and I already have a full-time job. I’m exhausted. Luckily I can do both jobs simultaneously. I’ve learned that a lot of my appointments are mainly just waiting around so I now bring my laptop to get work done in the waiting room or during transfusions.
I’m out of the hospital! And boy is it hard work. Between scheduling appointments and visits with my oncologist, the physical therapist, the cardiologist, labs in the clinic, transfusions and procedures and I haven’t even started chemo yet! Just talking about it makes me tired.
My last day in the hospital was traumatizing. I didn’t sleep at all the night before. I needed a bone marrow biopsy and a lumbar puncture. The bone marrow biopsy was taking longer than I expected and they kept hitting a nerve that would send a shooting firework-like pain down my calves. They finally brought in another nurse practitioner to finish the job on the 3rd try. Luckily she was successful but I’m pretty sure I was shaking by this point because I couldn’t see what they were doing and it just sounded like they were using swords on my back. Between the sounds and the shooting pains, I was beyond freaked out. Then I had a 5 min break to calm down and then they had to do the lumbar puncture. I’d had two already that were a breeze but for some reason, they were having difficulty with this one. They tried several times and just couldn’t get it. Plus they hit the same nerves that sent more shooting pains to my calves. I cried a lot and they called it and were unsuccessful. It was the worst 2 hours ever. I was worried they’d keep me in the hospital another night but they still released me that day. Which might have been a bad idea.
They also cut me cold turkey from the prednisone that day. 29 days on an extremely high dose and then just stopping is insane. Usually they taper you off but they didn’t with me. The doctor warned me that I’d feel pretty bad for a couple days but he described it as a hangover. This, sir, was no hangover. It was MISERABLE. The sharp shooting pains returned to my knees in the middle of the night and my pain killers didn’t work. So they prescribed me something stronger that made me feel super confused and weird and paranoid. Everything was so uncomfortable. I was very irritable and still couldn’t sleep. I think I went 3 days without sleeping. I’d cry in the middle of the night because I was so uncomfortable and angry and sad. I felt like I should have still been in the hospital. My legs and body were so weak I could barely walk. The best way to describe it is extreme discomfort inside and out. My blankets felt too heavy. Nothing could comfort me. I never want to feel that way again.
Luckily after a few days I started feeling better. The prednisone was leaving the body. And I finally slept! It was a miracle.
I returned Monday to finish the failed lumbar puncture but this time they used an x-ray machine to determine the exact spot to go in and weird enough they had been in the right spot when they tried before so we’re not really sure why they were unsuccessful. I was just relieved to get it over with finally. I have another one next week fml.
I’m all moved in to my new house. It’s a mess right now. My bed and TV are set up but the rest is just a bunch of boxes. I need to get it furnished but that’s hard work when you’re exhausted.
I came home to a bunch of cards and care packages. Thank you everyone for all the love. It’s really overwhelming (in a good way).
My face is still very large and in charge from the prednisone. I’m still waiting for it to die down. My hair has started to fall out but not much of it. I still have a fuzzy head. My hands are very numb now and actually hurt most days. They’re super sensitive to hot and cold and the clinic is always freezing. Today I wore Ugg boots in June. That’s how cold it is in there.
Anyway enough of my ramblings… TTFN.