Some Call it God, Some Call it Luck

 So I'm still in the hospital...it's been 3 weeks since my routine clinical visit turned to a few days at the hospital. I can't say I'm too surprised, only because I've always been a long recover-er. At this point, we're just waiting for my white blood cells to come back to finish up clearing out the infection. So that's the hold up...pretty exciting right? It's not. As much as I love chilling hard and doing nothing, 3 weeks seems to be a bit much, and I do miss Mikkel. So no exact word yet of my release into the wild, but I'm ready for when the say go.

In my last post I couldn't remember the name of the extra testing that they did, but now I do. It is called a Karius test. Just wanted to get that term out to you like I said I would.

Anyway I was speaking to a nurse today and we discussed how patients have unfortunately passed because their Leukemia, specifically the acute type, AML or ALL, were caught too late. It usually presents itself as an ongoing cold, with some weight loss and night sweats. And a lot of people, especially the young folk don't think much of such symptoms other than being a cold and then just taking the cold medications. I was one of them. I took a bunch of COVID tests, and after they all came back negative I just had a steady diet of Robitussin, cough drops, and Nyquil. I remember having to drop off Mikkel to his grandparents, or have Stefan do nights and morning because I wasn't feeling well. I actually look back at my phone and see pictures that I was taking with Mikkel and knowing that at that time I was not feeling well, but not having a thought of this is where I'd be. Kinda sends chills up my spine. But all I was thinking at the time, is that it's just a cold that I need to break.

We were even supposed to go to Jamaica within just a few days of my unexpected hospital visit. I even expedited Mikkel's passport for that trip. I kept saying that maybe it was my body just needing a break from being a new mom, or quite simply a cold. and then the Jamaica trip would be a nice break. Even my knee was swollen at the time, and we just talked about getting a wheelchair. But it all came down to my knee getting pretty bad and sprouting a fever of 103/104. 

And now we are here.

As I am replaying my memories of my initial diagnosis, I keep thinking how lucky we were for things to have played out the way they have. Of course my current situation SUCKS! But it could have been much worse.

Hear me out...

We are lucky that we moved to Orlando before this all started, where Stefan's folks and my folks are close by to help when needed; we are lucky that my knee and fever showed up when they did because I would have gone on my merry way to Jamaica and I just don't want to think what would have happened if we went down that road. I'm lucky to be responding so well to the medications they have given me, and with my relapse, I'm lucky I went back into remission.

Now, I use the term lucky, but truth is I believe in God and know it's more than just luck. I'm not here to preach in this post, but just saying that with path I've been down from my initial diagnosis to now, I don't feel like I'm alone in this. I mean in a spiritual way...I'm definitely not alone in this Stefan has NOT left the hospital for more than a day! 😩 lol!

But seriously all these things that have happened, all the little road blocks, I've ended up finding a way around them, and I can't say for sure that it's all luck. That said, I don't believe in "praying the sick away", but I believe that these doctors have been given the tools and talent to help cure patients.

Sure some days I have "less faith" than others where I question more because I'm scared, or I'm a little more angry at Him, like a kid at a parent because I'm frustrated at where I am, but that's just part of the journey. I have found that it's the tough times where you have "less faith" that you need to pray more.

I was praying at one point for a sign that I was going to be ok, and kinda stopped praying for that specifically because I didn't see any, nor would I have know that I saw one if it hit me in the face. Then I just happened to be thinking back. On my initial visit, and every single hospital visit since, both here and MD Anderson, I was asked about setting up an advanced directive. I keep saying yes, not really because I WANT to fill it out, but I figure it would be good to look at if nothing else. I haven't seen anything to do with any advanced directive yet, and I realized that probably was the sign that He's not done with me being here yet. 

And talk about praying...when I relapsed, we prayed for a miracle...and it happened I went back into remission. The doctors said that they haven't seen a patient in my situation go back into remission just based on the two medications that I was taking.

I do often get scared because even though I feel like God is with me on this and my prayers are being heard, I still never know what will happen. I just have to roll with the punches and know that Big Man is with me.

So yeah, I guess that's my little "sermon" and it all came from a discussion I had with a nurse this afternoon.

I'm just waiting here for this infection to clear out properly, and so I can get more chemo and then some booster donor cells!

Welp, I hope you guys have a great evening. Stay awesome!!

Back in for a "Quick" Hospital Visit!

 On Monday Feb 27, I went to the clinic for a routine appointment where I get my labs checked, and if I need anything like a blood transfusion I just get it done there. So that day I needed a platelet transfusion which is totally not out of the ordinary. I've received them several times before, no big deal.

Now, what could happen is that patients can have an allergic reaction to these transfusions. Not to say they are allergic to the platelets and can't ever get them, but for some reason there's something about that specific bag that can cause a reaction. That is my understanding at least. I never really paid attention to all that because I never needed to. Anyway! I got the bag and shortly after started to have some small groups of hives, and then a little bit of the nose drippies and the tired eye feeling you get with allergies. On top of all this I also got a fever, which can also be an allergic reaction to a transfusion.

Let me take a quick pause right here so that I may explain the whole fever and immunocompromised body here. While in this state of a compromised immune system, patients are encouraged to take their temperature throughout the day. Rule of thumb is at least when you take your medication. What we, the patients, are looking for (or not looking for), is a temperature of 100.4 degrees. When that happens, we call the clinic and then head over to the ER so that we can get checked out because it can be a sign of an infection.

Ok, back to the clinic...

I had the hives, and the nose and eye issues, and then the fever. All of what was aligning with the run of the mil allergic reaction. But because of the fever alone, I had to be admitted. And because of the fever alone I was having vials filled with blood so they could use them to grow cultures to see if there were any infections. Before we were transported to the ER, the nurse who was taking care of me mentioned that she didn't think the fever was related to the allergic reaction because my temp was kinda high before everything started, though not a fever. And she was sooooooo right!

I got admitted and then ran a fever on and off, but mostly on for 48 hours. Most of the time I felt like I didn't have one so it wasn't a state of me feeling off or anything. I was just "relaxing" while I was just waiting for the fever to break and then I could see if there were any cultures so that I could go home,

So now with the cultures, they are looking for an infection my body may have picked up. That way the doctors can ID the damn thing, and then give me the right drugs to get rid of it. The plan was that the cultures would be back in 72 hours. So then I could go home around Thursday/Friday. Then with the timing and all, I was due for another bone marrow biopsy...so then my doctor said that since I was there they should just keep me til Monday so I could do the biopsy out of convenience. Which, I do hate being in the hospital, but it really is more convenient getting an appointment set up as an in patient than as outpatient.

So that Monday (3/6) is rolling around, nothing is still coming up on the cultures which is good, but bad because additional testing has to be done. So, they drew blood on Friday (3/3) for another test that I will have to get the name of, because I can't remember it right now, but it had to be sent off to CA and then the results wouldn't be back until Wednesday (3/8). So then we were looking at a busting out time of Wednesday. So by Tuesday the results came back and from CA as well as all the additional testing such as CT scans and sonograms for blood clots and the results showed that I had a bacterial infection from Klebsiella. The CT scans showed what I thought were two ingrown hairs as the infection site.

You might be thinking how I could possible do that. Well, my hair has been coming in, and they really did look like two in grown hairs. during the hospital stay the infection reached it's peak and they were clearly not two in grown hairs, but things have settled and I am getting back to normal.

My biopsy results show that I'm still in remission! Which is a huge relief. I also did a lumbar puncture to check if there was any cancer in the spinal fluid, which sometimes happens with AML, and that came back clean...so all good news.

With all that said, it is now 3/10, and I have no idea when they will release me back into the wild. they are still waiting for the infection to clear up some more, and waiting for my counts to come back up so I'm not tooootally vulnerable.

I miss my little one very much, but I have to keep in mind that I'm playing the long game for him and my husband, so staying positive and thankful that I get to video chat him every day and that he can come visit me...and also thankful that my husband stays here with me every day. I keep reminding him that I don't mind if he goes home to sleep in a real be but St. Stefan has refused to leave me alone.

That's what I got today for my "quick" hospital visit...stay awesome on the outside everyone!