Daybook No. 98

Outside my window:: Sunny but also cloudy, if that makes sense. I guess the weatherman would call this "partly sunny"? Or "partly cloudy"? (I never did understand the distinction.)

In the CD player:: 1776 soundtrack.

Wearing:: My PJs. I know. So unexciting. But all my pretty clothes are packed away for vacation!

Reading:: Reclaiming Catholic Social Teaching; The Whole World Over; Mansfield Park; Lisette's List. I also have a bunch of books packed for vacation, including Middlemarch, The Forsythe Saga, The Girl On A Train; A Memory of Violets; Mr. Penumbra's 24 Hour Bookstore, and a few more.

Yes, I bring lots of books when I go on vacation. It's often like this:

Links you may have missed:: Jane Re-Read: Pride and Prejudice; Sketchbook Skool; The Declaration 

Crafting:: I"ve got some knitting packed for Edel, because there are going to be excellent knitters there, and I need someone to teach me to purl consistently! I've also got my scarf and washcloth still on the needles.

From the kitchen:: Not much, since we're leaving soon! I'm looking forward to excellent Charleston food!

Keeping House:: Cleaning before I leave--making sure all the trash is out, and things are generally tidy, so when I come home it won't be a disaster. And of course, packing.

Fitness: Today is a yoga day, and tomorrow is a gym day. I am packing gym clothes for vacation (the hotel has a gym), but I think the normal run of things might be enough! We'll see, though. Better to be prepared, right?

Prayer:: Really trying to keep to my "horarium", as I'm calling it. That means prayer in the morning (lauds) with some devotional reading; midday prayer (noon) if I don't make it to Mass; Divine Mercy chaplet and Office of Readings at 3:00 (and rosary, if I have time); Vespers between 5 and 5:30 (with rosary after, if I didn't get to it already), and compline between 7:45 and 8:45, depending on what's going on. This is, actually, a copy of a few monastic schedules. It's not every hour of the office, but it's a majority of them (It's four, and there's seven hours of the office). As a Lay Dominican, lauds, vespers and rosary are required every day. But I really like the office of readings, and compline is special to Dominicans. And of course, Daily Mass when I can.

There will be an adoration chapel set up at Edel on Saturday, which makes me crazy happy.

This week:: Um, vacation? :) Edel is Friday and Saturday. So excited for that. 10 Year Anniversary is on Saturday as well! Rejoice! :)

Some cuteness: Princess Charlotte and her family at her baptism yesterday. The baptism was held at St. Mary Magdalene church in Sandringham.

Seven Quick Takes No. 79--A Trip to Pittsburgh

I.

We spent last weekend and part of this week in Pittsburgh celebrating my grandma's 85th birthday.

 We celebrated by taking a dinner cruise on the Gateway Clipper Fleet, which was a great meal and boat ride around the three rivers of Pittsburgh. We sailed by PNC Park, Heinz Field, the Point, and other Pittsburgh landmarks. Quite a bit of the family-- though not all--was there, and it was a fun way to celebrate.

II.

One of the best parts was seeing my cousin Diane, and especially meeting her newest baby (above with Dad). She has two older daughters, whom I'd met before, but I'd never met this little guy, who turns 1 in August.

III.

The next day we went to PNC Park to see the Pirates beat the Phillies in extra innings. I'd never been to a Pirates game where they won, so I was pretty excited about that! Dad taught me how to fill out the scorecard that was in the game program, so I feel very educated in the Ways of Baseball. (Sort of. I find baseball always has new ways to confuse me.)

Our seats were behind home plate and under the overhang of the upper deck, so we were in shade, which was great when it was 85+ degrees.

III.

 After the game we had another party at one of my aunt's houses. She has a pool and her husband grilled, and there was, of course, jello marshmallow salad, because it's not a family gathering on my mom's side without jello marshmallow salad.

Grandma received cards and presents, and then there was Bethel Bakery cake, which is the Best Cake in the Universe. Not kidding. Our swimming was curtailed because of a huge thunderstorm that opened up, but that didn't deter the youngest from having fun....

IV.

Diane's oldest girl (seen above, in the pink glasses) and I:

Me: So, Susie, what's your favorite movie? Susie: Frozen.

Me: OK. What's your favorite song? Susie: (As if I am deeply, deeply stupid) "Let it Go." Me: Well, there are other songs in the movie. Susie: No there aren't.

V.

Monday we went to Kennywood, where I hadn't been in over ten years, so it was nice to be back, and Diane's husband had never been there at all. Susie and I had fun riding rides, but when I took Bridget on the carousel, she seemed a bit wary, until the ride starting going. She also really enjoyed the ice cream cone.

 VI.

Kennywood really does have things for everyone, which makes it fun, but my grandpa's favorite ride was "The Restaurant", so we had dinner there. It's a large cafeteria style place and it has good food and, the real winning point, air conditioning. It was hot, so we got a lot of water rides under our belts, and then dried off with roller coasters.

VII.

Of course, some of us couldn't handle all the excitement:

Daybook No. 97

(it's back!)

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!

Wearing::

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

Reading::

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.

Writing::

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)

Creativity::

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.

Pondering::

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. I 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

I.

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

II.

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?

III.

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.

IV.

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!

V.

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?"

VI.

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.

VII.

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!

Photo Essay: Franciscan Monastery, Washington D.C.