So, How Are You Doing?

A lot of kind friends have asked me this question recently. Here is a quick update…

I had a CT scan in January. The tumor appears to have reduced in size in two of three dimensions. The other was larger. Since it is soft tissue, it makes sense that it could have changed shape. The good news is that no other tumors were spotted. Other than that, it was a good CT…no news is good news.

I am still recovering from chemo. I have neuropathy in my toes and fingers. Sometimes I get befuddled. I no longer get the seizure-like brain shocks that were so debilitating during the first three weeks post-hospital. Even so, my brain has distinct limits. More than one source of stimulus is almost impossible to handle. I cannot easily read. I absolutely cannot read and listen to music simultaneously.

My sense of taste is coming back. Chocolate still is a bit…odd. Most other foods are fine. Plain water makes my stomach churn—this is psychosomatic from my time in the hospital.

I sleep better now. I feel I have mostly de-toxed, so I am no longer waking in deep pools of sweat. And when I awaken, I know where I am. That’s a good thing.

I have pain. The tumor hurts. Certain movements let me know with absolute assurance that there is something wrong.

I’m weak, but I’m stubborn, so I do too much. Think snowshoveling. Think sledding. Then think sleep and ibuprofen.

I’m weak, and sometimes things go wrong. I’ll be walking along, and my legs will declare that they are quite done with walking, thank you very much, “so we’ll wobble a bit and freak you out”. Yeah, it’s fun. It’s also why I will walk with a cane, even though I seem OK. At any moment, things won’t be ok.

And that’s the gist of it: at any moment things won’t be OK. And it definitely freaks me out.

Emotionally, I’m on a roller coaster and I’m trying to keep the brakes applied as much as possible, while at the same time allowing it to run. It’s a delicate balance, and it’s not for the faint of heart. It’s also not something for a person who does not live alone. If there is a good part of my isolation, it is that I am learning to (cope, manage, function, thrive) on my own.

Spiritually, I’m learning to let go. It’s not easy. I don’t care about a lot of the things I did in former times. Some things that linger shouldn’t. Others should. I’m working through which is which. It gets confusing.

And that’s another gist…there’s a lot of confusion and uncertainty; l am learning to live with it.

Whether I like it or not, it is what I need to do.

I do eat too much—of the wrong things. That’s my primary vice. My other is that I long for a partner.

I’m also dealing with a lot of fear. I’m writing another post about that. Stay tuned.

At the moment I am without much humor. Hope is assumed, not “hopeful”. Positivity does not reign.
There’s a lot of “getting on with getting on” in my world.

The Little Angels are what keep my head. Time with them is precious. I know it.

So, that’s the quick update. Nothing poetic or prosaic. It is what it is…

…for now.

Cycle 4, Day 2 - Threshold

Constant Reader, no blog has been an indicator of no energy...

You have just passed through another holiday season. You crossed the finish line of another annual lap around the calendar. Congratulations! I truly hope your time was filled with celebrations of live and life, and that any stresses have passed into the ether. May your memories be joyful!

I have just crossed into...Cycle 4. I started this chemotherapy journey at the beginning of November (too early for Christmas music, thank you very much). It's not nearly over.

Oh, I know a few of you Polyannas out there who will say "It's your final Cycle! Rejoice!" (All right, they won't say "rejoice", that's the Christmas hangover affecting me...but you get the idea...) Or "You're nearly done, you've got this!"

I appreciate the positivity, but I don't share it--not in that way. That thinking doesn't work for me. Never has; never will. I'm not the guy who responds well to "things could be worse" or "look on the bright side" types of encouragement. But that's me, it works for others.

What works for me is a style that recognizes the situation...and offers soft encouragement.

Don't get me wrong. I approach this Cycle as positively as I can.

But it scares me.

I've been sleeping, but restlessly.

Let's play catch-up...

How are you feeling?

I'm tired. Very tired. In the final week of Cycle 3 I was sleeping 14-16 hours a day. Near the end of the Cycle, nausea and reflux reappeared, but I chose not to take the meds to manage that, as I was just coming out of several days of constipation. Manage one problem, create another.

So, I enter Cycle 4 exhausted, depleted—physically compromised.

Any other symptoms/issues?

I have had a runny nose and scratchy throat for five days now. The good news is that I was taking Cipro (antibiotic) throughout my recovery period, helping to minimize any cold.

Fortunately, it's not something viral; that would be a serious problem.

And there's another thing.

There's no real subtle way to say it, so here goes...

Three days out of the hospital—Christmas morning, for those of you keeping score at home—I awoke with a special present. One of Santa's elves decided to leave me with a personalized, intimate gift.

I awoke with a dime-sized cyst on my penis.

Let that one settle in for a minute.

Dime sized. Penis. Ouch.

I have no idea what caused it. Sexual activity—while very high on my to-do list—has been absent for longer than I care to remember. And I had not been doing that other thing (stop snickering there in the back!). Hell, chemo has rendered functionality down pretty much as compromised as can be. When I do get aroused, it is a huge event! (Snickering now permitted.) It's a reminder that despite my unicorn uniball status, I am still a man. And that is a good thing.

The cyst, not so much.

So, what happens when you are immunocompromised and you have a cyst on your naughty bits?

You worry. You monitor. You hope it isn't doesn't grow into a Yellowstone-scale supercyst.

And you tell your doctors and your nurses...just in case.

And they examine it and give you a look that you can't translate.

And you move on to the next thing.

Because there are plenty of "next things".

Such is chemo.

So, er, moving along..how were your holidays?

Difficult. Joyful at times. But I won't lie...they were difficult.

My care team and I moved mountains to make Christmas wonderful for the Little Angels. Ex-BCB and I carefully planned things, they were wonderfully executed by her and the team. I spent a little over two hours with the LAs. It was wonderful!

Then they left.

And I sought the license of the sled that had hit me.

I slept a ton that night, only to wake the next morning for a doctor's visit.

I was on a treadmill of trying to be well and spend time with the LAs and do things. But my body wasn't cooperating. It wanted none of it. All it wanted to do was sleep.

Every once in a while in a movie there's a scene where someone is hit on the head, or exposed to an explosion; they're dazed. Everything happens in slow-motion, or one of those weird alternating-frame techniques that makes your stomach lurch and swirl. The character stumbles. You stumble with them. The ambient sound—after the blast—becomes a whine, or a buzz, or a high-pitched siren. In the background are vague noises that sound familiar, but you can never quite make it out. You can't parse it. You—as audience—you feel the detachment. You're disoriented. You buzz—with danger, and excitement, and confusion.

I spent a week feeling like this, without the Iggy Pop soundtrack.
But that vibrating slow-motion head rattle happened every time
I would stand up, and often when thinking too hard—like
deciding whether or not I had the energy to go to the kitchen.

That's how every day felt. That's how I felt each time the LAs would leave my home. They are absolutely wonderful! They are an explosion of life! Of energy! Of joy!

And they leave me shattered.

That's how the holidays were: moments of joy sandwiched between bouts of mind-numbing exhaustion.

How's your head?

I don't want to be here.

I don't want to be strong.

I don't want to inspire.

Hell, right now I don't understand how I can be inspiring. I want to stay at home in bed clutching onto my pillows sleeping, resting, convalescing, savoring, sweating, crying, groaning, and sleeping more.

The last two nights at home were two of the hardest nights in memory. I know what's coming this cycle. I know where I am and how I'm feeling. And I'm not looking forward to it.

And I'm alone.

When I most need someone else, no one is there to hold me.

That's not easy.

Ah, hell. I need a woman in the worst way!

But I will say this about that: I don't wonder why, or say "woe is me", I acknowledge it and try to move on. Sometimes that's easier than other times. I would be lying if I said otherwise. But I see myself getting stronger for it. What that means for my future...?

I wear the cute shirts with the clever sayings, but I'm a liar. "I've got this"; "I pooped today!"; "You can't scare me, I have daughters."; "Careful, or you'll end up in my novel."

In truth, all I want to do is curl up in a ball.

And the hard stuff hasn't started yet. That starts later today. Part of me says: "Gods, spare me this."

But another part of me...lurking and not lying...says: "Bring it."

The race is about to begin.

What does that mean?

Endurance athletes will tell you that the race doesn't begin until you've reached a point you're never reached before. When you exit your comfort zone, the real work begins.

It could be mileage or effort or time...most of the time it is something mental—purely internal.

It's your race, and it's the only one that really matters. In truth, how you place in the event is merely a result—it's a byproduct of your race. It is not the race itself.

Think about that for a minute.

To win your race, you need to fight your demons, battle your doubts, confront your fears.

You need to stand tall in the maelstrom, hold your ground, and advance—pace by pace—to get beyond.

Your comfort zone is behind you—it's past-tense, nothing more than history. It informs, but it does not solve. It gives a measure of confidence, nothing more.

What gets you beyond? Your resolve.

My race begins at approximately 1500 hours today.

How will you win?

Some time ago I got a phone message from a friend of a friend out in Ohio. He's a serious cyclist, several years my senior. He's the real deal. He's a good man.

I'm paraphrasing what he said: "It takes a tough bastard to be able to ride with me the way you did a few years ago. You're a tough bastard. You've got this."

A few days ago I got a text message from the friend who routinely asks me what the word of the day is. She wrote: "Stay strong. You are one tough bastard."

I have other messages of support as well. But these two stick out for me.

One reason is that two people who have never met one another have characterized me as a "tough bastard".

I think I'm flattered. Better'n than "fat bastard". (Though I do look forward to losing this extra weight!)

The other reason is that they articulated precisely the attitude I need to get me through my race.

I need to channel everything everyone is sending me—the positivity, the love, the support. All of that is the the raw material.

I need to heat it with my burning desire to live.

I need to stoke that fire with my love for the LAs and for so many others.

I need to focus my energies, crafting something beautiful and hard and strong.

I need to become unbreakable.

I need to make a diamond.

And it takes a tough bastard to do that.

Anything else?

• I am deeply humored by the small patch of hair that refuses to fall out of my left ring finger. All my other fingers are bald. Not this one. One patch. I love it.
• Food is good. But chicken wing and fajitas were a step too far. Let's just say that I now know how to defeat constipation.

• I am struck by this quote from Bruce Lee:

Forget about winning and losing; forget about pride and pain. Let your opponent graze your skin and you smash into his flesh; let him smash into your flesh and you fracture his bones; let him fracture your bones and you take his life. Do not be concerned with escaping safely—lay your life before him.

• I want a beer. Just one. With a slice of pizza. Just one.
• My nurses are awesome.
• You walk 20.6 laps of Bles 2 (my hospital ward) to walk a mile. Now you know.
• I woke up last night at 0200 with an irrational craving for a hard taco. Clearly, I'm pregnant.
• I like being bald. And I like having long hair. Everything in-between...
• Life is beautiful

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

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.

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. 

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.