Sunday, October 23, 2011

In the Stillness

It has taken me foreverrrrr to post.  I am so sorry if you were worried, but there is nothing to be alarmed about.  I’ve just been slacking. (sorry)  I wrote this about a week ago, but couldn’t quite wrap it up/couldn’t get myself to click “Publish Post”.   Then I had the following conversation with my sister (who I call Bear).

Bear: You haven’t posted in a while.
Me: I know.  I wrote something, but I just felt kind of…exposed writing it.
Bear:  Isn’t that kind of the point?
Me:….yea…I guess it is.

So I’ve been nervous about posting this, although last week I told you some pretty humbling information, so I don’t know what I’m concerned about :).  But I’m going to post it anyway even though it makes my soul feel exposed, because when I started this blog, I said that I wanted to be as honest as possible mostly for others going through the same thing or who will go through something similar and happen to stumble across this.  And you never know how your story will affect others, so I will put this out into the universe and let it decide what it all means. Enjoy :)

In the Stillness

In my normal life, you know, the one where I am going to school or working full time or interning or doing some combination of the three, I am anxious.  I always feel like I am one mistake away from everything collapsing around me.  Have you ever felt like you had everyone fooled in some way or another and it was only a matter of time before everyone realized that you were a fraud?  That maybe you don’t have it all together.  That you’re not smart enough to be here.  That you have more questions than answers about the faith that you love so dearly.  I have always felt this.  I have always felt that what I outwardly project is not an accurate representation of what happens below the surface.  Because below the surface is utter chaos.  There is a constant battle between who I am and who I strive to be. 

When I am in my normal state I long for moments of stillness.  I long for times when the chaos is quieted and I feel sure.  I need reminders of how faith and community can strengthen a person from the inside out.  And I find these moments early in the morning when I’m the first one awake and my apartment is quiet.  There is stillness in the coffee I sip while staring out the dining room window, when the world is still calm and it feels like God and I are alone.  I find the quiet when I run.  When my mind empties itself and with every step I leave behind another insecurity, another fear that weighs me down.  I find the peace in kind, confident words from someone who knows me inside and out, and believes in me.  When I finally confess my anxiety to a friend and they gently remind me of all the things that make me, me.  They remind me that even if all my fears came true, even if all of my dreams and aspirations failed horribly, they would land softly in the arms of my faith, my friends, and my family, and those failures would become opportunities. 

But this current state is not my normal state.  I am not working.  I am not going to school.  I am not being productive.  Unless you consider completing season 1 of Gossip Girl, productive…  This season of my life is defined by stillness.  I have what I am normally so desperate for.  My mind is calm and quiet.  I’m not struggling to move forward and get ahead in life.  I’ve taken a hiatus from stressing about where I “should” be at 24 in this society.  I don’t really care.  It’s so far from my current state of mind, I can hardly remember what it felt like to be concerned with it.  A hush has fallen over my normally anxiety-ridden mind.  The storm has quieted, and the ocean is calm. 

What’s ironic about this, is that I feel less anxious now, when facing serious health issues, than before, when I was dealing with papers and deadlines and everyday stress. The stakes are much higher now, and yet…that familiar knot of anxiety that normally occupies my chest, is gone. Weird, right?

But maybe not.  My friend’s mom was diagnosed with colon cancer a few years ago and is now in remission.  Her diagnosis came after spending years juggling the stress of being a mom to three kids and very successful businesswoman.  I didn’t know her before, but my friend tells me that she is far more relaxed now, even facing cancer, than she was being supermom.  She enjoys her family, and her life, more now. 

I think what it really comes down to is perspective.  How often in life do you get to tell everything and everyone in life, “You go ahead without me for a bit, I just need a few months off”.  For most people, the answer is never.  And yet here I am, in the midst of such a blessing. 

This is not a statement about how the sky is now bluer and that flowers smell sweeter.  Not exactly, anyway.  I don’t spend my days frolicking through fields and smiling into the sun’s glow.  [Okay sometimes I do the second one…] But I’m still me.  With the same insecurities and curiosities.  This post is more to say that in facing this disease, I have realized that I have no control over how my immune system or my bone marrow behaves.  I don’t have the power to cure myself.  And that lack of control can lead you to two places: the first is swimming in anxiety and panic because no amount of effort on your part will change this situation.  But what I have found is that in situations where you lack control, there is also opportunity to find a quiet place to let go of the struggle and let God handle things.  And in that place, there is an incredible amount of serenity. 

Counts for 2 weeks ago:

            Platelets 12,000 Hemoglobin: 7.9 WBC: 2.7

I had my first and only transfusion since I’ve been home from the hospital.  I had 2 units of whole blood because my hemoglobin dropped to 7.9.  As much as I don’t want to have to get transfusions, I felt much better afterward. 

Counts for Last week:

            Platelets: 25,000 Hemoglobin: 9.8 WBC: 2.9

My energy level is MUCH better now than it was a few weeks ago.  I’ve started going for walks on the path near my house and am feeling pretty good!

Thanks for reading and caring :)


Friday, October 7, 2011

Good Times on Cyclosporine

If I had to name two things that I am most insecure about in my physical appearance, I would say, like most women, #1 would be my weight.  The second would be my combination of pale Irish skin and thick, dark brown hair.  I’m not one of those girls who can go a week without shaving and you can’t even tell because their hair is so light.  I hate those girls.  I’ve got 2 days before I start to look like a man.  Guess what 2 major side effects of ATG are??

Weight gain. And excess hair growth.  SWEET.

Couldn’t I get a disease that made me skinny and hot??  Is that so much to ask??  I suppose it is.  But sometimes if you’re really quiet you can hear the universe giggling at the silly joke they just played on me.  Let’s make the girl who’s insecure about body hair and her weight, fatter and hairier!  Tehehehe.  Needless to say, I am lookin’ like a dime piece these days. 

Oh and it gets better too.  I’m growing hair faster than you can say, “get your hairy self to a beauty salon!”, BUT….my platelets are so low that I have to stay away from sharp objects, and hot wax.  That’s right.  I’m not allowed to shave!  Or wax.  Or even use tweezers.  I can use Nair I suppose but it pretty much sucks and smells like cancer in a bottle because of all the chemicals in it.  So if you run into me at Kroger looking like a chubby hippie with a unibrow, you might think “Wow, she really let herself go…” and I might want to say, “I swear it’s the Cyclosporine, I don’t usually look like this!”

But of course, gaining weight and hairiness are DEFINITELY worth it when it means I get to be healthy and resume my normal life again.  So as much as it sucks, you eventually learn to laugh at it.  And it really is kind of funny, let’s be honest.  At least this time I knew it was coming.  I didn’t get much of a warning the first time.  I just woke up one morning, and SURPRISE! You’re as hairy as a gorilla!  And so chubby it looks like someone inflated you like a balloon!  Good times.  :) But like last time, it’s only temporary.  I’ve finished tapering off the steroids, which means I no longer have the appetite of a line backer and my platelets are on their way up, which means I will be able to shave again (hopefully) soon.  Thank goodness for small blessings.  And family and friends who love me in spite of unattractive side effects. 

Also, if you’re wondering why it has taken me forever to write this blog post.  I am truly sorry, but another glorious side effect of Cyclosporine (which if you didn't know, is the immunosuppressant that I take 4 of everyday), is difficulty focusing.  Basically my brain is mush right now, so it takes me a while to form original thoughts and get motivated to do anything cerebral.  Sorry!  I’ll try to do better though.  I promise!

Counts Update (as promised):

            Last week: 9.0 Hemoglobin, 19,000 platelets and 4.0 WBC
            This week my counts are 8.2 Hb, 22,000 platelets and 2.2 WBC

I’m not quite sure what the up and down means with my counts and honestly, I don’t think the doctors do either.  But my doctor (who’s a genius) says not to worry, so I’m not going to, and you shouldn’t either. 

Thanks again for reading this.  I hope it made you laugh a little and I hope you have a beautiful day!  Oh and GO TIGERS!!!! (we beat the Yankees!!) And GO LIONS!!! (we’re undefeated!) And it’s the home opener for the Red Wings, GO WINGS!!!  It’s a great time to be quarantined in the greater Detroit area :)