The funny part was then watching the nurse and orderly try to figure out the fancy bed he's in. Apparently, it is a brand new piece of equipment, and I don't think they did any formal training for anyone on how to use it. Not only was a little comical watching them try to figure it out on their own, but then another nurse came in to explain and demonstrate, with Biff as the demonstration patient while she showed how the bed can do things the old beds couldn't, such as tilt the bed from side to side... Biff was laughing his ass off. Also heard the story of the first time the nurse who was demonstrating accidently used the emergency function, which flattens the bed in one fell swoop, bang! Bet that was a shock to the poor patient in that bed at that moment! (But, seriously, I can't believe the company who sold that bed didn't come in to do formal training sessions for everyone - but I think Covid may have made those kinds of things less common... Maybe?)
Before I had arrived, Biff and I had talked on the phone. He told me the Speech Language Pathology (SLP) team had been in to check his swallowing out, and they had decided he wasn't in good enough shape to do the Barium swallow test yet - so, tomorrow (or today, June 1) hopefully? Because of this, they would not be moving him out of the PCU yesterday.
But, in our conversation with the doctor after I got there, who we had met last Friday after Biff had been moved out of ICU the first time, we were advised that they do intend to move him out of PCU to a general medical bed. The first step of that process was shifting the managing doctor back to her, which was why she was up talking to us. Actual time for the transfer will depend on bed availability, and he may not end up back in the same unit he was before. But timing is completely up in the air, so we'll see when that happens.
I explained to her at length my frustrations with the delay in him getting actual care the last time they moved him out of ICU, so hopefully she can help make sure that doesn't happen again.
She also advised that his White Blood Cell count continues to get better (although she didn't have the latest number for me). He's still on the Neupogen course to support that.
She advised that the SLP team had decided he could try to drink and eat soft, pureed foods again, if he felt he could tolerate it. He would need to swallow with his chin in a tucked down position they were making him do the day before when they only allowed him to swallow medications ("chin down, chin down!"), but at least he can try when he feels he can.
And, because his White Blood Cell count is better, they decided to go ahead with a feeding tube through his nose. She advised that most people tolerate it fine after getting used to it for about a half an hour. If it isn't tolerable for him, they can do intraveneous nutrition, but it turns out that is considered more dangerous - more likely to create infection and cause liver issues, because the nutrition doesn't go through the GI process in the body but goes straight to the liver. But a lot of people do use it, if needed.
She advised that the mouth sores (official word for that is "mucositis" - had never heard that before!) is looking better, even if it isn't necessarily feeling better just yet, so they feel that the rinse & spit medications are working, slowly, sure, but working. And, truth is, he is obviously feeling a little less pain. Of course, yesterday, they only allowed him ice chips and medications, so he wasn't having to deal with the pain as much either.
She wasn't sure about the Barium Swallow test (and Biff didn't ask them himself today), so I'll try to follow up on that when I get there.
I sent a message to the Oncologist via the online system while I was there yesterday, but I still haven't heard back from him. Hopefully I will today.
Around 3pm, the nurse came to put in the feeding tube. I was asked to leave the room. About a half hour later, I went back to check on him, and he was sitting quietly with the tube in his nose, and told me they were waiting for xray to come confirm the positioning before taping it down. I left again to let him rest (and, the room was full of stuff from the procedure, so all Biff's stuff from the table was piled on the guest chair, with nowhere else for it to go, and I just couldn't stand around).
As it was, that whole thing was a long stretch. I came and went a few times. Around 4:20pm, they had to pull the tube part way out again and push it back, attempting to get the right position. It is the smallest tube they use, and very flexible, so it catches on stuff inside and curls back... They had to do the reposition thing once more. I was outside the room at that point, and I could hear him moaning, but they finally got it in a good position, and after a little wait, they taped it down.
So, now the poor guy has tubes attached to both arms, his port on his chest, monitors attached all over and to a finger, and the catheter, and his nose:
In his high-tech bed...
Although the feeding tube isn't entirely comfortable, he tolerated it fine (once it was settled in place).
They also gave him a new device (I didn't write down what he said they called it):
He's supposed to spray (shoot?) it into his mouth 10 times an hour, and it forces the mucus in his lungs to loosen up and come up - and then he uses his handy suction tube to suck that mucus out:
Yep, pretty gross. However, the mucus was mostly white, just a slight tinge of pink, which we both think means his mouth was bleeding less, which has to be a good thing, right? Honestly, the day before, the stuff he was sucking out with that tube was bright red. This is a definite improvment.
Last thing I logged in my notebook yesterday, was his blood sugar check around 5pm or so: 141 - which was not a concern. They have given him insulin a couple times when the count has gone higher (from the sugar in the fluids). I'm glad to know they are keeping a close eye on that. I believe they aren't giving him his regular diabetes meds right now (he's been off insulin for years but still has meds to manage his diabetes), so it eases my mind to know they are monitoring that regularly and handling it!
I had a video appointment at 7pm, so I had to head out before 6pm (rush hour traffic). He was comfortable and resting when I departed.
He called me about 9:15pm last night to say goodnight. We ended up talking for almost an hour. It was nice to end the day that way. I miss having my best friend around to talk to, no interruptions.
And it was helpful for me last night in particular. If you want to read more on that, you can click through the "read more" thing down below.
But before I go there, I've already spoken to him a couple times this morning. He woke up during the night to discover he was pulling the feeding tube out of his nose - it was almost all out when he realized what he was doing. Freaked him out a little.
They've already got it back in, waiting for xray confirmation. The doctor advised that this happens all the time. Such a bummer, but mostly he was embarrassed, so I hope the doctor helped him feel better about that. They had given him his first dose of crushed meds via the tube before we spoke last night, which went well. Much easier than him swallowing that stuff. And they expect the dietician to see him once the tube is taped down again, position confirmed, so he should, finally, start getting some good nutrition into his system!!
Okay, although I have the easy part in this situation, it still isn't always easy. I feel like I need to share at least some of what the "caretaker" goes through, too.
First, I was rushed again getting out the door yesterday. And then I had to park farther away than I ever have before (Wednesdays tend to be a busy day at the facility, and I believe it was especially so because of the holiday weekend - treatments that needed to be caught up from Monday), so the hike in took longer than usual. I mean, I love getting my steps in, but sometimes... Yesterday was the second day I dragged a little suitcase in instead of my backpack and a tote. Just was too tired to keep carrying the backpack all the time. The little suitcase is working out better (although I feel a little goofy dragging it with me).
So, I arrive at his room to find him sitting in the only chair in the room, and the doctor is there talking to him. I couldn't sit down or get settled, just pulled out my notebook and started taking notes, checking my questions to ask, while sweating and slightly breathless. Not a great start. I felt off-balance and a little frantic, and I never really calmed down the rest of the day.
And, the main nurse handling him post-holiday weekend does not make me feel welcome. She's an older woman, and very brusque, businesslike. Biff got teary explaining to me that she handles all the painful procedures herself, taking on the difficulty of handling a patient in pain, and I do appreciate that, but she just makes me feel like I'm an annoyance and in the way.
But, better competent and unfriendly than friendly and incompetent, so...
And, oh boy, did I feel offended getting kicked out of the room when she arrived to put in the feeding tube! She suggested I "sit outside" - to which I replied, "Oh, is there someplace to sit?" - because there isn't! And I guess she was going to go get a chair or something, but I got huffy and just said don't worry about it and walked out with just my phone.
I wandered my way out of the whole unit, out to the main hall. Stood doing some texting leaning against a wall for a bit, some pacing, and eventually walked down the hall on the opposite side of the floor and found the Surgical Waiting Room. Which I'd been in before (I've been all over this facility over the years), and it was empty, so I plopped down there, and texted family to bitch and moan.
I really just didn't have any patience left, and I was offended that she didn't think I would handle seeing Biff go through a painful procedure. Seriously, does she not understand what I've been witnessing and dealing with for the last six months!!!
I feel kinda silly about it now, but I was emotionally raw all day yesterday, so I was not handling things with the grace I would like to always present to the world. Ah well.
And, I had the added stress of my talk therapy video appointment at 7pm. I could have tried to find a safe, private spot to do it somewhere at the hospital, but there really isn't such a spot for a guest that I've ever seen. That waiting room may have been empty when I was there, but you can't close, let alone lock a door, so anyone could walk in at any moment. I was at a point where I was ready to blow it off, but Biff encouraged me to leave early enough to do it. (He worries about me in all this and knows the therapy is helpful - which breaks my heart: hate that he is worrying about me. He's got enough to deal with, but he's always been my rock, and he knows me so well...)
So, I headed out for the long hike back to the car, getting there a couple minutes after 6pm. I checked Google Maps and that predicted a 45 minute drive in the current traffic, so I texted the therapist to warn him I might not make it.
Crawled home in the traffic, pulling into the driveway just before 7pm. Grab my crap out of the car, step over a box on the front step, unlock the door, squeeze in to keep the dogs from dashing out, and went straight to the bathroom to pee (it was urgent!). While I'm in the bathroom, the therapist texts to ask how I'm doing and offering to reschedule to Friday at 2pm...
You know what, I'm going to copy in the email I sent to Biff about my entire experience after I got home:
I text back that I'm not sure what to do, just got home and had to go bathroom, dogs are frantic wanting to be fed... but maybe I should just be a little late. Okay to reschedule but who knows if I'll be able to do Friday at 2pm under the circumstances.He texts back let's just reschedule to Friday. "...Rest. And please confirm." So I text back "okay" - already putting dog dinner together...So, I get the box from the porch. It's from Urban Stems but doesn't say who sent it. Open it up. I'm assuming someone sent flowers or something for you, but finally realized there is a message on the card (along with a coupon and an ad, of course) but card is not signed, so still don't know who sent it. Then realize it says Happy birthday, so I figure it's the delayed present from Paton. Text her and confirm. She texts back about the jade being good luck and she has a few jade plants and so on...So sweet...I'm about to microwave myself a Factor meal, and I get another text. But this one is from the pharmacy, reminding me I have prescriptions to pick up, and please pick them up today.Pissed me off, but I go ahead and get in the car and go get the fucking prescriptions. (Managed to grab Snookie before she escaped out the door - love the feeling that my dogs want to run away, which I know they don't really, but I'm in a mood.) Consider getting some food at the sushi place in that Albertsons strip mall but decide to stop at KFC instead. But there was no parking anywhere near the KFC - guess the fitness place and/or the new bar have a lot of patrons!?!So, I decide, fuck it, I'll go home and cook the thing. Then I'm coming up on Food For Less and decide to get some Wing Stop - I can give some to the dogs and have celery and carrots... I go in, no one in line, order immediately, but he asks me for a name. I ask how long it will take, and he says about 20 minutes! So I say I can't wait and leave. I was in such an emotional state, I knew I couldn't handle waiting there that long - and the dogs were waiting for attention...Cry in the car a minute or so, then decide to go to Taco Bell. Quick, as usual - only one car ahead of me. I'm even able to order a side of chicken I can give to the dogs as a treat.I get home, with food/drink, prescriptions, key out to open the door, get in, blocking the dogs from escape, and my Cravings box starts to fall. I catch it, but the Nacho Fries fall all over the floor, which Snookie immediately starts scarfing up.That's the moment I lost myself, laughing and crying simultaneously...Didn't let it go on too long, picked up most of the fries, sat myself down with food but had to write this to you first. Decided to email instead of text or call, in case you're sleeping.I'm over this day already!I hope you are comfortable and doing okay - hell, I hope you are sleeping or watching TV or playing a game...I miss you so much,TannaOkay, going to eat now. XOXO
Well, I edited that a little bit. And "Tanna" is a nickname Biff uses for me. And Paton is our niece (the best!).
Anyway, when he called later, I was calm, had eaten, just hanging with the dogs, watching TV. And he hadn't seen the email, so I ended up telling him the whole story, making him laugh, making me laugh, getting it off my chest. Having that communication one has with a best pal, a life partner of over 4 decades. It was more helpful than therapy probably would have been, you know?
On thing he said that made me laugh, is the whole laughing/crying simultaneously thing reminded him of my behavior at a fundraiser I co-hosted about 20 years ago (I cannot believe it was 20 years ago!!!) for a show I was acting in and producing called Laughing Wild. A 2-person show, my partner in that endeavor, Robert Briscoe Evans ("Bob"), were in a bit of a state. And a little drunk. We'd had a big fundraiser with a celebrity at a Hollywood venue fall through and had scrambled to put together this much smaller fundraising party on New Year's Eve.
And NO ONE came. Well, ultimately, there were a few, but it was surreal. Tons of food and an empty party. And everything started to make us laugh, somewhat hysterically. Like when the confetti was dropped from the ceiling and just plopped on my mom's head (Bless her for being there!)... One of my favorite moments was when Bob leaned over his wife after three guys who come to set up our sound and then also paid to attend passed by - he drunkenly said, "They're our only paying guests: we should blow them." Got all of us laughing - and with me, it was laughing until I cried! Biff, of course, was there and laughing along. Amazing that he heard a similar "hysteria" when I told the story last night.
(FYI, Bob is one of our dearest friends, and his wife, Sherry. Bob and Sherry even helped us pull off our surprise wedding on Christmas Day 2018 - Bob officiated! And Sherry had cooked a lot of the amazing food for that fundraiser!)
In many ways, yesterday wasn't that bad. I just had hit a wall and couldn't catch my breath the whole day. Hoping I'll manage a little more grace today, a little less hysteria. (Surprising how it helps to write it all down.)
If you've read this far, spare a thought for the caretakers of those who are sick/injuried/incapacitated in any way. The folks with the health/issues are the priority, and they are definitely the ones dealing with the worst of everything. But the caretakers share a brutal experience, the stress is unrelenting, and emotions sometimes get the best of us. I feel very supported by my family and friends, and I know they understand and love me. Encourage me, remind me to take care of myself. It's overwhelming and scary. And we just do the best we can, do what we gotta do, and keep moving forward, trying our hardest to do right by our loved one who is in pain/struggling.
My brother-in-law called me "Tenacious T" yesterday. What a nice thing to say, and it helped, too!
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