It just never gets better

We're now in the throes of dealing with Hospice and getting things set up to bring sister home to Dad's for as long as she has left. No one will say how long that is - and really it's hard to tell. Could be days. Could be months.

Her kidneys and liver are all failing - but how rapidly will that go? Jury's out.

And of course she's herself, and unhappy with any of our proposed suggestions for where to put the hospital bed and set her up. I want to say when you're the one dying, you get to choose, but at the same time, it has to work and still allow life to carry on.

Which is why she's not coming to my house. I feel guilt about it, but I can't make the boys be as quiet as she'd need, nor can I promise that I'd have the kind of time to help her as I know she wants. We're working out nursing care, but it's not the same as a family member. I know this. And yet.

So really, it seems like a family member dying can't take place without some kind of guilt. I know I did everything there was to do for Mom - but it wasn't as much as she wanted - and so there's guilt. And so it'll be the same for sister.

Whee.

This is not me trying to make her dying about me, btw, because it isn't. It's just that this is all hard. Everything is hard. And there are no perfect answers.

Insert Pithy Title Here

Sister remains in the hospital. Very little has changed as I think I remember mentioning that her liver is tanking now too? (I am too lazy to go look, but I at least thought about saying same. If that counts at all.) There's a liver stone. They were unable to get through her stomach to remove it previously. And the attempt kicked off the bleeding again (from where? no one knows.)

Tomorrow, they're going to go in and try to force the stomach-to-intestine opening wider so their equipment can get through. The day after, if that works, they'll go after the liver stone as it's not resolving on its own. If they can get it taken care of, then she can come home and go on hospice.

Because that's where we are.

At this point, we're just praying for it the end to be quick and as painless as possible.

How to Speed Up a Hospital

In our continuing saga...

Last night, sister called, very grumpy, because they hadn't done the endoscopy yesterday and they weren't sure if they could get to it today and she's feeling very defeated (but why? /s) and said, "I just want to go home and accept that I throw everything up. I'll figure out how to get nutrition in small doses somehow."

And then she told the nurse to let the doc know that she wanted to be discharged.

Miraculously, they were able to do her endoscopy this morning. And will do a few more GI tests today.

And like I realize that they're busy and she's not actively dying anymore, so could be in the back of the line, but also she's been in the hospital basically since the 14th and really, who wouldn't want to go home.

For now, the first endoscopy showed no obstructions, but they did suction off 2L of liquid that was just hanging out in her stomach. (This is abnormal, in case you didn't know.) So yay that something was amiss? But there were no magical answers forthcoming.

Bleh.

But Wait! There's More!

When we last met, the medical drama with my sister was planned surgery for stents on Friday. A simple procedure.

Routine, even.

In normal cases (i.e. not the first time for a person), it's basically outpatient. Fifteen, twenty minutes to slip in the stents, then once you're awake, home you go.

But we don't do things the normal way here in Sleepy-land.

Around 3:30, I get a call from the hospital number. I think to myself, well good, they're finished and calling to let me know.

But hahahahaaa no. The urologist on the other end says things are not going well and I'll excuse her as these aren't the types of calls she usually makes and it would probably be good if me and Dad came up there.

Turns out, they got the left stent in, everything was looking well placed and she was getting ready to remove the insertion apparatus to prep for the right side when my sister started gushing blood.

Like two transfusions amounts.

I drop everything, hop in the car, and zip down to grab Dad and head to the hospital. We check in in the waiting area.

Over the next four hours, they call us four times with updates along the lines of:

They've rushed her off to an emergency angiogram to try and find the site of bleeding and stop it in some way and...they can't find anything?

But it's still gushing, although maybe slightly less?

Seems to be slowing, but not stopping. So they're going to put her in ICU and monitor. Well no, not ICU, intermediate care as the bleeding has slowed enough that they think they can manage it just by putting in more than is coming out.

We finally get to see her in a room around 9. Pale doesn't begin to describe (duh) but she's alive and sort of kicking?

I take Dad home, then go back so I can spend the night there with her.

If you've ever wondered about sleeping in a hospital, the short answer is you just don't. But I did manage to doze a little.

Saturday, all the doctors come and go with various updates. The bleeding seems to be enough of a slowing trickle that maybe whatever it was that was gushing has healed itself. Of course, she's still vomiting everything she ingests. Literally can't keep down clear liquids. All meds have to be IV etc.

So they've called in GI and maybe there's gastroparesis in play as well? When she's more stable, let's do some tests for that.

Long story short (too late!), she's still there, but now moved to a "regular" room. The plan is an endoscopy today. Maybe tomorrow, depending on schedule. Which means nothing by mouth until it's over, but hey, it's not like she can keep anything down anyway. We'll worry about malnutrition later, I guess.

And there's the issue of still needing the stent in her right kidney because, of course, they're still swollen and backflowing and just generally failing.

The thing of it is, people keep asking me how I am. And I understand the intent, but honestly? I don't know. I don't know how I am. I'm putting one foot in front of the other and trying to handle whatever ball is tossed my way at the time, hoping I catch the fragile ones and drop the rubber ones. There's a tiny part of my brain devoted to hysterical, unhinged laughing because it just can't cope. But so far, at least, that's all on the inside, and I can reassure my kids that their aunt is fine. I can support my Dad who is cracking in ways he didn't even when we lost Mom. And I'm grateful for a hubby who is content to have me just lean on him and not talk.

Because, all evidence to the contrary, deep down I have no words.

The Revolving Door

So yeah. 

Sunday evening, sister called from her friend's house about 45 minutes south of here to let me know she was back from their "vacation" to the beach, she hadn't been able to keep anything down since Tuesday and her car had a flat tire that wouldn't reinflate and also there was apparently no spare.

So I went down to fetch her and take her straight to the ER that's about an hour north of where we live.

It's a good thing I like to drive.

I don't like driving as much when the person in the passenger seat is vomiting. Especially as I'm a sympathetic vomiter. So picture, if you will, zooming up 95, windows down to air out the smell, heater on full blast to try and keep everyone from freezing as it was somewhere around 20 degrees outside, trying not to hurl because of the noises and smells from beside you.

Good times. Good times.

Five hours in the ER later, she was admitted and I headed home.

Monday, they decide she needs stents in her kidneys as this all appears to be related to kidney damage/blockage (possibly from her radiation treatment, but who really knows) and it's backing up and filling her stomach with bile. Que the vomit.

They also decide that if they can stabilize her and get her to a point where she can eat, they can send her home and do the surgery next week. So that's the plan.

Tuesday, I head up to grab her and take her home around 3. (After the snow and ice and all that joy - but the main roads were basically fine and our littler roads weren't terrible.) Which hospitals being hospitals, actually meant I got home around 9pm.

Yesterday? Yesterday I was taking her back to the ER at noon. Because while she'd managed 24 hours of no vomit and keeping food down there, she made it almost to midnight before it started again when she was home.

So now they've decided the stents actually are an emergency, so they'll squeeze her into today's surgical schedule. Which means, if all goes well, I should be toting her home again tomorrow evening.

Of course stents being what they are, she'll have to lather/rinse/repeat the surgery every 3-4 months from now until eternity (which given the cancer, is at least not all that far off. Hush. The dark humor helps me cope.) She's not excited about it. She didn't want to do the stents, honestly, but I convinced her that dying b/c of kidney failure in this particular method wasn't going to be a painless and easy way to go.

Not that cancer is a lot better, but at least with that there's hospice and good drugs so you can sleep til you die.

Or so runs the theory. 

(And maybe they'd do that with the kidney failure route too, but honestly? Why risk it with what is essentially an easy "surgery" that doesn't have any incisions involved?)

So yeah. How's your week been?

Where were we, oh that's right.*

Well, I was wrong, it seems and they will, in fact, kick someone out of a phase 1 clinical trial. Sister is officially removed owing to "too much progression." I don't believe she has the PET results yet, but at the meeting with her oncologist, he broke that news. He also said he doesn't think she'll die this year.

Of course, he thought the chemo she did whenever this all started had a good chance of "cure." So really, medicine is all guessing and positivity.

We'll see what happens. All I know right now, is that she has not kept much of anything down for the past four days? Maybe five. Her theory is that it's abdominal pain related (as she is in distinct and overwhelming pain in her abdomen.) 

Yay.

In happier (?) news, the boys all went camping this weekend. They were to have gone Friday through today, but owing to potential flooding at the campsite Friday night, they went ahead and waited until Saturday (yesterday) to head out. There was to be a 10 mile hike and then the overnight.

All I know is that it was dang cold last night and I'm glad I wasn't shivering in a tent. I don't understand the allure of camping on the best of days, and this was decidedly not the best of days.

When they get home, I'm sure they'll all say it was great, but yeah. I'm grateful that I do not have to go along on these things.

I spent my day of silence in the house knocking out quite a few words on the book that I am woefully behind on. (Which since I indie pub, it's not as if there's a true deadline, but I had my own deadlines and have missed them and it's aggravating. So there's that.)

And now, speaking of camping, I guess I'll take myself off to church as said boys just texted they are only now leaving the site. I had thought they'd be back so we could go together. Alas, no.

*spot the quote

Ups and Downs

My sister had a PET scan today. She struggled with the contrast this time, losing most of it when it came back up. Her kidney function is so low they wouldn't do it via IV. So I wonder how much help the PET scan will actually be.

The kidney function is concerning. She'll see a specialist there at the end of the month, but she's down to right around or just under 30%, so the failure is pretty bad and increasing. She's in constant abdominal pain that her strong pain meds don't really touch - her oncologist says the pain is definitely related to her kidneys.

She's still in the clinical trial right now, but she might drop out. She says she isnt' likely to be kicked out because in a phase 1 they want all the data they can get. And she's more and more tired of playing guinea pig.

In all, she sounds as though she has given up and as understandable as it is, it makes the reality of her dying sink in just a bit more and...I am not ready.

I don't think it's possible to be ready to lose a sister.

With Mom, it was somewhat easier because of her age and how long she fought and in many ways it just felt better. I probably can't quantify that. And I know I had moments where I prayed for her to go quickly because it was so clear that she wanted to and was suffering.

I don't like it.

I guess maybe you're not supposed to.

Happy New Year!

We had a laid-back New Year's Eve.

Laid-back seems to be the theme of these days, and honestly? I'm good with it.

Church in the morning was bittersweet. It was the final sermon of our current pastor, who is retiring to go be, effectively, an itinerant pastor--filling in here and there for a week or two at a time as needed. His sermons were a huge part of what we love about our church, and honestly, with the rest of the shenanigans that went on there in 2022-2023, him leaving feels like that final straw.

Of course, eldest is still very involved and most of his friend group is there, so I doubt heavily that we'll actually look for another place. But church is no longer a place I look forward to going, and that is sad.

The new pastor is fine. He hasn't been here long - he came as the "outreach" pastor maybe two years ago? Three? Something like that. (For all I know, it's been five and I just have no concept of time, but I feel like it was toward the end of covid, so 2 or 3 feels right.) The times he's preached have been...fine. But he's young and his sermons reflect that. They aren't deep and thought provoking. And maybe with time he'll grow into a fraction of what the exiting pastor was, but honestly? I'll be surprised if he does. Pleasantly surprised, but still surprised.

Of course, that means we'll need to hire a new outreach pastor to do...whatever it is we pay that person to do. From my perspective, that seems to be greet people on Sunday morning, but maybe there's more to it than that.

Anyway, I digress.

We headed to friends' around 7 and spent until about 10, when it was clear youngest needed to get to bed, hanging out and chatting. It was lovely, even if the group was about half of what it "should" have been. One couple took the opportunity to say they weren't going to be continuing with our small group on Sunday nights anymore but hoped to still do the hangouts. I told hubby in the car on the way home that I'd called it (I had) and he laughed. Because he'd said I was being pessimistic. And sure, I was. But I'd venture to say pessimism is rarely wrong.

Still, at home, we managed to make it to 12:02, at which point I called it and we headed to bed.

And now, we embark on 2024 and whatever it is God has in store for us in the days, weeks, and months ahead.