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,

Kelsey

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 4^th 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! 

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