Saturday, October 26, 2013

... you didn't die bald!

When I first got sick, I published a list on my blog of concerns. One of them was what if my hair doesn't grow back and I died bald. It was a silly, but very real, concern. I'm pleased to report that my hair is shoulder length and not only did I not die bald but now I'm fighting, with medium length hair!

Fighting. That's the key word for this post. It feels like every day is a ton of work. Two week ago I had biopsies done on my right optic nerve, the tissue and the fat. Thus far, they confirmed what we already knew - tumor.

Team Sweet Emily recovers from eye surgery 

The doctors are working on a plan for how to treat this tumor because right now they are not comfortable doing chemo/etc with the pneumonia.

Speaking of pneumonia, who KNEW it was so much trouble! Not me. The antibiotics are reeking havoc on my body (making me sick to my stomach - can't keep anything down) and in combination with the eye pain, I've been hibernating in my room with the exception of doctors appointments. 

A big step this week - Tate is now sleeping in his crate downstairs. He used to get to sleep in my room, and then around 6 or 7 am, I'd pull him in bed for some snuggle time. Well, Mr. Demanding starting barking and whining progressively earlier and earlier. We were waking each other up and I wasn't sleeping. So, he's slept downstairs successfully the last two nights. 

Plus - we are redoing my 'new' room. (I'm moving down the hall). Mom is painting it - with one wall striped, and I bought a new bed spread! Don't need Tate getting on that (or my faux fur blanket)!


Finally, I'm so pleased to say that my friend from across the pond, Tom, sent me the most WONDERFUL bathrobe (which I had previously mentioned searching for). It has waffle on the outside and terry on the inside - it's SO warm. (I'm actually laying under it now).

It's interesting that week by week, priorities change but the goal is the same - control the pain, get better. It's just what I seem to be fighting is changing and increasing all the time. So for now, hopefully I can adjust to these antibiotics. They switched me off of the one that was causing a lot of issues and I am hopeful once it's out of my system I have no problem tolerating the new one.

 I saw the pain doctor yesterday and he was fantastic. Gave me a lot of suggestions and is really working to help control my nausea and changed my primary pain med (which is probably contirubting to me getting sick - the kidneys are't fully processing it). He and dad were actually texting earlier as I am still struggling today.

PS. S2K9 - I went shopping on GAP.com today for some comfy clothes! Definitely a great morning activity. Love to you all.

xoxo
Emily

PS. In exciting news because of the antibiotic change, my PICC line was taken out this week! Hopefully I won't need one anytime soon!


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