... 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!

...is your brain made out of mush?

I'm turning into an old woman. Already! I have started making lists to remind myself of things I need to buy. Currently on my list: slippers, rubber gloves, face wipes, milk and... damn I don't have the list in front of me and I can't remember anything else on it.

It's been a long time since I updated, but I've decided I'm going to work on being better about that. I have a lot to say. At least I can provide commentary and maybe help someone who is newly diagnosed.

Next week, assuming my platelets cooperate, is chemo week. I do 5 days on, 23 days off. I was supposed to be on Temodar last week but my platelets were too low (34,000!).

Advice of the day: Get a good wig. It makes you feel like a super star. Human hair makes all the difference. I have two, Annabelle and Sasha. I love them as much as you can love an object that represents what you're going through.

Ps. this summer when I was home for radiation, I painted that table in my picture lime green!

...I can see a lot of life in you.

(title is from "The Dress Looks Nice On You" - Sufjan Stevens)

This is my everyday. We drive 1 hour and 15 minutes to get to radiation, including crossing the GW bridge (view of New York City). Radiation isn't too bad so far, but my hair is expected to fall out starting next week. It is supposed to fall out in patches wherever the radiation enters and leaves my brain. I almost wish the entire thing was going to fall out as opposed to having to buzz it and have some "good spots" and other bald spots. Either way, this is traumatic. I am not prepared. 

Telling me "It will grow back" doesn't help. I know it will grow back. But it will grow back at different speeds, in different textures. And like I've said, what if I die before it grows back! I know it's morbid but I don't want to think that I would never have my real hair again. 

Last weekend we went to see Wicked (which was amazing). We ate a Japanese restaurant first and they had this awesome fish wall. You could see through it to the reception counter of the hotel next door. 

Next month I am moving into my new apartment (see above!) It is prime east village location and I could not be more excited. It's also only 2 blocks from my gym so I can definitely lose all my steroid weight (decadron, I hate you). 

Overall, things are good. I am about 1/3 through treatment... 

Keep Calm & Carry On

Emily

...automated telephones never understand what you want.

Quick rant.... why, oh why, when you call the insurance company does the automated voice go through 1000x prompts to then transfer you to a live representative who then needs your social, name and birthday all over? It's so frustrating. Today I called and they asked what I wanted and I said "Care and Notification" (a department). She said, "okay, an upcoming procedure." This went on 2 times. Unbelievable.

On the bright side, my insurance company approved my wig up to 500 dollars so I am going to a place tomorrow!

Also! My two future roommates found a place. I am going into the city super early to see it before radiation. Cross your fingers I like it as much as them!

I'm about 1/3 through radiation and still feeling fine. Chemo too... just a little tired but nothing out of the usual. Attitude will help get me through this.. just like the poster from WWII.

...you hate drying your hair anyway.

10 Reasons why I will be sad when my hair falls out in the next 2 weeks:

1. I have gorgeous blonde hair. It's longer than my picture. Prior to my stint in the hospital it was even longer...
2. ...I was in the process of growing it out. 
3. I think I look better with longer hair
4. I don't want to be fat (that's steroids) and bald
5. What if it never grows back the same?
6. What if I die before it grows back? 
7. Once I had a really awkward short hair cut. I am looking forward to the "growing in" process even less than the falling out...
8. Speaking of.... hair falling out is gross
9. I can't curl my wig
10. I have a great collection of hair accessories and I don't know how they will look with a wig

10 Reasons why I will not be sad when my hair falls out:

1. No "bad hair days"
2. No drying hair (with mine it takes 15 + minutes)
3. Save money on expensive hair products
4. I look good in hats
5. Don't have to pay for hair cuts or highlights
6. I can pick out whatever kind of hair I want...
7. ...in theory I can even have multiple hair styles
8. I like the feel of a buzzed head
9. I've heard (okay read online) that showering bald is cool
10. I can get ready in less time and look better

Con - Britney rocked bald.