I’m just gonna come right out and say it. Chemo has been 100% ineffective and has, once again, done absolutely nothing to help her. This week’s scan showed that not only has the spread not been stopped, it is still growing.
Meanwhile, the chemo has absolutely wrecked her. When she restarted chemo on April 10th, she still had hopes that she’d be able to run the OC Marathon a month later. Her physical condition started deteriorating immediately. Training, even short distances, was getting difficult. It was becoming doubtful she’d complete the race. On April 29th, one week before the race, we attempted to run the full distance near home, so that if she wasn’t feeling up to the actual marathon, she would be able to submit this GPS-tracked workout as a virtual race and still get her medal. That day, she made it 9 miles, and most of that was walking. By the end her hands and feet were somehow both numb and hot. She stopped training after that.
As i’m sure you’ve all seen by now, i was able to push her in a wheelchair through the entire marathon, and she still got her medal. It was a good experience for both of us and i’m so happy we did it.
She hasn’t had good days since then. The last few weeks, she’s barely left the bed. We’re to the point now where she will get up to go to the bathroom, which is literally three steps from the bed, and by the time she gets back to the bed she’s breathing heavily and completely exhausted. She can barely eat, managing maybe a 4oz cup of Jello or apple sauce most of the time, maybe small bowl of macaroni at best.
She’s also developed a lot of food aversions. She’ll ask me to bring her a specific food, and when i get it to her she’ll take one bite or even no bites and tell me she can’t eat it, it looks revolting. She was having a lot of oatmeal, but now she says oatmeal is too dry. She’s also been vomiting a lot. She can’t take some of her meds, including her pain meds, without food in her system, so this has been a struggle. We’re gonna try instant mashed potatoes today, she had a sudden craving for them so i picked some up. Hopefully this goes well.
Her skin is dry. Her mouth is dry. No matter how much water she drinks, she always seems to be dehydrated.
Additionally, she’s been in constant pain. Some days i sit in bed with her for hours, just rubbing her back, in an effort to keep it manageable. She has woken up at odd hours almost every night in the last two weeks either vomiting or in so much pain that she can’t find any position that doesn’t hurt. She has to keep pushing Zuul and Seras away, because most contact she has with them hurts her, and i think it’s very upsetting to them. Zuul and Seras have both been exceptionally clingy lately, i think both because they’re very concerned about their mom, and because in the last three months they’ve each lost their respective companions, Copper and D, so they are now an only dog and an only cat for the first time in their respective lives. They’ve also been clashing with each other a lot lately, which doesn’t help us at all.
I’m so afraid to leave her alone. I know there’s not a lot i can do for her, i can’t take the pain away and i can’t heal her broken body, but i can provide small comforts and temporary relief. I haven’t even wanted to leave her long enough to do my own morning workout. I’ve gotten her down to the gym a couple times, where she’s sat on the recumbent bike for half an hour while i run on the treadmill, but she goes so slow on the bike and it still wipes her out entirely for the next 36 hours. We haven’t even tried that at all in the last 10 days. Her legs have gotten so skinny, the muscle is being eaten away so quickly. She’s lost years of conditioning in the last six weeks. She’s also lost over 20 pounds since restarting chemo.
Meanwhile, her liver, which is now home to over 50 lesions, has enlarged to the point where you can see it poking out of her belly like it was hiding under a blanket. If you touch it, it feels hard. It’s just as uncomfortable as you’d imagine.
Since it’s useless, she’s been taken off of chemo effective immediately. Unfortunately, the scan was based on just the first two doses. She had the scan on Monday…and then was given a third dose on Tuesday, which we now know was unnecessary and is only going to contribute to her having a couple more shitty weeks. At least they didn’t give her the Zarxio this time, the white blood cell stimulator, since that fucks her up more than chemo in the short term. Her oncologist had told us the last time we saw him in person, April 27th, that the chemo drug he had her on this time, Carbotaxol, is like “hitting it with the hydrogen bomb,” and “if this doesn’t work, then we’ll start to get worried.” Those words have been ringing in our ears all month.
Fortunately, when he called yesterday, he wasn’t just bringing the bad news. He already had a backup plan ready to go, as well as a backup plan to that backup plan. We already knew that after chemo, the plan was to apply for more clinical trials; it was just a question of finding the right one for her case. He came up with one that’s for a new drug which is essentially a more powerful version of Kisquali, which is what she was on before that successfully kept her cancer in check for over a year, until suddenly it didn’t. She was taken off of Kisquali because the cancer was exhibiting heterogeneity, but further scans haven’t really expanded on that. We’ve long suspected that part or all of the reason the spread happened in the first place was because they asked her to skip a week of Kisquali because some of her bloodwork values were out of spec; maybe if she hadn’t skipped that week, this wouldn’t have happened. But we will never know. All this is to say, we feel that putting her on super-Kisquali might be a very good move for her right now. This drug has just come available in the last two weeks. And if she doesn’t get into the study or if this drug doesn’t work for her, the doctor already has another option ready.
If she gets into the trial, we’re expecting the new medication to be shipped directly to our door within a week. So that’s at least some shred of hope. Also, her Medicare starts next month, so she’ll be able to see a wider network of specialists. Her oncologist already has an appointment set up for her at Cedars Sinai just a few days after Medicare kicks in, and he’s wanted to send her to an expensive specialist at UCLA for a while, which will now be possible.
You know i hate to say it, but i always have to. If you want to help out, our GoFundMe is still active. Meanwhile, i’ve been working on a documentary about running a marathon with cancer, i’m hoping to have that finished soon. The video i made about her second first day of chemo last month got over 1600 views, which isn’t a lot for a YouTuber but is a lot for me, so i’d like to do more of those. I had a few edits about the subsequent week, but Amanda didn’t like them and i haven’t figured out how to fix it yet. What i’m getting at is, i’m going to be starting either a Patreon or a Ko-Fi, so that i can focus on those kind of projects and work from home, thus being here to take care of her while also bringing in some money. Besides the documentary, i’d like to start working on a series chronicling her entire cancer experience, from moving to LA and finding the lump, through the pandemic, to where we’re at today and through to the end of the journey, until a point in the future when i can release an episode titled “Remission.”
That’s it for now. Love you all.
No comments:
Post a Comment