Sunday, September 25, 2011

Baby Giraffes and Week One Recovery

I saw this video on animal planet once about the first few days of a baby giraffe’s life.  He was all wobbly and tired all the time.  It was adorable.  His mom would nudge him to get him to try his legs out and he would hobble along for a bit until he got tired, and then plop down, exhausted, and wait for his mom to bring food or make him try again. 

That pretty much sums up the week so far.  With me playing the part of baby giraffe.  I’ve spent most of the week in bed except when my mom is coaxing me out of it with the promise of food or just to move around.  I haven’t felt nauseous or feverish (yay!), but holy smokes, I am tired. 

I thought I should take the time to explain a little bit about what the next month or so are expected to be like.  Aplastic anemia is such a rare disease, that there’s not necessarily a set script on how the ATG will work, which makes it a bit tricky, you see.  In order for this treatment to be successful, the doctors are looking for any sign that my body is producing blood on its own (hence the count checks 3 times a week).  The last time that I had the treatment, it took about 3 months before it started to work.  Of course that doesn’t mean that it will be the same this time.  It could very well work sooner.  It could very well be later.  (And it could just not work, but I like to keep that door firmly closed in my mind).  So every week the doctors will look at my counts focusing on 3 things: Hemoglobin, Platelets, and White Blood Cells.  I’ll try to post every week what my counts are for those keeping track also. 

This week:
my hemoglobin is about 8.5 as of Friday (Normal is 12-15)
Platelets dropped to 13,000 (Normal is 150,000-300,000)
White blood cell count is 3.9

As you can see there’s a long way to go here, but as far as I’m concerned, the best part about being near rock bottom, is that there’s really only way to go.  And that, my friends, is onward and upward.  Who’s with me?! :)

Okay that is all for now.  Hope the world outside of these four walls is going well.  I miss it dearly already. 


Monday, September 19, 2011

Home Sweet Home


Plus one picc line, a few pounds, and a lot of medication, but it feels SO good to be home. 

The treatment went pretty well this time.  The first day was, as expected, the toughest.  Before they start the chemo everyday a nurse comes in and gives premeds, which for me was Tylenol, Benadryl, and steroids.  And let me tell you, you haven’t experienced Benadryl until you’ve had it injected directly into your bloodstream.  That stuff is powerful.  It only takes a few seconds before your head feels like it weighs 50 lbs.  Which can be a good thing when you’re about to start 6 hours of chemo.  Only problem is, that lovely sleepy feeling is followed by a high dose of steroids, which do NOT make you sleepy.  Quite the opposite.  Every sound is perfectly clear and sounds like it’s happening inside your ear.  And your legs act like they’re about to take off and run a marathon.  Like they just don’t understand why you’re laying down when they’ve got miles to run.  And thus the battle begins between your groggy head and your twitchy legs.  The good news is, your body quickly gets used to the medicine and by day two all these symptoms are less. 

By the end of day one’s treatment, I had chills and was starting to get a fever and back pains.  I also needed a blood transfusion because hemoglobin had dropped to 6.7 (normal range is 12-15).  But you can’t have a transfusion when you have a high fever, so I had to take Tylenol and wait until my fever went down to get a transfusion.  And it eventually did.  And those 2 units of blood were glorious.  The next morning I felt so much stronger, I never got another fever, and the next three days of treatment were a walk in the park in comparison. 

My next objective is recovery.  While I didn’t have as many side effects from the chemo as I did the first time around, I do feel more drained this time and I’m looking forward to sleeping at home and hopefully getting some energy back.  There will be lots of movie marathons on the menu for me this week, I think :)

Thank you SO much for all of your prayers and words of support this past week.  I felt and appreciated every one of them.  Never for a moment did I feel like I was alone in this.  Thank you again for reading :) 


Sunday, September 11, 2011

Let's Roll: The Night Before Chemo

     Tomorrow is the big day.  I’m starting treatment for my relapse of aplastic anemia.  It will be the same type of treatment as I had when I was first diagnosed three years ago, so I know what I’m getting myself into this time.  4 (or 5) days of chemo (called ATG) in the hospital and then home to recover.  The first day will be the worst, because the chemo contains antibodies from a horse and it is normal for the body to have a strong immune response to the foreign cells.  And yes, they’re seriously going to put horse cells in me tomorrow.  It’s kind of cool, actually. 

     It works like this:  Aplastic anemia is an autoimmune disease.  It causes my own T-cells (immune cells) to attack my bone marrow and prevent it from producing blood.  This is no good, because obviously blood is quite necessary.  So the treatment for aplastic anemia, is to suppress the T-cells so that the individual is free to start producing blood again.  To do this, a horse is injected with human T-cells, which causes them to produce antibodies against human T-cells.  Those antibodies are then extracted and given to me. 

Still with me? :) 

If not, it’s okay.  Just thank a horse for me the next time you see one.

The biggest difference between this time around and last time is my mental state.  I feel prepared.  When I had ATG the first time, it was following this series of events which occurred over the course of 3 weeks:
I was told I was sick.
I was told I had leukemia.
I was told I had aplastic anemia.
I was told I didn’t have aplastic anemia.
I was told, we’re very sorry but we were wrong, you DO have aplastic anemia.
I was told I should do the ATG treatment
I was told I need a bone marrow transplant
I was told my siblings are not matches
I was told I have no matches in the bone marrow registry
I was told I should do ATG

And the day after my 21st birthday, I started ATG.  And those are just the highlights, there’s even more to the story that I promise to tell you all about someday.

Needless to say, even though I’m only 3 years older, it feels like a different person is entering the ring this time.  I have spent this summer mostly at home with my family.  I have seen doctor after doctor after doctor.  I spent about 2 weeks considering the scariest possibilities and there was one week where I cried everyday because I needed to mourn the loss of my healthy body and acknowledge how hard this is.  But since then, I have slowly gathered strength.  From seeing and talking to friends, being with family, going to church and resting my body, I’ve created an armor that I didn’t have before.  I feel like I’ve looked my opponent square in the eyes, and even though it is just as strong as last time, there is an element of familiarity, and it no longer intimidates me. 

Since it happens to be the tenth anniversary of 9/11, I’ll end this post with the last audible words that were spoken by the passengers on United flight 93.

“Are you guys ready?  Let’s Roll.”

Wish me luck :)


Thursday, September 8, 2011

When Life Hands You Lemons

Everyone’s life contains some element of bitterness to it.  There is something that happened to them that they wish hadn’t.  Or something terrible that happened to a loved one.  Or something they did that they regret.  Everyone at some point in his or her lives is handed a lemon.  Or two.  Or a bushel.  Or a whole stinking tree.

I believe that life's bitter, hard times, are inevitable and universal.  No one is exempt from this.  It is something that we all will eventually experience.  And in theses moments when we’re being pelted with lemons by the mean old arm of life, we always have a choice.  You can do nothing to stop the external forces of life.  This is true.  But as the saying goes, if you really wanted to, you could borrow a cup of sugar from your nice neighbor, and make yourself some lemonade.

Or you could gather up the lemons and put them in a pretty glass bowl and use them as a kitchen decoration.
Or you could use the juice from them to clean your dirty cutting board.
Or you could squeeze them over your apple slices to prevent them from browning, because nobody likes brown apples.
Or you could pick them up, give them your best heave and tell life, “While I appreciate the sentiment, I’ve had quite enough of this.  Now kindly takes these lemons, and shove it.  Please and thank you.”

The point is, that the world will spin madly on however you choose to respond to your lemons.  So what if we looked at them as useful, potentially beautiful things, if we could just find the right angle, the right attitude, to let them be. 

This is easier said than done, believe me, I know.  But this is the story of giving it an honest try.