Got a short one here today, but I figured it’s been long enough since the last update that people are curious with what’s going on with me.
Down to 2
For the last 2 weeks, I’ve only had to go into the city twice a week, instead of three times a week. So that’s made it easier on my parents and I, which is good news. Additionally, the last two times I went, I didn’t need to get any transfusions of any kind. That’s another good sign. 2 weeks ago Dr. Barker reduced my cyclosporine dose, which is the anti-GVHD medication that runs havoc on your kidneys. Well, with the reduced dosage, my kidneys are able to process more magnesium, which keeps my electrolyte levels more towards normal, which means, no IV drips for me. Yay! I’ve also not needed hydration since starting the budesenide (steroid), so all in all, our visits have gone from all day affairs (leave the house around 7:45am, get back around 2), to slightly shorter, morning affairs (getting home around noon or slightly before).
All of this is pointing me towards thinking that I might be allowed to move back to my own apartment soon. I’ll miss Che Lanza and it’s 5 star accommodations, but there’s just nothing like having your own space. No matter how comfy you are in a foreign spot…it’s just not yours, and I think that’s a significant thing. Also, I have to say, having your entire living space be one floor, and having everything near each other, is something that I definitely miss. Two massive flights of stairs between the kitchen and my room? Less than fun. At least now I’m strong enough that I don’t feel like I’m going to fall over the railing when I go up the stairs.
How am I feeling?
The most frequent question I get, for obvious reasons. So far, I’m feeling as well as one could, given the 37 daily pills, assorted random side effects from said pills, and general lack of activity for the last 2 and a half months. The big news is that my CBC numbers are all finally high enough that my doctor approved Excedrin as a pill I can take for headaches now, and she also approved Imitrex for migraines. Good thing, too, because I got a monster migraine last night, and had to do the full dosage of Imitrex (which is a drug you absolutely do NOT putz around with).
Other than the headaches, I feel good. I can walk around fine, my joints are all mobile (this is a concern, as GVH often targets joints), I haven’t gotten any rashes or infections. I think the biggest issue I have is dry skin, which I normally get every winter, but apparently just about every drug I’m on exacerbates the issue. Could be worse.
What’s coming up?
From what I can tell, day 100 is when some/most/a couple of my restrictions will come down. I think that’s when they will really start to taper off the anti-GVHD meds (which are the ones that are immuno-suppressant, which is why I can’t be around big groups of people). As the title of the post suggests, I’m on day 84, so a few more weeks and maybe my life will start normalizing. I see Dr. Barker this Friday, and I’m going to ask when I can expect to get back in the gym, and when I can start hanging out. And most importantly, when the hell I can eat at a restaurant again. It’s been fun cooking with my mom, but man, it’s a lot of work. And I’m not even supposed to clean, so I don’t even do half the work.
On February 8th, my hiccman comes out. I’m not as excited for it being removed as I was for my PICC coming out, because honestly, I don’t really mind this thing. I only have to flush it twice a week (which is really once a week, because the visiting nurse that changes the dressing once a week flushes them for me). I don’t notice it if I have more than a tshirt on. It doesn’t really get in the way of anything. I only really notice it when I’m trying to sleep, and even then, it’s not that big a deal. But it will mean showering will be much easier, and I might even be able to convince myself to restart all my daily routines and try to get back into a normal rhythm.
I made buffalo wings the other day, and I learned how to make them so that the skin is like extra ridiculously crunchity and crispy. The secret is that you cook them in low temperature oil first (250 degrees, for 10-15 minutes, depending on the size). Remove them from the oil, let them cool. You can even freeze them at this stage, so you can pre-prep them days or weeks in advance. Then, when you’re ready to serve, pop them in 400 degree oil just until they brown up, and you have perfectly cooked, amazingly crunchy wings. Toss them in your favorite hot sauce and you’re done.
I’ve watched a ton of shows and read a ton of books, but I lately got on a kick of Newsroom on HBO, and I have to say, it was pretty good. They weave in real stories, and show how the media isn’t helping us become informed citizens. It’s not thrilling like Dexter, but it’s an interesting show that anyone interested in politics or broadcasting should check out. The acting is superb, too.
And that’s about it! Until next time, I’ll be sitting around, waiting in my parents’ house, reading and watching TV.
Was glad to read the update even though I speak to Mom everyday. I felt it was like a visit…which is something I haven’t been able to do since your return home. We are so hopeful and thrilled that your significant day is Valentines day because I couldn’t think of a better gift from, or to give, my loving Lanzas…keep posting and lots of hugs from Uncle Spoons and I.
I think I miss Valentine’s Day by 1 day…not sure though, haha
yayyyy 16 days to go 🙂 congrats, keep hangin’ tough.
Will do 🙂
that was a great post it sounds like everything’s looking up in up love you
Very happy to know that things are looking up! And very happy for the wings recipe!!! Can’t wait to give it a try,
Glad to hear things are moving ahead smoothly. All the best!
Thanks! Hope all is well in your world as well 🙂