January 2025

When the Words Won't Come
by Stephanie Kemp


It is a Sunday.  
6:23 am.  
This is very late for me to be waking up on a Sunday, or any day.

I hear my husband upstairs.
I smell coffee.
I want both,

But first I have to write something(s) down.

I am looking out the window at the wisps of baby clouds starting their days, trying to decide if they want to be white or grey. (I miss/ed the pink.)

Who do I want to be today?
Who do I get to be?
What should I…….

The holidays are over.

Am I going to write the thing(s) down?
Is it true that the words won’t come?
Or do I just not want to record them?

Is it words that landed me here?
It is easy to blame them.

Too much time curled over my computer.

Too much worry about whether or not they are the right words, stories, poems.

Too much time inside -

Our house.
My head.
The past.

Not enough movement.
 
Forward.
Physical.
Emotional.

I have known this for a long time, but ignored it. (These feel like important words to record.)

Look outside.
Get outside.
Be outside.

Birds are chatting but not screaming, cars can be heard beyond the canyon in deep background, also happy that today is Sunday. There is no honking, no blanket of freeway sounds, no furious train conductor pulling the alarm to warn of an impending crossing, in case that one driver (rushing, or high, or suicidal, or simply distracted) thinks they can make it just in time.

Where are you, words?
Which ones do I need to type?

Maybe start here, Stephanie:

All of These People are Me:
(scared person, distant person, funny person, needy person, angry person, euphoric person, curious person, young person, old person, patient person, frantic person, flawed person, trying person, trying person, good person, hopeful person, anxious person, human person)

Aim to end here:

Stet.  
(Don’t worry, I didn’t know what it meant either: "Stet is a Latin word meaning 'let it stand' used in proofreading to indicate that a previously marked change is to be ignored." It basically means to ignore everything and everyone except yourself and trust your gut.)

See what happens in the middle, but don’t bury the lede:

“You do not have an ulcer. You have Double Hit B Cell Lymphoma. It is aggressive, but treatable and curable.”

(Also in the middle, don’t forget to breathe.)

In addition to writing challenges stemming from my chemo brain (this is a very real thing!), I truly can’t type (the tips of my fingers are numb and tingly from a chemo side effect called Neuropathy). As an added bonus, my eyes are chronically watering and/or bone dry, trying to poke their way out of my head in a synchronized pattern, similar to roasting lamb on a spit. But I can (and will!) curate and edit (and share!) what I have already written - you know, over the last four years while I was hunched over the computer, writing.

Especially since I go back on the chemo bag (her name is Rosie) tomorrow. (I named my chemo bag…See what I mean about All of These People are Me? Need to add: dorky person, childlike person and/or childish person, even though naming my chemo bag actually came from a very brave person.)

I miss writing.

Maybe I can write outside.

And join the clouds in figuring out who I want to be today.

(And tomorrow and the next day and the……..)

ps.  I just looked out the window. (It is 6:52am.) The clouds are gone. No time to waste. I am going to the car wash even though the winds are coming.

________________


A(nother) middle of the night poem:

Hide and Seek

Here are things I hide behind:

My hair
My words
My jeans
My mind

But there’s not enough room, so I’m not going to try it…
If something is real I'm not going to dye it.

Now, every night, I make peace with my core*…

"I m sorry.”
"I’ve missed you.”
"We will win this war.”

*the tumor was hiding behind my abdominal wall.
________________

I am currently in the middle of the 2nd treatment of six 3 week cycles.

(Unfortunately, Week 2 of each treatment cycle makes me think this whole Winning the War thing might not be true, but maybe that’s why Weeks 1 and 3 keep rolling back around, protecting the flanks.)

I have named the weeks of treatment:

Week 1 (where I get the actual chemo):

"ROSÉ ALL DAY" (since I have Double Hit Large B Cell Lymphoma - this means I get chemo 24/7 every third week on a cocktail called R-EPOCH. It is a more aggressive form of treatment for a more aggressive type of lymphoma - separate essay, but still “Treatable and Curable,” which is what you hold onto, hopefully and hopefully.)

My chemo bag is big (one liter that gets hooked up on a Monday, refilled on a Wednesday and removed on a Friday just prior to an additional bonus drip at my infusion center to kick off the weekend.) The liquid is the exact color of rosé, though much less fun. I (obviously) named her Rosie after the wine, but I also thought it was important to make her feel included and like she is wanted. (I could also have named her Strawberry Pedialite, but that didn’t feel as festive, even though Pedialite is delicious and it is important to stay hydrated!) Rosie made me lose all my hair within the first month, but she also comes with a 200mg daily dose of prednisone, which is sort of fantastic in a bonkers I can do anything! sort of way. Because of the prednisone, you might even see me out in the world with Rosie. I might be puffy and pink cheeked, but you will still know it’s me. So will I. 

Rosie lives in a super cool ND black over-the-shoulder satchel that I can only wear over the shoulder after 1/2 of her has drained into my body, otherwise she is too heavy and makes my back start to hurt. You would never know I am attached to a chemo bag unless you see the clear tube coming out of the bottom of the satchel and snaking its way up to my chest port from under the bottom of my shirt. Sometimes if there is too much slack in the cord it looks like Rosie is hooked up to my vagina. This is less than ideal for obvious reasons, but at the end of the day we are all in it to win it and to date, no-one has ever been brave (or rude) enough to ask about it. (Or maybe no-one has noticed, or they just happen to be very happy or distracted, out there in the day to day living of their own lives).  

On an audio note, every sixty seconds or so Rosie purrs like a mechanical kitten as she makes her way through her tube into my chest. (I might have to revisit this to see if the sound description is actually accurate, but I think it is and will always love kittens no matter what.)

The first week of cycle one I was in the hospital for seven days, as the doctors needed to see how my body responded to all of the drugs. (It did great. And I actually had a fantastic time in the hospital because my faith in people was renewed - another separate essay.) It happened to be the week of Thanksgiving but I made my husband take my daughter on a pre-planned trip to look at colleges in Boston and then meet our other daughter at my sister’s house in Connecticut for turkey and Lions. (I ate noodles and rice in my hospital room with my in-laws, who ate potato chips. We had a blast and I am not kidding.)

Week 2 (where the chemo actually works inside of my body):

"BLEAK WEAK" (more on this later, but it is TERRIBLE and might need a new name. Maybe something like HOLY MOTHER FUCKER ARE YOU FUCKING KIDDING ME WEEK)

Mostly I sleep and try not to be mean to any/everyone unlucky enough to be around me (including me). Pedialite (grape is also delicious) is the only person place or thing I (consistently) love during HMFAYFKM Week.

I don’t actually want to talk too much about Bleak Week (plus I can’t, because I mostly sleep and don’t remember anything), but there is one important side note —  If you see me in a wheelchair please know that it used to be my husband’s grandma’s and I loved her and wanted to keep it just in case I ever needed a wheelchair. If I did, I knew I would feel better and stronger and more hopeful and in tact knowing she also once sat in it. (As an added non-cancer based bonus, we also used it several times as a dolly for our low budget film projects, many for Sesame Street!)

https://stephaniekemp.com/Sesame-Street-selects

I actually wrote a song (you will know the tune) in case you ever see me in my wheelchair (especially if we never got to connect that time I wanted to tell you in person or over the phone that I have cancer but that it is “treatable and curable.”)

If you see me wheelin’ down the street,
And you (or I) start to cry
Each time we meet,

Just say hi……
And walk on by.



I sing this not to be mean or unkind, but if  I am on a walk in my wheelchair I don’t want to cry with you. I want to look up at the sky or the trees and just focus on my breathing and all the things I see. Plus you and I both deserve more than to be trapped in unnecessary sadness or OH FUCK WHAT AM I SUPPOSED TO SAY HERE?

On a more optimistic Bleak Weak/Potential Wheelchair run-in note - you might also see me walking next to my wheelchair, or pushing my wheelchair pusher in it. (My legs still work fine, I just get really winded and out of breath during Week 2. It is almost guaranteed that I will want to be outside moving around and seeing things for longer than my legs and most of the rest of Bleak Week Me will want to humor me for.)

Still (and as always if you are on the lookout and/or you are lucky enough to have access to a wheel chair), there are bright spots…..even during Dreaded Week 2. (I will try to think of some and circle back.)

Week 3 (where I feel like the real me and sometimes even feel like dancing!):

"WINNNER WINNER CHICKEN DINNER”

(Alt: “WHAT WOULD STEPHANIE DO?”although this feels a little pompous…)

Week 3 is a gift from God (or whoever is in charge, probably my doctors and science).

I feel like myself for almost 7 days.

There is so much I want to do and see that I become almost paralyzed with hope and the threat of normalcy.

I don’t want to talk about cancer or who has had it!
I don’t want to catch up on the news!
I don’t want to have turmeric tea at cocktail time!
Who cares why I look so good in these 501s from my early 20s!
Casa Bianca for Everyone! (Pizza AND Pasta al Forno AND  probably even some chianti!)

If we go for a walk this week (with no chemo bag or wheelchair!), I only want to hear about your day or your kids or your mom or your work or where did you get those boots.

If I go to the carwash this week, I will splurge for The Lava Wash and even include the neglected Way Back in the post drive through DIY vacuuming. I will have a great time at the car wash and miss my dad. (Full disclosure: these last two things are always true at the car wash, even without cancer.)



If I get to touch the ocean with my feet this week (or any week) I will be very quiet or really, really loud.

I will remember, this week, how it feels to feel the best kind of:

Excited
Bored
Tired (from doing too much!)
Curious
LEAVE ME ALONE I AM THINKING (or writing, or planning, or procrastinating)
What kind of cake should I make for no reason?
Do Lou and Charles need banana bread?

I might even (almost) wish I could have salad. (I can’t eat raw vegetables, or fruits that don’t come in a “natural case” or soft cheese, or sushi, or some other things I’m forgetting - but it’s basically just like pregnancy eating.)

I LOVE WWCD/ WWSD!!!
(As an added bonus, how handy that the acronyms are so similar, just in case I can never decide which Week 3 name I like better!)

________________


Pps. Please remind me that I said all of this…especially if it is Week 2…Or just wish me luck…and remind me that at least the poems are trying to come back, God love them…this will help me remember that they are (and you are…..and I am) trying to share my way through this.

Shhhhhh….(A True Story)

Sometimes I like to sit alone.*
Sometimes I like to stare.

(This makes some people nervous**……Of this I am aware.)

It’s just that sometimes all life’s noise
can make my whole mind numb.

I need some space and silence
to invite new thoughts to come.

I might see a total stranger stop to smell a fading flower…
I might feel bad for the that midsized kid who just ate something sour.

I might wonder where that bus is headed, once the light turns green….
I might lock eyes with a passenger until we both feel seen.

I might wonder about my writing……(should I always take out “that”?)
I might wish (for the ten thousandth time) that I could be a cat.

When I look around I see things - both beautiful and hard,
They might hide in separate corners, or co-exist in one backyard.
And, sometimes - while I’m sitting - I make a genius plan….
To change the world (or just today), then realize that I can.

So if you see me sitting still, or looking out in space…
(And wonder why there’s nothing in my hands or in my face),

I hope you have a great day, in wherever it may lead you….

And that you’ll find a million things
That feed you and/or need you.

*Walking around alone with nothing in your ears is also an excellent way to find space…….or silence……..or genius.

**This includes me.
________________


January 6, 2025 (“The Next Day”)

I can’t find my glasses (it is 12:49am)
The phone keeps turning sideways (it is 1:55am)
I should never try to write middle of the night notes (or anything else) on the fucking phone.

But writing by hand isn’t working out so hot either:


I didn’t sleep (it is 5:33am).

My husband needs to sleep.
How can we sleep together when our sleep needs are total enemies?
I want to sleep with my husband.

This ramble started after a dream where Nicole Kidman (or was it Samurai?) was doing a shoot in Marfa Texas, wearing cowgirl boots from Target defending her face. Don’t judge her! I screamed to myself in my dream head. (Siri autocorrected to “Samurai.” I was trying to type “Annie O,” my daughter’s friend who also has gorgeous red hair.)

My brain wants out of Chemo Camp. I can’t write, read, watch anything, listen to anything……nothing sticks. I can’t remember what (just) came before.
Thank you poems. I will show up for you if you promise to keep trying to knock.

________________

Also, Stephanie, in case you have a non-chemo brain window, maybe you could write about:

“A Dog Got Locked in a Dressing Room…” (Another true story)

“Christmas was Beautiful and Perfect and Hard. I am Unbearably Sad but Impossibly Grateful….” (Or maybe I am sad AND grateful…it is not the same thing.)

“Big Girl Boots: Needed to Create and Protect Internal Space While Facilitating the Necessary and Non-Negotiable Life Skill of Lane Splitting.”

“Lane Splitting 101: Not the Motorcycle Kind”

(…Or you could also just wait for more poems to come.)

________________

7:30am (still January 6, 2025,  if you can imagine)

I have to put lidocaine (numbing cream) on my port and then go get Rosie. I am out of special band aids so I will cover it with Saran Wrap so I don’t get goo all over my shirt. (I haven’t worn a bra in months - heaven!) I will sit in my infusion chair for 5 hours and actually have fun because I love my nurses (Stephanie, Kristen, Chloe). I might ask if I can adopt them, even though they are grown women. I will definitely have them over for dinner (a lot) and keep them forever.

After today I will go back Wednesday to get Rosie refilled and then head back again on Friday for for her to come off for two weeks. But before they let me leave, they have to infuse me with a final drug that is separate from my take home cocktail and try to hydrate me so that I don’t spend the the weekend with (among other things) nausea, vomiting, diarrhea, loss of appetite and/or bladder and kidney side effects. As an added bonus (and right before I get my parking validated), they attach my belly bomb (a 3”x 2” rectangular plastic box that sticks to my stomach for 27 hours until a needle shoots a drug called Neulasta (or is it Udenyca?) into “the fattiest part of the tummy” to boost my white blood cells, so I don’t get any kind of infection and/or possibly die. (Not kidding - the invention of Neulasta or is it Udenyca was a total game changer for cancer patients. My neighbors Joy and Francine told me this. They are oncology nurses and I love them.)

January 7, 2025

TUESDAY.

It is a gorgeous morning, but the winds are nuts. I took Frances to school wishing she wore pants. (Her dress was more like a shirt, but I’m not going to say that because it will make me sound like I am 57). I walked a mile (4.5 laps on our cul de sac) but had to go inside when my beanie almost blew off into the canyon, threatening to take all the synthetic hair attached to it (and me) with it.

It’s actually scary.  And I am not a wind sissy.

I caved and send Frances a text. (She declined my offer.)



________________

…..It is now Wednesday, May 14, 2025.

I never revisited this attempt at documentation because the fires hit that night and I completely forgot I had even started this monologue. The last thing I remember from typing it was that I was pissed Siri put an unnecessary apostrophe in Santa Anas.

The week of the fires we evacuated 3 times (first from our house because of the Eaton Fire, then from my sister and brother-in-laws’ house because of the Sunset Fire, and then from our final stop with family friends because of the Palisades Fire.)

The week of the fires my Pasadena hospital and infusion center shut down because of the Eaton Fire, so I spent the week with my father-in-law (he is a retired oncologist) chasing treatment, going to several different hospitals to get Rosie off and flushed (first stop), then refilled (second stop), taken off again (third stop), then infused/hydrated/belly bombed (last but not least stop).

The week of the fires (and for many weeks after that), there were no clouds in the sky deciding who to be. No clean air (or anything else) to take for granted. No people unaffected.

I was lucky that week both in the cancer department and during the aftermath of those terrifying flame fueled days of what truly felt like Armageddon.

So was my family.

I have several friends who lost their homes. I haven’t spoken to them because I don’t know what to say. Many of them never even knew I had cancer. (I had my last chemo on March 13 and my remission is being monitored in a clinical trial to see if it holds.) I am not sure if this is the real reason for my silence, or if I just can’t bear to take in the level and depths of their loss.

I will reach out. I just need to figure out how to begin.

Especially because I (still) can’t find my words.

And I am (still) trying hard not to be scared.

For the first time in my life, remembering the sky doesn’t save me, it suffocates me.

I know this won’t last.

Because I (and it) will keep trying.