Well, Sh*t. How Y'all Doin'?
What would I do in my life right now if it weren't for Leslie Jordan?
Watching videos on Leslie Jordan's Instagram account has become one of my new obsessions. I try to keep up with every new one. They always make me smile. They often make me guffaw. Sometimes, oddly, they've made me tear up.
You can't always tell from someone's public persona what kind of a person they are. Momentary glimpses are really all we get, if that. I choose to believe that he's kind. He has eyes that say that he's gone through an awful lot. They're kind eyes. They're also knowledgable eyes. I'm pretty sure he's seen a lot of what the world looks like when it chooses to be ugly.
And yet.
He still chooses to create videos that share joy. Yeah, I know. It could all be a marketing gimmick. Is likely a marketing gimmick. I don't care. He chose a gimmick that was kind. That tells me enough.
When the world has knocked someone around enough, and they still choose to find joy and laughter and gentleness... that brings me to tears. Thus the odd crying jags when I'm watching his videos, I suppose.
I got some bad news last week.
No. I'm not dying. Not yet. Go back and look at the title of this blog. Look at the dust cloud with fists coming out of it. I'm fighting this sucker. A year-and-a-half? That's nothing. I've got way more determination than that.
I did get knocked back this week, though.
So, we got the results back on the Toddler. Turns out, he is indeed a Toddler. Lymphoma. Not clear cell renal carcinoma.
That's good news, y'all. Renal would've been a real bugger to deal with.
Thing is, though, you remember that analogy of blowing up a nuclear bomb inside of me? Still applies. We did that, then they gave me my stem cells back. Cancer still grew.
That means, more than likely, the cancer's in my bloodstream. Or something along those lines. Look, I never claimed to be an expert on any of this. But let's just go with that explanation, even if the reality is a bit more complicated.
Basically, what they're saying is, we need to go in, do chemo until my cancer goes back into remission, then do another bone marrow transplant. That alone sucks. But it's not that simple. We have to do it this time with a donor. Allogeneic.
So, not only do I have to do that whole stay-in-the-hospital-for-a-month thing again, this time the recovery will be worse. And will probably never end. And may be accompanied by things like Graft Versus Host Disease.
So, some good news. It's not right this second. Before, we were running pall-mall into the transplant because my cancer was super fast growing and we wanted to nuke it all. Now, we have a moment to take a breath. Get a second opinion. Maybe a third.
I'll be going back into chemotherapy, but this time it will be more targeted. More targeted = less sick. Hopefully. Usually. Fingers crossed.
Making things more complicated, my remaining kidney is pooping out. I could spout a lot of numbers at you, but GFR is basically a percentage of how your kidneys are functioning. Mine's at around 23%. No bueno.
So, that's something we'll have to keep an eye on as well.
As soon as my meds clear insurance, I should be starting that process. During that, we'll be exploring anything and everything (sane) that we can. This is not a request for invites to the latest cleanse. I'll be working with my nephrologist on that. I'm not against trying stuff. Also, I'm emotionally fragile right now. I don't want to have to turn friends down when they reach out about this health MLM they're doing. I can't take it at the moment.
As for donors, I have four brothers and two biological children. We'll start there. If it turns out there's no matches there, we go out further on the family tree. Then I make a call for everyone to become a donor. I mean, you should anyway, right? Good juju.
One possible upside here. I have a couple of brothers who haven't gone bald. If one of them ends up being a match, who knows? I could end up with a full head of hair, y'all!
After all this, it would be kinda cool, you know?
-------------------
Next we talk about how few oncologists have a good bed-side manner. It's bad, y'all. Rul bad.
 |
| Hard not to love that face. |
Watching videos on Leslie Jordan's Instagram account has become one of my new obsessions. I try to keep up with every new one. They always make me smile. They often make me guffaw. Sometimes, oddly, they've made me tear up.
You can't always tell from someone's public persona what kind of a person they are. Momentary glimpses are really all we get, if that. I choose to believe that he's kind. He has eyes that say that he's gone through an awful lot. They're kind eyes. They're also knowledgable eyes. I'm pretty sure he's seen a lot of what the world looks like when it chooses to be ugly.
And yet.
He still chooses to create videos that share joy. Yeah, I know. It could all be a marketing gimmick. Is likely a marketing gimmick. I don't care. He chose a gimmick that was kind. That tells me enough.
When the world has knocked someone around enough, and they still choose to find joy and laughter and gentleness... that brings me to tears. Thus the odd crying jags when I'm watching his videos, I suppose.
I got some bad news last week.
No. I'm not dying. Not yet. Go back and look at the title of this blog. Look at the dust cloud with fists coming out of it. I'm fighting this sucker. A year-and-a-half? That's nothing. I've got way more determination than that.
I did get knocked back this week, though.
So, we got the results back on the Toddler. Turns out, he is indeed a Toddler. Lymphoma. Not clear cell renal carcinoma.
That's good news, y'all. Renal would've been a real bugger to deal with.
Thing is, though, you remember that analogy of blowing up a nuclear bomb inside of me? Still applies. We did that, then they gave me my stem cells back. Cancer still grew.
That means, more than likely, the cancer's in my bloodstream. Or something along those lines. Look, I never claimed to be an expert on any of this. But let's just go with that explanation, even if the reality is a bit more complicated.
Basically, what they're saying is, we need to go in, do chemo until my cancer goes back into remission, then do another bone marrow transplant. That alone sucks. But it's not that simple. We have to do it this time with a donor. Allogeneic.
So, not only do I have to do that whole stay-in-the-hospital-for-a-month thing again, this time the recovery will be worse. And will probably never end. And may be accompanied by things like Graft Versus Host Disease.
So, some good news. It's not right this second. Before, we were running pall-mall into the transplant because my cancer was super fast growing and we wanted to nuke it all. Now, we have a moment to take a breath. Get a second opinion. Maybe a third.
I'll be going back into chemotherapy, but this time it will be more targeted. More targeted = less sick. Hopefully. Usually. Fingers crossed.
 |
| Speaking of... the history of that gesture is pretty cool. Check it out. |
Making things more complicated, my remaining kidney is pooping out. I could spout a lot of numbers at you, but GFR is basically a percentage of how your kidneys are functioning. Mine's at around 23%. No bueno.
So, that's something we'll have to keep an eye on as well.
As soon as my meds clear insurance, I should be starting that process. During that, we'll be exploring anything and everything (sane) that we can. This is not a request for invites to the latest cleanse. I'll be working with my nephrologist on that. I'm not against trying stuff. Also, I'm emotionally fragile right now. I don't want to have to turn friends down when they reach out about this health MLM they're doing. I can't take it at the moment.
As for donors, I have four brothers and two biological children. We'll start there. If it turns out there's no matches there, we go out further on the family tree. Then I make a call for everyone to become a donor. I mean, you should anyway, right? Good juju.
One possible upside here. I have a couple of brothers who haven't gone bald. If one of them ends up being a match, who knows? I could end up with a full head of hair, y'all!
 |
| Shut up and let me have my dream. |
After all this, it would be kinda cool, you know?
-------------------
Next we talk about how few oncologists have a good bed-side manner. It's bad, y'all. Rul bad.
Well... crap nuggets.
ReplyDeleteYou seem to be handling it well, all things considered.
FWIW I signed up as a bone marrow donor (via https://bethematch.org/) so I'm already in the system. Highly unlikely I'll be a match to you (since we are not generically related, at least not as far as I know), but I may be a match to someone. And the karma doesn't really care who gets the marrow, ya know?
Keep smiling. Sooner or later, something is going to kill you but I still believe this ain't it.