July19
I’m still here. Have I said that before? They started me on a new, very intense medication yesterday that should attack and kill my infection and fevers. Of course I’ve heard this before, so while I am optimistic, I’m not jumping up and down until I actually see some results like less fevers. This is an IV-only medication that comes with side-effects such as … fevers (can’t get enough of those), intense chills and shakes which I had the pleasure of experiencing yesterday, and it can also do a lot of damage to your kidneys so they have to give you lots of fluids both before and after the dose. I had those shakes before a few times when they gave me platelet transfusions. They give me another IV-medication that gets rid of them almost instantly. But they can also pre-medicate me for them to try to avoid the shakes altogether. Apparently everyone has the side-effects with this particular medication because it is so strong. That is good because it means it should do the job, but it is also why they wait to use it almost as a last resort. The good news is that with each subsequent dose, your body adjusts and the side effects diminish. If this is working for me, they can send me home on it and a home nurse can administer it. We’ll need to wait another day or two before we know that.
On my agenda for today is another liver biopsy. I guess they can’t get enough of poking and prodding me. In all seriousness, they want to look at another sample of the infection just to make sure of what’s there – I guess it’s their way of double-checking what they’re dealing with. Unfortunately for me, it is quite painful and I can’t eat or drink all day until the test is done.
Mentally I’m in a much better place today than I’ve been in the last few days. Brian brought the boys down to see me yesterday and my dad, my aunt Martha and my uncle Bob also came. Although I was, of course, running a fever and not feeling my best, it was a really nice afternoon and so good to see everyone. The boys were so well behaved and had a really good time making my bed go up and down and watching the big glass elevators. I feel like they grow each time I see them. It’s hard to feel like I’m missing what they’re doing day to day but I’m so proud of the people they are growing into.
Melly also came for a visit yesterday morning and brought me an awesome sandwich from Panera that lasted through both lunch and dinner. With all of my friends bringing me delicious food, it is getting really hard to eat the hospital food. Today I’m going to try to persuade Brian to bring me some stuff from Whole Foods and maybe I can make it through the next few days and on my way home without having to touch hospital food again. Yeah, I wish!
One other person I must thank is my amazing nurse Roseann (the triathlete) who gave me a beautiful gift of a dragonfly necklace. Dragonflies have very special meaning to me because they remind me of my mom. The dragonfly pendant sits on the string of the necklace and you are supposed to make a wish on it. When the string breaks, your wish comes true. This simple, but lovely gift was not only touching but it lead Roseann and I to have a very meaningful conversation about the struggles I have had thinking of my mom while I go through this journey. I have avoided it, to be perfectly honest, because of fear that somehow I was going to experience the same things she did. For anyone in my family and among our family friends, the irony of my situation so soon after my mom passing has not gone unnoticed and is obviously quite painful to deal with. Roseann was able to help me put those fearful, negative feelings into a positive, very enlightening perspective. She was able to teach me to embrace the idea that my mother is on this journey with me, helping and guiding me and that idea provided an amazing sense of freedom and comfort.
I don’t expect today to be as cathartic, but I am looking forward to seeing Brian and hopefully feeling a little bit better than yesterday – making me one day closer to getting home.