Monday, November 14, 2011 goes everything.

Chemo, round 3 begins tonight. Actually, I can take that little pill anytime I want. I've taken all 5 of the others. I'm already exhausted just thinking about it. But I'm so optimistic.

My platelets are 127,000 (up from a low of 34,000 last week). My throats a little scratchy, but it's hard not to notice every little thing that happens to my body.

I was thinking about my cancer-coworkers today. There are a couple of them. They all deal differently. Some everyone knows about, some talk to me but keep it pretty hush hush. How did I join this club, I wondered today. The cancer club. No one wants membership, but once you join... it's like the mob - you're apart of the family for life.

Sunday, November 13, 2011 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!

Wednesday, September 7, 2011

...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. 

Friday, August 19, 2011

...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

Monday, August 15, 2011 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.

Monday, July 25, 2011

...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.

Thursday, July 21, 2011

... 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. 

Thursday, July 14, 2011

... 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

Saturday, July 9, 2011

...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

Wednesday, July 6, 2011

...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.

Tuesday, June 28, 2011 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. 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.

Sunday, June 26, 2011

... you have a new hobby, cancer.

I was telling my dad how a few posts ago I thought I needed a new hobby. He pointed out that now I have one, cancer. Specifically, cancer and my Ipad. I troll other blogs and forums and sites like it's my job. I make and attend Drs appointments like my life depended on it. Oh wait, both of these statements are true.

I'm exploring raw food. I say that with a complete grain of salt (figuratively)... I just don't have the dedication to be Kris Carr. However, I am mastering the green drink and I am the proud owner of a new VitaMix. I mean, my parents are the proud new owners of a VitaMix... I am just leasing it. Tonight I tried to make banana ice cream but was less than impressed. My mom did make avocado salad dressing that was delicious for our salads at lunch.

Sometimes I make inappropriate cancer jokes or just say things that might make people question if I have a brain tumor (ha, I do). Exhibit a, I was at the nail salon with Katie. She asked what the aerosol that you spray on your nails to help them dry does... as she finds it questionable. I said, "It used to worry me too, but I figure I already have cancer..." - the lady across from me was aghast. Exhibit b, at my first radiation appointment the resident said "hypothetically, if I was treating you for prostate cancer..." I interrupted him and said "oh hunny, if you were treating me for prostate cancer, we'd have other problems..." Yes, I called the resident hunny. He's never really spoken to me at length since.

Well, its 15 minutes away from chemo time. It's pretty amazing to take chemo at home and not have to deal with a port or ivs and a chair. I do recognize how lucky I am. Temodar so far has not been unbearable, however, it did give me awful stomach cramps on day 2. Like, laying in the back of the car on the radiation, moaning cramps. After three calls to the chemo nurses (so wonderful!), an antacid did the trick. I've just been taking it every morning and that seems to help. I haven't heard or found many other people having this side effect but don't think its out of the realm of possibilities.

I am tired tonight. Luckily, I will sleep as soon as I take the chemo pill and miss any potential effects.

Keep calm and carry on ~ Emily

Saturday, June 25, 2011 have an inoperable brain tumor.

Welp, I guess that post in April was ominous.. or just wrong. Your head did hurt that bad.

Shortly after my last post, my dr ordered an MRI which revealed a brain tumor. Inoperable, but surgery was necessary to create a drain for the CSF that was building up, causing really bad headaches and vomiting. After a month of living in the neuro ICU at Columbia Presbyterian, I am home, doing radiation and chemotherapy (Temodar).

The tumor is an Anaplastic Astrocytoma, they think. Specifically they are calling it "high grade."

I'm going to start writing in this blog again as an outlet, and hopefully to connect with other people online going through this journey.

I am treating at MSKCC and Columbia Presbyterian.

Saturday, April 2, 2011

...your head doesn't hurt that bad.

I've decided it's time to begin blogging again. I need an outlet and I need to get back to happier times. It's funny, I know that I am happy now but I feel like something is missing - and I'm working to fill it in. Could it be church? More volunteer work? Maybe a new job? Hard to say... but I'm going to find out.

It's just a short entry tonight but I'll be around tomorrow.

Listening to: Adele "21"