12/2/16
I feel like people with CF are privy to secrets it takes most other people a lifetime to understand. How lucky we are to be alive. How lucky anyone is who has their health. How we should be appreciative of anything that’s in our control since our health is not. That we can leave behind a legacy when we go that will impact others. That simple things are often the most beautiful. That love and happiness are the most important things to strive for. That ultimately, we shouldn’t give a damn what other people think, because everyone’s making their own way and everyone’s facing different struggles that others aren’t aware of. CF has given me my value system and ultimately, no matter how hard it is, I’m grateful for it.
12/3/16
New Year’s is important to me. Not New Year’s Eve; I’ve never liked that night as far as holidays go. But the new year and the weeks leading up to New Year’s always force me into a state of reflection that I generally don’t get to at any other time.
So as the new year approaches, I find myself reflecting. This year has been monumental. Colossal. As far as change goes, who I am and what my plans are for the future changed weekly this year, whereas in the past, they changed over the course of months or years. My resilience has been challenged and my ability to adapt has been called upon. “Mind over matter” has never been more important.
Questions that have been prominent: those of identity; what matters to me now and in the future; who matters to me now and in the future; how I can keep my mind stimulated while my body deteriorates; how I can accept the fact that my body is deteriorating; how I can be happy while feeling like absolute shit.
I don’t have the answers. It’s a struggle. There have been many low points. But I realize that as time goes on, what I define as a low point will keep changing. For example, at UCLA hospital in January, I was traumatized by having to use the toilet inside the fishbowl of the ICU room. I demanded to walk to the bathroom in the hallway each time I had to go, which was frequently, because I drink so much water. When I was too sick or unstable to walk to the bathroom, it felt like defeat. It was crushing, humiliating, and dehumanizing. Now, in my most recent hospitalization (again at UCLA—coming full circle this year despite lots of Stanford admissions in between), I requested a bedside commode because I literally couldn’t bring myself to walk the five extra steps to the bathroom in my room. I voluntarily embraced the bedside toilet, something that a year ago was unfathomable to me. I call this progress.
It’s sad that I have to come to terms with these things, but transplant is going to test me in ways I can’t even imagine now. Being on a ventilator in the ICU and having to have my butt wiped in the bed by some male nurse assistant is going to be my reality, either pre-transplant or post. There will be pain beyond what I can tolerate right now. I only hope my pain tolerance adapts and that I don’t wilt under the force of all the hardship.
Another thing to get used to is my diminishing brain power. I used to be smart. I didn’t know what it would be like to be less smart—but now I do. I don’t remember things. I don’t draw connections in the way that I used to. I don’t understand complex concepts. I can’t focus on books, and thus I’ve lost an entire world I used to have as an escape. Not one world—many worlds. Being smart was a part of my identity that I took for granted because I didn’t think that would change. I heard a quote recently about books that was something like, “Though I remember nothing of the plots of the books I’ve read, nonetheless, they’ve made me.” And that is so true. Books have taught me compassion. They’ve taught me to see beyond the bubble I was raised in. They’ve shown me other experiences, other lives, other worlds. They’ve awakened in me a spirit of adventure, which now lies dormant. They’re like friends that I’ve pushed away, but now I miss them.
12/8/16
Today was my first day of pulmonary rehab at UCLA. It inspired me to take more action to control what I can with my health. And where that starts is with exercise (and nutrition, but I’m already working on that).
I feel like my body is a foreign object, one I don’t understand. The CF rules I’ve learned my whole life and biology I learned in school do not apply, because something more complicated is going on.
I’m giving myself a goal and that’s to be able to walk on the beach on hard sand for twenty minutes by the time Jack comes and we go to Malibu. I just have to have something concrete to work toward or I will languish.
In some ways, I struggle so much more than any twenty-four-year-old deserves to. But in some ways, I’m privileged beyond belief. I wish those two things canceled out to make me feel somewhat normal. Instead, I just feel the deepest lows of CF misery, and the incredibly fortunate highs of having the family and friends and resources to live as well as possible despite that. Having the most incredible house in Malibu offered to us by Walter and Hildy for Christmas vacation? Unreal. It’s unbelievable. Having Jan buy me a really great coat for the Pittsburgh winter, even though we’re probably not even going this winter anymore? Also unreal. I just have to do my best to keep those feelings of gratitude at the forefront. And that’s easy when I’m feeling well; it comes naturally to my healthy self. But it’s like I have a split personality. When I feel sick, everything feels terrible, and my future feels so bleak, and I can’t stand the idea of being around anyone, and I can’t stand the idea of being alone—it’s a catch-22 that leaves me stuck in a trap of unhappiness, which I recognize from the outside as being absurd, but it’s like a nightmare I can’t wake up from. While I’m in it, I don’t have the ability to change the channel away from self-pity so I can only do my best while I am healthy(ish) to bolster my sick self through the sick times by coming up with strategies to remind myself of how lucky I am, even when I feel like absolute shit. When I feel good the world is filled with endless possibilities.
I’m so conflicted about whether to stay in L.A. or go back to S.F. in January. There are pros and cons to each.
LOS ANGELES:
Pros: time with family and Maria and Kona, being well-fed all the time, warm weather, less pressure to be social and more time to rest, amazing adjustable bed where I can raise the head, which helps me sleep. L.A. is comfortable. All my stuff is here so it’s the path that inertia leads me to. I can go to the beach and put my feet in the water. I can be treated at UCLA, with all the personal attention and nurturing qualities of Dr. Eshaghian.
Cons: don’t want to lose touch with my S.F. friends; wouldn’t get to see Jack very much; don’t know how much longer I get to live in California so maybe I should be acting like a twentysomething-year-old by being in my own apartment, surrounded by friends.
If I go back to S.F., am I going to have enough help? Am I going to be lonely being in my apartment by myself, or, on the opposite end of the spectrum, will I feel smothered by hanging out with my mom? Is it just going to remind me of all the things I can’t do, now that I’m wearing O2 24/7 and don’t feel super comfortable or stoked about going out at night?
SAN FRANCISCO:
Pros: get to see Jack and friends all the time. The light filtering in through my window, through which I see the ocean and the Golden Gate Bridge. My desk, organization, the feeling of productivity I have there. The gym. My old routines. Feeling like I’m living out my S.F. life for as long as I possibly can.
Cons: thirty-two stairs to get up to my apartment, and hills to walk anytime I want to go anywhere. Less help. No one to cook for me. Cold weather. I have to be treated at Stanford, where it’s difficult to get what you need unless you’re an inpatient. Pressure to get feeding tube from Stanford team. Possibility of Jack leaving soon after I move back, if he gets a job on the East Coast.
So conflicted.
The main thing I worry about up there is loneliness. But it’s funny because the main thing I worry about in L.A. is also loneliness. CF is just an isolating disease but I don’t do anything to try to combat that; I just get tired and
watch TV alone. I think I would benefit from therapy but I don’t go. Except that there’s no one else to talk about my issues with—other CF patients deal with their own issues and it’s really hard to complain to people who are worse off, and those who are better off don’t understand; healthy friends don’t understand and often don’t say the right thing. They say things like, “I’m sure it will be fine,” “I’m sure you’ll get better,” “Stay positive,” all platitudes that don’t really help. With Jack, for some reason it just doesn’t feel natural talking about my problems; I minimize things. It kills my mom to see me sad so I don’t want to burden her with that when she and my dad are going through their own struggles as my caretakers.
I’m starting to think therapy is the only option because in my own head I just go in circles, and with others, it’s not working well. And I need to be so mentally strong before transplant. I need to be at peace with the idea of death while also fiercely wanting to live; it’s hard to feel both at the same time.
Anyway, back to pulmonary rehab. They want me to walk six minutes, three times a day. I think if I do that I can build up to walking twenty minutes on the beach. That plus the resistance/weight stuff I’m doing with my trainer should help me and maybe put on a couple pounds of muscle—then I can get the dietitians off my back.
12/22/16
Wednesday morning, I woke up to tragic news—a blog post by Caitlin’s mom (the girl I met when I was in Pittsburgh for my evaluation). They had been there for two and a half years waiting for transplant. She worked so hard and did everything right. But then her health crashed, and she ended up on life support (ECMO and ventilator). She was having all sorts of problems and I was following the updates from her mom on the blog. Because I’ve been working on David’s memoir, I have more insight into transplant than I otherwise would. And as I saw how sick she was getting, I kept wondering if Stanford would have already removed her from the transplant list for being too sick. But UPMC didn’t, and after a couple of dry runs with lungs that weren’t viable, she finally got lungs, perfect lungs.
But she was still in critical condition. They couldn’t close her chest because of swelling, and even though Maryanne made it seem on the blog like that was normal, I knew that if they cannot close the chest, the likelihood of the patient making it is slim. She was having more problems though, her blood pressure was too low, she had rising lactate levels, which signified dead tissue somewhere, and they didn’t know if it was in her leg or her liver or her bowel. And her liver started to fail, and maybe her kidneys, too.
The next day I read that she had died. It was devastating. I immediately started bawling and could not control myself. I let myself cry for ten or fifteen minutes, thinking about her family, thinking about how hard she fought, and how futile it all turned out to be. All that struggle, all that uprooting, and now she’s just dead. Gone forever. It felt like my heart was being squeezed by a vise grip.
12/28/16
I find myself thinking about Caitlin, her family, and how tragic her ending was. It reminds me to be grateful for the health I do have.
12/31/16
My anniversary card to Jack:
Jack,
I can’t believe a year has come and gone already. When I met you on NYE 2015/2016, I never could’ve guessed that you would become one of the most important people in my life, in one of the most important times of my life. I’m so lucky to be with you—you’re caring, smart, funny, so fun to be around, so handsome, and so, so, so good to me. Ever since the day you charmed my grandparents—two weeks into our relationship—I knew you were a keeper! Time and again, though, you’ve surprised me with your willingness to jump into this crazy life of mine. It amazes me, but it also doesn’t, because you’re amazing. I know this distance thing we’re doing is hard, and we don’t know what will happen in the future. But whatever does happen, I want to thank you deeply for an incredible year with you and for the best relationship I’ve ever had. Paradise really is anywhere I’m with you (although I do hope for more times in true paradisiacal places in the future) :) Love you so much.
Mal
2017
1/24/17
In the hospital at UCLA Santa Monica. Been struggling with the usual symptoms.
We are likely going to Pittsburgh in two weeks. Mom started crying today when she talked to Dr. Eshaghian about the fact that then she has to leave me to go to S.F. to pack up my apartment, and then we’re going to Pitt soon after that. It made me so sad to see her cry. She always puts up such a tough and strong front, but I know that there’s so much sadness and fear underneath that she rarely lets anyone see.
1/26/17
Today is a better day. My lungs are clearing out and I didn’t wake up at 6:00 to bring up floods of mucus. I’m no longer using morphine for shortness of breath or lung pain. And I’m not having fevers, which is the other biggest thing!! The fevers would prevent me from being listed because it would show that we don’t have the infection under control. Pitt wants them under control.
Sounds like we’re going to Pitt in five days to a week. Wouldn’t be surprised if it was end of next week, which would be ironic because I think a few people are coming to town to see me that weekend. Don’t remember, though, because my memory is shit.
2/10/17
The past week was hellish. I kept spontaneously bursting into tears. Talia had a going-away party for me on Wednesday night so I could say my goodbyes at one time instead of trying to see everyone separately. There was so much back-and-forth about me going/not going/going/not going so in the end, I only had two days at home between when I got out of the hospital and when I had to be across the country for UPMC’s clinic. It was stressful trying to pack up my entire life to move across the country while 1) battling end-stage lung disease with fevers and an acute infection, 2) spending my last two days with Jack before being long-distance, 3) saying goodbye to my grandparents, who will be dead most likely when I’m back, 4) saying goodbye to my dog, which feels like abandoning my own child, and 5) saying goodbye to Maria.
Yesterday, I took the biggest leap of my life into the scariest chapter of my life. UPMC has given me reason to hope. Dr. Pilewski is my hero for being willing to gamble on high-risk cases like mine—and for giving me a second chance at life.
I left California so I don’t become a life-expectancy statistic or a sad case study written about in a medical paper. I left to chase the dream of a better and longer future. A four-hour flight across the country was the beginning of the journey. My mom, dad, Linda, and Dr. Monvasi, a doctor from Tampa that David recommended, flew with me. It was the last nonstop American flight from L.A. to Pittsburgh before they discontinued the route. It was so nice to have help moving.
I still can’t believe we’re in Pittsburgh for good (temporarily for good, oxymoronic as that may be).
2/13/17
JUST GOT THE CALL THAT I’M LISTED!!! I was in bed at our hotel taking a nap, then woke up and was on the phone with Sabrina. Got a call from a 412 number and should have answered but ignored it because I hadn’t talked to Sab in so long and didn’t want to cut her off. Then two mins later my mom comes busting in with the biggest smile on her face, on the phone, and tells me that it was UPMC and that I was listed!!
We thought the call might come tomorrow but I didn’t want to get my hopes up. And then it came early! Such a relief. But it also means we’re now on call 24/7 so I can never turn my phone off again and I should have a hospital bag packed so that I’m always ready.
It’s surreal.
Stanford had said that no one would give me a transplant but now UPMC is doing something miraculous. I don’t think it ever really sank in that I WOULDN’T get a transplant, but there was enough doubt to know that this is a huge moment. Huge huge huge moment!
Right after I got the call, Jack texted me to pick up his FaceTime and I
did and then my mom brought in a bouquet of a dozen roses. They were from Jack for Valentine’s Day!
2/18/17
The past few days have been okay. We rode the high of me getting listed for a couple of days, which was great, before settling back into our new normal. It could take months or a year or more to get the call, so we have to straddle the line to be ready at any moment but also prepared for a long wait. It’s a bit of a mind fuck.
The thing that scares me is my persistent fevers. If I got the call today, what would I say? Whenever I don’t take Tylenol or Advil on the dot of six hours, I start getting chills and a fever. I don’t know how high it would go, because I’m continually suppressing. I can’t go into surgery with active infection. But I ALWAYS have active infection, which is why I need to be on IVs.
Caitlin’s mom and dad are in Pittsburgh to pack up for their move back to Boston. They did what we did—moved here to get listed since their own hospital in Boston wouldn’t transplant Caitlin because of cepacia. They invited us to a party given by their neighbors. It was a chance to say goodbye to all the people they’d gotten to know in the two and a half years they were here.
I was going to go but wasn’t feeling well so my mom went without me. After the Advil and Tylenol kicked in, I finished treatment and was hungry so wanted to get dinner. We were still in a hotel so I texted my mom to find out if she had eaten. She asked if I wanted to come to the party and so I went. Everyone was so nice, especially the hosts, Ralph and Mary. My dad had already gone back to L.A. so my mom was ecstatic to make friends in a city where she knew no one. And everyone was so welcoming and sweet.
Salt in My Soul Page 23