Hey everybody,
It's been a few days, maybe several days, maybe a week, I don't even remember when was the last time I checked in, so I figured it would be a good time to check in and give you all some updates on what's been going on here, crazy stuff, no, not really crazy stuff. Progress, healing, some setbacks, but some good healing too. It's a journey, it's definitely ups and downs, a roller coaster ride sometimes but I feel really grateful to have had a couple good really good days. Hoping tomorrow is another good day and just kind of keeps going on the upslide nowadays.
Thank you first to everyone who has continued to reach out, who sent cards, who sent me haikus. I don't know if you can see behind me, I had haikus that you all sent, I wrote on stickies. And then I use those stickies to form a Christmas tree. So that was my Christmas tree. And maybe I'll take a picture of it too. I can't remember if I've shared it. Who knows? I don't remember. The days here have literally like gone by and I don't know what day it is. Yeah, or when literally things happen, but we'll get there.
Also apologize, I've got a bit of a dry cough going on. Annoying, nothing serious. It's just annoying. It's kind of, I think, a dry cough that I typically get, you know, during the winter months, which is just an annoying little bit to deal with.
So anyway, how have I been? Because that's probably the question that you're asking.
I have been doing overall well. According to the doctors, I am healing...Really great. Faster than they expected. The doctor, one doctor was like, I can't believe you've showered already. Most people don't shower until day plus seven from getting their TIL treatments. And I showered, I think literally...I don't know, the day after I got my tills? So needless to say, I'm very independent, which has been really nice.
I think that's also helped with my recovery. They've definitely given me a lot of credit for having good health, taking care of myself coming into this because they think that that's clearly contributed to what and how I've been healing not just physically but mentally, spiritually that sort of thing which is great. So I am internally, I've been healing pretty well. It's been kind of slow, and I'll talk a little bit more about that.
Externally, I've had some symptoms that have been a little annoying for me. Particularly, I've had a rash that started just kind of in my chest and then kind of developed down my flank. And yeah, a little bit everywhere, which if you've had a rash, you know that it can be pretty uncomfortable. That has gotten much better now. It might have been an allergic reaction to one of the antibiotics that I'm on, so they did some tweaking around with that.
I have also retained a lot of water because they've been giving me a lot of fluids, so I have been pretty swollen. Thankfully today, I am not as swollen. I still feel like my feet are...Pretty puffy. And I have cankles. But it doesn't feel like the other day where I felt like the Stay Puff Marshmallow Man. So, progress.
Let's see, what else externally? Oh, one of the things with low platelet counts is you get like these little, your capillaries kind of bust. So I'm sure you might've had like one or two like little red spots or dots on somewhere along your body. I tend to have those on my legs and certain spots of my body, which just looks, doesn't look great on top of the swelling.
So physically it's kind of like, Whose body is this? This doesn't feel like me. But I have to understand that this is all a part of the process. And I'm trying to be really patient and keep telling myself that my body is pretty incredible and is an amazing thing and is healing and is recovering and can do amazing things.
Anyway, so that's what it’s like externally.
The good news is on the inside, the docs say that my numbers are coming up slowly but steadily. My platelets are coming up too. They're not normal yet, but they're better. They're holding steady.
My neutrophils, which is a big thing that they're keeping track of, which is actually what's keeping me here also inpatient, they had intentionally dropped down to zero before I got my TIL cells. And so now we just need them to climb back up. They were at 70 yesterday. The days before, there weren't even enough of them to count. So yesterday they’re, 70. Today they were over 1,000, which is good because I need three days over 1,000 before I can get discharged. So, best case scenario is that I could be discharged as soon as Saturday, which is great because I thought I was going to be here for a full month and they were like, no, you're going to be gone by the new year for sure.
But again, fingers crossed, any, anything can happen.
For perspective, a normal neutrophil count, they said is somewhere above 4,000. So, you know, 1,000 is still on the low end of things. That's why they want to see at least three days consistently above it. And then, because that just shows signs that they start multiplying kind of exponentially once you get to a certain point.
So all that is kind of the good news.
Some of the bad news was that I had, Oh, several nights ago, I had an epic bloody nose. I've only had two bloody noses in my life. One was at home probably about a month ago. That lasted maybe five minutes. Here, it lasted an hour. And because I was in this neutropenic state, I had really low platelets. They actually had to give me a platelet transfusion that night.
Unfortunately, the next morning, all of my numbers were still really low. So I had to have a blood transfusion. My first blood transfusion ever.
Thanks to those who donate blood, PSA. I used to donate blood all the time before I got diagnosed. And...If you haven't done it, maybe you give it a try. If it's been a while since you've done it, maybe this is a little nudge to go do it. But it obviously helps patients like me. And obviously, and in more life-saving situations as well.
So, yeah. I had a blood transfusion. All that went well. Started to feel better. Christmas Eve came around. My mom and her husband visited and that was nice. And then as the day went on, I kind of really started to not feel great. I could feel myself getting hot but cold. And in the end, I spiked a fever of 102. And that kind of set off the red alarms. They had to draw a lot of blood, do a lot of cultures. They put me on antibiotic, which I've continued to be on for the past several days. Thankfully, that helped.
And on Christmas morning, I woke up feeling so much better. And I have continued to feel better each day since. Today, unfortunately, my platelets, my platelet count was still a little bit low. I'm sorry, my hemoglobin was below eight, which eight is their threshold. And because it was below eight, they needed to do another blood transfusion. So I had my second blood transfusion today. And hopefully that'll be my last one.
And then if all continues to go well, I will be able to go home or at least be discharged on Saturday and then we'll figure things out from there.
So all that to say before this video gets even longer is that it's been bumpy. It's not a straight line in any sort of way and doing my best to be patient. I did have a crying day where I literally just cried in front of my doctor because I was exhausted by everything that I had been going through and what I was feeling and how my body looked and there's so much going on.
But I'm in a much better place now and I'm so appreciative and grateful for the care that I've been receiving here. It's remarkable, these nurses, these doctors, yeah I feel really fortunate for that. I am grateful that I had some family visit, not just my mom and my stepdad, but my brother-in-law visited and we just had some friends visit that I haven't seen in a really long time which is great.
Chris has been here every day um through it all he's seen me in the best and worst conditions and I am, yeah, just, I don't know where I'd be without him.
So, yeah, that's my check-in.
If you're gonna send me anything, don't send it to me, because things take forever to get here. Or if you're gonna send me something, you can send it to my home.
And that's it. Ideally, the next check-in will be not in this building anymore. I will check in when I'm checked out. So thank you all for being here. Thank you for your love and support. Please keep me in your thoughts, prayers, all that sort of stuff.
It's certainly not over. I'm recovering from this procedure, but we still have to see if it works, which we won't know for a few months. In the meantime, it's a wait and see.
So, all right. Love you. Talk soon.
With love and gratitude,
Jess
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