Come to Jeezus

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

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

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

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

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

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

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

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

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

Old Friends

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

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

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

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

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

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

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

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

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

And it was good.

Walk the Walk

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

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

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

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

Unsettled, deeply. I called another friend.

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

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

He answered.

"Tell me something good," I said.

He did.

Major uplift mojo.

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

Come to Jeezus

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

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

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

You have faith. You doubt.

You're tested, and you emerge affected.

You're no longer the same. Something shifts.

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

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

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

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

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

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

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

Let's roll.

Answers and Questions

Beau (as The Nurse), Dr. Tully (as The Resident), and Dr. Bajorin (as The Dude) flowed the information, and I was awash in detail. Some was review, some was annotation, yet more was new. It was a lot to absorb.

And that, Kind Reader, is the best explanation for the delay in this post. It was intense, demanding, and—while not overwhelming—challenging. It took me a week to process it. No mere train ride was going to help me after this one.

Biopsy 2 had gone well. As it happened, the bowel prep was sufficient for Dr. Erinjeri to get a straight shot and a clean sample. No ballooning of the bowel was necessary. So, crapping my soul proved valuable. Lesson learned.

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

Incontrovertible evidence was the goal. We fell short.

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

We were in the place before Biopsy 2, where we had mapped out several possible outcomes:

1. It doesn't work. There may be lesions that prevent the tissues from separating, blocking the needle from a clear path to the tumor.
2. We get no better data. We may get samples, but the tests may have the same or similar results as the first biopsy.
3. We get more data. This is the plan/hope/desire. We want viable cell samples to administer the tests. 

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

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

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

Walks Like a Duck...

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

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

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

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

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

No surprises. A body blow, but no surprises.

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

No reservations.

Devilish Details

The recommendation is thus:

• TIP chemotherapy
• One month (or so) for recovery
• Abdominal surgery to remove whatever remains

Three bullets. So simple.

Oy.

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

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

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

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

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

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

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

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

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

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

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

Neuropathy

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

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

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

Fun stuff.

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

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

This scares me.

Constant Reader, are you as tired of reading "scares" and "scared" as I am of writing them? Crikey. Maybe I need to dig deeper into the thesaurus. Perhaps "tremulous", "quivering", or "shit-stained" would be better?

As it is, my feet get numb. They're numb now, as I sit typing. My hands and my feet get cold on the warmest days, and they're often numb. It can be annoying, but I deal with it. It's normal; it's my normal.

Listening to The Dude talk about neuropathy hit home. I ride bicycles. I love to ride bicycles; it's a passion. Riding with permanently numb feet, weakened muscles...

Can we please change the subject. Hey! It's raining! Cool! Mud for the weekend's cyclocross racing! 

Neuropathy is duly noted.

(breathe)

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

You're Old

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

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

Sitting with The Dude, I felt old.

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

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

So, I asked about it.

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

The answer was long and detailed.

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

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

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

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

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

So, what about age specific side-effects?

The biggest is myelosuppression.

Constant reader, an interjection. Myelosuppression is condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and platelets.

Because the bone marrow is the manufacturing center of blood cells, the suppression of bone marrow activity causes a deficiency of blood cells. This condition can rapidly lead to life-threatening infection, as the body cannot produce leukocytes in response to invading bacteria and viruses, as well as leading to anemia due to a lack of red blood cells and spontaneous severe bleeding due to deficiency of platelets.

You will have a high risk of infection. Your low white blood cell count will make you susceptible to everything. And we don't know how you'll respond to pegfilgrastim (Neulasta). You're going to need to be vigilant about staying clear of potential infection.

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

Gentle Reader, let's take a step back.

• A fever can kill you.
• Expect to be admitted at least once every cycle for some sort of complication

Now, look at the calendar. Let's assume I start chemo during the last week of October. That means that I'm going to be immunosuppressed through the holidays...through cold and flu season.

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

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

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

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

Ouch.

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

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

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

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

Jeezus.

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

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

Prognosis

I don't have one.

It's sobering.

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

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

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

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

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

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

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

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

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

Logistics

Finally, we talked about the gorilla in the room.

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

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

The Dude gave me three names at three facilities in the Washington, DC area.

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

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

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

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

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

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

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

Grind

On the road again...New York awaits.

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

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

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

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

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

When Did It Become October?

This all started the weekend before Labor Day.

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

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

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

How's It Going?

My second biopsy was blissfully uneventful.

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

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

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

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

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

But I doubt it.

And I'm not crazy.

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

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

Interminable

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

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

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

Holding on.

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

Lonely

Constant Reader, this is an uncomfortable post.

Don't do it.
—I have to.
You're a fool.

I'm Divorced.
I'm lonely.
There's no shame in it; but its not OK.

Fourteen years of marriage—gone. What lingers, lingers—and that's entirely about the children. Inside me there's respect, and appreciation, and a love for which there is no name. But the marriage is over. That dream is a memory. What remains...is not what this is about...

I'm lonely.
Such understatement.
My bed is cold. My house—silent. My calendar—open. My heart...

I Have Cancer.
I'm alone.
I go inside to cope. I'm vulnerable, I'm frightened. I'm...

I'm lonely.
There's no shame in it; but its not OK.

This is not funny. Where's the funny?
—It's not meant to be funny.
So, why the drama?
—Understanding? Confession? Awareness? Compulsion? I don't know the word, or if there is a word....I'm being honest, and open, and...
You're being a whiny little bitch.
—Stop it. I'm not Morrissey. I'm not a Smiths lyric writ large. I'm not whining; I'm stating.
Difference without distinction...you're whining.
—I don't want pity.
Liar.
—No. I don't. Not pity. Something else...
What?
—I don't know
Pffft. You're a whiner. Worse, you're boring.

Back to Back They Faced Each Other

Honest Reader, your alarm sounds. You wake, naked. It's a new day. You pull off warm covers. You're exposed, cold. Your assumptions, beliefs, expectations, needs, responsibilities...awaken. They're with you—part of you—influencing, defining, inspiring. You dress yourself in your reality, wearing it, as it wears on you. Welcome to the day.

My alarm sounds. I wake, naked. It's a new day. Under the covers I'm face-to-face with deadly disease. I have cancer. I roll over, seeking shelter, and I find a cure—a cure that will sicken me, weaken me. A cure for cancer that may give me cancer, weaken my heart, ruin my kidneys. May. Might. They don't know. We. Don't. Know. My assumptions, beliefs, expectations, needs, responsibilities...awaken, confused. Yesterday they were different. Tomorrow? who knows. I have now—only now. I cloak myself in now. Welcome to the day.

THAT is my reality.

It's a cloak that gives no comfort.

I Need.

I need love. I need comfort. I need...affection. I don't need hope, answers, solutions. I need warmth, whispers, caresses.

"Please, please, please let me, let nme, get what I want"...crikey, you are Morrissey! —Fuck off.
Whinge, whine, sob. Stop. Now. You're oversharing. It's awkward and uncomfortable... —So?
So?
—So? Why should I care? I'm not writing this for you. It's for me. I need this. I need this told. I may look a fool, but I won't live with regret. Not anymore. Life...life's too short.
No one cares.
—Look, do us both a favor, and don't read it if you don't want to. It's my blog, my choice, and my price...not yours.
You're weak.
—My point, exactly.

I'm Not OK

How do you face fear, and death, and do it alone?

How do you not do it alone?

We're born alone. We die alone. And in between, are we ever not alone?

Do we ever know anyone—even ourselves?

I don't know. I thought I did, but my assumptions, beliefs, expectations, needs, responsibilities...have been shattered.

Marriage asked me those questions, time and again. My divorce shouted them at me.

Now, cancer opposes me, toe-to-toe, screaming in my face, spraying spit, demanding I answer: are we ever not alone?

I don't know. I just don't know.

So much change; so little time. The gyre widened, foundation crumbled, center failed to hold. Truths become false. Things. Fell. Apart.

And inside, a disease grew. A cancer formed.

And I am alone.

Was it ever thus?

I know so little. Yet, I do know this: I'm lonely, and I need love; I'm frightened, and I need comfort; I'm vulnerable, and I'm scared, and I need safety.

But I'm Conflicted

I'm Divorced.
I'm lonely.
That's fixable.

I Have Cancer.
I'm lonely.
Ohhh...

Cancer's a harsh, jealous mistress. She demands sacrifice. She makes you selfish. To survive, you must nurture you. There's not a lot left for anyone else.

I'm Dad. My Little Angels need me, and I need them. So they get a part of me.

After cancer, after fatherhood, what's left?

I need a someone in the worst possible way; I'm vulnerable in the worst possible way; and I have so very little to give. How do you bring someone into this? How is it not...desperate? How do you embrace love?

A relationship is give and take. Cancer forces you to take...and take more.

And that's not fair.

I want to give. I want to love... But I'm held back.

Something stronger than my need stops me.

Is it fear? Is it guilt?

Yes. And yes.

I fear rejection. I fear the guilt that comes from dependence. I fear the guilt of not being strong—of not "handling it."

Precious vulnerability, naked heart—that's what stops me.

Everything is new, it's all too much...I cry, like a baby.

That's not bad.
—Fuck off.

I believe in me. I have faith—except when I don't.

I can handle this.

But it's not OK.

I'm not OK.

I'm alone.

You're still a tosser.
—Guilty. But that's a conversation for another day...

Empty

Empty Two words, so innocuous...

Two words, so explosive...

"Bowel Preparation"

Three pages of instructions.

Three. Pages.

Items to purchase:

• Miralax in large bottle (8.3 ounces or 238 grams)
• 4 Ducolax or bisacodyl tablets (5 milligram tablets)
• Large, 64-ounce bottle of sports drink, such as Gatorade (Are there small, 64-ounce bottles?)

A small list. But they forgot the most important thing you need. Think about it...

One week before your test (Oops, might should have read this earlier.):

• Do not take aspirin products or iron tablets (check)
• Do not take fiber supplements like Metamucil, Circel, or Fiberall (I'm regular as clockwork, thanks for asking, so no need for such shenanigans!)
• Do not eat popcorn or any corn (Dodged a bullet there, my annual piece of corn on the cob was in July. Seriously. Once a year—it's about all I can stand. Now, there's nothing here about corn chips, thank the gods. Me likey me some corn chippies...)

So, don't do anything that makes you bleed, poop, or poop small, yellow bits that remind you that you didn't chew really, really well.

On the Day Before Your Test

Drink only clear liquids. Avoid all red or purple colored liquids. Do not eat any solid food or milk products until your test is done.

This is no big deal. The list of options is straightforward. The only problem is the whole red/purple thing. Gatorade and likesuch products are icky. The only flavor I like is grape. Grape is purple. Fek.

Clear liquids:

• Water
• Strained fruit juices (no pulp)
• Popsicles
• Ice
• Soft drinks
• Gatorade
• Clear broth or bouillon
• Jello
• Kool Aid (oh yeahhhh)
• Coffee or tea (no milk or cream)

It's a manageable list. I was glad to see that "ice" is on the same list as "water" and "popsicles". (Am I being too snarky?) The one surprise is coffee. So, red or purple is out, brown is in. And it's a poop-stimulant, too! So, if I start the day with a nice, big cuppa...

My Day

I had a bunch of things to do the morning of my preparation. A lot of paperwork, phone calls, work work, stuff.

I savored a large Dunkin' Donuts half-caf, half-decaf black. I drank white grape juice. I consumed water. I was hydrated. I peed lots.

And I had sympathetic poops, or nervous poops, or preparatory poops, or whatever-it-is-you-call-the-poops-that-poop-when-you're-nervous-and-about-to-perform-on-stage-or-in-competition-poops-that-don't-really-satisfy-but-empty-you-enough-to-do-that-voodoo-that-you-are-preparing-to-do.

And it was OK.

But I don't live in a vacuum, lonely though I am. 

There was a problem with the littlest angel. In short, she banged her tailbone on Sunday, and she was in a lot of discomfort. She had had a great Sunday night's sleep, but she was stiff in the morning, and she was having some trouble sitting.

I had given her ibuprofen and something soft to sit upon, but (and you parents out there already know where this is going...) after stopping by the school to give her more medicine, I saw the dark circles under her eyes, heard the voice, and decided she was coming home with me.

Thus, I was doing daddy duty at the start of doing doody duty.

Sigh...

Before tucking the angel in for a nap, I swallowed the "4 Ducolax or bisacodyl tablets (5 milligram tablets)". Just prior to doing so, I read the box (I know, crazy...). "Adults take one to three tablets as needed for relief of constipation." One to three. I just took four. This oughta be interesting...

Angel tucked, I waited an hour, listening in on meetings (I love it when they don't know I'm there!) and began step two:

Mix the Miralax in a 64-ounce bottle of Gatorade or other clear liquid of choice. Cap the bottle and shake the bottle to dissolve the powder. Most people prefer to drink the liquid chilled so you may want to place it in the refrigerator.

I'm glad that it told me to cap the bottle...

Oh, hey now, what's...oh, boy, here we go...

It seems that shaking bottles is, er, stimulating...

I spoke with the littlest angel's mother, and we worked out a plan for taking the sweetie to the doctor. She was resting well, but we knew from experience that tailbones are notorious for pain and discomfort. We knew she wouldn't want to do any physical education at school, but we needed a doctor's note to support that. So, somehow, some way, I needed to try to control myself just enough to drive her to the doctor.

But I could not stop the process...on to step three:

Start to drink the Miralax. Drink one glass every 10 to 15 minutes. Drink it quickly rather than sipping small amounts because it does not taste that good. Finish drinking the liquid in 2 hours. Be sure to drink all of the liquid.

The author of the instructions really does not like commas...

Because you asked, Orange was the flavor I chose. (Actually it had some stupid marketing name like "Citrus Blast", but it was orange colored and tasted vaguely like oranges. And who gets paid to come up with those asinine names? I'm just happy we have moved beyond "extreme" everything. I'm not sure my bowels could have handled an "Extreme Citrus Blast".)

I drank. I drank some more. I clickityclacked. I drank some more.

Time passed. My alarm rang. Time to take her to the doctor. I stood. My stomach lurched. Actually, it "gglurched", which is an odd mashup of "gurgle" and "lurch", and then it settled. Sort of. I had the very real sensation that I had a ticking time bomb in my stomach.

We loaded up into the car and headed to the doctor. Gglurch.

We got to the doctor and checked in. Gglurch. Gglurch.

I spied the bathroom. But it was all in my stomach. It didn't feel like it had moved down yet, so I was hopeful. Gglurch.

Smiles, kisses with eldest little angel. Talk with their mother. Hug the LAs. Gglurch.

Goodnights. Gglurch. Gglurch.

Drive home. Gglurch. Gglurch. Gglurch.

Walk in. No gglurch.

Huh?

I drank the remaining mix. I cleaned up the house. I was heading up the stairs...

Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. RRRRUUUUUSSSShhhhhhhhh.

It left my stomach. Flush. Flush.

Window open? check


Big-ass fan on? check

Toilet paper? Erp?

Toilet paper? Fek.  

A small list. But they forgot the most important thing you need. Think about it...

It seems that I finished the roll during my nervous-poop, and I was so brain-dead that I failed to replace it.

So, here I was, mudflow man, lacking the SINGLE MOST IMPORTANT THING I NEEDED!

The wave passed. Actually, several waves passed of varying duration and intensity.

I engaged in "creative problem solving".

Dressed, I got my keys and wallet, puckered my pooper, and drove to the store.

Have you ever noticed That Guy walking through the store who looks...uncomfortable? He might be a little bent or shuffling. Maybe he sweat-glistens, a grimace on his face. If you listen, you might hear some grunt, or hum, or some other prehistoric sound—something that long pre-dates language, primal.

That guy was me.

I don't actually remember much. All higher functions were suppressed to serve my intense, waterproof focus.

I shopped. I paid. I drove. I got home.

Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. RRRRUUUUUSSSShhhhhhhhh.

Flush. Flush.

Jeeezus, I think my soul just passed through me...

And so it continued.

I got cold. Really cold. T-shirt, sweatshirt, fleece vest, fleece jacket cold.

I got hungry...strangely. I poured a container of chicken stock into a pot and heated it, while I packed for the journey north. I drank the hot stock. It tasted marvelous. I felt it flow down my throat, warming me. I felt it in my stomach, warm, comforting. I was happy. I felt it move...south. Warm, but a little alarming. And it moved down and over and up and over and down and over and... RRRRUUUUUSSSShhhhhhhhh.

Made it. And I had plenty of toilet paper.


It's alarming, knowing you're pooping but hearing sounds like you're peeing.

I was peeing out my arse.

Lovely.

In-between sessions, I drank grape juice or water. At some point I sensed a rhythm, a correlation... Every time I drank, I pooped. It was like drinking beer. When you "rent" beer, you know you will pee—it is what it is. When you drink water, you don't expect to pee from your arse. And that's what bowel prep does: it makes you pee out your arse.

I finished packing and got into bed, clothes on. I was still cold to the core, and I didn't trust myself to not crap myself.

My instructions told me to not drink anything after midnight, so I wanted to make sure I was sufficiently hydrated after my hours-long purge. I continued to drink water, but it sent me to the throne every time.

I slept. I woke with a start, rushing to the throne room. Is this the way it was going to go all night?

Yes.

I slept. I rushed.

I slept. I rushed.

I slept. And the alarm blared all-too soon. 0400. Time to... RRRRUUUUUSSSShhhhhhhhh.

Made it.

And I still had plenty of toilet paper.

And it was done. I showered, dressed, and headed for the train.

And that, Honest Reader, is where I am now, clickityclacking away.

On my way for another biopsy. Hopeful. Nervous. Empty.  

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

Bezoars, Complexity, Secrets, and Needles

Constant Reader, within you may join me on a journey of discovery, as I learn a little more about complexity, and discover things that I did not know (because no one told me)...


For the first time since I-don't-know-when, I did not need to wait for my appointment. Less than three minutes after checking in, I was whisked off to an examination room.

Dr. Erinjeri walked in. I did a double-take as I processed this sharply-suited young man. The last time I saw him he was wearing scrubs and a hair net. Yes, he is the doctor who performed my first biopsy.

"Your hair looks longer than I remember it," he said.

"That's because I water it every day."

And we were off...

He pulled up my CT scan onto the monitor and scrolled through it, narrating along the way.

Looking at the images, he pointed out the tumor, the bowels, and the common iliac artery. I had seen the images before, but I did not have the benefit of a clear explanation of features and positions. My previous interpretation was mostly educated guesswork. This was the real deal.

This is a slice of my CT scan (with oral and IV contrast) from August 26. The view is from the bottom, looking up. Imagine I am on my back, and you are naughty and decide to look up my skirt. The tumor is center-right in the image (corresponding to the the left side of my pelvis).

Intestines are directly above and around the tumor. The darker grey is my small intestine. The whitish grey is part of my large intestine.

The tumor is the circle in the center-right. The dark portion in the center is necrotic tissue. The lighter color surrounding it is malignant tissue. It is now roughly the size of a medium egg.

The common iliac artery is immediately adjacent to the tumor. Viewing this image it is easy to understand why the surgical margins are so poor.

I have no idea what the dark spot is. It looks like poop, don't it? OK, I'm lying. They are veins. The one I labeled "Poop" is the vein through which they took my first biopsy.

We looked at the image, scrolling up and down my virtual pelvis. In homage to black-and-white film noir, my hands sweated as I learned more—to the point where I smeared the ink in my notebook. It was that intense for me as we spoke in detail about my first biopsy.

Dr. Erinjeri performed my initial biopsy with a very fine needle, piercing the vein (labeled "Poop") to access the tumor. As previously noted, this was a marginally successful procedure. It was successful in that it captured sample tissues. It was a failure in that the samples were inadequate to our needs.

Secret #1

Over the course of the conversation, I learned that it very nearly was a complete failure. I was sedated throughout the procedure. I remember the nurse pushing the plunger to sedate me, and I remember being wheeled out of the room. I remember nothing in-between.

Apparently, however, I was talking to the team throughout the experience. I can be loquacious, It seems that I was on-form.

Non-stop chatter, or so he tells me. Unfortunately, I don't remember any of it, I certainly do not remember that there were three attempts at the biopsy—each with increasing levels of risk. It was on the third—and final—attempt that they were able to get anything from the tumor.

This explains the discomfort I experienced afterward (and now, as I write this, two weeks later). There was far more manipulation of my tissues than I knew previously.

Here's a closer look at the tumor and the artery. I cropped and enhanced the image with a histogram equalize filter, to give it more contrast. Note that the tumor (center of image) is approximately 4.5 centimeters in diameter. It is approximately five times the diameter of the artery. To my imagination, it looks like Harry Potter's bezoar. Alternatively, think "hard boiled egg".

Our conversation turned to my next biopsy, for which the only recommended procedure is hydrodissection. It is a rarely-performed procedure. Of the 3,000+ needle biopsies performed at MSK each year, maybe five are hydrodissections. However, of those five or so, Dr. Erinjeri does four.

Hydrodissection

In this procedure, two needles are used, one is inserted between folds in my bowels (maintaining the integrity of my intestines). This needle is used to "inflate" the area with contrast saline liquid or a gas (carbon dioxide or nitrogen). The idea is to use hydraulic or gas pressure to push the bowels apart, enabling the second needle to have a straight, clean path to the tumor (see annotated image). Basically, it's fracking my bowels (as opposed to frikking my balls, which is a cheap joke used to provide a moment of levity).

The blue line represents Needle 1, which will be inserted into the belly. It will then be used to pump fluid or gas into the area to separate the tissue masses. The red dashed line represents Needle 2, which is the needle used to sample the tumor. The position in this image is approximate. The intention is for the hydraulic pressure to push the masses apart, enabling straight-line access to the tumor.

If the "inflation" technique works, he will take a 2+ centimeter core sample of the tumor. This sample would include material from the tumor's dead center, the malignancy, and surrounding healthy tissue. Doing so gives the analysts a complete perspective on the tumor, allowing for definitive testing to be performed on the tissues.

And that's what we want.

However, as I mentioned in a previous post, it may not work. Lacking a virgin bowel (I feel dirty writing that...) it is possible that adhesions have formed from my previous surgery. If this is the case, then the "inflation" will not work. Adhesions are not bad—they are merely scarring from previous surgeries—unless you are trying to balloon my bowels.

This procedure is done on an outpatient basis. This means two very big things:

1. I will know—as they wheel me out of the ER—if it worked.
2. I can get back to the business of life the following day.

Secret #2

At this point that I learned another untold secret.

I asked if Hydrodissection would be an inpatient or outpatient procedure, fully expecting that it would be an inpatient procedure. My reasoning was that the last biopsy had kept me in the hospital for two days.

So, I was dumbfounded when he replied, "Outpatient."

I asked him how that was possible, considering my previous hospital stay. He looked at me in that curious, tilt-headed way a scientist looks at an unwanted specimen. Then, a moment of recognition, and he told me something that almost knocked me out of my chair.

"I remember now...they kept you in because they thought you might have had something different, and they wanted you here in case they needed to start you on immediate chemotherapy."

(gulp)

I elected not to pursue that conversation. My brain was getting full. It was another reminder that I was being well-managed by my medical team.

Confidence

"I'm very confident that this will work. Now, I'm a confident guy, but I don't see anything in the scans that indicates that this wouldn't work for you. Of course, we won't know until we try."

You see, my interventional oncologist is known as "the crazy-biopsy guy." (Honest Reader, please note the use and position of the hyphen.) He's the guy who does the tricky, difficult, or complex procedures. He as a healthy ego, and (yes) he is a little crazy. He's also terrifyingly young, energetic, and sharp. And ladies, he's unmarried...jump that train!

But I digress..

He's a creative a problem-solver. To that end, he referenced Neils Bohr's famous quote:

We are all agreed that your theory is crazy. The question which divides us is whether it is crazy enough to have a chance of being correct. My own feeling is that it is not crazy enough.

Hydrodissection is crazy. Is it crazy enough?

So, What If It Doesn't Work?

There is one more option.

As a last resort, I would get to play the role of "guinea pig" in the ongoing farce that has become my life.

It's inelegant. One might say it is brute force...

The "crazy enough" solution? Drill through the hip.

Dr. Erinjeri: "It's never been done, but we have high confidence that it would work, and we've been waiting for the right situation to come along for us to do it."

Frightened and flattered, I listened.

"We already routinely go through the flesh of the hip to drill the hip bone to take bone marrow samples. We've been doing this for years. And we already use needles to biopsy the muscle inside the hip. This would be connecting the two. We would drill the hip and then insert the needle through the tubule we put in the bone. It doesn't effect the integrity of the hip at all. it's just a matter of doing it."

And listening, nodding, grokking, I realized that it is just crazy enough to work.

As I continue to become a smaller slice of pie, it seems more and more likely that this will happen—it's gotta, right?¹ This is crazy!

But we will not cross that bridge until we absolutely must.

Next Steps

Monday, September 23 will become moanday. I will be on a liquid diet, and I will be cleansing my bowels. The purpose is to help shrink the area and prepare it for manipulation.

Tuesday, September 24 will be the day of my procedure. I do not know the time yet. As of now I plan to head up to New York frightfully early and return the same evening. It may be insane...we shall see.

And the following Tuesday, October 1, I return to New York to learn my fate.


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

---

¹For the record, we talked about other options. They do have a number of techniques that they are developing (using animals, not cadavers...yes, I asked), but that are not quite ready to be used on cancer patients. One involves micro cameras, using them in a way similar to a laparoscopic procedure. In this procedure they use what they see in the laparoscopic scope to guide them (as opposed to CT scans). As I understand it, this presents some challenges.