THE SUGGESTION BOX IS CLOSED

Good news / bad news. My esophageal stent was removed last week and thankfully all of the horrific pain has resolved. That is the very good news.

The bad news is swallowing is an issue and it’s going to limit greatly the time I have left.

The good news is I do have some control over how and when and I’m looking into those next steps.

The bad news is that a lot of loving friends, family and community have a lot of their own anxiety and feelings and needs and think this is the time to share those with me. It is not.

And a lot of well-intended messages, texts and calls are hitting my inbox with way too many questions, for which there are no answers.

Since this is my Prelude to Death, I get to call the shots. And one of them is that I don’t wish to have conversations where I have to hear anybody else’s anxiety, speeches or feelings of shock. You’ll have to manage your own emotions.

We’ve had years for these conversations. Now is not the time to ramp up on how you are feeling.  Surely not the time to text constant messages. It’s too much for me.

Email is best.

This is a time that is strictly about me. My one and only death. And all the support you’ve offered and all of the times you’ve showed up—in so many ways, is what sustained me and helped get me to here. Gratitude for so much love, support and good times.

This is where I’m at right now and that may or may not change.

I’ve never died before so taking things day by day and often minute by minute.
Same for my immediate family. We are still in this together.
I love and appreciate all of you❤️

Fighting to Keep my Balance

I’ve got one foot on the ground
And one foot in the grave

And time is standing still
I need more antibiotics
My lungs hurt

Which doctor do I message?
Oncologist?
Pulmonologist?
Gastroenterologist?

Interventional gastroenterologist?
Palliative care?
Nurse practitioner? (My favorite)

I have a new concern; my teeth hurt.
Frantically googling all my new meds. Which ones cause teeth pain?

Meantime the box of morphine sits like a cheap box of wine—ugly, unopened. Shamefully pushed to the back of the meds group. Directions - take x ml per mg per kg per body weight. What?

Nothing about morphine is simple. I leave the box sealed and hidden.

I’ve got one foot on the ground and one foot in the grave.
Off-balance.

Beautiful text messages roll in. I try to keep up but can’t. I feel and appreciate the words. I lean into them. Let them pull me out of the grave and back to firm footing.

I’ve got one foot on the ground and one foot in the grave.  Maybe that’s what we all have. Maybe I’m just feeling the unsteadiness, bridging two realities.

My daughter is uploading photos to the group album. “Mom do you want me to edit out the pics where you’re in pajamas, in bed and not looking well?”
Facetune my Cancer? Brilliant!
I laugh at the thought of Glamming up my Pre-death.
Nope. It’s your album. And this is where I’m at.
In pain. In pajamas. In bed.

The majority of my life tells a different story, but the advances of late disease with this awful pain has zapped my strength.

Jude doesn’t care. He likes my big fluffy bed.

He brings all his favorite stuffed animals and toys into my room. And climbs up next to me in bed. And decides to finally try vanilla pudding. He’s surprised and calls it
apa-see-ah, which is how he says ice cream. Nearly all his words are changing from baby language to people language. He is fluent in Spanish and easily uses the two.

Balexa! Balexa! He’s now in the kitchen, shouting at Alexa. We were painting with dot paints and I made up a song about the dots.

He wants “Balexa” to play this “new” song. My daughter tells him that Yama made it up. But he keeps asking, so she cleverly plays “Who let the dogs out” and we change the words to “who let the dots out”. Instant hit and the song was on repeat the rest of the afternoon.

Anything that makes him happy makes me happy. The evolution of 20 months of photos shows my deep love for this little boy.

Yes, you can see the fat-faced steroid sisters all over my face. And the chemo killing rapidly dividing cells, all over my bald head.

But you can see that most days I had good-enough energy. As you can see lately that my energy is leaving. And pain is making an appearance.

One foot on the ground, and one in the grave.
I’m fighting to keep my balance.

Dying in 14 Days

Small cups empty of pudding fill my kitchen trash.

A big change from the fresh fruit & vegetable peels, yogurt and other healthy foods.

I’m fixated on dying in 14 days

Problems have come up so quickly.

I don’t like the Doctor who “installed” my stent.

First, I thought he was being very mindful going over a variety of scenarios with me.

Now I see it as kind of odd rambling, nervous, not  confident, mumbling, talking out loud in front of me, but not really talking to me.

After recovery, I ask him, what can I eat and when?

Liquids.

He said, be careful, don’t eat mashed potatoes.

I don’t want mashed potatoes.

I don’t want you to eat anything too thick. I don’t want you to swallow the stent I don’t want you to push the stent down.

Swallow the stent????????????

When can I have soup?

Thin soup he said.

Gina asks, can she have chicken broth or potato leek purée or butternut squash soup?

The last three days I’ve had hydration. An IV with saline slowing dripping in to keep me hydrated. Alive.

Hydration is not soup.

He looks at her blankly and says “I’m not good with soups”.

They don’t have a hand-out sheet on what foods I can eat when. I’m getting conflicting information.

And the pain in my chest feels like sharp burning swords. My pain level is about an 11. Maybe even a 15.

I try counting the burning spasms of pain. Thinking if I count, I can focus on the count and not the pain. It hurts so bad that my ears hurt. Stabbing, burning. Knives In.

In recovery the first thing to hurt were my eyelids! Burning burning!They apparently put tape on my eyelids during surgery and then ripped the tape off.

I wake up complaining about my eyelids, feeling raw, burning. I can’t blink it hurts so much.

Gina has some Aquaphor to put on for me.

Then I realize I have a fat lip, and big bruises on my cheek. What the fuck? What the fuck happened in that OR? How could they be so rough with me? I am a human person. This is Cedars-Sinai.

Jimmy Fallon is so cute. He’s on mute, in the background doing his usual lighthearted comedy. He understands the assignment. And he’s great company tonight. While I write. Trying to sort and make sense.

10 more days left to live. I am fixated on that number.

I don’t know how this is going to be OK. Incredible pain from the stent.

I imagine a thin silky tube, maybe a pretty color, going into my esophagus. Holding it open against the stricture and patching the hole into my trachea.

Something body friendly. Feminine. Purple.

But then I looked it up online and almost died right then and there.

it looks like an 8 inch piece of garden hose. Its thick and ugly and worse—it’s lined in metal mesh. Braces for my esophagus. No wonder it hurts like hell. Burning burning stabbing. The pain is atrocious. I can’t manage it. It’s metal scaffolding inside a garden hose. Why didn’t I ask to see it beforehand?

I text my oncologist and tell her my pain is not managed. Help help help.

Palliative medicine calls me back quickly, thankfully, and says I need liquid morphine. Just for this acute phase.

I never take narcotics. He said I really need to take some morphine it will help me. I said I’m too scared. I don’t like how these medicines make me feel.

He said I could drink more viscose lidocaine — every three hours if I want. OK I say I’ll try that and I’ll try adding Advil to the Tylenol.

And my son runs around and fills the morphine, but I don’t think I’m gonna take it.

And my daughter says, mom you might need to take some morphine, it could help you. And I said OK I’ll try.

But I knew I wouldn’t open the box. I can deal with the pain. I can’t deal with feeling out of my mind, or feeling nauseous, or feeling dizzy. Or SWALLOWING the stent. Because what the actual fuck??

And this is how my ending seems to be going. Even though in 26 years, I’ve never known another person living with metastatic breast cancer, who suddenly couldn’t swallow or eat.

And this is how my ending seems to be going. Triple negative breast cancer, spreading like wildfire.

And this is how my ending seems to be going. Even with my mom’s sage advice. “Don’t write the ending”, I can read it.

And with all these crises, I haven’t been able to get enough Chemo and I’m not sure that the chemo I have had and the chemo I’m going to have will be enough In the 10 days that I have left.

I am in dire circumstances. Mostly it’s the pain right now. Maybe tomorrow will be a better day. I just don’t know.  I can’t really deal with any of this. Too much pain. Too much grief.

And I hate goodbyes.

THE BED IS A DEAD GIVEAWAY

The bed is a dead giveaway.

It looks nice enough with its fluffy white comforter, soft white sheets, and linen upholstered  headboard.

But then, too many throw pillows, a jumbo heating pad, a sleeping wedge, Kindle in the bed, phone in the bed, TV remotes in the bed. All signs of someone not feeling well. Someone who can’t even reach their own nightstand.

Yesterday, while waiting for my infusion, IV already veined in place, vitals already taken, blood draw sent to the lab and returned with flying colors, I reached for a sip of water and felt some kind of a crack and a shooting pain in my right clavicle area.

And just like that, everything changed.

My nurse and Nurse practitioner were called. Heat packs were cracked. And I was sent for x-rays down the hall, thankful for this technology that lives right in the same office as my oncology practice. As my dear nurses and doctors.

Seven painful views later, the radiologist determined there was no fracture, which is great news but meanwhile I can’t move my arm. Likely due to annoying cancer growth, plus hard lymph nodes - gosh it’s all a mess.

The biggest mess is my esophagus, which has a blockage, and so I am on a pure liquid diet. And in the past two weeks, the blockage has become worse, because I went from a soft diet to purée to liquid.

I can barely swallow water. The good news is it’s fixable and on Monday I’m scheduled to have it fixed. This will be my second endoscopy in less than a week. That’s lucky during a time of busy offices with appointments often months away.

My first endoscopy this past Wednesday, showed that I had a severe stricture, a kind of a little fucky closure in the esophagus, very very close to the top of my throat, which is why I can’t swallow any food past that point.

My gastro doctor’s office is on my street corner, so it was easy —I walked up alone to his building which also has a surgery center.

The check in staff could not have been more welcoming. They were all nice and treated me like a normal person.  The team inside was gold. My nurse, patient and kind. It was very crowded and very busy. Yet they remained professional and efficient and the place was clean. And everyone had masks.  My doctor stopped by and said “Flori, I’m so glad we’re doing this.” He is one of the kindest people on this planet. And best doctor.

Soon they wheeled me into the OR, arranging me on the same table as I arrived. Turn onto your left side, here is a warm blanket, here’s a pillow for you to lean back on, can you put your head here, are you OK, are you comfortable?

The anesthesiologist was standing by and she said she’d give me some propanol and it would be very fast acting, and without combining any other drugs, I would not have any hangover. Okay sounds good, I say.

There were many voices and a lot of protocol being covered so I lay quietly and waited. And I felt a warm hand, lightly rubbing my shoulder and I thought what a kind and human gesture and took a big deep breath and relaxed feeling a little less anxious.

I wondered who had their hand rubbing my shoulder, and then I realized it was my doctor. See—kindest human.

Healing does not get better than that moment.

NeXt I heard. OK, Flori, I am going to give you the propanol now, and I could feel medicine running into my IV in my hand, so I unclenched my hand, giving it an easier time flowing in.

A few minutes later I was in recovery. And the news was delivered; Flori I am shocked. With your swallow tests being normal, I wasn’t expecting a blockage. You have a stricture and will have to see someone from Dr Lo’s team.

“I’ve already texted with your oncologist and Dr Lo’s NP and asked that you be seen this week. He’ll either dialate or stent or both but they’ll get you swallowing again”. So many people working on my behalf, I am grateful.

I am also hugely relieved that there is some thing they can fix. Because my money has been on modern medicine for the past 26 years. So many talented surgeons, oncologists, physicists, radiologists, specialists, orthopedists, researchers, scientists, and yes, even big Pharma.

They all played a part in my 15 1/2 years of surviving metastatic breast cancer.

My goals now orient towards quality of life. I’ve got to be able to swallow because I’m hungry and I want to eat food! My secondary goal is to go after this fucking cancer again. A new drug, called trodelvy. I’ve done one infusion and I really need to get going on it. But swallowing takes precedent. It can hopefully be improved quickly. New chemo is a longer game. I’ll need several cycles to see if it’ll work.

Yesterday my plan was to get another infusion, but instead, I had this weird crack, sound and intense pain and everybody running around to see if I broke my clavicle. Which, thankfully I didn’t. But something happened to my right arm which is now mostly out of commission.

Thankful I could talk things through with my nurses and my daughter and an executive decision was made—hold treatment until after throat procedure scheduled on Monday.

So that’s where I’m at. Throat on Monday. Rest on Tuesday. Back to chemo on Wednesday. Fingers crossed it all somehow works out.

January 21, 2023 © flori hendron

small sufferings January 2023

small sufferings

sand inside your shoe

glass shards

a splinter in your finger

no food or drink after midnight

waiting for test results to show up on your chart

when you know damn well they are available.

being told to change into a gown

“I’ve been told don’t ever change”

and no one laughs

because there is no comedy

drinking barium in the X-ray room

small sufferings,

the list is endless.

calls not returned,

impossible appointment times

and the waiting!

so much waiting

small sufferings,

time, my precious commodity

I’m constantly giving it away.

spending it in ways I don’t want to.

small sufferings

is living with a disease that is a sneaky time robber.

metastatic breast cancer - terminal

the ticking of my life clock drowns out every other sound.

except maybe my staccato heart

small sufferings,

my anger on the inside,

leaking out my pores,

a resident of my face

dimming my smile.

small sufferings, not feeling well enough to go dance, to go out, to live “my life”

as if there is a choice of whose life we get to live

small sufferings

a small tumor presses into my small esophagus

FUCK!

food won’t swallow

poor poor purée me

crisscross Applesauce

all pills emptied into sauce

or crushed

like my soul

small sufferings

(not so small this week)

i am hungry

ensure? have I tried it?

i may kill the next to ask.

HAVE YOU TRIED IT?

I want to scream.

instead I answer politely.

small sufferings

no one knows what to do

no one knows what to say

least of all me.

©FPH January 2023
Waiting for Trodelvy

Cadaver Kin

SEPTEMBER 9, 2022

I kiddingly asked my doctor if he thought I might know my cadaver, the one whose skin I’m temporarily wearing. The nurse said doubtful, the cadaver skin comes from New Jersey.

I’m from New Jersey I said! So for the past week I’ve been thinking about all relatives, the ones who died these last two years and wondering if I could possibly be wearing their skin.

The list of family members I’ve lost who lived in New Jersey is long. Mostly first cousins of my parents, all in their 80’s.

Obviously I know that donated bodies take quite a while to process and this cadaver skin is not peeled off a dead cousin and put on me. It is treated and processed and closer resembles a perforated Band-Aid than a piece of skin with a freckle or a mole. But I talk to it anyway.

Harold, is that you? I can’t imagine it’s you, you haven’t cracked one joke. But maybe you’re anxious because you know the skin is temporary or maybe you’re overcome with joy getting to be in California one last time, getting to meet Baby Jude.

Harold, I’m so sorry for this facocktah weather. I know you would hate the humidity and maybe that’s why you haven’t said a single word. And I’m sorry we haven’t gone to the beach, but I really can’t be in the sand or ocean right now. I’m supposed to stay home and just wait.

Next week this piece of cadaver skin gets exchanged for a skin graft. Yet another piece of me will be cut, removed and relocated to a whole different body zone.

Luckily the skin on my inner bicep is silky soft, hairless, and smooth. On Wednesday, a two-inch flap of my innocent inner arm will be moved to just below my throat, where the volcano used to live. It will replace the temporary cadaver cousin I’ve been wearing. It will be sewn by the best plastic surgeon in Los Angeles, Dr Handsome.

And hopefully in the couple weeks following, I will heal up, the stitches will dissolve and only some faint scars will remain. They don’t bother me. I have many scars. Reminders of my resilience.

Once healed, I will be thrilled to be able to wear my necklaces that I love so much and triple thrilled not to have that shameful cancer volcano bubbling on top of my skin.

And then a few days after surgery I’m due for another infusion of the clinical trial drug.

I feel rushed and overwhelmed but this is how it has to be. It’s not a slam dunk procedure. All done in between my infusion schedule, so I don’t get kicked off the trial. Crazy.

So—my plan is to TRY. Try to get thru the surgeries. Try to show up at the infusion center. Try to let my friends take care of me and help. Try not to lose my mind with all the sitting around waiting. Try to push thru all the feeling not so good. Try to get through this next phase of breast cancer-killing.

My goals are simple: get through surgery, heal, finish editing my legacy book, produce my book, orchestrate an open studio art sale and sell a bunch of work to make room for new work. Paint and create as much as possible, get the new variant booster shot, start going to small social gatherings, travel to see my nieces, travel to see my family in Florida, travel to see my son and daughter-in-law up north and spend as much time as I possibly can with my grandson. It’s an ambitious list but it’s a list of somebody living life. And that’s what I intend to do.

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

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.

The Call to Hell

OCTOBER 14, 2020

Barely two years after burying my mom, the phone was ringing.

Yes, ringing. It was a landline. A beautiful, clunky, Band-Aid-beige push-button telephone. And it was loud. On purpose, so you could hear it throughout the house and answer it.

It was June of 1996 and my dad was over, as often was the case after my mom died, having dinner with us. “I’ll get it” I said as I got up from the table and grabbed the phone. I was expecting this call.

A few weeks prior, while in the shower, I had felt a tiny, hard, pea-sized lump in my left breast, really almost in my armpit. I had fibrocystic breasts and was very familiar with the lay of the land. This thing was a new development.

So, I went to my Ob/Gyn, because once you’ve had a baby, you really only ever see your Ob for all things medical. I don’t even think I had another doctor back then. A pediatrician for the kids and the Ob for me and I guess the dentist.

My Ob sent me for another mammogram, and the radiologist came out to talk to me. That’s never a good sign. He said I should have a biopsy and was going to call my Ob to follow up.

I walked outside, shouted FUCK, burst into tears, and kicked some random car tire. I was surprised by how much it hurt my foot! I also had an instant knowing--I had cancer.

I was referred to a brilliant surgeon, Dr. A. One of the kindest men I’ve ever met, even if he had hair plugs. He did a thorough breast exam, and said “Flori, whatever this is, it doesn’t belong in your body so I am going to remove it”. Well, remove it like it’s cancer, I said to him. “Then you know something I don’t” he replied. After the outpatient biopsy he said he’d call me with results.

Sitting around the dinner table, hearing that phone ring, I knew that call was for me.

 “Flori, the good news is we caught it early. It was very small and the 5-year survival rate is over 90%" He must have said more, but my ears disappeared.

FUCK I’m thinking. All eyes are on me, but the ones I see most clearly are my father’s. Thoughts are rushing through my mind, it’s the first time I’m glad my mother isn’t alive. And at the same time, I want my mommy. But I’m the mommy now, so I take a deep breath and put on a slight smile and I turn to face my kids and my father and my second-hand-husband. Taking a deep breath, I repeat “the good news is we caught it early.” I’m going to be fine. Let’s finish dinner.

I don’t remember the air being sucked out of the room, but I remember it being sucked out of me. I don’t remember anything else about that night. I don’t even think my stupid ex or my own father asked me any questions.

And because I seemed in-charge and seemed okay and seemed confident, they all got to keep their bliss and their blinders on. They did clear their throats a lot, the way men do when they are choking on their own emotion.

My head was starting to scream. I had just lost my mother; how much more could I endure?

And the Calls kept coming. Biopsy showed clear margins but close. Dr. A. wanted a wider excision. And a lymph node dissection. More surgery. I hated answering that fucking phone.

Good news-- All lymph nodes are negative, Flori. Bad news-- Small cancer was an aggressive little fuck, although those might not have been his exact words. More calls with bad news; hormone negative, and HER2+ both are associated with a poorer outcome.

And then the worst news of all - I had to do chemotherapy and radiation. FUCK!

I now had an army of doctors. In addition to the Ob/Gyn, the pediatrician, and the dentist, I had an oncologist and a radiation oncologist. I had two second-opinion oncologists and a second-opinion surgeon and a plastic-fantastic surgeon (easily the best-looking doctor in my army).

HOW could this be happening to me? I was only 38! But I took it like a “warrior”. I channeled all my fear and anger into surviving. Chemo? Sure, bring it on! I was sick as a dog. Every day.

Radiation, burning off my skin, sure, bring it on.

I also had a Chinese medicine doctor for weekly acupuncture and herbs. He was the only honest doctor on my team even though I was scared of acupuncture and herbs at the beginning. Each week, he’d write the herbs down, and I’d look up every single herb (in a book!) to see if there were contraindications or if any of them were dead animals, bugs or weird toes. Each week my trust in him grew, and the acupuncture helped to soften my anger, and let out my heat and whatever else he said was wrong with me, my qi, my stagnation, my liver energy, my yin, my pale tongue, my wrist pulse, and my third eye.

In general, I was raging angry, and this served me very well. FUCK YOU cancer, I thought again and again! I have to raise my kids. I will do whatever it takes.

 Yes, of course, I answered the call to adventure. And I’m still answering it today, every day.

Even when that call is a lousy text.