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!!
No comments:
Post a Comment