Three years: My story

I’m not sure how to start this.  Usually, when I write something it’s well-formed in my mind.  That is not the case here.

Today, I realized that tomorrow will mark three years since my cancer diagnosis.  As I pondered that, I realized: I’m starting to forget my story – my own experience.  My own memories are becoming conflated with what others have told me from the times I don’t remember.  

But I want to remember my experience.  I want to remember.

The story has been well-recorded, first as we were experiencing it, and especially by my mom here on the blog.  But I haven’t shared simply how I experienced those dark days.

Usually, I fact-check, get my details straight, make sure everyone remembers things the same way I do.  I didn’t do that here.  This is just my story.

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I remember the headaches.  They hurt, so much.

I never get headaches.

I remember attributing that to diet.  “Maybe it’s dairy withdrawal.”  (That is not a joke.  I actually attributed it to that.)  

I remember having no undue worry about my headaches, even though I tend to be a worrier.  

I lived life as normal.  I remember not stopping life for headaches.

I remember the nausea creeping up.  Mild, at first. 

I remember going to dinner with Andre on Tuesday, telling him about my headaches. Also that I was feeling nauseous some.  I don’t remember if I had an explanation for that.

I remember Wednesday morning, dry-heaving every ten minutes.  I could time it.  

I remember calling my dad and asking what I should do: “Go to the ER.”  

I don’t remember feeling undue concern. 

I remember Andre and the boys taking me, and being there by myself (I think Andre needed to take Dominic to school?).  I remember Andre calling and telling me Christian had thrown up.  I remember telling the nurse that.  I remember them having me do a pregnancy test, it was negative, I just had a stomach bug.  I remember calling Elle and asking her to come get me and bring me home.  I remember apologizing and being thankful that she would expose herself to a bug to come get me.

I remember feeling better, somewhat, with the anti-nausea meds.  I remember feeling comforted to have it confirmed that it was just a stomach bug.

Then, all I really remember, for the next 24 hours, is laying on the floor in my closet.  I have memories of blue Gatorade, a banana, trying to sit up and not being able to, too much effort, I can’t do it, it’s getting late, I should get in bed, so tired, the carpet is scratchy, staying on the closet floor.  I don’t think I had a blanket.  So tired.  A bowl beside me.  I think I threw up several times, but I’m not sure.  I remember the boys coming in to say hi, Christian wanting to nurse, the boys wanting to play, Andre being stressed, my being so tired, my feeling guilty Andre had to take care of all of us, my thinking I would be better and back to normal soon.  I remember at some point deciding we should cancel Christian’s birthday party that Satruday.

That period in the closet is all a haze.  Then I remember, Thursday afternoon, realizing I had not urinated in 24 hours, realizing that I’m dehydrated, and need fluids.  I remember thinking that happens with bad stomach bugs.  I remember deciding with Andre that he should get the boys to bed, then our friend Elliott could come over and stay at the house while Andre took me to the ER.

I don’t remember much from the second ER trip.  I remember them wanting me to give a urine sample, and my not being able to.  I remember the nurse using a very kind voice, but I just couldn’t.  I remember not I even getting off the bed.  I remember an IV, benadryl to help me sleep (in retrospect, I don’t know why they gave me benadryl?  Maybe I was already agitated.)  I am not sure if this is my memory or Andre’s, but the ER doctor said: I don’t know what she’s got, but I don’t want it.  Meaning, he just thought I had a bad stomach bug.  I remember it was the middle of the night.

I remember Andre helping me out to the car, it was dark, laying the seat down for me.  I remember the leather seat.  Drive home.  I remember Andre helping me into the house, our friend Elliott on the couch, and I remember not making it past the living room before laying down on the floor.  I remember Andre coaxing me to the bed.  I remember thinking – Elliott is in nursing school, I wonder what he thinks of all this.  I remember not thinking anything else was wrong.  Mainly, I was too sick to think.  

I think I slept in our bed the rest of Thursday night.  I remember feeling better Friday, because of the fluids, and feeling up to coming out to the living room couch.  Toys everywhere.  Boys happy (or at least just being boys; normalcy was all I wanted).  I remember how happy and relieved Andre was.  I felt ok.  Then, without having been nauseous, I remember throwing up blue Gatorade all over the couch.  I remember apologizing, feeling so sorry for another thing for Andre to clean up, the stain on the couch, going back to bed.  I remember Andre giving me my anti-nausea meds.  I don’t remember at what point I stopped giving them to myself, but after the second ER trip I don’t remember giving them to myself at all.  I remember Andre rubbing the topical one on my wrists, talking to my dad on the phone, describing: “Yes, some Gatorade, I’ll ask her about a banana.  Alyssa, do you want a bite of banana?  Do you think you could take a bite?  Yes, she took a bite.  Yes, alternating the nausea medications every three hours… lethargic…”  Concern in his voice.  “Alyssa?  Alyssa?”  Me trying to respond.  Me being so tired, so heavy, thinking I was responding.  I may have even tried to talk to Daddy on the phone, but I don’t remember.  I don’t think I responded more than “Uh-huh.  Mm.  Hm.”  I remember thinking that I was responding, that my responses were fully adequate.

I was lying on my right side.  Mom got there.  I remember her coming in, I remember smiling and thinking I said “Hi,” but I’m told I just smiled.  I remember her saying, “I’m here.”  I remember her talking to Daddy on the phone, similar updates.  “Lethargic.”  To Andre: “Richard said the medicine should not be making her this lethargic.”  Something about going back to the ER.

I have a very vague memory of Andre coming out of the bathroom, having gotten to take a shower after Mom got there, but that could be my brain filling in the gaps with the story I’ve been told since then.  If I do remember that, it would have been after my first seizure.  I think it’s a true memory, because I remember being cold, and being confused about why I was cold.  I may have even said, “I’m cold.”  I had urinated during the seizure.

I remember lying in my bed, knowing I was sick, thinking it was a bad stomach bug, thinking I would get better, not worried.  So tired, but not worried.  “Blissfully unaware.”

That’s my last memory in my own home, my last memory with my normal life.  My last memory before cancer entered our lives.  

I don’t remember the EMTs, the firefighters, the injections, the questions about allergies (wondering if I were experiencing anaphylactic shock), the gurney, the ambulance ride.  I don’t know if Andre rode with me in the ambulance or not.  

The memories I do have of the following time are few and far between.  Cold, in a bright room, on a table (probably an ER bed).  Imaging (MRI or CT scan).  Glimpses.  Impressions.

A dark room.  Daddy at the foot of the bed.  “Hi, Sweetie.”  

Andre and Mom. 

A nurse to my left.

A window to my right.

A hospital gown.  I must have had an IV hooked up (in fact I know I did), but I don’t remember it.  I don’t know if I remember the arm restraints, when I was still agitated.  

An odd room, not what I expected from a hospital room.  No concrete details, just… odd.  Not as sparse.  It turns out it was a makeshift-ICU, while the regular ICU was being remodeled.

Still snatches:  Family and friends.  Grandparents.  Singing.  Asking for my grandparents to sing to me.  Asking for whoever was around me to sing. Lying on my left side, Grandma holding my hand, Papa Fred being there.  Jess and Mindy to my right.  It was Jess’s birthday (or the day after).  Ann, with a beautiful fake flower arrangement, in case the ICU didn’t allow real flowers.  Elle.

Someone brought my blanket.

Aunts and uncles.  Uncle Jimmie.  Every one of my Jackson cousins came.  I remember being a little shocked by this.  I remember thinking: You came all the way from Dallas?  I remembered enough to ask about Cassie; I was told she had been there when I was asleep.  I remember Mom being glad I was able to remember enough to know I hadn’t seen her.

The doctors: A male doctor, a female doctor.  One of them was Dr. Love, I think she was the Norman Regional oncologist, and the male was the Norman Regional neurosurgeon.

You have a brain tumor that is hemorrhaging.  Swelling.  Steroids.  Brain surgery.  Melanoma.  Tuesday.  Mom: Alyssa, do you understand what they are telling you?  Me: Yes.  I have a brain tumor.  I remember understanding intellectually, but also having no emotional reaction.  I remember not comprehending how close I was to dying, not even realizing that was part of the scenario.

Saying: “Even if it’s not ok, it will be ok.”

I remember experiencing double-vision, asking for an eye patch (I’m sure that was Dad’s suggestion).  I think I had to say it more than once.  They brought something white with small holes, I remember thinking it was kind of made-up, but I remember that it helped.  I remember Daddy being concerned about the double-vision, and the brain swelling.

My memories slowly become more clear, more integrated with reality, after this, until I remember most everything: discussing with Uncle Jimmie where to have the surgery done, at Mercy, they have a Neuro ICU, we need to transfer her there.  I remember all of the transfer: being wheeled out of the makeshift-ICU, the ambulance ride, arriving at Mercy.  Talking with the EMT about OU football games, about how one of her partners had been on my call. 

After arriving at Mercy, my memories are clear; nothing is hazy anymore.

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Before I leave this post, though, the one thing I remember, that I want to always remember, is the visual peace.

A knowledge that this visual was not real, but it was peaceful all the same, and being grateful for that. 

Being aware, somehow, that dying could be distressing, but this was not, and I was grateful.

Beautiful deep purple/pinks, fading into gold/tan the color of desert sand, almost like a tapestry, even rippling like a tapestry. 

Knowing that it wasn’t real, that it was like a tapestry, like a dream, that the world and “awake” life were beyond the tapestry, but it was so enveloping.

It evoked an image of Mary and the newborn Jesus, a starlit sky over a sandy Bethlehem.  Whether Bethlehem is actually sandy or not, I do not know.  But I use the word “sand” instead of “dust” because, to me, “dust” has an empty, barren connotation.  This peace, these colors, were anything but that.  They were full. 

Rest-full. 

Peace-filled.

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That visual started after I had my seizures, but persisted during my times of unconsciousness/rest even after I arrived at Mercy.  I don’t remember if I experienced it after I finally had my surgery that Monday; if I did it was only one or two more times.

I remember, and I want to continue to remember.  Not because of a morbid fascination, but simply because: It is my story.

I want to remember for me.