Well it's been up and down the past couple weeks. I had a couple of days with low grade fevers. Coughing a lot, but not productive. So that gave me a sore throat and my voice sounded like a dragon. Lost my appetite for a few days. And that was all before I went out to Cleveland for my hospital follow up.
Went out to Cleveland this week for my hospital follow up. I wasn't really expecting great news, but I wasn't expecting for everything to be way worse! My lung function is down another 9%. I'm now at 40% of normal lung function for a person of my age. What the heck?!?!?! So I have no real news on what we are doing. They took some sputum and blood and they are running tests to see if they can find an infection - virus, bacteria or fungus. I got another round of chemo. Which is good and bad. It's suppose to help kill the bad antibodies in my body right now which is good, but it's killing my immune system even more which is not good and makes me more likely to catch something.
The hardest part is just hearing "We aren't really sure yet." It's too early to tell if the Rotuxin and the IVIG are helping the way they are suppose too. But with my numbers dropping still we have to start looking for another possible answer. That is by far the most frustrating thing. I just want an answer with a plan. This waiting in limbo sucks.
So as I wait for my results back from Cleveland I'll dive back into my routine. Work 2 days a week. I'm so grateful for Brian. He does so much for me. I'm not sure where I'd be without him. He works his butt off for us and then when he comes home he helps me around the house. If I'm not feeling well he takes over everything. He is the best husband. He gets it. He pushes me and encourages me to do as much as I can. At the same time he helps me whenever things get to overwhelming. I don't think he gets how much I rely on him. He is a just some kind of wonderful.
Relationships are already hard. But when you add a chronic terminal illness to the mix, that's really hard. I know Brian had no idea what he was really getting into. But I'm so thankful he has stuck around. With every new challenge we come across - which our first major challenge was 2 months into dating - instead of running away, he steps up in full force.
Here's hoping the holidays will come and go with no major events. I'm scheduled to go back out to Cleveland end of January/Early February. Until then I'm trying to stay as healthy as possible. I don't need my lung function going down any further. Instead answers as to why would be a lovely Christmas gift,