Em sneezed all night (Portland pollen) and kept me awake so I’m super tired today, argh. She and Sal went to Henry’s to play and garden, and I did Procreate all day. Here’s mah ARTS! Read the Pixelfed caption to find out how I added texture to the stained glass.
We ate some lunch and hung around and I had a little nap while she watched YouTube and was self-sufficient. Now I’ve put on an episode of Taskmaster to see if it grabs her :D
Emma is here! Emma is here! Henry picked her up at the airport and brought her to us around 9pm.
I did Procreate all day, except I also drove to the good bagel store (Henry Higgins Boiled Bagels) for a baker’s dozen, and then Dave and I went to our local independent pet store for food for Owen. He’ll be here a week from tomorrow <3
Mom cleaned all our floors and tidied up the garden on the back porch and bought seedlings and planted them! All I need to do is keep them watered and cross my fingers. Tomatoes, chard, cucumbers, zucchini, nasturtiums, and sunflowers. Plus the strawberries from last year are doing great, and have spread from one to three pots.
I did Procreate art all day. Finished the stained glass tutorial that I started yesterday (sun and flowers), and then did another stained glass window out of my imagination (diamonds). It’s so annoying that pixelfed won’t embed anymore! Argh! But here’s a link.
Oh! I only weighed 101.2 this morning! My abdomen STILL has extra fluid but I’m so much more comfortable!! Good Zoom appointment with my cardiologist. She says I can use my own judgement and take more metolazone whenever I want, not just once a week. So that’s great, I’ll be able to remain comfortable and to eat well.
Down three more pounds to 102! My belly feels so much better. I can eat almost a whole Kara-normal meal at one sitting, slowly. Strawberries and cream for breakfast, cream of wheat for lunch, apple and goat cheese for a snack, full-size quesadilla with tomato for dinner. Also plenty of juice and water. So thirsty (of course) but being careful not to over-hydrate.
Mom is here! She tidied up my garden area and will plant some easy seedlings tomorrow. We watched Mad Mad Mad Mad World and she ate the big slice of lemon cake I’d set aside for her :D
Finished my Jane Casey crime thriller (The Kill) and have started another book from my giant pile of library books, one of the rom-coms. Can’t remember title at the moment…
Lots of Procreate today! Learned to make a 6-sided mandala and am working through a long stained-glass effect tute. But time to sleep.
So I took my mega-diuretic (metolazone) yesterday and peed all day and all night. Literally five pounds lighter today. Lol. Abdomen felt a lot less full this morning and eating was more comfortable, which was so nice. Feels like I’m filling back up, though. Oh well. My poor old organs are doing the best they can.
I did Procreate tutorials all day! It’s so much fun! Em and I just FaceTimed and did one together, an easy one that I did yesterday so I could describe all the steps to her. I like to do each one several times to get comfortable with the options and get them into muscle memory. We are gonna draw and draw when she visits on the weekend! She’s flying up here all by herself, just to spend the weekend with me. We can put a YouTube tutorial up on the TV and sit together and draw on our iPads.
Mm wow I just got really really tired. I stayed up too late last night, reading and drawing and peeing. Gonna make a quesadilla and hit the hay early. Mom will be here tomorrow!
We have adopted Owen! We had a long and VERY THOROUGH phone interview today, his adoption coordinator checked our personal references, we signed the lengthy contract and paid the fees. He will travel by air-conditioned truck, with personal attendants and a load of other adoptees, all the way from Texas to join us on June 3rd.
In other news, I drove today for the first time since hospital. Went to Roake’s, a nearby hot dog stand that has been here since 1937. I’m not wasting any more time getting around to trying out some cool Portland spots! I got the Short Dog with mustard, relish, and kraut. Delicious and flavorful, on a soft white bun. No gourmet vegan sprouted spelt flour here — good old fashioned satisfying hot dogs. The Short Dog was just the right amount of food, along with a small coffee shake from nearby Burgerville. (Roake’s shake machine is broken)
Gained 2 pounds overnight, grr. Too much fluid! So I took one of the special high-powered diuretics that I can have once a week. Been peeing all day lol. I’m still uncomfortably full-feeling but I was able to eat a bit more at each meal today.
It’s so nice to wake up, still alive, after a pretty decent night, and come out to the lounge to find my Beloved Englishman, still alive and drinking his tea. And to know we have another whole day together.
I wanted to learn something new and I really enjoy fooling around with digital art, so yesterday I bought Procreate for my iPad and have started working through the excellent tutorials on YouTube. I’ve been using SketchClub for over a decade. SketchClub is great but damn Procreate is AMAZING! Gonna go do another tutorial now. Really glad it’s not a subscription model too. One flat price, $15 or so. Otherwise I would not have bought it.
Nice quiet day, no visitors. Over the first half of the day I ate another bagel with cream cheese and tomatoes and capers and smoked salmon (for the protein, I don’t love it). I have a tremendous appetite and food tastes really good again, I just can’t eat much at once because my abdomen is still full of fluid. I haven’t lost any weight in three days, despite the endless peeing. Probably because I have a constant burning thirst. Body trying to get rid of hospital drugs? Might be time for the optional Ultra Diuretic tomorrow.
Lots of embroidery, and catching up on Survivor, and reading, and audiobooks.
Phone interview tomorrow with Owen’s rescue organization, 3LP, to see if we’re all well-suited. 3LP rescues homeless and abandoned animals in the Houston TX area and adopts them out to northern states where there’s less of an unwanted animal problem. They’ll send Owen to us in an air-conditioned truck with personal attendants, if we get to adopt him. Pretty amazing! People are wonderful when they’re not terrible. Lol.
Look at the previous post! I wrote up my amazing cake recipe!
Scott came over at 10, bringing bagels, cream cheese, capers, olives, onions, tomatoes, and smoked salmon. He wanted to bring lox but didn’t know where to get any in Portland. I promised to acquire some and try it. He says it’s briny, and I like briny things!
The whole Henry tribe came over too. We ate and the kids ran around and played and met their great great uncle! A happy time was had by all and I am EXHAUSTED and going to BED. :)
Oh god this is good. So light, so fluffy, so lemony. I tinkered with all the recipes until they were just right. You’ll need a lot of lemons and a chiffon cake pan, the kind with a tube in the middle and little feet to rest on when you flip it upside-down. I got mine at the Goodwill for like $3.
I did this in several stages because I’m tired. Cake one day, wrapped up well and waiting in the fridge. Lemon Goop the next day. The rest of the filling the next day. Then assembled on the fourth day.
Don’t be intimidated! Everything is easy. Just read it all very carefully before you begin.
First make the filling so it can chill:
Kara’s Lemon Cake Filling
Description: Enough light yummy lemon filling for a big three-layer cake. Lighter than traditional cream cheese frosting; richer than plain whipped cream. You’ll need a lot of lemons! Tip: keep a bag of lemons in the freezer.
Ingredients
Lemon Goop 3/4 cups granulated sugar 1/6 cup cornstarch 1 c combined lemon juice and water, half each, more or less. The more lemon, the better.
Whipped Cream/Cream Cheese Frosting 4 oz cream cheese cold (1/2 block) 1/4 c granulated sugar 1/2 tsp vanilla 3/4 c heavy whipping cream cold pinch of salt
Directions
Lemon Goop Whisk all ingredients together in a small saucepan, adding liquid a little at a time to avoid lumps. Bring to a boil over medium heat, stirring constantly, until thickened. Cool completely and refrigerate.
Whipped Cream/Cream Cheese Frosting In stand mixer bowl, using paddle beater, beat cream cheese until soft. Add sugar, salt, and vanilla. Beat until thoroughly mixed. Use a scraper to scrape the bottom and make sure it all mixes together well. Work fast so it stays cold. Now switch to whisk attachment and add heavy cream by drizzling it down the side of the bowl while the machine is running. Beat until very stiff peaks form.
Filling Now add the Lemon Goop in dollops while beating a little more. Don’t make butter! Refrigerate until ready to use. Same day if possible.
Lemon Chiffon Cake
Ingredients: 1 3/4 cups cake flour 1 tablespoon baking powder 1 teaspoon salt ½ cup white sugar 1/2 cup vegetable oil 6 egg yolks 1/2 c lemon juice 1/4 c water 6 egg whites 1/2 teaspoon cream of tartar 3/4 cup white sugar
FILLING/FROSTING One batch of Kara’s Lemon Cake Filling
Directions Preheat oven to 350 degrees F (175 degrees C).
In a large bowl, combine flour, baking powder, salt, and 1/2 cup sugar. Add oil, egg yolks, lemon juice, and water. Beat with an electric mixer until smooth.
In a small bowl, beat egg whites and cream of tartar until peaks form. Gradually add 3/4 cup sugar, and beat until very stiff and shiny peaks form. Fold 1/3 of the whites into the batter, then quickly fold in remaining whites until no streaks remain. Turn batter into ungreased 10-inch tube pan.
Bake at 350 degrees F (175 degrees C) for 50 minutes (a little dry. try 47?) or until a toothpick inserted in the center comes out clean. Invert cake and cool completely in pan. When cool, loosen edges and shake pan to remove cake.
To Assemble Cake: Slice COLD cake horizontally into 3 equal layers. Spread each layer with 1/3 of filling. Leave a half-inch margin so it doesn’t all squoosh out. Spread remaining filling on top.
Original recipe said to bake for 60 minutes but mine was well-done after 50. Your mileage may vary.
My beloved Uncle Scott flew out from Florida just to visit me! He came over at ten this morning and we shot the breeze for five and a half hours and it was awesome. I haven’t spent time with him since I was a child, when he was a hugely important part of my life, so I never realized how similar we are. We’re both happy with our own company and don’t care to be around other people too much. Both of us were a little nervous about visiting with each other — would we have anything to talk about? He wasn’t sure how sick I am; I wasn’t sure how red-state Jesus-y he is. But it couldn’t have been more wonderful. He’s a unix/linux guy, writes software etc., so he was pretty excited to find out that my favorite text editor is vi and that I still know my shell commands! :D
I honestly can’t believe we chatted so long and it didn’t exhaust me. That’s a vanishingly rare scenario. There are VERY few people I can spend time with, without getting the life force sucked out of me. Now I have one more for the list. And if I weren’t terminally ill, he wouldn’t have rushed out to see me (he’s my first visitor; he jumped on it as soon as he heard) and we might never have had that wonderful time together.
Tomorrow morning the Henry Tribe is coming over to meet Scott. Last night I made lemon pie filling (easy); tonight I made whipped cream/cream cheese frosting (easy) and folded the pie filling in. Light, fluffy, lemony. Tomorrow morning I’ll fill and frost the other half of my lemon chiffon cake to share with everyone. :)
And yes I’ll post the recipes if they turn out tasty!
After lots of thought, we’ve decided to adopt a calm, loving, adult cat to be an emotional support for both of us, a furry friend, a companion for Dave when I’m gone. We’re very excited! Owen seems like our kind of guy, and his foster family thinks we’d be a good fit for each other.
Henry brought Lulu over to visit with me after school and it was wonderful! We sat together for ages. I read to her, we played on our Nintendos, she brushed my hair, we chatted… it was just heavenly. And Henry whipped up a pizza for my dinner.
Here’s a little thing that’s on my mind. It’s not a great big deal, but I need to get it off my chest.
There are a few of you, a very VERY few, who are coming at me with religious stuff. Obviously, you are people who appreciate my audiobooks but don’t know me at all, because if you did you’d know that the last thing I need is to be told that I can be “saved” if I read some bit of an old book or watch a video. Saved from what? Lol. I know you mean well, I really do, but those comments will never be posted and the emails are swiftly deleted.
You don’t need to ask permission to pray for me. I won’t know or care if you do or you don’t, and positive thoughts never hurt anyone! Knock yourselves out :)
I don’t believe in any kind of afterlife, and that kind of thing just makes me feel all squirmy and icky. I’ve had a full, excellent life. Soon I will take the Long Dreamless Sleep and my molecules will go back into the universe to be recycled. People will remember me for a long time and then eventually they won’t.
Before that, I have plenty of time to visit with my dear ones and take pleasure in the life that remains for me. What could be a better way to end a life on Planet Earth?
If your religion gives you comfort, hooray! My lack of religion gives me comfort, hooray! Let’s all just mind our own business <3
I’ve had an excellent day. Henry worked from here all day, keeping me company and doing chores after work. Lovely hospice nurse Andrea came for my intake, gave us tons of helpful info. I ordered a ton of Japanese food via Ubereats — beef bento and veggie tempura for Henry and 32 California Rolls for me, to eat over the next few days. I need to graze, and they’re cool and light and nutritious. Spent too much money but oh well. :)
And then in the afternoon, Andrea called. Here’s what I just posted on mastodon:
Would you like to hear a story about american “healthcare”?
Lovely hospice nurse came today to do my intake. Excellent visit, super helpful, excited about all the resources to help my family.
A few hours later she called. Turns out that when hospice gets involved, they become my insurance provider (somehow) and they won’t cover one of my specialty drugs because it is “life extending” and not just for comfort. It costs $30,000/month and they don’t want to eat it.
So my choice is: stop taking that drug and die in a month when my supply runs out, OR not sign up for hospice care. Guess which i chose?
So now we wait until we think I will die within the month and THEN sign on for hospice care, so i can get the drugs that will help me not feel like I’m suffocating, so my family has support, so i can get personal hygiene care, etc.
Nice, huh? It’s totally Kafka-esque.
So that was fun.
But! I just remembered I am already in the Palliative Care system! Wonderful Nurse Adam comes to check on me every couple months, and he hooked me up with physical therapy, and he keeps track of all my appointments and care plans and meds, etc. He texted earlier to say that I’d be unenrolled from Palliative now, but I just called him and told him the whole story and he’ll get me re-enrolled so he can continue caring for me, and then the Palliative Care team will be able to give me more and more care as I need it. Probably not grief counseling for my family and that kind of thing, but certainly help for me with comfort meds and personal hygiene etc. So it’s all good!
Oh, to wake up after a comfortable night in my own bed with a wide-open window at my head and fresh summery air pouring in, listening to the millions of birds going bananas out there. Heaven. I’ll have my good frozen pancakes for breakfast in a few minutes.
Thank you, everyone, for the literally DOZENS of loving comments, emails, and texts. It’s overwhelming to see how much my quiet little life has touched the world and made things better. I wish I could give each of you the long, heartfelt reply that you deserve. Please know how much your words, and yourselves, mean to me <3
I’m going HOME! My ride is scheduled for noon. Hospice is taking me home in an ambulance, which is nice as I’m quite weak and I won’t need to climb up our three front steps. Henry, Dave, Jayla, and the baby are waiting for me there. My wonderful nurse Evan and his student Brennan have just taken off all my monitors and removed all my IV ports. I’ll be home in an hour, probably!
I will have a BATH, the longest deepest bath ever. I will sit on my own sofa and drink from my own water bottle. I can do my embroidery. CLEAN FRESH CLOTHES. I can squeeze the baby and watch her run around naked in the yard on this hot day. Thinking of getting UberEats to bring us Japanese food for lunch in celebration — California rolls are light and cool and not too salty, and everyone else can enjoy ramen or teriyaki or whatever. I’ve gotta watch the salt, boo. I love salt. But I hate being full of fluid so it’s ok.
Is there anything better than going home to the people who love you? Sixteen days in the hospital. Man. But that’s it. Never again, never again.
Ach, tough news. Docs predict I have mere weeks to live. I thought it would be a few months, but such is life. So. That’s how it is. It was hard to hear, but honestly after I had a good weep or two my mood changed and I feel really cheerful. I’m gonna go home tomorrow because there’s no point in staying in the hospital any more. I’m lining up a Home Hospice company.
I’m ready to stop struggling to stay alive. It has gotten so difficult. I feel bad for my loved ones of course. I’ll be having the Long Dreamless Sleep but they will miss me so much. Everyone has plenty of handmade keepsakes and quilts and my homemade audiobooks to remember me by. I can read to them FOREVER, how great is that? And there are my clever, beautiful granddaughters, one of whom has my lanky body while the other has my exact wavy red hair :D
I’ve ordered a big salad for lunch because I no longer need to worry about maximizing calories. So there.
Henry has purchased me a copy of Tears of the Kingdom so I can get stuck in right away!
