Friday, December 13, 2013

Love

Constant Reader, I wrote this on the Friday after Thanksgiving. I was between bouts of delirium, and I had a message I desperately wanted to share.

I had forgotten about it. I found it last night. I needed this reminder.

Despite my fears and anxieties, it resonates. And I'm glad I did not post it around Thanksgiving. It would have been lost in the good tidings of that day. 

It's appropriate today.

And every day.

Constant Reader, I have not abandoned you.

Chemo is harder than I thought.

Living with chemo is harder than I knew.

There have been adventures great and small, comic and tragic. But that will wait. Those tales will be told...in time.


I so desired for this to be posted yesterday—Thanksgiving.
Alas, t'was not to be.


I wish for all of you that you had a Thanksgiving that celebrated love and life.
If not, there's still time...


Cancer treatment is brutal.

You're broken, debased, inhuman.

You are no longer human.


I'm eyebrows-deep. Barely surfacing. I'm in it. Breathing is hard. So is everything else.
Yet, I find myself in a beautiful place.


My spirit, my soul, my joy, my love has never been bigger, or more real.

I've never been in a more happy place.
Despite the sickness.

0300. Georgetown University Hospital. Bles Building, Room 2011, Bathroom.

I made it. Got here. Sit. Handy-dandy, hand-held urinal (gotta mesaure my pee). Relax. Flow. Finish. Gods, that smells like hell. Chemo-pee. Wipe. Slide-shuffle pants up and on...just...there.

Stand.

Nope.

Not happening.

Brain signals legs: "stand."

Legs wobble, a little...a lot

They're done.
The walls move; the room closes.

Pressure...my head...pressure...swirl...PAIN.

Focus, focus Ray.

The floor is liquid...won't stop moving...

My iris closes...
Pull call rope.

I need help.

HELP.

Love.

We are surrounded by love.

Yet we don't pay attention.

We talk of love, sisterly and brotherly, of parent and child. But we miss more than we capture with our labels.

We need to be Eskimos. We need more words for "love".

So many kinds of love.

So wonderfully expressed.

Look around you.

Look at what people do for you.

Look at what you do for them.

See their eyes. Watch!

My gods, we are surrounded by love!

And we see it so seldom. We recognize it so little.

We can change that.
You can change that.
Right now.

The toxins build. They're poisoning me!

I let them.

My body's no longer a thing I know.
It hurts. It's sick.
I manage. I'm here.

I look out. Stark, raving beauty greets me.

It's not a naughty nurse.

It's the world around me.

I'm grounded. Rooted. Solid.

Yet I'm elevated with the effervescence of love.

It sounds so woo-woo..."the effervescence of love."

It sounds so weird.

But it's true.

Embracing love from all the connections we share...opening my heart...it's made me bigger, better.

I'm in am amazing, rare, astonishing, mind-opening, revelatory, and joyous place. My gods, what gifts I'm given!

I am surrounded by joy.

And no one else sees it.

We can change that.
You can change that.
Right now.


Love.

It's beautiful.

Embrace the beauty.

Welcome the warmth.

Celebrate life and love.
Be well.


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

Thursday, December 12, 2013

Doubt

The poets lie.

Doubt doesn't creep in—it's already there.

It's always there.

It's the vermin that crawls around in you mind's bilge.

When you catch a glimpse of it, you recoil, shocked. It's terrifying, and familiar, and...it's you.

Most of the time the bilge water is contained. The vermin hide, only emerging at night to haunt you—in those quiet times when you're alone with your fears. Most of the time, you've got that. You manage to shoo them away, back to the darkness. But they're always there...

And sometimes they rise up. You recoil in horror and despair as they takes control. Most days you fight back, and you triumph, like the Nutcracker battling the Mouse King—if only for a while. Those are good days.

Then there are days like my yesterday. Days when the vermin scurry about, infecting everything you see and hear and experience, rendering your day a series of failed trials, realized fears, despair. Those are bad days, when Doubt and Fear—Despair's minions—reign.

I've written about how we're all liars.

This is a dose of reality.

My reality.


I've Plateaued


I'm maybe 70% of me. Maybe.

At the moment I feel well enough to write this. Sort of. Most of the time I feel diminished—more like 50% of me.

It's not fun.

According to the plan, in the third week of each cycle I should be feeling good. I should have passed through the toxicity of my chemotherapy. I should have passed through the neutropenia. I should be sleeping decently, my mind should be clear, I should be...OK.

I'm not OK.

I still feel toxic.

Despite my blood counts, I'm constantly exhausted.

I might have an hour a day of clearheadedness.

What does that mean?
Imagine you're sitting in a chair, and you're thirsty. You decide to stand up and get a drink. So, you stand.

Upon standing, you look about you. Everything seems different. "Oh, right, I'm standing."

"Why am I standing?"

You look at the mug in your hand.

"Right, I was going to do the dishes."

So you wash the mug and the spoon that was in the sink. Finished, satisfied with a job well done, you sit back down in the chair.

You look about you.

"I'm thirsty," you think...

My Legs Hurt


My oncologists are baffled. I have a Wheelsucker-specific side effect. My legs hurt.

And they occasionally fail me.

Like I just fell over for no apparent reason fail me.

Specifically, the lower part of my quadriceps hurt, and the pain wraps around my knees on either side of the kneecap. There, it stops. Yes, I have bone pain from the neupogen, but that's different, and that's largely managed. No, this is something weird and wonderful and baffling that has my oncologist emailing all her oncology colleagues to tap into the collected wisdom of the oncologysphere.

Her concern: it may be/become permanent damage.

It starts on Day 2, after I get ifosomide. My post-ifo infusion is pure hydration, to help manage the kidney and bladder toxicities of the ifo. As the IV fluids flow into me, filling me with something blessedly non-toxic, my quads swell. Like a balloon. And, unlike most people, the swelling stays there. For everyone else, the fluid gifts people with fat ankles and feet. Nope, not me. I have to be different. I get it in my monster quads.

I'm absolutely certain that years of riding bikes have made my quads efficient and vascular. I'm also certain that this pain is somehow related to that.

The doctors? Not so much. They simply don't know.

Not that the reason matters a lot. It's the pain that matters. And the muscle failure.

Oh, and the pain sucks.

On any given day I am managing more, exciting forms of pain than I ever expected to have to deal with at one time. I have had hours during which headaches and tinnitus, bone pain, quad pain, and the discomfort of bed have all sung in a chorus of agony.

Yesterday was one of those days.

It's my reality. My body is...

My Body


I had one of those moments yesterday.

I opened the shower curtain and inadvertently saw myself in the mirror.

It sacred me.

I don't know that guy.

I'm bald, bloated, and scarred. The implants make me cringe.

At first, I avoided eye contact. But I forced it. I made myself look.

And as I looked into my own eyes, I didn't like what I saw. I don't like what I see.

I'm haunted, I'm scared, I'm angry, I'm hurt, I'm...

...weak.

Imagine that you can get on a bicycle and ride—far. Imagine riding 180 miles in two days to raise money for to fight cancer. Now imagine doing it on a bike with one gear. And that's your "normal." you're not the fastest, you're not the strongest, but you're capable. It's obvious.
That was me in August.

This morning I tried to walk up the stairs.

I managed seven stairs.

Then my legs started to wobble.

I was done. Were it not for the bannister, I would have fallen. But I knew that.

You see, yesterday, I could only manage five stairs.

Today I did a little better. But it was all in the head. My legs? They were done at five, or maybe six.

I don't know this body.

What I do know scares me

I'm Hurt


Something happened during my first chemo cycle that hurt me deeply. I'm dealing with a lot, and the thing that happened cut me. It was a kind of betrayal, a kind of abuse, a kind of a lot of things that would drive a healthy person mad. Not angry. Mad. Like a Dickens character.

But I'm not healthy.


Hell, I've barely hung on to my senses, let alone any reality, let alone my sensibility. So, when it comes to managing heavy emotions, I'm lost.

Have you ever cried without weeping? Have you ever felt something so deeply that the tears ran on their own, to release the pressure within you? Without shuddering or breathing differently or even realizing what was happening to you?

You simply...flow.

I've flowed a lot recently.

At odd moments, with little provocation, I flow.

It surprises me at first. Then I recognize it. Some hurts are too deep to feel—to let yourself feel. It's too dangerous,

I'm hurt. And it's not going away any time soon.

I'm Lonely

Cue violins...

I've shared this before.

I love my home. I love my life.

But I'm lonely.

My bed is cold.

I have no one to hold, and there's no one to hold me.

I know why.

It won't be permanent.

And I'm not rushing into anything.

But those last three sentences mean nothing to me right now.

I'm dealing with a lot—dealing with far more on far more levels than I know or understand—and I'm dealing with it alone.

Friends, please don't read that wrong. Your support has been invaluable. I deeply appreciate everything that you have done, are doing, and will do for me. I honor you; I respect you. This isn't about that.

This is about the loneliness of a single man—a middle-aged man divorcing, fighting cancer, surviving.

It's about fear.

It's about the loss of love and the search for love and the need for love and the emptiness inside.

It's weakened me.

It will make me stronger. It will make me better, more resiliant.

But I don't care about that right now.

I need what I need.

And it's not here.

...end violins

Doubt Redux


In the past six weeks I've been places I never wanted to go. I've experienced things I never wanted to experience.

What if it was all for naught?

It's a question I'm facing right now.

You see, my doctor has some concerns.

I'm going through hell. I have some side effects that may be permanent. And we're not sure that the chemo is working.

Let that sink in for a moment...


I need another scan. I'm getting it today. I should have some results Friday.

Will I have Cycle 3? Maybe.

Is major surgery around the corner? Probably.

Is there any answer to the issues I'm having with my legs? Dunno.

I'm back in limbo, once again. Hopes and fears collide.

Yep, it was a bad day.
Facebook Post
I'm surrounded by negativity, and i have no buffer/reservoir. I'm worn out. I'm tired. I'm on the border of being depressed. It's not pleasant. I'm struggling through. One more thing and i'll be in a puddle of tears.

Part of me: I've got this.

Another part of me: Nope. Don't got that.

Still, another part of me: One. Step. At. A. Time. So many support me in so many ways. Don't let them down. I can do this. 

Monday, November 25, 2013

Pink-In

Dear AFC (and all who participated in the Rockburn pink-in):

I know this message has been some time in coming, please forgive the delay. I'm writing this from the hospital as I enter Cycle 2 (of four). My life has taken on a timeline of its own, and that timeline rarely synchronizes with most people's "real life." I'm blessed to be living very much in the moment. It's not a bad place to be...

---

Thank you all for what you did at Rockburn to support my in my cancer battle. It is very difficult to communicate what it means to me. It was such a simple thing—a strip of pink tape—yet it held a sincere and complex meaning.

Through my first week of recovery, I had two focuses. The first, to see my Little Angels. They inspire me. In my darkest moments, envisioning them gave me strength.

The second focus was Rockburn.

Why?

The thing. Us. You.

There's something enriching about our races—especially Rockburn. We share an esprit de corps that's infectious. Part of it is the cyclocross culture. Part of it is the joy we all get from competition. Part of it is pure endorphin buzz. All of these components make a heady cocktail of positivity.

But there's something more.

I don't know any of you well. You don't know me. I've spent time with some of you—particularly those who trekked to Louisville—but our relationships are young, new, uncertain.

Yet, every time I encounter an AFCer or a CXHairer, or the hairy Jon Seibold, some spark of magic happens. This crazy motley crew constantly reminds me of the best in people. It's a warmth, a genuine friendliness, a consistent rapport that exists without pretense or attitude or any of the social barriers we normally encounter.

I cannot explain it, and I don't want to examine it any more closely. I want to embrace it and enjoy it and acknowledge it and celebrate it.

And to do so is to celebrate you.

No one had to do anything, yet you did something. It was symbolic, yes, but it was very real. Yes, I love pink! And seeing so many of you adorned in pink warmed my heart and raised my spirits.

That's a lot of love in one place...and it was for me.
Humbled, I remain...


I'm not going to pretend, and this isn't "woe is me", but you should know that it took every ounce of strength I possessed to be there. When I first arrived I labored up the hill and saw Seibold on his practice lap near the nasty off-cambers by the old start grid. He stopped and hugged me and said something amazing. And that gave me a boost...enough to keep walking up to race central.

By the time I got to the gravel hill I was was leaning on my cane in desperation—having just walked more at one time than I had in two weeks. I ran into David Tambeaux and Jelly—and we hugged and they said some amazing things, and I derived the strength to walk up the hill to see the AFC tent and CXHairs Bill—whose kind words and gentle spirit move me still.

And along the way people came up to me and hugged me and said amazing things.

Do you see the pattern?

I was exhausted, and every time I reached my limit, I was buoyed up by you.

Every hug, every kind word enabled me to take another step forward. Each encounter helped to endure and enjoy. I got to watch a few races. I got to hear cowbells. I got to shout encouragement, talk a little trash, joke about handups, marvel at your skills, and relish the experience of a sport and an atmosphere we all love.

And I do love it.

And without you, I would not have been there.

And without you, I could not have endured it.

But you got me through.

And I cannot thank you enough.

So many people said so many wonderful things. They blend together, and that's OK, as I was delirious through much of the experience.

But here is what I took away from the day.

You are a special group. You're competitors—some of you are fierce competitors—yet you have big hearts. And you extended your love to me.

That's a beautiful thing.

And I honor you for it.

---

I'm starting my second cycle. I just refueled at the 20-mile rest stop. This ride? It's going to get harder. There are a lot of miles ahead, and the hills are going to get steeper and longer.

No amount of training could prepare my body for this. I will bonk, and bonk, and bonk again. Yet, I will endure. You see, every sufferfest I've endured has prepared my mind for this. Each training ride and race has toughened me. And every time I read about your races and struggles and triumphs and failures has filled me with a reservoir of lessons from which I draw strength.

Pat Blair said something to me along the lines of "Man, what you're going through is like Patapsco 100, but worse!"

I suppose it is.

But I can endure. With your help. You smooth the trail. You host rest stops and shout encouragement and ring cowbells and distribute handups.

You're there.

And it matters.

And I appreciate it.

And I appreciate you.


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

Thursday, November 7, 2013

Buzzed: Cycle 1, Day 3



Constant Reader, this post is produced immediately on the heels of the previous post. I did not want to lose what little inertia I have.

The end of this post is unedited. I wrote about the sensation of chemotherapy in real-time. At least as I experienced it tonight.

Cycle 1. Day 3
Word of the day: Buzzed!



Facebook Post
Awake and ate an apple to start day. Few symptoms so far. Never had more than an hour of sleep last night, due to all the infusions and checks they needed to do.
I'll catch up on sleep after shift change shenanigans.
So far, so good. We're in front of the nausea with the meds.
Here's planning for another good day!


So I got up and made my bed and made my toilet and performed my morning routine. I redecorated my room, moving the dresser from there to here and re-stacking my books. Constructive stuff.

The hours surrounding the shift change are like Manhattan rush hour. People move in all directions, conversatations bounce off one another like crazy balls in a refrigerator, and so much gets done that its amazing there is anything left to do for the remainder of the day.

I was much-visited—it being the moring after my first "real" chemo.

And to the delight of one and all, everything was good! I had no symptoms of anything, other than exhaustion.

Huzzah!

I was a little stooopid, but not delierously so. It was a good morning!

Once things settled, I focused on a nap. Two hours. That's all I wanted. Two hours of sweet sleep.

So, I did something I had not done before...I closed my room door and pulled the curtain.

And I slept.

I got up after two hours (had to pee, had to check on my pee, must evacuate my pee, my pee...was brown...shit!).

I made the bed again and resolved to drink like a fool.

As I sipped, I snarfed.

Facebook Post from a Friend
When I think of Ray Whitney I often think of Calvin - from Calvin & Hobbs. I am not sure if its the hair (Floppy!) or his sense of adventure. However, this morning this is how I am thinking of Ray - standing strong, showing the world he is ready to take it on! He's got this!



I responded thusly.

Facebook Post
Ladies, try not to swoon!



I was up and buzzing. I felt good (though stooopid), and my body was sending me weird, aggressive, caffeinated signals—without the benefit of my having consumed any caffeine.

I put on some music and shared my vibe with the world.

Facebook Post
I'm awake. Here's the song I'm waking up to this fine day! Yep, I just need a disco ball to accompany it and liven up the oncology ward!



I got a call from Mom. She would be visiting pretty soon. Cool! Company! And I'm feeling GREAT!

I spoke to Nurse Ashley, hoping that the doctors would let me walk around the hospital. I knew my blood counts had not yet been affected by the meds, I felt strong, and I was vibrating with energy. No sleep and steroids seem to like one another.

She left. She returned. I had a hall pass!


Out of the Blue


Some day I'll have the energy to revisit this section and flesh out the how and why this affected me.

In its simplest terms, I received an email from a professional cyclist I have long admired.

It was a short note.

Hey Ray,

Here's to a strong and full recovery! Hope to buoy your spirits and that you're going to be ready for the Krempels King of the Road Challenge 2014.

All the best,

Ted King

I know that means nothing to most of you. I know it seems small.

But this isn't about you.

It meant a lot to me. First, the same friend who sent the Calvin and Hobbes image contacted Ted. He knows him. Second, Ted took the time to send a message to someone he had never met.

And embedded in his response was a goal, a concrete milestone.

Realistic is irrelevant. It's a goal.

I sent him a response, thanking him, telling him I appreciate his tenacity as an athlete, and wishing him well for next year. Ted crashed early in Le Tour de France this year, and the story of his fight to stay in the race gives me the warm shivers.


I told him about the hallway and the steps.

Here's to a full 22 laps and to July 2014! Yup, one step at a time, one pedal stroke at a time.

All my best Ray,

Ted

His July is the Tour. Mine is to be well and go to Squirrel Island in Maine. It's many days and many miles away, yet July has become a milestone.

Many thanks, Peter.

Many thanks, Ted.


Freedom!


Mom arrived. An adventure would begin!

Mom knows this hospital. She had more than a few procedures here, including chemotherapy for lymphoma. She got to play tour guide and show me some of the sights.

Mom shuffled her shuffle steps. I padded about in my yoga pants, a t-shirt, and a wool vest (looking for all the world like I just crawled out after a hard night in a laundry bin). We walked the hospital.

Oh, the sights we did see! A gift store (Don't blink, you'll miss the door!). The coffee shop (your Dad would be there at 0559 every morning with his nose pressed to the door!). The secret staircase that led (This garbage wasn't here last time!).

It was fun.

And I was woozy.

Stooopid I felt, but I still had the buzz.We got to our destination—a food emporium called "Epicurian"—and I began to select my lunch. After serious, mind-numbing, soul-torturing consideration, I worked around the salad bar and found myself choosing odd combinations of things. To any normal person, it would have looked normal. But I have deep-rooted, well-developed habits in the salad arena. This was not that.

I had something of everything green. I went for vinegary things. I went for garlicky things. I got a pile of cous cous...just because. Mom suggested a soup. I looked. I opened the chicken noodle soup and had two, simultaneous reactions. One was that it was a hugely-chickened soup with many lovely noodles. Heartiness defined. The other was that the noodles looked like death incarnate. I was repulsed.

I don't know where any of that came from, but I remembered that I wanted to record it here.

I looked at the other soups, and was dazzled by the brilliant crimson of the tomato basil.

So I got a bowl.

And we went to our table.

And I ate.

And I proceeded to eat thusly.

I would take a spoon or forkfull of whatever part of the salad I was working on, and I put it in my soup. I stirred it about. And I ate it.

And it was good.

And it was bizarre.

And I ate it all that way.

And I was happy.


We walked back to the hospital, and while Mom attended to a Mom thing, I checked my messages. There was an email from a friend. She had stopped by for a quick visit, and missed me!

AAARRRRuuuGGGGHHH!

I knew she was planning to visit, but I didn't know when! Poop!

So, we rushed back to the room—just in case—and I found an apple and a CD on the bed.

She left me gifts!

And on my white board, she left a message.

And unknowingly, she got me back for my "how many laps is a mile" shenanigan.

You see, this young lady speaks and writes Chinese.

And the message...is in Chinese.

And she won't tell me what it says.

Zing!

It was a good day.


Feeling Good


Mom left, and I was left to my own devices—my laptop, my ipad, my phone.

It was a super-social day. I spent a lot of time reading and messaging and...connecting.

That was what mattered. Connecting.

My buzz remained, but I was slowing.

A few more phone calls.

Settling down.

Readying.

Round Two was about to begin.

Try This


Dear Reader, do sit quietly for a moment. Imagine it is a warm day. You're thirsty, but not parched. In front of you is a tall, cool glass of something delicious.

Reach out for it.

Touch the glass. Feel the cool. Savor the condensation that dances on your fingertips.

Pick it up.

Drink it.

Feel the cold flow down your throat and into your warm belly. Sense the liquids mix and swirl.

Refreshed?

Chemotherapy is not like that.

Oh, you get the cool sensation thing. And you get the flowy thing. And you definitely feel it hit your stomach.

But "refreshing" ain't in it.

It's more like devastating.

Now's a good time to remind ourselves of a few very important facts. Chemotherapy is poison. Chemotherapy is bringing you close to death, so you may live.

And I'm taking my first steps.


Facebook Post
I'm fighting it now. First major side-effect...the worst hiccups of my life (combined with acid reflux from hell). Doesn't sound like it would be bad, right?
Wrong. It's awful.
But I was able to get this done in the middle of it. Staying focused...

I spent the next several hours writing. I'm writing this now on the tail-end of it.

I've never experienced anything quite like that.

My stomach was never nauseous, but the hiccup spasms were so strong that they were productive. Worse, it was all acid. Worse, still, the acid was rising in my throat, triggering me to vomit.

Not. Good.

Nurse Carol was my guide. A few phone calls, a few meds, and a long, long number of seconds later, my stomach finally becalmed.

No vomit.

Lots of sweat.

's OK.


Goodnight


I sign off this post oddly.

I don't know what will happen overnight. At the moment, I am receiving the tail end of my cisplatin  for the evening. I have several secondary medications on their way, but in a few minutes I should be able to secure some sleep.

Sleep, please let me sleep.

In this telling of it, I am leaving a lot out of this day. Some of you know that. I will get to those other things in time. I only have so much in me.

I believe I am on the threshold of something here. I believe tonight and tomorrow will be my crossing over into...something.

I feel the drugs in me. I feel them accumulating. I feel their effects. It's happening.

It's real.

I'm not scared. I'm uncomfortable. My focus is becoming animal—that which reduces pain and discomfort is my friend. All else is nothing.

I wrote that last sentence as I gagged on a belch that was most unnatural.

I smell funny. Like medications, not sweat.

My scent and taste are morphing as I sit here.

Platinum is circulating in me. It warms, a little. It burns my throat. My nose is running.

This is real time not edited.

I feel my gums warm, particularly near my rear molars. Warm, then recede, Warm, then recede. My heart feels like it's being bathed under a warm flow of tub water. The platinum warms. And it burns.

It circles up to my throat again, gagging me. Worst acid reflux ever.

And deep in my ears things feel warm, too.

There's an apple in my throat, deep. Uncomfortable. Choking me.

I sip some water. It does nothing. It lands in my stomach like a cold stone and sits there, lumpily. Then it wells up. And the apple chokes me again.


I have to pee. But I'm a little...off. My legs feel like balloons. I'm swelling, and its pooling in my thighs.


Whose body is this?

I'm going to try to sleep now.

I hope it goes well.

Please know that I deeply appreciate all your messages. I appreciate all of your wishes.

It matters.

And as I cross that threshold, I carry you with me.

Respect. Thanks.

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

Wednesday, November 6, 2013

Awesomeness: Cycle 1, day 2

Dear Reader, I'm degrading.

I've had two good days, but the meds are beginning to exact their toll. If Benadryl makes you stoopid, this melange flowing into my body is making me stoooopider and stoooooopider.

It's remarkably hard to do simple things...like type. The words are there; they go from my mind to my fingers, but other things appear on screen.

And so it begins...

As before, this post is authored after the events. Unfortunately, I no longer have the same energy I had whilst living those events. It may come across in the reading. Believe me, Tuesday and Wednesday were GOOD days. I write this Wednesday night, and the wheels are slipping off as I type...

Cycle 1. Day 2.
Word of the day: Awesomeness



It started with a few shout outs!

Facebook Post from Friend
Where is Ray Whitney this morning? Do we have a sighting? Perhaps Nurse Cratchet can help? Pretty boy Floyd how are you doing this morning? Enquiring minds want to know! You've got this!

And Another
What up today? How's your gorgeous and flowing hair?

That's not a bad way to start the day, is it? You awaken, check in on the world, and people are asking for you. Wow. Not feeling lonely at all!

I started a routine. I got up and made my bed. I straightened the room, fussing in a most-OCD way. I then sponge-bathed and brushed my unruly and filthy locks.

I have a feeling that routine will be important soon. I will need things to focus on—marginal gains toward specific milestones. Making my bed is so abhorrent to me on a normal day, that it makes perfect sense to adopt it in this environment. Whatever shakes me up.

Facebook Post
Hey! I'm here! It's been a really good day! I'm riding the positive wave at the moment, and it is good.


After writing that on Facebook I worked to put together the "A Punch in the Neck" article for Wheelsucker.

Nurses and doctors came in and left. I was poked and prodded. And in walked two of my friends, who happen to be colleagues. Surprise visit! Real people!

I played host, and we chatted, and in walks Mom!

Wow!

Visitors are good for the soul. Fortunately, I was feeling good and up for the visits. My energy was up and we were able to joke and gab and just enjoy.

My friends left, and Mom and I ate lunch together. Just for the record, the food here is less-than-desireable. Much of it is horrible. A few things are terrifying. It's just the kind of food that you want nowhere near you when feeling ill—so let's serve it up!

Mom, however, delivered real food. It was good.

Poop


Among the joys of hospitals—and chemotherapy in particular—is that your bowels become the focus of much interest, attention, and conversation. Meds make you constipated. And that can be bad.





As a two-a-day man, this is of profound interest to me.

However, at this point in the narrative, I will refrain from much detail. Suffice it to say that I am still able to produce, though at odd intervals, and I have started on a maintenance dose of Colace.

Pee


This is serious. I need to watch for this.

One of my medications—ifosfamide—causes serious kidney and bladder damage, if it is not adequately managed with other medications and water. So, I need to drink—a lot!—and I need to monitor my pee.

Yellow = good. Brown = not so good. Blood = bad.

On Wednesday I drank 6 liters of water, in addition to the three or four bottles they pumped into me as IV fluid.

My pee is brown.

I got more drinkin' to do.


Steppin' Out


I'm causing a ruckus.

When my doctor and the resident visited, they mentioned that I should be sure to get up and walk about to help "keep everything moving".

I responded: "Great! How many laps?"

Dead air.

"How many laps in a mile?"

They didn't know, but they assured me that the nurses would know (because we all know that nurses know everything, make everything happen, and generally run the joint!).

So, when my nurse and her assistant walked in, I asked.

Ashley, I have a question for you. It's a test. I was told you know the answer.

I looked at her assistant, Michelle.

And if she doesn't know, you MUST give her crap about it all day!

Awkward smiles returned to me.

So, here it is...how many laps of our ward make a mile?

Silence.

She did not know.

And thus began a day-long adventure on the oncology ward!

My room sits across from the office of the administrative nurse for the floor. All day, people go in and out to talk about this and that. I see it and I hear some of it.

For most of the day, the hot topic was: "how many laps make a mile?"

One of the nurses called the physical therapy group, and they estimated that one lap of the hallway is 250ft. Not entirely trusting that measurement, we decided to round up, and it is the officially unofficial decision of me and my nurses that it takes 22 laps to walk a mile around our ward.

You already know what's coming next...

My "real chemo" was scheduled to begin after 8:00pm, when my first, 24-hour infusion was completed. To get myself up for it, I started to walk. I got through 16 laps (with an average of 120 paces per lap), when another visitor arrived.

Monster Man brought himself...and chocolate! Whoo hoo! We chatted and I ate a little and partook of chocolate and was very happy. Bronwyn came in and started my pre-meds, so I was fed and wired.

Monster Man suggested that we finish my laps. He's a competitive runner, so he completely understands my need for concrete goals.

We walked, and talked, and laughed, and everything started to happen a little more...slowly.

The pre-meds gave over to the real meds, and it truly began. Monster man left, and I remained with Bronwyn the Good, and a long night before me.


The Night from Hell


Actually, it wasn't that bad. It was simply unsleeping.

At no point did I get more than 60 minutes of sleep before someone had to do something to check on or give me. I was infused with different drugs in close succession. I swallowed pills. I had my vitals monitored. Bronwyn extracted blood. It was a long night.

I slept when I could. I dozed a bit.

And it was morning.

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

Tuesday, November 5, 2013

A Punch in the Neck

Constant Reader, today I begin a new label on my blog. "Chemotherapy". It's finally here!

Please note that I am writing about yesterday. I post this late on Tuesday, yet the events of this post are from Monday. I have been blessed with a very social day. My mother visited, as did two of my closest friends (who happen also to be colleagues). Those visits, in addition to the poking, prodding, measuring, prepping, counseling, and other actual hospital-related occurrences made this a busy day!

Cycle 1. Day 1.
Word of the day: Patience


Sunday night I couldn't sleep. go figure

After hacking at the hospital wi-fi for a while, I finally fell asleep at 0300. At 0500 nurse Maryyyy awoke me for bloodwork and vitals.

I have two nurses named "Mary." One spells her name "Maire". She's Irish, 'natch. My overnight nurse also was Mary. Spelled "Mary." Clearly that was unacceptible, so I challenged er to come up with a different spelling.

Dutifully wrote her name on my whiteboard. She wrote "Maryyyy".

Now, those of you who know me know what happens next.

I pronounced her name.

Loudly.

"Mar-ee ee ee ee" with a nice, high-pitched, banshee roll at the end.

And thus she became Maryyyy.

So, after Maryyyy took my precious fluids and my other numerical particulars, I dozed for another hour before the ward's morning rhythm made it difficult to sleep.

There's a shift change at 0700 and 1900. The hours before and after the shift changed are noisy and chaotic-filled with bustle and shuffle and this and that and needles and arm cuffs and hoses and plugs and beeps and rings and clunks and grunts.

You don't come to the hospital to rest.

Maryyyy became Maire at the shift change, and the wait began.

Facebook Post
My first post from my first morning in the clink. I'm on three hours' sleep, nothing by mouth since 11:00 last night, awaiting a procedure. Kickin' it.

To Port or Not to Port


This nurse and that doctor and this resident and that administrator and a few dancing bears stopped by to update me on this and that and the other. It was a busy early morning. Though, I may have hallucinated the dancing bears.

Finally a decision:

Facebook Post
It will be a port. It will not be until 2-3 this afternoon. That will be a 15 to 17 hour fast on less than three hours' sleep.

And I realize that sounds like whining. It's not. I'm in a good place and a good mood. Hungry? Yes. Tired? Yes. But I'm not out digging ditches, and I have wonderful people around me. Rock on!

Yes, I was hungry, but that was tolerable. It was the dry mouth that was getting to me. Hospital air is dry. It's not crazy dry, like a small house with blown-hot-air heating. But it's sufficiently dry, such that after 12 hours with nothing by mouth, its irritating. I hadn't had cotton mouth in years. Ick.

So, the afternoon passed. They started another slow-drip bottle of saline (to keep me bloated!), and I waited.

I received two visits from the chaplain corps. The first was Father William (call me "William"), a Craig Ferguson doppelganger. He looked and sounded so much like the comedian/talk-show host that I kept expecting him to break out into some briliant "How to Train Your Dragon" Scottish-ism.

My other visitor was a charming, nattily-dressed gentleman (whose name escapes me at the moment). I had the sense that he was a Baptist minister—t'was something about his dress and presentation. In both cases I told them that I appreciated their visits, that I was doing very well (as nothing had happened yet), and I hoped that they would stop by in later in the week when I expected that things would get...different.

You see, Email, Facebook, and a visit from my parents kept the day moving along. I was not lacking entertainment. Social media, reading, the phone...all were working for me. I was in a really good place.

But then, it is Day 1.

And I'm still feeling fine; but that may change on a dime.

The Transporter


I was called down to get my port imported. I was told my Transporer was on his way.

I love the job title, and considering that the Jason Statham Transporter movies are among my guilty pleasures, as soon as he arrived I asked him if we would have our won theme music. (Seriously, flying Audis, over-the-top fight sequences, and Eurotrash club beat soundtracks are not my daily fare, but sometimes you need to sit back with the popcorn and just gorge yourself!)

We didn't have theme music, but we had a pleasant conversation. He was 35, but he didn't look a day over 17. He had been at the hospital for more than ten years, and he knew everybody as he wheeled me from building to building, I felt like I was being escorted by the Mayor of GUH.

We chatted, and it turns out her was getting ready to leave the hospital permanently. He finished his degree in crime scene investigation and was soon to be on the market to do crime scene analysis. Yep, he admitted to watching too much TV. But he took a course in the subject, loved it, and he's attracted to the dynamic adventure of it. Not so much the paperwork, but he said that for the money (which sounded pretty good), he would put up with it.

Good luck to him!

Waiting, More Waiting


I was wheeled and left in the hallway of the radiology center in which I would have my procedure. (As a reminder, installing a port involves entering my jugular vein to gain access to my vascular system. They then treading my veins with a long tube that connects on one end to my subcutaneous port, enabling the infusions to flow directly into my heart.)

I waited and listened, snuggled under three pre-warmed blankets. They keep that area cold—I believe to
help maintain a sterile environment, and because many of the radiology machines generate heat.

Eventually I was collected and briefed. I signed the permissions and got prepped. I gave them two warnings.

First, I warned them that I am chatty when under sedation. It was possible that I would talk through the entire procedure (and not remember a thing about it for years). I told the nurse the story of my wisdom tooth extraction (I think I was 18 at the time). When I emerged from the sedation, I couldn't figure out why everyone in the room had stupid smiles on their faces—like someone had pulled off a successful practical joke. I learned months later (of the nurses was friendly with my parents) that I had sung along to the muzak—throughout the entire extraction—and that they were amazed at my note-perfect performance of all the Barry Manilow tunes.

Second, I warned them that my resting heart rate is 43 beats per minute. Dear reader, if you are athletic, and you go in for a procedure, FOR GOD'S SAKE WARN THEM! most of their alarms go off if you drop below 50 bpm. And those alarms make them very nervous. I needed to let them know that I would drop into the high thirties—and it was OK!

I was brought into the room, and slid into bliss. The placed me on a wonderfully warmed table. It was lovely. The room might have been 50 degrees, and I got to lie on a heated mattress draped in oven-warmed blankets. The next thing I knew, I was being lubed (for the electric sensors) and shaved (for the incisions).

Pampered, I was. Lubed, shaved, warmed...how would this end? People pay good money for this!

Getting It Done


They started giving me sedation. I overheard Theresa, the nurse anesthesiologist, say "He nailed it...43." All was good, and I drifted into my twilight.

I won't tell you precisely where I went in my dreamland, but I can tell you that it involved two things.

First were visions of a specific woman and the positive resolution of my crush on her. No, not sex (shocking, I know!) It was lovely. That segued (in the way of Dream) into adventuring on various waterways on a stand up paddleboard. Visioning, I was. Alone and with company, in fine weather and not-so-fine, I early-spring paddling on my local reservoir and summer paddled in Maine. Lovely escapes.

As I paddled with my Lady of the Lake, dappled light and bliss, I was overcome by the oddest sense that someone had punched me in the throat. I emerged a little and heard some operating room chatter. I head a few grunts that may have been mine, and, indeed, I someone was punching me in the throat.

"Meh", I thought, and I dove back down into Dream.

You know how you're having a great dream, wake a little, and then try to get back into the dream at precisely the same point you left it? And you know how that happens...like...never? Not then. Not me. I opened my Dream eyes and found myself right back with her, riding the wave, splendoring the breeze, happy.

Sedation is joy.

And it was done. I emerged fully. They told me all went well. We as they cleaned up I lay there and we chatted about heart rates, triathlons, endurance events, and injuries. My people!

I spent one hour prone in the recovery room. With the major vacular incisions, I needed to keep my blood pressure steady and low (my normal BP is 117/68) to allow everything to clot and heal. Springing a leak is a bad thing!

Transporter II


When it was time to go, my next transporter appeared. He was a well-built, handsome lad from South Florida. Women and men swooned in his wake as he wheeled me through.

The best part wasn't his gorgeousness.

The best part?

We had a soundtrack.

When I asked him my standard question, he said: "what do you want to hear?"

What d'ya got?

"Christmas songs."

Cool! Let's roll!

And he whistled Christmas carols as we rolled.

It made my day!

Back at Home


Facebook Post
Just got out of procedure. Feel like ive been punched in the neck.
Oh, yeah, right t. Thats because i was juet punched in the neck.
Note, this is precisely how I typed it when I posted it.
Sedation is joy!

It was 1900 Monday night. The original plan was for me to start my infusions at noon on Sunday. We were more than a little late.

So, as soon as I hit the room, Maire was on it. She brought me some food (a fabulous sandwich procured by my parents earlier in the day and stored in the fridge for just this moment). and as I ate she started my pre-meds. For those in the know...
  • Benadryl - 50mg
  • Pepcid - 20mg
  • Zofran - 16mg
  • Dexamethazone - 20mg

These went directly into my new toy. It felt...weird. I noticed the temperature difference of the injections. One was warming, a gentle cascade of happiness passing along my soul. Another...not so much. Imagine a cool wave passing though your heart—like one of those ice-deep fears that sometimes befall you. That's exactly how it felt.

The Benadryl came last.
Facebook Post
Getting closer...just had my pre-chemo medications fed in through my port. Benadryl, Pepcid, Zofran, Dexamthozone. I felt the warmth of one of the meds—giving new definition to "heartburn" and e Bemadryl has hit me like a jackhammer.

I've got this...

Imagine someone walking up to you and smacking you across the face with a large fish.



That's exactly what it did not feel like, but the affect was the same.

It was shocking and disorienting and unexpected and mind-bending.

It was drunkenness without the taste.

It was stoopidity.

It involved drooling.

I. Was. Out. Of. It.

The rational part of me knew that I had an hour before they would administer my first actual chemotherapy. It wanted me to soldier through Delirium, so I would be lucid enough to respond to the infusion. Anaplylaxis is the initial side effect of Taxol, and I needed to be aware enough to read my body's reaction to the drug.

Meanwhile, little bits of me kept falling off. Rationality be damned! The residual sedation and the fresh Benadryl synergized somewhere in my metabolism, and I was a hot mess. I felt like a Popsicle on a warm day. At my core was the thin stick of my rational resolve. Everything else was melting.

With my hands free and my food eaten and Maire leaving, I quickly made two phone calls—one to the Little Angels, the other to my parents.

I have no idea what I said.

All I know is that I made contact, and it felt good.

I held on. It was exactly like the long chase I did during Pelotonia in 2011. Only now, my rabbit was the minute hand on the clock at the foot of my bed. I stared at it, willing it to change, to move, to advance, to tick...


And So It Begins


The clock stuck. In walked Bronwyn, my nurse for the night. Welsh. clearly, I am destined to be nursed and counselled by Great Britian—Scottish chaplain, Irish and Welsh nurses...for me, it's perfect.

She hooked the bags onto the IV tree, connected the tubes, and it started to drip. Chemotherapy began.

I would receive 520mg of Taxol (paclitaxel http://en.wikipedia.org/wiki/Paclitaxel) over 24 hours.

We chatted a little about nothing I can remember, both knowing that our talking was merely a pretense as we awaited any reaction to the meds. Chances were, if I reacted, it would be in the first ten minutes.

No reaction.

Nothing.

Thank the gods!

I relaxed, embracing the warm bosom of my medications. Twilight became dusk, and I slept.

Sleeping with the Angels


My normal-life sleep routine includes me waking 2-3 times every night. In the hospital, your sleep routine includes being awakened 2-3 times every night as they tap you for blood and measure you for temperature, blood pressure, heart rate, and blood oxygen level.

In other words, it was a normal night.

When I slept, I slept.

When I emerged, lovely female voices purred as they did things to me. When they left, I went to the bathroom, returned to my cocoon, and slept some more.

I passed a restful night.

And it was good.

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

Monday, November 4, 2013

Scared

Constant Reader, this is a break in style. I'm seeking a lighter way to approach a heavy topic.

It's also notable in that this post published itself some days ago. It seems that I drafted it and set a future publication date, to force me to work on it some more. So it dutifully did what I told it to do. Only a handful have read it, so I am re-posting it.

Considering that today is the day the drugs start pumping, it's timely.


I'm running out of ways to phrase "I'm scared." So—to increase variety—I consulted a thesaurus.

Here's what I found (commentary in parenthesis):
  • afraid (duh...)
  • anxious (yep)
  • fearful (right on)
  • panicked (if I let myself be...but I have it under control)
  • panicky (not a bit...seriously...I can be panicked without acting panicky)
  • startled (nope)
  • petrified (only in very particular moments, and only for a second)
  • shaken (absolutely...far more than stirred)
  • terrified (at times)
  • aghast (nope)
  • having cold feet (not so much)
  • panic-stricken (nope)
  • terror-stricken (nope)

Ours is a rich language, and it's flexible. My current personal favorite: "shit-stained".

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


73 Days

Today's word of the day is "transitional."

Seventy three days ago I was symptomatic. Odyssey II had begun.

Over those 73 days I visited four hospitals. I tolerated myriad needles. I survived multiple scans. I was twice dissected. I attended way-to-many office visits. I researched, I wrote, I called, I listened, I argued, and I traveled.

Oh, the places I've been.

When this began, I weighed 174. Today I weigh 198. That's doctor's orders, a lot of pizza, some stress, some I-don't-give-a-shit-ness, and a lot of not riding my bikes.

And after 73 days, here I am.

I'm in the hospital, and things are happening...but slowly.

I should be 12 hours into my first infusion, but there was a problem. Not a huge problem. Not a threatening problem. But a day-delaying problem.

The quick version:
  • My doctor preferred that I not get a mediport (an implant that is placed near the collarbone that has a tube that is inserted down to a major vein near the heart, enabling infusions without many needles going into fewer veins in my arms and hands).
  • My first infusion lasts 24 hours and contains Taxol, a drug that is corrosive to tissues. If there is a leak—such as might occur were I to loosen or dislodge the IV needle while sleeping or being my normal klutzy self—the Taxol will corrode tissue. That's bad.
  • It is a relatively new policy on the ward that any Taxol infusions lasting more than three hours need to be administered through a mediport or a PICC line (a peripherally inserted central catheter that gives prolonged intravenous access, running a line from your bicept through the shoulder and down toward the heart).

Talk amongst yourselves. I'll wait.
Doctors, nurses, and small furry animals talked it through. For three hours.

The decision...I would get something on Monday.

As of this writing, I still don't know what it will be—PICC or mediport. I'll learn in a few hours this wee morning, most likely before you read this.

In fact, it is very likely that you are enjoying a cuppa as you read this, and that I am sedated in a sterile environment while a team of very talented people plunge a foreign object through my veins toward my heart.


So, how does that coffee taste?



In other news, this ward is heaven for the single man. The scenery and conversation are perfectly amenable to my maintaining a healthy outlook and metabolism.

Was that too subtle?
How's this?

Libido: 1
Cancer: 0

Differently inspiring and uplifting was the kindness and generosity of a very dear friend. He drove me in today...and stayed for four hours. He could have left at any time, but he chatted with me through all the "to port or not to port" conversation. We talked old cars, and told him a car-related something on my Bucket List. He even paid for a lunch of real, edible food and a few extra foodstuffs.

Wow.

It was wonderful, and it set me up for a good day.

I'll dribble drabble more when I can clickityclack tomorow. I'm in a good place right now. I'm optimistic. I'm up. Things are good. But it's almost 0230. I think I'll sleep now.

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


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.

Easy!


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.



Laugh.

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.

Laugh.

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.

Don't.

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.

Why?

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.

Ambrosio: 
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

Tay

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.

"Tay."

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.

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.

Practice

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.


 

Epilogue

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..."  

Old?

"No."  

Bald?

 "No, you didn't start chemo."

Gobsmacked once again by the precocious one...  

Weak?

"Yeah, weak. You'd be lazy."  

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."

OK, indeed.  

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