nat'l survivor's day 2017

This may shock you: the year I’ve lived in remission has been harder than when I was dying. 

I’ve only shared that with a handful of people until now.  My friend recently reminded me, “I wouldn’t have known that unless you told me.” My hope is that in a series of posts I can explain why I haven’t shared that life has been brutal, and also my reasons for sharing now.  Even as I type, I have doubt that my feelings and experience are worth sharing.  That it won’t make a difference or that no one will care at all.  That people will think that I just want attention or sympathy.  It hasn’t escaped me that this is a cancer blog and I currently don’t “have cancer.”  Yet I’m learning that I should share anyway… to help others, and to help myself.  (But, mostly to help others.  I’m altruistic like that.)

Emily McDowell said the worst part of Lymphoma wasn’t feeling sick from chemo or losing her hair, but the loneliness and isolation she felt when many of her close friends and family members disappeared.  She created empathy cards in response to this feeling.  I read about her maybe a year after having received one of these cards from a friend- the only card among many that I still have on display in my room.  It states: When life hands you lemons, I won’t tell you about my cousin’s friend who died of lemons.

This sentiment is hilarious and right on.  I’m so thankful she made that card and so proud that one of my friends knew to buy it for me. 

When you get diagnosed with cancer, pretty much everyone around you is in on the heartbreak and heroics.  It’s the human response!  It’s loving and beautiful.  So many people rushed to my aid and it cushioned my heart, mind, bank account, and body during treatment.  I have not forgotten these acts of generous kindness.  But that’s not what this post is about.  This post is about introducing the navigation of post-trauma life as people fade back into their own lives and how it can leave you feeling really, deeply alone.

Don’t wonder if I’m angry or upset with you, because I assure you I am not!  I’m not writing to make anyone feel guilty.  I know I would have responded the same exact way in those shoes, having never been through such a thing.  I take responsibility for socially withdrawing myself as a defense mechanism after a while.  I just want to take this opportunity to learn together how to face trauma and grief a little better. 

I’m writing for the people who I know may be headed down a similar road.  I’m writing for the people that you know, who don't yet know that they will be forced down these roads.  And I’m writing for the people that will be able to take the hand of those people along the way.  The road is long, winding, and not always as well lit as we would hope.  And silence seems to increase suffering.

Identity

            My college friend Liz is just starting treatment for breast cancer and linked me to her blog, which made me realize that I haven’t shared what I’ve been thinking for a long time.  I’m almost 6 months into remission and have been seeking answers to a lot of questions.  It started because I had a lot of time to myself; being sick can be isolating in many ways.  Plus, I had looked death in the face.  That'll make you think!  I was hearing many cancer stories.  People were being healed, and people were dying.  I was listening to friends talk about the meaning of life who had renounced Christianity, some who were always atheists or agnostics, and some who were struggling to reconcile their evangelical upbringings with post-modern thought.  So I deconstructed everything.  (Probably right after my last post... just after I was labeled "cancer free" and feeling confused about why some people get cancer, and why some people in general have shorter or more difficult lives than others.)  I stopped going to church.  I watched documentaries about people all over the world.  I read book after book after book.  I listened to podcasts.  I started over and went on a journey to figure out what I really believed now.

            There were periods where I would have struggled to tell you one piece of information that I believe to be TRUE.  Only recently have I started to gain some footing again.  I feel extremely humbled.

            “My experience today is tied innately to 370 trillion bacteria living with 37 trillion human cells controlled by 3 pounds of grey matter with 86 billion neurons which experience space time as a linear progression of moments.  It’s a remarkably local and illusionary perspective.” (from the podcast AskScienceMike)  ((Check it out!))  If that doesn’t blow your mind… I don’t even know.

             You can learn a lot on an individual pursuit of knowledge.  Yet, there are some things you cannot learn without the perspective of others.  There are also things that you can just NEVER KNOW- but let’s try to process a little at a time.

            During my post-cancer time I have focused on what I want to become.  Who do I want to be now?  What will I pursue with my life?  What is really important?  Kirekegard & Keller helped me to reflect on a few perspectives.  If you center your life on:

  1) Your spouse, you will be emotionally dependent, jealous, and controlling.  The other person’s problems may be overwhelming to you.

  2) Your children, you will try to live your life through them until they resent you or have no self of their own.

  3) Your work and career, you will be a driven workaholic and a shallow person.  If your career goes poorly, you may develop deep depression.

  4) “A noble cause,” you will divide the world into “good” and “bad” and demonize your opponents.

  5)  Religion and morality, you will, if you are living up to your moral standards, be proud, self-righteous, and even cruel.  If you don’t live up to your moral standards, your guilt will be utterly devastating.

So then, what?  Lately, I’ve felt like my identity was that I was a cancer survivor.  It’s hard to leave it behind because conversations move towards my experience constantly, and it truly has changed me as a human.  I am not the same.  Nor will I be.

This is where God confronted me.  Mind you, I had decided that if God was real, he might have just set this whole thing into motion somehow, but probably didn't interact in our lives- because... childhood cancer and genocide... science... fallibility of the bible... etc.  I was tired of hearing people say, "God did this" or that.  How do you know?  I told myself: that's just what Christians say no matter what happens.  I wasn’t certain that I believed that the resurrection really happened.

Through lots of research, now I cannot come up with a historically feasible alternate explanation for the birth of the first century Christian church other than a real miracle happened (that was totally unfathomable to them too) and (at least) hundreds of people witnessed it and were willing to account for it in public document (often leading to their death).  That's just one sentence that doesn't even do the facts justice.  We commonly oversimplify things, but thankfully there are scholars.  Thank you N.T. Wright, you intelligent man, for helping me understand context.  It turns out that a lot of logical people have thoughts on all of the above issues and I'm not the first to think them.  Ha!  If you’re curious about my other skeptical thoughts, we should chat... because I've questioned/learned way too much to explain here and I still continue to seek.  (Some of my friends are like, what?, you've been a Christian for a while.  You may have missed out on my atheist period, but it was legitimate.  And good.)

I now believe that I can only live a free, joyful, meaningful life when my identity is based on the fact that God loves all people regardless of anything.  Anything we do!  Let's just soak that up before we go drowning in the deep end of theology that we can never really be sure of while on earth and definitely don't need to be fighting over.  People all over the world- in Indonesia, China, Africa, and Europe- are experiencing Christ work in their lives in ways I hadn't previously heard about.  Grace is real.  Keller talks about God's grace like this: “I do not think more of myself nor less of myself.  Instead, I think of myself less.  I don’t need to notice myself- how I’m doing, how I’m being regarded- so often.”  Society tells me it’s all about me, but I need to think of myself less.  Simply put: I want to just do life with people, without fear, and be loving towards others.

I don't have life figured out.  I don't even know that much, but I know now in my mind and in my heart that God loves you.  No strings attached.  No matter what.  Some need to be reminded of that, and some may need to go on a journey to consider what/who God even might be (because it’s very much worth considering).  I'm convinced we should all seek knowledge, be more humble, listen, and talk with folks.  I'm open to hearing anyone's thoughts.  But wherever you are, God loves you.

I keep on living.

     I recently visited my Nana who had returned home from the hospital.  "People say, 'Don't rain on my parade.'" she explained.  "You ain't got no parade!  And God doesn't send down rain unless it's needed."  I laughed, but it's just another reminder among many to be appreciative for all the good things in life that we don't always acknowledge.  As of today, I have been alive for 32 years!  I received my diagnosis a little over 3 months ago.  There were moments at first that seemed to drag on, but time passes differently through the hour glass when you have unstructured, extensive amounts of it.

     People commonly use words like "fight" or "battle" in the same sentence with cancer, and I've been introduced to many folks that face what feels like assault from their illness every day.  They are the courageous ones.  I wouldn't say I engage with my cancer in attack mode.  Certainly my medicine does, but I experience my illness in a different way: I rely on the grace of God and I keep on living.  Patiently.  One slow step at a time.

     I'm thankful for so much today.  I have felt the hearts and hands of countless people!  As tired as I am of answering the question, "How are you feeling?"  I'm mostly grateful to have such a lovely annoyance in my life.

     That being said... instead of complaining about how cold it is outside tonight, maybe just thank God that you can feel it.

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!