TREES of TROUBLE

Trees of Trouble
Tall trees of trouble, 
India ink
straws of breath,
my fading voice on paper.

Trouble?
Oh God, yes. 
I am trouble. 
Almost always.

And as side effects set in
I cannot set aside my fear.

My voice is fading. 
And my mind is racing. 
I have so much to do. 
So many things to finish up. 
Before I’m finished up.

My heart is pounding. 
The earth is not grounding. 
Anxiety grips every muscle in my abdomen 
as I lose my grip on my confidence. 

Trouble, oh yes
I fear I am in deep trouble. 

More than skin deep. 
This is lung deep. 
Sternum deep. 
Paratracheal lymph-node deep. 
3 arcs in 10 days. It is deep.

Radiation again. Okay. 
Let’s do this!! 
And then I find out 
they are bringing Covid patients 
in through the Cancer Center!

WHAT?! No! 
Yes ma’am. Don’t get me started. 
Don’t get YOU started—
YOU have ME started
And I’m LIVID and I can’t breathe. 
My two masks are clogged and I cannot breathe. 

Why would you bring Covid patients in through the Cancer Center? 
IN THRU MY CENTER? 

I am freaking out
and I want to get out, 
but instead I have Radiation Day Seven. 
I’ve got to get downstairs or I’ll miss my spot.
And then they will miss ALL my spots.

What elevator did they use? 
We don’t know ma’am. 
Would you like me to spray the elevator?
Yes, please-please, yes.
He sprays 3 squirts with a plastic spray bottle, 
when I was expecting ghost busters. 

And I am livid. Trying to live. And I can’t breathe. 
My double masks let no air through.
I plow forward 
Like a desperate Livid Idiot, 
with no choice but to head down to the “LL”

The True Beam radiation machine waiting to shine on me. 
But the hallways are crowded. 
Patients unmasked laying on gurneys;
Animals from Africa hanging on walls.

And me and my double mask
and my cute outfit
and my livid breathing. 

And my racing heart
and my prayers
and my endless swearing; 
Please please please 
don’t let me get Covid 
from this fucking asshole 
shit-hole mother-fucking
shit-fuck of a place.

Please God of Cancer & Covid 
do not let these idiot-brains give me Covid
I’ve spent the whole year trying to Survive Cancer 
and trying to Avoid Covid 
and here I am at their mercy, God 
and they are bringing Covid Patients 
in through the Cancer Center. 
Through my center. 
The center of me. 

Come on in Ms. Hendron 
they say as if everything was normal.
10 days of radiation, I don’t even know if it was enough. 
But I’ve had enough.

My skin is red and angry
My feelings are red and angry.
And my voice is fading. 
Am I fading?

Doctor, what is the worst possible thing 
that can be causing my voice to fade?
I’m in trouble, I tell her. 
Something’s wrong with my voice. 

She tries to reassure me. 
But she doesn’t know how important my Voice is. 
I count on it. 
Sometimes, so do others. 
Really, I just found it and now I have nearly lost it. 

So I get out my paints. 
I’m going to paint my words. 
Paint my voice. 

I use India ink. 
Permanent.
Fade proof. 
I wish I was fade proof. 

And I use a straw to blow streams 
and strands of ink around my paper. 
If this is to be my last breath, 
then here it is for you to see.

Tall trees of trouble, 
India ink, 
straws of breath, 
my fading voice on paper-
for you to see.

©Flori Hendron 2021

DESIRE

Palm Springs, CA 1974

I Desire Life

Life, I desire you so strongly it’s all I can think about. How to entice you. How to get you. How to get more of you. How to hold onto you. And I pray every night that I will see you in the morning.

Life, I want you so badly that I will go through just about anything to have you. I will cut off my breasts, lose all my hair, hand over my lymph-nodes, take endless rounds of chemotherapy, radiation, surgeries. I’ll suffer pain, upset, fear. I’ll learn new skills, do tons of research, whatever it takes to have you I will do. I want you.

I will give up alcohol and gluten and dairy. I will consider kale. I will exercise religiously and speaking of religion I will paint every day because that is my way of praying. I’m doing this all for you Life, because of my strong desire for you. Don't you want me baby? Don't you want me, ohhhhhh?

Hey, Life, I am the first to admit that for at least 30 years I took you for granted. I assumed you’d always be there for me. And I assumed my desire was mutual. In hindsight I can see I was a jackass, a little too immature to understand you. I took wild risks, taking off for Palm Springs with just my yellow bikini under a pair of cut-offs, some cash wadded up in my pocket. Boy was I living freely in those days. No fear or worry. Just long legs, long hair, long nails and my hazel-green eyes on the lookout for a cute guy with a convertible and some pot and a place to stay. Life, I didn’t value you like I do now, but I did enjoy you fully. And I learned some lessons.

As I matured I realized our desire was not mutual. In fact, I realize that you are so Zen, that you don’t even have desire. You have no attachments. Nothing is personal. You dole out luck on a random basis. You hold nothing too tightly except you hold everything. Pain suffering life death births murders, fortune and misfortune, all the people, all the animals, everything we know or see on Earth---and nothing is too big or too small for your acceptance. LIFE I WANT YOU!!!

That’s what makes you so attractive to me. Your Absolute Zen indifference. I want you Life, even if you don’t want me in the same way I want you.

I’ve tried to embrace your ways; the detachment; the nonchalance but I’m too passionate in my creation. Sometimes I desire the gifts you send me; humans, healers, even the assholes. Sometimes I even desire the assholes. Usually I desire them in my bed. But it’s you I want every day all day.

I want you Life. I want you in all your messy madness, your chaos, your seductive delicacies, your avalanche of good and bad news, and your tremendous indifference. Life, it is you and has always been you that I am after.

LARRY DAVID

LARRY DAVID
January 5, 2021

I walked till I wasn’t angry. It took me close to 3000 steps. Mini was with me the whole time. My hot breath stuck in my hot mask. My whirling brain stuck in an angry loop of relentless mind chatter. 

Why didn’t I bring a power bar? Why didn’t I bring water? Why didn’t I bring gum? All that chatter from the Inner Critic. 

Then 3 words from my Inner Wisdom: KEEP WALKING FLORI. 

Inner Wisdom. 
Being wise is not the same as being Smart. And being a smart-ass is certainly not the same as being wise or smart.

And so, I WALK.  Weaving up and down the streets little Mini trotting at my side. I have so much anger it’s going to take a lot of steps to walk it out. Of all the horrible things this past year, the thing I’m the angriest about is the isolation. I hate it. My Mini dog needs about 13 steps for my every one step, her little head held high above her short little legs and that mini tail curved up like a furry flag. 

I love her but today, everything about her is annoying me. The amount of poop that can come out of one Chihuahua! The number of times she dilly-dallies and stops to smell a blade of grass or worse, and I have to remind her, MINI! we’re getting our cardio, let’s go! Walking in the neighborhood, the workers without masks infuriate me. All the people talking loudly on their cell phones, including myself, insufferable!

Walking and muttering to myself like an old curmudgeon, I’m a real-life Larry David. 
My Inner Wisdom pipes up again. Three words.  
KEEP WALKING FLORI

Riiiiight. 

I’m walking and all the while, my Instacart shopper keeps texting. She’s like a used car salesman. We don’t have the advertised model but we do have this lovely replacement model on special. She’s relentless in her support of things I didn’t order.

“Hi Flori, they are out of So Delicious yogurt, but they have a new one same harmless harvest coconut alternative vanilla flavored...I replaced it with it, and if you would like to try it let me know. It's an amazing one!” 

Huh? Is she tasting food while shopping for me? I’m annoyed and disgusted. 

Text after text. Instacart is giving me a heart attack. Click here if you approve avocados instead of asparagus. May we substitute everything in your fucking cart to suit ourselves? Would you like to chat with your shopper?  I am nearly in tears from this NON-STOP interruption of my Angry Walk.  NO. NO. NO Substitutions!  And thank you for your help today, Nicolette.  My shopper has the name of a 20-year-old vixen. This is clearly not her wheelhouse. 

I keep walking.  And my head chatter continues….
I’m worrying that my step counter isn’t counting all my steps. I want retroactive credit for every single step of my whole fucking life. 

I want double credit for taking the steps to get treatment yesterday. And I want extra credit for going, for staying and for getting home safely. All by myself. Like a big girl. 

Now that I’m thinking about it, I want triple credit for every step I’ve taken for the past 24 years to “beat breast cancer” an unbeatable opponent.  And I want credit plus $13,500 in Nordstrom Notes for the 13.5 years I’ve been on treatment for Metastatic Breast Cancer.  The Unbeatable Beast.  

I am breathing so loudly now, I fear I might burst into tears.  Would Larry David cry?  I don’t think so.  My inner chitter-chatter is off the chitter-chatter-chart.  

I’m trying to walk my anger out. But I have way more anger than I have energy. I may have to take it to the garden or take it to my canvas. I’ve definitely got to take it somewhere. 

Again, I call on my Inner Wisdom.  I’m nearly screaming inside my head. Walking, panting, thinking, begging, breathing and crying.  WELL FUCK YOU LARRY DAVID!

And as if those were the magic words, Wisdom finally descends and I fully understand the Chaos of Life. Message: It’s just not personal. Life is random. Some people have all the luck. And most of us have a mix of luck and un-luck.

The wisdom I bring from 24 years of breast cancer survival is pretty simple. Be Present. Control what you can and let go of the rest. Forgive yourself often; every day if need be. Do not waste time and do not allow others to waste your precious time. Seek your passion and engage with it fully. Process over Product. 

And the whole point of life is love. Love yourself, your family, your friends, your home, your animals. Love what you see, love what you hear, what you eat and love what you do.

Above all, be kind and love one another.

Toothache

Toothache 
Heartache
Dumb Mistake
Or Stomach-ache?

I’m a whole woman
Hard to pin point
One prickly pain from the rest of me.

Hot/cold sensitivity
And what about this tooth?
Yes, it hurts.  
And what about that tooth?
Yes, it hurts, too.

Bite down. 
Does this hurt?
No, I can still bite.
And believe me, I will.

When did the pain start?
On October 12, 1994
When my mother died suddenly.
It got really bad as they lowered her into the ground.

My heart absorbed that pain,
Integrated the tooth-throbbing, the pulse-racing
Right into my own bloodstream.
I had my mom inside
with every beat of my heart
She was there.

The other tooth?
That pain started in 2004, 
When my father died.
It got much worse in 2005
When my marriage died.

I could not bite
I lost weight.  
The weight of a husband.

After a few years, 
I stopped having pain-
until this morning
When tooth pain woke me.
And my ear hurt
It was listening too hard to my tooth.

And then fear got involved
Worry jumped in
Root canal?
What if ONJ?
Infection?

Now my Mind was involved.
WHY does my tooth have to hurt?
WHY now? WHY me? WHY? 

I don’t have a new dentist yet.
My young, old one died. 
Shocking heart attack.
Another loss of 2020

The Endodontist - he will see me.
I am SEEN!

Hello, I am still alive Dr. O!
Yes, I was supposed to have treatment this morning.
But my tooth aches at 3:00am
And I am wide a-woke

And I’m worried.
I don’t know when it will be my turn.
Take my mask off? 
Yes.  When will it be my turn?
I need that vaccine.

Your blue eyes, 
talk to me from above your mask-
So kind and reassuring.
No infection, No ONJ, 
No clear sign of root canal
BUT it might be the beginning 
of a bad tooth.  

Only time will tell.  
Watch and wait.  
That describes the last 24 years.  

At least today I am seen!
You are seen, too, Dr. O.
Gratitude for your reassuring blue eyes.  
I am Watch and Wait.  
See you next week.
A new year.  

The Dishwasher Part 2

The Dishwasher Part 2 
January 1, 2021

For most of my adult life, I’ve struggled with competitive dishwasher loading, competing only with myself and my kitchen. Ranting silently about the poor design, the lack of flexibility and how disgusting it is to touch that slimy pillow soap guy who is often stuck to his friends. Basically, I dump a lot of my daily rage on the dishwasher each night as I tidy up before bed. 

Determined to make 2021 the Year of Normal Dishwasher Loading, after a mere two days of dirty dishes, locked and loaded, I pressed “start”.  

Look at me! I said to my Chihuahua, one day before New Year’s Eve. This is how it’s done! My energy was so overexcited that she promptly looked at me with those big bug eyes and ran out the doggie door. On New Year’s Eve morning I turned off the blinking “sanitized/done” light while I waited for my coffee to brew. 

Fast forward to last night, New Year’s Eve. I began to clean up before heading to bed-- because, like having clean underwear in case you get hit by a bus, you must have a clean house in case you die in your sleep. 

No one wants to be judged after death. Least of all me. 

Adding to my “getting ready for bed” list is a whole new behavior of seeing my home through the eyes of my bereft family and friends. Imagining their (suddenly) unkind and judge-y comments. 

“I had no idea she had this many sets of dishes. How much dinnerware does one girl need? And silver service for (36)! Who polished all that silverware? Forget the dishes, did you see her clothes? All those tank tops? Why would anyone need so many black tank tops? And black sweaters? And black shoes! Did she have a secret career as a mourner for hire?”

“What about all those lightbulbs? Did she have an Etsy store for 20-year-old lightbulbs? Why so many batteries? Also, the LED lanterns, you know she never went camping.  Those lanterns could light the block.  Why did she need such bright light? Look in here--look at all these winter coats? I don’t recall ever seeing her wear a winter coat. Look, this one still has its tag on!” 

My ghost would be going crazy, trying to justify and explain all my “stuff”.  Stop judging me! That coat was for Boston, but travel got cancelled, remember?  And the beautiful dishware was my mother’s and grandmothers’…family heirlooms, I could not part with it.  And the tank tops were on sale. And the black sweaters were cashmere, try one on. They feel like a luxurious warm hug.  And the lanterns were in case of a power failure, or an earthquake.  I had no idea they were so bright but I’m glad they were. They took my whole house out of darkness. And they outlasted me. Just as promised, a lifetime of light. 

The judges continued, eyebrows raised high. “Why so many vacuum cleaners? A Miele, a Black & Decker dust buster from 1990 AND a new cordless state of the art vacuum cleaner, with a million fucking attachments.” 

Yes! My ghost whispers loudly, I could vacuum my whole house, including every kind of flooring surface, and the long attachment slides under the refrigerator, soft attachment on a long attachment arm dusts the ceiling. HEPA filter keeps it all contained. Plus, an extra battery. It was so light and portable. From my friends at Amazon!

The Judging continues. “Did you see all her linens? Was she running an Airbnb?  I thought she cleaned out the place in 2019? Look at all the purses still here.  And the shoes.  And the scarves. Her poor children will have so much work to clean this out.”  

My ghost is flipping out.  Poor children? No, they are far from poor!  And you are all supposed to take something.  A sweater, a scarf, a purse, a vase, a candy dish. Some art. Make a donation in my name to MBC Research. My ghost flies around and around, creating a tornado of chaos!  Trying to get their attention and remind them my wishes. It’s hard to break through to all the bereft.

So, last night, the last night of 2020, in getting ready to be judged in case I accidently die in my sleep, I began to tidy up the kitchen. Rinsing dishes from the day. I open the dishwasher, which by my (old) standards was practically empty, and without much thought I began loading dishes. And then much to my horror, I realized that I just loaded dirty dishes on top of clean dishes!

But it’s not really my fault, although my inner critic circle is sure chatty, laughing and saying that’s what you get for trying to change a perfectly good obsession.  Why’d you run the dishwasher after just two days of dishes, it was at least 1/3 empty? My inner critics circle was harsh. And laughing at me! Those meanies.  And I’m feeling so stupid, right after I was so proud of myself. 

Hey Inner Critic Committee, I silently shout, leave me alone, go away.  I don’t need your voice on this.  So what if I loaded dirty dishes on top of clean dishes?  I will just run it again.  No one will ever know. And even if I do accidently die in my sleep, the Post-Death Judges will be so impressed with the Jenga-style dish loading they will have no reason to judge me poorly!

Here’s to 2021, may we be less judgey and more kind, to ourselves and to one another.

DISHWASHER RITUALS; AN EPIPHANY

DISHWASHER RITUALS
December 7, 2020

Epiphany:
I need help.

I’ve got to stop this weird dishwasher loading obsession. I’ve been aware of this
problem for a long time, but it’s been amplified during the pandemic when I don’t have my housekeeper on a regular basis. And I don’t have a boyfriend on a regular basis.

Guys love tasks. Loading or unloading the dishwasher, taking out the trash, getting the cars gassed and washed; these are all easy tasks that a man can do to please his honey. I despise tasks; they are a waste of time, they are too tasky, too taskish. They take up my precious time, and none of the tasks are forever accomplishments. They are ongoing which takes away any feelings of accomplishment.

Celebrations and Rituals - I love to celebrate but I’m not great at planning rituals in advance. I mean, that’s how it becomes a ritual, you do it again and again.

Well here it is, another 3 weeks have passed and once again I’m spending the day getting my Herceptin infusion. Every three weeks this is my ritual. For the past 13 years. It’s a celebration of sorts because I am still alive to have the ritual. The average lifespan for MBC (metastatic breast cancer) is 3 years. I’ve overstayed my welcome. It takes 6 hours for my infusion because I’m allergic to the drug that keeps me alive, so we run the IV super slow so it doesn’t kill me. And when it runs slow, I don’t have to take premeds such as my be-hated Benadryl or the Fat-Faced Steroid Sisters.

Celebrations and Rituals - I’m just not great at planning in advance. I mean, that’s the whole premise of the bit. That’s how things become a ritual, you do them again and again.

I come by my lack of ritual planning in an honest way. And not to blame my parents for everything even though everything is ultimately their fault. I could have certainly decided upon a more planny behavior. Like my sister who is very planny.

I do have one weird secret ritual - it has to do with my dishes. Actually, just my dirty dishes. I am a secret competitive dishwasher loader. A dishwasher contortionist. I spend more than a normal amount of time (which would be zero) wondering who the fuck designed the inside of my dishwasher? Wondering why all the racks don’t adjust and bend and move and become customizable? Why isn’t the inside solid gumby?

Have the Bosch people ever loaded a dishwasher I wonder? I am a dish-loader-aholic. Every week I swear to myself - I PROMISE myself, for sure I’m going to load AND run the dishwasher every 2 days. MAXIMUM by the third morning latest.

And every week I load and load and load. 5 days and sometimes 6 days and as many as 7 days of assorted rinsed dishes, rearranging and re-imagining ways to fit one more dish, just one more bowl over here, a Tupperware lid snuck in there, oh if I move this plate here and that plate there I could fit one small glass over there.

My dish loading ritual lasts until my dishwasher simply cannot hold one more utensil, not even a tiny butter knife and then I’m finally satisfied. I spin the top spinner, as you’re supposed to do before closing the door. I tuck in the little dish soap Pillow Guy, his belly puffy with detergent and rinse aid. It’s a beautiful sight.

I imagine sharing my fully loaded dishwasher photos on Instagram and Twitter, hashtag Bosch, hashtag ThisIsHowItsDoneSuckers, hashtag MarthaStewart look at me! Hashtag
Flori Knows Best.

Unfortunately, once I’m no longer high on my dish-loading endorphins I crash with the realization that I will have to unload all those platey things and put them away. ANOTHER TASK FOR MY INVISISBLE BOYFRIEND. Honey, COULD YOU PLEASE EMPTY THE DISHWASHER for me? Sure, he answers, and I quickly remind him to wash his hands first, AND I smile, hug him, mouth plant a good kiss along with an ass squeeze. I do have some kitchen skills.

Boyfriend-less, unloading the dishwasher is exactly the opposite of loading for me—I hate it. I will procrastinate and avoid it. I’m embarrassed to admit I’ve used paper plates rather than open that dishwasher door. It’s just so happy being tightly closed at the end of the cycle, its little red light proudly stating SANITIZED!

MY DISHWASHER IS EMPTY RIGHT NOW, and again, like the dish-loader-aholic that I am, I swear I won’t do it again. I promise myself and my tiny dish soap Pillow Guy that I will load the dishes every two or three days max and then run the dishwasher like a normal girl. I PROMISE!!

ROCK BOTTOM

ROCK BOTTOM

BRAIN MRI Monday
I am so scared
No good options if results are poor
Poor me
4 tiny enhanced lesions
4 tiny weeks ago

Perfusion study; the contrast released into my veins
60 miles an hour for 60 seconds of stinging pain

Poor me
Hey, fuck you!
60 seconds of pain is nothing 
Rock bottom in that banging MRI tube
A living coffin

He tries to stuff towels around my head
to keep me still
Oh, uh, NO thanks, I say-
I don’t need those; I won’t move

He doesn’t believe me
“If you move we’ll have to start over”
I won’t move, I answer

I always imagine my head as
A 600-pound rock
Rock Bottom
My head Will Not Move
(Because if I move I’ll have to start over)

Can you please raise my head a bit?
It will help me not feel dizzy
No, he says, the cage won’t click closed
and you won’t fit into the machine

I have a small head, or so they’ve said
You can up the click, you prick, you dick
My head will fit
Fit it will 
I know it’s true, I take a pill
I’ve MRI’d 600 times
Please believe my shitty rhyme

Rock Bottom
I don’t have a WHAT IF plan
And I can’t allow myself to think
Because thoughts make me sob
And sobs make me move
And if I move I will have to start over

Poor baby
Rock bottom and my rock heavy head
and my skeptical technician
who sits in judgment behind the glass 
deciding on my clicks, or if I will fit
Or if I have to start over

Well, I don’t fucking move an eyelash
But I do cry out in pain, Fuck!
When they run the contrast
It races burning thru my skinny vein

And then it’s over
And the voice behind the glass says “good job, 
you did a really good job”
Go fuck yourself- you patronizing prick, I think

And finally, I am done.
IV out, I am escorted back down the filthy corridor
to my filthy changing room
I put my own clothes back on
Purel-purel-purel and I begin my ascent
from the basement to STREET LEVEL

The basement is like being in Las Vegas; there are no clocks
Rock bottom
I still feel so heavy

As I leave the basement and turn on my phone
I see 6 million texts
All from dance friends…

I open the text from my dance partner first:
“I'm guessing you've heard the news about Phil's passing.
Let me know if you want to talk. I'm heartbroken. It's so sad.” 

Rock Bottom
6 million messages of grief and shock
6 million dance friends at Rock Bottom

Phil died? I feel like I’m going to throw up
How can Phil be dead?
Nicest man. Good friend.
Incredible dance teacher.
We just spoke. He was fine.

And now Phil is Rock Bottom
We were just making jokes.
Such a good guy.
Massive heart attack.
And now my heart is breaking.

Rock bottom
The boulder can crush us at any moment

The next afternoon my oncologist texts
I begin to sob. I’m afraid to open her text
Rock bottom
My phone is too heavy

“Regression of the metastatic lesions
with no new lesions identified, exclamation point”
She is happy and surprised

I’m shocked by this good news
Because Rock bottom
Because the boulder can crush us at any moment
And if you move, we will have to start over. 

Nordstrom’s & Clinical Trials

NOVEMBER 2020

Whether I’m buying a $30 pair of sale shoes or a $330 purse, Nordstrom always makes me feel appreciated.

From my earliest shopping memories, their staff and marketing and promo materials are upbeat and all-inclusive. Their shoe department is still unsurpassed by most.  I’ve spent many rainy days trying on boxes of shoes, finally landing on a pair or two. My sales person offering to take my credit card and go ring me up so I can remain seated. What a treat to be offered that kind of service without having to ask!

My shoes come back, packed in a tall Nordstrom’s shopping bag which is then equipped with a special cardboard tube/carry handle. This gizmo straddles the two loop handles and the slim cardboard tube fits comfortably in one’s hand. This makes carrying the shopping bag less painful on your hand. And it allows you to carry more bags.

When they first opened in Los Angeles, Nordstrom had a pianist playing beautiful music. It was so elegant and added so much to the shopping experience. 

Often times they have their own brand of bottled water, which they would offer their shoppers on warm days. They really practiced Customer Service and in a very short time they became one of my favorite places to shop.  They knew how to make their customers feel welcome whether we’re going to browse, purchase, or return, they treat us the same.

Comparing a potential life-extending or life-saving clinical trial to shopping at Nordstrom, might seem like apples and bananas to some. And had I not experienced both, I might tend to agree.

But the thing is, in both settings without ME there would be no THEM.

It’s only in one of these two settings that I am treated with constant appreciation and as if the “provider” values having me in their store, in their fitting rooms, in their clinic, on their trial. 

At Nordstrom’s from the moment I arrive I feel welcome. In my clinical trial, from the moment I arrive I feel judged. The list of trial prerequisites is staggering. In addition to having to have a terminal illness,  I have to provide stacks of records, give my blood, take multiple scans because my most recent scans weren’t taken at the trial facility and therefore somehow, they’re not okay.

It’s all about the sponsor, and not about the patient. My blood work must be taken at the trial facility, even if that is super inconvenient. There’s really no reason my blood couldn’t be drawn locally, a few blocks from my home, and sent to the lab for the appropriate results. But the reason is the financial arrangement that the trial sponsor works out with the trial site and reimbursements and services they are paid for. Patient advocates are working on “decentralizing” clinical trials, but for now the rules remain.

At Nordstrom’s I can buy shoes at The Grove and return the shoes in Century City.  Sales staff smiles and I am welcomed. Nordstrom has worked out the money and credits behind the scenes, to make things easy on their customers. 

There are three phases to most clinical trials and you can find information about these online (see for example, Ancora.ai’s blog on the subject). 

There are also three phases that WE, the clinical trial “customers” need to understand.  These are not anywhere on the internet.  You can learn them through online support groups, or through friends, though other advocates, or as I learned, through trial and error. Pun intended.  I will call them the Insider’s Scoop and share a bit of what I’ve learned.

CLINICAL TRIAL INSIDER’S SCOOP STEP 1 – Clinical trials are an opportunity! Read that twice.

Step 1 is understanding the value of a clinical trial.  Clinical Trials are opportunities and I mean that 100%. Unfortunately, too many people still think clinical trials are a last-ditch effort. Clinical trials are anything but that. Standard of care treatment will always be available. Access to a promising, novel, cutting edge clinical trial will not always be available.  It’s important to understand how a clinical trial can be an opportunity to extend your life. 

One example is here. Ado-trastuzumab emtansine (T-DM1) was the first antibody-directed chemotherapy approved for a solid malignancy (her2+ metastatic breast cancer). A “smart chemo”, the payload released when it binded to the HER2+ cancer cells. 

Patients who enrolled were given access to this trial drug, enjoyed early record success in both disease-free progression and better QOL compared to the chemo arm. This was truly novel and cutting edge. Now the drug is FDA approved. Called Kadcyla, from Phase 1 through to FDA approval has taken close to a decade, except for the people on the clinical trial. They were permitted to continue receiving therapy as long as it was working (this is often the case in a trial). You can read more about these outcomes on Ancora.ai’s Glossary if any terms are not clear, and you can also filter for expanded access programs when you search for trials on Ancora.ai.

CLINICAL TRIAL INSIDER’S SCOOP STEP 2 – Finding the trial drug needle in the haystack.

The second step is how to find a good clinical trial. Clinical trials are not mainstream/automatically considered for you, but this doesn’t mean they aren’t a good idea. If you are lucky enough to have an oncologist associated with a large university or teaching hospital, they often have their fingertips on the pulse of latest and greatest clinical trials. Going to annual breast cancer conferences (SABCS, ASCO) is another way to become familiar with the most popular researchers and doctors in your subtype of breast cancer. Also a great way to meet Breast Cancer Patient Advocates! 

Many search for trials on www.clinicaltrials.gov, a good place to look although it’s very overwhelming and not always up to date. Recently a few new search engines have popped up to help us look for clinical trials.

Ancora.ai is a good one, as is breastcancertrials.org. Breastcancertrials.org will be specific to your cancer subtype, including another site for metastatic cancer.  On Ancora.ai you can search for other types of cancer, not just breast cancer.  This can open up opportunities for finding “basket trials” (tumor agnostic) as well as disease specific trials.  Ancora.ai also automates eligibility-criteria matching so you don’t have to read through a lot of medical jargon to find the right trials. Anyone can use the search to get to relevant trial results in less than 5 minutes. The search results are comprehensive (pulled from the national database), and unbiased (Ancora.ai doesn’t promote specific trials).

Of course, all of the searching requires a lot of focus and persistence especially hard at a time when our disease is having progression and we are likely feeling scared and anxious. If your doctor is low on time and is not familiar with trials, you might have to make your case. This doesn’t mean trials are not a good idea, but they might require more effort from you if you want to pursue them. 

When I was searching, I made a list of the top (5) trials I would consider and printed out the pertinent information.  I then scheduled a consult with my oncologist to review.  She helped me hone in on what she thought would be the top (3) trial candidates.  I then scheduled appointments to meet with the trial doctors.  Which brings me to the next step of getting a timely appointment.

CLINICAL TRIAL INSIDER’S SCOOP STEP 3 – Clinical trial access relies on the patient being EXTRA pushy and persistent. The squeaky patient gets oiled. 

Once you’ve identified a couple good trial choices, the next step is getting on to the trial.  The most effective way to self-advocate is to reach out to both the sponsor and the investigational oncologist.  Each clinical trial has a principal investigator. Sometimes a trial is only at one facility, sometimes it’s at multiple facilities. Understanding the different phases of clinical trials is different than understanding the different steps of getting on a clinical trial.

I have had very good luck in creating a one-page overview of my 24 year cancer health history, my prior treatments, and a note about why I think I’d be a good candidate for the trial.  I email this overview to the sponsor asking them to put me in touch with the investigative doctor.  If the investigative doctor is listed, I will email that person as well, and follow up with a call asking for an appointment. 

When told the first available appointment is a month away, I ask to be put on a cancellation waiting list, saying I do not have a month to wait. I ask if I can phone every morning to see if there are cancellations, and I do so.  I also explain I’m calling about their clinical trial and don’t have a lot of extra time. Persistence is the name of STEP 3.  Ancora.ai can also help with this step, as they’ll contact the site and track down the right contact person on your behalf.

Get comfortable saying that you can’t accept that waiting time and ask to be put on a waiting list and ask to have the doctor call you.  Ask if the doctor has a PA you can talk to and just straight up ask how you get information about this trial sooner than waiting two months!  This is when you play the cancer card with all the nice schedulers who don’t realize that your biological LIFE clock is ticking.

STEP 3 takes leaving your comfort zone and being politely pushy.  Keep steady pressure on, they are busy but this is our life we are fighting for!  Lock eyes on the doctor and call, email and send flowers if it will get you an appointment. 

Once you meet with the trial doctor and they’ve had a chance to examine you and review your history you should have a good idea of whether or not the trial is a good fit for you and why.  This is often when the hoop jumping will begin. You’ll be asked to sign consent forms and you’ll be given a schedule which shows all the scans and infusion or clinic dates. 

To see if you can be accepted into the trial, a scheduler will call you and assign times, days and dates to a variety of scan procedures without taking into account your schedule or your life or your needs. And if you complain, you will get pushback.  So you have to be resigned to being treated poorly even though you are the “customer”!

And here we are full circle back to Nordstrom and their customer service model.  Nordstrom will bend over backwards to get a $12 lipstick delivered to your home and appreciate you the whole time.

Big Pharma can’t be bothered to oversee budgets that they’ve allocated to different institutions to make sure that the customer/patient is being treated properly. And unless we complain to the sponsor they really don’t know our experience or if we are being treated properly since the sites are running the trials day-to-day. The sponsor doesn’t know if money budgeted to give us a lunch on infusion day is actually being used to give us lunch and if money budgeted to pick up our parking is actually being given to us or offered if we do not ask. We constantly have to self-advocate.

Although the vast majority are in the business of cancer to help, to heal and cure, there are just as many who are in it for the bottom line profit and that’s fine. I don’t mind if everybody makes money but at least treat me and appreciate me the same way Nordstrom does – this is my life and not a pair of shoes, so shouldn’t the bar be even higher? 

Just this year the FDA finally started a pilot program giving the patient a direct voice. Some other trial search sites also allow a rating.  Accountability is starting to happen!

I’m all for this. Nothing about us without us.   Nordstrom’s sends an independent email survey asking how do you like your new lipstick? How did we do? If you have a minute please fill out the survey and rate your experience.  We appreciate customer feedback.  FOR A LIPSTICK!

Just once I’d like a survey like that from Pharma!  I want everyone to be held accountable. WE are all supposed to be on the same team!  But when some of us are earning a lot of money on that team and some of us are slowly dying, and are still having to pay our own parking, it doesn’t feel like a very fair team.

I hope for continued improvement to the patient experience in all aspects of cancer survival.  Especially in the area of “customer” service and appreciation. 

And I hope Nordstrom survives the pandemic so one day I might shop there again.  And that my beautiful daughter and I might enjoy lunch upstairs in their restaurant, after a day of mother-daughter shopping and such vital retail therapy.

Last Time I Hugged

APRIL 16, 2020

I don’t remember the last time I hugged someone. Normally I’m a very physical person.  I hug my friends and family hello and do a lot of cheek kissing.

At social dance, we all hugged hello.  Yes, I also washed my hands a lot. But I focused mainly on dancing, enjoying myself and doing the best I could to practice good hygiene as far as germs were concerned. So many of the dancers were oblivious to germs and would come off the dance floor from multiple partners and put their hand into the jumbo potato chip bowl and munch away. I’ve never even eaten at a potluck. I definitely have never put my hand in a communal potato chip bowl.

I would love to be a more carefree person who didn’t feel threatened by dirt and germs. I would love to be the kind of person who didn’t feel the need to wash my hands, moisturize, freshen up, check my breath, check my teeth, powder my nose and make sure I looked presentable.

There were also some dudes at dance who would come back from the men’s restroom and bee line to me, asking for a dance. I would actually ask if they had washed their hands!  I figured the inappropriateness of that question could be more easily forgiven than me risking getting sick and having to delay treatment. Back in those days, I didn’t share my metastatic breast cancer status. I kept it a secret. It was something I dealt with every three weeks at treatment, neatly compartmentalized. 

Those were the early days of dancing at the Hacienda.  I was brand new to social dancing and West Coast Swing. I had just been though a break-up, and was trying to get back my footing, I guess pun intended.  I was also getting certified at Social Emotional Arts (SEA) thru UCLArts, so I had a lot going on to keep my mind in a good place.  Back then I was still teaching my art program to cancer survivors at Cedars.  The hospital wanted me to have a related degree, which is what spurred my SEA training.  In between breakup healing and SEA learning, I would show up at The Hacienda, to the beginner class every week, somewhere between terrified and thrilled. 

For someone who has spent most of her life in West LA in a 5-mile radius, driving alone to the Hacienda hotel near LAX was out of my comfort zone.  In those early days, I couldn’t get the lay of the land.  It was kind of a seedy vibe.  The lights were always dim as you’d expect in a hotel bar.  I wondered--WHO were all these people? Transients? Drunks? Was it a hook up place or worse?  I was out of my element.  I was also worried that someone was going to take my purse. The dancefloor was adjacent to the bar, and I didn’t know if everyone was drunk. I just never felt safe.

For the first several weeks I thought Asya and Tambre were the same person, this still makes me laugh.  Back then, many other dancers seemed like professionals, but now I know the difference! 

Our teachers, Phil and Mindia, could not have been nicer.  They were funny, always teasing each other.  Beginning class was very challenging and my head would feel like it was going to explode by the end of every class. I was so overwhelmed and so confused. Still, I loved the music and I loved the weird vibe.

There was so much camaraderie and general good spirits that gradually over time I realized, no, the people were not drunk. And they were nice. And Aysa and Tambre were completely different people.  And I didn’t need to walk to my car with my handheld mace at the ready. El Segundo was pretty safe.

I remember early on many of the women in the class were so kind and helpful to me. Right away I wanted to be friends with Jennifer.  She was tall and was such a good dancer.  A week later Eni and I fell in love while washing our hands in the bathroom.  Soon thereafter I met Isabell. Then Cheryl. My table of friends was growing. Frank, Alan, Barry, Fritz, Rami. Jane and Steve. I was starting to put names and faces together.  I asked every single partner how long they’d been dancing, something that must have been quite annoying but I was obsessed. Ha! And I was trying so hard to get the lay of the land.

Each week I learned a few more names and made a few more friends. Still, it was such a bizarre way for me to suddenly spend time. I was obsessed with learning West Coast swing and the more I wanted to learn the more I realized what a difficult dance it was. There was so much minutia, terminology I’d never heard of, plus I had never before danced.

After a few months, I signed up for privates with Phil. Each week he would pretty much tell me the same three things not to do and each week I would practice and then I would repeat the things I was not supposed to do.  He seemed to have endless patience, breaking down moves, rolls, and the count.  Eventually I started to learn and grow as a dancer. I also started going to Debbie D’Aquino’s Sunday classes in El Segundo.  There I met Helen and Terry.  Practice was paying off and I finally started to learn the basics.  By that first summer I was dancing at least twice a week plus privates once a week with Phil.

Phil and Mindia’s monthly dances in Lomita were amazing, and it took me months to be brave enough to go. I was so overwhelmed I could barely breathe. Suddenly the dance floor went from 50 familiar faces to 200 people and most of whom I did not know.  Plus the communal potato chip bowl was there, with other snacks, all which scared me.

Soon enough I found my friends, and I found my table, and I started seeing the same people again and again. I realized we were all there for the same reason. No one was overly judgmental. It was only a dance--if you picked the wrong partner how bad could it be? One song, a few minutes.  I started to relax and just dance. 

Month after month I would enjoy these dances at Lomita. Eventually I settled into a carpool routine with Jennifer. Some of my best dance memories are Jen and I talking about our highlight dances, laughing and car-snacking on our drive home.

When the Hacienda closed its doors, our dance community went through a lot of changes. It marked the end of an era, and for many it was an era of many decades. I had only been there a couple years. The Hacienda community moved to Westchester Elks club, and we continued dancing and making the best of it, even though as many pointed out, it was not “The Hacienda”. 

Over time social dancing expanded to socializing. And my dance friends would get together for summer concerts, or to take other dance classes, for parties, for potlucks and just to hang out.

What started as a room full of strangers, outside my comfort zone, has grown into a community of friends and a zone full of comfort.

I know all dancers are suffering right now. Dancing is what keeps us sane, grounded, connected, feeling happy, and feeling loved. And hugged. Hugged!

The physical distance has been so hard for a community used to literal connection.  We work on our connection, to always know where our partner is takes practice.  Sometimes we are required to reset the physical distance with our partner after a certain move is completed.  This keeps the dance looking elegant, stretched and elongated.

We are all being asked to set a very difficult distance.  It is anything but elegant, although it is forcing us to emotionally stretch.  I cannot wait until we resolve our pandemic so we can safely get back to our relaxed atmosphere of social dancing filled with big bowls of potato chips and hardly a concern.  

Shattered Glass

MARCH 25, 2020

I knocked down a very thin double hand-blown espresso glass early this morning while emptying some mugs from the dishwasher.  I froze as it shot off the high shelf and shattered, hitting first my cooking counter, then the stove and finally crashed its way to the floor. I stood paralyzed, horrified at the mess I just made. Shards were everywhere.

Of course, I was barefoot. 

I’ve been mostly barefoot since 1962.  My father moved our family to California, in part, because of how clean and temperate it was compared to the bitter climate swings of New Jersey.  Even as a child I could see it was beautiful here.  Early June, warm and everything so green. I was only 5 ½ but already I loved running around without shoes.  My parents didn’t argue about it, but it was hard for my mom to enforce my shoes when my Dad was also often barefoot. Asserting my right to bare my feet extended through Jr high school, where I’d often take the bus to the beach after summer school every day. Shoes were the first to come off, and after a day at the beach, walking the pier, I have vivid memories of filthy dirty feet.  I wish I could capture that girl now, the one not too worried about dirty feet.  Feeling proud of her callouses from summer days of hot pavement, not afraid of germs, or dirt, or even feeling dirty.  I know by the time we all made it to the beach, we hit the water and washed off whatever grime had followed us to the ocean. 

I can’t blame my fastidious and meticulous cleanliness on fighting breast cancer, and all that has entailed over the last 13 years.  I can only blame my father.

I think I matured and internalized the adult voice of my father; the guttural (and cultural) “ulch” a sound of great disgust.  Plus hearing him mutter “how disgusting” and other such derogatory comments pointing out the horrors of seeing other people who were, in his words, “dirty slobs”.  Even the tiniest stain on a tee shirt was met with disapproval and disdain. 

Message delivered, dad, loud and clear.  Wear clean clothes. Have clean feet.  Or perhaps it was the timing of my sudden boy craze that inspired me to shop for cute shoes and stop walking barefoot so much.  Maturity like enlightenment, can happen in big bunches.

Barefoot, and standing perfectly still in my kitchen, surrounded by glass, I look for the closest pair of flip flops.  Putting them on, I try to mentally hatch the best containment/clean-up plan.  I am not a good cleaner-upper in these situations.  Whenever I make a grand mess, my go-to joke is “well, it’s time to list the house”.  This morning I feel overwhelmed by it all.  And like I might cry. 

This glass is everywhere.  I feel paralyzed - the task at hand, potential deadly tiny shards of glass splintered all over my cook top, the knife rack, the counter, the drawer edges, the bar stools, and the floor.  How do I keep people safe? What if there is a shard embedded in the rush seat of my barstool and it cuts someone?

It was still early for me, well before 8:00am.  Today was a week post my last chemo infusion, my energy pretty low.  My only intention was one small task; empty my dishwasher and instead it turned into marathon cleaning, wiping and containment project. 

While I was cleaning my mind-chatter was loud.  SHARDS! Now into full blown stream-of-conscious-girl, I flash back to a time when Rabbi Klein gave a bicentennial speech and I was honored to provide some original artwork for her slide presentation.  I can recall vividly cutting up my art and reassembling to show these sharp edges, these shards.  Later I know I will look for that collage artwork.

More mind chatter back to my dad.  I realize it is his birthday today, he would be 90. I am laughing to myself thinking that if he walked in now, he’d probably still be wearing those crazy black glasses, plaid short-sleeved shirt with a pocket for his cigarettes he no longer smoked.  He would not be the roll up his sleeves and help me type.  He would likely stand at the doorway and point out shards of glass and other areas I may have missed cleaning. 

More than my kitchen mess, I would love for him to see his (5) grown grandchildren.  I can imagine his face turning emotional, his eyes filling with tears of pride. These (5) kids were the light in his life for the ten years he lived after my mother died.  Two of them mine, and three of them my sister’s, the (5) cousins still thick as thieves.  And now all young adults.  With jobs, degrees, spouses and adventures.  All independent but even so, I don’t think that would stop my dad from issuing safety warnings to all of us.  Trying his best to point out the stumbles we may encounter.  Where to be careful and of what to be careful.  Now I know that’s what parents do.  They try to protect and keep their kids and families safe. 

My dad’s top slogan was “Watch how you go”.  It was said at every departure, in the way some families say “Goodbye, I love you”.  “WATCH HOW YOU GO” the all-time family favorite chant, my sister and brother-in-law say it to me anytime I leave their house and we laugh. 

When we were young, my dad’s line was “watch Mother”.  My mom had a physical handicap from surviving Polio, and we all did our utmost to keep her safe and stay out from under her feet.  To be mindful.  And of course, we always “watched Mother”. 

I sweep and think some more about my dad and can picture his face smiling and laughing.  We argued and butted heads all the time, but the memories that stir are all connected to laughter.  We laughed often.  I’m glad my memories have softened to the good, the smiling, the laughing and the feelings of love.  It gives me hope that someday my own kids will remember me similarly.  With kindness, forgiveness, love and understanding.

The floor is now swept and vacuumed. My counters are wiped clean. I’m confident there is not a spec of glass to hurt anyone who takes a seat in my home.  The knives are all rinsed, the salt bowl emptied and washed.  Sponges and dishes and containers line my windowsill, soon to be soaked in sunshine. My kitchen windowsill has become the emotional autoclave of my home.  A safe space to further disinfect potential bits of corona-virus I may have missed. 

In the late afternoon sun, the top of my sanitized barbeque becomes an outdoor autoclave; all adding to my sense of false security and what I need to survive.  This barbeque sun-clave further sanitizes my broom, the dustpan, some Tupperware bowls, and the dog’s food bowls for safety sake.

All the sweatshirts that I wear to walk my dog hang outside from the gazebo.  Airing out in the sun, killing any random corona-virus.  I am obsessed with fresh air, “opening up the house” and airing things out.  It is reminiscent of my childhood in a vague way, perhaps my mom used to open up the house, to let germs out and fresh air in.  My own house, with every window and blind open, letting fresh air in, another sense of security.  I take deep breaths and open up my lungs.  I figure it cannot hurt.

Little did my dad know, when raising me with all his worries, that he would prepare me to be more careful, more diligent, meticulous and yes, a bisel mishuga (little crazy) about cleaning and washing my hands.    

My father led by example; every night we set the dinner table with a white folded paper napkin under the fork, Emily Post style, to the left of the plate.  Many nights my sister and I would need more than one little paper napkin, especially for a meal like lambchops, corn on the cob, chicken drumsticks, and the like.

Every night, when clearing the table, my father’s napkin remained in place, pristine.  He’d hand it to us, laughing.  Unused.  He ate with his knife and fork.  His hands were clean and meticulous as always. His nails always trimmed, filed, clean, groomed. Immaculate.  It’s a high bar but turns out its timely and important.  Glad I’m a clean freak like my dad. Glad my kitchen is put back together, and it feels safe and germ free. Glad my emotional autoclaves are holding up. I can use all the support I can get. And glad for that shattered glass and all the memories it crashed out of me this morning.  Happy 90th birthday, dad.  I miss you every single day.

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