Apologies for not updating this the last couple of days. Wednesday was long and exhausting, and I just couldn't get it done. Yesterday, I fell asleep in front of my laptop and ended up napping for a couple of hours instead. Anyway.
Wednesday was chemo day. We'd expected it to be a shorter session. Biff told me last week they'd told him to expect just a couple of hours going forward, but it was 5 hours! And we'd had to get up before dawn to sit in rush hour traffic to arrive in time for radiation before the chemo - and the parking lot gate wouldn't work, had to park a little further off and walk in. At least the rain wasn't too bad.
Yesterday's radiation was quick and easy, and the drive was fast, thankfully!
And today wrapped up the 8th radiation session, first time he's had it five days in a row. And now he gets 3 days off for the long weekend. Hooray!
He had some bad headaches earlier in the week, but no more since Tuesday. Not an expected side effect, so a little worrying for me. Glad those have backed off.
His throat is getting sore. And the neck/cyst area is swollen and tender. And his voice gets hoarse more often than usual.
We had an extra appointment today with the Speech/Swallow guy, and Biff learned some new exercises to continue to strengthen his swallow function and others to help combat any impact on his voice. Impact from side effects for both areas are expected to recover after treatment ends, eventually, so working hard to preserve and strengthen, avoid the worst of the anticipated side effects in the meantime.
The Radiology Oncologist also met with us for the weekly check in, and he ordered new meds. There's a "cocktail" of medications we'll have to mix that will help with his throat pain, and an anti-fungal liquid to use (radiation treatment can cause fungal infections, so this is preventative). Took a bit of chaos to manage to get those medications before the onsite pharmacy closed up for the long weekend. Grrrrr.
A lot of dry mouth/throat that needs to be counter-acted at all times. Just ordered a humidifier - we've never had one before. And we have lots of Biotene products and various fluids to help. It's a big deal for the whole treatment, keeping him hydrated and his mouth and throat lubricated.
It's such fun for him! 😶
But it was exciting to see Michelle Yeoh and Ke Huy Quan win Golden Globes this week for "Everything Everywhere All At Once." Biff worked with both of them directly in the movie! Such a thrill to have the film be in contention for so many awards this season, and two awards won already!! So cool.
Otherwise, we are trying to find beauty in simple things and celebrate everything we can: Traffic is light? Hooray!!!! LOL
In that vein, here's a pretty photo I was able to get outside the pharmacy today.
I hope everyone has a lovely holiday weekend. Stay safe and dry!
Things are getting a little harder. Shit is starting to get real, I guess.
Had a rough night Wednesday after chemo, where they load him up with fluid to help keep his kidneys flushed. So, a lot of trips to the bathroom. And one trip in the middle of the night when he didn't quite make it in time. Not fun. Poor guy.
We've got a plan for that going forward. A couple portable urinal thingies that he can keep nearby during the night. And possibly wearing a diaper on that night, just in case. Yucky, but better than the alternative, you know?
His short-term memory sucks right now. Mostly I think because he's not quite mindful, if that makes sense. He's vaguely distracted most of the time. He can focus, especially on more enjoyable things, but otherwise, he's not necessarily paying attention for regular stuff. Lucky him, he's got me around to keep track of the little details. And (lucky him?) he's got me to nag him to keep him on track.
Those headaches were scary. Right on the top of his head. And not even the oxycodone got rid of them, although the pain would back off enough to be bearable. I was so relieved they didn't continue.
And I'm very glad we have some pain medication for his throat now. Haven't tried it out yet, but I appreciate that the doctor understood that pain is developing now, and he has given us tools to ease that. Especially since he expects pain will grow as the treatment continues.
At the same time, getting the new prescriptions filled today, before the VA pharmacy closed at 5:30pm for the long weekend, was a major frustration. The doctor said he'd order them right when we left before 2pm. We got to the pharmacy by about 2:30pm, and they weren't ready. They didn't even show the order yet. I sent the doctor an email and left a voice message for him immediately.
We decided to go to the grocery store to grab a few things and dropped them at home. I then got on the phone again. Hadn't heard back from the doctor, so I called the pharmacy - still not seeing the order. They were annoyed with me that I couldn't tell them the names of the medications, which made it harder for them to look for the order...?!?!?! They ended up transferring me to offices at Building 345 where radiation treatment is done and where the doctor was today. I was bounced around a bit, and finally had someone on the phone tell me that the doctor was placing the order right then! Okay...
I waited about 15 minutes, and then I called the pharmacy again. Still not showing the order - "oh wait, let me read more on these notes from the oncologist... do you mean the Oxycodone?"
No. We already have that.
"Hmmmm... Oh, do you mean the anti-nausea meds from chemo?"
No. Already have that, too.
"Well, let me transfer you to the..."
I already did that! They've already told me it is ordered.
"Let me read a little more... Oh, yeah, here are 5 new things - " (She read them off to me. No idea how she expected me to be able to remember those medication names, but...) "However, the order shows as Pending, so that means they aren't going to fill it yet."
Yep, I ended up feeling like Shirley MacLaine in "Terms of Endearment" (if she was fighting off tears and trying not to yell at the poor woman on the phone), explaining that I needed to make sure we got this information for my husband's pain, so that he can eat, and the long weekend, and you close at 5:30pm, and what do you suggest I do?!?!?!
She ended up sending a note to the pharmacy with my phone number. They never called. Biff went ahead and went back at 5pm (he had to be there with his ID, so he suggested I didn't need to go along and could deal with some other crap at home in the meantime). Biff called me at 5:22pm, letting me know they were finally filling the order. He said it was obvious everyone was getting ready to shut it down for the long weekend. But he came home with a large bag of new meds!
To add to what he's already got going on. Yeesh.
Aside from the treatments nearly every day, and other appointments, every day includes:
- Dental hygiene session 1 - brush, oral rinse (from dental), fluoride treatment (gel in trays that go on his teeth) for 10 minutes, followed by using his new water flosser.
- Dental hygiene session 2 - brush, oral rinse (required twice a day), water flosser
- Swallow exercises: 3 different exercises (with a couple more added today), 10 reps each, 3 times a day
- Vocal "warm up" exercises, new. Once a day, plus before any event where he expects to need to speak a lot. And he needs to work hard not to push his voice too much, not to shout over loud noises and such.
- Regular medications: three times a day, he already had multiple medications he takes for completely unrelated health issues...
- Keeping a food log, so we have a record to use for reference and can track his intake as the treatments progress...
- Various things like Biotene products to help fight the dry mouth (lozenges, spray, gel, rinse), lotion for his face and neck...
- Doing our best to get nutrition into his body, along with the soothing foods like ice cream, so Ensure and V8 and Pedialyte and water...
- And now he has to add the anti-fungal oral rinse 4 TIMES A DAY... And the pain "cocktail" that we will have to mix from 3 different fluid medications which he can take as needed up to 4 times a day...
- And, you know, take Tylenol or other OTC pain meds if that headache comes back!
- Oh, yeah: we also have two different anti-nausea medications he'll have to take if that becomes a problem. Luckily, so far, no nausea has developed.
Seriously, it's amazing. And I feel like I'm missing something. HA! (Well, I take tons of notes, keep the paperwork organized, and handle all the updates to family and the blog.)
What a crazy dance. Life is so... strange.
It's a delicate balance, nagging him to do what he needs to do - aside from showing up for every treatment, or more gently nudging ("take a calming breath, baby, try to relax"). I have so many phone alarms set up now, but I don't know how we'd keep track of any of it without them. Trying to organize with "habit stacking" as much as possible. He gets grumpy about it now and then, but I'm actually impressed at how good he's being with all this shit.
He is very determined. The road is long and rough, but he's not stepping off it. And I'll be there to help every step along the way.
Yesterday he was so sweet about me needing and taking a nap. He was very aware of how worn out I was after a couple of really rough nights and long, long days. I truly appreciated it. I mean, he's the one that's really going through the hard stuff. Sure, it's not easy for me either, but still.
My sweet, sweet guy. Gotta get him through this!
Okay. That's all I can manage for now. And likely I'll take the weekend off from updating. But I'll make sure to post updates again next week!
Much gratitude to all the support from everyone. I only ask that you send positivity in any manner you choose. That's the focus! We are going to get through this! He is going to heal and life will go on. With grace and love. And laughs!
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