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View count:437,507
Likes:36,108
Comments:2,895
Duration:16:15
Uploaded:2023-05-26
Last sync:2024-12-05 06:45

 (00:00) to (02:00)


Hello! So I just finished editing a Vlogbrothers video and now I'm laying in bed again.

And I wanted to make a video I think because like I made my video and I watched myself while I was editing the video and I was like, 'Look at this guy he's like he's fine!' Which is fine. I don't mind looking like I'm fine, I'm feeling okay today. But I also… I guess I'll back up.

So I had my first chemo on Friday. So a week ago, as of today. And that day I felt fine. I slept when I got home because they give you some anti-nausea medicine that makes you sleepy, but I felt like okay that day.

And then the next day I felt a little worse. And then the day after that, I was like, 'Ah this is what chemo must feel like.' And I had been told that you feel really bad: you're achy and fatigued and just, you know. I'll talk some more about side effects more generally.

So like that second day and then the third day and then the fourth day and then the fifth day, I basically felt either worse each day or about the same. So like, the fifth day I felt about the same as the fourth day, but the fourth day was worse than the third which was worse than the second which was worse than the first. It was a slow descent into the serious side effects for me.

Which were: the first, the most annoying one was hiccups. Which were severe and what they call intractable, which means that they don't stop for a long time. And I had like maybe 12 bouts over two days, 30 minutes each.

 (02:00) to (04:00)


So, like, really painful because I had had a surgery on my chest recently for my lymph node removal and for the chemo port - two different surgeries. So, like, that just hurt. But like, hiccups are kind of a silly symptom but like, really uncomfortable. Interfered with sleep a little bit.

And then I have a cough, which if you know anything about chemo is a thing to be concerned about. My lungs seem fine, though. And I had a little bit of cough before I started the chemo so I'm probably just still working through that.  A headache that has been constant for days and is very unpleasant.

And then mouth soreness, which is a thing that is really common with chemo, but not too bad. And that has started to resolve itself already. You know, just like once the body's sort of like doing its job it's much more able to repair damage. I also had constipation, which has also resolved itself - with, you know, help of medicine. 

But the big one is fatigue. And then also the sort of interrelationship between fatigue and mental health stuff. So like, it's really hard for me to tell the difference honestly between fatigue and depression. And I'm not, I don't even know what the difference is as a human being. And when you fatigue because you're ill, it's always - this is not a new thing - it's always been hard for me to disentangle that from the mental health consequences of that, because the symptoms of both are very similar and they cause each other. So it's tricky.

 (04:00) to (06:00)


Now, there's things you can do. Like if I'm fatigued outside I feel better than if I'm fatigued inside. If I'm fatigued after a shower I feel better than if I'm fatigued and haven't taken a shower in three days. So like, there's things you can do. And I've taken a stupid walk for my stupid mental health every day. Even one day I went a little too far and I had to like sit down and just sit down for a while, and be like, 'Should I call someone?' But I made it home. 

And then day six was yesterday. I was feeling significantly better. Today is day seven and I feel again better today. Still feel bad. This fucking headache is… been around. And I guess that's probably going to be for months, honestly. 

And then like the concern… the mouth soreness is better. I think that that's most of my symptoms. There's a couple of super weird ones, like you smell different. That's very strange. One of the chemos has sulfur in it, so you're like stinkier. 

But when I was in the middle of that, like day three four five, I was you know just like looking at TikTok. And TikTok has figured out that I have lymphoma and so it's giving me chemo content. I didn't say it, I didn't google anything or search anything. It just figured it out because I was watching it. It's amazing.

 (06:00) to (08:00)


And I was watching this person who was obviously pretty far along in their– same chemo regimen I have. And they were just, they were doing stuff and I was like, 'How the hell is that person doing something?' I was like mad about it. And then I realized like, oh well they're probably in a part of the cycle where it's not as bad, or it's not as bad for them. Like, it's different for everybody, even if you're on the same chemo. And it's different from treatment to treatment for the same person. The consistency here is just not there, which is frustrating and hard. It makes it harder for the doctors, makes it harder for the patients, but.

But I wanted to make this video to be clear that like the way I look on day seven is not the way I feel on day four. And it's also not the way I feel all the time on day seven. Like I made that video and I edited it and then I went for a walk, and then I came back here and I watched fucking Ted Lasso and fell asleep.

And my executive function, like, that's another symptom, is not good. There's being unable to do stuff, and there is being able to and knowing that I need to and not being able to, if that made sense (chemo brain is also a thing). If you know what I mean. Like there have been times when I have been perfectly able to do something, I know that I must, and I have a hard time getting myself to do it. And that's also always a little bit of a thing in life, but the magnitude of that problem is like tenfold over usual and that's real.

 (08:00) to (10:00)


I feel more capable today than I did yesterday and so hopefully I'll get like a solid week of feeling all right for every— And a solid week of feeling really bad, basically, during treatment.

Heartburn, I didn't mention. I never have a problem with heartburn, having problems with heartburn. There's medicines for all these things, though. I went from having one medicine to, I mean like my counter right there is full of medicine, but then the bathroom counter is also full of medicine, it's wild.

I've got like areas of medicine, so there's like an anti-nausea section and then there's anxiety section, which I haven't been having to take which is great. And then there's like the other section, where the heartburn medication is and, what else is in that area? Something. I can't remember.

No appetite problems, no food problems, which has been great, feel very lucky for that.

But I didn't want– I just didn't want people to think that, especially if you have gone through or are going through something similar, I didn't want you to think that like 'that guy is Hank every day on chemo'

You know, the chemo schedule and the Vlogbrothers schedule actually work together pretty well, because by the time it's time to make Vlogbrothers it's chemo day six or thirteen. So like, the day to make a Vlogbrothers video will be like the best I feel, once every two weeks.

 (10:00) to (12:00)


But that doesn't mean that I'm gonna feel okay. Especially because what we've been talking about so far is like the normal side effects of chemo and then there's also complications is what they call them. And like, side effects can turn into complications. For example, if I was so constipated that I needed medical help, I'd be in the hospital and that would become a complication. Which is a legit complication of chemo that sometimes that very thing actually happens.

But the big ones with ABVD, I think the big one is neutropenic fever. So judging by my headache, I probably have some amount of neutropenia right now, which is when you have very low amounts of white blood cells, which can cause headache. And it's just very common with ABVD anyway.

But they don't actually treat you for having low white blood cells. They do sometimes, but not if you're a healthy 43-year-old on this chemo regimen with this disease. But they do treat you if you get neutropenic fever, which is where you are sick and have no white blood cells. And so your body is trying to fight off the disease but it doesn't have all of its normal tools, so you just get a really high fever and you have to be in a hospital for that. So that's like the–

You know, and several people I know who've been on chemo have had that, and they, you know. The treatment is well established, they know what to do, but like, you're in a hospital and you have to take antibiotics and you can get C. diff and like you get complications on the complications and um. So like, it's legit and something that you don't want to have happen, so. 

 (12:00) to (14:00)


You know, the big way to avoid it - and luckily I'm capable of this - it's mostly to avoid situations where you might get sick. But, like, you can get your own fucking self sick. Like, there's bacteria in my body right now that could make me sick if given the opportunity, you know. Like, it's all about balance. You can get pneumonia from your own lung microbiome, and it happens to people all the time. Especially when they're immune compromised.

So that's just a thing to super watch out for. I haven't had even a sign of fever yet, which is great. But, you know, there's a long way to go before I sleep, as they say.

So yeah, I wanted to make a little bit of like real chemo content, even though if I was making this when I was feeling worst, I don't think I would do that because it's just– it wasn't pretty. And also just getting myself to do it would be very hard, because it feels so bad. And yeah, yeah.

So I had a great conversation with my doctor yesterday. If you know about ABVD and are concerned about my cough because bleomycin and lung stuff, I've got an appointment with the lung people next week to do a check in there. They're not worried about it though, my lungs are operating great.

 (14:00) to (16:00)


What is maybe happening is the lymphoma itself irritated a nerve that is causing me to feel like I need to cough, even though I don't have to.

Or it could be that I just started to clear my throat a lot and I'm making myself cough even though I don't have to. Which, since I found out that that is a thing that might have been the case, I've been clearing my throat less and coughing less.

So if I've had a two week long cough because I was coughing because I was clearing my throat a bunch because I had cancer anxiety, then I guess that's what that is. That's a thing that can happen. But we don't, I don't know.

And, yeah, last side effect I didn't mention is that my scalp hurts. Which means, you know what that means. So we'll see how fast that happens.

I have a haircut appointment - I had it already planned - next week, so if I'm starting to feel like I want to prevent the mess of it all, I might just have it off. And I'll try and maintain these eyebrows as good as I can. Get myself some eyebrow pencils and take a couple YouTube tutorials to keep the expression going, at least.

But seems like this will probably go, so be prepared for that. And yeah.

 (16:00) to (16:15)


I am now seven days away from the next treatment, at which point it will all start over again. And I'm not looking forward to it, but at least now I know what it was like and I got a couple of strategies to deal with it.

Okay, thank you. Goodbye.