This and That

The past week and a halfish have been GREAT.  And here’s the highlights:

1.     My platelets went up.  Allllll the way to 40,000! If I could high-five my bone marrow, I totally would.  Well done, little platelets!

2.     And since my platelets went up so nicely, I got to have my picc line removed!!  Sayonara, sucker!

3.     And since I got my picc line removed, I get to take showers without having to ask my mom to wrap my arm in cling wrap.  And I can sleep on my left side now.  Bonus!

4.     And hold onto your seats, people…I got to shave my legs!!!!  Adios, Sasquatch legs!

5.     My brother Shane and his wife+baby bump came to visit from Chicago for Shaner’s birthday.  Their visit meant dinner at our fave Mexican restaurant, going to the movies, pumpkin donuts from the cider mill, breakfast at our favorite diner, and pumpkin carving.  Which was a disaster on my end.  I’m still a wimp.  I had to hand the reins over to my brother by the end because I was too tired.  Pretty lame.

6.     I made a layered cake for the first time in my life for Shane’s birthday.  It was a success!  It took two days and all of my energy, but it was bomb.

7.     I got to spend the weekend with my sister and her boyfriend, my best friend from college and a blue pit bull named Blue.  This is always a winning combination.  And yes, Blue is as cute as he sounds. 

8.     I got a care package from my roommate in Pittsburgh.  And it is a well-known fact that care packages make everything better. :)

9.     I went back to the doctor today and my platelets went up to 45,000.  My hemoglobin is 9.5 and WBC are 3.0.  I don’t have to get my counts checked again for 2 weeks!

10.  And to top off this happiness, with my counts on the rise, there is likely a visit to the ‘Burgh in my future.  And maybe my bro and sis in Chicago.  YAY!  I can’t wait! :)

Oh! And speaking of baking, I’ve decided to steal an idea from some of the food bloggers that I follow/am obsessed with.  I’ve seen lots of food bloggers who are nearing their 30^th bday do “30 by 30” lists where they try to complete 30 recipes they’ve never made by the time that they’re 30.  But since I don’t think I need 6 years to finish 30 recipes, I’ve decided to do “25 by 25”.  This might be a bit ambitious since I only have 6 months to do this, but I’ve currently got nothing but time on my hands, so why not?  I’ll give you my list in a different post. 

Thanks for reading! And Happy November! :)

Kelsey

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 :)

Kelsey

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 :)

Kelsey

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. 

Kelsey

Home Sweet Home

A

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 :) 

Love,

Kelsey

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 21^st 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 :)

Kelsey

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.

Kelsey