As treatments have gone on (7 of 12 done and over with), my frustration has increased.
Frustration over little things…and weaknesses that I’m not used to. Nobody is perfect, and I know I am rather tough on myself…but this is getting ridiculous.
Sometimes standing up is a chore. My body and my mind are not in concert as much as I’m used to them being.
I say stupid things, or my reactions are super delayed. I feel exhausted physically even when my mind is racing. When my mind is exhausted, my body wants me to move. It’s horrifying sometimes how out of sync I am.
When all is said and done with what I’m dealing with, I have no idea what I’m going to be like afterwards. That scares me too.
I can’t multitask like I used to. I could have 10 tabs up in Firefox, read my feeds, talk on AIM, have a phone call, and drink a coffee all at the same time. Right now, a phone call alone is taxing. I hate it.
I know I could have it worse, I don’t want to complain. I just want to chronicle some of the things I’m going through so that others who might be going through it too don’t feel alone. I have to come to grips with the fact that I am sick. I have things going on in my body that are beyond my comprehension at most times. I’m not in denial, but I do my best to not think about it.
Not thinking about it is getting harder and harder.
My little sister Casey was just 21 years old when she was diagnosed with an aggressive form of leukemia. Within three weeks, the leukemia claimed her life. Casey had a lot going for her - bound for Teach for America after graduation, she was working on her psychology thesis and volunteering at a local animal shelter. Everyone who knew her called her “traveling sunshine.”
If Casey had lived through her time in ICU, she would have been a candidate for bone marrow donation and was fortunate to have my two younger sisters as matches. A lucky 25 to 30 percent of patients have an eligible family member with compatible tissue. For the other 70 percent of patients, however, a compatible donor must be found elsewhere; tissue type is inherited and so a huge factor in compatibility is ethnicity. The makeup of the six million people on the national registry is less than 10 percent each African American, Asian/Pacific Islander and Hispanic, and 75 percent Caucasian.
On September 9, participants at the Blame-A-Thon will have an opportunity to make an enormous impact in the life of a stranger by registering for the national donor registry through DKMS Americas. Joining is easy - it takes a few minutes to fill out a registration form and swab the inside of your cheeks. This buccal swab is tested in order to determine your tissue type; a successful marrow transplant requires the use of compatible tissue in the hope that the recipient’s body will accept it as its own. And joining the registry is FREE.
The Blame-A-Thon is a chance to make a tangible difference in the lives of people battling cancer. They are your friends, your coworkers, your parents, and your siblings. And one cheek swab could give them a chance at recovery. Wouldn’t you want someone to do the same for you?
For more information about bone marrow registration & donation visit dkmsamericas.org Bone Marrow Registration IndyHall 7am - 12pm
On Saturday and Sunday, I was given the honor to speak at the LIVESTRONG Philly Challenge Dinner, and then at the LIVESTRONG Philly Challenge itself.
Whew. Who knew cancer made you so busy?
I joke, because well…I can. And it keeps me somewhat sane.
In all honesty and sincerity it was a week that stands out as the most amazing and rewarding in my entire life and career for many reasons. I was able to meet so many cool people and hear so many amazing personal stories about how Cancer has affected people that we care about so dearly.
It made everything clearer than it already was. I am on a path, and I am meant to do what I’m doing with BLAMEdrewsCANCER.
And it’s also clear that this world is made up of so many wonderful, smart, and talented people who help each other.
When you send the #blamedrewscancer gift, you’re making a donation to LIVESTRONG to help fight cancer. 100% of the proceeds are donated to the organization as part of Drew’s campaign to raise money for LIVESTRONG.
TwitGiftly lets you send virtual gifts to your friends on Twitter. We hope that charity virtual gifts can be a great way for non-profits to raise money (just like rubber bracelets were a few years ago). Here is the link to the gift:
We’d like to extend our continued thanks to National Mechanics Bar & Restaurant in Philadelphia for supporting us as we kick off our 9/9/09 event (9+9+9 = 27 days prior to the event, get it?).
Originally built as bank in the 1800s (Mechanics’ National Bank), it housed a number of different businesses over the years until it was revived in 2006 as the bar and restaurant we know today.
They’ve got great food (their weekend brunch is a must), great beer, a nice schedule of weekly events (karaoke, quizzo) - and we’re proud to be winding down, counting down the days to the epic 9/9/09 Blame-A-Thon within their walls.
You are blaming my cancer for anything and everything.
How do I know this?
Because now over 10,000 people have freely and openly tweeted and said the word cancer.
That alone is something. Something huge and something powerful, and something I am honestly proud to be a part of. Because I’m just a part of it.
Well we have a new part of it. They’re a company called 23andMe.
23andMe’s mission is to be the world’s trusted source of personal genetic information.
23andMe is now a partner of #BlameDrewsCancer. They want to put your health information and data in your hands. While this is not meant to be preventative in any way, meaning you should still see your Dr’s and get checkups, and if you have a lump like I did…you get it checked out. But It is a step. A step in a direction that may sound scary. Knowing genetic information about you and your health. It’s not scary, it’s empowering.
I took the spit test. I am going to share my experience through videos. And when I get results on things that may be tough or interesting, I’m going to share those too.
No, not because you don’t know what you’re going to get. More like, what you’re not getting out of life right now.
Remember being a kid and how the little things in life made you so super happy? Getting a pack of baseball cards and opening them with a friend. I’m sure girls do different things like that…but since I’m not a girl, I imagine it’s a hairdressing PJ party or something. Doesn’t cost a bunch of money, and the return is so great. The joy is pure.
I’ve noticed that older folks pick up hobbies, such as playing Bingo, or sewing, or going to ballgames. Little things that give them so much enjoyment.
But somewhere in the middle of life, we lose that. It turns into buying the biggest houses, the most expensive cars, crazy gadgets that make sounds when you tap it. I fell into this. The enjoyment I get out of such things is next to nothing anymore.
Right after chemo yesterday (6 of 12), Sarah and I went to 711. They had packs of baseball cards at the counter. I can’t remember the last time I bought a pack of baseball cards. They’re more expensive than I remember, about $2.39. But I bought a pack.
I was excited to open them later, and see who I got.
But there were 2 boys outside with their bikes. So Sarah and I walked over to them and I asked them if they’d like some baseball cards. Their eyes LIT UP. They said “Yeah man, sure wow”. Over a $2.39 pack of baseball cards.
Where did I lose this happiness and zest. I want it back.
So we opened the pack and I said oh “Jimmy Rollins!” and one of the boys said “I call that one!” We laughed and I went through some other players I’ve never heard of. I saw a retro Steve Carlton card.
I called it.
It made me happy. And I got that zest back.
I gave them the rest of the cards to divide between them and we went on our merry way.
Life should be like a pack of baseball cards. Happy, unexpected, a treat, and not something to fill some void you have. Nothing excessive or ridiculous.
So as you know, I go “raw dog” on this cancer stuff, as my homies say back in the hood. (Raised in Eddystone, PA in case you’re wondering)
Raw dog it is.
This thing is 99.9% mental. Stay positive, feel positive. But hot trash on fire, sometimes I feel like that .1% has gotten to me. Emails look the same, days look the same…minutes tick slowly. It feels like prison.
The phone rings, and I want to jump off of a short roof that will maybe stub a toe to show that cancer how much I hate it.
Cancer is a douche, though. And doesn’t care how I feel.
When I’m down, I can feel my body fighting the war. I can feel every cell being killed off. Its hell sometimes. But that’s just sometimes.
A few days ago, I almost reached a breakdown point. A point where for the first time I said “This FUCKING sucks”. Not that I haven’t known it sucks…but it’s the first time I said it out loud.
But that in and of itself was kind of good, right? You can’t bottle EVERYTHING up. As hard as I try to, the harder it gets to do. So ya know what? Let that .1% out sometimes. Yell, cry. Scream at the cancer. Punch a pillow. Curse at it. Spit on it (as long as nobody is close by). Do what YOU need to do.
I’m getting better at this. But once you let it out, it feels like you plugged in your iPhone overnight and you’re all green.
We are working so so hard to do great things along with LIVESTRONG, and you get it. You totally get it. Not only that, but if my cancer isn’t in the corner crying somewhere, I’d be shocked. Can you imagine what it feels like to be blamed for 20,000 things and not be AT&T? (Sorry Megan and Timothy, I <3 u)
This week was not my best week. Chemo #5 was on Tuesday. 7 more to go.
It whipped my butt a bit, but I’m back to about 60%, which is my new 100%. Emotionally, I was wiped. But you helped quite a bit with the tweets, the calls, and the support. You have NO idea how big you guys were this week for me. No words can explain it.
All I can say is moving forward and beyond, the #BlamedrewsCancer team will take all of these experiences and repeat it for those of you who need us. Over and over, and we will never go away. Do you need a pick me up? Want to chat? Call. No questions asked. (623) BLA-MEIT.
Yep, thats right. I’m just the guinea pig. Can’t share tons of details yet, but big things are ahead.
So back to the question I get the most…”How are you feeling?”
I don’t know, since I have nothing to compare it to. I have been very lucky in my 29 years that I haven’t gotten sick a lot. I had the flu ONE time. I had gastric bypass surgery in 2005. I always come back better than ever.
This time its different. After chemo I kind of just get back to managable. It’s frustrating for me, but I’m getting used to it. Used to limits, used to taking care of myself and looking out for myself. Sounds goofy I know, but it’s definitely a good learning experience.
So, how do I “feel”. Well, I have likened the feeling of chemo to swallowing a hand grenade, except I wasn’t able to choose when the pin got pulled. I have never done such a thing, so I guess that’s not a fair assessment.
It feels like war is going on inside of my body. I guess, because it is.