Friday, August 30, 2013

... We're in the air!

#teamsweetemily #emilystoseelist

Technology consistently blows mind. Mom and I are in flight and here I am- sending a blog post down to you!

So to recap the last few days, after the transfusion, I've had my platelets drawn everyday. I've gotta say, it's frustrating to be stuck each day but I'm thankful we can do it at the local hospital easily before breakfast.

Transfusion + showed platelets of 75! Not a bad number. However, Thursday, we had pulled back to 62,000. At first I was upset. Where did they go? Well- that's the chemo still attacking and my nurse practitioner, Cindy, assured me she and Dr. Lassman were not surprised by the results.

Did you know- beets help build platelets? Fresh pressed beet juice, day 2.

However, I can't wait until my appointment on Tuesday to be checked again. So, when we land in Vegas, well drop our things off at the hotel and make our way to the Las Vegas lab corp! I was hoping for three full days of peace but never a dull moment. 

Which brings us to right here - flying to Vegas! This morning dad (aka the president of my fan club and truly the best dad on the world) drove mom and I to the Philly airport at 5am. Tate was confused because usually I'll pull him into the bed when I wake up around that time for some snuggles (and attempt more sleep- steroids make insomnia constant). He wasn't happy with all the hustle and bustle so early. 

Upon arrival at the airport, we checked out bag and waited for my wheelchair escort to the gate. Ok, I know, a wheelchair? Well navigating through crowds and security is challenging with my vision and walking and standing that much - exhausting. It was nice to breeze through security (despite the radiation chambers) and not have to struggle to get to the gate and be exhausted. I'm grateful that my parents insisted on this option as I would have been to proud. But, if I conserve more energy now- I'll have it for Vegas!

What was the most fun part of being in the wheelchair? You go down the ramps backwards!

Since I can't ride the roller coaster at NY, NY in vegas anymore because of those little things we call platelets, this is about as close as I'm gonna get! (Good thing I went sky diving when I did!)

We still have two and a half hours. Mom and I watched "The Big Wedding." Definitely recommend. Played a little candy crush and now we are resting. 

So with that, here we come Aunt Cindy (mom's college roommate), cirque "O", dream dinner (yellowtail!) at the Bellagio and .... yell it with me.... CELINE!!!!!


Ps. One cool shot.... 

Wasn't on the list but bonus- Hoover Dam!

Wednesday, August 28, 2013

...what's a platelet?

....what's it mean to you?
.......what's it mean to ME? 

According to google image, this is a clump of platelets. According to my cell phone, they look more like this:
They kind of the color of those toffee candies.

So what are platelets? Platelets make of part of your blood - just like red and white blood cells. A platelet is important because they make your bloog clot. With less platelets, you bruise very easily and bleed from simple things (like using a hard tooth brush). For example, when my platelets are low, I can't shave or do anything that could cause any kind of cuts. 

A normal range of platelets is 150,000-400,000. Most people have plenty of platelets (which is why you don' bruise just because you kneeled down or because someone hugged you to hard - hello handprints). But certain medicine, like chemo, can cause your platelets to drop. This is because chemo targets fast dividing cells. When most people talk about platelets, they drop the zeros. That's why you'll hear me say that I need them up by 100 - I mean 100,000. 

I am on two chemos - BCNU and Avastin. Let's ignore avastin for today - it has it's own complications and risks. But, BCNU (carmustine) can wreck havoc on the platelets. A typical "chemo" cycle is 6-8 weeks, depending on how long it takes your body to recover. The "low point" or "nadir" occurs in weeks 4-5, when your numbers are at their worst. 

So, for the last two weeks, my platelets have been barely hanging on. The doctors like to give your body as much time as they can to regenerate on it's own (every time you pump it full of freebees it says "oh, next time i'll wait for that"). But, at the same time, it's important to start recovering so that we can do another round (I know - RIGHT!). 

When my platelet number went even lower yesterday to 21 (remember, that's 21,000), the doctor decided to transfuse. Today, I headed to the local medical center at 7 am and got rechecked. We're at 75!! Go platelets! Party on! 

That's only the first part though. Now, we need to draw tomorrow and see them go up. Otherwise my body still isn't doing it's job. So tonight, add a prayer for the platelet parade that I need in my blood stream! 

This morning praying for platelets, waiting for some results!

Do you want to help? Luckily, I don't need specific platelets - though you can always donate. BUT my four year old friend Ezra DOES. Ezra is my coworker's son who is undergoing some major chemo to wipe out his immune system and rebuild it (my humbly naive summary). You can check out their blog and, importantly, you can donate platelets and blood right in Midtown Manhattan at Memorial Sloan! All the information is here on the 8/19 archive: 

Onto the fun stuff...

I am so overwhelmed and humbled by the support of my to-see list. I cannot put into words the gratitude I feel towards all my friends and people that I don't even know. 

This weekend, my dad and I were able to go down to Baltimore and see the inner harbor/aquarium. But first, on Saturday, we tackled the most important thing - smashing CRABS:

Love me some Maryland Old Bay and crabs. I'll forsure be shellfish if I can get my hands on more crabs anytime soon. 

On Sunday,  we had brunch at Miss Shirley's. Holy Moly Miss Shirley, I didn't know I needed french toast cinnamon rolls - but I did. 


We met Claire for the aquarium! Little did I know, Claire and my dad were old friends. I was totally oblivious - especially with the "nice to meet you" handshake.

We were hoping to make it out to eat at Phillip's but my energy was just too low after walking through the aquarium. This chemo is a rough one - and I slept most of the way home. Luckily, I see some future trips to Baltimore happening and I am sure there will be opportunities! 

On the docket for this weeken? Well... it's pretty exciting. It is definitely a big ticket item on my list - CELINE DION in VEGAS!!!! I am going with my mom and my "aunt" (my mom's college roommate).

Stay tuned.... 

Tuesday, August 20, 2013

... it's just another stick...

....and unfortunately, the platelets are still low. Actually, only 44.

Needless to say, we didn't do avastin. They'll recheck my blood later this week and hopefully we'll do chemo next Tuesday.

In the meantime, I'm going to try and paint my nails. This is normally not the worst task, but as the eye gets worse (and the steroids make you a little shaky), it becomes harder than Candy Crush level 90 (where I've been stuck, all day).


Ps. Today we had an arm party at the hospital:

Also, Tate got a new toy last night:

Monday, August 19, 2013

... 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!)