Friday the 13th

I’ve gotten so far behind on updates – I’m trying voice notes and transcription. Please pardon the gaffs!

Okay, are we recording sounds like we are. Okay, good. So, it’s been a while since my last update, and I don’t know if I should blame them on laziness or hesitancy to talk about myself. Not really sure,

So I’m going to try and remember all the things that have gone on since my last update and then catch you up to speed. So today’s date is Friday, the 13th. It’s the 13th of August, 2021, and I think probably the last time I updated was shortly after I got released from the hospital during the springtime. But anyway, nothing much has happened with the exception of my last round, which would be round four of my clinical trial so a round basically lasts about a month I think they do it like 28 days or something like that. But you get basically four, I believe is four chemo doses – throughout the month, and then the next week you would get the T cells. And then you get, like, a week break. So, the chemo is like Mondays and Fridays so you get that over two weeks, then you get the T cells the next week, Then you get that week break.

So that last week the week I got my T cells. The Friday that I came in to get T cells. The evening before that, I felt a little off like I was getting a cold or something like that. So I set my temperature because they’re very, you know wary of temperature changes and stuff. They don’t like to see high temperatures because it could be an infection. Anyway, check my temperature. That evening, and it was normal, it was fine. So I didn’t think anything of it. The next day I went in to get my T cells or was it a treatment I can’t recall right now. So it was either chemo or T cells. But anyway, turned out when I showed up, I had spiked a fever. And of course, when that happens you know they want to watch you very closely. They want to run tests and stuff to make sure that you’re not. You haven’t got any kind of infection that’s going to cause problems. So ended up going in the hospital again for temperature which you know this is like the third or fourth time this has happened to me. So spent about five and a half days total in the hospital for that and got out the temperature went away. basically they attributed it, they thought initially a common cold, but then they’re thinking, you know, maybe it was the body’s normal reaction to the T cells, because when you get the T cells. You shed. After that you shed some stuff because they’re working, they’re doing their job. So, anyway,

it wasn’t a big deal to me because I’m kind of used to it now. But anyway, it’s just a big time suck. So today, I showed up for treatment this is day one of the fifth round in this clinical trial. And this is so, you know, scheduled to be the last round, provided after these chemo treatments over the next couple of weeks. And the last T cells, week after that. My cancer numbers should be down, you know, hopefully in the remission level where it’s you know basically undetectable. So if that’s the case then I won’t have to come back for anymore, they’ll just keep monitoring, you know, hopefully, the T cells will do their jobs and keep the cancer suppressed for a long period of time.

Anyway, that’s where we’re at right now I’m feeling good. I’m not as tired as I was a few weeks back. I didn’t need any blood transfusions. I’m still you know not normal, as far as blood and platelet level and all that good stuff goes.

But I’m close enough that they can, you know, give me a treatment. They did withhold one of the chemo components today. We’ll look at my lab numbers again on Monday to see where we stand and then perhaps continue that again. But for right now, everything seems to be going well. Again, I’m feeling good. I’m able to do a little bit of work, you know, like physical stuff outside and not be super tired and stuff like that right away.

I certainly don’t have the endurance that I had, you know, prior to, you know starting treatments and stuff like that. Because the chemo and all that good stuff, it kind of knocks you down a little bit, but hopefully after this round after this month, you know, perhaps you know September or October, I may be feeling closer to normal as far as physical activity goes. And I’m very much looking forward to that because there are a lot of things I got to get done around the house and outside stuff like that needs some work on my vehicle and there are all kinds of things to do. So, looking forward to hopefully you know, reaching that remission stage. And then, you know, enjoying that for a while.

So yesterday, I had an appointment to get a COVID test, they do that regularly. The COVID test, I passed, I was negative again. So, dodged the bullet again. And after that, I had some appointments at the VA. And I don’t know if I have written about this before but I know that when I transitioned from the VA to Froedtert as far as getting treatments you’re going from the standard of care at the VA to the trials at Froedtert.

I just felt like it was surreal being afraid or, it was like stepping into another world. I was very uneasy about going to Froedtert for a couple of months, I mean it took me a while to get comfortable. And I was struck yesterday because I had a similar feeling when I went back to the VA yesterday.

After, after having been at Froedtert, all this time, going back to the VA. I mean it was familiar because I’d been there so many times before, but walking down the halls and seeing the people and the atmosphere. The check-ins, the nurses, all that kind of stuff. It was just that. Almost Twilight Zone experience, it was just like stepping into an alternate universe. It just, it just felt weird. And I don’t know why, but it did.

And pretty soon, I’ve got to make a decision on my VA coverage, my VA insurance, because I can’t afford to keep my VA insurance and my private insurance. Having VA insurance causes the cost of my private insurance to be such that it’s just not sustainable for me. And the only reason that we you know, took the leap and got this expensive private insurance and kept the VA insurance is because the VA does not cover trials. And in order to get the trials, I had to have that private insurance. And I can qualify for the cheap insurance, and the government subsidies, if I drop my VA insurance, which I was very hesitant to do. And I’m still hesitant to do. But I’ve really got to think about this. The VA has been very good to me. As far as medical coverages have gone and medical treatments.

So I would hate to have to, you know, let that go. By the same token, I can’t afford to keep both. And the VA is not going to cover my follow-up stuff from my trials and things like that so all that would be out of pocket unless I pay for this expensive insurance. We’re talking $1,000 a month, nearly, so it’s just tough. Not including co-pays and my percentage of the bills. So I’m gonna yeah I’m gonna have to pull the trigger on that decision here pretty soon. Anyway, I just thought it was weird that I would have that weird feeling about the VA, like I had about Froedtert when I first started going there.

But, you know, I guess that’s just part of the game. I’m very happy that I’ve gotten into this trial. Things have seemed to have gone very well. I’ve responded very well to it. I feel very blessed that I had this opportunity. Yeah and I thank God that he’s allowed me to experience this, And the new folks over there at Froedert and just hope that His will is for me to stick around for a little while longer, because I feel like I’ve got more stuff to do here. Thanks for following that stay blessed. That’s it.

Transcribed by https://otter.ai | Featured image – Photo by Justin Campbell on Unsplash

Additional: I totally forgot about spiking a fever when the family was visiting in June! Almost got admitted then too, but was able to get sent home instead, and even though I couldn’t join them except briefly on Washington Island, I was able to spend a night on the Cobia with them. I’ll have to visit them when I’m more stable, hopefully soon!

Ken Ivey

Ken Ivey

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