... this is harder than anyone mentioned.

Hi everyone!

Just decided to bring the blog back. It's been awhile - the last time I was here we were talking about wigs and weaves. Well, only wigs. And round three of chemo. Seems like years ago - it was years ago.

Now, flash forward two years - and we're in a totally different ball park. You can of course keep up with my caringbridge that has my medical journal. (See link under contact).

But, we're here now - so I think I'll just pick up where I am. You'll catch up eventually...

Tomorrow I am supposed to have Avastin (a type of drug that stops new blood supply from "feeding" the tumor). My platelets are low - they were only 24 on Friday and after a transfusion, we're not even breaking 45. I may have another transfusion tomorrow.

The doctor will probably check my eyes. It's scary how quickly the left field is decreasing (I'm already totally blind in the right eye. Yes, we believe this is permanent).

I wrote a note to myself about losing more vision:
Pro: You know what to expect
Con: You know what to expect

Some exciting things coming up: going to Baltimore with Dad this weekend to visit my brother and eat crabs! (Yum). Next weekend mom and my "aunt" Cindy (her college rooommate who I'm close with) and I are going to VEGAS! We're going to see Celine in concert, some sharks at Mandalay Bay and the Bellagio Fountains. Now those are things to be SEEN.

I tink this is enough of a post for tonight. It's hard to read the screen so excuse any typos. Maybe this is a silly question - but has anyone else lost vision? Lost a sense? How did you deal? It's very isolating because I look fine... (see proof!)

xo
Emily

...what makes you a New Yorker?

1. The Ability to Get a Cab in the Rain

• Level of Difficulty: Difficult
• Trick: Walk up to a block where other streets/aves merge and pray, pray pray
• The harder it rains, the worse this will seem
• Walking over avenues will seem like a good idea but will rarely give better results

2. Knowing appropriate rain gear

• Level of Difficulty: Not so hard
• Trick: Hunter Wellies are irreplaceable (at therapy, the girl before me had left the exact same umbrella and boots by the door... aw, cute). I know nothing about her except she is into the same rain gear. Appropriate. 
• When entering a building that has umbrella bags, take two - you might want them later

3. Finding the next best.... pizza, cupcake, person to date, etc.

• Level of Difficulty: Near impossible 
• Trick: Eat cupcakes often. I'm still a magnolia fan. Although, sugar sweet sunshine is actually my favorite. Yep, you could send me some of those, and I'd be really happy. 
• Keep an open mind, but hold on to favorites. 

4. Knowing what subways to take...

• Level of Difficulty: Should be easy-ish (though yesterday while on the R, a girl asked if it was the 6 train....??
• Trick: Download Exit Strategy for your Iphone - you don't need internet and while you're waiting you can stand in the *best* possible spot
• Failure? Being distracted and riding the subway a stop too far. Ridiculous? Making eyes with someone and having them write a missed connections about you. Yep, that happened the DAY before I got diagnosed. 

5. Learning to live in impossibly small spaces...

• Level of Difficulty: Depends on the time you put into fixing it
• Trick: Organize. Figure out what you want where and why and then find a way to make it work. Frequent stores like 'Surprise Surprise' and the 'Container Store' and 'Bed Bath and Beyond'
• Bonus trick: Take your bed bath and beyond receipt to a store in the suburbs and have them price adjust everything... savings: a lot.

Those are the tips, tricks, etc that I have for today.

Today was my first post treatment MRI -- it was good; "stable." I wasn't sure how I felt (I mean obviously relieved, but I'll never be "cancer free" which is so stressful) but I understand that its chronic and we can manage it.... I have to start 5 on / 23 days off for chemo starting on Monday... anxiety...  but the highlight of the day (somehow more exciting) was that then I got the most amazing hair. It's real human hair and it feels so soft, and it just made my whole day. I'm going to write a review of the person I sent to see, because he is a true angel. See picture. 

Say extra prayers. Jesus is the way, the truth and the light. 

...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.