I'm gooooooin' through chaaaaanges

Danielle can't type anymore, so this is her husband, Aaron. I'll be taking over blogging duties.

It's been quite a month. In her last post, Danielle spoke about how we went to Florida, and I cannot stress enough how amazingly, mind-bogglingly lucky we were re: the timing of that trip. It was a much-needed respite, and it's easy to imagine how things would have been very, very different if her symptoms had started just a few days earlier.

Anyways, let's talk about what has been going on. Week over week, Danielle has been getting weaker, particularly on her left side. At the start of all this, we were using a walker, which we happened to have from when Danielle broke her ankle in late 2020. She was getting around on her own but with me nearby to supervise, just in case. Physical therapy seemed to help, and they gave us a "seatbelt" - a strap that we clip around her waist for me to hold on to without having to be up in her grille. On straight-aways, such as the corridor out of the bathroom or going through the house toward the living room, she would often get sick of the whole walker thing and just pick it up and walk normally. The sight of this made me laugh, every single time.

Slowly but surely, things got more difficult for her. No more "zooming" (as I called it when she picked up the walker), and transitioning to/from standing came with increased unsteadiness. Her mom brought a "transfer chair" - like a wheelchair, but narrower, and with four small, same-sized wheels. We started using it in the mornings, when she was at her weakest and most disoriented (before her daily steroid dose had a chance to kick in), and before we knew it, she wasn't using the walker at all. Even so, we got our routine down. "Stand, dance, pants, down" is how we get her onto the toilet, where "dance" means shuffling in-place 90 degrees, with me trying to push at her left foot with my own, since she can't reliably do so herself.

Next to change was Danielle's speech. I first really noticed it when she was participating in her brain tumor support group meeting one day. She was doing a lot of talking - no surprise, if you know Danielle - and she seemed just a little bit slurred. This has continued to degrade over time, and now she speaks falteringly, often having to repeat herself as I utilize active listening to make sure I'm picking up each phrase/clause she's saying. For a little while, it seemed like I was the only one who could reliably understand her, but our families have gotten used to it now. I feel bad when Danielle tries to make small talk with the physical therapist, and he occasionally talks over her about the next exercise or whatever, because he can't understand her.

We had a bad couple of days about a week ago. Danielle's seizures (which, for those who don't know, are not what you see on TV - no twitching or loss of consciousness - if she didn't tell you she was having a seizure, you'd never know) had been becoming increasingly common throughout the week. Her neurologist had prescribed an additional medication, but it really knocked her out, even with a half pill (so a quarter the prescribed dosage), so she hadn't been taking it. Well, that Friday, she had a semi-early appointment with her oncology PA, and Saturday she had a really early appointment to get an infusion of Avastin (which attacks abnormal blood vessels supplying the tumor, thus providing quality of life improvements). Those two days, she was having a seizure every 1-2 hours for a good portion of the day, and Saturday she slept through almost the entire day.

We've got her on a more stable schedule now, and the seizure she had this morning was the first she's had all week. Part of it includes a quarter pill of the secondary seizure med (so an eighth the dosage), and the other part includes not having Torin here all the time. The latter is tough, because we want to be around him all the time, but he's so noisy and all over the place that it was keeping Danielle from resting when she really needed to. My parents have had him at their house in Brighton, and have been bringing him by single day. It's been our daily dose of joy to see him. Beyond having few-to-no seizures, her weakness and wakefulness is a little more predictable too. She generally sleeps through the morning and has another nap sometime in the afternoon. She's not completely, fully alert until the evening.

Eating has become a new challenge, too. Danielle's left-handed, so losing all her strength on her left side has left her strong side doing things it's not used to. It started with me helping her with messier foods, but now I'm feeding her bite-by-bite. (Wow I'm such a computer nerd. My fingers kept typing "byte" there.) She likes finger foods like chicken nuggets because she can still feed herself. Even then, we have to be careful, because it's real easy for her to choke on things now as she loses control of more of her throat and mouth muscles. Even her own spit, which is why her mom will be bringing a suction device (like they have at the dentist). She wears her retainer in her mouth any time she's not talking, to help prevent herself from biting her tongue or the side of her mouth.

Some additional complexity and/or joy is coming this week: my sister is being induced into labor! We're really happy for her and bro-in-law, and we can't wait to meet Torin's cousin. The complexity comes from wanting my parents to be able to be there with them some, as (from personal experience) being a first-time parent is really daunting. My sister insists that we need Mom and Dad more than they do, and that may be true, but it doesn't mean she doesn't need them. So to that end, I accelerated my search for daycare for Torin...

...And we lucked out! There's a place less than a mile away, and we took a tour there yesterday. My parents had already seen it a few days ago and had given it a glowing review. Seeing it for myself, I concur with their assessment. It's really fantastic, and I know Torin is going to love it there. We were able to take Danielle there too, which I was really thankful for. Getting her into a car is very challenging, but it was worth it.

So starting sometime this coming week, I'll be taking Torin to not-quite-school. It's a strange feeling, and I'm both excited and nervous for him. It's going to relieve a lot of pressure on us; one less thing to worry about!

I've mentioned my parents, and they've done a lot more than "just" watch Torin, but I also need to give a real big shout-out to Danielle's family. Since her last blog post, either her mom or her dad has been here every single day, helping around the house, helping with Torin, and helping with Danielle as her mobility and manual dexterity decline. Her stepmom came by for a few days too to fill in a coverage gap. We've gotten into a good groove of lifting and shifting Danielle to and from the bed and commode together. 

All of this support from both our families has made an immeasurable difference, and I can't imagine what it's like to go through this without a bunch of retired persons ready to drop what they're doing and come hang out. Or what it'd be like to not have insurance.

I waffled about whether to talk about feelings here. But I think I should.

It's hard. Watching your best friend in the whole world, the person you love above all others (besides your mutual love for your child) weaken and degrade before your eyes is not fun. Watching her fully functioning (albeit slightly slowed down) intellect be constantly stymied by her body's refusal to cooperate is crushing.

But I wouldn't want to be doing anything else right now. I savor every moment together, and I take it day by day. I help her play Wordle after I've done it for the day (she kicked my butt yesterday, guessing it in 3 in a couple minutes whilst I agonized over it for like half an hour, finally guessing it in 5). We obsess over Torin. We plan for his future. We watch Big Mouth on Netflix together. If she's awake, I'm with her. (I only work when she's sleeping, which of course has tanked my productivity. My company has thus far been very understanding, for which I am eternally grateful.)

I see the end in sight, and it scares the shit out of me. But I know that Torin will be okay, that I can give him a good life. In the end, that's all Danielle wants too. 

Poolside in Florida

Messy home-made eclairs this morning

Christmas at Mimi and Papa's

Torin helping Papa fix his new toy