This process is crazy. And exciting. After a weekend of sleeplessness, I have nothing profound to say about it. My sentiments can be summed up by: holy shit. Here’s hoping the third time’s the charm.
5/3/17
I feel good about things. I’ve had a good feeling the past few days. Maybe because things are so good with Jack. I have the strength and stamina to walk around with my O2 backpack, which makes me SO much more mobile and independent and makes me feel like my recovery would be quicker if I got the transplant in this current condition. I like that I have a steady stream of friends visiting, with at least a day break in between. I feel so loved.
I’m really sad about my grandparents, though. They are not doing well. My mom’s voice sounds so grave on the phone (she’s back in L.A. cuz it’s the end with her mom) and she’s eager to hang up, which is not her normal. I miss Grandma already and she’s not even dead yet—but this is what I knew would happen. I knew I wouldn’t really be able to keep in touch with them from afar because Grandma would get so sick. Now Grandpa is in a ton of pain from a fall, but his needs are kind of secondary to hers so I think his pain is not really being addressed. It’s all terrible.
5/5/17
Grandma died today. I don’t really have words; I’ve been feeling run-down all week but all the symptoms really hit me hard today, and that, combined with the complicated emotional experience of grief, has left me completely drained. I can barely muster the energy to talk out loud.
I don’t really know how to grieve her and honor her memory when I couldn’t be there with her at the end. I don’t know if there will be a funeral but regardless, I can’t go. It just feels unnatural, like tomorrow will come around and I’ll forget about it until something reminds me of her and I will have to remember that she’s gone.
My mom flew back to be with me last night, Aunt Meryl was with Grandma and called to say it was the end, so my mom spoke to Grandma on speaker. It was sweet to listen to; they talked about memories of her, said they loved her and would miss her but that everyone would be okay. My mom was on the couch having this conversation, and I was at the kitchen table, bawling my eyes out.
After Grandma died, my mom jumped into action. But she was crying, so I hugged her. I feel powerless to help and guilty that my mom flew back here last night and missed the actual end. My mom said Grandma wanted her to be with me so I guess I understand.
We spent a long time going through photos of Grandma and family to find ones for my mom to post on Facebook. I helped a lot with that.
5/13/17
On Monday I had a call with a Penn med student who is writing a story for Slate, about gender and wait times for organ transplants. Apparently, women wait longer. I hope to continue advocating for the issues surrounding transplantation.
Jack left for Europe on Thursday with his mom. His Wi-Fi on the riverboat is shitty so between that and the time change I don’t expect we’ll talk much over the next couple of weeks. It’ll feel weird to not catch up at the end of each day. I’ve gotten used to that.
I got a Fitbit gift in the mail yesterday! It was a great surprise from Emily. She is SO thoughtful.
5/21/17
Things have been pretty good lately, all things considered. Stable!! Went to see Dr. Pilewski in clinic last week and didn’t have much to talk about, which is a first! I LOVE him and the three women he works with.
Jeremiah and Marla got married this weekend in Cleveland, and I went! Micah and Dad flew in from L.A. so the four of us could drive to Cleveland together. First family trip without friends or boyfriends or girlfriends in literally YEARS—maybe even a decade? It was nice to spend the alone time with Micah. I feel like we never really got quality time together when I came to L.A. from NorCal because we were always in big groups or with people we were dating or at large dinners. So it was nice to have sibling time and actually catch up on each other’s lives.
The wedding was so nice, the bride’s family is one of the nicest families I think I’ve ever met. The whole weekend was amazing but EXHAUSTING. My dad and Micah flew back to L.A. so it was just my mom and me once we got home.
My mom was unpacking for hours. Crazy how much stuff I have to travel with. I couldn’t sleep so I decided to get up and try the ukulele Micah brought from L.A. It had been a gift I got him three years ago but he said he’d be happy to lend it to me. I did a deep Internet search about ukulele basics, chords, simple songs to play, and listened to some Bruddah Iz songs a couple of times through. The first was “Take Me Home, Country Road” and the second was “Somewhere Over the Rainbow,” although I really struggled with that one. My mom always sings, “Somewhere over the rainbow, there are lungs.” She says it keeps her optimistic.
5/25/17
I’m in the hospital. I coughed up lots of blood on Tuesday, the day after coming home from the wedding. At 4:00 p.m. I had a big bleed that led me to call an ambulance, but the small bleeds had started at 2:00 a.m. I’m thankful that the bleeding didn’t continue and that they didn’t have to embolize. Knock on wood.
Today has been hard. Things started out badly when my mom heard from the transplant coordinator that Dr. Hayanga, the surgeon we met with during the eval, is leaving to start up a new transplant center in West Virginia. The volume of transplants will go down, but I didn’t realize how much this news affected her until she recounted the information on the phone to my dad and started crying. She seems like she’s losing it a bit, between hearing this news, the hospital staff giving her shit yesterday for blocking the door while I took a nap (then ratting her out to Dr. Pilewski), and the pharmacy staff messing up my meds. Normally, she handles so much without cracking that I don’t know what pushed her over the edge this time. It could’ve been the hemoptysis (bigger than usual), or maybe it’s the aftermath of grief from her mom dying, or maybe it’s sleeplessness. All I know is she seems down.
I get it. Transplant scares the shit out of me, so for the first time in my life I’m choosing to be ignorant rather than research what’s to come so I can prepare myself. I don’t want to know about the vent, don’t want to know about ECMO, don’t want to know about chest tubes. I know I’ll somehow put my head down and get through it, and on the other side I’ll be grateful that I did and be stoked to be living life again.
My IV just beeped and I looked up to see that it’s dripping out of the wrong bag! Two hours after being started and the medicine hasn’t even begun—it’s supposed to be finished!!! Now the morning IVs are going to be too early. UGH. But if I change the schedule, everything is going to be whacked, and I’m supposed to be going home tomorrow.
I wish I had Micah’s ukulele here. I really felt happy when I was playing it. I felt calm, unaware of the passage of time. It was the middle of the night, no one was calling or texting, it was just me and the chords to some songs, my fingers practicing in order to get some muscle memory. I guess it’s the closest thing I can get to a sport now. The movements of my fingers are just like the skills in volleyball or a swim stroke, and you have to do it so, so much before you become good at it. But there’s pleasure in the effort of doing it, even before excellence.
6/3/17
I’m really pleasantly surprised by how nice my life is here. It’ll sort of hit me by surprise, maybe when I’m hanging out with people from Bakery Living, or if it’s a nice day in Pittsburgh and I have energy and we do something fun. But then sometimes it’s a nice day and we do something fun and I still feel this malaise.
I just feel like life is passing me by. And I know it’s not fair to complain about that because things could be SO much worse—I could be living in a hospital, instead of at Bakery Living and occasionally hospitalized. I could have no friends here and nobody visiting and no Jack. So I’m feeling grateful for all those things. And I am partly in control of what I do with my days, and I could spend them doing more productive things and w
hatnot. But I just can’t shake these bad feelings.
Sometimes it feels like there’s a hand inside my chest, taking my heart and squeezing it tightly so that it becomes hard to breathe for reasons completely unrelated to my lungs. And my heart will start to race and I’ll feel this sense of panic. And I know this anxiety is new, and it’s a growing problem. I’m just not sure what to do about it. I don’t want to keep taking Ativan because, first of all, if I’m dependent on Ativan, that doesn’t look good to the transplant team. And second, I think if I use Ativan a lot, then when I don’t use it, I’m more irritable (I think that’s a thing?). So I’m trying to relax and let it pass. Sometimes I cry, sometimes I watch TV, sometimes I write in this journal. But I feel like that solidifies this narrative—that I’m anxious and struggling and miserable. When really, that’s NOT true most of the time these days; it’s just that the times when it is true have a disproportionate impact on my perception of my life experience. And that’s when I feel like writing.
6/13/17
Thursday night Jack came to town! I heard him come in at 1:30 a.m. and I hadn’t been to sleep because I was lying there, tossing and turning. So I went into the kitchen to have a snack and say hi, and I scared him so badly, he jumped about five feet in the air! It was hilarious. We had a really good visit. It felt like things were back to normal with us after our heavy conversation. I think it was the fact that I’d finally unloaded the things that I was feeling upset about, and we talked through it, and then he got my anniversary card, which was really sweet, and he was very grateful about that and he really realized he needed to step up. And I know part of it was just that I was in a vicious cycle of anxiety where resentment was building and I was too scared to bring it up, and that made me more anxious, which meant I was even more sensitive to things he would do/say and make me more resentful and doubtful about our relationship.
So when he was here it just felt like we could have fun again and add good memories to the bank. Friday afternoon we got massages together, then we went to the patio to lie in the sun. I realized I really do love him and hope we have a future—and that a lot of my doubts are because I’m so unhappy with my situation.
6/25/17
It took me a second just now to think what month it is. Time FLIES.
I’m reading a few books now. Trying to feel more accomplished, and also to keep my brain stimulated. I’m reading Watership Down by Richard Adams, Guns, Germs, and Steel by Jared Diamond, and All These Wonders by Catherine Burns. It feels good to read, but I only do it at night. It’s this weird thing where during the day I say to myself, “Pick up the book, pick up the book,” and I know I’ll be happy if I do, but there’s this rebellious part of me that is like, “Fuck it, watch Netflix instead.”
At the moment, I’m reading Guns, Germs, and Steel and it’s 3:30 a.m. Can’t sleep. Insomnia. Bo came to visit today. He and Michelle helped launch Lunges4Lungs, the social media campaign we’re doing for transplant rejection. It’s crazy that more attention hasn’t been paid to this serious problem.
I’m reading about the origins of humanity and the divergence between African Homo sapiens and European Homo sapiens and the difference between Neanderthals and Cro-Magnons, and it’s reminding me that I used to be intellectually interested in things, and that I used to have a spirit of adventure. The idea of going places used to excite me, not fill me with a sense of panic and dread. And I just want to COMMIT to myself that I WILL get that back one day. One day, after transplant, when every day isn’t a struggle to survive, when I’m not aching and short of breath and nauseous and exhausted all the time, I WILL travel. I will appreciate wherever I live but I will also get out and see the world, knowing we don’t have all the time in the world.
Caleigh has to be listed for a SECOND double-lung transplant. I can’t believe it. It hasn’t even been two years since her first one!! And she’s had like three major health struggles since her first transplant, so it really seems like she can’t catch a break.
7/8/17
Caleigh got rejected from Stanford for a second lung transplant. So now they’re looking into coming to Pittsburgh. I hope so badly that it works out for them. I got a bad feeling about it when they suddenly discharged her from the hospital two days after telling her she’d have to stay inpatient until the next transplant. It seems as if they’re giving up on her and they want her to spend her last days outside, enjoying herself. She has so much will to live, and I hate when centers are so utilitarian in their thinking; that’s what led everyone to reject me, too.
7/17/17
I’ve been having a lot of small bouts of hemoptysis recently.
Because I’ve had to skip so many treatments lately, post-hemoptysis, I feel more short of breath and have had more tachycardia. My last blood work showed I’m low on vitamin A and now I’m wondering if maybe I’m low on vitamin K, too, and that’s why I keep bleeding day after day?
8/3/17—Diane Shader Smith
At 8:30 the other night, I parked in a handicap space across the street from Millie’s Homemade Ice Cream so we could get dessert—one of the simple pleasures Mallory can still enjoy as she is tethered to oxygen and at the end stage of her battle with cystic fibrosis.
When we were coming out of Millie’s I saw that a tow truck had my car on it and was ready to drive away. I ran across the street and told the driver that my daughter was at Millie’s and I needed to go get her as it’s hard for her to walk because of her medical situation.
The driver said, “I don’t care what your daughter has—you can only have your car if you give me $200.” I said I didn’t have that much cash on me so he told me I’d need to pick up my car at their impound lot. I told him I wanted to call the police because she has a valid handicap placard and the proper paperwork but more important, if he took my car I wouldn’t be able to get my daughter home and her oxygen tank was running out.
The driver was beyond nasty and again said he didn’t care what my problem was. He started to get in his truck to drive off, so I opened my car door and straddled the seat so he couldn’t move without hurting me. I called 9-1-1 and explained the situation.
The nice police officer who answered said to stay put and tell the tow truck driver that the police were on the way. I started crying when I was on the phone because I felt helpless. Mallory was with me by now, standing to the side, visibly upset about what was happening. She was connected to O2 with two IVs running simultaneously. Anyone seeing her could only feel pity. That the driver ignored her and her situation left me stunned. And PISSED.
And then the driver just let my car down and drove off. I said thank you. But then three women and one man who were standing off to the side—a group I had noticed but not thought anything of—approached me. One said, “Don’t thank him, we paid him to leave your car.” I was STUNNED. I didn’t know these people. I was deeply distraught and unsure what to do and they stepped in to help. They said they gave him $100 to go away and then refused to take any money from me, saying they know how many expenses we’ll have after transplant and to use the money for my daughter.
I asked the woman who actually paid the driver what her name was and she said Jeanette Ware. I was in shock that people we’d never met before would do that for us. She said, “Welcome to Pittsburgh.”
8/15/17
Feeling really good about things:
1. Even though UPMC only has one surgeon now, there’s a chance I could get double-listed at Tampa—thank you, David!! And my health is stable right now, so I am in a position to wait a while (fingers crossed it stays that way).
2. Jack came to visit this past weekend and it was wonderful. It was just the two of us, with neither of my parents here until my mom arrived late Saturday night. It was super low-key. Friday we had to stay in all day to wait for oxygen deliveries because my concentrator was broken, but it was lovely. Then in the late
afternoon I tried to take a nap while he went to Whole Foods, and then he cooked an incredible dinner for us. He made rosemary duck, golden beets, yams, and tomato avocado salad. The next day was also really low-key, but we did get to take a walk and watch people play kickball at the park nearby. Things with us are so good right now, very loving and tender.
3. I’m on a mission to introduce new things into my life now that I feel like we’re really going to be here for a while. I went to a yoga class for the first time in eleven months last night! My last yoga class was on Union Street in S.F., last September, the morning before I went back to L.A. because my grandma got diagnosed with cancer.
4. I’m going to try really hard to make the most of my time in Pittsburgh. I don’t want to waste any days that I feel good. I want to have lists of things I love to do ready, so that on any day I feel good enough, I can do something!
8/22/17
It’s Micah’s birthday today! Wish I could be with him.
8/25/17
I GOT ANOTHER CALL FOR LUNGS!!! It was 7 a.m. and for some reason my phone didn’t ring so they called my mom.
It’s so funny because we had been despairing lately about how it felt like it was never going to happen and how we could still be waiting a year from now. And then the call came!! The lungs were increased risk and had to be on EVLP. Dr. D’Cunha reassured us that they don’t use lungs if they’re subpar.
I wonder if this call has anything to do with my score going up two days ago in clinic? You never want to decline, but when you’re waiting for lungs, the sicker you get the more likely you are to get lungs.
Salt in My Soul Page 25