Doing time

     At some point, my life started feeling like an odd vacation… one where you don't have to work, but you also can't go anywhere cool.  I had a hard time adjusting to having so much alone time.  Long gone were the days of waking up at 6AM and returning home exhausted from working with hundreds of students.  What would you do with your days if you suddenly knew you'd be free for a minimum of 6 months?

     Keep in mind: I had to consider my physical and financial limitations.  Though I would've liked to, I couldn't use this time off of work to jet set around the globe.  So, I spent a lot of time thinking about our modern standard of American productivity.  Pondered what it meant to live purposefully as Christ-follower with cancer.  I wrestled with the idea of rest.  You might think, "Kelli, your body is internally at war.  You obviously need to rest."  This I know; yet, I found it hard to give myself permission to do so.  I felt guilty about resting for a while.  Then I sensed that God didn't need me to always be pursuing certain types of activity to earn His favor.  That's a message that comes from our culture.  There is a difference in resting and being lazy.  I am allowed to slow down and be grateful.  I found peace again in the stillness.

Be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12)

     You know how people in prison talk about "doing time?"  (I used to watch a lot of Lockup on MSNBC.)  I feel that this is a similar state of being.  I didn't commit a murder (that you know of- heh), but I have time to serve nonetheless.  And I want to "do time" well.  I believe that I will be healed.  I also believe that one day I'll look back on this perpetual period and it will seem very brief in the grand scheme of things.  Each day I feel less like a frustrated Bill Murray in Groundhog Day, and more like a person with an opportunity to learn and grow- a person who is more thankful, more generous, and more trusting of God with my future.

     Some days I see others' lives moving forward and feel like mine is pretty stagnant.  But I'm learning to think about it differently.  My friend Laura used the analogy of a slingshot while we were walking the other day.  I'm at the position where the band is stretched all the way back and holding.  The potential is there.  My life will burst forward once again in due time.  All I have to do right now is to focus on walking with the One who is able to do immeasurably more than all we ask or imagine.  And when I look at it that way, I think I have a lot less on my plate than most of you.  Dare I say cancer has been a blessing?

daddy warbucks

     When one of my sisters was born, she had very little hair.  As time went on we endearingly called her "Daddy Warbucks."  Thank God she's not returning the favor now that I'm 31 and bald.

     I was a compulsive hair-brusher, you guys!  I carry carried a brush in my purse at all times.  At school, if my office was on the way, I would sometimes pop in during a transition to another classroom for the sole purpose of brushing my long, straight hair into place for five seconds like I had serious problem.  Now that you know I'm a freak, you can imagine what it might have been like to consider losing hair during chemo.

     The day of my diagnosis I asked my oncologist if I would lose my hair.  He responded matter-of-factly, "Three weeks."  Clearly, this was common and I needed to accept it.  You can't prepare for a lot of things when you have cancer, but with this I had a little bit of time.  Some survivors told me they took charge and shaved their head right away.  I kind of wanted to hold on to whatever I could until it got patchy.

     So, I did things gradually.  Two friends came with me to get like 80% of my hair cut off the first time and made jokes to ease my anxiety.  I looked like a completely different me in the mirror.  Actually, I started thinking that with the new hairstyle I looked more like an image I had in my head of gold medalist Kerri Strug from that clutch 1996 vault that earned her a gold medal.  A little too swoopy for my taste… but, like, go USA & stuff.

     Then I got a faux hawk.  The edge made me feel a little more modern.  Still, the reflection in the mirror looked foreign.  Even with all the positive comments from friends, I felt like my femininity had been compromised.  So, when chunks of hair started falling out in my hands, I knew I was in for it soon.

     One morning I text Christy, my housemate, "Today's the day."  She said she'd make a head-shaving playlist.  I didn't know if I'd want to laugh about it or cry about it that night, but I would gladly accept two glasses of wine either way.

     Four friends-turned-barbers took turns shaving my head.  When I saw myself for the first time- in a cell phone photo because I couldn't wait- I took a deep breath and told myself to accept it.  The next morning I took a razor to my head and cleaned it up.  (My friends were mediocre barbers, but I still love them.)  I accepted myself a little more.  In addition, I told myself I should be thankful I had chemo in the winter so I could wear hats.

     I've mostly come to terms with being bald at this point.  I'm not pumped about it, but it's become normal.  I don't get wide eyes when I look into the mirror anymore.  I do kinda cringe when I think about the hairstyles I might have to have as it grows back in, but people told me that it might come back curly or a different color after chemo.  That might be kinda cool.  The funniest part of this whole experience came about a week or so after shaving my head- when I asked my mom to touch up the part behind my ears…

     "Did you ever think you'd be helping me shave my head?"
     "No.  Not unless you became a Neo-Nazi."
     "What?!  You'd help me if I became a skinhead?  I'm putting that in my blog."
     (That's unconditional love, folks.)

 

Chemo

     Maybe you've been to chemotherapy with a loved one.  I'd only seen it portrayed in film.  Yet, I doubted that I was gonna become instant friends with three old guys who would offer me pot brownies like in Joseph Gordon-Levitt's "50/50."  When I went in to the Virginia Cancer Institute a little over three weeks ago for my first chemo treatment- the day after my diagnosis- I didn't really know what to expect.

     After signing in and having blood drawn, they sent me back to a second waiting room.  My dad was accompanying me and we were the youngest there.  This room, by the way, was silent.  There was a huge bookshelf lining one wall, facing the horseshoe layout of chairs.  On the shelves waited rows of books, pamphlets on chemotherapy, a paper bag marked "free wigs" that I will never be interested in, and a pile of caps that a knitting circle gifted to help keep our skulls warm.  My name was called after about a ten minute wait.

     We walked into an adjacent, large room of leather recliners and I was seated directly across from the nurses' station.  In the treatments to follow I could choose to sit wherever I wanted, but today they needed to have me close to monitor how my body would respond.  For example, one of my drugs commonly caused "rigor," which is when a sudden cold washes over you and you get the shakes.  My nurse walked me through a paper that outlined the R-CHOP doses.  R-CHOP stands for: Rituximab, Cyclophosphamide… just kidding, I'll spare most of you.  The rest of you nerds will still look it up.  I get 11 agents while sitting for chemo.  Three of them are chemo drugs, one is targeted therapy, and the others are to prevent reactions, or for nausea.

     The sideshow freak of my regiment is Adriamycin.  Most of my drugs dripped from hanging IV bags into the port on my chest.  This "Kool-Aid chemo," as I like to call it, had to be administered through two syringes by my nurse over about five minutes.  Adriamycin is a chemical that can cause extensive tissue damage and blistering, so my nurse prepped by adorning hazmat attire.  If this didn't make you think seriously about the toxic liquid entering your body as a patient, I don't know what would.  She covered her normal scrubs with a suit, added a face mask, and pulled on two pair of gloves before touching the bag that holds the syringes.  The fun part is that you had to eat a popsicle or chew on some pellet ice while the red liquid entered your system (because it can cause mouth sores).  Pellet ice is one of my love languages.

     The second time I unplugged myself from the station and walked to the bathroom with my IV pole, I felt like I fit in.  It was reminiscent of strutting through New York City streets with headphones while visiting friends in Brooklyn on my fifth visit, as opposed to the way I waited in line with tourists for the Empire State Building upon my first trip.  Except the crowded sidewalks here were lined with mostly bald guys dozing off in their chairs.  Either way, I felt like one of the regulars now.

     My body handled the R-CHOP well over the six hours my dad and I sat.  Four of those hours were for Rituxan alone!  I was told treatment would be somewhat shorter the next time I came since my nurse could push the drug faster without fear of a bad reaction.  I was proud of my young body!  Still, I left cautiously, wondering how I might feel over the next few days.  I hoped I would do well compared to the standard, of course, because most people receiving this treatment were much older.  I would just have to pray and wait and see.

Kool-Aid chemo

"God bless us- every one!"

     Today I want to give a blog shout-out to my incredible friends out there who have lavishly blessed me with gifts via mail.  The arrival of FedEx and/or UPS trucks considerably boosted the quality of my otherwise mundane days at the house alone.  THANK YOU for helping me call almost every Monday-Saturday for the last couple of weeks "Cancer Christmas" because I got to open a package!  One day I removed a tiny pack of tissues from a bubble wrapped envelope from my sister, which was awesome BECAUSE I GOT TO OPEN A PACKAGE.  It's not about the price tag on the gift, it's the thought and the surprise that counts!  She later text, "I don't know why that shipped separately from the rest of the gift."  But I'm just over here like, "It's more fun to get multiple packages on different days!  Plus, I legit need travel tissues everywhere I go.  You da bomb."

     I think the FedEx/UPS drivers and mailwoman think I have a serious shopping addition.  This makes me giggle as I creep back inside from the porch.  "God bless us- everyone!" (Tiny Tim, A Christmas Carol)

     P.S.  You gift-givers should have received a thank you card if I have your address.  If you haven't, I hope you enjoy the pony express in your future as much as I do!  If you were one of those Sneaks who didn't give me an address, I shake a (very thankful) fist in your general direction.  My head is so warm & my heart is so full.  XO!

The time I cried in the hospital

     From the ER, they moved me to a room on the oncology floor.  I was informed by… the transport guy?... that this didn't necessarily mean that I had cancer and that other patients got moved there sometimes at first.  Eventually I coerced my parents into leaving the hospital to rest.  I wanted to sleep too, but I realized that it wasn't gonna happen for a couple of reasons: first off, I had to sit upright at all times to breathe.  Secondly, someone different came in every few hours to wake me up for some reason.  That was fine- I hadn't slept for more than a couple hours at a time for the last couple months anyway.  Once I had a twenty minute conversation with a nurse about her son who had a learning disability at 4am after she took my blood.  I hate the 4s, but the people taking care of me were kind.

     After a couple days, my parents' favorite nurse got me the penthouse suite of hospital rooms.  It would only fit one bed, which meant I had no chance of getting a sick roommate, and it had a window.  And a window bench!  It's the little things that get you excited whilst under the daze of IVs and insomnia.  (I also loved the giant cups of pellet ice that nurses would bring me at the push of a button.)  Many amazing friends stopped by and sat on that window seat where I lined up my flowers.  I enjoyed hearing stories of the outside world, but it was hard to see that some of them had been crying or started tearing up when they saw me.  It was ok though- to feel how they felt.  We shouldn't always hold back our tears.

     I cried one time.  I had just gotten myself dressed after taking a shower, and I was leaning on the bathroom sink with both arms, drained of energy, as my mom brushed my long hair.  They had surgically inserted a port into my chest and I couldn't raise my right arm.  I looked at my mom in the mirror and told her I suddenly felt like I was going to cry.  "It's ok to cry- let it out," she responded as she hugged me from behind.  She started to share words of comfort, but I cut her off.  "I'm not scared.  I'm just exhausted."  Silent tears rolled down as I hung my head over the sink.  I was tired, but I was not discouraged.  I would get through it.

(For those of you curious, see the attached diagram of a chest port.  While it was healing it used to make me feel like a cyborg- having something foreign like that under my skin.  Now I've gotten used to it.  I receive my chemo treatment by getting hooked up in the center of those three grey bumps, which can be seen/felt through my skin.)

Part 2 of Stage 2

     I'm thankful that I work with children for so many reasons.  This time, oddly enough, it's because that's how I got "bronchitis."  One of my favorite students patted me on the back one day while shaking his head and said, "Sowee I gabe you my sickness."  And in response now I think: Bless you child!  Bless you and your grimy hands!  Thank you for not covering your cough!  Because if I never would have gotten a virus, I don't know when we would have caught the cancer.

     On September 26th, after being told I had bronchitis about 10 days previously, I called my sister from my kitchen floor.  Actually, I called my mom first and told her I was thinking about calling 911 because I could barely breathe and wanted a second opinion.  She told me to try Karen first.  Thankfully, Karen was able to rush over and pick me up.  She put peppermint oil in my hands as I struggled to get breath in and out of my lungs.  She rubbed my back in the car as tears started to form.  She demanded that they do a chest x-ray while I was getting a breathing treatment.  And she drove me to the ER when Patient First pointed out what looked like a cumulous cloud on my x-ray.  I "likely had pneumonia."

     I've thought about what I would have done if she hadn't answered her phone.  Or if she had answered, but hadn't been close enough to make it to my apartment in time.  Thank God the timing was right.  Sometimes I can be "too tough."  I don't think I would have called 911.

     When I got to the ER they did 4 more back-to-back breathing treatments, among other things.  I got admitted and Karen told my parents they should probably make the hour and a half trip.  They had told me I needed a CT scan because they wanted more information than what they could see on the x-ray.

     The first time a doctor used the word "tumor," my mom was in the room with me.  I think she was concerned, but didn't want me to panic or jump to any conclusions yet.  But I wasn't afraid.  I honestly felt calm.  Whatever was happening to me was happening to me... and it was out of my control at this point.  I'm not afraid of dying anyway.  My good friends know that.  I don't particularly want to die, but if it's in God's will then He'll use it to accomplish something greater.  I have no doubt about that.

     "Can any one of you by worrying add a single hour to your life?"  -Matthew 6:27

     I definitely had pneumonia.  Fluid in my lungs.  Infection around my lungs.  And swollen lymph nodes.  They were referring me to an oncologist because they suspected it might be lymphoma.

Part 1 of Stage 2

     I’m 31 years old and I have cancer.  More specifically, I have Stage 2 Diffuse Large B-Cell Non-Hodgkin’s Lymphoma.  I didn’t know it for sure until October 1, 2015; however, looking back, there were signs.  I’d experienced extreme itchiness all over my body- from the bottoms of my feet to the inside of my ears- and hives started appearing about seven weeks prior to my diagnosis.  Later we’d find out that this was a symptom of respiratory distress.  I was given steroids by Patient First and told that if the problem persisted, I might want to see an allergist.  The allergist tested for forty common allergies.  He told me I wasn't having an allergic reaction, but was experiencing “idiopathic hives.”  Essentially this meant that my body was producing histamine for an unknown reason.  Again I was given steroids.  When the steroids wore off, I was told that the hives might last for several months, and then disappear.  They may also come back.  I was frustrated and I was exhausted.

     As I lay awake at night, often after taking a cold shower at 2:30 in the morning, I thought about the character of God and a passage from the gospels.  A man with leprosy “came to [Jesus] and begged him on his knees, ‘if you are willing you can make me clean.’”  Jesus replies that he IS willing, and the man is healed.  (Mark 1:40-41)  I already believed God COULD heal me.  I began to pray that the Lord WOULD heal me... as soon as He was willing.  Yet, as weeks passed, I got the feeling that He wasn’t relieving me for a reason.  Now I know that reason.

     The Lord goes before us at all times.  He never forsakes us.  His timing is perfect.