Saturday, December 17, 2011

Put the Gun Down

[So I started writing this on a the bus, but actually I'm currently in my apartment in Pittsburgh, not the Megabus just so you know]

Hello from a Megabus! I’m on my way to Pittsburgh right now, heading back to my apartment, my life, my friends, my old self.  I have this feeling now that I’m creeping closer to the day when I get to resume grad school and working that it’s too soon.  Before I felt like I had all the time in the time in the world to prepare for re-immersion into the real world.  But all of a sudden it seems so soon and so fast.  In a few weeks the semester will start.  I’ll go back to my internship.  I’ll be living in my apartment again.  So much, so quickly.  It’s freaking me out a little.  But that doesn’t mean that I don’t want it to happen.  I guess I’m just questioning how hard of a transition it will be for me psychologically, emotionally, and physically.  Am I going to be too tired to do everything?  Will I get depressed if I can’t?  Will I be able to graduate this summer? 

I don’t know.  I don’t know.  I don’t know.

These are the questions running through my head these days.  Now that I’ve let go of a lot of the uncertainty that came with this course of treatment, I feel more confident that health-wise I will continue to improve and (hopefully) reach full remission.  However letting go of that uncertainty means that I’ve made room for all sorts of new worries.   I’ve let go of being in “survival mode” and now all the emotion and feelings that I pushed aside and told, “I’ll deal with you later.  This is not the time for tears.  It’s a time for strength and positivity.  We have to survive, so hush, you’ll get your turn soon enough.” 

Well here they are.  Demanding attention, having waited their turn.  But I don’t want to pay them any attention.  I don’t want to sort through sadness and anxiety.  I want happiness and celebration.  I want to feel good and light. 

But there is no denying that there is a feeling of heaviness lingering around me.  The feeling that you just went through something big and you need to look it in the eye and give it its due respect. 

The bell has sounded and the hard part is over.  It’s only right that I turn around and take one last look at my defeated opponent, to put my hand on his shoulder and say,

“You fought well, but I fought better.”  And “You’re strong, but not as strong as I am.”  And, “You were tough opponent, but just not as tough as I am.”

But I don’t want to turn around and look back.  What if he has one more hit in him, one that I can’t block?  I want to keep walking running away and never look back.  I used up all my bravery to get this far.  I’m all tapped out.  (Can't someone else do it for me?)

It’s like at the end of a scary movie, after the bad guy is assumed dead, but he always has one last scare in him.  Even if he’s lying on the floor bleeding like mad, you’re still nervous because he’s in your sight and history has proven that the bad guy always has one last murder attempt in him.  So you have to yell at the main character, “Don’t you put that gun down, girl! You know he isn’t dead!”

Aplastic anemia is still too close for comfort and I don’t know if I can put the gun down, as much as I want to move on.

It’s like if you’ve been in a car accident or close call, you know that you don’t relax immediately after you’re out of danger.  Just because the impact is over and you’ve pulled your car over to the side of the road, doesn’t mean you are calmly waiting for medical attention.  The adrenaline will run through your body and you’ll be shaking for a while.  And the next time you get into a car or drive past that intersection where you got hit, that feeling will return, and you’ll remember how scared you were.

That’s where I am right now.  I’m here and I survived.  And I intellectually believe the worst is over.  But I’m still reeling from the impact of the crash.  My hands are shaking, my legs feel weak, and my mind is still spinning with the possibility of a very different ending to this story.  Part of me is not fully convinced that it’s okay to put the gun down, take the boxing gloves off, and walk away from the crash (I’m apparently loving the analogies this morning).  Part of me doesn’t believe that life will leave me alone now because I’ve proven I’m not to be messed with.  I can still feel this disease hanging over my shoulder, holding me back.

Baby steps.  I think that’s key.  I’m not going to be the same person I was when I left, the moment I move back to Pittsburgh.  I think expecting myself to be will only make me depressed.  And unfortunately, as much as I want to bury these feelings, I think I have to let myself feel the weight of what just happened.  I have to let myself be sad, because I am a little.  I have to let myself be disappointed with life, because I am a little.  And I have to let myself believe that I am strong enough to feel those things without becoming them.  Happiness feels lighter when it’s not a mask covering up sadness.  And I want the lightness that I know is to come.  

With heaps and tons of love and appreciation,


Monday, December 5, 2011

The Weird Stuff They Forgot to Mention (plus updates)

So I’ve already told you guys about some of the joyous side effects of my medications (i.e. extra chin, hairy man-legs).  Those are fairly typical side effects with Cyclosporine and steroids, but there are also some things that are not as typical that I get to enjoy as well.  I’ve been gathering this little list in my head for a while so I thought I would share them with you peeps:

1.)  Hand tremors.  You should see me try to put on mascara or paint my nails.  Eating soup is also ridiculous.  It’s like I’m 80 years old.  
2.)  Leg Cramps.  When I’ve been standing or walking for a while, my legs and my feet start to hurt pretty badly.  It makes cooking time-consuming meals and shopping trips difficult.
3.)  Burning hands.  This one is weird.  When I’m cold my hands hurt like they’re burning.  The best way that I can describe it is like the feeling that you get when you come inside after playing outside in the snow for a while.  You know how your hands are so cold but the house is warm and your hands kind of burn but it’s hard to tell if they are really hot or really cold?  It’s like that.  I also can’t tell when things are hot and cold by touching them with my hands.  When I reheat something in the microwave, I touch them with my finger and it will feel like it’s really hot.  Then I take a bite and it’s lukewarm or cold.  It’s so strange.  So I’m not the best person to ask to reheat something for you, unless you don’t mind me taking a bite of it to see if it’s warm. 
4.)  Space Cadet status.  Cyclosporine makes you feel like you’re in a fog, everyday.  It’s probably the most frustrating side effect.  And surprisingly, it is the most evident to me in social situations.  When I’m in a group of people and trying to follow the conversation, it’s a struggle to stay focused on what everyone is saying.  So if we’re having a conversation and my eyes glaze over or start to wander, it’s not because I don’t care what you’re saying.  It’s just that it’s hard to concentrate.   
5.)  Scaley Palms.  Bear says it looks like I’m turning into an amphibian.  When I get out of the shower, my hands look pruney (normal), but the palms of my hands are hard and peeling (not normal).  It’s worse on my left hand.  I have no idea what it’s all about, but maybe Bear’s right?  I’m turning into an amphibian :). 
6.)  Oily skin.  Yay acne! I missed you and was really hoping you’d come back for a visit in my mid-twenties. 
7.)  Flushing skin.  Sometimes I’ll be in the middle of telling a story and all of a sudden I turn pink from my chest to my forehead.  But I’m not embarrassed.  Just hot and pink.  It happens after laughing or crying also.  It’s weird. 
8.)  Long, long hair and long, long eyelashes.  Yes! There is such a thing as a good side effect! The silver lining :)

As a result of the above weirdness, I’ve picked up some habits to adjust to the side effects.  Since I’m a space cadet and have a hard time focusing, when I’m in a group of people I tend to choose one or 2 people to talk to and ignore the rest.  Not trying to be rude, but I just can’t keep track of so many people’s convos. 
When I’m watching a TV program that has a complicated plot, sometimes my brain just completely ignores certain subplots of the show.  For example, if there’s a crime show that has a love story in it, I’ll only follow the love story.  I couldn’t tell you who killed who, but I know who hooked up.  It’s not a conscious decision, it just happens. 
            Shortly after entering a store or house, I know all the places that I can sit down.  I’m constantly surveying for places to put my butt if/when my legs start to hurt.  This is especially true in large stores, like Meijer, Costco, Sam’s Club, any home improvement store, and any store with “Super” in front of it.  (Seriously Lowe’s is like my worst nightmare.  Why is it SO big??)  Summer was good because most stores like these have outdoor lawn furniture on display.  Perfect.  Oh, I’m just trying out this lovely bench swing you have here…no biggie.  Nobody even looks twice at you.  Now that it’s colder it gets tricky.  I’ve had to improvise.  I went to Costco with my mom and sister a while ago and needed to sit down.  I looked for the any piece of furniture on display to sit on…nothing.  I looked by the concessions…all tables were full.  So we wandered down the soup aisle and at the end I found a stack of sacks of rice.  Not too low, not too tall…slightly embarrassing to sit on?  Yes.  Does it matter when you’re that tired?  Not at all.  Sometimes you’ve just gotta do what you’ve gotta do.  So I sat on those sacks of rice.  And it was glorious.

I went to the doctor last Thursday and my counts were:

Platelets: 59,000  Hb: 10.2  WBC: 2.2

Platelets are sloowwwwly climbing and my hemoglobin is the highest it’s been.  Yay!  My white blood cells were down a bit, probably because I had a fever on Monday.  

Thanksgiving was lovely and delicious.  My sister and I completed the Ann Arbor Turkey Trot for the 4th year in a row, although we had to walk it this year since somebody went and got a disease…geeeez what a downer.  ;)

I also enrolled for classes next semester (waaahhhooooooooooooo!!!).  Really no one should ever be that excited to take grad school classes, but I think you can imagine why I am pretty pumped.

Thanks for reading this random update, and I hope you’re enjoying the holidays!