...each day is a gift from God.

Well, sorry about the last mopey post! I did need a kick in the pants.

I'm home in NJ now and I realized that all of these emotions and hard times have less to do with my new apartment, and moving back to NYC and more to do with being scared and not knowing what is going to happen next.

But, for the next 7 days I'm off to the lake with the family for some reading and relaxing. Can't get too much sun because my scalp is INCREDIBLY itchy. Anyone else experience that post radiation? I don't remember it being so bad during radiation but now... my oh my.

Keep calm & carry on
Emily

...you need a kick in the pants.

So this is way harder than I expected. I guess several big life changes at once are a bad idea. I finished treatment, I left my parents house after 5 months and moved into a new apartment in New York... yesterday. While I am super excited about my new location, my roommates, etc... it's just so much harder than I expected.

I feel alone. I feel like I'm going to get sicker eventually, so why try. I feel like I just want to go back to my parents couch and sit with them and watch tv. I tried to watch the shows we normally watch and couldn't even get into them. I tried to play words with friends (something I have done every day since being in the hospital) and I didn't have any words to play. I can't figure out my purpose and why this is all happening to me, and it's just so terrifying and makes me feel so alone.

I'm going to dinner at a very dear friends house tonight and I suppose that will be good. I just want to give up but that is not in my nature at all. I just didn't expect to have this much trouble.

I'm asking everyone - please pray for not only my health, but for my spirit. I know that I will get through this with a smile, just right now it feels extremely hard and isolating.

...these are my confessions.

1. I'm wearing socks that I stole from the hospital. Yes, it is wrong to steal. But the were comfy, they have foot grips, and I don't think they get reused... 
2. I ate brownie batter which is a no-no on chemo. Well, raw eggs are to be avoided if your counts are low, but mine have been good and I figured... it's BROWNIE BATTER!
3. I don't think I've done anything else wrong today.

... we're halfway there, living on a prayer

Hello and happy Thursday

This has been a busy week so far. Kristen and I went and saw Taylor Swift perform at the Prudential Center in Newark (picture above). She sang "Livin' on a Prayer" (is that the name of the song? I don't know, but you know what I'm talking about). This is the LAST photo of me with my hair - I now have very thin hair on the top of my head. I saw on another blog a girl compared her hair to Prince William's hair. I'd say that is just about right. Thin and balding, in patches. I am not allowed to buzz it until after radiation for fear that it would change how snuggly the radiation mask fits. What is a radiation mask? Well, dear readers, see below: 

Everyday that mask gets placed over my face, hooked in the table, and then they radiate me. It's not so bad now that I discovered I can play my IPod. Monday and Tuesday were all Taylor, all day, in preparation for the concert. I average 3-4 songs a radiation session (but then we have over an hour and fifteen minutes to drive both ways).

Yesterday, I had my "halfway" check up with Sloan. So far, everything seems to be going well and my Dr is actually not sure if I will have to do monthly chemo (at least right away). I have my fingers crossed that we won't begin that off the bat. I took the below picture before my appointment yesterday - a giant yellow teddy bear on park avenue. Guess how much it sold for at auction? Yuck.

This week, I was blessed to make a new friend. His name is Grady and I met him while waiting for our car at the valet. I feel certain that God put our two families together, just as he sent me Buttons and Allie when I was in the hospital. Grady is a beautiful and happy child. You can read all about our meeting on his mom, Erin's blog here. Today, she texted me saying they were going to be admitted (but I had already seen that on her facebook). After radiation, we went to the main desk to ask what room they were in because we wanted to offer to get her lunch (we know how it is being in the hospital - parents never want to leave the room incase the Dr comes). As I was spelling her last name for the guard, I glanced out to the valet and a green car pulled in. Now, I only have seen the back of Erin's car once, but I knew it was them. My mom and I went outside and sure enough, there they were. That is what I call divine timing.  Here is a picture of my friend Grady on a quilt that I gave him. Thank you in advance for keeping him in your prayers this week and always as he gains weight and recovers from dehydration.

One last thing - random acts of kindness. Giving Grady my quilt made me feel good and actually helped me wake up that morning all excited, before my alarm clock. But, yesterday, I came home to flowers that had been sent by another Hokie, a random act of kindness. 

I must believe, above all, God is good. 

... just hang in there.

 Radiation days down: 

About halfway there... and my hair started to fall out this week. Sorry that it is all I blog about but it's a huge deal to me. I just want it to fall out where its going to and just get it over with. And yes, those are my hospital bands that I get each day... after we drive over an hour to get there!

My dad and I went swimming the other day and there was a frog. He was not a fan, but I was. I was hoping he was prince charming...

Having cancer is a weird experience. On one hand I want to go back to my life but I know I never really will. My cancer isn't the kind that goes into "remission" - it's just stable, or unstable, but it's always there. It's inoperable, and unfortunately (trivia) the brain does not have cells to come clean up dead cells like the rest of your body. Pretty crazy, I know. So even if the radiation kills the cells, the shape of the tumor that is there will always be there. We'll just have to compare MRIs for changes. But anyway, it's pretty nuts. I'll always have cancer. 

Keep calm & carry on --

Listening to: My Body by Young and the Giant

...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.