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Duration:12:04
Uploaded:2023-07-07
Last sync:2024-06-03 12:30
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 (00:00) to (02:00)


Hello, so the first chemo treatment I did this, and now my last chemo treatment, of this treatment plan anyway, I'm doing it again. 'Cause I just posted my Vlogbrother's video, and in it I seem quite chipper. Uh, and there's some movie magic behind that, which is that I recorded it just before my last chemo.

And now I'm a week out from that, so that video was recorded like uh, like eight days ago. Um, or more than that and then I edited it eight days ago. Whatever. And so I wanted to give you a little bit of a actual look at what- how I'm feeling, how I'm doing.

Um, so with this treatment plan I get four chemos, two cycles is what they call it, of ABVD. Adriamycin, bleomycin, vincristine- vinblastine something like that, and dacarbazine. You don't care. They're each special in their own way, and they each do their own thing, killing cancer cells but also making you feel absolutely miserable and causing all kinds of near terminal long-term side effects.

Um, and cancer treatment sucks. Um, like it's physically one of the hardest things I've ever done. Uh, it's also psychologically very hard. There's like lots of little psychological things that are hard about it like you need to pay attention to your symptoms while you're going through cancer treatment because you can get a number of really serious complications, and it's best if you catch them early.

But that means that you're constantly paying attention to your deteriorating body and wondering if this is one of the things. Like am I getting a fever now? Is this cough heartburn or is this cough something more serious? And, uh you know, like to what extent is this level of fatigue the correct level of fatigue? What's going on with this headache? Et cetera.

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And uh, so that's a hard part. And of course, also there's just like- you gotta keep doing it even though it's very unpleasant. Now it's nice that like the doing of it is bad, like getting the chemo, the actual like infusion part, is bad. But it's like not the worst part of it. The worst part of it is a couple days later when it really hits you.

Um, but I will say the first time I did it, it was like "oh that's not so bad". I didn't even really notice the infusion taking it out of me, and the last time I did it, I was like really wiped out in the infusion center. And, uh like it is a cumulative thing, and for a lot of people who have Hodgkin's, you have to do four or even six cycles.  Um, and I may yet someday have to do more, um but that's probably not necessary for a person with my stage of disease.

Um and I really like- that sounds really hard. I think ABVD is not one of the nicer ones. Um, all chemo sucks to some extent, but- and some are worse than this, but it's definitely one that sucks, is what I've heard from doctors who watch people go through this. Um, and like it's just hard to, like it's hard to be lazy all the time.

And I can't even like, I can't even enjoy stuff very well. Like my brain doesn't work super well, so it's hard to read, um and like keep everything in my head, and I fall asleep all the time. So audiobooks are hard. I can't keep track of where I am in the audiobook 'cause I keep falling asleep.

Um, and you're just uncomfortable. You know that flu-ish feeling where you just like can't ever get comfortable? It's like that for days at a time. 

 (04:00) to (06:00)


Um, and so I like the idea of making videos like this one, just to be like- 'Cause I think I mentioned this in the first video I made, like I watched a video of a person who was going through chemo, and they were like going on a little vacation, like a day trip, and I was like "how are they doing that?"

But then, like you know, it- you know, a few day's before your infusion, you're feeling pretty good, or I am. And I'm like "yeah, I see how you could do that." And so like, I mostly make my videos in those, you know, in that five days before I have to get hit again. And that's not showing like a true representation of how I'm feeling.

Um, and yeah, it is the thing though. And then if you want to know where we go from here, I'll get a scan that'll tell me how we're doing. And then I will, regardless of the outcome of that scan, you go straight into radiation, so if there's still some cancer, you hope that the radiation gets it. If there's no cancer visible, there's still cancer and so they give you radiation anyway.

Um, and that's gonna take a while. So, you know, it'll still be a couple a months before I'm all the way done with treatment for this treatment plan. And I keep saying treatment plan because like, when you are sick, they start you on a treatment plan.

Sometimes, not really with Hodgekins, they will adjust that treatment plan based on scans and how you're doing. They'll definitely adjust based on how you're doing. If you aren't able to tolerate the treatment, they might give you more space between treatments.

If you get sick especially, like if you get a fever and you're- 'cause your immune system is just wiped when you're taking these drugs in particular, uh 'cause they're designed to kill immune cells 'cause it's a cancer of the immune system.

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So, uh, your immune system is totally wiped and if you get sick they obviously don't give you chemo again, they let you get better first.

And so like, there's adjustments to the treatment plan, and uh but, this one is not, I can't remember what they call it but it's not like 'scan directed', um, some treatment plans are. And so I get the scan, uh, and then I just go straight into radiation regardless of what the scan says.

Um, and uh, or I don't go straight in, I, actually they give you some time to recover before they start you on radiation, and also they have to build the radiation plan. They divide it up so they like, know how much they want to give you, but then they divide it up over 10, 15 days, or 20 days, or a month, it depends on what you're getting, uh so that you don't get it all at once cause that would make you very sick, instead you get it 15 minutes at a time over the course of weeks. Um, and like what I've heard is that won't be anywhere near as bad as radiation, but always I hear that from people who are like "probably, you probably won't and, and probably ___ with this particular plan, not guaranteeing anything".

Um, so uh yeah, and then from there you, uh, either, you have stubborn disease of some kind and you have to start a new treatment plan pretty immediately, um, which is pretty rare with this cancer, um, and based on just like, feeling where those tumors were, uh, with my fingers seems unlikely, um, or you start on a schedule of monitoring where you get scans every period of time for a long, for you know, at first fairly frequently, and then over time less frequently, for a long time.

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Um. To monitor for relapse. And that's, and then also there's like, like I don't know how in the details you want to get here, but um it's fascinating to me that like ther's also monitoring for non-cancer. Um, so I have to continue to be monitored for lung health because of the chemo I was on, and for heart health because of the chemo I was on. Um, because two of the drugs, one of the drugs I'm taking can really mess with your lungs and cause sudden and surprise scarring, and one can cause, um, you know the heart muscle to start to deteriorate, uh, over the first year usually. Um, which they want to be really careful so they can catch that early and Etc. It's rare, but it's a thing that's common enough that they check for it, um, and of course it's common enough that I'm nervous about it. Um, so yeah, uh and and the treatment plan can also include some like, uh, you know there's, it's really. I think that we think of cancer as like kind of binary you have it or you don't, but a lot of people come out of cancer treatment with disability, um, of varying amounts, and with sort of lifelong chronic illness. I have some experience with chronic illness but like, you know, you don't love it, um, but it's possible with this treatment plan that I come out relatively unscathed. Like I, I will have to do some rebuilding of my body, which is not in as good shape as it was a couple months ago, but certainly it will be better than if I had to do this for six months, um, or a year. Uh, no one does ABVD for a year, not now anyway, um, but other chemos, and yeah.


 (10:00) to (12:00)


So that's the, that's basically the whole story I think. It's basically all of it. Um, and, yeah I mean my symptoms right now are, I'm very tired, it's a lot of work to do anything, my brain isn't great, it's not at full capacity, I got a headache, um, and I feel uncomfortable you know. I just feel uncomfy all the time. So, that's kind of where I'm at, and I appreciate, uh, it's kind of nice to, I mean it's been, in in addition to it being quite hard, it has been fast it's probably felt faster for you. Um, the chemo part of it has been quite, you know we're through it, we're through it. Um, which is a wonderful feeling to know that I don't have to go do it again, which I would do, but I'm glad I don't have to, um and, and just get started on the next part. And my brain is a little bit like, there's a little bit of like anxiety coming out of that where, when I was in the midst of it, it was like well this is the terrible thing I'm doing, and that's my whole entire focus. And now, I'm still like, the thing is I'm not doing chemo again, but I'm still feeling chemo you know. I'm, I'm in the midst of the symptoms. Um, and so uh, yeah I'm the uh, next step uh, is radiation, but like there's just kind of this gap here that like I'm not, I don't have like a thing I'm supposed to be doing. Um, so I, I need to like, I need something to orient toward and I don't really have that right now, and I it's like, I'll get it, it's just gonna take me a moment. Um, yeah, so that's the story of where we're at.

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And I'm gonna, and that's my cat. I'm gonna lie down now.