A Little Shock, No Awe

From The Desk Of Ty Creighton

Dearest Reader,

Before anything else, thank you for opening this envelope.

Under this website’s Rare Letters tab you will find letters that combine into The Penis Monologues (TPM). I want to speak to the TPM name; why I started the Monologues and explain how the letters intend to strike directly at the silence associated with cancers. Penile Cancer comes with obvious issues of gilt, shame, denial and many other emotions. These often slow or prevent early diagnosis and treatment. Penile Cancer shares these and other deep concerns with cancers and other illnesses. So while the initial focus of the letters is male cancers I will include letters where I some commonalities we need to shed light on.

Rare illness can make a person feel exiled from ordinary language. It can leave patients, caregivers, and even good medical people standing in the same room without a shared way to say what has happened. That silence is part of what led me here.

This collection of letters was ignited from that silence.

The title Penis Monologues may remind some readers of The Vagina Monologues, and I understand why. That work helped pull private, intimate anatomy out of taboo silence and place it under bright, honest stage lights. I respect that. I am glad I had the opportunity to attend a performance some years ago. It helped open my eyes.

But this collection comes from a different place. It comes from rare cancer, altered anatomy, masculinity under pressure, pathology reports, infusion rooms, wound care, dark humor, and the strange private weather that arrives when illness enters one of the most symbolically loaded parts of the body.

I did not begin this collection to imitate anyone. I began it because too much of this penile cancer experience remains trapped behind embarrassment, euphemism, ignorance, and the reflex to look away.

So I chose letters.

A letter can go somewhere a speech cannot. It can sit beside the bed. It can wait quietly on a table. It can arrive in the hands of one person and say, without spectacle, I am speaking to you. That matters to me. These letters are meant to be personal, even when they are public. They are meant to carry witness from one human being to another.

Some will be written from the patient’s side of the bed. Some will be written toward the disease (aka ‘Squam’ in my case). Some will speak from the big infusion chairs, from the wounds, from the long nights after treatments, from the hands of those who care for us, and from the places medicine reaches but language often does not.

If you are a PSCC patient, I hope these letters offer companionship and help you develop sharper questions for your care team.
If you are a caregiver, I hope they honor what you have carried, including what no one saw.
If you are part of a medical team, I hope the Letters return some human connection to the procedures, the scans, the dressing changes, and the difficult conversations.
If you are a researcher, I hope they remind you that every target, assay, cohort, slide, and endpoint eventually arrives in a living body, in a frightened household, in a real life. All of you, as a team, will be recognized in the Letters for your role in improving care.

That is what I want this collection to do.

Not to shock for the sake of shock.
Not to borrow importance from things taboo.
Not to make the body into a spectacle.

I want these letters to make room for a more honest kind of care and support for individual journeys. Healing is central to my journey.

Our shared rare tumor culture is not only clinical. It is emotional. It is intimate. It is bureaucratic, lonely, absurd, tender, frightening, and sometimes unexpectedly funny. It is made not only of scans and pathology, but of mirrors, marriages, partnerships, ports, scars, sexuality, sleep, waiting rooms, language, and the ways people learn to survive what they never imagined they would have to name.

This missive (aka letter) collection stands apart because it comes from that exact rare space.

It comes from a place where masculinity, anatomy, illness, and medicine are forced into close quarters. It comes from a world where silence can deepen suffering, and where the lack of humane language can become its own injury. It comes from the belief that art can sometimes carry what explanation alone cannot. I hope my art opens eyes, because Early Eyes Save Lives.

The goal of these letters is to separate real care from the stigma, ignorance, and compassionless reflexes that our culture still attaches to intimate illness. Let’s give patients/caregivers a strong new voice that focuses on the best possible outcomes, while shedding society’s taboos.

We need to evolve beyond our biases to a place where healing guides us.

If these letters help even one person feel less alone, less ashamed, or more clearly seen, then they have already begun to do their work.

I see you.

Ty

Personalized Antibody-Drug Conjugate Therapy

Let’s talk about getting in a trial. No, not a legal trial, a medical trial for a possible new cancer therapy. Yes, that’s what gets my attention and offers some hope right now.

“Personalized Antibody-Drug Conjugate Therapy Based on RNA and Protein Testing for the Treatment of Advanced or Metastatic Solid Tumors” (The ADC MATCH Screening and Treatment Trial) (NCT06311214) Phase II

This trial is based on pioneering research by Dr Chen and her team at UCSD. The research is moving into the medical world with three “arms” or sub-studies. Each one targets a different part of cancer, including TROP-2 expression like I have. Dr. Choy and Dr. Vu are leading the trial team at Moores Cancer Center at UCSD in San Diego.

I had a Tempus Assay, which I have written about before. My Tempus shows I have both TROP-2 and one other target that the trial (aka study) are looking for. Each of the three sub-studies applies a different medical solution. For the TROP-2 Cohort, SN-38 is used (a chemo therapy). The brilliant part is that the chemo will be driven to the cancer cell by an antibody, with the chemo attached using a “linker.” When the antibody attaches to the cancer cell the “payload” of chemo is injected and it disrupts the cancer’s ability to divide, and that means PSCC death— that’s our hope.

So how do I get into this trial?

First, my Oncologist orders a Tempus Assay, which means a blood test to me, and a sequencing to the doctor. The sequencing calls out my TROP-2, which my doctor then can match to a study. I was excited to hear there is a study right at my hospital.

So how well do I match the cancer receptor the study is looking for?

Here’s a little background. When a report says 2+ or 3+ by IHC, it is talking about how strongly a cancer target shows up when the tumor is stained and examined under the microscope. Think of it as brightness. 0 is little to none, 1+ is faint, 2+ is moderate, and 3+ is strong. So when my report says I may be 2+ / 3+ by IHC for TROP-2, it means my cancer may be showing enough of that target on its surface to get the trial’s attention.

For me, that matters because this is not just a technical footnote buried in lab language. It is one of the ways doctors decide whether a tumor may be a real match for a targeted drug. In plain English, 2+ / 3+ means there may be enough TROP-2 present for the treatment to have something real to grab onto. That does not mean guaranteed success. It does not mean automatic entry into the trial. But it does mean the signal may be strong enough to move the conversation forward.

The important catch is that my Tempus report is making a prediction based on RNA expression, not giving the final word. The trial still wants confirmatory IHC testing from its own central lab. So for now, I read this as hopeful but unfinished: not proof, not promise, but a real signpost.

In cancer land, sometimes that is how the next door appears—not flung open, but outlined in enough light that you know where to walk. Watch this space.

—Ty

Nodes of Fun!

I am in a holding pattern until we see the next Signatera assay and the next CT scan. This is not an easy place to be, because there is a difference between waiting passively and waiting with purpose.

I am using this time to research possible next steps, including what the enlarged hilar nodes seen on my last scan might mean, how they should be watched, and when they might need more evaluation. I do not want to overreact, but I also do not want to drift.

My goal is to arrive at the next appointment better prepared, with clearer questions, a stronger understanding of my options, and a plan I can review with my oncology team.

—Ty

Tempus In a Teapot

In simple terms:

A Tempus assay helps turn a tumor from a mystery into a molecular profile.

A cancer diagnosis often begins with location: where the tumor started, where it has spread, and what can be seen on imaging. But cancer is not only a location problem. It is also a biology problem.

That is where a Tempus assay can matter.

A Tempus assay is a specialized molecular test that looks more deeply at the cancer itself. Instead of asking only, “Where is the tumor?” it asks, “What is this tumor made of at the genetic and molecular level?”

These tests may analyze tumor tissue, blood, DNA, RNA, and other biomarkers. They can look for mutations, gene fusions, immune-related signals, and other molecular changes that may help explain how the cancer behaves. In plain English, the test is trying to build a more detailed profile of the tumor.

That profile can help doctors think through several important questions:

• Could there be a targeted therapy option?

• Could immunotherapy make sense?

• Are there clinical trials that match this tumor’s biology?

• Are there biomarkers that change how we understand risk, treatment, or next steps?

For a rare cancer like PSCC, this kind of information can be especially important. Standard treatment paths may be limited. The evidence may be thinner. The next decision may depend not only on what appears on a CT scan, but also on what the cancer’s molecular fingerprint reveals.

A Tempus assay does not guarantee a new treatment option. It does not replace pathology, imaging, surgery, chemotherapy, radiation, or clinical judgment. But it can add another layer of intelligence to the decision-making process.

For me, that matters.

I do not want to treat blindly. I do not want to wait passively. I want to understand the biology of my cancer as clearly as possible, so that when decisions need to be made, they are made with the best available information.

And in cancer care, especially rare cancer care, better information can mean better questions, better planning, and sometimes better options.

I wish you well in your journey.

Ty

A Friday Night Poem

I lived in Hawaii for three years. My family was sent there by the US Navy. Dad worked on the CINCPACFLT Admiral’s staff.

I was in the 6th through the 8th grades and only wore shoes for church at Makalapa, and when we went out to dinner. I went camping in the Koʻolau Range once a month, and spent a lot of time on the beaches, and snorkeling in Hanauma Bay. A little brown boy that loved being a part-time Kamaʻāina.

I was remembering so many wonderful times there, and I wrote a poem today, a Friday Night Poem, that I want to share with you.

A Friday Night Poem.

Verse 1

Sun wake slow on a Samoan tin-roof day,

McGrew Point breeze helping the palm trees sway,

Turn on J. Akuhead Pupule--da' bro’ is da’ best,

as I am trying to wake from my island nest.

The trail’s been rough and da' nights been long,

but sorrow don’t always get the final Kamaka song.

I reef my sails when cancer waves pound,

joy still glows—when I remember Old Koloa Town.

Verse 2

So I step outside with my stinging feet,

shakin’ off a little sand and midnight moonlight sleep,

I hear KGMB radio play,

something sweet for our souls today.

The mainland keeps spinning with its headlines,

its crooked deals and its warning signs,

but Island mornings still paint the windows gold,

while my humble heart for another rebel day is bold.

Chorus

Bob's not my uncle but I did hear him say,

“Don't worry, be happy,” and that’s how we pray.

So I carry that line when the skies go gray,

like a jar of fireflies you keep for a day.

Not every burden will float like foam,

not every lost beach boy comes back home,

but if I can smile while Big Iz sings,

I can still find grace in the little things.

Verse 3

The keiki run where the hibiscus grow,

my barefoot wisdom comes when my trade winds blow,

and the old men smile on the La Nigh out back,

they knows what the broken-hearted lack:

Not riches, no, and not escape,

but a slower breath and a stronger shape.

For me it's a tune to hold when the day gets hot,

My cancer lyrics remind me what I almost forgot.

Bridge

“I put the lime in the coconut” like Harry said,

shaken not stirred—James Bond (unsaid).

Clip-clop rhythm of the rain and the Cane Toads,

echoing joy along the rusty red dirt roads.

Hear the Trade Winds whoosh at the noonday sun,

wild and warm and built to run,

Island music starts with daily rain,

turning three years of memory into refrain.

Chorus

And every beat says life goes on,

even after the dark, there’s another dawn.

So let my memories carry the load,

let offbeat humor light up my Haole road.

Let the slack guitar drift in the breeze,

let the kamaʻāina chorus harmonize with ease.

I’m not saying my hurt just fades away,

I’m saying love songs still asks us to stay.

Verse 4

To stir the poi pot, to share the Portuguese Sweet Bread,

to lift our eyes up to Madame Pele instead.

I was brown and barefoot during my three year stay,

and that’s why island music in dis’ heart always plays.

Because my lungs, though scarred and sore,

so far have survived the squamous roar.

Even with no breaks my soul soars strong,

Turning my chemo aches into song.

Outro

So if you feel weary, come sit awhile,

I’ll trade you your dreary for a poem and a smile.

And when our summer sunset cools the land,

and evening lays its softer hand,

we’ll hum one truth till the stars appear:

joy is resistance, my friend, right now, right here.

Not someday far away, not when all is right,

but now, in the middle of this fight.

You can't wait until everything is good someday.

Find and eliminate your every delay.

So sway with the breeze, let your spirit play—

And nay, don’t worry about me once Again Dear Friends...

Life is short I have heard--The End.

Hilar(ious) Or Not?

My hilar lymph nodes have become one of the main areas of focus in my cancer surveillance after thoracic surgery to remove a metastatic PSCC nodule from my left lower lung. Hilar nodes sit deep near the center of the lungs where the bronchi and major blood vessels enter and exit. In my most recent CT report, the radiologist described the left hilar nodes as “mildly enlarged” and “indeterminate,” meaning they cannot yet say with confidence whether the changes are simply related to post-surgical inflammation and healing or whether they could represent early nodal metastatic disease. Right now, these nodes represent one of those difficult gray areas in cancer follow-up where careful monitoring, repeat imaging, and informed questions matter more than rushing to conclusions.

One reassuring detail is that these hilar nodes did not show FDG uptake on my recent PET scan. FDG stands for fluorodeoxyglucose, a radioactive glucose-like tracer used during PET imaging. After it is injected into the bloodstream, the body treats it similarly to sugar. Cells that are more metabolically active—such as cancer cells, inflamed tissue, healing tissue, the brain, or even muscles—absorb more FDG than quieter tissues. Once FDG enters a cell, it becomes partially trapped there long enough for the PET scanner to detect areas of increased activity. The radioactive component of FDG, fluorine-18, has a physical half-life of about 110 minutes, meaning the signal gradually fades over several hours as the tracer decays and is cleared from the body through the kidneys and urine.

The absence of FDG uptake in my hilar nodes lowers concern, but it does not completely eliminate uncertainty. Enlarged hilar nodes after thoracic surgery can sometimes be reactive, meaning they are responding to inflammation, healing, or immune activity rather than active cancer. At the same time, the radiologist noted a slight increase in size, which is why these nodes remain an important area to watch closely on future imaging. For now, the lungs remain the new focal area of my surveillance—not a reason for panic, but a reminder of how much cancer follow-up often lives in the space between reassurance and uncertainty.

Tracking PSCC - CT

We are tracking PSCC using CT scans. We have seen the PSCC get to the left lung (left lobe) and a nearby lymph node. This new CT seems to suggest all the PSCC in the lung has been resected. At the same time, the report puts a cautionary focus on the hilar nodes in the central area of each love. Small changes are noted, but these changes are “indeterminate” meaning the CT is not returning enough information to say this is inflammation or metastasis of PSCC. This points to the need for very close attention to this area, through Signatera assays and frequent imaging. I will develop questions from this report for the Thoracic Surgeon and my Oncologist.

The encouraging part of this CT report is not just what was seen—but what was not seen. The report states there is “no convincing evidence of residual or recurrent neoplasm” along the surgical margin where the left lower lobe metastasis was removed. There are also no new suspicious lung nodules or masses, and no evidence of disease below the thoracic region. Big picture, that matters. After everything that has happened over the past year, I do not take that lightly for even a second. My “bits down there” remain safe for now, which is very good news. Reading through this report, I do not see giant red warning flags suddenly going up flag poles. I see a scan that is cautious, watchful, and focused on continued surveillance rather than immediate alarm.

The biggest unresolved question in this scan involves the left hilar lymph nodes. These are lymph nodes located near the central structures of the lung where the bronchi and major blood vessels enter. The report describes them as “mildly enlarged” and “indeterminate”, meaning the radiologist cannot confidently say whether the changes are simply reactive from surgery and healing, or whether they could represent nodal metastatic disease. One reassuring detail is that these nodes did not show FDG uptake on the recent PET scan, which lowers concern but does not completely eliminate it. What I take away from this is focus. The radiologist is essentially saying: watch the hilar nodes closely. There was a small increase in size noted, but that increase could come from post-surgical inflammation just as easily as cancer activity. For now, the lungs remain the new focal area—careful observation, close imaging surveillance, and continued attention to what happens next. I am reassured I have Signatera assays as a new and import part of my surveillance tools. My journey continues. I wish you strength and peace in your journey. Keep asking questions and advocating.