...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: 

http://curingezra.blogspot.com/2013_08_19_archive.html

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.... 

... 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).

Em

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

Also, Tate got a new toy last night:

... 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

...here 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.

...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!

...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. 

...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