handed the phone to my mom, who tried to stay calm as she attempted to capture important details about the weeklong process. She was clearly struggling to stay focused as she was processing her overwhelming joy. None of us could believe this was really happening.
The call took a long time. We were late getting to the airport and carrying so much medical gear. The hurricane was imminent, and that, combined with my high fever, made for an intense travel day. I was so relieved when we touched down, even though Hawaii had been absolutely incredible.
For a few days, being in Maui and seeing all that I could do made that prognosis I had received from Stanford seem ridiculous. How I felt the first few days of the trip gave me hope that I could reclaim my old life again, my old identity. That hope felt good. Even now that I’m back in Stanford Hospital, battling the same old infection, running through the same old tiresome drill, I feel a little more hopeful.
Salt in My Soul Page 20