... 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!

...does discharge equal cured?

I am SO happy to be home. But I still have pneumonia and I will for awhile. But right now - I'm just happy to recover at home. 

Thanks Reed family for decorating

home with Tate, snuggled up in a blanket from Rachel

Unless you've spent an extended amount of time in the hospital, then I can honestly tell you that you have no idea what it is like. 

Being in the hospital, you lose all sense of privacy and independence. This stay, I have 10 leads (stickers with wires) attached to my chest monitoring my heart. One was attached to a box that stayed in the bed (and I could unhook), and one I had to carry around with me (if I got up to go to the bathroom). This stay, I also had a pulse ox hooked to my finger or toe (which measures the oxygen in your blood). Plus, I had a picc line** attached to an IV pole which was then plugged into the wall.

So, I'm in the hospital and in pain - as in seriously spasms in my back, hooked up to a pain pump that administers constant medicine, plus I can push a button for extra. Every time I want to go to the bathroom, I have to call a nurse, get everything that can be unhooked, unhooked, and then roll myself out of bed. 

Luckily, my pain was under control after a few days - but due to the machinery I was hooked up to (to monitor my heart and oxygen, etc), I required assistance EVERY TIME I wanted to get up. Not to mention when I dropped my IPhone under the bed... can't reach that- had to buzz for Erin. It feels crippling. 

**A PICC line is a peripherally inserted central line - it's a small line inserted into my arm, tunneled into a larger vein by my heart. When getting high dose antibiotics or a lot of blood draws, this helps save my smaller veins (which are already pretty shot from chemo).

They diagnosed me with nocardia pneumonia, which is fairly rare (Columbia sees about two cases a year) - but not uncommon for someone like myself who is immunosuppressed. We've been told that this type of pneumonia can take a long time to get over - I could be on antibiotics for months to a year. One of the main issues is right now I am on three antibiotics (two are IV and one is by mouth). 

a fridge on drugs

You must be thinking - you're doing IV antibiotics at home? Well that's an advantage of the PICC - it can stay in and open for a longer time than a normal IV. We have a visiting nurse who comes once a week to check the line. Mom learned how to administer the drugs and we got set up on a schedule which is four times a day (and does unfortunately include one round at 2 am and one at 7 - but it's the best we can do for now). Eventually, a lab in CO that is working on my case, will figure out the exact amount of which of the antibiotics (or exact combination) will fight the nocardia the quickest. For now, we blast my body with all of them. When we know the exact amount, the hope is I can take them all by mouth.

IV drugs in the family room

To answer some questions I've been getting:

• It feels great to be home. 
• I'm still sick - it still hurts to do lots of normal things, like bend down and climb stairs
• I'm going to be sick with pneumonia for a long time, potentially a very long time (months-year)
• The lines coming out of my arm are not the same as the port I had, but are similar

Ultimately though, it's pneumonia and we'll beat it. And we'll figure how how to beat it while fighting the cancer - something I am sure my team is hard at work on. 

And I've gotta say, if you're stuck in the hospital - Columbia is the place to be. I've got all my friends (cough, cough, nurses there) who take care of me, bring me special food, give me back massages and are members of the 'hair tie' club. 

And if you've gotta be home, well nothing is better than company like this...

my little man