Tuesday, October 29, 2013

How to Talk to Cancerman

Constant Reader, I have a few dear friends who have expressed—with admirable honesty—that they do no know what to say when they see me. This post is my attempt to address that situation.

I recognize in advance that I'm...different. I think different. What works for me may not work for others. With that written, I share this with you for two reasons:

  • Some of you don't know how to talk with me while cancer sits in the room with us. This is a guide.
  • Some of you will find yourself in a similar situation.
    This is food for thought.
If it works for you, share and enjoy.

If it doesn't, please give me feedback.

I am not alone in my journey—we're in this together.

Teach me.

Cancer sucks the suckiest suckage that ever suckily sucked.

It throws grenades into your comfort zones and prances merrily away, singing an off-key, off-color song of joy and despair. Cancer is The Joker; but it's more ruthless.

I know conversation can be awkward. It works both ways.

Well-meaning people ask me, "How are you doing?"

What am I to say?

Here are some of the answers I've found myself giving:
  • Fine!
  • I'm surviving.
  • Really?
  • How are YOU doing?
  • OK.
  • I'm pounding nails into the floor with my forehead.

I never know how I'm going to answer. On a few occasions, my mouth responded while my brain considered, and I was surprised to hear that someone had something to day. It's weird to hear yourself as a third party.

So, in the interest of making this a little easier for both of us, I offer a few guidelines.

At no point will I be snarky or sarcastic. I may be direct—uncomfortably so—and I may be funny—terminally so—but I respect you. I won't dishonor the gift of your time and attention.

Though, I may poke fun at us both.

A little...

Own It.

You're uncomfortable. You're scared—maybe for me, likely for you. If you visit me in the hospital, you'll see needles and tubes and bags and scars and god-knows-what-else.

Own your discomfort. Own your fear. Nothing is quite so awkard for me as to sit watching and listening to a friend mumble and bobble and wheedle around their discomfort—as though I would be offended.

You can't offend me.

You can make me uncomfortable.

So, I say to you with absolute honesty and respect:
Process your process somewhere else. If you can't deal with it; I understand. Please be honest with yourself. Recognize what you can do, and what you can't do. Own your limits.

I would help you if I could. But I'm going through hell. I don't have the energy to help you.

Ask for the Word of the Day.

I was on the phone with a dear friend. She said:
How are you doing? Aw, man, that was dumb...I'm not going to ask you that anymore. You know what? From now on, I'm going to ask you the word of the day. So, What's the word of the day?
She did all of that without breathing. Caffeine: it's not just for breakfast anymore.

I thought it absurdly clever. What a great way to approach the situation! It takes all the pressure off me (to respond), yet it communicates concern.

And it allows me to say what I need to say without detailing it. Among my responses thusfar:
  • Oi!
  • Relieved.
  • Ouch.
  • Fuckity fuck fuck.
  • Cool.
  • Love.
  • Frustrated.
  • Little Angels.

So, if you can't think of anything to say, we can play the "word of the day" game.


Deal with it.

Faeces occurs.

I have yet to have a single moment of "Oh, woe is me!"

I have not asked the fates "What have I done to deserve this?"

It's not where I am or where I plan to be.

If I can deal with it, so can you.

It sucks.

It really, really sucks. That's absolutely true.

So, let's agree that it sucks. Now, let's move past it. I can't change it, and neither can you. Let's work together to deal with what is in front of us—not what might have, could have, should have, would have been.

We're here. Now.

Let's rock this town.


It's funny.

I'm going to be on STD. That's Short Term Disability to some of you.

To others, it's Sexually Transmitted Disease.

Laugh. It's funny.

I have one testicle. People still bust my balls. I ask them to "stop busting my ball".

They stop, confused.

Laugh. It's funny.

After my RPLND surgery, all the surgical fluid had to go somewhere. Gravity means it goes...down. And what's down? Yep. Ballsack.

I awoke one morning to a scrotum the size of a grapefruit, and sitting on top of it...a penis the size and shape of a Roma tomato.


It's funny.

It's allowed.

And it's needed.

Speak Your Truth.

Say whatever is honest for you. It may be a conversation stopper, true. But it may open up new channels of thought, it may grow our relationship.

You. Don't. Know.

The single greatest gift you can give me is your honesty.

Speak it.

Don't Waste the Opportunity.

Life's too short to drink cheap wine. Or beer. Or scotch. You get the idea.

I could be dead in six months. So could you.

If I've been a bastard toward you; if I've screwed up our friendship, or hurt you in some way, now's your chance. Let me know. Give me the opportunity to make things right.

I have some things to say to some of you. I plan to say those things. I have nothing to hide and everything to gain. Same goes for you.

Let's live these moments like they matter.

They do.

Don't Be Pollyanna.

If you tell me that everything will be OK, that everything happens for a reason, or any such platitude, mean it.

A lot of people use those phrases in the absence of anything else to say.


I don't need it, and I don't want it—if it isn't real.

If you truly believe it, rock on! Say it! Own it!

But don't say it to me to convince yourself. That's cheating.

Have faith in your faith.

It's a beautiful thing.

Be Positive.

There will be times that I can't see the good.

There already have been times when people have said to me: "You'll have the chemo, and you'll kick its ass, and in the long run you'll be fine."

And I've responded thusly:
Good. Hold that for me. Keep believing and saying that. I can't. It's not me. I'm not wired that way, so I need you to do it for me.

Do it for me.

I appreciate it.

Respect Silence.

Not every silence is an awkward silence. Some of the most precious times we will spend together are those when we are comfortable in our quietude.

We spend a lot of energy filling the silences between us.


Let's enjoy the time we have together.

Be Ready To Talk About Anything.

I see a lot. I hear a lot. I read a metric shit-ton.

I retain a lot, and I piece it together.

I see life as a grand jigsaw puzzle that comes in an unmarked box. There's no photo to guide me, but that  doesn't stop me from gathering pieces and fitting them together, forming an image. It's one of life's joys for me.

And I do love to talk about the interconnectedness of all things.

Look, I'm no great pop-culture gossip maven. Which Hollywood starlet sleeps with which Hollywood starlet ain't the stuff of my interest (unless there are photos...'natch!). Stories are.

You have stories. Some are fascinating. Some are crap. But they're all yours—and that's what matters. You see, in my soon-to-be-unfuzzy head, your stories and my stories and his stories and her stories all mash together, and together they become my world.

I just read something today that captures it brilliantly:
Tom:  It's— It's a story. It's just a story, man. It's not worth dying for.

Just a story? Tell that to the greeks who fought at Troy, Tommy. Tell the women burned as witches. The Rosenbergs. Sacco and Vanzetti. Tell the Martyrs of all the religions and the millions who fell in all the wars since time began! Stories are the only thing worth dying for!

Tell me stories. Tell me lies. Let's piece together this puzzle we're living!

I'm going to say shit, deal with it.

I'll be sick. I'm going to be in my own private corner of hell.

I will be hurting. I'm going to say things. And I'm going to mean them.

I hope I am not hurtful...or mean.

In the moment they come out of my mouth, they will be a kind of truth, though they may not be Truth.

Don't be offended; or at least, try not to be offended.

I'll plead the Puck defense:
If we shadows have offended,
Think but this, and all is mended,
That you have but slumber'd here
While these visions did appear.
Drugs affect people. I'm going to be on some spectacular drugs. Please know that inside that fog...is me. I'm there, struggling.

Please give me the benefit of the doubt.

When in Doubt, Be You.

I appreciate any time or attention you can spare for me. Connecting with you—even tenuously—helps me to connect to the big, wide world. When you're as alone as I am going to be—alone in my pain and my illness—that connection is everything.

So, be you. I like you. I might even love you. And that counts for a lot.

At least for me.

What will be will be what will be.
We've go this.

Sunday, October 27, 2013

Whither Wheelsucker?

Constant Reader, a lot is going on right now. You have been more than a little patient with me, and I deeply appreciate all the support you have shown—by merely reading.

The quick update is this:
I begin receiving the TIP chemotherapy regimen on Sunday, November 3rd on an inpatient basis at Georgetown University Hospital.

That sentence says much. That sentence leaves out so very, very much.

What have I been doing?

I am doing the business of real life in preparation for a long anti-vacation. And I am forming my care team and care plan. And I'm working through the things I need, the things I want, and the things I need to set aside.

And I have been living life—enjoying the Little Angels, enjoying time for me, and enjoying my friends and family.

But, I am behind on my blogging. I have between five and ten posts in draft form. Some may be combined, some may wither and die.

I do not plan to let Wheelsucker Diaries wither.

Wheelsucker will not die.

I have a plan.

Once I begin chemotherapy, I will post short entries daily that will focus on my regimen, its side effects, and its affect on my daily experience of life. I imagine a daily entry might include information on:
  • Which drugs I receive, when, for how long
  • How I am feeling (physically)
  • How I am doing (all the other ways)
  • What I am eating
  • The status of my bowel movements
  • Which nurses I have pissed off
  • Which patents I have befriended
  • What I am reading, listening to, or viewing

I will supplement with extended essays on various, related subjects. Examples include:
  • How you can support me (What to say and what to do when...)
  • Sex
  • An open letter to The Charlatans
  • All the stuff you needed to do before you started chemotherapy
  • All the crap you didn't think about before starting chemotherapy
  • Sex
  • Family
  • Friends
  • My Bucket List
  • Sex

And, to continue the saga as a saga, I will detail experiences I have had, continuing my telling of Odyssey II. Already, there are missed chapters, such as:
  • Heavy PETting
  • Johns Hopkins Dandies
  • Georgetown's Militaristic Hippies
  • Driving with Dad

As you can see, there's a lot of work for me to do.

It's motivating. It's centering. It's what I need.

I hope you'll come along for the ride.

What will be will be what will be.
I've got this.

Tuesday, October 22, 2013


Constant Reader, this post fits outside the normal flow of my ongoing narrative.

I recently attended a memorial service for a teacher who was special to me. Pamela Taylor was her name.

We called her Tay.

Pamela Taylor died of cancer.

Pam Taylor is dead; long live Tay.

Tay is a legend, and her legends are legion.

She was a fan.

She was a critic.

She was a teacher possessed.

She was a gift and a bane.

She was hard.

She was kind.

She was...

Everyone who went to Gunnery walked the school walk. It's an experience we all share. If you went to Gunnery during Tay's era, we share something more.

We share Tay.


Tay had a soft spot for me. I think. Maybe. It's the best explanation I have.

I never got the hairdryer treatment—she never raised her voice at me, blowing me back in my chair.

I got The Look. (Actually, I got several of The Looks.)

More often, I got something else...


Tay was our soccer team's most ardent fan. She perched on the cusp of the hill overlooking our field, a gargoyle presence, old and inevitable as time itself.

When we sucked (and gods, did we suck—at first), she was there, shrouded in her smoke, peering at us through darkened lenses. She cheered, passionately. And she jeered, intensely. God help the referee who dared whistle foul. But no gods could help the Highlander who failed to fight. We knew what she expected.

When we got better, so did she. More cheering and less jeering, but when we let her down... She was efficient. She was effective. And she was right.

We got good. We got very good.

Tay was with us; the gargoyle transformed.

She still perched. Someday I should bury a stone to mark Tay's Place. But she was seldom alone. She brought others, or others joined her, though I more think it was her gravity that drew them.

And she cheered.

And in the rasp of Tay—as it boomed across the muddy fields upon which we plyed and played—you could hear her pride. And as the weather deteriorated and our standings improved, Tay was...Tay. She lorded over our bog, like some Flanderian queen under her burgundy and white umbrella. Inevitable, and terrible, and wonderful.

Then we won. We had no more hills to conquer.

And Tay was there, among the thong. Proud queen.

Tay, thy name is constancy.

Long live Tay.


Tay smelled.

So do you.

So do I.

But I don't remember the way you smelled; and chances are, you don't remember me well at all.

But I remember Tay.

I hated morning so much I would be one of the first to breakfast. I hated being around people before I was ready, and getting to breakfast early guaranteed that I could avoid most everyone. Except for Tay.
Honest Reader, memory tells me that Tay was always there. I know that can't be true, but this is my telling of her myth. And in my tale, she is always there. 
I'm cursed with a strong sense of smell. (My children are doomed—I'll know everything they're up to as they explore adolesence.) And I never smoked.

Tay smoked.

And I remember dark winter mornings of biting frost and crunching snow and crusted eyes, and I remember trudging into the dining hall. And I remember the brimstone that greeted me.

"Whitney," she would say.


Thus my day would begin—with Tay in my nostrils.

And I remember post caffeine-and-nicotine theme conferences, when the red pencil danced and the brimstone burned.

Thus were my lessons infused with Tay's scent.

And I remember The Hug. It was the first hug, of which there would be two.

T'was a dreary Connecticut evening. We hadn't won.

Though I had distinguished myself against a hated rival, I was gutted, heartbroken. I wanted that win. And as I stood there soaked and shivering, starting my long crawl into that safe place deep inside, she hugged me.

Tears. I buried myself, her shoulder and her hair my cover.

She pulled me out and up and in.

She said now-long-lost somethings.

And I remember the damp, the polyester-and-wool, and the brimstone. And I remember the love.

She gave, and I took.

Long live Tay. 


I was a useless student.

To call me contrarian would be close to the mark, but it would be missing something essential.

I was lost and lonely and confused and every adolescent cliche. And I was too damned smart, too effing creative, and too undisciplined; I was selfish and foolish and arrogant and stupid and I knew everything and I knew nothing.

And if you knew me then, you know it's true.

In his eulogy for Pamela Taylor, Ed Small phrased it beautifully: "She drew the best out of you without you even knowing it."

AP English, some kind of seminar thing, and I blew it off like most everything else.

Tay never said a thing.

Tay was the facilitator, assigning readings, stimulating discussions, readying us. Well, not really "us," since I never went.

Originally, the seminar was a golden opportunity to spend time in the close company of certain attractive young ladies (with whom I entirely failed to get along). But I quickly decided that it was too much work—another dose of Tay was too steep a price.

You see, I already had Tay as a classroom teacher. We connected there—having one-to-ones about this or that that seemed to exclude everyone else. She constantly gave me rope; I never hanged myself.

So I stopped going to the seminar.

Tay never said a thing.

The weeks passed, and the year stretched on, and the examination neared, and suddenly one Saturday I found myself with a dry mouth and a blue book and a pencil. The exam asked me to consider a question and write an essay, referencing specific literary works—none of which had I read, many of which Tay had assigned.

Naked I sat, exposed.

I. Was. Fucked.

I had two choices.

Stay, and I would fail. Go...and declare myself a failure.

To be or not to be...

I closed my eyes.

I breathed.

And I started to weave.

Of its own accord, the pencil wove its way across the looming lines, over and under and back on itself. And I filled a page. And another. And I warmed to the task, writing about a book I'd read on my own—a book I'd never studied or discussed or pondered or deconstructed.

And it was done.

The weeks passed, and the year stretched on, and spring sprung and graduation neared, and I got an envelope in the mail. I opened it.

5. Out of 5.

In my Catch 22 I'd written about "Catch 22".

I rocked it.

I headed toward Gunn from the dining hall, and Tay was walking across campus. I called out to her, waving the paper in the air like some damned-fool, barefoot newspaper boy in an old Disney movie.

I handed her the paper. And she hugged me.

And this time I didn't bury my head and I didn't cry.

This time I laughed, and I remember what she said: "I knew you could. You were ready."

I saw her eyes, and (in my telling of this myth) I saw her cry.

And I remember the way that spring day smelled—all hope and growth and warmth and joy...

And no brimstone.

Long live Tay.


Tay taught me, without "teaching" me a thing.

She gifted me with two lessons.

She taught me to write without "writing." She inspired me to find my voice—to be true to me. It's taken me more than 20 years to realize her lesson.

Long live Tay.

She taught me to live.

Without a single word Tay encouraged me to be...me—even as I struggled to find me.

I understood that the unexamined life was not worth living, so I examined life to its core. But I didn't understand that life itself was worth living—for its own sake—and that every wound proves to be as valuable as every triumph.

She encouraged me to think for myself and to be myself. She showed me that life could be lived with integrity—that you can be both true and honest...and real.

It was the way she lived; it is the way she lives on. 

Long live Tay. 

Pledge observed.

Monday, October 14, 2013

The Hardest Thing I've Ever Done

I've just done the most difficult thing I've ever had to do.

How do you tell you children you have cancer?

Constant Reader, this blog has been all about me. It's focused on my experiences, thoughts, feelings, and neuroses. This post will be little different—I can't change canoes mid-stream. But it's not merely about me. It's about them.
And they are what matters.
I've asked myself time and again why I've been expending my limited time and my energies writing this blog. I know that in part, it's outreach—it enables me to bring my world closer. My relationships are a diaspora, scattered over time and distance. Writing connects me.
I also know this blog is what's holding me together. It focuses me. It forces me to organize my thoughts, my notes, my emotions, my...everything. Writing it helps me to see my path, make sense of it, and cope with it. You may or may not believe this, but it gets me out of my head. (cue laughter) When I write I'm both thinking and feeling, but not feeling so much as thinking. I'm sorting and planning, as opposed to fretting. Writing helps me manage the noise, So I can analyze the signal with cold calculation. It's cleansing.
I'm also paying it forward, servicing an audience I don't know and may never meet. I've written before that if this helps someone somewhere in some time of need, then it is good. It has value. It is something more than the sum of its bytes.
All of this is true, and all of it is a lie.
You see, something hit me today. It was a moment of absolute clarity that smacked me across the face with a cold brick. It mortified me. It was one of those times when you realize how mind-numbingly stupid you have been.
The truest truth is this...
I'm not writing this blog for me.

I'm not writing it for you.

I'm writing it for them.

It's for my daughters.
And in that moment, it all made sense.
I'm writing all of this to give their future selves insight into their father. It's a queer gift, I know. But some day they will be adults. Some day they'll be ready. And when they are, my past self will be there for them—warts and all. And they will get a truer sense of me than any story I—or you—could tell.
Knowing this matters, and I'm comforted by my sense of purpose.
But knowing this still doesn't answer my question: how do you tell you children you have cancer?

I've had to lie. I've had to act. I've had to avoid questions and sidestep answers. I've had to be up when I was down, and be on when I was (most certainly) off. These 50-odd days have tested me in uncounted and untold ways, but no challenges have been more difficult than those challenging my Daddyhood.


I need to go back many years—before BCB and I married. By happy accident we were living in Annapolis in a tumbling-down farmhouse on a magnificent spread of land. The epic porch overlooked the Severn River and the Naval Academy. Sunsets delighted us, just over the left-hand treeline, and twinkling lights glided across our central view, as myriad boats plyed the river after dusk. It was poetic and romantic in a way that never happens in real life—yet it was our life...and how I do remember it...

One afternoon, evening, night BCB and I had The Talk. You know the one: "what are you (am I) going to do with your (my) life?" I had reached a critical fork in my road. Two clear paths stretched before me. Down one, I would become a professional chef—following my passion for cooking to its logical conclusion. Down another, I would become a lawyer—following the money, tapping my intellect and competitive nature to enrich us. Two logical choices—perfectly grokable by anyone who knew me.

Yet, as we talked, a third path quietly asserted itself. In many ways, it was the path of least resistance, because it required me to do little at the time. On the surface it seemed to be the least attractive option—it seemed to lack passion, and it absolutely would not lead to riches. Yet, it compelled.

The third path was Daddyhood.

I don't know when it happened, exactly. In truth, it may never have "happened", so much as it always was there (and simply needed to be recognized). The fact was this: I wanted to be a daddy. Not a father—a daddy. It's just a word, but it conjures so many images.

Close your eyes and think: "daddy". What do you see?

Now, close your eyes and think: "father".

They're not the same, are they?

Chefs work nights, weekends, and holidays. That's not conducive to being a daddy.

Lawyers—especially lawyers of the ilk I would have become—work obsessively. They feed on ego and fierce competitive nature. I've got those things within me, and I know what happens when I tap those veins. Daddyhood would never have fit that lifestyle; I knew that scenario would lead to regret.

And as the conversation meandered, Daddyhood beckoned. Family life called. I wanted a family. But more importantly, I wanted to be Daddy.

So I stayed my course. I made incremental changes to increase my salary. I shifted my career path, nudging away from this and closer to that—always keeping something of me in reserve...so I could be the best daddy I could be.
Constant Reader, we all make our own myths. I know that this is mine. While it was absolutely as simple as that, it also was far more complicated. So many chapters are being left untold that this story may seem one-dimensional. Yet—and no, the man doth not protest to much—the kernel of truth is here.
Daddyhood drove many decisions. They weren't always the right decisions, but they were grounded in something essential—my identity as Daddy. Separate that from me, and I would be ruined (which is why some aspects of my divorce were so crushing...but that is a story for another time.)
Time passed. Eminent fatherhood terrified me, even as it thrilled me. Seeing Julia—within minutes of her birth—respond to my quiet singing took my breath away (and in writing this, the memory still does). Sleep deprivation and the demands of parenthood challenged me and brought out the worst in me. Demon Insecurity fought with my conviction. I struggled with and against that which I so desired, and at times I lost sight of...everything—my dreams, desires, goals, aspirations, and myself.

Yet the bond I felt with my daughter proved stronger than any demons inside me. She remains my saving angel.

More time, another daughter, and another instant bond. Erin...was different. She seemed so...me,. Tiny, jet-haired, and pink-skinned her spirit burned with a fire from deep within.

On the day Julia was born, she was a warm, yellow light.

On the day Erin was born, she was incandescent.

Nothing has changed.

Yet for all their differences, they're both my little angels. They both love to stroke my arm hair, running their fingers through the strands just as when they were infants.

Even at the ages of eleven and seven, they both love lullaby time.

They both still ask me to read to them. Julia nuzzles her head into my shoulder. Erin perches, reading along. Julia a-cuddle; Erin aware. Both living in the moment with the simple ease of their youth.

These anecdotes are legion. The stories abound. The memories alight.

They are precious to me.

And I need to tell them Daddy has cancer.

I'm not one for staring in the mirror. I don't talk to my reflection. My dialog is internal; it's always with me.

For the past six weeks I've pondered and wondered and fretted and panicked and sweated and ignored and mused and asked and reflected and every-damned-verb-you-can-thinked about how I was going to tell them. And how I could do so, and still be Daddy.


Divorce sucks. Divorce is brutal.

I've never been so happy for my divorce.

When it happened, telling the girls that BCB and I were separating was the hardest thing I'd ever done.

I'd broken people's hearts, lied to everyone who ever mattered to me, seen death, and committed countless other unpleasantnesses. I'd done things I've regretted, and I'd done things that cracked my soul.

But nothing I'd ever done prepared me to tell my little angels that I had to move out.

The end of my marriage broke my heart. Separation was breaking theirs. Daddy knew which was worse, and it was the stuff of nightmares.

Yet, when it came to it, I was prepared. I knew what I would say.

BCB and I told them; they were devastated. We had some final moments as a family, and then the angels and I held one another, quietly.

I told them that we were about to go on a journey together—like so many of our hikes through the woods. And on our journey we would have to cross a log. Sometimes the log would be wide and easy and we could all cross together with no fear. Other times the log would be narrow, or slick, and still other times it would get long. We would stumble—each of us. And there would be times when each of us would be strong and would lead, sometimes Daddy, and at other times Erin, and Julia would, too. Each of us would help all of us...

And together we would get across that log. Together—holding hands, encouraging...loving one another—we would continue our journey.

And I said that we might never get there—wherever "there" might be. But that as long as we loved one another, we would always be able to bridge the gaps.

And I gave them a message that came from deep within—something they could remember and hold and own and cherish:
I love you forever.
I love you for always.
No matter what happens, for good or for bad,
Wherever you are, wherever I am,
As long as I live,
My sweet baby you'll always be.
I've repeated it hundreds of times since.

We've revisited the log countless times.

We're still together.


How much of the wisdom we share with our children is really for them?

We're dishonest when we fail to acknowledge those times when we are also talking to ourselves.

The separation conversation was hard, but my convictions were strong. I knew the message I wanted to send, and I knew the girls knew Daddy loved them.

As the divorce ensued, Daddyhood was threatened, and I had to fight for my girls. As the battles raged, I had to maintain two fronts. I had to be Daddy—strong and wise and loving and supportive and kind. And I had to be hard—as BCB and I engaged in a conflict far beyond my understanding and my experience.

The only thing that enabled me to soldier forth was my Daddyhood.

I did what I had to do to ensure my future with them.

I did things that make me sick. I went places where no one should ever go. I pushed myself beyond my limits, and I started to learn that I have no limits.

I stood strong on two fronts, even when emotional vertigo erased the ground beneath me.

And something strange happened along the way. Divorce didn't destroy Daddy. Divorce made Daddy a better Daddy.

Divorce brought me full-circle to the evening on the porch. It took me back to my root and my core. It stripped away layers of bullshit, like so much bark. All my detritus, my stupid shit angst, my bitterness, my regret, my depression, my anger, all were peeled away. And what was left was what mattered: my little angels.

And that's why I'm happy for the divorce.

Once brittle, I've become folded steel. Divorce's forge first seared me with betrayal and heartbreak. It melted me inside. But I tempered myself. I knew what mattered—my relationship with my girls was all that mattered.

Clarity gives cold comfort, but sometimes that is precisely what is needed. It toughened me. With each battering another layer folded over. Heat and cold worked their magic, making me a stronger, humbler, wiser, more focused, better person.

Divorce was preparing me for something...

Who knew?

What Do You Say?

I solicited advice.

I spoke with the former BCB. I spoke with a professional counsellor. I read material from a variety of sources, I listened to friends and family. But ultimately, I listened to myself.

I knew I needed to be direct.

I needed to be truthful, without being dramatic.

I needed to give detail, but not overwhelm.

I needed to be honest.

I needed to be Daddy.

I reminded myself that "truthful" and "honest" are not the same thing. Being "truthful" means you accurately communicate the facts. Being "honest" means you accurately communicate you—your emotions and thoughts and spirit.

Honesty is when your eyes smile along with your face. Honesty is letting yourself cry. Honesty is telling your angels that you're scared, and that it's all right for them to be scared, too.

Honesty is infinitely harder than the truth; honesty comes at a great cost. Truth is what it is, but honesty makes you vulnerable. How many of us are willing to pay that price?

The former BCB and I had talked on several occasions about how we wanted to handle The Conversation II. It needed to be on a weekend when the angels would be with me, so that they could process it with me, react with me, and ask anything they wanted to ask. We also preferred that it be outside—that it not be in either of our homes. We believed that open air freedom would serve our free-spirited girls far better than the confines of a house.

The weeks passed as my odyssey continued. I travelled and met with him and her and that other guy; I visited this and that hospital medical facility lab center; I was poked and prodded and irradiated and purged; I was...exhausted.

And every time I thought I knew something, something else would happen, and I would become unsure. As I rode the spiral toward understanding, it swerved and bobbled, and I grew dizzy with confusion.

Until now.

I know what I know, and I know what I don't know, and that known unknown is manageable. Which means that I could have The Conversation II.

Until then, there was no sense in telling the angels. Why confuse them? It would be hard enough. Know it, and tell it. Be honest, and be strong.

I've got this.

Say It

We met at the reservoir, first tromping through the mud before romping at the playground at the top of the hill. The former BCB brought Zeus—the girls' dog—and we played ball, getting our ya-yas out for a short time. Then, with the sudden directness of her years, Julia said to me: "You did this on purpose, why are we here?" And with that, I told them.

There's no easy way to tell you this, so here it is. Daddy has cancer. It's come back.

Erin immediately melted in tears, burying her head into my lap.

It's OK, honey. Let it out. I have a lot more to say, but it can wait.

She shook as she cried. And she gathered herself—with startling composure—and nodded.

You know that I was sick and in the hospital for Labor Day, and that I've been in New York to see my doctors. You know I haven't been myself. It's because...imagine a hard-boiled egg. I have a hard-boiled egg inside my hip. It's the reason why you haven't been able to hug me there, and why I haven't been riding my bike, or racing cyclocross this season. It hurts.

Julia sat, open eyed and stunned. Erin bawled.

I know, sweetheart. I know.

I stroked her hair and waited for her calm. All the while, Julia and I made eye contact. She's a deep one. Erin let me know she was OK.

There's a lot more to tell you. Let me know when you're ready.

They both nodded.

My doctors are the best in the world. They're going to help me to get better, but it won't be easy. I need to take strong medicines to kill the cancer, and those medicines will make me sick. It's called chemotherapy. First I'll get fat, and then I'll probably get skinny, and I'll lose my hair and other things may happen.

"Will you have to have surgery?" Erin asked.

Yes. I will. After the chemotherapy I'll have surgery to get the nasties out of me.

She buried her head once more. "No!" She cried.

It's what we need to do to get me better again.

And so it went. I told them about the schedule. I explained that I would not be able to see them during the first week, since I would be getting stuff in my arms, just like in the movies. And that I would not be able to see them much during the second week, as I would be sick as a dog.

"Dogs aren't sick," Erin asserted, touchily.

"They are when they're throwing up," I responded, and immediately regretted it.

I cringed. Don't fuck this up, I thought...

I then had to explain to them that I might not be able to see them much during the third week.

You know how you sometime feel—before you get sick—when you're run down and you have a sniffle and a sore throat, but you're not so sick you can't go to school, but you know that you might get really sick soon, if you don't take care of yourself? Well, I'll be a lot like that. And I may not be able to see you—even if we all wear masks...though that would be cool to play doctor with one another with masks and stuff...

Throughout, the former BCB lived in the moment with the girls. She helped console Erin, she interjected here and there—helping clarify, or soothe, or support. She was nothing short of wonderful. Even considering all that has happened in recent years, there were moments wen I recognized the woman with whom I fell in love, and I was reminded that I will always love her. That's my burden. The marriage is gone, but the children remain as a bond to forever unite us. I remain grateful for having met her. I'm deeply appreciative of her as a mother, and I know how much the girls are going to rely on her in the coming months. Hers will be a difficult path as well. I see that.

I talked a little more, but not much. And then it happened: the one question I feared.

"Daddy are you going to die?"


In the bleakest moments of my life, I considered it. "Suicidal ideation" is the term. Never trying it, sometimes thinking it, I visited the darkest places any of us can know.

It became a pattern. I knew that place. I'd decorated it and arranged the furniture. I knew every nook and fissure. I could evoke the smell and taste, even as I listened to its sound. It was...comfortable.

I know, it's twisted and sick and deranged and horrible. It's every judgmental phrase you've ever thought and uttered, multiplied by self-righteousness.

But it's true. In my darkest moments, I believed that I was worth more dead to BCB and the Angels than I was worth alive. I was miserable. She was miserable. And the Angels were suffering.

At least the insurance money would be worth something. I thought. My being here doesn't seem to matter.

I fought that demon, wrestling. Sometimes in control, other times I was pressed against the mat, suffering, sinews stretched, sweat pouring, blood in my mouth...

And every time it thought it was winning, I found something.

And that something most often was a little angel. A vision of those eyes, light laughter, golden hair, their scents, their sensibility, their future unrealized, their hearts untrammeled—they would give me strength. And I would be free.

And so it went, around and around...and then...

Divorce changed all of that. It killed that demon.

Divorce brought me full-circle. It reminded me of me.
This above all: to thine ownself be true,
And it must follow, as the night the day,
Thou canst not then be false to any man.
It's ironic that just when I learned to love myself and love life, cancer returned. Now I have to fight for that life...and that love.


"Daddy, are you going to die?"

It's not in my plans, honey. It's my intention to be here for a long time. I plan to be around to make your adolescences miserable. I plan to stand in the doorway with a shotgun and scare your boyfriends!

And I babbled some more, saying what felt right and sounded right, and seemed right and was right. And she was having none of it. "Daddy, can it kill you?"

I've never stared down the barrel of a gun. I hope I never have to.

I swallowed—painfully conscious of the silence.

Yes. Yes it can.

I told the truth. I was honest.

I was vulnerable, yet I was strong.

When you combine truth with honesty, you become a powerful being.

Daddy is powerful. I was powerful.

We got through it.

Some tears, some hugs, and with the unfathomable resilience of youth they were on the monkey bars and slide and swings and acting like damned fools getting all dirty and silly and giggly and chasing the dog and romping back down the hill.

And everything changed. And nothing changed.

The log got a little shorter and a little wider; the footing got more certain; and we are together.


I need to be strong on two fronts, once again: I'm Daddy, and I'm going to beat this cancer.

When the emotional vertigo hits, I'll fight back. With purpose.

What will be will be what will be.
We've got this.



After we got home I gave each girl a journal. Erin's is decorated with a dragonfly—a symbol we've long associated with her spirit. Julia's is just plain pretty. It's pink and decorated, yet classic and tasteful—just like her.

I inscribed their journals, and I told them that they were special gifts.

I suggested that they use them to ask questions and shout and scream and tell stories and save all the things they want to say and do, but that they're afraid to say or do. I told them that they were safe spaces—places where only they could go, unless they invited someone else to join them. Most of all, I expressed that the journals were a place to get it out—whatever it is—and that they need to get it out—whatever it is—and that I would support them completely.

Over the weekend I had moments with each girl—private moments between this and that when we shared.

I refined my mantra to them. I like this version more:
I love you forever.
I love you for always.
No matter what happens, for good or for bad,
Wherever you are, wherever I am,
As long as I live...and forever more...
Your Daddy I'll always be.


I was doing dishes or getting dinner ready or somesuch kitchenery nonsense when Julia came upon me from behind and hugged me.

It was one of those hugs that you remember.

When she released, I turned around and looked at her. I saw her hurt and her beauty and her love and her fear and her tears all in the same moment.

I held her shoulders and squeezed.

Julia, I'm going to use some dirty words. Deal with it. I paused I'm a tough bastard and I can be a colossal pain in the ass, which is exactly what you need to be to beat this. I'm going to fight like a motherfucker. I'm going to be here for you. And I'm going to be the biggest pain in your ass as you get older.

And I hugged her and we cried. I'd never spoken to her using that language. Somehow it was right. It was honest...

I'm scared, honey, I won't lie. It's really fucking scary. But we'll get through this.

And I teared up. And we cried as we held one another.

I love you.


We were settling down to watch a movie. Erin turns to me and declares: "You don't seem to have cancer."

I looked at her blankly, reacting to the words as well as the out-of-the-blueness of it.

What do you mean, honey?

"If you had cancer...I don't know how to explain it...well...you'd be...different...you'd be..."  




 "No, you didn't start chemo."

Gobsmacked once again by the precocious one...  


"Yeah, weak. You'd be lazy."  


"You'd be sitting around all day watching TV, and your voice would be weird.  

Why weird?

 "Because you'd be weak. Let's start the movie!"


Sitting on the couch after playing a game, Erin turned to me. "Why did you get cancer?"

I don't know. If I did, I wouldn't have gotten it.

 "How could you have stopped it?"

 I don't know, honey.

"Then why did you say that?"

 And I could have smacked myself for my stupidity.

Because I didn't know what else to say. Erin, you're right. I'm sorry. I don't know why I got cancer.


OK, indeed.  

What will be will be what will be.
We've got this.

Thursday, October 10, 2013

Come to Jeezus

Honest, constant, dear reader, this has been a trying week.

I'm exhausted. I'm emotionally and mentally tired. I've not posted in a while, a clear sign.

Physically, I'm uncomfortable. I have pain, I get tired. It's manageable.

Emotionally, I'm holding it together. There's no sadness or anger. There's a lot of concern and anxiety. Fear is a big part of my life—and I'm not comfortable with that. And I'm lonely.

Mentally, I'm a mess. There are a thousand things needing my attention, and they require concentration. But I'm lacking focus. I'm not sleeping well, which contributes mightily.

I'm out of synch. I need to find my rhythm. It's one of the hurdles I need to leap...and I will. I started writing this at 0400 Wednesday morning. I have two more posts in the hopper. After a week of silence, I'm about to send out a lot. Fair warning... 

Today is Hopkins Day. Look at your calendar, isn't your calendar marked "Hopkins Day"? No?

A week ago I was at Memorial Sloan-Kettering...again. A week ago I had my "come to jeezus" meeting with my New York team. It was the beginning of my slide...

Not that it went badly—it went as well as reasonably could be expected. It brought everything closer,  less abstract. It made it real.

Old Friends

It started with the clickityclack of the train, rolling northward to New York.

By now, it's become routine. I park in the same space at the railroad station garage, wait on the same spot on the platform, sit in the same seat (quiet car, 'natch), plug in my devices and write/read/doze until the seat next to me gets occupied (usually Philadelphia), and read for the remainder of the journey into Manhattan.

This trip I met a friend from high school. As prep school lads, we have a bond that effortlessly bridges the years.

Sitting in an East Side diner, I was comfortable and comforted. This was all according to plan.

When he emailed me to tell me he hoped to see me on one of my trips to The City, he had no idea how good his timing was. I knew this would be a rough trip, and that I needed support.

Yes, I knew that I didn't want anyone to join me with my doctors—it's too much for me. Other people's energy—that's the problem. It may sound woo-woo, but it's the only way I can describe it. Other people are...people. They bring their spirit and energy to everything they do. For the most part, we don't notice—it's only when people are notably positive or negative that our spidey-senses tingle, and we're reminded that just by being around you, others can influence your mood.

On this day, I didn't have any patience for that—right now. Going into this meeting, I needed clarity. I needed space. I needed to not be burdened by anyone else's impatience, anxiety, concern, solicitousness, or needs. I had to be perfectly selfish; I needed to exclude everyone. In order to get through this, I needed peace.

Which is why breakfast with an old friend was perfect. I was able to feed my needs. I could laugh, swap stories, listen, care, and not think. I could just be.

And for those two hours, I did. And I was.

And it was good.

Walk the Walk

MSK is no great distance from the diner, but it's a world away.

New York is magnificent. It's one of those places where you can hide in plain sight. So many people, so little space, so much energy, so much to see, smell, hear, feel, taste...

In the time it took to walk ten blocks, I was transported from a kind of peace to...something different.

I aged—a lot. Waves crashed. Anxiety rooted. Fears rushed in. By the time I got to the playground I had become jelly.

Unsettled, deeply. I called another friend.

This friend's energy is enough to light up a small, Midwestern city. He's a character—someone easily chalked-off as an insincere mercurial flake—but if you look into the pool, not at its surface, you find him deep, passionate, and loving. He's a dear friend I trust completely.

As I dial, I know that if I can just talk to him, all will be well.

He answered.

"Tell me something good," I said.

He did.

Major uplift mojo.

The details don't matter. What matters is that he was there when I needed him.

Come to Jeezus

There is something religious about these meetings. Like meditation, you need to clear your mind of all extraneous thought.

To be effective, you set aside fear. You live in the moment.

You block the noise and listen for the signal. You trust your intuition.

You have faith. You doubt.

You're tested, and you emerge affected.

You're no longer the same. Something shifts.

Me? I was useless. I couldn't focus. The playground didn't help. The phone call did, a little. But I was a mess.

I strode into the building, wheeling my overnight bag as I have so many times previous. But my stride lacked the confidence and focus of other journeys. Something was wrong. Doubt was strong within me, and I couldn't control it.

I rode the elevator with Doubt, feeling the closeness of the ceiling and the confinement of the walls. Panting, I struggled for calming breaths. Sweat trickled down my armpits. My feet and hands went cold. This is how panic starts...

Then the door opened, and I crossed the threshold into a familiar place. And...everything changed—again.

I felt sunlight warmth pouring through the windowed wall. I delighted in the space. I closed my eyes—for just a moment—and breathed. I reset myself. What will be will be what will be. I've got this. I checked in.

By the time the nurse took my vitals, I had calmed completely. My heart rate and blood pressure were normal.

I was back. I pulled out my papers and reviewed my notes.

Let's roll.

Answers and Questions

Beau (as The Nurse), Dr. Tully (as The Resident), and Dr. Bajorin (as The Dude) flowed the information, and I was awash in detail. Some was review, some was annotation, yet more was new. It was a lot to absorb.
And that, Kind Reader, is the best explanation for the delay in this post. It was intense, demanding, and—while not overwhelming—challenging. It took me a week to process it. No mere train ride was going to help me after this one.
Biopsy 2 had gone well. As it happened, the bowel prep was sufficient for Dr. Erinjeri to get a straight shot and a clean sample. No ballooning of the bowel was necessary. So, crapping my soul proved valuable. Lesson learned.

Unfortunately, the test results were inconclusive. They were non-diagnostic. The results were no different from Biopsy 1.

Incontrovertible evidence was the goal. We fell short.

This brought us back to square "I-don't-know-what-number"...not Square One...maybe Square 8...we did not pass Go...someone else collected $200...we were back where we were.

We were in the place before Biopsy 2, where we had mapped out several possible outcomes:
  1. It doesn't work. There may be lesions that prevent the tissues from separating, blocking the needle from a clear path to the tumor.
  2. We get no better data. We may get samples, but the tests may have the same or similar results as the first biopsy.
  3. We get more data. This is the plan/hope/desire. We want viable cell samples to administer the tests. 

In the wake of the inconclusion, the team considered other biopsy options, and rejected them. The fact was that Dr. Erinjeri had gotten a clean, solid sample—textbook stuff—so it made little sense to start drilling my hip.

They also reconsidered surgery. They looked carefully through my scans, and returned to the conclusion that surgery is too risky. The size and placement makes it a challenge, and there is a significant risk of seeding my abdomen with cancer cells. That would not be good. Like, "tell him about the Twinkie" not good.

With the results squarely in option #2's camp ("Who does #2 work for?"), we were relying on clinical judgement to make the call.

Walks Like a Duck...

Dr. Tully stated it best: "It walks like a duck and quacks like a duck, but it's wearing the wrong dress."

Placement, timing, my cancer history, presentation all indicate a germ cell tumor.

Teratoma remains a slim possibility (that damned dress!), but the broad, deep, seasoned MSK team believes it to be germ cell. And if germ cell, then TIP.

No surprises. I breathed. Not happy. Not sad.

I sucked the air in and held it, forcing time to stand still. Eyes closed, I focused on nothing. I watched the eyelid kaleidoscope shift, the colors fading to grey.

No surprises. A body blow, but no surprises.

Dr. Bajorin then calmly said exactly the right thing at the right time: "I have no reservations about this decision." Thirty years of clinical and research experience spoke to me, and I listened.

No reservations.

Devilish Details

The recommendation is thus:
  • TIP chemotherapy
  • One month (or so) for recovery
  • Abdominal surgery to remove whatever remains
Three bullets. So simple.


It was my turn: question time. I worked through my list.

Can I/Should I get a flu shot?
Yes. Absolutely. Get it now.
OK, sounds reasonable, and they are giving them at the office tomorrow. Cool. 

One of the cisplatin side effects is hearing loss (that may become permanent). Do you recommend an audiology baseline?

It's true that cisplatin is ototoxic (can cause damage to the ear, specifically the cochlea or auditory nerve and sometimes the vestibular system...), but we don't recommend a baseline test. We recommend it if TIP is your second line chemo, having already had BEP. Even then, it's only a reference data point. The cisplatin dose will not change, regardless. The only way to mitigate it is to reduce the percentage of cisplatin, and that will not happen.
So, to my friend the audiologist I write...we'll see. I may push for this. For me, a lot depends on timing and logistics. I'd love to see you, sit in your booth, and listen for the beeps. Hell, I'd love to flirt with you! But I'm not sure it's gonna happen.

Are there any changes to the protocol, compared to the clinical trial documentation I have?
No changes. It's exactly the same.
Cool. That makes it easy to set expectations.

Will I get a port?
Maybe. It depends on the facility. There's a 3% risk of infection with ports. If you got treatment [at MSK] we wouldn't use a port. You have great veins.
I don't like this answer. The IV they put in for Biopsy 2 still feels weird. It was in the vein along the forearm bone just by the wrist. I hate that placement almost as much as I hate the back of the hand placement. This will be plenty uncomfortable as it is... 

I already went to my dentist. I got a cleaning and a filling. He warned me about possible side oral effects, and I had read about them in the literature. What should I expect?
Chemotherapy kills rapidly-producing cells, like saliva. For many patients this results in dry mouth and sores. You can manage it with an oral rinse made from one tablespoon baking soda to one pint water. Or, you can use a non-alcohol-based rinse, like Biotene.
Again, what I expected. A colleague of mine-who continues breast cancer treatment—kindly gave me a bottle. T'was a lovely gesture of support.

I understand that there is a risk of long-term cardiovascular side effects. Can you tell me about those? As an endurance athlete, I'm concerned.
There's a very small risk increased cholesterol and increased blood pressure in certain patients, who were already prone to those disorders. In your case, the chances seem remote. Your cholesterol is perfect, and you are typically on the low end of normal for blood pressure.
Cue: sigh of relief.

What other additional medications I should expect to be taking during treatment?
Antiemetics. Absolutely. Everyone reacts differently to the medications, and patients tolerate the regimen differently, but antiemetics are the most common. You may get an acid blocker, also to help with the stomach.
What about Claritin? I understand that people take it to help with the pain.
You're good. Where do you get your information? It's true that many patients take Claritin prophylactically for bone pain. There's anecdotal evidence that it helps with the pain associated with Nulasta. When the bone marrow is stimulated (to create blood cells), the increased marrow activity causes pain. There is no clinical testing to prove that it works, but people take it with no harm done.
No surprises. Prophylactically...I love that word. Gotta protect my bones from getting pregnant!

Anything other meds?
You're probably going to need Colace and/or Senokot. You're likely to get constipated, but it's difficult to predict at this time. You'll know during the second cycle how your body will react.
Ah, joy of joys! I'll have more opportunities to wax rhapsodic about me bowels! Brilliant!

OK, let's talk about side effects and age...


All three of TIP drugs—paclitaxel, ifosfamide, and cisplatin—are known individually for having neuropathy as a side effect. Mix them together...

Peripheral neuropathy—the type I am likely to experience—is a disorder of the peripheral nerves—the motor, sensory and autonomic nerves that connect the spinal cord to muscles, skin and internal organs. It usually affects the hands and feet, causing weakness, numbness, tingling and pain.

Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and burning pain.

Fun stuff.

Neuropathy affects the distant nerves—those that reach your extremities. It may be temporary. It may be permanent. You never know until you know.

My Biotene-generous colleague has permanent numbness in her feet. It's not fun for her.

This scares me.
Constant Reader, are you as tired of reading "scares" and "scared" as I am of writing them? Crikey. Maybe I need to dig deeper into the thesaurus. Perhaps "tremulous", "quivering", or "shit-stained" would be better?
As it is, my feet get numb. They're numb now, as I sit typing. My hands and my feet get cold on the warmest days, and they're often numb. It can be annoying, but I deal with it. It's normal; it's my normal.

Listening to The Dude talk about neuropathy hit home. I ride bicycles. I love to ride bicycles; it's a passion. Riding with permanently numb feet, weakened muscles...
Can we please change the subject. Hey! It's raining! Cool! Mud for the weekend's cyclocross racing! 
Neuropathy is duly noted.


What will be will be what will be.
I've got this.

You're Old

Facebook friends are greeted on their birthdays with the following: "You're old."

I usually write something pleasant after that, often with a bit of humor. Heavens forbid that I write "Happy Birthday" (it's so pedestrian!).

Sitting with The Dude, I felt old.

I'm well outside the population curve for my disease. I'm older by a decade or more than most patients. It's something that has been made clear to me on countless occasions during my cancer odysseys.

It's also been emphasized that TIP is aggressive, and that there is a select population of older gentlemen who have been through the regimen. ( That was a genteel way of writing: "very few old bastards have been through this meat grinder".)

So, I asked about it.

I know that my age is a factor. Based on your experience, what additional risks am I facing because of my age?

The answer was long and detailed.

The Good
Let's start with the good. You're in excellent physical condition. Recent weeks notwithstanding, you may be 45, but your condition is that of a man in his early 30s. That's a huge positive. We have no doubts whatsoever about your ability to tolerate the treatment. You'll get through it fine.

Also, you have virgin bone marrow (Stop snickering in the back there, you!). Since you have not had chemotherapy before, your system is fresh and healthy. This should help you to recover more quickly.

The Bad
There's no sugarcoating this. It will be difficult for you. And your age will make it rougher.

Most men who get this are 35 or younger, but remember, you're in excellent health and condition.

We have given this to men in their mid-50s. It was rough on them. But in each case, they had been through BEP previously. Unlike you, they had been through chemo. So, again, you have an advantage. But it won't be easy.

So, what about age specific side-effects?

The biggest is myelosuppression.
Constant reader, an interjection. Myelosuppression is condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and platelets.
Because the bone marrow is the manufacturing center of blood cells, the suppression of bone marrow activity causes a deficiency of blood cells. This condition can rapidly lead to life-threatening infection, as the body cannot produce leukocytes in response to invading bacteria and viruses, as well as leading to anemia due to a lack of red blood cells and spontaneous severe bleeding due to deficiency of platelets.
You will have a high risk of infection. Your low white blood cell count will make you susceptible to everything. And we don't know how you'll respond to pegfilgrastim (Neulasta). You're going to need to be vigilant about staying clear of potential infection.

If you were being treated here [at MSK], I would tell you to expect to be admitted at least once every cycle for some sort of complication.
Hospitalized. A fever can kill you. We don't want that.

Gentle Reader, let's take a step back.
  • A fever can kill you.
  • Expect to be admitted at least once every cycle for some sort of complication
Now, look at the calendar. Let's assume I start chemo during the last week of October. That means that I'm going to be immunosuppressed through the holidays...through cold and flu season.

That's another sobering message—and one that's hard to absorb.

Consider: my little angels are 11 and 7. They're in school, that magnificent incubator of all toxicities. 

In my best case scenario, I could see the girls during week three of each cycle. But my best case—when I am feeling well-enough to be around them—needs to overlap with their not having the sneezes, sniffles, coughs, or colds. And even then, they are carriers of heavens-only-know how many bugs, germs, and viruses.

So, in the second holiday season after separating from their mother, I may not be able to see my angels at all. 


Honest Reader, you now have some idea why I have been emotionally exhausted.

Neuropathy was sobering, as it may have serious lifelong impact. Myelosuppression, though, is harder.

Imagine not seeing your children for three months, when they live just there.

Skype is a wonder, but it's no substitute for bone-crushing Erin hugs and tender, Julia arm-hair caresses.


It's one thing to know of a thing, but quite another to stand nose-to-nose with it. No sir, I don't like it. 

With my stomach in something of a knot, I went to that place that all patients go: numbers. What are my numbers? What are my chances? Where do I stand? So, I asked.


I don't have one.

It's sobering.

Hell, at this point I'm so sober that an entire bottle of my beloved Sam Houston whiskey wouldn't affect me at all.

Our conversation danced. We "talked around it". I pushed. He deflected. I pushed harder. He deflected more subtly. I snuck up from a different angle. I almost got him, but not quite.

I asked the hardest question I've ever asked anyone: "Am I here in five years?"

He paused, considering. "You have a good chance of being here in five years. That's why we're going through all of this."

Gentle reader, you're asking yourself, "Why no prognosis? What game are they playing?" Its no game. I understand it. I dislike it and it's scary, but I understand it.

They won't give me a prognosis because they don't have incontrovertible evidence of what it is. They can't give me a prognosis because they don't know.

I will get a prognosis...some day. After the chemo, when they can see the difference between the pre-chemo and post-chemo tumor; after they perform the resection surgery to remove the bastard; after the labs analyze the mass(es) they remove; then, and only then, will they know enough to give me a prognosis.

I know. It's not the way we expect it to be. It's not the way we want it to be. It is.  

What will be will be what will be.
I've got this.


Finally, we talked about the gorilla in the room.

OK, you win. We talked about the other gorilla in the room. There are so many to choose from...

Gently, they made it clear that they would prefer to treat me at MSK. In fact, I would prefer that they treat me at MSK. But that reality seems remote.

The Dude gave me three names at three facilities in the Washington, DC area.
  • Georgetown was his first choice. He works with the recommended oncologist on a regular basis, and she is very experienced with germ cell cancers.
  • Johns Hopkins was his second choice. He thought that Baltimore would be out of the way for me, but he put this one on the list because he has known the recommended oncologist for thirty years.
  • George Washington was the third choice. The recommended oncologist does not have long experience, but she is very good, and The Dude co-teaches a course with her.

We talked a little around the recommendations. The Dude stated that his team would do everything possible to help me navigate the entrance loops to whatever facility I choose. I would handle it from the patient end, and they would directly contact the physicians on the back end. Somewhere in the byzantine, bureaucratic medical center maze, we would meet.

We shook hands, expressed pleasantries, and I was left to myself.

Alone in the examining room I sat, staring at nothing, thinking little, feeling less. It had happened. Chapter closed. And another chapter would begin as soon as I opened my eyes and got on with my tasks.

So I indulged. I sat, quietly. I delighted in nothingness. I watched the flickering pink in my mind's eye.

And at that moment...that right moment...I sucked in a deep breath, expanding my chest to bursting. I let it out...slowly. I stood, and I said:

What will be will be what will be.
I've got this.

Tuesday, October 1, 2013


Millstone photo from http://richmondrockscapes.com/?page_id=59&pid=4
On the road again...New York awaits.

That, of course, is a lie. New York waits for no one.

Four hours' sleep has me relaxed and dreamlike. Everything is at a slight remove. When I close my eyes I drift into Nod, but do not sleep. Fugue state.

It has been a hard week, since my last journey north for biopsy #2. The gut-punch impact of the procedure was manageable, but the pensive wait wore on me, grinding...grinding.

The usual themes dominated—fear, loneliness—yet they were eased by "getting shit done". Busy-ness breeds...I don't know...something...something that isn't moping or obsessing.

Who am I trying to kid? I kept busy out of sheer inertia. As long as I was moving forward, I wasn't dead. That was good enough for me.

When Did It Become October?

This all started the weekend before Labor Day.

Remember then? End-of-summer rituals, back-to-school, we all reveled in the final long days of summer. T'was a lifetime ago.

Process fuels the engine, powering time's millstone. One. Step. At. A. Time. One procedure after another. Another test. Another needle. Another appointment. Another phone call. Another fear...

I'm tired, and the nasties haven't even begun.

How's It Going?

My second biopsy was blissfully uneventful.

After a difficult, post-bowel-prep morning, I was in a dour mood, upon arriving at Sloan-Kettering. But once beyond the sacred doors that separate the waiting room from the sanctity of the working hospital, I was OK.

Sedation and I are becoming friends. This time, while in my happy place, I remember waking thrice during the procedure. Each time I raised my head and asked "how's it going?" with wild enthusiasm.

The third time, my good doctor said: "Dude, leave me alone. I'm working here!"

Now, it's possible that he said no such thing.

It's possible that my well-medicated brain made that up.

But I doubt it.

And I'm not crazy.

When they revived me and wheeled me out of the surgical theater, I enthusiastically inquired: "So, how'd it go? Did you get what you needed?"

The rolled-eye reaction and "Duh" response is my best evidence that yes, I was annoying, and yes, he called me dude.


So my countdown began. One week to come to jeezus.

Every time my phone rang, I prayed that it wasn't a call from the 212. Nothing good could come of that. I didn't want to know anything until...today.

And here I sit clickityclacking away, chased by the pre-dawn stars, holding on.

Holding on.

What will be will be what will be.
I've got this.