Daybook No. 97

(it’s back!)

daybook tag

Outside my window::

Sunny through thin white clouds. It’s not going to be very warm today–well, warm for June–so swimming is probably out, but that’s OK!


Jeans, a bright blue v-neck t-shirt, and flats.


Working on Northanger Abbey. I finished Prodigal Summer yesterday, and man, I wish Barbara Kingsolver would write a sequel. It’s that kind of novel where you want to stay with the characters for a long time, even after the book is finished. I’m reading The One Thing is Three for my spiritual reading. The rest of the fiction pile includes The Forsyte Saga and A God In Ruins, and then I’ve got What Matters In Jane Austen and Jane Austen’s England. So a variety of things on the reading pile!

In the CD player::

The Light in the Piazza, celebrating Kelli O’Hara’s Tony win.


This week I’m doing something different with LA–I’m going back to doing the link-ups/weekly features that I’ve sort of been neglecting amidst the new writing plan. So tomorrow is the Yarn Along, Thursday I’m talking about Sketchbook Skool, and then Friday we’ll have Quick Takes. I’m also going to get some things pre-written because I’ll be in Pittsburgh until Tuesday.

The Dominican section of the memoir continues apace. It’s sort of a complex section to write but the goal here is to get it down into a physical form on “paper” (or, in a Pages document). Then I can revise it. I’m hoping to have the section done by the end of the month so that in July, when I’m back from Charleston, I can start sending out queries and book proposals. (EEEEEK)


You’ll have to come back tomorrow and Thursday to read about that. 🙂 But really, it’s been really interesting in this area lately.

Health stuff::

So yesterday was my Annual Clinic Day of Testing for Transplant Guys. 🙂 Basically, all the yearly tests we do, I did yesterday. That involved lots of blood-letting, full PFTs (Pulmonary Function Tests–“full” meaning more than just the basic test I do every visit. We checked gas diffusions in my lungs and some other fun things), a CT scan of my lungs, bone density scan, and an abdominal ultrasound, which looks at my spleen, liver, kidneys, all that sort of stuff.

I lost five pounds “officially” in clinic (I told the dietician that I had lost 10 lbs at one point, but the loss doesn’t want to stay there, sadly), and the PFTs went up four points. So win to that correlation. Everyone’s happy with that. I haven’t gotten the results back yet from the other tests. (Other than things like my regular chest X-ray, which looked fine and dandy–we saw that in clinic.)

Today I’m going to see my ENT so he can check out my sinuses. I see him about every six months, and about every two years, we do the sinus surgery. This is because even though my lungs don’t have CF, the rest of my body does, so we still have to keep the sinuses happy. They tend to fill with the CF-quality mucus and that can be a huge breeding ground for infection. Fortunately, I don’t have nearly as many sinus issues as some other CF folks I know.


I normally don’t talk to many–if any–other patients when I’m at Children’s. Part of that is because I don’t really talk in waiting rooms, at all, and partially because a lot of the time, I’m alone. In clinic, I’m in my own room, and in radiology, the transplant/cancer patients sit in the radiology hallway itself, not in the general waiting room, because of concerns about sick people.

I’m really familiar with the radiology hallway. It used to be main radiology for the entire hospital, so I’ve come here as an ER patient, as a CF outpatient, and in the days after transplant, at 6 AM, before the hospital was really “up”, so I the chances of me running into a sick person (or anyone else) were really slim. I know all the radiology techs really well, and know some of them by name.

There are three chairs set up outside the main waiting room door for transplant/oncology patients. Sometimes it’s me and other transplant patients who are being seen that day (we all have the same routine–blood work, x-rays, clinic), but mostly it’s just me.

Yesterday there was a small family: a boy, a girl, and the mother. The kids looked to be in high school. I knew the boy was a transplant patient because 1) he was wearing a Dash for Donation shirt (it’s the annual Lifeline of Ohio race), and 2) he had a mask on. Most of us wear masks in the hospital. I hate wearing them so I generally don’t. (yeah, I’m a rebel.)

But the boy looked so sick. I couldn’t tell if he was pre or post-transplant. He was so thin I could see the ligaments in his legs around his knees, the tendons popping out. His shirt hung on his, and he was in a wheelchair. He didn’t really look anywhere, other than vaguely at his lap. His sister was plugging away at Facebook on her phone, but he just sat there, vaguely thinking about something.

I knew that look. I’d been there. It’s the look of not really having the brain power to do anything else but tend to the function of your body. Breathe, sit up. Breathe.

He went back for X-rays, and I talked briefly to his sister–small things, about the waiting area, her sparkly phone cover. Her brother came back quickly and they were gone, heading up to clinic.

The radiology technician called me to a room. “He’s rejecting,” she told me.

“How far out is he?”

“Five years.”

Ah, five years. Five is a magical number. About half make it to five years–it’s a little less than that, for girls. UNOS (United Network for Organ Sharing) doesn’t even have 10 year stats on their website, yet, for lung transplant patients. At hitting 10 years, I’m sort of a statistical anomaly. Five years is becoming more common, but 10 is still out there, and the people I know who are 15+ years have had two transplants.

I am extremely, extremely lucky. And it could all change, but right now, the fact that I’m this far out, and that I’ll be celebrating my 10 year mark in a month, is incredibly fortunate. am incredibly fortunate.

Plans for the Week::

I have a Summa Theologica class at church on Wednesday–this just started last week–which means I have to read Question 2 of Part 1 today so I’m ready to talk about it tomorrow. 🙂 On Friday I have another doctor appointment and then I leave for Pittsburgh on Saturday!

(note: that lovely photo of bluebells? Elizabeth Foss took that. 🙂 I hope she doesn’t mind that I borrowed it from her website! It’s just so gorgeous.)

Seven Quick Takes No. 78

It's Friday, so that means Seven Quick Takes! @emily_m_deardo


mmmm. Summer Friday. Those are beautiful words in the English language, no? 🙂


Since it’s summer, more people read. You can, of course, join the Jane Re-Read (Sense and Sensibility is what we’re talking right now). I’m still reading Prodigal Summer and Northanger Abbey. I just finished I Believe In Love, about St. Therese of Liseux and how she can lead us to a deeper spiritual life, and I really liked that one. There’s a lot to ponder and I’ll definitely be reading it again. (Who am I kidding. I read everything again….unless it’s Moby Dick or Portrait of the Artist as a Young Man. Shudder!)

I keep debating if I should read Girl on a Train. Yes? No? Thoughts?


My 10 year transplant testing appointment is on Monday. To put this in perspective: UNOS (the United Network for Organ Sharing, which “does” transplants in the U.S.) doesn’t even have 10 year survival rates on their chart. The last one they have is 5 years out, and for women, that rate is 46.1%. I read somewhere that 10 year survival is around 30%, but I forget where.
So, for ONCE, the odds have been playing nicely with me. I rejoice in this. The actual 10 year date is in July, but we do the testing in June, usually.


I’ve discovered that a lot of women don’t know basic maintenance things. This sort of scares me, ladies. You should know to put gas in the car (and what kind of gas), how to jump a car battery, how to use tools, how to unclog a toilet. Even if you’re married, your husband isn’t aways around to fix things! I’m amazed at how many women I know who can’t do any of these things and I want to be like, girls. Come on now!


My brother’s girlfriend sent me this photo of him at Disneyland, and I just love it:


As Br. H said, “How many Evil Empires can you fit in one picture?”


I’ve started swimming again–yay! But man, the muscles feel it when you swim hard for the first time in a season. They rebel the next day. But it’s so good to be in swim season again, I do not mind at all.


Almost time for Edel 2015 in Charleston! I’m so excited!! I’ve never been to South Carolina and I can’t wait to meet all the amazing women who will be there!

Daybook 76

Daybook 76

Outside my window::

Totally clouded over. It was really pretty but really humid yesterday, and I think it’s raining outside now. Not that I mind rain and clouds, because they’re good knitting/reading/tea days.


Jeans and an Oakland Zoo (Pitt) t-shirt. I’m being lazy right now.


Jodi Picoult’s Leaving Time comes out today. I was very lucky to snatch up an ARC (advanced reading copy) at an event a few weeks ago, and I have to tell you, this book is amazing. Read it. I want to write more about this book but not until more peeps have read it, so….get on it. 🙂

Taking up Swann’s Way again as well. During Tech Week/Performance weeks I load up my bag with books I’ve been meaning to read, and this is on the top of the pile. I re-read The Joy Luck Club earlier this week and found I really didn’t like the book as much as the movie! Also re-reading Outlander, and I’m on An Echo In The Bone.


A lot on this front. Dolly opens on Friday–gulp gulp double gulp. NaNoWriMo 2014 is live, so I’ve been drafting out my novel for that–thus far it involves opera and Italians (a good combination, of course!). And I’ve also been knitting. I can purl fine when I do an entire row of purl, but when I start with a knit stitch border it all goes to hell. Ideas? I really want to start a basket weave scarf but I can’t if I can’t manage to knit and purl in the same row!


Well I have lots of plans but this week is a mess with the cooking…so busy. Trying valiantly and possibly failing to get it under control!


my sister is in town! She moved to Texas over the summer and this is her first trip back since then. Her birthday is on Friday so we celebrated early on Sunday at a local restaurant. Yesterday we had lunch and coffee together before I had to run to a doctor’s appointment. It’s been great to see her!


Well, Dolly, really, all the time. We’re in dress rehearsals now. I’m hoping on of the lovely ladies in the cast can do something with my ridiculous hair….I am so hair impaired it’s not even funny.


I went to the dermatologist yesterday. Part of post-transplant life is making sure that you take care of your skin with sun protection, because we are super photosensitive (meaning we can burn a lot faster than other people due to the meds), and getting regular skin checks. I go about every six months. Nothing out of the ordinary at this appointment so that’s a good thing. We have a much higher risk of cancer compared to the general population, and skin cancer in particular, so it’s very important to stay on top of these things. Fortunately I’ve never been much of a sun bunny.

Around the house::

Today is a house day, meaning I’m going to clean and tackle some projects here (filing, bill paying, etc.) that I need to do. This gets super important during tech week because otherwise the house can become a monster of utterly terrifying proportions due to neglect. 😛

From the iPhone:

chalk ohio

During a local shopping district’s chalk art festival–isn’t this great?

Seven Quick Takes Vol. 36



I am a Hothian


I have not, yet, slept inside a Tauntan.


It’s actually not cold right now. I mean, “cold” as we’ve experienced it this winter. It’s about 35 degrees out right now, so I’ll take that.  Go warmth! 🙂


I had an audition for The Miracle Worker yesterday. I’ve loved this play since I first read it in junior high, and getting a part is high on my theater bucket list. I read two scenes as Kate (Helen’s mom) and should hear sometime this week. I would love to do this show, so…fingers crossed!


CCD funny from today:

Me: Saints weren’t always saints. We’ve had saints who were alcoholics.

Girl in back: puts her hands over her mouth and gasps loudly.

I had to stop myself from laughing. It was great.


After a brief downward trend, my PFTs (pulmonary function) has bounced back about 50 again so that makes me very, very happy. When I get blow 50 I get cranky. About 50, and we’re pretty good. I’m still on antibiotics that my ENT prescribed…not really sure if they’re doing anything, but whatever, right? I see him again on Valentine’s Day to see if I will need sinus surgery this year.


Reading: Just finished a great new novel, Under the Wide and Starry Sky, about Robert Louis Stevenson and his wife, Fanny. A very good read. I’m also reading Provence 1970Pickwick Papers, Drums of Autumn (re-reading the Outlander series), Forth and Abroad, and I won a copy of A Star for Mrs. Blake, which should be arriving this week. I love Goodreads giveaways, people. I’ll have a review for Mrs. Blake up here once I’ve read it. The point of giveaways is to get good press for the book, so I’ll write a review (and hope it’s a good one.)


In the Oscar sweeps: I’ve seen FrozenDespicable Me 2, and Captain Phillips. I really hope that the actor from Captain Phillips wins Best Supporting Actor, because he’s great. The movie itself was very suspenseful and well-acted (especially the last scene).

What defines you?

This is something that’s always bothered me and recently I’ve felt the need to articulate it.

Maybe it’s simply become more prevalent in the internet blogging age, but I see a LOT of people who blog where they totally define themselves by something that’s wrong with them. Some of these parents completely define (this is mostly parents, I’ve seen) their children by these facts.

This bothers me. If my parents had done this, I would’ve been so perturbed. No one’s parents are perfect, but I’ve had something wrong with me since I was a bit over a year old. Before being diagnosed with CF at 11, I had seizures. But I took swimming lessons, dance lessons. My parents took us to Disney World. We went to theme parks. After my CF diagnosis, I wasn’t given any “special” quarter. My parents didn’t deny me things like class trips to Disney, or anything like that. I wanted to be seen as normal, as much as possible. They treated me, as much as possible, like my other two “Normal” siblings.

So when I see parents who are so worried about their children that they won’t take them to theme parks, or to REGULAR parks (and CF kids do NOT have compromised immune systems, guys); who title their blogs with things like “CF (kid’s name)” or “CF Warrior So and So”, I feel bad for these kids. Because how are they supposed to see themselves as more than a disease if their parents very publicly do these things?

Personally, I only told people I had CF when they needed to know. My teachers only knew if I was on IVs, and then I needed extra time to get to class, because my school had 2000 plus kids and 4 minutes to get to class. Jostling in the hallways, not good. A really heavy backpack with a PICC line, not good. So I had extra time to get books and get to my next class.

I made up all my work. Always. Once I missed an Algebra II exam because my PICC line decided to start bleeding out in the middle of the night. (Yeah, that was fun.) After getting it fixed after an hour or so on the phone, I went back to bed, my mom called the school, I took the exam that afternoon. (believe me, I need all my mental powers for algebra…)

I see parents who treat their kids like they are precious pieces of porcelain that are going to shatter at the lightest touch. They have made their kids entire existence about a disease.

I do not, ever, want to be defined by the fact that I have a sucky genetic code. If I had to define myself as anything, it would be: Catholic. American. Italian/German/Scots-Irish. Writer. Sister. Daughter. Friend. Actress. Those sorts of things. Not “Oh, a kid with a bad genetic code.”

It makes me sad because I see these parents and I think, do you know what you’re doing to your kid? I feel like you’re stunting them. There’s a line between “My kid can do anything!” and “my kid can do nothing.” It’s called reality. I will never climb Everest, OK? I’m cool with that. I will never have kids. I’m also cool with that. (And that took a long time to get cool with, people. ) I may get married. I may not.

My life is not defined by things I can’t control. To me that’s like defining yourself by skin or eye color, or height. It’s not who you are . It’s something that is part of the puzzle, sure. But it’s not what I am.

I believe, of course, in awareness. Now I talk about organ donation a TON because I want to get more donors. I’m open about it in a way I wasn’t with my CF. Maybe it’s because it’s so easy to effect change. Be an organ donor. Save lives. Boom. Also, people don’t know a lot about genetic diseases. They can be afraid it’s ‘contagious’. So awareness is important, there, too, but it’s also harder.

I’ve had people reject me because of this stuff. I’ve had guys break up with me over it. And you know? That’s just part of it. But it’s not, and never will be, how I define myself. And it makes me sad when parents do that to their kids, because they are laying a mental groundwork that can be hard to overcome later.

I don’t want pity, and I don’t want special treatment. I’m not made of glass. Accommodation when needed, yes. I have a lot more doctor appointments than most people. I have my transplant team, my ENT, a cardiologist, a dentist, an eye doctor, an OB/GYN, a PCP (that I never see but that’s another story), a dermatologist, an audiologist. The list is long. Yes, I can get sick easier than most people, hence my “get a flu shot” campaign. But don’t treat me like I’m less because of these things. I am what I am, and this has made me what I am. But it’s not how I choose to define myself, or talk about myself.

I use this blog, sort of, as a platform for awareness and education of CF and lung transplant. Transplant, especially lungs, is a bit of a Brave New World of medicine. By talking about it, I’m hoping people will learn about it. But I don’t want to be the transplant kid, or a walking medical guinea pig, although I am those things. 🙂 I want to be something better.

I don’t know if this really makes sense. But this is something that’s been on my mind for awhile. Don’t define people by what they might “have” or “what’s wrong” with them.

For example: My CCD class has one kid who is blind. But you know, I don’t even think about that anymore. Yes, if people bring in something he can touch to cement a lesson, we let him touch it. But he’s so whip smart and adorable and just endearing that he’s just him. He’s not “the blind kid”.

Seven Quick Takes Friday Vol. 23



This is the transplant anniversary and Les Miz post. 🙂 On Monday I went to Children’s for day one of my annual testing. This included blood work, chest x-ray, PFTs, a six minute walk, and a bone density scan, as well as a talk with my doctors, the social worker, and the dietician on the team.

The social worker can help with any sort of insurance questions, family support, etc., that you may need. I had a few questions regarding the Finance Office, but other than that, I’m easy for her. 🙂 The dietician and I touched base about my activity level and diet. My doctors are very pleased with how I’m doing. My PFTs are stable, and my bone density is actually normal! Go cheese !

The only thing that wasn’t normal was my triglyceride level. I’ve always had high triglycerides, as do a lot of people in my family (on my mom’s side), so this is genetic and also medicinially based (the immunosuppressants give you high cholesterol, no matter what.) We’ve tried lots of statins (drugs to reduce your cholesterol, like Lipitor) and I just can’t tolerate them. I have awful bone pain and extreme lethargy.

So the team was powwowing about the results and one of my docs said, “Let’s try red wine.” No, I’m not kidding. So I’m supposed to have one glass (maximum) of red wine a day. That’s a prescription I an willing to try, right? 🙂 So–here comes the wine!


The transplant anniversary is always a mighty powerful day. It’s a day of resurrection, of new chances, of celebrating being alive. (Cue the song from Company)

(yeah, video clip!)

Or, as Emily Webb said in Our Town: “Do humans ever realize why they live it? Every, every minute?”


This year the transplant anniversary fell on our last day of Les Miz tech week. We were warming up, preparing to go on, when my friend Bethany steps up and starts talking about me….and I turn bright red. One of the girls gave me a bouquet of flowers and Doug, our Javert, led everyone in singing happy anniversary to me. I was so touched by this. My friend Abby and our director, Robin, were also behind this scheme. I felt so loved. Afterwards a lot of people asked me questions (including the 11 year old playing Gavroche), and I was happy to  answer them. I just felt so wonderful. Thanks to all of you (again!)


Also on my anniversary, I got to have lunch with my transplant nurse, Karen, and her precious little girls. I just love spending time with her. She was a great nurse and she’s also a fantastic friend. Her little girls are 5 and 2, and they are adorable and fun. They also have two Westies that I adore (except for when one of them brings me dead Rabbits that he’s killed, but that’s another story…) And Karen’s husband is pretty awesome, too. Basically I just love that family. A true gift of Transplant has been getting to know them!


So this year was the 8 year anniversary. That’s a pretty darn good milestone, given that only about half of the lung transplant patients make it to 5 years. Lung transplants are not done nearly as often as other organs, so we’re still setting precedents, in a sense. 🙂 There’s so much we still don’t know about transplant science, in general. So I’m very glad that I’m doing so well.


Opening night for Les Miz was last night. We had a full house (really. Full house) and got an immediate standing ovation after the finale. I clutched hands with the girl next to me–we were so happy and proud and excited. It was truly a memorable night. Tomorrow and tonight are the last two performances.


A few fun transplant facts for you: My surgery was over 12 hours long; My lungs were too big for me, so my center trimmed them; they came from Minnesota, from a 50ish year old woman who died of a brain aneurysm. I am so thankful to her and her family for giving me the ability to sit here and type to y’all. 🙂

Seven Quick Takes Friday Vol. 22



I hope all my American readers had a Glorious Fourth! (I’m assuming not all of you are Americans…I could be wrong in this) It rained on and off here, which lead to a crazy packed movie theater. My brother, his girlfriend and I went to see Despicable Me 2, because sometimes you need minions in your life.



If you haven’t seen the first one, that’s OK. This isn’t a movie that requires you to have seen the first one, although I do recommend it, just because it’s super-cute.

After the minions, my parents and I had dinner at Max and Erma’s. Nothing quite says the Fourth like a big cheeseburger and a cookie. I finished the day by making a raspberry cream pie and watching 1776: “This is a revolution, damn it! We’re going to offend somebody!”


Today I also have off, so I’m cleaning, cooking, reading, and then going to Act II music tech rehearsal tonight. Music tech is where you just practice the music without costumes, lights, all that stuff. Sometimes it’s called a sitzprobe, but we don’t sit. We block per usual. But the focus is on the music, first and foremost. Also in music tech, we’re working from the top down–meaning the numbers with the biggest number of people, down to the solos. (In a sitzprobe, you sing through the whole show, in order.) So since I’m only in the Finale, I hope that this means short rehearsal for moi. Because tomorrow starts…


Tech week.

Tech week is where all the parts of the show come together: lighting, any special effects, costumes, scenery, music from the pit. Everything at one time. Now, we have really been ahead of the game this year in that we’ve been doing lights, moving scenery and props in and out of the scenes, and even incorporating some costumes, for the past week. So I think it will go more smoothly than tech usually goes for a show of this size. At least I’m hoping so. We start at 9 AM and go until we’re done. People usually bring lots of food so we can fortify ourselves when we’re not on stage. 🙂 I probably won’t be in full costume tomorrow–just some pieces, but will start full costume next week. We’ve got a pretty quick change between “At the End of the Day” and “Lovely Ladies”–just “I Dreamed A Dream” is between them–and the LL costumes are fairly elaborate.


Speaking of LL costumes–yesterday I made my hat! I’ll have pictures up later, but basically I took a star hat frame and added a ribbon, feathers, and a cluster of flowers. It’s so adorable. I love it! Maybe I should’ve been a milliner?


Pope Francis’ first encyclical is out today. Read it here. It’s been called and encyclical written “with four hands”, because B XVI began it, so I’m really interested to read the final result. (Which I will do after this is up) In other church news: two new Saints! Bl. John Paul II and Bl. John XXIII are going to be canonized. Rock on!


Books I read this week: Kisses from Katie; started Jane Austen: A Life In Small Things, and Love Walked In.


Monday and Tuesday are my annual testing-palooza at the resort (AKA Nationwide Children’s). Let the fun begin! I’m sure most of the tests will be fine; I’ve been feeling great. But one never knows.