Doing much better...

Couldn't manage an update yesterday, but he was doing much better. I spoke to him first thing in the morning, and he'd slept well and was feeling a lot better. The day before, when they put him back in the ICU/PCU ("PCU" = Progressive Care Unit, a step below ICU), was a brutal day.

But back to yesterday (with some "day before" sprinkled in for context)...

First thing in the morning, I had some stuff to do with the GoFundMe account a friend and colleague of his started within hours of learning about the current situation. He'd sent Biff a short script to consider, and Biff had to let him know why he could not. The response has been overwhelming, and although I'm extremely grateful, I have to admit I feel weird about it. But I won't lie and suggest we couldn't use some extra money for all the expenses, medical bills (although his insurance is generally really good, our share of costs adds up when there is so much going on - we have no idea what he'll be charged for ICU stays yet), so I'm trying to just be practical. If you would like to share the campaign or read more about it (but please don't feel obligated to contribute!!), here's the link:

Friends of Biff GoFundMe

He also asked me to make up a quick little sign to show his support for the WGA Strike, so we could take a picture, and he could post. Here's how that came out:

We did a good job of hiding the gnarly bruise on his chin from the fall last Thursday. Here's a picture of that. You can also get a sense of how his mouth sores leave bloody mucus in his mouth - he had a suction tube handy all day yesterday to pull that yucky stuff out whenever he felt the need:

So, I had those "assignments" and taking a shower before I could head back to the hospital. He made a big point of insisting I must take a shower first (I'd brought it up & he just kept teasing me "Please take a shower!" - that's my guy!).

But, of course, hurrying to get myself ready when my mind is racing and scrambled trying to keep up with things - and life just loves to play its little jokes - a couple "funny" things happened. First, three of our smoke alarms went off while I was in the shower. I leave the door open because I get too hot, and the steam has set off an alarm before... But THREE!!! As soon as I could get out of the shower, I got the stepping stool to check the hall alarm, but it wasn't that one. The alarms had gone off in the two main bedrooms and Biff's office at the end of the hall! Poor dogs didn't know what the hell was going on. Oh, and I couldn't find my phone for a frantic 10 minutes or so as I was trying to head out the door... Finally found it. In my back pocket... Yeesh. Think I'd gotten a little wound up. 😜

Regardless, it was great to get to the hospital and find him in much better spirits. Where he'd barely been able to keep his eyes open the day before, yesterday he was awake, alert, and chatty! 

The doctors had already done their rounds before I got there, so initially Biff explained a couple things. One, they were still concerned about his urine output (or lack thereof) and that they weren't leaving the catheter in due to his low White Blood Cell count. Two, they are going to do a PGx test (he handed me a pamphlet), which is a genetics test to help them figure out what may be causing the severe reaction he's had to the chemo and decide which chemo options may do better. Not sure how quickly we'll get those results - the pamphlet said it could take up to two weeks, but Biff is under the impression that's just when it'll get posted to his records. He believes he and Oncology will be notified sooner than that. 

I did not have a chance to talk to the Oncology doctor yesterday, although the doctor on Biff's case yesterday said she'd send him a note that I was asking. Not sure she remembered to do that - our Oncologist is usually pretty quick about getting back to us, and I didn't hear yesterday. Of course, it was first day back after a holiday weekend, and I'm sure he was swamped. I'm going to try sending him a note today. If nothing else, I want to find out the immediate plans for going forward with the next chemo treatment scheduled for Monday.

I did have a great update from the doctor covering Biff yesterday though. She explained a lot:

1. His respiration is doing much better, and they had shifted him to a lower flow of oxygen. 

They did do another "breathing treatment" yesterday, which they had also done the day before. Here's a little video of that I shot the day before:

Freaky...

 2. They increased his pain medication regimen, giving him Dilaudin (or Dilaudid - not sure I have the spelling correct) every four hours. However, this medication can contribute to urine retention, so they were proceeding with caution. Since he did not complain of pain during the six or so hours I was there, I'm not sure they gave him any - although I did not ask exactly what each medication they gave him was as they were administered. I asked a lot of questions yesterday and sometimes felt like I was getting in the way, so let it be. Maybe that was wrong, but I try to find a balance between demanding and befriending, you know? 

3. They had him on a broad-spectrum antibiotic, but they had narrowed that down to one antibiotic. They were still looking for bacteria in his lungs, but the UTI (urinary tract infection) was diagnosed, so working on that!

4. He was on Day 2 of a 5-day course of Neupogen (they spelled it for me), which is basically synthetic white blood cells. The doctor explained that a normal white blood cell count is between 4 - 11, and that should increase to 14 or 15 if they are sick and fighting infection. Biff's count was .9 (point 9)!!!!! Obviously way too low, so working on that!!!

The day before yesterday (the really bad day), they had him continuously hooked to a Condom Catheter (external catheter), but that didn't produce any urine output. So, twice during the day while I was there, they'd had to come in, remove the Condom Catheter (which, especially due to the nasty rash down there, was extremely painful), insert a Urinary Catheter (even more painful), wait to get all the urine backed up in his bladder out, then remove the Urinary Catheter (pain again), and put the Condom Catheter back in place (also painful)... It was pretty horrible, and so painful for him. But he wasn't in a condition that allowed them to leave the Urinary Catheter in place continuously - I learned the next day (yesterday) that was due to the low white blood cell count.

Less than an hour after I first spoke with the doctor about all this yesterday, she came back to advise that the latest test showed his white blood cell count had risen to 2.3, which they considered a dramatic improvement, and were going to proceed with putting a Foley Catheter in. The Foley is a more flexible tube and more comfortable, apparently, than the Urinary Catheter. It took a few hours before they got that installed, but it's all set. It was a painful "application," and initially was not comfortable, but he did get used to it, as they had promised. And urine definitely flowed!

Another indication Biff was feeling better yesterday than the day before: he made me leave the room while they installed the new catheter! He didn't even remember I'd been there, literally holding his hand, through the two torture sessions the day before - but now he "didn't want me to get in the way." Yeah, okay. (Funny story though: while I waited outside the room, I had a conversation with the Assistant Nurse, who asked if we were married, etc. She also asked if I worked in medicine!!!?!?! I had to laugh and explained, no, I just take a lot of notes and ask a lot of questions. LOL)

5. They also have him on anti-seizure medications as a preventative due to the fall - as I understand it, this is pretty standard with someone who's had a head injury, even when they aren't concerned about urgent surgical needs, especially if they are still dealing with other issues.

6. They currently didn't feel he was safe to swallow much of anything. They now had him only allowed to take an ice chip on his own, not even a sip of water. And no food at all, not allowed to even try pureed/soft food. They were having him swallow some of his regular meds, crushed into apple sauce (apparently apple sauce or something a little thicker is actually easier to swallow than straight liquid!?!), and then he was still doing rinse/spit medications, which burn and cause his mouth to bleed. For the first time yesterday, they had a suction tube with him in the bed, that he used whenever he felt the need. Which got pretty gross and had to be replaced periodically. Ugh. But better than him trying to spit out or wipe out his mouth when the bloody mucus got to be too much.

She advised that they were planning to do a Barium Swallow test (he'd drink the Barium in front of x-ray so they could see his swallow function) today. Once they'd done that test, they'd make a decision about the various feeding tube options, possibly even intravenous nutrition instead. A whole SLP team had come to consult before I got there (Swallow Language Pathology).

Jumping ahead to today, Biff called to advise the SLP team was back and checked him out, and they've decided he's not ready for the Barium test yet. Hopefully tomorrow. For now, however, that means he'll definitely not be moved out of the ICU/PCU today, which had been a possibility.

They generally believe his GI system is okay, and they really hope they won't need to go to the feeding tube at all. I'll find out more about this when I get back to the hospital in a little bit, and I can talk to the doctor for a full update.

As anticipated, a whole lot more information started flowing after the holiday weekend was over. There's even more, but the important stuff is covered above.

Biff texted me about 7:15am to let me know he was awake and doing okay. A couple text exchanges. He said he'd slept pretty well. 

Then he called about 8:15am to chat and advised they'd told him they thought he would be moved out of ICU/PCU today! That got me rushing, but I had to take care of some stuff at home before I could head back to the hospital...

Then he called again at about 9:20am, and he wasn't doing as well now. The medications were really hurting his mouth. And the SLP team had come back, forcing him to do some swallowing for them, and ultimately deciding he isn't ready for the Barium test or to move out of the ICU/PCU today after all. 

So he was going to try to just rest for a bit. Told me not to rush getting there.

Decided I'd get this update written and posted before I head down there. Gives me a little more to hang with the dogs, who are definitely missing having Biff home and not happy having me gone so much either. And get a couple other things done here at the house - maybe even get over to the pharmacy to pick up a couple prescriptions for me, although I still have a few days left before I'm out, so we'll see. I'll also get to hold off on the drive until after the rush hour traffic clears.

I'll try to post another update later today, but it might be tomorrow before I can manage it. I'm unbelievably exhausted by the time I get home. The stress takes a toll. And time is just weird for me: stretches and shrinks. Hard for me to get a firm grasp, hard to organize a schedule. Hell, it's just a hard time all around. 

Thanks again to everyone for all the love and support. He doesn't have the energy to reply to all comments and texts and things right now, but he's amazed by the outpouring on social media and the GoFundMe campaign. Yesterday, he'd check Instagram and show me how many "Hearts" had tallied since he last looked. 100! He'd check them out, clear the count, and it would be back up at 100 or something the next time he looked! Amazing. (And the plan is to make responding a project once he's in better shape!)

We also got a chance to watch the first few episodes of the new season of I Think You Should Leave with Tim Robinson together on my laptop. His stuff wasn't in the episodes we saw. I made sure he could watch more on his tablet before I left last night, but I'm not sure he had the energy. He was definitely fading a bit when I left, so I imagine he mostly slept. So, maybe we'll watch more today!

And the battle continues. He is fighting hard to recover, to be able to move forward. And I feel like things are finally starting to head that direction. Onward we go.

(Apologies - I know I should edit this down more, but I just don't have the time today.)

Back in ICU...

Biff is back in ICU (with PCU care which they consider one step down). Apparently around midnight his heart rate and temperature spiked, and he was mentally altered/confused. They called Rapid Response and he was moved upstairs. It was considered an aspiration event (fluid getting into lungs), which is not uncommon for patients who've had throat surgery, radiation, chemo...

They did another CT scan on his head and that's normal.

Has IVs attached to both arms and in the port. Has a suction tube to use whenever he wants. Giving him inhalers to try to help with the congestion.

I did not find out anything until he sent me an email at 11:15am with only a subject line saying they'd moved him to 5 west. He did not respond to text I immediately sent, did not answer phone when I tried calling. I called number for desk in unit he was in yesterday and got his new location info and was transferred to new nurse who explained briefly. I then got my shit together and headed to the hospital. Got here about 12:30pm.

He's been woozy, remembers almost nothing about all of it, but isn't "mentally altered" now. He dozes in and out constantly through.

I learned all of above detail from doctor I was able to speak to right away.

They will be testing his swallow function. Keeping him on only fluids for now. He is weak. Checks phone, falls asleep...

Doctor says they don't think he'll stay in this unit long, maybe a day or two, then he'll be transferred back downstairs.

Basically, we need to get him through this crisis before we get fully back to where we were yesterday. Expect there will be much more specific news tomorrow, when holiday weekend is finally over.

I'm super upset no one called me at any point to let me know what was going on. Sadly, I don't think they expect loved ones to always be intimately involved here are the VA... I don't know.

Will post more news when I can, as best I'm able.

Out of ICU but still in hospital...

They moved him out of the ICU early yesterday. They are still doing basic Neuro checks to make sure everything remains good, but they are pretty confident there is no danger from the bleeding in his bonked head.

He was moved to a private room! View isn't great, but there were no windows in his room in the ICU! He checks his phone for a few minutes, on and off, dozes on and off...

So the main focus shifts back to the pain in his mouth, the rash, and getting fluids and nutrition into him. There was a lot of waiting around after the move, long stretches between visits from a couple doctors, nurse checks, etc. Way too long to get him hooked back up to fluids and get him pain meds, some kind of disconnect with things in the transfer that I still don't understand, but I didn't leave until he was covered on both those needs (it was another long day).

I'll be heading back to hospital today, armed with a list of things Biff has asked me to bring and a list of things to discuss about care going forward. Will do my best to post an update again later today, but no later than tomorrow!

So happy the bonk on the head didn't end up requiring surgery!

Onward we go...

Not going too well...

Biff was admitted to the ICU last night. He had nasty fall yesterday morning (I was at laundromat - long story for another time), some bleeding that had stopped by time I got home - he was up and conscious ("I'm fine!"). We already had an appointment with Oncologist at the nearby facility, so we headed there. They don't have emergency services at that facility, but said we should go to Oncology appointment, then see general medical team after. However, Oncologist said we should go to ER at the other facility directly and be admitted for treatment for all the side effects problems and get thoroughly checked out for the fall he'd taken.

Long wait in ER, another long story for another time. CT scan of his head showed some bleeding (they were not expecting there would be based on his physical behavior - no signs of any problems), so, with everything, they admitted him to ICU... 2nd CT scan showed no changes and "looks good" so not planning surgery after all.

It's good that they are monitoring and taking care of all the problems. He'd gotten to a point where he could barely drink or eat and was in constant pain from side effects (aside from the fall concerns - he probably fell due to dehydration).

I've spoken to him briefly this morning. The pain in mouth and rash are "worse today than yesterday" and he's in a lot of pain. Doctors are working out new plan. Again, I'll be heading there shortly and will update again as soon as I can. 💔🤬🙏❤️

A little trip to the ER...

First thing: he's okay! Not feeling great, but he's okay. His resilience continues to amaze me.

So, yeah, we had to take Biff to Emergency today (Saturday, May 20th). We took him to Urgent Care first - not a life-threatening situation - but they insisted we needed to go to the ER instead. I believe his age and the chemo were just beyond their usual scope. (Pretty sure everyone we saw in the waiting room at Urgent Care was under 30.)

Biff's lips were very swollen and his mouth and throat were seriously dry and burning. The pain was bad, and he couldn't keep the gargles or other fluids from drooling out of his mouth. And swallowing food just hurt too much. Along with a nasty fungal rash in a very uncomfortable place...

With the new chemo treatment, which is a tougher regimen than the chemo he had before with radiation, and the pain making it all but impossible for him to eat or drink, we decided to get him checked out.

Brought him back home with more medications to combat the pain/issues. It's not unusual for this chemo to bother his mouth and it makes him extra suseptiple to fungal rashes.

He's much more comfortable now, and the doctors expect both issues will get much better within a few days. I was joking with him: last week he had the pump thing hanging off him, so this extra thing he had to wear all week - and now he's basically gonna hang out in a t-shirt, going mostly commando, to let things air out as much as possible this week...🫣😂

Never a dull moment! And, I gotta say, being at the VA on a Saturday for the first time felt so strange. We spend so much time there on weekdays - the weekend was very different.

We were lucky. There were no patients in the waiting room for the ER when we got there, but it was the first time my purse, backpack, and tote were searched, and they "wanded" Biff - something that never happens when we go in on weekdays. They were able to take care of him very quickly relative to my experience in other ERs. They let me stay with him the whole time. The doctors were really nice, and the student doctor spent a lot of time with us. The VA is a teaching hospital. We generally enjoy meeting the students, although they are less prevalent in the oncology departments.

Then, while Biff rested in the ER waiting room after he was released, I was sent into the main part of the building and down to the basement level to pick up the meds. We've been down there many, many, many times for various appointments, and I had never before noticed the window for the "Inpatient Pharmacy" the ER uses on the weekends, which was the only thing open down there today. Very short wait there, too. The usual outpatient pharmacy always takes awhile, with many people waiting to pick up their 'scripts, but it was closed for the weekend.

On my way back to collect Biff, I passed one person in the main hallway. One!!! Those halls are usually full of people!!?! I joked to the guy I passed about how weird it was, and he said, "It feels like a movie." I said, "It does! Feels Zombies are going to show up!" He said something more about having to look for an open door to hide, we laughed, and wished each other a good weekend, before I scurried past him.

Anyway, the day got long, and I've realized we need to work out a new schedule for all the daily potions and pills again, get him back on track with the preventive stuff (which we just picked up yesterday - I guess they wanted to wait to see how things went this first week back in treatment before getting all that going again...!?!?🤷). 

He is feeling better, hopefully sleeping as I write this post. And I'll make sure he's all dosed and rinsed (upstairs and downstairs, if you know what I mean) and medicated tomorrow and beyond. And as comfortable as possible. So glad we've been able to stop with the blood pressure meds (although we are monitoring his BP daily now, along with everything else - BP and temperature were good all day). 

We have been planning to watch some of my old favorite movies tomorrow (Sunday, May 21) that we haven't seen in years - couldn't find them to stream or rent online, so we have gone old school and purchased DVDs: Coming Home and The Lion in Winter. May try to watch some lighter fare to break it up a little, too - but I'm pretty sure there will also be some basketball to see at some point (although the Lakers lost again today 🤬 🙄😚)... We'll keep it easy and relaxing. Hmmm: maybe a little Doordash for a special dinner, if he's up for it.

One last thing before I end this post, since we also found out today that a dear friend's life partner was severely beaten up when he confronted a couple guys stealing the catalytic converter from his car, and another very close friend just had a bout with COVID after avoiding it until now (luckily he's doing well), I hope you won't begrudge me wishing that you all stay safe and well. Please be careful out there. 

And, if you would care to donate and/or promote the GoFundMe for our friend's partner (he is finally back home four weeks to the day since he was attacked and still recovering - he's a chef), here's that link:

https://gofund.me/8a28de5a

Getting the first pump detached...

Removal of the pump was very quick and easy.

However, yesterday he started to feel bad. Temperature has been consistently a little high for him - he usually runs a bit low - although it hung around 99.4° yesterday/today. They start to worry if it hits 100.4°... When they took it at hospital, it was 100.2°, which is a bit of a concern.

And his mouth has started to burn again and his lips are puffy and also tender, plus low blood pressure... So, we hung around to talk to the doc, then longer to wait for the on-site pharmacy to refill all the stuff he used before for his mouth burn issues. 

We had a snack at the canteen while waiting, since we were now well past lunch. Should have made him eat more. 

Hit extra traffic because it's Friday, going straight to Trader Joe's to pick up Aloe Vera juice which they recommended might help, then did our pre-planned pick up of distilled water at Target, then waited in a ridiculously long line at Burger King to get Biff a plain cheeseburger. He insisted on coming along on the errands...

Finally got home about 4pm, and he was so wobbly it was scary getting him from the car to the house/his usual chair. Just an abrupt wobbly event! Freaked me out. But, he has now eaten (so have I), and he's not wobbly anymore. Yeesh. Adding Ensure to the bag of stuff I usually bring to all appointments, like water and such.

He's not going to take anymore blood pressure meds unless his BP spikes, but we will be monitoring his BP daily, along with his temperature. And he has several "potions" to use to help with the mouth stuff. Hoping they give him some relief.

Turned into an exhausting day, but he's enjoying not being attached to the pump - and still no nausea or diarrhea, so, all in all, he's doing okay.

My fingers are crossed the next several days won't be any tougher than yesterday and today! 😵‍💫🤗❤️❤️❤️

First session of the new treatment...

Well, not counting the commute, it was 5 hours at the Infusion Center today. Should get a little shorter for the next sessions. 

And it will take some getting used to the pump he's wearing until we go have it removed on Friday. I'll try to get a picture of that at some point. It feeds the main chemo very slowly in over the course of 4 days.

They gave him a little thing, sort of a cheesey fanny pack, to wear around his waist to hold the pump and excess tubing which is attached to the port on his chest, but it doesn't stay tight. We're trying it above his suspenders now, hoping that will help it stay in place. We may try putting the strap through his belt loops, although that might complicate trips to the bathroom... The man has no butt at all, so nothing to help it stay up! LOL

He had the best nurse ever today, Linda, so we hope to see her every time now. They fed us both lunch - even had me come in to sit with him to eat. The Center wasn't at all crowded today - I was the only person waiting for long out in the hall, unlike the busy, noisy crowds typical when we went on Wednesdays. 

And, although we have anti-nausea and anti-diarrhea oral meds they gave us to take home, he feels perfectly fine so far! We'll go back on Friday to have them remove the pump, then two weeks off before the next session. 

Fingers crossed he doesn't have any dramatic side effects develop, although they warned that the worst days would be next week, so we'll have to see how it goes...

Oh, and the port was great: just one stick and done - everything fed into the one thing. Joy!

That's a bit of relief for us. We were both a little nervous how these sessions would go. And how the port would work. As it turned out? Easy-peasy!

♥️♥️♥️

Well, finally some news...

Here's Biff on a boardwalk path across from the Inn where we stayed in Cambria, April 20, 2023.

Okay, I'll get my ubiquitous apology out of the way. I can't believe it has been 2 months since my last post! A lot has happened, some really fun stuff, and I do plan to share about all that in a separate post or posts at some point. But today I'm letting you all know the latest news on Biff's health.

The bottom line is the cancer has spread to some small spots in his lungs, and Biff will be going into further chemo treatments starting May 15th. The plan is 6 sessions, one every 3 weeks. There will not be any surgery or radiation this time around.

If you are interested in more details, click on the Read More link below...