I Hate Cancer, Especially on Thursdays

My day started out normally enough.

I slept well, woke gently, and floated between dreams and waking until I was ready to get up.

I ran my 5k, completing week seven before collapsing onto the stretching mat to recover.  My 5k’s are now five-zies-three-zies, meaning I run five minutes then walk three, run five, walk three, etc., for thirty minutes.   The first two sets of five minutes are easy now, which feels better and feels good.  The last two sets of five minutes remind me I am not a runner and that running could kill me.

Except I do love it, and feel so much better after it.  Slowly, my body that has had so many battles the last few years is – slowly – coming back, coming alive, getting strong.

I went to work, and I love my work, so that’s always a good day even when it makes my brain hurt from research or my heart hurt from people working hard (or not working hard) to heal.

I had a mapping session today!  I had to get an ear mold for my cochlear implant processor on the right side.  Unlike hearing aids, processors don’t “plug” into the ear.  They just hook on, because the sound goes through the brain (via the magnet on the back of my head) not through the ear.  With the magnet, this is normally enough to keep it on my head – but not for running or dancing.  So I get ear molds that hook onto the processor, like hearing aids, except that they don’t “plug up” my ears, just fit in at the edges to help keep it in place.   So we got that done.

Then we did a hearing test, to see how I have been hearing with my latest map.

A “map”, of course, is a measure of what the computer part of my cochlear implant is picking up.  So it “maps” the frequencies and volume settings, to see how big of a window for each frequency I am hearing.  We adjust these settings, so that the sounds are balanced and I pick up the right frequencies and all that.  Because the computers can only pick up a small range, it has to compress normal ranges of sound into what I hear (which is why initially it sounds so awful, then robotic, then my brain leans to interpret it correctly).  But also because of that compression, the computers are super sensitive to changes in loudness.  So not only is it trying to pick up different kinds of sounds, but also balance the loudness of sounds.

So, basically, a mapping session adjusts the level of stimulation in each electrode, so that I can hear soft sounds well and comfortably tolerate loud sounds.  This is done for each of the 32 electrodes on each side, which makes it a tedious process but is still a miracle to me.

Anyway, my last map was the one I have loved the most since having surgery.  However, I could not always hear my mother, and I could not hear little kids, and I was missing parts of words.  So we tested, and my volume was low enough that some sounds of words (like “s”, for example) were being completely missed or dropped.  I wasn’t hearing at those decibels, and so just missing out.

So then we did a word test, where different sentences are read and I have to repeat them.  I only got 68 of 100 words correct, which is lower than my last score of 70 something.  So frustrating!  But it explains a lot of my stress and frustration the last few months.

Because it is very hard work to hear, and takes so much energy, I just have to do my best and don’t always know that the sound should be better.  It just is, and is so much better than before, so I don’t always realize I am missing so much.

And, because it is such a miracle, people around me take it for granted, too, and forget that I can’t hear everything (I only can hear where my face is pointing because of the microphone settings I use), that I can’t hear two sounds at once (both sounds just go to static), and that I am having to think about what I hear – so there is a slight but enough-of-a delay to leave me behind when people talk to fast.

That, along with language and culture differences, really make communication very hard for me.  It is so much better, yes.  Obviously.  And sound is much more accessible, which was what I wanted.  So it is a miracle, and I am very happy with them.  But I do not hear everything – not just because I cannot, but because the computers on my head are only computers, and limited to what they can pick up.  And out of what they do pick up, only about 68% is making sense to me.  So that’s a big gap, and when emotions are high or people are impatient, it leaves me frustrated and confused – and hurt, when people are oppressive about it instead of patient.

When I say, “I don’t understand” and try to clarify, I really am asking for help – not trying to start drama or fight or argue.  I really just don’t understand, and really do just need help.  So you don’t have to take it personally, and I will ever be grateful for your patience.

But mostly, it is a miracle, and I love it.

I have two friends that I can hear their voices perfectly, and I grieve because I never get to be around them, and I crave that perfect sound.  I miss understanding so easily, so well, and the enjoying interaction with another person almost without effort.  I hope as I continue to practice and learn, other sounds will smooth out in a similar way.

Anyway, because I was missing frequencies, we opened those higher frequencies back up.  We had them turned way down because sounds like dishes, water, and other high frequencies were so painful they made me sick or pass out.  High frequencies are not pretty sounds anyway, so it’s hard to make them sound normal or comfortable.  But if I want to be able to hear high sounds, like understanding the voices of little children, then I have to get enough of the stimulation to try – even if we keep the volume of it down.

See? It gets complicated!   HERE is a cool article about mappings.

So we turned my high frequencies back up, but just a tiny bit.  We are going to try to teach me slowly.  We also turned up the general volume on all frequencies for both “ears” up on both sides.   So I am getting more sound than I have ever had before!   It’s amazing!

Also, it’s loud.  I am not dizzy or sick like I have been after some mappings, so we are still in the normal range.  But it does make me want to rip the processors off my head and enjoy the silence again.  Except I have to endure it to learn, so here we go another round.

I also got my remote fixed so that it will quit beeping in meetings and church!

It as quite the mapping session, and we got a lot done!  Brooke is my hero.

My friend Stephanie went with me, and then we went to eat after.  I got the most amazing salad, and I think I am still full of salad.  Also, I love salad.  I mean really, seriously, for realz I love salad.  The only thing better than a good salad is going out to eat with friends, and having a side of girl talk with my salad.  Stephanie has been a good friend to me since my first day at Brookhollow, all the way through my baptism, and helped with my surgeries.  We have worked together at TCC, and I am glad when she has summers off so that we can meet for lunches frequently and often, with Temple dates in between.  I am glad of her, enjoy our story swapping, and also I love salad.

On the way home from my salad, my brother called.  My father is back in the hospital.  That’s what brings us back to cancer.

My uncle died of cancer.

My grandmother died of cancer.

My mother had ovarian cancer, and is an amazing miracle of a survivor.

That’s what saved my whacky ovaries, was her knowledge about early testing.

And now, my father has cancer.  And it’s back.  Bad.

So that’s how I got to Arkansas tonight, on duty with my aunt until morning when my step-mother and uncle come back for a shift of sitting with my dad.   It’s been good, though, because we have talked and chatted and laughed.  We have done some singing, told some jokes, and talked about everything and anything.  I got to tell him about my job interview next week, about how I built my house, about my school (he said he was proud of me for my education), and about my work.  We have shared memories from growing up, laughed about adventures we have had, and talked about all kinds of life-ness.  It has been amazing.  I love him so much, and we have come so far, and I am grateful for each and every moment – truly, indeed.

Except for the cancer part.

I am sick of cancer.  I hate it.  Bleh.

But if there is anything our family has learned, is that cancer is best fought together instead of alone.

My mom taught me that.  She is my cancer hero, a true warrior.

So here I am, in a dark hospital room, with the glow of my laptop screen burning my eyes.  There is a view of giant crosses outside the window, where I can overlook my old private practice office where I worked when I lived here.  Little cars move their headlights through the roads below, almost like an airport.

My aunt is playing cards, and my dad is telling old stories, and I am typing.

It’s as normal as anything, picking up where we left off, and good time chillaxing with the family.

Except for the cancer part.

Except that we’re sitting in a hospital room.

But – what is also true – is that here we are together, a united miracle, a postcard of at-one-ment.

And that’s a good thing.

The most important thing.

The most important thing of all.

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.


I Hate Cancer, Especially on Thursdays — 5 Comments

  1. Sorry to hear about your dad’s relapse. You and the family will be in my thoughts & prayers.

  2. I know that I sent you a comment earlier, but now I have more time, and having re-read your post, I feel the need to add a bit more.

    Cancer is more than bleh!! Cancer is a lot more than Bleh!! Cancer is a heartless, emotionless, careless and nasty roadblock to an otherwise wonderful opportunity… which we call “life”.

    That you have dealt with so much of it in your relatively few years, is a testimony to others that you are “that strong”, that He has given you the gifts to deal with so much. That you are able to share the journey with so many others, in words that we are able to understand, is one of the many parts of Emily that gives those of us who’s lives you are touching, further evidence of His love for His children.

    Your light is not hidden under a basket. It is not placed in the valley. It sits atop a mountain to be a light unto the world. Thank you for choosing to follow His example!!

    I know that the pain you are dealing with is, to borrow your words, “for realz!” I know that your story is not yet complete, that there are many chapters to follow. I know that you will continue upon the path that He has set before you, and that as you do so, others will join you on that path… on journeys of their own.

    I am happy and priviledged to call you my friend.

    Thank you.

  3. Pingback: Uncertainty is much nicer than this | Is This Mike On?

  4. Emily I am praying for you and your Dad and your family. You are truly a miracle, you are so loved by everyone and I don’t want that to ever be a burden for you. Take Care. Jo