Complaining... because I need to (no holiday)

Tuesday, everything seemed back on track.  Fourth dose?  Done!  Injection to keep my white blood cells up?  Administered.  I left the hospital feeling slightly confident and chipper (well, as much as you can after chemo).

You see, the injection and when my next appointment fell meant I could have Easter with my family!  I tend to miss at least one family holiday every single year.  2018:  I had surgery to remove the mass in my chest and missed Thanksgiving.  2017:  Thanksgiving was again absent because I was recovering from internal radiation.  2016:  Almost died Easter weekend and spent it in the hospital.

But, 2019 was looking up!

Until they switched my chemotherapy day to Monday instead of Tuesday...

Chronic pain means you rarely do days out, much less back-to-back.  So, no Easter.

If that isn't enough of a kick in the gut, I was also told I have blood work I have to do at the local hospital Monday or Tuesday this week.  I was supposed to be given a slip at my appointment.  The specialized van service in my area can't fit me in because it's last-minute.  My husband and I will either try the bus in our area or walk down and back if the sidewalks are clear.  I don't know what to do if I can't make it.

I spent most of the day yesterday crying and sleeping.   Few things in life I hope for tend to come to pass.  Maybe the energy of small hopes will end up in bigger ones...

Neutropenia, the last appointment, and not wanting to go

I had dangerously low white blood cells on Tuesday.  I was told by a nurse practitioner because I saw her instead of my oncologist.  Why?  I don't know.  Maybe Dr. Y. was on vacation.

I asked the nurse practitioner if we could give me the injection to remove the white cells from my marrow and give me chemo.  No.  I asked if I could have the injection before she sent me home to guarantee I could get chemotherapy the following week.  No.  Why?  I don't know.

Tomorrow, I see a different nurse practitioner.  Tomorrow, I find out if my body produced enough cells to get the green light for treatment.  I don't want to go tomorrow.  Why?
*~*
Tuesday was difficult for me.  I didn't feel listened to by the nurse practitioner or her assistant.  I had more pain than normal (chronic pain is a plague on my existence).  I do fasting blood tests and chemotherapy days are long (I didn't eat for twenty hours).  I counted on completing chemo by a specific date; the finish line helped me hang on.

After recovering from the trip, I had a good week.  No increased side effects.  My husband and I played video games and spent a lot of time together.  I wrote blog posts, made sure a project of mine could continue, and edited my forthcoming chapbook.  I had energy to sing.  There were no naps!  I was me again!
*~*
Today, I cried.  I don't want to feel sick again.  I don't want to lose my ability to think or my energy.  I don't want to deal with another nurse practitioner who dismisses me.  I don't want another bad pain day.  I don't want to make a trip for no reason.

I don't wanna, I don't wanna, I don't wanna!

Know what else I don't want to do?  Leave my husband a widower.  Everything else is temporary.  So, I will go and hope for better things.  Sometimes, that's all anyone can do.

Not Wigging Out

"You're going to lose your hair."

It's difficult to take.  My hair is one of the only physical attributes I like.  If I cut it too short, I cry.  My breath gets shaky when I assess my options.  I ponder wigs close to my natural color and texture.  I think about radical purples and neon pinks.  How will synthetic fibers behave in high winds?  I imagine a gust absconding with my temporary hairdo and giving it to a tree out of spite.

"It doesn't start falling out until shortly after dose two."

My hair thins out for a few days after my second dose, but then it holds steady.  I'm relieved by the temporary stop.  Maybe I won't go completely bald.  It doesn't have to happen to everyone, right?

"Are you sure you don't want hair?"

Gayle bustles around the room, gathering hats and scarves for me before I go to my third chemotherapy treatment.  Everything is free, but I feel guilty taking it.  The disposeable cap on my head simulates baldness as I stare at myself in an oval mirror.  My husband compliments me with each thing I try on.  I leave with a pink gift bag full of things to hide one of chemo's more telling presents.

"Some people just buzz it all off."

My hair almost entirely abandons me after dose three.  I chop off the length to keep it from tangling as it evacuates onto my pillows and clothes.  I now have bare spots and downy wisps like a baby bird.  My scalp is sensitive and hurts for no reason, and I want to shave my head but decide against it.  I stare at my face in the bathroom mirror until I don't care about what frames my fat cheeks and quadruple chin.

"No one will be fooled by a wig when I don't even have eyelashes," I tell my mom.

Eventually, every hair on my body is going to go.  There will be no "hiding" what is happening to me.  I'm not artistic enough to draw convincing eyebrows.  I go outside in my turquoise hat for the first time, and I don't lament my missing locks... I rejoice that I'm still here.

When thoughts of death wake me...

...in the middle of the night, I come to consciousness sharp.  My body startles like birds buckshotted from branches.  I'm in the dark, husband with parted lips by my side.

And, I'm scared.  I fear death.  I've almost died more times at 34 than most people can boast throughout a lifetime.  I've had cancer twice.  Will this be what ends me?

I think of my last conversations.  Did I tell my husband he is my all?  Did my mom and I say anything meaningful to each other?  Will my sister know what a privilege it was to be her sidekick?  What did I say, and did it convey my love and gratitude correctly?

I tell myself I'm still alive.  Still here now.  This moment of anxiety and dread sponsored by a beating heart.  No one is promised anything else.  It's the same promise I was given before cancer:  You're alive this instant... congratulations!

Minutes tick by.

I think of everything I want for everyone I love.  I hold them in my heart and pray for them.  They are my legacy to this world—everything good I've ever done they helped shape a thousand ways.  I hope they can say the same of me.

Then, there are my favorite memories I keep like a mix-tape:  My first kiss at the airport the day after Christmas, singing to Kitty Wells with my mom, shooting bow and arrow in the barn, family camping trips, the walk of a thousand fireflies.  More things, each something beautiful and irreplaceable.  I focus my mind inside a moment that made me feel most whole or moved me.

By the time I fall asleep again, I'm smiling.

Maybe, by the time my life ends, there will be more mix-tape memories.  Maybe there will be more people I hold so close they smudge the glass of my soul.  Maybe fear is a partition my dreams exist beyond, should I choose to seek them.

Chemo: The guessing game

It's time to play, well, no one's favorite game! Guess What?!  It's the game where chemotherapy patients wonder just what the hell is going on.

Questions from this dose include:

Where is the blood coming from?  Toes.

When will I have another bowel movement?  Five days.  Then your toes aren't the only bloody part.

How much hair am I losing daily?  Half an ice cream pail of strands.

Why am I hurting so much?  Chemo, weather front, and an injection.

I'm entering week two (my "better" week of each dose) tomorrow.  I can do this.  I just wish it weren't so rough.

ABVD Cocktail

A = Adriamycin
B = Bleomycin
V = Vinblastine
D = Dacarbazine

These four drugs are in my chemotherapy cocktail.  Each comes with its own quirks or problems.

Supplementary medicines:

Emend = anti-nausea
Dexamethasone = steroid
Prochlorperazine = anti-nausea (as needed)
Ondansetron = anti-nausea
*~*~*
I am finally starting to regain the energy and mental prowess chemo absconded with this past week.  I was zonked, which is something I didn't expect this quickly.  It was difficult to deal with.

But, chemo doesn't stop there!  I also have/had:  Random muscle pains, urinary incontinence, severe constipation, and painful esophagus/stomach.  Some side effects are so bad I'm halfway convinced something terrible is going to occur soon.  My mouth always feels coated in something half-innocuous, half-vile.

I'm trying to mitigate damage as much as possible.  Ice cream helps my burning esophagus (small servings of fairly plain kinds or I get nauseous).  Stool softeners are at the ready.  Warmth helps the muscle pain.
*~*~*
I lack the will to do much right now.  Regulating my body feels like a full-time job, but the end results will be worth it.  I'm holding onto thoughts of life post-cancer.

Cancer vs. disease

If the doctor said you had cancer, what would be your first reaction?  What about a disease?  Would it feel the same?  Better?

Cancer carries a death sentence in most people's minds.  It doesn't matter what stage.  The first thing that flashes through their heads is "I could die".  Or worse:  "I'm going to die."

A disease sounds yucky, but it doesn't necessarily mean fatal.  It sounds like someone is sick and can be treated.  There are various diseases.  Cancer is simply a type of disease.

Words matter.  They change our perceptions and possess different amounts of baggage.  If you can't handle thinking about "cancer", think about your "disease".  You're sick.  You aren't dead yet.

There are more statistics than number of deaths.  There are millions of people who've survived cancer.  More will be declared cancer-free tomorrow.  Hope still... and always.